Autism Spectrum Disorders
Autism Spectrum Disorders A HANDBOOK FOR PARENTS AND PROFESSIONALS Volume 1: A–O Edited by
Brenda Smith Myles, Terri Cooper Swanson, Jeanne Holverstott, and Megan Moore Duncan
Library of Congress Cataloging-in-Publication Data Autism spectrum disorders : a handbook for parents and professionals / edited by Brenda Smith Myles, Terri Cooper Swanson, Jeanne Holverstott, and Megan Moore Duncan p. cm. Includes bibliographical references and index. ISBN-13: 978–0–313–33632–4 (set : alk. paper) ISBN-13: 978–0–313–34632–3 (v. 1 : alk. paper) ISBN-13: 978–0–313–34634–7 (v. 2 : alk. paper) 1. Autism in children—Handbooks, manuals, etc. [DNLM: 1. Autistic Disorder—Handbooks. 2. Child Development Disorders, Pervasive—Handbooks. WM 34 A939 2007] I. Myles, Brenda Smith. II. Swanson, Terri Cooper. III. Holverstott, Jeanne. IV. Duncan, Megan Moore. RJ506.A9A92377 2007 618.920 85882—dc22 2007030685 British Library Cataloguing in Publication Data is available. Copyright Ó 2007 by Brenda Smith Myles, Terri Cooper Swanson, Jeanne Holverstott, and Megan Moore Duncan All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 2007030685 ISBN-13: 978–0–313–33632–4 (set) 978–0–313–34632–3 (vol. 1) 978–0–313–34634–7 (vol. 2) First published in 2007 Praeger Publishers, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.praeger.com Printed in the United States of America
The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48–1984). 10 9
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Contents
List of Entries
vii
Guide to Related Topics
xv
The Handbook
1
Appendix A: Newsletters
425
Appendix B: Journals
429
Appendix C: Organizations
437
Appendix D: Personal Perspectives
451
Index
471
About the Editors, Advisory Board, and Contributors
503
List of Entries
Absurdities Accommodation Activities of Daily Living Adaptive Behavior Adolescent/Adult Sensory Profile Adolescent and Adult Psychoeducational Profile Adult Supports Advocate Age Appropriate Ages and Stages Questionnaires: Social/Emotional Allergy Alternative Assessment American Sign Language (ASL) Americans with Disabilities Act (ADA) Amino Acids Amygdala Analysis of Behavioral Function Analysis of Sensory Behavior Inventory– Revised Edition Anecdotal Report Angelman Syndrome Animal Assisted Therapy/Assistance Dog Placements for Children with Autism Annual Goal Antecedent Antecedent-Behavior-Consequence (ABC) Analysis Antianxiety Medications Antibiotics Antidepressant Medications Antipsychotic Medications Anxiety Disorders Applied Behavior Analysis (ABA) Apraxia Art Therapy Asperger, Hans
Asperger’s Disorder Asperger Syndrome Diagnostic Scale (ASDS) Asperger Syndrome Screening Questionnaire (ASSQ) Assessment Assessment of Basic Language and Learning Skills (ABLLS) Assistive Technology Assistive Technology Device Assistive Technology Service Association Method Attention Deficit Hyperactivity Disorders (ADHD) Attribution Atypical Behavior Audiologist Auditory Integration Training Augmentative and Alternative Communication Autism Behavior Checklist (ABC) Autism Diagnostic Interview–Revised (ADI-R) Autism Diagnostic Observation Schedule (ADOS) Autism Screening Instrument for Educational Planning–Second Edition Autistic Disorder
Baseline Behavior Behavioral Assessment of the Dysexecutive Syndrome (BADS) Behavioral Objective Behavioral Rehearsal Behavior Analyst Certification Board (BACB) Behavior Assessment Scale for Children (BASC)
LIST OF ENTRIES Behavior Health Rehabilitation Services (BHRS) Behavior Intervention Plan Behaviorism Behavior Modification Behavior Principles Bettelheim, Bruno Bias Biofeedback Bleular, Eugen Board Certified Associate Behavior Analyst (BCABA) Board Certified Behavior Analyst (BCBA) Bolles Sensory Integration Bowel Problems Brushing Bullying Career Planning Cartooning Casein-free Catatonia CAT Scan Central Auditory Processing Disorder (CAPD) Central Coherence Chaining Checklist for Autism in Toddlers (CHAT) Checklist for Occupational Therapy Chelation Child Behavior Checklist for Ages 11=2 to 5 Childhood Asperger Syndrome Test (CAST) Childhood Autism Rating Scale (CARS) Childhood Disintegrative Disorder Children’s Attributional Style Questionnaire (CASQ) Children’s Category Test (CCT) Children’s Depression Inventory (CDI) Chronological Age Circle of Friends Classroom Reading Inventory Clinical Assessment (Educational) Clinical Assessment (Medical) Clinical Evaluation of Language Fundamentals–Preschool Clinical Opinion Clinical Practice Guidelines Clinical Significance Clinical Social Worker Clinical Trial Clostridium tetani Cognitive Behavior Modification
viii
Cognitive Learning Strategies Cognitive Processes Collaborative Team Communication and Symbolic Behavior Scales (CSBS) Communication and Symbolic Behavior Scales Developmental Profiles (CSBS DP) Communication Board Co-morbid/Co-occurring Comprehensive Assessment of Spoken Language Comprehensive Autism Program Planning System (CAPS) Concrete Language Concurrent Validity Confidentiality Consent Consequence Constipation Contingency Contingency Contracting Control Group/Control Condition Correctional Facility Criterion-Referenced Assessment Curriculum Curriculum-Based Assessment Daily Living Skills Dance Therapy Das-Naglieri Cognitive Assessment System (CAS) Data Deep Pressure Proprioception Touch Technique Desensitization Detoxification Developmental Age Developmental Delay Developmental Disorder Developmental Individual-Difference Relation-Based Intervention (DIR) Developmentally Appropriate Practice Developmental Milestones Developmental Play Assessment Instrument (DPA) Developmental Quotient Developmental Surveillance Developmental Therapy Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revised (DSM-IV-TR) Diet Diet Therapy Differential Ability Scales
LIST OF ENTRIES Differential Diagnosis Differential Reinforcement Dimethylglycine (DMG) Direct Instruction Direct Observation Disability Discrete Trial Training (Brief Definition) Discrete Trial Training (Extended Definition) Discrimination Discriminative Stimulus Distributed Practice Dopamine Double Blind Double Interview Due Process Durrell Analysis of Reading Difficulty (DARD) Dysbiosis Dysphasia Early Coping Inventory Early Intervention Echoic/Verbal Behavior Echolalia: Immediate, Delayed, Mitigated Ecological Inventory Educational Placement Eisenberg, Leon Electroencephalogram Eligibility Elimination Diet and Food Sensitivities Embedded Figures Test (EFT) Embedded Skills Emotional Support Empiricism Encopresis Engagement Enuresis Environment Environmental Stressors Epidemiology Error Correction Escape Training Establishing Operation Evaluating Acquired Skills in Communication–Revised (EASIC-R) Evaluation Report Evidence Based Executive Functions Experimental Design Expressive Language Extended School Year (ESY) Extinction Eye Gaze
Face Recognition Facilitated Communication (FC) Facility-Based Employment Fading False-Belief Paradigm Family Assessment Interview Family Educational Rights and Privacy Act (FERPA) Fast ForWord Feingold Diet Figurative Language Fine Motor Skills Fluency Four Steps of Communication Four Steps of Perspective Taking Fragile X Syndrome Free and Appropriate Public Education (FAPE) Functional Analysis Screening Tool (FAST) Functional Behavior Analysis Functional Behavior Assessment (FBA) Functional Goals Functional Limitations Functionally Equivalent Alternative Behavior Functional Magnetic Resonance Imaging (fMRI) Functional Outcomes Functional Protest Training Functional Skills Functions of Behavior Functions of Communication Fusiform Gyrus General Case Programming Generalization Genetic Factors/Heredity Genotype Gentle Teaching (GT) Giftedness Gilliam Asperger Disorder Scale (GADS) Gilliam Autism Rating Scale (GARS) Gluten-free Good Grief! Graduated Guidance Graphic Organizer Gravitational Insecurity Gross Motor Developmental Quotient Gross Motor Skills Guided Compliance Habit Rehearsal Hair Analysis Halstead-Reitan Neuropsychological Test Battery (HRPTB)
ix
LIST OF ENTRIES Hand-over-Hand Assistance (HOH) Hand Regard Head Circumference Heavy Metals Hidden Curriculum High-Functioning Autism Hippocampus Hippotherapy Homebound/Hospital Bound Program Hormone Replacement Hug Machine Hyperlexia Hyperresponsiveness Hyporesponsiveness Idiosyncratic Language I LAUGH Model of Social Cognition Imagination Imitation/Modeling Immunoglobulin Immunological Tests Immunotherapy Impairment Incidence Incidental Teaching Incident Report Inclusion Independent Employment Indicators of Sensory Processing Disorder Individualized Education Program (IEP) Individualized Family Service Plan (IFSP) Individualized Health Care Plan (IHCP) Individualized Transition Plan Individual Plan for Employment (IPE) Individuals with Disabilities Education Act (IDEA) Infant/Toddler Sensory Profile Informal Assessment Integrated Employment Integrated Play Group Model (IPG) Intelligence Tests Internal Review Board (IRB) International Statistical Classification of Diseases and Related Health Problems (ICD) Interobserver Agreement/Reliability Intraverbal Irlen Lenses Joint Action Routines Joint Attention Journal
x
Kanner, Leo Krug’s Asperger’s Disorder Index Lactose Intolerance Landau-Kleffner Syndrome Leaky Gut Syndrome Learned Helplessness Learning Disorder Learning Styles Least Restrictive Environment (LRE) Leiter International Performance Scale Life Skills and Education for Students with Autism and Other Pervasive Behavioral Challenges (LEAP) Life Skills Support Limbic System Lindamood-Bell Local Education Agency Locomotion Low/Poor Registration Magnetic Resonance Imaging (MRI) Mainstreaming Maintenance Maladaptive Behavior Mand Massed Practice Masturbation Mean Length of Utterance Mediation Mental Age Mental Health Counselor Mental Retardation Mercury Metallothionein Milieu Teaching Mindblindness Modified Checklist for Autism in Toddlers (M-CHAT) Mood Disorders Mood Stabilizing Medications Motivation Assessment Scale Motor Imitation Multidimensional Anxiety Scale for Children (MASC) Multidisciplinary Evaluation (MDE) Multidisciplinary Team Music Therapy Mutually Acceptable Written Agreement Natural Language Paradigm Neurofeedback
LIST OF ENTRIES Neuroimaging Neurologist Neurology Neuromotor Neuropsychology Neurotoxic Neurotransmitter Newsletter No Child Left Behind Act 2001 (PL 107-110) No-No Prompt Procedures Nonverbal Learning Disability Normalization Norm-Referenced Assessment Notice of Recommended Educational Placement (NOREP) Nutritional Supplements Object Integration Test Objective Object Sorting Test Occupational Therapist Occupational Therapy Operant Conditioning Options (Son-Rise Program) Oral-Motor Skills Oral Sensitivity Overcorrection Overselectivity/Overfocused Attention Patterning (Doman-Delacato Treatment) Pedantic Speech Peer Reviewed Peptide Percentile Perseveration Perseverative Scripting Personal Perspectives Person First Language Pervasive Developmental Disorder–Not Otherwise Specified Pervasive Developmental Disorder–Not Otherwise Specified Diagnostic Criteria (Diagnostic Criteria for 299.80, Including Atypical Autism) Pervasive Developmental Disorders (PDD) Pervasive Developmental Disorder Screening Test-II (PDDST-II) Pesticides Pharmacology Phenotype Physical Therapist Physical Therapy Pica
Picture Exchange Communication System (PECS) Pivotal Response Training Placebo Play-Oriented Therapies Positive Behavior Support (PBS) Positron Emission Tomography (PET) Postsecondary Education Posttraumatic Stress Disorder (PTSD) Power Card Strategy Pragmatics Praxis Precision Teaching Present Level of Educational Performance (PLEP) Presymbolic Thought Prevalence Priming Probe Procedural Safeguards Prompt Dependence Prompt Hierarchy Prompting Pronoun Errors Proprioception Prosody Proto-declarative Proto-imperative Prototype Formation Psychiatrist Psychobiology Psychoeducational Profile–Third Edition (PEP-3) Psychologist Psychometrics Psychopharmacology Psychosocial Punishment RDI Program Reactive Attachment Disorder of Infancy or Early Childhood Receptive Language Reciprocal Communication/Interaction Red Flags Rehabilitation Act of 1973 Reinforcer Residential Facility Residential Supports Resource Room Respite Care Respondent Conditioning Response Cost Response Latency
xi
LIST OF ENTRIES Restricted Interest Retrospective Video Analysis (RVA) Rett’s Disorder Rett’s Disorder–Diagnostic Criteria for 299.80 Rett’s Disorder Rimland, Bernard Rumination Syndrome Scales of Independent Behavior–Revised (SIB-R) SCERTS Model Schedule of Reinforcement Schizophrenia School Function Assessment Schopler, Eric Screening Screening Tool for Autism in Two-Year-Olds (STAT) Secretin Section 504 of the Rehabilitation Act of 1973 Seizure Disorder Selective Mutism Self-Advocacy Self-Contained Classroom Self-Determination Self-Help Skills Self-Injurious Behavior Self-Regulation Sensation Avoiding Sensation Seeking Sensorimotor Sensorimotor Early Childhood Activities Sensory History Sensory Integration Sensory Integration and Praxis Test (SIPT) Sensory Integration Dysfunction Sensory Integration Inventory–Revised (SII-R) Sensory Processing Sensory Processing Dysfunction Sensory Profile Sensory Sensitivity Sensory Stimuli Sensory Threshold Serotonin Setting Events Shaping Short Sensory Profile Sibling Support Project Sibshops Single-Subject Design Situation-Options-Consequences-ChoicesStrategies-Simulation (SOCCSS) Social Autopsies
xii
Social Behavior Mapping Social Communication Social Communication Questionnaire (SCQ) Social Competence Social Faux Pas Social Gaze Social Play Social Scripts Social Skills Defined as Sharing Space Effectively with Others Social Skills Training Social Stories Social Thinking Social Validity Somatosensory Special Day School or Alternative School Speech Delay Speech Language Pathologist Speech Therapy Splinter Skills Spontaneous Play Standard Deviation Standardization Standardization Sample Standardized Tests Standard Score Stanford-Binet Intelligence Scales–Fifth Edition Stereotypic Behavior Stimulant Medications Stimulus Stimulus Control Stimulus Overselectivity Storymovies Structured Teaching (TEACCH) Student Social Attribution Scale (SSAS) Supplemental Security Income (SSI) Supported Employment Surthrival Symbolic Play Symbolic Thought Symptom Syndrome Systematic Desensitization Tact Tactile Tactile Defensiveness Target Behavior Task Analysis Testimonial Test of Adolescent and Adult Language– Fourth Edition (TOAL4) Test of Language Competence (TLC)
LIST OF ENTRIES Test of Language Development–Intermediate, Third Edition (TOLD-I) Test of Language Development–Primary (TOLD-P) Test of Pragmatic Language (TOPL) Test of Problem Solving–Adolescent (TOPS-A) Test of Problem Solving–Elementary (TOPS-E) Theory of Mind Tic Disorders Time-out Toe Walking/Equinus Gate Token Economy Total Communication Touch Pressure Touch Therapy Tower of Hanoi (TOH) Toxicology Trail-Making Test Transition Planning Treatment Effectiveness Trial Tuberous Sclerosis Complex Twenty Questions Task Twin Studies
Verbal Behavior Vestibular Video Modeling Video Self-Modeling Vineland Adaptive Behavior Scales–Second Edition (VABS-II) Virtual Environment Viruses Visual-Motor Visual Strategies Vocational Rehabilitation Vocational Rehabilitation Programming Voting Wait Training Wechsler Individualized Achievement Test–Second Edition (WIAT-2) Wechsler Intelligence Scales for Children–Fourth Edition (WISC-IV) Welch Method Therapy Wilbarger Protocol Wisconsin Card Sorting Test (WCST) Woodcock-Johnson Psychoeducational Battery–Revised: Tests of Cognitive Ability Work Adjustment Period
Universal Nonverbal Intelligence Test (UNIT)
Yeast-free
Vaccinations (Thimerosal) Validity van Dijk Approach
Zero Reject Ziggurat Model Zone of Proximal Development (ZPD)
xiii
Guide to Related Topics
ASD AND ABA TERMINOLOGY ADVOCACY AND SELF-DISCLOSURE Advocate Discrimination Emotional Support Functional Skills Life Skills Support Person First Language Self-Advocacy Self-Determination
PROFESSIONALS Behavior Analyst Certification Board (BACB) Board Certified Associate Behavior Analyst (BCABA) Board Certified Behavior Analyst (BCBA) Certified Behavior Analyst
STRATEGIES Analysis of Behavioral Function Behavioral Rehearsal Behavior Modification Chaining Contingency Contingency Contracting Differential Reinforcement Discrete Trial Training (Brief Definition) Discrete Trial Training (Extended Definition) Error Correction Escape Training Extinction Fading Functional Protest Training Graduated Guidance Guided Compliance Habit Rehearsal Hand-over-Hand Assistance (HOH)
Massed Practice No-No Prompt Procedures Operant Conditioning Overcorrection Prompt Hierarchy Prompting Punishment Respondent Conditioning Response Cost Response Latency Shaping Task Analysis Time-out Token Economy Wait Training
TERMINOLOGY Antecedent Behavior Behavioral Objective Behavior Health Rehabilitation Services (BHR) Behaviorism Behavior Principles Consequence Contingency Desensitization Discriminative Stimulus Establishing Operation Functionally Equivalent Alternative Behavior Functions of Behavior Intraverbal Learned Helplessness Mand Prompt Dependence Reinforcer Schedule of Reinforcement Setting Events
GUIDE TO RELATED TOPICS Stimulus Stimulus Control Stimulus Overselectivity Systematic Desensitization Tact Target Behavior Trial
ASD AND EDUCATION ADULT ISSUES Adult Supports Career Planning Facility-Based Employment Independent Employment Integrated Employment Masturbation Postsecondary Education Residential Supports Supplemental Security Income (SSI) Supported Employment Vocational Rehabilitation Vocational Rehabilitation Programming Voting Work Adjustment Period
CONTINUUM
OF
SERVICES
Correctional Facility Homebound/Hospital Bound Program Residential Facility Resource Room Self-Contained Classroom Special Day School or Alternative School
DAILY LIVING Activities of Daily Living Daily Living Skills Environmental Stressors Functional Goals Functional Limitations Functional Outcomes Functional Skills Self-Help Skills
SCHOOL TERMINOLOGY Accommodation Adaptive Behavior Annual Goal Behavior Intervention Plan Bullying Cognitive Processes Collaborative Team Curriculum Due Process
xvi
Early Intervention Educational Placement Eligibility General Case Programming Generalization Impairment Inclusion Intelligence Tests Learning Styles Local Education Agency Maladaptive Behavior Multidisciplinary Team Notice of Recommended Educational Placement (NOREP) Transition Planning
SPECIAL EDUCATION LAW Americans with Disabilities Act (ADA) Due Process Extended School Year (ESY) Family Educational Rights and Privacy Act (FERPA) Free and Appropriate Public Education (FAPE) Individualized Education Program (IEP) Individualized Family Service Plan (IFSP) Individualized Health Care Plan (IHCP) Individualized Transition Plan Individual Plan for Employment (IPE) Individuals with Disabilities Education Act (IDEA) Least Restrictive Environment (LRE) Mainstreaming Mediation Mutually Acceptable Written Agreement No Child Left Behind Act 2001 (PL 107-110) Present Level of Educational Performance (PLEP) Rehabilitation Act of 1973 Section 504 of the Rehabilitation Act of 1973 Zero Reject
ASD AND MEDICINE STRATEGIES Antianxiety Medications Antidepressant Medications Antipsychotic Medications Casein-free Chelation Detoxification Elimination Diet and Food Sensitivities
GUIDE TO RELATED TOPICS Feingold Diet Gluten-free Hormone Replacement Mood Stabilizing Medications Nutritional Supplements Yeast-free
TERMINOLOGY Allergy Amino Acids Amygdala Antibiotics Bowel Problems CAT Scan Clinical Assessment (Educational) Clinical Assessment (Medical) Clinical Opinion Clinical Practice Guidelines Clinical Trial Clostridium tetani Co-morbid/Co-occurring Constipation Differential Diagnosis Dimethylglycine (DMG) Dopamine Dysbiosis Electroencephalogram Encopresis Enuresis Epidemiology Functional Magnetic Resonance Imaging (fMRI) Fusiform Gyrus Genotype Hair Analysis Head Circumference Heavy Metals Hippocampus Immunoglobulin Immunological Tests Immunotherapy Lactose Intolerance Leaky Gut Syndrome Limbic System Magnetic Resonance Imaging (MRI) Mercury Metallothionein Neuroimaging Neurology Neuromotor Neuropsychology Neurotoxic Neurotransmitter Peptide
Pharmacology Phenotype Placebo Positron Emission Tomography (PET) Prevalence Psychobiology Psychopharmacology Psychosocial Rumination Syndrome Secretin Serotonin Stimulant Medications Symptom Syndrome Toxicology Treatment Effectiveness Twin Studies
ASD AND RELATED DISORDERS Asperger’s Disorder Autistic Disorder Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revised (DSM-IV-TR) High-Functioning Autism International Statistical Classification of Diseases and Related Health Problems (ICD) Pervasive Developmental Disorder–Not Otherwise Specified Pervasive Developmental Disorder–Not Otherwise Specified Diagnostic Criteria (Diagnostic Criteria for 299.80, Including Atypical Autism) Pervasive Developmental Disorders (PDD)
BEHAVIOR Adaptive Behavior
ETIOLOGY Diet Environment Genetic Factors/Heredity Pesticides Vaccinations (Thimerosal) Viruses
RELATED DISORDERS Angelman Syndrome Anxiety Disorders Attention Deficit Hyperactivity Disorders (ADHD) Catatonia
xvii
GUIDE TO RELATED TOPICS Central Auditory Processing Disorder (CAPD) Childhood Disintegrative Disorder Developmental Disorder Fragile X Syndrome Giftedness Landau-Kleffner Syndrome Learning Disorder Mental Retardation Mood Disorders Nonverbal Learning Disability Pica Posttraumatic Stress Disorder (PTSD) Reactive Attachment Disorder of Infancy or Early Childhood Rett’s Disorder Schizophrenia Seizure Disorder Selective Mutism Sensory Integration Dysfunction Tic Disorders Tuberous Sclerosis Complex
ASD AND RESEARCH Baseline Bias Clinical Significance Concurrent Validity Confidentiality Consent Control Group/Control Condition Data Double Blind Empiricism Evidence Based Experimental Design Incidence Internal Review Board (IRB) Interobserver Agreement/Reliability Maintenance Normalization Prevalence Testimonial Validity
ASSESSMENTS AND ASD ACADEMIC ASSESSMENTS Classroom Reading Inventory Durrell Analysis of Reading Difficulty (DARD) Wechsler Individualized Achievement Test–Second Edition (WIAT-2)
xviii
Woodcock-Johnson Psychoeducational Battery–Revised: Tests of Cognitive Ability
ASSESSING CO-MORBID CONDITIONS Children’s Attributional Style Questionnaire (CASQ) Children’s Depression Inventory (CDI) Multidimensional Anxiety Scale for Children (MASC) Student Social Attribution Scale (SSAS)
BEHAVIORAL, SOCIAL, LANGUAGE, EMOTIONAL ASSESSMENTS
AND
Assessment of Basic Language and Learning Skills (ABLLS) Behavior Assessment Scale for Children (BASC) Child Behavior Checklist for Ages 11=2 to 5 Clinical Evaluation of Language Fundamentals–Preschool Communication and Symbolic Behavior Scales (CSBS) Communication and Symbolic Behavior Scales Developmental Profiles (CSBS DP) Comprehensive Assessment of Spoken Language Developmental Play Assessment Instrument (DPA) Early Coping Inventory Evaluating Acquired Skills in Communication–Revised (EASIC-R) Functional Analysis Screening Tool (FAST) Motivation Assessment Scale School Function Assessment Test of Adolescent and Adult Language– Fourth Edition (TOAL4) Test of Language Development–Intermediate, Third Edition (TOLD-I) Test of Language Development–Primary (TOLD-P) Test of Pragmatic Language (TOPL) Test of Problem Solving–Adolescent (TOPS-A) Test of Problem Solving–Elementary (TOPS-E) Vineland Adaptive Behavior Scales–Second Edition (VABS-II)
COGNITIVE ASSESSMENTS Absurdities Behavioral Assessment of the Dysexecutive Syndrome (BADS) Children’s Category Test (CCT)
GUIDE TO RELATED TOPICS Das-Naglieri Cognitive Assessment System (CAS) Differential Ability Scales Leiter International Performance Scale Object Sorting Test Social Faux Pas Stanford-Binet Intelligence Scales–Fifth Edition Test of Language Competence (TLC) Trail-Making Test Twenty Questions Task Universal Nonverbal Intelligence Test (UNIT) Wechsler Intelligence Scales for Children– Fourth Edition (WISC-IV)
DIAGNOSTIC INSTRUMENTS Asperger Syndrome Diagnostic Scale (ASDS) Autism Diagnostic Observation Schedule (ADOS) Childhood Autism Rating Scale (CARS) Gilliam Asperger Disorder Scale (GADS) Gilliam Autism Rating Scale (GARS) Krug’s Asperger’s Disorder Index
INTERVIEW INSTRUMENTS Autism Diagnostic Interview–Revised (ADI-R) Family Assessment Interview
PRE-ACADEMIC ASSESSMENTS
AND
VOCATIONAL
Adolescent and Adult Psychoeducational Profile Psychoeducational Profile–Third Edition (PEP-3)
SCREENING INSTRUMENTS Ages and Stages Questionnaires: Social/Emotional Asperger Syndrome Screening Questionnaire (ASSQ) Autism Behavior Checklist (ABC) Autism Screening Instrument for Educational Planning–Second Edition Checklist for Autism in Toddlers (CHAT) Childhood Asperger Syndrome Test (CAST) Modified Checklist for Autism in Toddlers (M-CHAT) Pervasive Developmental Disorder Screening Test-II (PDDST-II) Red Flags Screening Tool for Autism in Two-Year-Olds (STAT) Social Communication Questionnaire (SCQ)
SENSORY ASSESSMENTS Adolescent/Adult Sensory Profile Analysis of Sensory Behavior Inventory– Revised Edition Checklist for Occupational Therapy Indicators of Sensory Processing Disorder Infant/Toddler Sensory Profile Sensory Integration and Praxis Test (SIPT) Sensory Integration Inventory–Revised (SII-R) Sensory Profile Short Sensory Profile
SOCIAL COGNITION ASSESSMENTS Comprehensive Assessment of Spoken Language Test of Problem Solving–Adolescent (TOPS-A) Test of Problem Solving–Elementary (TOPS-E)
TESTS
IN
RESEARCH PARADIGMS
Embedded Figures Test (EFT) Object Integration Test Prototype Formation Tower of Hanoi (TOH) Wisconsin Card Sorting Test (WCST)
BIOGRAPHIES Asperger, Hans Bettelheim, Bruno Bleular, Eugen Eisenberg, Leon Kanner, Leo Rimland, Bernard Schopler, Eric
COMMUNICATION INTERVENTIONS Communication Board
PROFESSIONALS Audiologist Speech Language Pathologist
TERMINOLOGY Concrete Language Dysphasia Echoic/Verbal Behavior Echolalia: Immediate, Delayed, Mitigated Expressive Language Figurative Language
xix
GUIDE TO RELATED TOPICS Fluency Functions of Communication Joint Attention Mean Length of Utterance Pedantic Speech Pragmatics Pronoun Errors Prosody Proto-declarative Proto-Imperative Receptive Language Reciprocal Communication/ Interaction Social Communication Social Competence Social Gaze Speech Delay Symbolic Play
FUNCTIONAL BEHAVIOR ASSESSMENTS Antecedent-Behavior-Consequence (ABC) Analysis Functional Behavior Analysis Functional Behavior Assessment (FBA) Scales of Independent Behavior–Revised (SIB-R)
TERMINOLOGY Alternative Assessment Anecdotal Report Assessment Clinical Assessment (Educational) Clinical Assessment (Medical) Criterion-Referenced Assessment Curriculum-Based Assessment Direct Observation Ecological Inventory Evaluation Report Incident Report Informal Assessment Intelligence Tests Mental Age Multidisciplinary Evaluation (MDE) Norm-Referenced Assessment Objective Percentile Probe Procedural Safeguards Psychometrics Screening Single-Subject Design Social Validity
xx
Standard Deviation Standardization Standardization Sample Standardized Tests Standard Score
MISCELLANEOUS TERMINOLOGY Age Appropriate Association Method Attribution Chronological Age Developmental Age Developmental Delay Developmentally Appropriate Practice Developmental Milestones Developmental Quotient Developmental Surveillance Direct Instruction Disability Distributed Practice Engagement Four Steps of Perspective Taking Perseverative Scripting Respite Care Retrospective Video Analysis (RVA) Social Skills Defined as Sharing Space Effectively with Others Zone of Proximal Development (ZPD)
OCCUPATIONAL THERAPY AREAS OF IMPACT Atypical Behavior Central Coherence Executive Functions Eye Gaze Face Recognition False-Belief Paradigm Hand Regard Hyperlexia Idiosyncratic Language Imagination Imitation/Modeling Mindblindness Perseveration Presymbolic Thought Restricted Interest Self-Injurious Behavior Social Play Stereotypic Behavior Symbolic Thought Theory of Mind Toe Walking/Equinus Gate
GUIDE TO RELATED TOPICS
TERMINOLOGY Gross Motor Developmental Quotient Locomotion Motor Imitation Praxis
PROGRAMS American Sign Language (ASL) Applied Behavior Analysis (ABA) Assistive Technology Assistive Technology Device Assistive Technology Service Auditory Integration Training Augmentative and Alternative Communication Cartooning Circle of Friends Cognitive Behavior Modification Cognitive Learning Strategies Comprehensive Autism Program Planning System (CAPS) Developmental Individual-Difference Relation-Based Intervention (DIR) Developmental Therapy Discrete Trial Training (Brief Definition) Discrete Trial Training (Extended Definition) Facilitated Communication (FC) Fast ForWord Gentle Teaching (GT) Incidental Teaching Integrated Play Group Model (IPG) Life Skills and Education for Students with Autism and Other Pervasive Behavioral Challenges (LEAP) Milieu Teaching Natural Language Paradigm Options (Son-Rise Program) Picture Exchange Communication System (PECS) Pivotal Response Training Play-Oriented Therapies Positive Behavior Support (PBS) Precision Teaching SCERTS Model Sensory Integration Sibshops Social Skills Training Structured Teaching (TEACCH) Total Communication van Dijk Approach Verbal Behavior Ziggurat Model
SENSORY INTERVENTIONS Bolles Sensory Integration Hug Machine Sensorimotor Early Childhood Activities
PROFESSIONALS Occupational Therapist Physical Therapist
TERMINOLOGY Apraxia Brushing Deep Pressure Proprioception Touch Technique Fine Motor Skills Gravitational Insecurity Gross Motor Skills Hyperresponsiveness Hyporesponsiveness Low/Poor Registration Oral-Motor Skills Oral Sensitivity Overselectivity/Overfocused Attention Proprioception Self-Regulation Sensation Avoiding Sensation Seeking Sensorimotor Sensory History Sensory Processing Sensory Processing Dysfunction Sensory Sensitivity Sensory Stimuli Sensory Threshold Somatosensory Tactile Tactile Defensiveness Touch Pressure Touch Therapy Vestibular Visual-Motor Wilbarger Protocol
STRATEGIES Biofeedback Double Interview Embedded Skills Four Steps of Communication Good Grief! Graphic Organizer I LAUGH Model of Social Cognition
xxi
GUIDE TO RELATED TOPICS Irlen Lenses Joint Action Routines Lindamood-Bell Neurofeedback Patterning (Doman-Delacato Treatment) Power Card Strategy Priming Situation-Options-Consequences-ChoicesStrategies-Simulation (SOCCSS) Social Autopsies Social Behavior Mapping Social Scripts Social Stories Social Thinking Storymovies Surthrival Video Modeling
xxii
Video Self-Modeling Virtual Environment Visual Strategies
THERAPIES Animal Assisted Therapy/Assistance Dog Placements for Children with Autism Art Therapy Dance Therapy Diet Therapy Hippotherapy Music Therapy Occupational Therapy Physical Therapy Speech Therapy Touch Therapy
A ABSURDITIES Absurdities refer to the verbal and pictorial components of the Stanford-Binet Intelligence Scales designed to test nonverbal knowledge. JEANNE HOLVERSTOTT ACCOMMODATION Accommodations are changes made to the general education curriculum or instructional techniques that do not substantially change the requirements of the curriculum or standards, but assist the student in making adequate progress. The accommodations are determined by the Individualized Education Program (IEP) team and are documented on the IEP. Accommodations must be provided in all appropriate environments and subject areas. KATHERINE E. COOK ACTIVITIES OF DAILY LIVING Activities of daily living refer to the ongoing behaviors that occur on a daily basis. Such behaviors include eating, cooking, bathing, social interactions (such as leisure activities, attending school or work, or assisting with chores), and other activities that one might routinely expect an individual to perform or participate in. For many school-aged students, the skills to perform daily activities and develop independence for adult life may be included in the student’s Individualized Education Program (IEP) as goals and objectives. ANDREA M. BABKIE ADAPTIVE BEHAVIOR Adaptive behavior refers to the manner in which a person copes with the demands of the environment. It includes responses to biological demands (e.g., hunger), as well as social demands such as community expectations (e.g., following rules, personal responsibility), interpersonal requirements (e.g., communication, socialization), and practical challenges of daily living (e.g., using money, preparing meals, toileting; Nihira, Leland, & Lambert, 1992).
ADAPTIVE BEHAVIOR
A significant deficit in adaptive behavior is a key criterion in the diagnosis of mental retardation (APA, 2000). In adaptive behavior assessment, clinicians commonly use checklists and questionnaires that yield standardized scores comparing a person’s level of adaptive functioning with age-matched samples (see Vineland Adaptive Behavior Scales). These instruments are also used to determine the individual’s relative adaptive strengths and weaknesses, as well as to identify ‘‘next step’’ instructional goals. For example, if it is determined that a child is using a spoon at mealtime, consideration might be given to instruction in using a fork. Level of adaptive functioning is determined by both the repertoire of adaptive skills an individual possesses and his or her ability to use those skills at the appropriate times. For example, in order to keep their hands clean, individuals must be able to carry out the multistep skill of hand washing (e.g., turning on the faucet, applying soap, and so on), use that skill when necessary Requesting help is an important adaptive skill. (e.g., before lunch), and complete it appropriately (e.g., without taking ‘‘too much time’’ or requiring repeated prompting from others in a school or vocational setting). Independent of overall level of cognitive functioning, persons with autism display significant deficits in the ability to apply the skills that they possess in adaptive ways. For example, they may have relatively large vocabularies but use spoken language almost exclusively to make requests rather than to interact with peers. Similarly, they may demonstrate a relative strength in reading or arithmetic, but not use the skill to participate in classroom activities (Carter et al., 1998). Self-care skills, such as dressing and toileting, are often areas of relative strength; however, because of the complex social and practical requirements of these tasks, specialized instruction is often necessary in these areas as well (VanMeter, Fein, Morris, Waterhouse, & Allen, 1997). Due to this ‘‘scattered’’ profile, careful adaptive behavior assessment is necessary. Through systematic instruction, as well as specialized supports (e.g., picture-based prompts or directions), persons with autism may learn complex adaptive skills and eventually generalize those skills to relevant settings. For example, communication and social skills (e.g., problem solving, requesting help) may be taught through specialized curricula implemented with a combination of structured and incidental teaching (e.g., Frost & Bondy, 2002; McGinnis & Goldstein, 1997). Daily living skills, such as toileting and tooth brushing, may be taught using task analytic procedures that break activities down into small units of instruction (Baker & Brightman, 1997). Because the construct of adaptive behavior focuses upon participation in everyday activities, it is a key consideration in comprehensive curricula designed to promote independence and quality of life. 2
ADOLESCENT AND ADULT PSYCHOEDUCATIONAL PROFILE
REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Baker, B. L., & Brightman, A. J. (1997). Steps to independence: Teaching everyday skills to children with special needs. Baltimore: Brookes Publishing Co. Carter, A. S., Volkmar, F. R., Sparrow, S. S., Wang, J., Lord, C., Dawson, G., et al. (1998). The Vineland Adaptive Behavior Scales: Supplementary norms for individuals with autism. Journal of Autism and Developmental Disorders, 28, 287–302. Frost, L., & Bondy, A. (2002). The picture exchange communication system training manual (2nd ed.). Newark, DE: Pyramid Educational Products, Inc. McGinnis, E., & Goldstein, A. P. (1997). Skillstreaming the elementary school child (2nd ed.). Champaign, IL: Research Press. Nihira, K., Leland, H., & Lambert, N. (1992). AAMR Adaptive Behavior Scale-Residential and Community: Examiner’s manual. Austin, TX: Pro-Ed. VanMeter, L., Fein, D., Morris, R., Waterhouse, L., & Allen, D. (1997). Delay versus deviance in autistic social behavior. Journal of Autism and Developmental Disorders, 27, 557–569.
DANIEL W. MRUZEK
ADHD. See Attention Deficit Hyperactivity Disorders ADOLESCENT/ADULT SENSORY PROFILE The Adolescent/Adult Sensory Profile (Brown & Dunn, 2002) was designed to identify sensory processing patterns in individuals 11 years and older. An individual can self-evaluate by completing a Self-Questionnaire that addresses how an individual typically responds to various situations and experiences. It is used to identify patterns of sensory processing consistent with those described in Dunn’s Model of Sensory Processing. The items on the profile address the areas of taste/smell, visual, touch, movement, auditory, and activity level. REFERENCE Brown, C., & Dunn, W. (2002). Adolescent/Adult Sensory Profile manual. San Antonio, TX: Harcourt Assessment.
LISA ROBBINS
ADOLESCENT AND ADULT PSYCHOEDUCATIONAL PROFILE The Adolescent and Adult Psychoeducational Profile (AAPEP; Mesibov, Schopler, Schaffer, & Landrus, 1989) is an extension of the Psychoeducational Profile-Revised designed as an assessment instrument for the TEACCH program. The AAPEP is applicable to the needs and goals of adolescents and adults with autism spectrum disorder (ASD), and is used to provide an evaluation of current and potential skills that are necessary for successful, semi-independent functioning in the home and the community. It contains a Direct Observation Scale, a Home Scale, and a School/Work Scale, with each scale divided into six function areas: vocational skills, independent functioning, leisure skills, vocational behavior, functional communication, and interpersonal behavior. 3
ADULT SUPPORTS
REFERENCE Mesibov, G., Schopler, E., Schaffer, B., & Landrus, R. (1989). Adolescent and adult psychoeducational profile: Individualized assessment and treatment for autistic and developmentally disabled children. Austin, TX: Pro-Ed.
JEANNE HOLVERSTOTT ADULT SUPPORTS Individuals with autism transitioning into adulthood continue to require habilitation to prepare for community-based day and vocational programs and the possibility for competitive employment, with or without supports. Individuals must be provided the opportunity to attain independence through a variety of services to include all realms of daily living across all environmental settings. Services consist of supports ranging from counseling, extended care, employment, family, financial, and health. Counseling supports are provided through face-to-face, individual, group, or family therapy. Sessions are designed to promote problem-solving skills, to improve communication, and to address behavioral, emotional, and cognitive concerns. Crisis intervention is available in emergency situations when individuals experience specific and time-limited problems that threaten to disrupt their home, school, or community situations. Extended care supports include recreation, habilitative, and social components. Recreational supports offer leisure and social activities to promote interactions with members of the community as well as developing hobbies one can participate in independently at home or in the community. Day habilitation services provide a nonresidential setting, separate from the individual’s home residence. Transition and adaptation skills are addressed according to skill levels and interests and assist in improving skill acquisition, retention, self-help, socialization, and motor manipulation. Further development of social skills, communication, safety awareness, and daily living skills is essential to increasing independence. Social components are integrated throughout both recreation and day habilitation services. Employment supports include all aspects of transitioning into the workforce and continued vocational support. Individualized assistance includes vocational training, job coaching, travel training, technological aids, job placement, and employment maintenance. Services may include job training, on- or off-site, to enhance job duty performance, work behaviors, use of community resources, and transportation to and from the workplace. More information is available at the local vocational rehabilitation office. Family supports include licensed residential programs, support groups, in-home services, respite care, parent advocacy and training, and service coordination. Services begin with a referral to a service provider. The service provider will then go through an intake process to identify needs and link to services after establishing eligibility. Coordinators then use a person-centered process to develop, implement, and maintain an Individualized Family Service Plan and to determine the level of support the individual and/or family needs. Parent support and education is provided through parent advocacy and training. In the event an individual becomes unable to be cared for in the home, residential services may be sought, including supervised group living, semiindependent group living, and other residential options. 4
ALLERGY
Financial supports offer guidance and consultation about sources of funding, benefits, and entitlements. More information is available at the local Social Security Office. Depending upon the individual’s needs and insurance coverage, health care supports may consist of medical, dental, and other health-related services. More information can be obtained by contacting the individual insurance company. See also self-determination. STACEY L. BROOKENS ADVOCATE An advocate is an individual who speaks, writes, or acts on behalf of another, especially in a legal context. According to the Americans with Disabilities Act (ADA) of 1990 (PL 101-336), individuals with disabilities and their families may advocate for themselves or appoint another to do so. REFERENCE Americans with Disabilities Act, 42 U.S.C. §§ 12101-12213 (1990).
JEANNE HOLVERSTOTT
AGE APPROPRIATE Age appropriate refers to the principles used for students with disabilities when a decision is required for placement, setting, and environment. Based on chronological age, not mental age, children with disabilities should be served in the same setting and environment with their nondisabled peers of the same or similar age. KAI-CHIEN TIEN
AGES AND STAGES QUESTIONNAIRES: SOCIAL/EMOTIONAL Ages and Stages Questionnaires: Social/Emotional (ASQ: SE; Squires & Potter, 2004) is a screening system used to evaluate social-emotional development at various stages (6, 12, 18, 24, 30, 36, 48, and 60 months). Completed in approximately 15 minutes by parents or caregivers at the eight designated intervals, the ASQ: SE screens the following behavioral areas: self-regulation, compliance, communication, adaptive functioning, autonomy, affect, and interaction with people. REFERENCE Squires, J., & Potter, L. (2004). Ages and stages questionnaires. Baltimore: Brookes Publishing Co.
JEANNE HOLVERSTOTT
ALLERGY An allergy is an exaggerated reaction to a specific or multiple substances. This reaction is specific to the immune system. Symptoms to specific substances produce no ill effects or symptoms to the majority of individuals. Allergic reactions occur through exposure via the skin, respiratory system, or the stomach and intestinal system. KATHERINE E. COOK 5
ALTERNATIVE ASSESSMENT
ALTERNATIVE ASSESSMENT Alternative assessment measures are nontraditional approaches to obtaining information regarding a student’s strengths and needs. The information gained from these measures directly relates to current and future curricular content. Examples of alternative assessments include the portfolio assessment, performance-based assessment, authentic assessment, curriculum-based assessment, and criterion-referenced assessment. FURTHER INFORMATION Overton, T. (2003). Assessing learners with special needs: An applied approach. Upper Saddle River, NJ: Merrill/Prentice Hall.
THERESA L. EARLES-VOLLRATH AMERICAN SIGN LANGUAGE (ASL) American Sign Language (ASL) is a special visual language that has existed for over 200 years. ASL relies on visual/manual properties and requires visual perception for decoding and encoding. The production of ASL involves movement in space and is formed using hands, body, and facial expressions. Individuals are able to communicate the meaning of a concept through a single sign or combination of signs. ASL has been compared and contrasted to many other languages and is reported as having a similar structure, however it varies greatly from the English language (which has auditory/spoken properties). A key difference from other languages is the way in which ASL is acquired. ASL is usually learned through a peer transmission process, rather than through the passing on of a language from generation to generation within families. The most fluent users of ASL are children who have deaf parents and children who have attended schools for the deaf or residential schools. RASCHELLE THEOHARRIS AMERICANS WITH DISABILITIES ACT (ADA) The most comprehensive legislation that protects the rights of individuals with disabilities is the Americans with Disabilities Act (ADA). This legislation applies to both public and private sectors, including libraries, state and local governments, restaurants, hotels, theaters, transportation systems, and stores (Fleischer & Zames, 2001). Prior to ADA, several laws served as the driving force in the creation of the Americans with Disabilities Act. The Civil Rights Act of 1964 prohibited discrimination based on race, color, sex, religion, and national origin in employment, public accommodations, and the provision of state and local government services. A decade later in 1973, the Federal Rehabilitation Act protected the civil and constitutional rights of people with disabilities. Section 504 of the Federal Rehabilitation Act of 1973 prohibited against discrimination of people with disabilities involved in a program or activity receiving federal assistance. Both of these laws guaranteed that people with disabilities would not be discriminated against in certain areas of their life, such as in being served at lunch counters, bus stations, and as recipients of federal assistance. However, these laws did not protect people with disabilities who sought employment where the company did not receive federal funding or assistance. The Americans with Disability Act provided this protection by regulating the rights of people with disabilities in the public and private sectors. ADA provided full 6
AMYGDALA
citizenship, independent living, and economic self-sufficiency for people with disabilities, assuming equality of opportunity (Turnbull, Turnbull, Shank, & Leal, 1999) as well as the accommodations needed in public places for people with disabilities to use. COMPONENTS OF THE AMERICANS WITH DISABILITIES ACT As stated in Section 3 of the Americans with Disabilities Act, disability is defined as (a) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (b) a record of such an impairment; or (c) being regarded as having such an impairment (ADA, 1990). In addition, ADA also applies to those who have an association with an individual known to have a disability (such as a parent) as well as those who are coerced or subjected to retaliation for assisting people with disabilities. ADA is divided into five titles. Title 1, or Employment, addresses business accommodations, such as restructuring jobs, altering the layout of workstations, or modifying equipment. Applying for a job, hiring, pay, and benefits are also covered under Title I. Title II, or Public Services, includes state and local government, public transportations systems, and other commuter authorities. The third title, or Public Accommodations, gives rules and regulations to all new construction and existing facilities to be accessible to all people with disabilities. This includes hotels, restaurants, grocery stores, and privately owned transportation systems. Title IV, or Telecommunications, regulates that all telecommunication companies offering telephone service must have telephone relay services for individuals with disabilities. The final title, or Miscellaneous, includes a provision prohibiting coercion or threatening people with disabilities from asserting their rights under ADA or retaliating against those that speak up for their rights. REFERENCES Americans with Disabilities Act, 42 U.S.C. §§ 12101-12213 (1990). Fleischer, D. Z., & Zames, F. (2001). The disability rights movement: From charity to confrontation (pp. 88–109). Philadelphia: Temple University Press. Turnbull, A., Turnbull, R., Shank, M., & Leal, D. (1999) Exceptional lives: Special education in today’s schools. (2nd ed.) Upper Saddle River, NJ: Prentice Hall.
MELISSA L. TRAUTMAN AMINO ACIDS Amino acids are the building blocks of proteins. There are approximately 80 naturally occurring amino acids, of which 20 are necessary for human growth and health. The body is capable of producing some amino acids in the liver, but others must be obtained from food. Some food proteins contain all the necessary amino acids and are therefore considered to be complete proteins such as milk, cheese, eggs, and meat. Vegetables and grains are considered incomplete proteins. BRUCE BASSITY AMYGDALA A brain structure located deep in the temporal lobes, the amygdala is involved in perceiving threats and producing a response to such threats. It receives input directly and quickly from sensory pathways as well as from other areas of the brain that filter 7
ANALYSIS OF BEHAVIORAL FUNCTION
the sensory input and put it into context so an appropriate response can be made. The amygdala is part of the limbic system. BRUCE BASSITY ANALYSIS OF BEHAVIORAL FUNCTION Analysis of behavioral function is a process of determining the function of a challenging behavior. This is a data-driven process that often includes direct observation and the use of formal assessment measures designed to assess behavioral functions. These tools are used to form a hypothesis regarding the function of the behavior; this hypothesis is tested with the implementation of strategies designed to replace the undesirable behavior with appropriate behavior. JEANNE HOLVERSTOTT ANALYSIS OF SENSORY BEHAVIOR INVENTORY–REVISED EDITION The Analysis of Sensory Behavior Inventory–Revised (ASBI-R; Morton & Wolford, 1994) is designed to collect information about an individual’s behaviors as they are related to sensory stimuli. It assesses six sensory areas and is designed to evaluate both sensory-seeking and sensory-avoidance behaviors within each modality. The ASBI-R can be completed by anyone who is familiar with the individual and may be done individually or by a group. Results may be used to develop effective intervention strategies and accommodations. REFERENCE Morton, K. & Wolford, S. (1994). Analysis of Sensory Behavior Inventory–Revised. Arcadia, CA: Skills with Occupational Therapy.
LISA ROBBINS ANECDOTAL REPORT The anecdotal report is a technique used to describe behavior. An observer watches a person or group of people and writes down what they observe during a specified time period. This provides rich information about behavior and should also include a description of the setting, what others say and do, and time notations. FURTHER INFORMATION Alberto, P. A., & Troutman, A. C. (2003). Applied behavior analysis for teachers (6th ed). Upper Saddle River, NJ: Merrill/Prentice Hall.
PAUL G. LACAVA
AND
RASCHELLE THEOHARRIS
ANGELMAN SYNDROME Angelman syndrome is a rare (approximately 1 in 25,000 births) genetic disorder that results in severe neurological problems. It is named after Dr. Harry Angelman, the pediatrician who discovered the common traits evident in three of his patients. He first named it ‘‘Happy Puppet’’ syndrome, based on several features characteristic to the three children. Over the years, the name was changed to the more respectful ‘‘Angelman syndrome.’’ 8
ANGELMAN SYNDROME
Angelman syndrome is caused by one of several problems with gene material on chromosome 15. One of the most common is a deletion or ‘‘turning off’’ of some genes from the maternal chromosome 15. There may also be a mutation of this particular genetic material, or a double portion from the father’s chromosome 15, or an imprinting defect, and in some cases, there is no apparent cause found on chromosome 15. Common prenatal tests cannot bring these genetics problems to light. It is difficult to detect Angelman syndrome from birth to about three months of age. As these babies develop and grow, the identifiable characteristics become apparent. Since this is a syndrome, and there are varying problems on chromosome 15, not all features will be present in each child with Angelman syndrome. Some children may be more or less affected than others. The most frequently cited characteristics include: ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥
Little or no spoken language, although receptive language may be somewhat better Unusually affectionate Very happy affect, including bursts of laughter and giggling Severe developmental delays (mental retardation) Disjointed, awkward gait and large muscle movements Some unusual features, including a distinct mouth, protruding tongue, and somewhat flattened head Seizures of all kinds Sleep problems such as insomnia Impulsive behaviors, extreme hyperactivity Dual diagnosis of autism Misdiagnosed as having cerebral palsy, autism, etc. Obsessions with water
There is no cure or remediation for Angelman syndrome, although use of best practices in a well-designed and implemented IEP via special education services can ensure a brighter future than was previously imagined possible. Use of augmentative and alternative communication systems such as the Picture Exchange Communication System, signing, and/or communication devices all can improve quality of life. Use of behavioral strategies that include applied behavior analysis and positive behavior supports can be used to teach new skills as well as help the individual learn to control disruptive behaviors. Making environmental changes that can help with impulsive behaviors and ensure personal safety can make it easier for the individual with Angelman syndrome to enjoy family, school, and community life. Students with Angelman syndrome can be included in neighborhood schools with special education supports; some can participate in athletic and leisure activities shared by the rest of the family. Due to impulse problems that impact sleeping and safety issues as well as extreme cognitive delays, they most likely will require constant supervision and not be able to live unassisted. Parents report some of their greatest challenges as being sleep deprived due to their child’s insomnia, finding the proper medications for seizures, continual household chaos caused by the child’s hyperactivity, and teaching toileting skills. Again, getting good behavioral and medical supports to help with some of the traits of Angelman syndrome can vastly improve the quality of home life for the entire family. 9
ANIMAL ASSISTED THERAPY/ASSISTANCE DOG PLACEMENTS FOR CHILDREN WITH AUTISM
See also augmentative and alternative communication; Picture Exchange Communication System. FURTHER INFORMATION Angelman Syndrome Foundation; 3015 E. New York Street, Suite A2265; Aurora, IL 60504; Phone: 1-800-432-6435; Fax: 630-978-7408; E-mail:
[email protected].
ANN PILEWSKIE
ANIMAL ASSISTED THERAPY/ASSISTANCE DOG PLACEMENTS FOR CHILDREN WITH AUTISM Intelligent selection of a canine partner is of central importance in creating a successful assistance dog placement for a child on the autism spectrum. The job description of a dog slated to work with a child with autism should be individually tailored to meet the unique needs of the child; the training of the dog, as well as the teaching of the child, should be positive, not corrections based, and should move in tandem with both the dog’s and the child’s natural development. Educated parental involvement, appropriate temperamental fit, and proper supervision of the child-dog team are all essential elements in creating an assistance dog placement that is safe as well as effective. Creating assistance dog placements for children on the autism spectrum differs from creating placements between assistance dogs and physically challenged adults. Specific task training takes a back seat to being certain the assistance dogs selected are safe and social companions to the children on the autism spectrum that they will serve. The primary emphasis in selecting an assistance dog must be on achieving a correct temperamental fit between the child and the puppy, along with having the puppy’s early socialization dovetail with his or her future role. Without specific exposure to the profile of a child with autism, a puppy has no clue as to how to interpret autistic behaviors and therefore may react unpredictably. Children with autism may throw loud tantrums or fail to grant the body space that we unconsciously and consistently grant each other. Dogs depend greatly on nonverbal communication, and are apt to be uncomfortable with a child’s violation of their ‘‘personal space’’ or with a child’s unusual sounds or movements; but with proper communication and appropriate early socialization, a puppy can easily learn to interpret a child’s unusual behavior as positive events that are predictive of reward. Considerable energy should also go into teaching the child to interact appropriately with his or her dog. As the quality of the relationship they share matters more than any other variable, the communication between the puppy and child must be properly facilitated. The same difficulties with communication that children with autism experience with people can exist with dogs as well, as dogs take their cues from humans regarding how relationships are structured. It is important for the caretakers of a child with autism to understand that their role is to ensure that the relationship between child and puppy is consistently gentle and mutually enjoyable. The concept of ‘‘time out’’ with an assistance dog reliably holding a down-stay position to provide comfort and support can be a positive way for a child with autism to regain control over his emotions, as research has shown the mere presence of a trusted 10
ANIMAL ASSISTED THERAPY/ASSISTANCE DOG PLACEMENTS FOR CHILDREN WITH AUTISM
dog can have a calming effect on a child. Use of the assistance dog can be preventive, as a dog may be employed as part of a structured activity to reduce stress and avoid meltdowns. Assistance dogs can be used to help meet other therapeutic goals, such as those established in occupational or physical therapy, either directly, such as being brushed or fed by his or her child, or simply by providing motivation. (One little girl took a break to pet her North Star dog after every 10 repetitions of a particularly grueling exercise.) Children with autism often have great difficulty in generalizing learned speech to new situations and people, due to their overly selective attention and tendency to respond to only a limited number of cues; using an assistance dog as a tool for teaching pragmatic language at home as well as in the community can be as simple as rehearsing stock responses to the fairly predictable questions people are likely to ask when they see a well-trained dog wearing a vest with a patch that reads ‘‘Please Ask to Pet Me.’’ As children with autism tend to be dependent on verbal cues provided by others, this positive and predictable social response is a valuable tool to help develop speech within natural settings in the home as well as the outside community. It should also be noted that people who may have shied away from the responsibility of starting a conversation with a child with autism, as well as maintaining it, often relax and rise to the challenge when a dog is available to help structure the questions and comments. Occasionally an assistance dog can also provide a safety role for a child with autism, either by being trained to deliver a warning bark when a child with autism wanders away or to shadow his or her charge (in which case a global positioning device and an easy-to-read name tag attached to the dog’s collar may well help a nonverbal child to be safely returned home). A technique known as blocking is also being developed at North Star Foundation; this technique can only be employed if a child is small enough in comparison to the dog to be safely blocked when in flight. National Service Dogs (NSD) in Canada tethers assistance dogs to some children with autism who are prone to running off, but this method of keeping a child safe can only be employed if the child is small enough to be physically stopped by the weight of the assistance dog. Unfortunately, some children are not good candidates for placements involving a dog, such as children who are aggressive. Some children with poor impulse control may still be appropriate candidates for an older, more stable dog with the necessary guidance and supervision, but in general children who tend to lash out physically are not good candidates for an assistance dog unless such tendencies are brought under strict control. For the right child on the autism spectrum, a properly selected and trained canine companion can be a valuable tool in helping to achieve social, emotional, educational, and safety goals. FURTHER INFORMATION Gross, P. D. (2006). The golden bridge: A guide to assistance dogs for children challenged by autism or other developmental disabilities. West Lafayette, IN: Purdue University Press. McNicholas, J., & Collis, G. M. (1995). Relationships between young people with autism and their pets. Paper presented at the 7th International Conference on Human-Animal Interactions, Animals, Health and Quality of Life, September 6–9, 1995, Geneva, Switzerland. North Star Foundation: www.NorthStarDogs.com E-mail:
[email protected]. Toeplitz, Z., Matczak, A., Piotrowska, A., & Zygier, A. (1995). Impact of keeping pets at home upon the social development of children. Paper presented at the 7th International Conference on
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ANNUAL GOAL Human-Animal Interactions, Animals, Health and Quality of Life, September 6–9, 1995, Geneva, Switzerland.
PATTY DOBBS GROSS ANNUAL GOAL A required component of the Individualized Education Program, annual goals is a statement of desired educational attainment for an individual student that is written based on information from the present level of educational performance. Annual goals must be written in measurable terms, include the skill or behavior to be achieved and direction for the behavior. They are written for a 1-year period and must contain either short term objectives or benchmarks. KATHERINE E. COOK ANTECEDENT The antecedent is the behavior that precedes a given situation or behavior. Since behavior cannot occur in isolation, what occurs in the environment before the behavior (the antecedent) and after the behavior (the consequence) is often key to addressing or changing the behavior. The antecedent may provide insight into the purpose or function of behavior. For this reason, most functional behavior assessments include the observation and recording of antecedents, such as on an Antecedent-BehaviorConsequence (ABC) Analysis. KATIE BASSITY ANTECEDENT-BEHAVIOR-CONSEQUENCE (ABC) ANALYSIS Antecedent-Behavior-Consequence analysis was first described by Bijou, Peterson, and Ault (1968) as anecdotal observation, a process of analyzing the events that precede and follow a behavior. The conditions may be modified to change the behavior. REFERENCE Bijou, S. W., Peterson, R. F., & Ault, M. H. (1968). A method to integrate descriptive and experimental field studies at the level of data and empirical concept. Journal of Applied Behavior Analysis, 1, 175–191.
JEANNE HOLVERSTOTT ANTIANXIETY MEDICATIONS Antianxiety medications include various drug classes that are used depending on the severity of anxiety, length of treatment, and age. Drugs that have a mild sedative effect and are short acting such as hydroxyzine (Atarax) or diphenhydramine (Benadryl) are commonly used for short-term relief. Hypnotics like benzodiazepines (Valium family) are used along with some others for more significant agitation. A number of the newer selective serotonin reuptake inhibitors (SSRI) and antidepressants also have antianxiety properties and are specifically indicated for treatment of various kinds of anxiety. See also antidepressant medications. BRUCE BASSITY 12
ANXIETY DISORDERS
ANTIBIOTICS Antibiotics are medications used to treat infectious disease. This may involve treatment to eliminate microorganisms causing acute infection, or prevention or maintenance of a less acute or chronic infection. Antibiotics may be broad spectrum (effective against many different microorganisms), or narrow spectrum (specific for just a few microorganisms). Antibiotics may be used in oral, injectable, intravenous, or topical form. BRUCE BASSITY ANTIDEPRESSANT MEDICATIONS A variety of medications are prescribed to alleviate the signs and symptoms of depression and some have additional uses as well. The most prescribed class of these is known as selective serotonin reuptake inhibitors (SSRI) such as paroxetine (Paxil), fluoxetine (Prozac), and sertraline (Zoloft). Older antidepressants that are less used include tricyclics (TCA) and monoamine oxidase inhibitors (MAOI). There are additional older and newer groups as well. Most antidepressants alter neurotransmitter activity, specifically serotonin, norepinephrine and dopamine. BRUCE BASSITY ANTIPSYCHOTIC MEDICATIONS These medications are most commonly used for treating conditions such as schizophrenia, but some of the newer medications have broader uses. There are three categories: (a) typical, which are the oldest medications and include chlorpromazine (Thorazine), haloperidol (Haldol), and fluphenazine (Prolixin); (b) atypicals, which include clozapine (Clozaril), ziprasidone (Geodon), risperidone (Risperdal), quetiapine (Seroquel), and olanzapine (Zyprexa); and (c) others, which includes aripiprazole (Abilify). All of these medications can have potentially serious side effects, some of which can be irreversible. Careful monitoring is required by the healthcare provider. BRUCE BASSITY ANXIETY DISORDERS Anxiety disorders include social phobia, obsessive compulsive disorder, posttraumatic stress disorder, and generalized anxiety disorders. Social phobia (or social anxiety disorder) is characterized by marked and substantial distress or discomfort in social situations such as meeting new people, appearing for interviews, and speaking in public. For something to be considered a phobia, the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000) states that for individuals under 18 years of age, the fear must persist for at least 6 months and be intense enough to interfere with normal activities. Children may not complain about their fears, but when placed in the feared situation may express their anxiety by crying, having tantrums, freezing, or clinging. Adolescents and adults are more likely to experience a panic attack—several minutes of terror where they feel they are about to have a heart attack, lose control or ‘‘go crazy’’ (Gelfland, Jensen, & Drew, 1997, p. 174). A diagnosis of social phobia should not be made in an individual with an autism spectrum disorder because degrees of anxiety are often present in this 13
ANXIETY DISORDERS
population. However, there may be occasions when the distress and symptoms are so severe that diagnosis and treatment beyond the autism spectrum disorders are warranted. Obsessive compulsive disorder (OCD) is a condition where either obsessions (abnormal thoughts, impulses or images) or compulsions (repetitive acts that the individual feels they must complete) or both are present. DSM-IV-TR (APA, 2000) states that they must also meet the following: (a) are unrealistic and dysfunctional, (b) are experienced as unwelcome but irresistible, (c) are experienced as products of one’s own mind and not external in origin, (d) are ritualistic and stereotyped, (e) are timeconsuming, taking more than 1 hour each day, and disrupting other activities. Typical obsessive themes by school-age children involve aggression, contamination, and maintaining order (Clarizio, 1991), and both children and adults are more likely to engage in rituals at home rather than in public. Obsessions and ritualistic behaviors are often seen in autism spectrum disorders but do not usually meet the specific criteria for OCD as previously outlined and would not warrant a separate diagnosis of OCD in the majority of cases. Posttraumatic stress disorder (PTSD) is an anxiety disorder that develops following a traumatic experience such as witnessing a severe accident, assault, natural catastrophe, life-threatening illness, and sexual or physical abuse. PTSD can develop immediately following the event, but may appear months or years afterwards. Primary symptoms in children include agitated and disorganized behavior, re-enacting of the traumatic event or avoidance of anything associated with it, difficulty sleeping, irritability, attention problems, exaggerated startle responses, and hypervigilance. Children may also show physical symptoms such as stomach aches or headaches, regression, loss of toilet training, or clingy behaviors. Generalized anxiety disorder (GAD) consists of uncontrollable, excessive anxiety and worry, occurring consistently for at least 6 months, and pervasive in that it covers several events or activities. Other characteristics required for the diagnosis include irritability, restlessness, fatigue, muscle tension, concentration difficulties, or sleep disturbance. According to Beidel, Christ, and Long (1991), the persistent disorder in childhood usually begins around 10 years of age and often co-occurs with depression. While many difficulties with anxiety can be seen in children and adults with autism spectrum disorders, the differentiation here is due to the specificity of the anxiety difficulties. Usually, therefore, anxiety disorders are not given as co-morbid diagnoses to ASD except in circumstances where the impact of the anxiety difficulties has become so pervasive and interfering with normal functioning that additional diagnosis and anxiety treatment measures are appropriate. Treatments for anxiety disorders include psychotherapy and pharmacological treatments (Gelfland et al., 1997, pp. 170–192). REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Beidel, D. C., Christ, M. G., & Long, P. J. (1991). Somatic complaints in anxious children. Journal of Abnormal Child Psychology, 19, 659–670. Clarizio, H. F. (1991). Obsessive-compulsive disorder: The secretive syndrome. Psychology in the Schools, 28, 106–115.
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APPLIED BEHAVIOR ANALYSIS (ABA) Gelfland, D. M., Jensen, W. R., & Drew, C. J. (1997). Understanding child behaviour disorders (3rd ed.). Orlando: Harcourt Brace.
FURTHER INFORMATION Csoti, M. (2003). School phobia, panic attacks and anxiety in children. London: Jessica Kingsley Publishers. March, J. S., & Mulle, K. (1998). OCD in children and adults. London: Guilford Press.
FIONA J. SCOTT APPLIED BEHAVIOR ANALYSIS (ABA) Applied Behavior Analysis (ABA) employs principles of learning theory to help people change behaviors and learn new skills (Cooper, Heron, & Heward, 1987). ABA is perhaps best known as an intervention for persons with autism spectrum disorders (ASD), but it is also used effectively for other populations, including children and adults with attention deficit hyperactivity disorder, conduct disorder, schizophrenia, and developmental delays. In addition, ABA is also used for teaching academic skills in both general and special education settings, for increasing productivity in the workplace, and for promoting healthy lifestyles. As defined originally by Baer, Wolf, and Risley (1968), the term applied means that ABA focuses on socially relevant outcomes. For example, when ABA interventions for individuals with ASD were initially developed in the 1960s and 1970s, a primary goal was to enable these individuals to move out of institutional settings such as state hospitals (Lovaas, Koegel, Simmons, & Long, 1973), where most lived at that time. Later ABA interventions centered on increasing opportunities for inclusion in community settings such as general education classes in public schools (Lovaas, 1987) and improving relationships with peers and caregivers (Koegel & Koegel, 2005). The term behavioral in ABA reflects an emphasis on measurable outcomes. According to Baer et al. (1968), any action that can be measured is a behavior. Thus, the defining features of ASD (problems with reciprocal social interaction, limited social communication, and intense repetitive behaviors or narrow interests) are all considered behaviors. In addition, associated features of ASD (characteristics such as delays in cognitive and self-help skills that are displayed by many but not all individuals with this diagnosis) are also viewed as behaviors. Finally, the term analysis as used indicates that decisions about interventions derive from an examination of data. Thus, ABA investigators conduct studies in which they systematically start and stop interventions to determine whether they reliably change behavior. Such research has identified an array of interventions that can help individuals with ASD. When ABA practitioners implement these interventions for a particular individual, they collect objective data to evaluate whether the interventions are working. ABA INTERVENTION STRATEGIES ABA studies show that many effective intervention strategies involve operant learning. Operant learning occurs in all humans and many other organisms. It takes place when an antecedent event sets the occasion for a behavior, and a consequent event either increases or decreases the likelihood that the behavior will occur again. An antecedent event is a change within the individual or in the external environment that occurs just prior to the behavior of interest and that acts as a trigger for the behavior. 15
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A consequent event is a change that immediately follows the behavior of interest. Consequent events that increase behavior are called reinforcers; consequent events that decrease behavior are said to result in extinction. For example, when a student with ASD sees an instructor (antecedent event), she may make eye contact and say, ‘‘Hi.’’ If the consequence is a smile and praise from the instructor (a reinforcer), the student is likely to greet the instructor in the future. However, if the instructor walks by without acknowledging the greeting, the student may not greet the instructor on subsequent occasions as the behavior was not reinforced. Two related forms of learning are modeling and rule-governed behavior. In modeling, the individual observes the antecedent-behavior-consequence relationship instead of experiencing it directly. Thus, a person with ASD might learn how to make greetings by observing two people greet each other. In rule-governed behavior, on the other hand, the individual is told about the antecedent-behavior-consequence relationship. For example, a person with ASD might learn about greetings by hearing an instructor explain, ‘‘When you greet others, it’s important to make eye contact and say ‘Hi’ or ‘Hello’ to show you’re interested.’’ To promote operant and related forms of learning, ABA practitioners often use prompting. Prompting involves systematically providing physical, gestural, or verbal guidance on performing a behavior in response to a cue. Prompts are gradually reduced and eventually eliminated as the individual masters the behavior. Other common procedures include task analysis, which consists of breaking down a complex skill into smaller steps; then chaining, in which steps are taught separately and subsequently linked together; and shaping, in which successive approximations of a behavior are taught. For example, eye contact may be shaped by reinforcing the individual first for casting fleeting glances in the general direction of the communicative partner, and then increasingly for better accuracy and sustained lengths of time. The shaping process may also be extended to more advanced skills, such as looking back and forth between another person and an object or activity of mutual interest (a skill called joint attention), modulating eye contact during conversations, and alternating gaze among several communication partners. ABA FOR TEACHING NEW SKILLS Many ABA strategies have been designed to promote learning in individuals with ASD of all ages and developmental levels. Some strategies are highly structured. For example, discrete trial teaching (DTT) simplifies instruction as much as possible by breaking down learning trials into their component parts and carefully planning how to implement each (Smith, 2001). The instructor begins each discrete trial with a brief instruction or cue (referred to as a discriminative stimulus), which may include a prompt. The person with ASD then gives a response. The instructor immediately gives a consequence—corrective feedback for an incorrect response or positive reinforcement such as praise or access to preferred objects for a correct response. After this exchange, which typically lasts only seconds, there is a brief pause (intertrial interval) before the next trial. During DTT, an instructor often minimizes distractions by working individually with a person with ASD in a setting away from other activity. Other ABA strategies include incidental teaching, which makes use of a person’s motivation for preferred items or activities to encourage communication or social 16
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initiations (Fenske, Krantz, & McClannahan, 2001). It is usually embedded into naturally occurring activities throughout the day such as work time, play centers, or snack. During these activities, the instructor generally withholds a preferred item, thereby creating an opportunity for the person with ASD to use language to request it. For example, if a child is putting together a favorite puzzle, the instructor may withhold a puzzle piece so that the child is apt to request it. The instructor may prompt the child by asking, ‘‘What do you want?’’ or simply waiting expectantly. Additional ABA strategies involve providing instruction to groups rather than to one individual (Heflin & Alaimo, 2006), or having an individual work alone by following instructions presented in pictures, written words, or audio-taped recordings (McClannahan & Krantz, 1998). Having typically developing peers serve as models or tutors for the individual with autism is another commonly used approach (Strain & Schwartz, 2001). Across all strategies, the aim is to provide opportunities to learn new skills and to have positive interactions with instructors. Contemporary ABA programs blend these various strategies, rather than relying exclusively on any one approach, in an effort to individualize interventions and optimize outcomes. ABA FOR CHALLENGING BEHAVIORS Sometimes a goal of ABA treatment is to decrease or eliminate challenging behaviors while teaching more appropriate skills (Horner, Carr, Strain, Todd, & Reed, 2002). Through assessment methods such as interview and direct observation, ABA practitioners seek to identify the various functions that challenging behaviors serve. For example, some students are especially likely to display challenging behaviors when requests are made of them, indicating that the function of the behavior is to escape or avoid requests. Others exhibit challenging behaviors when they cannot immediately get something they requested, suggesting that the function is to gain access to preferred objects or activities. After identifying a possible function, practitioners can develop individualized interventions. One aspect of the intervention is to reinforce behaviors that are alternatives to or incompatible with the challenging behavior. For example, if the challenging behavior is screaming and the function is getting attention from others, the student might be reinforced for raising his hand, or for a behavior such as pulling objects off shelves, the student might be reinforced for putting her hands in her pockets. Along with reinforcing alternative behaviors, ABA practitioners may withhold reinforcement for the challenging behavior. For example, they may praise the student for raising his hand but not for screaming. Alternatively, they may respond to screaming by placing the student in time-out, where no reinforcement is available, for a time. Another intervention is overcorrection, in which the student restores the environment to a state better than it was before the challenging behavior occurred. For example, if a student throws a drink on the floor, she may be directed to clean up the spill and the surrounding area. A token economy combines procedures for reinforcing appropriate behavior and withholding reinforcement for challenging behavior. In this system, a student can earn tokens for appropriate behavior and cash them in for a reinforcer such as additional time with a favorite peer. Conversely, he may lose a token for challenging behaviors such as aggression (a procedure called response cost). All of these strategies for 17
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reducing challenging behavior are most successful when implemented in conjunction with instruction and reinforcement for more appropriate behaviors. MODELS FOR IMPLEMENTING ABA Some ABA intervention models for persons with ASD are comprehensive, designed to address all areas of need. Others are directed toward a more circumscribed, specific set of goals. One comprehensive approach is early intensive behavioral intervention (EIBI). Applied with children under 5 years old, EIBI typically consists of 20–40 hours weekly of ABA treatment, much of it involving one-to-one instruction (Handleman & Harris, 2001). EIBI often occurs in the home or child-care setting, with active participation from parents and others in that setting, and may be employed for two to three years. Studies indicate that EIBI can yield significant gains such as increases in IQ and other standardized test scores, along with increased access to special education services (Smith, Groen, & Wynn, 2000). However, additional research is necessary to confirm these exciting findings. Comprehensive ABA treatment programs for older children and adults with ASD take place in specialized classrooms or occupational settings (Handleman & Harris, 2006; Holmes, 1997). Such programs usually mix individual and group instruction throughout the day. The learner may spend a portion of the day engaged in one-toone, individualized instruction to pre-teach or review skills to be addressed later in the day during group instruction and spend other portions of the day in typical academic group activities. Research shows that persons with ASD in these programs learn many new skills. Still, little information is available on long-term outcomes such as whether graduates of the programs succeed afterward in less specialized settings. Specific skill models may involve working directly with persons with ASD in a particular area (e.g., social interaction) or training parents, peers, or personnel in educational or occupational settings to implement ABA interventions. Training typically includes instruction on characteristics of ASD, assistance with identifying skills to teach, guided practice in applying ABA methods, direction on how to collect data on the effects of intervention, and establishment of a system for communication and collaboration between the intervention setting and home. Many studies document that, with training, parents, peers, and educators can become proficient at implementing ABA interventions under supervision of a professional ABA practitioner. CURRENT STATUS AND FUTURE DIRECTIONS Though not a cure for ASD, ABA is an effective approach to teach many new skills and alleviate challenging behaviors. As a result, it has become an important intervention for persons with ASD. Research continues on how to enhance its effectiveness. REFERENCES Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1, 91–97. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Columbus, OH: Merrill/Prentice Hall. Fenske, E. C., Krantz, P. J., & McClannahan, L. E. (2001). Incidental teaching: A not discrete trial teaching procedure. In C. Maurice, G. Green, & R. M. Foxx (Eds.), Making a difference: Behavioral intervention for autism (pp. 75–82). Austin, TX: Pro-Ed.
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ART THERAPY Handleman, J. S., & Harris, S. L. (2006). School-age education programs for children with autism. Austin, TX: Pro-Ed. Handleman, J. S., & Harris, S. L. (Eds.). (2001). Preschool programs for children with autism (2nd ed.). Austin, TX: Pro-Ed. Heflin, L. J., & Alaimo, D. F. (2006). Students with autism spectrum disorders. Upper Saddle River, NJ: Merrill/Prentice Hall. Holmes, D. L. (1997). Autism through the lifespan: The Eden model. Bethesda, MD: Woodbine House. Horner, R. H., Carr, E. G., Strain, P. S., Todd, A. W., & Reed, H. K. (2002). Problem behavior interventions for young children with autism: A research synthesis. Journal of Autism and Developmental Disorders, 32, 423–446. Koegel, R. L., & Koegel, L. K. (2005). Pivotal response treatments for autism: Communication, social & academic development. Baltimore: Brookes Publishing Co. Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9. Lovaas, O. I., Koegel, R., Simmons, J. Q., & Long, J. S. (1973). Some generalization and follow-up measures on autistic children in behavior therapy. Journal of Applied Behavior Analysis, 6, 131–166. McClannahan, L. E., & Krantz, P. J. (1998). Activity schedules for children with autism: Teaching independent behavior. Bethesda, MD: Woodbine House. Smith, T. (2001). Discrete trial training in the treatment of autism. Focus on Autism and Related Disorders, 16, 86–92. Smith, T., Groen, A., & Wynn, J. W. (2000). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 104, 269–285. Strain, P. S., & Schwartz, I. (2001). ABA and the development of meaningful social relations for young children with autism. Focus on Autism and Related Disorders, 16, 120–128.
CHRISTINE R. PETERSON
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TRISTRAM SMITH
APRAXIA Apraxia is the inability to plan, organize, and carry out a physical, motor action. Individuals with apraxia may have difficulty putting on their shoes, climbing on play equipment, or skipping. KELLY M. PRESTIA ART THERAPY During the 1940s, psychiatrists became more interested in the artwork of their mentally ill patients. About the same time, educators became interested in their students’ work as it showed differences in development (cognitive and emotional). As popularity grew, art therapy began being offered alongside traditional psychoanalytic therapy programs. It is through the creative process that art therapy has grown to be used in the assessment and treatment of individuals with various disorders as well as for promoting wellness. Art therapy is a mental health profession that uses art and the creative process to improve the lives of the clients who are served. These clients range in ages (from children to older adults), and levels of wellness. Art therapy combines the areas of human development, visual arts, and counseling. It can be utilized with diagnoses such as depression, anxiety, mental illnesses, addiction, relationship issues, abuse and domestic violence, disability, loss, and medical illnesses. 19
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In order to enter into the art therapy profession, completion of a master’s degree in art therapy or with an emphasis on art therapy is required. The Art Therapy Credentials Board (ATCB) is the credentialing agency that defines the requirements for certification. In order to be considered a registered art therapist (ATR or ATR-BC) 1,000 hours of direct client contact must be accrued after graduation. The national organization for art therapists is the American Art Therapy Association, Inc. (AATA). This professional organization defines and regulates the educational, professional, and ethical standards for art therapists. A separate entity, the Art Therapy Credentials Board (ATCB) awards registration as an art therapist (ATR) and after passing a written examination confers the credentialing of a board-certified art therapist (ATR-BC). This credential must be maintained with continuing education hours (American Art Therapy Association, 2006). Art therapists work in a variety of settings including hospitals, mental health facilities, residential treatment centers, shelters, schools, correctional facilities, nursing homes, private practice, and art studios. Art therapists may work independently or as part of a treatment team. In addition, treatment settings vary from individual sessions to group placements. REFERENCE American Art Therapy Association, Inc. (2006). Retrieved July 24, 2006 from www.arttherapy. org/about.html.
LYNN DUDEK ASPERGER, HANS Hans Asperger (February 18, 1906–October 21, 1980) was an Austrian pediatrician who published the seminal research on the disorder that is now called Asperger syndrome. In his original findings, he noted that four boys from his clinical practice exhibited distinctive characteristics that he labeled as autistischen psychopathen. Asperger identified the traits within this disability as: (a) social isolation and awkwardness, (b) self-stimulatory responses, (c) insistence on environmental sameness, (d) normal intellectual development, and (e) normal communication development. See also Asperger’s disorder. FURTHER INFORMATION Frith, U. (1991). Autism and Asperger syndrome. Cambridge: Cambridge University Press.
TERRI COOPER SWANSON ASPERGER’S DISORDER Like all autism spectrum disorders, Asperger’s disorder (or Asperger syndrome) involves difficulties in three major areas: social interaction, communication, and behavior (Wing & Gould, 1979). While lower-functioning individuals with autism might show little desire for social interaction and spontaneous communication, those with Asperger’s disorder are typically quite verbal, and often eager to share information. It is the unusual quality of their language, their poor social skills, and their unusual habits or behaviors that distinguishes them. Because the symptoms are more subtle than those of classic autism, most children with Asperger’s disorder are not diagnosed until elementary school, or even much later (Attwood, 1998). 20
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There is a certain amount of debate among experts today about what, exactly, constitutes Asperger’s disorder. The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000), which publishes the official criteria used by psychologists and psychiatrists in the United States, uses much of the same language to describe Asperger’s disorder and Autistic disorder (e.g., at least two symptoms of ‘‘impairment in social interaction’’ and one symptom of restricted, repetitive interests or behaviors). However, to receive the Asperger’s diagnosis, the individual may not have mental retardation and may not have had a significant delay in learning to talk. Given those criteria, many argue that Asperger’s is not, in fact, a separate disorder in itself, but a form of high functioning autism. Other experts argue, however, that Asperger’s disorder has more distinct characteristics than those covered in the DSM-IV-TR criteria. Commonly mentioned ones include poor social skills, special interests, language peculiarities, sensory processing difficulties, gross and fine motor problems, and difficulties with self-help and organizational skills. SOCIAL SKILLS While small children with Asperger’s disorder may initially show little interest in playing with other children, they are generally described as being very attached to parents and family members. Older children and adults with Asperger’s generally do want to establish friendships and relationships—but they lack the knowledge to do so. Others may view them as quirky, shy, or, in some cases, even frightening. This is due to the fact that while most people automatically develop an understanding of social rules and nonverbal communication, people with Asperger’s disorder do not. They need to be explicitly taught. LANGUAGE Children with Asperger’s disorder are often described as sounding like ‘‘little professors’’ because of their often extraordinary vocabularies and their tendency to lecture. While their speech may be superficially perfect, they often tend to be overly literal in their use and interpretation of language. Metaphors and idioms (e.g., ‘‘beating a dead horse’’) might be baffling. Others’ inexact use of language, such as Mom asking, ‘‘Would you mind getting that?’’ when she really means ‘‘Get that!’’ can cause frustration and anger. The pragmatics (social aspects) of speech—such as the ability to carry on back-and-forth conversations—often do not come naturally to people with Asperger’s, and must be explicitly taught. One distinctive language feature of many individuals with Asperger’s disorder is their love of perseverative scripting—telling the entire story line of, say, a cartoon, video game, or movie, over and over again, complete with exact dialogue and, sometimes, speech inflections and accents. SPECIAL INTERESTS Individuals with Asperger’s disorder often have one or more all-encompassing special interests. These interests go far beyond those of a normal hobby, and can interfere with social skills, academics, and work. The amount of information on a particular topic that an individual with Asperger’s may acquire can be quite staggering. Sometimes the area of interest may be typical for their age group—for example, baseball scores, video games, or cartoons—but the degree of interest sets the person with Asperger’s apart. Other interests can be quite unusual, such as vacuum cleaners or 21
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train schedules. When the person reads or views the same material over and over again, this is a form of perseveration. DESIRE FOR SAMENESS While many people love surprises, individuals with Asperger’s typically crave consistency. ‘‘Sameness’’ seems to provide comfort and security in a world with so many unwritten rules to decipher. Parents and teachers report that a change in routine— even a ‘‘fun’’ one like a party or school assembly—can often trigger a ‘‘meltdown’’ in a child with Asperger’s disorder. SENSORY AND MOTOR DIFFICULTIES Many individuals with Asperger’s disorder seem to be overly sensitive to light, sound, noise, smells, and/or touch. Clothing, especially tags and sock seams, may cause discomfort for them. Others seem to be less sensitive to sensory input than the average person, and not even notice, say, a scraped knee that would set another child crying. Some seek out unusual sensory activities, such as spinning. These are all examples of difficulties with sensory integration dysfunction (also known as sensory processing dysfunction). Many people with Asperger’s also have difficulties with gross motor skills (e.g., running, jumping, riding a bicycle) and tend to be clumsy. Some also have difficulty with fine motor skills, such as handwriting. SELF HELP AND ORGANIZATIONAL SKILLS Contrary to the DSM-IV-TR (APA, 2000) criteria, clinicians today report that most individuals with Asperger’s disorder have difficulties in self-help skills and adaptive behavior (Attwood, 2006). These difficulties extend logically from the other difficulties characteristic of individuals with Asperger’s. For example, tying shoes and getting dressed require fine motor skills; shopping at the supermarket requires an ability to adapt to change (as groceries are often rearranged, or out of stock) and often some social interaction at the cash register. Going from class to class in middle school requires tolerating loud noise, being bumped into, and other students behaving in unpredictable ways. Many people with Asperger’s disorder also have difficulties with executive functions (e.g., organizing and planning skills). Not every person with Asperger’s disorder manifests the same characteristics in number or degree. Therefore, it is important to keep in mind that Asperger’s disorder is a spectrum disorder, ranging from relatively mild to quite severe. One person might be so impaired that he or she is unable to live independently, while another might be able to hold down a job—even be quite talented and successful at it—but still have significant difficulties in interpersonal relationships. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Attwood, T. (1998). Asperger’s syndrome: A guide for parents and professionals. London: Jessica Kingsley Publishers. Attwood, T. Is there a difference between Asperger’s syndrome and high-functioning autism? Retrieved August 25, 2006, from http://www.tonyattwood.com.au. Wing, L. & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification, Journal of Autism and Developmental Disorders, 9, 11–29.
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FURTHER INFORMATION Myles, B. S., & Simpson, R. L. (2002) Asperger syndrome: An overview of characteristics. Focus on Autism and Other Developmental Disabilities, 17(3), 132–137. Myles, B. S., Barnhill, G. P., Hagiwara, T., Griswold, D. E., & Simpson, R. L. (2001). A synthesis of studies on the intellectual, academic, social/emotional and sensory characteristics of children and youth with Asperger syndrome. Education and Training in Mental Retardation and Developmental Disabilities, 36(3), 304–311. Powers, M. D. (2002). Asperger syndrome & your child: A parent’s guide. New York: Skylight Press.
LISA BARRETT MANN ASPERGER SYNDROME DIAGNOSTIC SCALE (ASDS) The Asperger Syndrome Diagnostic Scale (ASDS; Myles, Bock, & Simpson, 2000) is a norm-referenced measure that can help determine if a child or adolescent has Asperger syndrome. It is composed of 50 items, divided into five subscales: language, social, cognitive, sensory-motor, and maladaptive. Respondents indicate the presence or absence of certain characteristics in each area, and the resulting standard score shows the probability that the child or adolescent has s syndrome. Parents and teachers can complete the scale and share the results with their clinician. The ASDS can be also used with confidence to document behavioral progress as a consequence of special intervention programs, target goals for change and intervention of the child’s Individualized Education Program, and measure the characteristics of Asperger syndrome for research purposes. See also Asperger’s disorder; norm-referenced assessment. REFERENCE Myles, B. S., Bock, S. J., & Simpson, R. L. (2000). Asperger Syndrome Diagnostic Scale. Austin, TX: Pro-Ed.
SUSANA BERNAD-RIPOLL ASPERGER SYNDROME SCREENING QUESTIONNAIRE (ASSQ) The Asperger Syndrome Screening Questionnaire (ASSQ; Ehlers & Gillberg, 1993; Ehlers, Gillberg, & Wing 1999) was designed to screen for possible cases of Asperger syndrome or high-functioning autism in children. The ASSQ has cut-off scores for both parent and teacher ratings of the child’s behavior, and there have been a range of studies published highlighting the validity of the instrument. For parent ratings, the true positive rate (those who score as having Asperger syndrome or high-functioning autism on the instrument and who really do have the condition) is 62 percent with a false positive rate (those who score as having AS or HFA but who do not have the condition) of 10 percent. For teacher ratings the true positive rate is 70 percent with a false positive rate of 9 percent. See also Asperger’s disorder. REFERENCES Ehlers, F., & Gillberg, C. (1993). The epidemiology of Asperger syndrome: A total population study. Journal of Child Psychology and Psychiatry and Allied Disciplines, 34, 1327–1350. Ehlers, F., Gillberg, C., & Wing, L. (1999). A screening questionnaire for Asperger syndrome and other high functioning autism spectrum disorders in school age children. Journal of Autism and Developmental Disorders, 29, 129–142.
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ASSESSMENT
ASSESSMENT Assessment is the overall process of gathering information, evaluating students, and making decisions based on what is learned. Assessment may involve many components including gathering background information, direct observation, formal and informal evaluation measures, report writing, team problem solving, interpretation of testing, decision making, and ongoing monitoring of student progress. FURTHER INFORMATION McMillan, J. H. (2004). Educational research: Fundamentals for the consumer (4th ed.). Boston: Allyn & Bacon.
PAUL G. LACAVA ASSESSMENT OF BASIC LANGUAGE AND LEARNING SKILLS (ABLLS) The Assessment of Basic Language and Learning Skills (ABLLS; Partington & Sundberg, 1998) is an assessment tool, a curriculum, and a skills tracking system that can be used for students with language delays, autism, cognitive disabilities, and many other areas as well. The ABLLS is built around skills students use in everyday activities and by using task analyses for the different indicators. Applied behavior analysis is the theory around which the ABLLS is centered, incorporating verbal behavior strategies for teaching skills to students. The introductory set for the ABLLS contains two books: The ABLLS protocol is used for each student to score how students perform on the skill sets and The ABLLS Scoring Instructions and IEP Development Guide. Once completed, the protocol becomes a curriculum tool individualized for the student. There are four sections that make up the ABLLS protocol: (a) Basic Learner Skills, (b) Academic Skills, (c) Self-Help Skills, and (d) Motor Skills. Within each section skills are identified within 25 domain areas (e.g., visual performance, receptive language, motor imitation, play and leisure). The ABLLS is not designed to provide age norms or to compare students to their peers. Typically developing students completing kindergarten or first grade should know the majority of the areas covered. Parents, teachers, psychologists, and other team members can complete the ABLLS as long as they know the student. The Scoring and Instruction Guide has strategies for teams to use to develop Individualized Education Programs for students. REFERENCE Partington, J., & Sundberg, M. (1998). The assessment of basic learning and language skills. Pleasant Hill, CA: Behavior Analysts, Inc.
BROOKE YOUNG ASSISTIVE TECHNOLOGY Several legislative acts or amendments have defined assistive technology (AT), assistive technology device, and assistive technology service. These include (a) Technology Related Assistance for Individuals with Disabilities Act of 1988 (PL 100-407) (Tech Act), (b) Individuals with Disabilities Education Act of 1990, (c) Americans with Disabilities Act of 1990, (d) Tech Act Amendments of 1994, and (e) Individuals with Disabilities Education Act Reauthorization of 1997. 24
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First defined by the Technology Related Assistance for Individuals with Disabilities Act of 1988 (PL 100-407), AT means ‘‘any item, piece of equipment, or product system, whether acquired commercially, off the shelf, modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities.’’ AT can be anything that makes it easier for the student to participate in class, complete homework, get around, turn things on, and communicate with friends and more (Assistive Technology Training Online, n.d.). AT should also be a required consideration in vocational training and in the workplace to increase independence. The Individuals with Disabilities Education Act of 1990 confirmed that AT is to be considered as part of a related service under special education and began the need for specific assessments in the area of AT for identification and selection. The Americans with Disabilities Act of 1990 ensures access to buildings and employment; ADA ensures that employers could not and cannot discriminate due to disability, and that a reasonable accommodation must be made to allow for the individual to work. In addition ADA ensures that AT devices and services are included under this legislation to provide that reasonable accommodation. The Tech Act of 1994 offers further clarification to what AT can do specifically related to vocational supports, natural environments, and workplace supports. It follows up on the provisions of ADA and further supports AT considering the advances in technology. In the Reauthorization of IDEA 1997, AT is seen as a critical tool to provide further access to the general education classroom for all students. IDEA 1997 requires that AT must be considered as an option for all students that receive an IEP. These acts ensure that AT needs must be identified on an individual basis and considered along with the child’s other educational needs. Identification of AT needs must involve family members and a multidisciplinary team. Parents or IEP members can ask for additional evaluation or an independent evaluation to determine AT needs. When an evaluation is being conducted, the team should consider the following: fine-motor skills, communication, and alternatives to traditional learning approaches. Lack of availability of equipment or cost alone cannot be used as an excuse for denying an assistive technology service. If included in the IEP, assistive technology services and assistive technology devices must be provided at no cost to the family and, if so indicated, devices must be allowed to go home with the student. Parents always have the right to appeal if assistive technology services are denied. REFERENCES Americans with Disabilities Act, 42 U.S.C. §§ 12101-12213 (1990). Assistive Technology Training Online. (n.d.). Introduction to AT. Retrieved November 29, 2006, from http://atto.buffalo.edu/registered/ATBasics/Foundation/intro/index.php. Individuals with Disabilities Education Act Reauthorization of 1997 (Public Law 105-17). Technology Related Assistance to Individuals with Disabilities Act of 1988 (P.L. 103-218). Technology Related Assistance to Individuals with Disabilities Amendment Act of 1994 (P.L. 103-218).
FURTHER INFORMATION Assistive Technology Training Online: http://atto.buffalo.edu. Edyburn, D., Higgins, K., & Boone, R. (2006). The handbook of special education technology research and practice. Whitefish Bay, WI: Knowledge by Design, Inc.
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ASSISTIVE TECHNOLOGY DEVICE There are a wide variety of assistive technology devices ranging from low tech to high tech. Lowtech devices, which do not involve batteries or any type of electronics, may include: (a) visual support strategies—typically low cost, hand made, and easy to use such as dry erase boards, clipboards, 3-ring binders, manila file folders, and photos; (b) tools to aid in writing, such as pencils or pens with a special grip; and (c) communication boards—portable communication boards allow the nonverbal student the means to be able to express their wants and needs. Mid tech includes battery-operated devices or simple electronic devices requiring limited advancements in technology, such as a tape recorder, Language Master, overhead projector, timer, calculator, or simple voice output device. Hightech devices are complex technological support strategies—typically ‘‘high’’ cost equipment. Examples include video cameras, computers and adaptive hardware, and complex voice output devices. FURTHER INFORMATION Assistive Technology Training Online: http://atto.buffalo.edu.
TERRI COOPER SWANSON ASSISTIVE TECHNOLOGY SERVICE Any individual with an Individualized Education Program can receive assistive technology services. Assistive technology service means any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device. This may also include the evaluation of the needs of an individual with a disability, including a functional evaluation of the individual in the individual’s customary environment; purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by individuals with disabilities; selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices; coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; training or technical assistance for an individual with disabilities, or, where appropriate, the family of an individual with disabilities; and training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of individuals with disabilities. FURTHER INFORMATION Assistive Technology Training Online: http://atto.buffalo.edu.
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ATTENTION DEFICIT HYPERACTIVITY DISORDERS (ADHD)
ASSOCIATION METHOD The Association Method is a phonics-based, multisensory, and multilevel curriculum designed to teach oral and written communication to people with severe communication disorders (Kotler, 2004), including autism spectrum disorders. This method develops and systematically associates each of the specific skills that must be coordinated for the development of the ability to understand and use oral communication. Multisensory teaching includes the use of auditory, visual, tactile, and motor-kinesthetic cues for learning. Matched to the strengths and needs of each individual child, the curriculum progresses from sounds to syllables, to words of gradually increasing length, to basic sentences and questions, and then more advanced sentence structures. Ultimately, when sufficient language skills have been achieved, a transition is made to traditional textbook formats for instruction. REFERENCE Kotler, M. (2004). What is the association method? Retrieved October 17, 2006, from http:// www.apraxia-kids.org/faqs/responsefromJcotler.html.
JAN L. KLEIN ATTENTION DEFICIT HYPERACTIVITY DISORDERS (ADHD) Attention deficit hyperactivity disorders (ADHD) are developmental disorders that include attention deficit/hyperactivity disorder, conduct disorder, and oppositional defiant disorder. There have been some arguments that hyperactivity disorders are part of the autism spectrum. While attention difficulties are seen in many children with autism spectrum disorders, this does not indicate that these disorders in their own right are part of the autism spectrum. In fact, presentation of difficulties in ‘‘pure’’ ADHD, conduct disorder and oppositional defiant disorder, while overlapping with behaviors seen in autism spectrum disorders (ASD), often have very different underlying motivations and a different quality to them. Also, such behaviors when seen in children with ASD do not necessarily require an additional diagnosis. This is dependent on the degree to which difficulties and behaviors interfere with functioning over and above the ASD. However, research does indicate the prevalence of such difficulties among children diagnosed with ASD. Gillberg (2002, p. 48) reports that the majority of children meeting diagnostic criteria for Asperger syndrome also met criteria for ADHD. In a recent Swedish study, Tonge, Brereton, Gray, & Stewart (1999) found that children and adolescents with autism spectrum conditions presented with more psychopathology, and were more disruptive, more antisocial, and more anxious than their nonspectrum peers. CHARACTERISTICS OF ADHDS Hyperactivity disorders are characterized by substantial restlessness, impulsiveness, and inattentiveness (Goodman & Scott, 2005). The key issue is in the lack of control over levels of activity, rather than the activity itself. Behaviors include fiddling with objects or clothing, getting up and walking about when the child should be seated, fidgeting or squirming when seated, being easily distractible and having difficulty staying on task, or a tendency to switch activities frequently. Commonly associated features include aggressive, antisocial, or defiant behaviors such that classification with 27
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the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000) can often lead to a dual diagnosis of ADHD and conduct disorder or ADHD and oppositional defiant disorder in many children (Goodman & Scott, 2005). However, both hyperactivity disorders and ‘‘pure’’ conduct or oppositional disorders are characterized by impulsive behaviors, and by wandering in the classroom. Children with hyperactivity disorders often have difficulties with social relationships. They may be rejected by peers who find the impulsive behaviors and interruptions during class and other activities a nuisance. There may be inappropriate calling out or rude or cheeky comments to adults and authority figures. Other associated difficulties in some children with hyperactivity disorders include specific learning difficulties, soft neurological signs such as general clumsiness, and a history of developmental delay. Conduct disorder and oppositional defiant disorder are characterized by antisocial behavior, failure to control behavior in a socially acceptable way, aggression, and defiance. Criteria for conduct disorder according to the DSM-IV-TR (APA, 2000) is that the child has shown at least four of the following behaviors for at least 6 months: (a) often losing temper, (b) often arguing with adults, (c) often defying adult requests or rules, (d) often deliberately annoying others, (e) often shifting blame to others, (f) often touchy or easily annoyed, (g) often angry and resentful, and (h) often spiteful or vindictive. Criteria for oppositional defiant disorder according to the DSM-IV-TR (APA, 2000) is that there has been at least 12 months with at least three of the following behaviors: (a) often bullying, threatening, or intimidating; (b) often starting fights; (c) using serious weapons in fights; (d) being physically cruel to people; (e) being physically cruel to animals; (f) stealing with force; (g) forcing someone into sexual acts; (h) fire-setting to cause damage; (i) destroying other’s property; (j) breaking into cars or houses; (k) conning others; (l) stealing without force; (m) often going out at night without permission; (n) running away from home overnight at least twice; and (o) often truanting, with truanting beginning before age 13. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Gillberg, C. (2002). A guide to Asperger syndrome. Cambridge: Cambridge University Press. Goodman, R., & Scott, S. (2005). Child psychiatry (2nd ed.). Oxford: Blackwell Publishing. Tonge, B. J., Brereton, A. V., Gray, K. M., & Stewart, L. E. (1999). Behavioural and emotional disturbance in high-functioning autism and Asperger Syndrome. Autism: International Journal of Research and Practice, 3, 117–130.
FURTHER INFORMATION Rutter, M. (1998). Antisocial behaviour by young people. Cambridge: Cambridge University Press. Taylor, E. (1998). Clinical foundations of hyperactivity research. Behavioural Brain Research, 94, 11–24.
FIONA J. SCOTT ATTRIBUTION According to Frith (1991), the ability to represent mental states such as thoughts, feelings, or beliefs is impaired among individuals with autism. Such perspective-taking deficits are a basis for the quality of social behaviors most frequently observed for this 28
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population (Meyer & Minshew, 2002; Jolliffe & Baron-Cohen, 1999). It is also interesting to note that when parents are asked about their children’s performance in these areas, they consistently share significant concerns about their children’s skills. However, when the children are asked to rate themselves in the same areas, they show no significant concerns (Barnhill, Hagiwara, Myles, & Simpson, 2000). Further review of current research shows that individuals with Asperger syndrome have a heightened awareness for details coupled with deficits in organization of information, increasing the potential to severely affect problem solving and reasoning skills (Minshew, Goldstein and Siegel, 1997). Just from this sampling of research findings, it is not impossible to see how individuals with autism spectrum disorders (ASD) are challenged daily in many ways as they attempt to successfully interact in the social world around them. One area that holds promise for improving social function is that of attribution retraining. Attribution patterns can be defined as how individuals under differing circumstances assume causation of words or deeds. A substantial research effort in the early 1970s resulted in the Attributional Theory of Achievement Motivation pioneered by Weiner et al. (1971). Originally tested in the learning disabilities community to determine factors influencing academic achievement, researchers were looking to explain the link between the children’s causal ascriptions for achievement outcomes and their behavioral responses to academic success and failure. The results concluded that attributions are clearly related to motivation and affect performance (Weiner, 1986). Our ability to manipulate these attributional beliefs about the sources and causes of success and failure allows us to maintain some control over our own experiences and is directly related to our self-esteem and successful self-determination (Covington, 1985). It is reasonable to suggest that if a person does not correctly attribute someone else’s thoughts, words, or deeds on a regular basis that it may cause frequent misunderstandings during social interactions, and if left untreated could cause that person to become defensive or develop ‘‘hostile’’ attribution over time in an effort to avoid unpleasant interactions. These aggressive or hostile attribution patterns can be maladaptive when considering the potential for future behavior changes (Baumeister, 1989; Weiner, 1986) and lend itself to the development of clinical depression as proposed in the reformulated Learned Helplessness Theory (Metalsky, Abramson, Seligman, Semmel, & Peterson, 1982). So where is the connection between attribution and the world of autism? One study shows that a third of adolescents with Asperger syndrome have pessimistic, maladaptive attribution styles; Barnhill (2001) and Baron-Cohen have spent a considerable amount of time advancing research that individuals with autism spectrum disorders are universally affected by deficits in theory of mind, which is our ability as a person to assume the emotions or activities going on in another person’s head. Baron-Cohen refers to these activities as mentalizing and on numerous occasions has found that individuals with ASDs are not able to take on the perspective of others and accurately determine their thoughts or motivations. It is widely thought that people with autism do not enjoy what is referred to as the Shared Attention Mechanism. A key component of our theory of mind, it is the drive we should have toward establishing what is a shared interest between oneself and another person. It is a way to get on the same ‘‘wave length’’ with each other (Baron-Cohen, 1997, p. 66). Along with the 29
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previously mentioned deficits, if those with autism are not ‘‘hard wired’’ necessarily to have that ability or interest in establishing a common ground socially with others, it is easier to imagine that misunderstanding or perceiving social situations could occur regularly. To incorporate attribution retraining as the first of many steps to increase social fluidity, example diagrams illustrate the following three variables in attribution retraining as identified by Weiner (1986): 1. Is the issue internal or external in locus? Did it happen because of something about you or something else? 2. Is the issue stable or unstable? Is it something you think will always happen? 3. Is it controllable or uncontrollable? Can you do anything about it?
Here is a real life example: You are sitting in a restaurant and there is a screaming baby at the table next to you! The average individual with Asperger syndrome or PDD-NOS is likely to think that the screaming is internal to them because it hurts their ears, that it will NEVER stop and that they have no control over it, essentially coming up with a depressing or negative assessment of the situation. The solution using attribution retraining would go something like this: 1. The problem is outside of me. A baby near me is having trouble and crying. 2. The situation really isn’t stable. Sooner or later the baby will have to stop crying. 3. I do have some control over the situation in that I can ask to leave the room, use selfcalming strategies or maybe change the table in order to make it less offensive to me.
As you can see, this assessment is still an uncomfortable situation but much more positively assessed, leaving room for the possibility of resolution to everyone’s benefit without notions of purposeful or hurtful behaviors and emotionally charged responses. It is possible to use this methodology to improve the person’s attribution pattern so that they are more consistently able to assess their circumstances and then select an appropriate response. While attribution is not the entire process of social problem solving, it should be thought of as an integral part of the successful problem solving experience. REFERENCES Barnhill, G. (2001). Social attributions and depression in adolescents with Asperger syndrome. Focus on Autism and Other Disabilities, 16, 45–53. Barnhill, G., Hagiwara, T., Myles, B. S., & Simpson, R. L. (2000). Asperger syndrome: A study of the cognitive profiles of 37 children and adolescents. Focus on Autism and Other Developmental Disabilities, 15, 146–153. Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press. Baumeister, R. F. (1989). Masochism and the self. Hillsdale, NJ: Lawrence Earlbaum Associates. Covington, M. V. (1985). Anatomy of failure-induced anxiety: The role of cognitive mediators. In R. Schwarzer (Ed.), Self-related cognitions in anxiety and motivation. Hillsdale, NJ: Lawrence Erlbaum Associates. Frith, U. (1991). Autism and Asperger syndrome. Cambridge: Cambridge University Press. Jolliffe, T., & Baron-Cohen, S. (1999). The Strange Stories Test: A replication with highfunctioning adults with autism or Asperger syndrome. Journal of Autism and Developmental Disorders, 29, 395–406.
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AUDITORY INTEGRATION TRAINING Metalsky, G. I., Abramson, L. Y., Seligman, M. E., Semmel, A., & Peterson, C. (1982). Attributional styles and life events in the classroom: Vulnerability and invulnerability to depressive mood reactions. Journal of Personal and Social Psychology, 43, 612–617. Meyer, J., & Minshew, N. (2002). An update on neurocognitive profiles in Asperger syndrome and high-functioning autism. Focus on Autism and Other Disabilities, 17, 152–160. Minshew, N., Goldstein, G., & Siegel, D. J. (1997). Neuropsychological functioning in autism: Profile of a complex information processing disorder. Journal of the International Neuropsychological Society, 3, 303–316. Weiner, B. (1986). Attribution theory of motivation and emotion. New York: Springer-Verlag. Weiner, B., Frieze, I., Kukla, A., Reed, L., Rest, S., & Rosenbaum, R. M. (1971). Perceiving the causes of success and failure. New York: General Learning Press.
FURTHER INFORMATION Ozonoff, S., Rogers, S., & Pennington, B. (1991). Asperger syndrome: Evidence of an empirical difference from high functioning autism. Journal of Child Psychology and Psychiatry, 32, 1081– 1105. Szatmari, P. (1991). Asperger’s syndrome: Diagnosis, treatment and outcome. Psychiatric Clinics of North America, 14, 1, 81–92.
SHERRY MOYER ATYPICAL BEHAVIOR Atypical behavior refers to any behavior or combination of behaviors found to be extreme. Areas of atypical behaviors commonly presented by individuals with autism spectrum disorders include temperament, attention, attachment, social behavior, play, vocal and oral behavior, senses and movement, self-stimulation and self-injury, and neurobehavioral state. MELANIE D. HARMS AUDIOLOGIST The role of an audiologist is to evaluate an individual’s hearing to determine if there is a hearing loss. Once a hearing loss has been detected, the audiologist will make recommendations for services needed, which might include speech therapy, assistance from a medical professional, or an amplification device. KATHERINE E. COOK AUDITORY INTEGRATION TRAINING Auditory Integration Training (AIT) is an intervention designed to help those with auditory processing problems. Consisting of 10 hours of listening to electronically modified music on headphones, typically done in two half-hour sessions a day over 10–12 days, AIT is intended to decrease auditory sensitivities and slightly improve overall hearing. It is also thought to positively influence behavior, social interactions, attention, and communication. It is purported to aid individuals with a variety of disabilities including ADHD, ADD, central auditory processing disorder, autism, and dyslexia. It can be used for both children and adults, but it is not recommended to be given prior to age 5 as the ear is not fully developed until then. AIT was created by ear, nose, and throat physician Dr. Guy Berard in France in the 1960s, as he dealt with his own loss of hearing. Having studied briefly under 31
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Dr. Alfred Tomatis but unsatisfied with his approach, Dr. Berard’s idea was to develop a sort of physical therapy for the auditory system. Over 5 years, he built his first AIT device, then came to produce the AudioKinetron and the Earducator. There are now other AIT devices on the market as well. Dr. Berard administered AIT to over several thousand individuals before retiring and reports great success; however, he never carried out any research or took data. He published a book explaining AIT and the theory behind it titled Hearing Equals Behavior (originally published in French in 1982 as Audition egale comportement, translated and published in English in 1993). However, it was the book Sound of a Miracle by Annabel Stehli (1991) that brought public attention to this intervention. Stehli wrote about her daughter, Georgianna, diagnosed with autism, who was ‘‘cured’’ after receiving AIT from Dr. Berard. Before intervention is begun, a child is given an audiogram to determine the frequencies to which the child is hypersensitive, represented by auditory peaks in their performance on the test. Other tests may also be conducted to find the decibel level to be used as well as other measurements of hearing and auditory sensitivities. Based on these tests the child then listens to music through headphones, which is electronically processed in two possible ways (can be used separately or both simultaneously). One is through modulation, whereby using wide-band filters the AIT device randomly dampens different frequencies of the music as it plays. The dulling of one frequency may last from a fraction of a second to a few seconds. Although not always done, the music may also be modified through narrow-band filters. These filters dampen the frequencies to which the child is hypersensitive. However, this requires accurate audiometric measures that may be difficult to attain depending on the functioning level of the child. If there is any doubt of the accuracy of audiometric tests, it is better to not use the narrow-band filters rather than risk using the wrong ones. Audiograms are usually given again in the middle of treatment and finally 3 months after treatment has finished. The delay in giving the final exam is Berard’s observation that results often take up to 3 months to appear. Berard also reports that during, and for several weeks after the intervention, a client’s behavior may worsen. Although Berard himself never carried out any research regarding the efficacy of AIT, there have been over 20 studies conducted since the early 1990s. Nonetheless, there is still a great deal of controversy regarding this technique and its efficacy. Proponents and skeptics alike, including the American Speech-Hearing-Language Association (ASHA) and the American Academy of Audiology, emphasize that AIT is still in the investigative stages and should only be undertaken if this is clearly understood by the family or individual seeking therapy. Both sides of the debate find serious flaws in opposing studies and there is certainly a lack of studies that can stand up to rigorous scientific scrutiny. Frequent critiques arise because of the lack of sufficient numbers of participants, control groups, and adequate, objective assessments. Finally, much skepticism finds its justification in the lack of understanding of how and why AIT is effective. Some critics assert that explanations given by Berard are contrary to current accepted science in the field. While there are several proposed explanations for improvement as a result of AIT, there is no proof for any of them. It should be noted that the Food and Drug Administration (FDA) has not yet approved AIT devices for marketing. Therefore, by law no claim can be made as to the effectiveness and safety of AIT. Practice of AIT requires a special investigative 32
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device exemption (IDE) filed with the FDA, and charges should be nominal and not result in profit for the professional administering AIT. REFERENCES Berard, G. (1993). Hearing equals behavior. New Canaan, CT: Keats Publishing. Stehli, A. (1991). Sound of a miracle. New York: Doubleday Dell.
FURTHER INFORMATION American Speech-Language-Hearing Association. (2004). Auditory Integration Training. ASHA Supplement 24, in press. Retrieved June 27, 2005, from http://www.asha.org/NR/rdonlyres/ A0067509-9F38-458A-A065-1B9312ECF990/0/v1PSAIT.pdf. Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor integration in autism: A review of the evidence. Journal of Autism and Developmental Disorders, 30(5), 415–421. Edelson, S., Arin, D., Bauman, M., Lukas, S., Rudy, J., Sholar, M., & Rimland, B. (1999). Auditory integration training: A double-blind study of behavioral and electrophysiological effects in people with autism. Focus on Autism and Other Developmental Disabilities, 14(2), 73–81. Gravel, J. S. (1994). Auditory integration training: Placing the burden of proof. American Journal of Speech-Language Pathology: A Journal of Clinical Practice, 3(2), 25–29. Mudford, O., Cross, B., Breen, S., Cullen, C., Reeves, D., Gould, J., & Douglas, J. (2000). Auditory integration training for children with autism: No behavior benefits detected. American Journal on Mental Retardation, 105(2), 118–129. Rimland, B., & Edelson, S. (1994). Is theory better than chicken soup? American Journal of Speech-Language Pathology, 3(2), 38–40. Rimland, B., & Edelson, S. (1994). The effects of auditory integration training on autism. American Journal of Speech-Language Pathology, 3(2), 16–24. Tharpe, A. M. (1999). Auditory integration training: The magical mystery cure. Language, Speech & Hearing Services in Schools, 30(4), 378–383.
KATIE BASSITY AUGMENTATIVE AND ALTERNATIVE COMMUNICATION Augmentative and alternative communication (AAC) refers to an array of systems designed to compensate for oral or written communication impairments (American Speech-Language-Hearing Association [ASHA], 2005). The systems either supplement the existing communication modality or are the primary form of communication. The purpose of AAC is to enable individuals to express wants and needs, transfer information, support interpersonal closeness, and establish social etiquette (Light, 1988; Light, Parsons, & Drager, 2002) so that they can ‘‘efficiently and effectively engage in a variety of interactions and participate in activities of their choice’’ (Beukelman & Mirenda, 2005, p. 8). AAC systems include symbols, aids, techniques, and strategies (ASHA, 2004, 2005). Individuals with autism spectrum disorders demonstrate an array of communication difficulties including limited comprehension and use of language and the nonverbal aspects of interactions. Frequently these difficulties coincide with the emergence of behavioral difficulties, frustration, and/or withdrawal. The varied AAC options currently available allow for individualization in the selection and design of an AAC system for a child or an adult with autism spectrum disorders (ASD). A system can be developed to meet the needs of a child who is just beginning to understand cause-and-effect relationships and the turn-taking aspects of human communication. Systems can also change over time to address the communicative ability of individuals who are able to 33
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express wants and needs as well as construct unique utterances specific to educational, vocational, or leisure contexts. Therefore, AAC systems for individuals with ASD address behavioral, language, social, learning, and literacy needs. Interdisciplinary team assessment and intervention practices guide professionals and families in identifying, developing, and utilizing AAC systems. Teams should monitor progress and modify the system based on therapeutic evidence in order to address the changing needs of the individual. SYMBOLS Many AAC systems use symbols that represent ideas, events, or objects. The level of abstraction, or representation, varies across symbols. Symbols can be concrete, or transparent, clearly representing an idea, event, or object. These types of symbols include natural gestures and signs, life-size or miniature objects, graphic representations such as photos, or color pictures, as well as some line drawings and Rebus symbols (Beukelman & Mirenda, 2005). Other symbols are abstract, or opaque, where the referent or relationship between the symbol and the event is not immediately apparent. These types of symbols include words, some gestures, iconic line drawings, and Rebus symbols, as well as more abstract and complex iconic systems such as Blisssymbols (Silverman, 1995). Some commercially available symbol programs include Boardmaker (Mayer Johnson LLC, 2004) and DynaSyms (Poppin & Company, 2005). The comprehension and use of symbols is integral and essential to language development and thus successful use of an AAC system. Given that people with ASD possess difficulties with symbolic thought or language (APA, 2000), it is important to consider the available array of concrete objects and oral, gestural, and graphic symbols so that representation of ideas within the system best matches the individual’s ability. In the process of developing and implementing an AAC system, symbol comprehension and use is taught and enhanced. Consequently, the level of representation can change over time from concrete objects to iconic symbols or gestures as the individual’s symbolic thought or language ability grows. Systems can integrate multiple sensory components where an object or graphic symbol is paired with texture and/or an auditory dimension. Doing so can support comprehension and learning and result in increased meaningful use of the system. For example, a young child with minimal language skills may use a miniature bus affixed to a voice output device that sings ‘‘the Wheels on the Bus’’ when depressed. The concrete object paired with the verbal cue provides the child with comprehension support. Over time and with consistent presentation, the child is more likely to spontaneously use the device to signal ‘‘time for the bus.’’ AIDS AAC systems also include a variety of aids or devices referred to as low (unaided), medium, or high (aided) technology, depending upon the level of computer technology involved. Low-technology, electronically unaided systems include natural forms of communication such as functional gestures, sign language, and facial expressions. Medium-technology aids consist of physical and graphic symbols in the absence of electronic technology. Objects or photographs, color or black and white line drawings, iconic representations, alphabet boards, or words organized on concrete displays such as poster boards, wallets, flip charts, vests, or within binders are all medium-technology aids (Beukelman & Mirenda, 2005). 34
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Finally, high-technology devices utilize electronic and/or computer technology and voice output. Speech-generating devices (SGD) produce speech via synthesized (electronic) or digital (recorded) productions paired with some type of symbol represented on either a fixed, dynamic, or hybrid visual display. Fixed displays include overlays where symbols occupy a fixed location. Dynamic display devices use LCD screens that allow the symbols to be manipulated using various functions on the device. Hybrid systems incorporate both fixed and dynamic symbol displays. Results of research on the effect of SGDs on the behavioral, linguistic, and social functioning of children with ASD have been positive (Beukelman & Mirenda, 2005). Some contemporary high-technology SGDs include Tech Speak (Liberator Co., 2005), Chat PC (Saltillo, 2005), Macaw (ZYGO Industries, 2005), Dynamo (DynaVox Technologies, 2005), and ChatBox (Prentke Romich Co., 2005). TECHNIQUES The technique used to activate symbols on medium- and high-technology systems varies across devices. Symbol selection depends upon the individual’s visual, auditory, and motor skills. Direct selection options include physical pressure, touch, or removal of symbols; use of eye gaze or index finger to point to the symbol; as well as speech recognition systems (Beukelman & Mirenda, 2005). Various activation options include timed activation, release activation, visual or auditory scanning, and enlarged pictures. Timed and release activation options can be adjusted to assist individuals who tap repeatedly or those with low muscle tone that results in difficulty depressing symbols (Beukelman & Mirenda, 2005). Visual scanning uses a light to highlight symbol options and auditory scanning uses a tone; these systems can also be combined. Finally, tactile options such as raised grids to separate symbols can support successful activation of desired symbols. STRATEGIES The strategy with which specific symbols are stored affects the timing of the communicative act, formulation of ideas, and the rate of communication (Beukelman & Mirenda, 2005). Strategy refers to the amount of information or number of messages an SGD can hold, which ranges from a single message (single-hit device) to hundreds of messages arranged according to topics. Messages can be arranged by levels, or overlays, similar to computer files and stored within the device’s electronic system. Complete messages can be stored individually within one symbol. Symbols representing single- or multiple-word messages may be sequenced together or ‘‘chained’’ in order to formulate more novel ideas, and some SGDs integrate a spelling keyboard function. Many devices allow flexibility in moving from single-hit productions of complete utterances to chaining of ideas and spelling options. SELECTION OF AAC DEVICE AAC must address the individual’s changing needs. Light (1989) provides a framework that includes analysis of the individual’s linguistic, operational, social, and strategic competence. Linguistic competence involves identifying the individual’s ability to understand and use symbol systems. Some AAC experts (Beukelman & Mirenda, 2005; Cress, 2002; Harwood, Warran, & Yoder, 2002; Light et al., 2002) discuss 35
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linguistic competence by separating the beginning communicator who does not understand or use symbols and the beginning communicator with emerging symbolic understanding from the communicator with more advanced academic needs. Given the severity and range of language impairments found among individuals with ASD, this distinction is important. Individuals who are beginning communicators with minimal symbolic understanding require support to develop foundational communication skills including cause-effect and object permanence awareness, imitation, joint attention, and use of a natural gestural system. Successful communication development at this stage requires that the communicative partner learn facilitative strategies such as optimizing responsiveness, focusing on what the child is attending to, recognizing and interpreting communicative attempts, creating predictable routines, and modeling language using simplified utterances, commenting, expansions, and elaborations (Siegle & Cress, 2002). At this stage, low- and medium-technology AAC is initially beneficial (Beukelman & Mirenda, 2005). As children develop into beginning communicators with emerging symbolic skills, medium-technology AAC may be beneficial. These children are ready to use object and graphic symbols to make choices and requests, gain attention, protest or reject, and self-select symbols (Beukelman & Mirenda, 2005). At this point, social and strategic competence as defined by Light (1989) emerges and can be therapeutically addressed. That is, children are ready to learn how to initiate, maintain, develop, repair, and end conversations using the AAC device. Turn-taking ability and use of the device to ask questions, comment, answer, and acknowledge emerges along with communication breakdown coping strategies (Light, 1989). As mentioned earlier, careful selection of symbols, messages, and aids that support social and strategic competence is critical for individuals with ASD. Since adaptive social functioning is essential to programming for children with ASD, consideration of the behaviors a child with ASD uses to protest and gain attention is important. AAC systems can assist individuals with ASD in developing adaptive protesting behaviors using messages such as ‘‘I want to be alone’’; ‘‘don’t touch me’’; ‘‘it is too loud in here’’; ‘‘no thanks’’; or ‘‘not yet.’’ Additionally, the inherent human behavior of gaining attention can be addressed. Indeed, research has shown that integrating AAC with Functional Communication Training (FCT) is effective in reducing maladaptive, while increasing adaptive, attention gaining behaviors (Durand, 1993, 1999; Mirenda, 1997). Operational competence considerations balance the demands of the individual’s developmental and chronological ages in order to support functional and meaningful interactions. Systems must be adaptable to account for anticipated growth but be useable in the present. Portability and durability of the device are critical considerations affecting access across communicative contexts. Increased access translates to increased opportunity for use, which promotes increased skill, and is therefore an essential programming component. Additionally, the cultural background, age, and gender of the individual must be considered. For example, the wording of messages and the voice used to transmit the message on the SGD must match that of the individual using the system and his/her social network (Beukelman & Mirenda, 2005). 36
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TRANSDISCIPLINARY TEAM Assessment and intervention requires a transdisciplinary approach. Beukelman and Mirenda (2005) propose use of the Participation Model, which considers intrinsic and extrinsic variables influencing AAC use. With this model, individual independence, personal characteristics, and opportunities of use are cohesively addressed. Individual independence involves analysis of the level of support and prompts needed for successful utilization of the AAC system. Addressing personal characteristics involves formal and informal analysis and treatment of the individual’s cognitive, language, social, hearing, vision, behavioral, motor, and literacy abilities. The team must also consider and plan for extrinsic strengths and challenges. For example, studies (Angelo, Jones, & Kokoska, 1995; Angelo, Kokoska, & Jones, 1996) examining parental concerns have identified that parents of children who use AAC worry about acquiring additional knowledge of and training in the use, maintenance, and programming of AAC devices along with the ability to plan for the future and integrate the device across settings. Community awareness and support, funding, parent and professional training and accessibility to devices are other concerns expressed by parents (Angelo, Jones, et al., 1995; Angelo, Kokoska, et al., 1996). Assessment tools such as the Wisconsin Assistive Technology Initiative Assistive Technology Assessment (WATI, 2004) and the Augmentative Communicative Assessment Profile (Goldman, 2002) allow for analysis of intrinsic and extrinsic variables when considering high- and low-technology systems for children. AAC METHODS FOR INDIVIDUALS WITH ASD Various AAC methods have been discussed in the literature specifically for use with individuals with ASD. One method, Facilitated Communication (FC), involves the use of a second person who manually supports or facilitates the use of the AAC system with the person with ASD (Biklen, 1990). Controversy surrounding this method has focused on the authenticity of the messages produced. Given the research, numerous professional organizations, including ASHA, have issued position statements indicating that FC should be viewed as an experimental method. Another method used with children with ASD is the Picture Exchange Communication System (PECS; Frost & Bondy, 2002). This method utilizes prescribed applied behavioral analysis (ABA), whereby very systematic verbal productions are paired with the use of tangible symbols. PECS requires use of a supportive third person, or assistant, who prompts the individual to physically remove a symbol and give it to the communicative partner, or facilitator. Thus, sharing communication with a partner is emphasized. Over time, the level of prompts and reliance on the assistant is faded, and use of symbols for a variety of social-communicative purposes is expanded. AAC systems, or assistive technology, also support more advanced academic and communicative needs, specifically access to written communication and literacy support. For example, assistive technology devices, like label makers, allow the individual to type out short answers and affix them to worksheets. Word processors are considered assistive technology when used to compensate for fine-motor difficulties. Touch screens provide access to computer technology and are an effective tool in supporting teaching of concepts, literacy development, and computer access. Finally, 37
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speech-recognition word processing systems are also available and may prove to be an effective tool for some individuals with ASD. AAC systems used to organize time and create predictability include various schedule boards, which are different and separate from systems used for oral communication. Schedule boards can integrate objects, pictures, or print (Quill, 1989). Some higher functioning individuals with ASD can benefit from using high technology, computerized scheduling systems such as a Palm Pilots or Blackberries. Schedule systems used to represent part of or an entire day are referred to as macroschedules. Schedules can also represent steps needed to complete a particular task, such as hand washing, and are referred to as microschedules (Quill, 1989). Varied AAC systems are available to enhance the social, communicative, linguistic, behavioral, academic, and vocational lives of individuals with ASD. An interdisciplinary team approach is necessary to assist in identifying the AAC system best suited to meet an individual’s current needs. Initially, an assessment of the individual’s cognitive, motor, language, and social skills is essential to identifying a system that matches his/her current ability. Additionally, planning must consider strategies that will support the individual’s further growth as a communicator and learner. AAC systems are not static and should be modified as the individual grows and gains skills. Successful and consistent integration of AAC systems across the multiple environments a person encounters can elicit and support adaptive functioning and consequently learning and socialization. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. American Speech-Language-Hearing Association. (2004). Roles and responsibilities of speechlanguage pathologists with respect to augmentative and alternative communication: Technical report. ASHA Supplement, 24, 1–17. American Speech-Language-Hearing Association. (2005). Roles and responsibilities of speech-language pathologist with respect to alternative communication: Position statement. Retrieved June 1, 2006, from http://www.asha.org. Angelo, D., Jones, S., & Kokoska, S. (1995). Family perspective on augmentative and alternative communication: Families of young children. Augmentative and Alternative Communication, 11, 193–201. Angelo, D., Kokoska, S., & Jones, S. (1996). Family perspective on augmentative and alternative communication: Families of adolescents and young adult. Augmentative and Alternative Communication, 12, 13–22. Beukelman, D. R., & Mirenda, P. (2005). Augmentative and alternative communication: Supporting children and adults with complex communication needs (3rd ed.). Baltimore: Brookes Publishing Co. Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291–314. Cress, C. J. (2002). Expanding children’s early augmented behaviors to support symbolic development. In J. Reichle, D. R. Beukelman, & J. C. Light (Eds.), Exemplary practice for beginning communicators: Implications for AAC (pp. 219–272). Baltimore: Brookes Publishing Co. Durand, V. M. (1993). Functional communication training using assistive devices: Effects on challenging behavior. Augmentative and Alternative Communication, 9, 168–176. Durand, V. M. (1999). Functional communication training using assistive devices: Recruiting natural communities of reinforcement. Journal of Applied Behavior Analysis, 32, 247–267. DynaVox Technologies. (2005). Dynamo. Pittsburgh, PA: Author. Frost, L., & Bondy, A. (2002). Picture exchange communication system training manual (2nd ed.). Newark, DE: Pyramid Education Products.
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AUTISM BEHAVIOR CHECKLIST (ABC) Goldman, H. (2002). Augmentative Communication Assessment Profile. London: Speechmark Publishing. Harwood, K., Warren, S., & Yoder, P. (2002). The importance of responsivity in developing contingent exchanges with beginning communicators. In J. Reichle, D. R. Beukelman, & J. C. Light (Eds.), Exemplary practice for beginning communicators: Implications for AAC (pp. 59–96). Baltimore: Brookes Publishing Co. Liberator Company. (2005). Tech Speak. London: UK: Author. Light, J. (1988). Interaction involving individuals using augmentative and alternative communication systems: State of the art and future directions. Augmentative and Alternative Communication, 4, 66–78. Light, J. (1989). Toward a definition of communicative competence for individuals using augmentative and alternative communication systems. Augmentative and Alternative Communication, 5, 137–144. Light, J. C., Parsons, A. R., & Drager, K. (2002). ‘‘There’s more to life than cookies’’: Developing interactions for social closeness with beginning communicators who use AAC. In J. Reichle, D. R., Beukelman, & J. C. Light (Eds.), Exemplary practice for beginning communicators: Implications for AAC (pp. 187–218). Baltimore: Brookes Publishing Co. Mayer Johnson LLC. (2004). Boardmaker. Solana Beach, CA: Author. Mirenda, P. (1997). Supporting individuals with challenging behavior through functional communication training and AAD: Research review: Augmentative and Alternative Communication, 13(4), 207–225. Poppin & Company. (2005). DynaSyms, Unity, ME: Author. Prentke Romich Company. (2005). ChatBox. Wooster, OH: Author. Quill, K. (1989). Educating children with autism. Albany, NY: Delmar. Saltillo. (2005). Chat PC. Millersburg, OH: Author. Siegle, E. B., & Cress, C. J. (2002). Overview of the emergence of early AAC behaviors: Progression from communicative to symbolic skills. In J. Reichle, D. R. Beukelman, & J. C. Light (Eds.), Exemplary practice for beginning communicators: Implications for AAC (pp. 25–57). Baltimore: Brookes Publishing Co. Silverman, F. (1995). Communication for the speechless (3rd ed.). Needham Heights, MA: Allyn & Bacon. Wisconsin Assistive Technology Initiative. (2004). W.A.T.I. Assistive Technology Assessment. Retrieved June 1, 2006, from http://www.wati.org. Zygo Industries. (2005). MacCaw, Portland, OR: Author.
LISA R. AUDET AUTISM. See Autistic Disorder AUTISM BEHAVIOR CHECKLIST (ABC) The Autism Behavior Checklist (ABC; Krug, Arick, & Almond, 1993) is an independent autism screening tool of 57 items completed by parents. The assessment relies on direct observation of the student and historical information provided by parents and other people knowledgeable about the student. This tool is designed to assist in the diagnosis of autism rather than provide programming information about treatment. The ABC is a subtest of the Autism Screening Instrument for Educational Planning (ASIEP-2). REFERENCE King, D. A., Arick, J. R. & Almond, P. J. (1993). Autism screening instrument for educational planning. Austin, TX: Pro-Ed.
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AUTISM DIAGNOSTIC INTERVIEW–REVISED (ADI-R)
AUTISM DIAGNOSTIC INTERVIEW–REVISED (ADI-R) The Autism Diagnostic Interview–Revised (ADI-R; Lord, Rutter, & LeCouteur, 1994; Rutter, LeCouteur, & Lord, 2003) is a detailed parental history interview designed to identify individuals with autism. The interview covers early developmental history and current and early behavior presentation in each of the triad areas of the autism spectrum, and includes algorithms that allow the assessor to categorize presentation of autism features as measured against DSM-IV-TR and ICD-10 requirements, as well as provides extra non-algorithm information to enable appropriate diagnostic subtypes on the spectrum to be identified, and severity of presentation of symptoms. The ADI-R has been shown to be good at distinguishing autism from non-autism in clinical populations, but it does not in itself differentiate between core autism and the broader autism spectrum presentations. It was designed to be used in conjunction with the Autism Diagnostic Observation Schedule, with research indicating a positive result on both instruments is 99 percent accurate for diagnosis of autism. Both instruments require training before use. REFERENCES Lord, C., Rutter, M., & LeCouteur, A. (1994). Autism Diagnostic Interview–Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659–685. Rutter, M., LeCouteur, A., & Lord, C. (2003). ADI-R Autism Diagnostic Interview–Revised. Los Angeles: Western Psychological Services.
FIONA J. SCOTT AUTISM DIAGNOSTIC OBSERVATION SCHEDULE (ADOS) The Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000; Lord, Rutter, DiLavore, & Risi, 2002) is designed to measure presentation of behavioral response and communicative attempt as compared to the triad features of autism. It has four modules depending on the child’s level of communicative functioning, covering (a) preverbal/single words, (b) phrase speech, (c) fluent speech child, and (d) fluent speech adolescent/adult. It enables the examiner or clinician to record the range of various presentations of the core triad features of autism spectrum disorders—namely impairments in social interaction, impairments in communication, and presentation of repetitive and stereotyped behaviors coupled with poor imagination or symbolic play skills. Like the Autism Diagnostic Interview–Revised (ADI-R), the ADOS uses algorithms to classify individuals, but unlike the ADI-R it covers both autism and autism spectrum. The ADOS was designed for use alongside the ADI-R, and combined use offers 99 percent accuracy in classifying autism. The ADOS requires training prior to use. REFERENCES Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., DiLavore, P. C., et al. (2000). Autism Diagnostic Observation Schedule: Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism & Developmental Disorders, 30(3), 205–223. Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (2002). The Autism Diagnostic Observation Schedule: Generic. Los Angeles: Western Psychological Services.
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AUTISM SCREENING INSTRUMENT FOR EDUCATIONAL PLANNING–SECOND EDITION Autism Screening Instrument for Educational Planning–Second Edition (ASIEP-2; Krug, Arick, & Almond, 1996) is an individually administered instrument designed to help professionals evaluate autistic individuals (18 months of age through adulthood) and develop appropriate instructional plans in accordance with the Individual with Disabilities Education Act (PL 94–142). It can also be used for differential diagnosis, as it distinguishes individuals with autism from those with other severe handicaps. The scale looks at five aspects of behavior, which together provide a clear picture of the individual’s functional abilities and instructional needs. The ASIEP is composed of five subtests: Autism Behavior Checklist (sensory, relating, body concept, language, and social self-help behaviors); a sample of vocal behavior (spontaneous verbal behavior); interaction assessment (social interaction based on observable behaviors); educational assessment (language performance and communicative abilities through signed or verbal responses); and prognosis of learning rate. Each subtest employs a different format, and each is individually normed. The entire test can be administered by a professional with experience with children with autism in 11=2 to 2 hours. It yields percentiles and summary scores for each subtest. REFERENCE Krug, D., Arick, J., & Almond, P. (1996). Autism screening instrument for educational planning. Los Angeles: Western Psychological Services.
JEANNE HOLVERSTOTT AUTISM SCREENING QUESTIONNAIRE. See Social Communication Questionnaire AUTISTIC DISORDER Autistic disorder, or autism, is currently understood as a developmental disability that begins before the age of three. Autism’s three main areas of impact are in the domains of social interaction, communication, and restricted, repetitive, and stereotyped interests and behaviors. The psychiatric handbook of mental disorders, the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR: APA, 2000), classifies autism as a pervasive developmental disorder (PDD). This PDD term refers to a group of disabilities with similar core characteristics and a wide range of manifestation and prognosis. The other four diagnostic PDD labels include Asperger syndrome (AS), Childhood Disintegrative Disorder (also known as Heller’s syndrome), Rett’s Disorder (also known as Rett syndrome), and Pervasive Developmental Disorder– Not Otherwise Specified (PDD-NOS, also known as atypical autism). Autism has been known by several other names over the past decades including: early infantile autism, childhood autism, Kanner’s autism, and classical autism. Individuals with autism present on a continuum of expression with cognition across all IQ levels and possession of individual strengths and needs. Some with autism have no language, have significant cognitive impairment, and are in need of constant care. Others have limited language and mild cognitive impairments, but are in need of significant support. Still others have average to above-average intelligence and their 41
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difficulties are less noticeable. Common strengths in autism include visual/spatial abilities, systemizing skills, proclivity for routine-oriented behaviors, rote learning, and physical development. Some with autism have splinter skills, or unique talents and abilities that seem unusual when compared to adaptive or other functioning levels. For example, an 8-year-old child with autism may not be toilet trained but be able to do puzzles at amazing speed. Or an adult with autism may be nonverbal but be able to play a musical instrument with expertise. Generally, those with autism have challenges with verbal and nonverbal communication, relating to others, difficulty learning by traditional methods, are resistant to change, and insist on familiarity. Other concerns include possible co-occurring medical conditions, sensory processing difficulties, and behavioral deficits and/or excesses. Approximately one-third of those with autism experience seizures at some point. Some individuals with autism exhibit odd repetitive behaviors such as hand flapping, finger twisting, light filtering, body posturing, or complex movements of the body. It has been inferred that these behaviors are due to a need to respond to sensory input or as a means to deal with stress, anxiety, or confusion. Others with autism may have selfinjurious or aggressive behaviors. These behaviors are often the result of inappropriate teaching, lack of positive supports, and the difficulties facing a person who may have limited communication and/or means to have needs met. Today, many use the term autism to refer to an autism spectrum disorder (ASD) or the clustering of three of the most common PDDs (autism, AS, and PDD-NOS). The distinctions between these labels can be subtle, but generally those with PDD-NOS meet at least one of the criteria of autism but lack other criteria to qualify for the autism diagnosis. For example, a child with PDD-NOS might have average IQ, good social skills, but significant and pervasive communication issues. Those with AS have average to above-average cognition and speech development that is typical, but have social and behavioral impairments. For example, an adult with AS might have a high IQ, hold a job in a computer company, be married, but have intense social needs and anxieties as well as some repetitive and stereotyped behaviors. Autism tends to be the most challenging of the group, with many having cognitive impairment (IQ less than 70), less or no verbal language ability, and more medical, sensory, and behavioral needs. For example, a teenager with autism might have cognitive impairment and limited adaptive skills, no language ability, use limited sign language to communicate, have epilepsy, and self-injurious behaviors. The previous examples are merely attempts at detailing the wide range of presentations for similar disabilities. Although each individual with autism has impairments in the three main areas (social, communication, and behaviors), each is unique in how the impairments and strengths are expressed, in personality and in potential. Today, many professionals use the terms PDD and ASD interchangeably. Another ongoing debate in the field is whether or not AS is a distinct disability or just a form of high-functioning autism (HFA). The term HFA has been used to describe those with autism who are less impaired compared to those with severe cognitive impairment, individuals with autism who have an IQ above 70, or those with average or even superior IQ. Since AS was added to the Diagnostic and Statistical Manual of Mental Disorders in 1994 (APA), there has been debate about whether AS and HFA are the same or different diagnoses. 42
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Although autism has been one of the most studied disabilities of childhood, it remains one of the most perplexing. What causes autism is still beyond the understanding of scientists, although they are much closer today than when autism was first described in the literature by Leo Kanner in 1943. Autism has been conceptualized in a number of ways over the past 60 years. From the mid-1940s into the 1960s, autism was thought to be a psychogenic condition of childhood caused by parents’ inability to bond with their children, and the negative term ‘‘refrigerator parent’’ (often the mother was implicated) was used to label the parents of children with autism. Although Kanner and others first posited that autism was a condition that was present at birth or developed soon after, professionals missed some telltale signs (such as if parents could not bond with their child with autism, why did they have other children who developed without having autism?), and chose rather to blame the parent. From the 1960s onward, evidence was presented that began to overturn this unfortunate beginning. This evidence came in the form of family and twin studies, brain research, and other designs that described autism as a biological disorder that had genetic roots. Even though most today agree that autism is a spectrum of disorders that range from mild to severe presentations, there is still debate on how autism develops. Some believe that autism is predetermined genetically and that the impact of the disability will depend on the number of genes affected in any one individual. Others believe that autism is caused by environmental factors that combine with affected genes to cause the disability. Still others believe that autism is caused when various environmental toxins get into a child’s body, and the immune system is unable to process these materials. What most agree on is that the behavior, learning, and characteristics of individuals with autism are different from typically developing individuals because the biology of the brain is different due to genetic and/or environmental influences. Although biological in nature, there is currently no medical test for autism and it is diagnosed only after observations of the child and interviews with caregivers. Autism was once thought an extremely rare condition of childhood. Initial prevalence statistics estimated that 4 to 5 out of 10,000 children had autism. Currently, autism is one of the most diagnosed disabilities of childhood with a prevalence rate of approximately 2 to 6 per 1,000. How and why the prevalence rate is changing are controversial questions; some blame the environment and others conclude that the broadening of the autism spectrum accounts for the increase. Today the total autism population in the United States has been estimated at approximately 1.5 million children, youth, and adults (Autism Society of America, 2006). Both historically and currently autism is much more common in males than females (4 to 1 for autism, as high as 9 to 1 for AS). In the middle of the 1900s, psychotherapy and/or removal of the child with autism from the home were seen as possible treatments. Since that time, applied behavior analysis (ABA), special education, cognitive behavior modification, visual/environmental supports, structured teaching, positive behavior support, speech-language therapy, occupational therapy, physical therapy, counseling, and social skills training have all become avenues to teach individuals with autism. Historically, many individuals with autism were placed in institutions. Since the inclusion and deinstitutionalization movements and passage of national laws, most individuals with autism now live at home and go to public schools. However, some children are home-schooled or 43
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attend special schools, and many families augment public school education by providing their children with private services at home. The future for individuals with autism remains variable depending on education, supports, availability of services, early intervention, degree of strengths and impairments, and other factors. Although considered a lifelong disability, many with autism have made significant progress and contributions. For example, Temple Grandin, Professor of Animal Sciences at Colorado State University, is one of the most well known adults with autism in the United States. Grandin has become an expert in livestock handling and is well known internationally for her expertise in this area as well as being a speaker and advocate for those with autism. Since the controversy over the increased diagnosing of autism and related disorders in the 1990s to today, autism has become better known to the public. Television shows, magazine articles, newspaper stories, motion pictures, documentaries, and so forth have all helped to spread awareness about autism and its impact on individuals, families, educators, other professionals, and communities. For example, many people have seen or heard of the award-winning motion picture Rain Man, which was produced in 1988, a portrayal of an adult with autism and his brother as they journeyed across the country. One of the biggest and later controversies in autism pertains to the question of potential cures for this disability. Some believe that those with autism can and should be cured. This remains highly controversial, and the ethical question of whether or not autism should be cured has been asked. Others, both those with autism and their advocates, have spoken out against curing autism. They believe that autism is a culture and that curing autism would be eradicating these persons and their way of life. They aren’t arguing against helping and teaching persons with autism, however they argue that curing autism would take away the uniqueness and future contributions of those with autism. In the early twenty-first century, the autism research community was focusing on a number of areas including, genetics, brain research, treatment and education, possible environmental contributors, and how autism develops. It is very possible that in the next 50 years the specific genes responsible for autism will be located and that therapies will be created to address these chromosomal differences both in utero and postnatally. Furthermore, continued advances in the field of brain studies may also bring about treatments to change neurology. Environmental factors may also be identified as contributors to autism with appropriate responses following. Other new or existing methodologies will be identified as best practice for teaching those with autism. If an eventual cure for autism is discovered, the ethical question of whether or not autism should be cured will continue to be debated. Included within this discussion will be the moral imperative to treat those with this disability with dignity and respect. See also self-injurious behavior; speech therapy; visual supports. REFERENCES American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Autism Society of America [ASA]. (2006). What is autism? [Brochure]. Bethesda, MD: Author.
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FURTHER INFORMATION Frith, U. (Ed.). (1989). Autism: Explaining the enigma. Oxford: Blackwell. Gillberg, C., & Coleman, M. (2000). The biology of the autistic syndromes (3rd ed.). London: Keith Mac Press. Grandin, T. (1995). Thinking in pictures and other reports from my life with autism. New York: Vintage Books. Herbert, M. R. (2005). Autism: A brain disorder, or a disorder that affects the brain [Electronic Version]. Clinical Neuropsychiatry, 2, 354–379. Johnson, M. (producer), & Levinson, B. (director). (1988). Rain Man [Motion Picture]. United States: United Artists. Kanner, L. (1943). Autistic disturbances of affective content. The Nervous Child, 2, 217–250. National Research Council. (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. Powers, M. D. (2000). Children with autism (2nd ed.). Rockville, MD: Woodbine House. Quill, K. A. (2000). Do watch listen say: Social communication intervention for children with autism. Baltimore: Brookes Publishing Co.
PAUL G. LACAVA
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B BASELINE ‘‘Baseline conditions serve as the background or context for viewing the effects of a second type of condition’’ (Johnston & Pennypacker, 1993, p. 225). Kennedy (2005) further explained, ‘‘The starting point for most experimental analyses of behavior is the establishment of a baseline’’ (p. 35). In other words, baseline refers to the occurrence of a response in its freely occurring or natural state. It is the observations of a dependent variable response prior to the administration of a treatment condition, which may or may not change this response. It is the measure against the result of the treatment to see whether the dependent variable changes or not. The recording of a baseline is very important because the baseline data serves as the standard against which change elicited by the experimental treatment is assessed. REFERENCES Johnston, J. M., & Pennypacker, H. S. (1993). Strategies and tactics of behavioral research (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates. Kennedy, C. H. (2005). Single-case designs for educational research. Boston: Pearson Education, Inc.
KAI-CHIEN TIEN BEHAVIOR Behavior is the observable manifestation of internal functioning. This means that behavior is a form of communication and can be a reaction to either an external or internal situation. For example, self-stimulatory behavior is widely considered to serve the function of stimulating the individual’s mind and senses, as well as serving a selfregulating function. These behaviors would be a response to internal conditions. On the other hand, if a room is noisy and the child covers his ears, he is reacting to the external situation. It is important to remember that all behavior, including undesired or inappropriate behavior, is a form of communication. Any intervention for a targeted behavior will be unsuccessful if it does not address what the individual intended the behavior to communicate. KATIE BASSITY
BEHAVIORAL ASSESSMENT OF THE DYSEXECUTIVE SYNDROME (BADS)
BEHAVIORAL ASSESSMENT OF THE DYSEXECUTIVE SYNDROME (BADS) The Behavioral Assessment of the Dysexecutive Syndrome Battery (BADS; Wilson, Alderman, Burgess, Emslie, & Evans, 1996) is designed to assess adolescents and adults with dysexecutive syndrome (DES). DES includes disorders of planning, organization, problem solving, and attention, closely resembling what was once called ‘‘frontal lobe syndrome.’’ The BADS includes items that are specifically sensitive to frontal lobe damage and to those skills involved in problem solving, planning, and organizing behavior over an extended period of time. It assesses capacities for everyday living that reflect the real-life demands that occur when people need to solve problems, set priorities in the face of competing demands, and adapt behavior to changing situations. The BADS helps determine whether an individual has a general impairment of executive functioning or a specific kind of executive disorder. REFERENCE Wilson, B. A., Alderman, N., Burgess, P. W., Emslie, H., & Evans, J. J. (1996). Behavioural assessment of the dysexecutive syndrome. Bury St. Edmunds, UK: Thames Valley Test Company.
JEANNE HOLVERSTOTT BEHAVIORAL OBJECTIVE A behavioral objective is a definition of a desired behavior toward which a child is working. It should be observable and measurable, such that anyone reading it would be able to clearly identify the behavior being addressed, as well as assess if the objective has been met. Therefore, a behavioral objective must also include criteria that define what it means to accomplish or meet the objective. Behavioral objectives should also be stated in positive terms and should be socially valid, helping an individual reach maximum independence and integration. KATIE BASSITY BEHAVIORAL REHEARSAL Behavioral Rehearsal is a method employed for the acquisition of skills, particularly one related to social competence. To utilize behavioral rehearsal, a desired objective (behavior) is identified; for example, an individual will appropriately gain and sustain the attention of peers. Positive manifestations of this skill are then described (visually with pictures, television clips, etc., and verbally) and demonstrated. For the child with difficulties asking other students to play, desirable behavioral outcomes might be specific phrases (‘‘Can I play with you?’’ or ‘‘Do you want to play?’’). After observing these demonstrations, the individual engages in structured practice of this skill while coaching and feedback guide performance. Several modalities of behavioral rehearsal can assist in the acquisition of the skill in this context. Covert rehearsal presents a situation for the individual to mentally practice, while verbal rehearsal incorporates verbal processing of the situation. Overt rehearsal involves role-playing or modeling the skill. The individual should be encouraged to implement this skill in real-world situations to promote generalization. JEANNE HOLVERSTOTT 48
BEHAVIOR HEALTH REHABILITATION SERVICES (BHRS)
BEHAVIOR ANALYSIS. See See Applied Behavior Analysis BEHAVIOR ANALYST CERTIFICATION BOARD (BACB) The Behavior Analyst Certification Board (BCBA) is a nonprofit corporation that sets international standards for certification in behavior analysis. The certification process is voluntary, which means a practitioner may practice behavior analysis without certification from the BACB. However, the board and its certification process are intended to promote high quality practitioners in the field of behavior analysis as well as standards for consumers. The BACB currently offers two levels of certification: Board Certified Associate Behavior Analyst, and Board Certified Behavior Analyst. FURTHER INFORMATION Board Analyst Certification Board: http://www.bacb.com.
KATIE BASSITY BEHAVIOR ASSESSMENT SCALE FOR CHILDREN (BASC) Behavior Assessment Scale for Children (BASC) is an assessment tool designed to identify emotional disturbances and problem behaviors in children and adolescents (Manning & Miller, 2001). As such, the BASC is used to make educational evaluations, clinical diagnoses, and intervention plans. BASC encompasses five components: a Teacher Rating Scale (TRS); a Parent Rating Scale (PRS); a Self-Report Inventory; a Student Observation System (SOS); and a Structured Developmental History (SDH; Reynolds & Kamphaus, 1992). This multidimensional assessment is thought to include many aspects of behavior, not only problem behaviors, but also strengths and adaptive behaviors. REFERENCES Manning, S. C., & Miller, D. C. (2001). Identifying ADHD subtypes using the parent and teacher rating scales of the behavior assessment scale for children. Journal of Attention Disorders, 5(1), 41–51. Reynolds, C. R., & Kamphaus, R. W. (1992). Behavior Assessment System for Children–Manual. Circle Pines, MN: American Guidance Service.
YU-CHI CHOU BEHAVIOR CONTRACT. See Contingency Contracting BEHAVIOR HEALTH REHABILITATION SERVICES (BHRS) Behavioral Health Rehabilitation Services (BHRS), sometimes called wraparound services, are behavioral services provided in home, school, and community settings based on the recommendation of a psychiatrist or psychologist. Generally, these services are provided through the Office of Medical Assistance Programs and are put in place for those individuals who require more than outpatient services and otherwise might need a more restrictive environment. BHRS is composed of three levels of support: Behavioral Specialist Consultants (BSC), Mobile Therapists (MT), and Therapeutic Staff Support (TSS), in addition to the psychologist or psychiatrist. KATIE BASSITY 49
BEHAVIOR INTERVENTION PLAN
BEHAVIOR INTERVENTION PLAN A Behavior Intervention Plan (BIP) is a detailed plan that identifies the student’s maladaptive behavior, the function of behavior, and strategies to teach new socially appropriate behaviors. A BIP is framework to assist educators in using proactive teaching strategies when confronted with a target behavior. KATHERINE E. COOK BEHAVIORISM Behaviorism is the philosophy regarding the science of behavior and is considered one aspect of study within the science of behavior. Beginning as a school of thought within the field of psychology, behaviorism finds its greatest influence from the work of B. F. Skinner. There are several different kinds of behaviorism, some of which acknowledge the existence and influence of internal states and processes; others do not. It is this aspect of behaviorism that has created controversy. This controversy continues today, particularly as the application of applied behavior analysis in education with individuals with autism and other disabilities and disorders has found substantial research support. FURTHER INFORMATION Cooper, J., Heron, T., & Heward, W. (1987). Applied behavior analysis. Upper Saddle River, NJ: Pearson Education.
KATIE BASSITY BEHAVIOR MODIFICATION Behavior modification is the application of operant conditioning principles in everyday situations. However, behavior modification is a widely used term, particularly by educational practitioners, which generally refers to any interventions that seek to change behavior. This may include the use of proactive or antecedent interventions. These interventions focus on occurring prior to a behavior in order to prevent it. KATIE BASSITY BEHAVIOR PRINCIPLES Behavior principles are the main findings on which behaviorism is based. These principles express a functional relationship between behavior and something that controls it. For example, reinforcement and punishment are two principles of behavior. Behavior principles have been shown to be true across thousands of situations and people, but across other species as well. In other words, these may be considered laws of behavior. Although there are few behavior principles, each has many forms of application in practice. A method that puts a principle of behavior into practice is referred to as a behavior change procedure. FURTHER INFORMATION Cooper, J., Heron, T., & Heward, W. (1987). Applied behavior analysis. Upper Saddle River, NJ: Pearson Education.
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BETTELHEIM, BRUNO (AUGUST 28, 1903–MARCH 13, 1990) Bruno Bettelheim rose to prominence as a psychologist in the United States. Bettelheim’s significant theory claimed that unemotional and cold mothering was the essential cause of childhood autism. This theory, often called the ‘‘refrigerator mother’’ theory and now soundly repudiated by science, caused severe damage to thousands of families who believed his untested claims. He was convinced that autism had no organic basis, but that it instead was mainly influenced by the upbringing of mothers who did not want their children to live, either consciously or unconsciously, which in turn caused them to restrain contact with them and fail to establish an emotional connection. VIRGINIA L. COOK BIAS Shadish, Cook, and Campbell (2002) define bias as systematic errors in an estimate or an inference (p. 505). To be more specific, a bias is a prejudice in a general or specific sense, usually in the sense of having a predilection to one particular point of view or ideology. Any mental condition that would prevent an individual from being objective and impartial is called bias. In statistics, the word bias means that an estimator has been averaged over- or under-estimated (Cohen, 2001). It is a statistical sampling or testing error caused by systematically favoring a particular outcome over others. It has at least two different senses, one referring to something considered very undesirable and the other referring to something that is occasionally desirable. REFERENCES Cohen, B. H. (2001). Explaining psychological statistics (2nd ed.). Danvers, NY: John Wiley & Sons, Inc. Shadish, W. R., Cook, T. D., & Campbell, D. T. (2002). Experimental and quasi-experimental designs for generalized causal inference. Boston: Houghton Mifflin Company.
KAI-CHIEN TIEN BIOFEEDBACK Biofeedback refers to a continuous auditory or visual feedback of changes in bodily reactions or functions brought about by changes in an individual’s thoughts or emotions. Some examples of bodily functions could be breath, muscle tension, skin temperature, and heart rate. By providing information about a bodily state frequently, the individual can learn to recognize the link between thoughts, physical reactions, and feelings. Biofeedback is a form of self-management, and is developed to empower people to feel better about themselves. This is done by essentially changing destructive, problematic behavior and habits or inefficient patterns of coping into positive behaviors. Biofeedback works when a person is hooked up to electromechanical equipment, such as a blood pressure monitor. The equipment measures and records physiological functions and provides the individual with information about them. For example, a visual display on a computer screen, a tone or both may be used to indicate when blood pressure is below the predetermined level. Heart rate can also be measured and individuals can learn the association between the pace of the heartbeat and relaxation. An individual would be hooked up to a heart rate monitor. The external 51
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electronic monitoring device (EKG) would give the individual an immediate and continuous readout of the beating heart. Biofeedback is essentially a step-by-step process for self-control and makes use of many of the same techniques used by behavior therapists. Biofeedback involves providing the individual with information about physiological processes of which they are normally unaware. With the benefit of this additional information they can learn to bring voluntary control over physiological conditions that otherwise may have been potentially harmful to their health. Biofeedback involves developing an increased awareness of body states, learning voluntary control over these states, and learning to use these new skills in everyday life. The goal is for the individual to use the new skill to control the bodily state without the biofeedback instruments. This learning occurs through the biofeedback training through increased awareness of other physical sensations. The feedback equipment informs the individual when their body is producing too little or too much of the state it is measuring. This learning increases the individual’s self-control by returning the responsibility for one’s health to the individual and allows the individual to control their own stress responses. Biofeedback and relaxation training techniques have had efficacious applications and success for reducing anxiety, diabetes, tension and migraine headaches, insomnia, chronic pain, asthma, psoriasis, epilepsy, stroke, hypertension, and cardiac arrhythmia. For example, an individual with high blood pressure can learn to regulate their heart rate by being hooked up to a heart rate monitor. An auditory tone or a visual display can indicate the current rate. The individual can use relaxation techniques to lower the blood pressure. Once they learn to lower their blood pressure by using the biofeedback, then they can achieve the same outcome without the equipment. This can involve increased knowledge and attunement with their bodily sensations of higher and lower blood pressure during the biofeedback training sessions. STEPHANIE NICKELSON BLEULAR, EUGEN Eugen Bleular (April 30, 1857–February 9, 1940), a Swiss psychiatrist, was appointed professor of psychiatry at the University of Z€urich in 1898 and director of the University Psychiatric Hospital from 1898 to 1927. Considered one of the most influential psychologists of his time, Bleuler is best known today for his introduction of the terms schizophrenia in 1908 and autism in 1912. TERRI COOPER SWANSON BOARD CERTIFIED ASSOCIATE BEHAVIOR ANALYST (BCABA) The Board Certified Associate Behavior Analyst (BCABA) certification is a combination of coursework, experience supervised by a Board Certified Behavior Analyst (BCBA), and a standardized exam. In addition, a BCABA must have a minimum of a bachelor’s degree. In practice, a BCABA may supervise behavior analytic intervention and train others in behavioral interventions in areas similar to his or her training. However, the Behavior Analyst Certification Board (BACB) strongly recommends that a BCABA practice under a BCBA according to the standards of the Board. 52
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FURTHER INFORMATION Behavior Analyst Certification Board: http://www.bacb.com.
KATIE BASSITY BOARD CERTIFIED BEHAVIOR ANALYST (BCBA) The Board Certified Behavior Analyst (BCBA) certification is a combination of coursework, experience supervised by a BCBA, and a standardized exam. This certification requires more credit hours and longer experience than the Board Certified Associate Behavior Analyst (BCABA). Additionally, certification requires a minimum of a master’s degree. In practice, a BCBA may create and implement behavior analytic interventions based on current research, train others in behavioral principles and interventions, and conduct, analyze, and interpret a variety of behavioral assessments and data. See also Behavior Analyst Certification Board. FURTHER INFORMATION Behavior Analyst Certification Board: http://www.bacb.com.
KATIE BASSITY BOLLES SENSORY INTEGRATION Bolles Sensory Integration, also known as Bolles Sensory Learning Method, was developed by Mary Bolles, an occupational therapist, to re-educate and remediate an individual’s ability to process and integrate sensory information. This approach stimulates particular sensory systems to learn or relearn the ability to receive, process, and integrate sensory information. This specialized intervention combines specific visual, auditory, and vestibular stimuli into one sensory experience to facilitate effective sensory integration. To date, Bolles Sensory Integration is not supported by empirical data. KELLY M. PRESTIA BOWEL PROBLEMS Fecal incontinence and constipation are the common symptoms of bowel problems. Fecal incontinence occurs when feces are passed involuntarily and inappropriately (Royal College of Physicians, 1995), which usually causes urgency or passive leakage (Boyd-Carson, 2003). Constipation, on the other hand, occurs when there is a reduction in the frequency of passing stools and increased straining in passing stools (Arnaud, 2003; Storrie, 1997). Approximately 20 percent of children with autism or pervasive developmental disorders reportedly experience constipation (O’Moore, 1978). Children who experience bowel problems may produce loose stools, move their bowels three times per week or less, strain to move their bowels, have difficulties producing stools, pass gas frequently, and burp or belch frequently (Kerwin, Eicher, & Gelsinger, 2005). REFERENCES Arnaud, M. J. (2003). Mild dehydration: A risk factor of constipation? European Journal of Clinical Nutrition, 57, Supplement 2, S88–S95. Boyd-Carson, W. (2003). Faecal incontinence in adults. Nursing Standard, 18(8), 45–54.
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BRUSHING Kerwin, M., Eicher, P., & Gelsinger, J. (2005). Parental report of eating problems and gastrointestinal symptoms in children with pervasive developmental disorders. Children’s Health Care, 34(3), 221–234. O’Moore, M. (1978). Irish Journal of Psychology, 4, 33–52. Royal College of Physicians. (1995). Incontinence: Causes, management and provision of services. London: Royal College of Physicians. Storrie, J. B. (1997). Biofeedback: A first-line treatment for idiopathic constipation. British Journal of Nursing, 6, 152–158.
YU-CHI CHOU BRUSHING Brushing refers to a general technique of applying gentle but firm, rhythmic pressure with a stiff brush in an attempt to reorganize an individual’s sensory system to prepare them for learning. A specific protocol for brushing was developed by Patricia Wilbarger. See also Wilbarger Protocol. KELLY M. PRESTIA BULLYING Experts define bullying as repeated negative actions intended to harm or distress a target and characterized by a power imbalance, which can either be social, psychological, or physical in nature. Bullying can take many forms, including physical, verbal, social, or educational. ‘‘Educational bullying is when adults who perform as members of the school staff in some function use their power to either intentionally or unintentionally harm students, causing them distress’’ (Heinrichs, 2003, p. 27). Verbal bullying is the most common type of bullying for both boys and girls. Bullying is pervasive in our schools and communities. Almost one third of students are involved in moderate to frequent bullying either as a target or aggressor (Nansel et al., 2001). According to anecdotal reports, nearly all students say they have been teased and harassed at school (National Association of Attorneys General, 2000). Furthermore, every school day, 160,000 students miss school because they are afraid of being bullied (Fried & Fried, 1996). HIGH-RISK STUDENTS For some students, bullying experiences are severe, chronic, and frequent. Approximately 10–15 percent of children who are targeted for bullying fall into this high-risk group. A smaller proportion (5–10 percent) are so seriously targeted that without significant support from adults and peers, they will most likely not be able to overcome the consequences of their experiences and progress positively (Pepler & Craig, 2000). As a group, children with special needs are more frequent targets of bullying, and kids who talk, act, or think differently tend to suffer more bullying and exclusion than does someone with a physical challenge. Children and adults may have more difficulty understanding differences that cannot be seen such as significant social, behavioral, emotional, and/or sensory challenges, especially when these same individuals exhibit cognitive/academic strengths (Kavale & Forness, 1996; Little, 2002). For example, children with autism spectrum disorders (ASD) often make statements that are 54
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interpreted as rude because of their social deficits and tendency toward literal interpretations. Because these children may look ‘‘normal’’ physically, peers and adults may have little tolerance for this characteristic manifestation of their disorder (Heinrichs, 2003). BULLYING AND CHILDREN/YOUTH WITH AUTISM SPECTRUM DISORDERS (ASD) There is little research on bullying and children with ASD. Liza Little (2002) surveyed over 400 parents of children diagnosed with Asperger syndrome (AS) and nonverbal learning disability (NLD), ranging from 4 to 17 years, about bullying. Ninety-four percent of the parents indicated that their child had been bullied at least once during the previous year. Compared to studies of the general population, kids with AS were four times more likely to be bullied. The survey also indicated that children with Asperger syndrome and NLD experience a very high level of peer shunning that increases with age and peaks in high school—a time when peers are becoming more important in the lives of adolescents. Peer shunning is the act of ignoring or excluding children and includes such examples as not being invited to parties, sitting alone at lunch, and being picked last for activities. This study suggests that peer victimization and bullying of all kinds are pervasive among children diagnosed with AS. Clearly, children and youth with autism spectrum disorders are at considerable risk for bullying due to the innate characteristics of their disability related to their social, communication, behavioral, and sensory challenges, which set them apart from their peers and make it more difficult for them to recognize and respond when targeted by others. Because of bullying and peer shunning, children with AS may be excluded or have negative experiences when involved with the activities that commonly make up the social lives of our children. They are more likely to experience frequent, severe, and chronic bullying, placing them in the 5–10 percent of high-risk students who will need a significant amount of support and intervention from adults to progress positively in their school and community (Heinrichs, 2003). HOW CHILDREN COPE WITH BULLYING Recent research on bullying experiences in school that explore the social world of students indicates that our children do not feel safe (Garbarino & deLara, 2002; National Association of Attorneys General, 2000; Rigby, 1996). Garbarino and deLara’s work with teenagers found that the students did not feel safe in school and that their main coping mechanism is trying to predict the behavior of their peers and teachers. In other words, when they could predict someone’s behavior based on past experiences, they felt safer and could determine how to stay out of harm’s way. This included identifying ‘‘unowned spaces’’ or ‘‘hot spots’’ that should be avoided—typically less-supervised areas identified by students as being potentially unsafe (e.g., restrooms, hallways, and locker areas). Garbarino and deLara (2002) determined that students are ‘‘overfunctioning’’ trying to stay safe in school while adults seem to be ‘‘underfunctioning.’’ Students are expending energy on trying to predict behaviors in order to feel safe. This is energy that detracts from their ability to learn. The authors concluded that adults need to take more responsibility for providing a safe learning environment so students can attend to learning. 55
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IMPLICATIONS FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS If typical students are spending too much time and energy trying to predict behaviors so they can feel safe, we can assume that children with ASD expend even more time and energy predicting behavior. They are more frequently targeted for bullying and exclusion, and because of the innate characteristics of their disability will have more difficulty predicting the behaviors of others. Characteristically, individuals with ASD have difficulty taking the perspective of others or predicting what others may be thinking or feeling in social situations (Theory of Mind). This puts them at a great disadvantage, and as a result they will expend a great deal of time and energy trying to stay safe with very little success. Consequently, this may increase their already higher levels of anxiety and may eventually lead them to express negative feelings about school or even begin to exhibit school refusal (Heinrichs, 2003). KEY COMPONENTS OF A SUCCESSFUL BULLYING PREVENTION PROGRAM Successful bullying prevention programs must include a strong emphasis on awareness, understanding, and willingness on the part of all adults to be proactive and do what is necessary to provide a safe environment for all children. Ultimately, ‘‘we cannot expect the least empowered person, the targeted child, to bear the burden of ‘beating the bullies’ or to somehow figure out how to change his or her behavior in order to create a safer school environment’’ (Heinrichs, 2003, p. 15). This is especially true for high-risk students with ASD ‘‘because compared to their neurotypical peers, their social-communication disability renders them less skilled at effectively protecting themselves when bullying occurs’’ (Heinrichs, 2003, p. 15). Effective bullying prevention needs to involve the entire community of children/ youth and adults and include steps at the school, class, and individual level. Special attention and modifications must be considered when dealing with students with exceptionalities so they can be safe and continue to learn. Using special assessment tools such as the Modified Inventory of Wrongful Activities to accurately identify the extent of bullying in children with ASD, along with periodic social interviews, can help provide an accurate picture of their bullying and social experiences (Heinrichs, 2003). Drawing on best practices that will enable children with ASD to have more success in the social arena is also of great importance. Critical components of a successful bullying prevention program include: (a) identifying high-risk areas and increasing supervision with trained adults; (b) adults modeling appropriate behaviors; (c) promoting social-emotional learning for all students, involving parents; and (d) most importantly, a long-term commitment to making bullying prevention a priority. Adults are key to bullying prevention and our dedication to providing a safe environment for children to learn will ultimately make a difference for children with ASD and for all children. REFERENCES Fried, S., & Fried, P. (1996). Bullies and victims: Helping your child survive the schoolyard battlefield. New York: M. Evans and Company, Inc. Garbarino, J., & deLara, E. (2002). And words can hurt forever: How to protect adolescents from bullying, harassment, and emotional violence. New York: The Free Press. Heinrichs, R. (2003). Perfect targets: Asperger syndrome and bullying: Practical solutions for surviving the social world. Shawnee Mission, KS: Autism Asperger Publishing Co.
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BULLYING Kavale, K. A., & Forness, S. R. (1996). Social skills deficits and learning disabilities: A metaanalysis. Journal of Learning Disabilities, 29, 226–237. Little, L. (2002). Middle-class mothers’ perceptions of peer and sibling victimization among children with Asperger’s syndrome and nonverbal learning disorders. Issues in Comprehensive Pediatric Nursing, 25, 43–57. Nansel, T., Overpeck, M., Pilla, R., Ruan, W., Simons-Morton, B., & Scheidt, P. (2001). Bullying behaviors among U.S. youth: Prevalence and association with psychosocial adjustment. Journal of the American Medical Association, 285, 2094–2100. National Association of Attorneys General. (2000). Bruised inside: What our children say about youth violence, what causes it, and what we need to do about it. Retrieved July 7, 2004, from http://www.ct.gov/ag/lib/ag/children/bruised.pdf. Pepler, D. J., & Craig, W. (2000). Report 60: Making a difference in bullying. Toronto: LaMarsh Centre for Research on Violence and Conflict Resolution. Rigby, K. (1996). Bullying in schools: And what to do about it. London: Jessica Kingsley Publishers.
FURTHER INFORMATION Gray, C. (2004). Gray’s guide to bullying. Jenison Autism Journal, Spring 2004. Olweus, D. (1993). Bullying at school: What we know and what we can do. Oxford: Blackwell Publishers.
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C CAREER PLANNING Prior to adulthood, it is essential that caregivers, teachers, and community supports ensure individuals with autism have the opportunities to acquire the skills necessary to be successfully employed in a desired profession. The Individuals with Disabilities Education Act (IDEA, 2004) mandates that each student with a disability will begin to transition from the classroom to the workforce no later than age 16. However, when the student reaches adulthood, the Vocational Rehabilitation Act and Americans with Disabilities Act mandate only equal access and not the provision of necessary services and supports once access is obtained. The career planning process is based on individual needs, preferences, interests, and the individual’s participation in job sampling, family input, comprehensive vocational assessments, and structured community experience (DeStefano and Wermuth, 1992). Literature on career/transition planning presents a consensus of best practices. Items are grouped in relation to (a) transition planning, (b) transition implementation, or (c) transition evaluation. Transition planning includes development of long-term goals, short-term objectives, a plan for posttransition services, case management services, and a timeline for transition activities. Transition implementation includes vocational, leisure, and residential options; transportation training; money management; and vocational skills training. Transition evaluation comprises long-term support and follow-up of specific outcome evaluations (Stowitschek, 1992). The most important contribution to transitioning is the parents’ role as an advocate for their child (Friedlander, 1989). Parental advocacy, support, and input become more critical as their child enters into adulthood. Given the complexity and long-term needs of these individuals, comprehensive planning is a necessity and must include the individual, parents, educational staff, and agency representatives (IDEA, 2004). Considerations for ongoing support services throughout adulthood must include a structured community experience, community-referenced behavior management and social skills training (Berkell, 1992), and the incorporation of individual choice (Winking, O’Reilly, & Moon, 1993). To obtain suitable employment there are several routes that an individual with ASD can choose. First, attend a two- or four-year college to receive the necessary training for a professional career. Second, prepare a portfolio for potential employers and seek out
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mentors in the business community that recognize their abilities and potential to enhance their skill base. Third, contact vocational rehabilitation services to set up a work evaluation for assessment of job skills, job sampling, and job training. Fourth, contact a local vocational training center to apply for services in a sheltered workshop setting. Most importantly, all of these options can be incorporated into a student’s Individual Service Plan and begin working on discovering the best career option when they turn 16. REFERENCES Berkell, D. E. (1992). Transition issues for secondary school students with autism and developmental disabilities. In F. R. Rusch, L. DeStefano, J. Chadsey-Rusch, L. A. Phelps, & E. Szymanski (Eds.), Transition from school to adult life: Models, linkages, and policy (pp. 460–472). Sycamore, IL: Sycamore. DeStefano, L., & Wermuth, T. R. (1992). IDEA (PL 101–476): Defining second generation of transition services. In F. R. Rusch, L. DeStefano, J. Chadsey-Rusch, L. A. Phelps, & E. Szymanski (Eds.), Transition from school to adult life: Models, linkages, and policy (pp. 537–549). Sycamore, IL: Sycamore. Friedlander, B. (1989). Becoming an advocate. In M. Powers (Ed.), Children with autism: A parent’s guide (pp. 231–252). Rockville, MD: Woodbine House. Individuals with Disabilities Education Improvement Act of 2004. Public Law 108–446. U.S. Code. 20 2004. [section] 1400 et seq. Stowitschek, J. J. (1992). Policy and planning in transition programs at the state agency level. In F. R. Rusch, L. DeStefano, J. Chadsey-Rusch, L. A. Phelps, & E. Szymanski (Eds.), Transition from school to adult life: Models, linkages, and policy (pp. 519–536). Sycamore, IL: Sycamore. Winking, D. L., O’Reilly, B., & Moon, M. S. (1993). PREFERENCE: The missing link in the job match process for individuals without functional communication skills. Journal of Vocational Rehabilitation, 3, 27–42.
STACEY L. BROOKENS CARTOONING Cartooning is a visual interactive strategy that can be designed to assist a person in his understanding a social situation. Talking bubbles, which are drawn from the character’s mouth, and thinking bubbles, drawn from the character’s head, are used to illustrate verbal expression, unspoken thoughts, and cues about what is going on. This is done in the same way as in traditional comics. Cartooning may be used to illustrate the order in which certain events will happen, to tell a story, to assist in organizing tasks, to clarify what people mean when they use certain words, or to problem solve a particularly difficult social conflict. Examples of cartooning include comic strip conversations (Gray, 1994), cognitive picture rehearsal (Groden & LeVasseur, 1995), and Social Mapping (Curtis & Dunn, 1999). The social disorder in autism is perhaps the least understood aspect of the autism disorder (Klin & Volkmar, 1993). Children on the autism spectrum do not appear to understand why people do what they do, why they think the way they think, or why they make the decisions they make (Baron-Cohen & Howlin, 1993). Simon BaronCohen refers to this as an inability to ‘‘mind read’’ (Baron-Cohen, 1995). Tony Attwood explains this as ‘‘lacking the ability to think about thoughts’’ (Attwood, 1998). A person who has difficulty in this area of social understanding is likely to find school and other social settings threatening and difficult to interpret. Why does a teacher make the decisions she makes? Why does a peer play with you one day on the playground but not the next day? Why do some teachers ignore misbehavior and others promptly call attention to it? When, if ever, is it okay to swear? Why do people want 60
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me to say ‘‘hi’’ to them in the hallway? These and other everyday questions surrounding social behavior can be directly taught through the use of cartooning. COMIC STRIP CONVERSATIONS A way of making social language and social behavior more concrete, cartooning is best used proactively, or as a teaching tool prior to a situation that typically causes problems. Cartooning can be used to teach new or alternative behavior. When confronted with a social problem, students with autism often become anxious and frustrated. This frustration can heighten when a parent or teacher attempts to correct the problem, and a face-to-face confrontation can increase the frustration and stress even more. Using cartooning strategies to explain what went wrong and to offer solutions can take the ‘‘edge’’ off such otherwise volatile situations. When using cartooning strategies, it is important to recognize and validate the perspective of the person with ASD even if you consider that perspective irrational. Perspective taking is a two-way street, and without mutual understanding and respect, it can be difficult to motivate the person with ASD. Behavioral conflicts between individuals with ASD and their parents, teachers, or peers often occur because of a communication breakdown or a misinterpretation. For example, the person with ASD may misinterpret a person’s nonverbal social language (facial expression, tone of voice, etc.) or her reaction to a particular situation. A comic strip conversation as defined by Gray (1994) can be used to visually review the conflict situation. For example, while John was at his fifth-grade environmental retreat, he decided to take off all of his clothes and run naked through the cabin. The other boys in John’s cabin were mortified, embarrassed, and confused, so they laughed. John misinterpreted their laughter to mean that his behavior was funny. He continued to do it even though his counselor told him that the behavior was inappropriate. A comic strip conversation was used to clarify for John what had happened. As illustrated in Figure 1, stick figures
Figure 1 Comic Strip Conversations for the Individual’s Perspective
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Figure 2 Comic Strip Conversations for the Peers’ Perspectives
were drawn to illustrate the situation. The environment was labeled, and the words of each person were written in their talking bubbles. John was then asked to fill in his thinking bubble. Now the counselor was able to acknowledge John’s perspective. John was then asked to guess what might have been in the other campers’ thinking bubbles when he ran naked (see Figure 2). He was able to fill in the thinking bubbles with his ideas. Again, this enabled the counselor to acknowledge John’s perspective and give him more information by filling in other ideas about how others felt about his behavior. This method of processing an incident increased the accuracy of John’s thinking about what happened and how others were affected. Gray (1994) expands on the comic strip conversation by suggesting that color be added to help clarify the intent of someone’s words (see Figure 3). This can be particularly helpful for the student who has difficulty ‘‘reading’’ nonverbal social cues such as tone of voice. For example, consider the example of John at camp. If one of the other boys had said to John that his behavior would make him really popular with the other boys, the adult working with John may consider the use of color to more clearly demonstrate the boy’s motivation for saying those words. For example, teasing or sarcastic words may be defined prior to the conversation as being red. Honest or innocent words may be defined as being blue. When John tells the adult that he said, ‘‘How do you like me now?’’ he reports that he was serious and wanted an honest answer. In this case John’s words should be blue to illustrate their honest motivation. On the other hand, Edward’s words are red to clearly illustrate for John that he did not mean what he said literally, that he was being sarcastic. Many individuals with ASD have difficulties understanding another person’s perspective or how another person feels about certain situations. The ability to understand that your actions have an impact on those around you and that others can contribute to making your experiences pleasurable is at the core of social 62
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Figure 3 How Color Can Clarify the Intent of Words
understanding. If a person with autism does not understand another person’s contribution to a social interaction, he may be less likely to seek out interactions or recognize the value of social interactions. COGNITIVE PICTURE REHEARSAL Cognitive picture rehearsal (Groden & LeVasseur, 1995) combines cartooning with repetitive practice to teach self-control. This method involves presenting a behavioral sequence in the form of cartoons with a written script. The goal is to teach a skill or response to replace an unwanted behavior. The method also builds in the direct teaching of relaxation by prompting the use of relaxation strategies when faced with a stressful situation. Prior to using this method, it is important to analyze the behavior being addressed so that you can accurately describe when it typically happens, under what conditions it typically happens, what happens after the unwanted behavior is exhibited, and how do those around her react. An example of how this might work would be the situation with Claire, a 4-year-old with ASD who consistently screams and hits other children during morning groups (see Figure 4). The teacher has determined that the breakdown occurs while she is waiting for her turn. The teacher knows that allowing Claire to hold a preferred toy helps her to relax while waiting. After drawing a cartoon, the teacher reviews the story with Claire repetitively, especially immediately prior to group time. This story can be varied over time to teach new routines within the same group time. SOCIAL MAPPING Social Mapping (Curtis & Dunn, 1999) is a strategy used to review social situations, events, field trips, family reunions, and so on, in a concrete visual way. A social map clearly illustrates the contributions of all the people involved. Although social maps 63
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Figure 4 How Cognitive Picture Rehearsal Can Teach Skills
are not limited to cartoons, cartooning can be an effective way to present the information including the use of stick figures. The process begins by writing what Gray has called a fear-reducing story (1994). This is a story made up of descriptive sentences about the upcoming event. The story might mention who the child will be sitting next to on the bus or car ride, what the child is hoping or anticipating about the event, and what the teacher, peer or parent is hoping or looking forward to. This sets the stage for a more relaxing event, while it highlights some of the ways another person may influence the social outing. After the event, the person with ASD fills out a worksheet designed to prompt thoughts about the trip and, ultimately, formulate his or her contribution to the social map. Each person involved with the trip fills out a worksheet of their own and brings it to the group meeting or family gathering after the trip. The person organizing the event should bring a large sheet of paper or poster board, markers, and glue. Each person takes a turn and shares what he or she recalled on the worksheet, using it as a visual guide. The social map is created using stick figures labeled with each person’s name and details of each person’s input based on the meeting. Photographs, particularly photos of the person with ASD having fun with a peer or family member, can add interest to the map. The end product is a visual representation of a social event that displays pieces of information from everyone’s perspective. The map can be hung in the classroom or at home to be reviewed and studied over time, not unlike a photo album of someone’s family vacation. 64
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Figure 5 Social Map Worksheet
An example might be Mrs. Smith taking her third-grade class to the local museum. Prior to the trip, she writes a brief story about what the children will see at the museum. She knows her student with ASD is concerned with buses, so she includes the fact that they will be taking a large bus (and includes the bus company name). She assigns each student to a travel partner and states this in the story. She writes that she is very excited about the dinosaur exhibit and about eating lunch at the park. She asks for input prior to writing the story so that she can include some other perspectives. Mrs. Smith carefully corrects any unrealistic hopes and clarifies any rules that would be helpful to remember. The story is then sent home with each student to be shared with parents, read, and reread. After the museum trip, Mrs. Smith hands out the social map worksheet (Figure 5) and assists her students in filling it out. She has the partners work together to help each other by prompting memories. When the worksheets are completed, Mrs. Smith gathers her class into a group and creates a social map using the information from the worksheets. She puts thoughts in the thinking bubbles based on the worksheets and adds pictures to increase understanding and motivation (see Figure 6). Like all good teaching strategies, cartooning is best done proactively. Creating time to draw and review cartoons throughout the day is beneficial. However, cartoons can also be drawn in a crisis situation when verbal processing is not productive. By drawing what is going on using talking bubbles and thinking bubbles, you can eliminate the need to talk out loud. The vocabulary used in cartooning is less abstract and more direct than language typically used in social situations. A wonderful example of how this can assist in comprehension comes from my friend, Emily. Emily had a tendency to say what was on her mind, whether it hurt someone’s feelings or not. Cartooning was used to help her understand that even though she might think these things, the words should stay in her thinking bubble and not get into her talking bubble. Emily announced to her mother that she got it, that the best way to not hurt others’ feelings was to ‘‘not pop your think bubble!’’ 65
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Figure 6 Classroom Social Map
REFERENCES Attwood, T. (1998). The links between social stories, comic strip conversations and the cognitive models of autism and Asperger syndrome. Retrieved on October 17, 2005, from www.tonyattwood.com. Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press. Baron-Cohen, S., & Howlin, P. (1993). The theory of mind deficit in autism: Some questions for teaching and diagnosis. In S. Baron-Cohen, H. Tager-Flushberg, & D. Cohen’s (Eds.), In understanding other minds perspectives from autism (pp. 466–480). Oxford: Oxford University Press. Curtis, M., & Dunn, K. (1999, Spring). Social mapping. The Morning News (pp. 7–8). Jenison, MI: Jenison Public Schools. Gray, C. (1994). Comic strip conversations. Arlington, TX: Future Horizons. Groden, J., & LeVasseur, P. (1995). Cognitive picture rehearsal: A System to teach self-control. In K. Quill, In teaching children with autism (pp. 287–306). New York: Delmar Publishers. Klin, A., & Volkmar, F. (1993). Social development in autism: Historical and clinical perspectives. In S. Baron-Cohen, H. Tager-Flushberg, & D. Cohen (Eds.), In understanding other minds’ perspectives from autism (pp. 40–55). Oxford: Oxford University Press.
KARI DUNN BURON CASEIN-FREE Milk contains three major components: lactose (which is milk’s sugar), caseins (which are mild proteins), and fat. When a person needs a casein-free diet, that person needs to avoid milk because of the proteins within the milk. Although this seems rather simple, one needs to become extremely mindful of reading product ingredients. Hidden milk ingredients include whey, sodium caseinate, sodium lactylate, protein, high protein, and protein enriched products. Some families of children with ASD have decided to try a 66
CENTRAL AUDITORY PROCESSING DISORDER (CAPD)
gluten-free/casein-free diet as they believe the gluten and casein may adversely affect their child’s neurological processes. Some parents report that removing gluten and casein from their child’s diet results in increased attention as well as reduced tantrums. FURTHER INFORMATION www.gfcfdiet.com: This Web site has resources for parents of children with ASD who wish to implement a gluten-free/casein-free diet.
MAYA ISRAEL CATATONIA Catatonia is a condition marked by changes in muscle tone or activity associated with a large number of mental and physical illnesses. There are two distinct sets of symptoms that are characteristic of this condition. In catatonic stupor, the individual experiences a deficit of motor (movement) activity that can render him/her motionless. Catatonic stupor is marked by immobility and a behavior known as cerea flexibilitas (waxy flexibility) in which the individual can be made to assume bizarre (and sometimes painful) postures that they will maintain for extended periods of time. The individual may become dehydrated and malnourished because food and liquids are refused. Catatonic excitement, or excessive movement, is associated with violent behavior directed toward oneself or others. The individual is extremely hyperactive, although the activity seems to have no purpose. A variety of symptoms are associated with catatonia. Among the more common are echopraxia (imitation of the gestures of others) and echolalia (parrot-like repetition of words spoken by others). Other signs and symptoms include violence directed toward oneself, the assumption of inappropriate posture, selective mutism, negativism, facial grimaces, and animallike noises. Recognition of catatonia is made on the basis of specific movement symptoms. These include odd ways of walking such as walking on tiptoes or ritualistic pacing, and rarely, hopping and skipping. Repetitive odd movements of the fingers or hands, as well as imitating the speech or movements of others, also may indicate that catatonia is present. JEANNE HOLVERSTOTT CAT SCAN Computed axial tomography (CAT scan or CT scan) is a radiological study that essentially takes a rapid series of x-ray pictures from many angles, while the person is lying flat on a table. The images are then run through a computer, which generates a series of three dimensional views or ‘‘slices’’ that can show organs and soft tissues as well as bones. These studies may be done with or without contrast dye to enhance the image of the specific organs or body systems. BRUCE BASSITY CENTRAL AUDITORY PROCESSING DISORDER (CAPD) Central auditory processing disorder (CAPD) is a dysfunction of the coordination between the ears and the brain but is not a hearing impairment. There are many possible causes for CAPD including head trauma, lead poisoning, and frequent and severe ear infections. Additionally, sometimes the causes of CAPD cannot be determined. The symptoms of CAPD can vary greatly, but often include the following: (a) sensitivity to loud sounds; (b) difficulty with reading, writing, spelling, or speech and 67
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language; (c) difficulty comprehending abstract information; (d) difficulty with organization; and (e) difficulty following conversations. A child displaying the symptoms of CAPD may be misdiagnosed as ADHD due to the commonality of symptoms. In addition, CAPD can occur in conjunction with other disabilities making the diagnosis of CAPD difficult. The only way of obtaining a diagnosis of CAPD is through an audiologist who performs central auditory processing tests to determine if there is a problem. Once a child is diagnosed with CAPD, the child is referred to a speech pathologist. The main areas of difficulty for children with CAPD are: (a) auditory attention problems (not remembering directions, materials, and so on); (b) auditory discrimination problems (difficulty hearing the difference between words that sound similar); (c) auditory figure-ground problems (difficulty maintaining attention where there is background noise); and (d) auditory cohesion problems (difficulty drawing conclusions, understanding math problems, following complex directions). There are several things teachers and parents can do to help children with CAPD. Because all children with CAPD have unique strengths and areas of difficulty, there is no generic list of accommodations that can help all children with CAPD. However, the following is a list of suggestions that may be helpful. When required to complete important tasks, reduce background noise as much as possible. For example, when studying, provide a quiet study area. When taking tests, provide an area away from loud noises (e.g., not near the cafeteria!). Help the child recognize that he or she must look at and attend to the person talking. Ask the child to repeat important directions to make sure they have understood them completely. Make sure the child understands the directions by asking specifics required in the assignment. Develop a system of organization for school materials, schedule of events, and other areas that are difficult for the child to keep organized. Maintain a positive attitude and do not blame the child for displaying the previously mentioned difficulties. FURTHER INFORMATION Friel-Patti, S. (1999). Clinical decision-making in the assessment and intervention of central auditory processing disorders. Language, Speech, and Hearing Services, 30(4), 345–352. Rosen, S. (2005). A riddle in a mystery inside an enigma: Defining central auditory processing disorder. American Journal of Audiology, 14(2), 139–142.
MAYA ISRAEL CENTRAL COHERENCE Central coherence refers to the tendency to process information in a global way by integrating and connecting all sources of information to elaborate higher levels of meanings. Persons who process information in typical ways show a tendency to use the context to make sense of the events. However, persons within the autism spectrum tend to process only parts or details of the information, disregarding the context or failing to process the information as a whole. The consequences of a poor central coherence, for example, are the inability to see connections among themes and experiences, generalizing and applying new knowledge to different situations, or inflexibility in their points of view. 68
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FURTHER INFORMATION Briskman, J., Happe, F., & Frith, U. (2001) Exploring the cognitive phenotype of autism: Weak central coherence in parents and siblings of children with autism: II. Real life skills and preferences. Journal of Child Psychiatry, 42, 309–316. Cumine, V., Leach, L., & Stevenson, G. (1998). Asperger Syndrome, a practical guide for teachers. London: David Fulton Publishers. Frith, U. (2003). Autism explaining the enigma. Oxford: Blackwell Publishing. Happ, F. (1999). Autism: Cognitive deficit or cognitive style? Trends in Cognitive Sciences, 3, 216–222. Jolliffe, T., & Baron-Cohen, S. (2001). A test of central coherence theory: Can adults with high-functioning autism or Asperger syndrome integrate fragments of an object? Cognitive Neuropsychiatry, 6, 193–216.
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CERTIFIED BEHAVIOR ANALYST. See Board Certified Behavior Analyst CHAINING Chaining requires that a task be divided into several smaller steps. The steps are then taught in order, either reverse or forward. As each step is mastered, a new step is added onto the ‘‘chain.’’ This is a similar process to task analysis, but steps are always taught in the context of the whole task. In reverse chaining, the last step is taught first, and the previous steps are completed by another individual or are prompted. Once able to complete the last step independently and on a consistent basis, the individual is then taught the second-to-last step, and the process continues. KATIE BASSITY
CHECKLIST FOR AUTISM IN TODDLERS (CHAT) The Checklist for Autism in Toddlers (CHAT; Baron-Cohen et al., 1996; Baird et al., 2000) is a screen for autism given at around 18 months of age. The CHAT is administered by parents or a primary health care worker, and consists of nine short questions asked of the parent about the child’s behavior, and five short observational tasks. Research indicated that if a child failed the CHAT it was 97 percent likely that they had autism spectrum disorders (ASD). However, the CHAT in its original format missed many cases of Asperger syndrome and subtler ASDs, and research is now underway to revise the instrument into the Q-CHAT (Quantitative Checklist for Autism in Toddlers). Other adaptations include the M-CHAT (Modified Checklist for Autism in Toddlers). REFERENCES Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: A six year follow up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694–702. Baron-Cohen, S., Cox., A., Baird, G., Swettenham, J., Nightingale, N., Morgan, K., Drew, A., & Charman, T. (1996). Psychological markers in the detection of autism in infancy in a large population. British Journal of Psychiatry, 168, 158–163.
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CHECKLIST FOR OCCUPATIONAL THERAPY
CHECKLIST FOR OCCUPATIONAL THERAPY The Checklist for Occupational Therapy (OTA-Watertown, 1997) is a series of four checklists—infant, preschool, school-age, and adolescent-adult—providing information about certain behaviors and whether they are seen frequently or not. The items look at behaviors that can be related to sensory processing difficulties (movement, sound, sight, self-regulation, touch), although the categories of behaviors change across the age ranges. The infant-through-school-age checklists ask whether a behavior occurs frequently or not, whereas the adolescent-adult checklist can be rated on a 1–5 scale with 1 being never and 5 being always. The instrument can be completed by teachers, day care providers, occupational therapists, or physical therapists without specific prior training. REFERENCE Occupational Therapy Association [OTA]-Watertown, (1997). Checklist for occupational therapy. Watertown, MA: OTA-Watertown. Retrieved September 17, 2006, from http://www.otawatertown.com/sensintdys.html.
LISA ROBBINS CHELATION Chelation is a highly controversial medical procedure that involves the use of chelating agents, which include DMSA (dimercaptosuccinic acid), DMPS (2,3-dimercapto1-propanesulfonic acid), and ALA (alpha lipoic acid) to remove heavy metals such as mercury, iron, arsenic, and lead from the body. Chelation is often administered by intravenous infusions or by swallowing oral pills. FURTHER INFORMATION Autism Research Institute:
[email protected]. National Autistic Society: www.nas.org.uk.
KATHERINE E. COOK CHILD BEHAVIOR CHECKLIST FOR AGES 11=2 TO 5 The Child Behavior Checklist for Ages 11=2 to 5 years is the most widely used general behavioral scale for assessing children. The Child Behavior Checklist is a test consisting of 99 items designed to assess a child’s behavior and social competency, as reported by the parents. It provides descriptions of problems and disabilities as well as what concerns parents most about their child and the best things about the child. The tool requests that parents rate their child on a scale of not true, sometimes true, or true on a variety of social issues. Administration time ranges from 10 to 20 minutes (Hart & Lahey, 1999). REFERENCE Hart, E. & Lahey, B. (1999). General child behavior rating scales. In D. Shaffer, C. Lucas, & J. Richters (Eds.), Diagnostic assessment in child and adolescent psychopathology (pp. 65–87). New York: Guilford Press.
AMY BIXLER COFFIN CHILDHOOD ASPERGER SYNDROME TEST (CAST) The Childhood Asperger Syndrome Test (CAST; Scott, Baron-Cohen, Bolton, & Brayne, 2002; Williams et al., 2005; Williams et al., 2006) is a 37-item parental report questionnaire for children ages 4 to 11 years, asking for simple yes/no information as 70
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to whether the child shows certain social or communicative behaviors that are thought to be associated with Asperger syndrome or broad autism spectrum disorder (ASD). Unlike many other screening tests, the CAST has been validated for use with a nonclinical sample and can therefore be used as a screen for ASD prior to referral into services. Research indicates the CAST has a sensitivity of 100 percent (it can detect every case of ASD), with a specificity of 97 percent (it tends towards being overinclusive, misidentifying 3 percent as having possible ASD). Research indicates that those who are misidentified typically have some other difficulty with language or social skills. REFERENCES Scott, F. J., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). The CAST (Childhood Asperger Syndrome Test): Preliminary development of a UK screen for mainstream primary school age children. Autism, 6, 9–31. Williams, J., Allison, C., Scott, F. J., Stott, C., Bolton, P., Baron-Cohen, S., & Brayne, C. (2006). The Childhood Asperger Syndrome Test (CAST): Test-retest reliability. Autism, 10, 415–427. Williams, J., Scott, F. J., Stott, C., Allison, C., Bolton, P., Baron-Cohen, S., & Brayne, C. (2005). The CAST (Childhood Asperger Syndrome Test): Test accuracy. Autism, 9, 45–68.
FIONA J. SCOTT CHILDHOOD AUTISM RATING SCALE (CARS) The Childhood Autism Rating Scale (CARS) is a standardized instrument designed to assist in the diagnosis of autism. The rating scale can be used with children as young as 2 years of age. Each of 15 items covers a specific characteristic, ability, or behavior that includes relationships with people, imitation, affect, use of body, relation to nonhuman objects, adaptation to environmental change, visual responsiveness, auditory responsiveness, near-receptor responsiveness, anxiety reaction, verbal communication, nonverbal communication, activity level, intellectual functioning, and the clinician’s general impression. These items are rated by the specialist using a 7-point system based on the degree to which the child’s behavior deviates from that of a typical child in the same age group. A total score is computed by summing the individual ratings on each of the 15 items. Children who score above a predefined level are categorized as having autism. Based on these scores, identified children are further classified into categories ranging from mild and moderate to severe. See also standardization. FURTHER INFORMATION DiLalla, D., & Rogers, S. J. (1994) Domains of the childhood autism rating scale: Relevance for diagnosis and treatment. Journal of Autism and Developmental Disorders, 24, 115–128. Rellini, E., Tortolani, D., Trillo, S., Carbone, S., & Montecchi, F. (2004) Childhood Autism Rating Scale (CARS) and Autism Behavior Checklist (ABC): Correspondence and conflicts with DSM-IV criteria in diagnosis of autism. Journal of Autism and Developmental-Disorders, 34, 703–708. Schopler, E., Reichler, R., DeVellis, R. F., & Daly, K. (1980). Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS). Journal of Autism and Developmental Disorders, 10, 91–103. Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The Childhood Autism Rating Scale (CARS). Los Angeles: Western Psychological Services.
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CHILDHOOD DISINTEGRATIVE DISORDER
CHILDHOOD DISINTEGRATIVE DISORDER Childhood disintegrative disorder (CDD) is a rare disorder with distinctive clinical features, often has a poor prognosis, and is sometimes associated with encephalopathy. The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000) specifies that following at least 2 years of normal development as manifested by age-appropriate verbal and nonverbal communication, social relationships, and play and adaptive skills there is a clinically significant loss of skills in at least two of the following areas: (a) expressive or receptive language, (b) social skills or adaptive behavior, (c) bowel or bladder control, (d) play, and (e) motor skills. In addition, there must be abnormalities of functioning in at least two of the following areas: (a) qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity); (b) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain conversation, stereotyped and repetitive use of language, lack of varied make-believe play); and (c) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms. It is clear from the previous description that there is a substantial degree of overlap in presentation between CDD and autism spectrum disorders. The distinct difference is that in autism spectrum disorders a child may not develop appropriate skills, whereas in CDD there was clearly normal level of skill followed by loss of that previously acquired skill. However, Heller (1908), who first reported on the condition, also noted that children presented with anxiety and affective symptomatology such as moody, negativistic behaviors, and other professionals have since emphasized deterioration in self-help skills (Volkmar, 1992, 1994). These characteristics are not emphasized in the DSMIV-TR (2000) description. The etiology of the condition is not yet clear, although there has been some association noted with neurological disorders (Evans-Jones and Rosenbloom, 1978), and with known medical conditions such as measles encephalitis. Heller (1908) did not include any known conditions as being associated with CDD, and in terms of a diagnosis specific neurological diseases should be ruled out. Those that should be excluded include tuberous sclerosis complex (Creak, 1963), neurolipidoses (Malamud, 1959), metachromatic leukodystrophy (Corbett, Harris, Taylor, & Trimble, 1977), and subacute sclerosing panencephalitis (Rivinus, Jamison, & Graham, 1975). Prognosis of the condition is generally poor. Volkmar (1992) followed up on 76 cases over a period of 1 to 22 years, and reported that a minority showed minimal improvements while three quarters showed a static course of presentation, with overall functioning in the moderate to severe range of mental retardation. All the children required special education and commonly received services in residential facilities. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Corbett, J., Harris, R., Taylor, E., & Trimble, M. (1977). Progressive disintegrative psychosis of childhood. Journal of Child Psychology and Psychiatry, 18, 211–219. Creak, E. M. (1963). Childhood psychosis: A review of 100 cases. British Journal of Psychiatry, 109, 84–89.
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CHILDREN’S CATEGORY TEST (CCT) Evans-Jones, L. G. & Rosenbloom, L. (1978). Disintegrative psychosis in childhood. Developmental Medicine and Child Neurology, 20, 462–470. Heller, T. (1908). Dementia infantalis. Zeitschrift fur die Erforschung und Behandlung des Jugenlichen Schwachsinns [Journal for Research and Treatment of Juvenile Feeblemindedness], 2, 141–165. Malamud, N. (1959). Heller’s disease and childhood schizophrenia. American Journal of Psychiatry, 116, 215–218. Rivinus, T. M., Jamison, D. L., & Graham, P. J. (1975). Childhood organic neurological disease presenting as psychiatric disorder. Archives of Disease in Childhood, 50, 115–119. Volkmar, F. R. (1992). Childhood disintegrative disorder: Issues for DSM-IV. Journal of Autism and Developmental Disorders, 22, 625–642. Volkmar, F. R. (1994). Childhood disintegrative disorder. Child and Adolescent Psychiatric Clinics of North America, 3, 119–129.
FIONA J. SCOTT CHILDREN’S ATTRIBUTIONAL STYLE QUESTIONNAIRE (CASQ) The Children’s Attributional Style Questionnaire (CASQ: Seligman et al., 1984) is designed to assess attributional style in children ages 8–13. The 48 items are divided equally between positive (‘‘You get an A on a test’’) and negative events (‘‘You break a glass’’). Respondents select between two possible causes for the statement, and each option represents the presence or absence of an attribution dimension (e.g., internal or external cause). Attributions for each dimension are computed by calculating the number of internal, stable, or global responses. FURTHER INFORMATION Abramson, L. Y., Alloy, L. B., Kaslow, N. J., Peterson, C., Seligman, M. E., & Tanenbaum, R. L. (1984). Attributional style and depressive symptoms among children. Journal of Abnormal Psychology, 93(2), 235 –238.
JEANNE HOLVERSTOTT CHILDREN’S CATEGORY TEST (CCT) Children’s Category Test (CCT; Boll, 1993) is an individually administered instrument designed to assess nonverbal learning and memory, concept formation, and problem-solving abilities in children ages 5–16 years. It provides information on the child’s ability to change problem-solving strategies, to develop alternative solutions, and to benefit from experience. This constellation of mental processes is highly related to fluid intelligence, or those abilities that involve problem solving with novel material. Because of its nonverbal nature, the child’s reasoning ability can be assessed independently of his/her expressive language skill level. Thus, the CCT is less educationally dependent than verbal reasoning measures. In addition, the CCT directly assesses the cognitive processes required for successful academic achievement by measuring the child’s ability to learn, to solve problems, and to develop, test, and modify hypotheses. The CCT may be used to determine whether a child is able to perform these learning-based processes despite the existence of learning disorders, verbal or motor deficits, neurological deficits, or emotional handicaps. Because of its nonverbal, untimed, and nonmotor format, the CCT can be used to assess a wide range of children for whom other, more traditional, psychometric procedures are inappropriate. REFERENCE Boll, T. (1993). The Children’s Category Test. San Antonio, TX: PsychCorp.
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CHILDREN’S DEPRESSION INVENTORY (CDI)
CHILDREN’S DEPRESSION INVENTORY (CDI) The Children’s Depression Inventory (CDI; Kovacs, 1992) is a self-report test that assists in the assessment of the cognitive, affective, and behavioral signs of depression in children and adolescents 6 to 17 years old. This assessment takes approximately 15 minutes to complete with the respondent selecting the statement that best describes his or her feelings for the past 2 weeks for 27 different items. The CDI contains six scales commonly associated with depression (Negative Mood, Interpersonal Difficulties, Negative Self-Esteem, Ineffectiveness, and Anhedonia); and it is designed for a variety of situations, including schools, child guidance clinics, pediatric practices, and child psychiatric settings. REFERENCE Kovacs, M. (1992). The Children’s Depression Inventory. North Tonawanda, NY: Multi-Health Systems, Inc.
JEANNE HOLVERSTOTT CHRONOLOGICAL AGE Chronological age refers to the number of days or years a child has lived since birth. To determine an individual’s chronological age, subtract his or her birth date from a specific date. For example, Jacob was born on June 25, 2005. His chronological age should be five-and-half years (or 66 months) on December 25, 2010. Chronological age is frequently used in psychometrics as a standard against which certain variables, such as behavior and intelligence, are measured. Chronological age is also sometimes used to compare an individual with a normative sample of others of the same chronological age. KAI-CHIEN TIEN CIRCLE OF FRIENDS Circle of Friends or Circle of Support (Falvey, Forest, Pearpoint, & Rosenberg, 1997) is a program for children who have difficulties making friends. The object is to make sure the child is included in activities and feels a part of a group. A facilitator is required and could be a parent, counselor, or teacher. A social map is prepared for the child with the child’s help. This map of circles lists the social contacts of the child. See Figure 7 for an example of a social map. In the center of the social map is the child. In the first circle are the people who are the closest to the child such as family (Intimate). In the second circle are friends (Friendship). The third circle represents people who may participate in the child’s life such as doctors, teachers, and counselors (Participation). The fourth circle contains people who may interact with the child in passing such as policemen, firemen, and neighbors (Exchange). Often the Friendship circle has few people. Once it is determined who is in each of the rings a meeting is held for the entire class. The system is explained to the class by one or two classmates who have volunteered to be mapped. This map is drawn on the board. Most classmates will have several friends in the Friendship circle. Then the map is drawn for the child with disabilities. Volunteers are asked to be in the child’s Friendship circle. These children then act as mentors for the child. These 74
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classmates make sure they greet the child, walk to class with him, or be friendly or helpful in other ways. There are weekly meetings (usually 15–20 minutes) in which the mentors talk about what the good things were that happened that week, and then they discuss behaviors that may have caused problems and suggest ways to correct them. The child also participates and tells what he or she liked and didn’t like for that week. The goal is a situation in which everyone learns and friendships develop. This is a program that can be written into a child’s Individualized Education Program.
Figure 7 Circle of Friends
REFERENCE Falvey, M. A., Forest, M., Pearpoint, J. M., & Rosenberg, R. L. (1997). All my life’s a circle: Using the tools, circles, maps, and paths. Ontario: Inclusion Press.
TERRI COOPER SWANSON CLASSROOM READING INVENTORY Classroom Reading Inventory (CRI; Silvaroli, 2000) was designed to be used by teachers of all experience levels to test reading comprehension, word-recognition abilities, inferential and critical reading skills, and thinking abilities. The CRI includes a pretest and a posttest. REFERENCE Silvaroli, N. J. (2000). Classroom Reading Inventory. Dubuque, IA: Brown and Benchmark Publishers.
JEANNE HOLVERSTOTT CLINICAL ASSESSMENT (EDUCATIONAL) Clinical assessments are tests that are administered on an individual basis by a trained professional or specialist. These measures typically assess general intellectual ability, specific cognitive abilities, scholastic aptitude, and oral language development. THERESA L. EARLES-VOLLRATH CLINICAL ASSESSMENT (MEDICAL) Clinical assessment refers to assessment of a medical, psychiatric, or psychological problem by a qualified health professional based on examination/observation, interview, and possibly testing of the individual with the problem (along with family members) in order to arrive at a diagnosis. Clinicians draw on prior knowledge, training, and experience to form a diagnostic impression that may be tentative pending further testing, observation, or trial treatment. Treatment recommendations or a treatment plan are given as part of a clinical assessment. BRUCE BASSITY 75
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CLINICAL EVALUATION OF LANGUAGE FUNDAMENTALS–PRESCHOOL Clinical Evaluation of Language Fundamentals–Preschool (CELF-P; Wiig, Secord, & Semel, 1992) is an individually administered, norm-referenced test developed to identify, diagnose, and use in follow-up evaluation of language and communication disorders in preschool children ages 3 to 6. Administering the CELF-P takes approximately 30–45 minutes. A variety of subtests provide in-depth assessment of a child’s language skills as well as a preliteracy scale and phonological awareness subtest. Additionally, a pragmatics profile helps to describe the child’s language use at school or at home. See also norm-referenced assessment. REFERENCE Wiig, E. H., Secord, W., & Semel, E. (1992). Clinical Evaluation of Language Fundamentals–Preschool. San Antonio, TX: PsychCorp.
JEANNE HOLVERSTOTT CLINICAL OPINION Clinical opinion is established through the evaluation and assessment of an individual and is often required for eligibility requirements for services. Clinical opinion may be established by professionals such as medical or health service providers. TERRI COOPER SWANSON CLINICAL PRACTICE GUIDELINES Clinical practice guidelines are a standardized approach to the diagnosis and treatment of a specific diagnostic entity, which is often developed or adopted by health professional organizations or government agencies. Typically, these guidelines are supported by outcome-based research. These guidelines are modified over time to reflect new findings and improvements. BRUCE BASSITY CLINICAL SIGNIFICANCE Many researchers use statistical significance to determine the efficacy of a research project. Statistical significance relies on the use of statistical tests to determine whether or not the results meet an accepted criterion level. Clinical significance does not rely on statistical tests to determine effectiveness; rather; it relies on the true effects of the intervention on the individual or on any other problem identified as a relevant priority in the field. Clinical significance refers to a judgment about whether the intervention made a real and important difference in the lives of the individuals who participated in the research and/or whether the results will be useful or applicable to the population in general. THERESA L. EARLES-VOLLRATH CLINICAL SOCIAL WORKER A clinical social worker is a licensed practitioner who helps individuals, families, or communities improve or restore their competence in social functioning. Social workers 76
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must understand the dynamic interaction of social, economic, and cultural institutions. They assist people in managing everyday life stresses in addition to helping them overcome more traumatic events. STEVE CHAMBERLAIN CLINICAL TRIAL A clinical trial is a research method used to determine the effectiveness and safety of a new intervention (e.g., drug, device, therapy, or other intervention). A trial typically involves the use of the new intervention with one group of people, while others receive placebo treatment with short- and long-term outcomes monitored. Clinical trials usually include four phases. Phase I trials involve a small number of participants (e.g., 20–80) to assess the safety and side effects of an intervention. Once the initial safety of the therapy has been confirmed in Phase I trials, Phase II trials are performed on larger groups (e.g., 100–300) and are designed to assess clinical efficacy of the therapy as well as to continue Phase I assessments in a larger group of volunteers and patients. Phase III studies are randomized, controlled trials on large patient groups (1,000–3,000 or more) and are aimed at being the definitive assessment of the efficacy of the new intervention, especially in comparison with currently available alternatives. Phase IV trials, which follow Food and Drug Administration approval, involve the post-launch safety surveillance and ongoing technical support of an intervention. JEANNE HOLVERSTOTT CLOSTRIDIUM TETANI Clostridium tetani is the organism that causes tetanus (Mylonakis, 2006). Tetanus is extremely fatal in humans. Mortality rates are from 13 to 52 percent. Because the disease is so fatal, widespread immunizations have taken place in the United States. The tetanus organism is found in infected manure, dirt, clothing, skin, and in 10 to 25 percent of human gastrointestinal tracts (Mylonakis, 2006). Most cases of tetanus result from small puncture wounds or cuts, which become infected with the Clostridium tetani spores. The resulting toxin is what causes the painful spasms, rigidity of voluntary muscles, the ‘‘lockjaw’’ symptom, and eventual death. REFERENCE Mylonakis, E. (July 18, 2006). Tetanus. Retrieved September 22, 2006, from www.emedicine.com.
LYNN DUDEK COGNITIVE BEHAVIOR MODIFICATION Cognitive Behavior Modification (CBM) is a technique that allows an individual with exceptionality to function independently in his or her daily life (Quinn, Swaggart, & Myles, 1994). It has been widely used in a variety of settings with individuals addressing issues of aggression, anxiety, panic disorders, substance abuse, schizophrenia, bipolar disorder, borderline personality, depression, limited self-control, poor social problem solving, and related problems (Kendall, 1993; Larson & Lochman, 2002; Leahy & Beck, 1988; Mayer, Lochman, & Acker, 2005). More recently, this technique has also been applied successfully with individuals with autism who exhibit a range of skills (Quinn, Swaggart, & Myles, 1994). 77
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CBM unites cognitive theory with behavior modification (Mahoney, 1974). In other words, CBM is a combination of cognitive and behavioral learning principles to shape and encourage desired behaviors. To be more specific, Hughes (2000) defined that CBM refers to a diverse assemblage of theoretical and applied orientations that share three underlying assumptions: (a) an individual’s behavior is mediated by cognitive events (i.e., thoughts, images, expectations, and beliefs); (b) a change in mediating events results in a change in behavior; and (c) an individual is an active participant in his or her learning. The third assumption recognizes the reciprocal relationships among an individual’s thoughts, behavior, and his or her environment and views the individual as a positive participant of environmental influence. Mayer, Lochman, and Acker (2005), in a very broad and basic sense, considered the evolution of CBM as occurring in three stages over several decades. Concurrent with the work of early behaviorists, in which explicit and observable behaviors were considered the only acceptable data allowed in research, the early focus was on purely observable stimulus-response (S-R) phenomena. Later on, consideration of mediation processes in a stimulus-response model was seen in the work of Hull and Tolman. Organism-specific variables (O) became important, and the S-R psychology moved toward S-O-R psychology (Mahoney, 1974). A third stage of development assembled thinking, perception, motivation, and cognitive mediation processes, drawn from the research of Bolles, Bower, and Neisser (Kazdin, 1978). Sharpening the historical focus on these developments, Mayer et al. further argued that CBM can be seen as having emerged in the late 1950s, 1960s, and 1970s as a result of the following three factors. First, psychology in the 1970s had ‘‘gone cognitive,’’ with particularly significant developments in modeling, self-instruction, and problem-solving protocols. Next, research in self-control had gone beyond traditional behavior therapy approaches to include a specific cognitive component. Third, the development of the comprehensive cognitive therapeutic procedures was completed and the cognitive-behavioral therapy, being recognized as a field, started to obtain its own right. The strategy of CBM is known by a variety of other names, including self-management, self-monitoring, self-instruction, and metacognition (Quinn et al., 1994). Those names also reflect characteristic components of a CBM procedure identified by Lloyd (1980). CBM is a technique that teaches individuals to monitor their own behavior, pace, or performance, and delivers self-reinforcement at established increments of time. In addition, the strategy is designed to provide specific steps to facilitate appropriate cognitive processing during the completion of a task. Kneedler and Hallahan (1981; as cited in Wahlberg, 1998) stated, ‘‘CBM is not an external structure to manipulate behavior; rather, it concentrates on activating an individual to act as his or her won behavior agents’’ (p. 224). To be more specific, educationally speaking, in CBM, the teacher or supervisor strives for the activation of a student’s cognitive processes in a behavior change system to alter his or her thinking as well as behavior. Thus far, the premise of CBM is that, as a prerequisite to behavior change, individuals must develop their ability to notice (a) how they feel, think and behave and (b) the impact their behavior has on others (Meichenbaum, 1980). The CBM approach emphasizes the modification of thinking as a means of changing feelings and behavior (Corey, 1991; Harris, 1988; Hughes, 1988). An early demonstration of CBM was used by Meichenbaum and Goodman (1971) when they introduced cognitive approaches to behavior modification to a group of 78
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hyperactive children who demonstrated poor self-control (Wahlberg, 1998). Furthermore, Meichenbaum’s work on self-instruction has contributed a foundational element to CBM (Craighead, 1982). Meichenbaum (1977) stated: ‘‘The focus of self-instruction training has been on the child’s conscious self-regulatory ability’’ (p. 103). He proposed that self-instruction would support the development of the following skills: (a) controlling impulsive behavior; (b) attending to important events or cues; (c) focusing on specific goals; (d) coping with stressors; and (e) managing verbal and nonverbal behavior. In self-instruction, the individual is taught to regulate his or her behavior through selftalk. The individual is taught to ask and to answer covertly questions that guide his or her own performance. The questions are of four types: (a) the nature of the problem (What is it I have to do?); (b) plans, or self-instruction for solving the task (How should I do it?); (c) self-monitoring (Am I using my plan?); and (d) self-evaluation (How did I do?). Educationally, self-instruction is essentially students teaching themselves. With the help of teachers or other professionals, students can use ‘‘self-speech’’ to control behaviors. Meichenbaum outlined five steps in his self-instruction model to teach individuals to use self-speech as part of self-instruction. Step 1: Demonstrate by Model As a teacher, speak aloud about the steps you are going through to reach a solution to a problem or situation. For example, if the task is to make a peanut butter sandwich, talk through the steps while making the sandwich. ‘‘What do I need to make a peanut butter sandwich? I need peanut butter, two pieces of bread, and a knife. Okay, now I have to put some peanut butter on one piece of bread and spread it out with my spread knife easily and slowly. The next step is to put another piece of bread on top of it. Finished. I did it!’’ Step 2: Modeling with Overt Adult Guidance The student will begin to independently approach a problem or situation while saying the steps aloud. The teacher is there to help the student with what he or she is doing correctly and incorrectly. Step 3: Modeling with Overt Self-Guidance The student now approaches the problem without the teacher. The student is still saying the steps aloud. Step 4: Modeling with Faded Self-Guidance The only difference between this step and the previous step is that the child is now whispering the steps to himself or herself. Step 5: Modeling with Covert Self-Guidance At this point, the student can now approach the problem independently. The student is still thinking about the steps in his or her head (silent self-guidance).
A large amount of research has been done focusing on CBM in working with children and young adolescents (Walberg, 1998). CBM techniques have been shown to be effective ways to help children and young adolescents deal with a variety of functional difficulties (Kazdin, 1991; Wahlberg, 1998). Quinn et al. (1994) reviewed the literature on CBM for persons with autism from 1989 to 1994 and found that although the research is limited to a small number of investigations, the results are 79
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Table 1. CBM Instructional Sequence for Traditional Autism Steps
What to do?
1. Modeling
The teacher verbalizes aloud what he or she is doing while demonstrating the strategy steps of a task. Following modeling, the teacher puts the student through the process, providing prompts if necessary. This procedure is performed on a daily basis until the student performs the task with minimal prompting. The teacher collects data and monitors the process until the student is able to master the task at the pre-established criteria. After following a signal or visual representation of a step, the student places a chip on a board, places a mark on a self-monitoring sheet, or otherwise records the occurrence of the target behavior. After the picture sequence or after the self-monitoring has been completed, the student self-rewards from a menu of preferred reinforces.
2. Put-through
3. Self-recording
4. Self-rewarding
positive: ‘‘All of the studies reviewed indicated that CBM is an effective strategy for helping to monitor social and vocational skills while teaching independence’’ (p. 2). In addition, it is also an effective strategy to promote academic and vocational skill acquisition by individuals with autism. Quinn et al. further proposed that one solution to the dilemma of attending difficulties exhibited by children with autism spectrum disorders (ASD) is to teach them to maintain a record of on-task behavior through the use of CBM; however, the premise is that children must possess the skills necessary to complete assigned work. Quinn et al. stated, ‘‘This procedure is most appropriate for students who have the skills necessary to independently perform a particular task but are unable to complete it due to attending difficulties’’ (p. 4). In terms of CBM implementation for individuals with autism, Quinn et al. outlined instructional sequences for individuals with traditional autism and individuals with high-functioning autism, respectively. The instructional sequences are delineated in Table 1 and Table 2.
Table 2. CBM Instructional Sequence for Traditional Autism Steps
What to do?
1. Self-monitoring
The student listens to the audio/ape signal; when he or she hears a signal, the student self-question, ‘‘Am I paying attention?’’ The student quickly assesses whether or not she or he was attending. If the student was attending, he or she circle ‘‘yes’’ on the selfmonitoring sheet. If the student was off task, he or she circles ‘‘no’’ on the self-monitoring sheet. The student provides a self-reward for on-task behavior by saying, ‘‘Good job.’’ If the student was off task, he or she will silently prompt himself or herself by saying, ‘‘Get back to work.’’ The student resumes work immediately.
2. Self-recording
3. Self-rewarding
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REFERENCES Corey, F. (1991). Theory and practice of counseling and psychotherapy. Belmont, CA: Brooks/Cole Publishing Company. Craighead, W. E. (1982). A brief clinical history of cognitive-behavioral therapy with children. School Psychology Review, 11, 5–13. Harris, K. R. (1988) Cognitive-behavior modification: Application with exceptional students. In E. L. Meyen, G. A. Vergason, & R. J. Whelan (Eds.), Effective instructional strategies for exceptional children (pp. 253–268). Denver: Love Publishing Company. Hughes, J. N. (2000). Cognitive behavior therapy. In C. R. Reynolds & E. Feltcher-Janzen (Eds.), Encyclopedia of special education: A reference for the education of the handicapped and other exceptional children and adults (pp. 407–409). New York: J. Wiley & Sons. Hughes, J. N. (1988). Cognitive behavior therapy with children in schools. New York: Pergamon Press. Kazdin, A. E. (1978). History of behavior modification: Experimental foundations of contemporary research. Baltimore: University Park Press. Kazdin, A. E. (1991). Effectiveness of psychotherapy with children and adolescents. Journal of Consulting and Clinical Psychology, 89, 785–798. Kendall, P. C. (1993). Cognitive-behavioral therapies with youth: Guiding theory, current status, and emerging developments. Journal of Consulting and Clinical Psychology, 61, 235– 247. Larson, J., & Lochman, J. E. (2002). Helping schoolchildren cope with anger: A cognitive behavior intervention. New York: Guilford Press. Leahy, R. L., & Beck, A. T. (1988). Cognitive therapy of depression and mania. In A. Gorgotas & R. Cancro (Eds.), Depression and mania (pp. 214–267). New York: Elsevier. Lloyd, J. W. (1980). Academic instruction and cognitive behavior modification: The need for attack strategy training. Exceptional Education Quarterly, 1, 53–63. Mahoney, M. J. (1974). Cognition and behavior modification. Cambridge, MA: Ballinger. Mayer, M., Lochman, J., & Acker, R. V. (2005). Introduction to the special issue: Cognitivebehavior interventions with students with EBD. Behavioral Disorders, 30, 197–212. Meichenbaum, D. (1977). Cognitive-behavioral modification: An integrated approach. New York: Plenum. Meichenbaum, D. (1980). Cognitive-behavior modification: A promise yet unfulfilled. Exceptional Education Quarterly, 1, 83–88. Meichenbaum, D., & Godman, J. (1971). Training impulsive children to talk to themselves: A means of developing self-control. Journal of Abnormal Psychology, 77, 115–126. Quinn, C., Swaggart, B. L., & Myles, B. S. (1994). Implementing cognitive behavior management programs for persons with autism. Focus on Autistic Behavior, 9(4), 1–13. Wahlberg, T. (1998). Cognitive-behavioral modification for children and young adolescents with special problems. Advances in Special Education, 11, 223–253.
KAI-CHIEN TIEN
COGNITIVE LEARNING STRATEGIES Cognitive learning strategies are principles or rules that help students solve problems or complete learning activities independently (Friend & Bursuck, 2006) by guiding the ways they acquire, store, retrieve, and use information (Alley & Deshler, 1979; Deshler & Lenz, 1989). In short, cognitive learning strategies teach students how to modify their thinking and problem-solving skills, and how to learn and problem solve effectively (Alley & Deshler, 1979; Bock, 2000, 2005, 2006; Deshler & Schumaker, 1993; Salend, 2005). A cognitive learning strategy consists of a series of specific steps that must be completed in the order specified. An acronym is often used to help students remember the 81
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strategy steps (Bender, 2004). For instance, in the reading comprehension strategy, POSSE (Englert & Mariage, 1991), the acronym POSSE represents the strategy steps as follows: P Predict ideas. O Organize the ideas. S Search for the structure. S Summarize the main idea. E Evaluate your understanding.
Thus, when students use POSSE, they first predict the ideas that will be discussed in the reading passage. They then use a graphic organizer to organize these ideas. Students then search for the structure of the reading assignment. After reading the assignment, students summarize the main idea from the reading. Finally, students evaluate their understanding of the reading assignment. Research investigating cognitive learning strategies has demonstrated that they work very well with students who present strategy production deficiencies due either to developmental immaturity or executive dysfunction (Bender, 2004; Bock, 2000, 2005, 2006; Boudah, Lenz, Bulgren, Schumaker, & Deshler, 2000; Schumaker & Deshler, 1992). This research also supports use of cognitive learning strategies across all subject content areas (e.g., reading comprehension, reading fluency, writing, spelling, mathematics) and many academic activities (e.g., completing multiplechoice tests, taking notes; Bender, 2004; Ellis, Deshler, Lenz, Schumaker, & Clark, 1991). Research has identified eight steps teachers should follow when providing learning strategy instruction (Bender, 2004; Ellis et al., 1991). The strategy instruction steps are as follows: Step Step Step Step Step Step Step Step
1: 2: 3: 4: 5: 6: 7: 8:
Pretest and commitment Describe the strategy Model the strategy Verbal strategy rehearsal Controlled practice and feedback Grade-appropriate practice and feedback Posttest and communication to generalize Generalize the strategy
In Step 1, teachers pretest the students to identify students who do not have effective learning strategies and solicit commitment from these students to participate in learning strategy instruction. In Step 2, teachers describe the learning strategy. In Step 3, teachers model use of the strategy. In doing so, teachers also share their thinking behaviors. This helps students learn how the learning strategy guides the teachers’ thinking. In Step 4, teachers guide students in verbally rehearsing the strategy. In this step, students also begin to memorize the strategy steps and acronym. Teachers then provide practice and feedback using practice materials developed specifically for Step 5. Once students demonstrate mastery of strategy use on the controlled practice materials, teachers provide practice and feedback using grade-appropriate materials. These materials often come directly from current class assignments (e.g., the daily reading assignment). Once 82
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students demonstrate mastery of strategy use Figure 8 Story Graphic Organizer on the grade-appropriate materials, teachers go on to Step 7, posttest and communication to generalize. The posttest evaluates students’ strategy recall and application to grade-appropriate materials. During this instructional step, teachers also discuss the need to generalize this strategy to all class assignments. The final instructional step involves helping the students generalize strategy use to all relevant content areas. This often involves teaching classroom teachers the learning strategy and asking them to remind students to use the strategy when giving assignment instructions. Most students with autism spectrum disorders (ASD) present signs of executive dysfunction (i.e., problems keeping several tasks going at the same time and switching between them, problems making high-level decisions to resolve conflicting responses, problems overriding automatic behavior, and problems inhibiting inappropriate impulsive actions; Ozonoff & Griffith, 2000; Russell, 1997). Executive dysfunction leads to strategy production dysfunction. Cognitive learning strategy instruction is one way to teach these students how to use effective meta-cognitive (or learning) strategies. However, the unique information processing skills of students with ASD (Bock, 2005, 2006; Ozonoff & Griffith, 2000; Russell, 1997) require several strategy modifications: Modification 1: Visual supports Modification 2: Learning strategy story Modification 3: Strategy teaching script
Since many students with ASD are visual learners, strategies should include both acronyms and visual icons representing each strategy step (see Figure 8). A graphic organizer should also be used to clearly delineate each of the strategy steps. Many students with ASD are not able to understand others’ thoughts and actions. Consequently, watching the teacher model strategy use may not be beneficial for them. Instead, teachers should create a learning strategy story that provides a ‘‘thinking model’’ from the student’s perspective that is derived from the lived experience of the student who will learn the strategy. For instance, if a student has difficulties participating in the activity period, the learning strategy story should describe activity period and how to use the strategy to participate in activity period. Finally, teachers should develop a specific teaching script—a specific set of questions and responses teachers will use to teach SODA to students with ASD. The cognitive learning strategy in Table 3 includes a strategy graphic organizer, strategy story, and strategy teaching script. SODA was used to help a student 83
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Table 3. Making Sense of Activity Period (Stop, Observe, Deliberate, Act) Directions: Read the following story silently. When you are finished, raise your hand to let your teacher know you are ready to discuss the story. Sometimes when I go to activity period I get into trouble and am sent to the principal’s office. Ms. Jones, my activity period teacher, tells me that I should stay in the principal’s office until I am ‘‘. . . willing to get along with the other students.’’ This confuses me because I am always willing to get along with the other students. During activity period I talk with all the other students. I talk about NASA, space, and space travel. Sometimes they stop playing their game and ask me a question about space travel. Sometimes they tell me to leave them alone. Sometimes they ask me to go away. I leave when they ask me to leave. I go to another student and talk about space travel. I think I am getting along with the other students during activity period, but then Ms. Jones sends me to the principal’s office. When I go back to activity period, I’m going to use SODA to help me figure this out. When I enter my homeroom for activity period, I will Stop. I will then ask myself, ‘‘Where should I go to observe?’’ (I will sit at my desk to observe.) I will ask myself, ‘‘What is the room arrangement?’’ (I will notice if there is any change in the room arrangement.) Finally, I will ask myself, ‘‘What is the routine?’’ (I will look at the board in the front of the room to see what games or activities Ms. Jones has planned for today.) I will then Observe. While observing I will ask myself, ‘‘What are Ms. Jones and the other students doing?’’ (I will watch Ms. Jones and the other students to see what they are doing. Ms. Jones may be showing us what games we will play today. The students may be deciding who they want to play with and what game they want to play. The students may be reading the game directions.) I will then ask myself, ‘‘What are Ms. Jones and the other students saying?’’ (I will listen to Ms. Jones and the other students to hear what they are saying. Ms. Jones may be asking who wants to play ‘‘Clue.’’ The students may be saying what they want to play. The students may be talking about other things, like the basketball game or their favorite music group.) I will also ask myself, ‘‘What happens when Ms. Jones and the other students say and do these things?’’ (Ms. Jones may smile and thank the students who form groups and begin playing their game right away. The students may smile and laugh as they play their games.) I will then Deliberate about my observations. To help me deliberate, I will ask myself, ‘‘What would I like to do?’’ (I now realize that we go to activity period to play games. I would like to play a game with Joe.) I ask myself, ‘‘What would I like to say?’’ (I now realize that we can visit as we play games. Joe likes to visit about NASA, space, and space travel. I would like to visit with Joe about NASA, space, and space travel as we play a game.) I will ask myself, ‘‘How will Ms. Jones and the other students feel when I do and say these things?’’ (They will feel happy.) I will ask myself, ‘‘How will Ms. Jones and the other students act when I do and say these things?’’ (They will let me join a group and play a game. They will not tell me to leave them alone. I will not be sent to the principal’s office.) And finally, I will ask myself, ‘‘Why will Ms. Jones and the other students act this way?’’ (They want to play games and visit during activity period. They want me to do this, too. That’s why they won’t tell me to go away.) After I’ve completed my deliberations, I will decide how I will Act during activity period. I can now see that when I walk around the room talking to the other students about NASA, space, and space travel during activity period that they cannot play games or visit with each other. This makes them mad. Then they ask me to go away and leave them alone. Then Ms. Jones sends me to the principal’s office. If I play a game and visit about things that interest the other students, they will feel happy and want me to stay and play the game with them. And I won’t be sent to the principal’s office. When I go to activity period I plan to: walk up to Joe and ask what game he wants to play today; tell Joe that I want to play that game too and ask if I can play the game with him; listen to Joe and his friends talk about cars they like during the game;
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COGNITIVE LEARNING STRATEGIES talk about cars I like during the game; talk about how space travel has led to improvement in these cars over recent decades; and help Joe put the game away at the end of the period. Strategy teaching script. Teacher directions: Complete this teaching script immediately after the student has read the strategy story. Bring the SODA graphic organizer and a blank sheet of paper to cover it up. (You will gradually uncover sections of the graphic organizer as directed below.) Teacher: You just read a story about your participation in activity period. What was the name of the strategy that you used to help you figure out what to do during activity period? Student: SODA. Teacher: That’s right! (If the answer was correct.) Now tell me what the letters S, O, D, and A represent. [Teacher uncovers the SODA icons on the left side of the SODA graphic organizer.] OR The strategy was called SODA. (If the answer was incorrect.) Now tell me what the letters S, O, D, and A represent. Student: S represents ‘‘stop.’’ O represents ‘‘observe.’’ D represents ‘‘deliberate.’’ A represents ‘‘act.’’ Teacher: Exactly! [Teacher uncovers the SODA icons on the left side of the SODA graphic organizer.] When you go to homeroom for activity period, you must stop, observe, deliberate, and then act. While stopped, what three questions must you ask yourself? Student: Where should I go to observe? What is the room arrangement? What is the routine or schedule? Teacher: Right again! [Teacher uncovers the ‘‘stop’’ self-questions on the left side of the SODA graphic organizer.] When going to activity period, you must stop and ask yourself: Where should I go to observe? I will sit at my desk to observe. What is the room arrangement? I will notice if there is any change in the room arrangement. What is the routine or schedule? I will look at the board in the front of the room to see what games or activities Ms. Jones has planned for today. OR Correct any questions the student missed. This teaching script follows the same pattern through all four sections of the SODA graphic organizer.
understand how to participate in activity period, lunch, and cooperative learning during English class. The teaching story and script were developed for activity period. Additional stories and teaching scripts were developed for lunch and cooperative learning. Strategy story. Teacher directions: Introduce the student to this activity by saying, ‘‘SODA is a strategy some people use to figure out what to do and say when they are confused. The following short story shows how you can use SODA to figure out what to do and say when you go to activity period. Please read the story silently and raise your hand when you are finished so we can talk about it.’’ REFERENCES Alley, G., & Deshler, D. (1979). Teaching the learning disabled adolescent: Strategies and methods. Denver: Love. Bender, W. (2004). Learning disabilities: Characteristics, identification, and teaching strategies (5th ed.). Boston: Allyn & Bacon.
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COGNITIVE PROCESSES Bock, M. (2000). The impact of social behavioral learning strategy training on the social interaction skills of eight students with Asperger syndrome. Unpublished manuscript, University of North Dakota. Bock, M. (2005). SODA: Learning strategy intervention for a child with Asperger syndrome. Manuscript submitted for publication. Bock, M. (2006). SODA strategy instruction: Demystifying social interactions for students with Asperger syndrome. Manuscript in preparation, University of North Dakota. Boudah, D., Lenz, B., Bulgren, J., Schumaker, J., & Deshler, D. (2000). Don’t water down! Enhance content learning through the unit organizer routine. Teaching Exceptional Children, 32(3), 48–57. Deshler, D., & Lenz, B. (1989). The strategies instructional approach. International Journal of Disability, Development, and Education, 6(3), 203–244. Deshler, D., & Schumaker, J. (1993). Strategy mastery by at-risk students: Not a simple matter. Elementary School Journal, 94, 153–157. Ellis, E., Deshler, D., Lenz, B., Schumaker, J., & Clark, F. (1991). An instructional model for teaching learning strategies. Focus on Exceptional Children, 24(1), 1–14. Englert, C., & Mariage, T. (1991). Making students partners in the comprehension process: Organizing the reading ‘‘POSSE.’’ Learning Disability Quarterly, 14, 123–138. Friend, M., & Bursuck, W. (2006). Including students with special needs: A practical guide for classroom teachers (4th ed.). Boston: Allyn & Bacon. Ozonoff, S., & Griffith, E. (2000). Neuropsychological function and the external validity of Asperger’s syndrome. In A. Klin, F. R. Volkmar, & S. S. Sparrow (Eds.), Asperger’s syndrome (pp. 72–96). New York: Guilford. Russell, J. (Ed.). (1997). Autism as an executive disorder. Oxford: Oxford University Press. Salend, S. (2005). Creating inclusive classrooms: Effective and reflective practices for all students (5th ed.). Upper Saddle River, NJ: Merrill/Prentice Hall. Schumaker, J., & Deshler, D. (1992). Validation of learning strategy interventions for students with learning disabilities: Results of a programmatic research effort. In B. Y. L. Wong (Ed.), Contemporary intervention research in learning disabilities (pp. 22–46). New York: Springer-Verlag.
MARJORIE A. BOCK COGNITIVE PROCESSES The ability to think about a task including intellectual abilities, such as memory and the ability to solve problems and make judgments based on past experiences and the context of the situation. KATHERINE E. COOK COLLABORATIVE TEAM Collaboration is a necessary practice in special education, where education professionals work together to assess and educate students with disability. Collaborative teams can occur through coordination of services, consultation among professionals, and teaming during service provision. KATHERINE E. COOK COMIC STRIP CONVERSATIONS. See Cartooning COMMUNICATION AND SYMBOLIC BEHAVIOR SCALES (CSBS) The Communication and Symbolic Behavior Scales (CSBS; Wetherby & Prizant, 2002) is a norm-referenced, standardized instrument used to assess infants, toddlers, and preschoolers at risk for communication delays and impairments. This assessment is used during natural play routines and other adult-child interactions. The 22 five-point 86
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rating scales survey children’s language skills as well as their symbolic development, which are demonstrated by the children’s gestures, facial expressions, and play behaviors. The CSBS should be administered by a speech-language pathologist, early interventionist, psychologist, or other professional trained to assess developmentally young children. The assessment takes approximately 50–75 minutes to administer with the parents or caregivers completing a Caregiver Questionnaire, which provides background information that serves as a baseline against which to evaluate a child’s performance. The early childhood professional then takes a direct sampling of the child’s communicative behaviors in structured and unstructured play situations in the child’s natural environment. REFERENCE Wetherby, A., & Prizant, B. M. (2002). Communication and Symbolic Behavior Scales. Baltimore: Brookes Publishing Co.
JEANNE HOLVERSTOTT COMMUNICATION AND SYMBOLIC BEHAVIOR SCALES DEVELOPMENTAL PROFILES (CSBS DP) Communication and Symbolic Behavior Scales Developmental Profiles (CSBS DP; Wetherby and Prizant, 2002) is a norm-referenced screening and evaluation tool designed to help determine the communicative competence (use of eye gaze, gestures, sounds, words, understanding, and play) of children with a functional communication age between 6 months and 24 months (chronological age from about 6 months to 6 years). The tool is administered by a certified speech-language pathologist, early interventionist, psychologist, pediatrician, or other professional trained to assess developmentally young children. The CSBS DP may be used as a starting point for Individualized Family Service Plan (IFSP) planning, as an outcome measure to help determine the efficacy of intervention, and as a guide to indicate areas that need further assessment. The CSBS DP contains three components. The Infant-Toddler Checklist, for use with children from 6 to 24 months of age, can be used independently or with the other components of the CSBS DP. It is the first step in routine screening to decide if a developmental evaluation is needed. A parent or a primary caregiver who nurtures the child on a daily basis can complete the Checklist’s 24 multiple-choice questions in approximately 5 to 10 minutes. Clinicians may also present the questions in an interview format. If the scores resulting from the Checklist indicate concern, the child is further evaluated with the Caregiver Questionnaire and a Behavior Sample of the child interacting with the clinician and caregiver is taken. REFERENCE Wetherby, A. M., & Prizant, B. M. (2002). Communication and Symbolic Behavior Scales Developmental Profile. Baltimore: Brookes Publishing Co.
JEANNE HOLVERSTOTT COMMUNICATION BOARD A communication board is an assistive technology device and a visual strategy that promotes expressive communication. Depending upon the individual’s need the 87
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communication board may use letters, words, commonly needed phrases, line drawings, or photographs. A communication board is typically used with individuals with limited verbal ability. This may mean that the individual does not have the ability to verbalize or may have difficulty finding the right words when in stressful situations. For the young child a communication board may be used so that they can make simple requests such as asking for their favorite toy or letting their teacher know their need to go to the bathroom. For the adult with Asperger syndrome or high-functioning autism who drives a car, they may have difficulty expressing themselves if they were to get pulled over by the police. To assist with their communication they could have a communication board in their car that included information related to their disability, who they are, and where they live. Communication boards can be simple to complex and take a variety of forms. They can be used in any setting, with any aged person and with a variety of abilities. They are designed to help the individual be successful in getting their wants, needs, and ideas across. See also augmentative and alternative communication. TERRI COOPER SWANSON CO-MORBID/CO-OCCURRING Co-morbidity refers to the existence of one (or more) disorders occurring simultaneously with a primary disorder. JEANNE HOLVERSTOTT
COMPREHENSIVE ASSESSMENT OF SPOKEN LANGUAGE The Comprehensive Assessment of Spoken Language (CASL; Carrow-Woolfolk, 1999) is an individually and orally administered, oral language assessment battery for ages 3 through 21. The CASL takes approximately 30–45 minutes to administer the 15 tests that measure language processing skills (comprehension, expression, and retrieval) in four language structure categories: lexical/semantic, syntactic, supralinguistic, and pragmatic. One benefit to the CASL is that the need for reading and writing is replaced by verbal or nonverbal (pointing) responses. Therefore, the CASL battery is ideal for measuring delayed language, oral language disorders, dyslexia, and aphasia. REFERENCE Carrow-Woolfolk, E. (1999). Comprehensive Assessment of Spoken Language. Circle Pines, MN: American Guidance Services.
JEANNE HOLVERSTOTT COMPREHENSIVE AUTISM PROGRAM PLANNING SYSTEM (CAPS) The Comprehensive Autism Program Planning System (CAPS; Henry & Myles, 2007) is a process approach that is focused on designing and implementing a comprehensive intervention program specifically for individuals with autism spectrum disorders. This process is designed to promote the acquisition of core content, whether it is educational, vocational, or community based, and facilitate the individualized planning of interventions to meet the social, communication, sensory, and educational needs of 88
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Targeted skill short-term objective Specially Designed Data collection Communication / Sensory Strategies Instruction forms Social Skills
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Child/Student:__________________________ Program Manager:_______________________ Date:_____________
Figure 9 Comprehensive Autism Planning System (CAPS)
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persons with ASD. A team of individuals, including parents, general and special education staff, support services (i.e., speech language pathologists, occupational therapists, physical therapists), and administration (i.e., local and regional), complete the CAPS planning matrix for an individual’s ‘‘typical’’ day at school, home, or the workplace. This process begins with informal information gathering about factors directly related to the individual’s program success, such as issues related to motivation, communication, sensory issues, and generalization (see Figure 9). These components inform the completion of the planning matrix, which can include the following categories: time, activity, target skill/short-term objective, specially designed instruction (materials need to aid instruction, i.e., a visual schedule), data collection, instructional materials, social and communication skills, sensory issues, and generalization. This individualized team planning approach aims to create consistency across time and setting, share information with interested parties, and organize an individual’s program with many methodologies that target the core challenges faced by individuals with autism spectrum disorders. REFERENCE Henry, S., & Myles, B. (2007). Comprehensive autism planning system. Shawnee Mission, KS: Autism Asperger Publishing Company.
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COMPUTED AXIAL TOMOGRAPHY. See CAT Scan COMPUTED TOMOGRAPHY. See CAT Scan CONCEPT FORMATION TEST FROM HALSTEAD-REITAN BATTERY. See Halstead-Reitan Neuropsychological Test Battery CONCRETE LANGUAGE Concrete language is characterized by using specific and observable terminology to describe a person, place, or thing. Specific words are chosen and used that make the communicative message visual, versus abstract language that utilizes vague and general vocabulary where the listener is responsible for their own interpretation of the message. KATHERINE E. COOK CONCURRENT VALIDITY Concurrent validity refers to a parameter demonstrated when a test correlates positively with a previously validated measure. The two measures may be for the same construct, or for different, but presumably related constructs. JEANNE HOLVERSTOTT
CONFIDENTIALITY Confidentiality is the act of ensuring that information is accessible only to authorized individuals. According to the procedural safeguards created by the Individuals with 90
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Disabilities Education Act (IDEA), there is a ‘‘right to confidentiality of personally identifiable information, including the right of parents to written notice of and written consent to the exchange of such information’’ [20 U.S.C. § 1439(639)]. In addition to IDEA, two other major pieces of legislation regulate third-party access to educational and medical records: the Family Educational Rights and Privacy Act (FERPA, 1975) and the Health Insurance Portability and Accountability act (HIPPA, 1996). REFERENCES Family Educational Rights and Privacy Act (FERPA) 20 U.S.C. § 1232 et seq. Health Insurance Portability and Accountability Act (HIPPA). Individuals with Disabilities Education Act (IDEA), 20 U.S.C. § 1401 et seq.
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CONSENT Consent is the act of giving written permission by an individual who is fully informed on information relevant to the proposed activity. According to the Individuals with Disabilities Education Act (IDEA), written parental consent is required prior to the following: initial evaluation, placement of students in special education, change of placement, and release of records (IDEA, 20 U.S.C. § 1414(a) (1) (D)). Consent must be given voluntarily by parents who have sufficient information and who have the capacity to give consent. In addition, consent can be revoked at any time while the activity for which consent was given occurs. REFERENCE Individuals with Disabilities Education Act (IDEA), 20 U.S.C. § 1414(a) (1) (D).
FURTHER INFORMATION Yell, M. L. (2006). The law and special education (2nd ed). Upper Saddle River, NJ: Prentice Hall.
THERESA L. EARLES-VOLLRATH CONSEQUENCE A consequence is what happens immediately after a behavior or response. A consequence may be intentional, unintentional, positive, or negative. Regardless, the consequence shapes the behavior that precedes it. For example, a student who disrupts math class and is consequently sent from the room may be escaping math class. In this case, the consequence is exactly what the student desires and only serves to strengthen the behavior, disrupting class. Therefore, it is important to be aware of the function of behavior before assigning a consequence. KATIE BASSITY CONSTIPATION Constipation is a condition in which the passage of stool decreases in frequency and/or stools become hard, dry, and difficult to pass. Numerous factors can contribute including diet, lack of appropriate schedule, psychological problems, intestinal obstruction, and medications. There is a wide variety on ‘‘normal’’ frequency of bowel movement, ranging from 2–3 times a day to 1–2 times per week. BRUCE BASSITY 91
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CONTINGENCY A contingency is the relationship between a behavior and its associated consequences. A contingency exists when an event is consistently presented, removed, or withheld following the occurrence of a specific behavior. Contingencies can occur naturally (Ferster, 1965), or they can be contrived (e.g., when a piece of food is given for an appropriate response). REFERENCE Ferster, C. B. (1965). Arbitrary and natural reinforcement. Psychological Record, 17, 341–347.
JEANNE HOLVERSTOTT CONTINGENCY CONTRACTING A contingency contract is an agreement between two individuals, usually a student and teacher or other adult. Also known as a behavior contract, it is usually written out and explicitly names a desired behavior that the student commits to in return for explicitly named reinforcement that the teacher or other adult will provide when the desired behavior occurs. A contingency contract is generally put in place to encourage a positive behavior in place of an existing undesired behavior. KATIE BASSITY CONTROL GROUP/CONTROL CONDITION The control group (also called control condition or comparison group) is used to compare the different groups in an experimental research study. For example, in an investigation of a reading intervention, one group of children would receive the intervention that is being studied while the control group would not receive the intervention and would either receive an alternate treatment or no treatment at all. The purpose of the control group is to increase the strength by which researchers can claim that the intervention (the independent variable) caused the changes in subject behavior and that other factors were not involved. FURTHER INFORMATION Everitt, B. S. (2002). The Cambridge dictionary of statistics (2nd ed.). Cambridge: Cambridge University Press. Salkind, N. J. (2005). Exploring research (6th ed.). Upper Saddle River, NJ: Prentice Hall.
PAUL G. LACAVA CORRECTIONAL FACILITY A court appointed facility for juvenile offenders where education services are provided for an established time period set by the juvenile court system. Educational services are continued if the student had an Individualized Education Program (IEP) at the time of entrance into the juvenile system. KATHERINE E. COOK CRITERION-REFERENCED ASSESSMENT A criterion-referenced assessment measures a student’s mastery of specific content or skills. These assessments provide information regarding what a student knows related to a standard or criteria; in contrast, norm-referenced assessments measure how much one knows. 92
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FURTHER INFORMATION Pierangelo, R., & Giuliani, G. (1998). Special educator’s complete guide to 109 diagnostic tests: How to select and interpret tests, use results in IEPs, and remediate specific difficulties. West Nyack, NY: Center for Applied Research in Education. Taylor, R. L. (2006). Assessment of exceptional students: Educational and psychological procedures (7th ed.). Needham Heights, MA: Allyn and Bacon.
THERESA L. EARLES-VOLLRATH CT SCAN. See CAT Scan CURRICULUM Curriculum is the subject matter that is to be taught by the teacher and mastered by the student. Curriculum is usually described in terms of its scope and sequence. One might examine the curriculum of a special school, for example, to determine whether it matches the Individualized Education Program of a student who had been recommended to receive services there. KATHERINE E. COOK CURRICULUM-BASED ASSESSMENT Curriculum-Based Assessment (CBA) is an ongoing, alternative method of assessing student performance that compares the student’s abilities with the curricular sequence he will be taught or the content that has been taught. An advantage of this assessment method is that the results relate directly to instructional objectives and materials. FURTHER INFORMATION Scheuermann, B. & Webber, J. (2002). Autism: Teaching does make a difference. Belmont, CA: Wadsworth/Thomson Learning.
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D DAILY LIVING SKILLS Daily living skills are those behaviors that are required for independence in the current environment and in adult life. Depending on age and ability level, daily living skills may include knowledge to: (a) purchase foods and prepare meals, (b) manage personal finances (counting money, making change, and using banking services independently), (c) care for personal and home needs (bathing independently, doing laundry, and cleaning the house), (d) navigate the community using various means of transportation (knowing where one lives, being able to make short trips, and using public transportation or driving a car), (e) understand health and safety issues (knowing who to contact in an emergency), (f) social interaction skills (interpersonal skills, self confidence, self-advocacy, communicating with others appropriately), and (g) decision making/problem solving. For many students identified with ASD, these skills may be included in school learning in order to ensure the individual achieves the greatest self-reliance and independence in adult life. FURTHER INFORMATION Brolin, D. (1997). Life centered career education: A competency based approach (4th ed.). Reston, VA: Council for Exceptional Children.
ANDREA M. BABKIE DANCE THERAPY Dance, or movement therapy, is the therapeutic use of movement and dance as a method to treat emotional, cognitive, social, and physical disorders (ADTA, 2006). Dance/movement therapy can be a tool for stress management, the prevention of physical and mental health problems, easing chronic pain, and enhancing the circulatory and respiratory systems. It can also benefit those with diagnoses including learning disabilities, visual or hearing impairments, or mental handicaps. This type of therapy promotes improvement by creating bonds between clients, decreasing muscular tension, trusting personal impulses, and encouraging self-expression. In addition, this movement is physical and provides the benefits of exercise and improved health. One of the guiding ideas behind dance therapy is the connection between the mind and body and how this connection influences a person’s well-being and mental functioning.
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The designation of Dance Therapy Registered (DTR) is for individuals who are at the entry level, have a master’s degree, and completed 700 hours of a supervised clinical internship. The Academy of Dance Therapists Registered (ADTR) is an advanced designation and is reserved for those individuals who have completed 3,640 hours of supervised clinical work as well as other supervision requirements by a dance therapist who has received the Academy of Dance Therapists Registered designation. Dance/movement therapists can work with clients on an individual basis or in a group setting in general hospitals, psychiatric hospitals, developmental centers, mental health centers, schools, and rehabilitation centers. Referrals and/or recommendations may come from a primary care physician regardless of whether the dance/movement therapist is an independent provider or part of a treatment team. REFERENCE American Dance Therapy Association 2006. (n.d.). Who we are. Retrieved September 20, 2006, from www.adta.com.
LYNN DUDEK DAS-NAGLIERI COGNITIVE ASSESSMENT SYSTEM (CAS) Das-Naglieri Cognitive Assessment System (Naglieri, 1999) is a norm-referenced measure of intelligence based on the PASS theory of cognitive processing. PASS consists of four cognitive components (planning, attention, simultaneous, and successive processes) that form a complex and interdependent system. Planning refers to a set of decisions or strategies an individual adopts and modifies to solve a problem and to reach a goal. Planning tasks in the CAS require an individual to develop some approach of solving the task in an efficient and effective manner. Attention implies that the individual is alert. Alertness can be sustained for a period of time and is selective. Arousal, or alertness, is a prerequisite for learning and memory. Attention tasks in the CAS require the individual to selectively attend to one and ignore the other aspect of a two-dimensional stimulus. Simultaneous processing refers to the person’s facility in relating and integrating discrete pieces of information. Simultaneous tasks in the CAS require the individual to interrelate the component parts of a particular item to arrive at the correct answer. The relationship between all the component parts must be incorporated into some complete pattern or idea. Successive processing refers to the person’s ability to keep things in a particular order. Successive tasks in the CAS require the individual to either reproduce a particular sequence of events or answer some questions that require correct interpretation of the linearity of events. The CAS is appropriate for use with individuals between the ages of 5 and 18. REFERENCE Naglieri, J. (1999). Essentials of CAS Assessment (Essentials of Psychological Assessment Series). New York: Wiley.
JEANNE HOLVERSTOTT DATA Data is a large class of practically important statements collected from each subject or the variables through measurements or observations. Those statements may comprise numbers, words, or images. Data on its own has no meaning. It only takes on 96
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meaning and becomes information when interpreted by some kind of data processing system. People or computers can find patterns in data to perceive information, and information can be used to enhance knowledge. KAI-CHIEN TIEN DEEP PRESSURE PROPRIOCEPTION TOUCH TECHNIQUE Deep pressure proprioception touch technique is a method of intervention that provides sensory information to the joints and larger muscle groups in the body through firm touch and pressure. This information helps the individual organize his body and movements into more purposeful, adaptive responses. KELLY M. PRESTIA DEMENTIA INFANTALIS. See Childhood Disintegrative Disorder DESENSITIZATION Desensitization is a method to reduce or eliminate an individual’s negative reaction to a substance or stimulus. In pharmacology, desensitization is the loss of responsiveness to the continuing or increasing dose of a drug. In psychology, desensitization (or graduated exposure therapy) is a process for mitigating the harmful effects of phobias or other disorders. It also occurs when an emotional response is repeatedly evoked in situations in which the action tendency that is associated with the emotion proves irrelevant or unnecessary. A common application of desensitization is the pairing of an aversive stimulus with a reinforcing stimulus with gradual, increased exposure to what is aversive. For example, an individual who fears snakes would begin by looking at a snake from afar and gradually working to hold the snake. JEANNE HOLVERSTOTT DESIRED BEHAVIOR. See Target Behavior DETOXIFICATION Detoxification is a practice that purportedly removes toxins from the body in order to improve functioning and/or reduce symptoms related to the presence of toxins (heavy metals, poisons). Detoxification is not currently supported by empirical research. See also chelation; heavy metals; vaccinations. JEANNE HOLVERSTOTT DEVELOPMENTAL AGE Developmental age is an index of development stated as the age of an individual and determined by specified standardized measurements such as motor and mental tests and body measurement. It is a measure of a child’s development or maturation in different domains expressed in terms of age norm. In other words, developmental age is the physical, neurological, social, emotional, and intellectual growth changes that have occurred within a particular child. Those growth changes are unique to the child and make the child different from every other child. All children mature at slightly 97
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different rates. A child’s developmental age may or may not correspond with his or her chronological age. KAI-CHIEN TIEN DEVELOPMENTAL DELAY As defined by the Division of Early Childhood (DEC) in 1991, ‘‘developmental delay is a condition which presents a significant delay in the process of development. It does not refer to a condition in which a child is slightly or momentarily lagging in development.’’ Without early or special interventions it is likely that educational performance at school age will be affected. Developmental delay can be diagnosed by the child’s pediatrician through a series of tests or checklists. REFERENCE Division of Early Childhood. (1991). Retrieved October 17, 2006, from http://www.decsped.org/pdf/positionpapers/PositionStatement_DevDelay.pdf.
JAN L. KLEIN DEVELOPMENTAL DISORDER Developmental disorder is the term used to describe a diagnostic grouping of conditions seen from childhood and into adulthood. These include speech and language delay, reading delay, autism spectrum disorders, generalized learning disabilities, enuresis, and encopresis. They are a heterogeneous group that are characterized by abnormality or delay in the development of functions and abilities that normally are seen during childhood development or maturation. Disorders such as autism spectrum disorders (also known diagnostically as pervasive developmental disorders) are considered primarily as neurodevelopmental disorders with neurological or genetic factors influencing the cause, presentation, and progress of the disorder. Other disorders that are usually grouped elsewhere are conduct disorder, oppositional-defiant disorder, and hyperactivity (grouped as disruptive behavior disorders), and anxiety disorders, phobias, depression, obsessive-compulsive disorder, and somatization (grouped as emotional disorders). However, the division between these groupings is somewhat spurious and due more to convenience than to any defined difference between the developmental status of the conditions. Indeed, all of the disorders reported in disruptive behaviors and emotional disorders can be seen in children and present during development, so are often also referred to as developmental. In addition, there are other disorders seen in childhood that do not fit neatly into the aforementioned groupings: Tourette’s syndrome, anorexia nervosa, early onset schizophrenia, attachment disorders, and so on. Thus developmental disorders do not cover the whole range of childhood psychiatric or mental health difficulties that are seen (Goodman & Scott, 2005, pp. 27–28). In terms of the pervasive developmental disorders, those developmental disorders that incorporate autism, these are currently listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR: APA, 2000) to include the following: Autistic disorder, Asperger’s disorder, Pervasive Developmental Disorder–Not Otherwise Specified, Rett’s disorder, and Childhood Disintegrative Disorder. The latter two conditions are different than the former three in that they are thought to be of 98
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different origin or etiology to autism disorders, but are included under the general term of pervasive developmental disorders due to the similarity in features, the desire to differentiate between similar presentations, and the fact that the difficulties seen are pervasive. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Goodman, R., & Scott, S. (2005). Child psychiatry (2nd ed.). Oxford: Blackwell Publishing.
FIONA J. SCOTT DEVELOPMENTAL INDIVIDUAL-DIFFERENCE RELATION-BASED INTERVENTION (DIR) Developed by Stanley Greenspan and Serena Wieder, developmental individual difference relation-based intervention (DIR) is often referred to as floor time; however, the floor time component is only part of the approach. DIR is a framework for assessment and intervention for children with challenges related to social relatedness and communication. The general approach of the DIR model is to assist children in developing logical understanding of the world around them through a variety of interventions including floor time. OVERVIEW OF THE DIR MODEL Greenspan and Wieder believe that teaching children through the DIR model enables them to become independent thinkers. This is done through using emotional and motivating experiences to help the child master the building blocks of social skills, language, independence, learning specific concepts, and academics. DIR focuses on several components as part of the intervention program. These include: (a) home programming, (b) school programming, (c) specific therapies, (d) biomedical interventions, and (e) family support. Additionally, according to Greenspan, home and school programs should consist of the three following learning experiences: (a) floor time sessions, (b) semi-structured problem-solving interactions, and (c) sensorimotor activities. These activities are incorporated in the development of the child’s milestones. Within the DIR model, autism is considered as a form of developmental delay (Greenspan & Wieder, 1998, 2003). For example, failure to attain the capabilities of joint attention (Reed, 2002) and social reciprocity (Conners & Multi-Health Systems Staff, 1995; Goldstein, Johnson, & Minshew, 2001; Heaton, Chelune, Talley, Kay, & Curtis, 1993; Korkman, Kirk, & Kemp, 1998; Minshew & Goldstein, 2001) are consistent across autism and pervasive developmental disorders. Other missed milestones in functional language and early motor capacities, along with planning, sequencing, and symbolic functioning required for pretend-play also indicate possible autism or a related condition (Greenspan & Wieder, 2003). Finally, modulation of sensory input is also highly correlated with autism and other pervasive developmental delays (Kientz & Dunn, 1997; Stone & Lemanek, 1990). As with physical development, charting the social, emotional, cognitive, language, and motor skills according to typical developmental landmarks helps determine and address the developmental delays associated with pervasive developmental delays such as autism (Greenspan & Wieder, 2003). 99
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Greenspan and Wieder (1998) identify six developmental milestones children with autism need to master in order to develop the necessary skills of communication, thinking, and coping with the world on a cognitive-emotional level. Due to the developmental nature of the stages, each milestone must be mastered before attempting to reach the next level. SIX DEVELOPMENTAL MILESTONES Milestone 1: Self-Regulation and Interest in the World Success in this stage means the child is able to use his five outer (sight, touch, taste, smell, and hearing) and two inner (vestibular and proprioception) senses to gather information from the environment while self-regulating the strength and quality of the input for successful interaction with the environment. For some children, failure to master this stage demonstrates itself in becoming overwhelmed with sensory input resulting in irritable behavior or shutting down. Other children, due to lack of perceptible data from the environment, will take little interest in their environment and seem detached. Milestone 2: Intimacy Success in this stage means the child demonstrates interest in interacting in a warm, joyful, and loving manner with their peers as well as others. Failure to master this level of development—likely due to sensory processing difficulties—results in the environment becoming confusing, scary, or painful. Many children who experience difficulties at this stage prefer the company of older people because adults are more able to scaffold conversations and other interactions with them. Milestone 3: Two-Way Communication The initiation of interaction is considered as opening the circle of communication, whereas the response to another person’s intent to interact is considered as closing the circle of communication. Success in this stage presents a child who feels secure in his interactions with others as a prerequisite for understanding that his communicative intent affects others’ reactions and that he has an impact on the world. Two-way communication occurs with single gestures to initiate (open) and to respond to (close) circles of communication (Greenspan & Wieder, 1998). Failure to master this level of development results in a child that can be hard to engage, seems oblivious to the environment, or perhaps watches from the sidelines appearing that they would like to get involved. Difficulty in reading nonverbal and pragmatic information impinges on successful two-way communication, necessitating outside help in facilitating interaction and taking initiative. Milestone 4: Complex Communication The child who successfully navigates this level has mastered the basics of two-way communication and developed a vocabulary for expressing wishes. This child now conceptualizes behavioral sequences that he or she can use to convey wishes and intentions as well as reading them in others. Failure to reach and work through this developmental phase stems from issues of sensory integration leading to difficulties in motor planning, logical thought, and reading the behavior of others without direct (often intensive) instruction. As the complexity of two-way communication increases, the child becomes more overwhelmed and confused, resulting in defensive, irritable, or isolationist behaviors. 100
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Milestone 5: Emotional Ideas—‘‘The Ability to Create Ideas’’ The child begins to engage in appropriate representational play at this stage (Greenspan & Wieder, 1998; Miller & Eller-Miller, 1989; 2000). The child now uses toy cars for pretend races, travel, accidents, and repairs rather than turning it upside down to spin the wheels. A baby doll will be fed and told ‘‘night night’’ when it is time to sleep. The child also begins to narrate these activities, and words now have meaning rather than being just symbols of objects, events, people, and ideas. The child can use words to explain thoughts and feelings, and to create stories. Emotional islands of expression are formed around these activities. The child who is unable to master this milestone continues to have difficulties with intimate and two-way communication. While he or she often shows an interest in toys and can keep calm, however, communication occurs only when motivated. He or she may use one-word requests for wants and needs but will rarely use items for representative play or create a story. Milestone 6: Emotional Thinking A child who is at stage six is able to connect the islands of emotional expression and sequence several representative pretend-play events. For example, instead of playing with the toy cars and doll as explained previously as separate events, the two activities are now connected. For example, after the doll goes to sleep, mommy and daddy doll may bring her into the car for a drive to the ice cream store or a friend’s house where the baby doll may wake up to play with friends or to eat. The child develops a greater understanding of self, how his or her actions affect another person, and vice versa. For example, the child can now say, ‘‘I am happy that you gave me cookies and milk,’’ and can interact on higher levels of emotionality as verbal and spatial skills increase. The child who is unable to reach this stage remains unable to link the emotional islands described earlier. The previous emotional milestones seem to have been achieved at times but often fall apart under stress and result in being unable to close circles of communication. According to Greenspan and Wieder (1998), mastering these developmental milestones gives the child a foundation of ‘‘critical basic tools for communicating, thinking, and emotional coping’’ (p. 89) and decreases the negative impact the autism spectrum disorder has for the person’s development. Stress is placed on the child mastering each developmental level before attempting to complete the next level as opposed to chronological age as a consideration. REFERENCES Conners, C. K., & Multi-Health Systems Staff. (1995). Conners continuous performance test. Toronto: MHS. Goldstein, G., Johnson, C. R., & Minshew, N. J. (2001). Attentional processes in autism. Journal of Autism & Developmental Disorders, 31(4):433–440. Greenspan, S., & Wieder, S. (1998). The child with special needs: Encouraging intellectual and emotional growth. Reading, MA: Addison Wesley. Greenspan, S., & Wieder, S. (2003). Assessment and early identification. In E. Hollander (Ed.), Autism spectrum disorders (pp. 57–86). New York: Marcel Dekker, Inc. Heaton, R. K., Chelune, G. J., Talley, J. L., Kay, G. G., & Curtis, G. (1993). Wisconsin card sorting test (WCST) manual revised and expanded. Odessa, FL: Psychological Assessment Resources.
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DEVELOPMENTALLY APPROPRIATE PRACTICE Kientz, M. A., & Dunn, W. (1997). A comparison of the performance of children with and without autism on the Sensory Profile. American Journal of Occupational Therapy, 51, 530– 537. Korkman, A. S., Kirk, U., & Kemp, S. (1998). A developmental neuropsychological assessment. San Antonio, TX: The Psychological Corporation. Miller, A., & Eller-Miller, E. (1989). From ritual to repertoire: A cognitive-developmental systems approach with behavior-disordered children. New York: Wiley-Interscience. Miller, A., & Eller-Miller, E. (2000 November). The Miller method: A cognitive-developmental systems approach for children with body organization, social and communication issues. In S. Greenspan & S. Wieder (Eds.), ICDL clinical practices guidelines: Revising the standards of practice for infants, toddlers and children with developmental challenges (pp. 489–516). Bethesda, MD: The Interdisciplinary Council on Developmental and Learning Disorders. Minshew, N. J., & Goldstein, G. (2001). The pattern of intact and impaired memory functions in autism. Journal of Child Psychology and Psychiatry, 42, 1095–1101. Reed, T. (2002). Visual perspective taking as a measure of working memory in participants with autism. Journal of Developmental and Physical Disabilities, 14(1), 63–76. Stone, W. L., & Lemanek, K. L. (1990). Parental report of social behaviors in autistic preschoolers. Journal of Autism and Developmental Disorders, 20, 513–522.
FURTHER INFORMATION American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th. ed., text rev.). Washington, DC: Author. Gutstein, S. (2000). Autism Aspergers: Solving the relationship puzzle: A new developmental program that opens the door to lifelong social & emotional growth. Arlington, TX: Future Horizons. Gutstein, S. (2003). Can my baby learn to dance? In L. Willey (Ed.), Asperger syndrome in adolescence: The ups, downs, and inbetweens (pp. 98–128). London: Jessica Kingsley Publishers. Spence, S. J. & Geschwind, D. H. (2003). Autism screening and neurodevelopmental assessment. In E. Hollander (Ed.), Autism spectrum disorders (pp. 39–56). New York: Marcel Dekker, Inc.
STEPHEN SHORE DEVELOPMENTALLY APPROPRIATE PRACTICE Professionals who adhere to developmental models such as those based on Piaget’s theories often refer to their philosophy as developmentally appropriate practice (DAP). This practice is based on knowledge about what is typically expected of and experienced by children of different ages and developmental stages. As Katz (1995) states, ‘‘what should be learned and how it would best be learned depend on what we know of the learner’s developmental status and our understanding of the relationships between early experience and subsequent developments’’ (p. 109). The philosophy and the guidelines for DAP are described in widely disseminated materials published by the National Association for the Education of Young Children (NAEYC; Bredekamp, 1987; Bredekamp & Copple, 1997). REFERENCES Bredekamp, S. (1987). Developmentally appropriate practice in early childhood programs serving children from birth through age 8. Washington, DC: National Association for the Education of Young Children. Bredekamp, S., & Copple, C. (1997). Developmentally appropriate practice in early childhood programs. Washington, DC: National Association for the Education of Young Children. Katz, L. (1995). Talk with teachers of young children: A collection. Norwood, NJ: Ablex.
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DEVELOPMENTAL MILESTONES Developmental milestones are a set of functional skills that most children can do at a certain age range as defined by the American Academy of Pediatrics. These milestones are used by qualified professionals to check developmental progress. These milestones can be broken down into the following areas: (a) motor skills; (b) sensory and thinking skills; and (c) language and social skills. During the first year, the milestones are usually assessed at 3, 6, and 12 months. Although each milestone has a corresponding age level, the actual age when a normally developing child reaches that milestone can vary. REFERENCE American Academy of Pediatrics. (n.d.). Retrieved October 17, 2006, from http://www.aap.org/ healthtopics/stages.cfm.
JAN L. KLEIN DEVELOPMENTAL PLAY ASSESSMENT INSTRUMENT (DPA) The Developmental Play Assessment Instrument (DPA; Lifter, Sulzer-Azaroff, Anderson, & Cowdery, 1993) is designed as a curriculum-based assessment of children’s play activities, providing an evaluation of the quality of a child’s toy play skills in relation to those of typically developing children. Play activities have been identified as critical to the development of language, motor skills, and social interaction in children with developmental disabilities. The DPA identifies a child’s current level of performance in the play curriculum and then determines the steps necessary for that child to acquire more developmentally challenging play activities. REFERENCE Lifter, K. Sulzer-Azaroff, B., Anderson, S., & Cowdery, G. (1993). Teaching play activities to preschool children with disabilities: The importance of developmental considerations. Journal of Early Intervention, 17(2), 139–159.
JEANNE HOLVERSTOTT DEVELOPMENTAL QUOTIENT Used to express a developmental delay, the adaptive Developmental Quotient (DQ) is a ratio of the developmental (functional) age to the chronological age and is expressed as a percentile. The overall developmental score relates to performance in four domains: motor skills (e.g., balancing, sitting); language use; adaptive behavior (e.g., alertness, exploration); and personal-social skills (e.g., feeding, dressing). DQ can be calculated on the basis of standardized developmental tests suitable for young children, but DQ is also used for estimates of mental age based on the impressions of professionals (e.g., child psychologists, pediatricians, and teachers) as well as parents or other family members. See also standardization tests. JAN L. KLEIN DEVELOPMENTAL SURVEILLANCE Developmental surveillance is a flexible, continuous process whereby knowledgeable professionals perform skilled observations of children during the provision of health care. The components of developmental surveillance include: (a) eliciting and 103
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attending to parental concerns, (b) obtaining a relevant developmental history, (c) making accurate and informative observations of children, and (d) sharing opinions and concerns with other relevant professionals. Pediatricians often use age-appropriate developmental checklists to record milestones during preventive care visits as part of developmental surveillance. JAN L. KLEIN
DEVELOPMENTAL THERAPY Developmental therapy (DT) is a program designed to enhance social functioning during interactions between people. Misunderstandings of social situations may lead to withdrawal, aggression, and lower self-esteem, especially in students with an autism spectrum disorder. This structured teaching program can be used for students from birth to age 16, with various disabilities. Developmental therapy matches teaching strategies to a student’s needs, helps create an understanding of uneven or splinter skills, assists in revising program strategies, and then evaluates the progress. Developmental therapy consists of five stages; each stage consists of four components. The components that DT addresses are: behavior, communication, socialization, and academics. The stages included in the program are as follows: ¥ ¥ ¥ ¥ ¥
Stage Stage Stage Stage Stage
1: 2: 3: 4: 5:
Responding to the environment with pleasure Responding to the environment with success Successful group participation Investing in group process, with concern for others Using individual and group skills in new situations
Students in stage one may be impulsive, display no problem solving skills, have tantrums, aggressions, and/or display self-injurious behaviors when problems occur. This lack of ability to handle problems may be attached to anxiety, stemming from feelings of abandonment, helplessness, deprivation, and uncertainty. The four components address several milestones during each stage—behavior, communication, socialization, and academics—used in developmental therapy. Behavioral milestones in stage one include indicating awareness of sensory stimuli, responding to stimuli, independently responding to play materials, spontaneously moving from area to area, and indicating recall of routine without assistance. In the area of communication, stage one’s main goal is for the students to use words to gain their needs. Milestones in the communication component include producing sounds, attending to the person speaking, responding to a verbal stimuli with a motor behavior, responding to verbal cues, using recognizable word approximation or words to describe, label, or request, and producing recognizable single words or meaning sequencing of words. These communication milestones prepare a child for work toward the socialization goal of trusting and communicating with adults. To accomplish this, the student indicates an awareness of others, attends to other’s behaviors, responds to an adult when his or her name is called, engages in organized and solitary play, interacts with an adult nonverbally or verbally to have needs met, demonstrates an understanding of a single verbal request or direction, and conveys a beginning awareness of self. The last 104
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component’s goal, academics, requires the student to respond to the environment with intentional body movements and basic mental processes of memory, classification, and receptive language. Milestones in this area show spontaneous short-term memory for people and objects, spontaneously imitate simple, familiar actions of adults, show fineand large-motor skills associated with an 18-month-old developmental level, and indicate an understanding of names of familiar objects, matching shapes of objects with corresponding space, identifying own body parts, and sorting two types of similar objects with slightly different attributes. The overall goal of stage two, responding to the environment with success, is accomplished by addressing the concerns of the students. These concerns include pleasing adults, low confidence or self-esteem, limited awareness of cause and effect, ineffective responses to adults and peers, impulsive behaviors, and frustration directed toward adults. The students’ motivation to gain adult approval and seek recognition allows the adults to address the four components in this stage. The behavioral milestone for stage two focuses on participating in routines and activity with success. Teaching students to play with materials appropriately, wait without physical intervention by an adult, and participate in sitting and movement activities without intervention helps strengthen skills. During these activities, adults encourage the students to use words constructively, such as answering questions or requests with relevant words, indicating comprehension of others, spontaneously using simple word sequences, spontaneously using words to share information with adults and other children, and describing simple, tangible characteristics of oneself and others. Socially, the students in this stage work on initiating imaginative play and appropriate social movement towards peers and participating in sharing activities and interactive play with peers. Academically, the student develops self-help skills and motor coordination comparable to the level of a 5-year-old. The student also concentrates on language, mental processes of discrimination, sequencing, and numeration, up to the number 10. While focusing on the skills needed to interact and participate appropriately in groups, the time Stage 3 students take to progress varies. The concern with looking good to others motivates students and recognition of fair play and a preoccupation with law and order makes the introduction of rules a smooth transition. Instructors teach and evaluate skills such as completing individual tasks independently, understanding the rules and reasons that regulate behavior, refraining from unacceptable behavior when others are losing control, and maintaining acceptable physical and verbal behavior in a group. The students need to show that they are able to spontaneously describe personal experiences and ideas, show positive and negative feelings appropriately, participate in group discussions, describe attributes of themselves and others, and recognize the feelings of other students. An improvement in the student’s communication skills directly affects their socialization goal of finding satisfaction in group activities. Students share materials, take turns, imitate appropriate behavior of peers, lead or demonstrate a group activity, and participate in activities suggested by other students. These beginning level skills of Stage 3 help students develop a friendship with a peer and spontaneously seek out assistance from peers (social milestones serve as the end goal). Academically, Stage 3 students vary from being able to perform at the level of a 6-year-old to reading and writing simple sentences, using 105
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addition and subtraction involving time and money, using place value, regrouping, and multiplication to solve problems. Real-life experiences and group activities are used with Stage 4 students to address the goal of investing in group processes and demonstrating concern for others. These students are concerned with meeting the expectations of others. When presented with a problem, they accept responsibility for themselves and vacillate between conforming to the peer group or standing apart. The behavioral milestones in Stage 4 address skills that enable the student to contribute to the group’s success. Participating in new activities with control, implementing acceptable alternative behaviors, and accepting responsibility for their actions and attitudes are the skills taught to achieve the behavioral goal. Both communication and socialization goals target group communication and participating successfully as a group member. The student learns to express their feelings appropriately in a group and explain the cause-and-effect relationships between feelings and behaviors. Listening to group members, expressing awareness of other’s actions, suggesting group activities, and problem solving all signal the student’s accomplishment of the socialization milestones in Stage 4. Academics, the last component in Stage 4, covers skills needed for successful social group experiences, such as computing values for money up to 10 dollars, writing to communicate information, events, and feelings, and reading for pleasure and personal information. The final stage, Stage 5, teaches skills students need in new situations. These skills help students respond to life experiences with constructive behaviors, use appropriate words to establish and enrich relationships, initiate and maintain effective interpersonal relationships independently, and utilize academic skills for personal enrichment. Behavior, communication, academics, and socialization milestones continue to be taught and addressed in this stage. Overall, developmental therapy emphasizes structured activities that help students promote their social-emotional functioning. The activities that are incorporated into DT help students feel successful and produce social-emotional competence while promoting responsible behavior in students. Developmental therapy serves as a useful teaching method for students on the autism spectrum. FURTHER INFORMATION Wood, M. M. (1996). Developmental therapy–developmental teaching: Fostering social-emotional competence in troubled children and youth (3rd ed.). Austin, TX: Pro-Ed.
MELISSA L. TRAUTMAN
DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS– FOURTH EDITION–TEXT REVISED (DSM-IV-TR) The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), is a guidebook most commonly used by mental health professionals in the United States to diagnose mental disorders. The DSM uses medical concepts and terminology and classifies criteria-based disorders into distinct categories and subcategories. For example, pervasive developmental disorder includes autistic disorder, Asperger’s disorder, Rett’s disorder, childhood disintegrative disorder, and pervasive developmental disorder–not otherwise specified. 106
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REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
JEANNE HOLVERSTOTT DIET Diet has been a focus for many families and professionals who attempt to help those with autism. Dietary interventions have been used to address several major concerns for those with autism spectrum disorders (ASD). For example, some individuals with autism have difficulties breaking down certain proteins such as gluten or casein. The gluten-free or casein-free diet has been one of the most used for those with ASD; this diet eliminates wheat, barley, oat, rye, and dairy products. Special diets have been used to treat infections from fungi such as Candida, a typically found yeast-producing disease in humans. This diet would reduce or eliminate certain sugars, carbohydrates, yeasts, and various foods prepared by curing or drying. Other well-known diets include the ketogenic and Feingold diets. Although there is limited and mixed supportive evidence for special diets, many have used this method, and much more research is needed in this area for parents and professionals to make important decisions. See also diet therapy; gluten-free. FURTHER INFORMATION Simpson, R. L., de Boer-Ott, S. R., Griswold, D. E., Myles, B. S., Cook, K. T., Otten, K., et al. (2004). Autism spectrum disorders: Interventions and treatments for children and youth. Thousand Oaks, CA: Corwin Press.
PAUL G. LACAVA DIET THERAPY The use of specific foods and special diets to treat diseases and conditions has existed for hundreds of years. Sailors used limes or vinegar to treat scurvy (for the vitamin C), and families treated thrush, an oral yeast overgrowth, with buttermilk. Today, diet therapy has been used to treat or lessen the effects of certain conditions from heart disease to autism. While there is no diet or medication that can cure autism, some believe that dietary changes may lessen the effects of autism spectrum disorder. Current dietary interventions for the treatment of autism include the use of vitamins and minerals, dimethylglycine (DMG) supplements, gluten/casein-free foods, and secretin therapy. While some of these methods may show improvement in a child’s behavior and/or language skills, well-controlled, consistent, empirically based research does not exist in sufficient amounts to warrant widespread use. VITAMINS AND MINERALS Through anecdotal reports, families have shared the benefits of using vitamin and mineral supplements in children on the autism spectrum. The rationale behind using vitamins and minerals is the idea that these children may have absorption problems and/or nutritional deficiencies due to dietary difficulties (ASA, 2006). Intestinal disorders can interfere with the proper absorption of some vitamins and minerals. This is 107
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what drives some to believe that children with autism may have deficiencies in vitamins A and several B complexes as well as minerals like magnesium. Before beginning vitamin therapy, a physician and/or health care professional must examine the child. Throughout vitamin therapy the child’s doctor should monitor blood levels, behaviors, and reactions as some vitamins may be toxic at certain levels. DIMETHYLGLYCINE Dimethylglycine (DMG) is an amino acid that is naturally found in plant and animal cells (and in foods like brown rice and liver). DMG is produced in the cells and aids in the metabolism of certain chemicals in the body. Claims have been made that it aids in the management of autism because it is an oxygenator of brain and body tissues (citation). This compound is also believed to augment immune responses. More human-based studies are needed to examine the effectiveness of this compound. GLUTEN/CASEIN-FREE This diet is the removal of all foods that contain gluten (the protein in wheat) and casein (the protein in milk). Some children with autism have difficulties breaking down certain proteins (GFCF Diet, 2006). By eliminating these foods, it is believed that the by-product of the breakdown of gluten and casein, an opiate-like compound, will be eliminated and thus improve the functioning of children with autism. As with any dietary manipulation, the child’s physician must be consulted. SECRETIN THERAPY Secretin is a hormone that is found naturally in the body (ASA, n.d.). Over the past few years, infusions of secretin were believed to decrease the symptoms of autism. Since that time, research has shown that the use of secretin to treat autism is ineffective (Sturmey, 2005). REFERENCES Autism Society of America (ASA). (n.d.). Biomedical and dietary approaches. Retrieved September 20, 2006, from www.autism-society.org. GFCF Diet. (2006). Introductory FAQs. Retrieved September 20, 2006, from www.gfcfdiet.com. Sturmey, P. (2005). Secretin is an ineffective treatment for pervasive developmental disabilities: A review of 15 double-blind randomized controlled trials. Research in Developmental Disabilities, 26, 87–97.
LYNN DUDEK DIFFERENTIAL ABILITY SCALES The Differential Ability Scales (DAS; Elliott, 1990) is an individually administered battery of cognitive and achievement tests for children and adolescents ages 2 years, 6 months through 17 years, 11 months. Because the DAS covers such a wide age range, it is divided into three levels: Lower Preschool (ages 2 years, 6 months through 3 years, 5 months), Upper Preschool (ages 3 years, 6 months through 5 years, 11 months), and School-Age (6 years, 0 months through 17 years, 11 months). The DAS was designed to measure specific, definable abilities and to provide interpretable profiles of strengths and weaknesses. The DAS also contains three achievement tests, co-normed with the cognitive battery, which allows direct ability-achievement 108
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discrepancy analysis. The DAS is considered suitable for use in any setting in which the cognitive abilities of children and adolescents are to be evaluated, although many of the DAS subtests are not appropriate for students with severe sensory or motor disabilities. The DAS cognitive battery yields a composite score labeled General Conceptual Ability (GCA) that is defined as the general ability of an individual to perform complex mental processing that involves conceptualization and transformation. The DAS contains a total of 20 subtests grouped into core cognitive, diagnostic, or achievement tests. The core cognitive subtests are those used to compute the GCA and cluster scores, while the diagnostic subtests are those considered important and useful in the interpretation of an individual’s strengths and weaknesses, but which do not assess complex mental processing well. See also normalization. REFERENCE Elliott, C. D. (1990). Differential Ability Scales. San Antonio, TX: PsychCorp.
JEANNE HOLVERSTOTT DIFFERENTIAL DIAGNOSIS Differential diagnosis is a list of any and all conditions that might be the cause of the particular signs and symptoms under investigation. By comparing signs and symptoms of similar diseases/conditions, the possibilities can be narrowed down and more specific diagnostic testing or possible treatments can be instituted. BRUCE BASSITY DIFFERENTIAL REINFORCEMENT Differential reinforcement occurs when a target behavior is reinforced while another behavior is not, or a target behavior is reinforced under certain conditions but not others, which increases positive behavior and decreases inappropriate behavior (Alberto & Troutman, 1999). The following are the five types of differential reinforcement: 1. Differential reinforcement of other behavior (DRO): reinforcement given when after a predetermined period of time the target behavior has not occurred (Reynolds, 1961). The focus is on a behavior never occurring as opposed to one occurring and then being reinforced. 2. Differential reinforcement of incompatible behavior (DRI) is the reinforcement of a behavior occurring at a time when it is impossible for the target behavior to occur (Deitz & Repp, 1983). For example, if a child is reinforced for having hands in his lap when the behavior of concern is doodling, having his hands in his lap would be an incompatible behavior to be reinforced. Having hands in your lap and doodling cannot occur at the same time. 3. Differential reinforcement of alternative behavior (DRA): reinforces an appropriate and functional alternative to the inappropriate behavior (Alberto & Troutman, 1999). The two behaviors are not incompatible. For example, a student may be reinforced for using appropriate words to express emotion instead of using aggressive acts. The appropriate words and aggression are not incompatible, but the words are an alternative behavior to the aggression. 4. Differential reinforcement of low rate of behavior (DRL): reinforces target behavior when it is present at a low rate (Cooper, Heron, & Heward, 1987).
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DIMETHYLGLYCINE (DMG) 5. Differential reinforcement of high rate of behavior (DRH): reinforces target behavior when it is present at higher rates (Cooper, Heron, & Heward, 1987).
REFERENCES Alberto, P. A., & Troutman, A. C. (1999). Applied behavior analysis for teachers. Upper Saddle River, NJ: Merrill, 279–289. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall. Deitz, D. E., & Repp, A. C. (1983). Reducing behavior through reinforcement. Exceptional Education Quarterly, 3, 34–46. Reynolds, G. S. (1961). Behavioral contrast. Journal of the Experimental Analysis of Behavior, 4, 57–71.
JESSICA KATE PETERS
AND
TARA MIHOK
DIMETHYLGLYCINE (DMG) Dimethylglycine (DMG) is a non-protein amino acid found naturally in animal and plant cells. It is the main component of calcium pangamate, also called pangamic acid, and best known as vitamin B15. DMG is legally classified as a food, and it is available in many health food stores without a prescription. The history of DMG began in 1965 when two Russian investigators, M. G. Blumena and T. L. Belyakova, published a report showing considerable improvement in the speech of 12 of a group of 15 mentally handicapped children who had not been able to use speech to communicate (Rimland, 1990). The children had been treated with a substance variously known as calcium pangamate. In addition to enriched vocabulary, the children began to use simple sentences, their general mental state improved, and there was better concentration and interest in toys and games. An American psychiatrist used DMG on children with autism produced similar results. Concurrently, B-15 entered the United States market, with manufacturers claiming to have replicated the Russian formula. The Food and Drug Administration was forced to intervene, outlawing B-15 and permitting the sale of DMG as a food, not as a drug or vitamin. While anecdotal evidence exists supporting the benefits of DMG for children with autism, there is no clear empirical research supporting such claims. See also diet therapy. REFERENCE Rimland, B. (1990). Dimethylglycine (DMG), a nontoxic metabolite, and autism. Autism Research Review International, 4(2), 3.
JEANNE HOLVERSTOTT DIR/FLOOR TIME. See Developmental Individual-Difference Relation-Based Intervention DIRECT INSTRUCTION Direct instruction is used to describe a lesson where the teacher has control. The steps of a direct instruction include: (a) the teacher giving a lecture, (b) the teacher guiding the students through a complex problem with the problem broken down into 110
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simple steps, (c) the students are given, one by one, the simple steps to carry out on their own, and (d) the students are given one or many simple problems to accomplish on their own. The primary goal of direct instruction is to increase student achievement through carefully focused instruction. Clear instruction eliminates misinterpretations and can greatly improve and accelerate training. It provides a model of instruction that emphasizes the use of carefully planned lessons designed around a specific knowledge base and a well-defined set of skills for each subject. JAN L. KLEIN DIRECT OBSERVATION Part of the assessment process, direct observation is a common method of collecting information by formally observing an individual, several persons, or even a group. In direct observation, one may observe specific behaviors (such as the number of times a student raises his hand in class) or overall general behavior. PAUL G. LACAVA DISABILITY A disability refers to restrictions or lack of ability to perform an activity within a range that is considered typical. A disability can be temporary or permanent and typically produces difficulties when attempting to function in society. For a person with autism, disability may refer to impaired development in communication, social interaction, and behavior. JAN L. KLEIN DISCRETE TRIAL TRAINING (BRIEF DEFINITION) Discrete trial training is a behavioral method stemming from the field of applied behavior analysis (ABA) and is commonly used in the field of autism. The teaching method includes several key steps. First, the teacher gives the student an instruction. Many times this instruction will be given during direct instruction, but can also be given during other routines or incidental teaching. The child is then expected to respond to the teacher who then follows the response by giving corrective feedback and/or reinforcement for correct or approximated responses. Each sequence of steps is considered to be one discrete trial. This type of instruction is only one method within the field of applied behavior analysis (Anderson, Taras, & Cannon, 1996). REFERENCE Anderson, S. R., Taras, M., & Cannon, B. O. (1996). Teaching new skills to young children with autism. In C. Maurice, G. Green, & S. L. Luce (Eds.), Behavioral intervention for young children with autism (pp. 181–194). Austin, TX: Pro-Ed.
TARA MIHOK DISCRETE TRIAL TRAINING (EXTENDED DEFINITION) Discrete trial training (DTT) is a highly structured teaching method that involves carefully manipulated sequences of antecedents and consequences in order to elicit a 111
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target behavior. Therapists primarily use DTT with children with autism or other developmental disabilities; however, DTT can be used with other children as well. DTT requires the teacher to break down skills into small and specific instructional steps. Educators teach each part in isolation until the child masters the skill, and then the educator adds the next step. The steps are taught through repeated trials. Each trial has a clear beginning and a clear end, hence the term discrete. At the onset of teaching a new skill, the teacher uses an errorless teaching approach heavily prompting the student to avoid incorrect responding. The level of prompting decreases the student being able to respond independently. If the response is incorrect, an error correction procedure involving prompting will occur. DTT should and typically does occur in a designated ‘‘work area’’ free of distractions (e.g., a table or space where student and teacher sit directly across from one another). The skills that can be taught using DTT include: compliance, attending, language, imitation, preacademic/academic, motor, self-help, and beginning play and social skills. The components of a discrete trial include: antecedent/instruction (SD-discriminative stimulus), behavior/response (R), consequence (SR-reinforcing stimulus), and the intertrial interval (ITI). Again, a prompt (SP-prompting stimulus) will also be present when teaching a new skill (errorless teaching) or in an error correction procedure. The discrete trial has also been referred to as a three-term contingency for the three main components: antecedent, behavior, consequence (or ABC). THE ANTECEDENT/INSTRUCTION (SD–DISCRIMINATIVE STIMULUS) The antecedent initiates a discrete trial. Most antecedents are verbal in nature and need to be delivered with an authoritative instructional voice. Initially, antecedents should be simple (e.g., ‘‘throw away’’) due to language difficulties. Later, when a student acquires more language skills, they can become more complex (e.g., ‘‘Throw away your plate and put your cup in the sink’’). The antecedent may also be nonverbal (e.g., holding up a card for the student to read and follow directions). It is important to avoid pairing the child’s name with the antecedent. When this is done, the child associates his name as part of the sequence of the trial. A child responds to his name but it should be set apart from other instructions. It is equally important to avoid repeating an antecedent without providing a consequence. By repeating an antecedent, we actually train a child to wait until he hears an instruction for the third or fourth time before he responds. If more than one person works with a particular student, it is imperative that a consistent format and planned wait time is used. This consistency must be maintained across all team members, and any changes to either should be a team decision. THE RESPONSE/BEHAVIOR (R) Consistent criteria must be used to determine an appropriate response. Extraneous behaviors (e.g., self-stimulatory behaviors) should not be present at the time of the response. The time that lapses between the delivery of the antecedent and the child’s response should not extend 3–5 seconds. Otherwise, a child learns that a delayed response is acceptable and provides time for off-task behaviors to occur. A non-response is considered incorrect and may occur for several reasons. The student 112
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may not be ready, may not know the correct response, or finds the response aversive. The predetermined criteria for mastering a step must be met before adding the next step. Changes in the criteria need to be agreed upon by all team members. THE CONSEQUENCE (SR–REINFORCING STIMULUS) The consequence consists of a reward for correct responses to strengthen a desirable behavior or an informational ‘‘no’’ and the removal of a reward to weaken an undesirable behavior. Positive reinforcement occurs when something preferred is delivered to the child (e.g., edibles). On the other hand, negative reinforcement occurs when something unpleasant to the child is removed (e.g., ‘‘escape’’). It is imperative that the consequence immediately follows the response in order for the child to correctly associate the direction and behavior. Conducting a reinforcement inventory on a regular basis allows a teacher to determine the most highly preferred reinforcers (primary) versus less preferred reinforcers (secondary). A reinforcer should always be paired with social reinforcement in order to train ‘‘praise’’ as a reinforcer in itself. Particular attention should be paid to not satiate any one reinforcer. Vary the reinforcement provided, conduct regular reinforcement inventories, and limit the use of the reinforcer outside of the work session. Provide high levels of reinforcement while introducing and shaping (accepting closer and closer approximations) a response and then fade reinforcement to a more intermittent schedule. Using a token economy reinforcement system (e.g., blocks in a cup or a penny board) teaches delayed gratification. With this system, more trials can be completed before a reinforcement break is given, maximizing therapy times. THE INTERTRIAL INTERVAL (ITI) The intertrial interval is simply a brief pause between trials. It should be just long enough to signal the end of one trial (consequence provided) and the beginning of the next (antecedent given). It must be short enough to avoid eliciting avoidance or undesirable behaviors. Often times, a teacher utilizes brief time to record data and reset the teaching items needed for the next trial. THE PROMPT (SP–PROMPTING STIMULUS) A team decision determines the sequence of prompting used to teach a specific skill. In order to avoid prompt dependency, prompt least to most (e.g., model, visual, position, verbal, physical). When teaching independent functioning skills, it is important to prompt physically rather than verbally. Otherwise, children with autism tend to associate verbal prompts as part of the skill sequence and become dependent on the verbal cue. Pay particular attention that you are not inadvertently prompting a child with your body language. Systematic fading of prompts is also necessary to avoid prompt dependency. For example, fade a physical hand over hand prompt to a prompt at the wrist, then the elbow, then the shoulder, and then an independent response. Prompted trials should always be followed by unprompted trials to ensure independent responses. Once a child has mastered a skill, reduce the reinforcement for prompted trials (e.g., offer a secondary reinforcer) and provide primary reinforcers for independent responses only. 113
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PUTTING IT ALL TOGETHER The order of the discrete trial can thus be represented as: SD fi R fi SR fi ITI (SP) -orA fi B fi C fi ITI Antecedent Behavior Consequence Intertrial Interval
GENERALIZATION Due to the highly structured nature of DTT, it is imperative that a teacher programs or plans for generalization of skills. Generalization must occur across individuals, materials, environments, and antecedents as language skills increase. When teaching items are mastered and moved to maintenance-level programs, they are typically introduced into target generalization programs in one or more of the previous areas depending on the child and the skill. For example, when a label is mastered expressively, the original teaching picture can be put in a maintenance program while the ‘‘label’’ is moved to generalization programs (e.g., materials—different pictures of the same item) that would eventually include all four areas listed herein. FURTHER INFORMATION Leaf, R., & McEachin, J. (1999). A work in progress: Behavior management strategies and a curriculum for intensive behavioral treatment of autism. New York: DRL Books. Lovaas, O. I. (1981). Teaching developmentally disabled children: The me book. Baltimore: University Park Press. Lovaas, O. I. (2003). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed. Maurice, C., Green, G., Luce, S. C. (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: Pro-Ed. Simpson, R. L., & Myles, B. S. (1998). Educating children and youth with autism: Strategies for effective practice. Austin, TX: Pro-Ed. Sundberg, M. L., & Partington, J. W. (1998). Teaching language to children with autism or other developmental disabilities. Pleasant Hill, CA: Behavior Analyst, Inc.
MICHELE MULLENDORE DISCRIMINATION Discrimination is the act of making distinctions between stimuli on the basis of a particular category (i.e., race, color, shape, gender). Behavior analytic approaches focus heavily on the development and reinforcement of making correct discriminations. More generally, discrimination is critical in the development of language (pronoun usage) and social competence (social cues). See also differential reinforcement. JEANNE HOLVERSTOTT DISCRIMINATIVE STIMULUS In the field of applied behavior analysis, the discriminative stimulus is usually referred to as the SD. The SD is an antecedent trigger that signals that a specific behavior will be either reinforced or punished based upon past experiences. The SD 114
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can be signals such as words, gestures, or sounds that cue the person that reinforcement will occur if the stimulus is followed by correct behavior (Lovaas, 2003). Discrimination between stimuli is often learned by a behavior being reinforced following one trigger and being punished in the presence of another (Driscoll, 2005). For example, in teaching a child to sit down, the phrase ‘‘Sit down’’ can be a discriminative stimulus to the child, assuming that he or she follows the instruction with the knowledge that reinforcement will follow. For other children, the bell ringing at the end of the day is the discriminative stimulus for them to leave the classroom to go home (assuming that leaving school is reinforcing to the child). See also punishment; reinforcer. REFERENCES Driscoll, M. P. (2005). Psychology of learning for instruction (3rd ed.). Boston: Pearson Education, Inc. Lovaas, O. I. (2003). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed.
TARA MIHOK
AND
ANDREA HOPF
DISINTEGRATIVE PSYCHOSIS. See Childhood Disintegrative Disorder DISTRIBUTED PRACTICE Distributed practice is a strategy in which the student exerts or distributes effort over time rather than concentrating effort within a short period. Frequent distributed practice helps students maintain and develop concepts and skills that were previously introduced in a sequence and gives the students the time needed to find appropriate and meaningful ways of integrating information from a variety of sources. Distributed practice does more than simply increase the amount learned; it frequently shifts the learner’s attention away from the verbatim details of the material being studied to its deeper conceptual structure. JAN L. KLEIN DOPAMINE Dopamine is a substance that is synthesized by the adrenal glands (located on top of the kidneys). It has several functions in the body including regulation of circulation and blood pressure and as a neurotransmitter in the brain. It is an immediate precursor to the formation of norepinephrine. BRUCE BASSITY DOUBLE BLIND Double blind is a type of experimental research design where both the researchers and the participants do not know who is receiving the treatment. For example, in a medication investigation, neither the researcher nor the participants know who is receiving the drug under investigation or who is receiving the placebo. The purpose of the double-blind study is to increase the strength of claims by researchers that the intervention (the independent variable) caused the change in behavior for participants who received the treatment and that other factors were not an issue. See also experimental design. 115
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FURTHER INFORMATION Everitt, B. S. (2002). The Cambridge dictionary of statistics (2nd ed.). Cambridge: Cambridge University Press. Salkind, N. J. (2005). Exploring research (6th ed.). Upper Saddle River, NJ: Prentice Hall.
PAUL G. LACAVA DOUBLE INTERVIEW The double interview is an informal assessment technique to explore one’s capacity to shift perspective and the focus of one’s language from talking about one’s self to talking about another person. The first task in the double interview is for the assessing clinician to interview the client by asking specific questions to the client about the client (e.g., What are your hobbies? Do you have any siblings? What do you like/ dislike about school? etc.). As the client answers, the assessor is to consider not only the client’s ability to narrate a solid response to provide the assessor with a range of novel information, but the assessor is also evaluating the student’s nonverbal aspects of communication (e.g., eye contact, body language, tone of voice, etc.). It is expected that the client should be near his or her communicative best when talking about himor herself. The assessor is careful to only ask questions and to only provide brief responses to show interest in the client, or to ask follow-up questions to gain access to more information about the client. Once the assessor has completed their interview with the client, they exclaim, ‘‘Wow, I just learned a lot about you (They can then state specifics of what they have learned) by interviewing you. But I realize that you don’t know very much about me, so I thought it would only be fair if I let you interview me.’’ The interviewer then reviews with the client that an interview consists of asking questions to the person who is being interviewed about that person. The assessor can also try and make the task easier on the client by providing pictures that give some information about the assessor by showing the client pictures of the assessor’s family, etc. After providing this extra support, they then say, ‘‘OK, this is a good time to interview me.’’ The assessor then waits and observes, writing down any response or question that the client provides. At this point it is very common for the client to have a much more difficult time generating language. It is often very difficult for the clients to ask any questions, and they may say, ‘‘I can’t do this!’’ Given that this task requires the client to shift perspective and focus on the assessor, the client struggles given that this is one aspect of social thinking that is a great challenge for him or her. It is not uncommon for the client to start to explain that he or she ‘‘can never do this’’ and they ‘‘never know what to say to people.’’ Preliminary research, done at the University of Kansas by Miller (2004) and Zweber (2004) demonstrated that the double interview helps to differentiate our clients with social cognitive deficits from their peers at age 8 years old and beyond. REFERENCES Miller, A. C. (2004). Double interview task: Assessing the social communication of children with Asperger syndrome. Unpublished Masters Thesis. University of Kansas. Zweber, K. J. (2004). Double interview: Assessing the social communication of adolescents with Asperger syndrome. Unpublished Masters Thesis. University of Kansas.
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FURTHER INFORMATION Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Michelle Garcia Winner.
MICHELLE GARCIA WINNER
AND JAMIE
RIVETTS
DSM-IV. See Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revised DUE PROCESS Due process is a procedure guaranteed by federal law for families and school professionals for resolving disputes regarding special education services that cannot be resolved through mediation. FURTHER INFORMATION U.S. Department of Education. (2004). Procedural safeguards: Due process hearings. www.ed.gov/ policy/speced/guid/idea/tb-safeguards-3.pdf.
KATHERINE E. COOK
DURRELL ANALYSIS OF READING DIFFICULTY (DARD) The Durrell Analysis of Reading Difficulty (DARD; Durrell & Catterson, 1980) is an individually administered assessment for children ages pre-kindergarten and older designed to assess the reading abilities in the following skill areas: oral and silent reading, listening comprehension, word recognition and analysis, listening vocabulary, sounds in isolation, spelling and phonic spelling, visual memory of words, identification of sounds in words, prereading phonics abilities, syntax matching, identifying letter names in spoken words, phoneme awareness, letter names and letter writing, and copying. REFERENCE Durrell, D. D., & Catterson, J. H. (1980). Durrell Analysis of Reading Difficulty. San Antonio, TX: PsychCorp.
JEANNE HOLVERSTOTT
DYSBIOSIS Symbiosis is the medical term for the balance between a person’s intestinal tract and good bacteria. Good bacteria within the intestinal tract is responsible for detoxification, production of vitamins, and protection from unfriendly organisms. Dysbiosis is the opposite of symbiosis and is the medical term for an imbalance in the gastrointestinal tract. There are three main causes of dysbiosis: parasites, fungus overgrowth, and poor diet. Characteristics can be acute (diarrhea, nausea, abdominal pain, cramps) or chronic (loose stool, constipation, bloating, gas, food cravings, allergies, fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome). KATHERINE E. COOK 117
DYSPHASIA
DYSPHASIA Dysphasia is a speech disorder characterized by impairments in expressive speech, writing, and impairments in comprehension of spoken and written language. Although individuals with dysphasia typically do not have impaired intellect, they are often viewed as mentally impaired. Aphasia is a severe form of dysphasia. This disorder arises from damage to the left side of the brain, which is responsible for speech and language. KATHERINE E. COOK
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E EARLY COPING INVENTORY The Early Coping Inventory (ECI; Zeitlin, Williamson, & Szczepanski, 1988) is an observation instrument used for assessing the coping-related behavior of children who function developmentally from 4 to 36 months. The 48 items in this inventory are divided into three categories. Sensorimotor organization behaviors are those skills used to regulate psychophysiological functions as well as to integrate sensory and motor process. Reactive behaviors are actions used to respond to the demands of physical and social environments. Self-initiated behaviors are autonomously generated, self-directed actions used to meet personal needs and to interact with objects and people. Professionals as well as nonprofessionals who are knowledgeable in infant development may administer and score the inventory. If observers are not familiar with the child, they should observe the child at least three times in different situations. Analysis of a child’s scores on this instrument provides information about level of coping, style, and specific strengths and weaknesses. The findings can then be used to create educational and therapeutic interventions. In addition, the ECI can be used to involve parents in its use as a means of increasing knowledge of the child and communication with staff. The ECI can also be used to support staff development and training to increase observation skills, expand their domain of concern, facilitate teamwork, and measure child progress. REFERENCE Zeitlin, S., Williamson, G. G., & Szczepanski, M. (1988). Early coping inventory. Bensenville, IL: Scholastic Testing Service, Inc.
JEANNE HOLVERSTOTT
EARLY INTERVENTION Early intervention is the purposeful application of resources with the aim of developing or improving interactions between an individual and the environment (Hooper & Umansky, 2004). It applies to children from birth to school age that are discovered to be at risk, have disabilities, or other special needs that may affect their development. Early intervention may be center-based, home-based, hospital-based, or a combination. See also homebound/hospital bound program.
ECHOIC/VERBAL BEHAVIOR
REFERENCE Hooper, S. R., & Umansky, W. (2004). Young children with special needs. Upper Saddle River, NJ: Pearson Education, Inc.
KAI-CHIEN TIEN ECHOIC/VERBAL BEHAVIOR Echoic behavior is when a child uses verbal imitation. For example, in verbal behavior the child would use echoic behavior to request a desired item. The echoic behavior would be repeated and eventually the child would learn that the word has the specific function of getting his or her need met. TERRI COOPER SWANSON
ECHOLALIA: IMMEDIATE, DELAYED, MITIGATED Echolalia is the repeated use of words or phrases used by others. There are three different forms of echolalia: immediate, delayed, and mitigated. Immediate echolalia refers to words or phrases that are repeated immediately or very soon after the model of the utterances was first heard. Delayed echolalia refers to the echo of words or phrases after a lapse of time. Some children repeat one or numerous phrases from video clips; this is a form of delayed echolalia. The third form of echolalia is referred to as mitigated where the speaker clearly is repeating a phrase, but it is not an exact repetition. Historically echolalia was viewed to be noncommunicative. However, in recent years practitioners have realized that echolalia often serves a communicative function for the individual. For example, after hearing his mother one evening at dinner repeatedly ask with a tone of frustration if William wanted ketchup on his fish sticks (fisherboys), William starting using the phrase, ‘‘Do you want ketchup on your fisherboys?’’ to indicate that he was frustrated. Until William was taught a more appropriate and understood phrase he used, ‘‘Do you want ketchup on you fisherboys?’’ in any setting and situation where he felt anxious or frustrated. KATHERINE E. COOK ECOLOGICAL INVENTORY This highly individualized assessment analyzes all aspects (i.e., leisure, domestic, school, community, vocational) of the learner’s current and future environments. The student’s abilities are then compared to the assessed demands of each of the target environments and a list of skills is identified for use as instructional priorities. FURTHER INFORMATION Brown, L., Branston, M. B., Hamre-Nietupski, S., Pumpian, I., Certo, N., & Gruenewald, L. (1979). A strategy for developing chronological-age-appropriate and functional curricular content for severely handicapped adolescents and young adults. Journal of Special Education, 13, 81–90. Snell, M. E., & Brown, F. (2006). Instruction of students with severe disabilities (8th ed.). Upper Saddle River, NJ: Prentice Hall. Westling, D. L., & Fox, L. (2004). Teaching students with severe disabilities (3rd ed.). Upper Saddle River, NJ: Prentice Hall.
THERESA L. EARLES-VOLLRATH 120
ELIGIBILITY
EDUCATIONAL PLACEMENT There are different types of educational placement for children with autism. Depending on the child’s need, his Individualized Education Program may be carried out in general education, in special education, at home, in an institution, or in other settings. In all cases, the parents have the right to be a member of the group that decides the educational placement of the child. See also homebound/hospital bound program. KAI-CHIEN TIEN
EISENBERG, LEON Leon Eisenberg received his medical degree from the University of Pennsylvania (1946) and took his internship at the Mount Sinai Hospital in New York City. He took a fellowship in child psychiatry at the Johns Hopkins Hospital in Baltimore, Maryland, under the direction of Professor Leo Kanner (1954). Eisenberg worked closely with Kanner during this fellowship, and they became colleagues, publishing research together on autism. In 1967, he moved to Harvard as chief of psychiatry where he became chair of the Department of Social Medicine and Health Policy in 1980. In 1993, Dr. Eisenberg reached emeritus status at Harvard Medical School and continues to work full time. Eisenberg has published more than 250 articles in refereed journals, 130 book chapters, and 9 edited books. FURTHER INFORMATION Harvard Medical School Department of Social Medicine. (n.d.). Faculty: Leon Eisenberg. Retrieved on November 24, 2006 from www.hms.harvard.edu/dsm/WorkFiles/html/people/ faculty/LeonEisenberg.html. Kanner L., & Eisenberg, L. (1956). Early infantile autism. American Journal of Orthopsychiatry, 26, 55–65.
TERRI COOPER SWANSON
ELECTROENCEPHALOGRAM An electroencephalogram (EEG) measures the electric activity in the brain. The electrical brain activity is measured by placing electrodes onto the scalp of the patient. FURTHER INFORMATION Tuchman, R. F., & Rapin, I. (1997). Regression in pervasive developmental disorders: Seizures and epileptiform electroencephalogram correlates. Pediatrics, 99(4), 560–567.
TERRI COOPER SWANSON
ELIGIBILITY Eligibility is the process where the Individualized Education Program (IEP) team evaluates formal and informal assessment results to determine if a student qualifies for special education services. If a student meets eligibility, an IEP is written and implemented. KATHERINE E. COOK 121
ELIMINATION DIET AND FOOD SENSITIVITIES
ELIMINATION DIET AND FOOD SENSITIVITIES This medically supervised diet is used to identify food sensitivities and allergies. While food intake levels are maintained, the variety of foods consumed is restricted to the least reactive foods (those foods that cause the least digestive problems for the majority of people) such as rice and potatoes. Additional foods are gradually and systematically added according to the plan specified by the health care provider. The patient or caregiver keeps a daily food diary noting the foods eaten and any responses. After time, the physician may suggest a challenge, which is a medically supervised reintroduction of a suspected problem food to determine whether or not a food sensitivity exists. The duration of the diet varies by the sensitivity of the patient and by the success or lack of success detecting which food or foods are the causes of the patient’s sensitivities. Elimination diet should not be confused with the Gluten-free/Casein-free Elimination Diet or the Candida Elimination Diet. FURTHER INFORMATION Hurt Jones, Marjorie (2001). The allergy self-help cookbook: Over 325 natural foods recipes, free of all common food allergens: Wheat-free, milk-free, egg-free, corn-free, sugar-free, yeast-free. New York: Rodale Books. Le Breton, M., & Kessick, R. (2001). Diet and intervention in autism: Implementing a gluten free and casein free diet: A guide for parents. London: Jessica Kingsley Publishers. Tidwell, J. (2006). Food allergies/intolerances. Retrieved August 18, 2006, from About health and fitness Web site: http://allergies.about.com/cs/foods/a/blfood.htm.
MYRNA J. ROCK
EMBEDDED FIGURES TEST (EFT) An embedded figures test presents an individual with a simple (target) shape in isolation and then asks this person to find this same shape in a larger, more complex configuration. Research (Witkin, Dyk, Faterson, Goodenough, & Karp, 1962; BaronCohen & Hammer, 1997) has illustrated that males are significantly faster than females at locating the embedded figure. REFERENCES Baron-Cohen, S., & Hammer, J. (1997). Parents of children with Asperger syndrome: What is the cognitive phenotype? Journal of Cognitive Neuroscience, 9, 548–554. Witkin, H. A., Dyk, R. B., Faterson, H. F., Goodenough, D. G., & Karp, S. A. (1962). Personality through perception. New York: Harper & Row.
JEANNE HOLVERSTOTT
EMBEDDED SKILLS Embedded skills are present within naturally occurring activities and allow for opportunities to practice learning objectives. As such, they allow for new skills to be practiced in the presence of already learned or ongoing skills. For example, to practice letter recognition, a child would be allowed to select only movie titles with a particular letter present. JEANNE HOLVERSTOTT 122
ENURESIS
EMOTIONAL SUPPORT Emotional support is assistance obtained through relationships, either professional or familial. Psychologists, social workers, counselors, and medical doctors are mental health professionals often enlisted by individuals to provide therapeutic support. Friendships and partnerships with family, friends, and caregivers can also serve as a source of emotional support. JEANNE HOLVERSTOTT EMPIRICAL EVIDENCE. See Empiricism EMPIRICISM Empiricism is a Western concept that espouses knowledge can be derived through careful observation and cataloging of phenomena and extrapolating laws or principles from these observations. Empiricism’s origins in the West in its most developed form are in the philosophy of Aristotle, whose theories on intellectual inquiry first introduced the process of experiment or a controlled, replicable experience. The process of replication enables others to build a knowledge base by testing for the truths of the laws and theories. The resultant knowledge areas are then grouped to further designate experimental sciences, such as physics and medicine. Empirical evidence of the observed behaviors of individuals with autism further expands the understanding and knowledge of the disorder. See also experimental design. MELANIE D. HARMS ENCOPRESIS Encopresis is the involuntary passage of stool taking place over at least 6 months in duration and in an individual over the age of 4 years. This is often a result of chronic constipation or retaining of stools. BRUCE BASSITY ENGAGEMENT Engagement is the amount of time that children spend involved with the environment (adults, peers, or materials) in a way that is appropriate given their age, abilities, and surroundings. See also age appropriate; chronological age; mental age. JAN L. KLEIN ENURESIS Enuresis is the involuntary discharge of urine after the age when voluntary bladder control is usually established, typically around 5 years of age. Nocturnal (night time) enuresis is the most common form in children, present in approximately 10 percent of 5-year-olds and 1 percent of 15-year-olds. Enuresis may be due to bladder control never being established or a regression in bladder control. BRUCE BASSITY 123
ENVIRONMENT
ENVIRONMENT Does the natural environment (water, air, earth) contain toxins that may contribute to autism? Moreover, do other man-made substances in the environment contain materials that may contribute to autism? These questions have been some of the most controversial within the field of autism into the mid-2000s. The role of the environment in the cause of autism has been a question addressed for many decades. Recently, the role of the environment has been questioned as a potential source for the huge increases in the prevalence of autism. Historically, autism was considered an emotional disorder caused by ineffective parenting. That is, the social environment was deficient between child and parent and thus autism was the outcome. This was proven wrong after decades of research and autism became known as a neurobiological/developmental disorder. Although the conceptualization of autism has changed over time, the question of what may contribute to the etiology of this disability still remains. Some believe that autism is caused by genetics alone. Others believe that their child became autistic when exposed to some environmental toxin. In the 2000s, it is common to believe that a combination of a genetic predisposition to autism as well as some environmental insult causes autism. The severity of the disability would therefore depend on the number of genes affected in the individual as well as the type of environmental insult that occurs. Some environmental toxins that have been questioned in the development of autism include heavy metals such as mercury, chemicals, pesticides, pre- and postnatal viruses, flame retardant materials, and food additives. There have been reports of individual cases of autism spectrum disorders (ASD) being associated with various prenatal infections and environmental toxins. This includes maternal use of alcohol and cocaine, as well as infection by cytomegalovirus. In the 1990s and into the 2000s, the claim that the MMR vaccination and mercury were possible culprits causally connected to autism became a critical research concern. Some believed that the huge increase in autism over the previous years was causally related to either the MMR vaccination in young children or in the mercury that was part of the preservative thimerosal that was in many childhood vaccines. It was claimed that children who had weak immune systems, or those who were already predisposed to having autism, were placed at risk with the ongoing accumulation of mercury in these vaccinations. It was claimed that their systems could no longer process and expel the mercury poisoning and thus autism developed. As of 2007, this remains highly controversial. However, the preponderance of the evidence from government and other medical/scientific studies suggests that neither the MMR vaccination nor the use of mercury/thimerosal were causally connected to the increase in autism. Much research is still needed in this critically important area, and it is not yet known if there is a connection between autism and vaccinations or mercury for some subsets of particularly vulnerable individual children. At this point, however, conclusive evidence has not been presented to confirm which environmental factors contribute to autism. FURTHER INFORMATION Centers for Disease Control and Prevention. (2004). FAQs about MMR vaccine and autism. Retrieved March 30, 2005, from http://www.cdc.gov/nip/vacsafe/concerns/autism/autismmmr.htm.
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ERROR CORRECTION Kennedy, R. (February 2005). Deadly immunity [Electronic version]. Rolling Stone, Retrieved August 18, 2005, from http://www.rollingstone.com/politics/story/_/id/7395411?rnd=11243888 56090&has-player=true&version=6.0.11.847. Kirby, D. (2005). Evidence of harm: Mercury in vaccines and the autism epidemic: A medical controversy. New York: St. Martin’s Press. National Broadcasting Company. (Executive Producer). (February 23, 2005). The Today Show [Television Broadcast]. New York: National Broadcasting Company. Rutter, M. (2005). Etiology of autism: Findings and questions. Journal of Intellectual Disability Research, 49, 231–238.
PAUL G. LACAVA ENVIRONMENTAL STRESSORS Environmental stressors refer to a variety of internal and external events that could interfere with an individual being successful in the immediate future, and as such, need to be monitored and acted on as quickly as possible. Such stressors may include: (a) prejudice toward someone who is perceived as ‘‘different’’ and the effect that might have on the person, such as negative self-concept, anxiety, and expectation of failure; (b) restricted social and vocational opportunities; (c) inadequate social supports; (d) life changes such as a new teacher, a new job, living arrangements, family losses, and other life changes; (e) the inability to process sensory information and ‘‘make sense’’ of the world; and (f) victimization, including social and sexual abuse. These stressors need to be considered seriously when working with individuals with ASD as lack of immediate action to reduce or assist the individual’s handling of these stressors can have a long-term impact on the person’s ability to develop life skills and develop the skills necessary to manage their world. ANDREA M. BABKIE EPIDEMIOLOGY Epidemiology is the study of outbreaks of disease. Scientific analysis is used by epidemiologists to understand how diseases start, how they are spread, and how they can be prevented. There are several possible causes of autism including: (a) genetics, (b) vaccinations, (c) environment, and (d) diet. At this time there are no research supported cures or solutions to prevent autism spectrum disorders. See also environment. TERRI COOPER SWANSON ERROR CORRECTION Error correction is the process or procedure followed when a student gives an incorrect response. Methods of error correction include, but are not limited to, overcorrection, time-out, and a no-no-prompt procedure. Because some students with autism spectrum disorders are highly sensitive to error correction, there is often an attempt to use ‘‘neutral’’ forms of error correction such as offering no verbal reaction to a student’s incorrect response and instead intentionally looking away from the student for a few seconds. See also applied behavior analysis. KATIE BASSITY 125
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ESCAPE TRAINING Escape training is similar to negative reinforcement. When a student does not enjoy an activity or situation, he may be allowed to escape it after completing a certain portion of the work or activity. In this way, the student learns that some work must be completed, but that once the work is completed, he will be allowed to move to a more enjoyable activity. KATIE BASSITY ESTABLISHING OPERATION An establishing operation, as described by Michael (1982) is ‘‘any change in the environment which alters the effectiveness of some object or event as reinforcement and simultaneously alters the momentary frequency of the behavior that has been followed by that reinforcement’’ (pp. 150–151). Establishing operations may either increase the effectiveness of the reinforcer (due to deprivation) or decrease the effectiveness of the reinforcer (due to satiation; Alberto & Troutman, 1999). These environmental, social, or physiological events affect the motivation of an individual and thus affect the behavior that is influenced by the reinforcers (Michael, 1993). Because a person’s desire for food is greater when he or she is hungry, behavior that is reinforced by food may be strengthened before a meal. On the contrary, edible reinforcement may be less effective after a meal, weakening a behavior linked to that reinforcement. Establishing operations have also been referred to as setting events or motivating operations (Laraway, Snycerski, Michael, & Poling, 2003). REFERENCES Alberto, P. A., & Troutman, A. C. (1999). Applied behavior analysis for teachers (p. 230). Upper Saddle River, NJ: Merrill. Laraway, S., Snycerski, S., Michael, J., & Poling, A. (2003). Motivating operations and terms to describe them: Some further refinements. Journal of Applied Behavior Analysis, 36, 407–414. Michael, J. (1982). Discriminating between discriminative and motivational functions of stimuli. Journal of the Experimental Analysis of Behavior, 37(1), 149–155. Michael, J. (1993). Establishing operations. The Behavior Analyst, 16, 191–206.
FURTHER INFORMATION Michael, J. (2000). Implications and refinements of the establishing operation concept. Journal of Applied Behavior Analysis, 33, 401–410.
TARA MIHOK
AND JESSICA
KATE PETERS
EVALUATING ACQUIRED SKILLS IN COMMUNICATION–REVISED (EASIC-R) Evaluating Acquired Skills in Communication–Revised (EASIC-R; Riley, 1991) is an inventory that was developed to measure spoken language, both receptive and expressive, of children with autism ages 3 months to 8 years. The EASIC-R has also been used successfully with individuals who have developmental language delays. The tool assesses semantics, syntax, morphology, and pragmatics communication skills at five levels: Pre-Language, Receptive 1, Expressive 1, Receptive 2, and Expressive 2. Results can be displayed on the Skills Profile to show changes that have occurred from one testing session to another. In addition, results can be portrayed on the 126
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Developmental Age Chart. The child’s communication skills are arranged in easy to difficult order along with the age ranges at which children normally acquire each of the described skills. Administration time ranges from 15 to 30 minutes. REFERENCE Riley, A. M. (1991). Evaluating Acquired Skills in Communication–Revised. San Antonio, TX: Harcourt Assessment.
AMY BIXLER COFFIN EVALUATION REPORT An evaluation report provides a detailed, written summary of the information gained through the assessment process. There are no standardized formats for evaluation reports, however most reports contain many of the following sections: identifying data, reason for referral, background history, observations, tests administered, test results, test-by-test analysis, conclusions, and a summary table. See also standardization. FURTHER INFORMATION Overton, T. (2003). Assessing learners with special needs: An applied approach. Upper Saddle River, NJ: Merrill/Prentice Hall.
THERESA L. EARLES-VOLLRATH EVIDENCE BASED The term evidence based was first used in the field of medicine (Cutspec, 2004) and has since been used to describe a variety of professions. The evidence-based approaches have advantages and disadvantages, but the variety of these approaches provides an implication that the term evidence based is not enough in itself to describe what a given profession provides. In the field of education, there is the potential for an evidence-based approach combined with knowledge and practice in an attempt to move from individualistic approaches and designing original research as the foundation on which to assess best practices for educators. REFERENCE Cutspec, P. A. (2004). Origins of evidence-based approaches to best practice: Evidence-based medicine. In P. A. Cutspec & A. L. Watson (Eds.), Interlock: Identifying, synthesizing, validating, and disseminating evidence-based practices. Draft version two (Ch. 2). Asheville, NC: Orelena Hawks Puckett Institute.
KAI-CHIEN TIEN EXECUTIVE FUNCTIONS Executive functions are higher-order cognitive skills and include inhibitory control, planning, organization, self-regulation, and problem solving. The development of executive functions parallels the neurodevelopment of the prefrontal regions of the brain, which are largely responsible for the neural networks that direct attention, perceptions of time and order, emotion, and response as well as the retention and utilization of memory. Deficits in the area of executive functions are evidenced by noncompliance, limited or neglect for the consequences of past actions, exaggerated or nonexistent 127
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emotional expression, difficulty with concepts such as time and money, and other difficulties related to social situations and organization. MELANIE D. HARMS EXPERIMENTAL DESIGN Experimental design is a blueprint of a procedure that enables the researcher to test his hypothesis by reaching valid conclusions about relationships between independent and dependent variables. It refers to the conceptual framework within which the experiment is conducted. JEANNE HOLVERSTOTT EXPRESSIVE LANGUAGE Expressive language is the use of language to express a thought, idea, or feeling. Typically expressive language is thought to indicate spoken language, but it also includes thoughts, ideas, or feelings that are expressed through written communication. KATHERINE E. COOK EXTENDED SCHOOL YEAR (ESY) Extended School Year (ESY) refers to the special education and related services beyond the normal school year that are provided to a child with a disability. ESY may include the provision of summer schooling or other summer programming, the continued provision of services during vacation periods, or any other number of options. According to the Individuals with Disabilities Education Act (IDEA), every student with a disability must be considered for ESY services as part of the development of their Individualized Education Program (IEP; IDEA, 2004). Eligibility for ESY is based on a variety of factors that are considered during the meetings to develop and review a student’s IEP. The most appropriate method for determining eligibility for ESY is direct, ongoing assessment of IEP objectives as they relate to the regression and recoupment a child experiences (Browder, 1987; Browder & Lentz, 1985). Typically, to determine ESY eligibility, a team asks itself how much a student would suffer a regression in skills if his or her educational services were interrupted for a period of time and how much time would be required for the student to then regain the lost skills. Other factors that the child’s team may look at include severity of the disability, degree of regression and necessary recoupment time, the ability of the parents to provide services at home, the student’s vocational needs, the ability of the student to interact with nondisabled peers, and whether the student is at a crucial or ‘‘breakthrough’’ moment in his or her learning. Examples of children with disabilities for whom ESY is especially important might include children who: (a) lose skills or behaviors relevant to their IEP goals and objectives while school is out, (b) have difficulty catching up, (c) have not yet fully learned and generalized an important skill or behavior and need help learning and practicing that skill in the formal educational setting, (d) have a disability that makes them vulnerable to interruptions in the educational program and who are at risk of withdrawing from the learning process, or (e) have a degenerative condition and need ESY to prevent or delay loss of skills or behaviors. 128
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ESY can be provided in a variety of ways depending on the needs of the individual child. A school may provide all-day schooling during the summer months, other vacation periods, or only the related services that are necessary to avoid serious regression during vacation periods. Services may be provided in a traditional classroom setting, at the student’s home, at recreational centers such as summer camps or community centers, or at any other location that is deemed appropriate to the needs of the student. Finally, services can also be provided one on one or in a group setting. REFERENCES Browder, D. (1987). Assessment of individuals with severe handicaps: An applied behavioral approach to life skills assessment. Baltimore: Brookes Publishing Co. Browder, D., & Lentz, F. E. (1985). Extended school year services: From litigation to assessment and evaluation. School Psychology Review, 14, 188–195. EJ317622. Individuals with Disabilities Education Improvement Act, 2004, Public Law 108-446. Retrieved November 27, 2004, from http://www.ed.gov/policy/speced/guid/idea/idea2004.html.
JAN L. KLEIN EXTINCTION Extinction occurs when a behavior that has a history of being reinforced with positive or negative reinforcement stops being followed by reinforcement. Once extinction begins, the likelihood is that there will be an increase in the rate of the behavior and possibly an increase in the intensity of the behavior; a decrease in the rate of the behavior should then follow. Spontaneous recovery, or the occasional display of the behavior after a period of the behavior’s absence, may occur (Cooper, Heron, & Heward, 1987). Extinction can also be a termination of sensory reinforcement, specifically, such as the reinforcement gained by some when they eat non-edible items or smell items not intended to be smelled. See also reinforcer. REFERENCE Cooper, Heron, & Heward (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall.
TARA MIHOK EYE GAZE Eye gaze is the act of directing one’s eyes toward a designated stimulus. This may be observed as an individual facing one way and his eyes glancing in another, providing the individual with the opportunity to process visual and auditory information at a pace appropriate to the individual. Because it is not uncommon for individuals on the autism spectrum to describe eye contact as painful, eye gaze serves as a replacement for eye contact. If an individual with autism demonstrates the ability to answer questions and perform actions that involve eye contact, they may be compensating with the use of eye gaze. MELANIE D. HARMS
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F FACE RECOGNITION Face recognition is a neural process that takes part in the ventral temporal cortex otherwise termed as the fusiform face area (FFA). Objects are processed in the internal gyri and based on its features, such as size, texture, color, and more. The perception of the face is processed part in features (eyes, nose, mouth, etc.) and part as a whole (one object) rather than individual features. Researchers (Boucher & Lewis, 1992; Braverman, Fein, Lucci, & Waterhouse, 1989; Hauck, Fein, Maltby, Waterhouse,& Geinstein 1998; Kline, Sparrow, de Bildt, Cicchetti, Cohen, & Volkmar, 1999; Ozonoff, Pennington, & Rogers, 1990) identify that individuals with autism and Asperger syndrome tend to activate a feature-based strategy when presented with face recognition tasks, meaning they identify a face by a feature rather than its whole presentation. The fact that individuals with autism are presenting primarily feature-based strategies to process faces lends to a deficit in processing individuals’ facial affect relative to emotional response. The inability to read the face as a whole causes individuals with autism to miss social cues and must be considered when teaching social skills. REFERENCES Boucher, J., & Lewis, V. (1992). Unfamiliar face recognition in relatively able autistic children. Journal of Child Psychology and Psychiatry, 33, 843–459. Braverman, M., Fein, D., Lucci, D., & Waterhouse, L. (1989). Affect comprehension in children with pervasive developmental disorders. Journal of Autism and Developmental Disorders, 19, 301–316. Hauck, M., Fein, D., Maltby, N., Waterhouse, L., & Geinstein, C. (1998). Memory for faces in children with autism. Child Neuropsychology, 4, 187–198. Kline, A., Sparrow, S. S., de Bildt, A., Cicchetti, D. V., Cohen, D. J., & Volkmar, F. R. (1999). A normed study of face recognition in autism and related disorders. Journal of Autism and Developmental Disorders, 29, 499–508. Ozonoff, S., Pennington, B. F., & Rogers, S. J. (1990). Are there emotion perception deficits in young autistic children? Journal of Child Psychology and Psychiatry, 31, 343–361.
MELANIE D. HARMS FACILITATED COMMUNICATION (FC) Facilitated communication (FC) refers to a form of augmentative and alternative communication (AAC) that involves providing physical as well as instructional and
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emotional support to aid individuals with autism and other developmental disabilities to communicate by pointing. The method was first described by Crossley and McDonald (1980) as a method that could be used with people with cerebral palsy. Crossley subsequently began to use facilitated communication with individuals with autism in the 1980s (Biklen, 1990; Blackman, 1999). Candidates for FC are said to include individuals who have limited or no speech or whose speech is highly disordered (e.g., echolalic) and who have unreliable pointing skills (Crossley, 1994). Crossley refers to the method as facilitated communication training (FCT), emphasizing the importance of developing the ability to ultimately communicate without physical support. Accounts of the same methodology are reported in the literature from Japan (Wakabayashi, 1973), Sweden, and the United States (Oppenheim, 1974; Schawlow and Schawlow, 1985). The recent literature provides descriptions of individuals who have achieved independent typing (Mukhopadhyay, 2000; Rubin et al., 2001) after first receiving physical support for their initial pointing. The Academy Award-nominated film, written by an FC user, Rubin, illustrates physically independent typing (Wurzburg, 2004). Other individuals who first learned to type with facilitation have learned to speak the words they are typing before and as they type (Biklen, 2005; Broderick and Kasa-Hendrickson, 2001; Broderick and Kasa-Hendrickson, in review). For people with severe speech impairments, alternative forms of communication may include use of gestures or body language, manual sign language, writing, or communication aids (e.g. headpointers, eye gaze technology on computing devices, yes/no communication boards, computers). Facilitated communication is an augmentative system for individuals whose disability affects motor performance, including effective, independent use of the hands. The method involves a communication partner (facilitator) who may aid the person in achieving useful hand function. Initially, this may mean helping the person to isolate the index finger and/or to slow the person’s pointing down by providing backward pressure under the wrist or forearm. Over time, the goal is to fade the physical support. Crossley writes, The facilitator uses his or her hand(s) to support or inhibit the aid user. The immediate aim is to allow the aid user to make choices and to communicate in a way that had been previously impossible. Practice, using a communication aid such as a picture board, speech synthesizer, or keyboard in a functional manner, is encouraged to increase the user’s physical skills and self-confidence and reduce dependency. As the student’s skills and confidence increase the amount of facilitation is reduced. (Crossley, 1994, p. 3)
The facilitated communication method involves a variety of supports, including verbal encouragement, monitoring the person’s eye contact with the target, sequencing of activities, practice sessions as well as other strategies (see Biklen, 1993, pp. 20– 23). The theoretical explanation for facilitation is that individuals with developmental disabilities, including autism, often have not only motor difficulties but also developmental dyspraxia. Dyspraxia is a neurological condition characterized by difficulty in reliably producing voluntary actions. That is, the person may be able to do something, for example, say a particular word or fetch a toy, but may not be able to do it on command. The person may be able to carry out an action automatically or spontaneously, 132
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but not intentionally. Early descriptions of dyspraxia appear in the professional practice literature (e.g., Oppenheim, 1974) as well as in the neurological literature (Maurer and Damasio, 1982). The broader topic of motor disturbance and autism has been summarized by Leary and Hill (1996). Borthwick and Crossley (1999) suggest that difficulties with physical performance, including communication, be decoupled from assessments of intellectual capacity. Facilitated communication has been called a controversial technique because, as most practitioners and researchers agree, it has been shown that a facilitator’s physical touch of the typist’s hand or arm may influence the person’s pointing, thus affecting the message. A number of studies document the problem of influence and/or difficulties in verifying authorship in facilitated communication (Bebko, Perry, & Bryson, 1996; Bomba, O’Donnell, Markowitz, & Holmes, 1996; Cabay, 1994; Crews et al., 1995; Eberlin, McConnachie, Ibel, & Volpe, 1993; Klewe, 1993; Montee, Miltenberger, & Wittrock, 1995; Moore, Donovan, Hudson, Dykstra, & Lawrence, 1993; Regal, Rooney, & Wandas, 1994; Shane & Kearns, 1994; Smith & Belcher, 1993; Szempruch & Jacobson, 1993; Wheeler, Jacobson, Paglieri, & Schwartz, 1993). The study by Wheeler and his colleagues is often cited as the classic case where researchers were able to demonstrate that some facilitators unknowingly influence facilitated typing and also that some FC users had difficulty in demonstrating their thinking competence and communication skills when tested through an apparently simple messagepassing experiment. Subsequent research on message-passing reveals contradictory evidence, however; that is, several studies have demonstrated that under controlled conditions, over multiple sessions of testing, many individuals were able to demonstrate uninfluenced authorship (Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996; Weiss, Wagner, & Bauman, 1996). Similarly and more recently, other studies, using a range of test situations as well as linguistic analysis and documentation of physical, independent-of-facilitator typing offer evidence demonstrating authorship (Broderick & Kasa-Hendrickson, 2001; Calculator & Singer, 1992; Emerson, Grayson, & Griffiths, 2001; Janzen-Wilde, Duchan & Higginbotham, 1995; Niemi & K€arn€a-Lin, 2002; Rubin et al., 2001; and Zanobini & Scopesi, 2001). In light of the controversy surrounding FC, researchers and practitioners alike have wanted to establish means by which to confirm the FC user’s authorship. The most obvious protection against influence is physically independent typing and/or speaking before and while typing. Beukelman and Mirenda (1998) write, ‘‘in regard to a small group of people around the world who began communicating through FC (facilitated communication) and are now able to type either independently or with minimal, hand-on-shoulder support . . . there can be no doubt that, for them, (facilitated communication) ‘worked,’ in that it opened the door to communication for the first time. . . . For them, the controversy has ended’’ (p. 327). Several individuals have reached the point where they can type without physical support (Blackman, 1999; Rubin et al., 2001). At the same time, there is an emerging literature relating typing to speech (Biklen & Burke, 2006; Broderick & Kasa-Hendrickson, 2001; Broderick & Kasa-Hendrickson, in review). Four documentary films feature people who have learned to communicate without physical support (Kasa-Hendrickson, Broderick, and Biklen, 2002; Mabrey, 2003; Terrill, 2000; Wurzburg, 2004). 133
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Given that progress toward and achievement of physically independent typing and/or development of functional and dialogical speech can take several years or may not appear at all, standards have been developed to guide practitioners in the use of facilitation. For example, in an article written for school personnel, Duchan and her colleagues suggested a series of steps for using any controversial methods of communication, including facilitated communication (Duchan, Calculator, Sonnenmeier, Diehl, & Cumley, 2001). Among the procedures they identify is informed consent. REFERENCES Bebko, J., Perry, A., & Bryson, S. (1996). Multiple method validation study of facilitated communication: Individual differences and subgroup results. Journal of Autism and Developmental Disabilities, 26, 43–58. Beukelman, D., & Mirenda, P. (1998). Augmentative and alternative communication: Management of severe communication disorders in children and adults. Baltimore: Brookes Publishing Co. Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review. 60, 291–314. Biklen, D. (1993). Communication unbound: How facilitated communication is challenging traditional views of autism and ability/disability. New York: Teachers College Press. Biklen, D. (2005). Autism and the myth of the person alone. New York: NYU Press. Biklen, D., & Burke, J. (2006). Presuming competence. Equity and Excellence in Education, 39, 1–10. Blackman, L. (1999) Lucy’s story: Autism & other adventures. Redcliffe, Queensland, Australia: Book in Hand. Bomba, C., O’Donnell, L., Markowitz, C., & Holmes, D. (1996). Evaluating the impact of facilitated communication on the communicative competence of fourteen students with autism. Journal of Autism and Developmental Disorders, 26, 43–58. Borthwick, C., & Crossley, R. (1999). Language and Retardation. Psychology, 10(38). Retrieved July 13, 2004, from http://psycprints.ecs.soton.ac.uk/archive/00000673/. Broderick, A., & Kasa-Hendrickson, C. (2001). ‘‘Say just one word at first’’: The emergence of reliable speech in a student labelled with autism. Journal of the Association for Persons with Severe Handicaps, 26, 13–24. Broderick, A., & Kasa-Hendrickson, C. (in review). I am so much more real than retarded: Deconstructing assumptions about speech and its relationship to competency. Equity and Excellence in Education. Cabay, M. (1994). A controlled evaluation of facilitated communication with four autistic children. Journal of Autism and Developmental Disorders, 24, 517–527. Calculator, S., & Singer, K. (1992). Preliminary validation of facilitated communication. Topics in Language Disorders, 12, ix. Cardinal D. N., Hanson, D., & Wakeham, J. (1996). An investigation of authorship in facilitated communication. Mental Retardation, 34, 231–242. Crews, W., Sanders, E., Hensley, L., Johnson, Y., Bonaventura, S., & Rhodes, R. (1995). An evaluation of facilitated communication in a group of nonverbal individuals with mental retardation. Journal of Autism and Developmental Disorders, 25, 205–213. Crossley, R. (1994). Facilitated communication training. New York: Teachers College Press. Crossley, R., & McDonald, A. (1980). Annie’s coming out. New York: Penguin Books. Duchan, J., Calculator, S., Sonnenmeier, R., Diehl, S., & Cumley, G. (2001) A framework for managing controversial practices. Language Speech and Hearing Services in Schools, 32, 133– 141. Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. (1993). ‘‘Facilitated communication’’: A failure to replicate the phenomenon. Journal of Autism and Developmental Disorders, 23, 507–529. Emerson, A., Grayson, A., & Griffiths, A. (2001). Can’t or won’t? Evidence relating to authorship in facilitated communication. International Journal of Language and Communication Disorders, 36 Suppl., 98–103.
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FACILITY-BASED EMPLOYMENT Janzen-Wilde, M., Duchan, J., & Higginbotham, D. (1995). Successful use of facilitated communication with an oral child. Journal of Speech and Hearing Research, 38, 658–676. Kasa-Hendrickson, C., Broderick, A., & Biklen, D. (Producers). (2002). Inside the edge. (Documentary Film). Syracuse, NY: Syracuse University. Klewe, L. (1993). An empirical evaluation of spelling boards as a means of communication for the multihandicapped. Journal of Autism and Developmental Disorders, 23, 559–566. Leary, M. R., & Hill, D. A. (1996). Moving on: Autism and movement disturbance. Mental Retardation, 34(1), 39–53. Mabrey, V. (Producer/Director). (2003). Breaking the silence. [Documentary]. U.S., 60 Minutes II. New York: CBS News, CBS Broadcasting, Inc. Maurer, R., & Damasio, A. R. (1982). Childhood autism from the point of view of behavioral neurology. Journal of Autism and Developmental Disorders, 12(2), 195–205. Montee, B., Miltenberger, R., & Wittrock, D. (1995). An experimental analysis of facilitated communication. Journal of Applied Behaviour Analysis, 28, 189–200. Moore, S, Donovan, B., Hudson, A., Dykstra, J., & Lawrence, J. (1993). Brief report; Evaluation of eight case studies of facilitated communication. Journal of Autism and Developmental Disorders, 23, 541–552. Mukhopadhyay, T. R. (2000). Beyond the silence: My life, the world and autism. London: National Autistic Society. Niemi, J., & K€arn€a-Lin, E. (2002). Grammar and lexicon in facilitated communication: A linguistic authorship analysis of a Finnish case. Mental Retardation 40, 347–357. Oppenheim, R. (1974). Effective teaching methods for autistic children. Springfield, IL: Charles Thomas. Regal, R., Rooney, J., & Wandas, T. (1994). Facilitated communication: An experimental evaluation. Journal of Autism and Developmental Disorders, 24, 345–355. Rubin, S., Biklen, D., Kasa-Hendrickson, C., Kluth, P., Cardinal, D., & Broderick, A. (2001). Independence, participation, and the meaning of intellectual ability. Disability & Society, 16, 415–429. Schawlow, A. T., & Schawlow A. L. (1985). The endless search for help. In M. R. Brady & P. Gunther (Eds.), Integrating moderately and severely handicapped learners: Strategies that work (pp. 5–15). Springfield, IL: Charles Thomas. Shane, H., & Kearns, K. (1994). An examination of the role of the facilitator in ‘‘facilitated communication.’’ American Journal of Speech-Language Pathology, September, 48–54. Sheehan, C., & Matuozzi, R. (1996). Investigation of the validity of facilitated communication through the disclosure of unknown information. Mental Retardation, 34, 94–107. Smith, M., & Belcher, R. (1993). Brief report: facilitated communication with adults with autism. Journal of Autism and Developmental Disorders, 23, 175. Szempruch, J., & Jacobson, J. (1993). Evaluating facilitated communications of people with developmental disabilities. Research in Developmental Disabilities, 14, 253–264. Terrill, C. (Producer/Director). (2000). Inside story: Tito’s story. [Documentary]. England: BBC. Wakabayashi, S. (1973). A case of infantile autism who became able to communicate by writing. Psychiatria et Neurologia Japonica, 75, 339–357. Weiss, M., Wagner, S., & Bauman, M. (1996). A validated case study of facilitated communication. Mental Retardation, 34, 220–230. Wheeler, D., Jacobson, J., Paglieri, R., & Schwartz, A. (1993). An experimental assessment of facilitated communication. Mental Retardation, 31, 49–60. Wurzburg, G. (Producer/Director) (2004). Autism is a world [Documentary Film]. Atlanta: CNN. Zanobini, M., & Scopesi, A. (2001). La comunicazione facilitata in un bambino autistico, Psicologia Clinica dello Sviluppo, 5, 395–421.
DOUGLAS BIKLEN FACILITY-BASED EMPLOYMENT Facility-based employment is a good choice for individuals who have more severely challenged job skills or who require intensive levels of supervision to complete the 135
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required tasks of their job. This type of employment is often found at vocational rehabilitation agencies or private nonprofit community organizations whose services include supported employment arrangements. Because employment is not competitively based for participants in the program, the benefits of such an environment would be successful socialization, active participation in work activities, and intensive support for all types of skill deficits. Eligibility assessments include IQ, work readiness, and general functioning level. Availability of these programs may be limited because of funding and low attrition rates unless the program operates for specific periods of time or sessions in order to accommodate a larger volume of participants. Since many of these programs have been operating in some cases for decades, they should be investigated carefully before committing to participation at any facility. Be sure to look for a program that is comprehensive and nurturing with a skilled staff that insists on a positive environment. SHERRY MOYER FADING In order to increase generalization to a natural setting, fading of unnatural antecedent stimuli should take place. Fading is used as a part of a technique called transfer of stimulus control. The teacher presents the unnatural antecedent stimulus (or teaching stimulus) paired with the natural stimulus to replace the teaching stimulus with the stimulus in the natural environment. The teaching stimulus should be gradually faded, allowing the natural stimulus to control the person’s behavior. The stimulus may be faded physically, spatially, audibly, and visually (Cooper, Heron, & Heward, 1987). For example, a teacher could use fading when teaching a student that when the bell rings, they are to leave the classroom. At first, the teacher may need to physically prompt the student to move when the bell rings. This physical prompt, in the absence of the bell ringing, is the student’s stimulus for his behavior of getting up and moving out of the classroom. In the presence of the bell, the full physical prompt with two hands can be faded to a light pull on the arm and then to a touch on the arm. The end is that the student responds to the natural stimulus of the bell without any physical prompting. See also antecedent; stimuli. REFERENCE Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall.
TARA MIHOK FALSE-BELIEF PARADIGM The False-Belief Paradigm is a task designed to assess theory of mind (ToM) development. Theory of mind describes an area of research that focuses on a child’s ability to understand mental concepts such as belief, desire, the difference between appearance and reality, and the existence of other minds. The classic false-belief paradigm presents a child with two dolls, two boxes (one red and one green), and a marble, all of which are in a single miniature scene. One doll puts the marble in the green box, so that it is hidden, and then departs. While the first doll is gone, the second doll 136
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removes the marble from the green box and puts it in the red box. The first doll then returns, and the child is asked: ‘‘Where will the first doll look for the marble?’’ Children younger than four typically reply that the doll will look in the red box, the actual location of the marble. They are unable to understand that the doll might have a false belief, one that does not correspond to reality. After the age of four, children begin to give the correct response: the doll will look in the green box, where it had last seen the marble. Individuals with autism of all ages have difficulty with the falsebelief paradigm due to difficulties with understanding and reading the emotions and thoughts of others. JEANNE HOLVERSTOTT FAMILY ASSESSMENT INTERVIEW The family assessment interview is part of the family assessment process (FAP) designed to match families with the appropriate services for their children and empower the families based on their individual strengths. Upon referral, a family assessment specialist meets with the members of the family for an initial interview and to conduct the necessary assessments. During this meeting, the specialist conducts a family assessment interview in order to facilitate an exchange of feelings and experiences, examine family challenges from multiple perspectives, and enhance communication between caretakers and youths. Depending on the needs of the family (i.e., mediation, crisis management), the specialist will compile this information and refer the family to the appropriate service provider (i.e., community-based service, mental health evaluation, mediation, designated assessment service, or other applicable service). JEANNE HOLVERSTOTT FAMILY EDUCATIONAL RIGHTS AND PRIVACY ACT (FERPA) The Family Educational Rights and Privacy Act, also known as FERPA, is a federal law created in 1974 to protect students’ educational records. The Individuals with Disabilities Education Act (IDEA, 1997) and the Section 504 of the Rehabilitation Act of 1973 also address these areas (FERPA, 1974). The law applies to all educational institutions that receive funding from the United States Department of Education, including public schools, colleges, and universities, as well as many private schools that also receive some form of funding. Institutions may have their funding removed if they fail to follow FERPA regulations (FERPA, 1974). FERPA was created for three specific reasons. First, schools were denying parent requests to access records while government agencies and prospective employers were allowed to see the records. Second, information contained in school records was not always factual, education-based, or objective. Third, access to student records varied greatly from state to state and was based on common law practices, case law, and local policies (Copenhaver, 2002). FERPA designates the requirements for keeping educational records. Personal identifiable records must be kept confidential. All schools or educational entities are required by FERPA to follow the same basic guidelines. Districts must adopt a written policy designating the rules for obtaining and keeping educational records and 137
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following procedures that meet FERPA standards. Permanent files should be maintained on all students (Copenhaver, 2002). Students with special education services should have three separate files, one file for student information such as immunizations and discipline referrals, one for Individualized Education Programs (IEP) and other special educations forms, and a file for the special education teacher that holds student information. Schools must keep a logbook of who accesses the files. Only school personnel whose titles are given access by the district’s educational records policy may see the records. These may include administrators, therapists, teachers, medical staff, social workers, school law enforcement, a parent serving official school duty, and board members (FERPA, 1974). FERPA gives parents the right to review their child’s education records. Education records relate directly to a student, contain personal information, and may include information recorded in a variety of formats including handwritten, tape, film, or print (Copenhaver, 2002). When requested, a school district must disclose the types of records they keep (FERPA, 1974). The institution must make the documents available within 45 days of receiving the request or within the school district’s set limits. However, schools are not required to provide copies. Noncustodial parents may have access to the files unless that right has been removed due to state order, court order, or other legally binding document (FERPA, 1974). When the student is 18 or attends college, these rights transfer to them. At this point of transfer, students are referred to as ‘‘eligible students’’ (Holbum, 2003). Parents or eligible students can request that a school amend records they believe to be incorrect (Holbum, 2003). If the school district does not amend the records, parents or eligible students may request a hearing. If the hearing is unsuccessful, parents or eligible students may place a statement explaining their views of the situation into the permanent education records. The statement from parents or eligible students must be included with the records it pertains to at each disclosure or time the file is viewed. Parents or eligible students who believe that an institution is not correctly applying FERPA have the right to file a complaint with The U.S. Department of Education. Complaints should be directed to the Family Policy Compliance Office of the Department of Education. Schools may release information regarding students when they are given written consent by the parent or eligible student. Exceptions are release within the public school system, release of directory information as outlined by their district policy, or in emergency or health-related situations. Parents and students must be notified each year of their rights pertaining to education records under FERPA. Parents should be provided information on what will be disclosed in directory information and have the opportunity to choose not to participate on a yearly basis. The law does not specify how the parents will be notified. Personal notes made by staff members and maintained by that person and not shared with others are exempt from parental disclosure. These personal journals are not required to be shared with parents or eligible students under FERPA requirements. These records do not include health and treatment information for persons age 18 and over that are maintained by health care professionals (Copenhaver, 2002). Also, records cannot be released to Medicaid for benefit claims without parental consent (Ahern, 2002). 138
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There are specific requirements that must be fulfilled before disclosing information that is not available under the exceptions of the law such as ‘‘directory’’ information. A parent or a student who has become eligible must provide a written and signed consent form before personal information can be released. The form must state what documents are to be disclosed, why the documents are being disclosed, and who specifically the documents are being disclosed to. The institution will provide a copy of the information disclosed if the eligible student or parent requests it (FERPA, 1974). The goal of The Family Education Rights and Privacy Act (1974) is to protect the confidentiality of students and families while providing information as appropriate. Interpretation of law may affect how school districts in various areas approach the law. This may in turn reflect how much information is released. Often districts are overcautious in their release of information (Center for Mental Health in Schools, 2002). Even with the variance of interpretation between education institutions, the outcome is still realized; education records are protected and privacy is maintained. REFERENCES Ahern, E. (2002). Medicaid: Parent consent issues. Quick turn around (QTA). Alexandria, VA: National Association of State Directors of Special Education. Center for Mental Health in Schools. (2002). Confidentiality: A center quick training aid. University of California–Los Angeles (UCLA). Copenhaver, J. (2002). Primer for Maintaining Accurate Special Education Records and Meeting Confidentiality Requirements when Serving Children with Disabilities—Family Educational Rights and Privacy Act (FERPA). Utah State University. The Family Educational Rights and Privacy Act of 1974 (FERPA). Public Law No. 93-380 (20 U.S.C. § 1232g; 34 CFR Part 99). Holbum, T. (2003). College student records: Legal issues, privacy, and security concerns. (ERIC Document Reproduction Service ED 480467). Individuals with Disabilities Education Act Reauthorization of 1997. Public Law No. 105–17 (1997).
FURTHER INFORMATION Brookshire, R., & Klotz, J. (2002). Selected Teachers’ Perceptions of Special Education Laws. Paper presented at the annual conference of the Mid-South Educational Research Association. Chattanooga, Tennessee. Doyle, S. L. (2002). FERPA: What exactly is an educational record? (ERIC Document Reproduction Service ED 473342). O’Donnell, M. L. (2003). FERPA: Only a piece of the privacy puzzle. Student Rights Journal of College and University Law, 29(3) 679–717.
VALERIE JANKE REXIN
FAST FORWORD Fast ForWord is an intervention for children with language, memory and processing problems. The intervention involves speech sound discrimination exercises, a two-tone sequencing exercise and receptive language exercises. Novel to their intervention was the application of neuroscience research on brain plasticity and auditory processing problems stemming from over 20 years of neuroscience research. The exercises were designed to build the cognitive skills essential for learning language and learning to read: memory, attention, processing, and sequencing. Although many of the tasks they introduced were similar to those used conventionally by speech and language pathologists to treat language and processing disorders, the Tallal/ 139
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Merzenich intervention was different because the speech stimuli in the exercises were acoustically enhanced to conform to the perceptual needs of children with auditory processing problems. Further, children were asked to practice the exercises 2 hours a day, 5 days a week, for 4 to 6 weeks. This intense training protocol stemmed from research by Merzenich et al. (1996) showing that four characteristics of training maximize brain reorganization: (a) frequency of stimuli presentation, (b) adaptability, (c) simultaneous stimulation of several cognitive domains, and (d) timely motivation. After the initial field trial of the intervention with almost 500 children, the intervention was named Fast ForWord. Today there are nine Fast ForWord products, all based on the same neuroscience research. The original intervention is now called Fast ForWord Language. The additional Fast ForWord products are designed around the same neuroscience principles to build the same cognitive skills of memory, attention, processing, and sequencing, but in the context of reading. The results of the national field trial instituted to test the efficacy of the new intervention revealed that the average language gain nationwide was almost two standard deviations (representing a year and one-half growth in language skills) in most cases, achieved after 4 weeks of training. Among the children who participated in the national field trial were many who had diagnoses of autism spectrum disorders (ASD). Although many of the children with ASD had more severe language and processing issues than the average Fast ForWord participant, they made almost the same gains overall as the children for whom the intervention had been designed—namely, those with specific language impairment (Tallal et al., 1997). WHAT IS A NEUROSCIENCE-BASED PERSPECTIVE AND HOW DOES IT HELP INTERVENTION WITH AUTISM SPECTRUM DISORDERS? Researchers have speculated for years that ASD must have something to do with brain processing differences. However, despite many studies of the brains of individuals with ASD, there has been little consensus as to the ways in which the brain might be organized differently in these individuals. Bauman and Kemper (1994) studied brain cells of persons with autism who have died of natural causes, noting that while there are abnormalities in the brain cells in some of the older parts of the brain that regulate movement and emotion, brain cells important for thought and language (cells in the outer brain parts, the cortex) appeared normal. Herbert and her associates worked to confirm the hypothesis that children on the autism spectrum may have intact cortical brain cells important for thought, language, and reasoning, but those cells may be organized differently, specifically in the way they communicate with each may pose a problem. Brain cells in the cortex have connecting fibers that are ‘‘wrapped’’ with an insulating sheet called myelin. Myelin is important because it allows brain cells to ‘‘talk’’ to each other using very efficient connections. According to Herbert, Ziegler, Makris, et al. (2004) and Herbert, Ziegler, Deutsch, et al. (2004), myelin begins to insulate brain cell connections at very specific times during the development of the brain. These researchers have found that in children with developmental language disorders and children with Asperger syndrome, the neuron pathways may get ‘‘wrapped’’ too soon or in unusual ways. This may cause the brain to become ‘‘hardwired’’ while the brain is still immature and not well organized. Herbert hypothesizes that this could interfere with the child’s ability to process language and learn other higher cognitive
IN
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tasks easily. Her research using MRI scans suggests that the brains of children with Asperger syndrome and developmental language disorders have the same number of cortical brain cells as those of children who do not exhibit autism spectrum disorders, but the connections between the brain cells are less efficiently organized. Although research by Herbert, Ziegler, Makris, et al. (2004) and Herbert, Ziegler, Deutsch, et al. (2004) needs to be verified by other studies before firm conclusions may be drawn, it appears that if children with ASD demonstrate immature or inefficient connections, those are malleable in the human brain. Neuroscientists have demonstrated that intensive interventions can reroute brain connections, even in adults. The ability to Fast ForWord Language to normalize brain organization has been investigated in two studies (Temple et al., 2000; Temple et al., 2003). This research with children and adults with dyslexia, using MRI to create images of the brain working before and after Fast ForWord Language intervention, revealed neurological wiring changes in children and adults with dyslexia and associated auditory processing problems. Further, these investigations demonstrated that brain function could be normalized in 4 to 6 weeks. HOW DO FAST FORWORD PRODUCTS DIFFER FROM OTHER INTERVENTIONS FOR CHILDREN ON THE AUTISM SPECTRUM? Because they were developed specifically for improving receptive language, memory, attention, processing, and sequencing the Fast ForWord products can augment other interventions for ASD that address behavioral and interaction patterns by filling in the auditory, language, and cognitive gaps that these children may experience. In a retrospective study of 100 children with ASD who used Fast ForWord Language, Melzer and Poglitsch (1999) reported that many therapists successfully implemented Fast ForWord Language in conjunction with sensori-integration modifications as part of an Applied Behavior Analysis (ABA) or naturalistic intervention programs. The authors noted that although there was substantial variability in the quantity and quality of gains realized as a result of Fast ForWord Language intervention, almost all of the children who complied with the intervention schedule showed enhanced attentional, receptive language, and expressive formulation skills. Children on the autism spectrum may require a significantly longer training period than children with other language or reading disorders, but the gains are significant. REFERENCES Bauman, M. L., & Kemper, T. L. (1994). The neurobiology of autism. Baltimore: Johns Hopkins University Press. Herbert, M. R., Ziegler, D. A., Makris, N., Filipek, P. A., Kemper, T. L., Normandin, J. J., et al. (2004). Localization of white matter volume increase in autism and developmental language disorder. Annals of Neurology, 55, 530–540. Herbert, M. R., Ziegler, D. A., Deutsch, C. K., O’Brien, L. M., Kennedy, D. N., Filipek, P. A., et al. (2004). Brain asymmetries in autism and developmental language disorder: A nested whole-brain analysis. Brain Advance Access, November 24, 2004. Melzer, M., & Poglitsch, G. (1999). Use of Fast ForWord with children who have autism spectrum disorders. Paper presented at the annual convention of the American Speech-Language Hearing Association, San Antonio, TX. Merzenich, M. M., Jenkins, W. M., Johnston, P., Schreiner, C. E., Miller, S. L., & Tallal, P. (1996). Temporal processing deficits of language-learning impaired children ameliorated by training. Science, 271, 77–80.
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FEINGOLD DIET Tallal, P., Saunders, G., Miller, S., Jenkins, W., Protopapas, A., & Merzenich, M. M. (1997). Rapid training-driven improvement in autistic and other PDD children. Society for Neuroscience, 23, 490–491. Temple, E., Poldrack, R. A., Protopapas, A., Nagarajan, S., Salz, T., Tallal, P., et al. (2000). Disruption of the neural response to rapid acoustic stimuli in dyslexia: Evidence from functional MRI. Proceedings of the National Academy of Sciences, 97(25), 13907– 13912. Temple, E., Deutsch, G., Poldrack, R., Miller, S., Tallal, P., & Merzenich, M. (2003). Neural deficits in children with dyslexia ameliorated by behavioral remediation: Evidence from functional MRI. Proceedings of the National Academy of Sciences, 100(5), 2860–2865.
MARTHA S. BURNS
AND
PAULA TALLAL
FEINGOLD DIET The Feingold diet was developed in 1973 by Benjamin Feingold, MD, a pediatric allergist, who proposed that salicylates, artificial colors, and artificial flavors caused hyperactivity in children. To treat or prevent this condition, Feingold suggested a diet that was free of such chemicals. Feingold also advised individuals to avoid certain over-the-counter and prescription drugs and to limit the purchases of mouthwash, toothpaste, cough drops, perfume, and various other nonfood products. There is no empirical evidence to support the efficacy of the Feingold diet. JEANNE HOLVERSTOTT FIGURATIVE LANGUAGE Figurative language or speech contains specific words that are intended by the speaker to create interesting images. Figurative language provides a new way of looking at or understanding a message by making comparisons of different items to demonstrate the unique similarities. Figurative language is used to enhance the communicative meaning or message of the speaker. KATHERINE E. COOK FINE MOTOR SKILLS Fine motor skills describe a movement that requires the use and coordination of the smaller muscles of the body. Examples of fine motor skills include writing, cutting with scissors, or buttoning a shirt. KELLY M. PRESTIA FLOOR TIME. See Developmental Individual-Difference Relation-Based Intervention FLUENCY Fluency is the normal rhythm and timing of words and phrases including variations in speed and pauses. A fluency disorder is defined as an interruption in the flow of spoken language by atypical rate, rhythm, and repetitions. Stuttering is the most common fluency disorder characterized by repetitions of consonant or vowel sounds as the speaker tries to express a thought, idea, or feeling. KATHERINE E. COOK 142
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FOOD INTOLERANCE/SENSITIVITIES. See See Elimination Diet and Food Sensitivities FOUR STEPS OF COMMUNICATION Communication, verbal or nonverbal, is an ever-present complex process when relating to others. To help we realize how to begin the process of evaluating and treating persons who have difficulty sharing space with others/communicating effectively. The four steps of communication were developed by Winner (2002) to help understand how the communicative process unfolds. It is in this same order that we begin to address teaching social thinking skills to persons with near-normal to way-abovenormal intelligence who also have social cognitive deficits. Most students with social cognitive deficits need to work on all four of these steps, meaning that we have to do far more with them than simply practice teaching them to participate in a conversation while sitting at a table. Step 1: Thinking about Others and What They Are Thinking about Us We THINK about who we are near or who we want to talk to or play with. We are aware people have little thoughts about all the people around them, and that we have those same types of thoughts. We even monitor our own behavior based on what we think other people might be thinking of us! We consider what we know about the other person and what they like to do in order to keep the other person feeling like we are aware of them or thinking about them. Step 2: Establishing a Physical Presence When we desire to communicate or ‘‘hang out’’ with someone, while thinking about them, we have to establish a physical presence to show that person that we would like to talk to the person or just be with them. Our physical presence can include standing close enough to the person (often about an arm’s length away), having our shoulders turned towards them, and keeping our body relaxed to move easily to include other people or to move away from a person as needed. Our physical presence usually communicates intent, which helps to kick off communication. For example, if you are thinking about me, and you want to hang out with me but you are standing about four feet away and looking around but wishing I would come to you, you have failed to establish a physical presence for me. I would not be able to ‘‘read your intention’’ to communicate with me. Step 3: ‘‘Thinking with Your Eyes’’ As we are thinking about the person we desire to communicate with and we establish physical presence, our intention to communicate is only explicitly clear once we have established eye-contact with the other person. This is the third step, since it is possible to engage in the previous two steps without using eye-contact, but communication or sharing space effectively is usually not functional without using our eyes, not only to show someone we are interested in talking, but to also watch the physical movements and facial expression of the others to determine their intentions, feelings, and needs, as well. Step 4: Using Language to Relate to Others While language is undisputedly central to all language-based communication, it is often not effective or functional if the first three steps are not in place. For example, if a student comes up to you to tell you all the details about the Titanic, and he or she talks endlessly without considering what you are thinking about and without establishing eyecontact, it may be interesting to listen to (if you are an adult), but this is not truly communication; it should better be described as ‘‘downloading’’ information. Language use in communication requires that language users constantly consider the thoughts, feelings, prior knowledge, experiences, intentions, and needs of the communicative partner. Each
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FOUR STEPS OF PERSPECTIVE TAKING partner has to work to regulate their language to meet the needs of the listener while also conveying the message that helps them to add their own thoughts to the interaction. Effective language-based communication requires students to ask questions to others about other people, produce supportive responses, add their own thoughts by connecting their experiences or thoughts to what other people are saying, and so forth.
REFERENCE Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Michelle Garcia Winner.
FURTHER INFORMATION Winner, M. (2005). Worksheets! For teaching social thinking and related skills. San Jose, CA: Michelle Garcia Winner.
MICHELLE GARCIA WINNER
AND JAMIE
RIVETTS
FOUR STEPS OF PERSPECTIVE TAKING Perspective taking should occur each time we share space with one or more people; it is as important when we are not talking to people as when we are engaged in an active discussion/conversation. One definition of perspective taking is the ability to read other people’s thoughts, emotions, motives, intentions, belief systems, prior knowledge and experiences, and personality to gain insight into the communicative intent of the person conveying the message. Perspective taking is critical for people to work effectively together in groups; it is at this time that all people have to regulate their communication around their own needs as well as the needs of others. The four steps of perspective taking were developed by Winner for us to better understand how a ‘‘thought’’ about another person quickly turns into behavioral regulation (2002). We can use the following four steps of perspective taking not only for us adults to better assess where a child may be struggling, but also as a teaching tool for older students with Asperger syndrome and like diagnoses, to help them understand more concretely the abstract process of perspective taking. Step 1: I think about you and you have a thought about me, when we are just sharing space (e.g., when sharing an elevator) or when we are talking or planning to talk. Step 2: I try to determine why you are near me. What is your motive/intention for being near me or thinking about me? Are we just in the same place at the same time by coincidence, or do you plan to harm or trick me? Step 3: Since I realize you are having a thought about me, I wonder what you are thinking about me. Step 4: As I try and figure out what you are thinking about me, I monitor and possibly regulate my behavior to keep you thinking about me the way I want you to think about me.
For example: When I am on an elevator by myself, I will often look in the mirror, fix my clothing, makeup, etc. As soon as you get on the elevator, I realize you are having a thought about me so I stop looking in the mirror and I face the door (Steps 1, 3, and 4); I also may keep an eye on you to make sure you are just trying to get to another floor on the elevator and not trying to steal my wallet (Step 2). REFERENCE Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Michelle Garcia Winner.
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FURTHER INFORMATION Winner, M. (2005). Think social! A social thinking curriculum for school aged students. San Jose, CA: Michelle Garcia Winner.
MICHELLE GARCIA WINNER
AND JAMIE
RIVETTS
FRAGILE X SYNDROME Fragile X syndrome (fragile X) is the most common inherited form of mental retardation. A single mutated gene, which is found on the X chromosome and passed down from one generation to the next, causes fragile X. The body’s building blocks are made up of proteins that perform specific jobs needed for the body’s chemical functions and for the structure of organs and tissues. Fragile X occurs because a specific gene, the FMR1 gene, is not able to make usable amounts of a specific protein. The amount of fragile X mental retardation protein (FMRP) determines how mild or severe the symptoms of fragile X are in a body. The less FMRP levels in the body, the more severe the symptoms. The gene that causes fragile X was discovered in 1991 by scientists at the National Institute of Child Health and Human Development (NICHD). International researchers continue to study fragile X and are working to find medical and preventative treatments as well as effective therapeutic strategies for the syndrome. The range of physical signs and symptoms varies. Often infants and children with fragile X have no discernable features from other children until they reach puberty. Some young children may have very soft skin, a broad forehead, or a bit larger head circumference than their typical counterparts. At puberty, however, more discernable features often develop. These might include a longer face or jaw, and large ears. Often individuals with fragile X do not grow as tall as might be expected based on the height of others in their family. Many males develop what is called macro-orchidism, or enlarged testicles, which does not affect sexual development and is not caused by a hormonal imbalance. Other symptoms that might occur in fragile X are caused by loose or weak connective tissues. This can be manifested by loose or flexible joints, flat feet, and the ability to extend thumb, knee, and elbow joints further than what is considered normal. Sometimes weak connective tissues can cause a heart murmur or mitral valve prolapse. Older individuals with fragile X syndrome may develop hand tremors or have difficulty walking. Females with fragile X are affected differently than males. Since females have two X chromosomes, they will have only one FMRP1 gene that is mutated and another that is normal. Cells randomly choose which gene on a chromosome will be used to make proteins, so if the gene that makes normal amounts of the FMRP is active, then the female, even with a full mutation, will be able to make some of the needed protein. Therefore, symptoms in females with fragile X are less severe and occur less often than symptoms in males. One significant effect of a permutation form of the fragile X gene in females is called premature ovarian failure (POF). It is found in 16 to 19 percent of females with the permutation gene. Women with POF stop ovarian function very early, often before their forties, and sometimes as early as their twenties (the average age for menopause in normal females is 51). The possibility of early menopause can be a significant issue for women considering pregnancy, so early knowledge of the gene is a must. 145
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Anxiety, social fears, and sensory issues are characteristic of individuals with fragile X. They may have difficulty in social situations or meeting new people, and therefore avoid situations that might make them nervous, anxious, or uncomfortable. They may be oversensitive to sounds, lights, temperatures, textures, or movement. Transitions or a change in routine can sometimes be difficult. Often the individual’s reaction to overstimulation, anxiety, or sensory input can be so heightened that his behavior can potentially escalate to aggression or self-injurious behavior. The anxiety level in males with fragile X appears to last longer than in their typical peers. There is a strong association of fragile X and autism. Children with fragile X exhibit many of the same characteristics as those with autism, but do not necessarily meet the full criteria of the Diagnostic and Statistical Manual of Mental Disorders (DSW-IVTR; APA, 2000) definition. In recent years, researchers have found that a significant subgroup of children with fragile X also have autism. Bailey found that 25 percent of boys with fragile X met the criteria of autism using the Childhood Autism Rating Scale (Bailey, Hatton, Skinner, & Mesibov, 2001), and that they characteristically appeared very similar to children with autism without fragile X. Rogers, Wehner, and Hagerman (2001) found 15 to 33 percent of the children they evaluated with fragile X syndrome met the criteria for autism. Further research is needed to determine the causal genetic factors of fragile X to autism. At this time, fragile X is the most common genetically known cause of autism. REFERENCES American Psychiatric Association (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Bailey, D. B., Hatton, D. D., Skinner, M., & Mesibov, G. (2001). Autistic behavior, FMR1 protein, and developmental trajectories in young males with fragile X syndrome. Journal of Autism and Developmental Disorders, 31(2), 165–174. National Institute of Child Health & Human Development. (2006). What are the signs and symptoms of Fragile X syndrome? Retrieved November 16, 2006, from www.nichd.nih.gov/ publicatios/pubs/fragileX/sub8.htm. Rogers, S. J., Wehner, E. A., & Hagerman, R. (2001). The behavioral phenotype in fragile X: Symptoms of autism in very young children with fragile X syndrome, idiopathic autism, and other developmental disorders. Journal of Developmental & Behavioral Pediatrics, 22(6), 409–417.
FURTHER INFORMATION Bailey, D. B., Jr., Hatton, D. D., Mesibov, G., Ament, N., & Skinner, M. (2000). Early development, temperament and functional impairment in autism and fragile X syndrome. Journal of Autism and Developmental Disorders, 30(1), 49–59. The National Fragile X Foundation. (February 3, 2006). How do the behaviors seen in persons with Fragile X relate to those seen in autism? Retrieved August 11, 2006, from www.fragilex.org/html/ autism.htm.
ANN PILEWSKIE FREE AND APPROPRIATE PUBLIC EDUCATION (FAPE) As part of the Individuals with Disabilities Education Act, Part B, every school district must provide a free and appropriate public education (FAPE) for children with disabilities. By definition, all special education and related services should be provided to the student with a disability at no cost to his or her parents. In general, all students of school age are provided a free and appropriate public education. 146
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The Individuals with Disabilities Education Act defines FAPE as special education and related services that (a) have been provided at public expense without charge to the parents; (b) meet the standards of the state educational agency; (c) include an appropriate preschool, elementary, or secondary school education in the state involved; and (d) are provided in conformity with the student’s individualized education program (20 U.S.C.A. § 1401(8)) [2004]. IDEA defines FAPE but does not set any requirements or standards, which has troubled many school districts and parents. The definition of what is appropriate education has led many families to the federal court to decide what is appropriate for their student’s education. FAPE is best defined as an individualized program designed to meet the child’s unique needs and from which the child receives educational benefit. The definition of FAPE first came under scrutiny with Board of Education of the Hendrick Hudson School District v. Rowley (1982). This case reached the U.S. Supreme Court, with the court developing a two-part test to determine if a school district provided a free and appropriate public education. The first part of the test verified that the procedural requirements of IDEA were followed during the development of the IEP. The second part determined if the IEP developed adhered to all of the law’s procedural requirements and was reasonably calculated to enable the student to receive educational benefits. The Supreme Court decided that the school district did adhere to both parts of the test and that an appropriate education did not mean providing the student with a disability the best education possible (Fielder, 2000). Many court cases followed Rowley regarding autism spectrum disorders and specific instructional approaches or methodologies. The courts have consistently declared that as long as an appropriate educational program is provided, the choice of approach or methodology is within the school’s discretion. That being said, if the student’s parents can prove that the school’s methodology is not producing educational benefits, then some courts have ordered school districts to use a specific methodology. This exception only applied to cases where the methodology requested showed educational results and the school’s methodology did not. Placements of students with disabilities have also been questioned when discussing FAPE. According to IDEA, school districts must follow specific requirements in determining placement. These requirements are as follows: ¥ The placement must be based on the student’s Individualized Education Program (IEP) and be designed as the most appropriate setting where the required special education and related services can be delivered (IDEA Regulations, 34 C.F.R. Sec. 300. 552(a)(2)).
The educational placement must be determined at least annually (IDEA Regulations, 34 C.F.R. Sec 300. 552(a)(1)). ¥ The placement must comply with the least restrictive environment requirement (IDEA Regulations, 34 C.F.R. Sec. 300. 553(a)(4)).
Any placement of a student with a disability must be made by the IEP team after the IEP is written. Disagreements regarding placement in an IEP by parents may go to mediation or due process if the school and parents cannot come to an agreement. 147
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REFERENCES Board of Education of the Hendrick Hudson School District v. Rowley, 458 U.S. 176 (1982). Fiedler, C. R. (2000). Making a difference: Advocacy competencies for special education professionals. Boston: Allyn and Bacon. Individuals with Disabilities Education Act, 20 U.S.C.A. § 1401(8) (2002). U.S. Department of Education. (1992). IDEA Part B Regulations, 34 C.F.R. Sections 300. 500– 662.
MELISSA L. TRAUTMAN FUNCTIONAL ANALYSIS SCREENING TOOL (FAST) The Functional Analysis Screening Tool (FAST; Iwata & DeLeon, 1996) is a behavior rating scale used to identify factors that may influence the occurrence of behavior problems. Designed to be a component of a comprehensive functional analysis, the FAST’s 18 items are yes-no questions completed by a parent, therapist, teacher, or residential staff member. The ‘‘yes’’ items correspond with ‘‘likely maintaining variables,’’ which include social reinforcement (attention/preferred items), social reinforcement (escape), automatic reinforcement (sensory stimulation), and automatic reinforcement (pain attenuation). REFERENCE Iwata, B. & DeLeon, I. G (1996). The functional analysis screening tool. Gainesville, FL: The Florida Center on Self-Injury.
JEANNE HOLVERSTOTT FUNCTIONAL BEHAVIOR ANALYSIS Functional behavior analysis is a technique for analyzing relationships between behavior and the environment (Pierce & Cheney, 2004). Functional behavior analysis involves manipulating antecedents (before) and consequences (after) in a highly controlled environment to determine their controlling functions (Mace, Lalli, & Lalli, 1991; Gresham, Watson, & Skinner, 2001; Pierce & Cheney, 2004). Before conducting functional behavior analysis, information needs to be gathered through observation or interview, and hypotheses should be generated. The purpose of conducting functional analysis is to (a) define problem behaviors, (b) find stimuli that extinguish problem behaviors, and (c) identify functions of problem behaviors (Foster-Johnson & Dunlap, 1993; Horner & Carr, 1997; O’Neill, Homer, Albin, Sprague, Storey, et al., 1997). Functional behavior analysis is not generally used in school settings, and it is reserved for the most severe behaviors under the most controlled conditions since it requires intensive time and controlled conditions (Bowen, Jenson, & Clark, 2004). REFERENCES Bowen, J. M., Jenson, W. R., & Clark, E. (2004). School-based interventions for students with behavior problems. New York: Springer. Foster-Johnson, L., & Dunlap, G. (1993). Using functional assessment to develop effective individualized intervention for challenging behaviors. Teaching Exceptional Children, 25, 44–50. Gresham, F. M., Watson, T. S., & Skinner, C. H. (2001). Functional behavioral assessment: Principles, procedures, and future directions. School Psychology Review, 30, 156–172. Horner, R. H., & Carr, E. G. (1997). Behavioral support for students with severe disabilities: Functional assessment and comprehensive intervention. Journal of Special Education, 31, 84– 104.
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FUNCTIONAL GOALS Mace, F. C., Lalli, J. S., & Lalli, E. P. (1991). Functional analysis and treatment of aberrant behavior. Research in Developmental Disabilities, 12, 155–180. O’Neill, R. E., Homer, R. H., Albin, R. W., Sprague, J. R., Storey, K., & Newton, J. S. (1997). Functional assessment and program development for problem behavior: A practical handbook. Belmont, CA: Wadsworth. Pierce, W. D., & Cheney, C. D. (2004). Behavior analysis and learning (3rd ed.). Mahwah, NJ: Lawrence Erlbaum Associates.
HYE RAN PARK FUNCTIONAL BEHAVIOR ASSESSMENT (FBA) Functional behavior assessment is based on research in applied behavior analysis. It provides a method of examining relationships between and generating hypotheses about the antecedents and consequences that trigger or maintain behaviors (Dunlap et al., 1993; Ervin et al., 2000; Iwata, Vollmer, & Zarcone, 1990). The purpose of conducting an FBA is to determine (a) discriminative stimuli or antecedents that elicit problem behavior, and (b) the reinforcing consequences that maintain the problem behavior (Erickson, Stage, & Nelson, 2006). The FBA consists of two stages. The first stage consists of teacher interviews, direct observation/descriptive assessment, and hypothesis development. The second stage includes functional analysis to test the conditions that are hypothesized to be maintaining the students’ disruptive behaviors, and potential interventions based on the conditions that maintain appropriate behavior (Ervin et al., 2000; Kamps et al., 1995). REFERENCES Dunlap, G., Kern, L., dePerczel, M., Clarke, S., Wilson, D., Childs, K. E., & White, R. L. (1993). Functional analysis of classroom variables for students with emotional and behavioral disorders. Behavioral Disorders, 18, 275–291. Erickson, M. J., Stage, S. A., & Nelson, J. R. (2006). Naturalistic study of the behavior of students with EBD referred for functional behavior assessment. Journal of Emotional and Behavioral Disorders, 14, 31–40. Ervin, R. A., Kern, L., Clarke, S., DuPaul, G. J., Dunlap, G., & Friman, P. C. (2000). Evaluating assessment based intervention strategies for students with ADHD and comorbid disorders within natural classroom context. Behavioral Disorder, 25, 344–358. Iwata, B. A., Vollmer, T. R., & Zarcone, J. R. (1990). The experimental (functional) analysis of behavior disorders: Methodology, applications, and limitations. In A. C. Repp & N. N. Singh (Eds.), Perspectives on the use of nonaversive and aversive interventions for persons with developmental disabilities (pp. 301–330). Sycamore, IL: Sycamore Publishing Company. Kamps, D., Ellis, C., Mancina, C., Wyble, J., Greene, L., & Harvey, D. (1995). Case studies using functional analysis for young children with behavioral risks. Education and Treatment of Children, 18, 243–260.
HYE RAN PARK FUNCTIONAL GOALS Functional goals are based on the ultimate desired, postschool outcome for an individual. According to Cronin and Patton (1993), functional goals should be based on ‘‘events or activities typically encountered by most adults in everyday life.’’ Essentially, the idea is to determine the most important goals for an individual to achieve optimum adult independence based on his or her needs and skills, as well as the needs of the family and major life demands. Functional goals can include those in self-help 149
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and daily living skills, as well as functional academics and social skills. These goals are broken down into basic steps that are taught as functional skills. REFERENCE Cronin, M. E., & Patton, J. R. (1993). Life skills instruction for all students with special needs. Austin, TX: Pro-Ed.
FURTHER INFORMATION Wehman, P, & Kregel, J. (2004). Functional curriculum for elementary, middle, and secondary age students with special needs (2nd ed.). Austin, TX: Pro-Ed.
ANDREA M. BABKIE FUNCTIONAL LIMITATIONS Functional limitations refer to restrictions an individual may have in terms of development of skills or cognitive abilities and the restrictions placed on him or her in terms of opportunities to achieve. These limitations may include having difficultly mastering, maintaining, and generalizing skills taught, including those in the academic, self-help, daily living, and social skills areas. Limitations also include behavioral issues an individual may exhibit that interfere with successful integration into the school or community setting. From the perspective of restrictions placed on an individual, these may include nonacceptance of differences, job or community requirements beyond an individual’s skills, and the need to develop an understanding of how to work with the individual. Additionally, the term functional limitations may be used to refer to the lack of opportunities provided by the school and postschool settings to develop functional skills, especially if the focus is academically based rather than a functionally based curriculum. ANDREA M. BABKIE FUNCTIONALLY EQUIVALENT ALTERNATIVE BEHAVIOR Functionally equivalent alternative behavior refers to the replacement of an undesired behavior with a new, generally more acceptable or more effective alternative behavior. This new behavior fulfills the same function as the behavior being replaced. When considering what to teach as an alternative behavior, it is important to consider what is socially appropriate, not only by parents, teachers, and other adults, but also among peers and in community settings. KATIE BASSITY FUNCTIONAL MAGNETIC RESONANCE IMAGING (FMRI) Functional magnetic resonance imaging (fMRI) is a neuroimaging technique used to measure activity in structures of the brain. fMRI is different from a typical MRI scan in that the fMRI is taken while the patient is involved with some mental exercise or activity, thus showing which parts of the brain are being activated and used for various actions. This is crucial to understanding what areas of the brain may be different or damaged in individuals with autism and could potentially help with treatment. One area of intense fMRI study in autism has been the study of the fusiform gyrus. 150
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FURTHER INFORMATION Bremner, J. D. (2005). Brain imaging handbook. New York: W. W. Norton & Co.
PAUL G. LACAVA FUNCTIONAL OUTCOMES Functional outcomes refer to an individual achieving optimum independence in the post-school environment, based on the individual’s development and on the provision of an appropriate curriculum. Functional outcomes may be focused on academic goals, and functional goals and skills that allow for successful integration into the adult community (whether it be socially, occupationally, and/or residentially), or a combination of both. The goal for all students with ASD is to be a participating and involved member of the community while school-aged and as an adult. ANDREA M. BABKIE FUNCTIONAL PROTEST TRAINING Functional protest training involves teaching an appropriate, functional form of protest to replace nonfunctional or undesired forms of protest. For example, if a student screams when she experiences an unpleasant auditory experience, a more appropriate form of protest would be for the student to cover her ears (for a nonverbal student) or say ‘‘That hurts my ears’’ (for a verbal student). KATIE BASSITY FUNCTIONAL SKILLS Functional skills are those skills necessary to progress successfully in school and life and can include daily living and self-help skills as well as the academic and social skills. The focus is to select and teach skills that the individual will use in immediate and future environments, and to present or teach them in such a way that the skill will be used routinely, allowing for maintenance and generalization. The decision on what is a functional skill can be thought of as a process used by teachers to answer questions such as ‘‘How, when, and where will my students use this knowledge now and in the future?’’ (Weaver, Landers, & Adams, 1991). Depending on the age and developmental level of the individual, as well as family desires, functional academic skills may address: (a) reading for information (basic reading such as a recipe, a newspaper article, a job application, a course, or a transportation schedule); (b) mathematical skills to allow personal independence (basic math skills, using a calculator, comparing prices, making purchases); (c) science skills (such as reading a medication chart); (d) social studies (registering to vote and voting, determining the appropriate bus route in the community); and (e) social skills (communication, cooperation, problem-solving, self-initiation) among others (Cronin and Patton, 1993). See also adaptive behavior; age appropriate; developmental age. REFERENCES Cronin, M. E., & Patton, J. R. (1993). Life skills instruction for all students with special needs. Austin, TX: Pro-Ed. Weaver, R., Landers, M. F., & Adams, S. (1991). Making curriculum functional: Special education and beyond. Intervention in School and Clinic, 25, 284–287.
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FUNCTIONS OF BEHAVIOR In the field of behavior analysis, it is believed that challenging behavior serves four functions: escape/avoidance, attention, sensory, and tangible. Escape/avoidance refers to behavior that is intended to allow the child to avoid a person or escape doing a task. Behavior that seeks attention includes that which receives positive and negative attention. Sensory and tangible functions are straightforward in that they seek some type of sensory input and something tangible, respectively. These functions may not be apparent to a caregiver in the midst of a challengingbehavior situation. In addition, a single behavior may serve more than one function. For example, through one behavior an individual may seek both to avoid an unpleasant task and to gain a preferred item (escape/avoidance and tangible). The function of a behavior can also evolve, beginning as an escape and evolving into attention seeking as the individual finds the resulting attention rewarding. It is important to note that behaviors can actually be strengthened if a consequence is put in place that does not address the correct function of a behavior. For instance, if a child originally exhibits a behavior to escape a nonpreferred activity and receives reinforcement of the behavior in the form of attention, the escape behavior is more likely to happen again because the consequence, attention, is even more reinforcing than escaping the activity. KATIE BASSITY FUNCTIONS OF COMMUNICATION Functions of communication are the purposes for which one communicates. These functions include requesting (i.e., ‘‘I want a ball’’), joint attention (shifting another’s attention to an object, act, or topic), attracting attention (i.e., ‘‘Watch this!’’), commenting (i.e., ‘‘I like your new shoes’’), and protesting (i.e., ‘‘I don’t want to eat that’’). Children with autism demonstrate a restricted pattern of communicative functions, often protesting and requesting at higher frequencies than the other communicative functions (Wetherby & Prizant, 1999). REFERENCE Wetherby, A., & Prizant, B. (1999). Enhancing language and communication development in autism: Assessment and intervention guidelines. In D. B. Zager (Ed.), Autism: Identification, education, and treatment (2nd ed., pp. 141–174). Mahwah, NJ: Lawrence Earlbaum Associates.
JEANNE HOLVERSTOTT FUSIFORM GYRUS The fusiform gyrus (FG) is located in the temporal lobe of the cerebrum of the human brain. Imaging studies have indicated that the FG is activated when processing faces but that there is lower FG activation for those with autism. Further evidence has highlighted that the FG is involved with the processing and perception of objects or areas of expertise (such as categories, special interests, and so on). One vital area of research being explored is how the FG operates within the network of other brain regions and how this might be different and how it may affect social cognition for those with autism. 152
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FURTHER INFORMATION Gauthier, I., Tarr, M. J., Anderson, A. W., Skudlarski, P., & Gore, J. C. (1999). Activation of the middle fusiform ‘‘face area’’ increases with expertise in recognizing novel objects [Electronic version]. Nature Neuroscience, 2, 568–573. Haxby, J. V., Hoffman, E. A., & Gobbini, M. I. (2002). Human neural systems for face recognition and social communication [Electronic version]. Biological Psychiatry, 51, 59–67. Herbert, M. R. (2004). Neuroimaging in disorders of social and emotional functioning: What is the question [Electronic version]? Journal of Child Neurology, 19, 772–784. Insell, T. R., & Fernald, R. D. (2004). How the brain processes social information: Searching for the social brain [Electronic version]. Annual Review of Neuroscience, 27, 697–722. Pierce, K., M€uller, R. A., Ambrose, J., Allen, G., & Courchesne, E. (2001). Face processing occurs outside the fusiform ‘‘face area’’ in autism: Evidence from functional MRI. Brain, 124, 2059–2073 Puce, A., Allison, T., Gore, J. C., & McCarthy, G. (1995). Face-sensitive regions in human extrastriate cortex studied by functional MRI [Electronic version]. Journal of Neurophysiology, 74, 1192–1199. Sasson, N. J. (2006). The development of face processing in autism. Journal of Autism and Developmental Disorders, 36, 381–394. Schultz, R. T., Grelotti, D. J., Klin, A., Kleinman, J., Van der Gaag, C., Marois, R., et al. (2003). The role of the fusiform face area in social cognition: Implications for the pathobiology of autism [Electronic version]. Philosophical Transactions of the Royal Society, 358, 415–27.
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G GENERAL CASE PROGRAMMING General case programming is a generalization strategy where multiple examples of a concept or behavior, and systematically varying aspects of the training or intervention, are utilized to increase the success of skill generalization to novel situations. KATHERINE E. COOK
GENERALIZATION Generalization occurs when a behavior can withstand many environments (settings and people) over time, and that one behavior can affect behavior change in other associated areas (Baer, Wolf, & Risley, 1968). For example, a child has generalized learning the color blue when he or she can point to any blue object in an environment at any time and label that object as blue. REFERENCE Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 1–7.
TARA MIHOK
GENETIC FACTORS/HEREDITY The myth of autism being caused by inappropriate parenting or parental bonding with the infant has been shattered by scientific research over the last four decades. Although parenting abilities don’t cause autism, research supports a genetic component to this disability. As with many other areas, the field of autism has been the beneficiary of genetic research over the last few decades. It has become clear that autism is a disability that is predisposed in some individuals. This genetic susceptibility has been shown in studies that have suggested that as many as 5 to 20 different genes may be associated with autism. One of the most significant findings has been the results of twin and family studies. These results have revealed that there is a much higher rate of autism between identical twins, that a family member of someone with autism has a higher probability of having an autism spectrum disorder than the typical
GENOTYPE
population, and that some disorders can be linked to genetic conditions such as fragile X syndrome. See also twin studies. FURTHER INFORMATION Pericak-Vance, M. A. (2003). Discovering the genetics of autism. USA Today, 131, 56–57.
PAUL G. LACAVA
GENOTYPE Genotype refers to the internally coded, inheritable information carried by all living organisms. This stored information is used as a blueprint or set of instructions for building and maintaining a living creature. These instructions are found within almost all cells (the internal part), they are written in a coded language (the genetic code), they are copied at the time of cell division or reproduction, and they are passed from one generation to the next (inheritable). These instructions are intimately involved with all aspects of the life of a cell or an organism. They control everything from the formation of protein macromolecules, to the regulation of metabolism and synthesis. On-going research studies are being conducted to identify the autism genotype. JEANNE HOLVERSTOTT
GENTLE TEACHING (GT) Gentle teaching (GT) was originally defined as a nonaversive approach to dealing with challenging behaviors (McGee, Menolascino, Hobbs, & Menousek, 1987). It is a broad term based on a philosophical approach that emphasizes mutual bonding between caregivers and persons with behavior difficulties. As such, it is considered an alternative to any kind of aversive intervention used by parents and professionals. The term gentle teaching was first introduced by McGee in 1985 (Jones, McCaughey, Connell, & Clwyd Health Authority, 1991; McGee, 1985a, b). McGee (1985b) successfully applied gentle teaching to more than 650 persons, ranging from those with severe to profound mental retardation and persistent self-injurious behaviors (Menolasino & McGee, 1983) to persons with mild to moderate mental retardation and a range of mental illnesses such as depression and schizophrenia (Menolascino & McGee, 1983) over a 5-year period. The results showed a decrease in maladaptive behaviors. More recently, McGee and Menolascino (1991) redefined GT as a psychology of interdependence between caregivers and persons with behavioral difficulties. This relationship requires mutual change, starting with the need for caregivers to analyze and increase their value-centered interactions and decrease dominative ones. To differentiate GT from behaviorism, McGee (1990) explained its basic assumptions as follows: (a) frequent and unconditional value giving is central to the interactional exchange; (b) everyone has an inherent longing for affection and warmth; (c) dominating actions, such as the use of restraint and punishment, need to be decreased and replaced with value-centered behaviors; and (d) change in both the caregiver and the person exhibiting maladaptive behaviors is critical. 156
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According to McGee (1992), GT is distinct from applied behavior analysis in its unconditional valuing, its focus on mutual change, its analysis and measurement of dyadic variables, and its underlying assumptions. However, past behavioral research contributed to GT using various applied behavioral analysis techniques and the use of the following supportive techniques for enhancing relationships and decreasing challenging behaviors were recommended: (a) errorless teaching strategies, (b) task analysis, (c) environmental management, (d) precise and conservative prompting, (e) identification of precursors to target behavior, (f) reduction of verbal instructions or verbal and physical demands, (g) choice making, (h) fading assistance, and (i) integration of other caregivers and peers into the relationships (McGee et al., 1987). Since McGee (1985a) published his first study on the effects of GT, several researchers have reported positive outcomes of this approach (Jones et al., 1991; Jordan, Singh, & Repp, 1989; Kelley & Stone, 1989; Paisey, Whitney, & Moore, 1989; Polirstok, Dana, Buono, Mongelli, & Trubia, 2003). However, several studies have reported negative effects. Some suggested that GT, while not harmful, was not effective (Cullen & Mappin, 1998). Others noted that GT might have potential risks for people who show aggression, including self-injurious behavior (Barrera & Teodoro, 1990; Emerson, 1990). In addition, the original concept of GT has been criticized because the strategies used were not different from those of applied behavior analysis, and no clear definition of GT has been provided to examine the effectiveness of GT. Moreover, its research methodology was limited to conclude that GT is effective. For example McGee (1985b) did not control extraneous variables and did not have a baseline to be compared. Since the original reports of GT did not include quantification of behavior change or criteria for how to determine successful results, more information is needed to support an objective review of this approach (Mudford, 1995; Simpson et al., 2005). Primarily, gentle teaching is a philosophical approach used with individuals with disabilities as an alternative to aversive intervention. To date, few empirical studies have reported evidence-based research on gentle teaching. See also empirical evidence. REFERENCES Barrera, F. J., & Teodoro, G. M. (1990). Flash bonding or cold fusion? A case analysis of gentle teaching. In A. C. Repp & N. N. Singh (Eds.), Current perspectives on the use of aversive and non-aversive interventions with developmentally disabled persons (pp. 199–214). Sycamore, IL: Sycamore. Cullen, C., & Mappin, R. (1998). An examination of the effects of gentle teaching on people with complex learning disabilities and challenging behavior. British Journal of Clinical Psychology, 37, 199–211. Emerson, E. (1990). Some challenges presented by severe self-injurious behaviour. Mental Handicap, 18, 92–98. Jones, R., McCaughey, R., Connell, E., & Clwyd Health Authority (1991). The philosophy and practice of gentle teaching: Implication for mental handicap services. The Irish Journal of Psychology, 12, 1–16. Jordan, J., Singh, N., & Repp, A. (1989). An evaluation of gentle teaching and visual screening in the reduction of stereotypy. Journal of Applied Behavior Analysis, 22, 9–22. Kelley, B., & Stone, J. (1989). Gentle teaching in the classroom. Entourage, 4, 15–19.
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GIFTEDNESS McGee, J. J. (1985a). Gentle teaching. Mental Handicap in New Zealand, 9(3), 13–24. McGee, J. J. (1985b). Examples of the use of gentle teaching. Mental Handicap in New Zealand, 9(4), 11–20. McGee, J. J. (1990). Gentle teaching: The basic tenet. Metal Handicap Nursing, 86, 68–72. McGee, J. J. (1992). Gentle teaching’s assumptions and paradigm. Journal of Applied Behavior Analysis, 25, 869–872. McGee, J. J., & Menolascino, F. J. (1991). Beyond gentle teaching: A non-aversive approach to helping those in need. New York: Plenum Press. McGee, J. J., Menolascino, F. J., Hobbs, D. C., & Menousek, P. E. (1987). Gentle Teaching: A non-aversive approach to helping persons with mental retardation. New York: Human Sciences Press. Menolascino, F. J., & McGee, J. J. (1983). Persons with severe mental retardation and behavioral challenges: From disconnectedness to human engagement. Journal of Psychiatric Treatment and Evaluation, 5, 187–193. Mudford, O. C. (1995). Review of the gentle teaching data. American Journal of Mental Retardation, 99, 345–355. Paisey, T. J., Whitney, R. B., & Moore, J. (1989). Person-treatment interactions across nonaversive response-deceleration procedures for self-injury: A case study of effects and side effects. Behavioral Residential Treatment, 4, 69–88. Polirstock. S. R., Dana, L., Buono, S., Mongelli, V., & Trubia, G. (2003). Improving functional communication skills in adolescents and young adults with severe autism using gentle teaching and positive approaches. Topics in Language Disorders, 23, 146–153. Simpson, R. L., Boer-Ott, S. R., Griswold, D. E., Myles, B. S., Byrd, S. E., Ganz, J. B., Cook, K. T., Otten, K. L., Ben-Arieh, J., Kline, S. A., & Adams, L. G. (2005). Autism spectrum disorders: Interventions and treatments for children and youth. Thousand Oaks, CA: Corwin Press.
FURTHER INFORMATION Gentle teaching: http://www.gentleteaching.nl. Gentle teaching international: http://www.gentleteaching.com.
HYO JUNG LEE GIFTEDNESS Extreme giftedness, or savant skills, is rare and typically seen in individuals with some degree of mental handicap, hence the original (now unused) term of idiot savants, although the presence of mental handicap is not guaranteed. Around 2 to 3 percent of the general population have a mental handicap, but only around 0.06 percent of those individuals are estimated to have the exceptionally high level of ability in a certain area that goes beyond what the average individual can achieve (Hermelin, 2001). Savant skills are found more frequently in individuals with autism than in any other population, however there would still only be 1 or 2 individuals in every 200 with autism who have such abilities. Areas of savant skill typically include the following: numbers and math, calendrical calculations, drawing and art, date memory, and musical ability. Hermelin (2001) also reports poetry skills and skills with foreign languages. Individuals with number and math savant skills are capable of doing complex and vast mathematical calculations in their heads. Those who are calendrical calculators can tell you exactly what day a certain date will fall on any time for the past or future. Savants with drawing skills are capable of artwork such as producing phenomenal, accurate, and proportioned pictures with perspective from a very early age. A well-known autistic artist with this ability is Stephen Wiltshire. Oliver Sachs (1995) 158
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wrote an excellent essay on Wiltshire’s talent and artistic ability in contrast to his autism. Savants with date memory can tell you exactly what was happening, what people were wearing, or give you the exact date for an event when asked, no matter how insignificant that event may seem to others. Those with musical savant skills often have perfect pitch and can hear every note accurately. They are able to perform such feats as sitting in front of a piano, having never learned to play, and reproducing complex pieces of classical music. Frith (2003) cites the case of Nigel, a man unable to look after himself who is nevertheless a sought-after classical pianist capable of playing any piece after having heard it only once. Those with skills in poetry or in foreign languages show an aptitude beyond their general abilities and beyond those of others around them. Smith and Tsimpli (1995), for example, discuss the case of Christopher, a multilingual savant who has learned to speak dozens of languages fluently. There is some uncertainty about how savants possess the skills they do while at the same time often having learning disabilities. Nettlebeck (1999) suggests that general theories of intelligence cannot account for the phenomena. Many researchers suggest that it may be something to do with the tendency in autism to focus on details, on piece-meal processing, building up connecting units of information or details rather than focusing on the bigger picture (Frith, 2003; Mottron & Belleville, 1993; Heaton, Pring, & Hermelin, 1998), and some have attempted to design computer programs that can mimic the savant skills, for example of calendrical calculation (Norris, 1990). Whatever the theories, savant skills and giftedness is one area that highlights the strengths and amazing capabilities of those who are seen otherwise to be low functioning and disabled. REFERENCES Frith, U. (2003). Autism: Explaining the enigma (2nd ed.). Oxford: Blackwell Publishing. Heaton, P., Pring, L., & Hermelin, B. (1998). Autism and pitch processing: A precursor for savant musical ability. Music Perception, 15, 291–305. Hermelin, B. (2001). Bright splinters of the mind: A personal story of research with autistic savants. London: Jessica Kingsley Publishing. Mottron, L., & Belleville, S. (1993). A study of perceptual analysis in a high level autistic subject with exceptional graphic abilities. Brain and Cognition, 23, 279–309. Nettlebeck, T. (1999). Savant skills–rhyme without reason. In M. Anderson (Ed.), The development of intelligence (pp. 247–273). Hove: Psychology Press. Norris, D. (1990). How to build a connectionist idiot (savant). Cognition, 35, 277–291. Sacks, O. (1995). An anthropologist on Mars. London: Picador. Smith, N., & Tsimpli, I. M. (1995). The mind of a savant: Language learning and modularity. Oxford: Blackwell Publishing.
FIONA J. SCOTT
GILLIAM ASPERGER DISORDER SCALE (GADS) The Gilliam Asperger Disorder Scale (GADS; Gilliam, 2001) is an instrument used for the assessment of individuals ages 3 through 22. This tool can be used by anyone who has direct contact with the individual such as teachers, parents, and other team members. The scale consists of sections including: Restricted Pattern of Behavior, Cognitive Patterns, Pragmatic Skills, Early Development, and Key Questions. The GADS can be used to identify individuals with Asperger syndrome, assess people 159
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referred for behavior challenges, document progress in the area of behavior problems, and target goals for Individualized Education Programs. See also cognitive processes; pragmatics. REFERENCE Gilliam, J. (2001). Gilliam Asperger disorder scale. Austin, TX: Pro-Ed.
BROOKE YOUNG GILLIAM AUTISM RATING SCALE (GARS) The Gilliam Autism Rating Scale (GARS) is a standardized, norm-referenced, behavioral checklist used to identify and measure changes in programming for individuals with autism ages 3 to 22. The checklist is divided into three subscales: stereotyped behaviors, communication, and social interaction. Items on the GARS are measurable by objective frequency of behavior; therefore, direct observation is necessary. Parents and/or professionals at school or home can complete these scales in 5 to 10 minutes. See also norm-referenced assessment; standardization. FURTHER INFORMATION Gilliam, J. E. (1995). Gilliam autism rating scale examiner’s manual. Austin, TX: Pro-Ed.
MELANIE D. HARMS GLUTEN-FREE Gluten is a wheat protein found in wheat, rye, and barley. A gluten-free diet excludes any food or drink that either contains gluten or could have potentially been contaminated by gluten; it is thought that most sources of oats are contaminated with gluten as well. Gluten is found in common foods such as breads, pastas, cookies, cereals, and luncheon meats. It can also be hidden in other foods with ambiguous ingredients such as natural flavoring, artificial flavorings, and caramel color. In these cases, calling the food manufacturer usually clears up questions regarding gluten in the products. Some families of children with autism spectrum disorder have decided to try a glutenfree/casein-free diet believing that gluten and casein may adversely affect their child’s neurological processes. Some parents report that removing gluten and casein from their child’s diet results in increased attention as well as reduced tantrums and aggression. See also diet; diet therapy. FURTHER INFORMATION Celiac Disease and Gluten-free Diet Support Center, www.celiac.com. Gluten Intolerance Group of North American, www.gluten.net.
MAYA ISRAEL GOOD GRIEF! Children with autism spectrum disorders (ASD) face myriad challenges as they encounter life’s disappointments. Loss is at the center of many struggles. Sometimes, the loss experienced by a child with ASD is perceived similarly to that of a typical child, but frequently the child with ASD demonstrates responses that are similar in content but different in intensity. For example, their responses, though conventional in topic 160
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or format, may be characterized by an increased or decreased amount of emotion, endless repetition, and/or seemingly timeless duration. On other occasions, children with ASD may respond in ways that are genuinely unique! Parents and professionals need guidelines to help them provide individuals with ASD the support they need to learn from life’s unanticipated setbacks, whether it is the loss of a favorite toy (considered a day-to-day loss) or the loss of a loved one (death & dying). Over time, this translates into an effort to teach children with ASD to tie their experiences together and use the information gained when presented with future obstacles. To help individuals with ASD turn life’s losses into learning opportunities (i.e., ‘‘good grief’’), parents and professionals may find the following guidelines helpful (Gray, 2003): 1. Abandon Assumptions: ‘‘Start from social scratch’’ by replacing our confidence in being able to interpret the behavior of persons with ASD with respect for their differences. This involves considering an event alongside what we know about how that child perceives the social world. 2. Advance Notice: Gather information before it is needed. In this matter of loss, this refers to the process of gathering background information and using activities (i.e., Social Stories or similar methods) to share what we’ve learned—that is, to provide the benefit of ‘‘knowing what to do’’ ahead of time. 3. Accommodations and Analogies: Teach children with ASD abstract concepts with the use of individually tailored vocabulary and examples. For children who interpret words literally, discussions about loss run the risk of frequent expressive and receptive misunderstanding. Carefully choosing vocabulary or using analogies may bridge the gap between a concept and comprehension. 4. Affirm Feelings: Use affirmation to acknowledge the validity and importance of the child’s feelings without necessarily knowing what she is thinking or feeling. Affirmation says, ‘‘I know you and I are currently in very different emotional places, and that’s okay. I am on your team and we are in this together.’’ In instances where the source of distress is difficult to identify or the events leading up to it are hard to trace with any certainty, affirmation plays a large and helpful role. 5. Associations: Teach appropriate associations. Children with ASD often associate loss with negative emotion or mistakenly make a connection between two simultaneous but unrelated cues. The goal of Good Grief! is to encourage identification between accurate links of past, present, and future experiences. Use strategies that gradually, step-by-step, lead to cumulative learning and positive feelings of accomplishment.
Collectively these guidelines help children ‘‘move through’’ and learn from uncomfortable and/or unanticipated setbacks. In this way, losses become opportunities to gain practical skills to navigate life’s unexpected twists and turns. REFERENCE Gray, C. (2003). Gray’s guide to loss, learning, and children with ASD. Jenison Autism Journal, 15(3).
CAROL GRAY
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WHITNEY MITCHELL KRUSNIAK
GRADUATED GUIDANCE Graduated guidance is the incremental adjustment of full physical prompts to assure student success in a particular task. Graduated guidance is most frequently used for 161
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tasks that are more complex or have multiple steps. However, it is not a preset system of fading and relies heavily on the instructor’s judgment of student need. Prompts within graduated guidance range from: (a) full hand-over-hand, (b) light touch, and (c) shadowing. Graduated guidance can include both increasing and decreasing prompts with the focus always on providing the level of support needed for a particular task at a particular moment. KATIE BASSITY GRAPHIC ORGANIZER Graphic organizers or content maps are visual strategies that display information in a concrete and organized manner (see Figure 10). They take abstract information and organize the concepts into simpler concepts, highlight important information, and display relationships. Graphic organizers can be Figure 10 Venn Diagram Supporting Common used to structure writing projects, help in Interests problem solving, decision making, studying, planning, and brainstorming. Graphic organizers can be used prior to reading as an advanced organizer, during reading to assist with connecting key concepts, and after reading to measure understanding. According to Myles and Southwick, graphic organizers often enhance the learning of students with autism spectrum disorders because: 1. 2. 3. 4.
They are visual; this modality is often a strength for students. They are static; they remain consistent and constant. They allow for processing time; the student can reflect on the material at his own pace. They are concrete and are more easily understood than a verbal-only presentation. (p. 120, 2005)
See also cognitive learning strategies. REFERENCE Myles, B. S., & Southwick, J. (2005). Asperger syndrome and difficult moments: Practical solutions for tantrums, rage, and meltdowns. Shawnee Mission, KS: Autism Asperger Publishing Company.
FURTHER INFORMATION Bromley, K., Irwin-DeVitis, L., & Modio, M. (1995). Graphic organizers: Visual strategies for active learning. New York: Scholastic. Wiig, E. H., & Wilson, C. C. (2001). Map it out: Visual tools for thinking, organizing, and communicating. Eau Claire, WI: Thinking Publications.
TERRI COOPER SWANSON
GRAVITATIONAL INSECURITY Gravitational insecurity refers to difficulty maintaining balance and coordination of movements along variable surfaces and inclines, such as stairs, a gravel walkway, or 162
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icy sidewalk. Oftentimes, gravitational insecurity is a result of an inadequately functioning vestibular and/or proprioceptive sensory system. See also proprioception; sensory processing; sensory processing dysfunction. KELLY M. PRESTIA GROSS MOTOR DEVELOPMENTAL QUOTIENT Gross motor development quotient is a score that refers to the results of standardized tests that measure the use of the large muscle groups and gross motor skills. See also standardization. KELLY M. PRESTIA GROSS MOTOR SKILLS Gross motor skills is a term used to describe any activity that requires the use and coordination of the larger muscle groups of the body, such as the legs, arms, or trunk. Examples of gross motor skills include skipping, throwing a ball, or running. KELLY M. PRESTIA GUIDED COMPLIANCE Guided compliance is the use of physical guidance through a task to cause a student to comply with directions. Although similar to hand-over-hand assistance, guided compliance is technically not a prompt; it acts as a consequence for noncompliance. Guided compliance occurs after the student is given the opportunity to comply with direction but does not comply and/or attempts to escape. The caregiver then places her hands over the student’s hands, feet, or under the student’s arms (to aid in standing, moving, etc.) and physically guides the student through the task. Some research suggests that the use of guided compliance is particularly effective when noncompliance is accompanied by escape behaviors. See also graduated guidance; prompting. KATIE BASSITY
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H HABIT REHEARSAL Habit rehearsal is the repetition of desired behaviors in order to build the behaviors to fluency. Such rehearsals are performed in as functional or as realistic settings as possible so the desired behaviors can be easily performed in natural situations. Habit rehearsal is often used for training appropriate behaviors in stressful situations, such as relaxation techniques. KATIE BASSITY HAIR ANALYSIS Hair analysis measures the mineral content in hair. These types of analyses have been employed to test for the presence of heavy metals, such as mercury, in epidemiological efforts with regard to autism. According to the American Medical Association, hair analysis may not be used in the determination of medical therapies (n.d.). See also epidemiology. REFERENCE American Medical Association (n.d.). H-175.955 Hair analysis—a potential for medical abuse. Retrieved on December 8, 2006, from www.ama-assn.org/apps/pf_new/pf_online?f_n=browse&doc=policyfiles/HnE/H-175.995.HTM.
FURTHER INFORMATION Kirby, D. (2005). Evidence of harm: Mercury in vaccines and the autism epidemic: A medical controversy. New York: St. Martin’s Press. Marhon, S. (2002). Natural medicine guide to autism. Charlottesville, VA: Hampton Roads Publishing Co.
MYRNA J. ROCK HALSTEAD-REITAN NEUROPSYCHOLOGICAL TEST BATTERY (HRPTB) The Halstead-Reitan Neuropsychological Test Battery (HRPTB; Reitan & Wolfson, 1993) is a set of eight tests used to evaluate brain and nervous system functioning in individuals ages 15 years and older, typically for individuals with suspected brain damage, by testing concept formation and abstract reasoning. Children’s versions are the Halstead Neuropsychological Test Battery for Older Children (ages 9 to 14) and the Reitan
HAND-OVER-HAND ASSISTANCE (HOH)
Indiana Neuropsychological Test Battery (ages 5 to 8). The Halstead-Reitan evaluates a wide range of nervous system and brain functions, including: visual, auditory, and tactual input; verbal communication; spatial and sequential perception; the ability to analyze information, form mental concepts, and make judgments; motor output; and attention, concentration, and memory. The battery also provides useful information regarding the cause of damage (e.g., closed head injury, alcohol abuse, Alzheimer’s disorder, stroke), which part of the brain was damaged, whether the damage occurred during childhood development, and whether the damage is getting worse, staying the same, or improving. Information regarding the severity of impairment and areas of personal strengths can be used to develop plans for rehabilitation or care. REFERENCE Reitan, R. M., & Wolfson, D. (1993). The Halstead-Reitan neuropsychological test battery: Theory and clinical interpretation (2nd ed.). South Tucson, AZ: Neuropsychology Press.
JEANNE HOLVERSTOTT HAND-OVER-HAND ASSISTANCE (HOH) Hand-over-hand (HOH) assistance is the practice of an adult (or peer) placing his or her hands over a student’s hands and physically moving the student through a given process or task. HOH also applies to physically moving other parts of a student’s body through a task. Also referred to as hand-over-hand prompting, it is the most invasive form of prompting and is generally considered best to use only when other prompts are ineffective or impractical, and should be faded as quickly as possible. Used appropriately, HOH can be an effective tool; however, there is concern that overuse of HOH assistance results in prompt dependence. In addition, some students may resist HOH assistance as a result of desired independence or control, or because of an aversion to touch. However, in some situations it may be the only way to provide assistance and may be preferred over high rates of verbal prompting. See also graduated guidance; guided compliance; prompting. KATIE BASSITY HAND REGARD Hand regard is a behavior that is repetitive or sensory generating in nature and consists of an individual looking at his fingers and/or hands. The fingers and hands can be still or moving. This behavior is common in typically developing children around four months of age but may persist for years for those with autism. FURTHER INFORMATION Accardo, P. J., Whitman, B. Y., Laszewski, C., Haake, C. A., & Morrow, J. D. (1996). Dictionary of developmental disabilities terminology. Baltimore: Brookes Publishing Co. Oxbridge Solutions, Ltd. (2003). Hand regard. Retrieved May 18, 2006, from http://www.gpnote book.co.uk/homepage.cfm.
PAUL G. LACAVA HEAD CIRCUMFERENCE Head circumference is the measured distance of the widest part of the human skull. Typical development is measured in centimeters, and there are norms for sex and age. 166
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Research from the 1990s into the 2000s has highlighted that some youngsters with autism have atypical head circumference due to differences in brain volume. Increased head circumference measured at birth and between 6 and 14 months was a finding in one study for 59 percent of subjects with autism spectrum disorders (Courchesne, Carper, & Akshoomoff, 2003). This head growth was significantly higher than typically developing youngsters from a reference group. This and other findings suggest that increased head growth in infancy may be either a possible symptom or a risk marker for autism. REFERENCE Courchesne, E., Carper, R., & Akshoomoff, N. (2003). Evidence of brain overgrowth in the first year of life of autism. Journal of the American Medical Association, 290, 337–344.
FURTHER INFORMATION Courchesne, E. (2004). Brain development in autism: Early overgrowth followed by premature arrest of growth. Mental Retardation and Developmental Disabilities Research Reviews, 10, 106– 111. Lainhart, J. E. (2003). Increased rate of head growth during infancy in autism. Journal of the American Medical Association, 290, 393–394.
PAUL G. LACAVA HEAVY METALS Heavy metals refer to any of a number of higher atomic weight elements, which normally present as metallic substances at room temperatures. Living organisms require trace amounts of some heavy metals, including cobalt, copper, manganese, molybdenum, vanadium, strontium, and zinc, but excessive levels tend to accumulate, a process that continues as organisms age (Harte, Holdren, Schneider, & Shirley, 1991). Other heavy metals such as mercury, lead, and cadmium have no known vital or beneficial effect on organisms, and their accumulation over time in the bodies of mammals can exhibit toxic effects (Harte et al., 1991). Proponents of the relationship between heavy metals and autism spectrum disorders point to the toxicity to the central nervous system and multiple sources of exposure, including environmental (food, water, dust) and medical (mercury preservatives in vaccinations). Chelation is the predominant treatment for heavy metal toxicity. Chelation involves the use of chelation agents to bind to the metal and increase excretion. See also vaccinations (thimerosal). REFERENCE Harte, J., Holdren, C., Schneider, R., & Shirley, C. (1991). Toxics a to z: A guide to everyday pollution hazards. Sacramento, CA: University of California Press.
JEANNE HOLVERSTOTT HELLER’S SYNDROME. See Childhood Disintegrative Disorder HIDDEN CURRICULUM The hidden curriculum is the set of rules that everyone in the school knows, but no one has been directly taught (Bieber, 1994). Children with autism spectrum disorders do not pick up on hidden curriculum items—they must be directly taught. Knowing 167
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the hidden curriculum is essential as it helps the student be successful in understanding: (a) teacher expectations, (b) a person’s body language, (c) if a person is really their friend, and (d) how to interact or respond in social situations. It is essential to incorporate the teaching of the hidden curriculum into any social skills curriculum as well as teach them on a daily and on-going basis. REFERENCE Bieber, J. (Producer). (1994). Learning disabilities and social skills—Richard Lavoie: Last one picked . . . first one picked on. Washington, DC: Public Broadcasting Service.
FURTHER INFORMATION Myles, B. S., Trautman, M. L., & Schelvanm, R. L. (2004). The hidden curriculum: Practical solutions for understanding unstated rules in social situations. Shawnee Mission, KS: Autism Asperger Publishing Company.
TERRI COOPER SWANSON HIGH-FUNCTIONING AUTISM Although used frequently by professionals and parents, the term high-functioning autism is not a true diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000). In previous generations, the term was sometimes used to refer to a person with classic autism who had vocal abilities. Today, high-functioning autism tends to be used as a short-hand term for autistic disorder without mental retardation (an IQ above 70). It is estimated that at least 25 to 33 percent of individuals diagnosed with autism today fall in the high-functioning category. In order to be diagnosed with autistic disorder, an individual must have shown delays or abnormalities in social interaction, symbolic or imaginative play, or social use of language before age 3. In addition, the individual currently must show at least two symptoms of ‘‘qualitative impairment in social interaction,’’ one symptom of ‘‘qualitative impairments in communication,’’ and one symptom of ‘‘restricted repetitive and stereotyped patterns of behavior, interests, and activities’’ (APA, 2000). There is significant disagreement today as to whether high-functioning autism and Asperger syndrome are two distinct syndromes. The only difference in the DSM-IVTR criteria for autistic disorder and Asperger syndrome is that Asperger’s requires ‘‘no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years),’’ and ‘‘no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity above the environment in childhood’’ (APA, 2000). However, clinicians today report that people with Asperger syndrome typically do have significant difficulties with self-help skills and adaptive behavior (Attwood, 2006). Some research suggests that the symptoms of high-functioning autism and Asperger’s look different at an early age but are quite similar by adolescence or early adulthood. Generally, a child with high-functioning autism is diagnosed earlier and tends to show more severe and ‘‘classic’’ symptoms of autism. Overall, the average age for a diagnosis of autism is 3, while children with Asperger syndrome are generally diagnosed at age 7 or 8. Children with high-functioning autism or Asperger syndrome both tend to have difficulties in several common areas. Nonverbal communication (facial expressions and 168
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body language) can be difficult for many to decipher. They often will interpret figurative speech (such as ‘‘go jump in a lake’’ or ‘‘drop dead’’) too literally. Most have trouble understanding the ‘‘hidden curriculum’’ (unwritten social rules, such as how far you should stand from someone, or when it’s okay to interrupt). Desire for ‘‘sameness’’ (having difficulty with change and transitions, and deriving comfort from routines) is also common. Often, children with high-functioning autism are described as ‘‘aloof,’’ having little interest in interacting with other people, while children with Asperger syndrome seek out interaction, but do so in an odd or inappropriate manner. Both groups have ‘‘restricted, repetitive’’ behaviors or interests, but children with high-functioning autism tend to perform more repetitive movements, especially odd hand movements, such as finger flicking or hand flapping, and are more likely to be interested in the parts of an object or in manipulating an object. These tend to be solitary interests. Children with Asperger syndrome are more likely to spend their time researching and accumulating vast amounts of information about a particular subject and often seek to share their information with other children or adults. Children with high-functioning autism and Asperger syndrome both tend to have language difficulties, though qualitatively different ones, especially at a young age. Children with high-functioning autism may have significant speech delays or at least lag somewhat in general areas of speech such as vocabulary. They may engage in echolalia (repeating whatever is said to them). Overall, they tend to have better nonverbal abilities than verbal abilities. Conversely, many children with Asperger syndrome have extremely advanced vocabularies, particularly in their areas of special interest (hence the nickname ‘‘little professors’’). Rather than repeating a word or phrase over and over, they tend more to repeat long monologues and ask repetitive questions. In fact, their superficially perfect language may play a role in delaying their diagnosis. Medically, children with high-functioning autism and Asperger syndrome may have some differences. Children with high-functioning autism are more likely to suffer seizures than children with Asperger syndrome (although far less likely than children with autism and mental retardation). Children with Asperger syndrome, on the other hand, are more likely to have co-morbid diagnoses such as depression, ADHD, obsessivecompulsive disorder, or Tourette’s disorder. Children with Asperger syndrome are also more likely to have motor difficulties or sensory integration dysfunction. Because the DSM-IV-TR diagnostic criteria are so similar, different clinicians might give the same high-functioning child different diagnoses. For example, a clinician who believes in following the diagnostic criteria to the letter might be inclined to diagnose a 4-year-old child with autistic disorder because the child failed to speak any words until age 3. Another might diagnose Asperger syndrome based on the same child’s obsessive interest in astronomy. A third might diagnose PDD-NOS, because he doesn’t want to ‘‘label’’ the child before age 5. And yet another might diagnose autism because she knows that label will get the child more intervention services in the local school system. Even among people diagnosed with Asperger syndrome or high-functioning autism there is tremendous variability. Their symptoms vary, their strengths vary, their behaviors vary, and their likes and dislikes vary. Ultimately, whether the diagnosis is highfunctioning autism or Asperger syndrome, the most important thing is to look at each individual’s strengths and weakness and to obtain appropriate intervention. 169
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REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Attwood, T. Is there a difference between Asperger’s syndrome and high-functioning autism? Retrieved August 25, 2006, from http://www.tonyattwood.com.au.
FURTHER INFORMATION Eisenmajer, R., Prior, M., Leekam, S., Wing, L., Gould, J., Welham, M., et al. (1996). Comparison of clinical symptoms in autism and Asperger’s disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1523–1531. Freeman, B. J., Cronin, P., & Candela, P. (2002). Asperger syndrome or autistic disorder? The diagnostic dilemma. Focus on Autism and Other Developmental Disabilities, 17, 145–151. Ozonoff, S., Dawson, G., & McPartland, J. (2002). A parent’s guide to Asperger syndrome and high-functioning autism. New York: Guilford Press. Powers, M. D. (2000). Children with autism: A parents’ guide. Bethesda, MD: Woodbine House. Sciutto, M. J., & Cantwell, C. Factors influencing the differential diagnosis of Asperger’s disorder and high-functioning autism. Journal of Developmental and Physical Disabilities, 17, 345–359. Tryon, P. A., Mayes, S. D., Rhodes, R. L., & Waldo, M. (2006). Can Asperger’s disorder be differentiated from autism using DSM-IV criteria? Focus on Autism and Other Developmental Disabilities, 21, 2–6. Wing, L. (2001). The autistic spectrum. Berkeley, CA: Ulysses Press.
LISA BARRETT MANN HIPPOCAMPUS Part of the limbic system, the hippocampus is involved in the formation of memories of experienced events and spatial orientation, or place memory and recognition. It is located deep in the temporal lobes above the amygdala. BRUCE BASSITY HIPPOTHERAPY Hippotherapy (Greek word hippos for horse) is a treatment that uses the movement of the horse to improve physical mobility and cognitive functions for people with varying disabilities. It takes the client out of the clinical setting and places them in a natural environment to work on therapy goals. Physical therapists, occupational therapists, and speech language pathologists who provide this treatment have specialized training in using the movement of the horse as a therapy tool. The hippotherapy team includes the horse, rider, sidewalkers, and instructor. Treatment strategies promote motor planning, mobility strength, and stimulation of the central nervous system. Hippotherapy is considered an effective therapy method because a horse’s gait mimics the human gait and a horse takes the same number of steps per minute as a human (American Hippotherapy Association, 2005). The horse’s muscle groups move forward, backward, up, down, and from side to side. The body responds to the horse’s movement by trying to maintain balance, and therefore the rider develops muscle tone, stretch, and strength to the same muscle groups that are used in sitting, reaching, and walking. The rider’s senses are stimulated by the warmth, smell, sight, and feel of the horse. In addition, riders connect emotionally with the horse, which makes treatment fun, and professionals report an increase in attention span and memory skills. Hippotherapy is used to treat a variety of diagnoses that include autism, cerebral palsy, multiple sclerosis, developmental delay, traumatic brain and spinal cord injury, 170
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Down syndrome, stroke, attention deficit disorders, learning or language disabilities, and visual or hearing impairments. People of all ages can benefit from hippotherapy; however, clients may be excluded if they weigh more that 300 lbs or more than 20 percent of the horse’s weight. In addition, a client might be excluded from the treatment if they have brittle-bone osteoporosis, acute arthritis, curvature of the spine greater than 30 degrees, degenerative hip joints, or are on anticoagulant medications for heart conditions. Safety measures include sidewalkers that are ready to steady riders and help with exercises, equestrian helmets, and quick release stirrups that unhook if a rider falls. A fleece or foam pad with gripping handles strapped around the horse’s belly is used instead of a saddle. Typically, insurance does not cover hippotherapy. Sessions may last up to 1 hour, once or twice per week, and the cost may range from $50 to $120 per session. Critics believe there is not enough research to show that the benefits are different than existing forms of physical therapy. Research designs are difficult due to variables such as different kinds of horses and instructors; however, Dr. Daniel Bluestone from the University of California, San Francisco compared MRI scans of children over time and found that the repetitive movement of riding helps rework networks within the cerebellum and the motor system in the cerebrum (American Equestrian Association, 2005). Hippotherapy should not be confused with Therapeutic Riding. The goals of hippotherapy are directed at improving balance, coordination, posture, fine motor control, articulation, and increasing cognitive skills. Therapeutic riding teaches the rider how to control the horse and stable management. FURTHER INFORMATION American Equestrian Alliance. (n.d.) What is hippotherapy? Retrieved June 1, 2005, from http:// www.americanequestrian.com/hippotherapy.htm. American Hippotherapy Association. (n.d.) Retrieved May 31, 2005, from www.americanhippo therapyassociation.org. CP Resource Center. Introduction to hippotherapy by Barbara Heine, PT. Reprinted from NARHA Strides, April 1997 (Vol. 3, No. 2). From http://www.twinenterprises.com. Infinitec.org. Hippotherapy. http://www.infinitec.org. The Right Step therapy Services. Hippotherapy or therapeutic riding, http://www.rightstep therapy.com. Rolandelli, P. S., & Dunst, C. J. (2003). Influences of hippotherapy on the motor and socialemotional behavior of young children with disabilities. Bridges, http://www.evidencebased practices.org/bridges.
CYNTHIA K. VAN HORN
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KARLA DENNIS
HOLDING THERAPY. See Welch Method Therapy HOMEBOUND/HOSPITAL BOUND PROGRAM Students receive special education and related services in a hospital or homebound program when unable to attend neighborhood school for medical, behavioral, or other reasons. Less than 1 percent of all students receiving special education services receive homebound or hospital bound services. Students with multiple disabilities represent the largest category of disabilities being educated in homebound or hospital bound 171
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programs. Educational services provided in these environments can range from a few days to months depending of the needs of the students. KATHERINE E. COOK HORMONE REPLACEMENT Hormone Replacement Therapy (HRT) replaces naturally occurring hormones that are deficient in the body but are needed for normal functioning and health. Common examples are thyroid hormone for underactive thyroid, insulin for diabetes, and estrogen for women who have had a hysterectomy. BRUCE BASSITY HOSPITAL BOUND PROGRAM. See Homebound/Hospital Bound Program HUG MACHINE Hug machine, also known as the ‘‘Squeeze Machine’’ or the ‘‘Hug Box,’’ is a device developed by Temple Grandin, an individual with autism, which provides deep pressure and proprioceptive input at the control of the individual. The individual lies or squats in the center of the padded, V-shaped machine as air is pumped through cylinders that push padded sideboards together to ‘‘squeeze’’ the individual. See also proprioception. KELLY M. PRESTIA HYPERLEXIA Children with hyperlexia are able to read words precociously and demonstrate an intense fascination with letters or numbers at their chronological age. However, they have significant difficulty in understanding verbal language, deficits in social skills, and difficulty in socializing and interacting with people. JOUNG MIN KIM HYPERRESPONSIVENESS Hyperresponsiveness is an overactive or intense response to typical sensory information. What may go unnoticed by others may be overly intense to an individual with a hyperresponsive sensory system. Examples of hyperresponsiveness may include covering the ears and screaming at the sound of a ringing telephone, or avoiding holding another’s hand. KELLY M. PRESTIA HYPORESPONSIVENESS Hyporesponsiveness is an underactive or slower reactive response to typical sensory information. Individuals with hyporesponsive sensory systems may require more intense, longer, or multiple sensory stimuli to get a response. Examples of hyporesponsiveness may include not looking or responding when their name is called or when tapped on the shoulder. KELLY M. PRESTIA 172
I IDIOSYNCRATIC LANGUAGE Idiosyncratic language is frequently characterized as dialogue borrowed from a specific video, repetitive questions used with alternative meanings, or social scripts parroted in new and different contexts. Idiosyncratic language is often used to reassure the communicator. KATHERINE E. COOK
I LAUGH MODEL OF SOCIAL COGNITION The I LAUGH model of social cognition was developed by Winner to demonstrate how we can take an abstract concept such as social thinking and break it down into much more salient, observable parts (Winner, 2000). The I LAUGH model is an acronym to demonstrate six different skills that form the basis through which we communicate effectively with others, verbally and nonverbally (social pragmatic skills). Not coincidentally, these same skills help us engage in life skills such as personal problem solving, working as part of a group, playing, and curriculum-based skills that require social thinking such as reading comprehension, written expression, and organizational skills. Each aspect of the model has been shown through research to be relevant to address in treatment for students with social cognitive deficits. The I LAUGH model provides parents and educators with a more specific lens through which to evaluate and understand the strengths and weaknesses of persons with social-cognitive deficits. Given that the area of social cognition is difficult to assess through formalized measures, an informal assessment that explores each of these areas of functioning can be quite revealing of a student’s relative social strengths versus socially based weaknesses. The I LAUGH model has also become a framework for understanding how better to assess students with possible social-cognitive deficits (the autism spectrum, nonverbal learning disability, ADHD, etc.). Using formal and informal tasks we can begin to understand how a child does with relationship to initiating functional communication, listening actively, abstract and inferential thinking, understanding others’ perspectives, getting the big picture and humor. The I LAUGH model is briefly reviewed here.
I LAUGH MODEL OF SOCIAL COGNITION
I=Initiation of language. Initiation of language is the ability to use one’s language skills to seek assistance or information. A student’s ability to talk about his own topics of interest can be in sharp contrast to how that student communicates when he needs assistance. L=Listening with eyes and brain. Most persons with social-cognitive deficits have difficulty with auditory comprehension. Listening, however, requires more than just taking in the auditory information; it also requires the person to integrate information he sees with what he hears to understand the deeper concept of the message, or to make a smart guess about what is being said when you cannot clearly hear it. A=Abstract and inferential language/communication. Communicative comprehension also depends on one’s ability to recognize that most language/communication is not intended for literal interpretation. To interpret adequately, one must be able to be flexible enough to make smart guesses about the intended meaning of the message; at times one must pursue the analysis of language/communication to seek the intended meaning. Abstract and inferential meaning is often carried subtly through verbal and nonverbal means of communication. This skill begins to develop around kindergarten and continues through our school years as the messages we are to interpret, both socially and academically, become more abstract. Interpretation depends in part on one’s ability to ‘‘make a guess’’; it also depends on one’s ability to take perspective of another. U=Understanding perspective. This is the ability to understand the emotions, thoughts, beliefs, experiences, motives, and intentions of yourself as well as others. We generally acquire this skill across early development, intuitively. Most students have acquired a solid foundation in this ability between the ages of 4 and 6 years old. The ability to take perspective is key to participation in any type of group (social or academic) as well as interpreting information that requires understanding of other people’s minds such as reading comprehension, history, social studies, etc. Weakness in perspective taking is a significant part of the diagnosis of social cognitive deficits. G=Gestalt processing/getting the big picture. Information is conveyed through concepts and not just facts. When talking in a conversation, the participants intuitively should determine the underlying concept being discussed. When reading, the reader has to follow the overall meaning (concept) rather than just collect a series of facts. Conceptual processing is another key component to understanding social and academic information. Furthermore, difficulty with organizational strategies is born from problems with conceptual processing. H=Humor and human relatedness. Most of the clients I work with actually have a very good sense of humor, but they feel anxious since they miss many of the subtle cues that help them to understand how to participate successfully with others. It is important for educators/parents to work compassionately and with humor to help minimize the anxiety the children are experiencing. At the same time, many of our clients use humor inappropriately; direct lessons about this topic should be taught often. FURTHER INFORMATION Fullerton, A., Stratton, J., Coyne, P., & Gray, S. (1996). Higher functioning adolescents and young adults with autism. Austin, TX: Pro-Ed. Howlin, P., Baron-Cohen, S., & Hadwin, J. (1999). Teaching children with autism to mind read: A practical guide. New York: Wiley and Sons.
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IMITATION/MODELING Kunce, L., & Mesibov, G. (1998). Educational approaches to high-functioning autism and Asperger syndrome. In E. Schopler, G. Mesibov, & L. Kunce (Eds.), Asperger syndrome or high-functioning autism? (pp. 227–263). New York: Plenum Press. Myles, B. S., & Adreon, D. (2001). Asperger syndrome and adolescence: Practical solutions for school success. Shawnee Mission, KS: Autism Asperger Publishing Company. Winner, M. (2000). Inside out: What makes the person with social cognitive deficits tick? San Jose, CA: Michelle Garcia Winner. Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Michelle Garcia Winner.
MICHELLE GARCIA WINNER
AND JAMIE
RIVETTS
IMAGINATION Delays or differences in the development of imagination are characteristic of autism spectrum disorders (APA, 2000). Difficulties in the area of imagination first manifest in a lack of pretend play appropriate to a child’s developmental level. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities are further associated with problems in imagination. Imagination is the process of producing ideas or mental images in the mind of that which is not present or has not been experienced. Further, imagination involves recombining experiences to solve problems in a flexible, creative, and resourceful fashion (for reviews, see Jarrold, 2003; Leslie, 1987; Wolfberg, 1999, 2003). REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Jarrold, C. (2003). A review of research into pretend play in autism. Autism: The International Journal of Research and Practice, 7(4), 379–390. Leslie, A. M. (1987). Pretense and representation: The origins of ‘‘theory of mind.’’ Psychological Review, 94, 412–426. Wolfberg, P. J. (1999). Play and imagination in children with autism. New York: Teachers College Press, Columbia University. Wolfberg, P. J. (2003). Peer play and the autism spectrum: The art of guiding children’s socialization and imagination. Shawnee Mission, KS: Autism Asperger Publishing Company.
PAMELA WOLFBERG IMITATION/MODELING From infancy, typical development includes imitation of caregivers. As those with autism spectrum disorders often have challenges with verbal and motor imitation skills, teaching these building blocks is critical. An imitation or modeling program may be developmental, behavioral, or mixed in its approach, but the programming usually includes the child’s motivation and targeted objectives. FURTHER INFORMATION Dapretto, M., Davies, M. S., Pfeifer, J. H., Scott, A. A., Sigman, M., Bookheimer, et al. (2005). Understanding emotions in others: Mirror neuron dysfunction in children with autism spectrum disorders [Electronic version]. Nature Neuroscience, 9, 28–30. Ingersoll, B., & Schreiberman, L. (2006). Teaching reciprocal imitation skills to young children with autism using a naturalistic behavioral approach: Effects on language, pretend play, and joint attention. Journal of Autism and Developmental Disorders, 36, 487–505.
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IMMUNOGLOBULIN Quill, K. A. (2000). Do watch listen say: Social and communication intervention for children with autism. Baltimore: Brookes Publishing Co. Rogers, S. (1999). An examination of the imitation deficit in autism. In J. Nadel & G. Butterworth (Eds.), Imitation in infancy (pp. 254–279). Cambridge: Cambridge University Press.
PAUL G. LACAVA IMMUNOGLOBULIN Immunoglobulin is a protein produced by plasma cells that plays an essential role in defending the body from foreign substances, like bacteria. JEANNE HOLVERSTOTT IMMUNOLOGICAL TESTS Immunological tests may be skin tests in which the skin is scratched and a serum of some allergen like animal dander is applied. A raised wheal or local reaction indicates an allergy. There are many other forms of immunological tests that check for antibodies or antigens indicating the presence or absence of a particular disease. ABO blood typing is a common example. Blood testing for many diseases, from rheumatoid arthritis to infectious mononucleosis to HIV, are also immunological tests. BRUCE BASSITY IMMUNOTHERAPY Immunotherapy commonly refers to a type of treatment for environmental allergies where the body is desensitized to allergens by giving gradually larger doses of the allergen by injection over a period of many months to several years. It also refers to various drug treatments to stimulate or suppress the immune system. Immune stimulating drugs such as interferon and interleukin are used to treat cancers, and immune suppressive substances are used to treat autoimmune diseases such as rheumatoid arthritis and prevent rejection of transplanted organs. See also allergy. BRUCE BASSITY IMPAIRMENT Impairment refers to the reduced function or loss of any body part (i.e., hearing loss translates to a hearing impairment). KATHERINE E. COOK INCIDENCE Related to prevalence, incidence is the number of new cases of a specific condition, disease, etc. over a period of time. Incidence levels are typically calculated for 1-year periods and are often presented as a percentage of a population (e.g., 4 percent of all school-aged children). For example, researchers could calculate all the new cases of autism in a population over a 1-year period. As with prevalence, the incidence of autism is also controversial, and much research is needed to clear up issues regarding both how many persons have autism and how many new cases of autism are occurring each year. 176
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FURTHER INFORMATION Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33, 365–382. Rutter, M. (2005). Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Paediatrica, 94, 2–15.
PAUL G. LACAVA INCIDENTAL TEACHING Incidental teaching was designed to teach new skills within ongoing, typical activities utilizing children’s interests to increase motivation for learning (McGee, Daly, & Jacobs, 1994). Table 4 shows the essential steps in implementing incidental teaching as well as an example of how each step may be implemented. Table 4. Essential Steps in Incidental Teaching Steps
Example
The teacher or parent chooses an educational objective. The adult arranges the environment to encourage the student motivation and to attract interest in the materials related to teaching the objective.
Labeling the letters of the alphabet.
The child shows interest in the materials through verbalization or gesture, thus initiating the teaching session. The adult encourages an elaboration on the initiation. Ways to encourage elaborated responses include: Ask a question (e.g., ‘‘What color car do you want?’’ or, ‘‘Where is the car?’’) Make a gesture, sound, or word (e.g., point to the blue car) Model the desired response (e.g., ‘‘blue car’’) Child’s response If the child responds correctly to the prompt, the adult provides specific praise and gives the child brief access to the materials. If the child does not respond or responds incorrectly, the adult provides up to three more prompts. Once the child responds correctly, he or she receives praise and access to the materials. The adult ‘‘takes a turn’’ with the materials and the steps begin again. The incidental teaching session should end with success, be brief, and end once the child loses interest.
Eli enjoys puzzles. His teacher, Miss May, finds a puzzle with the letters of the alphabet. During center time, while Eli is working on puzzles, Miss May puts the puzzle on the table with the letters in a clear container that Eli is unable to open. Eli points to the box and says, ‘‘letters.’’
Miss May opens the box and holds up the letter R, asking, ‘‘What letter do you want?’’
Eli says, ‘‘Letter R,’’ so Miss May says, ‘‘That’s right! It’s the letter R!’’ and allows him to put the letter in the puzzle. Eli repeats, ‘‘Letter,’’ so Miss May says, ‘‘Letter R.’’ Eli repeats, ‘‘Letter R,’’ so Miss May says, ‘‘Right, that’s R!’’ and allows him to put the letter in the puzzle. Miss May closes the box again and waits for Eli to say, ‘‘Letter,’’ or point to the box.
Source: McGee, Morrier, & Daly, 1999.
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Incidental teaching is an efficient and positive strategy in several ways. It is likely that integrating instruction of new skills into typical, on-going activities promotes generalization of skills (McGee et al., 1999). Moreover, social skills, which are deficient in individuals with ASD, are integral to incidental teaching sessions. That is, interaction is required during the course of incidental teaching instruction. Additionally, incidental teaching is based in student motivation and initiation, thus encouraging student participation and decreasing the need for secondary reinforcement (e.g., rewards). Families are also able to integrate incidental teaching into typical daily routines by finding ways to encourage their children to elaborate during everyday activities (e.g., dinner time, outside play, bed time). SUPPORT FOR INCIDENTAL TEACHING IN THE PROFESSIONAL LITERATURE AND RESEARCH Incidental teaching has been demonstrated to be an effective method of teaching sociocommunicative skills and to promote generalization of those skills. This strategy has been used with typically developing children (Hart & Risley, 1980) and individuals with autism spectrum disorders (ASD; McGee, Krantz, & McClannahan, 1986). Incidental teaching has been found to be more effective than clinical, teacher-directed teaching methods in decreasing dependency on prompts and cues and as or more effective then such methods in teaching new skills, such as prepositions (McGee, Krantz, & McClannahan, 1985), adjectives (Miranda-Linne & Melin, 1992), and spontaneous speech (Charlop-Christy & Carpenter, 2000). Peers have been trained to implement incidental teaching with individuals with ASD, resulting in increased speech and social interactions (Farmer-Dougan, 1994). Additionally, incidental teaching has been used with children with ASD to teach academic skills such as reading (McGee et al., 1986). ASSESSMENT OF SKILLS DURING INCIDENTAL TEACHING Evaluation should take place during teaching sessions, within other settings, with a variety of communicative partners, and with a variety of instructional materials to ensure that generalization takes place. Data should be collected frequently to make certain that the child is making progress. If the data do not show improvement, another strategy should be considered or the method of delivery should be assessed to judge if changes are necessary. When assessing a child’s skills, probe data should be used (McGee et al., 1985). Probe data collection may take place before a teaching session begins and in the setting in which prior teaching has taken place. The order of presentation of the materials should be random, so the adult can be sure that the child has not simply learned a pattern of responding. The child may receive reinforcement (e.g., praise, edibles), but it should not be connected to the correctness of his or her responses (e.g., provide praise for following directions). When collecting probe data, unlike in the middle of a teaching session during which the adult would wait for the child to initiate the session by showing interest in an item with a gesture or verbalization, the adult would initiate the data collection session by asking the child elaboration questions (e.g., ‘‘where is the juice?’’ might be asked to check for use of prepositions). Correct responses occur when the child uses a correct elaboration spontaneously or within approximately 5 seconds of the adult’s question (McGee et al., 1985). Errors are those exchanges in 178
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Table 5. Data Collection Sheet: Sample
Question Materials asked
Desired response (elaboration) from student
Did student respond without prompting?
If not, what prompt(s) was (were) required?
09/23 Snack time
Cookies
‘‘Square’’
No
09/24 Snack time
Cookies
‘‘Square’’
No
Verbal: ‘‘say ‘square’’’ Verbal: ‘‘say ‘square’’’
09/25 Snack time
Cookies
‘‘Square’’
Yes
Date
Environment
‘‘What shape is this cookie?’’ ‘‘What shape is this cookie?’’ ‘‘What shape is this cookie?’’
Student: Beth Educational objective: Beth will use the attribute of shape to make detailed requests.
which the child does not respond or responds more than approximately 5 seconds after the adult’s question, or the child responds incorrectly (e.g., asks for a circle cookie when the cookies are squares). In the case of an error during data collection, the adult would not prompt a correct response and the child would not receive the item. Therefore, it is important to keep the data collection sessions short to prevent frustration. A sample of a completed data collection sheet is provided in Table 5. REFERENCES Charlop-Christy, M. H., & Carpenter, M. H. (2000). Modified incidental teaching sessions: A procedure for parents to increase spontaneous speech in their children with autism. Journal of Positive Behavior Interventions, 2(2), 98–112. Farmer-Dougan, V. (1994). Increasing requesting by adults with developmental disabilities using incidental teaching with peers. Journal of Applied Behavior Analysis, 27(3), 533–544. Hart, B. M., & Risley, T. R. (1980). In vivo language intervention: Unanticipated general effects. Journal of Applied Behavior Analysis, 13(3), 407–432. McGee, G. G., Daly, T., & Jacobs, H. A. (1994). The Walden Preschool. In S. L. Harris & J. S. Handleman (Eds.) Preschool education programs for children with autism (pp. 127–162). Austin, TX: Pro-Ed. McGee, G. G., Krantz, P. J., & McClannahan, L. E. (1985). The facilitative effects of incidental teaching on preposition use by autistic children. Journal of Applied Behavior Analysis, 18(1), 17–31. McGee, G. G., Krantz, P. J., & McClannahan, L. E. (1986). An extension of incidental teaching procedures to reading instruction for autistic children. Journal of Applied Behavior Analysis, 19(2), 147–157. McGee, G. G., Morrier, M. J., & Daly, T. (1999). An incidental teaching approach to early intervention for toddlers with autism. Journal of the Association for the Persons with Severe Handicaps, 24(3), 133–146. Miranda-Linne, F., & Melin, L. (1992). Acquisition, generalization, and spontaneous use of color adjectives: A comparison of incidental teaching and traditional discrete-trial procedures for children with autism. Research in Developmental Disabilities, 13(3), 191–210.
JENNIFER B. GANZ INCIDENT REPORT An incident report is a written summary that documents behavior incidents, especially situations in which someone is hurt. An incident report usually contains a 179
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description of the behavior, the antecedent, individuals involved, when and where the behavior occurred, action taken by staff, and injuries, if applicable. THERESA L. EARLES-VOLLRATH
INCLUSION New Zealand scholar Keith Ballard defines inclusion as: Inclusive education means education that is non-discriminatory in terms of disability, culture, gender or other aspects of students or staff that are assigned significance by a society. It involves all students in a community, with no exceptions and irrespective of their intellectual, physical, sensory or other difference, having equal rights to access the culturally valued curriculum of their society as full time valued members of age-appropriate mainstream classrooms. (Ballard, 1999, p. 1)
According to Meijer and his colleagues (Pijl & Meijer, 1997), inclusion is to use different instructional strategies to teach all kinds of students under the same education system. Mittler (2000), on the other hand, believes that inclusion is to see every individual as a whole and put every child together to let them learn, work, and play together. Smith and his colleagues (Smith, Polloway, Patton, & Dowdy, 1998) claim that inclusion is to put students in a regular classroom from the very beginning of their school lives, and provide individualized service as necessary. In short, the inclusion concept highlights that everyone is equal and should stand on the same position at the starting point with the others even though they have different abilities and backgrounds. REFERENCES Ballard, K. (1999). International voice: An introduction. In K. Ballard (Ed.), Inclusive education: International voice on disability and justice. London: Taylor & Francis. Mittler, P. (2000). Working towards inclusive education: Social context. London: David Fulton. Pijl, S. J., & Meijer, C. J. W. (1997). Factors in inclusion: A framework. In S. Pijl, C. J. W. Meijer, & S. Hegarty (Eds.) Inclusive education: A global agenda (pp. 8–13). London and New York: Routledge. Smith, T. E., Polloway, E. A., Patton, J. R., & Dowdy, C. A. (1998). Teaching students with special needs in inclusive settings. Boston: Allyn & Bacon.
KAI-CHIEN TIEN
INDEPENDENT EMPLOYMENT For those who are quite capable of self-directed activities, independent employment may prove to be a desirable option. Individuals with autism spectrum disorders (ASDs) who consider this idea must realize that even though they may not require notable accommodations at work, they may have to put effort into improving skills that help them maintain a job in a competitive situation such as taking directions, working in group situations, or knowing what individual tasks are most important to successful completion of their job. It is also advisable to choose when and where to disclose information about yourself or diagnosis in order to advocate for minor accommodations that could be the difference for successful independent employment or the need for a more supervised employment option. 180
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Self-employment is another form of independent employment option where people capitalize on their strengths by selling their knowledge or skills to customers who need the services. Like any other self-employed person, those who choose this option must be very good at time and money management, because the availability of either one may vary with the workload. Scheduling, estimating required resources, managing cash-flow, marketing yourself, and bookkeeping are all necessary functions that do not necessarily require being completed independently to make them occur. With careful assessment and reflection of personal interests, passions, and abilities, independent or self-employment could be the key to a career or just plain paying the bills. FURTHER INFORMATION Shore, S., & Rastelli, L. (2006). Understanding autism for dummies. Indianapolis, IN: Wiley Publishing, Inc.
SHERRY MOYER
INDICATORS OF SENSORY PROCESSING DISORDER In the Indicators of Sensory Processing Disorder (Abrash, 1996), respondents are requested to place a mark beside observed behaviors across several sensory and regulatory areas including tactile, proprioception, vision, auditory, gustatory (taste), olfactory (smell), vestibular/kinesthetic, chemical regulation, arousal and attending and social consciousness. Following completion of this checklist, a determination can be made by an occupational therapist or related professional as to whether or not to pursue further observation and/or assessment. Information gleaned from the checklist can also serve as a catalyst for discussion between the therapist and teacher as a way of arriving at basic interventions that can be implemented in the classroom. REFERENCE Abrash, A. (1996). Clinical Connection, 9(3), 15–17.
LISA ROBBINS
INDIVIDUALIZED EDUCATION PROGRAM (IEP) Every student in a public school system that receives special education and/or related services must have an Individualized Education Program (IEP) as regulated by federal law. An IEP for a student must be individualized to the student’s strengths and needs. The IEP is developed by a team, which consists of the student (when appropriate according to age and ability to participate), parents or guardians, teachers, school administrators, related service providers, school psychologist, and other support personnel. Other members of the IEP team can include the school counselor, therapists outside of the school environment, and any other person directly involved with the student. Collaboration among the individuals on an IEP team directly relates to creating an effective plan for the student to succeed. Each IEP is mandated to have certain components by the Individuals with Disabilities Education Act (IDEA, 2004). This law outlines the components that each IEP 181
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must have, even though school districts and states may use different forms (Drasgow, Yell, & Robinson, 2001). The components in an IEP are as follows: ¥ Current performance or present levels of performance: The present levels of performance must describe how the student is performing in school. Evaluation results from achievement testing, observations, and testing from related services providers are recorded in this section. Another required part of the present level of performance is the statement of how the student’s disability affects his or her involvement and progress in the general education classroom. ¥ Annual goals: Each goal is specifically written to be accomplished by the student in one year. Goals are broken down into objectives or benchmarks that lead to the annual goal. Goals may cover academic subjects, social or behavior needs, speech needs, gross motor or occupational needs, and any other need that is required for the student to succeed in school. Goals must be written so they can be objectively measured. ¥ Special education and related services: Each IEP must reflect supplementary aids and services as well as modifications and accommodations (e.g., eating lunch in a quiet room) that the student receives. Also listed are the special education and related services received by the child. ¥ Participation with peers without disabilities: This component of the IEP states the extent (if any) to which the student will not participate with peers without disabilities. ¥ Assessment: Each IEP must outline the modifications, if any, that are needed for state and district-wide tests. If the testing is not appropriate for the student, an explanation must be provided and an alternative testing must be provided. ¥ Service plan: Every related service and special education service must record the duration (daily or weekly) and setting of services. ¥ Transition service needs and services to be provided: Upon a child’s turning 14 years old, the IEP must explain the courses he or she needs to take to transition from school to the working environment. ¥ Age of majority: One year before the student reaches the age of majority, usually age 18, the rights of the student must be explained to the student. These rights are usually transferred from the parents to the student at that time. ¥ Measuring progress: Each IEP must show how the student’s progress will be measured and how the parents will be informed of this progress.
WRITING THE IEP AND IMPLEMENTING THE IEP When writing the IEP, there are several factors to consider. These needs are as follows: (a) behavior that interferes with the student’s learning or the learning of others, (b) a limited proficiency in English, (c) special communication needs, (d) students who are blind or visually impaired, (e) students who are deaf or hearing impaired, and (f) assistive technology needs for the student. To address these factors, strategies and supports must be put into place. When writing the IEP, the team must also include the student’s strengths, needs, and the parent’s ideas for enhancing their child’s education. After the IEP is written, a copy must be provided to the parents, and the parents must give written permission before any special education or related services are provided to their child. It is also beneficial that each member of the IEP team and any other adults that interact with the student on a daily basis have a copy of the IEP. When implementing the IEP, it is helpful to assign a case manager, or someone who is willing to coordinate all special education services and be a contact for the family. Establishing communication between home and school is also beneficial, to aid in problem solving and generalization. Regular progress reports must also be filled out and sent home to report the progress on the student’s goals and objectives. 182
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REVISING THE IEP According to IDEA, the IEP must be reviewed at least once a year. The parents or school may request for the IEP to be reviewed more often than once a year. Each goal must be reviewed to see if the goal has been attained or how much progress has been made toward the goal. New goals must be written if the old goals have been met. In some cases, the parents of the student with an IEP do not agree with what the school recommends as services. In this case, if the parents and school cannot come to terms with an appropriate plan, mediation or due process can occur. REFERENCES Drasgow, E., Yell, M. L., & Robinson, T. R. (2001). Developing legally correct and educationally appropriate IEPs. Remedial and Special Education, 22, 359–373. Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004).
MELISSA L. TRAUTMAN INDIVIDUALIZED FAMILY SERVICE PLAN (IFSP) The Individualized Family Service Plan (IFSP) is a roadmap that a family and child use while receiving service when the child is ages birth to 3 years old. Along with a service coordinator, the family and professional personnel will develop a plan that will outline the services and locations for the child’s early intervention. Information recorded on the IFSP is child specific and requires a separate page for each child in the family. The IFSP is always developed with the family as an equal member of the team. There is only one IFSP plan per family with additional pages added per child. The following IFSP sections will be completed for each child in the family and filed in sequential order to reflect the family’s plan: Cover The cover page must be completed in the presence of the parent. It is the part of the document where the family creates a vision for their family. Each time the service coordinator reviews the plan with the family, they will reexamine the vision statement as well. The vision statement is a fluid document and can be long- or short-term in nature. The parent(s) has the right to change the vision statement without an ‘‘official’’ IFSP review. The vision statement addresses the parents’ hopes for the child as well as what they want their child to learn, know, and accomplish. Parents will also receive information regarding parents’ rights and procedural safeguards. This section of the document will also identify demographics and timelines. It is here that dates of reviews of the IFSP will be recorded as well as information regarding name, birthdays, household size, ethnicity, race, parents, address, communication method used, date of referral, initial IFSP date, school district, and preparation for initial transition date.
Health and Medical Information This section of the document gathers medical information about the child from the parent. Consents could also be obtained in order to collect pertinent medical information from medical professionals.
Evaluations, Assessment for Program Planning, Screening This section is to determine the child’s eligibility for Part C services of the Individuals with Disabilities Education Act (IDEA, 2004). Children who are eligible for Part C
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INDIVIDUALIZED FAMILY SERVICE PLAN (IFSP) services shall receive ongoing assessment in areas of delay for the purpose of gathering additional information to identify strengths and needs as well as appropriate services to meet those needs. Children who are eligible for Part C services due to a diagnosed medical condition shall have an initial and ongoing assessment in all developmental areas for the purpose of program planning.
Family Resources, Priorities, and Concerns Here is where the family will record their concerns and immediate priorities. After completing this assessment, the family will have outlined resources, priorities, and concerns related to their family and child’s development.
Everyday Routines, Activities, and Places Collection of this information is beneficial for two reasons. First, information regarding the family’s interests, routines, and activities are known, Second, these activities can be used as outcome measures on the IFSP. This information assists the service coordinator with helping the child participate in the family activities, culture, and community.
Outcome/Goal Individual outcomes/goals related to the child and family’s needs are defined here. This is not a request for service or items. This is what the parent(s) wants their child or their family to be able to accomplish and what the family needs in order to support their child’s development in the next four months.
Developmental Evaluation/Assessment Evaluations from other professionals (medical professionals, speech pathologists, physical therapists, etc.) can be added in this section.
Summary This section summarizes the fee for service information for the parent, the outcomes, location of service, length of service, and the payment arrangements.
Justification This is completed only if a service(s) that addresses an outcome/goal on the IFSP cannot be provided in the child and family’s everyday routines, activities, and places (natural environments).
Transition Outcome/Goal The team uses this section to assess the child’s current developmental level as they prepare to transition from the early intervention setting into another program.
Transition Documentation Checklist Documentation of the steps that are to be taken to make certain a smooth transition between early intervention and other services exists are kept here. This documentation is to promote a partnership between all agencies involved with the family.
IFSP Signatures and Consents This section documents that the parent/guardian has participated in the IFSP development and that they agree with the plan. A section for obtaining consents from the
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INDIVIDUALIZED HEALTH CARE PLAN (IHCP) parents is available. It also outlines the other members of the team and who needs to receive a copy of the report.
Appendices Several appendices exist to provide information such as a glossary of terms and an early track data dictionary.
The format that a specific document takes may vary from state to state. The important thing to remember is that the IFSP places the focus on helping the child progress not only along developmental lines, but as a member of the family as well. At each level of the plan, the family’s vision, needs, and desires are taken into account. The goal is to create a strong partnership with the family and all individuals serving the child. REFERENCE Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004).
LYNN DUDEK
INDIVIDUALIZED HEALTH CARE PLAN (IHCP) An Individualized Health Care Plan (IHCP) is a document that outlines the diagnoses, services, and outcomes for a medically involved child while at school. Any child with a severe health care need that requires frequent nursing intervention services while at school should have an IHCP. An important part of the IHCP is the Emergency Care Plan. The Emergency Care Plan is required when a chronic condition has the potential to result in a medical emergency. Because school nurses may be assigned to several buildings or have a large number of students, nurses must follow specific guidelines to prioritize students for an IHCP. The National Association of School Nurses (November 2003) has recommended that ‘‘the prioritization of students and their needs is essential and begins by identifying students whose health needs affect their daily functioning, that is, students who: ¥ Are medically fragile with multiple needs. ¥ Require lengthy health care or multiple health care contacts with the nurse or unlicensed assistive personnel during the school day. ¥ Have health needs that are addressed on a daily basis. ¥ Have health needs addressed as part of their IEP or 504 plan.’’
The school nurse is the leader of the school health team. As the leader, the nurse will assess the student’s health status, collect additional information regarding health and safety, and develop a health care plan for the school. The plan will assure school staff and parents that the child is receiving the proper care. The IHCP helps ensure that: ¥ communication between the school nurse and staff, students, and parents is accurate and up-to-date; ¥ safer processes for delegation are in place; ¥ the health plan can be incorporated into a 504 or IEP if necessary;
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INDIVIDUALIZED TRANSITION PLAN ¥ proper safeguards are in place (i.e. Emergency Care Plan); and ¥ advancement of professional school nurses’ practice can take place.
It is also the position of the National Association of School Nurses that the school nurse is the one who should be responsible for writing of the IHCP in collaboration with the student, family, and health care providers. In addition, the school nurse is the one responsible for seeing that the IHCP is implemented and includes periodic evaluation for evidence of desired student outcomes. REFERENCE National Association of School Nurses (November 2003). Individualized Health Care Plans (Position Statement). Silver Spring, MD: Author.
LYNN DUDEK
INDIVIDUALIZED TRANSITION PLAN An Individualized Transition Plan (ITP) is an extension of a student’s Individual Education Plan that looks beyond high school and plans for adulthood. The goal of the ITP is to facilitate a student’s movement from school to the world of adult work, living, and community participation. The ITP takes into consideration the hopes and dreams of the student and outlines the steps that one would need to take to achieve them. According to the Individuals with Disabilities Education Act (IDEA 2004), the ITP must be in place by the age of 16. This is required practice; however, on a more practical level, some professionals recommend that students with autism spectrum disorders start the transition process by the age of 14, if not earlier (Swanson & Smith, in press; Holtz, Owings, & Ziegert, 2006; Schelvan, Swanson, & Smith, 2005; Myles & Adreon, 2001). According to Holtz et al. (2006), each student’s plan will be individualized to meet their postschool needs and may include information such as: (a) assessment of the child’s needs, interests, and abilities; (b) a statement of preferences for education, employment, and adult living; (c) steps to be taken to support achievement of these goals; (d) specific methods and resources to meet these goals, including accommodations, services, and/or skills that are related to the transition goals; (e) instruction on academic, vocational, and living skills; (f) identification of community experiences and skills related to future goals; (g) exploration of service organizations or agencies to provide services and support; and (h) methods for evaluating success of transition activities. To facilitate this process, each individual student will work with their ITP team to determine and design the best course of action to help the student learn or maintain the skills necessary to pursue post-high school endeavors. The ITP team must include the student, parents, or guardians, teachers, and representatives from local agencies (i.e., Vocational Rehabilitation). According to IDEA 2004, the ITP must include ‘‘appropriate measurable postsecondary goals based upon age appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills’’ and ‘‘the transition services (including courses of study) needed to assist the child in reaching those goals.’’ 186
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REFERENCES Holtz, K. D., Owings, N. M., & Ziegert, A. K. (2006). Life journey through autism: A transition guide. Alexandria, VA: Organization for Autism Research. Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004). Myles, B. S., & Adreon, D. (2001). Asperger syndrome and adolescence: Practical solutions for school success. Shawnee Mission, KS: Autism Asperger Publishing Company. Schelvan, R. L., Swanson, T. C., & Smith, S. M. (2005). Making each year successful: Issues in transition. In B. S. Myles (Ed.), Children and youth with Asperger syndrome: Strategies for success in inclusive settings. Thousand Oaks, CA: Corwin Press. Swanson, T. C., & Smith, S. M. (in press). Transition planning for individuals with autism spectrum disorders: Building bridges to the future. In R. Simpson & B. Myles (Eds.), Educating children and youth with autism. Austin, TX: Pro-Ed.
TERRI COOPER SWANSON
INDIVIDUAL PLAN FOR EMPLOYMENT (IPE) An Individual Plan for Employment (IPE) is similar to an Individualized Education Plan (IEP), but the focus is vocational. An IPE is facilitated through Vocational Rehabilitation services (VR), while an IEP is regulated by the school district. VR helps persons with varying degrees of disabilities find appropriate employment and assists them in obtaining independent skills. VR is funded by federal and state monies. Services are based on the individual’s needs and limited to a short period of time. Services may be renewed or changed as necessary (deFur, 2002). VR services generally begin after high school, but they may start earlier depending on the needs of the individual (McDonald, Parker, & Goldberg, 2000). Before an IPE is created, the individual must be determined eligible for services. To be determined eligible, an individual must have a disability that makes it difficult to find work or maintain a job. The individual must also need services provided by VR to prepare for a job, procure a job, or keep a job that fits his personal needs and abilities. Eligibility is based on job-related skills in a setting that is individualized and integrated as appropriate for the individual. Areas assessed may include: mobility, independence, independent living skills, social skills, ability to communicate, work tolerance, and work-related skills (McDonald et al., 2000). The IPE is a plan outlining goals, objectives, and services required by an individual to meet a goal. It is a formal planning process in which goals and objectives, services and the time frame of services, and how the success of the IPE will be monitored are written into a plan (Consumer’s Guide to Maine’s Vocational Rehabilitation Programs, n.d.). A team of people creates the IPE and includes the individual or the individual’s representative and the vocational rehabilitation counselor. Other members may include a vocational evaluator, a casework technician, and another VR counselor (possibly a supervisor of the VR counselor who handles the case), and a parent of the individual if that person requires a guardian (Hayward & Schmidt-Davis, 2003). The Vocational Rehabilitation Act 1973 and its amendments mandate that individuals with disabilities must be actively involved in their own programs while making informed decisions about their goals and vocational services. The IPE must be developed jointly and agreed upon by the consumer and the vocational rehabilitation counselor. If the individual is unable to be actively involved, the parents, guardian, family 187
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member, or other person may make the decision. In such cases where the consumer refuses to sign or disagrees with the IPE, there is no plan. The matter should be discussed and documented, and attempts should be made to settle the concerns and redevelop the plan for employment. If the matter cannot be resolved, the consumer has a right to appeal through the Client Assistance Program (CAP). If resolution is not possible, the consumer’s case will be closed. Each year the consumer or the representative must review the IPE. The employment plan may be reviewed more often as necessary. Changes to the IPE will not take effect until the consumer agrees to the changes and signs the document (New York State Office of Child and Family Services, n.d.). Each IPE has the same set of requirements. The IPE must contain long-term goals for rehabilitation that describe the employment to be gained. The intermediate objectives should relate directly to successful completion of the long-term goal. It will also include the timeline for reaching the employment goal and the criteria to evaluate the objectives and the procedure for evaluation. Specific rehabilitation services to be provided must be included, as well as the services providers. The IPE will list the responsibilities of the state agency and those of the consumer. It will also address the conditions set forth for the services. The IPE includes a statement in the consumer’s wording that describes how they were given information about alternatives such as goals, objectives, services, and service providers. A statement of the consumer’s rights and responsibilities is laid out in the IPE (UT RCEP Online, n.d.). Finally, the IPE includes information about the local Client Assistance Program, assessment of the consumer’s future need for postemployment services, and a listing of benefits that may help pay for the cost of services. Information regarding the need for assistive technology, on-the-job services, and personal assistance may be included if relevant to the individual consumer (New York State Department of Education, 1999). If an individual receiving services under an approved IPE chooses a different vocational goal, the existing IPE will end. The consumer has 30 days to develop a new IPE. If it is not completed in 30 days, all services except those necessary to develop a new IPE will be dropped. Consumers will be notified by letter confirming the IPE is not in effect. The letter will also include the necessary steps to creating a new IPE. If the consumer appeals the end of the IPE, services will continue until a determination is made regarding the IPE (New York State Office of Children and Family Services, n.d.). The goal of the Individual Plan for Employment is to help a consumer find success in employment that meets their personal needs and abilities. In creating a long-term goal it is helpful to consider the following items: employment availability, occupational requirements, medical concerns, and information regarding the consumer’s previous jobs, interests, and strengths. The goal selection should be based on an assessment of vocational rehabilitation needs with the goal of finding placement in an integrated employment setting. Intermediate objectives are in actuality short-term goals, which build toward completion of the long-term goal. It is often helpful to assess the needs of a consumer in the areas of education, vocation, independent living skills, technology, and medical or social areas when creating long-term goals and intermediate objectives (New York State Office of Children and Family Services, n.d.). With the goal of preparing for employment, finding employment, or maintaining a job, the individual consumer and the VR counselor together create Individual Plans for Employment in a collaborative effort. 188
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REFERENCES Consumer’s Guide to Maine’s Vocational Rehabilitation Programs. Section V. (n.d.). Individual plan for Employment. Retrieved June 17, 2005, from http://www.caresinc.org/docs/vrguide/ 005.htm. deFur, S. H. (2002). Transition Planning. A team effort. National Information Center for Children and Youth with Disabilities. Washington, DC. Hayward, B. J., & Schmidt-Davis, H. (2003). Longitudinal study of the vocational rehabilitation services program. Final report 2: VR services and outcomes. Durham: NC: Research Triangle Institute. McDonald, S., Parker, R., & Goldberg, P. (2000). The road to work. An introduction to vocational rehab. A booklet for youth and adults with disabilities, family members and advocates (2nd ed.). Minneapolis, MN: Pacer Center, Inc. New York State Department of Education. Vocational and Educational Services for Individuals with Disabilities. (1999). Individual plan for Employment policy. Retrieved June 15, 2005, from http://www.vesid.nysed.gov/policies/206.htm. New York State Office of Children and Family Services. (n.d.) Individual plan for Employment. Retrieved June 16, 2005, from http://www.ocfs.state.ny.us/main/cbvh/vocrehab_manual/ 06_IPE.htm. UT RCEP Online. The University of Tennessee, Regional Rehabilitation Continuing Education Program. (n.d.) Opportunity to make informed choice. Retrieved June 19, 2005, from http:// web.utk.edu/rrcep4ut/informed/home.html.
VALERIE JANKE REXIN INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA) The Individuals with Disabilities Act (IDEA) became a federal law in 1975 and is currently the primary law governing special education in schools. IDEA ensures the right of individuals with disabilities to have free and appropriate education, as well as requiring schools and school staff to continually monitor and evaluate the individual’s progress. The student’s abilities, needs, and progress are monitored and measured by developing an Individual Education Plan (IEP). In 1997, IDEA was reauthorized, and amendments were added to further protect and benefit the education of individuals with disabilities. Some of the most significant amendments included requiring the consideration of assistive technology, educating the student in the least restrictive environment, and behavioral assessment and intervention. Assistive technology refers to any device that may increase, maintain, or improve the capabilities of a student with a disability. Examples of assistive technology can be as simple as using a pencil grip for a proper pencil grasp, or may be as high tech as using specific word-prediction software on a computer to promote written language. Under IDEA, the student also has the right to be educated with his peers in the least restrictive environment. The reauthorization of IDEA requires that the school specifically state the extent to which the student will and will not participate with nondisabled peers in academic, nonacademic, and extracurricular settings. The amendments to IDEA also promote the use of positive behavioral supports to prevent and intervene upon inappropriate behaviors. It requires the use of a functional behavioral assessment to determine what the interfering behaviors are and their cause. It also requires that the school define the interfering behaviors and provide positive, supportive interventions to prevent or change inappropriate behaviors. IDEA was reauthorized again in 2004 in an attempt to make educators more accountable for their impact on the education and functioning of students with disabilities. Under the new amendments, students with disabilities are required to take state 189
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assessments at their level of functioning. This can mean that students with disabilities take the same assessment as nondisabled peers, take a modified assessment, or take an alternate assessment. A modified assessment is essentially the same assessment the nondisabled peers take, however, the student with a disability is allowed accommodations that meet his needs, such as allowing extra time, typing rather than handwriting answers, or having questions read aloud to him. An alternate assessment generally looks very different from the state-issued assessment, and encompasses more basic, functional academic and life skills. IDEA exists to protect individuals with disabilities from being excluded in the educational setting. Prior to the implementation of this federal law, individuals with disabilities often did not attend school, or were placed in isolated, special education programs without access to the general education curriculum or their nondisabled peers. IDEA continues to be reevaluated by legislators, educators, and individuals with disabilities in an attempt to provide better protection for individuals with disabilities and their families, as well as better guidelines for educators in providing optimal services and learning environment. REFERENCE Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004).
KELLY M. PRESTIA INFANT/TODDLER SENSORY PROFILE The Infant/Toddler Sensory Profile (Dunn, 2002) is designed for children ages 7 to 36 months to be completed by a caregiver or someone else who has daily contact with the child. Reporters are asked to respond to the frequency with which they observe the occurrence of various responses to the basic sensory systems, ranging from almost always to almost never. The responses are scored in an attempt to identify certain patterns of behavior. If areas of sensory processing difficulties are identified, the team working with the child can work to address the relationship between sensory processing and a child’s performance. REFERENCE Dunn, W. (2002). Infant/toddler sensory profile. San Antonio, TX: Harcourt Assessment.
LISA ROBBINS INFORMAL ASSESSMENT Informal assessment measures are nonstandardized approaches for monitoring and evaluating student progress and obtaining information regarding an individual’s strengths and needs. There are a variety of informal assessment measures, including curriculum-based assessments, curriculum-based measurement, criterion-referenced assessments, checklists, work samples, permanent products, observations, questionnaires, and many teacher-made tests. FURTHER INFORMATION Overton, T. (2003). Assessing learners with special needs: An applied approach (4th ed.). Upper Saddle River, NJ: Merrill/Prentice Hall.
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INTEGRATED EMPLOYMENT As implied by its name, the term integrated employment is used to describe the type of employment available for individuals who are capable of working in a community setting. People with disabilities can engage the services of an employment agency, vocational rehabilitation agency, or private job coaches to help match their interests and skills to appropriate employers in the community. To be successful in an integrated employment setting, the individual will need to be able to work with minimal supervision, stay focused on each task required for their job, and perhaps most importantly, know when and how to ask for help. For individuals with autism spectrum disorders, this might be best achieved by utilizing their strengths or areas of special interest to help encourage a successful experience. Just a few ideas might include: guides at museums, computer repair, ticket takers at local sporting events, or dog sitters. Jobs can vary with the skill level and interest of the individual; the possibilities are endless as long as the person functions with reasonable level of independence and more ordinary types of supervision while at work. SHERRY MOYER INTEGRATED PLAY GROUP MODEL (IPG) The Integrated Play Groups (IPG) model was originally developed by Wolfberg (1999, 2003) to address the unique challenges children on the autism spectrum encounter in peer relations and play. Defining features of autism spectrum disorders (ASD) include a ‘‘lack of varied and imaginative or imitative play’’ and a ‘‘failure to develop peer relationships appropriate to developmental level’’ (Charman & Baird, 2002, p. 289). These difficulties are closely connected to characteristic impairments in the development of reciprocal social interaction, communication, and imagination (APA, 2000). Guided by current theory, research, and evidence-based practices, the IPG model reflects a blending of approaches to foster development in each of these areas. The IPG model is designed to support children of diverse ages and abilities on the autism spectrum (novice players) in mutually enjoyed play experiences with typical peers and siblings (expert players). These children regularly play together in small groups under the direction of a qualified facilitator (play guide). Through a carefully constructed system of support, play sessions are tailored to the unique interests and developmental capacities of individual children. A major effort is directed to maximizing children’s developmental potential by capitalizing on each child’s intrinsic motivation to socialize and play. Equal emphasis is placed on teaching the typical peers to be empathetic, responsive, and accepting of children who present differing ways of communicating, relating, and playing. Further, novice and expert players are expected to mediate their own play activities with minimal or no adult guidance. PROGRAM AND ENVIRONMENTAL DESIGN The IPG model was originally developed for children from preschool through elementary school age (approximately 3 to 11 years of age); however, adaptations and extensions of the model are in progress to support both younger and older children. Each IPG is customized for an individual child as a part of his or her educational or therapy program. 191
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Play guides receive training and supervision to set up and carry out IPGs. They include practitioners, parents, and other care providers experienced in working with children with ASD. Play groups include three to five children with a higher ratio of typically developing peers and/or siblings (expert players) to children with special needs (novice players). Expert players are recruited from places where children ordinarily have contact with peers (e.g., school, family friends, neighbors, community). Playmates ideally have some familiarity and attraction to one another and the potential for developing long-lasting friendships. Groups may vary with respect to children’s gender, ages, developmental status, and play interaction styles. The same group of children meets over an extended period of time (6 months or longer), two or more times per week for approximately 30 minutes to an hour. Times may vary depending upon the age and development of the children as well as the context of the intervention (i.e., school-based vs. therapy). IPG programs take place in natural play environments within school, home, community, or therapy settings. These are primarily integrated settings where, given the opportunity, children would naturally play. Play areas are created to be safe, familiar, predictable, and highly motivating, allowing children to comfortably explore and socialize. They are designed with consideration of multiple factors such as size, density, organization, and thematic arrangements of the play area. Play materials include a wide range of sensory motor, exploratory, constructive, and socio-dramatic props with high potential for interactive and imaginative play. In addition, they vary in degree of structure and complexity to accommodate children’s diverse interests, learning styles, and developmental levels. Play sessions are structured by establishing routines and rituals that foster familiarity, predictability, and a cohesive group identity. Personalized visual calendars and schedules help children anticipate the days and times of meetings. Basic rules for fair and courteous behavior and appropriate care of materials are presented at the onset of play groups. Group membership is established by creating a ‘‘club name’’ and associated rituals. Play sessions begin and end with an opening and closing ritual (e.g., greeting, song, and brief discussion of plans and strategies). ASSESSMENT The IPG model includes a comprehensive assessment component that provides a basis for setting appropriate goals, designing effective intervention strategies, and evaluating children’s progress. This includes an observation framework and corresponding assessment tools that focus on documenting children’s social play styles, cognitive/ symbolic and social dimensions of play, communication functions and means, play preferences, and diversity of play. For example, within the symbolic dimension of play, manipulation, functional, and symbolic/pretend play represent acts that are directed towards objects or signify specific events. Within the social dimension of play, isolation, orientation/onlooker, proximity/parallel, common focus, and common goals represent the child’s distance to and involvement with one or more peers. How children communicate within the context of peer play activities is also examined. The functions of communication (e.g., requests for objects, peer interaction and 192
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affection, protests, declarations, and comments) may be measured through a variety of verbal and nonverbal means (including facial expressions, eye gaze, proximity, manipulating a peer’s hand, face, or body, showing or giving objects, gaze shift, gestures, intonation, vocalization, nonfocused or focused echolalia, and one-word or complex speech/sign). Documenting play preferences offers a means to identify and match children’s play interests. Play preferences include a child’s attraction to toys or props, mode of interacting with toys or props, choice of play themes, and attraction to particular playmates. Identifying the number and range of play interests provides a basis for measuring diversity of play. INTERVENTION The IPG intervention, guided participation, was inspired by the work of Vygotsky (1966, 1978). Guided participation is described as the process through which children develop while actively participating in culturally valued activity (in this case, play) with the guidance, support, and challenge of companions who vary in skill and status (Rogoff, 1990). The intervention involves methodically supporting novice and expert players to initiate and incorporate desired activity into socially coordinated play while challenging novice players to practice new and increasingly complex forms of play. Play guides apply the following key set of practices. Monitoring Play Initiations This practice focuses on uncovering novice players’ meaningful attempts to socialize and play by recognizing, interpreting, and responding to their initiations. Play initiations may take both conventional and unconventional forms, and include acts directed to oneself, peers, and materials. Even acts that reflect unusual fascinations or obscure forms of communication are interpreted as purposeful, adaptive, and meaningful attempts to participate in play. These provide a foundation on which to build and extend each novice player’s existing play repertoire, as well as for novice and expert players to establish a mutual focus and coordinate play activities. Scaffolding Play This practice involves building upon the child’s initiations by systematically adjusting assistance to match or slightly exceed the level at which the child is independently able to engage in play with peers (i.e., within the child’s ‘‘zone of proximal development’’; Vygotsky, 1978). The idea is to avoid being so lax that the play falls apart, or so intrusive that it ruins the moment. The key is to find that ever-so-delicate balance for the play to unfold in genuine ways. At times, the play guide sets the stage for play by directing the event and modeling behavior. This involves arranging props, assigning roles, and scripting parts. As the children catch on to the activity, the adult gradually withdraws from the group and redirects the children to one another while extending their play. This includes posing leading questions, commenting on activities, offering suggestions, and giving subtle reminders using verbal and visual cues. Ultimately, the adult moves to and remains on the periphery of the group as a ‘‘secure base.’’ Social-Communication Guidance This practice involves supporting both novice and expert players in using verbal and nonverbal social-communication cues to elicit each other’s attention and sustain 193
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joint engagement in play activities. For example, experts learn how to interpret and respond to subtle or obscure forms of communication in a meaningful way so that novices may be included. Novices learn how to interpret and respond to the complex ways in which expert players communicate, as well as how to communicate in more conventional ways so that they may be more easily understood. Strategies focus on ‘‘what to do’’ and ‘‘what to say’’ to invite peers to play (including reluctant peers), join peers in play, enter peer groups, and maintain and expand interactions in play. Play guides coach the children using custom-made visual supports such as cue cards and posters. Play Guidance This practice encompasses a progression of strategies that support novice players in peer play experiences that are slightly beyond the child’s capacity while fully immersed in the play experience. Play guidance strategies start at the level of the child and move along a continuum of development. Play guides must be well versed in a range of techniques to foster orientation, imitation-mirroring, parallel play, joint focus, joint action, role-enactment, and role-playing. Novices may participate in complex and sophisticated play scripts organized by expert players at their own level of ability, even if participation is minimal. They may carry out play activities and roles that they may not yet fully comprehend. For example, a child inclined to line up objects may incorporate this scheme into a larger play theme of pretending to be a store clerk who is responsible for arranging groceries on a shelf. The idea is to stimulate novices to explore and diversify existing play routines through repeated exposure to the experiences of peers. EFFICACY OF THE IPG MODEL The IPG model has been adopted by numerous schools and programs at the local, national, and international level, and has gained recognition as best practices for children with ASD (see California Department of Education, 1997; Iovannone, Dunlop, Huber, & Kincaid, 2003). This research-based model specifically incorporates elements that have been shown to be effective in enhancing social interaction, communication, play, and imagination in children with ASD. Further, the goals and methods are consistent with the recommendations of the National Research Council (2001), which has ranked the teaching of play skills with peers among the six types of interventions that should have priority in the design and delivery of effective educational programs for children with ASD. To evaluate the efficacy of the IPG model, a series of experimental and exploratory studies have been conducted over the years (for a recent overview, see Wolfberg & Schuler, in press). This research has focused on documenting outcomes for novice and expert players, as well as perceptions of play guides and families (Gonsier-Gerdin, 1993; Lantz, Nelson, & Loftin, 2004; Mikaelian, 2003; O’Connor, 1999; Wolfberg, 1988; 1994; 1999; Wolfberg & Schuler, 1992; 1993; Yang, Wolfberg, Wu, & Hwu, 2003; Zercher, Hunt, Schuler, & Webster, 2001). More recently, several studies examined the efficacy of combining the IPG model with sensory integration therapy (Antipolo & Dichoso, 2003; Mahnken, Baiardo, Naess, Pechter, & Richardson, 2004; Schaefer & Atwood, 2003). 194
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Although it is not feasible to determine which components of the intervention were most pertinent to the observed changes (since the IPG model is a comprehensive intervention), the cumulative findings suggest that the intervention as a whole contributed to generalized and socially valued gains. The system of support involving explicit guidance and peer mediation contributed to the children’s social and symbolic development. Guided participation in intrinsically motivating play activity with more competent peers provided novice players the opportunity to refine their imitation skills and practice more advanced forms of social communication and play. Finally, the IPG model stimulated reciprocal friendships between children with ASD and typical peers through active engagement in mutually enjoyed play experiences. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Antipolo, L., & Dichoso, D. (2003). The effects of integrated play groups with sensory integration on the play and social skills of children with sensory integrative dysfunction. Unpublished master’s thesis, San Jose State University, San Jose, CA. California Department of Education. (1997). Best practices for designing and delivering effective programs for individuals with autistic spectrum disorders. Produced by RiSE, Resources in Special Education, Sacramento, CA. Charman, T., & Baird, G. (2002) Practitioner review: Diagnosis of autistic spectrum disorder in 2 and 3 year old children. Journal of Child Psychology & Psychiatry, 43, 289–305. Charman, T., & Baron-Cohen, S. (1997). Brief report: Prompted pretend play in autism. Journal of Autism and Developmental Disorders, 27, 325–32. Gonsier-Gerdin, J. (1993). Elementary school children’s perspectives on peers with disabilities in the context of integrated play groups. Unpublished position paper, University of California– Berkeley. Iovannone, R., Dunlop, G., Huber, H., & Kincaid, D. (2003). Effective educational practices for students with ASD. Focus on Autism and Other Developmental Disabilities, 18(3), 150–165. Lantz, J. F., Nelson, J. M., & Loftin, R. L. (2004). Guiding children with autism in play: Applying the integrated play group model in school settings. Exceptional Children, 37(2), 8–14. Mahnken, H., Baiardo, C., Naess, M., Pechter, R., & Richardson, P. (2004). Integrated play groups and sensory integration for a child diagnosed with ASD: A case study. Poster presented at the American Occupational Therapy Association Annual Conference, Minneapolis, MI. Mikaelian, B. (2003). Increasing language through sibling and peer support play. Unpublished master’s thesis, San Francisco State University, CA. National Research Council. (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. O’Connor, T. (1999). Teacher perspectives of facilitated play in integrated play groups. Unpublished master’s thesis, San Francisco State University, CA. Rogoff, B. (1990). Apprenticeship in thinking. New York: Oxford University Press. Schaefer, S., & Atwood, A. (2003). The effects of sensory integration therapy paired with integrated play groups on the social and play behaviors of children with autistic spectrum disorder. Unpublished master’s thesis, San Jose State University, San Jose, CA. Vygotsky, L. S. (1966). Play and its role in the mental development of the child (translation from 1933). Soviet Psychology, 12, 6–18. Vygotsky, L. S. (1978). Mind in society: The development of higher psychological processes (translation from 1932). Cambridge, MA: Harvard University Press. Wolfberg, P. J. (1988). Integrated play groups for children with autism and related disorders. Unpublished master’s field study, San Francisco State University, CA.
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INTELLIGENCE TESTS Wolfberg, P. J. (1994). Case illustrations of emerging social relations and symbolic activity in children with autism through supported peer play. Doctoral dissertation, University of California at Berkeley with San Francisco State University. Dissertation Abstracts International, #9505068. Wolfberg, P. J. (1999). Play and imagination in children with autism. New York: Teachers College Press, Columbia University. Wolfberg, P. J. (2003). Peer play and the autism spectrum: The art of guiding children’s socialization and imagination. Shawnee, KS: Autism Asperger Publishing Company. Wolfberg, P. J., & Schuler, A. L. (1992). Integrated play groups project: Final evaluation report (Contract # HO86D90016). Washington, DC: Department of Education, OSERS. Wolfberg, P. J., & Schuler, A. L. (1993). Integrated play groups: A model for promoting the social and cognitive dimensions of play in children with autism. Journal of Autism and Developmental Disorders, 23(3), 467–489. Wolfberg, P. J., & Schuler, A. L. (in press). Promoting social reciprocity and symbolic representation in children with ASD. In T. Charman & W. Stone (Eds.), Early social communication in autism spectrum disorders. New York: Guildford Publications. Yang, T., Wolfberg, P. J., Wu, S., & Hwu, P. (2003). Supporting children on the autism spectrum in peer play at home and school: Piloting the integrated play groups model in Taiwan. Autism: The International Journal of Research and Practice, 7(4), 437–453. Zercher, C., Hunt, P., Schuler, A. L., & Webster, J. (2001). Increasing joint attention, play and language through peer supported play. Autism: The International Journal of Research and Practice, 5, 374–398.
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INTELLIGENCE TESTS Intelligence tests assess samples of behavior to measure one’s aptitude and intelligence. The result of these assessments is an Intelligence Quotient (IQ) score. Intelligence tests can be given in group or individual formats. Individually administered intelligence tests are primarily used in special education for identification, eligibility, and educational placement decisions. FURTHER INFORMATION Salvia, J., & Ysseldyke, J. E. (2007). Assessment: In special and inclusive education (10th ed.). Boston: Houghton Mifflin Company. Taylor, R. L. (2006). Assessment of exceptional students: Educational and psychological procedures (7th ed.). Needham Heights, MA: Allyn and Bacon.
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INTERNAL REVIEW BOARD (IRB) An Internal Review Board (IRB), also known as the Human Subjects Review Committee, is a group of individuals who are charged with the protection of human subjects used in research at universities and other institutions. An IRB reviews proposed research projects to ensure that the protocol outlined in the study complies with specified regulations and with other ethical and professional standards for use of human subjects in research. The committee also evaluates proposed projects to ensure that potential research subjects will be protected from harm and that they will be treated respectfully and fairly. THERESA L. EARLES-VOLLRATH 196
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INTERNATIONAL STATISTICAL CLASSIFICATION OF DISEASES AND RELATED HEALTH PROBLEMS (ICD) International Statistical Classification of Diseases and Related Health Problems (ICD), published by the World Health Organization (WHO), is a guidebook commonly used by mental health professionals to diagnose mental disorders outside of the United States. Like the Diagnostic and Statistical Manual of Mental Disorders (APA, 2000), the ICD uses medical concepts and terminology, classifies disorders based on criteria into distinct categories and subcategories, and is revised periodically. The ICD is currently in its tenth edition. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
JEANNE HOLVERSTOTT INTEROBSERVER AGREEMENT/RELIABILITY Interobserver agreement or interobserver reliability refers to having two or more observers record the same data, on the same student(s), at the same time, but independent of each other. The data of all observers are then compared, and a reliability coefficient or a percent of agreement is calculated. While there is set standard for acceptable interobserver reliability, the accepted standard among some behavior analysts is a coefficient of approximately 90 (Alberto & Troutman, 1995). The higher the reliability coefficient or percent of agreement, the more accurate and reliable the data. REFERENCE Alberto, P. A., & Troutman, A. C. (1995). Applied behavior analysis for teachers (4th ed). Upper Saddle River, NJ: Prentice Hall.
THERESA L. EARLES-VOLLRATH INTRAVERBAL As first described by B. F. Skinner (1957), an intraverbal is the verbal response to a verbal stimulus that has no direct verbal relation to the stimulus. For example, when someone asks another, ‘‘What is your favorite food?’’ the person responding would say, ‘‘lasagna.’’ The response is correct and is reinforced within the verbal exchange between two people, but the response does not directly relate word for word to the verbal stimulus. A directly related response to the question would be, ‘‘My favorite food is lasagna’’ (Lerman, Parten, Addison, Vorndran, & Volkert et al., 2005). REFERENCES Lerman, D. C., Parten, M., Addison, L. R., Vorndran, C. M., Volkert, V. M., & Kodak, T. (2005). A methodology for assessing the functions of emerging speech in children with developmental disabilities. Journal of Applied Behavior Analysis, 38(3), 303–316. Skinner, B. F. (1957). Verbal behavior. New York: Appleton-Century-Crofts.
TARA MIHOK IRLEN LENSES Irlen lenses are color-tinted lenses used to reduce vision difficulties. In 1980, Olive Meares was one of the first people to note the signs and symptoms of visual distress in 197
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school-age children. Helen Irlen, the name most commonly identified with colored lenses, presented findings in 1983 that her students had less visual distortions while reading if they used a transparent colored overlay (Wilkins, 2003). There are a variety of terms that are used in conjunction with the light-sensitivity disorder in which one needs colored overlays or colored lenses to manage perceptual distortions. Helen Irlen originally coined the phrase scoptic sensitivity syndrome (SSS) (1991), however the Irlen Institute now uses the phrase Irlen syndrome (Irlen syndrome/Scoptic syndrome, 1991). Others prefer the term Meares-Irlen syndrome to include Olive Meares, who was one of the first proponents of using color to reduce vision difficulties (Wilkins, 2003). Irlen syndrome is not a vision problem but rather a difficulty with the visual perceptual system. It occurs in some individuals with learning or reading disorders, autism, and other developmental disorders. Individuals with SSS experience visual stress, which leads to distortions while reading or viewing the world around them. Difficulties may be expressed through problems with light brightness or types of lighting, movement of letters or words on the page, difficulty with high contrast situations, and difficulty reading groups of letters (Edleson, n.d.). There are specific symptoms related to SSS/Irlen syndrome. Some people may experience difficulty reading for long periods of time. Others find their reading to be inefficient. Some readers are unable to skim or speed read. Strain and fatigue is often reported after reading. Phrases read aloud may sound hesitant or choppy. The reader may have poor comprehension skills and difficulty retaining information. A slow reading rate and high error rates may also be noted in readers (Irlen syndrome/Scoptic syndrome, 1991). Deficiencies in visual skills may lead to poor academic performance. The National Institute of Health estimates that 10 million American children have difficulty reading. Eighty percent of student learning in the classroom depends on the ability of the visual system to process correctly (Stone, 2003). Basic school vision screenings only test for a few learning-related visual skills such as distance, 20/20 eyesight, using the eyes together, and muscle balance. Although states require vision screenings, most leave it to the school district to determine how the testing will be initiated. Typically, school districts do not test for other visual skill concerns. Most people are not aware of the connection between poor academics and visual skill deficiencies. Although the number of children with reading disabilities that are helped by Irlen lenses varies according to different researchers, it is possible that 460,000 to 4.6 million children could be helped by the use of color overlays or tinted lenses (Stone, 2003). Irlen lenses are created to meet the needs of the wearer through a specific testing method. While these lenses are often used for persons with light sensitivities, disorders, and reading disabilities, individuals with autism and other developmental disorders have also worn them with success. REFERENCES Edleson, S. M. (n.d.). Scotopic sensitivity syndrome and the Irlen lens system. Retrieved June 13, 2005, from http://www.autism.org/irlen.html. Irlen, H. (1991). Reading by the colors. Garden City Park, NY: Avery Publishing Group Inc. Irlen syndrome/Scoptic syndrome. (1991). Retrieved June 12, 2005, from http://www.irlen.com/ sss_main.htm.
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IRLEN LENSES Stone, R. (2003). The light barrier. New York: St. Martin’s Press. Wilkins, A. (2003). Reading through colour. London: John Wiley & Sons.
FURTHER INFORMATION Ludlow, A. K., Wilkins, A. J., & Heaton, P. (2006). The effect of coloured overlays on reading ability in children with autism. Journal of Autism and Developmental Disorders. 36, 507–516. Thomson, W. D., & Wilkins, A. J. (2006). Memory for the color of non-monochromatic lights. Color Research and Application, 32, 11–15.
VALERIE JANKE REXIN
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J JOINT ACTION ROUTINES Joint Action Routines (JAR) is an intervention strategy used to scaffold language development for individuals with autism spectrum disorders (ASD). This instructional strategy is known also by names such as Activity Based Strategy (Bricker, 1998), and Sociodramatic Script Training (Goldstein, Wickstrom, Hoyson, Jamieson, & Odom, 1988). The term JAR was coined by Snyder-McLean, Solomonson, McLean, & Sack (1984) who developed this methodology in their work with students with various disabilities, including mental retardation, various language delays, and/or other health impairments. JAR is a routinized series of activities and communication-based interactions between an individual and one or more communicative partners. Those interactions are purposeful and are performed repeatedly and in a certain logical order that the individual has learned. JAR treatment includes features such as a unifying theme, joint focus between one or more communicative partners, a certain number of roles (e.g., chef, waitress, customer), a logical, predetermined sequence of activities, turntaking, repetition, and variation. These elements make JAR an intervention strategy uniquely appropriate to meet the needs of students with language and communication delays in general, and those diagnosed with autism spectrum disorders (ASD), in particular (Goldstein et al., 1988; Prizant, Wetherby, & Rydell, 2000). Professionals also consider JAR a particularly suitable treatment option for individuals with ASD because it borrows elements from both the behavioristic and the naturalistic perspectives, such as reliance on careful planning and enhancement of environmental structures designed to ensure a child’s successful participation in a routine. The features of JAR that reflect a behavioristic approach include the use of repetitions and, depending on the student’s developmental age, routines could also be teacher directed. JAR’s characteristics associated with a naturalistic approach include limiting reinforcers only to those that are intrinsic to a routine, focusing on student-initiated activities in routines, and structuring meaningful contexts for the instruction of new communicative skills. Other strategies employed during the implementation of routines include sabotage, oversight, silly situations and time delay. Sabotage refers to a situation such as when a caregiver offers a child M&M’s in a closed container, causing the child to ask for help to open it. An oversight can happen when a child is offered a bowl of soup with no spoon. A silly situation occurs when a parent gives a child a fork to eat soup.
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Time delay is a technique in which a teacher gradually lengthens the time between a stimulus and a prompt to allow the student more time to provide the expected verbal response. Throughout this time, the teacher keeps eye contact with his student, looking at him expectantly. These procedures are designed to prevent boredom and to create a need to communicate in a child’s natural environment. Snyder-McLean et al. (1984) identified four major categories of routines: routines related to daily living skills, routines that involve preparation of a product, those that focus on a specific theme, and those that involve social games. Routines related to daily living skills entail instruction designed to promote communication skills related to adaptive behavior competency around topics such as bath time, getting out of bed, shopping, eating in a restaurant, using public transportation, and so forth. Routines that involve preparation of a product focus on instruction of language skills that involve activities such as snack preparation, creating an art project, and prevocational readiness (i.e., product assembly). JARs that focus on a theme foster language development around topics of interest to the students and include leisure activities (e.g., picnic, ball game, amusement park activities), or familiar stories. Social cooperative games provide a perfect venue for teaching turn-taking skills, and thus are especially helpful in making concrete for children with ASD the concepts that are inherent in communication, such as the ‘‘back and forth,’’ waiting for a turn, responding based on a partner’s reaction, and so forth. These activities might be of the nature of sharing a game on a computer, playing cards and other table top games, putting a puzzle together, and much more. These routines have been developed for implementation across all age groups and levels of disability: toddlers or young children with developmental age of or below 24 months, preschool- and elementary-age students, and middle- to high school-age students. For infants or young children with a mental age below 24 months, roles may be limited to only adult and child, and might not be exchangeable between them. In addition, the adult might be the sole initiator of routines, which might also have to be simplified in their task complexity and communication requirements. The following are basic guidelines for successfully using JAR with students with ASD: 1. Choose target behaviors that match a student’s current level of performance and which are in line with the IEP objectives. Careful consideration should also be given to students’ age and their familiarity with and interest in the JAR topic. 2. Establish procedures for data collection to measure students’ progress. 3. Design the Joint Action Routines while considering— ¥ the topic, ¥ time and place of implementation, ¥ the roles, ¥ the props needed, ¥ the order of activities, and ¥ the teaching method (i.e., should the routine be taught in a backward chaining fashion, starting with the last task in the chain, or rather, should the first two to three steps be taught first, and so forth). 4. Prepare relevant props. 5. Prepare materials needed. 6. Based on the complexity of a JAR, establish a signal to indicate the beginning and ending of a routine. 7. Introduce the routine.
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The following provides an example of a JAR designed to teach preschoolers with autism to follow one-step instructions, such as ‘‘get tissue,’’ ‘‘throw away,’’ and, ‘‘give me five.’’ Objective: To teach students to follow one-step instructions. Data Collection: Data will be collected weekly on a student’s correct response. A ( ) will indicate a prompted response, and a (+) will indicate a correct independent response. Time and Place: Five repetitions during mealtime (one time a day). The Roles: Adult and child. Props: No props needed. Order of Activities: ¥ Drink or food is ‘‘accidentally’’ spilled. ¥ Teacher exclaims, ‘‘Oh, no!’’ points to the spill and says, ‘‘Get tissue.’’ ¥ Student gets up and takes a tissue. ¥ After child wipes spill, he/she is then told to ‘‘throw (the tissue) away.’’ ¥ Student throws tissue into a waste can. ¥ Teacher says, ‘‘Give me five!’’ ¥ Student ‘‘gives five.’’
JAR serves as a strategy for promoting communication skills in individuals with autism spectrum disorders by providing learners with a context for communication, creating a need for mutual focus and attention between and among communicative partners, encouraging students to tune into a communicative partner’s perspectives, and creating a controlled environment that supports the growth and development of communication skills. REFERENCES Bricker, D. (with Pretti-Frontczak, K., & McComas, N.). (1998). An activity based approach to early intervention (2nd ed.). Baltimore: Brookes Publishing Co. Goldstein, H., Wickstrom, S., Hoyson, M., Jamieson, B., & Odom, S. L. (1988). Effects of sociodramatic script training on social and communicative interaction. Education and Treatment of Children, 11, 97–117. Prizant, B. M., Wetherby, A. M., & Rydell, P. J. (2000). Communication intervention issues for children with autism spectrum disorders. In S. F. Warren & J. Reichle (Series Eds.) & A. M. Wetherby & B. M. Prizant (Vol. Eds.), Communication and language intervention series: Vol. 9. Autism spectrum disorders: A transactional developmental perspective (pp. 193–224). Baltimore: Brookes Publishing Co. Snyder-McLean, L. K., Solomonson, B., McLean, J. E., & Sack, S. (1984). Structuring joint action routines: A strategy for facilitating communication and language development in the classroom. Seminars in Speech and Language, 5, 213–228.
JOSEPHA BEN-ARIEH JOINT ATTENTION Joint Attention involves the shifting of attention from one object of desire back to another object or person. This is a developmental milestone that is typically first seen in young children as they point out objects or direct adults to look at the same object that has gained their interest. Many times infants will point to an object prior to their ability to label all aspects of the object. The use of joint attention coordinates mutual interest to a desired person, place, or thing among two or more communicative
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partners. For example, an infant might point to an airplane in the sky, and the adult holding the child then often labels the item, ‘‘You see a big plane.’’ KATHERINE E. COOK JOURNAL Journals are scholarly compilations of research-based articles in a peer-reviewed format. For a list of journals related to autism spectrum disorders see Appendix C. TERRI COOPER SWANSON
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K KANNER, LEO Leo Kanner (1894–1981) substantially influenced the field of child and adolescent psychiatry by providing the first description of infantile autism (Neumarker, 2003). He is recognized as the first person to formally describe and coin the term autism more than a half century ago (Kanner, 1943). Kanner published a description of this profile based on his case studies in a paper identifying autistic children in 1943 (Kanner, 1943, p. 227), which has become the most quoted work in the literature on autism (AMA-Autism History, n.d.). REFERENCES AMA-Autism History (n.d.). Retrieved July 31, 2006, from http://www.ama.org.br/ autismhistory.htm. Kanner, L. (1943). Autistic Disturbances of Affective Contact. The Nervous Child, 2, 217–250. Neumarker, K. (2003). Leo Kanner—his years in Berlin, 1906–1924: The roots of autistic disorder. History of Psychiatry, 14, 205–218. Sanua, V. (1990). Leo Kanner (1894–1981): The man and the scientist. Child Psychiatry and Human Development, 21(fall), 3–23.
FURTHER INFORMATION Kanner, L. (1946). Irrelevant and metaphorical language in early infantile autism. American Journal of Psychiatry, 103, 242–246.
CAROL L. PITCHLYN
KRUG’S ASPERGER’S DISORDER INDEX Krug’s Asperger’s Disorder Index (KADI) is an assessment tool used to identify individuals with Asperger’s disorder. The KADI enables professionals to correctly differentiate individuals with Asperger’s disorder from individuals with other forms of highfunctioning autism. It can be used as a prescreening scale to immediately determine individuals who do not have Asperger’s disorder. The Krug’s Asperger’s Disorder Index can be administered on individuals ranging from 6 years of age to 22. Information
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associated with the KADI can be used to help assess a student’s educational needs. Administration time ranges from 15 to 20 minutes (Pierangelo & Guiliani, 2006). REFERENCE Pierangelo, R., & Guiliani, C. A. (2006). Assessment in special education: A practical approach. Boston: Allyn & Bacon.
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L LACTOSE INTOLERANCE Lactose intolerance is a gastrointestinal condition in which individuals are intolerant to milk and some dairy products. It may be present from birth or acquired later in life and varies in severity. It is a deficiency of lactase, an enzyme required to absorb lactose (a form of sugar found in milk) from the intestines. Treatment varies from avoidance of dairy products to use of digestive enzyme tablets. BRUCE BASSITY
LANDAU-KLEFFNER SYNDROME Landau-Kleffner syndrome (otherwise known as acquired epileptic aphasia) is a rare disorder involving the loss of language skills after a period of normal development, first described by Landau and Kleffner in 1957. The onset of loss usually occurs between the ages of 3 and 9 years, and is often associated with clear-cut seizures. The loss of language skills is usually gradual, occurring over the course of months, although there are cases where the loss is more rapid. First noted loss is in receptive language skills, with the child becoming increasingly unresponsive to spoken language. Hearing tests however are normal. The loss of receptive skills is followed by loss of expressive abilities. Three different types of presentation are reported: (a) acute loss of language, sometimes in association with encephalopathic illness and/or seizures, with usually good recovery; (b) long, slow deterioration of language, which may be unresponsive to antiepileptic drugs, and moderate or poor recovery; and (c) variable onset during which there may be several episodes of language fluctuation, which, if responsive to antiepileptic drugs, may lead to a good recovery (Lees & Neville, 1996). Types of language difficulty in addition to verbal agnosia (inability to comprehend language) include word-finding difficulties, problems with written language, a range of neologisms and paraphasias, and deficit in prosody. Children with Landau-Kleffner do not usually present with autism spectrum disorder (ASD), although ASD might be considered in some cases due to the similarity of some of the receptive and expressive language difficulties coupled with levels of frustration, behavior difficulties, and sometimes hyperactivity in these children. The differentiating criteria include the fact that this is an aphasia with EEG abnormalities
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typically underlying the loss of skills, and with deficits focusing on language. There are not usually impairments in social interaction of an autistic type, but as noted frustrations, and possibly also underlying neurological deficits, may lead to some social difficulties or behavior problems (e.g., Mantovani, 2000). Tests of general mental ability or cognitive functioning can also help to clarify the selective loss of language skills seen in Landau-Kleffner syndrome versus general loss of cognitive skills in other more progressive childhood dementias (Goodman & Scott, 2005, p. 203). In terms of outcome, Bishop (1985) reviewed the literature and reported that the younger the age of onset the poorer the prognosis for the child. A long-term follow-up by Ripley and Lea (1984) demonstrated that while low language levels were the usual outcome, most of the group had found employment and were living independently as adults. Speech and language therapy programs, antiepileptic medications, and sometimes surgery are considered as possible treatment options (Vance, 1991; Lees & Neville, 1996; Cole et al., 1988). REFERENCES Bishop, D. (1985). Age of onset and outcome in acquired aphasia with convulsive disorder (Landau-Kleffner syndrome). Developmental Medicine and Child Neurology, 27, 705–707. Cole, A. J., Andermann, F., Taylor, L., Olivier, A., Rasmussen, T., Robitaille, Y., et al. (1988). The Landau-Kleffner syndrome of acquired epileptic aphasia: Unusual clinical outcome, surgical experience and absence of encephalitis. Neurology, 38, 31–37. Goodman, R., & Scott, S. (2005). Child psychiatry (2nd ed.). Oxford: Blackwell Publishing. Landau, W. M., & Kleffner, F. (1957). Syndrome of acquired aphasia and convulsive disorder in children. Neurology, 7, 523–530. Lees, J. A., & Neville, B. G. R., (1996). Fit for neurosurgery? RCSLT Bulletin (November 1996), 535, 10–11. Mantovani, J. F. (2000). Autistic regression and Landau-Kleffner syndrome: Progress or confusion? Developmental Medicine and Child Neurology, 42, 349–353. Ripley, K., & Lea, J. (1984). Moorhouse school: A follow up study of receptive aphasic ex-pupils. Hurst Green, Oxted, Surrey: Moorhouse School. Vance, M. (1991). Educational and therapeutic approaches used with a child presenting with acquired aphasia with convulsive disorder (Landau-Kleffner syndrome). Child Learning Teaching and Therapy, 7, 41–60.
FIONA J. SCOTT LEAKY GUT SYNDROME Leaky gut syndrome, also referred to as intestinal permeability, is a medial condition affecting the lining of the intestines. In leaky gut syndrome openings develop between the cells of the intestine that allow in bacteria, toxins, and food. Common symptoms of leaky gut syndrome include chronic muscle or joint pain, blurred thinking, indigestion, gas, mood swings, nervousness, skin rashes, recurrent bladder or yeast infections, constipation, and anxiety. KATHERINE E. COOK LEARNED HELPLESSNESS Learned helplessness was introduced in 1965 by Martin Seligman as the result of a series of experiments with dogs (Seligman, Maier, & Geer, 1968). Based on Pavlov’s classical conditioning experiments, a bell was paired with an unpleasant stimulus, 208
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rather than food. It was expected the dog would move in order to avoid the unpleasant stimulus, however it did not move. The result was an understanding that individuals may reach a frame of mind in which they do not attempt independence or exert effort toward a task. The individual comes to feel that effort would be pointless as it always ends in failure, or that they are incapable of doing something on their own. The overall mindset is that of powerlessness. Learned helplessness is relevant to people with depression and disabilities, and to people coming from at-risk backgrounds. REFERENCE Seligman, M. E., Maier, S. F., & Geer, J. N. (1968). Alleviation of learned helplessness in the dog. Journal of Abnormal Psychology. 73, 256–262.
KATIE BASSITY LEARNING DISORDER Learning disorder is a term that can be used in a variety of ways for a variety of conditions or disabilities. Children and adults with learning disorders tend to have challenges with academic subjects, but may in fact have normal levels of overall intelligence. The term, therefore, is rather broad and nonspecific, and can be interpreted in a variety of ways. Learning disorder is defined legally as: Those children who have a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which disorder may manifest itself in an imperfect ability to listen, think, speak, write, spell or do math calculations. The term includes such conditions as perceptual handicaps, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. (IDEA, 1975)
In contrast to Public Law 94-142, which includes only individuals with normal intelligence (IQ of 70 or higher), the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000) allows for individuals with IQs below 70 and with uneven cognitive profiles, but excludes those whose learning problems are due to known neurological disorders. These differences demonstrate further how opaque usage of the term can be. Currently, learning disorders in the DSM-IV-TR (APA, 2000) are reported to include reading disorder (dyslexia), spelling disorder, mathematics disorder (dyscalculia), disorder of written expression (dysgraphia), social-emotional learning disorder, and more recently, nonverbal learning disorder. Reading disorders, or specific reading difficulties, are perhaps the most common of the aforementioned learning disorders, affecting 3 to 10 percent of children, with research indicating they are up to three times more common in males. Reading disorders are commonly associated with spelling difficulties (Goodman & Scott, 2005). Many learning disorders overlap with other conditions such as autism spectrum disorders (ASD). Research suggests there may be an overrepresentation of dyscalculia in individuals with Asperger syndrome; dyslexia is also commonly seen in individuals with Asperger syndrome, although there is some debate as to whether this is above what may be seen in the general population (Gillberg, 2002). Individuals with ASD are often also reported to have poor handwriting skills, although this may reflect motor difficulties rather than a specific disorder such as dysgraphia (Beversdorf et al., 209
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2001). Nonverbal learning disorder is often confused with Asperger syndrome, and many researchers argue there is little difference between the two, with individuals with nonverbal learning disorder often also meeting criteria for Asperger syndrome or pervasive developmental disorder-not otherwise specified (PDD-NOS) (Dinklage, 2001). These overlaps can often add to the confusion in interpretation and application of the term learning disorder. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Beversdorf, D. Q., Anderson, J. M., Manning, S. E., Anderson, S. L., Nordgren, R. E., Felopulos, G. J., et al. (2001). Brief Report: Macrographia in high-functioning adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 31, 97–100. Dinklage, D. (2001). Asperger’s disorder and nonverbal learning disabilities: How are these two disorders related to each other? Retrieved July 20, 2006, from www.nldontheweb.org/ Dinklage_1.htm. Gillberg, C. (2002). A guide to Asperger syndrome. Cambridge: Cambridge University Press. Goodman, R., & Scott, S. (2005). Child psychiatry (2nd ed.). Oxford: Blackwell. Individuals with Disabilities Education Act, Public Law No. 94-142 (1975).
FIONA J. SCOTT LEARNING STYLES A learning style refers to an individual’s primary learning mode, which identifies instructional techniques most likely to enhance their learning. Learning styles most commonly recognized in the classroom include visual learners (learn best when information is presented in a visual format), auditory learners (learn best when information is presented in an auditory format), and kinesthetic/tactile learners (learn best when hands-on and movement experiences are incorporated in the lesson). KATHERINE E. COOK LEAST RESTRICTIVE ENVIRONMENT (LRE) Children with autism spectrum disorders (ASD) represent a heterogeneous group requiring individualized and highly unique programs. Some approaches have been found to be more beneficial than others. According to Dunlap (1999), a critical key to success is to match specific practices, supports, and services with each student’s unique profile and the individual family’s characteristics. That is, ‘‘Educational personnel are required, through the Individuals with Disabilities Education Act (IDEA) Amendments of 1997, to provide a continuum of individualized supports, services, and placements to students, ranging from inclusion in general education with varying levels of supports to extremely specific services and instruction in specialized settings’’ (Iovannone, Dunlap, Huber, & Kincaid, 2003, p. 153). Planning and placement teams (IEP teams) should consider general education classroom placement as the first option for children with disabilities. Other placement considerations should occur only when supplementary aids and services implemented in the general education setting have not yielded educational benefit for the student. Many children with autism are successfully included in general education classrooms and are learning with typical peers (Wagner, 1998). In particular, peers are often able 210
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to successfully model typical behavior in addition to assist with generalization of skills taught. The IDEA (H.R. 1350 § 612 (a) (5)(A) of IDEA ‘04) requires school personnel to consider the least restrictive environment (LRE) for children with disabilities. This means that students, to the maximum extent appropriate, be educated with their nondisabled peers. Special classes, separate schooling, or other removal of children with disabilities from the general education environment occur only when the nature and severity of the disability are such that education in general education classes with the use of supplementary aids and services cannot be achieved satisfactorily. However, for some students, the general education classroom is the least restrictive environment, while for others it may not afford an appropriate education. Thus, LRE is not always the general education classroom. Considerations for determining the least restrictive environment for an individual child, based on his or her unique characteristics, learning style, and needs, should include: 1. determining appropriate supports, accommodations and modifications to support the child’s access to the general education curriculum; 2. collaborating with families to establish shared preferences for goals, methods, and placement settings (Iovannone et al., 2003); 3. embedding the child’s special interests and preferences in the program methods (Hurth et al., 1999, cited in Iovannone et al., 2003); and 4. clearly identifying the child’s strengths and weaknesses (student profile) to determine intensity of instructional level. (National Research Council, 2001, cited in Iovannone et al., 2003)
In brief, placement decisions should not be based on the student’s disability, but on where the child’s needs may be appropriately addressed. That is, having a diagnosis of autism should not automatically place the student in the school’s or district’s ‘‘autism class or program.’’ No one program, support, or service is likely to meet the needs of all children identified with autism. Schools should provide flexible placement and support options to meet students’ individual goals (Dunlap & Fox, 2002). It is important to note that inclusion, mainstreaming, and LRE are not synonymous. Mainstreaming, a practice that originated in the 1970s, refers to students spending portions of their school day with typical peers. This is generally based on students having achieved the expected behavior and/or academic goals necessary to participate. Inclusion refers to a belief system that drives educational practice and is not merely an issue of a student’s educational placement (McGregor & Vogelsberg, 1998). More recent thinking advocates an inclusive philosophy that entails the student having a sense of belonging to the education community versus inclusion being a place or a program (i.e., the inclusion room). The bottom line throughout the mainstreaming movement has been that the student will adapt and be ready to participate in the general education classroom, and that the general education classroom will not change. In contrast to this perspective, the current inclusion movement assumes that major changes will occur in the general education classroom, ensuring that students with disabilities will ‘‘fit into’’ these classes. Thus, general education classroom curriculum, instructional practices, organization, and so forth are changed to better meet the needs of the students, rather than expecting students to adapt to the classroom. (McLeskey & Waldron, 2000, p. 14)
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Successful inclusion in general education settings for children with autism requires careful planning and implementation of program components to address students’ social and academics needs (Kamps, Barbetta, Leonard, & Delquardi, 1994). Responsible inclusive practice refers to ensuring and maximizing student success in general education classrooms by providing teachers support to meet students’ needs. Such support may involve training, materials, and time to collaborate with colleagues. Responsible inclusive practice calls for educators and parents to reflect on the following questions: What are the educational benefits to the student in the general education classroom, with supplementary aids and services, compared with the educational benefits of a special education classroom? [or other placement options along the continuum] What will be the nonacademic or personal benefits to the student in interactions with nondisabled peers? What will be the effect on the teacher and other students in the general education classroom? How will the team define and measure the success of inclusion? (National Research Council, 2001, p. 179)
Responsible inclusive practice does not mean providing one-to-one instruction in the back of a general education classroom without meaningful interaction with nondisabled peers. This is often referred to as a class-within-a-class. Instead, students need opportunities for interaction with nondisabled peers through both informal and planned activities. Children with autism should receive instruction and support to maximize successful interaction with nondisabled peers (New York State Education Department, Office of Vocational and Educational Services for Individuals with Disabilities, 2001). REFERENCES Dunlap, G. (1999). Consensus, engagement, and family involvement for young children with autism. The Journal of the Association for Persons with Severe Handicaps, 24, 222–225. Dunlap, G., & Fox, L. (2002). The challenge of autism from a large systems perspective. Unpublished manuscript, University of South Florida, Tampa. Individuals with Disabilities Education Act, Public Law No. 101–476 (1990). Individuals with Disabilities Education Act, Public Law No. 108–446 (2004). Iovannone, R., Dunlap, G. Huber, H., & Kincaid, D. (2003). Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 3, 150–165. Kamps, D., Barbetta, P., Leonard, B., & Delquadri, J. (1994). Classwide peer tutoring: An integration strategy to improve reading skills and promote interactions among students with autism and regular education peers. Journal of Applied Behavior Analysis, 27, 49–60. McGregor, G., & Vogelsberg, T. R. (1998). Inclusive schooling practices: Pedagogical and research foundations. Baltimore: Brookes Publishing Co. McLeskey, J., & Waldron, N. L. (2000). Inclusive schools in action: Making differences ordinary. Alexandria, VA: Association for Supervision and Curriculum Development. National Research Council. (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. C. Lord & J. P. McGee (Eds.), Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. New York State Education Department, Office of Vocational and Educational Services for Individuals with Disabilities. (2001). Autism program quality indicators. Albany, NY: Author. Wagner, S. (1998). Inclusive programming for elementary students with autism. Arlington, TX: Future Horizons.
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LEITER INTERNATIONAL PERFORMANCE SCALE The Leiter International Performance Scale is a cognitive assessment tool designed to measure an individual’s nonverbal intelligence. The original Leiter scale was developed by Russell in 1929; the latest version is the Leiter-Revised published in 1997 (Roid & Miller). The Leiter-R includes two batteries, the visualization and reasoning battery (VR) and the attention and memory battery (AM), each consisting of 10 subtests. The subtests in the VR battery are as follows: figure ground, design analogies, form completion, matching, sequential order, repeated patterns, picture context, classification, paper folding, and figure rotation. Subtests in the AM battery include associated pairs, immediate recognition, forward memory, attention sustained, reverse memory, visual coding, spatial memory, delayed pairs, delayed recognition, and attention divided. REFERENCE Roid, G. H., & Miller, L. J. (1997). Leiter International Performance Scale–Revised. Wood Dale, IL: Stoelting.
HYO JUNG LEE LIFE SKILLS AND EDUCATION FOR STUDENTS WITH AUTISM AND OTHER PERVASIVE BEHAVIORAL CHALLENGES (LEAP) LEAP stands for Lifeskills and Education for Students with Autism and other Pervasive Behavioral Challenges. Administered by the Kennedy Krieger Institute in Baltimore, Maryland (Kennedy Krieger Institute, 2005), this 12-month, intensive early intervention special education program is designed to serve students 5–21 years old who are diagnosed with autism or related disorders. The LEAP program, developed in 1984 by Hoyson, Jamieson, and Strain, combines several learning theories with a primary focus on social development. With an emphasis on building routines that facilitate learning, the LEAP program incorporates a practical life skills curriculum, into students’ individualized education programs (IEP), including such strategies as applied behavior analysis (ABA), TEACCH (Treatment and Education of Autistic and Related Communications Handicapped Children), discrete trial, incidental learning, errorless teaching, augmentative and alternative communication, picture exchange communication systems, sensory diets, and vocational training along with other established approaches. Instead of adhering to a fixed curriculum, teachers collect data on the IEP objectives and use data to make modifications to the teaching plans, as necessary. The main goal is to develop a treatment that fits the individual variables in each student’s life. With enough data, programs can be altered to provide the most efficient use of resources and time and be altered as the students’ needs change during treatment. Lessons taught at school are also practiced at home with the help of family members. This not only reinforces the lessons but allows students to see how the information applies to their everyday lives. This realization helps them to learn social skills that will help them throughout life. LEAP RELATING TO AUTISM The underlying focus of the LEAP program is achieved through an inclusive classroom-based program that runs 3 hours daily, year round. Developmentally appropriate 213
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practice and applied behavioral analysis techniques are employed, and typically developing peers are used in modeling and encouraging appropriate behavior. A major goal is to increase students’ independence and help them develop functional communication, daily living, and vocational skills. The methods used to attain this goal are oneon-one and group instruction carried out in a highly structured environment. The structure is necessary to maximize efforts and to provide cohesiveness not only to the subject matter but also to the teaching methods used. Consistency and repetition are the keys to providing an environment that is conducive to learning. Social interaction is fostered throughout the day in the classroom and on the playground. Nondisabled peers play a major role here by teaching students social skills and getting them to interact with others. Nondisabled students receive special training so they can help achieve a constant open environment for the students to practice initiating and responding to social conditions. It is this constant reinforcement that allows the child with autism to learn to fully participate in social interaction. LEARNING OPPORTUNITIES IN SCHOOL For younger children, LEAP’s primary teaching method involves the discrete trial approach. With some children, errorless prompting is used. Students spend much of their day engaged in drills, learning things like colors, numbers, animals, and parts of the body. The rest of the day includes music and art therapy, and theme group activities, with therapist-led group learning about a specific topic like cooking. Since children with autism prefer to work by themselves, the goal of a group activity is to teach them social skills so they are able to sit next to peers at a group table and wait for their turn to participate. LEARNING OPPORTUNITIES OUTSIDE THE CLASSROOM As the children progress, teachers use the same approach in natural environments. Thus, older students practice tasks in the real world. They go to stores and look for a certain item, go to the cash register, pay for it, and then get back into the van to return to school, thus learning how to accomplish tasks necessary for everyday life. See also augmentative and alternative communication; discrete trial training; vocational rehabilitation. REFERENCES Hoyson, M., Jamieson, B., & Strain, P. (1984). Individualized group instruction of normally developing and autistic-like children: The LEAP curriculum model. Journal of the Division for Early Childhood, 8, 157–172. Kennedy Krieger Institute. (2005). LEAP program (Lifeskills and Education for Students with Autism and other Pervasive Behavioral Challenges). Retrieved August 22, 2006, from http:// www.kennedykrieger.org/kki_school.jsp?pid=1422&bl=1.
FURTHER INFORMATION Dawson, G., & Osterling, J. (1997). Early intervention in autism. In M. J. Guralnick (Ed.), The effectiveness of early intervention (pp. 307–326). Baltimore: Brookes Publishing Co. Educating Children with Autism. (2001). Front matter executive summary (pp. 168–169). Retrieved August 22, 2006, from http://newton.nap.edu/books/0309072697/html/168.html. Erba, H. W. (2000). Early intervention programs for children with autism: Conceptual frameworks for implementation. American Journal of Orthopsychiatry, 70(1), 82–94.
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LINDAMOOD-BELL The PDA Center at the University of Colorado at Denver (1998). (The Professional Development in Autism Center). Retrieved August 22, 2006, from http://depts.washington.edu/ pdacent/sites/ucd.html. Psychosocial Paediatrics Committee. Canadian Paediatric Society (CPS). (2004). Early intervention for children with autism. Pediatrics & Child Health, 9(4), 267–270. Retrieved August 22, 2006, from http://www.cps.ca/english/statements/PP/pp04-02.htm#Committee#Committee. Schopler, E., Reichler, R. J., DeVellis, R. F., & Daly, K. (1988). The Childhood Autism Rating Scale (CARS). Los Angeles: Western Psychological Services. Shaw, G. (2005). Autism in the classroom: What works. Neurology Now, 1(3), 32–33. Retrieved August 22, 2006), from http://www.neurologynow.com. Strain, P. S. (1987). Comprehensive evaluation of young autistic children. Topics in Early Children Special Education, 7, 97–110. Strain, P. S., & Hoyson, M. (2000). On the need for longitudinal, intensive social skill intervention: LEAP follow-up outcomes for children with autism as a case-in-point. Topics in Early Children Special Education, 20, 116–122.
JOUNG MIN KIM LIFE SKILLS SUPPORT Life skills support refers to an educational or vocational support program or setting targeting the psychosocial and interpersonal skills that assist individuals in the process of making informed decisions, communicating effectively, and developing coping and self-management skills. Life skills supports often provide instruction in personal hygiene, functional academics, culinary skills, and social competence in order to help individuals lead a healthy and productive life. JEANNE HOLVERSTOTT
LIMBIC SYSTEM The limbic system is a set of brain structures (the list varies with the source consulted), which includes the amygdala, hippocampus, hypothalamus, and several other nearby structures. The limbic system is mainly involved in emotions and formation of memories. It also influences the autonomic nervous system (involuntary body functions) and endocrine system (hormone secretion). BRUCE BASSITY
LINDAMOOD-BELL The Lindamood-Bell learning process was cofounded by Pat Lindamood and Nanci Bell. It is headquartered in San Luis Obispo, California and has 39 learning centers in the United States and one in London. Lindamood-Bell conducts diagnostic evaluations on students, designs lessons, schedules instruction, and sets up learning environments (Lindamood & Bell, 2005). Based on the students’ needs, they use an interactive, balanced approach entailing Socratic questioning and clinical teaching, and provide follow-up services to continue processing and development in everyday life. Lindamood-Bell School Services provides workshops for teachers, onsite consulting, and professional support in the areas of sensory cognitive programs, professional development, learning environments, leadership, and accountability. 215
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REFERENCE Lindamood, P., & Bell, N. (2005). Lindamood-Bell learning process. Online Resource: http:// www.lblp.com.
JOUNG MIN KIM LOCAL EDUCATION AGENCY A Local Education Agency (LEA) ensures that school personnel are trained and qualified to provide educational services for students with special needs at the local public school district level. KATHERINE E. COOK LOCOMOTION Locomotion refers to the ability to walk or move in a forward motion. KELLY M. PRESTIA LOSS AND LEARNING THEORY. See Good Grief! LOW/POOR REGISTRATION Low registration is a neurological characteristic of individuals who have a high sensory threshold, or tolerance, that must be met for typical stimuli to produce a response. Individuals with low registration often appear lethargic and inattentive and may require intense sensory stimulation to gain their attention or engage them in activities. See also sensory stimuli. KELLY M. PRESTIA
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M MAGNETIC RESONANCE IMAGING (MRI) Magnetic resonance imaging (MRI) is a technology used to create detailed images of the insides of humans or other organisms. MRI use is extremely expensive but is generally a noninvasive procedure with few known side effects. An MRI can take 2-D images or 3-D models, and the outcome is of high quality. In the field of autism, MRI has been used extensively over the last decade to make images of the brain. This includes pictures of the brain to chart seizure damage, brain structure and anatomy, brain volume, amount of gray and white matter, and other structures. FURTHER INFORMATION Bremner, J. D. (2005). Brain imaging handbook. New York: W. W. Norton & Co. Radiological Society of North America, Inc. (2006). MR Imaging (MRI Body. Retrieved June 5, 2006, from http://www.radiologyinfo.org/content/mr_of_the_body.htm.
PAUL G. LACAVA MAINSTREAMING Mainstreaming is a term that is used when considering placement of a student with an autism spectrum disorder (ASD) in a general education classroom (Zionts, 1997). It has been used interchangeably with the term inclusion; however, mainstreaming and inclusion are two different approaches to serving students with disabilities. Usually, when an IEP team considers mainstreaming, it is assumed that the student is able to show progress with the nondisabled peers in the regular educational setting. These students have the appropriate skills to progress using the same curriculum, usually with some adaptations or modifications. The term mainstreaming was used in the late 1970s and early 1980s after the Individuals with Disabilities Education Act (IDEA) was passed into law. During this time, mainstreaming was implemented by including students with disabilities in nonacademic portions of the curriculum, such as music, art, and physical education, while continuing academic instruction in self-contained classrooms, limiting the time with nondisabled peers. Educators and parents did not approve of the act of mainstreaming, creating the Regular Education Initiative (REI). REI had three major goals, which included sharing
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responsibility of students with special needs, including students with special needs into regular education classrooms full time, and increasing the achievement of students with mild disabilities (Fuchs & Fuchs, 1994). This debate between special educators and general education leaders resulted in a new term, inclusion. Inclusion became the model for serving students with disabilities in school settings. Now, mainstreaming is considered as placing a student with a disability in a classroom with the expectation that the student is able to keep pace or make progress in the general education classroom. Mainstreaming has definite benefits. The student with an ASD would benefit from being around appropriate social and behavioral role models. It is important to evaluate if being mainstreamed in the regular education classroom is the least restrictive environment (LRE) for the student. If a student with ASD is mainstreamed in the regular education classroom, it is important for the regular classroom teacher and special education teacher to consult regularly on how to help create the most successful environment possible. Mainstreaming does not have to be the entire school day; the IEP can be selective and choose times that the student is able to participate and show progress the same as other nondisabled peers. This may be during different academic times of the day, physical education, music, or any other time of the day. REFERENCES Fuchs, D., & Fuchs, L. S. (1994). Inclusive school movement and the radicalization of special education reform. Exceptional Children, 60(4), 294–305. Zionts, Paul. (Ed.). (1997). Inclusion strategies for students with learning and behavioral problems: Perspectives, experiences, and best practices. Austin, TX: Pro-Ed.
MELISSA L. TRAUTMAN
MAINTENANCE Maintenance, also known as generalization across time, refers to an individual’s ability to use a skill at an acceptable rate for a specific amount of time following the termination of part or all of a systematic instructional procedure or intervention. For a skill to be maintained, it should be durable and resistant to extinction. For example, if a student learned to write numbers 1–10, staff should intermittently perform maintenance checks to assess the skill and to ensure that the student can perform the skill at the same proficiency. FURTHER INFORMATION Alberto, P. A., & Troutman, A. C. (2006). Applied behavior analysis for teachers (7th ed). Upper Saddle River, NJ: Prentice Hall. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall. Heflin, J. L., & Alaimo, D. F. (2007). Students with autism spectrum disorders: Effective instructional practices. Upper Saddle River, NJ: Prentice Hall. Scheuermann, B., & Webber, J. (2002). Autism: Teaching does make a difference. Belmont, CA: Wadsworth/Thomson Learning. Westling, D. L., & Fox, L. (2004). Teaching students with severe disabilities (3rd ed.). Upper Saddle River, NJ: Prentice Hall.
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MALADAPTIVE BEHAVIOR Maladaptive behavior refers to undesirable, deviant, or negative behaviors displayed over a period of time to meet a want or need in place of a more socially appropriate behavior. KATHERINE E. COOK MAND A mand is a request. The term mand was created and introduced by B. F. Skinner in his 1957 book, Verbal Behavior. In it Skinner defines a mand as something that names its reinforcer and is brought about by deprivation or aversion. For example, when a child wants juice he says ‘‘juice’’ and is given juice. ‘‘Juice’’ is a mand. As long as manding is reinforced, the response is giving the child what he asks for; manding tends to increase over time, therefore increasing language. As may be anticipated, manding is typically the first step in the development of functional language. REFERENCE Skinner, B. F. 1957. Verbal behavior. New York: Appleton-Century-Crofts.
KATIE BASSITY MASSED PRACTICE Also referred to as mass trials in some forms of discrete trial programming, massed practice is repeated trials of one task or skill. In massed practice, a student is required to demonstrate a particular skill for many consecutive repetitions. Massed practice is generally one of the first steps in learning a new task or skill within more structured forms of applied behavior analysis, such as discrete trial training instruction. KATIE BASSITY MASTURBATION Like their neurotypical counterparts, most people with autism spectrum disorders (ASD) develop an interest in intimacy, relationships, and sexuality (Lawson, 2005; Shore, 2003). One natural means for satisfying some of this interest could be masturbation or exploration of our own bodies for sexual gratification (Realmuto & Ruble, 1999). Masturbation is reported in several studies to be a common occurrence among children, adolescents, and adults with ASDs (Koller, 2000; Haracopos & Pederson, 1999; Realmuto & Ruble, 1999; and Reichle & Palmer, 1997). While there is little written material specifically addressing the subject of sexuality issues and ASDs, most experts agree that teaching necessary information in a proactive and factual manner is the most responsible route for parents, caregivers, or professionals to assume (Shore & Rastelli, 2006). Blum and Blum (1981) cited in Hinsburger (1995) suggest the following learning objectives when teaching the topic of masturbation: ¥ Masturbation is NORMAL and HEALTHY. Myths about the effects of masturbation can be very destructive (Grandma’s story about going blind is nonsense!). Feelings of shame, guilt, immorality, and fear can interfere with masturbation in such a way that leads to obsessions, anxiety, and inappropriate public behaviors. ¥ There are appropriate times and places to engage in masturbation. Discussion about private versus public behavior becomes very important at this point because public masturbation
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MEAN LENGTH OF UTTERANCE is illegal in most places and one of the most frequently noted inappropriate behaviors in the autistic population (Helleman and Deboutte, 2002). Since nonverbal communication, perspective taking, and sensory deficits are all well-documented challenges for individuals with ASD, comprehensive educational programming should include very clear and open discussion of ways to help compensate for these challenges that lead to successful social or sexual experiences. ¥ Learning what kind of stimulation leads to pleasure goes back to the sensual nature of sexual stimulation. Because many individuals with autism have sensory processing deficits, programming should include awareness of the physiological nature of sensory issues and compensatory strategies for whatever tactile sensitivities may exist.
With some effort, parents and professionals can find books and curricula that will help them initiate and support appropriate education regarding sexuality issues for individuals with ASD, just like they would for any other person. It is not unreasonable to suggest that the person providing the instruction should allow themselves the opportunity to examine their own social bias and values prior to taking on such a responsibility in order to avoid the potential for inadvertent subjective or judgmental messages during instruction. There is no denying that sexuality along with drug or alcohol abuse and many other culturally defined issues can make for very awkward conversations that promote myths and misinformation. As with any other population, a genuine understanding of the issues that influence social success can provide caregivers and professionals with some of the best tools for supporting healthy development. REFERENCES Haracopos, D., & Pederson, L. (1999). The Danish report. Kettering: Autism Independent UK. Helleman, H., & Deboutte, D. (2002). Autism spectrum disorders and sexuality. Paper presented at the Melbourne World Autism Congress. Hinsburger, D. (1995). Hand made love: A guide for teaching male masturbation through understanding and video. New Market: Diverse City Press. Koller, R. (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18(2), 125– 135. Lawson, W. (2005). Sex, sexuality and the autism spectrum. London: Jessica Kingsley Publishers. Realmuto, G. M., & Ruble, L. A. (1999). Sexual behaviors in autism: Problems of definition and management. Journal of Autism and Other Developmental Disabilities, 29(2), 121–127. Reichle, N. C., & Palmer, A. (1997). Sexual behavior in adults with autism. Journal of Autism and Other Developmental Disabilities, 27(2) 113–125. Shore, S. (2003). Beyond the wall: Personal perspectives with autism and Asperger syndrome. Shawnee Mission, KS: Autism Asperger Publishing Company. Shore, S., & Rastelli, L. (2006). Understanding autism for dummies. Indianapolis, IN: Wiley Publishing, Inc.
FURTHER INFORMATION Henault, I. (2006). Asperger’s syndrome and sexuality. London: Jessica Kingsley Publishers. Kempton, W. (1993). Socialization and sexuality: A comprehensive guide. Santa Barbara, CA: James Stanfield Company. Diverse City Press at www.diverse-city.com.
SHERRY MOYER MEAN LENGTH OF UTTERANCE Mean Length of Utterance (MLU) is one tool used to calculate the linguistic activity or proficiency of young children’s spoken language. To calculate the mean length 220
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of utterance of a child, you add up the total number of words spoken by the child and divided by the number of morphemes within the spoken words. A morpheme is defined as the smallest unit of meaning within a word. For example, ‘‘I see plane’’ would have a MLU of (3). KATHERINE E. COOK MEDIATION Mediation is a process that helps resolve disputes between two parties. According to the Individuals with Disabilities Education Act (2004), all school districts are required to make special education mediation available to parents of children with disabilities. Special education mediation is designed to be a cooperative discussion where both parties can reach an agreement. A mediator is used to facilitate this process; once an agreement is met, the written agreement is binding. REFERENCE Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. et seq.
FURTHER INFORMATION Vocational and Education Services for Individuals with Disabilities. (n.d.). Special education mediation. Retrieved December 13, 2006, from www.vesid.nysed.gov/specialed/mediation.htm.
TERRI COOPER SWANSON MENTAL AGE Mental age (MA) is the level of intellectual development as measured by intelligence tests. MA is expressed as the age at which that level of development is typically attained. For example, when a child is described as having a MA of 12, he is able to solve the same test problems as average 12-year-old children. THERESA L. EARLES-VOLLRATH MENTAL HEALTH COUNSELOR A mental health counselor is a licensed counselor that helps individuals, couples, and families discuss their problems for the purpose of resolving interpersonal and intrapersonal conflicts. Mental health counselors often counsel parents and siblings of autistic children and typically work closely with other professionals such as psychologists and psychiatrists. STEVE CHAMBERLAIN MENTAL RETARDATION Mental retardation is a broad term used to describe someone who has limits in their cognitive or thinking skills as well as difficulties with adaptive skills such as communication, self-help, social skills, and academics. This disability originates before the age of 18 (American Association on Mental Retardation, 2002). In order to receive a diagnosis of mental retardation, an individual must score significantly below average on an intelligence test, as well as exhibit limited functioning in the previously listed 221
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areas. The average score on an intelligence test (IQ test) is 100. People scoring below a 70 are said to have mental retardation. The Individuals with Disabilities Education Act of 2004 (IDEA) defines mental retardation as ‘‘significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance’’ (Federal Register, 1999). Individuals with mental retardation develop and learn but at a much slower rate than typically developing peers. The degree to which mental retardation affects a person ranges from profound, severe, or moderate, to mild. Mental retardation is the most common developmental disorder. The Centers for Disease Control and Prevention (CDC) found in 1993 that 1.5 million children and adults in the United States had mental retardation (Mental Retardation, 2005). The highest rate of mental retardation was found in West Virginia, while the lowest rate was found in Alaska. The causes of mental retardation are extremely varied. The condition can be caused by disease, injury, or neurological abnormality. Some of the most common causes are Down syndrome, fetal alcohol syndrome (FAS), and fragile X syndrome. Diseases such as cytomegalovirus and measles may also cause mental illness. In addition, lead exposure and lack of prenatal care may lead to mental retardation. Additional causes may involve asphyxia, head injury, stroke, metabolic conditions (phenylketonuria), or hydrocephalus. Most diseases or events that cause mental retardation cannot be prevented. However, some, such as fetal alcohol syndrome, can be prevented if no alcohol is ingested while a mother is pregnant. Additionally, prompt treatment for jaundice can prevent a specific type of brain damage that can occur if the bilirubin is allowed to reach too high of a level. Metabolic conditions may be able to be identified after birth through blood tests. Once identified, these babies are treated with medications and/or special diets. Several organizations exist to support families and individuals with mental retardation. Some of the bigger ones are The Arc of the United States, The American Association on Mental Retardation, and the Division on Developmental Disabilities. See also adaptive behavior. REFERENCES American Association on Mental Retardation. (2002). Mental retardation: Definition, classification, and systems of supports (10th ed.). Washington, DC: Author. Federal Register Department of Education Assistance to States for the Education of Children with Disabilities and the Early Intervention Program for Infants and Toddlers with Disabilities; Final Regulations. 34 CFR Parts 300 and 303. Vol. 64, No. 48. Friday, March 12, 1999. Mental Retardation (October 29, 2005). Developmental Disabilities. Retrieved October 30, 2006, from http://www.cdc.gov/ncbddd/dd/mr3.htm.
LYNN DUDEK MERCURY Mercury is an element that has been historically used in a number of ways including in chemical production, thermometers, dental fillings, and electronics. Mercury and its many forms can become very toxic to humans and other animals. Research has lead to the phasing out of mercury thermometers as well as increased emphasis on environmental 222
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safety. From the 1990s to the publication of this volume, increased research was conducted to explore the effects of ethyl mercury contained in the vaccine preservative thimerosal for a possible connection to an increase in the prevalence of autism. At this writing, although no conclusive evidence has been revealed that shows causality between thimerosal and increased autism rates, the controversy has not been settled. See also vaccinations (thimerosal). FURTHER INFORMATION Centers for Disease Control and Prevention. (2004). FAQs about MMR vaccine and autism. Retrieved March 30, 2005, from http://www.cdc.gov/nip/vacsafe/ concerns/autism/autism-mmr. htm. Kirby, D. (2005). Evidence of harm: Mercury in vaccines and the autism epidemic: A medical controversy. New York: St. Martin’s Press. National Broadcasting Company. (Executive Producer). (February 23, 2005). The Today Show [Television Broadcast]. New York: National Broadcasting Company.
PAUL G. LACAVA METALLOTHIONEIN Metallothioneins (MTs) are proteins that participate in the uptake, transport, and regulation of zinc in a biological system. By binding and releasing zinc, metallothioneins regulate its level within the body. Metallothionein also carries zinc ions (as signals) from one part of the cell to another. When zinc enters a cell, it can be picked up by thionein (becoming metallothionein) and carried to another part of the cell where it is released to another organelle or protein. This system is particularly important in the brain, where zinc signaling is prominent both between and within nerve cells. In a 2001 presentation to the American Psychiatric Association, Dr. William J. Walsh of the Pfeiffer Treatment Center suggested a potential link between metallothionein disorders and autism. He concluded that ‘‘Many classic symptoms of autism may be explained by a MT defect in infancy including [gastrointestinal] tract problems, heightened sensitivity to toxic metals, and abnormal behaviors. These data suggest that an inborn error of MT functioning may be a fundamental cause of autism’’ (Walsh and Tarpey, 2001). REFERENCE Walsh, W. J., & Tarpey, J. (May 2001). Disordered metal metabolism in a large autism population. Presented at the American Psychiatric Association annual meeting, New Orleans.
JEANNE HOLVERSTOTT MILIEU TEACHING Milieu teaching is a naturalistic approach to teaching language in a child’s environment (Goldstein, 2002). Many studies have shown that milieu teaching is the effective way to teach language, especially for children with autism spectrum disorders (Goldstein, 2002; Hancock & Kaiser, 2002; Koegel, Koegel, & Surratt, 1992; Koegel, O’Dell, & Dunlap, 1988). According to Paul and Sutherland (2005), milieu teaching includes the following components: (a) teaching and training occur in the child’s everyday environment rather than in a ‘‘therapy room’’; (b) activities take place as part of the daily routine rather than only at ‘‘therapy time’’; (c) preferred toys and activities are included 223
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in the environment so that participation in activities is self-reinforcing; (d) adults encourage spontaneous communication by refraining from prompting and using ‘‘expectant waiting’’ such as facial expression or eye gaze; (e) the child initiates the teaching situation by gesturing or indicating interest in a desired object or activity; (f) teachers provide prompts and cues for expanding the child’s initiation; and (g) expanded child responses are rewarded with access to a desired object or activity. Incidental teaching is one of the most common types of milieu teaching. Teachers can plan expected learning for children based on their interests or desires. For instance, if the child always wants to have a specific toy in the playroom, the teacher can place the toy in sight but out of reach in the playroom. The teacher then waits for the child to initiate his need to have the toy. The teacher may gaze at the child or use facial expressions to prompt the child’s initiation to get the toy. If the child does not initiate, the teacher may ask the child what he or she wants. If the child produces the target initiation, the teacher meets the child’s need. By carefully arranging the environment, teachers can promote child engagement with activities and communication (Ostrosky & Kaiser, 1991). Teachers and parents can use ‘‘teachable moments’’ in the daily routine as well as in planned situations. The mand model also uses natural situations based on the child’s desire. For example, when the teacher observes the child’s interest, the teacher utters a request such as ‘‘What is this?’’ or ‘‘Do you want this?’’ If the child shows the target response, the teacher gives him the preferred object and allows him to play with it for a certain time. Time delay or prompt-free approaches are also examples of milieu teaching methods (Goldstein, 2002; Paul & Sutherland, 2005). Using time delay, adults wait for a certain length of time for the child to respond appropriately. With a prompt-free approach, if the child reaches or touches the provided pictures or objects without being prompted, she gets the target object. Even though milieu teaching is generally used to teach requesting, because of the high motivation inherent in requesting desired items that presumably function as reinforcers (Goldstein, 2002), it can also be a helpful way to maintain and generalize new behaviors in the child’s natural environment. REFERENCES Goldstein, H. (2002). Communication intervention for children with autism: A review of treatment efficacy. Journal of Autism and Developmental Disorders, 32, 373–396. Hancock, T., & Kaiser, A. P. (2002). The effects of trainer-implemented enhanced milieu teaching on the social communication of children with autism. Topics in Early Childhood Special Education, 22, 39–54. Koegel, R. L., Koegel, L. K., & Surratt, A. (1992). Language intervention and disruptive behavior in preschool children with autism. Journal of Autism and Developmental Disorders, 22, 141– 153. Koegel, R. L., O’Dell, M. C., & Dunlap, G. (1988). Producing speech use in nonverbal autistic children by reinforcing attempts. Journal of Autism and Developmental Disorders, 18, 525–538. Ostrosky, M. M., & Kaiser, A. P. (1991). Preschool classroom environments that promote communication. Teaching Exceptional Children, 23, 6–10. Paul, R., & Sutherland, D. (2005). Enhancing early language in children with autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (pp. 946–976). Hoboken, NJ: John Wiley & Sons, Inc.
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MINDBLINDNESS Mindblindness refers to an inability to read or be aware of others’ minds. BaronCohen developed the term in order to describe a major characteristic of autism (1990). Understanding others’ minds is one of the key factors in social interaction because most people use nonverbal information such as gestures, facial expression, or voice tone to understand social situations. Mindblindness is a common characteristic of individuals with autism spectrum disorders. REFERENCE Baron-Cohen, S. (1990). Autism: A specific cognitive disorder of ‘‘mind-blindness.’’ International Review of Psychiatry, 2, 79–88.
HYO JUNG LEE MODIFIED CHECKLIST FOR AUTISM IN TODDLERS (M-CHAT) The M-CHAT (Robins, Fein, Barton, & Green, 2001) is an American modified version of the original UK CHAT. The M-CHAT is a 23-item parent-report checklist (yes/no responses) designed to screen children ages 16 to 30 months old for possible autism. Research identified six critical items, and children failing any three total items or any two of the six critical items are recommended to undergo further investigation. Sensitivity of the M-CHAT is reported to be good, based on children being diagnosed after age 2 years with autism who had failed the M-CHAT screen. Researchers suggest that rescreening after the initial M-CHAT with a second M-CHAT can help rule out those who have developed skills after the original screen. REFERENCE Robins, D. L., Fein, D., Barton, M. L., & Green, J. A. (2001). The Modified Checklist for Autism in Toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31, 131–144.
FIONA J. SCOTT MOOD DISORDERS Every year 44 million people are afflicted with mental illness (United States Department of Health and Human Services–Substance Abuse and Mental Health Administration [USDHH-SAMHA], 2006). Mood disorders are common mental illnesses, and according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IVTR; APA, 2000), they are divided into four categories: (a) depressive disorders, (b) bipolar disorders, (c) mood disorders due to a general medical condition, and (d) substance-induced mood disorders (APA, 2000). Depressive disorders and bipolar disorders are the most common types of mood disorders (USDHH-SAMHA, 2006). According to the APA (2000), there are three types of depressive disorders: (a) major depressive disorder, (b) dysthymic disorder, and (c) depressive disorder not otherwise specified. The four types of bipolar disorders include: (a) bipolar I disorder, (b) bipolar II disorder, (c) cyclothymic disorder, and (d) bipolar disorder not otherwise specified (APA, 2000). Mood disorders due to a general medical condition are characterized challenges with depression due to physiological difficulties due to a general medical condition. Substance-induced mood disorders are characterized by drug abuse or exposure to a toxin. 225
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Mood disorders can be treated, and individuals affected by them can lead productive lives. Types of treatment may include medication and psychotherapies. Treatment may be short- or long-term depending upon the type of mood disorder and the length of time it has occurred. For additional information on the specific diagnostic features of mood disorders, see the Diagnostic and Statistical Manual of Mental Disorders (APA, 2000). REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. United States Department of Health and Human Services–Substance Abuse and Mental Health Administration. (2006). Mood disorders. Retrieved December 1, 2006, from http://mentalhealth.samhsa.gov/publications/allpubs/ken98-0049/default.asp.
TERRI COOPER SWANSON MOOD STABILIZING MEDICATIONS Mood stabilizing medications are used to control extreme behaviors, mood swings, depression, and mania, which cause disruption in functioning. Various types of medications are used such as antidepressants, some antipsychotics, and anticonvulsants such as valproic acid (Depakote), carbamazepine (Tegretol), and lithium. See also antidepressant medications; antipsychotic medications. BRUCE BASSITY MOTIVATION ASSESSMENT SCALE The Motivation Assessment Scale (MAS; Durand & Crimmins, 1988) is an indirect assessment designed to assess the function of a challenging behavior. Family members, teachers, case managers, or others with knowledge of the challenging behavior answer the 16 questions on the MAS by assessing frequency from 0 (never) to 6 (always) and are directly correlated to one of four behavioral functions: self-stimulation, escape/ avoidance, attention, and tangible. The MAS should be used with other tools to determine the function of and a replacement behavior(s) for a challenging behavior. REFERENCE Durand, V. M., & Crimmins, D. B. (1988). Identifying the variables maintaining self-injurious behavior. Journal of Autism and Developmental Disorders, 18, 99–117.
JEANNE HOLVERSTOTT MOTOR IMITATION Motor imitation is the ability to replicate a motor movement or group of movements from a model or demonstration. KELLY M. PRESTIA MULTIDIMENSIONAL ANXIETY SCALE FOR CHILDREN (MASC) The Multidimensional Anxiety Scale for Children (MASC; Pierangelo & Giuliani, 2006) is a diagnostic tool, which assesses the key features of anxiety problems in children and adolescents, ages 8 to 19. It consists of 39 items disseminated across four 226
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basic scales: Physical Symptoms, Harm Avoidance, Social Anxiety, and Separation/ Panic. Subscales include Somatic Symptoms and Tense Symptoms, Perfectionism and Anxious Coping, and Humiliation Fears and Performance Fears. The MASC is commonly used in schools, outpatient clinics, residential treatment centers, juvenile detention centers, child protective services, and private practices. REFERENCE Pierangelo, R., & Giuliani, G. (2006). The special educator’s comprehensive guide to 301 diagnostic tests. New York: Wiley.
AMY BIXLER COFFIN MULTIDISCIPLINARY EVALUATION (MDE) A multidisciplinary evaluation (MDE) is a comprehensive evaluation conducted by a multidisciplinary team (MDT) consisting of professionals from various disciplines such as special education, speech-language pathology, occupational therapy, physical therapy, and school health services. The purpose of the MDE is to determine eligibility for special education, establish current levels of performance, and assist in developing appropriate programming. See also speech-language pathologist. THERESA L. EARLES-VOLLRATH MULTIDISCIPLINARY TEAM When providing services to students with disabilities, professionals from different disciplines (i.e., occupational therapy, speech therapy, special education, general education) that generally work independently of each other work together during assessment, program planning, and implementation. KATHERINE E. COOK MUSIC THERAPY The American Music Therapy Association (AMTA) defines music therapy as ‘‘the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program’’ (2006). Music therapy may take place in a variety of settings including homes, community programs, or schools, and is considered a related service under the Individuals with Disabilities Education Act (2004). The nonthreatening environment afforded by the music therapy session often enables individuals and often results in improved outcomes. Academic skills can be addressed through structured music drills for math facts, letter identification, and more. Reading comprehension can be addressed over time with musically assisted attention development and the expansion necessary for making inferences in reading, writing, and day-to-day living. When designing interventions, music therapists consult with other professionals to determine and construct a treatment plan that will serve the individual’s needs in a proactive manner. For example, is a school setting they will be part of the child’s Individualized Education Program (IEP) team, and that team will determine and construct the treatment plan together. 227
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When working with individuals with autism, a music therapist may do some of the following activities. Communication When working to increase and build communication, a music therapist may use familiar songs or repetitive melodies with original lyrics. Utilizing intermittent breaks in the lyrics while keeping the rhythm steady provides opportunities for the individual to predict and often produce a response. The music therapist extends these activities to expand vocabulary for use in receptive and expressive language, as well as developing language use in a social context.
Socialization When working to develop, increase, and/or improve socialization, a music therapist may utilize rhythm to provide structure and melody to organize information by setting Social Stories or social scripts to music. The music may be original or familiar depending on the individual’s needs. The music therapist may construct peer groups to practice socialization in a true social context while using instrument play. Structured and unstructured instrument play allows the music therapist to embed opportunities for turn taking, verbal and nonverbal communication of needs and wants, attention, awareness of others and self, as well as an opportunity to be successful.
Behaviors When working to address specific behaviors, the music therapist will begin by working with the individual’s team to identify the function of the behavior. In the event that the function is communication, necessary vocabulary and concepts can be taught through the use of repetitive melodies and lyrics paired with visuals if necessary and rehearsal and reinforcement across contexts. An example of this might be a student’s inability to understand the concept of ‘‘wait’’ or ‘‘don’t interrupt.’’ The music therapist can compose a simple and repetitive song paired with actions that aid the individual to learn the basic behaviors of ‘‘waiting’’ that function across settings such as keeping hands in lap and/or lips together with the voice turned off. In this example we also introduce the concept of time over space. Music exists naturally over time and space and serves as an excellent medium for experiencing and teaching such an abstract concept as ‘‘wait.’’ Other behaviors are the function of situational problem solving. Musically adapted Social Stories and social scripts are one way to address preparing individuals for transitions, changes in schedule, asking for help, and asking a peer to play. Playing instruments that require two or more pieces to produce a sound are also used to rehearse problem solving skills.
Sensory Needs Sensory needs can also be addressed through music therapy. Music therapists may provide a variety of interventions suited to the individual that may range from psychoacoustical therapies (special training required) to scheduled music listening times.
The music therapist is held to national Standards of Practice (AMTA, 2006) for assessment, treatment planning, documentation, evaluation, and termination. No standardized music therapy assessment currently exists for individuals with autism. Models of treatment and documentation vary based on the professional training of the music therapist, the setting the music therapist is working in, and the individual needs of the client. REFERENCES American Music Therapy Association (2006). Autism spectrum disorders: Music therapy research and evidence based practice support. Retrieved November 20, 2006, from www.musictherapy. org/factsheets/MT%20Autism%202006.pdf. Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004).
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FURTHER INFORMATION American Music Therapy Association: www.musictherapy.org. Kaplan, R. S., & Steele, A. L. (2005). An analysis of music therapy program goals and outcomes for clients with diagnoses on the autism spectrum. Journal of Music Therapy, 42(1), 2–19. Kielinen, M., Linna, S. L., & Moilanen, I. (2002). Some aspects of treatment and habilitation of children and adolescents with autistic disorder in Northern-Finland. International Journal of Circumpolar Health, 61(Suppl. 2), 69–79. Thaut, M. H. (2005). Rhythm, music, and the brain: Scientific foundations and clinical applications. New York: Taylor and Francis Group, LLC. Whipple, J. (2004). Music in intervention for children and adolescents with autism: A metaanalysis. Journal of Music Therapy, 41(2), 90–106.
MELANIE D. HARMS MUTUALLY ACCEPTABLE WRITTEN AGREEMENT A mutually acceptable written agreement is a binding document that is the result of mediation. FURTHER INFORMATION Vocational and Education Services for Individuals with Disabilities. (n.d.). Special education mediation. Retrieved December 13, 2006, from www.vesid.nysed.gov/specialed/mediation.htm.
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N NATURAL LANGUAGE PARADIGM The natural language paradigm (NLP) is an intervention procedure that approximates the manner in which typically developing children acquire language (Koegel, O’Dell, & Koegel, 1987). NLP is built upon arranging the environment to increase a child’s opportunities to use language. Children are encouraged to initiate the interaction as stimulus items are chosen by the child, varied every few trials, age appropriate, and found in the child’s natural environment. Both teacher and child play with the stimulus item (the item is functional within the interaction). A loose-shaping contingency is used to reinforce attempts to respond verbally, except for self-stimulation (Koegel, Koegel, & Parks, 1995). NLP represented a shift from pull-out procedures using drill procedures and imitation to more naturalistic procedures for language intervention. Pivotal response training has emerged from NLP (Koegel & Koegel, 2006). REFERENCES Koegel, R. L., & Koegel, L. K. (2006). Pivotal response treatments for autism. Baltimore: Brookes Publishing Co. Koegel, R. L., Koegel, L. K., & Parks, D. R. (1995). ‘‘Teach the individual’’ model of generalization: Autonomy through self-management. In R. L. Koegel & L. K. Koegel (Eds.), Teaching children with autism: Strategies for initiating positive interactions and improving learning opportunities (pp. 67–77). Baltimore: Brookes Publishing Co. Koegel, R. L., O’Dell, M. C., & Koegel, L. K. (1987). A natural language paradigm for teaching nonverbal autistic children. Journal of Autism and Developmental Disorders, 17, 187–199.
JEANNE HOLVERSTOTT NEUROFEEDBACK Neurofeedback, also referred to as EEG biofeedback, is a form of biofeedback. It uses the principles of biofeedback to create a learning opportunity through operant conditioning. Like traditional biofeedback, neurofeedback increases awareness of a bodily state and increases control over that state. In the case of neurofeedback, the individual learns to impact his or her states of arousal through operant conditioning through feedback of brainwave activity. Operant conditioning waits for a behavior to occur and then consequates the behavior. The purpose of the training is to increase awareness and allow the brain to
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practice shifting states of arousal. Arousal is the state of awareness from internally focused to our own thoughts and feelings to external focus within the environment. When we are very internally focused we emit brain waves that are large in amplitude and slow in frequency. The lower brain waves are called delta waves. During sleep the majority of the brain is emitting delta waves. Delta waves range from 0.5 to 3 cycles per second (cps). At a resting or daydreaming state, the majority of the brain is emitting brainwaves with the frequency range of 8 to 11 cps, and these are called alpha waves. The sensorimotor rhythm (SMR) is a state of calm that is often associated with external awareness yet quietly alert. And finally, the so-called thinker waves or beta are characterized as focused, analytic, often externally oriented and intense thinking, and are measured at 16 to 20 cps. The function states of arousal are to tune ourselves into internal and external demands within our environment. A healthy nervous system will effortlessly shift from internal states such as sleep (0.05–3 cps) to meet task demands of a learning task within a classroom; for example, they could range from 8 to 20 cps. An example of alpha wave activity is when you have been driving for some time and look up and realize you have been daydreaming and do not remember passing through some traffic. The theory is that some neurological-based disorders are impacted arousal states that are predominant or do not meet the internal or external environmental task demand. Through this ‘‘brain workout’’ the individual learns to better attend to the internal and external environment. The benefits of the training are largely individual and can impact several neurological symptoms. The hypothesized reason that there are such varied results is the nature of the brain functioning. The materials necessary for neurofeedback are an EEG and a specially designed computer program. A typical session includes the following steps. First, the individual is clinically assessed and a training program is established. A trained, certified clinical professional will design an individual training program depending on their neurological profile. The individual will have electrodes placed on their scalp with a sticky paste. Then the individual will watch a video game. This game is actually a visual and auditory feedback system of their own brainwave activity. When they bring their brain waves within a set cycle per second, then they are reinforced and the game progresses. In many of the games, when they produce brainwave activity outside the set parameters the game stops or does not progress. Through this game the individual’s brain undergoes a ‘‘mental workout.’’ This requirement to shift their focus from either more internal to external or vice versa is the exercise. This, in turn, produces a brain that adapts to the environmental task demands. FURTHER INFORMATION Bitsika, V., & Sharpley, C. (2000). Development and testing of the effects of supports on the well-being of parents of children with autism—II: Specific stress management techniques. Journal of Applied Health Behaviour, 2(1), 8–15. EEG Spectrum International. (2001). Retrieved June 1, 2005, from http://www. eegspectrum.com. Evans, J. R., & Abarbanel, A. (1999). Introduction to quantitative EEG and neurofeedback. San Diego: Academic Press. Jarusiewicz, B. (2002). Efficacy of neurofeedback for children in the autistic spectrum: A pilot study. Journal of Neurotherapy, 6(4), 39–49. Robbins, J. (2000). A symphony in the brain. New York: Atlantic Monthly Press.
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NEUROTOXIC Schwarts, M., & Androasik, F. (2003). Biofeedback: A practitioner’s guide. New York: Guilford Press. Sichel, A. G., Fehmel, L. G., & Goldstein, D. M. (1995). Positive outcome with neurofeedback treatment in a case of mild autism. Journal of Neurotherapy, 1(1), 60–64.
STEPHANIE NICKELSON NEUROIMAGING Neuroimaging is the use of MRI, PET, SPECT, and CAT scans to evaluate and monitor development and/or alterations in brain anatomy and function. This is an expanding and experimental area with much current research into developmental and degenerative disorders. More is being learned about structural differences in the brains of persons with what had previously been considered ‘‘behavioral’’ disorders. BRUCE BASSITY NEUROLOGIST A neurologist is a medical doctor who treats patients with neurological disorders, which are disorders that affect the central, peripheral, and autonomic nervous systems. Such disorders include epilepsy, cerebral palsy, migraine headaches, tic disorders, sleep disorders, multiple sclerosis, traumatic brain injuries, and spinal cord disorders. STEVE CHAMBERLAIN NEUROLOGY Neurology is the branch of medicine that deals with disorders of the nervous system. Neurologists are specialized physicians trained to diagnose and treat these disorders, and are mostly trained to work with adults. Pediatric neurology is a subspecialty of pediatric medicine. BRUCE BASSITY NEUROMOTOR Neuromotor is a term relating to the connection between nerves and muscles, generally an impulse transmitted from the nervous system to the musculoskeletal system. BRUCE BASSITY NEUROPSYCHOLOGY A combination of neurology and psychology, this discipline seeks to understand the relationship between the structure and function of the brain on psychological processes and behavior. As in neurology, these specialists may work in research, clinical diagnosis and treatment, or teaching. BRUCE BASSITY NEUROTOXIC Neurotoxic is a term referring to toxicity or harm against the nervous system. Many chemicals that were previously thought harmless, such as lead (in paint, plumbing), are now known to cause damage to the brain and nervous system. BRUCE BASSITY 233
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NEUROTRANSMITTER A neurotransmitter is a substance (such as acetylcholine, dopamine, serotonin, norepinephrine) that is released from the axon terminal (outgoing end) of a neuron or nerve cell, travels across the gap to the receptor end of anther nerve cell to either inhibit or excite that next cell. Dysfunction of brain neurotransmitters, which are sometimes referred to as chemical messengers, can be related to various psychiatric and cognitive disorders. BRUCE BASSITY NEWSLETTER Newsletters discuss general information related to autism spectrum disorders in a user-friendly format. Newsletters provide information relevant to a specific geographic region. For a list of newsletters, please see Appendix A. JEANNE HOLVERSTOTT NO CHILD LEFT BEHIND ACT 2001 (PL 107-110) President George W. Bush proposed a framework based on bipartisan education reform that became the No Child Left Behind (NCLB) Act of 2001. The NCLB Act aims to increase accountability; give more choices to parents and students; offer greater flexibility for states, school districts, and schools; make reading a priority; and offer other program changes that best suit state and school needs. REFERENCE U.S. Department of Education. (n.d.). No Child Left Behind. Retrieved November 30, 2006, from www.ed.gov/nclb/landing.jhtml.
MELANIE D. HARMS NO-NO PROMPT PROCEDURES A no-no prompt procedure is a form of error correction. The procedure is as follows. A directive or discriminative stimulus (Sd) is given. If the student responds incorrectly, the instructor says, ‘‘No.’’ The same directive is given a second time. If the student responds incorrectly, the instructor again simply responds, ‘‘No.’’ The third trial is then prompted, meaning immediately after giving the directive the instructor prompts the student so that he responds correctly. This form of error correction is used after an initial teaching period during which other forms of prompting may and should be used. Once a designated level of acquisition is achieved, the instructor may then shift to a no-no-prompt schedule of prompting whenever the task is presented in the future. KATIE BASSITY NONVERBAL LEARNING DISABILITY A nonverbal learning disability (NLD) is a neurological syndrome that includes both specific strengths and precise deficits. Strengths include: (a) early speech and vocabulary development; (b) exceptional rote memory skills; (c) attention to detail; (d) early reading skills; (e) excellent spelling skills; (f) strong auditory retention; and (g) articulate verbal skills. Deficits include: (a) motor delays such as poor coordination, 234
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balance, and handwriting skills; (b) visual-spatial-organizational weaknesses; (c) social difficulties such as nonverbal communication, transitions, social judgments; and (d) sensory issues such as disorders or dysfunctions in any of the sensory modes. Specific causes of nonverbal learning disorders are not known. A genetic or familial link has yet to be identified as has been in language-based learning disorders (i.e., dyslexia). Brain scans of individuals with NLD have revealed mild abnormalities of the right cerebral hemisphere. Developmental histories revealed several children suffering from NLD have had one of the following: (a) moderate to severe head injury, (b) repeated radiation treatments on or near their heads for an extended amount of time, (c) congenital absence of a corpus callosum, (d) hydrocephalus, or (e) brain tissue removed from the right hemisphere (Thompson, 1996). At this time, nonverbal learning disability has not been recognized by the American Psychiatric Association. Diagnosis is made using a neurological profile that has been defined in the literature. Johnson and Myklebust (1967) were the first to describe a definition of nonverbal learning disorder in which children have specific difficulties with social awareness. Rourke (1995) further defined nonverbal learning disorders as having primary, secondary, and tertiary deficits that result in socioemotional or adaptational deficits. Children with Asperger syndrome and nonverbal learning disability may present similarly in several areas of strength and deficit. The children with nonverbal learning disorders appear to not exhibit the restricted interests or special skills that would meet the criteria for a diagnosis of Asperger syndrome. REFERENCES Johnson, D., & Myklebust, H. (1967). Learning disabilities: Educational principles and practices. New York: Grune & Stratton. Rourke, B. (Ed.). (1995). Syndrome of nonverbal learning disabilities: Neurodevelopmental manifestations. New York: The Guilford Press. Thompson, S. (1996). Nonverbal learning disorders. NLDline. Retrieved October 30, 2006, from http://www.nldline.com/.
LYNN DUDEK NORMALIZATION The concept of normalization was first introduced by Nirjie in the 1960s and popularized by Wolfensberger in the 1970s. Normalization involves the acceptance of individuals with disabilities, offering them the same living and learning experiences as those available to individuals without disabilities. According to Wolfensberger (1972), the concept of normalization does not refer to making individuals ‘‘normal,’’ or to making them behave in a certain manner, or forcing them to conform to societal norms. Rather, normalization aims to ensure that individuals with disabilities have the opportunities to live a normal rhythm of life. Inclusion is based on the concept of normalization. REFERENCES Nirje, B. (1969). The normalization principle and its human management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 179–195). Washington, DC: President’s Committee on Mental Retardation. Wolfensberger, W. (1972). Normalization: The principle of normalization in human services. Toronto: National Institute on Mental Retardation.
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FURTHER INFORMATION Westling, D. L., & Fox, L. (2004). Teaching students with severe disabilities (3rd ed.). Upper Saddle River, NJ: Prentice Hall.
THERESA L. EARLES-VOLLRATH NORM-REFERENCED ASSESSMENT A norm-referenced assessment compares an individual student’s performance to persons of the same age and/or grade level (norming group). This assessment measures how much one knows in comparison to others. The comparison can occur at the classroom, local, or national level. FURTHER INFORMATION Salvia, J., & Ysseldyke, J. E. (2007). Assessment: In special and inclusive education (10th ed.). Boston: Houghton Mifflin Company. Taylor, R. L. (2006). Assessment of exceptional students: Educational and psychological procedures (7th ed.). Needham Heights, MA: Allyn and Bacon.
THERESA L. EARLES-VOLLRATH NOTICE OF RECOMMENDED EDUCATIONAL PLACEMENT (NOREP) Notice of Recommended Educational Placement is a procedural notice provided to all Individualized Education Program (IEP) members that identifies the multiple placements considered and the chosen educational placement. The notice of recommended educational placement must provide a written statement why placement was chosen and why alternative educational placements were not appropriate for the individual student. KATHERINE E. COOK NUTRITIONAL SUPPLEMENTS Nutritional supplements are intended to supply nutrients that are missing or not consumed in sufficient quantity in a person’s diet. Varied amounts of research have been done on supplements for persons with autism spectrum disorders. The largest, most promising body of evidence comes from studies focusing on B vitamins, especially B6, given in combination with magnesium. For other nutrients, the data are not robust. Appropriate dosing presents a key problem with regard to the empirical study of supplements. Nutritional supplementation should be undertaken only with the assistance and supervision of a physician with a strong background in autism, nutritional analysis, and nutritional treatments. Nutritional supplements as treatment options for autism include, but are not limited to, vitamin A (retinol) and beta carotene, vitamins B1 (thiamin), B2 (riboflavin), B3 (niacin), B5 (pantothentic acid), B6 (pyridoxine), and folic acid, vitamin C (ascorbic acid or sodium ascorbate), vitamin E (alpha tocopherol), coenzyme Q10 (antioxidant), magnesium, selenium, and zinc (minerals), and dimethylglycine (DMG). FURTHER INFORMATION Hamilton, L. M. (2000). Facing autism. Colorado Springs, CO: Waterbook Press. Marhon, S. (2002). Natural medicine guide to autism. Charlottesville, VA: Hampton Roads Publishing Co. Shaw, W. (2002). Biological treatments for autism and PDD. Lenexa, KS: Sunflower Publishing.
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O OBJECT INTEGRATION TEST An object integration test involves sets of line drawings depicting objects and people intended to be either visually integrated to make the most coherent scene or compared for similarities. Individuals with autism exhibit impairments in their ability to integrate objects, not in their ability to look for similarities. This test provides support for Frith’s (1989) central coherence hypothesis. Central coherence has been defined as the natural built-in propensity to process incoming stimuli globally and in context, pulling information together to acquire higher-level meaning. REFERENCE Frith, U. (1989). Autism: Explaining the enigma. Oxford, UK: Blackwell.
JEANNE HOLVERSTOTT OBJECTIVE An objective is a stated and desired outcome of intervention based on a derived set of educational goals and individual needs. Objectives are written in observable and measurable terms to ensure consistency among staff and to provide for precise evaluation of progress. THERESA L. EARLES-VOLLRATH OBJECT SORTING TEST An object sorting test is a test of cognitive functioning designed to assess abilities at category development. As the name implies, the test consists of sorting objects by specified categories. JEANNE HOLVERSTOTT OCCUPATIONAL THERAPIST An occupational therapist (OT) is a health professional with a bachelor’s or master’s degree from an accredited university who has passed the national occupational therapy certification exam. The word occupation in occupational therapy refers to the activities, roles, and goal-oriented behaviors of individuals from birth to old age in
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their daily lives. An OT may work in a school, hospital, skilled nursing facility, community mental health center, or other related organizations in which individuals require the assistance of a skilled professional to remediate, adapt, or prevent a disability from interfering in their daily lives. An OT may complete a task analysis of the activity or situation in which the child with an autism spectrum disorder is having difficulty to determine a step-by-step intervention to improve a skill, such as using a fork. For example, an OT may use clay for finger and hand strengthening, finger painting on a window for eye-hand coordination, and tossing and catching weighted beanbags for body awareness, all of which are necessary components of using a fork appropriately. KELLY M. PRESTIA
OCCUPATIONAL THERAPY Occupational therapy (OT) is a health profession that provides purposeful activities and interventions to individuals of all ages who need to regain the skills necessary to participate fully in their life roles. For individuals with autism spectrum disorders (ASD), those life roles may include going to school, playing, socializing with peers, being an active member of their family and community, engaging in sports and other extra-curricular activities, and taking care of their own personal needs. OT services for a child with ASD may take place in a hospital or private practice, in the child’s own home, in the community, or in the school. In a hospital, community, or in-home setting, occupational therapy services may not be provided without a written order from the child’s physician. In a school setting, occupational therapy is provided as a related service to other special education services, and may not be provided as the only service for the child. Occupational therapists have a background in neurology, child development, psychology, and sensory processing. OT services can be provided in two ways: (a) as a direct service, or (b) as a consultation service. When providing direct service, the OT works directly with the child with ASD to remediate, improve, or maintain a specific skill. Prior to working with the child, the OT analyzes the skill to be worked on, as well as the student’s strengths and needs, to develop a step-by-step program for that particular skill development. For example, for a student who is unable to button his own shirt, the OT must first determine why he is unable to perform this skill. It may be due to poor strength, hand-eye coordination, or vision. The OT may use formal, standardized testing, and/or informal screenings and observations to determine the cause of the child’s difficulty. An OT assessment may include an evaluation of a child’s fine and gross motor skills, daily-living skills, sensory processing, or visual perception. Based upon the analysis, interventions are individually tailored to address the skill deficit. Consultation OT service is appropriate when the child is able to maintain learned skills and apply them to everyday situations. The purpose of consultation is to monitor the child’s performance on a regular basis to determine if changes (e.g., in daily routine, the environment) need to be made to continue his success or improve his overall independence. Consultation involves observation, planning, and contact with the child, his family, and any staff that may work with the child on a regular basis to determine if adjustments in his program must be made. For example, a child with ASD might receive OT consultation services to monitor his computer and 238
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keyboarding skills in the classroom as an alternative to handwriting his work. The OT may check in weekly with the student, parents, and teacher to ensure that he is completing necessary work, is independent in using the computer, and is able to stay on task. Modifications may be necessary to address specific problems. For instance, if the student is distracted and not able to stay on task while on the computer, the OT may provide headphones and a study carrel to minimize distractions. Occupational therapy can provide valuable services and resources to students and their families to help the individual with ASD perform at his or her optimal level. By understanding the student’s strengths and needs, making necessary modifications, or directly intervening to gain or improve a skill, an OT can help the individual with ASD experience success in a variety of situations and environments. FURTHER INFORMATION Christiansen, C., & Baum, C. (1991). Occupational therapy: Overcoming human performance deficits. Thorofare, NJ: SLACK Inc.
KELLY M. PRESTIA OPERANT CONDITIONING Operant conditioning is a behavioral paradigm that states that the consequences of a behavior affect the future occurrences of that behavior. Operant conditioning relies upon a behavioral framework that includes an antecedent stimulus that precedes a behavior, a behavior, and a consequence contingent upon the behavior. The probability of a behavior occurring again is increased if it is reinforced or rewarded. The behavior is less likely to occur again if the consequence is unpleasant or aversive. When the rate of the behavior is changed due to the consequences, then the behavior is considered to be an operant (Cooper, Heron, & Heward, 1987). The principles of operant conditioning have been used to increase or decrease existing behaviors or teach new behaviors through the manipulation of consequences. REFERENCE Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall.
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TARA MIHOK
OPTIONS (SON-RISE PROGRAM) The Son-Rise Program, developed by Barry Neil Kaufman and Samahria Lyle Kaufman for their son Raun, is a specific and comprehensive program based on joining in a child’s behavior to discover his or her own motivation (Autism Treatment Center of America, n.d.a). Raun Kaufman was diagnosed as being severely autistic. Instead of institutionalizing their son, the Kaufmans created a treatment program that used the home environment as the place to nurture the growth of their son in a caring and respectful way. The Kaufmans believe that autism is a relational and interactive neurological disorder. When a child displays self-regulatory or so-called ‘‘stimming’’ behaviors, or ritualistic or perseverative behaviors, the Son-Rise Program intervenes in enthusiastic, play-based interventions to build rapport and connect with the child. The idea is that by participating in the child’s activity or behaviors rather than teaching through drills or repetition, eye contact and other socialization skills will increase. 239
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Although the Kaufmans have worked with many skilled and caring professionals, they believe that parents hold the key as the most powerful and committed teachers to develop a specific program to meet the unique needs of their own children. Their program involves empowering parents with tools to create the attitudinal changes needed to teach a child with autistic spectrum and other developmental disorders. The Son-Rise Program is based at the Option Institute in Sheffield, Massachusetts. The staff at the Option Institute must complete ‘‘a rigorous and comprehensive educational curriculum . . ., which includes extensive work with children of varying ages and diagnoses, classroom education, group instruction, comprehensive ideological and attitudinal training, and continual observation and feedback by experienced Son-Rise Program Teachers’’ (Autism Treatment Center of America, n.d.b). The staff at the Option Institute has worked many years with hundreds of families. Staff members come from a multitude of disciplines and experiences, and hold degrees in special education, psychology, sociology, and physical therapy, among others. The Autism Treatment Center of America at the Option Institute is the only learning and treatment center that offers professional training for the Son-Rise Program. At the Option Institute, all child facilitators and teachers are certified by the Son-Rise Program professional certification programs. The Son-Rise Program is designed to be a one-on-one, home-based program that helps in the development of socialization, communication, self-help, and other learning skills. The Son-Rise Program is based on the following principles: 1. Joining in a child’s repetitive and ritualistic behaviors supplies the key to unlocking the mystery of these behaviors and facilitates eye contact, social development, and the inclusion of others in play. 2. Utilizing a child’s own motivation advances learning and builds the foundation for education and skill acquisition. 3. Teaching through interactive play results in effective and meaningful socialization and communication. 4. Using energy, excitement, and enthusiasm engages the child and inspires a continuous love of learning and interaction. 5. Employing a nonjudgmental and optimistic attitude maximizes the child’s enjoyment, attention, and desire throughout their Son-Rise Program. 6. Placing the parent as the child’s most important and lasting resource provides a consistent and compelling focus for training, education, and inspiration. 7. Creating a safe, distraction-free work/play area facilitates the optimal environment for learning and growth. (Autism Training Center of America, n.d.c)
The Son-Rise Program can be used in conjunction with other therapies, treatments, and interventions such as diet and vitamin therapies, sensory integration, and biological interventions. REFERENCES Autism Treatment Center of America. (n.d.a). History of the Son-Rise Program? Retrieved November 13, 2006, from http://www.autismtreatmentcenter.org/contents/about_son-rise/ history_of_the_son-rise_program.php. Autism Treatment Center of America. (n.d.b). Frequently Asked Questions About the Son-Rise Program. Retrieved November 13, 2006, from http://www.autismtreatmentcenter.org/contents/ about_son-rise/faq.php.
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OVERSELECTIVITY/OVERFOCUSED ATTENTION Autism Treatment Center of America. (n.d.c). ‘‘What Is the Son-Rise Program?’’ Retrieved November 13, 2006, from www.autismtreatmentcenter.org/contents/about_son-rise/what_is_the_ son-rise_program.php.
FURTHER INFORMATION The Option Institute: www.option.org.
ANN PILEWSKIE ORAL-MOTOR SKILLS Oral-motor skills refer to any activity that requires the use and coordination of the muscles in and around the mouth and tongue. Examples of oral-motor skills are chewing, licking, and puckering the lips. KELLY M. PRESTIA ORAL SENSITIVITY Oral sensitivity is an observable response to an overactive gustatory (taste) system. Observable responses of oral sensitivity are the dislike of or refusal to brush one’s teeth or eat certain textures or temperatures of foods. KELLY M. PRESTIA OVERCORRECTION Overcorrection is a form of punishment that requires the individual to engage in a repetitive behavior intended to decrease the reoccurrence of an undesired behavior. There are two types of overcorrection techniques: restitution and positive practice. Restitution requires the individual to not only correct what he did wrong, but to do something else in addition. A commonly used example is an individual who creates a mess while throwing a tantrum. In restitution, that individual is required to clean up the mess he made, as well as any mess that already existed in the room before the tantrum. Positive practice involves the student repeatedly engaging in the alternate, positive behavior—the desired behavior in the given situation. For example, for the student who runs to get in line first, having him repeatedly walk to the line and walk back to his seat is positive practice. In addition, negative practice is sometimes associated with overcorrection, although in fact it is the opposite of overcorrection. Negative practice requires the student to engage in the negative behavior numerous times, under the teacher’s or adult’s control. There are ethical and practical concerns regarding the use of negative practice. KATIE BASSITY OVERSELECTIVITY/OVERFOCUSED ATTENTION Overselectivity/overfocused attention, also referred to as tunnel vision, describes when an individual intently focuses upon an object, person, or activity, disregarding all other stimuli or environmental cues. Overselectivity may result from an individual’s difficulty screening out or discriminating irrelevant stimuli to determine what is most important. For example, an individual with an autism spectrum disorder may fixate on the blinking light on a computer across the room. KELLY M. PRESTIA 241
Autism Spectrum Disorders
Autism Spectrum Disorders A HANDBOOK FOR PARENTS AND PROFESSIONALS Volume 2: P–Z Edited by
Brenda Smith Myles, Terri Cooper Swanson, Jeanne Holverstott, and Megan Moore Duncan
Library of Congress Cataloging-in-Publication Data Autism spectrum disorders : a handbook for parents and professionals / edited by Brenda Smith Myles, Terri Cooper Swanson, Jeanne Holverstott, and Megan Moore Duncan p. cm. Includes bibliographical references and index. ISBN-13: 978–0–313–33632–4 (set : alk. paper) ISBN-13: 978–0–313–34632–3 (v. 1 : alk. paper) ISBN-13: 978–0–313–34634–7 (v. 2 : alk. paper) 1. Autism in children—Handbooks, manuals, etc. [DNLM: 1. Autistic Disorder—Handbooks. 2. Child Development Disorders, Pervasive—Handbooks. WM 34 A939 2007] I. Myles, Brenda Smith. II. Swanson, Terri Cooper. III. Holverstott, Jeanne. IV. Duncan, Megan Moore. RJ506.A9A92377 2007 618.920 85882—dc22 2007030685 British Library Cataloguing in Publication Data is available. Copyright Ó 2007 by Brenda Smith Myles, Terri Cooper Swanson, Jeanne Holverstott, and Megan Moore Duncan All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 2007030685 ISBN-13: 978–0–313–33632–4 (set) 978–0–313–34632–3 (vol. 1) 978–0–313–34634–7 (vol. 2) First published in 2007 Praeger Publishers, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.praeger.com Printed in the United States of America
The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48–1984). 10 9
8 7 6 5
4 3 2 1
Contents
List of Entries
vii
Guide to Related Topics
xv
The Handbook
1
Appendix A: Newsletters
425
Appendix B: Journals
429
Appendix C: Organizations
437
Appendix D: Personal Perspectives
451
Index
471
About the Editors, Advisory Board, and Contributors
503
P PATTERNING (DOMAN-DELACATO TREATMENT) The Doman-Delacato patterning treatment is an intervention involving exercises aimed at forming or correcting neurological organization that has been damaged or never developed. Created by Doman and Delacato (The Institutes for the Achievement of Human Potential [IAHP], n.d.) in the 1960s, and carried out by the IAHP, this intervention is based on the belief that the development of a child mirrors that of human evolution (crawling, creeping, crude walking, and mature walking). IAHP believes that most disabilities are false labels, each representing only different symptoms of brain damage. Therefore all children with disabilities, from those in persistent vegetative states to those with mild learning disabilities, are referred to as braininjured children (diagnoses then consist of where the brain injury is and to what extent). This therapy is thought to aid all children, regardless of their brain injury, with the goal that children ‘‘achieve intellectual, physical and social excellence’’ (IAHP Goals). The first step is to determine the stage of development where injury took place or normal development ceased. A child is then taken through the steps or movements that a typically developing child would go through in that stage. The aim is to train the brain to go through the typical developmental process, believing that this will then lead to a return to normal development. IAHP states that once injury occurs, development at higher levels cannot occur; each level must be mastered before a child can move on to the next level. If a child is able, he or she performs the exercises alone. If the child is not able to perform the exercises, three adults cause the body to move through the exercises in a fluid manner. Patterning is an intensive therapy, used in conjunction with intensive programs covering reading, math, social skills, fitness, health, and so on. Although several studies were carried out in the late 1960s–1970s, there was no evidence that patterning held any benefit above that of normal care. Despite these findings, as well as the rejection by science of this child development model and the ability to change development and structure of the brain through repetitive movements, this intervention continues to be practiced and claimed as a cure. Many organizations have issued statements of concern about patterning, including the American
PDD-NOS
Academy of Pediatrics (AAP), American Academy of Neurology, and the United Cerebral Palsy Association. In its statement the AAP says, Treatment programs that offer patterning remain unfounded . . . In most cases, improvement observed in patients undergoing this method of treatment can be accounted for based on growth and development, the intensive practice of certain isolated skills, or the nonspecific effects of intensive stimulation . . . On the basis of past and current analyses, studies, and reports, the AAP concludes that patterning treatment continues to offer no special merit, that the claims of its advocates remain unproved, and that the demands and expectations placed on families are so great that in some cases their financial resources may be depleted substantially and parental and sibling relationships could be stressed. (1999)
REFERENCES American Academy of Pediatrics. (1999). The treatment of neurologically impaired children using patterning. Pediatrics, 104(5), 1149–1151. The Institutes for the Achievement of Human Potential. (n.d.). Retrieved June 28, 2006, from www.iahp.org.
FURTHER INFORMATION Novella, S. (1996). Psychomotor patterning. The Connecticut Skeptic, 1(4), 6. Retrieved June 28, 2005, from http://www.theness.com/articles/patterning-cs0104.html.
KATIE BASSITY PDD-NOS. See Pervasive Developmental Disorder–Not Otherwise Specified PEDANTIC SPEECH Pedantic speech is often characterized by expressive language that is overly formal, excessive in technical details, has an adult quality with sophisticated grammar, and is often precise in intonation. See also Asperger’s disorder. KATHERINE E. COOK PEER REVIEWED Peer reviewed (or refereed) refers to a process of subjecting work or ideas to experts in the field for review and critique. This process is designed to ensure that authors adhere to the standards of their field. JEANNE HOLVERSTOTT PEPTIDE Peptides aid in digestion. Digestive peptides assist the body in the breakdown of gluten, casein, and protein. Many individuals with autism have lower levels of amino acids in their body, which results in the buildup of opioid peptides that may mimic the effects of morphine. When there is a buildup of opioid peptides, one may observe that the individual may appear drunk or may have a more difficult time with behavioral self-control. See also casein-free; gluten-free. TERRI COOPER SWANSON 244
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PERCENTILE Percentile is a value on a ranking scale from 1 (low) to 99 (high) and a median of 50 that specifies the percent of the distribution that falls equal to or below the norm. A percentile rank illustrates the percentage of a norm group obtaining the same score or scores lower than the test-taker’s score. A percentile score is often confused with percentages. It does not refer to the number of questions marked correctly. The 85th percentile, for example, indicates the score below which 85 percent of the scores fall in a particular distribution of scores. RASCHELLE THEOHARRIS PERSEVERATION Perseveration, manifested in speech, play, or other motoric actions, is characteristic of individuals with autism. Perseverative speech is the repetition of the same words or phrases, either spontaneously spoken or echoed (echolalia), which may or may not be functional in its purpose. Perseverative play is the repetition of the same motor or other behavioral activities used in play, such as the lining up of animals over and over, the exact same placement of an object in a container over and over, or repeating the script from a cartoon or movie included in any dramatic play. See also echolalia: immediate, delayed, mitigated. FURTHER INFORMATION Quill, K. A. (2000). Do-watch-listen-say: Social and communication intervention for children with autism. Baltimore: Brookes Publishing Co.
ANN PILEWSKIE PERSEVERATIVE SCRIPTING Perseverative scripting is a term used to describe the habit of repeatedly retelling an entire story line from a movie, television show, video game, etc. A common behavior among individuals with Asperger syndrome, this retelling can be very exact and detailed, complete with dialogue, speech inflections, and accents. In children, it might involve the repeated acting out of the story line, possibly with toys. See also echolalia: immediate, delayed, mitigated. FURTHER INFORMATION Osborne, L. (June 18, 2000). The little professor syndrome. The New York Times Magazine. Retrieved September 3, 2006, from www.nytimes.com/library/magazine/home/20000618magasperger.html.
LISA BARRETT MANN PERSONAL PERSPECTIVES Personal perspectives are an individual’s narration about their own experiences. For more on personal perspectives related to autism spectrum disorders, see Appendix D. TERRI COOPER SWANSON PERSON FIRST LANGUAGE Person first language puts the person before his or her disability or supports (i.e., child with autism, not autistic child) in an effort to separate the person from the 245
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condition and retain his or her dignity. Some individuals on the autism spectrum dislike person first language, preferring autistic person to person with autism, because the diagnosis is critical to their self-concept. JEANNE HOLVERSTOTT
PERVASIVE DEVELOPMENTAL DISORDER–NOT OTHERWISE SPECIFIED Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS) is one of five disorders classified as pervasive developmental disorders. The other disorders include autistic disorder, Asperger’s disorder, Rett’s disorder, and childhood disintegrative disorder. An individual with a PDD-NOS diagnosis does not meet the diagnostic criteria for pervasive developmental disorders, yet clearly shows unusual development in the areas of communication, social interaction, and interests/attention. PDD-NOS is a neurological disorder, and symptoms can range from mild to severe. Individuals with a PDD-NOS diagnosis have more intact social skills than individuals diagnosed with other pervasive developmental disorders. Sometimes this diagnosis is given to very young children with limited communication skills who also show characteristics of autism. As the child’s communication skills increase, other symptoms of autism may become apparent (Chakrabarti & Fombonne, 2001). Some infants with PDD-NOS tend to avoid eye contact and demonstrate little interest in human voice. They do not usually put up their arms to be picked up in the way that typical children do. They may seem indifferent to affection and seldom show facial responsiveness. As a result, parents often think the child is deaf. In children with fewer delays, lack of social responsiveness may not be obvious until well into the second or third year of life (Tsai, 1998). Children with PDD-NOS may continue to show lack of eye contact, but may enjoy physical contact. They do not develop typical attachment behavior, possibly indicating a failure to bond. Generally, they do not follow the parents around the house, do not show normal separation or stranger anxiety, may approach a stranger almost as readily as they do their parents, and may show a lack of interest in being with or playing with other children. They may even actively avoid other children (Tsai, 1998). These children may develop a greater awareness or attachment to parents and other familiar adults. However, social difficulties continue with group games and forming relationships; albeit, some children with less-severe PDD-NOS may become involved in other children’s games. As they grow older they may become affectionate and friendly with their parents or siblings. The social relationships may still be difficult to understand (Tsai, 1998). Chakrabarti and Fombonne (2001) state that no two individuals diagnosed with PDD-NOS are exactly alike. However, many individuals with PDD-NOS have some characteristics in common including: deficits in social behavior; uneven skill development (strengths in some areas and significant delays in others); poorly developed speech and language comprehension and skills; difficulty with changes in environment; deficits in nonverbal communication; uncommon responses to taste, sight, sound, smell, and touch; repetitive or ritualistic behaviors (i.e., opening and closing doors repeatedly or switching a light on and off); and unusual likes and dislikes. 246
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Current estimates are that 3–4 per 1,000 individuals may have PDD-NOS, often occurring with some degree of cognitive impairment. Individuals with PDD-NOS are found in all races, ethnicities, and social status (Chakrabarti & Fombonne, 2001). REFERENCES Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285(24), 3093. Tsai, L. Y. (1998). Pervasive developmental disorders. A briefing paper written for the publication of the National Dissemination Center for Children with Disabilities.
VIRGINIA L. COOK
PERVASIVE DEVELOPMENTAL DISORDER–NOT OTHERWISE SPECIFIED DIAGNOSTIC CRITERIA (DIAGNOSTIC CRITERIA FOR 299.80, INCLUDING ATYPICAL AUTISM) The essential features of PDD-NOS are: severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; stereotyped behaviors, interests, and activities; and the criteria for autistic disorder are not met because of late age onset, and atypical and/or subthreshold symptomatology are present. This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypical personality disorder, or avoidant personality disorder. For example, this category includes atypical autism—presentations that do not meet the criteria for autistic disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these. FURTHER INFORMATION American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
JEANNE HOLVERSTOTT
PERVASIVE DEVELOPMENTAL DISORDERS (PDD) A pervasive developmental disorder (PDD) is a general term for a group of specific disorders characterized by pervasive (affecting multiple environments and domains) and significant impairments in the development of social interaction, imaginative activity, and verbal and nonverbal communication skills, as well as a limited number of interests and activities that tend to be repetitive (Tsai, 1998). The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000), identifies the following pervasive developmental disorders: autistic disorder, Rett’s disorder (also known as Rett syndrome), childhood disintegrative disorder (CDD), Asperger’s disorder, and pervasive developmental disorder–not otherwise specified (PDD-NOS). PDD is often misused as a reference to PDD-NOS. PDD-NOS refers to individuals demonstrating levels of impairment that do not meet the criteria for disorders within the PDD spectrum. 247
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REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Tsai, L. Y. (1998). Pervasive developmental disorders. A briefing paper written for the National Dissemination Center for Children with Disabilities.
VIRGINIA L. COOK PERVASIVE DEVELOPMENTAL DISORDER SCREENING TEST-II (PDDST-II) The Pervasive Developmental Disorder Screening Test-II (PDDST-II; Siegel, 2004) is a questionnaire to be completed by parents for children between the ages of 18 months and 3 years. The questionnaire contains symptoms from the three diagnostic categories of communication, repetitive movements, and social interaction. REFERENCE Siegel, B. (2004). Pervasive Developmental Disorder Screening Test II. San Antonio, TX: Harcourt Assessment.
BROOKE YOUNG PESTICIDES Pesticides are substances (often chemical or biological in nature) used to control or kill various insects, plants, animals, fungi, or bacteria that can bother and harm humans. Over the past decade the role of pesticides has been questioned as a possible causative agent for autism. Some researchers claim that pesticides such as maneb can cause neurological damage. However, the research on pesticides and autism remains very limited and increased scientific studies are needed. FURTHER INFORMATION Barlow, B. K., Lee, D. W., Cory-Slechta, D. A., & Opanashuk, L. A. (2005). Modulation of antioxidant defense systems by the environmental pesticide maneb in dopaminergic cells. Neurotoxicology, 26, 63–75.
PAUL G. LACAVA PHARMACOLOGY Pharmacology is the systematic investigation of how chemicals interact with living organisms. When chemicals have medicinal effects, they are considered pharmaceuticals. At this time, there are no pharmaceuticals to cure or suppress autism, however there are pharmaceuticals that assist with controlling compulsion (SSRI), anxiety (SSRI), inattention (Dexadrine), aggression (towards self [SSRI], towards others [Clonidine]), sleep disturbance (Clonidine, Klonpin), and seizures (Tegretol). See also anxiety disorders; mood disorders. TERRI COOPER SWANSON PHENOTYPE According to the National Human Genome Research Project (n.d.), phenotype is the ‘‘observable traits or characteristics of an organism, for example hair color, weight, or the presence or absence of a disease.’’ In autism spectrum disorders, phenotypes could include social, cognition, language, and communication. 248
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REFERENCE National Human Genome Research Project. (n.d.). Talking glossary. Retrieved November 30, 2006, from www.genome.gov/glossary.cfm?key=phenotype.
TERRI COOPER SWANSON PHYSICAL THERAPIST A physical therapist (PT) is a medical professional with a minimum of a master’s degree in physical therapy from an accredited university, who has passed a national certification exam. A PT specializes in remediation, prevention, or slowing the regression of physical conditions that may result from physical injury, chronic disease, or other causes. The PT provides services to people of all ages, including mobility training, range of motion, strengthening, balance, coordination, and modalities. Two different professional designations exist in the physical therapy community. A physical therapist has graduated from a master’s degree program in physical therapy and has received a license to practice in the state of their choice (if required). A licensed physical therapist (PT) will evaluate and treat individuals with specific motor impairments. A physical therapist assistant (PTA) must complete the education program at an approved university and be supervised by a licensed physical therapist. A PTA may carry out interventions after the physical therapist has evaluated the patient and created the treatment plan. The PTA may neither evaluate nor make modifications in the treatment plan and must work under the supervision of a PT. Physical therapists work in a variety of settings including private practices, hospitals, nursing homes, schools and development centers, and universities. Those physical therapists that work with children who have yet to develop a certain skill are referred to as developmental therapists. Physical therapists that help individuals regain skills or strength after an injury or illness are sometimes referred to as rehabilitation therapists. Other specialties in physical therapy include pediatrics, orthopedics, sports medicine, and rehabilitation. FURTHER INFORMATION American Physical Therapy Association: www.apta.org.
LYNN DUDEK
AND
KELLY M. PRESTIA
PHYSICAL THERAPY Physical therapy (PT) is the treatment delivered by a licensed practitioner (physical therapist or physical therapist assistant) to treat the physical aspects of illnesses or injuries. Therapy may involve the use of exercises and specific activities to maintain and restore function and strength as well as condition muscles. When an individual has sustained an injury, has surgery, or has movement difficulties because of a disability, illness, or disease, their physician may recommend physical therapy. Physical therapy is an effective treatment for people of any age. A physical therapist uses many different methods of exercises and modalities to improve functioning and decrease pain. These include stretching, strength training, therapeutic exercise, play activities, aquatic therapy (water), electrical stimulation, transcutaneous electrical nerve stimulation (TENS), interferential current (IFC), iontophoresis, ultrasound, phonophoresis, hot or cold therapy, and massage. Other treatment 249
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interventions include gait training, balance activities, range of motion, joint mobilization, and wound care. FURTHER INFORMATION American Physical Therapy Association: www.apta.org.
LYNN DUDEK PICA Pica is listed in the Diagnostic and Statistical Manual of Mental Disorders (DSMIV-TR; APA, 2000; 307.52 Pica) as an eating disorder. It is not pathological in all situations, as it has a lengthy history that has been well documented among most cultures since ancient times. Therefore, it must meet four guidelines as outlined in the DSM-IV-TR: Persist for at least one month duration. Developmentally inappropriate behavior. Not associated with cultural practices. If pica persists with individuals who have a concurrent developmental disorder, treatment may need to be targeted just for the pica behavior.
By definition, pica (pronounced pike-a) is the eating of nonnutritive items, such as dried paint, candles, wax, soap, rust, burnt matchsticks, feces, needles, light bulbs, dirt, used coffee grounds, and so on. Because babies frequently mouth, taste, lick, and chew nonedible items, this behavior becomes a problem when exhibited for at least 1 month after the age of 18 months, although some say after age 3 years. Historical evidence links the practice of pica as a medicinal treatment of stomach ailments and by pregnant women who may be nutritionally deficient due to the pregnancy. It has been hypothesized that the compulsion is caused by the body’s natural instinct to supplement missing nutrients not taken in by food alone. However, pica also has been used ritualistically, even magically, to promote healing, fertility, and other curatives. It has also been used during times of famine as a way to ‘‘bulk up’’ available food, such as clay baked with bread, or cooked into potatoes. Even today, Haitian women make mud pies of clay and water, baking them in the sun and selling them as a way to ‘‘put something in the belly.’’ Pica has elements of being a compulsive behavior and therefore needs prompt attention when displayed by children or adults with developmental disorders such as autism, mental retardation, or mental health disorders such as schizophrenia. While the human body can be marvelously resilient, there are many assaults that it cannot withstand, such as the ingestion of lead-based paint, which can cause a multitude of health and behavior disorders, and substances such as animal feces that can cause serious intestinal diseases, or items that can pierce the intestinal walls or cause bowel obstructions. Another danger is that once this behavior begins, it may become a compulsion that the individual may not be able to quit. Further, in some instances, people resort to pica because they do have certain mineral deficiencies, such as iron. For these people, treatment with a change in diet to meet these nutritional requirements may be enough to change the behavior. If pica exists as part of an obsessive-compulsive disorder, multiple steps will likely be needed to change this behavior, including behavioral intervention, nutritional 250
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monitoring or instruction, and even environmental controls. When pica is first diagnosed during early childhood, chances for successful treatment are higher than when it first occurs later on. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
ANN PILEWSKIE PICTURE EXCHANGE COMMUNICATION SYSTEM (PECS) The Picture Exchange Communication System (PECS) is a functional, expressive communication system designed for children and adults who do not use speech as their primary means of communication (Frost & Bondy, 2002). PECS is a low-tech alternative or augmentative communication system. It can be implemented as a primary communication system or to enhance current speech skills. PECS can be rapidly acquired because the only prerequisite is being able to identify powerful reinforcers. Users are not required to establish and maintain eye contact, discriminate among pictures, be a certain age, or have a predetermined level of cognitive ability prior to beginning PECS. Research has shown that the use of PECS as an alternative or augmentative communication system enhances the development of speech rather than inhibiting it (see Mirenda, 2003, for review of the relationship between augmentative/ alternative systems, including PECS, and speech development.) In addition, when given an effective communication system, most people’s inappropriate behaviors greatly decrease (Charlop-Christy, Carpenter, Le, LeBlanc, & Kelley, 2002). Bondy and Frost began developing PECS in 1985, and it is based on the Pyramid Approach to Education in Autism (Bondy & Sulzer-Azaroff, 2002). The Pyramid Approach to Education encompasses the principles of broad-spectrum applied behavior analysis and stresses the importance of functional activities, powerful reinforcement systems, functional communication, and behavior management plans. PECS uses a variety of lesson formats, teaching strategies, error correction procedures, and plans for generalization of skills from the start. Prior to beginning PECS, an extensive reinforcer assessment must be conducted to determine what the student prefers. This assessment is ongoing and should result in a hierarchy of most preferred to least preferred items. The PECS protocol is comprised of six phases. Individuals begin PECS with Phase I and move forward in a linear fashion. The early phases parallel typical language development by first teaching students to communicate in a nonvocal manner, just as typical infants and toddlers do before they use speech. Very young children are able to initiate communication by doing something that gains someone’s attention (e.g., looking at an object and then the person), acting in some manner that influences the communicative partner (e.g., gesture), and then receiving some type of reinforcement (social or direct) via that person. Therefore, Phase I teaches what to do with the picture rather than trying to teach the meaning of the picture. In later phases, picture discrimination is taught, which is comparable to the first spoken words of typical students. PECS is then expanded to include the use of simple sentences, adjectives, pronouns, prepositions, verbs, and other parts of speech. Students are also taught to 251
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answer simple questions and comment via PECS. Each phase systematically builds upon skills acquired in earlier phases. PHASE I: HOW TO COMMUNICATE The goal in Phase I is to teach the student ‘‘how’’ to communicate by socially approaching a listener to initiate communication by giving a picture in exchange for a desired reinforcer. The student is provided with only one picture at a time, as picture discrimination is not required at this time. This phase involves two trainers: a communicative partner and a physical prompter. The communicative partner’s role is to entice with a desired item, wait for the student to initiate (usually a reach for the item), and deliver the reinforcer immediately once the picture is placed into the trainer’s hand. The role of the physical prompter is to wait for initiation and then physically prompt the exchange of the picture. Over time, the physical prompter fades prompts to minimize prompt dependency. Phase I is taught across settings, using various reinforcers and different trainers to increase generalization. The student has mastered Phase I when, upon seeing a desired item, he independently exchanges the picture. PHASE II: DISTANCE AND PERSISTENCE The goal in Phase II is to teach the student to generalize the use of PECS to more communicative partners in many settings while also increasing the distance traveled to both communicative partners and to the communication book. In this phase, one picture at a time is displayed on the front of a communication book; no picture discrimination is required. Two trainers will speed acquisition of this phase. The teaching strategy of shaping is the primary teaching strategy used. A physical prompter is ‘‘standing by’’ in case the student needs a gestural prompt to facilitate traveling. PHASE III: PICTURE DISCRIMINATION The goal in Phase III is to teach the student to discriminate among many pictures that are included in a communication book. Phase IIIA begins by teaching the student to discriminate between a preferred picture and a nonpreferred/contextually irrelevant picture. This is known as simple discrimination. If the preferred picture is exchanged, the outcome is immediately reinforcing. If the nonpreferred picture is exchanged, an error correction procedure is initiated to improve discrimination. The student should be able to discriminate between two pictures at least 80 percent of the time. If the student is having difficulty with picture discrimination, a variety of alternative discrimination strategies can be implemented by manipulating the size, color, dimension, or image of the icon. Phase IIIB requires the student to discriminate between two preferred pictures. This is known as conditional discrimination. The communicative partner conducts correspondence checks to be sure that the student is making the correct correspondence between the picture that is exchanged and the item that is chosen. If the student makes an incorrect correspondence, the trainer uses an error correction procedure to teach about the picture of the desired item. Discrimination among three, four, and five pictures is also taught. At the end of this phase, the student will be able to find her communication book, flip through the pages of reinforcer pictures, find a desired picture, and then travel to a communicative partner to deliver the message. 252
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PHASE IV: SENTENCE STRUCTURE The goal in Phase IV is to teach the student to make a request using a simple sentence. The sentence starter ‘‘I want’’ is introduced and paired with a picture of a reinforcer to construct a two-picture sentence on a separate sentence strip to make a request. This sequential lesson is taught using backward chaining, that is, teaching the last step in the chain first and then the second to the last step and so on. Once the student is able to independently construct a two-picture sentence, he is taught to tap the pictures as the communicative partner reads the sentence. To facilitate speech without demanding it, a pause is inserted when reading the sentence to the student, and the student is differentially reinforced for speaking. If the student does not speak, the exchange is honored and the reinforcer is delivered. At this point in the training, many preschool students begin to vocalize (Frost & Bondy, 1998; Ganz & Simpson, 2004). Attributes Once Phase IV is mastered, the teaching of attributes starts. The student’s current reinforcers are assessed to determine which attributes might be taught. For example, if the student likes markers, the trainer can develop a color lesson. Other attributes to be taught include size, shape, and quantity or specific aspects of things such as body parts, animals, and toys. By learning additional vocabulary, the student gains more opportunities to deliver a clear message. It is impossible to have a picture for every item. By teaching attributes, the student will be able to describe a desired item, such as ‘‘I want brown, square cracker,’’ to indicate the desire for a graham cracker even when that specific picture is not available. PHASE V: RESPONDING TO A REQUESTING QUESTION (WHAT DO YOU WANT?) The goal of Phase V is to teach the student to respond to the simple question, ‘‘What do you want?’’ This is the first time in the protocol that the student is taught to respond to the trainer’s communication. A time-delay prompt strategy is used to teach this lesson. It is imperative that trainers not ask questions all day, because this could undermine spontaneous requesting. PHASE VI: COMMENTING The goal in Phase VI is to teach the student to comment in response to questions such as, ‘‘What do you see?’’ or ‘‘What do you hear?’’ and eventually to make spontaneous comments about events in the environment. This function of language is often difficult for students on the autism spectrum because the student does not receive a tangible reinforcer, as when making a request such as, ‘‘I want book.’’ Instead, the reinforcer for commenting is social. Phase VI is taught using the same time-delay prompt strategy as in Phase V. The trainer asks the student a commenting question such as ‘‘What do you see?’’ and the student answers the question by constructing a sentence using the ‘‘I see’’ sentence starter and a picture of the corresponding item. Students are also taught to discriminate among many sentence starters as these will serve as the means for the listener to know if the student is making a request or a comment. 253
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RESEARCH ON PECS Bondy and Frost (1994) first reported outcome data regarding a large proportion of preschool children with autism who learned PECS and subsequently displayed speech. A preliminary controlled group study from England (Magiati & Howlin, 2003) demonstrated successful implementation of PECS in a variety of classroom settings. Singlesubject studies also have demonstrated not only acquisition of PECS, but significant improvement in speech acquisition, social orientation, and reductions in behavior management problems (Charlop-Christy et al., 2002; Ganz & Simpson, 2004; Kravits, Kamps, & Kemmerer, 2002). Research continues in an effort to ensure quality implementation as well as to improve teaching strategies. SUMMARY The Picture Exchange Communication System can be a valuable tool for both parents and educators. It is a relatively easy augmentative and alternative communication system to teach, and an effective approach to use with individuals who are not yet speaking or who speak without spontaneity. PECS is a good place to start intervention because there are virtually no prerequisite skills required for its use. Many students have gone beyond PECS to use speech as their primary modality for communication; others have transitioned to a higher-tech voice output device. It is important to help students communicate effectively with people in their surroundings. Having an effective communication system that everyone can understand is a necessary component in reaching this goal. REFERENCES Bondy, A., & Frost, L. (1994). The Picture Exchange Communication System. Focus on Autistic Behavior, 9, 1–19. Bondy, A., & Sulzer-Azaroff, B. (2002). The pyramid approach to education in autism. Newark, DE: Pyramid Educational Products. Charlop-Christy, M. H., Carpenter, M., Le, L., LeBlanc, L., & Kelley, K. (2002). Using the Picture Exchange Communication System (PECS) with children with autism: Assessment of PECS acquisition, speech, social-communicative behavior, and problem behaviors. Journal of Applied Behavior Analysis, 35, 213–231. Frost, L. A., & Bondy, A. S. (1998). The Picture Exchange Communication System. Seminars in Speech and Language, 19, 373–389. Frost, L., & Bondy, A. (2002). The Picture Exchange Communication System training manual (2nd ed.). Newark, DE: Pyramid Educational Products. Ganz, J., & Simpson, R. (2004). Effects on communicative requesting and speech development of the Picture Exchange Communication System in children with characteristics of autism. Journal of Autism and Developmental Disabilities, 34, 395–409. Kravits, T. R., Kamps, D. M., & Kemmerer, K. (2002). Brief report: Increasing communication skills for an elementary-aged student with autism using the Picture Exchange Communication System. Journal of Autism and Developmental Disorders, 32, 225–230. Magiati, I., & Howlin, P. (2003). A pilot evaluation study of the Picture Exchange Communication System (PECS) for children with autistic spectrum disorders. The International Journal of Autism, 7, 297–320. Mirenda, P. (2003). Toward functional augmentative and alternative communication for students with autism: Manual signs, graphic symbols, and voice output communication aids. Language, Speech, and Hearing Services in Schools, 34, 203–216.
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PIVOTAL RESPONSE TRAINING Children with autism spectrum disorders (ASD) display characteristics of impaired social interactions, restricted repetitive patterns of behavior, and difficulties in verbal and/or nonverbal communication (APA, 2000). Pivotal response training (PRT) is a naturalistic intervention that has been implemented to promote appropriate social interactions and communicative skills in children with ASD (Humphries, 2003). As opposed to traditional behavioral interventions, PRT places great emphasis on the child’s environment using natural prompts. In addition, the procedures of this intervention are child- and family-centered (Humphries, 2003). In the 1990s, researchers at the University of California, Santa Barbara, identified four pivotal areas of child functioning, including: (a) responding to multiple cues and stimuli, (b) improving motivation, (c) increasing self-management capacity, and (d) increasing self-initiations (Koegel & Koegel, 1995). The purpose of PRT is to provide children with ASD with adequate social and communicative skills that would lead them to function independently in natural environments. PRT is suitable for individuals with ASD across a range of ages; however, it focuses primarily on early intervention. The cognitive ability of candidates for PRT ranges from mild cognitive challenges to average intelligence (Simpson et al., 2004), and minimal receptive and expressive language is required (Simpson et al., 2004). To be successful, children have to show interest in objects and be able to demonstrate imitation skills (Humphries, 2003). Since PRT occurs in the most inclusive settings, the best implementers of PRT are those who work with the children on a regular basis, such as general and special education teachers, therapists, and other professionals. Further, family members should be part of the intervention (Simpson et al., 2004). RESPONDING TO MULTIPLE STIMULI The first pivotal area is responding to multiple cues and stimuli. Children with ASD have a habit of responding to very limited and irrelevant cues in their environments, called stimulus overselectivity (Lovaas, Schreibman, Koegel, & Rehm, 1971). One example of such stimulus overselectivity may be that a child with ASD only notices tiny telephone numbers on a small commercial sign in a background of a picture. In the light of this characteristic, two approaches to the intervention in this pivotal area are suggested. The first approach is within-stimulus prompting (Schreibman, 1975), whereby an important feature of a stimulus item is greatly exaggerated to show the relevance between the object and its components. After this differentiation has been made, the exaggerated feature is faded away gradually (Dunlap, Koegel, & Burke, 1981; Rosenblatt, Bloom, & Koegel, 1995). For example, to teach a child to distinguish pennies from quarters, the size of coins could be exaggerated. After the child has learned the differences, the original sizes of the pennies and quarters are reintroduced. The second approach is to directly teach the child to respond to multiple cues and components by arranging activities and environments (Koegel & Schreibman, 1977; Schreibman, 1988; Schreibman, Stahmer, & Pierce, 1996). There are many concurrent cues and stimuli in everyday life, and being able to respond to them is necessary for successful social interactions. Thus, teachers and parents can focus on a few stimuli at a time and arrange for these selected stimuli to stand out against other stimuli in 255
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the environment. An example would be to ask the child to sort toys into colored baskets. If the child is asked to put the toy car into the red basket while there are other baskets of different colors, the child has to respond to those colors and make a correct differentiation. Therefore, the first pivotal area focuses on teaching children with ASD to be responsive to multiple cues in an effort to teach them to generalize the skill to various settings, such as home, school, and community, and to facilitate learning. MOTIVATION The second pivotal area is improving child motivation. Improving motivation is associated with increasing responsiveness to environmental stimuli, decreasing response latency, and changing emotions (Koegel, Koegel, & Carter, 1999). Lack of motivation is one of the characteristics of children with ASD that interferes with everyday learning and social interactions. In the light of this, the second pivotal area encompasses several procedures for improving child motivation. First, the child should be allowed to choose materials, topics, and toys during interactions. When learning communicative skills, for instance, if the child is allowed to select her favorite toys as stimulus or reinforcement items, chances are that she will have a sense of engagement in learning activities. Besides increasing motivation, studies have indicated a decrease in challenging behaviors (Sigafoos, 1998). In addition, the use of natural and direct reinforcers benefits target behaviors and other functional activities (Koegel et al., 1999). The third way to improve child motivation is to intersperse previously learned tasks with newly acquired tasks (Dunlap, 1984; Dunlap & Koegel, 1980; Koegel & Koegel, 1986; Koegel & Johnson, 1989). Thus, the child maintains the level of competence and at the same time gains new skills based upon what he has learned. Thus, a strong possibility of completing tasks results in high motivation and increased responses. The other important motivational technique is to reinforce any clear and goal-directed attempts made by the child (Koegel & Johnson, 1989; Koegel & Mentis, 1985; Koegel, O’Dell, & Dunlap, 1988). That is, the child is more motivated to attend tasks if he receives encouragement when making any attempts to respond. SELF-MANAGEMENT The third pivotal area is increasing self-management capacity. Having self-management skills helps children with ASD to: (a) be more independent from their intervention providers, (b) minimize the services of practitioners, and (c) reduce the supervision of the implementers. Using this approach, the intervention providers teach the child daily-living tasks and activities within the child’s natural environments and encourage the child to be actively involved in the intervention. Several general procedures are suggested to the use of self-management intervention (Koegel, Koegel, & Surratt, 1992). First, the intervention provider and the child identify a target behavior they are going to work on. For example, it could be a socially valid behavior that needs to be taught or an inappropriate behavior that needs to be reduced. The second step is to identify reinforcers. In order to improve self-management, it is better to use self-recruit reinforcement instead of external rewards. The third step is to select a self-monitoring device. Fourth, the intervention provider can teach the child how to monitor the occurrence or absence of the target behavior using the 256
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selected self-monitoring device. The final step is to see whether the child can generalize the self-management procedures to real-life situations. An example of incorporating these procedures is using self-management strategies to modulate the feelings. The intervention provider can start by assisting the child in identifying the behavior the child demonstrates when feeling angry. Worksheets or visual reminders, such as feeling thermometers, could be used as self-monitoring device. Then the child is taught how to use the monitoring device independently. For reinforcements the child can earn extra time doing his favorite activity to calm down. The goal of these intervention procedures is to enable children with ASD to internalize the self-monitoring device and foster behavioral management responsibility and use self-administered rewards. SELF-INITIATION The fourth pivotal area focuses on increasing self-initiations. A lack of spontaneous language expression is a major characteristic of children with ASD. Koegel and her colleagues (1988) found that children with ASD could learn to generalize the skill of initiating simple questions. Several self-initiations include why-questions; assistanceseeking questions and information-seeking questions are also important (Houghton, Bronicki, & Guess, 1987; Koegel et al., 1999; Shukla, Surratt, Horner, & Albin, 1995). To increase self-initiation, the intervention provider can start by having the child engage in his preferred activity and then create a teaching situation where these selfinitiating questions occur. At first, the child is prompted and reinforced to ask questions. Gradually, the prompts are faded after the child is able to generalize these skills across settings. Teaching children with ASD how to initiate questions not only increases their language expressions but also improves their social communicative competence. There are no documented risks of implementing PRT interventions (Simpson et al., 2004), and since most materials come from the child’s natural environments, it is not costly. Further, PRT incorporates teaching sessions into the child’s daily activities and, therefore, reduces the need for intensive intervention hours. However, the intervention provider should be careful about arranging teaching and learning environments, especially when introducing multiple components and stimuli into the intervention process. Thus, the instruction should be clear and uninterrupted. Some areas that children with ASD have difficulties with are not included in PRT, such as sensory processing and motor planning (Simpson et al., 2004). In general, PRT focuses on teaching children to be responsive to the many learning opportunities and social interactions that occur in natural environments, as well as increasing motivation and improving self-initiation. The ultimate goal of PRT intervention is to help children generalize the behaviors they have learned in these four pivotal areas to other natural environments. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Dunlap, G. (1984). The influence of task variation and maintenance tasks on the learning and affect of autistic children. Journal of Experimental Child Psychology, 37, 41–64. Dunlap, G., & Koegel, R. L. (1980). Motivating autistic children through stimulus variation. Journal of Applied Behavior Analysis, 13, 619–627.
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PIVOTAL RESPONSE TRAINING Dunlap, G., Koegel, R. L., & Burke, J. C. (1981). Educational implications of stimulus overselectivity in autistic children. Exceptional Education Quarterly, 20, 37–49. Houghton, J., Bronicki, G. B., & Guess, D. (1987). Opportunities to express preferences and make choices among students with severe disabilities in classroom settings. Journal of the Association for Persons with Severe Handicaps, 12, 18–27. Humphries, T. (2003). Effectiveness of pivotal response training as a behavioral intervention for young children with autism spectrum disorders. Bridges, 2(4), 1–10. Koegel, L. K., & Koegel, R. L. (1986). The effects of interspersed maintenance tasks on academic performance and motivation in a severe childhood stroke victim. Journal of Applied Behavior Analysis, 19, 425–430. Koegel, L. K., & Koegel, R. L. (1995). Motivating communication in children with autism. In E. Schopler & G. B. Mesibov (Eds.), Learning and cognition in autism (pp. 73–87). New York: Plenum. Koegel, R. L., & Johnson, J. (1989). Motivating language use in autistic children. In G. Dawson (Ed.), Autism: Nature, diagnosis, and treatment (pp. 310–325). New York: Guilford. Koegel, R. L., Koegel, L. K., & Carter, C. M. (1999). Pivotal teaching interactions for children with autism. School Psychology Review, 28(4), 576–594. Koegel, R. L., Koegel, L. K., & Surratt, A. (1992). Language intervention and disruptive behavior in children with autism. Journal of Autism and Developmental Disorders, 22, 141–152. Koegel, R. L., & Mentis, M. (1985). Motivation in childhood autism: Can they or won’t they? Journal of Child Psychology and Psychiatry, 26, 185–191. Koegel, R. L., O’Dell, M. C., & Dunlap, G. (1988). Producing speech use in nonverbal autistic children by reinforcing attempts. Journal of Autism and Developmental Disorders, 18, 525–538. Koegel, R. L., & Schreibman, L. (1977). Teaching autistic children to respond to simultaneous multiple cues. Journal of Experimental Child Psychology, 24(2), 299–311. Lovaas, O. L., Schreibman, L., Koegel, R., & Rehm, R. (1971). Selective responding by autistic children to multiple sensory input. Journal of Abnormal Psychology, 77(3), 211–222. Rosenblatt, J., Bloom, P., & Koegel, R. L. (1995). Overselective responding: Description, implications, and intervention. In R. L. Koegel & L. K. Koegel (Eds.), Teaching children with autism: Strategies for initiating positive interactions and improving learning opportunities (pp. 33–42). Baltimore: Brookes Publishing Co. Schreibman, L. (1975). Effects of within-stimulus and extrastimulus prompting on discrimination learning in autistic children. Journal of Applied Behavior Analysis, 8, 91–112. Schreibman, L. (1988). Autism. Newbury Park, CA: Sage. Schreibman, L., Stahmer, A., & Pierce, K. (1996). Alternative applications of pivotal response training: Teaching symbolic play and social interaction skills. In L. K. Koegel, R. L. Koegel, & G. Dunlap (Eds.), Positive behavioral support: Including people with difficult behavior in the community (pp. 353–371). Baltimore: Brookes Publishing Co. Shukla, S., Surratt, A. V., Horner, R. H., & Albin, R. W. (1995). Examining the relationship between self-initiations of an individual with disabilities and directive behavior of staff persons in a residential setting. Behavioral Interventions, 10, 101–110. Sigafoos, J. (1998). Choice making and personal selection strategies. In J. K. Luiselli & M. J. Cameron (Eds.), Antecedent control: Innovative approaches to behavioral support (pp. 187–221). Baltimore: Brookes Publishing Co. Simpson, R. L., Adams, L. G., Ben-Arieh, J., Byrd, S. E., Cook, K. T., de Boer-Ott, et al. (2004). Autism spectrum disorders: Interventions and treatments for children and youth. Thousand Oaks, CA: Corwin Press.
FURTHER INFORMATION Koegel, L. K., Camarata, S. M., Valdez-Menchaca, M. C., & Koegel, R. L. (1998). Setting generalization of question-asking by children with autism. American Journal on Mental Retardation, 102, 346–357. Koegel, L. K., Koegel, R. L., & Dunlap, G. (Eds.). (1996). Positive behavioral support: Including people with difficult behavior in the community. Baltimore: Brookes Publishing Co.
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PLAY-ORIENTED THERAPIES Koegel, L. K., Koegel, R. L., Hurley, C., & Frea, W. D. (1992). Improving social skills and disruptive behavior in children with autism though self-management. Journal of Applied Behavior Analysis, 25(2), 341–353.
YU-CHI CHOU PLACEBO A placebo is a pill that contains no active ingredients and is given to individuals in control groups in medication research studies. Although the placebo is made to look like an actual drug intended to help patients, it is used to help discover if the real drug provides better benefits than the placebo. The placebo effect is when a subject’s behavior improves or gets better because they think they are taking a real drug. PAUL G. LACAVA PLAY-ORIENTED THERAPIES Play-oriented therapies and interventions are among the wide range of educational and treatment options available for children with autism spectrum disorders (ASD; Boucher & Wolfberg, 2003). These approaches greatly vary with respect to theoretical orientations, as well as the goals, methods, and contexts in which they are applied. While many utilize play as a vehicle to achieve goals that are not play-specific (e.g., social skills, positive behavior, communication, and language), others are explicitly designed to support children in learning how to play. Those interventions with the goal of promoting play often target specific aspects of play behavior focusing on cognitive and/or social domains. With regard to methods, play-oriented approaches vary in degree of structure, the kinds of materials used, whether they are situated in a clinic versus natural play setting, whether they involve play with an adult versus with other children, and the age and ability ranges of peers. Theoretical orientations also run the gamut of psychodynamic, developmental, and behavioral with offshoots and combinations of each. The following gives an overview of an assortment of play-oriented therapies and interventions that are geared to children with ASD. TRADITIONAL PLAY THERAPY Traditional forms of play therapy are rooted in the psychoanalytic tradition (Freud, 1946), which prevailed in the early treatment of children with ASD, who were classified among children with a wide range of psychological problems (Axline, 1947; Klein, 1955). In general, play therapy focuses on resolving emotional and behavioral problems by establishing communication between therapist and child utilizing a variety of play activities—such as puppets, a dollhouse, sand, or clay. The idea is that play allows the child to express emotions that would otherwise be too difficult to verbalize or discuss with another person. An underlying premise of the psychoanalytic approach is that the child’s problems reflect unresolved internal conflicts that arise from past experience, all of which may be represented in play. In its original application to children with ASD, play therapy focused on drawing the child out of his or her ‘‘autisticstate’’ by working through inner struggles that were interpreted as stemming from a dysfunctional mother-child relationship (Mahler, 1952). As theories of autism shifted from psychogenic to organic explanations for the disorder, traditional psychoanalytic play therapy was no longer considered a treatment of choice. While contemporary 259
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versions of psychodynamic play therapy are now widely practiced with children who have diverse emotional issues, little research exists to determine its explicit benefits to children with ASD (Mittledorf, Hendricks, & Landreth, 2001). Nevertheless, play therapy may offer benefits to higher-functioning children who are experiencing emotional difficulties coupled with or as a by-product of ASD. ADULT-DIRECTED APPROACHES Many play-oriented interventions for children with ASD are adult-directed, based on the principles of applied behavior analysis (for a review, see Stahmer, Ingersoll, & Carter, 2003). These interventions focus on the use of systematic reinforcement to increase target play behaviors. One such approach that is commonly practiced today is discrete trial training (DTT) as associated with the work of Lovaas (1987) and colleagues (Leaf & McEachin, 1999; Maurice, Green, & Luce, 1996). In DTT, target play behaviors are broken down into a discrete set of subskills, which are taught through a series of repeated teaching trials. The environment is highly structured and controlled by the adult who relies on prompting, shaping, and reinforcement to elicit the target response. Pivotal response training (PRT) uses an adult-directed approach to promote play that capitalizes on the child’s motivation (Stahmer, 1995; Thorp, Stahmer, & Schreibman, 1995). PRT involves presenting the child with choices of preferred play activities, modeling the desired action, reinforcing the child for reasonable attempts at correct responding, and directly prompting the child to give the correct response (Koegel, Koegel, Harrower, & Carter, 1999). Also based on the principles of applied behavior analysis are in vivo modeling (Tryon & Keane, 1986) and video modeling techniques (Schwandt et al., 2002; Taylor, Levin, & Jasper, 1999) to promote play in children with ASD. In each approach, the child is systematically reinforced for imitating an adult or peer who models or performs a predictable sequence of desired play behaviors (live or on video). Self-monitoring techniques are also being used to support children with ASD in independent play (Stahmer & Schreibman, 1992) and social play with peers (Shearer, Kohler, Buchan, & McCullough, 1996). This involves training the child to monitor and deliver self-reinforcement for appropriate behavior as adult support is systematically withdrawn. CHILD-CENTERED APPROACHES Many play-oriented therapies and interventions for children with ASD involve child-centered approaches that primarily operate within a developmental framework. In general, the adult follows the child’s lead to stimulate, expand, and scaffold play along a continuum that mirrors typical development. Van Berckelaer-Onnes (2003) designed a play intervention that supports children in developing early forms of manipulative, relational, and functional play with objects. This intervention is carried out by an adult who offers and models toy play that is matched to the child’s interest and developmental level. Beyer and Gammeltoft (1999) devised a more comprehensive intervention whereby an adult supports the child in following a series of play sequences that are patterned after typical development, as well as adapted to the child’s developmental level. Each play sequence is carefully planned with respect to selecting motivating themes and materials and setting up the visual organization and structure of the play at the table where activities take place. 260
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‘‘Floor time’’ is part of developmental individual-difference relation-based intervention that supports children with ASD in reciprocal forms of play (Wieder & Greenspan, 2003). In floor time sessions, the adult follows the child’s lead utilizing gestures, words, and affect to establish joint attention and increasingly complex socialcommunicative exchanges. Sherrat (2002) developed a systematic classroom-based approach that similarly involves elements of structure, affect, and repetition to stimulate symbolic play in children with ASD. The SCERTS model (Social Communication, Emotional Regulation and Transactional Support) also incorporates a variety of child-centered practices that support children with ASD in social and symbolic forms of play (Prizant, Wetherby, Rubin, Rydell, & Laurent, 2003). PEER-MEDIATED APPROACHES Play-oriented interventions for children with ASD also include a variety of peermediated approaches. Odom and Strain (1984) were among the first to document peermediated interventions based on behavioral methods. Accordingly, typical peers are trained through modeling, prompting, and reinforcement to increase the play initiations and responses of the child with ASD. Extensions of this approach include a dual focus on providing explicit instruction to both the typical peers and the children with ASD applying ABA procedures (Haring & Lovinger, 1989; Oke & Schreibman, 1990). Similar methods have also been used for sociodramatic script training (Goldstein & Cisar, 1992). This procedure involves modeling, prompting, and reinforcing triads (consisting of one child with autism and two typically developing peers) to act out specific actions and dialogue in play scenarios that are scripted in advance for the children. A number of peer-mediated approaches for children with ASD incorporate a variety of child-centered practices that are consistent with a developmental orientation. Documentation of early efforts shares a common focus on promoting spontaneous reciprocal play between small groups of children with ASD and typical peers in natural contexts (Bednersh & Peck, 1986; Casner & Marks, 1984; Lord & Hopkins, 1986). There is also an emphasis on facilitating social, communicative, and play exchanges with minimal adult intrusion (Meyer et al., 1987). Further, attention is focused on engineering the play environment by arranging the physical space and providing intrinsically motivating activities that are highly conducive to interactive as opposed to isolated play (Beckman and Kohl, 1984). These early influences have carried over into current models of supported peer play. The Denver model (Rogers, Hall, Osaki, Reaven, & Herbison, 2000) applies childcentered practices to engage children with ASD in ‘‘sensory social exchanges’’ that revolve around toy preferences and social initiations with typical peers. This approach teaches children to initiate, imitate, and engage each other in social games and routines. The integrated play group model is a comprehensive intervention that uses guided participation to support children with ASD and typical peers in mutually engaging play experiences (Wolfberg, 1999; 2003). Routines, rituals, and visual supports are incorporated into play sessions that revolve around highly motivating social play activities. The adult facilitates by monitoring play initiations, scaffolding, and guiding social communication and play geared to each child’s unique interests, ability, and experience. Extensions of this approach include combining integrated play groups with sensory integration therapy to enhance play (Fuge and Berry, 2004). 261
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The selection of play-oriented therapies and interventions described herein includes a wide range of promising practices for children with ASD. It should be noted that this selection is by no means comprehensive, as there are undoubtedly other noteworthy play therapy and intervention models not mentioned here. It is also of interest to point out that despite apparent conceptual and methodological differences among these different approaches, there are actually some common threads that may be helpful for guiding parents and professionals in their efforts to support their children in play. First, there is a growing appreciation for the importance of including play in the lives of children with ASD. This is consistent with the recommendations of the National Research Council (2001) who ranked the teaching of play skills with peers among the six types of interventions that should have priority in the design and delivery of effective educational programs for children with ASD. Further, there is a general consensus that play interventions need to be adapted to each child’s unique interests, developmental levels, and learning style (see for example, Kok, Kong, & Bernard-Opitz, 2002; Quill, 2000). Another common focus is on identifying and responding to what is intrinsically motivating for the child. There is also a growing trend toward more naturalistic approaches, which includes providing opportunities and support for children with ASD and typical peers to play together as play partners. Finally, there is a greater openness to blending best practices to ensure that every child with ASD is given the opportunity and means to reach his or her full potential for play. REFERENCES Axline, V. (1947). Play therapy. New York: Ballantine Books. Beckman, P. J., & Kohl, F. L. (1984). The effects of social and isolate toys on the interactions and play of integrated and nonintegrated groups of preschoolers. Education and Training of the Mentally Retarded, 19, 169–175. Bednersh, F., & Peck, C. A. (1986). Assessing social environments: Effects of peer characteristics on the social behavior of children with severe handicaps. Child Study Journal, 16(4), 315– 329. Beyer, J., & Gammeltoft, L. (1999). Autism and play. London: Jessica Kingsley Publishers. Boucher, J., & Wolfberg, P. J. (Eds.). (2003). Special issue on play. Autism: The International Journal of Research and Practice, 7(4), 339–346. Casner, M. W., & Marks, S. F. (1984). Playing with autistic children. Paper presented at the annual convention of the Council for Exceptional Children, Washington, DC. Freud, A. (1946). The psychoanalytic treatment of children. London: Imago (originally published 1926). Fuge, G., & Berry, R. (2004). Pathways to play! Combining sensory integration and integrated play groups. Shawnee Mission, KS: Autism Asperger Publishing Company. Goldstein, H., & Cisar, C. L. (1992). Promoting interaction during sociodramatic play: Teaching scripts to typical preschoolers and classmates with disabilities. Journal of Applied Behavior Analysis, 25, 265–280. Haring, T. G., & Lovinger, L. (1989). Promoting social interaction through teaching generalized play initiation responses to preschool children with autism. Journal of the Association for Persons with Severe Handicaps, 14(1), 58–67. Klein, M. (1955). The psychoanalytic play technique. American Journal of Orthopsychiatry, 25, 223–237. Koegel, L. K., Koegel, R. L., Harrower, J. K., & Carter, C. M. (1999). Pivotal response intervention I: Overview of approach. Journal of the Association for Persons with Severe Handicaps, 24, 174–185.
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PLAY-ORIENTED THERAPIES Kok, A. J., Kong, T. Y., & Bernard-Opitz, V. (2002). A comparison of the effects of structured play and facilitated play approaches on preschoolers with autism: A case study. Autism: The International Journal of Research and Practice, 6, 181–196. Leaf, R., & McEachin, J. (1999). A work in progress: Behavior management strategies and a curriculum for intensive behavioral treatment of autism. New York: DRL. Lord, C., & Hopkins, M. J. (1986). The social behavior of autistic children with younger and same-age nonhandicapped peers. Journal of Autism and Developmental Disorders, 16(3), 249– 262. Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9. Mahler, M. (1952). On child psychosis in schizophrenia: Autistic and symbiotic infantile psychosis. In R. S. Eissler, A. Freud, H. Hartmann, & K. Kris (Eds.), Psychoanalytic study of the child (pp. 265–305). New York: International University Press. Maurice, C., Green, G., & Luce, S .C. (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: Pro-Ed. Meyer, L. H., Fox, A., Schermer, A., Ketelsen, D., Montan, N., Maley, K., et al. (1987). The effects of teacher intrusion on social play interactions between children with autism and their nonhandicapped peers. Journal of Autism and Developmental Disorders, 17(3), 315–332. Mittledorf, W., Hendricks, S., & Landreth, G. L. (2001). Play therapy with autistic children. In G. L. Landreth (Ed.), Innovations in play therapy (pp. 257–270). New York: Routledge. National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press. Odom, S., & Strain, P. (1984). Peer-mediated approaches to promoting children’s social interaction: A review. American Journal of Orthopsychiatry, 54(4), 544–557. Oke, N. J., & Schreibman, L. (1990). Training social initiations to a high-functioning autistic child: Assessment of collateral behavior change and generalization in a case study. Journal of Autism and Developmental Disorders, 20, 479–497. Prizant, B., Wetherby, A., Rubin, E., Rydell, P., & Laurent, A. (2003). The SCERTS Model: A family-centered, transactional approach to enhancing communication and socioemotional abilities of young children with ASD. Infants and Young Children, 16(4), 296–316. Quill, K. (2000). Do-watch-listen-say: Social and communication intervention for children with autism. Baltimore: Brookes Publishing Co. Rogers, S. J., Hall, T., Osaki, D., Reaven, J., & Herbison, J. (2000). The Denver model: A comprehensive, integrated educational approach to young children with autism and their families. In J. S. Handleman & S. L. Harris (Eds.), Preschool education programs for children with autism (2nd ed., pp. 95–133). Austin, TX: Pro-Ed. Schwandt, W. L., Pieropan, K., Glesne, H., Lundahl, A., Foley, D., & Larsson, E. V. (2002). Using video modeling to teach generalized toy play. Paper presented at the annual meeting of the Association for Behavior Analysis, Toronto, Canada. Shearer, D. D., Kohler, F. W., Buchan, K. A., & McCullough, K. M. (1996). Promoting independent interactions between preschoolers with autism and their nondisabled peers: An analysis of self-monitoring. Early Education and Development, 7, 205–220. Sherrat, D. (2002). Developing pretend play in children with autism: A case study. Autism: The International Journal of Research and Practice, 6(2), 169–179. Stahmer, A. C. (1995). Teaching symbolic play to children with autism using pivotal response training. Journal of Autism and Developmental Disorders, 25, 123–141. Stahmer, A. C., Ingersoll, B., & Carter, C. (2003). Behavioral approaches to promoting play. Autism: The International Journal of Research and Practice, 7(4), 401–413. Stahmer, A. C., & Schreibman, L. (1992). Teaching children with autism appropriate play in unsupervised environments: Using a self-management treatment package. Journal of Applied Behavior Analysis, 25, 447–459. Taylor, B. A., Levin, L., & Jasper, S. (1999). Increasing play-related statements in children with autism toward siblings: Effects of video modeling. Journal of Developmental and Physical Disabilities, 11, 253–264.
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POSITIVE BEHAVIOR SUPPORT (PBS) Thorp, D. M., Stahmer, A. C., & Schreibman, L. (1995). Teaching sociodramatic play to children with autism using pivotal response training. Journal of Autism and Developmental Disorders, 25, 265–282. Tryon, A. S., & Keane, S. P. (1986). Promoting imitative play through generalized observational learning in autistic-like children. Journal of Abnormal Child Psychology, 14, 537–549. Van Berckelaer-Onnes, I. A. (2003). Promoting early play. Autism: The International Journal of Research and Practice, 7(4), 415–423. Wieder, S., & Greenspan, S. I. (2003). Climbing the symbolic ladder in the DIR model through floor time/interactive play. Autism: The International Journal of Research and Practice, 7(4), 425–435. Wolfberg, P. J. (1999). Play and imagination in children with autism. New York: Teachers College Press, Columbia University. Wolfberg, P. J. (2003). Peer play and the autism spectrum: The art of guiding children’s socialization and imagination. Shawnee Mission, KS: Autism Asperger Publishing Company.
FURTHER INFORMATION Autism Institute on Peer Relations and Play: www.autisminstitute.com.
PAMELA WOLFBERG POSITIVE BEHAVIOR SUPPORT (PBS) Positive behavior support (PBS) is an empirically validated process for addressing problem behaviors and enhancing the lives of people with autism spectrum disorders (ASD). PBS is based on scientific principles, including applied behavioral analysis and humanistic theory. However, it is broader in that it is not a specific strategy, but a foundation for building effective interventions based on an understanding of the person’s behavior and preferred lifestyle. PBS takes a functional approach to behavior and is considered an effective practice for students with ASD by several respected groups, including the National Research Council (2001), and others (Hurth, Shaw, Izeman, Whaley, & Rogers, 1999; Iovannone, Dunlap, Huber, & Kincaid, 2003). CHARACTERISTICS Although PBS is an individualized approach, it is made up of a set of components: 1. the gathering and use of functional behavior assessment information to develop hypotheses about the purposes of behaviors; 2. the development of a multicomponent support plan based on the assessment data that includes: (a) strategies to prevent behavior from occurring, (b) strategies to teach the person a replacement skill for effectively interacting within various settings, or an appropriate communicative replacement behavior that will get the person the same outcome as did the problem behavior, and (c) strategies that change the way others respond to problem behavior so that it is no longer reinforced and to desired behaviors so that they are repeated. 3. the design of an evaluation and monitoring plan that documents the effectiveness of the interventions and provides data for making decisions about next steps.
Additional components characterize effective PBS. First, PBS works best when a collaborative team approach is used throughout the process of assessment and intervention. At a minimum, the teams should include the family members/caregivers, teachers, school staff, agency staff, and the student when appropriate. Each team 264
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member contributes his or her expertise and perspective of the person with autism spectrum disorder (ASD) and assists in developing a socially valid support plan. Second, PBS is an ongoing process that addresses both long-term and short-term goals. Although problem behavior is usually the reason why the PBS process is initiated, enhancing the quality of life for the person with ASD is a crucial goal of the support plan. Specifically, inclusion in typical environments in both the school and the community is an objective underlying the entire process. The PBS process, therefore, continues even when the problem behavior is extinguished and new appropriate behaviors consistently occur. EXAMPLES OF USE Generally, PBS consists of five steps: (a) establishing goals of intervention; (b) gathering information; (c) developing a hypothesis; (d) building a support plan; and (e) designing an evaluation, monitoring, and follow-up plan (Hieneman et al., 1999). Establishing Goals of Intervention Identifying the appropriate short- and long-term goals is typically done by a support team. Team members must have a vested interest in the person with ASD and be committed to achieving the long- and short-term goals established. The team develops goals based on the preferences, desires, abilities, and unique characteristics of the person with ASD. Goals should include reducing problem behaviors, increasing pro-social and academic skills, and improving the quality of the person’s life, including increased inclusion in school, social, and community activities (Carr et al., 2002). Person-centered planning is one method that can help the team establish goals (Kincaid, 1996). A person-centered plan provides a foundation for understanding the person’s vision for his or her life, the conditions that currently exist, and the resources that need to be accessed to help the person fulfill their vision. Outcomes of person-centered plans not only include long- and short-term goals, but also action steps for each team member to pursue throughout the process. Figures 11 and 12 present graphic examples of person-centered planning activities revolving around a vision and goals for Hannah, a 5-year-old girl with ASD who has limited verbal language. Gathering Information Functional behavior assessment information may be gathered through indirect measures such as interviews, questionnaires, and rating scales, or through direct observational measures in various environments. The assessment is used to help the team understand the circumstances surrounding the problem behavior and provide insight into possible purposes, or functions, for engaging in the behavior. Examples of environmental circumstances may include demands, transitions, removal of a preferred object or activity, or the presence of a specific peer or adult. Most behavior serves two main purposes: (a) escaping or avoiding, or (b) obtaining (e.g., attention, tangible object, etc.). The assessment also explores the responses from others that follow the problem behavior. Typical responses following problem behavior include reprimands, redirects, removal of items, time-out, etc. The information gathered is reviewed by the team to identify patterns of circumstances (where, when, what, with whom) related to the behavior. 265
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Figure 11 Sample Dream Frame from Hannah’s Person-Centered Plan
Developing a Hypothesis Hypotheses or summary statements are made based on the data gathered. At a minimum, hypothesis statements should address the context or circumstances related to the behavior, the description of the behavior, and the function served by the behavior (O’Neill et al., 1997). An example of a hypothesis statement for Hannah is as follows: When presented with a demand/request/instruction by an adult, particularly when the demand takes Hannah away from a preferred activity, Hannah screams loudly to avoid and protest the demand and to keep access to her preferred activity. The context most often related to Hannah’s behavior is being presented with demands, particularly when they take her away from activities she likes. The behavior Hannah engages in under the conditions of demands is screaming with marked intensity (loudly). Finally, the purpose that is surmised from the data is that Hannah screams during demand conditions to escape the demand and continue to keep doing her favored activity and express her feelings about the situation. In other words, Hannah is communicating in the most effective and efficient way that is currently in her repertoire. Building a Support Plan The hypothesis statement is important because it provides the foundation upon which interventions are built. Hypotheses are vital, particularly with people with ASD and deficient verbal skills, in that they provide a viewpoint of what the person 266
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Figure 12 Sample Goal Frame from Hannah’s Person-Centered Plan
is trying to say with the behavior. By modifying the events under which behavior predictably occurs, the behavior can be prevented and made irrelevant (i.e., no longer necessary). Further, by teaching an appropriate, socially valid way to obtain the same outcome with the same or better effectiveness and efficiency, the problem behavior becomes inefficient and ineffective (O’Neill et al., 1997). Examples of interventions designed to prevent problem behavior include choices, curricular modifications, transition cues, and environmental and visual supports. Interventions that teach new skills can either be strategies that provide the person a functional communicative replacement behavior (e.g., teach the person to ask for a break rather than screaming to avoid something) and/or an alternative skill (e.g., self-management, problem-solving strategies). Since the new behavior must be as efficient or better than the problem behavior in getting a desired outcome, it is important to select a behavior that is already in the person’s repertoire. For example, if the person is nonverbal and the strategy is to teach her to ask for a break, the communicative method must be easy to use and one that others can respond to efficiently. Finally, the support plan should include different ways for adults and others to respond to the person’s new replacement behaviors and old problem behaviors. The responding interventions should include a way to (a) reinforce the replacement or alternative behavior so that it is used instead of the problem behavior and (b) no longer reinforces the problem behavior. An example of a PBS plan for Hannah that includes the three minimum components of interventions (i.e., prevent, teach new skills, respond in new ways to behavior) is shown in Figure 13. Because Hannah has minimal verbal language, the team selected one word and sign, wait, both already in her repertoire, to replace her 267
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Figure 13 Positive Behavior Support Plan for Hannah
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Figure 14 Evaluation Plan for Evaluating Change to Hannah’s Problem Behavior
screaming behavior. The team also selected several prevention strategies to make the demand to transition less aversive to Hannah. Finally, the team carefully agreed upon how they were going to respond when Hannah used her new behavior and how they would respond if she engaged in her problem behavior. The additional strategies in the fourth column in Hannah’s support plan relate to some of the goals that were developed during the person-centered plan. The intent of 269
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Figure 15 Hannah’s Evaluation Plan
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the strategies is to improve Hannah’s quality of life by expanding her social relationships and community activities. Once a support plan is developed, it is important for the team to make an action plan that outlines how the interventions will be implemented. The action plan should include the steps to be taken, training to be delivered, and resources to be accessed. Monitoring and Evaluation Once the support plan is implemented, the team gathers information to evaluate the effectiveness of the supports and to make decisions for future activities (Dunlap & Hieneman, 2005). Information to be collected should include ways to evaluate behavior changes, including the person’s use of replacement or alternative behaviors. Finally, an evaluation plan should be developed to assess quality-of-life changes for the individual (e.g., having more friends, being included in more community events). Several data methods may be used to measure change in behavior, ranging from frequency recording to perceptual ratings. The important thing to consider when choosing a data method is whether the person collecting the data can use the method with minimal intrusiveness to the daily routine. A sample evaluation plan to assess whether Hannah’s screaming behavior changes is shown in Figures 14 and 15. The team chose this method because the teacher felt that something as simple as circling a number once a day would make it more likely that she would do so consistently than taking interval or frequency data. Once Hannah’s screaming behavior decreased, the team developed another evaluation method that would provide information on Hannah’s use of her new behavior as well as the occurrence of problem behavior. This form measures the teacher’s perception of the occurrence of Hannah’s problem behavior and replacement behavior. See also empiricism. REFERENCES Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W., et al. (2002). Positive behavior support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4(1), 4–16. Dunlap, G., & Hieneman, M. (2005). Positive behavior support. In G. Sugai & R. Horner (Eds.), Encyclopedia of behavior modification and cognitive behavior therapy (Vol. 3): Educational applications (pp. 1421–1428). Thousand Oaks, CA: Sage Publications. Hieneman, M., Nolan, M., Presley, J., DeTuro, L., Gayler, W., & Dunlap, G. (1999). Facilitator’s guide, positive behavioral support. Tallahassee: Florida Department of Education, Bureau of Instructional Support and Community Services. Hurth, J., Shaw, E., Izeman, S. G., Whaley, K., & Rogers, S. J. (1999). Areas of agreement about effective practices among programs serving young children with autism spectrum disorders. Infants and Young Children, 12(2), 17–26. Iovannone, R., Dunlap, G., Huber, H., & Kincaid, D. (2003). Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18(3), 150–165. Kincaid, D. (1996). Person-centered planning. In L. K. Koegel, R. L. Koegel, & G. Dunlap (Eds.), Positive behavioral support: Including people with difficult behavior in the community (pp. 439–465). Baltimore: Brookes Publishing Co. National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press.
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POSITRON EMISSION TOMOGRAPHY (PET) O’Neill, R. E., Horner, R. H., Albin, R. W., Sprague, J. R., Storey, K., & Newton, J. S. (1997). Functional assessment and program development for problem behavior: A practical handbook (2nd ed.). Pacific Grove, CA: Brooks Cole Publishing Company.
FURTHER INFORMATION Carr, E. G., Horner, R. H., Turnbull, A. P., Marquis, J., Magito-McLaughlin, D., McAtee, M. L., et al. (1999). Positive behavior support for people with developmental disabilities: A research synthesis. Washington, DC: American Association on Mental Retardation. Koegel, L. K., Koegel, R. L., & Dunlap, G. (Eds.). (1996). Positive behavioral support: Including people with difficult behavior in the community. Baltimore: Brookes Publishing Co.
ROSE IOVANNONE
POSITRON EMISSION TOMOGRAPHY (PET) Positron Emission Tomography (PET) is an imaging technique that utilizes tiny amounts of injected, radio-labeled compounds. The photon emissions are then recorded like x-rays in a CAT scan. The accumulation of these compounds in certain areas of the body may show glucose use, blood flow, oxygen, or dopamine transport depending on the type of compound injected. BRUCE BASSITY POSTSECONDARY EDUCATION Postsecondary education occurs after graduation from high school. Postsecondary education can be provided in a variety of settings: continuing education, vocational technical school training, community college education, technical college education, and traditional four-year university training. Placement in one of these settings is determined based on eligibility and meeting the policy requirements of the institution to which the individual applies. Individuals with disabilities who have applied to and been accepted by an institution may be eligible for reasonable accommodations in the educational setting. The individual will need to seek out the support services office to determine eligibility and the type of reasonable accommodations for which the student may be eligible. It is important for individuals with disabilities and their parents to understand that the accommodations and modifications received in high school will not automatically transfer to reasonable accommodations in the postsecondary setting. Therefore, the student needs to self-disclose his or her disability if the student wants assistance in the educational setting. The student will also need to be reassessed to determine what accommodations for the disability will be reasonable in the postsecondary setting. See also Americans with Disabilities Act; Section 504 of the Rehabilitation Act of 1973; self-advocacy; self-determination. BETH CLAVENNA-DEANE POSTTRAUMATIC STRESS DISORDER (PTSD) According to the Diagnostic and Statistical Manual of Mental Disorders (DSMIV-TR; APA, 2000), posttraumatic stress disorder typically develops following exposure to an extreme traumatic event that involved actual or threatened death or serious injury or a threat to the physical integrity of self or others. The reaction is extreme 272
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fear, helplessness, or horror; in children it may be expressed by disorganized or agitated behavior. SYMPTOMS The Traumatic Event Is Reexperienced The person has repeated painful memories, dreams, or flashbacks in which the event seems to be recurring. Sometimes the patient experiences bodily reactions to stimuli or situations that resemble the traumatic event. Children may engage in repetitive play in which they reflect the themes or elements of the trauma. Constant Avoidance of Stimuli Related with the Trauma and Emotional Numbing Efforts to avoid feelings, thoughts, activities, places, or people associated with the trauma are constant with an inability to recall important aspects of the event. Some patients demonstrate a detachment from others; others express lack of interest or participation in activities that they previously enjoyed and a feeling of no future. Persistent Symptoms of Increased Arousal That Were Not Present before the Trauma The person can experience persistent symptoms of anxiety, difficulty falling asleep or staying asleep, and nightmares. Some persons report difficulty concentrating and being in a constant state of vigilance. Also irritability and outburst of anger and exaggerated startle response can occur. DURATION AND COURSE OF THE SYMPTOMS This disorder causes clinically significant distress or impairment in social, occupational, and other important areas of functioning. Symptoms are classified as acute, if the length is less than 3 months, chronic, if the symptoms last 3 months or longer, and with delayed onset, if at least 6 months have passed between the traumatic event and the onset of symptoms. Posttraumatic stress disorder can occur at any age and symptoms usually begin within the first 3 months after the traumatic event. The disorder can develop in any person without predisposing conditions, especially if the stressor was particularly extreme; however, there is evidence of a heritable susceptibility to the transmission of the disorder. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
FURTHER INFORMATION Breslau, N., Chilcoat, H. D., Kessler, R. C., Peterson, E. L., & Lucia, V. C. (1999). Vulnerability to assaultive violence: Further specification of the sex difference in post-traumatic stress disorder. Psychological Medicine, 29, 813–821. Davison, J. R. T., Book, S. W., Colket, J. T., Tupler, L. A., Roth, S., David, D., et al. (1997). Assessment of a new self-rating scale for post-traumatic stress disorder. Psychological Medicine, 27, 153–160. Yule, W. (1999). Posttraumatic stress disorder. Archives of Disease in Childhood, 80, 107–109.
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POWER CARD STRATEGY Power Cards, created by Gagnon (2001), are a visual aid that uses the child’s interests in teaching appropriate social interactions, routines, behavior expectations, and the meaning of language. Using a hero or special interest serves several purposes: easy to ‘‘buy into’’ idea, capitalizes on the relationship between the hero and the child, and has generalization built into the strategy. Moreover, Power Cards are a quick, portable, low cost, and nonthreatening motivator for children. To develop a Power Card, the teacher or parent writes a short scenario in first person (from the child’s point of view) on a single sheet or booklet form, describing how the hero or special interests solves a problem. In the first paragraph of this scenario, the hero attempts a solution to the problem and experiences success. The second paragraph encourages the student to try the new behavior, which is broken down in three to five steps. The Power Card is about the size of a business card, bookmark, or trading card, includes a small picture or special interest, and summarizes the problem-solving steps. This card is carried with the student to aid in generalization. For an example of a Power Card see Figure 16. To use the Power Card in a school setting, follow these steps: identify the problem behavior and special interest, conduct a functional assessment, collect baseline data, write and introduce scenario/Power Card, take data, evaluate, modify if needed, and fade scenario/Power Card and let student help with the decision to continue use. The same steps can be taken when used at home. When used appropriately, Power Cards address sensory needs to help students realize when sensory input is needed, not to help tolerate sensory needs. To use a Power Card, a child must understand spoken language at a sentence or paragraph level, must exhibit behaviors frequently, and must have a well-developed interest. The Power Card is not a punishment, so the presenter should have a good relationship with the student. See also visual strategies.
Figure 16 Power Card Example: Barbie and Her Markers Barbie and Her Markers When Barbie finishes her school assignments, she loves to draw and color with markers. She has learned that it is important to take care of her markers so that they will last a long time. When she is getting ready to draw, Barbie puts the marker cap on the opposite end of the marker so she won’t lose it. She is always careful to draw only on the paper so her desk and body stay clean. When she is finished with a marker, she carefully puts the cap back on. Barbie wants every girl and boy to take good care of their markers. She has learned that it is important to have markers with caps so her favorite colors won’t dry up. Barbie wants you to remember these three things: Put the cap on the end of your markers before you draw. Be careful to only draw on the paper. Put the cap back on the marker when you are finished. Try your best to remember these three things so you can draw just like Barbie!
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REFERENCE Gagnon, E. (2001). Power Cards: Using special interests to motivate children and youth with Asperger syndrome and autism. Shawnee Mission, KS: Autism Asperger Publishing Company.
FURTHER INFORMATION Gagnon, E., Keeling, K., Myles, B. S., & Simpson, R. L. (2003). Using the Power Card strategy to teach sportsmanship skills to a child with autism. Focus on Autism and Other Developmental Disabilities, 18(2), 105–107.
JEANNE HOLVERSTOTT PRAGMATICS Pragmatics involves the ability to use practical components of language to enhance the communicative message. Components of pragmatics are similar to the rules of nonverbal language, including the use of eye contact between communicative partners, the distance between speaker and listener, and gestures to enhance meaning and turn-taking and topic selection within a conversation. Pragmatics is often based on one’s cultural experiences or background. KATHERINE E. COOK PRAXIS Praxis is the ability to plan, organize, and carry out a physical, motor action. See also sensory integration. KELLY M. PRESTIA PRECISION TEACHING Precision teaching, an ‘‘instructional decision-making method’’ (Cooper, Heron, & Heward, 1987) under the realm of applied behavior analysis principles, is founded in several theories. First, those who use precision teaching believe that the best way to assure learning has occurred is to measure a difference in the rate of learning responses. Second, they believe that ‘‘learning most often occurs through proportional changes in behavior’’ (Cooper et al., 1987). Finally, future learning has a positive correlation with past performance gains or losses. REFERENCE Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall.
FURTHER INFORMATION Athabasca University Online Precision Teaching Training Module, http://psych.athabascau.ca/ html/387/OpenModules/Lindsley. The Standard Celeration Society: www.celeration.org.
TARA MIHOK PRESENT LEVEL OF EDUCATIONAL PERFORMANCE (PLEP) The present level of educational performance (PLEP), also referred to as the present level, is an integral part of an Individualized Education Program (IEP) that shares current information about the student’s functioning. The present level is the corner 275
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stone to which all areas of the IEP should connect by summarizing the basic information related to a student’s needs in one place. All goals and short-term objectives written later in the IEP process must relate directly to a need in the present level (Nebraska Department of Education Special Populations Office, n.d.). The PLEP covers all areas of development such as academics, daily living skills, social issues, behavior concerns, sensory needs, communication concerns, mobility issues, and vocational training. It also includes strengths, weaknesses, and learning styles of the individual (Rebhorn, 2002). There are a variety of ways that an IEP team can gain information regarding the PLEP of a student. These include evaluation information (in district and independently done), information shared by parents, regular education teacher reports, grades, examples of student work, special education teacher observations, information from therapists’ data collection, and, as appropriate, the information shared directly by the student (Massanari, 2002). The more information available, the more useful the present level will be to the IEP team. All information used must be current. There are specific items that should be included in a present level. Information regarding the impact of the child’s disability and how it pertains to progress within the general education setting is an absolute necessity when it comes to planning an appropriate IEP. This also pertains to how the preschool-aged child is involved in preschool activities and how their participation is affected by their disability (Rebhorn, 2002). When addressing how the child’s disability affects their participation in the general education curriculum, it is necessary to understand the requirements of the grade-level classroom. This would include what the student’s typical peers are required to learn and in what ways they are required to do so. The concerns related to the individual needs can be compared to the expectation of general education curriculum (Massanari, 2002). A student’s strengths should be directly addressed in the PLEP. These strengths can include academic skills, social skills, communication skills, or any other area the child shows as a strength (Rebhorn, 2002) or a relative strength. Strong abilities are important because they give the team a baseline of what a child can do well (LD Online, n.d.). These aptitudes are the foundations of instructional programming for individuals. By building on strengths through the creation of goals and objects based on abilities, success can be gained. Parental concerns should be placed directly within the present level (3rd Cycle Special Education Special Education Self-Assessment [SEMSA] Training, 2004). These concerns may relate to home, school, or long-term issues. Concerns may relate to academics, social skills, or behavior issues that are individual to their child. If appropriate, later items within the IEP may address these concerns through a goal, objective, or behavior intervention plan if necessary. The PLEP should contain information related to the most recent evaluations. This would include initial testing as well as 3-year reevaluation information. Specific test names and scores may be noted if appropriate. Information for an independent evaluation may also be included (Rebhorn, 2002). However, it is not necessary to list every test and score given. Often a statement of the child meeting the criteria for a specific diagnosis is included. 276
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Changes in the student’s functioning since the last IEP should be included in the present level of educational performance. This may include: met IEP goals and objectives, a change in placement, a change in school or living arrangement, or a change in health. Any change that affects the child and is relevant to education may be included. State and district-wide assessments should be addressed within the present level. This includes what assessments will be taken and modifications that will be used if necessary. A statement of exemption from certain tests may also be included. Scores received on state and district testing should be summarized and explained clearly in relation to the strengths and weaknesses of the student (3rd Cycle SEMSA Training, 2004). If a student is of an age to receive transition services, the present level should also contain information about employment and independent living issues and other final outcomes. Specific considerations should include academic and occupational skills the student will require, social and communication skills for success in a social setting, and personal management skills for independent living (LD Online, n.d.). Within the present level, there are items that should not be included. These include statements of when, where, or how services will be provided. This information cannot be determined until goals are set (LD Online, n.d.). These items will be acknowledged after the IEP goals and objectives are written in a later part of the IEP. The PLEP is an integral part of the IEP. It is the basis for goals and short-term objectives, modifications, behavior intervention plans, related services, and finally placement. It is imperative that the PLEP be measurable, include baseline data, include strengths and concerns, and include both academic and nonacademic information (WI Family Assistance Center for Education, Training, and Support, n.d.). The present level should be written in such a way that it would explain the needs of an individual child even to someone that did not know the child personally. REFERENCES LD Online. (1999). IEP: The process. Retrieved December 7, 2006, from www.ldonline.org/ article/6277. Massanari, C. B. (2002). Connecting the IEP to the general curriculum: A talking paper. Des Moines, IA: Mountain Plains Regional Resource Center. Nebraska Department of Education Special Populations Office. (n.d.). Present level of educational performance (PLEP). Retrieved June 6, 2005, from www.nde.state.ne.us/SPED/iepproj/develop/ pre.html. Rebhorn, T. (2002). Developing your child’s IEP: A parent’s guide. Washington, DC: National Information Center for Children and Youth with Disabilities. Tennessee State Department of Education, Nashville. Division of Special Education. (2001). Individualized Education Program (IEP). Nashville: Author. 3rd Cycle Special Education Special Education Self-Assessment (SEMSA) Training. (2004). Special Education Compliance MoDESE. Retrieved June 8, 2005, from http://dese.mo.gov/ divspeced/Compliance/MSIP_Monitoring/3rdCycleSpecEd_FY06_files/slide0028.htm. WI Family Assistance Center for Education, Training, and Support. (n.d.). The IEP process & product. Retrieved June 9, 2005, from www.wifacets.org/learning/IEPProc&Prod.ppt.
FURTHER INFORMATION Gibb, G. S., & Dyches, T. T. (2000). Guide to writing quality individualized education programs: What’s best for students with disabilities? Needham Heights, MA: Allyn & Bacon.
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PRESYMBOLIC THOUGHT Tillmann, J. D., & Ford, L. (2001). Analysis of transition services of individualized education programs for high school students with special needs. Eric Document Reproduction Service ED 456608. Trainor, A. A., Patton, J. R., & Clark, G. M. (2006). Case studies in assessment for transition planning. Austin, TX: Pro-Ed.
VALERIE JANKE REXIN
PRESYMBOLIC THOUGHT Presymbolic thought is the developmental and emotional stage, generally present between 8 and 24 months, that precedes symbolic thought. Presymbolic thought is manifested through gestures, such as pointing; vocalizations, such as ‘‘ma-ma’’ and ‘‘wa-wa’’; reciprocity, the back and forth behavior communicated between an infant and caregiver; and affect signaling, such as smiling, frowning, or crying. Presymbolic thought is the formation of the sense of ‘‘self.’’ A toddler’s ability to see cause and effect, discover patterns, and learn to discriminate are all part of presymbolic thought processes. FURTHER INFORMATION Greenspan, S., & Shanker, S. (2004). The first idea, how symbols, language, and intelligence evolved from our primate ancestors to modern humans. Cambridge, MA: Da Capo Press. Quill, K. A. (2000). Do-watch-listen-say: Social and communication intervention for children with autism. Baltimore: Brookes Publishing Co.
ANN PILEWSKIE
PREVALENCE Prevalence is the rate of occurrence of a condition, disease, or characteristic within a specified population group. To obtain prevalence, one takes all the persons in a group, country, etc. and counts the number of persons with a specific condition at that time. The prevalence for autism has been and continues to be controversial. From the 1960s to the 1980s, the prevalence rate for autism was considered to be 4 or 5 per 10,000. In the 1990s, the rate rose to 10 per 10,000. Current prevalence rates for autism spectrum disorders are between 1 in 500 (20/10,000) and 1 in 166 children (60/10,000; Centers for Disease Control and Prevention, 2006; Chakrabarti & Fombonne, 2005; Fombonne, 2003; Department of Health and Human Services, n.d.). REFERENCES Centers for Disease Control and Prevention. (2006, May 4). Fact sheet: CDC autism research. Retrieved May 16, 2006, from http://www.cdc.gov/od/oc/media/ transcripts/AutismResearch FactSheet.pdf. Chakrabarti, S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. American Journal of Psychiatry, 162, 1133–1141. Department of Health and Human Services, Centers for Disease Control and Prevention. (n.d.) How common are Autism Spectrum Disorders (ASD)? Retrieved May 17, 2006, from http:// www.cdc.gov/ncbddd/autism/asd_common.htm. Fombonne, E. (2003). The prevalence of autism. The Journal of the American Medical Association, 289, 87–89. Retrieved May 16, 2006, from www.jama.com.
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PRIMING Priming is a strategy that helps prepare children for an upcoming activity or event with which they normally have difficulty. This intervention can be used with children with exceptionalities who engage in avoidance behaviors when materials or tasks are presented, require extensive exploration time before they can participate with a material, need help with social interactions, or have trouble transitioning in their environment (Wilde, Koegel, & Koegel, 1992). It can occur at home or in the classroom and is most effective if it is built into the child’s routine. The actual priming session is short and concise and typically involves using the actual materials that will be used in the lesson or activity. Priming can occur the day before the activity, the morning of, or right before the activity (Zanolli, Daggett, & Adams, 1996). It can be performed by anyone that works with the child at home or at school. The purpose of priming is to introduce predictability into the information or activity, thereby reducing frustration and anxiety. It is not meant to teach the material, but only to familiarize the child with the material or the event in a nonthreatening and exploratory manner, increasing the probability of success. The first step in priming is to determine who is going to prime and what activities are going to be involved. It is important that everyone working with the child (home and school) be involved in this process. This can be done at an Individualized Education Program meeting or conference. A classroom teacher, resource room teacher, paraprofessional, parent, or even a peer may prime the student. Once the teacher, support staff, and parents have decided who will prime, it is important for open communication to exist between the teacher and family as to upcoming situations that may require priming. The following items must be addressed: 1. 2. 3. 4. 5. 6.
Who will prepare the priming materials? Where and when can the primer access the priming materials? How will the primer notify the teacher that the priming has occurred? How will it be determined that priming is an effective strategy? How will the problems be addressed? How will documentation of priming session results be shared?
After communication and collaboration strategies have been implemented, the actual priming session can take place. Develop a routine by choosing a specific time and place to hold the priming sessions. Familiarize (not teach!) the student with the new material. During the priming session, be patient and encouraging and always reward the student for all attempts to participate in the session. Remember, this is supposed to be a positive experience! Students have more motivation to complete tasks if they feel they have some control over their environment. If possible, allow the student to be involved in deciding where the priming session will be held and what reinforcements will be used. EXAMPLE OF PRIMING Bryan is having difficulty paying attention during circle time in kindergarten. He often disrupts other children particularly when the teacher is reading their daily story. 279
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During a parent conference, Bryan’s teacher and mother decided to use priming techniques at home to reduce his off-task behavior while in circle time. Bryan’s teacher gave his mother the book they were going to read the next day in circle time. Bryan’s mother read the book to Bryan as part of his bedtime routine that evening. She asked him general questions along the way, but did not interrupt the story. By doing this, Bryan became familiar with the pictures and the text in a comfortable setting. Because Bryan had heard the story the night before and knew what to expect from the story, he was able to focus on the book during circle time the following day. By familiarizing him with the book, Bryan attended to the story without disrupting the teacher or his peers. This example can be used at all grade levels for upcoming events and academic subjects. Communication between the teacher and the priming implementer continues after the priming session. After each session the priming implementer should notify the teacher of the results of the priming activity. Documentation as to whether the priming session had an impact on the student’s behavior is necessary to determine if the intervention is effective. See also accommodation. REFERENCES Wilde, L. D., Koegel, L. K., & Koegel, R. L. (1992). Increasing success in school through priming: A training manual. Santa Barbara: University of California. Zanolli, K., Daggett, J., & Adams, R. (1996). Teaching preschool age autistic children to make spontaneous initiations to peers using priming. Journal of Autism and Developmental Disorders, 26(4), 407–422.
FURTHER INFORMATION Bainbridge, N., & Myles, B. S. (1999). The use of priming to introduce toilet training to a child with autism. Focus on Autism and Other Developmental Disabilities, 14(2), 106–109. Koegel, L. K., Koegel, R. L., Frea, W., & Hopkins, I. G. (2003). Priming as a method of coordinating educational services for students with autism. Language, Speech, and Hearing Services in Schools, 34(3), 28–35. Moore, S. T. (2002). Asperger syndrome and the elementary school experience: Practical solutions for academic and social difficulties. Shawnee Mission, KS: Autism Asperger Publishing Company. Roy, D., & Mukherjee, N. (2005). Towards situated speech understanding: Visual context priming of language models. Computer Speech and Language, 19(2), 227–248. Schreibman, L., Whalen, C., & Stahmer, A. (2000). The use of video priming to reduce disruptive transition behavior in children with autism. Journal of Positive Behavior Interventions, 2(1), 3–11.
CYNTHIA K. VAN HORN
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KARLA DENNIS
PROBE Probes are assessments of small samples of behavior or skills under natural conditions, without teacher assistance or reinforcement. A probe evaluates how well a child learned a target skill. Some educators probe a student’s performance on a skill prior to each instructional sitting. The results are then used to guide instruction. See also assessment; reinforcer; single-subject design. 280
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FURTHER INFORMATION Salvia, J., & Ysseldyke, J. E. (2007). Assessment: In special and inclusive education (10th ed.). Boston: Houghton Mifflin Company. Scheuermann, B., & Webber, J. (2002). Autism: Teaching does make a difference. Belmont, CA: Wadsworth/Thomson Learning. Westling, D. L., & Fox, L. (2004). Teaching students with severe disabilities (3rd ed.). Upper Saddle River, NJ: Prentice Hall.
THERESA L. EARLES-VOLLRATH PROCEDURAL SAFEGUARDS Procedural safeguards are the protections that federal law, the Individuals with Disabilities Education Improvement Act of 2004 (IDEA), affords to all students and their caregivers as they navigate the educational system. Some of the procedural safeguards include the right to inspect records, receive prior written notice before meetings, participate in meetings, register complaints, and obtain an outside independent evaluation. REFERENCE Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004).
FURTHER INFORMATION Wright, P. W. D. (2004). The individuals with disabilities education improvement act of 2004: Overview, explanation, and comparison, IDEA 2004 v. IDEA 97. Retrieved May 26, 2006, from http://www.wrightslaw.com.
PAUL G. LACAVA PROMPT DEPENDENCE Prompt dependence is an individual’s reliance on prompts rather than attempting independence. This most often occurs when prompts have been overused (highly invasive prompts being used when less invasive ones are appropriate) or not faded quickly enough as the individual becomes capable of independent success. For example, when learning writing, a student may hold a pencil but not attempt to write, instead waiting for an adult to do the writing through prompts. Allowing a student to remain dependent on prompts in several areas of functioning can also lead to learned helplessness. Over time, the student may begin to believe he or she is not capable of completing a task independently. See also graduated guidance; guided compliance; prompt hierarchy; prompting. KATIE BASSITY PROMPT HIERARCHY A prompt hierarchy is a series of supports provided to help a learner perform new skills and behaviors. The prompts are arranged by the level of support they provide. From least to most supportive, these prompts generally include natural environmental stimuli, gesturing, verbal prompting, modeling, and physical assistance. A decreasing prompt technique initially provides a prompt that ensures a correct response and systematically fades the prompt down the hierarchy until the learner achieves independence. For example, in teaching a child to touch his head when instructed, the 281
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teacher will first give the instruction, ‘‘Touch your head,’’ paired with moving the child’s hand to touch his head. Then the teacher will repeat the instruction while touching his elbow and moving the hand up to his head. Following this, the teacher will repeat the instruction while modeling the correct response or pointing to the child’s head. Finally, after some repetition and this prompt fading, the child should be able to touch his head when given the verbal instruction. In contrast, an increasing prompt technique allows the learner to first attempt the behavior and increases the level of prompt as needed until the learner successfully performs the behavior. In least-to-most prompting, the child is given the chance to increase his or her spontaneous responses for skills already mastered. If the child does not respond spontaneously, then the teacher would prompt from the least intrusive prompt to the most intrusive prompt to reach a correct response from the child (Anderson, Taras, & Cannon, 1996). See also graduated guidance; guided compliance; prompt dependence; prompting. REFERENCES Anderson, S. R., Taras, M., & Cannon, B. O. (1996). Teaching new skills to young children with autism. In C. Maurice, G. Green, & S. L. Luce (Eds.), Behavioral intervention for young children with autism (pp.181–194). Austin, TX: Pro-Ed.
TARA MIHOK
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ANDREA HOPF
PROMPTING Prompting is any physical, verbal, or gestural assistance given to an individual to aid in the completion of or successful response to a given task. Prompts are generally used in the initial teaching stages of a new task or behavior. Within each type of prompting (physical, verbal, or gestural) there are several different levels of prompts. For example, physical prompts range from highly intrusive (such as hand-over-hand assistance) to least intrusive (such as placing a correct response closer to the student or a light touch to the body part needed for a successful response). It is preferable to use the least intrusive prompt necessary for the individual to succeed. For example, the intrusive hand-over-hand prompt would only be used if the individual could not succeed supported by a less invasive prompt. In addition, it is important to fade prompts as quickly as possible to allow the student to complete as much of the task independently as possible. It is important to use the form of prompting, which can most easily be faded, while ensuring the student’s success. As always, it is also important to maintain consistency, particularly across individuals working on the same skills. See also graduated guidance; guided compliance; no-no prompt procedure; prompt dependence. KATIE BASSITY PRONOUN ERRORS A common speech characteristic for individuals with autism is pronoun error or pronoun reversal. This is when an individual substitutes various pronouns such as saying ‘‘You’’ when ‘‘I’’ should be used. An early myth of autism was that pronoun difficulties were the child’s misunderstanding of their own identity. Research has clearly 282
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shown that this is not the case, as pronoun errors are common in typical child development. However, most children develop more sophisticated language over time while those with autism may not. Children with autism may exhibit pronoun errors due to their echolalic use of language. That is, if they hear someone say, ‘‘Do you want ice cream?’’ they may repeat back ‘‘you want ice cream.’’ Pronoun errors may also be due to confusion over when to use the correct tenses. See also echolalia: immediate, delayed, mitigated. FURTHER INFORMATION Frith, U. (1989). Autism: Explaining the enigma. Oxford, UK: Blackwell Publishers.
PAUL G. LACAVA PROPRIOCEPTION Muscle, joint, and tendon movements activate the receptors of the proprioceptive system, making carrying multiple objects down a packed hallway possible by providing information about the location and movement of a body part. For some individuals with autism spectrum disorder, these movements are not automatic, resulting in poor posture, incoordination, and chronic fatigue accompanying physical activity. See also sensory integration; vestibular. KELLY M. PRESTIA PROSODY Prosody is an overall term used to describe the rhythm, intonation, and stress during speech production—that is, the importance of how something is said as opposed to the content of the speech. Both are essential to understanding and communicating language, emotion, intent, and so on. Some of the difficulties facing those with autism spectrum disorders (ASD) include producing understandable tone of voice, pitch, voice volume, pauses between syllables and words, speech rate, and so forth. Although not a characteristic of all, many with ASD have prosodic challenges that may or may not be changed over time. This communication challenge with both expressing and understanding prosody may contribute to social and relationship difficulties. FURTHER INFORMATION Gerken, L., & McGregor, K. (1998). An overview of prosody and its role in normal and disordered child language. American Journal of Speech-Language Pathology, 7, 38–48. Prosody and Autism Spectrum Disorders. (n.d.). Retrieved July 21, 2006, from http://www. qmuc.ac.uk/ssrc/prosodyinASD/. Shriberg, L. D., Paul, R., McSweeny, J. L., Klin, A., Cohen, D. J., & Volkmar, F. R. (2001). Speech and prosody characteristics of adolescents and adults with high-functioning autism and Asperger syndrome. Journal of Speech, Language, and Hearing Research, 44, 1097–1115.
PAUL G. LACAVA PROTO-DECLARATIVE Proto-declarative pointing is when a baby or toddler uses their index finger/hand to point to an object to indicate that they have an interest in something and that they want another person to share in their attention. The key to this joint attention behavior is that the baby/toddler is indicating communicative intent with another 283
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person. Proto-declarative pointing is a behavior that typically developing youngsters begin to use around 14 months of age and is often delayed or absent in toddlers with autism. The absence of three behaviors (proto-declarative pointing, gaze response, and pretend-play) in toddlers at 18 months of age is often highly predictive of a future autism diagnosis. See also autistic disorder; theory of mind. FURTHER INFORMATION Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., et al. (2000). A screening instrument for autism at 18 months of age: A 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694–702. Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press. Frith, U. (1989). Autism: Explaining the enigma. Oxford, UK: Blackwell Publishers. Gerrans, P. (1998). The norms of cognitive development. Mind and Language, 13, 56–75.
PAUL G. LACAVA
PROTO-IMPERATIVE Proto-imperative pointing is when an infant attempts to obtain something by using their index finger/hand to point to an object while verbalizing and alternating looking at their parent/caregiver. This behavior often begins around 1 year of age in typically developing youngsters. The child points to an object that they want and then looks to another person to indicate that they want it. The child is indicating what they want by verbalizing, pointing, and alternating looking at the adult. This behavior is developmentally part of joint attention behaviors, and toddlers with autism typically use this behavior but sometimes without eye contact or by pushing/taking the adult to the object they want. FURTHER INFORMATION American Academy of Pediatrics, Committee on Children with Disabilities. (2001). Technical report: The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children [Electronic version]. Pediatrics, 107. Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., et al. (2000). A screening instrument for autism at 18 months of age: A 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694–702. Gerrans, P. (1998). The norms of cognitive development. Mind and Language, 13, 56–75.
PAUL G. LACAVA
PROTOTYPE FORMATION Prototype formation involves the integration of information and the generalization of previously learned concepts to new situations. To assess prototype formation, utilize learning tasks that can be solved using a rule-based approach and a second set of tasks in which rules did not govern category membership (prototype tasks). Individuals with autism spectrum disorders have difficulty categorizing new information by forming prototypes and, instead, tend to rely on a rule-based approach to learning. JEANNE HOLVERSTOTT 284
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PSYCHIATRIST A psychiatrist is a medical doctor who specializes in the diagnosis, treatment, and prevention of mental and emotional disorders. Psychiatrists can diagnose individuals with an autism spectrum disorder and can prescribe medication. STEVE CHAMBERLAIN PSYCHOACTIVE MEDICATIONS. See Antipsychotic Medications PSYCHOBIOLOGY Psychobiology refers to the scientific study of the biological bases of behavior and mental states. Psychobiology and neuroscience both study the central nervous system, using techniques such as functional magnetic resonance imaging (fMRI), making it difficult to establish if the two are branches or one in the same study. As such, the terms are often used interchangeably. Psychobiology has been criticized because of its reductionist approach to the development of a disorder, which reduces human behavior to genetics; this position is contrasted by researchers who adopt a functionalist approach, which seeks to use psychological concepts to explain disorders of the mind. See also genetic factors/heredity. JEANNE HOLVERSTOTT PSYCHOEDUCATIONAL PROFILE–THIRD EDITION (PEP-3) The Psychoeducational Profile–Third Edition (PEP-3; Schopler, Lansing, Reichler, & Marcus, 2005) is an evaluation that addresses the unique strengths and needs for those with autism and other related disabilities. The PEP-3 can be used to diagnose, chart developmental levels, and develop programming goals. The PEP-3 has a standardized, norm-referenced section that is administered to children and an informal report that is completed by the parent/caregiver. Some key features of the PEP-3 are its flexibility in administration and ability to be used with students who have severe cognitive and language impairments. The PEP-3 is appropriate for children ages 2 through 71=2 or for those who are older but functioning at lower levels. See also norm-referenced assessment; standardization. REFERENCES Schopler, E., Lansing, M. D., Reichler, R. J., & Marcus, L. M. (2005). PEP-3: Psychoeducational Profile (3rd ed.): TEACCH Individualized Psychoeducational Assessment for Children with Autism Spectrum Disorders. Austin, TX: Pro-Ed.
PAUL G. LACAVA PSYCHOLOGIST A psychologist is a scientist who studies psychology, the study of human behavior and mental processes. Psychologists provide mental health care services, such as individual and family counseling, and contribute to the research base on human behavior/ mental processing. Psychologists can diagnose autism and are major contributors to the autism research base. STEVE CHAMBERLAIN 285
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PSYCHOMETRICS Psychometrics is the field of study concerned with the design, administration, and interpretation of tests that measure the psychological characteristics (i.e., knowledge, skills, abilities, and personality traits) of an individual. THERESA L. EARLES-VOLLRATH PSYCHOPHARMACOLOGY Psychopharmacology broadly refers to the branch of science that studies the effect of drugs on brain chemistry and human behavior. It is also a term used to describe treatment with medications for those with emotional, psychiatric, or mental disorders. Psychopharmacology has been used for over 50 years to treat those with autism spectrum disorders (ASD). However, prescriptions for those with ASD have increased over the last decades. It has been estimated that 50 percent of those with an ASD are taking at least one prescription medication to help with the various symptoms. To date, little research has concluded the effectiveness of many psychotropic medications for use with children. FURTHER INFORMATION Aman, M. G., Lam, K. S., & Collier-Crespin, A. (2003). Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio. Journal of Autism and Developmental Disorders, 33, 527–534. Tsai, L. (2000). Children with autism spectrum disorder: Medicine today and in the new millennium. Focus on Autism and Other Developmental Disabilities, 15, 138–145. Tsai, L. (2002). Taking the mystery out of medications in autism/Asperger syndromes: A guide for parents and non-medical professionals. Arlington, TX: Future Horizons.
PAUL G. LACAVA PSYCHOSOCIAL Psychosocial refers to psychological development pertaining to relationships with others and the adjustments necessary to navigate social situations. Psychosocial treatments involve a licensed psychiatrist, psychologist, social worker, or counselor, with the therapist and psychiatrist sometimes working together as the psychiatrist prescribes medications and the therapist monitors the individual’s progress. JEANNE HOLVERSTOTT PUNISHMENT Punishment is an aversive stimulus contingent on a behavior that decreases the likelihood that the behavior will occur in the future (Azrin & Holz, 1966). Positive punishment consists of applying an aversive stimulus. Examples of positive punishment include giving a child detention for talking in class or spanking a child for violent behavior. Negative punishment consists of removing a positive reinforcer. Examples of negative punishment include grounding a teenager for breaking curfew or taking away a video game system for poor grades. Response cost is a form of negative punishment (Alberto & Troutman, 1999). Contrary to popular use of the term, punishment does not have to be aversive to the person to whom it is being applied. The 286
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consequence is punishing simply because the frequency of the behavior will be lessened in the future (Cooper, Heron, & Heward, 1996). See also applied behavior analysis. REFERENCES Alberto, P. A., & Troutman, A. C. (1999). Applied behavior analysis for teachers. Upper Saddle River, NJ: Merrill. Azrin, N. H., & Holz, W. C. (1966). Punishment. In W. K. Honig (Ed.), Operant behavior: Areas of research and application (pp. 380–447). New York: Appleton-Century-Crofts. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall.
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KATE PETERS
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R RDI PROGRAM The RDI Program educates and guides parents and teachers of children with autism spectrum disorders (ASD) and others who interact and work with the child. It is a ‘‘mission oriented’’ program. This means that it is not wedded to any specific techniques. The mission of the RDI Program is to develop the most effective methods, whatever they might be, to remediate those specific deficits that impede people on the autism spectrum from productive employment, independent living, marriage, and intimate social relationships. Current treatment and intervention services do not address the abilities that ASD people need to attain a good quality of life. RDI strives to develop ‘‘real-world’’ dynamic abilities that will translate into future success. Remediation is a gradual, systematic process of correcting a deficit, to the point where it no longer constitutes an obstacle to reaching one’s potential. Remediation is a developmental process. It involves addressing early areas that, due to the neurological disorder, were never mastered. We search for the period in development where the child ‘‘hit a wall’’ and was not able to progress further. We go back and build competence from that point. Ongoing program evolution is critical if we are to help increasing numbers of individuals on the autism spectrum to attain a quality of life. The latest findings from developmental psychology and autism research are carefully ‘‘engineered’’ to provide clinical methods that improve effectiveness. Continual program evaluation critically determines which program components are effective and highlights areas of necessary modification. RDI empowers families and those who are primarily involved in caring for and educating the child. The bulk of resources are invested in preparing parents and teachers to act as participant guides, creating daily opportunities for the child to respond in more flexible, thoughtful ways to novel, challenging, and increasingly unpredictable settings and problems. Both fathers and mothers are essential participants in the treatment process. Preliminary research indicates that the RDI Program is a powerful, effective means for increasing children’s capacity and motivation for experience sharing, as well as their flexibility and adaptation. Parents engaged in RDI overwhelmingly report significant improvement in the quality of life of the ASD child, their own quality of life, as
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well as the lives of their nonaffected children (Gutstein, 2005; Gutstein, in press; Gutstein, Burgess, & Montfort, in press; Gutstein, Gutstein, & Baird, 2006). While family is central to the RDI model, treatment success also depends upon the commitment of school staff and other professionals to implement essential principles of remediation. Real-world competence emerges from children participating as active, but junior partners—‘‘apprentices,’’ who are carefully guided by parents and other adults. Guides have access to a comprehensive system of over 1,200 developmentally staged objectives, which they use to carefully provide increasingly complex problems and challenges. Guides help the child capture and stockpile critical memories that build an experiential repository of success in gradually more complex environments. Parents are taught to rethink their daily lifestyle, structuring activities throughout the day to provide safe, but challenging opportunities for discovery. WHAT IS
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¥ Systematic, long-term remediation of specific deficits that define autism spectrum disorders and limit the quality of life of people on the autism spectrum ¥ Preparing parents and teachers to act as participant guides. Restoring the critical early guided-participation relationship damaged by ASD ¥ Creating numerous daily opportunities for the child to respond in more flexible, thoughtful ways ¥ Helping children capture and stockpile critical memories that build a repository of competence, in gradually more complex environments
Education and coaching is implemented through the following methods: ¥ Small-group, intensive parent education ¥ Customized, balanced remediation planning, emphasizing a biopsychosocial model ¥ Careful selection and evaluation of developmentally based objectives. Each objective has clear criteria for cognitive mastery ¥ Individualized consultation sessions with parents ¥ Regular video-taped review of samples of parent-child performance in the home ¥ School staff training and consultation
SELECTING THE FOCUS OF REMEDIATION Over 200 research studies have, over the past 15 years, attempted to determine what deficit areas are unique and universal to individuals on the autism spectrum. In performing a comprehensive analysis of these studies we came to some important conclusions: 1. Autism spectrum disorders cannot be defined by ‘‘discrete’’ skills, such as speech, social skills, academic skills, or behavioral compliance (Hobson, 2002; Klin, Jones, Schultz, & Volkmar, 2003; Mayes & Calhoun, 2001; McGovern & Sigman, 2005). Rather, they appear to be related to ‘‘continuous process’’ abilities (Fogel, 1993). 2. Standard forms of measuring intelligence do not predict the severity of the autism itself (Howlin, 2003; Howlin & Goode, 2000). 3. Research results overwhelmingly support the idea that ASDs involve a wide range of neurological vulnerabilities that lead to more homogeneous deficits in certain types of complex information processing, which then lead to difficulties in all aspects of life (Belmonte et al., 2004; Just, Cherkassky, Keller, & Minshew, 2004; Minshew, Johnson, & Luna, 2001; Minshew, Williams, & Goldstein, 2004; Minshew, Goldstein, & Siegel, 1997).
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The deficits universally found in ASD appear to belong to what is termed Dynamic Intelligence (Day & Cordon, 1993; Grigorenko & Sternberg, 1998; Sternberg, Forsythe, Hedlund, & Horvath, 2000). The ability to maintain employment, friendship, marriage, and most aspects of daily life are dependent on dynamic abilities. The dynamic elements of settings provide us with opportunities for growth, discovery, integration, and collaboration. We go to hear someone lecture not because we want them to repeat what they have written in a book, but to hear something new. When we have a conversation, we certainly do not ask to, once again talk about what we spoke about last week. We choose friends and mates who will encourage us to develop and grow. We spend much of our lives choosing to enter situations of greater dynamic potential. You are probably more familiar with static intelligence, such as the abilities measured in IQ tests. Think of static intelligence as measuring what you know, while dynamic intelligence measures what you can do with what you know in the real world. The following chart outlines some critical distinctions between dynamic and static forms of intelligence: Dynamic Continuous processing Regulating and adapting Flexible problem-solving Dynamic analysis Episodic memory Experience sharing Self-evaluation and self-regulation Simultaneous Flexible and contextual content use Static Discrete processing Performing Absolute problem-solving Static analysis Rote-procedural memory Instrumental communication Behavioral compliance Sequential Content accumulation
Almost all human communication and interaction occurs in dynamic encounters. The term dynamic implies the continual introduction of new information as well as the ongoing transformation of current information based upon changed contexts and relationships (Gaussen, 2001; Granic & Hollenstein, 2003; Lewis, 2000). The dynamic elements of settings provide us with opportunities for growth, discovery, integration, and collaboration. Dynamic encounters provide an enormous payoff, but require a good deal of effort and different types of abilities than static environments. Because dynamic environments require continual evaluation and adaptation, they are referred to as regulatory. In more static settings, success accrues from accumulating enough right answers and correct solutions and applying them in association with specific setting cues. In other words, if I pick the right response, formula, or solution and apply it in the way I was taught, I will be successful. In contrast, the application 291
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of any single response or formula is a guarantee of failure in dynamic settings. Instead of absolute thinking, they require relative or regulatory functioning. Regulation involves making continual adjustments to maintain optimal states of functioning in dynamic, constantly evolving systems. Regulation requires ongoing monitoring of the system and detection of important changes. It also requires the ability to rapidly distinguish important (central) from unimportant (peripheral) changes in the system and to rapidly adapt actions to maintain functioning given system changes. By the end of their second year, typical infants have gone a long way towards learning to manage the difficulties inherent in dynamic systems. The 12-month-old actually prefers dynamic encounters because he feels competent in managing the tension inherent in such challenges and has already learned that the ‘‘edge’’ of his competence is the most rewarding place to be (Sroufe, 1996). Children with ASDs leave the pathway of dynamic learning somewhere in the first two years of life and are thus deprived of further opportunities for dynamic learning. Domains of Dynamic Intelligence In order to develop a systematic progression of objectives, from rudimentary to highly sophisticated cognitive abilities, we have separated the elements of dynamic intelligence into five ‘‘processes.’’ Creative-Flexible Thinking Creative thinking involves altering problem solutions and ways of perceiving a problem, based on ongoing monitoring of current effectiveness. Flexible problem-solving involves finding ‘‘work arounds’’ when running into unexpected problems, or lacking the typical resources to solve problems. This is a critical problem for people with ASD (Berger, Aerts, van Spaendonck, & Cools, 2003; Channon, Charman, Heap, Crawford, & Rios, 2001; Craig & Baron-Cohen, 1999; Emerich, Creaghead, Grether, Murray, & Grasha, 2003; Jarrold, 2003). ¥ Think of how often in a typical way problems arise that require flexibility? ¥ Consider how rare it is for you to feel completely certain about your decisions? ¥ Are the proper tools and resources always available when you need them? How do you manage?
Dynamic Analysis Environments present many potential ways we can organize, relate, and prioritize information. Dynamic analysis is the act of evaluating the adaptational significance of our environment on a moment-to-moment basis. It entails actively searching for opportunities for growth and goal attainment. We integrate the realities of environmental demands, constraints and resources, with personal interests. Dynamic analysis is only possible when we learn that there are multiple ways we can organize meaning from any particular event or setting. Research has confirmed problems in dynamic analysis as a core aspect of ASDs (Burack, 1994; Dawson et al., 2004; Goldstein, Johnson, & Minshew, 2001; Hoeksma, Kemner, Verbaten, & Van Engeland, 2004; Hughes & Russell, 1993; Landry & Bryson, 2004; Lopez & Leekam, 2003; Mann & Walker, 2003). ¥ How many times in a day do you employ ‘‘good enough’’ thinking? ¥ How do you know when a change is central or peripheral? ¥ How well would you function if you did not analyze contextual information?
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Episodic Memory Episodic memory involves more than just remembering details of a past episode. It entails extracting something that is personally important, different, changed, or that stands out and has personal meaning to us. Without episodic memories, you do not have access to your personal past in a manner that allows you to project into the future. You do not develop the ability to anticipate and think in a hypothetical sense about what might happen in your future. You do not learn to dream, create goals, plans, and really tie the past in with the future. Over 20 research studies confirm that episodic memory deficits appear to be universal in ASD (Bowler, Gardiner, & Grice, 2000; Bowler, Gardiner, & Berthollier, 2004; Millward, Powell, Mewwer, & Jordan, 2000; Shalom, 2003). ¥ What would your life would be like if you could not mentally prepare yourself for potential future events? ¥ How would you motivate yourself to reach goals if you could not ‘‘preview’’ the feeling of success prior to reaching it? ¥ How successful would you be if you were unable to learn from your own mistakes?
Experience Sharing Human communication differs from all other species in that it offers the opportunity to share our subjective experiences of the world. The essence of all human communication entails sharing and integrating experiences, combining something from you with something from me with the hope that something unique and unexpected emerges. As we become proficient communicators we learn that we can fluidly share our internal and external experiences as well as linking our past, present, and future. Experience sharing requires ongoing ‘‘continuous process’’ monitoring and evaluation of mutual comprehension and interest. Researchers have noted a lack of experiencesharing communication in individuals on the spectrum, regardless of their cognitive or language abilities. In fact, the single best predictor of future language for young children on the autism spectrum is the degree to which they develop the earliest manifestations of experience sharing (Baron-Cohen, Baldwin, & Crowson, 1997; Berger, 2006; Bono, Daley, & Sigman, 2004; Camaioni, Perucchini, Muratori, Parrini, & Cesari, 2003; Downs & Smith, 2004; Geller, 1998; Gutstein, 2000; Gutstein & Whitney, 2002; Hobson, 1989; Hobson & Lee, 1998; Keen, 2003). ¥ What is the role of language in communication? Can you communicate without words? What happens to adults who have a stroke and lose their language? Are ‘‘non-verbal’’ ASD children really only ‘‘non-verbal’’ or are they also ‘‘non-communicative’’? ¥ Imagine a conversation that did not include the desire to create bridges between minds. What is there to talk about?
Self Awareness Self awareness involves developing a coherent sense of self; a ‘‘me’’ that we perceive as unique and coherent, even as it continues to grow and develop. The self becomes the primary organizing principle for appraisal and evaluation. The lack of a self in autism proves devastating in terms of the problem-solving capability of individuals; as they are unable to develop memories of themselves as problem-solving agents, they are therefore unable to build up stores of remembered skills in such a way that they 293
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can reflect on them strategically. We develop our sense of self through contrast and comparison with others. ASD individuals appear to have striking deficits in selfdevelopment (Dawson & McKissick, 1984; Gomez & Baird, 2005; Hill & Russell, 2002; Klein, Chan, & Loftus, 1999; Lee, Hobson, & Chiat, 1994; Nair, 2004; Powell & Jordan, 1993; Russell & Hill, 2001; Toichi, Kamio, Okada, Sakihama, Youngstrom, et al., 2002). THE INTERSUBJECTIVE RELATIONSHIP The Intersubjective Relationship (IR) is perceived by developmental psychologists as the essential lab for learning to function in dynamic systems—environments in which new information is continually introduced and where success requires ongoing monitoring of the meaning of information in a contextual manner (Tomasello, 1999; Trevarthen & Aitken, 2001). For information, ideas, and mental skills to move from the social-interactive plane to the internal-thinking plane, the adult and child must strive for a common approach to the situation. In the IR each participant in the dialogue strives to grasp the subjective perspective of the other, an effort that results in a ‘‘meeting of minds’’ in which the partner’s thoughts make contact, connect, and coincide. In a sense, through participating in the IR, children are able to temporarily ‘‘appropriate’’ their parents’ mental processes—their ways of analyzing, evaluating, and reacting to the changes in their world. ASD children’s early failure to develop intersubjectivity is the most documented deficit in the autism research (Bacon, Fein, Morris, Waterhouse, & Allen, 1998; Charman et al., 1997; Dawson, Hill, Spencer, Galpert, & Watson, 1990; Gipps, 2004; Mundy, 1995; Mundy, Kasari, & Sigman, 1992; Mundy & Sigman, 1989; Robertson, Tanguay, L’Ecuyer, Sims, & Waltrip, 1999; Trevarthen, Aitken, Papoudi, & Robarts, 1996). It has also been found by researchers to be the deficit that is most persistent and resistant to change over time (Sigman, 1998; Sigman & McGovern, 2005). A primary focus for RDI consultants is helping parents and their children restore the critical IR that is inherently damaged by ASD. Our hope is that through reengaging the IR, the child, through parental guidance, can begin to develop on the pathway of dynamic learning opportunities and can internalize the complex mental processes that are essential to attaining a quality of life. PARENTS LEARN TO BE COMPETENT GUIDES Guided participation, a term associated with psychologist Barbara Rogoff, describes the way that adults teach children to become competent in real-world thinking and problem solving (Rogoff, 1990, 1991, 1993). When we study societies and cultures all over the world, it is very clear that the way in which children learn to function in dynamic systems is not through direct instruction. You have never taken a course in any of the areas of dynamic intelligence. Rather we learn through acting as an inexperienced apprentice with an adult guide who gradually introduces us to more and more complexity in the world. Our guides also gradually require us to become more of a partner in maintaining the regularity of the system. The underlying ‘‘engine’’ of guided participation is intersubjectivity: a sharing of focus and purpose between children and their more skilled partners (Harding, Weissmann, Kromelow, & Stilson, 1997; Hodapp, Goldfield, & Boyatzis, 1984; Kaye, 1982; 294
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Tronick & Gianino, 1986). By participating in thousands of carefully constructed encounters involving shared understanding and problem solving, children appropriate an increasingly advanced understanding of and skill in managing the intellectual problems of their community. The aim of The RDI Program is to restore the guided participation relationship that is universally lost due to the ASD child’s neurological vulnerabilities. Support and challenge have to be in balance for parent-child interactions to be optimal for the child’s development. Parents are taught to combine support with setting of challenging action goals to assist the child to achieve beyond his or her current level of mastery. Parents learn to focus their support on those aspects of tasks that are just beyond the level of mastery currently attained by their children (onestep-ahead strategy). Such a strategy is optimal for maintaining a functional balance between challenging a child’s developmental potential and balancing for its weaknesses. As children gain in mastery, parents learn to transfer greater responsibility for problem-solving and regulatory monitoring to the child. The parent objective is not just to maximize the number of their child’s successes by balancing for their weaknesses, but, additionally, to sustain a level of challenge that they deem to be most promoting their children’s development of competence. In summary, adults learn to encourage and advise their child to attain the level of performance just beyond their current mastery and avoid providing superfluous assistance or clues so as not to be overfacilitative to the child’s performance. They confront the child with additional cognitive demands for attaining a new level of performance when lesser challenges have been mastered, and they gradually transfer the responsibility for problem-solving, regulating, evaluating, and managing progressively more complex real-world problems and settings. REFERENCES Bacon, A., Fein, D., Morris, R., Waterhouse, L., & Allen, D. (1998). The responses of autistic children to the distress of others. Journal of Autism and Developmental Disorders, 28, 129–142. Baron-Cohen, S., Baldwin, D., & Crowson, M. (1997). Do children with autism use the speaker’s direction of gaze strategy to crack the code of language? Child Development, 68, 48–57. Belmonte, M., Cook, E., Anderson, G., Rubenstein, J., Greenough, W., Beckel-Mitchener, A., et al. (2004). Autism as a disorder of neural information processing: Directions for research and targets for therapy. Molecular Psychiatry, 9, 646–663. Berger, H., Aerts, F., van Spaendonck, K., & Cools, A. (2003). Central coherence and cognitive shifting in relation to social improvement in high-functioning young adults with autism. Journal of Clinical & Experimental Neuropsychology, 25, 502–511. Berger, M. (2006). A model of preverbal social development and its application to social dysfunctions in autism. Journal of Child Psychology and Psychiatry, 47, 338–371. Bono, M. Daley, T., & Sigman, M. (2004). Relations among joint attention, amount of intervention and language gain in autism. Journal of Autism & Developmental Disorders, 34, 495– 505. Bowler, D., Gardiner, J., & Berthollier, N. (2004). Source memory in adolescents and adults with Asperger’s syndrome. Journal of Autism & Developmental Disorders, 34, 533–542. Bowler, D., Gardiner, J., & Grice, S. (2000). Episodic memory and remembering in adults with Asperger’s syndrome. Journal of Autism and Developmental Disorders, 30, 305–316. Burack, J. (1994). Selective attention deficits in persons with autism: Preliminary evidence of an inefficient attentional lens. Journal of Abnormal Psychology, 103, 535–543.
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REACTIVE ATTACHMENT DISORDER OF INFANCY OR EARLY CHILDHOOD The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000) defines two types of reactive attachment disorder: disinhibited type and inhibited type. In the former (disinhibited), the child lacks selectivity in the people from whom comfort is sought, shows clinging behavior in infancy, or indiscriminately friendly behavior in early or middle childhood coupled with attention seeking and poorly modulated social interactions. In the latter (inhibited), the child may respond to caregivers with a mixture of approach, avoidance, and resistance to comfort. They lack emotional responsiveness and may act aggressively in response to distress—either their own or another person’s. It is clear from these descriptions that there could be some difficulty in distinguishing reactive attachment disorders from autism spectrum disorders as the behaviors described may be evident in both. Research has indicated that the only way to clearly distinguish between the two in terms of the social difficulties is that reactive attachment disorders tend to respond more positively to interventions and therapy leading to the child no longer showing the behaviors (e.g., when placed in stable and positive foster care the child becomes more reciprocal and shows rapid emergence of social responsiveness), or that there has been a clear history of neglect or abuse in early childhood in those who develop reactive attachment disorder. According to the DSM-IV-TR (APA, 2000), the following criteria are relevant for diagnosis of reactive attachment disorder: (a) severity—there is no attachment in any meaningful sense and no enduring relationship with caregivers; (b) pervasiveness— attachment difficulties must be seen across several different contexts and with several different caregivers; (c) distress or disability—the disorder causes the child persistent social disability or persistent distress; (d) onset before age five years; (e) not autistic—the lack of other autism impairments such as repetitive or ritualistic behaviors or communication difficulties indicates that the child does not have an autism spectrum disorder that could explain the impaired social relationships; (f) mental age greater than 10–12 months; and (g) pathogenic care—an early abnormal care giving environment either due to several changes of primary caregiver or due to neglect of the child’s emotional or physical needs. Reactive attachment disorders are rare, and are differentiated from insecure attachments. Around 40 percent of children may be classified as insecurely attached (Goodman & Scott, 2005, p. 123), but in insecure attachment this can relate to only one caregiver with the child being appropriately and securely attached to other caregivers. The condition is therefore not pervasive. Insecure attachment also does not necessarily lead to difficulties with social responsiveness and relatedness, whereas this is a core characteristic of reactive attachment disorder. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Goodman, R., & Scott, S. (2005). Child psychiatry (2nd ed.). Oxford: Blackwell Publishing.
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FURTHER INFORMATION O’Connor, T. G. (2002). Attachment disorder of infancy and childhood. In M. Rutter & E. Taylor (Eds.), Child and adolescent psychiatry (4th ed., pp. 776–792). Oxford: Blackwell Science. Zeanah, C. H. (1996). Beyond insecurity: A reconceptualisation of attachment disorders of infancy. Journal of Consulting and Clinical Psychology, 64, 42–52.
FIONA J. SCOTT RECEPTIVE LANGUAGE Receptive language is the ability to understand and process spoken and written language (listening and reading). Processing auditory information is difficult for some individuals with autism. It is important to remember that frequently information, directions, rules, corrections, and procedures are presented verbally. Consider incorporating pictures, icons, gestures and sign language. See also American Sign Language; visual strategies. RASCHELLE THEOHARRIS RECIPROCAL COMMUNICATION/INTERACTION Reciprocal communication refers to a specific component of interaction involving appropriate communication based on the understanding of the conversational partner’s message. Reciprocal communication tends to extend conversations as an individual’s comment (i.e., ‘‘I am tired’’) is met by comments and questions (i.e., ‘‘Did you not get enough sleep last night?’’). Challenges with reciprocity, often referred to as ‘‘give and take,’’ are hallmarks of autism spectrum disorders (ASD). Comments that would serve as a starting point for reciprocal communication may fail to receive a response from individuals with ASD; consequently, communication with or between individuals with ASD can seem disjointed or one-sided. Individuals with ASD are often explicitly taught to engage in reciprocal communication. See also American Sign Language; augmentative and alternative communication; Picture Exchange Communication System; social skills; visual strategies. JEANNE HOLVERSTOTT RED FLAGS A red flag is an alert or warning intended to draw attention to a problem or potential problem. Certain behaviors can be red flags that alert parents and professionals to a child’s potential needs and/or delays. There are numerous red flags that differentiate those with autism spectrum disorder (ASD) from children with other developmental disabilities and from typically developing youngsters. These red flags include: (a) lack of appropriate eye gaze; (b) coordination of eye gaze; (c) facial expression, gestures, and sounds; (d) lack of warm expression to others with gaze; (e) unusual vocal prosody; (f) repetitive movements of the body, hands, etc.; (g) not responding to name; and (h) absence of showing interest, sharing interest, or enjoyment (Wetherby & Woods, 2002). The Centers for Disease Control and Prevention started a new campaign in 2005 that highlighted the need for parents of infants and toddlers to know the warning signs of autism. 300
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REFERENCES Centers for Disease Control and Prevention. (2005). Learn the signs: Act early [Brochure]. National Center on Birth Defects and Developmental Disabilities. Atlanta, GA: Author. Wetherby, A. M., & Woods, J. (2002). Systematic observation of red flags for autism spectrum disorders in young children (SORF). Unpublished manual. Florida State University, Tallahassee, FL.
FURTHER INFORMATION Osterling, J. A., Dawson, G., & Munson, J. A. (2002). Early recognition of 1-year-old infants with autism spectrum disorder versus mental retardation. Development and Psychopathology, 14, 239–251. Wetherby, A. M., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C. (2004). Early indicators of autism spectrum disorders in the second year of life. Journal of Autism and Developmental Disorders, 34, 473–493.
PAUL G. LACAVA
REHABILITATION ACT OF 1973 The Rehabilitation Act of 1973 guarantees certain rights to individuals with disabilities. Most notably, Section 504 is internationally recognized as the foundational civilrights legislation for persons with disabilities, paving the way for further legislation for individuals with disabilities. See also Section 504 of the Rehabilitation Act of 1973. REFERENCE Pub. Law No. 93-112, 87 Stat. 394 (September 26, 1973), codified at 29 U.S.C. § 701 et seq.
TERRI COOPER SWANSON REINFORCER Reinforcement is a procedure that increases the likelihood of a behavior occurring again. A reinforcer is what is used to bring about that increase in behavior. Reinforcers can also be divided into primary and secondary types. Primary reinforcers are those things that are biologically necessary: food, water, and sex. All other reinforcers are secondary; however, there is some debate as to whether sensory reinforcers serve as primary or secondary reinforcers. Secondary reinforcers may be a tangible item, such as specific foods, toys, and movies, or social interaction. See also sensory integration; sensory processing. KATIE BASSITY
RESIDENTIAL FACILITY Students receive special education and related services in a facility where the students receive care and services 24 hours a day. Residential facilities can be public or privately owned. Students with visual impairments and hearing impairments represent the largest percentage of students receiving educational services in residential facilities. KATHERINE E. COOK 301
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RESIDENTIAL SUPPORTS As children grow into adults, families are faced with the complexities of how to best meet their child’s needs and provide support for an appropriate living arrangement. Given the complexity and heterogeneity of autism spectrum disorders (ASD), no single residential treatment approach is appropriate for everyone. Individuals with autism need to be assessed on their strengths and needs when planning for continuity of services. The initiative for most residential supports currently available came from parents and teachers concerned about the future of their children and students as they transitioned into adulthood. During the 1970s and 1980s, a number of autism-specific, community-based, residential programs were developed across the United States. In an effort to promote maximum integration into the community, most programs consisted of group homes in urban or suburban settings, with up to six clients in each (LaVigna, 1983; Wall, 1990). Some residential programs preferred smaller ratios of four per home, or garden apartments and town homes with two or three residents (CSAAC, 1995). Community-based programs often focus on sharing common goals of residents (Sloan & Schopler, 1977), optimizing development though independence and competence in various areas (Lettick, 1983), and facilitating individual independence (LaVigna, 1983). During the last two decades, larger residential group settings have proven beneficial as well. Larger facilities are able to provide increased opportunities for social interactions and allow for an increase of staff members to provide a variety of background skills including more flexible supervision of residents. Larger settings also provide natural subgroups for social and work participation around common interests and skills (Kay, 1990). Many community-based models include self-contained programs offering vocational and residential components, where residents interact with nondisabled neighbors in the community. Some sites offer educational and behavioral programming with a range of school, work, and agricultural environments, as well as individualized life skills instruction. The general model of these programs focuses on residents and staff working together to contribute to all aspects of the community. On-site activities emphasize visual, fine-motor and gross-motor skills in order to maximize each individual’s possibilities for success. When considering residential support programs, it is important for the family and the individual with ASD to consider the following. First, what are the facility’s mission and goals and do they match or meet your family’s needs? Every facility is going to have their own unique philosophy and it is important that it matches your family’s. Second, visit the residential site to determine if the program is the right fit. Taking a tour of the facility will help to learn what features the facility has to offer, will allow formal and informal conversations with staff, which will provide first-hand information as to how individuals are treated and cared for. Third, does the facility offer the type or level of support that is appropriate for your child? For individuals with ASD, having the appropriate environment, staff training, and understanding of the characteristics of each individual is extremely important. Finally, ask to talk with other families whose children live or work at the facility. This is a great way to find out about the quality of the facility and services that they provide. 302
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REFERENCES Community Services for Autistic Adults and Children (CSAAC). (1995). Adult residential program, adult vocational program [Brochure]. Rockville, MD: Author. Kay, B. R. (1990). Bittersweet Farms. Journal of Autism and Developmental Disorders, 20, 309– 322. LaVigna, G. W. (1983). The Jay Nolen Center: A community-based program. In E. Schopler & G. B. Mesibov (Eds.), Autism in adolescents and adults (pp. 381–410). New York: Plenum Press. Lettick, A. L. (1983). Benhaven. In E. Schopler & G. B. Mesibov (Eds.), Autism in adolescents and adults (pp. 355–379). New York: Plenum Press. Sloan, J. L., & Schopler, E. (1977). Some thoughts about developing programs for autistic adolescents. Journal of Pediatric Psychology, 2, 187–190. Wall, A. J. (1990). Group homes in North Carolina for children and adults with autism. Journal of Autism and Other Developmental Disorders, 20, 353–366.
STACEY L. BROOKENS RESOURCE ROOM During a student’s Individualized Education Program (IEP) meeting, the team determines the most appropriate placement for the student in the least restrictive environment (LRE). The resource room is one possible environment in which the student could spend part of the school day. The resource room can offer students extra instruction or support in deficit areas (such as homework help, organization, and test or homework modification). The amount of time a student spends in the resource room is determined by the IEP team according to the student’s individual needs. RASCHELLE THEOARRIS RESPITE CARE The autism spectrum includes children and adults with a variable range of complex issues. What is common to all families whose children have an autism spectrum disorder (ASD) is a comprehensive need for a myriad of services and supports. Near the top of the list for many families is the need for a break from the constant demands of parenting. This is often referred to as a need for respite. DEFINITION OF RESPITE The concept of respite first appeared in the late 1960s based on the belief that a child with special needs would be served best at home. Most often, respite is thought of as temporary, short-term care for an individual with special needs. According to United Cerebral Palsy (n.d.), ‘‘Respite . . . is a service in which temporary care is provided to children or adults with disabilities, or chronic or terminal illnesses, and to children at risk of abuse and neglect.’’ For purposes of discussion, the definition of respite will be broadened to include providing both temporary and ongoing support for children or adults with ASD within the context of their own home. SAMPLE JOB RESPONSIBILITIES The job responsibilities of a respite provider span a wide range of duties, dependent on the particular needs of the individual with ASD being supported. Duties change over time dependent on the developmental needs of a particular child or adult with ASD. 303
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Following are examples of duties with a younger child with ASD: (a) personal care and/or teaching of personal hygiene (bathing, face and hand washing, tooth brushing, dressing, (b) dispensing of medication, (c) food preparation, (d) implementing intervention strategies (e.g., Developmental Individual-Difference Relation-Based Intervention, Applied Behavior Analysis, Relationship Development Intervention, etc.), (e) transportation to therapy appointments, (f) engaging in prescribed activities between therapy sessions (e.g., speech, physical, occupational, vision therapy, etc.), (g) preparation of visual calendars and schedules, (h) regular communication with early intervention or school personnel, and (i) facilitating social interaction with peers. For an older school-aged child with ASD, although many of the just-mentioned duties are applicable, new responsibilities emerge as a child matures. Examples include: (a) facilitating self-care, (b) overseeing preparation for the school day (e.g., selecting clothes, preparing lunch, gathering necessary school materials together, etc.), (c) facilitating completion of daily homework, and (d) attendance at Individualized Education Program (IEP) meetings. As a child with ASD approaches their high school years, the focus of respite responsibilities shifts in the direction of supporting transition to adult life and greater independence. Examples include: (a) community skills (e.g., bus training, shopping, banking, etc.), (b) food preparation (table setting, kitchen clean-up, grocery lists, etc.), (c) use of public transportation, (d) seeking needed information and resources (e.g., via Internet, phone book, etc.), and (e) aid in developing social and recreational outlets. JOB DESCRIPTIONS A useful job description should include a statement that describes the philosophy underlying how a provider is expected to treat that person. For example, if supporting the person to learn self-advocacy is a high-priority goal, one would expect the worker to solicit input from the child or young adult whenever possible, and to show respect for whatever is communicated. Key job responsibilities and expectations need to be spelled out so that an applicant has a clear idea of what the job entails (Lieberman, 2005). QUALITIES TO SEEK IN A PROVIDER Prior to hiring an in-home respite worker, one must do some advance preparation. This entails thinking through specific duties that will be required. It also requires identifying desired personality qualities in a provider that will allow for a better match with the culture of the child or young adult’s home. For example, a spontaneous, right-brain type of person will not fit easily into a household that operates best with solid structure and routine. (For a more detailed explanation, see Lieberman. A Stranger Among Us, 2005, Ch. 2.) DETERMINING BOTTOM-LINE ISSUES FOR HIRING When hiring a respite provider, each family must decide what the essential bottomline issues are in order to rule out inappropriate applicants. Following is a sample list of bottom-line issues that might be used for screening: ¥ Comfort relating to people with ASD or other neurological differences ¥ Use of a reliable car, good driving record, and current driver’s license ¥ Nonsmoker
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SPECIFIC AREAS TO EXPLORE IN A FACE-TO-FACE INTERVIEW It is helpful to find somebody who has been exposed to people with ASD or other kinds of disabilities. Beyond that, there are other important areas to explore in-depth in a face-to-face interview. Self-Care and Emotional Stability Working with a child or young adult with ASD requires, at the very least, calmness, a great deal of patience, and personal maturity. One way to assess whether a candidate possesses these qualities is to ask questions that explore self-care and emotional stability. ‘‘The ideal candidate should ‘have a life’ outside of work . . . you don’t want someone who is looking to meet the bulk of her emotional needs in your household . . . You are looking for answers that demonstrate the ability to maintain control when confronted with a child’s challenging behaviors’’ (Lieberman, 2005, pp. 80–81). A good candidate should have a regular and healthy routine for managing stress, whether a regular fitness activity, a recreational sport, yoga or dance, prayer, or meditation practice. People who practice healthy stress management in their own lives are better equipped to handle difficult behaviors exhibited by children or young adults under stress. Relationship to Drugs and Alcohol It is definitely pertinent to explore an applicant’s relationship with drugs or alcohol. Most people who are in active recovery from drugs and/or alcohol are likely to be forthcoming in sharing the amount of time in recovery. A good rule of thumb is for someone to be in active recovery from addiction for at least 1 year before considering that person as a viable candidate. On the other hand, don’t automatically rule out someone with a history of addiction. Those who overcome this challenge in their lives can exhibit strength of character that serves them well in supporting a child or young adult with ASD. A word of caution: If an applicant with a history of addiction claims to no longer use a certain drug but still has an occasional drink, be prepared to question that person in greater detail. Addicts in recovery must stay away from all drugs if they truly intend to live a clean and sober lifestyle. Comfort with Expressing Emotion Be cautious of someone who claims never to get angry. Nobody can avoid some degree of internal agitation just from living in today’s fast-paced society. Those feelings must be expressed periodically to avoid unpredictable ‘‘explosions.’’ Working with a child or young adult with behavioral challenges can tax a provider’s emotions. It would therefore be important to assess how comfortable that applicant is with experiencing a full range of emotions in a healthy way. Ability to Set Limits A quality provider must be comfortable with setting limits. Someone who says ‘‘yes’’ to doing things she is not comfortable doing is at risk for burning out or building up 305
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resentment. It works best when that person has bottom lines about what she will or won’t do. Setting limits is also important in providing support to a child or young adult with ASD. Behaviors may arise that require a calm, but firm response that helps that child or young adult to learn appropriate boundaries. Examples of behaviors might include such things as invading someone’s private space, grabbing something out of another person’s hand, monopolizing a conversation without noticing a lack of interest on the part of the listener, etc. Attitudes Toward Discipline How a candidate was disciplined as a child would have a direct effect on how he handles challenging situations with the child or young adults he is supporting. If someone has been physically abused, it is essential that a candidate can demonstrate emotional work that has been done to counteract the negative effects of being abused. Explore the candidate’s ideas about what discipline is and how it should be implemented. Discipline is teaching desired behavior, that is, helping a child or young adult to understand what is expected. It is distinctly different from punishment, which is defined as reacting, based on what that person has done wrong. It often takes the form of venting anger in response to challenging behavior. Punishment does not teach desired behavior. In short, look for candidates who clearly understand the difference between discipline and punishment. Closely aligned with investigating attitudes toward discipline is how an applicant interprets the challenging behaviors exhibited by children and young adults with ASD. One way this can be accomplished is to pose a challenging situation and ask that person how she would handle it. How an applicant answers is a good indicator of whether she grasps the neurological basis of behavior in this population. Avoid candidates who automatically assign negative intent to difficult behaviors. This kind of attitude is rarely helpful when supporting people with ASD, and in fact, can be harmful. Positive Behavioral Support Positive behavioral support is a more appropriate response to challenging behaviors. This involves seeking to understand what a child or young adult may be trying to say through their behavior. Howard and Pitonyak (2005), in an article entitled ‘‘All Behavior Is Meaningful,’’ say: Difficult behaviors result from unmet needs . . . Supporting a person with difficult behaviors requires us to get to know the person as a human being influenced by a complex personal history. While it is tempting to look for a quick fix, which usually means attacking the person’s behavior to make it go away, intervening in a person’s life without understanding something about the life he or she is living is disrespectful and counterproductive. (p. 3)
Listen for indications that the candidate is able to avoid taking challenging behavior personally and screen out candidates who seem concerned with enforcing compliance. The best applicant will demonstrate an understanding of the many factors to take into consideration when trying to positively address difficult behavior, including the person’s health, the sensory environment, changes in circumstances, and so forth. 306
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Utilizing respite providers in the home is often overlooked as an option. Hiring a provider is a complex and time-consuming process fraught with uncertainty. But with careful preparation, a clear job description, upholding bottom lines, and a thoughtful in-depth interview, a quality provider can enhance the life of a child or young adult with ASD, while providing much needed respite to family members. REFERENCES Howard, E., & Pitonyak, D. (2005). All behavior is meaningful—magic can happen! ASP Cares (June), 3. Lieberman, L. (2005). A stranger among us: Hiring in-home support for child with autism spectrum disorder or other neurological differences. Shawnee Mission, KS: Autism Asperger Publishing Company. United Cerebral Palsy. (n.d.). What is respite care? Retrieved December 14, 2006, from www. ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/2106.
LISA ACKERSON LIEBERMAN RESPONDENT CONDITIONING Respondent conditioning, also referred to as classical conditioning, is a type of learning within the behavioral school of thought. It is the process of pairing a neutral stimulus, something that inspires no response from the individual, with something that instigates an automatic reaction from the individual, an unconditioned stimulus. This pairing takes place until the neutral stimulus causes the same reaction as the unconditioned stimulus, without the presence of the unconditioned stimulus. The formerly neutral stimulus is then referred to as a conditioned stimulus. This process was originally referred to as classical conditioning by Ivan Pavlov, in his famous study with dogs. See also antecedent-behavior-consequence analysis; applied behavior analysis; behavior modification. KATIE BASSITY RESPONSE COST Response cost falls into the category of punishment. In a response-cost system, a person is denied a certain piece of or the whole reinforcement for each behavior they perform that is deemed inappropriate. As in the definition of punishment, a procedure is not a response cost if after the reinforcement is taken away, the behavior does not decrease (Cooper, Heron, & Heward, 1987; Azrin & Holz, 1966). Response cost has been successful in token-based treatment programs in a variety of settings, including clinics, homes, hospitals, and schools (Kazdin, 1972). Because response cost utilizes the removal of positive reinforcement, positive reinforcement must be available and the reinforcers must be effective (Alberto & Troutman, 1999). Additionally, reinforcers must have the ability to be withdrawn (which is why edible reinforcers do not typically work). Fines for speeding and loss of tokens for talking out of turn are examples of response-cost procedures. See also applied behavior analysis; token economy. REFERENCES Alberto, P. A., & Troutman, A. C. (1999). Applied behavior analysis for teachers. Upper Saddle River, NJ: Merrill.
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RESPONSE LATENCY Azrin, N. H., & Holz, W. C. (1966). Punishment. In W. A. Honig (Ed.), Operant behavior: Areas of research and application. New York: Appleton-Century-Crofts. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice-Hall. Kazdin, A. E. (1972). Response cost: The removal of conditioned reinforcers for therapeutic change. Behavior Therapy, 3, 533–546.
TARA MIHOK
AND JESSICA
KATE PETERS
RESPONSE LATENCY Response latency is the amount of time between a given command and the student’s response. This measure may be used for a variety of purposes, including as a check for mastery and/or fluency. For example, a teacher asks a student to name an animal and immediately begins to count silently. If the student responds when the teacher reaches the count of five, the response latency for this situation would be 5 seconds. KATIE BASSITY
RESTRICTED INTEREST These topical interests can become all consuming to the exclusion of others. Often, individuals on the autism spectrum will only talk or read about their interest, not participate in it. Restricted interests is one of the characteristics that defines Asperger’s disorder as ‘‘restricted patterns of interest that is abnormal in intensity or focus’’ (APA, 2000). A survey by Online Asperger Syndrome Information and Support (OASIS) found the top five specialized interest topics to be: peer-appropriate fads or interests; video or computer games; works of art, movies, fictional books, or television programs; and computers (Bashe & Kirby, 2001, p. 39). Sometimes, the restricted interests lean toward the strange or odd. These have included interest in: bleach bottles, alarms and alarm systems, lawn mowers, organs and organ music, road signs, maps, clocks, time, directions (north, south, east, west), telephone books, game shows, and insects (Bashe & Kirby, 2001, p. 40). REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Bashe, P. R., & Kirby, B. L. (2001). The OASIS guide to Asperger syndrome, advice, support, insights and inspiration. New York: Crown Publishers.
ANN PILEWSKIE
RETROSPECTIVE VIDEO ANALYSIS (RVA) Retrospective video analysis (RVA) uses home videos for documentation of a child’s development. RVA has been used as an option for assessing very early periods in development. RVA can help identify behaviors that distinguish between autism and other developmental disabilities in children as young as 8 months of age. JAN L. KLEIN 308
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RETT’S DISORDER Rett’s disorder is currently included within Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000) classifications of mental disorders and listed as a pervasive developmental disorder. However there is some controversy around whether it should be classified instead as a neurological disorder (e.g., Tsai, 1992). Rett’s disorder is characterized according to DSM-IV-TR (APA, 2000) as follows: There must be the presence of normal prenatal and perinatal development, normal psychomotor development through the first 5 months after birth, and normal head circumference at birth. Then, after a period of normal development there should be onset of all of the following: (a) deceleration of head growth between ages 5 and 48 months, (b) loss of previously acquired purposeful hand skills between ages 5 and 50 months with the subsequent development of stereotyped hand movements (e.g., hand wringing or hand washing), (c) loss of social engagement early in the course (although social interaction often develops later), (d) appearance of poorly coordinated gait or trunk movements, and (e) severely impaired expressive and receptive language development with severe psychomotor retardation. Other criteria not required for diagnosis but commonly observed include breathing dysfunctions including hyperventilation or apnea, electroencephalogram (EEG) abnormalities including slowing of normal electrical patterns, appearance of epileptiform patterns, and reduction in REM sleep, seizures, muscle rigidity or spasticity, scoliosis, teeth grinding, and small feet (Schilling, 1997). Diagnosis of Rett’s disorder is usually made between 6 and 24 months of age, and is believed to be present primarily in girls, with few confirmed male cases recorded (Hagberg, 1985), although the possibility remains of undiagnosed male cases. Recent research has indicated the possibility of a gene for Rett’s disorder, MECP2 (Amir et al., 1999), with one reported male with the gene mutation who only survived to 1 year of age (Meloni et al., 2000). It is possible that the fatality of the gene mutation in males is what accounts for no known male cases of Rett’s disorder. Although there is now a known genetic mutation, diagnosis is still predominantly based on the presence or absence of behavioral and clinical criteria. Rett’s disorder is a rare condition thought to occur in about 1 in every 10,000– 15,000 live births (Glasson, Thomson, Fyfe, Leonard, Bower, et al., 1998; Deb, 1998). Following a relatively short period of normal development, there is a sudden regression with irreversible effects leading to a severe developmental disorder affecting cognitive, motor, communication, and social functioning (Perry, Sarlo-McGarvey, & Factor, 1992). Many of the early characteristics present similarly to autism, and Witt-Engerstrom and Gillberg (1987) report that around 78 percent of girls with Rett’s disorder have been previously misdiagnosed as having infantile autism. In fact, the inclusion of Rett’s disorder in the pervasive developmental disorders in DSM-IV-TR (2000) was in part to try and reduce the number of incorrect autism diagnoses (Volkmar & Lord, 1998). Van Acker (1997) argues that there are certain characteristics that distinguish between Rett’s disorder and autism in young girls, and that assessing motor development could be an important means for making accurate differential diagnosis. Specifically, in Rett’s disorder both communication and motor skills regress simultaneously, whereas in autism regression, if it occurs, tends to be in communication alone. Van Acker (1997) goes on to suggest that assessment in other areas should include: 309
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(a) respiratory patterns, (b) ability and speed of movements, (c) purposeful hand movements, (d) degree and type of stereotypical movements, (e) ability to acquire new skills, (f) physical development, and (g) overall developmental milestones. However, he also contends that due to the developmental nature of the disorder any diagnosis of Rett’s disorder should be tentative until between ages 3 and 5 years. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Amir, R. E., Van der Veyver, I. B., Wan, M., Tran, C. Q., Franke, U., & Zoghbi, H. Y. (1999). Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG binding protein 2. Nature Genetics, 32, 185–188. Deb, S. (1998). Self injurious behaviour as part of the genetic syndromes. British Journal of Psychiatry, 172, 385–388. Glasson, E. J., Thomson, M. R., Fyfe, S., Leonard, S., Bower, C., Rousham, E., et al. (1998). Diagnosis of Rett syndrome: Can a radiograph help? Developmental Medicine and Child Neurology, 40, 737–742. Hagberg, B. (1985). Rett’s syndrome: Prevalence and impact on progressive severe mental retardation in girls. Acta Pediatrica Scandanavica, 74, 405–408. Meloni, I., Bruttini, M., Longon, I., Mari, F., Rizzolio, F., D’Adamo, P., et al. (2000). A mutation in the Rett syndrome gene, MECP2, causes X-linked mental retardation and progressive spasticity in males. American Journal of Human Genetics, 67, 982–985. Perry, A., Sarlo-McGarvey, N., & Factor, D.C. (1992). Stress and family functioning in parents of girls with Rett syndrome. Journal of Autism and Developmental Disorders, 22, 235–248. Schilling, D. (1997). Our Rett syndrome page. Retrieved August 17, 2005, from http://pages. prodigy.com/DebbieSchilling. Tsai, L. Y. (1992). Is Rett syndrome a subtype of pervasive developmental disorders? Journal of Autism and Developmental Disorders, 22, 551–561. Van Acker, R. (1997). Rett syndrome: A pervasive developmental disorder. In D. J. Cohen & F. R. Volkmar (Eds.), Handbook of autism and pervasive developmental disorders (2nd ed.) (pp. 60–93). New York: Wiley & Sons. Volkmar, F. R., & Lord, C. (1998). Diagnosis and definition of autism and other pervasive developmental disorders (pp. 1–31). In F. R. Volkmar (Ed.), Autism and pervasive developmental disorders. Cambridge: Cambridge University Press. Witt-Engerstrom, I., & Gillberg, C. (1987). Rett syndrome in Sweden. Journal of Autism and Developmental Disorders, 17, 149–150.
FIONA J. SCOTT
RETT’S DISORDER–DIAGNOSTIC CRITERIA FOR 299.80 RETT’S DISORDER According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000), the diagnostic criteria for Rett’s disorder include all of the following: (a) apparent normal prenatal and perinatal development, (b) apparent normal psychomotor development through the first 5 months after birth, and (c) normal head circumference at birth. Additional criteria include all of the following with onset following the period of normal development: (a) deceleration of head growth between ages 5 months and 48 months, (b) loss of previously acquired purposeful hand skills between ages 5 months and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing), (c) loss of social engagement early in the course (although often social interaction develops later), (d) appearance of 310
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poorly coordinated gait or trunk movements, and (e) severely impaired expressive and receptive language development with severe psychomotor retardation. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
JEANNE HOLVERSTOTT RIMLAND, BERNARD Bernard Rimland (1928–2006) received his PhD in experimental psychology and research design from Pennsylvania State University in 1953. A few years later, his son Mark was born. It was Mark, who was diagnosed with early infantile autism, who sparked his father’s interest in better understanding the rare disorder. Much of Dr. Rimland’s work has been controversial. Specifically, Dr. Rimland was one of the first professionals in the field to speak out against the ‘‘refrigerator mother’’ theory. In the 1990s, he was one of the first to call attention to the rise in autism and the use of vaccinations containing thimerosol. Dr. Rimland founded the Autism Society of America in 1965 and the Autism Research Institute in 1967, where he carried out his work until his death. TERRI COOPER SWANSON RUMINATION SYNDROME Rumination is the chewing of food. In rumination syndrome, a person chews and swallows food and then regurgitates it back to the mouth to chew and swallow again. Rumination may be voluntary or involuntary. In infants, rumination may begin at the age of 3–6 months and usually resolves on its own. In adults, the disorder may accompany physical and/or psychological disorders. Contrary to thought, the regurgitated material does not taste bitter or sour. Severe health consequences can develop if the disorder is not treated. These include bad breath, tooth enamel damage, dehydration, weight loss, pneumonia, and even death. LYNN DUDEK
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S SCALES OF INDEPENDENT BEHAVIOR–REVISED (SIB-R) The Scales of Independent Behavior–Revised (SIB-R; Bruininks, Woodcock, Weatherman, & Hill, 1996) is a standardized measure of adaptive behavior across 7 skill clusters (e.g., Personal Living Skills) and 22 subscales (e.g., eating and meal preparation) and includes a measure of the impact of problematic behavior on adaptive functioning. Adaptive behavior generally refers to those skills or skill sets associated with personal, vocational, and social self-sufficiency in real-life situations (Klin, Saulnier, Tsatsanis, & Volkmar, 2005). The SIB-R was normed on 2,100 individuals across 15 states with these norms extending beyond adolescence (from 3 months to 80+ years of age). The SIB-R is generally regarded as a valid and reliable assessment of adaptive functioning and, when properly administered, can be very useful in individual evaluation, Individual Education Plan development, and functional transition planning. See also individualized transition plan; standardization; transition planning. REFERENCES Bruininks, R. H., Woodcock, R. W., Weatherman, R. F., & Hill, B. K. (1996). The scales of independent behavior–revised. Chicago: Riverside Publishing Company. Klin, A., Saulnier, C., Tsatsanis, K., & Volkmar, F. (2005). Clinical evaluation in autism spectrum disorders: Psychological assessment within a transdisciplinary framework. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 772–798). New York: Wiley & Sons.
PETER GERHARDT SCERTS MODEL The Social Communication, Emotional Regulation, and Transactional Support or the SCERTS Model is a comprehensive educational approach and multidisciplinary framework designed to enhance the core challenges, communication, and socialemotional abilities faced by children with autism spectrum disorders (ASD) and related disabilities (Prizant, Wetherby, Rubin, & Laurent, 2003). The SCERTS Model was collaborated and developed by a group of interdisciplinary professionals. This model was derived from a theoretical- as well as a research-based foundation on communication and social-emotional development in children with ASD. It was developed to address the critical need identified by professionals and parents for a
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comprehensive multidisciplinary team model for children with ASD (Prizant, Wetherby, Rubin, Laurent, & Rydell, 2006). In addition, the model was designed to have broad application in educational settings, clinical settings, and in everyday activities at home and in the community (Prizant, Wetherby, Rubin, Laurent, & Rydell, 2002). Thus far, the model is not a treatment approach or methodology; instead, it is a framework that provides guidelines for implementing a comprehensive therapeutic and educational plan. Furthermore, although the model was designed for children with ASD, many other children with challenges in social communication and emotional regulation would potentially benefit from the SCERTS Model (The SCERTS Model, 2006). CORE VALUES OF THE SCERTS MODEL The SCERTS Model is grounded in explicitly stated core values and principles that guide educational and treatment efforts (Prizant et al., 2006). Following are the statements of core values and guiding principles (The SCERTS Model, 2006, p. 18): 1. The development of spontaneous, functional communication abilities and emotional regulatory capacities are of the highest priority in educational and treatment efforts. 2. Principles and research on child development frame assessment and educational efforts. Goals and activities are developmentally appropriate and functional, relative to a child’s adaptive abilities and the necessary skills for maximizing enjoyment, success, and independence in daily experiences. 3. All domains of a child’s development (e.g., communicative, social-emotional, cognitive, and motor) are interrelated and interdependent. Assessment and educational efforts must address these relationships. 4. All behavior is viewed as purposeful. Functions of behavior may include communication, emotional regulation, and engagement in adaptive skills. For children who display unconventional or problem behaviors, there is an emphasis on determining the function of the behavior and supporting the development of more appropriate ways to accomplish those functions. 5. A child’s unique learning profile of strengths and weaknesses plays a critical role in determining appropriate accommodations for facilitating competence in the domains of socialcommunication and emotional regulation. 6. Natural routines across home, school, and community environments provide the educational and treatment contexts for learning, and for the development of positive relationships. Progress is measured in reference to increasing competence and active participation in daily experiences and routines. 7. It is the primary responsibility of professionals to establish positive relationships with children and with family members. All children and family members are treated with dignity and respect. 8. Family members are considered experts about their child. Assessment and educational efforts are viewed as collaborative processes with family members, and principles of familycentered practice are advocated to build consensus with the family and enhance the collaborative process.
ESSENTIAL CHARACTERISTICS OF THE SCERTS MODEL There are three essential characteristics underlying the SCERTS Model identified by the model collaborators (Prizant et al., 2006). First, the model is systematic and semistructured but also flexible. In contrast to either adult-directed instructions or facilitative approaches, the model attempts to find the balance and work in the middle 314
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Table 6. An Overview of Ultimate Goals of the SCERTS Model Social Communication
Emotional Regulation
Transactional Support
Enhance capacities for joint attention Enhance capacities for symbolic behavior
Enhance capacities for self-regulation Enhance capacities for mutual regulation Enhance capacity to recover from dysregulation
Educational and learning support Interpersonal supports Family support Support among professionals
ground. Second, instead of solely focusing on training skills, the model addresses underlying capacities as well as supports the development of functional skills. The primary goals in the model are to develop educational, self-help and independent living skills. Last, the model is flexible enough to incorporate practices from a variety of approaches and teaching strategies, such as augmentative communication, relaxation techniques, and sensory supports. However, it should be noted that only those that support social communication and emotional regulation, and that are philosophically consistent with the core values and guiding principles of the model are considered compatible with practice in the model (Prizant et al., 2006). CORE COMPONENTS OF THE SCERTS MODEL The acronym SCERTS refers to Social Communication (SC), Emotional Regulation (ER), and Transactional Support (TS). These are the core components of the SCERTS Model as well as the primary developmental dimensions that Prizant and his colleagues (2002) believe should be prioritized in a program designed to support the development of children with ASD and their families (see Table 6). SOCIAL COMMUNICATION (SC) The Social Communication (SC) component of the SCERTS Model addresses the over-riding goals of helping a child to be a confident, increasingly proficient, successful, and active communicator and participant in social activities (Prizant et al., 2006). In addressing this goal, the model collaborators believed that children must acquire capacities in two major areas of functioning: joint attention and symbolic behavior (Prizant et al., 2006). They further identified those two areas as foundations of social communication based on the following two reasons. First, children become more capable in sharing attention and emotion as well as expressing intentions in reciprocal interactions when their capacities of joint attention increase. Second, children develop more sophisticated and abstract means to communicate and play with others when their capacities of symbolic behavior increase. The ultimate goal targeted in the SC component of the SCERTS Model is to support a child in developing his or her foundational capacities in joint attention and symbolic behavior that support communicative and social competence and emotional well-being. It is believed that with these capacities, children are more likely to find satisfaction and even great joy in being with, relating to, and learning from others (Prizant et al., 2006). 315
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EMOTIONAL REGULATION (ER) The Emotional Regulation (ER) component of the SCERTS Model focuses on supporting a child’s ability to regulate emotional arousal (Prizant et al., 2006). The model collaborators believed that emotional regulatory capacities enable a child (a) to seek assistance and/or respond to others’ attempts to provide support for emotional regulation (referred to as mutual regulation), (b) to independently remain organized (referred to as self-regulation), and (c) to recover from states of emotional meltdown (referred to as recovery from dysregulation). Furthermore, they believed the child will be optimally available for learning once he or she has those emotional regulatory capacities and skills. Therefore, the ultimate goal of the ER component of the SCERTS Model is to support a child in adapting to and coping with the daily challenges he or she will face in maintaining optimal states of arousal most conducive to learning, relating to others, and experiencing positive emotions (Prizant et al., 2006). TRANSACTIONAL SUPPORT (TS) Transactional Support (TS) is the third and concluding core component of the SCERTS Model. Transactional support includes: (a) interpersonal supports, (b) learning and educational supports, (c) support to families, and (d) support among professionals and other service providers. Furthermore, the model collaborators emphasized that transactional support needs to be infused across different activities and social partners since meaningful learning occurs only within the social context of everyday activities (Prizant et al., 2006). Thus far, the ultimate goals of the TS component of the SCERTS Model are: (a) to develop and provide the necessary learning and educational supports for a child, (b) to coordinate efforts among all partners in using interpersonal supports most conducive to social communication and emotional regulation, (c) to provide learning experiences with other children leading to the development of meaningful peer relationships, and (d) to support families with educational resources, direct strategies, and emotional support (Prizant et al., 2006). THE MEANFUL ACTIVITIES (MA) & PURPOSAL ACTIVITIES (PA) APPROACH In light of designing individualized learning activities and modification of everyday activities to be both motivating and functional for a child, the SCERTS Model applies the Meanful Activities (MA) & Purposal Activities (PA) approach, which refers to the use of meaningful activities and purposeful activities (Prizant et al., 2006). TYPES OF ACTIVITIES In the MA & PA approach, three types of activities are included: (a) goal-directed activities, (b) cooperative turn-taking games, and (c) theme-oriented activities (Prizant et al., 2006). Goal-Directed Activities Goal-directed activities are the activities that have a sequence of steps with a clear and easily perceived end goal, such as making a sandwich, doing puzzles, and so on. They typically follow a logical sequence to conclusion. The primary function of engaging in such activities is to reach the end goal. 316
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Cooperative Turn-Taking Games The primary goal of cooperative turn-taking games is in the success of social reciprocity, turn-taking, and mutual enjoyment derived from such shared activities. Such activities do not necessarily have clear end goals in the same sense as goal-directed activities. Rather, the success is measured by qualities like shared emotional experience, cooperation, and social reciprocity. Theme-Oriented Activities Theme-oriented activities are organized around and may have multiple embedded components. Those components may be related to functional skills in daily routine such as going to school or visiting a doctor that involve sequences of smaller events that are organized in a logical manner. Such activities may be most appropriate for children at the more advanced language level. GUIDELINES FOR IMPLEMENTING ACTIVITIES In the training manual of the SCERTS Model (pp. 18–19), the model collaborators provided guidelines for (a) implementing activities within natural settings and routines according to the MA & PA approach, (b) individualizing educational programming to meet the unique needs of each child with ASD, and (c) providing the transactional supports necessary to best support a child with ASD while implementing the program. They are as follows: 1. 2. 3. 4.
Identify developmentally appropriate goals and outcomes. Identify at least three activities that are meaningful, purposeful, and motivational. Infuse goals across at least three activities across settings. Identify/select optimal levels of social complexity in activities based on the child’s learning need and strengths. 5. Within Steps 2–4, identify the sequential skills that are embedded into each activity. 6. Identify appropriate transactional supports for social communication and emotional regulation. 7. One-to-one or small-group planned activity routines may be provided as opportunities for increased practice or rehearsal of skills that require more instructional opportunities.
In summary, the MA & PA approach of the SCERTS Model is defined by the following six criteria made by the model collaborators. First of all, activities should make sense relative to a child’s daily life activities and routines. That is, activities that occur across settings or that can readily be scheduled to occur are designed and/or modified to support the learning of functional skills. Second, activities should be selected on the basis of a child’s interests, motivations, and strengths. If an activity is not inherently motivating, efforts should be made to infuse the activity with supports, topics, information, or qualities that support the child’s learning and emotional regulation. Third, activities should be designed and/or transactional supports should be used to provide a child with a clear sense of the goal of the activity, the logical sequence of the activity, the steps within the activity, and clear indicators of when the activity is completed. Fourth, activities should provide a child with multiple and frequent opportunities for initiating communication, making choices, repairing breakdowns, and responding to the communication of partners. Fifth, activities should have an understandable structure for social participation and turn-ranking. Last but not least, whenever possible, activities should 317
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involve the participation of children who provide good language and social models as well as to support the development of positive relationships. See also augmentative and alternative communication; play-oriented therapies; social skills training; symbolic thought. REFERENCES Prizant, B. M., Wetherby, A. M., Rubin, E., & Laurent, A. C. (2003). The SCERTS Model: A transactional, family-centered approach to enhancing communication and socioemotional abilities of children with autism spectrum disorder. Infants and Young Children, 16, 296–316. Prizant, B. M., Wetherby, A. M., Rubin, E., Laurent, A. C., & Rydell, P. J. (2002). The SCERTS Model: Enhancing communication and socioemotional abilities of children with autism spectrum disorder. Jenison Autism Journal, 14, 2–19. Prizant, B. M., Wetherby, A. M., Rubin, E., Laurent, A. C., & Rydell, P. J. (2006). The SCERTS Model: A comprehensive educational approach for children with autism spectrum disorders. Baltimore: Brookes Publishing Co. The SCERTS Model (2006). Introduction to the SCERTS Model. Retrieved December 10, 2006, from http://www.scerts.com/frequently_asked_questions.htm.
KAI-CHIEN TIEN SCHEDULE OF REINFORCEMENT Many different schedules of reinforcement may be applied to a person’s behavior. Schedules of reinforcement are rules used to provide reinforcement for a target behavior (Skinner, 1953). Continuous schedules of reinforcement provide reinforcement for each instance of the behavior. Interval schedules of reinforcement require a minimum amount of time that must pass between reinforced responses (Ferster & Skinner, 1957). Interval schedules may have a consistent time period (fixed interval schedule) or a variable time period between reinforcers (variable interval schedule). Ratio schedules require a specific number of responses before a reinforced response (Ferster & Skinner, 1957). The number of responses may be fixed from one reinforcer to the next (fixed ratio schedule) or it may vary between reinforcers (variable ratio schedule). In extinction, reinforcement of a response is stopped, leading to a decline in the response (Zeiler, 1977). Finally, an intermittent schedule of reinforcement means that reinforcement follows at any rate that is lower than a continuous rate (Cooper, Heron, & Heward, 1996). Different schedules of reinforcement lead to different patterns of response. REFERENCES Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall. Ferster, C. B., & Skinner, B. F. (1957). Schedules of reinforcement. New York: Appleton-Century-Crofts. Skinner, B. F. (1953). Science and human behavior. New York: Macmillan. Zeiler, M. (1977). Schedules of reinforcement: The controlling variables. In W. K. Honig & J. E. R. Staddon (Eds.), Handbook of operant behavior. Englewood Cliffs, NJ: Prentice Hall.
JESSICA KATE PETERS
AND
TARA MIHOK
SCHIZOPHRENIA According to the Diagnostic and Statistical Manual of Mental Disorders (DSMIV-TR; APA, 2000), schizophrenia is a mental disorder that lasts for at least 6 months and includes at least 1 month of active symptoms. 318
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SYMPTOMS Active symptoms include: ¥ Delusions, which are disturbances of thinking involving misinterpretation of perceptions or experiences. Their content include a variety of topics, such as persecutory (e.g., the person believes that he or she is being spied on or followed), religious, referential (e.g., the person believes that passages from books, song lyrics, or certain gestures or comments from people are specifically directed to him or her), or somatic or grandiose (e.g., the person believes that he possess a special ability, beauty, or is an important person). ¥ Hallucinations, which are sensory perceptions but without the external stimulus that triggers them. They can be auditory, which are the most frequent, (e.g., hearing voices external to themselves), visual (e.g., seeing people, lights, animals that others can’t see), olfactory, gustatory, and tactile. ¥ Disorganized speech, whereby the person switches from one topic to another, gives answers that are only minimally or not at all related to the question. In some cases the speech is so unorganized that it is nearly incomprehensible. ¥ Disorganized or catatonic motor behavior, which can be manifested in many ways, from decreased reactions to the environment to unpredictable agitation. Difficulties involve doing daily activities such as maintaining proper hygiene or dressing in unusual ways. ¥ Negative symptoms, which include poor eye contact, reduced body language, and an unexpressive face. Also, speech is brief and laconic, and the person is unable to initiate and persist in goal-directed activities.
SUBTYPES OF SCHIZOPHRENIA There are five subtypes of schizophrenia: ¥ Paranoid. Characterized by frequent preoccupation with one or more delusions or frequent auditory hallucinations. ¥ Disorganized. Characterized by disorganized speech and behavior and inappropriate or flat affect. ¥ Catatonic. Characterized by motoric immobility, trance or excessive motor activity, extreme negativism, mutism or echolalia, and stereotyped movements. ¥ Undifferentiated. This type of schizophrenia presents the core symptoms but does not meet the criteria for paranoid, disorganized, or catatonic types. ¥ Residual. Refers to instances when there has been at least one episode of schizophrenia but the actual clinical picture is without the core symptoms. Characterized by the presence of flat affect, poor speech, and attenuated symptoms of odd beliefs or unusual perceptual experiences.
This disorder involves dysfunction in one or more major areas of functioning such as interpersonal relations, work, education, or self-care. The dysfunction is clearly below the level that the person had achieved before the onset of the disorder. ONSET AND COURSE The onset of schizophrenia typically occurs between the late teens and mid-30s; it is rare prior to adolescence. The age of onset for men is between 18 and 25 years and for women is between 25 and the mid-30s. The outbreak may be sudden; however, the majority of individuals manifest some early signs that develop slowly and gradually such as deterioration in hygiene, outbursts of anger, loss of interest in work or school, or social detachment. First-degree biological relatives of individuals with schizophrenia are 10 times more at risk for developing schizophrenia than the general population. 319
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The course and outcome of schizophrenia are variable. Some patients will exhibit remissions, whereas others chronically show the symptoms. Complete remission is uncommon. PREVALENCE Schizophrenia has been identified all around the world, and prevalence among adults is often reported to be 0.5–1.5 percent. Annual incidences range from 0.5 to 5.0 per 10,000. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
FURTHER INFORMATION American Academy of Child and Adolescent Psychiatry. (1997). Practice parameters for the assessment and treatment of children and adolescents with schizophrenia. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 177–193. Mueser, K. T., & McGurk, S. R. (2004). Schizophrenia. The Lancet, 363, 2063–2072. National Alliance for the Mentally Ill (NAMI): www.nami.org. National Alliance for Research on Schizophrenia and Depression: www.narsad.org. National Institute of Mental Health: www.nimh.nih.gov.
SUSANA BERNAD-RIPOLL SCHOOL FUNCTION ASSESSMENT The School Function Assessment (SFA; Costerl, Deeney, Haltiwanger, & Haley, 1998) looks at functional tasks throughout a school day (kindergarten through grade 6) and the level of supported participation needed by the student. This questionnaire can be utilized to assist with collaborative program planning by school teams. The SFA is a tool that examines how much support is needed by the student so they can participate to the fullest extent possible and includes the adaptations will be needed to ensure that participation can happen. REFERENCE Costerl, W., Deeney, T., Haltiwanger, J., & Haley, S. (1998). School function assessment. Austin, TX: Pro-Ed.
BROOKE YOUNG SCHOPLER, ERIC Eric Schopler (1927–2006) received his PhD from the University of Chicago in Clinical Psychology and then joined the faculty at the University of North Carolina at Chapel Hill (UNC). It was at UNC in 1966 that Dr. Schopler furthered his dissertation research into what is now known as the TEACCH program (Treatment and Education of Autistic and Related Communication-Handicapped Children). Dr. Schopler wrote over 400 books and articles and received numerous awards for his work. The TEACCH program is recognized throughout the world. Dr. Schopler carried out his work at Division TEACCH until his death. See also structured teaching. TERRI COOPER SWANSON 320
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SCREENING According to Ireton (1992), ‘‘the term screening technically refers to the process of selecting out for further study those high-risk individuals whose apparent problems might require special attention or intervention’’ (p. 487). Hooper and Umansky (2004) also stated that screening is a procedure used to identify infants and preschoolers who may be in need of a more comprehensive evaluation. To be more specific, screening is a quick process to identify young children who may be at risk for a disability or developmental problem or who may need further assessments for diagnosis. Screening is usually conducted through tests, checklists, or observations. In the process of screening, the professionals often depend on parents or others who know the child well to provide information on the child (e.g., sleeping patterns, eating behaviors, and so on). See also Autism Screening Questionnaire; Checklist for Autism in Toddlers; Child Behavior Checklist for Ages 11=2–5; Childhood Autism Rating Scale; Modified Checklist for Autism in Toddlers. REFERENCES Hooper, S. R., & Umansky, W. (2004). Young children with special needs. Upper Saddle River, NJ: Pearson Education. Ireton, H. (1992). Child development inventories. Minneapolis, MN: Behavior Science Systems.
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SCREENING TOOL FOR AUTISM IN TWO-YEAR-OLDS (STAT) The Screening Tool for Autism in Two-Year-Olds (STAT; Stone & Ousley, 1997) uses 12 interactive questions to assess an array of domains including play, communication, and imitation. The purpose of the STAT is to assist in the early identification and intervention of children with autism. To complete administration of the STAT, evaluators need a 20–30 minute semistructured play situation. The STAT is currently only given out at training workshops, as Vanderbilt University continues to study the validity of the administration. See also screening. REFERENCE Stone, W. L., & Ousley, O. Y. (1997). STAT Manual Screening Tool for Autism in Two-YearOlds. Unpublished manuscript, Vanderbilt University, Nashville, TN.
BROOKE YOUNG
SECRETIN Secretin is a peptide hormone that is found in the small intestine, brain, liver, and pancreas. Secretin is a controversial treatment for autism. At this printing, the U.S. Food and Drug Administration does not approve the use of secretin as a treatment for autism as there have been no clinical trials conducted. In 2004, Sturmey conducted a double-blind review of 15 articles related to the use of secretin to treat autism. The review found that none of the research articles reported that secretin showed significant effects, nor was it effective. 321
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REFERENCE Sturmey, P. (2005). Secretin is an ineffective treatment for pervasive developmental disabilities: A review of 15 double-blind randomized controlled trials. Research in Developmental Disabilities, 26, 87–97.
TERRI COOPER SWANSON
SECTION 504 OF THE REHABILITATION ACT OF 1973 The Rehabilitation Act of 1973 contains a variety of provisions focused on rights, advocacy, and protections for individuals with disabilities (U.S. Department of Health and Human Services, n.d.). Specifically, Section 504 of the Rehabilitation Act of 1973 is, in a sense, civil rights legislation for persons with disabilities by prohibiting discrimination on the basis of disabling conditions by programs and activities receiving or benefiting from federal financial assistance (deBettencourt, 2002; Smith, 2001, 2002). According to the U.S. Department of Education (as cited by the U.S. Department of Health and Human Services, 2006), under Section 504 of the Rehabilitation Act, a recipient of federal financial assistance may not, on the basis of disability: ¥ Deny qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. ¥ Deny access to programs, services, benefits, or opportunities to participate as a result of physical barriers. ¥ Deny employment opportunities, including hiring, promotion, training, and fringe benefits, for which they are otherwise entitled or qualified.
Unlike the Individuals with Disabilities Education Act (IDEA), Section 504 protects individuals, birth through adulthood. Whereas IDEA is federally funded, school districts receive money based upon compliance with the law. Since Section 504 is a civil rights statute, the federal government does not provide additional funding for students identified under Section 504 (deBettencourt, 2002). DEFINING TERMS Section 504 protects otherwise qualified individuals from discrimination based on their disability. This means that a person with a disability must be qualified to do something before the presence of the disability can be a factor in discrimination. For example, an individual with attention deficit hyperactivity disorder (ADHD) tries out for a baseball team and does not have the skills to throw, catch, hit the ball, or run the bases and, therefore, is not picked for the team. Discrimination under Section 504 in this case would not be an issue because the individual is not otherwise qualified to be on the team (Smith, 2001, 2002). Section 504 states: No otherwise qualified individual with a disability . . . shall solely by reason of her or his disability be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. (29 U.S.C.A. § 794)
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To be eligible for services under Section 504, then, a person must satisfy this definition for disability. A person is considered to have a disability if he or she (Rehabilitation Act, § 706[8]): ¥ has a physical or mental impairment that substantially limits one or more of such person’s major life activities, ¥ has a record of such an impairment, or ¥ is regarded as having such an impairment.
The Rehabilitation Act of 1973 defines a physical or mental impairment as: (a) any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory, speech organs, cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine; or (b) any mental or psychological disorder such as emotional or mental illness (Smith, 2002, p. 260). The burden of providing proof of this disability falls on the individual (Madaus & Shaw, 2004). Major life activities include a wide variety of daily activities such as caring for oneself, performing manual tasks, walking, stooping, seeing, hearing, speaking, eating, breathing, learning, and working. Basically, any function that is performed routinely by individuals is considered a major life activity. (Smith, 2002) QUALIFYING FOR SERVICES To qualify for services under Section 504, a student must be identified through evaluation procedures that gather information from a variety of sources. A team of knowledgeable personnel is charged with the task of determining whether a disability substantially limits a major life activity. This is a very subjective process. According to Smith (2001), ‘‘substantially limits’’ may be defined as: ¥ unable to perform a major life activity that the average person in the general population can perform, or ¥ significantly restricted as to the condition, manner, or duration for which an individual can perform a particular major life activity as compared to the condition, manner, or duration for which the average person in the general population can perform that same major life activity. (p. 337)
Smith (2001, 2002) recommends that when teams are defining limits they make comparisons to the average child or person. Specifically, decisions should be based upon: the nature and severity of the disability, the duration of the disability, and any long-term impact of the disability. As with the requirements of IDEA, parent notification is required, but contrary to IDEA, for the 504 determination, assessment decisions do not require written parental consent. However, good professional practice would suggest that parental consent be obtained. Section 504 requires ‘‘periodic’’ reevaluation, and a reevaluation is required before a ‘‘significant’’ change in placement takes place. Unlike IDEA, there is no provision that allows for independent evaluation at the school district’s expense (deBettencourt, 2002). It is important to note that children who qualify for protection and services under IDEA also qualify for protection under Section 504. Thus, they are entitled to all the rights and privileges of this act as well (Turnbull, Brennan, & Stowe, 2002). 323
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SERVICES Under Section 504, an ‘‘appropriate’’ education means an education that is comparable to that provided to students without disabilities (deBettencourt, 2002). Blazer (1999) outlines a structured, collaborative approach to program planning that includes parents, the student, and school personnel. Although a written document is not mandated, it is recommended. The Individualized Education Program (IEP) form may be used, but many schools use a different form for the Section 504 plan. There are no specific requirements for parent participation, nor is a time period specified for review of the 504 plan, but best practice suggests reviewing the document annually. For many school-aged children, the major life activity affected by their disability is learning. Accommodations are one way that schools provide services for individuals that qualify for a 504 plan. The vast majority of accommodations will occur in the general education setting. Section 504 is not limited to individuals within the school. For purposes of employment, qualified individuals with disabilities are persons who, with reasonable accommodation, can perform the essential functions of the job for which they have applied or have been hired to perform (Smith, 2002). ‘‘Reasonable accommodation’’ means that employers must take reasonable steps to accommodate the disability unless it would cause them undue hardship. Again, it is important to keep in mind that a person must be otherwise qualified for the job in order for the employer to be required to make reasonable accommodations. In summary, Section 504 is the civil rights legislation that protects persons, birth through death, who qualify for services under IDEA. In addition, it protects all other individuals who meet the definition for having a disability outlined within the Rehabilitation Act of 1973. REFERENCES Blazer, B. (1999). Developing 504 classroom accommodation plans: A collaborative, systematic, parent-student-teacher approach. Teaching Exceptional Children, 32(2), 28–33. deBettencourt, L. U. (2002). Understanding the differences between IDEA and Section 504. Teaching Exceptional Children, 34(3), 16–23. Madaus, J. W., & Shaw, S. F. (2004). Section 504: Differences in the regulations for secondary and postsecondary education. Intervention in School and Clinic, 40(2), 81–87. Rehabilitation Act of 1973, 29 U.S.C. § 701 et seq. Smith, T. E. C. (2001). Section 504, the ADA, and public schools: What educators need to know. Remedial and Special Education, 22(6), 335–343. Smith, T. E. C. (2002). Section 504: What teachers need to know. Intervention in School and Clinic, 37(5), 259–266. Turnbull, H. R., III, Brennan, L. W., & Stowe, M. J. (2002). A brief overview of special education law with focus on autism. Journal of Autism and Developmental Disorders, 32(5), 479–493. United States Department of Education, Office of Special Education and Rehabilitative Services. (2004). The rehabilitation act. Retrieved September 15, 2006, from http://www.ed.gov/ policy/speced/reg/narrative.html. United States Department of Health and Human Services, Office of Civil Rights, (n.d.). Your rights under Section 504 of the rehabilitation act. Retrieved September 15, 2006, from http:// www.hhs.gov/ocr/504.html.
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SEIZURE DISORDER Seizure disorder (or epilepsy) is a neurological disorder in which abnormal electrical signals occur in the brain. There are different kinds of seizure disorders, and people are affected differently by them. Some people experience seizures frequently and others experience them quite infrequently. COMMON TERMINOLOGY Aura Many people experience a ‘‘warning feeling’’ right before a seizure occurs. These warning feelings may include a change in body temperature, a strange taste or smell, or a particular sound. Febrile Seizures These seizures result from a child experiencing a rapidly increasing fever. Although they look like tonic-clonic seizures, these are not epileptic seizures. Partial Seizures In these seizures, the excessive electrical signals occur in only one part of the brain and are many times unnoticeable. In fact, the child may look like he or she is simply daydreaming for a few seconds. These seizures used to be referred to as petit mal seizures. Status Seizures These seizures occur so rapidly that the child does not regain consciousness between seizures. If this occurs, it is considered a medical emergency. Tonic-Clonic Seizures In these seizures, a child undergoes two phases. In the tonic phase, the child loses consciousness and becomes rigid. In the clonic phase, the child’s extremities jerk. After the seizure, the child slowly begins to regain consciousness. SEIZURE DISORDER AND AUTISM There are many causes for a person to develop seizures, although, in some cases, there are no known causes for the seizures. Some known causes include head injury, meningitis, brain tumors, stroke, poisoning, or birth defects that affect the brain. Additionally, several studies have reported that individuals with autism are at a greater risk for developing a seizure disorder. These studies have found that seizure disorders are more common in individuals with autism who have a lower IQ. FURTHER INFORMATION Jurasek, G. (2001). Options in seizure management: The vagus nerve stimulator—experiences to date. Part 1: An introduction to seizure disorders and existing therapies. The Exceptional Parent, 31(8), 107–112. Tuchman, R. (2003). Brain waves, seizures, and the child with autism. The Exceptional Parent, 33(3), 104–107.
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SELECTIVE MUTISM Selective mutism is a childhood disorder, characterized by the persistent failure to speak in at least one social environment. It usually occurs before a child is 5 years old and in most cases the child will speak to their parents and/or select others. The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; APA, 2000, pp. 125–127) defines selective mutism as: ¥ Consistent failure to speak in specific social situations (in which there is an expectation for speaking, e.g., at school) despite speaking in other situations. ¥ The disturbance interferes with educational or occupational achievement or with social communication. ¥ The duration of the disturbance is at least one month (not limited to the first month of school). ¥ The failure to speak is not due to a lack of knowledge of, or comfort with, the spoken language required in the social situation. ¥ The disturbance is not better accounted for by a communication disorder (e.g., stuttering) and does not occur exclusively during the course of a pervasive developmental disorder, schizophrenia, or other psychotic disorder.
Features and severity of selective mutism vary from child to child. Individual children with the disorder sometimes display excessive shyness, fear, anxiety, and embarrassment. They usually do not display other speech or language problems, although there can be associated articulation or phonological difficulty or receptive or expressive language disorder, but these are not implicit in the mutism disorder. Children with selective mutism often will respond by head nodding or gestures. They may ‘‘wait out’’ a person trying to guess what the child wants or needs to communicate. Children with selective mutism have a real fear of speaking and often will stand motionless when requested to speak. Many children from bilingual families, or who have lived in a foreign country, make up a proportion of children who are selectively mute. There is no correlation or association between children who are selectively mute and those who are on the autism spectrum. The differences are distinct in that children who are selectively mute have the ability to speak and process language normally, whereas children with autistic disorders do not process language in the same way as typically developing children, and they display atypical social interactions and repetitive behaviors. Due to the rarity of selective mutism, few professionals are familiar with the disorder, and sometimes misinterpret the child’s behavior as ‘‘just shy,’’ oppositional, or defiant. Often selective mutism is misdiagnosed, and therefore children with the disorder do not receive appropriate treatment. The child with suspected selective mutism should be evaluated by a knowledgeable psychologist and a speech language pathologist should conduct a thorough language evaluation. The evaluation process should include a comprehensive interview with the parent and observations in different settings where the child is expected to speak, such as the home and school. There are several approaches to treatment for selective mutism. Behavioral approaches include the use of positive reinforcement and desensitization techniques. Slowly introducing the child to social environments in nonthreatening ways can help reduce the child’s anxiety of speaking. Play or interaction with one other child in the classroom setting when no one else is there, can be slowly extended into two children, 326
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and then a small group when the child with selective mutism becomes more comfortable and begins to speak. The child should be positively reinforced when he or she is comfortable receiving praise or encouragement. Psychological approaches to treatment, such as play therapy and psychotherapy, can be used effectively when the child does not feel threatened to speak and can help a child lessen his or her anxiety. Cognitive behavior therapy is used to redirect fears and highlight the child’s positive characteristics. Certain medications such as selective serotonin reuptake inhibitors that help reduce anxiety and/or depression have been found to be effective for treating selective mutism, especially when paired with behavioral treatments. Other treatment approaches include self-esteem boosters, frequent socialization, school involvement, and family involvement and acceptance. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
FURTHER INFORMATION Anstendig, K. (1998). Selective mutism: A review of the treatment literature by modality from 1980–1996. Psychotherapy, 35, 381–391. Anstendig, K. D. (1999). Is selective mutism an anxiety disorder? Journal of Anxiety Disorders, 13, 417–434. Bergman, R. L., Piacentini, J., & McCracken, J. T. (2002). Prevalence and description of selective mutism in a school-based sample. Journal of the American Academy of Child and Adolescent Psychiatry, 41, 938–946. Dow, S. P., Sonies, B. C., Scheib, D., Moss, S. E., & Leonard, H. L. (1995). Practical guidelines for the assessment and treatment of selective mutism. Journal of the American Academy of Child and Adolescent Psychiatry, 34(7), 836–846.
ANN PILEWSKIE SELF-ADVOCACY Self-advocacy is the practice of knowing of and controlling one’s own rights, responsibilities, and resources without undue influence from others. See also advocate; self-determination. JEANNE HOLVERSTOTT SELF-CONTAINED CLASSROOM A self-contained classroom is an educational setting outside of the general education classroom where students with disabilities receive educational and related services for the majority of their school day. Students with mental retardation represent the largest disability category represented in self-contained classrooms. KATHERINE E. COOK SELF-DETERMINATION Promoting self-determination has become an increasingly important topic in disability advocacy and supports. This is, in large measure, because people with disabilities have identified enhanced self-determination as being important to and because 327
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research has shown that adolescents and young adults who are more self-determined achieve more positive adult outcomes and a more positive quality of life. The meaning of the term has its roots in the philosophical doctrine of determinism. Determinism refers to the idea or proposition that all events, including human behavior and thought, are caused by events that occurred before the event. Self-determined behavior refers to human behavior that is caused (e.g., determined) by the person as opposed to being caused by someone or something else. People who are self-determined, then, make or cause things to happen in their own lives. They act volitionally (based on their own will, preferences, choices, and interests) instead of being coerced or forced to act in certain ways by others or by circumstances. Just as important, self-determined behavior is intentional and goal oriented. That is, self-determined people intentionally and purposefully act to achieve goals in their lives. Particularly with regard to individuals with more significant intellectual impairments, it is important to note that what constitutes ‘‘self-determined’’ behavior is not independently performing all the steps in achieving a goal, but that it is the person who is causing this to happen. During the twentieth century, the self-determination construct began to be used with reference to the right or rights of people to self-governance. The right to selfdetermination, as applied to citizens of a country or to members of a minority group such as people with disabilities, implies that individuals have the right to a voice in decisions that impact their lives—to have a say in governing themselves. Again, however, even in this group context, self-determination implies that it is the people themselves (self-) who have the right to cause things to happen to and for them—the essence of governing. People with disabilities express the desire both to have greater opportunities to become more self-determined as individuals and to the right to self-determination as a group. SELF-DETERMINATION IN DISABILITY ADVOCACY AND SUPPORTS Efforts to promote self-determination in disability advocacy and services have taken several forms. Among the first such initiatives were programmatic efforts to provide instruction and opportunities to promote the self-determination of transition-age youth with disabilities. Research with adolescents with disabilities has shown that students who leave high school more self-determined achieve more positive adult outcomes, including better employment, community inclusion, and independent living outcomes. Educational efforts focus on teaching students the skills and knowledge they will need to act in a self-determined manner. Curricular areas include teaching decision making, problem solving, goal setting, self-advocacy, and self-management skills. In addition, providing opportunities for students to express preferences and make choices has also been recognized as important. Thus, a frequent practice involves instructional efforts and supports to enable students to play a meaningful role in their own transition planning meeting, including, in some circumstances, having the student be the chairperson for the meeting. A second application of the self-determination construct to disability advocacy and supports has involved initiatives that enable people with disabilities (and, when 328
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necessary or appropriate, their family members) to make decisions about how money and other resources that are intended to provide supports are allocated and used. Historically, funding for services was given to agencies that created these supports. However, many people with disabilities found that available services did not fit their needs well. As an alternative, model programs began to be developed in which the funding went to the person with the disability and/or his or her family, who then made decisions about what services to purchase. These models often involved person-centered planning, individualized budgeting, and the use of service brokers, who act on behalf of the person with the disability or his or her family to identify what options exist to provide the types of supports identified by the person and his or her family. What is central to both of these initiatives and similar efforts is that they enable people with disabilities to act in a self-determined manner—that is, to act volitionally, without coercion, and to make or cause things to happen in their lives. Writing in 2000, Jean Paul Bovee, a man with autism, stated that ‘‘people with autism should be treated with the same dignity, respect, and equality as people without autism’’ (pp. 250–251). Recognizing the importance of promoting self-determination is an important way to ensure that people are treated with dignity and respect and to enable people to attain true equality. REFERENCE Bovee, J. P. (2000). A right to our own life, our own way. Focus on Autism and Other Developmental Disabilities, 15(4), 250–252.
FURTHER INFORMATION Algozzine, B., Browder, D., Karvonen, M., Test, D. W., & Wood, W. M. (2001). Effects of intervention to promote self-determination for individuals with disabilities. Review of Educational Research, 71, 219–277. Field, S., Martin, J., Miller, R., Ward, M., & Wehmeyer, M. (1998). A practical guide to teaching self-determination. Reston, VA: Council for Exceptional Children. Palmer, S., & Wehmeyer, M. L. (2003). Promoting self-determination in early elementary school: Teaching self-regulated problem-solving and goal setting skills. Remedial and Special Education, 24, 115–126. Sowers, J., & Powers, L. (1995). Enhancing the participation and independence of students with severe physical and multiple disabilities in performing community activities. Mental Retardation, 33, 209–220. Test, D. W., Karvonen, M., Wood, W. M., Browder, D., & Algozzine, B. (2000). Choosing a self-determination curriculum: Plan for the future. Teaching Exceptional Children, 33(2), 48–54. Wehmeyer, M. L. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps, 23, 5–16. Wehmeyer, M. L. (1999). A functional model of self-determination: Describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities, 14, 53–61. Wehmeyer, M. L., Abery, B., Mithaug, D. E., & Stancliffe, R. J. (2003). Theory in self-determination: Foundations for educational practice. Springfield, IL: Charles C Thomas, Publisher. Wehmeyer, M. L., Agran, M., & Hughes, C. (1998). Teaching self-determination to students with disabilities: Basic skills for successful transition. Baltimore: Brookes Publishing Co. Wehmeyer, M. L., & Palmer, S. B. (2003). Adult outcomes for students with cognitive disabilities three years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 38, 131–144.
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SELF-HELP SKILLS Wehmeyer, M. L., Palmer, S. B., Agran, M., Mithaug, D. E., & Martin, J. (2000). Teaching students to become causal agents in their lives: The self-determining learning model of instruction. Exceptional Children, 66, 439–453. Wehmeyer, M. L., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation or learning disabilities. Exceptional Children, 63, 245–255.
MICHAEL L. WEHMEYER
SELF-HELP SKILLS Self-help skills generally focus on necessary skills for an individual to perform independently the routine activities of daily living. At the most basic level, these include dressing oneself, demonstrating knowledge of personal hygiene (bathing, brushing teeth, grooming), feeding oneself, and caring for one’s possessions. At a more advanced level, these skills can include knowing how and who to ask for assistance, exercising judgment in terms of interacting with others and decision making, using money to make purchases, traveling in the community independently, maintaining a job, living successfully in semi-independent or independent circumstances, socializing appropriately with peers and coworkers, and other necessary skills expected for independence. See also adaptive behavior; self-advocacy. ANDREA M. BABKIE
SELF-INJURIOUS BEHAVIOR Self-injurious behavior (SIB) is any self-inflicted physical behavior that causes bruises, open wounds, tissue damage, redness, bleeding, and welts. These behaviors are most commonly inflicted by biting the hand, wrist, or arm, head-banging, and scratching or rubbing the skin. Sometimes seen in individuals with autism or severe developmental disabilities, self-injurious behavior may have many reasons for its manifestation. These include possible biochemical problems (release of beta-endorphins from the injury); seizure activity; masking of pain from competing infections, headaches, or gastrointestinal problems; sensory stimulation to increase arousal levels; frustration due to communication difficulties; and social attention. A thorough functional behavioral/ medical analysis is needed to determine causes and interventions for self-injurious behavior. See also functional behavior assessment; seizures; sensory integration. FURTHER INFORMATION Durand, V. M., & Crimmins, D. B. (1988). Identifying the variables maintaining self-injurious behavior. Journal of Autism and Developmental Disorders, 18, 99–117. Dyer, K., & Larsson, E. V. (1997). Developing functional communication skills: Alternatives to severe behavior problems. In N. Singh (Ed.), Prevention and treatment of severe problems: Models and methods in developmental disabilities (pp. 121–148). Pacific Grove, CA: Brooks Cole Publishing Company. Edelson, S. M. (1984). Implications of sensory stimulation in self-destructive behavior. American Journal of Mental Deficiency, 89, 140–145. Edelson, S. M., Taubman, M. T., & Lovaas, O. I. (1983). Some social contexts to self-destructive behavior. Journal of Abnormal Child Psychology, 11, 299–312.
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SELF-REGULATION Self-regulation is the ability of an individual to recognize her own sensory needs and adjust her actions and behaviors as needed to meet the demands of the activity or situation in which she is engaged. KELLY M. PRESTIA
SENSATION AVOIDING Sensation avoiding is a neurological characteristic of individuals who have a low sensory threshold, or tolerance, for sensory stimuli in which they withdraw or avoid certain environments or activities that are overwhelming or unpleasant for them. For example, an individual with a low threshold for tactile stimulation may refuse to wear loose or scratchy clothing. KELLY M. PRESTIA
SENSATION SEEKING Sensation seeking is a neurological characteristic of individuals who have a high threshold, or tolerance, for sensory stimuli. Sensory seekers are constantly looking for sensory stimuli in their environment in an attempt to fulfill their sensory need. The child who runs his hand along the wall as he walks down the hall may be seeking sensory input from the changes in textures on the wall. KELLY M. PRESTIA
SENSORIMOTOR Sensorimotor refers to the connection between movement and sensation. The brain receives sensory information via one or more of the sensory systems, the nervous system processes that information, and the body turns that information into a meaningful, appropriate motor response. KELLY M. PRESTIA
SENSORIMOTOR EARLY CHILDHOOD ACTIVITIES Young children with poor sensory processing abilities, especially those with autism spectrum disorder (ASD), benefit from specific sensorimotor input in order to modulate their nervous systems so that they can participate in activities of daily living. Such activities are most beneficial in early childhood, the period of time when their sensory systems are at the most crucial neurological development. There are many ways to introduce these sensory-rich experiences to children with sensory processing disorder (SPD), for example including sensory strategies incorporated into a child’s daily routine along with sensorimotor activities can help a child maintain a ‘‘just right’’ alertness for participation and focusing. Early childhood sensorimotor activities involve integration on multiple levels. The activities are integrated within the context of a child’s educational curriculum, an integrative team of therapists and teachers work together, and the activities themselves integrate each child’s nervous system in an organized manner. These activities 331
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are based on four principles: (a) they are created around the sensory integration (Ayers, 1979), so that sequenced activities follow sensorimotor development for each lesson plan; (b) they are theme based, as activities are developed around thematic educational curriculum, and literature based, as a storybook is included in every lesson plan, allowing children to develop early emergent literacy skills; (c) they use a transdisciplinary approach to treatment in which an integrated team crosses the disciplinary lines collaborating and modeling for one another utilizing best practice for services; and (d) the children engage in the sensorimotor activities within classroom settings for inclusion with peer models. There can be many different themes included with these early childhood sensorimotor activities, anything from apples to zoo. As outlined by Brack (2004), the structure of the early childhood sensorimotor activities always follows a prescribed sequence: 1. A warm-up activity cues children that group time is ready to begin and introduces them to the theme. 2. A movement activity involving the vestibular system helps to alert the nervous system for engagement. 3. A ‘‘heavy work’’ activity involving the proprioceptive system helps to modulate the nervous system allowing the children to focus. 4. A balance activity is a higher level of sensory integration and balance skills are necessary for large motor skills development. 5. An eye-hand coordination activity helps children develop skills necessary for school readiness, such as handwriting, coloring, and cutting. 6. A cool-down activity helps children attain a ‘‘just right’’ alertness level so that they are prepared to focus on the fine-motor activity. 7. A fine-motor activity completes the routine as the children engage in functional activities. The children work on refined fine-motor coordination skills so that they can hold a pencil, use crayons and scissors, and manipulate fasteners such as buttons and zippers.
Transitions can be difficult for children with SPD and especially children who are on the autism spectrum. Therefore a transition sequence is included in every lesson plan. This involves the children giving themselves a hug, pushing on their heads, (proprioceptive input), blowing a feather (for deep diaphragmatic breathing for sensory modulation), ‘‘kissing their brains’’ for self-affirmation, finally saying, ‘‘You’re so smart, you’re ready to start!’’ While the children are engaged in the sensorimotor activities, they are developing essential school readiness skills for cognitive development, language skills for communication, social skills for cooperative and imaginative play, and emotional development to give courage and hope for children with sensory processing difficulties. See also imagination; proprioception; sensory processing; sensory processing dysfunction; social skills training; vestibular. REFERENCES Ayres, A. J. (1979). Sensory integration and the child. Los Angeles: Western Psychological Services. Brack, J. C. (2004). Learn to move, move to learn: Sensorimotor early childhood activity themes. Shawnee Mission, KS: Autism Asperger Publishing Company.
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SENSORY HISTORY Sensory history is documented information from a primary caregiver regarding an individual’s sensory preferences and patterns of behavior. This information is important in developing appropriate interventions and setting up the individual’s environment for optimal performance. KELLY M. PRESTIA
SENSORY INTEGRATION Sensory integration is often used interchangeably to describe three different, but related, areas. The term sensory integration can describe a theory, a neurological process, and a form of therapy. First, sensory integration is often used to describe a theory developed in the 1970s by Dr. A. Jean Ayres, an occupational therapist who researched sensory functioning in individuals with learning disabilities. Ayres proposed that maladaptive, inappropriate behaviors result from a dysfunction in the nervous system between the sensory receptors: the brain and the motor responses (Ayres, 1979). Sensory integration is a model that describes, as well as anticipates, behavior from a neurological perspective. Ayres also described sensory information as ‘‘food for the brain’’ (Ayres, 1979). Similar to the way our bodies process food for nourishment and physical activity, our brains must process sensory information for optimal physical, cognitive, and neurological development. Fisher and Murray (1991) describe five assumptions of sensory integration as a theory. First, the central nervous system is ‘‘plastic’’—that is, its structure and processes can be modified or changed. Second, sensory integration within the nervous system occurs in a developmental sequence. This means that behaviors can change as the nervous system matures. Third, the brain functions as a whole but the individual sensory systems are organized in a hierarchy. The brain is composed of low and high areas. The lower areas are where the sensory information is received and organized. The higher areas are where more complex, cognitive functioning takes place, such as language, learning, and complex behavior. The emergence of the higher levels is dependent upon the ability of the lower levels to receive, organize, and integrate information properly. Fourth, eliciting adaptive behaviors facilitates a nervous system that functions in an organized, integrated manner. Conversely, an accurately and appropriately functioning sensory and nervous system is reflected through adaptive responses. Sensory integration theory believes that the development of behaviors is circular, in that each behavior gives feedback to the nervous system, which in turn, promotes further maturation of the nervous system. Finally, there is an inner drive within people to develop integration between their sensory systems and nervous system through sensorimotor activities. Simply ‘‘being’’ or ‘‘seeing’’ is not enough for people. Individuals have a strong desire to explore and learn about their environment and its contents for themselves. Sensory integration also describes the neurological process between the sensory receptors, the brain, and the muscles and nerves that produce behaviors and responses. It is the ability of the brain to receive input from various receptors in the body, organize and prioritize that input, and produce an appropriate behavior or response, known as an adaptive behavior or adaptive response. The sensory receptors have two 333
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main functions. First, sensory receptors respond to a sensation to alert or arouse the brain to generate awareness. This is important for detecting harmful situations. Second, the receptors respond to gather information about the environment to create a sort of ‘‘map’’ of the body and the environment. These ‘‘maps’’ help the brain to organize a response and take appropriate action. It also helps us to differentiate objects in the environment, and know where our bodies end and where the world begins. In typical sensory integration, these two functions of the sensory receptors work together and balance one another so that we may be alerted to harmful situations, as well as learn from our environment. When an imbalance of these two systems occurs, a dysfunction of sensory integration occurs. Typical sensory integration is important for the development of self-control, self-esteem, motor skills, and higherlevel cognitive functions (Kranowitz, 2003). When sensory integration within the body is disrupted or dysfunctional, atypical or inappropriate behaviors and responses can be seen. Third, sensory integration can also refer to a specific therapeutic intervention, often provided by an occupational therapist. Sensory integration therapy is a direct intervention, which provides controlled sensory input, often combined with physical activity, to produce an adaptive response. Interventions that combine increasing challenges with activities in which the individual is already successful often have the most successful results for changing behaviors. The behaviors and responses of the individual receiving sensory integration therapy must be carefully monitored by the intervening therapist to determine if the sensory input is appropriate in intensity and length, and is meaningful to the individual. If sensory stimulation is too intense or not meaningful for the individual, then no change in response or an adverse change in responses may occur. The overall goal of sensory integration therapy is to rewire the nervous system to process and organize sensory information more efficiently and effectively to produce adaptive responses. Before an intervention begins, the intervening therapist may use specific assessment tools to gather important information about how the individual is functioning. For example, The Sensory Profile (Dunn, 1999) or The Sensory Integration and Praxis Test (Ayres, 1989) are tools used by professionals to gather information regarding the individual’s ability to process sensory information, and how they respond to typical sensory stimuli. Specialized certifications and training programs in sensory integration therapy are available for professionals. See also maladaptive behavior; self-injurious behavior. REFERENCES Ayres, A. J. (1979). Sensory integration and the child. Los Angeles: Western Psychological Services. Ayres, A. J. (1989). The sensory integration and praxis test. Los Angeles: Western Psychological Services. Dunn, W. (1999). The sensory profile. San Antonio, TX: Harcourt Assessment. Fisher, A. G., & Murray, E. A. (1991). Introduction to sensory integration theory. In A. G. Fisher, E. A. Murray, & A. C. Bundy (Eds.), Sensory Integration Theory and Practice (pp. 3, 15–17). Philadelphia: F. A. Davis Company. Kranowitz, C. S. (2003). The out of sync child has fun. New York: Berkley Publishing Group.
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SENSORY INTEGRATION AND PRAXIS TEST (SIPT) The Sensory Integration and Praxis Test (SIPT; Ayres, 1989) is a standardized battery consisting of 17 subtests designed to identify patterns of function and dysfunction in sensory integration and motor planning (praxis). Administration of this assessment is time-consuming (2–3 hours) and scoring is tedious (computer scoring programs can help cut down on scoring time). It is appropriate for use with children ages 4 through 8 years, 11 months of age. Competent administration and interpretation of this assessment require specific training and certification provided by Sensory Integration International or Western Psychological Services. REFERENCE Ayres, J. (1989). The Sensory Integration and Praxis Test. Los Angeles: Western Psychological Services.
LISA ROBBINS
SENSORY INTEGRATION DYSFUNCTION Individuals on the autism spectrum are often called lazy, overactive, stubborn, or even accident prone. These descriptions often misrepresent individuals when it comes to the child with an autism spectrum disorder (ASD). Many individuals with ASD have difficulty regulating their sensory systems. This is known as sensory integration dysfunction (SID). A. Jean Ayres (1973) wrote Sensory Integration and Learning Disorders. It was in this first book that she described the first six sensory modalities: (a) the vestibular system, (b) the tactile system, (c) proprioception, (d) the auditory system, (e) olfaction, and (f) vision. Today professionals in the area of sensory systems have added the gustatory system to the sensory systems to make the total seven. These seven sensory systems work together to interpret the sensory input coming in from the environment, changing the input into information that the body can use. For further descriptions of each sensory system and where they are found, see Table 7. SID is the inability of the sensory system to interpret input from the environment in a manner that is usable. Individuals with SID do not effectively utilize sensory information coming through the sensory systems in a manner that is functional. As a result, individuals with SID appear to be clumsy, unoriented, or lazy (Miller & Lane, 2000). In response, an individual may avoid confusing or distressing sensations or seek out more of the sensation to find out more about it (Biel & Peske, 2005). A variety of sensory assessments are available to provide the necessary information for professionals, such as occupational therapists, to provide the correct form of sensory integration therapy. Commonly used assessments include: (a) the Sensory Profile (Dunn, 1999), (b) the Short Sensory Profile (McIntosh, Miller, Schyu, & Dunn, 1999), and (c) Sensory Integration and Praxis Test (SIPT; Ayres, 1989). Administration and interpretation of these assessments are typically the first steps in determining the type(s) of sensory integration therapy necessary for an individual. These interventions aid the sensory systems of individuals with SID to organize themselves, thus allowing the child to function appropriately. 335
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Table 7. Location and Functions of the Sensory Systems System
Location
Function
Tactile (touch)
Skin—density of cell distribution varies throughout the body. Areas of greatest density include mouth, hands, and genitals. Inner ear—stimulated by head movements and input from other senses, especially visual.
Provides information about the environment and object qualities (touch, pressure, texture, hard, soft, sharp, dull, heat, cold, pain).
Vestibular (balance)
Proprioception (body awareness) Visual (sight)
Muscles and joints—activated by muscle contractions and movement. Retina of the eye—stimulated by light.
Provides information about where our body is in space, and whether or not we or our surroundings are moving. Tells about speed and direction of movement. Provides information about where a certain body part is and how it is moving. Provides information about objects and persons. Helps us define boundaries as we move through time and space. Provides information about sounds in the environment (loud, soft, high, low, near far). Provides information about different types of taste (sweet, sour, bitter, salty, spicy).
Auditory (hearing)
Inner ear—stimulated by air/ sound waves.
Gustatory (taste)
Chemical receptors in the tongue—closely entwined with the olfactory (smell) system. Chemical receptors in the nasal Provides information about different structure—closely associated types of smell (musty, acrid, putrid, with the gustatory system. flowery, pungent).
Olfactory (smell)
Source: From Asperger Syndrome and Sensory Issues: Practical Solutions for Making Sense of the World (p. 5), by B. S. Myles, K. T. Cook, N. E. Miller, L. Rinner, & L. A. Robbins, 2000, Shawnee Mission, KS: AAPC.
REFERENCES Ayres, A. J. (1973). Sensory integration and learning disorders. Los Angeles: Western Psychological Services. Ayres, A. J. (1989). Sensory integration and praxis test. Los Angeles: Western Psychological Services. Biel, L., & Peske, N. (2005). Raising a sensory smart child. New York: Penguin Books. Dunn, W. (1999). The Sensory Profile: A contextual measure of children’s responses to sensory experiences in daily life. San Antonio, TX: The Psychological Corporation. McIntosh, D. N., Miller, L. J., Schyu, V., & Dunn, W. (1999). Short sensory profile. San Antonio, TX: The Psychological Corporation. Miller, L. J., & Lane, S. J. (2000). Toward a consensus in terminology in sensory integration theory and practice: Part 1: Taxonomy of neurophysiological processes. Sensory Integration Special Interest Section Quarterly, 23(1), 1–4. Myles, B. S., Cook, K. T., Miller, N., Rinner, L., & Robbins, L. (2000). Asperger syndrome and sensory issues: Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing Company.
FURTHER INFORMATION Brack, J. C. (2004). Learn to move; move to learn: Sensorimotor early childhood themes. Shawnee Mission, KS: Autism Asperger Publishing Company.
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SENSORY PROFILE Brack, J. C. (2005). Sensory processing disorder: Simulations and solutions for parents, teachers and therapists. Shawnee Mission, KS: Autism Asperger Publishing Company. Emmons, P. G., & Anderson, L. M. (2005). Understanding sensory dysfunction: learning, development and sensory dysfunction in autism spectrum disorders, ADHD, learning disabilities and bipolar disorder. London: Jessica Kingsley. Kranowitz, C. (1998). The out of sync child: Recognizing and coping with sensory integration dysfunction. New York: Skylight Press. Williams, M. W., & Shellenberger, S. (1996). How does your engine run? A leader’s guide to the Alert Program for Self-Regulation. Albuquerque, NM: Therapy Works. Yack, E., Aquilla, P., & Sutton, S. (2003). Building bridges through sensory integration (2nd ed.). Las Vegas: Sensory Resources.
JENNIE LONG SENSORY INTEGRATION INVENTORY–REVISED (SII-R) The Sensory Integration Inventory–Revised (SII-R; Reisman & Hanschu, 1992) is a screening tool can be used in two ways: (a) it can be completed by therapists, staff, or teachers familiar with a child in approximately 30 minutes; or (b) it can be used by an occupational therapist as a semistructured interview for parents, teachers, caregivers, and others. Respondents mark whether or not a described behavioral response is typical, not typical, or unsure if the behavior is typical or not. Items are organized into four sections: tactile, vestibular, proprioceptive, and general reactions. Items are considered to reflect possible patterns of sensory processing difficulties. See also proprioception. REFERENCE Reisman, J., & Hanschu, B. (1992). Sensory integration inventory–revised. Farmington, MA: Therapro, Inc.
LISA ROBBINS SENSORY PROCESSING Sensory processing is the process of receiving sensory information from the environment through one or more of the senses and transmitting that information to the brain. See also sensory integration; sensory integration disorder; sensory processing dysfunction. KELLY M. PRESTIA SENSORY PROCESSING DYSFUNCTION Sensory processing dysfunction is the inability to accurately perceive sensory information from the environment through one or more of the sensory systems. See also sensorimotor early childhood activities; sensory integration disorder. KELLY M. PRESTIA SENSORY PROFILE The Sensory Profile (Dunn, 1999) is a norm-referenced questionnaire completed by someone who is very familiar with the child. The items on the profile describe children’s behavioral responses to different sensory experiences, and their ability to modulate/adjust their reactions efficiently. It provides a description of emotional and 337
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behavioral responses associated with sensory processing difficulties. The Sensory Profile can be given in an interview format or to the respondent for independent completion. The person completing the profile reads each description and determines how often the child engages in a certain behavior (always, frequently, occasionally, seldom, or never). Scoring and interpretation takes approximately 20 to 30 minutes. See also norm-referenced assessment; sensory integration disorder. REFERENCE Dunn, W. (1999). Sensory profile. San Antonio, TX: Harcourt Assessment.
LISA ROBBINS SENSORY SENSITIVITY Sensory sensitivity is a neurological characteristic of individuals who have a low threshold, or tolerance, for sensory stimuli. Accordingly, these individuals are easily overwhelmed or disorganized by sensory information. Individuals with sensory sensitivity may be easily distracted or hyperactive, as they attend to all new stimuli in their environment. KELLY M. PRESTIA SENSORY STIMULI Sensory stimuli is a general term that refers to any occurrence within an environment that evokes a response. KELLY M. PRESTIA SENSORY THRESHOLD Sensory threshold refers to the amount of a stimulus needed to evoke a response from an individual. Thresholds are neurological points within the nervous system at which an action may result when enough of a stimulus is provided. KELLY M. PRESTIA SEROTONIN Serotonin is a chemical that serves as a neurotransmitter in the brain but also is found in other parts of the body with other functions. It is found in gastrointestinal mucosa, platelets (for blood clotting), and mast cells (related to allergies and inflammation). BRUCE BASSITY SETTING EVENTS A setting event is something happening in the environment that controls or influences behavior. This control usually takes the form of temporarily changing the way an individual responds to an interaction that follows the setting event. For example, a student is being bullied on the bus ride home. This is a setting event for the interactions that he will have at home that evening, and possibly even into the next day.
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The setting events for a behavior may not always happen immediately before the behavior; there may be a delayed impact. See also applied behavior analysis. FURTHER INFORMATION Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Pearson Education.
KATIE BASSITY SHAPING Shaping is a behavioral strategy used to teach an individual a new behavior. Shaping a new behavior involves providing reinforcement for successive approximations of the target behavior. Reinforcement is provided each time a behavior is exhibited that approximates the target behavior. Once that particular behavior is firmly established in the individual’s repertoire of behaviors, then reinforcement is reserved only for a new behavior that more closely approximates the target behavior. This process is continued to help guide the individual towards the acquisition of a goal behavior in a step-by-step manner. See also applied behavior analysis. FURTHER INFORMATION Anderson, S. R., Taras, M., & Cannon, B. O. (1996). Teaching new skills to young children with autism. In C. Maurice, G. Green, & S. L. Luce (Eds.), Behavioral intervention for young children with autism (pp. 181–194). Austin, TX: Pro-Ed.
ANDREA HOPF
AND
TARA MIHOK
SHORT SENSORY PROFILE The Short Sensory Profile (Dunn, 2001) is a 38-item abbreviated form of the Sensory Profile (1999) and is appropriate for children ages 3 to 17. It can be used as a screening tool to determine whether or not more in-depth assessment is needed in the area of sensory processing. It can be completed in about 10 minutes by someone who knows the child, and scored and interpreted in 10 to 20 minutes by someone with knowledge in the area of sensory integration. REFERENCES Dunn, W. (1999). Sensory profile. San Antonio, TX: Harcourt Assessment. Dunn, W. (2001). Short sensory profile. San Antonio, TX: Harcourt Assessment.
LISA ROBBINS SIBLING SUPPORT PROJECT Sibling Support Project is a national program devoted to providing information and creating peer support programs for siblings of individuals with disabilities, illnesses, and mental health issues. This project provides workshops, listservs, children’s books, publications, and Web sites to assist siblings of all ages gain a better understanding of their brother or sister and cope with the unique issues surrounding having a sibling 339
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with a disability. Additionally, the Sibling Support Project has developed curricula to assist agencies or schools in developing Sibshops. FURTHER INFORMATION 6512 23rd Ave NW, #213 Seattle, WA 98117 Phone: 206.297.6368 Fax: 509.752.6789 Web site: www.thearc.org/siblingsupport/.
KATHERINE E. COOK SIBSHOPS In families that include children with disabilities, siblings of exceptional children are often lost in the shuffle. Siblings should be included in planning for meeting the needs of families with children with disabilities. Often siblings may assume roles not required in the typical family such as taking on care-giving roles similar to a parent. Research shows that meeting the needs of typical siblings is critical in the big family picture (Winter, n.d.). Donald Meyer, the director of The Sibling Support Project, created Sibshops in 1994 as a way to support typical siblings and help them deal with their personal situations involving their families in a healthy manner. Typical siblings deal with a variety of concerns that need to be addressed in an appropriate manner. These include isolation, feeling guilt about or resentment toward their sibling and/or family, being a caregiver to their sibling, feeling pressured to perform well in school, and other activities and future concerns regarding their sibling (Harakas, 2005a). Sibling concerns should be addressed as part of the whole family’s health and well-being. Often Sibshops are described as parties or celebrations for these brothers and sisters who bring so much to their exceptional families. They were created specifically for child siblings of individuals with health and developmental needs but have been modified successfully for similar concerns. Currently the Sibshop model is used in 160 specific gatherings including 10 countries worldwide. These countries include: Argentina, Canada, Croatia, England, Guatemala, Iceland, Japan, Mexico, New Zealand, and the United States (Harakas, 2005b). The Sibshop model has five specific goals for each session. First, Sibshops will provide typical siblings the opportunity to meet with other brothers and sisters in a fun and recreational event. Second, the activity will allow opportunities to share common joys and difficulties with other typical siblings. Third, siblings will have an opportunity to see how other siblings handle similar situations they have encountered in their own lives. Fourth, siblings will have a chance to learn more about the needs of their exceptional sibling. Finally, Sibshops will gain information about the needs and concerns experienced by typical siblings of individuals with disabilities, which will, in turn, be shared with parents and professionals in the hopes of better meeting the needs of the whole family (Meyer & Vadasy, 2000). By having these goals, Sibshops are easily run by organizations that have received the proper training and keep these goals in mind with planning. Sibshops were originally created for children ages 8 to 13, but with a little modification they can meet the needs of older and younger siblings. They have been adapted 340
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to meet the needs of specific populations as well. Sibshops are recreational in theme, with fun games and activities, as well as time for discussions. They are designed to be unique and appeal to a wide variety of children. Sibshops can be held on a weekly, monthly, or yearly schedule (Meyer & Vadasy, 2000). Sometimes they are offered in conjunction with conferences for parents. Sibshops run from 2 to 6 hours and include a variety of activities and discussions that are similar during each meeting. Sibshops generally start with a ‘‘trickle-in activity’’ that allows latecomers to arrive and time for participants to transition into the activities. This is followed with an introductory activity. The rest of the time is filled with fun recreational games, crafts, peer discussion groups, informational activities, and guest speakers (Meyer & Vadasy, 2000). One favorite activity that is a standard for Sibshops is ‘‘Dear Aunt Blabby.’’ During this activity, Aunt Blabby, a fictional advice columnist, requires expert help in answering letters written by typical siblings with an exceptional brother or sister. Aunt Blabby does not have a sibling with a disability and requires expert help in answering her letters. Participants are asked to read a letter to Aunt Blabby and then answer it using their own expertise and experiences. This is an easy activity to involve siblings, as they are often interested in sharing their own ideas and experiences (Meyer & Vadasy, 2000). Successful Sibshops require forethought and preparation. Depending on the expected attendance there should be at least two facilitators. In general, it is best to have an adult sibling as a facilitator to share their perspectives. Other appropriate facilitators are often service providers and could include teachers, nurses, doctors, therapists, social workers, and psychologists. Parents of exceptional children may volunteer their services but should not facilitate a Sibshop in which their child participates (Meyer & Vadasy, 2000). Sibshops are not a therapy, although a therapeutic effect may be seen in some participants. They offer similar support that an adult group would offer to parents in a parent support group (Harakas, 2005b). They focus on the idea that most families are functioning acceptably with concerns and issues and offer a safe place to share and learn. Facilitators of Sibshops may refer siblings for further interventions if concerns are noted (Meyer & Vadasy, 2000). One study showed that there was no significant increase in self-esteem in siblings (D’Arcy, Flynn, McCarthy, O’Connor, & Tierney 2005). However, most reported they liked the activities and thought they had learned from the event. Parents also reported positively regarding the program and felt their typical children received benefits from attending. Sibshops are a valuable tool for families with exceptional and typical siblings. They offer a fun, safe environment for typical siblings to share their experiences and learn from other typical siblings as they engage in activities. While Sibshops are not considered therapy, they offer a supportive place for siblings to interact with other typical peers with similar families. Sibshops are similar to a support group setting for adults, just geared to meet the needs of children. REFERENCES D’Arcy, F., Flynn, J., McCarthy, Y., O’Connor, C., & Tierney, E. (2005). Sibshops: An evaluation of an interagency model. Journal of Intellectual Disabilities, 9(1), 43–57.
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SINGLE PHOTON EMISSION COMPUTED TOMOGRAPHY Harakas, M. (2005a, January 2). The invisible ones. South Florida Sun-Sentinel. Retrieved December 10, 2006, from http://www.sun-sentinel.com/features/lifestyle/sfl-lisiblingsjan02,0, 4197092.story?coll=sfla-features-headlines. Harakas, M. (2005b, January 2). Sibshops is about fun, friendship. South Florida Sun-Sentinel. Retrieved June 10, 2005, from www.sun-sentinel.com/features/lifestyle/sfl-lisiblings-sidejan02, 0,6947269.story?coll=sfla-features-headlines. Meyer, D. J., & Vadasy, P. F. (2000). Sibshops: Workshops for siblings of children with special needs. Baltimore: Brooks Publishing Co. Winter, J. (n.d.) Sibshops. Retrieved June 10, 2005, from www.enabledonline.com/BackIssues/ Jan-Feb2002/text/kids1.html.
FURTHER INFORMATION Meyer, D. J. (Ed.). (2005). The sibling slam book: What it is really like to have a brother or sister with special needs. Bethesda, MD: Woodbine House. The Sibling Support Project: www.siblingsupport.org.
VALERIE JANKE REXIN SINGLE PHOTON EMISSION COMPUTED TOMOGRAPHY. See Positron Emission Tomography
SINGLE-SUBJECT DESIGN Single-subject design is often considered the design of choice when measuring behavioral change or when performing behavioral modification. Rather than comparing groups of subjects, this design relies on the comparison of treatment effects on a single participant or on a small group of individuals. See also behavior modification. JAN L. KLEIN
SITUATION-OPTIONS-CONSEQUENCES-CHOICES-STRATEGIESSIMULATION (SOCCSS) SOCCSS, the Situation-Options-Consequences-Choices-Strategies-Simulation strategy, was developed by Jan Roosa (Myles & Adreon, 2001) to help students with social disabilities process social situations and develop problem-solving skills by putting social and behavioral issues in a sequential form. SOCCSS is commonly used after a social situation to help students process and interpret the situation and their choices. This strategy may also be used to preteach social skills or social situations that the students may encounter. This may be done in a small group or a one-on-one situation. The steps in the SOCCSS strategy are as follows: 1. Situation: Following a social problem, students report to a teacher the who, what, when, where, and why of the conflict. Who was involved in the situation? What actually happened? When did it happen? Where did the problem occur? Why did it happen? As the students become familiar with the SOCCSS strategy, the goal is for them to independently report these variables without prompting. 2. Options: The students and adult brainstorm behavioral options that the student could have chosen. The adult should accept all answers and record them on the SOCCSS form.
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3.
4.
5.
6.
At the beginning of the process, adults may need to encourage the students to brainstorm multiple options that they could have chosen. Consequences: For each behavioral option generated, a consequence is listed. To do so, the adult asks the student, ‘‘So what would happen if you. . .’’ and names the first option from the list. As the adult goes down the list of created options, some of the options may have one or more consequences. Students may have difficulty generating consequences; thus role-playing at this stage may be beneficial. Choices: Options and consequences are prioritized using 1 through 5 or a yes/no response. Once prioritized, the student should be prompted to pick the choice that she thinks (a) she will be able to carry out, and (b) the one that most likely gets her what she wants. Strategies: Next, the student develops a plan to carry out the choice that she made if the situation occurs again. It is crucial for the student to develop the plan so she feels like she has ownership over the plan. Simulation: Practice is the last stage in the SOCCSS strategy. Simulation can occur by visually imagining, talking with another person about the plan, writing down the plan, or role-playing. Regardless of the method selected, the student ends up evaluating his impressions of the simulation.
SOCCSS allows students to learn cause and effect, that choices exist in all situations, and that, through choice making, they can impact the result of the situation. REFERENCE Myles, B. S., & Adreon, D. (2001). Asperger syndrome and adolescence: Practical solutions for school success. Shawnee Mission, KS: Autism Asperger Publishing Company.
MELISSA L. TRAUTMAN SOCIAL ARTICLES. See Social Stories
SOCIAL AUTOPSIES Developed by Richard LaVoie (cited in Bieber, 1994), social autopsies are designed to help students with autism spectrum disorders (ASD) understand social situations and mistakes made during those situations. A social skills autopsy is guided by an adult who asks a series of questions to identify the error and possible solutions. These questions and their answers can be documented in a worksheet, filled out either by the student or the teacher. This visual format capitalizes on the favored mode of processing for many students with ASDs, and serves as a record to reference in future situations. For an example of what a social autopsy worksheet may look like, see Figure 17. The autopsy begins with an adult asking, ‘‘What happened?’’ to the student. This prompt allows the student to start the process of ‘‘dissecting’’ the social situation. As the student describes the social situation, the adult asks clarifying questions designed to help the student identify the error, determine who was harmed by the error, decide how to correct the error, and finally develop a plan so that the error does not happen again. Social autopsies help students learn the cause-and-effect relationship between a social behavior and its consequences. Adults in all of the students’ environments should be knowledgeable on how to complete a social autopsy to help foster generalization and skill acquisition. See also social skills training; theory of mind. 343
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Figure 17 Worksheet for Social Autopsies
Source: Myles, B. S., & Adreon, D. A. (2001). Asperger syndrome and adolescence: Practical solutions for school success (p. 109). Shawnee Mission, KS: Autism Asperger Publishing Company.
REFERENCES Bieber, J. (1994). Learning disabilities and social skills with Richard LaVoie: Last one picked . . . first one picked on. Washington, DC: Public Broadcasting Service. Myles, B. S., & Adreon, D. A. (2001). Asperger syndrome and adolescence: Practical solutions for school success. Shawnee Mission, KS: Autism Asperger Publishing Company.
MELISSA L. TRAUTMAN SOCIAL BEHAVIOR MAPPING Social behavior mapping is a practical strategy that helps us explore how our own behavior causes people to have emotional reactions that impact how others react to us (the consequences, positive or negative), which then impacts how we feel about ourselves. The map is a cognitive behavioral strategy to help students explore how all 344
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behavior, when produced in the presence of others, impacts others as well as one’s self. Another important feature of the social behavior map is that it explores the notion that behavioral expectations vary by environment, or context within a specific environment. (For example: at dinnertime, or while working in the classroom, eating in the cafeteria, etc.) Within each environment or context there is a set or sets of ‘‘hidden curriculum’’ (hidden rules) that we are expected to follow and adjust our behavior to in order to keep those around us calm and responding to us in a neutral or positive (versus negative) way. The social behavior maps (SBM) are usually printed on two sides of one piece of paper: on one side of the paper are the ‘‘expected behaviors’’ and on the other side are the ‘‘unexpected behaviors.’’ See Tables 8 and 9 for examples of expected and unexpected social behavior maps. To use the map well, those working with a student need to catch the child in the ‘‘act of doing what is expected,’’ and then demonstrate the resulting behavioral chain by circling the words or concepts that best represent the student’s expected behavior, how it makes someone feel, the natural consequences the communicative partner produced in response to the behavior, and then how the student feels about himself on the ‘‘expected side of the SBM.’’ Draw lines to connect one circle to the next; this provides a graphic organizer of social behavioral responses. On less frequent occasions, the maps can be turned over to the ‘‘unexpected side’’ and the unexpected behavior, related emotional responses, and resultant consequences should also be circled with lines drawn to connect the circles and demonstrate the overall effect a behavior has on the interaction pattern with
Table 8. Social Behavior Mapping: Expected Behaviors *Expected Behaviors
Feelings of Other People
Consequences
1. Listen with body and eyes 2. Use a 2 ft. voice
1. Happy
1. People talk to you with a calm faces and voice 2. The teacher may praise you 3. You may earn rewards for working as part of the group 4. Other students want to include you in their work and or play
3. Use friendly words
4. Talk about what the group is talking about 5. Don’t let words bump into others
2. Proud 3. Pleased that you are learning as part of the group 4. Calm
How You Feel about the Consequences 1. Happy 2. Proud of myself 3. Confident that I can be a good student 4. You stay calm
5. Group members feel good because they can learn too
6. Follow directions 7. Do the work, even if it is boring or you think you already know how to do it *Behaviors/feeling/consequences are listed in categories in arbitrary order. There is not a 1:1 correlation between the information listed in each column. For example: whatever behavior is listed first does not have to match to the first emotional reaction or the first consequence, etc.
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Table 9. Social Behavior Mapping: Unexpected Behaviors *Unexpected Behaviors
Feelings of Other People
Consequences
1. Distracted as body and eyes are not focused on the teacher 2. Use a loud voice
1. Unhappy
1. People talk to you with an unhappy faces and voice 2. The teacher may nag you to do what is expected 3. You may lose privileges
2. Frustrated
3. Use unfriendly words
3. Worried you are not working as part of the group 4. NOT talking about what the 4. Stressed group is talking about 5. Words bump into others
How You Feel about the Consequences 1. Mad
2. Sad
3. Stressed out
4. Other students may not want to work or play with you
5. Group members feel frustrated because you are not working with the group
6. Do NOT follow directions 7. Avoid doing the classwork *Behaviors/feeling/consequences are listed in categories in arbitrary order. There is not a 1:1 correlation between the information listed in each column. For example: whatever behavior is listed first does not have to match to the first emotional reaction or the first consequence, etc.
others. This side should be used far less frequently since our job as parents and educators is to illuminate when our students are doing what is expected (typically this set of behaviors is ignored by others) and then contrast that cycle of behavior and emotional responses with what happens when the unexpected does occur. Students always do more expected than unexpected behaviors; we have to learn to positively acknowledge this! An example of information gleaned from social behavior maps is demonstrated below. SBMs can be written for any situation and individualized to what a child needs to focus on. See also cognitive learning strategies; social cognition; social skills training. FURTHER INFORMATION Attwood, T. (2006). The complete guide to Asperger syndrome. London: Jessica Kingsley Publishers. Buron, K. D., & Curtis, M. (2003). The incredible 5-point scale. Shawnee Mission, KS: Autism Asperger Publishing Company. Gray, C. (1994). Comic strip conversations. Arlington, TX: Future Horizons. Winner, M. (2000). Inside out: What makes the person with social cognitive deficits tick? San Jose, CA: Michelle Garcia Winner. Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Michelle Garcia Winner. Winner, M. (2003). Social thinking across the home and school day (DVD). Grand Rapids, MI: The Gray Center Publishers.
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SOCIAL COMMUNICATION QUESTIONNAIRE (SCQ) Winner, M. (2005). Think social! A social thinking curriculum for school aged students. San Jose, CA: Michelle Garcia Winner. Winner, M. (2005). Worksheets! For teaching social thinking and related skills. San Jose, CA: Michelle Garcia Winner.
MICHELLE GARCIA WINNER
AND JAMIE
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SOCIAL COGNITION. See Social Thinking SOCIAL COMMUNICATION Generally, social communication refers to a field of study that primarily explores the ways information can be perceived. It could also be used to assess severity of symptoms in individuals with autism spectrum disorder. It refers to the communication of cognitive and emotional information through facial expression, gestures, and prosody, and through implicit understanding of pragmatics. Moreover, it implies knowledge of the social rules of human communication and the implicit ability to deduce the thoughts and motives of others, a phenomenon that has been called theory of mind (Baron-Cohen, 1995). REFERENCE Baron-Cohen, S. (1995). Mind blindness. Cambridge, MA: MIT Press.
FURTHER INFORMATION Tanguay, P., Robertson, J., & Derrick, A. (1998). A dimensional classification of autism spectrum disorder by social communication domains. Journal of the American Academy of Child and Adolescent Psychiatry, 37, 271–277.
JOUNG MIN KIM SOCIAL COMMUNICATION QUESTIONNAIRE (SCQ) The Social Communication Questionnaire (SCQ), formerly published as the Autism Screening Questionnaire, is a parent report questionnaire designed by Berument, Rutter, Lord, Pickles, & Bailey (1999) to screen for autism spectrum disorder in clinical populations. The SCQ is based on DSM-IV-TR criteria for autism, and closely follows the Autism Diagnostic Interview–Revised (ADI-R; Lord, Rutter, & LeCouteur, 1994) algorithm for autism. There are two versions of the SCQ: one for children younger than age 6, and one for individuals 6 years and older. The SCQ is designed to differentiate children with pervasive developmental disorders from those who do not have pervasive developmental disorders in a clinic-based sample (i.e., those who are already referred to medical services with possible developmental disorder). The SCQ does not differentiate between subgroups on the autism spectrum. The authors point out that the questionnaire is not recommended for use at a population level (Bailey, 2001). REFERENCES Bailey, A. (2001). The social communication questionnaire. Presentation at NIASA working group meeting on screening and surveillance for autism spectrum disorders for pre-school and school-age children. London: National Autistic Society.
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SOCIAL COMPETENCE Berument, S. K., Rutter, M., Lord, C., Pickles, A., & Bailey, A. (1999). Autism screening questionnaire: Diagnostic validity. British Journal of Psychiatry, 174, 444–451. Lord, C., Rutter, M., & LeCouteur, A. (1994). Autism diagnostic interview–revised: A revised version of a diagnostic interview for careers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659–685.
FIONA J. SCOTT SOCIAL COMPETENCE Social competence indicates the abilities to establish meaningful, emotional-based relationships; to work collaboratively with classmates, coworkers, or other teammates; and to participate in various social settings, including schools, workplaces, or communities (Gutstein & Whitney, 2002). Three essential elements of social competence include secure attachment, instrumental social learning, and experiencesharing relationships (Bruner, 1983; Emde, 1989; Fogel, 1993; Gottman, 1983). Attachment refers to the bond and secure relationship between children and caregivers; instrumental social learning helps individuals understand the relationships between specific social behaviors and the desired consequences; experience-sharing relationships are the fundamental principles of establishing friendships. Children with autism spectrum disorders demonstrate limited social competence, such as lacking eye contact, facial expression, social play, joint attention, reciprocal communication/interaction, and so on. See also social skills training. REFERENCES Bruner, J. S. (1983). Child’s talk. Oxford, UK: Oxford University Press. Emde, R. N. (1989). The infant’s relationship experience: Developmental and affective patterns. In A. Sameroff & R. Emde (Eds.), Relationship disturbances in early childhood: A developmental approach (pp. 33–51). New York: Basic Books. Fogel, A. (1993). Developing through relationships. Chicago: The University of Chicago Press. Gottman, J. M. (1983). How children become friends. Monographs of the Society for Research in Child Development, 48(3), 1–82. Gutstein, S. E., & Whitney, T. (2002). Asperger syndrome and the development of social competence. Focus on Autism and Other Developmental Disabilities, 17(3), 161–171.
YU-CHI CHOU SOCIAL FAUX PAS The ability to detect a social faux pas is an ‘‘advanced’’ theory of mind ability. Typically the ability to detect social faux pas develops around age 8 (Baron-Cohen, O’Riordan, Stone, Jones, & Plaisted, 1999). Individuals with an autism spectrum disorder have challenges with theory of mind; that is, they have difficulty with perspective taking. In a test to detect advanced theory of mind, Happe (1994) uses sarcasm, bluff, irony, and the double bluff to assess a person’s ability to detect a social faux pas. See also false-belief paradigm; theory of mind. REFERENCES Baron-Cohen, S., O’Riordan, M., Stone, V., Jones, R., & Plaisted, K. (1999). A new test of social sensitivity: Detection of faux pas in normal children and children and Asperger syndrome. Journal of Autism and Developmental Disorders, 29, 407–418.
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SOCIAL SCRIPTS Happe, F. (1994). An advanced test of theory of mind: Understanding of story characters’ thoughts and feelings by able autistic, mentally handicapped, and normal children and adults. Journal of Autism and Developmental Disorders, 24, 129–154.
TERRI COOPER SWANSON SOCIAL GAZE Social gaze is the movement of one’s eyes for a communicative purpose. This movement can involve ‘‘eye-to-eye’’ contact, for the purposes of reading body language and facial expression, or ‘‘eye-to-object’’ contact, also referred to as joint attention. Joint attention involves making eye contact with a person and then shifting the focus of the eyes to a third party (object or person). Abnormalities in social gaze are among the earliest pronounced symptoms of autism, with 1-year-old infants with autism tending to make less eye-to-face contact than typically developing infants. JEANNE HOLVERSTOTT SOCIAL PLAY Children with autism spectrum disorders present distinct problems in developing social play with both adults and other children (APA, 2000). Social play reflects the ability to coordinate mutually enjoyed activities with another person. Building on early capacities for joint attention (e.g., following another’s gaze to share the experience of observing an object or event), imitation, and emotional responsiveness, social play increases in frequency, duration, and complexity with growing exposure to peers. Examples of social play include: onlooker (e.g., watching peers at play), parallel play (e.g., playing independently beside peers), common focus (e.g., reciprocal play with one or more peers), and common goal (e.g., cooperative play with one or more peers; for reviews, see Jordan, 2003; Wolfberg, 1999, 2003). See also integrated play groups; play-oriented therapies; social skills training. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual for mental disorders (4th ed., text rev.). Washington, DC: Author. Jordan, R. (2003). Social play and autistic spectrum disorders. Autism: The International Journal of Research and Practice, 7(4) 347–360. Wolfberg, P. J. (1999). Play and imagination in children with autism. New York: Teachers College Press, Columbia University. Wolfberg, P. J. (2003) Peer play and the autism spectrum: The art of guiding children’s socialization and imagination. Shawnee Mission, KS: Autism Asperger Publishing Company.
PAMELA WOLFBERG SOCIAL SCRIPTS A social script is an intervention used with children with autism spectrum disorders (ASD) to improve their social and communication skills (Simpson, Myles, & Ganz, in press). Such scripts are designed to give children with ASD the words or phrases they should use in a variety of contexts. This intervention is appropriate for children with autism as an intervention that accommodates for memory and social skills deficits common in autism. Social scripts have been used to improve imitation (Pierce & 349
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Schreibman, 1995) and social (Johnston, Nelson, Evans, & Palazolo, 2003; Krantz & McClannahan, 1998) and communication (Krantz & McClannahan, 1993; Sarokoff, Taylor, & Poulson, 2001) skills in individuals with ASD. Social scripts have also resulted in reduced problem behaviors (Sasso, Melloy, & Kavale, 1990). STEPS IN IMPLEMENTING SOCIAL SCRIPTS Ganz, Cook, and Earles-Vollrath (in press) recommend the following steps when implementing social scripts. First, a sociocommunicative skill or skills should be chosen (e.g., asking questions for information), as well as settings and scenarios in which the skills should be demonstrated. These should be skills and scenarios that cause the individual with ASD difficulty. Then, a script or scripts should be written including specific phrases the student should learn. Drawings may be included or used in place of the written words if the student is unable to read or unable to read fluently. Prior to implementing the script in the difficult setting, the script or scripts should be taught to the student until he or she can read it aloud fluently and without prompts. At this time, the script may need to be adjusted for ease of reading. Next, the script or scripts should be implemented during the difficult activity or setting. The script may be given to the student to check off or an adult (e.g., teacher, parent) may hold phrases up periodically to be read aloud. Finally, the script should be faded (e.g., remove portions of the script from the end to the beginning). EXAMPLE OF A SOCIAL SCRIPT The following is an example of a social script intervention with Sarah, a 10-yearold fifth-grader with high-functioning autism. Sarah infrequently used spontaneous social speech and preferred to draw alone. Her teacher decided to implement social scripts to increase her social initiations. Specifically, they decided to work on increasing positive comments and offers to share during art class, which took place once a week. Sarah’s teacher wrote a script including a variety of phrases she could use during art, such as, ‘‘I like your drawing of a ____,’’ and, ‘‘Do you want the purple paint?’’ These phrases were put on note cards on a ring for Sarah to carry with her. Because Sarah could read, the script did not include pictures. Sarah’s teacher then spent three 15-minute sessions practicing the script with her until she was able to read the phrases independently, fluently, and with affect. Then, the script was given to Sarah to use during art class. The first few classes during which the script was used, her teacher reminded her beforehand and periodically pointed to the cards to remind Sarah to read them aloud. Finally, once Sarah used the scripts independently in art class, they were faded by cutting the note cards starting at the end of the sentence, and gradually removing more of each sentence until no words were visible. At that point the script was removed and a new skill and scenario was targeted. See also social skills training; visual strategies. REFERENCES Ganz, J. B., Cook, K. E., & Earles-Vollrath, T. L. (in press). How to write and implement social script interventions with learners with autism spectrum disorders. Austin, TX: Pro-Ed. Johnston, S., Nelson, C., Evans, J., & Palazolo, K. (2003). The use of visual supports in teaching young children with autism spectrum disorder to initiate interactions. Augmentative and Alternative Communication, 19(2), 86–103.
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SOCIAL SKILLS TRAINING Krantz, P., & McClannahan, L. (1993). Teaching children with autism to initiate to peers: Effects of a script-fading procedure. Journal of Applied Behavior Analysis, 26(1), 121–132. Krantz, P., & McClannahan, L. (1998). Social interaction skills for children with autism: A script-fading procedure for beginning readers. Journal of Applied Behavior Analysis, 31(2), 191– 202. Pierce, K., & Schreibman, L. (1995). Increasing complex social behaviors in children with autism: Effects of peer-implemented pivotal response training. Journal of Applied Behavior Analysis, 28(3), 285–295. Sarokoff, R. A., Taylor, B. A., & Poulson, C. L. (2001). Teaching children with autism to engage in conversational exchanges: Script fading with embedded textual stimuli. Journal of Applied Behavior Analysis, 34(1), 81–84. Sasso, G. M., Melloy, K. J., & Kavale, K. (1990). Generalization, maintenance, and behavioral co-variation associated with social skills training through structured learning. Behavioral Disorders, 16(1), 9–22. Simpson, R. L., Myles, B. S., & Ganz, J. B. (in press). Efficacious interventions and treatments for learners with autism spectrum disorders. In R. L. Simpson & B. S. Myles (Eds.), Educating children and youth with autism: Strategies for effective practice (2nd ed.). Austin, TX: Pro-Ed.
JENNIFER B. GANZ
SOCIAL SKILLS DEFINED AS SHARING SPACE EFFECTIVELY WITH OTHERS While we use our social skills to share, play with others, interact in discussion and conversation, it is important to realize that we even use our social skills at all the times that we are just sharing space with others. When we enter into a space shared by another person(s), all people(s) should be having a little thought about those around them. The thoughts usually stay ‘‘small’’ and ‘‘routine’’ if people are sharing space effectively and not making people have ‘‘weird thoughts.’’ However, if when sharing space we produce an unexpected social behavior, people can become less comfortable with the person who is doing the ‘‘unexpected’’ social behavior even if no one is speaking to each other in that environment. To consider this more fully, think about how aware each person is of the other when just sharing space on an elevator. If one does it well, then this is one example of using ‘‘good social skills.’’ FURTHER INFORMATION Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Michelle Garcia Winner. Winner, M. (2005). Think social! A social thinking curriculum for school aged students. San Jose, CA: Michelle Garcia Winner.
MICHELLE GARCIA WINNER
AND JAMIE
RIVETTS
SOCIAL SKILLS TRAINING Social skills training refers to instruction or support designed to improve or facilitate the acquisition and/or performance of social skills. Social skills are critical to successful social, emotional, and cognitive development. Social skills have been defined as ‘‘socially acceptable learned behaviors that enable a person to interact with others in ways that elicit positive responses and assist in avoiding negative responses’’ (Elliot, Racine, & Busse, 1995, p. 1009). Effective social skills allow us to elicit positive 351
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reactions and evaluations from peers as we perform socially approved behaviors (Ladd & Mize, 1983). Impairment in social functioning is a central feature of autism spectrum disorder (ASD) and is well documented in the literature (Attwood, 1998; Rogers, 2000). Typical social skill deficits include difficulties with reciprocity, initiating interactions, maintaining eye contact, sharing enjoyment, empathy, and inferring the interests of others. The cause of these skill deficits varies, ranging from inherent neurological impairment (e.g., limbic system dysfunction) to lack of opportunity to acquire skills (e.g., social withdrawal). Regardless of origin, social skill deficits make it difficult for the individual to develop, and keep, meaningful and fulfilling personal relationships. Although social skill deficits are a central feature of ASD, few children receive adequate social skills programming (Hume, Bellini, & Pratt, 2005). This is a troubling reality, especially considering that the presence of social impairment may portend the development of detrimental outcomes, such as social failure and peer rejection, possibly leading to anxiety, depression, substance abuse, and other forms of psychopathology (Bellini, 2004; La Greca & Lopez, 1998; Tantam, 2000). Most important, social skill deficits impede the ability to establish meaningful social relationships, which often leads to withdrawal and a life of social isolation. Social skills training should be an integral part of a child’s overall programming. Social skills are primarily acquired through learning that involves observation, modeling, coaching, social problem solving, behavior rehearsal, feedback, and reinforcement-based strategies (Gresham & Elliot, 1990). Two underlying assumptions of all social skills training programs are that individuals can be taught to behave differently, and that they will elicit more positive reactions and evaluations from peers as they acquire and perform more socially approved behaviors (Ladd & Mize, 1983). Gresham and Elliot discuss five factors that contribute to social skills deficits: (a) lack of knowledge, (b) lack of practice or feedback, (c) lack of cues or opportunities, (d) lack of reinforcement, and (e) the presence of interfering problem behaviors. Social skills training programs should identify which factors are contributing to the social skill deficits of the target child and attempt to ameliorate these deficits through programming. SOCIAL SKILLS ASSESSMENT The first step in any social skill training program should consist of a thorough evaluation of the child’s current level of social functioning, including both strengths and weaknesses. The purpose of such assessment is to answer one very basic, yet complicated, question: What is precluding the child from establishing and maintaining social relationships? For most children, the answer takes the form of specific social skill deficits. For others, the answer takes the form of cruel and rejecting peers. And for yet other children, the answer is both. The assessment should involve a combination of observation (both naturalistic and structured), interview (e.g., parents, teachers, playground supervisors), and standardized measures (e.g., behavioral checklists, social skills measures). The skills that are identified during the social skills assessment will be the direct target of the intervention. For more information on social skill checklists specifically designed for children with ASD, see Do-Watch-Listen-Say by Quill (2000), or Building Social Relationships by Bellini (2006). 352
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SOCIAL SKILLS TRAINING STRATEGIES When teaching social skills to children with ASD, it is important to use a large repertoire of strategies. It is also important to teach social skills across a variety of settings, including home, community, classroom, resource room, playground, and therapeutic clinic, and with multiple persons. Thus, the success of a social skills program is dependent upon the cooperation and contribution of both parents (and other family members and caregivers) and professionals (teachers, counselors, speech language pathologists, social workers, occupational and physical therapists, psychologists, physicians, case managers, or many others). A number of important questions must be considered when selecting social skill strategies. For instance, does the strategy target the skill deficits identified in the social assessment? Does the strategy enhance performance? Does the strategy promote skill acquisition? Is there research to support its use? If not, what is the plan to evaluate its effectiveness with the child? Is it developmentally appropriate for the child? In his review of the research, McConnell (2002) concluded that indirect strategies such as arranging the environment to include structured, preferred activities and opportunities for interactions with more socially competent peers can help promote social interactions for young children with ASD. However, these strategies are rarely sufficient in themselves and should be part of comprehensive intervention plans that include more targeted, direct interventions. One example of direct intervention is to specifically teach and reinforce social skills. The use of teacher prompts has also been shown to be an effective way to increase social initiations and duration of interactions in young children (Odom & Strain, 1986). Another well-studied strategy (McConnell, 2002), peer-mediated interventions, involves the use of trained peers to prompt the social interactions of young children with ASD. Furthermore, the use of multiple peer mentors has been found to increase the generalization of these skills to other settings or persons. Various social intervention programs have been designed to facilitate both adult-child and childchild interactions in children with ASD, including pivotal response training, visual cuing, peer-mediated instruction, video modeling, peer mentoring, social scripting, and Social Stories (Rogers, 2000). Social skills interventions should focus on positive behaviors and use methods that can be easily incorporated into the classroom curriculum. Social skills training strategies can typically be separated into one of two categories: (a) strategies that teach new skills (skill acquisition) and (b) strategies that enhance the performance of existing skills (performance enhancement). Examples of skill acquisition strategies include social stories, video modeling, social problem solving, teaching social rules, and social scripting. Performance enhancement strategies include reinforcement strategies, environmental modifications, peer-mediated interventions, and social priming. Social skills training can focus on early social-communicative skills, play skills, initiations and responses, and other prosocial skills. RESEARCH ON SOCIAL SKILLS TRAINING Research has shown that traditional social skills training programs are only minimally effective in teaching social skills to children and adolescents (Gresham, Sugai, & Horner, 2001; Quinn, Kavale, Mathur, Rutherford, & Forness, 1999). Quinn et al. 353
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(1999) found that social skills programs that targeted specific social skills (turn taking, social initiations, etc.) were more effective than programs that focused on more global social functioning for larger groups of students, such as ‘‘friendship’’ skills, cooperation, and so on. The researchers concluded that effective social skill programs must be adapted to fit the needs of the child. Too often the opposite logic is used. We force children to ‘‘fit’’ into the social skill strategy or strategies that we have selected for them. After reviewing numerous studies on social skills training, Gresham et al. (2001) recommended that social skills training be implemented more frequently and more intensely than what is typically the case. They concluded that ‘‘thirty hours of instruction, spread over 10–12 weeks is not enough’’ (p. 341) and that the social skill instructional strategies should match the type skill deficits. Matching instructional strategies to the type of skill deficit exhibited by the child is a key component of successful social skills programs. PLAN FOR GENERALIZATION A critical aspect of all social skills programs is a plan for generalization, or transfer of skills. Generalization refers to performance of skills across settings, persons, situations, and time. The ultimate goal of social skills training is to teach the child to interact successfully with peers in natural environments. From a behavioral perspective, the inability to generalize a skill or behavior is a result of too much stimulus control. That is, the child only performs the skill or behavior in the presence of a specific stimulus (person, prompt, directives, etc.). For instance, the child may respond to the social initiations of other children, but only if his mother is there to prompt him. If mom is not available, he does not respond. Therefore, the skill has not been generalized. Several strategies may be used to facilitate generalization of social skills, including (a) reinforcing the performance of social skills in the natural environment, (b) training with multiple persons and in multiple settings, (c) ensuring the presence and delivery of natural reinforcers for the performance of social skills, (d) practicing the skill in the natural environment, (e) fading prompts as quickly as feasible, (f) providing multiple exemplars for social rules and concepts, and (g) teaching self-monitoring strategies. SOCIAL ACCOMMODATION VERSUS SOCIAL ASSIMILATION Prior to selecting intervention strategies, it is important to consider the concepts of social accommodation and social assimilation. Accommodation, as it relates to social skills instruction, refers to the act of modifying the physical or social environment to promote positive social interactions. Examples include training peer mentors to interact with the child throughout the school day, conducting autism awareness training or sensitivity training for classmates, and signing the child up for various group activities, such as Little League, Boy or Girl Scouts, and so on. Whereas accommodation addresses changes in the environment, assimilation focuses on changes in the child. Specifically, it refers to instruction that facilitates skill development that allows the child to be more successful in social interactions. By their nature, social accommodations enhance social performance, and social assimilation involves promoting skill acquisition. The key to a successful social skills training program is to address both accommodation and assimilation. For example, providing ample opportunity for the child to interact with others without providing him/her with the skills necessary to be successful in 354
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those interactions may lead to failure and frustration. Similarly, providing skill instruction (assimilation) without modifying the environment to be more accepting of the child with ASD also sets the child up for failure. This happens the moment an eager child with ASD tries out a newly learned skill on a group of nonaccepting peers. Thus, the key is to teach skills and modify the environment. See also social scripts. REFERENCES Attwood, T. (1998). Asperger’s syndrome: A guide for parents and professionals. Philadelphia: Jessica Kingsley Publishers. Bellini, S. (2004). Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19(2), 78–86. Bellini, S. (2006). Building social relationships: A systematic approach to teaching social interaction skills to children and adolescents with autism spectrum disorders and other social difficulties. Shawnee Mission, KS: Autism Asperger Publishing Company. Elliott, S. N., Racine, C. N., & Busse, R. T. (1995). Best practices in preschool social skills training. In A. Thomas & J. Grimes (Eds.), Best practices in school psychology (3rd ed., pp. 1009–1020). Washington, DC: NASP. Gresham, F. M., & Elliot, S. N. (1990). Social skills rating system–manual. Circle Pines, MN: American Guidance Service. Gresham, F. M., Sugai, G., & Horner, R. H. (2001). Interpreting outcomes of social skills training for students with high-incidence disabilities. Teaching Exceptional Children, 67, 331–344. Hume, K., Bellini, S., & Pratt, C. (2005). The usage and perceived outcomes of early intervention and early childhood programs for young children with autism spectrum disorder. Topics in Early Childhood Special Education, 25(4), 195–207. Ladd, G. W., & Mize, J. (1983). A cognitive-social learning model of social skill training. Psychological Review, 90, 127–157. La Greca, A. M., & Lopez, N. (1998). Social anxiety among adolescents: Linkages with peer relations and friendships. Journal of Clinical Child Psychology, 26, 83–94. McConnell, S. R. (2002). Interventions to facilitate social interaction for young children with autism: Review of available research and recommendations for educational intervention and future research. Journal of Autism and Developmental Disorders, 32, 351–372. Odom, S. L., & Strain, P. S. (1986). A comparison of peer-initiation and teacher-antecedent interventions for promoting reciprocal social interaction of autistic preschoolers. Journal of Applied Behavior Analysis, 19, 59–71. Quill, K. (2000). Do-watch-listen-say: Social and communication intervention for children with autism. Baltimore: Brookes Publishing Co. Quinn, M. M., Kavale, K. A., Mathur, S. R., Rutherford Jr., R. B., & Forness, S. R. (1999). A meta-analysis of social skills interventions for students with emotional and behavioral disorders. Journal of Emotional and Behavioral Disorders, 7, 54–64. Rogers, S. (2000). Interventions that facilitate socialization in children with autism. Journal of Autism and Developmental Disorders, 30, 399–409. Tantam, D. (2000). Psychological disorder in adolescents and adults with Asperger syndrome. Autism, 4, 47–62.
SCOTT BELLINI, ANDREA HOPF,
AND JESSICA
KATE PETERS
SOCIAL STORIES A Social Story describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. Social Stories were originally developed to share social information with children with autism spectrum disorders (ASD) that most people take for granted, with each Story 355
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patiently describing the details of an often unspoken social code. For example, a Social Story may outline the general routine of a birthday party, explain the thoughts, statements, and actions of children at the party, or the rationale behind expectations for the behavior of those attending the party. Social Articles (Gray, 1999) are similar to Social Stories, but tailored for review and use by adolescents and young adults. Thus, Social Articles use (a) the thirdperson perspective instead of first-person, (b) advanced vocabulary, and (c) in many cases columns like a newspaper article, to share information. For many children and adults with ASD, Social Stories and Social Articles have resulted in improved responses to situations or understanding of concepts that were previously problematic for them. Most are written by parents and professionals, and people with ASD of all ages are their most frequent audience. First described by Gray & Garand in 1993, Social Stories have been updated and expanded upon in subsequent articles and book chapters (Gray, 1995, 1998a, 1998b, 2000a; 2000b; Gray & White, 2000) The continually expanding use and popularity of the approach created a need for an updated, detailed delineation of what is—and is not—a Social Story. Thus, many stories were being developed for students with ASD, and referred to by their authors as Social Stories, though relatively few adhered to the defining criteria. Concern for students’ social and emotional safety when exposed to unauthorized use of the approach, and concern for its overall quality and effectiveness, resulted in an expansion and reorganization of the 10 defining characteristics, referred to as Social Stories 10.0 (Gray, 2004). Currently, Social Stories 10.0 clearly distinguishes Social Stories from fiction and traditional nonfiction, task analyses, social scripts, or other visual strategies. First gaining credibility in practice, numerous studies have been conducted on Social Stories, the majority of them reporting positive results. New studies are continually being launched to improve understanding of the approach and answer questions that emerge with continued practice. Though the original guidelines and the new defining criteria are based on the learning characteristics of people with ASD, experience indicates that Social Stories may also be helpful for individuals with other impairments, as well as for those who are developing normally. REFERENCES Gray, C. (1995). Teaching children with autism to ‘‘read’’ social situations. In K. A. Quill (Ed.), Teaching children with autism: Strategies to enhance communication and socialization (pp. 219–241). New York: Delmar Publishers. Gray, C. (1998a). Social Stories and comic strip conversations. In E. Schopler, G. Mesibov, & L. Kunce (Eds.), Asperger Syndrome or high-functioning autism? (pp. 167–198). New York: Plenum Press. Gray, C. (1998b). The advanced social story workbook. The Morning News, 10(2), 1–24. Gray, C. (1999). Gray’s guide to compliments. The Morning News, 11(1), 1–20. Gray, C. (2000a). Writing social stories with Carol Gray [Video]. Arlington, TX: Future Horizons. Gray, C. (2000b). Writing social stories with Carol Gray: Workbook to accompany video. Arlington, TX: Future Horizons. Gray, C. (2004). Social Stories 10.0: The new defining criteria and guidelines. The Jenison Autism Journal, 16(1), 2–21.
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SOCIAL VALIDITY Gray, C. A., & Garand, J. (1993). Social Stories: Improving responses of individuals with autism with accurate social information. Focus on Autistic Behavior, 8, 1–10. Gray, C. A., & White, A. L. (2000). My social stories book. London: Jessica Kingsley Publishers.
FURTHER INFORMATION The Gray Center: www.TheGrayCenter.org.
CAROL GRAY
SOCIAL THINKING Social thinking is a user-friendly term for social cognition. Social cognition is one of many different forms of intelligence that each of us has to a greater or lesser extent that helps to define how we interpret, relate, and respond to the people and information around us (written, spoken, media, etc.). In relation to others, there are multiple and complex factors that combine synergistically to create communicative competence. Factors related to social thinking involve reading people’s gestures, body language, tone of voice, facial expressions, breathing patterns, and intended language meaning in an environmental context to glean the overall communicative intention of the message. Social thinking is active in every situation where two people share (even outside of language-based communication); and it is actively present in the classroom environment. There is no single moment in a classroom when social thinking does not need to be actively considered. An example of teaching by ‘‘social thinking methods’’ includes teaching ‘‘eyecontact’’ to students who lack this skill. If we are teaching a child eye contact by teaching him or her to use the ‘‘social skill,’’ then we simply remind the child to ‘‘look at me.’’ If we are teaching the child the concept of eye contact through ‘‘social thinking methods,’’ then we help the child to learn that eye-gaze direction helps the ‘‘listener’’ to understand what others might be thinking about based on where they are looking. The student (i.e., ‘‘listener’’) is then taught to ‘‘think with his or her eyes’’ to consider what others might be looking at or thinking about. The listener can then be cued to think with his or her eyes to better understand why he or she should look to the face of another person. FURTHER INFORMATION Winner, M. (2002). Thinking about you thinking about me. San Jose, CA: Author. Winner, M. (2005). Think social! A social thinking curriculum for school aged students. San Jose, CA: Michelle Garcia Winner. Winner, M. (2005). Worksheets! For teaching social thinking and related skills. San Jose, CA: Michelle Garcia Winner. Social Thinking: www.socialthinking.com.
MICHELLE GARCIA WINNER
AND JAMIE
RIVETTS
SOCIAL VALIDITY Social validity is the perceived worth of research and its results. JAN L. KLEIN
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SOMATOSENSORY Somatosensory refers to the sensory receptors on the skin’s surface, which help to determine where the body ends and where the world begins. The somatosensory system is also referred to as the tactile system. KELLY M. PRESTIA
SPECIAL DAY SCHOOL OR ALTERNATIVE SCHOOL Special day school/alternative school programs are settings where students receive educational and related services for more than 50 percent of their school day. Multiple disabilities represent the disability category most often represented within special day school or alternative school programs. KATHERINE E. COOK
SPECT. See Positron Emission Tomography
SPEECH DELAY Speech delay refers to a delay in the development or use of the mechanisms that produce speech. Speech, which is distinct from language, refers to the actual process of making sounds, using such organs and structures as the lungs, vocal cords, mouth, tongue, teeth, etc. Because language and speech are two independent developmental stages, delays may present independently. JEANNE HOLVERSTOTT
SPEECH LANGUAGE PATHOLOGIST Speech language pathologists (SLP) are trained professionals who work in hospitals, private clinics, and the school system diagnosing speech/language disorders, preparing for, and providing direct services. Speech language pathologists are trained to diagnose and provide services for students with speech impairments including: fluency disorders, articulation and phonological disorders, and voice disorders. Language disorders focused on by speech language pathologists include aphasia and language delays. These services can be provided in individual, small, or large group settings. Additionally, many SLPs focus on pragmatics and social skill instruction within individual, small, and group settings. In order to practice as a speech pathologist, a minimum of a master’s degree, passage of a national exam, a minimum of 400 (325 at the graduate level) supervised clinical hours, and the completion of a clinical fellowship year must be completed (American Speech-Language-Hearing Association, n.d.). The American SpeechLanguage Hearing Association (ASHA) is the organization that awards the Certificate of Clinical Competence (CCC) upon successful completion of these requirements. The addition of a state license to practice may be required depending on that specific state. See also fluency; social skills training. 358
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REFERENCE American Speech-Language-Hearing Association. (n.d.). Academic, Clinical, and Exam Standards for the Certificate of Clinical Competence (CCC). Retrieved September 22, 2006, from www.asha.org.
KATHERINE E. COOK
AND
LYNN DUDEK
SPEECH THERAPY Speech therapy, also known as speech pathology or speech-language pathology, is the diagnosis and treatment of communication and swallowing disorders. Speech pathologists (or speech therapists) diagnose, treat, and prevent communication disorders. In addition to diagnosing and treating disorders, speech pathologists are responsible for programs that stress the prevention of certain disorders—such as a vocal hygiene program to avoid the development of poor vocal behaviors (yelling, vocal abuse). Communication encompasses many areas. Language skills refer to syntax (grammar), semantics (vocabulary), and pragmatics (language use and social skills). Speech skills mean articulation (pronunciation), voice (hoarseness, resonance), and fluency (stuttering). Swallowing ability refers to the intake, manipulation (chewing), movement, and swallowing of liquids and solids. The need for services from a speech pathologist may be for a variety of reasons including: ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥
Developmental delays (not developing speech and language) Articulation errors Motor planning disorders (dyspraxia, apraxia) Accident or injury Stroke Traumatic brain injury Cancer Autism spectrum disorders Cerebral palsy Congenital disorders Birth injuries Trauma (car accident) Feeding/swallowing disorders
A speech pathologist may use many different methods to develop or redevelop the skills necessary for effective communication and swallowing. These may include: ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥
Play-oriented therapy Articulation practice Oral-motor therapy Articulation ‘‘drills’’ Reading readiness Memory activities Augmentative and alternative communication devices Sign language Picture Exchange Communication System (PECS) Homework
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Speech pathologists work in a variety of settings including private practice, nursing homes, schools, rehabilitation centers, hospitals, and universities. Along with diagnosing and treating communication disorders, speech pathologists are responsible for diagnosing and treating disorders associated with feeding and swallowing. Speech pathologists may see patients/clients in a variety of settings including individual and/or group treatment. In a school setting, group therapy is utilized to take advantage of peer modeling and generalization. In other settings, such as a hospital or clinic, they may utilize individual treatment. One of the growing areas of treatment for speech pathologists is in the area of pragmatics/social language and social skills training. As children with autism spectrum disorders grow on caseloads, so too do the number of social skills groups. It is important to remember that the child, the family, and the speech pathologist are all partners in the therapy process. It is vitally important that the family be involved in creating goals and the speech pathologist helps the family learn how to practice at home. Only going to therapy once or twice a week will not be of benefit unless home programs are instituted as well. FURTHER INFORMATION Social Thinking: www.socialthinking.com.
LYNN DUDEK SPLINTER SKILLS Splinter skills (also called islets of ability or islands of precocity) are abilities in one or several areas that a person is quite talented in relative to their overall cognitive ability. For example, an individual may be cognitively impaired, yet have a photographic memory or be able to play a song on a musical instrument perfectly after only hearing it once. FURTHER INFORMATION Frith, U. (1989). Autism: Explaining the enigma. Cambridge, MA: Blackwell Publishers. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250. Scheuermann, B., & Webber, J. (2002). Autism: Teaching does make a difference. Belmont, CA: Wadsworth Group.
PAUL G. LACAVA
SPONTANEOUS PLAY A lack of spontaneous play appropriate to developmental level is a defining feature of autism spectrum disorders (APA, 2000). Spontaneous play reflects the child’s active engagement in intrinsically motivating activity that is self-generated and freely chosen. Spontaneous play manifests in both symbolic and social forms, which transform in form, function, and degree of complexity as children develop (Boucher & Wolfberg, 2003; Libby, Powell, Messer, & Jordan, 1998; Wolfberg, 1999, 2003). Spontaneous forms of play within the symbolic dimension may include: sensory exploration of objects (e.g., spinning the wheels of a toy car), functional play with objects (e.g., rolling a toy car on a surface or placing a cup on a saucer), and pretending to do or be someone else (e.g., holding a tea party with dolls). Spontaneous forms 360
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of play within the social dimension may include: onlooker (e.g., watching peers at play), parallel play (e.g., playing independently beside peers), common focus (e.g., reciprocal play with one or more peers), and common goal (e.g., cooperative play with one or more peers; Wolfberg, 2003). See also integrated play groups; play-oriented therapies. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Boucher, J., & Wolfberg, P. J. (2003). Editorial: Special issue on play. Autism: The International Journal of Research and Practice, 7(4), 339–346. Libby, S., Powell, S., Messer, D., & Jordan, R. (1998). Spontaneous play in children with autism: A reappraisal. Journal of Autism and Developmental Disorders 28, 487–497. Wolfberg, P. J. (1999). Play and imagination in children with autism. New York: Teachers College Press, Columbia University. Wolfberg, P. J. (2003). Peer play and the autism spectrum: The art of guiding children’s socialization and imagination. Shawnee Mission, KS: Autism Asperger Publishing Company.
PAMELA WOLFBERG
STANDARD DEVIATION In statistics, standard deviation (SD) is a measure of variability. The SD is the average distance that each score, in a distribution of scores, deviates from the average of all scores (also known as the mean). The SD tells how far scores vary and how they disperse around the average score. FURTHER INFORMATION Kotz, S., & Johnson, N. L. (Eds.). (1988). Encyclopedia of statistical sciences, Vol. 8. New York: John Wiley & Sons. Salkind, N. J. (2005). Exploring research (6th ed.). Upper Saddle River, NJ: Prentice Hall.
PAUL G. LACAVA
STANDARDIZATION Standardization is the process of applying a consistent set of procedures for designing, administering, and scoring an assessment in order to ensure that all students are assessed under the same conditions and are not affected by different conditions. Standardization also ensures that optimal results are obtained. FURTHER INFORMATION Wrightslaw (n.d.). Glossary of assessment terms. Retrieved August 8, 2006, from http:// www.wrightslaw.com/links/glossary.assessment.htm.
THERESA L. EARLES-VOLLRATH
STANDARDIZATION SAMPLE A standardization sample is a large group of test takers who represent the population for which the test is intended and to which comparisons can be made. Knowledge of the standardization sample, also referred to as the norm group, is important when using standardized or norm-referenced assessment measures. 361
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FURTHER INFORMATION Pierangelo, R., & Giuliani, G. (1998). Special educators’ complete guide to 109 diagnostic tests: How to select and interpret tests, use results in IEPs, and remediate specific difficulties. West Nyack, NY: Center for Applied Research in Education. Salvia, J., & Ysseldyke, J. E. (2007). Assessment: In special and inclusive education (10th ed.). Boston: Houghton Mifflin Company.
THERESA L. EARLES-VOLLRATH STANDARDIZED TESTS Standardized tests are a form of measurement that has been normed against a specific population. These assessment measures are uniformly developed, administered, and scored according to very specific procedures. A variety of standardized scores are calculated for comparison against the performance of the norm group. See also norm-referenced assessment. FURTHER INFORMATION Pierangelo, R., & Giuliani, G. (1998). Special educators’ complete guide to 109 diagnostic tests: How to select and interpret tests, use results in IEPs, and remediate specific difficulties. West Nyack, NY: Center for Applied Research in Education.
THERESA L. EARLES-VOLLRATH STANDARD SCORE Standard scores are raw test scores that have been converted to a scale with equal means and standard deviations. These scores allow ‘‘raw scores’’ on different assessments to be compared, allowing one to determine where a student’s score falls in comparison to his/her overall ability, to another person, or to a group. FURTHER INFORMATION Salvia, J., & Ysseldyke, J. E. (2007). Assessment: In special and inclusive education (10th ed.). Boston: Houghton Mifflin Company. Taylor, R. L. (2006). Assessment of exceptional students: Educational and psychological procedures (7th ed.). Needham Heights, MA: Allyn and Bacon.
THERESA L. EARLES-VOLLRATH STANFORD-BINET INTELLIGENCE SCALES–FIFTH EDITION The Stanford-Binet Intelligence Scales–Fifth Edition (SB5; Roid, 2005) is individually administered to individuals ranging in ages from 2 to 90+ as an assessment of intelligence and cognitive abilities. The SB5 allows assessors to compare nonverbal and verbal performance, which is beneficial when evaluating for a learning disability. SB5 aids in determining special needs and assists with identifying and describing individuals who qualify as learning disabled, gifted and talented, mentally retarded, ADHD, speech and language delayed, traumatic brain injured, and/or autistic. REFERENCE Roid, G. H. (2005). Stanford-Binet Intelligence Scales–Fifth Edition. Rolling Meadows, IL: Riverside Publishing Company.
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STEREOTYPIC BEHAVIOR Stereotypic behaviors may include hand waving, rocking, playing with hands, fiddling with fingers, twirling objects, head banging, self-biting, or hitting various parts of one’s own body (APA, 2000). In addition, individuals may use an object in performing these behaviors. REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual for mental disorders (4th ed., text rev.). Washington, DC: Author.
HYO JUNG LEE STIMULANT MEDICATIONS Stimulant medications are a very commonly used psychotropic medication. Ritalin, Adderall, and Concerta are examples of this class of drugs. Stimulants work by triggering the level of activity in the central nervous system. Stimulants are often prescribed to persons with autism spectrum disorders (ASD) to help improve attention, decrease hyperactivity, restlessness, and impulsivity, and for other behavioral concerns. Some common side effects include reduction in appetite and mild insomnia. Many stimulants are produced in regular and sustained-release forms. Individuals with ASD may benefit from stimulants, but research has shown that those without autism who take stimulants respond at a higher rate. FURTHER INFORMATION Aman, M. G., Lam, K. S., & Collier-Crespin, A. (2003). Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio. Journal of Autism and Developmental Disorders, 33, 527–534. Quintana, H., Birmaher, B., Stedge, D., Lennon, S., Freed, J., Bridge, J., et al. (1995). Use of methylphenidate in the treatment of children with autistic disorder. Journal of Autism & Developmental Disorders, 25, 283–294. Tsai, L. (2000). Children with autism spectrum disorder: Medicine today and in the new millennium. Focus on Autism and Other Developmental Disabilities, 15, 138–145. Tsai, L. (2002). Taking the mystery out of medications in autism/Asperger syndromes: A guide for parents and non-medical professionals. Arlington, TX: Future Horizons. Werry, J. S. (2001). Pharmacological treatments of autism, attention deficit hyperactivity disorder, oppositional defiant disorder, and depression in children and youth: Commentary. Journal of Clinical Child Psychology, 30, 110–113.
PAUL G. LACAVA STIMULUS Stimulus refers to a specific element in the environment that influences behavior. It is normally used to refer to something that is being changed or administered in order to impact behavior, or to find what its impact is on the behavior of an individual. Stimuli can be internal or external, although the focus within applied behavior analysis is the study and manipulation of external stimuli. However, some interventions for individuals with autism spectrum disorders also attempt to teach recognition of internal stimuli and self-control or self-regulation, in light of such stimuli. 363
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FURTHER INFORMATION Cooper, J. O, Heron, T. E, & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Pearson Education.
KATIE BASSITY STIMULUS CONTROL A behavior is said to be under stimulus control when that behavior is more probable to occur after a particular stimulus than under other normal circumstances (Halle & Holt, 1991). The reason for this control is that the stimulus that produces higher rates of behavior also is followed by higher rates of reinforcement (Cooper, Heron, & Heward, 1996). Once it has been associated with the behavior, the stimulus or cue may then induce the response (Alberto & Troutman, 1999). For example, a child knows how to walk out of the classroom, but it would be under stimulus control if the child does this automatically during a fire drill. Likewise, if a parent or teacher often gives in to tantrums, it is likely that a child will throw more tantrums in his or her presence in the future. REFERENCES Alberto, P. A., & Troutman, A. C. (1999). Applied behavior analysis for teachers (p. 20). Upper Saddle River, NJ: Merrill. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall. Halle, J. W., & Holt, B. (1991). Assessing stimulus control in natural settings: An analysis of stimuli that acquire control during training. Journal of Applied Behavior Analysis, 24, 579–589.
JESSICA KATE PETERS
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TARA MIHOK
STIMULUS OVERSELECTIVITY Stimulus overselectivity, also called restricted stimulus control, is attention being given to a limited number of stimuli, or features of a stimulus, in a given situation. For example, an individual may identify any red fruit as an apple and not recognize a green apple as an apple. This is because they have learned to identify an apple based on one feature, ignoring the other components that make an apple an apple. This can also apply to only attending to one piece of visual information being presented or attending only to visual information when it is accompanied by oral directions. See also stimulus control. KATIE BASSITY STORYMOVIES A Storymovie (Gray & Shelley, 2006) is a Social Story (Gray & Garand, 1993) illustrated with a short (2–6 minutes), professionally developed movie shot on location, which merges descriptions of social concepts and skills with footage of live situations. Although developed specifically for individuals with autism spectrum disorders (ASD) to help them understand the interactions and situations that surround them, Storymovies may be useful with other audiences as well. In all Storymovies, a blackand-white freeze frame—that frequently stills an important social cue—appears with an announcer reading superimposed text. This is the Story that describes what is 364
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occurring and why. When the announcer finishes reading the segment, the action continues. Storymovies require no specialized training to implement and are equally userfriendly in the hands of parents or professionals. In a school or clinical setting, Storymovies may complement a current social curriculum or initiative, and may be used to achieve existing classroom or individual objectives. At home, parents may use Storymovies more informally to illustrate topics that arise in daily conversations or to help them explain important social concepts and skills. Storymovies utilize features that are impossible with other forms of illustration, such as instant replay, slow motion, and relaxing background music. Carefully placed where needed, instant replay and slow motion provide an immediate second opportunity to look for social cues that may occur too fast or elude identification altogether. Background music is optional; a simple click on the DVD menu turns the music on or off. Many of the Storymovies within a chapter use the same movie for illustration. There are two important reasons for this. Working from the same movie introduces new details on a familiar backdrop and focuses attention on the Story to emphasize related ideas within a chapter. To demonstrate the important ties between concepts, ideas covered in one chapter are mentioned and applied in subsequent chapters and DVDs, with new movies as a backdrop. This promotes the generalization of concepts to new contexts, and encourages the retrieval of previous experience and/or information relevant to the current topic. Each Storymovie DVD addresses a specific theme. Storymovies are grouped into chapters that build one or more basic concepts related to that theme. Topics are listed from simpler to more advanced and are designed to be used in sequence. Any Storymovie may also be used in isolation, making it possible to skip a review of topics that are already understood. REFERENCES Gray, C. A., & Garand, J. (1993). Social Stories: Improving responses of individuals with autism with accurate social information. Focus on Autistic Behavior, 8, 1–10. Gray, C.A., & Shelley, M. (2006). [DVD]. Social concepts and skills at school. Columbia, SC: Specialminds Foundation.
FURTHER INFORMATION The Gray Center: www.TheGrayCenter.org. The Special Minds Foundation: www.specialminds.org.
CAROL GRAY
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MARK SHELLEY
STRUCTURED TEACHING (TEACCH) Structured Teaching is a primary component of the Treatment and Education of Autistic and related Communication-Handicapped Children (TEACCH) program’s approach to working with individuals with autism spectrum disorders (ASD). TEACCH is a statewide program that offers support to individuals with ASD and their families in North Carolina. In addition, TEACCH is able to offer support to families and children with ASD around the country and throughout the world through a set of intervention strategies, referred to as Structured Teaching, that are used in 365
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classrooms, at home, and in community-based services to increase the independence and competence of individuals with ASD (Mesibov, Shea, & Shopler, 2005). An underlying principle of Structured Teaching is to match educational practices and daily interventions to the specific way in which people with ASD think and learn (Mesibov & Howley, 2003, chap. 2). Specifically, individuals with ASD display neurological differences that can result in receptive and expressive language difficulties, problems with attending to relevant detail and switching attention, poor organizational skills, distractibility when faced with sensory stimulation, and difficulty with abstract thinking and perspective-taking. In addition, individuals with ASD tend to be visual, rather than auditory learners (Mesibov et al., 2005). Incorporating the distinct learning pattern and thought processes of individuals with ASD, the elements of Structured Teaching include physical organization, the use of schedules, the use of work systems, and the use of visual structure and information. PHYSICAL ORGANIZATION The physical layout of classrooms, homes, and job settings plays an important role in providing visual information that adds meaning to the environment for individuals with ASD (Mesibov & Howley, 2003, chap. 4). That is, the way the furniture, materials, and general surroundings are organized can help clarify expectations and activities and reduce distracting visual and auditory stimulation. Providing individuals with ASD with a neat and orderly environment can increase independence and alleviate anxiety often caused by ambiguity. The degree of physical organization necessary in an environment varies, depending on the needs of the individual with ASD. For younger children or children with more severe needs, more physical structure may be required. This may be created through the strategic placement of furniture to provide natural boundaries and define specific areas within the classroom (Mesibov & Howley, 2003, chap. 2). For example, a teacher can arrange separate and distinctive areas for group work, independent work, play, one-toone teaching, and snack by arranging the furniture in a clear manner (Mesibov & Howley, 2003, chap. 4). These boundaries convey to children with ASD what is expected of them within these particular areas, which can lead to greater independence. Another way to provide clear physical organization is visual cues. That is, different areas of the classroom can be clearly labeled, materials can be color-coded in a meaningful way, and visual prompts can be used to let a student know where to sit (Mesibov et al., 2005). Students with ASD who are included in a general education classroom may require a lesser degree of physical organization. For example, it is often helpful to create a quiet, nonstimulating area within the classroom where the student can go when feeling stressed or frustrated. In addition, for these students, the independent work area should be located in the least stimulating part of the classroom to eliminate distractions, perhaps assigning them to the same seat each day. Finally, a clear place in which to put finished work is helpful for almost all individuals with ASD, as it provides closure on a task and prepares them for the next step. SCHEDULES Schedules are visual cues that tell us what to expect during the day and in what order (Mesibov & Howley, 2003, chap. 5). Schedules are particularly helpful for 366
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individuals with ASD, as they reduce a reliance on language. Visual schedules can also remain accessible, eliminating the need to rely on memory for sequential information. Finally, schedules aid in transitions, which are often the most difficult times of the day for individuals with ASD. Types of Schedules Visual schedules take many forms depending on the level of functioning of the intended user (Mesibov et al., 2005). For more capable individuals, the schedule may be written to match their reading level. For nonreaders, schedules should be in the form of pictures or icons, depending on what makes the most sense to the particular individual. For example, a picture of a paintbrush could symbolize art, a picture of a parent could indicate it is time to go home, or an icon of a table could represent independent work. Icon and picture schedules can be paired with a simple word or phrase for those with emerging reading skills for additional clarity. Finally, object schedules, which provide a one-step indication of what is next, may be used for individuals who require a high degree of concrete structure. Objects must be clear and meaningful, such as using a plate to symbolize lunchtime or a part of a task to symbolize work sessions. The length of the schedule should also be determined based on individual needs. Whereas object schedules typically only present one item at a time, picture and written schedules can provide a sequence of activities in whatever length is most appropriate. Some individuals are most successful with just a few activities on their schedule, while others benefit from seeing a half day or full day of activities on their schedule. The ways in which schedules are manipulated also vary depending on the individual. For example, some schedules require students to remove a picture card to carry with them and match to a corresponding picture card in an area, whereas others simply require the user to cross off or place check marks over completed activities (Mesibov & Howley, 2003, chap. 5). This manner of checking a schedule should be established as a routine to increase independent functioning. It is helpful to not only provide individualized schedules for particular students, but also to provide a general classroom schedule, giving students the most information possible (Mesibov et al., 2005). General classroom schedules should remain similar from week to week, while the individual schedule provides an opportunity to vary activities. Such variation prevents students from becoming too accustomed to a particular routine, which might be difficult to break. WORK SYSTEMS Whereas physical organization and schedules tell an individual where to go and what to expect during the day, work systems explain how to approach particular activities (Mesibov & Howley, 2003, chap. 6). Thus, work systems offer the structure individuals with ASD need to understand what is expected of them when completing a task, remain focused on the task, and work independently. Specifically, work systems convey which tasks students are supposed to complete, how many tasks must be completed, how much progress they have made as they are working, and finally, what happens after they have completed the work. Like physical organization and schedules, work systems are tailored to the level of understanding of the individual with ASD. A work system for the most capable 367
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students might be a written checklist embedded within a schedule (Mesibov & Howley, 2003, chap. 6). The schedule typically tells the individual to go to a particular area, where he will utilize a separate work system to complete the work or tasks within that area. For example, a student with high-functioning autism might benefit from a work system consisting of a written list of tasks, along with materials that correspond with each task. By using this list to cross off items as they are finished, the student has a clear sense of making progress and then finishing (Mesibov et al., 2005). The work system should include information at the end regarding what to do next; this may be as simple as a message reading, ‘‘Check Schedule.’’ For individuals with ASD who have limited language, work systems can use pictures, icons, objects, or colors to convey what is expected. For example, a nonreader might use a work system consisting of separate picture cards attached to a Velcro strip. These pictures cards correspond to a matching picture on a bin that contains the task. The number of bins containing tasks indicates how much work the student must complete. When no more cards remain, the student knows that she has completed the work session. The last card on the Velcro strip should indicate what the student should do next. Such work systems can be used in one-to-one teaching areas until the tasks have been mastered. The work system can then be transferred to an independent work area. Work systems are not only useful in the classroom, but can be helpful in completing everyday activities, such as brushing teeth, preparing a sandwich, establishing a routine for riding the bus, or shopping in the community (Mesibov et al., 2005). VISUAL STRUCTURE AND INFORMATION As mentioned before, individuals with ASD display visual strengths. Visual information provides clarity and meaning, which increases understanding, success, and independence. In contrast, tasks that rely solely on language-based information tend to be confusing for a person with ASD. Three components of visual structure will be discussed in this section: visual clarity, visual organization, and visual instructions. Visual Clarity Visually clarifying important information for individuals with ASD can accommodate for their difficulty in recognizing relevant information. Rather than including an excessive number of materials, which can cause confusion regarding what needs to be done, work areas can be clarified by presenting tasks with a limited amount of materials (Mesibov et al., 2005). Further, information within tasks can be clarified by highlighting important instructions or putting a tab on an important reference page within a textbook (Mesibov & Howley, 2003, chap. 2). Similarly, a more basic sorting task could include two distinctly different colors that are to be sorted, such as red and green, to highlight the purpose of the task (Mesibov et al., 2005). Visual Organization Individuals with ASD often prefer neat and orderly environments and are easily distracted by extraneous materials or disorganized work areas. Furthermore, they often lack the ability to organize materials themselves. Visual organization refers to the distribution and stabilization of materials, which provides an orderly environment and clarifies what is expected (Mesibov & Howley, 2003, chap. 2). For example, in a 368
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sorting task involving several materials, individuals with ASD have a greater understanding of the task if the materials are distributed in containers rather than spread out across the table. Thus, a task consisting of separating red from blue fish could be presented with a container holding all the materials to be sorted, an additional empty container labeled ‘‘Red Fish,’’ and another empty container labeled ‘‘Blue Fish.’’ This level of organization provides the meaning and clarity needed for an individual with ASD to understand the task and complete it independently. Visual Instructions Finally, visual instructions are essential in providing meaning for most individuals with ASD (Mesibov & Howley, 2003, chap. 2). Individuals with ASD often benefit from a jig, or visual representation, of where materials belong or how a task is to be completed. For example, a jig can provide a visual depiction of how to set a table. Visual instructions not only utilize the strong visual perceptual skills of individuals with ASD, but also support the development of flexibility. That is, visual instructions allow individuals with ASD to learn the routine of relying on instructions, rather than learning a rigid routine of how to perform a particular task, which will not generalize to other tasks and can be hard to break. Overall, Structured Teaching incorporates the strengths of individuals with ASD, such as their visual perception skills, while accommodating for weaknesses, such as poor organization and receptive language, difficulty determining relevant information, and problems with transitions. Not only is Structured Teaching useful for teaching academic or functional daily living skills, it can be helpful in teaching communication, social, and leisure activities. Used across many different settings such as the school, home, and community, these intervention strategies provide the organization and structure needed for individuals with ASD to understand their environments and our expectations more fully, and to function more independently and successfully. REFERENCES Mesibov, G., & Howley, M. (2003). Accessing the curriculum for pupils with autistic spectrum disorders. London: David Fulton Publishers. Mesibov, G. B., Shea, V., & Shopler, E. (2005). The TEACCH approach to autism spectrum disorders. New York: Kluwer Academic/Plenum Publishers.
SIGNE M. BOUCHER
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GARY B. MESIBOV
STUDENT SOCIAL ATTRIBUTION SCALE (SSAS) The Student Social Attribution Scale (SSAS; Bell & McCallum, 1995) measures a student’s awareness of the reason(s) behind school-related success and failure. The questionnaire includes 30 written scenarios that illustrate examples of school success and failure that are followed by four possible causes including ability, chance, effort, and task difficulty. The participant is required to identify how often these causes apply to him or her. The most current version of the SSAS is made up of 16 subscales. A shorter 12-scenario version is also available. REFERENCE Bell, S. M., & McCallum, R. S. (1995). Development of a scale measuring student attributions and its relationship to self-concept and social functioning. School Psychology Review, 24, 271–286.
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FURTHER INFORMATION Barnhill, G. (2001). Social attributions and depression in adolescents with Asperger syndrome. Intervention in School and Clinic, 16(1), 46–53.
AMY BIXLER COFFIN SUPPLEMENTAL SECURITY INCOME (SSI) One program that individuals with autism spectrum disorders may access is Supplemental Security Income (SSI), which is a program of the federal government designed to provide enough personal income each month to subsidize basic needs of food, clothing, and shelter. Generally speaking, eligibility is reserved for the aged and disabled who have little or no income and less than $2,000.00 in assets. SSI is a means-tested program, which means that there are income guidelines that include the parents if the child is under age 18. The means-test is also a consideration when estate planning because if the disabled individual receives a sizeable inheritance, it is possible that would jeopardize their eligibility for further SSI payments. It is also possible to work while receiving SSI benefits, and your local Social Security Office should be able to guide you as to the amount of employment income you may have so that you do not accidentally forfeit your program eligibility. IQ and previous employment are also taken into consideration when determining eligibility; however, once you are deemed eligible for SSI it is also possible that you will qualify for food stamps, Medicaid or Medicare. Even though SSI is a federal program, there are specific rules for income or benefit caps that vary from state to state. The best way to get started with the application process is to use the Web site provided by the Social Security Administration, which is http:// www.socialsecurity.gov/pubs/11000.html or the toll-free phone line at 1-800-772-1213. SHERRY MOYER SUPPORTED EMPLOYMENT The Division of Vocational Rehabilitation (VR) provides supported employment as a support for individuals with the most severe disabilities who are eligible for competitive employment with ongoing, continual job coach support. VR usually contracts this service with an agency that provides adult services for individuals with cognitive or emotional disabilities. This service allows individuals with cognitive disabilities, significant developmental delays, and severe emotional disturbances to attain and maintain community-based employment. The adult service agency provides ongoing job coach support to assist with the needs an individual may have that may prevent him or her from maintaining competitive employment independently or with minimal support. An example of a need for supported employment is an individual who is blind and has been diagnosed with autism. This individual completes daily tasks in order at work; however, he needs frequent reminders to move from one task to another or to continue a task and needs assistance with transitions from one place to another. Supported employment provides an opportunity for individuals with more severe disabilities to receive employment in the community with their adult peers. It is a benefit for the individual as well as the community. See also individualized transition plan; vocational rehabilitation. BETH CLAVENNA-DEANE 370
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SURTHRIVAL For many years, parents and professionals have witnessed sharp contrasts in the educational experiences of many students with autism spectrum disorders (ASD). Parents may report that their child thrives during first grade, only to struggle for social and emotional survival in second grade. Similarly, a teacher may have a wonderful year working with her first student with Asperger syndrome, only to watch sadly as he is repeatedly ‘‘in trouble’’ with his teacher the following year. Attempts to explain these sharp contrasts, this thrive versus struggle to survive phenomenon, often center around the personality or attitude of the teacher and/or others on the student’s educational team. However, attitude can explain only part of the difference. A student’s social and emotional success does not rest solely in mastery of the goals and objectives in his or her educational plan. Instead, it is the result of effort and learning by a student and all of those working on his behalf. Surthrival is the shared social goal in ASD—a positive social process that yields benefits for all. Created by merging the terms survive and thrive, Surthrival derives its meaning from both words (see Figure 18). Students have a responsibility to learn the concepts and skills to help them socially and emotionally survive, and those who surround them have an equal responsibility to learn the attitudes and practices that create contexts where students can thrive. Based on a belief that the social impairment in ASD is a shared challenge, Surthrival seeks to discover social solutions rather than invent predetermined, prescribed outcomes. For this reason, Surthrival often results in outcomes that take everyone pleasantly by surprise! Formally defined in Figure 18, Surthrival is supported by a paradigm, social curiosity, and five practices. Social curiosity has strong roots in respect for other perspectives and social styles, and is fueled by the possibilities of a third social option that is not typical, and not ASD, but collaboration between the two. The five practices are represented by occupations used as metaphors to represent important skill sets. These include: (a) an Investigative Reporter, who seeks to understand the roots of unique responses; (b) a Personal Trainer, who has a great sense of humor and extends a ‘‘come as you are’’ welcome; (c) a Travel Agent, who provides support by structuring experience; (d) an Air Traffic Controller, who can foresee problem situations and ‘‘coach pilots’’ through challenging situations; and (e) a Choir Director, who leads ‘‘individual voices: learning to work effectively as a group. Sharing a strong foundation in social curiosity, these five practices are interdependent and work together to create opportunities for Surthrival.
Figure 18 Definition of Surthrival Surthrival /s r thrv’ l (noun). 1) the shared goal and solution to ‘‘the social impairment in autism spectrum disorders (ASD),’’ often with unanticipated benefits for all, 2) the social, emotional, and intellectual growth of a child, adolescent, or adult with an ASD in an environment governed by a philosophy and defined set of practices (possibly within an environment not otherwise conducive to such learning), 3) a state of inherent social health and balance between two or more parties with often distinct perceptions, perspectives, and responses to social contexts and communication. To surthrive (verb). e
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Returning to the reality of the ‘‘survive’’ versus ‘‘thrive’’ phenomenon of students with ASD described earlier, can the paradigm and practices of Surthrival be taught and learned? Or does it require inborn traits, delegating opportunities for students with ASD to thrive in learning environments to a random hit or miss luck of the draw? These authors believe that ‘‘if Surthrival can be identified, it can be measured. If Surthrival can be measured, it can be taught. If Surthrival can be taught, it can be learned’’ (Gray & Krusniak, 2006, p. 31). REFERENCE Gray, C., & Krusniak, W. M. (2006, Summer). Evidence of Surthrival. Autism Spectrum Quarterly, 30–32.
FURTHER INFORMATION The Gray Center: www.TheGrayCenter.org.
CAROL GRAY
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WHITNEY MITCHELL KRUSNIAK
SYMBOLIC PLAY Children with ASD show delays or differences in the development of symbolic play (a.k.a. pretend, make-believe, imaginary play; APA, 2000). Symbolic play reflects the child’s capacity to intentionally disengage from reality and act as if he is doing something or being someone else in a manner that is representational. This includes object substitutions, attribution of absent or false properties, and representing imaginary objects or events as present (Baron-Cohen, 1987; Leslie, 1987; Wolfberg, 1999, 2003). See also integrated play groups; play-oriented therapies. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Baron-Cohen, S. (1987). Autism and symbolic play. British Journal of Developmental Psychology, 5(2), 139–148. Leslie, A. M. (1987). Pretense and representation: The origins of ‘‘theory of mind.’’ Psychological Review, 94, 412–426. Wolfberg, P. J. (1999). Play and imagination in children with autism. New York: Teachers College Press, Columbia University. Wolfberg, P. J. (2003). Peer play and the autism spectrum: The art of guiding children’s socialization and imagination. Shawnee Mission, KS: Autism Asperger Publishing Company.
FURTHER INFORMATION Autism Institute on Peer Relations and Play: www.autisminstitute.com.
PAMELA WOLFBERG SYMBOLIC THOUGHT Symbolic thought is the developmental stage when a child begins to use formal symbols such as words and pictures to create meanings and communicate ideas. This is typically manifested in spoken words. This stage develops between 18 and 30 months of age. A child will progress through several levels of symbolic thought: words and actions used together; action words used instead of the corresponding behavior; words used to convey feelings such as, ‘‘I’m happy’’; words used to convey bodily states, ‘‘my stomach aches’’; words used to communicate global feelings as, ‘‘I’m OK’’; and words used to 372
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convey more specific feelings, such as, ‘‘I feel angry’’ (Greenspan & Shanker, 2004). Children also begin to use symbolic thought in play by using toys, props, and other people to direct their actions. Later, children will communicate symbolic thought by pretending in play using object substitution, role taking, and role-play. (Quill, 2000). REFERENCES Greenspan, S., & Shanker, S. (2004). The first idea, how symbols, language, and intelligence evolved from our primate ancestors to modern humans. Cambridge, MA: Da Capo Press. Quill, K. A. (2000). Do-watch-listen-say: Social and communication intervention for children with autism. Baltimore: Brookes Publishing Co.
ANN PILEWSKIE SYMPTOM A symptom is a change in health, such as having a raised temperature, being in pain, or being nauseous. When referring to an illness, a symptom is used in aiding in diagnosis. When discussing symptoms, one may talk about general symptoms or specific symptoms related to body systems or diseases. TERRI COOPER SWANSON SYNDROME The term syndrome refers to a disorder or abnormality that is diagnosed based upon a group of signs and symptoms that tend to occur together. When certain signs and symptoms co-occur frequently, it is suspected that they may have the same underlying cause, may run in certain families, may follow the same course, or may respond to the same treatments. All autism spectrum disorders are, in fact, syndromes, because they are diagnosed based on combinations of difficulties in social interaction, communication, and repetitive behaviors (APA, 2000). REFERENCE American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
LISA BARRETT MANN SYSTEMATIC DESENSITIZATION Systematic desensitization was first used by Wolpe in 1958. This technique is usually applied to situations in which people are experiencing anxiety and/or phobias. The person is asked by the therapist to rank a group of scenarios from least or most anxiety or fear producing. Then while the person is experiencing that situation or imagining it, he or she learns to replace their anxious feelings with feelings of relaxation. Once the least fearful situation becomes no longer anxiety producing, the person can move to more anxiety-producing situations (Cooper, Heron, & Heward, 1987). See also anxiety disorders. REFERENCES Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall. Wolpe, J. (1958). Psychotherapy by reciprocal inhibition. Stanford: Stanford University Press.
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T TACT The term tact originated with writings on verbal behavior within the field of applied behavior analysis. A tact is the labeling of an item. An example would be a parent holding up a shoe and the child labeling the shoe. No requesting is involved in the tacting of an item; it is simply labeling an item in the environment (Lerman, Parten, Addison, et al., 2005). REFERENCE Lerman, D. C., Parten, M., Addison, L. R., Vorndran, C. M., Volkert, V. M., & Kodak, T. (2005). A methodology for assessing the functions of emerging speech in children with developmental disabilities. Journal of Applied Behavior Analysis, 38(3), 303–316.
TARA MIHOK
TACTILE Located in the skin cells, the tactile system provides information about objects in the environment. Individuals with autism spectrum disorders often exhibit touch sensitivity. At its extreme, tactile hypersensitivity, or defensiveness, involves physical discomfort when coming into contact with someone or something that others might not register. Standing in line, shopping for clothing, bathing, eating, and using a glue stick all present potentially stressful situations for tactilely defensive individuals. In contrast, individuals who are hyposensitive fail to respond to the touch of others, yet often use touch to explore the environment for the tactile input they crave. See also sensory integration; sensory integration disorder. KELLY M. PRESTIA
TACTILE DEFENSIVENESS Tactile defensiveness is a behavior or coping mechanism exhibited by individuals who may be sensitive to certain tactile sensory stimuli. Observable behaviors of tactile defensiveness may include pulling away from the touch of others or wearing tagless undershirts. KELLY M. PRESTIA
TARGET BEHAVIOR
TARGET BEHAVIOR A desired or target behavior is a single, clearly defined, observable behavior. The behavior is defined to allow observations, data recording, and/or teaching of the specific behavior. A target behavior may be a negative or undesired behavior or a positive behavior being taught. For example, in discrete trial training, the specific skill or response being taught within a program is called the target behavior. It is of utmost importance that the desired or target behavior be clearly defined so that anyone reading its description would know exactly what is being addressed. This definition is referred to as an operational definition. Having a good operational definition provides clarity for staff and students alike and ensures accurate data and consistent instruction. KATIE BASSITY TASK ANALYSIS A task analysis is a breakdown of the individual steps involved in a complex behavior. For example, for hand washing, the task analysis would identify each step: turn on water, get hands wet, get soap, rub hands, rinse hands, turn off water, dry hands. The degree to which a behavior is broken down depends upon the individual and the task. Once a task analysis is performed, chaining is often used to teach the behavior. See also applied behavior analysis. KATIE BASSITY TESTIMONIAL Testimonial is a written or verbal statement often given by an individual or group of individuals in support of a particular truth, fact, or claim. This anecdotal evidence is typically used to persuade others to support their belief. See also anecdotal report. THERESA L. EARLES-VOLLRATH TEST OF ADOLESCENT AND ADULT LANGUAGE– FOURTH EDITION (TOAL4) The Test of Adolescent and Adult Language–Fourth Edition (TOAL4; Hammill, Brown, Larsen, & Wiederholt, 2007) measures expressive and receptive language skills from individuals ages 12 to 24. This norm-referenced assessment yields scores in the following areas: listening, speaking, reading, writing, spoken language, written language, vocabulary, grammar, receptive language, and expressive language. REFERENCE Hammill, D. D., Brown, V. L., Larsen, S. C., & Wiederholt, J. L. (2007). Test of adolescent and adult language–fourth edition. Austin, TX: Pro-Ed.
JEANNE HOLVERSTOTT TEST OF LANGUAGE COMPETENCE (TLC) The Test of Language Competence (TLC; Wiig & Secord, 1989) determines student language strategies, assists in developing remediation plans, and aids in the development of Individual Education Plan goals and objectives. Subtests of this assessment include Ambiguous Sentences, Listening Comprehension: Making Inferences, Oral 376
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Expression: Recreating Speech Acts, Figurative Language, and a supplemental memory subtest. Two levels of the TLC can be administered to children ages 5–9 and 10–18. REFERENCE Wiig, E. H., & Secord, W. (1989). Test of language competence. New York: Harcourt Publishing.
JEANNE HOLVERSTOTT TEST OF LANGUAGE DEVELOPMENT–INTERMEDIATE, THIRD EDITION (TOLD-I) The Test of Language Development–Intermediate, Third Edition (TOLD-I; Hammill & Newcomer, 1997) consists of five subtests that measure components of spoken language. Students ages 8–0 through 12–11 are given tasks in combining sentences, understanding word relationships, constructing sentences with appropriate word order, knowing abstract relationships, recognizing grammatical sentences, and correcting ridiculous or absurd sentences. REFERENCE Hammill, D. D., & Newcomer, P. L. (1997). Test of language development–intermediate, third edition. Austin, TX: Pro-Ed.
JEANNE HOLVERSTOTT TEST OF LANGUAGE DEVELOPMENT–PRIMARY (TOLD-P) The Test of Language Development–Primary (TOLD-P; Hammill & Newcomer, 1996) consists of nine subtests that measure components of spoken language. Picture Vocabulary, Relational Vocabulary, and Oral Vocabulary assess the understanding and meaningful use of spoken words. Grammatic Understanding, Sentence Imitation, and Grammatic Completion subtests assess differing aspects of grammar. Word Articulation, Phonemic Analysis, and Word Discrimination are supplemental subtests that measure the ability to say words correctly and to distinguish between words that sound similar. REFERENCE Hammill, D. D., & Newcomer, P. L. (1996). Test of language development–primary. Minneapolis, MN: Pearson Assessments.
JEANNE HOLVERSTOTT TEST OF PRAGMATIC LANGUAGE (TOPL) The Test of Pragmatic Language (TOPL; Phelps-Teraski & Phelps-Gunn, 1992) is an individually administered test designed to assess an individual’s ability to use pragmatic language. The test includes 44 items, each of which establishes a social context. After a verbal stimulus prompt from the examiner, who also displays a picture, the student responds to the dilemma. TOPL test items provide information within six core subcomponents of pragmatic language: physical setting, audience, topic, purpose (speech acts), visual-gestural cues, and abstraction. REFERENCE Phelps-Terasaki, D., & Phelps-Gunn, T. (1992). Test of pragmatic language. Austin, TX: Pro-Ed.
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TEST OF PROBLEM SOLVING–ADOLESCENT (TOPS-A) The Test of Problem Solving–Adolescent (TOPS-A; Bowers, Huisingh, Barret, Orman, & LoGiudice 2007) assesses problem solving, critical thinking skills, and expressive language skills of adolescents ages 12–18. The 13 problem-solving items are composed of passages and open-ended questions designed to assess skills in clarifying, evaluating, fair-mindedness, analyzing, thinking independently, and affect. REFERENCE Bowers, L., Huisingh, R., Barret, M., Orman, J., & LoGiudice, C. (2007). Test of problem solving–adolescent. East Moline, IL: LinguiSystems, Inc.
JEANNE HOLVERSTOTT TEST OF PROBLEM SOLVING–ELEMENTARY (TOPS-E) The Test of Problem Solving–Elementary (TOPS-E; Bowers, Huisingh, & LoGiudice, 2005) assesses the ability of children ages 6 to 11 years to organize thoughts and express thoughts clearly. Performance is assessed in problem solving, determining solutions, drawing inferences, empathizing, predicting outcomes, using contextual cues, and vocabulary comprehension. REFERENCE Bowers, L., Huisingh, R., & LoGiudice, C. (2005). Test of problem solving 3–elementary. East Moline, IL: LinguiSystems, Inc.
JEANNE HOLVERSTOTT THEORY OF MIND Theory of mind refers to the ability to understand and impute to people mental states such as feelings, beliefs, or intentions that are different from our own (BaronCohen, Leslie, & Frith, 1985; Cumine, Leach, & Stevenson, 1998; and Klin, Volkmar, & Sparrow, 2000). There are two levels of theory of mind. First order comprises the ability to predict a mental state of someone else (e.g., I think that Katy thinks), the second order involves the ability to predict one person’s mental state about another person’s mental state (e.g., Katy thinks that Mark thinks). The theory of mind hypothesis related to autism proposes that persons with autism have difficulty or are unable to perceive the desires, intentions, or beliefs of others. The significance of this deficit is the inability of a person to develop and understand social relationships and answer appropriately to the social demands of his or her environment. See also social skills training; social thinking. REFERENCES Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a theory of mind? Cognition, 21, 37–46. Cumine, V., Leach, L., & Stevenson, G. (1998). Asperger syndrome, a practical guide for teachers. London: David Fulton Publishers. Klin, A., Volkmar, F. R., & Sparrow, S. S. (2000). (Eds.). Asperger syndrome. New York: Guilford Press.
FURTHER INFORMATION Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: The MIT Press.
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TIC DISORDERS Baron-Cohen, S. (2004). Mind READING The interactive guide to emotions [DVD edition]. London: Jessica Kingsley Publishers. Charman, T., Baron-Cohen, S., Swettenham, J., Baird, G., Cox, A., & Drew, A. (2000). Testing joint attention, imitation, and play as infancy precursors to language and theory of mind. Cognitive Development, 4, 481–498. Howlin, P., Baron-Cohen, S., & Hadwin, J. (1998). Teaching children with autism to mind-read: A practical guide for teachers and parents. New York: John Wiley. McAfee, J. (2002). Navigating the social world: A curriculum for individuals with Asperger’s syndrome, high functioning autism, and related disorders. Arlington, TX: Future Horizons.
SUSANA BERNAD-RIPOLL
TIC DISORDERS A tic is a brief, nonrhythmic, recurrent, and rapid movement caused by a problem in the brain with neurons that use dopamine. Tics can involve the skeletal muscles, which produce motor tics, or the smooth muscles, which produce vocal tics. Tics can be simple, involving only one muscle group, or complex, involving multiple groups. Common motor tics include simple ones such as eye blinking, head turning, or jaw movements, as well as complex ones such as hand gestures, jumping, or twirling. Vocal tics most commonly involve simple ones like clearing the throat or snorting. Complex vocal tics are rarer and can include saying words or phrases, including curse words. These words, like many tics, are unrelated to the situation and are potentially very embarrassing. Kurlan, McDermott, Deeley, Como, Brower, et al. (2001) found that around 20 percent of typical grade school children exhibited at least one tic. Most of these children and their families did not attach significance to their tics, and therefore they did not reach medical attention. When tics interfere with a person’s ability to function, a tic disorder may be diagnosed and treatment considered. The Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revision (DSM-IV-TR; APA, 2000) identifies four basic tic disorders: chronic motor or vocal tic disorder, transient tic disorder, tic disorder NOS, and Tourette’s disorder. Individuals with a chronic motor tic disorder present only motor tics and no vocalizations. Chronic vocal tic disorder is similar except that the individual exhibits vocal tics with no motor involvement. Transient tic disorder patients have motor and/or vocal tics not for more than one year for at least four weeks. To be diagnosed with tic disorder NOS, the duration or frequency does not match the stipulations of the other conditions. Additionally, tic disorders must start before age 18 and cannot be secondary to substance abuse or another known medical condition. Tourette’s disorder, sometimes referred to as Tourette’s syndrome or TS, combines vocal and motor tics, though both do not have to be consistently present. The DSM-IV-TR (APA, 2000) states that in both chronic tic disorders and Tourette’s, tics must be present for at least one year with no tic-free periods longer than 3 months. With Tourette’s disorder, the intensity of tics fluctuates across time, with new ones starting and old ones subsiding, only to re-emerge later. Tics usually worsen with stress or excitement, such as during the school year. The treatment of tics involves the use of dopamine antagonist medications such as pimozide or haloperidol. Newer medications such as risperidone and aripiprazole are also being used, but are not yet FDA-indicated treatments. 379
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REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Kurlan, R., McDermott, M. P., Deeley, C., Como, P. G., Brower, C., Eapen, S., et al. (2001). Prevalence of tics in schoolchildren and association with placement in special education. Neurology, 57, 1383–1388.
FURTHER INFORMATION Adams, R. D., Victor, M., & Ropper, A. H. (1985). Principles of neurology (3rd ed.). New York: McGraw-Hill.
JAMES R. BATTERSON TIME-OUT Time-out is a form of punishment intended to decrease the likelihood of a behavior reoccurring. Time-out simply removes the individual from reinforcement, whether that is attention, computers, playtime, or another situation or activity. There are two types of time-out: seclusionary and nonseclusionary. Seclusionary time-out removes the individual from the setting where the reinforcement is offered; nonseclusionary keeps the individual in the setting while still denying her access to reinforcement. It is important to remember that time-out is only effective and should only be used if it decreases the likelihood of the undesired behavior occurring again. In addition, timeout must remove the individual from all forms of reinforcement. For these reasons, time-out is not effective for all behaviors, all situations, or all children. See also reinforcer. KATIE BASSITY TOE WALKING/EQUINUS GAIT Toe walking, also called equinus gait for its similarity to the way a horse walks, is normal for typically developing youngsters up to age 3. For those with autism spectrum disorders or other disabilities, toe walking may be seen well into childhood. Toe walking can be caused by a number of factors including habit, immature nervous system, visual problems, and various neuromuscular disorders. FURTHER INFORMATION Edelson, S. M. (2005). Toe walking. Retrieved June 5, 2006, from http://www.autism.org/ toewalk.html. Schwentker, E. P. (2004). Toe walking. Retrieved June 5, 2006, from http://www.emedicine. com/orthoped/topic451.htm.
PAUL G. LACAVA TOKEN ECONOMY Token economy is an individualized reinforcement system that uses a conditioned stimulus, or token, such as a coin, a poker chip, or even a mark on a paper, to represent progress towards the receipt of a predetermined reinforcer for a certain predetermined behavior. The tokens are earned for performing appropriate behavior and are then traded for reinforcement, which are tangible goods or privileges desired by the individual (Alberto & Troutman, 1999). Token economies can take many forms. The 380
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tokens can be traded one token for one reinforcer, or can be traded at a higher rate of multiple tokens for one reinforcer. Token economies are beneficial for several reasons. They assist in the delay of reinforcement over time and between different places or settings and decrease the satiation of reinforcement (Cooper, Heron, & Heward, 1987). See also applied behavior analysis. REFERENCES Alberto, P. A., & Troutman, A. C. (1999). Applied behavior analysis for teachers (pp. 235–247). Upper Saddle River, NJ: Merrill. Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice Hall.
JESSICA KATE PETERS
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TARA MIHOK
TOTAL COMMUNICATION Total communication is an educational philosophy for children who are deaf or hearing impaired. This philosophy promotes the use of all modes of communication that are most effective for the child in any given moment. This allows the child to use all available modes of communication such as speech, lip-reading, sign language, writing, visual supports, or a combination of these. This philosophy was meant to find a middle ground between advocates for oral language only and advocates for sign language only as methods of communication. The term total communication was first coined by Roy Holcomb in 1967 in California and developed by David Denton at the Maryland School for the Deaf. By the mid 1970s, most of the schools for children who were deaf incorporated such philosophy in their instructional curriculums. FURTHER INFORMATION Baker, R., & Knight, P. A. (1998). Total communication: Current policy and practice. In S. Gregory, P. Knight, W. McCracken, S. Powers, & L. Watson (Eds.), Issues in deaf education (pp. 77–78). London: David Fulton, Publisher. Evans, L. (1982). Total communication: Structure and strategy. Washington, DC: Gallaudet University Press Gibbs, E., & Springer, A. (1994). Early use of total communication: An introductory guide for parents. Baltimore: Brookes Publishing Co.
SUSANA BERNAD-RIPOLL TOUCH PRESSURE Touch pressure is also known as proprioception, which involves firm but gentle touch to strategic parts of the body as an intervention to calm and reorganize the body and nervous system. KELLY M. PRESTIA TOUCH THERAPY Touch therapy is an intervention that attempts to desensitize an individual who may be overly sensitive to touch by slowly increasing the amount and types of touch that the individual will tolerate. KELLY M. PRESTIA 381
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TOWER OF HANOI (TOH) The Tower of Hanoi (TOH; Lawrence Hall of Science, n.d.) is a mathematical puzzle invented by the French mathematician Edouard Lucas in 1883. TOH consists of a tower of eight disks, initially stacked in increasing size on one of three pegs. The objective is to transfer the entire tower to one of the other pegs, moving only one disk at a time and never a larger one onto a smaller. REFERENCE Lawrence Hall of Science (n.d.). Tower of Hanoi facts. Retrieved December 10, 2006, from http://www.lawrencehallofscience.org/Java/Tower/index.html.
JEANNE HOLVERSTOTT TOXICOLOGY Toxicology refers to the study of the symptoms, treatments, and detection of the adverse effects of chemicals on living organisms, typically referred to as poisoning. The chief criterion regarding the toxicity of a chemical is the dose or the amount of exposure to the substance. JEANNE HOLVERSTOTT TRAIL-MAKING TEST The Trail-Making Test (TMT; Reitan, 1958) requires participants to draw a single, continuous line (a trail) through randomly located items on a sheet of paper. In TMT’s Form A, the trail is drawn through numbers to be connected in numerical order from 1 to 25. In Form B, the trail is through spatially intermingled numbers and letters, alternating between the two kinds of items, 1, A, 2, B, and so forth. The total time to complete each form is measured and performance is summarized by scoring each test separately, computing the difference between the two total times, or by their ratio. TMT is used to assess executive functioning; specifically, differential performance on the two forms has been linked to the ability to perform complex executive functions, such as planning of actions and switching between activities (Kuhlman, Little, and Sekuler, in press). REFERENCES Kuhlman, A., Little, D., & Sekuler, R. (in press). An interactive test of serial behavior: Age and practice alter executive function. Journal of Clinical and Experimental Neuropsychology. Reitan, R. M. (1958). Trail making test: Manual for administration, scoring and interpretation. Indianapolis, IN: Indiana University Medical Center.
JEANNE HOLVERSTOTT TRANSITION PLANNING The Individuals with Disabilities Education Act (IDEA; 2004) provides for functional transition planning beginning no later than age 16 years and designed to support the movement of the individual learner from school-age services and supports (to the greatest extent possible) to the postschool world of adult independent living. IDEA defines transition planning as a coordinated set of activities that focus on improving the academic and functional achievement of the student and facilitate 382
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Figure 19 Initial Employment Experience Goal Student: Mark Doe Age: 14 years Transition to Employment Goal: To obtain an employment experience in a field/location where: There are clear completion criteria He will be able to listen to his music on a Walkman He will be able to consistently get to the location, and He will work directly with one primary supervisor. Short-term (3 Month) Objectives & Person Responsible: Investigate employment opportunities meeting these criteria—School Staff Assess specific instructional opportunities in terms of production (the work he will do), social (the interaction environment of the workplace), navigation (e.g., ability to independently access the Men’s Room) and safety demands (potential hazards such a complex machinery)— Transition Specialist Develop instructional programs to meet noted skill demands in new environment—Transition Specialist Develop brief coworker training protocol focusing on the strengths of Mark Doe and what he may need to support effective communication—Transition Specialist and Newly Identified Employer Obtain bus pass for ride to work—Mark and His Parents Obtain state issued photo identification and age-appropriate wallet—Mark and His Parents Purchase work specific clothes (if necessary)—Mark and His Parents Schedule next meeting—All Concerned
movement from school to postschool activities. Additionally, IDEA requires that the transition services be based on the student’s strengths, as well as their preferences and interests, and that the transition process is driven by a ‘‘results-oriented’’ philosophy of instruction and program development. In practice, there is general agreement as to the overall importance of comprehensive transition planning. Comprehensive, in this case, can best be understood as including input from all relevant sources (e.g., the individual and family, school personnel, interested community members, representatives from postsecondary agencies/ services, potential employers, etc.) with goals developed across all relevant domains (e.g., academics, behavior support, communication and social skills, community independence, safety, navigation, employability) and across all relevant environments (e.g., home, community, work, recreation). The central question to be addressed across all areas of comprehensive transition planning is, quite simply, ‘‘To what is the learner with ASD transitioning and what skills, competencies, services or supports will they need once they get there?’’ Failure to adequately answer this question results in a process best described by Lewis Carroll (1832–1898) when he wrote, ‘‘If you don’t know where you are going, any road will take you there.’’ In other words, in the absence of good planning quite a bit of time and effort will be exhausted with few, if any, discernable outcomes. A sample results-oriented goal for the development of a first employment experience may look something like this: 383
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THE ROLE OF THE FAMILY There is little disagreement as to the critical role the family plays in effective transition planning. Beyond their personal knowledge of, and relationship with, their son or daughter, many parents with learners with autism spectrum disorders (ASD) are well versed in the current state of ASD research, services, and supports through their attendance at conferences, reading of journal articles, access of relevant texts, and extensive networking. Any reduction in parent involvement, either through the implementation of policies or procedures that restrict parental involvement or familial fear of ‘‘rocking the boat’’ denies the transition team access to both valuable information and, in many cases, an educated colleague. Perhaps the most important role, among many, that parents and family members can play in the transition process is their continuing role as an advocate for their child. Despite a bevy of new stressors that may appear during the transition years (e.g., an unfamiliarity with the adult system of services and supports; the potential inability of this system to meet the needs of their, now, nearly adult child; the stress associated with life-cycle transitions in general and, uncertainty regarding the future), the need for parents to forcefully advocate on behalf of their son or daughter does not diminish with age. For all aspects of comprehensive transition planning to be effectively implemented, the critical role that parent advocacy plays cannot be overstated. Transition planning, in summary, is a complex, complicated, dynamic, and highly individualized (or person-centered) process. Based on an almost backwards process, good transition planning begins not where the student is, but rather where the student wants to be as the initial, school-based process winds to a close. Individual goals and objectives are developed accordingly. It is important to note that good transition planning actually continues across a person’s postschool life with new goals and objectives developed on a regular basis to provide the skills necessary to meet such challenges as moving into a new apartment, starting a new job, graduating from college, or meeting new people. Comprehensive transition planning, it seems, does not terminate as a function of one’s high school graduation but instead, is only temporarily suspended at times as a function of one’s attaining a preferred, active, and included quality of life. See also Individualized Transition Plan; postsecondary education; vocational rehabilitation. REFERENCE Individuals with Disabilities Education Improvement Act of 2004. Public Law No. 109-446, § 20 U.S.C. (2004).
FURTHER INFORMATION Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23, 79–89. Ford, A., Schnorr, R., Meyer, L., Davern, L., Black, J., & Dempsey, P. (Eds.). (1989). The Syracuse community-referenced curriculum guide for students with moderate to severe disabilities. Baltimore: Brookes Publishing Co. Gerhardt, P. F., & Holmes, D. L. (2005). Employment: Options and issues for adolescents and adults with autism. In F. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 1087–1101). New York: Wiley.
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TUBEROUS SCLEROSIS COMPLEX Gerhardt, P. F. (2003). Transition support for learners with Asperger syndrome: Toward successful adulthood, In T. Gullota & R. Ducharne (Eds.), Aspergers syndrome (pp. 159–174). New York: Klewer/Plenum. Griffiths, D. M., Richards, D., Fedoroff, P., & Watson, S. L. (Eds.) (2002). Ethical dilemmas: Sexuality and developmental disabilities. Kingston, NY: NADD Press. Howlin, P., Goode, S., Hutton, S., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229. Jefferson, G. L., & Putnam, G. L. (2002, May). Understanding transition services: A parent’s guide to legal standards and effective practices. Exceptional Parent Magazine, 70–77. Koller, R., (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18, 125–135. Steere, D. E., Rose, E., & Cavaiuolo, D. (2006). Growing up: Transition to adult life for students with disabilities. Boston: Allyn & Bacon. Wehman, P. (2002). Individual transition plans: The teacher’s curriculum for helping youth with special needs (2nd ed.). Austin, TX: Pro-Ed. Wehman, P. (2006). Life beyond the classroom: Transition strategies for young people with disabilities. Baltimore: Brookes Publishing Co.
PETER GERHARDT TREATMENT EFFECTIVENESS Treatment effectiveness refers to the ability of a particular treatment (e.g., pharmacological, psychosocial) to remediate the symptoms of a psychological disorder. Because anecdotal reports from providers and clients typically provide flawed data, treatment effectiveness is typically assessed through empirical research. See also empirical evidence. JEANNE HOLVERSTOTT TRIAL A trial is the individual, distinct unit of behaviorally based instruction. It is comprised of four parts: the discriminative stimulus (SD), the response (R), the reinforcing stimulus (SR), and the intertrial interval. In addition, a prompt may be added, in which case it would immediately follow the SD and precede the response. The SD is the command or demand, and it may be verbal, such as ‘‘touch head,’’ nonverbal, or a combination of the two. The R is the student’s response to the given command, and the SR is the instructor’s response to the student’s response. While it is desired that the SR is a conscious reinforcement provided by the instructor, dependent on the student’s response, some form of SR occurs regardless of the teacher’s intent because it is virtually impossible to not react to the student’s response. An intertrial interval follows each SDR-SR sequence to separate it from the next SD-R-SR sequence; this is what makes the trial an individual unit of instruction. There are a wide variety of prompts which can be used within a trial, and instructors should be fully conscious of themselves while carrying out a trial to be sure prompts are only given when and how they are intended. See also discrete trial training; prompting. KATIE BASSITY TUBEROUS SCLEROSIS COMPLEX Tuberous sclerosis complex is a genetic disorder in which multiple tumors appear in the skin, brain, heart, and kidneys of affected children. Infants born with this disease may have facial skin lesions (called angiofibromas), tumors of the central nervous 385
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system (called astrocytomas), and other lesions, producing mental retardation and seizures. JEANNE HOLVERSTOTT TWENTY QUESTIONS TASK The Twenty Questions Task (Denny & Denny, 1973) is a test of abstract thinking and problem solving involving two participants. One participant selects a topic, typically a person, place, object, or idea. The other participant can ask up to 20 yes-or-no questions in order to discover the other participant’s topic. Success typically results from employing efficient strategies and effective communication. REFERENCE Denny, D. R., & Denny, N. W. (1973). The use of classification for problem-solving: A comparison of middle and old age. Developmental Psychology, 9, 275–278.
JEANNE HOLVERSTOTT TWIN STUDIES Autism research studies involving twins as subjects have been conducted since the 1970s. These twin studies have provided some of the most conclusive evidence for the genetic contribution to autism. Scientists calculate the chances of disabilities such as autism within twin pairs by studying identical twins (who share one embryo and have identical DNA) and fraternal twins (who have separate embryos and share only 50 percent of DNA). Twin studies have shown that autism and other autism spectrum disabilities, as well as other developmental problems, are much more likely in both identical twins as compared to a set of fraternal twins, non-twin siblings, or the typical population. FURTHER INFORMATION Le Couteur, A., Bailey, A., Goode, S., Pickles, A., Robertson, S., Gottesman, I., et al. (1996). A broader phenotype of autism: The clinical spectrum in twins. Journal of Child Psychology and Psychiatry, 37, 785–801 Pericak-Vance, M. A. (2003). Discovering the genetics of autism. USA Today, 131, 56–57. Rutter, M. (2005). Aetiology of autism: Findings and questions. Journal of Intellectual Disability Research, 49, 231–238. The Tech Museum of Innovation. (March 31, 2006). Ask a geneticist. Retrieved July 25, 2006, from http://www.thetech.org/genetics/ask.php?id=168.
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U UNIVERSAL NONVERBAL INTELLIGENCE TEST (UNIT) The Universal Nonverbal Intelligence Test (UNIT; Bracken & McCullum, 1998) is designed to provide a thorough assessment of general intelligence for students from ages 5 through 17 years of age who may be at a disadvantage with traditional language-based intelligence tests. Students who may benefit from the UNIT are individuals previously identified with or thought to be diagnosed from many diverse areas such as different cultural backgrounds, intellectually gifted, limited English proficiency, deaf or hearing impaired, mental retardation, speech and language difficulties, autism, serious emotional disturbance or psychiatric disorders, and/or learning disabilities. The UNIT is administered primarily through nonverbal gestures, and students respond via symbolic representations and gestures. The UNIT must be given by a psychologist trained and licensed in intelligence testing. REFERENCE Bracken, B. A., & McCullum, R. S. (1998). The universal nonverbal intelligence test. Chicago: Riverside Publishing.
BROOKE YOUNG
V VACCINATIONS (THIMEROSAL) Vaccinations containing the preservative thimerosol are a controversial issue related to one of the possible causes of autism. Despite the fact that the Centers for Disease Control and Prevention and the American Academy of Pediatrics issued the statement, ‘‘the available scientific evidence has not shown thimerosol-containing vaccines to be harmful’’ (World Net Daily, 2004), the U.S. Food and Drug Administration in 1999 decided to no longer use thimerosol in vaccinations. Today several national organizations continue to raise funds to search for the causes of autism, with vaccinations containing thimerosol being one the leading causes. REFERENCES World Net Daily (2004, April 3). Feds won’t warn people about vaccine. Retrieved December 13, 2006, from http://wnd.com/news/article.asp?ARTICLE_ID=37874. U.S. Food and Drug Administration. (n.d.). Thimerosol in vaccines frequently asked questions. Retrieved December 13, 2006, from www.fda.gov/cber/vaccine/thimfaq.htm.
FURTHER INFORMATION Autism Research Institute: www.autismwebsite.com. Autism Speaks: www.autismspeaks.org. Centers for Disease Control (n.d.). National immunization program. Retrieved December 13, 2006, from www.cdc.gov/nip/vacsafe/concerns/thimerosal/faqs-thimerosal.htm.
TERRI COOPER SWANSON
VALIDITY Validity refers to a study measuring information based on its design and the absence of logical errors in drawing conclusions from the data. Many different types of validity exist, all concerning the threats and biases that would undermine the meaningfulness of research. See also concurrent validity. JEANNE HOLVERSTOTT
VAN DIJK APPROACH
VAN DIJK APPROACH The van Dijk approach is an integrated model of assessment and educational curriculum tailored for individuals who are deaf-blind and who may have intellectual disability and/or physical disability. The approach is based on the understanding that combined loss of vision and hearing affects communication, socialization, conceptualization, and movement (MacFarland, 1995). ASSESSMENT MODEL In 1960, Dr. Jan van Dijk and his colleagues in the Netherlands developed a series of assessment strategies that focused on the process of how children who are deaf-blind learn rather than focusing on individual, discrete skills (Nelson, 2002). Such processes include: (a) preferred learning channels; (b) ability to maintain and modulate state; (c) ability to learn, remember, and anticipate routines; (d) ability to accommodate new experiences with existing schemes; (e) problem-solving approach; (f) ability to develop social attachments and interaction with others; and (g) communication modes. The basis of this type of assessment is the establishment of a secure relationship between the child and the evaluator. To this end, the child is given time to explore and become comfortable in the new environment. Parents, or persons with whom the child feels secure, do not leave until a safe relationship is developed with the evaluator. The evaluator is responsible for adjusting his emotional level and communication to the child and the child’s interests and abilities. In fact, it is the child’s interests and abilities that determine what materials are used and the direction of the assessment. The child initiates the conversation, and the assessor reproduces what the child is doing, adding new information as turn-taking routines are built. Communication signals are elicited by stopping the pleasurable routine and waiting for the child to sign that she wants to continue (Nelson, 2002). During these interactions, the child is able to demonstrate her ability to learn, and the evaluator is able to identify methods and educational objectives for teaching the child. It is important to note that this process is tailored to each child; therefore, there are no standard materials or instructions. However, van Dijk and Nelson have developed an interactive CD with multiple videos of strategies for assessments (see references). CURRICULUM MODEL The van Dijk curriculum uses a holistic approach implemented through the student’s daily program. This curriculum model seeks to develop four child outcome characteristics: (a) initial attachment and security; (b) concepts of near senses (touch, smell, and taste) and distance senses (hearing and vision) in relation to the world; (c) ability to structure the world; and (d) natural communication systems. The four outcomes are organized in 14 instructional strategies. These instructional strategies are teacher-applied methods (McFarland, 1995). This curricular approach addresses several major principles such as sensory deprivation, integration of sensory information, concept formation, attachment and security, progressive distancing from concrete to more symbolic concepts, organizing and 390
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structuring the world, anticipatory learning, natural symbol development, pragmatic communication, and symbolic language (McFarland, 1995). According to van Dijk’s educational theory, there is an interrelationship between the neurological state of the student with dual sensory loss, vision and hearing, and the external influences of the student’s environment. Depending on how this interrelation is presented and encouraged, the student will develop a rich and meaningful world of interaction or a limited and self-absorbed one (McFarland, 1995). In this model, the teacher plays a fundamental role in guaranteeing that all components are correctly executed through the student’s educational program and integrated simultaneously in his or her daily activities (McFarland, 1995). REFERENCES McFarland, S. (1995). Teaching strategies of the van Dijk curricular approach. Journal of Visual Impairments and Blindness, 89, 222–228. Nelson, C. (2002). The van Dijk approach to child guided assessment. Retrieved April 10, 2006, from http://www.tsbvi.edu/Outreach/seehear/winter02/vnadijk.htm.
FURTHER INFORMATION van Dijk, J., & Nelson C. (2002). Child-guided strategies for assessing children who are deaf blind or have multiple disabilities [CD Rom]. Available at http://www.tsbvi.edu/Outreach/ seehear/winter02/vnadijk.htm and http://www.aapnootmuis.com/.
SUSANA BERNAD-RIPOLL VERBAL BEHAVIOR Applied behavior analysis (ABA) and verbal behavior (also known as AVB-applied verbal behavior) are based on the works of B. F. Skinner. In his book, Verbal Behavior (1957), Skinner’s theories regarding language classify speech and other forms of communication as behaviors. Skinner’s study of the ecology of behaviors (1953) aided in the development of the field of behavior modification and the principles of ABA. For example, reinforcement, motivation, discrete trial instruction, and shaping are all components of ABA directly applied in AVB. With regard to verbal behavior, the verbal operant is the ‘‘behavior’’ serving as the object of study. The operants of verbal behavior include: mand, echoic, tact, receptive function feature class (RFFC), and intraverbal. Each verbal operant is taught separately and used for language assessment. THE MAND Typically used as the first type of language taught, a mand is simply a request for something (the reinforcer) that an individual is motivated to request. The level of motivation serves as the establishing operation (EO) demonstrating how effective a reinforcer is at a particular time or place. An effective EO increases the probability that a particular behavior will occur, thus creating more opportunities to reinforce the behavior. According to Skinner (1957), observation of the child, an interview of the child, parents, and past teachers, and the administration of reinforcement inventories are necessary to discover what a child finds motivating. It is preferable to select items or activities that can be used more than once such as a toy that lights up and/or plays music. Skinner further suggests (1957) that the innately high level of motivation in 391
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the natural environment should be harnessed as much as possible. Moreover, a student should never be prompted to mand for items that are not preferred as this decreases motivation quickly. Another ‘‘motivation killer’’ is to offer some of the reinforcing items for ‘‘free’’ sometimes. The use of errorless teaching procedures, while limiting aversives and punishment, keeps the training enjoyable. Considerations should be made with regard to consistency across teachers and environments and with regard to mastery criteria and the accessibility of reinforcers. Skinner also suggests that generalization be a consideration from the initial stages of manding (1957) by varying the pace of instruction, materials, people, and environment whenever possible. THE ECHOIC The echoic is verbal behavior that is controlled by another’s verbal behavior, more commonly known as verbal imitation. Students with a limited verbal repertoire (e.g., babbling) and some indication of motor imitation can benefit from the use of pairing sign language with manding to develop vocalizations. In doing so, the focus should not be on the sign but on shaping the vocalizations (Sundberg & Partington, 1998), which is accomplished through differential reinforcing for closer and closer approximations of the vocalization (differential reinforcement). In this way, signing can be used as a ‘‘bridge’’ to arrive at the correct vocalization (Sundberg & Partington, 1998). At this stage, imitation (e.g., teacher says, ‘‘Do this,’’ and claps and the student claps), receptive language (e.g., student is able to follow a verbal direction) and matching to sample (e.g., can match items that vary only by color or size in a field of eight) should be taught as soon as possible with the echoic. THE TACT The tact is verbal behavior as a result of a nonverbal stimulus, commonly referred to as labeling (e.g., the teacher holds up a cup and the child states, ‘‘cup’’). Before teaching the tact, a student should have some words/signs that he can imitate, and he should have some independent mands (Sundberg & Partington, 1998). Trials of other acquired skills should be interspersed with tact trials (e.g., echoic, receptive, matching, imitation). At this stage it is important that the student be able to respond to these ‘‘mixed’’ trials effectively and that the mand, tact, and receptive operants are strong and generalized before moving on to the next stage. When this basic repertoire has been achieved, it is time to consider the receptive function, feature, class, and intraverbal operants. THE RECEPTIVE FUNCTION FEATURE CLASS (RFFC) Receptive means the ability to respond to the instructions or requests of others. The response depends upon the verbal behavior of someone else; for example, if the teacher says ‘‘clap,’’ the student claps. The receptive feature, function, class process teaches students to distinguish items by how they look (e.g., ‘‘give me the one that is orange’’), how they are used (e.g., ‘‘give me the one that you drive’’), or by the class of items a particular object belongs to (‘‘give me the one that is a food’’). THE INTRAVERBAL An intraverbal is a verbal response to a verbal behavior without the presence of nonverbal stimuli (Skinner, 1957). For example, one might answer ‘‘dog’’ when asked, 392
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‘‘What is your favorite pet?’’ A more basic example requires a child to fill in the words to familiar songs. The response is not an echoic, rather an ‘‘answer.’’ The goal is to teach a student to respond in a conversational manner. It can be difficult for a student to distinguish how to respond to the many different word combinations that people use to say the same thing (e.g., ‘‘Where do you live?’’ vs. ‘‘What’s your address?’’). Intraverbals are introduced at the same time as RFFC and when a student has at least 50 mands and tacts (Sundberg & Partington, 1998). Instruction typically begins with simple fill-in-the-blank responses using songs and nursery rhymes and moves to teaching a student to give his name, address, phone number, and the names of animals. Intraverbals pose the most difficult verbal behavior to teach, and many direct teaching trials are needed to master the intraverbal operant. Skinner’s analysis of verbal behavior provides a framework for assessment and language training (Sundberg & Partington, 1998). Therefore, each of the verbal operants should be considered as part of language assessment in addition to the physical properties of a student’s response form (e.g., syntax, pitch, intonation). Verbal behavior breaks down language into these separate verbal operants in the same way that we break down any new skill or behavior we want to teach into the individual steps of that skill. In doing so, we are provided with a more informative language assessment and a more clearly defined ‘‘roadmap’’ of how to teach language to our students with developmental delays. See also discrete trial training; echoic/verbal behavior. REFERENCES Skinner, B. F. (1953). Science and human behavior. New York: Free Press. Skinner, B. F. (1957). Verbal behavior. New York: Appleton-Century-Crofts. Sundberg, M. L., & Partington, J. W. (1998). Teaching language to children with autism or other developmental disabilities. Pleasant Hill, CA: Behavior Analyst, Inc.
FURTHER INFORMATION Lovaas, O. I. (1981). Teaching developmentally disabled children: The me book. Baltimore: University Park Press. Lovaas, O. I. (2003). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed. Maurice, C., Green, G., & Luce, S. C. (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: Pro-Ed.
MICHELE MULLENDORE
VESTIBULAR Responsible for balance and movement, the vestibular system resides in the inner ear and is stimulated by movements and changes in head position. Individuals with vestibular hypersensitivity have low tolerance for activities involving movement and exhibit difficulties with changing speeds and directions. They may experience nausea and/or headaches from spinning and have difficulty sitting still. Hyposensitivity is observed in the individual who seeks out vestibular input by rocking or swinging; this individual might also be clumsy and have difficulty ‘‘switching gears.’’ See also hyperresponsiveness; hyporesponsiveness; proprioception; sensory. KELLY M. PRESTIA 393
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VIDEO MODELING Video modeling is a technique that involves demonstration of desired behaviors, outcomes, and attitudes through active, visual representation. When using a videomodeling intervention, an individual typically watches a video demonstration and then imitates the behavior of the model. Video modeling can be used with peers, adults, or self as a model. The concept of modeling as an intervention technique was first introduced by Albert Bandura in the early 1960s. Bandura demonstrated that children were more aggressive towards a toy after an age-matched model demonstrated aggressive behavior towards the same toy (Bandura & Huston, 1961). Bandura later demonstrated that watching an individual receive reinforcement for a particular behavior (i.e., vicarious reinforcement) would later increase the rates of the behavior in the individual observing the model. Over the past two decades, modeling has been further explored and implemented using video technology. Thus, video modeling has been used across multiple disciplines and populations to teach a wide variety of skills, including motor behaviors, increased athletic performance, and even to decrease anxiety (Dowrick, 1999). Further, it has been effectively used to teach children with autism spectrum disorders (ASD), social skills (Nikopoulos & Keenan, 2004), conversation skills (Charlop & Milestein, 1989), self-help skills (Pierce & Schreibman, 1994), and purchasing skills (Alcantara, 1994). As theorized by Bandura, attention is a necessary component of modeling. That is, a person cannot imitate the behavior of a model if he does not attend to the model’s behavior. Individuals with ASD tend to exhibit overselective attention or attend to irrelevant details of the environment. The use of video modeling allows interventionists to remove irrelevant elements of the modeled skill or behavior through video editing. The removal of irrelevant stimuli, in turn, allows the individual with ASD to better focus on essential aspects of the targeted skill or behavior. In addition, individuals with ASD often exhibit anxiety and distress related to social interactions, which may significantly impact their ability to attend to a learning task. Video modeling can be implemented with minimal human interaction, thereby reducing much of the distress and anxiety related to social interactions. CharlopChristy and Daneshvar (2003) noted that the children with ASD in their study demonstrated increased motivation to watch the model in the video-modeling procedure compared to the live-modeling procedure. Finally, the effectiveness of video modeling might be a result of preference for visual learning. This notion is supported by Sherer, Pierce, Paredes, Kisacky, Ingersoll et al. (2001), who noted that video modeling was most effective for the children in their study who demonstrated prior preference for visual learning, such as video viewing and the use of visual support strategies. Many skills learned via video modeling have been found to generalize across settings and conditions (Dowrick, 1999), and the positive gains made during the videomodeling intervention are maintained for months following the conclusion of the intervention. Classroom teachers, professionals, and parents may find video modeling a promising technique when working with children with autism. See also social skills training. 394
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REFERENCES Alcantara, P. R. (1994). Effects of videotape instructional package on purchasing skills of children with autism. Exceptional Children, 61(1), 40–55. Bandura, A., & Huston, A. (1961). Transmission of aggression through imitation of aggressive models. Journal of Abnormal and Social Psychology, 63, 575–582. Charlop, M. H., & Milestein, J. P. (1989). Teaching autistic children conversational speech using video modeling. Journal of Applied Behavior Analysis, 22, 275–285. Charlop-Christy, M. H., & Daneshvar, S. (2003). Using video modeling to teach perspective taking to children with autism. Journal of Positive Behavior Interventions, 5(1), 12–21. Dowrick, P. W. (1999). A review of self-modeling and related interventions. Applied & Preventative Psychology, 8, 23–39. Nikopoulos, C. K., & Keenan, M. (2004). Effects of video modeling on social initiations by children with autism. Journal of Applied Behavior Analysis, 37, 93–96. Pierce, K., & Shreibman, L. (1994). Teaching daily living skills to children with autism in unsupervised settings through pictorial self-management. Journal of Applied Behavior Analysis, 27, 471–481. Schrer, M., Pierce, K. L., Paredes, S., Kisacky, K. L., Ingersoll, B., & Schreibman, L. (2001). Enhancing conversation skills in children with autism via video technology. Behavior Modification, 25, 140–159.
SCOTT BELLINI
AND JENNIFER
M. AKULLIAN
VIDEO SELF-MODELING Video self-modeling (VSM) is a modeling strategy that allows individuals to learn targeted behaviors by watching videos of themselves successfully performing the behaviors. For children with autism spectrum disorders (ASD), VSM integrates a powerful learning medium (visually cued instruction) with an effective evidence-based intervention modality (modeling). VSM capitalizes on the well-documented success of visually cued instruction in this population by presenting a visual representation of the target skill or behavior (e.g., showing a video of the child initiating or responding during social interactions). The use of VSM has been effective in treating children with a variety of disorders, including selective mutism, autism, attention deficit hyperactivity disorder (ADHD), social anxiety, aggressive/disruptive behavior, and motor problems (Buggey, 1999; Dowrick, 1999). Further, an emerging body of research has demonstrated great promise for the use of VSM as a therapeutic intervention for individuals with ASD (Buggey, Toombs, Gardener, & Cervetti, 1999; Schrer, Pierce, Paredes, Kisacky, Ingersoll, et al. 2001; Wert & Neisworth, 2003). According to Dowrick (1999), VSM interventions typically fall within two categories, positive self-review (PSR) and video feed-forward. PSR refers to individuals viewing themselves successfully engaging in a behavior or activity that is currently in their behavioral repertoire. PSR is best used with lowfrequency behaviors or behaviors that were once mastered, but are no longer. In this case, the individual is videotaped while engaging in the low-frequency behavior and then shown a video of the behavior. PSR is a relatively simple strategy to use from a technological standpoint. However, for very low-frequency behaviors, it requires extensive amounts of raw video footage to capture even a small amount of the target behavior. 395
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Video feed-forward, another category of VSM interventions, may be used when an individual already possesses a component of the target skill in her behavioral repertoire, or is performing the skill at a low level of mastery or autonomy. While feedforward requires additional editing capabilities, as compared to PSR, it typically requires a smaller quantity of raw video footage. ‘‘Hidden supports’’ are an important component of video feed-forward interventions. For instance, the child could be videotaped interacting with peers while an adult provides assistance through cueing and prompting. The adult prompt could then be edited out (hidden) so that when the child views the video segment, she sees herself as independent and successful. Motivation to watch oneself on a video may be enhanced by the portrayal of predominantly positive behaviors. According to Buggey (1999), showing predominantly positive behaviors to children is beneficial because of the confidence they develop from observing their own success. Watching primarily positive and/or successful behaviors of oneself, as opposed to negative and/or unsuccessful behaviors, is also thought to increase attention and motivation to attend to the modeled behaviors. In addition, Buggey states that VSM is preferable to peer and adult modeling because peers or adults do not possess the exact characteristics of the target child. That is, the target individual is more likely to relate to the model because she is the model. Finally, anecdotal evidence and clinical experience suggest that watching videos is a highly desired activity for many children with and without ASD, leading to increased motivation and attention to task. REFERENCES Buggey, T. (1999). Videotaped self-modeling: Allowing children to be their own models. Teaching Exceptional Children, 4, 27–31. Buggey, T., Toombs, K., Gardener, P., & Cervetti, M. (1999). Training responding behaviors in students with autism: Using videotaped self-modeling. Journal of Positive Behavior and Intervention, 1(4), 205–214. Dowrick, P.W. (1999). A review of self modeling and related interventions. Applied & Preventative Psychology, 8, 23–39. Schrer, M., Pierce, K. L., Paredes, S., Kisacky, K. L., Ingersoll, B., & Schreibman, L. (2001). Enhancing conversation skills in children with autism via video technology. Behavior Modification, 25, 140–159. Wert, B. Y., & Neisworth, J. T. (2003). Effects of video self-modeling on spontaneous requesting in children with autism. Journal of Positive Behavior Interventions, 5(1), 30–34.
SCOTT BELLINI
AND JENNIFER
M. AKULLIAN
VINELAND ADAPTIVE BEHAVIOR SCALES–SECOND EDITION (VABS-II) The Vineland Adaptive Behavior Scales–Second Edition (VABS-II; Sparrow, Cicchetti, and Balla, 2005) is used to assess children with autism spectrum disorders in the areas of communication, socialization, motor skills, daily living skills, and maladaptive behavior skills. The VABS-II is available in three forms: interview edition, survey, and expanded forms. The assessment requires between 20 and 60 minutes for parents, caretakers, and teachers to fill out and provide information to the psychologist or social worker. The layout of the assessment allows for comprehensive data collection across settings and individuals. VABS-II has been proven to be an effective 396
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tool in diagnosing Asperger syndrome, autism, developmental delays, mental retardation, and speech and language impairments. REFERENCE Sparrow, S. S., Cicchetti, D. V., & Balla, D. A. (2005). Vineland Adaptive Behavior Scales, Second Edition. Circle Pines, MN: America Guidance Service.
TYI-SANNA JONES VIRTUAL ENVIRONMENT The virtual environment is one form of computer-based learning that has advantages for people with autism in that computer-based programs are logical, predictable, impersonal, and limit distractions and anxiety while permitting the user to repeat a lesson as many times as necessary to learn the material or skill taught. Virtual environments are three-dimensional simulations of an environment created by a computer program. The environment may be imaginary or designed to represent a specific location. Research to date has shown that users with autism spectrum disorders (ASD) generally enjoy working with virtual environments and learn to use programs as or more quickly than peers without autism. Virtual environments can take the form of virtual reality or immersion environments in which the user wears headgear and other equipment that displays the visual component directly in front of the user’s eyes and translates the user’s movements into movements on the visual display. Another form of virtual environment is represented on a computer monitor, much like a typical computer game. The equipment used to immerse a user in a virtual reality is expensive, heavy, and cumbersome, and some users report nausea, headaches, and dizziness. The virtual environments displayed on a desktop computer monitor have no such side effects and are far less expensive, utilizing existing computers and accessory equipment, such as a mouse, keyboard, and joystick. The ability to use standard computer equipment also increases the possibility that the user with autism can use a program at home as well as at school or a training site. Within the virtual environment, the user ‘‘occupies’’ an avatar, a figure representing the user, and generally ‘‘sees’’ the environment through the viewpoint of the avatar, although the user may also be provided with a view of the activity from above. Interaction with the environment takes place through the avatar being controlled by the accessory equipment. Users with autism have reported that their experiences with virtual environments are interesting and fun, and they tend to learn to use the equipment and interact with the environment fairly quickly. There are two types of virtual environments. Those designed for one user at a time are called single-user virtual environments (SVEs) and allow the user to interact with the environment and to have limited, preprogrammed interactions with another. Programs designed for multiple users are called collaborative virtual environments (CVEs). SVEs have been designed to allow users to practice daily activities around home, work, transportation, and cafe settings, and other settings can be developed to allow for a highly varied and flexible training program. Programs introducing new skills can be highly structured with limited choices to allow rehearsal of the new skill in realistic but safe settings. As only the user is involved with the lesson, the user can practice 397
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each skill and scenario at a comfortable speed and as frequently as necessary to master the skill. As the person progresses in mastery of the skill, the programs can introduce more choices and some randomness in placement of objects and simulated people and variations in prompts to encourage flexibility. Once a skill is learned in one setting (for instance, asking if a seat is available in a cafe), it can be practiced in other settings, such as a theater, bus, or social event. Since only one person uses the SVE at a time, the user can learn the skills and visit the same scenario many times without the difficulty and unpredictability of interacting with other people, and without anxiety or fear about any consequences for making an error. The session can be recorded and reviewed by the user and a teacher in order to discuss the user’s performance and any problems that the user may have. To increase social interaction and generalization, a teacher, coach, or peer may sit beside the user during some sessions, particularly after the user has become somewhat familiar with the skill being taught. A CVE involves more than one user in a shared environment where users can interact, work together, and communicate through their avatars. Interaction through avatars, rather than face to face, provides a sense of anonymity and reduces the stress and sense of risk that can occur during direct interaction with another person, but still provides the flexibility and reality of interacting with people rather than strictly with a preprogrammed computer. By reducing the level of threat in communication, and by bringing people who may be widely dispersed together, CVEs function as an assistive technology to improve communication and reduce isolation and the sense of social exclusion for people with autism. Virtual meetings and networks of people with autism can facilitate communication between people with and without autism, since communication through CVEs is slower than face-to-face conversation and can provide people with autism extra time to respond to the avatar of a communication partner. Since avatars can be programmed to show facial expressions, users may have an opportunity to consider and convey their own emotions as well as be aware of the expressions of other avatars. CVEs can also be used for group lessons for dispersed students with autism and can provide a setting for more advanced and flexible social skills instruction than is possible in a SVE where the user can ‘‘interact’’ with characters only in the ways that are built into the program. Users of a CVE can also work together in role-playing scenarios to practice social skills, and can discuss problems that arise with each other or with a teacher, as CVEs can also be recorded to allow a user to review the session and consider alternative ways of handling problems that arise. Although the use of SVEs and CVEs for the teaching of skills is promising, they are not appropriate for all users, nor do they offer a complete training program by themselves. Studies to date have involved only persons with autism spectrum disorders who do not have mental retardation. A minority of users in studies have shown difficulty staying on task in virtual environments, and another minority have had difficulty understanding that virtual environments are representational of real-life settings and activities. Thus when an individual with autism is first introduced to the use of virtual environments, a teacher should observe to make sure that the student is able to follow instructions and stay on task, and should talk with the user and make sure that the user is able to understand that the virtual environment represents reality and that other avatars represent people. 398
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Another problem with using virtual environments to teach skills is that no study to date has provided evidence that users of virtual environments and computer-based learning are able to generalize the learned skills to different environments at significant levels. However, existing studies have been of very short duration and have had few participants. Even in those studies, however, individuals who have used the programs more have shown a greater ability to generalize than participants who used the programs for shorter periods of time. Thus it is possible that studies that involve longer periods of use may provide empirical evidence of generalization by users. Finally, it should be noted that the use of virtual environments is only one part of any learning package, especially for social skills. Although SVEs and CVEs can help the user develop appropriate skills and a sense of self-confidence that may make real-life experiences less stressful and more productive, the use of SVEs and CVEs should be combined with group work, discussion, and experience in real-world settings to improve mastery and generalization. See also assistive technology; social skills training. FURTHER INFORMATION Cobb, S., Beardon, L., Eastgate, R., Glover, T., Kerr, S., Neale, H., et al. (2002). Applied virtual environments to support learning of social interaction skills in users with Asperger’s syndrome. Digital Creativity, 13(1), 11–22. Golan, O., & Baron-Cohen, S. (2006). Systemizing empathy: Teaching adults with Asperger syndrome and high functioning autism to recognize complex emotions using interactive multimedia. Developmental and Psychopathology, 18, 591–617. Moore, D., Cheng, Y., McGrath, P., & Powell, N. J. (2005). Collaborative virtual environment technology for people with autism. Focus on Autism and Other Developmental Disabilities, 20, 231–243. Moore, D., McGrath, P., & Thorpe, J. (2000). Computer-aided learning for people with autism—a framework for research and development. Innovations in Education and Training International, 37(3), 218–228. Parsons, S., & Mitchell, R. (2002). The potential of virtual reality in social skills training for people with autistic spectrum disorders. Journal of Intellectual Disability Research, 46, 430–443. Parsons, S., Mitchell, P., & Leonard, A. (2004). The use and understanding of virtual environments by adolescents with autistic spectrum disorders. Journal of Autism and Developmental Disorders, 34(4), 449–466. Parsons, S., Mitchell, P., & Leonard, A. (2005). Do adolescents with autistic spectrum disorders adhere to social conventions in virtual environments? The National Autistic Society, 9(1), 95– 117. Rajendran, G., & Mitchell, P. (2000). Computer mediated interaction in Asperger’s syndrome: The bubble dialogue program. Computers and Education, 35, 189–207. Silver, M., & Oakes, P. (2001). Evaluation of a new computer intervention to teach people with autism or Asperger syndrome to recognize and predict emotions in others. The National Autistic Society, 5(3), 299–316.
HYUN-JEONG CHO
VIRUSES A virus is a submicroscopic infectious organism that reproduces itself in biological entities (such as human cells) and may cause damage or disease. It has been claimed that, like other diseases, autism can be caused by slow-moving viruses that affect brain development. The cytomegalovirus is one virus that has been connected to autism 399
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spectrum disorders. Maternal rubella is another virus that has been studied for connections to autism. Rubella was once a very common disease, but since inoculation efforts has been almost unheard of in the United States. Although rubella has been much less of a concern due to mass vaccinations, in light of the controversy over the possible connections between autism and vaccinations, and with the possibility of some people forgoing inoculations of childhood, the rubella virus cannot be forgotten as a possible culprit. FURTHER INFORMATION Merriam-Webster. (2005). Virus. Retrieved June 30, 2006, from http://www2.merriam-webster. com/cgi-bin/mwmednlm?book=Medical&va=virus. Rutter, M. (2005). Aetiology of autism: Findings and questions. Journal of Intellectual Disability Research, 49, 231–238.
PAUL G. LACAVA VISUAL-MOTOR Visual-motor describes any activity that requires the use and coordination of vision and movement simultaneously. Examples of visual-motor skills include drawing, completing a puzzle, or painting. KELLY M. PRESTIA VISUAL STRATEGIES Visual strategies refer to ways of using visual stimuli such as photos, drawings, and so on, to enhance the communication process. A primary purpose for using visual strategies is to support understanding. Visual strategies provide information in a form that many students can understand more easily than auditory information. Other terms used include visual supports, visual tools, visual cues, or visually mediated communication. Most students with autism spectrum disorders (ASD) and many others with communication or behavior challenges demonstrate strength in visual learning compared to their auditory abilities. That means they understand what they see better than what they hear. Yet we tend to communicate with them primarily by talking (Hodgdon, 1995). Temple Grandin, a well-known speaker and author with autism, describes her unique visual learning style in her book Thinking in Pictures (1995). Using visual strategies to support communication capitalizes on a person’s ability to gain information from the sense of sight. Photographs, line drawings, computer clip art, pictures from catalogs or magazines, food labels, signs, logos, objects, and written language can be used as visual tools to support communication. Video is another visual medium that is proving effective. Visual supports can include the following: Body Language Facial expressions, body movement, pointing, eye contact.
Cues in the Natural Environment Furniture arrangement, signs in the environment (in/out, men/women), menus, directions on a vending machine.
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Commonly Used Tools for Organizing and Gaining Information Calendar, day planner, TV guide, shopping list, cooking instructions.
Specially Designed Tools for Giving Information To develop schedules, provide choices, give information, give directions, establish rules, teach skills, develop self-regulation, and more.
One goal when using visual strategies is to teach students to identify, understand, and respond appropriately to the visual cues and information that already exist in the environment. Another goal is to identify their specific communication needs and challenges as a basis for creating visual tools that give the specific information they need to understand. Visual tools are easy to use. We can become more effective communicators if we use simple language and support our communication by showing the student something visual to help him understand what we are saying. Sometimes visual tools are hung on the wall or refrigerator or placed in communication books so the student can easily access them when he needs them. REASONS TO USE VISUAL STRATEGIES Visual strategies assist students in processing language, organizing their thinking, remembering information, and many other skills necessary to participate and communicate effectively. The following are some of the possibilities. Visual tools can provide structure to help create an environment that is more predictable and understandable as well as present information. They can be used at home or school or transported to other environments. For example: ¥ Schedules are the most common visual tools. They help students know what is happening during the day and anticipate transitions from one activity to another. ¥ Visual timers create a visual way for students to understand the passage of time and to assist with transition. ¥ Task organizers or step-by-step directions guide students through a series of steps to accomplish a task. ¥ Choice boards display the options available to choose from. ¥ Classroom or home rules help students remember what to do or state options to unacceptable behavior.
A powerful purpose for visual strategies is to give students information. It is common to give students information verbally and to assume they understand. Anxiety or behavior problems can emerge when students really don’t understand, or they don’t remember what to do or how to handle a situation. For example: ¥ People locators help students understand where significant people are, when they will leave, or when they will return. ¥ Transition and travel helpers can prepare students for predictable activities and routines or for excursions that are not part of the normal routine. ¥ Behavior helpers guide students to prepare for activities and anticipate what will happen and what will be expected of them.
Video as a teaching medium is a comparatively new visual tool. It is becoming useful for teaching appropriate social and communication behavior. The value of video is 401
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that it captures the movement of the social world. It has been used successfully for teaching a variety of skills including imaginative play, correct behavior, and perspective taking (Hodgdon, in press). WHY STUDENTS BENEFIT FROM VISUAL STRATEGIES Communication is one of the core deficits in ASD. Communication is complex and there are many reasons why students may have difficulty. For example, research suggests these students experience difficulty shifting and reestablishing attention (Courschene, 1991). Children with autism tend to have particular difficulty attending to auditory input and may prefer visual input (Anzalone & Williamson, 2000). Greenspan and Wieder (1998) found that 97 percent of their sample of children with autism showed significant receptive language deficits. Many of the difficulties these students encounter as they attempt to follow life routines, handle change and transition, demonstrate appropriate behavior, or participate in social opportunities are directly related to their communication challenges. Speech is transient. Consider that an auditory message may disappear before a student has focused his attention enough to receive it. These children do not easily understand what is happening around them, what is changing, or what the rules are. The result can be frustration, anxiety, tantrums, and more. In contrast, most of these students demonstrate a preference for visual information. Visual supports are helpful because the visual message stays long enough for the student to establish attention and receive information. Using visual strategies to support understanding can significantly affect a student’s ability to communicate more successfully, develop appropriate social skills, regulate behavior in various environments, and participate more independently. The challenge is to determine how using visual supports will meet each student’s individual needs. COMMON QUESTIONS Traditionally, communication boards and other augmentative communication supports have been used to help nonverbal students or those with limited verbal ability express themselves better. The current use of visual strategies for supporting understanding has shifted that focus. It is appropriate to use visual tools to aid understanding for both nonverbal and verbal students. Visual strategies are not just for young children. They are appropriate for students of all ages. Most of us use a calendar or a day planner and other visual supports to help organize our own lives. Students with ASD can benefit from the same tools; however, they generally need more visual supports. Visual strategies are tools for life that can be modified and adapted to meet students’ changing needs as they grow into adulthood. Visual strategies provide the support students need to participate more appropriately and independently in their life activities. CASE STUDY Problem Stacy’s Mom was taking her to the doctor for a check-up. Stacy began to cry and bite her wrist. She kept yelling, ‘‘No shot!’’ Her behavior escalated, making it difficult for Mom to try to get her into the car. 402
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Cause Even though Mom told Stacy she was not going to get a shot this time, Stacy was nervous because she remembered her last trip to the doctor. She remembered getting a shot that hurt. Stacy needs a lot of information because she has a memory of fear and pain. She doesn’t have the communication skills to discuss the situation adequately, so she is expressing her fear with her behavior. Solution Giving Stacy information in a form that she understands will help her anticipate the event and demonstrate more appropriate behavior. One or more of the following options should help the situation: (a) tell her verbally and visually where she is going; (b) give her visual information about the sequence of events; (c) give her information in a visual form about what will happen and what will not happen; and (d) create a visual tool that will prompt something to say or do when she goes to the doctor’s office. Result Mom developed some visual tools to communicate the information Stacy needed. When Stacy had more information, she had a successful doctor visit (Hodgdon, 1999). REFERENCES Anzalone, M. E., & Williamson, G. G. (2000). Sensory processing and motor performance in autism spectrum disorders. In A. Wetherby & B. Prizant (Eds.), Autism spectrum disorders: A transactional developmental perspective (pp. 145–146). Baltimore: Brookes Publishing Co. Courschene, E. (1991). A new model of brain and behavior development in infantile autism. Autism Society of America Conference Proceedings. Indianapolis, IN. Grandin, T. (1995). Thinking in pictures: And other reports from my life with autism. New York: Doubleday. Greenspan, S., & Wieder, S. (1998). The child with special needs: Encouraging intellectual and emotional growth. Reading, MA: Addison-Wesley. Hodgdon, L. (1995). Visual strategies for improving communication. Troy, MI: QuirkRoberts Publishing. Hodgdon, L. (1999). Solving behavior problems in autism. Troy, MI: QuirkRoberts Publishing. Hodgdon, L. (in press). How to teach social skills with visual strategies. Troy, MI: QuirkRoberts Publishing.
FURTHER INFORMATION Hodgdon, L. (1995). Solving social-behavioral problems through the use of visually supported communication. In K. A. Quill (Ed.), Teaching children with autism: Strategies to enhance communication and socialization (pp. 265–286). New York: Delmar Publishers Inc. Hodgdon, L. (2005). 25 reasons to use visual strategies. Another view with Linda Hodgdon: Effective solutions for autism, Asperger’s syndrome and more, 1(4). Retrieved April 23, 2005, from http:// www.lindahodgdon.com/newsletters.html. Quill, K. A. (1995). Visually cued instruction for children with autism and pervasive developmental disorders. Focus on Autistic Behavior, 10(3), 10–20.
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VISUAL SUPPORTS. See Visual Strategies 403
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VOCATIONAL REHABILITATION The Division of Vocational Rehabilitation Services (VR) is a federally funded agency that provides job training for adult individuals with disabilities. A vocational rehabilitation counselor is assigned when the individual applies for services. Therefore, the individual with the disability needs to seek out the services from VR; VR will not seek out the individual. The counselor will assess the needs of the individual to determine whether the individual is eligible for services. Eligibility is determined based on the level of disability the individual has and the amount of work the individual is capable of doing. Service funding availability changes depending on the amount of money the federal government provides. When funding is low, VR goes on ‘‘Order of Selection,’’ which only allows monies for individuals with moderate to severe disabilities who were assessed as able to work in the community with some support. An example of a person with a moderate to severe disability that VR would still consider employable in the community is an individual with bipolar disorder who is taking medication but still needs assistance with social interactions, anger management, and controlling negative thoughts and actions. This individual would be eligible for job placement services and job coach support on the job to maintain employment and develop appropriate job social skills. Students who are 18 months prior to graduation from high school can apply with VR services to begin the assessment process and paperwork. Upon graduation, if the individual qualifies, the VR counselor will assist the individual in finding and maintaining competitive, paid employment in the community. Short-term job coaching assistance is provided depending on the need of the individual and the demands of the job. Job coaching ceases after a determined amount of time (usually 90 days), at which time the individual will need to maintain performance on the job with natural supports from employees within the job. If the individual wants to change employment, is promoted within his or her current job, or has job tasks change within the job, the VR counselor can reopen the case and provide job training services again for the benefit of promotion and job retention. See also Individualized Transition Plan; transition planning. BETH CLAVENNA-DEANE
VOCATIONAL REHABILITATION PROGRAMMING Each state has a vocational rehabilitation (VR) agency that is designed to help people with disabilities enter the workforce, learn a new skill or trade, or return to the workforce after an extended absence. High school students with disabilities can receive transition services that are designed to make the move from the school environment into the community as a young adult more successful. Students are taught work readiness skills such as teamwork, communication, how to dress, the importance of timeliness and basic office skills such as copying, collating, and filing. These services can be provided in a variety of settings to maximize the student’s developmental potential. For those who are able, VR services can include enrollment in a local college or trade school and community job placements where skills can be learned or advanced. Job coaches or VR counselors often follow the individual into the 404
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community for a period of time to provide appropriate levels of supervision or support to both the individual and the employer. To increase access to other federal programs, VR agencies are also able to help people apply for Supplemental Security Income (SSI), subsidized housing, and health care programs, among many things. As with SSI and most other federal programs, the actual services available at VR agencies do vary from state to state, so it is best to contact your state agency directly to get information about what is in your area. The Social Security Administration maintains the following Web site with direct links to each state agency to facilitate access to services: http://www.ssa.gov/work/ServiceProviders/rehabproviders.html. See also Individualized Transition Plan; postsecondary education; transition planning. SHERRY MOYER
VOTING One context in which disability is defined is in federal and state laws, which address the electoral participation of individuals with disabilities. Federal laws pertaining to individuals with disabilities and their voting rights include the National Voter Registration Act of 1993 (NVRA), and; the Americans with Disabilities Act (ADA, 1990), which provides that no qualified individual with a disability may be excluded from participation in, or denied the benefits of the services, programs, or activities, or subjected to discrimination by public entities, such as state and local government. Specially, the NVRA requires that all state-funded agencies offer voter registration. State-funded facilities may include public schools, facilities providing disability services, and voter registration agencies. The ADA ensures that polling sites provide reasonable accommodations, technical assistance materials, and assistance with registering to vote and casting a ballot. In contrast to these federal laws, state laws specifying the qualifications of the electorate typically disenfranchise some individuals with disabilities. A majority of states disenfranchise on the basis of ‘‘mental incompetence,’’ or ‘‘mental incapacity,’’ to characterize who will not be allowed to vote. Federal law acknowledges the physical and communication barriers that affect electoral participation, but fails to appreciate implications of state policies that exclude people based on perceived incompetence of cognitive and emotional impairments. The issue of physical accessibility has required states to ensure voters with cognitive and emotional disabilities have access to the electoral process and not be subject to accessibility barriers (ADA, 1990). In 1982, before the ADA was passed, the American Bar Association proposed that competency testing be objective, and suggested a competent voter be defined as any person able to provide the information, orally, in writing, through an interpreter, or interpretive device that is reasonably required of all persons seeking to register to vote, to be considered a qualified voter, and shall be registered to vote and allowed to cast a ballot in any election held (Schriner, Ochs, & Shields, 2000). In October 2002 President George W. Bush signed into law the Help America Vote Act (HAVA), Public Law 107-252. HAVA was designed to modernize election equipment, facilitate easy use of equipment, maintain confidentiality and independence, and increase accessibility for persons with disabilities. HAVA was further intended to provide ‘‘talking’’ voting machines, large print or braille, interpretation for the 405
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hearing-impaired, a more simplified process to make it understandable for the intellectually impaired, and to protect the privacy rights of such voters. Many resources lend to simplification of the electoral process. Because many individuals use written communication rather than face-to-face interactions, a large number of resources are available online. The use of computers and the Internet has made it possible for many individuals to present their perspective when they lack adequate communication and socialization skills. For individuals who want to participate in the democratic process, they must be registered to vote prior to an election and have appropriate identification. For further information, contact the local election office or go to www.declareyourself.org/ index.php. REFERENCES Americans with Disabilities Act, 42 U.S.C. §§ 12101-12213 (1990). Help America Vote Act. (2002). Public Law 107-252. U.S. Code. 42, 2002. [section] 15301 et seq. National Voter Registration Act (1993). Public Law 103-131. U.S. Code 42, 1993. Sec. 2 et seq. Schriner, K., Ochs, L., & Shields, T. (2000). Democratic dilemmas: Notes on the ADA and voting rights of people with disabilities. Berkeley Journal of Employment and Labor Law, 21(1), 437–472.
FURTHER INFORMATION Declare yourself. (n.d.). Retrieved November 9, 2006 from www.declareyourself.org/index.php. U.S. Department of Justice (2005). A guide to disability rights laws. Retrieved November 9, 2006, from www.usdoj.gov/crt/ada/cguide.htm.
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W WAIT TRAINING Wait training is teaching a child to wait using structured, incremental training sessions. Waiting is taught through short trials or sessions in which something desirable to the child is placed in front of her with the command to wait. Prompting as needed, the student is given the item after waiting a set period of time. Normally a baseline is recorded, and this type of program begins at or slightly above the baseline. To begin, the wait interval could be as short as 1–2 seconds. Wait training is most often done in the early stages of intervention. KATIE BASSITY WEAK CENTRAL COHERENCE. See Central Coherence WECHSLER INDIVIDUALIZED ACHIEVEMENT TEST– SECOND EDITION (WIAT-2) The Wechsler Individualized Achievement Test–Second Edition (WIAT-2; Wechsler, 2001) is a very common assessment tool used in schools to measure the academic achievement of students. The WIAT-2 consists of nine subtests: word reading, pseudoword decoding, reading comprehension, spelling, written expression, numerical operations, math reasoning, listening comprehension, and oral expression. The WIAT-2 is a measurement tool for individuals ranging in age from 4 to 85 years and can be used to assess both low- and high-functioning individuals. It is useful for assessing achievement skills, determining educational placement, as well as developing curriculum. Administration time ranges from 30 to 75 minutes. REFERENCE Wechsler, D. (2001). Wechsler individualized achievement test (2nd ed.). San Antonio, TX: Psychological Corporation.
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WECHSLER INTELLIGENCE SCALES FOR CHILDREN–FOURTH EDITION (WISC-IV)
WECHSLER INTELLIGENCE SCALES FOR CHILDREN– FOURTH EDITION (WISC-IV) The Wechsler Intelligence Scales for Children–Fourth Edition (WISC-IV; Wechsler, 2003) is a cognitive assessment generally given by a psychologist to determine cognitive ability of school-aged children. This test provides a full-scale IQ score obtained from subtests in two subscales: verbal and performance scales. The two scales allow the examiner to assess a child in tasks that require verbal and nonverbal activities to evaluate performance and knowledge in: (a) memory; (b) factual information; (c) language; (d) attention; (e) concentration; (f) abstract, spatial, and visual problem solving; (g) fine motor and visual coordination; and (h) processing speed. This assessment tool is widely used and known to be helpful in diagnostic, placement, and planning for children with an array of exceptionalities. REFERENCE Wechsler, D. (2003). Wechsler intelligence scales for children–fourth edition. San Antonio, TX: Harcourt Assessment, Inc.
TYI-SANNA JONES WELCH METHOD THERAPY THE TREATABLE BASIS OF AUTISM Clinical observations in the 30-year psychiatric practice of Martha G. Welch, MD, form the framework for her innovative treatment and research efforts. It is widely agreed that autism spectrum disorders (ASD) stem from genetic/environmental insults that are not yet identified. Whatever the cause, we are now focused on intervening in the subsequent events that stem from the insults. Further, we theorize that such insults share a common physiological effect: interruption and/or arrest of key developmental programs. Over time, if uncompensated, the cascade leads to adverse conditioning of stress adaptation networks, in which case the infant will present with various interrelated psychological, neurological, and immunological pathology, including autism. Our clinical experience has shown that it is possible, regardless of etiology, for the family to successfully treat autism and related developmental disorders by reinstating components of intense parent-child interaction. Our experimental research and laboratory findings support the idea that it will be possible at some point in the future to treat autism and related developmental disorders by intervening in stress mechanisms of the child with administration of exogenous brain/gut peptide combinations. In Dr. Welch’s practice, two seemingly disparate groups of patients, autistic children and maternally deprived orphans, shared two symptom complexes: (a) behavioral symptoms, such as lack of direct eye contact, indiscriminate approaches toward strangers, inability to respond to normal maternal nurturing; and (b) gastrointestinal (GI) symptoms, such as gut motility abnormalities, discomfort, diarrhea, and odd and restricted food preferences. Dr. Welch developed an intervention that engages intense parent-child interactions as a means of positively conditioning stress adaptation responses. This intervention has led to concurrent amelioration of both behavioral and gut symptoms. In many cases following intensive intervention, direct eye contact between mother and child ensued, the child was able to benefit from normal nurturing, adverse behaviors were dramatically reduced, and GI symptoms abated. Because 408
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mothers often described feeling as though they had just given birth after the therapy, Welch theorized that the bonding peptide oxytocin had been released. She attributed the striking post-treatment changes observed in the child’s behavioral and gut health to the simultaneous release of natural endogenous peptides, including brain/gut peptides secretin as well as oxytocin. These collective clinical observations led to a theory that brain and gut disorders in autism and behavioral disorders of low-nurture orphans share a common dysregulation of underlying stress mechanisms. RESEARCH BACKGROUND The Welch Laboratory of Childhood Regulatory Disorders and the Ruggiero Laboratory of Behavioral Neuroanatomy at Columbia University are engaged in efforts to translate this clinical experience into an experimental design of new treatments for autism. The work supports a new paradigm for the treatment of mental illness, based on a theory that emotions and emotional behavior stem from dysregulations of a unified stress-adaptation brain-gut network. Peptide mechanisms critical in the conditioning of the infant adaptive behavioral patterns are abnormal in developmental disorders such as autism. Neuropeptides such as secretin and oxytocin are being tested in animal models to determine their role in compensating for the effects of stress on the brain and gut. This idea originated from Welch’s clinical experience treating genetic/congenital ASD, late-onset ASD, and children with other developmental disorders, all of whom shared GI symptoms (see Figure 20). Medical examination of children with autism reveals inflammation in the brain (Vargas, Nascimbene, Krishnan, Zimmerman, & Pardo, 2005) and gut, as well as abnormalities of neurotransmitters, brain/gut peptides, and cytokines (Ashwood, Anthony, Torrente, & Wakefield, 2004). The high incidence of seizure disorders and familial autoimmunity suggests that autism is a visceral disorder. Pathological visceral
Figure 20 Differentiating the Welch Method
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activity patterns transmit via the vagus nerves and neurohumorally to visceral/ emotional brain regions abnormal in autistic children. We theorize that the viscera may be a site of pathology causing secondary developmental delays of brain regions abnormal in autism spectrum disorders. Deserving of clinical study is the functional integrity of the GI tract in family members of children with autism. During critical periods of development, visceral diseases generating pathological stress-related activity lead to impairments of perceptual, emotional, and social development, all of which are observed in children with autism. The research literature provides ample evidence that these children exhibit classic stress-induced inflammatory symptoms in gut and brain areas that are acted upon by neuropeptides. Peptides are important in determining stress-response patterns. Their actions are the molecular basis of optimal mother-infant interactions, and they are naturally secreted on physiological demand in response to stress. As such, they are critical in regulating stress and maintaining homeostasis. It follows that therapies intervening in the peptide mechanisms activated by mother-infant interaction will be most effective in treating developmental disorders such as autism. The role of secretin and oxytocin in the treatment of autism is emerging (see Figure 21). Patients with autism demonstrate symptoms and sites of pathology that respond in experimental animal models to secretin and oxytocin administration. For example, a recent clinical study concluded that secretin ameliorated symptoms of autism in a subgroup of children with GI abnormalities (Kern, Espinoza, & Trivedi, 2004). Another clinical study showed that behavioral symptoms in autism have responded to oxytocin peptide treatment (Hollander et al., 2003). In addition, a growing body of research is providing important information about the role of secretin and oxytocin in both the gut and the brain. In an example of environmental insult, our preliminary studies of induced colitis in a rat model demonstrated that systemic combined treatment with Figure 21 The Role of Secretin and Oxytocin
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secretin and oxytocin reduced peripheral inflam- Figure 22 Secretin and Oxytocin Research mation and its neurological manifestations in the brain (Welch et al., 2003b). In studies designed to determine behavioral regulatory actions, secretin and oxytocin were found to activate the visceral thalamic and hypothalamic stress axes (Welch et al., 2003a). Secretin and oxytocin were synthesized by hypothalamic and gut and vascular cells in response to homeostatic challenges, such as visceral stress or metabolic stressor (Welch et al., 2003a). Visceral inflammation activated visceral/emotional brain regions known to be abnormal in autism, thus, providing important evidence of a connection between visceral inflammation and brain disturbance (Welch et al., 2005). In another experiment that further demonstrated a connection between brain/gut disturbance and peptides, we showed that secretin, like oxytocin, activated many of the same visceral/emotional brain regions that are dysregulated in chronic disorders such as autism. In a third experiment we clarified the structural basis for the mechanisms of individual action of secretin and oxytocin (see Figure 22). That is, we found that secretin as well as oxytocin are synthesized in the hypothalamus and may act on structures involved in the pathophysiology of autism (Welch & Ruggiero, in press). In the future, the long-term benefit of peptide therapy may be demonstrated by the reversal of the actions of stress transmitters and stress peptides as well as the alteration of receptor numbers or combinations abnormal in chronic mental and visceral metabolic disorders. Clinical trials will be necessary to assess the efficacy of systemic administration of combined secretin/oxytocin or other combinations of peptides in resolving visceral inflammation, autism, and autism with GI symptoms. We also seek a marker expressed by brain and gut that can identify a precursor stage of autism, providing a means of early diagnosis and early intervention, which would in turn halt the progression of the brain changes that are stress induced. ABNORMAL STRESS ADAPTATION IN AUTISM The development of the infant’s stress adaptation response patterns is largely dependent on caregiver-infant interactions. This interaction up-regulates neuropeptides and activates key genetic developmental programs. Key developmental genetic programs are altered or silenced when the mother-infant interaction is rendered ineffective (Caldji, Diorio, Anisman, & Meaney, 2004). The infant is thus unable to respond to the parental care on which his physiological state depends. Unable to receive stress modulation, the infant reacts with adverse behavioral symptoms: inability to nurse, inability to maintain direct eye contact, abnormal face recognition with 411
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Figure 23 Positive Stress-Response Conditioning Cycle
failure to respond to normal cues, inability to learn or attend to important environmental stimuli, inability to habituate to background stimuli, stereotypes, and bizarre fixations on objects or actions. If left untreated—if normal responsiveness is not restored—some of the child’s critical developmental programs may remain inactivated or silenced. In this event, the stress effects on the brain and viscera continue on a downward course that gets progressively worse and eventually ends in a range of psychological, neurological, behavioral, and immunological pathology, including autism spectrum disorders. Professionals and parents may never know what caused the child’s abnormal response patterns, or in the case of late-onset autism, what precisely caused the regression in behavior. Causes may include any number of environmental stressors, possibly vaccinations, with or without periods of physical illness in a child genetically predisposed to autoimmunity. In our experience, the cause of the abnormality is less important than the fact that the abnormal stress responses can be reversed (see Figure 23). If reversal of stress cascades is accomplished early enough in the child’s development—in the case of autism before age 4 or 5, or in the case of other autism spectrum disorders before age 10 or 11—the negative cascade of stress responses may be reduced greatly or completely reversed.
TREATMENT PROGRAM The earlier the family starts to address the brain and behavioral problems by reinstating important components of parent-child interaction, the sooner typical development will resume (see Figure 24). We believe that very early reversal of Figure 24 Effects of Family Therapy adverse stress response patterns can reverse the on-going cascade of brain damage. If the family is performing the therapy effectively after training, they should achieve results in the child’s ability to handle stress almost immediately, such as at the end of a successful 2-day treatment program. Even the most resistant child responds to the therapy. Such relatively rapid results may be supported by recent research at McGill University in Canada, where it has been discovered that genetic programs are activated in an animal model by intense mother-infant interaction (Weaver et al., 2004). It takes just 96 hours for this 412
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activation of genetic stress management programs to occur. It is important to note that these genes are conserved throughout mammalian development, and humans and animals express similar genetic stress adaptation programs. We theorize that intense parent-child therapy releases peptides and helps the family to activate those silenced genetic programs. In summary, the etiology and pathophysiology of autism are little understood. However, inasmuch as autism involves adverse stress response patterns, interventions that target mechanisms of stress adaptation offer a promising approach. Systemic administration of antistress peptides may be an effective preventive measure. Our research efforts continue to seek support for therapeutic administration of neuropeptide combinations. Outcomes of such experiments could accelerate the development of novel naturalistic pharmacological treatments that do not have the side effects of current drugs. Until then, Welch Method therapy allows the parents to intervene naturally in the stress adaptation conditioning of autistic spectrum disorder children, thereby activating, as we theorize, important antistress gene programs and halting the harmful cascade that results from unmitigated stress. See also environment; genetics. REFERENCES Ashwood, P., Anthony, A., Torrente, F., & Wakefield, A. J. (2004). Spontaneous mucosal lymphocyte cytokine profiles in children with autism and gastrointestinal symptoms: Mucosal immune activation and reduced counter regulatory interleukin-10. Journal of Clinical Immunology, 24, 664–673. Caldji, C., Diorio, J., Anisman, H., & Meaney, M. J. (2004). Maternal behavior regulates benzodiazepine/GABAA receptor subunit expression in brain regions associated with fear in BALB/c and C57BL/6 mice. Neuropsychopharmacology, 29, 1344–1352. Hollander, E., Novotny, S., Hanratty, M., Yaffe, R., DeCaria, C. M., Aronowitz, B. R., et al. (2003). Oxytocin infusion reduces repetitive behaviors in adults with autistic and Asperger’s disorders. Neuropsychopharmacology, 28, 193–198. Kern, J. K., Espinoza, E., & Trivedi, M. H. (2004). The effectiveness of secretin in the management of autism. Expert Opinions on Pharmacotherapy, 5, 379–387. Uvnas-Moberg, K. (1989). The gastrointestinal tract in growth and reproduction. Science America, 261, 78–83. Vargas, D. L., Nascimbene, C., Krishnan, C., Zimmerman, A. W., & Pardo, C. A. (2005). Neuroglial activation and neuroinflammation in the brain of patients with autism. Annual Neurology, 57, 67–81. Weaver, I. C., Cervoni, N., Champagne, F. A., D’Alessio, A. C., Sharma, S., Seckl, J. R., et al. (2004). Epigenetic programming by maternal behavior, National Neuroscience, 7, 847–854. Welch, M. G., & Ruggiero, D. A. (in press). GABA in autism and related disorders: Predicted therapeutic role of secretin and oxytocin in autism: Implications for treatment of mental illness. International review of neurobiology. Burlington, MA: Elsevier. Welch, M. G., Keune, J. D., Welch-Horan, T. B., Anwar, M., Anwar, N., & Ruggiero, D. A. (2003a). Secretin activates visceral brain regions in rats including areas abnormal in autism. Cellular and Molecular Neurobiology, 23, 817–837. Welch, M. G., Welch-Horan, T. B., Keune, J. D., Anwar, N., Anwar, M., Ludwig, R. J., et al. (2003b). Neurohormonal resolution of genetic and acquired IBD and secondary brain activation in areas abnormal in autism. (Prog. # 318.5 2003 Abstracts). Washington, DC: Society for Neuroscience Abstracts. Welch, M. G., Welch-Horan, T. B., Anwar, M., Keune, J. D., Anwar, N., Ludwig, R. J., et al. (2004). Secretin: hypothalamic distribution and hypothesized neuroregulatory role in autism. Cellular Molecular Neurobiology, 24, 219–241.
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WILBARGER PROTOCOL Welch, M. G., Welch-Horan, T. B., Anwar, M., Anwar, N., Ludwig, R. J., & Ruggiero, D. A. (2005). Brain effects of chronic IBD in areas abnormal in autism and treatment by single neuropeptides secretin and oxytocin. Journal of Molecular Neuroscience, 25, 259–274.
MARTHA G. WELCH AND DAVID A. RUGGIERIOWILBARGER PROTOCOL Designed by Patricia Wilbarger, the Wilbarger Protocol is a specific brushing technique to reduce tactile defensiveness by providing deep pressure to the skin on the arms, back, and legs using a surgical brush. KELLY M. PRESTIA WISCONSIN CARD SORTING TEST (WCST) The Wisconsin Card Sorting Test (WCST; Grant & Berg, 2003) is a neuropsychological test of ‘‘set-shifting.’’ The WCST is used to assess perseveration, abstract reasoning, and the capacity to modify problem-solving strategies when needed. It has been considered a measure of executive function because of its reported sensitivity to frontal lobe dysfunction. The assessment includes 128 response cards and 4 stimulus cards. The subject taking the test is asked to sort the response cards onto the stimulus cards based upon sorting rules. The WCST has been widely used with individuals ages 6.5–89 years. Administration time ranges from 20 to 30 minutes. REFERENCE Grant, D. A., & Berg, E. A. (2003). Computerized Wisconsin card sorting test version 4. Lutz, FL: Psychological Assessment Resources, Inc.
AMY BIXLER COFFIN WOODCOCK-JOHNSON PSYCHOEDUCATIONAL BATTERY–REVISED: TESTS OF COGNITIVE ABILITY The Woodcock-Johnson Psychoeducational Battery–Revised: Tests of Cognitive Ability (WJPB-R; Mather & Jaffe, 2003) is both an individual cognitive and achievement test. There are two batteries of tests, the Standard Battery and the Extended Battery. Both versions include 11 subtests incorporating reading, math, and writing/ spelling concepts. The WJPB-R is a useful measure for the assessment of school performance across a variety of academic areas and ages. The tool assesses cognitive achievement as well as scholastic interests. The WJPB-R can be administered on individuals ranging in ages 3 through 80. REFERENCE Mather, N., & Jaffe, L. (2003). Woodcock Johnson III–reports. Indianapolis, IN: Wiley.
AMY BIXLER COFFIN WORK ADJUSTMENT PERIOD The work adjustment period is offered through most vocational rehabilitation agencies to allow for opportunities to train people who have either never entered the workforce or have few work readiness skills. Training provided during a work adjustment may include interviewing skills, resume writing, staying on-task, hygiene, time management, assessing vocational interests or skills, and potential job matches. For the person with an autism spectrum disorder, the very notion of how to plan a future 414
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can be quite overwhelming simply because of a lack of exposure to community or employment experiences. Many of the skills we take for granted, like organizing our priorities and successfully planning to carry them out, are a great challenge, requiring direct instruction and support to be completed successfully. The work adjustment period is a safe test period for people to test out their skills, gain self-confidence, and discover what social expectations are associated with the work environment. FURTHER INFORMATION Nuehring, M., & Sitlington, P. (2003). Transition as a vehicle: Moving from high school to an adult vocational service provider. Journal of Disability Policy Studies, 14(1), 23–36.
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Y YEAST-FREE Yeast–free refers to a diet that controls yeast intake and strives to starve the yeast organism of sugars and simple carbohydrates. Complex carbohydrates (whole grains) and foods with low sugar content typically replace these foods. It is argued that the chemical compounds produced by yeast are toxic to the nervous system. In relation to their ability to remediate the symptoms of autism, yeast-free diets are not substantiated by empirical data. See also empirical evidence. JEANNE HOLVERSTOTT
Z ZERO REJECT Zero Reject refers to one of the founding principles of the Individuals with Disabilities Education Act of 1975 (PL 94-142; formerly Education of All Handicapped Children Act), which states that all children with a disability should be provided full educational opportunities and are eligible for free and appropriate education. Zero Reject ensures that no child with a disability as qualified under the Individuals with Disabilities Education Act should be fully, physically, or functionally excluded from educational opportunities because of disability or a need for special education and related services. In practice, the application of Zero Reject has included the creation of appropriate education programs as well as the transport of students to schools providing appropriate education programs. REFERENCE Education of All Handicapped Children Act of 1975, 20 U.S.C. Sec. 1400(d).
JEANNE HOLVERSTOTT ZIGGURAT MODEL The Ziggurat Model (Aspy & Grossman, 2006) is a system for designing comprehensive interventions for individuals of all ages with autism spectrum disorders (ASD). The model is based on the premise that there are critical factors that must be addressed in all intervention plans for individuals on the spectrum—the five levels of the Ziggurat. An additional premise is that most social, emotional, and other behavioral difficulties experienced by individuals with ASDs stem from the autism itself. In other words, these difficulties are symptoms of the underlying disorder; therefore, in order to be effective, interventions must target underlying factors rather than simply alleviate surface symptoms. The Ziggurat Model incorporates assessment tools used to identify those aspects of autism that manifest as social, emotional, and other behavioral concerns. Underlying elements then become targets for intervention. A third premise of the model is that comprehensive intervention plans include preventative strategies, strategies for teaching new skills, and effective reinforcement—the three elements of a functional behavioral assessment (antecedent, behavior, and consequence).
ZIGGURAT MODEL
INTERVENTION ZIGGURAT The Intervention Ziggurat is the centerpiece of the Ziggurat Model (see Figure 25). It contains five levels in a hierarchal structure. Each level is based on fundamental needs of individuals with ASDs. The levels are interdependent, each contributing to the effectiveness of other levels. The base or foundation of the Ziggurat represents what is, in one sense, the basis of all behavior—biology. Consideration of biological factors is especially important in the case of autism—a disorder with strong genetic and neurological underpinnings. Unmet sensory and biological needs will result in changes in behavior—highlighting the importance of including strategies to address these needs. The second level of the Ziggurat represents another fundamental need—Reinforcement. Reinforcement is defined as ‘‘a situation or event that follows a particular behavior, resulting in an increased likelihood that a behavior will recur in the future’’ (Bregman & Gerdtz, 1997, p. 611). The ultimate goal of comprehensive interventions is to help individuals develop skills that will increase their success. This cannot occur without reinforcement. Individuals on the spectrum require instruction and reinforcement for skills that are generally assumed to have been mastered by same-age peers. This mistaken assumption often results in punishment for failure to display a skill that has actually never been acquired. In order to counter this tendency, the Ziggurat Model includes the reinforcement level to facilitate skill acquisition and maintenance.
Figure 25 The Five Levels of the Intervention Ziggurat
Source: Adapted from The Ziggurat Model: A Framework for Designing Comprehensive Interventions for Individuals with High-Functioning Autism and Asperger’s Syndrome, by R. Aspy & B. G. Grossman. Copyright 2006. Shawnee Mission, KS: Autism Asperger Publishing Company. Reprinted with permission.
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The third level of the Ziggurat, Structure and Visual Supports, is a response to the communication deficits and strong need for routine and order often displayed by individuals with ASDs. Structure is the systematic organization of the environment that increases predictability. The term visual supports refers to a range of techniques that incorporates visual media. Visual supports draw upon a strength of individuals with autism spectrum disorders—the processing of visual information. Structure and visual supports are interrelated concepts. Visual supports are a frequent means of providing increased structure. Further, both increase the ability of individuals on the spectrum to predict and understand the world. Visual reminders (e.g., visual schedules and checklists) or visual instruction techniques (e.g., cartooning and video modeling), called visual supports, are often provided to address these concerns. Visual supports and structure often result in the prevention of problem behaviors, making these strategies critical to an effective intervention plan. Individuals with ASDs are asked to function in a world designed for neurotypicals. Even seemingly simple situations present multilayered demands (e.g., social, communication, cognitive, sensory, social, motor, etc) that can be overwhelming and result in behavioral concerns for those with ASDs. Task difficulty is the focus of the fourth level of the Ziggurat. The goal is to make certain that the balance of supports offered and independence expected are appropriate for the task presented. In general, Task Demand interventions involve identifying prerequisite and component skill deficits and reducing the demands of a task. If skills are lacking or supports are not provided, the demand will be too difficult and expectations cannot be met. The Ziggurat Model incorporates Vygotsky’s concept of the zone of proximal development (ZPD), describing the ideal conditions for skill development, as a guide for determining the level of task demand (1978, as cited in Miller, 1993). Expectations must be reasonable; that is, an individual must be capable of succeeding either independently or with assistance. The first four levels of the Ziggurat set the stage for acquisition of skills. Skills to Teach is the final level of the model. The focus of this level is the teaching of skills across a range of areas—motor, sensory, emotional, social, communication, cognitive, etc. Those with ASDs often require direct instruction in skills and concepts that typically developing individuals acquire effortlessly—this is referred to as the seemingly obvious or ‘‘hidden’’ curriculum (Myles, Trautman, & Schelvan, 2004). As skills increase, less intensive interventions will be required on the lower levels of the Ziggurat because it is the learning of new skills that makes a permanent difference for the person on the spectrum. Table 10 lists examples of strategies on each level of the Intervention Ziggurat. UNDERLYING CHARACTERISTICS The social and behavioral challenges presented by individuals with ASDs most often are manifestations of autism itself. Addressing behaviors without ascertaining and attending to what underlies them is a common intervention mistake. This surface or ‘‘band-aid’’ approach often fails to establish long-term gains because it ignores the true need—underlying hidden deficits. Underlying needs and characteristics related to autism must be addressed (the third premise of the Ziggurat Model). To that end, the Ziggurat Model includes two 421
Table 10. Examples of Interventions on Each Level of the Intervention Ziggurat Level
Examples of Interventions
Sensory Differences and Biological Needs
¥ ¥ ¥ ¥ ¥ ¥ ¥
Sensory diets Pharmacotherapy Breaks Headphones Physical activities Allowing for personal space Relaxation strategies
Reinforcement
¥ ¥ ¥ ¥
Reinforcer menu Token systems First-then charts Self-selection of activity
Structure and Visual Supports
¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥
Cartooning Social Stories (Gray, 1998) Power Cards Social Autopsies Calendars (paper or electronic) Lists T-chart Video Visual map Scheduled work systems Preparation in advance of changes Visual timers Checklists Individualized work stations Picture schedules Portable transition pictures
Task Demands
¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥
Copies of lecture notes Laptop computer for note taking Extra time for written work Personal Digital Assistant (PDA) Organizational skills support Coping cards Circle of Friends Narration High interest activities to encourage social interaction Peer buddies Highlighted text Monitoring teacher Safe place Breaks Preparation in advance of changes Minimizing transitions Scheduled work system PECS Modeling social/communication skills Tactile teaching aides
¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥
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Skills to Teach
¥ ¥ ¥ ¥
Individualized work station Verbal prompts Repeated exposure to activities Adult-directed play routines
¥ ¥ ¥ ¥
Social Stories (Gray, 1998) Adult-directed play routines Modeling social/communication skills Scheduled work system to teach skills for independence Video modeling
¥
assessment tools—the Underlying Characteristics Checklist (UCC) and the ABCIceberg (ABC-I)—designed to identify these underlying factors. The UCC is a descriptive assessment instrument that can be completed by multiple respondents and provides a ‘‘snapshot’’ of how autism is expressed for an individual in the following areas: social, restricted patterns of behavior, interests, and activities, communication, sensory differences, cognitive differences, motor, and emotional vulnerability. The ABC-I incorporates a traditional functional behavioral assessment and helps to illustrate patterns of behavior (i.e., ABCs–antecedent, behavior, and consequence). By including underlying factors, the ABC-I goes beyond the functional behavioral assessment. The user identifies items endorsed on the UCC that are related to the behaviors analyzed in the functional behavior assessment portion of the ABC-I. The process of completing the ABC-I (functional assessment and identification of related underlying factors) highlights the link between the behavior and the underlying autism. The identified antecedent, behavior, and consequences provide three points of intervention. The purpose of behavior interventions is to teach new skills. Antecedent interventions alter the events that ‘‘trigger’’ behavior difficulties and thus are preventative, while consequence interventions alter the events that follow behavior. The Ziggurat Model emphasizes positive consequences in order to reinforce appropriate behaviors and skill development. INTERVENTION DESIGN PROCESS The Ziggurat Model is not a collection of intervention strategies. It is a framework for intervention design. The Ziggurat Worksheet is a tool to assist in this process. Use of the worksheet assures that the three required elements for comprehensive intervention are included. These are: (1) five levels of the Intervention Ziggurat; (2) underlying characteristics, and; (3) three points of intervention A-B-C. The authors of the model emphasize the importance of incorporating evidenced-based strategies. Further, the model provides for ongoing monitoring of progress. The Ziggurat Model presents two paths for intervention: general and specific. General interventions address more global needs based on the UCC, while specific interventions address identified behaviors of concern based on the ABC-I and UCC. Following the assessment process, actual intervention strategies are selected with the aid of the Ziggurat Worksheet in order to create a comprehensive plan. While the Ziggurat Model can be used by an individual, its components lend themselves to collaboration among multiple caregivers. The assessment tools are designed 423
ZONE OF PROXIMAL DEVELOPMENT (ZPD)
to incorporate the perspectives of multiple team members while assuring that they work from the same reference point—the individual’s underlying characteristics of autism. The Ziggurat Worksheet also promotes collaboration by helping parents and professionals to understand their part in the larger intervention picture. Because of this capacity to promote collaboration, the Ziggurat Model is an ideal consultation tool for those serving individuals with ASDs. Through the use of the Ziggurat Model, the whole truly is greater than the sum of its parts. See also genetic factors/heredity. REFERENCES Aspy, R., & Grossman, B. G. (2006). The Ziggurat Model: A framework for designing comprehensive interventions for individuals with high-functioning autism and Asperger syndrome. Shawnee Mission, KS: Autism Asperger Publishing Company. Bregman, J. D., & Gerdtz, J. (1997). Behavioral interventions. In D. J. Cohen & F. R. Volkmar (Eds.), Handbook of autism and pervasive developmental disorders (2nd ed., pp. 606–630). New York: John Wiley and Sons. Gray, C. A. (1998). Social stories and comic strip conversations with students with Asperger syndrome and high functioning autism. In E. Schopler, G. B. Mesibov, & L. J. Kunce (Eds.), Asperger syndrome or high functioning autism (pp. 167–198). New York: Plenum Press. Miller, P. (1993). Theories of developmental psychology (3rd ed.). New York: W. H. Freeman and Company. Myles, B. S., Trautman, M. L., & Schelvan, R. L. (2004). The hidden curriculum: Practical solutions for understanding unstated rules in social situations. Shawnee Mission, KS: Autism Asperger Publishing Company.
RUTH ASPY
AND
BARRY G. GROSSMAN
ZONE OF PROXIMAL DEVELOPMENT (ZPD) A student’s zone of proximal development, or ZPD, is the student’s range of ability with and without assistance from a teacher or capable peer. On one end of the range is the student’s ability level without assistance. On the other end of the range is the student’s ability level with assistance. The ZPD bridges that gap between what is known and what can be known. This theory requires the teacher and student to collaborate so that the student can create his own meaning from the information presented. JAN L. KLEIN
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APPENDIX A: Newsletters Compiled by Lynn Dudek
AANE NEWSLETTER (ASPERGER’S ASSOCIATION OF NEW ENGLAND) AANE members receive a semiannual newsletter that contains valuable articles for those with Asperger syndrome, as well as important news and events. 182 Main Street Watertown, MA 02472 Phone: 617.393.3824 Fax: 617.393.3827 E-mail:
[email protected] Web site: www.aane.org
AHA E-LIST (ASPERGER SYNDROME AND HIGH FUNCTIONING ASSOCIATION E-LIST) Asperger Syndrome and High Functioning Association subscribers receive articles of interest, relevant research abstracts and updates about our group. Web site: www.ahaNY.org
THE ANDI NEWS (AUTISM NETWORK FOR DIETARY INTERVENTION) The ANDI News is a quarterly publication that covers the dietary aspects of autism. The ANDI Web site offers links to resources and frequently asked questions. E-mailed inquiries may take up to several weeks to receive a response. Web site: www.AutismNDI.com
ASCEND NEWS ASCEND Group Inc., the Asperger Syndrome Alliance for Greater Philadelphia, is a nonprofit organization founded in 2001. It was launched by parents of children with Asperger syndrome (AS) as a means to create a community of people who are concerned about the many ways that AS and other autism spectrum disorders affect children and adults and their families in the home, at school, and in every area of their lives. The ASCEND News is a twice-yearly newsletter from ASCEND Group, Inc. ASCEND Group, Inc. P.O. Box 531 Ardmore, PA 19003-0531
APPENDIX A Phone: 610.449.6776 Fax: 610.853.6137 E-mail:
[email protected] Web site: www.ascendgroup.org
THE ASPEN NEWSLETTER ASPEN (Asperger Syndrome Education Network, Inc.) is a source of education, support, and advocacy for families and individuals whose lives are affected by autism spectrum disorders. The ASPEN Newsletter is included as a benefit of membership in ASPEN. The ASPEN Newsletter Asperger Syndrome Education Network, Inc. Aspen Newsletter 9 Aspen Circle Edison, NJ 08820 Phone: 732.321.0880 Web site: www.aspennj.org
ATC NEWSLETTER Periodically published by the Autism Training Center of Marshall University, ATC Newsletter is a pdf format newsletter concerning the activities in and around the Autism Training Center at Marshall. Virginia Autism Training Center at Marshall University College of Education One John Marshall Drive Huntington, WV 25755-2430 Phone: 800.344.5115 Web site: www.marshall.edu/coe/atc/newsletter.html
AUTISM ADVOCATE MAGAZINE The Autism Advocate Magazine, distributed by the Autism Society of America, is a collection of the latest autism news, chapter highlights, first-person accounts of families living with and growing with autism, and tips from parents and professionals. It is distributed to Autism Society of America members five times a year. Autism Society of America 7910 Woodmont Avenue, Suite 300 Bethesda, MD 20814-3067 Phone: 800.3AUTISM Web site: www.autism-society.org
AUTISM ASPERGER PUBLISHING COMPANY (AAPC) NEWSLETTER The AAPC Newsletter is a free online publication that covers a variety of topics including emotions, diet, school, and relationships. The AAPC Newsletter provides a community of support for parents, professionals, and people on the spectrum. Autism Asperger Publishing Company P.O. Box 23173 Shawnee Mission, KS 66283 Phone: 877.277.8254 Fax: 913.681.9473 Web site: www.asperger.net
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AUTISM-ASPERGER’S DIGEST This bimonthly magazine features original articles and materials related to autism spectrum disorders. The magazine is written specifically for parents, teachers, and related service providers. Web site: www.autismdigest.com
AUTISM RESEARCH REVIEW INTERNATIONAL NEWSLETTER Autism Research Review International Newsletter is published quarterly through the Autism Research Institute (ARI). The ARI Web site and newsletter are clearinghouses for biomedical and educational research on autism. Autism Research Institute 4182 Adams Avenue San Diego, CA 92119 Fax: 612.563.6840 Web site: www.autism.com/ari
AUTISM SPECTRUM QUARTERLY Autism Spectrum Quarterly (ASQ) provides information for individuals on the autism spectrum as well as their families. Articles are written by individuals on the autism spectrum as well as leading professionals in the field. Autism Spectrum Quarterly c/o Starfish Specialty Press LLC P.O. Box 799 Higganum, CT 06441-0799 Phone: 877.STARFISH, ext. 3 Fax: 860.345.4471 Web site: www.ASQuarterly.com
DAN! PROTOCOL (DEFEAT AUTISM NOW!) The DAN! Protocol outlines guidelines for biological treatments of autism. It is published through the Autism Research Institute. Web site: www.autism.com/ari/dan/dan.htm
FASTIMES (FLORIDA ASPERGER SYNDROME TIMES) FASTimes is published by the University of Miami Center for Autism & Related Disabilities. The newsletter contains tips, articles, resources, and practical intervention strategies for parents and educators of children with Asperger syndrome. FASTimes 5665 Ponce de Leon Boulevard Coral Gables, FL 33124 Phone: 305.284.6556 Web site: www.umcard.org
F.E.A.T. DAILY AUTISM NEWSLETTER (FAMILIES FOR EARLY AUTISM TREATMENT) This newsletter is sent daily via e-mail. It includes updates on research, interventions, publicity, and other news in the autism world. Web site: www.feat.org
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THE MAAP The MAAP is the quarterly publication for the families of MAAP Services (More Able Autistic Persons). Each issue includes: a letter from the editor, letters from parents and individuals with ASD, and an FYI section. MAAP Services, Inc. P.O. Box 524 Crown Point, IN 46307 Phone: 219.662.1311 Fax: 219.662.0638 Web site: www.maapservices.org
THE NEW ENGLAND CENTER FOR CHILDREN RESEARCH NEWSLETTER The New England Center for Children (NECC) publishes the Research Newsletter, through which we hope to let families, practitioners, researchers, and others in the NECC community know about some of the research being conducted here. The New England Center for Children 33 Turnpike Road Southborough, MA 01772-2108 Phone: 508.481.1015 Fax: 508.485.3421 Web site: www.necc.org
THE OARACLE The OARacle is a monthly e-newsletter from The Organization for Autism Research (OAR). Topics include articles on strategies and interventions, empirical research, personal perspectives, and updates on OAR’s yearly conference. Organization for Autism Research 2000 North 14th Street, Suite 480 Arlington, VA 22201 Phone: 703.243.9710 Web site: www.researchautism.org
THE OPEN DOOR NEWSLETTER The Open Door is the official newsletter of The New England Center for Children. Published twice a year, The Open Door provides profiles of students, parents, staff, donors, and board members, along with news and announcements from all around NECC. The New England Center for Children 33 Turnpike Road Southborough, MA 01772-2108 Phone: 508.481.1015 Fax: 508.485.3421 Web site: www.necc.org
USAA NEWSLETTER (U.S. AUTISM AND ASPERGER ASSOCIATION, INC. NEWSLETTER) The USAA Newsletter is an e-newsletter that addresses a range of topics on autism and Asperger syndrome. Web site: www.usautism.org
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APPENDIX B: Journals Compiled by Lynn Dudek and Terri Cooper Swanson AMERICAN JOURNAL OF HUMAN GENETICS The American Journal of Human Genetics explores topics such as behavioral genetics, biochemical genetics, clinical genetics, cytogenetics, dysmorphology, gene therapy, genetic counseling, genetic epidemiology, genomics, immunogenetics, molecular genetics, neurogenetics, and population genetics. American Journal of Human Genetics 1427 East 60th Street Chicago, IL 60637 Phone: 877.705.1878 Fax: 877.705.1879 E-mail:
[email protected] Web site: www.journals.uchicago.edu/AJHG
AMERICAN JOURNAL OF OCCUPATIONAL THERAPY The American Journal of Occupational Therapy is a peer-reviewed journal related to research and professional development in occupational therapy. AOTA Subscriptions—AJOT P.O. Box 31220 Bethesda, MD 20824-1220 Phone: 301.652.2682, ext. 2769 Web site: www.aota.org
AMERICAN JOURNAL OF SPEECH LANGUAGE PATHOLOGY The American Journal of Speech Language Pathology pertains to all aspects of clinical practice in speech-language pathology. Articles address screening, assessment, and treatment techniques, and professional issues. ASHA 10801 Rockville Pike Rockville, MD 20852 Phone: 888.498.6699 Fax: 301.897.7355 E-mail:
[email protected] Web site: www.asha.org
APPENDIX B
ARCHIVES OF GENERAL PSYCHIATRY The Archives of General Psychiatry publishes original, state-of-the-art studies and commentaries of general interest to clinicians, scholars, and research scientists in psychiatry, mental health, behavioral science, and allied fields. Subscriber Services Center American Medical Association P.O. Box 10946 Chicago, IL 60610-0946 Phone: 800.262.2350 E-mail:
[email protected] Web site: http://archpsych.ama.assn.org
ASSESSMENT FOR EFFECTIVE INTERVENTION (FORMERLY DIAGNOSTIQUE) Assessment for Effective Intervention is the official diagnostic journal for the Council for Exceptional Children. This peer-reviewed journal publishes empirical research that is applicable to diagnosticians, special educators, psychologists, and others related to psychoeducational assessment. The Council for Exceptional Children 1110 North Glebe Road, Suite 300 Department K03082 Arlington, VA 22201-5704 Phone: 888.232.7733 Fax: 703.264.9494 Web site: www.ideapractices.org/bk/catalog2/divjourn.html
AUTISM: THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE Autism is an international journal for research of direct practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The National Autistic Society 393 City Road, London, EC1V 1NG, United Kingdom Phone: +44.0.20.7833.2299 Fax: +44.0.20.7833.9666 E-mail:
[email protected] Web site: www.sagepub.co.uk
BRAIN (THE JOURNAL OF NEUROLOGY) Brain provides researchers and clinicians with original contributions in the field of neurology. Leading studies in neurological science are balanced with practical clinical articles. Brain Journals Subscription Department Great Clarendon Street Oxford OX2 6DP, United Kingdom Phone: +44.0.1865.353907 Fax: +44.0.1865.353485 E-mail:
[email protected] Web site: http://brain.oxfordjournals.org
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BRITISH JOURNAL OF DEVELOPMENTAL PSYCHOLOGY British Journal of Developmental Psychology publishes full-length empirical, conceptual, review, and discussion papers, as well as brief reports on all aspects of developmental psychology, including: motor, perceptual, cognitive, social, and emotional development in infancy; social, emotional, personality, cognitive, and sociocognitive development in childhood, adolescence, and adulthood; atypical development, including developmental disorders and learning difficulties/disabilities; factors that impact upon psychological development; theories of psychological development. The British Psychological Society St Andrews House 48 Princess Road East Leicester, LE1 7DR, United Kingdom Phone: +44.0.116.254.9568 Fax: +44.0.116.247.0787 E-mail:
[email protected] Web site: www.bps.org.uk
CAREER DEVELOPMENT OF EXCEPTIONAL INDIVIDUALS Career Development of Exceptional Individuals is the official journal for the Council for Exceptional Children Division on Career Development and Transition. This peer-reviewed journal is published twice a year on issues related to transition and career development. The Council for Exceptional Children 1110 North Glebe Road, Suite 300 Department K03082 Arlington, VA 22201-5704 Phone: 888.232.7733 Fax: 703.264.9494 Web site: www.dcdt.org and www.ideapractices.org/bk/catalog2/divjourn.html
EDUCATION AND TRAINING IN DEVELOPMENTAL DISABILITIES Education and Training in Developmental Disabilities is a peer-reviewed journal published by the Council of Exceptional Children Division on Developmental Disabilities. The journal is published quarterly. The Council for Exceptional Children 1110 North Glebe Road, Suite 300 Department K03082 Arlington, VA 22201-5704 Phone: 888.232.7733 Fax: 703.264.9494 Web site: www.ideapractices.org/bk/catalog2/divjourn.html
FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES Focus on Autism and Other Developmental Disabilities is published by Council for Exceptional Children Division on Developmental Disabilities. Focus covers a variety of issues related to autism and developmental disabilities in education, psychology, therapies, and other related areas. Phone: 800.897.3203 Fax: 800.397.7633 Web site: www.proedinc.com
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INTERVENTION IN SCHOOL AND CLINIC Intervention in School and Clinic provides user-friendly information for teachers and related practitioners. Topics include information related to children with learning disabilities and behavior disorders. Phone: 800.897.3203 Fax: 800.397.7633 Web site: www.proedinc.com
JOURNAL OF APPLIED BEHAVIORAL ANALYSIS Journal of Applied Behavioral Analysis is a peer-reviewed journal that publishes empirical research related to the field of applied behavioral analysis. Kathy Hill, Business Manager Department of Applied Behavioral Sciences 1000 Sunnyside Avenue Lawrence, KS 66045-2133 Phone: 785.841.4425 Fax: 785.841.0846 E-mail:
[email protected] Web site: http://seab.envmed.rochester.edu/jaba
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS Journal of Autism and Developmental Disorders is a peer-reviewed journal that specializes in severe childhood psychopathologies, including autism and childhood schizophrenia. The journal features experimental research on biochemical, neurological, and genetic aspects of particular disorders, case studies, and advances in the diagnosis and classification of disorders. Springer 233 Spring Street New York, NY 10013 Phone: 800.SPRINGER E-mail:
[email protected] Web site: www.springer.com
JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY AND ALLIED DISCIPLINES The Journal of Child Psychology and Psychiatry is an international journal covering both child and adolescent psychology and psychiatry. Articles published include experimental and developmental studies. Blackwell Publishing Inc. Commerce Place 350 Main Street Malden, MA 02148 Phone: 781.388.8200 Fax: 781.388.8210 Web site: www.blackwellprofessional.com
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JOURNAL OF NEUROPSYCHIATRY & CLINICAL NEUROSCIENCES The Journal of Neuropsychiatry and Clinical Neurosciences presents original research and clinical reports related to the assessment and treatment of neuropsychiatric disorders. Journal of Neuropsychiatry and Clinical Neurosciences 1000 Wilson Boulevard, Suite 1825 Arlington, VA 22209-3901 Phone: 800.368.5777 E-mail:
[email protected] Web site: http://neuro.psychiatryonline.org
JOURNAL OF POSITIVE BEHAVIOR INTERVENTIONS Journal of Positive Behavior Interventions is a peer-reviewed journal that publishes information on empirical research and programs and is a forum on controversial issues and published materials. Phone: 800.897.3203 Fax: 800.397.7633 Web site: www.proedinc.com
JOURNAL OF SPEECH HEARING LANGUAGE RESEARCH The Journal of Speech, Language, and Hearing Research pertains broadly to studies of the processes and disorders of hearing, language, and speech and to the diagnosis and treatment of such disorders. ASHA 10801 Rockville Pike Rockville, MD 20852 Phone: 888.498.6699 Fax: 301. 897.7355 E-mail:
[email protected] Web site: www.asha.org
JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION The Journal of the American Medical Association is an international peer-reviewed general medical journal published 48 times per year. JAMA is the most widely circulated medical journal in the world. Subscriber Services Center American Medical Association P.O. Box 10946 Chicago, IL 60610-0946 Phone: 800.262.2350 E-mail:
[email protected] Web site: http://jama.ama-assn.org
JOURNAL OF THE INTERNATIONAL NEUROPSYCHOLOGICAL SOCIETY Journal of the International Neuropsychological Society publishes peer-reviewed articles covering all areas of neuropsychology with either an experimental or clinical focus.
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APPENDIX B Cambridge University Press 100 Brook Hill Drive West Nyack, NY 10994-2133 Phone: 800.872.7423 Fax: 845.353.4141 E-mail:
[email protected] Web site: www.cambridge.org/journals
NEUROLOGY Neurology is directed to physicians concerned with diseases and conditions of the nervous system. The journal’s purpose is to advance the field by presenting new basic and clinical research with emphasis on knowledge that will influence the way neurology is practiced. Lippincott Williams & Wilkins Customer Service Department 16522 Hunters Green Parkway Hagerstown, MD 21740 Phone: 866.489.0443 Fax: 301.223.2398 E-mail:
[email protected] Web site: www.neurology.org
NEUROSCIENCE & BIOBEHAVIORAL REVIEWS This journal publishes original and significant review articles dealing with all aspects of neuroscience, where the relationship to the study of psychological processes and behavior is clearly established. Customer Service Department 6277 Sea Harbor Drive Orlando, FL 32887-4800 Phone: 877.839.7126 Fax: 407.363.1354 E-mail:
[email protected] Web site: www.elsevier.com
NEW ENGLAND JOURNAL OF MEDICINE The New England Journal of Medicine is a weekly general medical journal that publishes new medical research findings, review articles, and editorial opinions on a wide variety of topics of importance to biomedical science and clinical practice. Customer Services 860 Winter Street Waltham, MA 02451-1413 Phone: 800.843.6356 Fax: 781.893.0413 E-mail:
[email protected] Web site: www.nejm.org
PEDIATRICS Pediatrics is a peer-reviewed journal of the American Academy of Pediatrics. The journal’s vision since 1948 continues to be ‘‘intended to encompass the needs of the whole child in his physiologic, mental, emotional, and social structure.’’
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APPENDIX B American Academy of Pediatrics 141 Northwest Point Boulevard Elk Grove Village, IL 60007-1098 Phone: 866.843.2271 Fax: 847.228.1281 E-mail:
[email protected] Web site: http://pediatrics.aappublications.org
PSYCHOLOGICAL MEDICINE Psychological Medicine is an international journal in the fields of psychiatry, related aspects of psychology, and basic sciences. Each issue features original articles reporting key research being undertaken worldwide. Cambridge University Press 100 Brook Hill Drive West Nyack, NY 10994-2133 Phone: 800.872.7423 Fax: 845.353.4141 E-mail:
[email protected] Web site: www.cambridge.org/journals
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APPENDIX C: Organizations
AMERICAN ACADEMY OF CHILD AND ADOLESCENT PSYCHIATRY The American Academy of Child and Adolescent Psychiatry is a national professional medical association dedicated to treating and improving the quality of life for children, adolescents, and families affected by mental, behavioral, or developmental disorders. The AACAP is composed of over 7,400 child and adolescent psychiatrists and other physicians. These physicians actively research, evaluate, diagnose, and treat individuals with such psychiatric disorders. The American Academy of Child and Adolescent Psychiatry 3615 Wisconsin Avenue, NW Washington, DC 20016-3007 Phone: 202.966.7300 Fax: 202.966.2891 Web site: www.aacp.org
AMY BIXLER COFFIN AMERICAN HYPERLEXIA ASSOCIATION American Hyperlexia Association (AHA) is a nonprofit organization represented by children with hyperlexia, parents, educators, and professionals devoted to identifying and promoting effective interventions for hyperlexia. Members of AHA receive quarterly newsletters, notice of conferences, and a directory of membership to encourage networking. 195 W. Spangler Road, Suite B Elmhurst, IL 60126 Phone: 630.415.2212 Fax: 630.530.5909 Web site: www.hyperlexia.org
KATHERINE E. COOK AMERICAN MEDICAL ASSOCIATION The American Medical Association (AMA) is the professional association that organizes and serves the needs of medical doctors, defines a code of ethics, and determines the standards of practice. This organization creates policy on the management and treatment of health care issues, ethics, and internal governance. Detailed information is available on the AMA’s Web site. 515 N. State Street Chicago, IL 60610
APPENDIX C Phone: 800.621.8335 Web site: www.ama-assn.org
LYNN DUDEK AMERICAN MUSIC THERAPY ASSOCIATION The American Music Therapy Association (AMTA) is the professional association that organizes and serves the needs of Certified Music Therapists. The organization was founded in 1998, and it sets the educational and clinical standards necessary to be certified as a music therapist. American Music Therapy Association, Inc. 8455 Colesville Road, Suite 1000 Silver Spring, MD 20910 Phone: 301.589.3300 Fax: 301.589.5175 Web site: www.musictherapy.org
LYNN DUDEK AMERICAN OCCUPATIONAL THERAPY ASSOCIATION The American Occupational Therapy Association (AOTA) is the professional association that organizes and attends to the needs of occupational therapists, occupational therapy assistants, and students studying to become occupational therapists. The AOTA, through the Accreditation Council for Occupational Therapy Education (ACOTE), has developed standards for the profession of occupational therapy. Included in the standards of AOTA are accountability, respect, and service excellence. 4720 Montgomery Lane P.O. Box 31220 Bethesda, MD 20824-1220 Phone: 301.652.2682 Fax: 301.652.7711 Web site: www.aota.org
LYNN DUDEK AMERICAN PHYSICAL THERAPY ASSOCIATION The American Physical Therapy Association (APTA) is the professional association that organizes and serves the needs of physical therapists, physical therapy assistants, and students studying to become physical therapists. APTA defines and administers the rules and terms of membership for its members, as well as serves as a resource for continuing education, information, and research. American Physical Therapy Association 1111 N. Fairfax Street Alexandria, VA 22314-1488 Phone: 703.684.APTA (2782) Fax: 703.684.7343 Web site: www.apta.org
LYNN DUDEK AMERICAN PSYCHIATRIC ASSOCIATION The American Psychiatric Association includes over 35,000 U.S. and international member physicians working together to make certain that all persons with mental disorders, including mental
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AMY BIXLER COFFIN AMERICAN PSYCHOLOGICAL ASSOCIATION The American Psychological Association (APA) is the largest association of psychologists. The APA seeks to advance the profession of psychology through education, establishment, and maintenance of high standards, research, and encouragement of psychology across all its branches. American Psychological Association 750 First Street, NE Washington, DC 20002-4242 Phone: 800.374.2721 Web site: www.apa.org
MEGAN MOORE DUNCAN AMERICAN SPEECH-LANGUAGE-HEARING ASSOCIATION The American Speech-Language Hearing Association (ASHA) is the professional association that organizes and serves the needs of speech language pathologists and audiologists, as well as those students studying to become speech pathologists and audiologists. ASHA defines and administers the rules and requirements for certification for its members, as well as serves as a resource for continuing education, clinical information, and research. 10801 Rockville Pike Rockville, MD 20852 Phone: 800.638.8255 Fax: 240.333.4705 Web site: www.asha.org
LYNN DUDEK THE ARC OF THE UNITED STATES The Arc of the United States is a national organization represented by people with mental retardation and their families. The Arc advocates at the local, state, and federal levels and is dedicated to advancing supports and services, and providing resources, educational assistance, and technical support. The Arc of the United States 1010 Wayne Avenue, Suite 650 Silver Spring, MD 20910 Phone: 301.565.3842 Fax: 301.565.5342 E-mail:
[email protected] Web site: www.thearc.org
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ASSOCIATION FOR BEHAVIOR ANALYSIS The Association for Behavior Analysis is a nonprofit professional membership organization with the goal of developing, improving, and supporting the growth and vivacity of behavior analysis through research, education, and practice. The organization is dedicated to promoting the experimental, theoretical, and applied analysis of behavior. Memberships include both individual and organization memberships. 1219 South Park Street Kalamazoo MI 49001 Phone: 269.492.9310 Fax: 269.492.9316 Web site: www.abainternational.org
AMY BIXLER COFFIN ASSOCIATION FOR BEHAVIORAL AND COGNITIVE THERAPIES The Association for Behavioral and Cognitive Therapies (formerly known as Association for Advancement of Behavior Therapy) is a nonprofit professional, interdisciplinary organization consisting of over 4,500 mental health professionals and students who use and/or are interested in empirically based behavior therapy or cognitive behavior therapy. Members of the organization yearn to understand human behavior, develop interventions to improve the human condition, and promote the appropriate utilization of these interventions. Association for Behavioral and Cognitive Therapies 305 7th Avenue, 16th Fl. New York, NY 10001 Phone: 212.647.1890 Fax: 212.647.1865 Web site: www.aabt.org
AMY BIXLER COFFIN ASSOCIATION FOR SCIENCE IN AUTISM TREATMENT The Association for Science in Autism Treatment (ASAT) strives to distribute accurate and scientifically based information about autism. ASAT distributes a free newsletter, Science in Autism Treatment, and hosts Science in Autism Treatment conferences geared towards improving access to effective, science-based interventions for all individuals with autism. Association for Science in Autism Treatment 389 Main Street, Suite 202 Malden, MA 02148 Phone: 781.397.8943 Fax: 781.397.8887 Web site: www.asatonline.org
KATHERINE E. COOK ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITY Association of University Centers on Disability (AUCD; formerly American Association of University Affiliated Programs) is a nonprofit organization striving to advance the lives of individuals with developmental disabilities and their families by promoting and supporting the national network of university centers on disabilities, as they conduct research, advance policy, and develop educational interventions. Association of University Centers on Disabilities 1010 Wayne Avenue, Suite 920
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APPENDIX C Silver Spring, MD 20910 Phone: 301.588.8252 Fax: 301.588.2842 Web site: www.aucd.org
KATHERINE E. COOK AUTISM INTERNATIONAL NETWORK Autism Network International (ANI) is an organization run by individuals with autism that provides a medium for autistic persons to share information and problem-solve. ANI provides an advocacy voice for individuals with autism seeking equal opportunities and rights. Additionally, ANI provides social opportunities for individuals with autism through Autreat, a 3-day retreat and conference specifically designed for individuals with autism. Autism Network International P.O. Box 35448 Syracuse, NY 13235-5448 Web site: www.ani.autistics.org
KATHERINE E. COOK AUTISM RESEARCH INSTITUTE Autism Research Institute (ARI) is a nonprofit organization, committed to conducting research and providing parents and professionals with identified results related to the cause, prevention, diagnosis, and treatment of autism spectrum disorders. ARI publishes a quarterly newsletter, The Autism Research Review International, which provides up-to-date information and is available by subscription. 4182 Adams Avenue San Diego, CA 92116 Fax: 619.563.6840 Web site: www.AutismResearchInstitute.com
KATHERINE E. COOK AUTISM SOCIETY OF AMERICA The Autism Society of America (ASA) advocates and supports lifelong accessibility opportunities for individuals with autism spectrum disorders. ASA is one of the leading advocacy groups for individuals with autism spectrum disorders at the local, state, and federal level. ASA provides valuable resources to parents, educators, and professionals, including an on-line resource directory, free e-newsletter, current news and media events, and an annual conference. Most states within the United States have local ASA chapters. In addition, ASA founded the ASA foundation to support quality research in the area of autism spectrum disorders. Autism Society of America 7910 Woodmont Avenue, Suite 300 Bethesda, MD 20814-3067 Phone: 800.328.8476 Web site: www.autism-society.org
KATHERINE E. COOK AUTISM SPEAKS Autism Speaks is dedicated to conducting research on the causes, prevention, treatments, and the cure for autism. Bob and Suzanne Wright, whose grandson is diagnosed with autism, founded Autism Speaks in 2005 in an effort to find a cure. Their mission is to raise awareness
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APPENDIX C and the funds to quicken the pace of research. Most recently Autism Speaks joined forces with the National Alliance for Autism Research. 2 Park Avenue 11th Floor New York, NY 10016 Phone: 212.252.8584 Fax: 212.252.8676 Web site: www.autismspeaks.org
TERRI COOPER SWANSON CENTER FOR THE STUDY OF AUTISM Center for the Study of Autism (CSA) provides up-to-date information regarding autism spectrum disorders to parents, educators, and professionals. Additionally, CSA in collaboration with the Autism Research Institute conducts on-going research looking at the efficacy of various therapeutic interventions utilized with individuals with autism spectrum disorders. Center for the Study of Autism P.O. Box 4538 Salem, OR 97302 Web site: www.autism.org
KATHERINE E. COOK CENTERS FOR DISEASE CONTROL AND PREVENTION Founded in 1946, the Centers for Disease Control and Prevention (CDC) is one of the 13 major operating components of the Department of Health and Human Services, which is the principal agency in the United States government for protecting the health and safety of all Americans and for providing essential human services, especially for those people who are least able to help themselves. 1600 Clifton Road Atlanta, GA 30333 Phone: 800.311.3435 Web site: www.cdc.gov
PATRICIA R. SCHISSEL CHILDREN’S DEFENSE FUND Children’s Defense Fund (CDF) is a private, nonprofit organization that advocates, lobbies, and educates in the need for preventative care for America’s poor, minority, and disabled children. Programs include Head Start and Healthy Start. CDF provides a calendar of upcoming events impacting America’s children. 25 E Street, NW Washington, D.C. 20001 Phone: 202.628.8787 Web site: www.childrensdefense.org
KATHERINE E. COOK CLOSING THE GAP Founded in 1983 by Budd and Dolores Hagen, parents of a child who is deaf, Closing the Gap, Inc. is an organization that focuses on computer technology for individuals with special needs. The organization produces a bimonthly newspaper highlighting hardware and software
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APPENDIX C products appropriate for people with special needs. Closing the Gap, Inc. also hosts an annual international conference, which is held each fall in Minneapolis, Minnesota. The conference allows participants to explore the many ways that technology can be used to improve the lives of persons with disabilities. 526 Main Street P.O. Box 68 Henderson, MN 56044 Phone: 507.248.3294 Fax: 507.248.3810 Web site: www.closingthegap.com
AMY BIXLER COFFIN COLLABORATIVE PROGRAMS FOR EXCELLENCE IN AUTISM In 1997, the National Institute for Child Health and Development (NICHD), in collaboration with the National Institute on Deafness and Other Communication Disorders (NIDCD), started a 5-year, $45 million international Network on the Neurobiology and Genetics of Autism. The Network included 10 Collaborative Programs of Excellence in Autism (CPEAs) designed to conduct research about the possible causes of autism, targeting genetic, immunological, and environmental factors. In 2002, the NICHD and NIDCD renewed funding for the CPEA Network, agreeing to provide $60 million over a period of 5 years. The CPEAs link 129 scientists from 23 universities in the United States, Canada, Britain, and five other countries, and more than 2,000 families of people with autism. As a result of the CPEAs, researchers now have data on the genetics and outward characteristics of the largest group of well-diagnosed persons with autism in the world. 6100 Executive Boulevard, Room 4B09F, MSC 7510 Bethesda, MD 20892-7101 Phone: 800.370.2943 Fax: 301.496.3791 Web site: www.nichd.nih.gov/autism/research/cpea.cfm
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COUNCIL FOR EXCEPTIONAL CHILDREN The Council for Exceptional Children (CEC) is a professional organization that focuses on improving the education of children who are gifted or have disabilities. The CEC advocates for these children, provides professional development, and publishes journals and newsletters. 1110 North Glebe Road Suite 300 Arlington, VA 22201 Phone: 888.915.5000 Fax: 703.264.9494 Web site: www.cec.sped.org
LYNN DUDEK
CURE AUTISM NOW Cure Autism Now (CAN) is an organization of parents, medical professionals and researchers devoted to lobbying and raising money for autism research, education, and support. The
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APPENDIX C principle research goals of CAN are to fund programs seeking to identify the cause(s) of autism so that prevention and treatment options may be implemented. 5455 Wilshire Boulevard, Suite 715 Los Angeles, CA 90036-4234 Phone: 888.8.AUTISM Fax: 323.549.0500 Web site: www.cureautismnow.org
KATHERINE E. COOK
FAMILY FOR EARLY TREATMENT OF AUTISM Family for Early Autism Treatment (FEAT) is a nonprofit organization composed of parents and professionals who are devoted to providing education, advocacy, and support regarding autism spectrum disorders, pervasive developmental disorder, and Asperger syndrome to families, educators, and professionals. FEAT organizations are located throughout the United States. Families for Early Autism Treatment P.O. Box 255722 Sacramento, CA 95865-5722 Web site: www.feat.org
KATHERINE E. COOK INSTITUTE OF EDUCATION SERVICES The Institute of Education Services (IES) is part of the U.S. Department of Education. IES is responsible for finding evidence to support the foundations of education policy and practice. U.S. Department of Education 400 Maryland Avenue, SW Washington, DC 20202 Phone: 200.872.5327 Fax: 202.401.0689 Web site: www.ed.gov/ies
TERRI COOPER SWANSON INTERAGENCY AUTISM COORDINATING COMMITTEE The Interagency Autism Coordinating Committee (IACC) was mandated by The Children’s Health Act of 2000 to facilitate the exchange of information on autism research and activities. The IACC meets biannually at the National Institute for Health (NIH). The committee is chaired by the director of the National Institute of Mental Health (NIMH) and is composed of directors or lead administrators from all the agencies of the National Institute of Health (NIH) plus public members from agencies and universities (i.e., Autism Society of America, Cure Autism Now, a university professor whose child has autism). National Institute of Mental Health Public Information and Communications Branch 6001 Executive Boulevard, Room 8184, MSC 9663 Bethesda, MD 20892-9663 Phone: 866.615.6464 Fax: 301.443.4279 Web site: www.nimh.nih.gov/autismiacc/index.cfm
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INTERNATIONAL RETT SYNDROME ASSOCIATION The International Rett Syndrome Association (IRSA) provides individuals with accurate information and resources on Rett syndrome including books, materials, conferences, a web page, and a quarterly newsletter. IRSA has funded over $2.33 million dollars for the sole purpose of research related to Rett syndrome. In addition, IRSA provides a toll-free help line, RettNet, which provides personal answers to individual questions. 9121 Piscataway Road Clinton, MD 20735 Phone: 800.818.RETT Fax: 301.856.3336 Web site: www.rettsyndrome.org
KATHERINE E. COOK LEARNING DISABILITY ASSOCIATION OF AMERICA The Learning Disability Association of America (LDA) provides support to individuals with learning disabilities while providing timely, accurate, and objective information, solutions, and resources for specific learning disabilities, including a calendar of events and an online bookstore. In addition, LDA specifically provides information regarding learning disabilities under the categories of parents, teachers, and professionals and for adults. 4156 Library Road Pittsburgh, PA 15234-1349 Phone: 412.341.1515 Fax: 412.344.0224 Web site: www.ldaamerica.org
KATHERINE E. COOK LOVAAS INSTITUTE FOR EARLY INTERVENTION The Lovaas Institute for Early Intervention (LIFE) is a nationwide research-based educational program that provides an individualized comprehensive curriculum aimed at enhancing language, communication, social, preacademic, and independent living skills of young children with autism spectrum disorders. This program is designed to work with all students regardless of their functioning level. 11500 West Olympic Boulevard, Suite 460 Los Angeles, CA 90064 Phone: 310.914.5433 Fax: 310.914.5463 Web site: www.lovaas.com
KATHERINE E. COOK MAAP SERVICES FOR AUTISM AND ASPERGER SYNDROME MAAP (More Abled Autistic Persons) Services for Autism and Asperger Syndrome is a nonprofit organization that provides information and advice to families of individuals with autism spectrum disorders via printed materials, phone calls, e-mails, and conferences. Additionally, MAAP distributes a quarterly newsletter that provides parents and professionals opportunities for timely and accurate information as well as a means for networking. P.O. Box 524 Crown Point, IN 46307
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APPENDIX C Phone: 219.662.1311 Fax: 219.662.0638 Web site: www.maapservices.org
KATHERINE E. COOK NATIONAL ALLIANCE FOR AUTISM RESEARCH National Alliance for Autism Research (NAAR) is a nonprofit organization dedicated to finding the causes, prevention, and effective treatments for autism spectrum disorders. NAAR promotes and funds research and science-based approaches through grants, pilot studies, fellowships, and collaborative research efforts with the objective being finding a cure for autism spectrum disorders. 99 Wall Street, Research Park Princeton, NJ 08540 Phone: 888.777.NAAR Fax: 609.430.9163 Web site: www.naar.org
KATHERINE E. COOK
NATIONAL HUMAN GENOME RESEARCH INSTITUTE In 1989, Congress established an organization called The National Human Genome Research Institute (NCHGR), which was the United States’ contribution to the International Human Genome Project (HGP). In 1990 the HGP began to map the human genome. The Human Genome Project was the international, collaborative research program whose goal was the complete mapping and understanding of all the genes of human beings; this map is called the ‘‘genome.’’ In 1993, NCHGR expanded its role on the National Institute of Health (NIH) campus by establishing the Division of Intramural Research (DIR) to apply genome technologies to the study of specific diseases. In 1996, the Center for Inherited Disease Research (CIDR) was also established (cofunded by eight NIH institutes and centers) to study the genetic components of complex disorders. In 1997, the United States Department of Health and Human Services (DHHS) renamed this organization, NCHGR, as the National Human Genome Research Institute (NHGRI), officially elevating it to the status of a research institute—1 of 27 institutes and centers that make up the NIH. Now, with the human genome sequence complete since April 2003, scientists around the world have access to a database that greatly facilitates and accelerates the pace of biomedical research. Communication and Public Liaison Branch National Human Genome Research Institute National Institutes of Health Building 31, Room 4B09 31 Center Drive, MSC 2152 9000 Rockville Pike Bethesda, MD 20892-2152 Phone: 301.402.0911 Fax: 301.402.2218 Web site: www.genome.gov
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NATIONAL INFORMATION CENTER FOR CHILDREN AND YOUTH WITH DISABILITIES The National Dissemination Center for Children with Disabilities (NICHCY) is a national information center that provides individuals with information, resources, and issues related to specific disabilities. Specific information provided by NICHCY includes disabilities in infants, toddlers, children, and youth, IDEA, No Child Left Behind, resources for every state, disability and professional organizations, and parent materials. P.O. Box 1492 Washington, DC 20013 Phone: 800.695.0285 Fax: 202.884.8441 Web site: www.nichcy.org
KATHERINE E. COOK NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT NICHD research on fertility, pregnancy, growth, development, and medical rehabilitation strives to ensure that every child is born healthy and wanted and grows up free from disease and disability. Established in 1962, the NICHD, part of the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services, is one of several institutes doing research into various aspects of autism, including its causes, prevalence, and treatments. P.O. Box 3006 Rockville, MD 20847 Phone: 800.370.2943 Fax: 301.984.1473 Web site: www.nichd.nih.gov/autism
PATRICIA R. SCHISSEL NATIONAL ORGANIZATION FOR RARE DISORDERS The National Organization for Rare Disorders (NORD) is a consortium of health organizations (not a government agency) responsible for education, promotion of research, and information regarding rare diseases. NORD is dedicated to the identification, treatment, and cure of those rare disorders. The definition of a rare disorder is one that affects fewer than 200,000 individuals in the Unites States (e.g., Huntington’s disease, neurofibromatosis, and cri du chat syndrome). 55 Kenosia Avenue P.O. Box 1968 Danbury, CT 06813-1968 Phone: 203.744.0100 Fax: 203.798.2291 Web site: www.rarediseases.org
LYNN DUDEK OFFICE OF SPECIAL EDUCATION AND REHABILITATION SERVICES The Office of Special Education and Rehabilitation Services (OSERS) is the agency of the U.S. federal government responsible for the administration of the No Child Left Behind Act (NCLB) and supports local districts in the outcomes for children with disabilities. OSERS
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APPENDIX C provides support in three main areas: special education, vocational rehabilitation, and research. The OSERS Web site contains links to resources, research, and other government programs. U.S. Department of Education 400 Maryland Avenue, SW Washington, DC 20202 Phone: 800.872.5327 Fax: 202.401.0689 Web site: www.ed.gov/about/offices/list/osers/index.html
TERRI COOPER SWANSON
OFFICE OF SPECIAL EDUCATION PROGRAMS The Office of Special Education Programs (OSEP) is the agency of the U.S. federal government responsible for the administration of the Individuals with Disabilities Act (IDEA) and supports local districts in the improvement of results for children with disabilities. The OSEP Web site contains links to state organizations as well. U.S. Department of Education 400 Maryland Avenue, SW Washington, DC 20202 Phone: 800.USA.LEARN Fax: 202.401.0689 Web site: www.ed.gov/about/offices/list/osers/osep/index.html?src=mr
MEGAN MOORE DUNCAN
ORGANIZATION FOR AUTISM RESEARCH Organization for Autism Research (OAR) is a parent-led organization that focuses on applied research. OAR’s mission is to apply research to the challenges of autism spectrum disorders by funding applied pilot studies, commissioning directed studies, and communicating autism research in a family and community friendly manner. 2111 Wilson Boulevard, Suite 600 Arlington, VA 22201 Phone: 703.351.5031 Web site: www.researchautism.org
KATHERINE E. COOK
PACER CENTER, INC. PACER Center, Inc. provides support and resources for individuals with disabilities and their families. PACER is based on the model of parents helping parents and is able to provide oneon-one help, a newsletter, a catalog of publications, and PACER programs that address specific needs and resources disabilities. 8161 Normandale Boulevard Minneapolis, MN 55437 Phone: 952.838.9000 Fax: 952.838.0199 Web site: www.pacer.org
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STUDIES TO ADVANCE AUTISM RESEARCH AND TREATMENT NETWORK Congress passed the Children’s Health Act of 2000, legislation that mandated many activities, among them the establishment of a new autism research network. In response, the five Institutes of the National Institute of Health Autism Coordinating Committee (NIMH, NICHD, NINDS, NIDCD, & NIEHS) have implemented the Studies to Advance Autism Research and Treatment (STAART) network program. The STAART Network includes eight centers located at Boston University, Kennedy Krieger Institute (Baltimore), Mt. Sinai Medical School (New York City), University of California at Los Angeles, University of North Carolina at Chapel Hill, University of Rochester, University of Washington, and Yale University. Research currently being conducted at the eight sites includes early characteristics of autism, diet, and behavior in young children with autism, citalopram for children with autism and repetitive behavior, and relationship training for children with autism and their peers. National Institute of Mental Health (NIMH) Office of Communications 6001 Executive Boulevard, Room 8184, MSC 9663 Bethesda, MD 20892-9663 Phone: 866.615.6464 Web site: www.autismresearchnetwork.org/AN
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TASH TASH (formerly The Association for Persons with Severe Handicaps) is an international association of people with disabilities, family members, advocates, and professionals who believe in the inclusion of individuals with disabilities. TASH provides numerous printed and online materials and resources that are timely and accurate, including a monthly newsletter and an annual conference. 29 W. Susquehanna Avenue, Suite 210 Baltimore, MD 21204 Phone: 410.828.8274 Fax: 410.828.6706 Web site: www.tash.org
KATHERINE E. COOK
UNITED STATES DEPARTMENT OF EDUCATION The U.S. Department of Education was created in 1980 with a mission of creating access to education for all individuals and to promote excellence in education. The U.S. Department of Education Web site provides links to related government and state agencies. U.S. Department of Education 400 Maryland Avenue, SW Washington, DC 20202 Phone: 800.872.5327 Fax: 800.437.0833 Web site: www.ed.gov
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UNITED STATES DEPARTMENT OF HEALTH AND HUMAN SERVICES, NATIONAL INSTITUTE OF HEALTH Founded in 1887, the National Institutes of Health is one of the world’s foremost medical research centers, and the federal focal point for medical research in the United States. The NIH, comprising 27 separate institutes and centers, is one of eight health agencies of the Public Health Service, which, in turn, is part of the U.S. Department of Health and Human Services. 9000 Rockville Pike Bethesda, MD 20892 Phone: 866.615.6464 Web site: www.nih.gov
PATRICIA R. SCHISSEL
UNITED STATES DEPARTMENT OF HEALTH AND HUMAN SERVICES, NATIONAL INSTITUTE OF MENTAL HEALTH The NIMH was founded in 1949 and is dedicated to understanding, treating, and preventing mental illnesses through basic research on the brain and behavior, and through clinical, epidemiological, and services research. 6001 Executive Boulevard, Room 8184, MSC 9663 Bethesda, MD 20892-9663 Phone: 866.615.6464 Web site: www.nimh.nih.gov
PATRICIA R. SCHISSEL
UNITED STATES FOOD AND DRUG ADMINISTRATION This agency is under the auspices of the Department of Health and Human Services and information on a myriad of products, consumer’s rights, and policies can be accessed on their site. 5600 Fishers Lane Rockville, MD 20857-0001 Phone: 888.463.6332 Web site: www.fda.gov
PATRICIA R. SCHISSEL WRIGHTSLAW Wrightslaw is an excellent online resource for finding information related to special education law, education law, and advocacy for children with disabilities. This Web site is designed for parents, educators, advocates, and attorneys and provides access to articles, cases, and other free resources on topics related to the Individuals with Disabilities Education Act, special education, law, advocacy, and training and seminars. Web site: www.wrightslaw.com
TERRI COOPER SWANSON
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APPENDIX D: Personal Perspectives The Cement Mixer (Father) Finding Friendship and Support (Mother) Individual Education Plan Ideas (Mother) Interview with Cameron Blackwell (Adolescent) Interview with Craig and Jaime Blackwell (Siblings) Interview with Jen Blackwell (Mother)
Life, Newly Realized, on the Spectrum (Adult) Perceptions of an Older Sibling Reflections on Teaching Children on the Autism Spectrum (Teacher) Succeeding in College (Adult) Which Is It? Distinguishing Typical Development from Disability-Driven Behaviors (Mother)
THE CEMENT MIXER (FATHER) As a dad, when your child is diagnosed with autism, you go through many different thoughts and emotions. Most are heavy and deep, much like cement in a mixer. One by one they come to the surface as your mind evaluates what is ahead for you, your child, and your family. Slowly the cement hardens into resolve as you chart your course of action. In our family, it was no different. My wife and I have four kids, with our oldest dealing with Asperger syndrome and our youngest son diagnosed with autism almost 7 years ago at the age of 18 months. We have a boy and a girl in-between who are not on the spectrum. By the time our youngest was several months old, we could see that he was not hitting the same developmental milestones that our others had. My wife started quickly in getting therapists (physical, occupational, and speech) in to evaluate and help out. The therapists were very careful NOT to diagnose, but they were AMAZING at helping Jordan develop where he had not been able to before. By the time Jordan was 18 months old, I was looking forward to getting a complete diagnosis as a means to get him the help he needed and to ‘‘put a name’’ on what was ‘‘holding him back.’’ I kept asking my wife, ‘‘Why can’t we just put a name to this?’’ I thought it was going to be easy and that the neurologist was going to smile and say, ‘‘Folks, your son has autism (or PDD or Asperger syndrome).’’ And that would be that. The cement mixer was already churning and I just wanted solid answers. Enter the neurologist. After examining Jordan and talking with us, he told us that he thought Jordan had autism. He looked at me and said, ‘‘That’s what you wanted, right, a diagnosis?’’ He then proceeded to let us know what the probabilities were for everything that could go wrong (or right) for Jordan over the course of his life. ‘‘He has such and such percent chance of not talking . . . or being mentally retarded . . . or not being able to live independently . . . or . . .’’ It all kind of droned together and I ceased listening and became numb. The cement mixer churned a little faster that day as I found myself coming to grips with the new reality of things. Knowing that your son is not meeting some developmental milestones and hearing that he might not talk or ever be independent were far apart in my mind and they came crashing
APPENDIX D together with surprising force that day. As the cement mixer inside of me churned, there were several repeating thoughts that floated to the top. I was concerned for the life plans that my wife and I had made. We married and started a family quickly with the thought that we would have a few more ‘‘golden years’’ where we could enjoy grandkids and do missionary work in Korea (where we met). This was immediately followed by guilt for being so selfish as to think about ‘‘us,’’ but I couldn’t help it. This was altering our life plan and the trepidation that I felt about it was real. The feelings churned some more . . . Both Jen and I grew up with a strong sense of faith in our lives. Part of that was accepting that God had a plan for each of us and that we were all given obstacles as part of our life’s journey. My mind was at peace when I thought of my own experience. My brother and I were born 10 weeks premature and the doctors had told my parents similar things to what I had heard. I turned out just fine after overcoming a few obstacles, so why not Jordan? Our faith as a couple led us to look less for a cure and more towards being in the ‘‘obstacle removal business.’’ We discussed it on the way home from the neurologist. We decided that we were going to help Jordan fulfill what God had in store for him and we were going to subordinate our desires for what we wanted him to be. This was a very ‘‘freeing’’ experience for me. ‘‘Maybe God has enough basketball players on the earth and maybe he needs another scientist . . .’’ I told myself little affirmations like this to keep things on track and keep my confidence level up. More churning . . . How do I help? My thoughts turned to all of those ‘‘Super-Dads’’ out there. The ones who leap tall buildings in a single bound, cure their kids of whatever ails them, raise awareness, start a foundation, and name the wing of the local hospital after their son. I certainly did not fit that mold although I am certainly glad that some people do. Being an activist wasn’t the right way for me personally. Some days I wished I was one of them, but I just wasn’t. My wife was naturally suited to be a great advocate for Jordan. She has a degree in teaching and was known and well liked in our school district. She had a knack for finding the right people, knowing when it was a good fit with our son and establishing rapport with them to get the needed help. I am not the type to patiently work with people in an Individualized Education Plan meeting or take the time to go to the myriad of conferences and support groups available. If my role was not the activist or the advocate, then was it OK to be ‘‘just’’ a supportive dad? Would I be helping enough with that? Maybe I could be the source of ‘‘normal’’ in our family. Maybe the right role for me to play was just to be dad . . . All kids like to have fun, to play games, and to be inside their comfort zone at times. Autism doesn’t change that. It just makes them have different (and sometimes smaller) comfort zones. We needed money to pay therapists to work with Jordan. My middle kids needed to feel that they were not being overlooked. I decided that my role was to supply that comfort zone to each of our kids on their level, to help facilitate therapists and to provide general support where needed. More churning . . . What is it going to be like for Jordan? Since I didn’t view Jordan’s autism as something that needed to be cured, but rather an obstacle that he needed help with, what did he need? How could I give him enough confidence? Jen and I took a lot of time to research on the Internet many possible therapies and strategies for dealing with autism. That seemed to be the only way for me to calm my fears. And yes, they were fears. How am I going to deal with this with extended family? Everyone seemed to have their own opinion about autism and what we should do. Having a diagnosis only seemed to fuel the
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APPENDIX D firestorm of opinions being thrown our way and the opinions were very seldom based on facts. Almost always, they came from hearsay or projected fear. More often than not, everyone REALLY wanted to help, but was unsure HOW. Why does he have autism? Genetically whose ‘‘fault’’ is it? The questions and opinions were unending. From my point of view as a dad, I wanted to scream at ALL of them. I just wanted to fix things . . . That’s what guys are supposed to do, right? What came out of all the churning was a feeling of resolve. It was a unity between my wife and me as to how to proceed. We decided that we were going to enlist the help of the best people we could find to help Jordan and that we were going to pray for guidance as to who these people were. I was not going to be an activist for Jordan, but rather I’d be a father and husband who was supportive of Jordan and helpful to Jen in being his advocate. I was going to be the ‘‘Director of Normalcy’’ for our home and try to keep it a safe comfort zone for everyone. I am above all else, a dad.
ERIC BLACKWELL FINDING FRIENDSHIP AND SUPPORT (MOTHER) It seems strange to say my first reaction was relief, but quite honestly it was. The doctor’s question was, ‘‘Have you ever heard of Asperger syndrome?’’ At that moment all of our worrying, wondering, and questions were, temporarily at least, answered. Our son had a disorder with a name, and if there was a name, then there must be answers too as to what to do to help him. More questions came later, and eventually the grief hit too, followed by many more struggles. But for a single moment, we had peace. It wasn’t our fault; there was something ‘‘wrong’’ with our child. Looking back with knowledgeable eyes, we can see so clearly the answers to the questions we’d asked for years. Why does our baby scream and pull at the feet of his footed pajamas desperate to take them off? Why does our preschooler insist on lining up all of his toys in rows, but never play with them? Why doesn’t he respond when we speak to him? Why won’t he eat anything but three or four foods? Why does he have meltdowns and tantrums seemingly out of the blue? The answer was in all accounts, Asperger syndrome. And so our journey began. There were other revelations, some very painful. I visited the Web site the doctor suggested only to be shocked to learn Asperger syndrome also meant, gasp, autism. The first day I was in shock, especially after reading the word, autism. I called my close friend, Sue, who said, ‘‘That’s what Amy’s son has just been diagnosed with.’’ I knew Amy, she attended our church, and we often gave each other sympathetic looks as we passed each other in the hall. She was usually chasing her busy running child, while I was soothing my crying one. I called Amy hesitantly. I said, ‘‘My son has Asperger syndrome.’’ Her son was diagnosed four months previously, and she was light years ahead of me. She began reeling off information, resources, and people to call. I knew so little (nothing at all in fact) that I couldn’t respond to her, much less even have the least bit of an idea what to ask. Later she recounted, ‘‘I still remember how shocked you were.’’ For 10 days I did nothing. I had taken the assessment test online for my son; I knew he had Asperger syndrome, and that’s all I needed to do as far as I was concerned. Amy called to check on me. Dragging myself out of the thick volume of Chinese history I’d buried myself in, the fifth I’d read that week, I picked up the phone annoyed to be interrupted. I can’t remember what Amy said, but I didn’t want to talk with her. She wanted me to take some kind of action, I just wanted to read. Not think. Not cry. Not take action. Read about Chinese history. In other words, bask in denial.
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APPENDIX D At last the day came for our follow-up visit with the doctor. He said, ‘‘Did you take the test? Do you think it’s a match?’’ I tried to show it to him, he waved it off, not necessary for him to see it. Suddenly I felt panic. Hopefully, plaintively I inquired, ‘‘What do we do now?’’ I still remember his face. He hesitated. He had no idea. I walked out, with sudden resolve. I would find out what to do. I would call Amy. It was a torturous wait until a decent hour of the morning to call her. I’d been up most of the night checking the clock impatiently. I’d written out the various interventions listed online: diet, therapies, books to read, Web sites to go to. I was ready. The moment the clock hit 8:00 a.m. I picked up the phone. Amy had a list of her own, doctors’ and therapists’ names, therapy centers, and a list of phone numbers. While my previous coping mechanism had been withdrawal, hers had been not to leave her bedroom in the weeks following her son’s diagnosis, and she had ferreted out quite a list of resources and interventions. Excitedly, I began dialing. Five hours of calling later, I laid my head down on the dining room table and cried for the first time. I sobbed inconsolably. Our insurance didn’t cover any of these places, there were none in our area that they covered, no one could refer me elsewhere, and no one had any other solutions. I felt so completely helpless and hopeless. I did not know what to do. So I called Amy, and she walked me through it. Amy had a pile of ideas, but what she had most was a clear understanding of how I felt, and she offered me support. That was the beginning of one of the closest relationships I have ever had (along with Sue, who made up the triad of ‘‘girls’’). It was only the beginning. Amy and I had something in common besides the fact that our boys both had Asperger syndrome. Once we’d decided our course of action, we were both powerhouses. We each had our strengths to bring to the table. Although she read quite a number of books, I was the quick reader. The first time I realized I could go to a Web site, click on a book, give my credit card number and a package would show up at my doorstep two days later, I had found my niche. While I devoured every single Asperger syndrome book in print at the time (not exaggerating), Amy utilized her own gift. She was the conference-goer. She was the networking queen, soaking up information like a sponge and then carrying it back like an ant with breadcrumbs for me who waited salivating. She knew every presenter, every significant person in the autism community, testified for the state legislator, started a support group, and trained to be an advocate. I stayed home and read. Our boys became friends, too. I’ll never forget the day we ‘‘introduced them.’’ They’d been in Sunday school together for nearly 7 years, but as Amy said to Dylan, ‘‘This is Tom,’’ they beamed, put out their hands and said, ‘‘Nice to meet you!’’ I’m sure the joy on Amy’s face at that moment only matched mine. We spoke daily; the only break in the routine was when she went to a conference, in which case she’d call me on the way there and on the way home. We had good days and bad days. I remember one day I heard my call waiting, I clicked over and it was Amy sounding as though she’d been crying, ‘‘I’ll call you right back!’’ I hurriedly told her, I was on hold with the insurance company. I called her back in awhile crying, too. Our children’s evaluations had both simultaneously been rejected for payment by the insurance company. We both wailed, ‘‘It’s not fair!’’ Together we problem solved and devised strategies. Sometimes the strategies involved multiple phone calls, letters, and even complaints to the state insurance commissioner. Other times the strategies failed miserably and then we’d get on the phone to lament. We’d occasionally get impatient with each other, ‘‘Well, just submit it AGAIN!’’ That is true friendship, when you can say, ‘‘Shut up and just do it. I know you don’t feel like doing it AGAIN, but you have to!’’ Amy’s second son was diagnosed, then my second. ‘‘We’ve got to stop hanging out’’ she said giggling, ‘‘it must be contagious!’’ We laughed hard and often, and quite inappropriately. We vented, we commiserated, we cried. Our friendship evolved to the point where we knew each
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APPENDIX D other so well that we knew exactly what each other was going to say at almost any given moment, but our friendship was so close that we still let the other continue anyway. Daily calling has waxed and waned as our lives changed, as my third child was diagnosed, she made the difficult decision as to whether she should have another baby and then welcomed a beautiful girl into their family. Our roles have shifted in the last couple of years. The homebody and the social butterfly have exchanged roles for various reasons. Amy stays home, while I trek around to conferences, both of us content with where we are. We laugh about this too. ‘‘Been there, done that!’’ We say to each other. If something significant happens, good or bad, it is still Amy I want to call. Recently she told me one of her favorite memories was of me calling her from the ladies room at the ASA conference a couple of years ago whispering furiously, ‘‘Aim! Brenda Myles just asked me to write a book!’’ She laughed, she had loaned me my first book by Dr. Myles, not to mention the fact that she’d been nagging me herself for years to write. ‘‘See! I told you so!’’ she said smugly. Time has passed, but never the love we have for each other; the years of friendship we have built are enduring. Whenever I start to get sentimental and coo sappily how thankful I am for our friendship, and say, ‘‘What would I have ever done without you?!’’ Aim will retort, ‘‘Oh shut up! You would have figured it out!’’ Maybe, maybe not, but I’m glad I’ll never know.
KRISTI SAKAI INDIVIDUAL EDUCATION PLAN IDEAS (MOTHER) Many parents nervously face the ever dreaded eligibility and IEP meetings. If this is you, then you know why emotions run high. Nothing like just being a lowly parent surrounded by ‘‘experts’’ and teachers (which cause you to have elementary school flashbacks of being sent to the principal’s office) followed by being told everything that is ‘‘wrong’’ with your child as you cringe painfully. While staff may have the best of intentions, they are often perplexed by the intensity of emotions we carry into these meetings. But no wonder! This is YOUR child they are talking about. This is his future, his life, your family. A seemingly small comment about your child eating lunch alone doesn’t just mean, ‘‘My son is lonely.’’ Our minds immediately jump to, ‘‘My son might never have friends, never date or get married, he is going to be alone forever. What is going to happen to him after I’m gone?’’ This is not an irrational thought. Living as lonely adults is the reality for many people who have autism spectrum disorder (ASD), and as parents we’re well aware of this fact. We have a long-term, vested interest in our child, and we are poised and ready to fight to our last breath on his behalf. And, boy howdy, staff better know it, too! No wonder we so easily garner a reputation as a ‘‘difficult parent.’’ While I generally like to think I’m a reasonable person, I’ve done what my friend referred to as having ‘‘left a trail of bodies’’ behind me when it’s merited. Do I enjoy conflict? No. Is it sometimes necessary? Yes. But is it ALWAYS necessary? Absolutely not. So what do we do? If you are prepared, confident in your knowledge and abilities, and feel supported, you are better able to handle conflict or avoid it altogether. Know your child and the characteristics of ASD and how they apply to him. Is he extremely reactive to noise? Crowds? Smells? Create a list and take it with you, include the strategies you have found effective. These can be adapted for school use. For example, if you allow your son to wear headphones in crowded places, perhaps he can do the same on the noisy bus. Providing staff with concrete solutions shows them you know your child and they are more likely to respectfully consider your input. Provide documentation. Had a private evaluation done that backs up what you’re saying about your child’s strengths and areas that need attention? Take it with you. Don’t assume, as I have mistakenly done at times, that something is SO OBVIOUS about your child that there is
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APPENDIX D no question he is eligible for services. The written work with the signature of a qualified professional speaks more effectively than we ever can. In the case of eligibility this is especially crucial. Concrete evidence snuffs out many a conflict before it even sparks. Prepare goals. Have a list of long-term goals you have for your child and the short-term steps necessary to achieve them. For example, if your child is currently unable to be in the general ed classroom, but your long-term goal is that he will be able to, a short-term goal might be that he be able to participate in occasional classroom activities. The meeting is a wonderful way to elicit ideas and brainstorm with staff about their own ideas to meet those goals. Be open to their suggestions, you might be surprised at how once they understand the plan how willing they are to try new accommodations. Trust that you do know your child. Staff may be seeing a different child, that is, he may be exhibiting different behaviors you don’t see at home. Knowing your child as you do, the fact that he is having difficulties at school is an important indicator. If he is displaying what you would consider unusual behavior for him, then obviously he is stressed and needs supports in place. Believe the staff when they relate an incident, have empathy for those involved and resist the urge to immediately jump on them about how poorly they may have handled the situation. Instead, use this information to look for the hidden triggers that set him off, and a logical jumping-off point for creating supports. ‘‘My son has NEVER hit anyone at home. I’m shocked. Let’s talk about what happened BEFORE that, and see if we can figure out what set him off.’’ Remember that not everyone understands the characteristics of ASD and how they impact behavior. If staff feel you are listening to them they are more likely to consider what you have to say and implement change. Support yourself in meetings by bringing an advocate. Having support means we won’t feel ganged up on and are less likely to be defensive. Plus, everyone has different skill sets; perhaps yours isn’t to remain cool under pressure (And who can when it comes to our kids? Certainly not me!). An advocate can balance you out with complementary skills, reframe a question, and bring up points you may not have considered. He or she can also be the quiet type who takes notes, or simply kicks you under the table if you start to get side-tracked. Great choice: someone who knows your child and how to help him. These can include such folks as his private occupational or speech therapist or counselor. Better choice: someone who knows both your child and your family well. Try bringing someone who is in a related field who also happens to be a close friend, and barring that, a friend of the family who can lend moral support. Always refer to this person as ‘‘my advocate.’’ Also good: a professional who doesn’t know your child but who understands the needs of kids on the spectrum. Last choice is a professional who doesn’t know much, but who has a string of important letters after his name who is there to back you. But make sure you’re on the same page ahead of time, you don’t want to be blindsided by your own advocate. Emotional? Yes, I’d rather not burst into tears during a meeting, but it’s painful to be reminded in black-and-white documents what difficulties my child struggles with and on occasion it can be all too much. Sometimes there are tears, and embarrassing as I find that to be, I give myself that allowance because I’M THE MOM. This is my child and I’m doing my very best, but it’s not enough. I need the school’s support to help him grow into a productive adult. At times anger is what comes out instead of tears, but it all stems from the same place: our fears for our child, our frustrations that we aren’t getting the help that we so desperately need. But instead of simply expressing our emotion without explanation or resorting to personal attacks (a big no-no), be clear and go back to the original issues at hand: focusing on the child’s specific needs and how to meet them. And remember, if emotions are running high, it’s all right to excuse yourself to calm down, or even to reschedule. If there is ONE staff member who is consistently disruptive, remember that the other team members may not be happy about the
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APPENDIX D conflict either. Depending on who it is, you may be able to have that person removed from the invite list for the next meeting. Pick you battles. It’s a rare pigs flying kind of meeting for you to get everything you are asking for, but if it happens, thank your lucky stars. In most cases, however, you’re going to have to decide what you’re not willing to compromise on. Your child is best served by saving your fights for the significant issues; for example, I’d fight tooth and nail for appropriate placement. But bide your time on smaller issues that can be resolved over time if you build a close working relationship with the staff. You are The Parent and simply human. But it’s important to remember that although the staff is made up of professionals, underneath their credentials they are simply human beings, too, with their own fears, concerns, shortcomings, and desires. It takes a great deal of work and patience to build an effective IEP team, to get along, to balance give and take, but all relationships take effort, and most are well worth it. And when it comes to your child, no amount of effort is wasted.
KRISTI SAKAI
INTERVIEW WITH CAMERON BLACKWELL (ADOLESCENT) Background. Cameron is a freshman in high school, working towards an honors diploma. He was diagnosed with Asperger syndrome while in second grade. He has been very involved in his school and church, as well as attending autism-related conferences. His special passion is band. He marched with the high school band as an eighth grader and hopes someday to be a band director himself. Q: What does it feel like to have Asperger syndrome? Cameron: That’s an interesting question. You know you’re different from other people. You have different needs and other people are different from you. You realize that we’re all individuals, that we’re all different. Not everyone knows that I have Asperger’s. Q: Why don’t they know? Cameron: Several reasons: I’m very independent. I do a lot of things for myself. Some people I have told just because they’re really close to me. It’s just a sad fact about myself, something I need help with. Q: Do you feel like other people see the world differently than you do? Cameron: Yeah, I do. What I view about Asperger’s and autism, I view it as a different perspective, a different way of thinking. I view it as a different perspective. People with Asperger’s and autism, they are smart, we are just different from other people. Q: Describe your sensory world: what in the environment bothers you, for example, particular lights, sounds, touch, tastes, movements? Cameron: Yeah, I have gotten better. When I was eight, I was diagnosed with Asperger’s syndrome and I had a lot of sound sensitivities, but not light sensitivities, not other senses. Mainly sound. Now I am in band. I used to have sound therapy where I listened to classical music. Listening therapy was used about a year or two. Sound is better. In middle school I joined in the band, and learned to play a brass instrument. I’m a French horn player right now. I’ve become less sensitive to loud sensitivity. I’m trying to become more tolerant of the flute, but that’s not sound sensitivity. (Q: Any movement or balance problems?) I used to. I went to a gym and worked on balance beams. I learned a lot. I’m also in marching band. It takes a lot of stamina and balance to do that. I’m really progressing and I’m doing well and my balance is better because of that.
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APPENDIX D Q: What in the environment do you especially like? Cameron: I like—I honestly don’t know. I’m usually not aware of stuff like that. Q: Do you have behavioral difficulties sometimes? Cameron: No, I never do anything like that. I’ve never been in any disciplinary problems. I’ve always tried to follow the rules. Q: How do you deal with your feelings or emotions? Cameron: The way I deal with them is every day I try to jog for about an hour or so, so I’m away from everyone. I use that time to jog and think. That’s the way I deal with my emotions. Q: What do you want your teachers to know about you? Cameron: I want them to know that I’m hard working, that I do my best no matter what, that I do have trouble with organization and handwriting. I have some difficulties, but that is just a part of me. I will work hard and do my best to have a good year. Q: What do you want your peers to know about you? Cameron: I want them to know that I’m good person, that I try hard, I like them a lot, I want to be around them, that I do have difficulties in my life, that I’ve overcome a lot. I have situations that I have to deal with, that I’m claustrophobic, but they are understanding of that. Q: Describe your school experience. What do you do well? Cameron: Academically, I do really well. I’m an A/B student. I take all honors courses and I do band for extracurricular activity, and I have a lot of friends from band and in my classes. Q: What do you need help with? Cameron: Organization and handwriting. I need people to be understanding. I get a little sensitive to sound. That happens very rarely. (Q: Do you have someone to help with organization?) I have an OT who I see every two or three weeks. My teachers understand when I am disorganized—they call a meeting if they see I’m carrying around a mess. Q: What do you need to do to advocate for yourself? Cameron: I’m learning to do more of it. I do not like it but I’m learning to like it. I have to go to more meetings now. I went to my IEP meeting last year. (Q: What was IEP meeting like?) It was OK. My mom always brings treats so I just ate. It was OK. We talked about what I needed to do last year. I was transitioning to high school so there was lot of talk about that. Q: What type of recreational or community activities do you participate in? Cameron: I used to be in Boy Scouts, not anymore. I go to a couple of meetings cause they’re at church. I do participate in church activities, service activities, academic activities, band. My life is pretty busy with that. Not a whole lot else I can do. Q: What do you want to do after you graduate from high school? Cameron: First of all I may join a professional drum corps after high those for a year. In my church I am expected to serve a mission for in the world, so I’ll do that then I’ll go to college, hopefully on a scholarships. I want to major in music and music education and college.
school. I may join one of two years somewhere else band and some academic be a band director after
Q: Any thoughts on dating? Cameron: (laughs) Yeah. I’m gonna—I have to wait ’til I’m sixteen to date. I’ll probably date people within my religion most of the time. I’ll probably marry a girl after my mission. Q: Any other thoughts? Cameron: People with Asperger’s and autism have potential but that can only be reached if the people around them realize it, then they will act on it to realize their potential. A lot of people
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APPENDIX D don’t realize the potential. We do have obstacles in our life; we just need help getting over them.
ANN PILEWSKIE INTERVIEW WITH CRAIG AND JAIME BLACKWELL (SIBLINGS) Background. Craig is 12 years old and in his first year of middle school. He loves cooking, fishing, golf, and anything to do with dragons. He is in beginning band and enjoys attending his brother’s marching band competitions. Craig has his own cooking Web site for kids. Jamie, 10 years old, is the lone sister among all the brothers. She is in her last year of elementary school and enjoying being ‘‘top dog’’ for the year. She loves to sing and not only has she sung with groups at church, she has performed songs in sign language for both school and church. She loves to spend time with her friends and family. Craig and Jamie are siblings to Jordan and Cameron. Both of whom have autism spectrum disorders. Q: What do you most like about Cameron? Craig: I really look up to him. It kind of started not that long ago. He’s been in there [band] much longer than I have so I do a lot of learning from him. He helps me learn my instrument a little better. Jamie: That I get to see him in band. It’s fun just watching him out there. Q: Is there anything you dislike about him? Craig: One or two times he’ll try to get mad or upset. He likes his personal space. He likes to be alone a lot. Jamie: Since he’s older, since he has Asperger’s, when you’re around him he gets mad if you whistle too much or something like that. Q: What about Jordan? Craig: It’s nice to be around Jordan because he’s very good at memorizing things. It’s cool to have someone who can play video games at your level. He sometime doesn’t listen very well. Sometimes he doesn’t pay a lot of attention. Jamie: That he stands up for what he wants and stuff. When he speaks his mind freely most of the time he doesn’t know what he’s saying. Q: Do you ever feel left out, or that your parents spend too much time dealing with your brother’s problems? Craig: No not really. It’s not as bad as other families have it. Sometimes yeah, I do, not very often, but sometimes. Jamie: Yeah, sometimes when my mom has to deal with Jordan. She’s talking to him and she doesn’t know other things that he’s doing, and I notice him and she doesn’t really want to deal with them [the other things] right then.
ANN PILEWSKIE INTERVIEW WITH JEN BLACKWELL (MOTHER) Background. Jen grew up in the Northeast until her family settled in southern Indiana where she attended high school and college. She earned her degree in secondary education from Indiana University Southeast and later taught boys with severe emotional disabilities in a group home. Jen met her husband, Eric, while serving as a missionary in Seoul, Korea and they were married in 1989. Currently, Jen works in an inclusive preschool run by the local school district. Favorite pastimes include photography, sports, coaching her kids’ teams, and hanging out with her family.
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APPENDIX D Q: What was it about Cameron that made you seek professional assistance and diagnosis? Jen: Way back when he was little we knew there was something. We had no idea what it was. We knew he had to have ideas given to him a certain way. If he didn’t have things a certain way he didn’t get it. He had language delays at age 3. He started with a speech pathologist in the school district who was awesome! She quickly figured out he had more than articulation problems. He had pragmatic problems. She was very good. About 5 years later she sent me an article in USA Today about Asperger syndrome. She had worked with Cameron from ages 3 to 5. We found that he was 70 percent unintelligible at age 3. We went to [local] Children’s Hospital in Fresno and they sent us to the speech therapist. He [Cameron] went for speech and hearing in 1994. The school district gave the diagnosis. Indiana, at that time did not qualify Asperger’s, only autism. But, the special education director knew Cameron had Asperger’s so she wrote an IEP for him before the school year was ended. Q: What went through your head when you received the diagnosis of Asperger’s for Cameron? Jen: Huge relief. We were also in the process of getting a diagnosis of autism for our other son, Jordan. We knew with a label that we could get help then. Q: Talk about Cameron’s school experience. How did/does the IEP process work for you? Jen: The first few IEPs I made sure I had somebody with me. Other therapists for our son Jordan came with me to our IEP meetings for Cameron—probably the first 2 or 3 years. I talk to his coordinator a lot. We’re on a first name basis. We don’t want to sit there for 3 or 4 hours. I catch teachers in the hall or other places and discuss and have conversations with them, then bring it all (conversations) to the same place [IEP meeting]. I would make sure I had my lists going ahead of time. I always bring cookies and make compliments to people how they have helped. I give very specific and complimentary details to school personnel and also send them in a letter to the superintendent. After the compliments I can say, ‘‘But now we have this going on with him and how do we help now?’’ For example, the principal would ask, ‘‘He has all A’s and B’s, why do we need to serve him?’’ If he has sensory needs why would you take those supports away? Q: Have schools been receptive to working with Cameron’s (and others’) unique needs? Jen: For the most part we’ve had a pretty good reception. We’d ask for only one thing every year: ‘‘Can we please know who would be his teacher before school started?’’ The answer was always, ‘‘No.’’ Even the special education department wanted him [Cameron] to know. The OT took him in before school started one year to meet the teacher. Middle school was a little harder to pull out of classes for services. Band really met his sensory needs. We used Samonas Therapeutic Listening for a couple of years at home. Saw a huge difference in him. We’re not interested in intrusive interventions. Q: What supports were already in place and what did you have to ‘‘teach’’ the schools? How do you have to advocate for Cameron? Jen: School has been receptive but the school knows we have a lot of knowledge. We sit with school people and exchange knowledge. We go to conferences and trainings together. We eat and laugh together, and even though sometimes things are horrible, we get along. It’s about teamwork. Getting in a contest with them once doesn’t promote teamwork. So far so good. I had an OT who also had a son with Asperger’s syndrome so she was able to help the school regarding sensory issues and teaching the assistants, teachers, and principal. They did get it at the end. Q: Describe your proudest or happiest moments with Cameron. Jen: Easy one—there’s two: The little boy who was absolutely miserable at school in second grade, he had no friends, isolated himself from other kids, paced the playground at recess, in
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APPENDIX D fifth grade was selected by his peers as the ‘‘Road Runner,’’ the name for their school mascot. The ‘‘Road Runner’’ is an award given to the best all-around good friend to everyone, a good person and good friend, the best representative of the school and class. His class gave the award to him. The second one is marching with the high school band. He was invited as an eighth grader. He had to march to this complex huge drill. This year’s show could take them to state finals at the RCA Dome. Everyone who knows him knows how incredible this is! I can’t watch him without being in tears. He was voted band member of the year last year. Q: How do you meet the needs of all members of your family? Jen: Craig [12-year-old son] is gifted, and Jamie [ten-year-old daughter], she is neurotypical. Like anybody with four kids you take them individually, one at a time. Eric and I try to spend oneon-one time with each of them—Eric mostly with the two in the middle and I do the kids on both ends [of the sibling order]. We try to include everyone with all activities and for all to support each other. Craig will go to ‘‘sib shop’’ workshop. We try to do special things just for each of them—try to take their passions. Cameron is in band; Craig is into cooking and wants to be a chef. Jordan is into golf and Jamie is trying to find herself—she likes to sing and is artistic. We try to build them up on their own. We try to find balance not over one day, but over time. Q: Is your family different from the ‘‘idealized’’ American family? Why and how or why not? Jen: We laugh at what’s ‘‘normal’’ anyway. We are as typical of a family as any other family with four kids. We go to church. The autism thing is our challenge. We deal with it. Other families have other challenges. That’s how we look at it. Q: Describe a special family memory. Jen: We went to Florida for spring break. My uncle lives down there and likes to play golf. We drove for 16 hours in a car—it was a blast! Each kid had their own electronic device on the trip. This was the first time in years we got to spend time with family—just really neat. Q: Do you have tips or suggestions to share regarding family life raising a child or children with ASD, for example, going to restaurants, shopping, vacations, or leisure activities? Jen: Do it! It’s hard. I was on a parent panel recently and I was asked to introduce my family first. After I talked about my family, the person next to me said, ‘‘We have it really hard.’’ Everybody’s family is hard. We had the expectations that we would just do it. We usually go to buffets rather than sit down restaurants. Jordan can’t wait that long to be served. They [the kids] sort of rise to the occasion. You can’t stop your whole life or you’d be miserable. They can be your life but you have to have a life, too. Q: How do you take care of yourself? Jen: You have to do something for yourself. I go to conferences that are uplifting like MAAP. I enjoy listening to things that are uplifting. I like photography. I will shoot pictures at the games the kids play at. I sometimes will just close my door. I can go to the grocery store by myself. Most of all I have good friends.
ANN PILEWSKIE
LIFE, NEWLY REALIZED, ON THE SPECTRUM (ADULT) Bleeping horns. The sound of someone eating an apple. A ticking clock. Hurried conversations. All around us, in every day, we are subjected to a barrage of sensory messages that most of us ignore without even thinking about them. Every day, most of us interact with the world around us without giving much thought to how we are doing it; it just comes naturally. This is not, however, the case for the person on the autism spectrum. Asperger syndrome is a form of autism that was not officially recognized and put into the DSM-V until 1994 (APA). There has
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APPENDIX D been a huge lack of public awareness and knowledge of this disorder, although it has gotten more attention in recent years. As a result of this knowledge gap, many kids, teenagers, and adults are walking around every day carrying feelings of extreme isolation and difference from those that surround them but never quite knowing why. I have been one of these people. I am 21; a college senior at Goucher College in Baltimore. I have a 3.7 GPA in my college and always did well in school, but all my life I have lived with the knowledge that something was ‘‘different’’ about me, something I couldn’t quite figure out. I kept to myself as a kid. I entertained myself and lived in worlds I created for myself. I was happy enough until about the seventh grade, when an unsettling realization hit me. I realized for the first time that I had no friends. I had never had any desire for them before, but I wanted them now. I observed other people pairing up and doing things together. I noticed them talking and laughing and walking to class together. I suddenly felt lonely. For the first time in my life, I wanted friends. But I had no idea how to get them. I had always regarded people as targets to avoid, inscrutable objects that could be potentially dangerous to me. Now I felt a desire to relate to them. It seemed, though, that I did not speak the same native language as them. I had no idea what to do with them. I was the target of quite a bit of bullying and harassment my eighth grade year. I shrank away from people much more after this. Still, I wanted friends. In high school I got my first taste of this. My junior year and senior year, I was befriended by a few girls from my classes. For the first time in my life, I experienced what it was like to ‘‘hang out’’ with people, to go to their houses or just have conversations with them. Despite these burgeoning friendships, though, I still felt troubled. I wanted to know why it was so hard to make friends with my peers. I wanted to know why I still felt so isolated, like there was a thick wall between me and other people. I had a pretty good life: I had things I was interested in, people to talk to when I wanted, a family that loved me, all the things I could really want. But I became more and more desperate to find out the answers to the question of my differences that had always plagued me. I wanted to know why I didn’t dress the same as others my age, always placing comfort high above fashion. I wanted to know why I didn’t have any of the same interests as my peers and why ‘‘friends’’ seemed to be like the seventh class in my senior year schedule. All very intangible things, and I was reassured over the years by therapists, guidance counselors, and family that there was nothing different about me, that I was just like everyone else. That I was maybe a little anxious around my peers but that I’d find friends. All I had to do was meet people with similar interests. I knew this wasn’t true. I knew that I was different in some essential way, some way that I had absolutely no words for but that I felt in the deepest recesses of my heart. I knew it in the way that I felt so cut off from people—the feeling that no matter how many interests I shared with a person, we somehow had two completely different ways of communicating and would never be able to connect on the level that I needed. People tried their hardest but nobody had any answers for me, so I learned to cope. I shut out the outside world as much as possible and learned to take pleasure in my own world, in things that I found enjoyable. The schism between the way I experienced and related to the world and the way that all of my peers experienced and related to the world kept growing and growing, and I felt more and more torn. I wanted desperately to be a part of the world around me, but found it so difficult, so cumbersome. It took so much energy. It was so much easier to retreat into my world. Yet, I knew this would lead nowhere I wanted to go; the isolation was becoming unbearable. And then, at age 21, I learned of Asperger’s syndrome, and for the first time in my life could fit my behaviors and way of experiencing the world into an already established pattern. I fit somewhere. There was a perfectly logical explanation for my difficulties. Now, instead of spending all my energies trying to shut out a world that did not understand me, I could find a
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APPENDIX D segment of the world that did. I could start to forgive myself for all the transgressions I had so painfully made over the years without knowing why. I could find other people who ‘‘spoke Aspie.’’ Thinking back over my life up until now, I am amazed by the sheer amount of effort those with AS must make just to get through each day, by the amount of coping techniques we must intuitively come up with and practice. We are bombarded every day with so much overwhelming sensory information. Our clothes are too tight, making eye contact can literally hurt, the sounds of everyday conversation, of a clock ticking or someone tapping a pencil against the desk can drive us out of our minds. Certain smells can overwhelm us, the lights are too dim or too bright, we just don’t feel comfortable in our bodies. It’s very hard for us to actually relax, because there always seems to be a threat lurking somewhere. Every interaction we have is like solving a 500-piece puzzle before the time is up. When we see a person we would like to interact with, first we must decide if we have enough energy to go through with the interaction. Whereas a large segment of the population gets energy from interaction with others, for us it can be sometimes dangerously overwhelming and depleting. It is like a forbidden fruit that we would like to enjoy but must weigh the consequences. Then we have to figure out, often in just a few seconds, what we’re going to say and how we’re going to say it and try to double check it before we say it to make sure, to the best of our knowledge, that it might be something that could flow reasonably into the conversation. We have to call up old scripts and decide which is most appropriate for the situation. And on top of all that, we have to make it sound as natural as we can. If you were a native English speaker with some background in the French language, and you spent a month in France, you would find yourself trying to translate your thoughts in English to French before you spoke them. This is very similar to what happens when an AS person must talk: they have to translate their Aspie way of thinking to a more neurotypical format. This can be a difficult task if you don’t know the language well; slip-ups are bound to happen. It ends up being a very time-consuming and exhausting process to continuously go through. When I was growing up, I constantly felt like I was speaking a different language from everyone around me. I would have such a hard time conveying what seemed to be the simplest of things, and felt like I was constantly being misunderstood. What a relief it is later, then, to find in so much of the literature on Asperger syndrome those same very words: ‘‘People with Asperger syndrome speak a different kind of language than their peers.’’ This is, of course, due to the fact that we do not understand nonverbal language. We do not pick up on those small signals, those nuances in the way you say words that are supposedly meant to carry so much meaning. We won’t see the reassuring look in your face because we can’t read your face. We only hear the words. When we talk, we might over-explain something due to the fact that so much of what people take for granted as being understood, we have no way of knowing is understood; we are awkward and clumsy because we are trying to put words to emotions and feelings that most people are able to communicate nonverbally. We are creatures of habit and have a great need for structure and routine; disruptions in our routine can wreak havoc on us. There are so many things that can make us feel off balance and it can be very difficult to recover from this. I think the hardest thing for me as a person with AS is the feeling of always being on the edge. The feeling that yes, I’m coping now, but at any minute I could loose my hold and become completely overwhelmed by the world around me. This is terrifying in so many ways and something I deal with so much every day. I try to structure my days and my routines in such a way that I feel as calm and stable as possible, and I am always making sure I am engaged in some activity or another so that I give myself as little chance as possible to succumb to the terror of the unknown—but it creeps up on you during every down time that you have, and you fight it as best as you can, promising rosier visions of
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APPENDIX D the future, promising that there will come a time when you aren’t so scared. You learn to focus on the one or two things that made you happy in any given day and fixate on them, hold on to them for as long as possible, using them as your reason to keep fighting. There are many little things we do to cope with all of the pressures we feel. I personally carry lavender lotion around with me everywhere; I find the scent and feel of it calms me down when I’m approaching an overload quicker than just about anything. The feeling of water against my skin is also a stimulus that is very calming to me. Recently I’ve figured out that water fountains tend to have much colder water than some public sinks, so I’ve taken paper towels and put them under the spray of the water fountain to make them as cold and reviving as possible. There are so many little things like that that we notice that no one else would, so many things that we must intuit to do to help ourselves function in this world. So many people are apt to pass off people with AS or any of a number of other disorders as somehow less intelligent or someone not worth getting to know. If they’re clumsy socially, they must be clumsy mentally, right? But the fact of the matter is we have to be quite intelligent to figure out a way to deal with the foreign world in which we live. At any given moment, we are planning out everything that will happen the rest of the day so that we are not taken by surprise by anything. We are thinking ahead to try to figure out if a proposed activity will be safe for us and not contain too much sensory overload; we are figuring out how much downtime we need to program in to anything we schedule ourselves to do. I explain all of this just to give the average person an idea of what it is like to live on the autistic spectrum, and especially an idea of what it is like to live there without knowing about AS. While it is a struggle, it is not an impossible one. There are benefits that go along with it, too: the ability to remember large amounts of information related to your interests, which could be helpful for those who manage to get a job in a field of interest to them; the ability to focus single-mindedly on a task to get it done; and a great deal of honesty, loyalty, and perseverance. AS employees are much more likely to stick to the rules and do exactly what you have told them to. People with AS won’t tell you one thing one day and change their mind the next; they are unfailingly honest. They’ll tell you what they mean; you won’t have to play guessing games with them. It is only by learning about each other’s struggles and challenges and really trying to understand them that we can build a world that is safe for everyone to live in. A world where its inhabitants don’t have to live in fear of being different, but can instead embrace it—a world where we can truly grow and improve because we are taking advantage of everyone’s strengths, not just the strengths of a selective few. That is the kind of world that I want to live in. It’s the kind of world that we all want to live in.
REFERENCE American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
KATE GOLDFIELD PERCEPTIONS OF AN OLDER SIBLING When I was a little girl, my biggest wish was to have a baby brother or sister. Actually I preferred a sister, but at age 8, after years of begging and praying every night, I would have taken either. I remember the big day when my dad came to pick me up from school. Heather had arrived and I was given the honor of choosing her middle name. At the hospital, I helped dress Heather in her first outfit. It would be the beginning of many firsts we did together. Heather took her first steps to me. I taught her how to climb up on the couch much to my mother’s
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APPENDIX D chagrin. I was Heather’s teacher and she was my wish come true. Being 8 years apart removed a lot of the normal sibling drama. My mother says that she knew Heather was special, soon after she joined our lives. As a baby, I was very demanding while Heather was content most of the time. She was a very good baby and rarely cried even after undergoing surgery to correct her eye problems. Although I was young enough not to remember the steps leading up to Heather’s developmental testing, I clearly remember the psychiatrist trying to explain to me that Heather had autism. I remember disagreeing with him in my strongest 10-year-old voice and personally vowing that it would not be so. So began Heather’s early interventions, both research based and ‘‘experimental.’’ Heather started high-risk preschool at the nearby university hospital. At home, I started my own interventions. We had a thin camouflage blanket that had a slick texture on both sides. Heather loved to be wrapped up tight like a caterpillar in a cocoon. I consistently got in trouble for ‘‘tying Heather up.’’ Heather loved it. Today we know deep pressure can be very calming for persons with ASD. My mother thought it was sibling war. It was Heather that led me to choosing my career in the field of autism. It is my relationship with her and my experience of growing up in our family that gave me a yearning to reach out to children with autism and their families. After college, I completed my master’s degree with an emphasis in autism and behavior disorders. I’ve taught 10 years now in the public school setting. I enjoy the opportunity to work with these amazing children and their families. Heather is in her twenties now. Navigating the world of vocational rehab has proven difficult. Although she attends several different day programs, none of these have been individualized to meet her specific needs for gaining independence and caring for her health. Heather continues to live at home. And yes, she has limitations according to the ‘‘real world’’ but what does the world know? During a recent visit with Heather, I realized how many amazing abilities she possesses. Although Heather often appears to tune out in a social setting, she is quick to notice and stop her 3-year-old nephew when he steps outside the safety ring of adults. She would actually go after Jonah, pick him up, and return him back to an area that she considered safe. Often I wouldn’t realize Jonah had wandered away, until she came lugging him back with a proud look on her face, while he squealed with excitement. So much for a mother’s watchful eye. One of Heather’s other amazing talents is her creativity with yarn. She can crochet anything she can imagine, without a pattern. She has created amazing doll costumes, tutus and even dollhouse curtains armed with only a crochet hook and yarn. She has crocheted newborn hats and sewn blankets that were donated to a children’s hospital in memory of her nephew, Noah, who passed away before the age of two. Heather struggles with processing information yet she can follow a long string of verbalized crochet directions without any delay. Being the first born, my mother spent hours trying to teach me various handwork. I was an unwilling and difficult student and lacked the patience to participate for very long. Heather was a different story. So when it is all said and done, I think perhaps, I am the one with limitations in this crafty family.
VALERIE JANKE REXIN
REFLECTIONS ON TEACHING CHILDREN ON THE AUTISM SPECTRUM (TEACHER) As a teacher working in a small, private school, my experience with children who have been diagnosed with an ASD has been somewhat limited. I suspect that I have taught a number of children who may not have been diagnosed or whose parents did not share information because
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APPENDIX D they were afraid of the ramifications of such labeling for their child. I also suspect that I have taught others who had received an early diagnosis and proper intervention, and were doing so well that the parents did not feel it necessary to share that information. Though I understand the dilemma of wanting to protect children from the stigma and misunderstanding that may come with such a diagnosis, it has been my experience that children who are diagnosed as early as possible, where effective therapies have been on-going, and where there is good communication between school and home, have experienced greater school success. As I reflect on my experience with students on the spectrum, two children come immediately to mind. In both cases, the parents were well-educated and very caring people who wanted the best for their children. The children had ‘‘social problems’’ or were described by previous teachers as being ‘‘socially immature.’’ Both families had sought help from their public school districts. Both were told that their children had ADD but did not meet the qualifications for special education, and, dissatisfied with this response, both families received outside evaluations and counseling for their children. Both families turned to private education, hoping that the smaller class sizes and challenging curriculum would be the answer to their child’s problems. Neither child was properly diagnosed until major events at school precipitated an adequate evaluation that targeted the problems encountered by these two children. Though these children were very bright, in the end, both children ended up leaving the private school setting and were eventually diagnosed with Asperger syndrome, one at age 13 and the other at age 11. The most striking thing about this to me was that in one case in particular, the signs seemed very obvious. I had very little training or experience with ASD and yet suspected Asperger syndrome within two days of having this child in my class. It seems terribly tragic that a proper diagnosis and appropriate therapy had not begun years before when the chances for school success would have been significantly increased. Without such therapy, these two children were ill-equipped to deal with the social demands of the classroom. The impact on the other children, even with some of the valuable lessons learned, was still less than satisfactory. They were certainly no more equipped to deal with the conflicts and constant disruptions than I was. And I felt helpless to provide what I most wanted for both children: an environment in which they could thrive and succeed. With only suspicions and symptoms to go on, it was very difficult to know how to do much more than muddle through from one problem to the next. Another student I taught was diagnosed by the first grade with a central processing disorder. I had this student in my fifth/sixth grade multiage class. His parents were very open about his needs and in constant communication with me about his progress. This consistent communication gave the therapist who was working with him the information she needed in order to target specific behaviors and problem areas. The family offered her as a resource for me, and we met several times to discuss strategies that she had found to be effective with the student over the many years she had worked with him. Through this process, the child gained much confidence and the skills he needed to succeed in an academically demanding learning environment. He had a solid group of friends who were very supportive of his learning differences, and though they were not aware of a label, they did know that their friend processed information differently than they did. Because his parents were open about this, and he was very aware of both his weaknesses and strengths, we were able together to educate his peers about how people think, learn, and communicate in different ways. Given honest information and some helpful tools for conflict resolution, the kids were able to take this in stride, and the child had several close friendships and was generally well liked by his classmates. A supportive family, on-going therapy, and a positive school environment made it possible for him to thrive socially and academically.
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SUCCEEDING IN COLLEGE (ADULT) College can be a very daunting prospect for anyone, but if you have an autism spectrum disorder, it can be downright terrifying. Living on campus? Interacting with other people? Being away from home? It can sound like a nightmare. But if you know a few things before you start, it can become a very manageable prospect, that anyone can do, even an individual on the autism spectrum. I would like to share with you what I believe the most important tips are to succeeding in college for individuals with an autism spectrum disorder. Most importantly, make connections with whoever you can. These will become your lifeline. Try to befriend your professors; they are often much easier to interact with than your peers. Try to choose a college small enough where you will be able to have a relationship with your professors. Stay after class and talk to them about the assignment or a particular idea you had about one of the topics from class. Comment about the weather. Ask their opinion of school-wide issues. Any kind of repeated small talk leads to a feeling of connection, and a genuine friendship. When you need to talk about more serious issues or need help with something, you will have natural allies. These connections will keep you from feeling too lonely, and give you a sense of connection to and belonging within the college. You will most likely find doing this with professors much easier than with your peers. The second most important thing is to accept that you are different. Don’t waste all your time comparing yourself to others. Know that you may appear different, talk different, walk different, and have different interests. It’s not worth beating yourself up over. You’ve known this for a long time; it’s old news. If you choose the right college, the student body won’t care that you’re different. Look for smaller, quirky colleges with a more welcoming student body. At my college, I was quite self-conscious my first few years, but eventually grew into myself and didn’t care that I appeared different. Instead, I reveled in it. This gave me more confidence when interacting with my peers and helped me to make friends. Take classes in what you are truly interested in, not what other people tell you to. Boredom is the most surefire way to fail academically. Follow your passions. Make the material your own. When you are assigned a project or a paper, think to yourself, ‘‘What do I want to say about the world, or myself? What do I want to find out about the world or myself? How can I express this in this paper in a meaningful way?’’ Find something that engages you and you will excel academically and really get something out of the process in the meantime. At my college, I really enjoyed when we got to do portfolios in my psychology classes. We were allowed to express our learning of the material in any way we wished: through essays, song lyrics, paintings, research papers, or whatever we liked. I was able to really explore myself and the world around me while doing these portfolios. Work around sensory concerns. College can be a sensory nightmare, but only if you let it. If noise is a problem while you are taking tests, ask to take tests in a separate room or the learning center. If you have a problem with perfumes, have the teacher ask the class not to wear any. If you tend to get overwhelmed while being out and about on a busy college campus, get a Walkman or iPod to listen to while you walk around. This will soothe you and give you something to concentrate on. Figure out the way you relax best and work time into your schedule to do it. Find a nice, quiet place on campus where you can retreat when you need to. For me, that was the basement of my school library. I personally had trouble going to sleep at night when I could hear any noise at all coming from any of the other dorm rooms. So I scheduled late classes and made a point to stay up until two or three in the morning when I was sure everyone else had gone to sleep. Unorthodox, yes, but it worked throughout the time I was at my college. Find something you enjoy, and do it regularly. Make you sure you leave time to relax. Don’t stress out if you don’t have anyone to do it with. There is no law stating you can’t go out to dinner by yourself or to a movie alone. Sometimes, it is even more enjoyable that way. Take
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APPENDIX D yourself out on the town. I used smoothies as rewards for difficult tasks, and regularly went into town by myself. I wandered around and forgot about school for a while. Organization is important. Knowing yourself and your patterns, and having a routine, is key to succeeding. What time of day do you work best? Morning or night? Before dinner or after? Do you work best under the pressure of deadlines, or do you need to break tasks into smaller, more manageable chunks? Do you need an area with no distractions to work in, or does some amount of activity stimulate your thinking process? These are all important things to know about yourself. Have a schedule of when you will do all your work, and stick to it. Invest in binders and keep work neatly labeled where you can find it. Try to work around the same time every day. Finally, and this is very important, ask for help if you need it. Most colleges have learning centers where you can get extra tutoring or other accommodations. Don’t be afraid to be a pest when asking teachers to clarify assignments—it’s better than getting a bad grade. Utilize e-mail to ask questions of professors if talking to face-to-face is too difficult. Make sure you have a source of support. The counseling center in your school can be very useful to help you deal with the myriad stresses of a college career. Make sure you have someone to talk to, whether that person is a friend, a professor, family member, or whomever. If you follow all of those tips, I think that you will find you really enjoy your college experience. Your college years are particularly notable because not only are you learning a ton of stuff academically, but you are also growing so much as a person. You’re learning how to live on your own, how to interact with others, how to discipline yourself and stay motivated. You’re learning about things you are interested in, and new ways to express yourself. You’re building an identity for yourself. I wish you all the luck as you travel down this important path!
KATE GOLDFIELD
WHICH IS IT? DISTINGUISHING TYPICAL DEVELOPMENT FROM DISABILITY-DRIVEN BEHAVIORS (MOTHER) Our son, who has Asperger syndrome, will turn 18 in November. For what seemed like a sea of endless days and one thing after another, I am astonished at how quickly the years have passed. I can remember from the earliest days when he was a little more than 2 years old and having major meltdowns, or insisting the toy trains stay strategically across the living room floor, to the constant state of chaos and disorganization that we have now, the question has always been, ‘‘Just what can I blame on the Asperger syndrome and what is garden variety kid stuff?’’ I take great comfort in knowing that I am not alone in the world with my own obsessive tendencies toward this issue, because I also work with many families whose children are in the same boat and we all ask the same thing. Since many of those children are younger, I often appear to be the one who has the most combat time, if you will. The answer is simple: ask a behaviorist and it is all environmental and learned; ask a pediatrician and it is developmental and most certainly will be grown out of at some point; and then ask your spouse or the babysitter and it is just plain WRONG. Along the way, I have catalogued most everything by one of these disciplines and come up with some general guidelines to decipher the mixed messages flying about and give each faction its due in part. Whose problem is it? Now this is certainly grounded in most parenting classes, but since our kids have great difficulty assessing the cause and effect of social situations, it is often a situation where we as parents or teachers or innocent bystanders find ourselves targeted for blame in a pinch. So, if I can decide reasonably whether I am impatiently asking for compliance when an extra minute wouldn’t hurt, or is my child allowing his fondness for video games to interfere
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APPENDIX D with the rest of the world, I will be in a much better position to respond without making anything more unpleasant than it already is. Is it a ‘‘hardware’’ problem? I have become a firm believer in understanding the neurological underpinnings to the best of my ability, so there are a few basic principles I allow for in my deliberations. We know that our kids just don’t understand or attribute other people’s motivations for their words or actions well; forming abstract concepts or the ‘‘big pictures’’ is quite tough sometimes and knowing that most kids on the autism spectrum have sensory processing deficits regulating their responses or being overly aware of their physical surroundings, I know that they are prone to overreacting but can be taught strategies to become more socially appropriate. So the moral of that story is this: Educate yourself thoroughly about what’s going on in their heads. Don’t forget that everyone is human. Inappropriate behavior is never a good thing, but respectful, POSITIVE approaches are much more effective at correcting the problem and, most importantly, preserving a better relationship with your kids.
SHERRY MOYER
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Index Page numbers in bold indicate main entries. AANE Newsletter, 425 AAPC Newsletter, 426 AAPEP. See Adolescent and Adult Psychoeducational Profile ABA. See Applied behavior analysis ABC. See Autism Behavior Checklist ABC Analysis. See Antecedent–Behavior– Consequence (ABC) Analysis ABC-Iceberg, 423 Ability level, 95, 424 ABLLS. See Assessment of Basic Language and Learning Skills Abstract concepts: I LAUGH model, 173–74; symbols, 34; teaching, 161 Abstract information organization, 162 Abstract language, 91, 174; cartooning, 65 Abstract reasoning test, 165–66 Abstract thinking test, 386 Absurdities, 1 Academic achievement, 407; test, 29, 73 Academics, 212; developmental therapy, 104–6; visual skills, 198 Academic skill, 15, 151, 227, 276 Academy of Dance Therapists Registered, 96 Accommodation, 1; assistive technology, 25; auditory processing, 68; educational placement, 211; independent employment, 180–81; Individualized Education Program, 182, 190; loss and setback guideline, 161; reasonable, 272, 324; SCERTS model value, 314; school assessments, 189–90; Section 504, 324; social, 354–55; teaching methods, 161; transition planning, 188; visual clarity, 368; voting machines, 405–6 Achievement, 29, 111 Achievement test, 73, 108–9, 182, 407, 414
Acquired epileptic aphasia, 207–8 Activities of daily living, 1 Activity, 67, 91, 193; escape, 126, 152; joint routine, 201–3; participation, 105; planning, 89; preferred, 257, 265–68; priming, 279–80; SCERTS model, 316–18; self-regulation, 331; sensory motor, 331–32; Sibshops, 340–41; social scripts, 350; spontaneous play, 360; substantial limits, 323; task analysis, 283; visual schedule, 367 Activity Based Strategy, 201 Activity period strategy, 83–86 ADA. See Americans with Disabilities Act Adaptive behavior, 1–2, 36, 42, 409; Asperger’s disorder, 22, 168; development, 72, 103; independent behavior scales, 313; mental retardation, 221–22; routines, 202; scales, 313, 396–97; SCERTS model, 314; sensory integration, 333–34 Adaptive social functioning, 36 Adderall, 363 ADHD. See Attention Deficit Hyperactivity Disorders ADI-R. See Autism Diagnostic Interview– Revised Adolescent: anxiety disorder, 13–14; Asperger Syndrome Diagnostic Scale, 23; Cognitive Behavior Modification, 79–80; differential ability scales, 108–9; dysexecutive syndrome, 48; language test, 376; problem solving test, 378; psychoeducational profile, 3; self-determination, 328 Adolescent/Adult Sensory Profile, 3 Adolescent and Adult Psychoeducational Profile (AAPEP), 3
INDEX ADOS. See Autism Diagnostic Observation Schedule Adrenal gland, 115 Adult, 105; anxiety disorder, 13–14; assessment, 3; bullying, 54, 56; dysexecutive syndrome, 48; language test, 376; residential support, 302; selfdetermination, 328; supports, 4–5 Adult-directed approaches, 260 Adult service agency, 370 Adult supports, 4–5 Advance notice, 161 Advocate, 5, 44; family, 384; parents, 59; personal perspective, 452, 455–57; self, 180, 327–29; transition planning, 384 Age: appropriate, 5; chronological, 74; developmental, 97–98, 103; majority, 182; mental, 221 Age group, 202 Ages and Stages Questionnaires: Social/ Emotional (ASQ: S/E), 5 AHA E-List (newsletter), 425 AIT. See Auditory Integration Training Alcohol abuse, 305 Alertness, 96, 331, 332 Allergy, 5, 122, 176 Alternative assessment, 6 Alternative behavior, 61, 150 Alternative school, 358 American Academy of Child and Adolescent Psychiatry, 437 American Academy of Neurology, 244 American Academy of Pediatrics, 103, 244, 389, 434–35 American Art Therapy Association, Inc., 20 American Association on Mental Retardation, 222 American Bar Association, 405 American Hyperlexia Association, 437 American Journal of Human Genetics (journal), 429 American Journal of Occupational Therapy (journal), 429 American Journal of Speech Language Pathology (journal), 429 American Medical Association, 165, 430, 433, 437–38 American Music Therapy Association, 227, 438 American Occupational Therapy Association, 438 American Physical Therapy Association, 438 American Psychiatric Association, 106, 235 American Psychological Association, 438–39
472
American Sign Language (ASL), 6 American Speech-Language-Hearing Association, 358, 429, 439 Americans with Disabilities Act (ADA), 5, 6–7, 25, 59, 405 Amino acids, 7, 110 Amygdala, 7–8 Analysis of behavioral function, 8 Analysis of Sensory Behavior Inventory– Revised Edition (ASBI-R), 8 The ANDI News (newsletter), 425 Anecdotal report, 8; Antecedent-BehaviorConsequence Analysis, 12; testimonial, 376; treatment effectiveness, 385 Angelman syndrome, 8–9 Animal assisted therapy, 10 Animal models, 412–13 Annual goal, 12 Antecedent, 12, 112; behavior intervention, 423; fading, 136; functional behavior, 148–49; stimulus, 114–15 Antecedent–Behavior–Consequence (ABC) Analysis, 12 Antianxiety medication, 12 Antibiotics, 13 Antidepressant medications, 13 Antipsychotic medications, 13 Anxiety: children, 226–27; desensitization, 373; disorders, 13–14; generalized, 14; humor, 174; medication, 12 Anxiety disorders, 13–14 Aphasia, 118, 207–8 Applied behavior analysis (ABA), 15–19; behaviorism, 50; discrete trial training, 111; Fast ForWord Language, 141; gentle teaching, 157; life skills curricula, 214; play-oriented therapy, 260; pyramid approach to, 251; stimulus, 363; tact, 375; verbal behavior, 391–93 Apprentice, 290, 294 Appropriate education, 146–47, 211 Appropriate practice, 102 Approval, 105 Apraxia, 19 Archives of General Psychiatry (journal), 430 The Arc of the United States, 439 Arousal, 273, 316; cognitive assessment, 96; neurofeedback, 231–32 Art therapy, 19–20 Art Therapy Credentials Board (ATCB), 20 ASBI-R. See Analysis of Sensory Behavior Inventory–Revised Edition
INDEX ASCEND News (newsletter), 425 ASDS. See Asperger Syndrome Diagnostic Scale ASIEP-2. See Autism Screening Instrument for Educational Planning–Second Edition ASL. See American Sign Language The Aspen Newsletter, 426 Asperger, Hans, 20 Asperger’s Association of New England, 425 Asperger’s disorder, 20–23, 246, 247; restricted interest, 308 Asperger’s syndrome (AS), 20, 42; assessment, 23, 69, 70–71, 159–60, 205–6; Attention Deficit Hyperactivity Disorders, 27; brain cell development, 140–41; bullying, 55; high-functioning autism, 168–69; learning disorders, 209–10; nonverbal learning disability, 235; perseverative scripting, 245; personal perspective, 453–55, 457–59, 461–64, 466 Asperger Syndrome Alliance for Greater Philadelphia, 425 Asperger Syndrome and High Functioning Association E-List (newsletter), 426 Asperger Syndrome Diagnostic Scale (ASDS), 23 Asperger Syndrome Education Network, Inc., 425 Asperger Syndrome Screening Questionnaire (ASSQ), 23 ASQ: S/E. See Ages and Stages Questionnaires: Social/Emotional Assessment, 17, 24, 76; adaptive behavior, 2; alternative, 6; augmentative communication, 37; behavior function, 8; clinical, 74–75; criterion-referenced, 93; curriculum-based, 94; direct observation, 111; double interview, 116; education accommodation, 189–90; evaluation report, 127; family interview, 137; incidental teaching, 178–79; Individualized Education Plan, 182; Individualized Family Services Plan, 184; informal, 190; information gathering, 265; integrated play group model, 192–93; norm-referenced, 160, 236; probes, 280; sensory integration, 334, 335; situation attribution, 30; social skills, 352; standardization, 361; standardized tests, 362; state and district, 277; van Dijk approach, 390–91. See also Screening
Assessment for Effective Intervention (journal), 430 Assessment of Basic Language and Learning Skills (ABLLS), 24 Assimilation, 354–55 Assistance dogs, 10–11 Assistance scaffolding, 193 Assistive technology, 24–25; augmentative and alternative communication, 37; collaborative virtual environments, 398; device, 26, 32–36; Individualized Education Program, 182; service, 26; student legal rights, 189–90 Assistive technology device, 26 Assistive technology service, 26 Association for Advancement of Behavior Therapy, 440 Association for Behavioral and Cognitive Therapies, 440 Association for Behavior Analysis, 440 The Association for Persons with Severe Handicaps, 449 Association for Science in Autism Treatment, 440 Association loss and setback guideline, 161 Association method, 27 Association of University Centers on Disability, 440 ASSQ. See Asperger Syndrome Screening Questionnaire AT. See Assistive technology ATC Newsletter, 426 Attachment, 246; reactive, 299; social competence, 348; van Dijk approach, 390 Attention: information reception, 402; modeling component, 394; overselective/overfocused, 241; shifting, 203 Attention Deficit Hyperactivity Disorders (ADHD), 27–28, 322 Attitudinal change, 240 Attribute, picture exchange communication, 253 Attribution, 28–31; scale of social, 369; style, 73 Atypical autism, 247 Atypical behavior, 31 Audiologist, 31 Auditory Integration Training, 31–33 Auditory learners, 210 Auditory processing, 67–68, 300 Auditory system, 336
473
INDEX Augmentative and alternative communication, 33–39, 131–34, 251–54; visual strategy, 402 Aura, 325 Authorship, 133 Autism, 205; career planning, 59; childhood rating scale, 71; Fragile X syndrome, 146; genetic factors, 155–56; neuroscience-based perception, 140– 41; phenotype, 248; prevalence, 278; savant skills, 158–59; screening tool for two-year-olds, 321; seizure disorder, 325; social disorder, 60–61; strengths, 42; stress in late onset, 412; visceral disorder, 409–13. See also Autistic disorder; Cause of autism Autism: The International Journal of Research and Practice (journal), 430 Autism Advocate Magazine (newsletter), 426 Autism Asperger Publishing Co., 426 Autism-Asperger’s Digest (newsletter), 427 Autism Behavior Checklist (ABC), 39, 41 Autism Diagnostic Interview–Revised (ADI-R), 40, 347 Autism Diagnostic Observation Schedule (ADOS), 40 Autism International Network, 441 Autism Network for Dietary Intervention, 425 Autism Research Institute (ARI), 311, 426, 441 Autism Research Review International Newsletter (newsletter), 427 Autism Screening Instrument for Educational Planning–Second Edition (ASIEP-2), 41 Autism Screening Questionnaire. See Social communication Autism Society of America (ASA), 311, 426, 441 Autism Speaks, 441–42 Autism Spectrum Quarterly (newsletter), 427 Autism Treatment Center of America, 240 Autistic children, 205 Autistic disorder, 41–45, 42, 98, 168–69, 246–47; Asperger’s disorder, 20–22; atypical, 247; bullying, 54–55; Childhood Disintegrative Disorder, 72; Comprehensive Autism Program Planning System, 89–90; developmental delay, 99; diet, 107; environment, 124; hyperactivity spectrum, 27–28; joint action routines, 201; life skills curricula, 213–14; loss and grief, 160–61; mindblindness, 225; nutritional deficiency, 107–8;
474
nutritional supplements, 236; personal perspective, 465–66; physiological effect on treatment, 408; RDI program mission, 289–95; reactive attachment disorder, 299; red flags, 300; selective mutism, 326; sexuality, 219–20; social skills training, 352; spontaneous play, 360; syndrome, 373; visual learning strategies, 83–84; without mental retardation, 168–69. See also Asperger’s syndrome; Childhood disintegrative disorder; Pervasive developmental disorders; Rett’s disorder Autopsies, 343–44 Avatars, 397 Aversion to touch, 166 Aversive intervention, 156–57 Awareness, 334; body, 336; causes, 369; environment response, 104–5; neurofeedback, 231–32; self, 293–94; social, 235, 351 Ayres, A. Jean, 333, 335 Balance, 162–63, 336 Ballard, Keith, 180 Bandura, Albert, 394 BASC. See Behavior Assessment Scale for Children Baseline, 47 Beginning communicator, 36 Behavior, 42, 47, 50, 92, 95, 345–46, 402–3; adaptive, 1–2, 313, 333–34, 396–97; alternative, 61, 150; analysis, 8, 12, 376; antecedent, 12, 148–49, 423; assessment, 24, 40, 48, 49, 70, 123, 148, 149, 189–90, 265–66, 423; atypical, 31; challenging, 17–18, 152, 256, 306–7; cognitive approach, 77–80; communication and symbolic, 87–88; contract, 92–93; copingrelated, 119; developmental therapy, 104–6; discipline, 306; disorders, 98; establishing operation, 126; extinction, 129; function, 8, 92, 152; generalization, 114, 136, 155, 178, 218, 257, 284, 353, 354, 365, 395, 398; gentle teaching, 156–57; guided compliance, 163; high-functioning autism vs. Asperger syndrome, 169; history, 333; incident report, 179–80; interfering with school, 189–90; intervention, 50, 423; maladaptive, 50, 156–57, 219, 333; mapping of social,
INDEX 344–46; modeling, 16, 175, 193, 218, 332, 360, 394–96; music therapy, 228; obsession, 14; operant conditioning, 50, 231–32, 239; personal perspective, 468–69; pica, 250–51; play-oriented therapy, 259; private vs. public, 219–20; progress, 23; protodelcaration, 283–84; protoimperation, 284; psychobiology, 285; punishment, 286–87, 306; red flag, 300; rehearsal, 48, 165; repetitive, 63, 165, 241, 299, 300; ritualistic, 14, 192, 239–40, 261, 299; SCERTS model value, 314; schizophrenia, 319; self-determined, 328; self-injurious, 330; sensory, 8, 333–34; sensory profile, 337–38; sequence, 63, 100; services, 49; setting events, 338–39; stereotypic, 363; strategy, 339, 342–43; support, 264–71, 306–7; target, 109–10, 376; triggers, 149; visual tools, 401. See also Applied behavior analysis; Functional behavior analysis; Prompting; Reinforcement; Reinforcer; Stimulus Behavioral approach, 114, 201, 261, 326–27 Behavioral Assessment of the Dysexecutive Syndrome (BADS), 48 Behavioral framework, 239 Behavioral function analysis, 8, 114–15, 148 Behavioral objective, 48 Behavioral rehearsal, 48 Behavior analyst, 52–53 Behavior Analyst Certification Board (BACB), 49, 52 Behavior Assessment Scale for Children (BASC), 49 Behavior Health Rehabilitation Services (BHRS), 49 Behavior Intervention Plan, 50 Behaviorism, 50, 156–57 Behavior modification, 50, 342; cognitive, 77–80; verbal behavior, 391–93 Behavior principles, 50 Behavior therapist, 52 Belief, 29, 136–37 Bell, Nanci, 215 Belyakova, T. L., 110 Benchmark, 12 Berard, Guy, 31–32 Best practices, 127, 194–95 Bettelheim, Bruno, 51 BHRS. See Behavior Health Rehabilitation Services Bias, 51
Big picture, 173 Bilingual families, 326 Biofeedback, 51–52, 231–32 Biological needs, 420 BIP. See Behavior Intervention Plan Bipolar disorder, 225 Blackwell, Cameron, 457–59 Blackwell, Craig, 459 Blackwell, Eric, 451–53 Blackwell, Jamie, 459 Blackwell, Jen, 459–61 Bladder control, 123 Bleular, Eugen, 52 Blood tests, 176 Bluestone, Daniel, 171 Blumena, M. G., 110 Board Certified Associate Behavior Analyst (BCABA), 52–53 Board Certified Behavior Analyst (BCBA), 53 Board of Education of the Hendrick Hudson School District v. Rowley, 147 Body: awareness, 336; environment map, 334; language, 400 Bolles, Mary, 53 Bolles Sensory Integration, 53 Bovee, Jean Paul, 329 Bowel problems, 53–54 Brain, 331; activity, 121, 150; amygdala, 7–8; cells, 140; central auditory processing disorder, 67–68; developmental process, 234; dopamine, 115; executive function, 127; fusiform gyrus, 152; Halstead-Reitan Neuropsychological Test Battery, 165–66; head circumference, 167; imaging, 150, 217, 233; limbic system, 215; metallothionein, 223; neurotransmitter, 234; reorganization training, 140–41; seizure disorder, 325; sensory integration, 333–34; tic disorders, 379; visceral disturbance, 410–11; waves, 231–32 Brain damage, 222, 234, 411; assessment, 48, 165–66 Brain/gut peptide combinations, 408–13 Brain (journal), 430 British Journal of Developmental Psychology (journal), 431 The British Psychological Society, 431 Brushing, 54, 414 Bullying, 54–58 Calcium pengamate, 110 Capacities, SCERTS model, 315
475
INDEX CAPD. See Central auditory processing disorder Career Development of Exceptional Individuals (journal), 431 Career planning, 59–60 Caregiver: gentle teaching, 156–57; infant interactions, 411 CARS. See Childhood Autism Rating Scale Cartooning, 60–66 CAS. See Das-Naglieri Cognitive Assessment System Casein-free (diet), 66–67, 107, 108, 160 Case manager, 182 CASL. See Comprehensive Assessment of Spoken Language CASQ. See Children’s Attributional Style Questionnaire CAST. See Childhood Asperger Syndrome Test Catatonia, 67 CAT scan, 67 Cause-and-effect relationship: attribution, 29, 369; developmental therapy stage, 106; social situation, 343 Cause of autism: environment, 124; epidemiology, 125; fragile X syndrome, 146; genetics, 43; mercury, 222–23; mothering, 51, 311; pesticides, 248; thimerosal, 389; viruses, 399–400; visceral pathology, 410; zinc metabolism, 223 Causes of mental retardation, 222 CBA. See Curriculum-based assessment CBM. See Cognitive Behavior Modification CCT. See Children’s Category Test CDC. See Centers for Disease Control and Prevention CDD. See Childhood disintegrative disorder CDI. See Children’s Depression Inventory CEC. See Council for Exceptional Children CELF-P. See Clinical Evaluation of Language Fundamentals–Preschool Center for Autism & Related Disabilities, 427 Center for Inherited Disease Research (CIDR), 446 Center for the Study of Autism (CSA), 442 Centers for Disease Control and Prevention (CDC), 222, 300, 389, 442 Central auditory processing disorder (CAPD), 67–68 Central coherence, 68–69, 237 Certification: art therapist, 20; audiologist, 439; behavior analysis, 49; behavior analysts, 52–53; facilitator, 240;
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occupational therapist, 237; physical therapist, 249; sensory integration, 334–35; speech language pathologist, 358, 439 Chaining, 69; applied behavior analysis, 16; picture exchange communication, 253; task analysis, 376 Challenging behavior, 17–18; function, 152; motivation, 256; respite care worker, 306–7 CHAT. See Checklist for Autism in Toddlers Checklist for Autism in Toddlers (CHAT), 69 Checklist for Occupational Therapy, 70 Checklist work systems, 368 Chelation, 70, 167 Chemical messengers, 234 Chewing, 311 Child Behavior Checklist for Ages 11=2 to 5, 70 Child-centered approaches, 260 Child development, 243–44; delay, 98; milestones, 99–101, 103; pronoun errors, 283; retrospective video analysis, 308; SCERTS model, 313–18 Childhood Asperger Syndrome Test (CAST), 70–71 Childhood Autism Rating Scale (CARS), 71 Childhood disintegrative disorder, 72–73, 99, 246, 247 Childhood disorders, 98 Children: anxiety, 13–14, 226–27; apprentice, 290; appropriate education, 146–47; assessment, 49, 70–71, 73, 74, 365–68, 378, 408; bowel problems, 53; brain development, 140–41; central auditory processing disorder, 68; Cognitive Behavior Modification, 79–80; developmental age, 97–98; developmental quotient, 103; dynamic learning, 292; engagement, 123; Fragile X syndrome, 145; guided participation, 294; hand regard, 166; intersubjective deficit, 294; LandauKleffner syndrome, 207–8; loss and grief, 160–61; maternally deprived, 408–9; mother, 51, 259, 289, 311; motivation, 256; nocturnal enuresis, 123; perceptual needs, 140; performance concerns, 29; pervasive developmental disorder, 246; posttraumatic stress disorder, 273; sensory motor activities, 331–32; social contacts, 74–75; social play, 349; wait training, 407
INDEX Children’s Attributional Style Questionnaire (CASQ), 73 Children’s Category Test (CCT), 73 Children’s Defense Fund (CDF), 442 Children’s Depression Inventory (CDI), 74 Children’s Health Act of 2000, 444, 449 Choice boards, 401 Choice simulation, 342–43 Chromosome 15, 9 Chronological age, 74 Circle of Friends, 74–75 Civil rights, 6–7; Rehabilitation Act of 1973, 301; Section 504 protection, 322 Civil Rights Act of 1964, 6 Clarity, visual, 368 Classmates, 74 Classroom: activities, 2; assistive technology, 25; inclusion, 180; layout, 366; least restrictive environment, 210–11; life skill teaching, 214; mainstreaming, 217–18; personal perspective, 466; self-contained, 327; visual tools, 401. See also General education classroom Classroom Reading Inventory (CRI), 75 Class-within-a-class, 212 Client Assistance Program, 187 Clinical assessment: educational, 75; medical, 75 Clinical Evaluation of Language Fundamentals–Preschool, 76 Clinical method engineering, 289 Clinical opinion, 76 Clinical practice guidelines, 76 Clinical significance, 76 Clinical social worker, 76–77 Clinical trial, 77 Closing the Gap, 442–43 Clostridium tetani, 77 Coaching, 290 Code, 356 Cognitive ability: Das-Naglieri assessment system, 96; differential ability scales, 108–9; functional limitations, 150; Leiter International Performance Scale, 213; splinter skills, 360; Stanford-Binet intelligence scales, 362; voting, 405; Wechsler Intelligence Scales for Children, 408; WoodcockJohnson Psychoeducational Battery, 414 Cognitive Behavior Modification, 77–81 Cognitive behavior therapy, 327 Cognitive deficits, 143 Cognitive functioning, 333–34 Cognitive impairment, 42
Cognitive learning strategies, 81–86 Cognitive picture rehearsal, 63 Cognitive processes, 86 Cognitive skills: executive function, 127–28; mental retardation, 221–22 Coherence, 68, 237 Collaboration: priming strategy, 279; studentteacher, 424; Ziggurat Model, 424 Collaborative Programs for Excellence in Autism, 443 Collaborative team, 86 Collaborative virtual environments (CVEs), 397–98 Collaborator, 314–16 College, 404; personal perspective, 467–68 Comic strip conversations. See Cartooning Communication, 42, 47, 143–44, 152, 267, 300; acquired skill evaluation, 126–27; alternative and augmentative, 9; Asperger’s disorder, 21; augmentative and alternative, 33–38; board, 88; book, 252; cartooning, 61; collaborative virtual environments, 398; comprehension, 174; developmental milestone, 100; developmental therapy, 104–6; diagnostic, 40; dog-child relationship, 10; dynamic intelligence, 291; echolalia, 120; experience sharing, 293; facilitated, 131–34; integrated play group model, 192–93; intent protodeclaration, 283; music therapy, 228; partner, 252; picture exchange system, 251–54; play initiation monitoring, 193; preschool disorders, 76; priming, 279; prosody, 283; regression, 309–10; SCERTS model, 314; social, 347; social thinking, 357; Son-Rise Program, 240; speech therapy, 359; support device selection, 36; symbolic, 36, 87–88, 278, 372–73; teaching, 365–68; total, 381; twenty questions, 386; van Dijk approach, 390; visual strategies, 400, 402 Communication and Symbolic Behavior Scales (CSBS), 86–87 Communication and Symbolic Behavior Scales Developmental Profiles (CSBS DP), 87 Communication-based interaction, 201 Communication board, 87–88 Communication skill: joint action routines, 203; pervasive developmental disorder not otherwise specified, 247; pivotal response training, 255; social scripts, 349–50
477
INDEX Community-based employment, 191, 370, 404 Community-based residential programs, 302 Community experience, 59 Community setting, 15 Co-morbid/co-occurring, 88, 169 Comparison group, 93 Competence, 290; communicative, 88; dynamic intelligence, 292; language test, 376–77; parents, 294–95; social, 106, 348, 357; voting, 405 Comprehension: communicative, 174; symbols, 34–35 Comprehensive Assessment of Spoken Language, 88 Comprehensive Autism Program Planning System (CAPS), 88–90 Compulsive behavior, 250–51 Computer-based learning, 397–99 Conceptual processing, 174 Concerta, 363 Concrete language, 90 Concurrent validity, 90 Conditioning: learned helplessness, 208–9; operant, 50, 231–32, 239; respondent, 307 Conduct disorder, 27–28, 28 Confidence. See Self-confidence Confidentiality, 90–91 Conflict, 61 Confusion, visual and verbal, 368 Connective tissues, 145 Consent, 91; family services plan, 183, 185; individual employment plan, 186–87; special education, 182 Consequence, 91; behavioral, 148, 152, 345–46; discrete trial, 16, 113; guided compliance, 163; social situation strategies, 342–43 Constipation, 53, 91, 123 Consultation, 238–39 Consumer of services, 186–87 Content maps, 162 Contingency, 92 Contingency contracting, 92 Control condition, 92 Control group/control condition, 92 Conversation, 61–63 Coordination of movement, 162–63 Coping: bullying, 55–56; developmental milestone, 100, 101; environmental stressors, 125; inventory of early, 119; personal perspective, 463 Correction, 125; discrete trials, 112; no-no prompt, 234; overcorrection, 17, 241; picture discrimination, 252
478
Correctional facility, 92 Cost, 187, 307; assistive technology devices, 26; hippotherapy, 171; independent evaluation, 323 Council for Exceptional Children (CEC), 430, 431, 443 Counseling support, 4 Counselor, 186–87, 221, 404 Creative thinking, 292 CRI. See Classroom Reading Inventory Crisis intervention, 4 Criterion-referenced assessment, 92–93 CSBS. See Communication and Symbolic Behavior Scales Cue, 255; stimulus control, 364; Storymovie, 364–65; visual, 366, 395, 400 Culture of autism, 44 Cure, 43 Cure Autism Now (CAN), 443 Curriculum, 93; Assessment of Basic Language and Learning Skills, 24; association method, 27; developmental play assessment, 103; early childhood sensorimotor, 331–32; hidden, 167–68; life skills, 213; self-determination, 328; Storymovie, 365; van Dijk approach, 390–91 Curriculum-based assessment, 93 CVEs. See Collaborative virtual environments Cytomegalovirus, 399 Daily living, 397–98; activities, 1; early childhood, 331; Individualized Family Services Plan, 184; milieu teaching, 223–24; self-determination, 329; Storymovie, 365 Daily living skills, 2, 95, 202; developmental therapy stage, 106; functional, 151; self-help, 330 Dairy products, 207 Dance therapist, 96 Dance therapy, 95–96 DAN! Protocol (newsletter), 427 DARD. See Durrell Analysis of Reading Difficulty DAS. See Differential Ability Scales Das-Naglieri Cognitive Assessment System (CAS), 96 Data, 96–97; applied behavior analysis, 15; baseline, 47; collection, 202, 271; incidental teaching assessment, 178–79 Daydreaming, 232 Day habilitation services, 4
INDEX Deaf-blind individuals, 390–91 Deaf individuals, 381 Decision-making method, precision teaching, 275 Decisions, task high level, 83 Deep pressure proprioception touch technique, 97 Defeat Autism Now! (DAN!), 427 Defensiveness, 375 Deficiency strategy production, 82 Deficit: adaptive behavior, 2, 222; Asperger’s syndrome, 28–29; cognitive, 143; communication, 402, 421; executive function, 127–28; face recognition, 131; motor activity, 67; nonverbal learning, 234–35; perspective taking, 28–29; pervasive development disorder, 246–47; prosody, 207–8; RDI program, 291–95; sensory, 220; skill, 136, 238; social, 55, 349, 352–54, 378; social-cognitive, 173 Deliberate, SODA strategy, 83–86 Delusions, 319 Dementia infantalis. See Childhood disintegrative disorder Denton, David, 381 Department of Education, 137, 138, 322, 444, 447–48, 449 Department of Health and Human Services, 450 Dependent variable response, 47 Depression, 29, 74, 209, 225 DES. See Dysexecutive Syndrome Desensitization, 97, 176, 373, 381 Design: experimental, 128; integrated play group, 191–92; intervention, 423–24 Desired behavior: habit rehearsal, 165; target behavior, 109–10, 376 Determinism, 328 Detoxification, 97, 117; chelation, 70, 167 Development: Rett’s disorder, 309; visceral diseases, 410 Developmental age, 97–98 Developmental delay, 98 Developmental dimensions, SCERTS model, 315 Developmental disability, 41 Developmental disorder, 98–99; Attention Deficit Hyperactivity Disorders, 27–28; language, 140–41 Developmental framework, play-oriented therapy, 260–61 Developmental history, 40
Developmental Individual-Difference Relation-Based Intervention (DIR), 99–102 Developmentally appropriate practice, 102 Developmental milestones, 100–101, 103 Developmental Play Assessment Instrument (DPA), 103 Developmental process patterning, 243 Developmental profiles, Communication and Symbolic Behavior Scales, 87–88 Developmental progress, 289 Developmental quotient, 103, 163 Developmental sequence, sensory integration, 333–34 Developmental stage, symbolic thought, 372 Developmental surveillance, 103–4 Developmental therapy, 104–6 Development model, appropriate practice, 102 Device: assistive technology, 26; augmentative and alternative communication, 34–35; selection of, 35–36 Diagnosis: adaptive behavior, 2; Asperger’s disorder, 20–21; Attention Deficit Hyperactivity Disorder, 28; autistic disorder without mental retardation, 168–69; brain injury, 243; childhood autism, 71; conduct disorder, 28; developmental disorders, 98; differential, 109; generalized anxiety disorder, 14; International Statistical Classification of Diseases, 197; interview, 40; mental disorders, 106; mental retardation, 221–22; nonverbal learning disability, 235; observation schedule, 40; oppositional defiant disorder, 28; pervasive developmental disorder not otherwise specified, 246–47; Psychoeducational ProfileThird Edition, 285; reactive attachment disorder, 299; Rett’s disorder, 309, 310–11; screening, 321; selective mutism, 326; social phobia, 13; symptom, 373; tic disorders, 379 Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revised (DSM-IV-TR), 13, 21, 28, 41, 72, 98, 106–7, 160–69, 209, 225, 247, 250, 272, 299, 309, 310, 326, 379 Diagnostique (journal), 430 Diet, 107; casein-free, 66; dysbiosis, 117; Fiengold, 142; food sensitivities, 122; gluten-free, 67, 160; lactose intolerance, 207; nutritional supplements, 236
479
INDEX Diet therapy, 107–8 Differential Ability Scales, 108–9 Differential diagnosis, 109 Differential reinforcement, 109–10 Digestive peptides, 244 Dimension: developmental, 315; social, 192, 361; symbolic, 192, 360 Dimethylglycine (DMG), 108, 110 DIR. See Developmental Individual-Difference Relation-Based Intervention Direct instruction, 110–11 Directions, 68 Directive no-no prompt procedures, 234 Direct observation, 111; Autism Behavior Checklist, 39; behavioral function analysis, 8 Direct services, 238 Disability, 111; assistive technology, 25; brain damage, 243; definition, 7, 322; normalization, 235; supported employment, 370 Discipline, 306 Discrete trial teaching (DTT), 16 Discrete trial training: brief definition, 111; extended definition, 111–14; massed practice, 219; play-oriented therapy, 260; target behavior, 376 Discretion, appropriate education, 147 Discrimination, 114; Americans with Disabilities Act, 6–7; Section 504 protection, 322 Discriminative stimulus, 112, 114–15; no-no prompt procedures, 234; trial, 385 Disintegrative psychosis. See Childhood disintegrative disorder Disorder: dysphasia, 118; groupings, 98; mood, 225–26; tic, 379 Distributed practice, 115 Division of Developmental Disabilities, 222 Division of Early Childhood Education (DEC), 98 Division of Vocational Rehabilitation (VR), 370, 404 DMG. See Dimethylglycine Dog placement, 10 Domains: assessment, 24, 321; autistic disorder impact, 41; brain reorganization, 140; developmental, 97, 103, 247, 314; dynamic intelligence, 292–94; goal setting, 383; social, 259 Doman-Delacato treatment, 243–44 Dopamine, 115, 379 Double blind, 115–16 Double interview, 116–17
480
DPA. See Developmental Play Assessment Instrument DQ. See Developmental quotient Drug abuse, 305 Drugs. See Medication DSM-IV-TR. See Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revised DT. See Developmental therapy DTT. See Discrete trial teaching Due process, 117 Dunn’s Model of Sensory Processing, 3 Durrell Analysis of Reading Difficulty (DARD), 117 Dynamic intelligence, 291–94 Dysbiosis, 117 Dyscalculia, 209 Dysexecutive Syndrome (DES), 48 Dysfunction: sensory integration, 335–36; sensory processing, 337 Dysgraphia, 209 Dyslexia, 209 Dysphasia, 118 Dyspraxia, 132–33 Ear, 67–68, 393 Early childhood: assessment, 87–88, 119; developmental delay, 98; reactive attachment disorder, 299; sensory motor activities, 331–32 Early Coping Inventory, 119 Early intensive behavioral intervention (EIBI), 18 Early intervention, 119–20 EASIC-R. See Evaluating Acquired Skills in Communication–Revised Echoic/verbal behavior, 120, 392 Echolalia, 67, 120, 245, 283 ECI. See Early Coping Inventory Ecological inventory, 120 Education, 96; appropriate, 146–47, 324; curriculum accommodation, 1; evidence based approach, 127; inclusiveness, 180; laws, 450; opportunities, 419; postsecondary, 272; pyramid approach, 251; RDI program, 290; records, 137–39; reform, 234; speech language pathologist, 358; structure teaching, 365–68. See also School; Special education Educational approach, SCERTS model, 313–18 Educational assessment, 75 Educational bulling, 54
INDEX Educational performance: annual goal, 12; present level, 275–77 Educational placement, 121, 147–48, 236, 324; least restrictive environment, 210–12; mainstreaming, 217–18 Educational practices, daily interventions, 366 Educational services, correctional facility, 93 Education and Training in Developmental Disabilities (journal), 431 Education of All Handicapped Children Act, 419 Educators, 217–18 EEG. See Electroencephalogram EEG biofeedback. See Neurofeedback Effectiveness: establishing operation, 126; RDI methods development, 289–95; treatment, 385 Efficacy, 76–77 EFT. See Embedded Figures Test EIBI. See Early intensive behavioral intervention Eisenberg, Leon, 121 Electoral participation, 405 Electroencephalogram, 121, 232 Eligibility, 121; extended school year, 128; Individualized Education Plan, 121; Individualized Family Service Plan, 184; special education, 227; Supplemental Security Income, 370; vocational rehabilitation, 186–87, 323, 404 Elimination diet and food sensitivities, 122 Embedded Figures Test (EFT), 122 Embedded skills, 122 Emergency Care Plan, 185 Emotion: care giver stability, 305; limbic system, 215; play-oriented therapy, 259; regulation, 314, 316; respite care worker, 305; response desensitization, 97 Emotional development, 5 Emotional disability, 405 Emotional disorders, 98, 124; assessment, 49 Emotional ideas, 101 Emotional support, 123 Emotional thinking, 101 Empiricism, 123 Employment: Americans with Disabilities Act, 7; career planning, 59–60; facilitybased, 135–36; independent, 180–81; individual plan, 186–87; integrated, 191; present level of educational performance, 277; reasonable accommodation, 324; respite care,
303–7; supported, 370; transition planning, 383; vocational rehabilitation, 404 Employment agency, 191 Employment services, consumer rights, 186–87 Employment supports, transition to adulthood, 4 Empowerment, RDI program, 289 Encopresis, 123 Engagement, 123 Enuresis, 123 Environment, 124–25; adaptive behavior, 1–2; Cognitive Behavior Modification, 78; dual sensory loss, 390–91; dynamic intelligence, 291–92; ecological inventory, 120; establishing operation, 126; generalization, 155; integrated play group, 192; map, 334; motivation, 392; physical organization, 366; pivotal response training, 255; response, 104–5; sensory processing, 337; setting events, 338–39; social behavior mapping, 345; Son-Rise Program, 240; stimulus, 363; virtual, 397–99 Environmental changes, 9 Environmental factors, 43 Environmental stressors, 125 Environmental task demands, neurofeedback, 232 Epidemiology, 125 Epilepsy, 207–8, 325 Episodic memory, 293–94 Equinus gait, 380 Error correction, 125; no-no prompt procedures, 234; overcorrection, 17, 241; picture discrimination, 252 Errorless teaching, 112, 392 Escape behavior, 163 Escape training, 126 Establishing operation, 126, 391 ESY. See Extended School Year Ethics, 44, 196 Evaluating Acquired Skills in Communication–Revised (EASIC-R), 126–27 Evaluation: multidisciplinary, 227; positive behavior support, 271; problem behavior, 269; report, 127; screening, 321; Section 504 qualification, 323; strategy, 82–83 Evaluation report, 127 Evaluator, 390 Event sequence, 402–3
481
INDEX Event setting, 338–39 Evidence, 123, 243–44, 376 Evidence based, 127, 423 Excitement, 67 Executive dysfunction, 83 Executive functions, 127–28; Asperger’s disorder, 22; test, 48, 382, 414 Exercise patterning, 243 Expectation: independence, 366; social behavior mapping, 345; work systems, 367–68 Expected behavior, 345–46 Experience sharing, 293 Experience-sharing relationship, social competence, 348 Experimental analysis, 47 Experimental design, 93, 115, 128 Expertise, fusiform gyrus, 152 Expert players, 192 Expressive abilities, loss, 207 Expressive language, 128 Extended care support, 4 Extended School Year (ESY), 128–29 External demands, 232 Extinction, 129 Eye-contact, 129, 246, 408; social thinking, 143, 357 Eye gaze, 129, 300, 349 Face recognition, 131 Facial expression, 300 Facilitated communication (FC), 37, 131–35 Facilitator, 132, 133, 341 Facility-based employment, 135–36 Fading, 113, 136 False-Belief Paradigm, 136–37 Families for Early Autism Treatment (FEAT), 427 Family: bilingual, 326; empowerment, 289; incidental teaching, 178; Individualized Family Service Plan, 183–85; Option Institute, 240; personal perspective, 452–53, 464–65; residential support need, 302; SCERTS model value, 314; services individualized plan, 183–85; speech therapy, 360; support meetings, 340– 41; supports, 4; transition planning, 384; vision statement, 183 Family assessment interview, 137 Family Education Rights and Privacy Act (FERPA), 137–39 Family for Early Treatment of Autism (FEAT), 444
482
Family Policy Compliance Office, Department of Education, 138 FAST. See Functional Analysis Screening Tool Fast ForWord, 139–42 FASTimes (newsletter), 427 Father, 289; personal perspective, 451–53 Faux pas. See Social faux pas FBA. See Functional behavior assessment Fear, 13, 326, 373 FEAT. See Families for Early Autism Treatment F.E.A.T. Daily Autism Newsletter, 427 Feature-based strategy, 131 Febrile seizures, 325 Federal funding, 6, 137, 322 Federal programs, 405 Feedback: equipment, 51–52; neurological, 231–32; sensory integration, 333 Feeling, 161, 373 Feingold, Benjamin, 142 Feingold diet, 107, 142 Females, 43, 122, 319 Fetal alcohol syndrome, 222 Figurative language, 142 Figurative speech, 169 Figure, embedded, 122 Films, 133 Financial assistance, 322 Financial supports, 5 Fine motor skills, 142 Flexibility, 292 Flight, 11 Floor time, 99; Developmental IndividualDifference Relation-Based Intervention, 142; play oriented therapy, 261 Florida Asperger Syndrome Times (FASTimes) (newsletter), 427 Fluency, 142, 308 fMRI. See Functional magnetic resonance imaging (fMRI) Focus on Autism and Other Developmental Disabilities (journal), 431 Food, 107–8; amino acids, 7; gluten, 160; rumination syndrome, 311. See also Diet Food and Drug Administration (FDA), 32, 110, 389, 450 Food sensitivities, 122 Four steps of communication, 143–44 Four steps of perspective taking, 144–45 Fragile X syndrome, 145–46 Free and appropriate public education (FAPE), 146–48
INDEX Friends, 74 Friendships, 21; personal perspective, 453–55 Frontal lobe syndrome, 48 Frustration, 21, 61, 207–8 Functional Analysis Screening Tool (FAST), 148 Functional behavior analysis, 148–49 Functional behavior assessment (FBA), 149, 189, 265, 423 Functional communication training (FCT), 36 Functional goals, 149–50 Functional limitations, 150 Functionally equivalent alternative behavior, 150 Functional magnetic resonance imaging (fMRI), 150–51 Functional outcomes, 151 Functional protest training, 151 Functional skills, 151 Functions of behavior, 152 Functions of communication, 152 Funding, 5; facilities-based employment, 136; federal, 6, 137, 322; rehabilitation, 322, 404; self-determination, 329 Fusiform face area (FFA), 131 Fusiform gyrus, 152–53 GAD. See Generalized anxiety disorder GADS. See Gilliam Asperger Disorder Scale Gait, 170, 380 Games, 232, 397 GARS. See Gilliam Autism Rating Scale Gastrointestinal tract symptoms, autistic and maternally deprived, 408–9 Gaze, 129, 300, 349 GCA. See General Conceptual Ability General case programming, 155 General Conceptual Ability (GCA), 108–9 General education classroom: least restrictive environment placement, 210–12; mainstreaming, 217–18; organization, 366; participation, 276; Section 504 services, 324 Generalization, 155; demonstration, 365; discrete trial training, 114; fading, 136; group therapy, 360; incidental teaching, 178; maintenance, 218; peer mentoring, 353; prototype formation, 284; question initiation, 257; social skill programs, 354; strategy, 155; video modeling, 394; virtual environments, 398 Generalized anxiety disorder (GAD), 14
Genetic disorder: Angelman syndrome, 8–9; Fragile X syndrome, 145–46; Rett’s disorder, 309; tuberous sclerosis complex, 385–86 Genetic factors/heredity, 155–56 Genetics: causes of autism, 124, 155; motherinfant interaction, 412–13; twin studies, 386 Genotype, 156 Gentle teaching (GT), 156–58 Gestalt processing, 174 Giftedness, 158–59 Gilliam Asperger Disorder Scale (GADS), 159–60 Gilliam Autism Rating Scale (GARS), 160 Girls, 309 Gluten-free (diet), 67, 107, 108, 160 Goal: annual, 12; extended school year, 128; functional, 149–50, 151; Individualized Education Program, 182; Individualized Family Services Plan, 184; Individualized Transition Plan, 188–89; Individual Plan for Employment, 187; instruction, 111; intervention, 265; SCERTS model, 315; social, 371–72; survive and thrive, 371–72; therapeutic, 11; transition, 383–84; vocational, 187 Goal-directed activities, 316–17 Goldfield, Kate, 461–64, 467–68 Good grief, 160–61 Graduated guidance, 161–62 Grandin, Temple, 44, 172, 400 Graphic organizer, 162 Gravitational insecurity, 162–63 Greenspan, Stanley, 99 Grief, 160 Gross motor developmental quotient, 163 Gross motor skills, 163 Group: age, 202; homes, 302; instruction, 17; play, 191–95; socialization, 105–6; support, 339–41; therapy, 360 Guidance, social-communication, 193–94 Guided compliance, 163; physical guidance, 163 Guides: parent competence, 294–95; RDI program, 290 Gustatory system, 336 Gut, 208 Habit rehearsal, 165 Hair analysis, 165 Hallucinations, schizophrenia, 319
483
INDEX Halstead-Reitan Neuropsychological Test Battery (HRPTB), 165–66 Hand-over-hand assistance (HOH), 166 Hand regard, 166 ‘‘Happy puppet’’ syndrome. See Angelman syndrome Head circumference, 166–67 Head position, 393 Health information, 183 Health services, Individualized Health Care Plan, 185–86 Hearing, 31 Hearing impaired individuals, total communication, 381 Heart rate, 51 Heavy metals, 70, 167; autism, 124 Heller’s syndrome. See Childhood disintegrative disorder Help American Vote Act, 405–6 Helplessness, 208–9; prompt dependence, 281 Heredity, 155–56; genetic factors, 155–56 Hidden curriculum, 167–68, 169 Hidden supports, video feed-forward, 396 High-functioning autism, 42, 168–70; Asperger’s disorder, 21, 23 High-risk individuals, 321 High school, 55–56, 404–5 Hippocampus, 170 Hippotherapy, 170–71 Hiring, respite care workers, 304–5 Holcomb, Roy, 381 Holding therapy. See Welch Method Therapy Home, 43–44 Home-based programs, Son-Rise Program, 240 Homebound/hospital bound program, 171–72 Home care, 303–7 Hormone, 108 Hormone replacement, 172 Horses, 170 Hospital bound program, 171–72 Housing, 405; residential supports, 302 HRPTB. See Halstead-Reitan Neuropsychological Test Battery (HRPTB) Hug machine, 172. See also Proprioception Human Subjects Review Committee, 196 Humor, 174 Hyperactive children: Angelman syndrome, 9; Cognitive Behavior Modification, 79; diet, 142 Hyperactivity, 67, 142 Hyperactivity disorders, 27–28 Hyperlexia, 172 Hyperresponsiveness, 172 Hypersensitivity, 375, 393
484
Hypnotics, 12 Hyporesponsiveness, 172 Hypothesis, positive behavior support, 266–67 ICD. See International Statistical Classification of Diseases and Related Health Problems IDEA. See Individuals with Disabilities Education Act Ideas, 101 Ideology, 51 Idiosyncratic language, 173 IEP. See Individualized Education Program IFSP. See Individualized Family Service Plan IHCP. See Individualized Health Care Plan I LAUGH model of social cognition, 173–75 Images, 142 Imagination, 175 Imaging, 67, 150, 217, 272 Imitation/modeling, 175–76; echoic, 392; echoic behavior, 120; motor, 226 Immersion environment, 397 Immune system, 176; allergy, 5; autism, 124 Immunoglobulin, 176 Immunological tests, 176 Immunotherapy, 176 Impairment, 176 Implementation steps, incidental teaching, 177–79 Incidence, 176–77; mental retardation, 222; Rett’s disorder, 309 Incidental teaching, 16–17, 177–79, 224 Incident report, 179–80 Inclusion, 180; least restrictive environment, 211–12; mainstreaming, 217–18 Income, Supplemental Security, 370 Independence: assistive technology, 25; Cognitive Behavior Modification, 77–80; daily living, 1; daily living skills, 95; expectations, 366; functional goals, 149–50; functional outcomes, 151; learned helplessness, 209; life skills curricula, 214; prompting, 281; residential supports, 302; teaching, 80 Independent behavior, scales, 313 Independent employment, 180–81 Independent evaluation, Section 504, 323 Independent functioning skills, 113 Independent living: present level of educational performance, 277; selfdetermination, 328–29; transition planning, 382–84
INDEX Independent thinking, developmental individual-difference relation-based intervention, 99 Indicators of Sensory Processing Disorder, 181 Individuality, 180 Individualization, SCERTS model, 317–18 Individualized Education Program (IEP), 181–83, 189–90; accommodation, 1; annual goal, 12; Assessment of Basic Language and Learning Skills, 24; assistive technology, 25, 26; circle of friends, 75; correctional facility, 93; eligibility, 121; extended school year, 128; general education classroom, 210–11; language competence, 376–77; life skills, 213; mainstreaming, 217–18; music therapy, 227; personal perspective, 452, 455–57; placement, 121, 147, 236, 324; present level of educational performance, 275–77; resource room, 303; transition plan, 188 Individualized Family Service Plan (IFSP), 4, 88, 183–85 Individualized Health Care Plan (IHCP), 185–86 Individualized interventions, applied behavior analysis, 17 Individualized planning, 89 Individualized program, free appropriate education, 147 Individualized Transition Plan (ITP), 186–87 Individual Plan for Employment (IPE), 187–89 Individuals with Disabilities Education Act (IDEA), 41, 59, 91, 128, 137, 146–47, 181–82, 184, 188, 189–90, 209, 210, 217, 221, 222, 227, 322, 323, 382–84, 419, 448 Infant, 284; development early coping inventory, 119; dynamic encounters, 292; head circumference, 167; joint attention, 203–4; pervasive developmental disorder, 246; protodeclaration, 283–84; reactive attachment disorder, 299; sensory profile, 190; stress adaptation response, 410–12 Infantile autism, 205 Infant/Toddler Sensory Profile, 190 Inference, 51 Inferential language, 174 Inflammatory symptoms, stress-induced, 410 Informal assessment, 190
Information: assessment, 24; case study, 402–3; consent to the exchange of, 91; data, 97; double interview, 116; gathering, 265–66; intersubjective relationship, 294; mindblindness, 225; present level of educational performance, 276; prototype formation, 284; school records disclosure, 137–39; sensory processing, 337; social stories, 355–56; tactile, 375; visual structure, 368–69; visual support, 401 Information processing: central coherence, 68; cognitive learning strategy, 83 Initiation, monitoring play, 193 Initiation of questions, generalized skill, 257 Injury, 330; incident report, 179–80 Inner ear, 393 Insecure attachments, 299 Institute of Education Services (IES), 444 The Institutes for the Achievement of Human Potential (IAHP), 243 Institutions, 43 Instruction: Applied Behavioral Analysis, 18; direct, 110–11; learning strategies, 82–84; social skill, 398; systematic, 2; trial, 385; van Dijk curricula, 390–91; visual clarity, 369 Instructional goal, next step, 2 Instructional sequence, Cognitive Behavior Modification, 80 Instructional steps, 112 Instructional techniques: accommodations, 1; learning styles, 210; visual, 421 Instrumental social learning, social competence, 348 Insurance coverage, 5, 171 Integrated employment, 191 Integrated Play Group Model (IPG), 191–96 Intellectual development, 221 Intelligence: Das-Naglieri assessment system, 96; dynamic and static, 291–92; learning disorder, 209; Stanford-Binet scales, 362; universal nonverbal test of, 387 Intelligence Quotient (IQ), 196 Intelligence tests, 196, 408; mental age, 221 Intensity, loss and grief, 160–61 Intent, communicative protodeclaration, 283 Interaction: developmental milestones, 100; reciprocal communication, 300 Interagency Autism Coordinating Committee (IACC), 444 Interdependence, gentle teaching, 156–57
485
INDEX Interest, restricted, 308 Interest in the world: autism red flag, 300; developmental milestones, 100 Interests, Asperger’s disorder special, 21–22 Internal conditions, behavior, 47 Internal demands, 232 Internal interval, 113 Internal Review Board (IRB), 196 International Human Genome Project 446 International Rett Syndrome Association (IRSA), 445 International Statistical Classification of Diseases and Related Health Problems (ICD), 197 Interobserver agreement/reliability, 197 Interpretation, 174; communication, 194 Intersubjective relationship (IR), 294 Intervention: auditory integration training, 31–33; clinical significance, 76; design process, 423–24; developmental delay, 98; Doman-Delacato Treatment, 243–44; early, 119; early intensive behavioral, 18; Fast ForWord, 139–41; framework, 99; goals of, 265; individualized planning, 89–90; integrated play group, 193; music therapy, 227; neuroscience based, 140–41; peptide treatment, 408–9; picture exchange communication, 254; pivotal response training, 255; priming strategy, 279–80; RDI program development, 289; self-management, 256–57; sensory integration, 334; stimulus, 363; video modeling, 394; video self-modeling, 395 Intervention in School and Clinic (journal), 432 Intervention plans, social skills training, 353 Interventions: behavior modification, 50; dietary, 107; occupational therapy, 238–39; play-oriented therapies, 259–62; problem behavior prevention, 267; Ziggurat Model, 419–24 Intervention strategies: accommodation and assimilation, 354–55; applied behavior analysis, 15–16 Intervention strategy, joint action routines, 201–3 Intervention Ziggurat, 420–21 Interview: diagnostic, 40; double, 116; family assessment, 137; respite care workers, 305 Intestinal tract, leaky gut syndrome, 208 Intestinal tract dysbiosis, 117 Intimacy, developmental milestones, 100
486
Intraverbal, 197, 392–93 Investigational device, auditory integration training, 32–33 IPE. See Individual Plan for Employment IQ, 41–42, 196; scores, 408 IR. See Intersubjective relationship Irlen lenses, 197–99 ITP. See Individualized Transition Plan JAR. See Joint action routines Jaundice, 222 Jig, 369 Job coach, 370 Job placement services, 404 Jobs, 180–81, 191; respite care worker, 303–4 Joint action routines, 201–3 Joint attention, 203–4, 283, 349 Journal, 204 Journal of Applied Behavioral Analysis, 432 Journal of Autism and Developmental Disorders, 431 Journal of Child Psychology and Psychiatry and Allied Disciplines, 432 Journal of Neuropsychiatry and Clinical Neurosciences, 433 Journal of Positive Behavior Interventions, 433 Journal of Speech Hearing Language Research, 433 Journal of the American Medical Association, 433 Journal of the International Neuropsychological Society, 433–34 Juvenile offenders, 93 KADI. See Krug’s Asperger’s Disorder Index Kanner, Leo, 43, 121, 205 Kaufman, Barry Neil, 239–40 Kaufman, Samahria Lyle, 239–40 Ketogeic diet, 107 Kinesthetic/tactile learners, 210 Knowledge, empiricism, 123 Krug’s Asperger’s Disorder Index, 205–6 Labeling, 375 Lactose intolerance, 207 Landau-Kleffner syndrome, 207–8 Language, 41, 253; abstract inferential, 174; American sign, 6; Asperger’s disorder, 20–21; assessment, 76, 89; body, 400; cartooning, 65–66; competence test, 376–77; concrete, 91; development test, 377; double interview assessment, 116; echolalia, 67, 120, 245, 283; expressive, 128; figurative, 142; fluency
INDEX disorder, 142; high-functioning autism, 169; idiosyncratic, 173; invitation, 174; milieu teaching, 223–24; personal perspective, 463; person first, 245–46; pragmatics test, 377; receptive, 300; receptive deficits, 402; social thinking skills, 143–44; total communication, 381; utterance mean length, 220–21; verbal behavior, 391–93 Language acquisition: American Sign Language, 6; evaluation, 126–27; natural language paradigm, 231 Language development: experience sharing, 293; Picture Exchange Communication System, 251–52 Language disorders, 358 Language intervention paradigm, 231 Language skills, 359 Language training, 393 Latency of response, 308 LaVoie, Richard, 343 Law: due process, 117; Rehabilitation Act of 1973, 301; special education, 189–90; voter registration, 405–6 Laws of behavior, 50 LEA. See Local education agency Leaky gut syndrome, 208 LEAP. See Life Skills and Education for Students with Autism and Other Pervasive Behavioral Challenges Learned helplessness, 208–9 Learning: apprentice experience, 294–95; biofeedback, 52; daily living skills, 95; embedded skills, 122; forms f, 1616; massed practice, 219; social skills, 352; visual, 400 Learning ability, van Dijk assessment, 390 Learning activities, independent completion, 81–86 Learning disabilities: savant skills, 159; sensory integration, 333 Learning disability, nonverbal, 234–35 Learning Disability Association of America (LDA), 445 Learning disorder, 209–10 Learning environment, safety, 55–56 Learning language, Fast ForWord, 139–41 Learning methods, Bolles Sensory Integration, 53 Learning opportunities, life skill teaching, 214 Learning pattern, structured teaching, 366 Learning responses, precision teaching, 275 Learning strategies, graphic organizers, 162 Learning strategy, instruction, steps, 82–84
Learning styles, 210 Learning theories, life skills education, 213 Learning theory, applied behavior analysis, 15 Least restrictive environment, 189; mainstreaming, 218; resource room, 303 Least restrictive environment (LRE), 210–12 Legislation, assistive technology, 24–25 Leiter International Performance Scale, 213 Life activities, visual strategy, 402 Life roles, occupational therapy, 238 Life skills: environmental stressors, 125; residential supports, 302; support, 215. See also Daily living Life Skills and Education for Students with Autism and Other Pervasive Behavioral Challenges (LEAP), 213–15 Life skills support, 215 Light-sensitivity disorder, 198 Likely maintaining variables, 148 Limbic system, 215 Limitations, 150 Limit setting, respite care worker, 305–6 Linamood, Pat, 215 Lindamood-Bell, 215–16 Linguistic activity, utterance mean length, 220–21 Linguistic competence, augmentative and alternative communication, 35–36 Listener, 357 Listening, invitation, 174 Local education agency, 216 Locators, visual tools, 401 Locomotion, 216 Loss, 160–61 Lovaas Institute for Early Intervention (LIFE), 445 Low/poor registration, 216 LRE. See Least restrictive environment Lucas, Edourard, 382 The MAAP (newsletter), 428 MAAP Services for Autism and Asperger Syndrome, 445–46 Magnetic resonance imaging, functional, 150 Magnetic resonance imaging (MRI), 150, 217 Mainstreaming, 217–18; least restrictive environment, 211 Maintenance, 218 Major life activity, 323–24 Maladaptive attribution, 29 Maladaptive behavior, 219, 333; gentle teaching, 156–57; intervention plan, 50
487
INDEX Males, 43, 122, 145, 309 Mand, 219, 224, 391–92 Maneb, 248 MAOI. See Monoamine oxidase inhibitors Map, body and environment, 334 Mapping, social behavior, 344–46 Marshall University, 426 MAS. See Motivation Assessment Scale MASC. See Multidimensional Anxiety Scale for Children Massed practice, 219 Masturbation, 219–20 Maternally deprived orphans, 408 Mathematics, Tower of Hanoi, 382 Mathematics disorder, 209 Maturation, developmental age, 97–98 M-CHAT. See Modified Checklist for Autism in Toddlers (M-CHAT) MDS. See Multidisciplinary evaluation Meaningful activities and purposeful activities approach, 316–18 Mean length of utterance, 220–21 Meares, Olive, 197–98 Measles-mumps-rubella vaccine, 124 Measurable outcomes, applied behavior analysis, 15 Measurement: biofeedback, 51; data, 96; Individualized Education Program, 182 Mediation, 117, 221; written agreement, 229 Medical condition, mood disorders, 225 Medical emergency, 185 Medical information, 183 Medication, 12–13; mood stabilization, 226; psychopharmacology, 286; selective mutism, 327; stimulant, 363; tic disorders, 379 Medication research studies, 259 Memory, 213; episodic, 293–94; hippocampus, 170; limbic system, 215 Men, schizophrenia, 319 Menopause, 145 Mental age, 221 Mental disorders, diagnosis, 106 Mental handicap, giftedness, 158 Mental health counselor, 221 Mental illness: mood disorders, 225–26; stress adaptation network, 409 Mental impairment, 323 Mental retardation, 145, 221–22; adaptive behavior, 2; Childhood Disintegrative Disorder, 72 Mental state: attribution, 28–29; dimethylgycine, 110; psychobiology,
488
285; theory of mind, 29–30, 50, 146–47, 348, 378 Mentors, classmates, 74–75 Mercury, 222–23 Metacognition. See Cognitive Behavior Modification Metallothionein, 223 Metals, heavy, 165, 167 Meyer, Donald, 340 Milestone, developmental, 99–106 Milieu teaching, 223–24 Mind: psychobiology, 285; theory, 29–30, 56, 146–47, 347, 348, 378 Mindblindness, 225 Mind read, inability to, 60 Mineral supplements, 107–8 MLU. See Mean length of utterance MMR vaccine, 124 Mobility limitations, physical therapy, 249–50 Model, applied behavior analysis implementation, 18 Modeling, 16, 175; play guides, 193; video self, 395 Modified Checklist for Autism in Toddlers (M-CHAT), 225 Modified Inventory of Wrongful Activities, 56 Monitoring: play initiation, 193; positive behavior support, 271; self, 260 Monoamine oxidase inhibitors (MAOI), 13 Mood disorders, 225–26 Mood stabilizing medications, 226 Moore, Lynda M., 466 More Able Autistic Persons (MAAP), 428 Morpheme, 221 Mother: child relationship, 259; infant stress adaptation, 410–13; personal perspective, 453–57, 459–61, 468–69; RDI program, 289; refrigerator theory, 51, 311 Motivation: achievement attribution, 29; behavior modification, 391–92; cartooning, 62; establishing operation, 126; incidental teaching, 16–17; of others, 29; pivotal response training, 256; play groups, 191; success, 105; video modeling, 394; video selfmodeling, 396 Motivation Assessment Scale, 226 Motor action, apraxia, 19 Motor imitation, 226 Motor planning, 335 Motor response, 331
INDEX Motor skills: Asperger’s disorder, 22; dyspraxia, 132; gross, 163; regression, 309–10 Motor tics, 379 Movement: catatonia, 67; coordination of, 162–63; dance therapy, 95–96; proprioception, 283; repetitive, 169, 243, 300 Moyer, Sherry, 468–69 MRI. See Magnetic resonance imaging Multidimensional Anxiety Scale for Children (MASC), 226–27 Multidisciplinary evaluation (MDE), 227 Multidisciplinary framework, 313–18 Multidisciplinary team, 227, 314 Multisensory association method, 27 Multistep skills, 2 Multitasking, 83 Muscle catatonia, 67 Musical savant skills, 159 Music therapist, 228–29 Music therapy, 227–29 Mutually acceptable written agreement, 229 Mutual regulation, 316 Myelin, 140 National Alliance for Autism Research (NAAR), 446 National Association for the Education of Young Children, 102 National Association of School Nurses, 185–86 The National Autistic Society, 430 National Human Genome Research Institute, 446 National Human Genome Research Project, 248 National Information Center for Children and Youth with Disabilities (NICHCY), 447 National Institute for Child Health and Development (NICHD), 443 National Institute of Child Health and Human Development (NICHD), 447 National Institute of Health Autism Coordinating Committee, 449 National Institute of Mental Health (NIMH), 444, 449, 450 National Institute on Deafness and Other Communication Disorders (NIDCD), 443 National Institutes of Health, 198, 444, 446, 447, 449, 450
National Organization for Rare Disorders (NORD), 447 National Research Council, 194, 262 National Service Dogs (NSD), 11 National Voter Registration Act of 1993, 405 Naturalistic approach, 201 Natural language paradigm, 231 Needs: assistive technology, 25; underlying, 423 Negative practice, 241 Negative reinforcement, escape training, 126 Nervous system: Halstead-Reitan Neuropsychological Test Battery, 165–66; rewiring, 334; sensory integration, 333–34; stimulants, 363 Network on the Neurobiology and Genetics of Autism, 443 Neurofeedback, 231–33 Neuroimaging, 150, 233 Neurological condition: dual sensory loss, 390–91; dyspraxia, 132; sensory sensitivity, 338 Neurological damage, pesticides, 248 Neurological disorder, 98; Childhood Disintegrative Disorder, 72; pervasive developmental disorder not otherwise specified, 246 Neurological syndromes, nonverbal learning disability, 234–35 Neurologic organization, 243–44 Neurologist, 233 Neurology, 233 Neurology (journal), 434 Neuromotor, 233 Neuropsychology, 233 Neuroscience-based perspective, interventions, 140–41 Neuroscience & Biobehavioral Reviews (journal), 434 Neurotoxic, 233 Neurotransmitter, 115, 234; serotonin, 338 New England Center for Children (NECC), 428 The New England Center for Children Research Newsletter, 428 New England Journal of Medicine (journal), 434 Newsletter, 234 NLP. See Natural language paradigm No Child Left Behind Act 2001 (PL 107-110), 234, 447 Nocturnal enuresis, 123 Noise, background, 68 No-no prompt procedures, 234
489
INDEX Nonreaders: visual schedule, 367; work systems, 368 Nontraditional approaches, 6 Nonverbal communication, 33; dog, 10; highfunctioning autism, 168–69 Nonverbal information, mindblindness, 225 Nonverbal intelligence: Leiter International Performance Scale, 213; universal test, 387 Nonverbal knowledge, absurdities, 1 Nonverbal language, pragmatics, 275 Nonverbal learning disability, 55, 210, 234–35 Nonverbal mental process, Children’s Category Test, 73 Nonverbal social cues, cartooning, 62 Nonverbal stimulus: intraverbal, 392–93; tact, 392 Nonverbal students, visual strategy, 402 NOREP. See Notice of Recommended Educational Placement Norm, 245 Normalization, 235–36 Norm-referenced assessment, 236; Gilliam Autism Rating Scale, 160 North Carolina, structure teaching, 365–68 North Star Foundation, 11 Notice of Recommended Educational Placement (NOREP), 236 Novice players, 193 NSD. See National Service Dogs Nurse, 185–86 Nutritional deficiencies, 107–8 Nutritional supplements, 236 The OARacle (newsletter), 428 Object integration test, 237 Objective, 12, 48, 237 Object sorting test, 237 Obscure communication, 194 Observation, 83–86; data, 96; diagnostic, 40; direct, 111; early coping, 119 Observer reliability, 197 Obsessive-compulsive disorder (OCD), 14; pica, 250–51 Occupation, definition, 237–38 Occupational therapist (OT), 237–38 Occupational therapy, 238–39; checklist, 70 OCD. See Obsessive-compulsive disorder Office of Medical Assistance Programs, 49 Office of Special Education and Rehabilitation Services (OSERS), 447–48
490
Office of Special Education Programs (OSEP), 448 Olfactory system, 336 Online Asperger’s Syndrome Information and Support, 308 On-task behavior, 80 The Open Door Newsletter, 428 Operant: conditioning, 50, 231–32, 239; learning, 15–16; verbal behavior, 391, 393 Operational competence, augmentative and alternative communication devices, 36 Operational definition, 376 Opinion, clinical, 76 Opioid peptides, 244 Oppositional defiant disorder, 27–28 Options (Son-Rise Program), 239–41 Option strategy, 342–43 Oral-motor skills, 241 Oral sensitivity, 241 Organization: abstract information, 162; Asperger’s disorder, 22; attribution information, 29; learning strategy, 82–83; personal perspective, 467–68; school material, 68; structured teaching, 366; visual, 368 The Organization for Autism Research (OAR), 428, 448 Other minds, 225 Otherwise qualified, 322 Outcome, 237; applied behavior analysis, 15; attribution pattern, 29; clinical practice, 76; curriculum model, 390; documentation, 194; functional, 151; measure, 88, 184; planning, 265; survive and thrive, 371; van Dijk curricula, 390–91 Ovarian failure, 145 Overcorrection, 17, 241 Overfocused attention, 241 Overselectivity/overfocused attention, 241; stimulus, 364; video modeling, 394 Oversight, 201 Oxytocin, 409, 410–11 PACER Center, Inc., 448 Pangamic acid, 110 Parent, 9, 43; career transition planning, 59; collaboration, 424; consent, 91–92, 182; early coping inventory, 119; family vision statement, 183; gentle teaching, 156–57; guide competency, 294–95; Individualized Family Services Plan, 185; mediation, 221; personal
INDEX perspective, 466; RDI program, 289–90, 289–95; rights, 121, 137–39, 183; Section 504 qualification, 323; Sibshops, 341; Son-Rise Program, 240; Supplemental Security Income, 370; transition planning, 384; van Dijk approach, 390 Parental care, 411–12 Parental concern: child performance, 29; developmental surveillance, 104; present level of educational performance, 276 Parental history, 40 Parent-child interaction, 295, 411–13 Parenting, 51, 124, 155; respite care, 303–7 Partial seizures, 325 Participation: guided, 294; Individualized Education Program, 182; perspective, 174 Participation model, 37 PASS theory, 96 Pathology, Welch Method Therapy, 409–11 Patterning (Doman-Delacato treatment), 243–44 PBS. See Positive behavior support PDD. See Pervasive developmental disorders PECS. See Picture Exchange Communication System Pedantic speech, 244 Pediatrician, developmental surveillance, 104 Pediatrics (journal), 434–35 Peer, 189; developmental therapy, 105–6; friendship circle, 74; groups, 191, 228; incidental teaching, 178; inclusion, 212; Individualized Education Program, 182; life skill curricula, 213–14; mentoring, 353–54; modeling, 332, 360; personal perspective, 467– 68; shunning, 55; social skills, 352 Peer-mediated approaches, 261 Peer reviewed, 244 PEP-3. See Psychoeducational Profile–Third Edition Peptide, 244, 321, 408–15 Percentile, 245 Perception, 131 Performance level: Individualized Education Program, 182; responsibility, 295 Permission, 91–92, 182 Perseveration, 245 Perseverative scripting, 21, 245 Persistence, picture exchange communication, 252 Personality, respite care providers, 304–7
Personal perspectives, 245 Personal space, 351 Person-centered planning, 265–71, 266 Person first language, 245–46 Perspective, 116, 174, 201; intersubjective relationship, 294; other people, 62, 203; personal, 245; theory of mind, 29–30, 56, 378 Perspective-taking, 144, 174, 220; deficits, 28–29 Pervasive Developmental Disorder–Not Otherwise Specified, 246–47 Pervasive Developmental Disorder–Not Otherwise Specified Diagnostic Criteria, 247 Pervasive developmental disorders (PDD), 41, 98, 247–48; bowel problems, 53; nonverbal learning disorder, 210; not otherwise specified (PPD-NOS), 42, 246–47; Rett’s, 309; Screening Test-II, 248; social communication screening, 347 Pervasive Developmental Disorder Screening Test II, 248 Pesticides, 248 PET. See Positron Emission Tomography Petit mal seizures, 325 Pharmaceuticals, 248 Pharmacology, 97, 248 Phenotype, 248–49 Phonics association method, 27 Physical activity, 283, 333–34 Physical guidance, 163 Physical impairment, 323 Physical organization, 366 Physical presence, 143 Physical therapist, 249 Physical therapy, 249–50; hippotherapy, 170 Physician, 233, 236 Pica, 250–51 Picture discrimination, 252 Picture Exchange Communication System (PECS), 37, 251–54 Pilewskie, Anne, 457–61 Pivotal response training, 255–59; playoriented therapy, 260 Placebo, 115, 259 Placement: assistance dog, 10; educational, 121, 147–48, 236, 324; job services, 404; least restrictive environment, 210–12; mainstreaming, 217–18 Planning: cognitive assessment, 96; comprehensive program system, 89–90; work adjustment period, 414–15; Ziggurat Model, 419–24
491
INDEX Play, 105, 245, 349, 360–61; developmental assessment, 103; developmental milestones, 101; group, 191–95, 261; guidance, 194; guides, 192; imagination, 175; materials, 192; scaffolding, 193; selective mutism treatment, 326–27; symbolic, 372 Playmates, 192 Play-oriented therapies, 259–64 PLEP. See Present level of educational performance Pointing, 283, 284 Poor registration, 216 Population, 176, 361 Positive behavior support (PBS), 264–72 Positive practice, 241 Positive reaction, 352 Positive reinforcement, 113 Positive self-review (PRS), 395 Positron Emission Tomography (PET), 272 POSSE strategy, 82–83 Postemployment services, 187 Postschool activities, 383 Postsecondary education, 272 Postsecondary transition, 188–89 Posttraumatic stress disorder (PTSD), 14, 272–73 Power Card strategy, 274–75 Powerlessness, 209 Practice, 241, 397–98; appropriate, 102; disturbed, 115; massed, 219; repetitive, 63 Practitioners, board certification, 49 Pragmatics, 275, 347; test of language, 377 Pragmatic skills, I LAUGH model, 173–74 Praxis, 275; sensory integration, 335 Precision teaching, 275 Predictability strategy, 279 Prediction strategy, 82–83 Predisposition, 124 Preference documentation, 193 Preferred reinforcer, 113 Prenatal infection, 124 Prenatal tests, 9 Preparation of products, 202 Preschool children, 254 Preschool language evaluation, 76 Prescreening scales, 205 Present level of educational performance (PLEP), 275–78 Preservation, 22, 245 Pressure, 381 Presymbolic thought, 278
492
Prevalence, 176, 278; schizophrenia, 320 Prevalence rate, 43 Prevention programs bullying, 56 Priming, 279–80 Privacy rights, 137–39 Probe, 280–81 Problem behavior, information gathering, 265–71 Problem-solving, 292; adolescent test, 378; assessment, 414; cognitive learning strategies, 81–86; developmental therapy stage, 106; elementary test, 378; selfawareness, 293–94 Procedural safeguards, 281 Professional: dance therapist, 96; development, 215; gentle teaching, 156–57; mental health counselor, 221; multidisciplinary team, 227; music therapist, 228–29; SCERTS model value, 314; speech language pathologist, 358; standards, 196. See also Certification Prognosis, 41, 72, 208 Program planning, 89–90; Individualized Education Program, 181–83; Individualized Family Service Plan, 183–85; Individualized Health Care Plan, 185–86; Individualized Transition Plan, 188–89; Individual Plan for Employment, 186–87 Progress assessment, 24 Progress reports, 182 Prompt, 161–62, 252, 353; behavior generalization, 354; dependence, 166, 281; discrete trial training, 112–14; fading, 136; hierarchy, 281–82; no-no schedule, 234; trial, 385; visual, 366. See also Stimulus Prompt dependence, 281 Prompt-free approach, 224 Prompt hierarchy, 281–82 Prompting, 282; applied behavior analysis, 16; hand-over-hand assistance, 166; within-stimulus, 255 Pronoun errors, 282–83 Proprioception, 97, 172, 283, 336, 381 Prosody, 283, 300 Proteins, 108, 223 Protest, 151, 152 Protocols, Assessment of Basic Language and Learning Skills, 24 Proto-declarative, 283–84 Proto-imperative, 284
INDEX Prototype formation, 284 Proximal development, 421, 424 PRS. See Positive self-review Psychiatrist, 49, 52, 285 Psychoanalytic approach, 259–60 Psychoanalytic therapy, 19 Psychobiology, 285 Psychoeducational Profile–Third Edition (PEP-3), 285 Psychological approaches, selective mutism, 327 Psychological Medicine (journal), 435 Psychologist, 285; behavior health rehabilitation services, 49 Psychology: behaviorism, 50; cognitive behavior, 78; neuropsychology, 233 Psychometrics, 286 Psychopharmacology, 286 Psychosocial, 286 PTSD. See Posttraumatic stress disorder Public accommodations, 7 Public schools, 43–44 Public services, 7 Punishment, 286–87; discipline, 306; overcorrection, 241; response cost, 307; skill mastery, 420–21; time-out, 380 Purposeful activities, 238–39 Puzzle, 382 Pyramid Approach to Education in Autism, 251 Quality of life, 265, 271, 289, 328 Questions, 193, 319, 343; answering, 105; assessment, 368; double interview, 116; interaction, 300; learning strategy, 83–86; picture exchange communication, 253; response, 11, 177–79, 197, 253; self-initiated, 257; self-instruction, 79–80 Rank, percentile, 245 Raw scores, 362 RDI Program, 289–98 Reaction, desensitization, 97 Reactive attachment disorder of infancy or early childhood, 299–300 Reactive behavior, coping inventory, 119 Reading, 106, 198; assessment, 75–76; comprehension, 82, 227; difficulty, 117; disabilities, 198; disorders, 209 Reasonable accommodation, 272, 324 Receptive function, feature, class process (RFFC), 392
Receptive language, 300 Receptive skill loss, 207–8 Reciprocal communication/interaction, 300 Recreational supports, transition to adulthood, 4 Red flags, 300–301 Refrigerator mother theory, 43, 51, 311 Registration, sensory stimulation, 216 Regression: Rett’s disorder, 309; skill, 128 Regular Education Initiative (REI), 217–18 Regulation: dynamic environment, 291–92; self-, 331 Rehabilitation Act of 1973, 6–7, 137, 301; Section 504, 322–24 Rehabilitation therapists, 249 Rehearsal, 48; cognitive picture, 63; habit, 165; speech, 11. See also Practice REI. See Regular Education Initiative Reinforcement, 420; applied behavior analysis, 17; behavior extinction, 129; differential, 109–10; escape training, 126; establishing operation, 126; mand, 219, 224, 391–92; milieu teaching, 224; modeling behavior, 394; schedule, 318; shaping, 339; stimulus control, 364; time-out, 380; token economy, 380–81 Reinforcement, schedule, 318 Reinforcement inventories, motivation, 391 Reinforcer, 301; applied behavior analysis, 16; behavior generalization, 354; inventory, 113; motivation, 256; Picture Exchange Communication System, 251; punishment, 286; response cost, 307; token economy, 380–81 Reinforcing stimulus, discrete trial training, 113 Relatedness, 174 Relationship, intersubjective, 294 Relationships, social skills assessment, 352 Relaxation, systematic desensitization, 373 Relaxation training, 52 Reliability, interobserver, 197 Remediation, 289; RDI program, 290 Reminders, 421 Repetition, 63, 201, 299, 300, 373 Repetitive behavior, 41, 42, 72, 165, 241 Report: anecdotal, 8, 385; evaluation, 127; incident, 179–80; progress, 182 Representation: attribution, 28–29; symbol comprehension, 34–35 Requesting, 152
493
INDEX Research, 44; auditory integration training, 32–33; control group condition, 93; deficit remediation, 290–94; double blind design, 115; Eisenberg, Leon, 121; empiricism, 123; epidemiology, 125; experimental design, 128; human subjects, 196; incidental teaching, 178; integrated play group model, 194–95; milieu teaching, 223–24; social skill training, 353–54; treatment effectiveness, 385; twin studies, 386; validity, 389 Research method, clinical trial, 77 Residential facility, 301 Residential programs, 4 Residential supports, 302–3 Resource room, 303 Respite care, 303–7 Respondent conditioning, 307 Responding interventions, 267–68 Response: autism red flag, 300; discrete trial training, 112–13; environmental and development, 104–5; intraverbal, 197; receptive verbal behavior, 392; training in pivotal, 255–57; trial, 385 Response cost, 17, 307–8; punishment, 286 Response latency, 308 Responses: reinforcement schedule, 318; sensory threshold, 338; setting events, 338–39; social behavior mapping, 345 Responsibility: developmental therapy stage, 106; performance level, 295 Responsiveness, motivation, 256 Restitution, overcorrection, 241 Restricted interest, 308 Restrictions, functional limitations, 150 Retrospective video analysis (RVA), 308 Rett’s disorder, 98, 246, 247, 309–10 Rett’s disorder–diagnostic criteria, 310–11 Revocation of consent, 92 Rewiring, nervous system, 334 Rexin, Valerie Janke, 464–65 RFFC. See Receptive function, feature, class process Rights: parents, 121, 137–39, 183; student, 189–90; vocational rehabilitation consumers, 186–87 Rimland, Bernard, 311 Ritalin, 363 Ritual behavior, 67, 239–40, 299; Obsessive Compulsive Disorder, 14; play group, 192, 261 Role model, 218 Roosa, Jan, 342
494
Routine, 36, 42, 86, 169; adaptive behavior, 202; Asperger’s disorder, 22; daily, 178, 184; developmental therapy, 104–5; joint action, 201–3; life skills, 213; milieu teaching, 223–24; personal perspective, 463; play group, 192, 261; priming, 279–80; SCERTS model, 314; van Dijk approach, 390; visual strategies, 402 Rowley. See Board of Education of the Hendrick Hudson School District v. Rowley Rubella, 399 Rudeness, 55 Ruggiero Laboratory of Behavioral Neuroanatomy, 409 Rule-governed behavior, 16 Rumination syndrome, 311 Running off, 11 RVA. See Retrospective video analysis Sabotage, 201 Safety: assistance dogs, 11; bullying, 55–56; hippotherapy, 171; Individualized Health Care Plan, 185–86; social stories approach, 356 Sakai, Kristi, 453–57 Sameness, Asperger’s disorder, 22 Savant skills, 158 SB5. See Stanford-Binet Intelligence Scales– Fifth Edition Scaffolding, 193 Scaffold language development, 201 Scale: adaptive behavior, 396–97; adolescent and adult psychoeducational profile, 3; anxiety multidimensional scale, 226–27; Asperger disorder, 23, 159–60, 205; behavior rating, 148; child anxiety, 226–27; child behavior, 49; childhood autism, 71; cognitive performance, 213; communication and symbolic behavior, 87–88; differential ability, 108–9; independent behavior, 313; intelligence, 1, 362, 408; motivation, 226; student social attribution, 369 Scales of Independent Behavior–Revised (SIB-R), 313 SCERTS Model, 261, 313–18 Schedule, 367, 401 Schedule of reinforcement, 318 Schizophrenia, 13, 318–20 School, 216; daily living skills, 95; family rights, 137–39; functional behavior analysis, 148; funding, 322; least
INDEX restrictive environment, 210–11; life skill teaching, 214; Lindamood-Bell services, 215; No Child Left Behind Act, 234; performance assessment, 414; personal perspective, 455–57, 457–59, 459–61; readiness skills, 332; safety and bullying, 55–56; special and alternative, 358; special education law, 189–90; success attribution, 369; vision screenings, 198 School districts, 216, 277, 323 School Function Assessment, 320 School nurse, 185–86 School record, 137–39 School staff, 54 School system, 181–83 Schopler, Eric, 320 Science in Autism Treatment (newsletter), 440 Scoptic sensitivity syndrome (SSS), 198 Score: developmental, 103; General Conceptual Ability, 108–9; Intelligence Quotient, 196; percentile, 245; standard, 362; standard deviation, 361 SCQ. See Social Communication Questionnaire Screening, 225, 248, 321 Screening tool: Autism Behavior Checklist, 39; Autism Screening Instrument for Educational Planning, 41; Sensory Integration Inventory, 337; Short Sensory Profile, 339; Social Communication Questionnaire, 347 Screening Tool for Autism in Two-Year-Olds (STAT), 321 Script: perseverative, 245; play, 193–94; social, 349–50; teaching, 83–84 Search for structure, POSSE strategy, 82–83 Seclusionary time-out, 380 Secretin, 108, 321–22, 409, 410–11 Section 504 of the Rehabilitation Act of 1973, 137, 301, 322–24 Sedatives, 12 Seeking assistance: developmental therapy stage, 106; SCERTS model, 316 Seizure disorder, 42, 207–8, 325 Selective mutism, 326–27 Selective serotonin reuptake inhibitors (SSRI), 12, 13 Self, 293–94 Self-advocacy, 327; personal perspective, 458 Self-awareness, 293–94 Self-care, 2; respite care workers, 305
Self-confidence, 396, 399; daily living, 295; developmental therapy, 105; facilitation, 132; testing, 415 Self-contained classroom, 327; mainstreaming, 217–18 Self-contained programs, residential supports, 302 Self-control: behavior therapy, 78; repetition practice, 63 Self-determination, 327–30 Self-directed activities, independent employment, 180–81 Self-employment, 180–81 Self-evaluation, 3 Self-help skills, 330; Asperger’s disorder, 22; Childhood Disintegrative Disorder, 72; functional, 151 Self-initiated behavior, coping inventory, 119 Self-initiation, pivotal response training, 257 Self-injurious behavior, 330 Self-instruction. See Cognitive Behavior Modification Self-management: biofeedback, 51–52; pivotal response training, 256–57. See also Cognitive Behavior Modification Self-monitoring, 260. See also Cognitive Behavior Modification Self-regulation, 331; developmental milestones, 100; SCERTS model, 316; Son-Rise Program, 239–40 Self-reliance, daily living skills, 95 Self-speech, 79 Self-stimulatory behavior, 47, 219–20 Seligmann, Martin, 208 Sensation avoiding, 331 Sensation seeking, 331 Sense receptors, somatosensory, 358 Sensitivity: elimination diet, 122; error correction, 125; Modified Checklist for Autism in Toddlers, 225; sensory, 338; vestibular system, 393 Sensitivity training, 354 Sensorimotor, 331 Sensorimotor early childhood activities, 331–32 Sensorimotor organization, coping inventory, 119 Sensorimotor rhythm (SMR), 232 Sensory behavior, analysis inventory, 8 Sensory history, 333 Sensory information: Bolles Learning Method, 53; deep pressure touch technique, 97; hyperresponsiveness, 172; hyporesponsiveness, 172
495
INDEX Sensory integration, 333–34; developmental milestones, 100; dysfunction, 335–36; early childhood activities, 332; playoriented therapy, 261 Sensory Integration and Praxis Test (SIPT), 335 Sensory integration dysfunction, 335–37. See also Sensory processing disorder Sensory Integration International, 335 Sensory Integration Inventory–Revised (SII-R), 337 Sensory loss, van Dijk approach, 390–91 Sensory needs, 420; music therapy, 228–29; power cards, 274 Sensory processing, 3, 337; dysfunction, 337; infant/toddler profile, 190 Sensory processing disorder, 22; early childhood, 331–32; indicators, 181 Sensory processing dysfunction, 337 Sensory profile, 337–38 Sensory Profile, short, 339 Sensory reinforcement, extinction, 129 Sensory sensitivity, 338 Sensory stimulation, registration, 216 Sensory stimuli, 338 Sensory system, 54, 335–36 Sensory threshold, 338 Sentence structure, 253 Serotonin, 338 Service plan, Individualized Education Program, 182 Services: assistive technology, 26; due process, 117; Individualized Education Program, 181–83; Individualized Family Service Plan, 183–85; Individualized Health Care Plan, 185–86; Individualized Transition Plan, 188–89; Individual Plan for Employment, 186–87; least restrictive environment, 210–11; occupational therapy, 238–39; postemployment, 187; qualifying for, 323; residential support, 302; Section 504, 324; selfdetermination, 329; speech pathologist, 359–60; transition planning, 382–84; transition to adulthood, 4. See also Special education; Vocational rehabilitation Setbacks, learning from, 161 Setting events, 338–39 Settings, occupational therapy, 238 Sex education, 219–20 SFA. See School Function Assessment Shape, 122
496
Shaping, 339; applied behavior analysis, 16 Shared attention mechanism, 29 Sharing: experience, 293; social competence, 348; space, 351 Sharing activities, developmental therapy stage, 105 Short Sensory Profile, 339 Shunning, 55 Siblings, 459; personal perspective, 464–65 Sibling Support Project, 339–40 SIB-R. See Scales of Independent Behavior– Revised Sibshops, 340–42 Sight, 336 Signing, 392 Sign language, 381 SII-R. See Sensory Integration Inventory– Revised Silly situation, 201 Simulation: social situation strategies, 342–43; virtual environment, 397–99 Simultaneous processing, cognitive assessment, 96 Single-subject design, 342 Single-user virtual environments (SVEs), 397–98 SIPT. See Sensory Integration and Praxis Test Situation-Options-Consequences-ChoicesStrategies-Simulation (SOCCSS), 342–43 Skill: acquisition, 48, 353; adaptive behavior, 2; assessment, 3, 24, 126–27, 178–79, 313; daily living, 95; deficit, 354; development, 420–21; embedded, 122; functional goal, 149–50; generalization, 114, 155; Individualized Transition Plan, 188–89; instruction, 112, 421; learning motivation, 256; loss, 72; maintenance, 218; on-task behavior, 80; play, 191–95; practice, 219, 397–98; prompt, 113; prompting, 281–82; regression, 128; school readiness, 332; self-help, 330; social curiosity, 371; social scripts, 350; social thinking, 143–44; splinter, 360; structured teaching, 369; target behavior, 376; teaching new, 16–17; transition to adulthood, 4; van Dijk approach, 390; video modeling, 394; visual deficiencies, 198 Skin, 176, 358 Skinner, B. F., 50, 197, 219, 391–93 Sleep, 9, 232 SLP. See Speech language pathologist
INDEX Smell, 336 Social accommodation, 354–55 Social Articles, 356 Social assimilation, 354–55 Social autopsies, 343–44 Social awareness, 235, 351 Social behavior mapping, 344–47 Social cognition: double interview assessment, 116; I LAUGH model, 173–74 Social communication, 347; integrated play group, 193–94; SCERTS model, 314, 315; selective mutism, 326 Social Communication, Emotional Regulation, and Transactional Support. See SCERTS Model Social Communication Questionnaire (SCQ), 347–48 Social competence, 348; behavioral rehearsal, 48 Social contacts, circle of friends, 74 Social context: perspective taking, 144; pragmatic language test, 377; transactional supports, 316 Social cooperative games, 202 Social cue, Storymovie, 364–65 Social curiosity, survive and thrive, 371 Social deficits, 55 Social development: life skills education, 213; Son-Rise Program, 240 Social difficulties, pervasive developmental disorder not otherwise specified, 246 Social dimension: integrated play group model, 192; spontaneous play, 361 Social disabilities, situation strategy simulation, 342–43 Social-emotional development, 5 Social exchanges, sensory, 261 Social faux pas, 348–49 Social gaze, 129, 300, 349 Social goal, survive and thrive, 371–72 Social interaction, 41; classroom inclusion, 212; integrated play groups, 191–95; life skills curricula, 214; pervasive developmental disorder not otherwise specified, 247; pivotal response training, 255; residential supports, 302 Social interactions: perspective, 29–30; power card strategy, 274; priming strategy, 279 Socialization: developmental therapy, 104–6; music therapy, 228; play initiation monitoring, 193 Socializing, hyperlexia, 172 Social learning, competence, 348
Social Social Social Social Social Social Social
map, circle of friends, 74 mapping, cartooning, 63–65 movement, 105 outing, mapping, 64 phobia, 13–14 play, 349 relationships, Attention Deficit Hyperactivity Disorder, 28 Social scripts, 349–51; idiosyncratic language, 173 Social Security Administration, 370, 405 Social situation: attribution, 30, 369; autopsies, 343–44; cartooning, 60–66; mapping, 63–65; misunderstanding, 104; prediction and school bully, 55–56; psychosocial treatments, 2868; strategies, 342–43 Social skills, 2; Asperger’s disorder, 21; classroom, 214; hidden curriculum, 168; incidental teaching, 178; virtual environments, 398 Social skills defined as sharing space effectively with others, 351 Social skills training, 351–55 Social Stories, 355–57; music therapy, 228; Storymovie, 364–65 Social thinking, 143, 357, 378 Social understanding, cartooning, 61–62 Social validity, 357 Social worker, 76–77 Sociodramatic script training, 201, 261 SOCCSS. See Situation-OptionsConsequences-Choices-StrategiesSimulation SODA strategy, 83–84 Somatosensory, 358 Son-Rise Program, 239–40 Sorting, test, 237 Space, sharing, 351 SPD. See Sensory processing disorder Special day school or alternative school, 358 Special education: Angelman syndrome, 9; collaborative team, 87; extended school year, 128–29; homebound/ hospital bound program, 171–72; Individualized Education Program, 181–83; law, 189–90, 450; mediation, 221; multidisciplinary evaluation, 227; parental consent, 91–92, 182; public free, 146–47; residential facility, 301 Special interests, Asperger’s disorder, 21–22 Specialized interests, 308 Special needs, early intervention, 119 SPECT. See Positron Emission Tomography
497
INDEX Spectrum disorder, 22; Angelman syndrome, 9; autism, 43 Speech, 133; deaf individuals, 381; delay, 358; dysphasia, 118; echolalia, 120; LandauKleffner syndrome, 207; pedantic, 244; perseverative, 245; picture exchange communication, 254; pragmatics, 21; pronoun errors, 282–83; prosody, 283; rehearsal, 11; schizophrenia, 319; selective mutism, 326–27; social scripts, 350 Speech delay, 358 Speech-generating devices (SGD), 35 Speech language pathologist, 358–59 Speech pathologist, 359–60 Speech sound, Fast ForWord, 139–41 Speech therapy, 31, 359–60 Splinter skills, 360 Spoken language: comprehensive assessment, 89; development test, 377; evaluation, 126–27; skill loss, 207–8; utterance mean length, 220–21 Spoken words, symbolic thought, 372–73 Spontaneous play, 360–61 Squeeze machine. See Hug machine SSAS. See Student Social Attribution Scale SSI. See Supplemental Security Income SSRI. See Selective serotonin reuptake inhibitors SSS. See Scoptic sensitivity syndrome Standard deviation, 361 Standardization, 361 Standardization sample, 361–62 Standardized tests, 362 Standard score, 362 Stanford-Binet Intelligence Scales–Fifth Edition (SB5), 1, 362 STAT. See Screening Tool for Autism in Two-Year-Olds State assessments, 277 State government, 404–5 State voter restrictions, 405 Static intelligence, 291–92 Statistical significance, 76 Statistics, 361 Status seizures, 325 Stehli, Annabel, 32 Stereotypic behavior, 363 Stimming behavior, 239–40 Stimulant medications, 363 Stimulus, 363; behavior generalization, 354; control, 364; desensitization, 97; discriminative, 112, 114–15; eye gaze, 129, 300, 349; fading, 136; intraverbal
498
response, 197; learned helplessness, 208–9; low/poor registration, 216; nonverbal, 392–93; overselectivity, 364, 394; overselectivity/overfucosed attention, 241; pragmatic language test, 377; prompting, 113; punishment, 286–87; reinforcing, 113; respondent conditioning, 307; responding to multiple, 255–56; sensory, 338; token economy, 380–81 Stimulus control, 364 Stimulus overselectivity, 255, 364 Stimulus-response model, Cognitive Behavior Modification, 78 Stool, 123 Stop, SODA strategy, 83–86 Story, fear-reducing, 64 Storymovies, 364–65 Strategy: augmentative and alternative communication, 35; cognitive learning, 81–86; incidental teaching, 178; play guidance, 194; power card, 274; shaping behavior, 339; social skills training, 353; van Dijk approach, 390–91; visual, 400–403 Strategy production, 82–84 Stress adaptation, autism spectrum disorder, 408–13 Stressful situations, habit rehearsal, 165 Stress management, respite care workers, 305 Stressor, environmental, 125 Structure: supports, 421; teaching and visual, 368–69; visual tools, 401 Structured Teaching (TEACCH), 104, 365–69 Struggle, 371–72 Student: bullying, 54–56; challenging behavior, 17; direct instruction, 110–11; disturbed practice, 115; high school, 404–5; homebound/hospital bound program, 171–72; Individualized Education Program, 181–83; Individualized Health Care Plan, 185–86; Individualized Transition Plan, 188–89; legal protection, 189–90; mainstreaming, 217–18; Notice of Recommended Educational Placement, 236; personal perspective, 465–66; residential facility, 301; response trial, 385; schedules, 366–67; school records disclosure, 136–37; strengths, 276; survive and thrive, 371–72; transition planning, 382–84; visual strategies, 402
INDEX Student Social Attribution Scale (SSAS), 369–70 Studies to Advance Autism Research and Treatment Network (STAART Network), 449 Stupor, 67 Substance, desensitization, 97 Substance abuse, autism, 124 Substantial limits, 323 Success: developmental therapy, 106; environmental response, 105; environmental stressors, 125; personal perspective, 467–68 Successive processing, cognitive assessment, 96 Summarize main idea, POSSE strategy, 82–83 Summer school, 128–29 Supervision, integrated employment, 191 Supplemental Security Income (SSI), 370, 405 Supplementary services, least restrictive environment, 210–11 Support: circle of, 74; emotional, 123; life skills, 215; mental retardation, 222; novice players, 193–94; personal perspective, 453–55; school function assessment, 320; siblings, 339–41 Supported employment, 370 Support groups: parents, 341; sibling support project, 339–41 Supports: facilitated communication, 132–33; residential, 302; SCERTS model, 316; self-determination, 327–29; structure and visual, 421; transition planning, 382–84; visual, 400–401 Supreme Court of U.S., 147 Surthrival, 371–72 Surveillance, developmental, 103–4 SVEs. See Single-user virtual environments Swallowing disorders, speech therapy, 359 Symbolic development, behavior, 87–88 Symbolic dimension: integrated play group model, 192; spontaneous play, 360 Symbolic play, 372 Symbolic skills, 36 Symbolic thought, 278, 372–73 Symbols, 34–35 Symptom, 300, 373; central auditory processing disorder, 67–68; highfunctioning autism and Asperger syndrome, 169; posttraumatic stress disorder, 273; schizophrenia, 319; scoptic sensitivity syndrome, 198; toxicology, 382; treatment effectiveness, 385
Syndrome, 373 Systematic desensitization, 373 Tact, 375, 392 Tactile, 375 Tactile defensiveness, 375; Wilbarger Protocol, 414 Tactile system, 336, 375 Target behavior, 318, 376; intervention framework, 50; motivation, 256; shaping, 339 TASH (association), 449 Task: chaining, 69; completion, 367–68; decisions, 83; demand, 421; learning motivation, 256; organizers, 401; school, 320; visual instruction, 369 Task analysis, 16, 69, 376 Taste, 241, 336 TEACCH program. See Structured Teaching;Treatment and Education of Autistic and Related Communication Handicapped Children Teacher: classroom inclusion, 212; direct instruction, 110–11; learning strategy instruction steps, 82–84; personal perspective, 465–66; RDI program, 289–95 Teaching: abstract concepts, 161; curriculum, 93–94; discrete trial training, 111; errorless, 112, 392; hidden curriculum, 168, 421; incidental, 177–79; independence, 80; masturbation, 219–20; milieu method, 223–24; pivotal response training, 257; play skills, 194–95; session data collection, 178–79; skills, 16–17, 421; social skills, 353– 54; video use, 401–2 Team: collaborative, 87; evaluation procedures, 323; Individualized Education Program, 181, 210–11; Individualized Family Services Plan, 185; individualized planning, 89; Individual Plan for Employment, 186–87; multidisciplinary, 227, 314; school health, 185; transdisciplinary, 37, 332; transition planning, 384 Tech Act of 1994, 25 Technology. See Assistive technology Technology Related Assistance for Individuals with Disabilities Act of 1988, 25 Telecommunication, Americans with Disabilities Act, 7
499
INDEX Test: intelligence, 196; object integration, 237; object sorting, 237; scores, 18; standardized, 362 Testimonial, 376 Test of Adolescent and Adult Language– Fourth Edition (TOAL4), 376 Test of Language Competence (TLC), 376–77 Test of Language Development–Intermediate, Third Edition (TOLD-I), 377 Test of Language Development–Primary (TOLD-P), 377 Test of Pragmatic Language (TOPL), 377 Test of Problem Solving–Adolescent (TOPS-A), 378 Test of Problem Solving–Elementary (TOPS-E), 378 Tetanus, 77 Theme-oriented activities, 202; SCERTS model, 317 Theory of mind, 29–30, 56, 378–79; false belief paradigm, 136–37; social communication, 347; social faux pas, 348 Therapeutic goal, assistance dogs, 11 Therapeutic intervention, sensory integration, 334 Therapeutic riding, 171 Therapists, 96 Thimerosal, 124, 223, 311, 389 Thinking: developmental individual-difference relation-based intervention, 99; developmental milestones, 101; mental retardation, 221–22; social, 357; strategy story, 83 Thought: presymbolic, 278; structured teaching, 366; symbolic, 372–73 Threat perception, 7–8 Thrive, 371–72 Tic disorders, 379–80 Time, 123, 202, 224 Time-out, 10–11, 380 Timers, 401 TLC. See Test of Language Competence TMT. See Trail-Making Test TOAL4. See Test of Adolescent and Adult Language–Fourth Edition Toddler: modified checklist for autism, 225; proto-declaration, 283–84; sensory profile, 190 Toe walking/equinus gait, 380 TOH. See Tower of Hanoi Token economy, 113, 380–81; applied behavior analysis, 17–18; response cost, 307
500
TOLD. See Test of Language Development– Intermediate, Third Edition;Test of Language Development–Primary Tonic-clonic seizures, 325 TOPL. See Test of Pragmatic Language TOPS. See Test of Problem Solving– Adolescent;Test of Problem Solving– Elementary Total communication, 381 Touch, 336 Touch pressure, 97, 381 Touch therapy, 381 Tourette’s disorder, 379 Tower of Hanoi (TOH), 382 Toxicology, 382 Toxins, 97, 124, 167, 222–23 Trade schools, 404 Trail-Making Test, 382 Training: applied behavioral analysis, 18; attribution, 30; brain development, 243; discrete trial, 111–14; escape, 126; functional protest, 151; music therapist, 228–29; neurofeedback, 232; picture exchange communication, 252–54; pivotal response, 255–57; play guides, 192; Sensory Integration and Praxis Test, 335; sensory integration therapy, 334; social skills, 351–55; speech language pathologist, 358; virtual environments, 397–98; work adjustment period, 414–15 Transactional support, 316 Transdisciplinary team, 37, 332 Transfer of skills, 354 Transition: adulthood, 4–5; developmental therapy stage, 105; Individualized Family Services Plan, 184; individualized plan, 188–89; personal perspective, 458; planning, 328–29, 382–84; postsecondary, 188–89; priming strategy, 279; sensory processing disorders, 332; visual tools, 401; workforce, 59–60 Transition planning, 382–85 Transition services: Individualized Education Program, 182; present level of educational performance, 277; vocational rehabilitation, 404 Traumatic experience, stress following, 14 Treatment, 43–44; baseline, 47; effectiveness, 385; mood disorders, 226; RDI program development, 289; selective mutism, 326–27
INDEX Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), 365–68 Treatment effectiveness, 385 Trial, 385; clinical, 77; discrete, 16, 112–14; mass, 219; prompt, 385; response, 385 Tricyclics, 13 Trigger, 423 Tuberous sclerosis complex, 385–86 Tumors, 385–86 Turn-taking, 36; SCERTS model, 316; van Dijk approach, 390 Twenty Questions Task, 386 Twin studies, 386 Two-year-olds, screening tool, 321 Typing, 133–34 Underlying Characteristics Checklist (UCC), 423 Understanding, 174; social situations, 60–61 Unexpected behavior, 346 UNIT. See Universal Nonverbal Intelligence Test United Cerebral Palsy Association, 244 Universal Nonverbal Intelligence Test (UNIT), 387 Unspoken code, social stories, 356 U.S. Autism and Asperger Association, Inc., 428 USAA Newsletter, 428 Utterance mean length, 220–21 VABS-II. See Vineland Adaptive Behavior Scales–Second Edition Vaccinations, 223, 311, 389, 399; autism, 124 Vaccinations (thimerosal), 389 Validity, 389; concurrent, 91; social, 357 Van Dijk approach, 390–91 Variables, 47 Verbal behavior, 391–93; echoic, 120, 392; intraverbal response, 197; mand, 219, 224; rehearsal, 48; tact, 375 Vestibular, 336, 393 Vicarious reinforcement, 394 Video analysis, retrospective, 308 Video feed-forward, 396 Video modeling, 394–95; play-oriented therapy, 260 Video self-modeling, 395–96 Vineland Adaptive Behavior Scales–Second Edition (VABS-II), 396–97 Virginia Autism Training Center, 426 Virtual environment, 397–99 Viruses, 399–400
Visceral disorders, 409–10 Vision perceptual system, 197–98; embedded figures test, 122 Vision screenings, 198 Vision statement of family, 183 Visual cue, 366 Visual information organization, 366 Visual learners, 83 Visual learning, 210, 394 Visual-motor, 400 Visual reasoning, 213 Visual representation instruction, 369 Visual schedules, 367 Visual strategies, 400–403 Visual structure in teaching, 368–69 Visual supports, 421 Vitamin B15, 110 Vitamins, 107–8, 236 Vocabulary, 21, 228, 253 Vocal behavior, 41 Vocalization, 392 Vocal tics, 379 Vocational assessment, 59 Vocational goal, 187 Vocational programs, 4 Vocational rehabilitation, 60, 404; individual plan, 186–87; programming, 404–5; work adjustment period, 414–15 Vocational Rehabilitation Act of 1973, 59, 186–87 Vocational rehabilitation agencies, 136, 404–5 Vocational rehabilitation counselor, 186–87 Vocational rehabilitation programming, 404–5 Vocational training, assistive technology, 25 Voting, 405–6 Waiting, music therapy, 228 Wait training, 407 Walking, 216; toe, 380 Walsh, William J., 223 WCST. See Wisconsin Card Sorting Test Weak central coherence. See Central coherence Wechsler Individualized Achievement Test–Second Edition (WIAT-2), 407 Wechsler Intelligence Scales for Children– Fourth Edition (WISC-IV), 408 Welch, Martha G., 408 Welch Method Therapy, 408–14 Western Psychological Services, 335 WIAT-2. See Wechsler Individualized Achievement Test–Second Edition Wieder, Serena, 99
501
INDEX Wilbarger Protocol, 414 Wiltshire, Stephen, 158–59 WISC-IV. See Wechsler Intelligence Scales for Children–Fourth Edition Wisconsin Card Sorting Test (WCST), 414 WJPB-R. See Woodcock-Johnson Psychoeducational Battery–Revised Women, 319 Woodcock-Johnson Psychoeducational Battery–Revised: Tests of Cognitive Ability (WJPB-R), 414 Words, 120 Work, 4, 191; adjustment period, 414–15; assistive technology, 25; career planning, 59; readiness skills, 404; system teaching, 367–68 Work adjustment period, 414–15
502
Workforce transition, 4, 59–60, 188–89 World Health Organization, 197 Wrightslaw (organization), 450 Writing, 106, 162, 209 Written agreement, 229 Written permission, 91–92, 182 X chromosome, 145 X-ray pictures, 67 Yeast-free (diet), 417 Youth, self-determination, 328–29 Zero Reject, 419 Ziggurat Model, 419–24 Zinc, 223 Zone of proximal development (ZPD), 421, 424
About the Editors, Advisory Board, and Contributors
EDITORS Brenda Smith Myles, PhD, is the chief of programs and development of the Ohio Center for Autism and Low Incidence, and an associate professor in the Department of Special Education at the University of Kansas, where she codirects a graduate program in Asperger syndrome and autism. The recipient of the 2004 Autism Society of America’s Outstanding Professional Award and the 2006 Princeton Fellowship Award, she has written numerous articles and books on Asperger syndrome and autism including Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns (with Southwick) and Asperger Syndrome and Adolescence: Practical Solutions for School Success (with Adreon), the winner of the Autism Society of America’s Outstanding Literary Work. Brenda has made over 500 presentations all over the world and written more than 150 articles and books on autism and Asperger syndrome. She is on the executive boards of several organizations, including the Organization for Autism Research and Maap Services, Inc. In addition, she was recently acknowledged as the second most productive applied researcher in autism spectrum disorders in the world from 1997 to 2004. Terri Cooper Swanson, MS Ed, MT-BC, has worked nationally and internationally with individuals with Asperger syndrome and autism, including working with adults with disabilities at Opportunity Village in Clear Lake, Iowa, and serving as a consultant for home, school, and community-based programs. Currently, Terri is a doctoral student at the University of Kansas in the Special Education Autism/Asperger Syndrome Program where she was a Project Coordinator for the Asperger Syndrome Research Study. She has authored several research articles and book chapters, and has presented and consulted internationally on autism spectrum disorders. Jeanne Holverstott, MS Ed, is the autism spectrum specialist at Responsive Centers for Psychology and Learning in Overland Park, Kansas, where she provides clinically based therapy, school consultation and advocacy, and diagnostic services. Prior to taking this position, she earned her master’s degree in special education from the University of Kansas, specializing in the autism and Asperger syndrome program. Jeanne has worked for 6 years with children on the autism spectrum in a variety of settings and capacities, including as a clinician, paraeducator, discrete trial therapist, consultant,
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
tutor, and camp counselor. Additionally, Jeanne has taught several courses and authored a number of articles about children with autism and Asperger syndrome. Megan Moore Duncan, BS, is a full-time wife and mother; she is also a freelance project coordinator, writer, and speaker. In addition to volunteer work in three schools and her church, Megan’s passion is to see people (especially her children) reach their full potential. ADVISORY BOARD Simon Baron-Cohen, PhD, is a professor of developmental psychopathology at the University of Cambridge and a fellow of Trinity College, Cambridge. He is Director of the Autism Research Centre at the University of Cambridge, in the United Kingdom. Baron-Cohen has authored several books, including Mindblindness and The Essential Difference: Men, Women, and the Extreme Male Brain, and the DVD-ROM, Mind Reading: An Interactive Guide to Emotions. Pat Schissel, LMSW, is the president of the Asperger Syndrome and High Functioning Autism Association (AHA), a parent and professional organization in New York providing groups, information, and conferences to families and professional affected by autism spectrum disorders. She is also an adjunct professor at Delphi University and the parent of an adult with Asperger syndrome. Stephen Shore, PhD, diagnosed with ‘‘strong autistic tendencies,’’ nonverbal until age 4, and recommended for institutionalization, Stephen completed a doctorate at Boston University focusing on helping people with autism develop their capacities to the fullest extent possible. Stephen is an internationally known author, consultant, and presenter. Pamela Wolfberg, PhD, is a professor and director of the autism spectrum graduate program at San Francisco State University. Her research and practice center on efforts to develop inclusive peer play programs for children on the autism spectrum. She has authored numerous books, chapters, and articles and actively presents worldwide. CONTRIBUTORS Jennifer M. Akullian, MS, is a research assistant for the Indiana Resource Center for Autism at Indiana University, where she is a doctoral student the School of Psychology. Ruth Aspy, PhD, is a licensed psychologist who specializes in assessment and intervention for individuals with autism spectrum disorders. She is coauthor of The Ziggurat Model. Dr. Aspy speaks nationally on this and other topics. Lisa R. Audet, PhD, CCC-SLP, is assistant professor of speech-language pathology at Kent State University where she developed the Pervasive Developmental Disorders certificate. For over 20 years she has worked extensively with individuals who possess severe communication disorders. Her research focuses on communication development for individuals with autism. Andrea M. Babkie, EdD, is currently working as an educational consultant while editing and writing. She has served on the executive committees of several international organizations, including the Council for Learning Disabilities and the presidential chain of the Division on Developmental Disabilities of the Council for 504
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Exceptional Children. Dr. Babkie has authored a number of professional articles and has presented nationally on a variety of topics in the field of special education. Bruce Bassity, RPA-C, practices primary care medicine in rural northern New York State. Katie Bassity, MS, recently completed the autism/Asperger syndrome program at the University of Kansas. She currently works as an autism consultant at the Ohio Center for Autism and Low Incidence (OCALI). James R. Batterson, MD, is a child psychiatrist at Children’s Mercy Hospitals and Clinics in Kansas City, Missouri, and runs a Tourette syndrome clinic, as well as working with patients with autism spectrum disorders. He has been the principal investigator for several medication trials with children and adolescents with these disorders. Scott Bellini, PhD, is the assistant director of the Indiana Resource Center for Autism, and is a faculty member with the Indiana University school psychology program. His research and clinical interests include social-emotional functioning for children with autism spectrum disorders, including anxiety disorders, social skills programming, and video self-modeling. Josepha Ben-Arieh, PhD, is a consultant for students with autism spectrum disorders (ASD) and Asperger syndrome. Dr. Ben-Arieh coauthored the book Autism Spectrum Disorders: Interventions and Treatments for Children and Youth and is the author of How to Use Joint Action Routines. She has presented nationally and internationally on ASD and Asperger syndrome. Susana Bernad-Ripoll, MS, is a special education practicum supervisor at the University of Kansas, where she is a doctoral student in the autism/Asperger syndrome program. Douglas Biklen, PhD, is Dean of the School of Education at Syracuse University. He is also Professor of Cultural Foundations of Education and Teaching and Leadership, faculty in Disability Studies and Director of the Facilitated Communication Institute at Syracuse University. Amy Bixler Coffin, MS, is the education autism administrator for the Ohio Center for Autism and Low Incidence (OCALI) where she coordinates and provides professional development in the area of autism spectrum disorders for Ohio schools and families. Cameron Blackwell is a 15-year-old freshman in high school, working towards an honors diploma. He was diagnosed with Asperger syndrome while in second grade. He has been very involved in his school and church, as well as attending autism-related conferences. His special passion is band. He marched with the high school band as an eighth grader and hopes to someday be a band director himself. Craig Blackwell is 12 years old and in his first year of middle school. He loves cooking, fishing, gold, and anything to do with dragons. He is beginning band and enjoys attending his brother’s marching band competitions. Eric Blackwell is a husband and father of four children (two of whom are on the autism spectrum). He is the director of technology for a large real estate brokerage and owner of Netvantedge, an Internet company that teaches and implements search engine and e-commerce strategies for business and organization. He regularly teaches and presents on e-commerce and Internet-related subjects. 505
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Jen Blackwell received her degree in education and taught students with severe emotional disabilities in a group home. Four children and two autism spectrum diagnoses later, she has returned to work in a special-needs setting, in an inclusive preschool. She and her children have served as guest speakers to education classes dealing with issues related to autism spectrum disorders. Jaime Blackwell, 10 years old, is the lone daughter among all brothers. She is in her last year of elementary school and is enjoying being ‘‘Top Dog’’ for the school year. She loves to sing, and not only has she sung with groups at church, she has performed songs in sign language for both school and church. She loves to spend time with her friends and family. Marjorie A. Bock, EdD, is an associate professor of special education at the Associated Colleges of Central Kansas where she teaches special education courses. She developed and directed the Global Rural Autism/Asperger Information Network (GRAAIN) at the University of North Dakota. She has authored several articles and presented nationally and internationally on autism spectrum disorders. Signe M. Boucher, BA, is a doctoral student in the school psychology program at the University of North Carolina (UNC). She has worked in both clinical and research capacities for Division TEACCH for several years and is currently completing her internship at UNC with a focus on developmental disabilities. Jenny Clark Brack, OTR/L, is a pediatric occupational therapist with over 14 years’ experience in school settings. Currently she works both as a staff occupational therapist within a rural special education cooperative and as a special consultant to schools in several states. Jenny has presented nationally and has been published in several occupational therapy periodicals. She is the author of Learn to Move, Move to Learn! Stacey L. Brookens, MS, is the director for Autism Services, Central Pennsylvania, at NHS Human Services, where she supervises the Stepping Stones Programs, the NHS Autism School in Altoona, Pennsylvania, and the Behavioral Health Rehabilitative Services for individuals diagnosed with an autism spectrum disorder. Martha S. Burns, PhD, CCC-SLP, serves on the faculty of Northwestern University and the professional staff at Evanston-Northwestern Hospital, both in Evanston, Illinois. She is also Director of the Clinical Specialist Market at Scientific Learning Corporation. Dr. Burns has published widely on neuropathologies of speech and language in children and adults. Kari Dunn Buron, MS, is retired from K–12 education and currently coordinating the ASD Certificate program for educators at Hamline University in St. Paul, Minnesota. She is the coauthor of The Incredible 5 Point Scale and the author of When My Worries Get Too Big and A 5 Is Against the Law! Steve Chamberlain, PhD, is an associate professor of special education at the University of Texas at Brownville. His research interests include different ways culture influences teacher/student and teacher/parent interactions in schools, and culturally responsive assessment and instruction for students with disabilities. Hyun-Jeong Cho, MS, is a second-year doctoral student in special education at the University of Kansas. Her emphasis is in self-determination and functional education. She is a graduate research assistant for Dr. Michael L. Wehmeyer. Yu-Chi Chou, MS Ed, is a doctoral student at the University of Kansas in the autism and Asperger syndrome program. 506
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Beth Clavenna-Deane, MS, is a graduate research assistant with the Transition Coalition at the University of Kansas. She is currently a doctoral student in the transition program. She has 13 years’ experience in the special education arena as a special educator and transition coordinator for students with autism and Asperger syndrome. Katherine E. Cook, PhD, is a visiting assistant professor at the University of Kansas in the Department of Special Education. Her areas of specialization include autism spectrum disorders, early childhood special education, and alternative assessment. Cook has published several articles, book chapters, and books related to autism spectrum disorders and has presented nationally. Virginia L. Cook, is a doctoral candidate in special education at the University of Kansas. She works with researchers at Juniper Gardens Children’s Project in Kansas City, Kansas. David R. Cormier, MS Ed, is an educational consultant for Connecticut’s State Education Resource Center where he coordinates the state’s Focus on Autism professional development and resource initiative. He provides training and technical assistance to education professionals and families on topics including positive behavior supports, responsible inclusive practices, and differentiated instruction. Karla Dennis, MA, CCC-SLP, is a speech pathologist for the Blue Valley School District in Overland Park, Kansas. She works with middle school students with a variety of disabilities, including autism spectrum disorders. Karla also has a master’s degree in special education with an emphasis in autism and Asperger syndrome from the University of Kansas. Lynn Dudek, MS, CCC-SLP, MBA, is a speech pathology coordinator at the Ohio Center for Autism and Low Incidence. She has supervised speech language pathologists and specialized in the treatment of individuals with autism spectrum disorders for 12 years, while also presenting on topics such as communication deficits in autism. Of particular interest to her is professional collaboration and social skills. Theresa L. Earles-Vollrath, PhD, is an assistant professor at the University of Central Missouri. Dr. Vollrath previously worked as a teacher for children with autism, as a director of an autism resource center, and as an autism specialist for a public school district. She has also coauthored several books, book chapters, and articles on autism. Jennifer B. Ganz, PhD, has been working in special education for 12 years as a general and special education teacher, an educational consultant, university instructor, and researcher. Ganz has authored several articles, book chapters, and books, and has presented on strategies to address social and communication skills for individuals with autism spectrum disorders. Peter Gerhardt, EdD, is the president of the Organization of Autism Research, a nonprofit organization, the mission of which is to fund applied research and disseminate relevant findings in support of learners with autism spectrum disorders and their families. Dr. Gerhardt received his doctorate from the Rutgers University Graduate School of Education. Kate Goldfield is a 22-year-old psychology major from Standish, Maine, who attended Goucher College in Baltimore. She has written several articles related to autism spectrum issues, and has been published in the Baltimore Sun and Hartford Courant. She has presented at autism conferences and has been involved with Asperger syndrome groups in Maine, Baltimore, and Washington, DC. 507
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Carol Gray is an educational consultant and president of The Gray Center for Social Learning and Understanding in Kentwood, Michigan, a nonprofit organization serving people with autism spectrum disorders (ASD) and those who work on their behalf. Carol developed the Social Storyapproach in 1991, and is the author of several articles, chapters, and resources. She is a recipient of the Barbara Lipinski Award for her international contribution to the education and welfare of people with ASD. Patty Dobbs Gross serves as Executive Director of North Star Foundation, a nonprofit organization dedicated to partnering assistance dogs with children to help them reach their social, emotional, and educational goals. She is the author of The Golden Bridge: A Guide to Assistance Dogs for Children Challenged by Autism or Other Developmental Disabilities. Barry G. Grossman, PhD, is a licensed psychologist who specializes in assessment and intervention for individuals with autism. He provides assessment and consultation services in the public schools as well as staff development in the area of autism spectrum disorders. Dr. Grossman coauthored The Ziggurat Model and speaks nationally. Steve Gutstein, PhD, the founder of RDI, holds a doctorate in clinical psychology and is the director of the Connections Center and board president of the Foundation for Autism Research and Remediation (FARR). Dr. Gutstein and his partner and wife of 25 years, Dr. Rachelle Sheely, have published five books and numerous article related to RDI. They travel internationally conducting workshops, training, and programs. Melanie D. Harms, MME, NMT, MT-BC, is a doctoral student and graduate research assistant in the autism/Asperger syndrome program at the University of Kansas. Melanie provides music therapy services for Gardner Public Schools and serves as the Midwest representative on the American Music Therapy Association Standards of Clinical Practice. Rebekah Heinrichs, MSN, MS Ed, works as an educational specialist in autism spectrum disorders and bullying prevention. She is a trained community facilitator with the Adults and Children Together (ACT) Against Violence Program and is the author of Perfect Targets: Asperger Syndrome and Bullying. Rebekah presents nationally on autism spectrum disorders and bullying prevention. Linda Hodgdon, MED, CCC-SLP, has pioneered the development of visual strategies for supporting students with autism spectrum disorders and related communication challenges. Author of the best-seller, Visual Strategies for Improving Communication, Linda is a popular national and international presenter who is wellknown for her practical approach to dealing with communication challenges. Andrea Hopf, MS, is a doctoral student in the school psychology program at Indiana University. As a graduate assistant at the Indiana Resource Center for Autism, she collaborated on research regarding social skills assessment and intervention for children with autism spectrum disorders. Rose Iovannone, PhD, is the director of a federally funded behavior research center, the Prevent-Teach-Reinforce Project, at the University of South Florida. She also serves as coprincipal investigator in the Professional Development in Autism Project. She has authored several articles and book chapters and has presented nationally on autism spectrum disorders. 508
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Maya Israel, MS Ed, is a project coordinator on Project POISE (Providing Outreach Instruction for Special Educators), a special education personnel preparation grant at the University of Kansas. She is a doctoral student in the area of high incidence disabilities. Tyi-Sanna Jones, MS, is a doctoral student at the University of Nevada, Las Vegas (UNLV). She teaches in the special education department at UNLV. Her research and interest areas include autism/Asperger syndrome, gifted education, and multicultural education. She has presented at national professional conferences. Joung Min Kim, MS, is a doctoral student at the University of Kansas in the autism/Asperger syndrome program. She is also a graduate research assistant for the Positive Behavior Supports Project at the Juniper Gardens Children’s Project. Jan L. Klein, MS Ed, is a doctoral candidate in special education with a minor in multicultural education at the University of Kansas. She has presented statewide and nationally on culturally responsive teaching and minority parent participation in the special education process. Whitney Mitchell Krusniak, MEd, is an educational consultant for students with autism spectrum disorders for the Ottawa Area Intermediate School District in Holland, Michigan. She is a member of Team Social Stories and has coauthored a series of articles for the Autism Spectrum Quarterly. Paul G. LaCava, PhD, earned his degree from the Department of Special Education at the University of Kansas. He has worked as a special education teacher, inclusion facilitator, and consultant. His research interests include autism spectrum disorders, historical perspectives of disability and autism, technology, and interventions for social/emotional skills. Hyo Jung Lee, MA, is a doctoral student at the University of Kansas where she worked as a project coordinator for the Asperger Syndrome Research Study, which is led by Dr. Brenda Myles. Currently, she is working at Ohio Center for Autism and Low Incidence as a research assistant. Lisa Ackerson Lieberman, MSW, LCSW, is a psychotherapist with over 30 years’ experience. A national speaker, she skillfully addresses issues related to living with a disability in the family. She has published numerous articles and a book, A Stranger Among Us, which is a comprehensive guide to hiring one-to-one providers for people with disabilities. Jennie Long, MS Ed, is a doctoral student at the University of Kansas with an emphasis in autism and Asperger syndrome. Lisa Barrett Mann, BA, is a former health care reporter and editor. She is currently a graduate student at the University of Kansas, studying autism and Asperger syndrome. Jo-Anne B. Matteo, MS, CCC-SLP, is a consultant with Pyramid Educational Consultants, Inc. Prior to working at Pyramid, she was a speech-language pathologist and special education administrator in the Connecticut public schools for 21 years. She travels extensively doing presentations and consultation on PECS and the Pyramid Approach to Education. Gary B. Mesibov, is a professor of psychology in the Departments of Psychiatry and Psychology at the University of North Carolina and Director of Division TEACCH, North Carolina’s statewide program serving people with autism spectrum disorders and 509
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
their families. Mesibov has authored numerous articles, chapters, and books on autism and related conditions emphasizing educational approaches and thinking and learning problems. He is also the editor of the Journal of Autism and Developmental Disorders. Tara Mihok is a doctoral student in special education, emphasizing in autism and behavior disorders, at the University of Kansas. She has worked as an occupational therapist for four years for the Washington, DC Public Schools and a private school in Northern Virginia. Her background also includes in-depth training in the use of applied behavior analysis in the treatment of autism. Lynda M. Moore is an elementary school teacher in a multi-age fifth- and sixthgrade class in Portland, Oregon, where she has taught for the past 12 years. Prior to working as a classroom teacher, Lynda worked for 3 years as part of a multidisciplinary team at Oregon Health Sciences University’s Children Day Treatment Center. Sherry Moyer is a regional consultant for NHS Human Services of Pennsylvania and the director of the Asperger Syndrome Coalition of the U.S. Moyer has contributed chapters to several books and speaks internationally. She is also the mother of a young adult with Asperger syndrome. Daniel W. Mruzek, PhD, is an assistant professor at the University of Rochester Medical Center. He serves as Psychology Discipline Coordinator in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program and as an investigator in the Multisite Young Autism Project, a study on early, intensive behavioral intervention for children with autism. He has authored several peer-reviewed articles and book chapters on autism and other developmental disabilities. Michele Mullendore, MS Ed, is the mother of a child with autism. In addition, she is a special education teacher in the Blue Valley School District in Overland Park, Kansas. Michele joined Blue Valley several years ago where she assisted in opening the first Applied Behavior Analysis–based program for children with autism and developmental disabilities. Stephanie Nickelson, Ed S, is a school psychologist, and Practicum Field Supervisor at the University of Kansas, where she is a doctoral student studying special education policy. She has previously participated in research and participated locally and nationally on neurofeedback. Hye Ran Park, MS, is a doctoral student at the University of Kansas, where she is specializing in autism and Asperger syndrome. Jessica Kate Peters, BS, is in the school psychology doctoral program at Indiana University, where she is focusing on children with autism and children who speak English as a second language. She is also a graduate research associate for the Early Childhood Center at the Indiana Institute on Disability and Community. Christine R. Peterson, PhD, is an assistant professor of pediatrics and team leader for the autism faculty at Strong Center for Developmental Disabilities at the University of Rochester. She provides consultation and training, and conducts research on autism and developmental disabilities, with an emphasis on social communication and transition issues for higher-functioning students with autism and Asperger syndrome. Ann Pilewskie is Director of Autism Services for the Ohio Center for Autism and Low Incidence. Carol L. Pitchlyn, MS, is a support teacher for the Kansas City Kansas Public Schools. She earned her master’s degree from the University of Kansas in autism/ 510
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Asperger syndrome studies and is currently a KU doctoral student in special education. She is a parent of an adult son with autism. She has presented nationally on families and children with disabilities. Kelly M. Prestia, MS Ed, OTR, is a school-based occupational therapist in Colorado. She has worked with students with autism and related disorders in school systems for 7 years. She has authored several articles and book chapters on autism spectrum disorders. Valerie Janke Rexin, MS Ed, is the autism spectrum disorder (ASD) consultant for the North Kansas City School District where she previously taught in a self-contained class for students with ASD for 10 years. She has a younger sister with autism, which sparked her initial interest in the area of autism. Jamie Rivetts, MS Ed, is a clinician and consultant at Michelle Garcia Winner’s Center for Social Thinking, Inc., in San Jose, California, where she leads therapy groups for children in kindergarten through high school. Jaime also consults with local school districts in the San Francisco Bay area in regard to incorporating social thinking across the student’s school day. Lisa Robbins, MS Ed, is full-time faculty at Missouri Western State University where she teaches early childhood and special education courses. She is also an autism consultant and provides training and consultation services to parents and school districts nationally and internationally. She is a doctoral student at the University of Kansas. Myrna J. Rock, BS, has worked with clients with special needs in a variety of settings. She freelances in writing curriculums and other items. David A. Ruggierio, PhD, is a thought-leader in the BrainBut Initiative at Columbia University in New York City, where he is exploring the biological basis of nuture and developing new treatments for developmental disorders including autism. He is considered a world expert on visceral brain networks and the visceral thalamic/ prefrontal cortical stress axis involved in stress-related developmental disorders. Kristi Sakai is the mother of Tom, Kito, and Kaede, and wife to Nubuo, all of whom have Asperger syndrome. She is the author of Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Syndrome Family. Fiona J. Scott, PhD, is a chartered psychologist specializing in autism spectrum disorders (ASD) based at the Autism Research Centre, University of Cambridge, and also offers independent consultation and professional training. Dr. Scott has 14 years’ experience in researching assessing children and adults with ASD and is widely published in the field. Mark Shelley is president of The Special Minds Foundation and Special Minds Productions. Mark is committed to developing visual-based technology tools that address everyday issues faced by families living with a diagnosis of autism spectrum disorder. Sheila M. Smith, MS Ed, is a doctoral student at the University of Kansas. She has spent over 20 years as a special educator, administrator, and staff developer in New York, Georgia, Virginia, Kansas, and Ohio. She presents at local, state, national, and international conferences, and has published articles and chapters on autism spectrum disorders. Tristram Smith, PhD, is an assistant professor of pediatrics at the University of Rochester Medical Center (URMC). He serves as the research director for the 511
ABOUT THE EDITORS, ADVISORY BOARD, AND CONTRIBUTORS
Multisite Young Autism Project, which is a federally funded study on early, intensive behavioral intervention based on the UCLA/Lovaas model for children with autism. He is also an investigator in a study at the Center for Studies to Advance Autism Research and Treatment at the University of Rochester. He has authored or coauthored a number of the most widely cited studies on treatment outcomes for individuals with autism spectrum disorders. Paula Tallal, PhD, is the cofounder and codirector of the Center for Molecular and Behavioral Neuroscience at Rutgers University. She has authored over 200 scientific publications and three books. She is the cofounder of Scientific Learning Corporation, the company that developed the Fast ForWord family of language and reading intervention programs. Raschelle Theoharris, MS, is a doctoral student at the University of Kansas in the deaf education program. Kai-Chien Tien, MS Ed, is a doctoral student in the autism/Asperger syndrome program at the University of Kansas. She completed a secondary education licensure program offered by the Teacher Training Center at the National Taiwan University of Arts and received an MS degree in special education from the University of Kansas. Melissa L. Trautman, MS Ed, teaches students with Asperger syndrome in the Blue Valley School District located in Overland Park, Kansas. She is a coauthor of The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations. Cynthia K. Van Horn, MS Ed, is the LIFT teacher (Learning Through Intensive Functional Teaching) at Lakewood Middle School in Overland Park, Kansas. She has authored several book and video reviews and contributed to a number of book chapters. Cynthia has presented nationally on autism spectrum disorders. Martha G. Welch, MD, is the codirector of the BrainGut Initiative at Columbia University in New York, where she is exploring the biological basis of nurture and developing new treatments for developmental disorders including autism. In addition to authoring research articles, book chapters, and books, she has presented nationally and internationally on autism spectrum disorders. Michael L. Wehmeyer, PhD, is Professor of Special Education and Director, Kansas University of Center of Developmental Disabilities. He has authored 200 articles or chapters and 20 books on disability issues, including self-determination, universal design for learning, and technology and cognitive disabilities. He is editor-in-chief of Remedial and Special Education. Michelle Garcia Winner, MA, CCC-SLP, specializes in helping students with social cognitive deficits. She runs a clinic, has authored numerous books, and speaks internationally. Michelle’s goal is to help educators and parents appreciate how social thinking and social skills are an integral part of a student’s academic as well as social experience. Brooke Young, MS, is the project coordinator at the Professional Development in Autism Center, where she is a doctoral student in the autism program at the University of Kansas. Brooke has been working in the field for 15 years as a special education teacher and autism consultant. 512