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Volume 16 Number 4 2011

Tizard Learning Disability Review Practice, management, research and innovation

Improving the lives of people with autism Guest Editor: Dr Julie Beadle-Brown

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Table of contents Improving the lives of people with autism Guest Editor: Dr Julie Beadle-Brown Volume 16 Number 4 2011

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2

Features The diagnosis and epidemiology of autism

Guest editorial

3

Greg Pasco

5

Intervention in autism: a brief review of the literature Book review

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Richard Mills and Stephen Marchant

The health of people with autistic spectrum disorders

36

Eric Emerson, Chris Hatton, Richard Hastings, David Felce, Andrew McCulloch and Paul Swift

Promoting social inclusion for children and adults on the autism spectrum – reflections on policy and practice

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Rachel Roberts, Julie Beadle-Brown and Darran Youell

This journal is a member of and subscribes to the principles of the Committee on Publication Ethics

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Guest editorial Improving lives through promoting understanding Julie Beadle-Brown

Julie Beadle-Brown is based at Tizard Centre, University of Kent, Canterbury, UK.

The policy context in the UK is currently a supportive one for people with disabilities, including those with autism. International and national policy sets out the rights of all children and adults with any form of disability to enjoy a life in the community that is fulfilling, rewarding, empowering and dignified (UN Convention on the Rights of Persons with Disabilities (United Nations, 2006); UN Convention on the Rights of the Child (UNICEF, 1989); the adult autism strategy (Department of Health, 2010)). The Disability Discrimination Act (HMSO, 2005) requires all public bodies and agencies to make reasonable adjustments to allow the full participation of people with disabilities in society. However, it appears that there is still some way to go to make change happen for all people with disabilities, in particular those with learning disabilities or autism. Whilst there is increased awareness of autism, this does not necessarily bring with it understanding of the condition and how to help people have better lives. The Autism Act (HMSO, 2009) and ensuing strategy highlighted the need, and mandated the requirement, for all health and social care staff to have at least awareness training in autism. The fact that full awareness, understanding and acceptance of people with autism as valued members of our community have not yet been achieved was illustrated only too vividly in the recent Panorama programme revealing abuse of people with learning disabilities and autism in a private hospital in England (http://news.bbc.co.uk/Panorama/hi/default.stm Undercover Care: The Abuse Exposed). Providing relevant training at different levels is not necessarily difficult to do. Awareness raising and the provision of a basic understanding can be achieved proactively by including sessions on autism in the pre-qualification training of professionals across the range of disciplines and tasks. Raising awareness of those already working in the field is logistically more difficult but can be done at a local level, as it is in Jersey, for example. Those who will be working directly with people require more in depth training focused on supporting people. This type of training is more effective if it includes a hands-on component or at least a focus on the people the trainees support so that they can apply the knowledge in practice. One risk of a large-scale demand for training is that, without guidance as to what training should include, the content and methods of delivery might not be effective or consistent. This has resulted in the National Autistic Society and the Mental Health Foundation along with a network of other organisations and training providers to develop guidance and a code of practice for training in autism. The focus of this special issue on autism is to make available and accessible to professionals working in the field of learning disability and autism, some of the knowledge base relating to autism, to help promote understanding at a more academic level. The issue will focus on four main areas relating to autism. The paper by Greg Pasco summarises diagnostic procedures and the research on epidemiology, reminding us that the generally accepted prevalence of autism spectrum conditions is 1 per cent of the population. That means that in most schools, colleges and large businesses there will be at least one person with autism, necessitating some level of awareness and understanding from those around them. Of course, as noted in the paper by Rachel Roberts, Julie Beadle-Brown and Darran Youell, autism may be over-represented in some occupations and under-represented in others, if people with autism find jobs that play to their strengths.

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Some autism self-advocacy groups express dissatisfaction with the focus on intervention in autism on the basis that society should accept and respect differences. For many people and their families, however, finding ways to reducing the disabling effects of autism is a priority. The reality is that intervention in autism is often big business and there are many types of interventions available but very few with a strong evidence base. The paper by Richard Mills and Stephen Marchant reviews the literature on some of the most commonly used and researched interventions and concludes that more methodologically sound research is needed on almost all interventions currently available. In the meantime, Mills and Marchant argue that the focus of services needs to be on providing support for children and adults to reach their potential, despite their autism, using person-centred approaches, such as the National Autistic Society’s SPELL framework (Beadle-Brown et al., 2009; Beadle-Brown and Mills, 2010), person-centred active support, positive behaviour support and total communication. Rachel Roberts, Julie Beadle-Brown and Darran Youell take this last point further and explore in detail some of the issues around the social inclusion of people with autism – policy and the knowledge of how to help people with autism be more included exists but yet, people with autism are still victims of hate crime and victimisation, bullying and are excluded by environments which make it very difficult for them to move independently around their local community, accessing services and facilities that the rest of the community access. The final paper in the issue by Eric Emerson, Chris Hatton, Richard Hastings, David Felce, Andrew McCulloch and Paul Swift explores an issue that has received relatively little emphasis in the research to date – the health of people with autism. They identify a number of available sources of data which could be used to explore the issue of health needs of people with autism spectrum conditions.

References Beadle-Brown, J. and Mills, R. (2010), Understanding and Supporting Children and Adults on the Autism Spectrum, Pavilion, Brighton. Beadle-Brown, J., Roberts, R. and Mills, R. (2009), ‘‘Person-centred approaches to supporting children and adults with autism spectrum disorders’’, Tizard Learning Disability Review, Vol. 14 No. 3, pp. 18-26. Department of Health (2010), Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England, DH Publications, London. HMSO (2005), Disability Discrimination Act, 2005, HMSO, London. HMSO (2009), Autism Act, 2009, HMSO, London. UNICEF (1989), Convention on the Rights of the Child, UNICEF, New York, NY. United Nations (2006), Convention on the Rights of Persons with Disabilities, United Nations, New York, NY.

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Feature The diagnosis and epidemiology of autism Greg Pasco

Greg Pasco is a Research Fellow in the Centre for Research in Autism and Education, Institute of Education, University of London, London, UK.

Abstract Purpose – This paper aims to describe the way in which autism spectrum disorder (ASD) is identified, defined and diagnosed; and how changes in the conceptualisation and understanding of autism have impacted on clinical practice and research findings. Specific issues relating to the nature of Asperger syndrome and the profile of females with ASD are discussed. Finally, the apparent increase over time in the incidence of autism is considered. Design/methodology/approach – The paper is a non-systematic review of the current literature relating to the diagnosis and epidemiology of autism. Findings – Despite its diverse presentation and complex aetiology, the autism spectrum is increasingly well understood amongst professionals and the general public. Diagnostic criteria are revised periodically and new versions of the formal definitions are due to be published soon. The prevalence of ASD appears to be in the region of 1 per cent. There is a clear perception that the true incidence of autism is on the increase and, despite several well-conducted epidemiological studies, it remains impossible to confirm or refute this notion. Practical implications – Diagnosis in clinical practice should involve some reference to the formal criteria, the use of standardised diagnostic instruments and should ideally take place within a multi-disciplinary team setting. Originality/value – This paper provides an up-to-date review of current diagnostic practice for all professionals working with children and adults with ASD. Keywords Autism spectrum disorder, Asperger syndrome, Diagnostic criteria, Diagnostic practice, Medical diagnosis, Prevalence, Incidence, Learning disabilities, Intellectual disabilities Paper type General review

Introduction Autism is a neurodevelopmental disorder with a strong genetic component that primarily affects the way in which an individual understands, communicates and interacts with others. Autism is an extremely heterogeneous condition that affects people right across the range of intellectual impairment and has associations with a number of conditions including tuberous sclerosis (Curatolo et al., 2010), epilepsy (Levisohn, 2007) and fragile X (Moss and Howlin, 2009). Knowledge and awareness of autism amongst professionals and the general public have increased enormously in the past decade or so, in part due to the increasing numbers of children and adults identified and diagnosed and also due to a wider understanding of the needs of children and adults with a range of ‘‘invisible’’ disabilities. Media coverage of the controversy surrounding the now discredited research suggesting a link between the measles, mumps and rubella (MMR) vaccination and autism has also played a role in raising awareness of the nature of autism (Offit and Coffin, 2003). The fact that autism is highly heritable (at around 90 per cent) is long established (Folstein and Rutter, 1977), yet the specific susceptibility genes for autism have yet to be identified (Rutter, 2005). Within the autism research community, there has been a huge focus on the

DOI 10.1108/13595471111172813

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search for ‘‘causes and cures’’ (or at least effective interventions that reduce the primary impairments of autism) but recently, there are no conclusive findings relating to either the aetiology of the vast majority of cases of autism or widely accepted medical or drug-based treatments (Rutter, 2011).

Diagnosing autism spectrum disorder Defining autism The main features of autism that were described in the original papers by Kanner (1943) and Asperger (1944) remain relevant to contemporary understanding of the condition, but the interpretation of their work has inevitably evolved and expanded over the past six decades. Wing and Gould (1979) provide one of the first attempts to describe fully the core clinical features of autism as well as how these features may impact upon a wider range of individuals than previously thought. Their triad of impairments identifies the three essential deficits that constitute autism as impairments in: 1. social interaction; 2. social communication; and 3. social imagination. Clinically significant problems in these three domains result in a combination of difficulties that appear to relate directly to the profile of autism, including restricted interests and repetitive behaviour and sensory abnormalities. The fact that this range of difficulties is manifested in diverse ways has been captured by the use of the term autism spectrum disorder (ASD). The concept of ASD has gained much currency, and is generally used as an umbrella term that incorporates the various sub-types of autism, including core (or ‘‘classic’’ or ‘‘Kanner-type’’) autism and Asperger syndrome. Diagnostic classification systems The most widely referenced formal definitions of ASD are contained in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) and the World Health Organisation’s international classification of diseases (ICD) systems. These two systems have been through several periodic revisions with the current versions (American Psychiatric Association (APA), 1994; World Health Organisation (WHO), 1993) published in the mid-1990s, although a later ‘‘text revision’’ of DSM-IV (DSM-IV-TR) was published in 2000. Two facts are particularly pertinent to both DSM-IV and ICD-10: first, there was a strong collaborative effort between those involved in developing the new definitions of ASD in the two systems to ensure that there was a degree of consistency between them; second, these were the first revisions of their respective systems to include Asperger syndrome as a specific category. In DSM-IV-TR autism and its variants are classified under the category of pervasive developmental disorders. Specific subcategories include autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS) and Asperger’s disorder. The criteria for autistic disorder, broadly equivalent to core autism, require that individuals experience at least two qualitative impairments in social interaction, including difficulties with: B

the use of non-verbal skills such as eye contact, facial expression and gestures;

B

establishing and maintaining relationships with peers;

B

spontaneously sharing interests and enjoyment with others; and

B

social and emotional reciprocity.

Second, there needs to be at least one clinically significant difficulty relating to communication, including: a delay in, or lack of, the use of speech, that is not compensated for by the use of gestures or other forms of communication;

B

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B

an inability to sustain conversation;

B

the use of repetitive, stereotyped or idiosyncratic language; and

B

an absence of developmentally appropriate make-believe play.

Third, at least one form of restricted, repetitive or stereotyped interests or behaviour should be evident, including: B

preoccupations that are unusual in terms of intensity or focus;

B

inflexibility in relation to routines or rituals;

B

stereotyped or repetitive motor mannerisms, such as finger or hand flapping; and

B

persistent preoccupation with parts of objects.

Overall, there should be difficulties in at least six of the elements listed across the three domains listed above for criteria to be met. Additionally, the diagnosis of autistic disorder should be made only when there is evidence that there was onset prior to 36 months of age, and where difficulties cannot be explained by the presence of either Rett’s disorder or childhood disintegrative disorder. Note that in contrast to Wing and Gould’s Triad, the third element of the DSM-IV-TR criteria relates to restricted and repetitive interests and behaviours (sometimes referred to as RRBs) rather than social imagination, and there is no mention of sensory difficulties. The definitions of PDD-NOS and Asperger’s disorder (as Asperger syndrome is called in DSM) consist of similar lists of criteria, as well as a stipulation that the individual does not meet the criteria for any of the other PDDs, including autistic disorder. The criteria for Asperger’s disorder contain the important distinction that there should be no delay in cognitive development (effectively meaning that intelligence quotient (IQ) should be above 70) and that there was no delay in the onset of language. Researchers in the field of autism, particularly those involved in studies where the diagnostic categorisation of participants is particularly important – epidemiological studies for example – will tend to make reference to either DSM or ICD criteria. This should mean that findings can be understood more universally, and comparison and replication of studies is possible. It is not clear to what extent clinicians involved in diagnosing individuals with autism do so with specific reference to these formal criteria as opposed to relying on their clinical judgement. Indeed, it is not recommended that practitioners adhere too strictly to the DSM and ICD definitions (Charman and Baird, 2002) and the introduction to DSM-IV emphasises that the criteria and descriptions are meant to be employed by individuals with appropriate clinical training and experience, and not applied ‘‘mechanically’’ by untrained individuals (Wing et al., 2011). Furthermore, many researchers and clinicians have argued that if the criteria are followed precisely, it is virtually impossible for an individual to meet the criteria for Asperger syndrome (as opposed to autism or PDD-NOS) (Howlin, 2003). The next revisions of both diagnostic systems are due to be published shortly: DSM-5 is expected to be complete by May 2013 and ICD-11 will be available in 2015. Highlights of the proposed changes (DSM 5.org, 2010) include: B

a change of name for the overall category, from pervasive developmental disorder to ASD;

B

Asperger’s disorder will no longer be included as a separate category, but will be included under the general ASD category;

B

there will be just two core domains – social-communication deficits – with a requirement for three items to be present to justify diagnosis – and fixated interests and repetitive behaviours – with a minimum of two items needing to be evident;

B

an item relating to hyper- or hypo-sensitivity to sensory input will be included within the second domain, although this is not a necessary requirement for diagnosis; and

B

the age of onset requirement is less specific – in ‘‘early childhood’’ rather than by three years of age.

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Several of these proposed changes have inevitably generated controversy. In particular, the removal of a separate category for Asperger syndrome, initially incorrectly portrayed by some (e.g. Petitionsite.com, 2011) as the ‘‘deletion’’ of Asperger syndrome completely was a source of concern for many adults with the diagnosis, as well as their parents and advocates. Even though most people within the ‘‘Aspie’’ community now recognise that the diagnosis will not disappear in DSM-5, there are conflicting opinions about whether it is appropriate to re-organise the diagnostic hierarchy in the way that is currently proposed (see WrongPlanet.net, 2009). Clinicians and researchers are also divided in terms of the desirability, appropriateness and scientific validity of the move to place Asperger syndrome firmly within the broader ASD category (Kaland, 2011; Ghaziudin, 2010; Wing et al., 2011). See the Asperger syndrome section below for further discussion relating to this issue.

Diagnostic instruments Autism diagnostic observation schedule. The most widely-used and best validated diagnostic assessment is the autism diagnostic observation schedule (ADOS: Lord et al., 2000; 2002). The ADOS is a semi-structured assessment of social interaction, communication and imaginative play conducted by a trained examiner. The assessment takes approximately 25-45 minutes to administer and there are four different modules which are used according to the age and expressive language level of the individual being assessed – Module 1 is used with young children and those with very limited or no language whereas older adolescents and adults with fluent speech would be assessed using Module 4. The assessment involves a number of specified tasks that incorporate standardised materials, including free play, response to joint attention, telling a story from a book and functional and symbolic imitation as well as a range of conversation-based tasks in Modules 2-4 covering topics such as friendships, loneliness and emotions. Following the assessment, the examiner scores a number of items according to specified criteria, which are then used to calculate domain algorithm scores. Scores from the communication and social interaction domains are used to calculate overall diagnostic algorithm scores, and cut-off scores are used to decide whether the individual meets the criteria for an ADOS classification of autism, autism spectrum or non-autism spectrum. The first two of these outcomes are broadly matched to the classifications described in DSM-IV and ICD-10, but a number of issues need to be considered: B

Meeting the ADOS criteria for autism (or autism spectrum) is not a sufficient basis for an individual to be diagnosed – further investigation including interviews with parents and sometimes teachers and other professionals as well as observations in relevant everyday settings is an essential element of clinical diagnostic practice (see diagnosis in clinical practice section below).

B

The ADOS scoring rules were developed in relation to samples of children and adults who met diagnostic criteria for autism, PDD-NOS as well as those who did not meet clinical criteria for an ASD. As such, many individuals with Asperger syndrome may not meet the ADOS criteria for autism spectrum (although many will), so a negative outcome on the ADOS cannot be used to exclude the possibility that the individual might merit a diagnosis of Asperger syndrome.

B

Scores from the domains relating to play (in Module 1) – or imagination/creativity in the other modules – and stereotyped behaviours and restricted interests domains do not currently contribute to overall diagnostic algorithm scores – further emphasising the need to refer to additional sources of information when making a diagnostic decision.

Diagnostic interviews. As mentioned above, differential diagnosis must involve more than the direct assessment of the child or adult whose diagnostic status is being considered. Parents are invariably the best source of information about both current behaviours that may not be observed during the assessment itself and the individual’s developmental history. There are three autism-specific parent interviews that may be used as part of the diagnostic process:

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1. Autism diagnostic interview – revised (ADI-R: Lord et al., 1994; Le Couteur et al., 2003). 2. Diagnostic interview for social and communication disorders (DISCO: Wing et al., 2002). 3. Develepmental dimensional and diagnostic interview (3Di: Skuse et al., 2004). The ADI-R was developed for use in research, and is often seen as the natural ‘‘companion’’ assessment for the ADOS (Risi et al., 2006). Parents are asked about their child’s early development as well as their current and past functioning in various areas including language and communication, social interaction, interests and other behaviours. As with the ADOS, item scores are added to provide domain totals, which are then compared with cut-off scores relating to ADI-R diagnostic categories of autism or not autism. Revised algorithms that map on to a broader diagnostic category of autism spectrum have been published (Risi et al., 2006) for when the ADI-R has been used to assess a child below three years old. The DISCO was developed by Wing and Gould as an instrument to be used in clinical settings, and as a means of sharing their experience and expertise in diagnosis. Algorithms have been published that map onto ICD-10 childhood autism criteria (broadly equivalent to DSM-IV autistic disorder) as well as Wing and Gould’s own definition of ASD (Leekam et al., 2002). The 3Di was developed to provide three innovations in diagnostic interviews with parents. First, the 3Di provides a computerised format both for entering parents’ responses and for producing clinical reports. Second, there is the possibility of investigating differential diagnosis via pathways of questions where conditions other than autism may be present – including anxiety, depression and attention deficit hyperactivity disorder. Third, the 3Di attempts to offer a dimensional approach to diagnosis, as opposed to the categorical approach that is more commonly incorporated within diagnostic instruments. There is a general consensus that autism, along with other conditions, can be expressed in diverse ways and to different degrees, and that individuals with autism do not fit neatly into ‘‘boxes’’ suggested by the description of categorical subtypes. It would be an important advance in diagnostic practice if a measure of autistic symptomatology is genuinely able to represent the dimensional nature of the condition. Diagnosis in clinical practice Diagnostic practice varies considerably between individual professionals, across different professions and settings, as well as between different regions and countries. Evidence-based guidelines for good practice in the diagnosis of ASD have been developed in a number of countries, including the USA (Filipek et al., 2000), New Zealand (Ministries of Health and Education, 2008) and Scotland (Scottish Intercollegiate Guidelines Network, 2007). The National Autism Plan for Children (NAP-C) is a voluntary framework containing recommendations for good practice in the identification and diagnosis of children with ASD in the UK (National Initiative for Autism: Screening and Assessment, 2003). In relation to young children, initial parental concerns relating to a child’s development, including a failure to develop speech, will tend to be addressed with the family doctor, a health visitor or other early years practitioner. Children may then be referred to a speech and language therapist or paediatrician for assessment. Where these professionals have concerns about the child that relate to ASD, the NAP-C recommendation is that children are then referred for assessment by a specialist multi-agency team. The essential components of a multi-disciplinary assessment include: B

consideration of information from all relevant settings, professionals and other sources;

B

an autism-specific developmental and family history should be taken from the parents – such as the ADI-R, DISCO or 3Di – as well as a detailed medical history and medical examination of the child;

B

observations across settings, including the ADOS, but also unstructured observations at school or nursery as appropriate;

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B

assessment of the child’s cognitive and language skills;

B

an assessment of the strengths and needs of the family as a whole; and

B

some specific medical tests, including chromosome and fragile X testing, and investigation of any apparent issues relating to unusual sensory response and motor co-ordination difficulties may be required.

The National Institute for Health and Clinical Excellence (2011) is in the process of developing guidelines that will provide a more statutory framework for the identification and diagnosis of children and young people who may have an ASD. Publication of the final proposals is expected in September 2011. In the UK, it is most likely that preschoolers will be referred to and assessed within a multi-disciplinary team, most often based at a Child Development Centre (CDC). The situation for children of primary school age and older is less clear. Some younger school-age children may also be referred to CDC-based teams, whereas others may be referred for assessment at Child and Adolescent Mental Health Services (CAMHS). Some CAMHS will provide multi-disciplinary assessments, but others may depend on assessment and diagnosis that is conducted by a single professional – often a child psychiatrist or clinical psychologist – which may have implications for the quality and reliability of the diagnostic decision. The situation for adolescents and adults is much less clear, particularly for those that do not have a learning disability, and for whom there may be relatively limited statutory provision of services. Many teenagers for whom there are concerns that may relate to ASD may be referred for assessment within their local CAMHS. It is most probable with such a ‘‘late’’ referral that the question of diagnosis relates to the possibility of Asperger syndrome or high-functioning autism (HFA), and that the child’s abilities and good language skills have masked the degree of difficulty experienced in social understanding. As such, it is essential that professionals receiving these referrals have a good understanding of the issues relating to this part of the autism spectrum. Asperger syndrome The debate about the relationship between Asperger syndrome and the rest of the autism spectrum has been ongoing since the 1980s when Wing (1981a) brought Asperger’s work to a wider audience. Within the community of people with Asperger syndrome and autism and their parents and other family members there is much disagreement about whether Asperger syndrome is actually a sub-group within the autism spectrum, and virtually synonymous with HFA, or whether it is a distinct and independent condition, albeit with similarities in areas of difficulty and needs (National Autistic Society web site). Certainly, some of the contention relates to the use of labels, and the perception that the term ‘‘autism’’ is understood by professionals and within the public-at-large as relating to individuals with profound difficulties and limited language ability who have special educational needs. In everyday, clinical practice individuals with an IQ within or above the normal range, who have good language without apparent delayed onset of speech are very likely to be diagnosed with Asperger syndrome, even if the combination of difficulties with social interaction, reciprocal communication and social understanding are such that they experience enormous difficulties in their day-to-day life. The use of the label, and its adoption as a positive description by many individuals with an Asperger diagnosis has generally been viewed as a positive development over the past three decades or so, and has enabled many people with genuine need to access services that may not otherwise have been available to them (Klin and Volkmar, 2000). However, for those involved in autism research, the question of the specific nature of Asperger syndrome and whether it is possible to distinguish it from autism has generated enormous interest, and not a little conflict and division. There are two main (linked) issues around which the debate is framed: 1. Is Asperger syndrome distinct from autism and other ASDs in terms of its probable causal mechanisms, manifestation and long-term outcomes?

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2. Is it possible to define criteria for Asperger syndrome in a way that makes it possible to diagnose it differentially from classic autism, PDD-NOS, etc.? Wing’s initial intention in drawing attention to Asperger’s work was to emphasise that there was no evidence for a distinction between Asperger syndrome and autism, and, therefore, that individuals whose profiles were similar to those described by Asperger should be considered as in need of support and services. She has since expressed concern that she opened a ‘‘Pandora’s box’’ as her original account immediately led to widespread research into the possible differences between the two conditions. In a comparison of outcomes in adulthood between individuals with HFA and those with Asperger syndrome, Howlin (2003) found very few meaningful differences, with both groups having poor outcomes in terms of employment, independent living and friendships. Furthermore, whilst there were clear differences between the two groups in early development and the age of onset of spoken language, there were no statistically significant differences in measures of language and communication ability in adulthood, with both groups showing a degree of impairment despite average IQs of 100 in both groups. Howlin concludes that there is no substantive evidence for a distinction between HFA and Asperger syndrome. Whilst it is not possible to say that there is a consensus, many researchers (Kamp-Becker et al., 2010; Ozonoff et al., 2000; Macintosh and Dissanayake, 2004; Sanders, 2009) have reached the same conclusion. If this is indeed the case, it is not surprising, therefore, that it has proved difficult or impossible to develop criteria that differentiate Asperger syndrome from other autism sub-categories. The recognition that current DSM and ICD definitions could not be applied usefully (Leekam et al., 2000) has led some to develop their own criteria or diagnostic systems (Gillberg, 1998; Klin et al., 2005). With regard to DSM, it appears that the situation will be resolved in DSM-5 by incorporating Asperger syndrome more clearly within the ASD category, although at this stage it is not clear whether there will be a similar development in ICD-11. Women and girls with ASD The fact that autism affects more males than females has been long established (Wing, 1981b), with evidence of male-female ratios that vary from approximately 2:1 for individuals with ASD and severe learning disability to in excess of 10:1 in relation to those with a diagnosis of Asperger syndrome. Indeed, Asperger originally suggested that the individuals that he was describing exhibited an extreme form of male characteristics and the ‘‘extreme male-brain theory of autism’’ (Baron-Cohen, 2002) has been extensively explored in the last decade or so. Two issues relating to women and girls with ASD have increasingly become the subjects of specific interest (Research Autism, 2010): 1. Is there a systematic under-diagnosis of females with ASD? 2. Is the profile of symptoms, behaviours and characteristics of females who are diagnosed different from that of their male counterparts? The question of under-diagnosis has long been ignored, partly perhaps because of the perception amongst clinicians and researchers that autism is a disorder that primarily affects males. There are suggestions from the literature that there is a tendency for girls not to be identified, referred and diagnosed with ASDs due in part to this stereotype of autism and also due to apparent sex differences both in the presentation of symptomatology within the clinical population (Kopp and Gillberg, 1992) and in the distributions of autistic traits within the broader population (Williams et al., 2008). There is emerging evidence of differences in brain anatomy (Craig et al., 2007) and hormonal levels (Ingudomnukul et al., 2007) between women with ASDs and typically developing women. There is some evidence that the ‘‘typical’’ profile of girls and women with a diagnosis of ASD is qualitatively different from that of boys and men with ASD (Carter et al., 2007; Hartley and Sikora, 2009; Kopp and Gillberg, 1992; Lord et al., 1982; McLennan et al., 1993) although it is often reported that the proportion of female participants with ASD in many studies is too small to enable meaningful comparison (Hartley and Sikora, 2009). Given the recent interest

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in this issue, it is highly likely that there will be more studies into the nature of ASD in girls and women in the near future. Screening for autism The early identification of children who may be a risk for a diagnosis of autism has a number of important potential benefits, including: B

earlier diagnosis;

B

earlier access to information and support for parents and family members;

B

earlier participation in a range of intervention programmes; and

B

more potential for strategic planning of educational and care services.

The Checklist for Autism in Toddlers (CHAT: Baron-Cohen et al., 2000) was one of the first autism screening instruments to be developed. The CHAT was designed to be used at routine developmental checks administered by health visitors when children were 18 months old. In the context of an ‘‘unselected’’ population sample, the CHAT was able to identify children who were later diagnosed with autism, but many children who were subsequently diagnosed passed the screen (so-called false negatives) and it was not recommended to be used as a routine primary screener (Baird et al., 2000). Subsequent alternative screening instruments have been developed and evaluated (Allison et al., 2008; Robins and Dumont-Matthieu, 2006; Stone et al., 2004) but so far none have proved to be sufficiently robust at identifying children at risk for ASD to merit recommendation by the UK National Screening Committee for routine use within the child health surveillance system (Mawle and Griffiths, 2006). It may be that the need to screen for autism in toddlers in countries such as the UK or the USA becomes less pressing as the age of diagnosis falls due to increased knowledge of ASD in professionals and the general public. Furthermore, it is likely that screening instruments will detect the most obvious cases for whom early identification and referral for diagnosis will tend to happen earlier anyway. One screening tool designed specifically to identify Asperger syndrome in school-age children – the Childhood Asperger Screening Test – was renamed to reflect the fact that it actually identified children with all forms of ASD equally well (Childhood Autism Screening Test (CAST): Williams et al., 2008). Screening instruments relating to ASD in adults have been developed (Nylander and Gillberg, 2001; Woodbury-Smith et al., 2005) but none have yet been evaluated with sufficient rigour to determine how accurate and efficient their use could be.

Epidemiology of autism spectrum disorders The issue of the prevalence, and particularly the incidence (i.e. the proportion of newly diagnosed cases within a given population), of ASD has long been a topic of great controversy (Rutter, 2009). There is a perception, often supported by well-conducted research studies, that the population of people with ASD is inexorably on the increase, and there has been intense speculation about the cause of this rise in numbers. In some cases, the debate has been fuelled by individuals with a vested interest in ‘‘talking up’’ the increase, as in the hypothesised link between the MMR vaccine and autism (DeStefano and Thompson, 2004). It is of value, therefore, to consider the historical context of epidemiology and autism, along with a consideration of the various factors that might be responsible for any increase in the incidence of ASD. The prevalence of autism: changes over time Early studies. Lotter (1966) carried out one of the first systematic studies investigating the prevalence of autism. He used a very conservative set of criteria, based on the work of Kanner, and found that there were approximately 4-5 children per 10,000 with autism – about 0.05 per cent. Wing and Gould (1979) set out to identify the number of children within special needs school meeting the criteria for autism. They confirmed Lotter’s findings with regard to those with the most restrictive Kanner-type autism, but identified nearly three times

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as many – all of whom had a learning disability – who met less-prescriptive criteria (but showing difficulties relating to the triad of impairments described above). Ehlers and Gillberg (1993) investigated the epidemiology of ASD amongst children in Gothenberg in Sweden, focussing on those with cognitive abilities within the normal range and above (i.e. IQ . 70). The findings suggested that the prevalence of Asperger syndrome and HFA was 36 per 10,000, with an additional group of similar size having some degree of social impairment but not meeting the full diagnostic criteria for an ASD. The combined figure (Table I) from these three diverse, but all methodologically rigorous, studies has provided the benchmark against which subsequent epidemiological studies of autism have been compared – approximately 1 per cent of the population, with perhaps two thirds of these meeting formal diagnostic criteria. Recent studies. The Special Needs Autism Project (SNAP) study (Baird et al., 2006) was based on a careful examination of the diagnostic status of nearly 57,000 children living in an administrative region in the South East of England. Some children who were subsequently identified as having an ASD were part of the initial cohort from the CHAT study (Baron-Cohen et al., 2000) and had been followed up periodically into their early teens, some were children with identified special needs attending local mainstream or special schools and some were referred directly by health professionals. The findings of this study were broken down into categories, allowing for some detailed comparisons to be made with other prevalence studies. The narrowest and most conservative estimate of 25 per 10,000 (0.25 per cent) included those who met the ICD-10 criteria for childhood autism and were also above diagnostic cut-off scores on both the ADOS and the ADI-R. This figure increased to 39 per 10,000 (0.39 per cent), when those children for whom there was an expert clinical consensus for a diagnosis of childhood autism, even if the scores from diagnostic instruments were not in agreement. Approximately, three quarters of these children had a learning disability. In total, 77 per 10,000 (0.77 per cent) were identified as meeting broader criteria for an ASD including PDD-NOS. The total prevalence figure, therefore, was 116 per 10,000 (1.16 per cent), which, although a little higher than the 91 per 10,000 figure derived from the earlier studies described above, is still very much with the same ‘‘ballpark’’ figure of approximately 1 per cent. It is worth noting that amongst even the most narrowly defined group of children meeting childhood autism criteria only two-thirds had a local diagnosis (i.e. a third of them did not have a ‘‘clinical’’ diagnosis, but were considered to meet ‘‘research’’ criteria), and the total prevalence figure for all ASDs would have been approximately 44 per 10,000 if only those with a local clinical diagnosis were counted. A further report (Charman et al., 2009) based on the SNAP study data describes the process of re-assessing a proportion of the children meeting childhood autism criteria according to the criteria originally used by Lotter (1966). Whilst 20 per cent of those re-assessed did not meet these relatively restrictive criteria, the remaining children did, relating to a prevalence

Table I Prevalence figures from epidemiological studies of ASD Study

Criteria

Lotter (1966) Wing and Gould (1979) Ehlers and Gillberg (1993)

Kanner criteria Kanner þ triad of impairments Asperger syndrome/high functioning autism þ other ASD Totala DSM-IV autistic disorder DSM-IV other PDD/ASD Total ICD-10 childhood autism ICD-10 other ASD/PDD Total

Chakrabarti and Fombonne (2005)

Baird et al. (2006)

Prevalence (per 10,000)

Percentage

4-5 5 þ 15 ¼ 20 36 þ 35 ¼ 71

0.05 0.20 0.71

91 22 37 59 39 77 116

0.91 0.22 0.37 0.59 0.39 0.77 1.16

Source: a Total of Wing and Gould (1979) þ Ehlers and Gillberg (1993) studies only

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of approximately 32 per 10,000 – more than six times higher than Lotter’s original figure. Clearly, there are issues with the way that these criteria, however, clearly they were described, might be reinterpreted after a period of four decades, but these data suggest that there may well have been a change in incidence over the years that cannot just be accounted for by changes in the way that autism is defined. Various research groups have attempted to explain the perceived increase in incidence of autism. King and Bearman (2009) based their findings on an examination of the California Department of Developmental Services database, where the diagnoses of all children with disabilities in the state are recorded. They argue that diagnostic substitution (where an individual originally had a sole diagnosis of mental retardation, i.e. they had a learning disability – subsequently had this replaced by a sole diagnosis of autism) and accretion (where the diagnosis of autism has been added to the previous condition) accounted for around a quarter of the increase in local prevalence. Diagnostic changes were most likely to occur in the year in which new diagnostic criteria were published or local policy and service provision changed. Whilst the issue of changing diagnostic practice in relation to children who may also have a learning disability clearly could account for increased prevalence figures, this study still leaves the underlying question of what could account for the remaining 75 per cent of increased prevalence, especially given that the major changes in the conceptualisation of the autism spectrum relate to individuals with an IQ in the normal range. Furthermore, it is important to note that this study is based on locally diagnosed cases, which may only account for a small proportion of all potential cases, according to the findings of the SNAP study (Baird et al., 2006). In a systematic review of autism prevalence studies, Williams et al. (2006) argue that a number of methodological issues account for the variation in prevalence estimates, including: B

the diagnostic framework used;

B

the year in which cohorts were investigated;

B

the method of ascertainment (prospective studies yield higher figures than retrospective studies);

B

the region where studies were conducted (Japanese studies have reported higher figures than those conducted in the USA; studies in urban areas yield higher estimates of prevalence than those in rural areas); and

B

age of participants.

In an attempt to control for some of these confounds, Chakrabarti and Fombonne (2001, 2005) conducted two studies at different times in the same geographical area in relation to the same diagnostic criteria – best clinical estimates of DSM-IV based on the ADI-R and other assessments. These two studies report prevalence figures of 63 and 59 per 10,000 for all ASDs, respectively, and 17 and 22 per 10,000 for autistic disorder. Approximately, one-third of all cases from the later study had a learning disability. The figures from the consecutive studies were not significantly different, and the authors conclude that there is no evidence of an increase in incidence. Whilst these figures are lower than those reported by Baird et al. (2006), it is important to note that the oldest children in the Chakrabarti and Fombonne were six years of age, and, therefore, brighter children with more subtle presentations of autism, including Asperger syndrome may not yet have been identified. Rutter (2009, 2011) concludes that it is not possible to answer the ‘‘key basic issue’’ of whether there has been an increase in the true incidence of ASD over the past few decades, and suggests that higher prevalence estimates from recent studies benefit from better ascertainment of individuals who might merit a diagnosis and that the criteria for ASD have undoubtedly broadened over time. However, although he discounts the suggestion that the use of the MMR vaccine can in any way be viewed as contributing to increased prevalence, he accepts that there may indeed be other environmental and social factors that are pushing increased rates of autism, particularly in more developed countries, including:

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B

pre- or post-natal exposure to certain toxins;

B

the rising age of parenthood, particularly in relation to the age of fathers; and

B

maternal immigration.

Many researchers involved in examining the prevalence of autism (Charman et al., 2009; King and Bearman, 2009; Rutter, 2009, 2011; Williams et al., 2006) call for more and better longitudinal studies, involving consistent case definition and ascertainment procedures from multiple sources within specific geographical and administrative regions.

Summary Autism is a developmental disorder with a very varied presentation, and is probably caused by diverse factors, primarily genetic. The broader aspects of the autism spectrum are increasingly well understood by both professionals and members of the general public, although many may be unaware of the precise criteria that determine the diagnostic boundaries. The nature of the diagnostic process depends on the context (i.e. research vs clinical) but diagnostic decisions are broadly made with reference to the ICD and DSM definitions, should ideally involve standardised diagnostic instruments and clinical diagnostic decisions are best made within a team setting. Despite increased knowledge of the autism spectrum, several crucial issues remain unresolved, including the ability to define the spectrum dimensionally rather than categorically, the diagnostic validity of Asperger syndrome and the possibility that ASDs are under identified in females, in part perhaps due to a distinct profile of the condition in women and girls. The fundamental question of whether autism is on the increase remains unanswered, although there is a consensus on the need to adhere to a more specific methodological framework when conducting prevalence studies. It is not clear how proposed changes to the formal criteria for ASD will affect measures of prevalence, everyday clinical diagnostic practice or the use of terminology to describe sub-groups of autism.

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National Institute for Health and Clinical Excellence (2011), ‘‘Autism spectrum disorders in children and young people: recognition referral and diagnosis’’, available at: http://guidance.nice.org.uk/CG/ Wave15/78 (accessed 10 March 2011). Nylander, L. and Gillberg, C. (2001), ‘‘Screening for autism spectrum disorders in adult psychiatric outpatients: a preliminary report’’, Acta Psychiatrica Scandinavica, Vol. 103 No. 6, pp. 428-34. Offit, P.A. and Coffin, S.E. (2003), ‘‘Communicating science to the public: MMR vaccine and autism’’, Vaccine, Vol. 22, pp. 1-6. Ozonoff, S., South, M. and Miller, J.N. (2000), ‘‘DSM-IV-defined Asperger syndrome: cognitive, behavioural and early history differentiation from high-functioning autism’’, Autism, Vol. 4 No. 1, pp. 29-46. Petitionsite.com (2011), ‘‘DO NOT remove Aspergers from ASD in DSM-5’’, available at: www. thepetitionsite.com/2/do-not-remove-aspergers-from-asd-in-dsm-5/ (accessed 24 August 2011). Research Autism (2010), Research Autism/Lorna Wing Series of Conferences and Seminars: Autism in Women and Girls, Research Autism, London, 25 February 2010, available at: www.researchautism.net/ pages/about_research_autism/research_autism_events/20100225_women_girls_autism Risi, S., Lord, C., Gotham, K., Corsello, C., Chrysler, C., Szatmari, P., Cook, E.H. Jr, Leventhal, B.L. and Pickles, A. (2006), ‘‘Combining information from multiple sources in the diagnosis of autism spectrum disorders’’, Journal of the American Academy of Child and Adolescent Psychiatry, Vol. 45 No. 9, pp. 1094-103. Robins, D.L. and Dumont-Matthieu, T.M. (2006), ‘‘Early screening for autism spectrum disorders: update on the modified checklist for autism in toddlers and other measures’’, Journal of Developmental and Behavioral Pediatrics, Vol. 27 No. 2, pp. 111-9. Rutter, M. (2005), ‘‘Aetiology of autism: findings and questions’’, Journal of Intellectual Disability Research, Vol. 49 No. 4, pp. 231-8. Rutter, M. (2009), ‘‘Commentary: fact and artefact in the secular increase in the rate of autism’’, International Journal of Epidemiology, Vol. 38, pp. 1238-9. Rutter, M. (2011), ‘‘Progress in understanding autism: 2007-2010’’, Journal of Autism and Developmental Disorders, Vol. 41 No. 4, pp. 395-404. Sanders, J.L. (2009), ‘‘Qualitative or quantitative differences between Asperger’s disorder and autism? Historical considerations’’, Journal of Autism and Developmental Disorders, Vol. 39, pp. 1560-7. Scottish Intercollegiate Guidelines Network (2007), Assessment, Diagnosis and Clinical Interventions for Children and Young People with Autism Spectrum Disorders: A National Clinical Guideline, NHS Scotland, Edinburgh, available at: www.sign.ac.uk/pdf/sign98.pdf Skuse, D., Warrington, R., Bishop, D., Chowdhury, U., Lau, J., Mandy, W. and Place, M. (2004), ‘‘The developmental, dimensional and diagnostic interview (3Di): a novel computerized assessment for autism spectrum disorders’’, Journal of the American Academy of Child and Adolescent Psychiatry, Vol. 43 No. 5, pp. 548-58. Stone, W.L., Coonrod, E.E., Turner, L.M. and Pozdol, S.L. (2004), ‘‘Psychometric properties of the STAT for early autism screening’’, Journal of Autism and Developmental Disorders, Vol. 34 No. 6, pp. 691-701. Williams, J.G., Higgins, J.P.T. and Brayne, C.E.G. (2006), ‘‘Systematic review of prevalence studies of autism spectrum disorders’’, Archives of Disorders in Childhood, Vol. 91, pp. 8-15. Williams, J.G., Allison, C., Scott, F.J., Bolton, P.F., Baron-Cohen, S., Matthews, F.E. and Brayne, C. (2008), ‘‘The childhood autism screening test (CAST): sex differences’’, Journal of Autism and Developmental Disorders, Vol. 38 No. 9, pp. 1731-9. Wing, L. (1981a), ‘‘Asperger’s syndrome: a clinical account’’, Psychological Medicine, Vol. 11 No. 1, pp. 115-29. Wing, L. (1981b), ‘‘Sex ratios in early childhood autism and related conditions’’, Psychiatry Research, Vol. 5 No. 2, pp. 129-37. Wing, L. and Gould, J. (1979), ‘‘Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification’’, Journal of Autism and Developmental Disorders, Vol. 9 No. 1, pp. 11-29.

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Wing, L., Gould, J. and Gillberg, C. (2011), ‘‘Autism spectrum disorders in the DSM-V: better or worse than in the DSM-IV?’’, Research in Developmental Disabilities, Vol. 32 No. 2, pp. 768-73. Wing, L., Leekam, S., Libby, S.J., Gould, J. and Larcombe, M. (2002), ‘‘The diagnostic interview for social and communication disorders: background, inter-rater reliability and clinical use’’, Journal of Child Psychology and Psychiatry, Vol. 43, pp. 307-25. Woodbury-Smith, M.R., Robinson, J., Wheelwright, S. and Baron-Cohen, S. (2005), ‘‘Screening adults for Asperger syndrome using the AQ: a preliminary study of its diagnostic validity in clinical practice’’, Journal of Autism and Developmental Disorders, Vol. 35 No. 3, pp. 331-5. WHO (1993), International Classification of Diseases and Related Health Problems, 10th ed., World Health Organisation, Geneva. WrongPlanet.net (2009), ‘‘They plan to delete Asperger from DSM 5’’, available at: www.wrongplanet. net/postt107290.html (accessed 24 August 2011).

Corresponding author Greg Pasco can be contacted at: [email protected]

To purchase reprints of this article please e-mail: [email protected] Or visit our web site for further details: www.emeraldinsight.com/reprints

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Feature Intervention in autism: a brief review of the literature Richard Mills and Stephen Marchant

Richard Mills is a Director of Research at Research Autism, Bristol, UK. Stephen Marchant is a Student of the Tizard Centre, University of Kent, Canterbury, UK.

Abstract Purpose – There are many treatments and interventions available to families and carers of children with autism, many without any solid evidence base. This paper aims to present and discuss the literature on some of the commonly used and better researched interventions. Design/methodology/approach – Research literature drawing on systematic reviews in particular, where available, was collated and summarised under the subheadings of psycho-educational, psycho-pharmacological, and complementary interventions or therapies. Findings – There are very few interventions that have a solid research base. Even those with the strongest evidence base, such as early intensive behavioural intervention, have not necessarily been found to have a universally positive impact. Recent studies have been methodologically stronger, but there are still many weaknesses in the research to date. Originality/value – This paper attempts to provide a balanced and independent view of the literature on different interventions for autism. Keywords Autism, Intervention, Review, Learning disabilities, Intellectual disabilities, Medical treatment Paper type Literature review

Introduction One of the most daunting challenges faced by parents and professionals working with children or adults with autism is knowing which of the countless number of treatments or intervention will be best. The term autism[1] describes a spectrum of neurodevelopmental conditions, present from very early life, which disrupt the development of social behaviour and communication. The condition persists throughout life and co-occurring neurological or psychological difficulties are common. Despite advances in our understanding of autism symptoms, the causes remain largely unknown and the most effective interventions remain elusive. Of the many interventions and services currently in use relatively few have been tested scientifically (Howlin, 2010) and Mills and Wing (2005) noted that in many cases the treatments proposed are determined more by the interests and belief system of the therapist, than the condition of the child. An internet survey in 2006 provided some insight into the type and number of interventions parents were using with their children with ASD. They found that on average, depending on the type of ASD diagnosis, children were currently receiving between four and six different interventions and had tried between seven and nine (Goin-Kochel et al., 2007). This may be partly due to a lack of accessible objective information and an excess of misinformation. It is also probably related to the inconclusive nature of the available research. As we have yet no definitive way of telling which child will benefit from which therapy or treatment, parents are likely to try a variety of approaches to ascertain which, if any, are beneficial for their child.

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DOI 10.1108/13595471111172822

This paper presents a review of some of the literature on some of the more prominent interventions, using the categories of intervention noted by Charman and Clare (2004): psycho-educational, psycho-pharmacological, and complementary. This is not intended as a systematic review although the papers used in this review have been identified as part of a much larger systematic review. This paper will focus on presenting the literature on some of the interventions which have received more attention from the research world, drawing on systematic reviews, and meta-analyses where they exist. Psycho-educational interventions Many of the interventions in this category are based on behavioural theory that has its origin in work by psychologist B.F. Skinner. There are a variety of techniques used, but primarily psycho-educational interventions aim to change behaviour and teach children and adults new life skills and promote their ability to learn. Early intensive behavioural intervention (EIBI) is one of the more commonly researched interventions and there have been a number of recent reviews looking at bringing together this research. Cognitive behaviour therapy is another example of a psycho-educational intervention, which is used at any age. Approaches such as Treatment and Education of Autistic and Communication handicapped children (TEACCH) have been used very widely in many contexts, with some evaluation. There have also been interventions focused specifically on social skills, others on communication skills. Early intensive behavioural intervention. There have been a number of recent literature reviews exploring the potential benefits of EIBI. Eldevik et al. (2009) identified nine studies that met their inclusion criteria. They selected studies with comparison/control groups, collected raw data from the original authors and used the following precise definition of EIBI (which they took from Green et al., 2002): B

Intervention is individualised and comprehensive, addressing all skills domains.

B

Many behaviour analytic procedures are used to build new repertoires and reduce interfering behaviour (e.g. differential reinforcement, prompting, discrete-trial instruction, incidental teaching, activity-embedded trials, task analysis, and others).

B

One or more individuals with advanced training in applied behaviour analysis and experience with young children with autism directs the intervention.

B

Normal developmental sequences guide the selection of intervention goals and short-term objectives.

B

Parents serve as co-therapists for their children.

B

Intervention is delivered in a one-to-one fashion initially, with gradual transitions to small-group and large-group formats when warranted.

B

Intervention typically begins at home and is carried over into other environments (e.g. community settings), with gradual, systematic transitions to pre-school, kindergarten, and elementary school classrooms when children develop the skills required to learn in those settings.

B

Programming is intensive, is year round, and includes 20-30 hours of structured sessions per week plus informal instruction and practice throughout most of the children’s waking hours.

B

In most cases, the duration of the intervention is two years or more.

B

Most children start intervention in the preschool years when they are three to four years of age.

Eldevik et al. were able to complete a meta-analysis based on effect size for IQ and adaptive behaviour. They found that there was a large effect size for change in full-scale IQ and a moderate effect size for change in adaptive behaviour across the nine studies. They highlighted ‘‘some serious limitations’’ with the meta-analysis, the most serious being the quality of the studies reviewed. One of the issues with the studies reviewed was a lack of random assignment of participants to the treatment group. In addition, Eldevik et al. drew attention to the lack of studies that compare EIBI with other defined approaches and noted

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that there were substantial differences in the level of supervision and training between the EIBI groups and the comparison group. Despite these limitations, they concluded that their results ‘‘support the clinical implication that EIBI at present should be an intervention of choice for children with ASD’’. Although response to EIBI has been found to be largely positive, there are substantial variations between children. A minority of children respond very well, but the majority of children respond modestly and some fail to make any progress. Howlin et al. (2009) identified 11 studies that met inclusion criteria. Four studies showed a strong positive correlation between the participants’ initial IQ and favourable outcome. There were seven studies that detailed initial language level and in four of these, language level was positively correlated with improved outcome. Eldevik et al. (2010) combined participant data on 453 children from across many studies into an intervention group (309 children), a comparison treatment group (39 children) and a control group (105 children). The results of their analysis showed that more children receiving EIBI achieved a reliable change[2] in IQ (29.8 percent) compared with 2.6 percent in the comparison group and 8.7 percent in the control group. The EIBI group also showed a reliable change in adaptive behaviour (their day to day functioning) of 20.6 percent, again greater than the comparison group (5.7 percent), and control group (5.1 percent). Eldevik et al. point out that these results compare favourably with common psychological treatments for disorders such as depression and obsessive compulsive disorders. There was also a positive relationship between IQ and adaptive functioning at intake to the intervention and gains in adaptive behaviour. In addition, high intensity of intervention (36 þ hours per week) predicted gains in both IQ and adaptive behaviour in the EIBI group. Eldevik et al. acknowledged that combining participants receiving different EIBI programmes may be aggregating quite different interventions. Not all recent reviews have reported gains for those receiving behavioural interventions. Spreckley and Boyd (2009) conducted a systematic review and meta-analysis examining the effectiveness of ‘‘applied behavioural intervention’’ and concluded that this approach was no more effective than ‘‘standard’’ treatment across all outcome measures (IQ, expressive language, receptive language, and adaptive behaviour). However, of the 13 studies reviewed, only six met the quality criteria and only four included enough data to be included in the meta analysis. In addition variability across individuals and studies regarding treatment and a lack of clarity about what constituted ‘‘standard’’ treatment meant that the strength of this review is limited. There have also been a number of critiques of EIBI, both by people with autism themselves, and also by researchers and practitioners working in the field. Shea (2004) critically reviewed the literature on early intensive behaviour intervention and concluded that the methodological weaknesses found in much of the research published at the time, meant that it was not possible or sensible to draw strong conclusions regarding the universal appropriateness or substantial impact of EIBI. In particular, she concludes that the claim of a 47 percent recovery rate from the early studies by Lovaas and colleagues, was misleading and inaccurate. Lack of randomisation to treatment groups, variability in assessment methods, variability in environments and treatment fidelity, among other limitations, have made it difficult to systematically evaluate the impact of EIBI. Whilst it is clear from research that some children do benefit, the universal applicability of such an intense early intervention for all children with autism is as yet without a solid research basis. Cognitive behavioural therapy (CBT). CBT aims to change the way an individual thinks about and responds to their emotions. A number of studies provide evidence that it may be useful for addressing anxiety and anger problems. Sofronoff et al. (2005) conducted a randomised controlled trial of CBT for anxiety in children with Asperger syndrome. The study used 71 children aged between ten and 12 years and the presence of anxiety was confirmed with a parent report via an interview. The participants were randomly assigned to child only intervention, child and parent intervention or waiting list control group. Both intervention groups showed statistically significantly results at follow up with decreases in parent

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reported anxiety symptoms and increases in the child’s ability to generate positive strategies in situations that provoked anxiety. Results suggested the addition of parent intervention added to the benefits. Chalfant et al. (2007) found that children with high functioning ASD, who received CBT for anxiety achieved significant reductions in their anxiety as measured by teacher report, parent report, and self-report when compared to matched controls (who were on a waiting list for treatment). A recent but small pilot study by White et al. (2009) worked with four adolescents with ASD and co-morbid anxiety. The intervention used a combination of CBT, parent education and group social skills training, and assessed anxiety and social function. Benefits were reported in reducing anxiety in three of the four subjects and improving social skills in all subjects. Not all results were statistically significant and the authors noted that this may have been the result of participants under reporting their anxiety at outset. Some of the results were maintained at six-month follow up with two participants continuing to no longer meet the criteria for an anxiety disorder. CBT has also been used to teach anger management in individuals with ASD. Sofronoff et al. (2007) conducted a randomised controlled trial using CBT to teach anger management to children with Asperger syndrome. When the CBT group were compared to the controls, parent reports indicated a significant decrease in episodes of anger and a significant increase in their confidence in being able to manage anger in their child following intervention. TEACCH (Treatment and education of autistic and communication handicapped children). In this intervention, the organisation of the physical environment, visual timetables and visually structured activities are emphasised in what is often called ‘‘structured teaching’’ (Myers and Johnson, 2007). The intervention does not have a wide empirical base, but has been evaluated both in a home setting and as an out-of-home educational programme (Ozonoff and Cathcart, 1998; Panerai et al., 2002). In addition, the effectiveness of some of the components of a TEACCH programme have been shown to have an empirical base (Mesibov and Shea, 2010). Published work also details the use of the programme in supported employment (Keel et al., 1997). As Jordan and Jones (1999) point out in their review, some of the studies evaluating TEACCH had methodological issues such as not having control groups or not being conducted independently of the implementation of the programme (i.e. evaluated by the people who were implementing the TEACCH programme). However, from the studies that do exist, the evidence appears to point to structured teaching (the basis of the TEACCH approach) as having beneficial effects in reducing challenging behaviour, improving communication and social interaction, and improving sensori-motor skills and independence (Mesibov, 1997; Panerai et al., 1998, 2002; Person, 2000; Ozonoff and Cathcart, 1998; Schopler et al., 1981; Siaperas and Beadle-Brown, 2006). Interventions focusing on improving social skills. White et al. (2007) conducted a review of group-based social skills programmes for school-aged children and adolescents with ASD. The intervention entails the teaching of specific skills such as initiating conversations or maintaining eye contact. The group-based nature provides opportunities to practice the skills taught. The review yielded 14 studies, five of which included a comparison group but with no random assignment. In addition, a variety of outcome measures were used making comparison difficult. Inadequate measurement of social skills and deficits, small and poorly characterised samples, little examination of generalisation of skills learnt were also noted. In their conclusion, White et al. say that the data regarding this kind of intervention is preliminary and suggest that it is under-studied, but warrants further investigation as many of the studies demonstrate that target skills can be improved in youth with ASD. They suggest that there is a need to develop standardised curricula for the intervention, a need for randomised controlled trials, and the identification of a primary outcome measure. Bellini and Akullian (2007) conducted a meta-analysis of video modelling and video self-modelling interventions for children and adolescents with ASD to determine their effects on social-communication skills, functional skills, and behavioural functioning. In video modelling, the participant imitates a behaviour that has been demonstrated in a video. In video self-modelling, the participant is videotaped performing a behaviour and is then given

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the chance to practice the behaviour by further imitation. In total, they included 23 studies in the review, with a total of 73 participants. The methodology used in this review (a method called percentage of non-overlapping data points) was that which Scruggs and Mastropieri (2001) considered preferable in the meta-analysis of single-subject experiments (Scruggs and Mastropieri, 2001 in Bellini and Akullian, 2007). However, none of the differences were statistically significant. High-quality rigorous research is needed to ascertain whether the intervention is effective under controlled conditions. Finally, Karkhaneh et al. (2010) conducted a systematic review of literature that examined the use of Social Storiese to improve social skills in children with ASD. A Social Storye gives a description of a situation, promotes understanding of it and suggests appropriate behaviour. They searched for published and unpublished work and only included controlled trials, in an attempt to build on previous literature reviews that have mostly focussed on single-case designs. They found six trials, four of which they identified as being randomised controlled trials and two as clinical control trials. The studies had been published between 2002 and 2006; all were dissertations and used a total of 135 participants, with a median sample size of 20. The participants were between four and 14 years old and median age was ten years. Five of the six studies reported statistically significant differences between the Social Storye group and the comparison group. Benefits were seen for a variety of outcomes including game playing skills, story comprehension, generalised social comprehension, comprehension of facial emotion, social skills, aggressive behaviour, and communication skills. Karkhaneh et al. identify a number of limitations in the evidence considered. Amongst these were weak treatment effects, confounding factors such as additional interventions and poor study design during the test period which, they stated, cast some doubt on whether the beneficial effect is actually a result of the Social Storye. In addition, the studies assessed were all dissertations and as such have not been peer reviewed. However, as controlled studies, the authors felt they were a substantial improvement from previous reviews that have presented evidence based on single-case designs. They also emphasised the lack of data regarding generalisation and maintenance of newly acquired skills. Communication-based interventions. The most widely available communication-based intervention is probably the Picture Exchange Communication System (PECS). PECS was developed as a communication-training intervention for children with ASD that teaches them to initiate communication. It is based on behavioural methods to help children use symbols/pictures to communicate, combining signs, and symbols with the spoken word to help develop speech. Flippin et al. (2010) conducted a meta-analysis of available research from both controlled and uncontrolled research to assess the effectiveness of PECS. They found three controlled studies (rating one of good quality) and eight uncontrolled studies (including seven that they assessed as being of at least adequate quality). Their meta-analysis showed that there was a medium effect for improving communication outcomes but a negligible effect for speech outcomes. They noted that results for improving speech outcomes varied substantially across the studies and concluded that PECS was a ‘‘promising’’ intervention but that research has not yet consistently demonstrated the effectiveness of PECS in increasing communication, in particular verbal communication. Goldstein (2002) reviewed studies on ‘‘communication interventions’’ for children with autism. He found nine studies, which examined the use of sign language. Although some of the studies were small (several were case studies and only two were randomised controlled trials) he concluded that the findings from these studies were consistent. Results showed that sign or total communication training (a system that makes use of sign, speech, and visual aids, depending on the particular needs and abilities of the child) resulted in faster and more comprehensive learning of vocabulary than speech training alone. Children with limited communication seem to benefit most, whilst those with good verbal imitation skills were more likely to display speech production in addition or instead of sign production. Parent-mediated communication-focussed treatment (PACT) in children with autism. In this intervention, parents and children attended a clinic for one-to-one sessions with a therapist to promote parent sensitivity and responsiveness to child communication with the use of video feedback. A pilot study conducted by Aldred et al. (2004) showed significantly

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improved outcomes in terms of autism symptomology (measured using ADOS), particularly in reciprocal social interaction, but also in expressive language. Following the success of this pilot, Green et al. (2010) conducted a large, multi-site, randomised controlled trial study. In total, 152 participants were recruited and 77 were randomly assigned to PACT and 75 assigned to a treatment as usual group. Unlike the pilot study, they found no significant difference in ADOS-G scores between the PACT and control groups following intervention. However, the intervention did significantly improve parent-child communication. Significant results were achieved in parental synchronous response to child, child initiations with parent and for parent-child shared attention. In interpreting the results, Green et al. considered the fact that larger trials generally produce smaller effects. They also questioned whether the primary outcome measure (ADOS-G) was sensitive enough to detect changes since it has been designed as a diagnostic tool. Other parent mediated or focused interventions. One of the most commonly accessed and publicly funded interventions in autism has been the Earlybird programme which focuses on helping parents following diagnosis to understand autism and how it affects their child, to develop communication and simple behaviour management strategies to pre-empt and if possible prevent challenging behaviour arising. The strategies taught bring together the SPELL framework, elements of the TEACCH approach and PECS. Families receive training and support including home visits and video work and usually a small number of families take part in the programme for three months. A pilot study by Hardy (1999) examined the outcomes for parents involved in the program and found that parents were less stressed, perceived their child more positively, and reduced the complexity of their language during interactions with their child following the program. These results were replicated in a larger study (Engwall and Macpherson, 2003), involving 119 families of children with autism and again in a study of 54 families in New Zealand (Anderson et al., 2006). The latter study also found that parents reported that they were better able to manage behaviour better, however, the findings were not published in the peer-reviewed literature. Although the results of these evaluations provide preliminary evidence for the efficacy of the program in supporting families, a large randomised control trial is needed. One intervention not covered in detail here but worth mentioning as it is used by many families in the UK and in the USA, is the Son-Rise Options Programme. This home-based programme focuses on improving the social interaction and reducing rigidity in the child, through one-to-one sessions in a low-arousal playroom. Training for parents varies in intensity from start-up training for families through to a one-week intensive programme in the USA. The programme claims substantial gains for children in language, eye contact and attention span for those who attend the intensive programme in the USA. However, there has been very little formal or independent evaluation of the programme in terms of short or long-term gains for the children. On the negative side, Howlin (1997) found that teachers reported that children who have undergone the Son-Rise Programme have difficulty returning to regular school routines and ritualistic behaviours are more difficult to deal with. Williams and Wishart (2003) conducted a longitudinal investigation of family experiences and found that there were more drawbacks than benefits but that family stress was not significantly affected. Williams (2006) reported that fidelity to the published programme was often not achieved. Pharmacological interventions Pharmacological interventions (drugs) have often been used in people with autism. There is not a drug that in itself reduces autism symptoms or their impact and as such, the research on drug-based interventions has focused on the impact of drugs on challenging behaviour, on anxiety and on other specific issues or conditions associated with autism. This section will briefly review some of the literature on the most commonly used (and evaluated) drug treatments. Table I summarises the findings on the two drug-based treatments which have received most research – risperidone (an anti-psychotic medication used to manage challenging behaviour) and selective serotonin reuptake inhibitors (SSRIs) used for conditions such as depression and anxiety.

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j Usage Anti-psychotic

Depression and anxiety

Drug treatment

Risperidone

Selective serotonin reuptake inhibitors (SSRIs)

Williams et al. (2010)

Jesner et al. (2007)

Review author

Findings from review

Meta-analysis showed statistically significant improvements in: Irritability Social withdrawal Hyperactivity Stereotypical behaviours Self-injury Aggressive and destructive behaviour Also found significant weight gain compared to placebo control group Seven randomised control trials Fenfluramin discontinued due to looking at: Fluoxamine (two studies) serious side effects Fenfluramin (two studies) Fluoxetine Significant improvement on the (two studies) Citalopram (one study) clinical global impression scale and 271 participants (children and obsessions, compulsions and adults) aggression reported in two studies (one of fluoxamine and one of fluoxetine, both with adults) Citalopram results in reduced irritability in children but more adverse side effects

Three randomised blind trials 211 participants aged five to adults

Number of studies reviewed and participants

Table I Summary for findings on pharmacological treatments in autism

Different diagnostic criteria used across studies Small sample sizes in some studies Different outcome measures used

Only three studies of sufficient quality and small sample Short duration (eight-12 weeks) so no data on long-term efficacy Side effects often reported, most common being weight gain

Limitations

As can be seen, there was some evidence from the small number of studies of high enough quality to be included in the review by Jesner et al. (2007) that risperidone did help to reduce a number of different types of challenging behaviour, but that this was often accompanied by side effects such as nasal congestion, weight gain, and drowsiness. Weight gain was the most common side effect and those receiving risperidone gained significantly more weight than those not using it in one study. The review by Williams et al. (2010), which included four different types of SSRIs, one of which has since been discontinued due to serious side effects, found limited changes following use of these drugs. Three studies did find some improvements in some outcomes but the findings were not consistent. Williams et al. (2010) concluded that ‘‘there is no evidence of effect of SSRIs in children’’ and that there is only ‘‘limited evidence of the effectiveness of SSRIs in adults’’. A variety of other drugs are prescribed to people with autism (Leskovec et al., 2008). For example, some of the first generation anti-psychotics such as Haloperidol have been researched and shown to be of benefit for managing challenging behaviour, but their side-effect profile make them frequently unacceptable for longer-term use (Jesner et al., 2007). The evidence for effectiveness of other drugs is more limited and has been recently reviewed by Canitano and Scandurra (2011). These other drugs include anti-psychotics such as Aripripazole and Olanzapine, which have both been shown to be useful in reducing challenging behaviour in children and adolescents with ASD but with some side-effects such as weight gain and sedation; methylphenidate and atomoxetine (used to address attention deficit with hyperactivity disorders associated with ASD) which were found to have some benefits but many unwanted side-effects in children with Autism, such as irritability, lethargy, sadness, and social withdrawal and, in the case of atomoxetine, increased heart rate and decreased weight. Canitano and Scandurra also looked at the evidence for the use of anti-epileptic medications (also sometimes used as mood stabilizers as well as for treating epilepsy in ASD) and found that a few trials have demonstrated some limited benefits, but that much more research was needed. Finally, after positive anecdotal reports, secretin (a gastro-intestinal hormone) was subject to a number of randomised trials but a review of 13 studies, many of which had methodological problems, by Williams et al. (2005) found no evidence that secretin was effective across a range of outcomes.

Complementary and alternative therapies Nutritional therapies There are a number of nutritional therapies that have been explored with regard to their benefits for children and adults with autism. Some of these have taken the form of diets eliminating particular foods (such as gluten free and casein free diets) whilst others take the form of supplements such as Vitamin B6 and Magnesium or Omega-3 fatty acids. Table II below summarises the findings from the literature reviewed. As can be seen from Table II the research on nutritional therapies is also limited both in terms of the studies conducted and the findings. Some limited benefits were found for Vitamin and Omega 3 supplements but with no consistency in the findings. In terms of Gluten-free and casein-free diets, again some benefits were found on some outcomes but from just a few small studies. A further review by Mulloy et al. (2010) using slightly broader inclusion criteria, and therefore, including more studies, reached broadly the same conclusions as Millward et al. (2008), i.e. that there is insufficient evidence to recommend the use of gluten and casein free diets in people with autism more generally at present. Mulloy et al. (2011) commented on a recent randomised control trial by Whitley et al. (2010), which appeared to show benefit in those receiving the gluten and casein free diet. However, they highlighted a number of concerns with the study including issues with data analysis and participant attrition, leading them to reiterate their previous conclusions.

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Dietary supplement

Diet

Nutritional therapy

Vitamin B6/magnesium

Omega-3 fatty acids

Gluten-free/casein-free diets

Millward et al. (2008)

Bent et al. (2009)

Nye and Brice (2002)

Review author

Findings from review

Only one study (involved eight people with Asperger syndrome or PDD-NOS) showed statistically significant effect – treatment group showed significant improvement in verbal IQ and social functioning Six studies reviewed but only one was a No significant change found in the randomised control trial randomised control trial on challenging behaviour Uncontrolled studies seemed to show benefits Two randomised controlled trials One study showed significant changes in some outcomes whilst on a combined gluten and casein free diet (overall autistic traits, social isolation, overall ability to communicate and interact) but not in other outcomes

19 studies reviewed only three had randomly assigned participants to treatment group 28 in the three studies included

Number of studies reviewed and participants

Table II Summary of research reviewed on nutritional therapies

Small sample size Much of data skewed and not included

Small sample size Limited measures of outcome

Small number of studies included Small sample size

Limitations

Other complementary and alternative therapies There are a number of other complementary and alternative therapies, but most do not have a strong evidence base and in the case of some such as chelation therapy have been shown to have extremely negative effects (Baxter and Krenzelok, 2008). Where research does exist for some of these, it does not in general support the claims of the approaches. Jepson et al. (2011) found no statistically significant difference between treatment and control groups across a range of outcome measures exploring hyperbaric oxygen therapy (the medical uses of oxygen in concentrations greater than is found in the atmosphere). Mostert (2010) reviewed the literature on facilitated communication and concluded that this intervention is not empirically supported. There are a small number of complementary and alternative therapies that have attracted more research. Animal-assisted therapy (AAT) AAT is the use of an animal (usually a dog) to reduce the symptoms of ASD. Nimer and Lundahl (2007) conducted a meta-analysis of AAT for a variety of conditions. They reviewed 250 studies of which 49 met their criteria for inclusion although none of them were randomised control trials. They found that there appeared to be consistent benefits across studies and individuals – including positive effects on autism symptoms, medical difficulties, behaviour problems, and emotional well-being. However, the lack of control groups means that it is difficult to be sure that the effects are due to the therapy. Sensory integration therapy (SIT) SIT is probably best described as a treatment approach rather than a single intervention. Therapists attempt to alter sensory processing by exposing an individual to sensory experiences. Techniques include swinging, massage and the use of weighted objects such as weighted vests. A small controlled trial using qigong massage in children with autism showed statistically significant benefits in sensory impairment and social interaction (Silva et al., 2007), and consequently a qigong sensory training program was developed and piloted (Silva et al., 2008). The pilot produced results suggestive of benefit but they were not statistically significant. Silva et al. (2009) conducted a larger randomised controlled trial on 46 children, which showed statistically significant improvements in social skills and language and decreases in ‘‘autistic’’ behaviour. Case-Smith and Arbesman (2008) describe two other randomised controlled trials using massage in children with autism that also report benefits (Escalona et al., 2001 and Field et al., 1997 in Case-Smith and Arbesman, 2008). Other SIT interventions have not yet been the subject of randomised controlled trials and as such evidence for these is somewhat weaker (Case-Smith and Arbesman, 2008). Auditory integration training (AIT) AIT is an intervention intended to address abnormal sound sensitivity in ASD. It involves listening to music that has been modified by filtering and modulation. A Cochrane review by Sinha et al. (2004) examined the use of AIT in people with ASD. They included six randomised trials in their review, three of which reported no benefit of AIT over control. The other three trials showed improvements in challenging behaviour (measured by total mean scores and subscale scores for the aberrant behaviour checklist (ABC). Sinha et al. (2004) question the validity of total mean scores for ABC as a useful outcome measure and say that according to the instrument’s developer, it is ‘‘not a clinically significant outcome’’. They conclude that based on the available evidence AIT should be viewed, at best as an ‘‘experimental treatment’’. Other technology-based interventions have also been evaluated – for example, there have been many studies looking at the use of computers to teach a range of skills and abilities, from communication and social skills to body awareness and theory of mind. Recent developments have included the use of virtual reality environments, Wii technology, and smart phones. However, almost all of these studies are small-scale studies with only one randomised control

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trial exploring the impact of a computer programme to teach emotion recognition and prediction (Silver and Oakes, 2001), which found that short-term gains were found in the treatment group. There is currently no systematic review of the studies that do exist.

Conclusion This brief paper presents some of the recent literature on the most commonly researched (and probably most commonly used) interventions in autism. It has focused more on defined interventions and approaches used in a clinical or educational context, rather than frameworks or approaches for working with people on an everyday basis to support quality of life more generally. As can be seen from the number of systematic or meta-analyses available, the interventions with the most research have generally been EIBI, some dietary interventions and some of the pharmaceutical interventions. These have traditionally been the areas of research that have had access to more funding. However, the evidence base for even the most well-researched interventions is still fairly weak. Even systematic reviews of some of the more established interventions have been criticised for methodological weaknesses (Ospina et al., 2008). This does not necessarily mean that the interventions reviewed do not have a positive impact on outcomes for people with autism, however, the evidence base for most interventions is not well established. Recommendations regarding future research have been published in the recent past and these should serve as a useful guide (Smith et al., 2007; Howlin et al., 2009). Interventions that seem promising on the basis of uncontrolled trials should be subject to more rigorous research. In particular, there is still a need for high quality multi-sited, randomised controlled trials. The recently published PACT trial (Green et al., 2010) provides a useful benchmark in terms of quality. However, it should also be noted that some interventionists question, the usefulness of the stringent research guidelines such as those outlined by the American Psychological Association (APA) in the 1980s and the guidelines published by Smith et al. (2007), both for single case or multiple baseline studies and for treatment trials. Table III summarises the criteria proposed by Smith et al. as well as the original guidelines set out by APA taskforce in 1985. Mesibov and Shea (2010) argue for a personalised approach utilising the evidence-based practice model that starts with the individual and seeks to meet their needs through the application of a variety of methods. This differs from evidence-supported treatment, which starts with the treatment and sees how well it works with particular populations or individuals. Too often in practice it is the latter model that is used. The National Professional Development Centre on Autism suggests that evidence is important but recognises some of the limitations on current practice: While many interventions for autism exist, only some have been shown to be effective through scientific research. Interventions that researchers have shown to be effective are called evidence-based practices. Practices are most effective when carefully matched to a learner’s specific needs and characteristics.

Whilst there is no doubt that well-designed randomised controlled trials are of immeasurable value when dealing with a fairly homogenous group, their value when designing interventions for a very heterogeneous group like the population with ASD is more questionable. Bearing this in mind, it is not surprising that even in the most validated of interventions like EIBI, substantial positive results are only found for a minority of children. The arrival of the autism self advocacy and neurodiversity movements challenges many of the negative images or pejorative descriptions of autism, often disputing the rationale for specific forms of intervention, particularly drugs, biomedical, and some behavioural methods. Latterly, this movement has played an increasingly significant role in informing public policy and in educating the professional community. Autism is sometimes thought of less as a condition that needs to be ‘‘cured’’ or even compensated for, but as a difference that needs to be accommodated. Whilst this is likely to be true in part, the fact that it might be possible to reduce the severity of the impact of autism through intervention, and therefore,

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Table III Criteria for evaluating the quality of studies of intervention in autism Source

Recommended criteria

APA taskforce (1985) Criteria for scientific demonstration of treatment effectiveness

Random assignment Explicit inclusion and exclusion criteria (e.g. age group, gender, language ability, IQ level, etc.) Explicit length and frequency of intervention If for people with autism all must meet same diagnostic criteria and no dual diagnosis Use of a single-case experimental design such as reversal or multiple baseline Specific inclusion and exclusion criteria for enrolment in the study along with documentation of drop-outs and intervention failures Well-defined samples of participants in the study (i.e. standardised diagnostic tests to confirm diagnosis, standardised tests of intelligence and adaptive behavior to document developmental level) Replication of intervention effects across three or more participants Assessment of generalisation of intervention effects to at least one other setting or maintenance of effects over time Measurement of outcome conducted blind to the purpose of the study Random assignment of participants to intervention and control groups Manuals for all groups A recruitment plan to obtain a representative sample Clearly stated inclusion and exclusion criteria Careful characterisation of participants at entry into the study (e.g. diagnosis, symptom severity, and level of functioning) Systematic monitoring of intervention fidelity Clear rationale for the choice of outcome measures and, especially in studies of comprehensive intervention packages, inclusion of measures that assess core features of autism such as reciprocal social interaction Use of outcome measures collected blind to intervention group Appropriate statistical analyses of differences between groups after intervention, effect size and clinical significance of differences, and variables that may influence outcomes (i.e. mediators and moderators)

Smith et al. (2007, Table 2, p. 358) Quality indicators in single-case research on psychosocial interventions for individuals with ASD

Smith et al. (2007, Table 4, p. 361) Quality indicators in clinical trials on psychosocial interventions for individuals with ASD

make it easier for children and adults with autism to have a better quality of life, means that the development of effective evidenced based interventions remains important. Therefore, as well as moving forward with well-designed RCTs, it is necessary to undertake person-centred evidence-based practice to support people in a variety of settings, where the approaches used are designed around the individual and incorporate a variety of validated techniques dependent on their abilities and preferences. Working within the SPELL framework (Beadle-Brown et al., 2009; Beadle-Brown and Mills, 2010) and using person-centred approaches such as active support, positive behaviour support and total communication to support individuals to achieve their potential should remain a priority for services and schools. Although there is as yet no strong research evidence of whether intervention early (i.e. in the pre-school years) produces more long-term benefits than intervention delivered in later childhood or indeed in adulthood, it remains logical, given what is known about children’s development, to provide access for young children with or suspected of having an ASD to an individualised autism-friendly intervention programme, which makes best use of what is at least established good practice to help children learn the skills and develop strategies that will help them in later life and promote the possibility of better outcomes for themselves and their family.

Notes 1. The term autism here is used to refer to the whole spectrum including people with Asperger syndrome. It is used interchangeably with autism spectrum disorders (ASD). 2. Reliable change describes the amount by which an outcome measure needs to change before it can be assumed with 95 percent accuracy that the change cannot be accounted for by the variability of scores in the sample and/or measurement error.

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Panerai, S., Fernante, L., Caputo, V. and Impellizeri, C. (1998), ‘‘Use of structured teaching for treatment of children with autism and severe profound mental retardation’’, Education and Training in Mental Retardation and Developmental Disabilities, Vol. 33, pp. 367-74. Person, B. (2000), ‘‘Brief report: a longitudinal study of quality of life and independence among adult men with autism’’, Journal of Autism and Developmental Disorders, Vol. 30, pp. 61-6. Schopler, E., Mesibov, G.B., DeVellis, R.F. and Short, A. (1981), ‘‘Treatment outcome for autistic children and their families’’, in Mittler, P. (Ed.), Frontiers of Knowledge in Mental Retardation: Social, Educational and Behavioral Aspects, University Park, Baltimore. Shea, V. (2004), ‘‘A perspective on the research literature related to early intensive behavioural intervention (Lovaas) for young children with autism’’, Autism: The International Journal of Research and Practice, Vol. 8 No. 4, pp. 349-68. Siaperas, P. and Beadle-Brown, J. (2006), ‘‘The effectiveness of the TEACCH approach programme for people with autism in Greece’’, Autism, Vol. 10 No. 4, pp. 330-43. Silva, L.M., Ayres, R. and Schalock, M. (2008), ‘‘Outcomes of a pilot training program in a qigong massage intervention for young children with autism’’, American Journal of Occupational Therapy, Vol. 62 No. 5, pp. 538-46. Silva, L.M., Cignolini, A., Warren, R., Budden, S. and Skowron-Gooch, A. (2007), ‘‘Improvement in sensory impairment and social interaction in young children with autism following treatment with an original qigong massage methodology’’, American Journal of Chinese Medicine, Vol. 35 No. 3, pp. 393-406. Silva, L.M., Schalock, M., Ayres, R., Bunse, C. and Budden, S. (2009), ‘‘Qigong massage treatment for sensory and self-regulation problems in young children with autism: a randomized controlled trial’’, American Journal of Occupational Therapy, Vol. 63 No. 4, pp. 423-32. Silver, M. and Oakes, P. (2001), ‘‘Evaluation of a new computer intervention to teach people with autism or Asperger syndrome to recognize and predict emotions in others’’, Autism, Vol. 5 No. 3, pp. 299-316. Sinha, Y., Silove, N., Wheeler, D. and Williams, K. (2004), ‘‘Auditory integration training and other sound therapies for autism spectrum disorders’’, Cochrane Database of Systematic Reviews, Vol. 1, p. CD003681. Smith, T., Scahill, L., Dawson, G., Guthrie, D., Lord, C., Odom, S., Rogers, S. and Wagner, A. (2007), ‘‘Designing research studies on psychosocial interventions in autism’’, Journal of Autism and Developmental Disorders, Vol. 37 No. 2, pp. 354-66. Sofronoff, K., Attwood, T. and Hinton, S. (2005), ‘‘A randomised controlled trial of a CBT intervention for anxiety in children with Asperger syndrome’’, Journal of Child Psychology and Psychiatry, and Allied Disciplines, Vol. 46 No. 11, pp. 1152-60. Sofronoff, K., Attwood, T., Hinton, S. and Levin, I. (2007), ‘‘A randomized controlled trial of a cognitive behavioural intervention for anger management in children diagnosed with Asperger syndrome’’, Journal of Autism and Developmental Disorders, Vol. 37 No. 7, pp. 1203-14. Spreckley, M. and Boyd, R. (2009), ‘‘Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: a systematic review and meta-analysis’’, Journal of Pediatrics, Vol. 154 No. 3, pp. 338-44. White, S.W., Keonig, K. and Scahill, L. (2007), ‘‘Social skills development in children with autism spectrum disorders: a review of the intervention research’’, Journal of Autism and Developmental Disorders, Vol. 37 No. 10, pp. 1858-68. White, S.W., Ollendick, T., Scahill, L., Oswald, D. and Albano, A.M. (2009), ‘‘Preliminary efficacy of a cognitive-behavioral treatment program for anxious youth with autism spectrum disorders’’, Journal of Autism and Developmental Disorders, Vol. 39 No. 12, pp. 1652-62. Williams, K.R. (2006), ‘‘The Son-Rise Program intervention for autism: prerequisites for evaluation’’, Autism, Vol. 10 No. 1, pp. 86-102. Williams, K.R. and Wishart, J.G. (2003), ‘‘The Son-Rise Program intervention for autism: an investigation into family experiences’’, Journal of Intellectual Disability Research, Vol. 47 Nos 4/5, pp. 291-9.

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Williams, K.W., Wray, J.J. and Wheeler, D.M. (2005), ‘‘Intravenous secretin for autism spectrum disorder’’, Cochrane Database of Systematic Reviews, Vol. 20 No. 3, p. CD003495. Williams, K., Wheeler, D.M., Silove, N. and Hazell, P. (2010), ‘‘Selective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders (ASD)’’, Cochrane Database of Systematic Reviews, Vol. 8, p. CD004677.

Corresponding author Stephen Marchant can be contacted at: [email protected]

To purchase reprints of this article please e-mail: [email protected] Or visit our web site for further details: www.emeraldinsight.com/reprints

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Feature The health of people with autistic spectrum disorders Eric Emerson, Chris Hatton, Richard Hastings, David Felce, Andrew McCulloch and Paul Swift

Eric Emerson and Chris Hatton are both based at the Centre for Disability Research, Lancaster University, Lancaster, UK. Richard Hastings is based at the School of Psychology, Bangor University, Gwynedd, UK. David Felce is based at the Welsh Centre for Learning Disabilities, School of Medicine, University of Cardiff, Cardiff, UK. Andrew McCulloch and Paul Swift are both based at The Foundation for People with Learning Disabilities, London, UK.

This study was funded by the Shirley Foundation and commissioned by the Foundation for People with Learning Disabilities.

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Abstract Purpose – The purpose of this paper is to summarise what is known about the health of people with autism spectrum disorder (ASD). Design/methodology/approach – The paper aims to update the unpublished review and scoping paper undertaken by Swift for the Foundation for People with Learning Disabilities; provide a conceptual framework for understanding the key determinants of the poorer health outcomes experienced by people with ASD; undertake a brief option appraisal of existing sources of data that may be of value in addressing the mortality and morbidity of people with ASD; and establish future research possibilities. Findings – The limited literature suggests higher rates of mortality and morbidity among people with ASD. Originality/value – A simple conceptual framework for understanding the key determinants of poorer health of people with ASD is proposed. Options for studying the mortality and morbidity in ASD using existing data sources are also appraised and recommendations are made for future research in the area. Keywords Autism, Autistic spectrum disorder, Personal health, Mortality, Morbidity, Determinants, Research, Learning disabilities, Intellectual disabilities Paper type Literature review

Introduction Swift (2008) reviewed the literature up to the end of 2007 relating to the mortality of people with autism spectrum disorder (ASD) drawing attention to the limited amount of research that had been undertaken in this area and the variability of results reported. He concluded that the physical and mental health of people with autistic spectrum disorder is poorly understood and there is a lack of evidence about mortality and morbidity among this population. The purpose of the current paper was to: B

update this unpublished review and scoping paper undertaken by Swift for the Foundation for People with Learning Disabilities;

B

provide a conceptual framework for understanding the key determinants of the poorer health outcomes experienced by people with ASD;

B

undertake a brief option appraisal of existing sources of data that may be of value in addressing the mortality and morbidity of people with ASD; and

B

establish future research possibilities.

Recent evidence In order to update the review undertaken by Swift (2008), more recent evidence was identified through a Medline search undertaken in December 2009 covering the period from

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January 2008 to December 2009. The very general search parameters (based on variations of the term of autism, ASD or condition and pervasive development disorders and their acronyms) identified close to 600 papers. However, very few of these related to the health of people with ASD. The majority addressed either the prevalence of ASD (and in particular apparent changes in prevalence over recent decades) or potential genetic/biomedical causes of ASD.

Mortality Only one study addressed mortality rates and causes of death among people with ASD (Mouridsen et al., 2008). This study updated data from a previously published study of mortality in a cohort of 341 Danish individuals with ‘‘variants’’ of ASD (Isager et al., 1999). The updated analyses indicated significantly decreased survival rates among people with ASD with an overall standardised mortality ratio (SMR) of 1.9 (i.e. mortality rates among people with ASD were nearly twice as high as for people in the general population for that age and gender). Of the 26 deaths, eight (31 per cent) were associated with epilepsy, seven (27 per cent) with infectious diseases and six (23 per cent) were from unnatural causes (four accidents, two suicides). While there was no association between intelligence quotient and SMR, SMR were particularly high for women with ASD, a finding also reported in the only other study reporting standardised mortality rates (Pickett et al., 2006; Shavelle et al., 2001).

Health An increasingly robust literature has documented an association between ASD and increased risk of mental health problems including depression, anxiety, attention deficit hyperactivity disorder and conduct issues (Farley et al., 2009; White et al., 2009; Kanne et al., 2009; Simonoff et al., 2008). Recent research has also indicated: B

A two-fold risk of birth defects or congenital abnormalities among children with ASD (Dawson et al., 2009), although this appears to be primarily accounted for by the association between ASD and intellectual disability (Schendel et al., 2009).

B

Significantly increased rates of injury when compared to non-disabled children (Lee et al., 2008), and five times greater rates of sports injuries when compared with other disabled athletes (Ramirez et al., 2009).

B

Significantly better oral health (caries; decayed, missing or filled teeth) when independently assessed and compared to non-disabled children (Loo et al., 2008), but significantly poorer oral health when based on parental report (Kopycka-Kedzierawski and Auinger, 2008).

B

Increasing rates of being overweight through childhood from 17 per cent at aged 2-5 years to 24 per cent at aged 6-11 years (Xiong et al., 2009).

Health care One US study reported that within the population of children with ASD, being poor or of minority ethnic status was associated with reduced access to health services (Liptak et al., 2008).

Summary Recent evidence is consistent with previous reports in suggesting that ASD is associated with increased mortality and increased risk of a range of health problems. While an increasingly robust literature has documented an association between ASD and increased risk of mental health problems, the quality and volume of evidence in all other areas is poor.

A framework for understanding the poorer health outcomes experienced by people with ASD The health inequalities (poorer health and increased mortality) faced by people with ASD as a group and variation in health status among people with ASD are likely to be the result of both biological (including genetic) factors, social determinants of health and probably

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complex interactions between the two. In the following sections, we summarise some of the pathways through which the association between ASD and health may be mediated.

Predominantly biological B

There is a clear association between ASD and an increased risk of intellectual disability, with approximately 50-60 per cent of children with ASD also having an intellectual disability (Baird et al., 2006; van Engeland and Buitelaar, 2008). There is also evidence of associations between ASD and specific syndromes that are additionally associated with intellectual disabilities (van Engeland and Buitelaar, 2008). There is, of course, extensive evidence that people with lower intelligence and people with intellectual disabilities have poorer health than their peers (Krahn et al., 2006; Batty et al., 2007, 2006, 2009; Ouellette-Kuntz, 2005). This, in part, is likely to be due to: the impact of cognitive limitations on health literacy, problem solving and the identification of ill health; and the association between cognitive limitations and communication ability on the communication of ill health and negotiating access to timely and appropriate health care.

B

There is evidence to suggest either genetic or pre-natal associations between ASD and a range of congenital abnormalities (birth defects) including epilepsy, although, as noted above, this may primarily be accounted for by the association between ASD and intellectual disabilities (Dawson et al., 2009; Schendel et al., 2009; van Engeland and Buitelaar, 2008).

B

It could be suggested that the sensory anomalies reported by some people with ASD may be associated with increased risk of exposure to environmental health hazards or reduced capacity to identify ill-health.

B

There exists some very limited evidence to suggest a link between ASD and compromised immune systems and other medical causes (van Engeland and Buitelaar, 2008; Pessah et al., 2008).

B

Finally, the specific behavioural phenotype of ASD (impairments in social interaction, communication and restricted/repetitive behaviours/interests) may be associated with increased risk of exposure to poorer health promoting behaviours (e.g. through restricted/poorer diet) and limitations in negotiating access to timely and appropriate health care.

Predominantly social

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B

There is no association between socio-economic disadvantage and the incidence or prevalence of ASD (Baird et al., 2006; van Engeland and Buitelaar, 2008; Emerson et al., 2009). As such, socio-economic factors cannot account for the poorer health outcomes and increased mortality faced by people with ASD as a group. They may, however, contribute to variation in health status among people with ASD.

B

People with intellectual disabilities (and most likely people with ASD) are at risk of systemic discrimination in access to timely and effective health care (Disability Rights Commission, 2006; Michael, 2008).

B

People with intellectual disabilities and ASD are at risk of exposure to social exclusion (e.g. exclusion from employment) and of exposure to overt episodes of disability-related discrimination. There is now considerable evidence to suggest that exposure to overt episodes of ethnicity-related discrimination (racism) accounts, in part, for the health inequalities faced by people from minority ethnic communities (Williams and Mohammed, 2009; Krieger, 1999; Nazroo, 2003; Gee et al., 2009; Mays et al., 2007). There is also some evidence to suggest that exposure to disability-related discrimination and bullying is associated with poorer health and mental health among people with learning disabilities (Emerson, 2010).

B

Addressing the marginalisation and disempowerment of people with ASD through supporting people to have a voice in and control over their lives may have beneficial effects on health status.

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Combined biological and social B

The poorer mental health of people with ASD (Simonoff et al., 2008) is likely to be due to the combined effects of biological risk (e.g. genetic predisposition) and social risk (e.g. exposure to discrimination and social exclusion). These may result in high stress, low self-esteem and self-efficacy; conditions that increase the risk of both physical and mental ill health.

B

Poorer mental health may, in turn, contribute to poorer physical health, for example though the process of ‘‘diagnostic overshadowing’’ (Disability Rights Commission, 2006).

B

The challenges associated with raising a child with autism appear to be linked to higher levels of distress and poorer psychological well-being among parents (Hastings, 2008). These consequences may, in turn, represent environmental risks to child health.

Potential data sources Learning disabilities registers There exist a number of relatively well constructed local registers of people with learning disability. Several of these also identify people with learning disability who also have ASD. At present, for example, the Sheffield Case Register includes information on 756 people with learning disability who also have ASD, and the Lambeth, Merton and Sutton ‘‘I Count’’ registers include information on 376 adults with learning disability who also have ASD. Register data has previously been used to investigate the health and mortality of people with learning disability (Tyrer and McGrother, 2009). We are not aware of any studies that have used these data to investigate the extent and nature of health inequalities experienced by people with ASD. DCSF school census DCSF undertakes a School Census of all pupils attending schools in England three times each year (www.teachernet.gov.uk/management/ims/datacollections/schoolcensus/). The School Census has included information on presence and type of special educational needs (SEN) since 2004. The Spring 2009 School Census identified 56,188 pupils between the ages of four and 15 years as having a SEN associated with ASD (0.8 per cent of all pupils), with 40,746 (0.7 per cent of all pupils, 73 per cent of pupils identified with ASD) having a statement of SEN (the remaining being at School Action Plus in the stages of identification of SEN). Records in the School Census database include the identification of only two types of impairment associated with SEN for each individual child (e.g. ASD and profound and multiple learning difficulties, ASD and visual impairment). Children aged 4-15 with ASD were significantly more likely than other children to also be coded as having: B

severe learning difficulties (8.16 vs 0.36 per cent, odds ratio (OR) ¼ 24.48);

B

profound multiple learning difficulties (0.67 vs 0.12 per cent, OR ¼ 5.76);

B

speech language and communication needs (9.94 vs 1.91 per cent, OR ¼ 5.67);

B

behavioural, emotional and social difficulties (9.63 vs 2.82 per cent, OR ¼ 3.67);

B

moderate learning difficulties (7.74 vs 3.05 per cent, OR ¼ 2.66);

B

visual impairment (0.33 vs 0.16 per cent, OR ¼ 2.05);

B

multiple sensory impairment (0.04 vs 0.02 per cent, OR ¼ 1.96);

B

specific learning difficulties (2.34 vs 1.34 per cent, OR ¼ 1.77);

B

physical disabilities (0.75 vs 0.46 per cent, OR ¼ 1.63); and

B

hearing impairment (0.29 vs 0.25 per cent, OR ¼ 1.18).

GP records Read codes are used within general practitioner (GP) records to identify particular health conditions, impairments, health status and interventions. Approximately, 20 read codes

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relate to ASD (e.g. E140.00 infantile autism, Eu84z11 ASD). Studies have previously used read codes to extract data from GP records, including those from the General Practice Research Database, to investigate the extent and nature of health inequalities experienced by people with learning disabilities (Williams, 2009; Samele et al., 2006; Straetmans et al., 2007). While the reliability of Read Coding of intellectual and developmental disability may at times be questionable, practice has suggested it can be significantly improved through liaison with specialist practitioners. It may also be possible to link these data through NHS numbers to other health data. We are not aware of any studies that have used these data to investigate the extent and nature of health inequalities experienced by people with ASD. UK population surveys The rise in interest in ASD over the past two decades has resulted in a number of UK population-based surveys including the presence of ASD as a specific variable. However, this is a relatively recent phenomenon and is primarily restricted to surveys of children. Older child surveys (e.g. 1958 National Child Development Study, 1970 British Cohort Study) and contemporary adult surveys (e.g. Health Survey for England) rarely contain information of value. We consider the surveys identified below to contain information that may be of value in understanding the health of children and young people with ASD.

Birth cohort studies Millennium cohort study (MCS): the MCS is a birth cohort study following up a UK-representative sample of just over 18,000 live births. At Wave 3 (child age five years), parental informants were asked ‘‘Has a doctor or health professional ever told you that [child’s name] had Autism or Asperger’s Syndrome?’’ 132 (0.9 per cent), children were identified by this question as having ASD. The MCS contains considerable additional information on child health and development. Wave 4 data (child age 7) is due to be released in the very near future. These data have not, to our knowledge, been analysed in relation to the health status of children with ASD. Avon longitudinal study of parents and children (ALSPAC): the ALSPAC is a birth cohort study following up just over 14,000 live births. At age 11 years, 86 children had been identified as having ASD (Williams et al., 2008). The ALSPAC contains considerable additional information on child health and development. These data have not, to our knowledge, been analysed in relation to the health status of children with ASD. Cross-sectional and panel studies Office for National Statistics (ONS) 1999 and 2004 Child and Adolescent Mental Health Surveys: the ONS surveys combined include 18,000 children and young people obtained by representative sampling across the UK. Within the study, ASD has been diagnosed against clinical interview criteria ensuring an excellent level of validity (Goodman et al., 2000). In total, 98 children and young people were diagnosed. A sub-group of individuals with intellectual disability can also be identified with reasonable validity. There are data included on physical health conditions experienced by the children and young people as reported by a primary parental caregiver (Emerson et al., 2006). To our knowledge, the association between ASD with or without intellectual disability and current physical health has not been analysed. These associations with mental health problems are currently being explored in research between Bangor and Lancaster Universities. Families and children study (FACS): the FACS is a refreshed annual panel study following a nationally representative cohort of approximately 7,000 British families containing approximately 14,000 children. The data contains parental report of whether the child has been identified as having ASD. In Wave 7 (2005), 101 children (0.8 per cent) were reported by parents to have a SEN associated with autism or Asperger’s Syndrome. The FACS also contains additional information regarding the general and specific health status of children. These data have not, to our knowledge, been analysed in relation to the health status of children with ASD.

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Longitudinal study of young people in England (LSYPE): the LSYPE is following up a cohort of over 15,000 young people as they move from mainstream schools to adulthood. Linking these data to the DCSF School Census (see above) identified 57 (0.4 per cent) participants with a SEN associated with ASD. The LSYPE also contains information on a number of health behaviours (smoking, drinking) and risks (victim of bullying). These data have not, to our knowledge, been analysed in relation to the health status of children with ASD.

Options and recommendations for future research The surveys and datasets identified above contain information that may be of value in understanding the mortality and health of children and young people with ASD, and to an extent, of younger and middle aged adults with ASD and learning disabilities. We are not aware of any sources of information (or options for generating them) that would be of value in understanding the mortality and health of older adults with ASD (especially those who do not have learning disabilities) (Stuart-Hamilton et al., 2009). Options for taking forward research in this area are set out in Table I.

Conclusion There is an urgent need for further research in this area that can establish the morbidity and mortality of this diagnostic group in relation to the full range of major disease groups. This information is needed for public health purposes, to raise awareness amongst clinicians, service providers and commissioners, to steer future research on patterns of co-morbidity Table I Option

Cost

Sample size

Representativeness Comments

Secondary analysis of existing population-based surveys (MCS, ALSPAC, LSYPE, FACS, ONS and CAMHS) Extraction of basic mortality data from existing learning disabilities registers

Low

Low

Good

Low

Modest

Poor

Establish network of ASD registers

Low-medium

Low-modest Unknown

Extraction of data from GP records

Low-medium

Good

Data linkage study using School Census and death registry data

Medium-high Excellent

Good

Excellent

Would provide relevant information on general and specific health status of young people with ASD, but not on mortality Would provide relevant information on adult mortality, but excludes people with ASD who do not have learning disabilities. Not nationally representative The establishment of local registers of people with ASD is a likely component of the English and Welsh National Autism Strategies. Extracting data from these could, over time, provide relevant information on adult mortality Would provide relevant information on general and specific health status, but not mortality. Questionable validity of read coding. Electronic systems to do this for the majority of Welsh general practices are being piloted and may produce data this year Longitudinal linkage of School Census data (for England) could be used to identify children with SEN associated with ASD (and other developmental disabilities) who drop off the school rolls. If access could be gained from DCSF to the names and postcodes of these children, they could be linked to ONS mortality data (see Tyrer and McGrother (2009). There are some concerns regarding the validity of SEN codes

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and on risk and protective factors and above all to help us improve health outcomes for people with ASD. It is hoped that the recently established learning disabilities observatory (www.ihal.org.uk) and confidential inquiry into the deaths of people with learning disabilities (www.bristol.ac.uk/cipold/) will be able to address some of these issues in relation to people with ASD and learning disabilities.

References Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. and Charman, T. (2006), ‘‘Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the special needs and autism project (SNAP)’’, Lancet, Vol. 368, pp. 210-5. Batty, G.D., Deary, I.J. and Gottfredson, L.S. (2007), ‘‘Premorbid (early life) IQ and later mortality risk: systematic review’’, Annals of Epidemiology, Vol. 17 No. 4, pp. 278-88. Batty, G.D., Der, G., Macintyre, S. and Deary, I.J. (2006), ‘‘Does IQ explain socioeconomic inequalities in health? Evidence from a population based cohort study in the west of Scotland’’, British Medical Journal, Vol. 332, pp. 580-4. Batty, G.D., Gale, C.R., Tynelius, P., Deary, I.J. and Rasmussen, F. (2009), ‘‘IQ in early adulthood, socioeconomic position, and unintentional injury mortality by middle age: a cohort study of more than 1 million Swedish men’’, American Journal of Epidemiology, Vol. 169 No. 5, pp. 606-15. Dawson, S., Glasson, E.J., Dixon, G. and Bower, C. (2009), ‘‘Birth defects in children with autism spectrum disorders: a population-based, nested case-control study’’, American Journal of Epidemiology, Vol. 169, pp. 1296-303. Disability Rights Commission (2006), Equal Treatment: Closing the Gap, Disability Rights Commission, London. Emerson, E. (2010), ‘‘Self-reported exposure to disablism is associated with poorer self-reported health and well-being among adults with intellectual disabilities in England: cross sectional survey’’, Public Health, Vol. 124 No. 12, pp. 682-9. Emerson, E., Graham, H. and Hatton, C. (2006), ‘‘Household income and health status in children and adolescents: cross sectional study’’, European Journal of Public Health, Vol. 16, pp. 354-60. Emerson, E., Madden, R., Robertson, J., Graham, H., Hatton, C. and Llewellyn, G. (2009), Intellectual and Physical Disability, Social Mobility, Social Inclusion and Health, Centre for Disability Research, Lancaster University, Lancaster. Farley, M.A., McMahon, W.M., Fombonne, E., Jenson, W.R., Miller, J., Gardner, M., Miller, J., Block, H., Pingree, C.B., Ritvo, R.A. and Coon, H. (2009), ‘‘Twenty-year outcome for individuals with autism and average or near-average cognitive abilities’’, Autism Research, Vol. 2, pp. 109-18. Gee, G.C., Ro, A., Shariff-Marco, S. and Chae, D. (2009), ‘‘Racial discrimination and health among Asian Americans: evidence, assessment, and directions for future research’’, Epidemiologic Reviews, Vol. 31, pp. 130-51. Goodman, R., Ford, T. and Richards, H. (2000), ‘‘The development and well-being assessment: description and initial validation of an integrated assessment of child and adolescent psychopathology’’, Journal of Child Psychology and Psychiatry, Vol. 41, pp. 645-56. Hastings, R.P. (2008), ‘‘Stress in parents of children with autism’’, in McGregor, E., Nunez, M., Williams, K. and Gomez, J. (Eds), Autism: An Integrated View, Blackwell, Oxford. Isager, T., Mouridsen, S.E. and Rich, B. (1999), ‘‘Mortality and causes of death in pervasive developmental disorders’’, Autism, Vol. 3, pp. 7-16. Kanne, S.M., Christ, S.E. and Reiersen, A.M. (2009), ‘‘Psychiatric symptoms and psychosocial difficulties in young adults with autistic traits’’, Journal of Autism and Developmental Disorders, Vol. 39, pp. 827-33. Kopycka-Kedzierawski, D.T. and Auinger, P. (2008), ‘‘Dental needs and status of autistic children: results from the National Survey of Children’s Health’’, Pediatric Dentistry, Vol. 30, pp. 54-8.

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Krahn, G.L., Hammond, L. and Turner, A. (2006), ‘‘A cascade of disparities: health and health care access for people with intellectual disabilities’’, Mental Retardation and Developmental Disabilities Research Reviews, Vol. 12, pp. 70-82. Krieger, N. (1999), ‘‘Embodying inequality: a review of concepts, measures, and methods for studying health consequences of discrimination’’, International Journal of Health Services, Vol. 29, pp. 295-352. Lee, L., Harrington, R.A., Chang, J.J. and Connors, S.L. (2008), ‘‘Increased risk of injury in children with developmental disabilities’’, Research in Developmental Disabilities, Vol. 29, pp. 247-55. Liptak, G.S., Benzoni, L.B., Mruzek, D.W., Nolan, K.W., Thingvoll, M.A., Wade, C.M. and Fryer, G.E. (2008), ‘‘Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children’s Health’’, Journal of Developmental and Behavioral Pediatrics, Vol. 29, pp. 152-60. Loo, C.Y., Graham, R.M. and Hughes, C.V. (2008), ‘‘The caries experience and behavior of dental patients with autism spectrum disorder’’, Journal of the American Dental Association, Vol. 139, pp. 1518-24. Mays, V.M., Cochran, S.D. and Barnes, N.W. (2007), ‘‘Race, race-based discrimination, and health outcomes among African Americans’’, Annual Review of Psychology, Vol. 58, pp. 201-25. Michael, J. (2008), Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities, Independent Inquiry into Access to Healthcare for People with Learning Disabilities, London. Mouridsen, S.E., Bronnum-Hansen, H., Rich, B. and Isager, T. (2008), ‘‘Mortality and causes of death in autism spectrum disorders: an update’’, Autism, Vol. 12, pp. 403-14. Nazroo, J. (2003), ‘‘The structuring of ethnic inequalities in health: economic position, racial discrimination and racism’’, American Journal of Public Health, Vol. 93 No. 2, pp. 277-84. Ouellette-Kuntz, H. (2005), ‘‘Understanding health disparities and inequities faced by individuals with intellectual disabilities’’, Journal of Applied Research in Intellectual Disabilities, Vol. 18, pp. 113-21. Pessah, I.N., Seegal, R.F., Lein, P.J., LaSalle, J., Yee, B.K., van de Water, J. and Berman, R.F. (2008), ‘‘Immunologic and neurodevelopmental susceptibilities of autism’’, Neurotoxicology, Vol. 29, pp. 532-45. Pickett, J.A., Paculdo, D.R., Shavelle, R.M. and Strauss, D.J. (2006), ‘‘1998-2002 update on ‘causes of death in autism’’’, Journal of Autism and Developmental Disorders, Vol. 36, pp. 287-8. Ramirez, M., Yang, J., Bourque, L., Javien, J., Kashani, S., Limbos, M.A. and Peek-Asa, C. (2009), ‘‘Sports injuries to high school athletes with disabilities’’, Pediatrics, Vol. 123, pp. 690-6. Samele, C., Seymour, L., Morris, B., Central England People First, Cohen, A. and Emerson, E. (2006), A Formal Investigation into Health Inequalities Experienced by People with Learning Difficulties and People with Mental Health Problems: Area Studies Report, The Sainsbury Centre for Mental Health, London. Schendel, D., Autry, A., Wines, R. and Moore, C. (2009), ‘‘The co-occurrence of autism and birth defects: prevalence and risk in a population-based cohort’’, Developmental Medicine and Child Neurology, Vol. 51, pp. 779-86. Shavelle, R.M., Strauss, D.J. and Pickett, J. (2001), ‘‘Causes of death in autism’’, Journal of Autism and Developmental Disorders, Vol. 31, pp. 569-76. Simonoff, E., Pickles, A., Charman, T., Chander, S., Loucas, T. and Baird, G. (2008), ‘‘Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample’’, Journal of the American Academy of Child and Adolescent Psychiatry, Vol. 47, pp. 921-9. Straetmans, J.M.J.A.A., van Schrojenstein Lantman-de Valk, H.M.J., Schellevis, F.G. and Dinant, G.-J. (2007), ‘‘Health problems of people with intellectual disabilities: the impact for general practice’’, British Journal of General Practice, Vol. 57, pp. 64-6. Stuart-Hamilton, I., Griffith, G., Totsika, V., Nash, S., Hastings, R.P., Felce, D. and Kerr, M. (2009), ‘‘The circumstances and support needs of older people with autism’’, Final Report to the Welsh Assembly Government, Bangor University, Bangor.

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Swift, P. (2008), Morbidity and Mortality in Autism: A Research Development Paper, Foundation for People with Learning Disabilities, London. Tyrer, F. and McGrother, C.W. (2009), ‘‘Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability’’, Journal of Intellectual Disability Research, Vol. 53, pp. 898-904. van Engeland, H. and Buitelaar, J.K. (2008), ‘‘Austistic spectrum disorders’’, in Rutter, M., Bishop, D., Pine, D., Scott, S., Stevenson, J., Taylor, E. and Thapar, A. (Eds), Rutter’s Child and Adolescent Psychiatry, Blackwell, Oxford. White, S.W., Oswald, D., Ollendick, T. and Scahill, L. (2009), ‘‘Anxiety in children and adolescents with autism spectrum disorders’’, Clinical Psychology Review, Vol. 29, pp. 216-29. Williams, D.R. (2009), ‘‘Analysis of primary care data to support the work of the independent inquiry into access to healthcare for people with learning disabilities’’, Final Report, GPRD, London. Williams, D.R. and Mohammed, S.A. (2009), ‘‘Discrimination and racial disparities in health: evidence and needed research’’, Journal of Behavioral Medicine, Vol. 32, pp. 20-47. Williams, E., Thomas, K., Sidebotham, H. and Emond, A. (2008), ‘‘Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort’’, Developmental Medicine and Child Neurology, Vol. 50, pp. 672-7. Xiong, N., Ji, C., Li, Y., He, Z., Bo, H. and Zhao, Y. (2009), ‘‘The physical status of children with autism in China’’, Research in Developmental Disabilities, Vol. 30, pp. 70-6.

Corresponding author Eric Emerson can be contacted at: [email protected]

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Feature Promoting social inclusion for children and adults on the autism spectrum – reflections on policy and practice Rachel Roberts, Julie Beadle-Brown and Darran Youell

Rachel Roberts is based at the Tizard Centre, University of Kent, Canterbury, UK. Julie Beadle-Brown is a Senior Lecturer in Learning Disability at the Tizard Centre, University of Kent, Canterbury, UK. Darran Youell is a PhD Student at the Tizard Centre, University of Kent, Canterbury, UK.

Abstract Purpose – The purpose of this paper is to discuss the issue of social inclusion for people with autism spectrum conditions. Design/methodology/approach – Drawing on current policy and good practice guidelines as well as the experience of people with autism and those who support them, this paper considers how well legislation, policy, and good practice are currently implemented with regard to improving the social inclusion of children and adults with autism spectrum conditions. Findings – International and UK policy sets out the rights of children and adults with disabilities to live a good life in the community, with reasonable adjustment to be made by society to ensure this is possible. However, the practical and strategic implementations of policies to ensure these rights for people with autism are still not fully in place. Originality/value – This discussion takes into consideration the views of carers and support professionals and the direct experiences of those with autism as well as policy and published guidance. Keywords Social inclusion, Community integration, Autism, Human rights (law), Awareness and attitudes Paper type Viewpoint

Introduction

The authors would like to thank all the professionals who agreed to be consulted about this topic for the purpose of writing this paper and whose views are quoted in the text.

DOI 10.1108/13595471111172840

Social inclusion or social integration is generally considered a key domain of quality of life for most people. The UN declaration on Human Rights (United Nations, 1948) stated ‘‘everyone has the right to freely participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits’’ (Article 27, 1). Article 19 of the UN Convention on the Rights of Persons with Disabilities (United Nations, 2006) states that ‘‘[. . .] (b) Persons with disabilities have access to a range of residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’’. Article 23 of the UN Convention on the Rights of the Child (United Nations, 1989), looking specifically at disabled children, states: ‘‘[. . .] a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community’’. Valuing People (Department of Health, 2001) highlighted social inclusion as one of the four key principles that should underlie policy and practice with regard to people with learning disabilities, including those with autism.

VOL. 16 NO. 4 2011, pp. 45-52, Q Emerald Group Publishing Limited, ISSN 1359-5474

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However, despite this long history of social inclusion being a core element of the rights of all people, there have been substantial difficulties making this happen for people with autism spectrum conditions. This paper considers some of the issues, combining both parental and professional reflections and drawing on the experiences of people on the autism spectrum.

Defining social inclusion Social inclusion is sometimes defined as the ‘‘ability to fully participate in normal social activities, and engage in political and civic life’’. (www.idea.gov.uk/idk/core/page. do?pageId ¼ 71635) It is also defined as ‘‘the provision of certain rights to all individuals and groups in society, such as employment, adequate housing, health care, education and training, etc.’’ www.thefreedictionary.com/social ^ inclusion). It should be noted that the focus is on a person’s rights to access and benefit from the activities and aspects of civic life, not on being compelled to do so in the same way as everyone else or indeed in the way that is defined by society as ‘‘normal’’. Social inclusion is also sometimes referred to as ‘‘community integration’’ – in this context ‘‘community’’ implies ‘‘mainstream society’’. This raises the important question of what constitutes ‘‘mainstream’’ society and infers that there is only one ‘‘mainstream’’. However, it is important to recognise that societies are made up of smaller self-selecting groups, often based on shared experiences and interests, which operate and exist at different levels – family, neighbourhoods, clubs, friends (including virtual social networks), workplaces and so on.

The impact of autism and the role of support Even if we view autism as a neuro-divergence or difference rather than a disability, it is important to acknowledge that the very nature of differences experienced by people with autism can make interacting with others in the community very difficult. Impairments in social interaction, social communication and social imagination mean that people with autism find social situations and conventions difficult. This is especially true when autism is accompanied by other disabilities or differences such as intellectual disabilities or mental health problems. Sensory processing differences and sensitivities can exacerbate the difficulties people experience moving around and interacting in community settings. Even the most able people often need encouragement and support (often very subtle support) to be able to access ordinary community activities and facilities in order to have their needs met, access learning or employment or to participate in preferred activities. However, people do not just need support to be able to access and participate in their community but they need the community to understand and accommodate their needs. Some of the barriers to social inclusion for people with autism are described and illustrated below. It is important to note here that not everyone agrees that effort should be made to help people access the community – some self-advocacy groups maintain that people with autism should be ‘‘allowed’’ to isolate themselves and abstain from social inclusion if they wish to. People without autism also isolate themselves, only interacting with society when absolutely necessary. However, most of these people make this choice actively, on the basis of previous experience – an informed decision. Many people with autism, especially those with greater needs, require support to gain positive experiences which they can use to make informed choices about whether, how, when and with whom they interact. It is also important to briefly consider what we know from experience and research has a positive impact on the experiences of people with autism. The National Autistic Society use the acronym ‘‘SPELL’’ to summarise a framework for autism-friendly practice and environments. This is a useful framework when thinking about what society needs to do to become more autism friendly, not just what autism specific services need to do. The SPELL framework is described in detail elsewhere (Beadle-Brown et al., 2009; Beadle-Brown and Mills, 2010) but is outlined briefly below: B

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Structure – involves the use of supports such as visual timetables, environmental management and other non-verbal communication aids, to make the world more comprehensible and predictable and thus reduce anxiety. We all use structure of some

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type to make our lives predictable and organised. We all find it easier to find our way around a well-signposted environment. We all get frustrated when our regular supermarket changes the layout of the shop or the aisle content yet again. Most of us get anxious when trying something new and knowing what to expect when we get there is helpful. B

Positive approaches and expectations are about supporting people to try new things safely, positively, successfully, so they can make choices, learn and grow in independence. It is about working with people to recognise and develop their strengths, to achieve their maximum potential and about valuing their contribution, whatever that might be.

B

Empathy is about understanding how autism affects each individual and adjusting our approaches and support to take into account their views of the world. It is about understanding and using the approaches that make things easier for people, reducing language, keeping things as concrete and visual as possible and helping to reduce anxiety.

B

Low arousal is not the same as no arousal. It is about taking action to reduce the excessive arousal in an environment to help people focus and feel less anxious, for example, by providing low arousal waiting rooms in hospitals and GP surgeries, private interview rooms in banks and social service departments, or a quiet space in schools, colleges or work environments so that people can have time out if needed. Managing things like temperature, light, strong smells and noise are also often important, especially in environments where people with autism have to be.

B

Finally, Links is primarily focused on supporting integration into society through consistency and continuity of approach. This is achieved through a partnership between people with autism, families, schools and public agencies.

Barriers to social inclusion Despite there being an increased awareness of autism in society there still appears to be a lack of understanding of the condition and its effects on the person with the diagnosis. Brewin et al. (2008) write that one of the main issues for people with autism is living with an ‘‘invisible disability’’ (p. 250). This invisibility means that people with autism are described as ‘‘different’’ but this difference is sometimes not evident enough for ‘‘their special needs to be recognised’’ (p. 242). They further comment that if people ‘‘cannot see the disability’’ (p. 250) they are less likely to understand the problems associated with that disability. This is reflected in some of the examples below. Low levels of training, awareness, knowledge and understanding of autism, and of how autism affects a person and their behaviour, is still commonplace in today’s society. These factors have led to a ‘‘general confusion’’ (Lepkowska, 2009, p. 3) about autism. This confusion brings with it myths and general misunderstandings that affect public attitudes. Sicile-Kira (2003) writes of several socially held ideas about people with autism that are not true but are believed to be so. For example, she writes that it is believed that everyone with autism has a ‘‘special extraordinary talent’’ or is ‘‘a genius’’ or is ‘‘mentally retarded’’ (pp. 2-4). Humphrey and Lewis (2008) write of other unfounded views of autism. They highlight the public’s view as being of autistic people ‘‘rocking’’, being ‘‘emotionally cut-off’’ or being ‘‘Rain Man like savants’’ (p. 32). This lack of awareness and understanding can result in people with autism being excluded. Difficulties in social inclusion often begin with playgroups and early years activities not necessarily being accessible for children with autism. These situations can be stressful and complex for parents and families and, though supportive playgroups and nurseries can make a major difference to early years inclusion, awareness of autism and support offered to playgroups and nurseries are often inadequate. Difficulties around inclusion continue at school. Though the needs of children with autism are covered by the Special Educational Needs Code of Practice (SENCoP, 2002), there are major difficulties still present in terms of consistent and valid support. The move towards mainstream inclusion, which has been largely welcomed, is not always fully supported with adequate training or resources. Particular aspects of mainstream teaching which seem to be

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considered best practice (e.g. highly stimulating environments and talk based teaching) are often not suitable for children with autism and can be distressing for those with hypersensitivities and processing delays. Despite the SENCoP and Disability Discrimination Act (DDA, 2005) and moves towards inclusion in school, there is as yet no compulsion for SEN training at teacher training level. Children with autism who are unable to cope in what is often a challenging and hostile environment can react badly and become labelled as having ‘‘challenging behaviour’’. Their autism is often blamed for this and the behaviour seen as inevitable, when often it is the environment and empathy for the child’s needs which is lacking. There is often a lack of understanding about what constitutes reasonable adjustment and the response is often to implement management strategies which are inappropriate for a person with autism, and which can exacerbate the situation – strategies which are intended to ensure compliance rather than support co-operation (for example, shouting to demand eye contact, forced sitting still, exacting uniform requirements). Even when children are successfully included in the teaching environment at school, it does not always follow that they will be successfully included in the social environment. Children with autism can often experience isolation even within an intended inclusive environment and often require staff help to learn the skills needed to interact with other children and to ensure that there are opportunities for children with autism to interact with other children in smaller groups during preferred activities. When this support is provided well, with systems in place to educate and support peers and deal with bullying, real inclusion can happen and can reap benefits for all the children. In terms of just existing and moving around within the wider community, there are also many issues that arise. Autism is recognised as a disability under the terms of the DDA 2005, along with other ‘‘invisible’’ disabilities. It is, however, hard to get recognition in practice for people with autism, who may not regard themselves as disabled, recognise the benefit of strategies that might help them, or be able to tell anyone of their needs. On an everyday basis travelling with someone with autism, the generic use of the wheel chair symbol to denote access points and services can be problematic. It can cause confusion for those with autism in accessing disabled toilets, lifts, public transport reserved seats, etc. due in part to literal understanding – ‘‘I don’t have a wheelchair or a walking stick so I can’t use the lift’’. Misleading or unclear signs on toilets as to which ones are for men and which ones for women can also create uncertainty and distress. Family toilets, with separate cubicles, such as found at some of the newer shopping centres, can be extremely helpful for parents or carers who have to support more than one child or where the child with autism is a bit older but still needs some supervision. The need for peace and quiet offered by a lift or a less used entrance is often not recognised and the need to have the volume in cinemas and theatres up very loud is often problematic as illustrated in the following quote from a personal assistant to a 12 year old boy with autism: We got to the theatre slightly early in the hope that we could get in before the main crowd, but had to wait outside in the crowd for more than half an hour which he didn’t like very much – understandable as he had waited all morning to get to theatre then had to stand by the door. Perhaps, we could have been allowed in slightly early, which then would have avoided mass barging to get through the one small door [. . .] He chose to wear his ear defenders throughout the performance as the music was very loud [. . .] His friend, who has ADHD, wished he had brought ear defenders as he too found the music too loud.

However, some good practices in this area do exist and some theme parks, for example, offer Exit passes[1] for children with a disability. It takes a hardened carer to walk past all the glares of those waiting in the queue because the child does not look disabled, but the ability to do so makes the experience better for the whole family. Ticket offices which have signs displaying concessionary rates for disabled visitors and support workers are often staffed by people who are challenged by concepts of invisible disabilities – ‘‘he doesn’t look disabled to me’’. Public transport can often be very difficult for children with autism to use although good support can often help them cope with the sensory difficulties as illustrated in the quote below:

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The tube was very noisy, crowded, hot and smelly – affected all senses really! [. . .] I opened the window on the tube to try and get some cool air (but then that made the noise problem even worse!). However, he coped very well, he perched himself on a small ledge by the door of the tube and we counted down each stop until we reached ours (Personal Assistant).

Finally, eating out can be very challenging: In restaurants, I often find it is impatient staff that are the problem. Once at a fast food place, I specifically asked for a plain cheese burger, no salad or sauce, and no seeds on the bun and she just ignored everything [. . .] and we got a cheese burger with all the extras in a seeded bun! [. . .] it then took ages to clear everything out the bun, scrape the seeds off of it and explain to J why we had to do this and why the lady he heard me explain all this to hadn’t listened!! [. . .] However, there are other restaurants [. . .] when the waiter is very helpful and considerate [. . .] he waited patiently for J to decide what he wanted before offering suggestions without seeming pushy (Personal Assistant).

Mansell et al. (2005) suggested that although services often aspired to promoting social inclusion for the people they support, in many cases there was a gap between values and practice. Whether those that support people with autism understand what it looks like if people are experiencing social inclusion will be an important influence on whether they can help people to achieve that. The quotations below illustrate how professionals, consulted for the purposes of this paper, defined community integration specifically with respect to children and adults with autism: Community integration is about individuals integrating at their own pace, to their own level and to their own potential [. . .] (Voluntary Sector Professional). [. . .] services should be accessible to all [. . .] the fact that a child is autistic or has a disability shouldn’t be a barrier [. . .] (children’s social care professional). [. . .] you have someone in the community that can live with the relevant services to support and lead, not maybe a normal life like you and I would know it, but meet their potential in their community [. . .] (Health Professional). [. . .] we try to take a whole community approach to making things better for people with autistic spectrum disorders [. . .] these people are isolated [. . .] because they have such a range of needs which are so poorly met by the community (Adult Social Care Professional). [. . .] how we enable our youngsters to access and integrate with the community. For some [. . .] it’s very much [. . .] in terms of the school community and how we manage that. Then we go further afield [. . .] other facets of the wider community to give them a greater understanding of children and young people with autistic spectrum conditions [. . .] (Education Professional).

As can be seen, there are elements of the more formal definitions of social inclusion in the views expressed above but in some of them there is also some reference to the barriers and to the fact that helping people achieve social inclusion is not easy. However, the emphasis in the statements from professionals relies largely on the person with autism being able to ‘‘join into’’ a community, that it is assumed they are separated from, and which they wish to join. This seems largely based on concepts of normalisation and the phrase ‘‘[. . .] not maybe a normal life like you and I’’ is indicative of the response often encountered from service providers. There is an assumption of the self as normative which informs ideas of inclusion, rather than the focus in the legislation to enable participation in civic life and access to services. For example, the emphasis on ‘‘social inclusion’’ activities for young teenage boys is all too often based on a stereotypical ‘‘lad culture’’ of team sports, and ignores smaller supportive activities which may be more appropriate to the individual. The education professional quoted above talks about wider community acceptance rather than the normalisation of the person with autism. When the professionals consulted were asked to comment on whether full community integration was possible for people with autism, a number of views emerged. The first related to the fact that whether or not the person becomes fully integrated in society might partially depend on the individual and their own preferences and agendas: That depends on the individual. What they see as integration may not be seen as that by others, by the people that measure things like community integration [. . .] (voluntary sector professional).

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It’s difficult because the needs of some youngsters [. . .] do not feel the need to integrate, some of them feel the need to be isolated and given the choice would choose to do so. It’s difficult because we can’t coerce people, we can encourage. We can give them the skills and give them the experiences but at the end of the day it [. . .] comes down to personal choice. If the opportunities are made easier you would hope that people would choose to access and to integrate more [. . .] (Education Professional). It does depend on the expectations of the family or the individuals, I think we are going a long way towards that [. . .] but ultimately there are finite resources so it’s looking at creative ways to work toward that end [. . .] (Health Professional).

The latter quote alludes to the second view that emerged – that cost or lack of resources is an issue in achieving full social integration, however desirable that might be. There is also an emphasis again on people ‘‘choosing to integrate’’ rather than making appropriate support available for the individual to access the activities relevant and appropriate for them: [. . .] I’m a great believer in having children with disabilities in mainstream school because actually that helps other members of the community recognise that they are there and they are more used to seeing them, engaging and involving them [. . .] the ideal would be fully integrated but there’s a cost element which will always hinder it [. . .] (Children’s Social Care Professional).

Finally, the idea that work is central to social inclusion, an idea which is supported by current policy (Valuing People Now (2009) and the Autism Act (2009)) was also raised: Whenever you go to a conference you usually hear an inspiring story from people that makes me think that it can be done but then you hear lots more stories about employers who are unwilling to make reasonable adjustments, and work is very important to community integration because if you’re employed you have the money to do the other things and so on [. . .] I hear so many stories of how it’s not happening that I worry [. . .] it doesn’t mean that this isn’t what we should be striving for because it’s people’s rights (Adult Social Care Professional).

It is important to recognise that people with autism often have skill sets which are profoundly valuable to the wider community. Some companies such as the Danish computing firm Specialisterne have already latched onto this and especially recruit people with autism. Though this selectivity could be considered to be isolating in itself, it can be contextualised when one considers that there are many social structures within wider communities which are self-selecting – whether within social and leisure activities (sports, libraries, music) or work places (academia, the arts, horticulture, etc.). The final quote from the professional above also illustrates some of the concerns about whether community inclusion is actually happening and identifies the issue with employers being unwilling to make reasonable adjustments so that people with autism can work and be full contributing members of the community. Shore, in his book Beyond the Wall writes about his experiences at work and how people struggled to make allowances and how he was fired because he did not fit in: [. . .] The business uniform was a suit and tie which drove me nuts [. . .] the only way I could survive was to ride my bicycle from where I lived (about 7 miles) to work and enjoy the out-of-doors for an hour and a half each day. It took 45 minutes to get to work this way as opposed to two hours by public transportation. Made sense to me. Riding my bicycle to work and changing into my suit in the basement of the office was too weird for them. [They] told me that I had better take public transportation and arrive at the office in my suit [. . .] An assignment with a fellow accountant [. . .] didn’t work out well. I never understood what he wanted and he seemed irritated by the things I did. For example, the bank where we worked was overheated [. . .] I opened the window and took off my shoes when I was sitting at my desk out of view of other people. He didn’t like that at all [. . .] One day the personnel officer called me into his office and told me he was letting me go. I just didn’t seem to fit he said [. . .] I felt more confused than anything else because I couldn’t understand what I had done that caused my employer to act in this manner. Perhaps, a bit more patience and a willingness to work with me on getting acclimated to my position would have netted them a hard-working, focused accountant (pp. 112-113).

The other issue to acknowledge with regard to employing or educating people with autism is that they often get to the required end by using different means. In some environments emulating rather than imitating working methods is not tolerated, even though the methods

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used by the person with autism may be more efficient and accurate and no more ‘‘risky’’. This can also apply in school settings where children are required to learn to do, for example, maths by a particular method (which can change over time and vary by teacher), rather than valuing the child’s own approach as valid. In terms of changing wider attitudes and awareness, policy might be important but other approaches are also needed to change societal attitudes as illustrated below: Awareness has definitely increased [. . .] people talk about it more and do not dismiss it [. . .] still some way to go on making society more receptive and understanding of issues [. . .] (Voluntary Sector Professional). I think society still struggles [. . .] there isn’t a huge amount about people with autistic spectrum disorders in the press and if it is it’s the traditional sad story as opposed to something that is powerful or positive [. . .] I don’t think you can legislate for that, I think that is about societal attitudes (Children’s Social Care Professional). [. . .] when I mention the word autism I look at my audience and think ‘‘you don’t really understand what I’m saying here’’ [. . .] I think you’ve got to use legislation where you can [. . .] but it’s a pretty blunt instrument for the general public [. . .] there has to be a mixed approach if you really want to change people’s views [. . .] (Adult Social Care Professional).

Bringing about change The Adult Autism Strategy (2010) published following the Autism Act (2009) does not specifically use the phrase ‘‘social inclusion’’ but summarises the vision for the strategy as follows: All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.

The UK now has a suite of policies that support the inclusion of people with autism in their community and society more generally. The challenge now, especially in times of reduced resources, is to make change happen. Supporting inclusion in school and employment is a vital part of promoting social inclusion but has to be done well. Creating an autism friendly society does not necessarily have to be very difficult or costly. The types of adjustments required can often be small and easy to do, with a bit of creativity and a lot of empathy. Of course, not everyone with autism will need all of the adjustments made but making those adjustments will not harm those who do not need them. Consulting and taking into account the needs of people with autism and their families when we design new buildings, set up new structures and clubs, etc. is one way to make our society more inclusive. In fact, the types of adjustment and accommodation required for people with autism and their families help many other people with disabilities and indeed the rest of society to have a less stressful experience. The bigger challenge is in helping society to want to include people with autism – changing attitudes and perceptions of wider society is even more difficult when one considers that the attitudes and actions of people who support those with autism are not always indicative of respect or value. A recent example of this was the Panorama programme revealing abuse of people with learning disabilities and autism in a private hospital (http://news.bbc.co.uk/ Panorama/hi/default.stm Undercover Care: The Abuse Exposed). One core way is for services to support people with autism to be actively involved in community life in a way that takes account of individual needs and preferences but so that the rest of society can see them as valued members of the community, people with a contribution to make. Another challenge arises from the fact that, as a nation, we rank very low in terms of child welfare and wellbeing (UNICEF Report Card 7). It is worth questioning here whether including vulnerable population groups into a ‘‘mainstream’’ that is considered by UNICEF to be failing the majority of children, is actually beneficial. Perhaps, as a society, we need to

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consider more carefully aspects of wider social inclusion and cohesion at the same time as thinking about those who are most vulnerable.

Note 1. An exit pass allows children with disabilities and up to three accompanying adults to use the exit to the rides so that they do not have to queue for as long.

References Autism Act (2009), HMSO, London. Beadle-Brown, J. and Mills, R. (2010), Understanding and Supporting Children and Adults on the Autism Spectrum, Pavilion Publishing, Brighton. Beadle-Brown, J., Roberts, R. and Mills, R. (2009), ‘‘Person-centred approaches to supporting children and adults with autism spectrum disorders’’, Tizard Learning Disability Review, Vol. 14 No. 3, pp. 18-26. Brewin, B.J., Renwick, R. and Schormans, A.F. (2008), ‘‘Parental perspectives of the quality of life in school environments for children with Asperger Syndrome’’, Focus on Autism and Other Developmental Disabilities, Vol. 23 No. 4, pp. 242-52. Department of Health (2001), Valuing People: A New Strategy for Learning Disability for the 21st Century (Cm 5086), The Stationery Office, London. Humphrey, N. and Lewis, S. (2008), ‘‘‘Make me normal’: the views and experiences of pupils on the autistic spectrum in mainstream secondary schools’’, Autism, Vol. 12 No. 1, pp. 23-46. Lepkowska, D. (2009), ‘‘Beyond expectations’’, Education Guardian, May 19, p. 1. Mansell, J., Beadle-Brown, J., Ashman, B. and Ockendon, J. (2005), Person-centred Active Support: A Multi-media Training Resource for Staff to Enable Participation, Inclusion and Choice for People with Learning Disabilities, Pavilion, Brighton. Sicile-Kira, C. (2003), Autistic Spectrum Disorders: The Complete Guide, Vermilion, London. United Nations (1948), Declaration on Human Rights. United Nations (1989), Convention on the Rights of the Child. United Nations (2006), Convention on the Rights of Persons with Disabilities.

Corresponding author Julie Beadle-Brown can be contacted at: [email protected]

To purchase reprints of this article please e-mail: [email protected] Or visit our web site for further details: www.emeraldinsight.com/reprints

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Book review Can the World Afford Autistic Spectrum Disorder? Nonverbal Communication, Asperger Syndrome and the Interbrain

Digby Tantum, Jessica Kingsley, 2009, £18.99, hardback, ISBN-10: 9781843106944,

non-experts and inappropriate (even if honourable) choices on intervention.

Reviewed by Patrick Dorr

As a parent, some issues and concepts proposed seemed controversial, although this in itself helped my own reassessment of some of the aspects of ASD that we experience (such as the link (moreover potential lack of link) between gaze, eye contact and anxiety).

As a parent of a young son diagnosed with autistic spectrum disorder (ASD), and a non-expert in the medical/scientific aspects of this disorder, I found this book engaging, especially the concepts and hypothesis on the interbrain – an unspoken and unseen interconnectivity that exists between people, and appears to be functioning differently (mainly below par) in ASD-affected individuals compared to the neurotypical population. It was easy to identify with the many and diverse aspects of ASD and indeed the hypotheses underpinning the expression of this disorder. It was also easy to question certain aspects raised, which is hardly surprising given the diversity of symptoms and expressions seen with people affected by ASD. It was reassuringly stressed in the book that diversity amongst people with ASD is greater than in neurotypicals in light of non-adherence and acceptance of the norm, especially in social interactions. The book covers a range of topics from the complexity and diversity of diagnosis through to the way diagnosis is handled by individuals with ASD who are self-aware. This may help the reader to put themselves into the shoes of a person with ASD to some extent. Such explanations/hypotheses may be welcome or useful for carers/family of ASD individuals as it shows that there are few rules/techniques that can be applied universally to help this disorder across affected individuals. Assumptions that all people with ASD do ‘‘X’’ or cannot do ‘‘Y’’ are extremely frustrating (especially in schools) and it leads to overconfidence by

The book covers interesting new themes related to this disorder and emphasises the interbrain concept. Generally, the more immediate theme of the book title (can the world afford ASD?) seemed not to be so relevant. Some figures/metrics on the technical aspects of affordability (i.e. monetary cost in terms of direct and indirect management) are mentioned. The author, in fairness, explains in the introduction that this was not the intended theme of the book, although this subject did seem a little conspicuous by its absence, especially as many carers/lobbyists like to see this in order to promote research and lever support processes. The discussions around the interbrain are interesting and provide a very good vehicle for putting aspects of ASD to the reader in a new way, and possibly explaining some of the root causes of the disorder. The interbrain hypotheses with analogies to the internet (such as broadband vs modem and accommodating abilities), the malfunctioning not just of an individual computer but moreover the communication and recognition between computers, enable the reader to understand the concepts raised. The notion of the interbrain as an integrated system (such as an organism) also helps the author get to grips with the concept. The postulated

VOL. 16 NO. 4 2011, pp. 53-54, Q Emerald Group Publishing Limited, ISSN 1359-5474

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influence of the interbrain on ASD characteristics (such as persona) was thought provoking and may be helpful in understanding the disorder better. This is useful as it provokes new thinking and may provide the foundation for helping individuals with the condition at least for some readers (although it is not obvious that this is an intended outcome of the book). There is arguably a lack of ‘‘what to do’’ or recommendations, especially as so many thought provoking observations are cited. However, it is almost inevitable that a reader who is also a carer/loved one of an ASD individual seeks ‘‘eureka’’ moments and advice in progressive literature on ASD. The reader should not lose sight of the fact that the book’s emphasis is more around how nonverbal communication affects social interaction rather than directly helping carers. Rationalising proposed correlations in case studies that highlighted improvements against symptoms in relation to events (such as ‘‘Honey therapy’’ – where the unremitting attention of dogs helped outward communication of a child) were interesting, heart-warming and

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useful. The section on bullying brought context to this behaviour (for both the bully and the ASD victim). This could potentially help individuals with ASD. The book is also useful for reference purposes although the referencing and citation are a bit inconsistent (e.g. obscure biblical references cited yet arguably more useful specific/behavioural and societal material was occasionally not backed up with potentially useful references). The focus on the strengths that people with ASD show (e.g. attention to detail, immunity from contrived (albeit unavoidable) status in society) may offer some reassurance to family members, as well as provide strategies to enable appropriate intervention. The book finishes strongly, highlighting some of the strengths of ASD individuals in society (e.g. technical skills in employment), which is also potentially useful in enabling a more progressive approach to helping people with ASD in the workplace and acknowledging the valued role they have to play in society.