Alone Together: Making an Asperger Marriage Work

Alone Together

of related interest Loving Mr. Spock Understanding an Aloof Lover – Could it be Asperger’s Syndrome?

Barbara Jacobs Foreword by Tony Attwood ISBN 978 1 84310 472 8

An Asperger Marriage Gisela and Christopher Slater-Walker Foreword by Tony Attwood ISBN 978 1 84310 017 1

Aspergers in Love Couple Relationships and Family Affairs

Maxine Aston Foreword by Gisela and Chris Slater-Walker ISBN 978 1 84310 115 4

Asperger Syndrome and Long-Term Relationships Ashley Stanford Foreword by Liane Holliday Willey ISBN 978 1 84310 734 7

Asperger’s Syndrome and Adults… Is Anyone Listening? Essays and Poems by Spouses, Partners and Parents of Adults with Asperger’s Syndrome

Karen E. Rodman Foreword by Tony Attwood ISBN 978 1 84310 751 4

Sex, Sexuality and the Autism Spectrum Wendy Lawson Foreword by Glenys Jones ISBN 978 1 84310 284 7

Alone Together Making an Asperger Marriage Work

Katrin Bentley Foreword by Tony Attwood

Jessica Kingsley Publishers London and Philadelphia

First published in 2007 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © Katrin Bentley 2007 Foreword copyright © Tony Attwood 2007

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library of Congress Cataloging in Publication Data Bentley, Katrin, 1960Alone together : making an Asperger marriage work / Katrin Bentley ; foreword by Tony Attwood. p. cm. ISBN-13: 978-1-84310-537-4 (pbk.) 1. Bentley, Gavin. 2. Bentley, Katrin, 1960- 3. Asperger's syndrome--Patients--Biography. 4. Asperger's syndrome--Patients--Family relationships. 5. People with mental disabilities--Marriage. I. Title. RC553.A88B46 2007 362.196'8588320092--dc22 [B] 2006101868

British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 84310 537 4 ISBN pdf eBook: 978 1 84642 623 0 Printed and bound in Great Britain by Athenaeum Press, Gateshead, Tyne and Wear

Contents

FOREWORD BY TONY ATTWOOD

7

PREFACE

9

ACKNOWLEDGEMENTS

11

THE CACTUS AND THE ROSE

13

1.

Becoming Aware of Asperger’s Syndrome

17

2.

Meeting the Handsome Stranger

22

3.

The Wedding

25

4.

The First Real Argument: I Married You for Fun, Not for Problems

27

5.

Travelling to Australia: The White Board

33

6.

The Honeymoon: Rigid Thinking!

35

7.

Sexuality, Intimacy and Love

38

8.

Making Friends

46

9.

Starting a Family: Empathy and Theory of Mind

52

Babies and New Mothers are Unpredictable: Coping with Change

55

Arguments Need to be Resolved: Being Married to a Non-Communicator

59

12.

A Family Requires Teamwork

64

13.

The ‘Girlfriend’

66

10. 11.

14.

Dealing with Sickness: Associative Thinking Causes Stress

70

15.

The Car Accident: Dizzy Spells can be Fatal!

78

16.

Being There in Body but Not in Soul: Alone Together

82

The Energy Theory: My Way of Dealing with Tantrums

86

Bringing up Champions: How to Handle Criticism

93

A Good Day Turns Bad in a Matter of Seconds: How We Fix Arguments

99

17. 18. 19. 20.

How a Diagnosis Helps: Resources and Opportunities for Improving the Relationship 104

21.

The Stress Factor: Understanding Each Other

108

22.

Our Life Today

114

EPILOGUE BY GAVIN BENTLEY

117

USEFUL CONTACTS AND FURTHER READING

119

Foreword

When Katrin Bentley met and fell in love with Gavin she had no idea that his unusual and initially endearing and eccentric personality was a sign of Asperger’s Syndrome. Soon after they were married, however, she recognized that there were going to be major problems in the relationship. Katrin’s initial optimism that Gavin would become more motivated and able to socialize, and develop greater empathy and ability to satisfy Katrin’s need for affection and intimacy, gradually dissolved into despair that these abilities were not going to be achieved easily, if at all. After many years of their trying to understand each other and adjust to very different relationship needs, there was a revelation – Gavin had the classic signs of Asperger’s Syndrome. At last there was an explanation for Gavin’s personality, abilities and behaviour and Katrin’s loneliness and frustration. With this knowledge came a dramatic change in the quality of the relationship. Katrin discovered strategies, based on her increasing understanding of the characteristics of Asperger’s Syndrome, to make an Asperger marriage work. As she states towards the end of her book, ‘After all those years we finally have the relationship I always longed for’. By nature, Katrin is an optimistic person who is resourceful, determined and loyal. She is also a teacher, and her book will teach you how to have a successful relationship with someone who has Asperger’s Syndrome. I know that many relationships will be rescued by reading her explanations and applying her advice. This book could change your relationship and your life. Tony Attwood March 2007

7

Preface

I have written this book for all those people who are in a marriage that isn’t working. My intention is to provide readers with helpful strategies and hints on how to improve their relationship. Marriage is no simple task at the best of times, but in the presence of Asperger’s Syndrome it can become an enormous struggle. My husband and I are living proof of that. Our relationship was very difficult, but today we are a happy couple. Once we discovered that Asperger’s Syndrome was the cause of our endless misunderstandings we were able to come to terms with our different way of thinking. I have read various books to help me understand the behaviours that are part of the condition. Thanks to the knowledge we’ve gained, we’ve been able to get our marriage back on track. Of course we can’t hand out a secret formula that will guarantee success. After all, people with Asperger’s Syndrome are all unique in their behaviour and can’t necessarily be compared to each other. Any comments made in this book are simply a reflection of our own experiences. It isn’t easy for us to share our journey with the public, but we are grateful to have found happiness and would like to give others the same opportunity. We hope this book will clarify some of the most common misunderstandings that occur in Asperger marriages and encourage couples in their search for harmony. A note to reader: At times I use the personal pronoun ‘he’ when talking about partners with AS. Where I have done this, it should be taken to refer to both genders. 9

Acknowledgements

First I’d like to thank my husband Gavin who helped me write this book by letting me know how he feels and thinks. Without his valuable input I wouldn’t have been able to understand how he processes thoughts. Alone Together required us to work as a team, which for obvious reasons wasn’t all that easy. It needed a lot of persistence but in the end we were able to link my love for writing with Gavin’s great sense of accurate presentation. His attention to detail and his need to correct error were at times frustrating, but they kept me on my toes. More than once I read him a chapter which he then dismissed with a few sharp comments. He didn’t tell me how to rewrite it, he simply complained until he thought it was good enough. The next person to thank is Professor Tony Attwood, who with his books, videos and seminars helped me understand Gavin’s way of thinking. Professor Attwood’s description of Asperger’s Syndrome is so accurate that I was able to use his great knowledge and put it into practice. Thanks to him Gavin and I have learned to communicate and are now much closer. Authors who have written about their personal experiences with autism, such as Temple Grandin, Donna Williams and Liane Holliday Willey, also played a big part in helping us understand each other. For quite some time after the diagnosis Gavin wasn’t able to explain his thoughts and feelings. Reading these books gave me ideas on what might be going on inside of him. They inspired me to prompt him with specific questions which he was able to answer. Thanks to those books Gavin has learned to express his emotions more accurately and this has made it possible for us to connect at a deeper level. Last but not least I’d like to thank Asperger Services Australia who informed us of upcoming seminars and let us borrow books and videotapes from their library. Not only did they let us use their resources, they were also great at giving support.

11

The Cactus and the Rose

I wrote this poem to my husband after an inspirational seminar with Tony Attwood on the topic of Asperger marriages. That day he’d mentioned the book Asperger’s Syndrome and Adults … Is Anyone Listening? It’s a collection of essays and poems written by spouses, partners and parents of adults with Asperger’s Syndrome, put together by Karen E. Rodman (2003). At this point I hadn’t read the book myself but apparently one of the writers had compared an Asperger marriage to a relationship between a cactus and a rose. I liked this thought and took it on board before I wrote this poem. A long time ago I was a rose and you were a beautiful, strong and reliable cactus. I loved your strength, your confidence and your appearance, but I found it hard to live with you in the desert. You wanted me to suit you, and started to cut off my green leaves. The ground in the desert was dry, the climate harsh and I desperately needed water to live. Slowly I started to wither and lose my flowers. I missed the nice garden soil, the fertilizer and all the other colourful plants, but somehow I felt that I didn’t fit into the garden environment anymore. My remaining leaves had become tougher and I almost looked like a cactus! I learned to ignore the harsh sun and the sandstorms. I stopped to feel thirsty. In fact I stopped to feel much at all… That was easier on one hand, but sometimes I remembered how I used to enjoy the refreshing raindrops on my leaves after a morning shower, or the gentle touch of a butterfly passing by.

13

14

Alone Together

I felt strange there next to you in the desert. I had no idea that you were a cactus, I wasn’t aware that this plant existed. I was confused and desperately tried to turn you into a rose. That must have been so difficult for you! You tried to be one and as long as you did everything like a rose you were loved by me and all the other roses, but as soon as you behaved like a cactus everybody turned away from you. Finally you gave up and avoided all the gardens. You became even more of a cactus, why should you make an effort, when all you got was resentment for not being what everybody else wanted you to be? You retired back into solitude, finding your own company more pleasant than being with others. The roses didn’t only turn away from you, they also left me out, after all we didn’t have much in common anymore. I was a troubled and withered plant, no fun to be with! They wanted to spend their days talking about different fertilizers, a topic on which I had nothing to contribute. So I joined you in your solitude and learned to gain strength from within myself. Oh yes, I missed my colourful times in the garden, because as much as you will always be a cactus, I will always be a rose! One day I found a book on cactuses! I gave it to you to read and we both agreed that the description of this plant matched you perfectly. You seemed so relieved to know that you were not just an unusual rose, but a beautiful, strong and resilient cactus. I was overjoyed too, because I realized that a cactus has different ways to show love. All those times when I felt so cold and lonely I was actually treasured by you, it just wasn’t easy for me to see. There are lots of books on cactuses, but there are not any specific ones on roses. I promise I’ll never give up trying to understand the needs and joys of a cactus. All I hope for is that you are prepared to learn about roses and let me be one. I need to be what I am as much as you need to be what you are. Instead of trying to turn each other into the same plant we can learn to accept our differences. After all, I admired your strong cactus features when we first met, and I am sure that you were taken by my colourful rose petals. Now I am not blooming as much as I once did, but my roots are still there in the ground and I’m sure that with a bit of water and fer-

The Cactus and the Rose

15

tilizer I will be able to flower again. Maybe even more, because I will not only be a colourful rose, but also a strong one. If we keep nurturing each other we will be able to turn our relationship into something special, and our children will grow up with the reliable, strong and interesting characteristics of the cactus as well as the wild, sensitive and colourful features of the rose. Let’s be what we are and enjoy it! Katrin Bentley

1. Becoming Aware of Asperger’s Syndrome For many years I felt that something was wrong with our marriage but I couldn’t explain what it was. Gavin and I didn’t seem to get on and had daily arguments that were unbelievably draining. It was as if he had different personalities, one minute he was sweet and nice, the next minute he was angry and frustrated. His behaviour confused me immensely and affected my confidence. I didn’t share my problems with others. On one hand I was desperate to confide in a friend: on the other hand I felt embarrassed that we struggled so much. Even if I’d overcome my reluctance to talk, I wouldn’t have known how to describe the situation. Our relationship was clearly dysfunctional, but in some way we still loved each other – it made no sense. If I ever made a comment regarding our marriage I was faced with remarks such as, ‘He’s just a man’, ‘My husband does the same’, ‘Learn to stand up for yourself ’, ‘Don’t forget that you’re Swiss and he’s Australian’ or ‘Maybe you’re just homesick.’ I felt incredibly lonely. There was nobody I could talk to, nobody who understood. In the end I kept it all to myself and pretended everything was fine. Gavin and I were like a couple that wanted to dance and couldn’t follow the same rhythm, we continually bumped into each other. The frustration was immense; we really wanted to dance but it was hopeless. I tried to teach Gavin to dance to my rhythm and he tried to teach me to dance to his, but it didn’t work. We both felt that something was terribly wrong with our relationship and started to blame each other for our problems. That, of course, proved to be very destructive. It was like living with the enemy.

17

18

Alone Together

Then one day, after 17 years of struggling, we found out that Gavin has Asperger’s Syndrome. Some of the behaviours that led us to look for an answer were the following.

• He was often angry and said things that were painful. • He often seemed stressed for no real reason. • He complained about having repetitive thoughts in his head all the time.

• He wrote all his thoughts down on paper, made lists, and then lists of the lists, and in the end shredded them all.

• He said things such as, ‘Today I thought so hard my brain shivered’.

• In times of stress he suffered from dizziness to the extent he had to lie down.

• He moved his shoulders and his neck in an unusual manner whenever he had to sit still.

• He went to swim club nights, where it was dark, wearing sunglasses because the artificial lights were too bright for him.

• He walked in the snow wearing shorts and a T-shirt. • He behaved very unusually around other people: whenever we had visitors he either talked non-stop with an intensity of 500 per cent, made jokes or said things that were inappropriate.

• I always had the feeling that I didn’t really know Gavin. It was like living with a stranger. Our conversations resembled the ones that people have when they first meet. All I really knew about him was that he was good with money and loved sport.

• He often used lines out of movies when we where together. Instead of kissing him it felt as if I was kissing Jack Nicholson.

• He said things such as, ‘What is happiness, how does it feel?’. • He has a great talent with money. At 35 he has been able to retire in comfort, living from his investments. He is very creative in the world of finance and has a natural talent to gain wealth.

Becoming Aware of Asperger’s Syndrome

19

Our friends often ask him to run courses in this field and he seems surprised and says, ‘I couldn’t charge money for teaching people something so basic’.

• He often said, ‘I can’t relax because of my thoughts, until I get rid of them I can’t enjoy my life’.

• He had a way of being there in body but not in soul. • More than once he said, ‘Maybe I’m autistic’. At this time I hadn’t heard of AS, I only knew classical autism and he certainly didn’t fit the picture of that. He talked a lot when a topic interested him, and he could be very entertaining and funny with people when he felt like it. One day I sat at the computer and looked in the encyclopedia under autism. Straightaway I could see that it wasn’t what Gavin had. I kept reading until I came to a part that described a condition called ‘Asperger’s Syndrome’. It wasn’t a long paragraph, it only mentioned a few of the common signs such as difficulties in social interaction, poor eye contact, repetitive body movements and insistence on routine and rituals, all aspects of Gavin’s behaviour. It was a weak link, but I decided to pursue it further. At the time we were not connected to the internet, instead I went to the library and borrowed the book Asperger’s Syndrome: A Guide for Parents and Professionals (1998) by Tony Attwood. This book changed our life. If you think that somebody in your family has AS you should read it. It describes the condition in an interesting manner that is easy to comprehend. I started reading as soon as I got home, and there was not a doubt in my mind that Gavin had AS. It was a book about him. It described all his behaviours, right down to the fact that people with AS often marry people from overseas. I couldn’t stop reading. Tony Attwood explained the condition exceptionally well. Finally we had an answer for all our misunderstandings. I showed Gavin the book and after he’d read a few pages he said, ‘That’s me!’ He was happy and relieved to know why he’d felt so different for all those years. Our next step was to do some self-assessment tests to see how Gavin fared. As we expected he scored high in the AS range. From these tests, his behaviours and his childhood history it was very clear that he was on the spectrum. In primary school he was diagnosed as being dyslexic, dysgraphic and hyperactive after his teachers found him to be highly

20

Alone Together

disruptive. Of course, back then AS was hardly recognized and children with AS were often just regarded as being badly behaved and uncontrollable. One day while I was writing this book, Gavin’s sister called and told me that she’d seen a segment about AS on a current affair show. ‘There’s no doubt in my mind,’ she said. ‘That’s my brother.’ We were lucky Gavin realized that he was on the spectrum as it is often difficult, even for experts, to diagnose AS in adults. Since we found out we’ve attended various seminars where Tony Attwood spoke about Asperger behaviours such as:

• lack of theory of mind (not knowing what others are thinking or feeling)

• • • • • • •

the need to correct error the fact that the thoughts are not disengaged from the mouth the need to have everything their way: ‘the God Syndrome’ difficulties interpreting facial expressions and body language the need for predictability and routine the need to be right, no matter what the White Board attitude (the fact that there is a white board inside the brain, where the first information about a certain topic is written in permanent ink)

• attention to detail • volume control problems • the fact that the special interest is often a security blanket and helps to control anxiety

• • • • •

the fear of making mistakes rigid thinking truth is more important than the emotion of others lack of team skills sensory problems (people can be overly sensitive to touch, bright lights, loud noises, and the texture of certain foods)

• communication problems.

Becoming Aware of Asperger’s Syndrome

21

All these factors can lead to misunderstandings and make relationships very challenging. Life has been much easier since the diagnosis, because our expectations have changed. For 17 years all I wanted was to get a rhythm going. To me it was like the essence of life. When Gavin asked me to dance I expected him to know the waltz. Instead he kept stepping on my toes. I was confused and disappointed. He was convinced that I was wrong so I tried to change my step, but it didn’t help. Everyone was waltzing, but we danced foxtrot. He didn’t seem bothered by that, but I was. I felt lost. His steps were well thought through, safe and logical. There was nothing wrong with the way he danced; it just didn’t match up with my steps. I wanted to laugh and twirl and be creative. I was longing to be carried away by the music without having to think intensely before I took a step. His style made me feel restricted and locked in, while mine made him feel dizzy and stressed. For many years it seemed as if we had absolutely nothing in common. I was led by emotions, while Gavin was driven by logic. I was interested in people, while he was more taken by things. He loved having systems, I had none. I didn’t care if everything was in its place, for him it was essential. I thought marriage was about having a connection, for him it meant finding a person to have fun with. I loved deep conversations, he hated them. Today we have accepted that we are different and we try to learn from each other. We have created our own dance. It’s still safe and logical but I have added a few twists and turns. A twirl here and one there is fine, as long as I stop before Gavin gets dizzy. Finding out about AS has changed a lot for us. This book will show you our journey.

2. Meeting the Handsome Stranger My husband and I met in a backpackers hostel at Coolangatta in March 1987. I was a primary school teacher from Switzerland and my three-month trip to Australia was almost over. With one week to go I had decided to spend the last few days in Byron Bay. ‘I know somebody that can give you a lift,’ said one of the other backpackers, but I wasn’t interested. The idea of travelling in a car with a stranger didn’t sound appealing. ‘Come on, meet him at least,’ said the guy and pushed me towards Gavin, who was sitting on the sofa watching TV. As soon as I saw him I realized that I had met him before in the billiards room. There was something mysterious about his appearance, he somehow reminded me of ‘Barbie’s Ken’. Attracted by his good looks and intrigued by the air of distance that he exuded, I decided to drop my initial fear and ask him for a lift to Byron Bay. He seemed neither happy nor sad about it, just nodded and said it was fine, without taking his eyes off the TV screen. Confused by his indifference I sat next to him and tried to start a conversation, but he didn’t seem interested. He was watching a movie and didn’t want to be disturbed, giving me the impression that he’d rather be left alone. I decided to be quiet until the show was finished, hoping that he would be a little more approachable afterwards. My suspicion proved to be right. Once the TV was off we finally talked and got to know each other. The next day we drove to Byron Bay where we booked into a hostel and spent the days lazing on the beach. I enjoyed my time with Gavin. He was kind, good-looking and different. Before I knew it I had fallen in love with him. It was silly because I only had a few days left before I had to go back to Switzerland but, as the French mathematician and philosopher

22

Meeting the Handsome Stranger

23

Blaise Pascal once said, ‘The heart has its reasons which the mind cannot comprehend.’ My English was not good enough to realize that Gavin wasn’t an expert at deep conversations. If we ever misunderstood each other I put it down to the fact that I was Swiss and he was Australian. He was extremely kind to me and I enjoyed his intense admiration. It was as if nothing else existed – I was the centre of his world, or, in other words, his special interest. Many years later, when our marriage had become a battlefield, I tried to remember those first few days, but I could barely recall them. It was as if Gavin had been a different person back then. He was never angry, never critical and always kind. I loved the attention he gave me and was impressed with the clear-cut goals he had. He wanted to have four children, be a successful accountant and own his own home. I remember laughing, it sounded like such a sensible plan for a man of his age. When I asked him about enjoying life a bit more before starting a family, he looked surprised. What did I mean by that? There was no better enjoyment than following a logical plan to its conclusion. At the end of the week I went back to Switzerland to continue my life as a teacher in a little village near Bern. I missed my handsome stranger with the unusual eyes but as soon as I was back I started to get some of the most wonderful love letters. They were very emotional and loving and arrived as frequently as three times a week. Finally Gavin came to visit me and we travelled together through Europe. It was great. We played tennis, swam in the ocean and went out for beautiful meals at night. In the last week he asked me to marry him. To be honest, neither of us had much of an idea what a marriage required. We just knew that we couldn’t keep dating over such a great distance. Gavin decided to stay in Switzerland until the end of the year. He enjoyed being the visitor from down under. There was absolutely no pressure on him. I worked full time in a job that I loved and he could just sit at home and listen to music and wait for me to come home. If we were invited somewhere for dinner and he said something that was inappropriate, everybody forgave him, he was Australian after all. My school children loved his jokes and his high energy levels and everybody who met him found him entertaining and funny.

24

Alone Together

People with AS often play a character. Gavin was happy in the role of the ‘funny man from down under’. In those early months, I was able to enjoy the positive aspects that can be part of AS: the intense admiration; the good looks; the sensible outlook on life; the wonderful letter writing; the good humour and the high energy levels.

3. The Wedding Our marriage took place on a cold day in October 1987. The little church in my hometown was filled with people who wanted to share this special event with us. My students were ready to sing, while my friends and family were excited to see the vows take place. In Switzerland the father doesn’t lead the bride to the groom, instead the couple walks together to the altar. Accompanied by the organ, Gavin and I marched arm in arm towards the pastor, who was a dear friend of mine. I can’t remember what I felt at that moment but one of the guests sent me a letter later in which he wrote: ‘Dear Katrin, I will never forget the expression on your face while you were walking down the aisle with Gavin. Your eyes reflected such a deep felt joy and happiness that it touched me very deeply. You have clearly found the love of your life and I wish you both all the best for the future.’ Right there and then nobody would have had the slightest idea that our relationship was going to be so incredibly difficult in the years to come! The wedding went according to plan until the pastor asked Gavin if he wanted to be my husband. Instead of hearing the word ‘yes’, the guests and I were faced with silence. Everybody was holding their breath. Finally Gavin said, ‘Yeah, ok,’ as if he had had to think about it. Then he kissed me so deeply that my grandmother almost fell off her chair! When I asked him later why he had behaved in such a strange manner, he said, ‘Well I wanted to give your brother something to laugh about. You know how much he loves my jokes.’ Today I know that while I was walking down the aisle, almost bursting with happiness and emotion, Gavin felt nothing of the kind. I know that he loved me very much in his own way. We enjoyed playing sport together, loved similar food and had the same goals in life. He knew that he wanted 25

26

Alone Together

to marry me – no need to get emotional about it – in fact it seemed a perfect time for a joke. After the diagnosis he told me that situations like birthdays, weddings and other significant events make him feel uncomfortable. In these situations emotions are expected of him, but he doesn’t feel any different to usual. Our birthday happens to be on the same day. Friends often drop in with a small gift. Gavin’s reaction is always hilarious. He’d rather pretend that nobody is home. Getting presents from people makes him feel uncomfortable, it forces him to say thank you for something he didn’t want in the first place. Why get more crap to mess up the house? To give Gavin a present he likes is almost impossible, unless he writes the item down on a piece of paper with every little detail. Even chocolate and sweets are hard to buy, he only eats certain brands. If I give him something that he doesn’t like he gets angry, after all, I should have known better. The gesture of handing somebody a gift means nothing to him; on the contrary he finds it a silly custom. If he wants something he prefers to buy it himself, that way he’ll be sure that it’s right. Our friends know Gavin and are not offended when he says things like, ‘Oh dark chocolate, I hate dark chocolate, but I’ll give it to my mum, she likes it’, or, ‘Tennis balls, nice but I don’t use that brand, they are far too cheap for me.’ There is nothing wrong with Gavin’s attitude; it’s all part of his practical thinking. We all respect his wishes and simply buy him what he wants. Who says that everybody has to love surprises! Years ago in that little Swiss church I had no idea why Gavin seemed so totally untouched by the event. He was cheerful and friendly, but no different to any other day. I, on the other hand, was moved to tears by all my little students who were holding up roses to create an arch for us to walk through. I enjoyed being surrounded by my friends and family. Gavin’s little joke didn’t worry me, it matched his image of the funny man from down under.

4. The First Real Argument: I Married You for Fun, Not for Problems So far our relationship had been stress free, but once the move overseas came into sight things started to look different. A week before we flew to Australia we had our first real argument! I was working all day trying to get my class ready for the new teacher, while Gavin was at home. The date of departure was fast approaching and I started to wonder if I’d ever find time to get organized for the trip. Every night I had to attend functions and goodbye dinners and there was barely a minute in my day that wasn’t taken up with school duties. In my desperation I asked Gavin to start with the packing, but he left everything as it was and just chilled out with the radio. One evening I had enough and said, ‘What do you do all day Gavin? I’ve asked you to get some boxes ready for the ship, but you haven’t done a thing!’ Instead of finding an excuse to calm me down, he laughed in an arrogant manner and said, ‘I don’t feel like doing it, why should I? It’s your stuff that needs to be packed. My suitcase is ready.’ (It consisted of six pairs of underpants, a few shirts, shorts, some socks and a suit. His dress sense definitely needed working on.) I was devastated. Moving overseas was emotionally draining; it meant that I had to leave my beautiful home as well as my family and friends. I needed Gavin’s reassurance, wanted him to show me that we were in this together, but instead he laughed and proved that he had no intention of standing by my side in stressful situations. In his eyes there was a Katrin and a Gavin, but no us. He dealt with his problems and I had to deal with mine. One of his favourite sayings was, ‘We are all alone. It’s just easier to be alone together.’ Right through our

27

28

Alone Together

marriage the situation stayed the same. Whenever there was work that needed to be done, Gavin vanished into thin air. In the beginning I used to get annoyed and frustrated, but after a few years I learned that nothing was gained by that. No matter what I said, if he didn’t want to do something there was no way I could change his mind, so I just ground my teeth and took care of it myself. He was my husband, but he wasn’t my friend. Friends help each other in good times and bad times, whether they feel like it or not. I had no idea that Gavin didn’t know the concept of friendship. If having a friend meant helping each other out, why bother? Why take on someone else’s duties and waste energy discussing their problems? It wasn’t logical. He had no intention of being weighed down with issues that didn’t concern him. Whenever I needed his friendship he turned to me and said, ‘I married you for fun, not for problems.’ For him marriage meant having a tennis partner and travel buddy. He was looking for a wife who was slim, had clear skin with no moles, somebody who cooked well and had a pleasant personality. Even though Gavin himself could be quite aggressive, he didn’t like this behaviour in other people. To me being married meant having a partner to love and share all my thoughts and emotions with, a person who I could confide in, somebody who was my friend in fun times as well as in times of distress. Our expectations of a relationship were entirely different and for many years we failed to understand each other. Today I know that the lack of ‘theory of mind’ made Gavin unaware of the feelings of others; he was only able to look at things from his own perspective. Instead of realizing that I needed help he only noticed a change in my personality and he didn’t like that. He wanted me to be pleasant, gentle and happy all the time. Throughout the book you’ll see the same problems arising. Our marriage worked as long as everything went according to plan, which meant when there was no stress, no sadness, no sickness and no bad moods. Of course that’s an unrealistic expectation. Life is full of challenges; that’s why it’s important for couples to work as a team. Unfortunately we couldn’t do that. Whether we were moving house, facing a big clean up or had a new baby at home, I had to deal with it on my own.

The First Real Argument

29

It wasn’t Gavin’s fault; due to AS his thinking was entirely different and for that reason big tasks always caused problems in our relationship.

Gavin takes things literally One of the biggest problems in an Asperger marriage is that we expect our partners to understand the often complicated neurotypical language. Instead of asking for help I used to think that it was obvious that I needed Gavin’s input. Instead of using words I often displayed my frustration using facial expressions and body language. This was confusing for him. Confusion brings stress, stress leads to anger and anger leads to arguments. Once we reached that stage there was no hope for support – he certainly wasn’t going to help an enemy. I also used sentences with double meanings. Instead of saying, ‘I’m tired, Gavin, could you please help me pack this box,’ I said, ‘I always have to do everything by myself. So many boxes still need packing; the job will never get done at this rate.’ In my opinion that was a request for help. In Gavin’s eyes it was simply a statement. It was true, lots needed to be done, but it didn’t mean he had to do it. In essence, don’t expect your partner to be able to read your mind. It’s unfair; most people with AS have great difficulty observing what others are thinking and feeling. If you need help put your request into simple words and express exactly what you want your partner to do. Facial expressions and body language cause confusion, and double meaning sentences are often misunderstood. Use friendly words, not ‘Why don’t you get off your butt and join in!’ If you’re attacking your partner he’ll probably retaliate and start shouting at you, or walk off, then you’ll definitely have to do the job alone. Planning and organizing big tasks causes stress Due to AS Gavin experiences a lot of stress. His nervous system is constantly agitated so he strives to keep his life as problem-free as possible in order to avoid an overload. Big tasks require planning, organizing and decision making, all aspects that can lead to stress. In his attempt to stay calm, Gavin tries to avoid them.

30

Alone Together

He also finds it difficult to prioritize. Instead of focusing on the big picture he often gets caught up with little details and is unable to finish a task on time. Being aware of all this I have learnt to structure big jobs and split them up into smaller segments. If we are planning a big clean up I usually make a list of all the things that need to be done. Then we sit together and allocate the tasks. I make sure that Gavin sets himself small goals that he’ll be able to achieve successfully. He is much more exact than I am, so most jobs take him a bit longer to complete. We allocate the tasks to suit our personalities. I usually take care of situations which include lots of people, decision making, loud noises and bright lights, while Gavin is at his best when logic is required and systems have to be put into place. In essence, big tasks need to be structured otherwise people with AS feel overwhelmed and avoid them.

The lack of friendship skills Many adults with AS probably weren’t diagnosed when they were young and so missed the opportunity to learn friendship skills in their formative years. Maybe marriage is the first friendship our partners experience, that’s why we have to make sure we set a good example. Forget the saying, ‘Be a friend to make a friend’, it doesn’t seem to work when AS is present. How can you be a friend if you don’t know what it means? Everybody is different but people with AS are usually very good at copying others. I therefore try to show Gavin what a friend is by being one. It hasn’t been easy; for many years I couldn’t see why I should praise him for something while he never seemed to appreciate anything I did. I couldn’t see the point in showing an interest in his topics when he stared into thin air when I spoke. Today I know better and have changed my approach. I don’t lecture him about friendship; I simply try to show him how nice it can be when somebody cares. I take an interest in his life, share his hobbies with him, lift him up when he is down and care for him when he is sick. Over the last two years he has acquired some of those friendship skills and is now quite good at being there for me in difficult situations. His behaviour has improved immensely, but I try not to take his attitude for granted and always show my appreciation when he helps me out.

The First Real Argument

31

People with AS enjoy being successful at what they do. If you make your partner feel he is good at being your friend, he’ll be much more interested in being one.

The ‘Professor Syndrome’ (why Gavin is able to store enormous amounts of facts and information, but can’t remember to get the washing off the line) This is a major cause of misunderstandings in Asperger marriages. For years I was puzzled by the fact that Gavin was able to remember his golf scores without writing them down, the price of a pizza we had in Italy 17 years ago, and every tennis shot he’d played the previous week. As well as that he had an enormous amount of knowledge about finance and business. Numbers stayed in his brain as if they were imprinted for ever. Whether they were credit card digits, interest rates or swimming records, he was able to recall them at any time. He used to know the entire tax guide by heart, which was very helpful as he was able to advise his clients in an efficient manner without having to look things up. So why on earth did he forget to buy milk or to get the washing in when I wasn’t home? After all, I’d reminded him before I left. I used to think that he just couldn’t be bothered to help me out, but that wasn’t true. Today I’m aware that Gavin’s long-term memory is far more efficient than his short-term one. He is much better at remembering facts and information than everyday things. This seems to be common for people with AS. It’s kind of funny that Gavin needs a list if he needs more than two items from the supermarket, while he has the complete stock market in his head. Personally I’m glad that we have two different memory capacities in this household. While I remember school functions, grocery needs, dentist appointments and birthdays, Gavin is always able to hand out phone numbers, credit card details, petrol prices and so on. Today we finally work as a team. Years ago when Gavin laughed at me and left me alone with all the packing, I wasn’t aware of those issues. His attitude made me feel very lonely and it took me 17 years to find an answer for his strange behaviour. If you are wondering why your partner doesn’t seem to help out, try to look at it considering the above factors. You might discover that it’s not selfishness which stops your spouse from giving you a hand. It might just be that he doesn’t understand your instructions. Maybe

32

Alone Together

he takes things literally or is scared off by an unstructured task. He might not know that friends help each other. Perhaps he suffers from the ‘Professor Syndrome’, and forgets what you’ve asked of him. I will finish this chapter with a funny example of a misunderstanding which displays Gavin’s literal thinking. My feet were sore and he kindly offered me a foot massage. Suddenly I felt a sharp pain. ‘Ouch!’ I screamed. Gavin smiled and carried on. ‘Why don’t you stop, you’re hurting me?’ He seemed surprised. ‘Well, you didn’t tell me to stop.’ ‘Yes I did,’ I replied, ‘I said “Ouch”.’ ‘Ouch isn’t stop, is it?’ said Gavin. ‘Ouch means I’m in pain,’ I explained. ‘Well, I like pain; if you say ouch, I think that you’re enjoying it. If you want me to stop, you have to say stop!’

5. Travelling to Australia: The White Board After our first argument things settled down again and finally we were ready to fly overseas. Everything seemed fine until we arrived in Jakarta. I had no idea that Gavin’s thinking must have switched from ‘Tape B’ to ‘Tape A’. Switzerland had been a blank tape, he had no set rules for life there, but now that we were approaching Australia he reached for ‘Tape A’. Tony Attwood mentioned at one of his seminars that the brain of a person with AS often resembles a ‘white board’. Whatever information is first recorded will stay there as if printed in permanent ink. Gavin’s ‘white board’ had 20 years of information on life in Australia. The first and most important memo on it was: ‘Don’t waste money!’ In Jakarta we had to wait for a connecting flight. After a while I desperately needed to go to the toilet. I went to the rest room and discovered that I needed change to get in. Gavin was carrying all the cash, so I went back and asked for some money. He refused to give me any! ‘Wait until we get on the plane,’ he said. ‘I can’t,’ was my answer. ‘If I have to wait for another four hours I’ll wet myself.’ He looked annoyed. I thought he was just scummy, but for him it was a matter of logic. If it was free to go to the toilet on the plane, why go now and pay for it? Why couldn’t I hold on, when in the same circumstances he could? He didn’t understand. The plane trip was his first experience of travelling with somebody else on the same budget, before that he never had to consider other people’s needs. Finally he handed me a few coins and I went to the lavatory. After I came back he wanted the change. ‘There is none,’ I said. ‘I gave the coin to the woman who cleans the toilets.’ Gavin was inconsolable. Giving money

33

34

Alone Together

away and receiving absolutely nothing in return was outrageous, even when it was only 50 cents. ‘How can you be so silly and give her money. You are unbelievably stupid!’ he said. His anger shocked me. Obviously he only loved me when I did things his way. Tears were running down my face, but he didn’t care. In his opinion there was absolutely no excuse for stupidity. I was devastated by Gavin’s sudden mood change and had no idea that situations like this were destined to occur many more times in the years to come. Due to AS Gavin wasn’t aware that everybody experiences events differently and was convinced that his approach to life was the only one. His brain resembled a ‘white board’. The information on it originated from his childhood and following the imprint made him feel safe. The thought that I would make him change filled him with anxiety. After all, he knew how to live here and I didn’t. He thought he had to control my actions so we’d be able to survive in Australia.

6. The Honeymoon: Rigid Thinking! The destination for our honeymoon was Byron Bay. We rented a house and spent our days either strolling through the village, relaxing on the beach or reading books in the little garden. It was nice but different. Last time we stayed in Byron we weren’t married and I was able to be myself. Now I felt that I had to do things in accordance with Gavin’s expectations. He was very set in the way that things should be done. His rigid approach to everyday life had always worked for him and he was sure that as long as we stayed on the same track everything was going to be fine (and I mean exactly the same track). At 27 I was a totally developed adult with my own thoughts and feelings. Gavin’s lack of ‘theory of mind’, made him unaware of that. If I put two slices of chicken loaf into my sandwich, he’d say, ‘One is enough, we only ever put one in at home’. He told me how to fill ice cream cones, how to toast bread properly and how to shake the towels out after the beach. Everything had to be done in a deliberate manner. His constant lectures started to irritate me and made me feel as if I was a child again. While I accepted that he was the expert on ‘living down under’ I wasn’t prepared to fuss about unimportant matters such as how to prepare an ice cream. I found his behaviour condescending and totally at odds with my approach to life. Gavin on the other hand was sure that following the imprint on his ‘white board’ was the only road to a successful existence. One day we drove to Surfers’ Paradise and decided to have a snack there. Gavin went to buy a burger and I bought a salad sandwich and a little bottle of Coke. When I came back he was frustrated that I’d bought myself a drink. ‘Why would you buy a little bottle of Coke when you can go to a

35

36

Alone Together

supermarket and get a 1.25 litre bottle for less money? If you’d done that there’d be enough for both of us,’ he said. I assumed he’d come back with a burger and a drink of his own. It wasn’t that I didn’t see the logic of buying a big bottle I just hadn’t given it a lot of thought. Gavin on the other hand was always thinking and found it difficult to tolerate people who behaved in a careless manner. On his ‘white board’ it said, ‘Always buy a big bottle for everybody and share’ (that includes in the cinemas even if you look like a fool). I had no idea that he had a ‘white board’ and was devastated that we had to argue about the price of a drink while we were on our honeymoon. Gavin didn’t care. In his opinion I had acted stupidly and he needed to make sure that I knew it. He told me over and over again how silly I had been and didn’t stop until he was certain that it’d sunk in. Since we’d left Switzerland Gavin’s anxiety levels had increased because Australia was his home and he felt that it was his responsibility to create a comfortable life for us. My seemingly careless behaviour stressed him immensely. He couldn’t understand why I didn’t use more logic in my actions while I was devastated about the way he talked down to me. Today we have learned to come to terms with our different ways of thinking and while I try to put more logic into my actions Gavin tries to be more considerate with his comments. Even though we don’t always succeed in doing the right thing, learning from each other has been beneficial for both of us. I have become more sensible in performing tasks while he is more careful in choosing his words. Apart from the lectures on ‘life down under’, our honeymoon was quite pleasant, even though there wasn’t much romance in the air. We seemed to spend more time discussing ways of doing things than actually enjoying our time together. Today I know that Gavin has a system for almost everything. In the morning, for example, I freely pour different cereals into my bowl while he prepares his breakfast with great care. The cereal has to be placed in a certain way and the honey has to be distributed with the same spoon and in the same manner as always. Afterwards an identical volume of milk has to be poured into the bowl which is then left to stand for five minutes to ensure proper absorption. For me making breakfast is a simple task, for Gavin it’s an art form. I love watching him and admire the patience he has when he

The Honeymoon

37

performs a task. Even when he has a shower he always washes himself in the same sequence. Gavin’s great attention to detail and my lack of it doesn’t create a problem anymore. He has learned that I do things differently, not because I’m careless but because I have other priorities. On our honeymoon I was looking for romance while Gavin was more concerned with structuring our entertainment so he wouldn’t feel lost. Years later he admitted that he often copied certain behaviours. Once he had seen a TV show where a couple had watched videos on their honeymoon, so he decided to hire a VCR and do the same. He loved watching movies and was sure that I would too. I’d have preferred to do something else because I wasn’t totally fluent in English, but I didn’t say anything. I had no intention of spoiling Gavin’s fun. More than once I nodded off during the second movie and in my sleep I could hear him laugh. He was having a ball watching on his own; it never occurred to him that I didn’t enjoy it quite as much. A little more romance would’ve been nice, like a moonshine walk on the beach, holding hands, cuddling and talking about our dreams in life, but conversations weren’t Gavin’s thing. He used to say, ‘Talking is overrated’. I missed home and needed to know that I wasn’t alone in Australia, even though it felt as if I was. There was no ‘togetherness’ in our relationship. If I ever brought this up Gavin said, ‘But we are together. We’re sitting here about 10 cm apart on the sofa watching a movie.’ It was nice of him to hire a VCR and it wouldn’t have been that bad if we didn’t have to watch two videos every night. Now I can see why this wasn’t possible. Gavin had paid for seven days hire and had every intention of getting his money’s worth. On honeymoon I realized for the first time that we were very different. While Gavin believed in structure, routine and logic, I was driven by feelings and couldn’t comprehend why he placed so much emphasis on basic actions. Our personalities clashed because I was spontaneous, unpredictable and emotional and found it difficult to be confined to a world of logic.

7. Sexuality, Intimacy and Love It isn’t easy for me to discuss sexuality, intimacy and love, but they are vital aspects of a relationship and in an Asperger marriage they can lead to great confusion. In the previous chapter I talked about our lack of emotional togetherness. It felt as if Gavin and I were alone together even in the most intimate situations. When we met, I was a very emotional person. Our first sexual experiences were great, Gavin had written all those lovely letters to me and I felt close to him. As time went on, we discovered that we were very different sexually. I was more sensual, while Gavin was more sexual. I loved all the romance, the flirting, the hidden remarks, the smiles, the body language and the electricity between people, while Gavin became an absolute expert in the field of sexual techniques. He knew every trick in the book and thought the whole act through, while I just wanted to enjoy it. The problem was he expected me to become an expert too, in other words he kept telling me what I should do to make our sex life a masterpiece. This made the act a little too brainy for me. I missed the warmth, the spirituality, the sensuality and the closeness that usually comes with making love. We had fun together but our relationship lacked intimacy. In the dictionary the word is defined as ‘sharing our inner most thoughts and feelings with another human being’. Anonyms are ‘familiarity’, ‘closeness’ and ‘togetherness’, all aspects that weren’t part of our marriage. Gavin and I couldn’t share our thoughts and feelings because we had major communication problems. I was desperate to be able to connect with him, but it didn’t seem possible. It was as if he was out of reach. While this aspect of his personality was attractive when we first met, by now I was getting tired of trying to get to know him better. Gavin was happy with the 38

Sexuality, Intimacy and Love

39

way things were while I found a relationship without connection rather lonely. Intimacy means being able to relate to each other emotionally. If we can do this we experience a feeling of well being and trust that in my opinion increases the enjoyment of sexuality. Without connection there is no intimacy. Without intimacy sexuality becomes simply an activity no different to golf or tennis. While this is good enough for a one night stand a marriage requires more than that to be fulfilling. For many years I believed that the lack of intimacy we shared was an implication that there was no love, but that wasn’t true. Gavin simply didn’t need closeness and his lack of theory of mind made him unaware that I did. On various occasions I tried to talk to him about my needs, but he always seemed defensive. Accepting different opinions wasn’t his thing. Taking other peoples ideas into consideration confused him, that’s why he generally blocked them off and claimed that they weren’t valid. He had enough stress in his life and had no intention of adding more. While we weren’t able to connect verbally we also struggled in the non-verbal field. Trying to evoke someone’s sexual interest is a complex process. It usually involves body language, facial expression and eye contact. Flirting helps to create a sensual atmosphere and can enhance electricity and excitement, both aspects that benefit an intimate encounter. Due to our communication problems flirting wasn’t an option. The wish to be together can be expressed with looks, postures and touches, but Gavin couldn’t read my body language and I struggled to understand his. The fact that we had no idea what the other was feeling or thinking confused us and didn’t enhance sensuality. While a ‘ready, set, go’ atmosphere is good enough for sport it’s not the best way to start a sexual encounter. If we feel like playing tennis all we have to do is ask the partner if he wants to join us. It’s an activity that doesn’t require a lead up. Making love on the other hand is a little more complex than that. For years Gavin wanted to convince me that it wasn’t. In his eyes it didn’t differ from any of his other hobbies. It was something he enjoyed and longed to master just like football, golf or tennis. In his opinion sex was fun, emotions only complicated the act. I was a bit offended by his attitude, but he didn’t seem to care. Having no theory of mind regarding others and not being able to read body language and facial

40

Alone Together

expressions made emotional issues very confusing for him. Confusion leads to stress and stress doesn’t enhance love-making. That’s why he believed that it was best to leave emotions out of the picture. While this approach worked for him I craved for a bit of romance. The simple question of whether I wanted to have sex, play golf or play tennis made the whole act far too realistic for me. Since the diagnosis our love life has improved immensely. Of course we still have a different approach to sexuality, but so do most men and women. It doesn’t really matter as long as we make sure that both partner’s needs are met. Gavin has learnt that intimacy is an aspect of sexuality that I enjoy and tries to accommodate my need for it by occasionally sharing his thoughts and feelings with me. This has brought us so much closer and of course has been beneficial to our love life. While he makes allowances for my wishes I try to consider his. I have now adopted a much more humorous approach to sexuality and don’t expect a violin concerto to put me in a romantic mood. The key to a better love life is, no doubt, communication, especially if there is an absence of theory of mind. Not being able to rely on intuition makes it vital to express feelings, emotions and wishes verbally. If we can’t do this we’ll continually make wrong assumptions about our partner and face misunderstandings that are detrimental to intimate encounters. Since Gavin and I have learned to communicate we feel much more at ease with each other and often laugh about our different approach to sexuality. It’s not a bad thing as long as we can find some common ground that leaves us both happy. Recently I have learnt that Gavin differentiates between sex and making love. He sees them as two different activities with only a physical overlap. Sex is something thought through and fun, full of fantasy, which aims to produce the greatest level of excitement and enjoyment. Making love, on the other hand, is an intimate encounter which achieves its excitement through sensuality.

The question of love Years ago we didn’t have the possibility to communicate and were truly alone together. The fact that I was so far from home made matters worse. Gavin was the only person I knew, and somehow I expected him to give me all the love and warmth that I needed. That must have been quite a pressure

Sexuality, Intimacy and Love

41

for him, most people get love and affection from a variety of sources, such as friends, workmates and family. He must have felt that I was missing something, but had no idea what it was. After all he was a faithful husband who looked after me financially and gave me a nice home to live in. I have no doubt that he loved me dearly in those early years. He just didn’t know how to show it. Little things like the keys being out of place, the lasagne that was too soft, or that I had paid two dollars for strawberries when another shop sold them for one, made him lose his balance. It was as if his love was there one minute and gone the next, depending on the circumstances. In reality that wasn’t the case, but we neurotypicals seem to have quite a definitive picture on how people that love each other should behave. A few behaviours that neurotypicals generally expect from a loving partner are:

Being an interested and caring listener This isn’t an easy task for people with AS, as they often have difficulties concentrating unless the conversation is about their favourite topic. Gavin always wanted me to listen to him but, when I spoke, he soon lost interest. He much preferred to talk about facts rather then feelings and didn’t see the point in talking about things that didn’t interest him. Facts were safe; feelings meant stepping into unknown territory. Being a caring listener means looking interested, in other words it includes eye contact. To make sure that we are understood we often look into our partner’s eyes for reassurance. If the person we talk to is looking away we assume that he isn’t listening. That’s not the case for most people with AS. They often find eye contact distracting and try to avoid it in order to concentrate on what’s being said. While eyes enable us to see we can also use them to display emotions. That’s why they are often referred to as ‘the windows to the soul’. Gavin’s eyes never told me anything. They were beautiful and green, but totally without expression. It was as if they were made of glass. Sometimes it worried me because it looked as if ‘nobody was home’. I used to say, ‘Gavin, what’s wrong? You look as if you hate me.’ Of course that wasn’t true, his emotions just didn’t reflect in his eyes. It was as if he’d closed the shutters for a while.

42

Alone Together

We’d like to feel confident in our partner’s presence and be loved for who we are This again can be difficult for people with AS. The need to correct error, the excessive attention to detail, the need to tell the truth, the urge for routine, the sensitive taste buds, the thoughts that are connected to the mouth and the fear of being wrong are not exactly behaviours that make a partner feel loved. I don’t think Romeo and Juliet would have had much of a chance if he’d said that her clothes made her look fat, that she had a messy bedroom and that the food she offered him was disgusting. The love affair would never have bloomed if, in looking for routine, he’d said, ‘I can’t visit you tonight, I only visit people during the day.’ When neurotypicals first meet, they load each other with compliments. I personally don’t like that, it seems fake. On the other hand I find it hard to relax in someone’s company when they criticize me constantly. I will talk about the need to correct error in a later chapter. For now I’ll just say that being criticized doesn’t create harmony, instead it undermines the confidence of the partner. Gavin seemed to be constantly upset with me and expressed it in a blunt manner. What surprised me though was that sometimes, soon after he’d been annoyed, he would turn up a love song on the radio and say, ‘Listen to that song. That’s how I feel about you’. I didn’t understand how he could talk about love, when he seemed constantly irritated with me. It’s important to remember that people with AS don’t intend to cause harm with their words. They just don’t see the need to beat around the bush. It has nothing to do with a lack of love.

We’d like our partner to show compassion when we’re sick I still remember the first time I was sick in my married life. Over dinner I told Gavin that I didn’t feel well. I didn’t expect him to make a big deal about it, but his reaction certainly came as a surprise. He didn’t say, ‘Come here and let me feel your head,’ or ‘Would you like a cup of tea?’ All he said was, ‘If you are sick go to bed, that’s what sick people do, why talk about it?’ I didn’t know that he had AS and was surprised that his facial expression didn’t change and he showed no sign of empathy. He couldn’t see why I would want to stay up and be miserable. Having AS meant that Gavin wasn’t able to put himself into somebody else’s shoes. The only way he could look at things was from his own per-

Sexuality, Intimacy and Love

43

spective. He judged events by how they affected him, not because he was heartless, simply because he knew no different. His approach to situations was always entirely logical. If one is sick, one needs to go to bed. This is exactly what he would do under the same circumstances. He wanted to help me by pointing me in the right direction, but I wasn’t aware of that. The message I received was ‘I don’t love you when you’re sick, stay out of my way until you’re better.’ It was a misunderstanding. Since the diagnosis Gavin has learnt to show me that he cares. Here is a little incident that happened about a month ago. It shows how things have changed for the better. I had a really funny feeling in my throat, like it was swelling up or something. I told Gavin about it and went to bed. Five minutes later he came to check on me. ‘Are you okay?’ he asked. I nodded, but told him that the whole thing worried me a bit. ‘I’ll come back and check every five minutes,’ he said, and he did, giving me cuddles and making me feel safe. That night I slept like an angel.

We expect partners to be there for us in times of distress Gavin hated other people’s worries, he had enough of his own. Whenever I seemed concerned about something he became agitated. There was no reassurance, no ‘Don’t worry darling, it’ll be okay’. It was either, ‘Why worry about something so stupid’, or ‘I have enough worries of my own, I don’t need yours, after all I don’t expect you to solve my problems’. He didn’t realize that I would have been honoured to help him. More then once I offered my advice when he seemed troubled, but he didn’t show any interest. He was self-sufficient and didn’t rely on others. His confidence reassured him that he always knew best what to do. For me a relationship meant sharing thoughts and finding a solution together. His avoidance of being there for me in difficult situations gave me the feeling that I wasn’t loved, but of course that wasn’t true. Gavin simply couldn’t afford to add more stress to his life. Living with AS was difficult enough!

We would like to share moments of intimacy with our partner Looking back to situations in those first years in Australia we often laugh. Sometimes after a night out we came home and Gavin headed straight for

44

Alone Together

the bedroom. Trying to create an intimate atmosphere I’d say, ‘Let’s just sit here for a while, light a candle and talk.’ Gavin’s response was, ‘Why waste a candle and make a mess at this time of night? Who wants to talk?’ Having a loving chat in the candlelight can bring people closer together, unless they are like Gavin. Talking usually starts a line of thought for him and so acts more as a stress factor then a relaxing activity. My request for a heart-to-heart late at night was unreasonable. Conversations about emotional issues were Gavin’s worst nightmare. It was as if I’d asked a student who regularly fails in mathematics to complete an algebra exam just before bed.

People with Asperger’s Syndrome express love differently This fact leads to huge misunderstandings. We must remember that translating the behaviour of our AS partners with the help of a ‘neurotypical dictionary’ doesn’t work. For many years I was convinced that Gavin didn’t love me. He said that he did, but his behaviour showed me otherwise. Feeling unloved can have terrible consequences. It can lead to low self-esteem, anger, depression, feelings of guilt, loss of self, anxiety, phobias, mental and physical health problems, weight gain or weight loss, a weak immune system, etc. It can make us bitter and unhappy. That’s why it’s important to clarify the question of love. If you are married and think that your Asperger partner doesn’t love you, think again. Would he really hang around just to please you? Being with somebody else isn’t easy for him; the fact that he chooses to share his life with you means that he enjoys your company. Have you showed him lately that you love him, or have you started to dislike him because he doesn’t seem to have feelings for you? Do you pick on him to show him how it feels? Don’t forget that even though constant rejection can lead to great resentment on our behalf, tactics like these will not bring improvement. If your partner has AS he might not be able to show you his love in the usual way, this doesn’t mean that it’s not there. The good news is behaviour can be learnt. I’ve heard partners say, ‘He only does those things because I taught him to, not because he loves me.’ I don’t believe that. In my opinion it’s not possible to teach somebody to love another person, but you can teach ways to show it.

Sexuality, Intimacy and Love

45

To have a happy marriage we have to learn what makes our spouse happy and try to respond to each other’s needs as well as we can. If you have a partner with AS don’t think you aren’t loved, it’s just not easy for him to show it. Try not to make him feel like a failure when he doesn’t behave as you’d expect him to. It’s difficult to learn under pressure and people with AS don’t like to make mistakes. Showing love requires body language, facial expression, compassion, intuition, tolerance and understanding. It’s a very complex process. Imagine trying to show somebody that you love them, while your hands are tied behind your back, you’re wearing a blindfold and have tape over your mouth stopping you from speaking! Movie lines such as ‘I know exactly how you feel’, ‘we are so alike’ or ‘I could spend every minute of the day with you’ aren’t often said in an Asperger marriage, but this doesn’t mean that couples can’t find happiness. On the contrary, Gavin’s constant effort to show me love the way I understand it is much more valuable to me than anything else. I’m thrilled that after years of being ‘alone together’ we can finally share moments of togetherness.

8. Making Friends Friends have always meant a lot to me, much more than things. Our fridge door is full of magnets with sayings such as, ‘A friend is someone that reaches for your hand and touches your heart’, ‘Home is where your friends are’, or ‘Friends are the flowers in the garden of life’. Gavin had a different approach to friendship. For him a friend was somebody that gave him a great game of tennis. (If the friend stopped playing well he no longer served a purpose!) When we came to live in Brisbane I found it very hard to create a ‘garden of friends’ for Gavin and me. The fact that I was a stranger didn’t help, the cultural difference made it difficult to find people with similar interests. I looked for work, but most jobs required younger people and a fair amount of experience. Teaching was out of the question, as I didn’t fancy going back to university to repeat my studies. I felt lonely, useless and trapped. For the first time in my life I had too much time on my hands. After a while I decided to join a gym, but everybody there seemed preoccupied with losing weight. They all had their circle of friends and didn’t need any more. I missed my teaching days, my life in Switzerland and the school children. Before my departure I’d started to write a novel about a little girl who travelled to Australia. My pupils had enjoyed the story and begged me to complete it and send it back to them. With that in mind I started to write, glad to have found something that occupied me all day and helped me cope with the loneliness that I felt. At night I cooked for Gavin and me, and then we watched TV. He enjoyed it, while I was craving for some company. My life in Switzerland had been entirely different. Back home I used to spend my leisure time with friends. We chatted, laughed, played tennis, strolled through the city

46

Making Friends

47

or went out for dinner. I loved people and found it hard to cope with this exceptionally structured and lonely life. I didn’t write home very often because I had nothing to write about. We had to save for a house and hardly ever went out or did anything special. Gavin worked in an accountancy firm in the city at the time and had his interaction with people there. When he came home he just wanted peace and quiet. Now I know that being surrounded by people all day must have been exhausting for him. He desperately needed to chill out in the evening. I, on the other hand, felt as if I was living in a vacuum. Sometimes I invited people for dinner to improve our social life. I had no idea that those occasions were stressful for Gavin, he never said so. It wasn’t until recently that he commented: When I’m in a group of people I always feel like a spectator to a show who has been invited along as a special guest. I’m never quite sure when I’m supposed to talk or if I’m supposed to talk. While everybody else seems relaxed and comfortable, I’m left wondering when it will be my turn to say something. Others don’t seem to have this problem; on the contrary they look totally at ease while they chat together. The flow of their conversation follows a rhythm. A bit of talk, a few giggles and then more words… I don’t get it. If I join in the banter the rhythm of the conversation changes, it becomes less relaxed and more disjointed. I seem to bring a level of intensity with me that others aren’t comfortable with and as I begin to feel this I make comments that completely alter the mood. My uncertainty about what to say and when to say it makes social occasions highly stressful.

I wish Gavin had shared these thoughts with me years ago, but he didn’t, instead he hid his insecurity behind a mask of knowledge and humour. Around others he turned into a talking machine, nobody else was able to get a word in. He was very knowledgeable when it came to money, politics or sport and what he had to say was definitely interesting. However, the intensity was overwhelming and wore the listeners out. He seemed to have only two modes of discussion, information about his special interests and jokes. Unfortunately he often made jokes about the guests, teased them and made sarcastic remarks. He didn’t mean to cause any harm, but it looked as if he was deliberately trying to annoy everybody.

48

Alone Together

Before the guests arrived he was always full of good intentions, but as soon as he was surrounded by a group of people he started to make inappropriate comments. I thought that he did it on purpose, but I was very wrong in that assumption. Having AS meant that being part of a group was highly stressful for him. He found it unsettling and had a desperate need to calm down. I now understand that inappropriate behaviour works as a very quick and efficient stress release. Gavin’s comments were mainly triggered by the fact that he needed to relax his overstimulated nervous system. He didn’t intentionally offend others; his words came out before he was able to stop them. Before I was aware that Gavin had AS I used to get really upset about his insensitivity. I found him tactless and rude, especially when he cracked jokes about topics that were precious to others. One day, for example, a friend’s dog died and Gavin said, ‘You should consider it a bonus. After all, dogs have no real purpose, they’re just one more thing to worry about.’ He was forever upsetting others and we never really had friends for more than a few months. It made me sad as I was dying to have some special people in my life. Of course my behaviour didn’t help. Whenever he made inappropriate remarks I got annoyed and gave him an angry look. He then turned to the guests and said, ‘I shouldn’t have said that, now Katrin is upset with me.’ This made me look like a bossy wife who tells her husband what to do. The guests felt the tension between us and the atmosphere was ruined. The other day I asked Gavin, ‘Why do you stir people up? Do you enjoy upsetting them?’ He looked puzzled. ‘No of course not, I don’t like hurting others, unless they irritate me, then I feel the urge for a little needling and can’t help what escapes my mouth.’ After a failed invitation Gavin often blamed me for everything and made comments such as, ‘It was you who wanted to invite those people. I don’t need visitors, they just increase the workload. Now we have all these dishes to wash.’ Recently we had dinner with friends and Gavin suggested that we take everybody’s heart rate because he felt agitated. Mine was 56 and his was 98. His normal resting heart rate is 70! This shows that being in a group isn’t relaxing for him. As soon as others are involved his stress levels multiply exponentially!

Making Friends

49

Communication with neurotypicals is no easy task for an Asperger. It’s like walking in a mine field, one wrong step and you’re gone! Funnily enough, the harder Gavin tries to be on his best behaviour, the quicker he seems to overstep the boundaries. The pressure of saying the right thing makes him anxious. If he feels that people are annoyed with him he gets confused, this leads to greater stress and becomes a vicious circle! Now that I am aware of Gavin’s social stress I try to remain calm and relaxed in those situations. Today we only socialize with understanding friends, who don’t judge him for his sometimes unusual behaviour. Gavin was 37 when he found out that he had AS; before that he experienced years of being misunderstood and alienated. While friendship wasn’t the most important thing to him, he certainly didn’t want to be disliked. Maybe his jokes gave him a few points among his peers and that’s why he uses them today on social occasions. He feels appreciated when people laugh. The other day he explained his social stress by saying, ‘Nobody seems to comprehend why I get so stressed and confused in social situations. People are aware that I speak very articulately and with great confidence. They have no idea that even though I can talk so well, I have great difficulties with understanding. That’s why I keep dominating the conversation. As long as I speak I feel okay.’

Helping your partner cope with social occasions It is difficult enough for a person with AS to relax in social settings, so any advice has to be kept simple. We have developed some basic guidelines to assist Gavin in his interaction with others. These help him to avoid friction and therefore make him more comfortable.

• First and foremost, don’t joke about other people or their lives. • Second, if you are talking about your special topic make sure you take breaks so that others can join in the conversation. Letting everybody be part of the discussion prevents people from getting bored or frustrated. A conversation always involves more than one person, otherwise it becomes a monologue.

50

Alone Together

• Third, don’t think that when you aren’t speaking no one else will. Some quietness is fine around friends, and soon someone will start a new topic.

• Fourth, do not make inappropriate remarks about sexuality – not everybody is as open-minded as you.

• Last but not least, don’t disappear and read the ‘tax guide’ on the toilet (something Gavin used to do at dinner parties when he felt stressed). Some other helpful hints:

• Don’t expect to have all of your social interaction as a couple. Don’t hesitate to do things alone with your friends.

• Invite people who are not overly judgemental. • We often play board games with guests. That gives the night a structure and doesn’t stress as much as small talk.

• Try to stay relaxed even if something goes slightly wrong. • Don’t forget people with AS can be really fun and interesting to be with when they are relaxed. Today we have many friends and they all like Gavin and find him very entertaining. This proves that with a bit of tolerance and understanding from others, people with AS who are prepared to make an effort can learn to socialize and enjoy it. Moderation is, of course, the key. I have included a few classic examples of attempted compliments by Gavin that went wrong. They may even be familiar to some readers.

• ‘You lost a lot of weight, Jen. Last time I saw you, you looked like a fat mamma!’

• ‘That was a lovely dinner, Sandra, not like last time when we had take-away!’

• ‘These shorts look good on you, Kathy. The other pair made your legs look like tree trunks!’

Making Friends

51

• ‘That was a good hit of tennis, Jack, much better then last time when you could barely hit the ball!’

• ‘If I had friends you’d be one, but I only have acquaintances.’ • ‘Your wife’s diet really worked, when are you starting yours?’

9. Starting a Family: Empathy and Theory of Mind Two years after we arrived in Australia I gave birth to our son Marc. After five hours in labour the midwife asked Gavin if it had been difficult for him to see me in so much pain. He nodded. ‘Not really, lots of women have babies, it can’t be that bad. To be honest I found it rather boring, it seemed to take forever!’ He didn’t mean to sound uncaring, but due to AS he was only able to look upon events from his own perspective. Watching me give birth had made him tired, it was after midnight and he would have preferred to sleep. It never occurred to him that the birth had been painful and exhausting for me. Instead he felt sorry for himself for having been up all night. It certainly wasn’t like in the movies where the husband is moved to tears when the baby is born and then hugs his wife and tells her how proud she has made him. Gavin always stays rational and his actions remain logical and practical. He is rarely overcome by emotions. If I had to draw him, I would draw a picture of a brain; if I had to draw myself it would be of a heart. Gavin and I have learned to combine the two pictures and use his logical thinking in the right places and my heart in others. (This doesn’t mean that I have no brain and he has no heart!) Now, back to the day when our first baby was born. Gavin was very proud of his beautiful son and started to chat with him as soon as the midwife put him in his arms. The expression on his face resembled one of a child that had received a new toy. He played with Marc’s little hands and feet and finally tossed him slightly in the air. ‘Stop!’ screamed the midwife. ‘Be gentle with the baby, it isn’t a football.’ Gavin was embarrassed, he

52

Starting a Family

53

didn’t mean to do anything wrong, he was just happy to have a little son to play with. He had no idea that this bundle in his arms was not just a playmate, but a little person full of emotions, thoughts and feelings. A child that was going to look up to him for help and leadership in years to come, a boy that needed his father to understand him and be his friend. Here are a few funny events that display Gavin’s lack of ‘theory of mind’. Five days after the birth I was allowed to leave the hospital for a few hours and asked him to bring me some clothes so we could walk to the ice cream parlour. He showed up with a pair of skin-tight size 8 jeans and a Mickey Mouse T-shirt. Even though I hadn’t gained much weight during the pregnancy, my chances of fitting into these pants were small. I really wanted that ice cream though, so I tried and with a lot of squeezing I managed to close the zipper! The whole ward laughed, it must have been a comical sight. Clearly Gavin hadn’t given much thought to the choice of my clothes. He must have reached into the cupboard and grabbed whatever was on top. Or maybe he did look but thought that a woman loses her tummy immediately after the baby is born. Who knows? All I can remember is that walking in those tight jeans was quite painful, not to mention the funny looks and giggles I had to endure. Of course I couldn’t move as fast as usual, but Gavin didn’t understand why. ‘Can’t you hurry along a bit,’ he said impatiently. ‘I can’t walk any faster,’ I replied. ‘The stitches are still quite painful.’ He looked surprised, the thought of pain after the birth had never occurred to him. He must have felt a bit silly so he just gave me an arrogant look and said, ‘Come on, stop whingeing.’ Tears appeared in my eyes and I was terribly hurt. I wondered why he wasn’t more caring. Now I know that it’s very hard for Gavin to understand how somebody else feels, especially when it happens to be something that he hasn’t experienced himself. Obviously giving birth was not in his repertoire. Of course, he didn’t bring presents or flowers to the hospital, but his family did. They made me feel a bit special. Gavin saw no need for that. Flowers die, and presents…? Well, it wasn’t my birthday, was it? He came and visited me every day after work, but he didn’t talk much. Instead he watched the cricket on my bedside TV and ate Chinese food that he’d bought on the way. Every night it was the same, fried rice with sweet and sour sauce. While he was happy to get himself dinner he never brought

54

Alone Together

me anything. After all, I was the lucky one being looked after in hospital while he had to struggle on his own. I didn’t mind. Having him there was cosy even though it wasn’t quite like having a visitor. Finally I was allowed to go home. My mother-in-law came with us, to help out for a few days. Gavin hadn’t shopped, so he kindly ordered pizzas. We were all very hungry and found it hard to wait until they were delivered. When they finally arrived Gavin opened the box and discovered that some of the cheese was stuck to the cardboard lid! My mother-in-law and I were dying to eat. ‘Don’t worry,’ we said. Gavin, however, wouldn’t listen. Under no circumstances was he going to eat crap like that! He sent the pizzas back and we had to wait another 45 minutes.

10. Babies and New Mothers are Unpredictable: Coping with Change At first everything was wonderful! Marc was a beautiful baby who slept a lot and was easy to care for, until he developed reflux. From then on he was often unsettled and in pain. As a first-time mum I was not experienced and worried about his frequent crying. Gavin wasn’t used to this side of me and didn’t know how to handle the situation. Instead of supporting me he resented the fact that I was stressed. He wanted things to go back to normal. Even though he loved to have a family of his own, he wasn’t prepared to accept the changes that occurred. He needed routine and predictability in his life and the new baby was jeopardizing this. The thought that parenthood could be challenging had never before entered his mind. I have spoken with a lot of people in Asperger marriages and we all agreed that whenever our life becomes challenging our spouses increase the stress by being difficult. They don’t seem to be able to provide support. On the contrary, their presence usually makes matters worse. This might sound bad, but it’s totally understandable. People with AS are constantly stressed and have quite a considerable amount of anxiety within. In difficult situations the stress added to that which already exists leads to an overload of the nervous system and in many cases to a meltdown. It’s very important to remember this. Our partners aren’t just selfish when they refuse to deal with problems. They are simply not as resilient to stress, because they’re already agitated from everyday life. Try to picture two cups both containing stress. Your cup is maybe a quarter full and your partner’s three quarters. If you add the same amount of stress to

55

56

Alone Together

each cup it’s obvious which one will overflow first. This doesn’t occur because one cup is faulty. It’s simply a matter of quantity. Constant lack of support is a big issue in Asperger marriages, that’s why I’d like to extend this a bit further with another analogy. Imagine that you are going for a hike in the mountains with two other couples. You are planning to stay overnight in a hut and return the next day. The climb up to the summit is very hard and strenuous. Your girl friends, who are wearing sandals, soon feel exhausted and the husbands decide to give them a piggyback. You’re also tired but your partner doesn’t seem to care, instead he lets you drag him up the hill. You might be annoyed and resent the fact that you have to climb up by yourself, but don’t forget in the end it will make you stronger. If you climb a mountain knowing that your husband suffers from asthma, you wouldn’t expect him to carry you. Instead you would slow down and make sure that he doesn’t exhaust himself. You’d realize that in pushing him to accelerate or, even worse, carry you, he might suffer an asthma attack. Surely you wouldn’t want that. So don’t expect to be carried, instead wear good shoes, take food and drink along and be strong enough to reach the summit without your partner’s help. Don’t concern yourself with the giggles of the other couples. You will be the one laughing once you reach the hut and start to play Trivial Pursuit. Thanks to AS your partner might know more answers and help you win the game, or he’ll cook a great meal for everybody. We all have our strengths. Forcing others to do things that are too difficult for them only leads to stress and failure. Take the good with the bad, in the end it balances itself out. Of course in those early years I wasn’t aware of this and found it hard to care for my reflux baby without any support. Gavin didn’t like the changes that parenthood had brought to his life. Everything seemed different now and he couldn’t cope with that. I was now a mother as well as a wife, which meant that he wasn’t the sole focus of my attention anymore. This confused him. Before we had Marc I was always content and peaceful when he came home from work. Since I had become a mum, he never quite knew what to expect. If I had a good day I was happy, but when Marc had a sore tummy I was stressed. Gavin couldn’t deal with this. As I mentioned in a previous chapter he always wanted me to be the same, but of course this wasn’t possible. I couldn’t always be peaceful, understanding and happy. I don’t think he understood that marrying

Babies and New Mothers are Unpredictable

57

somebody was not the same as purchasing a lamp or a painting. A lamp can be turned on when light is required, otherwise it just stands there and doesn’t get in the way. A painting never changes, it always appears the same. If you feel like looking at it you can, otherwise it just hangs there and brightens up your house. Things don’t require much attention. They are simply there when we need them. People, on the other hand, are totally different. They change! Sometimes they are happy and fun, and other times they can be worried, confused, frightened, angry or sick. The world of emotions is very complicated for people with AS, they don’t know how to deal with the mood changes of other people. Recently a young lady with AS asked me: How do I know what to say so I don’t offend others? Everybody is so different, while one person laughs at my jokes another person hates them. Even worse, one day a person laughs at my jokes and the next day the same person gets upset with me for being funny. How can I know what others want from me? When am I meant to be understanding and when can I be entertaining?

If we think about emotions in a logical way we soon realize how complicated it would be if we couldn’t use intuition to help us along. People with AS don’t have this privilege, they have to deal with emotions in a logical way. This makes interaction with others very challenging. Gavin needed me to be the same to have some predictability in his life, but I didn’t understand this. I had no idea that all the emotions I felt as a new mother were unbelievably confusing for him. Instead I was hurt that he only seemed to love me when I was happy and easygoing. I didn’t always want to be calm and collected, but I had to be, otherwise things didn’t work between us. It isn’t easy for partners always to be content. We need to be able to have ups and downs; they are part of being human. Even though our partners wish we wouldn’t have so many emotions, we need to hold on to them as they are a vital part of who we are. Admittedly I didn’t cope very well as a new mother. Often dinner wasn’t ready, and if it was, it wasn’t quite cooked the way Gavin liked it. Things were out of order and I wasn’t as easygoing as I was before. In a chaotic environment where things were unpredictable, Gavin couldn’t function. He wasn’t able to express that, so instead he stayed longer at work and left me to

58

Alone Together

battle alone. He saw no point in hanging around. Life at home was difficult, so he decided to make his job his special interest. At this time he was employed as a financial controller in a car accessory chain and multiplied their profit enormously within 12 months. As an expert in finance working in this field gave him great satisfaction. In the office everything was structured, he was in charge and could do things his way. When he was there he worked 200 per cent, but when he came home he was tired and stressed. Everything that was out of place annoyed him and there was no shortage of things for him to pick on. We were both worn out, me from waking up early to care for Marc and him from working. This led to many arguments. As time went on Gavin stayed longer and longer at work and justified his absence by saying that he was doing extra hours so we could have a better life. Of course we didn’t. All I remember from those first years is that I felt scared, confused and totally alone.

A quick look on how things have improved over the years I understand now that Gavin needs a well-structured safe home environment where things are in place. He needs to have chill-out time and finds it difficult to deal with change, unpredictable situations and stressed people. All those factors increase his anxiety and can lead to a meltdown. I’m aware that due to AS he experiences a lot of stress and can’t absorb much more. I, on the other hand, need to be myself, a real person not a painting. Today I am able to express how I feel and Gavin doesn’t get stressed when I’m sometimes down. He now realizes that this is a normal aspect of life and that I don’t expect him to come up with a solution. Knowing this removes a lot of anxiety, which means in the right circumstances Gavin can now be supportive.

11. Arguments Need to be Resolved: Being Married to a Non-Communicator Our marriage went rapidly downhill and reconciliation seemed impossible. The daily arguments we had were very tiring. Gavin was a fierce fighter who was never wrong. His lack of theory of mind made him unaware of how I felt, and his one-track mind made it impossible for him to accept opinions that differed from his own. An argument was like a battle for him, a war about right and wrong. He always left the scene as a winner, anything else would have implied failure and that was something he couldn’t tolerate. In the heat of the moment he said things that hurt me terribly. Maybe this occurred because his thoughts weren’t disengaged from his mouth, or maybe it was simply meant to be inappropriate and work as stress relief. I really don’t know. No matter what the cause, it certainly didn’t do me any good. It made me lose confidence and strength, both attributes that are essential in order to lead a healthy life. Gavin’s bluntness was enormously painful and left me emotionally drained and depressed for hours afterwards. When my mother came to visit us in Australia she was surprised to see how much I had changed. ‘You are so thin, Katrin,’ she said, ‘and where is the sparkle that you used to have in your eyes?’ I couldn’t explain how difficult my new life in Australia had become and I didn’t want to worry her. Instead I pretended everything was fine. I still loved Gavin, but deep inside I felt trapped. I wanted to laugh and cry and be silly. I longed to be with my

59

60

Alone Together

friends back home and enjoy the warm feeling they gave me. My married life here was lonely and filled with arguments. What made it worse was that we never resolved our issues. Gavin didn’t believe in dwelling on the past and expected me to simply move on, but of course I couldn’t. Our problems didn’t magically disappear. Instead they piled up and started to make me resent him. I didn’t want this to happen, but it was unavoidable. Many times I tried to talk to Gavin but he wasn’t interested. As soon as he sensed a discussion about personal issues he blocked it out by making comments such as: Why are you bringing this up when I’m happy for once? You love to dwell on the past and be miserable. It must give you joy to drag me down to your level. All this depressing talk of yours is ruining our marriage. I’ve just about had enough of your whingeing.

He blamed me for all of our problems. The truth was that we simply couldn’t communicate. I don’t mean that literally, we still spoke about everyday things, but never about our relationship. It was as if Gavin had a list of topics that were open for discussion. Everything else was to be left alone. Our arguments stayed unresolved because we never talked about them. They were forbidden territory. For Gavin they belonged to the past and didn’t have to be discussed again. Disagreements don’t have to harm a relationship, as long as we sort them out and try to reach a mutual understanding. Due to our massive communication problems we couldn’t do this. I found it unbelievably frustrating and it started to ruin our marriage. For readers with AS I will explain this with an analogy. Holding a marriage together is a bit like looking after a car. At the start it’s easy to drive, but the ride isn’t always smooth, from time to time parts will break down. This doesn’t mean that it won’t drive anymore. For a while you’ll be able to pretend everything’s fine, but after a few weeks the car might stop in the middle of nowhere. Parts that are damaged have to be repaired in order to keep the vehicle in good condition. If you ignore problems, they’ll get worse and worse until the car is beyond repair. It’s no different with a

Arguments Need to be Resolved

61

marriage, it needs to be maintained and looked after. If there are too many unresolved issues it will eventually break down! Gavin and I almost reached that point in those first few years. While I desperately tried to work things out, he had no intention of making a contribution. Instead he buried himself in work. Countless times he said he’d be home at six but didn’t arrive until eight, only to eat dinner and then go back to the office. One Saturday I said that I needed the car to fetch groceries. ‘I have to go to the office quickly. Why don’t you walk to the shops and I’ll pick you up later,’ suggested Gavin. I wasn’t in the mood to argue. ‘Can you be there at two?’ I asked. Gavin nodded. Later I pushed the pram with little Marc to the supermarket and did my shopping. At two I was finished and went outside to wait for him, but he was nowhere to be seen. After ten minutes Marc got bored and the ice cream started to melt. I waited another 15 minutes then I walked to the phone box and rang Gavin to see where he was. He cut me short, ‘I’m in a meeting with my boss. Call me later,’ he said. I was furious. Not only did he let me wait outside the shops for ages, he didn’t even feel bad about it. I should simply have ordered a taxi, but in those days I didn’t dare. It was too expensive and would only have added to our problems. So instead I waited and at three thirty Gavin finally turned up. He didn’t dream of apologizing. Saying sorry would have meant admitting fault and this was impossible. I told him that I wasn’t happy to have waited for so long. He didn’t seem to care. Instead he got angry and said, ‘I can’t help it when my boss wants to talk to me. My job is more important then your silly groceries.’ While an apology would have improved the situation his blunt comments made matters worse. After this little episode I’d had enough. As far as I was concerned our marriage was over. I had lost my will to fight, and was ready to go back to Switzerland and start a new life with little Marc. It seems destiny had other plans for us. A few weeks earlier Gavin’s employer had won a promotional trip to Malaysia, all expenses paid. He offered it to us and although I didn’t really care to go, Gavin convinced me that it would be good for us to take this opportunity. I decided to give our marriage one last chance, hoping the holiday would help us patch things up. Gavin on the other hand thought that if we had some fun, our problems would disappear.

62

Alone Together

Once we arrived in Malaysia we enjoyed the sporting facilities and played lots of tennis. At night Gavin went to sleep with Marc, while I caught up on some social life. I enjoyed meeting people from all over the world. There was dancing, acting, music and laughter. I was happy and relaxed. For the first time in years I felt that I was myself again. It would have been fun to enjoy all this with Gavin, but the night life didn’t interest him. He would rather sleep, preparing himself for tennis the following day. The holidays were fun, but our communication problems persisted. Occasionally I tried to resolve some issues but with no success. Gavin still stubbornly refused to discuss problems. I begged him to listen to me and try to understand why I felt so sad and lonely. All he said was, ‘You always want to talk. Now that we’re having fun, don’t ruin it with your silly conversations.’ I cried and he got angry. It was devastating – even here in this beautiful resort we seemed to argue all the time. The holiday in Malaysia didn’t improve our relationship. There was still no mutual understanding between us. Personal issues remained unresolved and our resentment towards each other grew. Gavin was frustrated with me for making him feel inadequate. He thought he was giving me a good life. I myself felt bitter because there was no closeness. Instead we drifted further and further apart. Today I can see that this was neither Gavin’s nor my fault. Being close to somebody means that we have to know how this person feels and thinks. This of course wasn’t possible in our relationship. Due to AS Gavin had no idea how I felt and even less how he felt. We couldn’t talk about emotional issues and this put a certain distance between us. Our relationship always stayed on a superficial level and resembled the one that people have with fellow sports club members. They share the same hobby, love similar food and let us know which car they drive, but that’s all. This might be okay for a sports club, but a marriage needs more than that. To reach some form of closeness it is essential to be able to communicate effectively and we couldn’t do that. There were reasons for this. One of them was the fact that Gavin was constantly stressed. He used all his energy to stay calm and keep his anxiety at bay. Whenever he felt relaxed I forced him to talk. Conversations increased his stress levels substantially, especially when they were loaded with emotions that he didn’t understand. The more I pushed him to listen

Arguments Need to be Resolved

63

the more he tried to avoid it. If I kept on persisting the stress became overwhelming and made him explode. I was not aware of this, his stress wasn’t visible and there was no apparent reason for it. Nevertheless it was there. We all understand that others are stressed when they are running late to catch the train or if they have to complete a job in a certain time frame. We wouldn’t dare try to have a deep and meaningful chat with somebody who is obviously in a rush. They’d probably tell us to get lost and might even get angry if we persist. Gavin felt this sort of stress every day. He avoided conversations about certain issues because they increased his stress and he didn’t want to risk a meltdown. He didn’t like to resolve issues through conversation because it never really worked for him. On the contrary, usually his blunt comments made matters worse. He was no expert in emotional discussions and thought it was best not to take part in them. After all, Gavin wasn’t really hearing what others were saying with words and body language and he also wasn’t getting out very clearly what he wanted to say. Recently he told me another reason for not wanting to communicate. He said that he always has hundreds of thoughts in his head and worries about forgetting them. In his words, ‘If I’m forced into a conversation while I’m trying to remember a thought, I get angry. While I’m thinking I’m not listening to what other people are saying. Subconsciously I block it out, otherwise it all becomes too much. I need to decide when I’m ready to talk.’ Today our family knows not to interrupt Gavin when he is ‘thinking’. It could happen in the middle of a game of cricket or while we’re watching a DVD, in which case he would stop for a moment to sort out his thoughts. He usually explains it by saying, ‘Just wait a minute, I am thinking about something.’ Years ago he didn’t tell us that he needed time to think, he just threw a tantrum in order to be left alone. I am sure that he was disappointed that our marriage had become a battlefield. When we met, I had loved him, now I had turned against him, like so many people before. It was sad really. Not knowing about AS made it difficult for us to find happiness as a couple. Luckily we didn’t give up. When we came back from Malaysia I found out that I was six weeks pregnant. Fate had intervened and in January 1993 I gave birth to our daughter Nadia. The name is Russian and means ‘hope’. Hope is what we desperately needed.

12. A Family Requires Teamwork Things didn’t improve with the birth of Nadia. While most husbands can’t wait to bring mother and baby home from hospital, Gavin didn’t seem to be in any hurry. He was supposed to pick me up at 12 but didn’t arrive until two thirty. I sat on my bed for two and a half hours and wondered where he was. Finally he walked in telling me that he couldn’t have come any earlier because he was watching the cricket on TV. I was very disappointed. Nothing ever seemed to change. Gavin continued working long hours while I struggled at home with two little children. Like Marc, Nadia developed reflux and ended up crying a lot. Gavin saw no need to help. In his opinion our jobs were equally shared. He earned the money and I did everything else. He was no team player, the thought of helping out never occurred to him. As the kids grew older and learnt to speak things became easier. Gavin loved Marc and Nadia very much and they enjoyed playing with their father. He was funny and made them laugh. The only thing he found hard to accept was that, unlike toys, children don’t just go back on the shelf when the game is over. They have minds of their own and things don’t always go according to plan. One night, for example, we had roast lamb for dinner. It was Gavin’s favourite meal at the time and he couldn’t wait to dig in. As we were about to start, toddler Nadia decided to go to the toilet. She washed her hands and then we heard a crash. I rushed to the bathroom and saw her lying in a pool of blood. She had fallen off the little stool and cut her toe. The tears were flowing and she needed me to be with her. I called Gavin to bring me the medical kit and he yelled back:

64

A Family Requires Teamwork

65

I’m trying to enjoy my roast lamb! When I was a kid roast lamb dinners were special! If Nadia wants to fall off the stool in the middle of dinner it’s her problem. You were silly to let her go to the toilet in the first place! Now deal with it. I won’t let anybody ruin my dinner!

This selfish remark shocked me. Back then I couldn’t understand why Gavin never seemed to care about anybody else. Today I know that his lack of empathy had nothing to do with ignorance. The incident with Nadia simply proved once more that Gavin wasn’t able to see things from anybody else’s perspective. He needed events to turn out according to plan, otherwise they added to his constant stress. This was meant to be ‘roast lamb night’ and changes were not accepted. I wasn’t the most understanding wife in those days. I’m sure Gavin felt my disapproval everyday. I couldn’t hide my continuous disappointment about his behaviour and walked around with ‘poor Katrin’ written all over my face. This, of course, didn’t help, it only aggravated our problems. Gavin felt confused and stressed. He needed me to be warm and loving, like when we first met, but he never said anything. Instead he hid his emotions behind a wall of arrogance and aggression and came across as if he simply didn’t care. Sometimes I call AS ‘Beauty and the Beast Syndrome’. The prince isn’t always visible behind the mask, but if he feels understood and accepted he might one day reveal himself. In 1993 Gavin gave up his job as a financial controller and decided to study from home. For a long time his work had been his special interest. Now he needed a new one. Lo and behold, he made a friend. The only problem was, she was a woman.

13. The ‘Girlfriend’ While he studied Gavin started a fruit and vegetable delivery service from home. After a few weeks he became friends with Anna (this is not her real name of course). She was one of his customers and he liked her because she seemed gentle and nice. When he introduced me to her we hit it off straight away. I also enjoyed her company and the three of us often took the kids to the park or went out for dinner. Everything was fine until Anna became Gavin’s special interest and he couldn’t stop talking about her. I tried to be tolerant but after a while his intense admiration for her started to annoy me. It wasn’t fair. I’d always thought that he was too self-involved to care about anybody else. Now he’d proved me wrong. He obviously could make an effort, just not with me. Anna’s name appeared in every conversation. It seemed as if she had become the centre of Gavin’s life. I started to get suspicious and came to the conclusion that he must be in love with her. He denied it and said that their friendship was totally innocent, but I wasn’t convinced. If somebody talks constantly about a person from the opposite sex it usually implies that a crush is present. One day Gavin said to me, ‘Guess what, Anna and I kissed.’ I almost fell off my chair. ‘Don’t worry, it wasn’t that great, not like with you, but it was fun to once kiss somebody else.’ I was shocked about his honesty. If I’d kissed somebody I wouldn’t have brought it up! Gavin, on the other hand, enjoyed telling me about his experience. He had no idea why I was upset. Kissing Anna was just something he did, like playing a different partner in tennis or trying out a new golf club. It didn’t mean that he loved her. It was just a bit of fun, nothing serious. I tried to tell him how I felt about it, but he didn’t understand my concern. If I’d kissed somebody else he would’ve been proud. He’d have 66

The ‘Girlfriend’

67

taken it as a compliment. ‘You should be happy that I’m your husband and not Anna’s,’ he said. ‘It means that you are the winner in the contest.’ I was stunned and couldn’t understand his logic. He seemed totally detached from emotional aspects, to him it was all a game. He wanted me to play too and was surprised that I wasn’t interested in kissing other men. It isn’t that simple in the neurotypical world. Kissing somebody else while married can lead to great confusion. It makes people fall in love, jeopardizes marriages, causes break ups and in the end destroys families. Gavin never considered the consequences before he did anything. He just did what took his fancy regardless of the feelings of others. Kissing Anna seemed interesting enough so why not give it a try? While his behaviour might seem heartless it simply showed that he had no theory of mind. In other words he wasn’t aware what others were feeling or thinking. He could only judge a situation from his own perspective. It wouldn’t have bothered him if I’d kissed another person, so why did it bother me? He didn’t have to tell me all about it, but he did. Not out of spite, simply because he wasn’t aware that it would hurt me. I had no idea how Gavin’s mind worked and was convinced that something went on between Anna and him. I asked her one day and she answered with a soft smile, ‘It’s nothing sexual, we are just soul mates.’ That was very painful. For so many years I was desperate to be Gavin’s soul mate, instead I was his cook and tennis partner. Now this woman just walked into our lives and claimed to have what I had wanted for so long. I was stunned to see that Gavin did all the things for Anna that he had never done for me. He took her kids to the doctor, listened to her problems and helped her whereever he could. Anna was married but always complained about her husband. She made it very clear that she’d rather be with Gavin. I wasn’t surprised, he was lovely to her. After all, she was his special interest and he was performing at his best. It wouldn’t have been so bad if only she hadn’t enjoyed his attention so much. Whenever we saw each other she gave me that look of, ‘I’m so sorry that Gavin likes me more then you’. I hated it and was unbelievably jealous. One night she rang and told Gavin that she was thinking of leaving her husband. Apparently she was on her way to the city and wanted to dance all night to forget her problems. She said that she was depressed about her marriage and was on the verge of running away. How dramatic! ‘I’m worried

68

Alone Together

about her,’ said Gavin, ‘I have to go and stop her.’ He was so naïve. I could clearly see the game she played with him. It was called, ‘I’m sad, come and rescue me.’ I tried to convince him to stay at home but with no success. Instead he went to look for her in the middle of the night, while his favourite TV show was on. I waited in bed for hours and tried to ring him on his mobile phone, but it was switched off. I couldn’t understand why he cared so much about her, when he never seemed to care about us. Finally he came home and was surprised to find me shaking and in tears. My reaction infuriated him. He was tired from driving around all night and wasn’t in the mood to dry my tears. Instead he got angry and went to sleep. I felt unbelievably sad. Anna’s problems might have been solved but mine were still there. Now I can see why he preferred to help Anna rather than me. First, her worries didn’t involve him. Second, he loved to be the knight in shining armour while her husband was the bad guy. And, last but not least, it was easier for him to give out advice rather than deal with his own issues. It gave him the feeling that he was an expert on relationships. Due to all these aspects he found spending time with Anna more rewarding. As time went on their friendship became more and more intense. They saw each other almost every day and Gavin was always full of praise for Anna. By now I was convinced that he loved her. When I questioned him about it he said, ‘Of course I love her, she’s very sweet.’ I was shocked, finally the truth was out. ‘Do you love her more then me?’ I asked. ‘No,’ he answered. ‘I love you both the same. I wish we could all live together in the same house.’ Once more I was shocked by Gavin’s blunt honesty. I thought that he deliberately wanted to hurt me, instead he was simply telling me the truth. He loved Anna. She was his special interest and that’s why she was permanently in his thoughts. For him it didn’t change anything between us, I was still his wife and the mother of his children. At this stage I wasn’t aware that Gavin had AS and due to that had a different outlook on life. For him telling the truth was more important than the feelings of others. The fact that I looked hurt after he’d answered my question confused him. Why ask, if I didn’t want to hear what he had to say? It didn’t make any sense. Gavin wasn’t aware that in the neurotypical world life is much more complicated. People usually weigh up carefully how much truth is acceptable in order to stop others from getting hurt. If neurotypicals

The ‘Girlfriend’

69

fall in love they generally don’t report it to their partner, they keep it to themselves. People with AS, on the other hand, seem to speak their thoughts. I was convinced that Gavin wanted to purposely hurt me with his comments. Instead he was simply trying to share his special interest with me. In hindsight I feel bad that I was so negative about his friendship. After all it was the first time that he had found a like-minded person. Gavin and Anna both collected toys and she was a big admirer of his Star Wars collection. They enjoyed venturing to antique shops in order to track down special edition figures. Together they were able to escape the real world and live in a fantasy land. It made Gavin happy and helped him relax. There was nothing more to it on his behalf, but I couldn’t see that. After a while Anna was ready to take the relationship further but Gavin had no intention of cheating on me. She didn’t like that and became more and more resentful. One day when he rang, her daughter answered the phone and said that her mum thought that he was obsessive compulsive, because he came over so often. Gavin was hurt. Anna had betrayed him with her judgement and he was going to tell her what he thought of her. Obviously it wasn’t a diplomatic phone call as we never heard from her again. After that Gavin never took a serious interest in another woman, he had learned his lesson. ‘It’s hard to keep one woman happy. Two is impossible!’

14. Dealing with Sickness: Associative Thinking Causes Stress After the friendship with Anna our family had a relatively problem-free time. Marc and Nadia were growing up and had settled well into school. They took up swimming and were both good at it. While Nadia had many different hobbies, Marc put all his effort into this new sport. He was keen to do well and practised his strokes with great discipline. At the end of the season he was rewarded with a medal for the most improved and most dedicated swimmer in the club. Gavin loved his son’s success and decided to make it his new special interest. Together they discussed different styles and techniques and were both hoping that the effort would pay off. Unfortunately things didn’t go as planned. Marc had to change clubs over winter and the training under the new coach was much more intense. The swimmers were encouraged to perform at their best for the duration of the two-hour sessions seven times a week. Once Marc came home from school with a sore throat and I thought it would be better if he didn’t swim that day. Gavin didn’t share my opinion; unlike me he never listened to his body, or couldn’t hear what it was telling him. He wanted his son to be tough, and train even though he wasn’t feeling well. When Marc refused Gavin told him he was weak and convinced him to go after all. I tried to interfere but with no success. After that Marc became very ill and was diagnosed with a streptococcal infection. The doctor ordered strict bed rest and a big dose of antibiotics. He said that if untreated the condition could progress to rheumatic fever. Marc wasn’t happy. No swimming, no sport, no fun. The antibiotics had started to affect his appetite and he couldn’t even enjoy food anymore. He

70

Dealing with Sickness

71

was sad and Gavin was angry. Why on earth did Marc have to get sick now? It wasn’t planned. He enjoyed seeing his son swim and wanted it to continue. It’d been his special interest for a while. He couldn’t afford to lose it so suddenly. Today I know that Gavin has no theory of mind. He wasn’t able to look at the situation from Marc’s point of view. He never realized that his son’s dreams were shattered and that he was trying hard to fight off this nasty illness. All he could see was how it affected him. He didn’t particularly like sick people hanging around, not for more than a few days. To him being sick was a sign of weakness and imperfection. He was never sick, so why should others lie around and get looked after. Things got worse, after the course of antibiotics Marc wasn’t better. He had lost a lot of weight and still couldn’t eat properly. His strength had vanished and the doctors discovered that he also had glandular fever. For weeks his condition showed no sign of improvement. He had become nothing more than a shadow of himself. His symptoms resembled those of chronic fatigue. It broke my heart to see him so unwell. From time to time he turned to me and said, ‘Mum can’t you do something? I really hate feeling so sick and exhausted all the time.’ I have never felt so helpless in all my life. Marc and I saw many specialists but none had an answer. For a while they were worried that he had a brain tumour because they saw a shadow in his eyes. He had computerized axial tomography (CAT) scans and stomach examinations but nothing showed up. I was barely coping with the stress. By now Marc had missed six months of school and there was no sign of improvement in sight. Gavin and I handled the situation very differently. While I tried with compassion and affection, he tried out some strategies that he thought would work. One day I walked into the room and heard him say, ‘I’ll give you a thousand dollars if you get better.’ Marc answered, ‘Well, Dad, I’d love a thousand dollars, but unfortunately I can’t just get better.’ Gavin tried again, ‘What if I give you two thousand dollars?’ Marc and I were stunned, obviously Dad thought that one could get better with the right amount of money on offer. I remember laughing at his attempt, which in a way was unfair; after all Gavin was just trying to help. He thought there must be a logical way to fix this problem. So far money had always done the trick for him. Why wasn’t it working this time? Another day I came home and found

72

Alone Together

Marc totally beside himself. ‘Dad is dying of cancer,’ he screamed. ‘I’m not allowed to tell you, I’m the only one that’s supposed to know.’ I calmed Marc down and asked Gavin why he had said that. He seemed surprised that his attempt to improve the situation hadn’t worked. ‘Of course I’m not sick. I simply hoped Marc would forget his own illness if he had to worry about someone else,’ he said. Gavin has never been sick for more then a few days; he had no idea how Marc felt. All he had in mind was fixing the problem. He wanted everything to be fine again, back to the normal routine, where everything was predictable. The uncertainty connected with Marc’s illness must have driven him mad. He liked things to be perfect, but they weren’t – our son was sick. Nobody knew what was really wrong with him and there didn’t seem to be a cure. We just had to accept it and try to give Marc as much support as possible. While my stress levels were rising Gavin’s had peaked. He felt out of control, anxious, unsettled, worried, annoyed and helpless, but he couldn’t express it. Instead he got angry: angry with Marc for being sick and angry with me because I couldn’t make him better. He wanted everything to be fine again, but no matter what he did and how angry he was, things remained unchanged. I had no energy for his outbursts. My only concern was to help Marc. I needed Gavin’s support and he needed mine, but because we couldn’t communicate we weren’t able to help each other. At this time Gavin had become a partner in a shop fitting business and managed all their operations from home. He had set his office up in our double garage, where he and his private secretary worked from nine till five. Today I’m aware that this situation was far from perfect. Gavin needed a totally different work environment. His mind was constantly racing and he had great difficulty in concentrating. I only understand this since he explained his way of thinking: I store my experiences, my visual impressions and things that I learn like a computer. I’m able to open a file and replay events at will in my head. This can be very useful in analysing my actions and trying to make corrections. Unfortunately I have great difficulty in stopping and focusing on one thing, instead one thought triggers another and another. The visual show moves at such a pace that I have trouble remembering where it all started. It feels like I’m in a daydream. This

Dealing with Sickness

73

frustrates me enormously and leaves me desperate to get back to my initial thought. If, for example, I’m considering restringing the tennis racket, my mind will move on to playing a video of Roger Federer, the Swiss tennis champion, that again triggers a memory about the beautiful nature of Switzerland, the next picture might be of our family eating a Swiss fondue in the snow, from there my mind will move on to skiing, then our daughter’s ski accident and from there to Swiss hospitals…then I might think of health insurance, then house insurance, then pool maintenance… As you can see getting back from pool maintenance to restringing my tennis racquet is no simple task as there’s no direct relationship between them. The continuous associations tire me terribly, but I’m able to stop them if the stress becomes too much. Of course this isn’t as easy as it sounds. If I want to put a halt to the visual show I have to block out all potential thoughts and make my mind blank. This is not an ideal situation as being thought-free makes me forget even the smallest of tasks that I’m supposed to perform. When this happens I start to panic and feel as if I’m losing control of my life. A lot of my daily stress comes from the fact that my head is either full of thought associations or totally blank.

Gavin’s mum once told me that he refused to have pictures on his bedroom walls while he was living at home. If she put some up, he turned them over. Clutter triggers thoughts for Gavin. The double garage, his home office, was full of it. To get a bit of fresh air he left the door open to the backyard. I often passed by with my washing or some gardening tools, telling him some of the most recent news. Other times people dropped in for a friendly chat and because Gavin’s office door was open they exchanged a few words with him. As if all that wasn’t enough there was also his secretary, who was keen for some social interaction. Last but not least were the visits of his partners, who came to discuss business matters, but usually stayed longer than expected. All those conversations triggered endless thought associations for Gavin, but he wasn’t able to express how it affected him. He tried to perform as expected, but deep inside he struggled with those unsettling work conditions. Sitting all day in a double garage full of clutter, with phones ringing, people dropping in and no physical exercise, was more then he could tolerate. On the outside he seemed relaxed, but inside the stress was building. He was like a volcano ready to erupt. If I am stressed it’s easy to recognize, I

74

Alone Together

rush around, flap my arms, look flustered and busy. Gavin, on the other hand, shows no signs of stress at all, he seems totally quiet until he explodes. I had no idea that he was struggling to keep his associative thinking under control, he never spoke about it. Occasionally he made comments such as ‘I constantly have so many thoughts in my head,’ or ‘Today I was thinking so much that my brain shivered.’ I couldn’t understand what he meant by that and assumed that he was simply looking for attention. It took a while before I realized that something wasn’t quite right. Gavin seemed more and more distracted and occasionally had what he called a dizzy spell. In that situation he had to lie down straight away and I wasn’t allowed to touch him or say anything. He had to close his eyes and take a few deep breaths until it was over. Even though he was very pale during the event, he usually recovered after about ten minutes. I was concerned, it all seemed very strange. Marc’s illness on top of all this was simply too much for Gavin to cope with. He used to come inside from time to time, sneak into the TV room and have some time alone. The fact that Marc was now sometimes in there, resting and watching a movie, left him without a place in which he could settle his thoughts. This increased his stress considerably and after months of worrying there was still no improvement in sight. Instead of getting better, Marc started to show signs of depression, due to the fact that he was too weak to play sport, too tired to concentrate at school, too worn out to talk to his friends and too sick to enjoy food. Gavin didn’t know how to deal with this and showed his frustration by making tactless comments. It seemed as if he didn’t love his son anymore. I permanently had to reassure Marc that this wasn’t true, even though I had a feeling that it was. Now I can see that Gavin must have been in a state of total fear and confusion. So far he had been able to control things, influence them to his advantage, but this time it was out of his league. No matter how many tantrums he put on, or how angry he became, things didn’t turn out the way he wanted them to. He’d always been convinced that he could change events if only he had sufficient money and was forceful enough. Now he was proved wrong and this made him anxious. He wanted to be seen as a perfect father who had smart, sporty and healthy children. Sickness meant imperfection, weakness and failure, things that he despised in himself and others.

Dealing with Sickness

75

Our family life had turned into a disaster. I had to deal with Marc who was sick, Gavin who was angry and nine-year-old Nadia who was desperately craving attention and reassurance in this difficult time of life. There was no balance anymore, everything was up to me. I had to stay positive and strong, but I had no one to help me cope. In time friends turned away from us. Most people would rather socialize with families that are in tune and we certainly didn’t fit into that category. We were a total mess. I took Marc to a doctor who tried to counsel him, but he didn’t seem to achieve anything. He suggested family therapy but Gavin had no intention of spending money on that. He hated talking about problems so why on earth would he pay somebody for a conversation involving personal issues. Finally I received a phone number from a counselling service that bulk bills. I rang them, but they said that they needed a doctor’s referral. Our doctor refused to write one out, he preferred to deal with Marc himself. His sessions were not cheap and Gavin wasn’t prepared to keep paying if he couldn’t see an improvement. I tried to explain this to the counselling service and asked them to reconsider, but they didn’t care. Nobody wanted to help. I was totally and utterly alone. I tried to keep a brave face and stay positive but the stress was unbelievable. One day I felt so bad that I rang Marc’s doctor and said that I urgently needed to see him because I was about to have a nervous breakdown. The receptionist offered me an appointment for Friday – five days later! I felt like crying, screaming, giving up, but of course I couldn’t. I had to be strong for my children. About a week later the doctor informed me that there was a strong possibility that Marc would never get better. He said that he had never seen a 12-year-old boy with such strong symptoms of chronic fatigue. I felt like I was dying. Sometimes I just sat on the sofa thinking of all the fun times that I’d experienced with Marc when he was little. We used to dress up, build Lego castles, play hide and seek and make figures out of plasticine. Now he had barely enough energy to sit up and watch a movie. He was so pale and thin, it broke my heart just to look at him. I have never felt so totally helpless and sad as I did then. Poor Nadia was totally confused. All the attention was on Marc. She felt that nobody cared about her. I tried my hardest to make her feel special and happy, but she could see how tired and worried I was. I still taught aqua aerobics in the leisure centre. Two years before, I had completed a course as a fitness leader and aqua instructor. Now I had a good

76

Alone Together

job, but again I was required to be bubbly and happy and lift people up all the time. My strength was fading and I had almost lost hope that Marc would recover. As a last resort I approached a naturopath. She suggested we do a ‘hemaview’. That meant to extract one drop of blood from him and then view it under the microscope for the next 24 hours. The results of the test showed that he was suffering from a condition called ‘leaky gut syndrome’. It can be triggered by various factors. One is antibiotics because they can lead to the overgrowth of abnormal flora in the gastrointestinal tract. Leaky gut syndrome is associated with many health conditions, one of them being chronic fatigue. So, after months of wondering what was wrong with our son, we had an answer. Contrary to all the comments from other people it was clear that he really was unwell. He wasn’t faking it, he wasn’t just depressed or rebelling against his family, he was full of toxins. His gut walls had become leaky, letting bacteria, fungi and parasites enter the bloodstream. The microbes and their toxins had overwhelmed his liver’s ability to detoxify. At the same time the inflammation of the gut had led to a long list of mineral deficiencies. It was nice to know the cause; now we had to look for a cure. The naturopath suggested a stress-free environment, nutritional support and bodywork. Considering this we decided to go on a holiday to Switzerland. The kindness of my family and friends, the wholesome food and skiing in the fresh mountain air helped Marc get better. When we returned he was still pretty thin, but his energy levels had improved considerably and he seemed much stronger. At that time I sometimes visited a spiritual counsellor. Unlike other people she had time for me and her prices were affordable. She always said that things happen for a reason and that we were meant to learn from certain situations in order to evolve into more developed human beings. Marc’s illness taught us a lot. Gavin, who for years was convinced that he was in control of everything, realized that there was a force much stronger than him. He became aware that money doesn’t always do the trick and that as a father he needed to be more then just a breadwinner. He decided that it was time to quit his job and become a family man and investor. Due to his ability in business he had enough money to do so.

Dealing with Sickness

77

I, on the other hand, had learned to ignore Gavin’s inappropriate behaviour and deal with situations on my own. In doing so I realized that I was stronger than I thought I was. The knowledge that I had been able to live through the time of Marc’s illness with no support from anybody made me feel more confident and secure within myself. Marc is now 16 and very healthy. He has been champion in his age group for his school for two consecutive years in both swimming and athletics. He has won various academic awards, has lovely friends and is a very easy teenager who gives us hardly any problems. He eats, swims, plays tennis and runs, but most of all he is happy and well adjusted. Gavin never intended to cause harm with his seemingly uncaring behaviour. The lack of theory of mind, the fear of failure, the associative thinking at work and the unpredictability of the situation had increased his stress levels immensely. Due to the fact that Marc couldn’t swim anymore Gavin had also lost his special interest, which meant he wasn’t able to keep his anxiety under control. Having AS made him unaware of his feelings and stopped him from expressing his confusion. The only way he was able to deal with Marc’s illness was by ignoring it or by relieving his stress through anger. Neither of those coping techniques was helpful to us. Today Marc and his father are best friends. Gavin does whatever he can to show his son how much he loves him and they have a lot of fun together.

15. The Car Accident: Dizzy Spells can be Fatal! Gavin enjoyed his new job as family man and investor, it gave him time to relax and play golf. I was still a bit worried about Marc even though his health was improving and he was able to go back to school. The stress of the last year had drained me. Having Gavin home could have been a great help, but it proved to be rather exhausting. He talked non-stop about golf, explained every shot in detail and didn’t give up until I knew it all. If I tried to talk about my things, he showed no interest. He washed the dishes at night and I did everything else. When he wasn’t at golf he sat at the computer looking at the share prices or watched TV. He wanted me to join him but I didn’t feel like wasting my day in front of the ‘box’. If I had spare time I swam or walked through the forest and enjoyed nature. We didn’t argue much, both of us were grateful that Marc’s health seemed to be back on track. In the school holidays we drove to Melbourne and visited Gavin’s sister. It turned out to be a great holiday. We enjoyed the wonderful city and caught up with family and friends. After two weeks of excitement it was time to leave. Gavin insisted on driving the whole way, partly to spare me from the task and partly because he wasn’t keen to test my long-distance driving skills. Sitting in a car with three other people who talk, laugh, sing, play quiz games, tell jokes, complain and argue is hard for a neurotypical. For a person with AS it’s almost unbearable. Squashed together for more than 20 hours with no place to escape was dangerously stressful for Gavin. His associative thinking was tested in many ways. One minute I was talking about my aqua classes, the next minute Marc was informing us all of Ian

78

The Car Accident

79

Thorpe’s 200m freestyle record, then Nadia was engaging us in a conversation about her next acting workshop. All this initiated three thoughts in my head. Gavin’s associative thinking left him with about 15 and that was only if he was able to stop the thinking pattern before it got out of hand. This, mixed together with a lack of sleep and too many sweets, brought on an unbelievable overload. Already stressed and exhausted from seeing so many relatives and friends, Gavin was heading for a meltdown, but none of us knew what a dangerous potion was brewing in the front seat. He kept on eating sweets even though he knew they caused him to be hyperactive, and refused to drink because he was in one of his survival modes and was sure that he didn’t need to be rehydrated. I didn’t feel like arguing about it. Maybe he was superhuman like he always said he was! On the morning of the second day Gavin started to show signs of stress. Marc had accidentally left his Warhammer magazine in the motel room. Forgetting something somewhere was a habit that annoyed Gavin enormously. He just couldn’t get over it. The previous day he had lost his mobile phone. Knowing that two items were missing was enough to agitate him substantially. On top of that everybody was complaining about the long trip. The kids were talking about upcoming school events while I voiced a list of chores that had to be done at home. Gavin finally had enough. ‘Why don’t you guys just shut up,’ he yelled. We knew he meant it and for a while everybody was quiet, and listened to the Kenny Rogers song ‘Lucille’. Meanwhile it had started to rain. I was looking out of the window, thinking about home, when the car suddenly crossed to the other side of the road. Gavin loved playing pranks but that didn’t seem funny to me. ‘What are you doing?’ I screamed, and turned to look at him, only to see that he was unconscious with his head rolled back, his mouth was wide open and his eyes closed! My instant thought was that he’d had a heart attack. I had no time to grab the steering wheel, everything went so fast. Petrified I watched how the car sped off the road, over a two-metre ditch, through bushes and trees and then finally stopped. It was filling up with smoke as I crawled out in an attempt to rescue the others. Just as I was about to pull Gavin through the door he opened his eyes and walked out. Grateful that he was alive I sat down and tried to reassure the children. Both of them had bitten their tongues and had a few cuts and bruises, but otherwise they seemed fine. I

80

Alone Together

myself was in agonizing pain. I was worried that I had internal injuries because I could barely breath. After a while the ambulance arrived and took us all to hospital, where I was told that I had a fractured sternum. Gavin felt sick and had a headache, but the doctor who examined him couldn’t find any real cause for it. In the end he put it down to dehydration, but let’s be honest, if that led to loss of consciousness half of Australia would faint in the car on a hot day. I am convinced that Gavin experienced an overload. He told me later that he had felt a dizzy spell coming on before the accident, but couldn’t stop as there was a ditch running down the side of the road. Never before having blacked out he kept on driving thinking that it would pass. The police couldn’t believe that we were alive. Our car was a total write-off but apparently we had been saved by the rain. The soft earth had absorbed the impact, while dry ground would have caused the vehicle to somersault. We must have had a guardian angel on that rainy day in Armidale. After leaving the hospital we stayed in a motel for three days and then drove home in a hire car. I was still in lots of pain and showed signs of post-traumatic stress syndrome, but other than that we were all cheerful and happy to be alive. Gavin felt bad about what had happened. He had always thought that he was invincible, faultless and, in his own words, ‘superhuman’. Now he wasn’t so sure about that. Once more he had to learn that certain events are beyond our control and might even happen for a reason. It was as if destiny wanted us to become aware of AS, by giving us difficult situations to deal with. It’s only when things get out of hand that we have to take a closer look at ourselves. Over the years it has become clear to me that Gavin has an overactive brain. He can think with an intensity that is beyond my comprehension. After the accident I made him go and see a neurologist who stated that the blackout had probably been a seizure, caused by temporal lobe epilepsy. Apparently the electroencephalogram (EEG) showed abnormal electrical impulses and the magnetic resonance imaging (MRI) that there was scarring on the brain. He prescribed medication but improvement of the dizzy spells only happened after Gavin started to make a conscious effort to be more relaxed.

The Car Accident

81

Today we are aware of Gavin’s stress levels and are careful to keep him as relaxed as possible while he drives. We often listen to music (but not ‘Lucille’!) and when we talk we try not to mention 20 different things at once. I try to be organized in order to avoid a rush before we leave. If Gavin is stressed before the trip he finds it hard to wind down in the car. We also don’t drive for more than three hours at a time. If a greater distance has to be covered we generally take a plane. Gavin has learned to be more aware of his stress levels and lets us know if we become too noisy. He is a very good driver and if we take the above precautions he has no problems. AS can show itself in many different ways. This was a dangerous encounter that could have had a fatal ending, but it led us closer to a diagnosis. Something was obviously not quite right with Gavin’s way of thinking. He seemed to experience stress levels that were outside the normal range.

16. Being There in Body but Not in Soul: Alone Together After the accident things went more or less back to normal. My broken sternum wasn’t as painful anymore, but I was still suffering from what’s called post-traumatic stress syndrome. It showed itself in panic attacks and dizziness. To help me recover my doctor gave me a book with funny illustrations in which anxiety appeared as a hairy monster. Gavin and I read the book together and he said, ‘I feel like I’m living with that creature everyday.’ After I made sure that he wasn’t referring to me, we had quite an interesting conversation. For the first time he was able to talk about how he felt, with the help of the words and illustrations in that book. I was surprised to learn that he suffered from anxiety; he’d always seemed so self-assured. While my anxiety was temporary and only caused by the trauma of the car accident, his appeared to always be there. This explained his frustration. As Yoda says in the Star Wars movies, ‘Fear leads to anger, anger leads to hate and hate leads to suffering.’ Gavin’s explanation about his constant anxiety made me wonder if there was an underlying problem with his nervous system. Something just didn’t seem right. I was desperate to find an answer for his constant stress, anxiety, dizzy spells and inexplicable mood swings. This diary entry, written two months before the diagnosis, shows how I felt at the time: I’m really worried about Gavin. He spends half his life watching television, not talking just staring at the screen. Everything seems to annoy and irritate him. It is as if he is not there except for the occasional bout of anger. It’s hard to relax. I’m always waiting for the

82

Being There in Body but Not in Soul

83

next explosion. Lately he doesn’t seem interested in family life. He would rather watch the cricket for days on end. His urge to blank everything out scares me. It seems as if he makes a conscious effort to simply exist. Television is no substitute for life. I want to laugh, meet people, have fun, learn things and enjoy nature. His constant refusal to join me in new ventures batters my enthusiasm. It’s like trying to move a mountain. I am worried my energy won’t last and that one day I won’t be able to carry on and inspire myself and the children. Something is wrong, I can feel it.

In the diary I refer to another behaviour that concerned me, which was the fact that Gavin had a tendency to switch himself off from the outside world. He was physically present but mentally absent. In other words he was there in body but not in soul. Donna Williams describes this phenomena very accurately in her book Somebody Somewhere (1998). She calls it ‘Me and his body minus him’. It feels very strange to be physically close to somebody who isn’t really there. When Gavin used to switch himself off I could still see him but I couldn’t feel his presence. I knew that he was in the room but I felt as if I was alone. This was unbelievably frustrating. I couldn’t explain it. From the outside everything looked fine, but something about his calmness stressed me out. I found it highly irritating. It felt as if we were ‘alone together’. I had no idea that Gavin occasionally had to shut others out so he could recuperate. He is far more alert than the average person. He hears more, sees more and thinks more. Due to that he constantly feels bombarded with noises, visual impressions, smells and thought associations. It is as if he can’t filter what he takes in. At a shopping centre, for example, I can browse and enjoy myself, while Gavin is stressed by the bright lights, the noise, the people that brush past, the wide variety of items on sale and all the visual stimuli. He is like a rabbit caught in a spotlight. He becomes distracted and forgets why he came to the shops in the first place. Once this occurs his mind starts to wander and this triggers his associative thinking. He can quickly accumulate 20 or more thoughts and end up in a state of total confusion. It isn’t unusual for me to find him standing somewhere, staring into thin air, with a blank look on his face. It is difficult for Gavin to simply be in a place without absorbing every little detail. The other day we sat in a restaurant and he asked me what I saw right at that moment. ‘A few people walking past, lots of cars, your face, and

84

Alone Together

my drink,’ I replied. Gavin’s list was much longer. He saw number plates, restaurant signs, table numbers, dogs, marks on the table cloths, a man with a mole, a woman that seemed to grow facial hair, graffiti, etc. I could fill pages with what he saw. It’s obvious that he sees much more detail than I do. I could probably attempt to see more if I had to, but if I’m sitting with my husband in a restaurant I enjoy the moment and filter out the unimportant stuff. Gavin’s alertness is amazing but must be very tiring for him. To cope with this he has to occasionally switch himself off from external stimuli. I didn’t know that and neither did he, but it showed itself in his behaviour. Whenever he felt flooded with visual impressions, sounds and thoughts he went to the clutter-free TV room and watched the cricket. Sometimes he stayed there for days. If I asked him to go to the swimming pool with us he came along, but had the earphones plugged into his ears and listened to the cricket. He was there but he wasn’t. Today I can see that watching TV helped him to relax. Sport shows especially didn’t trigger many thoughts for him. Going to the swimming pool, on the other hand, meant being swamped with impressions. The earphones enabled him to occasionally lie in the grass and block out unwanted thoughts. I couldn’t see that, to me his behaviour meant that he wasn’t interested in spending time with the family. Today Gavin lets me know when he needs peace. This is very helpful as it gives me the opportunity to plan the day without him. I don’t always want to be calm, sometimes I prefer to be stimulated. If we spend time apart and enjoy it the way it suits us, we are far more likely to be happy together later. Luckily we have many common interests which enable us to have fun as a couple. Activities such as tennis, skiing, body surfing, golfing, etc. provide us both with enjoyment. While I love the outdoors, the social aspect and the exercise, Gavin likes the mental challenge and the fact that sport doesn’t trigger many thoughts for him. Until recently he didn’t like to go for walks with me. The visual impressions, together with my chit chat, were too difficult for him to handle. Today he often joins me when I go outside. He takes his MP3 player along and if he has enough of my talking he plugs the earphones in and switches off for a while. It must look funny; the way we walk along hand-in-hand, me listening to the birds, admiring the colourful trees, while he is enjoying his music. We don’t mind, at least that way we can be together.

Being There in Body but Not in Soul

85

It’s vitally important in an Asperger marriage to express how we feel. Being different means that we don’t always comprehend our partner’s intentions; we need to communicate and explain our needs in order to avoid misunderstandings. Two months after my diary entry we discovered that Gavin has AS. It made things easier, but the problems didn’t just disappear overnight. The next chapters show how we still sometimes struggle and what we do to avoid difficult situations.

17. The Energy Theory: My Way of Dealing with Tantrums Years ago I read a fantastic book called The Celestine Prophecy by James Redfield (1994). Among many philosophical issues it explores the human need for emotional energy, a source that is essential in order to find happiness in everyday life. Most of us are well aware of ways to gain physical energy through good nutrition and daily exercise. Keeping ourselves emotionally energized is a far more difficult task, especially in an Asperger marriage. I’m no expert on this matter so what I describe in the following paragraphs is simply my personal opinion based on the philosophical teachings of James Redfield. In a successful relationship both partners should be able to uplift, inspire and energize each other. In an Asperger marriage this energy exchange doesn’t seem to take place. Usually the ‘neurotypical’ hands out energy but receives none in return, and thus feels permanently exhausted. Due to the high stress and anxiety levels, the AS partner finds it difficult to sustain his energy and therefore has little left to share. Whatever exists he retains to satisfy any personal requirements. It’s a kind of self-preservation technique. In addition to this, communication problems aggravate the situation by creating an invisible barrier which prevents energy flow.

Energy sources in everyday life Not receiving energy from our partner is not the end of the world. On the contrary it forces us to look for alternate sources. Learning to energize ourselves without the help of others makes us independent and benefits the relationship.

86

The Energy Theory

87

Some activities that I find energizing include a walk in the forest, playing tennis in pretty surroundings, hanging out with friends, watering the garden, buying a present for someone, pottering around at home, etc. Gavin finds it difficult to energize himself with these activities. Walking in the forest bores him pretty fast, unless we are searching for a path, in which case he feels a challenge and becomes inspired. Playing tennis could be a winner, unless it’s a bad game, in which case it saps him of energy. Hanging out with friends is rather tiring unless they are prepared to play sport with him. If they do he enjoys their company because he isn’t stressed by social chit chat. What provides him with energy is not the socializing aspect but the quality of the game he plays. Watering the garden is definitely draining; it reminds him of all the chores he never does. He’d love to concrete the backyard so he’d never have to mow the lawn again. Buying a present is rather stressful as it requires decisions and feels like a waste of money. Pottering around at home is not something he enjoys either. It gives him too many thoughts, unless he watches TV. It seems everyday life doesn’t necessarily energize AS people. On the contrary it can have a draining effect.

Energizing people with Asperger’s Syndrome Mastering AS people’s special interest is often the best energy source. The success experienced while being on the computer, the tennis court or at university is vitally important and can’t be replaced. Gavin, for example, re-energizes best with a hit of tennis or a good game of golf. While an energizing experience can uplift neurotypicals for many hours, people with AS often lose the energy they have gained pretty fast, because of their high stress levels. Having no energy is devastating. In an attempt for a quick refill, we humans often turn to others and try to steal their energy by using one of four behaviours.

Anger Threatening people either verbally or physically helps us gain energy at the expense of others. At school this behaviour is quite common. Stressed students often use a tantrum to refill their energy tanks while bullies torment others to achieve the same result.

88

Alone Together

Distance By looking mysterious and distant we force others to guess what is bothering us. As long as they don’t know what we are feeling and thinking we can gain energy at their expense. This behaviour often occurs unintentionally in an Asperger marriage as partners have no theory of mind regarding each other. While the neurotypical tries to figure out what’s going on in the partner’s mind, the AS person struggles just as much due to his problems with reading body language and facial expressions. Having to take wild guesses about each other’s thoughts and feelings can be very draining. That’s why communication is so important. Once we are able to stop wondering about our partners intentions we’ll both have more energy for life.

Questioning Probing into other people’s lives attempting to find something wrong with what they are doing and then criticizing this behaviour is another effective way to steal energy. The person who is targeted with personal questions is often unaware of the intentions of the quizzer, but starts to feel self-conscious in his presence. While this behaviour seems to be nothing other than harmless chit chat, its condescending manner leaves the victim drained and the quizzer fully energized.

Self-pity If we make others feel responsible for all the bad things that are happening to us, then we use self-pity as a drainage tool. Blaming someone for our misery, implying that they aren’t there for us when we need them, is a great technique to gain energy at the expense of others. Even though self-pity is the most passive of the four behaviours it is by no means less effective. In an Asperger marriage it is quite common as we partners often feel alone in times of distress, and subsequently try to make our spouse feel guilty about the way he treats us. It’s understandable but nevertheless it’s an attempt to energize through somebody else.

Energy battles Unfortunately everybody fights for energy with the technique that suits them best. We can use anger, distance, questioning or self-pity, but once we

The Energy Theory

89

deplete others they generally retaliate and draw us into a power battle. These battles are the substance of almost every argument that takes place in the world. In Asperger marriages they can be constant, as the AS partners lose energy quickly and we partners are always depleted. For years I felt tired because Gavin was angry, sad, distant or critical. Most often he used anger to gain my energy while I used self-pity to get it back. The battle had started and was never ending. It’s important to realize that entering this power battle can destroy the marriage and has to be stopped as soon as possible. Of course this isn’t easy; our natural instinct wants us to retaliate and steal back the energy we have lost, but it doesn’t work. Instead of receiving a refill we lose more. The AS partner, after all, is an expert at stealing energy and has no intention of parting with it. I’m sure you can relate to the following situations. Have you ever been down, only to hear your partner say that he was even more depressed than you? Have you tried to match his anger and scream back at him, only to feel as if you have poured oil onto the fire? Have you tried to walk away and be aloof, only to see him more aloof and go to sleep without solving the problem? Last but not least, have you tried to criticize him? Well don’t! If I criticize Gavin he gives me a list of things that annoy him about me, or he gets so angry that I lose whatever energy I have left. Trying to steal the AS partner’s energy won’t work. Instead it’ll deplete us further. Aspies need to keep their energy for the daily battles in life, but we partners need to keep ours too. It isn’t possible to have a marriage free of energy battles, but if we can reduce the outbreaks the relationship will definitely improve.

How to avoid energy battles Find activities that are energizing These will vary from person to person, but can include activities such as swimming, walking, painting, reading, watching a good movie or spending time with encouraging and kind friends. It doesn’t matter what we do, as long as it makes us feel good.

90

Alone Together

Hold on to your energy Energy sappers are widely spread throughout society. We meet them at work, playgroup, the gym, the pub, basically everywhere. If we want to retain our energy we have to recognize ‘sappers’ and stay away from them as much as possible. Gaining energy through uplifting experiences is step number one; learning to hold onto it is step number two. If we lose what we have, we’ll be in danger of depleting others. A marriage is no different. If we realize that our partner tries to steal our energy we have to stop the process and resist the urge to retaliate. It’s best to leave the scene calmly and engage in an activity that we find energizing, giving our partner the opportunity to pursue his special interest for a while. This will help us both to recharge our batteries without having to sap each other.

Don’t deplete your partner It’s vitally important that we don’t just look at what our partner is doing to us, but what we’re doing to him. Believe it or not, we also sap when we’re down! Asperger behaviours aren’t easy to tolerate, but complaining about it doesn’t help. How often do we say: ‘You never help’, ‘Why don’t you talk to me?’ or ‘My girl friend was down so her husband took her out for a meal.’ Real meaning: ‘You never do that. You don’t even realize when I am down.’ All these comments are energy sappers. Being in an Asperger marriage gives us plenty of opportunities to use self-pity to deplete our partner. In fact there is a big chance that we’ll fall into this behaviour on a permanent basis because we are often out of energy. The risk might even increase after a diagnosis as we are obviously in a difficult situation and have reason to feel sorry for ourselves. It’s a certainty that the marriage will not improve if we keep complaining. Our partner will only be able to learn new behaviours if he has sufficient energy. Otherwise he’ll just become more difficult to live with.

Putting theory into practice It all sounds so easy on paper. In reality it’s very hard to avoid energy battles. Gavin and I recently had one that lasted for about two weeks and sapped us both immensely. It started with me feeling unwell. Usually I’m full of energy

The Energy Theory

91

and share it with my family. For once things were different, my stomach problem had weakened me and I had no energy to hand out. On the contrary I was desperate to receive some, as I wasn’t able to socialize or go for a walk. I would have loved Gavin to care about me but he seemed rather irritated by my state of health. Looking for a bit of sympathy I made comments such as: ‘These days I never feel well, whatever I eat makes me sick.’ ‘Well, join the club,’ said Gavin. ‘I never feel well either. In fact I’m sure my stomach is worse than yours. You’re just a hypochondriac, looking for pity. After all, I didn’t make millions to be married to a whinger!’ I was very sad and went to bed early, not holding out much hope for our exhausting marriage. It looked as if it was finally coming to an end. The next morning I suddenly remembered the energy theory. Reading the chapter in my book helped me realize what was happening. The fact that I was unwell stressed Gavin. It was a new situation, one that he didn’t have the answer for. He reached for his best coping mechanism, ‘ignorance’, but it didn’t work. No matter how ignorant he was my health didn’t improve. This stressed him immensely and his energy evaporated. He then used all four behaviours to energize himself, but I had nothing to give. No matter whether he was angry, detached, sick or curious about the amount of my last doctor’s bill, he wasn’t able to re-energize through me. Instead I indulged in self-pity and unintentionally sapped him further. He was desperate for energy. It had been raining for the last two weeks which meant he couldn’t play tennis or golf so there was no opportunity for him to refill through his special interests. I, on the other hand, was sapped by my poor state of health and his ignorance of how I felt. Like him, I could not fill up from my usual sources as I was too weak to go for a walk or a swim. We were both running on empty, desperate to sap each other. Once I realized what was happening, I knew that to save our marriage I had to energize Gavin. That morning when he walked into the kitchen I said, ‘You dressed nicely today, that shirt makes you look like a professional tennis player.’ He looked pleased but surprised; weren’t we supposed to be at war? The energy that the compliment and the remark about his special interest had given him evaporated very quickly once he realized that the knives in the drawer were not in the right place. ‘Who made this mess?’ he asked. This was a rhetorical question as I was in the process of putting the knives away. The quizzer was back! His comment annoyed me and I wanted

92

Alone Together

to say so, but instead I switched off, hummed a song in my head, thought about skiing in Switzerland and ignored the voice that was telling me how disorganized I was. Instead of a counter-attack I was able to agree with him and rearrange the knives. Over breakfast we talked about banalities. Then it was time to go to our voluntary job as librarians at ‘Asperger Services Australia’. ‘I’m not going,’ said Gavin. ‘Why should I do things for others all the time?’ ‘That’s fine,’ I answered, even though I needed his computer skills very much. ‘I’ll go alone.’ As I was driving off he ran out and screamed, ‘Stop! I’m coming with you.’ At the office that morning he patted me gently on the head. Later on he held my hand and asked me to talk about how I felt. The energy battle had been neutralized and our marriage was on the mend.

Summary Try to explain the energy theory to your AS partner, after all it’s a very logical concept and understanding it is the first step in avoiding energy battles. Everybody is energized by different things. AS people often respond best to compliments, appreciation of their work, conversations about their special interest and being encouraged to pursue their hobbies. We neurotypicals, on the other hand, love to receive quality time – meaning our partners take an interest in us and care about how we feel. If we can successfully sustain our individual energies there will be no need to enter the damaging cycle of energy battles. Structure your life so that you don’t need to steal energy or at least as little as possible. Don’t be disappointed if it doesn’t always work. It’s difficult to resist the urge to fill up through others! If you try to energize yourself and refrain from depleting others it will eventually become a habit and your relationship will bloom.

18. Bringing up Champions: How to Handle Criticism One of our biggest problems was the fact that we had a totally different approach on how to bring up the children. While I tried to raise well-balanced, happy, interesting and responsible individuals, Gavin tried to create champions. Initially I thought that he wanted Marc and Nadia to excel for his own benefit, but this wasn’t the case. Like me he longed to see them happy, and in his opinion this was only possible in the presence of success. While most people experience happiness in a variety of ways, Gavin only feels uplifted when he excels at what he is doing. This seems to be quite common for people with AS; the exceptional urge to succeed often leads to great performances. As a child Gavin didn’t like school and was regularly in trouble with teachers and other students. Suspension was hanging over his head on many occasions even though he was a clever student. What saved him in the end was the fact that he was a good football player. The school needed him in the team, and his peers accepted him because he was good at sport. The success he had on the footy field made up for the problems that he experienced in social situations. As a caring dad, he wanted to give his children the same opportunity. He thought that if they excelled at sport they would be happy and socially accepted. He spent hours teaching them discus, running, tennis, swimming, golf, football, soccer, etc. and they became very good at some of these sports. Gavin’s high expectations, however, gave them an enormous pressure to

93

94

Alone Together

perform. Like all children they wanted to please their dad. In Gavin’s case that wasn’t an easy task; he was a perfectionist who didn’t accept mistakes. His sports lessons were technically very good, but they lacked motivation, encouragement and reassurance. This problem showed itself very clearly when we played a game of family tennis. Gavin’s need for perfection, his extreme attention to detail, his need to correct error and the fact that his thoughts weren’t disengaged from his mouth made these events very stressful. While we were looking for a fun family outing he was there to teach us. The thought that we could have some quality time as a family never entered his mind. Why come unless we were willing to play properly. He wanted us to improve and put into practice what we had learned. As soon as we stepped onto the court he started to analyse everybody’s performance. Forget the birds, the trees and the family fun. Shots that weren’t technically correct annoyed him and he made sure that we all knew about it. There was no laughter, no relaxation and no fun, it was all serious business and far from enjoyable. Our tennis games sounded like boot camps, with Gavin shouting orders to all the players in a commanding voice: ‘Bend your knees; hit through the shot; watch the ball; keep your wrist firm; turn sideways; prepare early; stand further back.’ The fact that the kids still made mistakes, even though he’d showed them how to play, frustrated him immensely. Why didn’t they just follow his instructions? Obviously they had neither pride nor commitment. Of course that wasn’t the case, Marc and Nadia just felt stressed by Gavin’s intensity and were worried to disappoint their dad. He couldn’t see that and finally had to let his anger out by making offensive comments such as, ‘What on earth are you doing, didn’t I just tell you to hit through the shot?’ ‘That’s pathetic, I have never seen you play as badly as today.’ ‘Watch the ball onto the racket, you moron.’ ‘Lucky you have your swimming, I don’t think you’ll ever be a tennis player.’ ‘Are you that weak or just lazy?’ His discouraging behaviour used to infuriate me. I had no intention of letting him carry on like this. Kids are insecure enough in their growing years, the last thing they need is to be put down by their parents. Gavin wasn’t happy to hear that, after all, I was suggesting that he was at fault, and he hated that. There was only one way to respond to my accusations and that was to blow up. Family tennis wasn’t fun, it was war.

Bringing up Champions

95

The situation wasn’t much different with golf, tenpin bowling, mini golf, touch football and so on. All those activities were ruined by the fact that we had to play properly. Not only did Gavin criticize us relentlessly, he also played us off against each other and made comments such as, ‘Just watch your sister, Marc, she knows how to catch a ball properly. You can learn a lot from her.’ Gavin’s behaviour made the kids aggressive and competitive. Most family activities ended with a big argument, which of course infuriated Gavin. After all, he had just treated us to a game of ten pin bowling and now we weren’t even grateful. What a waste of money. He couldn’t see that all those sporting activities turned unpleasant because of his inconsiderate comments and his competitive attitude. His behaviour used to make me very sad and tired. I was desperate to have some fun, but whenever there was an opportunity to enjoy something he ruined it. Years back I used to love tennis, now it was just one more stressful event in my life. Gavin thought that he was giving the children some tools for the future. He had no idea that his constant correcting made the experience unpleasant for the whole family. Today I realize that our disagreements were mainly caused by the following issues.

Gavin used words to pass on information He has a great vocabulary but for many years had no concept of how to use words to achieve a desired outcome. It’s not simply what we say, but how we say it. Depending on the tone, the facial expressions and the body language words can make us feel happy, sad, hopeful, motivated, discouraged, furious and so on. Gavin didn’t understand the ‘chemistry of conversation’. He never complimented, encouraged, motivated or inspired any of us because he didn’t know how to.

Gavin has what Tony Attwood calls ‘visual accuracy’ This means that he has a great ability to learn by watching others. Having such a talent helped him gain tennis and golf skills. The only problem was that nobody else in the family had visual accuracy. For many years Gavin

96

Alone Together

couldn’t understand why we weren’t able to learn and improve simply by watching him. Instead he concluded that we weren’t making an effort.

His thoughts aren’t disengaged from the mouth Mistakes irritate Gavin; he doesn’t understand why others seem to be able to do things without any intensity and sense of perfection. Once he is agitated he finds it hard to hold back the critical remarks. The words spill out before he has time to think about them and often hurts others in the process. He doesn’t intend to do this, on the contrary he is disappointed when he realizes that he’s upset someone, but once the comments are made he doesn’t know how to take them back.

The lack of volume control The tone of Gavin’s voice doesn’t always fit the situation, he often sounds angry when in reality he is simply trying to communicate.

The truth is more important than the feelings of others Gavin had a firm belief that it was okay to say anything as long as if it was true. If someone’s performance was not up to scratch, it was necessary to let them know, otherwise they weren’t able to improve.

How we deal with criticism within our family The family unit should be a place where we can gain confidence and receive support, a place to relax and feel safe. If children are constantly criticized they either start to rebel or get depressed. Gavin thought that he was helping Marc and Nadia with his comments, but instead he was eroding their confidence. Knowing what that meant I decided to counteract his behaviour by being as encouraging as possible. Of course I couldn’t take his words back, but I was able to weaken their effect by disagreeing with what he said. Parents should work together, but in our case that was simply not possible. Having been a teacher for many years I was well aware of the consequences his behaviour might have in the future. The children both dealt differently with the critical attitude of their dad. Nadia screamed back at him and made a big scene when he wanted to watch

Bringing up Champions

97

her play in a tennis competition. She had no intention of letting him analyse the whole game shot by shot afterwards and refused to play when he was there. More than once I saw him hide behind a tree and watch anyway. After all, he needed to see what she did wrong so he could work on her game later. Marc, on the other hand, let Gavin be part of his swimming meets, even though he made critical comments when the result didn’t satisfy his expectations. ‘I’m immune to Dad’s criticism,’ he’d say, but I could see that this wasn’t entirely true. He seemed less keen to play tennis or golf with the family and often joked about the put-down remarks he had to endure. While Nadia voiced her discontent, Marc internalized the problem. Gavin’s attitude gave him enormously high expectations of himself and even today he can’t be happy unless he does well. Since we found out that Gavin has AS things have become much easier. Now I’m able to explain his behaviour to the children. We all talk openly about AS and none of us think that it is weird or scary. It simply means that we have to make some allowances for the fact that we are different. We need Gavin to understand that we don’t have as much attention to detail and that our visual accuracy is nowhere near as developed as his. While constant improvement provides him with a challenge, it stresses us and takes the fun out of life. We can’t be perfect and even though we are happy to listen to his advice we can’t promise always to perform well. Sometimes we just have a bad day, and worrying about it makes it worse. In order to clarify all this I make sure that we continuously communicate with each other. If the kids feel hurt they tell Gavin and he genuinely is able to put things right. Today he often realizes himself when his behaviour has been inappropriate and he is never too proud to apologize and put a smile back onto Marc or Nadia’s faces. He loves them dearly, and desperately wants to do the right thing. It’s important to remember that even though Gavin has AS, he is not the only one in the family who needs to work on himself. We all have to contribute to make our family life pleasant. In the past Marc and Nadia have sometimes copied their dad’s critical attitude and started to put each other down. When I confronted them with the issue they simply said, ‘Dad does it’. I let them know that this was a poor excuse. No parent is perfect, everybody has issues to work on, why copy the behaviours that need improving rather then the ones that are good? Since

98

Alone Together

Gavin learned to be more encouraging, Marc and Nadia get on much better. Quite often I hear Marc praise his little sister and give her advice. Nadia enjoys that very much and is happy to have a brother who cares about her. All this progress comes from the fact that over the past two years Gavin has acquired the skills of motivation, encouragement and constructive criticism. He had to learn those concepts intellectually because he wasn’t able to relay on intuition. The other day I heard him say, ‘I can’t trust my instincts, instead I have to think what would be the best thing to say or do in a certain situation.’ Of course, this is only possible if no stress is present. Once Gavin is agitated he falls back into old habits and says things that he doesn’t really mean. When this happens we all try to ignore his words. We know that they can’t be taken seriously. Inappropriate comments are a form of quick stress release and are not uttered in order to hurt someone. If Gavin ever loses his cool on the tennis court we perform a replay of the events. Role plays are great for helping us deal with difficult situations, they enable us to express our feelings and laugh about behaviours that we find difficult to understand. Gavin is always surprised at how he is portrayed. Another game we sometimes play is one where we have to say two good things about each family member and two things that we think need improvement. This helps us focus on the positives and voice our requests in a constructive manner. For years Gavin’s goal was to turn his children into champions, today he realizes that enjoying sport in a stress-free environment is just as important. It wasn’t my talking that has changed his approach, he learned by experience. Seeing his children having fun was proof enough that they were much happier without constant lectures. It took Gavin years to reach this point and even though we still have occasional arguments, all in all we have heaps of fun!

19. A Good Day Turns Bad in a Matter of Seconds: How We Fix Arguments The most frustrating aspect of our relationship was the fact that one moment everything was fine and minutes later we faced another argument. As with a game of snakes and ladders, it only took one wrong dice roll to send us back to the start. The other day, for example, we went to the beach together. I suggested it thinking it would be good for us to have some quality time in the fresh air. We dropped the kids off at school and left. Once there, we body surfed, walked, cuddled and had lunch under a tree. It was a perfect day and we returned happy and tanned to pick up the children. At home I made afternoon tea then took our son to swim squad and our daughter to tennis. Nadia didn’t want Gavin to watch her play, but he ignored her wish and scooted down to the tennis centre anyway. He had trained her the day before and was now hoping for a great improvement. I stayed for a while and then left in order to cook dinner and pick up Marc. It took longer than expected and by the time I arrived back at the tennis centre I was 15 minutes late. When I saw Gavin’s face I knew that he was angry. ‘I had to get Marc and cook dinner, that’s why I’m late,’ I explained. It didn’t make any difference, my defensive remark only made matters worse. Stressed from watching Nadia’s tennis match and frustrated from having to wait, he exploded. I was stunned and couldn’t believe his anger after we had had such a lovely day. In hindsight I realize that his stress levels must have peaked while he was watching Nadia. After all, he is rarely satisfied about how his coaching

99

100

Alone Together

is utilized in a competition. The event had drained his energy and blowing up provided him with a quick refill, at my expense. It hit me particularly hard as the memory of our nice day at the beach was still fresh in my mind. I tried to restore the harmony and forget about the incident, but Gavin kept on telling me over and over how unreliable I was. He showed no interest in hearing my side of the story and simply wanted to prove that he was right and I was wrong. We were back to square one. Becoming aware of AS obviously hadn’t helped us to resolve our ongoing arguments.

Breaking through the barrier Over time we realized that we had to learn to communicate in order to reduce tension in our relationship. This proved to be difficult. Gavin wasn’t approachable; no matter how carefully I spoke, my words never seemed to reach him. He blocked them off before they had a chance to sink in, giving me the impression that I was talking to a brick wall. As I mentioned in previous chapters Gavin found communicating highly stressful. Once he was agitated he couldn’t hear a word I said. This made me realize that if I wanted to resolve an issue I had to ensure that Gavin stayed relaxed during the conversation. To achieve this I had to consider two major aspects: time and method. Methods that hinder communication Choosing the wrong time For years I tried to resolve our problems in the heat of the moment. This was totally and utterly useless. In an argument Gavin’s stress levels are at their highest, which means he closes himself off. He can’t hear what others are saying and often isn’t aware of his own words. If I tell him a day later what he said, he always seems genuinely surprised and has no recollection of it. Once he is angry he can only deal with his own inner turmoil. If I choose this moment to have a deep and meaningful talk I’m wasting my words. I first have to give him time to cool off. Of course, I don’t always manage to do that. Sometimes I can’t wait and let out what I need to say right there and then. This helps me to release my tension but of course it doesn’t resolve anything. If I wish to overcome our ongoing communication problems I have to learn to wait for the right time. Trouble is, even if I do that, Gavin

A Good Day Turns Bad in a Matter of Seconds

101

still might refuse to discuss certain issues. Especially if I ask him to talk to me face to face.

Sitting opposite each other This is clearly the worst method of communication. It’s threatening and implies that the partners are lined up for battle. In those situations Gavin can’t relax. He worries that our discussion will lead to another argument because he isn’t sure what is expected of him. For years he thought that honesty was the best policy but over the years he had come to doubt that. The forced eye contact causes him to lose concentration. He feels anxious and stressed and decides to end the conversation, either by walking off or getting angry. In time I realized that if I wanted my words to reach Gavin, I had to search for alternate methods of communication.

Methods that enhance communication Letter writing I tried this strategy out one day after we had an argument and it proved to be successful. At first I was a bit worried that Gavin would reject my attempt to communicate with him in a written form, but he seemed positively surprised to receive a letter. I had to go out that day and when I got back he said, ‘Thanks for writing to me; I understand your point of view much better now.’ We cuddled and made up. Letters provide the writer with the opportunity to express emotions freely without having to face another argument. They can be written in privacy and peace, which means emphasis can be placed upon choosing the right words. Parts that sound too harsh can be rewritten. Feelings can be voiced straightaway, preventing frustration and ensuring that emotions don’t get bottled up inside. Letter writing brings instant relief from sadness, anger and hurt. The receiver, on the other hand, can read the letter in his own time away from others. Being alone means there is no eye contact required and no expectations are present. Having the partner’s thoughts on paper makes it possible to re-read parts that seem difficult to understand. Written communication isn’t threatening; it’s safe, predictable and stress free. With no fear

102

Alone Together

of emotional outbursts such as anger or tears, the reader can concentrate on the content. Undistracted he’ll be far more likely to understand the meaning of the words.

Massage Of course, I wasn’t always in the mood to write whenever I needed to get something off my chest. I discovered that massage also helps to enhance communication. While some people with AS might not like to be touched, Gavin finds receiving a massage makes him feel special and at ease. His stress and his anxiety disappear. Facing the pillow ensures that he isn’t distracted by external stimuli; his associative thinking is at rest and he is able to concentrate on what I’m saying. The pressure of my hands helps to soften his skin and let my words sink in. Through massage I am able to reach him.

Talking while the partner engages in a relaxing activity Earlier on I mentioned that Gavin refused to communicate while he was relaxed. It’s understandable. Due to his constant stress, times of relaxation were rare for him and had to be treasured. Once he felt at peace he was determined not to let anybody jeopardize his state of mind. I wasn’t aware of his struggle to stay calm and often choose those moments to have a conversation. It isn’t easy to find the right time to communicate. I mentioned previously that it’s essential to talk while our partners are peaceful. Now I’m saying that it isn’t advisable. It sounds complicated but it’s really quite simple. Conversation is possible when our partners engage in a relaxing activity, as long as we ensure that we do not put stress upon them with the way we talk. Crying, complaining, being angry and critical are behaviours that won’t get us anywhere. If we blame our partner he’ll simply roll down the shutters and let our words bounce off. He is used to it after years of being criticized by teachers, fellow students, family and workmates. Shutting down is easy for him, but it leaves us sad and frustrated. Here is a little example that shows how we were able to solve an argument while Gavin engaged in a relaxing activity.

A Good Day Turns Bad in a Matter of Seconds

103

We were staying in a hotel in Surfers’ Paradise when Gavin kept complaining about the children’s undeveloped tennis skills. I saw no need for that; his constant whingeing ruined the holiday atmosphere and made us all miserable. I told him how I felt about it but he didn’t seem to care. Instead he imitated my words and made jokes about the fact that I was upset. This infuriated me more and I tried desperately not to explode. He found it hilarious and kept on teasing me, happy to see my anger grow. That day I wasn’t in the mood to give him a massage or write a letter, but if I wanted to save the holiday I had to make him understand why I was so disappointed with his behaviour. I was smart enough not to attack him; instead I waited until he decided to have a bath. As soon as he was relaxed in the bubbles I walked into the bathroom and started to talk. He was about to hum a song over my words (meaning he wasn’t in the mood to talk), but I made him stop. ‘Don’t look at me,’ I said and started to brush my hair in front of the mirror. ‘I don’t want to argue with you, but I need you to understand how I feel. You don’t have to answer or say anything, just listen.’ He sat in the bath, eyes closed, body relaxed and I spoke. I tried to choose my words wisely, leaving out remarks that sounded angry and accusing. After I spoke I left the bathroom, glad to have had the chance to express my emotions. Gavin stayed in a bit longer. When he finally walked out he was a different person. He had dropped the schoolboy behaviour and came over to give me a hug. ‘I’m really sorry,’ he said and I could see that it was genuine. The argument was resolved and we were able to enjoy the rest of the holiday.

Summary No matter which method of communication we choose, if we decide to talk we have to ensure that our partner doesn’t feel attacked, threatened, put down or forced to listen when he is already stressed. By ignoring the above guidelines we simply create another argument, and that’s something we definitely don’t need. It’s essential in a relationship to be able to express thoughts and emotions otherwise it makes it impossible to find a common understanding. In an Asperger marriage this is even more important because none of us can rely on intuition. Being different requires us to communicate and learn to explain our emotions. This isn’t easy for Gavin, as he often doesn’t know how he feels. The other day I said, ‘If only I knew how you feel,’ He answered ‘Join the club.’

20. How a Diagnosis Helps: Resources and Opportunities for Improving the Relationship In my opinion a diagnosis is essential in order to improve the relationship. Only if we become aware of our differences will we be able to move forward. Often people with AS are quite happy to find out why they have felt so different for all those years. Before being diagnosed it’s important to remember that AS is by no means an imperfection, on the contrary, various articles suggest that the Asperger brain is more advanced and evolved then the neurotypical one. We can’t overlook the fact that geniuses such as Beethoven, Mozart, Van Gogh, Michelangelo, Orwell, Einstein, Darwin and many other famous people are thought to have had AS. Gavin found great relief in knowing that there was a reason for his sometimes unusual behaviour. The diagnosis enabled him to see that he had to become familiar with the social rules of neurotypicals in order to fit in. This didn’t mean he had to change who he was, he simply had to learn to act accordingly in certain situations. Today he is so good at it that I often forget that he has AS. Just the other day he said to me, ‘Why do you give partners advice on how to have a successful Asperger marriage? You don’t make any allowances for me anymore and you don’t use the strategies that you suggest in the book.’ He was right. Somehow I had convinced myself that he had become a neurotypical. This is a big danger in Asperger marriages. We have to ensure that we let each other be who we are. AS isn’t a disease and so doesn’t have a cure. It’s like a different culture and has to be respected. A diagnosis isn’t a statement of who is wrong and who is right. A diagnosis simply manifests that there is a considerable difference in

104

How a Diagnosis Helps

105

perception and both partners have to try to understand each other. If we feel that we have to change who we are, we lose our identity and fall into a state of confusion, which will not benefit the marriage in any way. Only after Gavin’s diagnosis were we able to access a wide variety of resources and opportunities to overcome our difficulties.

Resources Books about Asperger’s Syndrome I have been able to read books from authors on the autistic spectrum such as Temple Grandin, Liane Holliday Willey and Donna Williams and in doing so have received a better insight into the condition. Gavin didn’t fancy reading the books with me, but he listened to what I read and often commented that this was exactly how he felt. I also searched for answers by consulting books by Tony Attwood and Maxine Aston, both psychologists specializing in the field of AS. Some that I recommend are:

• Thinking in Pictures by Temple Grandin. London: Bloomsbury, 2006.

• Pretending to be Normal by Liane Holliday Willey. London: Jessica Kingsley Publishers, 1999.

• Nobody Nowhere by Donna Williams. London: Jessica Kingsley Publishers, 1998.

• Somebody Somewhere by Donna Williams. London: Jessica Kingsley Publishers, 1998.

• Aspergers in Love by Maxine Aston. London: Jessica Kingsley Publishers, 2003.

• An Asperger Marriage by Gisela and Christopher Slater-Walker. London: Jessica Kingsley Publishers, 2002.

• Asperger Syndrome and Long-Term Relationships by Ashley Stanford. London: Jessica Kingsley Publishers, 2002.

• Asperger Syndrome by Tony Attwood. London: Jessica Kingsley Publishers, 1998.

106

Alone Together

• The Complete Guide to Asperger’s Syndrome by Tony Attwood. London: Jessica Kingsley Publishers, 2006.

Asperger Services Australia Straight after the diagnosis I made contact with Asperger Services Australia. We became members, gaining access to the monthly newsletter and the well-equipped library. We also received information about upcoming events and seminars. Being a member also enabled us to go to the monthly coffee mornings and talk to other people who had AS in the family. One day Gavin came with me and joined in the discussion. It was a big hit and everybody found it highly interesting and beneficial. It helped the parents understand their children better, the partners to see the world from an Asperger perspective and those with AS to look at their condition with a sense of humour. For other useful organizations, see the Useful Contacts and Further Reading.

Seminars and lectures We have been able to attend seminars with speakers such as Tony Attwood, Michelle Garnett and Isabelle Henault. The lectures have been fantastic and given us knowledge as well as inspiration for our marriage.

Internet sites www.faaas.org is a great internet site for families of adults with AS. It’s nice to know that there are many other couples in the same situation. For other internet sites, see the Useful Contacts and Further Reading section at the back of the book.

Opportunities Improving communication We realize that we don’t speak the same language and therefore have to make an extra effort to understand each other.

How a Diagnosis Helps

107

I can explain Gavin’s behaviour to the children Knowing about AS has definitely helped Marc and Nadia understand their dad better. It brought us closer as a family and made us realize we have to be a team.

I can talk to other ‘Cassandras’ In Greek mythology Cassandra was a daughter of King Priam of Troy. She captured the eye of the Greek god Apollo. He fell in love with her and decided to give her the ability to see the future. However, when she didn’t return his love he placed a curse on her so that no one would ever believe her predictions. The neurotypical partners in Asperger marriages are often referred to as ‘Cassandras’. Nobody seems to believe them when they try to talk about the difficulties that arise in their relationships. Through Asperger Services Australia I have met other Cassandras. Talking to them has been very rewarding, as we were able to share ideas.

We can tell others about Asperger’s Syndrome, but we don’t have to It’s important to choose carefully who to tell about AS; not everybody accepts different mind sets. I leave it up to Gavin to decide who he wants to inform. He’s quite open about it and often tells others; it helps him explain why he’s a bit eccentric. None of our friends seem to mind. Let’s face it, we’re all unique. People with AS are quite lucky, at least there are books on their uniqueness; the rest of us are in the dark about who we are.

21. The Stress Factor: Understanding Each Other In the process of writing this book we have learned many things about each other. The most important message that I received from Gavin’s explanations was the fact that he is constantly stressed. I wanted to be able to put myself in his shoes and it was very easy. I just had to look at how I felt when I was under stress. Writing this book has given me plenty of opportunities. While I was sitting at the computer trying to put my thoughts into words I wasn’t very sociable. I often felt agitated, short-tempered, intolerant of noise, confused and forgetful. Here is a little example. One day I had been on the computer all day trying to rewrite a chapter. After eight hours I finally got there. That night I was meant to go out for dinner with my girl friends. Some were going to meet me at my house and others were meant to catch up with us at the restaurant. At seven o’clock three of my friends arrived in the same car and asked me to hop in and I did. Still stressed, I talked a lot until my mobile phone rang. The call came from two other friends who were waiting at my house. ‘Where are you?’ they asked. I felt like a fool. The fact that I had forgotten them was nothing short of rude. How on earth was I meant to explain my strange behaviour? Gavin saved the situation and gave my two friends a lift. At the restaurant everybody made out that it was okay, but I could see the look on their faces and knew that they thought I was a bit weird. I had never done anything like this before, but obviously the stress of writing had affected me. I came to the conclusion that though I’m a neurotypical, my behaviour resembles Gavin’s when I’m under stress. I also become sensitive to touch, intolerant to loud noises, agitated, hyperactive, forgetful, short-fused and

108

The Stress Factor

109

anxious. I talk more intensely, care less about others and wish to be left alone. The only difference is that my nervous system isn’t always agitated and my stress disappears if I’m not challenged, which means I have time to recuperate. I’m not an expert on AS, but all this makes me wonder if some of the Asperger behaviours are simply a result of stress. If we can help our partners to reduce their stress levels it might have a positive affect on the relationship. Gavin and I found that it works. He has AS but when he is relaxed he is warm, loving, understanding, kind, cuddly and caring, just like anybody else. Reducing the stress in our partner’s life sounds easy, but in reality it isn’t. A lot of stress factors are beyond our control. Gavin says that moments when his mind is at rest are very rare. His nervous system is constantly in survival mode and he has to use all his energy to hold his associative thinking at bay. Life is full of change, unpredictability, clutter, loud noises, bright lights, uncontrollable situations and noisy people. I’m fully aware that all of these aspects add to his stress, but I’m not able to remove them as they are part of everyday life. Writing this book has challenged both of us. We often had to read parts of it together, as I wanted to make sure that my understanding of Gavin’s condition was accurate. He found the procedure very stressful, sitting with me behind the computer: discussing ways to express his thinking was more than he could tolerate. It raised his heart rate and made his head fill up with unwanted thoughts. While I found it easy to concentrate, he was distracted by pictures that weren’t hanging straight, pens that were out of place, and staplers which weren’t filled up properly. My questions about his experiences with AS added to his stress and triggered his associative thinking. Usually he lasted about 30 minutes before he had to get up and move around to calm his restless mind. I felt guilty, but I really needed his input, even though I could see how difficult it was for him to concentrate. In my desperation to get my work done in time I started to think of techniques that might help him focus for longer. That’s when I discovered the enormous benefits of a head massage. I remember this day vividly as I was going to send my first draft to the publisher and needed Gavin to read two chapters with me. After five minutes he started to rearrange pens and stare into thin air. I stood up and asked him to read out loud while I massaged his scalp. The result was stag-

110

Alone Together

gering. Not once did he lose concentration. Instead he worked with me for two hours straight. Since then I have used this technique many more times and the effect has always been the same. It relaxed him and enabled him to focus on the work that had to be done. I’m not a brain expert and have no idea why a head massage is so beneficial for Gavin, but it could be that the increased blood flow to the brain enhances his concentration, while the pressure eliminates feelings of stress and fear. The associative thinking is one of the main stress factors in Gavin’s life and is at its worst when his mind has time to wander. Once his head is full of unwanted thoughts he becomes quiet and unapproachable. His eyes look blank and he refuses to be touched or talked to. The other day we drove home from the beach and I could feel that he was starting to get tense. Looking to relax his overactive mind I reached over and started to massage the lower part of his head right where the cerebellum lies. It was the only part I could reach comfortably from my seat. As soon as I started Gavin said, ‘What’s this? It really relaxes me and stops my thoughts.’ I massaged him all the way home enjoying the great effect that it seemed to have on him. He started to talk and laugh, while his eyes suddenly had more expression. For some reason massage of the cerebellum seemed to override his thoughts and take away the stress and anxiousness. Gavin commented that the relief was instant and very efficient. Since then we have used this technique on various occasions and it has never disappointed us. We are glad to have found a way to stop these stressful thought associations. I’m continually looking for ways to help Gavin relax, but unfortunately I’m occasionally stressed myself, in which case I make things worse rather than better. I have discussed this issue with Gavin and he is aware that even though I don’t have AS I’m not always relaxed and in a position to be supportive. It frustrates me, but all I can do is try my best and accept that I’m not perfect. Over time I have discovered that listening to music, exercise and good food can have a positive effect on Gavin’s state of mind. Unfortunately he doesn’t always remember to take these factors into consideration. He struggles to learn from prior experiences and often forgets that preservatives, additives, colourings and sugar aren’t good for him. Once he has indulged himself with sweets, chocolate and soft drinks he generally remembers, but of course by then it’s too late and his mind is already racing. I try to cook

The Stress Factor

111

healthy meals which he likes, ensuring that he has a balanced diet. For a while I was even able to convince him to take vitamin tablets containing various B vitamins, magnesium and zinc. They seemed to improve his stress levels, but after a few weeks he gave them up saying he didn’t need tablets to help him relax. According to Gavin tablets are for sick people, not for superhumans like him. While his diet could be better he’s pretty good at ensuring that his exercise needs are filled. Moving releases special hormones called endorphins. They give us a feeling of well being and work wonders against anxiety and depression. While this knowledge alone inspires me to exercise, Gavin needs a different motivation. The fact that something is good for him is not enough to make him do it. Fortunately tennis is his special interest and it provides him with three major benefits.

• It energizes him because he is good at it. • It makes him exercise and provides happy-making endorphins. • It’s an outdoor activity, which means the sunlight can replenish his serotonin. (I have read that people with AS often have low serotonin levels, a fact that can lead to depression.) There are various methods to relieve stress. Libraries, bookshops and even video shops offer resources on this topic. While meditation, yoga and massages can bring relief, hobbies can also have a positive affect on the nervous system. The special interest is very important for people with AS and works as a security blanket against anxiety. If our partner has no hobby we might be able to help him find one. Of course it has to be an activity which he enjoys and is good at, otherwise there is no way that he will do it. There are plenty of options such as painting, reading, writing, walking, swimming, golf, etc. I personally believe that whenever possible the activity should be done outdoors, because of the benefits of sunlight on the serotonin levels. I don’t think that people with AS enjoy being outside in the middle of the day, because of their sensitivity to light, but early mornings and late afternoons should be fine. Unfortunately, computer activities are often carried out indoors, but maybe a laptop would open up the option to spend part of the day outside. It’s important to remember that stress doesn’t only affect people with AS. It often troubles their partner as well. This happens because we don’t

112

Alone Together

understand each other’s intentions. Never knowing what our partner is thinking or feeling puts us on edge. Living in an Asperger marriage is comparable to a relationship between two people from different cultural backgrounds. While both cultures feature positive aspects they show differences regarding language and behaviour. Recently I heard about a condition called cultural stress. It usually affects people who have come to live in a new country. Interestingly enough it also explains why partners often struggle in an Asperger marriage. Apparently cultural stress occurs when we are cut off from familiar ways of communicating and interacting with others. When we are faced with a new environment offering a different ‘right way’ it can affect our personal identity and selfesteem. While I was confronted with cultural stress in the marriage, my move overseas doubled the symptoms. Apparently it’s quite common for people with AS to marry somebody from overseas. It camouflages the communication problems and makes partners believe that their struggle is simply caused by the new surroundings. When people move to a new country they generally know that they have to make allowances regarding language and behaviour, while in an Asperger marriage partners are often not aware of the cultural difference, especially when they have the same nationality. For many years I was stressed and couldn’t understand why I found it so difficult to relax in Gavin’s presence. To ease my hyperactivity I ran, swam and walked, but all these activities only provided me with temporary relief. As time went on my stress displayed itself in anxiety attacks and weight loss. I even started to show some Asperger behaviours and wondered if I might be on the spectrum myself. Today I know that my hyperactivity as well as my sudden need for routine and peaceful surroundings was simply caused by the cultural stress in our marriage. After years of confusion I’m finally on the way to rediscover myself. The cultural difference between Gavin and me will always be there, but we can ease it by learning each others language and way of life. It’s always easier to socialize with people from the same background, that’s why I often take breaks and talk to other neurotypicals.

The Stress Factor

113

I’m still more relaxed in Switzerland, because there I only have to deal with the cultural stress in the marriage, while in Australia I receive a double dose. Gavin, on the other hand, faces cultural stress wherever he goes – this might explain why socializing drains him so much. Having an accent is a clear sign that somebody comes from a different culture. People usually make allowances for foreigners by speaking slower and explaining the customs of their country in a way that is easy to understand. AS isn’t visible, which means no allowances are usually made for people on the spectrum, even though they have a different way of thinking, just like somebody from a foreign culture. This may lead to increased cultural stress and be responsible for many of the Asperger behaviours.

22. Our Life Today Love is often portrayed as a connection between two like minded souls, suggesting that we have to be similar in order to have a good relationship. German philosopher Friedrich Nietzsche obviously didn’t agree with this thesis: ‘What else is love but understanding and rejoicing in the fact that another person lives, acts, and experiences otherwise than we do.’ Being alike makes a relationship easy, but being different challenges us to learn, grow and develop into more complex human beings. We cannot change who we are; if we try, we may lose our sense of identity. The French poet and romantic writer Victor Hugo stated: ‘The supreme happiness in life is the conviction that we are loved. Loved for ourselves, or rather loved in spite of ourselves.’ I have no intention of saying that an Asperger marriage is easy. On the contrary, I know very well how draining it can be. Every relationship is different and only the people involved can decide if they want to continue their journey together. For us it was, luckily, not too late. After years of searching we have finally found each other. As you know from previous chapters we still often struggle to reach a mutual understanding, but we are both prepared to make the effort. After all, as William Shakespeare wrote in A Midsummer Night’s Dream, ‘The course of true love never did run smooth.’ For many years I thought I was the only one who was suffering in our marriage. Today I know that Gavin felt as lonely as I did. Day in and day out he had to live with the fact that nobody seemed to understand his way of thinking. People were always upset with him for reasons he couldn’t comprehend. After many years he gave up because, no matter how hard he tried, after a while everybody turned away from him. I was no exception.

114

Our Life Today

115

When I met Gavin I thought that I had found the love of my life; today I know that I did. My initial feeling didn’t fool me – he really is a lovely person – but he has AS. Since we have learnt to communicate our relationship has improved immensely. There are so many aspects I love about him: his loyalty, his good heart, his intelligence, his humour, his interest in world current affairs and his dedication to sport. Since we found out about AS he’s tried very hard to show me that he cares. Here is a little example. Gavin has always been great at making holiday plans. One day he wanted to go on a cruise in Alaska, a week later he planed a trip to Los Angeles, and finally he decided that it was better to go to the same resort as last year. After all, it was only an hour away and we knew that it was nice there. Gavin always liked predictable holidays, while I love adventure. When I first came to Australia I travelled around the country, slept under trees, hiked through rainforests and never quite knew where I would end up. I love wilderness while Gavin finds it prickly and messy. He doesn’t feel drawn to new places; instead he likes to visit the same destinations because he is sure that he will enjoy his time there. It’s not only the venue that he aims to keep the same but also the structure of the day. In summer that might be: breakfast, beach, lunch, pool, tennis, followed by a pizza restaurant; changed slightly the next day to: breakfast, tennis, beach, lunch, pool, TV, and ending with fish and chips. In winter we usually go where there’s snow. These holidays please us both. I have my nature fill while Gavin can keep his structure: breakfast, skiing, lunch, skiing, dinner, bed. Once he likes something he will decide to do it again and again because he knows that he’ll enjoy it. ‘Been there, done that’ seems like a safe option. When I first mentioned Tasmania he wasn’t keen. What were we meant to do there? Travelling around didn’t appeal to him. What if they didn’t have tennis courts? After a few attempts I gave up on the idea. It didn’t really matter, I was happy to go anywhere as long as we all had fun. Gavin didn’t forget my wish though and booked plane tickets to Tasmania. He made it his task to plan the whole trip. The more he read about it the more interested he became, and before long he started to book cruises, ghost tours and, of course, resorts with tennis courts. It was a great holiday and it was sweet of Gavin to take me there even though it wasn’t his choice of destination. We made sure that there was adventure mixed with tennis, so it pleased us all equally, and

116

Alone Together

in the end Gavin really had a fantastic time. It showed him that new places can be fun. Another great improvement was that I was able to go and visit a friend in Cairns while Gavin looked after the children. He did a fantastic job, cooked every night and kept the house neat and tidy. The three of them had a great time without me and were all happy and bubbly when I came back. Gavin picked me up from the airport in the middle of the night and then spoilt me with a hot water bottle and a warm tea. I was very happy and glad to know that I could trust him to look after things for me when I needed a break. After all those years we finally have the relationship I always longed for. Of course Gavin will always have AS but he has learned so much over the last two years. He can now tolerate different opinions, deal with changes, give a bit of emotional support, hold back with harsh criticism, have fun when we play tennis, accept that I’m not a logical thinker, and love me and the kids even though we aren’t perfect. The most important thing without a doubt, is the fact that he has learnt to listen. As German-American theologian and philosopher Paul Tillich says: ‘The first duty of love is to listen.’ Of course, when Gavin is stressed he still falls back into old habits, but usually not for long. His continuous effort is admirable and it shows me how much he cares about us. Living with a partner from a different planet and nurturing a family where AS is present will always be challenging. It requires patience and understanding from everybody but it’s possible. Thankfully Gavin and I have finally become friends. We are hoping to give our children strength and security so they can develop into confident and happy individuals. Now we are looking forward to the second part of our journey in which we will travel, play sport and enjoy our life together. Of course we will always struggle from time to time but, as the famous American psychologist Albert Ellis said, ‘The art of love is largely the art of persistence.’ Gavin and I are different but we share many common interests and have similar goals in life. I’d like to finish our story with the famous quote from the French writer and aviator Antoine de Saint-Exupéry: ‘Love does not consist in gazing at each other but in looking outward together in the same direction.’

Epilogue by Gavin Bentley

Perhaps the single most important thing to discover on the journey of life is ‘who am I?’ Only after discovering this can you truly improve on your weaknesses and properly utilize your strengths. Only this discovery will allow you to feel completely comfortable in your own skin. It doesn’t mean we won’t still have issues to deal with but it does mean we can deal with them. Finding out I have AS has been the biggest turning point in my life; now I have an explanation for my actions and feelings. Now I know who I am, and it’s not what I thought I may have been for more than 30 years. I’m not crazy, bad, uncaring or insensitive. I’m just me, different to most but not different to all. I have issues to deal with, but who doesn’t? I also have strengths that most people only dream of. I feel that I enter the next phase of my life with the tools to make it fuller than the time I leave behind. It wasn’t a bad time, it just could have been better. There will be setbacks in the future, but I’m prepared to try and meet the challenge. Any person with AS should grab the second chance that knowing provides. Embrace the fact that you are different, but still work on yourself as everybody should, to benefit you and your family. Now to leave behind the spiritual and provide something a little more tangible. The overwhelming discoveries which have improved my life since finding out I have AS are quite simple. I exercise daily, be it tennis, golf, squash, swimming, walking, kicking a football or riding a bike. Even my holidays are based around skiing, body surfing, tennis, etc. I usually feel free and unworried afterwards. I don’t trust my natural instincts, responses and reactions. In many situations I must try to pause for a moment and utilize my learned responses. I don’t always succeed, but ‘nurture’ is defeating ‘nature’ more and more often. I continually remind myself of what is important in my life and that we don’t have unlimited 117

118

Alone Together

opportunities. In my case it’s my family. This sounds easy, but it isn’t. What’s more it’s an ongoing process. If I start a day badly it usually gets no better, so I work really hard to set the tone early. I still fail more than 50 per cent of the time but that’s better than 75 per cent. It’s important not to underestimate the value of a good diet and plenty of sleep. I also work hard to control my intensity when I communicate, socialize or even play sport. Finally, I remove myself as often as possible from situations and people that cause excessive stress. When I fail I know that I need downtime alone to release the tension. Thanks to my lovely wife Katrin for having the resilience and determination to find some answers. She has taught me that most problems are only insurmountable if you see them that way. Now we are looking forward to years of fun and laughter. As I always say, ‘I married you for fun, not for problems.’

Useful Contacts and Further Reading

Support is important but sometimes it’s hard to find the right sources. Already struggling with everyday life, individuals with AS and their partners and families often give up in their search for answers. In order to avoid this I have put together a list of websites that I regard as relevant to relationship issues, family matters and support. I’ve tried to simplify the process of finding specific links for those of us who aren’t computer wizards. I hope this will enable everybody to reach their topic of interest as quickly as possible. If you know or suspect that somebody in your family has AS, contact a support group near you. It will provide you with the opportunity to discuss your concerns with people who understand.

Websites www.aspar.klattu.com.au ASpar offers support and advocacy for adults who were raised by parents with an Autistic Spectrum Disorder or AS. An email list is available to encourage people to exchange experiences. Among other services ASpar features a Parenting Ability Checklist. It’s a test that focuses on issues that might affect the children of families where AS is present. The information is relevant to individuals with AS as well as their neurotypical partners. While the person with AS might struggle with certain parental behaviours, neurotypical spouses often show signs of the ‘Battered Partner Syndrome’, an aspect which aggravates the problem further. Good parenting requires both parties to have a closer look at themselves. ASpar is mainly a service for adults who have been affected by their childhood, but the website benefits anybody who lives in an Asperger marriage. ‘The parent test’ is a great reminder of what to consider when bringing up children. 119

120

Alone Together

www.asperger-marriage.info This is the website of Chris and Gisela Slater-Walker, authors of the book An Asperger Marriage (2002). Among other topics this site features a ‘Survival Guide’ for people with AS written by Marc Segar. He talks from personal experience and his work helps neurotypicals gain a better insight into the life of a person with AS. It also gives people with AS inspiration to survive their daily battles. Marc covers AS issues such as worrying, looking on the bright side, body language, conversation, humour and conflict, points about going out and finding the right friends, education, living away from home, jobs and interviews, driving, travelling abroad and many more. He concludes with what he calls ‘a personal in-depth analysis of the problem’. Chris and Gisela Slater-Walker’s website also offers a closer look at their successful book An Asperger Marriage.

www.aspia.org.au Aspia PO Box 57 Macarthur Square LPO Macarthur NSW 2560 Australia. Mobile phone: 0408 817 828 Email: [email protected] The purpose of Asperger Syndrome Partner Information Australia Inc. is to acknowledge the difficulties and differences that occur in Asperger marriages and provide objective information on how AS can impact on a relationship and what steps can be taken to reduce the confusion and conflicts that are part of life for those affected.

www.aspires-relationship.com Linda Newland 2990 NE Saber Road Bend OR 97701/ USA Mobile phone: 1 541 408 0872 Email: [email protected] Asperger Syndrome Partner and Individuals Resources, Encouragement and Support (Aspires) is an online resource for spouses and family members of

Useful Contacts and Further Reading

121

adults diagnosed or suspected to be on the autistic spectrum. The approach of this group is directed towards solving problems in relationships. It features an email subscription list for individuals with AS and those who have a family member with AS.

www.as-if.org.uk Asperger’s Syndrome Information and Features is a great website that offers a list of Asperger Support Networks all over the world. To find them locate ‘Resources’ at the top of the home page. Click it. Now click ‘Support’. Here you’ll find sites for the UK, Europe, US, Canada, Australia, New Zealand and the rest of the world. Click on any of those places and you’ll find sites for every country. There are about 49 listed in the UK, 57 in Europe, 19 in the USA, 11 in Canada, 11 in Australia, 2 in New Zealand, 4 in Africa, 14 in Asia, 7 in the Middle East and 7 in South America. Other than that, this site also explores issues such as diagnosis, lifestyle, etc. By clicking on ‘Community’, you’ll find pages on family matters, pen pal listings, a discussion board, chat rooms, campaigns, poetry, albums and other topics.

www.faaas.org Families of Adults Afflicted with Asperger’s Syndrome features a bulletin board that deals specifically with the issues of family members, friends and loved ones of individuals with AS. Among different topics the website displays a search feature. By typing in ‘Cassandra Affective Disorder’ you’ll find a description of the symptoms that can appear in neurotypical partners and family members afflicted by AS. The article is written by Maxine Aston and gives a great insight into the topic of AS relationships. www.Katrin-Gavin-Bentley.Piczo.com My website has photos, a biography, and comment board. Please feel free to add your opinions and useful information for people in a similar position. www.maxineaston.co.uk Maxine Aston is one of the leading psychologists in the field of relationships affected by AS, and is the author of Asperger’s in Love and The other half of Asperger Syndrome. She has a clinic in Coventry, England where she provides counselling for individuals, couples and families. Maxine’s website features

122

Alone Together

useful information such as: a questionnaire for couples who suspect that they are in an Asperger marriage, an insight into Cassandra Affective Disorder, a description of AS, and a schedule of her workshops and seminars.

www.nas.org.uk The National Autistic Society has a fantastic website that is full of useful information. It offers a wide variety of resources, links, support groups and help lines for people living in the UK as well as anywhere else in the world. The home page displays shortcuts to different topics, one of them is specifically for family members (including carers and partners). To find out more about this topic click on ‘Information for’ then click on ‘Partners’. Once the article comes up click on ‘Issues for Partners with Asperger’s Syndrome’. There you’ll find interesting information for Asperger spouses. A great feature of the National Autistic Society is the Telephone Help Line: 0845 070 4004 (10am–4pm Monday to Friday, calls are charged at local rate). An interpreting service will translate calls into 120 different languages as long as landlines are used. Other services include: Parent to Parent line, Advocacy for Education Service, Help Line Email Service and a variety of Information Sheets.

www.tonyattwood.com.au Professor Tony Attwood is one of the world’s leading experts on autism and Asperger’s Syndrome. On his website he offers 31 topics that can be accessed by clicking the appropriate expression in the left-hand column. By clicking ‘Support Groups’ you’ll find a list of support groups in Australia, UK, Israel, New Zealand, US, Canada, Singapore, Denmark and Spain. Tony’s website offers great information about AS and various useful links. You can access them by clicking ‘Links’ on the left side of the web page. Another great feature is the book descriptions. By clicking on different topics such as ‘Books and Resources on Emotions’ or ‘Books on Social Skills’ you can find reading material on the subject that interests you. The website also introduces the new clinic ‘Minds and Hearts’ in Brisbane. The local contact number is (07) 3844 9466 and the international number is +61(0) 7 3844 946. Tony Attwood also introduces his newest book The Complete Guide to Asperger’s Syndrome (2006) on the website.

Useful Contacts and Further Reading

123

www.udel.edu/bkirby/asperger O.A.S.I.S., the ‘Online Asperger Syndrome Information and Support’ site, is a great online service for Americans as well as for people afflicted by AS worldwide. It offers various services. To find your topic of interest just check the column on the left of the home page and click on the link that interests you. Here is just a short selection of the subjects on offer: What is AS?; Bookstore; Papers and Articles; Education; Support Groups; Schools and Camps; Clinicians; Kids’ Corner; Family Matters and Adult Issues. By clicking on ‘Support Groups’ you’ll find:

• • • •

Local American support groups and resources (including Canada) National Support Groups Online Support Groups International AS/Autism Sites.

If you click on ‘Message Boards’ you’ll find a page, ‘Message Boards and Chats’, where you can choose to join one of the following forums:

• Asperger Syndrome Forum (open to parents and adult family members of individuals with AS. Adults with AS are also welcome)

• Raising Teens and Young Adults with AS Support Forum (for parents and caregivers of teens and young adults who have been diagnosed with AS. The forum is not open to the teens themselves or to the parents of younger children)

• Neurotypical Parents Forum (for neurotypical parents and caregivers of children who are diagnosed with AS who wish to discuss raising children from a neurotypical perspective). Another good site to get into is the one called ‘Adult Issues’. By clicking the topic in the left-hand column, you’ll come to a page that presents resources and contributions from and for individuals with AS and autism. One of the seven links focuses on ‘Spousal Support’. If you’re interested in ‘Family Matters’, click on this. There you’ll find contributions from family and friends as well as links to family sites.

124

Alone Together

Support groups Australia The most informative website for support in Australia belongs to Tony Attwood: www.tonyattwood.com.au. For people without internet access I have listed a few different autism associations around Australia. They can be contacted by phone or mail and will be able to provide you with information about local support groups and events. Autism Queensland PO Box 354, Sunnybank, QLD 4109 Tel +61(0) 7 3273 0000 Fax +61 (0) 7 3273 8306 Email: [email protected] www.autismqld.com.au Autism Victoria PO Box 235, Ashburton, Victoria 3147 Tel +61 (0) 3 9885 0533 Fax +61 (0) 3 9885 0508 Email: [email protected] www.autismvictoria.org.au Autism SA PO Box 339, Fullarton, SA 5063 Tel +61 (0) 8 8379 6976 Fax +61 (0) 8 8338 1216 Email: [email protected] www.autismsa.org.au ACT Asperger Syndrome Support Network (A.C.T) SHOUT (Self Help Organisations United Together) PO Box 717, Mawson, A.C.T 2607 Tel +61 (0) 2 6290 1984 Fax +61 (0) 2 6286 4475 Email: [email protected] www.assn.org.au

Useful Contacts and Further Reading

125

Click on ‘Links to external websites’ to find 22 useful links, most of them based in Australia. Asperger Services Australia PO Box 159, Virginia, QLD 4014 Tel +61 (0) 7 3865 2911 Fax +61 (0) 7 3865 2838 Email: [email protected] www.asperger.asn.au Asperger Services Australia is the largest support group in the southern hemisphere. It is run by volunteers and offers its members telephone counselling, coffee mornings, newsletters, information about upcoming seminars and use of the extensive library. Autism Association of Western Australia Locked Bag 9, Post Office, West Perth, WA 6872 Tel +61 (0) 8 9489 8900 Fax +61 (0) 8 9489 8999 Email: [email protected] www.autism.org.au

Canada Autism Society Canada Box 22017, 1670 Heron Road, Ottawa, Ontario K1V OC2 Tel +1 613 789 8943 Fax +1 613 789 6985 Email: [email protected] www.autismsocietycanada.ca Click on ‘Provincial and Territorial Societies’ to find local branches and support groups. If you click on ‘Life with ASD, Resources for Families and Caregivers’, you’ll come to a page called ‘Overview’. There you can select a specific topic. If you are looking for spousal support, click on ‘Siblings, Spouses and Children of people with ASDs’, to find three sections, one of them is called ‘Spouses and Partners’. Click it to find resources and links about this topic.

126

Alone Together

Germany Autismus Deutschland e.V. Bundesverband zur Förderung von Menschen mit Autismus Bebelallee 141, 22297 Hamburg Tel +49 (0)40 511 56 04 Fax +49 (0)40 511 08 13 Email: [email protected] www.autismus.de

New Zealand Autism New Zealand – National Office PO Box 730, Sydenham, Christchurch Tel +64 3 332 1038 Fax +64 3 332 1024 Email: [email protected] www.autismnz.org.nz Click on ‘Branches’ and find local associations and their contact details.

Switzerland Autismus Deutsche Schweiz Fischerhöflirain 8, CH – 8854, Siebnen Tel + 41 (0) 55 440 60 25 Fax + 41 (0) 55 440 14 12 Email: [email protected] www.autismus.ch This website has a very informative section on AS. Click on ‘Asperger Syndrome’ to find topics such as: What is it?/Frequency/Therapy and Intervention/Typical Symptoms and a description of what people with AS need from their surroundings. Autismus Schweiz Elternverein Rue de Lausanne 91, CH – 1700, Fribourg Tel + 41 (0) 26 321 36 10 Fax + 41 (0) 26 321 36 15 Email: [email protected] www.autismusschweiz.ch

Useful Contacts and Further Reading

127

United Kingdom National Autistic Society 393 City Road, London EC1V 1NG Tel +44 (0) 2078 332 299 Fax +44 (0) 2078 339 666 Email: [email protected] www.nas.org.uk Click on ‘Getting help in your area’ to find out more about local branches, support groups and services. PARIS (Public Autism Resource and Information) Service PARIS Department, The National Autistic Society, Castle Heights, 72 Maid Marian Way, Nottingham NG1 6BJ Tel + 44 (0) 115 911 3360 Email: [email protected] www.info.autism.org.uk This website helps to find services for people with autism including AS across the UK.

United States Autism Society of America Autism Society of America, 7910 Woodmont Avenue, Suite 300, Bethesda, Maryland 20814–3067 Tel +1 301 657 0881 www.autism-society.org Hold the mouse over the different topics in the bar on the top of the page and find various links. If you hold it over ‘Resources’ you’ll see a section called local resources. Click on it and find a section on ‘Local Resources, Providers, Services and Support’. MAAP Services MAAP Services Inc. PO Box 524, Crown Point, IN 46307 Tel +1 219 662 1311 Fax +1 219 662 0638 Email: [email protected] www.maapservices.org

128

Alone Together

Click on ‘Resources near you’ and find professional and parent support in your area.

Further Reading Aston, M. (2003) Aspergers in Love: Couple Relationships and Family Affairs. London: Jessica Kingsley Publishers. Attwood, T. (1998) Asperger Syndrome: A Guide for Parents and Professionals. London: Jessica Kingsley Publishers. Attwood, T. (2006) The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley Publishers. Fleisher, M. (2005) Survival Strategies for People on the Autism Spectrum. London: Jessica Kingsley Publishers. Grandin, T. (2006) Thinking in Pictures. London: Bloomsbury. Hadcroft, W. (2004) The Feeling’s Unmutual: Growing Up with Asperger Syndrome (Undiagnosed). London: Jessica Kingsley Publishers. Hénault, I. (2005) Asperger’s Syndrome and Sexuality: From Adolescence through Adulthood. London: Jessica Kingsley Publishers. Jacobs, B. (2006) Loving Mr. Spock: Understanding an Aloof Lover – Could it be Asperger’s Syndrome? London: Jessica Kingsley Publishers. Lawson, W. (2003) Build Your Own Life: A Self-Help Guide For Individuals With Asperger Syndrome. London: Jessica Kingsley Publishers. Lawson, W. (2004) Sex, Sexuality and the Autism Spectrum. London: Jessica Kingsley Publishers. Lawson, W. (2006) Friendships: The Aspie Way. London: Jessica Kingsley Publishers. Murray, D. (2005) Coming Out Asperger: Diagnosis, Disclosure and Self-Confidence. London: Jessica Kingsley Publishers. Redfield, J. (1994) The Celestine Prophecy. Australia, Sydney: Bantam Books Rodman, K.E. (2003) Asperger’s Syndrome and Adults… Is Anyone Listening? Essays and Poems by Spouses, Partners and Parents of Adults with Asperger’s Syndrome. London: Jessica Kingsley Publishers. Slater-Walker, G. and Slater-Walker, C. (2002) An Asperger Marriage. London: Jessica Kingsley Publishers. Stanford, A. (2002) Asperger Syndrome and Long-Term Relationships. London: Jessica Kingsley Publishers. Willey, L.H. (1999) Pretending to be Normal. London: Jessica Kingsley Publishers. Williams, D. (1998) Nobody Nowhere. London: Jessica Kingsley Publishers. Williams, D. (1998) Somebody Somewhere. London: Jessica Kingsley Publishers.