Product Info

Living with Asperger Syndrome by Dr Joan Gomez

Asperger syndrome, once obscure, is today a well known condition and is believed to affect more than 200,000 people in the UK. People affected have a quirk in the functioning of the brain and nervous system which results in social and communication problems. Unlike others on the autistic spectrum, those with Asperger syndrome often want to communicate, and to share their lives — they just don't know how.

This warm and inspiring book looks at how those with Asperger syndrome can be appreciated for what they are and for the unique gifts they may be able to offer, and thus lead fuller lives. Subjects covered include:

• historical background and statistics
• the family
• babies, toddlers, school-age children and teenagers
• related disorders
• coping and living
• great thinkers with Asperger-type characteristics, including Einstein

Contents

Contents

Abbreviations
Introduction

• The historical background
• The numbers game: statistics
• The family
• The first five years
• School-time
• The teenage years
• Co-existing conditions
• Options and interventions
• Medication
• Miracle cures
• Lifestyle
• Great thinkers with autistic characteristics

Further reading
Useful addresses
Appendix: Criteria for a definitive diagnosis of Asperger Syndrome
Index

Extra Info

Introduction

Ten years ago only a handful of experts in child psychiatry had even heard of Asperger Syndrome (abbreviated to AS). Today, though, the term is on everyone's lips and appears in a wide range of journals, from specialist medical and serious scientific publications to popular women's magazines. In 2003, Mark Haddon's entertaining novel, The Curious Incident of the Dog in the Night-time, written in 'Aspergerese', was shortlisted for the Booker Prize, then won the Whitbread Award in 2004. In the same year, Stephen Poliakoff' s play received the ultimate accolade of a showing on BBC 2. The hero was Prince John, the youngest child of George V, kept under wraps all his life because of his epilepsy and what we would today consider to be AS.

What is Asperger Syndrome (AS)?
The condition arises from a quirk in the development of the brain and nervous system, and results in lifelong problems in communication with others, especially in social situations, and in forming relationships. Youngsters with AS are fascinated by particular objects, even their own fingers. Both in childhood and as adults, they harbour an intense interest in subjects that are usually too complex or too academic to appeal to ordinary, normal people — or, to use the term employed throughout this book, neurotypicals. Albert Einstein and Isaac Newton, both with retrospective diagnoses of AS, show this single-minded obsession with particular subjects — in their cases, gravity, matter and space.

High intelligence shines out from those with AS more often than in the general population, but it is counterbalanced by a group who have learning difficulties. Among brilliant people today who show features of the syndrome are Bill Gates, the boss of Microsoft, and Dr Temple Grandin, a woman who has done much pioneering research into AS.

Pervasive Developmental Disorders (PDD) encompass a group of around half a dozen developmental abnormalities affecting the brain and nervous system. AS is a very special member of a family of related symptoms known as Autistic Spectrum Disorder (ASD), which is used as a general term for autism. ASD in turn comes under the umbrella label of PDD.

What is the difference between ASD and AS?
ASD is an expansion of the word 'autism', with the phrase being an umbrella term for autism in general. This is characterized by symptoms that appear before the age of three, and usually by 30 months. Typically, the baby, usually a boy, is particularly 'good' and quiet. He does not respond to cuddles, smiles or being spoken to, and seems not to differentiate between his mother and a stranger. He is slow in learning to talk and seems to be more interested in things than in people. General problems with eating, sleeping and temper tantrums may crop up, and are often more intense than in neurotypical children.

Asperger Syndrome (AS) is a specific type of ASD. It shows some similarities to autism, but manifests itself later, sometimes not appearing fully until puberty — or it may not be recognized at all until then. There is usually little or no delay in talking, but a child with AS is poor in the use of body language, eye contact and facial expression. He seems to prefer his own company to joining in and playing with other children. Other oddities are an inflexible insistence on certain routines and an overwhelming desire for sameness in everything. The AS triad of impairments affects social behaviour, communication and imagination.

Behind every diagnosis of AS lies a puzzling story of negative tests and positive symptoms, and a family history of unusual personalities, especially in fathers, brothers and sisters. It can be a privilege and a pleasure to have an AS child to care for and help in simple physical ways, and to protect in a world that does not understand him, and vice versa. Such a child is likely to be bright, but uses his intelligence along different lines, and feels affection from a different viewpoint from a neurotypical youngster. This viewpoint can help us in our general understanding of humanity.

Children with extreme forms of PDD (for instance Rett's disorder, Childhood Disintegrative Disorder (CDD) or Fragile X syndrome), or with serious learning difficulties or severe autism, are easily recognized by teachers and classmates as being different from other children, but of course AS children are not responsible for this. Youngsters with AS have a much worse time than their peers, and are subject to bullying at school, because they are seen as psychologically normal but awkward and unfriendly.

There has been a dramatic and continuous increase in the number of recognized cases of ASD, especially since AS has aroused such intense interest. The number of children with ASD now outstrips that for Down's syndrome, and also cerebral palsy. Even the staid British Medical Journal currently refers to autism as an 'epidemic'. In places as far apart culturally and geographically as Saudi Arabia, Quebec and Cambridgeshire in England, the frequency of the AS variant of ASD is escalating — a further reason for its claiming so much attention.

Autism (ASD) and AS: two typical cases
Peter
Peter was a beautiful baby. After a trouble-free pregnancy, Helen, his mother, thought she was the luckiest woman in the world when she looked at his perfect, symmetrical features, with neither the wizened old-man look of some babies, nor the immature, chubby, babyish face. And he was so good too: seldom crying and taking his feeds without a murmur. Everyone said 'like father, like son', for Philip, his father, had always been the quiet, shy type. In fact, Helen looked forward to her husband coming out of his shell to play with Peter like other dads — delicious games such as 'This little piggy went to market' and 'Incy, wincy spider'.

However, this never quite happened, but Helen hugged her baby a lot to make up for it. Oddly, he felt awkward in her arms, as though he didn't fit. When she gazed lovingly at his face and tried to look into his eyes, she found they somehow always avoided hers. Her son's lack of response puzzled her and hurt her feelings, but she told herself to thank her lucky stars for the quiet nights. Peter's sight and hearing were checked and found to be normal, but he hadn't yet begun to babble or play baby games with Helen. He seemed so alone.

It was the paediatrician, several months later, who first suggested that Peter was autistic.

Rosemary
Rosemary's parents, like Peter's, were professional people. Her father was a lawyer, her mother a maths teacher. At the age of seven, Rosemary was considered 'a bad mixer'. She did not join in with the others at school and never wanted to bring any friends home to tea. Her parents were not worried, though, because as far as her schoolwork was concerned, she was well up to average — and well above it for arithmetic. English was her worst subject; she was particularly fazed by poetry 'because it says things that aren't true'.

Rosemary disliked team games, partly because she was no good at them as a result of poor co-ordination, and partly because she preferred doing things on her own. The outcome of this was that she was always the last one to be chosen when they were picking sides. This made her sad because she wanted to be popular. As she was unable to put herself in another person's place, she did not realize that she was always upsetting or annoying the other children — for instance, by saying that netball was boring, or by sulking when her team lost.

It was not as bad for Rosemary as it would have been for a boy, because she did not stand out as being very different from other girls. A couple of neurotypical girls in her class also 'hated games', so Rosemary did not seem abnormal. The snag, though, was that she did not join in girly activities either: cosy chats, giggling about boys, buying new clothes, or playing nurses.

Thinking she was helping Rosemary over a mental barrier once and for all, an enthusiastic, pro-active but inexperienced teacher tried to shame her into taking an active part and shooting at netball. Rosemary, usually so self-effacing and passive, hit the woman as hard as she could — to stop her. This ended Rosemary's stay at that school, but it did lead to the priceless gain of her having investigations that ultimately led to a diagnosis of AS — and at last gaining some sympathy for her problems and help in dealing with them.

Portrayals of autism and AS
The actor Dustin Hoffman won an Oscar for his portrayal of autism in the film Rain Man, and — as we have already mentioned — Mark Haddon, the writer, received the Whitbread Award for his brilliant depiction of a boy with AS. These two artists have done a great deal to help us to understand AS, in the way that they make us feel for, and almost love, their realistic fictional characters. While retaining their own neurotypical mentalities, Hoffman and Haddon have managed to enter into their subjects' minds.

There are two particular books that have been written by children who themselves have Asperger Syndrome: Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence by Luke Jackson, who was 13 when he wrote this, and Asperger Syndrome, the Universe and Everything, by Kenneth Hall, who was ten when he wrote his account. These books are wonderful achievements and give further insights into what it is like to be an 'Aspie'.

Mothers who have written about their AS children — for instance, Charlotte Moore and Brenda Boyd — give amusing, informative and sometimes daunting accounts of the impact that a child with AS has on family life. It would be marvelous if a father could be persuaded to write a book about AS, particularly as the affected children are nearly all boys, and their personalities veer towards the masculine. For instance, the specialist subjects that those with AS choose most frequently are those that neurotypical men and boys go for anyway: maths, engineering and the sciences, rather than the more imaginative subjects of history and literature. Male researchers into AS, such as Tony Attwood, and the giants of earlier days, Kanner and Asperger himself, wrote from a male standpoint, but do not have a parent—child bond of understanding.

About the author
Joan Gomez is Honorary Consulting Psychiatrist to the Chelsea and Westminster Hospital and an established Sheldon author. Previous books include Coping with Thyroid Problems (1994), Living with Diabetes (1995) and Coping with Incontinence (2003). She lives in Farnham, Surrey.