Autism from the inside

Memoir: At the age of four - still not speaking - Kamran Nazeer was enrolled in a special class in one of the few New York schools…

Memoir: At the age of four - still not speaking - Kamran Nazeer was enrolled in a special class in one of the few New York schools offering a programme for autistic children.

Now in his late 20s, with degrees in law and philosophy, a PhD from Cambridge and a job as policy adviser in Whitehall, he wonders whether it is useful any longer to describe himself as autistic. Comparing himself to some of his classmates, four of whose profiles form the core of this book, he concludes that he had "fewer difficulties" and that "these were simpler to overcome".

Yet some autistic traits remain. Nazeer still prefers to avoid phone calls, anxious lest he miss nuances of tone or emphasis. A confident public speaker, it is one-to-one conversations, especially with strangers, that he finds most challenging. He boasts about his success, on the journey to attend college away from home in his mid-20s, in risking a casual conversation with a shop assistant. I was reminded of a young law student with high-functioning autism, who told me that what she most admired in her mother was her ability to have a conversation with a taxi-driver.

In 1982, when Nazeer joined more than a dozen other children diagnosed with autism to participate in an experimental programme, there was little public awareness of the condition. Medical expertise was lacking and many children remained undiagnosed. Like the parents of his classmates, Nazeer's father - a banker from Pakistan - was affluent enough to afford the fees both for the privately run school and for consultations with the few available specialists.

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At that time, the received view internationally was that autism was a very rare condition, affecting only four in 10,000 individuals, about 20 per cent of whom might be of average or above average intelligence, the remaining 80 per cent being, in the terminology then used, mentally handicapped. But in 1981, the year before Nazeer started school, the English psychiatrist, Lorna Wing, opened a Pandora's box. In a study called Asperger Syndrome: A Clinical Account, she drew attention to a hitherto undiagnosed group of people arguing that they were at the high-functioning end of an autistic spectrum. Twenty-five years later the received view is dramatically different. The number of people with what is now called "autistic spectrum disorder" has increased tenfold: four in every thousand are autistic, three-quarters of these being high-functioning, with boys outnumbering girls. A similar number have some, but not all, of the traits of this developmental disorder. If these figures are accurate, then one person in every 125 of the population is affected and autism can no longer be described as a rare condition.

The explosion in research studies, which formed part of this reappraisal, has been followed by the publication of a phenomenal range of books for lay readers. Nazeer dismisses many as "really bad memoirs": useful, perhaps, but "not good books". He thought he could do better. Publishers, alerted by the sales of more than 12 million copies of Mark Haddon's The Curious Incident of the Dog in the Night-Time - featuring a child detective with Asperger syndrome - were interested in Nazeer's proposal.

THE PLAN TO reconnect with his classmates after 20 years was made easier by the fact that his parents had kept contact details, but several of those he reached declined to be interviewed. Often it was their parents, with whom they still lived, who turned him down. The three who accepted were all employed and living away from home: Andre, a computer engineer; Craig, a speechwriter for the Democratic Party; and Randall, a cycle courier, who always rides a red bicycle and was living with his partner, Mike. We learn about Elizabeth, the only woman profiled, from her parents: probably the most "harshly affected", she had committed suicide in 2002. A chapter is devoted to each of them, with details changed to protect their privacy.

For the most part Nazeer stays as a visitor in the homes of his interviewees. Over the course of a few days we experience their lives in the company of a guide who knows the territory and does not interfere with, change or judge it. Part profile, part case-history, these portraits bring to mind the Seamus Heaney line, "Description is revelation". Nazeer's observations are detailed and detached but sympathetic. He is, after all, "an insider". When Craig, whose career path most closely resembles his own, is persuaded to make a return visit to stay with him in London, Nazeer can empathise with his difficulties.

It had suddenly struck me that Craig didn't want to go on trips and this meant that I should stop mentioning it. He didn't want to meet my friends and I should stop trying to make him. I was Craig's autistic ally. Perhaps we had developed to different points in the autism spectrum, but I didn't want to be so far from him that he needed to explain to me why he was worried about going to a party, or ask me whether it was OK to just order in a pizza.

At school Craig was echolalic - an autistic trait in which there is constant repetition of a disconnected word or phrase. It was his persistent refrain, "send in the idiots", that put an end to their teacher, Ms Russell's, much- enjoyed "newspaper reading" class. Her only chance in the day to read a paper

was ruined by a child who wouldn't understand why she was telling him off. So she never did . . . and the children wouldn't let her read on her own. So she just stopped entirely.

Ms Russell, whom we also meet 20 years later, knew when to accept defeat. And finally Craig's intrusive command has found a home as an inspired title for this book.

Nazeer was equally philosophical when, during his stay with Andre, he encountered an insistence that rules be followed. A computer engineer, Andre solves his communication difficulties by always carrying a puppet, which takes over at awkward moments. Nazeer has difficulty remembering Andre's rule that the puppet can never be interrupted. The first time he forgets this he finds himself pushed and locked into a darkened bathroom instead of going out to dinner. He repeats this mistake again when Andre is seeing him off at the airport. This time he is left without a boarding card and misses his flight.

While one hesitates to criticise an author who declares himself so sensitive that he is likely to tear up the criticised artefact, as the book is now out there I will take the risk. In each chapter, prompted by some characteristic or experience of his interviewee, the author diverts to philosophical reflections on topics such as the nature of politics, perceptions of genius, and the analysis of conversation. In some instances they seemed to be used to extend what might otherwise be shorter chapters. These dissertations would have benefited from some editing.

This was not the case in the poignant chapter where Elizabeth's parents describe their attempts to give their daughter an independent life, while recognising the fragile mental state that eventually caused her to swallow all her pills and pull the cover back off the swimming pool. Their courage prompts Nazeer to reflect on the influence his own parents had on his development. Finding themselves with a son who was "shy though bright and odd though not really freaky", they were enviably democratic, and in coping with his difficulties, they maintained "a constant state of inquiry".

It was a good state to be brought up in . . . my first experiences of talking were on topics of politics and culture around the dinner table - all absences had to be notified in advance. If they had pressed me to talk about feelings . . . I would only have disappointed them and that would have caused me to withdraw even more.

He was allowed to spend long evenings in his room alone, "free from the benevolent though intrusive knocks at the door and offers of cocoa". From the age of six,neither he nor his sister were given bedtimes and getting up for school was their own responsibility. One morning after breakfast, he announced that:

I was going into the back garden to read a book rather than leave for school. They didn't question me until the evening, and then all they checked was that I wasn't sick and wasn't being bullied.

This behaviour continued for three days: on the fourth day he picked up his satchel and got on the school bus and "they asked no questions about this change of heart either".

AT A RECENT conference organised by Mark Osteen - a professor and director of film studies at Loyola College, Baltimore - the consensus of opinion was that the vast majority of popular representations of autism are misrepresentations. Movies in particular tend to make the condition spectacular by emphasising the freakish or savant characteristics sometimes found in autism. In opposition to this concept one delegate suggested the term "normally autistic" to describe the reality for most people.

Nazeer echoes this when he notes that neither he nor his classmates have "magnificent IQs" and while they are at the end of the spectrum which makes it easier to progress to education, attainment and employment, they will disappoint those who expect them to exhibit special talents. But he has written probably the best book about what it can mean to be "normally autistic".

Send in the Idiots By Kamran Nazeer, Bloomsbury, 230pp. £12.99

Dr Eimer Philbin Bowman is a psychiatrist with a special interest in autistic spectrum disorders