Autism unwrapped

4th April 2008, 1:00am

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Autism unwrapped

https://www.tes.com/magazine/archive/autism-unwrapped

Being autistic doesn’t have to hold you back, the author of a bold new book tells Sarah Fletcher

Kamran Nazeer was diagnosed with autism at the age of 4. As a child, he was socially withdrawn and barely spoke - more than 20 years on, he’s a Cambridge graduate and works in Whitehall as a government legal adviser.

This week he published his touching account of autism, Send in the Idiots, to coincide with Autism Awareness Day (April 2). It traces the lives of four of his former classmates at a New York special school, from a depressed suicide victim to a messenger who gets upset if anyone touches his bicycle.

The National Autistic Society defines autism as a lifelong disability. But the 30-year-old civil servant disagrees. “It is hard for me to say now that my autism is a disability. And I don’t want to say that either.”

So what does his experience reveal about autism, and what can he teach others about the education and treatment of autistic children? Can autism be overcome? Or can it, through appropriate education and treatment, be managed so that the individual adapts to cope with their environment?

Kamran went to a private school for autistic children in New York in the Eighties, which has since closed. When he met Rebecca, his former teacher, in 2003, she told him: “You’re not autistic”.

Her comments made him think about what autism means. “Sure, I had a diagnosis of autism from when I was a child, but did it disable me more than 20 years later? I think she was saying that it did not, and that’s why I didn’t count myself as being autistic any more. Either that or as a form of self-description it wasn’t useful to me any longer.”

However, he believes that autism is something that defines who you are. “It shapes how you approach the world and how people approach you,” he says.

An autistic person will always be autistic, but how it affects them - and how they define their autism - depends on how well they adapt to their circumstances.

“For me, the defining characteristic of autism is the need to find local coherence,” says Kamran. “An order, a routine, a rhythm that insulates you from the rest of the world. This is why social interaction can be so difficult for autistic people. It disturbs the order that they need for themselves.”

Kamran has developed coping strategies to make his condition almost imperceptible, so that it doesn’t affect his career. “It is little tricks, such as keeping a clip in my pocket or running a finger along the edge of something when I feel anxious. They’re hardly noticeable, I think, but then other people do notice them and when they are particularly daring, they ask me about it,” he says.

He doesn’t seem distressed by this - a far cry from the socially isolated child who barely spoke to other children.

Autism affects people to different degrees, from quite mild autism that can seem like social awkwardness, to Dustin Hoffman’s character in Rain Man. Kamran’s account explores whether autistic children can grow up to integrate into mainstream society, wherever they are on the autistic spectrum.

In Send in the Idiots, Kamran tracks down four former classmates - Kwame, Elizabeth, Craig and Andre - to discover how they have dealt with their autism over the 20 years since leaving school. They have dealt with their condition in very different ways.

Kwame, now a computer engineer, communicates through homemade puppets when faced with difficult social or emotional situations. Kamran presents this in a sensitive and gentle way, even the incident where Kwame is turned away from a dating agency for bringing his puppet along.

Andre is now a computer researcher and Craig became a speech writer for the Democrats. Elizabeth, who Kamran describes as being at the “harsher end of the spectrum”, is not so fortunate. She committed suicide in 2002, leaving no note.

Despite this, talking to his former classmates has made him optimistic about the prospects of autistic people. “Of course there are profound difficulties in their lives, but they have found imaginative and creative ways to overcome them,” he says.

Kamran’s progress is impressive. He has a law degree from Cambridge and has formed a career as a civil servant. He believes that his success is largely a result of being diagnosed as autistic at an early age.

“The diagnosis helped me to access the right help. It gave me a way to describe as I was growing up what was different about me. That was enormously useful,” he says.

The diagnosis also meant that he was sent to a school for children with autism. The experience, he says, was intensive. Classes often lasted more than 30 hours per week and involved “intensive language work and what an external observer might even call conditioning”.

The school aimed to build its pupils’ abilities to interact socially with other children by making them shake hands with each other every morning and play games together. This was quite an ordeal for Kamran, who found other children “a bit of a mystery, and not a mystery that I was desperately keen to solve”.

When he was 8, his parents moved him to a mainstream school in Saudi Arabia, which he attended part-time, spending the other half of the day doing one-to-one work with a child psychologist.

“However, it worked,” he says. “And what made the mainstream school a positive experience in the end was the other children. They were much kinder to me than you might expect and curious about why I was different from them.”

Despite his own positive experiences of mainstream education, Kamran isn’t convinced this is necessarily the best option for other autistic children.

“Different children have different needs. What works for one may not work for another,” he says. “The key is to have decision-making processes in place that are able to take account of individual circumstances.”

Nor is the Government primarily responsible for improving the treatment of autistic children in schools, says Kamran.

“Autism awareness is something that a much wider range of people have a role in promoting. And it is through awareness that the treatment of autistic children, both by schools and by their peers, will improve.”

Send in the Idiots is published by Bloomsbury, pound;7.99. Kamran is a trustee for Treehouse, the national charity for autism education.

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