Ways out of autism
Raun Kaufman is the American dream personified. A fit and well 26-year-old with a degree in biomedical ethics from an Ivy League university, he has a great job in leafy Massachussetts and is articulate, personable and confident.
But this dream began as a nightmare. For the first five years of his life, he was locked in a world of his own, never responding to cuddles, incapable of making eye contact. When he was 18 months old, his parents were told by specialists that he was severely autistic and should be institutionalised. The most optimistic prospect they could offer was that one day, Raun might be able to dress himself. Barry, an advertising executive and Samahria, a sculptor, refused to accept this verdict. Instead of giving up on their silent, endlessly rocking son, they set about devising an intensive programme for him in a bid to get him to connect with the world outside his head. Twelve hours a day, seven days a week for three years they gave themselves totally to him, shelving their paid work to devote all their energy to luring Raun out of his shell.
They made things up as they went along, driven by the instinctive belief that if they joined in with Raun's behaviour, he would be drawn into interacting with them. So when he rocked back and forth, they rocked with him. When he spun plates, so would they.
They devised a learning regime, too. It started with basics, like how to establish eye contact, then moved on to more traditional cognitive skills, all totally child centred.
At the age of five, the boy was, according to his parents, "cured" of his autism. He entered mainstream kindergarten and from then on has been "normal", a word Raun uses often. "I never suffered any stigma. I made friends very easily and did real well in school. And today, on the one hand I live a very normal life and in another way, my past has completely affected what I do and the way I think."
What he does and thinks is focused on The Option Institute, set up by his parents in 1983 as a base for the Son-Rise Program, the name they gave to the regime that they developed, and where their son now works as teacher and spokesman. The Institute trains thousands of parents and professionals in the theory and practice of Son-Rise, and claims positive results for the overwhelming majority. Some, according to Raun, have shed their autism completely and, like him, have become "normal".
And in this lies the most controversial aspect of Son-Rise. "We don't believe that autism is a lifelong condition," he says. "We believe that what a child has done in the past has no bearing on what they'll do tomorrow. A lot of people warn against giving people false hope. But I've never heard anyone voicing concerns about false pessimism. I don't think there's anything dangerous about parents hoping."
But hoping that autistic children will overcome obstacles to lead more fulfilled lives is one thing. Hoping for a cure is quite another. Autism is defined by the professional establishment and by organisations such as the National Autistic Society UK as a lifelong developmental disability that affects the way a person communicates and relates to people around them. But there is still much that remains unknown about autism, including its causes. One problem is that it is so individualised that generalisations are difficult. There is a wide range of what are known as autistic spectrum disorders, ranging from high functioning people with average or above average IQs who have Asperger's Syndrome, to those who are withdrawn and may have low IQs, known as classic autism. Even so, every autistic person (of which there are an estimated 91 in every 10,000 in the UK) will to some extent have a triad of impairments:
* problems with social interaction - awkwardness in social relationships, appearing aloof and or indifferent to other people;
* problems with social communication - difficulty in understanding both verbal communication and non-verbal, such as nuances, gestures, humour, tone of voice;
* problems with imagination - affecting their ability to play, and producing actions that are performed rigidly and repetitively, like Raun Kaufman's ritualised rocking. There are also difficulties in thinking in abstract, so that things are taken literally.
Despite these complex difficulties, Raun Kaufman isn't alone in having been turned around. Sheila Coates, who has taught children with autism for 27 years and runs the Service and Resource Units for autistic children in Oxfordshire, says: "I've had kids who were profoundly autistic and disturbed but very bright and who, at adolescence, got their act together and have gone on to conquer their disabilities. One is doing a law degree at the moment, another has a PhD in maths. But every case is different." Because of this, her units draw on a combination of therapeutic and teaching approaches.
If there is one point about autism that everyone working in the field agrees with, it is that the earlier the intervention, the easier it is to reverse the effects of autism. Sheila Coates says: "You can stimulate and reconnect the brain more easily when the child is younger and more malleable. By the time they reach the age of five, things are established. A year is a lifetime when you're three and autistic."
Diane Kitchen was determined to get an early diagnosis for her son Michael, now 12. "He was out of control and would attack me and acted out ritualised behaviour. I was desperate and wouldn't be fobbed off by doctors who didn't want to put a label on so young a child because they said he could change. Getting a diagnosis early was the most important thing, and I succeeded when he was two."
She had heard about Sheila Coates' work and got involved in one of her "holding groups" in Oxfordshire, a controversial method in which a parent holds their child for a prolonged period. It's not as easy or pleasant as it sounds, as Diane Kitchen explains. "The autistic child doesn't want to be held and struggles against it, but you have to and insist on it, saying it's okay, even when they scream and fight. It can take two or three hours until you reach resolution." The theory is that the autistic child wants to be reached but can't express it, so the parent has to go and drag them out of themselves. It has drawn criticism because of its intrusiveness and insistence that the child comes out of their world and into the parents'.
But Diane Kitchen says it made a huge difference to Michael's life, too. Today, he is in Year 8 at a comprehensive in Thame, Oxfordshire. He's an articulate lad with a lively intelligence, a whizz at maths, but struggling with English because of his limited imagination. He continues to attend an autism unit based at the school for one session a day and has one-to-one support 50 per cent of the time that he spends in ordinary classes.
His articulacy belies the other difficulties that he still has. "Because he looks and acts like anyone else his age I actually forget sometimes that he's different," says his mother. "But then he'll do something, like a few days ago he asked me 'what does lavatory mean?' And until quite recently, he believed Father Christmas was a real man. He's so vulnerable yet every day he goes out into the world pretending he's normal. He's like a computer: I have to programme him for every skill, every possible scenario. He'll ask: 'what do I say if someone says this or that to me?'" It is relationships that are most difficult for Michael. Because he can't read expressions and tones of voice, he's had difficulties making friends until recently. His social awkwardness and flashes of temper have made him the target of bullies. "But he's got amazing self-control and has learned not to show his anger," says Diane.
When I talk to Michael on the phone, he's disarmingly honest. "I prefer to be in the regular class at school," he says, "because people might think I'm normal. I don't like telling people I'm autistic because I'm afraid they won't like me. In the regular classes, it's hard to cope because of the size. It's definitely not easy to be with other kids. I get teased about 65 per cent of the time. When I get bullied I sometimes keep it secret but sometimes I tell the teacher. Sometimes I feel some of the teachers blame me, but usually they like me and think I'm very clever." I ask what he wants to do when he leaves secondary school. There's not a moment's hesitation. "There are a lot of things I want to do when I leave school. I might try to get a degree in French or to work in a pet home. I might even try to get a Master's."
For Diane and Michael, the nightmare is over, thanks to a combination of early intervention, love, hope, appropriate support at school and Michael's will to "be normal". "I've never searched for cures for Michael," says Diane Kitchen. "Just for ways to give him a good life."
For more help and information ring the National Autistic Society on 0171 833 2299 or look at its website: www.oneworld.orgautism_ukAutism 99, the worldwide disability conference co-sponsored by the NAS and The Shirley Foundation, takes place exclusively on the Internet on November 2-23. www.autism99.org.