In a new approach to autism, the child leads his parents. Christine Doyle investigates Son-Rise
As Raun Kaufman, 26, chats fluently about his academic achievements - he was a high-school high-flyer and has a degree in biomedical ethics from an Ivy League American university - it scarcely seems credible that, at 18 months old, he was diagnosed as profoundly autistic.
"My parents were told they would eventually have to put me in an institution," he says. "I had classic autistic symptoms - as if I had been dropped from another planet. In effect, I was mute - with no coherent words, only bizarre noises.
"I never looked anyone in the eye. I rocked back and forth, often walked on tiptoe and was always spinning plates. I cried incessantly. When I was almost two, they were told I functioned like an eight-month-old."
But, while doctors seemed to write him off, his parents refused to accept that prognosis.
"They wanted more than words such as 'what a tragedy; we are so sorry'," says Raun. "So, they logged all my behaviour, and tried to see what sense they might make of it and how they might help me. At the same time, they vowed to accept me completely as a person, whatever the outcome. They never became aggravated at my bizarre repetitive movements - they called them 'isms' - and regarded them as my soothing escape from over-sensitivity."
Early on, his mother, Samahria, decided intuitively to "join" Raun in his remote world. "Instead of trying to jolly me along or reform my odd behaviour, she sat down on the floor and rocked alongside me, trying to feel as I did. When I spun plates - I was very good at it - or twirled around, so did she. She followed every movement. She fixed her gaze on a spot on the wall, as I did, as she rocked, and felt she was meditating."
For the first time, Samahria felt she was in communication with her son. As she spun a plate one day, Raun suddenly looked at her, making direct eye contact. He had never done this before and his parents realised it was a decisive moment.
Unwittingly, their son had constructed some sort of bridge to them. They could use this, they realised, to encourage language and learning. This was how the controversial Son-Rise programme to treat autistic children began; eventually, it led to them setting up the Option Institute in Massachusetts.
Some British parents have travelled to America to learn the techniques. However, because this is expensive, the programme is gradually being introduced in this country. This week, parents who attended a five-day "start-up" course in London six months ago are following it up with a second, five-day, "maximum impact" course, during which Raun is leading some of the sessions.
One guiding principle is to experiment with different ways of living, so that everyone in the family is happy. Raun believes he was lucky. "Before I was born, my father, Barry, was influenced by one of his college professors, who taught the philosophical idea that happiness is a choice everyone can make. My parents tried to live by that belief, rather than continually saying 'why did we have an autistic son'?"
In the programme, the child, not the adult, is the teacher. "This is why we make so much of joining in a child's activities, often for hours a day," says Raun. "The child sets the pace and, sometimes, progress is surprisingly rapid."
This is the most controversial aspect of the method. Other techniques, such as the Lovaas intensive educational system, rely on a traditional, structured approach.
Option would never condemn another therapy and the National Autistic Association, while not endorsing the technique, points out that what suits one child might not be right for another. Raun agrees, but adds: "We have seen nothing to match 'joining in' for speeding up language while also making the child feel peaceful and happy."
Parents often want their autistic child to go to a mainstream nursery or primary school or a special needs unit - though such options might not be best. "School can be full of distractions, which might distress the child and make them feel aggressive rather than secure. Even television and videos are distracting. Parents can be the best resource."
Hence, the need for the Son-Rise "special room" for play and learning, which is explained to parents during the start-up course. Ideally, this should be decorated in plain or neutral colours with a vinyl covering over the carpet. There should be some large bouncy balls and other toys should be kept on high shelves, so the child has to ask for them. The window should be "whited out" and the door should have a two-way mirror panel so that behaviour can be observed.
The room is a safe place, says Raun. "No one ever says 'no' or 'don't'. The reason for blanking out the window is to focus everything on human interaction."
Parents are encouraged not to become obsessive. "If they want to try to join with and teach their child 10 hours a day, that is fine. If they can manage only one hour, that is fine, too."
Once Sahmaria gained Raun's trust, she would smile and applaud outrageously at every new word or specific request. In his book about the programme, Barry, who was once a Hollywood advertising executive, describes his wife's "hysterical, circus-like routine" to keep her son interested.
She blew bubbles, painted her face and played musical instruments. Together, she and her husband developed shorthand words to stimulate speech - such as "ju" for juice and "wa" for water - and devised ways to spur Raun to ask for what he wanted rather than take their hands and stand by the fridge. Sometimes, he cried himself to sleep before he could say what he wanted.
"But, I made progress," Raun says. "I learnt that my parents reacted slowly when I cried; they were not punishing me. Sometimes, I made sudden dramatic leaps in development; but then, just as unpredictably, I fell behind. Once, just as I was on the verge of speaking normally, I had a major reversal; my parents were convinced I had retreated for ever. But, they did not give up - they just started again. It took many months, but the breakthrough happened and, after that, I never looked back."
Having been given an IQ of 30 when he was diagnosed, Raun went on to become a straight A student. There are so many theories for the cause of the disorder - from allergy and a faulty immune system to a genetic susceptibility affecting brain pathways - that Raun cannot explain his recovery. "Perhaps the intensive therapy helped to knit together or recondition disordered pathways in the brain. Perhaps other parts of my brain took over from damaged ones."
Option cannot cite studies to give a global measure of cure or improvement. "We would like to carry out follow-up studies. But these are early days; most of the children in the programme are still young.
"We never talk of cure; we don't want to give false hope. With time, we know that some can go to mainstream schools. What we can say is that every parent who takes part in the programme and reports back says change for the better has occurred."