Rising to the light

Raun’s parents Barry Neil (known as "Bears") and Samahria Kaufman devised their own intensive, home-based programme to help their son. They went on to found the Autism Treatment Centre of America in Sheffield, Massachusetts - now visited by families from across the world. Their programme, Son-Rise, is its bedrock. Raun is its director of global outreach and a living, breathing testament to its success. With autism increasing in western countries, but remaining little understood and difficult to treat, it is no surprise that increasing numbers of parents are asking whether this young man might hold the solution.

Raun was born in 1973, to the delight of his father, Bears, who worked in marketing for Hollywood movies, and mother Samahria, a sculptor and graduate of New York’s famous School for Performing Arts. But at about a year old, their healthy child seemed to change. He began to withdraw. He responded less to sounds, ignoring even loud noises, he became more solitary, he seemed to forget the few words that he had learned.

Soon he was living in his own world, exhibiting the classic repetitive behaviours associated with autism. He would spin plates on the floor, carefully, deliberately, for hours on end. He twirled on the spot but never became dizzy. The Kaufmans watched helplessly as their angel-faced, curly-haired child no longer seemed to recognise his parents or his two sisters, Bryn and Thea.

He was diagnosed with severe autism at 18 months old. One intelligence test said he had an IQ of less than 30. Bears and Samahria were told that their son was too young for treatment, and were warned not to expect much improvement. He would never be capable, one doctor told them, of meaningful communication.

Yet, just four years later, Raun started mainstream primary school, a bright child with lots of friends. All trace of the autism had gone.

Bears and Samahria developed the Son-Rise Programme through observing their son and trying to understand his world. They believe that autistic children are over-stimulated by the modern world. Unable to filter out the sights and sounds that most of us take for granted, they withdraw into the safety of their own world . The programme’s central idea is that the parent builds a bridge to the child’s world, then shows them the way out.

So, if Raun flapped his arms, the rest of the Kaufman family would join him. If he spun plates, so did they. After 11 days of spinning plates on the floor beside her son, Samahria noticed Raun look at her, a casual sidelong glance, the first time he had looked directly at anyone since the onset of the autism. Gradually, after much hard work, including the partial conversion of the family bathroom into a Son-Rise playroom, and they saw the developments which most parents take for granted: the first full eye contact, the first time he cried because he wanted a drink of juice, the first time he waved hello as his father came home from work.

Raun says he remembers only "little snapshots" of what his autism felt like. "The little memory I do have does involve things looking and sounding different to me. And having talked to other people with higher-functioning autism, they have told me that you see and hear things very differently. A soft sound can seem very loud to them, a loud sound very soft.

"I went on to have a lot of success and fun in school. I did well socially, I had a lot of friends." After graduating from high school, he went on to do a degree in biomedical ethics at the Ivy League Brown University in Providence, Rhode Island.

Perhaps the biggest thing Raun had to contend with while growing up was the fact that he was already a living legend. The Kaufmans published their story Son-Rise: The Miracle Continues, and in 1979 a TV movie was made about Raun, Son-Rise: The Miracle of Love. "Although I was a typical child in many ways, I had no illusions that my life was typical. I don’t think my friends were terribly impressed that I had recovered from autism, but they were impressed that there was a movie about me.

"Ever since I’ve been very little my autism has been a very open topic of conversation. My parents told me a lot of detail about what I was like, how they felt about it and dealt with it, and how they worked with me. I’ve always been really thankful for that. I never had a sense of embarrassment about it."

However, as a teenager, the idea of being a walking miracle started to pall. "I was very self-absorbed, like a lot of teenagers. I would still meet parents who would ask me, ‘Aren’t you so grateful to your parents?’ and I remember saying things like ‘Well, you know, no, I mean, I like my parents and all, but I don’t really care’. It wasn’t until I got into my 20s that I had a real depth of gratitude for the incredible work that my parents did with me."

It was that sense of gratitude which brought him back to work on the Son-Rise programme four years ago. "If you had asked me a year before if I was going to come back I would have said ‘No, that’s my parents’ thing, I’m living my own life’. But I had really been thinking about my parents, and I just wanted to give something back and help them out, so I agreed to come for just a year." He smiles. Then he forgot to leave.

In his present job, there’s no escaping his role as walking wonder. Every visitor to the centre wants to meet "the original Son-Rise child". "As a teenager I found that tiresome. Now I feel really honoured, if I am the vehicle by which the message really gets out about the Son-Rise programme. I know that when I travel around and meet parents they will say, ‘You’re Raun Kaufman, you’re the Son-Rise child’, that’s the first thing they notice about me. But I have plenty of friends who don’t care about that, so I’m OK with it."

He is in the unusual position of being a celebrity because he is a perfectly ordinary guy. When he says he likes Stephen King novels, or playing tennis, or his girlfriend scolds him to get home from work at a reasonable hour, hundreds of parents pin their hopes on that ordinariness. In the foreword to the 1993 edition of his father’s book, written while at university, he answers with typical warmth and humour the questions he most often gets asked: "Yeah, I’m an excellent driver; no, I only spin plates during really boring physics lectures; Sorry, I’m busy this Friday night."

He has been accused of offering parents false hope. Not all children who do the Son-Rise programme are cured of their autism completely like he was. There have been no scientific evaluations of the programme, and it is not known why it helps some children more than others.

He says that the philosophy is simply not to write anyone off. "All we really ask is for people to leave the door open, to have hope. But we’re not psychic, we can’t tell which child is going to turn out which way. But we are certainly not going to decide in advance what they are never going to do.

"Everyone I can think of who really seriously implements the programme has benefited in some way. That’s what I’m really excited about, not that we can create a whole bunch of Raun Kaufmans if everybody does Son-Rise."

He is aware that he could so easily have been written off as a hopeless case. "Yeah, I think about that a lot. I can’t take things for granted, because I could have had a life of living in an institution." He now looks on his parents, who both still work for Son-Rise with "a mixture of awe and gratitude". "It doesn’t mean they don’t bug me sometimes," he adds, laughing.

He is careful not to blame parents who accept the prognosis they are given about an autistic child. "I happened to have a set of parents who are very unique, also very headstrong, who decided that they were not going to believe what they were told. Not that they were in denial, they knew that I had severe autism, I was in my own world, and they didn’t know how I would turn out. But they didn’t believe there was nothing they could do."

"It’s quite ironic," he says laughing, "that if you look at the things that came easy for me when I had autism, the structure and routine, and the things that were difficult, things are totally reversed in my life and personality now. I have a really easy time engaging with people, public speaking, making friends, things like that. And the things I really stink at are sticking to the same schedule every day, organising - my desk is a complete mess." He breaks into a warm peal of laughter. "They did so much Son-Rise with me, I went too far the other way"

Raun Kaufman will be giving a lecture "Breakthrough Strategies for Autism and PPD" at George Square Theatre, University of Edinburgh, on Thursday 26 September, from 5-9pm. For more information and to reserve seats please e-mail [email protected], visit www.son-rise.org or call 001 413 229 2100. The Son-Rise Programme Start-Up course will run in London, 12-16 January.