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eJOURNAL OF THE INTERNATIONAL CHILD AND YOUTH CARE NETWORK (CYC-Net) ISSN 1605-7406

ISSUE 11 DECEMBER 1999   CONTENTS   HOME PAGE

SPECIAL NEEDS

Successes with autism

Looking at Ruan Kaufman it is impossible to believe that when he was barely two years old he was diagnosed as profoundly autistic. 

The articulate 26-year-old American bears no traces of the mysterious condition that robs children of perception and traps them in their own world. But nearly a 25 years earlier doctors had advised the parents of the curly haired toddler to institutionalise their only son. His condition, they said, was irreversible. 

"The diagnosis and the prognosis was the same across the board from different people. I was diagnosed as profoundly autistic and severely retarded. They actually gave me an IQ test and I tested below 30," Kaufman said during a visit to London this month. 

Affable, polite and with a degree from an Ivy League university, one would never guess he had spent his early years in endless hours of repetitive behaviour. It was his parents' refusal to accept his condition as a tragedy and their dogged determination to reach the child trapped in his own private world which Kaufman claims led to his amazing recovery. 

According to Kaufman, his parents never set out to cure him. The most they had hoped for was to draw him out of his world and into theirs. "Children with autism and other special needs are doing what they are doing to take care of themselves, what makes the most sense. They decided to come at it from that point of view before they knew what they were going to do," he said. Like many children with autistic spectrum disorder, Kaufman was not affectionate and would not make eye contact with people. The moment he looked directly at his mother while she was rocking on the floor with him was the groundbreaking step that led to his recovery and the establishment of the Son Rise program for treating autistic children. "One of the main tenets of our programme is that parents are the main resource for their children but also that the child is the teacher, Kaufman said.

Barry Nell Kaufman documented his son's recovery in a best-selling book which was made into a TV film. The central pillar of the Son Rise program and The Option Institute in Massachusetts set up by Kaufman's parents to teach it is human interaction. Widely used in the United States, the Son Rise way is gaining popularity in Europe and elsewhere. 

Kaufman was in London to help train parents in Britain using the programme. The cause of autism spectrum disorder, which covers a range of disabilities, is still unknown. Research suggesting a link to the measles, mumps and rubella (MMR) vaccine and bowel disease has been disputed. A genetic component is likely. The condition, which was not recognised until 1943, is more prevalent among boys than girls. A minority of people with the disorder, who are known as autistic savants, show remarkable artistic, musical or mathematical skills, like the Dustin Hoffman character in the award-winning film Rain Man. 

Joining in
In the Son Rise Program, parents join the child in repetitive behaviour and are encouraged to appreciate any attempt at interaction the child makes. A safe room devoid of clutter is used to allow the child and parent to learn together without any distractions. "We use a child's own motivation as our doorway in. We use what they want to do, not our own agenda," said Kaufman. "It's really joining in with what the child is doing. Once we have established this bond through joining, then we seek to educate and help the child cross over the bridge into our world." Kaufman is reluctant to say he is cured, even though by the age of five he showed no visible traces of being autistic. 

Reaction from medical experts has ranged from accepting to unbelieving. "I've literally had parents come up to me and tell me they couldn't believe they were meeting me because they had been told by their professionals that I was in an institution," he said. Professional reluctance to fully embrace the programme is due, at least in part, to the lack of internationally accepted clinical trials supporting its success. "Inevitably the scientific world looks for hard data on these sorts of approaches and ideas and presentations, particularly long-term studies," said Mike Collins, the education advisor of Britain's National Autistic Society. Despite the lack of scientific evidence, Rita Jordan, a senior lecturer on autism at the University of Birmingham,who has completed a review of data on educational approaches for the disorder; thinks the Son Rise Program is useful and positive. "Many things in its rationale fit very well with what we know about autism. In terms of the rationale on which it is based I think it is a sound programme."

Shara Ouston, a 33-year-old mother of four from the Isle of Wight off England's southern coast, has no doubts about its benefits. Both her sons are autistic. Jack, 9, completed the Son Rise program a few years ago and Toby, 4, is about halfway through it. Both have improved immensely. "Both my children were fairly high functioning to start with but all children are different. Sometimes you get really miraculous things happening with lower functioning kids," she said. Son Rise is just one of many treatments for autism. Ouston acknowledges Son Rise may not be right for every autistic child but she has no hesitations in recommending it.

"I know from my experience that it works," she said. "How it works I don't know. I think it has to do with love. Love creates miracles and is healing at the end of the day."  

Acknowledgements: Reuter