Raun Kaufman said he once lived in the world of autism.
“No language, no eye contact, no social communication — I seemed like the only person alive in my world. I was not aware of other people, even my parents.” Now 35, Kaufman is CEO of the Massachusetts-based Autism Treatment Center of America, and a nationally known speaker about autism.
The disorder, once considered rare, now occurs in an estimated one in 150 U.S. children. Autism is a developmental disorder that has a spectrum of symptoms from mild to incapacitating. No general cause or cure can be pinpointed although intensive studies are under way, nationwide. In 2000, Congressional legislation authorized the National Institutes of Health to establish centers of excellence for research on autism, but none is in Virginia.
Autism impairs the ability to communicate with or interact with others. In 2006, more than 6,700 Virginia school children had an autism diagnosis, including 163 in Central Virginia.
Kaufman will talk about his experiences in a free community program at 7:30 p.m. Monday at Lynchburg College’s Sydnor Performance Hall. The Rimland Center for Integrative Medicine in Lynchburg, a specialty pediatric practice, is a co-sponsor.
As a child, “I was diagnosed as a severe case. I would spend my days in repetitive behavior,” said Kaufman in a phone interview this week. His parents, Neil and Samahria, were told that his was lifelong autism and that he had an IQ of less than 30. Instead of listening to the doomsday diagnosis, Kaufman’s parents developed a method to help him. “What they saw, … and we still see, is that autism is a social relational disorder,” said Kaufman.
So, instead of trying to correct autism as misbehavior needing force “to conform me to a world I didn’t understand, they started by joining my world first.” When he was sitting on the floor spinning plates, said Kaufman, they would join in, even though the experts were telling them it would just reinforce his autistic behaviors. Instead, “this was the first time I started looking at them and including them in my play. It created the relationship and connection and opened the door to teach.”
Kaufman remembers bits and pieces of that time, like the playroom his parents set up for him, and having fun with them. He also remembers aberrations in his vision, like looking out of the wrong end of a telescope. Kaufman believes that, for the autistic child, repetitive behaviors can offer some predictability in a world that seems to them “incredibly unpredictable.”
Autistic children can have severely disordered sensory input, and the world can seem to bombard them with information. “Every day is like being in the center of an airport,” said Kaufman. As for Kaufman, by the time he was in first grade, his steady progress meant, “I was a typical kid.” An excellent student, he went on to graduate from Brown University with a degree in biomedical ethics.
Today, with ATCA (founded by his parents in 1983) and its Son-Rise Program, he travels internationally to work with children and enroll parents in training. Autism has physiological, biological and neurological components, he said. The cause of autism isn’t his focus. “We start where the child is.”
Many autistic children are highly sensitive to foods, and have very high levels of stress hormones, which have implications for the immune system and for biomedical intervention, as well, he said. And with treatment “we have not seen anything that equals the power of the parent.”
In January, ATCA announced collaborative scientific research at Northwestern University in Chicago and at Lancaster University in England. Investigators will look at current Son-Rise treatments, evaluate ongoing treatment and past results. Kaufman said the ATCA initiated the studies to get data and numbers on how to be most helpful to parents. “We have thousands of different experiences, but that is considered anecdotal evidence,” he said. He’s familiar with critics who say he wasn’t really autistic as a child and that’s why he was able to recover. Kaufman said he was diagnosed by a number of doctors and facilities, and that his diagnosis was severe autism, not borderline, and he recovered. “I was the first child. I’m not the only child,” he said.
It is suspicious, said Kaufman, that when any autistic child recovers, people say it was a false diagnosis and the child wasn’t really autistic.“It is disrespectful to the parents and children, who cross the immense barriers,” said Kaufman. “We’ve worked with thousands of children, many recovered, and many did not recover.” He said he had a friend diagnosed with cancer, who underwent chemotherapy and radiation and recovered from a potentially fatal cancer. “No one said she must have been misdiagnosed.” Yet, he said, people will take a 5-year-old “and write him off for the rest of his life, because of autism … I’m trying to combat that.”
In Virginia, the rate of autism is increasing at between 10 and 17 percent a year, said John Toscano, president of Commonwealth Autism Service, a nonprofit organization supported in part by state funding. Concern about services for autistic children is also rising.Right now, services vary by the child’s age and where the child lives in the state, said Toscano. “Impoverished areas and those with lots of geographic challenges, access to services is pretty poor.” Pre-school programs are under-funded, he said. Schools are responsible for school-age children.“Post-school is really where the issues come,” said Toscano.
Right now, Virginia has no single agency responsible for providing services across the lifespan to people with autism, he said. Toscano said that Commonwealth Autism Service gets more than 1,000 calls a year from people looking for information about autism. CAS can give information about best practices, but decisions about which might work for any given child rests with the parents.
The organization has an information and referral program, and can be contacted at (800) 649-8481.