Autism is a disease that often drives people apart. It separates children from parents, it isolates families from their friends. And it's left a chasm between parents of autistic children and mainstream medical science. Many parents feel betrayed by scientists who once blamed the disorder on bad parenting. And they feel abandoned by doctors who offer no cure and little hope.
A new autism research center in California, founded by fathers of autistic sons, is trying to bridge this chasm. As NPR's Jon Hamilton reports, its goal is to cure autism by changing the way scientific research is done.
When the University of California, Davis, MIND Institute opens its doors in April 2003, it will be the nation's largest autism-related treatment and research center under one roof.
Project manager Chuck Gardner is supervising the construction. For him, this job is personal. He's the father of a 10-year-old autistic son, Chas, and is one of the founders of the MIND Institute.
Since Chas was two, Gardner has dreamed of a sort of Manhattan Project for autism. He wanted to create a center that would cure the disorder -- quickly. And he wanted parents to be involved in running it. Gardner started by presenting his ideas to a roomful of scientists at U.C. Davis.
“They really weren't buying into this vision that I was trying to put out there,” Gardner says. The scientists told him he needed funding -- at least $5 million -- to make it happen. “I don't know if they told me that to make me go away, but I can tell you as the parent of a kid with autism, I wasn't discouraged at all. In fact I was encouraged because I knew that $5 million would not stand between me and getting to know my son for the first time ever.”
As it turned out, money wasn't an obstacle. In the five years since that meeting, the project has raised about $50 million. The institute began operating out of temporary quarters in 1998.
Chuck Gardner worked with a team of fathers of autistic sons to make the center a reality. Autism is largely a disorder of sons: About 80 percent of affected children are boys.
Institute co-founder Rick Rollens, former secretary of the California Senate, became a lobbyist for autism after his son Russell was diagnosed with the disease. Like many parents -- but few doctors -- Rollens blames vaccinations for his son's disorder.
"He was never the same after those shots,” says Rollens. “His development slowed down… then he developed the chronic gastro problems and that was the final straw in his tolerance for these immunizations. And he had gone completely into the world of autism at that time."
Parental Supervision Required
What makes this research center different from other mainstream academic centers is, in part, its emphasis on parents. Gardner discovered that some autism researchers had never met someone with autism, so the founders came up with strategies that put parents, kids and researchers together. For instance, the center has a playground in an outdoor courtyard that serves as both a waiting room and an exam and observation room. Parents also sit on the board and take part in key committees.
Parents have insisted on this unusually close collaboration with the research team partly because they help bring in the funding, and because the conventional scientific approach has made little progress. Rollens says they knew that just pouring money into traditional autism research wouldn't get them very far.
"If we were going to wait for mainstream medicine to get around to finding a cure for our kids we would all be old and gray and our kids would outlive us in their condition,” he says. “And as a parent of a child with autism, you worry about that every moment of your waking day."
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