A New Approach to Autism
MIND Institute Sees Parents as Essential to a
Cure
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MIND Institute co-founder
Chuck Gardner and his son Chas, 10. Gardner's fondest dream is to
make the center obsolete by coming up with a cure for Chas'
disease.
Provided by: Chuck Gardener
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Rick Rollens and his 12
year-old-son Russell. Rollens hopes the institute's unorthodox
approach may lead to a breakthrough that has so far eluded
mainstream research.
Provided by: Rick Rollens
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Jan. 20, 2003 -- 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."
In Depth
NPR reports on a Centers for Disease Control study that says autism
may be more prevalent than thought.
NPR's Jon Hamilton reports on evidence that autism begins in the
genes.
NPR's Jon Hamilton reports on a prominent vaccine researcher's claim
that his views on a link with autism have been misrepresented.
NPR's Vicky Que reports on a new study that provides the most
conclusive evidence yet that the measles/mumps/rubella vaccine does
not cause autism.
Other Resources
The
MIND Institute at University of California, Davis
The MIND Institute provides an extensive list of autism-related Web
links.
Autism Society
of America
Cure Autism
Now Foundation
Autism Research Institute
Autism facts from the National Institute of Child Health and Human
Development
Research and news from the National Library of Medicine's Medline
PLUS.
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