May 2--Parents of autistic children want answers, and in an unprecedented move, federal health officials will be in Sacramento on Saturday to ask how they can help provide them.
At a daylong "town hall" meeting at the UC Davis Cancer Center, a wide range of autism stakeholders will brainstorm about the kind of federally funded research needed on the neurodevelopmental disorder.
"This is the trial balloon," said Isaac Pessah, a UC Davis toxicologist and autism researcher who directs the UC Davis Children's Center for Environmental Health and Disease Prevention. "This is the opportunity for the public (affected) by autism to have their view of what should be researched included in a strategic plan."
That plan is being developed by the Interagency Autism Coordinating Committee, a group of representatives from various federal health agencies charged with coordinating autism research activities nationwide under the Combating Autism Act of 2006.
Those who attend Saturday will represent several autism advocacy groups with different agendas. While some view the disorder as a "difference" that does not need to be cured, others see the answers in special diets, behavioral therapies or alternative treatments such as the removal of metals and other toxicants from the bloodstream.
Many parents with autistic children distrust federal researchers, who generally dispute the potential role of childhood vaccine components in causing the autism epidemic. Some also argue that the government's spending on research so far hasn't yielded many helpful answers.
"I think we ought to be spending more time listening to parents and what they experience with their kids," said Rick Rollens, an autism activist who has a son with the disorder.
Learning to distinguish the differences and commonalities among those affected with autism will allow researchers to better address individual kids' needs. Rollens cited gastrointestinal and immune system problems common to many children with autism as areas ripe for research.
"There are literally hundreds of interventions that parents and others have tried over the years," he said. "Yet everyone is thrown into the same category, so when you study different interventions, you find that while it may not be a great success overall, certain groups do benefit."
For Connie Lapin of Northridge, whose 40-year-old son has autism, the town hall meeting is an opportunity to talk about the long-term consequences of the diagnosis.
She said it's a conversation many parents don't want to have because they believe their child can be cured of the disorder well before they enter adulthood.
"I would be the first person in line for a cure or recovery," she said. "But what that does to a family is takes away their planning and their vision of what is really possible, even if it isn't perfect."
Lapin said she would like the federal government to fund research into the kinds of accommodations that are most helpful to people of all ages with autism.
"This focus on cure and evidence-based treatment is making us lose our way in terms of long-term care and life-span issues," she said. "The person who has these challenges is still a person with the same needs as you and I."
Christine Flowers, a spokeswoman for the National Institute of Environmental Health Sciences, one agency involved in the strategic planning project, acknowledged and welcomed the diversity of views on the subject.
"This is an opportunity to share information both ways," she said. "Sometimes that process is challenging, but everyone in their own way is trying to contribute to finding answers."
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