Autism forum allows parents to have a say

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Autism forum allows parents to have a say

By Dorsey Griffith - dgriffith@...

Published 12:00 am PDT Friday, May 2, 2008

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 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 toxicologist and

autism researcher who directs the UC 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. "

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. "

http://www.sacbee.com/101/story/907041.html

Amy

Fighting the fight for all our children's rights...