Doctors and Feds Need To Help Families Struggling With Autism
By Christina Adams
Lately, statements from anti-mercury parents of autistic children have cropped up in media outlets from the New York Times to the Internet. There's a Washington anti-mercury rally on Wednesday. The mercury issue is finally at the boiling point.
People who aren't part of this debate don't understand the passion, indeed the anger, behind it. As the parent of a child diagnosed with autism five years ago, I do. It's the result of institutional neglect, dawning suspicions about toxins like mercury and new understanding of how little has been done to help our children.
For example, at a May gathering of 700 international scientists in Boston, a new study linking autism to children's malfunctioning immune systems was announced. Immunologists at the M.I.N.D. Institute at UC-Davis showed that children with autism have different immune system responses than children without the disorder - evidence of a possible biological activation of autism.
Many parents have long believed that autistic symptoms are sometimes triggered by ill-timed or unclean vaccines, antibiotics, viruses or other subtle assaults. Other conference information indicated that environmental toxins may include chemicals like PCBs (polychlorinated biphenyls) and air pollution, in addition to other brain, genetic and nutritional issues.
This information means autism might be addressed by fixing the underlying immune system abnormalities, according to my son's main pediatrician, California doctor Michael Goldberg, who treats autistic patients. So I waited for a reaction from major health authorities. There was almost none.
When families enter the autism world, few are told how to help their "on the spectrum" child. One parent I know couldn't even get a diagnosis from experts: Finally the photographer at Sears told her that her son was autistic. Parents are rarely told about basic therapies, let alone special diets and medications that can ease symptoms and move children toward recovery. So they trudge along with advice from a few caring doctors, support groups, books and shared recipes - and hope. Truly, our home-spun methods have helped many children get much better.
After my nearly 3-year-old son was diagnosed by his 20-year-old cousin (she worked with autistic kids), neighborhood moms with autistic children were my first sources of medical, legal, scientific and dietary knowledge. Many are light-years ahead of mainstream medical practitioners.
As my husband and I worked to recover our son, I too detected various linkages to autism, sensory and attention-related disorders, based on families' histories, environmental triggers and medical, neurological and dietary issues. Nightly phone calls and e-mails from thousands of distressed families over the years have provided one hell of a medical school.
Still, we desperately need answers. Our trial and error treatments are filled with guesswork. Currently, many parents are trying chelation, a process that strips metals from a child's bones and brain, hoping that removing the mercury and other metals often found in autistic children can help them improve. I haven't approved it for my son, as it can be hazardous, and several studies indicate it does not raise long-term IQ or other skills. But I follow the emerging reports from families with interest, because they provide the therapeutic proving ground.
Autism parents are tackling problems that concern everyone, because vaccine safety and environmental pollutants are related to the long-term health of our species. In January 2004, the American Academy of Pediatrics sent out a special alarm notice that one of every six U.S. children now has a behavioral or developmental disorder, and one of every 166 kids now has a form of autism. And a recent study links greater amounts of environmental mercury to increased autism in Texas. Still, the federal government and medical authorities remain largely silent.
We want the experts to be "fixers" - to tackle the looming problems illuminated by autism-related research so we can spend our time with our kids. My son, now a bright, inquisitive 7-year-old, suggests, "Mom, why don't you make a Web site called 'How I Got My Child Better'? That way people can log on and you won't have to spend so much time on the phone." If the world would really listen to families affected by autism, it could be that simple.
Christina Adams, a former Madison resident, is the author of "A Real Boy: A True Story of Autism, Early Intervention and Recovery" (Berkley Books, 2005).
Web site: www.christinaadamswriter.com.
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