"We should also look back to the history of drug regulation. It took the Thalidomide epidemic for us to take action. Perhaps autism is the equivalent for environmental chemicals."
By Anne Dachel
We woke up to a different world on Tuesday, August 3, 2010. With barely any notice, the autism community heard that the U.S. Senate Subcommittee on Children's Health would be holding a hearing entitled, "State of Research on Potential Environmental Health Factors with Autism and Related Neurodevelopment Disorders."
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As someone who follows autism in the news, this was a shock. I'm used to stories like the recent series published on the Psychology Today blog by Dr. James Coplan. He couldn't make it any clearer. Autism is something that has always been around--we've just expanded the definition and doctors are better at recognizing it. The numbers haven't increased.
We're all so used to hearing about the genetics of autism. The explosion in autism is a mystery and no one seems in too big a hurry to solve it. We're told we just need more autism awareness and we've been conditioned to accept the reality of one percent of children being on the spectrum.
So today was different. Members of the U.S. Senate would be hearing about how the environment is linked to autism.
Sen. Amy Klobuchar from MN and Sen. Barbara Boxer from CA asked questions and respondents made it clear: Autism is rising dramatically among our children. Genetics can only explain a small percentage of the autism cases. It's not better diagnosing by doctors or expanding the definition of autism. Something in the environment is damaging our children. It's leaving them disabled and dependent.
Speakers addressing the senators included:
Dr. Paul Anastas
Assistant Administrator, Office of Research and Development
United States Environmental Protection Agency
Linda Birnbaum, Ph.D., D.A.B.T., A.T.S.
Director, National Institute of Environmental and Health Sciences and National Toxicology Program
National Institutes of Health, United States Department of Health and Human Services
Issac N. Pessah Ph.D.
Professor, Department of Molecular Biosciences, College of Veterinary Medicine, Director, UC Davis Children's Center for Environmental Health and Disease Prevention
University of California, Davis, Department of Molecular Biosciences
Bruce P. Lanphear MD, MPH
Senior Scientist, Child & Family Research Institute, Professor, Simon Fraser University, Vancouver, BC, Adjunct Professor, Cincinnati Children's Hospital Medical Center
The hearing was two hours long and lots of important things were said.
We were told that autism is costing this nation $35-90 billion annually and that autism is increasing everywhere. We also heard about all the untested toxic chemicals out there that are impacting our health.
Sen. Klobuchar brought up the devastating autism rate among the Somali population in the Twin Cites where one in 28 children is affected.
In the midst of Dr. Birnbaum's remarks, she noted specifically that there were no differences in mercury levels when comparing autistic and typically developing children. She didn't elaborate or explain why she chose to cite mercury.
We heard that there are 80,000 possible toxic triggers out there, including pesticides, flame retardants, lead, and tobacco. It didn't sound like the FDA is doing its job.
Bruce Lanphear described a sad oversight scenario. Children have new diseases with environmental causes. It may not be just a single toxin; it may be the interaction of multiple toxins.
He made the stunning statement, "We know enough to require premarket testing. To continue to experiment on our children is no longer tenable."
I wondered how many parents were aware that we were exposing children to more and more chemicals that have never been tested for their toxic side effects.
Lanphear showed just how desperate things are getting. He said, "We should also look back to the history of drug regulation. It took the thalidomide epidemic for us to take action. Perhaps autism is the equivalent for environmental chemicals."
Paul Anastas also trashed the argument used by many experts, people like vaccine inventor and defender Dr. Paul Offit, by saying that the worldwide increase in autism is real. Genes do not change this fast.
Most interesting was the testimony by Minnesota mom, Mary Moen, mother of a 10 year old son named Max who has autism. She echoed the incredible struggles faced by countless thousands of parents when she talked about what happened to her son:
"A bright and active baby had become increasingly agitated and aggressive as a toddler.
As a preschooler, any social situation was very challenging for Max. He became difficult to manage outside the home safely and was increasingly bothered by loud and high-pitched noises, smells, and touch.His reactions to things he didn't like were explosive and often dangerous."
"At the time he was diagnosed, many around me were asking how Max got autism. We suspected a genetic link but at the time it didn't matter. I was focused on moving forward to help my son who was by now so obviously different from his peers. Everything we read about treating autism told us early intervention was key. We bought books, went to conferences and begged for consultations with over-scheduled experts in the field. .. [We] were frustrated to find waiting lists as long as six to 12 months at facilities that offered these services. I quit my teaching job and my husband cut back on his orthopedic surgery practice."
Max's mother described the hard work that was needed and the absence of appropriate care and schooling. Max is also on medication to control behavior.
Moen listed her hopes for Max in the future and admitted it'll be difficult to achieve them.
She also described "a 48 year old aunt who we also suspect is on the autism spectrum. [She] is unemployed, socially isolated, and entirely dependent on her aging parents. People like her with undiagnosed and untreated autism are an example of autism's cost to our economy and society."
"There are many unanswered questions. We each struggle with the why. I do not believe we can come to a simple conclusion when it comes to the cause and effect of such a complex disorder as autism. While there is an urgent need for resources, it is also imperative that we focus resources on continued research so that we can one day identify its cause. Until we have done the extensive research necessary to understand autism, we cannot leave any stone unturned or rule out any possible factors as the cause of this disorder."
Sen. Klobuchar asked about problems parents of an autistic child go through, and Moen noted especially the waiting lists for diagnosis and services.
Isaac Pessah went into the immune system problems connected to autism. He talked about inflammatory conditions, neuro-developmental problems and the chemicals involved. He gave details and mercury was one consideration:
"We have started to examine whether immune cells from children with autism respond differently to what we call xenobiotic exposures and the two that we've examined thus far [are] mercury and the flame retardants. We picked the latter because we now have evidence that flame retardants do interfere with both the developing nervous system and the immune system-possibly through common mechanisms."
Pessah talked about a new project called MARBLES which is recruiting expectant mothers with a high risk of having an autistic child because they already have one with autism. They’ll study the "biology of the women involved, including taking blood samples, urine samples, labor and delivery samples, as well as following the child for the first three years after birth. Such a longitudinal study is now being modeled."
Pessah said they have about 170 women enrolled and that they hope to have about 200 in total.
Klobuchar asked a very important question at the end of the hearing. She wanted to know, if they were free of any constraints, where would the experts focus research work.
"Because of the complexity of autism spectrum disorders, our lesson learned at UC-Davis is that you need a multi-disciplinary approach. You need to have immunologists talk to neuroscientists, talk to toxicologists and pool their efforts, integrate their efforts in understanding this very complex disorder. And so granted, very large science will address more global issues, I think concerted studies of specific populations will give you valuable answers that could lead to mitigation of autism."
"Given the prevalence of autism, even though it's risen in recent years, I think the kind of study you'd want to do would be prospective, it would be large and you would have multiple measures of various chemical exposures, looking at the children as they develop. That would of course be augmented by a whole host of other types of studies looking very specifically at questions."
Lanphear mentioned looking at "a kind of large birth cohort study" like the National Children's Study.
All of this was a new day for autism. There was no debate over the numbers. This increase is real. The environment is harming our children. That in itself is a big move forward.
What was disappointing was the lack of urgency in all this. Lanphear made it sound like we could take years conducting research on autism. The word mercury came up several times, but I didn't hear about vaccines even once. Autism seems destined to continue as the interminable mystery. The environment may be at fault, but with 80,000 possible triggers, who knows when we'll have any answers.
I wondered who set up the panel reporting to the health committee. Why weren't there other experts and parents there? Everyone had pretty much the same message: We know it's due to toxins but no one knows anything else for sure.
Where were the parents whose children were perfectly normal until they received certain routine vaccinations? I could imagine stunning before and after videos to highlight their accounts.
We could have also heard about the levels of toxins like mercury and aluminum found in these kids.
Why didn't anyone ask why millions and millions of dollars have gone into genetic research when clearly the answers aren't there?
Where were the DAN doctors? Why didn't we hear about biomedical treatments and recovering autistic kids? There could be some great before and after videos there too.
Where were the expects who've done the vaccine research? Why weren't people from SAFEMINDS testifying?
Why weren't we told that untested chemical additives are nothing new? Deadly mercury is still allowed in vaccines and declared to be safe even though it was never tested or approved by the FDA.
Autism advocate and mother of a pre-teen with autism, Nancy Hokkanen, also from Minnesota, made this comment about Moen's testimony:
"I don't see Mary Moen's name on the regional biomedical treatment listserv I co-moderate. Though our children walked similar paths to diagnosis and behavioral therapies, we diverged regarding causality and psychotropic medication. My son's lab tests revealed medically treatable toxicities and nutritional deficiencies. Investigating autistic children's physical disorders can also provide clues to treating older relatives' ailments, to heal the root problem rather than mask symptoms and add side effects."
My biggest concern is over the tone of the hearing. I'd like to hear people call autism a health care emergency. I'd like it if they were going to call in more experts for more opinions on causation. Why are we hearing about long range children studies instead of an immediate look at the kids who got sick that Dr. Bernadine Healy called for two years ago?
Finally, we've officially declared autism to be an environmental disorder. Beyond that, there was little new in this hearing. It's seems we're still happy to leave autism a mystery.
In truth, we can't continue unaffected by the autism epidemic. The cost of this generation will bankrupt us. It's that simple. When has any country prospered with more and more of its children disabled and dependent for life? The real wakeup call was from Bruce Lanphear:
"We should also look back to the history of drug regulation. It took the thalidomide epidemic for us to take action. Perhaps autism is the equivalent for environmental chemicals."
Anne Dachel is Media Editor of Age of Autism.