By Anne Dachel
On November 29th a congressional hearing will again address autism. The simple truth is, we can’t afford to bring up the issue, let lots of people talk and then go home with nothing resolved. Something needs to be done about an affliction that is decimating our children and that officials seem unable to understand or to stop.
The advocacy group SafeMinds asked parents to contact their Congressional Representatives and urge them to attend the hearing.
SafeMinds also asked us to consider four questions regarding how the government is dealing with autism:
1) Do you think the federal government is doing enough about autism?
2) Do you think the Interagency Autism Coordinating Committee has helped your family?
3) Do you think federal policies have prevented new cases of autism?
4) Have you seen results from the government's hundreds of millions of dollars in research spending?
Please remember we’re asking these questions in 2012. The autism numbers have been steadily
increasing over the last two decades to what can only be described as an epidemic rate while
mainstream medicine and U.S. health officials have stood by helplessly, unable to tell us the cause
or the cure for autism. There’s nothing a mainstream doctor can tell a new mother whose baby
was born healthy and is developing normally that will ensure that this child won’t also end up on
the autism spectrum by age two. On a daily basis we’re given news reports where experts
solemnly tell us that all the autism is merely better diagnosing and an expanded definition of a disorder that’s always been around.
In 2006, the Combating Autism Act was passed by Congress and signed into law by President
George W. Bush. This legislation authorized nearly a billion dollars over five years for screening,
education, services and research. The act created the Interagency Autism Coordinating Committee
chaired by Dr. Thomas Insel. The act was reauthorized in 2011.
Here’s what the advocacy group, Autism Speaks, had to say about the reauthorization:
“The new law continues the federal government’s commitment to autism research, services and
treatment at current levels, authorizing $693 million over the next three years. The original act
provided nearly $945 million over five years. Since its passage in 2006, significant advances have
been made in determining potential causes for autism as well as promising new early intervention
behavioral treatments. By signing CARA into law, President Obama has ensured the federal
government’s commitment to autism so that crucial research can continue unimpeded for the next
So how concerned is Congress about autism? Besides the CAA, what have they done to address
a disorder that has claimed a million children in the U.S.? How interested are they in
the heated controversy over vaccines and autism?
This is some of history of how the Congress has dealt with autism.
In 2000, Representative Dan Burton held a six hour hearing on autism and childhood vaccines.
Burton talked about his grandson’s regression following his routine vaccinations. Other legislators sounded equally concerned about the possible role vaccines could play in the development of autism. Parents testified about the difficulties of raising an autistic child and about the link they saw between vaccines and their child’s autism. There were calls for adequate studies to discern any causal relationship. Dr. Andrew Wakefield was there presenting a report on his discovery of a new bowel disease he had observed in autistic children. Dr. John O’Leary from Coombe Women’s Hospital in Dublin Ireland testified on the presence of measles virus in the children with autistic enterocolitis.
Other well-credentialed experts raised serious concerns about vaccines and autism and the failure of health officials to address vaccine safety thoroughly. Wakefield had his critics at the hearing and representatives of the Centers for Disease and Prevention were there too attesting to the benefits and safety of their vaccines. Dr. Paul Offit was in attendance and he criticized the committee for even holding the hearing because it could shake public confidence in vaccinations. Offit was put on the defensive about his financial ties to Merck. Other notables in the autism community included Dr. Bernard Rimland. Numerous aspects of the controversy were discussed at length. It was clear twelve years ago that there were experts on both sides with strong arguments for each of their positions. Back in 2000, the autism ratewas one in every 500 children.
On August 5, 2009, the Senate Appropriations Subcommittee chaired by U.S. Senator Tom
Harkin held a hearing on the state of autism research, treatments and interventions.
Dr. Insel testified that he still wasn’t sure if more kids actually have autism and he denied that vaccines were a factor. Insel showed no interest when Harkin brought up the idea of a comparison study of vaccinated and unvaccinated children. Insel was firm that the topic of vaccines and autism had been studied enough.
Autism mom Dana Halverson testified about her daughter’s autism and the link to vaccines. She
spoke about the lack of oversight and the serious conflicts of interest among health officials and in
Then on August 3, 2010, the Senate Subcommittee on Children's Health held a hearing entitled,
"State of Research on Potential Environmental Health Factors with Autism and Related Neurodevelopment Disorders." I listened to the testimony and wrote this piece for Age of Autism.
In 2010, it still seemed that lawmakers were taking autism seriously. It looked like they wanted answers. They had experts come to testify. They talked about the cost of autism. Environmental triggers were discussed. We were told that there are around 80,000 possible untested chemicals that could be involved.
Dr. Bruce P. Lanphear from Vancouver BC was most notable because he criticized the lack of oversight. "We know enough to require premarket testing. To continue to experiment on our children is no longer tenable."
Dr. Issac N. Pessah from UC-Davis talked about a longitudinal study on expectant mothers who already had an autistic child and studying flame retardants as possible triggers.
One senator asked Pessah what he’d look at if there were no constraints. Pessah’s answer: “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.”
Has any of this happened? In 2010, the autism rate was one in every 110 children, and today it’s one in every 88 kids.
At the end of my story on the 2010 hearing I wrote this:
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….
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.
One thing’s different today in 2012, we have the knowledge that while the federal government denies that there’s any evidence that vaccines cause autism, a federal program created by Congress has compensated dozens of families of children for vaccine damage that included autism. http://www.ebcala.org/unanswered-questions These findings were summed up in a report called, “Unanswered Questions.” Louis Conte, father of triplets, two of whom have autism, was instrumental in this project. He was interviewed on HDNet TV about the unanswered questions out there.
I asked Louis about the upcoming hearing and about what he wants to see happen in Washington this time. Here is his response:
I can understand why Congressional hearings on autism would start with this generalized approach. The Autism Epidemic is a complicated story and you have to start somewhere and then drill in.
However, make no mistake, Congress needs to drill in.
First of all, the work that Brian Hooker has championed regarding the 2004 IOM decision through his FOIA requests really needs days of questioning by Congress. There are thousands of documents to review and a number of individuals who need to explain their conduct in suppressing real science while facilitating the publication of research of dubious quality (as in the case of Poul Thorsen).
As many are aware, I have been part of a team of people who have focused on the National Vaccine Injury Compensation Program (NVICP). This focus lead to the peer reviewed publication of Unanswered Questions from the National Vaccine Injury Compensation Program in the May 2011 Pace Journal of Environmental Law. We found 83 cases of individuals compensated for vaccine injuries for brain damage and seizures that also included autism. These were only the cases we could find and it is likely that there are hundreds more. The Department of Health and Human Services (HHS) didn't provide this information. We had to find the cases through available public records after an extensive investigation that took over two years.
We ended Unanswered Questions with two requests. The first request was that Congress hold hearings on the NVICP and, second, that there be an independent assessment of health outcomes of cases that the federal government has compensated for vaccine injury. It is time to finally determine what a vaccine injury looks like.
The existence of so many cases involving autism was never disclosed by HHS, The Division of Vaccine Injury Compensation, the Department of Justice Attorneys or the Office of the Special Masters to the 5000 petitioners in the Omnibus Autism Proceedings (OAP). Why not? The entire program acted as though autism was a disorder that had landed in their program from outer space when, in reality, vaccine injury cases involved autism from day one. The existence of autism as a result of vaccine injury is of enormous importance to the entire country and should never have been regarded as the property of the Division of Vaccine Injury Compensation. Withholding this information from the public has had disastrous public health consequences and can be viewed as having allowed the autism epidemic to occur. Further, it also amounts to government sanctioned discrimination against the petitioners who used the word "autism" to describe their child's vaccine injury.
Congress has never held hearings on the NVICP. The response of the federal government to autism is epitomized by the injustice that occurred - and continues to occur - in the National Vaccine Injury Compensation Program. If Congress really wants to know what the federal government is doing about autism, they need look no further than at the program they created in 1986
It’s impossible to have an in-depth discussion about autism without bringing up vaccines. Twelve years ago vaccines and autism were the subjects of a six hour congressional hearing. And then they adjourned. There were more hearings, but nothing was done.
For their part, officials have never waivered from their claim of no connection to the ever-expanding vaccination schedule. They’ve produced study after study all showing no link and all tied to the vaccine industry. On the other side, independent research is piling up, raising serious concerns about vaccine safety. Both sides can’t be right. Either vaccines are culpable or they’re not. In my opinion, if this issue is to be resolved there has to be an independent comparison study done looking at fully vaccinated and never vaccinated children. There is no excuse for not doing it. There are thousands of unvaccinated kids to study. If never-vaccinated children have autism at the same rate as fully vaccinated ones, this question would be answered once and for all.
Anne Dachel is Media Editor for Age of Autism.