By Anne Dachel
On Wed, August 5, many of us watched a live broadcast of the Senate Appropriations Subcommittee chaired by U.S. Senator Tom Harkin. The focus was on the state of autism research, treatments and interventions. (HERE)
A number of autism experts and parents addressed the senators. Two speakers exemplified the controversy that rages in this country over vaccines and autism. One was Thomas Insel, M.D., director of the National Institute of Mental Health and chairman of the Interagency Autism Coordinating Committee (IACC), the other was Dana Halverson, co-founder of BEAT-Iowa and mother of Robin, her seven year old daughter with autism.
Sen. Harkin opened the hearing talking about autism. He made it clear: Autism has environmental triggers and "the rate of incidence is growing." He also said we have to look at "how to address the needs of the growing population of adults with autism."
Insel testified first. He gave the overview of autism with the standard definitions we've all heard over and over. He said 10 to 20 percent of autistic kids regress. "[They] seem to develop quite well for the first 18 months and will clearly lose language, lose function."
Insel spent a lot of time talking about research on "genomics," "syndromes," and "rare but significant mutations," assuring us that there's "clearly a genetic factor at work here." He also feels that "we still need to learn how genes and environment interact."
Insel then turned his attention to the prevalence of autism.
He quickly added, "The 10 fold increase in prevalence is of great interest to many of us. I just want to just caution you that a change in prevalence is not unique to autism. We've seen a 40 fold increase in the prevalence of pediatric bipolar disorder over the same period. We've seen perhaps a 10 fold or greater increase in attention deficit hyperactivity disorder in children over the last three or four decades."
What was most astonishing to me listening to this information was Insel's total lack of concern over these increases. He gave no reason for the changes except to say, "We have to remember the difference between prevalence, which can be affected by ascertainment, by changes in diagnosis, and the difference in incidence, which we don't have right now, good evidence that there's a true increase in the incidence...the rate of new cases."
He added, "That's an area that requires more research."
What? With autism overwhelming our schools, with hundreds of thousands of children across the country now diagnosed with the disorder, Insel was trying to convince the committee that they're still not sure if autism has really increased. In the face of parents testifying over a lack of services and bankrupting costs, Insel was trying to pretend that all this autism is nothing new. How many more years are officials going to be scratching their heads over the autism rate? The CDC gets billions to run health care in the U.S. and they can't give us the current rate of autism. It was slightly disingenuous of Insel to say that the rate of one in 150 was from eight year olds in 2007. Certainly someone in his position knows that rate is from studies done in 2000 and 2002, but not released until 2007.
And in 2007, when the CDC announced their updated autism figures, I wrote "The Really Big Lie About Autism" to show that no matter how bad the numbers, officials will never admit that there are really more kids with autism. Insel's comments are proof that the lie is still alive and well.
Furthermore, on April 17, 2007 Insel also testified before Senator Harkin and the Senate Appropriations Subcommittee. (HERE)
This is what he had to say about the rate of autism. "It is unclear whether the rise in prevalence is due to a rise in incidence, better identification and awareness of the disorder, or both. A similar increase in prevalence has been observed in many countries outside of the U.S., and in virtually every study, boys are three to four times as likely to have ASDs compared to girls."
So what have Insel and the experts at NIMH been doing for the last two years? After all that time they can tell us nothing substantial about why hundreds of thousands of our children are now disabled with a devastating disorder no one ever heard about 25 years ago. They still don't even know if there's been an increase in the rate. How many more years will Insel be coming back to the senators with nothing worthwhile to report?
Insel also told senators, "We need to focus on early diagnosis and good interventions" and he did note, "We have a whole wave of children with autism who'll soon be adults with autism."
Listening to his remarks was infuriating. He painted a picture of autism as this mysterious disorder that they're really trying hard to understand. There was no sense of alarm or urgency in his remarks. The words "crisis," "epidemic," and "prevention" were not included. To hear that a stunning 10 fold increase is merely "of great interest to many of us," showed an astonishing lack of compassion for the suffering of countless thousands of children and their families.
If Insel is not convinced that autism is on the increase, he shouldn't be concerned about care for adults with autism. If autistic individuals have always been around, but diagnosed as something else, we should have plenty of services already in place to address their needs.
Insel also told us about the IACC, which he chairs. He had a slide of the IACC Strategic Plan Vision:
"The strategic plan will insure research which will profoundly improve the health and well-being of every person on the autism spectrum across the lifespan. The Plan will set the standard for public-private cooperation and community engagement."
Where was goal of stopping autism from claiming more children? Where was the plan to recover kids with autism?
To his credit, Senator Harkin brought up the subject of a link between vaccines and autism several times. Insel agreed that "there is no question that there are environmental factors at work, maybe prenatal factors." But he said, "The only factor that has been explored in great detail has been vaccines."
Harkin kept referring to the increase in the vaccines schedule and the increase in autism, asking if there could be an association. Insel tried hard to convince Harkin that while there are more vaccines in the recommended schedule, the good news is that there are far fewer antigens. He kept bringing up the 16 studies involving hundreds of thousands of children. He solemnly stated, "There is no evidence at this time of any association with the number of vaccines, the kinds of vaccines and ...autism."
When Harkin asked about a vaccinated vs. unvaccinated study to compare autism rates, Insel said the IACC had asked the National Vaccine Advisory Committee about it and they felt it wouldn't be ethical to not vaccinate a group of children for such a study. When Harkin pointed out there are lots of unvaccinated children out there that could be studied, Insel ignored him.
Harkin continued about vaccines saying "the problem is we don't know of the effects of vaccines."
Insel went on to say that at the IACC this is a "highly charged topic." There are those who feel there's an issue here and there are those who are saying "enough already."
"There's an environmental factor at play here and we've spent a lot of money and a lot of time doing these 16 studies and nothing has shown up on this question. Let's move on."
Funny thing, for someone who acknowledges that there are environmental factors causing autism, he couldn't give us one that they're looking at. The only thing they know for sure, according to Insel, is that vaccines don’t contribute to autism.
Insel assured the senators that all the science is in on a possible link between vaccines and autism. I couldn't help but note that Insel is a psychiatrist and he's telling us the ingredients in the toxic cocktails injected into our children are safe. Citing "the studies" proves nothing. Julie Obradovic has shown why these studies have not and will never settle this controversy. They're flawed, the results manipulated, and the researchers are financially tied to the vaccine industry. In Julie's words, "Each and every study was conducted and/or funded by someone who patents, manufacturers, promotes, endorses, profits from and/or defends in a court of law vaccines."
Just once at one of this meetings where experts talk about autism, I'd like to see a toxicologist, one with no conflicts of interest, willing to put his or her reputation on the line vouching for the safety of vaccines containing mercury, aluminum, and fluoride, to name a few of the commonly used toxins. I've never seen that happen and until Insel can find such an expert, he has no credibility telling us these things are safe.
While Insel could say nothing significant about progress in understanding, treating, or recovering victims, he stated, "There's rapid progress. There's an urgent need and there's a tremendous opportunity right for now for progress."
In stark contrast to Insel, was the testimony of Dana Halverson. I don't know where Insel's words were coming from, but Dana spoke straight from her heart and her testimony was riveting. I only wish I could have observed Insel's face while she was talking.
Dana talked about her daughter's autism. She brought up the host of health problem Robin has, including, "heavy metal toxicity."
Dana predicted that the huge cost of autism will soon fall on taxpayers as these kids age out into adulthood. She said we should be alarmed over the sickest generation of children that we've had in 60 years.
Next Dana made it clear that this isn't just about the science and everyone knows it.
These were some of her comments:
"Posing the right questions to unbiased and unconflicted scientists is essential to obtaining constructive answers."
"Agencies charged with protecting the health of our children suffer from serious financial conflicts of interest. These government agencies need to be held accountable."
"Senators, it is difficult to sit at this table and tell you that you have been lied to, that we have all been lied to. Mercury levels exceeding EPA safe levels were in Robin's vaccines..."
Dana cited the vaccine makers' material safety data sheet on thimerosal where it says it caused neurological damage in trials on animals. She had medical experts sitting behind her for backup.
She spoke about the power and influence of the drug industry over our health agencies. "Where else in the world do we see this scenario of no accountability and conflicts of interest?"
Dana called for a "valid, unbiased study."
She addressed the inaction of government. "Those in power have not listened and discerned facts and acted on those facts to protect the health and future of the children of this nation... instead [they] have protected industry."
Her tears at the end I'm sure were mirrored in many of the faces of those listening to her.
It must have been hard to move on after Dana was finished. There was lots of talk about services and the issue of a vaccinated/non-vaccinated study was again brought up by Harkin. Dana challenged Insel's criticism of such a study by citing the large unvaccinated population right in Chicago in Dr. Mayer Eisenstein's HomeFirst medical program.
What was resoundingly clear from listening to Insel was the fact that little had changed since he last reported to this committee in 2007. Most of the research he talked about involved genetics, despite the fact that genetics alone couldn't possibly explain what autism is doing to our children. There was no sense that the IACC would ever have real answers.
If Thomas Insel were genuinely dedicated to finding out about autism, he'd have talked about three things:
1. He would have said that they were going to look at the kids who were normally progressing and then suddenly regressed. He would have called for a close examination to find what might have triggered such a change. While Insel mentioned regression, he expressed no real concern.
2. Insel would have told the committee that thousands of parents now report great improvement in their children and even recovery following things like changes in diet, chelation for heavy metals, and hyperbaric oxygen treatment; this is a sign of hope and we need to look into these things.
3. Finally, Insel would strongly support a comparison study between vaccinated and unvaccinated children. Instead he refused to accept that there was an ideal unvaccinated heterogeneous population for study. He stated again, "Let me be very clear on this point... This problem has been looked at over and over. Sixteen large scale studies have plowed into this subject at many levels..."
Harkin was not convinced and still asked why the study couldn't be done.
All this makes clear that there is a growing demand for a vaccinated vs. non-vaccinated study to compare autism rates. It should be pointed out that in June Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) called on HHS Secretary Kathleen Sibelius to dedicate between 1.6% and 6.6% of the $300 million in federal stimulus funds earmarked for the purchase and distribution of vaccines to fund a major study of health outcomes -- including autism -- among vaccinated and unvaccinated people. (HERE)
If I had had the opportunity to ask Thomas Insel a question, I would have said, "Since you truly believe that science has settled the issue of a link between vaccines and autism, why won't you welcome such a study? It would be the proof to end the controversy. If the incidence of autism were the same in both study groups, we'd all agree to move on. If there would be a marked difference between the two, we'd need to stop the horrific damage being done to countless thousands of our children."
One statement by Dana Halverson really got my attention: "These government agencies need to be held accountable."
That must be a very frightening thought to Insel and lots of other people. Polio was an epidemic when it struck one in 3,000 Americans in the 1950s. Autism affects far more and it strikes children. What's important to remember is that most victims of polio recovered and went on to lead productive lives. The same won't be said about the victims of the autism epidemic. They will need support and care for the rest of their long lives.
The cost to taxpayers has been compared to an approaching tsunami. In the words of Dana Halverson, "Government agencies need to be held accountable."
Anne Dachel is the media editor of Age of Autism.