Dr. Tom Insel on Autism: "How We Prepare of Nation for a Million People Who May Need Significant Services"
Dr. Thomas Insel is an important expert when it comes to autism. He’s the director of the National Institute of Mental Health (run by the National Institutes of Health) and he’s the chairman of the Interagency Autism Coordinating Committee. He periodically reports to Congress on the progress the IACC is making with autism.
Insel recently gave a one and a half hour talk at NIH on what scientists now know about autism HERE. Members of the audience were students and credit was being given for attending this lecture.
I listened to the entire talk and noticed several new pieces of information in what Insel was saying. As expected, he talked about the spectrum of autism or “autisms” as he put it. He brought up genetics several times and stressed the need for early intervention. He stated that a percentage of children with autism were normally developing as babies but later regressed.
Insel then addressed the increase in the rate of autism. Rather than referring to a rate of one in 110, he cited an article in Pediatrics from last year that announced that one in every 90 kids in the U.S. is affected. He noted the fact that in 1992, the rate was one in 1,500. He talked about his days in med school when he never heard about autism.
Next Insel made what to me was a stunning announcement. He said that if one in 90 children has autism, it means that there are about 700,000 children in this country with autism. Furthermore he added, "Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen." Insel described it as "a huge wave that is moving through the system."
This was alarming information and it’s rare for any official to talk about autism in these terms. Insel was at a loss to tell the audience why this is happening. He did make it clear that the claim of better diagnosing and expanded spectrum could only explain a small portion of the increase. He talked at length about environmental toxins being the cause of the soaring rate of autism. He also admitted he’s clueless as to what the exact triggers might be. "What's probably more striking here is what we don't know."
Insel said that he and others had actually made a list of possible toxic exposures that might be behind the autism increase and he named fluoride and fertilizers as examples of what they came up with. In the end, they came to no conclusions.
Millions of dollars are going into autism research. He talked about the IACC, along with the strategic plan of action and the national data base. He made it clear that the U.S. government takes autism seriously.
What really got my attention was a passing comment he made about what the future holds for this country. In Insel’s own words, “We have responded to this AS IF IT'S A CRISIS. WE SEE THIS AS AN ENORMOUS PUBLIC HEALTH CHALLENGE. If you look at those numbers, the increase and recognize how many of those kids will become adults, we ...also need to be thinking about how we prepare the nation for a million people who may need significant amounts of services as they are no longer cared for by their parents or as their parents are no longer around."
You’ll notice that Insel did not actually call autism a crisis. He said “as if it’s a crisis.” No one at the Centers for Disease Control and Prevention or the American Academy of Pediatrics has ever referred to autism as a crisis. “Public health challenge” is the strongest language ever used by officials at the CDC and it looks like everyone in positions of authority has gotten the message that autism is merely a “challenge,” never a “crisis.”
Personally, the idea of a million disabled adults overwhelming social services in the coming years seems more of a disaster/emergency than a crisis. In addition, Insel gave the audience no idea of how he intends to “prepare the nation” for the autism tsunami.
Insel added, "We need to figure out how this gets paid for and who provides the care,” but I can’t imagine what solutions he’ll come up with to meet this challenge.
Could there possibly be a worse response from someone in the position Thomas Insel is in? There was no alarm being sounded. He used the term “interesting” most often in referring to what they were finding out about autism. He's in the midst of this nightmare, charged with addressing what's happening to hundreds of thousands of children right before his eyes, yet he continues to scratch his head over what’s behind the epidemic. Insel doesn’t hesitate to say over and over that “we don’t know” as he’s done for years.
Insel began his talk by saying: "The best experts may be the parents," but he has never honestly addressed the claim by countless thousands of parents that their children were healthy and normally developing until they received certain routine vaccinations.
Thomas Insel admitted this is an epidemic increase of disabled children. He pointed out that it’s worldwide and that the numbers continue to grow. He’s aware of what will happen to this nation when one percent of adults as well as children have autism. He readily acknowledged that he has no way of preventing more and more children from falling victim to autism. And he talked about all of this with no sense of real urgency.
Finally, most conspicuously absence from Insel’s hour and a half lecture was any mention of the most heated controversy in medicine today: the claim that an unsafe, unchecked vaccine schedule is behind the worldwide autism epidemic. He never brought it up nor did anyone in the audience during the questions at the end. It’s more proof that no matter how bad the news is about autism, they’re never going to honestly address vaccines.
Last August, I wrote a piece for Age of Autism about Thomas Insel's testimony before the Senate Appropriations Subcommittee chaired by U.S. Senator Tom Harkin. HERE
In his remarks in August, Insel sounded no alarm over the autism rate. He wasn't sure at that time if there was a true increase. Insel said, "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."
While he did state, "We have a whole wave of children with autism who'll soon be adults with autism," he didn't warn us that we need to prepare for the toll a million autistic children will take as adults in need of "significant amounts of services."
In the nine months since Insel briefed Harkin, the autism rate from the CDC increased from one in 150 to one in every 110 children and Insel has come to accept that the epidemic is real. And although he's no closer to knowing what the true cause is, he knows that as adults, Americans with autism will have an even greater impact on our economy.
I'm wondering if Insel is going to contact Senator Harkin to advise him of his latest findings. Or is he only going to talk about this to classes at NIH? Will the government have to wait two years until Insel goes back to Capitol Hill to report on the state of autism in America?
Anne Dachel is Media Editor for Age of Autism.