By Anne Dachel
Dr. Thomas Insel, chair of the Interagency Autism Coordinating Committee (IACC) and director of the National Institute of Mental Health can be found on several Internet sites talking about autism. Over the last few months, he's been to places like the National Institutes of Health and the Mass. Institute of Technology lecturing on the disorder plaguing one percent of U.S. children.
In Dec 2009, he spoke at MIT. (HERE) This was four months after he testified on autism before U.S. Senator Tom Harkin's subcommittee last Aug. In Aug, Insel still wasn't sure if there are really more kids with autism, but by Dec, he was convinced--the increase is real.
Personally, if I were in Insel's position, I'd be really worried. One percent of children are autistic. One in every 70 boys is autistic. Insel acknowledges that something in the environment is responsible for this global explosion in a neuro-developmental disorder and he readily admits he has no clue what is behind this.
I think of the autism epidemic on a par with other national emergencies like the San Francisco earthquake, Pearl Harbor, and the World Trade Center Bombing. In many ways, it's worse. In those other crises, we understood what happened and we could take action. With autism, no one can tell us anything. Insel's MIT speech epitomized this paralysis.
What's stunning to me whenever Insel talks about autism, is his relaxed, smiling manner. He's the guy in charge of a federal committee created by Congress to address autism and he's spent years telling us he knows nothing. And he's not worried. I've watched hours of Insel discussing autism, at MIT, at NIH, and in an interview with Dr. Peter Bearman from Columbia University. At the end of each talk he leaves us with autism, the mystery, and he calls for more studies.
At MIT, Insel presented his usual autism power point slides and went through the standard autism info. He defined autism. He showed videos of a normally progressing baby who regressed into autism between one year and 18 months and ended up as a non-verbal 14 year old. This regression was described by Insel as "really a very interesting problem, which we don't fully understand."
Insel presented slides of brain scans and DNA strands and talked about genetics.
Power point: "Finding the Genes for Autism"
He noted that 10 percent of cases have a genetic link.
"One of the biggest risk factors for developing ASD...appears to be paternal age."
"The father doesn't have autism, but his offspring would."
"The concept here has been, as fathers, as men age they have more divisions of their germ cells.... [This] could explain why the father doesn't have autism, but his offspring would. ....This increase in prevalence that we're seeing could be explained in part by aging paternity in the population."
In talking about the genetics of autism, Insel used words like "spectacular," "striking," and "amazing."
In the end, he had to admit that genes "won't explain all cases."
THE INCREASE IS REAL
Next Insel turned to prevalence. "There's this very interesting discussion that still goes on about prevalence and what is happening over these last two decades."
"In the 1980s,...I remember having to look far and wide to actually find a child with autism."
"I'd never seen any children with autism through all of my training."
"I didn't actually know anyone that I trained with who'd actually seen a child with autism."
He said he'd seen the data from PEDIATRICS magazine putting the current rate at one in 90, but he admitted, "I'm not sure what to do with these data."
"I don't know of any data quite like this over a 20 year period which shows this striking increase."
Insel said we don't know what's driving this. We know it's not because of people who were labeled something else. He said it's not diagnostic substitution.
It sounded like he was talking about a real emergency. A shocking number of our children now have a disorder that was previously unknown. Insel can't tell us why and there's no way to prevent more children from becoming victims. Amazingly, Insel isn't worried that the one in 90 rate might get worse. What if it's one 50 in the next two years?
Insel said we need to understand that this is a "synaptic disorder" (relating to or involving a junction between nerve cells).
"I said before this isn't just genetics... There have to be environmental factors."
"We have barely been able to scratch the surface."
"There are something like 80,000 potential toxicants."
Insel talked about prenatal exposures to toxins.
"Environmental Influences in Autism: What do we need?...
"Why do we care?"
Insel never really addressed the "Why do we care?" question, but he ended the lecture talking about lots of things from better detection and intervention to having more studies.
He kept showing us brain scans of children and talking about neuro-imaging while he continued to say he didn't know very much.
He did say he believes this is really "10, 20, 40 disorders."
As far as what the environmental exposure behind autism might be, Insel was at a loss. The one thing he is sure of is that VACCINES DON'T CAUSE AUTISM.
"The only thing I would argue has actually been investigated with any rigor, and even then it's limited, is the vaccine hypothesis. There have been these very extensive epidemiological studies of vaccines and autism, in France, in Denmark, in the United States, hundreds of thousands of children included. That's actually, surprisingly come up empty-handed. Probably the best study is the naturalistic one where thimerosal, which was purposed to be the source of autism--it's a mercury additive and mercury's a neurotoxin, that was a preservative in many of the vaccines through the 90s. IT CAME OUT OF ALL VACCINES IN 2001 and you don't see a drop-off in that Dept. of Disability Services graph after 2001, 2002. So I think that's one, you can't say it's never had any impact, BUT YOU CAN CERTAINLY SAY IT'S NOT DRIVING THIS HUGE INCREASE."
So many things have changed according since the 1980s according to Insel. Smiling broadly he told us the list is enormous and we've barely begun to crack that.
QUESTIONS FROM THE AUDIENCE
A dad challenged Insel on the claim that the mercury was removed from ALL vaccines in 2001. Insel quickly admitted that the dad was right, it's still in the flu shot and maybe some others.
The dad brought up aluminum in vaccines. Insel didn't address it.
The dad asked why polio was an emergency for the U.S. when it affected one in 5,000 people, but one percent of children with autism isn't. Insel ignored the question.
Instead, Insel tried to change the subject. Throwing up his arms, Insel lamented, "My argument is that there are about 900 things we could be looking and that is the only thing we've looked at so far, at least epidemiologically. THE SIGNAL ISN'T THERE--YET.
"I just don't want to get wrapped around that issue. I want to look at some of the some of the other 899 because we might miss a really big signal if we get focused on deciding prematurely that we really can explain this, we just haven't done enough studies of it. We've done some and those studies are so far uniformly negative.
"In terms of the vaccine stuff, if thimerosal were really driving this 13-fold increase...I just can't imagine...we'd have seen some effect of taking it out of 90 percent of the vaccines, so you know, I just think it's time to look elsewhere for what might be driving."
Next the questioner brought up biomedical treatment and recovery. He said his autistic son recovered with biomedical help. The father wanted to know why Insel wasn't interested this. He said the children with autism are "sick kids."
Insel jumped on the topic. "We've just launched a study of recovery. I couldn't agree with you more. This field came..., I couldn't agree with you more. Think where we were 30 years ago. This was about blame the parents. It was due to refrigerator mothers. And all of the interventions were based on that hypothesis with a psychological bent to them. What I'm telling you now is, ...this is a biological problem based on a problem with synapse formation. There's no reason to think that this limited to the brain. We know many of these kids have other symptoms and signs ...that cause the most problem. I'd be the first to tell you that we need to be thinking very broadly about various forms of this disorder, some of which are likely going to have lots of other systems affected. Actually, I'd tell you the same thing for depression. ... The brain is connected to the rest of the body."
Obviously, if it weren't for the audience, Insel wouldn't have brought up the study of biomedical treatment and recovery. He didn't mention it in the talk, only at the questions at the end. Insel talked about this recovery study five months ago, but I've not heard anything about it.
Nothing ever changes in what Insel says. In the MIT speech, he describes autism as "a really important public health problem." (And that phrase is especially infuriating to me. It sounds like we need cleaner drinking water.)
Insel pretended that the whole controversy over vaccines was about thimerosal. He knows that's not the case but it's easier to sell his message if he covers up the real issue.
Insel may be able to dismiss the vaccine link and dilute the topic by talking about genes and older dads, but those numbers continue to haunt him. THE INCREASE IS REAL. IT REALLY IS. THERE'S NOTHING INSEL CAN DO ABOUT IT. He tries to downplay it, look calm, sound concerned, but not worried. That's only going to work for a little while longer. Very soon autism won't be just a health care issue. It's going to an economic crisis for this country. A massive dependent population of young autistic adults is about to descend on the U.S. Insel knows this. He quietly admits it, but he does it at places like MIT and NIH. Insel isn't on ABC News telling us the increase is real.
If I were in that audience, my question would be, When are you going to alert the American people to the tsunami that's coming?
Anne Dachel is Media Editor for Age of Autism.