Katie Wright on IACC Vs. GAO Report
Congressional Hearing on Federal Autism Policy Today

Best of: Examining Dr. Tom Insel's Fine Clothes

Emperor's New Clothes Henry Justice Ford Note: We are running a few post about Dr. Tom Insel, IACC and the Federal Response to Autism since there is a hearing today in Washington DC. You can watch via livestreaming http://oversight.house.gov/hearings/

By Anne Dachel

On Monday, Jul 11, 2011, Dr. Thomas Insel, chairman of the Interagency Autism Coordinating Committee, testified before the U.S. House of Representatives Energy and Commerce Subcommittee on Health in support of the reauthorization of the Combating Autism Act.

I listened closely to what Insel had to say about autism and I transcribes his comments below.  I compared this testimony to what Insel said to Congress about autism in 2009. (See my story, Age of Autism: Thomas Insel and The Really Big Autism Lie)

Back in August of 2009, Insel wasn't sure if the rate of autism was really going up or not.  He talked about early diagnosis and early intervention.  He talked about genetic research.

In December, 2009, the autism rate officially went from one in every 150 children to one in every 110 kids.  That same month, speaking at MIT, Insel said, "I said before this isn't just genetics... There have to be environmental factors."

By the spring of 2010, Insel was really getting concerned about the impact of autism. At the National Institutes of Health, (Age of Autism: Dr. Tom Insel on Autism) he said, "Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen." In Insel's own words, "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."

So what did Insel have to tell Congress on July 11, 2011?  What advances have been made since 2009?  As far as I can tell, Insel had nothing substantial to report.

If I were a member of the Health Subcommittee, I'd have to wonder why it made sense to continue the work of the IACC.  Insel couldn't give any specific answers about the cause of autism.  He talked at length about the genetics involved.  He cited all the organizations and agencies focused on autism.  He was quick to say that while environmental factors may be at play here, he had no idea what they might be.  Regarding the possible triggers he made a vague reference to things like fertilizers, antidepressants, and prenatal exposures.

Evidently, no one on the subcommittee had read Insel's previous testimony because they seemed quite willing to accept that when it comes to autism, no one knows anything.

Several questions were asked about how autism funding was being spent.  Members wanted to know if they're getting their money's worth. And there were expressions of concern about the lifetime care cost of $3.2 million cited by Insel.

Having listened to hours of Insel's speeches on autism over the last few years, a number of things stood out to me.

First of all, Insel described autism as "an urgent national health priority" in front of the subcommittee and yet in the IACC's Strategic Plan for Autism Spectrum Disorder Research published in January, 2009, autism was called "a national health emergency," 

Insel gave the rate as one in every 110 eight year olds today, which wasn't exactly correct since that number comes from studies of eight year olds in 2006.

Insel emphasized that we should talk about "autism spectrum disorders" rather than "autism."   His demeanor was positive and he smiled a lot.  He struck a perfect balance; he sounded concerned about autism, but not really worried.  He made it clear that advances are being made at the same time he couldn't name one.

Autism may strike one in 110 kids, one in 70 boys, but the clear message from Insel was that everything is under control, we just need to keep on doing what we're doing because we're getting close to finding answers.  And surprisingly, congressional members at the hearing didn't demand answers.  They listened to the same old recitation of the definition of autism that doesn't come close to describing what desperate situations thousands of families with autistic children across this country live with and they willingly accepted that experts still don't know what's happening our children.

It was obvious what Insel didn't talk about in his testimony.  There was no mention of the growing concern over a link between the ever-expanding vaccine schedule and autism.  Not a word was said about the children were healthy at birth and who suddenly and dramatically regressed following routine vaccinations.  At the same time he ignored the vaccine controversy, Insel couldn't name any environmental factor they definitely link to autism. 

Regarding the epidemic rate, Insel said they "were amazed at how frequent [they're] seeing autism."  Insel never once used terms like "alarmed," or "crisis." 

There were hints that Congress was concerned about what autism is going to cost this country. Insel, referring to Ganz's 2006 Harvard autism study, told members of the committee to multiply $3.2 million by 500,000, which was his estimate of the number of autistic people who will be in need of extensive services.

Incidentally, that comes to: $1,600,000,000,000--something no one bothered to mention. That's a pretty hefty price for disorder that no one can explain.   

Insel made a reference to the lack of services for adults but had no real information on how critical this need is.  There was no mention of the waiting lists that are growing exponentially. 

Finally, while Insel might go to MIT and NIH and say things like 80 percent of autistic Americans are under the age of 18 and that "we need to prepare for a million people who may be in need of significant services," in Congress he sounded more positive.  He focused on all the effort being made to find answers for this baffling condition. 

Everyone in the room seemed satisfied that, as one congressman said, Insel was giving them "state of the art" information about autism.  I can only expect that on Insel's next trip to Capitol Hill, he'll be saying the same thing.  I wonder if members of Congress will still be praising Insel's work.  Will the numbers and the cost worry anyone by then?   

Listen to Thomas Insel's testimony: HERE

Insel: "Most people are hearing more about autism than they might ever have imagined."

"Two decades ago, ...when I was in medical school, we probably didn't hear much about autism, but at this point, we are amazed by how frequent we're seeing autism in clinics, particularly in pediatric clinics, neuro-psychiatric clinics. The CDC's latest prevalence estimates are one in 110 children, that's one in 70 boys, that's amongst the eight year old cohort today being diagnosed with autism spectrum disorder. And it is therefore that the disorder has become an urgent national health priority.

Insel talked about how they encourage public participation, written comments, public comment at their meetings, and town hall meetings. He says there's a high level of transparency." The IACC "ensures a diversity of ideas and perspectives on ASD are brought to the table."

While they're only required to meet twice a year, Insel said that the IACC has been meeting about 16 times a year.

Insel: "I think we've seen some remarkable progress in the identification of how common ASD is within communities, how ASD develops, how we can detect it at increasingly earlier ages, and what types of interventions are most effective."

Insel claimed that though there's been "unequivocal progress, much work needs to be done. Reauthorization will be critical for continuing this momentum and this stability over the IACC over the next three years."

Rep. Pitts asked Insel about risk factors for autism.

Insel talked about longitudinal studies of exposures "that may increase risk." He was quick to add, "We also have increasing evidence for the importance of genetics as a risk factor. Perhaps 15 percent of children with a diagnosis of autism spectrum disorder today have a genetic mutation. Many of these we didn't know about even six month ago. ...Probably the most important area going forward is understanding how these genetic and environmental effects interact."

Insel then went on to describe how "exciting" it is that they may be able to diagnosis autism "before the second birthday." He was very hopeful about diagnosing as early as 14 months.

Next Insel talked about the needs of those "transitioning to adulthood." He said they haven't been really focused on this area before, but they've heard from the public and now they know this is important because services aren't there for young adults.

Insel said that services being provided for those with autism aren't the same everywhere in the country and he described the need for better services as something "urgent."

Rep. Pallone: "What kind of environmental factors are we talking about?"

Insel, talking about the twins study, said that the study showed more of the risk of autism is environmental. Then he digressed into talking about disorders that are "absolutely genetic" like fragile X. "There may be some, we don't really know the number, in which the disorder is really generated by environmental factors, yet to be determined. But there's a lot of research going on to try to track down what those could be. Much of the data that we have so far, and I think we're still in the early days on this, has been pointing to factors that impact second trimester, so prenatal or early post-natal factors in some cases. And there's a range of them that are coming particularly out of the UC Davis effort that's funded by NIH, EPA, and CDC. ...One of the things they're looking at, not only the anti-depressant study you're already mentioned, but there are questions about environmental exposures to certain kinds of chemicals in fertilizers, there are questions about medications, ...whether certain kinds of illnesses prenatally might predispose and be a risk factor. The bottom line is WE STILL DON'T KNOW. AND WE DON'T KNOW OF ANY FACTOR THAT GIVES US MORE THAN A SMALL AMOUNT OF THE RISK THAT EXPLAINS THIS INCREASE."

An Ohio representative asked why autism was once a rare disorder and now one in 110 children have it. "What were those kids being diagnosed with before?"

Insel, smiling broadly: "That's a good question. We don't know how many of these children were diagnosed with some other childhood disorder... One of the things that's changed over time is that you can now give a diagnosis of autism spectrum disorder and have one of these other diagnoses. Prior to 1991, that was not an option. But it's still not clear that all of these children had something else. The question that we really need to grapple with is whether this a real increase or not. I think that most people that have been in this field, as I have for more than two decades, would say it's not simply changing diagnosis, not simply greater awareness, not simply ascertainment that's better, but that there is a true increase, as there is in asthma, type I diabetes, food allergies. There more people affected with autism today than there were two decades ago."

Next Insel talked about drugs for autism. He admitted, "We don't do very well."

Insel was asked about happens as these children age out.

Insel: "Generally, children with autism become teenagers with autism, become adults with autism. They may adapt, they may be able to function better. Many of these children are able to go through regular school system, but only with a great number of supports, often a very intensive and extensive set of behavioral therapies. The average cost estimate over lifetime is about $3.2 million per person on the spectrum."

A KT Rep. asked about what we exactly know about autism.

Insel: "Go where we have the most traction and right now, that's in genetics." ...Insel talked about the human genome study. But that's only going to explain part of the problem. He said they're looking into what could be the environmental factors that are affecting those people who are "genetically susceptible."

"As I was saying before, we have a very short list at this point because this is in some ways a relatively new area of investigation and to be honest about it, we don't have the traction in finding environmental factors that we do have in finding genetic sequence changes. So this is a long, expensive, and difficult process that mostly deals with large population studies and goes after correlations, So it's not quite the same as we've been doing in genetics. That said, there are a number of projects underway. Some of which are looking at younger siblings, ...some are looking at large birth cohorts, ...some are looking in great detail at environmental factors that uh across both pregnancy and the first three years of life. All of those, when done longitudinally may begin to flesh out some signals, but right now the signals we have a relatively weak. They may show, like with the antidepressants perhaps a two, maybe threefold increase in risk, but uh...nothing like the 70 fold increase in risk that you have for having an identical twin."

Insel was asked about where he thinks all this is going.

Insel said we'll probably end up using "the power of genomics in actually finding environmental factors."

"We may be able to find the footprints of environmental exposures by looking at the genome long after they take place.  We're not there yet, but we're now getting the tools, and by now, I mean in the last year of two, we have the tools to begin to do this with great precision and great throughput. And at that point, I think we'll be able to make a little more progress than we have to look for environmental causes."

Insel mentioned how inspired he is by autism parents.

Insel was asked about the research at the Autism Centers of Excellence. This research "has been described by some as being redundant and too focused on genes and diagnosis research and not on... things like auto immune problems. In addition, there's concern that administrative costs are too high and they take away much needed funds from research."

Insel talked about the 11 Autism Centers of Excellence. He claimed that these places are looking at environmental factors, especially long term exposures. He praised the IACC for coordinating autism research efforts.

Insel went on at length about what the term autism spectrum disorder means. He talked about how it's lots of disorders "under this disorder."

One representative asked Insel about the "spectrum" --people who "may have gone through life always thought to be a little odd but now they're actually diagnosed." This was followed by a question about the cost of $3.2 million. "Was this for someone who with "full-blown autism?"

Insel said, "Yes."

Insel was asked how many people with autism were going to cost this much to society. He couldn't give an answer at first, but said 50 or 60 percent of those with autism fit that category. He also added that they "would have been identified 20 years ago because they don't have a subtle problem."

The next question was, "What is going to be the cost to society and what is the potential of early intervention to diminish that cost?"

Insel talked about how important early intervention was. Then he made a stunning statement:

"The cost to society which we've tried to model out in various ways, ...I can tell you that the $3.2 million on average ...uh you can multiply ...times... the 700,000 PEOPLE who are on the spectrum, it's fair to say somewhere around that 500,000 are going to be on the severe end of the spectrum."

Next one member thanked Dr. Insel for the work that IACC has done over the last decade.

Insel was again asked about the expenses of the Centers of Excellence and their expenditures. Insel talked about funding that involved hundreds of millions of dollars.

One congressman said, "There are those who say we're spending more for overhead than we're actually getting in research."

Insel said fifty percent of spending went for "overhead."

Insel finished by talking about the biology of autism and schizophrenia and about the "urgent need for medications" for autism. Finally, he focused on the "successes of the IACC." In the last minute and a half he tossed out terms like sleep disorders and GI problems connected with autism "that are really quite common."

"That concludes our questioning for the panel, very excellent panel."

Anne Dachel is Media Editor for Age of Autism.


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