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An Elaborate Fraud, Part 3: In Which the Mother of Two Autistic Children Demands Accountability From the British Medical Journal

House Sub Committee Examines Dr. Tom Insel's Fine Autism Cloth

Emperor's New Clothes Henry Justice Ford 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.

Comments

Cherry Sperlin Misra

To Maurine Meleck, Please correct me if you think I am wrong, but my impression is that the freeway research was actually a support to the mercury hypothesis of autism causation. My thinking is that if the glutathione proteins are engaged in removing the toxic substances that the body inhales from the freeway air, they wont do a very good job removing the mercury which comes in through vaccines, fish, etc., and the mercury will remain to do its damage.

Rs Dad

FIFTY percent for overhead?!!! How can anybody get away with that? I'm getting hammered at work by my customer for eight percent!

Heidi N

Congress probably wasn't expecting anything from Insel about autism advances because the world as a whole has stopped expecting medical advances. People just accept MS, Muscular Distrophy, etc. to be untreatable, and that there is nothing that can be done. Because us parents of children with autism are all getting together, we are doing something. My kids are now recovered. So, what I have to say is, I wish the government would spend no money on autism research because they just create a wasteland of wasted research that distracts from the real healing that is actually going on. Thousands have been recovered. Seek out those, and learn from them. They actually have answers. But, I do see your point, these governmental agencies are doing a despicable job for the amount of money they receive, and the ones giving them the money, Congress, is allowing it. We need to stop handing out money. Often it does more harm than good.

Media Scholar

In my view, ASD is the AIDS of the 21st Century.
-------------------------------------

Well......

http://youtu.be/5tM8gk8C69M

Benedetta

Well, I see that the good Dr. Insel plans on it taking years and years, and years and years to find ---
That there is for sure an epidemic, and meanwhile he is pretty sure there is.
That the incidences of autism is really rising, and he is pretty sure that it is.
That there is an environemental cause, and it sure looks like it is.
That further genetic studies are important though because they can someday pinpoint what those environmental causes are.
That kids with autism will be dignosed much earlier than ever before.
That it will take money, honey - lots of money from the tax payer to help not just kids but the adults with autism.

Job security is what Tom Insel is looking for, and he is doing a great job.

My daughter is a nurse for kids, teens, and adult at a psych hospital.
I want to tell you for her this is just great news, talking abotu Job security for her toooo - that is if she don't get any more flu vaccines or she will be joining her patients very soon.

So, I think it will be safe for her to go ahead and get that nurse practionier degree - because it looks like the money will be pouring in.

And they say the economy is bad - you just have to know where and what area of society to look at.

cmo

I think what Dr. Insel is trying to say is that...

Since the 2004 IOM conference where they demanded everyone to stop looking at vaccines & Autism

and the Simpsonwood meeting where they covered up that fraud,

and the Hannah Poling case where they sealed all the vaccine records.... they have been able to find a damn thing the past 11 years or so...

Cherry Sperlin Misra

Joanna, note that the two doses of mercury-laden flu vaccines are to be given at 6 and 7 months, so it is quite likely that some kids will be autistic before 14 months. In fact it will be easy to make it appear that they were actually autistic from birth, which suits the drug companies very well- Not the fault of their vaccines- no siree- Go check out the "environment" in the womb . We could easily pass another decade on that useless research.

Angie

Thanks for a great recap! Is there a list of attendees who where there (our elected officials)? I would love to send them some proper information, because God knows Insel is FAR FROM "full/complete/ and certainly FAR FROM up to date" with his info presented, especially sending them comparative info from his last testimonies as well as what a whole bunch of nothing goes on in those 16 IACC meetings per year!!!

I feel sorry for those officials who really CARE and want to ask "the right questions" but get people like Insel answering them and them look upon him and the IACC panel as THE BEST EXPERTS....

Makes me want to puke! Anyway, anyone have a list of the officials who attended? Thanks!
Angie
PROUD MOM to Ethan, Alex, and Megan

Jeannette Bishop

Anne, I wanted to add thanks for listening and reporting on this. I don't know how it is for most, but I would have to view this over several times to make sure I didn't miss anything noteworthy in the frequent overwhelming moments of being underwhelmed. Thanks again!

Bob Moffitt

@ Dan E. Burns

"The IACC, unless renewed by Congress, sunsets in September 2011. That would be a lost opportunity. This committee is not just “their” forum, it is “our” forum too"

I hope to God I am wrong .. and .. you are right .. that the IACC deserves to be recommissioned in September.

However .. being an avowed cynic .. I remember a story I read about Lydon B. Johnson .. reportedly a consumate "old school" politician.

LBJ was in the process of forming a committee to investigate a very bitter, extremely contentious, controversial issue .. and .. he nominated someone to sit on the committee who was his fierce political opponent. When his aide asked "why the heck would you want him on the committee? ..

Johnson responded: "It's all about control. I would rather have him inside the tent p.....g out, than outside the tent p......g in"

Eileen Nicole Simon

The brain impairment underlying developmental language disorder should be the research priority for the IACC. The auditory system is most vulnerable to toxic substances, or any factor that disrupts aerobic metabolism.

The seminal paper written by Seymour Kety in 1962 on blood flow in the brain should be read by everyone, and members of the IACC hounded until they read this paper, and discuss its implications: Kety SS. Regional neurochemistry and its application to brain function. Bull N Y Acad Med. 1962 Dec;38:799-812.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804882/?tool=pubmed

I will continue to try to point this out until someone pays attention. So far all of my attempts to communicate with members of the IACC (in person or written) have been rebuffed.

Cassandra

"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."

Interesting that this quote comes from Insel. Is he trying to tell something to the politicians?

Jeannette Bishop

So, really good "traction" in genetics? Longitudinal studies of exposures "that may increase risk?" But whatever is going on, so far the cost only looks to be about 1.6 trillion--that's only a little more than a tenth of the national debt--so well...just so no one is surprised, or upset, that's the concern, I mean autism is a concern...don't talk about the big 100 pound _________ in the room...don't want to go there...and we've only spent half the budget on compiling and reporting these results, and well...we really need more drugs!

Maurine Meleck

Insel is so full of hot air and it is just sickening.So much easier to blame the freeways(my all time favorite environmental cause) Thanks Anne. Sure wish you could replace him on the committee.
BTW Benedetta-birth control pills were in full use starting in the 60's.
Maurine

Vicki Hill

I fail to understand this push to diagnose autiam earlier and earlier. Do they really think that getting a diagnosis at age 14 months rather than age 18 months is going to change the outcome?

As to the lifetime cost, just because a person isn't on the severe end of the spectrum doesn't mean lifetime costs won't be significant. The vast majority of adults with ASD are unemployed (or signiicantly under-employed). Many cannot live on their own without supports. Yes, even many who manage college can't manage the workplace.

Dan E. Burns - SavingBenBook.com

Four empty slots.

The Interagency Autism Coordinating Committee (IACC) meeting in Washington, DC which I attended on July 19, 2011, surprised and challenged me. I gave a presentation during the Public Comment time slot on the village for adults with autism that the Autism Trust USA, which I chair, is building near Austin, Texas.

Tom Insel greeted me warmly, introduced me to key members of the committee who share my interests in transition to adulthood, and offered me extra time to speak. The surprise: IACC is not a committee of ogres. It is a committee of “frienemies” -- partners who are simultaneously rivals. I saw Lynn Redwood working shoulder to shoulder on the safety subcommittee with Alison Singer. I saw Ari Ne’eman advocate for a teen with autism so she could testify – movingly -- about her experience being bullied in school. Another surprise was that there were 30 minutes allowed for comments. Five precious minutes per commentator. But only two members of the public – Jim Moody and I – presented.

Folks, I’ve marched in AIDS candlelight vigils. My gay friends chained themselves to the White House fence, marched by candle light from Castro to the San Francisco Civic Center, went to jail, and turned the AIDS epidemic around. I’ve seen the power that committed individuals, working in solidarity, can achieve. I’m proud to have been part of that movement.

In my view, ASD is the AIDS of the 21st Century. That brings me to the challenge. There were four empty slots on the IACC public comment agenda that could been filled by AoA moms and dads … asking questions about vaccination, regression, and recovery. Parents, where are you?

The IACC, unless renewed by Congress, sunsets in September 2011. That would be a lost opportunity. This committee is not just “their” forum, it is “our” forum too. I urge you to contact Lina Perez at iaccpublicinquiries@mail.nih.gov and get on the agenda for the next full committee meeting, if there is one. Let’s fill those four empty slots. We can change the world.

Joanna

"He was very hopeful about diagnosing as early as 14 months." Yeah, good luck with that. I wonder what they will think when so few babies were diagnosed at 14 months, and then so many regress in the months following. Though who knows where the vaccine schedule will be then...

Kristine

Urgent need for medication, huh? Why can't we just leave the funding for that up to the pharma companies? Isn't that what they say about how allllll this money they charge/make is because of R&D expenses? (When we all know it's that superbowl ad.)
If autism was homogeneous and simple, there would already be medications that work. It's a pretty big market after all.

While the numbers of autism "amaze" Insel, I'm amazed at the small number of people who give a crap about this epidemic. Most people I know (those who do not have a child w/ au) don't even give it a second thought. They don't think about the epidemic. Let me repeat: They don't even think about the autism epidemic. When will they start worrying about it as I do every night as I try to fall asleep? I'm just not sure it will ever happen. I don't even think the aging of the population and the cost will make people wake up. Though I'm sure we'll see more of this attitude:
http://articles.boston.com/2011-07-11/news/29761905_1_ssi-disability-program-supplemental-security-income

The two largest mental impairment categories - attention-deficit hyperactivity disorder and speech delay - grew by 6 and 12 percent, respectively. The third-largest such category is children who qualified based on autism spectrum disorder, and that grew by 13 percent in the past year.

US Representative Richard Neal, a Democrat from Springfield and an outspoken critic of the program, said the new data reinforce his belief that the children’s SSI program, although it helps many low-income families who have children with serious impairments, may be evolving into a loosely run alternative welfare system. He said veteran school officials in Springfield and other poor urban areas continue to complain to him that many indigent families face incentives to label their children disabled, or to put them on psychotropic drugs, “simply to secure the benefits.’’

JHouston

This guy is a snake oil salesman. And they accuse parents of being desperate!!

GH

'there are questions about medications....'

So that's that covered.

Benedetta

There are all kinds of things on the internet connecting birth control pills to hormones problems and then linking them to autism.

The birth control pill appeared just about the same time as autism numbers started to rise.

That and about everything else that makes modern society - modern!

Never mind that I and a lot of parents are out here in the wilderness saying - we witnessed the environmental cause and it was after the a vaccine was given, and given again and again.

Harry H.

He actually admitted that 50% of the research money goes to OVERHEAD?

No wonder they don't want to find a cause, or a cure.

There are thousands of worthless autism researchers stealing millions from the taxpayers with nothing to show for years of work. That my friends is the definition of a "racket".

Suspicious

"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."

Interesting... What EXACTLY are these people up to? And how exactly did he get the figure 500,000 have true autism. How does he know THAT. And why is he focusing on money when people with autism are seriously suffering. Sounds like some sort of human experiment to me.

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