Watch Live Streaming House Committee on Oversight and Government Reform Hearing of Federal Response to Autism
Fire The Deniers Starting with Dr. Tom Insel: Autism Epidemic Explodes on His Watch

Questions for Dr. Tom Insel from Autism Community

I don't knowWhat would you ask during the OGR hearing today?  Here are some questions from our colleagues.  Add your own in our comments.

1.    The Combating Autism Act has directed the NIH to spend over $1.64BILLION on autism research. Yet after close to 10 years you admit that you have come up with no new treatments for autism, and that you have not prevented a single case of autism.  Why should IACC continue and why should you continue in your position?  (Insels admission at last IACC hearing to Dr. Enayati at 6:20 https://www.youtube.com/watch?v=XMjFluo4Az4)

2.    The 2006 Combating Autism Act that authorized this massive expenditure and put the IACC in place is up for reauthorization in September.  If 8 years and a billion dollars didn't make a dent in the autism epidemic, but in fact watches in increase, then how much money and how much time do you and your colleagues believe that the American People should spend on your failed efforts?  Will another billion dollars and another decade only see a greater autism increase?
 
3.    It had been long believed that autism was mostly genetically induced, but in July of 2011, Stanford released a very comprehensive study showing that non-genetic factors played the greatest role in determining autism risk. This ground breaking study showed, that approximately 38% were due to genetic factors and 62% were environmental. (http://med.stanford.edu/ism/2011/july/autism.html)

In March of this year, the University of Chicago released a study that showed again that the environment was the main factor in developing autism. (http://www.uchospitals.edu/news/2014/20140313-autism.html)

Why is NIH spending money on genetic autism research at a 6:1 ratio over environmental causation research when you, yourself, have admitted that autism is mostly environmentally induced? This spending pattern flies in the face of all logic in light of the epidemic rise of autism. There are no genetic epidemics.


 
4.    Why does CDC’s most recent autism surveillance cover children born in 2002, well over a decade behind, and only begin surveillance in a population born in 1992? This lackadaisical pace of surveillance combined with the narrow time period of inquiry appears almost consciously designed not to shed light on the problem. The CDC’s feeble and illogical response to the autism epidemic lies at the root of the problem and has helped perpetuate what has clearly become a national emergency.
 
5.    Do you deny that 1 in 68 children born in 2002 being diagnosed with autism can be anything else but an epidemic of historic proportions? How much is this epidemic costing the US?
 
6.    What do you consider your personal accountability for the failures of the IACC and the CAA?
 
7.    Parents of autistic children have been witheringly critical of your leadership of IACC and national autism groups have repeatedly called for your resignation. What do you say to their concerns that the IACC is a dysfunctional group, composed of “public” representatives that are simply there to rubber stamp the failed policies of your NIH bureaucrats?
 
8.    What do you say to accusations that scientists are ruthlessly intimidated who don’t toe the official NIH line that autism is genetic and that reported increases are simply a result of better diagnosis?
 
9.    As CDC has testified that nothing is off the table on autism causation, including vaccination, as there are tens of thousands of parental reports of autistic regression following vaccination, as research is now coming in that does associate vaccines and autism, and as the VICP has paid autism cases from the fund and there is no published vaccinated v. unvaccinated research to look at the increased risk of autism in vaccinated children, is it not prudent, logical and just leave the choice on how to vaccinate a child in the hands of their parents and their health care providers and create a federal vaccine exemption?

10.    Why is autism not being discussed and researched as an outcome of a disease of the immune system, and subsequent treatments being pursued by IACC?

11.     Parent groups and medical professionals have independently developed many medical treatments and approaches to treating the underlying medical conditions that are believed to be causing autism behaviors for many decades, but despite thousands of reports of successes and research on their effectiveness, they remain labeled as "controversial" and out of the reach of most mainstream families and physicians.  What has IACC done to vet emerging treatments and get doctors educated on their effectiveness?  

12.    Why has there been no follow up to the PACE law review paper, looking at how many of the cases already paid out involving neurological injury have led to or included diagnoses of autism?
What follow up has taken place, to connect the similarities of injury and presentation of injury to assess; 1)possibly successful treatments; 2) possibly trending predisposition to injury from vaccine, ie familial autoimmune disorders or mitochondrial dysfunction, tylenol administration, vitamin D status, etc.
 
13.    Why has the court become so hostile to petitioners and their parents presuming a stance of faking it or lying when injuries and regression are so apparent and documented, especially when the court was set up and meant as a no fault program for those who are injured? injury is known for a certain percentage of individuals hence the reason for the court in the first place.  And why is there such a disparity and discriminatory stance towards certain diagnoses on the petition like autism?
 
14.    Why has the court not given proper notice to the 5000 omnibus cases to refile with their accompanying medical dysfunctions and regressions when seizures, encephalopathies and other medical contributors to regression, known to be adverse reactions, are present on their medical records? Why are these cases all decided upon by only 4 test cases, especially when one of these cases was taken out and compensated?
 
15.    Why has there been such hostility and delay towards paying petitioners lawyers limiting the number of lawyers who will take these cases and wait the many years before seeing any funds to continue on for their clients.

16.    Why was there never follow-up to what Dr. Bernadine Healy called for in 2008 on CBS--namely that we studied the children who were fine and then regressed? http://www.cbsnews.com/news/the-open-question-on-vaccines-and-autism/


17.  (Submitted by Rolf Hazlehurst) Mr. Insel,

I assume you are aware of the  indictment of Dr. Poul Thorsen , a CDC scientist who allegedly stole over one million dollars in funds which was supposed to be used to fund research into the issue of whether vaccines can cause autism.

I would like to read to you portions of that indictment.

Paragraph 2. "Beginning in or about 2000, ...CDC... awarded grant money to Denmark for research involving infant disabilities, autism genetic disorders, and fetal alcohol syndrome. The CDC awarded the grant to fund studies of the relationship between autism and the exposure to vaccines,.."

Paragraph 6. "In 2002, after CDC awarded the grant, the defendant THORSEN went to Denmark and became the prinicipal investigator, responsible for administering the research money awarded by the CDC to Denmark."

Paragraph 8. "From in or about February 2004 through in or about June 2008, defendant THORSEN submitted over a dozen fraudulent invoices, purportedly signed by a laboratory section chief at the CDC's National Center on Birth Defects and Developmental Disabilities, for reimbursement of expenses that defendant THORSEN claimed were incurred in connection with the CDC grant. The invoices falsely claimed that a CDC laboratory had performed work under the grant..."

Paragraph 9. "In truth, the CDC Federal Credit Union accounts were personal accounts held by defendant, THORSEN. He used the accounts to steal monel under the CDC grant."

Paragraph 10. "Defendant, THORSEN purchased a home in Atlanta, a Harley Davidson motorcycle, an Audi and Honda vehicles with the proceeds of his fraud."

Paragraph 11. " Defendant THORSEN obtained over $1 million from his scheme to defraud."

Now despite this CRIMINAL charge isn't it true that the 2004 I.O.M. Report to Congress, the Department of Health and Human Services and IACC's argument that vaccines do not cause autism is largely based upon the Danish Studies and the work of Dr. Poul THorsen?

When the primary investigator of a study steals over a million dollars of the research funds and uses the money to buy a house, 2 cars and a motorcycle rather than fund the reseach doesn't that seriously undermine the credibility of the study?

18.  Why is regressive autism not on the agenda? Why has there been no recommendations for halting, treating and preventing regressions? Why is there no research being funded by the IACC for halting regression due to medical comorbidities like seizure, inflammation and encephalopathies that lead to full blown autism? 

 19. Why aren't subtypes of autism recognized to pair symptoms to cormorbidities, and treatment of cormorbidities to symptom alleviation? Along with thousands of parental testimony, many studies corroborate these cormorbidities are happening in large numbers of the cases of autism. Do you have teams working on connecting all of these dots and if not, why? Are you gathering studies already done to develop a tiered treatment protocol system due to presentation and comorbitity?

 20. What research are you doing to gather information on familial immune dysfunction? What patterns have you seen? If not, why???

 21. Why have children who have recovered not been studied?

 22. What research are you funding on prevention? And Medical Treatments of comorbidities? What recommendations have you made to OBs and pediatricians for from that research? 

 23. Why is the greatly rising numbers and counting being watered down to claims of better diagnosing and higher functioning when there is no research to back that claim? 

 24. Why hasn't the IACC made attempts to educate the medical community on the many comorbidities to look for in cases autism? Especially correlated to severity. 

 25. Why is there such a lack of regressive autism representation on the panel? 

 26. Why are parent's observations not an integral part of the discovery process, especially for those that witnessed regression after adverse reactions to vaccination. Is there discrimination on the panel against these testimonials because of their observations of vaccine involvement?

 27. Why are the testimonies sent in to the IACC from stakeholders not made public? 

28. In the fall of 1998, the CDC descended upon Brick Township, New Jersey (population approximately 70,000) and within 4 months were able to count every child aged 10 and under, compile and analyze the data for how many had autism, and present the results of the study, which they did in January of 1999.

In that study, not a single child aged 9 or 10 in the entire township had a diagnosis of autism per the CDC (Sallie Bernard email), and yet, over 30 children aged 4 and under did. The CDC then claimed this was not significant.

A few questions:

A)  How is it possible to come to the conclusion this is not significant?

B) If it were possible for the federal government (through the CDC) to canvas, study, and report on 70,000 people with regard to the incidence and prevalence of autism spectrum disorders of varying birth cohorts in a matter of months all the way back in 1998, how is it impossible to do this now? And why haven't we?

C)  Why DON'T we want to know how many adults have autism?

29.  It can not be disputed that there are tens/hundreds of thousands of parental reports, both here in the U.S. and worldwide, implicating vaccines in the subsequent development of what the medical profession labels "autism".  As such, and considering that the U.S. government has refused to commission an independent vaccinated vs. unvaccinated study to compare the health, development, and well-being of the vaccinated vs. the unvaccinated, both short and long term, it is prudent, logical, and imperative to immediately ban vaccine mandates in the U.S., in all 50 states, and make vaccines completely voluntary, and not a requirement for daycare, school, employment, or the military. Then, and only then, will things begin to change.  

30. How can two parents with ZERO family history of autism produce 3 daughters (GIRLS) with severe autism – despite, proper prenatal care, unmedicated deliveries, breast feeding, copious social interaction and every upper middle class advantage. This family has been WIPED OUT by autism. They deserve answers.

31. Question #1:  Do you definitely know what causes autism?  If no, proceed to question #2.

Question #2:  Would you place your right hand on the Bible and answer before God and man this question:  Do you know for a fact that vaccines do not cause autism?  If no, proceed to question #3.

Question #3:  Then why do you refuse to listen to tens/hundreds of thousands of eye witness accounts by intelligent parents who report that their child(ren) developed/regressed into "autism" following from their routine childhood vaccinations?

Question #4:  Explain to us why it is not prudent and sensible to immediately halt vaccine mandates until we know more about the short and long term consequences of vaccines.

32. In July of 2011, Stanford released a very comprehensive study showing that non-genetic factors played the greatest role in determining autism risk. Before this study it was believed that 90% of risk factors were due to genetics and only 10% were influenced by the environment. This ground breaking study show close to the exact opposite, 38% were due to genetic factors and 62% were environmental. 

http://med.stanford.edu/ism/2011/july/autism.html

In March of this year, the University of Chicago released a study that showed again that the environment was main factor in developing autism.

http://www.uchospitals.edu/news/2014/20140313-autism.html

Mr. Insel, can you tell us how much federal research is being spent looking at genetic factors vs. environmental?

After the July 2011 study from Stanford came out, why wasn't there a major shift in autism research towards the environment?

Question #2

Whose responsibility is it to respond to the autism crisis in America? Who is in charge?

Questions #3

Mr. Insel, what is your full time job? Do you feel being in charge of managing the autism crisis through IACC should warrant more than a part time status? Isn't that effort deserving of at least 40 hours of work each week?

Question #4

Thousands upon thousands of parents have reported changes in health and development after a vaccine reaction. The VICP has compensated more than 1300 individuals for brain injury, many of those who are brain injured also hold an autism diagnosis. Why haven't those individuals been thoroughly studied to see what their genetic vulnerability is to react to vaccination?

Add your own questions in our comments.  Thank you.

Comments

Billie Joe

1. Please do a study on the gut before and after vaccines. Simple enough with DNA comp stool exam through metametrix. Cheap enough too.

2. Also, start labeling the sources of studies... who paid for them, who performed them before you site them. You look pretty suspicious when you don't.

3. Start advertising that the CDC has a website that tells people who should and should not receive vaccines. Our doctors did not alert us to the list or the problems with allergies. And I don't know anyone who has a doctor who has done that.

4. Lastly, please get assessed by a good and decent psychiatrist to evaluate whether or not you have a sociopathic diagnosis that prevents you from truly caring about what is happening to the children's bodies from vaccines. Your actions speak much louder than your words.

Roger Kulp

PANDAS Mom

Here is a pretty good example of what I mean

http://pandasnetwork.org/family-history-table/

I have read what Susan Swedo says about Lyme.She says Lyme is PANS too,but it might be different than Strep related PANS in the way you get it.

How many times have you seen mothers with MS posting here,talking about their kid with PANS.

MS is autoimmune

Kristine

Who selects members to be on the IACC and why would they select a blogger with HFA over a Harvard neurologist?

Benedetta

Roger; Jane Burns is a self centered - research doctor that has made her niche and living off of Kawasakis - she has no intention of getting involved in vaccines of finding the real cause of Kawasakis any more than Tom Insel is going to really study vaccines as related to autism.

This wind thing -- she started about 4 or 5 years ago. She - the Ol'e Wise Woman; all alone - by herself noticed that Kawasakis appeared mostly in the - Fall of the year, just as the winds blow from the west to the east ---

I would imagine that kids being vaccinated for school in the Fall might have more to do with it-- but I am not the all knowing wise Jane Burns.

As far as wind -- I have worked and studied in the field of environmental science. Winds may carry from crop to crop a few miles a year -- that is a field full of fungus contaminated crops -- and only if the weather is right.
But Oh but t there is not way winds are going to carry an organism and be alive all the way over from Japan to California or Kentucky for that matter.

barbaraj

Why do they use inductive reasoning for the denial of vaccine causing autism, it's about as far from science as one's reasoning can go. wiki'
Inductive reasoning is inherently uncertain. It only deals in degrees to which, given the premises, the conclusion is credible according to some theory of evidence.

PANDAS Mom

"PANDAS/PANS is pretty much an inherited disease."

Roger - I don't understand this claim. Could you please explain what you mean?

My son has PANS, but neither my husband nor I have/had it. What he did "inherit" from me is Lyme Disease, in utero. After 9 years of undiagnosed Lyme, he had a sudden onset of "PANDAS," later correctly diagnosed as neuro Lyme.

barbaraj

with all due respect, I have been following KD for years, and every once in awhile we have "news" that claims to have found the culprit, including a few studies that make the same claim. Rug shampoo, dust mites, staph, strep, wild measles, have all made front page news as the "cause" over the years, and while there may be a connection to some or all of these things, I wouldn't close the page. It did make the insert of the rotovirus vaccine..let's keep looking..or find out if these strange fungi are in vaccines, as with my little guy who was given the HIB vaccine with bacillus cereus. all the more reason to clean up vaccine manufacturing.

Roger Kulp

Wonderful group of questions.Somebody needs to try and interview Insel,and get him to answer as many of these questions as possible.

I never realized it in the past,but I have come to assume by genetic,most researchers have been looking for genes that would directly cause the behaviors that can be diagnosed as autism.No wonder they have not found anything.

Most people may have realized this all along,but I did not.By genetic,I always thought of an inherited disease,either metabolic or immune,that might result in autism,but the autism,is not the primary condition.

PANDAS/PANS is pretty much an inherited disease.

Benedetta,Kawasaki Disease has recently been found to be most likely caused by a (mutated?) Candida or fungal infection.A fungal infection that did not exist until the 1960s.The theory is it started in China from changes in agricultural practices.
http://www.channelnewsasia.com/news/health/winds-blamed-for-spread/1112910.html
http://www.fashiontimes.com/articles/7253/20140520/cause-of-fatal-heart-disease-travels-by-air.htm
http://medicalxpress.com/news/2014-05-source-kawasaki-disease-foundcondition-triggered.html

Kawasaki Disease has been linked to brain damage and behavioral problems,because of reduced blood flow to the brain.
http://www.biomedcentral.com/1471-2431/5/14
http://www.ncbi.nlm.nih.gov/pubmed/21716013

You could easily see where it might cause autism.

barbaraj

Benedetta..My friend lost her son to a stroke at age 7 months, five days after his dtp, his Kawasaki diagnosis was made at autopsy. My daughter shortly after her measles vaccine was diagnosed with ITP, followed in weeks by Kawasaki. The doctors KNOW ITP follows mmr, yet they can't seem to make the connection to Kawasaki or to the strokes. Pediatr Hematol Oncol. 2003 Dec;20(8):597-601.
Thrombocytopenia in Kawasaki disease: a risk factor for the development of coronary artery aneurysms.
They look at the heart and vascular system yet not the effect on the developing brains of these children.I like your question and hope someone listens.

Benedetta

My request is looking at Kawasaki Disease as the root cause of the brain injury called autism.

Since your main job is to deflect anything suggesting it is the vaccines --I suppose there is no possibility that the IACC committee would look into vasculitis though?

Tom Insel your real job is to deflect anything away from vaccines. So I am sure you already have your finger on the pulse of every emerging danger that might reveal this secret.

So I suppose you already are aware that:

The Kawasaki Disease websites, foundations and organizations are starting to demand that the CDC do their job and track how many cases of Kawasaki Disease is out there. ---------

Then again maybe not so much danger - nope not to worry for most cases of Kawasaki Disease even the most typical form is very often not diagnosed, or misdiagnosed .

Most cases of Kawasaki disease is really the atypical form, and may be much more common and that form is certainly seldom diagnosed.

So, not to worry --
So considering how safe you are -- could we look into vasculitis as the beginnings of a brain injury that leads to autism?

Hera

1. Could you please do a study showing whether children who have high fevers and seizures following vaccination have a greater risk of autism than those who don't react badly to vaccines?
There are various biomedical treatments that have not been studied.
You have the money to study these various treatments and to see if parental reports of improvements are accurate, and if there is a particular subset of people with particular autism symptoms ( regressive autism, autism with GI disturbances) that they should be used for.

As it stands imo the research you have spent billions of dollars on has been studies of very little practical benefit to anyone.
As it currently stands, I am for disbanding the IACC and using the money instead to provide respite care etc for families with autism.

barbaraj

I just have a "mommy" question. You people are certain it's not mercury, viruses, aluminum,antibiotics, animal dna, human diploid cells, you all know this as fact? Or do you somehow know that these things are safe if injected, yet any or all loosed in our environment could be considered to cause autism if inhaled, absorbed dermally, or ingested? From basic toxicology tests, you all know the absorption rates of chemicals in animals, and know that it would require more product/toxin to poison in any and all routes as compared to injection.If you don't understand first year toxicology how can you provide any answers to autism and it's toxic environmental connection at all? To say ,autism is not caused by vaccines is a blatant lie, because you can't know this.And you can't know this because these are the basic science questions that could be the easiest to answer,and that science is being blocked.The latest report I read said, "there will be no animal studies".

Eileen Nicole Simon

My son who is autistic will be 52 years old in September. Having spent most of my life trying to make sense of his difficulties with language, I can tell you that autism research has been stalled for at least 60 years. Evidence of impairment caused by asphyxia at birth of nuclei in the brainstem auditory pathway (Scientific American, October 1969), should have become the focus of research on maturational failure of the language areas of the cerebral cortex.

I sent the following message to Representative Issa yesterday:

Thank you for holding a hearing on the Federal Response to Autism Spectrum Disorders. I hope you will schedule more hearings, and that parents of autistic children will be allowed to speak.

My autistic son is 51 years old, and I have spent nearly 50 years learning everything possible, mostly about language development.

Language is the distinctive feature of the human species, and failure to learn to speak must be viewed as a serious handicap. This is not just a difference as so-called "self advocates" want to claim.

"Aphasia" should probably replace "autism" as the handicap that requires research. Please ask Dr. Insel about this. I have been attending IACC meetings since 2003, but my comments are always ignored, as are those of all other "stakeholders."

Eileen Nicole Simon, RN, PhD (Biochemistry)

Jillba

Is there anyway to record this hearing? Will it be on C-Span 1, 2 or 3?

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