October 19, 2009

Autism Chair Thomas Insel Refuses to Ride in an Elevator With an Autistic Child

"I'm not riding up with them" - Dr. Thomas Insel

On April 17, 2007, Holly Bortfeld attended an autism hearing in the Senate Appropriations Subcommittee run by Senator Tom Harkin. At that hearing Dr. Thomas Insel, Director of the National Institute of Mental Health, now current head of the Interagency Autism Coordinating Committee, was there to testify.

Beforehand, Ms. Bortfeld, was waiting with her 11 year old son Max, who has autism, at an elevator on the way up to the hearing. When the doors opened they got on.  After they did, Thomas Insel and a female companion approached and entered the elevator just before the doors closed. Ms. Bortfeld reports that once they were on the elevator together...

"...Max stimmed. Insel looked at him, looked at me (yes, he had his little name tag on, so he knew that I knew he was) then he hit the open door button and ushered his coworker off. As the doors were closing, he said "I'm not riding up with them", looking at my son."

The head of the National Institutes of Mental Health refused to ride an elevator with a child with mental health issues.

...again for clarity and perspective on this episode...

The chair of the Interagency Autism Coordinating Committee will not share an elevator with a child with autism, on the way into an autism hearing.

This odious behavior is not one of a healer committed to the well being of the disadvantaged or disabled, it is the behavior of a bigot.

It is just one more example of the pattern of astonishing contempt that Insel shows towards the autism community, as he routinely leaves IACC meetings early, dismisses the input of the autism community, and chairs an autism committee with some completely inappropriate appointments, like...

  • Alison Singer, who was asked to resign from Autism Speaks because of her behavior on the IACC, but is still considered qualified by Insel to be on the committee, presumably because she now runs an "autism organization" out of her basement that she subsequently founded with vaccine maker Paul Offit (who admits he has never treated a child for autism), and despite the fact that she is widely disliked by both members of the neurodiversity community and the biomedical community.  (Or perhaps because Singer went to college with HHS head Kathleen Sebelius?)
  • Dr. Yvette Janvier, who is highly offended at the idea that people with autism could possibly have GI dysfunction despite the fact that now even the denialist CDC now tells docs to screen for GI disturbances in children with autism, and who, despite being neither a person with autism nor an autism parent, is holding a seat meant for members of the public
  • Dr. Storey Landis who resigned this weekend after passing notes during an IACC meeting disparaging another member who is an autism mom
  • And perhaps the strangest appointment of all to the committee, Insel's neighbor, a reportedly pleasant autism parent that does not represent any group, does not do any public advocacy, does not seem comfortable with discussing autism science and doesn't seem to have any qualifications for being on the IACC. What are the odds that one of the most well qualified autism parents to sit on the most powerful government panel on autism just happens to live in the neighborhood of the chair of the IACC?

Add to that the fact that after the IACC voted to add vaccine/autism research to the government's strategic plan for autism, Insel pulled classic, corrupt smoke filled back room shenanigans, schemed to get people to change their votes, and then surprised public members of the committee with a revote, not on the agenda, but known to Alison Singer who had parted with Autism Speaks the night before because they didn't approve of her upcoming vote change, to ditch the vaccine research.

Insel also canceled research on chelation as a treatment for autism with the justification that DMSA chelation was to dangerous to even study, despite the fact that it has been the standard treatment for metal toxicity since the Navy developed it in the late 1950's, and is the treatment of choice for lead poisoning in children.

And why was Insel, the head of the National Institute of MENTAL Health present to testify with CDC chief Thomas Frieden at the H1N1 hearing held by the House Oversight and Government Reform Committee? Flu is not a mental health issue, is it? [Update - My bad... it was Anthony Fauci at the hearing... not Thomas Insel.]

Could it be that vaccines are the Insel family business and Insel's participating in this whole IACC political theater is merely to protect the vaccine program? It is surely is not because he has a heart for those with autism, as he won't dane to be in their presence and it cannot be because he is fascinated with autism itself, as he can't be bothered to sit through the meetings themselves.

Insel cares so little for people with autism that he actually ended a meeting early, preventing the testimony to the IACC of a child with autism who had flown in from California to address the committee. The child actually had to give his speech to an empty room.

Thomas Insel is an embarrassment to NIMH and the IACC is an complete farce under his leadership. I join with Dan Olmsted and call for his resignation from his leadership positions of both organizations, and for him to take his bogus committee appointees with him.

Please contact President Obama and demand the dismissal of Thomas Insel from NIMH and IACC, and put an end to the fraud, corruption and CYA in autism causation. Demand that someone who loves and values those with disabilities, who will legitimately pursue autism treatment and causation, WHO HAS A TRACK RECORD OF BOTH, be put in his place, not another elitist bureaucrat.

End the charade of the IACC, its obstruction of advancement in autism research and its complicity in the growing autism epidemic.


K Fuller said...

Thomas Insel is an embarrassment to NIMH and the IACC is an complete farce under his leadership. I join with Dan Olmsted and call for his resignation from his leadership positions of both organizations, and for him to take his bogus committee appointees with him. Level the field. Appoint members with a true desire to find the cause of Autism. Appoint members who are in the battle to save their children. Appoint members who treat those affected. NO MORE CONNECTION TO BIG PHARMA. NO MORE CONNECTION TO ANY VACCINE PROGRAM. NONE.

K Fuller said...


Ginger Taylor said...

Subject:Please resign your posts
From:Ginger Taylor
Date:Mon, 19 Oct 2009 13:12:57 -0400
To:Thomas Insel ti4g@nih.gov

Dr. Insel,

You should be neither the head of NIMH nor chair of the IACC. Please resign immediately so that your posts can be filled by someone who will serve people with autism.

Link: Autism Chair Thomas Insel Refuses to Ride in an Elevator With an Autistic Child

Stop prolonging the suffering of our children.

Ginger Taylor, M.S.

Autism Mom Rising said...

Thanks Ginger. This is exactly why yours in my first go to blog every day!

nhokkanen said...

Another tour de force, Ginger. Imagine any advocacy group leader avoiding association with his constituents... it boggles the mind.

Would an NAACP head step out of an elevator to avoid contact with people of color? Outrageous.

His let-them-eat-cake attitude toward autism families doesn't just speak volumes, it speaks libraries. He's got to go, yesterday.

Anne said...

Holly wrote a report on her experience attending the hearing that is contemporaneous with the event - an April 17, 2007, post to the Yahoo group EOHarm entitled "back from the hearing." She complains about being unsettled by "all the hugging and kissing and handshaking going on" and says that there were "a lot of lies put forth by Gerberding and Insel. What weasles they were." She talks about her son being "the only person with autism there today." She comments on Bob Wright's testimony, says Harkin did a good job, and characterizes people as "idiots" for discussing teleconferencing. She says that there has been seven years of lack of progress, which "sucks ass," and concludes that the hearing was "kinda worthless."

Although the events of the hearing were fresh in Holly's mind when she wrote the report, there was absolutely no mention of the elevator incident that's being reported now, 2-1/2 years later. It seems likely that, had the incident occurred as you are now describing it, Holly would have mentioned it at the time.

Ginger Taylor said...


This was Holly's response to your post:

"It was really the least bad thing that happened to our community at the hearing that day. I've learned to expect bad behavior in DC so a snub is not as important as the stuff that happened in the room."

Nostrum said...

Personally, I wonder if it wasn't the parent she refused to ride with, not the child.

shell said...

1in 29 boys now have Autism in NJ and that is still FAR from the truth. That study just released is FOUR years old and only looked at 8 year old children in public school. Asperger's -the real kind, not ASD kids labelled with Asperger's can not be barely counted in this study. Why? Because most Asperger's kids are not eligible for school services. Only if the impediment interferes with learning. If it does interfere it is probably not Asperger's in the first place. Now if they look at kids younger than 8 the numbers are way higher. What about the fetuses shot with Mercury via pregnant mothers since 2009? They did not dare touch upon that. Shell of "Recovering Autism ADHD and Special Needs," on youtube.

Unknown said...

I found this thread while trying to find out why NIMH is so useless.
You might enjoy my blog post about Insel (told from an unusual perspective.)


Feedback welcome. I'm from a different interest group but I think we all have the same beef with the gatekeepers of funding.