Insel, NIMH Director, Shows Disdain for Austistic Boy

by Heidi Stevenson

5 November 2009

Ginger Taylor wrote about the mistreatment of a woman and her autistic son. The importance isn't only that one person did this, but that the person most important for determining the treatment received by families hit with autism is so crass and uncaring. This, sadly, is how those trying to stop the autism epidemic are routinely treated by public servants in authority: stonewalled, with condescension, and outright lied to.

The author, Ginger Taylor, writes a blog, Adventures in Autism, providing "News And Commentary On The Autism Epidemic And My Beautiful Boy Who Is Living With Autism".

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 who 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" 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 even the denialist CDC now tells docs to screen for GI disturbances in children with autism. So, 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 who 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, known only 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 too 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 1950s, and is the treatment of choice for lead poisoning in children.

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 not because he has a heart for those with autism, as he won't deign 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 to 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 to 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.