Photo Courtesy of U.S. Army
Dr. Thomas Insel is the Director of the National Institute of Mental Health as well as the chair of the Interagency Autism Coordinating Committee (IACC). These two roles put him in a key position to dictate the direction of autism research for the foreseeable future and to determine how federal funds are spent in this country. Given what the success he has achieved, I have to assume that he is an intelligent person and is knowledgeable about mental health issues.
But I have to wonder at some his actions relating to autism. Consider the following.
First is the matter of the public members of the IACC. The IACC holds tremendous power to set the agenda for autism research for the foreseeable future. It is composed of 12 representative from federal agencies and six members for the public at large. Because of what is at stake, every autism organization, large and small, wanted a seat on this committee. Or to put it in a nutshell, these seats are very important as such should be given to those who are extremely knowledgeable about autism and would be able to make a strong contribution.
Yet, if you look at the public members, one of them stands out - Christine McKee. Now, I do not have any first hand knowledge of this person or their qualifications but she does not appear to be associated with any major autism organization. The only things I know about her comes from the IACC press release announcing the committee members -
Christine McKee, J.D., has developed and manages an in-home therapy for her autistic child, creating and/or assembling all of the therapy related materials. Ms. McKee participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.This sounds like a description of every parent whose child has autism. While I know first hand that this is not an easy job to do, how does this qualify her for a seat of the IACC? Is she supposed to represent the view of the "typical" parent-advocate, if there even is such a thing? How was Ms. McKee selected for this seat?
I believe the answer is that Ms McKee is Dr. Insel's neighbor. I would like to think that Ms. McKee has more qualifications than just being a parent and choice of house but I can't imagine that she would be on the committee if she didn't live next door to Dr. Insel.
Why would Dr. Insel put his neighbor on the IACC?
Moving on, we come to the matter of the early adjournment of an IACC meeting that happened a few months ago. At the end of this particular meeting, there was time allocated for public comments. In order to make a comment you had to submit your questions, in advance, so they could be pre-approved. One mother did just this - she submitted, in advance, questions that her son, who has autism, would be asking at the meeting. The questions were approved and she was told that the comment time was at 3:30 on the day of the meeting.
The mother went through all of the preparations that were required to help her son get ready to ask the committee his questions. Given the nature of autism and the nature of the event, I can imagine that the family had to do significant prep work.
On the day of the meeting, the mother decides to skip most of the meeting and to arrive at the scheduled time for comments. I think we can all agree that sitting through a long meeting with a child with autism would not be anyone's idea of a good time (especially for the child). So they arrive at the meeting at the proper time only to find that the meeting had been prematurely ended over an hour before. The poor kid was left giving his comments to an empty room.
Needless to say, the mother was not pleased by this turn of events. If it were me, I would be equally upset.
To be fair, Dr. Insel did call and apologize to the mother afterwards. But at the same time, I am not sure that makes much of a difference. The people commenting were pre-approved, so the committee knew that they were coming. Given what the committee is responsible for and the fact that it was a child speaking, I have to think that they would at least guess that the child had a form of autism. You would think that the members of the committee would understand the challenges that a child with autism would have with this experience and do everything they could to make the experience a successful one for the child. In this case all that would have meant was sticking to the published schedule and not leaving early.
Why did Dr. Insel let the meeting be adjourned early? Did he simply not think it through or did he not care enough?
Which leads me to what is potentially the most disturbing item. Let me just first say that I do not like reporting what is basically gossip and normally I don't give much credence to unsubstantiated stories. However, in this case, the person reporting this story tends to be reputable and, even if the story below is only partially true, it would be a still be disturbing.
With that said, an allegation has been made that Did Dr. Insel refused to ride in an elevator with a child who had autism. From the Adventures in Autism blog -
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."I initially had a hard time believing that anyone would do this, especially a trained medical professional.
But then I remembered all of the looks and comments that my family has received while out in public. And the sorts of comments on stories like these that show the complete lack of understanding that the public at large has of autism. And then I look at incidences like the above two items and the other controversies that Dr. Insel has been involved in as part of his tenure at the IACC.
And suddenly parts of the above story become more believable. I still can't bring myself to believe that Dr. Insel would say "I'm not ridding up with them" but I could see him getting out of the elevator and even doing that small thing would say volumes about his character.
So I have to wonder, how much does Dr. Insel care about children with autism and is he the right person to be leading the IACC?