By Katie Wright
A month ago Dr. Tom Insel, director of the NIH’s Interagency Autism Co-coordinating Committee appeared in public at an Autism Speaks event. What a surprise! We, the community of ASD families, have not seen Insel at an autism event since 2014.
The last IACC meeting was almost one year ago. Since that time Dr. Insel has yet to announce the date for the next IACC meeting or even the member roster for the new 2015 committee. 2015 is more than half over so you can see how high priority autism is for Dr. Insel.
Rob Ring had asked Insel to discuss NIH ASD research “progress,” on a public panel. I know, I know, you are laughing. And yes, when asked specifically what progress the NIH has made regarding autism Insel’s answer was, you guessed it, early intervention! Sure that is the same answer Dr. Insel gave in 2000, 2001, 2002, 2003….you get the point. Insel really sticks to that script.
It is disappointing that AS’ Dr. Rob Ring did not use the opportunity to ask Insel why he has failed to hold ANY IACC meetings in 2015. Ring holds a seat on IACC and his job is to represent the community of ASD families. Ring should have been asking Insel tough questions, not softballs. Ring’s job is to represent our children (who, by and large have no voice), not to be Insel’s pal.
We did our part. Year after year ASD family members nominate the same excellent candidates in hopes that an IACC seat is given to someone who actually represents a large autism advocacy and service program. Year after year we have been disappointed as Dr. Insel instead appoints members of an autism comedy troupe, assistant professors from colleges no one have heard of, former do nothing CDC bureaucrats who barely show up…
But I digress. In my efforts to advocate for better stakeholder representation at IACC I have learned an important lesson. Unelected bureaucrats are simply not accountable to the public. Public, smublic!
You know what? Being the unelected director of NIMH is kind of like being a president of life. No elections, no deadlines, work when you want to work because you cannot be fired…. Boy, I wish we all had it so good!
Maybe, when Dr. Insel feels like it, or when he has spare time Insel will re-adjourn IACC? Until then tell your ASD child that the NIH is doing great work on early intervention! I am sure he or she will be thrilled.
Katie Wright is a Contributing Editor to Age of Autism.