Interagency Autism Coordinating Committee Meeting: Debriefing

Yesterday, I attended a Washington, DC meeting of the IACC, a US governmental administrative committee that decides where to invest federal autism research money. The meeting took up the entire day. The most interesting part of the event was probably the last hour when people were permitted to make comments.

Various members of the autistic community were present at the meeting to express their discontent with the current state of Autism research. The most memorable comments were delivered by Katie Miller, an autistic advocate who articulately and succinctly denounced committee member Allison Singer of Autism Speaks (who happened to be sitting three chairs down from Katie) for making derogatory comments about the value of autistic life. Read on to find out what exactly transpired.

Autistic Katie Miller delivered her comments in a clear matter-of-fact demeanor and appeared to be the most articulate individual to speak throughout the entire meeting. Consequently, when she got to the part of her statement about Allison Singer, Katie made quite the impact. For those of you who don’t know, Ms. Singer, the vice president of Autism Speaks, said in a fundraising video that the only reason she didn’t kill her autistic daughter and herself was due to the fact that she has a normal daughter.

The director of the National Institute of Mental Health made a comment after Katie’s statement urging people to try to keep the personal attacks to a minimum but many of the other people, especially the autistic advocates, were supportive of Katie. In fact, the head of one state’s Autism society told me after the meeting that she thought the director’s response somewhat hypocritical. Others told me “it needed to be said.”

Ari Ne’eman of the Autistic Self Advocy Network, a nonprofit autistic rights organization, delivered comments after Katie. Ari repeated Katie’s sentiments about Ms. Singer, explaining that the her comments are extremely troubling because they contribute to an environment of hostility towards individuals with Autism.

I was the last member of the public to speak to the committee. People responded particularly well to my last paragraph in which I explained that scientific research should be conducted out of hope, not fear. According to those I spoke with after the meeting, the audience verbally expressed agreement with my points concerning research while I was delivering my comments.

The meeting went exceptionally well overall, although there were some troubling statements made by members of the committee. For instance, committee chair and NIMH director Dr. Insel at one point likened Autism to Polio. He also expressed his desire to “wipe Autism off the map.” Another member of the committee used the term iron lung in a derogatory fashion.

The presence of Stephen Shore on the committee was comforting although the presence of an autistic is mandated by a law that was enacted due to pressure from autistic rights organizations such as ASAN. Stephen Shore did call one member of the committee out for not including autistics in her list of people who need to have input and he also contributed positively to rewording the mission statement of the IACC.

Stay tuned for the complete texts of Ari Nee’eman and Katie Miller’s public statements to the committee.