I see that John Elder Robison is crowing about the new public members, himself included, who have been appointed to the IACC (Interagency Autism Coordinating Committee for those not in the know). This agency has both federal and public members who advise the government on autism policy and decide how tax dollars are allocated. The CARES (formerly Combating Autism Act) act which requires an IACC has stipulated that at least one autistic (maybe more) be appointed as public members. So far, at least five (maybe more) anti-cure autistics have been appointed as public members and zero pro-cure autistics.
The post states that three autistics have been appointed to the newly formed IACC. Besides Robison, I don't know who the other two are. ASAN's Samantha Crane who might be so severely autistic that she could only graduate from Harvard Law school and not get a job other than working for ASAN may be one of those. She is described in the post as "an autistic self-advocate" so maybe she is one of the other two. If Ms. Crane is geniunely autistic, that means she's the sixth anti-cure person on the spectrum to have been appointed to the IACC since its inception.
Roger Kulp, an autistic man whose autism has prevented him from going to college and working and has to live in poverty on SSI has expressed a desire to serve. He apparently would like a cure for autism, since he's devoted a lot of his time researching cerebral folate deficiency and mitochondrial disease. He has approached DAN doctors and has been a subject in studies of experimental treatments at the University of Arkansas with Jill James, Dan Rossignol and other doctors interested in metabolic forms of autism. He's read a good deal of the literature on the subject of this specific type of autism and has a true interest in finding a way to help solve these problems which have made his life so difficult. He went to special ed schools for a number of years and has had seizure disorders and other problems. Roger can correct me if I've made any errors about his history.
I won't come out and endorse Roger since I don't even believe the IACC should exist, but if I were to endorse someone for that position it would be him hands down. He's also expressed an interest in being a board member of Autism Speaks. Neurodiversity complains so much about AS not having any board members on the spectrum, I'd think they'd be happy to endorse Roger.
Though I don't want the IACC to exist, and, in fact, I support complete repeal of the CARES act (which I know congress is never going to do), Roger's appointment as a public member would have been a real boost for our side. It would have shown the government actually gives a shit about those of us on the autism spectrum who really feel we suffer from this affliction and want to use science to find ways to solve it or even cure it.
I know Alex Plank, Michael John Carley and other individuals have claimed that all or most autistics don't want a cure. In fact, about fifteen years ago when I used to post on the autism usenet groups Tom Mckean and I were the only autistics that I knew of who publicly stated on the internet that we didn't like our autism and wanted a cure. Over the years, the tide has turned somewhat and I'm encountering more people on the internet who state they're on the spectrum and would like a cure, so contrary to what Plank, Carley, and others may think, we're out there.
Roger has expressed interest in being an activist and giving his input to help others on the spectrum. I wish him the best of luck in that endeavor as it's obvious the NIMH don't care about us and I'm wondering if Autism Speaks does either.
One bright side of this is that Matt Carey of the Left Brain Right Brain blog was not reappointed this year. Also I'm glad to see Noah Britton is gone.