The newly reconstituted IACC (Interagency autism coordinating committee), the panel of members from the federal government and general public with a stake in autism, who advise the government on how to direct research and advise the government on autism policy, had a full committee meeting a couple of days ago.
Back in April, I wrote a post discussing three of the newly appointed members of this august committee and my dissatisfaction with these individuals being selected for posts advising the government on how to deal with autism spectrum disorders.
There was another individual whom I was not familiar with at the time, Noah Britton, who, in retrospect, I wish I had commented on in the above-linked post.
If you go to approximately the 27 minute mark of the above-linked video, you'll see this guy giving his introduction to the committee as a newly appointed member. He states that he became a member of the IACC to represent "The thousands of people" with Aspergers who wish not to be cured and have the right to say no. While everyone else in the room is extremely well dressed, Mr. Britton attended the meeting wearing a raunchy white t-shirt with the crude lettering My Body, My choice emblazoned on the front.
A perusal using Google shows us that Mr. Britton has compared autism speaks to the Ku Klux Klan running the NAACP and not letting any black people in. Mr. Britton apparently is not familiar with the half million dollar research grant awarded to the Mottron group of whom Michelle Dawson is part of. He is also apparently unaware of their funding of autism talk TV run by anti-curebie Alex Plank. To the best of my knowledge, Autism Speaks has never funded any endeavors that a pro-cure autistic has been involved in.
I am curious as to where Mr. Britton comes up with his "thousands of people" figure, particularly given he uses it just for Asperger's and not for autism. As far as I can tell, he's just conjured this figure out of thin air. He also wants to represent one small segment of the autism community--those with Asperger's, and not represent other ASD's that are not Asperger's. It would seem a decent committee member would want to represent the interest of all persons with autism and not just his own.
I'm also not sure where Noah gets the idea that assuming a cure for autism is ever found in his lifetime that anyone is proposing to force him (or any other adult past the age of consent) to undergo it. Perhaps he'd like the government to legislate that persons with Asperger's under the age of 18 can have a choice independent of their parents assuming such cure is found, I don't know. I am also curious as to what his stance is on curing those on the spectrum who are not Asperger's.
Well, Mr. Britton, if you ever happen to read this post here's an inflammatory analogy to match your KKK-NAACP one: I believe appointing you to a government post dealing with autism is like appointing a member of the mafia to serve on their city's police commission. If any reader thinks lowly of me for stooping to Britton's level, so be it. Tit for tat.
Though I don't expect a cure to be found in my lifetime (particularly at my relatively advanced age), I do long for one and I wish those who are interested in autism would pursue one and someday, the autism society, autism speaks and the IACC can say, we can disband, we don't need to have these organizations anymore.
To date, five persons on the spectrum have been public members of the IACC. Every single one of them has been opposed to curing autism. Only one pro-cure autistic, as far as I know, has been nominated as a public member, he was not appointed. Not a single one of us has ever been appointed. So the score remains five to zero, though the IACC states they want balanced points of views. They seem heavily skewed towards neurodiversity, though the law states the committee was created for the purpose of combating autism. I'm wondering what is the sense of that?
Though I won't bandy about statistics in the same manner as Britton, I will say there are a good number of persons on the spectrum I know of who wish they could be cured. Myself, Jake Crosby, Oliver Canby, Chris Charette, Sue Rubin, Marty Murphy, Tom Mckean, Roger Kulp, just to name a few. It's likely there are thousands of others who feel the same way, who have to struggle every day with this horrible disability. However, many of these individuals are incapable of speaking or writing blog posts or even telling the IACC how much they hate this disability and wish a cure.
If I had my way, the combating autism act would be jettisoned and consequently the IACC abolished, but it does bother me the federal government has such a cavalier attitude toward those of us who wish a cure.
Now we know who at least one of the public member IACC represents. I wonder if there will ever be anyone to represent us.