Today, Autism Speaks is sponsoring a conference for families and professionals called "Treating the Whole Person with Autism: Comprehensive Care for Children and Adolescents with ASD."
It featured my favorite neurotypical autism expert:
Peter Gerhardt, Ed.D., director of the McCarton Upper School and chair of the Scientific Council for the Organization for Autism Research, emphasized the need to continually think of the changing care needs across the lifespan. Dr. Gerhardt stressed the importance of making optimizing adult outcomes a much higher research priority. In particular, he noted the need to identify and focus on meaningful knowledge and skills vital for independence and fulfillment.
And then there was a lot of stuff about gut bugs and genetics.
Chief science officer Geraldine Dawson said:
"The theme of this conference, treating the whole person, reflects our ultimate goal of helping individuals with ASD to have healthy and successful lives."
But is that the ultimate goal of Autism Speaks? Or, as they are telling Walmart shoppers across America, is Autism Speaks "dedicated to finding a cure for Autism"?
It's nice that the Twin Mills Camping Resort is raising money for Autism Speaks. It would be even nicer if the version of Awareness that Autism Speaks espouses in 2012 included telling them that many autistic people feel hurt when NT people give events to raise money for us names like "Camp for a Cure."
Oh-- and Autism Speaks is advertising on thAutcast today! So they can pay for you to read why I think eugenics are a major part of their agenda.
Thanks, Autism Speaks!
Autism Speaks made me buy pens at Walmart.
When my friend Paula C. Durbin-Westby posted about "school supplies" with Autism Speaks branding being sold at Walmart, I had a reaction that could be described as both stereotypically gay and snobbish.
That's tacky and sort of pathetic. How come Autism Speaks always gets down scale partners like Walmart and White Castle? It's like they want to be Komen for the Cure's lowbrow baby brother. Well, at least it's better than the meat-and-grease scented candle.
I posted Paula's picture on the thAutcast Facebook page because I thought the items were an interesting curiosity. Without comment because I thought she had an interesting point of view on it, although one which I did not especially share:
Acceptance? Really? You have to be kidding. Autism $peaks is now in the "acceptance" business. Autism $peaks' marketing slogan for this is "Acceptance and Awareness just got a little easier in our schools.. Autism Speaks school supplies available at WALMART!"These are available in the *school supplies* section of Walmart. This photo is from my local Walmart. These are being sold in the school supplies section because, you know... children and autism are totally related. Lots of children will probably want cool school supplies with blue puzzle pieces on them. Puzzles are fun, right? Kids like puzzles. For those kids who don't like Autism Speaks, or don't want "autism awareness" shoved in their faces at school, this is going to be a problem.
And all hell broke loose. Lots of anger. One person asked if Paula was human. People are still leaving comments and we're approaching 300 of them.
I guess I should not have been surprised, but I was. I posted a link to this video of GRASP's Michael John Carley explaining "The Comic/Tragic Politics of the Autism/Aspergers World" because I think it provides the best explanation of why there is a longstanding conflict between Autism Speaks and autistic self-advocates.
I signed Paula's petition.
And then I was ready to move on.
My friend Jennifer is very excited by some of the things that she saw and heard at the recent Autism Speaks conference in Chicago. I'm hoping that she will write about it here, because I think there is genuine positive movement within AS that I want to recognize and encourage. That's what I was thinking regarding Autism Speaks yesterday.
And then Paula posted something else about these "school supplies" (which really look more like "office supplies" to me, but Autism Speaks is calling them "school supplies"). They all prominently display this message:
Every purchase supports Autism Speaks, the largest research & advocacy organization.
6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism.
Them's fighting words.
Autistic people have been asking Autism Speaks to stop using the cure language since long before there was an Autism Speaks.
Thom Hartmann hosted an interview with Mike Elk and Ari Ne'eman yesterday. Hartmann takes Scarborough to task for his recent comments suggesting that accused shooter James Holmes is autistic, but the discussion went much further and could serve as an excellent introduction to basic concepts in neurodiversity.
Elk is a journalist for In These Times who believes that it is important for successful people like himself to be open about their autism. He says that autistic people are already isolated, and that comments linking us to violence will make us more isolated. Research does not show any connection between autism and the sort of violence Holmes is accused of.
Ne'eman is the president of the Autistic Self Advocacy Network and the first ever autistic presidential appointee. He points out that this is not an issue of political correctness, but one of prejudice.
Both discuss Autism Speaks. Elk shares my opinion that it has a lot in common with Komen for the Cure. Ne'eman talks about research priorities and the need for a discussion about autism that acknowledges both strengths and challenges.
Essential. I would have liked to have heard from a woman as well, but that's my only criticism.
Simone Greggs is suing Autism Speaks for disability discrimination, saying the orgainzation would not make accommodations for her needs as the mother of an autistic son:
In a complaint filed in the U.S. District Court for the District of Columbia earlier this month, Greggs said that she was supposed to start her new job as a walk events manager at Autism Speaks’ Washington, D.C. office in early May after successfully completing five different interviews, a pre-employment background check and a drug test.
But Greggs said everything changed after she asked her new employer if they would accommodate an alternate work schedule or allow her to work from home on Wednesdays when her son’s school let out early.
Greggs was told that such accommodation would not be possible. She then made other arrangements for her son, but was subsequently informed by Autism Speaks managers that they were “rescinding the employment offer because they did not want to make any accommodations for the care of her autistic child,” the court filing says.
Both this report on autistic adults and the video version of it are interesting to watch because of the different attitudes shown by the neurotypical experts who are interviewed. Of course, although we do see an autistic adult, nothing he nor any other actual autistic person has to say was included.
We do hear from Dr. Peter Gerhardt, one of the most compassionate NT experts:
"Right now we talk about what a horrible, challenging, significant developmental disability it is, but then I come along and I say yeah, but you can hire him," Gerhardt said, "If we give a little on one end in terms of accommodating our need for specialized services on the other end diminishes a little bit. So we can find a very positive accommodation I think by working on both ends of this spectrum so to speak."
But we also get a lot of Autism Speaks horror talk, both from the anchors and from the Cleveland Chapter founder:
"There's, what I call, a tsunami of children coming in down the pike," said Shari Goldberg. Her 15-year-old son Noah was diagnosed with autism at 18-months, "If one in eighty-eight children right now have autism then imagine how many adults and we have to help those adults and figure out how they're going to fit into our community because they are our community. They're our children, our brothers, our sisters."