Watch: Michael John Carley on "The Comic/Tragic Politics of the Autism/Asperger World"
Michael John Carley explains it you for you.
I hope that you will take the time to watch this presentation from Michael John Carley, the head of GRASP. It's an incredibly useful history of autism and its politics, from a guy who lived through some of the most contentious moments of both.
It can be hard for some parents to understand why adults with autism don't like Autism Speaks, or why people become incensed by the word "cure." Carley provides an excellent tour through not only the most significant events, but the reasons behind them.
I have mixed feelings about GRASP. Because I tend to look at autism history through the lens of the gay rights movement, it's hard to take seriously an organization that reminds me so much of the pre-Stonewall Mattachine Society, which warned its members to wear suits and dresses to its protest marches so they would be taken seriously. But, unlike Mattachine, GRASP accomplishes stuff-- they got Autism Speaks at least to respond to objections about their earliest, nastiest publicity, and they were instrumental in getting the dreadful "I Am Autism" video taken down. That's a huge accomplishment when you consider that the even-worse "Autism Every Day" is still the first video that will come up when you search for autism on YouTube (try it).
Anyway, you just have to recognize that Mr. Carley comes from the same culture of reasonableness and compromise at all cost that the President does. Although I think that's not the best point of view for a leader to take, it is superb for the role that Carley is playing here: historian and commentator.
He has a couple of over-arching themes:
1. Autism has had a history which is comic, because it reveals the most basic of human foibles, and tragic, because people have suffered unnecessary pain.
2. The autism community has gotten stuck at "anger" in Kubler-Ross's stages of grief.
I was especially impressed with how Carley addresses the entrance of Autism Speaks onto the scene, and the efficiency of his explanation of the vaccine controversy. His discussion of aversives is honest, fair, and disturbing. And I take pretty much the same view he does of prenatal testing that will allow parents to abort fetuses likely to develop autism: it's inevitable, so there's not a lot of good worrying about whether it's a good idea or not.
My greatest point of disagreement is when he says there is not much need for further research in autism and education. Studies of ABA done by non-enthusiuasts, which take into account the experimental advantage of behaviorist interventions are essential. And the state of research into effective classroom interventions for students with Aspergers or HFA is pretty poor.
I also wish Carley at least acknowledged that autism often does cause alarming behaviors, and those behaviors probably have more than anything to do with the negative associations people have with the word "autism" than anything that Bruno Bettelheim said or did. But he's right that Bettelheim's emphasis on the wrong and nasty idea that autism was caused by inadequately affectionate mothers hurt a lot of people, and warped the conversation about autism in ways that still make parents feel judged.
I also think the "anti-labeling" movement was less a reaction to Bettelheim than an acknowledgement that the labels put on children often seem arbitrary and the treatments that come as result of those labels are ineffective more often than not, and sometimes harmful. It's worth getting an autism diagnosis now because ABA and other early interventions are fairly effective. But that wasn't true in the 1970s when this movement was at its height.
Finally, I disagree pretty strongly when Carley says that it was the early intent of Autism Speaks to change opinions regarding people with autism so that we would be more accepted. I think it is clear from everything they said and did that they shared the negative public perception of people with autism and did not have any interest in increasing acceptance for us. What they were interested in was changing how the parents of people with autism are perceived-- how they should not be blamed for their children's behavior and how people should feel sorry for their suffering and sacrifice. Those are perfectly legitimate goals, but the extent to which they have pursued at the expense of people with autism makes it important not to misspeak as Carley does here. If Autism Speaks had wanted to build understanding for people with autism, their initial publicity would not have introduced the possibility that we do not have souls.
I am trying so hard to move past anger. But I am not there yet. This video helped push me along the way, though, and I hope it does the same for you.
UPDATED: To correct the spelling of Mr. Carley's name. Thanks, Jacob!