Wednesday, February 10, 2010

Rant : Michael John Carley finds autism hard to swallow

Michael John Carley, the executive director of GRASP, seems to be upset over the possibility that Asperger's will be merged in with the general autism category in the upcoming DSM V.  I had never heard of either Mr Carley or GRASP until today, and I am starting to wish that I had not.  GRASP is apparently yet another autism support organization -
GRASP is an educational and advocacy organization serving individuals on the autism spectrum
What makes GRASP unique, other than its proven seven year-old support group network, its educational outreach, and its use as an informational clearinghouse on issues relating to the autism spectrum, are the stipulations GRASP must adhere to in accordance with our bylaws — that the Executive Director, 100% of the Advisory Board, and 50% of the Board of Directors of GRASP must be diagnosed with either Autism, Asperger Syndrome, or Pervasive Developmental Disorder.
You would think that an individual who was the executive directory of an organization like this would be understanding of exactly what autism is and the challenges that individuals who suffer from the condition face.

Well, you would be wrong.  Quoting from a story carried by The Autism News today -
But the change is going to be hard for some people with Asperger’s, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger’s From the Inside Out. “I personally am probably going to have a very hard time calling myself autistic,” says Carley, who was diagnosed with Asperger’s years ago.
Many people with Asperger’s take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is “somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow,” he says.
There are so very many things wrong with these statements...

I won't even get started on absurd idea that Albert Einstein or Thomas Edison had Asperger's.

First of all Mr Carley, you are already "autistic" - that's what is means to have Asperger's.  But more importantly, I am truly sorry that you have to swallow your "Asperger's pride" and accept the fact that you will be officially on the spectrum with "those other people".  You know, the ones that have to wear adults diapers and might have to be restrained because they hurt themselves.

Because you know, some of our children ARE greatly impacted by their autism and are going to have issues to deal with their entire lives. They don't have delusions about being Albert Einstein but quite possibly might like to be able to live independently at some point in their lives.  Or at least we think they would like that - they can't exactly talk well enough to be able to say that quite yet.

I am truly sorrow that you consider it some sort of burden to be lumped in with children (or adults) like this.

But let me ask you this, Mr Carley.  Since you apparently find it "hard to swallow" that you may be grouped with "those people", what the hell are you doing running a support group for people with autism?

OK, now that I have that out of my system I feel much better.


  1. MJ: I had heard of Carley long before this. He is just another neurodiversity idealogue who makes the blanket statement that it is universal among autistics not to want a cure without consulting me (as you read my blog you know how i long for a cure for myself). He has published a book and apparently wants to make a living as an autism consultant. He was never diagnosed until age 36 when his son was diagnosed. He worked as a playwright and diplomate and I doubt ever went to special ed as I did. He is someone not to be taken seriously in the same vein as most of the other NDs. If the DSM is changed so that he can no longer call himself autistic and claim he knows what it is like to be one of us then that is fine with me.

  2. You are most likely right, Jonathan.

    I just have never seen someone, even from the ND camp, say something that comes across so much like bigotry towards lower functioning people with autism.

    Since this gentleman was in fact a diplomat, you would think that he would have learned to be a little more tactful about his beliefs.

    People never cease to surprise me.

  3. You've got Michael Carley pegged. He is a lot more disabled than he believes and he is trying to make his living by being a self appointed spokesperson for autism. He and Ari Ne'eman should both shut up and find gainful employment.