Monday, October 5, 2009

Michael John Carley: Candidate for AS board of directors?

One of the many complaints that neurodiversity proponents have about their favorite organization, autism speaks, is their apparent belief that AS disenfranchises those with autism in that no members of the board of directors are actually on the spectrum themselves.

For some reason that remains a mystery to your humble blogger it is more important to these people to have someone serve as board of director of an organization to whose goals they have overt hostility than it is for autism speaks to employ someone with autism in their organization. I am not sure what the unemployment rate is among persons with autism, but it is a good guess that it is mighty high. I have previously written about the autism and the workplace promotion (which I won't link to) done by autism speaks in spite of the salient absence of a paid autistic employee in their group.

One of the arguments made for putting a spectrumite on the board of directors of AS is that other autism organizations have persons on the spectrum in position of power. For example one of the board members of ASA is Valerie Paradiz, a Ph.D. in German literature, a former college professor, published author of a memoir and now an autism consultant and lecturer. She makes the claim (which I am skeptical of) that she herself is on the spectrum. I am mystified how this person gives a voice to someone like Dov Shestack or John Belmonte or any other non-speaking person with autism who requires round-the-clock care. Or even for someone on the spectrum relatively high functioning such as myself.

It seems as though persons with autism who believe in an neurodiversity perspective may have cause to celebrate. It would seem that one of their own, Michael John Carley, who like Dr. Paradiz has a published memoir and is an autism lecturer (though not sure if he is a consultant) seems to have quite a friendly relationship with autism speaks. He has had AS president, Mark Roithmayr give his book a shout-out. He and former autism speaks executive, Allison Tepper Singer exchanged some articles of understanding in which they publicly exchanged views.

Given the controversy over the recent "I am autism" video. Carley has weighed in with his perspective. A neurodiversity blogger, Sarah, a cat in a dog's world, has
given her take on Carley's perspective. We see from reading this that though Carley has never met Bob or Suzanne Wright he has met their grandson. So, there seems to be a friendship between Carley and some persons in AS. (though Tepper-Singer is no longer with the organization). Carley has tried to talk up autism speaks. He has disingenuously claimed that they are talking less about a cure. Sarah correctly called him on this.

One place where Carley did hit the nail on the head was his assertion that certain individuals were jealous of the Wright's financial situation. Now this is probably the real reason ND wants an autistic person on the board-particularly an autistic who shares their perspective. They can't acquire the capital for their activities, so by getting on the board of autism speaks, they will be in a better position to acquire it for their own ends.

Carley talks about how the research autism speaks will have some sort of global benefit. This is in spite of the fact that he has spoken for all autistics preaching the familiar "acceptance not cure" mantra on radio interviews. In his book "Asperger's from the Inside out" Carley has claimed that there is a universal feeling among those on the spectrum that they should not be cured. Naturally he neglected to consult either Roger Kulp or myself or any other pro-cure autistic.

Carley who was able to get married, have children, work in a decent paying job and likely never spent a day of his life in a special education school, did not find out he had AS until age 36. Only after his son was diagnosed with an autism spectrum disorder. This is the reason I only read bits and portions of his book and not the entire book. I do not feel he has anything to offer to me about information about the spectrum on a personal level.

For these reasons, it concerns me that he actually has a shot of being the first person claiming to be on the spectrum who will gain one of the coveted board of directors positions at autism speaks.

One would think that neurodiversity would be celebrating and dancing in the street that one of their own has a realistic shot of getting that big score, one of their own, being on the board. Apparently not. Sarah has certainly called him to task. The much nastier ND, "the autistic bitch from hell" has not minced her own words and has referred to Carley as a "curebie suckup" and a "quisling", slurs that the ND community has called your humble blogger in the past.

Carley's ND detractors rightfully see him as someone who may have an ulterior motive in being involved with a pro-cure organization when Carley himself has said that a cure should not be found. Carley, an author, and autism lecturer, it would seem, makes a good portion of his living on the backs of persons with Asperger's and autism. He sees what a good idea it is to get involved with this organization. Amazing, Sarah, ABFH and I all agree on something! So, apparently Carley's appointment to the board won't shut up the ND lobbyists who so adamantly insist that one of their own be appointed to the board of directors.

Carley's behavior may be, however, what it takes to get one of their own on the board. Here you have it ND's, one of your own may soon be on the board of autism speaks. He will lobby for acceptance rather than cure in the board meetings. He will lobby for the politically correct language you so desire. But somehow it would seem you are not happy with this. You see Carley for what he is. But you wanted someone on the spectrum on the board. Now you may have it. Perhaps in the future you neurodiversity proponents should be careful what you wish for.


jon Shestack said...

Why not "acceptance AND a cure." Anything less is hateful to me and i think Dov would say the same. But, just to be sure I will ask him this evening.

As for being a member of the AS board, membership for Mr Carley will not advance the ND position or Mr Carley personally. Though he will certainly be asked to

I recognize that ND folks has real issues. Humiliations and unfairnesses abound. But they help no one by going on the board of mainstream autism organizations. These organizations are set up to help people who are fundamentally different. Who are for the most part dependent on others. Who can not get married, communicate, or perform useful work unaided.

What the mainstream autism organizations need is to make sure that actual parents and siblings, people with firsthand exposure to the disorder and who also have real credentials as activists are represented in the decision making process, particularly the scientific funding process. AS and Simons run the risk of becoming like NIH, institutional echo chambers where new ideas get drowned out by the old voices.

The ND activists have no desire to foster research and they should stay away from organizations where that is the main goal. But they do seem very concerned with rights and perception, and I feel that they have had a great influence in these areas very quickly. It would be great to see the ND community coalesce and concentrate on those issues and not muddy the waters and inflict emotional hurt on those families that are desperately searching for a cure and a better life for their children.

Jon Shestack

highschoolteacher said...

What about tokenism?--at least they aren't guilty of that. And also, don't you think Autism Speaks doesn't really address the high-functioning crowd so much anyway (who can, you know, speak), so they may not see the need to put a declared "spectrumite" (your funny word) on there.

jonathan said...

The ND activists have no desire to foster research and they should stay away from organizations where that is the main goal

Jon: I must respectfully disagree with this statement as the ND's have Laurent Mottron and Morton Gernsbacher in their camp. Respected researchers, who in spite of their ND perspective, regular publish in peer reviewed journals. Autism speaks has fostered the ND research agenda by awarding Dr. Mottron a half million dollar grans. Why they would fund this man is beyond my comprehension.

It would be great to see the ND community coalesce and concentrate on those issues and not muddy the waters and inflict emotional hurt on those families that are desperately searching for a cure and a better life for their children.

A nice pipe dream indeed, I can say with reasonable certainty that it won't happen.

jon Shestack said...

Two things; first I am grateful for your perfect and succinct description of the two big lies of the ND movement.

At the risk of sounding, dare I say it "catty," when I read some of these blogs, I detect a decided lack of empathy.

Not all autism is alike, and his autism isn't likes hers or his or yours. The world would be more simple if it weren't that way. Neurodiversity is actually the great denier of diversity.

As for the notion that the ND people will take over As through infiltration, surely you jest. I founded CAN and the Autism Genetic Resource Exchange, and helped get the children's health act passed and am on the executive committee of AS and I have had a minimal bordering on nonexistent effect on its policy.

Jon Shestack

Jake Crosby said...

And to think that Autism Speaks would not have even existed had Katie Wright's son not received his MMR about an organization that acts against the purpose of its own foundation.

jon Shestack said...


You are right As has funded Mottron, who sometimes is politically annoying. However, he does very important work that can have an impact on non verbal people with autism.

jonathan said...

You are right As has funded Mottron, who sometimes is politically annoying. However, he does very important work that can have an impact on non verbal people with autism.

What work is that, can you cite a study? I concede I am not familiar with everything he does, but it seems to me for the most part his research deals with very high functioning autistic persons, usually those with IQs of 85 or higher. It is unlikely that Dov or other nonverbal children would ever qualify for any of his studies. Apparently they may have had some for Michelle Dawson's Wechsler vs. RPM study. How these were obtained when all their other subjects were high functioning is a mystery to me.

I think you and the rest of the AS board have some serious explaining to do of parents of autistic children who walked for donations and were lead to believe that AS funds research with the intent of curing autism when this man who believes the fact your son can't speak or dress himself or take care of himself in any way is harmless.