Wednesday, October 14, 2009

AS board member gives take about autistics on the board

One of the controversies that the neurodiversity movement has brought to the forefront in the past is the question of why autism speaks' board of directors does not include someone on the spectrum themselves. They feel that the name of the organization is ironic in that it disenfranchises those with autism for that reason.

When various persons, mostly neurodiversity believing persons on the spectrum, complained about this, I suggested that they contact autism speaks and ask them why there were no board members with autism. At the time, as far as I knew, AS had never been contacted and asked this question. Janet Norman Bain (AKA Jypsy) wrote a comment on autism's gadfly stating that she had in fact sent AS email asking them the question, and had only received a curt form email thanking her for sending them the email and had never directly received a reply. Michelle Dawson also stated that she had asked officials at autism speaks the question and they had just stated they were happy without any board members on the spectrum. Michelle then seemed to imply that I was giving inaccurate information, though I had no way of knowing either Jypsy or Michelle had asked this question.

Mike Stanton took my advice and sent an email asking autism speaks this question. Apparently they never answered him either. Both Jypsy and Mike seemed to think the onus was on me to dig up the answer because I had blogged about it. I respectfully disagreed, but told them that I occasionally ran into Jon Shestack and Portia Iversen at certain autism-related things and although I did not know them very well, if I ever saw them again I would ask, but not go out of my way to find out. I told them if I ever got a response that I would post it here on autism's gadfly.

I recently wrote a post about one spectrumite who seemed he might be a candidate for the board of directors of AS in the foreseeable future. As luck would have it, Jon Shestack read this blog entry and weighed in about the question of persons with autism (at least those with an ND perspective) serving on the board. In case Mike and Jypsy have not read the comment by Mr. Shestack, I feel that I should print it here in order to keep my promise to them. Given that Mr. Shestack is a member of the board himself, what he said may be of interest:

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.

I disagreed with Jon's statement about the ND's not being interested in scientific research and pointed out the nearly half million dollar grant that AS had recently given Laurent Mottron and the persons who work with him. Though I agreed it would be a laudable goal for ND just to concentrate on human rights and dignity for persons with autism and not inflict abuse on families wishing for a cure and a better life for autistic children I pointed out to him that this is quite unrealistic.

Other than these two points of contention, this seemed like quite a good response to me. It also seemed quite a magnanimous response on his part, considering in the days before Allison Tepper Singer this man (and possibly his wife) has received more vilification than any other autism figure. He has been called a Nazi, Hitler incarnate and autism diva once called him "a spoiled Hollywood type".

One of the reasons that ND may have expressed an interest in a position on the AS board is they believe this will give them some power. Roger Kulp seemed to think that ND was trying to take over autism speaks by infiltration. As far as Roger's notion being accurate and whether or not Mike Carley would be able to sway AS to an ND agenda, Mr. Shestack again gave his input.

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.

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 fundraise.

Though I realize that this does not give an out and out answer to the question of why there are no autistics on the board of directors of autism speaks, it does partially answer it I believe. If others in power at AS feel the same way as Mr. Shestack does then perhaps, they feel that having an autistic (at least one with an ND perspective) does not help their organization as they have different goals and he feels these people aren't helping themselves either.

It would also seem that being on the board of directors does not wield the power that persons who have asked about that seem to think it does. Jonathan Shestack is certainly in a position to know as well or better than anyone else. Instead an ND board member on the spectrum would be asked to engage in what would probably be to them the drudgery of having to get money into the organization and not reaping what they perceive as the benefits. So ND again might be careful what they wish for.

This is the best response to this question I have been able to get so far. If any other breakthroughs are made I will post about them on autism's gadfly. I hope Jon Shestack won't mind my bringing attention to him in this post and printing out his comments from another post.


jonathan said...

Roger: I know Stephen Shore well and he is opposed to a cure for autism, so he would not be my choice. He also has said he is not interested in being on the AS board unless they change some of their policies, but not sure of the specifics.

John Best said...

Will someone nominate me? The ND's keep telling me I'm on the spectrum and I think I could really represent their interests properly.

Jake Crosby said...

You know Jonathan, you often tell me that I'm coming up in the world implying you don't get much attention by comparison, but you've had both John Elder Robison and Jon Shestack comment on your blog. That is what I would call considerable attention, especially considering the number of hits your blog gets. Your opinion is being given greater value, but you don't seem to acknowledge that very often. I think you are making more of an impact than you've lead yourself to believe.

jonathan said...

well thanks for the kind words, Jake.

Anonymous said...

Steve's a good, soft-spoken guy despite his opinion on whether he's cure or anti-cure.

Even if he's told us and mentioned in his books that he's anti-cure, you never know how a man who doesn't live in your state really feels about this. Only his close relatives and wife know the truth.

Stephen, if you're reading this, I hope you don't take offense to what I'm saying. If you're really anti-cure, that's fine with me. If you're truly for a cure (or a curebie as ND likes to label inspite of hating labels), that's cool and I'll understand why you wouldn't want to tell the truth if that's how you really feel.

John Best said...

I hope you realize that Autism Speaks is also your enemy. They are never going to try to cure anyone of autism.

AS needs to be destroyed along with Neurodiversity and the assholes at Age of Autism. All three of those sects are corrupt.

They all say some of the right things but they each play games with the truth about autism in different devious ways. Age of Autism pretends to favor curing autism but they don't tell you the right way to do that. Autism Speaks tells you they are searching for the non-existent genetic cause. And, the neuronitwits insist that autism is just a different philosophy on how to view the world.

All three are writing BS and they all need to be eradicated.

Larry Arnold PhD FRSA said...

You know sommat me old pal me old Beauty maybe my next step will be to take a seat on the board of Autism Speaks UK :)

There is a certain irony within the disability movement and elsewhere. I have spoken about pissing inside and outside of the tent, (The quotation comes from LBJ no less not LBA)

The disability movement chastises the charities for not including bona fide 'stakeholders' on there boards but when someone does step over the line and take on that role, it is a general accusation of quisling.

I have to say it takes a rare ability to maintain ones equilibrium on a board where to begin with all are against you, and all outside are accusing you of having sold out, it is not an easy position to take at all, all round.

I guess Stephen Shore knows what I mean, and yes I do regard Stephen as a pal, his presentation at the last NAS conference was better than I expected and mine was worse, so it goes...

It might surprise you to know that I do actually talk with Autism Speaks in the UK, but not the same way Michael Carley does. They know what I am doing, and so far they have not sent there lawyers after me. I think they have read there Machiavelli too.