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.


Roger Kulp said...

Even if AS wants to grow a collective pair,and stand up to neurodiversity,there are a few on the spectrum,who would be an excellent choice.One man,who I just learned of,is Stephen Shore,who spoke at the Spring,2009 DAN! conference.It is a easier to see Mr.Shore as being the spectrum,than any of the loudmouth ND types who get so much media attention.See for yourself.

Now I have not read any of his books,

so I don't know where he stands on neurodiversity.I sort of doubt anybody who would be welcome to speak at a DAN! conference would be a rabid ND ideologue.In his talk,he does admit biomedical treatments work,and are necessary for some,but not everybody needs them.

He seems to be very different from the ND types,and talks about a type of self-advocacy completely different from what ASAN promotes.I think he would be a perfect choice. There must be all sorts of people like this,who would make very good choices,who do not seek attention by going on national TV.

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.

Roger Kulp said...

I don't always come back to blogs every day to read what has been posted,so I missed what Mr.Shestack said,but in the chance he should come back and read this,I would like to ask him why,if this is what he believes,then why does his organization continually cave in when ASAN,and the rest of ND complain about what they do?

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

Just as ND has no empathy towards the severely autistic,I have no empathy towards people who go around saying they represent autism,when they have not experienced the severe developmental delay,regression,or have no coexisting medical problems that contribute to the severity of their autism.In short unless they have been where I have been.

Unless you know what it's like to be eight or nine yeas old,and such poor control of your bowels that you are crapping your pants in the classroom.Unless you have had the head of developmental psychology at a large hospital tell you you are too severely autistic to take care of yourself,and need to be in a home all doped up on antipsychotics.Unless you know what it's like to spend fifteen or twenty years,climbing up from the bottom of a severe regression,only to have an acute infection,and then regress again as bad or worse than before.Not once,but three times. Unless you know what it's like to suffer what are basically severe absence seizures,and end up wandering for hours with no idea who or where you are.Unless you have done the stimming,and the headbanging for decades,and then be on a few high dose supplements for a few months,and had it all go away.In short,unless you have been where I have been or worse.

And this isn't even getting into the severe GI disease.Malabsorptive GI disease so severe it effected my sexual and muscle development as a child and teenager.Or the assorted sundry autoimmune or genetic heart and lung problems I have had since I was a child.

No there is no way I can have any empathy with some fat,balding "Aspie" who has never even regressed once.Or some cute precocious AS kid who is able to talk like a college professor,at an age when I could barely string a sentence together,and spent all day rocking,stimming,head banging,and destroying things.Half the time naked.

Neurodiversity has completely soured me on being nice to anybody with Asperger's.Autism Speaks needs to realize this is a cultural war. Neurodiversity is the enemy,and needs to be treated as such.They will never be your ally no matter how you placate them.

If Autism Speaks really wants to get serious,I suggest they start by putting someone with outspoken anti-neurodiversity,pro-cure beliefs on the board.I think Johnathan,Jake Crosby,or myself would be a very good example of the type of person you should look for.

Which then leads to the question just how many adults are there like us.I used to think there were a lot more than we knew about,but now I am not so sure.I am now convinced 99% of all adults on the spectrum believe in neurodiversity,and we are going to have to wait for today's children and teenagers to grow up before we see a real autistic backlash against neurodiversity.

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.