Sunday, December 14, 2008

Neurodiversity members should contact autism speaks about no asd board members

As many people with more than a cursory interest in autism know, autism speaks has recently appointed two new members to their board of directors. If I remember correctly, one of these two board members is the parent of an autistic child. Neither of these two board members is autistic themselves. This has generated some controversy in the autism blogosphere as it asks the interesting question of why autism speaks has never had an autistic board member. It is felt by some that they largely ignore the people they serve by not having one of those people on their board of directors. Some of these people have answered the question themselves. For example David Andrews has stated that it is because AS's goal is to eradicate autistic people. Other people have given similar answers. In what is a great irony, the neurodiversity movement, the main detractors of autism speaks, have complained about the name of this organization and states that it does not speak for autism. Yet, these individuals with their omnescience, propose to get inside the heads of the AS leadership and speak for them without consulting to them personally about what the answer is to this question.

The controversy continues unabated. Two bloggers who are parents of autistic children, Lisa Jo Rudy and Kristina Chew have posted this question on their blogs. The latest to enter the fray is another parent of an autistic child and special education teacher and published author Mike Stanton, who asks, "Will Autism speaks ever speak for us?" Apparently he is asking is there some way we can get neurodiversity members involved in autism speaks, take over their hard earned capital and use it for our own purposes which totally disagrees with AS. These marriages of convenience do happen. After all, Anna Nicole Smith had a billion reasons for marrying that oil tycoon who was 61 years her senior. My friend from Norway, Ivar, (not Ivar Lovaas but an ND with the same first name) says that he posted something to autism's gadfly about how he felt money should not influence policy towards autism. Apparently his post got lost somehow as I never saw it. Well Ivar, if you read this, it is the sad truth. In the United States, we do not have the socialist policies that Scandinavian countries such as Norway and Sweeden embrace We have a capitalistic society here and those who manage to get on top, have power and can run the show. That may or may not be fair but that is just the way it is.

Though in the days when I was employed and had more money I donated money to CAN and NAAR on occasions before AS was created, I have never donated money to AS and probably would not for a variety of reasons even if I could afford to. I have never worked for autism speaks and have no involvement with them. I have no idea why none of their board members has autism but I realize it is an interesting question. I am just curious about the motives of those who usually ask this question.

In light of these facts I must ask the members of the neurodiversity crowd a question in response to their question about why there are no board members with autism at AS. Why haven't any of you called autism speaks or emailed them and asked them why they have no members with autism on their board. Perhaps they will give you an answer. Why can't their side of the story be told?

During the time when Zach Lassiter was claiming that AS was trying to prevent him from selling a t-shirt with a critical message about them emblazoned on it, I questioned the validity of the claim. It seemed far fetched to me that a multimillion dollar charitable organization would take time to harass a small time t-shirt entrepeneur. I called autism speaks and they referred me to a woman named Dana Marnand sp?? who is their communications director. I was told that Zazzle who marketed Zach's t shirts felt that Zach was violating their terms of service and Zazzle unilaterally decided to discontinue Zach's t-shirt advertisement on their web site and autism speaks had nothing to do with it. When I challenged the various members of ND who were using this as an excuse to bash autism speaks to prove me wrong they were not able to do so. It turned out that neurodiversity's cause celebre of the month was completely bogus.

I also emailed the research department at Autism Speaks, complaining about the fact that they fund the Lauren Mottron lab who employs Michelle Dawson, an anti-cure propagandist. They responded that research grants were carefully reviewed. Though I was not happy with their response they did give me a response and were polite and helpful.

If the members of the ND movement who ask this question are really interested in an answer why don't they just contact AS and ask them and find out what their answer is for themselves. Or maybe they don't want an answer to this question. Maybe they just want to use this as an excuse to vent their anger. Perhaps this is a thinly veiled marriage proposal, hoping that somehow they can acquire the millions of dollars of ready made capital so they can more easily pursue their own agenda. If neither one of those scenarios are true why don't these people just ask AS why they have appointed no board members with autism. I suspect they would get an answer of some sort. Even if they don't it won't hurt to ask What is the harm in asking? Or maybe ND has some ulterior motive for asking this question on the internet without contacting autism speaks and getting their side of the story?


jypsy said...

Sat, 19 Feb 2005 16:01:12 -0400

The first time I asked them that question.

jonathan said...

The first time for what? Not sure what you are talking about Jypsy. You asked autism speaks why they have no autistic board members? What was their response

jypsy said...

Yes, (sorry, my first, longer comment disappeared when I hit "publish") that was the first time I asked Autism Speaks why they had no autistic board members.

I didn't get a reply.

Subsequent emails asking the same question got no reply.

Other emails to them asking other questions have gotten the same no reply.

Some emails asking questions have gotten answers to questions I didn't ask along the invitation: "If you have other questions after reading the above link, please let us know and we will be happy to try and explain it further.". However, it turned out they would not in fact try to explain further, they would, in fact, not reply.

Anonymous said...

Why did you insert Anna Nicole in your article? It makes no sense.That woman died long time ago and she should rest in peace.

jonathan said...

Jypsy- Sorry they did not give you a response. Perhaps you should try phoning them. When I phoned them when the young man was falsely accusing them of trying to stop his t-shirt, they answered my phone call and directed me to the person in the communications department and were helpful in explaining that they had no part of it. Ditto- when I sent them an email urging them to discontinue funding of the Mottron lab, though they would not stop their relationship with Mottron and michelle dawson, they did give me a response. I recommended phoning them if you had such bad luck with email. Also Mike Stanton tells me he has contacted them and is trying to find out why they have no autistic members on their board. Hopefully at some point they will give an answer.

jonathan said...

Hi anonymous the reason for the analogy of Anna Nicole was that one has to question her motivation of marrying an 89 year old man when she was 28 years old. The fact that he was a billionaire seems to have something to do with it. Ditto for neurodiversity's apparent interest in having an autistic serve on the board of an organization they have gone at lengths to show how much they hate. I was wondering if the millions of dollars they have might be an incentive for the ND's to chuck their principles out the window and maybe try to "marry into" this organization the way Anna Nicole married the billionaire. I think it is an apt analogy. If because you are autistic and suffer from impairments in abstract reasoning and still don't understand the analogy I really can't explain it any better than that.

jypsy said...

I don't do phones.

If they wanted to answer, they'd answer my email.

If they wanted to answer my question, they'd answer the question I asked.

I have asked more than once since Feb. 2005. I have *never* received a reply.

Maybe that is the reason some others are asking publicly; asking Autism Speaks yielded no reply. Maybe not, but, since you asked, that is my (repeated) experience.

jonathan said...

If you don't "do phones" then I am not satisfied that you pursued the matter vigorously enough. I agree, they should have answered your email and given you a serious answer. I agree it is a legitimate question that deserves a legitimate answer even though I question the motives of most of those who are asking it. I just know my experiences with them both by phone and by email which I described previously were quite different from yours.

As far as I can tell you are so far the only person who has made any attempt whatsoever to ask them this question, other than Mike Stanton whose results of trying to get an answer I am still awaiting.

jypsy said...

I don't think an autism organization should force me to communicate verbally, on the phone, with them in order to get a simple answer to a simple, politely asked, question.

You might not be satisfied that I pursued the matter (and others) vigorously enough, but I am.