Wednesday, November 25, 2009

Do Autism Speaks' assets belong to neurodiversity or ASAN?

As regular readers of this blog know, in my last post before this I wrote about ASAN's latest protest against Autism Speaks latest fundraiser in NYC, questioning on what impact they may or may n0t have had on AS. I also wrote about Marc Rosen's interesting take that ASAN's demonstration was a success. I commented on the inconsistencies of neurodiversity's claiming that no one should support autism speaks by donating money to them or in Jerry Seinfeld's case, performing as an entertainer for them to help them raise funds, yet having no problem at all accepting the half a million dollar grant that their scientific representative Laurent Mottron and his factotum Michelle Dawson received. Michelle Dawson's response to why she continued to work with the Mottron group and other AS funded researchers was "science isn't politics". I thought this was an absurd response. However, now, it seems quite sane compared to a response some character named "Charles" made on Marc Rosen's comments section in his blog or examiner article or whatever it was. Charles responds to my query as follows:

We condemn Autism Speaks because of its overall position and actions. We -- neurodiversity/autistic rights advocates, or whatever you want to call us -- do not condemn 100% of what Autism Speaks does. To do so would be very difficult to defend and indicative of prejudice. No organization, not even the worst of them, is 100% bad. Acknowledging such is not hypocrisy or a conflict of interests. Any monies channeled through Autism Speaks never belonged to them in the first place. It's charity, grants, etc., raised on the backs of Autistic people, and as such, it is rightfully OURS to direct as we see fit. If Autism Speaks sometimes happens to direct some of that money to the right places, (which places are right is a separate issue), our position against Autism Speaks does not require that we condemn that. If Autism Speaks did not exist, those who deserve funding would still get it. Autism Speaks does not create money; they merely GATHER it.

What does Charles mean by "ours"? Does he mean all autistic persons on the planet, myself included? Then does he have a right to speak for me? It sort of is reminiscent of Harold Doherty's concept of the royal we. Assuming there has been no increase in prevalence in autism and there are more autistic adults than children, we can still presume that perhaps as many of one-third of autistic persons have not reached their majority and legally their parents can make monetary and other decisions for them. Does this include them? Does this include nonverbal autistic adults such as John Belmonte who are not in a position to communicate how this money is spent, possibly others who may be under a conservatorship? However, since Alex Plank, Dawn Prince-Hughes, Michael John Carley and others have claimed that "most autistics don't want to be cured" when there is no evidence whatsoever to back up that contention, does Charles speak for all or most autistics or is he speaking for neurodiversity? Or perhaps more specifically he is speaking for ASAN. He seems to think that all of the millions of assets of autism speaks. Perhaps even the multimillion dollar fortune of Bob and Suzanne Wright themselves belongs to ND or maybe even just ASAN to spend as they see fit.

One can even delve further into the matter by examining whether just because the word "autistic" is used in fundraising whether or not this even applies to persons like Ari Ne'eman, Marc Rosen or Charles. Before there were changes in the diagnostic criteria for autism Ari Ne'eman would not have been diagnosed as having autism since he had no speech delay and was in fact able to name various types of dinosaurs at age two. Had there been no change. Ne'eman's diagnosis would still be ADHD. Most of the parents and others who are involved with autism speaks have persons whose clinical picture is most likely different from Ne'eman's and other ASAN members. They are persons who are (or were at one time) nonverbal. Can't care for themselves and have problems that are not like probably most ND advocates. In spite of Ne'eman's slogan, nothing about us without us, the things that AS fundraises are probably not about him and other ND's so perhaps an argument could be made that there is nothing wrong with it being done without him and his ilk. So perhaps the collective "ours" does not even apply to Charles and whomever else he is referring to.

I still remember the statement of one of my readers, Roger Kulp, who stated that Neurodiversity wanted to take over autism speaks by infiltration and a smile comes to my face. Is Charles recommending that neurodiversity engage in some sort of 1917 style Bolshevik revolution where there is a communist takeover of AS and they can just take the assets of autism speaks as the communist thugs in Russia did with the Czar's fortune? Does he believe that the federal government has a duty to seize the assets of autism speaks and give it to Ari Ne'eman and himself and others? Sort of like Robin Hood perhaps. The statement certainly smacks of communism and all of the atrocities that have happened in Lenin's or Stalin's Russia or other iron curtain countries, or in Red China, where everything belongs to "the people".

Particularly intriguing is his statement that autism speaks does not create money, they gather it. Then aside from the U.S. government, who else creates money in the U.S. (excluding illegal counterfeiters of course)? This means Microsoft, IBM, Union oil and Bank of America and even the mom and pop grocery store down the street gather money. So, does this money just belong to the people who voluntarily did business with those places?

The Wrights worked hard to obtain their capital and to build autism speaks as well as the mergers with CAN and NAAR. Even though there may have been misleading advertising on autism speaks' part to obtain the funds, as far as I can tell they did nothing illegal. All of the persons who donated money, went on walks or went to the Seinfeld/Springstein event did so voluntarily. Why does not autism speaks have the right to spend the money how they see fit? If anyone does not like how autism speaks spends their money, they don't have to donate or accept services provided by AS funds or a scientist does not have to accept funding from AS either. I doubt that Charles or any of his other collective "ours" whomever that might be has donated a dime to AS.

Where does Charles (and possibly other ASAN members) get the idea that the money somehow belongs to a certain collective of persons, apparently as far as I can tell the ND movement and no one else? I wonder if any readers of autism's gadfly agree with Charles that the assets of autism speaks rightfully belong to neurodiversity or ASAN. In my opinion they do not. However, I welcome others opinion on the matter.


SM69 said...

I have not posted here for a while but it is hard not to make a comment at this time.

I have recently tried to join the Yahoo ASAN group, as a parent of my autistic son. My son cannot stand for himself and cannot access the information that may be circulating in that group, which claims to be serving autistic people. This means, ASAN does not allow his voice, (which I am the only person on earth able to represent), to be heard. Perhaps Ari, would like to give me a good explanation for his refusal for him to be represented?

Second, it is apparent from the interviews conducted in NYC at the Autism Speak concert, that those interviewed where totally bewildered by the questions asked. I don’t want to be cured… sorry, but why do you think people want to cure you? –their eyes seem to be saying, what are you talking about? That is not what Autism Speaks is trying to achieve, evidently. Nor it is to develop a test that would lead to ante-natal abortion of autistic foetuses. The few protesters that were there, might have difficulties, but they need accommodations and understanding, not a cure and Autism Speaks would be the first to agree with that. Their difficulties are evidently on a different scale than the ones experienced by the more severe Autistic people, like my son, and many more like him. The very ones Ari do not want to hear about.

Intervention on any individuals, especially vulnerable children need research and evaluation. That’s why Autism Speaks does exist, independent source of funding is required to look into the issues that surround autism, that's a fact. Without ethical and relevant research, there will always be misinformation about. It is time to refocus the debate on what matters in autism. ASAN is able to provide some support to some autistic people at the higher end of the spectrum, good. But their action is countered productive to the rest of the autistic community and they will need to acknowledge this at some point, soon I hope.

Why can’t we all work together with much clearer definition of what we are trying to achieve here, and what specific answers are needed for specific individuals. We always come back to the same issue; the diagnosis of autism as it stands at the moment is very misleading. That and many other still are worthwhile issue that need addressing.

This ASAN/ Autism Speak debate, is a distraction from what matters. Best is to ignore this until true positive actions can be generated from ASAN.

farmwifetwo said...

ASAN fans are peeved solely b/c AS has people that give them money and they can't seem to raise it.

Which tells you that AS has a message that appeals to parents with children (child or adult) with autism. ASAN does not.

If ASAN did have an appropriate message and actually worked to better the lives of all adult autistics, those that wanted a cure or not, then they would raise the money.

But they aren't lobbying for appropriate services, for job training - they do demand autistics are hired, social and behaviour training - can't do that, it's ok for them to abuse others (verbally or physically) b/c they have a dx, they aren't lobbying different States to improve adult services... Oh.. they go to meetings with the Pres so he can say he fullfilled that campaign promise... but do they have something constructive to say or just demands...

People give money to those organizations that they feel represent the issues that are important to them and theirs. That money is not for the "group", it is not being collected for some organization that may have the same dx just b/c that organization cannot get it's act together and prove they are a viable entity.

Sorry... When I give money, I expect it to go to the organization who's name is on the cheque... only. If the "state" ever demanded different, I think you'd find charity donations dropping to zero... What's the point in giving money just for someone else to give it where you don't want it to go... you do that paying taxes.

John Best said...

All autistics want to be cured. All sane people agree on that.

Thus, we may conclude that anyone claiming they don't want to be cured of autism is not autistic. They're just drug company shills and should be ignored, or locked up for fraud.

Anonymous said...

Does anyone have a report which states that Autism Speaks is actually working on developing a prenatal test for autism? This is ASAN's whole debate again Autism Speaks but I couldn't find any real information about it.

ASAN doesn't seem to allow people with a diagnosis of "Autism" in their forums. You can only have a diagnosis of Asperger's, it seems, and it doesn't even have to be official: it can be self-diagnosed.

So long as you agree with everything Ari Ne'eman says than you are welcome.

I don't think Ari realizes that his own disability is getting in the way of him achieving true success with the autistic community.

kent adams said...

I must clarify something here. I am not anonymous on this blog that posted at 5:41am. Though I agree with some of the observations of this anon, such as the ASAN list seemingly being dominated by AS folks and the self diagnosed (though I don't know everyone's diagnosis/lack of diagnosis), I did not post that message.

I've received inquiries if I was posting as anon here. I did not post as anon. If I post, I will use my name.

John Best said...

Ari doesn't want to achieve success. His job is to sell out every person on the spectrum by lying about autism.

Stephanie said...

I was the 5:41 AM Anon.

Yes, it was me.

I admit to the crime.

Jake Crosby said...

Who cares about Autism Speaks? Even if neurodiversity did take them over, in practice, it would make no difference in terms of finding a cure for autism. AS is even funding research of neurodiversity advocates and has considered putting them on its board.

Autism Speaks just makes everyone feel better by uniting them for a common cause while making them feel good and that they're making a difference, with their walks and fundraisers. What they really do is distract people away from critical issues about autism because they are very inconvenient to the agendas of some very powerful people. Bob and Suzanne Wright's own grandson, Christian, the reason for Autism Speaks's own existence, regressed after his vaccines, and yet only about 2% of AS's money even funds environmental research.