Monday, September 28, 2009

Autism speaks kowtows to neurodiversity

I see from reading Alan Griswold's autistic aphorisms blog and the infamous "execute pro-cure autistics and turn them into cat food" autism bitch from hell's blog that Geraldine Dawson, chief science officer of autism speaks, has written a canned response to the various pro-neurodiversity anti-cure proponents who took umbrage to autism speaks' I am autism video:

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso CuarĂ³n, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.


While Geri Dawson's statement that AS removed the video from their website may not have been an outright and deliberate lie as they did kowtow to the ND fringe and removed it from their home page, the statement was not factually accurate as they still have the video on a more obscure place on the webpage. Both ABFH and Janet Norman-Bain have called Dr. Dawson on this fact.

Geri Dawson and autism speaks have nothing to apologize for in making this video. Drastic videos showing what a horrific disability autism is are certainly necessary to generate funding so that research can be done that will cure or at least find a way to mitigate this horrific disability at some point in time. Instead of trying to dissassociate AS in general from the videos and just attribute this to the two filmmakers only makes AS and Geri Dawson look obsequious and reduces their credibility as a fundraising organization which claims that they are looking for a cure. There is no need to mollify these people. Certainly persons such as ABFH who suggest executing me and turning me into catfood is a good idea are not even worth trying to have a respectful dialogue with. Her offense at this video should be taken with a pillar not a grain of salt.

Unfortunately this letter only kowtows to this fringe cult who don't want autistics and others with related disorders to have a shot of living a decent life and want the pain and suffering that autism causes to continue. While I realize it might be impolitic of her to tell Alan Griswold, ABFH and others to fuck off this is the attitude that they should take.

Another alternative would have been the type of response Jon Shestack gave me when I first met him in the pre autism speaks days when his CAN was neurodiversity's favorite whipping boy. I pointed out to him that there were some people with autism that did not like what he was doing. He replied: "Their problems are nowhere near as severe as my son's are and if they don't like what I am doing, too bad." I realize this response might be considered impolitic also, but certainly it is the attitude that autism speaks should take and yes, Geraldine Dawson should have just said, 'too bad' if you don't like our video.

Or perhaps the most diplomatic and politic response would be that autism is a serious problem for at least some, even if the mild ASD's that ND's or their relatives have in many cases that they can respect the rights of others to pursue fund raising the way the other side sees fit whose problems are far more serious than theirs are.

Anyone who can read between the lines can see what a disingenuous snow job Dawson's canned response was. In addition to the inaccuracy of her statement that the video had been removed from AS' website, certainly this video reflects the overall view of autism speaks as well as likely most of the relatives of autistic persons who go on walks for AS or donate money to them. There is no reason for AS to soften the tone of their message of what a horrific disability this is ,nor to worry about offending persons in the fringe cult of ND. A respectful and compassionate attitude towards those with autism is not taking an ND perspective but acknowledging the harsh realities of autism, the fact that it is a disease, a disorder and not merely a difference and funding scientific research that might enable them to live better lives and maybe even ultimately find a cure.

Addendum: Clay Adams was kind enough to point out to me that I originally misspelled kowtow as cowtow, an error true, but I suspect a common one. Though I appreciate Clay bringing the error to my attention, I usually won't publish his comments on autism's gadfly.

9 comments:

Autism Reality NB said...

You are right Jonathan, Autism Speaks has bowed before the Neurodiversity "autism is beautiful" crowd.

jypsy said...

If you're taking corrections, my name is my last name is "Norman-Bain", not "Bain".

jonathan said...

Okay, thanks, Jypsy, I stand corrected, from this point onward I will refer to you as "Norman-Bain".

I think we are sort of on the same side on this one though as I think we are both in agreement that autism speaks has been disingenuous in their response to those interested in autism and the issue of the controversial video.

jonathan said...

Jypsy: I corrected your surname in the original post.

Foresam said...

AS and Neuroinsanity are both anti-cure. They just promote the same message in different ways.

shestack said...

Jonathan,
I don't remember those exact words, but I certainly agree with them today. My son can't get dressed himself, speak, drive a car, cook himself a meal or even have friends without the help of someone else.Work is unlikely, privacy unattainable; so many of the things we take for granted are unavailable to him because of his autism. He does not like it. HE wants to be rid of it, the way someone else might want to be rid Parkinsons or MS.He does not believe that it defines him.

I am always stunned by the small-mindedness of the neurodiversity crowd and their hang-up over semantics.My son and the ND people do not have the same disease and certainly not the same challenges and limitations in life. Why they would begrudge me my work in support of my son's freedom, I do not know.

Normally, I wouldn't give two thoughts to these folks, but recently they have gotten attention from the press, who thinks that it is newsworthy that a
few people got their dignity wounded.This is not a story. A story is that probably over half of people with autism remain non-verbal--smart, but practically helpless and unable to communicate. Yet
NIH does very little on this subject and Autism Speaks not nearly enough and the Simon's foundation nothing. This is a story. This is a crisis.

As for the video, I have to say , it was a bit over-the-top.Tough messages are needed, but this did veer towards self-pity and no matter how tough or inconvenient autism is for me, I know it is much worse for my son.

Thanks for letting me rant,
Sincerely,

Jon Shestack
founder of Cure Autism Now,board member of Autism Speaks

Ian said...

I'm surprised to read that there is a "fringe cult who don't want autistics and others with related disorders to have a shot of living a decent life and want the pain and suffering that autism causes to continue." I've been reading a lot over the past year and haven't run into that viewpoint yet. In fact, from what I've seen, the one point in common among all different viewpoints is that everyone wants to end the pain and suffering.

jonathan said...

Ian, neurodiversity says they don't want autistics to be cured, no matter how severe their autism. Their alternative to cure is "acceptance". No sane or logical person believes that "acceptance" will enable an autistic person to talk, care for themselves, hold down a job, or have a spouse, so I don't buy that acceptance is an alternative. Until the ND's come up with a real alternative to the lack of language, nonverbal aspects of severe autism and the inability to hold down a job or relate to people that befalls higher functioning autistics, I will stand by my statement that these people don't care at all about the pain and suffering that autism really does cause. They fact that they would complain when people would talk about real problems of at least some autistic people and they find this offensive, and intimidate the nebbishes at autism speaks into making even a half hearted apology and removing it from their home page shows that I am correct.

Until they come up with a real alternative to the problems (real problems) caused by autism, then I stand by my statements about ND. If you have any alternatives to finding a cure, I certainly welcome them. However, I would be curious as to how an autistic person could truly function adequately in society without a cure in spite of Ari Ne'eman's "being anti-cure is not being anti-progress" baloney.

Anonymous said...

Right on, brother.