Wednesday, June 17, 2009

Has autism speaks picked up the tab for neurodiversity propaganda?

In a follow-up to my previous post I would like to pose the question about some things that I find rather ironic. Ever since its inception, the organization autism speaks has been the favorite whipping boy of the ND anticure movement. They have all expressed their contempt towards the organization. They have claimed the organization is deliberately trying to find ways to abort autistic fetuses, they have claimed that their goal of curation would only destroy autistic people by turning them into different persons. Some of them have claimed some sort of responsibility for the murder of Katie McCarron and possibly others with autism. This was likely based on the admittedly dumb remark made by Allison Tepper Singer where she fantasized about driving her car off a bridge with her daughter in it. To borrow from Richard Nixon Ms. Tepper Singer gave neurodiversity the sword and they thrusted it with relish.

Another absolutely bizarre complaint about autism speaks frequently made by ND proponents yet no one else is the absence of an autistic member of the board of directors. One wonders how they would feel about a pro-cure autistic being on that board. Would he/she receive the usual nasty neurodiversitite slur of being a house autistic or token autistic or quisling. If only an anti-cure rather than a pro-cure autistic should be appointed to the board of directors then one wonders why people should be appointed to the board of directors of an organization whose goals they totally oppose. I also wonder why not having an autistic member on the board of directors is a more important concern to club ND than the fact that as far as I can tell autism speaks does not have a single paid employee with autism working in their organization, not even as a minimum wage file clerk with a job coach. Autism speaks apparently spends money on huge executive salaries, private jets and possibly some other frills, yet can't help one of the many persons with autism who are unemployed make a living. This phenomena is especially intriguing in light of the autism in the workplace horse and pony show that AS puts on where they highlight employed (or in some cases semi-employed) persons with autism, talking about how urgent the problem of autistic unemployment is and how great these others were employing some autistic people. Apparently they take the attitude, it's fine if autistics work someplace else, but we don't want these incompetent, badly behaved people (from their point of view, not mine) screwing up our organization. How typical for those in neurodiversityland to miss the forest for the trees.

Clay Adams, one of the most cruel neurodiversity cyberbullies and hatemongers, is apparently dumbfounded that I could be a pro cure autistic and write posts on this blog to this effect. I must be a paid shill for generation rescue or autism speaks, there can be no other explanation for my behavior he has claimed. I must confess here that once in my life I did accept a free meal from autism speaks when my friend Matthew Belmonte who has his research funded by AS was in town and I met with him, Portia Iverson and some other people. Interestingly enough, I sat across the table at this dinner from the eminent Dr. Laurent Mottron whom I will write more about below. Dr. Mottron and I had a chat, he seemed somewhat intrigued by me and I discussed my job problems with him and he was curious why i was fired from various jobs and I told him about some of the issues I had; of course this is neither here nor there. I also was a research subject of Eric Courchesne's and received a small amount of money from his group for participating as his subject. I think some of this research may have been funded by CAN, the predecessor of AS. Now that I have declared these possible conflicts of interest, I will go on record that other than these trivial exceptions I have never received a dime from autism speaks or any other pro cure organization ever. I have never received a single dime from any of the posts that I have written in this blog.

Paradoxically, one of the things that seemed to inflame Mr. Adams the most about me was that I had the temerity to criticize his idol, Michelle Dawson. He stated that he wanted to give me a black eye for this. Why is this a paradox? Well Michelle Dawson works in the group that Dr. Mottron heads who was at this autism speaks dinner and conference in Los Angeles, because he happens to be a recipient of this funding. According to the AS website in 2008 he was awarded a grant of nearly half a million dollars. For some reason Adams was concerned that I was on the payroll of AS or some other likeminded organization, but apparently had no qualms about Dawson's involvement with this organization. I am still baffled by this paradox.

I wondered if Michelle Dawson had any involvement in any of the autism speaks funded projects that the Mottron group conducts. Yesterday I had my answer when I found out about the new study that Dr. Isabelle Soulieres recently published. Michelle Dawson was indeed a coauthor. This study was partially funded by Autism speaks!

I wrote in the previous post about how the Mottron group may be putting a rather disingenuous spin with the media on this research so I won't repeat all of that here. However, I would like to print one additional statement that Dr. Soulieres made to the media about the implications of her newly published and completely unreplicated study.

I hope the finding will convince people that autistics have a higher intellectual potential," said lead author Isabelle Soulieres, a post-doctoral fellow at Harvard who completed this experiment in Montreal. "That way, people will expect more and give them more opportunities to learn

I see that Estee Klar-Wolfhond, author of the Joy of autism blog, has given this study a shoutout in her latest post. How soon will other neurodiversity autism speaks haters follow suit? Since this study has just come out I suspect there will be more takes and more spins on this study and the absolutely unproven allegations that the results could help autistics learn better or function better in society. How soon will it be before Soulieres, et. al. means that finding a treatment, cure or prevention will be absolutely superfluous according to the ND spinmeisters? I suspect we will be seeing more from them in this vein.

One only has to wonder how people who urge a boycott of Lindt Chocolate, Toys 'R' Us and other companies that help donate money to autism speaks can reconcile the fact that their idols Mottron and Dawson have accepted so much money from this organization? How will they be able to reconcile their boycotts yet ignore the fact the organization they loathe so much has paid to help them spew out their propaganda that autism is not a disease but only an alternative way of being and that with the right accommodations they can do anything a nonautistic person can do. The Soulieres study will likely be used as evidence of this, as was Dawson (2007) when it first came out.

I can only wonder about these things and see what happens but I reckon only time will tell.


Ender said...

"Nothing about us without us", has long been the motto of the disabled community, long before neurodiversity was even thought up. It was a rally cry during the days of "Deaf President Now" back in the '80s and probably even before then. A pro-cure autistic is preferred over no autistic, better yet both sides of the autistic debate from within the spectrum should be heard. How about you and me?

farmwifetwo said...

And if those with Autism (I dislike Autistics but it's my opinion only) are now learning better, are now about to live with their symptoms better, can now hold down jobs, marry, have children.... Are you not "curing" them????

Isn't the ND crowd anti-therapy?? Wouldn't the research lead to new therapies for autism?? New medications that can emulate those therapies??

Just some other thoughts.


......I'm Anonymous said...

"Isn't the ND crowd anti-therapy?? "

Perhaps you can point to a link on the official ND position on therapy? That would be very helpful.

Ender said...

There is no official position (it comes from them being so loosely affilated), but no they generally aren't anti-therapy, or at least I am not. To me there is a difference betweent changing the way the mine works (which even Jonathon believes would exist with a cure), and making it so they can work with their mind. Course then again, I am a moderate ND in many areas.

Anonymous said...

Why is today, June 18th, Autistic Pride Day?

I'd love to locate a source that explains whether the 18th of June was the birth of Neurodiversity and the customs autistic people partake in to celebrate this so-called holiday besides holding annual themes of being proud to be on the spectrum that's not even close enough to being a second-tier holiday.

I guess autistics from Neurodiversity celebrate this holiday as a way of masking their feelings of loneliness, bad experiences, forgetfulness and confusion of the purpose and differences between some American and second tier holidays.

Anonymous said...

Neurodiversity is a way of using therapy without anyone a part of it realizing it....though some may recognize this subconsciously.

The same thing goes for Autistic Pride Day.

jonathan said...

Jedi is just another form of denial and reaction formation the key Freudian defense mechanisms of the neurodiversity movement.

Portia said...

I am in awe of anyone who can write such high quality 1200+ word blog posts such as this one! You are an excellent writer and I appreciate hearing your thoughts and positions.

Best regards, -Portia Iversen

jonathan said...

Hi Portia: Assuming this is really you and not a sock puppet posing as you, perhaps you can explain to me why in the world Autism speaks on which you are on the board of directors of would give half a million dollars to Laurent Mottron, a man who is against curing your son, Dov, who says that his autism is not harmful and in whose research studies your son would never be in his research subjects. In addition to the fact that Michelle Dawson who has coauthored this work with him and Dr. Souleries says that people like you are intolerant and make her sick and claims that your organization wants a short future for autism. I would be very interested in hearing your explanation.

But anyhow if it is really you, thanks for stopping by and for the compliment.

jonathan said...

correction, I meant to say that michelle dawson claims autism speaks wants a short future for autistic people, so i don't understand why autism speaks would fund a research group that she works in.

Yuval Levental said...

I know that this is a very old post, but I was recently thinking of that "Autism Every Day" video. Based on Wrong Planet's portrayal of that video, it was one of the reasons that I used to support Neurodiversity.

The title they put up is false. She did not murder her daughter.

Additionally, in the actual, uncropped video, she initially said "these schools are completely overcrowded, the children do not make progress", referring to public special education schools for autistic children with horrid conditions, such as the possibility of abuse, which she thought she had to send her daughter to. She then contemplated driving off the bridge, then said "it would be preferable to putting her in one of those schools."

The full video (starts at 6:00)

It was still a dumb remark, but I am also frustrated that Neurodiversity took it out of context and over-sensationalized what she said.

She did apologize and explain what she really said in a later blog post.