Bashing Autism Speaks: My Turn

It seems that nowadays the chic activity among autism afficianados regardless of their stripes is bashing autism speaks, the microsoft of autism research funding. It does not matter where you lie on the autism political spectrum. If you're a member of the mercury militia you don't like them because they are not devoting enough funding to your pet projects or you feel that they are too dumb to realize autism is not really a genetic condition but rather a man made plague, probably by mercury, but in some cases of people who believe in an environmentally mediated increase in autism prevalence possibly something else. If you are someone who believes in the neurodiversity philosophy you don't like autism speaks because you believe that if they succeed in curing autism the person will be changed and they won't be the same person anymore, they will have a different brain. Or, like the mercury militia, you don't like genetic research, but your reasons are that you believe it will lead to a prenatal test where autistic fetuses will be aborted. Another reason you are unhappy is because they have no autistics who serve on any of the boards or have any position of power in the organization.

But why should I miss out on all the fun, even if due to my beliefs I am totally on the fringe since I have a unique view that does not agree with either camp. Actually I prefer to think I am a metaphorical island where I am one of the few persons interested in autism who is not on the fringe, but that is neither here nor there as my buddy Joseph would say.

I am like the high school kid who wants to join the in crowd or some enviable social clique. I want to join in the fun too, so here it is, surprise surprise to my readers who see I sometimes defend autism speaks because I like the idea of scientific research with the goal of curing or preventing autism. I am now going to come clean, I have some real problems with autism speaks, so I am going to join you in bashing them.

It all goes back to the days of AS's predecessor, CAN, before they were gobbled up by autism speaks in the corporate merger common to both for profit businesses and charitable organizations. In the days of CAN and before I retired when I was employed and had more money to throw around, I used to donate money to CAN, $100 here and there. Also, I donated $100 to CAN's eastcoast counterpart NAAR, another organization that existed before AS existed and was also gobbled up by autism speaks. I have yet to donate money to AS and even if I had it I would not donate a dime to them. But getting back to the topic at hand. I discovered that CAN was not the organization that I envisioned. Sally Bernard, one of the mercury militia's leaders, used her considerable wealth to influence CAN and get them to elect her president of the organization. Then CAN started to fund studies that investigated the possibility that thimerosal caused autism. I knew that thimerosal had nothing to do with autism for reasons I have detailed in an essay that I wrote, http://www.jonathans-stories.com/non-fiction/thimerosal.html where I showed there was a tripling in autism prevelance in the california DDS during a time when the thimerosal an infant received in vaccines was stable. So I was rather appalled that they would appoint Bernard to a position of huge power in their organization and would fund thimerosal. CAN also had bylaws in writing stating that they would only fund medical research. They then violated their own bylaws by funding some work Ivar Lovaas was doing. This is in spite of the fact that Lovaas has not published any adult outcomes from his 1987 study in spite of receiving funding from NIMH to do so. I stopped donating money to CAN after that.

Not much later, CAN became extinct after they and NAAR were gobbled up by autism speaks. I hoped the direction that autism speaks would take would be different from CAN, I hoped they would not make some of the same boneheaded mistakes that CAN made, but they did not fail to disappoint me.

Recently I found out that Luc Keita, a post-doctoral fellow that works in Dr. Laurent Mottron's lab receives funding from an autism speaks grant. Dr. Mottron also has a somewhat cozy relationship with autism speaks and attends their conferences, I know because I met him at one. Dr. Mottron also employs that well known activist in the anti-curebie movement Michelle Dawson. Michelle implies in one of her essays that anyone who would want a cure for a severely autistic boy who scratches his sister, damages the families property and keeps them all awake howling at night is somehow an intolerant bigot. Because I want to cure autism and wrote an essay detailing my suffering from autism she states that I want to deny autistic people, of which I am one, their civil rights. In spite of the fact that autism speaks plainly states they want a cure and prevention for autism, Dawson calls them a credible fund raising organization. Either she is a hypocrite or she believes that autistic people are write-offs who should have no rights whatsoever in spite of her rhetoric. What autism speaks does by funding the Mottron lab is in my opinion the equivalent to promoting a private in the army who makes propaganda broadcasts for the enemy during wartime to rank of general rather than court martialing him and prosecuting him for treason. If anyone feels that statement is inflammatory, so be it. Ms. Dawson seems to tell me that other scientists she has worked with have grants from AS. She encourages other scientists to get grants from AS regardless of whether or not they agree with the pro cure philosophy of AS. Dawson argues that science and politics are not intertwined. I disagree. In the case of autism speaks politics clearly begot scientific funding. Bob and Suzanne Wright worked hard to start this organization so their grandson would have an improbable shot of living a better life and not end up being crippled by autism for the rest of his life. The AS walks, the donations, etc. were all most likely begotten by people desiring a cure for autism, many, whom I suspect never heard of the ND movement and would probably be shocked that something like it could conceivably exist. Dawson's statements remind me of the 32-year-old trophy wife who marries the 67 year old billionaire and states that money and lust are not intertwined.

Probably even more bizarre I found out that autism speaks includes on its advisory committees Morton Gernsbacher. A psychology professor in Wisconsin who has an autistic child and does research in autism and wrote an essay entitled autistics need acceptance not cure. Ironically enough she was on some review committees for CAN when it existed also. I am mystified by why Dr. Gernsbacher who believes that autism should be accepted rather than cured would serve on scientific advisory boards of organizations whose philosophies I would think would be anathema to her own. But the more important question is why would autism speaks have a relationship with someone like that. After all, we don't hire John Dillinger and Al Capone to be police officers or FBI agents. So yes, autism speaks is not a terribly bright organization given the fact they would have an affiliation with such people who undermine the efforts and desires of those of us who view autism as a horrific affliction and wish that it could be cured and prevented (not abortions of autistic fetuses but prevented by altering the genetic mutation so the child won't have to grow up as a cripple).

Also, I agree with my pals in the neurodiversity movement. Autism Speaks should have autistic people on their boards or in positions of power, this is another reason I am not terribly fond of them. If a pro-cure autistic such as myself were on the board, they would not make the slip shod decisions of the NTs that run AS do that would actually fund a lab that employs michelle dawson, someone who gives aide and comfort to our enemy, autism The pro-cure autistics would have the intelligence not to allow an anti-cure person like Morton Gernsbacher to sit on their advisory committees. That is why they should not only put me on the board but allow me to run the whole show there. Anti-cure people would not be allowed to be involved with autism speaks, their funding would be discontinued as would the funding of any lab such as the Mottron lab who would employ such a person. anti-cure people would not be allowed to sit on scientific and advisory committees on an organization that has plainly said their main purpose is to seek a cure for autism. It would seem that these would be common sense decisions but apparently all common sense has been thrown out the window as far as the people who run AS are concerned.

But I don't think the neurodiversity affcianados would be happy with pro-cure autistics serving on the board. They would just call us token autistics or house autistics or say we were on the take. There are some who would say, that the majority of autistics don't want to be cured so we are not truly representative. To the neurodiversity people I have this to say, autism speaks is a pro-cure organization, the people who started it, acquired charitable donations, who donated their money to this organization walked the 5 kilometers for autism etc. all likely want a cure. They don't agree with you. So why should they allow you to serve on the board of autism speaks? If you want, start your own charitable organization and raise money to help your own cause. Don't expect to be a trophy wife who marries a much older man out of convenience because there is ready made capital to be had. Do your own work. Or is it that your movement is really so impotent, that you really have no alternative to latching onto autism speaks and try to use their money to promote your misguided agenda?

Zach Lassiter who has gained some celebrity through the t-shirt controversy absolutely had the right idea. I agree with his message that autism speaks does not speak for him and many other persons on the spectrum. These people have asperger's and not autism. They are speaking for people much more severely afflicted than you, so if autism speaks should go away, you should go away too. Go away neurodiversity asperger's people, you don't speak for me and you don't speak for autism speaks and there is no reason why you should. Zach if you happen to read this, thank you very much for your message that you printed on your t-shirt. If you want to make some money, Zach, maybe you could make another t-shirt and sell it to some pro cure people, particularly those involved with autism speaks and have the message on it:
"You don't speak for autism speaks, autism speaks speaks for itself, go away neurodiversity."

In the same vein, Sally Bernard and her minions don't need to serve on the boards of autism speaks or CAN. Sally and Tom's net worth is 15 times larger than autism speaks' assets if I am not mistaken. Clearly they can afford to start their own organization, they already have with SAFE MINDS. They can acquire all the capital they need to pursue their misguided agenda.

Well that is my bash of autism speaks and my take on things, I am glad I did not get left out of the party and I hope that all of those people who thought I was the only person left on the planet who liked autism speaks are happy.