July 10, 2008

Autism Speaks Supresses the Free Speech of People with Autism

Rather than listening to the legitimate criticism that Autism Speaks is being offered from the neurodiversity community (like the fact that people with autism are not allowed to speak at their events, even though their name is "Autism Speaks"), AS instead threatens to sue them.

Even for legal parodies, even for t-shirts that say, "Autism Speaks can go away. I have autism. I can speak for myself."

Pretty poor behavior for the org that refers to itself as Autism's "Big Tent".

(But really, if they don't listen to fellow parents like us who are looking for treatments and supposedly have the same goals as them, are we surprised that they don't listen to adults with autism who oppose "cures"?)

And its weird because, really, the point of all the of the stuff that we are doing to make our kids better is so that they CAN one day advocate for themselves, right?  I mean, I disagree whole heartedly with the idea that finding a "cure" for autism is wrong, and somehow devalues people with autism, but I earnestly pray that my son will be an adult who is healthy and functional enough to process complex abstract ideas like human value and have t-shirts printed up to espouse his thoughts on the matter should he get a hankerin' to do so.

I know this may sound odd, but the fact that there are people with autism out there that can use cogent arguments to tell me that they think that I am jerk is encouraging to me.  It means that it is possible that my son who wouldn't see danger coming if it was wearing a t-shirt that said, "I am danger" on it, might one day not only be able to comprehend and defend himself against concrete threats to his safety, but abstract, theoretical threats to his self image.

It gives me the hope that someday, Chandler could be a sixteen year old that borrows the car and stays out past curfew, yelling "I hate you, you have ruined my life" when he gets grounded and can't go to the foot ball game on Friday, just like most every other teen age boy has done at one time or another.  ... and the idea of loosing an arguement with him, and having to apologize to him, is just to beautiful a thought for me to hope for.

If AS first priority is squelching criticism of their organization by people with autism, there is a much cheaper way to do that.  Stop looking for a cure and don't teach people with autism how to talk.  That way, you save money on both ends, you don't have to spend it on research and speech therapy now, NOR do you have to spend it on lawyers to get them to shut up later!

When reaching your goals for autism means stepping on people with autism, it is time for you to get out of the autism game and just go back to being a corporation that just steps on the regular ol'e consumer.

UPDATE:  So it appears that in the case of the t-shirt, they did not threaten to sue over that specifically, but since they had contacted the tshirt company before about shirts with their name on it, said company decided to nix the one in qestion pre-emptively.

He jumped to the conclusion that AS did it.

But they still bullied a 14 year old over a parody site.


Judith U. said...

Hey Ginger, you might want to check out Zach's web site. Turns out this story isn't actually true:


Autism Speaks did not sue him or even contact Zazzle.

concerned heart said...

Autism Speaks neglects to warn the public that advancing paternal age is responsible for a large number of cases of autism. Its own scientist worked on this research: Clara Lajonchere, Vice President of Clinical Programs. This organization rakes in the money but does not try to prevent autism.


: Mol Psychiatry. 2007 May;12(5):419-421.Paternal age and autism are associated in a family-based sample.Cantor RM, Yoon JL, Furr J, Lajonchere CM.
[1] 1Department of Human Genetics, David Geffen School of Medicine at University of California at Los Angeles, Los Angeles, CA, USA [2] 2Department of Pediatrics, David Geffen School of Medicine at University of California at Los Angeles, Los Angeles, CA, USA [3] 3AGRE Consortium, Los Angeles, CA, USA.

PMID: 17453057 [PubMed - as supplied by publisher]

The paternal age distribution of the AGRE fathers, whose first child is autistic differs significantly from that of the 'control' sample (P=0.005). A 2 goodness-of-fit test with 2 degrees of freedom was conducted using percents in the 'control' group age categories to calculate the expected values in the AGRE sample. The shift toward higher paternal ages in those with an affected first-born is seen most dramatically in the group of AGRE fathers who are 30–39 years inclusive, which is 54.7% of the distribution compared with the 41.9 % that is expected. We interpret this shifted age distribution to provide support for the recently reported finding by Reichenberg and co-workers that autism risk is associated with advancing paternal age.

Not said...


I'm with you. How many millions of dollars has Autism Speaks raised? TONS! Yet, what have they really done for our children. Diddly squat in my opinion!

Parents need resources that can actually help them. I just started putting together my new website to try and deliver a new message to parents based on the success my wife and I have had with our autistic daughter. It is still in the works but should come together soon. Would love your feedback...

Not Autism - Delivering a New Message to Finally Help Our Children