Wednesday, September 23, 2009

An Open Letter to Laurent Mottron

September 23, 2009


Dr. Laurent Mottron

Centre de recherche Fernand-Seguin

Hopital Riviere-des-Prairies

Montreal, Canada


Dr. Mottron,

I am calling on you to denounce the Autism Speaks video “I Am Autism” as hostile and offensive to autistic individuals, and I am calling on you to reconsider your acceptance of funding from Autism Speaks, an organization that is exploitative of autistic individuals, and unscientific and unethical in its day-to-day practices and fund-raising campaigns.

As the parent of an autistic child who is loved deeply for all his characteristics, including—indeed, most especially—his autism, I can tell you that the “I Am Autism” video is disgusting on every level. It perpetuates stereotypes, it presents as fact statements that are not backed by a shred of scientific evidence, and it exploits the images of autistic individuals without their consent. The video is heinously reminiscent of the NYU Child Study Center's widely condemned Ransom Notes campaign, and it demonstrates the depths of cruelty and ignorance to which an autism charitable organization can sink when that organization deliberately excludes the input and participation of autistic individuals.

As you know, I hold the work of both you and your research team in the very highest regard. Your efforts have contributed to the knowledge about the strengths of autistic individuals and have highlighted the many positive contributions autistic individuals have to make. While I understand the difficult task you face in running a research enterprise and in obtaining adequate funding for your work, you must realize that accepting significant money from Autism Speaks, an organization openly hostile and offensive to autistic individuals, serves only to undercut the very nature of your work. No matter how alluring or seemingly harmless such funding might initially appear, in the end association with an organization such as Autism Speaks becomes all too obviously, and all too tragically, a pact with the devil.

Openly denounce the “I Am Autism” video. Use your influence as a respected autism scientist to urge your colleagues to do the same. And if your efforts to reform the deeds of Autism Speaks do not succeed, I call on you to reconsider the wisdom of continuing to accept funding from such a repulsive organization.

The harmful practices of Autism Speaks survive only on the tacit approval of those who should know better. It is not too late for you to make a difference: remove your tacit approval.


Respectfully and urgently,

Alan Griswold

9 comments:

Catana/Sylvie Mac said...

The "Ransom" campaign was bad enough. This one is so openly despicable that it's already creating a firestorm of opposition. On a positive note, Autism Speaks may be unintentionally responsible for many adults like myself to start identifying as autistic rather than as having Asperger's.

Ralph said...

C/SM, re usage "autistic" is the equivalent of LGBT (includes all people/diagnoses on the autism spectrum) - go for it! :)

Catana/Sylvie Mac said...

Good point. I hadn't thought about the parallel, but it's all about inclusiveness. Autism Speaks, whether deliberately or not, and I think it *is* deliberate, profits by divisiveness.

jonathan said...

Why don't you post a letter to Michelle Dawson, who is now publically criticizing this video, and urging her to resign from the Mottron group in protest. When I asked her why, if she hated autism speaks so much, she continued to work in the Mottron group which has received half a million dollars in funding, she only came up with the response, "science isn't politics"

Catana/Sylvie Mac said...

Asking her to put pressure on the Mottron group is one thing; asking her to resign is another. She has no degree and Mottron has given her the opportunity to do research and publish papers that can have an impact on how perceptions of autism are changed. As an independent scholar, I would have a lot of trouble denying another autistic this opportunity. Sometimes, we have to make difficult calls. In this case, I agree with her in her decision to separate science from politics. We also have to separate hasty emotional reactions from considered responses.

Alan Griswold said...

Jonathon,

As far as I know, Ms. Dawson is not responsible for the funding decisions of Dr. Mottron's research team, and besides, I believe she has stated publicly (on the TMOB board) that she was not happy about Dr. Mottron's acceptance of a large grant from Autism Speaks. I see no example where Ms. Dawson has been inconsistent in her statements about Autism Speaks, and I see no example where she has given that organization's harmful practices her tacit approval.

I doubt that very few of us work for employers whose hands are perfectly clean, and I doubt that very few of us live lives that are entirely without ethical stain, so I think a holier-than-thou attitude is not going to be particularly useful. I trust each individual can weigh the pros and cons of their decisions and act accordingly, and that goes for you, me, Ms. Dawson, Dr. Mottron, or anyone else. My role is simply to remind individuals associated with Autism Speaks that the organization is openly hostile to autistic individuals and thereby does immeasurable harm. My role is to remind those individuals who are associated with Autism Speaks that when they remain silent about such atrocities as the “I Am Autism” video, they are giving their tacit approval.

My hope is that those who are associated with Autism Speaks will not remain silent about the video. My hope is that those who are associated with Autism Speaks will begin to take a vocal and principled stand. And my hope is that Autism Speaks will begin to feel the urgency to reform its ways (by including autistic individuals, for instance). Beyond that, I am willing to leave decisions to the conscience of each individual.

Where's your conscience, Jonathon?

jonathan said...

Hi Alan, I guess I have misplaced my conscience, maybe i left it under the bed, but I have not bothered to look as I would prefer finding a cure for autism than finding my conscience. Perhaps, at my relatively advanced age, it is too late for me, but i hope a cure can be found so others don't have to suffer as I and others have.

Alan Griswold said...

Dr. Mottron's reply to my open letter can be found here.

Michael said...

I am a parent of a child with High Functioning Autism.

What is the benefit of portraying Autism as some dark malevolent enemy? Are we trying to scare people?

This video is truly cringeworthy.

Michael