[Dr. Laurent Mottron has replied to my open letter to him, and has given his permission for that reply to be posted here.]
I see three alternative ways to change a damaging system/ideology: fight it directly, build something else which is more convincing, or lastly, become the head of this system, then change it. I would call the last one the gorbachevian position. Whereas I used the first two ways at various levels (specially in our clinical organization, and in various influences we have as policy makers in Quebec), I chose the third way for science. Because no scientific person will listen to you if you are not one of them. So we apply to regular journals, and to regular peer-reviewed grant committees.
I have the same profound repulsion for this video as all of you have. I do not fear the possible consequences on the neutrality of the Autism Speaks jury because of public declarations against some aspect of their work - you know that Gadfly repeatedly writes that Autism Speaks should not finance us. But in the meantime, I will go on applying to these committees, and spend their money when we get it, for the best research we can do with it. For example, I. Soulières' fMRI paper has been financed by these funds. I profoundly think that the long-term effect of this research is more important than the ethical issue raised by the way AS gets this money.
Lastly, this organization (Autism Speaks) is heterogeneous. Its peer review committee functions according to democratic, non-ostracizing and scientific rules, although parts of Autism Speaks' ideology and fund-raising style are terrible. Overall, I do not feel condemned to a global rejection of this organization.
Friday, September 25, 2009
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Thank you for your thoughtful reply, and thank you for speaking out against the “I Am Autism” video.
I think all of us can appreciate the difficult challenges you face in making funding decisions to support your research work, and trust me, no one more than me would like to see your team's excellent efforts well funded, well encouraged and well known. However, I will ask you to give some further reflection to one of your sentences: “I profoundly think that the long-term effect of this research is more important than the ethical issue raised by the way AS gets this money.”
No one questions the value of good autism research, but I think too many scientists have turned a blind eye to the negative and exploitative portrayals of autistic individuals now being used to fund a large portion of this research (the “ethical issue”). Autistic individuals must live every day with the disheartening consequences of stereotypes, prejudice, ignorance, cruelty and exploitation, and I find it hard to believe that any research advancements can possibly be worth such an oppressive price. Surely there must be a way to raise money for valid and valuable autism research without trampling upon—as Autism Speaks does—the dignity of autistic individuals.
You will note that I have written a similar open letter to Dr. Geraldine Dawson, Chief Science Officer of Autism Speaks, asking her also to denounce the “I Am Autism” video. Join me in this effort. Write to Dr. Dawson and to your fellow scientists and encourage them to take a principled stand. If enough scientists such as you and Dr. Dawson speak out against Autism Speaks' harmful practices, those practices will come to an end, and then everyone can pursue an alternative that would indeed be valuable to all, the legitimate funding of quality autism research driven not by the exploitative and offensive portrayal of autistic individuals, but instead driven by their inherent dignity and worth.
Respectfully and with thanks,
I have replied to Dr. Mottron's response with an open letter to him of my own on my blog, autism's gadfly. I invite interested people to read it.
So, according to Jonathan, alternative number three is the equivalent of "if you can't beat them, join them," in its most simplistic sense. He seems not to have noticed that Dr Mottron also said "change it."
Organizations can change, and it's to be hoped that the outraged response to the video is just part of the pressure that will change Autism Speaks. But in the meantime, the research goes on. If it's useful research, then what is lost when funding is refused? I suspect it wouldn't be that easy to find new funding, especially for research that doesn't fit into the "cure and eliminate" mainstream.
The point is that the ethical issues can be resolved without the potential loss to the autistic community of knowledge that could affect people's lives far into the future.
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