Money Speaks
No, this post isn't about the salaries of Autism Speaks' executives, although that interesting detail does seem to get mentioned a lot. Rather, it's about the online discussion of why autistic people don't like Autism Speaks, which—after more than three years—finally drew a response from Alison Singer on just what she was thinking when she made that infamous statement about driving off the George Washington Bridge with her autistic daughter Jodie in the car:
From the Autism Science Foundation blog:
The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did…
…After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options.
Assuming for the sake of argument that her explanation was sincere and that she genuinely was distraught about the lack of adequate schools, I'd say that she chose a very unproductive way of addressing that concern. Whatever one may think about the likelihood of a prenatal test or other eugenic nastiness resulting from the genetic research funded by Autism Speaks and ASF, it's indisputable that these genetic studies do nothing whatsoever to combat the social barriers faced by today's autistic citizens and our families. They will not improve educational opportunities for Jodie—or any other child like her—one iota. They are counterproductive because they soak up funds that might otherwise be put toward improving education and services.
Earlier this year, ASAN issued a statement calling on organizations that fund autism research, such as Autism Speaks and ASF, to show their commitment to improving the lives of autistic people by shifting their research funds away from genetic studies and toward projects that yield practical benefits. In short, these organizations are being asked to put their money where their mouth is, rather than just vaguely claiming that they are somehow advancing our futures. When it comes to judging their intentions, money speaks a lot louder than words.
From the Autism Science Foundation blog:
The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did…
…After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options.
Assuming for the sake of argument that her explanation was sincere and that she genuinely was distraught about the lack of adequate schools, I'd say that she chose a very unproductive way of addressing that concern. Whatever one may think about the likelihood of a prenatal test or other eugenic nastiness resulting from the genetic research funded by Autism Speaks and ASF, it's indisputable that these genetic studies do nothing whatsoever to combat the social barriers faced by today's autistic citizens and our families. They will not improve educational opportunities for Jodie—or any other child like her—one iota. They are counterproductive because they soak up funds that might otherwise be put toward improving education and services.
Earlier this year, ASAN issued a statement calling on organizations that fund autism research, such as Autism Speaks and ASF, to show their commitment to improving the lives of autistic people by shifting their research funds away from genetic studies and toward projects that yield practical benefits. In short, these organizations are being asked to put their money where their mouth is, rather than just vaguely claiming that they are somehow advancing our futures. When it comes to judging their intentions, money speaks a lot louder than words.
Labels: Alison Singer, ASAN, Autism Science Foundation, Autism Speaks, funding priorities
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