Mixed feelings about Autism Speaks

There have been a number of long-simmering controversies surrounding the group Autism Speaks and its allegedly demeaning essentialization of autistic people, but founder Suzanne Wright’s recent “call to action” (http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action) seems to have been a tipping point for many in the autism community. I’ve never had strong feelings one way or another about Autism Speaks, but now I feel the need to stake out my position. I’ll do this is a series of points.

  1. The people complaining that only 4% of Autism Speaks funds go to family services don’t seem to understand the concept of advocacy (or research). Stop complaining that they spend millions on lobbying. If anything they should spend more on lobbying. Autism is costing public & private insurance, along with the education system, vast amounts of money. This is only going increase and it’s going to be tough to expand social supports to ASD adults. We do not want the major advocacy voice in the community spending its money providing the services that government should be providing. The research front is similar, but this brings up the “eugenic” complaint.
  2. Autism Speaks is focused almost exclusively on treatments and cures for autism. This approach invariably brings up charges of eugenics from high function adults in the population. This is conflict faced by every disability group, and Autism Speaks is probably not wrong in their focus. We shouldn’t be wishing autism on future generations just to build up the self-esteem of the existing ASD population. Treatment and prevention research is ok. However, there is a language problem.
  3. The real problem with Austism Speaks is that its efforts to raise money and awareness hinge on a rhetoric of crisis and suffering that goes too far in painting autistics as miserable burdens on family and society. If you’re advocating for a class of people where many/most will be able to read (and google) you need to be self-conscious about how these individuals will feel reading your materials. If Austism Speaks wants to focus on very low functioning individuals and their families they need to be clear about the matter (and that would be a valid choice and would be a better fit for their crisis rhetoric). Tiberius sees Autism Speaks PSAs between the cartoons he watches on the QUBO channel, and thank goodness they are some of the milder materials. Still, Tiberius has repeatedly asked if he made eye contact, etc. as a baby. Austism Speaks can’t talk like autistics aren’t in the room.
  4. The group is parent dominated and has few autistic individuals employed or on its board. First, they should be at the forefront of the issue of employment for the disabled, particularly when being autistic should improve one’s autism advocacy. Second, if they had to develop and watch all their materials with autistics in the room, their tone would no doubt be more respectful.

So to sum up, I think the structural charges (1&2) against Autism Speaks miss the mark. They should not focused on direct service provision. But the group’s persistent and stubborn refusal to fix its rhetoric and staffing problems (3&4) is not excusable. The group is sacrificing the dignity of millions of individuals it claims to represent in order to advance the interests of on subset of the autism community (and the larger social interest in preventing autism). That’s not cool and not acceptable.

 

I think the post “Living, Not Existing” on the blog Pucks and Puzzle Pieces http://pucksandpuzzlepieces.com/2013/11/13/living-not-existing/ nicely frames the issue:

“You can’t get to the numbers — the famous 1-in-88 children and 1-in-54 boys — without including the likes of my son and many, many more who are more mildly touched by autism. Without including the full width of the autism spectrum, the numbers don’t support an “epidemic” or a “crisis,” two words that often appear beside those statistics in Autism Speaks’ materials.

Autism Speaks is trying to have it both ways. They use exploding numbers to call it a crisis, but descriptions like Ms. Wright’s are nowhere near my reality, nor are they for many autism families. I feel they have made a calculated decision to use fear to spur to people to action, to giving, to caring. “

Nicely put.

 

I’m not going to campaign against autism speaks or protest their events. I don’t think that’s called for. I am going to look for advocacy groups that better represent my son and my family. I’m hopeful groups like the Autistic Self Advocacy Network can grow to be more than just opponents of the Autism Speaks (but currently the “eugenic” criticism seems to occupy most of their activities, potentially underplaying the struggles of the low functioning ASD population). I also hope that parents and family are not excluded counter-productively in the name of self advocacy, as family connections have been the major resource of dispersed groups like gays and the disabled (it’s how we got the ADA and the 2008 Amendments). I’ll certainly need to think more on this topic.

Light it up blue doesn’t really do anything for me. I’m always a bit skeptical of the power of awareness, but this is a cool image.

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