The Autism Speaks that has been taking form over the past year may prove to slowly be trying to become a different Autism Speaks from the one I’ve been protesting over the past several years.
There has been a change in leadership–the Wrights are out, and rumor has it that some #actuallyautistic adults are in–and Disability Scoop recently reported that they’ve even made some change to their mission statement:
“Autism Speaks was founded on the goal of curing autism as one of its objectives,” Shore said. “However, similar to many experiences of parents of children with autism, the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum — rather than something that has to be done to.””
Autism Speaks has a long and littered past. Never mind the steep payments for CEOs and comparatively scarce delivery of services to actual autistic people and their families, which is of course undesirable but ultimately forgivable; this organization has a history not only of being hesitant to have people on the spectrum themselves in their top ranks but of supporting entities that hurt autistic people, such as the Judge Rotenberg Center (so much evil in one place), and of hurting autistic people themselves by publically declaring autistic people to be “missing” and how we cause our families to “not really be living” and by having parents in their videos talk about wanting to murder their autistic children within earshot of said children.
Autistic Hoya/Lydia Brown made a particularly powerful and illustrative list of concerns on their Facebook page [there were no links in the original post; the links are those that I’ve added to give context] :
“Autism Speaks isn’t looking for a cure anymore but…
Will they apologize for “Autism Every Day“?
Will they apologize for letting JRC exhibit at their D.C. walk?
Will they apologize to the dozens and dozens of autistic people that their staff and volunteers have harassed and silenced?
Will they apologize to the autistic teenager who they threatened to sue for parodying their website?
Will they ever have 51% or greater autistic voting board members, who aren’t all white people?
Will they keep trying to find a prenatal test for autism?
Will they get rid of the fucking puzzle piece logo?
Will they actually have actually autistic people overhaul ALL their outreach materials, and will they pay them for doing so?
Will they stop pushing for increased funding for ABA in every single state and contributing to the increased traumatization of the next generation of autistic kids?
Too little, too late.”
I hope that it’s not too late. I genuinely want to like Autism Speaks, I really do. I want to believe that the good within that organization is salvageable.
And there is good to Autism Speaks. Not nearly as much good as their finances are capable of, but there is good. They have a surprising number of resources to help Autistic adults find employment (though it does run the danger of being more oriented towards parents and employers than towards autistic adults themselves). They get legislatures and governmental entities to pay attention to autism and to autism services (some with admittedly curist aims). They do have multiple resources to help prevent wandering and discover useful AAC and educational apps. Even in all of these, of course, there are problems, problems that need to be seriously evaluated and addressed. But there is something here to work with.
I suppose there is the question of why try so hard to fix this particular organization when there are so many who do this “autism advocacy” thing so much better, like the Autistic Self Advocacy Network and the Autism Woman’s Network. Of course I strongly encourage those to support these organizations, and I’d of course be delighted if either or both of these replaced Autism Speaks as “the” autism organization in the eyes of most people.
Make no mistake: Autism Speaks is still one of my least favorite autism organizations that I happen to be aware of. Even when deliberately trying to seek out what I like about the organization, I find more examples of things that need to be amended.
But I don’t foresee Autism Speaks going anywhere anytime soon. It’s lost approval, support, and finances over the years, but it still has its corporate and celebrity endorsements, and it still has a fair number of autistic people behind them. There are a lot of “non-profits” that are publically and widely known to be terrible in a number of ways, and those non-profits are still profiting pretty darn well.
At present, these announced changes may, in fact, be too little in and of themselves. There does need to be more than just nice words on the part of Autism Speaks.
There needs to be a lot of apologies for a lot of misbehaviors.
Perhaps more importantly, there needs to be specific plans about how the organization is going to prevent making these same mistakes in the future, how the organization is going to hold itself accountable for the way that it talks about autism and autistics and what influence this may have on autistic people themselves (and those who love us), how it determines which entities and practices receive their praise and which receive their condemnation, how it will proceed in its handling of disagreements with others, and how it plans to further provide support for autistic people of all needs and all ages.
When I see those apologies, I’ll acknowledge them. When I see those changes for the better, I’ll commend them.
And when I see more examples of ableism, of unpersoning, of financial irresponsibility, I’ll call it out.
Autism Speaks has the potential to be a very strong driving force for the betterment of autistic people.
Now, they need to prove it.