Note: This is my personal view. It does not represent the views of any organizations with which I am affiliated.
Autism Speaks, the largest charity organization associated with autism in the U.S., announced this week that they would no longer be seeking a cure for autism. For those outside of the autism community, many autistic self-advocates have long been decrying Speaks’ push to find a cure, saying that the money should be spent on actual services for actual people, and that the “cure” language says their lives are not worth living. Especially within the neurodiversity paradigm, autistics understand that their brains cannot simply be rid of autism and still exist as their brains. Autism in inextricably linked with many people’s identities. So speaking of a cure felt like an attack on their selfhood. It said that because autistic brains are different, they are bad and should be eradicated, despite the fact that many autistics were loudly saying they did not want to be changed, they wanted support, understanding, accessibility, and opportunities.
Speaks has made many, many, MANY other missteps. Their unending focus on parents rather than people who are actually autistic, this horrific ad, the lack of actually autistic people on their board or in high up positions in the organization, the language they used around autism (epidemic, burden, etc.). It all adds up to a big ol’ pile of shit, and I have yet to meet someone who is autistic who hasn’t just said “fuck Autism Speaks, I’m out.”
So this rolling back of the “cure” language is too little too late for most people I know. I understand. It is a pretty pathetic attempt to win back the people you supposedly serve. I know a lot of people who are saying it doesn’t actually much, and that there is still absolutely no way that they will support Autism Speaks (especially without any apologies for previous mistakes). I am completely sympathetic to this viewpoint, and I also am not particularly interested in supporting Speaks.
But what makes me hopeful about this is not actually Speaks. What makes me helpful is that there have been YEARS of self advocates pushing for this change, without much response. It took years before people outside the deep neurodiversity community began to notice and understand the problems with Autism Speaks. So it gives me hope that finally, FINALLY people are listening. FINALLY the voices of autistic people were loud enough that the largest autism organization in the country felt the need to change. It may be a nominal change, with little in the way of actual money being moved to helping people, but we were loud enough that they couldn’t ignore us any more. They felt that there was enough pressure that they HAD to do something.
What this says to me is that we are growing more organized and more powerful. People are starting to take note. We have found some of the correct channels to reach the people who are most misguided. I am hearing more and more rhetoric that recognizes the value of disabled and autistic people.
It’s a baby step. It does not fix the past harms. We still have such a long way to go before people have the services, respect, and fulfilled lives that they deserve. But I see it as confirmation that we, the self-advocates, are doing what we should. I see it as a big old gold star that says “keep on keeping on. Change is possible.”
I want all of us to stop and recognize that for ourselves. We did this. It is small, but Speaks is fucking huge, and we made them budge. Oftentimes that first movement is the hardest. We can do this.