Most of the folks who read my blog do so because they googled the phrase “Why is Autism Speaks bad” or some variant. They know me to be an outspoken person and not afraid to explain why Autism Speaks will never be among the organizations I support. This is, of course, not in any way on a whim or by some ridiculous grudge. There are a host of reasons why Autism Speaks doesn’t speak for me or for other autistic people.
But I must admit that my original post on them isn’t 100% accurate anymore. There have been two notable changes to their organization within the past year and a half – 1. They have removed the word “cure” from their mission statement and 2. They have added two autistic board members to their organization.
So, of course I’m sure this makes people question the veracity of the claims that I and others have made in the past. Surely if they’ve added autistic adults to their board and they’ve eliminated “cure” under their mission statement, they must be doing better, right?
Well, I suppose in theory that could be true. But so far, I’ve seen very little to prove that is correct.
The MSSNG project is still their initiative, a collaborative genome sequencing project between Autism Speaks and Google. As of March 6, 2017, they are still funding research into finding a genetic cause for autism. There is a huge problem with not only the research being done (seizures are still not autism, no matter how hard you try to make them so), but the ethics of making 10,000 autistic people’s genomes available to researchers without much thought to the consent of the autistic people in question.
Autism Speaks plagiarized the writing of an autistic advocate, and has yet to apologize or make it right.
When Autism Speaks celebrated their tenth anniversary, they took to Twitter with the #AutismSpeaks10 tag. Autistic advocates soon told the world what we thought using the same tag. Autism Speaks changed the tag to #AutismChampions because clearly, autistic people having opinions about what kind of organization they run is clearly too much for them. (It’s okay, we took over the second tag too).
Autism Speaks took down their ratings option on Facebook when too many autistic people rated them poorly.
Autism Speaks has utterly failed to ever seriously address the murders of autistic people by their caretakers. Their response to the attempted murder of Issy Stapleton by her mother, Kelli Stapleton, was to give a list of resources for people “in crisis”. One can only infer that they meant “parents who want to murder their autistic children”.
Autism Speaks lobbied (successfully) for then-President Obama to allocate federal funding for autism to the tune of $1.3 billion over five years (beginning in 2014) via the Autism CARES Act (previously known as the Combating Autism Act). Most of that funding would be/has been used for funding grants to monitor autism prevalence rates, train medical professionals to detect autism and develop treatments in conditions related to autism (this is probably seizures-related again). Link.
The modification of Autism Speaks’ mission statement replaced the word “cure” with the word “solutions”. It now reads
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
Autism Speaks’ budget still only allocates 3-4% for “services”. The bulk of their budget goes to marketing, salaries, and research.
In fact, if you use their Grants search tool, and select “Family services” and select “Adults”, you will see that they funded no grants that fall under these parameters.
Autism Speaks lobbies for legislation for insurance companies to cover Applied Behavior Analysis, or ABA, a form of behavioral training created by Ivar Lovaas, who was also part of the “Feminine Boys Study,” which was the precursor to what we know of as “Gay conversion therapy”. These two therapies have many similarities, not the least being their founder being the same person.
One person’s account of ABA from the point of view of a former ABA therapist is here.
I’m sure there’s more than a few of you who are wondering now what Autism Speaks would need to do in order for it to be enough for autistic people. Well, I can only speak for myself, of course, but there’s a few things I can think of.
- Stop funding research into a cure and/or “treatments”
- Stop funding research into the “causes” of autism. We exist. No need to try to prevent that.
- Cut all ties with the Judge Rotenberg Center.
- Fund resources for autistic people, especially adults who lose support when we graduate high school/age out of many programs.
- Fund and back initiatives that help us with employment, as a huge portion of autistic adults are unemployed and underemployed.
- Acknowledge that therapies meant to make us look “indistinguishable from peers” have consequences. ABA seeks to make us compliant, and that often leads to not believing it’s okay to say no, which can contribute to the astronomical percentage of sexual abuse among disabled people (particularly women).
- Apologize and make amends for horrific ad campaigns like “I Am Autism” and “Autism Everyday”. No, deleting them from the Autism Speaks YouTube channel is not sufficient.
- Place autistic people at the core of your organization, not just as token members of your board. Autistic people have different abilities and needs and gifts. Any job that a non-autistic person is doing within Autism Speaks can be done by an autistic person somewhere. There are many autistic-run organizations that show it can be done.
- Listen to autistic people.
- LISTEN TO AUTISTIC PEOPLE.
- No, seriously, one more time – your motto is “It’s time to listen”? Do it. Prove you’re not all talk. Listen to what autistic people are saying.
- Accept us for who we are. Don’t try to change our natural state of being. We are autistic. We are not broken neurotypical people. Find out what our challenges are, and help us rise to meet said challenges with the tools we already have.
- Work on changing society. You as the largest Autism organization in the United States, and certainly the most recognizable one, have such an amazing opportunity to use the voice you have, in society, in legislation, in advocacy, in science, in education to amplify our voices. Work on making it acceptable to be autistic. Stop painting us as burdens on our families.
- Acknowledge that abusing and murdering your autistic loved one is not acceptable in any case. Join with the disabled activists around the world and mourn us on the Disability Day of Mourning.
It’s a big list, but all in all, I don’t think it’s too much to ask. If autistic and other disabled people can do it, you well-paid executives at Autism Speaks should be able to manage it all just fine.