7 Reasons Why an Autism Advocacy Organization Would Oppose the Combating Autism Act

BREAKING NEWS: The Autistic Self-Advocacy Network (ASAN) just issued an official statement in opposition to the renewal of the Combating Autism Act.

If any of you are wondering, “Why would an autistic advocacy organization oppose a bill that allocates funds toward autism research?” here’s a quick breakdown of the most frequently-cited reasons (in no particular order).

#1: The name “Combating Autism” is in and of itself offensive. Think about how people would react if an appropriations bill for PTSD research was called “Combating PTSD”. It would never fly, and it’s not okay to equate “autism” to an “enemy combatant that needs to be killed/neutralized”. Ever.

#2: Many autistic people see their autism as an integral part of their identity. It’s kind of similar to the way most of us identify as being an extrovert or an introvert, but more fraught. This does NOT mean that all people who use the #StopCombatingMe hashtag are completely against medication, but they are against framing autism as something that is inherently destructive and needs to be “cured”, “combated”, and/or “eliminated”.

#3: The media, politicians, lobbyists, and many parental advocates have a bizarre fixation on trying to “save” autistic children and prevent future cases of autism, while ignoring the insanely high rates of unemployment and homelessness among autistic adults. It is as if autistic adults are invisible, but everyone wants to stop white, upper/middle-class children from “falling prey to autism” at all costs.

#4: Very few organizations that fund autism research have autistic people on their advisory board(s). The current bill does nothing to address that disparity. Given that the current estimated rate for ASD in America is 1/68, that lack of representation is completely unacceptable. #NothingAboutUsWithoutUs

#5: Many people go around assuming that autistic people are “incapable of speaking for themselves“, “do not understand other people’s concerns”, and “cannot decide what is good for them.” Even though autistic people have language and sensory processing impairments, most of them do care about other people (they just don’t express it in the way non-autistic people do), and many of them are very capable of speaking for themselves. They deserve to be listened to.

#6: One of the worst perpetrators of ignoring autistic people’s voices and focusing on prevention for unborn children rather than helping autistic adults find ways to contribute to society is Autism Speaks.

(I ask that you avoid giving them web traffic as much as possible. Most of the same information they have is available on Thinking Person’s Guide to Autism, ASAN, and directly on scientific research institution’s websites.

If you don’t believe me about Autism Speaks’ position of bias and discrimination toward autistic people, read this transcript from one of their PSAs:

It includes lines like “I am autism…I’m visible in your children, but if I can help it, I am invisible to you until it’s too late…I know where you live.”

And “If you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain…I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.”

To which, the parent of the autistic child is supposed to say, “You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness….You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?”

Many autistic people consider the language in this ad to be hate speech. Full stop.

I’m not autistic (I’m ADHD, and I have a brother on the autism spectrum), but, frankly, I think that if supporters of Autism Speaks could hear their children, they would hear them saying things like:

Autism Speaks is the top Google hit when you search for information about autism, and they control more of the research money and more of the lobbyists than any other autism interest group. There are some genuinely good-hearted people who work for/with Autism Speaks, but the overall mission and philosophy of their organization is ableist.

They’ve only had one autistic board member in the history of their organization, who was hoping to help them shift away from ableist rhetoric, but he was so frustrated by the Autism Speaks leadership that he resigned. Here’s what he said about his resignation.

He’s still active in the autism community, though. Here’s a blog post he wrote about some of the studies on autistic adults at the IMFAR 2014 conference.

#7: Autism Speaks and their allies are the ones who have the most sway over the politicos who wrote this bill, and if the Combating Autism Act is re-authorized as is, Congress will be perpetuating the idea that parents’ opinions are more important than the opinions of autistics themselves.

(Most of those who vote in favor of this bill won’t be thinking about it that way, but it’s because autism civil rights issues get very little media and political attention. It allows Autism Speaks to steamroll over groups like ASAN. That’s why you should call your Congressman.)

I don’t think ASAN is perfect. But they deserve to be heard. That I know. And the fact that most people have no idea that groups like Autism Speaks are marginalizing autistic people’s voices means:

WE NEED TO BE TALKING ABOUT THESE ISSUES.

We need to talk about this NOW.

It’s time for #Neurodiversity to go viral.

If any of the things I’ve said struck a chord with you at all, please share my spiel. And as always, feel free to disagree with me and/or ask questions in the comments.