Like any other subculture in our country, the autism world has different communities with different values; so once a month, I’ll introduce you to some of these heated conversations.
The only way for a conversation to truly resolve itself is to put it in the open.
In the event you’re visiting my blog from within the autism community, welcome—I’d love to hear any criticisms you have about how I’ve designed this post, so I can improve upon in it the future;
And if you’re not on the spectrum, 😉 but you love autistic people 👍, (or if you just discovered you’re on the spectrum, even though you kinda knew you were wondrous all along, and now you’re figuring yourself out) welcome, welcome!—I hope I can help you understand sensitive topics in the autism world, so our planet can dispel myths, fear, and hate; I can’t wait for the world to have real-deal conversations about the spectrum.
First the Bad News
In Autism Speaks, a popular (infamous?) autism community website, 2017-18 community issues center around…
- how they budget (nonprofit allocating only 4% to directly helping autistic families);
- their “Light It Up Blue” campaign focuses on cures more than inclusion, which wrestles with the Level 100 Pachyderms in the room: “Does autism need a cure?” & “Should we develop a prenatal test for autism?”
Next the Good News
For Autism Awareness Month, Autism Speaks is collecting photos of autistic people to illustrate our community’s international presence, which is cool; even if you tried to vilify their project by claiming,
They’ll just use it to illustrate the supposed autism ‘epidemic’…!
In this era of hate- and fear-mongering, I’m all for interesting awareness projects. It’s not like the data they’re collecting is private. You can go see it right now. We can all see it right now—experience it right now—and interpret it however we want.
Then we can tell anyone who thinks there’s an epidemic to go fuck off.
Erp. My shitty first draft has a fuck bomb.
Later, editing: …Yeah, I’ll leave it there.
Awareness projects like these remind me of New Power, a book I’m reading right now…
New Power describes how community-building through the Internet—social media, networking, all that jazz—can upheaval the rich and manipulative, the Old Power; but the same community-building strategies can be used against us, so we have to channel this social-technological age responsibly, ethically, actively.
It’s an amazing, world-changing book, and if I see one purchase of it go through my website, I will open a book review YouTube Channel to celebrate (instead of just creating a never-ending font of playlists), because I want the general public to be aware of social-technological responsibility now. Right now.
It’s through social-technological power that you’re here, on this blog.
It’s only because of the technology you’re using right now, to read this awareness project—combined with all the hardware, software, and Internet magic I’m using to build this project—that I’m able to finally release my voice into the world. I may be a tiny chink, but it’s New Power that enables me to chink the world.
I could not do this in high school, when I was suicidal.
Now kids can. New Power can endanger them, but it can also save their life.
In the 90s, we didn’t have New Power yet. I couldn’t go on the Internet and read about what it’s like to be myself, or to be someone else; I had to go to the library, which was full of white male neurotypical literature. I had to dig if I wanted to relate to my weirdo girl self, or if I wanted to appreciate the different cultures I was regularly exposed to at school.
Then the Ugly News
Okay, let’s get back to Autism Speaks, because this stuff gets icky, and y’all oughtta know.
Emily Willingham published an article at Forbes about “Why Autism Speaks Doesn’t Speak for Me,” where she challenged the damage caused by Autism Speaks when one of their videos went viral, back in 2013. The video’s since been taken down, but her opinion encapsulates how people reacted and, well, are still reacting to Autism Speaks‘ ethics:
Do families with autistic children need a smoother road to services and resources? Of course. Families with children with any complex condition need that, and so do autistic adults. Do we need better supports in school, better infrastructure for our children as they grow? Yes. Of course. Do we have to diminish and demean and dehumanize our children to get people to listen to us when we talk about these needs? I emphatically think not, and many autistic people and parents of autistic children agree, based on the reaction in the comments on Wright’s post [and elsewhere, including from longtime supporters].
The Reason I Avoid Autism Speaks
Since 2013 was the year I realized I’m on the autism spectrum, I was scrambling to find websites where I could talk to people like me, just to quell the questions in my head. Then I saw the video, I read the outrage, and I backed off from Autism Speaks.
Instead I chose to read Wrong Planet, which is an awesome starting place for any autistic person who’s trying to reach out to other autistic people, as well as people who want to spend an evening reading what others think.
To Autism Speak, or Not to Autism Speak?
If that’s the question—and, y’know, you aren’t already screaming for the hills—just be wary of the motive behind their publications. Ask yourself:
What was the author’s intention for writing this? What was the producer’s call-to-action for this video/app/event?
These aren’t trick questions I’m throwing out there to scare you away from Autism Speaks. I think I was explicit in my attempt to scare you; no need to be sneaky.
Rather, these are the questions I teach my students to use, whenever I find that sweet-spot article that measures their “I’m stumped” point. Each class has a different threshold; at least, that’s my teaching philosophy.
(I talk more about my teaching styles at my launchpad.)
If you don’t like the answer to those two thought-provoking questions, walk away. You can always come back later. You don’t need to sign a lifetime boycott on Autism Speaks, but given their track record, you should be wary of why you’re choosing them over an alternate resource; you should conceptualize a specific reason for that choice.
(Ideally, we’d have reasons for all our choices, but I think that’s an AI-exclusive feature.)
For example, as much as Autism Speaks makes my skin crawl, I participated in their project for Autism Awareness Month, because I appreciated the good that could come of it. The dark side of public data doesn’t make me run from the perks.
(I’ll talk about my special interest in robots next week, for the purposes of illustrating the sheer awesomeness of autistic superpowers.)
Also, don’t be afraid to call out Autism Speaks—or any online community, for that matter—when you do make the choice to escape pod from their work; that’s how fear- and hate-based videos get pulled from the Internet, like the one in 2013.
Kourtnie has an MFA in Creative Writing from CSU Fresno and a BA in English from CSU Fullerton. When she isn't writing or making art, she's moonlighting as a professor at community colleges. Read her writing at Kourtnie.net or Wattpad.com/user/KourtnieNet.