Friday, March 8, 2013

Autism Speaks, I Want to Say: A Flash Blog

Autism Speaks recently released a video called "I Want To Say" about Augmentive and Assisted Communication (AAC) devices and apps, related to its Hack Autism* initiative this month.

Sounds like a great idea, right? Except they don't let any of the autistics shown in the video communicate in their own words! It's allll about the parents and how tragic autism is for the parents. Originally, only parents would evaluate the apps at Hacking Autism; apparently the autistic holding the Windows tablet is not the end user, the parent is. The cosponsors at the Bing Fund gave in after some social media pressure, but it says a lot that it wasn't planned that way. Nothing about us, without us.

Here's a pingback to the blog that discusses it in detail, from the perspective of an Autistic Deaf person who compared how much assistance Deaf people get in actually communicating as opposed to playing normal.

So here's what I want to say: Autism Speaks, stop silencing actual autistics.

I want to say: Nothing about us, without us.

I want to say: Autism Speaks, stop making autism all about the parents.

I want to say: Autism Speaks, stop portraying autism as a curse from a fairy tale or horror movie.

I want to say: Autism Speaks, stop sucking up the vast majority of charitable donations under the pretense of helping autistics when only token amounts actually do.

I want to say: Autism Speaks, put a majority of autistics on your board, some of whom use AAC or sign language or other non-spoken communication, and let them set the priorities. Nothing about us, without us!

I don't use an AAC device, as I didn't have a speech delay. I might find one useful for when I'm having difficulty with speech or know I'm not going to put the right spin on things, but I can get along OK. However, other autistics communicate primarily via keyboard, such as Amy Sequenzia. Here's what she said about "I Want To Say."

*Regarding the event title, "hack" is a very positive term in the programming community. It does not mean "hacking" as in the popular media definition of breaking into computers/networks, or the dictionary definition of chopping things wildly and destructively. To someone who writes computer programs, "hacking" means finding a creative solution to a technical challenge, often with overtones of doing it for fun. "Hack Autism" was a day where programmers got together to write apps for autistic people. Or at least for parents who wished their kids could seem less autistic. That error in judgment was the basis of anything negative, not the name, or competing with the head start Apple has with the iPad and various apps for autistic kids.

Saturday, March 2, 2013

Autistic People Are Not Letting Autism Speaks Erase Us From Our Success

Trigger Warning: Discussion of Autism Speaks and ableist rhetoric.

I had a lot of things in mind I was going to write for the "Autistic People Are..." Flash Blog Event, but those ideas were pre-empted by current events.

I found out via Facebook on Friday, March 1st, that Autism Speaks has erased the success of Autistic bloggers in getting Google's attention and a promise to change their autocompletion feature when the top search strings are the hateful things we blogged about last Saturday. The Autism Speaks news blurb and Facebook page mentioned Google's altruism but not why they suddenly noticed the issue, despite linking to a story that properly credits the Autistic bloggers' hard work. (That reporter interviewed the flash blog leader, the owner of Yes, That Too.) Correction: The reporter interviewed a different team member, whose blog is Unstrange Minds.

So, let me get this straight. Nearly a hundred Autistic bloggers banded together to protest something and succeeded in getting the attention of one of the largest, best-known Internet companies to fix some unintended consequences of their flagship product. You would think that would be big news for the world's largest Autism charity, wouldn't you?

That would be true if Autism Speaks were truly interested in the well-being of Autistic people. Instead, they chose to report this as though Google just magically realized one day there was a problem, with no mention of the activists or the flash blog. Autism Speaks erased the Autistic advocates who dared to speak for themselves.

And to add insult to injury, they pulled this stunt the day before ASAN's National Day of Mourning for Autistics killed by their caregivers. This event grew out of last year's vigils for George Hodgins, an Autistic youth I never met who lived within 5 miles of me and was killed at age 22 by his mother. News reports not only treated the murderer sympathetically, they erased him from the story of his own murder by leaving out the types of human interest details you almost always see about a crime victim.

These reports uncritically repeated stereotypes and "autism mom" tropes that turned out to be false. Mother was tired of spending 24/7 with her adult Autistic son because she had nowhere to turn for support and no program would take him? No, he was an alumnus of the Morgan Autism Center and they said he was always welcome there. And it goes on from there. (Besides the point that if it were true, murder is still murder even if Mom is tired and frustrated.)

Many in the Autistic community consider Autism Speaks an accessory before the fact in these cases, because this group for parents of Autistics spent so much time, money, and effort to convince America that having an Autistic child is a disaster that will ruin your life. Parent kills non-autistic child, world hates them. Parent kills autistic child, world is sympathetic because services/burden/etc. According to Autism Speaks, Autistics are a puzzle (probably missing a few pieces, nudge nudge wink wink), an epidemic, a tsunami--a disaster waiting to happen to YOUR family, if you don't donate now. Not really people because we have strange behaviors and don't communicate the same way.

Just having a reporter contact an actual Autistic adult for a news story is a major step forward in Autistic Acceptance. Google paying attention to Autistics' complaints? That's a huge advance. But to Autism Speaks, our role in our own stories isn't worth mentioning.

I don't know if Autism Speaks just doesn't realize what they did, or if they're conscious of the cognitive dissonance between their "autism is a devastating disease" rhetoric that makes Autistics helpless burdens who have no voice of their own and the success of a social media campaign designed and completed by Autistics. How can they keep extracting money from frightened parents who don't want their kids to grow up to be enigmatic, subhuman burdens on society if parents realize that Autistics can take initiative and carry out a campaign like we did?

So the Autistic community is not letting Autism Speaks erase us from our success.

Please, don't just comment here. Comment on the Autism Speaks Facebook page and website and feel free to link here. They need to know we won't just sit back and let them silence us.

(And please visit other "Autistic People Are..." blogs, too!)


February 16, 2013: The author of Yes, That Too, an Autistic advocate and college student, announced the two Flash Blogs in response to outrage in our community that the autocomplete suggestions in Google and Facebook Search for "autistic people should..." and "autistic people are..." were horrible, triggering, hateful things. So many people using these search functions hate autistics that these are the most common searches.

February 23, 2013: Nearly 100 Autistic advocates posted blog entries on the "Autistic People Should..." theme and submitted them to the blogroll.

February 27, 2013: Kathleen O'Brian, reporter for the Star-Ledger, posted this article announcing that Google had responded to the Flash Blog event by announcing it would figure out how to block search suggestions that constitute hate speech. She interviewed the Yes, That Too blogger for the background of the Flash Blog.

February 28, 2013: Autism Speaks announces on its Facebook page that Google has decided to change its auto-suggestion algorithm to filter out "autistics should die" types of auto-complete. No mention whatsoever of the flash blog.

Screencap of Facebook discussion: