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.