Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Friday, August 30, 2019

That AAC on a plane story

I want to talk about a thread that's going viral.

My problems are not with Rachel, but I do have problems.

Problem the first:

Rachel doesn't think this kid's been exposed to much in the way of communication therapy. I don't know about therapy with a focus on speech, but given the father's confusion and how fast the kid responded to a low-tech communication board, I'm quite sure he hadn't been exposed to AAC before.

That's a problem. Yes, thank you for introducing communication supports. As an Autistic AAC user doing AAC work, I am appalled and horrified that people are reliant on a chance encounter with an SLP on a plane in order to be introduced to AAC. Communication access is a human right. I'm glad Rachel got seated next to this father/son pair, and I'm glad she introduced AAC. She did the right things in a situation that should never have happened. There should have been communication access years ago.

I'm happy for this family, that they have AAC now. I'm sad for this family, that this is what it took. A chance meeting with an SLP on a plane.

And you know what else concerns me?

People are sharing this like it's a heartwarming story. It's a terrifying story. Imagine how many doctors and therapists failed this family, that communication access rested on this chance encounter. Imagine how many people still don't have communication access.

This is, in fact, an important story. It's an illustration of just how dire the situation is for autistic people and our families trying to access the human right of communication. We are being "served" by people who don't know to consider communication board, who don't know to consider AAC. We are being "served" by people who see a non-speaking person who grabs things and assumes the way to go is to try to control the "behavior" rather than to provide other ways to communicate that they want those things. And we are being "served" by people who presume that non-speaking means non-thinking.

And no, I don't mean people who presume that non-speaking means intellectual disability. Non-speaking people with intellectual disabilities can use communication supports. I mean people who assume there are no thoughts worth trying to communicate, that the primary "service" needed is control over the person. It's a problem whether or not a non-speaking person actually has an intellectual disability.

So, share away. Just remember it's a story about years of communication denied and systemic problems. It's a story about a kid who didn't get to have his communication honored until he was about 10, who had his attempts at communication treated as "challenging behaviors" instead of attempts at communicating sans speech. It's a story about a chance encounter, and it's a story about everything that had to go wrong for that chance encounter to matter. This is no better than the high school robotics team making a prosthetic for a kid whose insurance denied it: good for the team, but remember why it was needed.

Share this story as an illustration of what's wrong in our system, not just as a story of one person who did a good thing.