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

Saturday, March 30, 2013

They... Responded?!

Yes, you heard me. Autism Speaks actually made a semi-response to the "Autism Speaks, I Want To Say" flash blog. Maybe they remembered the fuss we made after they erased Autistic activists from the whole "Autistic People Should" flash blog leading to Google changing the autocomplete search terms and then some of us going after Autism Speaks' erasure in the following "Autistic People Are." Maybe. Maybe they noticed that the same person organized all three events. I'd love to think I'm a sufficient threat to them that they keep an eye on me.
But note that I say semi-response. It's very clearly a PR response, you can read it here. Reading it, I could swear I was back in high school listening to my principal talking about how valued student perspectives are but not saying a word about what the perspectives were, not telling us where to find the perspectives, not addressing anything students actually said. It reeks of "isn't that cute!" as opposed to being the response of someone who sees us as equals.
I mean, it's progress. Ignore, then laugh, then fight, then win, right? Well, they're not exactly laughing at us, but they are speaking from the position of thinking that they don't really have to listen, they just have to say nice words about listening. They're wrong, but one of the mistakes you get hit hardest for is underestimating your opponents and I plan to hit them fast and hard until they learn that despite the financial imbalance, Autistic people are speaking and it is time (long past time, really) for them to listen instead of ignoring and fake-listening. Not good enough, Autism Speaks. Talk to us like equals. Respond to our actual statements. I know how power balances work, and I know we have more power than you want us to have. I know we have more than you think we have, too, and that we are better at using what we have efficiently. You might have a financial edge of orders of magnitude, but we have people who know what we are arguing for- our lives, our rights, our safety. Something worth fighting for. And we are stronger for it. Autism doesn't speak unless autistic people are speaking, and we are, and it is time for you to listen properly.
Don't just tell us that our perspectives are important, show us. Do it by responding to what we have to say, not just to the fact that we are saying things and that this is (not really) important to you. I went to a public high school, I know how administrators who want students to think they care talk. And I'm on a neurodiversity committee at college. I know how administrators who actually care talk. You fall squarely into the responding for PR but not actually caring what we say category, and don't ever believe that you have me fooled.


  1. Well, what else would we expect from narrow-minded bigots like Autism Speaks? Clearly, they don't look like they'll change their anti-autistic agenda for a long while. In the meantime, let the fight for genuine advocacy continue.

    1. Being completely ignored is what I expected, since it's their usual tactic. This is only better because it means we're too much of a threat to ignore now.

  2. And autistic voices and their allies will only get louder. Thank you, Alyssa, for your tireless advocacy.


I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.