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

Tuesday, March 5, 2013

Erased, Silenced, Derailed

Trigger Warning: Erasure, silencing, objectification, dehumanization

Yes, I know, these are words of social justice, academic-y words that people use to describe what is done to members of marginalized groups.
They are also good descriptors of what is wrong with Autism Speaks, though not the only ones. Objectified belongs too. Dehumanized belongs too. Tokenizing, I think, belongs as well.
Autism Speaks takes a story that, while it does mention Google's intended changes, is really about the Autistic bloggers who made it happen, and makes it about Google just doing a thing. We are erased from our own activism.
We complain, of course.
They send John Elder Robinson to calm us down. (No, I don't think he just found my blog by coincidence. He was sent.) He feigns ignorance and misrepresents the issue, all at once. Derailing, an attempt (failed) at silencing. It is not, you see, about Google and autism, but about Autism Speaks and erasure. Tokenization as well, as he is their token autistic on a Science Advisory Board so they can say they have an autistic person (well, an Aspie) on their board without putting one on their real board. Only one autistic person, at that.
Or they make their video about AAC. Like Amy says, "Not Good Enough, Autism Speaks." 
For all "I Want To Say" implies saying, we don't hear from them. We hear from the parents, we hear from the experts." We don't hear from the new AAC users. We are objects in our own stories, not participants, and we do not speak.
We are seen as less than, perhaps as not truly human.
Autism Speaks has not responded to that one, as of yet, I do not think.
Perhaps they will try to ignore it. (I don't think we'll let that be a good idea.) If not, they will use their usual tactics.
Silence. Erase. Derail. Dehumanize. Tokenize. Objectify.
If anyone gets an apology from them, it is highly unlikely to be a true apology. I'm sorry that you were offended is not the same as I'm sorry that I did a bad thing, after all. And it certainly won't be done at the same level of publicity as the "mistake" happened (Both fixing the problem and apologizing at at least the level of publicity as the "mistake" are required, by the way. So John, you can apologize for your feigned-ignorance detail here on my blog and have it work, but an apology on behalf of Autism Speaks is going to need to be on their Facebook page and main site to count.) Not that I think any of this is truly a mistake. It all lines up far too well with their rhetoric, after all. Burdens, epidemics, tragic not-quite-humans who can't do anything for ourselves.
We can, of course.
Remember- we did just get Google to do what we wanted, and Google is a lot bigger than Autism Speaks. They've got infinitely less invested in silencing us, but they are much bigger. We can refuse the erasure and the silencing and the derailing and the dehumanizing and the objectification, and we can refuse to be their newest token.


  1. I'm still trying to figure out what I wanna say to my local newspaper on this subject. And hoping that they take interest and publish it. This issue needs taken to the next level. It's time we change the conversation. This is the perfect opportunity to call out Autism Speaks on all their crap.

    1. You're more than welcome to brainstorm with me over PM if you want.

  2. Thanks Alyssa! Also, Mad love for Tina! Hi Tina! We have to get this to stop. Am not a great strategist but when something is invented just you know project the bat sign or something and I'll come in my fast car. This is Ib, by the way. It keeps not letting me sign in. Love, Ib

  3. I am just learning about the problem with autism speaks and see the points made about it on this blog. What I don't understand is their motive. Why would they want to speak FOR autistics instead of just letting autistics speak? And the objectification, dehumanization, etc. Is it simply to raise money (for themselves) or are they trying to control the way people see autism for some sinister reason? Is it possible they mean well but are on the wrong track?

    1. Im not sure about motive either. If they were trying to BE good, I think they would listen to autistic people, so maybe they are trying to FEEL or LOOK good instead?
      Money is definitely a factor.

  4. I'm sorry that you were offended is not the same as I'm sorry that I did a bad thing, after all.
    True. If Autism $peaks was truly sorrry about the offence they cause to Autistic people, then they would apologise for that, not our reactions to it.


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.