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 16, 2013

True, But Incomplete

I am a self-advocate. This is true. When I went to my teacher on the trip to India and told him that I am Autistic, and that I was running into issues with sensory overload at the factory visits, that was self-advocacy. When I asked my roommate to come with me for moral support when I went to talk to him, that was self-advocacy. When I give people the heads up that I need space, that I absolutely can not be touched without warning, that is self-advocacy.
But that is not all I am. I am also an Autistic activist. The difference between acting as a self-advocate and acting as an Autistic activist is, largely, in who I am advocating for. As a self-advocate, I advocate only for myself. If my advocacy is primarily for me but also partially for the community at large, calling it self-advocacy is probably ok, calling me a self-advocacy probably works in that context. When I am advocating purely for myself, the terms definitely work. But there are contexts where it does not. Autistic self-advocate is something I am, but it is incomplete. It doesn't tell the whole story, and acting as if it does is ignoring a significant part of my activism, the part that is not only for my own benefit, the part where I am trying to help all Autistic people, all autistic people, and all people with autism.
When I give a conference presentation on the erasure of Queer Autistics? (I will be, next month.) When I write things about autism in general, not just myself? Most of the things I take to this blog to do? Not self-advocacy. The fact that I am Autistic myself is relevant, but I am not advocating primarily for myself. I am engaging in good old fashioned activism, and it's not just for me. Usually, it's not even mostly for me. I write for me in the sense that I write because I need to get my words out, but I write for the world in the sense that I really am trying to change the whole world, starting with my little corner. That's activism. 
So I am an Autistic self-advocate, and I am an Autistic activist, and which way you complete that phrase depends on the context. If you're not sure, go with activist. Most of the things where activist wouldn't work happen quietly, between me an a professor or me and a sports coach, with no ones life to be effected except my own. Most of the things where self-advocate wouldn't work are on this blog or mentioned here. 
Language matters. Context matters. If you're reluctant to call me an Autistic activist, ask why. And don't try to tell me that you're reluctant because it's just words. If it's just words, then you will have no trouble using the words I want you to use to describe me. 


  1. Interesting. I have always understood the phrase to be less about whom the advocacy is for and more about who is doing it. That is, autistic (or Autistic) self-advocacy is not the opposite of advocacy by Autistic people for some other group, but the opposite of parent advocacy or professional advocacy on behalf of autistic people.

    By your much narrower definition, I am very rarely a self-advocate for any group or person. I am more often merely a blogger with an interest in disability.

    1. It's not just Alyssa's definition.

      Before the term "self-advocate" came to be applied to Autsitic activists who were speaking or writing on behalf of fellow Autistics (in order to distinguish them from non-Autistic activists and advocates speaking on behalf of Autistics) the term "self-advocacy" was mainly only applied to cases such as patients in hospitals negotiating with doctors and other staff for their own health care.

    2. Even within the civil rights movement, "self-advocacy" with respect to those with developmental disabilities refers to people advocating for their own living conditions, not to activism.

      For further reference, see:

  2. Glad I found your blog. And I agree with you: you are an advocate, an activist (and not just a self-advocate). And I thank you for what you do.

    I think I understand what you are saying: "Self-advocacy" implies speaking for one's self. Just as an "environmental activist" is an activist on behalf of protecting the environment, or a "human rights activist" advocates for human rights. The term "self-advocacy" is limiting and silencing because it implies that you are only speaking for, and only able to speak for, yourself. And that would allow others to limit what you have to say.

    We are capable of being advocates for whatever cause we believe. We are autistic, and we are autistic activists / or to avoid confusion with the placement of the adjective, we are advocates for the rights of autistics. My child is learning to "self-advocate" in speaking for her self, but I also want her to grow up and be an advocate/activist for whatever cause she believes in (if that is what she wants).

    Thank you, again.

  3. Agree. It's social, economic, political, judicial for autistic rights. It's activism.

  4. I hope I did my bit for activism today. It was just a small bit. I tried to explain to my mum that my pursuing a diagnosis now would mean that I wouldn't get an Asperger's diagnosis, which she thinks is pretty accurate. It means I would get an autism diagnosis. She visibly recoiled from that idea (and me having trouble reading body language recognising that reaction means a lot). So my mission today was explaining to my mum the similarities between all people on the spectrum, instead of drawing the line between "passing as normal" and "not passing as normal". I hope I succeeded, but at the very least the seed has been planted. Fingers crossed. Not just for me, for all autistic people everywhere.

  5. Might I quote extensively from this for a talk I am giving my department of developmental pediatricians and psychologists about "disability and advocacy"? I am wanting to get at the differences between awareness, self-advocacy disability/autism advocacy, activism and allyship and you did it better. I would credit in any way you like (blogname, realname, anything else)

    1. Go for it. (Applies to my other posts too, in case you find other stuff relevant for this or other talks.)

      If it's the sort of talk where citations are a thing (a good guide being if you're doing citations for the other stuff you're quoting) then the author name is Alyssa Hillary and the blog name is Yes, That Too.

      If not, then I'm Alyssa Hillary, an Autistic blogger and scholar. Enough info that people can find my blog would be good, however it is that you do that.

      I'd be interested in a transcript from the talk, but my getting that is not a condition of you quoting me. It's just a thing I'd be interested in because knowing how my stuff gets used is cool.

  6. Thank you!

    These are generally informal talks to around a dozen people. I usually attribute quotes as I go and then provide references at the end for all my sources.

    There may not be a transcript but there will be powerpoint slides and I'd be happy to send them to you after the talk in early January.

    The assigned topic was "Advocacy for disabilities." I'm excited because usually when I speak about disability, it has to be very 101 for an audience of medical students or doctors in general. This time everyone already works in a disability field. I plan to challenge some assumptions - can people name disability advocates who are actually people with disabilities? What are the differences between cure/awareness organizations and advocacy/activism ones, and which ones tend to be run by disabled people? I can't say what I want about Autism Speaks but I can put their mission statement up next to ASAN's and let people draw their own conclusions. I plan to go through the disability civil rights movement and talk about the implications of Section 504, the ADA and the IDEA that relate to our field of developmental pediatrics. I want to mention/quote as many disabled people as possible, and point out that we should be empowering our patients to know their history and become advocates themselves. And then I plan to tell some of my own stories. (I'm openly disabled although not openly autistic at work.)

    1. Yeah getting to challenge stuff!
      Attributing as you go and then references at the end sounds fine to me, and good luck!

      (Oooh, how are they gonna react to the fact that I'm Autistic, capital A, not a person with autism? :p)

    2. This will not be the first time I have brought up Autistic Advocacy with this audience - I've done things on cultural competency including Autistic Culture as a culture, described ASAN and Autreat, quoted people as Autistics and etc. People may not have changed their own language but they haven't challenged mine, which for a bunch of medical model folks may be the most I can expect.

      Overall, while we have attitude and language problems in our department, Obligatory Person First isn't one of them. We do have the social worker who cringes every time I refer to myself as having a disability, which is a related problem. I address this by continuing to invite her to my talks. . .

    3. This will not be the first time I've brought up Autistic Activism with this audience. I've done cultural competency including Autistic Culture, described ASAN and Autreat and quote Autistics every chance I get. People have not necessarily changed their own language but they have not challenged mine, which for a bunch of medical model folks may be the best I can expect. While we do have language and attitude problems in our department, Obligatory Person First is largely not one of them. We do have the social worker who cringes every time I describe myself - proudly - as disabled because she "doesn't think of" me that way. I address this by inviting her to my talks. . .


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