Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Don’t Call Me a Self-Advocate

This is a re-blog of a post originally made on February 11, 2013.

a boy and his cat

[image description: a black and white photo of a transmasculine person snuggled in his sleeping bag on a cold morning, interacting with his cat who is also snuggled against the chill. Photo copyright 2016 Sparrow R. Jones]

I don’t self-identify as a self-advocate.

Oh, I am a self-advocate in that I seek to fill my needs and (most of the time) am able to ask others to help me get what I need. I am a self-advocate in the sense that is usually meant when goals are set for an Autistic that include the goal of helping the Autistic person learn to navigate systems, ask for what they need, explain their autism to others, and so forth. There is nothing wrong with self-advocacy and I strive to be a self-advocate and to encourage others to do the same.

But self-advocate is not my self-identity. I am an advocate. I am an activist. And so are most of the Autistics I notice being called — or calling themselves — self-advocates.

I’m not writing to try to tell others how to self-identify. I believe everyone should have the autonomy to self-identify as they see best and the rest of us owe them the respect of calling them what they have identified themselves to be. It is a cornerstone of human dignity to be able to say, “I am this,” and have others respect you as such. I will cheerfully call anyone a self-advocate who chooses to identify as a self-advocate. And I don’t judge or seek to diminish those who choose that identity to describe the outreach they do. It’s just that it’s not my identity.

I do think I understand how this term came to be so widely used. Our allistic (not autistic) allies were advocating for us (the best ones were doing so by doing what Kassiane calls “signal boosting”— that is, repeating our message for those who will only hear the words if they come from someone of a different neurotype) and so they came to be called “advocates.” Someone noticed that Autistic people were advocating as well and they decided there should be a special word so people knew that the words (or art, or music, or performance) were coming from an Autistic person themselves. Digging into the pre-existing autism terms, they came up with self-advocate and ran with it.

The problem is the term is dismissive. It is demeaning. It is en-small-ing. It is infantilizing. And it is wrong — we are advocates, not self-advocates, when we do and say the things we do and say to try to make the world a better place for all Autistics. That’s the key there: all Autistics. We are not self-advocating; we are advocating for our entire tribe.

It shouldn’t even feel natural to call us self-advocates when we come forth to speak and write about how Autistics are treated, what Autistics need, what Autistics deserve. I ask you this: do all of these sentences sound natural and right to you?

  • The Reverend Dr. Martin Luther King Jr. was an important African-American self-advocate.
  • When Rosa Parks refused to sit at the back of the bus, she was engaging in a bold act of self-advocacy.
  • During Vietnam, Buddhist monks became self-advocates by setting themselves on fire.
  • The SDS was a student-run organization of political self-advocates.
  • The National Organization of Women regularly engages in self-advocacy surrounding issues of importance to women.

Do you begin to sense why I have issues with the term “self-advocate?”

When I started Googling to see if I could find other Autistics who were not pleased with the label “self-advocate,” I was not surprised to see that I am not the first person to take issue with this label. The first page I found belongs to Corina Lynn Becker, who writes, “In my opinion, self-advocacy is asking for a glass of water. This is not what I do. I am not asking for my human rights; I am demanding them, not only for myself, but for the rest of my community.”

When we are called self-advocates, it is easy to ignore what we say about the current generation of children who are growing up Autistic. “oh, she says some very important, provocative things! But my child is different. My child will never speak or drive a car or get married. She is not talking about my child; she is a SELF-advocate.”

No, we adult Autistic advocate are not like your child. We are not like your child because we are not children; we are adults! You cannot automatically tell what our childhoods were like by just looking at us or hearing us or reading our writing. Calling us self-advocates is the easiest way to disregard something you don’t even know.

When we are called self-advocates, it underlines the myth that we have no empathy by positing us as activists who are only advocating for ourselves. Because how could an Autistic advocate for other Autistics? Without empathy, we must only care about our own personal situation, and especially not the lot of those we will never meet. (That, in case you didn’t realize, was sarcasm.)

Sure, I write about myself. I write about myself a lot. But my stories are offered up as case studies, as examples. I advocate more for other Autistics than I do for myself. When I first re-opened this blog, I wasn’t sure what my focus was. Over time, my focus has become very clear to me and it is to do whatever I can to protect the children and to help them grow up strong and free with happier childhoods than I was able to have and healthier adulthoods than I have ended up with. I don’t write to change my world. I doubt that much of what I write can change my world. My chance has come and gone; I write to change the children’s world and to do what I can to build a better future for autism and for the Autistic. This is not self-advocacy. This is activism.

Another Autistic I found writing against the idea of being called a self-advocate when one is actually reaching out in advocacy for all Autistics is Neurodivergent K. She writes: “Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it’s seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what “real” advocates have to say. I’m just talking about myself, you see. They’re doing the really real work, for we need the great allistic savior! We’re cast as sidekicks in our own movement.”

K suggests that it is the allistic advocates who need the special term, not us Autistics. She says they can be allies or parent-advocates while we take back the word “advocate” for ourselves. I agree with her. Or just call us all advocates, for that matter, because why does there even need to be a separation? If we are all doing battle to improve conditions for Autistics (and have no doubt that if we improve the world for us, it will improve for everyone. This is how it has always gone in the past when an oppressed group finally won the fight to be viewed as fully human beings) then we don’t even need an “us vs. them.” We are all advocates. We are all activists. We are all struggling to be part of the solution.


Important conversation on this topic moved from the old blog:

Posted by chavisory on February 11, 2013 at 10:36 am 

I’ve always been uneasy with the term and couldn’t really put my finger on why…this post captures some of it. There’s an implied condescension…indeed, like we aren’t the “real” advocates. And it creates an illusion wherein a lot of parents can think “My child can’t self-advocate because she can’t write like these people can, so these autistics are a fundamentally different group of people who have nothing to do with my child’s needs and I don’t have to listen to them.”

And also I agree that I’m not primarily advocating for myself–I have an education, I have control over my own life, I’ve more or less successfully carved a little niche in the world for myself–I’m standing up for other autistic and neurodivergent people to be treated with respect and acceptance, and for other children today to be thought of as capable and having rights and as being future adults and not eternal children.

What I think of as “self-advocacy,” when I was a kid was just called “standing up for yourself.” Funnily enough, no one liked it when I did it back then, either.

Posted by Zr on February 12, 2013 at 10:20 am  

Autistic people are “self advocates”, Neurotypical people are “advocates”.
Autistic people have “special interests”, Neurotypical people have “interests”.
Autistic people have “special needs”, Neurotypical people have “needs”.
Autistic people have “splinter skills”, Neurotypical people have “skills”.
Regardless if it’s the same thing(s) in both cases.


1 Comment

  1. I did an act of advocacy in response to a nasty autism mom on my Youtube who tried to poo-poo me as not really autistic because I can speak. She looked at just the one video and spammed her nasty comment to all of the videos on my channel without watching them.

    I’ve posted my meltdowns because it’s my choice to and I want people to see that I go through it too. I want autistic people to know they shouldn’t feel ashamed for their neurology or being themselves. I’m “visibly” autistic– I stim in public, I screw up socially and sometimes I’m clumsy– but that’s what makes me ME. I consider myself cute and quirky, but those are aspects of my personality. Autism makes my quirkiness turn awkward a lot.

    I shrug because I’m not going to entertain the opinions of people intent on ignoring what I have to say.

    BUT…I think I’ve busted holes in what people know as the autism spectrum and I kind of hope it takes off and goes viral. I hope it gets into the brains of every person who accuses an autistic person of not knowing what real autism is or dismissing them because they communicate understandably. I’m fighting back against the image that autism is all about suffering, meltdowns, screaming and stress.


    Because you are absolutely right. Self-advocate is demeaning and continues to perpetuate the idea that we’re less when we’re not.

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