20 August 2011

Self-Advocates: Parents Are Not (Always) Our Enemies

After reading conversations in the comments on blog posts or news articles, or even on posts on social networking sites like Facebook and Twitter, it is very easy for self-advocates to assume that all (or at least most) non-Autistic parents of Autistic children are our enemies. After all, most people who want to cure Autism are parents; most people who claim that "high-functioning people with Asperger's" aren't really Autistic; most people who claim that all self-advocates are in fact "high-functioning people with Asperger's" (which isn't true); most people who want research to focus on curing Autistic children; and most people who loathe the word "Autistic" and much prefer "person with Autism..." Well, most (but certainly not all) of these people, or at least the most vocal among them, are the non-Autistic parents of Autistic children.

The vitriolic fights between self-advocates and parents can be found quite easily anywhere on the internet -- and occasionally, in person as well. There was, actually, a very nasty email exchange quite full of ad hominems and personal attacks about two weeks ago among some of the members of my subcommittee along those lines. (I did not add fuel to the fire, for the record.) Parents get furious with self-advocates for presuming to understand their children; self-advocates get furious with parents for completely misunderstanding the entire nature of Autism. Parents make us out to be the villains; self-advocates make out parents to be the villains.

This in mind, it never ceases to surprise and excite me when I actually encounter parents who agree with any or all of the issues most important to Autistic self-advocates. Last week, I had a wonderful conversation with the non-Autistic mother of a young Autistic son. Her son is non-speaking and has some difficult, destructive behaviors. According to her, he regressed with Applied Behavioral Analysis (ABA), but is doing very well with the TEACCH program.

This woman told me how she eschews the phrase "person with Autism." "My son does not have Autism," she said, "he is Autistic. Autism is a part of him. It's part of his personality. I love him the way he is. Other parents don't get it." She told me that she doesn't want to cure her son. "I'm so inspired by you -- by Autistic adults who I read on the internet. I'm fascinated by you. I wish other parents would understand that my son, their children, are going to grow up to be you, Lydia. They're going to grow up to be Ari [Ne'eman.]"

"Parents think, I got a good placement for my child, I don't want to rock the boat. No, sorry, I can't help you," she said to me. "But what happens to one child affects all of our children. We have to treat it like a civil rights issue." Now that piqued my interest, because the self-advocacy and neurodiversity movements treat our advocacy with the civil rights model as opposed to a medical model. It was strange and yet reassuring to hear this from a parent!

Not only is this woman not Autistic, but her son is what most people would call "low-functioning" or "severely Autistic." She fits the profile perfectly of so many parents who viciously attack the self-advocacy movement. Yet she shares in many of our goals and beliefs. So yes, the mythical parent allies of self-advocates do in fact exist. Let's remember this before accusing all parents of being our enemies.


  1. Lydia,

    Is there any way to follow your blog through Facebook? I'd love to have an easy way that I actually use daily to keep up with it.


  2. No, I do not currently have a feed to Facebook. If the blog grows in popularity to, say, hundreds of people, all of whom demand such a feed, then I will consider adding a page. Currently, the best thing you can do is to enter your email address at the top of the page (left hand side), which will email you whenever I write a new post.

    Blessings and peace,


Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.