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: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

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Friday, April 4, 2014

Disney connections and the ableism in the descriptions

Warning: Discussion of ableist mess, discussion of ableism, murder, abuse, improper medical treatment

EDIT: I got asked what the burrito test is. Essentially: Can a resident microwave a burrito to eat at midnight because they feel like it/are hungry? If no, probably an institution and abusing power imbalances.
There is an extended burrito test with a bunch more levels as well, but a surprising and scary number of residential places for disabled people fail even this level.

I read this New York Times article. I wouldn't have read it on my own, I could tell from the title that it was going to be an ableist mess, but when a disability studies professor is looking for Autistic reactions to a [frankly pretty terrible] article about autism... yeah I'll sometimes dig through the pile of ableist nonsense. And that's what it is, almost entirely. [There are a few good bits where parents make a breakthrough in their own understanding.]

Heck, the first sentence is terrible. “In our first year in Washington, our son disappeared.” Way to buy into the disappearing and kidnapping and autistic people aren't really there rhetoric. Do you know how much mistreatment gets justified because we (all the disabled people with speech issues, not just autistic people) supposedly aren't really in there and supposedly don't know what's going on? Do you know the kinds of abuse those of us with mental and cognitive disabilities received at the hands of caretakers who believed we could not feel pain, that we weren't really there? Do you know how recent that is? My aunt, who I'm named for (her name was Hillary) was often not given needed pain control medications for medical procedures because of her disabilities. Amanda Baggs was not given propersedation for surgery just last year. I know about Amanda because Amanda blogs, but there are more cases like this (and ones where the surgery doesn't happen, where autistic people are just allowed to die) all the time, because people think of us as not really there, as empty shells. Is this rhetoric a loving parent should ever go anywhere near? NO. But it's the first sentence. You know this is going to be a long and rough ride.
It continues. They describe looking for ways to help their child, ways to figure out the regression (and there were skills lost, this happens sometimes, not just in early childhood) as looking for clues to a kidnapping. I'd look for clues to overload and burnout, also to see if seizures are happening, you know, things that can often cause a person to lose skills or not have the resources to use skills they would still have if only they had the energy, but no, it's clues to a kidnapping.

Then they vanish. That child's gone. Enough with the “not there” rhetoric, parents and caretakers and doctors. Enough with the idea that autism struck.

And maybe, just maybe, if a kid seems happy and focused while doing something you don't understand, the assumption should be that they're doing something with a use you don't understand rather than something pathological? Maybe the assumption that our misunderstood speech is gibberish could fall to the assumption that maybe we're running words together or having pronunciation issues? Kids have pronunciation issues sometimes, you know. [My “r” sound is still not-quite-standard for English, folks kept telling me it was in the back of the throat and I couldn't make that one, but in sixth grade I started taking Chinese and I learned to make the “r” sound used in Mandarin Chinese. Which is the one I use in English as well because it's a lot closer than the “w” I used to make.]

Owen's repetition of “Just her voice” as they eventually figured out it was, that? Oh, I'll totally buy that Owen is making the connection between losing oral speech himself and Ariel losing oral speech. People make connections like that, and when someone who can often talk or who used to be able to talk now can't? Yeah we notice, cause shocker, we didn't vanish. Speech giving out on us is very different from us vanishing.
Then we hear from the doctors. They need to shut up and listen to Autistic people about echolalia and scripting: Yes, sometimes it's not the words we're intending to say, Emma's mentioned that and her mother expanded on it, but often it's how we learn language and often it's how we put together our language and it absolutely can be used for communication. And, oh hey, we get parents being happy that kid isn't flapping as much. STAHP. Stimming isn't the devil, it's something we do for a lot of reasons including calming ourselves down. Trying to keep us from stimming, though, that absolutely can be the devil.
Ugh assumptions that we don't understand what's being said to us. Whyyyyyyy. [Though deciding that it doesn't particularly matter, the important thing when kid goes to theme park is that kid is happy? I can get behind that.]

I'm glad that they figure out Owen is thinking interpretively when he says something that makes it pretty obvious, but the shock that a kid can think interpretively? This is not presuming competence. When you presume that disabled people can't do a thing, you don't give the opportunity to prove that we can. And often, we can. Often, we know more than people realize we know. Not being able to speak is different from having nothing to say. We have rich experiences, same as everyone else.
[Reminds me of the “of course he can't read it” bit that I think comes later. You don't know that. Plenty of autistic kids do start reading before they start talking. Neurodivergent K did. This happens. I don't know that he can read, but I'm mistrustful of parents basing “can't read” on “can't read aloud.”]
Oh here we are. Iago, the parrot. That was actually a smart move. I'm not a fan of deception, but I'm not going to deny that “work within echolalia as a character from a movie your kid echolails” is a good idea. It's a really good idea, actually, working with what your kid does in order to help them learn stuff in the way their brain works.

At the point of the Iago breakthrough on the parental side, they do seem to finally have some understanding of how Owen is learning. [Yes, this is a breakthrough of the parents figuring something out, likely happening around the same time that Owen locked the skill down enough to start coming out in sentences again. And yeah, going really fast from pretty much no speech to full sentences is a really common autistic thing. I don't know for sure that the parental interpretation we're seeing is correct, even here, but this is at least an interpretation I'd buy until and unless Owen says different. It makes sense, and working with it got words and sentences spoken to other people.

Uneven, unsteady progress is kind of the name of the game for a lot of autistic people, so I'm not surprised that Owen's doing this too. And the frustration of a school administration deciding that a child is just too disabled, boy, do I sympathize with Owen and his parents there. That's a horrible thing to hear, and since it's a private school, they can do that. That doesn't make it any better. And it stings to hear ““Look, not picking up social cues is just too great a burden.” Because guess what I have trouble with? Guess what, at 21 years old, as a triple major in a pretty freaking selective study abroad program, can't consistently do? (the program directors have done a really good job protecting me from the nonsense of a university that initially didn't want an Autistic student and probably wouldn't have taken me at all if the USA side hadn't pointed out that it's bound by the ADA, even if the Chinese side wasn't.) So yes, I'm writing this while in a program that didn't want me because of autism awareness, telling you that I have this problem too. My advantage is that I'm good with language. Making oral speech happen is iffy, but when it's working, I can be very good with it, too.

And of course Owen knows. Of course he does. The face that his parents have learned to recognize as one where he fears he might cry, of course he knows what's going on, being rejected for who he is. (Why is he afraid to cry? Has he been pubished for meltdowns?)
Ok, so why is the term for stimming “silly.” No. No. No. That's not what anxiety-stimming is (and that's my guess for what's happening, some sort of upset-stimming.)

Eventually we get to another parental breakthrough, of learning Owen's language- connecting to the idea of the sidekick, and Owen's statement that “no sidekick gets left behind.” It's terrible to see the idea of only ever being the sidekick, not the hero of his own story, but the sidekick to someone else's, so internalized, but if it's going to be internalized, at least he's doing it by seeing the value in himself and others, in what they are good at. And it is true that the sidekicks in Disney movies (especially the princess ones) are more fleshed out, given more flaws that real people have, than the main characters have. This is actually true of a lot of stories, giving fewer identifiable quirks to the hero's so that more people can paste their own identities onto the hero's face[i read an article about this recently, where's the link], but here's the issue: what if you're told you can't be the hero, explicitly or otherwise? What if you better identify with real characters with real quirks? It's those of us with the biggest differences from that mythical but privileged average mind, that mythical but privileged “normal” body, who are told we can't be the hero and left to identify with the sidekicks. It's those of us who most need to be told we can be the hero of our own story who are left to be sidekicks.

Finally, we see a therapist who seems decent: One decides that the family realization of using Owen's interests to help him learn is actually smart. Shocker, it goes well.
Now we get an interlude for the monetary cost. I could see it as an argument for universal education, for universal health care, but in a piece about an autistic person and connecting with them? Unless the point you want to make is that the system is very, very broken, no, this does not belong. It fits too well with the burden rhetoric, that same rhetoric that makes people think it's OK to kill us. No. Stop.

Worry about the future is very real. I won't argue with that, though their nightmare probably shouldn't be a nightmare. Owen doing well in his program, starting a Disney club, is also cool, though I worry about residential programs because I know what kinds of freedoms they tend to take away. I wonder if this program passes the burrito test. The Disney club, though: I will make no effort to deny how cool that is. That's win. Starting and running a club based on an interest, finding others with similar interests, the club growing? That is wonderful.

The insights made when people interact on our interests? Also wonderful. The shock and astonishment at these insights? Not so wonderful. It's missing the idea that we're interested in things for reasons, something that tends to get lost when our interests are pathologized. This happens unfortunately often, and it cuts off a lot of opportunity for growth.

The end of the article, I mostly like. I think that's because it's mostly stuff from Owen, his own insights, like how life isn't a spectator sport and how the gargoyles are different because they're vessels for things that the character already knows but maybe needs a trick to access.

But the realization of “Oh jeez, Owen already is an adult.” That's a thing. I go back through this. Owen's about a year older than I am. How does he feel about this article, about the book that this is apparently adapted from? Did he give permission for his life to be spread across the page like this, to be spread across the web? The internet is forever, if and when he applies for a job potential employers will read this article, and they will see what he was like at 3 and 4 and 5 and 6. I'd love to be able to trust that Owen gave permission for this, freely, but without it being stated somewhere explicitly, I can't trust that. That's a sign of how people tend to think of Autistic people: not fully people, not deserving of the same privacy as others, obligated to spread our lives on the page for theeducation and edification of the privileged norm.


  1. Loved your analysis! Thank you!

  2. Absolutely loved this. Thank you. -marylou

  3. Good review. I did wonder, reading the article, whether the first line ("disappeared") was setting up an idea for the rest of the article to refute. I'm actually still not sure about that--I think the optimistic reading works really well with the "just your voice" article where a doctor falsely tells them he's not in there, but not so well with the rest of the ableism of the piece. I wonder whether the average reader gets through still not understanding that Owen obviously DIDN'T disappear. Here's hoping Owen one day writes his own perspective on this piece to clear up (a) whether he agreed to it and (b) its accuracy.


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