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.
