How Indistinguishability Got Its Groove Back

is something that might someday appear in all its parts and might not. Right now I'm primarily interested in writing about staff infection. Spoiler alert though: the answer to "how did indistinguishability get its groove back?" is exactly that.

Or like I said before: it never really lost it.

I think there are two reasons "staff"--very broadly defined as doctors, teachers, therapists, aides, and a million other people--end up trying to control people with disabilities.

1. They believe people with disabilities inherently need to be controlled.

2. They get in a position of power because of people with disabilities' support needs and/or youth, and have the opportunity to make people with disabilities more convenient to deal with.

Whichever reason is not your reason can be used as a straw reason to support the real reason. I could give examples but basically you know it when you see it. Doing this relates to the Harder Fallacy and Shocking Behavior and things like that.

The way indistinguishability got its groove back is that a person with power looked at a person diagnosed with autism and decided they didn't like the way person's body looked or the way the person felt about things. Or (I say when I get angry) the way the person said no.

The person with power started trying to change the person with autism's body (or whatever). The person with autism couldn't defend themselves because they couldn't talk. Or, if they could, other people felt their beliefs, opinions, and arguments were inherently weaker than those of people without disabilities.

The person with power told their coworkers or their employees or the other people in their field to do the same thing. They by and large did.

Occasionally someone was bothered by it but afraid of losing their job, being seen as a pushover by their coworkers, or not being respected by other autism scientists. But most people weren't bothered. Maybe the original person with power was very charismatic and converted them. Maybe they already didn't like how the person with autism's body looked. Maybe they just didn't think about it, accepted it as part of their job, and eventually came to be a little passionate about its rightness. After all, no one was trying to change their bodies.

When I say this happened once I mean that people in power make this decision about people with autism on a regular basis. Probably as you are reading this a person is deciding to be this way, and their decision will spread because it doesn't occur to many people to question it.

To some extent this is true about any decision within that dynamic. Let's say someone decided that all kids with a certain disability have to play soccer, or read Tarot cards. I think this would actually catch on to a greater degree than you would expect. But indistinguishability is such a historically popular thing for people in power to choose to force on disabled people that it has a kind of momentum. You just think about it and it's already there.

Every person in power who unthinkingly chooses or supports indistinguishability is adding to its mass. It's an army of laziness, an army (usually) of feeling safe in your body. Of being able to talk about how much you love The Office in between sessions of training a kid with autism not to make jokes that don't have an obvious punchline. It's easy to do pretty much anything to people with disabilities but indistinguishability has an army.

The pressure of the army makes room for more soldiers. Obviously. This has all been an excuse for a pun. The way indistinguishability got its groove back is that indistinguishability actually is a groove being worn into the fabric of society by sheer constance and bullheadedness. Have a nice day.

3. How you learn how things are done

My dad told me that most parents wouldn't understand my "visceral reaction" when I see indistinguishability held up as an ideal, or even as something that would be nice. As if we were talking about religion, which he dislikes, he said, "Maybe it's not important and it's not what they should want, but most people want to be normal, so they want their kids to be normal. You can't tell them their choice is wrong."

"I don't really think it's parents who make that choice," I said.

"Oh, so it's just the evil professionals making parents do what they want?"

"Well, yes." Not that I think professionals are evil--this is really about staff infection, not individuals. Lots of the infected are probably great to play Dungeons & Dragons with (more on that later) but they have a particular way of thinking about people with autism.

Parents often don't. I know how I feel about disability in general and autism in specific, because disability is a permanent part of my life. For the average person that isn't the case. Now they have a kid who who has this--what do you call it? Disease? Mental illness? Neurodevelopmental condition?--well, they have this scary autism word that you see on TV. What the fuck. This is terrible. What do they do? What are they supposed to think?

It's perfectly normal, when something happens which is challenging and with which you have no experience, to look to the people around you for examples of how to respond. If your kid has autism, the people around you are often telling you that "recovery" for someone with autism is about looking non-disabled, and that this recovery is urgent, so you go along with it because you're not a fucking autism expert. You don't know how things are done.

Unfortunately, it's exactly the powerful momentum of how things are done which keeps people from thinking much about the things they are doing. Sooner or later the parents know how things are done too.

2. How Indistinguishability Keeps Its Groove

I'm sorry to mix metaphors because I often compare zombies to people like me (unusual gait, does the same things a lot, often judged to be better off dead) but let's focus on some different aspects of the zombie and swivel that image over to another group of people: staff.

How did you get your groove back? Well, indistinguishability, you never really lost it, and that's what scares me. Maybe this is a failure of mine because how can I be more scared by a difference of opinion than I am by more obviously bad things, like violence? I'm not sure. I know I find vampires pretty unterrifying when they're sadistic, but zombies are unbearable because they don't even know or choose the crimes they commit. There's nothing to explain.

So what I'm trying to do is explain. Not why I'm against indistinguishability, cause I have, but why it seems so stupid when I say that, like I'm against electricity. People respond with the most ill-thought-out support, and it doesn't matter at all. "But flapping your hands is against social norms and kids need to learn to follow social norms!" Across the country, kindergarteners are told to be yourself and do the right thing even if it makes you stand out--except when it comes to this one group of little kids. "But other kids will notice that they're different and exclude them!" Okay, just like when kids are bullied for race or religion their teachers start training them to look like white Protestants. Maybe you're thinking people can't pretend to be white, but some people can--and besides, good luck convincing his peers that a kid who can't talk isn't disabled, even if he keeps his hands by his sides.

This is a completely meaningless argument though because anyone who defends a point so weakly has already won. Even if someone says "Yeah, I guess you're right," it's like some interesting philosophical discussion about unicorns. Intelligent input darling, now let's go back to our day job where we kick horses in the face for having horns when they shouldn't.

"Hey hold on," you may be saying, "I'm not kicking anyone in the face! I'm just writing a behavior plan where if Erica talks about unicorns too much she doesn't get dessert."

That's cool but a lot of disabled people have had to live with this stuff longer than you have, and it kind of feels like being kicked in the face.

"Aw, but it doesn't feel that way to me."

That's because it's your job. Everyone's job feels normal to them. Our government likes to pretend that Abu Ghraib happened because Lynndie England is a bad person, but she just had a work environment where she thought it was normal to act a certain way. I know this is an aggressive comparison, but there isn't a point of wrongness where the things that you're doing suddenly feel wrong. I feel that if people were more aware of the broad spectrum of things that can feel normal when it's your job, it would possible to engage them in real conversation about what they do.

what not existing means to me

Thinking of trying to post here more.

So I'll just say the social skills conversation makes me CRAZY*? It's become yet another of the things I can't even stand to talk about kind of like when someone tries to tell me I'm high-functioning and can self-advocate.

(*I don't EVER think it is a problem to talk about and examine language use but I'm not necessarily for having rules about it, so please don't comment and tell me why you don't think I should use the word crazy, I know why you think that and I think about it all the time.)

and today I flipped out at my friend just because he happened to say something about having social problems, in a kind of "well, you know, you and I are different this way" sort of tone. I think I said something like, "NO! I'm so fucking sick of people like you getting everything and being THE ONLY PEOPLE IN THE WORLD" which after I said that I was kind of like, shit, what am I talking about? what does that mean? why am I mad?

I am not really mad at my friend, or another Autistic friend at whom I blew up similarly about two weeks ago.

I'm mad because before I got to know other people with autism and DD, I thought I was some kind of Super Minority, in fact I did not consider myself to be on the autism spectrum at all, because I was told that "Asperger's" or "HFA" (the type of autism I was supposed to have, being a college student who could talk) was primarily about "lacking social skills" which apparently in a classic form meant not reading facial expressions (which I'd been tested on so I knew I could do it), insulting people by mistake, making people listen to speeches about your interests, not being polite, not knowing what people were feeling, and so on.

So I wasn't like this so I usually didn't consider myself to have ASD. In fact sometimes I knew things about people that other people didn't know.

At the same time, it was pretty clear I was kind of batshit* (in terms of how I processed life and how I felt sometimes) and I also had trouble with things related to friends that no one I knew had trouble with. For example when I was a first-year in college I got really attached to a friend named Clayton and wanted to spend time with him every day, so I would go sit outside his door. He would be happy to see me when he was there but he usually wasn't there so I'd just be sitting there reading and doing my homework and I HATED myself. I liked him so much that I wanted to see him all the time but I got so I hated everyone who lived on the same floor as him because I thought they were watching me and thinking how I wasn't normal and I was some kind of creepy stalker, and the next year when Clayton started living with the guy who had lived next door to him it took me a long time to stop hating him because I believed that he judged me.

The next year I had a friend named Noah who was a good writer but wanted to quit writing because it made him depressed. Noah spent a lot of time listening to me talk because he was a quiet person and it made me miserable because I felt that Noah and I didn't have an "equal" friendship, so I snuck onto Noah's computer and read pieces of his writing that he had forbidden me to ever read. It caused a huge problem in our friendship that I sometimes think has never gotten better, and it happened because I was trying to do what I thought was the right thing. (For some reason not one but two people who read my blog and who I attempted to be friends with have used this story to illuminate something about me they don't like. Thanks guys. I actually already feel terrible about it and find it hard to write about because it was an awful experience, AND I'm not the kind of person who would ever do something like that anymore, so it's not even a good example of whatever you don't like about me now.)

In the last year of high school and the first few years of college, I considered a girl named Lisa my best friend. I stopped considering her my best friend after a fight we had on the phone until four in the morning, my senior year, about ten months ago. A lot of our fight had to do with her feeling that I was mean and overly strident about anti-ableism, something she told me she "just [didn't] care about, I guess I should, because you're disabled, but I just don't." I could be wrong but I wonder if she thinks that identifying as disabled is some new thing I just invented/discovered and isn't who I really am. It's something that makes me feel oddly guilty and start questioning myself--because if Lisa doesn't remember me being disabled, then how is it even real? She's my oldest friend and should be the best judge of things that are phases or poses.

But it was a really long fight, and towards the end Lisa started talking about how when we were first becoming good friends (I was about 16 and she was about 15), whenever we had a conversation I would talk for a while and say, "I've been talking too much, now you talk." Lisa can be quiet with people early on, and it made her feel bad like I was constantly criticizing her for not talking in the way I thought was correct. She was saying that early on things from our friendship still affected the way she felt about me and it was hard to get out of resenting me for them.

Obviously, "I've been talking too much, now you talk," looks to me very much like sneaking on Noah's computer because I thought our friendship was too one-sided, and being upset that with Clayton I always sought him out. Whatever you call that problem, it was the biggest problem I've ever had in relating to other people.

Anyway, before I got to know other people with autism and DD, it was obvious to me that I had some disabled type problems like moving a bit differently and loving things too much and getting so frightened that I couldn't sleep or recognize words, AND I also considered myself to have "social problems" because this stuff with Noah, Clayton, and Lisa wasn't something that most people seemed to worry about. My social problems were not textbook autism problems, so I figured my autism must be very mild, but at the same time they seemed to wreck my life so much more than just being rude or not reading facial expressions. When I would interact with people who I imagined might be "autistic"--people who monologued a lot and weren't very sensitive--they seemed SO much happier and less distressed than I was and they seemed to pretty much have friends and not be killing themselves over whether they were calling their friend on the phone first or their friend was calling them. So how could I be more "high-functioning" than these people? My social life occasionally exploded into these awful periods where I was convinced everyone hated me and I felt sick. Also, it was nearly impossible to make new friends, because I figured that all of my friends' friends would never want to be friends with me because I was such a fucking freak.

Where am I going with this? Well, when I got to know some more people with autism and DD, and I began to think critically about this, I came to some conclusions:

1. A lot of people with autism aren't at all like the textbooks.
2. Autism is a lot more than social stuff, even for people who can talk. (This came out of a long period of thinking of myself as "more like a severely disabled person, except I can talk" because severely disabled people were allowed to have a lot of emotional troubles and problems with transition and stuff.)
3. Eventually: social skills don't exist.
4. I am a human.

I know I am disabled, and accepting that has really changed my life, but so has believing that I'm not socially impaired. In February I went into the first class of my last semester and made an awkward comment/joke to the girl sitting next to me. She looked at me blankly and I started to feel about as low as a Yeerk squashed under an Animorphed elephant's foot. It almost ruined my whole day--then I thought, we have different senses of humor! Maybe she doesn't have much of a sense of humor at all! She isn't a representative of humanity, and I haven't lost a war. We're just NOT THE SAME.

Or, God forbid, someone doesn't understand something I said. This used to be something that I would actually LIE about and argue about to anyone who I perceived as trying to tell me that I wasn't normal and couldn't do everything I thought I could. "Of course they understood me! You're just being overprotective! Maybe there's something wrong with YOU!"

Hey, guess what: my speech is hard to understand. AND sometimes I say things in a way that is jumbled and not connected. Oh no I'm going to drop out of school and delete myself from the universe. No, actually, I'm fine and I'm just going to say it again more accessibly. Life is good.

The problem is

I am very political about disability because politics has saved my life.

I have never been able to finish writing about going to a doctor this winter. I sought out learning testing because I was really confused by how slow I felt and how hard it was for me to do schoolwork, Activities of Daily Living, and other things. I seriously thought some kind of huge mass was missing in my brain because I just was not happening. I considered suicide because my friend gave me the relatively simple, but unexpected, task of taking his car to the gas station when I was driving it. I started crying and begging myself to drive into every truck I passed on the road, because I COULDN'T GO TO THE GAS STATION, it was too hard.

So, the doctor diagnosed me with some learning disabilities which aren't very severe and which I'd already been diagnosed with before. And he kept telling me I was really smart, something I'd also heard before. This increased an already very suicidal winter and early spring to fever pitch. I cried every time I met with him. I wanted a brain hole. Sometimes I still do. What is with the gas station? Why can't I just go there?

I don't know.

So, the worst thing about meeting with the doctor was that he didn't believe I had autism. In addition to getting my learning testing, I was also hoping to get a re-diagnosis of ASD because I hadn't had one in 8 years and I figured I might need more recent documentation at some point. Unfortunately, the doctor was very well versed in learning disabilities, and didn't know very much else about bad brains. Every time I talked to him, I would make the mistake of referring to myself as having autism, and there would be this little record-scritching sound.

"Autism! I thought we agreed to throw that out!" (in the same tone of voice he used when telling me I am smart)

Then he would explain to me that if anything he might be convinced I had Asperger's, not autism, because it is strongly associated with one of the learning disabilities I had (even though I had very good eye contact, he said). Every time he said this, I would explain that Asperger's, PDD-NOS, and Autistic Disorder are all on the autism spectrum, and when I referred to myself as having autism, I was just using the word that my disabled friends and I used about ourselves, which was in fact consistent with how the psychiatric community was coming to classify people, since the DSM 5 would have only the autism spectrum and not three separate diagnoses. He and I had this conversation probably six times, every time I met with him. The final time, I actually started yelling. "THERE ARE THREE DIAGNOSES THAT ARE CONSIDERED AUTISM SPECTRUM DISABILITIES. WHEN I SAY I HAVE AUTISM, I JUST MEAN THAT I HAVE BEEN DIAGNOSED WITH TWO OF THOSE DIAGNOSES IN THE PAST, AND I BELIEVE THOSE WERE CORRECT DIAGNOSES. I AM NOT THE ONLY PERSON TO REFER TO THESE THREE DIAGNOSES AS 'AUTISM.'"

"So that's the new thinking?" he said.

I began crying (again).

Now I know what you're thinking. Why didn't I just say Asperger's because that was a label he obviously would have been more likely to accept, understand, and associate with someone as "smart" as he thought I was? Why did I need to have this fight every time I talked to him?

I don't really know. I can't send letters if I think even one word is arrogant, shifty, dishonest, or undeserved (you can imagine this makes it difficult to apply for jobs, as I usually become really unhappy and take on some less urgent project to distract myself). I can't stop saying I have autism if that's what I think I have, and if having it has helped me define myself in a way that has radically changed for the better how I live my life.

I was not diagnosed by him IIRC, and I am not seeking rediagnosis now. Diagnosis of autism would require social impairment. Here's some stuff I could say:

I don't have a lot of friends.
I don't lose friends in fights more than anyone else, but I seem to grow apart from them really easily.
I have no romantic or sexual history to speak of.
I often don't fit in very well in the workplace.
I was bullied a lot when I was growing up.
I had few friends or no friends most of the time, from the time I was about twelve to when I started college.

These are actually true facts, but I don't consider myself socially impaired.

Here are two things that piss me off when other Autistic people argue with me and tell me that social skills DO exist:

1. when they tell me (admittedly, because I'm very confrontational and force them to say it) that they think I do have social impairment. I guess that this is really just a huge trigger/mental block thing where to me it means something much worse than what they mean, but to me, when someone says this, it's like they're saying that I have a false view of the world, and that makes me very upset.

2. when they tell me that I need to acknowledge that some other Autistic people are very different from me and have really different impairments from mine, and that even though my impairments aren't related to socialization, some people's are.

Number 2 makes me start thinking, what the fuck is autism then? Can autism actually be THAT different? But I will bite. Let's say that a few different disabilities look similar enough to have all been categorized as autism, and let's say that while all of my isolation and conflict with people blah blah DOESN'T come from social impairment, but just comes from other parts of my disability and/or me as an individual, other people with autism who have similar experiences with people actually DO have those experiences because of social impairment. The books don't describe me, but they do describe them. In fact, the DSM definition of autism describes them, and it doesn't describe me. So, the DSM and mainstream professional thought about autism at least starts to describe one group of people with autism, but doesn't describe me at all, and if I went to a psychologist and started telling them about what I consider to be my disability--i.e. cognitive and emotional problems and the relationship between those two things--it would take a miracle for them to diagnose me with autism. Because I have the kind of autism that's less real than the other kind.

So, to me, when someone starts saying, okay, well YOU need to understand that other people do have REAL SOCIAL PROBLEMS and REAL SOCIAL SKILLS DEFICITS, even if YOU DON'T, I feel like they are saying I'm fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably. I feel like I'm being kicked out of my own disability. No wonder I tend to prefer to call myself bad brains and insane in the membrane and Magikarp zombie waste of space. It seems obvious I belong in the Autistic community, and I even have that treasured thing: a fairly early diagnosis (from 1998, when I was nine), but I know that I would be said to have "grown out of it" or been misdiagnosed, by any reasonable medical professional--I know it can be taken away any time, and sometimes I feel that by being inseparable from the theory and values that prove to me I have a right to exist, I am making it easier for people to erase me.

I am saying this because I want to apologize to you, and probably other people I've forgotten doing this to before. It isn't you, and it's probably not logical. I panic and start hitting out.

what is an indistinguishable when it’s at home? that is, what do indistinguishables look like when they stand in empty rooms? who could love an indistinguishable? (people do, every day.) what happens to them?

how indistinguishable are indistinguishables? does keeping your hands by your sides really cover for all that could go wrong? what does it take to be an indistinguishable? what kind of thoughts are churning in the indistinguishable mind?

can indistinguishables cry? what does it look like? what kinds of places do indistinguishables go to to cry?

what sorts of feelings do indistinguishables have? what about people who were taught that being an indistinguishable was the first thing they should want—but are incorrigibly distinguishable?

what do indistinguishables eat for dinner? what do they put in their napkin? what happens to indistinguishables who pretend they can cook?

do indistinguishables have rumbly stomachs, or do they try to create a clatter to distract the people around them?

David Foster Wallace used to carry around a tennis racket to explain why he carried around a towel, which he actually used to wipe sweat off himself when he was scared. it’s a good story, but there is no indistinguishable pride parade. all the pride of indistinguishablility is like holding a taste in your mouth in a place where you’re not supposed to be eating.

in Sparta, a boy died holding a fox under his shirt while it chewed up his stomach. this has lasted for millennia as a story of something to be proud of, and why this is the case is something that people in power should be asking themselves, but asking themselves questions is something most people in power are too busy to do.

roommate is cute, slash I think some of this is useful

me: I don't know
I just think my life is a lot better since I stopped thinking of myself as being "socially impaired" or whatever
Liam: yeah
i mean its just a word
me: like, sometimes I make a joke that someone doesn't get or something, maybe it's because I'm different, but it's an interaction between the two of us, maybe we don't fit
Liam: yeah for sure
me: like, I used to just feel really embarrassed like every time i made a joke someone didn't get or something
like "oh it's my autism making me say stupid things"
Liam: i mean i find it way easier to hang out with you than a lot of other people
me: but I just think that's dumb and I feel like other people can think "that person didn't get my sense of humor" and they don't have to take it personally
dude I don't know do you find me to be like "simple" or "dense"? it's okay if you do
I just wondered
Liam: no
i think you are really smart
maybe child-like
i mean you get a lot more excited about things than most people
i think you also just approach things in general a little differently
but in a good way
me: I mean, that's cool
I don't mind being different. I just used to always mind the idea that I like...was supposed to be unaware of what was going on because of my disability
Liam: i mean thats totally not fair
everyone sees things a little differently
i mean i cant see red and green
me: aww
Liam: i think everyone is different and its easy to compare yourself to other people
i mean i always feel like im really slow
me: well I think I'm going to come to the library so I can type up my writing project
Liam: and bad at writing
me: it's easier to prop my notebook up on a desktop
Liam: cool
we are in a study room
me: oh
where?
wait are there desktops?
I guess I won't see you
:(

more normal = progress

I worked on this post for...um...well, a long time. Probably like 2 or 3 hours today without stopping for anything, and that's probably the third or fourth period of time I've spent on it.

more normal = progress

Basically it's a LOVE-NOS post showcasing the assumption mn=p, and how it's applied by professionals and laypeople to people with disabilities. I tried to use as many examples as I could think of to show how mn=p really knows no disability and can manifest at a lot of different levels, from seemingly innocuous to obviously vicious and abusive.

You should read it because writing it took over my life. You should also read LOVE-NOS in general because Julia wrote some really beautiful things that I can't take the time to link to individually because I haven't eaten anything in a really long time and all I can think about is food. But anyway, go over there please.

from the inside, #2

The reason I'm titling these posts this way is that they both are anecdotes that I think are really funny--and in this case, really cute--but I feel like they'd make absolutely zero sense to people who don't have a similar identity and experience to mine, re: disability. So to some people they may come off as being really strange and out of context, but I'm hoping someone from my kind of place will relate to them instinctively.

In terms of socializing, I used to always have a strong feeling that I liked my friends much more than they liked me, so that showing that I liked them was showing weakness and showing that I wasn't normal. I was always really afraid of stalking someone or being an obsessive friend so I thought of myself as having to play this game where I'd be kind of unkind to people or wait to call them until they called me first. Now that I can think about these things more clearly, I think that being nice to people and reaching out to them usually makes them like you; it's not more complicated than that with the people I know. But I still end up feeling some of these urges to withdraw from people because it seems safer and more normal and more dignified. I used to have some food issues and making someone feel like I don't like them, or not calling them, feels basically the same as not eating. I am a winner.

Anyway, the upshot of this post is just that my best Autistic friend and I always use the word "supercrip" to refer to the person who "wins" in any interaction--i.e. the person who hangs up first, is called rather than calling, or displays less emotional connection to what's going on. I just think this is a cool usage because it shows how when you have problems with your disability identity, you can end up relating disability to all your problems and seeing really strange behaviors and accomplishments as "not being disabled anymore," i.e. winning, i.e. being a supercrip.

all it takes

Tonight in line at the dining hall I was having a conversation with someone I kind of know. He was strikingly knowledgeable about when, in the mind of the register at the dining hall, the "dinner" period becomes the "fourth meal" period. Many people aren't clear on this, and when I am cashiering people will sometimes try to swipe their card at 9:30 after eating dinner at 5:30, not understanding that it is still the dinner period and their card won't work again until 10:01 when fourth meal officially starts.

So I was like, "Wait did you cashier at some point?" and he said, "No, but when I was a freshman I lived in the dorm in this building so I was here a lot," and I was like, "Dude I know that, we lived on the same floor," and he said, "Oh sorry, I remember." But as soon as I thought about it, I felt much sorrier than he did.

This guy (whose real speech style I am not even attempting to replicate) has ASD and Tourette's. He is probably everyone's stereotype of a person with "Asperger's"--I mean, now I think the unusualness of his speech is what's most obvious, but when we were freshmen he would always monologue about engines--isn't that the most stereotypical thing you can think of? He'd draw pictures of machines and explain them to people, for heaven's sake!

The way I treated him was just...barf. I was always trying to tell him what to do and how to talk to other people. He didn't get mad at me for this, but he'd never asked me to do it. I just couldn't help thinking that I knew something he didn't. I knew the proper way to act if you had ASD. You were careful. You never talked about anything you were interested in. And look, look, some people were ignoring him when he talked! I was right. Why didn't he just pick up on what I was trying to teach him so he could make more friends?

Except, then he did make a lot of friends, and became really popular. I hardly ever see him alone. He's involved in lots of extracurricular activities. Most people don't guess that he has ASD because he doesn't fit into their idea of it; he's not ~isolated~ by his ~pathology~. He's just himself, and almost everyone likes him for it.

I haven't spent a lot of time with this guy since the first semester of our first year. But being in school with him, and seeing how things turned out, was one of the things that made my frame on social skills begin to change. He is fine. He did not need help becoming more like me as I was then, or more like anyone else.

What's so important is that all it takes is to see one or two really naturally, visibly nonstandard people in a state of really awesome social success.

You stop chewing on your tongue while the person is talking, thinking about what they should be like, what they probably just don't understand is the right way to be; you stop cringing for what's going to happen to them if they're not careful. You just see the person. You see that they're really cool. You see that you weren't treating them like an adult, before.

And then you think about all the environments where the way this person is would sentence them to isolation, bullying, unemployment, and other undesirable ends, because of their "bad social skills." And then you start to see how incredibly cruel and ridiculous those environments are, for being the way they are. And then you stop being careful. And you start being super pissed off.

Passing as Ethics: a primer

Passing as Ethics

So, passing as ethics is a term I invented and I use it a lot. It’s at the core of a lot of the stuff I write. In retrospect, I wish I had said “passing as functioning” or “passing as cure” because I think that would be more inclusive and cover more ground. Originally I thought that passing as ethics only happened to people with autism, but as I learned more I found out that it was more pervasive than I could ever have imagined.

Here are some passing as ethics values. I’m mostly writing this as if a professional is saying it, but disabled people can totally feel most of this stuff about themselves and I certainly did for a long time. I think it’s a very basic part of life for most people.

1. It is better for a person with a physical disability to walk without any visible mobility aids than it is to use a wheelchair, crutches, or cane--even if the person finds it painful or tiring to walk unaided, and/or is danger of falling.
2. If someone’s disability causes them to have an unusual gait, this is a problem, and it would be an improvement if their gait could be changed to look more normal, even if this didn’t make the person walk any faster or more easily.
3. Habits that mark someone as a person with an intellectual disability or autism, such as flapping hands, are inherently bad, and people who do them should be trained not to do them.
4. If there is a conflict between someone with autism and someone without autism, it’s the person with autism’s fault. If a person with autism gets bullied, this is evidence of why #3 is true; if no one had been able to tell they had autism, this wouldn’t have happened.
5. If someone misunderstands a person with autism, it is because the person with autism didn’t express themselves right.
6. Deaf and hard-of-hearing people should learn to lip-read. Hearing people need not learn sign language.
7. So basically, people with disabilities should always try to communicate in a way that is comfortable for people without disabilities, even if it makes the people with disabilities uncomfortable
8. To sum up, any habit, style of movement, facial expression, interest, feeling, word choice, way of pronouncing words, way of sitting, way of communicating, okay you get the idea, that is commonly associated with disabled people is
a. the opposite of success, and must be destroyed to improve someone’s “functioning”
b. morally wrong in some cases--that is, the person who is doing the behavior that’s associated with disability becomes automatically wrong in any conflict
9. If someone who used to look like they had a disability now doesn’t look like they have a disability (to most people), then they are recovered/cured (no matter how negatively it affects them to hide their disability, and no matter how many less visible aspects of their disability continue to affect them).
10. Don’t kill yourself after reading #1-9 because people will just think you killed yourself because it was so depressing to be disabled.

Finding it (well, sort of)

So I've read the piece Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help (which is a really great piece about how inclusion doesn't work if you always put the non-disabled students in the position of giving charity to disabled students, because they can't develop real friendships) and I realized maybe I should actually go to the domain it's at and see what kind of website it is. It's pretty great! It's a guy with CP and his wife, who do training and speaking about including people with disabilities at school work etc. And some other stuff.

So (I'm still on the same topic, you guys) there used to be this post at an "autistic" blog, which doesn't seem to be there anymore, and this post was saying something like, "I don't like when people compare the Deaf and autistic communities, because being Deaf vs. being deaf is about using sign language, so being Deaf instead of deaf is a decision, but there isn't a language that autistic people can decide to use and there aren't two ways of being autistic like being Deaf and deaf are two different ways of being deaf." I'm not naming the blog because I think I may be oversimplifying the post, and I don't want to attribute statements to them that they might not have said, or might no longer agree with since they apparently deleted the post.

But based on my reading of the post? I could not disagree more. My understanding of Deaf culture is very basic, but it seems parallel to Autistic culture for reasons I will discuss below. I don't use a capital A specifically to reference Deaf culture; but I think my reasons for using capital A are because I think there's a big difference between the identity I have now, and the identity (or non-identity) I used to have and the one some people still have.

For people with autism, it's not as simple as sign language vs. lip-reading and speech as a mode of communication. But it is the case, just like for deaf people historically, that lots of people with autism grow up with parents and professionals trying to teach them to communicate in a "normal" way, and just as it is often unpleasant and difficult for a deaf or hard-of-hearing person to have to communicate only through lip-reading and speaking, it is unpleasant and difficult for someone with autism to have to always express themselves exactly as someone without autism would, and understand exactly the things that someone without autism would. (Plus of course there are people in both groups who can't even reach the point that is deemed to be "success," even mediocre success. And those people, from that perspective, are just doomed.)

Here's a simple way of putting, in my mind, what constitutes the difference between being only a person with an autism spectrum disability, and being a person with ASD who is also Autistic.

I used to think of myself as being like a mosaic. I was very smart, I thought, so the mosaic was very complicated--the squares were getting smaller and smaller, and to most people, the mosaic looked like it was an ordinary picture. But it was really just a calculation, and there would always be things that looked a little too sharp or disjointed, parts of the image that required soft curved lines; so occasionally, my mosaic would fail as an image. It would get to be more and more like a real picture, but it would never get all the way there; if you zoomed in close enough there would always be squares.

When I thought of this, less than two years ago, I just thought it was an interesting way of explaining why some things were hard for me. It didn't occur to me how incredibly sad it was that I thought I wasn't a real picture.

Now I know that I'm a real picture, and I live as a real picture. As I've discussed, this is both more and less self-centered than the way I used to live. In one way, the things that I think are appealing and cool and smart, or the things that I'm naturally moved to do, now form the center of my experience in a way they didn't before. I make all my decisions as myself. However, this leads to a calmness and makes me more open to other people (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").

I could go into a bunch of detail about what "living as a real picture" looks like for me in real life, but that isn't really the point of what I'm saying. What I'm saying is that I imagine a person with autism choosing to live as a real picture (i.e. to be Autistic) is comparable to a deaf or hard-of-hearing person choosing to communicate primarily in a way that is comfortable for them, instead of in a way that is comfortable for other people and difficult for them (i.e. choosing to be Deaf).

To cycle way way way back, I have really enjoyed reading Norman Kunc and Emma van der Klift's website, because they are very smart, but one thing that struck me was Kunc's description of his childhood and adolescence. He went to various types of therapy where he was constantly encouraged to change the way he walked, talked, etc. As a teenager, he tried to keep track of and control situations (like eating and moving in front of people) so that his cerebral palsy would be less obvious. As a young adult, he suddenly realized that, as he puts it, "I had the right to be disabled."

I don't exactly want to say I think it's cool to read about Kunc's awful childhood experiences or deaf students historically being forbidden to use sign language, or the article I linked to a few days ago about someone with CP being forced to get a painful, useless operation because it might make her walk more normally--but there is something extremely powerful in seeing that passing as ethics and passing as cure have been used to hurt so many different people with such different disability experiences. I guess I can say it's sort of a relief. Parents and professionals who support passing as ethics/passing as cure for people with my disability will end up saying, "Oh well autism is different." They basically defend their obsession with passing on the basis that autism is a "social disability," or whatever.

And while I don't think that "autism is different," I think when I started figuring out passing as ethics, I thought I was almost the first person to start figuring out these things, and I thought it mainly related to autism and maybe intellectual disabilities. There's something really deep and lovely--they're not lovely facts, but it's a lovely feeling--about realizing how many different kinds of people have had to put up with this exact same thing, and that people have been fighting it for much longer than the twenty years Autistic culture has been around.

yeah so I want to use the r-word in a story I'm writing

and I'm going to use it in this post so be warned.

I'm not actually going to use it in the story I turn in to my workshop, because last time I turned in a draft of this story it was the most awful experience ever. Basically I wrote a story about a 12-year-old boy who goes to a behaviorist school for kids with autism (but no disability-related words are used in the story, because no one has outright told him he's disabled). The boy is obsessed with lions and with the idea that he's slowly turning into a lion and will grow up to be one; his parents and teachers try to discourage his interest. He also has a lot of meltdowns and the story ends with him having a violent, swearing meltdown at school and having all his lion paraphernalia taken away as punishment.

So, everyone in my class got exactly that out of the story. A disabled kid doesn't understand he's disabled and can't control himself. (Some of them also made comments that outright assumed I wasn't disabled.) What I turned in was a really rough draft but I felt really positive about the germ of the story, and I felt depressed because almost no one reacted to it or related to it at all.

I sent the story to some of my friends who are good on disability stuff and asked them what they made of it. They got out a lot of the things I was putting in: the main character is faced with adults who try to control him, while his non-disabled twin is more wholly nurtured and accepted; identifying with lions is a way of feeling powerful and dealing with the fact that he feels like he's not human. My friend Laura wrote, "it seemed like he loved this thing/lions and nobody understands that it's something to just love and so they try to make it out to be a problem and to use it to get him to behave how they want him to... i think it seemed like a lot of it was about behavior modification and the loneliness of being told to act a certain way when you're just not naturally inclined to."

Which made me love her so much. I know it's only a workshop, but I've been in workshops for years, you know, and I've never had one hurt before.

I'm trying to write a more clear-to-my-class version of the story and the way I'm doing that is by having most of the story take place when the main character, S., is 17. The point of doing this is that by this age he would be aware of his diagnosis and stuff (in the original draft, I was trying to show that he hadn't been told about his diagnosis, but still sensed how he was being treated; but I think people just took it as typical "disabled person doesn't understand" stuff). It is also cool though because I get to address some issues of passing as ethics and passing as cure. I'm having trouble writing the story because I want S. to express his resentment of the way he was treated when he was a kid, but he's very isolated and doesn't have a lot of people he can talk about those things to. And he's also not quite sure how he feels about a lot of it.

But anyway, S. has been in a mainstream school for four or five years, and his main activity is selling his medication and making drugs for people. (The story has some magic realism elements so he's invented his own drug.) He finds this comforting, probably because he has something that other people want; he frequently accepts little or no payment even when he could ask for a lot of money. It's just what he does.

S.'s parents don't know about this and see him as a success. S. realizes that his mom has started referring to him and his sister as "the twins" when she never referred to them as a unit before. There is some anxiety about how S. is going to apply to college because his years in special ed may make him look "unstable" or like he's not capable of doing college work. But overall he has a sense of finally being someone his parents can be proud of. He goes to a normal school, he looks normal, he acts normal (with the kids he gives drugs to, he's intentionally weird and cold, and they see him as a creep; but he sort of likes that, because he's controlling their view of him).

But he is, you know, pretty masochistic with the whole throwing away opportunities to make money thing. And he doesn't really have any friends.

He desperately misses his best friend from special ed, but his friend is on a completely different life trajectory; he's still quite visibly disabled and needs help doing things. S. has no idea of what a friendship between them would look like now that one of them is supposedly normal. When he runs into his old friend, he lies to his friend's staff about how they know each other.

S. meets up with the head of his old school, and is overwhelmed by memories of trying to bite her, having her analyze and remake the way he walked, having her snap at him and take away his lions--but she's completely friendly, as if they are family members or old neighbors. S. falls into compliance, finds himself following her lead, trying to make himself sound even more successful than she already thinks he is. Wants to ask her why she cared how he walked or what was wrong with lions, but those kinds of questions don't belong in her world. He feels stupid even thinking them.

S.'s twin R., who is in boarding school and isn't around much, is the only person he's really close to. She's always known him roughly the way he is and when she comes home for Christmas he manages to tell her some of the things he's thinking about.

Anyway, for some reason I have this scene in my head: S. makes some comment about how he now looks normal. R. says, thinking nothing of it, that he doesn't. S. is really offended and scared. R. says that S. doesn't look normal to her because he's her brother, he just looks like her brother. And besides, he always says he doesn't want people to like him anyway, so it doesn't matter if he looks normal, right?

"That's retarded," S. says. "That's a retarded thing to say."

Now, the reason I won't really put this in my story is because I think people in my class may just throw this word around in their lives without thinking of it as hate speech. And I want S. to use it as hate speech. I will explain.

I feel a very intense urge sometimes to use the word about myself. Usually in some kind of school or work situation where someone is patronizing me or has failed to understand the nature of what I can and can't do. The sentence I want to say comes in two forms:

"I'm not retarded," when someone is explaining something they think I don't understand. And, more commonly:

"Yeah, I'm retarded, sorry" (little laugh)

because when things are really hard and someone is obviously kind of annoyed with you or thinks you're lazy or lacking insight/knowledge about basic things, you just...hate yourself. And them. And you're supposed to say, "yeah, I'm sort of slow, sorry," "oh yeah I'm kind of a space cadet." Like it's something small, and cute.

But it's not fucking small.

The word retarded is the most vicious word I can think of to quietly and passively explain myself. The reason I find myself wanting to use it is because it feels almost on the level of physically hurting myself or the other person, which are things I do not believe in doing (well the first one happens sometimes). And it doesn't seem like such a big deal to most people to say that word. But to me it feels like punching myself in the head, and sometimes I want to feel that way.

from Ragged Edge Magazine May/June 1999

Playing Cards at Boston Children's Hospital by Lisa Blumberg was linked in a blog I was looking at and it's a really good and important piece. It made me really upset to read it.

It was striking to me how much I related as an Autistic person to the professional attitudes that Blumberg experienced, since she has cerebral palsy and no mind disabilities. I'm kind of leery about doing this because I don't want to give the impression of appropriating someone else's very different experience, but I want to quote some of the lines that really resonated with me:

Once Matty [her physical therapist] watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."

I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words...

When Blumberg was in her first year of college, a doctor spent months pressuring her and her mother to agree to a surgery that involved cutting into Blumberg's muscles, even though Blumberg really, really didn't want it. The doctor constantly told them that if she didn't get the surgery, her hips would dislocate by the time she was forty (then he kept lowering the age at which this would supposedly happen). As an adult, she found out that there was no way this would have happened before she was very old.

By Monday, after five days without movement, both my legs were sticks. I screamed when Matty touched them. She sat me up. I fell over. "You make me sick," I said to Pan later. That was obviously an understatement...Matty said I was being terrible to Dr. Pan. She said he knew I didn't like him.

Nine days after surgery, I went home and that was when the fun really began. There was a problem with pain management. The problem was that Pan was not interested. He said his concern was with correcting my leg, not with how I felt while he was doing it. Both my legs now hurt everywhere, but he had only cut one muscle on one leg, so I could not blame all this on him, no indeed. Anyway, I was just faking.

... Throughout July and August, while the pain turned into aches, I had therapy. My hamstrings and some of my hip muscles were doing weird things. I couldn't straighten out my legs the way I used to. My left leg--the leg that was supposed to be untouched--was turning in.

At first Matty pretended things had been this way all along but then finally said, "When you cut a muscle, every other muscle reacts. When you do something to one leg, the other changes."

No one had told me. I had not been playing with a full deck.

"Why did he do it?" I screamed.

"If you don't take risks, you don't do anything," Matty said crossly. "It's not like you had a great walk to begin with."

So it was spoken, so it was said. I had a disability to begin with. It was all right for other people to take risks with me.

...By 1979 I had oozed into the disability rights movement and for the first time met other adults with disabilities. Many of these people had been "treated" at a local pediatric orthopedic hospital I'll call Newcastle, since this article really isn't about Newcastle. The first thing I heard about was the amphitheater where the kids were examined in front of students and whoever. This was a new one on me.

Then I heard about the surgery--lots of it. As someone said, "surgery was all there was." Three, five, seven, eighteen operations on one person. Sometimes one surgery would be successful and then, well, the next one would be sort of a mistake.

I asked Bette what the hell was going on. She said that kids at Newcastle were looked at from an orthopedic perspective but did not necessarily get rehab. For kids who had lasting disabilities rather than, say, a club foot, that was a problem. People did not understand that. Even most primary physicians did not recognize this...It occurred to me that if your focus is on a fix, working with individuals with lifelong disabilities must be aggravating--aggravating enough to make you swear or become a gambling man.

(emphasis mine)

how an autism spectrum disability affects my life now

[the video hasn't processed yet, if it doesn't make it onto youtube I'm going to plotz though.
FUCK YEAH SEAKING IT'S PROCESSING
score

]

Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.

Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.

Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.

Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.

Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.

Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...

It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.

Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.

I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.

But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.

Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.

Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.

Social Skills Don't Exist

An exploration of the concept of social skills, particularly (but not exclusively) as it relates to people with autism, victim-blaming, and the Power of Love:

1. What are social skills?
2. What this is not

Showing likability and connection, and skill and work, that is unrelated to being normal:

3. About Stephen
4. Social skills and intent
5. Is going to a hospital normal?
6. Mindfulness and modulation (a general look)

7. Break for love

Some more on skill/work/compassion:

8. Mindfulness and modulation (cashiering)
9. Mindfulness and modulation (being practiced, and not practiced, by professionals)

Other things on various subjects:

10. a note on a
10a. input vs. output
11. My year of flops
12. Bird brains

13. Social model of social failure

Autistics Speaking Day post

The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:

One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."

"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.

This kind of attitude from parents and professionals makes me want to scream.

I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.

A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.

People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:

1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."

2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.

3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.

4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.

5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.

6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.

then I got excited

after I made that post and didn't do my homework, because I was thinking how cool it would be to do a project collecting writing/talking from people with ASD who pass or have passed

some areas of LOOK HOW SUPER COOL THIS WOULD BE:

insecurities about stimming/gait etc. Or other things, like speech, or intensity, that people think will give them away
opting out of initiating things, getting too close to people, going into certain environments, because of a fear of getting into a situation where you won't be able to pass
covering rather than/in addition to passing. Passing to avoid covering.
being put in a position of assumed normalcy in relation to people with disabilities and/or mental illnesses--special ed teacher or staff person, student in a psych class, psychiatrist, parent of a disabled child, sibling of a more "visibly" disabled or ill person
intersections of unread ASD with other identities that aren't always read, and/or that the person consciously hides or covers (including ethnicity, class, being same-sex-attracted or trans, other illnesses or disabilities)
intersections of unread ASD with identities that are obvious to everyone (basically everything I just listed can also be "visible")
people who feel disconnected/unreal because of passing, or feel their relationships are damaged by their passing
people who are not read as ASD, but are read in some other negative way instead
decisions to stop passing, how they are made and their affects. Or, people who stop passing and feel they can't help it or don't really have a choice
having people tell you that your ASD isn't real or significant, because of the way you look or speak

anything else?

stuff to say in class

(I used to be joking when I said that and now I'm not, which is an exciting change.)

of course more of an effort needs to be made to include girls with ASD in studies at an equal rate to boys and study differences in presentation and even do all-girls studies

however, I think this is not just because we need to study what ASD is like in girls, but because we need to question commonly accepted values about how to "treat" children with ASD.

the focus is generally not just on communication and other objective skills, but on normalization of behavior, but not a ton of analysis is done on why for example preventing neologisms, preventing stimming, and training eye contact are supposed to be inherently good. But when we think about the fact that (anecdotal but very consistent evidence from professionals, parents, and people with ASD) women and girls with ASD are much more likely to pass for non-disabled, or at least be less apparently/stereotypically ASD than their male counterparts...we actually already have a bunch of passing/semi-passing ASD people to study. We can actually look at these people and see what their quality of life is.

Again from anecdotal but consistent evidence, women with ASD are more likely than men with ASD to have severe anxiety problems. I think at least one study showed that we are less likely to be married. And when you actually think about this stuff logically and not from the standard "non-disabled people>>>>everyone else forever" perspective, it makes perfect sense. Behavior is not who you really are. Focusing super hard on behaving like someone else can cause anxiety and exhaustion. Being impaired and having other people not notice that/make allowances for it, because you pass so well, can also suck. If you are behaving like someone else, you may number one fall into the uncanny valley, and number two be unable to feel things very deeply/experience real connection.

I mean, to me this is common sense and people should already be questioning "non-disabled people>>>>everyone else forever," but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.

high-functioning is dumb take one

in other news, I continue to hate the term "high-functioning" so much that I want to start some sort of google-bombing project or something so the first result for high-functioning is an explanation of what a dumb thing it is to call someone. I'm going to try to make a really short, simple list of reasons why it is such an insulting and inefficient term.

1. people who are labeled "high-functioning" are still disabled and therefore less "high-functioning" than people who aren't disabled. But referring to someone as high-functioning can cause the conscious or unconscious impression that the person's disability isn't significant or real.

2. describing a person's disability by comparing it to other people's disabilities is kind of messed up. If some people are "high-functioning," then other people are "low-functioning," which I think is a terrible way to describe a person. It makes it sound like the person contributes nothing to the world. But even setting aside how insulting these terms are to severely disabled people, describing mildly/moderately disabled people by saying basically "they're not like severely disabled people" does the same thing as #1--it encourages people to think that a mild disability shouldn't be taken seriously, because the disability is constantly being described in terms of "well it's not as bad as something else."

3. "high-functioning" and "low-functioning" are terms that are ridiculously broad. They imply that if someone is bad at one thing, they are bad at everything, and vice versa. A person ends up being labeled as hf or lf based on just a few things about them. And when (as is often the case) someone is labeled "high-functioning" based on the fact that they are a fluent speaker, or they can pass for someone without a disability, that feeds the already too prevalent belief that being able to speak, or being able to pass, is the same as being successful. This hurts speaking/passing people because our problems are ignored; and it hurts nonspeaking/nonpassing people because they end up receiving services that are way too overfocused on trying to get the person to speak or pass, instead of trying to promote independence, happiness, and communication in ways that are most immediately achievable to the person.

4. "high-functioning" is a term that is ridiculously broadly applied. Since most people who speak are labeled as high-functioning, it's a completely meaningless label that can cover, for example, a person who receives a lot of support in living and has a supported employment job, all the way to a person who lives independently, has a competitive employment job, and has never received any services for their disability.

5. and--most obvious to me, but I never hear people say this--it has always struck me that there is no widely used term "middle-functioning" or "moderate-functioning" (I know those terms are used, but not commonly). But there can't be just two kinds of people with Down Syndrome, or two kinds of people with autism. If you must divide people up by their ability level, you've still got to admit there are more than two ability levels in every disability.

SO WHAT SHOULD I SAY INSTEAD????

Well, if you really have to divide disabled people up and compare us to each other--which I admit is sometimes necessary, for example when you are thinking about who needs what services, or if you are having a discussion about passing/speaking privilege--I think it is better to say mildly, moderately, severely, and profoundly disabled. Now I still think this is super blurry because again not everyone is at the same ability level for different things, but at least there are four options to choose from instead of just two, and at least the terms don't sound as ridiculously weighty and pervasive as high-functioning and low-functioning. "Mildly disabled" still has the word disabled in it so it doesn't imply that the person's life is awesome and easy. "Profoundly disabled" also has the word disabled in it so it makes it clear that the person's disability is all that is being talked about--it doesn't imply that the entire person, their soul, is "low-functioning." (Also, although I know this is silly, I enjoy using the word "profound" to describe people who are so often devalued.)

However, also try to avoid dividing disabled people up with these fuzzy terms at all. A lot of the time when people are running around saying "high-functioning" or "low-functioning" it would be a lot easier to say the person is good at math, or nonverbal, or something. You can best serve and support a person when you think very specifically about what their abilities are, instead of trying to categorize them in such a general way.

Yeah so I'm serious about wanting to google-bomb this and I would appreciate people's suggestions about what to add and subtract.

Some screwing around about person-first language (written June 18 to July 30)

I know these posts are probably boring to everyone but me, especially because I never come to any real conclusion. I just like thinking about language more than I like doing almost anything else. In practice, I generally use person-first language, but that's for various reasons not worth talking about (especially because I talk about those reasons a lot anyway). However, I was thinking a lot and I feel like, at least when I look at it in theory, person-first language is kind of painful for someone like me.

Just kidding, I am going to talk about what I do in practice. Being called "autistic" or calling other people "autistic" makes me uncomfortable and so I don't do it, but that's very specific stuff about the word autistic and how it feeds into cultural connotations about ASD that make me incredibly upset. However, although I guess I don't have much occasion to identify myself as just disabled (and when I do it's to pretentious social justice people, so I throw the term PWD around because they like acronyms) there is this really nice place in my head that goes "I'm a disabled person, I'm a disabled person" and it's seriously just one of the nicest-feeling phrases in the world. I like the word disabled, it looks soft, and it fits me neatly, and I enjoy the part of me that just feels like "a disabled person" and not "autistic" or "a person with autism" which isn't that great either, or "a person with a disability" or "a person living with a disability"--like how far away from me can you get it, is my question? "Amanda is a human being who is currently at this moment in time making her way around the planet with, um, a disability." Oh boy! Poor Amanda!

Poor Amanda indeed. I certainly feel like Poor Amanda at school sometimes because it hits all my energy drains--planning tasks/transitioning/starting tasks, looking normal, and putting enunciation and loudness (two things that are somewhat painful) together with lots of words that are appropriate in style for what's going on. Also recently there have been really good times like taking a class where the professor insults people with your disability, and the TA gives examples of what people with your disability are like (I know this doesn't sound bad but it makes me feel sick), and then in your other class someone writes a story about their sibling with your disability basically acting like their sibling is some sort of tornado instead of a twelve-year-old person. All of this stuff made me spend last term with an ever-expanding belief that I had schizophrenia, anemia, multiple sclerosis, and lots of other illnesses that I would look up on Wikipedia--I had gotten to a point of being extremely exhausted all the time and having such an immense amount of trouble making decisions and tolerating small amounts of stress that it was hard for me to do anything.

***

Sometimes I have a running mental conversation with myself about how to describe autism to people if I have to disclose. A recent one goes: "Autism is like being born with a giant pile of shit on your face, and at first you don't realize it's there, but eventually you do and you start washing it off, but even after you wash it off you can still smell it and other people can smell it too but they don't always know what it is they're smelling but they know it's bad."

***

My current job is the opposite because it avoids all my energy drains. I am working at a summer camp where we have to follow a strict schedule. I am never just drifting in time. All the campers have developmental disabilities and our focus is on relating and engaging with them, not on looking normal. Talking in a complicated-sounding way is not seen as valuable at all.

***

It's funny because what I don't like about the way some professionals and laypeople use the term "autistic children" (or autistic something elses, but mostly children) is that they act like autism is about a preference and a decision to disengage from other people because you aren't interested. Or to be violent or something because you don't care about other people's feelings or are selfish or mean. However, what I'm saying about "person with a disability" is actually a somewhat analogous characterization--because saying that people with autism aren't interested in other people, and that's why they don't look at them, implies that everyone can look at other people if they just work hard enough, and so on and so forth. It places the entire burden of managing autism on the person with autism. You can be a good autistic person--that is, a person with autism, who keeps their autism in a place where no one can see it. Or you can be a bad person, which is to say an autistic person, who is selfish and disruptive because they express their feelings, don't hide stimming, don't force eye contact, and so on.

***

In my creepy disability studies class that I dropped, someone did say something sort of good--they said something about the burden that disabled people get saddled with to educate other people about disability, and the unfairness of it when the disabled person has a disability that makes it impossible for them to fulfill that role.

That resonates. Sometimes I have the spoons to be a person with autism--a person who has autism like I have a backpack or a phone. I can leave my backpack in my room when I go to the mailbox. Some people see me walking around in the winter when I can carry my wallet and keys in my jacket pocket, and they don't know that I'm a person with a backpack. And my greatest problem, I guess, is just that if I say "I have a backpack" people might not believe me, because I don't look like someone who has a backpack.

If I am visibly disabled, or even do things that might not even be read as markers of disability but I know that's what they are, or if I just straight out mention it, I fear becoming disabled/autistic instead of A Person With because the truth is people do perceive you as lesser if your disability can't be contained. I have a feeling that they will become ethically better than me in all situations thanks to PAE, or just that they will always think they're going over my head. But I can't avoid that forever. I can't really be A Person With--A Person Who Has--because having something implies ownership and competence and sometimes those aren't things that I have in great enough supply that I can just treat autism like a possession. Sometimes I drop my thermos of autism and spill it all over myself.

***

In my current environment, the disability has been moved to the front. I'm a disabled person. Instead of a regular person handling something, I'm just a different kind of person. It's funny because I feel that at this job, my disability is an asset. I certainly don't understand everything that all other disabled people feel and experience, but I am pretty familiar with sensory issues, trouble communicating and making decisions, not looking at people, being under- or over-affectionate, and so on. It's not something I have to read about, I can just relate to it and I respect it easily. So right now it's nice to be a disabled person, but when I have to send the disability away from myself it turns into shit.