Monthly Archives: May 2008

Students vote boy out of class

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Edited to add: Please go to Bev’s blog if you want more information on how to try to get them to put a stop to this crap.

PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher said they were going to take a vote, Barton said.

By a 14 to 2 margin, the class voted him out of the class.

Barton said her son is in the process of being diagnosed with Aspberger’s, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully.

Read the entire story here.

This reminds me forcefully of a warning that Laura Hershey gave a long time ago in her “Crip Commentary” web column, after viewing the series “Survivor” on television.

She went on to write “Survivor” Promotes Ideology of Exclusion:

In the midst of these escalating social conflicts, there now appears a game show — mere harmless entertainment. It’s fun, gossipy — so we don’t question its underlying principles. But the rules of this “game” seem designed not just to reward the winners — that’s an expected part of any game — but especially to punish the losers.

Somehow, I realized, this game seemed eerily familiar to me. I remember exercises I participated in during adolescence — several times at church youth camp, once in a high school class — called “values clarification.” This involved a group discussion about making difficult choices in some hypothetical adverse situation. As I recall, these exercises were supposedly intended to help us understand our own beliefs. That sounds benign, even enlightened. But in reality, I remember I often felt deeply troubled not only by the outcomes of these discussions, but also by their instigation.

A typical example: My peers and I were told to imagine being stranded on a lifeboat, along with an assortment of strangers and a dwindling supply of food and water. Our companions on the boat included a young pregnant woman, a surgeon, an unemployed drifter, an elderly man, a Boy Scout, a woman with cancer, and so on. The setting and the cast of characters varied, but the basic idea was that some people would make it, and some people wouldn’t — and that it was up to us to decide, based on what we thought of the relative value of each fictitious person.

I never had much to say during these discussions. When they were over, I often had a queasy feeling that stayed with me for several days. I never fully understood why, until much later, as an adult. I gradually came to understand that these so-called “values clarification” exercises were based on a preordained set of values, which I could not accept. The games assumed that there weren’t enough resources to go around; and that some people have more value, more right to live and to consume resources, than others do.

I remember the same queasy feeling when watching the show “The Weakest Link” — which functions like an ultra-crisp, ultra-efficient version of “Survivor”. People are voted off each round, and when they are they are told, “You are the weakest link — goodbye.” It’s like a distilled essence of social darwinism. And people seem to love it.

And people seem to learn it practically from the cradle, unless it’s just some kind of awful misguided instinct. The following will be familiar to nearly any autistic person who wasn’t extremely lucky. I’m only picking from my life because it’s easier to remember my own observations than someone else’s.

I can remember being near the age this kid was, and walking onto a playground at school. There seemed to be a lot of fascinating things to climb, so I tried. And was promptly grabbed from all sides and shoved off the structure, to repeated cries of “Amanda’s on the ship!” If I by chance (because I don’t know how else it would’ve happened at the time) drifted into one of the lines that the other girls were always forming — “Anyone who wants to play My Little Ponies, line up!” and so forth — I heard an emphatic and smug “You can’t play”. And I also remember the first kid among this same group of kids who seemed to be nice to me — who was then marched in front of me by another kid and told to repeat, “I don’t like you” to me. She did. That was the end of that. If the words to any of these things were a mystery to me (and all but a tiny number were), the tone of nastiness and exclusion was unmistakable and it happened without fail when I ended up in the path of groups of kids.

And I remember as well that when I was bullied so mercilessly — at an age where I understood far better what was happening — that I was afraid to go to school and lashed out defensively at nearly anyone who tried to interact with me at all, I was the one who got counseling, and I was the one who was talked about by teachers as if there was something wrong with me. And I was the one who had to repeat a grade and change schools. The bullies were left to go on doing their thing, because it was only natural to be nasty and cruel, but wholly unnatural to be terrified of people who acted in this manner. I’m not saying I never did anything wrong, nor that I treated everyone with absolute kindness. Not even close, and I imagine at times I was a nightmare to deal with in my own right. But good grief.

I also remember thinking that I’d finally escaped all that, in my ill-fated attempt at high school. Even years later, I thought that while people had certainly said nasty things to me, I’d gotten off light. Then as an adult I got in touch with James, who’d been one of the kids who was more likely to hang around with me at the time, and who apparently got his own share of grief for even doing that. He told me that he’d been bullied pretty badly in junior high, but that he hadn’t seen much like what I got in high school, including the fact that even some of the teachers were in on it.

(And yes, teachers were in on some of this stuff throughout school. In one memorable instance a teacher who frequently found new and creative ways to humiliate me so the other kids would laugh, actually wrote home to my parents about my great “sense of humor” — which seemed to actually mean, that he enjoyed laughing and getting others to laugh at my expense. Others, like a particular gym teacher, were more into physical rather than emotional violence. Some teachers were okay, but some of them seemed outright sadistic. A shocking number of autistic people I know, me included, have had teachers or other authority figures ask everyone in the room to tell us everything they hate about us.)

I wrote in a previous post about some of the long-term effects of things like this, and I noted the following:

I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?

I still want to know this.

I also want to know what on earth it means that it’s considered “good social skills” to learn to be one of the people that excludes. And autistic and non-autistic people alike can eventually learn to be that, even if we weren’t much like that to begin with. I’m not trying to say we can’t, I’m not going to pretend not to notice what happens to autistic people who gain the power to become exclusive. But it’s sheer ugliness that these horrible things are treated as normal, and being the target of them makes you seen as somehow worse than the people doing the targeting. And the people doing the targeting are seen as the ones to emulate, it seems like.

It was also an ugly truth to realize that while some people grow out of it, many people who begin as bullies grow up to remain bullies. I fully realized that when a parent of an autistic kid called my friend a “retard” when he was mad at her, then later went on to say that he always tells his son to quit acting like a “retard”. I imagine that if he’d gone to school with me or my friend he’d have done worse than name-calling. (This is also reason #4285 why I don’t believe that “special children are given to special parents” nonsense.) It wasn’t the first time I’d seen an adult be hateful by any means, but it was the first time I connected the adults to the children in my head.

Daniel Mont wrote a book, A Different Kind of Boy. It was about his autistic son Alex. Daniel wanted to put Alex in a gifted program, because Alex was ahead in many areas and he read literature suggesting that Alex’s social and perceptual differences might actually be partly the consequence of intellectual differences. There’s an entire chapter on it that everyone should read. Alex took an IQ test and met all the requirements for the program. Then he went to one meeting of it. The other children, who were regarded as perfect and exquisitely sensitive, decided, apparently, that they didn’t want Alex around. The parents backed them up completely:

“You mean, you’re not letting Alex join?” I was incredulous. “He passed your IQ test.”

“Yes, but the other children feel he really isn’t one of them. Do you konw what I mean? I’m sure there are other programs he can sign up for. We’re sorry, we feel bad because you and Nanette were so nice.”

“Well, what did he do?” I fought to restrain my anger.

“I’m sorry, Mr. Mont. Our decision is final. We really have to trust our children on this.”

I hung up the phone. I was furious. Absolutely furious. What kind of monsters were these people raising, anyway? “They are not like us. We can tell if he belongs.”

And at that point he realized the elitism that runs through most such programs (all that I’ve seen anyway, and not just intellectual elitism either — the gifted programs I was a part of were mostly populated by middle-class or wealthy white kids, most of whom wouldn’t have been put there were we anything else), and the disturbing nature of the assumption that the children were the ones best able to make the decisions in this matter.

I have read in the past about schools in some places — most American schools are not like this — where children work together to solve problems, and where the kids who learn faster in any particular area, instead of being separated out and told they’re special and above everyone else, end up being taught to use their talents to cooperate with the other children. “Winning” or “getting ahead” isn’t the goal there — and all the children tend to learn more than they do in the more cut-throat style of schools. If schools have to exist that sounds like a much better set of principles to run them on.

As I mentioned in my other post — my brother was, as he describes it, the “town scapegoat” in the small town I was born in. People sometimes think he’s exaggerating to say that everyone hated him there, just like they sometimes say my friend Joel and I exaggerate when we say teachers joined in with some of the other kids’ bullying towards us. From what our parents say, if he’s exaggerating it’s not by much.

Oddizm claims that autistic people are “eminently hate-able”.

I don’t think we are. But I think that we are, like many other disabled people, subject to widespread hate. And that the hate often wears a lot of other masks — but is, basically, hate, in all its guises.

And hate in some of its most raw guises is what autistic people encounter in kindergarten.

If schools are going to exist and teachers are going to teach in them (and I’m not a big fan of schools, but I know to say they’re widespread is an understatement), they ought to discourage hate and exclusion. As should parents.

They ought not to join in.

And they sure as hell ought not to outright invite it and celebrate it the way this teacher has.

If this were the way things were done, then anyone who was the wrong kind of “different” of the day — autistic or non-autistic — would be voted out of every kindergarten where prejudice against people like us existed. I would’ve been “voted out” in preschool, and the kids were doing their darnedest to try even without a teacher’s encouragement.

Children aren’t born knowing how to behave towards other children. None of them are, autistic or non-autistic. They have to learn that everyone’s dependent on everyone else, that people aren’t better than others just by being better at something, and that tendencies to do bad things to other people are things we all have to fight, not give in to, if we want society to be remotely just to anyone.

And this teacher is leading these kids in the wrong direction to learn any of those lessons.

They should do all assistive technology this way.

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I just finally got my resized ring splints (finger splints), and they don’t look like splints at all. Several people online have asked me to show them and talk about what they’re like in case they or their kids need them, so I’m including pictures and discussing them and their use here.

Here’s the view from the back of my hands, where they look like rings:

Fingers with silver ring splints

And here’s the view from the palms of my hands, where you can see how they connect together:

Silver ring splints on hands palm side out

What’s the point of this?

Among other things, handwriting can often be difficult for people who have joint hypermobility. (Here’s the webpage of the hypermobility syndrome association.) That’s when joints bend further than they normally do. The most common cause is benign joint hypermobility syndrome (my diagnosis) which is extremely common, especially among women, and it runs in my family. But there are also several rarer syndromes like Marfan’s and Ehlers-Danlos that have it as one of their traits (and there’s some debate as to whether BJHS is a very mild version of one of those or something separate). A lot of people don’t know they have it unless they have an extremely severe form, although even some people with the rarer and more severe problems don’t get diagnosed easily. There’s a fairly easy way to test yourself to see if you should get checked out for it, which is this test (in which I get either a 7 or 8 out of 9 — but be aware it’s possible to do it wrong if you have perceptual problems, the first time I saw such a test I thought I scored lower than a doctor and PT scored me as; also be aware that if you have various other symptoms (especially widespread joint pain or dislocations), or if a close relative does, you can still sometimes be diagnosed with BJHS with a score between 1 and 3, so best to check with someone who knows what they’re doing.

I don’t know if it’s true or not that autistic people are more likely to have loose joints like this. Tony Attwood claims it is (note that when he says “Asperger’s” he’s often including examples of other autistic people without that label):

One of the movement disturbances associated with Asperger’s syndrome is lax joints (Tantam, Evered and Hersov 1990). We do not know if this is a structural abnormality or due to low muscle tone, but the autobiography of David Miedzianik describes how:

At infant school I can seem to remember playing a lot of games and them learning us to write. They used to tell me off a lot for holding my pen wrong at infant and primary school. I still don’t hold my pen very good to this day, so my handwriting has never been good. I think a lot of the reason why I hold my pen badly is that the joints of my finger tips are double jointed and I can bend my fingers right back. (Miedzianik 1986, p. 4)

Should problems occur from lax joints or immature or unusual grasp, then the child may be referred to an occupational therapist or physiotherapist for assessment and remedial activities. This should be a priority with a young child, since so much school work requires the use of a pencil or pen.

(That’s from page 263 of The Complete Guide to Asperger’s Syndrome by Tony Attwood.)

So, I’d always thought I was “just” dysgraphic in school. I was always having my grip corrected and my only way to produce neat handwriting was to eventually learn to ignore severe pain in my hand. I had one set of people try to help me grip it better in elementary school, and another set of people while I was in college, but nobody did an assessment of my flexibility levels. Then after diagnosis with hypermobility last year, all this stuff started to make sense.

So, what these splints do, is they make it impossible for joints to hyperextend (extend beyond their normal limits), or at least to do so very much. Here’s my finger being bent without a splint:

finger bending backwards at tip and middle knuckle

And here’s the same finger being bent with the same amount of force, but with a splint:

Finger being pressed on with a splint on but not bending

You can see that in one picture the joint bends backwards a lot and in the other one it doesn’t.

This also makes a difference in handwriting. Here’s one of my versions of a grip on a pen without a splint (sometimes I use 3 fingers to stabilize things, sometimes 2, but same result):

Holding a pen without splint with fingertips bent back

It hurts just to hold a pen like that for less than a minute.

And here’s my grip on a pen with the splint:

Gripping pen with splints on

So there’s a big difference there.

And the difference it’s making for me is less pain while handwriting, less pain while typing, less pain in general. The actual bending itself doesn’t directly cause the pain. What does cause pain is the constantly having to press harder and further on everything because if I press more lightly my fingers just bend back instead of accomplishing whatever they’re supposed to accomplish. (This is why people with hypermobile fingers are usually slower at playing certain musical instruments, there’s a finite rate at which we can press because it takes us longer.) And having them bent backwards like that in the long term doesn’t do any favors to my joints either.

Which is why I’d say, if your kid is having trouble with handwriting, please get them checked for this. I’ve talked to way too many people who are parents, or who know parents, with kids with handwriting problems, and I ask if the kids are super-flexible, and they say yes. But they rarely connect the two on their own, and neither do the schools.

I wish I’d had them when I was seven years old and struggling to handwrite only to be accused of not trying when my hand gave out, and having even my odd (they called it ‘immature’) grip seen as a behavioral problem rather than a physical one. I really believed that ‘not trying’ thing, too, since I had no sense of what was and wasn’t normal pain-wise. So I eventually learned to ‘try’, which meant, mask pain to the best of my ability and keep writing, and I finally got neat handwriting five or six years later (and in fact got so skilled I could write in several different handwritings, forwards and backwards, because of how hard I was working). But that hasn’t entirely lasted as I’ve gotten more body awareness than I used to have, as well as more of a sense of how much pain is too much to ignore.

When I tried handwriting in the occupational therapist’s office today, I kept waiting for the pain and it didn’t happen. I’m not sure thumb-related pain will fully go away (see below), but I didn’t experience it today. And I certainly didn’t experience the general hand pain I normally do that probably comes from stress on the things that do all the moving things in the joints (I don’t know all the words for these things).

Here are the splints off my fingers by the way:

a thumb splint and two different kinds of finger splints

The big one with the chain attached is a thumb splint. The other two are two kinds of finger splints: One to prevent mild-moderate hyperextension and the other — the one with the little round spacer thing in between the two rings — to prevent severe hyperextension. I’ve got the mild-moderate ones on my pinkies and middle fingers, and the severe ones on my pointer and ring fingers.

The one thing the occupational therapist said these things could not do, is fully stabilize the base of my thumbs, or stabilize at all the base of my pointer fingers, which are my two loosest sets of fingers. She said it’s just not capable of that level of support and I’ll have to try something else if I want more support than I’ve got on those.

I’ve also got less pain typing. Normally there’s a sort of sharp pain that starts in my wrists or hands and shoots into my fingers, very similar to what walking without ankle braces does to my legs. And that’s gone as well as far as I can tell.

Anyway, what I was thinking when I got these, is they should do all assistive technology this way. These aren’t just functional, they’re also pretty. (And for people who can afford it, they even make versions with stones set in them and stuff.) A lot of assistive technology gets hung up on looking like it crawled out of a hospital or something. These splints are taken by most people as just jewelry. (I’ve been wearing the pinky ones for a month now while waiting for the rest to be resized.) My mom said when I got these I’d end up looking like a hippie, but oh well, it wouldn’t be the first time. :)

I know there’s been some progress in making other assistive technology attractive, but it hasn’t come as far as these splints have for the most part.

(To find people who make splints like these, there’s Silver Ring Splints in America and Silver Splints in Scandinavia, the Netherlands, and apparently the rest of Europe too. There’s also a plastic kind that are cheaper but also less comfortable and don’t fit as well, and then another plastic kind that’s custom-made that I saw on a mother’s blog for a hypermobile kid who had cute little multicolored and obviously customized plastic ones. I’ve also heard that you can replace the bracelets that hold the thumb splints on with your own custom ones, so I’m thinking about doing that. Also, many of these companies will also make them in gold if you’re allergic to silver.)

The interesting thing to me, also, is that assistive technology likely to be used by non-disabled people (which is to say, most assistive technology, of the sort that isn’t normally singled out as assistive even though it is) is often already made with aesthetic considerations in mind, whereas assistive technology for disabled people (the kind that is normally singled out as assistive) generally isn’t. Since, of course, assistive technology primarily used by non-disabled people isn’t singled out as medical, and since, of course, medical seems to mean uncomfortable and ugly a lot of the time when it comes to equipment.

And, basically, if you have the means to get any splint that works this way for you or someone you know who needs it, you should try. It has been worth both the wait (since February, and a longer wait than usual because I had to send most of them back to the company for resizing) and the hassle. I’ve been letting anyone know who seems to have hypermobile joints (which is a lot of women I run into and a few guys, including a staff person who described getting out of class in high school by popping his thumb out and claiming it was broken), almost all have been interested, and almost none have ever heard of this as a potential cause for their joint problems or handwriting problems. Same with parents I talk to whose kids have this problem, they’ve often never heard of it (or of any solutions for it) even if the school is kicking up a major fuss over things like handwriting and even if the kid is really obviously flexible. So anyone who might run into someone in this situation, keep that in the back of your head, because doing something about it can save a lot of headaches (or, I guess, hand-aches).

And technical problems…

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Right now I’m stuck in a linux console until a bunch of upgrades take place. I can’t decipher these WordPress dashboards when I’m in this text-based web browser. So I don’t dare try to moderate comments, because I think I’d probably get the wrong ones so we could all read about penis enlargement instead of the things we actually talk about here. My system’s fine, it’s just a pain in the butt to upgrade sometimes. Now I’ve got to go find the “publish” button in this wall of plaintext crud. Argh.

Why comments might not appear. And some notes on asking for stuff. And some apologies. And a new website.

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(Edited to add: If anyone can direct this woman and her daughter to resources to deal with the situation described in that post, it’d be really helpful. I’m passing it on because I don’t know about these things, at least not right now at 2:30 in the morning, but I’m guessing others do.)

I just pissed off Larry Arnold about “deleting” comments he made that I’d never actually seen. But I figured out the problem, they were in my spam filter. Problem solved. But I figured I should post this in case it happened to anyone else. (Edited to add: I just checked — I found a whole bunch more posts sitting around in my spam filter, and have de-spammed them as well. This is way clearly nothing personal, the thing is just acting up too much.)

Just to reiterate something I said recently before:

Be aware that my spam filters often mess up and throw things in the spam bin that are actually legitimate comments (this happens most often to Andrea Shettle for some reason, to the point where I search all spam for her name before deleting it). So you might want to keep a copy of your comment just in case.

I just searched on that person’s name in my spam filter, and found the comments.

Please note: If I’d deleted the comments, I wouldn’t have been able to find them in my spam filter. Deleted comments disappear entirely.

If I do delete a comment it’s either because:

1. It violates my comment policy. (Which isn’t about agreeing or disagreeing with me, as you can tell by what I let through. However, I don’t allow hurtful gossip, and I don’t allow attempts to derail self-advocacy efforts by saying people aren’t autistic, or aren’t the kind of autistic people who matter, or, by virtue of being autistic, are clueless.)

2. It contains private information.

3. I misclicked (the new WordPress dashboard makes it really, really easy to do that — instead of having checkboxes where I can click next to the ones I want deleted, then the ones I want to keep, etc, and then click something at the bottom of the page, there are little links on each comment now for approve, spam, delete, etc., and if I click “delete” by mistake, it’s gone forever).

If there are things from awhile ago that seem to violate my policy, that’s because the policy wasn’t always there. If there are things from now that seem to violate my policy, it’s probably because I don’t always read through comments very thoroughly before approving them. (And that “don’t” should really be “can’t”, or else I’d never find the time to approve them all.)

As I said before, if you’re attached to a comment, keep another copy. And also, don’t assume the worst if something doesn’t appear. I just got through a month’s worth of backlogged approving comments elsewhere, and a lot of them were people posting the same thing over and over and then sometimes going “You didn’t post my comment, that must be because __________”. No, seriously, I just didn’t get to it until now.

I’ve got 3172 comments in my spam filter right now. If some of them are yours, I’m truly sorry about the problems. I just don’t know a better way to handle the enormous volume of comment spam I get. Please keep copies of any comments you’re particularly attached to, and email me (my blog address with an @ after the first word instead of a dot) if they’re not getting through. I’ll try to find them in the spam filter through a search.

I do clear the spam filter from time to time though, and then there’s no going back unless someone posts the comment again.

Please also be aware I’m not in a position to answer all my emails, do everything I’m supposed to be doing, etc. I’m behind on that already. I’ve got a lot of stuff going on in real life right now. I’m not doing a tenth of what I should be, and I haven’t been as political as I’ve wanted to be lately. But I’m doing what I can, and I tend to assume that I’m not the only advocate out there and that other people are doing things when I can’t be doing them. Frankly I think I need to hang out in more political discussions than I have been lately, because I find that often it’s the environment that allows me to do, or not do, something.

At the same time… since I’ve gotten back online more thoroughly, I’ve been hit with a massive amount of requests, demands, questions, queries, etc. Many of them assume that I’ve stored knowledge I haven’t stored, know things I don’t know, remember things I don’t remember, and can do things I can’t do. I feel bad about it, because a lot of the things being requested, demanded, etc., are worth doing. But at the same time, feeling bad about it doesn’t exactly help anything. I’ve tried to do as much as I can, when I’ve been able to do it.

Just be aware that when you write to me about one thing, I’m also likely getting emails, phone calls, and a whole lot of other things, about a lot of other things. Some recent examples:

  • A person who worked at a school for autistic children, wanting advice on how to best get law enforcement’s attention about abuse there, and get the abuser fired, and is possibly facing retaliation.
  • A full-time caregiver of a girl who’s in the hospital with a life-threatening medical condition, the hospital might not be acting fast enough to save her life, the person who has actual guardianship over the girl is too strung out on drugs to care what happens to her.
  • An autistic person is trapped in the psychiatric system and their parents are trying to get them to sign over all their rights, and they have enough psych labels that their friends are afraid that most people in the autistic community would claim they belong in the system getting “treatment” they don’t want, and that they just lack insight, etc. And since I’ve been on the other end of that and have firm beliefs on that matter, I’m the one initially being written to about it.
  • Someone wants my help coming up with solutions to make certain online environments accessible to a broader range of people than most people think of accessibility in terms of.
  • Online meetings for a political autism-related group that I’m a co-founder of, that I’ve only managed to show up to one of in the past several months of weekly meetings, and that I’ve gotten weird reports of it being a ‘support group’ now (not something it was intended to be) and of it ‘dying a slow death from neglect’ (well, yeah, but I’d hope that a group with lots of people could function with just two people not being there).
  • Someone wants me to work on the stylesheets for more than one website on this server, since I know my way around CSS and the like better than the person who does all the hardcore sysadmin stuff.
  • I have to email a few people about participating in a panel discussion at a conference, then write my own part in it (topic – force-fitting oneself to stereotypes, or being force-fit into them by others, and consequences, basically).
  • I have to write a longer speech for a different conference (where I’m hoping to incorporate concepts from disability politics into a discussion of autism, in order to get a different from usual perspective).
  • About 3 or 4 interview requests, one of which I’ve agreed to (specifically because I’m only one of several interviewees within the self-advocacy movement, instead of being made into some single representative of all autistic people and all our opinions, which is both impossible and not something I’ve ever been interested in), which means four or five days of my time doing things, and then another several days of way less ability to do things than usual.
  • Several people wanting to know about my life in general, in ways that I might or might not even tell a total stranger.
  • Several people apparently wanting me to jump in and help them with flamewars I’m not interested in engaging in.
  • People developing assistive technology wanting me to look over their ideas.
  • Many, many people wanting DVDs of various videos and/or permission to show them places.
  • Lots of comments that I haven’t yet moderated, in lots of places.
  • An entire list that I’ve been not managing to hang around to moderate much of either.
  • Lots of people (here and elsewhere) angry about their comments not showing up, and assuming the worst about the reasons.
  • Lots of people not angry about their comments not showing up, but just repeating their comments lots and lots of times because they think they didn’t get through even if it was just me not getting to them yet.
  • Someone wants proof that I can actually type, and is interpreting all of the previous results of making videos with my prior crappy camera with no tripod mount (and thus no way to tilt the camera or suspend it in various locations without a lot of duct tape and other contraptions that I don’t always have the ability to deal with), as intentional manipulation to make it look like I’m typing when I’m not. And, then, is going on to interpret my not getting to his requests for a video Right Now as proof that I’m not really typing.
  • Someone wants to name a robot after me.

That’s not all, that’s what I can remember right now.

Two things determine how I respond: Capability and priority. Sometimes something’s a high priority but I just can’t do it, sometimes something’s a low priority and I can, so the two don’t always go together and it’s as frustrating to me as it is to anyone else.

I’ve noticed Laura getting a lot of stuff too, and a lot of it being framed in terms of demands. One day, she’d been basically working all day and night on the server (which is well past her capacities as a sysadmin in some respects), as well as taking care of me. Note that she’s autistic and has a severe physical impairment as well. She took a break to watch her favorite news program for an hour, and then she was going to get my medications set up for me, and then she was going to do more work on the server.

Well… she got a phone call halfway into that news program, which was her only break for the day. The phone call was from someone who wanted a password. Fine. She said she’d get it within an hour or so. The person at the other end of the line apparently said, “No, not in an hour or so, now,” or something to that effect. Meanwhile, she was getting emails saying that she had to do something else, for a totally different website, right away, and that if she didn’t do it, she would have to do something else that was even more impossible to do right away.

This is one person trying to do a whole lot of work on an entire server full of websites, while also being thrown into the role of caregiver for that time, and everyone seemed to be pressuring her to do their part first, and right now, and no it couldn’t wait half an hour or an hour. Each one seeming to think they were the only one wanting her attention right then, and some of them frankly not seeming to be able to differentiate between a need and a want, or between a possibility and an impossibility.

To be fair, one of the people demanding things right away, while the things didn’t really need to be done right away, that particular person was experiencing enough hardship at the time that they must have viewed even Laura as having the luxury to do just about anything. That happens, I’ve even fallen prey to it, so has Laura I’m sure, but it’s not always the most accurate assessment of things.

I almost wish there was some way to show people exactly who we are, and what our lives are like, and what our abilities are like, though. Instead of that, I’ve just produced that list of stuff that people are writing to me about, in the hope that it will show exactly how many things there are to pay attention to. If I could really get to all of these at once, and the many other things I’ve accidentally let drop over the months or years, I would be at a workplace right now getting paid, instead of my actual situation which I think if anyone magically teleported here and looked in my room right now they’d see the problem right away. At any rate, I’m only one person, together we’re still only two people.

So also a blanket apology for several things:

To anyone I didn’t get to when something was really important, for not getting to them.

For not being as political as usual in my writing. And for allowing myself to mostly get sucked into apolitical sorts of things.

For the actions of my spam filter. (No, I didn’t cause it, but it still caused problems.)

For allowing myself to get extremely sloppy when I write about things, and often writing as if things are true that I know are not or are only approximations of the truth, because I can’t easily right now find the language for what I really mean. (An example would be discussing particular psychological terms without sufficient discussion of what destructive concepts they embody.) Or even things that I just outright don’t mean, because the phrases pop out of my fingers fully formed, triggered by the words before them.

For often writing only half of some idea without addressing the other half as much as I should.

Also, a new website on our server is this (edited to add: try clicking again, I gave the wrong web address before):

The Real Voices of Autism. It’s running social networking software, but the point is it’s for autistic people and our allies. Not for any one person to claim to be the only real voice of autism or anything. It’s intended to connect people with similar interests and stuff, but also to make it easier to form discussion groups and have discussions about how to do various actual projects in the real world and stuff like that. And to share links, and, etc. As Laura put it, “This is your site. Do what it what you will, provided of course that you’re not abusive.” (And “do what it what you will” is actually exactly the kind of thing I was talking about earlier with word trouble, only some of mine has been a lot worse than that, and I’m having real trouble reading lately.)

So… I hope any of this has made enough sense. I don’t want to intimidate anyone who’s trying to contact me, I just want people to be more aware of what the real situation is with requests for things.

Excuses to be a jerk. (for BADD)

Standard

This is my post for Blogging Against Disablism Day. You’ll have to wait on the poems/other writing, because I have to write this instead. I’m having trouble reading, so I am afraid this might be sloppy. And it is very long, getting into pretty high levels of detail on some things. I hope the intended ideas behind it are clear by the end. As usual, while I’m talking about specific sorts of situations with a narrowly-defined bunch of people, I’m thinking of something a lot more broadly applicable than that.

I have noticed a trend online, which is for people to say to others, “You are not autistic/AS, you are just using that as an excuse for poor social skills or an excuse to be a jerk.” I have an online friend who frequently gets this reaction, when she says something she considers just direct and someone else finds it insulting and flames her, and she tries to explain, only to get that response. Indeed, things like “Asperger’s is just an excuse to be socially inept” or “people who use Asperger’s as an excuse” have become givens in some parts of the Internet community. It is even accepted (with little to no apparent evidence) by some autistic people as fact.

There are several layers of disability stereotyping around this, and I want to attempt to disentangle as many of them as I can.

To lay some foundation, though, I want to talk about who autistic people are, using ‘autistic’ in the broadest possible sense. Please note that the statistics that bring us ‘1 in 166’ and ‘1 in 150’ and the like include people under the medicalized categories of not only autism but also things like Asperger’s and PDD-NOS, not that those three can even be distinguished at a superficial glance without knowing anything about a person’s early history. I don’t intend to talk more about who we are in terms of some sort of medical criteria though. I want to talk about who we are in the lives of people who know nothing about autism, or even those who know a little but believe themselves to know a lot. Because, with numbers so high, virtually everyone has known at least some of us.

Like a lot of autistic people, I have pretty good radar for other autistic people, or more broadly, other people who are neurologically atypical in some way. This doesn’t mean I can’t be wrong, but in all cases where I’ve been able to test it, I’ve been right. And these have been primarily places where a person would not be expected to be autistic. Prior to knowing about autism, I picked up on these things, but was only able to put them in relation to people I knew — people “like me” or “like my brother” or “like my father”, etc.

I have noticed, though, that other people, even many professionals, don’t always know what to look for. They think of “looking autistic” in a narrow way that has to involve, for instance, certain repetitive movements and a total lack of speech. When this is only one of many ways autistic people can look.

So I am going to attempt to describe what autistic people often look like. Be aware that non-autistic people can look like some of these things some of the time, and autistic people won’t all look like all of these all of the time. I’m trying to put into words something that I unconsciously map in a matter of seconds, and that will always be imperfect, much like all attempts I’ve seen so far to explain typical facial expressions to autistic people. But I hope to give other people some idea. It’s certain combinations of these things, not just one of them. And some relate directly to being autistic, while others are more about how autistic people might pass.

Some Of How I Notice Other Autistic People

One set of things I notice involves unusual patterns of movement.

The one most people know already, is what most people describe as ‘stimming’. Repetitive, unusual movements. Rocking of the torso (many different rates and rhythms are possible), rocking or shaking of head (front to back or side to side), flapping of hands (different directions, rates, and rhythms are possible), twisting and flicking of fingers and wrists, bringing the hands together and apart again, wringing the hands, moving from foot to foot, and many complicated movements that defy description, involving twisting, rocking, flipping, flicking, etc of lots of different parts of the body.

This can be movements that are just there in the background, it can be ones that seem to be related to emotion or level of overload, and it can be ones that seem deliberate.

There are also many people who have learned to disguise this to some degree or another. They might do mannerisms that are more typical-looking, but with an odd rhythm or intensity. They might do less typical-looking mannerisms with lower intensity, or switch between them so rapidly that they would pass as little mannerisms a person might ordinarily have.

One woman I know developed a whole series of ‘stims’ to do that cannot be seen if you are sitting in a desk, because she went to a fairly stereotypical Catholic school where you got whacked with a ruler for things like rocking. So she fidgets with her hands in front of her belly, and bounces her legs constantly. However, if she is forced to keep those body parts still, she will end up rocking or doing other things with her upper body. She can’t stop the movement, she can just move it to some other body part. Other people can actually stop these movements entirely.

I will also notice an unusual lack of movement. A person might move only as many body parts as they absolutely have to, in order to get the job done. Their body may, in between expressions and actions, remain as much as possible in a particular neutral position. This neutral position is one that other people can usually cover over more easily than autistic people, although some autistic people do manage to cover it well. I particularly notice their hands — slightly curled in, and their mouth — shaped like a trapezoid.

Their posture and walk can be unusually stiff or awkward-looking, or looking like someone much younger than they are would walk. Their arms might be straight down at their sides, held up with elbows bent near their chest, or clasped together. They might lean over slightly when they walk. They might have what seems to be a normal walk on one side of their body, and an unusual one on the other side. All of this may be more obvious when they run than when they walk. They might run with one arm held up in the traditional jogging position and the other flapping loosely at their side, or one rigid and one loose.

They might move with unusual speed or unusual slowness, or even a combination of both, with little to no movement in between the two extremes. Their movements may look heavily deliberate and premeditated, sometimes even if they’re not either one of those things, or not the sort of thing that ‘should’ be either one of those things. They might be clumsy, or extremely agile, or a combination of both in a way that is very odd compared to standard movement. They might have a wide discrepancy between ‘triggered’ or involuntary movements (which might be agile, or at least more agile or rapid), and voluntary movements (which might be slow, clumsy, or non-existent). This may be similar to people with other sorts of movement disorders (such as parkinsonism) without actually being those same movement disorders.

They might seem to string together movements in an unusual way, going through an entire series of movements on autopilot just to try to do something that comes in the middle of that series of movements, and then having to trigger another set of movements in order to get to the next part of what they want to do, and so on.

Here is a video of an extreme version of what I mean, being my rendition of what an attempt to boil water in a teapot can look like on a very bad voluntary-movement day (simulated by using the camera by remote control while not putting a lot of effort into suppressing the triggered responses seen in this video; on a truly bad day that way, I would not be able to suppress this sort of thing even with a lot of effort):

But such things can also be a lot subtler, involving fewer tries to get it right, and lesser degrees of overshooting the mark. A person can also be unable to move voluntarily without involuntarily moving other body parts that aren’t at all necessary to the movement, and that also aren’t the kind of movement that neurologically standard people do. (Neurologically standard people do seem to move more than they have to, but the moves are all coordinated into particular expressions and postures and such that are very different than what I’m describing here. A person doing what I’m describing will normally look awkward or unusual when doing it.)

The person’s facial expressions can look blank, oddly plastered-on, or unusual for the situation. They might also have standard facial expressions, but in a way that is more fleeting than usual and only possible involuntarily, looking fairly fake when they try to do them on purpose. They might be giving only fake eye contact, or giving very intense eye contact. They may have exaggerated expressions, or expressions that are barely discernible (I have two different smiles for instance, both genuine, but one of them is impossible to tell is a smile unless you know the position my mouth starts in, and the other looks like a regular smile).

An autistic person who is passing for non-autistic can have the movement pattern normally seen by a person who is extremely insincere. Sometimes similar to the “used car salesman” look, or the “Hillary Clinton” look for that matter. Except that in an autistic person, the apparent insincerity is usually due to a poorly-concealed effort to pass for normal, rather than an effort to manipulate people into spending their money/votes/whatever (not that a person can’t be doing both, but I’ll get into that later).

Another thing I notice is unconscious echopraxia, involuntarily engaging in the same movements as someone else, with no conscious intent and outside the normal realm of social mirroring (although it might sometimes be in addition to what looks like social mirroring, because an echopraxic person will often mirror things in both standard and nonstandard ways).

And of course, less social mirroring than usual, too. When I was 12 years old, the person who’d go on to become my best friend told me something, both of us totally unaware of autism at the time. She said that if I was in a room full of people, she’d bet that I would be the one person whose body language, breathing, and other movements were not unconsciously synced up with everyone else’s. I was perplexed by this at the time, but it’s now one of the ways I can pick up on people who might be autistic, in a crowded room.

There can also be attempts to mask involuntary weirdness by appearing to be voluntarily weird. Since chosen non-conformity can in some circles have higher social status than involuntary non-conformity, and since it can lead to an internal sense of being in control of one’s own weirdness, even though of course the person isn’t really. The person can seem afraid of being discovered as doing this, in some cases, too. So there are often autistic people among people who appear deliberately and ostentatiously eccentric, just as there are often people with learning disabilities among class clowns who’ve figured out it’s better to be considered funny than considered stupid.

(Be aware, though, that it can be very hard to tell, in an autistic person, the difference between something done deliberately and ostentatiously, and something done without having any other choice. This is because some of us have subtle motor or proprioceptive trouble that can lead to that impression in people who don’t know what they’re looking at, just as people can sometimes believe that people with Tourette’s are just ticcing for ‘negative attention’.)

Another thing to look for is a certain surprise factor. I’ve spent my entire life watching people be surprised at me: They’re either surprised by my intelligence and other abilities, or surprised by what I can’t do. Surprised is the wrong word sometimes. Sometimes they’re so surprised that they either try to disprove my abilities, or try to disprove my difficulties. Autistic people can be that bright person that you just can’t believe is really so dumb or spaced-out sometimes, or that dumb or spaced-out person that you just can’t believe is so bright or talented sometimes. Many of us spend our lives either being accused of cheating or otherwise pretending to be competent, or accused of being lazy or otherwise pretending to be incompetent, and a surprising number of us get both at once from different people, depending on whether they saw a talent or an area of difficulty first. This happens because most people fill in the blank areas of someone who looks capable at one crucial thing with “all these things I haven’t seen them do, they must be able to do, and if they’re not doing them it’s just because they don’t want to right then” and fill in the blank areas of someone who looks incapable at one crucial thing with “all these things I haven’t seen them fail at, they must be unable to do, and if they’re doing them there must be some kind of trick to it”.

Another common feature of autistic people’s abilities is day-to-day variability, and variability based on situation. In one situation, we can do things. Change one thing, or wait until we’re tired, and we can’t. Autistic people of all perceived “levels of functioning” tend to be accused of laziness, manipulation, or “playing dumb” at that point unless people understand that it’s really that variable, or that changing one thing can really make that big of a difference.

If you’re not autistic, keep in mind that in our areas of difficulty, we often have to work hard just to get to the level that you might consider the most basic level possible, and that expecting us to sustain even that level of ability, let alone those above it, is like expecting most people to be able to do calculus all day. There’s just no way.

So what this all outwardly looks like is a lot of surprises and a lot of variability in what we are doing, or can do. People who are trying to mask their incompetence at certain things will sometimes portray themselves as either “lazy,” “just screwing with you,” or as free spirits doing what their whims tell them to do and passing from one desire to the next in some sort of floaty and ethereal way. There are always social roles these things can be masked by, and even when they’re not positive ones, they can be more positive in some situations than being considered truly incapable. And being unable to do something can always be masked by “not caring” about it — “I don’t care about these ridiculously strict notions of personal hygiene anyway”, whether true or false, is a great way to mask an extremely low level of self-care skills that would, if noticed for what it is, potentially lead to real trouble. Affecting an intellectual-snobbish air of indifference to “such trivial matters” as ordinary social interaction can work for some people, too.

In a person who is passing, there is also often tension between who they’re trying to appear to be, and who they are. It can look like the usual angstiness some people go through; after all, most people hide certain aspects of who they are in order to fit in. But passing as non-autistic is a bigger disconnect than pretending to like bands you really hate, or even than pretending to like people you really can’t stand, or to feel feelings different than the ones you know you have.

Passing can mean, in its most extreme forms of disconnect, having no or close to no understanding of most of the words one is using, most of the interactions one is engaging in, etc. Possibly even not understanding the true nature of words, while using them all the time. It can mean not just feigning interest in things one is disinterested in, but feigning interest in things one doesn’t even understand, while, further, not even understanding what this ‘interest’ thing is that one is feigning. It can mean not just putting on different feelings than the ones you have, but not understanding what feelings you are putting on, nor how (or even that) they are supposed to relate to those sensations you do intuitively understand that occur inside of you in response to situations.

Basically, a skilled enough autistic person can take patterns of behavior and language they see around them, absorb them for long enough to acquire a huge repertoire, and recombine it into something resembling an entirely different personality than they actually have. And they can, again if skilled enough, do this with a level of unawareness more than most people can even imagine. Most people assume it stops at “saying things you don’t mean,” rather than “saying things without awareness of that particular concept of meaning,” or even “saying things without knowing what language is for”. For an autistic person, it really can be that extreme (and with the usual fluctuations and shutdowns and juggling of abilities, can vary between that extreme and less extreme).

So one outward thing to look for, is gaps in this kind of act. Seemingly incongruous statements. Insistence in someone who seems otherwise normal or eccentric, that people don’t really know who they are (especially insistence despite people trying to tell them this is the usual existential angst, rather than the result of a profound disconnect between comprehension and behavior). Sudden and seemingly over-reacting levels of rejection of another person’s identification with the persona they’re passing as. Pauses during speech that occur at slightly unusual points in time. Seeming to have two “layers” to their actions that are utterly contradictory in nature, with one set of actions pointing to their actual levels of comprehension and thinking and interest, and another set of actions masking it that might seem to point to higher levels of comprehension than actually exist.

Be aware that when the above happens, the disconnect is on the level of a disabled person passing as non-disabled, not a whiny person who just doesn’t realize how much like everyone else they really are. Yes, there are things all humans have in common. No, that doesn’t solve the severity of depression, disconnect, and alienation that autistic people often experience when passing, particularly when the person they’re passing as (or being passed off as by others, since passing can be entirely in other people’s heads, too) understands things they don’t. It’s a lot closer to a deaf person passing for hearing (while entirely missing at least 80% of conversations as a result), or a blind person trying to drive a car without crashing it or letting on that they’re blind, or a person from one culture being thrown into a totally alien culture (where nobody’s ever even heard of one’s own culture) with no preparation and trying to pass as comprehending, than a person with certain abilities trying to pretend they are similar to someone with roughly the same set of abilities but a different personality. Not that that’s easy either, but there’s an order of magnitude or two here that needs to not be missed.

Of course, not all autistic people are in a situation where passing is possible, whether due to their own abilities, the expectations of those around them, or both. And passing has gradations, too. It’s not like there are those who pass and those who don’t pass. It’s more like there are those who pass to different degrees, as different things, and in different situations. Passing can also be wholly unintentional and unnoticed, but I’ll get into that later.

Speech opens up a whole other set of possibilities of things to notice.

Tone is important. Often I’ll notice someone having more of a monotone than usual. This can range from subtle lessening of tone variation, to absolutely robotic-sounding speech. Some people have very little variation in tone, but more variation in volume. Their voices can sound flat to most people, but do show inflection, just not by changing pitch.

A person can also have a rhythmically varying tone that varies always according to the same rate. It may be just as unvarying in some ways as a monotone, except on a broader range of pitches, like a sing-song voice that repeats the same tones over and over again.

A person’s voice could also sound like they are making speeches every time they talk. I know of a few autistic people who mastered public speaking before they mastered conversational speech, and it can sound like that.

Their voice can also sound like a mishmash of different tones, sometimes a totally different tone, and accent, for each word or clump of words. When it shifts very often, it can sound like one of those automated telephone services that have different words programmed in with different intonations for each one, and a computer picks the order they go in.

It can also sound like a more smoothed-over version of this, with longer uses of the same tonal pattern, but still spliced together to some extent. Or it can vary between several of the things I described above, based on a whole lot of different factors.

A lot of times people are easy to spot by not having normal levels of modulation to the volume or sound of their voice. A lot of autistic people have what most people would consider a very annoying voice: Too loud, too nasal, the wrong pitch, the wrong tone, etc. But we can also have voices that are too quiet, very breathy, almost whispering. And, like movement, some people can do one or the other, but have trouble finding a middle ground for long. Many autistic people I know have some ability to control the volume of their voice if they concentrate on it, but the moment they slip up, they go back to loud or quiet.

Many autistic people have a sound in their voice that I do not know how to describe, but it’s a sound I associate with being cognitively very distanced from the production of the words. Some other autistic people could hear it in my voice when I spoke with seeming fluency, and they pointed it out to me. I can hear it in the voices of some of my friends, and have one friend where I can always tell when he’s having more speech difficulties because the sound gets more pronounced.

Someone tried, without ever hearing this sound, to convince me it was just a matter of nasal resonance or something, but it’s not that simple. I can hear it the same way other people can hear excitement or anger in each other’s tones by recognizing what their own voices would sound like. I know from the inside what it feels like, and what I sounded like when I spoke, so I can hear it in others. So much for a lack of empathy.

In people who use delayed echolalia as a functional means of communicating, or even of feigning communication, there are often certain telltale signs as well. The phrases used might seem slightly out of place. There are pauses in unusual places during the person’s speech. There are sets of sentences and phrases they commonly repeat to fill space while trying to come up with more words. There can be, if the mechanism is not working right or if the communication is only feigned, things said that are not the sort of thing you would think the person would ever really mean. The person might on the other hand come up with entire paragraphs beforehand, and then spew them all rapidfire out of their mouth.

There is always immediate echolalia, which tends to be pretty obvious. But there are also hidden forms of that too. My father and I both sometimes mouth things that other people are saying either right along with them or just after they say them, and if I hear a sound of a certain pitch my throat tightens as if I were trying to sing that pitch. We might echo noises in our surroundings too, not just words. I often involuntarily do cat, bird, and microwave oven noises, and I have heard of other autistic people who do car alarms. Some of us repeat noises or words over and over to ourselves, or have vocal tics causing forceful and involuntary noises or words. (These may be disguised as “just being silly” or “nervous habits”.)

Also I often hear autistic people who don’t talk at a standard rate for the society they’re in, either very slowly or very quickly. Sometimes almost too fast to understand. I hear people having trouble pronouncing words, too, which makes some people sound almost as if they’re not speaking at all, and other people sound slurred or indistinct in other ways.

And some autistic people seem more likely to stutter, either on sounds or on entire words. Or not to talk at all.

Many autistic people, maybe even most, seem to have real trouble with keeping language consistent. So they may vary a lot in how often they can speak, or how fluent or relevant to their thoughts it is.

And language itself is a whole different thing. Some autistic people seem completely lost without it, some seem to have extreme difficulty with it, and some seem to have both situations going on. If I see a person who absolutely can’t seem to function in any situations except those using language, I do think of whether they might be autistic. But same with if I see someone to whom all language is foreign, regardless of how proficient they are or seem to be. (For instance, I’m a very fluent writer when I can write, but language is very foreign to me, and I know people who are not as fluent writers but the only way they understand anything at all is through language.)

Another thing I notice is when people relate to things around them in an unusual way that suggests they perceive them differently than usual. Sometimes this involves noticing the texture, pattern, material, and shape of something more than the identity it acquires with words and social understanding. It can also involve physically interacting with objects in an unusual way, like smelling or tapping them.

One thing I find hard to put into words is an aspect of noticing that is different. It’s not just noticing things other people don’t, although that is a part of it. It’s also that there seem to be a set of things that people, especially in groups, are locked into noticing at the expense of other things. If a group of people is sitting around all seeming to pay attention to the same things as each other, and one person is noticing and relating to something outside that set of things, that is another clue, and an important one if it happens often and there’s no other explanation for it.

There’s also an odd thing I notice where, despite our tendency to stand out in other situations, many autistic people seem to not be noticed by other people. They can be standing right in front of someone, talking right to them, and everyone acts like they’re not there. It’s not a malicious sort of thing, they just don’t seem to notice the person at all.

I notice that when in groups of people, autistic people will often laugh just after everyone else laughs. They might have an odd laugh, and laugh harder than necessary in an attempt to prove they “get it” (which usually backfires).

I notice people talking so much that other people get bored and want them to stop, and they don’t notice, and keep talking. And also having trouble starting to talk. (Even both in the same person.)

I notice reactions to things that change, that other people might not react to. Even changing over from one room to another might be difficult, or from sitting to standing, or from any action to another. When change is unexpected, there’s a sound I can hear in people’s voices of barely-suppressed panic. And of course sometimes panic becomes more obvious.

And some autistic people seem to try to get used to riding change like a surfer rides a wave. Or find ways of masking a difficulty with change (and all that new information to process). Often having familiar objects helps, although what these objects are might not be obvious: Many autistic women I know, including me, have at some point or another used jewelry for this purpose, because it can be easily and unobtrusively carried just about everywhere and fiddled with, and is culturally accepted for women.

I notice autistic people in various levels and kinds of of overload, shutdown, and meltdowns. I also notice autistic people reacting very strongly to specific sounds, colors, etc. Whether because it hurts them because they’re sensitive to it, or because they just hate the stimulus or something associated with it, on an involuntary but emotional rather than perceptual level.

I notice some autistic people seeming what most people would call very rigid, and others almost the opposite.

I could probably go on for the length of a book, but I won’t right now. I think I’ve made the point that there are a lot of ways that I notice autistic (and other neurologically atypical) people. Next, though, I want to talk about what other people generally seem to see autistic people as.

How Other People Often See Us

One really important thing to be aware of is that, even if everything I just discussed and more would now seem really obvious, most people don’t seem to think of autistic people as autistic people, because they don’t know this category. They have different ideas about who we are, and their perception of us tends to blend in with categories of people they’re more familiar with. We’re not one set of people, in the eyes of most people. We’re assorted specific people, but we’re not seen as who we are, either. We’re just seen according to what roles people perceive us as having.

Here are a number of qualities I’ve seen attributed to autistic people. I am not saying they are right or wrong. I am just saying, these are the attributes other people often tend to give us based on qualities that are specific to being autistic, or specific to being an autistic person who is passing or being passed by others as someone else.

We’re the people who try really hard to fit in, but everyone knows we don’t. Some of us might be able to fit in as long as we’re content to be used by others in various ways — as the butt of jokes, or to get back at each other.

We’re that person who everyone played jokes on, but who kept coming back for more, being excited to be in on the whole thing even if it was only as the target.

We’re that person who always makes a point of laughing at that other weird person, in a bid for acceptance. And we get only partial acceptance at that.

And we’re that other weird person, too.

We’re the person everyone loves to hate, and can usually come up with some excuse to do so out of a repository of things we’ve said or done. But it’s really not that thing we said or did that makes them hate us. It’s something else, something intangible, about who we are. The particular thing they cite is just an excuse.

We’re that person people are embarrassed to be around, but also embarrassed to be embarrassed by.

We’re the people that get called spaz, retard, psycho, nerd, dork, jerk, loser, idiot, flake, space-case, and geek, among many other names.

We’re just plain weird.

We’re that person who always seems to do weird things, which must be for attention, because that’s why people do weird things. Or something.

We’re the people who just don’t want to do things, and that’s why we don’t do them. It has to be disinterest, not difficulty.

We’re the people where people always say of something we aren’t consistently able to do, “He can do that. When he really wants to, ya know.” And the people who say the flip side about: “She can’t really do that, someone must have helped her,” or “He can’t really do that, you must be imagining things,” or “She can’t really do that, she must’ve cheated.” Often we’re both in the same lifetime, even sometimes at the same time.

Our silence can be interpreted as everything from lack of the ability to think, to being stuck up, to being the “Strong, Silent Type” to not feeling like talking.

We’re the people who others look at our strange reactions to things and say we’re on drugs, even if we’re not. We might also be people who consequently find acceptance of some amount among drug users.

We’re the person who everyone calls “retarded” who suddenly comes out with things that seem very intelligent, and the person everyone calls a “genius” who can’t do some really simple stuff.

We’re flamboyantly, deliberately weird, intentional nonconformists who don’t care what people think about us, or who want to feel special.

We’re stupid, boring, and self-centered.

And it goes on and on. The one thing we don’t have is a place in most people’s heads as who we are. There are already all the above explanations and more. (Not that medical explanations of autism say who we are either. But there’s a whole lot of who we are that gets missed if you take our differences in thinking and perception, the ones that get called autism in the end, out of the equation.)

Disability Stereotypes

There’s one particular disability stereotype that’s going to become very relevant here. It’s the idea that disabled people get so many cool things and exemptions from things everyone else has to do.

It doesn’t matter that the parking spaces are close to the building because we need them to be, other people often will see them as a luxury.

Instead of seeing accessibility as barrier removal, a lot of people see it as giving disabled people special rights, privileges, and luxuries.

And there’s one other common attitude towards disabled people that’s relevant here: There are a lot of disability-themed insults, and lots of hatred and bigotry towards disabled people, not to mention all the systemic injustice and all that. But at the same time, a lot of people would feel extremely guilty about teasing or bullying a disabled person, or getting mad at someone for being disabled.

Just combine those two perspectives about disability, and stir a little.

And then… cognitive dissonance.

So there’s all these ways that autistic people can stand out, but most of us don’t stand out to most people as autistic. Even the ones who are the most obvious, often are mistaken for some other kind of strange or disabled.

People already have these ways of relating to us.

And many of those ways are not complimentary. They have a lot bad to say about us, and to say or do to us.

And then it turns out… we’re autistic.

Then the little “I must feel guilty about this if they’re autistic” thing kicks in, if they’ve absorbed that particular way of seeing things.

And most people don’t want to see themselves as mean, or the “sort of person” who would do these things to a disabled person.

Some people will at that point apologize.

Others, though, will want to stay mad at us (because people who are mad at someone often do), or else want to continue to have their excuses (based in estimations of our character, covering for discomfort with the fact that we’re unusual in the first place) to treat us poorly.

It’s really hard for some people to go from, bullying the outcast nobody likes anyway (so it doesn’t even quite count as bullying, does it?), to bullying a person with a genuine disability. It’s really hard for some people to go from “I’m mad at someone because they said something offensive,” to “I’m mad at someone because they’re literal about language.”

It’s a lot easier, to think any of the following, “This is a jerk. This is a person with all those bad qualities that make them someone we love to hate. This is just some idiot who keeps coming back for more, so he deserves what he gets. This is a gullible person it’s fun to mess with.” Etc.

It can even seem like you are granting one of those special privileges out, if you say “Hold on, I was wrong to do this, or think this, about this person, because they’re being literal, not obnoxious.” Or whatever.

And so there’s guilt, there’s cognitive dissonance about not being “that sort of person”, there’s resentment of what seem to be special privileges.

And so it becomes either, “You don’t have Asperger’s, you’re just using it as an excuse,” or “You may be autistic, but that’s no excuse.”

As with any set of negative stereotypes, if a person comes a long who is both autistic and mean and seemingly uses autism as an excuse to be mean, they confirm the stereotype. And then everyone who is just doing things an autistic way, gets to confirm the stereotype without even fitting it.

By now, people at least ought to know that the presence of women who are or seem irrational doesn’t mean women are particularly and specifically irrational. But stereotypes like that are still confirmed in people’s heads by the existence of people who fit or seem to fit them.

And of course, if you hear something often enough, it seems true even if it’s not.

So then there’s this sort of urban legend, that the Internet is filled with hordes of jerks who use autism as an excuse to be jerks. And the moment an autistic person shows up using autism as an explanation of something about themselves, then that stereotype is thrown in their face.

And autistic people ourselves have certain choices of how to respond to that.

We can say, “Yes, that stereotype is true. But the people who fit it, make the rest of us look bad, make it worse for the rest of us by confirming it, etc.”

We can just watch it happen.

Or we can say, “Hey hold on a minute, that’s a stereotype, and a harmful one at that. An explanation isn’t an excuse. We do have this particular kind of trouble with language, or engaging in typical interactions, and we are going to make mistakes that can be explained by being autistic.”

I’m sure there are other things too.

But every time an autistic person uses the “They make the rest of us look bad” thing, they’re falling into the same trap as women who direct their anger at being considered irrational, at particularly irrational women, instead of at the source of the problem. They blame those who fit, or seem to fit, the stereotype, for its existence and continuance, even though that’s not the source of negative stereotypes about people.

And they then continue it.

And people then continue to use it against autistic people.

In the end, this stereotype itself looks to me like an example of something that is frequently as an excuse in order to be a jerk… towards autistic people.