That instinct was back again this week. I’m pretty sure I’ve written of it before. Despite terrible conscious body awareness, this instinct has popped up to save me more than once. It tells me “There’s something wrong with your body. If you don’t find a way to detect and treat it, you could die or end up in the hospital.” It sounds ominous but it’s not a panicked “OMG I’m going to die AAAAAAACK!!!!”, it’s more like a calm but firm realization.
In the past, it has warned me of things like organ failure, untreated bronchiectasis (treated it’s only a little more dangerous than asthma, untreated it can kill you), and the beginnings of going septic. And this week it popped up two or three times (seemed like twice, but the first time it happened it seemed to be warning me about two separate things).
The first time it popped up recently, I was away at a recreational program. It told me to go home, not even to wait a day, just go home now. The warning seemed to be twofold: Something was going wrong with my lungs, and my body was so out of energy (from being pushed by others, but that’s another story) that I was experiencing symptoms I haven’t experienced since my last major health crash. Between the weakness and the coughing up disgusting colors of phlegm, this seemed pretty obvious, but the warning gave me the extra urgency not to wait overnight.
So I got some antibiotics ordered and went home. By the next day, my brain was actively checking out. By checking out I mean, being technically awake but not conscious of anything, or being aware only of these weird series of images that went by. It had a feel similar to past experiences of delirium, rather than shutdown or something, and during periods of better awareness I became very glad this was happening only in a familiar place among familiar people. And I was able to begin the resting that I badly needed in order to get through this in one piece.
I began to feel a little better the next day. But then, abruptly, things became far worse. I couldn’t get to the bathroom and back without falling or coming close. I sometimes felt like I was going to pass out. And I couldn’t get near food or water. I couldn’t put words to why, I would just try to drink and my head would turn away. And I felt generally cruddy and woozy. And most disturbingly, the instinct was back. It said “There’s something else wrong and this time it’s not your lungs or sinuses but I can’t tell you what it is.” Grrrrrrrr.
I told all this to someone who persuaded me to go to the ER. (Note: I nearly always have to be persuaded. A good friend describes my attitude to that place as “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.” I’ve just got friends who refuse to give in if I say I don’t want to go there. And mostly I’m glad despite my loathing of the place.) The reasoning was that the lack of water alone would make it harder to cough things up, and bronchiectasis makes that hard enough already, and that could spiral downward fast. Plus it wouldn’t be good to pass out alone in my apartment.
Once I got there, the events unfolded in a very strange way. Normally they’ll give me IV fluids for practically no reason at all, but this time (when I was actively saying I was unable to drink) they insisted on testing my urine for dehydration. I was having too much trouble holding onto language to explain a lot of things so someone was with me explaining them. They kept demanding to know why I couldn’t drink, and the person kept telling them that autistic people can have so much trouble describing subjective experiences, that sometimes “I can’t do _____ and I don’t know why” is all you can get, and that you have to really dig and do a lot of tests if you want to find the reason, rather than acting like nothing is wrong because the person can’t name it. I was treated radically differently from my roommate, who was treated with the utmost respect. (This is common for DD people in general, including autistic people.) They even tried to get me to drink water, which is weird as usually when I’ve been given IV fluids I’ve been perfectly capable of drinking but they’d never given me water in a cup. And all I could do was wet my tongue a little and then my head turned away.
Nearly eight hours later, they came back with a way more respectful attitude to me. Why? The urine test just happened to pick up on the fact that I had a UTI. And they now thought that between a urinary tract infection, sinus infection, and lung infection, I might just have a reason to have no appetite. So they then proceeded to give me two bags of IV fluids and a prescription for yet more antibiotics before letting me go.
What scares me is what would have happened if they hadn’t detected the UTI. It’s not like they were even bothering to look for an infection. The information just popped up when they were testing for something else. And while I could tell the problem was somewhere in my torso, that’s a huge area of the body to look through for symptoms. Nothing pointed me in the direction that a UTI would have been in. And this physician’s assistant was not doing what you should do with a sick autistic person (check for all common things that could cause the symptoms). In fact, since my way of communicating my loss of appetite was so unusual, she wasn’t even treating it as a loss of appetite but rather a matter of willpower or not wanting to drink.
But somehow despite all that I’m on all the antibiotics I seem to need to be on, and seem to have found all the infections that were setting off my “get treated or you may not survive or at least may end up in the hospital” instincts. I’m just glad those instincts are there, or I would have delayed if not avoided altogether, getting everything diagnosed and treated. I certainly wouldn’t have known anything but the lung/sinus infections was causing all the new symptoms. It’s odd to have a body that won’t tell me basic information half the time, but will tell me “You’re in danger, get help NOW.” I wish that simply communicating this instinct to a doctor would result in getting tested for whatever things seemed likely. I think I could do that with my GP, but not with some of the random people you get in the ER. And trying to negotiate all this while disoriented and confused is just… gah, I’m glad it somehow worked out because I honestly don’t understand how, especially given I wasn’t “all there” during times I needed to be communicating clearly.
By this point I’m pretty wiped out and still having appetite problems, but I’m feeling a lot better. I don’t need my bipap while awake anymore, I can get around a little using my old crutches for stability, and my brain is no longer randomly checking out, nor do I feel like any moment my surroundings will burst into a Disney Acid Sequence (warning: the link is to TV Tropes and may suck you in and spit you out twelve hours later). And I’m hoping we caught everything the instinct was talking about.
I suppose the question in this post is for anyone who’s faced discrimination for what sort of person they are, or watched others (such as their children or clients, given that I know a lot of parents and professionals read this blog) face discrimination for the same.
When did it hit you that this (an actual pattern of discrimination, etc.) is what it was? As in (any combination of the following, or anything that seems related that I’ve forgotten to add, and switch the questions around to be about another person if you’re not thinking of yourself here)…
…that it wasn’t a bunch of isolated incidents of injustice or unpleasantness?
…that it wasn’t your fault, or something to do with you alone?
…that there was actually a pattern to this?
…that it was actually real, and not imaginary or in your head?
And what thing(s) made you realize this? (Which could be sudden or gradual or combinations of both, or anything else.)
I’ll answer this as well:
For my part, it’s hard to say exactly what all the little pieces were that I started with. I knew certain things were wrong, or that they ought not to happen. And then I gradually got used to them happening, and happening to me, as something inevitable. But I’m very certain of the two things that made it stand out to me.
The first was that as I gained more precise communication, and was finally able to put huge amounts of my actual thoughts together into words on a regular basis, and really have that be a more or less stable ability, and also gained a lot more self-awareness, and a lot of other things… it still happened. People still treated me badly. I had decided at some point in the past that the only reason people treated me badly was either because I was having a hard time communicating (at best), or I was, in my efforts to figure out what exactly I ought to say, communicating things that were untrue (at worst). I thought that if I were able to say exactly what was truly inside my head, things would be better. And they weren’t. It had been something I experienced as a drastic change, but some other people didn’t, or didn’t see it as enough of a change, and some even (to my immense surprise and disturbedness) told me that they liked me better before. (As in, back when whether what I said bore any resemblance to my thoughts was random and barely if at all under my control. To hear that they liked me better like that was a massive shock.)
The second thing had to do with people I looked up to a good deal. At the time this realization was going on, the people that come to mind are Jim Sinclair, Cal Montgomery, and Laura Tisoncik. I had varying degrees of actual communication with them (and varying degrees of conflict, for that matter), but they were all people who impressed me with assorted combinations of integrity, clarity, honesty, and wisdom, and who had a lot of influence on my understanding of things like disability politics.
So here were these people I thought of as some combination (different for each) of strong, clear, wise, competent, of good character, and all these assorted positive things that I did not at the time believe possible for myself even though some of them kept telling me they were possible for anyone.
And then I saw them talk about getting all the same sort of discriminatory bullcrap that I got all the time. And I saw them talk about being treated as inferior, worthless, pointless, empty, stupid, dead, and whatever other ugly stereotypes can be conjured up.
And that’s what it finally took for me to put it together, that when I was treated that way, it wasn’t because of something I did wrong. That I’d be treated that way even if I wasn’t the colossal screwup I believed myself to be. (And that maybe, possibly, I wasn’t so much of that as I’d thought.) I somewhere along the line had internalized the view that all these things happened to me because I must be inferior, worthless, pointless, empty, stupid, and dead, not to mention a whole lot of other things.
So it was the combination of changing a great deal internally but still meeting with the same old crap all over again, and watching people I admired for all sorts of traits I didn’t think I had, getting treated the same way. And that’s what made me grasp that something was going on beyond just me being a failure and getting what I deserved. Like so many such realizations, in hindsight I had all the pieces of it, but I hadn’t put them together yet, or if I had they hadn’t come together in any permanent fashion. And those two things were what it took for me to finally get it.
By the way, Dave Hingsburger wrote a way more intense version of assorted political realizations around disability, called Mourning Has Broken. When you follow that link, be aware that there’s one word written as “chickens…” that makes no sense unless you know those dots are in there to blot out “chickenshit”, and the sentence makes absolutely no sense without knowing that. This was written when he was a non-disabled staff person. (He’s now a disabled staff person. And a prolific blogger, who blogs here.)
I think I first read that article in an issue of Mouth Magazine called Waking Up. And I guess “waking up” is exactly the sort of experience I’m asking about in this post, because I’m curious how, when, and whether it has happened for other people. (And it doesn’t have to be specifically about ableism, either, just anything similar. Nor does it have to be specifically about the exact questions I asked, just anything similar there too. I’m not at all able to cover all possible bases so please fill in the blanks — or not — as you see fit.)
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.
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.
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’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.
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.
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.
