The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs
This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.
Thank you for writing that. It’s really important.
Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.
Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.
So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.
There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.
In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.
I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.
And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.
Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)
Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.
I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.
And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.
I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.
Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.
It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.
And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.
The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.
That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.
What it really means:
“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”
They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.
They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.
They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.
They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.
They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.
They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.
They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.
I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.
Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.
All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.
And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.
I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.
I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.
I suspect the drive to say this about people comes from several places at once.
If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.
I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.
A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.
That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.
And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”
Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.
Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.
My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.
This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.
The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.
I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?
Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.
Except it didn't work out like that. At all.
My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.
And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.
Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.
From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.
So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.
Needless to say, my being alive at the moment owes a lot to coincidence.
They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.
No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.
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.)
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.