Excuses to be a jerk. (for BADD)

Standard

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

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

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

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

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

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

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

Some Of How I Notice Other Autistic People

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How Other People Often See Us

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

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

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

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

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

And we’re that other weird person, too.

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

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

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

We’re just plain weird.

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

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

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

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

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

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

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

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

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

Disability Stereotypes

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

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

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

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

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

And then… cognitive dissonance.

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

People already have these ways of relating to us.

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

And then it turns out… we’re autistic.

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

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

Some people will at that point apologize.

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

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

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

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

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

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

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

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

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

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

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

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

We can just watch it happen.

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

I’m sure there are other things too.

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

And they then continue it.

And people then continue to use it against autistic people.

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

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

54 responses »

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  2. Who says autistic people don’t have a sense of humour? I particularly laughed at the “Hillary Clinton look.” Good one!

    I don’t need to blog about disablism. You’ve done it. I am printing this post for Adam to read when he grows up.

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  4. I want to thank you so much for this post. It confirms all of my feelings about the “instinct” that someone else is autistic. Both my son and I are Aspies, and we just “know” when someone else is. I just didn’t know how we knew. I love this blog. Thanks again.

  5. “most people don’t seem to think of autistic people as autistic people.”

    It may be that most people aren’t aware that a person is autistic unless they are told so.

    I’m thinking about how this non-awareness relates to attitudes to other differences. Such as towards black people in a mostly white town, towards gay people, towards disabled people.

    White people who have what they call a “colour blind” attitude claim not to see that someone is black, for example. They claim to look beyond skin colour. That is the classic liberal attitude, but it means denying the reality of the black person’s skin colour and identity.

  6. I get comments alot of not “really being autistic”

    Here is the last one I got:

    “i very much doubt you have autism, and if you did, why would you tell everyone about it? dickhead.”

    They think I do videos so I dont really have autism. I cant even cook. I would not mind a few comments like this but I get alot of them and it gets depressing. They dont even know me and what my daily life is like or my history.

    I also do the walk with my arms up to my chest. I get stiff in movements and the only way to help with that is a med. that loosens me up some. Of coure they cant see that on a short vid. on YouTube. I repeat myself over and over alot to and also copy others body language. My roomate says I stem more but I dont always know it becuase I am not focusing on it.

    I get called retard, bitch, ect. Then told I am not autistic. Both extremes.

    Thanks for sharing and helping to raise awareness of the diff. ways we may present.

    Aspiegirl/Kathy

  7. I have been reading your blog for a while and really appreciate when you make posts regarding autism in general.

    I’m just becoming a teacher and hope to work with those who have diverse abilities. I really feel that when I read how you feel others perceive you, I am understanding more and more about the world and those who have autism.

    Anyways, thank you.

  8. On the subject of Autistics and speech, specifically relating to modulation and rate of speech and then intonation this triggers some very old memories. I remember first your oldest brother who did as a toddler have some single words in his vocabulary but also had this rush of incomprehensible jibberish that we finally realized were words jammed together in long strings at an extreme speed…..Our tact was to figure out the words….one by one…and repeat them to him slowly….and in this way he gradually learned to slow down…repeating the words back at a slower and slower rate until they matched ours. Throughout the years he tended to over modulate…and I remember his being unaware of this high volume…and we would constantly remind him to speak quieter..which always worked for a while…Your intonation came across as a British accent….and I remember people asking you if your parents were from England and seeming confused that they were not. I noted observing on the Autism Day broadcasts at least one other young Autistic with a strong English accent and their parents did not have one…Of course I have no way of knowing if there were other influences there..
    I also remember your lack of ability to reproduce certain sounds and the years of speech therapy….

  9. Thanks for this. I notice the video in the middle is no longer available – not sure if that’s something you chose.

  10. I’m only partway through reading, but wanted to comment with a current and gigantic example of why this topic is extremely important…

    Here in the SF Bay Area, we just had a long trial for a guy called Hans Reiser who was accused of murdering his ex-wife, even though there is no body, little-to-no tangible evidence that he actually did anything, he’s known for being very calm, and there’s at least two witnesses to where he was when she vanished. Normally it would be easy to defend against, but as the defense eventually confirmed, Reiser is clearly autistic/AS — so he was arrested & convicted because of all the things he did that would be normal for one of us but that could be construed to suggest guilt in a NT! (It was just like the old case Frank Klein reported about an autistic kid being falsely accused of abusing a dog.) In keeping with what you said, a frequent comment was that people couldn’t believe that somebody so intelligent (he was a Cal freshman at 15) would do such “dumb” things that “anybody” would know would make him look guilty. Same complaint many of us have heard from our family if we’re supposed to be “smart”, of course.

    So it looks like we’ll never know what really happened. I am hoping he did kill her, because I feel physically sickened when I think about someone innocent being convicted because they’re autistic (reminds me of back when a woman being attacked/killed was always blamed on a black man), and not happy to think the real killer might still be lurking about if she really is dead. If I had the energy/focus, I’d write a blog entry demanding to know where the high-profile “autism awareness” campaign was during their own Autism Awareness Month when a guy’s autistic traits were being misconstrued by prosecution & the media as signs of a cold-blooded killer. (Of course, I know that the reason they weren’t active is in large part because he was successful, not someone they could depict as being a monstrous drain on their family & society. I’m kind of hoping someone else in the blogging arena tackles the topic.)

  11. I’ve heard things like that about myself, too, that thing about “You’re too smart to do things that dumb, things that you know look really bad, unless you were guilty of (insert thing I’m not actually guilty of).”

    Well, actually, no. I don’t know what will and won’t “look really bad,” nor do I tend to give that a lot of thought, considering that I’m not actually guilty of any crimes, and therefore shouldn’t have to be concerned about whether something looks like I am (to some distant observer with only minimal actual knowledge of my life and too much time on their hands, of course).

    I recently got told, for instance (by an online friend), that I “had to admit” that the ability to sing without the ability to hold a conversation in speech looked suspect, and that I therefore had to admit that I owed the world an explanation now that he’d “discovered” I could sing.

    To which my response is several levels of WTF, given that I’ve made frequent reference to that ability online, including in a page titled “Disclaimer on Assumptions” that is perpetually linked from the front page of my blog, as well as in conversations in several blog entries and other places, and one instance of my singing (in words, which apparently makes some kind of difference) actually being audible online. I’m actually quite baffled by what I’m supposed to do when I put something up front and center almost, and hear that I’m hiding it.

    I’m doubly baffled by the idea that I owe the world an explanation for being autistic (i.e. for having unusual patterns of ability), when nobody else seems to be expected to owe the world such an explanation, and when the skill of repeating memorized sounds with tone and note and phonemes and everything already pre-laid-out, is so obviously different than the skills involved in having a conversation by speech, which require a good deal more skill in coming up with language on the spot and then repeating it out loud while simultaneously juggling other people’s responses and translating back and forth between speech and thought, all at once. Seems obvious to me which one is the easier task anyway.

    And triply baffled by the idea that I should be running around presuming that I need to watch my every move against the possibility that it might “look bad”.

    But that’s the sort of thing I mean. First off, the idea that I should either hide this sort of thing entirely or explain neurological theory I don’t even understand to everyone who is startled by it, and second off the idea that I have been somehow hiding this.

    I suppose next someone will get excited about the fact that I’ve been seen walking at some conferences and using wheelchairs at others, or, worse, the fact that I’ve gone from a total motor freeze to breaking into a run before with no midpoint possible.

    I guess at this point I should quote Cal Montgomery on the topic of “invisible” disability (which she thinks is an inaccurate and somewhat dangerous word for it, given that it takes invisibility as a given and as residing in the disabled person somehow, rather than in the familiarity of the observer with different sorts of disabled people).

    In the disability community, we speak as if some kinds of disability were visible, and others weren’t. Let me suggest a different approach: think about the ways different kinds of disability have become more familiar, and more visible, to you as you’ve gotten to know more disabled people.

    When nondisabled people look at “the disabled,” they see wheelchairs and picture-boards. They see helmets and hearing aids and white canes. With a few exceptions, they don’t pick up on how individuals differ from one another; they notice the tools we use. And these tools, to the general public, equal “disability.” Venture out without a well-known tool, and your disability is “invisible” or “hidden.”

    But the tools are only the first step to visibility. The second step is the behavior that is expected, given a particular set of tools. The person who uses a white cane when getting on the bus, but then pulls out a book to read while riding; the person who uses a wheelchair to get into the library stacks but then stands up to reach a book on a high shelf; the person who uses a picture-board to discuss philosophy; the person who challenges the particular expectations of disability that other people have is suspect. “I can’t see what’s wrong with him,” people say, meaning, “He’s not acting the way I think he should.” “She’s invisibly disabled,” they say, meaning, “I can’t see what barriers she faces.”

    Why, you might ask, do I even bring this up within the disability community? Although we may understand disability differently than others do, we have not, as a group, abandoned the suspicion of people who may not be “really” disabled, who may be “slacking” or “faking” or encroaching on “our” movement and “our” successes. And we respond to people who challenge our ideas of what disabled people are “really like” just as nondisabled people do: with suspicion.

    (From A Hard Look At Invisible Disability)

    So… yeah, I suppose we should all “know better” than to “venture out into the world” with a pattern of abilities and difficulties that hasn’t been okayed by some kind of disability stereotype police.

    But I think the world is a whole lot more interesting without disabled people all squeezing ourselves into the tiny and narrow space alloted to disabled people in the viewpoints of people (disabled or non-) whose heads are full of stereotypes.

  12. I speak in a monotone, have what you call immediate echolalia, don’t maintain eye contact, and seem to be able, after I’ve had enough exposure, to adopt the accent of whatever group of people I’m among. So I’ve been told I have a Southern, Boston, New York accent. But in reading aloud I erupt into a strong Boston accent, which is where I was born. I stim, but not usually when I’m in the presence of customers. (Coworkers and family is a different story.) Being on the sales floor apparently keeps my mind challenged in ways that minimize the urge to stim.

    I have worked in retail the last several years, and the autistic people I’ve noticed I’ve done so mostly because they speak in a monotone, have (compared to NTs) a blank facial expression, and in two instances, keep on and on about a single topic.

    And finally, offtopic, but I thought this story deserves some attention:
    http://www.examiner.com/a-1347693~Baby_snatching_by_Arlington_County.html
    As best as I can tell, the child was taken because the mother committed the crime of being autistic.

  13. Wow! Just wow! So much to take in and so much fabulous information here. I’m going to have to come back two or three times to soak it in.

    Thanks so much for writing this today!

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  15. Really interesting. I came here for BADD, and I’m definitely going to have to come back and re-read to digest this all.

    Something I find really upsetting is that, at my university, a lot of people have the opposite of the “you’re not autistic, you’re just socially awkward” reaction. If someone is shy, awkward, not particularly gifted in social interactions, or lacking in tact, nine times out of ten, people will say, “well, they probably just have Asperger’s, so what do you expect?” Of course, it doesn’t really work very well when people who don’t actually know anything about autism beyond what they’ve read in People try and diagnose someone they’ve only had a single conversation with. But it’s becoming so widespread here that AS *is* becoming a synonym for “being a jerk,” which then feeds back into the attitude you described so well.

  16. takes us time to figure things out too. Liked your video……very informative……..I honestly was fascinated by it…..not like “oooh look at her” kind of thing…….I just was watching you move around…..my favorite part was the rocking part because I love to do that too……..I need to, and it feels good. Like relaxing.

    I didn’t laugh at all at the video but I DID LAUGH AT the Hillary Clinton statement……………HA HA HA!!!!!!! because it’s true………..

    she is totally pandering. It’s disgusting really.

    I wanted to write for this but didn’t have time today…….for BADD I mean………see can’t get words out always the first time…….

    sad Athena going to bed. I lose a kitten I rescued….she got upset with me and took off……I hold her too much maybe…….hope she is not mad tomorrow…….

    goodnight

  17. This should be required reading… I think for just about everybody, but particularly for people who expect to interact with autistic people a fair amount of times (such as teachers, parents, professionals, healthcare people, people who work in offices, etc.). It describes so many things, and eloquently to boot! I have at least three blog posts swirling in my mind waiting for the right words to float by…and for my exam tomorrow to pass so I can have a little less of this craziness going on. Especially since I just realized that the assignment I was trying to think of what it is for the last six hours is and that it’s due in seven hours.

  18. The basis of much disability policy is that disability should carry a tremendous amount of economic disadvantage, because otherwise people would falsely claim to be disadvantaged and wouldn’t work in paid employment. But if all workplaces were fully accessible in accomodating all types of disability, and no employers were prejudiced against employing disabled people, very few non-disabled people would claim to be disabled.

    Autistic people are fine if we are cute, dependent, helpless or docile.

  19. This is an utterly kickass post. It deserves more response than I can muster at the moment.

    Re: singing versus speech, I believe anyone who has had even the most elementary training/experience with language deficits of any kind can tell you that it’s very plausible and common for folks who have difficulty with speech to be able to sing words quite easily. (I knew a guy who stuttered — a lot — but could sing a flawless rendition of “It’s the End of the World As We Know It (and I Feel Fine)”.)

  20. Yeah, the guy people always bring up around me is Mel Tillis, who is a famous country singer who had trouble getting into his own concerts sometimes, because he stuttered so badly when asked his name by the security guards, that he couldn’t always even say it. Definitely different tasks, and often different parts of the brain.

  21. Great post, Amanda.

    I’m not “visibly” autistic to the average person, but my movements are generally quite awkward and uncoordinated. I often bump into people or things, not because I’m rude or not paying attention, but because my spatial sense sucks.

    A few days ago, I was getting off the (public transit) bus, and I accidentally bumped into this guy. I apologized profusely, and he was like “Whatever, it’s okay”. He the waited until I was walking away and pushed me. I didn’t fall or anything, but I lost my footing.

    Yeah, some people are total jerks. I saw that experience as a kind of disability-bashing, because even though I’m not visibly “disabled”, he and his friends saw an opportunity to humiliate me because I acted differently than they did.

  22. Athena: When I sat down in that video, the initial sitting down was actually involuntary, caused by too much leg pain. (I was on my feet for a lot of the video and forgot my ankle braces.)

    And then I did sit there and rock for awhile. So I decided, after I got up again, that I’d film myself sitting there and rocking (for a way shorter time), and then put that in between where the real video showed me sitting down and then getting up.

  23. Fantastic! You ought to collect this and various other posts into a textbook — to be mandatory for anyone who’s dealing with autistics in any capacity.

    Heck, stick it in the high school’s curriculum….

  24. Trouble is (and I am not going to philosophise or sociologise on this) sometimes jerks are just jerks, and to canonise every instance of autism as a get out clause not to be a jerk is the worst form of ableism there is, because equality means the right to be wrong and to be a jerk.

    Anyway I will tell you this about eccentricity and fooling, the concepts were well advanced in Shakespeares time, for Robert Armin wrote a history of fooling, that is to say one of the earliest historical treatises we have on the role of the professional jester. His contemporary “And let those that play your clowns speak no more than is set down” Will Kemp’s answer to that was his nine days jig, which survives to this day in the idiom “nine days wonder”

    Armin was a sophisticate and his roles as set down in Twelfth Night, Lear, and As you like it demonstrate very well the fools privilege

    “Wit, and’t be thy will, put me into good fooling! Those wits that think they have thee do very oft prove fools; and I that am sure I lack thee may pass for a wise man. For what says Quinapalus? ‘Better a witty fool than a foolish wit.”

    Those who take on the fools role had best know what they are doing, because it takes enormous skill to survive never mind the risk of never being taken seriously after that.

    I have the misfortune to be both a fool and a wise man, and I cannot say for sure whether it is a role I chose or one that was written for me by the cosmic scriptwriter.

    http://www.press.uchicago.edu/Misc/Chicago/640914.html

    As for Kemp, he the slapstick “zany” survives longer in our idioms than the remembrance of Armin, so it goes ……

  25. It’s true it’s an urban legend. There has never been a study or anything like that showing that people are calling themselves autistic when they aren’t. It actually seems very unlikely, given the downsides of the label, that people would do that on purpose.

  26. This post is amazing. I’m not autistic but my 8 year old son is and there are so many things that you describe that I can see in him. He is monotoned, but tries to make his language similar to others, which makes him appear fake when speaking.
    He also walks stiff like, which gets him teased a lot at school. Even the kids that know he’s autistic are just plain mean.
    His teachers think he CAN do all his work because he HAS done it previously, and when he refuses to, or says he’ll do it later, they blame him entirely. He hates certain things like writing words over and over, and when given this assignment has a literal tantrum about it, and his teacher and staff at his school think he’s just a problem child because they don’t understand autism like they should. (He’s in a special day class too which means the teacher is certified to teach him but still incompetent.)

    He has repetitve movements often times, and can’t sit still even when asked to. I’ve learned to ignore a lot of this but at school they make a big deal about it.
    He also laughs AFTER everyone else laughs, and he laughs really loud so everyone stares at him and then usually laughs at him as a result. He clearly doesn’t understand the “joke” he’s laughing about but wants to fit in so badly that he laughs anyway, but it’s delayed because he doesn’t pick up on when to laugh until he hears others.
    He also has issues with aggression, but with his tantrums it’s hard to figure out what triggers them, and again the school blames him entirely.
    Everything that is said he takes literally too, he does not understand sacrasm at all, which also gets him teased at school.

    His teacher, school psychologist, principal, VP…they all think he’s “Choosing to be bad”. They are so ignorant it makes me ill.

    I just wanted to say I really enjoyed your post and it confirms a lot of what I know, but also was a little bit of a glimpse into what I don’t know or understand (and can’t understand …not being autistic and all).

  27. Awesome post, Amanda.

    I knew an autistic guy whose voice had lots of emotional expression, but it was in the volume instead of the pitch.

  28. This post, and some of the comments (particularly the linked article about the autistic boy being falsely accused of torturing the dog), remind me of an experience (one of many over the years) I had back in 2005.

    Due to mismanagement of credit cards (by both myself and my mother, who applied for and received credit cards in my name that I had no knowledge of until after she maxed them out and I kept getting bills), I ended up having to file for bankruptcy in October of 2005 (October 16th, to be exact, at about 10pm), right before a bunch of bankruptcy laws changed. Then, in December (December 13th) I had to go to a public hearing with a bankruptcy trustee, to make sure I could do a bankruptcy (or something like that–I still don’t know what the exact purpose of the hearing was).

    As I did not know anything about this, and was very nervous and scared, I was likely being more visibly autistic than usual. When I went up to the bankruptcy trustee, he wanted me to say my full name and address so that his recording-thingie would have a record of it. (Why, when he had all the tons of paperwork, I don’t know.) So, looking straight ahead but not at anyone–I hate eyes and looking at eyes!–I said my full name and address. The trustee then accused me of being on drugs.

    At this pointed, I overloaded and meltdowned, crying tears I could not stop (even though everyone kept saying there was no reason for me to cry–this happens often, both the meltdowning and the crying…I think maybe they are connected somehow). My attorney (who was not a very good attorney, as he kept forgetting to file papers that needed filing, and so made the bankruptcy last over a year past when it should have ended) vouched for me that I was not on any drugs. (I was, at the time, on several legal medications for the bipolar disorder that a doctor insisted I had, which I do not; after over two years off those drugs I am still suffering from the side effects; it was illegal drugs, though, that the trustee was talking about.)

    Now that I know more about autism and AS, I do think that it was my autistic-ness that caused the bankruptcy trustee to inquire as to whether I was on drugs. At the time, though–and to a certain extent still today, I was very disturbed by the idea that someone could believe me to be on drugs when I was obviously (to me) not.

    Anyhow, I like this post and am glad you wrote it. It says very true things that need to be said.

  29. I’ve noticed a lot of the things you’re describing here as well. Especially the “people being surprised by stuff” thing. And when I was growing up, people were always going on about how my facial expressions and posture were somehow “off”.

    Still, though I have no idea how I actually “come across” most of the time. I think one reason it took me so long to be able to actually describe my internal states (and I’m still not always great at that) was because people did a lot of “telling me how I felt” based on looking at my nonverbals, etc. Only they were trying to map me to NT-space so it didn’t quite work, and hence I ended up without any accurate language for that kind of thing.

    I’m really glad to read things like this post because in some respects, they seem to reach me through language at a level that makes sense and helps me better describe my own internal states.

    …and on that note, something else I’ve noticed is that there are certain writing styles that seem fairly reliable “autie indicators”. I remember when I first came across stuff written by autistics online, I didn’t know it was written by autistics — all I knew was that I’d discovered writing that “felt like mine”. It was sort of unsettling at first, though not exactly in a bad way — it was more, to invoke an analogy, like suddenly discovering that I wasn’t the only person in a particular country who used a certain language dialect.

    And then when I started communicating with people who also used that dialect, communication felt qualitatively different from how it felt when communicating (or attempting to communicate) with others.

    It’s sort of difficult to describe exactly what I mean here, but I can say that autie-writing tends to feel a lot more direct than language usually feels. I also get the distinct sense that I know what the writer is talking about more often.

    It’s like sometimes another autistic person will make a connection between language and reality that makes sense to me, which then makes it easier in turn for me to discuss that aspect of reality.

    I’ve since discovered that there are a number of different “autie writing styles” and that not all of them are easily comprehensible to me, but they still stand out to me when I come across them.

  30. Because autism is shown by autistic people’s behaviour in the widest sense of the term, then those people who want to behave like a jerk towards autistic people can say that they are attacking their behaviour, for which they (autistic people) are responsible; not for something for which they are not responsible, such as skin colour or physical disability.

    I have not noticed the “Hillary Clinton” look on that woman.

  31. I found this page by one of those bizarre indirect link accidents that makes me love the internet so much.

    I’m not autistic and the only person I even know who is autistic is my young cousin I am not close to. I admit not until reading your blog — which is awesome — did I even think about this really. I apologize in advance for any unintentional offense my complete ignorance might cause.

    My only real exposure to my cousin has been that he does not speak much/well, rocks a lot, seems to need constant stimulus of audio/video, insists on bringing nearly everything he owns in bags with him anywhere he goes, and sometimes throws tantrums. Which in fairness, was less an issue when he was a child, than it is as a 350# 30 year old man. Being biracial and very “visibly” autistic in facial features, it is difficult for my aunt to take him places without reactions from those around. I know my parents were so embarrassed to be seen with him for a long time (but they were embarrassed to be seen with me when I was 20# overweight, so obviously they have problems unrelated to him. I think some people are so center-of-the-universe that they think anybody around them ‘reflects on them’, and they’re too insecure to let people be whomever they are without taking it personally).

    I hadn’t even known that a person could be autistic without it seeming “visually apparent” until maybe a year ago, when a woman I knew online (who had a habit of unintentionally pissing off people) said she was an Aspie and talked a little about it (and about why it had that side-effect sometimes). She is highly intelligent, had a good career in publishing, writes wonderfully, and I imagine nobody knew about this until she figured it out herself after retirement.

    My aunt once told me that holidays were hard because my cousin was always going to be about age 7 and want things that someone around 7-11 would want, but as he got older, family members seemed to lose interest in ‘treating him like a child’, since to them he was clearly not anymore. But he was never probably going to want a steakhouse dinner as a gift, or even be able to go to the steakhouse (with 11 hefty bags of his belongings…); he still wants crayons or movies, no matter how many he has gotten previously. It is very difficult for the family — there are several major dramas centered around his condition and care and aging and him living with my little frail old grandmother who is aging… the whole topic makes me kinda mad because I feel that what is best for him has never really been the focus, although I’m sure they would all argue that.

    His older brother got his master’s in counseling and has long worked at a residential care facility for people with significant autism, something clearly driven by his experience with his brother and his greater compassion and understanding about it.

    In what little thinking I have actually done about his situation, I had never before considered the issue that were he not so obviously, visibly autistic, if he only had a few of the traits, or a lesser degree of them, or something like that, it might be hard on him in a whole different way. I have known people — in fact, a LOT of people (I’m 42) over the course of my life — that have not just one, but a whole slew of the things you describe.

    My daughter (age 11) describes a girl at school who is almost a textbook case if your list is an example. Her exact words: “She talks about the stupidest things, I mean, and goes on and on, and she just doesn’t GET that people want her to shut up or are thinking bad things about her, and she laughs usually after everyone and way too loud, and she’s always moving in odd ways, and…” I talked with her about how autism was basically on a ‘sliding scale’ of totally variable degrees and details for every individual, and how even super intelligent, creative, even financially successful people can be autistic and it’s just that nobody realizes it, either because they can hide the signs in certain situations, or the signs are subtle enough to ‘blend in’ and be mistaken for other things. I emphasized that it was not about intelligence or creativity in most cases, and was no judgement of a person; some people are blonde or tall, some people are autistic or need glasses, whatever. She said that she’s pretty sure that the girl and everyone around her simply considers her “just a total geek”. Which made me wonder, while they are testing vision and hearing and for scoliosis, is there some kind of testing that can be done to evaluate something like autism in middle-school children? It seems like it would be a tragedy for a person and their family to go through life like that, when maybe understanding could greatly improve their resulting life.

    Recently my daughter told me someone asked one of her teachers what ‘bipolar’ was and she responded, ‘retarded’. I seriously wonder how we expect children to get educated when even teachers are so ignorant. My little girl is half Czech. Three of her teachers including one for history, had no idea where Czech was or anything about it. They have college degrees and teaching credentials. Go figure. And I thought my California schools were bad. This is Oklahoma and I feel like I’ve stepped back into the dark ages sometimes. I really felt for the commenter above whose autistic son was in school but surrounded by ignorance.

    I did have one thought while reading your blog post though. When people really try to fit in (and who doesn’t?), but only “behave poorly” as an effect of their condition, how are unlookers supposed to be compassionate and understanding about the fact they have some ‘invisible condition’? If I meet someone who is boorish and rude (as an extreme example), I am probably going to make some social judgement about that. It’s true if I knew he had some condition that this behavior was a side-effect for, I would probably be more compassionate and grant him a lot more slack. But how would I know? I don’t, and most people you meet in a social context, you don’t know.

    As a semi-unrelated aside, I used to work for a man who had something–today they’d call it extreme ADD–he was the most intelligent man, creative, in fact a brilliant inventor and the best salesman I ever met in my life–but he recognized this. So he hired detail oriented people to surround himself with and who could do what he couldn’t. He planned meetings in pieces. He had breaks and walks around the block during meetings so he didn’t have to sit/stand still for more than a few minutes. CEO in the Sears Tower at one point–I mean the guy was really good–he simply recognized that he was differently-abled, and it was quite literal in his case. He invented several fascinating technologies, was successful at everything he did, but he was definitely not “average”. Although close exposure to him for years had made me think about how people learn, communicate, and function differently (already a topic of interest as I was deeply studying hypnosis and communications for years), I’d never actually thought of this in the context of something like autism.

    I think I’m going to read more about this subject. I’ll be back to your blog for sure. Thank you for communicating about all this stuff. I feel like I just opened my eyes for the first time to something that is probably around me and I’ve just never known it.

    PJ

  32. Amanda do me the honour of letting a post through for once, you are not Kevin Leitch, who has seemingly in his pride and his prejudice instituted a permanent ban on any post from me. If those are our “friends” you don’t want to know the enemies.

    I am angry with you, I have issues to take against you over the representation of autism. Let us discuss them in a civilised way.

    You would not want to be me taking flak from all sides, take seriously what I posted about fooling, read the references. You have inadvertently condemned the eccentric as if I had any choice in the path I have had to lead.

    I wonder when the situationists of 68 wrote “sous les paves la plage” they understood that the foundations of every paving stone are made on sand for that is how you level the pavement.

  33. Good now do me the favour of not defending yourself before the attack, wait for the attack in good time cos I am not in any great hurry being concerned with so much else, IMFAR in a couple of weeks time for instance.

    My advice though if you want to mount a good defence, start reading up on neurology and stop reading Donna Williams.

    As for John Best I guess I ought to give up, except that it does not matter whether he ever changes his mind I am not sure that he can, but that a civilised debate procedes, at least as I envisage it, no insults, no four letter language.

  34. Okay, consider me completely baffled, because I don’t recall stopping any of your posts coming through, I don’t read much by Donna Williams (I certainly read far more neurology than I read of her writing), and I don’t know what you wrote about fooling or what references you made or even where you made them.

    Nor do I know if that’s “defending myself before the attack” or not, but I can’t very well do that because I’ve got no clue what I’m supposed to be defending myself against.

    If I’m doing something wrong, I want it pointed out in less cryptic terms than this.

  35. Larry said: Trouble is (and I am not going to philosophise or sociologise on this) sometimes jerks are just jerks, and to canonise every instance of autism as a get out clause not to be a jerk is the worst form of ableism there is, because equality means the right to be wrong and to be a jerk.

    I agree with this, and maybe you didn’t intend it as a direct response to Amanda’s post, but in any case I don’t see anywhere in the original post where autism was “canonised” or actually invoked as a reason/excuse for jerkiness that could not be challenged. Anyone can be a jerk, regardless of neurology, and based on what I’ve read of of Amanda’s writing, it appears she’s quite well aware of this. So I can’t exactly see what you’re getting at.

    (not trying to start trouble here or anything — just confused).

  36. Yeah, I’m kind of lost, too.

    I think some of it might be the result of thinking I’d actually deleted a couple comments for disagreeing with me, and that’d be even more off-pissing than the original situation, especially in light of having been unnecessarily censored on other blogs.

    (I didn’t censor anything, it just jumped straight into my spam filter for reasons unknown to me. It was actually really strange because there were two comments from Larry in my regular comment thing, and two in the spam filter, but I didn’t know the ones in the spam filter were there until I’d looked for them after realizing that something Larry said must’ve disappeared. I don’t know why two went one way and two went the other, but that’s how it worked, and I approved the angrier of the two sets first, actually, before figuring out what was going on.)

    But the rest of it…

    I know I’ve argued that too in the past, that autistic people can be jerks, that anybody can be jerks. And being autistic is no excuse, certainly, for being a jerk.

    I was, actually, responding to the prevalent stereotype in non-autism-related areas of the Internet, that nobody on the net really has autism (or sometimes it’s framed in terms specifically of Asperger’s), they’re just all using it as an excuse to be jerks and get away with it.

    Which, to me, is very similar to the stereotype of disabled people just being lazy people who want to scrounge benefits they don’t really need and who should just go out and get a job.

    Which is to say, it happens, but it’s not good as a stereotype.

    My observations of this were based on things like…

    …a friend of mine gets into these discussions, where she ends up taking something literally. And she seems to hang out in those parts of the net where that stereotype is really really strong.

    So then someone gets offended by her taking something literally, or even think that she’s making fun of them and just being a smartass.

    And then she’ll say “Oh, sorry, didn’t mean to take that literally just to annoy you. I’ve got Asperger’s, it’s how I relate to language, etc.”

    And then the person’ll say “Oh no you don’t, that’s just something people say as an excuse to be jerks.” And then will heap a crapload of verbal abuse on my friend.

    And I’ve seen it, way, way, way, more times than I’ve seen autistic people excusing being a jerk by “Sorry, I’m autistic, you can’t possibly say I’m a jerk.”

    But the stereotype is that the trend is in the opposite direction.

    One thing I was unable to fully explicate in my post, that maybe I should’ve, is that yes it’s totally possible for autistic people to be jerks, and being autistic isn’t an excuse for that when it happens.

    Although, I think I actually did mention it.

    But I was going to go into a whole long concrete example about it, and I just couldn’t.

    I also tend to assume that everything I write is only a part of something larger that I write all the time. I can’t possibly write all the ideas at once. Etc.

    I also, by the way, didn’t mean to say that all eccentric people are autistic. Just that “eccentric” is one of the labels we’re often given around people who don’t know we’re autistic. Not a bad or wrong label, just the thing that would be seen without the medicalized definitions and whatnot.

    And also, didn’t mean to say either that “autistic” is the superior way to view this whole thing, and definitely not that a medical way of doing it was the best way either. Just needed a way to say it concisely. Quite possible I picked the wrong words. Sorry about that.

    Anyway, I’m trying to write another post right now. My right arm is killing me. So I need to send this comment and get back to my post.

    And I’m not trying to start trouble either. Seriously. Just trying to figure out what, where, is being taken as meaning what else. Also, I can’t look up all the references being asked to look up, not a possibility, at least not quickly, and I don’t have the background to understand them, nor the energy to acquire that background anytime soon.

  37. Oh well at least that is out of the way so far as misunderstandings go. I have a mighty temper sometimes, and I guess I have just been spending too long supping with the ‘devil’ to contain it, I don’t think I have been using long enough a spoon.

    I do tend to be somewhat metaphorical in my writings and in particular I was picking up on the references to clown and eccentric. One of my favourite movies is Fellinis I Clone. I will be posting more about Circuses and the history of fooling on my blog when I get round to it, between all the other stuff I am writing up too.

    The clown can be a noble calling, but like many other professions one finds oneself in, it is not necessarily through choice but for survival and to survive at it, you have to be able to do it well, because audiences are fickle, especially when your clowning masks criticism within.

  38. The clown thing is something I’ve been thrust into before, sometimes unawares.

    Personally, I’m in a bit of a weird position. Because I know basically where my place in the world is on some fundamental level, that seems pretty obvious to me.

    But, at the same time, other people have other ideas of both where I am and where I should be, who I am and who I should be, and so forth. And those things, and navigating those sorts of waters, is not something that comes easily to me.

    Especially with language mixed in, and a lot of what you’re saying frankly evades me on the linguistic level. I don’t think about the world in the terms you think about the world in, nor do I have your expertise in some areas, so I don’t always understand the conversations. Words that are tangential to me (keeping in mind I write in chunks of them easier than iindividual ones) take on a lot of significance to you, and I’m sure vice-versa.

  39. My voice is often very brusque and emphatic, almost like Mexican telenovela actors at worst. Also, I’ve spent a LOT more time reading books than playing with other kids, so I talk more like a character in a book than a teen.

    When I make jokes, they’re in an intonation and context so bizarre-as you would expect from a pynchonfangirl-that other kids just ignore me (“Best not to get involved..”) Sometimes they actually startle.

    Good thing my little sister gets it. Without my family I’d have no one to talk with.

  40. Thanks for this! I am unofficially-autistic (I was assessed and basically told, well, you have plenty of AS traits, but we don’t diagnose it in adults – four years later I was diagnosed with ADD, but it’s pretty obvious to anyone who knows much about these things that a) they’re pretty closely linked anyway and b) I have both) and one of my very bestest friends is also autistic – a few months ago I mentioned to someone from work [who is a big jerk and does NOT have autism as an excuse ;) ] that said friend is autistic and her response was, I kid you not, “don’t be ridiculous, how can she be autistic, I’ve met her, she was communicating!” And when I told her *I’m* autistic, too… Oy gevalt!

  41. It’s well known that singing, even with words, is different neurologically than speech. Many people with terrible stutters can sing with perfect fluency (maybe they all can, not sure).

    I suppose it’s possible that *some* people online may lie about having Asperger syndrome so that they can get away with trollish behavior. I can’t see how anyone could prove it *never* happens. But I don’t recall ever seeing such a thing happen.

  42. Yeah. I’m sure that people who really are autistic sometimes use it as an excuse, because that’s just human nature: when people don’t want to face something, if they can find another way to think about it then they often will. But I don’t see that as the overwhelming majority, or even the majority, of times. And most of the time when someone’s saying “You’re just using it as an excuse,” it’s a situation where the person really wasn’t doing that.

    I’ve also seen a disturbing trend, among autistic people who have a really simplistic notion of what disability is, to, in their quest to say autistic people aren’t disabled, to instead declare that anyone who has more trouble doing something than they do, isn’t trying hard enough. Which gets old really fast if you have more trouble doing that thing than they do. To use an analogy I’ve used before, that’d be like me telling both a totally tone-deaf person and a person with a normal level of pitch perception, that they aren’t trying hard enough if they can’t identify a pitch the first instant they hear it (where a tone-deaf person would likely never identify it correctly except by chance, and a person with a normal level of pitch perception might be able to identify it but only after a pause — and in all of this I’m taking the word of the researchers who designed this study, so I could be wrong, but it seems accurate enough from what I’ve seen that there’s a lot of gradations of that ability just like any other ability).

  43. Pingback: Thinking About Autism « LBnuke

  44. I wrote a post (presently locked) in response to this one and I wanted to thank you for it.

    As far as I can tell, I’m almost-always-passing Aspie. Never been diagnosed (except with ADD), but was a textbook case in childhood and “grew out of” some of it (learned secondary social skills and/or methods of covering.) I have this weird clumsiness that goes away when I’m doing something focusedly hyperkinetic or something that involves all four limbs.

    THANK YOU for making it clear that not all autistic/asperger’s-spectrum people look or move like you do, or have trouble with the same things. I know a lot of folks look on your level of autism as the “face” of the whole thing and think that, well, Asperger’s/ADD/HFA/talkative types don’t stim or scramble up language noticeably so they must be faking it, and so it’s really important to see you speaking up about the range of diversity that gets lumped into this one set of things.

  45. I used to be far more able to either confine ‘stimming’ to private places or have it passed off (whether by me or someone else) as something other than what it was. And I used to be able to create speech that sounded “alright”, even if I didn’t always know what I was doing or saying or understand what other people were saying. And I’ve been in contexts where, even if I did look extremely strange, it was either put down to other things, or else everyone else was so strange they didn’t notice a difference. As well as in environments with bullies who really did go from constantly proclaiming my utter weirdness to constantly proclaiming my normality depending on which one served their purposes.

    Which is why I feel so strongly about people who divide autistic people into categories as if the lines can’t be crossed or combined in zillions of different combinations. I’ve always been a mixture of elements of the two major sets of stereotypes, as well as many things that adhere to no stereotypes at all. Which combination, or what my appearance is like, has varied a lot, as has the environments I’ve been in and expectations I’ve been placed under.

    And of course, as Larry has pointed out, there has become an entire media-influenced stereotype of my life that is often neither true to my life nor to what I myself would say of it. But despite it not being my creation, I’m expected to answer for it, especially if I don’t give my entire life story out every time I write something or talk to someone.

    (All of which is why I wrote this.)

    Not that this is all that unusual for autistic people (more like slightly, if at all), but then most people don’t know what is more or less usual for autistic people, they just have a fairy-story written in their heads telling them what an autistic person is and what our lives go like over time, even if the fairy-story doesn’t conform to the true diversity of autistic people in any way.

    But… yeah. I can’t dismiss either “obvious” or “non-obvious” (in quotes because so much of what is obvious depends on a person’s knowledge and context or tiny little details, at least as much as the appearance of the autistic person, something I’ve noted from observation of people’s reactions to me in different places) autistic people because I’ve been in both positions and I find that anyone who wants to draw a hard and fast line also wants (whether they know it or not) to, as a consequence, split me in half or chop my life up into little pieces and throw the pieces to two different sides of a line they draw in the sand.

    And since I don’t enjoy that process one bit… yeah. Can’t escape it though, it seems like. And while being on one side or the other (and the stuff that entails) is bad enough when it comes to people’s expectations, being on both or going from one to the other (in other people’s eyes) seems to have a shade of odd unpleasantness all its own.

  46. What I think about this, is that 1) There are a lot of kinds of behavior from “normal” people that can be as anoying as those that come from “unnormal” people. 2) In both cases, in public life, they must be tolerated. 3) But in private life, I dont have to tolerate any of them.

    Now, the problem is that most people dont make a difference betwen one and the other, they expect that their co-workers and people they meet in school should be their friends, or at least that those are the groups of people from where you should pick your friends.

    Excuse for my bad english, I´m a spanish-speaker.

  47. In her semi-autobiographical novel, ‘The Body’s Memory’ (1990), Jean Stewart describes the assumptions a woman discovers behind the questions of her social worker when she first applies for some ‘vocational rehabilitation’, that is, the money to buy a basic wheelchair:

    “(1) The client-applicant is ineligible for services until proven eligible. (2) The Client-applicant’s Vocational Goals are outlandish, greedy, arrogant, must be trimmed down to appropriately humble scale. (3) The client-applicant’s motive in seeking services is, until proven otherwise, to rip off the system. (4) The function of the agency is to facilitate (favorite word) adaptation (second favorite) of client to job (client to world), not the reverse. (5) The client is a fraud. (6) The client is helpless.”

  48. Pingback: Forum Politics and the NT-ocracy (rant) « Marquis de Saydrah

  49. This was a very interesting post. I don’t recall offhand how I got here, but it definitely gave me a lot to think about.

    I know I won’t always get dealing with people right, especially in areas of disability/neuroatypicality/what have you, but your post gave me more information to work with to try to get it right, or closer to right. Thank you for that.

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