Monthly Archives: November 2006

Outgroup Homogeneity Bias


Someone I know was posting a bunch of common cognitive biases recently, and described something called the Outgroup Homogeneity Bias. Wikipedia says, “According to the outgroup homogeneity bias, individuals see members of their own group as being relatively more varied than members of other groups.”

This of course can be applied to all kinds of things. Right now I want to quote a few people, though. Keep in mind, the groups don’t even have to objectively exist, this stuff also applies to perceived grouping, is in fact possibly an artifact of perceived grouping.

Here is what Stephen Shore says about which autistic people he believes to be mostly alike, and which autistic people he believes show more variation:

The high-functioning Asperger portion of this syndrome has the greatest diversity in shapes because the variation in presentation along with the number of people with autism in this area is the greatest.

This is accompanied by a graph, as shown on this page (scroll down to the part called “The Autism Spectrum”). It shows an arrow saying “increasing variability of presentation”, where the “most variable” people (“HFA/AS”) are supposedly the “least autistic” people, and the “Kanner’s” people are more alike.

Then you have the exact opposite, as stated by Donna Williams:

As a consultant in the field of Autism for the last ten years I have seen many people diagnosed at both the Autistic and Asperger’s end of the spectrum. I have found that Aspies are a far more homegenous group than those with Autism.

Stephen Shore views himself as on the extreme “HFA/AS” end of the autistic spectrum. Donna Williams views herself as part of the “autistic” end of the spectrum. Stephen shore views “Kanner autistics” as more homogenous. Donna Williams views “aspies” as more homogenous.

And many autistic people seem to view non-autistic people as more or less homogenous, and vice versa. And, as I said, this applies to many other things. Sometimes, when you see a group of people (a real one or one you imagine) in your head, as all being the same, it’s because you don’t view yourself as one of that group of people, and you’re falling into that kind of bias.


Food for thought.


From On Women by Schopenhauer. Hopefully the relevance to disability is obvious.

These passages not only equate certain qualities with being a woman, but also equate those things with being inferior. Two-step process, at least, not the single-step one most people take it as. (I bet even Schopenhauer, for all his “great male reasoning,” didn’t entirely notice.)

Women are directly adapted to act as the nurses and educators of our early childhood, for the simple reason that they themselves are childish, foolish, and short-sighted—in a word, are big children all their lives, something intermediate between the child and the man, who is a man in the strict sense of the word.

Man reaches the maturity of his reasoning and mental faculties scarcely before he is eight-and-twenty; woman when she is eighteen; but hers is reason of very narrow limitations. This is why women remain children all their lives, for they always see only what is near at hand, cling to the present, take the appearance of a thing for reality, and prefer trifling matters to the most important. It is by virtue of man’s reasoning powers that he does not live in the present only, like the brute, but observes and ponders over the past and future; and from this spring discretion, care, and that anxiety which we so frequently notice in people. The advantages, as well as the disadvantages, that this entails, make woman, in consequence of her weaker reasoning powers, less of a partaker in them. Moreover, she is intellectually short-sighted, for although her intuitive understanding quickly perceives what is near to her, on the other hand her circle of vision is limited and does not embrace anything that is remote; hence everything that is absent or past, or in the future, affects women in a less degree than men. This is why they have greater inclination for extravagance, which sometimes borders on madness.

It is because women’s reasoning powers are weaker that they show more sympathy for the unfortunate than men, and consequently take a kindlier interest in them. On the other hand, women are inferior to men in matters of justice, honesty, and conscientiousness. Again, because their reasoning faculty is weak, things clearly visible and real, and belonging to the present, exercise a power over them which is rarely counteracted by abstract thoughts, fixed maxims, or firm resolutions, in general, by regard for the past and future or by consideration for what is absent and remote. Accordingly they have the first and principal qualities of virtue, but they lack the secondary qualities which are often a necessary instrument in developing it. Women may be compared in this respect to an organism that has a liver but no gall-bladder.9 So that it will be found that the fundamental fault in the character of women is that they have no “sense of justice.” This arises from their deficiency in the power of reasoning already referred to, and reflection, but is also partly due to the fact that Nature has not destined them, as the weaker sex, to be dependent on strength but on cunning; this is why they are instinctively crafty, and have an ineradicable tendency to lie. For as lions are furnished with claws and teeth, elephants with tusks, boars with fangs, bulls with horns, and the cuttlefish with its dark, inky fluid, so Nature has provided woman for her protection and defence with the faculty of dissimulation, and all the power which Nature has given to man in the form of bodily strength and reason has been conferred on woman in this form. Hence, dissimulation is innate in woman and almost as characteristic of the very stupid as of the clever.

It is only the man whose intellect is clouded by his sexual instinct that could give that stunted, narrow-shouldered, broad-hipped, and short-legged race the name of the fair sex; for the entire beauty of the sex is based on this instinct. One would be more justified in calling them the unaesthetic sex than the beautiful. Neither for music, nor for poetry, nor for fine art have they any real or true sense and susceptibility, and it is mere mockery on their part, in their desire to please, if they affect any such thing.

More on aspification.


Edit: Please read my prior posting on this and the responses. This is about stereotyping, not which diagnostic labels a person fits.

One of many forms that aspification takes in the autistic community, is a denial of the existence of autistic people who don’t fit the stereotype. The stereotype varies, but it’s there. This denial can come in many different forms.

One form I have seen is the response I’ve seen to me and to Sue Rubin. The two of us by the way agree on very little related to autism (I think we roughly agree on the communication issue, and the aversives issue, though), her notion that the attitudes of people like us are monolithic is a myth that promotes aspification in itself. Some people have stated outright that they don’t like her or me representing autism because we look too weird. We’re not normal-looking enough.

Plus, we actually talk about difficulties (some of them related to being autistic), that a lot of autistic people don’t want to handle the existence of. It upsets the idea that autism is basically, being a bit socially awkward and geeky.

So they come up with their excuses:

  • We look too weird.
  • We by merely existing show a negative portrayal of autism.
  • We have “other genetic conditions” that invalidate our stances on autism.
  • We have “co-morbidities” and that’s the source of anything they don’t happen to like about being autistic.
  • We’re just generally not flattering enough to the idea of autistic people as not really needing any unusual kind of assistance, and as being “nearly-normal”.
  • We promote the idea — by existing mind you — that you have to be really weird-looking or really “dysfunctional” in order to be autistic, and are therefore hurting all the “functional” autistics out there.
  • We’re retards. (I use that word because they mean it in the pejorative sense, not because I want to endorse its general use. I don’t want to mince my words here because they don’t mince theirs.)

Now, however much I dislike some of what she has to say (which is to say, a lot), these things are not the answer to an autistic person whose views you dislike, or whose existence is inconvenient to you to acknowledge. If you disagree with someone, you disagree with their views, you don’t pull the above kind of crap on them and make it sound like they shouldn’t even have their views. I don’t agree with much of what Sue Rubin has to say, but when it comes to being ostracized in sections of the autistic community because we’re not normal enough, I’m in the same boat as her and will fight for everyone like us (not that we are identical, but that we are lumped into the same particular group of people here) to be recognized as a valid human being with a total right to state her opinion.

Now, of course, her opinions do contribute to the aspification thing, from another side, ironically enough. She has stated that high-functioning people (her categorization scheme here) don’t want a cure, and low-functioning people do want a cure. She lists off a bunch of traits that she thinks create this dividing line (by her list, I’m on the same side of it that she is). And in this way she contributes to the idea that anyone who speaks out against the idea of curing autism, is in the category she calls high-functioning. Which in turn further allows the online autistic community — as well as most people in general — to basically assume that anyone who opposes a cure has a certain set of traits until proven otherwise. Aspification all over.

I’m also well-acquainted with the weird little trick pulled in some autistic communities, wherein people like me are trotted out as examples of “the non-speaking auties who agree with us,” but they at the same time totally ignore the realities of our daily lives, because they find this distasteful. They’re ready to say we’re part of their organizations, their values, etc, when it suits them to say so, but not willing to incorporate some aspects of our lives into how they think about autistic people’s fate in the world.

I’m well-acquainted in fact with being one particular community’s token non-speaking autie at times, while the day-to-day realities of lives like mine are barely acknowledged.

There was one conversation in which I discussed the state I ended up in while in an apartment with no assistance. That was, I could not coordinate perception and movement and all that very well, and ended up often sitting in my own pee, barely able to do a part of one thing in one day (with constant auditory prompting for each miniscule body movement), doing a lot of screaming and head-banging, barely moving anywhere, and certainly not cooking or eating or drinking water much, even if the food was very close by. I’d stated this as fact — it’s not a bid for pity, it’s describing my day-to-day life at one point. I had been describing this in conjunction with talking about going to an “autism support group” where I was told that all these things were, in fact, easy, and that I should “just do them”. I had been, in fact, trying to illustrate the disconnect between auties who can do certain things and auties who can’t do them, or can only do them with great difficulty. I want to emphasize, again, that I was not looking for pity, or sympathy, or any of that other crap, I was simply trying to describe how my days went at a certain point, and why I didn’t find certain “support groups” all that useful when those were my practical problems.

In response to these descriptions, one person (I’m not sure whether male or female on any of these, so pardon if I get people’s gender wrong) compared what happened to me, to an attempted suicide, and tried to say that I was in fact deliberately slowly killing myself by “refusing” to eat. He said that if I could type, then I could go through the much more complex process of making myself food. He said that in reality my problem was self-hatred: It is, apparently, self-hatred, to describe what you have trouble doing.

Another person insisted that I simply did not have enough willpower, and that the proper solution would have been apparently to let me starve until I figured out how to cook. (When in reality, it works the other way around: I can only learn if I’m eating enough, neglect is not remotely useful to me.) He said that regardless of how much I was attempting to do this stuff every day, that I was really obviously just giving up on myself and wallowing in self-pity. (So apparently spending my entire waking hours trying to do these things, is giving up. Yeah. Right.)

And someone said they were way too pragmatic and logical to ever end up like me… and someone else said that I was belittling their “more functional” life by claiming to be unable to do this stuff. (Well good grief, sorry I hurt your feelings by existing.)

So I wrote the following response (remember, again, my motivations are to illustrate, not to evoke pity):

First of all, my intentions have been misconstrued, so I’ll try to explain. I didn’t write what I wrote for anyone’s pity, not even my own. (I have to be pretty ruthless about self-pity, it’s a waste of energy and gets stomped out pretty much the moment I notice it most of the time. I don’t have energy to waste. And pity from other people doesn’t solve anything either and is fairly uncomfortable.) What I did write it for, was because these situations can become life or death, and because some people don’t understand that. Life and death are more important than my feelings, and more important than the feelings of someone who for some reason feels belittled by my descriptions.

I am sorry I lost my temper though in trying to explain this, I’ll explain why later further down towards the bottom.

The truth of sink or swim is that some people after a long struggle swim, and that can be great for those people. The trouble, is that some of them then assume that everyone should be dropped in the water, and that those who drown — maybe those with just a tiny bit less arm strength — brought it upon themselves. People who drown don’t need pity (their own or anyone else’s), or even emotional support of any kind, they need not to drown. (Whether that entails water wings, more gradual swimming lessons, a shallower pool, or in the case of people with aquagenic urticaria — a potentially life-threatening allergic-like reaction to water — not to get in the water in the first place.)

I worked long time to learn to type as well as I do, and to learn to communicate as well as I do. I, at my best, type somewhere in the vicinity of 130 words a minute. For some autistic people they will struggle equal amounts, maybe even far more than I will ever have to work in the entire time I type anything, in order to type three letters a minute. Some of them have probably worked longer than I’ve been alive, and harder than I’ve ever worked at the same task, to be able to do something a lot slower than I can do it. I don’t find this belittling to either me or them, or a sign of lack of determination in them.

Some things I try very hard and never come close to. Some things I try very hard and fall just short of. Some things I try very hard and excel at. Some things I excel at almost without trying. Which things these are, is going to be different than which things they are for some other people. This doesn’t bother me, that a person’s skill range in any given area is going to be different than another person’s. I don’t mind the things I am worse at, or the things I am better at, or think it belittles anyone involved.

I am saying this, because there’s a misunderstanding often when I say these things. About my motivations in saying them, and about my feelings about these things. I don’t feel the usual emotions people have around issues of ability, disability, whatever. I find that sometimes people project either their imaginations of me or their own emotions onto what I talk about, and assume, like my descriptions of parts of my life, that I’m talking about joyless misery and tragedy and things like that, and that’s not really the view I have.

I do take life and death stuff very seriously though, not only for myself (not even primarily for myself, at this point, because I’m not having to fight certain battles at the moment) but for other people out there for whom the price of the kind of misunderstanding in this thread is far higher, and yes on a life and death level, than it is for me right now.

So in the interests of education — and please take it as that — I’m going to explain why a person capable of logical thinking, and not even necessarily in any particular emotional distress, who has quite a large store of willpower, may still not be able to get to food when it’s in front of them and they’re starving. This is real stuff, it’s not exaggerated, what I’ve experienced is not even the most extreme version of what I’m going to talk about. I know autistic people who can’t volitionally reach up and scratch their noses, ever, and I usually can.

I don’t need your sympathy from this, but someone else may well need your understanding — not your warm fuzzy emotional understanding, but your understanding that they’re in danger and may not be as lucky as I was. So, please take this as educational information, if you really want to know.

At any rate, it goes something like this (this is going to be oversimplified, I don’t have all night):

Most people look at their surroundings and they see things a particular way. Like, a person with a different brain looking through my eyes would see, a computer monitor, sitting on a desk, with words on it, that they would proceed to read at least a few of without thinking much about it, etc.

Most people don’t even have to think to know where their body is. It’s just a given, and when they want to do something, they can pretty much get up and do it. If they cannot get up and do it, it’s because they don’t feel like it, or are afraid to, or other emotional reasons. If they do move in a particular direction, or do a particular thing, it’s mostly because they decided they wanted to and then did it, except that’s so automatic that they don’t even notice they’re doing it.

And, in feeling their body, most people can identify sensations like hunger, thirst, the need to use the toilet, etc, and of course since everything else works more (or less, but not so much less it becomes impossible) standardly, they’ll be able to do all that.

Most people also can hold thoughts in their head while doing all these things without the thoughts disappearing or getting jumbled.

Some people have some amount of difficulty with one or more of these things, but not so much that a serious amount of effort — sometimes over a long period of time — will not eventually let them do at least the basics in life.

I don’t have the most amount of difficulty possible with these things, but I tend to have more difficulty with these things than most people in the support groups I was discussing do. (Although I have more ability at these kinds of things than the worst of my records claim that I do.)


Before I put forth much effort, I don’t see much of anything. If I put forth some effort, I see shapes and colors and patterns, but I don’t see “monitor” and “words” and stuff. More effort, and I resolve the existence of such things, and even more effort, and I can read the words and stuff as something other than “gee, there’s words there”.

And similar levels of basicness go with all the rest of these things, including formulating particular ideas about the world and what needs to be done in it.

But it gets more interesting. Most people can get a little weird if they don’t eat, drink, or sleep enough for a bit. If I don’t eat, drink, or sleep enough for a bit, then the amount of effort it takes to do any of these things (“these things” being throwing together the building blocks of perception, reflexive thought, and action) increases greatly. So then I’m putting more effort out for less return, which makes me less able to do the eating, drinking, and sleeping stuff, which in turn makes my effort worth even less in terms of action. It’s like watching economic inflation happen within the course of three days or less, only instead of the value of the dollar dropping, it’s the value of some unit of effort.

This, of course, happens to even totally non-disabled people, too, but it happens much more slowly. In my case it’s helped along not only by the fact that I’m autistic but by the fact that lacking regular meals/water/sleep/etc are my main seizure and migraine triggers.

Now, the seizures were complex-partial seizures. That means that among other things I can carry out a purposeful-looking activity during a seizure, but I won’t remember it afterwards, and the activity will have something seriously screwy with it. It’s some kind of automatic movement, so it can be, my body will just walk up and open a door and walk back in the house and sit down, and then I’ll regain consciousness, but I’ll be more confused than usual and pretty much fall asleep no matter how awake I was previously. Or sometimes it’s just sitting there staring.

So that’s another part of many days we’re talking about there, that were being eaten up by seizures and subsequent sleep. (And if the seizures got out of control there were at times about ten minutes worth of them, or so I’m told by people who were there. And after something like that I needed serious reorienting, on the order of another half hour of repetition by someone else, just to remember my own name.)

And those are triggered in me mostly by lack of adequate food or lack of adequate sleep. (They’re also well-controlled by seizure meds at this point, but at the time I also didn’t have adequate healthcare.)

Then there was just the standard stuff.

Yeah, technically food was just across the room. But in order to even conceptualize the need to go across the room to get it, there’s a lot of things you have to know.

You have to be able to understand that something you can’t see (because it’s in a cupboard or refrigerator, or even just behind you) is still there. That’s at times an enormous leap of abstraction for me. (I eventually left packages of rice cakes and peanut butter lying around the house in strategic locations.)

You have to be able to identify the food, whatever it is, now that it’s lying around, as food.

You have to understand what the purpose of food is.

You have to understand the sensation of hunger as more than just an uncomfortable but totally inexplicable sensation, and you also have to be able to feel the sensation of hunger. (At that point I had untreated severe neuropathic pain, so my entire body felt like it was burning all the time. Hunger doesn’t always show up against that particularly well. I had no idea I was in pain, I thought this was just another inexplicable sensation that had always been there.)

You have to, in fact, connect the sensation of hunger to the need for food, and connect the concept of food to the stuff that’s in the house that you may not at that point be able to see (or identify, if you do see it).

And that’s all just to conceptualize the need to go over and grab the food, and this doesn’t get into how you ended up with the food in your house to begin with, or understood what food you needed to get, and it’s assuming a food that doesn’t require any cooking (which I didn’t always have on hand — my biggest supply of food was a giant tub of rice and a giant tub of lentils).

Now you’ve decided you’re going to grab the food. Then what?

You have to notice that you’re attached to a body that will be able to grab it for you.

You have to know which parts of that body are going to do the grabbing.

You have to figure out how to send a signal from your brain to these parts. And you can only really move one at a time. By one, that’s, like, one. (Or else you can rely on automatic movements, but that’s a different matter.)

So you’re ground control in your brain sending message to spaceship finger. Only, a lot of the time, there’s going to be static in the air or other interference, and before you know what’s going on, your finger either won’t move, or will move the other way.

Or else, you have to start from a bit of you that’s already moving automatically, and then work your way down to the bit that you need to move. So, if your finger is twitching, you latch onto that. You work your way, literally inch by inch, up your arm and other parts of your body.

But now you’ve got this shoulder, and that’s what you’re trying to move, that you’ve got sort of banging up and down but you can’t get it to go side to side.

So you start working on side to side and the up and down part stops working.

And then, if you ever get the whole arm going where you want it to go, you have to calculate a bunch of stuff about where exactly you need to put the arm in order to push down so that you can stand up.

And then you push up, and instead of just standing, you end up running around the house in circles on autopilot, and literally bashing into walls in the process. (This is an automatic movement — you started it with a voluntary movement but then the autopilot movements got control.)

At which point you forget exactly what you were trying to do to begin with, so you run around for awhile being confused and getting out of breath and such.

You realize somewhere along the line that you’re hungry, and that entire first set of things I described plays out all over again, only at this point you’re running around the house because that’s what your body is doing on autopilot while you’re thinking.

You realize the first thing you’re going to need to do is stop.

It takes awhile for the signal to get to your body, but when it gets there, it really gets there. You’re now kind of stuck in one position.

So now it’s back to moving one bit of your body, then another, then another. And when I call this an inch by inch process, and a gradual one, this is again no exaggeration.

You do this in various bits and pieces, and you’re kind of alternating between not moving much at all, and starting a voluntary movement only to have it transform itself into a repetitive and involuntary movement, or else a strung-together bunch of automatic movements that you attempt to ride closer and closer to your destination.

Meanwhile, all the focus on moving your body both drives out all your other thoughts (including what you were doing to begin with) and any focus on the sensation of hunger that would otherwise make returning to those thoughts a more rapid thing (provided the sensation could be deciphered).

This can continue for hours.

Any time a seizure happens, you can lose a few more hours in some combination of disorientation and sleep.

You start ending up with other problems, too. Like, after you are hungry enough, the world starts looking even more distorted, and occasionally seems to tilt sideways on you, and you fall over. And then you have to figure out how to get yourself off the floor, once you figure out that you fell over and figure out what a floor is and all that kind of thing. At which point, again, you’re going to be forgetting you’re hungry, and again, whole initial process repeats.

There are almost no photos of me during this time period (because I was very isolated), but people who’ve seen them say I looked anorexic. Except, I wasn’t anorexic, I was just capable of getting lost from one end of a room to another and of forgetting about what hunger was and stuff like that. I had no shortage of hunger, or even willpower, but in order to act on all that willpower, you have to have a place to aim it, and you have to be able to remember what you’re trying to do. I could remember exactly what I was trying to do, as long as I didn’t move or start thinking about anything else.

And there was that whole jumble of understanding what’s going on, and then understanding what to do about it, and then understanding what to do about it with the specifics of body movement, and then prodding my body into that kind of movement, that got very disorienting after awhile, and did often end up with prolonged shutdown and seizures and so forth.

And the less food you have, the less energy your brain has to think with. And since most of my problems were thinking problems (or more specifically “thinking of all these things at once problems”, is a shorthand way of putting it), this just meant things got worse and worse, until I was at the point of serious perceptual distortion and physical collapse and so forth. (These things will happen even to a non-disabled person who is malnourished enough, it’s just easier to bring about in someone who’s already having trouble with some kinds of thinking.) (Oh, and also, I had two enormous bins of dried food that needed cooking, that were my main food items, so most food was more complicated than the rice cake scenario.)

So, what often happened, was I had a choice. I could spend all day doing this sort of thing, to get some food to eat.

Or I could spend all day doing this sort of thing, to get some water.

Or I could spend all day doing this sort of thing, to use the bathroom.

In the real world, it was of course a blend of the three, changing a lot of the time, and leaving none of them done entirely properly. Focusing on eating meant I didn’t have that energy to focus on toilet stuff or water stuff. And same with focusing on any of those things.

And in the real world there were even more factors than what I have described. My mind encounters walking across a visual barrier almost as if it’s trying to walk through a wall, it’s very difficult and uses more effort up. The more cluttered and chaotic my place became, the harder it was to move around.

I did in fact crawl around a good deal (especially when I couldn’t stand without falling over), but even crawling takes a good deal of effort. And walking was an automatic movement, so sometimes I would get interrupted in a standing-up movement to go run around the room until I could throw the brakes on. (Sometimes the only way to throw on the brakes was to fall over and then crawl, actually.)

This was not a particularly healthy way to live, but I lived that way for quite some time, during which it just got more and more difficult because I had less and less food and such. I had kind of barely enough to live on and not enough to sustain a brain very well.

So put the support group into that scenario, and it entailed attempting (badly) to explain what was going on, not being understood and/or fully believed, and hearing advice that was — yes, sometimes well-intentioned, but often just as incredulous and confused as some of the people here, and even when it was well-intentioned, it was not particularly practical or was already being implemented.

It was a couple hours drive each way, and an hour of being around overloading people giving advice that was (whether meant to be or not) not very practical, and also of a very support-group mentality which seems to mean not a lot of practical support but loads of words of emotional support (I wasn’t looking for emotional validation — then or now, I might add — I was mostly looking for food and ways to reliably get food).

So that meant five hours of overload and unfamiliar surroundings, and a few hours recovery time, in a day when it could take me upwards of six hours to get a few bites of food, and none of the advice I was being given there was useful enough to take all that time out for it. And there wasn’t a lot of food there. Or ways to get food. (Did I mention, food. Wink )

So it just wasn’t worth it. Pure cost-benefit analysis. It’s sort of like someone who works long shifts every day of the week (to be able to barely afford rent and food in the cheapest ways they can find), and who barely has enough time left over to eat and sleep, being expected to go to a support group about their situation. Even if the support group were totally excellent — and few are that amazingly excellent — they could lose their job, and their home, and their food, if they kept going. There are people in the world who honestly are unaware that some people’s work situation looks like that, but the work situation remains the same whether others notice it or not.

I was dealing with a situation where my equivalent to that “work situation” was working nonstop (while aware enough to do so) at getting things so that I could get the bare minimum of survival needs done, and they might not have even sustained me much longer than they did.

For what it’s worth, I’m in a much better situation now, and I’m capable of what seems like a lot more:

I can go to the refrigerator most of the time when I try to.

I can go to the bathroom much of the time when I try to, and in the right location.

I can often use a microwave to warm up a meal, and then eat it.

I’m still working on the water.

I can do all of these in the same day most of the time, and I can even have a fair amount of energy left over for writing.

There are a few reasons for this.

One is that I live in an apartment where the floors are almost totally uniform. I do not have to cross lines anymore to get where I am going, and my body no longer has to push as if pushing through walls.

Another is that my neuropathic pain, seizures, and gastritis, and tons of other things, are more or less successfully treated, and so are the recurrent urinary tract infections I used to have when in that pretty bad living situation, and the cold urticaria is totally gone. (These were treated as a result of both later gaining access to better medical care, and also the fact that I figured out much more both about communication and about how to feel certain things in my body than I knew at the time.)

Another is that in the course of all that medical stuff, I finally (and very easily, it turned out) got prescribed a wheelchair for the motor problems I had. This means that I only have to move a few portions of my body in order to get anywhere, instead of having to coordinate them all at once and balance at the same time. It also means that the visual barriers are less of an issue even when they are there.

And, I have an apartment that is accessible to wheelchairs now, so I can move around it. (I used to have a wheelchair but still couldn’t get around my apartment in it so it was kind of useless indoors.)

And I have a significant amount of help doing the basics, which frees me up to do other things as well, and means that I don’t run into the vicious cycle of only being able to do bits of one thing, which means losing nutrients, which in turn means being able to do less, which means losing even more nutrients, etc. (Trust me, there’s only so much a brain can run on limited nutrition.)

This all means that I am a lot more active now, and a lot more capable of a lot more things, although not infinitely so. It should be noted that the amazing gains in my ability include being able to open the refrigerator, microwave things, and use the toilet. Complex cooking skills are still pretty far out of reach.

And if you take away even one or two of the things I mentioned that have changed, then it goes back almost exactly how it was before. I truly do work to maximum sustainable capacity though, it just looks like less because it accomplishes less outwardly.

I hope that explains things, and I certainly am not trying to belittle someone else by this, any more than I am belittled by people who assure me that they are working as hard as they know how to type a few letters a minute and still can’t dress themselves. But to them, as to me, this becomes a life and death matter when it is not taken seriously. That is why I have gone to quite a lot of trouble to explain it in detail to people who have been confused by it. If I have gotten somewhat short-tempered, it’s because I care about people whose lives depend on people understanding that intelligence does not mean ability to grab food when they need it, and two of my best friends in the world have nearly died over misunderstandings like this, one of whom is still in many ways at risk of all this.

Although I do wonder if people here had really been at that conference I was at recently would have answered a lot of people’s questions. I look and move (by most people’s stereotypes) like someone who would not be expected to read or write one word, let alone this, let alone cook, etc. (Even when I was trying my hardest to pass, and thinking myself successful, I was surprised when people referred to me as looking “low functioning” or “severely mentally retarded” — their words, not mine.) My appearance tends to startle people who’ve read my writing almost as much as my writing startles people who’ve only looked at my appearance. Wink

In all seriousness, I probably look like that because of how little of my body I can move voluntarily at once (as well as the things my body does involuntarily), and that lack of volitional movement (as well as thought, perception, etc, which are all tied together) is why I have had so much trouble doing things like getting food. The only reason I startle people is probably because they oddly associate that level of perceptual/motor weirdness with lack of thinking (even the degree of laziness mistakenly ascribed to me on this thread can’t cause the kind of appearance I have, so my appearance is too unusual for lack of effort) — all the thinking and effort and so forth doesn’t make the perceptual/motor weirdness go away.

I am highly pragmatic too (someone said they were too pragmatic to end up in a situation like this, which I assume means they have a more obedient body as well), which is why I found much of the discussion perplexing: Ignoring the fact that my body works like this would be one of the least pragmatic things to do in this situation, and I learned that one through trial and error.

This illustrates, though, the total disconnect that exists in this community. There are people who can do all these things, some with lots of effort, some with very little effort, and assume that anyone who cannot do them isn’t trying, is depressed, is self-hating, etc.

Note that I’m not talking about opinions here, again. I’m just talking about lives. Some opinions (including, IMO, some of Sue Rubin’s, such as where she talks about having nearly the worst possible combination of genes) really do stem from self-hatred. But simply having trouble doing something in a certain way is not self-hatred, nor is acknowledging what you have trouble doing.

Some people are so far locked into an idea that autistics are a certain way that they can’t even fathom the existence of the rest of us. So they find ways to write us off. We’re depressed, self-hating, experiencing co-morbid conditions, not really communicating, whatever, they find some way not to see that our way of being autistic is a way of being autistic as well.

People who think that if autistics just don’t hate ourselves, and don’t get depressed, and don’t have any “co-morbid” conditions, we’ll all be just fine, are not really working for the cause of autistic people. They’re creating an aspified autistic community that does both themselves and the rest of us an immense disservice.

Not seriously taking us into account, will undermine their credibility with anyone who actually knows one of the people they want to erase. It will drive away a lot of us who are like me in various ways. I’m stubborn as hell and that’s why I’ve stayed. I know people who’ve left this community for other communities where people at least acknowledged their existence, even if those other communities were into cure or other bad stuff. These are nice people who were not initially into the whole cure mess, but who got driven off by the whole aspification mentality. Then they themselves perpetuate that mentality by saying that the only anti-cure people are the aspified kind, and the destructive cycle goes on and on.

If you talk about not wanting to cure autistic people, but not actually wanting to provide any assistance to autistic people who need it, you’re not getting very far. If you want to just turn us all loose in the world with no extra assistance, a lot of us aren’t going to buy your line of reasoning. If you work so hard to prove how all autistics are “functional” like you (however you’re defining “functional”), and that our only problem is a lack of motivation or willpower, or the existence of other conditions (that are “bad”, unlike yours), you’re not going to win a lot of friends, we’re going to go off elsewhere, we’re (at least most of us) not going to support your movement.

Except for those of us who actually try to break into these places and carve a place for ourselves and those like us. But the fact that we are trying to break into these places that are mostly reserved for others (and this “we” is anyone who’s shunted off to the side by the mainstream of the autistic community, be that disability-wise, economics-wise, education-wise, or anything else) doesn’t mean we are lending our seal of approval to everything that these communities do to people like us.

It doesn’t mean, by the way, that every single one of us who claims this is going on, has a whole picture of what’s going on either — and some contribute to the whole aspification thing themselves — but you’d do well to at least attempt to listen to us. I know people who use the aspification in this community to justify torture and imprisonment for “low functioning” autistics — that’s not right, that’s not okay, not remotely. But don’t pretend aspification doesn’t exist, just because some of the people who mention it and make use of it are really crappy and misguided. Aspification weakens your standpoint, it does not strengthen it in the least bit.

It may be invisible to a lot of you when you use IQ levels as an insult, when you call people retarded or crazy (or any of a number of clinical terms related to same) as a way of dismissing them, when you go “We’re not like that” as if “that” is a bad thing, when you say that all these horrible things are bad for you but good for us. It might be totally fine with you to claim that some kinds of autistics are just plain not good enough for you, that you’re better than us, that you deserve to be seen in the company of people other than people like us. You may not even notice when you say these things day to day, but it’s sure not invisible to those of us on the wrong end of all this.

There are so many different ways of denying the existence of those of us who aren’t as convenient to certain narrow-minded versions of autistic “advocacy”. But as I said, aspification weakens the entire community, and people (including those of us who don’t fit the aspie stereotype all that well, because we can have our own versions of aspification among ourselves) would do well to make serious efforts to avoid it.

One good way to avoid it is to learn about the lives of autistic people that differ significantly from your own, and then not try to erase those people (no matter what kind of people they are) out of existence, and then try to apply your principles to the existence of all of us. No, this doesn’t mean you’ll suddenly want to cure us, that’s not what I mean. But you might get more of an idea of the more complex way a world will need to look in order for things to work out for all of us.

For instance, I may not have a job, but I have made a point of finding out about the various forms employment discrimination take. I wish more people who don’t need a particular form of assistance would still find out about it, rather than attempting to claim that nobody needs it. I wish more people who do need a particular form of assistance would find out about the lives of autistic people who may not need that form of assistance, but might need some totally different form. It’s really hard to take someone seriously as an advocate when they make generalizations that just plain don’t make sense.

It might also be good to take a look at the fact that autistics are only a small group of people within a larger world, and the way that all of us connect to that larger world. Learn about how human rights issues play out for people in general. Learn about the things the disability movements (physical, developmental, psych survivor, and otherwise) have already contended with, and don’t turn your nose up at them just because they’ve often turned up their noses at us. (That constant war of noses turning up against each other is one of the big flaws in identity politics — don’t participate.) Look at the bigger picture and our place in it.

At that point it becomes harder to aspify the world.

Help! Technical advice.


Update: For reference, it did turn out to be the mouse, and it works fine now that I swapped the mouse out. How a mouse did this, I have no clue.

This system is running Ubuntu, with a KDE desktop. It’s doing something very strange, and very annoying, that’s making email very difficult, hence this post.

The mouse will only click on things selectively. Right now, I cannot click on and run something from the taskbar, for instance. Within a particular window I open, I can either not use the mouse in it at all, or only use the mouse on selective parts of it. For instance, right now, I can only click in this part of the browser window that I am using right now. I cannot click in the line where you type in the URL. Nor can I minimize or close the window with a mouse.

If I go to the next desktop, and click “refresh desktop” using the mouse controls, and come back to this desktop, then the next box I click in becomes the only place I can click. For instance, if I refresh the desktop, then click in the line where you type in the URL, then I can only click on the URL. I can’t then click in the main browser area (where I am typing this message), until I refresh the desktop again.

As may be obvious, this gets very tedious. I’ve tried rebooting the entire machine — from the console, because even in the initial gdm welcome screen, I can’t click “restart” or “shutdown” or anything. I’ve tried restarting gdm several times over.

The mouse works fine, it’s connected to a KVM switch and works absolutely perfectly on the other computer. It just seems to get stuck in things. I can’t even open another program using the mouse without refreshing the desktop, and then I can’t use the program any more efficiently than I can use this one. I’m currently using the console and ps x etc. to end programs, as well.

I can get around things with keyboard shortcuts but that’s a pain in the butt. So… yeah does anyone have any clue how to get it to stop this?

Holding autistic people hostage is not a way to fight for our rights.


I noticed that I was not the only person too disgusted and horrified after the murder of Ulysses Stable to even want to speak to people who think of justifying his death in any way. It seems that a lot of us have had enough.

I know that a lot of people think there’s nothing wrong with saying stuff like, “If you don’t give parents respite hours, parents will kill their children.” Regardless of how much respite the murderers had, for that matter, but that’s another story.

All any of you are doing, when you say those things, is holding autistic children — and adults — hostage. Yes, it’s dressed up, and pretty, and fancy, and sounds like concern for parents and the safety of children. Yes, you may even believe that’s all you’re doing.

But if you take off all the sparkly ornamentation that distracts people, what you’re left with is the image of a person holding a gun to the head of each and every autistic person, and saying, “If you don’t do what we say, we’ll murder them, one by one.” And you’re degrading parents too, by the way, because you’re painting them as potential killers.

It’s no shock to me that autistics are fed up with this treatment. Many of us can see through that kind of thing quite easily and see the threat that lies behind it. Using killing as a bargaining tool only begets more killing, as Dick Sobsey and others have pointed out. And nobody should be surprised that autistic people are sick and tired of being the ones whose lives are used to bargain with.

So I will join with many others I know in saying: If you have any shred of respect for autistic people, stop using us as hostages. Find some other way to lobby for respite hours and other assistance. Stop devaluing our lives. We are people. And we notice fully what you are doing to us, when you take off all the shiny doodads that distract most people from what you’re really saying about us.



The following is all I managed to write about aspification (at least all I can find at the moment), in a file dated June 2004:

Aspification is many-lookinged thing. Aspification is a stereotype. It first takes a stereotype. First stereotype. First stereotype is. Of stereotype aspie. Aspie meaning not word I believe in. Aspie meaning stereotype. Stereotype aspie social awkward quirky brilliant person. Stereotype aspie has job. Stereotype aspie is geek. Stereotype aspie has good verbal skills. People not want autistics speak up for ourselves. All autistics speak up get aspified. Aspified is to make in head like aspie stereotype. Aspified is erase me. Aspified is even erase people more fit stereotype. Aspified erase all. Aspified is erasure.

Obviously not one of my best days for constructing full sentences, but that’s what I wrote. I did not get into all the complexities, and never seem to have been able to when writing about the topic, but that’s what I’ve got on it so far. I didn’t mean it as only something imposed from without, though, because the autistic community is plenty good at aspification in its own right (although it probably wouldn’t be without other pressures). But that’s what I’ve managed to say about it.

Feline pain management… yecch.


I took my cat back to the vet today (they said they would avoid cashing my check until I get paid in December). It turns out that what she has, probably isn’t just fleas. I kind of thought it was more than fleas, but I was hoping the vet was right about it being fleas or allergies or something.

They poked and prodded her all over this time. Judging from the pattern of when she yowls and when she doesn’t (as well as the one time she jumped, hissed, and bit the veterinary assistant) — something she is apparently far better at doing than I am — her pain is in a particular part of her mid-spine area, and then radiating out from that where the nerves from that go, including to that leg that she’s been picking at a lot.

So I got a long discussion of neurological diseases in cats. Apparently, they don’t have MRIs or CAT scans for cats anywhere closer than Maine or Massachusetts. And apparently, that’s both very expensive and unlikely to result in any useful information in terms of treatment (the main thing that is treatable, which this probably isn’t, the treatment is a surgery that can be worse than the actual condition).

They said that it could be something inflammatory like arthritis, and it could be a temporary injury. They want to put her on prednisone and see how well she does on that. She did chase and bully the dog a bit when she got home, which is a good sign. (She’d been too tired to even hiss at the dog before.)

I also got to learn that feline pain management… basically sucks. They apparently have fewer negative reactions to steroids like prednisone than humans do. But at the same time, they have really bad reactions to non-steroidal anti-inflammatories (like ibuprofen in humans), and there’s only a few they can take, and those ones not long-term. And of course, this may be neuropathic pain, which is hell to treat in any species. (As I’m well aware from having the human equivalent.)

She’s been acting really unusual — unusually cuddly, with everybody. She normally does like cuddling except with me, and then not as often as she has been. She even followed me into the shower the other day. When I came home from Thanksgiving dinner, she started prrrrr-yowling at me and then jumped on my chest and wouldn’t get off. She’s slept on top of me every night. She’s turned into cat-Velcro.

So… I’m really hoping this is temporary, but if it’s not, it looks like I have a whole new species (literally) of pain management to find out about, a species that’s even less well-understood than humans. :-/

Thankful for stuff people shouldn’t have to be.


Everyone’s doing posts about what they’re thankful for, on Thanksgiving.

I’m thankful for things that nobody should consciously have to be thankful for. I’m thankful that I have a family who has never once thought of killing me or justifying the deaths of people like me. I’m thankful for the fact that the people who did try, didn’t succeed. I’m thankful that I have a few friends who, unlike it seems the majority of the world, don’t think there’s anything about autistic people that remotely justifies other people killing us, and don’t spend their time sitting around sympathizing with the people who do. And I’m thankful for the existence of organizations like Not Dead Yet, that at least attempt to get what shouldn’t be a minority voice, that of disabled people who understand how far our lives are being devalued by this justification-talk, out there.

And if you’re still despite all the evidence of how much damage it does, going to justify this stuff? I’d be really thankful if you’d do it on somebody else’s server, and somebody else’s webspace, if you’re going to do it at all. As in, not here. There are more places where you can get away with that kind of bullcrap than places you can’t — if you’re that keen on it, go find one.

Change, rapid and otherwise


I’ve just noticed that I had a bad migraine, gone all over the house looking for pain meds (that should tell you something about how bad it is, I almost never use pain meds), and not found any. The going all over the house alerted an automated system where someone checks in and sees what’s going on. This is done in a fairly non-intrusive way, and I can hear when they’re listening and when they’re not based on assorted beeping. And so I told them what was going on, and they helped me figure out how to borrow ibuprofen from a neighbor.

Just a few years ago, I was in so much pain that I spent most of my time curled up on a couch, and did not think to ask for pain meds until I’d spent so many months that way that I had to retrain myself to sit up for any length of time. And I didn’t even think to ask for pain meds then — someone else, through fairly careful observation, was the one who figured out I should do so. I didn’t recognize what I was experiencing as pain, and even when I noticed, I didn’t realize I should tell anyone.

I worry when I make these sort of posts that they’ll be read in an overly maudlin way, or through an overly individualistic sort of lens, and that’s certainly not how I intend them.

Someone told me recently in chat that she’s surprised at how fast I must have had to change in the past few years, given all the things I’ve learned and crammed into that time period. I can remember sometimes during that time, experiencing things where someone would treat me as if I was a certain way, that I’d been the month before, maybe, but that was now not there at all. And not really knowing how to react to this. Someone told me at the time that most people aren’t prepared to keep up with that rate of change in someone else, but that people do change that fast sometimes.

I told the first person (last night?) though, that I’m not sure whether seemingly rapid change happens all that rapidly, or whether it’s a bunch of little things in the background over time that add up to something that looks very sudden. A bunch of little things in the background over time is certainly how I’d characterize the way a lot of things in my life go. They only get noticed when they combine in such a way as to jump into the foreground, often in a spectacular way. But the little components and stuff are all there, all busy lining up, all the time.

I don’t just live my life in this foreground-land that other people notice, either. The constantly shifting patterns of the world are always there.

The fact that I notice them is in some ways constantly visible, in the way I respond to my environment. Anyone who knew what they were looking at would be able to read the way I move in more detail than I even always care to think about. They would even know the tiny ways I can use slight modulations in my reactions to communicate with other people who know how to read that kind of thing. They would see, in short, what I see when I look at a lot of autistic people presumed unaware of their surroundings for reasons totally unknown to me.

But, the “foreground” stuff is much tinier than that, and it seems that that is what people pay attention to. A very tiny sliver of the amount of stuff that’s going on, and that’s what people base their entire ideas on. That’s how we can be presumed unaware, or aware, at the drop of a hat, based on some pretty arbitrary criteria.

But even so, I’m still amazed that I noticed I had a migraine, and then took all those steps in terms of doing things about it. Some of that is stuff I learned, some of it’s made possible by the environment I live in, some specifics are made possible by the electronic surveillance systems running in my house. But being able to do that sort of thing, even sometimes, does amaze me. But… if anyone turns this into some kind of disability-inspiration thing, just please spare me, that’s not what I’m talking about.

As I was writing this, I found out that another autistic person will not have any chance to experience life any more, in the way I’ve just described, or any other way. There’s been another murder. I’ve long since been no longer surprised. It’s just a matter of bracing myself for the inevitable over-sympathizing with his murderer. Again. And again. And again.