Monthly Archives: February 2006

On fitting in.

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Part I: Why I’m writing things this way

I’m having trouble getting the words out any other way. Zilari, of Processing in Parts, has convinced me it’s possible because of xyr reply in the On Being Different post in 29 Marbles. But so much of the lines are scrambled that it’s going to be interesting getting the concepts in and out. Language is not doing what I want it to do right now. I am going to try to write this in pieces.

I am using myself as an example in many of these merely because I am near at hand and it is more difficult for me to observe things that are not near at hand right now. I should probably clarify that I am again not asking for “emotional support” or strange sympathy-esque emotions that make no sense, I’m trying to illustrate points.

Part II: On universality of attitudes

I once said I knew an autistic guy, been to many countries, he said it showed him how many different ways there were to do things.

I haven’t been to very many countries. But even in different parts of the United States I have seen many different ways of doing things.

I have been places where nobody bats an eyelash at my appearance and I have been places where people call the police at the mere sight of me.

I have been places where the way I act is seen as normal and the I have been places where the way I act is seen as way the heck not normal.

In the society that lots of people pretend is the only one, there is no way I am seen as normal, there is no way I do not face a lot of prejudice just based on my appearance, etc. In the society that lots of people pretend is the only one, the only thing kind of normal about me is the fact that I can use language, the rest of me looks very odd.

But I’ve been other places and I know better than to think this is all there is.

I know it is a false idea that people like me are always shunned to the degree we are where I live now. Your own society is never the whole of human nature.

Part III: On whether autistic people are “deliberately” this way

Personally I do not pass for non-autistic. I just don’t. There is nothing about me that screams normalcy unless you get me in an environment where stereotypically autistic-looking people are accepted to a larger degree (these environments do exist).

But it is true, a lot of autistic people can pass. But passing requires a lot of energy. For some autistic people, passing means not eating. It means being in constant unrelenting physical pain. It means in the end not functioning and not surviving. Our brains are built to function in an autistic way, not a non-autistic way. This is what we do.

We cannot just swap out autistic and “normal” behavior and have the “normal” be better for us than autistic. The autistic part has a reason.

As I type this, I am rocking, violently twisting, grimacing, finger-flicking (yes, while typing), and squealing. Does this look strange? Yes. Could I type this without doing that? No. I would be curled up in pain and banging my head on something while screaming. Is that better? No. (I am not sure I will not end up that way in a few minutes frankly.)

Yes, some people have more ability to pass than I do. But should someone be penalized for choosing to rock at a point when I cannot choose not to? I don’t understand why. I don’t understand why I guess we are being split up into deliberate and not-deliberate.

Part IV: On making an effort

Let me tell you something about effort.

If I let go right now on the iron grip I have on effort, I would instantaneously lose all ability to use the language I am typing and reading. I would perceive my surroundings as an array of patterns of color and texture and pitch and motion. Language would be switched entirely off. The whole concept of things existing that are not in my immediate environment and time would not exist anymore, nor would time. Movement might be iffy. It’s frankly tempting right now because the effort is pretty bad, and once I’m done with this it’s quite likely that I will lose momentum and slide into it involuntarily, if I don’t voluntarily give these things up first.

I obviously view communication as a high priority at the moment to divert all that energy into it.

Diverting this energy into communication means that I cannot control my body posture. I cannot control the noises my mouth is making. I cannot control how weird or normal I look. I am having trouble controlling the words I use to the degree of precision I would prefer and a lot more is getting lost in translation than I would like. I have just run and lurched and spun and crashed on the floor and rolled around and got up again in the middle of writing this. I am not kidding and this was not voluntary, this is a system trying to compensate for the fact that I am putting so much effort into one thing that I am stretching a lot of limits.

This is all for writing something, alone, in my apartment, with only a dog and a cat for company and no stressful input except possibly from my computer screen.

It takes this much effort to do this. It takes even more effort to do more non-autistic-friendly things, such as exist in a world that is not designed for us in the slightest. When I am interacting with people, I am putting immense effort into understanding and responding to them. I may be putting more effort into it than most non-disabled people have to put in except in crisis situations.

And I’m quite often, despite all this, seen as putting no effort in at all and in fact being rather lazy. Because no matter how hard I work I am never even close to the accepted standard of normal. It is just plain inconsiderate of me to have a body that moves and responds and perceives the world the way mine does.

Part V: On deliberateness being wronger than not being able to help it

In most cases, especially when the behavior is simply considered unsightly, I don’t get it.

Is a woman who is bald because she’s just more comfortable that way more wrong (especially when people yell “dyke!” at her) than a woman who is bald because she has had chemotherapy? People often stare at bald women (well, in some places they don’t, but in some places they don’t stare at autistic people either) and avoid them and think they’re strange. Is the woman who’s comfortable that way just bringing it on herself?

If an autistic person really could suppress rocking but doesn’t want to, is that worse somehow than an autistic person who cannot suppress it? Is the first person just bringing it on themselves when people call them a retard, bar them from certain facilities for “disturbing the customers”, etc?

Is an autistic person who is okay with who they are, automatically “choosing to be autistic” and therefore responsible for what other people do to them? Would it be better if I acted very pitiful and did the whole “I sure wish I could help it but I can’t” routine and prayed for a cure openly and publicly?

Part VI: Fitting in socially vs. fitting into society

Society would not be what it is if everyone in it were the same. The typewriter in my room would not work if it were made entirely of screws and nothing else.

A lot of people want to mold autistic people — and other neurologically atypical people — into shapes we are not. By shapes we are not I mean to try to recreate us in a non-autistic image because that image is more pleasing to non-autistic people. The same has been done to many other people, for instance paraplegics have been forced to walk badly using braces and crutches rather than use an “unsightly” wheelchair, blind people have been prevented from using Braille and cane travel because they were seen as “stigmatizing” by sighted people, and deaf people have had their hands tied behind their back because their “animalistic” way of communicating with each other was seen as evil and wrong and bad.

Disabled people of all kinds do operate differently.

Disabled people of all kinds do need to operate differently.

And disabled people of all kinds have a place in society.

Having a place in society is not the same thing as “fitting in” on a superficial social level and having everyone like you. Sometimes your place in society is to be the person that people don’t necessarily like but you’re serving a function whether they like it or not. Society needs a certain amount of autistic people and people with all kinds of different brain and body configurations, whether we’re liked or not, whether we’re accepted or not, we’re necessary. And not just again on a superficial level of someone else’s gauge of what is productive contributions to make.

Part VII: On accepting the consequences

The consequences for me are not trivial. But they do not strike me as just “the consequences of being me,” I have seen enough places to know better. I know that these consequences are interactions between cultures and people and places and kinds of people and so forth, they are not just the “consequences of having this trait,” whether the trait is the inability to do something or the ability to do something or the way something is done or the way a person looks or anything else.

But I have a problem with the idea that I should accept the sort of “consquences” dealt with in Project Cleigh as if they are inevitable and right and so forth. I also have a problem with the idea that I should accept the various “consequences” that make it literally physically unsafe for me to go outside alone because of how many people react to my appearance.

I could and have for instance just by looking the way I do get sent to the emergency room and given drugs that I have life-threatening allergies to. I refuse to accept the idea that it’s okay or a natural consequence of looking like me that going outside alone is life-threatening, it simply does not make sense. Whether or not I have chosen to look this way. And choosing is not bad, but not having a problem with the way I look is not the same as being able to choose how I look.

The way I look doesn’t just get people looking at me funny, it gets people trying to figure out what group home I got out of and surrounding me and detaining me and doing other unpleasant things to me. It means that I have to have someone with me who looks “competent” just so that I will be seen as being “supervised” even if I don’t need “supervision”. It is dangerous for women to walk outside alone in some places (not where I live, but where I used to live) but that is not accepted the way the danger to me is accepted.

And it does not seem either inevitable or acceptable for things to be this way. Not inevitable because I have seen it other ways, not acceptable because people shouldn’t have to put up with this kind of thing, autistic or otherwise. I accept that it happens but I do not accept that it should happen and there’s a big difference there.

Part VIII: Trying to tie this together in words

Which I’m not going to do too well right now. I hope the parts I am getting through are making sense.

I have just realized that echolalia of a sort will do the trick. Here is a quote from a friend’s unpublished autobiography:

[in describing being good at saying and doing things other people wouldn’t dare to say or do]

This is of course an ability that carries with it a high degree of risk. From a perspective that sees persons as atomic — discrete units of mass and energy floating in a vacuum — my ability to take these risks is “pathological.”

But humans are not the classicist’s atoms floating in a vacuum: they are components of a society, an ecosystem, and a universe. There’s an essential social role for precisely this kind of risk-taker. This is the part of the puzzle where I fit.

If I were to try to “learn” to avoid these risks, what I’d really be “learning” is how not to fit into my natural role in society, how to be a true misfit, rather than an apparent one. I can’t benefit from “skills” that would turn me away from taking these risks, but I have benefited from everything I’ve ever learned that has made me better able to recognize and manage these risks.

This is where I think most attempts to “help” autistic spectrum persons fail. They start from the assumption that the person does not fit in, and then seek to twist the person into some imitation of normalcy — usually at the expense of the autistic spectrum person’s sense of self and self-esteem — rather than starting from the position that the person has a role, already does fit in as a critical edge piece of the human puzzle, and seeking to help them develop the tools they need to fill that role effectively. We don’t need the skills it takes to be “normal”; we need the skills it takes to be different.

I’d buy the idea that NTs have a real (and not merely a majority-rules) grasp of things social if I didn’t find myself reminding them that they live in a society as often as I do…

And I am very glad she wrote it, because it’s everything I’ve wanted to say in this post, only shorter and better languaged. We already have roles. We just need to learn how to best deal with the roles we have. And other people should not be treating us badly, and when they do it is neither inevitable nor because we should have been efforting more and fitting in in the “true misfit” way and everything else.

Now if you’ll excuse me I think I’m going to go do something very loud and conspicuous and socially inappropriate. That’s what trying to force a non-language brain into language mode will do sooner or later.

Dare To Resist

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Someone recently posted something with so many assumptions contained within it that I questioned, that while I wanted to respond to it, I really couldn’t. It required too many word-angles at one time. One of those assumptions was about the attitudes other people have towards autistic people when we are seen in public, and how inevitable they are, and how they’re somehow the responsibility of the autistic people (especially if we like being autistic, and/or especially if we could suppress the difference but don’t, and it was difficult to tell if these two things were being considered the same thing or not, but it sure seemed like it at times).

At any rate, in response to part of that, instead of doing the thorough dissection I long to do (but lack the current language skills for), I’ll post a link to Project Cleigh: Dare To Resist! (they are even selling t-shirts now).

Project Cleigh is about those little acts of degradation that disabled people (among many, many other people) encounter on a regular basis. Cal Montgomery got a lot of responses to her original article on the topic, and has discussed them in her most recent (Dare to Resist) article. They’re worth a look. And she’s still collecting more submissions. (I just sent in a whole bunch today, although I have trouble distinguishing from little acts and big acts.)

Adolescence pathologized

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I’ve been thinking a lot, lately, about the ways in which my autistic-style adolescence was pathologized, because there was no other view anyone around me knew to take of it. It was “regression”. And so forth. I had the kind of changes in adolescence that, I have read, you’re supposed to see a neurologist about. And I did. They had a lot of theories. Including some pretty scary ones. But they didn’t really know what was going on. I was growing up. Autistic style.

I wondered, when I thought about this, what would happen if ordinary adolescence were pathologized. I’d seen a bit of it when I was in the system with a lot of kids who were, for instance, locked up for things like being pregnant. (Not kidding. She got released when her pregnancy test turned out to be a false positive. Cleared of all diagnoses, too.) But I wondered, what if the natural changes and drama of the teenaged brain came to be seen as this horrifying regression that might kill the person and so on and so forth.

Then I read this article.

I guess I’m not surprised that someone’s gone and pathologized adolescence.

Something that amazed me about Tranquility Bay is that it encompassed nearly all the worst parts of institutions in stark detail. I don’t mean the physical punishment and solitary confinement. I mean the degradation refined to an art form. I mean the totalitarian aspects. The total lack of power. The brainwashing.

Those are the bad parts of institutions, and the parts that even all the sweetness and light versions of institutions never really get rid of, they just mutate in form, because an institution is an institution is an institution. Tranquility Bay isn’t a sweetness and light sort of place (even though the stupid names for everything are like that), but it’s still very heavy on the bad parts.

When Laura Tisoncik talks about being saved by bad insurance, this is part of what she means. The more expensive the place, often what happens is you get a clean pretty place that’s so overstaffed that they have the time and power required to truly mess with your head.

I remember once being offered a “choice” between a state institution and an idyllic-looking group home. The state institution had all the horror-film trappings of institutions, was loud and noisy and ugly and scary, but it was not very well staffed. The idyllic-looking group home was extremely well staffed, and all the restraints were on people’s minds where you couldn’t see or touch them. I chose the state institution. My choice was overruled by people who assumed I didn’t know what I was doing. I moved to the group home.

I have had staff try to kill me. I have been beaten. I have been tortured. I have been molested. I have had all of these things and more done to me in institutions. I am just relaying facts here, to illustrate a point, I don’t want sympathy. I would rather have all of them happen all over again and maybe also throw in being left to lie in my own piss and other “fun” things like that, than get sent to a place like Tranquility Bay, or like the group home I was sent to.

I can remember being taught to echo that my life was saved, too, in a position where I had much less communication ability around to resist than a lot of those kids do. Not that any of them really stand a chance in a place like that.

I wasn’t saved by that place.

I’m still trying to extricate myself from some of the invisible bonds placed on me in that beautiful group home. Despite many of the nightmares and flashbacks from other institutions finally starting to fade with time.

Brainwashing is not help. Teaching people unswerving obedience and to not think for themselves will create people who are, even if originally nondisabled, going to have a lot of difficulty functioning in society as adults. I wish I could say that I can’t believe that people were doing this, but in retrospect I think I used to know someone who was sent to one of those places.

I don’t think it’s worse that they pathologize normal adolescence than that they pathologize my kind of adolescence. But I do think it shows how far people are willing to go, and how out of touch some people are getting with the stages of life.

Autistic parents, and custody, and the dangers of mixing “emotional support” and politics.

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I just stumbled across the ASpar site again, and found the following in an explanation of the demographics of the ASpar organization:

We have had some people who said they were happy with their AS parents. However, these were less than 5 people, and all of these identified strongly as AS, are well known in the AS self-advocacy movement. They all have an obvious stake in not wanting an exploration of the negative side of AS. These members generally did not share their experiences, or offer support, but tended to chime in only to defend people with AS, and put the blame back on NT mistreatment of AS people. While it is historically true that AS people have indeed suffered enormous mistreatment because of their perceived “oddness”, nevertheless there was an unwillingness to accept that AS may create real obstacles to adequate parenting.

I joined the ASpar list when it was advertised merely as a group for people with autistic parents. It did not advertise itself as a group for people with negative experiences of their autistic parents, or a group for people who had no desire to understand their autistic parents but only to vent about how heartless they were, merely a group for people with autistic parents. I was interested in finding out how I might be perceived by any children I might have, as well as discussing my experiences with my autistic father, so I joined, not knowing what I was walking into.

I did in fact discuss my experiences and my experiences with my father. I even, contrary to the implication above, discussed both positive and negative experiences. I did not join the list with some agenda to prove that autistic parents are angelic and perfect, because I knew perfectly well that this is not true.

I did, however, have some interest in exploring the good side of autistic parenting styles. I had no idea that this would create the responses it did. I was told that my father must be “only very mildly affected” because he has things like compassion that are in fact present on all “ends” of the autistic spectrum (lacking compassion is simply not an autistic trait). I saw a fellow autistic listmember, who had done nothing more than treat people nicely, get asked, “You are so nice. Are you sure you are really autistic?” There was an actively skeptical and hostile mood toward the idea that any autistic person could be truly a nice person unless they were only mildly affected.

When I said that I could not handle these attacks on my father and on other listmembers, and the implication that “severity of autism” has anything to do with niceness or compassion at all, that in fact I found these things offensive and insulting, I was told that I needed to allow people space to vent because this was a support group.

I was stunned that personal attacks on my father — not even their own parents, but my father, who none of them knew — were considered venting, rather than attacks. I was stunned that implications that listmembers right in front of them could not be autistic and also nice, were considered venting, rather than insults. It seemed that the list had an unofficial but listowner-enforced policy of allowing hatred to be spewed at totally random autistic people, and insisting that if we did anything other than sit there and take it, we were not being supportive.

I was told when I left the list that perhaps later on, more people who had positive experiences would join, but that support groups attract people with negative experiences. I hoped that this would be the case, because I know, out in the world that is unfiltered by the misery-attracting nature of many support groups, at least as many people who have a good relationship with their autistic parents as people who have a bad one. By the way, it’s far more than five and not always any of the other things Singer characterizes us as either.

For the record, I have no problem with the idea that being autistic, and being autistic in the current world, can mean certain things about parenting style, even bad ones at times, depending on the person. I have no problem with the idea that there is a bad side to being autistic. The characterization of all who disagree with the direction and aims of Judy Singer’s “support group” (which is now much more than a support group, it aims to affect child custody research) as “unwilling to see the bad side of autism” is totally false.

The idea that because we are autistic (or “strongly identified as” autistic, rather than… what? “weakly identified”?), our opinions on having autistic parents is somehow of less value, is just as problematic as the idea that autistic parenting styles are automatically suspect because the parent is autistic.

Anyway, after I left, and after I was assured that maybe things would change, I stayed away for awhile. Then I checked back at the site for some reason. The site had taken on a much more negative, destructive tone than it originally had. There were now statements saying that people who were “strongly identified” as autistic (as opposed to people who just thought they might have some autistic traits), and people who had trouble reading social situations, were no longer welcome, and that the place was basically closed to all but people who had negative experiences and/or were willing to put up with highly negative characterizations. Characterizations that, from my experiences on the list, extended to all autistic people, not just the parents of the people on the list. So the list pretty much excludes anyone who can’t stand continual autie-bashing.

So the claim that it merely attracts people with a negative focus is no longer true. It now repels people with a positive focus as well as the vast majority of autistic people. It no longer just repels us inside the list, it now repels us outside the list, before we can even join.

Another change had taken place on the website, at that time.

The website had not only shifted to a much more negative portrayal, but was now taking an activist leaning in terms of getting involved in child custody law.

So not only had they decided to weed out nearly anyone remotely positive about autism, but they had now decided to try to affect the legal status and custody rights of autistic people. This is why support groups and politics should not be mixed. “Respecting people’s feelings” in the context of a closed support group, especially one as biased as this one, should not be the basis of attempts to shift policy change. Not when so many of us with different views are being repelled, and then mischaracterized as well.

I come from an extended family with both autistic and non-autistic members. I have been abused by autistic and non-autistic members of my family, and treated well by autistic and non-autistic members of my family. Anyone who thinks that I think all autistic family members are great or all non-autistic family members are awful isn’t paying attention. But neither is the reverse true.

I do believe that the idea of just acting like “a disability affects a family and we need to measure all the negative ways in which this happens and keep an extra close eye on parents with this label” is a very individual-model, medical-model, discriminatory way of looking at disability in general. I know of many good parents who have had their children taken away, or been threatened with it, because they were judged based on a disability label alone. Not to mention forced sterilizations and forced abortions that have happened for some disabled parents.

I’ve thought about having a child, or adopting a child. One thing that has stopped me is the potential that the kind of autistic-hating that takes place on that site (it’s not just about venting and sharing feelings, it’s about influencing policy with the results of those feelings, and not necessarily examining the feelings) could mean that I would have to fight for my right to keep a child from the moment the child was conceived. I have already encountered the prejudice of doctors who ignore my real concerns about parenting in favor of their stereotypes of what someone like me can and cannot do. Imagine that prejudice amplified by the idea that I am going to be selfish, egocentric, unwilling to get to know my child in a reciprocal manner, etc, as presented by ASpar.

Or for that matter, imagine my own family being ripped apart by these sentiments, either in my generation or earlier generations with autistic members. My family which, while having problems, does not have problems just because some of its members are autistic, but because people are people and people have problems with each other sometimes.

When there are questions about parenting, parents should be looked at as individuals, not diagnoses. There are plenty of selfish, nasty parents out there with no label at all and plenty of caring, devoted disabled parents, plenty of parents who don’t understand their children or who do understand their children (and this can be related to autism but it can actually go both ways, not just one way), and everything in between and the opposite as well. I simply haven’t seen the bias towards horrible negative experiences with disabled parents, or autistic parents, (or any other particular kind of parent) because I tend to avoid support groups and other places where misery congregates, so I get to see a wider range of people.

If this had stayed as just a support group, where people could do their misery-loves-company thing off in a corner somewhere, I probably would have forgotten all about it. But with the group claiming to want to influence policy and research, something needs to be said other than “Of course these people are right, and of course the people opposing them just don’t want to see autism’s bad side (and insert any other dismissive or negative characterization here that will allow our opinions to be conveniently dropped).”

And, on a related note, Venting or Hate Speech?

Pretty social illusions

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There’s a group of people out there, fairly amorphous to me because I do not keep track easily of who is who (so I hope I don’t get asked who it is), who seem to believe something like this: “If we are nice to autistic people, and we make appropriate ritualized gestures of ‘respect’ towards autistic people, and we get along socially with autistic people, and we meet them halfway, then it does not matter what we do to our children in the name of helping them, because our children are all individuals, and we are meeting these autistic adults halfway by deigning to at least talk to them.”

Some autistic people have been okay with this, encouraged by it. I have been mostly mystified by it.

Despite accusations of idealism from time to time, I tend to be a very practical person.

To my very practical mind, the above sentiments look exactly like “Parents have a right to do whatever they want with their child, all ‘treatments’ are entirely individually-based, etc.” only with lots of ritualistic social posturing all around it to soften the edges.

It’s still a very medical view of autistic people.

It’s still a point of view in which autistic people have very little power.

It’s still a very “intervention” based approach. (I loathe that word.)

It’s still a point of view that gives all the power to people who can decide to do very dangerous things to us whenever they feel like it, if they personally feel that the dangers are worth what they personally believe the benefits are.

There’s just… all the social posturing on top to make it look pretty, and to make those of us who are unwilling or unable to follow or engage in such posturing, look ugly.

I want to be clear on something, in that regard.

When I wrote Neurodiversity is not the opposite of biomed… it was not social posturing of that kind. It was not meant to legitimize biomed in any way. It was simply meant to point out that the concepts that are currently being called neurodiversity have been around longer than biomed, will probably outlast it, and are not concerned particularly with biomed. It was meant to address the self-centered nature of the viewpoint that whenever something autism-positive popped up, it was an attack on biomed, even if biomed wasn’t mentioned.

I did not write that to close some kind of gap, because all the social posturing in the world won’t bridge certain gaps.

People are dying and being damaged because of “biomed”, because of restraints, because of neuroleptic drugs, because of quacks who treat things that aren’t there while ignoring what is there, because of the long-term emotional effects of a lifetime of people trying to “fix” who we are, because of the lack of future planning entailed in a childhood spent with parents sure we would be cured by adulthood, and much more.

I don’t understand why putting a pretty face on the “everything is an individual choice” thing makes it any prettier when I look at the paragraph above. I don’t understand where the meeting halfway is happening. If simply talking to autistic people without overtly doing socially mean things to us is “meeting us halfway,” then I really don’t think that’s good enough. That’s something we should be able to expect, it’s not something we should have to feel grateful for or like people are really stretching to do it.

It seems that some people just want to get along socially because it feels nicer, less unpredictable and unpleasant, etc.

It’s not pleasant for me.

It’s not pleasant for me because I don’t have the kind of mind that can shut out what I see in front of me in favor of beautiful abstract weavings. Not for very long. I’m not even capable of hiding things from myself for very long, not to the extent most people are. And whether the abstract weavings take on the form of the sort of cognitive processes that suppress perception, or the sort of social niceties that obscure reality, they will fall at some point. Whether I want them to or not. It’s not voluntary. Illusions fall apart and I’m left with whatever’s in front of me.

I also lack the privilege necessary to maintain that level of pretence. If I pretended all that mattered, in the same way that many pretend it does, then I would be dead by now.

Neurology and circumstance have conspired to make me pretty unfazed by beautiful complex illusions over the long run. Not that they can’t entangle me briefly, but they fall apart rapidly. “Over the long run” I mean that sooner or later, they go away. Always.

Fortunately, there is plenty of beauty in reality, more beauty than an illusion could even vaguely replicate. But often the illusions cover up the ugly, unwanted, or inconvenient parts of reality. (And when I point out that this is happening, I am often regarded as not appreciating beauty, because I have little tolerance for pseudo-beautiful illusions.)

One often-unwanted part of reality is that no matter how you dress it up, the “Parents have an absolute right to decide what’s best for their child” viewpoint still creates enormous problems for the child. The “Every child is an individual therefore we can do any treatment we seem to think works” viewpoint still allows for many dangerous treatments for non-existent conditions, or dangerous and unreal treatments for existing conditions. All of these viewpoints tend to take a fairly individual or medical approach to autism, which in turn creates its own set of problems.

I see people doing the things that they’ve always been doing, but adding a few words here and there and claiming that now it’s okay because they’ve added these words, see, these words of respect, or something. The pretty social illusions, the shows of “respect”, the attempts to avoid open conflict while still doing the same old things… they do not change the fundamentals.

Autistes: L’intelligence Autrement — Une traduction.

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Michelle Dawson is in the news in Autistes: l’intelligence autrement. That’s my favorite of the newspaper articles currently circulating about this research, but it’s in French. The autotranslators were seriously mangling it in places. I found myself in the odd position of being able to read it just fine in French, but having a good deal of trouble rewriting it in English. (I wanted to be able to show it to a few people who didn’t speak French.) So this is a translation, and yes, I’m aware there are parts I could’ve translated differently.

By the way, I haven’t had that much formal exposure to French (and could not have read an article like this when I did), but I read a lot of French and watch French-language TV and understand a fair bit. I think this falls under the category of the kind of learning that Michelle describes in the article. (By the way, I could also produce French sounds at a much later age than people are supposed to be able to produce them if they are not exposed to them at a young age. I can also produce and differentiate sounds in many other languages that I was exposed to even later. Michelle once pointed out to me that the neurotypical loss of this ability to hear and produce sounds is somehow never regarded as a “regression”, yet when autistic people lose abilities, it is considered a regression.)

Autistics: Intelligence Differently

Pauline Gravel

A team from the University of Montreal demonstrates that the current methods employed to evaluate the intelligence of autistics are inadequate.

All is false. The majority of scientists are biased. The measurements they took until now are not representative and contribute to the myth that the majority of autistics are intellectually impaired, or, exceptionally, “idiot” savants.

The team of Laurent Mottron, professor at the department of psychiatry at the University of Montreal, threw a stone in the pond of this consensus, maintained too long, yesterday, within the framework of the congress of the American Association for the Advancement of Science (AAAS) in Saint Louis, Missouri. In collaboration with Michelle Dawson, an autistic researcher, Dr. Mottron has demonstrated that current methods for evaluating the intelligence of autistics are inadequate and don’t permit the revelation of the true level of intelligence of these people, who are sometimes mute and whose bizarre behavior in certain areas has often led to an underestimation of their intellectual capacity.

To adequately appreciate the intelligence of autistics, Dr. Mottron also emphasizes the fact that they are often evaluated at the age of four or five years, well before an autistic child reaches his full intellectual potential, which often appears only around six years. However, this early estimate would most of the time involve an underestimation of their level of intelligence. “Such an erroneous judgment will have disastrous consequences for the child who will be diagnosed with low-functioning autism, because the material and the occasions he needs in order to learn and develop will not be offered to him,” says Michelle Dawson, who emphasizes the fact that there was a time in her life when she presented the appearance of a low-functioning autistic.

Negative Vision

In most research centers and clinics in the world, the IQ of autistics is measured with the Weschler scales which are made up of 11 supposed sub-scales to create a representative sample of different characteristics of human cognition. Autistic people who master oral language are rather mediocre at verbal subtests, in particular those known as comprehension, but they literally excel on tests of block design, in contrast to non-autistic people who invariably present the same mean level at this last task. “Autistics clearly have a peak of ability on that particular subtest which consists of reproducing a geometric design with the faces of cubes,” emphasizes Dr. Mottron, who directs the autism specialist clinic at l’Hôpital Rivière des Prairies. “However for about thirty years, a dominant hypothesis in the scientific world has said that if autistics were good at making designs with blocks, this was inevitably because they had a deficit in the processing of global forms. On the basis of an absolutely uncontested dogma that autism is a disease, scientists look for what does not function in autistics. They seek deficits that they dream of pairing with genetic or cerebral anomalies.”

“There was, however, no evidence that this peak of ability in block design was caused by a weakness, it was only a presumption, and we demonstrated this in a previous publication,” adds the cosignatory of the article presented at the AAAS, Michelle Dawson, who forcefully deplores this too often negative vision of autism.

A Different Brain

On the basis of the idea that autistics, with a different brain than that of the majority of us – whom Michelle Dawson designates as the “typicals” –, can succeed at certain tasks better than we can, the researchers at the University of Montreal endeavored to seek these strengths that most autistics have. Because indeed, almost all autistics present peaks of ability: Some are prodigious musicians, others are equipped with exceptional spatial orientation, a certain proportion are calendar calculators, they manage to find the name of the day corresponding to a date given from the future correctly by looking at a calendar of the current year, a prowess which requires a very powerful algorithm.

In this way, the researchers discovered that these same verbal autistics did much better (30 percentile points higher than with the Weschler) on the Raven’s Progressive Matrices test, a test of problem resolution that implies a high level of abstract reasoning, but which does not require verbal instructions. What is more, certain mute autistics who had been categorized as mentally retarded because of their very poor performance on the Weschler scales, attained exceptional scores (sometimes the 95th percentile) on the Raven test, whereas certain proofs of the test require linguistic logic to solve in typical or non-autistic subjects. “That thus proves that autistics do not function like us, that they don’t solve problems by the same trajectory that we do,” affirms Laurent Mottron. And nevertheless, non-autistic people obtain equivalent results on the two tests (Weschler and Raven).

John Raven made this test to measure the ability to learn, and to evaluate intelligence independently of the level of culture, emphasized Dr. Mottron. Armies around the world use it to find out the “understanding” of volunteers, given that recruitment is often carried out in underprivileged sociocultural milieus. As it is completely free of verbal instructions, the Raven test has also been useful for anti-racist purposes, to show that populations who had little access to written language had the same level of intelligence as others with more education.

A Strength Interpreted As a Deficit

A number of scientists associate the peaks of ability in autistics with a strictly perceptual intelligence, which they often consider a not-very-advanced cognitive faculty. Yet, certain tasks on the Raven test seem to require a cognitive processing more complex than simple perception, notes Laurent Mottron. However, autistics, use perception in a different way than we use it, and this, to solve tasks known as intellectual. “Perception is superfunctional in autistics who discriminate better than we do on the visual and auditory planes. It probably plays a more important and more effective role in the resolution of tasks that call upon the intellect, than among the typicals,” he emphasizes.

When they look at an object, autistics categorize and generalize much less than typicals. Still, they meticulously explore the appearance of the object, its brightness, its shape, and make of it a very thorough, deep processing that opens many doors for them, explains the researcher. Autistics seem to learn many more things than us by simple exposure. “We assimilate information without making an intellectual effort, in a fashion less voluntary than the typicals, and without really knowing what we are doing,” specifies the autistic Michelle Dawson. “This knowledge sits in my brain without doing anything until I find myself in front of a task in which this information is integrated and is used to solve the problem.”

By contrast, when Laurent Mottron reads a scientific article, it’s to seek certain information that will confirm or invalidate his starting hypothesis. “I don’t memorize everything, I cut off all unrelated information, to not let it distract me. And if I later need other information that can be found in the same article, I read it again,” specifies in his turn the psychiatrist who does not stop emphasizing the incredible contribution of Michelle Dawson who became his colleague at work nearly three years ago. However, one can question Michelle after she has made a reading of an article, in the same fashion that one can question a database, because Michelle doesn’t have preferences in what she memorizes. She assimilates many pieces of information even if she doesn’t know if they will be useful to her. But then, she connects this information with what she hears or sees and that gives her many new and unforeseen ideas for apprehending a problem. What is more, her thought is never partial whereas ours is constantly because we seek for years to defend the assumptions we have developed.”

For Michelle Dawson and Laurent Mottron, the perceptual intelligence of autistics is without contest a true intelligence. The autistic researcher believes “It is necessary to evaluate intelligence by an individual’s capacity to carry out or not carry out a task, rather than by the fact that he arrives there by typical or atypical means.”

Autism Reading, and Disability Reading, and Assorted Reading

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On Autism’s Edges is Five Star Autism Reading. What I’ve written in this entry isn’t all “five-star” (I have a horrible time figuring out starring systems like that, I always want different ratings for all different parts of something), isn’t all directly autism-related (although I think all of it should be relevant to people concerned with autism), and isn’t all even technically reading. Nor is it complete. But it was inspired by the Five Star Autism Reading thing. Ways of finding the books, or occasionally reading about the books, are linked to on the images of the books themselves.

Well-Known Autistic Classics

Labeled Autistic Nobody Nowhere

These books are Temple Grandin’s Emergence: Labeled Autistic, Donna Williams’s Nobody Nowhere, Sean and Judy Barron’s There’s a Boy In Here, and Thomas McKean’s Soon will Come the Light. They were some of the first books out there by autistic people.

I hear a lot of people saying that these stories are stereotypical. It’s important to realize that at the time each of these was written, the authors did not conform to stereotypes. “Thinking in Pictures” was not an autism stereotype until Temple Grandin wrote about it. She didn’t conform to a stereotype (in fact she demolished several), one got defined based on her. The same goes for all of the other three books.

This is not to necessarily say I like these books (I do, to varying degrees, like some of them). But all of them are important, because they’re the first widely-published books about autism with autistic instead of non-autistic authors. And complaints about stereotypes may be legitimate, but it’s important to remember that each and every one of these authors broke several in writing these books. In fact, all of these authors wrote about things that many more recent authors seem reluctant to write about, which is one thing I like about these books. There was not as much of a fixed pattern for autistic autobiography back then, so they did not conform to one.

All of these authors have gone on to write other books. (Two of them have even collaborated.)

Lesser-Known Autistic Classics

Silent Words Stephen Wiltshire's American Dream
Stephen Wiltshire and David Eastham’s books seem, at least in America, to be obscure. So obscure I can’t even find David Eastham’s first book, only his second, and that one was published after his death. Someone who tracked down most of Stephen Wiltshire’s books for me had to order one of them from as far as New Zealand.

I don’t know why this is. Stephen Wiltshire’s art is fantastic and he’s won awards for it. David Eastham is as far as I know the first autistic author to publish a book as an autistic person. Both of their books seem unreasonably obscure.

Poetry (Autistic)

Not Just Anything The Light Within And Love Was All He Said

Not Just Anything by Donna Williams, The Light Within by Lincoln Grigsby, and And Love Was All He Said by Michael O’Reilly are all books of poetry by autistic people. And they’re three of my favorites. My tagline for this blog is from And Love Was All He Said.

Autobiography (Autistic)

Beyond the Silence Lucy's Story Reflections of Self
Beyond the Silence by Tito Rajarshi Mukhopadhyay, Lucy’s Story by Lucy Blackman, and Reflections of Self by Sondra Williams are my current favorites among autistic autobiographies. They say things I’ve found hard to figure out how to say, and that’s probably the common thread among them.

Anthology (with Autistic Authors)

Sharing Our Wisdom Women from Another Planet Autism and the Myth of the Person Alone
All three of these books are collections of writing by autistic people. Sharing Our Wisdom is conference presentations by autistic people who would be regarded as all over the “spectrum”. Women from Another Planet is writing collected and written by autistic women. Autism and the Myth of the Person Alone is by autistic people who were once intellectually underestimated, learned to communicate in unusual ways, and now type independently and/or speak. I find it more useful sometimes to read books with many perspectives, like these, than to read books with one, and so these are more interesting to me than most autobiographies.

AAC (Augmentative and Alternative Communication)

Speaking Up and Spelling it Out Contested Words, Contested Science

Speaking Up and Spelling it Out is a bunch of essays about AAC by people (mostly with cerebral palsy) who use it.

Contested Words, Contested Science is about facilitated communication (a method, among many, of learning and using AAC), and specifically about the controversy surrounding whether the disabled person is actually the one writing things. I don’t use physical support very often, and even I sometimes have people trying to prove that I don’t write what I write. It would be much harder to prove it if all my typing usually relied on physical assistance, yet that’s exactly what one autistic man in this book sets out to do. In one chapter, he sets out to take and pass the same kind of test that many other FC users have failed, and it takes a lot of practice but he does it. Essential reading for anyone who thinks of this as an outmoded hoax.

Life and Death Issues

Violence and Abuse in the Lives of People with Disabilities Four Sight
Violence and Abuse in the Lives of People with Disabilities is one of those books that I wish were not out of print. I hear it’s going for a second edition at some point, and I hope that happens. It’s written by the father of a man with an intellectual disability, and he’s also worked as staff in institutions. He goes into more detail than I’ve seen anywhere else on the roots and solutions to violence, abuse, murder, institutionalization, segregation, “eugenocide”, and other things that threaten disabled people on a regular basis. He gives lots of references. Unfortunately he dismisses FC as useless and dangerous. But otherwise it’s a really good and important book.

Four Sight addresses life and death issues in the disability world that too many people shy away from because they go against some pretty ingrained taboos. The authors come from various parts of the disability community, parents, professionals, disabled people, and three of them have overlapped at least two of those roles. They discuss the “better dead than disabled” mentality, euthanasia, selective abortion (as a disability issue, not as a simplistic pro-choice/pro-life issue), eugenics, infanticide, institutionalization, and other stuff that makes many people run in horror. And they do it really well.

The Mad Movement

On Our Own Call Me Crazy Beyond Bedlam
The mad movement goes by many different names, and so do the people in it. Psychiatric survivor, ex-patient, lunatics’ liberation, mad movement, etc. The common element is people who have been in the psychiatric system, or could easily end up in the psychiatric system, or who are concerned about practices in the psychiatric system, doing everything from standing up for their own rights to calling for a complete replacement (rather than just “reform”) for the system. (Autistic people might want to take note that there are a lot of people like us involved in that movement, although given that movement’s rejection of most labels they view as psychiatric, few would identify as autistic.)

On Our Own tells Judi Chamberlin’s story and then gets into the injustices in the psychiatric system and how it can be changed. I was particularly interested to note a brief comparison, which I’ve seen in a lot of places, between Topeka State Hospital, which everyone knows to be a dump, and Menninger’s, which at the time was nearby and everyone knew to be wonderful. Someone who’d been to both said that Topeka State was physically brutal, but Menninger’s was “more destructive and painful” because it led to “total disintegration of personality and personal autonomy”. (This is something I’ve noticed about institutions as viewed by outsiders vs. insiders too, but few people who’ve never lived in them seem to understand what I mean.) I was also glad to notice that she questions what’s happened with a lot of professionals who have involved themselves in the “anti-psychiatry” movement while maintaining all the power structures that make psychiatry dangerous.

Call Me Crazy is Irit Shimrat’s story, along with interviews of other people in the mad movement, and their (often varying) political views. I was interested to note that Irit Shimrat faces a problem a lot of autistic self-advocates face: Although she was diagnosed with schizophrenia and has at one time or another had all the “symptoms” of it, people still try to tell her that she was misdiagnosed because her viewpoint on the helpfulness of psychiatry runs counter to what most people are told about it.

Beyond Bedlam is a collection of powerful essays and poems by women who’ve been in the psychiatric system. It includes an analysis of how the culture of psychotherapy contributed to making feminism much less effective. (That’s not all it includes, by a long shot, it’s just one of the many interesting things it includes.)

Professionals

I Witness Learning to Listen First Contact
Several years ago, another disability activist sent me a packet of photocopied information about disability rights issues. At the end, she had photocopied one page out of I Witness: History and a Person with a Developmental Disability. It was from the end. The author talks about how he often tells the story of the woman he interviews in the book. He says that invariably someone comes up to him and tells him that the woman he’s talking about “can’t be retarded” because she’s wise. And then he proceeds to say exactly how much prejudiced crap that is. So I had to get that book.

I Witness alternates chapters. One chapter will be an interview with “Noreen,” an old woman with a developmental disability who spent many years institutionalized. Then the next chapter will be the author’s reflections on what Noreen is telling him. And they’re pretty stunning reflections sometimes. He talks about how he once authorized the use of a cattle prod for “treatment of self-injury”, something he now can’t see as justified. He also talks about going to a play in which a bunch of developmentally disabled people announce that they’re not sick so they don’t need to be healed. And he talks about how Noreen taught him that community is more than a location.

Learning to Listen is about people, mainly developmentally disabled people, who are considered to have bad behavior (whatever the modern euphemism for that is). The book analyzes the entire social context around this behavior, rather than viewing “bad behavior” as a natural consequence of a diagnosis. I often recommend this book to parents.

I’d recommend all of Dave Hingsburger’s books that I’ve ever read, if I could. I Witness is one of them. But the book of his that I seem to refer to most often is the fairly tiny book First Contact. It’s about how to communicate, rather than just see a mirror of yourself in, other people. Specifically, it’s about the kind of people who get written off the most often of anyone. People known alternately as “low-grade retards”, “profoundly retarded”, “multiply handicapped”, “extremely low-functioning”, and “vegetative”. Hingsburger talks about his first acquaintances with people with these labels, his initial fear, bravado, arrogance, and mistakes in relating to them, and his eventual realization that they are real people, however different from him they are. He encourages people to relate to other people as other people rather than as projections of themselves. When people display “high functioning chauvinism,” intellectual elitism, claim that there’s no place in inclusion or self-advocacy or even life for “Those People,” and so forth, I refer them to this excellent little book. (Cal Montgomery reviewed it here. I’ll admit that when she reviews something, I tend to go out and find a copy. And her review sums up why I like his books so much.)

Self-Advocacy/Developmental Disabilities

New Voices Women With Intellectual Disabilities
New Voices is a chronicle of the international DD self-advocacy movement, including interviews with leaders in that movement. This is another movement that autistic people have probably had a lot of involvement in (it’s also another movement that’s often not very fond of “labeling”). And could learn a lot from. (Although I’d hate to see how all the “Autistics are worthwhile because we’re not retarded” folks would come across to people in this movement, who mostly have intellectual disabilities.)

Women with Intellectual Disabilities is written with the first part of each chapter in simple language and the second part in more complicated language in an attempt to make it more accessible to readers who need simplified language. There’s a bit of a problem with the fact that the simple language doesn’t always say the same thing the complicated language does, though. A lot of this book is not from the disabled people’s point of view, it’s studies of disabled people. But other parts include interviews or things written entirely by women with intellectual disabilities. It’s worth the whole book, though, just to read chapter eleven, “Gina’s Story,” an autobiographical monologue by Sonia Teuben, which I can’t really describe but I wish I could see it performed.

Physical Disability (Political)

Pride Against Prejudice Too Late to Die Young

This is one review of Pride Against Prejudice, which, as the reviewer says, is a feminist approach to disability, that takes on both feminism’s attitudes towards disabled women, and male-dominated disability rights movements’ views on the experience of disability. The result is a very interesting, detailed political analysis of disability and what happens to disabled people in the world.

The Me In the Mirror is an autobiography of Connie Panzarino, who grows up severely physically disabled, and eventually gets involved in the disability rights movement. It’s interesting both politically and in terms of how she views herself over time. The title of the book stems from the fact that she used to pass time by daydreaming that she could talk to herself in the mirror. Her mirror self could walk and claimed that she could too but just wasn’t trying, an idea that she believed, and felt guilty about, until her fifteenth birthday. Later in the book, when asked to take part in genetic research, she refuses on the grounds that she doesn’t want people like her and her sister eliminated from the planet. She also describes some interesting things about the MDA Telethon, including that they brought her on as a poster child, despite her not having muscular dystrophy, because they didn’t want to “tire out” kids with real muscular dystrophy, and then showed her how to look cute and beg with big eyes.

Too Late to Die Young is a collection of essays by Harriet McBryde Johnson, a disabled lawyer, that take the form of political autobiography and storytelling. She’s also the author of articles I may have linked to before, like The Disability Gulag and Unspeakable Conversations. She takes on a number of similarly weighty issues in the book.

Misc. Institution Stories

Annie's Coming Out The Spiral Staircase Lest We Forget
The packaging on my copy of Annie’s Coming Out makes it look like a bad “touching, inspirational story”. It’s really a story about injustice, and fighting injustice, and winning, and not winning. One of the co-authors, Anne McDonald, grew up in an institution with no means of communication understood by non-disabled people until she was 16. The other co-author helped McDonald and a number of other people in the institution to learn to type, some independently and some with assistance, and ended up in big trouble with the institution administration. Anne McDonald was allowed to get out after proving (at long last, after holding out in protest of the indignity of being expected to prove herself) that her typing was genuine, but other people who had been typing along with her were not allowed to type anymore. Some died in the institution.

The Spiral Staircase is one that I got while researching a presentation on institutions. It tells the story of how affected the author was by her years in a convent, and also her involvement with the psychiatric system. (Both the convent and the psychiatric system thought her epilepsy was an emotional problem, which stunned the neurologist who finally diagnosed her.) Her editors had made her write her previous book in an entirely positive light as to what leaving a convent meant in the real world, but since that book was not the truth, she went back and wrote this one.

Lest We Forget is another one I got because Cal Montgomery reviewed it. It’s an audio recording, including music and interviews with inmates of Ohio’s state developmental institutions, families, and professionals. I’ll let Cal’s review mostly speak for me on it because I haven’t quite figured out how to describe it.

New Blog: Autism Demonized

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I’m starting a new blog — that might turn into a group blogging effort — called Autism Demonized.

Some of my reasons for creating it are detailed in the introduction post. I’ve posted an example of a fairly ancient method of demonizing — in about the most literal sense possible — autistic people and other disabled people.

I hope to eventually catalogue and discuss all kinds of dehumanizing statements that we’re all depressingly used to by now. The statements that kind of make most of us wonder how such tasteless things can be said, like the “Autism is worse than cancer, AIDS, and 9/11 combined” sort of mentality. The main focus will be on autism, but it may sometimes discuss other people who’ve been dehumanized, including other disabled people.

On (not) being considered a woman…

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I’m re-watching the Community Imperative conference video, and they talk about a self-advocate named Brian Hall, born in 1939, who had died recently when the conference was being put on. He spent a good chunk of his life in Sonoma Developmental Center. He spent a lot of his time while out fighting places like that. And one of the things he said over and over, was “I want to be considered a man, and I want to be free.”

Well… I want to be considered a woman.

I was talking to a friend last night, and I tried to count, in the offline world, how many people treat me as a human being, and as an adult. When you can count them on your fingers, and remember them by name, that’s not a good sign.

This might surprise people who only know me online, and have always treated me as an adult and a person. I will try to describe what happens in my offline life.

People do not view me as capable of coming up with my own opinions. They assume that my stated opinions are because someone else told me to have them. (In some cases, they do this with me and a friend even if I’m the one who influenced her, not the other way around.) They try to separate me, sometimes forcibly, from people they assume are influencing me.

I have, as an adult, been approached with the “We have a toy in the car, would you like to see it?” routine generally reserved for children. The people doing this routine also tried to tell me that they’d “be my friends”. (While touching me and talking about sex.)

Most people speak to me in the same voice that even children shouldn’t be subjected to (but they often are).

When I read descriptions of what makes for mature, responsible adults, they often make it clear that it is impossible for me to fulfill the criteria. Only children, sometimes only infants, are said to need, or deserve, certain kinds of assistance I require, and adults are expected to know how to do things I probably am not going to learn in the near future.

My abilities, such as self-care and speech abilities, are compared to an age-based norm and I’m said to be at such-and-such a “developmental level” in each area. Areas I am not good at compared to the average person are regarded as “delayed” development, and equivalent to children the age at which the average child’s abilities superficially resemble mine in whatever way is used to test that area. I’m treated accordingly. (Aside from that, one of my re-evaluations for in-home support services describes me as presenting as “unusual, odd, bizarre, childlike”. And I guarantee you they didn’t mean “childlike sense of wonder”.)

I just got called for a phone survey two nights ago. I tried to answer in my extremely limited speech, was first asked if there was an adult in the house, then after they figured out I was an adult, they tried to find “someone else in the house” who actually understood what they were talking about, even though I understood perfectly well and there was nobody else in the house. Then they hung up on me when the two noises I was able to make weren’t sufficient to answer an either/or question. (This kind of thing plays out similarly off the phone, too.) I called them back on a relay service to explain everything to them, and they called back today but immediately hung up on me.

When I was 24 years old, I told my doctor that I might want to have children at some point in the fairly distant future, and asked her for technical information about it. Instead of giving me information, she spent the rest of the visit trying to impress upon me the fact that children are a Big Responsibility and that, in her opinion, I shouldn’t have them, ever. She assumed that I had no good reasons for considering children and that I was incapable of understanding the responsibilities involved. (One thing I am curious about is how many young mothers truly understand the responsibilities involved until they are home with their baby — and how many young mothers get such an impassioned lecture from their doctor about not understanding, unless they’re also underage.)

Very few people realize I’m as sexual as most other women my age, and when they do realize it, many would rather I weren’t, or would at least rather I not have a partner. If they find out I’m gay, there’s a higher than normal chance that they think I’m really actually straight but either “immature” or “talked into it”, or that I shouldn’t talk about it. (And all of the above can be seen as threatening or dangerous, even though it’s not. It would also be easy to prevent me from acting on it if people wanted.)

People try to make decisions for me, and if I don’t agree with their decisions, they assume I don’t have a good reason for disagreeing.

I’ve been told that people with the particular non-academic difficulties I have, are not capable of being responsible adults, and therefore simply do not belong in adult academic environments.

When I am in a situation where I need to type something and have it read by someone else, that other person quite often leaves out parts they don’t feel like saying, even though they would be furious if someone censored them in the same way.

I can’t leave the grounds of my apartment complex, alone, without someone deciding I’m lost and need protection. I have not been able to do this since I was a teenager. People do not respond to my assurances, when I can make them, that I am just fine and don’t need any help. I have even been detained against my will for this.

I’ve had complex, well-thought-out views dismissed, and then I get treated as needing to have things explained to me veeerrrryy sllloooowwwwllllyyyy. For instance, my critiques of the standard measures of cognitive skills in autistic people (critiques that are even backed up by research), have caused people to gently pat me on the arm and explain to me very slowly and carefully that some people are smarter than others and not everyone learns on the same level.

I’m frequently told that I have no right to expect what other adults like me in everything but disability expect all the time, even that I have a massive sense of entitlement for, for instance, wanting to eat regularly, or wanting people to listen to what I have to say as much as they listen to anyone else, even though it takes me longer to say it.

People often directly contradict things I say about myself that nobody else could know, and they are listened to, not me. (For instance, if someone asks how I’m doing, and I say I’m in a bad mood, someone else might say I’m actually doing great. The other person is believed over me.)

I’ve also been put on the usual pedestal of childlike innocence, and seen the nasty underside of that pedestal.

I hear things often about how much more difficult it is to go places if I’m there, generally in the same tone as someone who feels some obligation to drag their kid sister along places but doesn’t really want to. I’m expected to listen to this passively and without comment, or I’m making trouble.

I recently sat in an office asking questions about what the rules were there, and being told “The rules are to do what we tell you,” right before watching another disabled woman try to say “hi” to someone and being told that saying “hi” was inappropriate social behavior. We are expected to do this unquestioningly, and many of us do. Those who do not are treated like naughty children.

I am often the last person to be consulted when major decisions are made about how I am going to spend my life, and often the “consultation” basically consists of telling me what to do regardless of my opinion on the matter.

My primary staff person, who is on a personal level self-admittedly uncomfortable with the whole concept of power imbalances and panics at the mere mention of politics, tries to impose these views on me and generally gets away with it, since arguing can jeopardize my services. This usually takes the form of, even after seeing something blatantly (as in, the vast majority of people would recognize it as such) wrong going on in terms of prejudice or power, explaining it away in terms of individual circumstances that have nothing at all to do, ever, with prejudice or power, and implying that I have no real reason to be upset by it. Since she’s good at her job, and since contradicting her agitates her so much that large amounts of time are lost, I mostly have to sit there and take whatever convoluted excuses for other people’s behavior that she throws at me. Meanwhile she denies the very notion that she has any power in my life, because she doesn’t want power or privilege, therefore she doesn’t have it, apparently (and ignoring power is a good recipe for abusing power, something that I can’t get across to her because she doesn’t view herself as the sort to abuse power, therefore she doesn’t, or something).

If it were not this situation with the above staff, it would almost certainly be something equally problematic or worse, given the staff I’ve seen in the developmental service system. Interestingly enough, my neighbor who is classified as physically disabled for the purpose of funding (you can be one or the other here, not both, and both she and I are technically both, but we are in different systems), rarely has to contend with this level of condescencion or people trying to run her life right down to her thoughts, even though she needs staff to do similar tasks to the ones mine do. Not that she doesn’t encounter it, she just encounters it far less than I do.

I’m often given prerequisites for being considered a woman, that women who are by default considered women (which varies depending on situation), are not generally given. They can violate those prerequisites right and left, and often do, but if I violate them it justifies being treated like a child or worse. I am often required to prove I am an adult by more than showing people my ID.

There is a good chance that, if I wanted to smoke or drink, people would try very hard to prevent me from doing so, not in terms of talking me out of it but in terms of the same ways children are prevented from doing so. I don’t want to smoke or drink, but if I did, being overage would not necessarily be enough.

Similarly, there are many irresponsible choices that adults are generally allowed to make and deal with the consequences, that I have not been allowed to make at all, or when I do make them, my status as an adult is questioned.

(Example from outside my life, on that one: I remember watching a movie once, based on real events, where a married couple with intellectual disabilities had a fight, and the husband stormed off down the street while the wife yelled at him that he was stupid. The wife’s social worker ordered her to get inside the house, and she told her social worker she was not a child. The social worker said, in classic patronizing social worker tone, “You act like an adult and you get treated like an adult.” The thing is, lots of married couples have fights of the exact same kind and are not sternly told to “act like adults” before they get to stop contending with social workers ordering them to go inside. And the scene in the movie was very familiar to me from real life.)

I’m expected to experience being treated like a child as compassion and caring, when most adults (and many children) would find being treated the same way to be condescending and patronizing. If I don’t like it, it becomes my problem, somehow.

The list could go on for pages. I again know this could all come as a shock to people who only know me online. It does often come as a shock, when people who know me online get to watch how I’m treated offline. It seems that disabled people in general, and developmentally disabled people in particular, aren’t “full adults” by a lot of people’s standards. The result of all this, at any rate, is that I sometimes even find myself wondering if I am really an adult, because I rarely see any models of adulthood that include people like me, and I so rarely am treated like an adult. Of course, I am, but for anyone to have to contend with this level of ridiculousness on a regular basis seems… well… ridiculous. But it’s pretty much business as usual for me, and for others like me, so much that we often forget it’s happening and forget we could be treated any differently.

My friend, in the disability gulag, without support.

Standard

I have a friend that I left in California.

I first met him at Autreat. He was sitting there being sort of bypassed in conversations, looking blatantly autistic and blatantly institutional and blatantly reminiscent of me at my first Autreat. I asked my staff to help me talk to him (having someone around to start conversations for me can be useful). He told me that my staff and I were the first people there to make sense to him. He was living in an institution (he wasn’t sure if board and care homes counted, but I could tell by his demeanor that this one did), and was having trouble getting the services he needed to get out. There was some kind of complication. His mother.

After we got home, I got to know him more, in visits. A mutual friend would drive him to my house, and we’d hang out, or talk about things, or watch videos, or go out to eat. It was nice to talk to someone I could understand, not just on the autistic level but on the level of institution experience, which can be as much of a divide between people as autism can sometimes. From what he said, it was nice to talk to me, too, for similar reasons. He also said he viewed our visits as one of the few times he was free. He feared that this freedom would stop entirely soon. He was right.

When I left, I had my staff promise to try to help him out. But then things took an unprecedented turn, and she acquired a health problem serious enough that she can’t work, let alone go all the way to San Francisco and help my friend. She’s supposed to take it easy at home until they can figure out treatment options.

My friend also attended a support group for autistic people. His mother no longer allows him to attend. She believes that the other group members are too high-functioning and have nothing in common with him. My brother, who attends the group, told me about this.

The last I heard from our mutual friend, he only hears from my friend when he can sneak phone calls from his mother’s apartment. She hangs up the phone if she catches him calling his friends. He is trapped, and from here I feel completely impotent.

His mother believes she is doing what is best for him. She believes that he doesn’t know enough to run his own life. She has not seen firsthand people like me, who have problems in living at least as much as he does, but have our own places with people who come in or live there to help us. She has not seen how long-term institutionalization causes loss of abilities which further justifies the institutionalization, she has not seen people who once lived in institutions learning slowly to make choices and be less passive. She is probably also afraid he will abandon her if she doesn’t keep him trapped. I’m not sure she realizes that she is suffocating him, forcing him to make an impossible choice between his love for her and his desire for freedom, and then forcing him to not act on whatever choice he makes. Declaring him incapable of making or understanding choices.

He has lived in a lot of different countries.

He told me that he learned from this, that there’s never just one way to do something.

He tried to tell his social worker that, that he’d lived in a lot of different countries. (And now she was constraining him to one way of doing things. And treating him like he had no knowledge of the world.) She, he says, didn’t understand.

I told him that I wanted to visit other countries sometime. He told me that I would need to be very careful and take someone with me at all times. And the system treats him as if he’s stupid.

He liked learning about freedom, but it frustrated him. I knew it frustrated him and I was afraid to say too much, because I know that thinking about freedom, while in captivity, can be life-threatening. I told him that. He was startled and asked how I knew. I’d been locked up, too, and I know what that kind of fear is like, and how it’s necessary to mold yourself to fit confinement. I was really careful, knowing how submissive institutions can make you, to try not to lead him into saying something just to agree with me. And I told him this.

He understands more than he’s ever given credit for.

The Regional Center near where he lived kept rejecting him. It’s mainly an old category-bias: He’s in the psych system now. Despite three conditions diagnosed at various times that qualify as developmental disabilities, despite immense difficulties with daily living, community navigation, socializing, communication, and learning… they rejected him. Partly because he’s in the psych system and therefore Not Their Problem. Partly for other reasons. (Similarly, psychiatric institutions in California will often not take Regional Center clients. Which can be advantageous if you don’t want to be stuck in one.)

His mother is now keeping him in confinement “for his own good” that is stifling him. I’m afraid for him. I know that he wants to both love his mother and be free, and I don’t think she is going to allow that. His mother is getting old, and she is convinced she is the only person in the world who understands him or knows what’s good for him. She is also convinced that everyone else in the world, including everyone else he likes, is a danger to him and needs to be kept away from him. He is nearing middle age, but because he is disabled, she can get away with treating him as an unruly child, and he both loves and fears her.

She is convinced, I think, that if the situation changes, and he gets into trouble, and she dies, then he will be helpless or worse. I have seen this happen before with disabled people his age, and parents his mother’s age. Somehow it always leads to some of the worst restrictions possible — in one case an autistic woman locked in a single bare room of her own home without even toilet paper to keep her entertained, while staff got the rest of the house — and the least willingness to challenge the system even when it needed challenging.

I am afraid that her actions based on this fear are going to damage his life more than the events she fears, could. I am also afraid that her actions are going to tear him apart, or deaden him, emotionally, and he will have no friends to talk to about it because she will have kept us all away. I am afraid of what he said when we went out sometimes: “I’m afraid this isn’t real. I’m afraid this is going to be the best time of my life, and then it will be gone, and everything will go downhill from there.”

I’m also afraid because I know that if my family had not cooperated with my desire to live on my own, I could be exactly where he is now.

I don’t know what to do, or whether there is anything I can do. Praying for him, which is all I have come up with, sometimes seems like a lousy substitute for doing something.

He has been eager to have his story told to a wide audience, and at one point I tried to get an interview lined up for him with a disability rights journalist, but one thing and another made that difficult. I have not named him, although people who know him will recognize who I’m talking about, because I have not asked permission, and now may not be able to.

So I am telling as much of his story, here, as I know how. I hope one day he’ll read it.

One thing he always had a problem with in the autistic community, and it’s a problem I have run into and noticed myself, was “Where is all the practical help? These are great ideas about us not being defective and all, but what will anyone do for me right now?” I believe that these ideas will ultimately destroy the position that he’s being put in, but that’s in the long run.

But in the short run.

In the short run, there are lots of people trapped, like he is. In or barely on the edge of the disability gulag. And I’m not always sure that people who have not lived in that gulag, have noticed that they exist, or understood that every single one of them is a person. Many want and need practical help. Now, not when the ideals of our community finally seep into the real world.

Although… speaking of the ideals of our community… many in our community don’t see a problem with various parts of the gulag and assume everyone is happy there, or at least should be, because it’s our lot in life, isn’t it, or something. Many mistake passivity, terror, the lowered expectations required to survive in those places, the carving out of a life for oneself even in hell… they mistake those things for these being great places. I talked to a former prison inmate about this, and she said something similar happens, with free people not understanding at all what happens inside them, not seeing even what’s in plain sight. I agree, and don’t think most free people understand the incarcerated mind at all, and the extent and nature of what is ugly and despicable and disgusting and horrible about incarceration of any kind.

Many in our community have been taught, as everyone is, that certain kinds of people, well, that’s what you do for them, that’s how they get assistance, the only way to get out is to not be that kind of person. I’m “that kind of person,” and so are many people I have known who live both inside and outside of institutions of various sorts. One woman in the Community Imperative conference I attended in Oakland, said, that over the years, in her work in California, she has realized there’s not such a thing as a kind of person who needs to be institutionalized, and that the population of people living inside and outside of state developmental institutions is identical in all but freedom.

But right now it’s not those ideas that are running through my head the strongest.

I miss my friend. I want him to be able to come out here and visit me, like we’d talked about. But most of all I want him to have the freedom he wants, I want him to be able to live somewhere that doesn’t force him into that awful incarcerated mindset, I want him to be free long enough to get to be comfortable with himself and to have the strange privilege I do of fearing losing my freedom again.

I co-presented at that talk at Autreat, the same one he attended, the same one Jane describes here, because so much of the autistic community is so damn ignorant or complacent about this kind of life, the kind of life I’ve led, the kind of life he leads, the kind of life that so many other people are leading right now in this moment. We’re obviously under-represented out here because we’re more likely to not have learned to use computers, we’re more likely to not have access to computers, we’re more likely to in various ways not be able to interact with the autistic communities that have formed. And then when we do interact, we often find that, as Laura said:

Well, having this experience does make me pretty much inevitably different. I’m not the same as other people. And I’m aware in many ways, whenever I deal with people, especially politically, I am aware that there is a whole… there is an experience that I have had that they have not had. And it’s usually very obvious to me that there’s how it is that they have not… it’s just, I don’t know how to describe it, I really don’t. I wish I had a better way of describing it. But I can tell that I have had an experience that is not theirs, that my… oh gee.

There’s, I almost want to call it a level of naïveté about what can be, in people who have not been through this. A kind of, I’m trying to describe something that I sort of know it when I see it but I don’t know… I guess many people don’t live with… I am trying to find words for concepts that… it’s a level of naïveté. A failure to understand how bad it is or can be. A failure to understand how the issues are really that of life and death, a failure to understand the importance of… yes, a failure to understand. There’s a level of unseriousness there, a level of too much faith in the system as it is now, too much misplaced faith in it. And too much, I would almost call it eagerness to try to prove or establish that they are not like these people almost. Like that these people are not them, that they’re better than people who’ve been through that and in any case those people deserve it and in any case it was good for them, and in any case, you know, and if it wasn’t good for them it was not a systemic issue. It was just, that one instance. That exception.

So, many of us even with the access to these groups, end up sticking to the fringes, or not talking about it, especially if we view our experiences there as bad. We run into a lot of social norms that exclude us unintentionally, in similar ways to how non-autistic people can inadvertently exclude autistic people. And nobody likes being told they’re being exclusionary, so just as non-autistic people can get angry at autistic people asking to be included, and dismiss what we say, so can autistic people dismiss the experiences and personalities and exclusion of institution survivors. Thus, it’s sometimes easier to be passive and silent.

But we’re here. The lucky ones, like me, have gotten away for the most part — whether by becoming the sort of person nobody wants to lock up (as some people I know have done), or by finding places that don’t lock people like us up (as I have done). The unlucky ones still live it in various forms. And my friend is at the moment not one of the lucky ones. I just don’t know what to do beyond tell this much of his story, the parts I could remember just now. I want to be like Ron Weasley and show up at his window in a flying car, but that’s how things work in books, and real life is more complicated.

Anyone who wonders why I talk about this stuff all the time? Stop wondering. It’s not some kind of twisted hatred or bitterness that some people make it out to be, it’s love. I can’t explain it clearer than that.

Tags: institutions autism disability autismcommunities autreat friends regionalcenter services disabilitygulag harrietmcbrydejohnson lauratisoncik janemeyerding