Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.

That’s from an Alternet article that still seems to view doing the above as a good thing. The article even justifies and glorifies the quote in that video from the woman who considered killing her child. Apparently it’s “brave” to say something like that, and that makes it okay. (I don’t think so.) Apparently, also, nearly all parents of autistic kids have fantasized about killing us at one point or another and would know that if they looked hard enough. I’m not even going to dignify that last idea with a response.

But aside from the cultural shift towards basically “the courage of emotional honesty” being enough in what’s obviously a propaganda piece, read that paragraph I quoted from the article. They artificially made themselves and their houses look more unkempt than they were, and they kept the supports they normally use out of the way in order to get footage of autistic people — who were forced into this situation by the people making the film, mind you, which is beyond exploitative — doing things that made people feel sorry for the parents.

This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look. Why aren’t more people complaining?

Just imagine being an autistic kid and having your parents screw up your routine and make themselves look worse off than they are in order to talk about how miserable your presence in their lives is and how one of them has even thought of killing you. So that this can be shown to an entire nation. Yeah, doesn’t sound good to me either.

autistics.org has put out an editorial on the letter A Danger In Speaking that was sent out by Tom McKean to various leaders in the autism community, urging them to get formal diagnoses to prove that people are autistic before they speak at conferences.

Details can be read in that editorial called, Who can call themselves autistic?

To clear up a few misconceptions before they start: We’d have written this no matter who wrote that letter. This is not personal in that sense. But it’s certainly personal in the sense that it affects any autistic person who wants to speak publicly as autistic. We now have an autistic person encouraging people to demand private medical records and early histories from autistic people before we can be taken seriously, and that could be taken as the carte blanche conference organizers and such want.

The point in refusing to give out such credentials in that context, is that not everyone has them. It’s not right that, for instance, I could speak at an autism conference about being autistic, but someone just like me with no official diagnosis (or with a misdiagnosis) couldn’t. It’s not even right that a person be required to give out private information of that nature, that they could have a lot of good reasons for not divulging. In refusing to do so, we’re refusing to play that game of legitimizing people’s claim to being autistic, and therefore apparently our opinions, based on official medical labeling.

So, if you want to sign it (after you’ve read it), email whoisautistic@gmail.com.

Apparently the misconceptions were not cleared up by the paragraph above, so I’ll include the below response I gave elsewhere to the fact that McKean has taken this as an extension of an old personal conflict with a couple of us.  The summary, in case you don’t want to read the long version, is that failing to write something because someone could construe it as a personal attack is just as bad as writing something as a personal attack, and we wrote this as a response to the opinions, not the particular person holding them:

Read the rest of this entry →

When I first got involved with the autistic community, I heard of all these wonderful stories of autistic people visiting each other and doing all kinds of things. I was quite envious and also worried that I would never get the chance to do any of those things. The fact that my initial visits to meetings and conventions of autistic people were fairly disastrous from my perspective (especially in terms of what I got out of them versus what I lost from them) confirmed my impression that I was just somehow not the sort of person this happened to.

It should be understood that at that time in my life my sense of self-worth was, like that of many auties, somewhere lower than dirt and I honestly had no clue why anyone would even be interested in me. So it was a natural conclusion that these interesting and cool and exciting meetings happened to other people, not to me.

Now I live near an autistic friend that I’d visited more than once before moving here. I have been to places where autistic people gathered for various events. I’ve met several parents I like. I have had several autistic people stop by my apartment, some of them traveling long distances to do so on the basis of Internet friendships. And now people are coming to see me during Autreat season and such: I’ve finally gotten to meet Kathy Grant (who is very obviously autistic and very cool), and a couple people I met at Autreat a few years ago are stopping by next weekend.

In other words, I actually have somewhat of a social life. The people who hang out with me are interesting people and they are not using me or messing with my head. They seem to show up because they like me and I like them. Not all of them are close friends, some of them are acquaintances.

Even when I used to dream what I thought was a futile dream of meeting people who understood me on certain levels most people didn’t, or who could at least tolerate these aspects of me, I never expected this. I was told in so many ways never to expect it, even prevented in many ways from forming bonds that might otherwise have formed, that when it happened I almost didn’t believe it was happening. I didn’t expect to have both close friends and friendly acquaintances. Meeting one person would have been more than enough for me. This was simply not in any of my predictions, and in seeing those stories of meeting people I had no reason to believe anything like that would happen to me.

The interesting thing to me, is that my getting to know people has happened outside of the formalized group settings I was told to expect this from. I have never experienced these things at a support group or a convention. I have a lot of trouble getting to know people in places like that. Even when I’ve met interesting people in groups, it’s tended to be things like a local public book signing with prior Internet warning, or small numbers of people converging on where I live or me being one of small numbers of people converging on where someone else lives. Something relatively unstructured and without clear edges and rules and so forth, or where we can make up our own structure as we go along.

I’ve written before about the few friendships I sort of managed in institutions, but the truth is that most potential for friendship was utterly destroyed by staff before it even started. I was incredibly, incredibly isolated, living among a lot of other incredibly, incredibly isolated people. A friend with similar experiences said, “It’s amazing how they can put all these people in one room and make every single one of them feel alone.”

People were encouraged by staff not to speak to me. They were also encouraged to loudly proclaim that I clearly had no interest in, or sometimes awareness of, other people. I had almost no means of combatting this, since I knew nothing of my outside appearance, which I now recognize included not talking, not looking at anyone directly, not responding to people in ways they understood, and not moving a whole lot, much of the time. The few people I got to know were people who made an immense effort and ignored staff, and most of that didn’t last long before being forcibly broken up.

There was the girl who sat next to me and chattered at me for hours and got excited at even minimal response. Staff told her off. There was the roommate who developed a secret code with me and helped me raise hell. Staff separated us and made sure we both heard that we had nothing in common. There was the autistic boy who ran into my room and grabbed my hand whenever staff wanted to tie him down to keep him from sitting up and rocking. He got tied down. There was the girl who made a strong effort to talk to me and include me in activities at the group home. I was explicitly told by a psychologist there that I was disgusting, totally inappropriate, definitely not friend material, and that she only talked to me because there was nobody else to talk to. And then, of course, there were a few guys who wanted sexual relations with me, I tried really hard to actively avoid them, and staff couldn’t see why and viewed not wanting to be groped as deviant behavior on my part.

These were, on the whole, tiny bits of interaction in a very long sea of non-interaction. That non-interaction was reinforced by the environment, reinforced by staff, and reinforced by the fact that most people viewed my appearance as meaning that I had no interest in, possibly no awareness of, the fact that they existed.

And I was sometimes painfully aware of that isolation, despite anything anyone might claim about what I was capable of at the time. I could not understand what it was that made people not want to be friends with me, nor could I even appear as if I was interested in making friends. When I finally was able to ask a few questions about that stuff, I was told, almost accusingly, that I was clearly totally happy alone and clearly didn’t want things like friends in my life. One person told me I just gave off an aura of aloofness. I was baffled. In many ways, I still am.

This, by the way, is why I think that measuring social desire by appearance is a bunch of crap. It is true, there have been times when I was much happier on my own. There have been times when I could not conceive of “social,” or of “people,” or of a lot of things that most people find obvious (not just in the social realm).

But I read things that classify autistic people based on how we appear socially, and I know that I don’t fit. People talk about one kind of autie “wanting to be social and making odd social approaches but bungling them,” and another kind of autie “not wanting to be social and maybe not even understanding ‘social’,” and I see myself sitting there being described as being in the second group because unlike the first I could not even translate my social desire into a social approach that anyone could see. Merely staying in the same room and people and thinking about them does not apparently make a person “look social,” but that is what I thought for a long time, and I was shocked to find out that I was regarded as very asocial during times when I was more socially engaged than I’d ever been in my life.

At any rate, when I got out, much of my social interaction was with people who abused or exploited me. Even my entrance to the autism community involved run-ins with people who, whatever their intentions might have been, valued me as a textbook rather than as a person. I was barely starting to figure out who I was and how to fit writing around myself instead of around stored brainwashing, and there were people asking me for answers I couldn’t give them. I found out the extent of the gap when I started becoming more myself than I had ever been in print, and people were telling me they didn’t much like me anymore. Now that I had opinions, now that I was becoming marginally happier, now that I was not presenting as simply a swirling mass of confused things that I’d been taught to say and do, I was far less acceptable to many of the people who had liked me as a human textbook.

All that is to say, that going from that background to having friends and friendly acquaintances was an enormous leap. I didn’t really believe it at first. I kept wondering where the catch was, what they were going to expect me to do, or what they were going to do to me. I even wondered at times whether they were people I used to know pulling an elaborate prank on me, because they knew things about me I never had to tell them, and because some of the people I’d used to know had pulled far more elaborate and cruel pranks than that on people.

Many of the friendships started with a kind of eagerness on both sides that I’ve come to associate with people who are deprived of friends for a very long time. Interacting with each other until one or both dropped from exhaustion or went into shutdown was not uncommon. I think a lot of us were afraid that if we stopped to take a break, the whole thing would disappear.

Also, many were used to a different kind of social interaction required of them from a non-autistic world, such as at their jobs, or institutions, or school. One man said he enjoyed coming over because it was “autistic space” for once even if it was only two of us. Another man, who has since been prevented from contact with the majority of his friends, was so frantic to drink everything in before the inevitable return to the very restricted life he lived in an institution, that he didn’t fully experience them until he got bad to said institution. He often cried and asked us if we were a dream. Many people viewed being around auties or autie-friendly people as a refuge from more typical demands on interaction.

I think I’m finally at the point where I rarely ask my friends, “Why on earth do you like me?” I don’t think, though, that I’m ever going to lose the kind of gratitude I have for the fact that something like this exists. It’s not something I’ve ever been able to take for granted in my life and I don’t think I ever could. I’m also learning a lot about how to be a friend that I never had the opportunity to learn before.

I worry a lot though about people who are in the position I was in a few years ago, going “How on earth do these people all get to know each other?” or, back a few more years, “Am I ever going to meet anyone who remotely understands how I operate?” I’m afraid that loneliness among autistic people, including among people considered too severely autistic to want friends, is rampant, more the rule than the exception.

I’m afraid that many autistic people will never be able to use the Internet to get to know each other. When I was interviewed for NPR and asked about the role of the Internet, I actually gave a much more detailed answer. I tried to point out that some autistic people can’t read, or can’t write, or can’t use any particular standard mode of language. For a long time I would not have been able to consistently use language to connect to people, and I was still lonely: “I am reaching out to you/Through the walls of my body/But my arms are not my heart/In the end you must find me.” I knew autistic people who may or may not have had typical language but certainly had loneliness. Only the part about the Internet being good for a very specific kind of autistic person I mentioned made it onto the air.

I worry also that for many such autistic people, things will become mechanized the way they do in systems. “Here’s your friends program.” “Here’s your social skills program.” “Here’s your recreational program.” “Here’s your support group.” I know that I have never thrived in such environments, even when they are created by autistic people. There’s something about the structure that wears me down and switches me off. There’s something about the social conventions, even of other autistic people, that wipes me out and gives me very little in return, allows also me to give very little to anyone else. For the most part I no longer subject myself to such things, and I cannot imagine being alone in that.

So that does make me wonder, how all those autistic people who were in roughly my position before, are going to end up in situations like I have now, where I have a lot of people who seem to know and like me because I’m me, not because of some use they have for me. Or whatever other social situations they might want, or might want if they had the chance to experience it, given that if they’re anything like me they may have little idea what good social experiences even look like until they stumble across one.

In the end, this is not a “Wow, I’ve come home, I’ve found this wonderful community” post, even though it’s definitely a “Wow, I can actually make friends” post. I’ve read about those experiences, and I respect them, but they are not mine. I will probably never feel ‘at home’ in the autistic community, or the disability community, or the gay community, or any of the other communities I’m supposedly part of. And I am too aware of how many people are shut out by these communities, to become fully comfortable in them, although I will continue trying to broaden them.

A couple of edits as of September 19, 2006:

1. If you’re coming here in a link from an essay by Dinah Murray, be aware that I don’t subscribe to a view of autism that hinges on having a one-track mind. I don’t think that one-track minds are bad (someone in comments asked me what’s wrong with them — nothing), but I don’t think we necessarily have one. I don’t think our processing resources are necessarily any more limited, I suspect they’re just, if anything, more swamped.

2. My post Storks has an analogy that I’m more satisfied with than this one.

Anyway, on to the original post:

Someone’s linked to The Spoon Theory again, and I really need to get my act, and spoons, together, to explain my version of the spoon theory. This won’t make much sense until you read the link, but be aware I don’t necessarily attach the emotions to spoonlessness that the author of that link does. (Nor do I think this analogy is perfect even when I extend it the way I have in this post, it’s an analogy, analogies are inherently problematic.)

One thing a friend with an unspecified autoimmune disease (been speculated as rheumatoid arthritis and then as Sjogren’s, but it’s unclear what exactly it is) pointed out, first off, is that you can be going through a day with nine spoons, and then suddenly you’re down to no spoons a few minutes later with no warning or ability to prepare yourself. She said there is an element of total randomness that the spoon theory doesn’t adequately capture.

Something I find that it doesn’t capture, is that not all spoons are the same.

I have (in my interactions with a world set up for non-disabled, non-autistic people) spoons for overall energy (probably most similar to the “spoons” in the original article), spoons for language and symbol, spoons for processing input, spoons for deliberate movement, spoons for abstraction, spoons for deliberate remembering, and so forth. These spoons are all different colors.

Any given activity is going to require several kinds of spoons. There is sometimes a “spoon bank” at which certain colors of spoons can be exchanged for other colors, but the exchange rates vary wildly from moment to moment and can get so extreme as to be effectively non-existent.

For that matter, there are certain kinds of spoons that are just going to be drained even if I do nothing all day. Spoons for processing input are under a constant drain during all of my waking hours. Certain kinds of input make them disappear faster, and certain kinds make them disappear slower. Some kinds of input can make them disappear altogether.

And then doing certain things is going to cause different rates of spoon-drainage. If I want to hear a voice as just background equivalent to the sound of water flowing, it’s going to cost fewer spoons than if I want to hear a voice as words, and it’s going to cost even more spoons to discern what the words actually are, still more to put them in context as meaning something, and so forth. (And it also begins to involve more and more spoons of different colors, in that case.)

As far as the spoon bank goes, a frequent usage of it is to trade off between moving and perceiving. My brain can exchange all my movement spoons to allow me to perceive more about my surroundings. This renders me totally incapable of voluntary movement until and unless other spoons can take their place. Sometimes it gets exchanged back, and suddenly there is little to no abstraction and little to no understanding of my surroundings while my body is walking into walls or something. And around and around all that goes.

And sometimes I’m extremely able to do one thing and not at all able to do another that everyone else seems to think is related. More spoon stuff.

So a good chunk of my time goes to figuring out ways of doing things that minimize the amount of spoons necessary to do something. Lest anyone claim I am incapable of multitasking, dealing with change, and so forth, look at all those spoons I’m juggling all the time and all the flux this is constantly in. That I have to juggle them for much smaller activities than most people do, including probably smaller than the author of the Spoon Theory is dealing with, does not mean that I’m not in a constant state of change and flux and multitasking. And keep in mind the randomness my friend described, and multiply that by all kinds of different spoons.

This is why I frequently say that were it possible to take a non-disabled, non-autistic person and stick them into my body, they’d be totally unable to do or understand anything. I have 25 years in this body, I have evolved a very streamlined and efficient way of doing things over that time, and I make use of everything I can conceivably make use of.

Which actually brings me to a book I read relatively recently. (No, not the one I mentioned in my previous post. Still haven’t got all the spoons up for that one.) It’s called Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron.

I find books like this interesting. Not just this one, but ones that are targeted at least partially at autistic people, and aim to teach us codes of social behavior. I don’t think that these are bad codes to know, and they can be very interesting and useful to find out about. But I think there’s a danger in assuming that everyone should follow them, or that everyone should follow the same social codes. Or even that everyone can follow them. I’m all for informed choice, which includes the informed part, but imposing these as standards on everyone would not work. I find it far more important and feasible to, where possible, be considerate of other people, than to be considerate of them in a specific way according to a specific code. If I’m very much up to it, I might follow a specific code, but it simply can’t be counted on.

I’m going to use some examples from the book:

Don’t spit, burp, belch or pass gas in public settings.

Okay… I was shocked when I found out that most people view burping, belching, and passing gas as volitional behaviors that can be stopped and started at will. Most people must be able to pay all kinds of attention to their digestive systems, and then clench them or something, in ways that just aren’t possible for me. I’ve gotten yelled at or chastised for all of the above (except spitting, which I don’t really do) many times and it has not helped me one bit to figure out how I’m supposed to stop my body from doing whatever it has to to expel gas.

Aside from that, I suspect my body has higher priorities in public. Like making sure I’m moving in the right direction. No spoons left over for constant monitoring of unpredictable gases in my body.

Don’t eat with your hands (unless it’s ‘finger food’ or things like hot dogs, burgers, etc.).

And this one is a coordination issue.

I can’t always get utensils to obey me. When utensils fail, hands have to do. This is another thing that I’ve been chastised for, even put on behavior programs for, and it still hasn’t magically made me capable of getting everything onto a fork that people assume I should be able to get onto a fork. Nor of always remembering what a fork is for to begin with.

Don’t stare at other people.

This one, of course, requires differentiating people from all other objects in the room, and then remembering an abstract rule about not staring at them.

Don’t scratch your private parts in public.

If I have an itch, I’m not generally going to remember abstractions about whether or not scratching is a good idea, and I’m not likely to remember abstractions about which parts of the body are private, either. I’m going to be too busy hunting it down and trying to get my hand to wherever it is. I have breast eczema so I’m aware in general that I do a lot of scratching in what’s considered a private area, but the only thing I can do about this is stop the itching.

Say “please” and “thank you.”

Okay, this one is a matter of remembering an abstract rule at a given time. I do sometimes say these words, but they’re by no means a given, and their absence doesn’t mean anything.

Interestingly, the book also says something where I come down on the opposite side:

You can’t control your feelings, but you can control your responses.

Actually, I think it is possible to control feelings. Controlling responses is good, but it’s also possible to control feelings, which are after all an internal response.

Autism isn’t an excuse for being dirty or smelly. If sensory issues are involved, there are all sorts of grooming products now to get around them: dry shampoos, soap towelettes, different flavored/textured toothpastes. Even if you wear the same three outfits all the time, keeping them clean is just a matter of soap and water and a little effort.

Okay. Autism not being an excuse for not getting these things done, might explain why I need someone to assist me in the shower as well as to be handed the implements to brush my teeth if I’m going to do it every day. It might also explain why my friend had such bad sores from lack of hygiene that she was getting dangerous infections. It must, at any rate, be why the person who first talked to her about it tried to claim it was a lifestyle choice, and delayed her ability to get services for some time on that subjective judgement.

Later in the book, Temple Grandin writes a section that has me totally confused:

Interestingly enough (and mirroring the black-and-white thinking patterns that are characteristic of the disorder), there are Aspies who feel “everyone else” should do the conforming and changing, and that people with autism and Asperger’s are just fine the way they are — no changes needed, no intervention required. This is an extreme perspective that in my opinion does not take into account the entire spectrum of individuals with autism, and especially disregards the needs of those who function on the lower end of the autism spectrum.

I suppose I should restate that I’ve never had this belief, although it’s often attributed to me. As I said, I juggle spoons for all it’s worth, which means I’m constantly adapting to a fairly hostile society. I don’t make it nearly as close to Temple Grandin’s level of adaptation in that regard (even as described at my age), and in her eyes that probably makes me on a “lower” end of the “spectrum” than she is, even though I don’t make distinctions like that.

But, okay, if I am constantly growing and adapting to the best of my ability, and the best of my ability falls this short of expectation, doesn’t Grandin’s view kind of disregard me? I would think that other people need to adapt to me to the best of their abilities as well, and especially so if my adaptation to them falls as short as it apparently does in their eyes. I would think, in fact, that the less able to adapt to the typical world (as it stands now) someone is, the more the typical world needs to adapt to that person.

I’m not trying to say that these things aren’t useful to know about, or that the book isn’t useful in that regard, at least for knowing a particular segment of American culture’s unwritten rules. But most of the autistic people I know, are not in a position to do many of these things, despite the fact that they are presented in absolutes as our responsibility to somehow do Or Else. And apparently autism is merely an excuse in these matters, not to try doing them.

Back to the colored spoons.

Many autistic people, like me, are busy juggling a lot of spoons of a lot of colors just to do some of the really basic stuff. A lot of the things covered in this book seem frankly well over my head. I may be able to understand them in the abstract, but it would be very difficult to put many of them into practice. Not because I’m a lazy, unmotivated slacker, but because of this whole thing about spoon conservation:

I’m using a fair amount of spoons just understanding (for some senses of “understanding”) my surroundings, moving my body around, and avoiding some of the absolute most destructive, dangerous, or inconsiderate things I could do: Hitting my head, physically hurting other people, screaming, taking my clothes off, or urinating in public.
Telling my eyes or ears to scan around for human beings takes a large number of spoons. Telling my abstraction and memory to call up a long list of rules for being around human beings costs even more.

These things are not sustainable. They’re not always even possible. As the song goes, “It’s a nice idea… in theory.” In reality, I’m going to walk past people without noticing that they’re people at all. In reality, if I’m walking on foot, I’m going to possibly walk straight into people and be unable to avoid it. In reality, I’m not going to necessarily recognize and respond to a “familiar” voice calling my name in the midst of chaos.

I’ve seen a lot of emphasis lately not just in this book, on learning social graces of various kinds. Aside from being a very culture-specific thing to learn in many instances, the practical application of these social graces is an impossibility or only partial possibility for many people. I can understand learning to apply them if you’re capable and willing to apply them, and I don’t think there’s anything wrong with knowing them. But I do worry about the situation of the many people who won’t be able to apply them. Are people who to the best of our ability juggle tons of spoons for little increments of typical activities, going to be simply the rude, lazy, inconsiderate kinds of auties, who won’t accept responsibility and use autism as an excuse?

I know that’s not what I am, at any rate, because I know that I am always learning and growing, and I know that I am doing my best at the spoon-juggling, being as efficient and frugal with my spoons as I can. But I wonder what attitudes towards people like me are going to be. Are they going to be simply dismissal, or will there be some understanding there of the fact that many of us are going to look at books like this and go “Wow, uh, I’m too busy juggling the basics to have nearly enough abstraction-spoons for this”? Is there going to be some hierarchy where people who can do all these things are better? I hope not.

A famous quote attributed to Susan B. Anthony (who probably, like most feminists of her time, had atrocious views on disability, among other things, but oh well):

Cautious, careful people always casting about to preserve their reputation or social standing never can bring about reform. Those who are really in earnest are willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathies with despised ideas and their advocates, and bear the consequences.

Some sources say “social standards,” others say “social standing”.

I’ve seen a several blog entries lately that seem to express a high degree of concern and disturbedness about the fact that there are differing opinions in the “autism community,” and that said “community” is so often divided along these lines. There is a lot of emphasis on finding our common ground. And I sense a lot of equating opinions strongly presented with hostility, and opinions strongly held with dogmatism, without apparent recognition that a strongly presented, strongly held opinion may be nuanced, may be non-hostile in nature, and so forth.

All I know is that as long as autistic people are presented day in and day out with the idea that we need a cure, or at least to be more like non-autistic people, in order to be happy…

As long as various forms of institutions and involuntary segregation are presented as a good thing for people…

As long as people go on being tortured in the name of treatment…

As long as we are viewed in a highly medicalized way all-around…

As long as we are taught to be ashamed of who we are…

As long as murders of people like us keep being excused…

As long as when we die people say we’re better off...

As long as people are forcing dangerous or harmful things onto us in the hope that we will “get better” and saying it’s all worth it...

As long as our existing or potential communication systems and learning styles go almost totally denied…

As long as children continue to grow up believing in an awful future and become suicidal because they see nothing different…

As long as we’re shut out of most people’s conception of a contributing member of society unless we can manage to run ourselves ragged participating in a broken system…

As long as we hold no power or only token power in organizations that claim to represent our interests…

As long as the only ones of us who are considered acceptable are those who toe the party line of people who most certainly do not represent our best interests…

As long as there are people working to make sure that people like us are prevented before we’re even born, possibly before we’re even conceived, because it would just be oh-so-horrible to have more of us in the world…

As long as we are considered merely a drain on the more worthwhile members of society…

As long as we are routinely brutalized from childhood to adulthood with very little recourse…

And as long as the most powerful people support most of the above things in regard to us and get away with it…

…then opposing even one of these things (let alone more than one) in any remotely powerful way is going to be considered by many to be mean, hostile, hateful, disgusting, in poor taste, infighting, snobbish, self-righteous, destroying unity, whiny, ignoring the needs of low-functioning autistics (as if people in that grouping don’t need rights), and many, many other terms that I have heard both autistic and non-autistic people use to describe autistic people who go against the status quo.

…then there will be people who will insist that in order for us to get along with each other, we must try not to oppose any of these things too loudly.

…then there will be people who will insist that when we oppose these things that we are destroying real unity, instead of a mere illusion of unity brought on by the fact that we are silenced.

…then autistic and disabled people will continue to have a really crappy place in the world.

…then I and many others will continue to speak out against these things and for a world that is better, and we will continue to fight in any reasonable way we know how for this to happen, and many of us will continue to do this out of love (not the emotion, something else) rather than out of any of the things that people are always claiming.

Sure, I will sometimes make alliances with people who don’t agree with me, when working on specific issues. That’s life. But I will continue to try to discern what the right thing to do is, and do it, rather than be led by the allure of social acceptance in the form of being considered neutral or impartial. Some people will assume this means I won’t associate with people with differing opinions, and that’s not the case, but, that’s just one more false assumption to join the list above. And there are more important things in the world than avoiding doing the right thing because you’re scared people will make assumptions about you.

The “autism community” may or may not have various things in common. I don’t even believe it to be one community. But I know that if I were to do what it would probably want of me in order to be accepted by the most currently politically powerful people in it, I would simply be swallowed up by it and be one more voice that didn’t get heard. That’s what happens when your voice is one of dissent and you allow it to be silenced: you just get sucked into the majority view by default.

A quote by an autistic person has stuck around for a long time in my head: I don’t get “lost in a world of my own” either. I don’t need to take a bloody compass with me when I am having a think.

The “in their own world” stuff has always been completely lost on me. When I first heard it, I thought people were talking about astronomy or something. But I hear it again and again, by people who are supposed to know something about autism.

The latest autism podcast is about moving your child up the autism spectrum. The problematic concepts don’t seem to stop with the title. The basic idea of autism is something like, “Here’s the triad of impairments. Here’s what we call low and high functioning for each one of them. Here’s some really odd ideas we have about what all this behavior means in the first place. Here’s how we act on those odd ideas to change the behavior to things more towards what we consider high functioning.”

But it’s one of the odd ideas I want to talk about.

They talk about a thing they call “our world,” and how they want to get autistic people “out of their own worlds” and into “our world”.

Some quotes (the bold used for emphasis is my own):

He wasn’t completely in his own world with the flapping or the swaying back and forth, like I’ve seen other kids.

Then:

A lot of kids are on the low end of the spectrum because they don’t have that communication piece, they don’t know how to get their wants and needs met, they’ve found their own ways to get out of our world.

Then:

Kids have a lot of ritualistic behaviors and that repetitive movement stuff because of a lack of understanding of what they’re supposed to do in the world, and when you increase their ability to communicate, and when you also increase you as something social in their life, then you start seeing that ritualistic behavior go down. Because they have more of an understanding for the world. […] So without the stress you stop seeing them in their own worlds with the repetitive movements, you start seeing them a little more in your world, less repetitive movements or ritualistic behaviors and more communication.

Okay… am I getting it correct that apparently when my body is moving in some repetitive way I’m supposed to disappear to some other planet or something? And I’m not understanding as much of my environment, or something? And if I stop moving in assorted repetitive ways, that’s supposed to mean I’m more engaged with… something or other?

Because that makes no sense to me. I’d almost start to cynically wonder if “in their own world” is a filler term used by people who have no explanation for something and therefore want to invent one, but I’d like to know what it’s actually supposed to refer to, because I really, really don’t disappear anywhere just because I’m rocking or flapping my hands or something.

I’ve asked people about this, and they’ve pointed me at people. And I’m somehow supposed to just understand by looking at people what this “own world” thing is that the people I’m looking at are supposedly in. Or it’s supposed to immediately convey a sense of urgency. And I don’t see interdimensional portals around most of them, nor do I feel urgent needs to feel urgent around them or something. So I’m going to ask again:

Where is this world we’re supposed to be in, and what does it have to do with flapping our hands and stuff? (As a bonus question, I guess, why would understanding my environment better supposedly have made me stop doing all the repetitive motions I never stopped?)

At Autreat, they had a panel in which non-autistic people could be asked questions, similar to the standard panels in which autistic people are asked questions at autism conferences. They transcribed it onto an IRC channel so that people not there could read and ask questions. Here’s one of the questions, and one of the answers:

JOEL SMITH (AUDIENCE MEMBER): ASKED PANELISTS IF THEY HAD PROOF OF THEIR NT DIAGNOSIS

CHLOE: (ANSWERING JOEL’S QUESTION NON-RHETORICALLY) NOT DIAGNOSED BUT IT IS CLEARLY THE WAY I OPERATE SO I AM COMFORTABLE IDENTIFYING MYSELF AS SUCH

That kind of answer is acceptable from non-autistic people. When autistic people say it, however, it’s not good enough. The default seems to be, non-autistic until proven otherwise.

I have, for reference, proof of my diagnosis, including a developmental disability waiver with “AUTISTIC DISORDER” written on it. I don’t, however, give it out. I do this on principle: People just as autistic as I am can lack a diagnosis (yes, really), and they have just as much of a potentially valid viewpoint on being autistic as I do. Moreover, whether my opinions are right or wrong does not always hinge on whether or not I am autistic to begin with.

Non-autistic people are not expected to prove that they are not autistic (even in some cases where they probably should be expected to).

Parents of autistic children are not expected to prove parenthood, in order to give opinions on autism (even in some cases where they probably should be expected to).

Even autism researchers seem to be granted an incredibly amount of immunity to genuine skepticism about who they say they are.

Yet somehow, with autistic people, it’s “How can you possibly say you’re autistic?” “Autistics shouldn’t be listened to on anything unless they provide proof of diagnosis.” “People are just pretending to be autistic so they can say these anti-cure things.” (When the only known instance I know of someone definitely pretending to be a “kind” of autistic they weren’t, and thus possibly suspect about any other claims they’ve made, is someone who was saying pro-cure stuff, which never gets questioned by these same people.)

So, while a few people have seen my proof of diagnosis, mostly those who have to, I’m unwilling to simply hand it out to anyone who claims that I’m not for real. That’s rude and an invasion of privacy to expect to see someone else’s medical records on demand when you have no medical connection to them and no reason (beyond disagreeing with them) to suspect they’re a liar. Nobody online ever questions that I get migraines, I noticed, and they’re even more subjective from the outside than being autistic is.

Edited to add:  Someone pointed out I should give this context.  A letter recently went out from a well-known autistic speaker to leaders in the autism community, urging that conferences receive proof of diagnosis, as well as possibly information about the person’s educational history, and other private, confidential information, before allowing people to represent themselves as autistic.  The letter also expressed skepticism about people’s diagnosis the later in life the diagnosis was.  Given that even those diagnosed in childhood may have their early records destroyed, given that even blatantly autistic people over a certain age were commonly missed for a whole number of reasons, and given that not everyone has the money or resources to seek a diagnosis, many in the autistic community view this as unfair.  The autistic man who asked the question of the NT on the panel had an early childhood diagnosis where the records were destroyed and does not want to be forced to produce an adult re-diagnosis in order to have his views listened to.  But this is a wider issue that affects the credibility and privacy of all autistic people.

Stuff on My Cat. It’s apparently a blog in which people put objects on top of their cats or clothes on their cats and take pictures of them.

It’s hard to describe what’s wrong here.

Maybe it’s that I’ve had people put me into various poses when I couldn’t do anything about it, and thought it was hilarious.

Maybe it’s that I know a guy whose staff treat him like a living doll, and give him things like mohawks and dress him in strange clothes for fun, when he doesn’t ask for any of this.

Maybe it’s that I see the look on those cats’ faces, and it reminds me of the way my cat looks when someone picks her up without asking permission. And the fact that people like that always seem oblivious to the fact that she’s a living creature, not a toy.

I bet it’s the same sensation in my stomach that some people got in their own stomachs, when they thought that I didn’t really write Getting the Truth Out, and thought that I was merely having my picture exploited.

Cats can’t tell you, in English, to stop it, and a lot of people take the inability to say “Stop it” as an invitation to do whatever you want. A cat’s clear “No!” signals can be ignored more easily than a human saying “no,” or even “Stop that or I’ll report you for assault.” A lot of people think that once speech isn’t there, you’re an object, not a person.

That must be why that site makes me queasy. There’s something really not right, not about the website itself, but about the mentality that makes treating living creatures like dolls and stuffed animals, okay. That mentality seems to be pervasive, especially towards people of whatever species who can’t talk back in unambiguous English, or who have so little power that what they say in English can be “safely” ignored (“English” here is because I’m in America, it’d be other languages elsewhere obviously).

(Side note:  The solution to this is much more about shifting power imbalances, than teaching all animals and non-speaking people their “native language”.  There will always be animals and non-speaking people who can’t speak their “native languages”.  Making it totally socially unacceptable to treat people like dolls is feasible, training everyone to say things in the majority language is not.)

I’m starting to put together a page of links to stuff (webpages and books) written by autistic people who use augmentative communication (at least a good chunk of the time, even when not always). The motivation behind this is similar to my motivation behind putting together the Autistic Authors Booklist, which was largely because people were always acting like only three autistic authors existed and it was getting really tiresome when I had books by easily dozens, and also because people were under the impression that vastly more female than male authors existed which also turned out not to be the case.

In this case, I recently got a comment along the lines of, “So if you communicate by typing, where are the rest of the people like you?” And I realized I’d known people before who’d never heard of any auties who couldn’t speak having written any books.

There are a lot of them, with varying degrees of usable speech, varying times of acquiring speech, varying kinds of communication devices, varying levels of loss of speech, various levels of physical and/or emotional independence accessing communication devices, etc. And of course most of those can vary within one person, so there’s people who speak and type independently and use facilitated communication, and it can surprise people in which order some learned.

This is the permanent page on this blog I’m using for this at the moment.

That’s the list I’ve come up with so far.

I know I’m leaving a lot of people out. It was easiest to find FC users because of the FC Institute’s website having a lot of their writing. I know there’s others, as well as people who don’t use FC at all but use augmentative communication. I’d be interested in knowing who I missed (with links to their writing) so I can add them to that list, as well as any writing I’ve missed by the people on the list already.

And as reference, one thing I’m not doing is trying to say that this makes anyone more or less “really” autistic, more or less credible, or anything else. So I’m not too interested in engaging in either “This person doesn’t really type” discussions, or “Wow these are the real autistics and all those speaking kinds are just pretending or not as knowledgeable about autism” discussions. I hear enough of both of those the rest of the time. I get enough questions about whether I actually exist or not that I don’t want to do that to anyone else. And having read the writing of a lot of autistic people who’re regarded as all over the “spectrum”, I’ve seen what I regard as both clueful and clueless stuff both coming from all over people’s perceived positions on said landscape. So no need to say that I’m going to disregard all people who communicate in X, Y, or Z fashion.