Category Archives: Shutdown

Autistic catatonia + adrenal insufficiency and/or myasthenia gravis.

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So as far as I know I’ve been/had:

  • Autistic since birth, probably since before birth, knowing the current science and the repetitive movements my mom felt inside her. But definitely atypical stuff from day one, which are all small things high when added up in retrospect amount to autism. Diagnosed age 14, again ages 18-19.
  • Autistic catatonia starting around age 12, diagnosed when the first major paper on it came out while I was 19. (Diagnosed by the same shrink who’d known me since I was 14.)
  • Neuromuscular junction disorder, probably myasthenia gravis or hereditary myasthenia, since I was 18 or 19. Diagnosed, provisionally, age 33 using a single fiber EMG.
  • Adrenal insufficiency, probably starting around the age of 27, Diagnosed at age 33 by which point it had become so severe they couldn’t find cortisol or ACTH in my blod. They assume it was there or I’d be dead, but they also assume I wouldn’t have survived much longer.,

So I had this big health crash when I was 27. One of the few measurable things we knew at the time was that my galvanic skin response, a measure of physical and emotional stress, went from very high to almost nonexistent. But we didn’t get around to figuring out it was adrenal insufficiency until much later, after way too many close calls in the hospital where I’d be seen for other conditions but be much sicker than I ought to be for these conditions.

I want to be clear I am talking about adrenal insufficiency. Not adrenal fatigue. Adrenal fatigue is a catch all term used by quacks for anyone experiencing fatigue, and requires no actual testing to confirm it, or bogus testing. It is dangerous because it prevents people from getting treatment for what they really have (which may even be genuine adrenal insufficiency) and can result in people getting strong steroids that are dangerous to the human body, who don’t need them p. vAdrenal insufficiency is where your body is not making enough cortisol and you can die from it. It’s usually easy to measure. I was diagnosed by a blood cortisol test, a blood ACTH test, another blood cortisol test for a baseline, and an ACTH stimulation test. That’s how real adrenal insufficiency is generally diagnosed.

Anyway my point is; some of my autistic catatonia traits have gotten better ever since the exact time of the health crash. In particular, I freeze for less often and for shorter durations. And I don’t anymore run around the house bouncing off the walls without any ability to control my movements. These things can happen they are just much rarer. I also have fewer full-body stims and rocking, and more hand-based stims. I still have trouble initiating movements, combining movements, crossing boundary lines, and doing things without being promoted verbally or physically. But I think I’m a little better at those things too.

This makes me wonder if there’s something about stress or cortisol (or ACTH) that plays a role in autistic catatonia. But I don’t really know who to ask. Lorna Wing is dead. I don’t trust Dirk Dhossche. I guess maybe Martha Leary and David Hill could shed some light on it, but I’ve lost their email addresses. There’s not a lot of researchers looking into autistic catatonia these days, even if there’s more than when I first showed signs.

Also, if you’re autistic and you have both autistic catatonia and adrenal insufficiency, I’d be interested to compare notes. But I don’t know anyone with both, so I’m not holding out a lot of hope there. I’m mentioning myasthenia gravis too just because the symptoms overlap with adrenal insufficiency to the point we were surprised to find I probably have both, not just one or the other. So it could be either one interacting with the autistic catatonia.

Also please don’t give me crap for using medical terminology here. It’s the only terminology I have and without it I couldn’t communicate.

 

“We won’t help you until you stop acting like you’re in pain.”

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Last night I engaged in a very interesting conversation with a guy who works at the service that helps me out at night.

I was in a lot of pain. By a lot of pain, I mean I was crying and periodically screaming. I don’t cry from pain usually. I didn’t cry when my gallbladder was well into emergency stage, I just went really quiet. If I’m crying from pain, it’s serious. And this pain (and related movement restrictions) was serious enough that a spinal tap was done when I finally did get to the emergency room, because it sounded to them a lot like meningitis. (Fortunately it wasn’t.)

Anyway, I was sitting there trying to string sentences together, while barely able to keep auditory comprehension going, and trying to push through all the pain-induced shutdown to actually talk to the guy. And I’d periodically get the wording wrong or scream in half-pain half-linguistic-frustration or accidentally interrupt him. He told me that he would not help me until I was able to “respect” him the way he “respected” me.

You know… usually, if, for instance, someone’s finger’s cut off, and they’re running around cussing and screaming and not being very polite, other people kind of grasp why they’re acting like that and don’t act like the person is being disrespectful on purpose. Somehow, if the person has some kind of disability label however, this becomes a “behavior problem”. I used to know a guy who went untreated for pain for years, with a dislocated hip, because he had a developmental disability and all the things he did because of the pain were considered “bad behavior”. They didn’t bother looking to see if he was in pain. Hint: Physical pain isn’t behavioral, and treating it as behavioral is a violation of our rights.

(And if I’m not tending to my blog enough, now you know part of the reason. Sorry about that.)

The funny thing about communication.

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Joel wrote about how people think about him when he’s using a communication device versus when he’s speaking, in You Must Not Want Company. One remark made was that when someone’s using a communication device, they obviously want to communicate or they wouldn’t be using it. I wanted to write a bit about when I’m communicating but not speaking or using a communication device.

I’ve had a few different friends remark that they were sort of amused by something about me. That was, that they could go for half an hour to an hour of having a conversation or other interaction with me, before noticing that I wasn’t actually talking or typing at all.

One of them was a friend where whenever she visited me (we lived near each other for awhile, now we’ve both moved away) we’d just sit there for awhile without talking to each other, but certainly greeting and interacting with each other. Another is a friend I now live near, who commented recently to someone else that she’s often shocked when she notices that she’s been carrying on a long conversation with someone who isn’t saying anything back, and that it feels totally natural.

It feels totally natural to me when it happens, too. It’s less tiring than coming up with words is, that’s for certain, or than listening to words. It doesn’t cause that awful feeling of exhaustion, pain, and pressure that entirely word-based interactions eventually and inevitably cause. It allows me to actually participate in non-verbal communication rather than being blocked out of it by language (and yes, one tends to block out the other, either way). And the interaction feels a lot more meaningful to me.

Another situation is when I truly can’t move, or can’t respond in other ways (even if able to move). I am automatically fearful when that happens, because some of the worst interactions in my life have been when this has happened, whether this be the kid in college who used to hurt me to try to snap me out of it, or the psych ward staff who used it as a bizarre excuse to tie me down and scream at me (question: When someone is so stiff that you can pick them up by their hands and the rest of their body stays rigid in a sitting position, why do they need to be any further immobilized than they already are?).

I have had two surprisingly good experiences with this recently. One of them was at AutCom last year, when I was exhausted after giving my talk, heading into another bad migraine, leaning against a wall, and not frozen but not able to respond or even focus my eyes properly. The staff person of one of the other attendees came up to me and talked to me, and I realized it was one of the first times that a stranger had talked naturally to me when I was like that, as if they were fully aware I could understand them. That meant a lot to me. Another was after those darned fireworks, when my friend explained to my other friend that freezing like that did not mean that I was unaware of things, but rather than I was likely more aware of things than usual. That’s something a lot of people never understand.

Joel is another person I’ve had a lot of fun with without necessarily talking all the time. Although the two of us can type up a storm together too. (When we first met, we put a laptop on a table, hooked an extra monitor and keyboard to it, and typed back and forth on it for hours.)

I wonder what it is that makes the difference between the people who experience enough communication from me that they forget that I’m not typing or speaking, and the people who forget that I’m there at all because I’m not typing or speaking.

Whoever invented fireworks…

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…ought to have them strapped to their ears, or something.

I can’t stand Independence Day. Thanks to a loud fireworks show, I spent a good deal of last night first involuntarily twitching every time a loud firework went off, and then later frozen in place for a really long time. The guy I was with said that fireworks were a good autie test: The two of us were the only ones visibly startling, in a large crowd of people who had gathered outside my apartment building to watch the fireworks. I can’t understand, either, why we commemorate a war with a display that has to be absolute hell for veterans. But anyway. At least this time I wasn’t curled up under a desk like I was last year, although that’d have been preferable maybe.

Something I noticed like always, but this time decided I was going to actually mention rather than relegating it to “things I can’t possibly find proper words for”, was that as soon as my body began un-freezing, my mind started freezing. When I freeze, it generally follows a certain progression, where first I can’t move at all, then I can only move in certain locations or directions and not in others (usually roughly the same sequence), and then I can possibly end up re-freezing in different positions, and so forth. I found that I could understand everything fine, and think and plan just fine, as long as I wasn’t moving. But the moment I did move more fluently, then my mind went rigid in the same ways my body had, and then I could only move along some pathways but not others, and there were giant gaps in what I could understand compared to usual. Which still makes me think there must be some kind of tradeoff going on when that happens, either comprehension works or moving works but not both.

By the way, if anyone ever happens to be present when that happens, be aware that the biggest concern is making sure that I’m changing position often enough to avoid injury. It takes awhile to get a pressure sore, but long before one happens, the pain is pretty excruciating. And not being able to move doesn’t mean not being able to feel pain. (It also doesn’t mean not being able to hear you or see you, so waving hands in my face or shouting louder at me is really annoying and unproductive. Nor, unfortunately, does it mean being unable to feel itches. And I could tell all kinds of stories of the sorts of things people have said and done under the assumption that the moment I stopped moving I stopped comprehending. In fact, the opposite is usually true, and if you don’t want to be written about in great detail later, don’t mess with me verbally or physically when you think I can’t understand you. That includes any of you who stand by and watch while people do these things, too.) The seat of my wheelchair is designed to handle a totally immobile person without causing pressure sores, pretty much any other seat is not. Another of the main concerns is to make sure that I’m not in a position that would impair breathing (anything that bends me in a way where I can’t get a full breath of air).

I also realized that it’s been so long since I’ve had a normal (for me) activity level that I had completely forgotten what can happen when I do. I’m finally getting over the asthma crisis — I hope. And the fireworks were undoubtedly only the last straw. Since realizing I could exercise again without breathing problems, I had a few days ago run all over downtown (including uphill) with someone without being pushed at all, and then yesterday, started an exercise routine, gone to the park with my dog, and watched the fireworks show. I’d completely forgotten there were non-breathing-imposed limits on this sort of thing, and that I might want to take things slightly slower. Then I suddenly noticed I couldn’t move. :-P

Self-consciousness, and meaningfulness, and meaninglessness.

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I talked once before about how self-conscious I get, before and after I give talks. I don’t give a lot of talks, but when I do, I’m well aware of people’s responses to the way I look. When I gave my talk on the panel at AutCom last year, for instance, it was near the end of the conference, I had a bad headache, and I couldn’t stop running everywhere and bashing into walls and then lying on the floor and such. I kept thinking, simultaneously, “Do people realize this isn’t voluntary, and that if I tried to stop something worse would happen?” and “Will people think I didn’t actually write this?”

Cheryl Marie Wade writes, regarding her participation in disability theater:

Going from being a person who used to hide her hands with a shawl, which I did, truly in life, for years–would always carry a shawl or a big purse that I could slide my hands under so that people wouldn’t be uncomfortable and I would not feel humiliated by people staring at my hands instead of making eye contact with me, and just the self-consciousness I had about it–to being someone whose anthem was, “Mine are the hands of your bad dreams, booga, booga,” and using my hands as, sort of, the red badge of courage kind of stuff–of just being so sassy, and so out there, and so in your face that you can’t deny me. […] The more I played the “woman with juice” who was okay about her body, the more I truly became her in life. No matter how political I was, I wasn’t okay about my body.

I’ve spent a lot of my life being told by various authority figures not to do the things I do in my videos. For a time I was able to confine at least some of them to behind closed doors — in school bathrooms, for example, which I spent more time in than most kids — but then with the various demands and changes of puberty I was not. People already thought I was weird, but by then they thought I was even weirder, and I heard that these things were some combination of “retarded,” “psychotic,” “attention-seeking,” and “on drugs” (that last assumption being one that led to my brief period of actual drug use), and at any rate definitely ugly and shameful and pointless. Not to mention the endless litany of “Can’t you see people are staring?” (actually, I can’t), and the physical abuse that has ensued over this stuff.

Even the times when I was fairly still weren’t much help. I still remember being on a field trip and sitting on a set of bleachers staring into a light and not moving. Pretty soon everyone was around me waving their hands in my face and noticing that my pupils weren’t reacting to the light and so on and so forth. When I could move again, I could only move very slowly for awhile. (I was not taught about shutdown, nor the effects of unfamiliar locations on autistic people. I had no idea why this was happening.) When I’m still, I’m apparently too still.

But at any rate, while I apparently appeared not to care what people thought of me (and got a lot of compliments for “not caring what people think,” which seemed to hinge on the idea that if I didn’t want to look like this, surely I wouldn’t), I was actually getting more and more self-conscious about my appearance the more people said things (positive or negative) about it. And that’s never entirely gone away. I’m pretty introverted, and don’t generally like standing out, whether in a good or bad sense. (Which is one reason I liked AutCom. I didn’t stand out there whatsoever, I was neither the most normal-looking nor the most unusual-looking person there.)

Some of what has been considered attention-seeking behavior has been more like attention-avoiding behavior. Many of the times I have tried to disappear, I’ve inadvertently done something bizarre-looking to most people. I can remember hiding in closets and being accused of trying to make people find me, and running away from people only to be accused of trying to make people chase after me. And sometimes I, like the monster in Douglas Adams books, convinced myself that if I could absorb myself in something and forget everyone else, they wouldn’t see me. That didn’t work well either. At any rate, I often find attention, whether positive or negative, complimentary or neutral or attacking, aversive in large quantities. (I don’t mind some attention from friends, but the way I seek their attention is to write to them or something.)

So because of all this, I kind of freaked out this morning when I saw that the “In My Language” video I’d made had reached 24,000 views. This is sort of like how I feel after speeches, except it’s going on all the time.

I know this is a very silly reaction in someone who actually made and put the video out there to begin with. But I like the communication part of it. I like having a message and finding an artistic way to put it together. I like the effect that message has on people. I’m just not so sure I like the little part of that that involves people seeing how I look.

The problem is I generally think, “Okay, I have a message, I have a way to put it together, it’s probably a useful message for at least some people to hear, and advocacy is what I do. So if I’m scared to put it out there, tough. It’d be selfish to come up with a useful advocacy message and then not use it because I’m afraid of something totally inconsequential.” Some people enjoy being looked at so much that they get in danger of letting it cloud their message. I think I’m the opposite. I fear being looked at so much that it could cloud my message if I let it. So I’m very stern with myself about that, and I’m sure most of the time I look like I don’t care.

But I do care, I just try to avoid the self-indulgence of letting that run my life.

Sometimes I think though that even the people who like what I write, make too much of my appearance, as if it in itself is a communication of something other than what it is. I look like I look because this is how I look. Yes, my responses to my environment are a lot more meaningful than people give me credit for. But at the same time, this is just what I look like. This is what I have to look like. I don’t get a choice, unless I were to go back onto the brain-destroying neuroleptic drugs that did admittedly make me move around less (but did nothing to stop the reasons I needed to move around, and which may have contributed to some of the level of unusualness of my appearance).

The way I look is not a statement of severity of anything in particular, and it’s not a claim to any other traits besides my appearance. It’s not amazing that I look like this and also write. I know people who look like this and also speak. I have known many people who look far more standard than I do, until you try to talk to them, at which point they have no spoken or typed communication. I have known many people who look far more non-standard than I do, and hold down jobs, have families, take care of themselves reasonably well, speak fluently all or nearly all the time, etc. There’s a myth that you can tell a lot about an autistic person by looking at them. I’ve been trying to break down that myth by juxtaposing my appearance with my writing, but a lot of the time people still think I’m amazing or unique in this regard. I’m not. Or else they think my appearance itself is a deliberate statement about my other abilities. It’s not.

I look like this as far as I can tell because this is how I respond to my environment at this point in time, and because I have no cognitive energy to spare shutting those responses off (there are people who look exactly like me in private but can hide some or all of it in public, at tremendous cognitive and emotional costs that take a long-term toll on their energy levels — all that happened to me was I burned out far earlier than the people I know who are facing the exact same burnout in their thirties and forties). Not that I necessarily would if I could, but it’s a moot point because even when I pour all my energy into looking normal (as I was at one point explicitly trained in doing) I still don’t.

Similarly, the reason I type rather than speak to communicate is practical: If I type, I type more or less what I want to say. If I speak, if anything comes out at all, it’s random things that are anyone’s guess as to whether I mean them, and it makes me overloaded, and tired, and in pain, really fast. It likewise is not a statement on my other abilities or lack thereof. (I know people who can speak perfectly well — at least superficially — who have roughly the same abilities as me in other areas or find a lot of things more difficult than I do, people who cannot speak or type who are way better than me at some things… etc etc etc.)

One autistic person (babalon_it) writes in response to this video:

Wow. That was awesome. I kept feeling myself getting drawn into rocking and singing along with and feeling things and wanting to be there again. I was there when I was a kid. Before they took my soul and told me I couldn’t be that. Before I was taught it was defective to be that. To be me.

Yeah. Exactly. I was taught that all this — the way I perceive things, the way I react to things, the way my body moves in response to things — was inappropriate and somewhat disgusting. And I do note some combination of revulsion and pathologization in some (so far all non-autistic) people’s responses. (And the revulsion and pathologization go hand in hand.)

Someone said that instead of seeing any communication going on, all they saw was a dysfunctional sensory system. They were too repulsed, apparently, to watch more than a minute of the video before coming to that conclusion. Another person described my actions as obsessive-compulsive rather than meaningful. Despite my clear explanations of my own interpretations of my actions. (Which are not entirely deliberate, but which do seem to be a constant back-and-forth response to things around me. Get me around even more unfamiliar stuff and I’ll either do it more or stop moving altogether — or both in rapid succession.)

That’s the opposite of what I talked about before. Some people are willing to add in all kinds of meaning that isn’t there — that by appearing on a video looking the way I look, I am saying something about my other skills, which should all be in line with their stereotypes, and furthermore which should always have been in line with their stereotypes, etc. Some people are willing to take away all the meaning that is there, by claiming that what I am doing serves no purpose, is not communication, etc, and that it is purely a pathological process and they as outsiders know this better than I do. Some people do both at once. I guess I prefer when people do none of the above.

I do want people to rethink what they see when they look at people who look like me, or unusual in some other way, though. Not in order to make them suddenly think everyone who looks like me is like me — that’s not true. But in order to make them think there’s more to people than the emptiness I’ve seen attributed to many.

That said, behind the message I’m, as a person, just as self-conscious as I ever was. I’d think I’d have gotten over that by now. By the way, it’s a myth that autistic people can’t ever experience this. Some do, some don’t, from what I’ve seen. The reason isn’t of course because there’s anything inherently shameful or defective about being disabled/autistic/etc, but because we’re taught by most people around us that there is. Laura Minges wrote a wonderful monologue called Disability Shame Speaks (click through it, there’s several pages), that probably explains a whole lot of my current reactions to all this.

Additionally: There’s a person who wants to know if I am really typing this stuff. Anyone who wants to know that (and who isn’t one of the very few people I’ve already expressed a wish never to be in direct or indirect contact with) is welcome to look at the page I have on official documentation. Look at the last document. It tells you where I receive services. You are welcome to set up a way to meet me at that place, with either my staff or my case manager, at some point. At which I will make it as obvious that I am the one writing what I write as I have to. (An easier task for me than for people who use FC all the time. I only rarely need it, and therefore can make it obvious through what is usually fast ten-fingered typing that I am writing what I write. I know plenty of people who use FC, though, who are just as much for real as I am, and don’t want you to go away thinking they aren’t real but I am or something, although I have little control over that I know.) Same goes for people who want to know if I really exist or not. That’s a standing offer. If you want to email me, look at the web address for this site, and insert an @ instead of a . before autistics.org.

Chasing Oblivion

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A conversation last night reminded me to write about this. (Note: Now that I’m coming back to this, I have no idea when I started writing this, but it sure wasn’t last night.)

When I was a kid, I really didn’t want to exist. At least, that’s how I conceived of it at the time. I was not suicidal. I did not want to die. I just didn’t want to be there. The manner in which I started head-banging was not as the impulsive action it evolved into (and it did evolve into that), but I had heard a person could be knocked unconscious if the right part of the head was hit, so I set about trying to hit it over and over. Unconsciousness sounded like non-existence, and non-existence sounded pleasant.

It sounded pleasant because I was on a kind of overdrive that I have heard autistic adults talk about still being in. Some of them have sustained it their whole lives. I only sustained it about ten years, if that (maybe more like six or seven).

That would be ten years of doing incomprehensible things, for reasons I could not understand, with a vague fear that something awful would happen if I stopped, and being continually bombarded with more information than I could understand or handle. This is not to say there were not good things going on in this time period, but outside of specific incidents, I mostly remember a blur of shapes and sounds and words and pain. (Severe physical pain, which went untreated for more like 20 years.)

What I was thinking throughout all this, was about getting back to the nothingness that my mind could sometimes get into. I pressed myself onto the floor hoping that I would become the cool smooth surface of the floor instead of the jagged burning surface of my body. In school I ran out of the classroom and ran the paper towel dispenser in the bathroom all the way out of paper towels, ran the soap dispenser out of soap, and pressed my face on anything flat and cold I could find. When not doing other things, at home I tried to disappear in my room by inventing all kinds of scenarios where everything around me slowly faded out of existence, trying to call up the nothingness. Or else banging my head with things, trying to call it up another way.

Some people have tried to characterize some of what I was doing outwardly in this time period as pretending to be normal. That’s not actually a possibility. Doing that would have required a level of understanding that I didn’t have at the time. A better characterization would be, I was doing what I thought I had to do, with not enough capacity left over to reflect on why I had to or what it was I was doing.

To me, the world — in general — usually felt like one giant thing attacking me from all sides. I don’t mean in a paranoid sense like “people were out to get me” (although kids certainly weren’t very nice to me and teachers certainly nearly always took their side), but on more the level of total bombardment with something giant, chaotic, incomprehensible, and pain-inducing.

As I got older, I was put in situations where I had less and less time to do all these things, and so I started doing more of them in the open than I’d previously done. I lost most capacity for the appearance of standard learning, which people didn’t notice for somewhere between one and three years (I noticed right away). And all the other changes I’ve discussed during that time period were happening, so I was pretty disoriented.

I tried taking refuge in nonsense, since the world seemed like nonsense to me anyway. I also started preferring sleeping to being awake, and trying to treat being awake as if I was still dreaming. In my dreams I often fell into nothingness, which felt wonderful, so I kept trying for it while I was awake. I even tried running into a window (ground-level, it didn’t break) because in a dream I had run through a window and been absorbed into the cold glassiness and disappeared. And then when I got old enough to understand what suicide was I tried that (but was thankfully horrible at it).

A lot of people would attribute all this to how horrible autism is or something, but I don’t think it’s that. I think it’s the result of trying to function beyond your capacity day in and day out with no understanding of why and how to stop. These days, if I start getting an intense longing for oblivion, I understand that I am on the verge of shutdown, and need to lie down or at least do something less overloading. While I am still considered by at least one friend a “workaholic,” I actually push myself far less than I did when I was a kid, because I know what the results are — I don’t get any further that way, but I get a lot more burned out.

There’s a real problem, though, with the way things are set up (and I don’t mean the brain), when a little kid’s fondest dream is to not exist. I really worry about all the kids who are put through rigorous programs that make them do more and more, and the more they can do the more work is piled on them, to the point where their systems can’t take it. And the adults forced into that position from lack of readily-available assistance. I wonder how many of them just wish they could disappear, like I used to wish.

Why we don’t do what we don’t do.

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This is another post from my archives, most of which I wrote in July:

I’ve been thinking about assorted reasons that autistic people don’t do what we don’t do. And how often even auties seem to confuse those reasons with each other.

There are people who do not know how or why to do something, but are able to do that thing once they understand it. An example is an autistic person who never speaks because he did not know it was required of him, but suddenly starts speaking when he sees the point of it.

There are people who do not know how or why to do something, but would not be able to do that thing once they understood it. An example is an autistic person who never spoke before because she did not know it was required of her, and now knows it’s required of her but can’t manage to do it for any of a number of reasons.

There are people who know how or why to do something, but still can’t do it. An example is an autistic person who’s always seen other people speak and tried but can’t.

There are people who are perfectly capable of doing something, but are afraid to or don’t want to for any of a number of reasons. An example is an autistic person who knows how and why to speak and could do so if they were not self-conscious, or afraid of being punished, or afraid that if they showed they could do it once they’d have to do it all the time.

There are people who are only sometimes capable of doing something. An example is an autistic person who can only speak some of the time, and may even only be able to understand why to speak some of the time.

These are, of course, not necessarily separate people. Many people are a little of most of them, even in the same area.

What I notice though is that most of what people write with regard to helping autistic people do stuff, has to do with people who would be able to do something if they knew how. Even stuff by autistic people often has the implicit idea that things are just a matter of knowing in your head how or why to do something. Then a minority of what’s written has to do with lacking confidence, being afraid, or being lazy.

I have a ton of stored knowledge. I can’t just call that stored knowledge up at random and get it to work for me. Even if I do manage to get that knowledge triggered, my brain may not be up to doing whatever it’s trying to do. There’s no consistency to this.

There’s no wonderful training technique that will miraculously make me able to do various things on a consistent basis. There’s no piece of information that, if I had it, would make my surroundings and body always resolve into something comprehensible in the exact right way to be able to do a number of things. Overload, shutdown, and differences in perception do not miraculously vanish the moment knowledge, motivation, and calm appear.

Right now (as I am editing this post, in the present, not the part that I wrote in the past) I can’t sit up and read or write at the same time, so I’m flat on my back. I can’t usually ever stand and read at the same time. All the “knowing how to read and write” in the world doesn’t change that. I am not afraid to read, lacking confidence in my ability to read, or too lazy to read.

(I have spoken once with someone who uses a definition of “anxiety” so broad that it extends to the concept of having trouble multitasking, or in fact having trouble doing anything. Personally I think when you expand a word so broadly, it becomes useless, confusing, meaningless, and incomprensible to your listeners, and gives false impressions.)

At any rate, there’s a number of reasons that autistic people (and other people for that matter) don’t do what we don’t do. Not all of them are about lacking knowledge, being afraid, not feeling like it, or being lazy.

“It’s on purpose. Really.”

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I came up with this post yesterday, but was not feeling great so I couldn’t do the new-word-generation required to turn it into a blog post.

I’m working on a video that deals in part with what disabled children often think about what’s in their futures. While I’m not likely to include much of what I’m about to write in this video — it’s a bit tangential — some of the stuff I was coming up with for the video reminded me of it.

In The Me in the Mirror, Connie Panzarino talks about growing up with spinal muscular atrophy. She was told things in physical therapy like “You can move your legs, you just won’t.” She has a long memory — back into babyhood — and describes her life starting at a very young age. And, among other things, she became convinced that she could walk and just didn’t want to enough. She thought of herself as different from other physically disabled children she knew, because she believed that she, unlike them, had this secret that she really could walk and one day would once she decided to.

It’s important to note, about her and about what I’m about to describe about myself, that in a less ableist society, disabled people would not be likely to end up thinking this way, any more than most people (other than kids who’ve watched too much Superman, and adults who’ve read too much New Age garbage) think they could fly if they really tried. It’s not “only natural” to believe these things, it’s a product of growing up in a society that really doesn’t take people like you into account, in a big way. What I am about to describe is not pretty, is not desirable, and was not fair to the disabled people around me. But I was a kid, kids think things like that in societies like this one. I’m writing this — and a lot of other things — because no kid should have to grow up thinking what I did.

Anyway, I can remember the time period when my abilities started shifting around. When I say shifted around, I mean like someone came into my head and rearranged everything while I was asleep. I can’t remember if it was gradual or sudden. I don’t know how much of it was truly the loss of certain abilities, and how much was the loss of appearance of certain abilities that had been only tenuous and illusory to begin with. I do know I gained other abilities during that time period, that I’d never shown any remote talent in before. I also know I gained awareness of certain things I did, and could not do, at that time, awareness that I did not have before. And I know that some things really did vanish. Basically there was a giant shuffle taking place in my head, beyond the usual shuffling of puberty.

At some point, I convinced myself that unlike other people, who could not help being like me, I was different. I was better. (Told you this wasn’t very nice or fair to others.) I was only being like me because I was choosing to be an individual. Others like me were only being like me because they couldn’t help it. I tried to distance myself as far as possible, including from people who were in reality far more capable than I was at a lot of things. I, unlike them, could cease to do certain things, or start doing others, any time I wanted. I just… never seemed to “want” to.

This was backed up by, among other things, shutdown. I would experience a longing for shutdown when I was overloaded, and there it would come. This must mean that I controlled it and could will myself not to. Even though I couldn’t. It did not cross my mind that having an extreme longing for shutdown is kind of like an extreme longing for sleep: It’s a biological need expressing itself as a “want”, and if you manage to put it off for any length of time, biology will take over.

While this gave me a false sense of control, it also meant that I felt guilty a lot, and as if I was a horribly selfish person (in ways other than I was actually being selfish — such as by adopting this belief system, which is truly very self-absorbed). Who but a horribly selfish person would choose to flop on their back and wave their hands and objects in front of their face while other people around them “needed” them to be doing something different? Who but a horribly selfish person would delay an entire group of people by freezing in place while overloaded, and force everyone around them to try to figure out what was wrong? Who but a horribly selfish person would lose control of their body in all the myriad ways that I did all day every day, forcing other people to deal with the consequences?

Because I did. There were a number of things that were simply too painful to think about before I realized I didn’t actually cause them.

The time that being fed a combination of chocolate and espresso beans meant that I ran around wildly and then shut down in both movement and comprehension so far that I was sent to a neurologist in the aftermath.

The amount of time I spent staring at nothing, doing nothing.

The fact that school and language were both incomprehensible far more often than not.

The fact that I acted like, and felt like, I did not understand things, only to understand them far later (“must have understood all along”).

The fact that I spent most of my time either doing repetitive movements, not moving at all, absorbed in the sensory experience of various objects, or thinking about one topic and only one topic.

The fact that I spent a lot of the time not thinking in the usual sense of the word. (These days, I’d consider it thinking, but it’s not what people are taught thinking is.)

The fact that I couldn’t get my mouth to say much, if anything, that was in my head, and often couldn’t even get the thing to move at all.

The fact that I spent much of the time babbling nonsense unrelated to my thoughts when I could get anything out.

The fact that there was only a tiny amount of stimulation I could tolerate before everything went haywire.

The fact that I was in excruciating physical pain all the time and frequently reacted to it.

The fact that I did things like flop on the floor, run away screaming, make certain kinds of motions, and hide inside and under things, spin around in circles a lot, that nobody around me was doing.

All of these things and more troubled me greatly, not least because I thought I must be doing all of them on purpose, behind my own back, subconsciously, or something.

This, by the way, is why it’s a really good idea to discuss, and discuss often and accurately, being autistic, with your kids, even if you think they are too young to understand. They will come up with far worse explanations than anything you could possibly say to them.

Anyway, I believed that I could stop these things any time I wanted to. I believed this all the way into institutions (at least part of the time), despite the evidence that I could not. I decided that I must really want to be in them if I acted in the ways that got me put in them. I decided I was the most twisted, selfish, and bizarre person on the planet. Nobody knew this about me, I came up with it on my own, although plenty of people reinforced it along the way without knowing it. It was my worst secret and I dreaded the day that I would be capable of telling it and put on the spot. Everyone around me who acted just like me couldn’t help it, but, I was convinced, I could, and that made me both better and worse than them.

It became worse after a doctor harnessed my echolalia and echopraxia to get me to act certain ways that were actually out of conjunction with who I was. I said before that I don’t feel trapped in my body, meaning I don’t feel trapped simply by appearing disabled. By the time that guy got through with me, I definitely felt trapped, because what he had me doing was so far out of sync with anything I was thinking or experiencing, further than anything every had been. When, even in the face of all this, I acted from things like overload and incomprehension that were not going away, when I slammed my fists into my head over and over, when I didn’t understand what was going on, when I still couldn’t communicate, and yet this guy was considering me “much improved”, my mind twisted into more knots than it ever had been.

Nobody should have to believe that they are, consciously or subconsciously, causing themselves to be autistic. I happened to fall into the clutches of a psychotherapist who was a holdover from the old psychodynamic-approach days. This. Did. Not. Help. To put it mildly.

But this kind of bizarre rationalization can only happen in a world where it is made bad to be autistic. It’s not that the truth I wasn’t facing was such an awful truth, it was that this truth was made awful by the way autistic people are viewed and treated. By the fact that I was not being offered any true guidance or assistance that would have helped me. By the fact that there was no roadmap and the only roadmaps I had, told me I would be institutionalized the rest of my life and that this was the only fate possible for people like me (unless we could be miraculously cured).

There is no reason that people should have to believe things like this about themselves (both that some aspect of themselves is horrible, and that they themselves are the ones causing it). But it is disturbingly common that people do.

Fear of disability is not what it seems.

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Two nights ago I had a long conversation with a friend.

She was in bed because she’s got a pressure sore forming on her butt. I was lying on a mat on the floor because I couldn’t hold my body upright and think at the same time.

We were talking about the stuff that normally gets called disability, or impairment, or whatever the current term is. The differences in our bodies, that are medicalized, and defined as horrible fates worse than death and so forth.

We were talking about our total lack of fear in the idea of acquiring any particular currently-pathologized condition.

She talked about how “chronic, intractable pain” is an everyday reality for her, and it’s only going to get worse with time. I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity. I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.

I started laughing, because that seems like an absurd idea to me. My friend said, sarcastically, “Oh, but you’re laughing. If you’re laughing, you can’t be in any pain.”

Then we got into migraines. I’ve had one for a few years straight now. My friend said, “It’s documented that people sometimes kill themselves over migraines, so that’s got to be considered one of the nastier forms of pain.”

My friend recently had a knee injury and was unable to get out of her wheelchair at all (normally she can stand for brief periods) without extensive assistance. She talked about how that isn’t a particularly awful thing in and of itself. She also once went through extreme spinal surgery and only got a day’s worth of pain drugs afterwards.

I freeze in place on a regular basis, sometimes to the point where even my eyes are not under my control, right down to pupils staying at a fixed, large size and my eyes not moving at all. I know very well what it’s like to have zero voluntary movement, and total awareness of surroundings, and I’m not afraid of it.

I also know what it’s like to not comprehend anything going on around me, to be unable to form what most people consider thought (although I think their definition is far, far too narrow to encompass all thought), to “lose” extended amounts of time because things were not encoding into memory, to understand things only on a perceptual level with no abstraction or what non-autistic people would call “comprehension” or “cogitation”, to understand things only in the moment and not have a continuous memory going on, to understand bits and pieces of things on bits and pieces of different levels, and so forth. I know what it’s like not to even be able to put together the intent to “understand” things in a relatively typical way, because the knowledge of that intent simply isn’t there, all that “makes sense” is sensation.

I even know what it’s like to have seizures every few seconds. And from the effects of various supposedly “anti”-psychotic drugs, I know what it’s like to hallucinate and lose touch with reality. I know what it’s like to vomit several times a day, or continuously for several hours in a day. I know pain so intense that I can’t move, and can’t think of anything other than pain.

These are things I know. I know them short-term, I know them long-term. I know them as states that I am able to partially exit for certain periods of time, and I know them as states that I am mandated by my body to stay in until they’re over, if ever. I know the extreme fluctuations in all of these areas that I go through daily, and the gradual moving from one area to another that takes place over time. These things are or have been significant parts of my life. My friend and I talked about all these things from my life, and all these things from her life. Between the two of us, we have internal-body experiences that cover a pretty wide range physically and cognitively. Neither of us are afraid of physical or cognitive disability, of pain, of confusion, of immobility, or of illness. We’re not particularly afraid of even the things considered the most devastating.

There are things we both fear, though. And they have nothing to do with the internal experience of any of these things.

I fear being put in an institution, of any kind, whether a large institution, a group home, a nursing home, or a psychiatric ward. I fear boredom because people might assume I’m not there and park me next to a blank wall for years. I fear people not bothering to prevent or treat things like infections and pressure sores. I fear people who claim to love me deciding to kill me to spare me the unendurable suffering they imagine I am experiencing. I fear bad staff. I fear being assumed dead or unconscious when I freeze (this has happened). I fear not being given a workable communication system when one is available. I fear being treated as a non-person.

The trouble a lot of people seem to have, is they can’t distance these legitimate fears, from fears of the state of being itself. They act like the above are a natural consequence of being configured in a certain way, and that the best way to avoid that is to prevent at all costs that configuration, instead of preventing at all costs those things from being able to happen to people.

My friend and I are not afraid to acquire various conditions that are currently pathologized. We’re aware we’re likely to acquire at least some of them within our lifetimes, even if only in old age. We’re afraid of discrimination, including deadly forms of discrimination. The solution here is not to fix our fear or “acknowledge our feelings”, but to fix the problems that cause legitimate fear.

The trouble I have in talking about these things, is that for people who do not adequately separate out how a person is from how they are being treated, this sort of thing often results in responses like “Oh how horrible, I or my child or someone else is in all this danger, this is a horrible horrible fear, how can we fix me or my child or whoever until they won’t be in all this danger?” Wrong answer. Work to fix the danger, or you will have solved nothing at all except temporarily your own emotional state.

The trouble is, people make decisions, including policy decisions, based on these nebulous fears of being disabled, rather than the real and concrete situation that disabled people are treated like crap. People actually believe that their feelings on this are neutral in nature, and of course, since they are feelings, impossible for anyone to validly question. But these feelings come from somewhere, and without looking at disability as a political thing rather than an issue of personal individual suffering and uselessness and whatnot divorced from any context, we will continue to have awful things happening to us all the time, and people will continue to fear becoming like us.

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.

Efficiency and frugality

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In response to one of my earlier posts on interpretations of my eye gaze, Allison Cummins wrote:

As an NT, I use facial expression (as Amanda noted) and body posture when interpreting gaze.

In Western culture, we tend to prefer the vigourous, dynamic agent. Firm handshake, upright posture and all that.

In Nigeria (I lived there four years), where all that tension and vigour would be a waste of scarce calories and generate unwanted heat in a hot climate, people are much more relaxed. While most Canadian NTs would expect someone to stand up, look you in the eye and shake your hand firmly, a Nigerian is likely to remain seated with her head propped up on her arm, more or less looking toward you, as she proffers one limp hand to be shaken.

Many Canadians would interpret this not as frugality, but as laziness and inattention.

Amanda has a frugal-type body posture. She uses support (floor; elbows on knees) and has a facial presentation that could be unkindly described as “slack.” For me, this overall picture suggests someone who isn’t particularly present in her own body or for the other people with her, whether because she’s daydreaming or incapable of thought. Eye gaze is interpreted in this overall context.

Of course, knowing better, I can make a point of disregarding certain signals and focussing on other ones. But people have to know better to do that… otherwise they will defer to their unconscious readings.

This idea of frugal body postures reminded me of one of my own observations about the way I do things, formed when I was just starting to realize I had an outward appearance and that people were judging me based on it. I noticed that very little of me moves at any given time, in relation to the background. In fact, only the bare minimum amount of me moves voluntarily at any given time.

I say voluntarily because much of the time I have the standard autistic mannerisms as well as tics, both of which can look like a lot of movement. (As a very rude professional said the other day, in gesturing at me to make uninformed pronouncements about stuff I needed without acknowledging my presence, “See all that movement?”) But that’s background. In the background, there is either movement or stillness, but it’s still background, something my body is doing, probably for a good reason, but not something I’m voluntarily doing to achieve a tangible end.

When I say I use the minimum movement possible, I mean against that background. Whether I’m rocking or not, I still use the fewest body parts possible in order to type with my hands. I have noticed that non-autistic people (at least, in America) are in a constant state of what to me would be gross overuse of my body: Even when they are doing something with their hands alone, their faces and all possible body parts are involved in generating assorted signals or something. They seldom use the “resting” postures that my body assumes when that particular body part is not doing anything (the postures that apparently get interpreted as “blankness” or even signs of neurological injury).

But this exact kind of efficiency and frugality that I use, is one of those things that would fall under the heading of an autistic-style life skill. Many of my behavior programs, of course, were designed to try to get me to stop looking like this. That requires monitoring so many body parts that it’s really impossible, and even when I do achieve some semblance of it, the effect isn’t to make me look NT, it’s to make me look really weird with pasted-on expressions and such that are fairly incongruous and would probably scare the crap out of a lot of people who read standard body language.

me attempting to look NTish and only succeeding in a scary-looking facial expression

This is an example of me doing my best to do NT-style posing for a picture.

This obviously doesn’t work too well, and I know that once I get one thing (like the facial expression) then the rest of my body goes back to doing whatever it was doing. I can’t wrestle the whole body into submission at the same time, and even my face isn’t doing a natural smile at all. Even if I could look like that all the time (which I can’t), what’s the point? It’s wasteful, inefficient, and doesn’t even make me pass particularly well (the goal in the training that got me to do things like that was passing, it was never achieved). Compare it to the hand-flapping pictures on my other website, and ask yourself which one looks happier, and more natural for me. Hint: It’s not this attempt at a smily thing.

This efficiency, though, is exactly what is needed in order to control a body that must first be found, like any other sensory input, and then controlled, one piece at a time. Trying to train someone out of it is training someone out of… efficiency. That’s not a good thing to train someone out of, but it seems to be the focus of a lot of “social skills” sorts of things. A special ed teacher (for whom I have no respect) once told me that her goal was to make it so that when her class went out in public, they “didn’t look like a bunch of retarded kids being taken out in public”. So she as much as admitted she wasn’t teaching anything functional, only cosmetic. (And trust me, they all looked autistic, even when she was done with them.)

It’s not just movement, of course, that demands this sort of efficiency. It is also thinking, and perceiving the world. Wastefulness in these areas leads to overload, and overload leads to pain and shutdown. It is harder to describe the skills it takes to deal with thought and perception, because they are not as concrete and overtly visible as movement. But they are very similar things: Don’t waste what you’ve got.

All of these skills are pretty much the antithesis of how autistic people are taught to deal with the world.

For instance, many programs for autistic people rely on basically memorizing large amounts of symbolic information about the world. That is horribly inefficient. It requires perceiving what is in front of you, converting it into symbolic information, calling up the correct symbolic information on the basis of whatever it is that you’re doing, cross-referencing that with a whole bunch of other symbolic information, and then converting all those symbols into action or words. By the time you’ve done all that, the response may create as many problems as a non-response would, and you haven’t even had the chance to check in on intention. And you’ve used up a whole lot of mental energy on generating all those symbols (whether said symbols are words or something else).

Similar things happen when communicating with an autistic person. If you want me to do something, the most efficient thing to do is bring me the objects used in doing that thing. However, most people don’t do that. They announce things like “Would you like to do this?” which requires deciphering what they’re saying, remembering what they’re talking about, and responding in yet more words, and then in actions, which requires starting various body parts moving on my own with no appreciable cues to physical movement. Or they wave things back and forth in front of my face so fast that I can’t possibly see whatever it is they’re trying to show me, and the slower I am to respond, the faster they jiggle the object around. Then they’re surprised when I shut down and can’t do anything, or melt down and scream.

The combination of pressure to respond and total incomprehensibility is never good, and using various long and winding routes to get the information in is not good either. There’s a very particular side to side motion that people do, where the bottom part of something stays still and the top part is moved rapidly and rhythmically from side to side. It makes the object utterly incomprehensible to me yet conveys a desire that I respond to the object, and makes the object impossible to ignore. And people wonder when I start banging my head. Hand me breakfast and I’ll eat it, start talking about breakfast and waving oatmeal boxes around in the air and you’ll drive me up a wall trying to keep up with everything and generate the desired responses.

And yet things like that are considered among the “best” of what there is to teach autistic people. What autistic people actually need to learn, is ways of doing things that do not take up so much space cognitively. This, of course, is yet another thing with no fancy names, money to spend, promises of normalcy (in fact the person will almost undoubtedly look less standard), resemblance to anything medical, or appearance-saving shortcuts that are really the long way around. So it’s, yet again, unlikely to catch on in the “we’re doing something doing something doing something doing something” mentality that pervades the autism world. Much better, apparently, to bend autistic people in strange unsustainable directions or force us to take the long way to do things half as well as the short way, if at all.