The funny thing about communication.

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…

…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

Editing.

Mom26children has written a post about the assumptions people make about her family based on their television appearance. I can identify a lot with what she writes. When CNN came to my apartment, they took two days of footage for that one ten-minute segment. As Mom26children says:

Some of you guys question the severity of my children’s autism by what you saw on an hour show. With commercials, you had 45 minutes into my very “edited” life.

I’ve been asked privately to clarify a lot of things about the CNN show, but I haven’t had the time or ability to think back on it much without the chaos of the whole thing being rather overpowering. But I think I’m finally at a point where it’s distant enough I can say this stuff without my head getting tangled in a lot of overloading memories.

That’s one thing right there: The whole experience was me under overload. It does not show how animated I usually am, and even the parts of the show where I did show more animation didn’t make it into the final product. I am remembering in particular when Laura brought baklava over, and they were excited to get footage of me squealing and flapping and smiling. But that didn’t make it into the final video.

They didn’t show me running away from the camera for most of the first morning until I got used to them.

Some funny things didn’t make it into the video, too. I still want to know what CNN does with some of their funnier footage. At the dog park, they trained the camera on my dog. Right as my dog peed. And right as another dog came up behind her and drank the pee. Which had all of us cracking up, but we knew they wouldn’t use that. I guess it’s sitting in an office somewhere if they don’t throw it out. They ought to do outtakes of their news shows.

They showed us at the dog park, but they did not show me after I took my jacket off and had a wide patch of my back exposed, and my staff was chasing me around trying to pull my shirt down while I didn’t get what the big deal was. They also didn’t show Laura explaining to me later that not being able to feel the cold doesn’t mean I won’t get frostbite.

They did not show even a little bit of the interview with my case manager. They interviewed him about his experiences with me and with autistic people in general. He also showed them all the equipment in my apartment that assures that I can get support at night without needing a roommate. (I am thinking of making a short video on that because it’s a really important idea that not a lot of people have heard of.)

There was also a lot of time they spent interviewing me that they of course didn’t have time to show. When they did show it, they did not show the reporter that interviewed me, they just showed Dr. Gupta. The reporter and the cameraman and sound woman actually spent the most time with me, Dr. Gupta was only there for a couple hours to interview me on the second day.

They showed the dentist’s appointment, but not really anything that happened within it, maybe due to confidentiality or something. What happened was the dentist basically assured me there was nothing mechanically wrong with my jaw to cause any pain. (When I saw the jaw specialist a couple weeks later, he did imaging and found that in fact my jawbone is underdeveloped in general, and the rounded area that the jawbone is supposed to rest in, is supposed to be deep and round, but mine is shallow and flat, and that I clearly have mechanical trouble closing my mouth and keeping it closed, as well as dislocation and pain and all that fun stuff, for reasons related to that. The dentist I saw on the show is no longer my dentist for that and various similar reasons, as well as my learning through word of mouth that his practice has a bad track record with autistic patients.)

There was also a lot of misinterpretation.

I suppose it makes better drama to say that I banged my head because I was an intelligent woman who felt “trapped” somehow. But really it was just because I made a typo and I was already stressed out. It was the first time I had banged my head in months, but they played that clip over and over.

I actually told them in great detail why I used a wheelchair, which has to do with a combination of assorted physical problems and a parkinson-like movement disorder I have. I told them how I waited until I was otherwise basically stuck in my house before deciding to get one, and how much more exercise and exposure to the outside world I got now that I had the chair. I told them about previously going out in groups at agencies and holding up the group when I’d freeze, and how another client used to comment they needed to get a giant spatula to pick me up. And so forth. Then I later told them that when I was lying down on my friend’s couch it was easier for me to think to answer questions, and that I’d have preferred to do the interview lying down for that reason. Somehow my reason for lying down for the interview got translated into “why I use the wheelchair” and they broadcast that information instead of all the previous information I told them. They said that I used it to make it easier to think, and while it is easier to think while not concentrating on walking, it’s not my primary reason for using the chair.

I think they were among the many people who greatly simplified the history I actually gave them of my life. That makes sense given the amount of time they had. But I told them a lot of complex stuff about my speech history that got simplified into something much more abrupt and sudden (which is what most people do to it, complexity doesn’t make for good sound bites). We discussed thoroughly why I was considered additionally to be psychotic for a long time, and they discussed that with my case manager as well I’m told. I explained all about elves and hiding in stereotypes and psychiatric force and everything else. I suppose that was too complex too.

I told them that I did not live in my own world, I told them this emphatically. While this did make it into the second segment, the lead-in to the first segment was still somehow about how I was trapped in a world of my own. (The people I talked to at CNN were not the editors, and did not even themselves have editorial control over the content of the shows.) I told them how I disagreed with the mild/severe and HFA/LFA dichotomies and stuff but everyone by now knows what they said about that.

I told them how the video I made was not actually about autism, it was a response to the situation of Ashley X and anyone else where people assume a lack of standard communication means a lack of standard comprehension and that a lack of standard comprehension means a lack of humanity and lack of value and lack of personhood and lack of basic human rights. Like many people, they still portrayed the video as being about my wanting to take people into “my world of autism”.

They of course also did not show me after their team left on the second day, while I was lying on my friend’s couch uncontrollably ticcing and screaming, something my body reserved until I was in private and familiar enough surroundings to do that sort of thing.

They didn’t show when communication broke down, they didn’t show how I struggled to find words a lot of the time, they edited out most of my typing, they edited out a lot of the parts where I said things I didn’t quite mean to say or didn’t understand what I was saying, they edited out the times when my friend had to interpret for me.

They didn’t show a whole lot of my staff, despite my staff being there most of the time, and despite my staff actually having spoken on camera on a number of occasions, as well as spoken to them directly about me, they didn’t use any of that.

So basically, they did not show some of the things I was capable of, they did not show some of the things I had difficulty with, and they simplified a lot of aspects of my life to fit into a ten-minute segment. This is standard for the sort of thing that the media does. I actually found it quite a lot better than I expected despite these problems.

When you see someone on television, you can’t know all about them. It’s not a standard situation. There’s editing. There’s nervousness around the cameras and the intrusions. There’s the fact that you’re only getting a tiny slice of a much broader life. You can’t know what that person is like when the cameras are gone, you can’t know how they move and behave every second of every day, you can’t know their abilities, you can’t know their difficulties, you just get a tiny snapshot of their life framed in whatever way these virtual strangers want to frame it. The person themselves has no control over the editing, nor often do the reporters. Anyone who thinks they can tell all these things about a person based on a news story doesn’t really know how these things work.

And that goes for my own videos too by the way. Seeing me for a few minutes doing things specifically intended for broadcast on the Internet doesn’t equal seeing me all the time either. They are of course more accurate than something made by a stranger will be, but they’re also only tiny slices of my life. Even my blog is only a tiny slice of my life, you don’t see how I live every day. Larry Arnold as well has written about that one.

How to Boil Water the EASY Way

Finally I’ve actually gotten something done. I’ve been really wiped out lately and have been driving myself nuts planning videos and writing in my head and then being unable to make any of them. The following is a video that I based loosely on the How to make a phone call, in 70 easy steps post. Like that post, it’s meant to be funny but convey something real. (And since it’s YouTube I uploaded it to, I felt it necessary to point out that “funny” doesn’t mean people get a free pass on laughing at autistic people to feel superior to us or something.)

It should also prove useful for explaining this sort of thing to people who don’t grasp the idea that even when we’re getting a lot fewer results than most people, we’re working at least as hard as other people, possibly harder. And also to show in a pretty graphic way that this is not the same thing as procrastination. I don’t like or agree with the way these things are formulated medically. But I do know that when a bunch of objects are all triggering a whole lot of actions that have nothing necessarily to do with anything I’m trying to do, and I am trying to steer my way through these to get to the one thing I do want to do and then get that in the right order, while intermittently my body freezes up or sits down (either as a result of overload or pain, or just because that’s what happens), then it’s worse than useless to compare that to procrastination.

It’s also worse than useless to imply that a person who takes five hours to boil water should somehow be able obtain enough food and water to sustain themselves, as well as do all other necessary daily chores, without any assistance at all, within twenty-four hours. Even if they never slept at all and had no need to ever leave the house for any reason, there simply aren’t enough hours in a day for this.

A lot of people also assume these things have something to do with academic abilities. They have nothing to do with that. The implication is that if a person is good in school they’ll have no trouble with these things, and that if a person has great trouble with these things they won’t do well in school. The consequences of both assumptions can be devastating to the person involved.

So yeah, this is funny, and it’s intended to be, but there are a lot of serious points behind it and I hope that people catch those too.

“…knew the moment had arrived for killing the past and coming back to life…”

I got treated fully and consistently like a real person throughout the entire conference I just went to last week [note: “conference” is not the same as “MIT”, this was not at MIT], to a degree that I am still stunned about. But it was all done in a very natural way. There was just this background knowledge that people are people.

And one thing I learned from that is that not everything that I’ve attributed, and seen others attribute, to autism, necessarily is. Because in being treated like a person, actively rather than passively, by the majority of a large group of people around me, I discovered aspects of myself that I didn’t know existed, and whose non-existence I’d previously ascribed to being autistic.

Which got me to wondering something.

How many of the emotional and social problems autistic people have are actually related to being autistic?

I’d be willing to bet it’s less than it looks like.

I have a depth of emotion and social relatedness that I did not know existed until roughly last week. It has totally changed the way I perceive myself, and it has totally changed the way I perceive other people. It’s very difficult to perceive certain aspects of people in general if you don’t know they exist, and if the reason you don’t know they exist is because you’ve basically blocked them out of awareness in order to survive.

I was an incredibly emotionally sensitive and empathetic kid — like a lot of autistic people I’ve talked to, actually. But as an autistic kid I was also a walking target the moment I met other kids. Autistic kids, for some reason, seem to get more than the usual share of this. In fact before we moved when I was still a baby, my older brother was the scapegoat of the entire town we lived in. And as I got into school, I became as subject to bullying by teachers as I was by other students.

My initial reaction was just sheer emotional overload. I came home and screamed and cried for hours. I couldn’t understand why people hated me so much, I hadn’t done anything to them other than exist near them. And eventually I just went numb. Nothing the few people in my life who did treat me like a person could do, was enough to counteract the fact that in the majority of my life I was treated more like a target. The only way I could deal with it was to cut off the parts of me that knew what it was like to be treated like a person.

I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?

Because even the most well-meaning of our relatives can also cause problems for us in this regard. As autistic people, our responses to our parents are often (not always) different in some way than non-autistic people. Many parents unfamiliar with autism will conclude that we are uninterested in them, or even averse to their presence. Even some who see us as socially related to them will be told by doctors that, if we are autistic, this is an illusion, and that autistic children don’t relate to our parents. (Scientific studies, by the way, say otherwise. We do in fact generally have the same degree of attachment to our parents as any other kids.) The myth of the refrigerator parent has been replaced with the myth of the refrigerator child, and many of our parents will believe the new refrigerator child myth.

This in turn affects how they relate to us. If you think that your child is indifferent to you, even rejecting you, you treat them differently than you would treat a child who isn’t. You might either spend less time with them, or spend an inordinate amount of time trying to force them to connect to you in ways that might be physically uncomfortable to them. You might talk in the child’s presence as if the child is not there and cannot hear you. You might characterize the child as lacking in some fundamental attribute of humanity. You might bombard the child with overbearing social approaches that cause the child physical pain without meaning to.

Any and all of which can give us a pretty warped experience of social situations within our own families. Note: I am not trying to blame parents for children being autistic, or for their own ignorance of what being autistic is. I know that discussing parenting in autism in this manner is a taboo subject because of the old psychoanalytic theories of autism (theories I’m familiar with because my own mother was subject to them even as recently as the nineties and I’m very aware of how much pain they cause for families). But I know no way to discuss the effects of growing up autistic around families who don’t understand how to relate to autistic children, without getting into these topics, taboo or not.

An interesting aspect of this in action was the “Autism Every Day” video in fact. I showed the video to the people at the MIT Media Lab recently, but instead of watching it straight through, we stopped it and focused on the social behavior of the children in the video, and the parents in the video. The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings. We concluded that somehow through the camera person focusing on the mothers, combined with the mothers focusing on the camera people, the viewer’s focus was not on the social overtures of the children, who were then possible to describe as not engaging in social overtures even when they were very clearly affectionate, social, and concerned with their parents’ feelings.

So again, how do we measure innate level of social skill in this context? This is a context where autistic people’s parents are somehow (possibly by training from doctors, possibly through instinctively looking for a different set of social cues than the ones we use, possibly because of some other construction they have in their heads that overrides what’s in front of them) clearly not noticing our social approaches or our concern for them.

But it is also a context where many of the things — such as eye contact and physical contact — often used by parents to show affection for their children either panic us or cause us physical pain, and where our “emotional growth” might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis. Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations. To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

So most of the family situations available to autistic people are some combination of the following, at least at first:

1. Not noticing or understanding the way in which we show affection, social relatedness, and emotion.

2. Using, with good intentions, social approaches that cause pain or fear in us.

3. Forcing social approaches that cause pain or fear in us in the hopes that it will make us into more socially related people.

4. Gauging the appropriateness of our social development in terms of our ability to silently endure that pain and fear.

5. Lacking the sort of social approaches that we can actually process and handle as autistic people.

6. Hearing things said about ourselves, in our presence, that are not true but that we might absorb really early. (Both hostile things and innocent misinformation, potentially.)

This is not to say that our families don’t love us, don’t care about us, don’t want to be doing the right thing. We are born into the usual range of families that any other group of people are born into. But these sorts of things happen even in most well-intentioned and loving families.

And most of our social experiences outside the family are of some combination of rejection, ostracism, hostility, and hate.

What does this do to us?

Can anyone say that in all the time that autistic people have been studied, from the days of the refrigerator mother theory to modern-day genetic theories, anyone has ever separated out what is intrinsic to autistic perceptual structures and what is other things, such as the adaptations that we have to make to a world that is so consistently hostile to us even in environments that would seem loving to most non-autistic children (and we’re often in environments that would not even seem that)?

Because I don’t think they have.

I still have the perceptual system that makes me autistic. But many emotional and social connections are no longer walled off the way I had to make them to survive earlier in life. It’s sort of like the bruised nerve I just got at the dentist, that started out making half of my chin numb, then flooded with pain, and now subsiding to something near normal. I’m past being numb, and getting past the flood of pain, and getting to some level of whatever is normal for me.

There was a level of detachedness, selfishness (the genuine thing, not something mistaken for it), and other things, that were there almost all the time before but have melted away along with the numbness. (I know I must have caused problems for people with some of this stuff. I’m sorry.) I can feel parts of myself internally that I couldn’t before, and I can now perceive parts of other people that I couldn’t before because I was too busy denying that they existed in myself. Things are changing very fast, and although this was gradual in coming, it feels sudden.

And I want to know how many of my emotional and social problems of that nature could be truly blamed on autism (the cognitive and perceptual state), and how many could be blamed on growing up autistic in an extremely hostile environment for autistic people. And I want to know how much this discrepancy exists for other autistic people.

I want to know what a world would look like where autistic people were really and truly accepted in all areas of life, and interacted with in ways that were accessible to us. At least, to the extent anyone else is. I wonder if we would look more empathetic and more social if we didn’t have to deaden those parts of us to survive the onslaught that awaits most of us at school and other places, and if we were around enough people who resembled us that we had early exposure to people whose body language and such made sense to us. I wonder what people with autistic perceptual systems would look like in an autistic-friendly world, and whether our differences would still be too often described in terms of “social skills” and so forth.

Self-consciousness, and meaningfulness, and meaninglessness.

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

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.

A one-thing-a-month sort of meme and random other crap.

I think some combination of weather changes and other factors is really screwing with pain levels today. Right now, I seem to have joint pain all over (especially, though, my left jaw and both hands), a migraine, phantom gallbladder pain (which seems to for some odd reason flare with the migraines), and some kind of stomach pain (probably from the crappy food I had to eat for lunch, since staff didn’t cook in time and I had to get something at a convenience store instead). And on top of/underneath all that, the usual neuropathic pain that seems to be really, really bound and determined to convince my whole body it’s either sunburned or being ironed (and any spot that’s already in pain, gets extra special bonus pain magnification a certain radius around it complete with weird icy-burning sensations). And I seem to be at that stage where my body runs out of natural painkillers and just starts screaming (although I just discovered that touching near-boiling water was extremely pleasant, if dangerous, and then ran water over my hands as hot as I dared without scalding them for awhile, and feel a little better).

That is to say, if I seem grumpy today, that may be an explanation, if not an excuse. I’m currently mixing up a home remedy I use for pain sometimes in emergencies, in the hope that I won’t bug the crap out of my neighbor when we eat New Year’s Eve dinner. I’ve been alternately online getting grouchier than I intend to, or lying in bed and trying to zone out.

Anyway, here’s one of those things people do during the New Year. I’m not totally into this whole New Year thing. It’s not a point where I tend to mark the beginning and end of years, if I do so at all. It seems arbitrary. Nothing seems qualitatively different about January as opposed to December. I tend to mark years in some more amorphous way when I do at all.

But anyway, regardless, people have been doing this thing where they post the first line from each month on their blog.

January: It seems like there’s a couple ways of portraying autistic adults in most books on the topic.

February: I am a mediocre hammered dulcimer player.

March: You were the ones who watched how we moved, then said what that must mean.

April: I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.

May: It’s Blogging Against Disablism Day.

June: I’ve long thought of getting a t-shirt that says “I’m the monster you met on the Internet.”

July: 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):

August: This is largely in response to comments on a recent post.

September: I was tagged for this twice, and finally finished it.

October: This still isn’t the post I’ve been trying to write, which is more political in nature.

November: I made the following video after observing a lot of things.

December: The following is a quote (used with permission) from a chat with Laura Tisoncik tonight (all the the following are her words, not mine, but they express something I’ve been trying to express for awhile):

I don’t like this version of a one-a-month meme that much though. I think I’ll write my own in a minute.

Why we don’t do what we don’t do.

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.”

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.