Category Archives: Cognition

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

Little phrases.

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This week.

I just put that phrase in a sentence starting, “Whereas for quite some time this week I’ve had the ideas…”

But I didn’t mean this week. I meant, this-arbitrary-measurement-of-chunk-of-time-longer-than-a-day.

I could’ve said, the past few weeks, this month, the past few days, last month… those are all phrases in my repertoire for that kind of thing, and they pop out interchangeably.

This is, I suppose, one of the hazards of using and learning language by pattern. Especially when I’m tired, I’ll know which phrases “sound right” together, and “go right” together, but it’s really, really easy to forget to check them against what I’m actually meaning. So “some kind of chunk of time” simply becomes substituted with any chunk of time. A particular topic area gets substituted with its opposite without noticing, because both are connected in some way in the pattern system in my head.

And my speech seems irreparably that way, patterns devoid of internal meaning for the most part, or only tangentially tied to it. But somehow, even though I’m clearly using the same mechanisms while typing, they seem to be tied closer to thought and experience and so forth. Except when I’m tired or hungry or sick or overloaded or something, at which point things start falling apart more.

What people will notice if they see me type, is that while I make the usual kind of typos sometimes, the most common kind of typo I make is a whole-word or whole-phrase typo. My fingers will spit out a phrase that is not the one I want and I have to delete and go over it several times to get the one I do want. I’m not talking about subtle variations, either. I’m talking about things that change the entire meaning of a sentence, but that don’t have to sound as if they’re wrong somehow.

It seems like, there’s a phrase machine somewhere in my brain, and it spits things out without my thinking about it. It spits out words, or chunks of words, according to pattern, not according to tying back to something in my head or in my experience. It does this automatically and my job is to insert the right meanings so it doesn’t veer off course somehow.

It’s very easy to get it to veer off course, too. Consider the following sentences: It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, because they’re supposed to be there. It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, in order. It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, that are closer to one thing than another. Those sentences are all of course demonstrations of the phrase machine in action. They make sense, but they’re not necessarily what I’m trying to get at at all.

I have noticed, though, that there’s a quality to this, that I can sometimes see in other auties, when they are struggling with language, yet still appearing fluent in whatever their preferred form of language (written or spoken) is at the time. One of the first signs I see is a sense of disconnection from the words in the person making them. Even if the words are the right words, the person somehow sounds far back in their head behind their voice, as if their voice is a wall in some respects rather than a messenger. There’s a distance there, and it’s even more obvious when the person is clearly using a lot of stored phrases. I don’t know how I hear those things in other people, though, I just do.

And that is the ramble I have created on the basis of a simple-looking time error in a sentence.

Editing.

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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.

If you recognize me.

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This is a purely pragmatic post I’m trying to write here. I don’t mean any offense to the guy I talked to today. I know he didn’t mean anything bad and didn’t know any of this stuff. He was perfectly nice to me and had no way of knowing what was going on. Etc.

If you recognize me in public. And you don’t know me. (Knowing me online counts, as in interacting with me a fair bit on blogs and lists and stuff. That’s fine. That’s knowing me for these purposes.) There are some things you might want to know before you decide to strike up a conversation.

Today was one of two days this month I’ve been outdoors for anything other than a medical appointment. I was going to the bookstore and then I needed to take care of something at the bank. The reason I haven’t been able to go out much is the grass pollen, which is my most severe allergy, and I’m still not fully back to normal from the last asthma mess. (That’s why, if I’m outdoors, you’re likely to see a pollen mask on me, although I take it off indoors.) As in, I haven’t even crossed into the mild range of asthma yet, although I’m getting better.

I can only go out when there are staff with me. Staff come in shifts at certain hours. The morning shift ends at 12:30.

I was on my way out of the bookstore around 11:30 when someone saw me, said he’d seen me on TV, and struck up a conversation. I have a very hard time getting out of conversations. I wish my staff had been there. She wasn’t there that moment because she was going outside for something. I had no way of contacting her. When I’m concentrating on talking to someone I have a really hard time simultaneously figuring out how to stop talking to someone and why to stop talking to someone (or why to do anything for that matter). It took everything I had to get out of the conversation half an hour later.

Half an hour later it was too late for my staff to take me to the bank. It was also too late for her to wash my pollen mask, a task which had to be moved to the next shift, and depending on how long it takes to dry it might affect my ability to go out to a planned event tomorrow.

I am not trying to be unfriendly. I am not trying to imply that anyone who has done this to me has caused all these things on purpose. But please be aware that if I’m out lately, I’m out on a time schedule, that the amount I have to go out affects my health in various ways, etc. So I might make an exception if I already know the person (the same way most people would make some exceptions, even ones that change their plans or health, for unexpected friends, including online friends), but if I don’t know you already, then getting to know you right then isn’t going to be the best time. And that since I have a really hard time disentangling myself from conversations (because of the amount of attention the conversation itself takes), it’s probably better not to start one unless you’re going to introduce yourself as someone I already know or something, because staying in a conversation with you for half an hour doesn’t mean I want to, it just means I’m doing what I think I have to, which is come up with new things to say in response to whatever I can parse out of what you’re saying (and I am likely parsing far less of what you’re saying than it might sound like, I’m very good at sounding like I know what people are talking about when I don’t).

And (probably obviously) this doesn’t apply to social events or conferences where the point is partly to meet new people. And unfortunately probably most of the people likely to do this to me have not read this blog. But I thought it was worth mentioning in case anyone runs into me in a store or something (this sort of thing has now happened more than once, including while trying to visit and advocate for a friend in the emergency room, although in that case the friend was recognized too I think so that got interesting).

Mental age is not acceptable.

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In the posts about Ashley X some people have been referencing mental age again. Then Susan Senator posted the following (emphasis mine):

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

(I’m going to skip over the idea that Nat is not strong, not his own person, and that it’s not possible for him to go out into the world without his mother, and just focus on mental age here, but those are problems too.)

Please get straight what mental age actually is: It’s a myth. It says that if you score the same level on a certain test, that the “average” person of another age does, then your mind is really that age. That means that at the age of five my mental age was supposedly eight, at the age of fifteen it was supposedly eighteen, and at the age of twenty-two it was still supposedly eighteen. (Unless all my calculations are off.)

Do you really think that at five, I was somehow like an eight-year-old? I was not like any eight-year-old I’ve met. And at the ages of fifteen and twenty-two I was not like any eighteen-year-old I’ve met. I was eighteen when I was eighteen. Period. That’s the only time I was ever eighteen. Do I think differently than others? Yes. Am I a different age than I really am? No. Is it useful to construct me as if I am? No, it’s detrimental.

To say someone has the mind of a child (or an adult) because of a test score is like calling them a cat because they can’t fly. It’s nonsensical. It’s offensive. It’s responsible for some of the worst atrocities towards people with intellectual disabilities. And it’s not okay.

This is similar to those diagnostic parlor games that some autistic people like to play, while other autistic people are in the psychiatric system. Only this is idle musings about “mental age” instead of about the fine details of whether someone’s a sociopath or not. It’s just as bad. It does just as much damage. It should be accepted just as little. Mental age is not an okay construct to run around playing with. It’s a dangerous one, it costs adults our autonomy on a regular basis, it’s the basis for most of the restrictions placed on people with developmental disabilities, and it is not okay no matter what the excuse. People who purport to support the rights of people with developmental disabilities ought not to invoke it.

“Been there. Done that. Preferred to grow.”

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Found through a post at Moggy Mania:

The other story from a ‘Pillow Angel’ Been there. Done that. Preferred to grow.

I’ve read McDonald’s (auto)/biography before. And she has a webpage here

A quote from her article:

At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damageat the time of my breech birth. Like Ashley, I can’t walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn’t provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn’t learned to walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, “Been there. Done that. Didn’t like it. Preferred to grow.”

[…]

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means “brain damage which isn’t going to get worse.” It’s occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley’s doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

I’m particularly (but pleasantly) surprised that she stood up forcefully to Peter Singer, because I know he’s a personal friend of hers, and that people often won’t challenge their friends in public. And he was badly in need of challenging here by someone in the know.

How to Boil Water the EASY Way

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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.

Updated blog theme.

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The theme was in bad need of updating anyway, and we’ve just changed servers at autistics.org (and various complications of that, rather than my mucking with themes, is what took my blog down the other day) which seemed as good a time to update as any. And I’m stuck inside for the most part until the pollen count goes down, and have little else to do. So I updated it.

The picture at the top is the view from my old apartment window in California. It’s a view I’m quite familiar with because my old apartment was inaccessible to me in many ways (not just wheelchair — it was also too hot and the flooring patterns made me get stuck more easily) and I didn’t get the chance to move around a lot the way I do now. Plus my neuropathic pain condition wasn’t treated for part of that time (the last few months before I got it treated I spent so long in one spot that I had to recondition myself to sit up afterwards), and I hadn’t got a wheelchair yet at all for part of that time (which drastically reduced my activity level as well). So I spent a lot of time looking out that window, and am very familiar with that view.

It actually fits with the theme of this blog in many ways, because I remember getting an email from someone who couldn’t imagine being stuck in one place for as long as I sometimes have without wanting to die or something, and I remember thinking that there’s actually stuff you miss by not being stuck in one place for that long, just as there’s stuff you miss when you are. I know every detail of that tree, of the lives of the birds in the birdcage across the courtyard, of the various plants, and so forth, to a level that most people who just walked by or glanced out the window sometimes would not. There’s a whole lot of life to be experienced whether you’re stuck in one place or moving around all over. That’s part of the basis for my post Life’s Infinite Richness.

I’m still working out some of the annoying formatting problems of the new theme, but everything should be back to normal relatively soon. For instance, the stylesheet was inexplicably making all images left-oriented and inline regardless of where I tried to put them, and I fixed that, but there’s still a few more minor irritating bits to work out. (Such as link categories, which have stopped holding any meaning even before I changed themes.)

Can any Firefox users tell me whether the comment fields are now autofilling to something other than the name you usually use? Mine are inexplicably filling in with Ettina’s name, my email address, and Ettina’s Blogger profile. But they’re only doing it in Firefox, not Konqueror.

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

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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.

Standard

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.