Note: I’ve been trying to write a post for the upcoming blog carnival for awhile. One of the posts is forthcoming, but is going to take a long time to write, and I don’t know when I’ll finish it. It demands a large amount of precision, carefulness, detail, and complexity, and I don’t have those in abundance in my current physical state. The other — this one — I’ve been struggling with how to find the words for. I hope this post will make sense. I hope it doesn’t come across too much like a rant, it’s not meant to be. It’s not my best writing, and it’s not my best in terms of explanations of things. I don’t always explain how I got from one idea to another. I’ve done my best, though, with what I’ve got at the moment. I hope also that anyone who finds themselves referenced in here doesn’t take it too personally, because most of the things I’m referring to are done by multiple people including at times myself, and I’m not meaning the “this is bad” as “we are bad” but rather “we shouldn’t be doing this”. And now that I’ve finally finished writing my post to the carnival, I can set about actually writing the post that will be the blog carnival.
I’m sure the title of the post got people’s attention, at least if they know anything about the way I usually write and the fact that I don’t normally use this language. It doesn’t have to do with being “trapped in being autistic” or any of those awful clichés, though.
It has to do with the same ongoing conversation I’ve been having with my friend. The problem with relating such a conversation verbatim is, we share a lot of ways of understanding the world. She knows that when I say something, then I mean something particular, and I don’t mean this other thing, and so forth, and she knows a lot of the stuff I’ve left unsaid because around her I don’t have to say everything. (Normally I just forget to say parts of things anyway, but around her it matters less because she has enough of my background to know what I mean and what I’m leaving out.) And she knows how I view the world and isn’t apt to take word-sloppiness on my part the wrong way. It’s very different writing in public. And I’m both sick (same thing Joel has) and recovering from a tooth extraction at the moment, so harder than usual to write stuff.
Anyway, in our conversations we kept referring to this box. And I still haven’t the foggiest clue how to describe it. So I’m just going to describe pieces of it.
In response to my video In My Language, some people have expressed surprise at the fact that I used primarily a Western tonal system in the song I was singing. I don’t know how to put it any less bluntly: I grew up in a predominantly white, middle-class California suburb. I don’t know what kind of music people expect me to have been exposed to, but I was exposed to the same music my brothers were growing up and the same sort of musical training. Combine that with perfect pitch and you get the picture. I don’t think anyone would be shocked that my brothers use the standard Western musical scale. But for some reason people were when I did.
Similarly, some people have been very weirded out by the fact that I make my videos the same way most other people do: I film different things. I put them together in the order I want. I add sound if needed (sometimes I use the sound from the camera, sometimes I don’t). I add captions. I put the whole thing together, and I have a video. This should be no more surprising to people than the fact that someone who grew up in Californian suburbia uses Western musical scales.
Both of these reactions to my work reflect something I find hard to pin down in words, but I know it when I see it. It is an expectation that because I am autistic, then I am wholly and totally different from other people, and wholly and totally separate from the cultures that I am and have been a part of, and am “authentic” only inasfar as I differ from what would be expected of a non-autistic person otherwise of my background.
Perhaps it has something also to do with what Dave Hingsburger wrote in his post about prejudices he had about disabled people. He at one point in the post hadn’t expected a French-Canadian woman with Down syndrome to speak French. And he hadn’t expected American Southerners with developmental disabilities to behave like Southerners. He hadn’t expected us to be as much products of our cultures as anything else, and still has to remind himself sometimes that we are.
I don’t understand this expectation to be separate from my culture. It took me a long time to even notice that the expectation existed. But the expectation does exist. It’s not limited to non-autistic people, either: I see a lot of autistic people struggling to fit themselves or other autistic people into the same limited and impossible boundaries.
It’s hard to figure out exactly where those boundaries are.
I know that one of them is that if I do something that is usually associated in people’s minds with autism, then if it’s not being done specifically because I’m autistic (or specifically because of certain aspects of being autistic), then I’m doing something wrong, somehow.
Take rocking for example.
Sometimes I rock because it’s just what my body is doing at the time, I don’t even notice it. Sometimes I rock because I am in a great deal of physical pain (I do have a chronic pain condition or three), and rocking makes it hurt less. Sometimes I rock because it feels good. Sometimes I rock because I’m scared or nervous. Sometimes I rock because I’m excited. Sometimes I rock because I’m overloaded, and rocking didn’t kick in automatically, but if I do it consciously then it cuts down the overload. Sometimes I rock because my body feels forced into making that motion and I can’t stop it. Sometimes I rock because it’s a tic or compulsion.
I found out recently that apparently there are good and bad reasons and ways of rocking, and that some are more legitimate than others, in an autistic person, and that as far as I can tell if I’m rocking for some other reason than the approved reasons, or in some manner that causes people to think it’s for some other reason, then I need to announce my reasons so that my body doesn’t confuse people (and I’m possibly even being deceptive if I don’t).
I suppose some of this is an expectation that because I am autistic, my life and actions should all center around being autistic, perhaps especially those parts of my life and actions that overlap with stereotypical aspects of being autistic. Or even that they do all center around being autistic. I recall someone online describing a conference they went to where this was seen as a dangerous thing to assume: Many people were being treated as if they were “just stimming”, when they actually had Sandifer syndrome, a complication of esophageal reflux that causes a person to move their body in certain distinctive and unusual ways. As I mentioned in an earlier post, I think people assume that my constant leg motions while standing are part of being autistic, but they’re actually due to a pain in my legs that’s worse if I stand still.
But even outside the medical world (in which it’s actually a danger to assume these things), it’s still sure a nuisance. I am who I am. That includes being autistic: autism is an abstractified word for some parts of a fundamental, pervasive, and important aspect of who I am and how I perceive the world. I’m a lot of other things, too. I don’t look at everything I’m doing and check to make sure that it fits in a box labeled autism before I do it, nor do I make sure that I announce to the world if I’m doing something for a reason that differs from, or may appear to differ from, “because I’m autistic”. The vast majority of autistic people, I would suspect, have this in common with me.
Another situation I don’t fully understand the words for:
I’ve been treated various ways throughout my life for appearing in the minds of people around me to be oblivious to things (whether or not I was actually oblivious to things, whether or not I was aware of “looking oblivious”, etc). I’ve had various forms of violence done to me (kicking, slapping, hitting, being jumped up and down on, etc.), I’ve had people wave their hands in my face, I’ve had people wave their private parts in my face, I’ve had people scream at me, make fun of me, lecture me, talk about me like I wasn’t there, talk about me like I was there and was just being a pain on purpose, grab me and tie me down (I suppose that one falls under violence), and so on and so forth.
One of the ones I remember the most vividly, though, happened in isolation rooms. I would be there for any of a number of reasons, only a few of which actually had much to do with anything I’d done wrong. And there would be staff there. And staff would be the nastier kind of staff, the ones who handle you roughly and taunt you verbally. And I’d of course be tied down so I couldn’t really move very far. And I’d be doing my best to ignore the fact that there were a bunch of really frightening people towering over me.
Anyway, in general, just as with bullies in school, “ignoring them” or even appearing to ignore them (for instance by being unable to move or react in typical ways) only intensified their desire to provoke me until I responded in some manner. They’d start making nasty, sarcastic comments about me. Then they’d get up close to my face and do it again. They’d get right in near my eyes and force eye contact. Sometimes they’d say — with the talking-to-me-as-if-I-was-more-disgusting-than-moldy-vomit tone in their voices — something like “Quit pretending you can’t hear us.” (Other times they’d just announce loudly that I was clearly unresponsive, it depended on the staff.)
Anyway, in that particular moment, with these people in my face saying various nasty things to me and insisting I respond, I would be terrified. Because, in these situations, anything I did or didn’t do, either voluntarily or involuntarily, was punished as Very Wrong Indeed. And I would be aware that if I showed signs of recognition, then I would get yelled at for not having shown them earlier. If I did not show signs of recognition, I could look forward to more attempts at provocation before they finally gave up in disgust. There was no good thing to do, and I was in varying amounts of control of my actions, so the outcome was something on the order of me lying there and rapidly alternating between clearly looking at them and looking through them, all the while terrified that they would notice one or the other, or notice something they imagined to be one or the other, and that I would be punished for whatever it was they saw.
That’s probably one of the more extreme forms of this that I experienced in life, and I still encounter variants on this sort of thing, people waving their hands in my face and screaming at me and so forth, but nothing as awful as that. But something to note is that there was something important about who I was that was visible in that moment of terrified flickering between various ways of looking at/through them. I’m sure it came across in my appearance in one way or another, although I’m not sure which way. (I have seen similar looks on the faces of other people in those places, and it was a clear signal of something of who they were, in that situation, at that time.)
And what people don’t always know is that this continues. To this day, when I know that I am being subject to scrutiny, part of me still reacts as if I’ve got a staff person (translation in this instance: person with life-or-death power over me) two inches from my face taunting me about either appearing too oblivious or appearing too aware. (I was telling a friend that and she said something like “Wow, there’s still some pretty large chunks of institution we need to get out of you.”) And there is still a flicker within my actions — “Did they see me? Oh no they saw me. I hope they don’t see me, I don’t want to get in trouble for existing again” — visible to anyone who knows what to look for, that does say something about who I am and in particular the fact that I do exist. It’s hard to explain, but that’s my best job at explaining it.
I especially experience that kind of terror in situations where I am doing something very weird and very much beyond my control. Particularly when highly overloaded and/or getting a bad migraine (yep, some of the things that I am sure people classify as “stims” are actually adaptations or reactions to migraines or nausea, too). I got it intensely while lying down on the floor towards the end of AutCom during my presentation there. I get very self-conscious at moments like that. I was like that even more extremely during the entire CNN shooting.
Anyway, I’ve had a lot of people who don’t know me very well add to my general fear of scrutiny, by seeing those flickers of fear during those moments and assuming they come from some other source. My manifestations of a fear of scrutiny get, instead of understood in their proper context (and even as a way that you can see who I am, more clearly than you can see it by looking at much else about me at that moment), scrutinized in a way that makes me come out looking very bad, which makes me afraid of scrutiny… which clearly spirals into a nasty feedback loop.
And that seems to happen because of another box I get put into as an autistic person, where somehow reactions like the ones I’m actually having are out of the question because either people don’t know that such experiences are possible, or they don’t believe that an autistic person would respond to them in the way that I do. Or something else that I’m not describing as well. A friend seemed to know what I meant, I’m hoping maybe someone else will too and fill in the details on this one.
Anyone who thinks it’s really fun to analyze my every movement in absolutely minute detail and read assorted (usually bad) meanings into it without even asking, be aware that you’re engaging in the same method of visual dissection and dehumanization that many autistic people (and others) are subject to from psychiatric or medical professionals on a daily basis. I’ve already experienced being around people who watched me 24/7 down to the littlest bit of eye movement and read whatever they wanted into it. I have no desire to repeat that experience. If you have never experienced anything like that, be very glad. But try not to do it to others. It’s at least as uncomfortable as being ogled sexually without consent must be for people who can tell when they’re being ogled (which I can’t), and it doesn’t actually do anyone any good.
In fact, in me, what it generates is a sense of helpless terror. Not just because of my experiences while tied down and scrutinized, either. I’m very aware that my actions (whether a result of being autistic or not) look unusual. I’m not in control of most of my unusual appearance: I can shift from one kind of unusual to another, at best. I cannot look “normal” for any appreciable length of time. I can, however, sit around trying to shift my appearance around because I’m afraid of scrutiny, and even some of that is more involuntary than voluntary (especially since I have the kind of tics where you do exactly what you’re trying not to do). And it comes out looking like some weird confusing mishmash of stuff. And during all this, I am acutely and painfully aware of the possibility of someone taking everything my body is doing in the worst way possible. When I see people actually taking things in the worst way possible, all it does is confirm my fears, which sets another cycle of general obvious twitchiness into motion, where I’m trying to fight my natural tendencies and then trying to fight the fact that I’m fighting them, and of course they’re coming out all over the place regardless because I can’t not look weird no matter what.
Sure, I need to be less afraid of what people think, and in fact being on television has a way of knocking that fear out of you just by the sheer magnitude of the exposure. But people need to also be aware that just because a person is autistic doesn’t mean they can’t be self-conscious and afraid of being judged, and just because a person is putting themselves out there in public for some reason is not an invitation to dissect their every move and treat them in a way you probably wouldn’t treat them if you actually knew them as a person (whether you agreed with what they had to say or not). All this dissection does is reinforce the boxes we’re shoved into, it doesn’t challenge them or look beyond them or notice that all that stuff a person is doing might have reasons beyond the ones you dream up in your head.
After experiencing all this, I have realized that I’ve judged some people way too prematurely and harshly — you can’t have the whole story from a distance, even if you think you do, and often it’s way different than it looks like. Sometimes the real explanation looks a lot more complicated than the simplistic explanations a person can come up with at a distance with what they don’t realize is extremely limited data.
The experience of people not allowing for self-consciousness or other experiences I’ve described in an autistic person, resembles something else I’ve experienced. When I was discovering that I was different, and discovering that I was falling more and more “behind” by the standard yardsticks of the social world I was in, I started fishing around for answers, and settled on the idea that I was “going crazy” (not too specific there, but I was a kid).
I started force-fitting myself into that and the other other boxes being given to me by those around me (including kids at school, psychiatry, etc) because somehow the idea of fitting into a box, even a very negative box, seemed like a step up from being namelessly weird in a way that I kept blaming myself for.
And it gave me a false sense that I was actually in control of my weirdness, rather than my weirdness being something that just was and was beyond my control, which I greatly feared because that would mean that I couldn’t change it. Similar to a relative of mine who literally said, “I don’t want Asperger’s because you can’t cure that” and tried for a time to view himself as purely “neurotic” and therefore presumably more fixable.
And then various circumstances in my life increased the pressure to pass for “crazy” (passing for “normal” was out of the question), and even to “pass for ‘crazy’ trying to pass for normal” past a certain point, and so on and so forth. And things spiralled out of control and it took me a years to drop that act, which I did in a very haphazard and non-graceful way and then put behind me as rapidly as I could because I was very ashamed of myself (somehow pretending-to-be-‘crazy’ is more shameful and bad in most people’s eyes than pretending-to-be-‘normal’ even if they amount to roughly the same thing with the same motivations).
(All of this is an oversimplification of what happened. I am leaving things out. Many things. I always do. This is unavoidable unless you want this practically book-length.)
Anyway, all that stuff, I get the sense that some people find it impossible that an autistic person would have had that level of insight, and that level of agency, to be aware of how they were being pigeonholed and to fit themselves into it, to have those particular fears, and to react to their fears and to what is around them in that level of an aware and intelligent manner. (That sentence right there is the part that connects this to my reaction to scrutiny. I think people’s reactions to both of these things stem from sticking autistic people in roughly the same part of the box.) Some also find it impossible that an autistic person would feel so much shame over this that they would not want to talk about it much. This is probably also why, when autistic people force-fit themselves (or other autistic people) into the “autistic” box rather than the “crazy” box, few people notice — they don’t think us capable of things like that.
It is also a major flaw in psychiatry. The system, in general, does not seem to recognize that many of its patients will be force-fitting themselves to what they think the system wants to hear or believe about them, or into boxes that seem to fit better than “no-box”.
Practically the only context in which they acknowledge it happening, is in what they consider a desire for staff’s attention. It seems that many people who work in that field are egotistical enough to believe that people frequently want the kind of terrifying attention they tend to bestow on people. In fact, much of the force-fitting I have seen in psychiatric setting, among me and others, stems from fear of staff, or sometimes defiance of staff in an attempt to reassert people’s humanity, or fear of the horrible things that befall those who don’t neatly fit into categories. Certainly not desire for staff.
This all brings to mind — associatively rather than logically, and I apologize for the amount of skipping around in this post — an autistic boy I knew in one institution (who was said to be totally oblivious and all sorts of other things he wasn’t).
His hand thumped his face lightly in a way that was, from the look of it at least, an unconscious mannerism.
A girl who lived there (and who over-identified with and emulated staff) smiled at him, “gently” grabbed his hand, and pulled it down, while a staff person looked on approvingly.
His hand immediately went up and kept thumping his face again, in the same manner as before.
The girl again smiled at him, made eye contact, “gently” grabbed his hand, and pulled it down. Staff again approved of the girl’s actions (and later commended her in front of everyone for being “good with” this boy).
The boy looked at the girl. Then he looked at staff. Then, smiling, he picked up his hand in much more slow and deliberate-looking manner and brought it up to tap his face again.
My interpretation of this was something like what it’d have been for me. And this boy couldn’t talk, so he can’t verify or deny my interpretation, so take it with a grain of salt. But it was something like, “This is my hand, and I’ll do what I want with it.”
The staff gave the girl a knowing look (a sort that included the girl temporarily in the category of “like staff and not like this boy”), and with the same knowing and superior sort of tone in her voice, said, “See, now it’s become a game” (she said “game” with a drawn-out emphatic “a” sound). The girl got the same knowing and superior look and tone to her as the two of them discussed how he was now doing this “for attention”, which they of course would now withhold from him so he wouldn’t get any ideas.
The idea that the boy could well be asserting his reality, and his autonomy, and his right to control his body and not have it grabbed away from him while he was engaging in totally harmless activities, and that there was something of who he was showing through in that action, totally escaped them. They were too wrapped up in the idea that he really wanted their attention. And they were probably, as I mentioned before, unwilling to attribute to an autistic boy with an astronomically low IQ score the kind and level of agency, intelligence, self-awareness, social awareness, and autonomy he was always demonstrating around them. They were fitting him into a box even as he was quite likely trying to struggle out of one.
(The story I just told ties into several of the things I mentioned before it, with regards to me and what people do and don’t expect out of me as an autistic person. I can’t tie them all back one by one and I hope readers will make the connections.)
They fit other people into boxes, too. There were many things people did that were standard human reactions to institutional and other environments. Reactions to having your selfhood under attack, attempts to make sense out of the world and respond to it in some way that allows for your humanity, and so forth, were all pathologized. I know an autistic woman who was in some of the same places I was in, and if I recall correctly she was labeled with oppositional-defiant disorder for, among other things, resisting her incredibly strict behavior program. I saw a smart girl who’d organized ward rebellions and enjoyed being a wild teenager, labeled with borderline personality disorder because the staff didn’t like her. I see this sort of labeling carrying over to various places on the Internet, where when people don’t like or don’t understand why a person is doing something they try as fast as they can to come up with a personality disorder or psychosis or something to best explain what the person is up to. As if there’s this thing inside the person’s mind driving their behavior, rather than the person themselves being a complex human being who is or was trying to figure out what to do in a given situation. I can’t stomach the psych-label-from-afar brigade for very long, but it’s out there being its own sort of box.
I find autism taking over a lot in the blogging world, too. I find myself pigeonholed as an autism blogger even if what I write has broader implications than that, even if I find myself connected to the psych survivor, DD self-advocacy, and disability rights movements just as much as I do to the autistic liberation movement, even if I feel just as disconnected and out of place in every single one of those as I do (which is a lot).
I also find that I write things about general experiences in my life, and people respond with things like “Hey, it’s not just autistic people who experience that, you know,” even if I didn’t particularly relate the experiences to being autistic.
I have a life that is and has been more than just a litany of (medicalized) diagnostic criteria and so-called “symptoms” of autism. I have a life that has been shaped by far more than being autistic. I have a life that includes all kinds of abilities that are not normally attributed to autistic people but that near-universally exist in autistic people. I have a life where being autistic is not the center of it. (None of these are to say that being autistic isn’t important, or that it can or should be discarded, or is bad.)
These statements are likely to be true about the vast majority of autistic people. But those darned boxes follow us around everywhere whether we like it or not. Having force-fit myself into boxes, and been force-fit into boxes by others, in the past, I now try to live my life in a way that says, “What box?” and totally disregards whether what I am saying and doing will be inside or outside of these boxes. But there are many penalties for doing that, which include reactions by both autistic and non-autistic people. Many of the autistic people who react the strongest are struggling with these boxes themselves, and do not fit in them any more than I do.
I understand very well why a friend, although she has written her autobiography, refuses to publish it. She knows that she will be fit into autism boxes, and possibly even made into a box for other autistic people to fit, which is unfair to both her and those other autistic people. She knows that people will view her entire life in terms of being autistic, rather than in terms of the person she is (who is an autistic person, no doubt, but is a lot more than that).
I understand also why another friend of mine is very openly disabled but doesn’t discuss specifically that she is autistic. She knows that the box will come crashing down to hem her in the moment she does.
I understand why some autistic people I have met and talked to, refuse to identify with the word “autism” at all, despite the fact that they’re definitely autistic. To them, the word “autism” has become synonymous with the boxes that autistic people are put into, and they want to live their lives, not be forced into boxes.
Autism is not the imprisoning box here though. Autism is just the abstract term for a certain way that people’s brains can think and process and respond to information. The box is what takes the myriad of full, whole, varied, and beautiful people who share the characteristics known as autistic, and draws jagged lines and boundaries straight through the middle of us in ways that cut like a knife. It defines some characteristics as okay for autistic people to have, and others as definitely not okay, and penalizes those of us who admit in one way or another that we will not be confined.
As autistic people, we have a choice in our ways of responding to this box.
We can try to force-fit ourselves into it as neatly as possible to avoid the penalties of being caught out of bounds. I have done this. I understand why people do this. I can’t wholly fault people for doing this, especially when the consequences of revealing the parts of us that fall outside the box can be deadly. (And in some circumstances they can be.) But I wish nobody had to.
We can also try to force-fit each other into it, policing the boundaries of who counts and doesn’t count as autistic, not by who really is and isn’t autistic, but by who fits into the box and who doesn’t. This is a favorite pastime in parts of the autistic community (and those who think no groupthink exists in this community are kidding themselves), but it’s a destructive one that makes people afraid to be or show who they really are, and makes more people likely to fear lack of acceptance if they don’t fit a mold. (Yes, autistic people can fear lack of acceptance.)
We can totally defy it, trying to do as many things outside of it as possible. Again, I understand the impulse, but I’m not sure this is really much better than trying to force-fit ourselves into it. Either one of them is force-fitting, and either one lets the box control you. Defiance of everything someone tells you to do is just a veiled form of obedience in the end.
(And I’m sure there’s tons of other possibilities, some of which I can think of, some of which I can’t. Insert them here…)
Or we can try as much as we can to live our lives as if this box doesn’t dictate anything about us. This is the one I really try to do these days. This is the one I favor. We can’t pretend not to be influenced by society, because every last person is, since we are all, even the most isolated, part of society and doing the influencing just as surely as we are influenced. But we can try to live our lives as who we are, not as caricatures of the autism-box or its opposite.
This “What box?” approach will have consequences for us, and some of those consequences will be negative. But it will also have incredibly positive consequences.
I read Mozart and the Whale recently, the autobiography of Jerry and Mary Newport, and they tried their best to be totally honest, and not to shove their lives into the box of what is expected of autistic people. They were very successful.
As a result of reading a version of their lives uncensored by the usual box that I see invisibly censoring most autistic people’s autobiographies, I’ve gained the courage to talk about parts of my life that I have been terrified to talk about before. Many of which fall far outside the boxes expected of autistic people, but are incredibly common experiences from what I’ve seen. I now want to talk about those things, to maybe have the same freeing effect on others that Mozart and the Whale had on me.
If I had read an account of some of the things that happened to me, written by someone else, then a lot of bad, tangled parts of my life might never have happened. I don’t totally regret those parts of my life, because some of them have forced me to grow in certain ways, but neither would I wish them on anyone who could possibly avoid them.
If everyone who gives accounts of our life (publicly or privately) is busy letting fear of the box censor those accounts to only the parts acceptable to the box, then nobody facing similar experiences can learn from us, because our accounts of those experiences will be skewed if we mention them at all. While I can’t blame some people for force-fitting themselves to a box, it perpetuates the power of the box and makes others more likely to force-fit themselves as well, and becomes a self-perpetuating cycle that’s hard to break. And I see it all the time (not just in the autistic community, but it’s the autistic community I’m thinking of right now — and anyone who says “but autistic people are incapable of this,” has gotten some of their information from the box again, because autistic people do this all the time).
So I wish on people, in general, the ability and the courage to live their lives in terms of “What box?” rather than in terms of one or another form of obedience to destructive unspoken rules that have nothing to do with how our lives really work or who we really are. The jagged lines of the box, that cut straight through important parts of who we are, and tell us which parts are acceptable and which are not, in a wholly arbitrary way… these lines are what should not be acceptable. Our lives — and not some box — are what define what autistic people’s lives can look like, and that is broader and more varied than any box will ever have it.
