The Awful Prison of Autism.

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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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

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  1. As an abstract thinking (gasp!) autistic, I really relate to this concept as a whole. I find it funny sometimes that I don’t quite get everything. It has taken me a long time to understand the “In my language” video. I chalk it up to differences we might have perhaps in background…but I recently started to understand it and see how it applies now to some other experiences in my past. I have a lot of memorable experiences with animals and some plants and a lot of interaction that “meant” something to me but was conveyed without words or what most people think of as language. I realize I do this with objects now too but just in different ways and I realize that comprehension of language is not a real issue as much as intents. I really like the fact all of us are different (otherwise, I’d learn little from others) but I’m a bit insistent on understanding. I have to realize sometimes that my understanding is always going to be from my perspective really and that I can’t expect to truly understand everyone else. I have to accept that I’m in my own box for myself (but at the same time, willing to explore the edges of it and open up parts of it, back doors from time to time when I find I’m stuck where I’m not really comfortable). I’d like to escape even my *own* box sometimes (and sometimes, it’s the result of box buildup from others) Ok, all this was very abstract metaphor but you know, I think sometimes, many of us have really good abstraction skills. (and I myself am wondering about something of a disability recently called “cluttering” which is another box which, if I use, will be a bit of a hindrance since it’s definition isn’t completely the same as my experience.) What I would like to do is try to root out all these things people have boxed me as over time and take a harder look at myself and live more exactly how I want and feel.

  2. I liked this post a lot. I don’t have patience for long posts by most people but I didn’t notice this was long until I was scrolling up on our friends page trying to find the link up top to comment at you.

    I think, since sorting and categorising things are a part of human nature, something we find ourselves doing unconsciously, like it or not, what we really need is bigger boxes. We try getting rid of boxes but instead just make new ones, or smaller ones. A lot of mental illnesses used to be lumped in one big box and they keep making smaller ones which is good if it gets people better treatment, but not so good when you have to cut yourself into 7 pieces to fit yourself in 7 boxes that are stored in different rooms. excuse the analogy.

    But we could have a nice big box for earthlings and all the critters and peoples could be a part of it. And then another box for humans. and one for elephants. and kitties. But after that it gets kinda fuzzy. Even with trees, I like looking at trees and they’re all so different sometimes I don’t know why they’re all in a box called “tree” cos they’re so different. You see the palos verde with its green trunk and itty bitty leaves and another tree with big leaves and thick bark. But even with one type of tree you got branches going this way and branches going that way and making its own pretty fractal pattern but still different from all the other trees. We need a big box called tree, all full of redwoods and palos verdes and oaks and pines. And then little boxes for the oaks and the maples and the spruces. But then after that I think each one deserves its own box because it’s so different.

    I’m in a box called Joshua. There’s a bunch of us in here, so we’re in a bigger box named after the body. there are boxes from the mental illnesses and boxes from being an abuse survivor and religion might be a box too, a big box of people who believe in the same thing. I’m in a box called “boy”, but most of the rest of the system is in the “girl” box and the body’s in it with them.

    It’s something that I’ve been thinking about for a while and sometimes I don’t know where numbers came from because how can one thing be so much like another thing that there can be two of them? Even apples look different. They had numbers before they had factories making rows of identical items.

    I’m also leaving things out and not tying things together.

  3. Ah yes, the truly uplifting and wondrous joy of other people’s assumptions (insert sarcastic smilie) From “you can’t be on the spectrum because you’ve got an imagination” to “you’re on the spectrum ergo you’re not capable of anything”, moving onto “you shouldn’t be rocking/flapping/pacing/doing whatever else that feels comfortable to you” (but it’s perfectly ok for the speaker to be twirling their hair or drumming their fingers) “and anyway you’re not doing it exactly as I saw another person on the spectrum doing it”. I’ve been fortunate to not encounter people analysing all my body movements (and extremely fortunate enough not to encounter the evil, sadistic bullies that would show no respect or care for someone, just because that person didn’t react in the way they wanted) but the one thing I have learned is that I am myself and that I am not going to fit into a box for anyone. I fit some stereotypes of the autistic spectrum, others are nowt to do with me at all and I’m not going to pretend they are just to make it easier for other people to accept me. And I’m not going to expect others to fit into a box as well. Everybody is an individual and, in many cases, context is everything in determining why or how a person does something.
    And I know full well that there are people out there who aren’t bothered about knowing the truth, who are fully aware that what they are saying is false and who persist in their accusations purely because they can’t admit they are mistaken and secondly, because they are deliberately seeking to cause emotional harm to the person they are attacking. To be blunt, these certain groups of attackers are odious, unable to truly show empathy, or understanding (now, to be fair, I’m not so good at empathy except in extreme emotional distress but I am very understanding and sympathetic) or to realise that continuing to obsess over the way a person looks, or doesn’t look, moves, or doesn’t move, is a far greater indictment of their own inabilities to interact with other people than the person they are attacking. I am not talking about the person who makes a truly ignorant comment, not out of spite, but through purely being unaware of it (I know I’ve made a fair few blunders) but somebody who, upon being presented with the reasons behind something, seeks to tear those reasons apart because to accept those reasons would mean accepting the person giving the reasons.

  4. As a kid I read something along the lines of “smooth adaptation to a deformed society creates a deformed individual” (having nothing to do with disability). I took it as a personal reminder that fitting other peoples boxes was (and is) a lousy, destructive idea.

    Wish I could find the original and find out if my memory is accurate or if I edited the content over the years. (I think it came from the A volume of an old Brittanica.) Thanks for the post.

  5. Amanda, I would have been surprised if you sang in a non-Western tonal system on ‘In My Language’.

    The diagnostic process is being put into a box called autism (or whatever) by a professional with the authority to do so. Within the autism box there are smaller boxes: ‘low-functioning’, ‘high-functioning’, Asperger’s syndrome, and PDD-NOS.

    In the novel ‘Brave New World’ one of the Controllers (an Alpha) says to another Alpha that everyone lives in boxes, but the boxes for Alphas are very large.

  6. The annoying thing with boxes is, putting people in them happens quite automatically. When you meet somone, you immediately notice whether they’re male or female, black or white, young or old, or whether they have a visible disability. I assume the same automatic stereotyping would occur if you knew a person had a disability (visible or not). For me, it’s always blindness. Whenever I do something, it’s explained by saying that “a blind woman” is doing it, whether or not the stated thing has anything to do with blindness. Lately, since finding out I’m autistic, I’ve seen an increase in “you’re autistic, so …” statements. The people who make these statements may be right about my having the stated trait or doing the stated thing, etc., but really, does it matter whether it’s due to my autism? Really, my autism is one more characteristic of mine and it certainly can help me understand some of my experiences just like blindness does, but both of my disabilities are no more an explanation of my everyday life than is being female or in my twenties or having my level of intelligence or being Dutch or having been brought up in my particular family. Each of these may interact to create my experiences, but it cannot really be said that any of them intrinsically make me behave the way I do. Like, when I was younger and had trouble adjusting to my blindness, I wouldn’t use a cane to save my life (almost literally), yet now I do use one. So is that a case of “she’s blind, so she uses a cane”? No, I use a cane cause it helps me travel safely, and the fact that I cannot travel safely without one, is cause I cannot detect obstacles visually, which is cause I’m blind. Of course, it’s easier to assume I use a cane cause I’m blind, and in this case, it’s true, but making these assumptions about every single behavior of a person with a particular disability (or more than one disability), can be quite inaccurate.

  7. You choose to call yourself an autistic person. You identify yourself on the internet as an autistic person. You have already accepted that diagnosis and “box”.

    As you know there are a variety of diagnoses on the autism spectrum. Your ability to communicate is far superior to my son with classic Autism Disorder. The means he faces much different life realities than you do. The diagnostic “boxes” are there for good and valid reasons.

  8. 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.

    I can identify with this a lot. My folks addressed my nameless weirdness from a psychoanalytic point of view, like it’s all in reaction to some unnamed early trauma, with little or no attempt to get to grips with what it actually *is* or what it entails, or how to live with it. So I’ve been craving the box for years. “Tell me what I am!”

    My weirdness still doesn’t have a name: my primary diagnosis is just ‘anxiety’ – not even a specific anxiety disorder. My psych doesn’t want to put me in a box. Well, neither did my parents, but not having one hasn’t insulated me from other people’s expectations and prejudices, it’s just isolated me from the possibility of shared terms and vocabulary to describe how I operate, and maybe some community. My psych’s starting to at least understand why I want the box, and how long I have.

  9. Harold, calling myself an autistic person doesn’t mean I have to accept the boxes that autistic people are forced into any more than saying I come from California means I have to accept being considered a “valley girl” or something (well I’m from a different part of California but you get the point). I wasn’t calling autism a “box” (you’re not the only person on this thread to have somehow missed that fact, actually). I was calling a lot of the expectations that go along with being autistic “boxes”, and I will continue calling them that.

    The particular diagnostic label I have happens to be Autistic Disorder, but you know that already. The fact that I share a label with your son does not mean that we have to be identical, or that I am calling myself identical to him, but we do share that particular label.

    But I don’t have to accept the boxes I am stuffed into for being autistic. And neither does your son. And neither do you. But I am autistic, and so is your son. And that won’t go away. Only if I believed in the boxes that people put autistic people in (boxes you seem to fervently believe in to the point where you can’t differentiate the boxes from the fact of being autistic) would I believe that made us identical.

    But your whole reply seems to be one big cry of “get back in your box!”: You appear to want me to either step neatly into the box you believe defines what being autistic really is, or to step into another box of non-autisticness and stop calling myself autistic. Unfortunately for you, those don’t fit reality, and I’m into reality more than I’m into boxes. I’m autistic, I’m even diagnosed as autistic, and I will live my life as it is, however it is, whether it fits into a box you (or anyone else) approve for autistic people or not. And I will continue to be autistic. And these things will continue not to contradict each other in the slightest. You might or might not continue to pretend that the boxes are representative of reality and to stuff me into whichever ones you please, but I’ll still be here where I sit at any given point without regard to whether it’s in or out of the boundaries you want to draw for me. I’ve been confined too long in ways you probably can’t even imagine, and I’m not going to take that anymore from you or anyone.

  10. Well, on a differently related thought, since I am not autistic and I do not know anyone autistic IRL – when I read posts here, I am reading because there are so many astute observations on life in general, and on the way authority works in current society. “I see this,” you say; and I think, “That’s right – that is what is there – I only do not articulate it because I am so prone to accepting it as ‘natural’.”

  11. As many people have said before, it is a nearly automatic process when we come across someone to put them in different categories and boxes.

    However, there are ways in which we can change our perception of these boxes so that they do not elicit “tradtional” ideas of what goes in the box and what does not. Although it is not quite as ideal as having no box at all, I believe it is the next step.

    How do we change how people perceive autism, and how the walls of the box are defined? I think you, dear blogger, are doing a great job. I think many others, both autistic or not, are working hard to change this box. Perhaps we will finally be able to blur the edges enough so that the box is not sufficating.

    I am hopeful of this change in perception of autism, as well as many other “boxes” out there.

  12. Harold, I don’t know to whom yoru comment is directed, but the very fact that you so extensively try to differentiate between different autistic spectrum conditions, that mostly only differ insofar as early language development is concerned, creates the boxes we are trying to avoid. I do not have a specific autistic spectrum diagnosis (current label is just that I’m autistic, but it is used int he broader meaning), but even if I did, that label did not intrinsically define me. The diagnostic criteria of Kanner’s autism, Asperger’s, and PDD-NOS are very similar and there is no mention of “low-functioning” or “high-functioning” in the DSM-IV, but it’s the boxes you and others create when trying to set your child apart from people who disagree with you on certain issues and also happen to be autistic, that creates a mostly false distinction. For the record, I did not have a speech delay before age three so don’t meet Autistic Disorder criteria, but when I refer to myself as autistic, I mean the entire spectrum of autistic conditions because I believe (and the DSM-IV supports me) that the differences between individuals with one diagnosis may be greater than those between people with different diagnoses.

  13. Another thing I should note is this:

    In my experience of knowing other autistic people, it is those who have been considered the least competent, given the worst prognoses, labeled the lowest-functioning, considered the least communicative, and considered the most stereotypically autistic… they tend to be the ones who protest against these boxes the loudest, because they’re the ones the most damaged by them.

    Note that I’m not talking about them as if they’re a different category intrinsically, I’m talking about the way people have been treated. The more heavily and totally people have been pathologized and considered completely incompetent, the more they tend to react against that characterization, regardless of what their actual intrinsic configuration is.

    So what Harold is saying seems weird to me. It seems that if someone is in more danger at any given moment of being put into the worst of the boxes, the more necessary it is to avoid putting them in these boxes.

  14. I think, and this isn’t criticism or preaching of any kind (well if it sounds like it, I’m sorry, that’s not what I mean) but part of the issue is you acknowledge that the box exists. Yes it is true that in order to fix a problem one must first acknowledge its existence. But I think the box issue is different. If you want to solve a problem of communication with someone, or whatever, the other party has to acknowledge the problem too and want to deal with it. It seems to me, that staff and professionals and a whole bunch of people who want to analyse every damn thing you do, think, or write……….do not want to acknowledge the fact that putting someone in a box is a problem to begin with. So, I think the only (and very difficult, understandably) solution here is to try and disassociate yourself from the knowledge that the box exists IN REGARDS TO whoever is putting you in that box, in what ever manner of style he or she is doing so. Of course, acknowledging the box problem with Laura and others who are likeminded (not necessarily autistic, but are not held by the fetters of popular psychology/psychiatry/whatever) is a good idea indeed. Heck, Athena and I might be put into boxes by people, but we are blissfully ignorant of that (again in regards to the people who might be putting us in those boxes) Athena actually might know more about that than I do. I choose to only deal with it, with others who show themselves to be more open minded about the whole thing.

    Does this make any sense at all? I can’t write much more because I am starting to lose track of what the original point I was making was………through this flow of words.

    Ivan

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  16. Thank you!

    Amanda, you have again clearly defined an issue I’ve wrestled with for a long time.

    If you’re thinking you should be writing the “what box” post for the carnival, I suggest you declare this post it.

    And thank you, professor Zero @ 11, for explaining one of the reasons I enjoy reading this blog so much. I am one of those Question Authority! people, and Amanda does such a good job of discussing the implications of actually doing it.

  17. A couple of people on this thread have made a point about there being a human disposition to ‘box’ and categorise. The worry is the social tendency to see, as my old anthropology teacher Mary Douglas put it in her book title, “Purity & Danger”:
    the good/desirable/civilised/pure Us and the bad /undesirable/uncivilised/impure Them.
    Glad this will be your carnival post.

    The bit about cramming oneself into “mental disorder”boxes so at least one fits somewhere, is a way of coping with weirdness-judgements from others that I’ve heard about from other autistic people. I am so glad to have grown up among approved eccentrics!

  18. I just watched some of your video and read the transcripts of when Anderson Cooper and Sanjay Gupta talk (or interviewed you). When I watched the video, I noticed you let your hair grow and that I kept looking at the dog and was wondering where the cat was. Also, I thought about the map of the US and the world map on your wall. Then I started to think about the beautiful view from your window of Lake Champlain. Then when your hand was in the running water, I thought about how I slept on your bed (with the cat near my feet) while you and Joel talked about technical things. Then I thought about you knowing Morse Code and I hated the use of the term ‘low functioning autism’ in describing you because I thought, she knows Morse Code and knows all this tech stuff, whereas I just go to my favorite websites and watch Law & Order. I am a visual and associative thinker. So when your hand was in the water, I thought that while I was there last summer that I read some of your books, slept on your bed, and loved your world map and the USA map. I also associate you knowing lots of tech stuff and Morse Code and I think you even know ham radio stuff. And also, looking at Lake Champlain and the hills, I found out I was looking at NY state! And I plan to go to Edmonton for the AUTCOM conference. I love Canada.

    Kathy Grant

  19. Amanda, I think your point at #14 is really important. People who remain quiet because they are terrified and paralyzed by how they are being treated are then punished for employing a reasonable defense mechanism. (Noting that there are many reasons for silence). Who is nuts here? Who is emotionally disabled? The punisher, or the punishee??

    In school, I used to sit in silence while the boys in the classroom pretended to level shotguns at me. They made pretended to pull the trigger, made exploding noises. Daily. My nickname was “Critter.” I actually hope the teachers didn’t notice this unlovely little hunt; the alternative is thinking that they did see it, did nothing, and condoned it through inaction.

    It has taken me decades to stop internalizing that treatment, to live at peace in my own “box.” Back then, without an autistic label, I was just weird, different, ugly, strange. Also gifted in math, science, english. What is the social use of academically outscoring one’s classmates? It increased their hatred of me.

    The misery of ongoing social ostracism motivated me to try to end the pain by fitting in. Which, being very bright (but not nearly as bright as Amanda) I figured out how to do.

    You know what? It’s just as empty outside the box as in it. Just as lonely, just as chaotic and scary. Those outside the box, I’ve learned, aren’t nearly as strong and brave and smart as I am. And worse, they think the box is REAL.

  20. I’m sorry for the late reply, but I’m way behind on my blog reading and trying to catch up.

    I want to print out this piece of writing and take along with me and just hand out to everyone. The only thing that I would want to change is the title, to something like: ‘Life outside the autism box’. Or something like that. I read a lot of blogs. The reason I read yours is not so much the fact that it has an autistic link. I read it because it sees the world through a set of eyes that I truly relate to. Whether I have borderline Asperger’s or not (still a big, amusing but largely irrelevant debate between me and my psychologist). It was really just a reason to start reading your blog. Now I read it because it is highly intelligent, amusing, emotional, serious, honest and, well, a true reflection of life and the world around us. Your eyes as windows to life are deeply human in the first place. They are compassionate and understanding. If it is autism that gave you that gift, I am grateful that someone as patient and forgiving as yourself landed in that position. What can I say: lots of warm affection from this side and, no, you are in no box for me, perhaps just maybe a deeply humane box, if you could accept that.

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