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[I’m sorry about not having the blog carnival post out yet. I’ve been working on it. Today is going to be a busy day. I will try to get it done by the end of the day.]
Someone wrote something privately where they referenced my last post. I can’t reference what they wrote directly, because it was private, but it gave me an idea I wanted to post about in addition to my last post. (And I want to give them credit for reminding me even if it’s anonymous.)
And by the way, I know that in this post I appear to be fitting a number of stereotypes about autistic people. Please be aware that not all autistic people fit these stereotypes, and that even I might not fit them in the exact way the stereotypes run, and that someone not fitting these stereotypes does not mean they’re “less autistic” or something.
It’s interesting to me that when doing something in the presence of other people, there is an assumption that the thing is done in order to affect them in some way, or as deliberate communication with them in particular, when it might not be something like that at all.
One thing that leaps immediately to mind is the fact that I used to dress in an extremely unusual way when I could get away with it. I particularly enjoyed soft fuzzy things and shiny things. I also at various points in my life liked to wear jewelry that I could play with all day, such as bells and things that caught the light in particular ways, and I liked hanging things out of my hair because I liked the way it looked if I saw a mirror.
I guess the first time things puzzled me in that regard was when my mother used to ask me, when I came home from school, “Did anyone notice your ______ today?” where ______ was some aspect of my appearance that had been changed recently. I was extremely puzzled by this, because I did not do these things in order to be noticed, and I also didn’t notice whether anyone noticed something about me or not. That wasn’t why I did things like this. (Edited to add: My mom emailed me to tell me that she didn’t mean that I was doing it for attention, but rather something else.)
Other people seemed to think I did these things to be noticed, too, and I heard a lot of scathing remarks along the lines of “You just look like that for attention.” Actually, I found compliments somewhat aversive, and also found comments along the lines of “You just do that for attention” aversive, so if people’s reactions had been my main motivating factor I would have dressed much more plainly and typically so as not to stand out and draw comments.
I have also always done a whole lot of things with the sole goal (if conscious or not) of reducing overload, comprehending things more, and being more comfortable, as well as just because I found them fun.
Once, during a loud performance by a school band, I clapped my hands over my ears in a rhythmic way. Pretty soon, unbeknownst to me, my entire class had joined in, presumably to see if it was something fun or not. I got in trouble for apparently instigating everyone else to do this, when I hadn’t even been thinking about anyone else. (I also was unaware it would be construed as disrespectful to the band.)
I’ve done the same sort of thing with rhythmic blinking, which I used to do a lot of in order to make the blobs of color generated by my retinas dance around in the air. I often move things in my peripheral vision to ward off migraine-induced visual overload. I used to handle having too wide a field of vision pretty simply — by taking all my hair and putting it around my face like Cousin It. And I move my body in a wide variety of ways, some more voluntary than others, in reaction to what’s around me but not with any intent of influencing the people around me or creating any particular image of me in their minds.
(One possible exception being that I used to have a compulsion to make people utter a particular word — the word changed from one point to the next — but part of the compulsion was to not let them know that this was what I was doing. And even in that, the goal wasn’t really the attention itself, but a weird compulsive desire to hear a particular word. I have only met one other person with this particular compulsion, so I doubt it’s a really common one.)
I can also remember in school, having to (I’m not sure why) flap my sandals so that they would hit the pavement hard with a loud slapping sound. I couldn’t seem to walk any other way even if I tried. (This was right around the same age I was developing vocal tics, so maybe that’s my answer. Or maybe I just liked the sound.) This confused even me. But I remember my teacher at the time, explaining to me, slowly and loudly and in a sing-song voice, that I did this, “To. Gain. The. Attention. Of. Other. People.” The sound of that sentence is embedded in my brain because I heard it so much that year, always repeated in the exact same voice. At that point in my life I did not know what the word “attention” meant (my receptive vocabulary was pretty bad), nor could I really understand the concept of wanting someone’s attention in that way even if I’d understood the word, and all I could really understand was the tone of disapproval in the teacher’s voice, but also the tone of satisfied knowingness, like she had caught me out at something. This puzzled and troubled me for a long time, and I wondered what I was always doing that was so wrong.
If I’d known what attention meant, I’d probably have tried to avoid it. Not that I didn’t like any attention, but then, as now, I prefer friendly and quiet sorts of attention. Loud congratulatory sorts of attention made me cringe (some still do), as does the “negative attention” that people so often assumed I sought as a kid. Direct communication of an emotional kind, even of a positive sort, and especially if it made reference to something supposedly going on inside my head (whether it was or not), was often the sort of thing that confused and scared me. It’s not other people’s fault for not knowing that, certainly, but I still react that way, which is one of the things I find pretty aversive about publicity. It still makes me want to squirm around and run off, although certainly less intensely than it used to. I prefer most of my attention to be mutual focus on something rather than focus directly on me, and I’ve to my knowledge always been like this, I’ve just built up some amount of armor against it over time to survive in a world where direct regard of certain sorts is a matter of course. I like having friends, I like spending time with people, I like when my friends care about me, I like caring about my friends, I just don’t like certain kinds of attention, especially the kinds people usually mean when they call someone “attention-seeking”.
There are also plenty of things where I’m doing something in reaction to some aspect of other people, but not in order to provoke a reaction out of other people. Unfortunately even the things I do to avoid attention come across to some people as attention-seeking.
What I’ve found really interesting (and by turns frightening, amusing, exasperating, and annoying) about all this is that people seem to assume that the vast majority of what another person does is directed at them in some way, or at least directed at making a specific impression on them. While I now, out of self-consciousness, react to my fears about what other people think (and what they might do to me based on what they think, more to the point), the vast majority of the strange things I do have nothing to do with what other people think (or if they do, it’s in a roundabout fashion, not in the way people would assume). There is often an internal reason, or several internal reasons, for doing what I do, sometimes known to me and sometimes not, but only very rarely does it have anything to do with influencing or manipulating people or gaining their attention or even communicating with them. (And those things that are genuinely intended to communicate, you have to know me pretty well — or know that system of communication pretty well — to differentiate them from other things.)
I am very curious as to how much of most people’s actions are directed at the goal of gaining the attention of or manipulating other people, because the amount I get accused of things like that seems all out of proportion to the amount that I actually do it (which in both cases is probably less than most other people do it, in some cases far less). I’ve encountered a few people who even have read (and believed) some theory that practically everything a person does is designed to get them various units of positive and negative attention (I can’t remember the exact words for this, but there was a whole jargon around it), and I found that a pretty alarming and egotistical-sounding construction of the world, and doubted it could possibly be true. Interactions with such people tend to be frustrating because they take every single thing a person could possibly do and assign bizarre motivations to it. (Some of these people, by the way, were autistic, so I’m not posing this as an autistic/non-autistic divide, if anyone’s wondering.)
But I don’t know how much of most people’s actions is geared towards gaining various sorts of attention. Most of my actions don’t have much to do with attention at all, but many of the ones that do have more to do with warding it off (my first interpretation of many kinds of attention, positive and negative, is as if it’s a threat) than gaining it. Given the amount that many people (both autistic and non-autistic) see “attention” as the primary motivation of most people as far as I can tell, I wonder exactly how commonplace it is (I also wonder what’s so bad about wanting attention, in people who want it — why is “attention-seeking” an insult in a social species?). It sound frankly pretty exhausting, I don’t think I would be able to constantly measure and adapt my body to influence other people or gain attention from them, even if I really wanted to. Are other people constantly doing that? If so, where do they get the energy? Or is it that they actually believe the attention they themselves bestow on others is so pleasant to be on the receiving end of that everyone must want it? Do they really not see how many of a person’s actions can be for internal (not necessarily selfish, just not done for the attention, manipulation, influence, or gratification of others) reasons that have nothing to do with other people at all?
Also, I just remembered something I’d forgotten for years. When I was beginning to have problems with obvious autistic catatonia, I began to have periods where my movements slowed down, and my speech either slowed down or stopped. These things happened more often in less familiar environments – school, my brother’s house – because of overload. So these things would be happening in front of my brother.
And I guess my brother really had done a lot of stupid things for attention over the years, at least the way he told it. And after reading a book by an autistic man who reminds me a lot of him, I began to realize that some people really do do all sorts of weird things because it will get them attention, even if it’s negative attention. And so I now understand why my brother, who apparently did such things, would assume that I was looking for attention at the time.
But what he did was still inexcusable, to me.
If I started having trouble moving, or talking, he locked me outside his apartment, in the middle of the night, in the cold.
Periodically, he would open the door. If I moved towards the door, but was still moving slowly, he would tell me “ah - ah - ah – no, you don’t get to come back in until you stop looking for attention”. I wasn’t looking for attention, I was looking to come in from the cold in a neighborhood where I’d seen vicious fights break out on his front lawn. And the only way I could move was slowly. I didn’t have multiple speeds at that point. It was slow, or nothing.
I later heard him telling my other brother about it – “…and she tried to come back in, still wanting attention.” With this… knowing… sound in his voice. Like he knew the real reason I wanted back indoors.
So I basically had to sit out there until I was able to move and speak properly again. If I tried to come back and I was still moving slowly, or nonverbal, or had a “blank” facial expression, then I was not allowed in. I was only allowed in once all of those things had stopped. And then I still got lectured at for doing stupid things for attention.
Which actually delayed my diagnosis and treatment for quite some time. Not that anyone knew what autistic catatonia was back then. But I would have seen a neurologist several months sooner, had either the school or my brother reported what was happening without making it seem like I was “doing stupid things for attention”. And plenty of people at school, including teachers, had witnessed this stuff over and over again, including in situations where a normal person would call an ambulance (like the time I froze completely in place, staring straight at a bright light source, with eyes that didn’t move or react to light). I don’t think the teachers thought I was seeking attention, but I don’t know why they never sought medical assistance for me in situations like that, nor contacted my parents. Even having documentation of these things would’ve helped me get a diagnosis of autistic catatonia in the long run, although I clearly managed without that.
So I guess I can understand the way people responded to harmless things like having earrings in my hair, even though I don’t like the way they responded. But the way people responded to what could have been a medical emergency was downright negligent, especially that in all of these cases there were adults around who should have been doing their duty as adults to protect me. And these adults were not protecting me. At worst, they were mocking and berating me, and at best, they were holding me at arm’s length like I’d just done something dirty and disgusting. When I was showing every sign of developing a neurological condition – by the time I saw a neurologist they were thinking epilepsy or something degenerative, and showed no sign of taking it anything but extremely seriously.
Luckily, someone took enough notes over the years that by the time Lorna Wing and Amitta Shah came out with Catatonia in Autistic Spectrum Disorders (2000), my psychiatrist remembered everything and diagnosed me pretty much the moment the paper was faxed to him. But seriously, that was a much more serious thing than just a misinterpretation of stimming. And I’m still very bothered – not just from my story, but from the stories of other people with neurological conditions – that when someone starts showing new neurological symptoms, the very first place some people’s minds leap is “sie wants attention”. That’s not okay. That’s very, very dangerously not okay. Like, I know someone with muscular dystrophy who wasn’t properly diagnosed for years because they said that her attempts to hold herself up by walking along walls was just ‘attention seeking behavior’.