On growing up with strange sensory reactions, and the difference between passing and being passed off.

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In discussions with other autistic people about how other people have reacted to us our whole lives, I recently realized another thing that makes me different from some other autistic people (I honestly have no clue whether it’s most or only some). Which is in my reactions to my surroundings.

A lot of autistic people who, like me, were assumed (rightly or wrongly) to be anywhere from somewhat to highly capable by many people during our childhoods, seem to have something in common that I don’t have: They were most of the time a combination of several of… stiff, unusually formal, considered “dweeby”, reserved as far as interaction with their physical surroundings yet obviously “engaged” to a certain degree, and in general… lots of similar things I don’t quite have words for.

I was considered some of those things some of the time. But I’ve noticed some people assume that’s how all autistic kids who were regarded as highly competent tended to act. And they leave out of their calculations a lot of things that were true of me.

Yes, I was socially awkward, had meltdowns and shutdowns, and lots of other stuff. But I was most of the time very, very involved in my physical environment in all kinds of ways that made me stick out in totally different ways than many other autistic kids did. Note that it wasn’t all of these things all of the time. It was at least a few of them most of the time at minimum, and when I wasn’t hiding as well it was more than a few nearly all of the time.

I would sniff things. Books, pencils, wood of all types. If I saw a cat I would get down on all fours and politely (in the cat world) sniff their noses. I would sniff rocks, tanbark, metal, rubber, computer and TV screens, and many other things I came into contact with. Not to mention picking my nose and sniffing the contents (no I have never been able to stop no matter how much teasing or reprimands happened or even injury to the inside of my nose by peeling the lining off, it’s like trichotillomania, it’s not that easy).

I would also grab things and stick them really close to my eyes, or wave them around in the vague vicinity of my eyes (I have good peripheral vision so this means anything from just in front to on the sides). I would wave my hand in front of computer monitors. I would do things with my fingers just to watch them. I would spend hours watching ants or water (which I might also get my hands involved with) or lots and lots of other things involving getting things really close to my eyes. And chasing dust particles. Not to mention doing a very intense purr-like noise that jiggled my eyesight up and down.

I also did elaborate things with clothing, hair, and jewelry. Not for the purpose of decorating myself for the sake of others, but for the sake of being able to carry around things I could either grab and look at, or see anytime I had a mirror, or (in the case of braids) run my fingers over. This stuff wasn’t an enactment of a social ritual (which is good because sticking earrings and pins throughout your hair doesn’t get you anything but laughed at) or for any reason external, it was entirely so I could have lots of portable stimtoys. I could grab the necklaces and stare at them or suck on them, ring my bell necklaces in my ear, stare at, smell, or suck on my paisley shirts or busy-patterned skirts, run my fingers over coiled braids or other jewelry, or stare at the whole mess in the mirror.

meandbrothers

(The photo shows me sitting in between my two brothers, in my brother’s room, with lots of jewelry on, staring at one necklace or similar object.)

I also had some visual phenomena I would get really absorbed in. I see various patterns that probably range from retinal lights and afterimages to migraine auras (both my parents get migraine auras without the headache) to the occasional seizure. But I would get totally lost in that stuff, and find patterns in it the way people do with clouds. I got sent to at least two separate counselors (one in an academic summer camp and one in my brief attempt at high school) for staring at walls in my free time in order to watch that stuff. Other kids just used that as an excuse to do things like wave their genitals in my face to try to get me to stop (it’s amazing what people will do to you for the crime of not appearing to pay attention to them, even when they make it clear you’re weird enough they don’t want your attention).

I was constantly sticking things into my mouth long after that phase is over for most people. Not just pens or pencils either. I chewed sets of rubber jacks balls to the point of really embarrassing my mother once when someone caught me sticking several in my mouth on video. I did this the most often before puberty but I did it after too. I was really happy when someone gave me different lengths of aquarium tubing when I was nineteen for the express purpose of chewing. I chewed and sucked on my own skin, too, hard enough to leave marks. And my hair. And ran the outsides of my tongue over my molars over and over to create a sour taste. And had a metal necklace I sucked on and spat out over and over until the outer gold-colored metal wore off.

I also liked textures like velvet, cat fur, varnished wood, anything large and cold and flat, etc. and pressed anything from hands to cheeks to large amounts of my body onto them, or rubbed them.

I had a weird thing I did in chaotic environments like school dances where I would frequently stand right by the speaker because even though it was earsplittingly loud the music was more orderly than the crowd noises. (At first I’d dance if asked to, or outright find someone to dance with if the song was “Stairway to Heaven”, but later I found it easier to just spin in circles.) I also hummed, whistled, and sang, sometimes all in rapid succession, and had a single toned hum I would do by keeping my ears clicked so internal sounds were loudest and then humming to drown out other chaotic noise. Got pulled out of school assemblies for clapping my hands over my ears over and over to create a rhythmic pattern to people’s voices or music. Played single songs until I wore out several tapes and tape players.

And this is not to mention the spinning, which I did at every dance starting just after seventh grade instead of running up to the speakers or trying to dance with people. And which I also did plenty of without dances as an excuse. And the pulling out all the paper towels, and all the soap, from dispensers, then smearing the soap all over mirrors. And climbing things. And assorted other things that were more actions than any one sense being explored.

And doing something kind of hard to describe. In new situations my sensory input seemed more and more chaotic. (Been planning a post on something related to that too.) And after awhile instead of panicking, I’d started embracing a sense of total randomness. This is the same sort of thing that could make a person really lose it in new situations, but it’s sometimes possible to sort of ride it out like some kind of funhouse ride instead of becoming tense or fearful. (Or as an autistic friend of mine puts it, “As long as there are shopping malls, I will never need LSD.”) This is yet another thing you never hear about because it’s assumed “resistance to change” is just The Way Things Are for all autistic people instead of being one of many possible responses to a more central experience of having things become really confusing the more change or new or unexpected input there is.

And when I did talk about my special interests they were about things like fractals, chaos theory, alternate realities, and psychedelic rock bands. Or any and all kinds of surreal or nonsensical things (including going around saying weird things in several languages that I couldn’t actually speak except to say weird things in). (The embracing of nonsense being one more way to deal with the speed of things changing around that time.) This… did not help.

Then there was… the other stuff. The ways I seemed cut off from the world instead of overinvolved in the wrong parts of it.

Part of that was due to my being heavily tuned into internal sensations. Like when I would sit down cross-legged, pull my skirt across my lap, stare at it, and proceed to vividly replay in my head scenes from Red Dwarf or Star Trek (other times it was listening to white noise and picking out single frequencies to replay songs I had memorized). Other times it was just something like pulling my hair over my face like Cousin It (wonderful to stop seeing lots of overloading stuff), or sitting around with my eyes shut. Or what my parents just called “Staring” with a capital S, where I’d basically sit there and appear to be staring at nothing at all (which could range from overload to replaying things in my head to just some coincidence of my eyes and facial expression, or could even be getting lost in various visual oddities I discussed before).

The point of all this? When many people picture an autistic kid who went undiagnosed until early adolescence, they seem to picture the formal stiff thing going on. They don’t picture the kid who involved herself in all kinds of supposedly inappropriate sensory activities, and seems physically pulled towards these things as if by gravity. But that was me.

I didn’t do these things every second of every day. But I did them enough to attract all the wrong kind of notice. While some people called me a nerd or a computer or those usual insults, much of the teasing I got revolved around being very, very attracted to physical sensations of all kinds, or else looking very, very tuned out. There’s a reason my mother insists on comparing me to Luna Lovegood rather than a more stereotypical nerd (or to, say, Ernie Macmillan, who was so formal he sounded pompous).

Yeah I did get called a nerd But mostly I got other things. When you’re younger and you behave this way, you become a weirdo, alien, psycho, crazy, tard, space case, elf (yes that whole fantasy started because someone called me one — if I could pick a Tolkien creature to compare myself to I’d be an Ent) etc. When you get a bit older you get called even crazier. And then eventually everyone and their dog thinks you’re on drugs.

This is one reason that I question the entire concept of passing. I rarely spent five minutes around other children before they figured out I was different. Often it was more like five seconds. Kids weren’t generally picking up my intellect or nerdiness (they might pick that up later but not immediately), they were picking up my strangeness. Much of the time they said so quite openly and as we got older they were trying really hard to explain why I was strange. But I was always strange, there was never a point even when I did my best attempt to “behave” that this was ever in question. Even when neuroleptics drastically tamped down on my ability to explore my environment in those ways I could expect to wait seconds before I was pointedly and often out loud judged as some kind of Other. Even among kids in mental institutions where the rate of neuro-atypicality was higher, I only very occasionally connected with anyone and it was always their doing, others just either shunned me or found ways to do harm to me.

Weird thing is even though I heard all about being strange my whole life I always underestimated my strangeness. I rarely connected all the dots in others’ reactions to me. I knew I was different but since I couldn’t imagine how all the things I did looked to others, I assumed I was “normal enough” largely because of that and because I was always around myself and therefore found myself… not boring exactly, but like I was used to me. The same way I never knew my autistic brother stood out that much even though he did (although more in the stiff/nerdy way than the sensory/strange way, we are very different people).

But once I put the dots together? Passing doesn’t make sense. What happened was people saw every single thing I did and then since they didn’t know about autism they formed other explanations. So I was crazy, or on drugs, or wanted attention (why do so many people accuse others of wanting attention when the actions prompting it are entirely not focused on other people at all, while they don’t tell people that starting conversations is attention seeking even though it is???) or any explanation at all they could come up with. Sometimes several at once.

As I’ve discussed before, the drug assumption meant I have been both asked for (???) and offered pot, acid, shrooms, DMT, ketamine, speed, mescaline, harmaline, and assorted really obscure “natural” hallucinogens (I did not take more than three on that list, and only after being accused of it got me curious). This took no effort on my part, especially when attending a school so well known for drug use that it made a top five list of drug schools. All people saw was a strange girl dressed like a hippie who did lots of odd things, looked spaced out, and reacted to all kinds of sensory input in a very raw sort of way that often made me respond more to texture and pattern and color than to the socially agreed upon nature of the object. Plus I was fun to get stoned because it made me have even more sensory processing trouble and ratcheted up my anxiety so much that it was easy to manipulate me into doing amusing things like jumping out windows so people could laugh. (One of my support staff has another client who has a very severe cognitive
impairment. I was telling him about this and he told me she gets the exact same crap from her neighbors.)

Another thing that happens when people form these explanations is they begin picking up on irrelevant details that confirm their explanations while blocking out information that conflicts with their explanations. Because of my reputation for drug use, people would claim to smell marijuana coming out of my room whenever I burned incense (I never did that in my room). Have allergies that make your eyes red? Must be stoned. Have naturally large pupils? Must be on acid. Have trouble bathing or washing clothes? Drugs make people not care about that. Have fluctuations in your abilities? Must be based on when you’re high and when you’re not. You can’t win around this kind of fallacious thinking.

Kids who pass don’t get accused of being on drugs by everyone from children to teachers from the age of twelve or thirteen onward. Kids who pass as nerdy or “just gifted” don’t get ostracized and accused of being both on drugs and crazy, or sent to the counselor, when they go to a summer camp filled with nerds who are mostly classified as gifted. Most “just gifted and nerdy” kids thrive in those environments and tease the kids like me who are clearly odd for other reasons. My best friend met me in such a place when we were twelve after seeing me spinning by myself, asking someone who I was, and getting “That’s Amanda. She’s crazy.”

Nor do kids who are passing really well have it assured that they will be only given single rooms from a certain point on so as not to alarm their roommates with their strangeness (yes my roommates complained about rooming with a “crazy person” or “weirdo”). Even in mental institutions. (And kids who pass really well certainly don’t get singled out as strange in those places.) This is not passing. This is being flagrantly strange and having it bother people enough that they try to think up all kinds of reasons to explain it to themselves.

When most people explain things to themselves, odd things happen. They don’t see what you’re doing. They see their explanation. They see “crazy”, “high”, “stupid stunt”, or whatever they have explained things as in their minds. And if they have to have their expectations disturbed enough to explain things to themselves, then you are not passing.

I know a lot of people that things like this have happened to. Even people with purely physical impairments. A woman I know has muscular dystrophy and when she began hanging onto the walls for balance, people explained it away as attention seeking or anxiety induced. That’s the exact same sorts of explanations (with the addition of the ever present drug thing) that I got with a much lesser known autism-connected progressive motor impairment that caused me to freeze in place, be unable to cross certain barriers easily, or lose the ability to speak.

I once froze for a solid ten minutes, with (as I heard those around me noting) fixed dilated pupils pointed straight at a bright light, on a high school field trip. Nobody told my parents. People figured it was drugs or anxiety, and everyone was sort of pointedly avoiding the subject (and avoiding me) the rest of the trip, treating me like I had done something unspeakable. I frequently had the same thing happen in college and was said to be on drugs (never happened when I was actually on them). Happened in the psych system and was called psychotic or dissociative or just left unexplained. Happened around new agers and they insisted I was either astral projecting or somehow being very spiritual. The same thing happened to me at an autism conference, and someone with the same movement disorder told me the journal articles to send to my doctor. I did and he recognized it immediately and diagnosed me with that condition.

Is that “passing”? No. It’s “being passed off as”. It’s people seeing a thing, being uncomfortable, deciding on an explanation, and coming to remember the explanation more than the thing itself.

Similarly, now that that and other conditions have me using a powerchair full time, all the traits that had people who just saw me walking around thinking I was either autistic (if they knew anything about it) or intellectually disabled, the powerchair has become their explanation for all those traits. So now I’m back to being considered purely physically disabled by some people, which has led to overestimation rather than underestimation of my cognitive abilities.

I can do one particular thing throughout most of my life and have it explained in different ways depending on age, clothing (hippie clothes, school uniform, “regular” clothes, sloppy clothes), location (regular school, college, special ed, institution, apartment, at home with my parents), haircut (messy, combed, long, short, parted in different ways, nonexistent), range of deliberate facial expression (less or more limited due to the motor impairments), and a zillion other factors. But I’m the same person and my reasons for doing whatever it is have remained constant my whole life. I have seen kids doing things like eating paper or lying on the floor, and if they’re considered “gifted” then it’s eccentric or attention seeking, if they are considered druggies people figure it’s the drugs, and in institutions or special ed it’s because they don’t know better. But I bet the reasons for doing it are the same regardless.

But as someone who was a strange kid, and paid the price for being a strange kid, I am really uncomfortable with the concept of passing. Passing would be if I never did the things I listed in the first part of this except in private. Something I only ever managed in part. Having people constantly bugging you and making things up about you because you do these strange things is not passing. It’s having people pass things off as something else. It’s having teachers accuse you of drug abuse until everyone believes it and you become curious. It’s freezing up and having other kids laughing and jumping up and down on top of you and going “see she doesn’t feel it”. It’s being singled out for bullying even among other “gifted” kids and “crazy” kids. It’s having “crazy” or “druggie” or “does weird things for attention” be the first words people use about you when strangers ask who you are. It’s having even people you thought were your friends comment gleefully and frequently on these topics as if you are more a source of entertainment than a friend. It’s having people shake you, kick you, wave their hands in your face, and make loud guesses about what’s going on, every time you lose speech. It’s that one guy who likes to come up to you and tell you what “everyone’s saying” about you. But it’s definitely not, ever, even when doing your best acting, being treated like everyone else. Which is what passing would be. Passing has its own set of problems. But “passed off as” is not passing.

The other point of this post is that I’ve talked to even a lot of autistic people who assume that there’s only two general appearances that autistic kids can take: Sort of awkward and stiff and nerdy or dweeby, or else completely cut off from people and constantly rocking and doing other stuff like that. And while I sometimes did both of those sorts of things, I think I was usually something different from either stereotype. Much of what made me stand out and get both teased and “passed off as” various things, especially both before and after the few years I reined it in a bit, was the way I related to objects around me, and sometimes appeared zoned out. Most of which has to do with how I process information in the first place. And while I know many others who were and are like this, it seems like even many autistic people can’t resist having their imaginations constrained by the main couple stereotypes. And I almost never hear this particular appearance discussed. Lest this become a third stereotype, I should point out that there are lots and lots of different ways we can appear, and that a single person can appear different ways at different times. It’s just important to avoid stereotypes. They don’t help.

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.

27 responses »

  1. As I understand it, our ability to learn so much is in part based on our ability to generalise – not all our learning needs to be situation specific, so we learn,for example, that hot water scalds, whether its in a pan or coming out of a tap.
    Unfortunately, this very ability is what also generates endless stereotypes, because that’s what generalisation is.
    Stereotypes are like a nest of Russian dolls, seemingly infinite. We all have them, we’re all affected by them (some, clearly, more harshly than others), and they’re very very hard to fight, because they are also the basis of our learning.
    No neat answers.

  2. Thank you for writing about this. It’s one of those things I haven’t really known how to go into, and have hesitated to talk about anyway because of lingering shame.

    My behavior in public was less overtly “odd” in some ways (I think), but things were still a lot better for me when I got read as “gifted” and dweeby (or even dippy and weird–until they decided I was *too* weird for comfort). That usually did not last for long. And you made an excellent point about some of the reactions people can have when cognitive dissonance kicks in, and they have to compare the behavior they’re seeing with the mental image of the person they’ve developed already. It can get really ugly, when the behavior has not changed at all.

    People responded to me much better when they thought I was just nerdy, so I tried to fit those expectations–and it didn’t work. (Yeah, when the other misfits think you’re weird, you’re not passing.) Though a lot of my specific behaviors were different from yours, it did seem to especially bother a lot of people when I interacted with my environment in ways that, I guess, indicated just how different our perceptions of said environment were.

    I responded by turning stiffer and more formal, having started out pretty exuberant (which a lot of people didn’t respond well to, oh my no). The other “weirdness” still shone through.

    Interesting to see that somebody else tried drugs after other people assumed you were already on them. I tried a number of things after ending up on psych units; might as well be hanged for a sheep as a lamb, and all that. (It didn’t take long to find out that I hadn’t been missing much.) Part of that, too, was trying to deal with some of the sensory issues through flooding and overloading them with stimuli that started out pleasant. It didn’t end up working so well, but was the main vaguely socially acceptable way of dealing with them that I could figure out–not even knowing how to describe the sensory stuff in the first place.

    On one occasion, my mother said that “things” (I) would have been easier to deal with if I had been on drugs, as she’d feared. That sums things up pretty well.

    That’s what I meant by “vaguely socially acceptable”–it’s an explanation that makes sense to more people. It fits into the available stereotypes.

    It’s just important to avoid stereotypes. They don’t help.

    Yes.

  3. Is that “passing”? No. It’s “being passed off as”. It’s people seeing a thing, being uncomfortable, deciding on an explanation, and coming to remember the explanation more than the thing itself.

    …and suddenly my years at school (especially middle and high school) make even more sense.
    So it wasn’t that I was doing the whole “passing” thing wrong, because it wasn’t that in the first place.

    Makes much more sense now.
    Thanks. :)

  4. The point of all this? When many people picture an autistic kid who went undiagnosed until early adolescence, they seem to picture the formal stiff thing going on. They don’t picture the kid who involved herself in all kinds of supposedly inappropriate sensory activities, and seems physically pulled towards these things as if by gravity. But that was me

    I was one of those kids too, I spent most of my time outside tearing apart tree branches and playing with leaves. I played with everything and I used my overly strong imagination to turn one thing into another. I was very tactile as a child and still is. I used my hands to feel and destroy anything I could get onto. I also had a strong oral motor stim. I chewed on everything like a wild terrier. Most my sketch pencils became chew toys

    I passed for a while, but I was always weird kid that on one talk to. I was brilliant and smart but I was more Luna than Ernie. I found myself thinking about a lot of stuff and writing. I wasn’t formal and I wasn’t unsocial either. I was very social just incredibly inappropriate.

    So I really understand were your coming from Amanda :3

  5. As I know we have discussed, I had a lot of very similar experiences, right down to the being accused of being on drugs stuff (and resultant curiosity that might never have happened otherwise). I remember it was not even just other kids, but teachers.

    My ninth grade science teacher called my parents in for a conference at one point where he expressed his concern that I might be on drugs (which I most definitely was not at the time), on the basis of general spaced-out-lookingness and also because I said “weird” things, like “Could rocks potentially be alive as silicon-based life forms?” (Which was actually sort of a “Star Trek” reference!).

    And then I remember babbling about some TV show I’d seen where the plot was about “two realities fighting for the same space” in my Spanish class, and several classmates telling me I “must be on LSD”. I barely even knew anything about drugs at the time but all those comments made me curious, so I ended up embarking on a “research project”, in which I looked up various drugs in every book I could find on the subject, memorized chemical formulas, etc.

    (I even at one point wrote the chemical formula for LSD on a science test when asked for an example of an “organic compound”!)

    It even got to the point where, sometimes, if people would tell me “hey Anne, you’re tripping!” I would not disabuse them of the notion. (I am seriously lucky I never got locked up for stuff like *that*, I realize now.)

    So, yeah, you definitely are not the only person to have had that kind of thing happen. I bet it happens more frequently than people realize.

    And as for autistic people actually ending up taking “street drugs”, and/or doing other things commonly considered acts of “rebellion” (some of which may actually be dangerous, others perhaps just kind of ridiculous) I also suspect THAT happens more often than is talked about, but probably moreso to people like we were as adolescents (spacey-looking, sensory-seeking) than to the people who tended more toward the stiff-and-formal demeanor.

    There is a thing that happens often, I think, where certain social groups will adopt us almost like a “pet” or “mascot”. And due to our social naivete and general lack of experience with having people even willing to tolerate our presence, we mistake this for “friendship”.

    I remember several points during adolescence where I ended up sort of hanging around groups of people that were what my parents would definitely consider “a bad influence”. And this had to happen repeatedly before it finally sunk in with me that These People Were Not Actually My Friends.

    Now it seems more apparent what was going on –e.g., the way these people would talk to me at school (or at least let me sit near them), but never really included me outside that environment, the way they were so “fair weather”, the way they would repeat stuff I said and laugh, and then ask me strange questions (I guess to see if they could make me say more “funny” things).

    But for a long time I had this idea that “if people aren’t punching me in the face or calling me ‘ree-tard’, they must like me”. When, just, no.

    As for sensory-seeking stuff…many of my earliest memories involve very strong sensory impressions of things around me, and a lot of activities directed toward experiencing objects, my own body, phenomena in the environment, etc. I remember sitting there pressing on my eyeballs a lot, to see the color swirls that this caused. I would swing on playground swings with my eyes shut, watching the field behind my eyelids change from black to translucent red as I swung in and out of the sunlight.

    I would stare into mirrors in the dark with a flashlight in my mouth. I went around licking shiny objects because I’d discovered that real metal was cold and plastic-painted fake metal was warmer and I felt like I had to figure out which was which.

    I would pull out individual hairs, not in a compulsive fashion (I never got bald spots from it) so I could feel the follicles, and I would also do this kind-of-gross thing where I would make a row of spit bubbles hanging on the hair, expose them to the air long enough for them to get cold, and then lick them back up.

    I would also do things like…stare at lights until the bulb started to look dark, and then I would run around, spinning, chasing the colored after-image.

    All that stuff above was mainly done in elementary school. But by high school I was definitely still doing things like staring into lights (especially strobe lights…I remember people yanking me away from them at school dances, which annoyed me because strobe lights were one of the few reasons I ever attended dances).

    And staring at screen-savers (some very visually interesting ones had just come out around that time).

    And waving my hands and staring at them.

    And (like you) carrying around lots of things. I always wanted to have a backpack with me so I could fit all my stuff in it…stuff that I liked to look at and play with and smell, like this little kids’ leather purse I’d spilled patchouli on.

    I also used to like it when people would randomly give me clove cigarettes, because they smelled good, and I liked to just carry them around and take them out and sniff them (I did try smoking them a few times but was not very good at it, and I can’t stand any kind of smoke these days due to allergies).

    And, I also did some of that…”immersion in chaos” stuff. Like I would go into my room, turn on music, put on a blacklight, and light a whole bunch of sticks of incense at once. I would then lay on the bed — no drugs involved whatsoever — and do the eyeball-pressing thing, or just stare at things until they started to look wobbly, or imagine interesting patterns and play them vividly in my imagination. It was like I was trying to escape overload through creating an excessive amount of it, or something. And also I was just very interested in notions like “what is consciousness? what is awareness?” at the time, so I was trying to do things that would sort of probe the boundaries of these things.

    What stands out to me about this, looking back, is just how internally-directed and internally-sourced it all was. I don’t believe the stereotype that says “autistic people are all self-centered” (with the connotation being that we are incredibly self-involved, in a bad/selfish way), but I do think we can be very…inwardly focused, and also, when we do things, sometimes they get mistaken for things nonautistic people might do because of social influence or drive to achieve a particular kind of status. When for us it’s more perseverative-interest related, or sensory-seeking related.

    In general I was *not* thinking about status or trying to appeal to my immediate peer group when sensory-seeking, or even when dressing up like (my idea of) a hippie…it was sort of a combination of “ooh look, cool interesting patterns and aesthetics here to stim on!” and “historical re-enactment/costuming/immersive research”.

    And then sometimes this would lead to certain social groups taking an interest in me, because of a passing superficial resemblance to their aesthetic — but very rarely to actual friendship. (The few-but-good friends I did actually end up making over the years tended to be sort of on the periphery themselves; e.g., the girl who ended up becoming my best friend sort of defied all social classification, managed to somehow command respect even though she did plenty of “odd” things herself, and was hence not afraid to be seen in public with me.)

  6. I’m fascinated by this post, because although we seem to have taken different trajectories to where we are, I keep thinking that I’ve always been seen, treated, and passed off as weird, despite my (formerly) sterling NT passing skills. I couldn’t quite put my finger on why I’ve always been seen as weird until I read the part about the other kids in mental institutions shunning you or actively doing you harm. I thought, “I just don’t get that. Why would someone shun you or do you harm?” That’s the part of me that’s very, very weird from the point of view of most people. I do not understand these small, pointed, personal evils. I know that I have all the same inclinations as other people, and I have lots of flaws and things that make me petty, but I don’t have that kind of cruelty. In fact, in any room, I have radar that goes straight to the person who seems the most unusual. If I don’t go over to that person, it’s only my own insecurity, my fear of doing or saying the wrong thing. It has nothing to do with wanting to stay away from the unusual person. I want like crazy to be right next to him/her.

    That has always made me a target. And it has always made me “other”. And that’s becoming more and more all right all the time.

  7. One such instance (shunning/harm) I remember vividly was during the stay when my autism diagnosis was finalized. I was walked into the bedroom by a staff person to introduce me to my four roommates. They had been doing something but immediately stopped cold and went hostile the moment they saw me. I got walked out again. And… the staff person went away from me for awhile. And came back saying “We can’t put Amanda in that room!”

    I guess in the few minutes I’d been out by the nurse’s station, the other girls had booby trapped my bed in some thoroughly nasty way. It involved water bottles and some kind of contraption I was never clear on quite what. Being an institution, they put me in that room, while my roommates explained to me very frankly that they hated me on first sight and didn’t want me there.

    At a residential facility that had animals, a bunch of kids pretended to have killed the cat with a lighter just to watch me scream at them. They burned their hair to make it smell like burning fur. Then after I came out of my room they sat in a circle around my door and told me “When a cat dies, an elf [me] dies next!” They thought things like that were great fun. They also liked tormenting my roommate because she supposedly had paranoid delusions and if she reported what the other kids were doing they’d say she was just paranoid and that they’d really done something innocent. They also (I heard them planning this, so it wasn’t real) got the best staff person in the place fired through a combination of skillfully placed racism and insinuations that he was a child molester (they didn’t like him because he treated me fairly — the night they threatened to kill me he even drove me to a different house owned by the same company so they wouldn’t be able to do anything to me).

    Then there were a couple boys who used to shout things at me through the wall to convince me I was hallucinating.

    Other kids weren’t as overtly nasty, but made absolutely clear they wanted nothing to do with me. If I happened to be around, they’d go somewhere else. That kind of thing.

    Then on the occasion someone did want to befriend me, staff generally did anything in their power to split us up. This really sadistic psychologist used to tell me that nobody would ever want to be my friend unless they were locked up with me like this and forced to have a limited number to choose from. And this one girl who was always talking to me and trying to get a response, kept being told to “mind her own business”.

    And that’s just the more psychological kind of bullying.

    Eek, sorry for the litany. I got started and didn’t see how much I’d written. But yeah apparently being in places with theoretically more neuro-atypical people doesn’t mean being accepted. Although these were mostly people with conditions that didn’t make them all that different from usual socially. And it’s disturbing that “usual” includes that level of cruelty.

  8. Amanda, no need to apologize for speaking the truth. How else will anyone know what happens to people in this life? It’s a triumph that you’ve survived, but to paint, write, make music, advocate for yourself and others…not too bad at all, woman, and you’re still young. :-)

  9. Oh and some clarifications re. my prior/long comment: I do not mean to suggest that autistics are incapable of being status-conscious, or that we don’t ever do things deliberately to seek out peer interactions.

    Rather, I mean that sometimes that the things we DO do for the sake of trying to relate often aren’t recognized as such, while the things we just do because we find them interesting and/or sensory-stimulating get taken as having certain kinds of social intent behind them that they don’t.

    Oh, and also, re. the stiff/formal thing: I think I sort of tend to go back and forth between that and the more sensory-seeking thing, depending on the situation. At least it seems that way, based on the fact that half the people who met me growing up called me “ree-tard” (or accused me of being on drugs), while the other half called me a “know-it-all” and demanded to know why I used “dictionary” words and not typical slang.

  10. I am too low on spoons to read all the comments but I was unaware that all the tactile things, the tree branch thing (I did skim the comments), the spinning and dancing, the humming… I thought that was something other than Autism for so long. Just as I am barely starting to realize I never passed for normal.

    The only people who were “friends” wanted something from me. They would never be seen in public with me if they could. The one sleep over I had ended because I was “scary.” I too had the one bed room in the institutions. I just thought I was special as a kid and was relieved to not have to share my space with the others who may hurt me while I slept.

    I wonder why people are so damned ignorant. I wonder why they choose this. I wonder why instead of realizing I just wanted to be left alone I had to be tormented or you did just for existing.

  11. Sensory experiences: I am remembering taking you to I believe it was a state fair that had carnival type rides. You were absolutely mesmerized by one ride which you wanted to go on over and over again. I remember it as some round type of device and I think once inside everyone was spun but I couldn’t see inside as they locked the door. It effected you in a very profound way and you would emerge smiling and seemingly trying to decipher it’s effect on your body….and did not want to leave. Other children would ride on it one time and be off to something else. you just wanted to stay there and get on it again and again. I think you would have taken that ride home with you if you could!

  12. @AnneC: I can very much associate with the comment about alternating between the stiff/formal and the sensory-seeking modes; that sounds a lot like my experience. There are times when I do seem fairly normal, at least in a geeky sort of way– and then there are other times, particularly when I’m feeling really ‘stimmy’, that I’ve been mistaken for being high on something. And I have so totally stared at screensavers and other shiny things for the sensory input.

    I can also associate very much with the fairweather friends thing. Quite a few of my ‘friends’, even up through high school, were just taking advantage of me and/or trying to bait me. (In fact, one of the instances of psychological bullying in high school– when some possessions were stolen from me while I had my back turned– were by a group of several of these people I mistook for friends.) I finally did hook up with a true set of friends late in high school, and really gained a group of friends in college who accepted me for who I was. But even now, I find that I’m a bit on the defensive when it comes to meeting new friends, because so many experiences have soured me in the past.

    @Amanda’s mom: Is the ride you’re talking about “Gravitron” a.k.a. “Starship”? (Here’s Wikipedia’s article on it, if that might help ring the metaphorical bell.) It sounds sort of like that from the description, particularly with the combination of it being a spinny ride and having a closing door so that you were unable to see inside. It’s definitely an interesting sensation!

  13. [Posting this a second time in case the Wikipedia link caused it to get caught in the spam trap.]

    @AnneC: I can very much associate with the comment about alternating between the stiff/formal and the sensory-seeking modes; that sounds a lot like my experience. There are times when I do seem fairly normal, at least in a geeky sort of way– and then there are other times, particularly when I’m feeling really ‘stimmy’, that I’ve been mistaken for being high on something. And I have so totally stared at screensavers and other shiny things for the sensory input.

    I can also associate very much with the fairweather friends thing. Quite a few of my ‘friends’, even up through high school, were just taking advantage of me and/or trying to bait me. (In fact, one of the instances of psychological bullying in high school– when some possessions were stolen from me while I had my back turned– were by a group of several of these people I mistook for friends.) I finally did hook up with a true set of friends late in high school, and really gained a group of friends in college who accepted me for who I was. But even now, I find that I’m a bit on the defensive when it comes to meeting new friends, because so many experiences have soured me in the past.

    @Amanda’s mom: Is the ride you’re talking about “Gravitron” a.k.a. “Starship”? It sounds sort of like that from the description, particularly with the combination of it being a spinny ride and having a closing door so that you were unable to see inside. It’s definitely an interesting sensation!

  14. As far as These People Are Not My Friends, I think I began to notice that once I (a) got closer to my best friend, and (b) made a second friend in adulthood.

    In fact I think it was the second one who did it. I never called my best friend a friend for the longest time. I called her (out loud) “The Exception”. As in my relationship to her was completely unlike any other human relationship I had and it took me about six or seven years of knowing her before I understood this was friendship. And that should say a lot right there.

    One of my “friends” used to make really judgemental comments in a gleeful, aren’t-I-clever sort of manner. Actually at least two of them did that. But what I remember is one of them saying things like “I think I know why you put earrings in your hair. It’s for attention.” Or when I fell over and got my hair in my face, and totally without thinking just pushed the hair out of my eyes. And she broke into this weird sing-song and said “You-parted-it innnnnn the midddddle, liiiiiiiiiike a hipppppppie.” And then laughed. And she was always making that kind of comment, as if the way I dressed or dealt with hair or interacted with things around me was this massive joke that she was in on and I wasn’t (or really she treated me like I only pretended to not be doing whatever she insisted I was doing).

    Honestly I don’t understand why I viewed this as a friendship. I mean today I let my friends razz me about things but this was different. There was no consent, just my neverending passivity. And it wasn’t meant to be all in fun, there was a cruel edge to it. And she would just announce these “observations” randomly. I always felt uncomfortable but I don’t ever remember thinking this isn’t how a friend behaves.

    There were also a group of kids who liked to stand in circles around me and sing loud Pink Floyd songs to watch me lie on the ground and squirm. I remember a kid who called himself my friend joined in once. And I was again incredibly uncomfortable but it didn’t occur to me that friends don’t do this either. Same when a taxi driver did some really reckless stuff that scared the crap out of me, and then said to the boys I was with “I used to do this to a retarded girl whofreaked out too.” That same boy laughed heartily and I got the same uncomfortable feeling I’d gotten when he joined in the singing.

    What I really didn’t realize was a bad sign though came when I started meeting other autistic people online. Many of them had more in common with me than anyone I’d ever met. Not like the level AnneC has stuff in common with me but still more than anyone else I knew.

    And my reaction at first was not “oh cool”. My reaction was (not a real name) “Aaron and his friends are playing an elaborate trick on me. They’re sitting there laughing at me I bet.” Even hearing people on the phone didn’t convince me, I figured it was just one of their friends I’d never met before. And the tricks I had known them to play were fully within the realm that this was plausible.

    Apparently it was that more than anything, my constant fear of my friends, that led my real friends to figure out my “friends” were bullies. But it took me a lot longer.

    What finally did it for me was around my two real friends I was always waiting for them to say mean things to me or play tricks or other things and it never happened. And once I realized I dropped everyone fast. But it took real friends to show me by example what friends treat each other like.

  15. I remember mostly suppressing (and I still do because it’s become like an instinct) the stuff like spinning and climbing and playing with stuff and looking at patterns. I’m mostly stiff-like, I guess.

    I used to press my fingers on my eyeballs to see the patterns and colours it creates. Then fear kicked in and now I can’t do it without a really horrible image of something happening to my eyes popping up and I don’t know if I should describe it more specifically.
    I also liked looking at a specific kind of woven fabric, where the strands are very thick and it’s kind of roughly woven, for the optical illusion it can create. I’d let it be for a while, then poke my finger into it to make it pop back to ‘real’, then do it all over again.

    I felt safe enough to do the sensory stuff at home, but I could and did suppress it outside (mostly). The few times I didn’t, I did get called names that indicate ‘low intelligence’ like retard (but not that one because we don’t have it here). And people do stuff like wave things in your face to get your attention too.

    I’m pretty good at making the table look like the table, if you know what I mean by that, if the environment is familiar and I switch on a certain mindset. This is what I talked about somewhere else, where I create expectations too, and end up having meltdowns more often, but having an easier time navigating and such before. I can not do that, but then I have more trouble distinguishing what’s what, and everything seems entirely alienating the whole time, which doesn’t necessarily scare me, but I won’t be able to hear or understand people talking to me very well, or know what to do or where to go, etc. I tried to describe this feeling to my mom once (I thought she was the most likely to get it), but I couldn’t. I hope she got it because she’s experienced it too, but I’m not sure she has. It’s not really a feeling either, more of a state.
    Some things also make me feel that way until I figure out the what of them. Like music (and music videos).

  16. We were never able to fit into the nerd stereotype either, no matter how hard we tried. I know that when we were in gifted education, there were plenty of other kids who didn’t fit it– the ones who did actually seemed to be in the minority– and, yeah, we saw a lot of identical behaviors between the kids we knew who were labeled gifted, and other kids we knew who were given “behavioral problem” labels and put in special ed or institutions.

    But yeah, being “too weird” even by “weird” standards, that happened a lot. (There were good and bad ways to be weird, and the “good” way seemed to go along with having a certain kind of charisma that we never did– you had to make people laugh, but not laugh at you, and not make them go “what the hell is she doing?” either.) There were other times when we kind of seemed to be able to disappear (not literally, more like just not being noticed), and I’m not sure how we did it, although Bev wrote about something that sounded similar here.

    Then again, it might also have been that we had this tendency to assume that if we weren’t being overtly bullied at a given time, it meant people didn’t notice us– we started to expect that to be the only kind of attention we got, after a point; either that or “friends” who seemed to want to use us for something. But we were also often being covertly bullied and would go a long time without realizing it, sometimes literally years before the pieces assembled in our head and we realized what had been going on. It turned out that at both of the high schools we went to, there were all these rumors going around about us, some of which were extremely nasty, that we were mostly unaware of. There were probably more we never knew about, besides the ones we were clued in to by other people telling us about them. At our second high school, there seemed to have been this… thing, I’m not sure how organized it was, where several students (we don’t know how many of them there were) were trying to put someone up to dating and possibly raping us. We didn’t realize at the time there was anything like that going on, just weird, unexplainable patterns of boys we didn’t even know suddenly acting in certain ways towards us, and people laughing nastily and whispering.

    I know that one problem we had, growing up, was that we’d frequently do certain things without thinking about it or even realizing consciously we were doing thrm. Some of them were more like tics, but others, like sniffing and chewing things, just seemed to happen. Our body just moved through the world and did things in response to what we came in contact with, and while we were certainly aware of other people’s presences, we often wouldn’t consciously think about the fact that we were doing them until we got in trouble for it or someone made fun of it.

    For instance, in childhood we’d get these very painful canker sores in our mouth. We don’t get them as often nowadays and they aren’t as painful, but back then, they were frequent and painful and we were often barely able to eat when we had them. We couldn’t describe them in words to anyone else, though. But when we did have them, sometimes we’d move our lips and mouth around in ways that would scrape them against our teeth or gums, which obviously hurt, but sometimes pain in a specific spot, that we could cause ourselves, was a sensory focus when everything else was confusing. Anyway, our third-grade teacher (who seemed to hate us and was verbally and physically abusive to us) once told our parents that one of the reasons she yelled at us so much was because we were “disrespectful” and that we “sat in class and made faces at her.” Which we… finally figured out referred to the canker sore thing, but until we realized she’d noticed us doing it, we hadn’t consciously been aware of the fact that we were doing it.

    We used to bite the back of our hand around that same time, too, partly because we were fascinated by the marks our teeth left in the skin. One girl saw us doing it in the hall at school one day and said “Doesn’t that hurt?”, like she was really shocked.

    And we got the same response about pulling out our hair later, in high school. One of the rumors that we mentioned earlier, that we found out when we overheard a freshman boy in our art class (when we were a senior– apparently the entire school knew about this) saying it to someone, was that we “picked lice out of [our] hair and ate them.” We had a lot of habits related to our hair in general, including just running individual strands through our fingers, holding strands next to our ears and running them between fingers to hear them make crinkly noises, pulling the follicles off the ends and rolling them between our fingers, and biting off the tips of the hairs, especially if they had frayed ends. The last one was probably where people came up with the “eating lice” rumor. (Admittedly, we still do many of those things, but we try to only do them at home now.)

    …a lot of this is embarassing to talk about because the memories are so covered over with shame, and everyone congratulating us on “improving” and “becoming more normal” when we were able to make ourselves stop doing certain things (while internally we felt worse and worse). One therapist in particular had this amazing ability to attribute nearly every single autistic trait we showed or described to the effects of anxiety, trauma, or low self-esteem. Had been drafting a reply to this post about that, actually. We could make a whole list of stuff we did sort of like yours, but it gets embarassing quickly. Not that we think there’s anything actually intrinsically shameful about any of it, but you get shamed about it– we sometimes think parts of it are connected to general shaming and silencing about bodies and bodily functions in this culture.

  17. Pingback: “Buried my heart at the Holocausts” – Blackfire « Urocyon's Meanderings

  18. I am not autistic, but have OCD. As a kid, I thought I was hiding my symptoms pretty well, but relatives later told me “you were so weird!”

    Well, thanks for all the help with my disorder, guys! Great column.

  19. “A woman I know has muscular dystrophy and when she began hanging onto the walls for balance, people explained it away as attention seeking or anxiety induced.”

    I’ve gotten accused of stuff like that before…like faking my disability just to get attention. People think just because I can walk unaided yet choose to use various mobility aids for different reasons (balance, fatigue, etc.) that I must be exaggerating the effects of my CP or just plain making it all up.

    By the way, Amanda, I’ve been a huge fan of your blog for years now, but I think this is the first time I’ve posted a comment. So…hi, from one blogger to another!

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  21. I actually probably was diagnosed with something as a child, I don’t know what, my parents not being forthcoming about this with me. I’ve asked about the special classes and the psychologists who talked to me at school and got nothing.

    I was not stiff as a child, nor am I now. I am the opposite. I wrote about this once, saying that I made friends with things and that’s the best of putting it I think.

    I was obviously odd. I just grew up in an area where the negative attention I got for my behavior, the psychologist visits, and the special classes were all that happened.

    I did, and still do, some things that feel good to me that aren’t acceptable sometimes. I sniff things. I know many people, cats, dogs, places, and things by their smell. I pick up things to smell them, especially if I’m surrounded by smells I don’t like. I’ve done a lot of things with my mouth, I like putting things in mouth and chew on my clothing without noticing it. I also tongue bits of food out of my tonsil cavities and my teeth and take them out to look and sniff. There are other things too, but I’d be making a very long comment detailing the things I’ve caught myself doing that are definitely not acceptable for twenty-seven year olds.

    I also like to watch different things like dust motes and like to close my eyes and open them fast, especially when I can make after-images.

    I don’t know if I pass or not. I get told by some that I look normal but that’s limited to my boyfriend right now and he is uncomfortable with the idea of having autistic children so I think maybe seeing my autism and acknowledging it might be disturbing.

  22. I stop and stare too. I just get wrapped up in the thoughts and happenings in my mind, freeze, and stare straight ahead. If my gaze just happened to stop on a person (though I’m not really seeing them, if you know what I mean), they would often giggle nervously and move out of my way.

    So many times people have walked up to me and waved their hand in my face, saying, “Wake up, Jen,” or something to that effect. It is so jarring.

    I come off as stiff and formal because it’s how I deal with my social anxiety that comes with being reprimanded, stared at, and bullied for moving weirdly. I would love to laugh, stim, tic, spin, whatever to my heart’s content, but as I’m going to be a healthcare professional, the burden is on me to make patients “feel comfortable,” and that means never moving in a way that looks “weird.”

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