Daily Archives: April 11, 2010

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.