In which I have a weird reaction, surprising exactly no one

If I am going to make a damn fool of myself in front of the autistic people, I am at least going to get something useful out of it. So I've spent the past few days doing what I do best, and going through YouTube for random videos on the subject. Taking into account that they're almost all made by allistic people for other allistic people, and are therefore going to be full of things that are mind-bogglingly wrong, I'm mostly watching the behavior of the genuinely autistic people on camera.

To date, mostly what I have to say is:

Huh.

I am finding it nearly impossible to reconcile the written formal descriptions of autism with the real behavior of people I am told are autistic. Primarily this is because the diagnostic descriptions put really heavy emphasis on the idea that autistics have great difficulty putting things across non-verbally in a way that allistic people can understand, and at no point in any of these videos am I having any trouble figuring out what mood the autistics are in. You people make perfect goddamn sense to me, inasmuch as any human being does. The narrator is droning on about how "When little Johnny started school, he showed little interest in his classmates and preferred to sit in the corner assembling jigsaw puzzles," as if this is some sort of baffling new development in the course of human evolution, and I'm just like, no shit lady, his classmates are boring and random and loud and his jigsaw puzzles are not. They show footage of the kid throwing a tantrum and like nine people hovering over him trying to get it to stop, and one of them tries to explain in this helpless tone that little Johnny often has catastrophic meltdowns over incomprehensible things, and I want to slap them, because this is not some sort of inscrutable new mystery, he is screaming because he wants you to stop fucking standing on him and breathing all his air.

I had to stop watching them, because I was getting unbelievably angry at pretty much everyone in them who wasn't identified as being on the autistic spectrum. The "experts" who talk about interventions and reshaping neural development and re-wiring brains give me the crawling heebie-jeebies. I'm generally in favor of teaching everyone on the planet some explicit basic social skills, because it's better to know stuff and never use it than to need it and have no idea, but the idea of trying to forcibly reshape someone's entire thinking process into something else just because you like it better is... sickening. It sets off all of the WRONG WRONG WRONG WRONG STOP IT STOP IT alarm bells in the back of my head. It is the exact feeling that has, in the past, made me physically interpose myself between a bully and their target and start telling the entire world, very loudly, exactly what I thought about what was going on.

What are apparently classic autistic behaviors don't really register as anything to me. I recognize that they're something I see in a minority of people, but they don't twig as illness or wrongness or dangerous unpredictability. Honestly, unless someone was displaying really obvious screenwriter-reading-a-textbook stereotypical behavior, like delivering a three-hour monotonic dissertation on trains while rocking and hand-flapping and not making eye contact, it would probably not occur to me that anything at all weird was going on. I'd pick up on the behaviors, probably have the ineffable sense that they were all linked to the same ultimate root cause somehow, and adapt as well as I could so that we could continue communicating, but it would really never cross my mind that it was some sort of officially-recognized Thing that by normal-person standards should be weirding me out. "Distressed autistic kid" reads as "distressed kid" to me, and "not looking at me" is not equivalent to "not listening to me at all".

I actually have this problem a lot. I keep a sort of reference file full of informal archetypes in the back of my head. It helps me make quick, general guesses about how people will behave before I've gotten to observe them long enough to make more specific guesses about how and why they do things. More than once I've sussed out someone's behavior patterns and dealt with them perfectly well for quite a while before they make some comment and I realize something like, ahahahaha, you're bipolar. Whoosh! My awareness of how they act doesn't always connect up with what other people call it, or even that other people have a name. Apparently, at some point I picked up an autistic archetype without realizing it and just filed it away as Reasonably Sane Human Personality #982550137 and now I completely fail to peg it as anything at all out of the ordinary.

Also interestingly, and rather more disconcertingly, I may not be as far off the autism spectrum as I thought. I'm definitively knocked out of a diagnosis for lacking the sociocommunicative difficulties -- I communicate the fuck out of everything; you may have noticed -- but I have kind of the 30-day freeware trial versions of almost all of the sensory brain-wacky and most of the non-linguistic thought-wacky. The autistic people will understand, to a precision of four or five decimal places, exactly how I can hate having drawing charcoal on my hands to the extent that I once told an art teacher I would fail her class before I did that assignment, and fucking well meant it; why I keep the volume on the TV set to like 9 when everyone else in the house cranks it up to 30; and how I can hear CRT deflection whine and rat distress signals but be completely unable to make heads or tails out of anything that comes from a walkie-talkie. I also have a tendency to go on research binges whenever I find something that stabs me squarely in the thinky-parts -- it goes on for weeks or months, which is too long for a state of hyperfocus, but whatever it is becomes the default screen-saver for my brain whenever I have nothing else in front of me, and I drive other people completely gazongas because if they let me, I'll talk about nothing else until it dies down again.

[Edit: I went and found one of those quasi-official autism spectrum test things. Average score for the control group was 16.4; average score for autistic people was 32. I got 24. As near as I can piece together, on every single question that was not 'are you comfortable with your level of social competence around random ordinary people', I whack hard against the autistic end of the scale. The only thing keeping me out of the ASD range is that I grok other humans in their native habitat. I say again: Huh.]

Comments

  1. I really like your write-up and I find myself coming back to read your blog especially for posts like this one.
    I'm still not sure myself where exactly I fall on the spectrum (though the test says 29?, figures) but your description resembles my experience in some ways, which is why I wanted to comment.
    I've been the "weird one" pretty much since pre-school. Up until puberty I really was oblivious to all these unspoken social rules (lots of fun that was for me) and I basically had to teach this stuff myself starting when I was about 14/15. At the same time I think I intuited a lot when I was a kid, but I couldn't put it in context until much later. And yes, always the explaining - I can be in the middle of an emotional breakdown and tell you exactly what is going on, where it comes from in terms of childhood fuck-ups and calmly seek out whatever I need at that point. Others tend to read that as cool-hearted or something, but I consider it to be very helpful.
    ---------
    Regarding the test I was wondering what you thought of the questions - I think several just pick up on my very strong introvert tendencies, but perhaps there is an overlap. I do really abhor questions like the first one b/c it's really imprecise - whether I want to do things depends heavily on the amount of spoons I have (and if I have time to mentally prepare myself), the kind of activity we are talking about and a couple of other things. Of course, I've learned now how to interpret a question like that, but I always get the feeling that I'm somehow cheating b/c I can already see where they are going with this and what kind of answer they expect.
    So, yeah, I'd be curious to know what you made of those questions/the test itself.

    Curious reader

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    1. The ability to explain myself coherently even when I'm a sniveling, shaking, sobbing train-wreck of a person really weirds out mental-health personnel. They never quite know what to make of me. I think they can't decide if I just work that strangely or if I'm really bad at faking these things until I actually start talking, and after a few minutes of explanations they get distracted by wondering how it is that I'm still standing upright and getting myself to the ER under my own power.

      I've only ever run into one who was not at all disconcerted by the specific way I turn into a total basketcase. He was a nurse on psych rotation at Flagstaff Medical Center -- I got him by accident the second of two times I landed there for panic disorder stuff, and the third time he saw my name on the board and appropriated my case for himself. I was in no condition to ask him at the time, but for a bunch of Sherlock reasons I'm pretty sure he was a combat vet who went into nursing after a medical/PTSD discharge. He stands as the only medical professional I've ever met who not only asked me the kind of questions that indicated comprehension (expecting, and getting, a coherent answer), but gave what I considered an accurate summary of what was going on to the consulting shrink.

      As for the test, the answer is queued up for tonight. Check back after midnight EDT for the post. :)

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    2. Yeah, the faking part - that's what I was trying to get across. Others tend to assume that it can't be that bad (and don't take me seriously) or that I don't experience what I say I'm experiencing (feeling helpless and like I'm falling apart f.e.) b/c I'm still mostly coherent.
      I'm glad to hear you got the help of someone who got it. It is always annoying to have to spend extra spoons in an emotional taxing situation to first get others to listen and then help in a way that is actually helpful (as opposed to suggesting stuff I already know or did myself, thank you very much). I really have to write something to your newest post on introversion as well, though first, sleep.
      I'm looking forward to your answer. Thanks for taking the time!
      Curious reader

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  2. *ack* cool -> cold, of course.
    CR

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  3. I think it was Bruno Bettelheim who first posited the theory of non-nurturing "refrigerator mothers" who turn children autistic with their lack of care. A very sexist shaming theory, and not one I advocate at all. HOWEVER. As a survivor of emotional abuse and someone who touts radical politics on a regular basis, I do have to wonder if there's some collusion between mainstream society's tendency to laud extroverts and pathologize introverts, and to tout the power of children's "unconditional love", to the point where if a child is failing to make their parents feel happy by being bubbly and outgoing enough, they end up in therapy with a potential ASD diagnosis hanging over their heads. I wouldn't put it past even well-meaning but clueless parents, and I would especially suspect narcissistic/borderline parents of doing such. (Not that I'm bitter, not at all, nope...)

    Relatedly, this blogger I follow really made my day when she posted this brief insight into how she resists leaning on her eldest daughter emotionally. Feels kinda sad that I should be so happy to read something that should be commonplace, but there you go: http://bluemilk.wordpress.com/2010/10/15/in-one-so-young/

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    1. P.S. I hope the above was lucid enough to follow, I have come down with the dreaded lurgy for the third time in two months and am attacking it with nearly everything in my cupboard AND medicine cabinet. Being thus stuck at home while I self-medicate and evacuate my sinuses, now seems like a good time to compose an email with all the brain droppings I've been thinking of asking your opinion on, mainly about one actor, one TV show and one podcast in particular.

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    2. I think it probably depends on the specific kind of insanity your NPD/BPD parent evinces. My mother for one was tickled pink at the idea of a kid who was so socially-incompetent as to be dependent forever. She liked the incomprehensibly-smart part, and also liked being the only person in my life I could come to for advice. There was a significant element of "no one could ever love you like I can" involved, which is pretty normal for untreated, unacknowledged BPD. My sister was the one she lived all her social dreams through.

      It took me for fucking ever to get her to acknowledge that I was an independent person capable of making social decisions for my goddamn self. When last I talked to her, she was still treating me like my opinions were terribly naïve and wrong-headed, but she was stalwartly trying to follow my (also naïve and wrong-headed) orders to butt out. Mind you, this was years after I'd accidentally become the Epiphany Fairy online, and they were apparently reading my blog, complete with all the comments calling me insightful and helpful and all that jazz.

      Please don't die of lurgy! Have you tried sending someone out to get you horribly spicy food? I'm pretty sure Kiwis have also discovered the magic of kebabs. I've started sneaking off to the cheap and terrible but very spicy fast-food Indian place in Harvard Square whenever my nose is plugged. The rats, weirdly enough, also respond to my lip plumper (ginger, menthol, cayenne) when they're snurggy, and try to lick it all off when I go to kiss them.

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  4. I recognize a lot of these things you describe here for yourself, and have wondered if I would at all fall on the Autism spectrum. I am definitely not neurotypical, tend to interpret things very literally in conversation to such an extent that I've had serious conflicts at work because I don't do what my supervisor implied but not explicitly told me to do (and good luck convincing someone they didn't actually say that, people tend to have very muddled memories of these things and are always SURE they really did say it).
    I am definitely not intuitive about social rules, but I've found I *can* learn them quite well when I try. My main problem is that they don't make sense to me and many seem pointless, arbitrary or outright dumb, and I have an intense dislike of all such things. So a big chunk of my life I just didn't want to learn because of that. The main way around it I've found is to pretend it's a game and I'm an actor of sorts, and I can play my role just fine and pass as a regular person like that.
    However, the main defining characteristic that people seemed to bring up for Asperger (for example) was having a hard time reading emotional cues/empathizing, and I am actually really good at that. So I don't really know how to square all those things away in a neat package at the end of the day.

    Lastly, just out of curiosity: I tend to connect with people very much intuitively, on an emotional level. I can actually do that really well using text-based communication, but I've noticed that it really throws me off when people withhold their normal emotive cues when writing. I don't really know how I do it, but I'm really quite good at gathering someone's emotional state from their writing if I've known them for any length of time. Anyone else have that issue when your conversation partner goes all withdraw-y on you and doesn't use their normal cues? It totally shuts me down when that happens...

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    1. You write very aspie, for what that's worth. I couldn't say 100%, since there's a good chance that your English, though fluent, is your second or third language -- "Maartje", with doubled a and j as a vowel, suggests you're in/from Holland, Belgium, South Africa, or some certain selected parts of the West Indies.

      Most social rules are, in fact, very stupid. They're important less because of the actual content, and more because knowing the stupid arbitrariness reassures other people that you're interacting in the same social framework they've come to expect. It's the same idea as geeks quoting Monty Python to other geeks -- if the other person can run through the parrot sketch with you, then that means you have common pieces of knowledge on which you can base your interaction.

      The main difference is that most normal people don't think of it as a game, and take the arbitrary things very seriously. It causes problems not just for autistics, but also for people like anthropologists and sociologists, who are prone to ignoring any social rules they dislike if they think it's getting in the way of getting something done. You can get away with transgressing more if you're aware of what you're doing and of what the other person's reaction is likely to be, but it still annoys people to no end.

      Your ability to get emotional cues from theoretically-cue-free writing is actually related quite closely to the skills used in forensic document examination. I keep meaning to write about it, but get distracted. I queue up articles to post once a day, usually at midnight, so if you keep watching I'll eventually finish that draft and it'll go live.

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    2. That's interesting. English is not my native language (I am from Holland! My name is actually Maarten, Maartje is more of a nickname my friends use sometimes) so that may make it harder to answer this, but out of curiosity: what specifically makes my writing seem aspie to you? I'm rather intrigued!

      That makes sense about the rules. It's just frustrating when the arbitrary rules are the opposite of what seems reasonable to do in a given situation. I have a really hard time then convincing myself to do the (to me) unreasonable thing just because some majority somewhere decided that's what they think of as normal.

      The cues-reading ability is something I've slowly perfected over time. I spend a good amount of time on OKCupid to find interesting people to talk to and nowadays I can tell with almost exact certainty whether or not I will like talking to someone just by reading how they write about themselves. People really give away an enormous amount of information in their writing. Both in terms of what they say, how they say it, and the order in which they prioritize things.

      I'll look forward to that post, then!

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    3. Combination of form and content. You obviously don't want to be misunderstood. Most people in that case will say a thing and then blither for a couple of paragraphs narrowing down what they mean. You just make extremely specific pre-narrowed statements. From normal people this kind of specificity means extreme caution -- either they're being very picky about what details they give in an effort to not technically be lying about something, or because they're trying not to let the answer get too personal. Your answers contain the kind of personal detail that this sort of caution normally edits out and no indications of being deceptive/full of spin; ergo, this is the way you normally write, and indicates the kind of logical pre-processing that I normally get out of my aspie friends. QED.

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