Thoughts on the autistic spectrum

[rockinlibrarian]

 I've been thinking about my place on the Autistic Spectrum a lot this week for some reason, and I've found it's made me suddenly really self-conscious. The problem is that my autistic traits ARE the traits I've always most struggled with, when it comes to self-acceptance-- these are the traits I've always hated myself over. When I got diagnosed with ADHD, it was a relief to my sense of self-acceptance, because look, those traits have a CAUSE! But while I may have been FRUSTRATED with my scatterbrained tendencies, those weren't the traits that made me HATE myself. They just made (and continue to make) me frustrated. See, I guess it's that nobody ever picked on me for those things-- except maybe that I'm late all the time, but that only became a problem in adulthood, and it's easier to not take being picked on to heart when you're an adult.

Whereas it's my struggles to get words out of my mouth, particularly when I really have something to say, that has historically always led to my breakdowns, and to this day the term "crybaby" is one of my worst triggers.

 So okay, right, shouldn't it be a relief to know that this is caused by a genuine disability and not just me being stupid? Just like it was a relief to find out that my scatterbrained tendencies are a genuine disability?

 Apparently not. Maybe it's because I've internalized all the myths and misunderstandings about autism over the years. When my brother was diagnosed with what is now called a spectrum disorder but was then called Pervasive Developmental Disorder-- Not Otherwise Specified, it was all about checklists of symptoms. Since he didn't exactly fit the checklists for Classical Autism or Asperger's Syndrome, but still obviously had a Disorder, they gave him all those letters, PDD-NOS, which totally seemed like a cop-out diagnosis to me. The way they do it nowadays makes so much more sense. Anyway, so back in the 90s when this was the way these things were diagnosed, the literature spoke of "shadow symptoms." It was common for family members especially to share SOME of the symptoms, but not enough to have a "disorder." "This is YOU," my dad pointed out to me, perceptively.

 But, like, I didn't have a DISORDER. I could pass as NORMAL.

 Except that I DID have a disorder, it was called Clinical Depression, and it was caused by the unshakeable sense that I was NOT and never COULD be Normal and I hated myself for it.

 But all those symptom checklists. They just camouflaged that autism is, at its heart, a Communication Disorder. Period. I was always tickled by this thing in one of Jason's favorite animes, Ghost in the Shell--  when these cyborg crimefighters would go off-line so other cyborgs and computer systems couldn't communicate with them through internettish means, they'd call it "going into Autistic Mode." I liked that. Of course! Because it's a communication thing! I mean, these cyborgs didn't go into Autistic Mode so they could start stimming and taking everything literally, it was strictly a term for a communication mode.

 And that's what the autistic Spectrum actually IS. At one end you have people who are completely non-communicative. At the other you have people who can get through life passing as "normal" despite the fact that communication, for them, can be a serious struggle.

All the other stuff is just extra. Things that are COMMON among people with autism, but they don't DEFINE autism. So, like, I don't stim or make random noises. I can in fact carry on a conversation, though I might struggle for words, and not look at the people I'm talking to much, and it's not apparent how much WORK I'm putting into the process at the time. Basically all my social anxieties stem from my trouble verbalizing-- I've noticed this. It's not about being afraid of an audience or of sharing my real thoughts, it just all comes down to the process of TALKING. It's difficult. I hate having to deal with it. If it's a topic I'm interested in, YAY! I can do it, but if it's, God forbid, SMALL TALK?! I just smile, make noncommittal responses, and think "GO AWAY, PLEASE GO AWAY, YOU CAN STOP TRYING TO TALK TO ME ANY TIME NOW, GO AWAY" at the very nice person I am on the surface being very nice to.*

So what I'm saying is, YES, I by most basic definition have an Autistic Spectrum Disorder, even if I'm better off at passing than a lot of people are.

But, in the first place, the pervasiveness of the myths and misunderstandings make it hard to claim, to identify with. "Autistic people lack a sense of humor," is one very clear myth. We may have QUIRKY senses of humor. We may not react to jokes in totally expected ways, and we may suck at delivery of jokes (eh, communication disorder, remember?), but dang if most of the people I know on the high-functioning end of the spectrum at least don't regularly crack me up. In this family we even have a phrase: "That was an Uncle Danny joke." My brother's sense of humor is just THAT APPARENT.

"Autistic people don't understand metaphor." True, MANY autistic people don't understand metaphor. But it's not an integral part of the concept of autism. I am very INTO metaphor, myself, thank you very much. I tend to look at EVERYTHING metaphorically, sometimes.

"Autistic people lack empathy." No. Straight up myth. That is in fact the definition of a sociopath, not of an autistic person (not that that's mutually exclusive). An autistic person may have (and probably DOES have) trouble EXPRESSING empathy, or behaving tactfully in situations other people expect empathy to have some control over, like expressing sympathy when someone else is hurting. I for one have entirely too MUCH empathy. There's that part in Meet the Austins when Vicky's feeling awkward about the right way to behave about all the funeral stuff going on in the house and she's like "Does this mean I don't care, I'm unloving?" and her uncle's like, "No, actually, I think you have too MUCH empathy. You don't need to show sympathy, you're just EXPERIENCING it." Or something like that. At any rate I identified with it. Madeleine L'Engle has more than a few major characters who might in fact be on the spectrum, if you think about it. I wonder if she was.

 When I was looking up "autism in girls" the other day, just because I was thinking about it so much and wanted to see what the latest thinking was, Google gives "related searches" suggestions and one of them was even, "Can people with Asperger's feel love?" OH MY GOSH, SERIOUSLY. Again this is pervasive myth, related to the one about empathy I suppose. Just because we might be bad about EXPRESSING it. Just because we do have higher instances of asexuality and demisexuality (me!) than the average population and people often confuse that sort of thing with "love"! IT'S A COMMUNICATION DISORDER. FULL STOP. Being unable to COMMUNICATE the extent of ones full inner life does not mean that the full inner life doesn't EXIST.

 But in the SECOND place, I DO have certain secondary symptoms, myself. And thinking about them reminds me of the SHAME they've always brought me. Very very sensitive to noise. When I was a kid I FREQUENTLY had episodes where I'd cover my ears and scream because of prolonged loud noise that was usually caused by other kids and they'd all give me that "what is YOUR problem?" look and I'd feel like a total party-pooper and nobody could ever like me again. Nowadays when you see a kid do that, and you're a grownup, you're just like, "ah, that kid is having a bit of an autistic meltdown!" but back in the day I think the adults just thought I was overreacting, too, and anyway, it was the kids' reactions that bothered me most. Because I WANTED to have friends. I WANTED to fit in. And I kept doing idiotic things like having meltdowns and ruining it.

This is the picture Maddie has set as my computer log-in screen background right now (she has a thing for changing the backgrounds on all my electronics on whims). It's a fairly recent picture, and to Maddie I'm sure it's just a super-cute picture of her parents. Probably is to you, too. But I keep looking at my eyes and mouth and feeling hyper-aware of their BLANKNESS. It's a...totally autistic expression, to be perfectly frank. When I look at myself in the mirror, I usually make a face. Not in an, "ew, look at that ugly thing," way, I mean I turn on an expression.** I do a little act for myself. I mean, I'm good at making expressions. But I do them on PURPOSE. I'm used to seeing myself, in the mirror, doing one of these acts. But in real life, when I'm just caught candidly-- or I'm not really FEELING a photo shoot and try to fake a "nice smile"-- you can see my typical expression is just this...blankness. And I hate it. "I look like a weirdo," I think. Stupid thoughts like "Martin Freeman could NEVER fall in love with someone who looks like that" flit through my head. Even though it's not like people HAVEN'T fallen in love with me before, "weird" lack-of-expressions and all. But I have a deep-seeded self-consciousness over it. I look at myself surrounded by pictures of other people and just think "Why don't I look like everybody else? I just DON'T FIT." Maddie looks exactly like me and I think she's one of the most beautiful people in the world, but (on one hand) I'm incredibly biased, and (on the other hand) SHE'S NEVER expressionless.

So anyway, all the thinking I've been doing on this this week keeps reminding me of all these things about myself I've always been REALLY SENSITIVE about. So they're all just typical autistic things? So what. That just means they're even more PART of me, out of my control. I can't pretend they don't actually exist, that I really am "normal."

And yet on the other hand... kids and I just finished reading Order of the Phoenix. A few months ago on Twitter I saw someone thank J.K. Rowling for giving autistic girls some positive representation through Luna Lovegood. I have always identified with Luna. When I first read Order of the Phoenix I was all "OMG I HAVE FINALLY ARRIVED AT HOGWARTS." I mean I'd identified with Hermione before, to an extent, but this was DIFFERENT. This was seeing myself from the OUTSIDE, in a book. Someone NOT QUITE THERE, like me, in a fantasy adventure story. I'd never thought of Luna as autistic, but this time through, with the idea planted in my head from that tweet, it was OBVIOUS. The way she looked past people instead of at them when she talked. Her unexpected emotional (or lack thereof) reactions. The way she always looked like she just wandered into wherever she was accidentally.

 But I LOVE Luna. She is one of my favorite fictional characters of ALL TIME. I love her FOR her weirdness. So if I can love her for the very things I hate about myself-- why can't I return myself the favor?

 

 *Side note: this just reminds me of how many book vendors that call me at the library apparently have this script they use that begins with small talk, "So, what are your plans for the weekend?" "So, what's the weather like in [sound of rustling paper] Western Pennsylvania today!" Uh...um, let's talk about books, that IS why you called me, isn't it? Also, I don't have any budget to buy from you at this time, but at least can we at least skip ahead to the important stuff?

**I read oh what was it called, a Frances Hardinge book last year-- OH A Face Like Glass obviously. Everyone in that society LEARNED their expressions, used them purposely, which is why the main character whose expressions came naturally shocked everyone there. It struck me as very metaphoric for this autistic symptom. Eventually it turns out (minor thematic spoiler) that this society IS what people aboveground call fairy land, AND in actual history it's suspected that many of the children people suspected of being fairy changelings were in fact autistic, SO.... Yeah, I don't know what, so. But I have always felt like a changeling, too, for that matter.