Currently viewing the tag: "autism"

The sun that rises
Is the same that sets
The Earth holds both
East and West

It’s been a very, very long time.

In the past five months I’ve been granted a (temporary) permanent residency (no one else seems to think that is nearly as hilarious as I do), started a job playing with blood products all day, thought an awful lot about further schooling, and spent a really ridiculous amount of time on tumblr. My life is being turned inside out at the seams by me for no good reason at all, which feels like a really good reason anyway, and I just ate a lot of jellybeans and regret that choice.

Sometime in early January, the alternative autism criteria got picked up again on tumblr and flooded my life with reminders of how awesome I can be when I’m thinking Big Thoughts About Stuff. I’m not sure what to do with that right this moment, but I feel like there’s at least one PhD in there somewhere.

So Mary Baldwin doesn’t do linguistics. I don’t think it’s anything personal, there just aren’t enough students (and faculty) to support it. One of my only real regrets about that school and who I’ve become because of it is that I couldn’t do linguistics, which I feel kind of like I’ve always been trying to do since I was a kid. The structure of language and the ways that people communicate may be my ultimate, One True Autistic Passion. Other subjects come and go, but language families are forever. Or something. Idioms are hard, man. I toy with lots of things, because I like learning. I do passionately enjoy medical sciences. I’m finding a deep appreciation lately for quantum physics, too. And there will always be part of me that wants to do more geography and modern cartography because, dude, for real. I’ve never been able to figure out what I want to do when I grow up because there are SO MANY THINGS I could do and how the fuck am I supposed to pick one? I want to be a doctor-bookshop owner-silversmith-linguist-novelist-autism researcher-physicist-cartographer.

I am not joking when I complain that I can’t be a polymath these days.

But I always come back to linguistics. I’m particularly interested in linguistics in relation to language acquisition in autism and alternative forms of communication, but only kinda because I can’t just sit and talk about how using “thou” to try to formal up some Early Modern English language shit is 100% wrong because it is the cognate and equivalent of du in German, which spirals into a thing about thorn as a letter vs Norman printers and thus “ye olde,” and surely anyone who speaks another Germanic language could seee this because “has” is conjugated identically for the two things (du hast/thou hast), and, and, and, oxford comma the end.(1) So instead of that I could be doing so much stuff.

Inertia is a bitch. I mean, and also choice paralysis, which, YES. I can’t choose what to do because what if I choose wrong is kind of the definition. Help? Or something? I forgot briefly that this isn’t tumblr, it’s a Real Blog. I don’t know how to end this, so this is it, give or take a footnote.

1. That was the best sentence I have ever written.

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I am not supposed to enjoy fiction.

It’s one of the more common autism tropes, especially for people who are literate, verbal, or both: we don’t like fiction. We don’t engage in imaginative play. We only like things rooted in fact. Enjoying and engaging in fantasy and fiction is an automatic out as far as some researchers and clinicians are concerned. And I do like nonfiction. I will happily consume endless books about nonfiction topics that catch my interest, and I’m interested in a lot of things. Some become focal points, things doctors can indicate to fulfil criteria about obsessive, deep interests, and lots are more fleeting. But none of that precludes me liking fiction, and sometimes it is the fictional things that become those autistic Special Interests that are so loosely defined.

Not only do I like fiction, but I’m not the only one. Both media and real life are full of autistic people enjoying fiction and engaging with it, though often it is in a stereotyped manner: a youngish man who is obsessive about a sci-fi world. While there are plenty of autistic people who do desperately love Star Trek and similar stories, I (and others) prefer a fantasy based narrative. I started with the classic Narnia books and haven’t really looked back. I like fantasy in any medium. Kit and I just finished watching Legend of Korra (SOB) and I’m listening to the Divergent series. This year I’ve consumed dozens of books by half a dozen authors, all set in fictional fantasy worlds, or worlds with fantastic elements (like Terry Pratchett’s Discworld). The Seven Kingdoms/Graceling Realm books by Kristin Cashore occupy a special place at the very top of my obsessive interest list at the moment.

All of this is to make a long-ish segue about how I’m not clear how intense interests are supposed to be a specific hallmark of autism, and how those obsessive interests are a clear way to forming close relationships with other people.

I’ve been talking about fandom on tumblr, and I wanted to talk about it here, too, since I know more people read me here for autism stuff (frankly, I don’t blame you: tumblr is both addictive and terrifying). Fandom, as a concept, negates both the idea that being intensely interested in one specific thing is an exclusively autistic thing, and also provides a really welcoming place where intense interest is a positive trait.

In fandom, it’s okay to like something so much that all you talk about publically is that thing. There are thousands of tumblrs alone that are dedicated to a specific show, book, movie, comic, or performer, many of which are extremely narrow and specific. I follow multiple tumblrs about Lin Bei Fong, a secondary character from Legend of Korra, and there are many more. You can participate how you want: reading and enjoying what others say is as valid as talking, creating visual media is as good as writing stories, and you can alter how you interact based upon your needs each day. Fandom also allows people who may have been isolated to discover they are not alone. As one of the most active members (by far) in two very small fandoms, I would have never been able to critically discuss the books I love, or have found an audience for the fiction I write for them. I would be as isolated as I was before learning about autism, feeling disconnected and unreal, so separated from the people physically close to me that I grew up feeling broken. Fandom allows me to connect to people in ways that are comfortable for me while also encouraging me to expand the way I socialise.

No, not all autistic people will enjoy it. Not every person alive ever enjoys fiction, autistic or not. But by continuing with this really easily falsified belief that autistic people lack imagination or an ability to enjoy fictional worlds, researchers and clinicians are actively harming us, not just by denying who and what we are, but by denying us a social environment that is practically designed for autistic people and our needs.

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There’s been a fair amount of discussion of the new/proposed autism criteria around the web, and particularly on tumblr. I’m glad we’re finally talking about them, since my original opinion on them was that they were fine. Not great, not terrible, probably not going to exclude anyone, and just sort of…meh.

A few people on tumblr have rightfully pointed out that the criteria are actually moving even further away from the lived experience of autism towards useless constructs of what autistic behaviour does/should look like according to allistic researchers. This is hugely problematic, if for no other reason than it’s scientifically unsound. Accordingly, I’ve been thinking about what I would prefer criteria to look like. This is what I have so far. All constructive criticism and commentary is very much welcome, since I think that the diagnostic criteria for autism should be autistic-defined as a broad group–we’re effectively deciding who gets to be in our group with us.

Apologies for the wonky formatting. WordPress was not happy with my beautiful tiered bullets.

A. Differences in perception (at least 3)
1. Sensory defensiveness (ie, complaints or avoidance of any of the following: loud noises or places, bright lights, textures (food or object/clothing), tastes, smells, touch)
2. Sensory seeking (ie, stims or stimming behaviour such as rocking, flapping, finger flicking, hair twirling, spinning objects, etc or actively desiring any of the following: deep pressure or touch, vestibular sensation [swings, spinning in any context, etc], specific smells, tastes, or textures)
3. Auditory processing difficulties
4. Unusual, awkward, or delayed motor skills, or asymmetry between gross and fine motor skills (ie, clumsy but with strong fine motor skills, good gross motor skills with poor hand-writing or table skills)
5. A reduced or lack of conscious awareness and/or use of allistic (not autistic) nonverbal behaviour and communication such as facial expression, gesture, and posture.
This criterion should not exclude persons who have learnt to read or otherwise comprehend nonverbal behaviour by rote learning, particularly adults. Intentional learning to overcome an inherent difficulty in comprehension is supportive of this criterion. It should also not exclude persons who have been taught to use nonverbals to be less visibly different. In such cases, internal report of difficulty should take precedence over apparent behaviour.

B. Differences in cognition (at least 3, one of which must be 1 or 2)
1. Difficulty in beginning or ending (at least 1):
-Perseverative thoughts or behaviours
-Needing prompts (visual, verbal, hand-over-hand, etc) to begin or finish a task
-Difficulties planning complex activities
-Difficulty switching between activities
-Lack of apparent startle response
2. Difficulty in using language (at least 1):
-Problems with pronoun use that are developmentally inappropriate
-A reduced or lack of awareness of tone in self (ie, speaks in a monotone, childish, or otherwise unusual manner) and/or others (ie, does not perceive sarcasm or follow implied prompts, responds to rhetorical statements and questions in earnest)
-A reduced or lack of awareness of volume (ie, speaks too loud or too quietly for the situation)
-No functional language use
-Mutism in some or all situations
3. At least one special interest in a topic that is unusual for any combination of intensity (ie, does not want to learn/talk about anything else, collects all information about the topic) or subject matter (ie, unusual, obscure, or not considered age appropriate). Topics may be age appropriate and/or common (such as a popular television show or book), but the intensity of interest and/or specific behaviour (such as collecting or organising information as the primary focus) should be taken into account.
4. Asymmetry of cognitive skills
5. Talents in pattern recognition, including music, mathematics, specific language structures, puzzles, and art.
6. A tendency to focus on details instead of the broader picture, across contexts.

C. These differences cause impairment and/or distress in at least one context (ie, school, work, home), which may be variable over time.
D. Symptoms should be present in early childhood, but may not be noticable until social demands outpace compensatory skills, at any age

I always mean to blog more than I actually do. So consider this a new year’s list of things I would like to explore, maybe not now, but definitely at some point:

  • learning Auslan. I’d love to work on another language, and Auslan seems like it would have both practical benefits and potential long-term academic benefits.
  • study what research there is for auditory processing issues and autism (see above long-term academic benefits)
  • study what research there is for gender and queerness in autism
  • begin designing a reliable screening tool for autistic adults
  • write more scientific critiques of existing research. This is something I’ve always meant to do and never managed to get around to it. I think the exercise would be good for my brain.
  • write more book reviews. There are a lot of books I read and love, and I never talk about them.

Maybe the solution is to try to blog at least weekly; when I set this goal I usually can keep it for a month or two before forgetting. I’ll just have to try. Consider this more of a note to self than a note to anyone else.

ETA: Additional note to self: link between pvwml and autism or loss of language. Potential neurological marker?

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Well. Maybe a latte instead. I love you, Melbourne coffee.

Melbourne can’t work out if it’s beautiful or the dreariest, coldest fog bank this side of the Pacific. Both make my current job temping at a giant insurance agency somewhat unbearable, as it is either all sparkling sunlight from the roof of Southern Cross catching my attention and begging I go play, or the sort of chill that makes getting up at 6 in the morning intolerable. Despite my protests to myself that I’ve gotten up far earlier for work, it was in a job I enjoyed and valued. This job is sending rejection letters to people who just wanted some massages or glasses or anesthetic for their brain surgery and who, for a host of reasons from filling out the forms wrong to simply not being insured, I must cheerfully and politely deny. Previously, I thought my job in Staunton, working with mentally ill kids who needed hugs, not locked rooms, was the most evil job, but this might actually be worse because it’s dissociated from the pain I know I must be causing.

It turns out that what I thought would have been a good environment for me, a quiet office with cubicles, is utter torture. I have spent much time lamenting the noise levels of previous jobs, and how standing all day hurts my legs and feet, but sitting all day in one spot has me a fidgety, stimmy mess. It’s blissfully quiet, except for the other hundred people typing and sighing and making far more noise than seems reasonable. I could tune out others’ conversations in the bustle of work before, but now they are bright spots in otherwise uninterrupted tedium.

So I need a job on my feet, doing things with my hands, even the same boring thing over and over. Soon, please. It’s getting hard to pass off the stimmy stuff.

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In two and a half weeks, I will get on a plane and cease to live in the US, for permanent as far as we can guess.

When I land, I will be a new person. I will be neatly crafted, all smooth lines and invisible joins, not cobbled together of hurts and fears and sinew like I am now. A clockwork person; a robot made out of human bits of bone.

I will be Eliot, sometimes. I will be trans without being ashamed, or anxious, or both. I will be openly, joyfully queer (and if the immigration stuff goes easily, maybe even poly). I will be proudly autistic, honest about the disabling bits and all the good things. I will be clever and quick and funny and obsessive. I will make friends.

At least, I’m going to try.

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What gives me away, in the end, is that I don’t ask questions.

It has something to do with tone. I’m never clear if I’m being given a small fact or invited to discuss something larger, deeper, more complex and personal. With a handful of people I can usually guess correctly, but for the most part I resort to ignoring these maybe-invitations; I’ve gotten that guess wrong far too many times to try it.

I very much want to know, that isn’t the issue. It’s not that I lack curiosity about the lives and inner workings of the people I am close to–far from it, really. I am desperate for a glimpse into how they work, how we are alike and dissimilar, because I like that sort of thing, that sort of science of thought. But I can’t bring myself to ask, waiting to be offered tidbits of information and never able to complete the follow-up that is required for more.

It comes out of a sense of not being owed knowledge, which I actually think would be rather an improvement for everyone if it was the baseline opinion instead of the reverse. No one should tell me anything about themselves, because their lives are private and what they want to disclose may or may not match up with what I want to know–and their comfort should always be prioritized (and mine, in turn). No one should get to ask me about being queer, being some flavour of trans, being autistic without my express permission. No one should be able to make sexual advances without my permission. My body, and the mind it holds, are mine alone to share as I deem fit.

This isn’t the default, though, so my inability to ask at all the right times is pathologized and made into a symptom instead of the polite respect that it is intended to be. I would love to know. I’m just waiting for permission.

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This post was written for TEACCH and The Autism Angle blog, but I wanted to share it here. I think it came out a bit more articulately than what I’d come up with before.

Middle school was rough. I was thirteen and still liked to dress up and then carefully arrange my dolls. I was obsessed with Buffy the Vampire Slayer, collecting every piece of media I could find that might be vaguely related and stockpiling it (for what, I still don’t know). I had only learned to wear jeans in seventh grade, the fabric harsh and too unyielding to be properly comfortable, but the bullying for my preferred stretch pants was even less comfortable.

I was in eighth grade English when my teacher made an announcement. The school was going to be trying an integration program, with a classroom for artistic students who would be in our elective classes but not the core curriculum ones.

I seethed. How could I not have been invited? I was familiar with semi-integrated education already; I had been invited to go to a separate school for the Very Special Needs academically gifted kids. I was the best artist in my class, for sure! Had I not drawn and redrawn the same picture for most of fourth and fifth grade? That picture was amazing! Every one of the hundreds of copies! How dare they ignore me?

Later I found out the teacher had actually said “autistic.” She was from New England and I’d never heard the word before. It’s funny now.

It’s funny because I am autistic. I’m apparently what they call “high-functioning,” but I don’t like the term very much; the division feels artificial and the inherent value judgement is off-putting. I’m not less autistic, it’s really just that I communicate in a way allistic people seem to understand most of the time.

There are as many ways of being autistic as there are people on the spectrum. Autism is described in the medical model of disability as a series of deficits, things that make us deviations from Regular People, but I don’t think that’s true. Autism is a neurodevelopmental difference, a way of experiencing and thinking about the world that is certainly different, but not inherently bad. The disability part enters into things because the world was not designed by or for us, and as a minority group we are expected to conform to the majority, not the other way around. Autism accounts for the parts of me I dislike–low frustration tolerance, perfectionism, difficulties making friends, my propensity for depression and anxiety, my propensity for lists and em-dashes–and the parts I like a lot–loyalty, determination, artistic talents, a gift for learning, my propensity for lists and em-dashes–because you can’t separate out autism from me. Autism didn’t sneak into my room when I was small and steal me away. It’s just a word to describe how I interact with the world around me. Just a word. I sometimes think autism makes me inherently existentialist.

Being autistic means that I experience the world differently than most people, and not in a solipsistic way. There are sensory overloads, a world too bright and loud and full of textures, touching and grating and soothing. Things other people seem to find effortless, like reading facial expressions and making eye-contact, are difficult or distracting or downright painful. I can spend hours engrossed in reading about a favourite topic, unaware of pressing physical needs like hunger, and I communicate my enthusiasm in hand-flaps and wiggles and relevant echolalic quotes. My particular blend makes learning music by ear effortless and by written sheet music nearly impossible, while I prefer written instructions for academic or job-related things and watch TV with subtitles whenever possible (autism, by which I mean me, definitely has a sense of humour). It can be hard to make friends, but I keep the ones I have close, and love them dearly. I keep a planner without the school or high-powered career to warrant it, lists and schedules and therapy appointments all crammed in together because I invariably will not remember them–but my planner will. I get overwhelmed and scared and ecstatic and furious and many more besides, though I struggle to find the words for them in the moment. Words spill out onto my computer screen even when I can’t sustain a spoken conversation or get lost in the pattern of the wood grain behind my interlocutor.

I was asked to write about what it’s like to be autistic, with the guidelines of the DSM to focus the prose. It’s hard, now, because I don’t think going point by point for all the ways I can be seen as damaged is a wise way to build my identity or to speak of it to strangers. I am not a broken allistic person. I am not a collection of deficits wrapped up in skin. I am autistic and I use that word deliberately in the adjective form.

I am just like you. Only, maybe, not.

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I am still.

When I was six or seven, my mother told me that flapping my hands was Not Okay. It’s something my cousin did, full of exuberance and ADHD, and it was made clear to me that I was Too Smart For That. He was stupid, no one expected much of him, so if he wanted to flap his hands, it was fine. But I was bright, so clever and sharp, and I should not do those things. People would get the wrong idea.

I became still.

I sit like a small animal, surrounded by predators, every muscle tensing and untensing. If only I could go unnoticed! I wait for the threat to pass, and it never does, because it’s a threat built into the foundations of my culture. Sometimes I let myself flap, or bite my nails, or wiggle with joy, but only after I have given up hope of passing, of being overlooked in my stillness. I think this is the outcome of a life of being instructed not to be exemplary in any fashion. Worse, it incapacitates me in my desire to no longer be still. I don’t actually care what anyone thinks of me anymore. I don’t care if they think I’m stupid, or if it annoys them. I want to feel comfortable in my skin.

Instead, I stay still.

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I’ve been reading back over a year, and oh god. I have been a whiny shit. I am so sorry. I promise to stop being such a whiny shit. For real.

I actually did end up writing a really great piece about what it’s like to be autistic for TEACCH, which I will publish here soon, which is what led to me reading stuff I wrote months ago. I probably could have cobbled together something from all of the millions of times I wrote about it previously, but this new piece is good. It’s confrontational and social model-y and I like how my writing voice has evolved in the past year (it means using AND a lot because I want to, mostly, and also comma splices). I almost never remember that there was this one time I was in college and got published in an anthology. Like I can actually write, if I stop being such a shit and just do it.

So that’s going to be my goal: just write, and stop being such a shit. I have a little over seven weeks until I leave(1), and I think it’s incredibly reasonable to suggest I could write a post a week. My intense interest in autism hasn’t really faded, but I no longer feel compelled to write about it exclusively; since being made an Official Autistic, I have felt much more comfortable just being and not having to yell a lot about how autistic I am. I’m very caught up in MBT fandom brain at the moment, but I don’t know that I want to write fiction and I have a tumblr dedicated to fandom thoughts. So I’m not sure what I’m going to write about, just that I think it can happen, and I think it can be excellent.

I wrote once that when I feel brainless, the only cure is to force myself to do something intellectual I enjoy. Greensboro Public Library, nonfiction section, around 360-375 and 616ish, I owe you my brains.

Not in a zombie way.

1. OH GOD OH GOD I haven’t told work yet (I’m planning to give them a month’s notice) and there is so much packing and cleaning all the stuff and I am using this stuff, how am I supposed to also pack it? Shit.