The Alternate Lexicon
Currently viewing the tag: "asperger’s"
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
-Catatonia
-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
-Echolalia
-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
Tagged with: asperger's • autism • disability studies • dsm • neurocognitive science • neurodiversity • research
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.
There is a kitten next door. He’s maybe 8 weeks old, and it’s pouring rain. He turned up sometime yesterday and has been crying nonstop since then. He does not have food, water, or appropriate shelter. He’s a little ball of fluff that’s been soaked down with the rain. He comes to the fence if I speak to him.
Prosper is in quarantine. He has a little cell about 4′ by 8′, which is actually not too terrible at all, and he’s finally started to eat (according to the quarantine staff, he’s “picky”–what, I precisely, does it take for a cat in that situation to be called picky? I can’t think on it too much or it makes me scared.). He let both Kit and I pet him and tried to chomp, a sure sign he’s feeling more like himself.
I can still hear that kitten.
I am on the edge of tears, worried about that kitten and about my big kitten, and how scared they both must be, feeling abandoned and hungry. I can’t focus on anything else, filled up with worry about a kitten that theoretically belongs to the house next door (though they’re doing such a shit job taking care of him, I’ll call the animal shelter to report them for animal cruelty if they don’t take him inside as soon as they get home–who the fuck leaves an 8 week old kitten outside while they’re gone all day?!). I think my empathy is working just fine.
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.
Tagged with: ali • asperger's • autism • friends • frustrations • gender • melbourne • moving • neurodiversity
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.
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.
Tagged with: ableism • ali • asperger's • autism • disablism • meta • neurodiversity • therapy • utter pedantry
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.
Tagged with: ableism • ali • asperger's • autism • depression • disablism • frustrations • gender • neurodiversity
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.
Tagged with: ali • AND THEN BAD GRAMMAR HAPPENED • asperger's • autism • frustrations • kit • melbourne • meta • monster blood tattoo • moving • work
Etsy business is super stagnant (like nothing in over a month stagnant). I have some new pieces to list, but I’m honestly no longer sure what’s good and what isn’t. If you kind visitors would please head over to my shop, take a look around, and then tell me what I’m doing wrong, I’d be much obliged.
That aside, my fandom tumblrs are doing super awesome excitingly well. Yes. I started a Kate-themed tumblr, the obviously and fabulously named Fuck Yeah, Kate Miller-Heidke (I realized I couldn’t change the terrible layout of the other Kate tumblr, and also I am pretty sure I am the most awesomest Kate fan and therefore I should be in charge), and the Branden Rose tumblr is also thriving (aside from the problem of very little content in a very little fandom).
That aside, life appears to be happening with or without my consent, so I am trying to keep up and not get overwhelmed too much. I am currently supposed to be thinking about how I want to write a Statement About Autism for other adults and teens who have just been diagnosed, but all I have right now is: look, it’s going to be okay. It turns out that autism probably accounts for all the things you like AND dislike about yourself, because it isn’t something you should think of as a disorder you can separate from you, but rather a way of experiencing and thinking about the world. Adjusting to the idea that you have a developmental disability may be rough, but giving yourself permission to need the things you need to get by is the most radical form of self-care available to you as a person. You may have been forbidden to rock, or flap, or nail-bite, or echo, or pursue something you love down to your spleen because they make you look like some retarded autistic kid, but if any of those things make you better able to cope with a world not designed for you or by anyone like you, then you should probably do them. And also, you ARE that retarded autistic kid. Sorry. You’re pretty fabulous.
Which is not super inspiring.
Tagged with: ableism • ali • asperger's • autism • disablism • kate! • meta • monster blood tattoo • neurodiversity
Hi, Dylan. Google analytics tells me someone in Charlottesville spent a while on here late last week. Then you tried to friend me on facebook. I have a hunch those things are connected.
When you tried to friend me, I responded with a single question: why? I’m not sure yet if I’m interested in your interpretation of that question or your answers to it, but I am interested in a thought-ramble about you. Stina complained I only wrote hurt letters to her, and maybe it’s time to fix that.
To start with, I never wrote hurt letters to you for a few reasons. One is because the pair of you are a collective unit, and I knew whatever I wrote would make its way to you. You were my friend first (Stina intimidated me terribly when we met), and we were so close of course I had to be friends with both of you. We told strangers we were siblings. We told your coworkers we were siblings. And I loved you like the brother I wanted to have. You frustrated me and hurt my feelings and I loved you anyway.The relationship we had could not be quantified in words, could not be described with pen to paper or words on a screen. I didn’t write you letters because I don’t think about you in words.
Not speaking to Christina hurts. Our whole relationship was built around words, around the way we used them and had shared language to draw upon. Not being near you hurts. I miss the physical comfort I had with you–it’s hard to come by, for me, but you made me feel at ease.
You hurt my feelings–often, actually. You refused to use the language I asked you to about my sexuality. You were so dismissive of non-binary genders I never made a sound about my own after a single, tentative suggestion. You styled yourself as an expert on the autism spectrum because you work with little boys with social issues. Dylan. I’m not a ten year old, socially awkward boy. I’m me. And I’m autistic. Insisting I was wrong, that I was looking for excuses, that I wanted to be special, it fucking hurt. You never noticed that I hate the Little Prince, hate it with a passion. Instead you got me another, more special, more expensive copy.
I wasn’t a model best friend. I still don’t know the full story about your falling out with your parents. I don’t know if you had lung problems before you started binding. I don’t know why you became a vegetarian. I don’t know a fucking lot of things. I was afraid to ask. Asking feels off-limits, so staunchly rule-breaking I can’t do it–not an excuse, just an explanation.
I don’t know anything about you anymore, and I’m no longer sure you know anything at all about me. I’m not sure I want to be friends with someone who made me feel inferior all the time. So, why? Why ask? Why now?
Tagged with: ableism • ali • asperger's • autism • depression • disablism • dissolution of a friendship • friends • frustrations • therapy
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
The Polite Yeti - My personal tumblr, full of silliness.
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
Please buy things from me:
A brief history:
