The Alternate Lexicon » Uncategorized

cause surely you have some kind of opinion

Ali — Wed, 25 Jan 2012 03:15:38 +0000

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

the devil’s in the details

Ali — Fri, 13 Jan 2012 00:24:26 +0000

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?

lose ourselves in time

Ali — Tue, 27 Dec 2011 07:02:46 +0000

It’s almost the end of the year, and I’ve done a rather terrible job writing and updating. I played with the layout a bit, but I’m not sold on it as a permanent fix. The 2012 layouts should be out soon, so I’ll hold out and see what’s coming and how I’d like to play with them.

Melbourne continues to feel strange, home and not-home all jumbled up together. The past month has been harder than the ones before it, as I find myself missing Stina and Dylan badly even as I’m growing into more and more of my own person. I read somewhere recently that it’s not unusual at all for autistic people, but especially autistic women, to lack a strong sense of self and identity–it’s something I definitely identify with (oh, irony). I have been so defined by that friendship for so much of my life, and all of my adult life at that, that I have of course been confused and lonely and unsure of how to go about being me separate from them. I’s been a good thing to mull over, thinking about how to deliberately choose who I am and who I can become.

I know 2011 hasn’t been particularly great for many people in my life, but it’s been positive on the whole, for me. I’m happy to be here. We’re in discussion with our immigration lawyer to begin my trek towards permanent residency. I have a job, albeit a terrible temp one, and make enough money to live comfortably and save for said immigration. I have grown infinitely more comfortable with both my autism and my gender, and my metacognition is much happier than it was a year or even two or three ago. While I am still sad because of Stina and Dylan, I am feeling like I am going to be okay.

Next year is going to be good. There are lawyer appointments and immigration agents to meet. I’m going to have a booth at a local artist’s market in January, and if it goes well I’ll sign up for more times in February, March, and April. I have insurance that will pay for me to get a massage every once in a while. There is a very, very strong chance we will get a second kitten to keep crankypants happy and entertained. I’m going to Port Fairy. Kate Miller-Heidke put us on the guest list to come see her for free, because we’re awesome. I’m considering scraping together the cash to take a course in Auslan (Australian sign). I found a choir I want to join. Maybe we can talk Hez into visiting. I’ll try to write more here, not just reblog on tumblr.

I think it’s going to turn out just fine.

I’ll take a cappuccino

Ali — Fri, 04 Nov 2011 22:22:21 +0000

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.

sun please step on this rain

Ali — Fri, 28 Oct 2011 08:11:15 +0000

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.

come back home where it’s always hot

Ali — Sun, 16 Oct 2011 04:44:37 +0000

Been in Melbourne for a while, now. I have a temp job lined up to start this week. We have a lease that starts a week from tomorrow. Prosper is starting his trip tomorrow (miss the cat, so much).

I found these delicious things at the grocery store here:

I found these on a lamppost:

This has been an update.

do you ever get the message

Ali — Wed, 21 Sep 2011 01:56:45 +0000

Best spam I’ve had in a long time: “Moncler is simply worthy of the particular emperor for off jerkin.”

Thank you, spambot. That was the best random collection of words and non-words I have seen recently. It’s sort of like what the sims speak.

you came over

Ali — Mon, 19 Sep 2011 03:34:46 +0000

Less than a week in the US. Feels weird. Words are a little hard to come by now that I don’t have to pretend to be fluent and fluid and talkative at work, which maybe says something in favour of faking it or maybe it’s just about regular sleep schedules. I have packed and repacked, abandoned much of the stuff I thought I simply had to have to exist, and decided more hair dye totally beats clothes any day, because awesome hair is awesome even if I only have pajamas and t-shirts, and manic panic is hard to come by there.

We spend a lot of time looking at houses in between my fits of playing the sims and trying to shove more stuff into my over-full suitcases and being sat upon by the cat, who is in a panic, too. I have chai cola. It is delicious. My life is inane.

I am feeling resilient and tired and ready.

you looked just like your picture, only deeper

Ali — Wed, 07 Sep 2011 23:23:59 +0000

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.

Why do you always get to ask all the questions?

Ali — Fri, 26 Aug 2011 22:51:14 +0000

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.