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.
I’m getting really tired of the implication I should be grateful.
Australia is meeting the bare minimum standard of decency by allowing me to immigrate as Kit’s partner. We are in a relationship and have been for over eight years. I should not have to gush at length about how good and kind it is that they recognise us as a couple and graciously allow me the chance to immigrate. The US refusing to let me sponsor her is not and should not be the baseline. They are failing.
If I visited Australia, met a man, and we eloped, I would be allowed to immigrate with less effort and signficantly more dignity. Kit and I have to provide repeated statements about our lives and history and relationship where a marriage certificate would suffice if we were straight. Because we aren’t married, we have to meet rules about length of cohabitation that are extremely difficult for us to meet because, get this, international travel is really expensive and vacation visas are really short. Because we’re both girls, we can’t get married to escape the cohabitation clauses.
We’ve tried playing by the rules. There’s a potential loophole for queers: getting registered with the state government. Nevermind that registering a domestic relationship sounds (and is) creepy, is somewhat costly, and grants us NO other rights except the waiver for how long we can afford to live in one place. Nevermind that it doesn’t even carry between states, so if we moved it means nothing. We applied anyway. But the guidelines say you have to have lived in Victoria for 12 months, the same as the cohabitation rules. Mind you, these are guidelines, not rules. There is some discretion involved. In theory. Given the reactions of everyone who has touched our paperwork, I expect that will be denied. Oh! And we won’t know for 4 weeks, because like underage children trying to get married on the sly, domestic relationships have a waiting period. You can get married the same day as you apply, but not registered, and it is entirely out of our hands. We don’t meet with someone who talks to us and assesses our merit. We submit forms and hope they are having a good day.
So, in order:
- Can’t bring Kit to the US because she’s a girl (secondarily, CP)
- Can’t live here for more than 12 months at a time unless I’m on a student visa, which is pricey due to tuition. Kit can’t live there for more than 3 months unless she got a student visa, which is even more pricey.
- Can’t get married to waive cohabitation requirements
- Can’t get registered to waive cohabitation requirements because of inbuilt cohabitation requirements for that
- Can’t actually get stuff for my visa application I need like fingerprints because the wait list is 3 months after my visa expires because Victorian bureaucracy is shit (this isn’t related to being queer, but it’s not helping, you know?)
- Can’t get any help from the embassy (I know, I’ve been emailing them all day)
- Can’t get permanent (any!) work because of my visa. Why hire someone on a visa due to end in 2 months if you can get a permanent resident or citizen?
And I’m supposed to feel grateful?
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.
Eight years ago today, give or take a time zone, I talked with my best friend. She was living in Australia and I was just finishing up my first year of college at Mary Baldwin, and some time in the preceeding few months I’d realised I was having romantic feelings for her. Eventually, I spoke to her about this, and was surprised and pleased and grateful when she reciprocated; it wasn’t quite how I expected that to go.
When I finished college, I moved to Australia to do more school and to finally be in the same place as her. We’ve done a lot of international travel, gone on lots of vacations, and now we have a little queer family with the two of us and our cats. I’ve gladly stayed with her through foot surgeries and corneal transplants and a great library science program and lots of stories. She’s stuck with me through a slow-build autism diagnosis and lots of gender questioning, basically dropping out of grad school, and deciding to go back. We’re making my immigration happen together.
Thank you, Kit. Eight years and we’ll keep going from here. Every day is incremental and is the longest I have ever loved you. Tomorrow will be even longer.
So…er…hi. Hello. Attempts at keeping a blog: still a fail.
What’s happened since I last blogged? Well!
I’m back working in the mildly soul-crushing job I had when I last lived in Melbourne. It’s basically where rich people pay me to read the newspaper for them, and I pretend I live in a steampunk dystopia. This is enhanced by my now-regular presence at Rose St. on the weekends, an artist’s market where I hawk the stuff I otherwise have on etsy. It’s fairly effective, because hipsters like cheap jewelry and it’s in the heart of hipsterville (though, as I discussed with another artist there, the area is decreasingly trendy and we’re worried the hipsters are disbursing across the city). The job is full-time and I get paid a salary, which is weird but not unpleasant.
Kit and I went to Port Fairy for the folk fesitval, which I hadn’t been to in 5 years. It was great, lots of fiddles and instrumental groups, though last time it was ALL KATE ALL THE TIME, so I was a bit sad without that element. None the less, we saw a lot of acts I really enjoyed, including Ben Sollee from the US who I’d somehow never crossed paths with before, which is funny since we lived on opposite sides of the same mountains for a long time. Really great, weird folk-blues-jazz cello. Also loved both Beoga and Frigg, instrumental groups from Ireland and Finland, respectively.
We saw Kate a few times last weekend, and have gotten a copy of the new album Nightflight a few weeks early. It’s really gorgeous, and if you click over to the Kate tumblr (see sidebar), you can hear some previews. Much love.
My birthday was gorgeous, the first really fun one in years. I gave blood and chatted up the workers at the red cross about how I should work at the red cross, too, and then wandered around bike shops for a few hours before purchasing a gorgeous bike on sale. I am looking forward to a life of not being strictly beholden to the tram schedule.
Well, that plan certainly didn’t work out.
It’s been a whirlwind month, in my defense; I feel like my brain leaked out my ears.
We unofficially/officially/weepingly fired our lawyer just after I wrote in January. Neither of us could stand, in good conscience, to stick with a man who told us he refused to take payment in anything other than a lump sum because we’ll just break up like all his other clients. Charming.
We spent an awful lot of time looking for a second cat to join our little cat family and keep Prosper happy. He’s been bored since we moved here, after getting used to having both my mom’s cats available for play and/or harassment. This has meant a lot of walking around and yowling, which I’m sure you can imagine is charming and not at all likely to get us in trouble with the neighbors. This culminated in a kitten, Madeline, who is the nosiest, bravest little thing I have ever encountered. Nothing disuades her, and she is rather fond of Prosper already. Prosper remains undecided, but he starts yowling again if we separate them because he’s playing too rough. Fairly sure he thinks she is his toy.
I’ve been driving a couple times with our livingsocial flexicar deal. Turns out driving in Australia is fine, except the windsheild wipers and turn signals are reversed. Fuckers.
Last week my temp job unceremoniously ended. I was apparently mean to permanent staff. In my defense, they were terrible at their jobs, made mine harder, and got paid more money than me for it. Also no one told me to tone it down until it was over, which is not exactly helpful–or trust building. I didn’t disclose the autism stuff at that job because I thought it was just a temp position, but I will be doing so in the future. Better to be up front that I am not clear about what I can and can’t say without explicit direction. Lesson learned. However, that was the worst job I’d ever had, so leaving hasn’t hurt too much.
And that is why I haven’t written anything.
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?
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.
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.
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
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.
A brief history: