The Alternate Lexicon
Currently viewing the tag: "meta"
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.
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?
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 had no plans for a medical transition. I had barely come to terms with the effective reality of not being a girl, after all, and all of the names I liked and wanted to associate with myself were feminine, anyway–or at least the sort of names that would be read as feminine on my person, old-fashioned androgynous names that had long since been entirely overwhelmed by girls and women. So I gave myself a new name, one that fit much better than the old one, and didn’t think about giving myself a more masculine name.
I still have no plans for a medical transition, but I’m in a better place than I was a year ago, and my name is fine but not always me.
It might be nice if I can sometimes be Eliot. A gentle tease for all of my Australian aquaintances who can’t hear the difference between Ali and Ellie, and a sometimes-better fit. Eliot. Els. Yes. I think so. Sometimes.
Tagged with: a little bit late • ali • frustrations • gender • genderqueer • melbourne • meta • new name
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
I’ve been officially labelled.
It’s been a long time coming; years of wondering and researching and affirming have built to today. I’ve dissected my thought patterns, my behaviour, my exchanges with other people, and it all led me back to autism. I knew. Now I have a bit of paper backing me up.
My official dignostic label is Asperger’s syndrome. The highlights from my meeting include a persistent-tending-towards-unhelpful eye for pattern and detail, excellent verbal communication skills with few nonverbals to back them up, and literal thinking. These are all things I’d remarked upon before, and it feels reassuring to have professionals notice and remark upon them, too. No matter how dutifully one tries to be introspective, there is a certain point at which no one can tell truth from personal fiction, and I had a persistent fear I’d somehow crossed that line despite how well the category fit.
It was interesting to get to experience the ADOS (section 4) and speak with someone who is also passionately interested in autism for hours. I regret missing the cue to ask about my examiner’s autism-related blog (completely missed that), because I think it would be interesting to read (though, as I actually responded to her telling me she blogs about autism, I’ve probably read it!).
Parts of the interview were really difficult. It’s frustrating to discuss emotions and when I feel them when I struggle to identify those things at all and the categories she presented felt artificial. Does anyone feel just sad or just angry or just anxious or just afraid? How can you tell which one it is? They’re all jumbled together for me and I don’t know I could separate any of them (save maybe fear) into its own box and label it appropriately. It was also really hard to talk about Stina and Dylan and how I felt about being lonely. I’ve felt a bit raw about them since we fought and especially in the last couple of weeks as Kitty and I try to plan going to Disney, a place I associate strongly with Stina and Dylan.
Part of my interview involved working out the story of this book. It’s beautiful and the illustrations are exceptionally detailed–just the sort of thing I like. Apparently I saw things that no one had ever mentioned before in those details. That’s me: missing the big picture half the time, but wonderfully observant about things that interest me.
I want to thank TEACCH for providing this service to me at no charge. It means a lot to have an official diagnosis in my pocket in the event I do need any sort of services or accomodations, and it means even more that the state of North Carolina makes it available for all residents who need it.
It’s been an interesting week.
Yesterday I quit my job, the one I didn’t like and had to drive an hour each way to do. I have interviews scheduled and a lot of hope, and a lot of horrible anxiety, which is why I now have vanilla coke. It helps.
Thursday and Friday, I exchanged emails with Stina which curiously involved me apologizing an awful lot and her not at all, because I very strongly value having her as my friend even if she isn’t a nice person (1). I also learned from Kitty that generalizing lessons about emotional intimacy is probably a good move. Huh. Anyway, this led to an awful lot of sobbing and feeling pretty much like I must be broken in some way to not be able to sustain my friendships from college. And that led to…
Opening an email from Alice. It’s been sitting in my inbox, marked as read, for just over four months. I didn’t open it originally because it was two days before I started my new job (which turned out terribly anyway) and I might not make a personality disorder out of it, but I can certainly be avoidant. I didn’t open it later because it’d been a long time. Then I didn’t open it out of habit. So I opened it, and it was a very long, beautiful, heartbreaking apology letter (I habitually distrust email subject lines, so the fact that it said it was an apology didn’t convince me). It was everything I would love to get from Stina and Dylan and don’t really expect.
So then I cried some more. And then my job was over and I slept for ages. And then I went to the farmer’s market with my mom and we bonded (! I KNOW!) over apparently being unable to make our loved ones feel emotionally connected to us because we are demonstrative sort of people, not declarative, and apparently that makes people really annoyed. And then I wrote a blog post about it using really terrible grammar.
AND THEN I DECLARED THAT I AM A ROBOT MADE OUT OF MUSCLE.
And then it was over. Except for a footnote.
1. I would like to know why it’s okay to say that when we’re friends, but not when we’re fighting. I genuinely do not understand the difference. I’m expressing the exact same sentiment, but it was hilarious once and now apparently elicits tears.
Tagged with: ali • AND THEN BAD GRAMMAR HAPPENED • apologies • asperger's • autism • depression • disablism • dissolution of a friendship • family • friends • frustrations • kit • loneliness • meta • omg • utter pedantry • work
Lots of thoughts, not a lot of brains.
Two important things have happened, however.
1. I will be done with my current job on December 17th. No, I do not have another job lined up (though I’m applying and interviewing). I am surprisingly not too anxious–yet.
2. I cut off all of my hair.
[Picture of the author, who has short, red hair and is doing their best Lesbians Who Look Like Justin Bieber impression]
I stopped being friends with Alice when she blew me off.
Alice and I met within days of starting at Mary Baldwin. We auditioned for and joined the Madrigals together, and just hit it off immediately–similar senses of humour, both smart and curious about the world, and rather similar politics (though her Catholic homeschooled background made it hard for her to admit she was liberal, let alone progressive). She was one of my very best friends for the three years I was in college. There were regular rumours we were dating, we were so close.
I left and went to Australia and my girlfriend (much to Alice’s annoyance) and tried to keep up our friendship. I wrote in my then-blog, I wrote emails, I called a handful of times. The burden of maintenance was mine, but it was okay: I’d get back to the US and see her again and our friendship would properly pick up where we left off.
Except that it didn’t.
Alice and I made plans as soon as I knew I’d be back in town. Kitty was with me. We’d meet for coffee and catch up and everything would be great again. But Alice didn’t come for coffee; she blew off our date entirely to make an “emergency” trip for cold medicine for her (adult, able bodied, car-owning) roommate and then never rescheduled.
I put my foot down. Alice had blown off small things with me in college, and I’d always forgiven it. I knew that I liked more concrete plans than she did, and that she had many friends who were cooler than I was, so there was always a chance of being left for a better time. At the end of our second year, she decided unilaterally we shouldn’t be friends anymore since I was just going to leave anyway and she was bad at keeping up friendships; it was only after I pleaded to keep my best friend that we stayed close for the last year. Being ignored to baby the person she lived with was the last straw for me, and I cut Alice out of my life. We’ve exchanged emails once since then, which were unproductive, and she emailed me in September. I haven’t opened it. It’s been two and a half years since I lost my best friend.
Stina and Dylan were there when we fought: Kitty and I were staying at their house on that trip to Staunton, before I moved back to my college town. They were there when Alice and I fought over email–hell, Dylan was the one who opened the first email for me and read it, so he could warn me if I wanted to read it or not.
I’ve known Stina and Dylan since about a week into my first semester at Mary Baldwin. We met when I joined the queer/feminist group on campus, which Dylan and I would eventually co-run. They were my other best friends, complimentary matches for me and each other. It was a little easier to keep up with them when I moved, because calling one meant getting both, and they opened their house up without hesitation for us when Kitty and I arrived in the US. They invited me to live with them while I figured out what the hell I was going to DO with my life.
I don’t know how to write the collapse of our friendship. It’s raw and it hurts and none of the paragraphs I’ve started in this space are accurate.
I felt left out, ignored. I saw patterns in their treatment of me that made my heart ache with loneliness. I watched them each grow more unkind and reassure each other that it wasn’t so. I felt entirely unrespected. I couldn’t talk about it, too afraid to bring up small hurts but dwelling on them endlessly until they became big hurts and then I’d explode. But by then they’d forgotten the small hurts and I was making something out of nothing. For a psych major, Dylan is fucking terrible at introspection.
I was told, explicitly, that I was not autistic because i didn’t match his expectations of what an autistic person should be. I was told I was a lesbian, and any attempts to restate my actual identity were dismissed as trivial. I was told that genderqueer people don’t exist or are just indecisive. I was told I was petty, and rude, and embarassing to take out in public. I was told I was mean and hateful. I remember every fucking word that was said to me. They inform my self esteem and my sense of who I am and sow seeds of doubt deep into my heart.
We fought again and again. My therapist told me they were poisonous, no good for me.
I wish I’d listened to her. I wish I’d been able to listen to her. I defended them vigorously and angrily. How dare she say that about my only local friends?
I moved away in April. It was for the best; they hurt me again and again and while nothing seemed to change on their side, I felt broken and tired. I ended up here. I saw them in September for their wedding.
“Come for Thanksgiving. We miss you!”
So I asked off for Thanksgiving. I asked when they wanted me to come up. Two weeks ago they broke it to me: I’d be welcome to come, but they had no guest bed and were planning to spend black friday on a prolonged date.
Wait. So I’m welcome to come up, but I have to spend one of 3 days with them by myself because I am less important than them–married to each other, living together–having a date.
I didn’t go. They got their black friday together. I got time to myself without being touched and harassed and quiet. Lots of quiet.
“Dylan Grey had an awesome black fridate. All of my shopping is done. ALMOST. Lovely day with Christina Scott Sayer Grey, with delightful guest appearance by Megan Kolano. Tangled was GREAT. Bella is cuddly. Dylan out!”
They let a friend join them after all.
I think this is the point where I say I’m done.
Tagged with: ableism • ali • apologies • asperger's • autism • depression • disablism • dissolution of a friendship • friends • frustrations • kit • loneliness • meta • 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:
