Middle school was rough. I was thirteen and still liked to dress up and then carefully arrange my dolls. [...]]]> 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.

I actually did end up writing a really great piece about what it’s like to be autistic for TEACCH, which I will publish [...]]]> 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.

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 [...]]]> 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.

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 [...]]]> 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.

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.

Lots of thoughts, not a lot of brains.

[Picture of the author, who has short, red hair and is doing their best Lesbians Who Look Like Justin Bieber impression]

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 [...]]]> 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.

November is a hard month. It contains Kitty’s birthday and the mixed feelings I [...]]]> It’s been a long time since I updated, but I felt it was important to post today. I missed Autistics Speak Day at the start of the month and just seemed to lose a lot of steam (pun intended).

November is a hard month. It contains Kitty’s birthday and the mixed feelings I have about that (glad she has a birthday, not glad I can’t be there with her for it). It is also often a time of year I find myself increasingly depressed; as much as I truly enjoy winter and late fall, I still have a biological reaction to it that is a lot less joyful and a lot more sobbing. I’m also having a weird sense of loss this year, because Greensboro doesn’t get snow. Last winter had a shitton of snow (that’s a precise measurement) and I will be lucky to get a flurry this year. I like snow–except digging my car out.

This November has been especially difficult: I still have a job which I do not like and feel is not ethical; I do not have a replacement job lined up; I have started to come out to coworkers about this autism stuff and that’s led to what feels like bullying, even though I strongly suspect it’s just meant to be friendly teasing (and then I feel crappy about feeling bullied, because I really did have a true bully at my previous job and this is pretty minor in comparison); I had to pass up a last-minute eval appointment with TEACCH because I couldn’t get off work; I’ve been sick twice this month, totalling about 14 of 20 days so far. I think I actually prefer the sporadic and scarily violent times I was hit or kicked at my previous job to my 10+ small kicks, hits, pinches, slobbers, and otherwise “affectionate” violent and upsetting touches every day.

I am sick of being assaulted, sick of being sick, sick of yelling at people to stop doing perfectly reasonable things like stimming because I’m supposed to, sick of feeling like a traitor to all my fellow autistic people because I get so damn frustrated that I understand the autistic line of thinking many of the people I work with follow, but due to a 4-5 standard deviation gap in our verbal and processing speeds I can’t figure out how to help them. How do I explain to someone that, actually, I totally get what it’s like to want to hit yourself or bite your hand and have a meltdown, and this is a good way to defuse that feeling rather than having the meltdown? I understand, but I can’t communicate that meaningfully, so all my insights into how to help are useless. I can see that the autistic man with overwhelming ADHD and difficulty with reading needs to have all information blocked out on the page so he can concentrate on the letters; I can’t figure out how to convince him to use the tool I made. Then we both get frustrated and he hits or kicks me and I have to go have the same meltdown I had to scold someone for an hour earlier.

I am sick of feeling utterly alone. Kitty is there, and lovely, but long distance hurts in a physical sort of way. I thought that I had plans for Thanksgiving, but they weren’t a priority.

So…whining wasn’t actually what I wanted to write about. I wanted to write about how today is Transgender Day of Awareness and how I have come to identify as genderqueer over the past couple of years, and how I’ve never come out except to Kitty before. But now I’m crying instead, so I think this is done.

Oh, and my name has been changed.