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 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.
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.
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.
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.
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Are you ready?
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Let’s go!
Does your hair look right?
Is your fly done up?
Have you popped your pimples?
Have you got your coat
And some lippy on?
Just keep it simple.
Are you all cashed up?
I could lend you some–
Well, I’d be glad to.
Have you had a think
And a warm up drink?
Now, now, now, now.
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Are you ready?
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Let’s go!
Is the cat put out?
Is the iron off?
We don’t wanna come home
To a fire.
Have you trimmed your beard?
Are your sandals shined?
Do you look like
A hipster messiah?
Have you got your keys?
Have you got ID?
Did you bring a comb for Gary?
Have you had a think
And a warm up drink?
Now, now, now, now.
(Get ready
Get ready
Go!)
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Are you ready?
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Let’s go!
Leave your book and leave the mirror
‘Cause you’re already stunning.
The sky above was never clearer
And the engine’s running.
So cast aside your novelty ties
And bury your vendettas.
Life is short, but tonight your ass is mine, mine, mine, mine.
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Are you ready?
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Let’s go!
Leave your book and leave the mirror
‘Cause you’re already stunning.
The sky above was never clearer
And the engine’s running.
Well the end is nigh and there’s not much time
To get things rolling.
Life is pain, but we’re okay, now, now, now, now.
Now, now, now, now.
What have I forgotten?
The horns!
Now, now, now, now!
(Get ready
Get ready
Go!
Get ready
Get ready
Go!)
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Are you ready?
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Let’s go!
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Are you ready?
Are you all ready?
Are you ready, get set,
Are you ready, get set,
Let’s go!
HI IT’S BEEN A WHILE.
So it’s been a bit of a while since I updated this, my very realest of all of my blogs. In that time:
1. Kate released a new album under a new name, a technopop collaboration with her husband called Fatty Gets a Stylist. It is amazing.
2. Kit came, we went to Disney World. We hung out. We fought a little. We looked at real estate. We realized it’s only 10 weeks before I move for permanent for real omg omg.
3. Sar and Hez came to visit!
4. I have acquired a few fanblogs. Being that I am the loudest member of the nonexistent fandom for MBT, I have TWO fan tumblrs. Also a Kate one. Also I’m awesome. (The Explicarium, the Branden Rose’s personal tumblr, Just Gristle and Blood) Don’t laugh at the bad graphics on the last one; I’ve taken control of it from a previous mod and don’t know how she’d feel about me making it AWESOME.
And now it is time for pictures!
The rest are available in the main flickr set. YAY!
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?
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:
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- October 2010
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009





