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.
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.
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’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.
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.
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.
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.
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: