We deserve access to AAC!

Let’s talk about the impact of pushing speech only on children with speech problems. I was in speech therapy until I was eleven. I don’t remember everything about it, but I think I was mostly there because I said a subset of consonants differently than typical kids. I am not actually clear on whether people around me were really having a hard time understanding me, but looking back my impression is that my speech was not unintelligible, it was just different. So I have to wonder, were the years spent training me to talk “better” worth it?

Because, here’s the thing. The message I came away with, all those years later, was that the way I naturally did things was bad and wrong. Given, this message was coming across in more areas of my autistic life than just speech, but speech was certainly one reason I felt like who I was wasn’t okay. That has had a lasting impact on my self esteem and mental health. I was being given rewards for pronouncing things right, and drills and homework when I did it wrong. Meanwhile, I am not sure it ever occurred to anybody to actually ask me if I wanted to learn to pronounce things differently, or whether I was comfortable with the way I sounded. I know I did not enjoy my speech homework: reading aloud at night. Mind you, reading and books and words and letters were my special interest, but I did not see the point of reading out loud if I could enjoy my book twice as fast by reading silently. I do not remember expressing any of this, I needed love and approval too much to risk voicing my internal dissent as often as I felt it.

It also did not seem to occur to anybody that speech might be even more difficult for me than was represented in my actual output, and that it was just getting more and more exhausting the more I tried to say things the way they wanted me to. It’s only now, as an adult, that having access to AAC is showing me how different my early life could have been if that struggle had been better recognized. With AAC it’s like a giant weight I hadn’t fully realized was there has been lifted. For example, in sign language I find myself outgoing and energized by social interaction, the complete opposite of my other experiences socializing. Using dedicated high tech AAC on a day to day basis tangibly improves my life as I can express myself more fully with less difficulty and I have more energy to spend on other tasks. So why didn’t anyone try me out on these options when I was in speech therapy?

Not being diagnosed autistic at the time perhaps has something to do with this, but I believe it shouldn’t. I think everyone in speech therapy for any reason should be considered candidates for AAC – not in the sense that the therapist thinks about it for a few seconds and then checks a box saying it’s been considered but isn’t necessary, but in the sense that it is presented to the communicator early on as an option they’re welcome to explore if they think it would be helpful. Please note that I said “presented to the communicator”, not “presented to the family”. Caregivers don’t have the right to make decisions on behalf of disabled people about how we communicate; every human being has a right to determine that for themselves. It’s caregivers’ and professionals’ job to provide as many options as possible. This statement is not dependent upon perceivable verbal ability. People with any kind of struggle with speech, language, or communication – no matter how adequate or promising you think their speech seems to be – might possibly find AAC easier, more effective, or otherwise preferable for expressing themselves fully and without undue hardship.

Presenting atypical communicators with these options and determining whether they want to work on speech, pursue AAC, or both is going to look different for different people. For an apparently verbal autistic kid like me with pronunciation problems but demonstrated ability to understand and respond to questions about preferences, professionals could initiate a verbal conversation about the topic accompanied by demonstrations of some AAC methods and directly ask what the person wants to focus on. For nonverbal kids who haven’t yet been given supports necessary to demonstrate their ability to understand questions and communicate their preferences, this can be approached differently. Pair speech with sign language and/or picture boards early and consistently, and wait to see which method of communication the child attempts to learn. If the AAC methods have been presented as equally favorable as speech – if no one is coercing the child into focusing on one of the methods over the other – the choice of communication method(s) the child begins to use is in and of itself an expression of their needs and preferences. In either of these scenarios, if a communicator chooses to use AAC, professionals’ and caregivers’ job is to make sure we get quality tools for the method(s) we show interest in (symbol books, letterboards, devices, etc), to model consistently and intensively so we can learn to use those tools comprehensively, and to actively validate our communication methods as equally valuable as speech.

Making sure we have the chance to try AAC if we want can have such a positive impact on autistic people. For one thing, it’s a chance to give us agency over our lives, something too often stolen from disabled people. It sends the message that there is no one right way to communicate, that any method or pronunciation or word order is effective communication if it’s getting the intended meaning across. This could do a lot for the self esteem of those of us who communicate atypically. And finally, for those of us who do end up finding AAC more comfortable than speech, it’s opening a door to a priceless tool that can improve our quality of life drastically. Please never assume, based on what you see from the outside, that we don’t need what’s behind that door. Give us the chance to decide that for ourselves.

 

Credit to my dear friend Saoirse for being a second set of eyes on this post.

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“I am from”: a poem

I don’t plan to normally post poetry on here, but this piece I did for a recent school assignment contains themes highly relevant to this blog, so I decided I will share it. (I used to write poetry all the time; but it’s not really currently my thing. Not sure why.)

Content warnings: ableism, heterosexism, cissexism, involuntary treatment (including restraints), abuse, filicide, vague Holocaust reference, vague self-harm reference

 

i am from altitudes, latitudes, longitudes

towns and cities, forests and deserts

houses and apartments and tents and sleeping bags

i am from values – a childhood refusal of meat and an adolescent refusal of school

i am from habits – ink, fibers, fidgets, scars

 

but mostly, i am from people

i am from people who have been stigmatized

institutionalized

fetishized, pathologized

disenfranchised

sterilized, experimented on, exterminated

 

i am from people who have been kicked out – young rain, grimy streets

locked up, restrained – screaming the pierce of unwanted needles

policed – our clothes and bedrooms

impoverished – mountains of paperwork just to survive

shocked – pain meant to train us

to act less queer

and more neurotypical

sickened – empty pill bottles, turned away from the ER

misgendered – the hollow feeling of unseen selves

cis doctors can deem ineligible for transition

deadnamed – IDs betraying unasked-for history

the Ms and Fs written in stone

ignored – eyes skip over us, accommodations unmet

assumed incompetent – the fake syrup of “baby talk”

left to die – nursing homes don’t care to set us free

abused, assaulted, murdered – and our caregivers get sympathy

for how hard we must be

to deal with

 

all this, and my people

have chained themselves to buses

crawled up the steps of the capitol

testified in congress

occupied senate offices until dragged out of our wheelchairs

resisted arrest

voted where allowed

called senators on text relay

sued the state

 

my people have crowdfunded each other’s surgeries

bound each other’s chests and zipped each other’s dresses

taught each other, parentless, to apply lipstick and tie ties

given advice, doctorless, how to choose a mobility device

and how to use the apps that amplify our voice

we’ve taken in our unhoused youth

gotten married

ordained our own clergy

danced and performed and marched our true selves

crashed the conferences where professionals like to talk about us without us

designed the research no one else is doing to increase our quality of life

taught our teachers what are actually our real names

 

my people defy norms

loud – rainbows and glitter and flags

proud – rocking and flapping and drooling

our existence, in this world, is indeed resistance

 

so i am from everywhere my people are oppressed

and i am from everywhere we fight back

 

Credit: I don’t know who came up with the phrase itself, but I found the quote I referred to (“my existence is resistance”) on one of my favorite shirts to wear by Model Deviance Designs – go support them!

Thanks for reading.

Day in the life of a part-time AAC user

It was hard to pick a single day to attempt this on, because my days all tend to be very different from one another rather than having any one “typical”, but here is my December 6, 2018…

7:30am: It’s time to feed my cat. I know this routine. “Your turn,” I tell her. It is an echo, something I can say with my mouth voice most days. Echoes are usually easier than spontaneous speech (here’s a video about echolalia if you’re unfamiliar), and talking to my emotional support animal is usually easier than speaking to other people.

7:45am: Taking the trash bag out, I see a neighbor I recognize in the lobby, but feel no pressure to speak. My neighbors know that I don’t. Well, most of them are under the impression that I never speak at all, an idea I deliberately allowed to build up. It is just so much easier than needing to justify using AAC part-time. Unfortunately, knowing I use AAC means most of them ignore me most of the time. It is a little sad that due to my communication method people here do not get to know me, but still I feel much more comfortable here than at the last apartment I lived at, where every elevator ride necessitated spoken conversation.

8:00am: The cat, now, is very awkwardly trying to arrange herself on my lap. Getting impatient, I say, “what doing?”. She doesn’t know that sentence was supposed to be more fleshed out. That’s why I don’t mind talking to her so much.

9:30am: On the train ride I start this blog post, using my symbols app to compose sentences and then copy and pasting into Google Docs. Somebody hovers just behind my seat for a weirdly long pause as I work, and I have to wonder whether they are staring at me.

10:15am: I have a folder just for phrases I need for my weekly pharmacy trip – because the exchange is always so predictable, it is easy to make a complete script in advance. The staff there are familiar enough with me that they do not blink when I show up using whichever communication method I’m favoring that day. However, I find myself wishing that somebody there knew sign language. It would be a great situation to be able to just say what I need quickly, without having to balance my device against my stomach while juggling a bag of prescriptions.

10:30am: I stop by my clinic’s referral office to see if they can call the local specialist I’m trying to go see. I adore text relay, but it’s admittedly much quicker to have someone else make this kind of phone call than it is to attempt it myself. The person I find in the office says hello in response to my greeting but then goes back to working on their computer while I type my next message. At least they respond when I do finish rather than ignoring me completely.

10:45am: The receptionist at my therapist’s office seems to think I am ignoring them when they call me to the desk and I start typing. They’re relatively new here, but they have met me before – that time, they didn’t acknowledge my AAC voice at all. (To be fair, I am really bad at judging whether my volume is too loud or too soft, and people seem hesitant to ask me to change it, so it’s possible they really just didn’t hear me.) This time, though the interaction is successful enough to check me in, they misgender me in the process. The app I use only has one voice option that has a slightly between-typical-binary-voices pitch, but sadly that’s not enough to suggest to the average cis person I might be trans.

11:00am: My therapist is very familiar with my tendency to switch communication methods back and forth within the same conversation, so the whole fifty minutes my speech is interspersed with typing from my QWERTY app. I notice, amused, that some stims are easier with one method versus the other – use my communication device, and it’s easier to suck on my chew necklace, use speech, and it’s easier to flap. I do sign “sorry” at one point automatically before remembering he wouldn’t understand it.

12:00pm: I stop back by the referrals office to see if the staff person I was looking for has returned yet, and indeed they’re there to take my questions via my communication device. Since first meeting them they haven’t commented or questioned that sometimes I speak and sometimes I don’t, but this time they do say, “wow, you type so fast.” I’m tempted to reply “you speak so fast”, but, whatever.

1:30pm: A walk, train ride, and trip through IKEA later, I am sensorily overwhelmed and not very languagey. Hands too full to type, I ask the marketplace cashier, “find marzipan?” They ask me to repeat myself. Sadly, they’re out, but I get through the rest of the transaction wordless.

…my AAC-related life basically ended there for the day, because I proceeded to enter sensory overwhelm plus then got an upsetting email. I barely got myself home in time to crash. I didn’t have any more face to face interactions that day, but friends were incredibly helpful via texting and twitter in getting me through the crash. To be honest, that kind of communication is essentially AAC as well. It’s not called that because abled people use it, but it’s totally just a method of communicating that doesn’t use speech, so I think it counts.

Well, nothing like trying to write a “day in the life” post related to disability and having the day end up derailed halfway through by disability (or I suppose more accurately, by ableism/inaccessibility). But hopefully this post gave you, um, six hours’ worth of insight into my life as a part-time AAC user. As you can see, most days are a weird mix of increased access due to this assistive tool and simultaneously decreased access due to ableism. One of the most important aspects my communicative life is flexibility: I really value situations where I can switch between communication methods whenever needed. So one of the morals of this story is how crucial it is for me to have people and places that honor my communication needs and choices. That means training for professionals, more kindness from strangers/acquaintances, and relationships where I feel safe to unmask. Where I feel free to speak, if I’d like, the way I would to my cat. And where AAC is understood as a not a sign of failure or a lack of something to say but as a positive tool that helps me say all the somethings I want.

Ableism and invalidation

I am autistic. How is it that after finally accepting that, I still sometimes have doubts? Well, external invalidation, mostly. Unfortunately I have very recent experience with this, so this might be a hard post to write.

First, some background. I was not diagnosed as a kid, and while I know this has some privileges – for example I stayed safe from ABA – it also screwed me up in terms of self image. I knew I was different than the people around me, yet had no explanation for that (for my queerness or my neurotype). I knew people around me thought I should change, and I internalized that as: who I am is bad. So not only did I not know there was a perfectly good reason for the things I felt and did, I came to believe I was not a worthwhile person.

Skip to adulthood. A therapist who had experience working with autistic kids was the first one to tell me I was on the spectrum, in my early twenties. You might think at this point I would begin to understand myself better and feel more okay about being different, but… enter imposter syndrome. For one thing, nobody directed me to information created by actual autistic people, so when I looked over lists of traits I just saw a ream of behaviors. I wasn’t sure that I could see myself in that. How was I supposed to know whether other people thought my nonverbal communication was atypical (or etc)? One small manifestation of anti-autistic ableism is the fact that the diagnostic criteria and readily available lay information about autism is written from the viewpoint of parents and professionals. It frames autism as a set of outwardly observable behaviors – because our behaviors apparently inconvenience them so much. Their experiences are centered and ours are ignored. This prevents so many people from figuring out they’re autistic, or in my case, from believing that I was even after having been diagnosed.

This went on for a decade. I knew what that therapist – who had known me for years and who I trusted deeply – had said, but I kept thinking maybe it was a mistake or an exaggeration. You could say it took another counselor noting that I met the diagnostic criteria during an intake, and then my current psychiatrist and therapist confirming and making sure it was in my medical records before I really accepted it, but that’s only slightly what helped. It took, mostly, just hanging out around other autistics. For months if not years I introduced myself on AutChat as “questioningly autistic” and then “diagnosed-but-forever-imposter-syndromely autistic”. But the more autistic people I talked with, the more I understood how many ways there are of being autistic and I began to see myself in other people’s experiences. I got more information about what it feels like to be autistic, not just how it looks from the outside. And finally, wonderfully, a couple of years ago I got to the point of: “HI YES AUTISTIC HI!”

So the problem? The reason I still, every so often, doubt myself? Ableism, medical gaslighting, and other forms of invalidation.

This was exemplified last week when I found out the doctor the county hired to review my records and talk to my friend and I (for all of two hours) reported back that I don’t qualify for I/DD support services because I’m not autistic.

!!!, to say the least. This seriously messed with, and is still messing with, my self image. Hell, my self esteem. I’d finally become able to attribute all those things about me that people wanted to change to my neurodivergence (and my gender and general queerness and etc) and thus accepted them as valid differences that were not all inherently negative. That is, these things I used to think were “wrong” with me don’t actually mean I’m a bad person, they just mean I’m autistic! I’d integrated it in to a positive self identity and built connections in the community that have profoundly improved my life. So why. The. Fuck. Was this doctor allowed to just negate all that and proclaim allism?

I freaked out when I got this news, and in some ways am continuing to freak out. I’ve had lovely Twitter friends reassuring me on all fronts, and I just keep trying to remind myself: 1) the system is designed to find any excuse possible to weed out applicants so they don’t have to pay for benefits, 2) multiple clinicians who have collectively known me for close to a decade agree that I’m autistic, and 3) philosophically I already value self-diagnosis and community recognition more than professional diagnosis anyway. (Clearly; as my history shows I didn’t accept my professional diagnosis until I personally came to agree with it.) So why let this random doctor mess with my head?

I don’t have a neat shiny way to wrap up this post because I’m not through processing yet. It is helping to have peers name what happened to me properly as gaslighting and to have their support. Mentally running through all the “proof” I’m autistic is perhaps helping a little – or perhaps just turning into circular obsessive rumination, I’m not sure yet. Group therapy today happened to be helpful (frankly this is not necessarily a common occurrence) – the curriculum was about self esteem, and the therapist pointed out, “just because someone says something about you doesn’t mean it’s true”. And I suppose writing this has been helpful, because it’s good to place what happened to me personally into the larger context of an ableist world that habitually invalidates autistic people at every turn.

I hope whoever’s reading this can’t relate, but I know how common the experience indeed is. So I will say, if you have had situations like this, please feel free to share in the comments below and I’ll listen. And everyone reading this, if you’re ever in a position to actually validate an autistic person and feel like you can probably do so in a helpful manner, please do it! We are autistic, we are worthwhile, our experiences do matter, we do deserve supports, and we’re surrounded by a world that makes us doubt those things – so please believe us and affirm us.

My needs are not “special”, they are human: assistive aids in my life

I had a school project a couple of years ago where we were supposed to make a collage representing disability. I thought about the ways disability is tangible and visible in my life, and realized the most obvious images available to me were the assistive aids I have come to use as supports. So I started brainstorming a list of examples. It was not long before I came to the conclusion that there is not really anything at all in my life that I do without supports of some kind. Here is some of the most crucial of the list I developed – maybe you’ll see yourself echoed here, or find a new idea of something that might help you:

Applesauce: this is the only way I have a chance of swallowing my… what, eight daily prescriptions? Even this skill took very gradual practice with minuscule pill pieces long into my twenties. (As far as I can tell it’s texture sensitivity and oral motor skills problems causing the impairment.)

Earplugs/ear defenders: earplugs go in multiple times daily, most commonly for transit. Layering with ear defenders is the only way I have a chance of attending concerts (which, even then they have to be special interest related).

Baseball cap or sunglasses: again, these go on every time I leave the house. I have a really narrow window of tolerance for light level, so I’m commonly turning on the lights in my house yet can’t cope with direct sun.

Stim toys and jewelry: you know the catalogue. Every kind of fidget, scented plushies, chew necklaces and glitter-water bracelets and spinner ring, confetti wand and watercolor drip keychains, soft furry stuffed things of all sorts, weighted beanie creatures… yes, I have a bit of a collection. Just a smidge. I highly recommend Stimtastic.

Frozen meals: to abled people these may represent convenience, but for me they’re the only way to regularly eat main dishes that aren’t granola bars. Cooking is not in my repertoire. I’m trying to get some in home supports to help, but the county program is taking a million years to decide whether I’m too high-functioning. *rolls eyes*

Weighted blanket: yes, even when asleep I’m using assistive aids. It’s also useful for meltdown recoveries. Placing it on my lap is some kind of alarm bell for the house elf (my emotional support creature, another assistive aid in my life – Muggles think she’s a cat) instructing her to come sit atop and tend to my brain.

Text relay: I was stunned to find, after finally trying this, that I can now just… call people! I didn’t realize how much I avoided it until I got the accommodation that makes it possible. Question for doctor? Can now call. Appointment for food stamps? Can now call. Poking my senators for the third time this week? CAN NOW CALL. It’s honestly kind of life-changing.

Reading aids: I set my Kindle app to display books with a lot of extra spacing and the OpenDyslexic font – as far as I know I’m not dyslexic, but these adjustments make a huge difference in how likely I am to read on a regular basis. (I think it’s a visual-input-overload sensory issue.)

iPad/speaker: if you’ve read this blog at all you know I use AAC part-time. Now that I have an actual device I can’t imagine living without it.

Captions: like my iPad, I can no longer imagine life without these. As I rewatch old favorites I keep finding out there was dialogue I had no idea wasn’t just background noise.

Bus pass: I can’t drive. Access to public transit at a rate that is ~affordable for my poverty level income is the only way I’m able to get to the doctor, school, coffeeshop, etc. I also rely on the Trip Planner and Google Street View to orient myself in advance to unfamiliar trips. (Okay, truly I avoid unfamiliar trips, but when it’s absolutely necessary I need these tools to pull it off without a shutdown.)

To do list app: helps with some executive dysfunction issues. I need it to be on my phone so I can add to it anytime anywhere. I will stop conversations to do this, otherwise I’ll forget what it is I meant to add.

What is interesting to me about this list is how unremarkable many items are. Some don’t seem to have to do with disability, although that’s what I use them for, because they’re used by abled people too. It says a lot about the value society puts on disabled people that supports we need are labeled “special” or “extra”, while the tools abled people use are considered just mundane details, or perhaps cool lifehacks. We are shamed and invalidated for needing/using certain accommodations, while the things that make the world accessible to abled people are treated as value-neutral or positive. This is true even when the things we need closely resemble the things abled people do! Millions of people use Google Calendar to block out their day in color-coded rectangles, but if I use a different app to add images to my own agenda, it’s called a “visual schedule”, a disability thing. If every patient on the psych ward except me needs water to swallow their pills, the nurses happily bring water along for every dose. But since I need applesauce instead, the nurses’ realization that they’ve forgotten to bring it for the dozenth time is accompanied by a sigh of annoyance.

I want to use my assistive aids without getting weird looks and invalidating skepticism. I want them to be affordable, or even – *gasp* – free for people who need them. (Note that we should be able to establish our need without having to jump through… I think I’m up to seven months’ worth of hoops with the county program.) In situations they don’t interfere with anyone else’s access needs, I want them to be the default. I want them to be normalized, or at the least accepted. Hell, some days I’d settle for tolerated.

My needs are not “special”. They are human. Abled needs and their supports are not a natural default, they’re just privileged by virtue of the company they keep. Mine deserve just as much resources and respect.

What I wish others knew about interacting with me as an AAC user

Almost every single day I leave the house I end up in an awkward (at best) or infuriating (at worst) conversation with people who have no understanding of good AAC etiquette. Most abled folks have no experience talking with somebody like me – and that lack of experience, not to mention just ingrained ableism, shows in their behavior. Here are the things I wish everybody knew about treating me well when I am communicating differently than they expect.

The most important thing I can recommend is, just ask the person you’re talking to how to interact with them respectfully! Every AAC user has different needs and preferences, so while I think my advice below contains good starter recommendations for many AAC users you might meet, it is best to check with the individual person you are talking to what they prefer.

Be patient! Most of us need extra time to communicate, possibly quite a lot of extra time. I get that as a speaking person you might feel uncomfortable with stretches of silence you’re unaccustomed to, but please resist the temptation to fill it while I am typing. Otherwise by the time I am ready to press play you might be on a totally different topic, or you may have distracted me so much I wasn’t able to get out what I really wanted to. To me, my typing is just as much a part of my turn talking as is the part where my device actually reads my words, so if you would not interrupt a speaking person in the middle of their sentence, do not interrupt my typing either.

Some of us are d/Deaf or hard of hearing, have auditory processing issues, or have other receptive communication impairments, but many of us can understand your speech just fine! So please ascertain whether we actually need it before you start gesturing at us or writing everything down.

It is hard for me to participate equitably in meetings and other group discussions. I feel pressured to give up and speak if I want a chance to be listened to, or pressured to switch from my symbols AAC app to the QWERTY one I often can type faster on. Many days giving in and doing that means I have a meltdown or shutdown later. You might see me speaking and think it is comfortable, but in reality it may just be that you are creating an environment where I feel like I have no other choice, and you do not see the fallout later. For me it seems like the best way to include me in big discussions is to designate somebody to call the names of people who have raised their hands to show they want a turn to talk. It might feel more formal than your organization is used to, but it is the best way to include me in a way that respects my communication needs.

Please don’t read over my shoulder and try to finish my sentences for me. I might choose to show you my screen sometimes to keep our conversation private, but it should be up to me, so ask before reading over my shoulder. I’m happy to show you my screen if you don’t understand the device’s pronunciation the first time, or if I know you have auditory processing problems or other relevant disabilities. Some AAC users request that support people do attempt to guess the rest of what they’re saying, to decrease the amount of labor it takes to type, but if I haven’t asked you for that kind of help it’s rude to constantly be trying to talk for me.

Don’t take my AAC away for any reason*! Medical professionals, I’m looking at you. It is vital that I have as many communication options as possible especially in emergency healthcare settings, so if you’re going to confiscate my device you need to provide me with an equitable option – not just pen and paper. (Backstory = some psych wards don’t allow any electronics that have camera functions. This is sanist garbage; other hospital units are just as subject to privacy laws but don’t have the same rules.) Other AAC users face this breach of decency from caregivers or support staff, and it’s ableist and/or ageist bullshit every time. As advocates often say, “if you wouldn’t duct tape someone’s mouth closed, don’t take away their communication device”. (*Okay, the one reason I’ll accept is if the device is likely to get damaged, such as in a swimming pool. In which case, you should attempt to take it away with my consent rather than without asking. You should also offer at least a basic replacement means of communication safe for that environment, such as laminated picture cards or a plastic letterboard.)

Please let me know if I need to turn the volume up or down. I do have auditory processing issues such that I can be a bad judge of whether my device is set to an appropriate volume. I do not mind you asking me to play my message more quietly or loudly.

I may speak part time! Actually, I often switch back and forth between communication methods within one conversation. This does not mean that you can expect or pressure me to speak at any given point. How I communicate is up to me, and you need to respect that I have valid reasons for my choices without me having to explain myself to you.

To reiterate, not every AAC user will share my preferences, but these points are a starting place you can work from as you find out what the person you’re talking with needs from you as a communication partner. If you are a speaking person with an AAC-using friend who is being treated badly by strangers who don’t know how to interact, use your voice to educate the person on how to be more respectful. It is scary and exhausting for me to do that work on my own in every little day to day interaction, and unfortunately people tend to respond better when my speaking friends explain my need for AAC than when I try to advocate for myself. If you’re not sure whether your friend would want you to intervene in this way, find a time you’re alone to ask whether it would be helpful for them or what they want you to say.

Are you an AAC user who has additional input or other preferences? Please feel free to comment below.

I’m trans and autistic, and yes, (for me) they’re related

My gender is autistic.

I don’t mean my gender is autism, this is not a singular noun that names something I “have”, this is one of the adjectives that describes my gender, because it is one of words that describes me as a whole.

I use lots of words to describe my gender. You’ll get the whole list. But if I get one word, if the world expects a summary, then I say “I am trans”. I am. I don’t think there is, but if there were a scale of transness from 0 to 100%, I figure I’d be around 117%. So as a summary word, it works. If I get one more word, if someone wants to pin me down into something more specific, I’ll go with nonbinary. Not a man or a woman. But wow is it more complicated than that. I want you to understand why, for me, being trans is intertwined with being autistic.

My gender does not fit into normative social expectations associated with womanhood and manhood – just like my neurotype doesn’t fit into normative social expectations in general. I’m pretty sure I don’t even understand what those social norms are. I tried to make a spreadsheet, once, to collect stereotypical traits and phenomena associated with binary genders, in order to try to correlate my own parallel traits and see if I could match up my experiences anywhere. For example, I made a category for clothes – listing quintessentially binary-coded clothes items like lingerie, pantyhose, neckties, suits, et cetera. What clothes items would people who know me consider quintessential endever*? Well, probably knee socks with cool designs (birds, rainbows, dinosaurs, books, stripes) and Harry Potter T-shirts. (The socks are partly a sensory thing, and Harry Potter is my special interest, which leads us back to… hi, yes, autistic). These are not exactly very gendery pieces of clothing. And literally I don’t even know how lingerie or business suits work. Like – sizes, fastenings, names of components…? I never learned any of that. Nor did I learn the other allistic things people drape themselves in, expecting me to understand – facial expressions, nonverbal language. I mean, for all I know there are even differences in those minutiae between typical binary gender expressions. Maybe I can have a row on my spreadsheet for quintessentially binary coded body language – and then, the column for my own would be filled by… what, stimming? I mean, I imagine that’s the way I move which stands out to any given person around me.

So yeah, my gender is autistic. I mean, hell, do neurotypical cis people even make spreadsheets to try to figure out what gender is?

I want to explain the other words I use for my gender, less common than trans and nonbinary. You may think they are absurd, too specific, meaningless trends. I do not care. I do not need your approval to be who I am.

Neurogenders are genders specific to neurodivergent people whose experience of gender relates to their neurotype or who feel they can’t fully understand gender due to their neurotype. So one of the words I use to describe my gender is neuro-enby. (Enby is short for nonbinary.)

That starts to address what I’ve described above. Really, the social norms of gender are endlessly mystifying to me. I can look at a group of men interacting or a group of women interacting and feel like… I don’t know, another species? Or maybe like a stranger visiting a foreign land and deep in culture shock? These metaphors are too cliche to be fully accurate. I just know with my whole being that these are not my people. I do not belong. I watch, but I have no idea what’s going on or why. They all seem to be using an invisible dialect that runs under and over and alongside their spoken English, and I know that if I were to approach them and try to join the conversation I would be the odd one out – even if I’m not using AAC that day. Maybe they’d assume I was a cis person of the “opposite” binary gender, maybe they’d figure I was a gender nonconforming “one of them”, or maybe they’d manage to realize I’m trans but then would spend the entire conversation staring at me hoping for some clue as to “which direction” I’ve transitioned in… or, maybe they’d just attribute my weird gender cues to a more general weirdness they might describe as outcast, crazy, eccentric, unpleasant. I mean, I can put in effort to try to “pass” as cis and neurotypical – I can try to mask my autistic traits and aim my gender expression in one direction or another – but it’s really up to them whether any of it will work. Their preconceived notions about what makes a man and what makes a woman and what makes a normal brain will filter everything about me into their personal diagnostic framework and their personal gender categories.

That’s often safer for me, to shift my behavior whatever way I can to try to blend into the crowd. But the thing is, it doesn’t always work. Maybe I’m masking and gendering as hard as I can and they still spot the fake. Because for me being a neuro-enby means I never quite get the joke. It’s not just that I feel like I’m not one of them, often they notice something about me that confirms it. People say there are five love languages or something – well, if there are two binary gender languages, I don’t understand either. If there is one allistic language, I usually need a translator. So: neuro-enby. I don’t understand allistic or binary genders, and probably never will. They are unfathomable, incomprehensible. Social constructs? Sure. But I’ve never been that good at social stuff.

Okay, so you’ve got some of my gender words now. The others are neutrois stargender/dryagender/fasciboy-flux contrabinary genderpunk.

Neutrois, neutral gender or lack of gender, gets closest to describing my relationship to my body. To be frank, that relationship consists mostly of distress: a dysphoria I experience first and foremost proprioceptively, perhaps due to the autistic way I process sensory information. Various medical interventions can ameliorate my dysphoria, get me closer to the body I feel would represent my internal sense of self better – but with that I have to be careful. If the provider finds out I’m autistic, will they decide I can’t really be trans? I try to avoid using AAC when interacting with surgeons, out of worry they’ll think I’m not competent to give consent. But… why should I have to hide who I am in order to express who I am? I am neutrois. My body feels wrong internally. Body parts are not occupying the correct airspace, nerves go in the wrong directions, when I move my center of balance feels off. This is as integral to my sensory reality as is my difficulty processing auditory information and my hypersensitivity to bright sunlight.

Stargender: there have been stars in all of my names, my first tattoos were stars, I have always felt a strong connection to the symbol as well as the actual points of light in the sky. The way words are visually/kinaesthetically spelled is more important to me than their pronunciation, due to my autistic relationship to language and speech – so yeah, my name does have a star at the end as a silent letter. That’s just how you spell it, the same way it’s all lowercase because that’s just how you spell it. That’s what looks right. Is it autistic to be so attached to a simple abstract symbol? I don’t know. But starness is more a part of me than maleness or femaleness could ever be. Plus one of the meanings, beyond simply being the gender of a star, is that stargender refers to a gender which is unknowable. So, back to me and neurogenders.

Dryagender is a gender that has to do with the feeling of an empty forest. I was born in the forest, at least in the sense that is important. I am a creature of the forest; no matter how long I live in the city, that cannot be separated from me – just like being autistic cannot be separated from me despite how long I spent surrounded by people training me to pretend otherwise.

Fascigenders are genders specific to autistic people that relate to a special interest. Well, as mentioned, Harry Potter is my special interest. I identify as who Harry would be if he were a Ravenclaw (that is, I don’t have the same personality as him, just a relatable plotline). And I swear to the gods, dying my hair black and putting on my round prescription glasses and donning robes and wand holster feel less like drag than anything else I can think of. That’s the thing – for me being neutrois means EVERYTHING feels like drag. My personal six word memoir is mostly “one long drag show: no tips”. But dressed as Harry, with maybe a striped Ravenclaw tie thrown in? That’s better. That’s maybe a little closer to me. Because my special interests are one way I express who I am. This degree of focus and enthusiasm is one of my autistic traits. I read and reread and watch and rewatch canon, I listen almost exclusively to wizard rock (fan-produced Harry Potter themed music), I collect way too much merch, I read translations of the books in Latin, Scots dialect, and other languages I want to learn, I work wizards into my school projects, I go to conventions… Harry Potter is a deep part of me. Fasciboy fits.

Flux, attached to those last three descriptors of my gender, indicates that their intensity can vary over time. As far as I can tell I’m often at least a tiny bit stargender, a tiny bit dryagender, and a tiny bit fasciboy – but at some times might not be all of them at once. And the amounts can be more than just a tiny bit; the amounts and proportions vary over time. I don’t bother noticing from day to day how much of each I am, I’m just so accustomed to fluctuations I don’t take note of them unless I consciously consider it. Maybe this could relate to alexithymia and problems with interoception and other autistic differences in reading internal states, or maybe it’s just not important to me to narrow down, I don’t know.

Okay, now the juicy ones are left, which is that I’m a contrabinary genderpunk. I made up, to the best of my knowledge, the adjective contrabinary, but genderpunk has been around for awhile. Contrabinary means my gender is in direct opposition to the gender binary system – it’s not just that it doesn’t fit comfortably within that system, it’s that it actively defies it. My contrabinary gender exists as a proclamation of war. (Okay, I’ve got nothing against noncissexist people who personally identify as a single binary gender, it’s the construct and the violence implicit to it that are the problem.) And for me genderpunk, which I use as more of a noun, represents some of the style and politics of resistance I associate with my gender. It’s a word I endeavor to embody the way I endeavor to embody “autpunk”. That is: screw the cops, stim with pride, down with cis, eat the rich, defiance not compliance, binders and glitter, spikes and patches, chew necklaces and wearable AAC. I will fuck up your normal with my autistic brain and my trans body and my special interest clothes and the way I move and the way I communicate and my scribbles over your check-one-box paperwork and my anti-cure response to your medical model and yeah, the way I spell my name.

My gender is autistic. Maybe a month from now or a year from now or a decade from now I’ll have found a different set of words to feel like home in, but for now this collection describes how these aspects of who I am define each other.

If you know someone else who is neurogender, or another gender you’ve never heard of, or simply autistic plus trans of any kind: believe them when they tell you who they are. TELL them you believe them. And then tell the world that you believe us, and so should everyone.