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.

Finding AAC as a verbal/semiverbal autistic

Though I graduated from speech therapy at eleven years old – I guess they finally trained me to pronounce all my consonants “correctly” – it seems speaking still requires more energy for me than it does for most neurotypicals. For example, when I worked a job that required as much time in important conversation as it did in independent tasks, I skittered into and out of burnout for years before finally entering an intractable episode that resulted in me quitting. I just couldn’t do the job anymore; I was missing shifts constantly because I couldn’t bring myself to attempt the impossible. Part of this exhaustion was the additional difficulties of constant social interactions and multitasking, not speech specifically – and definitely the huge amount of other masking I was doing in order to try to seem “normal” – but now that I understand more about how speech works for me I can look back and see how much it was draining me.

It’s hilarious how well I subconsciously knew that speech is hard for me for the decades prior to knowing about dedicated AAC. For example, in my early twenties I fell into a habit of deliberately spending every Sunday in silence… something I could never explain an adequate reason for, yet I somehow knew that I needed the regular break. For as long as I can remember I’ve relied on handwritten notes on a regular basis for conversing with people in the same room. Now that I have a cell phone and internet access most of my relationships are maintained through texts and emails and instant messaging rather than spoken conversations. As a kid I resented and avoided my speech therapy homework – why work so hard to read aloud “properly” for fifteen minutes every day if I could absorb twice that much precious text in the same amount of time reading quietly? Then as a teenager I sought out ASL classes at community college rather than fulfill my school’s language requirement with one of their speech-based languages. All this and I still had no idea what AAC was – or even that I was autistic.

Coming into the autistic community has saved me in so many ways, and the information about AAC and implicit “permission” to use it is a big one. #AutChat is I think where I first learned that AAC is an actual thing, and I started experimenting with low tech options on my own such as laminated cards with pre-prepared sentences designed for situations I’m likely to be nonverbal in (namely, in mental health crises and especially hospital visits, but I made some day-to-day cards too). Stickman communications gave me some inspiration for this option. Then in 2017, wonderfully, I got to go to ASAN’s Autism Campus Inclusion program and – amongst amazing activist training – met my friend Saoirse and other AAC users. I learned it’s possible any AAC method might prove useful even for autistic people who have thought of themselves as verbal/speaking or semiverbal/intermittently-speaking. With my new friends I experimented with some free text to speech apps on my phone, and Saoirse generously introduced me to their symbols based program as well as their laminated letterboard.

I don’t think it’s an overstatement to say that my life changed. Even immediately: navigating the plane home it was slightly less stressful to know that if there was a problem with the TSA (I’m trans, so there’s always a problem) and I ended up in shutdown I might be able to communicate using my phone. I used text to speech to direct the cab driver, and after an initially bad reaction we chatted and they ended up asking me the name of the app because they have an autistic nephew. Finally arriving home in the wee hours, I was less tired than I expected.

Today I use a mix of speech, text to speech apps, symbols based AAC app, sign language, and pen and paper. Often I switch back and forth between methods within one conversation. I use AAC when low on spoons, when out of spoons, or when preventatively trying to conserve spoons. I use it coming out of meltdowns and shutdowns (I find the symbols based app easiest during these times). I use it in my college class and to talk to my neighbors. I use it for medical appointments and group therapy. And I use it simply because my quality of life improves when I can spend the effort it takes to speak instead on things like executive function, the self care I struggle with such as chores and eating well, and activities I enjoy.

If you are also a verbal/speaking or semiverbal/intermittently-speaking autistic person and you’re wondering if AAC might be useful for you – consider this your permission slip! You have the right to try any AAC method you think might be more comfortable than speech. Many states have lending libraries of equipment for disabled people to test out to help them decide whether to invest in a significant purchase – if the less robust free apps available for your existing device aren’t cutting it and you want to try out something fancier, look for a library like this so you can see how it works for you before deciding whether to buy (this is the program I used in Oregon.) And if you find something you like? Whether it’s pen and paper, a small whiteboard, sign language, text messaging, text-to-speech, symbols-based AAC – if you prefer it for any reason, then yes, AAC is for you! You don’t need to prove a functioning label (ick) or a perceivable lack of verbal ability or even a formal diagnosis to somehow qualify to use a method of communication that you benefit from. Don’t listen to anyone telling you forcing yourself to speak is better: there is absolutely nothing superior about speech compared to other forms of communication, it’s just that because it happens to work for abled people it has become the societally normed benchmark everyone is supposed to aim for.

Happy Autistics Speaking Day!

I don’t actually speak in the literal sense all that often; I use a speech generating device and sign language to help me communicate more easily. And I love typing, writing, texting, tweeting. I’ve been thinking about starting a blog for awhile, so this seemed like the perfect day to begin.

As a multiply marginalized person, I know that choosing to continue to exist in this world is an act of rebellion. What I’d like to add to that ongoing rebellion, now, is a more dedicated space for sharing my truths. I’m on Twitter all the time, but any of my more relevant thoughts there are mixed in with nonsensical livetweeting of my favorite shows and yelling about out-of-context wizard rock. And I write #ownvoices novels full of queer neurodivergent characters, but thus far no one reads those. So I want to consolidate my rebellion words here, in a format I can direct others to if they might be interested in what I have to say.

So what do I have to say? I exist. I exist in defiance of normal. I do not fit expectations, yet I and people like me have inherent worth anyway. Maybe we do not look or sound or think or communicate or move or dress or act the way typical people do. Too often this prompts typical people to dismiss us, and their world has long since been built to systematically exclude us. I have a lot to say about that.

So who am I? A version of the existing summary found in an intro thread on my Twitter will pretty much cover it:

I’m endever*! Yes, lowercase and with a star. My pronouns are they/them/theirs/themself or xe/xem/xyrs/xemself.

I’m trans! Lots of words apply: neuro-enby neutrois stargender/dryagender/fasciboy-flux contrabinary genderpunk mostly sums it up. 😀

I’m queer! Acevague/arovague; sexual/romantic/platonic attractions usually governed by gender noncomformity, queerness, and punkness.

I’m autistic! Yes identity-first language, no functioning labels, yes stimming unapologetically, no ABA. I’m somewhat faceblind, synaesthetic, semiverbal, and use AAC part-time.

I’m otherwise disabled! I self-summarize with the positively reclaimed “crazy”, and also get frequent migraines. I’m on meds, in therapy, in and out of the hospital, and chronically tired of ableism.

I will yell about ableism! Systemic & interpersonal, ideological & linguistic. And I will yell about other oppressions! I’m forever learning intersectional anti-oppressive activism and I hope you are too. If I’m messing up in an area I hold privilege, I want to hear about it. If you have the desire and spoons, feel welcome to contact me. And if I’m not giving content warnings you need, please let me know. I can get better at it.

I’m low-income – I live on disability benefits and have to spend a lot of my time trying to access services/supports. I’m most culturally comfortable with other poor people.

I’m an unschooler! I value learning over formal education/grades. I’m against compulsory school and all for investing in libraries. I volunteer at the public library – I’m unable to work an actual job right now but usually pull off a couple hours/week of pulling requested items.

Libraries are basically a special interest for me. My main, giant special interest is Harry Potter, but often whatever TV show I’m rewatching also qualifies.

I’m a writer! Historically a poet, I’ve now written two novels and have started working on the last in the trilogy. I also make crafts and would love to send some to you! See this thread on my Twitter for info on the buttons I have available and how to request them: buttons!

That’s me! So expect this blog to be about any and all of that. (Yes, probably including some Harry Potter stuff here and there.) There are times I like this life of mine and times that I very don’t, but in either case I find value in the sharing of it. I believe that friendship and compassion and relationship-building and listening and truth-telling are important ways to change the world. Maybe, just maybe, I can do a little bit of that changing here.