Well, another poem I guess

I know I said I don’t really plan on posting poetry to this blog, but a dear friend asked me to write some, and the content is relevant – so, here you go!

people think i spoke for all those years
even correctly, for some of them.
so how can i explain
that it is only now i have a voice?
true, i eked out words here and there
that were right and true
paper, journals, signs, word processor, instant messenger, emails, texts…
i even spent days in silence –
perhaps a whiteboard note or two,
scratch paper for the barista (soy latte, 16 ounces) –
but i didn’t understand.
how can i tell you
whose brain is connected to your mouth
that my fingers are more sure than my lips?
and that now that i know myself
my words are strengthened, more confident, more proud?
to me, quieter than i wanted for all those years,
being able to press play feels like a privilege.
but what i wish for everyone
growing up unusual
is a human right:
words any way you want them
all the ways you want them
no explanation necessary
at all.
my words my ways
is a promise to myself
and a hope for everyone else atypical
in this world that doesn’t listen.
may we all have loud hands.

[The final line is a deliberate reference to ASAN’s “Loud Hands” anthology, please check it out.]

AAC for autistics 101: part two!

You can read Part 1 of this post here, focusing on assessing autistic people for AAC supports. This second part gives tips on interacting with those of us who already use AAC and helping advocate with us for communication rights.

Whatever AAC supports you and the autistic person have selected, it’s your job to model as constantly and thoroughly as you can! If the only input nonspeaking autistics are getting from people around us is speech, at best we are going to develop self esteem issues from the implicit message that our communication isn’t normal, or at worst we will never learn to use our AAC supports at all. Please teach our caregivers how to use our AAC supports so we are getting consistent input in a useful modality throughout the day and across every setting.

Along with modeling, please provide us with as much vocabulary as possible as early as possible! The AAC field has historically often fixated on teaching requesting, but every autistic person has the right to all communicative functions. This includes refusal! That is actually a really important thing to introduce along with other vocabulary for self-advocacy; being able to say no is important for our safety and self-determination. As another example, if you think we are not capable of commenting on preferences or sharing opinions, and thus don’t give us the vocabulary, you have made us automatically and ongoingly not capable of commenting on preferences or sharing opinions! And please make sure from the outset autistic communicators have vocabulary for talking about our special interests and favorite objects; we are more likely to want to learn our AAC method if we can use it for conversations that excite us.

As early or often as possible try to teach us how to customize our devices and add vocabulary for ourselves. Don’t see yourselves or our caregivers as the sole moderators of our access to communication. And don’t overstep your bounds in assessing how we use our devices. Many programs have a history or tracking feature that can help you analyze what words we’re using, but looking at this without our consent is a privacy violation.

Some other thoughts on working with AAC users… Never take away our device (or light tech supports)! They should always be within reach. I have had my device taken away and it is such a helpless feeling. Even if we are using our device for what seems to you to be non-communicative, for example echolalia or vocal stimming, and even if it’s getting really really annoying, we still deserve access. You probably sometimes sing along to the radio, which is essentially socially acceptable echolalia/vocal stimming, but no one tapes your mouth shut. Give us the same autonomy. The one exception to this is if the needed objects might get damaged, for example in a swimming pool. If this is the case try to get our consent before just taking it away, and have a backup like a small laminated communication board or at least a system for answering yes and no questions while in that environment.

Ask each AAC user directly how we prefer to interact. Some of us want communication partners to be silent and patient while we type, other people would appreciate you trying to guess the ends of our sentences so that it is less work for us than having to spell everything out. We might like a device set to speak each letter or word as we type it or we might want to compose messages silently and play the whole thought at the end. Some of us want to keep our screens private and express ourselves with speech generation, other people would rather you read along as we type. No matter what an AAC user prefers along these lines, use your relative position of power as a professional to teach peers and caregivers how to interact with us respectfully. Make sure we are invited to our own IEP meetings and other services planning meetings so we can express our own goals for our communication, and make sure people talk directly to us rather than to our caregivers and assistants. I have had doctors ask my support person questions about me while I was sitting right there, it’s really patronizing.

Another thing to consider is helping us use our AAC system to connect to other people and places, not just face to face. We may want to make phone calls – can we use text relay for that, or put our devices on speakerphone? Can our devices access emails and social media so that we can copy and paste the sentences we write using symbols directly into other apps? This is important not just for our social lives but also for self advocacy. For example, we might want to call a hotline to discuss our rights in benefits programs. We deserve to contact our senators and representatives about policies that affect us, and most autistic adults have the right to vote even if we are under guardianship. Think about whether our AAC supports will give us access to these activities that are part of living a full life.

Okay, that’s the text of the presentation I delivered to future SLPs! As I give more presentations like this I will probably refine and add and cut and edit, so maybe someday I’ll update this post, but for now this is a good summary of what I’d say to professionals fairly new to AAC for autistic people. Please feel free to pass it along to anyone you think might be interested!

Are you an autistic who uses AAC? Please let me know below what else you would want to tell people at an intro level by commenting below.

AAC for autistics 101

Part One: Assessment

I gave a presentation about AAC in a Speech/Hearing Sciences class on autism last week, and I want to share the text with you as a sort of “Intro to AAC” geared mostly towards students and professionals relatively new to the subject. That said, there’s probably going to be good info in here for families too as well as some core advocacy concepts AAC users might be interested in. (Warning, if you’ve read my blog before you may see some duplication of ideas, the goal with this two-part post is just to get all the sort of 101 info from my presentation into a consolidated online resource.) This week I’ll post the portion about assessing autistic people for AAC supports, and then next week will be tips on working with AAC users and helping advocate with us for communication rights.

As for assessment, hopefully you have already heard the phrase “presume competence”. This is a key principle in the AAC field. Another phrase I like that gets at the same thing is, “an absence of evidence is not evidence of absence”. So just because you have a child or adult in front of you who hasn’t yet demonstrated an ability to communicate, that doesn’t mean the ability is not there – it might just mean that they haven’t been offered the right supports yet. Think back to the social model of disability, and until proven otherwise assume that an autistic person’s lack of communication is a fault in the environment rather than a fault in their brain. There is nothing inherently superior about speech compared to other communication methods, so there’s no reason you should hold out for someone to develop speech – just provide AAC modeling early and constantly and see what happens. (Modeling means using the chosen AAC method for your part of the conversation so that we have an example of how to use it, the way speaking children hear speech around them all day to learn from.) The autistic person you’re working with may eventually develop speech or they may not, but with AAC at least they have a chance of communicating in the meantime. That’s a human right for people of every age and every neurotype.

There is a flip side to this, and it’s when you’re assessing an autistic person who does use speech, but perhaps has articulation or pragmatic impairments. Or maybe their speech even seems completely adequate to you – but please don’t assume that it is adequate to them internally! Verbal and semiverbal autistic people might very much benefit from AAC. An autistic friend who studies neuroscience, Alyssa Hillary Zisk, recently published an article on this. For many of us AAC is easier on our overall motor planning demands, or we have better fine motor control than oral motor control, or it is easier to work with visuals than auditory words, or it just saves us energy that would better be directed towards other areas like executive function skills or sensory modulation. We may not be expressing quite what we’re really trying to say when we have to use speech, or we may be unnecessarily exhausted by it. So I would recommend that any autistic person you encounter in your work should be considered for AAC supports. And actually, I’ll extend that to anyone presenting to a speech therapist in general, because someone who struggles with communication might not have an accurate diagnosis yet.

How do you decide on an AAC method? Well, do all the formal assessments and checklists you want, but if the person has already demonstrated any ability to understand choices and make decisions, I’d suggest also just showing them the various options and directly asking what they want to try! For people who haven’t yet had the opportunity to demonstrate an ability to understand choices and make decisions, start modeling at least one AAC method, while pairing with speech, and see what the person shows an interest in. If people around them don’t display a bias towards a specific communication method, then the autistic person will show you their preference by trying out the one that works best for them.

In choosing an AAC method to trial it’s important to consider communicators’ strengths versus impairments in motor skills as well as sensory modalities – alongside what is going to be most effective for their environment. For example, if someone’s family refuses to learn sign language, it might not be a good option. Of course, if it’s what the communicator prefers, you should be pressing their caregivers to support that. Considering cultural competence is also important – for example, a child from an immigrant family might prefer a text to speech device that offers an accent that fits their heritage rather than a device that only has white American voices. And gender variance is more common in autistic people than the general public, so never make an assumption about which gender coded voice a communicator will prefer.

Okay, there’s my thoughts on assessment, stay tuned for next week’s post on working with AAC users!

Letter of grievance re: confiscated AAC

Today’s blog post is a version of the letter I sent to two different hospitals after having my communication device taken away on their psych units (I just edited for identifying details mostly). I know some lovely speech therapists and AT specialists who generously co-signed with me, which I think added to the impact, but I hope that this sample letter will be useful for someone as an individual even if you don’t know any professionals who can back you up. Please feel free to use my wording or adapt it to fit your individual situation if you are thinking of filing a grievance somewhere about a similar experience! And honestly feel free to contact me if you want someone to look over your version or otherwise bounce ideas off of if you have had your communication supports taken away in any setting and want to file a grievance, I’d be happy to try to help.

Here’s what I wrote!

“Dear Patient Relations,

We are writing to express concern about the policies at your hospital that disadvantage patients with complex communication needs (CCN) and other assistive technology (AT) requirements.

At this patient’s last visit, their communication device was confiscated for the duration of their stay, preventing them from adequately getting their needs met and discussing their symptoms, treatments, and basic needs to staff. It is terrifying and frustrating to be in the midst of an autistic meltdown or psychiatric crisis and not be given the tools needed to ask for help. Expecting patients in this situation to substitute pen and paper for their usual communication device is not an adequate replacement; while some people who use AAC (augmentative and alternative communication) are capable of utilizing this surrogate communication method, others of us need options such as selecting pictures that represent whole words, or using sign language. Some of us need access to a variety of these options at different times, and we may use speech part-time as well, depending on our abilities at any given point. These intermittent abilities should not be used to invalidate our need for all of our usual options to be available to us at all times, as the individual communicator is the only one who knows what format we require at the moment. The governmental guidance on meeting the Americans with Disabilities Act’s legal requirements for providing communication accommodations specifies, “when choosing an aid or service, Title II entities are required to give primary consideration to the choice of aid or service requested by the person who has a communication disability”.

In this patient’s experience, staff defined their assistive device as a “personal belonging” subject to the same rules as clothing, books, and technology that doesn’t serve as AAC. Yet eyeglasses, another form of AT, were not subjected to this definition – and we assume hearing aids, wheelchairs, and additional AT would also be permitted here. Targeting communication devices as disallowed in this treatment environment is unfair to many patients with developmental disabilities, speech/communication disabilities, and hearing disabilities.

Staff gave multiple excuses for disallowing this patient’s communication device, and we would like to address each one.

– Device has a strap that could be used as a dangerous ligature: Strap is removable.

– Device has a camera function: Tape can be placed over the lens and the patient required to sign a contract stating that they won’t use the camera function and understand it will be confiscated if they were to break the contract. Although that solution should assuage your concerns, we’d like to point out the ban on all devices with cameras in this unit is already inherently discriminatory to mental health patients. Patients in physical health units are allowed their devices that have cameras, even if they are walking around the hallways or otherwise in viewing distance of additional patients. The idea that being filmed on a psychiatric unit would be inherently more shameful or damaging reinforces stigma against mentally ill people. It’s greatly concerning that mental health patients are being treated by people who buy into that stigma.

– Device might get damaged: Again, so might glasses, hearing aids, wheelchairs, or other AT that you allow. Additionally, patient could sign a contract taking full financial responsibility for any risk. You might not realize that our devices are at high risk of damage in our outside lives too – even just rainy weather requires protection – so many of us choose extremely resilient cases and harnesses for our devices that protect them adequately. It should be solely our decision whether we are willing to risk keeping it with us in every area of your hospital.

When the solutions above are not adequate for a certain brand of communication device, the hospital needs to provide an equitable alternative. A speech pathologist used to working in hospital settings should be consulted to assess the patient’s needs and provide an adequate substitute for their usual communication method. D/deaf patients and other communicators who use sign language should have access to an interpreter at all times. We highly recommend that you have a laminated letterboard and a picture board designed for acute psychiatric settings on the unit, to serve the needs of any patients who come in with a need for AAC but don’t have their own device or light tech communication supports with them. And it should be noted that the compromise decision offered at this patient’s last visit of being allowed to use their device only when at the nurses’ station and only when staff had time is not adequate. You do not place duct tape over the mouths of other patients anytime they’re not at the nurses’ station. Meanwhile, the fact that that unfair compromise was offered only after the patient was severely distressed by having to advocate for themself on paper is troubling. They did their best to communicate the above points via the limited communication method they were forced to use, repeatedly citing the ADA and requesting a speech therapist consult, but ended up in complete meltdown before even the compromise was reached. This is the opposite of psychiatric stabilization you are endeavoring to provide.

We hope you will consider all these points carefully and decide to:

1) Change your policy to allow all assistive technology (AT) everywhere in your hospital

2) Carefully communicate this policy to all staff so that patients are no longer required to spend so much energy advocating for their rights while in the midst of a crisis. As this local patient is relatively young with a chronic mental illness, it is somewhat likely they may need to visit your hospital again, and we would really appreciate it if you could send a copy of any updated policy to us for them to bring with them in the future to easily demonstrate to staff that their communication device is allowed.

If you would like assistance in acquiring a basic laminated letter board and picture board for your facility, we are happy to help.

Thank you for your consideration,

[signature]”

…Results from this letter was positive from both hospitals! One said my device will be allowed in the future and they are making sure all their emergency rooms across their hospital system have communication boards, and the other said my device will be allowed in the future (with staff supervision – meh, but still better) and that they have done staff training as a result of my grievance.

Have you had your communication supports taken away before (in any setting)? Please feel free to leave a comment below. And like I said, you’re welcome to contact me via this site or track me down on Twitter if you have a similar situation and hopefully I can offer some support as a fellow self-advocate who’s been there.

We deserve access to AAC!

Para leer este artículo en español, pulse here.

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.

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.

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.