Communication access and ableism

Adapted from a presentation I gave to college students today.

Content warnings: eugenics, abuse, coronavirus

Thinking about communication accessibility is important because access barriers are a huge part of disabled people’s day to day life, and it’s exhausting to usually be the only one addressing them. What shapes access barriers is structural and interpersonal ableism. Ableism demands all day every day that we as disabled people conform to the kinds of communication that are most convenient for abled people rather than those which are even slightly accessible to us. Not only that, it demands that the content of what we communicate is docile and submissive; we’re not supposed to stand up for our rights, disagree with mainstream culture, refuse unsolicited help, or self advocate. Let me give some pertinent examples.

Deaf and Hard of Hearing people have had to petition countless local governments around the world lately to add sign language interpretation to their press conferences and health advisories about coronavirus. At the level of government-provided information and mass media, this should not be seen as a bonus unplanned for accommodation that might be arranged upon request, but as a baseline accessibility measure required to meet the needs of the public at large. If not implemented from the outset, disabled lives are threatened due to lack of the same information that abled people have free access to. Similarly, it’s disabled run organizations and individuals that have taken it upon themselves to create cognitively accessible information about Covid – summarizing official briefings in plain language, adding illustrations and glossaries, and creating social stories for fellow autistic people devastated by the sudden change in daily routine. We do all this in part because we know that we are in that much more danger if we get sick. Even if we’re not personally immuno-compromised or dealing with underlying conditions that make the virus particularly dangerous to our bodies, we know that disabled lives are seen as less valuable, to the extent that many jurisdictions make decisions about how to ration medical treatment such as ventilators based on the presence of other disabilities and how an outsider estimates the impact of disability on subjective quality of life. This means that disabled people, including people who are labeled unable to communicate and people with intellectual disabilities, can be sacrificed in favor of saving patients without pre-existing disabilities. This is one example of modern day eugenics. So when people fight for communication access, it is not about mere convenience or political correctness. It is a matter of life and death.

The federal government has released guidance on how to enact the Americans with Disabilities Act in regards to communication accommodations, which really, the law should be seen as the bare minimum for making something accessible. That guidance states that primary consideration of which communication accommodation is provided should be the disabled person’s preference, which brings us around to the idea of communicative choice. It should be up to each disabled person to choose communication methods that work best for us in the moment. This is often not going to look the same as abled communication, and it’s not necessarily even going to look the same from day to day. I switch regularly between AAC that uses spelling versus AAC that uses picture symbols, high tech AAC versus light tech AAC, sign language, plus a bit of speech. I remember noticing one day a few weeks ago, it’s only noon and I’ve already used five forms of AAC this morning. I’m proud of being a multimodal communicator. Have you ever been in the middle of writing an email when the phone rings, and then while you’re talking your roommate comes over to ask something and you hold up a hand to them to mean wait, i’m on the phone? See, you’re a multimodal communicator too, but if you’re abled people probably don’t consider that anything but normal. Yet if people are used to me speaking, they are surprised I often need AAC. If they’re used to me using my communication device, they are surprised I might prefer a sign language interpreter. When you’re disabled your methods of communication are under endless scrutiny, skepticism, and ableist expectations.

So what’s important is to support disabled people’s communication by giving us as many options as possible, and validate whatever method we choose at any given moment. This means giving Deaf and Hard of Hearing children access to sign language and Deaf culture from day one rather than pushing oralism, and giving neurodivergent children access to AAC from the very first indication of a speech delay rather than pushing speech skills. It means adding image descriptions to your social media posts, whether or not you happen to know that a blind person will read them. It means celebrating autistic people’s echolalia, and infodumping about our special interests, and stimming, as important and valid forms of communication. And sometimes it might mean having conversations that aren’t totally comfortable for you. It’s more respectful for you to ditch your self consciousness and just go ahead and ask us how you can best support our individual communication, rather than being a conversation partner who finishes sentences for us, changes the subject while we’re typing, reads over our shoulders, touches our communication devices, or demands details about our medical history, without having asked whether any of that is okay or helpful for us. Sometimes we will say things that make you feel uncomfortable too. In autistic culture we are often upfront and direct about how we talk about things, this isn’t seen as rude but just as normal for our kind of brain. We might not know how to translate it into the kinds of phrasing that neurotypicals expect, or we may have too much going on at the moment to be able to spend the energy doing so.

Other times disabled people of any neurotype can find themselves forced to be rude in order to be listened to! When you are blind and people grab you without consent, forcing you to walk in the direction they think is helpful – or you use a mobility device and people take it upon themselves to move you around like furniture, despite your protests – these violations of bodily integrity are what is truly rude, and confronting them is a kind of self advocacy that abled people don’t often want to hear. When they’ve invested their ego in the idea that they help the disabled, that they use their superiority over us to make decisions in our best interests, they think us saying “don’t do that” or “I don’t need your help” or “leave me alone” is inappropriate or ungrateful. Let alone if we say those things without speech, at which point they might not consider it communication at all. It might be written off as just a behavior or a symptom, not a message that deserves consideration. Even within forms of AAC, sometimes speaking people privilege the ones that come closest to typical speech. They’d rather me use a device with a QWERTY keyboard and expressive voice output to compose full sentences in proper English, whereas if what I’m able to do that day is just point to hard copy picture symbols silently, a verb here, a noun there – somehow that makes me less of a person. But all communication should be honored, all people should be respected. Saying no, whether that’s with mouth words or some other way, is an important communicative function. Noncompliance and refusal are valuable social skills that help us set boundaries and protect us from the abuse we as disabled people are so likely to be subjected to.

In summary, we deserve to be our own decision makers about how we communicate and the content of our messages. Existing ableist structures and ideals are not a legitimate reason to withhold information from us, refuse to provide us with communication accommodations, or dismiss our messages. Communication access is a human right that is frequently denied to disabled people, and if you’re abled part of your job as an ally/accomplice is to help us fight for that access.

AAC is not just for requesting! Creative ways to use AAC

I think too often professionals and caregivers of AAC users only focus on using AAC – especially symbols-based systems – for communicative functions such as requesting. That really limits how much can actually be done with these powerful apps! I use my symbols-based AAC (Proloquo2Go) in a much wider variety of ways; here’s some examples:

Picture schedule: Why buy a separate set of physical or electronic event/task images when you already have symbols based AAC? AAC users or our support people can create a page to edit each night for the upcoming day, or create folders for the sequences of steps in complicated activities like cooking. Many of us who struggle with transitions and executive dysfunction can benefit from visual supports like this.

Flashcards: By creating a folder of vocabulary we’re trying to learn in a second language, setting the buttons to show image only, and programming the speak field to feature the foreign word, AAC users can use their symbols-based AAC system as a flashcards studying app. This is especially useful for learners like me who do best in immersion settings – other flashcards and picture dictionaries are always mixing in English, which can make it harder to learn the new language. (Please note that this idea should be used only for self-directed learners, not for forcing emerging communicators to go through drills to prove their competence.)

Navigate meltdowns: Some AAC users who usually use text-to-speech on a QWERTY keyboard may find that they lose this ability during meltdowns and shutdowns – but that they may still be able to use a symbols-based system during these times. One major reason I like having Proloquo2Go as well as Proloquo4Text (which is QWERTY-based) is that I can switch to symbols when necessary. Last year I had to go to class in the midst of this situation, and it turned out my classmate was totally cool with me composing messages via images to say things like “have meltdown hard communicate”. Normally I’d be able to type on QWERTY more complex sentences like “I just had a meltdown and am still having a hard time communicating”, but in that moment if it weren’t for a symbols-based program I wouldn’t have been able to interact at all.

Write poetry: AAC users can select images that evoke a scene and then use the words to write a poem describing the feeling it gives us. I especially enjoy poetry because poets are given more leeway to break the rules of “proper English”, something that AAC users are often discouraged from doing. But communication is about conveying an idea, not about grammar and syntax and spelling and pronunciation! If we can get our message across using a haphazard series of nouns and verbs, that is still valid communication. Poetry is a venue where this kind of creative use of words can be valued.

Write prose: AAC users can write school assignments or even extracurricular fiction by composing their sentences in a symbols-based app and then copy and pasting into a word processor. I have written sections of my novels this way!

Post to social media/emails: Similarly, by composing a message in our symbol-based apps and then copy and pasting to social media or email, AAC users can participate in online communities using the kind of communication we prefer. I sometimes use my symbols-based app to livetweet my favorite TV shows; it’s a great way to share my special interests with others and get more familiar with the app.

Give presentations: AAC users can program our scripts into a series of buttons and practice by running a stopwatch to make sure our words play in the desired amount of time. This could be for a school project, an open mic night, advocating for ourselves at an IEP meeting, or meeting with our senators on disability rights issues. I regularly use my device to give presentations about autism, disability, accessibility, and AAC.

Special interest infodump: Autistic AAC users like me might enjoy utilizing the way symbols-based systems organize categories and folders to store information about our special interests. I have folders full of hundreds of Harry Potter characters, spells, et cetera, so that I can talk about the canon I love with other fans.

Vocal stimming and echolalia: Many autistic people like me use vocal stimming and echolalia to modulate our sensory environment and communicate. This shouldn’t be limited to speaking people; it’s a totally valid way to use AAC! Don’t discourage us from “playing” with our systems – having the freedom to press buttons over and over, to use buttons that repeat phrases from our favorite movies, or to play buttons at random as experimentation can encourage emerging communicators to feel comfortable using AAC.

Prompt speech: This isn’t commonly understood, but some of us can speak words aloud only when they are in front of us visually. So we can use an AAC system to compose what we want to say, and once we have selected the right buttons we may be able to read the screen aloud rather than using our device’s synthesized speech. Please don’t pressure us to do this, and don’t expect us to read a message you composed for us! This is just one more tool that may give us additional agency over our communication.

I hope you got some new ideas from this list that you can try out and share with other AAC users! If you have discovered more creative uses for your own AAC, please add your thoughts in a comment below.

Nerding out on AAC: what is it like to switch grid sizes/layouts?

A frequent conversation in AAC communities for people who use symbols-based apps and their caregivers is: what grid size should I use? Is it okay to change grid size/layout later? Well, in the last week or two I changed my symbols-based app around significantly, and want to talk about why I did so and what it’s been like to transition.

First, some basics: I’ve been using Proloquo2Go for a couple of years now. This highly customizable app (for IOS only, unfortunately) features buttons with picture symbols for full words as well as a QWERTY typing view that can be switched to as needed. Due to my sensory profile (strong fine motor skills, somewhat easily overwhelmed visual processing, and difficult hand eye coordination) I’d come to use Proloquo2Go’s symbols view largely based on motor plan rather than by visually scanning for the words I wanted – that is, I had built a muscle memory of where many words were located on each screen so that my hand would automatically move to the right area, similar to how I type on QWERTY. I had this decently down for common words, albeit with plenty of near-misses on the buttons I was aiming for due to the hand-eye coordination problem, and of course was still relying on visually scanning (which takes me longer) for less frequently used words (“fringe vocabulary”).

So if having built up this muscle memory was how I navigated the app as well as I did, why would I want to switch grid size/layout?

I had toyed with the idea of changing the layout of many of my fringe pages for months, because I’d long since noticed that I almost always habitually went back to the “home” screen for core vocab rather than checking whether any given fringe folder’s template included the core word I was looking for. This meant that the templates used in most core folders were just taking up space, pushing lots of fringe words to the second layer of that folder – meaning it took an extra button press to reach those words. If I was going to automatically go back to the home screen to use core vocab anyway, why keep the same words in the fringe folders? But on the other hand, was it worth re-learning where my favorite fringe words sat on the screen once core words were removed?

I’d also noticed that the default templates (and honestly I’m not sure why this seems like a good idea to anybody) both vary which words are available on different kinds of pages and occasionally alter the location of core words compared to the home screen. This means that I couldn’t rely on motor planning to inform me where to find core words when on one of the fringe pages, which is probably what built my habit of returning to home each time for core words in the first place. While using fringe page templates like this might speed up communication for many people because their ability to visually scan for core words on the page they’re already on prevents them from needing to tap back to home, it was just slowing me down by pushing fringe words “further away” (more button presses) from the home screen. But learning how to edit templates somehow seemed like a daunting task, and I wasn’t sure if it was worth it.

The event that prompted me to go ahead and change all this stuff was that I’d offered to build a core board for a Facebook acquaintance to print out and introduce to their little one while they were waiting for the usual April sale on the app. I encouraged them, as is the general recommendation, to request whatever grid size they thought was the most buttons their kiddo was going to be able to handle given the prospective screen size and any visual impairments or other constraints. They chose 8×14, one of the standard options. I remembered considering this grid size when I was initially setting up my app, but at the time I felt visually overwhelmed trying to contemplate navigating anything bigger than 7×11 on my Ipad Mini, so I had set up my own user profile as 7×11 and used it ever since. I created a quick new user profile for 8×14 in order to create this other family’s core board, and after editing for a few minutes I realized… this is not overwhelming to me. 

I think something about having a couple years to get used to symbols-based/grid-based AAC – and this app specifically – really made a difference in how visually overwhelming a bigger grid size felt. So I quickly did the calculations: 35 more buttons per page? Even 35 more buttons just on the home screen would probably speed up communication. But I just wasn’t sure if it was a good idea to try to get used to a new layout.

And that’s when I remembered the other changes I’d been thinking of making – removing the templates from many fringe pages; editing the standard templates. If I was going to make changes, I really ought to make changes, right? I knew a major reason for the common recommendation of starting with as big a grid size as possible is that changing the layout of what-word-is-where later can be extremely difficult for an AAC user to adjust to, especially those of us that do rely on a motor plan more than visual scanning. Would making these changes be like learning AAC from scratch?

I took a few days’ worth of deep breaths and dived in, figuring, 1) I enjoy fiddling with communication boards no matter what, so even hours of rearranging and editing would probably just register as “ooh fun!”, and 2) if I put in a lot of effort but it ended up impossible to get used to, it’s not like my old user profile would have disappeared. (Kudos to Assistiveware for letting me design multiple user profiles on one app/device!) I followed through on all the changes I was thinking might speed up my communication – bigger grid size, removing templates from many fringe pages, and editing the standard templates to better match the home screen and each other. I also did a lot more color coding and subtle customization like varied outline widths to make certain buttons stand out to me more.

The results? Almost none of my fringe folders necessitate second layers – the words (or subfolders) I need are all on the first screen of each. For my People, Places, and Verbs folders, I pulled my most commonly used words from each of their subfolders out onto the main page. (For example, now I can find the words “friend” and “doctor” under just Home>People rather than Home>People>Friends and Home>People>Healthcare.) My Home screen fits not only more words on it now but more folders, so I don’t have to navigate to the second layer of Home as frequently either. Let’s look at how this affects sentence construction: on my new layout, the sentence “yesterday I had coffee with my friends [O] and [Z], we practiced more sign language and talked about our plans for next week” requires 49 button presses (average 2.1 per word), but on my old layout, it requires 58 (2.5 per word). If that sample is representative, it adds up! Writing 2000 words of my novel (I like composing on my symbols app and then copy and pasting into Google Docs) will take 4200 button presses on my new layout instead of 5000. Additionally, four of the necessary buttons for this example sentence have added color coding in the new layout due to being words I use frequently, which I expect will help me navigate to them (and buttons relative to them) more quickly. After editing templates, none of the core words from the home screen are located somewhere different (if present) in other folders, so I can more consistently rely on the new motor plan I’m building.

It is not without difficulty to switch to a new layout, and if someone has even more trouble with cognitive transitions than I do, it’s possible there’s no number of decreased button presses that would be worth the learning curve. But for me, this feels like a really positive change. I’ve been making a point to practice the new layout just like I made a point to practice the app when I very first got it. Reading aloud to myself, answering practice prompts in Facebook groups for AAC users, using Proloquo2Go to compose texts and Tweets, and writing other documents using symbols are all helping orient me to the new layout. I kept as many things in the same relative place as possible given the task at hand – like, the home screen doesn’t look like it went through a catastrophic reorganization compared to what it was before, it just has more than it had before. More personalized color coding than is the app’s default seems to be slightly improving my ability to visually scan for fringe words’ new locations. Wonderfully, this grid size even leaves me room to grow – many fringe folders now have one or two dozen blank spaces I can add vocab to as I find myself without any given word mid-thought, rather than knowing any additions would just be buried on the second layer.

Proloquo2Go’s default setup does work very efficiently for some people, but its customizability is its true strength – and the fact that the app allows for me to easily make all these changes is a major reason I am loyal to it. What I’d say to anyone considering changing their own grid size or app layout is: talk to other people who have done it (this Facebook group is a good resource), and make lists of what you expect will be the pros and cons… but, when in doubt? If inefficiencies or possible changes have been nagging you for awhile, then I’d say just go for it. Make sure you have a backup of your old layout safely tucked away, set aside plenty of time and energy for editing/customization and practice, and see what happens!

If you’re a professional or caregiver considering changing another person’s app – ask them directly what they think. Explain what you understand to be the pros and cons to be in language they understand, and phrase follow up questions in a way they are able to answer (for example multiple choice or yes/no if open-ended is more difficult for them). If they are excited about a reorganization, wait until you’ve basically finished tinkering with the new layout before introducing it to them, and ask them what they think/if they want any changes. After that, do your modeling on the new layout but make sure they have access to the old layout anytime they want to switch back to it – their ability to communicate in the moment should never be frustrated by trying to learn a new layout for the long-term.

Have you switched your AAC (symbols app, letterboard, whatever) to a new grid size or layout before? What was it like? Comment below!

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,

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…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.