AAC (Augmentative and Alternative Communication), when used with intention and clarity, can dramatically improve outcomes for individuals with disabilities. Recently, I had the pleasure of connecting with Alyssa and endever*, who are AAC users, through Twitter’s #ATChat. They’ve agreed to share their thoughts in a Blog style Q and A. Their perspective and experience is something EVERYONE needs to hear. Continue reading to learn more about the ways to help support successful AAC access and use for all!
1. What would you like people to know about AAC and how it helps you?
Alyssa: Everyone uses AAC. When people are defining AAC super inclusively to make a point, we know this. Sort of. But my “AAC billboard” for Talking with Tech was AAC for everyone, no really, do it for real, because in practice most people prioritize speech over other forms of communication. That’s why there’s this nonsense about calling being better than texting, even though calling is the one that interrupts people demands immediate attention, which in a lot of other contexts would be considered rude! So:
- AAC covers all the ways we communicate instead of or in addition to speech.
- That means everyone uses AAC, and it’s mouth words not everyone uses.
- Think of AAC as a tool for life instead of as an intervention or a tool for therapy.
If we’re thinking of AAC that way, it helps me the same way it helps everyone, just more than for people who consistently find oral speech easy. That is to say, AAC is a part of my communication in a variety of contexts, and I choose the tool and strategy that best fits my needs at any given time. It’s just that sometimes, oral speech isn’t an option or is a bad option for reasons that are internal to me instead of being externally imposed.
endever*: As someone who has some speaking ability, I think people sometimes wonder why I would use AAC. There are so many reasons! Speech doesn’t come naturally to me, so it takes more concentration and effort. Growing up going to SLPs who focused on speech (and specifically, speaking with “correct” pronunciation), I ended up getting the message that I was doing things wrong, or even that who I am is wrong. It also contributed to a lifetime of going in and out of autistic burnout because I was spending so much energy on speaking – and more generally, on pretending to be neurotypical overall and attempting to function without accommodations.
Now that I use AAC it is like a giant weight has been lifted! When I communicate in a way that works better for me, social interaction isn’t as exhausting. For example, rather than going home tired the way I would after an hour or two of spoken socializing, I can spend three or four hours socializing in ASL and go home just feeling energized! The more I use AAC on any given day/week, the more capacity I have for executive function skills and sensory modulation. And my treatment providers and I have noticed that since getting formalized communication supports it seems I am better able to manage the symptoms of my co-occurring disabilities.
2.what do you feel is the biggest myth around AAC use?
endever*: To me, the biggest myth is that there are any kinds of prerequisites that should be met before someone starts using AAC. People look for certain diagnoses or “adaptive functioning” thresholds or SLP assessments of perceived verbal ability, for skills that supposedly display a readiness to communicate, and/or for IEP approval or insurance coverage. None of these is necessary! Everyone. Can. Start. Using. Dedicated. AAC. Today.
No outside assessor can adequately determine whether someone can benefit from AAC; diagnoses and testing and such can suggest its potential usefulness but in the end every communicator is the expert on their own verbal abilities and how much effort it costs them to use speech.
Other times people are identified as candidates for AAC but aren’t actually provided communication supports unless they can prove they’re “ready” – this is a human rights violation! Everyone deserves access to a robust communication system regardless of whether they can reliably match flashcards or sit still or make eye contact or et cetera.
Finally, while funding is certainly a huge barrier in the way of some of us getting access to high tech AAC, there are lots of ways to circumvent the need for insurance/IEP approval before accessing supports. Some communicators have the fine motor skills necessary to use sign language, pen/paper, whiteboards/chalkboards, etc at little to no cost. Others can type into a free text-to-speech engine like this free Android app. Others can point to images printed from the Internet (either pre-arranged into a communication board such as this emergency board or freestyle picture cards tailored to their needs). And personally, I knew my insurance was not going to consider helping me, so it was other self-advocates that taught me hacks for getting my own high tech device for as cheaply as possible: first, I got a short term loaner from my state’s disability equipment lending library to ensure it was indeed a system that would work for me. Secondly, I waited for my Ipad mini to go on sale. (I got about 30% off usual price.) Thirdly, I got discounted app store gift cards (you can often find them 15% off). And crucially, I waited for one of the usual sales on apps – these tend to come in April and/or October from most companies (I got 50% off my apps). Altogether, I think I spent about $465 – certainly that’s still out of many people’s price range, but it’s much more doable than the ~$775 my system would cost at market value.
Alyssa: The entire candidacy model is probably the biggest myth around AAC. The idea that only certain people can benefit from AAC, in this narrow range of disabled enough to need it but not to disabled to use it, is a myth. No one is too disabled to benefit from AAC. Literally, I do work on brain computer interfaces for people who can’t use eye-gaze or switches. No one is too disabled for AAC. And no one is too enabled to benefit from AAC. Some people are enabled enough that their AAC might not always be called AAC — just because it falls under AAC when someone we think of as an AAC texts, that doesn’t mean people will call it that when typically speaking teens text. But these typically speaking teens are still using AAC and they’re still intuitively feature matching their communication options with their current needs to decide to text. AAC for everyone. Do it for real. (This doesn’t mean get an SLP or an AAC specialist involved with everyone. It means consider a variety of communication methods for everyone, don’t prioritize speech over all other options for anyone, and recognize that people will generally want to use different options for different purposes.)
3. There is a myth that AAC “replaces” spoken word. Can you dispel this myth?
Alyssa: Not entirely, since one of my explicit goals for my personal AAC use is to switch from speech to AAC at the point where AAC works better than speech, not at the point where speech becomes totally impossible. I know there’s research citations that say AAC has an overall neutral to positive effect on speech, and I’ve cited them when needed, but if we’re talking about my experience? I’m explicitly and specifically trying to replace some of my speech with AAC (the speech that takes lots of effort and/or doesn’t actually let me say what I want to, but still speech a therapist would consider functional).
I technically could still talk the last time I met with my major professor, but I was having a lot of trouble explaining what I’d learned and done, and what questions I had for her. Since that was the point of the meeting, I started typing instead. AAC was replacing speech that was technically still possible, and that was a victory. (She offered to reschedule the meeting. I was the one who decided that no, I’d rather type.)
I’d rather challenge the assumption that we should care if AAC replaces speech. WHY IS THIS A BAD THING? Why is this the thing people are afraid of?
endever*: Everyone uses AAC differently, and maybe for some of us it will replace spoken words – like Alyssa said, why is that negative? But it is definitely a myth that this would be true for everybody. For me, AAC complements my spoken words. I switch between speech, a QWERTY based app, a symbols-based app, light tech supports, and sign language – sometimes within the same conversation! This flexibility is what makes full communication possible for me. Some topics, such as my special interests and things I am especially knowledgeable about, are easy enough to manage via speech, and I am often so excited to be discussing them that I like the rapidfire pace of speech in that moment! With other topics it might be easier to type my thoughts, and at times phrasing things is particularly difficult I can often compose “proper English” sentences better when constructing them via my symbols app than by typing on QWERTY. For things that are emotional, I can be most expressive in sign language. So for me AAC is truly augmentative – when I choose to speak, I am more likely to be able to do so adequately because I know AAC is truly an option for when I need it or prefer it. There is nothing inherently superior about speech compared to other forms of communication – so the emphasis should not be on making sure everyone speaks as much as possible no matter the cost, but on making sure everyone has access to as many communication methods as they need or want.
4. What is your biggest challenge around AAC use?
Alyssa: OTHER PEOPLE.
endever*: ABLEISM.
Alyssa: OTHER PEOPLE BEING ABLEIST.
But seriously, AAC use is not the primary challenge of AAC use. It can be tricky, sure, and there was a time when the technological answer to what I wanted to do involved my actual AAC app, 2 laptops, a classroom media podium, a program to project my slides, and 2 other pieces of software to project the screen from my AAC app. But as complicated as that technological solution was, I came up with the solution and implemented it myself. People thinking my needing to type means they can do things like tell me not to flap my hands (at the orientation for my PhD program!), that they shouldn’t ask me questions in class, or that they can speak over me is a problem I can’t solve myself. I can’t make people take the time and wait for me to answer on my own. That makes other people a bigger challenge.
endever*: Yup. To expand: the challenge isn’t AAC… For me, speech is the challenge – AAC is the solution. The ways in which navigating the world as an AAC user could be considered challenging are artificially created by ableism. A tiny example would be, most coffeeshops have music playing in the background (and terrible acoustics), high cashier counters, small-surface-area tables, and scarce outlets – because decisions about those spaces’ features were made with only abled people in mind. Because the needs of AAC users and other disabled folks weren’t accounted for, those coffeeshops aren’t very accessible for me. From less of an environmental design level and more of an organizational policy level, examples that have had an even bigger impact on my life have been things like universities making it hard to get AAC listed as a formal accommodation, or psychiatric hospitals completely confiscating my device. This bias towards privileging speaking people is built so deeply into our society most people don’t even notice it, but it can totally shape the daily life of an AAC user.
Alyssa: Ableism informs the decision to require people to communicate with certain offices specifically by phone, rather than with whatever communication options work best for them. The length of a conversational pause in conversation between two typically speaking people might not be a function of ableism, but expecting it of everyone, regardless of communication needs, absolutely is. People assuming that the need to teach me to use my device means they can completely ignore my right to privacy (or that I just don’t need privacy anyways because I’m disabled) is ableism. (It’d also ignore the fact that I’ve got a pretty good ideas how my systems work. I set them up myself, after all.) Even the assertion that a qualified professional must evaluate a person for their system to be appropriate is ableist — it denies the reality that disabled people are, through experience and necessity, very good at understanding our own needs and finding DIY ways to meet them. AAC isn’t magically an exception to that.
5. How does AAC use empower you?
endever*: Having access to AAC means I feel more confident that I can make myself understood in any given situation. I can convey nuance and emotion in a way that isn’t as easy in speech. I can trust that if I end up having a meltdown in public I have a chance of getting home safely. I am reinforcing to myself that my spoons (new to spoon theory? try this article) are precious and my needs are valid. And I am demonstrating to myself and others around me that it is okay to be noticeably disabled and to utilize supports that improve my quality of life.
And in an additional really literal sense of empowerment: using text relay I am finally able to call my senators and representatives! I never used to be able to manage phone calls before, even the most necessary would be overdue for weeks before I could make myself try them – because even on the best speech days the pragmatic communication demands of phone calls are difficult for me. But now that I know I can use text relay as one of my communication supports, it turns out I can just… call people! It’s amazing! Now I have more of a say in governmental policies that affect me. (It’s also worth noting that the Autistic Self-Advocacy Network recently launched a proxy caller system in which volunteers make individually-scripted phone calls to elected officials on behalf of disabled people who can’t use the phone – what a great resource for AAC users!)
Alyssa: I don’t think in terms of empowerment. Feeling empowered is meaningless and possibly a straight up lie without actual power. So, no, AAC isn’t empowerment, which is a nice word for letting people feel like they have power whether or not it’s actually true. AAC is freedom. It’s the freedom not to care if speech is working or not, because I can still communicate. I mean, I’m still going to avoid most of the single-trigger reasons that speech will give out on me, because those are things like flashing lights and loud noises that are unpleasant in and of themselves, but I don’t need to care if I’m tired after teaching class and now I can’t talk.
6. What are some ways others can support AAC use?
endever*: I guess abled people are sometimes less comfortable with having frank conversations about support needs, but truly, you can just directly ask each AAC user how best to support us! Because we might all have slightly different answers from each other. For example, I find it most respectful if my communication partners wait patiently while I type rather than interrupting or trying to talk for me, but I have friends who prefer that their support staff attempt to guess the rest of their sentences because it saves them the physical labor of using their head switches for every single word.
One task I think is important is for speaking people around me to redirect questions and comments towards me when others start talking about me as if I’m not there or can’t understand them. (For example, when tabling for my student group, if I said something using AAC the passerby was likely to direct a followup question about what I said to less obviously disabled person sitting next to me.) Sometimes this can be as simple as just refusing to answer the question, remaining silent, and turning to me expectantly as I type. This tells the other person that I am capable of saying something for myself and that my views and my communication method should be respected.
There’s probably a lot more I could say on this; maybe I’ll just link you to my blog post on the topic if you want to read more recommendations: “What I wish others knew about interacting with me as an AAC user”.
Alyssa: I’d like to second the idea of asking people what we need. I’m unusual in my preferences — under most circumstances, I’d rather not use speech generation and therefore want communication partners to read my screen. I even use an app whose main purpose is taking whatever I type and flipping it so they can read it while sitting across from me, which sadly seems not to be in the app store anymore. I’m obviously not going to tell you to read other people’s screens — most people seem not to want that — but I am going to suggest that you ask people what they want. I suspect most people have at least one preference that’s not the “usual” suggestion.
The other suggestion is not to treat AAC use as a big deal. Like, yes, wait longer for a response, don’t answer other people’s questions for me, etc. But don’t tell me how inspiring it is that I’m doing things while needing AAC. Don’t attach emotional importance to whether I’m typing or speaking. Either way, I’m just talking to you. Act like it!
Bios:
Alyssa is an Autistic* PhD student in the Interdisciplinary Neuroscience Program at the University of Rhode Island. Among other areas, they** study Augmentative and Alternative Communication, both in the form of brain computer interfaces and as used by autistic adults. Alyssa uses AAC part time as a student, teacher, and researcher.
* No, Alyssa doesn’t mean “with autism.”
** Alyssa is nonbinary and uses they/them pronouns.
You can find Alyssa on the interwebs at:
endever* corbin is a semiverbal autistic self-advocate who blogs, writes, makes crafts… and yells about xyr special interests on Twitter. Xe is involved with multiple local AAC groups offline, gives presentations about xyr experience as a part-time AAC user, is one of the mods for #AutChat, and loves hanging out with emerging communicators and their support people.
