How to talk about AAC and AAC users (according to them)

AAC basics AAC awareness AAC survey

19 minute read
Updated October 21, 2024

Words are the building blocks of language, and language is how we tell stories. It’s how we tell each other who we are. Words can shape perceptions—calling AAC a “clinical practice” paints a very different picture from saying AAC is “all the ways we communicate.”

We, Alyssa Hillary Zisk and Lily Konyn, know which of these AAC definitions we prefer, but we’re only two AAC users. Our language preferences matter when people talk about us. But if we want to know how to talk about AAC users as a group, it’s not enough to know what we like. It’s not even enough to know what our friends like. We need to know what a lot of people prefer.

So we asked.

AAC terminology survey

In early 2022, AssistiveWare ran an online survey, asking people with a variety of relationships to AAC what they thought about 119 different words and phrases. The first research of its kind, our survey resonated deeply with the community—in total 556 people participated.

We reached out through many channels to make sure the respondents in the survey represented the community at large. We picked the terms in the survey based on the language we saw in AAC-focused social media groups, advocacy organizations, and academic publications.

One out of every three people who took the survey uses AAC. Of these, nearly a fifth (18%) do not use spoken words. Unless we say otherwise, this blog is talking about the perspectives of the 169 participants who use AAC. A future blog post will take a closer look at the perspectives of people who do not use AAC themselves.

AAC user opinions at a glance

Do say:

✅ AAC user

✅ People who use AAC

✅ AAC device. Device, iPad, or tablet are fine too.

✅ Nonspeaking when referring to nonspeaking people as a group.

✅ When speaking with one person, ask what they prefer.

✅ People (when talking about groups of people). Not clients, consumers, or patients.

Don’t use:

❌ Deficit-based terminology, such as people with highly unintelligible speech, or speech deficit.

❌ Acronyms, except for AAC itself.

Overview of AAC users’ perspectives:

	Unfamiliar terms More than 20% of AAC users don’t know the term	Disliked terms More than 50% of AAC users don’t like the term	Liked and used terms More than 50% of AAC users use or like the term
People who use AAC	PWUAAC PWCCN People with CCN	People with highly unintelligible speech patients consumers support recipients	AAC user People People who use AAC Part-time AAC users Full-time AAC users Individuals Users Multimodal communicators
Devices used for AAC	VOCA SGD		AAC device(s) Device Communication device Tablet / iPad / Phone /computer
Language/ speech	Residual speech	Communication deficit Speech deficit Natural language Natural speech Functionally nonverbal Functionally nonvocal Unreliably vocal Prevocal Preverbal Residual language Communication impairment Minimally vocal	Nonspeaking Spoken language
AAC service	AAC provision	AAC intervention	Communication supports

Note: This table doesn’t include every term we asked about. Instead, it shows the terms about which AAC users are most likely to have strong opinions.

The big debate: Identity-first vs. person-first language

A big debate we see again and again on our social media channels is around identity-first versus person-first language. In other words—do we say autistic person or person with autism. From our results, it is clear that identity-first language, such as disabled person, is the most common preference of neurodivergent respondents—at least half selected this option whether they used AAC, spoken language, or both.

For participants who do not identify themselves as neurodivergent, person-first language is the most common preference.

Overall, most participants support some mix of person-first and identity-first language. This includes people who say their preference depends on the diagnosis they’re talking about. For example, people could follow community preferences and use person-first language for people with Down syndrome but identity-first language for autistic people.

What words do AAC users prefer?

Looking at the results, the terms that AAC users like or report using tend to be descriptive and direct.

AAC users

No matter how people communicate, the most frequently liked or used term in the whole survey is AAC users, with more than three-quarters of respondents who use AAC, liking or using the term.

People who use AAC

People who use AAC is the second most preferred term to refer to a group of people who use AAC. This is supported by nearly two-thirds of the participants.

Multimodal Communicators

Multimodal communicators is the third preference to refer to AAC users as a group. Half the participants who use AAC like or use this term.

AAC users who don’t speak are more likely to dislike Multimodal communicators than speaking AAC users.

“
"Speaking people are also multimodal communicators because they use nonverbal body language and writing and other things too."

Part-time AAC users

Speaking AAC users tend to like and use the term part-time AAC users. Over two-thirds of participants who use both AAC and spoken words like or use this term.

Non-speaking AAC users have decidedly mixed opinions about part-time AAC users as a term. Less than one-third of participants who exclusively use AAC, like or use this term.

05 Non speaking AAC users — “Part-time AAC users”, according to AAC users who don’t speak: 33% dislike the term, 39% are neutral, and 28% like or use it.

This term is also more popular among neurodivergent respondents, regardless of how they communicate.

Full time AAC users

Full time AAC users is a slightly less popular term than part-time AAC users overall. However, people tend to have very similar opinions about these two terms.

People

When discussing a group of people, the most commonly preferred term is simply people. Over three-quarters of the survey takers who use AAC like or use this term.

Individuals

Individuals isn’t as popular as people, but AAC users still tend to like and use it. Over half of the survey takers who use AAC like or use this term.

Users

Users and individuals are very similar in overall popularity. It’s not always the same people liking each of these terms, though!

“
“Context matters so much more than the word itself! I want to be referred to how a fully speaking person would, unless there is a reason why special reference makes more sense and is not patronizing.”

AAC device

AAC users like this term. Nearly three-quarters of participants like or use this term.

Communication device

Over half of AAC users like or use this term. It’s not quite as popular as AAC device, but it’s commonly accepted. Most of the terms that include the word device are similarly acceptable.

Communication supports

Communication supports is very similar to Communication device in popularity.

“
“Output, aide and tool” seem separate from my body. Those terms are too detached from me. It’s insulting. My communication methods are voice.”

Spoken words

There is no universally accepted way to describe spoken words. About half of AAC users like or use spoken words, however.

Spoken language

The terms spoken language and spoken words are equally popular, each liked or used by about half of AAC users.

Nonspeaking*

There is no universally accepted way to describe someone who does not use spoken language. Three-quarters of neurodivergent AAC users like or use nonspeaking, whether or not they use speech along with AAC.

However, nearly half of people who use AAC but don’t identify as neurodivergent, dislike the term nonspeaking.

12 AAC users who dont identify as neurodivergent — “Nonspeaking”: Among AAC users who don’t identify as neurodivergent: 49% dislike it, 24% are neutral, and 24%% like or use it.

Nonverbal*

AAC users who don’t identify as neurodivergent chose nonverbal as their most liked or used term to describe people who don’t speak. None of the options got a majority for this group, so this is definitely a term to check with the person you’re talking about whenever possible.

Neurodivergent AAC users are even more likely to have a strong opinion about nonverbal than AAC users who don’t identify as neurodivergent. Almost half dislike the term.

14 Neurodivergent AAC users — “Nonverbal”: 47% of neurodivergent AAC users dislike it, 11% are neutral, and 39% like or use it.

“
“I know a lot of people don't like ‘nonverbal,’ but I prefer it because it's widely understood.”

“
“Nonverbal is a tricky word. We all communicate nonverbally in some ways…but verbal refers to symbolic language and words, and oral speech is not the only language modality for use of words.”

AAC-related words to avoid

There are 18 terms that over half of AAC users dislike. Broadly, they can be grouped into four groups: deficit-based language, words that put the AAC user in a passive role, judgments about speech, and terms involving vocal. Note that for respondents who use AAC exclusively, this list increases to 40 highly disliked terms.

Unsurprisingly, language that presents speech as superior to other communication is not very popular. Words that put the AAC user in a passive role, like patients and support recipients were also unpopular. Terms that require an outside judgment of an AAC user’s speech were also frequently disliked—they may also put the AAC user in a passive role.

Communication deficit

Among AAC users, communication deficit is the most disliked term in the entire survey. More than three-quarters of the survey takers who use AAC dislike this term!

Speech deficit

Speech deficit is the second-most disliked term among AAC users. More than three quarters dislike it, very similar to communication deficit.

Communication impairment

Communication impairment isn’t as unpopular as communication deficit, but it still isn’t popular among AAC users. Over half dislike it.

People with highly unintelligible speech

Like other deficit-based language, people with highly unintelligible speech is unpopular. Almost three-quarters of the survey takers who use AAC dislike this term.

17 People with unintelligible speech — “People with highly unintelligible speech”: 4% are unfamiliar with the term, 72% dislike it, 23% are neutral, and 5% like or use it.

People who rely on AAC; People who require AAC

People who use AAC tend not to like being described as people who rely on AAC or people who require AAC. A small difference in words can make a big difference in perception!

18 People who rely require on AAC — “People who rely on AAC”: 44% of AAC users dislike the term, 39% are neutral, and 17% like or use the term.

Preverbal

AAC users tend not to like the term preverbal. Over half of the survey takers who use AAC dislike this term.

19 Proverbal — “Preverbal”: 15% aren’t sure what it means, 58% dislike it, 21% are neutral, and 7% like or use it.

AAC intervention

AAC intervention is about as popular as preverbal: that is, AAC users don’t like it.

Natural language

About two-thirds of AAC users dislike the term natural language.

“
“Speech is NOT inherently more ‘natural' than sign language or other forms of communication. It does a disservice to Deaf people as well as AAC users.”

Patients

About two-thirds of AAC users didn’t like patients to refer to a group of people.

Consumers

Consumers is very similar in popularity to patients as a group term—about two-thirds of AAC users dislike it.

Support recipients

Support recipients is almost as widely disliked as patients or consumers, and slightly more AAC users don’t know what it means. Support recipients is also slightly less likely to be liked or used. Just say people; people actually like that term.

Functionally nonspeaking

Nearly half of AAC users dislike the term functionally nonspeaking. The few AAC user respondents who like or use this term are neurodivergent, but even they mostly don’t like the term.

23 Functionnally nonspeaking — “Functionally nonspeaking”: 9% of AAC users are unfamiliar with the term, 47% dislike it, 33% are neutral, and 11% like or use it.

Unreliably speaking

More than two-fifths of all AAC user respondents, including more than half of the AAC users who don’t speak, dislike the term unreliably speaking.

Functionally nonverbal; Unreliably verbal

Nearly two-thirds of AAC users dislike each of functionally nonverbal and unreliably verbal. People who use AAC exclusively are even more likely to dislike these terms—closer to three-quarters of them dislike both terms. However, a significant minority of speaking AAC users who don’t identify as neurodivergent do like or use unreliably verbal.

Vocal: Prevocal, vocal language

Interestingly, any phrase that included the word vocal shows up within the top 50 most disliked terms, all of which are disliked by at least 39% of AAC users. The most disliked of the terms containing vocal is prevocal.

Among AAC users, the least disliked of the vocal phrases is vocal language.

39 Vocal language — “Vocal language”: 1% aren’t sure what it means, and 39% dislike it. Then 47% are neutral and 13% like or use it.

“
“Vocal and speaking are different things. I could be able to laugh but not be able to speak.”

Talker

Talker is not a popular way to refer to an AAC device. More than a third of AAC users dislike the term, including more than half of non-speaking AAC users.

Acronyms

Acronyms (other than AAC itself) lead to both confusion and dislike. AAC users consistently prefer fully written out versions of phrases to their acronyms when asked about both forms.

PWUAAC

The most extreme difference in opinion between a fully written out phrase and its acronym is for PWUAAC (People who use AAC). Almost a third of AAC users don’t like PWUAAC while 50% don’t know what it means (including several who don’t like it and don’t know what it means).

In contrast, most AAC users like or use people who use AAC.

Speech generating device (SGD)

Neither Speech generating device nor its acronym, SGD, are especially popular. However, more AAC users like or use speech generating device than dislike it, and nearly half are neutral to it.

However, very few AAC users like or use the acronym SGD, and more than a fifth aren’t sure what it means.

29 Acronym SGD — “SGD”: 21% are unfamiliar with the acronym, and another 28% dislike it. 36% are neutral, and 15% like or use it.

Voice output communication aid (VOCA)

Even when fully written out, voice output communication aid is either disliked or unfamiliar for almost half of AAC users. Even those who are fine with the term aren’t particularly likely to use it.

However, VOCA is less likely to be understood than voice output communication aid: more than a quarter of AAC-using respondents aren’t sure what it means.

31 VOCA — “VOCA”: 28% don’t know what it means, 33% dislike it, 30% are neutral, and 9% like it or use it.

People with complex communication needs (People with CCN; PWCCN)

More than a quarter of AAC users dislike the term people with complex communication needs. However, similarly many like or use the term.

As people with complex communication needs is condensed into its acronym forms, more people aren’t sure what it means, more people dislike it, and more people both dislike it and don’t know what it means at the same time. More than two-thirds of AAC users don’t know what people with CCN means, don’t like it, or both.

33 CCN — “People with CCN”: 34% were unfamiliar with the term, and 38% dislike it, including several who aren’t sure what it means and don’t like it at the same time. 22% are neutral, and 9% like or use the term.

When people with CCN is compressed further to PWCCN, both dislike and unfamiliarity increase again.

34 PWCCN — 40% of AAC user respondents are unfamiliar with the term PWCCN. 44% dislike it, including 5% who both dislike PWCCN and aren’t sure what it means. 19% are neutral, and only 2% like or use PWCCN.

“
“I stick with terms that will probably be easy to understand 200 years from now … AAC, CCN, PWUAAC, PWCCN may become like hieroglyphics. People with disabilities have been marginalized and relatively invisible throughout history. Why use terms that might contribute to it now and in the future.”

It’s complicated

There are some words where preferences among AAC users vary depending on whether or not they speak in addition to using AAC. Opinions on other words depend on whether or not respondents identify as neurodivergent. Sometimes, both of these are relevant.

This includes terms like nonspeaking, nonverbal, part-time AAC user, and full time AAC user. They aren’t the only ones.

Intermittently speaking; intermittently nonspeaking

Opinions about the terms intermittently speaking and intermittently nonspeaking vary with whether or not an AAC user also speaks.

Nearly two fifths of speaking AAC users like or use the term intermittently nonspeaking, but a full fifth dislike it. Intermittently speaking is slightly less popular.

35 Intermittently speaking intermittently nonspeaking — “Intermittently nonspeaking”: About 1% of speaking AAC users aren’t sure what this term means. Then 20% dislike the term, but 40% are neutral and 39% like or use it.

However, more than half of AAC users who don’t speak dislike intermittently nonspeaking, and nearly half dislike intermittently speaking. The few who like these two terms still don’t use them.

36 dislike intermittently nonspeaking — “Intermittently nonspeaking”: 6% of respondents who use AAC exclusively are unfamiliar with the term, 53% dislike it, 30% are neutral, and 11% like or use it.

Neurodivergent AAC users are also more likely to like and use the phrases intermittently speaking and intermittently nonspeaking than AAC users who don’t identify as neurodivergent.

Mouth words*

Mouth words is a polarizing term. Much like nonverbal and nonspeaking, preferences depend on whether or not respondents identify as neurodivergent, often more so than how they communicate.

A significant minority of neurodivergent AAC users dislike mouth words—almost a third of them. However, more than half like or use it.

37 Mouth words — “Mouth words”: Among neurodivergent AAC users, 31% dislike the term “mouth words”, 16% are neutral, and 53% like or use it.

“
“Spoken can be device or mouth. So mouth words help know what talk of.”

AAC users who don’t identify as neurodivergent, on the other hand, strongly dislike the term. Over three-quarters dislike the term. The few who like or use the term mouth words use both AAC and speech.

38 Dislike mouth words — “Mouth words”: For AAC users who don’t identify as neurodivergent, 76% dislike “mouth words”, 15% are neutral, and 9% like or use it.

“
“I really don’t understand the movement to refer to spoken words as ‘mouth words.'…. It’s my motor dysfunction and myoneural disorder that making spoken words out of my functional mouth virtually impossible.”

An AAC glossary is not a discussion

AAC users can and do have opinions on how we want to be described. There are some terms we’re more likely to like and use, and others are widely disliked. We learned a lot by asking many people what they thought about different words and phrases related to AAC. We hope you learned something too. It’s important to think about how our language positions people who use AAC and the ways we communicate.

However, it’s important to know that AAC users also don’t always agree with each other on the words we like and dislike. Except for people, every term is disliked by at least one AAC user. Every term also had at least one AAC user who says they use it.

This post can help advise you on referring to larger groups of AAC users, but we can’t tell you how to describe yourself, nor your child, sibling, or colleague. Do you want to know what words a specific person in your life prefers? Ask them!

* Update (November 2022)
We've adjusted the text and visuals for "Nonverbal", "nonspeaking", and "mouth words", so they reflect the data more accurately.

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