AAC does not replace nonverbal communication

This is a continuation of a series on why I think it’s a mistake to ignore nonverbal communication in an attempt to force someone to use AAC. (The short version: it’s disrespectful, it undermines someone’s ability to communicate, and it prevents people from developing a valuable skill.)

One reason nonverbal communication is important for AAC users is that you always have your body with you. That is not necessarily the case for AAC devices.

AAC best practices say that someone should have them available constantly. In practice, people don’t. This is for several reasons. One is that it’s not practical to take a device to some places (for instance, most people are not willing to take a high tech device to the beach, and low tech devices are a lot more limiting.) Another reason is that sometimes people forget, or vastly underestimate how close a device needs to be in order to be immediately available. Or any number of reasons, some innocent and some horrifying, and many a mixture of both.

Also, people take devices away from AAC users. They shouldn’t, but they do. Sometimes it’s accidental; sometimes it’s on purpose. It’s never ok, but people do it a lot. If you’re teaching a nonverbal child to communicate, you need to keep this in mind when you’re considering what to teach them. You can’t assume that people will always treat them appropriately, and you can’t assume that they will always have their device. If they are capable of communicating with their body, it is an important skill for them.

Whatever else happens, someone always has their body with them. People can do a lot more if they can use their body to communicate. Communicating in body language can make it possible to communicate in a swimming pool. It can make it possible to communicate with dirty hands. It can make it possible for someone to indicate that their device isn’t within reach and that they need it. It can make it possible to communicate about pain in medical situations. It can make it possible to communicate when someone else doesn’t want you to, and has taken your device away. It can make friendship possible that otherwise wouldn’t be. And any number of other things, all of which are important.

And in order to be able to communicate with body language, people need opportunities to practice and develop this skill. If you ignore someone’s nonverbal communication to encourage AAC use, you’re making it harder for them to develop comprehensible body language. That’s not a good idea, because comprehensible body language is important. People won’t always have access to their device. They will always have their body.

Short version: Nonverbal communication is important for nonverbal people, but parents are often encouraged to pretend not to understand it in order to encourage AAC use. This makes it harder for people to develop body language that others can understand. One reason this is a problem is that people don’t always have access to their devices, but people *do* always have access to their bodies. Nonverbal people should have support in developing nonverbal communication, because it is an important skill.

AAC is not a cure

This is a continuation of a series on why I think it’s important to listen to the nonverbal communication of nonverbal people. Often, parents are encouraged to not listen or to pretend not to understand, so that kids will be forced to learn AAC and use words. I think this is a mistake, for any number of reasons. The first post focused on the general importance of listening.

Another problem with this advice is that ignoring nonverbal communication discourages people from developing their nonverbal communication skills. That’s a bad idea, because nonverbal communication is a very useful skill for nonverbal people. It should be encouraged, not discouraged.

It’s valuable for several different reasons (and I assume, for many reasons I don’t know about.)

One is that AAC is not a cure, and it doesn’t make nonspeaking people just like people who can talk. Nonverbal people who have communication devices are still nonverbal. Currently existing AAC devices can’t do everything that speech can do. For instance:

  • AAC devices mostly can’t do tone. Voices usually can.
  • AAC devices can’t go everywhere. Voices usually can.
  • AAC devices can be taken away much, much more easily than voices can.
  • AAC is usually slow. That makes interrupting hard-to-impossible. Voices can usually be used to interrupt.
  • AAC is usually fairly quiet. Voices can usually yell.
  • Symbol-based devices generally don’t have anywhere close to sufficient vocabulary for emotional or physical intimacy. Voices do.
  • Many AAC devices give others a lot of control over what someone can say. Voices are usually more flexible.

For a lot of these things, body language and movement can be a more effective way of communicating than using a speech device. For instance, putting up a hand to say “stop!” is a lot more likely to be understood quickly than using an AAC device to say the same thing.

Similarly, most symbol sets developed that touch on sexuality at all assume the main reason people need sexual vocabulary is to be able to report abuse. Most of them don’t have robust symbols for discussing sexuality and sexual desire — and most of them don’t have any symbols for emotional intimacy at all. Body language can communicate things that a system designed this way can’t.

Another reason AAC is not like speech is that people who are nonspeaking, are nonspeaking for reasons. And AAC does not make those reasons go away.

Some people are nonspeaking because words are unnatural, painful, and cognitively draining. People like that deserve to be able to communicate in ways that are natural and comfortable. And it’s important for people close to them to listen to their natural communication. Ignoring someone’s most natural communication it is a rejection of their personhood. It’s important not to do that to people.

It’s also dangerous, because someone who finds AAC cognitively difficult and draining is likely not going to be able to use it all the time. For some people, this can be especially true when it’s particularly important to communicate, or when they’re sick. If you’re responsible for someone and you only know how to listen when they use AAC, that’s dangerous. If there’s another way they communicate, it’s important to develop your ability to understand it. (Or, if you can’t, to find someone who can.)

Similarly, if someone has apraxia or other difficulties controlling their body well enough to point, their physical ability to use AAC is likely to vary. And it’s still important to listen to them when they aren’t able to use it in the ways they sometimes can.

Short version: Access to AAC is important. It’s not the only thing that’s important, and it’s not a cure. Nonverbal people who use AAC are still nonverbal. Body language and using one’s body to communicate are also important skills. (Not everyone can learn to do this. For people who can, it’s valuable.) It is not a good idea to discourage AAC users from using body language to communicate.

In defense of nonverbal communication

Lately, I’ve been seeing a lot of posts giving parents of nonverbal kids the advice “pretend not to understand your child so that they will be forced to use AAC and communicate in words”.

I think this is a mistake.

I think that if you want to teach someone to communicate, it has to be built on a foundation of listening to them. And that means listening to all of their communication, not just communication that happens in words.

I also think that all of someone’s communication methods are important, and that they all need to be respected. There isn’t one true method of communication. They all matter.

Communicating through body language is useful for all people. People who can talk are allowed to communicate through body language, and actively encouraged to develop the skill of doing so. It’s expected that, when I smile, point to things, frown, or whatever, that people will listen to what I’m communicating. Nonspeaking people deserve the same respect.

People say “communication shouldn’t wait for speech”. I agree with that. And I think it shouldn’t wait for words either. Because words may never come. If you wait for someone to reliably use words to listen to them, you may end up never listening to them. And everyone deserves to be heard.

And even if they will eventually use words and sentences, the things they’re saying *now* still matter. And listening to them is still important.

Presuming competence shouldn’t mean assuming that with the right support, people will eventually base most of their communication on words. Presuming competence should mean assuming that, with the right support, people will choose the means of communication that work best for them. Which may be speech. Or a voice output communication device. Or sign. Or body language. Or pointing to a letter board. Or speech. Or any number of other things. Or any number of combinations of things.

Short version: Everyone deserves to be listened to. If you want to support someone in learning to communicate, it has to be built on a foundation of listening to them — in whatever form their communication takes. Ignoring one form of communication to force them to learn a different form is not respectful, and probably won’t help.

Document communication

This post may not apply to all of you, but I know a lot of you work with people whose communication is impaired, so:

I’ve come to believe that if others are reporting that someone has no communication, it is important for others responsible for their care to do everything in their power to counteract this.

Being perceived as noncommunicating is dangerous. It can prevent someone from ever being listened to. It can also lead ableists to withhold medically necessary care because they believe that person’s life is not worth living. 

You can’t reliably assess someone’s receptive communication unless they have expressive communication that you can understand (and even then, it’s difficult). Being unable to respond is not the same as having no understanding, and it’s wrong to assume that people don’t understand. So, really, no living person should ever be described as having no communication. That may not be in your power to fix, but keeping it in mind will help you to treat people better.

Beyond that, most people who are described as having no expressive communication actually do. Don’t be led astray by someone else saying that someone is “noncommunicative” or “nonverbal”. Unless the person they’re talking about is in a coma, they’re probably wrong. If you look for communication, you will be able to listen to them better, and also better able to protect them by documenting their communication. So look for it, and document it, and tell other people who care for them. Their life may depend on it, and the way they’re treated almost certainly does.

Some specific things you can look for:

  • Do they turn their head when you come in?
  • Flap their hands when they’re angry or happy?
  • Vocalize?
  • Say words that may or may not be communicative? 
  • Try to get out of their chair?
  • Sing?
  • Become more calm or agitated when you speak to them?
  • Make eye contact?
  • Say numbers?
  • (There are any number of other things)

Everyone with voluntary control over any part of their body communicates. If you’re working with someone, learn their communication and do what you can to make it known that their communication exists and matters.

Thoughts on aging, assisted living, and death

When people age, they often move to assisted living facilities, either by their own choice or in response to outside pressure. Often, these facilities present themselves as being basically just like living in your own apartment, except that they clean for you, provide meals, and offer enjoyable activities.

And, when people first move in, this is generally true. People who can do the activities of daily living without help retain control over their lives, can come and go as they please, and live very similarly to people who live in their own places. But as residents age, they loose physical and cognitive abilities, and often lose control over their lives. What once looked like an apartment can look like an institution really quickly when you start to need more help.

On TV, we never see aging or death depicted very accurately. People who die on TV don’t decline over time, they’re just there until they’re not, and sometimes they look perfectly healthy in a hospital bed before they aren’t there. And sometimes, not being there isn’t dying, sometimes it’s being put into a home.
Real death is not like that. Real death is not usually sudden. People who die of old age normally become disabled first. On TV, when you become disabled enough for it to matter, you disappear. In real life, you are still there, you are still a person, and you still care about your life.
So, if you’re old enough to be considering moving into an assisted living facility, you’re old enough that you need to plan for what will happen as you become more disabled. Don’t assume that the people who run your residence will know what to do; you will be better off if you make the decisions rather than outsourcing them to other people.
On valuing your life:
If you are old, people might pressure you to refuse treatment for medical conditions you have so that you will die sooner. They might euphemistically call this dying naturally or not prolonging the dying process. But there’s nothing unnatural about using a feeding tube, treating an infection, or any number of other things people might try to talk you out of. Do not get all of your medical information from people who see the world this way. Medical decisions are yours to make, and make sure that the people advising you on your care believe that your life is worth living.
Pay attention to the disability community as well as the aging community. Some people feel like they would rather die than come to be impaired in a way they’re dreading. Hearing the voices of people who live with those impairments and value their lives will make it much, much easier for you to get past that fear.  Everything you face physically as you age is something that some disabled folks live with long-term. They know a lot about how to be disabled and still be free, self-respecting, and live. Disabled adults who live free lives and avoid nursing homes have had to gain a lot of skills that you are going to need. Not all of what they know has reached the aging community. Learn from both.
In particular: There’s a lot of fear and misinformation about feeding tubes. When people ask you to fill out a form indicating which treatment you do and don’t want, feeding tubes are one of the first things they ask about. People often see eating with a feeding tube as something like being a zombie, being undead, and living an unacceptable life. But feeding tubes are really just a way to eat and stay alive if you can’t use your mouth to eat. Similarly, breathing support is just a way to breathe. It doesn’t make you a zombie. It lets you stay alive and gives you more time to live and love and care about things.
Questions to consider:
  • When I am no longer able to walk as far as I want to go, how will I get a good wheelchair and learn how to use it?
  • If I lose the ability to speak, how will I communicate?
  • If I develop dementia, how will I communicate as I decline cognitively? What do I need to do now to make sure that if I develop dementia, I will still be treated like a person?
  • If I need assistance in the activities of daily living, will I still be able to decide how and when to do them, or will those decisions be governed by staff convenience?
  • If others decide that I am a fall risk, will I still be able to make my own decisions about when and how to get out of bed, and whether to use a bed alarm?
Just, generally speaking – your life does not end when you become disabled. It just changes. When you become disabled, your life will still be worth living, and you will still care what happens to you. Don’t let anyone talk you into devaluing it, and plan to keep your freedom.