nonverbal

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.

tl;dr 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.

tl;dr 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.

tl;dr 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.

Thoughts on doing right by nonspeaking people

Anonymous said to :

I thought your post about kids with autism was great… but tbh I feel like a lot of autism resources ignore autistic people who are less self aware? For example, my sister, who has autism and is unaware of it + cannot speak… where are the resources that apply to her?

How can I help and support her? I feel like people with autism like her are frequently ignored in these kinds of posts.

realsocialskills said:

Several things:

Remember how much you don’t know:

  • You can’t really say definitively that your sister isn’t aware of autism
  • There is no reliable way to assess receptive language in someone without reliable expressive communication
  • Ie: You know that your sister can’t talk; you don’t know what she understands
  • Some tests can show that someone *does* understand language, but they can never show definitively that they *don’t*
  • Your sister may understand language; she may not. There’s no reliable way to be sure
  • It’s important to keep both possibilities in mind
  • Dave Hingsburger wrote a couple of good posts about interacting with nonspeaking people who may or may not understand language here and here

Keeping in mind the possibility that she understands language (or that she might be able to learn how to use language):

  • Talk to her like she understands
  • Tell her about things you think she might want to know (including autism)
  • Tell her that you can what she thinks, and that you know she might understand you
  • When you make choices related to her, explain them to her
  • Tell her what’s going on and what’s going to happen, whether or not she demonstrates understanding
  • Have books around about things she might want to know about
  • Turn the TV or radio to things you think she might be interested in
  • If she’s a child, put her in educational settings in which she’s hearing lessons on grade-level material, whether or not she’s able to demonstrate comprehension
  • Keep trying for communication support

Regarding communication support:

  • There are a *lot* of different things to try
  • A month-long trial is not long enough to determine whether a communication strategy will work for someone
  • Some people can use a system right away; some people need months of being shown how it works and experimentation before they can use it
  • You don’t have to use simpler systems before you can do more complex things
  • One of the things you should try is a high-tech AAC system based on core vocabulary.
  • Speak For Yourself has some advantages over most other systems (including that they have good resources for people supporting family members without much professional support)
  • This is a good post on the importance of trying things, with some suggestions of things to try. (It’s written by a parent of a young child, but it’s also relevant for people supporting older children or adults).
  • Human-supported systems like a PODD book work better for some people
  • Signed languages like ASL work well for some people
  • The Rapid Prompting Method works for some people nothing else works for. (It’s particularly effective for people with severe apraxia or severe attention problems.)
  • Multi-sensory systems like Makaton also work for some people (but systems that allow for more open forms of communication are better)
  • tl;dr There are a *lot* of approaches to supporting communication, and it’s important to keep trying to find one that will work for her

Keep in mind the possibility that she does not understand language, or that she needs help understanding it:

  • She might not understand words
  • She might need pictures or symbols to help her understand words
  • She might need simplified language (but don’t make *everything* simplified, because that might not be what she needs. It’s a guess)
  • Whether or not she understands language, she does think, and her thoughts matter
  • She likes and dislikes things, and that matters too
  • (Self-awareness and language aren’t the same thing)

Make room for stuff she cares about:

  • If you think she likes, cares about, or is interested in something, find ways of making that thing available to her
  • Even if it’s things like watching the same clips on YouTube over and over, or spinning things.
  • If those things are important to her, then they’re important
  • Create opportunities for her to try new things. (Not forced. But like, offer her different kinds of food and books and stuff to watch on TV and places to go.)
  • Let it be an end in itself
  • Don’t make everything she likes into therapy
  • And *especially* don’t make everything she likes into a reinforcer to get her to do what you want
  • She has the right to like things, be interested in things, and have time that is her own

Help her to find a peer group:

  • If she doesn’t know any other autistic people, that’s a problem
  • If she doesn’t know any other nonspeaking people, that’s a problem
  • If the only time she spends with other disabled people is in tightly regimented special education or therapeutic settings, that’s also a problem
  • It’s important for disabled people to have the opportunity to meet and interact with other disabled people
  • This is particularly important for disabled people whose communication is thoroughly atypical.
  • Eg: there may be other autistic people who readily understand her body language
  • Not all disabled people will be friends, and it’s important not to force it
  • It’s also important to create opportunities
  • (And to make sure she’s seen pictures and videos of other people who look like her.)

Find ways of listening to her:

  • Whether or not she uses language, she’s communicating some things in some ways
  • Find ways of listening to her
  • Pay attention to what she does, and how she’s reacting to things, and what you think she might mean
  • (Do keep in mind that you’re guessing — it’s easy to misunderstand nonverbal communication when someone has no words or unambiguous symbolic gestures to correct you with).
  • Tell her, through words and actions, that you care about understanding what she’s telling you
  • Eg: Say explicitly things like “I think you are trying to tell me something. I’m not sure what you mean, but I’m trying to understand.”
  • Then when you think you know what she means, don’t ignore it; act on it
  • Whether or not she understands your words, it’s likely that saying them will help her to understand that you care. (It will also remind you to care).
  • The more you work on listening to her, the more often you will understand her communication

Creative arts therapists might be helpful:

  • Some creative arts therapists (particularly music therapists) do good work with nonspeaking people
  • They can often find expressive and receptive communication that others don’t find
  • They can also help to figure out what someone likes
  • (Make sure the person you go to isn’t also a behaviorist. Behavior therapists are not good at this and they tend to cause other problems).

Share what you know about her communication:

  • If others think she doesn’t communicate, tell them what you know or suspect about her communication
  • Sometimes they will use what you tell them to communicate with her
  • Even if they don’t believe you, the fact that you think she communicates will often make them treat her better

Don’t make decisions for her that she can make for herself:

  • eg: If she understands what clothing is and can pick a shirt, don’t decide for her which shirt to wear
  • If there are different kinds of food, don’t pick for her; ask her what she wants
  • If she’s in a social setting with other people; don’t prompt her into interacting with particular people. Being nonspeaking doesn’t make you the boss of her social life.
  • Just generally, don’t script everything. Respect her space and see what she initiates and chooses.
  • And if she needs help choosing, don’t take over; offer support
  • Eg: If she’s overwhelmed by the number of shirts she has, try picking up two and asking which one.

tl;dr If someone doesn’t speak, it’s important not to assume they’re unable to understand language — and also important not to assume that they do. In either case, it’s important to listen to them, speak to them respectfully, work on finding ways to support their communication, make room for their interests, and respect their decisions.

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.

The problem with errorless learning

Content warning: This is a somewhat graphic post about ABA that links an even more graphic post.

There’s a particular variant on ABA called “errorless learning”, which works like this:

  • You break a task down into small steps
  • Then do discrete trials of the steps, over and over (If you want to know more about what discrete trials are, this post by a former ABA therapist explains it).
  • When someone does it right, you reinforce in some way (either by praise or something concrete)
  • When they do it wrong, you either ignore it, or prompt and reinforce a correct response

This is considered by many to be a kinder, gentler form of ABA than punishing incorrect responses. (And maybe in some sense it isn’t as bad as hitting someone, taking their food away, or shocking them. But that’s not the same as actually being respectful. Respecting someone takes much more than refraining from hitting them.)

Errorless learning is not actually a good or kind way to teach someone. It is profoundly disrespectful.

When you ignore responses that deviate from prompts, that means that you’re ignoring a human being whenever they did something unexpected or different from what you wanted them to do. It means you’re treating their unscripted responses as meaningless, and unworthy of any acknowledgment.

That’s not a good thing to do, even with actual errors. When people make mistakes, they’re still people, and they still need to be acknowledged as thinking people who are making choices and doing things.

Further - not every response that deviates from the response you’re trying to prompt is actually an incorrect response. There are a lot of reasons that someone might choose to do something else. Not all of them are a failure to understand; not all of them are incorrect in any meaningful sense.

For instance: they might be trying to communicate something meaningful:

  • They might be putting the story pictures in a different order than you’re prompting, because they have made up a different story than the one you’re thinking of
  • They might be giving you the boat instead of the apple when you say “give apple” because they are making a joke about the boat’s name being Apple

They might be intentionally defying you in a way that deserves respect:

  • They may be of the opinion that they have better things to do than put the blue block in the blue box for the zillionth time
  • They might know perfectly well what you mean by “give apple”, but think that eating it is a better idea
  • They might be refusing to make eye contact because it hurts

They might be thinking of the task in a different way than you are:

  • They might choosing to use a different hand position than the one you’re prompting, even if they understand what you want them to do
  • For instance, they might have discovered that something else works better for them as a way of tying their shoes
  • Or they might want to try different things
  • Or the position you’re using might hurt

People do things for reasons, and those reasons aren’t reducible to antecedents and consequences. People have an inner life, and their thoughts matter. Even children. Even nonverbal children who need a lot of help doing things. Even adults with severe cognitive impairments. Even people who have no apparent language. All people think about things and make decisions, and those decisions are meaningful. All people deserve to have their thoughts and decisions acknowledged - including their mistakes.

When you teach someone something, acknowledge all their responses as meaningful, whether or not they are what you expected. 

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.