Tag: aac

Learning to listen

Real Social Skills

One of the reasons this blog is called “Real Social Skills” is that the skills needed in order to listen to people with disabilities are not seen as “social skills”.

Disabled people who communicate in unusual ways are usually seen as having a social skills problem. People who don’t understand what disabled people are saying are *not* usually seen as having a social skills problem. The disabled person is almost always blamed. It doesn’t have to be like this; it’s a problem with our culture; this is something that we can change.

Listening to other people (disabled or not) involves a lot of skills. No one is born knowing how to understand what others are communicating — we all have to learn how to listen. And we’re never done — there is always more to learn about listening and understanding other people. We should all have an expectation that learning skills for listening to people who communicate atypically is part of that. No one is too young or too old to learn to listen.

For instance, all of these things are listening skills:

  • Understanding what someone who has a heavy CP accent is saying
  • Maintaining a conversational rhythm with someone who takes longer than most people to process or express themself
  • Having a conversation with someone who doesn’t make eye contact, and figuring out alternative ways to tell when they are and aren’t paying attention
  • Noticing when repetition is communication
  • Understanding the indirect communication of people who can only use the limited core vocabulary words available on their communication devices
  • Giving someone who has been through intense compliance training the space they need to express their own thoughts rather than yours
  • Paying attention to what someone who speaks oddly is saying rather than writing it off as rude or cute 
  • Listening to someone who has both communicative and non-communicative speech, and figuring out which words are and aren’t intended as communication
  • Listening to someone who has both voluntary and involuntary motion, and figuring out which gestures are and aren’t communication
  • And so on.

No one is born with fully-developed listening skills. Learning to listen effectively is a lifelong process. Learning to listen to people with communication disabilities needs to be part of that.

Thoughts on symbol support and picture support

Real Social Skills

People with certain kinds of disabilities often need more than words in order to be able to communicate. One thing that can be helpful is the use of symbols or pictures.

Using symbols can expand and support someone’s expressive vocabulary. (For instance, picture symbols on a communication device can enable someone to use words they couldn’t use by typing or speaking).

Symbols can also expand and support someone’s receptive vocabulary. For instance, symbols can be used to illustrate materials, or to explain something to someone. They can also be used in things like powerpoint presentations in various ways.

Symbol support can do a lot of other things that make communication more possible for people with a wide range of disabilities. It’s not just about literacy; literacy-related things are just the easiest to explain.

Something I’ve been realizing matters is that everyone who uses symbols to communicate is a symbol support user. Even people who normally communicate in words; even people who only use symbols to communicate when they are talking to people with disabilities or listening to people with disabilities.

It’s important to remember that communication in symbols is happening on both sides of the interaction.

If someone is communicating with you by showing you symbols, then you are using symbols for receptive communication.

If you are using symbols to explain something to someone, then you are using symbols for expressive communication.

It’s important to keep this in mind.

If you’re using symbols, the symbols are part of the communication. Even if every symbol is attached to one word and only one word. The symbols don’t just tell people what the words are. They also have content, and it’s important to pay attention to what you’re saying with the symbols. They might not mean the same thing to the person you’re talking to that they mean to you. Particularly if they understand picture-concepts more readily than they understand word-concepts.

For example:

Sometimes people might select symbols on communication devices based on what the symbols mean rather than what the words they’re associated with them mean:

  • If someone is putting together phrases that don’t make obvious sense to you, they might mean something by it
  • It might *not* be stimming, random exploration, or that kind of thing
  • It might be intentional communication based on what the pictures mean to them
  • I think it is important to take that possibility seriously (even for someone who also speaks, or also uses words)
  • And *especially* important to take seriously if they’re indicating with body language that they want you to look at the screen)
  • (This is also true if someone is using PECS symbols in a way that doesn’t appear to make literal sense. It might be because the pictures mean something different to them than they mean to you)

Similarly:

  • If you’re using symbols to explain something to someone who needs symbols, the symbols matter
  • It’s not always enough to just pick words, then pick symbols that go with those words one-by-one
  • The content of the symbols can matter beyond literal word-by-word meaning
  • The way the symbols combine can also matter. (ie: the fact that a sentence makes sense in words and each symbol corresponds well with a word does *not* necessarily mean that the symbol-sentance makes sense)
  • The symbols also might not mean the same thing to the person you’re communicating with that they mean to you
  • If someone finds symbols easier to understand than words, they may derive more meaning from the symbols and your tone of voice and body language than they do from the words themselves
  • It’s important to pay attention to what you’re communicating with the symbols you choose as well as the words that you choose

Some considerations for symbol use:

  • Consistency between symbols matters. Symbols combine in ways that make more sense when there’s an underlying logic to the symbol system.
  • Symbols should not be childish or cutesy, even for young children.
  • Because nobody, not even young children, wants to be forced to communicate in cute ways.
  • And some really important topics (eg: abuse, boundaries, sexuality) are decidedly un-cute. People with disabilities need and deserve respectful communication about things that aren’t cute or shiny-happy.
  • Symbols should be comprehensible at a variety of sizes. (Eg: overly complex symbols don’t work well for small buttons on a communication device).
  • Symbols should be respectful, especially when they are symbols of people doing or thinking or being things (eg: protestors should look powerful rather than cute; adults should look like adults; symbols for “choice” should either be abstract or be age-neutral)
  • Symbols should be accurate. (eg: the symbol for anger should not be a smiling person; the symbol for diabetes should not be the same as the symbol for “no sugar”; wheelchair users should have the kind of wheelchairs that individuals own than hospital wheelchairs; the symbol for intellectual disability should not be the same as the symbol for the special olympics)
  • In all of these ways and other ways I’m not sure how to explain yet, I think that SymbolStix is the best existing symbol set.

Short version: Symbols can be really helpful for supporting communication and comprehension. If you’re using symbols to help someone else communicate or understand, it’s important to keep in mind that the symbols and the words both matter. Pay attention to what you’re communicating in symbols and what they’re communicating in symbols. Sometimes there are things going on beyond the literal meanings of the words that someone decided to associate with the symbols.

AAC does not replace nonverbal communication

Real Social Skills

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

Real Social Skills

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

Real Social Skills

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.

Using the memory you have

Real Social Skills

A reader asked:

I have memory issues. Things like names, dates or times, directions, and other important details often escape me. Lately, I’ve been using “external memory” in the form of a notebook or my phone.

However, people tend to get impatient or bored at best when you’re constantly consulting a notebook in order to tell them what you need.

At worst, they talk over me, try to tell me what they think I want, or walk away.

How do I get people to understand?

Or should I just work on fixing my memory instead?

realsocialskills said:

A few things:

Don’t wait for better memory:

  • Improving memory is possible for some people; not everyone
  • Whether or not it’s possible for you, you need to communicate now
  • Communication shouldn’t wait for cognitive changes
  • It’s important to make strategies that work with the cognitive abilities you have now

Meanwhile, you might be able to make some of your external memory faster. Here are a few possible ways of doing that:

Write things on your hand or a wrist band:

  • Looking at your hand only takes a second
  • This might work well for remembering what food you want to order, or what you want to buy
  • Or in general terms what you wanted to talk about
  • There are also disposable paper wristbands you can buy to put notes on
  • That works similarly, without having to write stuff on your hand

Put some information on your phone’s lock screen, eg:

  • Write something in your notes app
  • Take a screenshot
  • Make that screenshot your lock screen wallpaper
  • This means the information is available immediately once you get out your phone

Cheat sheets:

  • If there are things you consistently need to know but can’t remember, making pages with that information and putting them in particular places might help
  • Eg, for remembering what a store has
  • Or remembering what questions you’re likely to be asked
  • Or lists of people who are likely to be in particular places

Optimizing your notebook:

  • Eg: If there is information you need frequently, it might be worth putting it on dedicated pages with color-coded tabs
  • It also might be worth using something like a three-ring binder so that you can put information you need soonest at the front
  • Or even *on* the front, if you get a three-ring binder that has a space to put in a cover sheet on the front

Communication boards or apps:

  • Using communication boards or a picture-based AAC app might help too
  • Communication aids aren’t just for generating speech, they can also be for cognitive prompting reminding you what it’s possible to say
  • Making pages for particular situations might help you to communicate faster
  • You’d still have to open the page, but it might result in less hunting around for information once you get there
  • Having a page with a few options might make it easier to remember and process things
  • Associating images with things you’re trying to remember might make them easier to remember
  • If you keep the symbols in a consistent place and touch them some while you communicate, muscle memory might also help you to remember things
  • (Even practicing with boards in private without using an app to communicate directly might make it possible to use muscle memory to prompt yourself)
  • Proloquo2Go might work well for this
  • (Or maybe even something like Custom Boards, although that uses more childish symbols and that could be a problem)

It also might help to be more open about your memory difficulties:

  • Sometimes being open about how bad your memory is can help
  • If you don’t tell people what you’re doing, they might not be able to tell the difference between using external memory and ignoring them
  • (Especially if you’re looking at a phone; they might think you are facebooking or something)
  • They also might be trying to help, and might not realize that it’s being anti-helpful
  • If you tell people what’s going on and what would help you, *some* people will do the right thing
  • (Not all. But enough that it’s often worth it)
  • That also can allow you to ask people things that you don’t remember

Eg:

  • “I’m sorry, my memory is bad — could you remind me who you are?”
  • “Give me a second — I need to check my notebook.”
  • “I don’t remember when that’s happening — I need to check my calendar on my phone.”
  • “I actually get really confused when people try to tell me what they think I want — I’ll be able to find it faster if I check my phone”.

Also, if you’re approaching people and they’re walking away, it might help to change the order in which you do things to make it go faster from their perspective, eg:

  • Get out your notebook
  • Turn it to the right page
  • Put your finger on the piece of information you need to remember
  • Then go up to them and ask for help

Short version: If you have memory issues and rely on external memory aids, there may be things you can do to use them more quickly.

Backup communication methods

Real Social Skills

A reader asked:

I find it very difficult to communicate myself verbally sometimes, to the point where I get frustrated and actually cry. It’s like, I can’t find the right words quick enough and it all comes out in jumbles. How can I improve my social skills when it comes to speaking?

realsocialskills said:

I think I’m going to write a few posts about this, because there are a lot of things that can help. But in this post, I’m going to talk about backup methods of communication:

For many people for whom speech is unreliable, having another method of communication to fall back on is gamechanging:

  • Speech isn’t the most important thing
  • Knowing that you will be able to communicate is the important thing
  • If fear and frustration is a reason that speech becomes difficult for you, knowing that you will definitely be able to communicate might in itself improve your ability to speak

Having a backup method doesn’t mean you have to use it all the time:

  • You might get stuck at one point in a conversation, type a bit, then resume speaking

Some possible backups:

Pen and paper:

  • If handwriting is reliable for you, it might help to carry around a pen and paper
  • That can allow you to write instead of speaking
  • Or to write a few words to unstick yourself
  • The advantages of this is that it’s cheap, low-tech, and readily available
  • (And most people have used paper to pass notes in a situation where they didn’t want to speak, eg: in a class, so it might not even look that odd)
  • You can also use this to draw diagrams or drawings illustrating a point. (even if it’s not a point that’s usually illustrated that way.) Having a non-words-based way of explaining things can help a lot.

An iPad (even without any special apps):

  • If you have an iPad, it might be worth making a point of carrying it with you all the time
  • You can take an iPad out relatively quickly and type on it just in the Notes app
  • (I do this)
  • You can even do text-to-speech this way. If you go to the general settings, then accessibility options, you can turn on text to speech. There are voices for a lot of languages; not just English.

You can also use iPads, paper, and computers as a stealth form of communication support:

  • If you pretend you’re taking notes, people generally won’t question it
  • You can then type out many of your responses before you say them
  • That can separate the process of figuring out what to say from the physical act of saying it
  • That can make speech far more possible for some people
  • (I do this more or less constantly in classes, seminars, discussion groups and certain kinds of meetings).

An iPad with decided communication apps:

  • There are a lot of dedicated communication apps for iPads (most of the good ones are expensive).
  • If part of your problem is that you lose words or forget the kinds of things that it’s possible to say, a communication app might help
  • Proloquo2Go has a lot of flexibility and good symbol support. If you have trouble with words and need symbols to remind you, it might be  a good option.
  • You can make dedicated pages for situation in which you tend to have trouble communicating.
  • Making the pages also might in itself help you to map out things you can say in various situations, even if you aren’t able to use them directly.
  • Speak4Yourself isn’t very flexible at all, but it has icons arranged in a way that’s well thought-out. It’s designed to work with muscle memory, having the words in the same place all the time so that your hands remember where you are. If you sometimes need help even with simple words and don’t need specialized pages, it might be a very cognitively user-friendly option.
  • Proloquo4Text is a text-based AAC app. It can store phrases in categories to access quickly, and has very high-quality word prediction. You can also make the display text very large if you’d rather show your screen than use a computer voice.

Short version: If you have trouble with speech and get overloaded, it’s a good idea to have a backup communication method. Scroll up for some concrete suggestions.

Learning to argue and stay oriented

Real Social Skills
A reader asked:
I was conditioned from a really young age to be passive and go along with whatever was happening (mostly because of my dad’s temper. He was never abusive but he was very angry and it was never worth the battle to disagree with him), so now everytime i get into a disagreement or heated discussion with someone I end up crying and choking up to the point that I can’t get a sentence out.
Do you have any advice for being able to argue inspite of this?
realsocialskills said:
A few suggestions:
It might help to communicate more slowly when things aren’t urgent. For instance:
  • Some conversations might be possible for you to have over email, but not in person
  • It’s ok to say “let’s move this conversation to email so I can figure out what I think without melting down”
  • It’s also ok to need to pause the conversation from time to time
  • Needing the conversation to be over for a while doesn’t mean you’ve conceded the point
  • Some things are urgent, but a lot of conversations can be slowed down

Learn to use the word “maybe”:

  • It’s ok not to know what you want
  • It’s ok not to know whether you’re ok with something
  • It’s ok to need time to figure it out
  • “Maybe” is an important word, you don’t always have to say yes or no immediately

It might help not to rely so much on your voice:

  • A lot of people who can’t get words out for various reasons can still type
  • You might find that typing is more reliable than speech for you when a conversation gets emotionally intense
  • An iPad can be really useful for this since it is very portable
  • You can use a text-to-speech app (Verbally is a free one, Proloquo4Text is a dramatically better but also more expensive one),
  • Or you can even type in Notes and show the screen to the person you’re talking to
  • Or sometimes typing the thing first can make it possible to say the thing with your voice.

It might help to make less eye contact:

  • If you’re intimidated, looking at someone’s face can make matters worse
  • If you aren’t looking at their face, it might be easier to think and speak

Example of assuming we’re not listening: TalkingTiles

Real Social Skills

There is an AAC app called TalkingTiles, that uses an interesting approach to managing communication pages. It offers cloud-based subscriptions and a library of available tiles, and can sync across multiple devices. It’s also possible to edit communication pages on a computer rather than on the iPad or whatever other mobile device it’s running on.

That’s good. What’s bad, is that they think of the users of this app as parents and therapists working with people who need communication software. They don’t seem to consider the people who actually use the app for expressive communication to be users; the app is something that is used on them rather than by them.

They describe it thusly:

TalkingTILES has helped those inflicted with a communication disability brought on by a neurological disorder (such as Autism, Cerebral Palsey, ALS or Parkinson’s) as with those who have suffered a trauma (such stroke or brain injury). We’ve taken a collaborative approach to AAC bringing together professionals (therapists, educators and support workers) and their clients,caregivers and families, enabling remote programming and remote content sharing across each other’s devices making AAC therapy more productive and efficient for both client and professional. 

Do you see what’s missing here? The end user, the person who will actually be using the device to communicate, is not addressed directly.
And it’s much more explicit in the user accounts. You have to have a cloud-based subscription to make the software do much, and there are two kinds of accounts:
TalkingTILES for Professionals & Caregivers :

• Professional AAC Support Teams – therapists, educators & support workers- your Mozzaz Cloud Subscription is FREE. We want you to learn, try and trust TalkingTILES as an effective AAC solution for your clients.
 
• Caregivers & Families – we understand the challenges and commitments that come with supporting and helping your loved one with a communication disorder. TalkingTILES offers the most flexible and adaptable AAC app that can be tailored to your personal needs at a very affordable price. We make AAC therapy productive and efficient through our collaborative model with professionals on your team. A Mozzaz Cloud Subscription plan will save you time, money and be more efficient with your AAC goals and programming.
There isn’t an option to register an account for yourself, as the person who will actually be using the app to communicate. There should be. People who use software to communicate have agency, and sometimes look for software options for themselves. Product descriptions, marketing, and design ought to take this into account.
When you’re designing adaptive equipment or software for people with disabilities, please remember that people with disabilities use it, and address them when you describe your product.