communication disability

Babysitting a nonspeaking four year old

Question from an anonymous reader:

I regularly babysit a 3 (almost 4) year old who has Autism. He does not speak, and he doesn't yet have a reliable alternative form of communication like signing or AAC, though he probably will soon.

 I have a lot of friends and two cousins who have Autism, but they all speak or sign. I find it difficult sometimes to understand what the kiddo in question is thinking, or wants, and I wondered if you or any of your followers have any first hand tips or advice on how I could better understand him? 

I know everyone is different, and I'm learning to read things like his body language, but I wondered if you/any of your followers who don't speak or spoke later than most remember anything that helped them get across what they meant when they were younger, or things adults did that were especially helpful. He doesn't have the coordination to sign or draw what he wants yet, being so little. I want to help him feel less frustrated and to be as good a babysitter as I can be.

Realsocialskills answered:

For the sake of readability, I’m going to call your cousin Anthony in this post. 

The first thing I’d say is: Listening to Anthony matters whether or not you succeed in understanding him. You may not be able to figure out what he is thinking, he may not yet be able to tell you — but you *can* treat him as a person who has thoughts and feelings worth listening to. That matters in and of itself, and it also makes successful communication much more likely.

Learning to communicate is really hard, even for typically developing kids. (Which is a reason why two year olds have so many tantrums, and why older kids usually grow out of that.) In early childhood education, a lot of what kids learn is that it’s possible to communicate in ways that others can understand — and that words are usually a better option than freaking out. One of the main ways early childhood educators teach kids these skills is by listening to them, and by supporting them in understanding the feelings they’re having. 

Kids with communication disabilities have more trouble learning to communicate in ways that others can understand — and they also often have more trouble learning that communication is even possible. Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings — but they often get less of both. Their feelings are often ignored, and their communication is often treated as nonexistent. 

All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior. When nobody listens, it becomes really hard to keep trying. One of the best things you can do for Anthony right now is help him not to give up.

It’s important to keep in mind that Anthony is a person with a perspective of his own. Our culture socializes us to see people with disabilities as having needs, but not thoughts or feelings. That implicit bias goes really deep for almost everyone, including AAC experts and long-time disability rights activists. Be careful to treat Anthony as a person with thoughts, feelings, and questions. This is a profoundly countercultural attitude. You can’t assume that it will happen by itself; you have to do it on purpose. (I did a presentation on this for medical providers a while ago which may be of interest.  )

Some specific things you can try:

Say explicitly that you’re trying to understand, eg:

  • “I don’t understand you yet, but I’m listening”.
  • “I’m not sure what you mean, but I do care”.
  • It doesn’t go without saying — and sometimes saying it makes a big difference!
  • Look for actions that might be intended as communication:
  • Does he point at things? Lead you to things? Flap differently under some circumstances?

Make a guess about what you think he might mean, and act on it.

  • It can be worth using words to describe what you’re doing, eg:
  • “I think you want the book because you’re looking at the book. I am getting the book”.
  • “I think the light is bothering you because you’re covering your eyes. I am turning off the light.”
  • He can’t read your mind, so it might not be obvious to him that you’re acting on what you think he’s doing — so tell him!

Name feelings you think he might be having, eg: 

  • “Susan took your truck. You are mad.”
  • “You like the marbles. You are happy.”
  • “Jumping is so fun!”
  • “You don’t like that texture.”
  • (Nb: Telling *adults* what they are feeling in these terms is usually *not* a good idea, but it’s a pretty common method used to help little kids learn about feelings — *if* you know with reasonable certainty what their feelings are.)

Ask questions, and offer choices, eg:

  • “Do you want the red shirt or the blue shirt?”
  • “Should we read the princess book or the truck book?”
  • “Should we go to the swings or the sandbox?”
  • Even if he can’t respond, being asked matters — it shows him that you care what he thinks, and that there’s a reason to try to communicate.

It can help to make the options more concrete, eg:

  • He might be more able to tell you which shirt he wants if you’re holding both of them. 
  • Or if you’re holding one in one hand and one in the other.
  • Or if you put them down in front of him.

If he responds to your question in a way that you think might be communication, respond to it as communication: 

  • Eg:  “You pointed to the dragon book, so we’ll read the dragon book”.
  • Or it may make more sense to just start reading it. Sometimes that works better than inserting too many words. 
  • Eg: “Ok, we’ll go to the park”.

You can also try yes-or-no questions:

  • “Do you want to go to the park? Yes or no?”
  • “Do you want to read the dragon book? Yes or no?”
  • “Is the dragon scary? Yes or no?”
  • “Is the king silly? Yes or no?”
  • Again, even if he can’t respond in a way you understand, trying matters.

You also might be able to teach him to point to things:

  • Pointing doesn’t require motor skills on the same level that writing and drawing do.
  • Again, in the two book example, you can ask him to point to the one he wants.
  • You can also show him pointing by doing it yourself, eg:
  • Take two books, and say “I choose the dragon book”, point to it, then read it.
  • Take two books and ask him “Which book do you choose?”
  • (Etc: It can take some time and trial and error to figure out how to teach this in a way that sticks, but it’s often worth trying.)

If he has a way to communicate “yes”, and “no” or choose between options, you can also check your guesses more directly:

  • “I think you said park. Am I right?”
  • “Did you say park, or something else?”
  • “Are you trying to tell me something, or are you playing?”

Remember that words can be communication even when they’re unusual: A lot of autistic people use idiosyncratic language to refer to things, or repeat phrases they heard somewhere else – in a way that they may or may not mean literally. Here’s a method for noticing when repetition is communication , and some thoughts on listening to folks whose speech is unusual.

Give him time to process and respond:

  • The standard teaching advice is: When you ask a question, wait at least seven seconds before you say anything else.
  • This feels a little unnatural — it can feel like a *very* awkward pause, and it can be tempting to jump in and say more stuff to clarify.
  • But if you say more stuff to someone who is thinking and formulating their answer, it tends to just give them *more* stuff to process. 
  • So give him time to respond — and be aware that autistic people often need longer to process and respond.

If you have an iPad you’re willing to let him play with, iPad use can really help some kids with motor skills and learning communicative cause-and-effect.

  • Most kids learn pretty quickly how to scroll through select the app they want, and that skill often transfers.
  • Most kids that age like Endless ABC, a really fun pre-literacy words-and-spelling app. https://www.originatorkids.com/?p=564
  • (That app also builds an association between interacting with a touch screen and making meaningful sounds)
  • You can also try the Toca Boca apps — a lot of kids like those, and some, like Toca Hair Salon, don’t require particularly strong motor skills.
  • Often, the best way is to play with the app together — eg, you show them how to drag the letters around, then offer them a turn.
  • Or help them out when they get stuck, without taking over.
  • Or say things like “which color should we pick? How about purple?” and see how they react.

Don’t expect AAC to fix everything:

  • Everything in this post still applies once he gets a device or a system.
  • An AAC device is just a tool. It’s one mode of communication, which might be useful for him under some circumstances.
  • Having an AAC device will not make him instantaneously able to communicate using words in the way that typically-developing kids his age do.
  • While some people learn to use an AAC device fluently very quickly, that is rare. 
  • Most people who use AAC because of a childhood speech delay take a long time to learn it.
  • And in any case, giving someone a tool doesn’t cure their disability. 
  • An AAC user with a communication disability still has a communication disability, and disabilities that interfere with speech sometimes also interfere with language. 
  • Even people *without* language disabilities tend to take a while to learn, for all the same reasons that typically-developing kids take a while to learn how to use words to express themselves. Communication takes practice.
  • (And also, all existing AAC technology has significant limitations and difficulties. It’s easier for typically developing kids to learn to speak than it would be to learn to use AAC, and having a speech disability doesn’t magically make AAC use easy.)
  • AAC implementations can also end up treating AAC use as an end in itself and forget that the point is to support communication. 
  • For most AAC users, AAC is one communication mode among many they use, and it’s not always the best one in every situation — eg: pointing to a banana can be a *much* more efficient way to communicate than scrolling through a device and finding the “I” “want” and “banana” buttons.
  • If Anthony gets an AAC system, he will still need you to put effort into listening to him, and he will still need you to take all of his communication seriously.

Remember that disability isn’t bad behavior, and don’t be mean:

  • Don’t ignore his communication in order to force him to talk or use a system.
  • The best way to encourage communication is to listen!
  • He’s not struggling to communicate because he’s lazy; he’s struggling to communicate because he has a disability.
  • He’s doing something really hard, and he’s in a hard situation, and that needs to be respected and supported.
  • You don’t need to introduce artificial difficulty; he is already experiencing more than his share of the real kind.

Anyone else want to weigh in? What is helpful for effective communication with a nonspeaking four year old? You can answer using my contact form.

 Tl;dr If you’re babysitting a kid who has trouble with communication, the most important thing you can do is listen to them. Scroll up for some specific options. 

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

Meaningful echolalia

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

  • Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
  • Sarah watches SpongeBob a lot
  • She wants you and other people in her life to watch it with her
  • She says a lot of phrases from SpongeBob
  • (Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
  • Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
  • Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
  • Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
  • When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
  • If so, she should probably watch more TV, not less
  • And it’s really important for people in her life to listen to her
  • And understand the references she’s making and what they mean to her
  • (Watching the shows with her is probably an important part of that; showing her other shows might be too)
  • If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

tl;dr Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

An anti-skill that interferes with friendship

This post is a further response to an ask by someone who identifies as aspie and is struggling to making friends.

Yesterday, I addressed the burden of stigma we face, and how it can make it hard to find people who will treat us well enough to be good friends. Today, I want to start talking about other problems autistic people often have making friends. (Usual standard caveat - if you relate to any of this, it’s fine to use these concepts whether or not you are autistic. Don’t worry about appropriation.)

There are a lot of social problems that autistic people often have beyond other people’s anti-autistic hate. Some of these things are inherently difficult for some of us, and some of them have to do with how we are often taught counterproductive coping strategies.

For instance, a lot of autistic people find it difficult to judge other people’s boundaries and level of interest in interacting (and that’s partly because, as kids, we’re taught that we have to interact with other kids and see them as friends regardless of what we or they want).

Here’s an example of how an autistic impairment and stigma combine to create a relationship problem for some people:

  • One thing that often gets autistic people classified as aspie is having more receptive language problems than expressive language problems
  • People with really good, or good-seeming, expressive language can often cover for the fact that they don’t understand much of what’s going on
  • This allows them, especially as kids, to pass as just socially awkward, or to pass as being too gifted to get along with other kids, or any number of variants on that theme
  • There is often very, very intense pressure on autistic people classified as aspie to cover impairment at all costs and to appear as normal as possible
  • This makes receptive language problems even worse, because it prevents them from getting good feedback on whether they’re understanding anything
  • And sometimes, aspie spaces can make this even worse. Sometimes aspie-oriented communities are centered around helping people to deny that they have language problems, and to say that the rest of the world just communicates wrong
  • (It’s true that the rest of the world needs to work on accommodating people with communication disabilities more - but autistic folks need to acknowledge that they *have* communication disabilities, and a lot of aspie-identified folks like to deny this)
  • Covering up receptive language problems can make friendship really difficult. Friends need to be able to understand each other
  • Which means friends need to be able to admit it and fix it when they *don’t* understand each other

If this sounds like you, it’s likely that getting better at friendship will involve looking more autistic.

More on social problems autistic people often struggle with tomorrow.

Getting questions heard

anonymous asked:
People tend not to answer me when I ask a question, even if it’s something I need to know. It’s particularly bad with regards to planning or getting background information on what is happening at a given time. What might I be doing that tells people answering me is optional? How can I emphasize that getting an answer is important? (I’m pretty sure I’m the problem, since no one else has trouble finding things out from the same people I am talking to.)
 

realsocialskills answered:

I actually have this problem too. To the extent that sometimes I get confused about whether I actually even *asked* the question, because people seem to have completely ignored it.

I think it might be that they don’t realize that you’re asking a question because they rely on certain cues to know that they’re being asked stuff. There are a few things I’ve figured out in this regard. For instance:

Eye contact:

  • Most sighted neurotypical people use eye contact as part of the way they initiate a question.
  • They look at the person they want to ask, that person looks back, then they ask
  • People who rely on eye contact to tell when someone is asking a question might have trouble understanding that you want to ask something if you’re not looking at them
  • It might help to look in their direction when you ask them something, even if you’re not actually doing the eye contact thing

Tone:

  • I don’t know how to describe this, but there’s an inflection most people use when asking questions
  • If you’re not inflecting questions that way, it might be hard for some people to detect the question
  • I don’t know how to describe this, but it might help to listen to how people who are successfully getting their questions better are inflecting them

Volume:

  • It might be that you’re speaking too quietly and people aren’t noticing that you’re talking
  • This can particularly happen if you’ve been socialized not to take up space
  • It might be worth trying intentionally talking louder

You might want or need to provide cues in a different ways:

  • Not everyone can provide the inflection/volume/eye contact cues.
  • They can be useful strategies if you can do them, but they’re not the only ways
  • If you can’t do it that way, there are other ways, for instance:
  • Saying explicitly, “Can I ask a question?”. (It can be especially useful if you say the person’s name, because then it’s easier for them to know you’re talking to them.)
  • In some contexts, raising your hand is an effective way to get someone’s attention. It’s likely to be perceived as childish though, and people will often laugh at you for it. But it does often work.

Ask questions through email, texting, IM, or phone calls:

  • Sending a message one of those ways automatically implies that you’re trying to get that person’s attention
  • So it replaces the eye contact and other body language things you might be having trouble with
  • If you’re asking email, it can help to put “question” or “time-sensitive question” in the subject
  • (Or something context specific like “Wednesday plans?”, “Need some background for the hamster project”)

Do any of y'all know other things that get in the way of people noticing questions, and potential workarounds?

Alternatives to repeating “What?” if you can’t hear someone

I’ve been in this situation a lot, and it becomes very awkward very quickly:

Person: “Kljiuojhuihph.”

Me: “What?”

Person: “I said, laskgoperhtoiuhuhgb.”

Me: “I… what?”

Person: “Adkjgpohett!!”

Me: “…What?

Person: “Oh, never mind.”

This is a waste of breath for everyone. It’s also quite frustrating if you genuinely care what the other person is saying, because you know there is something there and you can’t tell what it is. Finally, it annoys the other person in the conversation.

Basically, the goal in this situation is to get the other person to tell you what they are saying, in a way you can understand, without annoying them.

My suggestions for this situation are:

  1. Instead of repeating “What?” try using different phrases. “Say again?” “I’m sorry?” etc. This is especially good because some people think “What?” is rude, for some reason.
  2. If you think you know what they said, but aren’t sure, it can be good to ask them “Did you just say ______?”
  3. After 2-3 times that you haven’t been able to hear the answer, suggest an alternative. “Can we talk about this outside?” or “Can you write it down?” (or sometimes “Can you spell it?”) or “Can we talk about this later?” followed by an explanation (“It’s too loud in here” “I’m deaf in that ear” etc, or simply “I can’t hear you”) work for me.

I hope this helps.

When you don’t understand tones of voice

anonymous asked realsocialskills:
Love your blog! I’m an Aspie/NLDer and 25. One of my biggest problems is understanding tone of voice. Like I can’t talk on the phone. Everything gets lost on me. As a result, I never know if people are joking, being serious, are mad at me, etc. It’s very frustrating for the other person and even more so for me. Do you have any advice? Do you know of any good websites that help people with this?

realsocialskills said:

  • TV shows can be a good way to learn about tones of voice
  • Partly because they have predictable tropes, so it’s easier to have a sense of what’s probably going on than in real conversations
  • It’s also possible to watch the same episode over and over in order to learn new things from it.
  • Once you already know what happens, it can be easier to pay attention to other things like tones of voice and other conversational cues
  • Watching TV can also give you useful scripts and phrases
  • Tropes happen in real conversations too; understanding the tropes can make conversations easier to follow

Some specific thoughts about which shows might be helpful:

  • Shows made for teenagers in the 90s tend to have a lot of telephone conversations. Often, both people are visible, so you can also watch facial expressions.
  • If you have trouble telling TV characters apart, try watching cartoons made for adults. (kids cartoons often don’t have enough dialogue to be helpful).
  • Futurama, The Simpsons, and King of the Hill are particularly good for this because large parts of the shows are about conversation
  • Community is also a good show to watch. It’s easier to tell the characters apart because they actually all look different. A lot of shows have identical looking white people with the same haircut, clothing, makeup, voice and mannerisms.
  • Community is easier to follow because the characters look different in *all* of those ways. The main characters all have different skin, faces, hair, clothing, voices, and mannerisms. 
  • Community also has a realistic autistic character who successfully interacts with non-autistic characters. Watching him interact might help you figure out stuff about interacting

Use alternative means of communication:

  • Not everything has to be done over the phone
  • Sometimes it’s easier to use email or text conversations, or to meet people in person
  • It’s ok if that’s what you need.
  • I hardly ever use the phone socially except to arrange other kinds of interaction, except when I’m talking to a couple of people I know really well
  • Sometimes you can avoid incomprehensible phone conversations by claiming that your phone’s reception is bad. People usually believe that. It’s not even really a lie - it’s just that the reception problem is taking place between your ears rather than between the phones
  • You can also let your phone go to voicemail and text back instead of calling back.
  • Or say things like “I’d really like to talk to you, but this isn’t a good time. Can we get together sometime next week? How about Tuesday?”
  • If you understand body language at all, you might find that Skype is more usable for you than the phone

I don’t know of any effective resources effectively aimed at helping people to understand tones of voice. I suspect that they don’t exist, given what I know of how these things tend to be presented to autistic people. Social skills classes are usually oriented towards making people seem acceptable by following rules. They should be oriented towards helping people to understand things well enough to interact on their own terms, but they generally aren’t. Also, autism tests involving tones of voice are exceptionally ridiculous. 

I could be wrong though. Do any of y'all know of any useful resources that teach tones of voice explicitly?

fourloves:

Social skills for autonomous people: Acknowledging power

realsocialskills:

When you have power over someone, it’s important to acknowledge it. If you don’t acknowledge that you have power, it’s hard to examine your use of it. If you’re not paying attention to how you’re using your power, you will come to abuse it, and you won’t notice.

Sometimes, when people are…

This post made me think, I call my client my boss sometimes (I’m a PA to a profoundly disabled woman). It’s not totally a joke because I do think she should be in charge and her parents encourage me to do what she seems to like. But I know that most people wouldn’t call her my boss so it’s kind of cutesy for me to call her that and also…she can’t directly fire me or even tell me what to do a lot of the time because she can’t talk, write, or use AAC consistently.

I don’t like terms like “caregiver” because that doesn’t include the idea that I should be helping her do what she wants (not just “taking care of her” like you would say about a baby). But this post made me think that calling her my boss is a little much and maybe a little insulting. Not just because it implies things she can’t do but also because it sounds like a joke and makes a joke of the idea that her preferences are important. (It’s better to just say I am her PA/aide/assistant which is a more normal term, but also implies what I want to imply.)

That’s interesting. I get the sense that there’s a lot more to be said and thought about there, but I don’t know enough to say it.

If anyone who does wants to weigh in, that would be most appreciated.

Using TV/movies to get phrases

Using TV/movies to get phrases

Words and phrases can be hard to come up with. Sometimes, it’s easier to use phrases that someone else already came up with. 

Some shows, books, and movies are particularly good for this. Here are some I have found useful in this regard (do not take this as an unequivocal general endorsement of the content):

Shows and movies

  • The Simpsons
  • Futurama
  • Community
  • King of the Hill
  • Spongebob Squarepants
  • South Park
  • The Princess Bride

Books:

  • Harry Potter
  • The Hitchhiker’s Guide to the Galaxy
  • The Bible
  • The Enchanted Forest Chronicles
  • Ella Enchanted
  • Discworld series
  • 1984
  • Stranger in a Strange Land

Picture books:

  • The Elephant and Piggie series
  • George and Martha series
  • Frog and Toad

What are some books/TV/media that you get words from?

methods for making words come out

methods for making words come out

Some things that work for some people who sometimes have trouble making words:

Typing

  • Sometimes text-based communication works better
  • Sometimes using email or instant messaging or text messaging will make you able to use words when you couldn’t do so with your voice
  • When that doesn’t work, sometimes typing random nonsense or quotes or something can get you into a mode in which you have more words to use

Speech

  • Sometimes if you can say any word or phrase, it makes other words start working
  • For instance, saying lines from a book or TV
  • Or, frustratingly, sometimes explaining inability to speak makes it easier to speak
  • If it’s a particular word you can’t find, describing the thing can work

Sounds:

  • Sometimes making sounds that aren’t words works as expressive communication
  • Sometimes making sounds can make words come after

Moving

  • Sometimes waving hands can help make words come out
  • Or making gestures of other sorts, like pointing at things