lysikan:

realsocialskills:

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?

 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. 

@clatterbane‘s tags:
#communication#still not sure about telling kids what they must be feeling#maybe especially if they’re having trouble communicating this on their own#phrasing it as a possibility might help avoid some problems? idk 

I agree. Don’t tell me what I am feeling. Give me options. “You want the truck?” Even if I nod, do not assume I mean yes. Find something else about the situation you can ask, such as “Is the truck in your way?” or “Is the truck bothering you?”. Quite often those of us who are completely nonverbal will nod in response to almost anything that sounds like a question, so you will have to work at figuring it out – do NOT take the first affirmative response.
And don’t patronize us at any age – do not tell us what/how we feel or want. Do not. Phrase it as a possibility or a question. Ask, even if you have to do it in multiple ways to get to the truth.

myceliorum:

butterflyinthewell:

myceliorum:

chavisory:

Wow, okay.

I know that there are autistic people who cannot, presently, communicate in a way that we know how to understand well.

I have never and will never say that autism isn’t a disability or that no one can be profoundly disabled by autism.  Never.  I do not know who you think I am, but I am not one of those people.  A perusal of my blog on the topics of autism or disability would’ve told you that.  I consider myself disabled by autism, and most of the autistic people I know do.

I know that there are completely non-speaking people.  Many of them are able to use other methods of communication, like AAC devices, letter boards, ASL, or sounds and gestures.  Some are not.

I know that there are autistic people who we have not found an effective way to communicate with yet.

The key word there is “yet.”  When I say “we can do better for non-verbal autistic people,” what I mean is that I consider us generally–the advocacy world, the research world–to be morally bound to keep looking for communication methods that could help those people and keep trying to understand what their specific obstacles are and how to work with them.

“Some people just can’t communicate” doesn’t cut it.  We have not even come close to a situation in which all non-speaking people have access to AAC if they need it (about half of non-speaking adults do not), and in which most researchers and clinicians take seriously the capacity of many non-speaking/non-verbal people to think and communicate if their specific challenges and needs can be understood and met, or autistic-reported issues that may impact communication ability like movement disorders, exposure anxiety, and auditory processing disorder.  Though oral motor apraxia is one thing that is starting to be taken seriously as a common barrier to speech in autistic people.

It’s not that you personally just aren’t trying hard enough!  But when people close to a non-speaking person have already decided, or been told and believed, “this person does not communicate,” when this is a pervasive prejudice about non-speaking and non-verbal people, that puts you at risk of not seeing genuine attempts at communication as communication.

“Totally non-vocal” does not mean non-communicative.

I don’t know if you know, but every year for the past couple of years now, a tweet chat called #AutINSAR (#AutIMFAR in 2017) has been held during INSAR, which is the biggest annual conference on current autism research, to put autistic people directly in touch with researchers to talk about research priorities and goals.  And something that always tops the list of priorities that autistic people wish research would pursue is better and more available AAC, and how best to enable people with the most intense communication challenges.

Instead of continuing to throw millions and millions of dollars at trying to make mice autistic.

That is what I mean when I say “We can do better for non-verbal autistic people.”

Not that it is going to be easy or magical or somehow we will be able to turn every non-speaking person into someone who can communicate conventionally and articulately.

But we can do better than writing off non-verbal people as “just can’t communicate,” and we need to.

I agree with everything that has just been said. So what I’m about to say is not meant to be a contradiction in any way. It is only meant to highlight another problem that also happens.

I have seen autistic people online who vastly oversimplify the communication issues some of us face. By which I mean I have seen people right here in the past. Who were talking to parents they did not know, about children they knew nothing about. And the parents said their child could not speak. And the response was basically, “Well, obviously you’ve never provided them with the means to type.” This was not something that just happened once. I have seen this over and over and over again. This idea that if you just give a nonspeaking person a keyboard of some kind they will just suddenly be able to communicate by typing in a way equivalent to a speaking person. Or be able to do so at all. And that if a person is not speaking or typing it was obviously because they’ve just never been given a keyboard.

And that is unfortunately ridiculous. Like blaming people for their child not having an easy time communicating in words that other people understand, without even knowing the people involved, is crossing so many lines I don’t even know where to start.

And I use augmentative communication myself. I am the vast majority the time nonspeaking and have been for a long time. I use both a keyboard and a picture based system. I understand what’s at stake without these communication systems available.

But communication problems are a lot more complex than handing someone another way to communicate. When I was capable of speech, I was much less capable of communication. My typing was more communicative than my speech, but not by a lot because the communication problems went deeper. And I had to learn certain things about receptive language before I could translate those things into expressive language. So I had very complex communication problems that were not always fully understood. And even though I now communicate fluently and with actual connection consistently between my thoughts in my words, there are still issues.

And those issues are not solved by keyboards or by Unity. They are more complicated than that. The same way that someone who speaks can have a good deal of communication problems, even ones where they look fluent but are not communicating their thoughts. You can have all kinds of communication problems that are not solved by getting someone a device of some kind.

And there are people who are not capable for lots of reasons of using any of the current devices. Some of those problems can be solved with better devices. Some of them cannot.

And some communication issues are solved by understanding how many ways there are to communicate out there. Because no matter how many communication issues I have had or not had, I have had ways that were easier and ways that were harder. Words of any kind are never going to be my first method of communication. They are what I am known for, for writing, but this is like not a second language, more like a fifth language. And the ways in which I communicate most naturally, and the most effectively, are still considered at best third-rate by most people. And there are people who can only communicate in those ways.

I can communicate by handing people objects.

I can communicate by arranging objects.

I can communicate by many different forms of music, and many uses of music.

I can communicate by how I react to my environment in a moment to moment way.

I can communicate by how my body moves.

I can communicate by very subtle variations in how my body moves, but that can normally only be picked up on by other people who communicate in the same way.

I can communicate by interactions with my physical environment.

I can communicate intentionally. I can communicate unintentionally. These are both communication.

I can do things that look exactly like communication and don’t mean a damn thing.

And it is only because I can do words sometimes, in ways that are undeniable, that I am acknowledged as communicating at all. If someone can’t do words, or can’t do words in a way other people take seriously, they can have all of those other means of communication and people won’t notice or give a damn. And there are lots of people in that boat. And not all of them will ever do words. And the only way to make the world okay for them is to understand how they communicate and acknowledge it as equal to anything we do with words.

I feel very strongly about this because in a very close alternate universe that could be me. And some of the time it is me. Because even at my best, words are not always there, and I am not always around people who know I can ever do words. And in those situations I am as vulnerable as someone who can’t do words. Even though I have the advantage, which is an extreme advantage, which is one reason I do this despite heavy costs, of using understandable language a lot of the time.

But I do feel like I need to speak up for people who communicate only in the ways that I best communicate. And who cannot and will not ever use words in any form.

Because they are important. They are people. They have full and important ways of communicating. And they are usually seen as nonspeaking non-typing noncommunicative. And that is all people see. They don’t see the richness of what they have. They only see what they don’t have. And they approach people in that position in terms of how much can we bring your communication towards something that looks like words.

Because that is what makes them comfortable. People are not comfortable with someone who can’t do words ever. Lots of autistic people are not comfortable even with the existence of people in that position.

And some people will never do words.

And some people will refuse to do words. Because some people will weigh up the costs, and determine that for themselves, words could never be worth what they will lose. This happens.

It’s not considered okay to acknowledge this happens. Because it comes very close to blaming people for not being able to do something. But it is more like weighing up whether going into the death zone of Mount Everest is worth it to you. And to most people it is not, for good reason. Some people will go into the death zone, but it’s a questionable decision. And some people will decide not to, but deciding not to is not the same thing as deciding flippantly that you don’t wanna eat carrots tonight or something. If you get the distinction in the kinds of decisions I am trying to talk about.

I do want to qualify that. Because there are people who very much have a total understanding of language, use language in their heads, want to communicate in language, and have massive issues with something causing them to not be able to simply type it out. And they from the outside can look exactly like someone who will never be able to use words. Who also, from the outside, can look exactly like someone who refuses to use words because for them words are the Everest death zone. And it is important to understand all of these people exist, all of these people have important communication needs, all of these people can look alike to outsiders, and all of these people are important and different from each other.

I had a friend for a long time who could not communicate by any standard means. She had many ways of communicating, but she could not speak, she could not type, she could not do picture symbols. She could not do any of these things in a way that communicated much of anything useful to her.

She wanted those things to work. If she saw a keyboard she would type on it very insistently. But she would type random letters. Then when it spoke out loud she would become frustrated because it was not saying her thoughts. She was well aware that handing someone a picture symbol was a means of communicating. She tried very hard and she could be very forceful about handing you picture symbols when she had something to say. And you could tell when she really wanted to say something because of her body language when she did it. But she could not choose the symbol that matched what she was thinking.

So she would hand you symbol after symbol after symbol, getting more and more frustrated. And eventually in all of these situations, she would start screaming and scratching herself. She had scars all down her arms from her own fingernails.

And I don’t know where the disconnect was. Whether it was cognitive or motor or something else. But there was an obvious disconnect. She was extremely frustrated by it. And it was obviously not solvable by doing anything simple.

Weirdly enough her staff saw her as not motivated to communicate. She was one of the most motivated people I have ever met. She invented her own means of communication from scratch, as far as I could tell, so she was motivated. She knew she wanted to say things. She could not get them from her head to outside her head. And this obviously made her extremely frustrated a large amount of the time.

And there are people online who do not seem to know that people like her exist. Or even really that people like me exist. Like they know I’m here. But they don’t know that I deal with complex communication problems of my own that are not fully solved by the addition of a communication device. That it’s not as simple as oh stick a keyboard in front of Mel and sie will communicate perfectly. That’s kind of how some people want it to be. They want all of us who communicate mostly by typing to be tidy that way. But most of us are not that tidy. Most of us are not that simple. Even when we are able to be fluent by typing.

So I agree with everything you’ve said for a number of us who are really working on this. And who really understand what is going on.

But I also know there are number of people out there who are woefully ignorant of the problems facing nonspeaking people, and nonspeaking non-typing people. And who literally want the solution to be, throw a device in our general direction and a miracle will magically occur. And if the miracle has not magically occurred it’s the fault of everyone around us.

Anyway, I have actually written about this before, and I wrote about it better. So you can also go here:

https://ballastexistenz.wordpress.com/2013/04/18/a-bunch-of-stuff-that-needed-saying/

And just read what I wrote there. But basically everything you’ve said is totally accurate for a large group of people who do know what they’re doing and do care a great deal about communication issues for people with autism labels.

I did though just want to add that there is unfortunately, as you probably know, a really large number of people out there who don’t get it. Who are autistic but just don’t get it about what some of us are dealing with in communication issues. They desperately want it to be simple. And unfortunately for them, and unfortunately for those of us they run into, it is not simple, and it does not work how they think it works. Some of them tried to treat me as if I am just like them only with a keyboard, and that just doesn’t work out. So that is unfortunately out there too.

^ This. And there are also people who don’t even try to offer alternative communication, so a person who can’t make their communications understandable never gets a shot at all. I try to shout for them to get some shots at it and be allowed to try different methods. Maybe a combination of two or more will work, maybe none will. But they deserve to *try* and many parents / caregivers don’t let them try.

Yeah that absolutely happens a lot. The people I’m talking about are specifically people who don’t even check to figure out whether someone’s tried other communication strategies before doing the yelling. They just literally assume if the person isn’t speaking, no other strategies have been tried. Yelling is absolutely appropriate under a lot of circumstances though. Especially when people refuse to try other strategies, that when I get pissed.

brighteyedbadwolf:

samayla:

coffee-alien:

“Imagine having a child that refuses to hug you or even look you in the eyes”

Imagine being shamed, as a child, for not showing affection in a way that is unnatural or even painful for you. Imagine being forced, as a child, to show affection in a way that is unnatural or even painful for you. Imagine being told, as a child, that your ways of expressing affection weren’t good enough. Imagine being taught, as a child, to associate physical affection with pain and coercion.

As a preschool special ed para, this is very important to me. All my kids have their own ways of showing affection that are just as meaningful to them as a hug or eye contact is to you or me. 

One gently squeezes my hand between both of his palms as he says “squish.” I reciprocate. When he looks like he’s feeling sad or lost, I ask if I can squish him, and he will show me where I can squish him. Sometimes it’s almost like a hug, but most of the time, it’s just a hand or an arm I press between my palms. Then he squishes my hand in return, says “squish,” and moves on. He will come ask for squishes now, when he recognizes that he needs them.

Another boy smiles and sticks his chin out at me, and if he’s really excited, he’ll lean his whole body toward me. The first time he finally won a game at circle time, he got so excited he even ran over and bumped chins with me. He now does it when he sees me outside of school too. I stick out my chin to acknowledge him, and he grins and runs over and I lean down for a chin bump.

Yet another child swings my hand really fast. At a time when another child would be seeking a hug, she stands beside me and holds my hand, and swings it back and forth, with a smile if I’m lucky. The look on her face when I initiate the hand swinging is priceless.

Another one bumps his hip against mine when he walks by in the hallway or on the playground, or when he gets up after I’m done working with him. No eye contact, no words, but he goes out of his way to “crash” into me, and I tell him that it’s good to see him. He now loves to crash into me when I’m least expecting it. He doesn’t want anything, really. Just a bump to say “Hi, I appreciate you’re here.” And when he’s upset and we have to take a break, I’ll bump him, ask if he needs to take a walk, and we just go wander for a bit and discuss whatever’s wrong, and he’s practically glued to my side. Then one more bump before we go back into the room to face the problem.

Moral of the story is, alternative affection is just as valid and vitally important as traditional affection. Reciprocating alternative affection is just as valid and vitally important as returning a hug. That is how you build connections with these children. 

This is so goddamn important.

I verbally express affection. A LOT.

My husband… doesn’t. I don’t know why. For the longest time part of me wondered if it meant he loved me less.

At some point I told him about a thing I had done as a kid. Holding hands, three squeezes means ‘I Love You’.

Suddenly he’s telling me I Love You all the time.

Holding my hand, obviously, but also randomly.

taptaptap

on my hand, my shoulder, my butt, my knee, whatever body part is closest to him, with whatever part of him is closest to me

All the time.

More often than I ever verbally said it.

It’s an ingrained signal now, I can tap three times on whatever part of him, and get three taps back in his sleep. Apparently I do the same.

It’s made a huge difference for us.

People say things differently.