kids

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.

Open letter to disability professionals

thetallestofhobbits:

realsocialskills:

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals - please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

thetallestofhobbits said:

All of this is why I try really hard to be straightforward with my students. I know how it feels to hear the Try for Try’s Sake speech, and I hated it.

When my kids say, “I can’t do this” or, “I suck at this,” I try to say, “I can help you do it ” or, “Let’s see if we can use what you’ve done.”

Disability professionals police language because the narrative is that if a disabled kid gets into the habit of thinking “negatively” about their level of ability related to a particular skill or subject, they will lose the motivation to attempt it, and because accessible education does not keep pace with the attitudes of disability communities about what we as members believe is reasonable about supporting full and equal access to education, we are often forced to police attitudes because we as professionals can’t be seen to “enable” a disabled person’s “failure” by not pushing them to try.

In no way do I mean to imply that this attitude is healthy or positive. It is not. But, until the narrative about supporting disabled people changes to more accurately reflect the attitudes of actual disabled people instead of abled people who think they speak for us, we’re stuck with this.

autistic teachers?

Anonymous said to :

Do you perhaps know of any resources for autistic teachers who work in inclusive schools? We rely on scripts a lot so when a child has different needs regarding communication I for example simply freeze and can’t come up with anything.

realsocialskills said:

I don’t know of any resources specifically for autistic teachers.

One thing I do know is that it’s important to respectfully acknowledge when you don’t understand something your student is telling you. It’s important to respect their communication enough to be honest about when you do and don’t understand.

Specifically, it can help a lot to say something like “I care what you’re saying, and I don’t understand yet.” or “I don’t understand what you’re saying, but I do care what you are saying.“

That affirms a few important things:

  • You know that they are trying to communicate something to you
  • You know that you aren’t understanding it
  • You respect them enough to think that it matters what they are saying
  • You care what they’re saying, and you want to keep listening
  • You know that you are responsible for figuring out how to listen
  • You’re trying, and you’re going to keep trying

This is important as a way to show respect. It’s also a way to tell people that there’s a point in communicating – that you’re not ignoring them and if they can figure out how to tell you what they mean in a way you can understand, you will listen.

A lot of people give up on communication because they’ve become convinced that no one will ever care about what they’re saying anyway. That’s a problem you’re probably in a position to mitigate, at least a little.

There are also a few things worth knowing about:

tl;dr If you’re responsible for teaching someone, it’s important to be honest about when you do and don’t understand their communication.

Anyone else want to weigh in? Autistic teachers who teach kids with disabilities - what have the communication barriers been? What’s working in overcoming them?