This may just be my experience as an autistic person, but the kids I’ve nannied whose parent’s complain of ‘bad awful in cooperative selfish autistic behavior’ are… Not like that? At all?
Like, for example, I cared for a kid for a while who was nonverbal and didn’t like being touched. Around six years old? Their parent said that they were fussy and had a strict schedule, and that they had problems getting them to eat. Their last few nannies had quit out of frustration.
So, I showed up. And for the first little while, it was awkward. The kid didn’t know me, I didn’t know them, you know how it is. And for the first… Day and a half, maybe? I fucked up a few times.
I changed their diaper and they screamed at me. I put the TV off and they threw things. Not fun, but regular upset kid stuff.
Next time, I figured, hell, I wouldn’t like being manhandled and ordered around either. Who likes being physically lifted out of whatever it is they’re doing and having their pants yanked off? Fucking few, that’s who.
Next time, I go, ‘hey, kiddo. You need a new diaper?’ and check. ‘I’m gonna go grab a new one and get you clean, okay?’ ‘Wanna find a spot to lay down?’ ‘Alright, almost done. Awesome job, thanks buddy’.
I learned stuff about them. They liked a heads up before I did anything disruptive. They didn’t mind that I rattled of about nothing all day. They didn’t like grass or plastic touching their back. They were okay with carpets and towels. They liked pictionary, and the color yellow, and fish crackers, and painting. They didn’t look me in the face (which was never an issue- I hate that too, it fucking sucks) but I never had reason to believe that they were ignoring me.
Once I learned what I was doing wrong, everything was fine. Did they magically “”“become normal”“” and start talking and laughing and hugging? No, but we had fun and had a good time and found a compromise between what I was comfortable with and what they were comfortable with. (For the record, I didn’t magically sailor-moon transform into a socially adept individual, either. In case anyone was wondering.)
I don’t like eye contact. It’s distracting and painful and stresses me out.
They didn’t like eye contact either.
Is eye contact necessary to communication? No. So we just didn’t do it.
Was there ever a situation where I HAD to force them to drop everything and lay down on the lawn? No. So the thirty second warning came into play, and nobody died.
“But they never talked!”
No, they didn’t. And they didn’t know ASL, and they didn’t like being touched.
So you know what happened?
My third day in, they tugged on my shirt. ‘Hey monkey, what’s up?’ I asked. And they tugged me towards the kitchen. ‘oh, cool. You hungry?’. They raised their hands in an ‘up’ gesture. ‘you want up? Cool.’ and I lifted them up. They pointed to the fridge. I opened it. They grabbed a juice box out of the top shelf, and pushed the door closed again. ‘oh sweet, grape is the best. You are an individual of refined taste.’ I put them down and they went back to their room to play Legos.
“But they didn’t say please or thank you!” “But you should be teaching them communication skills!” “But!” Lalalalala.
1. The entire interaction was entirely considerate and polite. I was never made uncomfortable. I was made aware of the problem so that I could help them solve it. There was no mess, no tears, no bruises, no shouting.
2. Did my brain collapse into a thousand million fragments of shattered diamond dust out of sheer incomprehension? No? Then their communication skills were fine. Goal realized, solution found, objective complete. They found the most simple and painless way to communicate the situation and then did it.
Kids are not stupid. AUTISTIC kids are not stupid.
I’m willing to bet real cash money that the real reason the last few nannies had quit had a million times more to do with their own ability to cope, not the kid’s.
To this day, that was the most relaxed and enjoyable job I’ve ever had.
And I know I don’t speak for everyone. All kids are different. All adults are different. But in my time and experience, pretty much 95% of all my difficulties with children come from ME not being understanding enough. Every single “problem child” I’ve worked with turned out to be a pretty cool person once I started figuring out how to put my ego aside and let them set the pace.
Again, not speaking universally, here. I’m just saying. Sometimes social rules are bullshit, you know? People are people
Have you ever read an article about the study that found that teaching the parents to cope with autistic kids yields better results than other therapies? Because this is exactly what they were talking about.
this is a fantastic short term solution. but what happens when that child goes out into the real world as an adult and has no verbal communication skills and still doesn’t know how to properly transition between activities? by not teaching them coping mechanisms you put them at a distinct disadvantage compared to the rest of their peers and I don’t think that’s fair.
Okay, first off, I don’t want you to feel that I skimmed your argument and chose to disagree on principal. I feel that I have read and understood your point of view, and am actively putting thought into composing a thoughtful response that conveys my perspective on the subject.
You have asked me what happens when an autistic child “goes out into the real world as an adult and has no verbal communication skills”.
The thing is, there are many adults who live perfectly well without verbal communication.
There are adults with hearing impairments who can’t verbalize their intentions.
There are adults with anxiety disorders who can’t verbalize their intentions.
There do, in fact, exist autistic adults who can’t verbalize their intentions.
I would not personally agree that forcing a child or adult to talk out loud -when it very obviously causes them stress, or when they are unable to do so- is a coping mechanism.
I would argue that a coping mechanism is something that one does to alleviate their own stress, not the stress of others.
Just as well there are, right now, at this very second, any number or real-life adult autistic people who actually do, at this minute, have a hard time transitioning between activities. I’m sure you could ask them what that’s like and you’d get a great number of autistic adults who do exist in the real world willing to tell you.
I’d like you to ask yourself, and I sincerely don’t mean to be condescending, a really quick question:
Is the problem Them, or is the problem You?
Furthermore, is there even a problem at all?
What I mean for you to ask, is: Is there a problem, or did you create one by being unwilling to compromise what makes you, personally, comfortable?
Are they doing something wrong, or are you valuing tradition over someone’s health and wellbeing?
Which is more valuable to you, in a society?
No child is ready to walk out and live life as an adult in the ‘real world’. That’s why they’re children. Raise them, whoever they are and whatever that means, into an adult who’s confident and kind. Let them speak to people who understand them, not just people who’ve studied them, because there is a difference, and children need more than anything to not feel alone. Everything else is secondary.
I was a picky eater as a kid. Like really, really picky; ARFID wasn’t a thing back then, but if it had been I might’ve been diagnosed with it.
My parents never forced me to eat anything. They encouraged me to try new foods, and when I got a bit older we had a system where I would get cheesy popcorn (one of my favorite snacks) in exchange for trying a bite of a new food, but they never forced me. They fed me foods that I would eat to make sure I got enough calories.
Eventually, I did broaden my diet. It is still pretty restrictive, due to anxiety and food sensitivities in addition to the sensory issues, but it’s a complete diet. All of the people who said I would end up surviving on pizza and goldfish crackers forever if they didn’t make me eat other stuff were wrong.
You know what did leave a lasting impact, though? The people who would say that. To me, or to my parents right in front of my face. Extended family, concerned lunch supervisors, and kids at school who would tease me for not having a “real” lunch, eating at the wrong speed, whatever it was. To this day, I get anxious eating in front of people outside of my immediate family and friends group, even if I’m pretty sure they’re not going to judge me.
Would my parents forcing me to eat the same things as everyone else have avoided this judgment from other people? Maybe. However, the impact of that almost definitely would have caused even more harm, and possibly even malnutrition (the logic of “they’ll eat it if it’s the only option” doesn’t work so well when eating said food is physically terrorizing for the kid).
We live in a world that is often deeply cruel to disabled people, and this should absolutely be a consideration when raising autistic kids, but the solution is not to “teach them to be normal.” Approaching kids with understanding and empathy, meeting them where they’re at, and treating them as human beings will ultimately create the healthiest foundation for helping them navigate the world.
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?”
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.
(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.
[ screenshot of a hashtag saying “How do I get my brother out of there? Superhelpful/genuine” ]
A good question!
(and I hope other self-advocating autistic adults can weigh in on this too. The mind of a community is stronger than any individual. )
What comes to my mind:
(and feel free to simply hand this post over to them if that’s easier)
start a conversation with your guardians that involves showing them some links to autsitic articles and research. There are some actually linked in the original post above ^. Videos may help too. Here are three great examples by autistics:1,2,3
Please don’t feel like any of this is your responsibility though. Really, its terrible when any child feels responsible for the learning process or unlearning process of the adults in their lives- because you aren’t! And if your guardians decide to avoid or dismiss the information - that’s not your fault!
But let’s assume they are open to starting this dialouge and to listening to the autistic community… They are probably, at first, going to feel bad, and sometimes guardians will shy away from their guilt by insisting that nothing is wrong, or that its not actually “that” bad, or that their specific case is “different” or “fixed” for x,y, z reasons… Because there are no pleasant truths about any form of ABA, and its hard for guardians to come to terms with the fact they made a mistake so important.
So, speaking directly to any adult guardian who may be reading this:
—–
“We (the autistic community) forgive you”
We forgive you because you made what you thought was the best decision, with the best understanding you had at the time. Now that your understanding is starting to change, what matters is that you continue to make the best decisions you can. Even if that means trying to find new paths, or acknowledging old wrongs.
Being the parent of an autistic kid *is* hard. Not because we are burdens (we aren’t), and not because there is anything wrong with us (there isn’t). But because there is more misinformation about parenting an autistic child than real information, and certainly less real information than there is for parenting an allistic (non-autistic) child. And everywhere you look, you will find autsitic adults who wished their parents had known more, or had done more once they had known more.
We have a lot of anger when we watch allistic parents make the same mistakes that ours did. But we have lot of love and RELIEF, when we watch our voices finally being heard and other allistic parents listening. It feels like catharsis. Like maybe everything we went through finds some healing when it finally saves someone else.
Because make no mistake, even if you don’t believe your ABA place is using shock therapy, or is using physical force, or is using verbal attacks, or emotional neglect…. even if its *just* allistic adults in a room with autistic children trying to reward them for “good” behavior - that’s enough. That’s plenty. That’s why we say “#yes, all ABA”. No autistic kid can learn to be their fully realized autistic adult self if their childhood was spent learning that their natural autistic traits needed to be hidden or exchanged for neurotypical ones.
So thank you parent… grandparent… guardian… For listening, standing with us, and doing the work.
ALT
