Archive

Archive for April, 2016

Communication can look like this

This story happened as I was finishing up babysitting one day..

My client that day was an autistic boy in elementary school, minimally verbal, and very bright… but who struggles with making himself understood. Mostly over the past year, he has acquired a scant handful of verbal words and phrases that he can use independently, and slightly less fluency with an AAC program on a dedicated tablet.

It was evening, and his parents had just returned. Kiddo ran up to them excitedly.

“Go!” he exclaimed. (That’s a request — he says it when he wants to go somewhere.) Perhaps he was jealous that his parents got to go out and he didn’t!

“Where?” we asked.

“Go!” he insisted, and started trying to force Daddy’s shoes back onto Daddy’s feet.

We’re working on getting him to use the AAC more. Among other reasons, his fine motor skills are far ahead of his vocal abilities. I keep hoping he’ll learn to type soon.

I brought the device to the doorway, where Kiddo was trying (unsuccessfully) to hold Daddy’s leg in place as Daddy started down the hall away from the door, still asking “Where do you want to go?”

“Cah!” (Car). That’s an answer, and a good one, but not entirely sufficient for planning an excursion.

“Where do you want to go after that? Where do you want to go in the car?”

“Go!”

Back to square one. This conversation went on for a few more rounds, with minor variations.

Lately, I’ve been trying to model AAC use myself. I will type something, then hand the device over. Sometimes I get a response, which is wonderful.

So I entered “Where do you want to go?” and had the device read it aloud (I need to find out if there are proper terms for all these things one does on an AAC device!).

I handed the device to Kiddo.

“Wheh-du-oo-wahn-go?” he mimicked.

I hate when this happens. I know he understands a lot, if not all, of what we say around him. And he is making progress with speech. But, as part of that process, he’s also been turned into a bit of a parrot. He’s so used to being told “repeat after me” and so forth that some part of him assumes it’s a requirement to try and say anything that is said to him. And this can get in the way of actual communication. It’s very sad whenever that happens.

I changed the sentence to “I want to go to…” and I had the device read it out loud. I open the “places” page, and handed it over so he could fill in the blank.  He backed out of “places,” went to “vehicles,” and selected “car.”

“I want to go to the car,” said the device, and he half-echoed the sentence.

“Ok,” I said, “You want to go to the car.”

His response wasn’t what we expected, but it was clear enough. Daddy and I shrugged.

“Maybe he doesn’t have a particular destination in mind,” I said to Daddy.

“Maybe he plans to decide once we’re in the car,” Daddy said to me.

Maybe he wanted Daddy to choose an outing. Maybe he just wanted to go for a nice relaxing drive with his Dad. Maybe he hoped Daddy would take him somewhere fun, or stop along the way for fast-food, which happens on longer car trips. Maybe he wanted to go somewhere he doesn’t have the words for.

We didn’t need to know exactly what he was thinking, though of course that would be nice. He got his message across, and we acknowledged it and stopped trying to get him to respond a different way. You have to have this kind of mental flexibility when language is limited. Questions aren’t always answered in the way that you expect.

It’s a fine line to walk between extrapolating based on what you know about a person and “putting words in their mouth” — assuming you know what they intend to communicate. You help someone bridge the gaps, without taking over and steering the communication yourself. It’s a delicate collaboration… And when it works, it is absolutely beautiful.

(Coda: It was time for me to leave at that point, so I have no idea if there was an outing, or what it might have been, or whether it got put off until the next day because it was already too close to bedtime. But I do know that Kiddo told his Dad something, and Daddy understood, and so I went home with one less worry in my heart.)

Happy to say

Categories: Disability Rights

Autism Acceptance can look like this

April 7, 2016 1 comment

At an amusement park, I wait in line with my 9-year-old client for a favorite ride. He flaps excitedly, makes little noises to himself. There’s a girl just ahead of us in line, about his age, with her mother. The girl looks at us with apparent curiosity, but not judgement or scorn or fear like some kids do. After a quick whispered exchange with her Mom, she turns to me.

“Is he Deaf?” she asks politely. I suspect she knows someone who is. I smile at her.
“Actually, no. He’s autistic. He can hear just fine, but he can’t speak.”

“Oh.” A bit of surprise there. She still looks intrigued. I look for traces of pity in her face and don’t see them. Good. I offer his name, and the Mom introduces the girl.

“Everyone’s got something special about them, right?” Mom adds, turning back to her daughter. She’s pretty relaxed about the whole thing too. The “everyone is special” line is a bit twee for my taste, but I’ve found that it works really well as an explanation for kids, and it’s so much better than some of the things I’ve heard. So I smile at Mom, too.

And I smile at my client. “It definitely makes him a very interesting person, and I really like that. He looks at things differently from most people, and helps me see things differently too sometimes.”

“That’s wonderful,” says the Mom. Then, to her daughter, “We need people who think differently. The world would be a pretty boring place if we were all completely normal, wouldn’t it?” The girl nods, and so do I.

The line moves forward, and we board the ride.

I don’t know if my client was listening to our conversation, or what he thought of it. But I’d be happy if most of what he overhears people say about him is along these lines. It’s little. It’s simple. They smiled, took what I said at face value, and didn’t condemn it in any way. That may be little, and simple, but it’s also priceless. Why can’t more “normal” people be like that?