He’s one of those kids that people (myself included, I’m embarrassed to say) inevitably describe as being “in their own world.”* But that’s not true at all. Better to say that he perceives and interacts with the same world we do… he just does so very differently than most of us. We don’t “speak” the same mental language, and many things that most people take for granted just aren’t on his radar. I suspect that plenty of things that are obvious to him pass us by completely, too. He doesn’t often make eye contact, rarely looks at something that someone is pointing at. He doesn’t do social smiles, or acknowledge when people arrive or leave, or have any verbal language. It’s hard to remember sometimes that he’s actually very observant and quite clever.
He’s a musical kid. Hums a lot, whistles better than I do, and does some reasonably good bird calls. He vocalizes a fair bit, especially when happy or excited. But he doesn’t use many speech sounds, and almost no consonants. With one exception. One of his happy verbal stims goes something like this: “bee-bee-bee bee-buh-bee…”
I wondered about this for a while. Why “bee?” Granted, “B” it is one of the early consonant sounds babies learn, but usually after “Mama,” at least, and it’s usually “Bah” rather than “Bee.” “Gah” and “Dah” are also learned early, but I’ve never heard him say either of those. When the most likely answer finally popped into my mind, I couldn’t believe it took so long for the idea to occur to me.
See, he’s from a multilingual household, and the most commonly spoken language at home is… Arabic. Where the standard term of endearment is “habibi” (ha-bee-bee), which means “beloved.” His parents and grandparents and so on use his name as well, of course, but very often he is addressed as “habibi,” especially when people are happy with him.
It’s wonderfully endearing to me that, out of all the things he hears on a daily basis, this is the one he has chosen (consciously or not) to mimic. Maybe it’s his way of saying “I love you” back to his mother, to his family, to the world. I don’t know. But it sounds even more joyful now that I know its origins.
Bee-bee-buh-bee indeed, dear child, bee-bee-beeee…
* Autism expert Judy Endow writes on why she dislikes that phrase: http://www.judyendow.com/autistic-behavior/we-are-not-in-our-own-world/ http://ollibean.com/autism-and-measuring-normal/
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?”
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.)