I just got finished reading this excellent article: http://www.assistiveware.com/are-our-assumptions-about-autism-and-aac-all-wrong
Fortunately, I’ve only once seen a case where an autistic client’s AAC was used in the horribly restrictive way that this article warns against. I have also been privileged to witness some wonderful AAC uses, and I’m in the process of learning how to encourage even more.
But let me back up a little here and tell a story.
The family cat enters the living room and my client perks up and points.
“At!” He says excitedly, “At!”
“Yes,” I say with an encouraging smile, “That’s a cat.”
“At,” he repeats.
“Cat,” I agree. A few minutes later, just in case I had forgotten, he points at the kitty again.
“At! AT! AT!” He looks extremely proud of himself, as though he has just discovered (or possibly invented) the entire idea of cats.
“You’re so smart. It IS a cat.”
“Yow,” he adds, grinning from ear to ear.
“Yes! Cats say meow!”
“Yow. Ow. At.”
“I see that.”
This client wasn’t one of my Respite kids. He was a typically developing toddler. And I suspect anyone who has ever had a toddler has had many conversations of this type. This is by way of reminding you what “normal” language development looks like. Lots of labeling. Lots of repetition. Lots of speech that, while not meaningless, seems rather purposeless.
So why on Earth, when an autistic child does this on their AAC, do people call it “stimming” and take the device away? Or worry that it is inappropriate, problematic, or inhibiting learning? And even if they don’t object, they certainly don’t engage and respond, much less encourage. And I think they should.
A client with some fine motor difficulties forms odd sentences on a device, inserting the word “iPad” at intervals, so it might read something like “iPad I want iPad park iPad swings.” Watching this, I develop a theory. I think the “iPad” button is being used as a home base, a starting point, a reference. “I know how to get to the ‘park’ button from ‘iPad,’ so I’ll make sure I start at ‘iPad’ first.” This 7-year-old had invented a strategy to help overcome difficulties with motor planning… a strategy that could easily be overlooked or considered a “mistake.” Kids are often much smarter than we give them credit for.
A pre-teen client relaxes on the couch, casually exploring her AAC program. She has a lot of pre-programmed phrases. “Hi, how are you?” “I’m fine.” “My name is Suzanne.” “Call me Suze.”
“Hi Suze!” I say. I want to acknowledge her words, even though I don’t think they are actually directed at me.
“How are you?” The device asks, and she answers it herself, verbally. “I’m good!” It looks almost like she’s having a conversation with the device… Talking to herself, as it were. Maybe she’s got an imaginary friend. Or maybe she’s practicing. I used to practice saying things in the mirror all the time. This kind of “non-meaningful” device use has never interfered with her ability to also use the device “properly” for communication. And she’s enjoying it. People learn better when they’re having fun.
“My name is Suzanne.” says the device. “Call me Suze.”
I’m making toast for an 8-year-old client while his family relaxes in the next room. This kid is very smart, but doesn’t use AAC as much as we’d like. I suspect it feels very limiting to him, as he’s a very precise person. But he finds ways to work around the problems. Sometimes they are downright ingenious.
“I want to eat toast toast toast.” says the device.
His Daddy smiles and sighs, “Don’t worry, buddy, you’ll get your toast. She’s making it for you.” Daddy thought he was just asking for toast. Again. Three minutes after the last time he asked. Daddy thought he was pestering.
“Yup! Toast coming right up!” I enthused. I thought he was just excited. I figured this was his way of saying “Yay! Toast!”
His 10-year-old brother, however, understood something that neither of us adults (both of whom are pretty close to him) even considered.
“He’s telling you he wants three pieces of toast.”
Oh. Toast toast toast. Three toasts. Of course. I’m so glad there wasn’t a therapist there to “correct” him. The repetition had a specific meaning. I wonder how often we miss the messages intended by the WAY in which our clients use AAC, messages we probably dismiss as quirks, oddities, or mistakes.
A year later. The same client has a newer AAC program, one with more flexible grammar and a much larger vocabulary. But he still doesn’t use it for much besides simple “I want” statements. And I don’t know how to encourage it, but here are a few things I’m trying:
- Using the device myself, in his presence. It’s hard, and time consuming, trying to express thoughts this way. Several times I’ve told myself I’ll only use the device and not speak for a given length of time… and invariably, I’ve failed and resorted to speech. That tells me a lot about why exploring the device during downtime is so important. You need to learn your way around so that when you actually want to say something to someone, it doesn’t take you ten minutes to locate all the words you need. I’ve said serious things and silly things and simple things. “I like music.” “I know this is hard work.” “You rock!” I’ve used it to ask him questions. He doesn’t answer often.
- Inputting the beginning of a sentence, such as “I like…” or “I feel…” and handing him the device so he can finish the statement. He’s done so once or twice. Not usually, though.
- Carrying the device around, and handing it to him when he seems to be trying to express something. What active 10-year-old is going to walk around holding something that size? Or any size? Something that fits into a pocket might work. Or having the device always set up in a specific spot so he can run over to it whenever he needs to. That can work at home and school and maybe the playground, but I realize that it’s a serious logistical issue. If you had to put in the effort of finding something or going to another room every single time you wanted to say something, how often do you think you’d bother for minor things?
He and I relax at the laundromat while his Mom goes to pick up his brother from practice. We both enjoy watching the laundry go around, hearing the regular swooshing of the machines. I find “washing machine” on his device.
“Washing machine. Washing machine.” Verbally, I add “I like watching the–” and complete my sentence on the device. “Washing machine.”
He looks up from the machine he is currently watching. I hand him the device, show him how to navigate to the “washing machine” button, under Appliances.
“Washing machine.” He says, then puts the device down.
“Washing machiiiine” I repeat verbally, drawing the word out, exaggerating. I giggle and he smiles. I pick up the device and find “dryer” next to “washing machine,” with an identical picture.
“Dryer dryer dryer.” I write. He looks at me, smiles. My own voice echoes the device. “Dryer.” I point at the dryers in the laundromat, even though I’m quite certain he already knows which is which. I hand him the device. I point to the button that says “dryer” and repeat the word verbally again.
“Washing machine dryer washing machine dryer dryer dryer” he writes.
“Cool,” I say verbally, “I like watching the washing machine too. And the dryer. But especially the washing machine.”
Doesn’t this conversation sound… familiar?
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.)
Tangles and I had a wonderful moment of communication today. I was hanging out with her this morning while her mother came and went running errands. Tangles and I were both pretty tired, so we curled up together on the couch, just relaxing, doing her special fist-bump.
She likes touch, so I started rubbing her shoulders. I couldn’t tell whether or not she was enjoying it, so I said “You know, it’s ok to tell me to stop if you don’t like this. You don’t ever have to let people touch you if you don’t want them to.” I wasn’t sure she’d follow that, but apparently she did.
Tentatively, she knocked her head back against me and the couch– not hard, but deliberately (head-banging is her way of expressing protest, and usually it’s pretty forceful). I took my hands off her shoulders. She banged her head once more, then stopped. After a moment, she slowly leaned back against me again, relaxed again. I fist-bumped her to let her know everything was cool between us, and gave her a quick hug. I was so proud. In that moment, I envisioned a future Tangles, one who would advocate for herself, stand up for her rights, and communicate her needs to others.
The other day Tangles went to the doctor, who suggested putting her on much higher doses of anti-anxiety medication to stop her from head-banging and slapping people (she smacks people to get their attention, not to cause harm, but ataxia means she has little control over a motion once she initiates it, so it often seems like she’s hitting aggressively). Fortunately, her mother was as horrified by the suggestion as I was.
The head-banging can be dangerous for Tangles, and the slapping can be harmful to those around her… but ultimately, these are still good developments, signs that Tangles is coming out of her shell and letting other people know her preferences. Her mother and I talked about the possibility of getting a therapist to help her learn less violent ways of expressing herself, but we both agree that the expression itself is a critical step forward.
She’s making progress, too, thanks to her current educational setting, where she gets a one-on-one aide all day. It took her mother a while to learn enough about her daughter’s needs to advocate for an appropriate IEP, but now that she has one, it is making a world of difference. I’ve only worked with her for this one summer, but in that time, I’ve seen her learn so much.
Tangles didn’t hurt me at all today, which may be a first. She’s getting very good at her “gentle touch” motion– stroking rather than slapping– and used it without prompting several times to get my attention (usually, she hits first, then is corrected to stroking my arm). She’s learning to touch people’s shoulders and arms specifically, rather than head, face, or chest. She’s learning not to grab strangers, especially smaller children. She’s already good with animals, but lately we’ve met some very shy dogs, and she’s learned (with reminders) to sit down and stay quiet until they come to her for petting.
She’s using words more, too, although I often can’t tell what they are. When I can, I always either give her what she wants or at least tell her “I know you want ___, but you can’t have it right now because ___.” She kept going to the fridge today and standing with the door open. I’d offer her a few different food items and get no response (usually, when she’s hungry, she accepts almost anything I offer). Then I’d close the fridge (I thought she might just want to stand in the cold air, but explained about it wasting electricity). Finally, she said “its-ah!” Pizza! I found the leftover slice and gave it to her.
The more I get to know Tangles, the more I realize how much of her apparently destructive behavior is purely a matter of poor motor control. She gets around so comfortably that I forget at times how little her hands do what she wants them to. I am now convinced that her tendency to rip up books is actually an attempt to turn the pages.
She’s intrigued by books. She doesn’t want to be read to– she sometimes whimpers when I try, or grabs the book away from me– but she wants to hold books and stare into them. She knows there’s something important about them, and she wants to know how it works. She also holds her mother’s laptop sometimes, surprisingly gently, almost reverentially, staring at it with the same intensity. I know she gets to use a computer in some capacity at school, and I think she knows that it’s a communication tool, an important one.
I have no idea how to teach her to read, and it’s not my job to try. But I encourage her to look on when I read with her younger sister, who’s in first grade, as we sound out each word with my finger under it. Outside, when Tangles sits on the ground, I draw letters for her in the dirt, tell her their sounds, and relate them to words I know she finds important– cat, dog, mom, pizza, her own name.
Sometimes she seems to be paying attention, sometimes not. I don’t push or insist– I just talk until I get bored or she moves off to do something else. Once I started singing the phonics song from the Apple Starfall educational program, and after a moment, I noticed she was humming along. They must use it at her school.
I learned about the phonics song from Rhythm, after a series of miscommunications that frustrated us both. See, his communication device has a button with an icon of an apple on it, that opens the menu for food items. He would press it, I’d ask what he wanted to eat. He’d press “computer” and I’d ask what he wanted to watch on his iPad, listing the favorite video categories I knew. He’d go back to pressing “apple,” but refuse suggestions of food. My confusion was encouraged by the fact that those two buttons are right next to each other, so when he’d switch from one to the other, I assumed he’d hit the other one by mistake and was correcting himself.
In retrospect, it makes perfect sense what he was trying to tell me and how. But until his mother explained that there was a series of videos called Apple Starfall, I had no clue, and we’d both just eventually give up. I was so relieved to finally understand, and apologized to him for having not gotten the request so many times before.
The more I work with children with limited communication skills, the more impressed I am with their patience, ingenuity, and perseverance in trying to tell us things. Their efforts get so little reinforcement– again and again they are ignored or misunderstood– and still they keep pushing for us to understand them. Anyone who’s going to work with children like this ought to be dropped for a few days into a country where no one speaks their language, with their dominant hand tied behind their back, just to have some idea what these kids are up against.
I tell the children I work with, over and over, that they WILL learn more language, that people WILL understand them better some day, somehow– don’t give up, keep trying, I want to you to tell me, show me, keep on making me listen to you until I get it right. You can do it, I know you can. I can learn from you, just give me the chance. Keep going, try again, and thank you, thank you, thank you for working at it so hard.