Child peers, digital technology unite to help children with autism learn to play and share

05/27/2014 6:17 PM

06/03/2014 10:17 AM

He probably did it on purpose — though it’s hard to know because most of Carson Stacy’s thoughts stay inside his head unshared.

But the autistic 4-year-old’s rapid fingers keyed his name wrong on his iPad. He inverted the “o” and the “n.”

He tapped and activated the tablet computer’s voice program.

Carsno,” it said, blindly robotic.

Five-year-old Creed Mattson — Carson’s “peer buddy” in a Kansas City area research project that puts children to work with emerging technology to help free the social inhibitions of nonverbal children — laughed.

“Carsno?!” Creed said.

Carson, looking up with his blaze of red hair and his frosty blue eyes, spied his friend’s reaction. A catch of a smile brightened his face, and he tapped at the screen, triggering more nonsense.

Carsno…Carsno…Carsno…”

The two boys’ heads practically knocked at times as they bent over the iPad, taking turns tapping and swiping its communication program into action.

Just months ago, when this project by the University of Kansas’ Life Span Institute was just getting started, Carson had nothing to do with a peer like Creed.

Any attempt to share the iPad was met by Carson’s back, turned against the other child, and a moan.

Children who struggle with verbalizing words often rebuff other children, said Kathy Bourque, an associate research professor guiding the project at five sites in the Kansas City area and Lawrence.

They stay in their personal shells and rely on the well-meaning adult who is always hovering nearby when they want something.

Nonverbal children have long had machines to help create words. But the advent of child-intuitive tablet computers is giving therapists opportunities to turn a child’s schoolmates into therapy partners.

Carson and Creed are both learning how to use the app on Carson’s computer. And Elisa Parker, Carson’s speech and language pathologist at Park Hill’s Gerner Family Early Education Center, is coaching little Creed to be Carson’s aide as they play together.

“It’s brought a whole new light to our program,” Parker said.

And that’s not all. Consider what it meant as Carson sat with Creed and triggered his iPad to recite some of the things about himself that he’d programmed into the app.

After the names of his two dogs, his 2-year-old little sister, his mother and father, the iPad said: “I am four years old.”

The phrase sounded with a cadence Carson enjoyed. First the machine repeated it, and then Carson. He can’t say many consonants yet. His vowel sounds wander. But there it came:

“I am four years old. I am four years old…”

These are the kinds of things that make his mother cry.

Carson was born with 22q deletion syndrome. Part of his 22nd chromosome was missing.

He came into the world with a cleft lip and just the earliest hints of the social, verbal and physical developmental delays that would follow.

It soon throws a parent into battle.

“You don’t know where to begin,” said Carson’s mother, Misty Stacy. “It is really, really hard. You have to be assertive and knowledgeable. The resources and information are overwhelming.”

She strained to open his world the best she could, she said, “never knowing if he would ever want to try to verbally communicate with me.”

Carson was the first child for Misty and Jeff Stacy, a civil engineer with Johnson County Wastewater. She recruits workers for information technology and engineering positions — a job she quit for two years to make helping Carson her all-day work.

The speaking iPad app worried her at first. What if he forever let it speak for him?

“I wanted him to talk,” she said.

The machines and their variants are known as augmentative alternative communication, or AACs.

Before the digital revolution went portable, the computers sat on a child’s desk, Bourque said. Adding words was cumbersome.

Computer tablets, which children can easily operate and which can go wherever the child goes, have revolutionized AACs.

Many more children are using them, and the available apps make it easy to immediately add words and pictures with almost no limit to how many can be installed.

Enough families are using them now, Bourque said, to also answer Misty Stacy’s concern: Children are more likely to try to mimic the sounds their computers speak.

They are prompting speech as well as providing openings to interact with other children.

Then came that 5 a.m. moment in mid-February.

Stacy rose bleary-eyed again to accompany Carson and his early-rising habits. She retreated to the couch, wanting only to sit and watch a cartoon with him.

But Carson wanted that iPad, out of reach at the moment on a shelf, and he stood pointing hard at it.

It’s not that Stacy didn’t appreciate the device. There’s no doubt its limitless ability to add words and pictures was a big help for Carson, whose word knowledge had far exceeded the capacity of his old binder of words.

She just wanted to sit and watch TV. She beckoned him to the couch.

Then the child spoke: “I want iPad.”

It would have been hard for anyone else to know what he said, but there was no doubt for Stacy.

They were his first words to her — ever — that were not prompted or mimicked.

Of course she got it down for him.

“He is realizing that words have power.”

Creed is getting his job down pretty well.

“Hold and wait,” Parker reminded Creed as he held up a choice of toys for Carson. “Hold and wait.”

Carson bent back to his iPad on the play table and quickly triggered it to say, “I want race car.”

Ideally, in time Parker wants to “fade out” and let the children interact without hovering so close by, she said.

Creed is one of a few peers Carson plays with in these regular sessions — so that Carson learns to play and share generally, not just with Creed.

Stacy can see the changes emerging in her child. No longer is he staying all to himself, approaching another child only to take something he sees and wants and setting off “a battle.”

His interactions are still minimal, she said, but he takes notice of other kids. He’ll smile. He’ll imitate them.

Now, as he and Creed played with a remote control car in Parker’s therapy room, Carson was prompting his tablet to say “My turn” and then “Your turn.”

At one point, Parker recognized a good play by Creed, and the teacher and the peer buddy exchanged a high five.

Carson watched and then began pressing his hands lightly together, as if to see how it might feel.

“Hey, Carson,” Creed said, raising his open hand again. “Give me five.”

Carson’s attention had returned to the iPad, and he kept his eyes down on it. But he raised his left hand, gave one peek to see their fingers were lined up, and gave Creed’s hand two pats.

To reach Joe Robertson, call 816-234-4789 or send email to jrobertson@kcstar.com.

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