Research funded by Autism Speaks is helping children who have autism gain spoken language – with special training for parents
Posted by Stephanie Patterson Shire, an Autism Speaks Weatherstone Predoctoral Fellow who worked under the mentorship of educational psychologist Connie Kasari, at the University of California, Los Angeles.In last week’s “Your Dollars@Work” blog post, we described Dr. Kasari’s success using speech-generating devices to help minimally verbal children with autism acquire spoken language. Ms. Shire’s Weatherstone project built on this success with the development of a parent-directed intervention for further enhancing language in nonverbal children with autism.
“What do we do now? He is still not talking!”
It’s a question we often hear from parents of minimally verbal children approaching kindergarten. It’s an important one. Whether or not a child can communicate will largely determine what type of program – or even what kind of school – he or she will enter. This is especially true for minimally verbal children who have autism.
As an Autism Speaks Weatherstone Fellow, I had the great opportunity to help develop a new parent-led approach to enhancing spoken language among these wonderful children.
My project was an offshoot of a larger study testing the idea that speech-generating devices could be used to encourage spoken language as part of a play-based behavioral intervention. (To learn more about the results of that study, see last week’s “Your Dollars@Work post here.)
While iPads were already popular in the autism community, Dr. Kasari realized that children needed a structured intervention program that encouraged them to use the iPad to communicate.
My research project added an important aspect to the intervention. We wanted to test the effectiveness of involving parents as active partners in this unique intervention.
Many parents had told us how hard it was to engage their children in conversations and everyday activities that involve what we call “joint attention.” In these situations, the parents tended to quiz their kids to get some kind of spoken response. As in, "what color is this?” “Is this a ball?”
Sometimes this would prompt a one-word response from a child. But it seldom led to a true conversation, with the child asking questions or spontaneously making a comment.
One of our goals was to help children use language to share their ideas and to do so spontaneously. That’s a big step beyond responding to a prompt from an adult.
To accomplish this, we knew it was important to give children the space and time to produce their own words. Then parents need to respond to and expand on their children’s comments.
My Weatherstone project focused on how well parents could learn and use the strategies from the iPad-assisted intervention that Dr. Kasari’s team originally designed for use by professional therapists.
We started by having parents observe the strategies being used by a therapist. Then we coached them through using the techniques with their children.
We found that, on average, parents were able to accurately employ about 70 percent of the strategies. That was encouraging. Even more encouraging, when parents used the strategies, it increased the amount of time that the parents kep their children engaged in playful social interaction.
By way of example, let me tell you about Lance, now 5, who participated in our study. That’s Lance and his mother in the video screenshot above from our research clinic. And that’s Lance and his family at right.
When Lance was a toddler, his parents noticed he wasn’t talking and brought him for evaluation. Following a diagnosis of autism, Lance received specialized preschool services and home-based Applied Behavior Analysis therapy. But when we met Lance, just before his fifth birthday, he was using only a handful of words to share his thoughts.
Yet Lance’s mom Nikki felt that Lance very much wanted to share his thoughts and ideas with his family. He just didn’t know how.
“I could see that he would get excited, but he was excited by himself,” she said. “And I wanted him to be able to share that excitement.”
As part of our study, Nikki participated in her son’s sessions one a week. She learned intervention strategies to use with Lance.
For example, we coached Nikki and our other parents to focus on keeping their child’s attention engaged through play activities. More specifically, we encouraged them to use a toy or game as a “topic” for conversation.
As part of this process, we coached parents on how to identify a level of play that matched their child’s developmental level. This might involve building with blocks or pretending to bake a cake, etc.
We also showed Nikki and the other parents how to model and expand both the play activity and the language used around it. Using toys, parents learned to create repeatable sequences or routines. For example, one sequence could use a toy truck, animals, blocks and a barn. Parent and child can put the animals in the truck, make a road of blocks for the truck, drive the truck to the barn and put then put the animals in the barn.
We also encouraged parents to use the iPad to help their children hear and see the words used during their play activities. Nikki describes these sessions as challenging but rewarding …
“In the beginning it was hard for me because for the past two or three years, I was always initiating,” she explains. “To take that step back, I had to break my habits. It was like a new way of learning to play with him. But gradually, it grew easier, and now I can see he can initiate, and it’s great.”
We assessed Lance’s skills six weeks into the study. He had made rapid progress. He was using spoken words more frequently as well as using the iPad to share his ideas.
Reflecting back on their time in the study, Nikki describes Lance’s progress in communication and social engagement as a “spark going off.”
“Now he can communicate, and that was my biggest concern,” she says. “I could see that he wanted to share but he didn’t have the words. Then he got the iPad, and he was a pro!”
Nikki recalls one particular instance when Lance saw a toy that excited him and began pointing to the iPad screen in a way that made clear that he wanted another screen icon to better express his interest. Lance’s new interest in communicating his thoughts has been his family’s greatest reward of all.
“I’m just so grateful that he’s a part of the study,” Nikki says.
We will be using the success that these parents enjoyed to help design a new round of research. Stay tuned for the published results!
Meanwhile, you can learn more about our team’s strategies for using iPads and other assistive-communication devices to help children with autism learn spoken language here.
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