In the early phase of the COVID-19 pandemic, Stanford Medicine researchers had to pause a study of autism treatment in preschoolers. The participants, young children with speech delays, had been coming to Stanford 12 hours a week for a therapy called pivotal response treatment, which uses autistic children’s interests to motivate them to talk.
The halt was stressful for kids and their families, said pediatric psychologist Grace Gengoux, PhD, the program’s clinical director. So instead of stopping the program altogether, Gengoux and her team tried offering the treatment online. To their surprise, it worked — well. There were even advantages to the telehealth approach that delivering the same treatment in person didn’t offer.
“We were shocked at how effective it was,” Gengoux said. The team recently published a paper about their experiences in the journal Social Sciences.
In traditional PRT, which has a solid scientific evidence base, the therapist uses real-world objects and settings to help children start talking. Kids with autism tend to have restricted interests, focusing in depth on something very specific. So, for instance, if a child who loves dinosaurs tries to ask for the dino toy in his therapist’s office, he is immediately rewarded with a few minutes to play with it.
“We want to teach kids that when they verbally engage with other people, things get better, more fun,” said behavior analyst Devon White, who supervised the study treatments.
After COVID-19 lockdowns began, the researchers’ “aha!” moment came when they realized that virtual settings could multiply kids’ choices during PRT. Instead of giving a dino-loving child access to one or two dinosaur toys, a therapist could create a whole gaggle of onscreen dinosaurs. With online images, therapists had many more options for what the child could ask for: big dinos, baby dinos, dinos going places in the jungle. The therapist could reward each attempt the child made to talk by changing the onscreen world.
Treatment at the “airport”
The online pilot program included 17 children, five of whom were participating in the study when the pandemic shutdown started, and an additional 12 who later joined the online sessions. The children were 2 to 5 years old, and participated for several hours per week for varied periods, from 10 weeks to a little over a year.
Parents attended the kids’ treatment sessions to provide technical assistance, but therapists took the lead in each session. Like most young kids, many of the participants were interested in iPads and similar gadgets, which Gengoux said gave the team an advantage in engaging children’s attention.
Therapists could enhance the online setting using virtual backgrounds, screen sharing and tricks such as changing the cursor to the shape of the child’s favorite object or animal. Therapists had full control over what happened onscreen; the only way the children could influence what they saw was by talking to the therapist, who made changes to the virtual scene in response to what the child said. The online environment also allowed therapists to better cater to children with very specific or complicated interests.
“One child was really interested in the airport, and the therapist was working with him on sequencing, telling a story,” White said. “She got a bunch of virtual backgrounds — the ticket counter, bag check, security — and put herself there.”
If the child said, “Now it’s time to stand in the security line,” the therapist would switch her background to match his narrative. If he then asked her to go to the gate, she’d do that, too.
“It was so motivating for him; it looked real,” White said. “He was able to learn to tell stories, and that would have been difficult to facilitate in a clinic setting.”
“The number of toys you would have to have in a clinic to deliver this kind of variety or cater to this special interest” is not realistic, Gengoux said. “Having a practically infinite library of online images is valuable.”
In some ways, the online environment gave therapists more control than an in-person session, too. Instead of asking a child to return a favorite toy at each step of the therapy, then earn new opportunities to play with it, the therapist could set up potential changes in the virtual world in a way that enticed kids into talking more, prompting new or different events onscreen.
Parents of children receiving the treatment typically get some training of their own, too, to teach them with how to use the approach with their kids outside of the sessions. And because they were around for all virtual sessions, the parents quickly caught on to how the therapy worked, Gengoux said. Families felt encouraged to see that their children could do the treatment at home, not just in a clinical setting, Gengoux said. “It’s immediately relevant to real life.”
Building more evidence
Since pandemic restrictions have lifted, children at Stanford Medicine Children’s Health have returned to in-person treatment. But Gengoux and White hope to conduct more research on the benefits of online pivotal response treatment, which they think could complement in-person sessions and make therapy more accessible to families who live in remote locations.
Next, researchers plan to test the benefits of an online approach in larger groups of children using controlled studies, Gengoux said. “A few insurance companies are allowing telehealth delivery of these types of autism treatments, but many require in-person treatment,” she said. She hopes more evidence for the benefit of online services will prompt them to expand reimbursement options.
For the families who participated in the pilot program, the help they received during the difficult early days of COVID-19 was invaluable. “Families were extremely grateful we could do anything to help their children, and excited and surprised at how much their kids could learn online,” Gengoux said.
