Early treatment is key for autism
New program teaches parents strategies to help toddlers learn to respond and communicate
The breakthrough came quietly, during story time.
Ting Chan watched as the trainer for a new autism therapy read to her 3-yearold son during a home visit. Tristan, diagnosed with the neurodevelopmental disorder a year earlier, usually had a different agenda.
But that day on the couch, “he was listening, he was looking at the pictures and following as she read,” recalls the Toronto mother. “I realized this is what she means by getting him to attend to what’s going on. This is the difference.”
It’s the kind of moment taken for granted by most parents. But for Chan, it was a sign of hope after months of uncertainty awaiting an assessment and diagnosis for Tristan, only to be told that he didn’t qualify for intensive autism therapy funded by the province.
It happened thanks to a pediatrician’s referral that got mother and son into a clinical trial for a new intervention called Social ABCs at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
Social ABCs is one of four publicly funded initiatives the province is expected to announce this week to help babies and toddlers who show signs of autism. It’s also the only one developed in Canada.
“I feel very lucky,” Chan said recently as Tristan, now a 5-year-old kindergarten student at a local public school, leaped into the ball pit in the Holland Bloorview playroom.
In Ontario, there are few options for parents when they suspect autism in a young child, unless they can afford to pay thousands of dollars a year for private therapy.
Evidence is clear that the earlier the treatment, the better the results. Yet wait times for intensive behavioural intervention (IBI) covered by the province can be anywhere from one to four years long, depending on the region. Children also face wait lists for the limited speech and language or occupational therapies they are entitled to.
Social ABCs is among the emerging interventions to address symptoms sooner rather than later — in a child’s home while they wait, and delivered by their own parents or caregivers.
Common red flags for autism include inattention, lack of eye contact and not pointing or trying to speak. So over the course of the six-month program, certified trainers teach parents simple tools to make connections with their toddlers, encourage them to use words and build social skills. Helping children communicate also reduces frustration and in turn, disruptive behaviour.
The idea is to use the one-on-one techniques every day — while eating breakfast, playing with Duplo or at the park — and capitalize on whatever captures the child’s attention.
“A key part of Social ABCs is it builds on a child’s motivation because when they’re motivated, there’s more chance of success,” says psychologist Jessica O’Brien, an autism researcher at Holland Bloorview and co-developer of the program, with psychologist and researcher Susan Bryson of IWK Health Centre in Halifax.
You can see how it works as Chan and Tristan sit on the playroom carpet with a bin of plastic alphabet shapes between them. Tristan reaches for one, but before handing it over, his mom waits for him to focus his gaze and say aloud that he wants “the purple B.”
His reward is not only getting what he wants, but the shared connection with his mother in that moment. That prompts him to ask for one after another until he tells her he wants to look at books instead.
The pair was among 60 families in the Social ABCs trial for children ages 12 through 30 months. Half received the intervention as soon as they enrolled.
Their outcomes over the period will be compared with the outcomes of the other 30, who functioned as a control group for six months and then had the option to take the treatment. Tristan and Chan were part of the control group.
Results are expected to be published this year. An earlier pilot study published in December in the journal Autism Research reported language gains among the children and an increase in shared positive connections with their parents.
Social ABCs also has promise as a low-cost model that could be rolled out in child care centres and similar settings. In 2014-15, four ECEs at Humber College Child Care were trained by the researchers to test how effectively it could be delivered in a busy childcare setting. Those results are still being assessed.
Two years after finishing the program, Chan still uses the strategies and says Tristan is continuing to gain ground in his language, attention and social interactions. A big moment came last year when she asked him to turn off a light and he actually stopped and flipped the switch.
To what extent he might have developed skills on his own is hard to know. But she’s convinced her training made a difference.
“It was hard at first learning that I had to be quiet and wait,” she says. “My role became different. I had to look for opportunities and take his cues instead of always jumping in and leading.”