Early intervention for toddlers showing signs of autism
In living rooms and basement playrooms across the GTA, toddlers and their parents are breaking new ground in autism research.
They are doing it while flipping through storybooks, singing songs or sprawling on the floor to play with blocks. They are doing it while navigating their way through snack time and temper tantrums.
The children, between ages 12 months and 30 months, show early signs of autism. Some have been recently diagnosed.
But instead of waiting until they know for sure, or until their child finally gets to the top of a wait list for treatment, these parents are following a different route. They are taking pre-emptive action by learning a therapy they can practise themselves in daily life.
The families are part of a research study called Social ABCs run by Holland Bloorview Kids Rehabilitation Hospital in Toronto and IWK Health Centre in Halifax. Thirty families in the GTA will participate, along with 30 more in Nova Scotia.
“It’s a pretty easy concept and it felt like common sense,” says Paul Stellato of Woodbridge, who learned the Social ABCs approach when his son Michael joined the program at the age of 18 months, shortly after being diagnosed.
“It gives you the tools and skills to make a difference in your child’s life.”
In each of the 60 families, a parent or primary caregiver is trained to use one-on-one techniques to boost the toddler’s language and social skills and, in turn, reduce disruptive behaviour. The training, delivered by a researcher and documented on videotape over a six-month period, is delivered in the family home.
“If you can intervene earlier, you can change the developmental trajectory of the child,” says Jessica Brian, psychologist at Holland Bloorview and co-principal investigator of the Social ABCs study, led by the IWK’s Susan Bryson.
“This allows us to target those children showing red flags without (waiting for) a firm diagnosis. Families need options.”
Experts have made strides in identifying signals of autism at increasingly young ages — as young as 12 months old, says Brian. And the rule of thumb is the earlier the better when it comes to treatment.
But diagnosis is often not reliable until age 2 or older. Wait lists for assessment and treatment are so long that too many young children aren’t receiving any intervention during the crucial early years when their brains are most responsive to learning.
Some parents seek interim help from speech and language services, occupational therapy or social skills groups, but unless they can afford to pay, they may have to wait for those too.
Families need innovative programs for toddlers so they aren’t “sitting on the sidelines” while they wait, says Lonnie Zwaigenbaum, a developmental pediatrician from Edmonton and head of the Canadian team in the Baby Siblings Research Consortium, an international group doing groundbreaking work on autism in the early years.
If Social ABCs proves effective, it could become a new proactive option during that vital period between the first signs of trouble and the day a child is diagnosed.
And because it is easily taught to parents or caregivers, Brian says it has potential as a low-cost preventive measure that could be rolled out for large numbers of families and early childhood educators. It also has potential to help children with a range of speech or developmental delays.
So far, 15 GTA families have completed the six-month program, which includes three months of active training and videotaping with a researcher followed by a three-month “implementation stage” when they continue to practise on their own.
The Star was permitted to observe videotape — on the condition that real names were not disclosed — to see the therapy, known as pivotal response treatment, in action. It’s an approach that follows the principles of applied behaviour analysis (ABA), the most well-known and tested treatment method, which relies on repetition and positive reinforcement.
The difference is that rather than focusing on specific skills, Social ABCs works on developing broader pivotal behaviours that can improve a child’s ability to interact. By harnessing the parent-child bond, it also taps into the strongest personal connection in a child’s life as a source of motivation.
A tape of 2-year-old Ava and her father during their third training session demonstrates how the therapy is also led by the child’s natural instincts and desires, rather than an adult’s agenda.
Ava, recently diagnosed with autism, moves in a swirl of energy around the family room. She darts from one toy to another, and spins constantly.
Suddenly, she wants the yellow ball, and she wants it now. She wants to grab it and drop it down the chute of the ball-popper game.
Her father spots his opportunity. He is on his knees, holding the ball next to his cheek, drawing his daughter’s eyes toward his face, waiting.
“Ball,” he says, prompting her.
He repeats it. Then again. And again.
Her arms jerk out. She stops moving and hesitates.
“Baw,” she echoes. His fingers loosen and she takes it, drops it clattering into the chute, and turns back for another one, as researcher Erin Dowds praises the interaction from behind the camera.
They repeat the process with a few more balls before Ava scurries off to another toy.
It’s a big moment for the little girl with soft brown curls, who can recite passages of Dora the Explorer script but hasn’t learned to speak with a purpose, known as “functional language,” and doesn’t make eye contact.
She has just used a word to communicate what she wants. She has responded to a cue from her father, and even looked at his face.
Her reward is the ball. Unlike traditional ABA reinforcements such as stickers or a Smartie, payback is always directly related to the activity. And a child gets reinforcement from each momentary connection with the parent, which is observed, recorded and referred to as “shared positive effect.”
“Research shows shared positive effect means feeling good, and when kids are feeling good they are able to learn better,” says Brian.
Paul Stellato says that theory proved true for his son Michael, who didn’t speak or make eye contact and was prone to screaming, thrashing and prolonged meltdowns when he began Social ABCs.
The family started to see a difference after about four sessions between Michael and his mother, Maria Stellato, and Paul also began adopting the techniques.
By the end, the little boy’s language, behaviour and interaction had improved so much that the couple sought similar pivotal response treatment for their other son Matthew, 5, who also has autism but was too old to enrol in Social ABCs.
The Social ABCs randomized control trial, funded by Autism Speaks Canada and the Sinneave Family Foundation, will compare the outcomes of two groups — 30 toddlers who receive the six-month intervention program immediately and 30 others who wait six months before getting it.
The initial pilot project in 2008 included 20 families in Toronto and Halifax. It found children in the program improved their use of language to respond to questions and make requests, and had more incidents of shared positive connections with parents.
A similar behavioural therapy for young children, called Early Start Denver Model, has been tested in the U.S. for children ages 12-48 months. It has shown promising results. A 2009 study in the journal Pediatrics found children who received it for 20 hours a week over two years had fewer autism symptoms, and better cognitive and language skills and behaviour than children who received other community-based interventions.
Recent follow-up research used electroencephalograms to observe the children’s brains and found “normalized” brain activity among those who had the therapy. That study, published in the Journal of the American Academy of Child and Adolescent Psychiatry, supports the notion that young brains are malleable and can be altered through effective early intervention.