This ‘social ABCs’ program aims to give autistic children their voice
Alex Munro and his mom Jenn Potenza swoosh down a slide side-by-side, the six-year-old grinning at her with delight and chattering non-stop as the pair dash from one part of the brightly coloured playground to the next.
This parent-child interaction may not seem like anything out of the ordinary – but for Potenza, every smile and every word from her son is a treasured gift.
Alex has autism spectrum disorder (ASD) and at age three, he didn’t speak and rarely made direct eye contact with his parents, common symptoms of the neurological condition that affects an estimated one in every 68 children.
“They told me in the beginning that he may never learn to talk, he may never be able to go to a regular classroom,” Potenza recalls doctors saying after Alex was diagnosed with a relatively severe form of ASD at age two.
But thanks to an innovative program being studied at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Alex has found his voice.
Known as the Social ABCs, the program teaches parents strategies to help toddlers with ASD to talk or vocalize in more meaningful ways and to smile more with their caregivers.
The 12-week intervention, developed by clinical researchers at Holland Bloorview and IWK Health Centre in Halifax, uses objects that grab a child’s attention and motivates them to verbally interact with their parents.
“I remember specifically Alex was motivated by food and snacks like ice cream and cookies,” says Kate Bernardi, a research co-ordinator at Holland Bloorview’s autism research centre and a parent coach for the Social ABCs program.
“And so we just started with that at first and we would give Jenn the cookies and let Alex see them and wait for a signal from him that he wanted one,” she says.
“And then I would coach Jenn to hold onto those cookies while she was showing them to Alex and model the word ‘cookie’ for him to say, so that he would know what he was supposed to do to get one of those cookies from Mom.
“It was mostly getting something he really, really wanted,” Potenza adds, “like a Popsicle or juice or a cookie, and showing him what the expectation was and then just waiting until we got either that eye contact or he had said the words that we were looking for before he got the reward.”
It took a little time, with Alex initially making little “cuh” sounds for cookie, but eventually as Potenza practised with her son, he graduated to full words and then to whole sentences.
“There was a lot of crying involved, but once he understood ‘OK, I get rewarded after,’ it almost forced him to just say the words to get what he wanted,” says the Toronto mom. “There were little words coming maybe within a week and a half – very small words – but it started happening with consistency.”
Potenza will never forget the moment Alex finally spoke.
“Hearing his voice for the first time was absolutely phenomenal…. You have this little person you love so much and you don’t get the opportunity to really know what they’re thinking or they can’t tell you anything or express their needs or their wants,” she says, her eyes tearing up at the memory.
“When they have no language and you hear it for the first time – whether it be for a cookie or a glass of juice – it doesn’t matter what it is. Just to hear them talk to you about something is probably the best feeling in the world.”
Once completely non-verbal, Alex now can’t seem to get the words out fast enough as he discloses how he loves frolicking with his dog Lucky – “He was born on St. Patrick’s Day” – and playing the online game “Minecraft.”
“So on ‘Minecraft,’ you build a city and then you can live in any building. I can build roads,” he says with a gap-toothed grin, the result of recently losing his front baby teeth.
Potenza and Alex, who enters Grade 2 in September, were part of a recently published study at Holland Bloorview and the IWK Health Centre that enrolled 62 children with ASD, aged 12 to 30 months, and their primary caregivers. Half the families were randomly assigned to immediately receive the Social ABCs, while the other half waited six months to begin the program.
“What we found was that for the babies and families who received the Social ABCs initially, if you followed the development over that first six-month period, we saw significant gains in the amount of time the babies spent looking at their primary caregiver … and an increased amount of time that the parents and babies were smiling together,” explains psychologist Dr. Jessica Brian, co-lead of Holland Bloorview’s autism research centre.
Researchers also saw increased verbal responses to parental prompts and gains in their functional language, as well as how often they initiated a verbal connection on their own, says Brian, who co-developed the program with Dr. Susan Bryson, an autism researcher at Dalhousie University in Halifax.
“So the babies were approaching their parents more and initiating social contact. We’re very excited about the finding of initiating because it’s not something we taught specifically and it’s something we know is often very impaired in children with autism spectrum disorder.”
However, babies and toddlers in the delayed-program group made minimal progress, she says.
The researchers will soon begin a followup study – taking place in Toronto, Halifax and Edmonton – that will give caregivers training in how to better attract the attention of babies and toddlers with ASD or suspected ASD before starting the standard components of the program.
“We’re hoping that boosting that ahead of time will give the children an even bigger response to the Social ABCs,” says Brian.
For Potenza, who also has a nine-year-old daughter, the program was a lifeline that means her youngest child’s future will be much brighter than originally predicted.
“I will never forget the day he first said, ‘Mom, I love you.’
“I just started crying. I said, ‘I love you too,’ and it honestly was one of the best moments of my entire life.”