Autism: Practical therapies turn play time into learning opportunities BY PAULINE TAM, OTTAWA CITIZEN FEBRUARY 15, 2013 Brothers Matthew (foreground) and Michael (rear) Stellato have autism. They are photographed in a therapy room at Toronto s Holland Bloorview Kids Rehabilitation Hospital. Photograph by: Cole Garside, Ottawa Citizen TORONTO Four-year-old Michael Stellato and his mother, Maria, are sitting on the floor, flipping through a book. What s that? Michael asks, pointing to a picture. That s a whale, his mother replies. And what s that? That s a shark. To anyone observing them, the rapport between mother and son seems easy and natural, with Michael acting like any other curious preschooler his age. Page 1 of 5
But his parents say Michael wasn t always this way. As a toddler, he seemed to look straight through people and didn t answer to his name. He couldn t sit still, barely made sounds and rarely pointed to things that interested him, making it difficult for his parents to decipher what he wanted. The Stellatos believe their son s inability to communicate triggered his frequent tantrums. Michael would bang his head crying for 45 minutes at a time, says Maria. Video taken of Michael at 18 months, shortly after he was diagnosed with autism, showed a feral little boy who seemed disconnected from the world around him, says his father, Paul Stellato. It was basically of him running circles around me, not paying attention to anything, not being engaged, not doing anything. Since then, his parents say, Michael and his five-year-old brother, Matthew, who has autism as well as a rare condition called Williams syndrome, have shown remarkable improvement with a therapy that never lets the brothers withdraw for too long into their own worlds, which people on the spectrum tend to do. The Stellatos have been trained to interact one-on-one with their sons, coaxing them to play games that hold their attention. They have learned to follow their children s lead, playing with their toys whenever the boys play with them. The couple even bring toys up to their own faces to encourage their sons to make eye contact. In the course of story time and other daily routines, they have learned to prompt their children to make sounds, form words, build sentences and ask questions. It s something that you can build into your lifestyle, Paul Stellato says. It s not something that feels scripted or difficult. Our kids use it on us now. They will hold up something and want us to label it for them, which is a form of the therapy that we would use with them. The therapies go by different names Pivotal Response Treatment, Early Start Denver Model, Floortime, Rapid Prompting, Applied Behavioural Analysis but they have all been formulated in recent years to give families practical ways to help their children become more high-functioning. The techniques share an approach that could be called in your child s face. Autism can be diagnosed reliably in children as young as two. However, with long waiting lists, the average age (http://www.ncbi.nlm.nih.gov/pubmed/19722339) of diagnosis in Canada is closer to four years. By that time, many children have already developed so many social deficiencies that, left to their own devices, they can spend days repeating scripts and soliloquies looping inside their heads. They interact Page 2 of 5
with people only if they are a means to a personal goal, like getting juice from the fridge or a toy on a shelf. Studies (http://link.springer.com/content/pdf/10.1007%2fbf02172020) have suggested that the earlier children with autism start therapy, the better chance they have of approaching a close-to-normal developmental curve. The theory is based on well-established research that shows the brain is at its most malleable in infancy, when a massive amount of learning takes place. Researchers say with the right interventions, even an autistic brain has the potential to reorganize itself so that when one part fails, another can substitute and, perhaps, excel in surprising ways. And as researchers learn to diagnose autism in progressively younger children, they are adapting commonly used therapies to suit babies as young as 12 months. We re trying to get children with autism back on course before they ve moved too far off of it, says Sally Rogers, a developmental psychologist at the University of California Davis MIND Institute, who pioneered a program for toddlers called the Early Start Denver Model. In a randomized trial (http://www.ncbi.nlm.nih.gov/pubmed/19948568), the program has been shown to significantly improve I.Q., language and social skills in toddlers with autism. With the waiting lists for government-subsidized autism services growing perpetually longer, many families are not waiting until they have a diagnosis before they act. Rather than risk years of delay, which could cause their children to miss the potential benefits of early intervention, they are being proactive by learning therapies they can practise themselves in everyday life. Since parents know their children best and spend the most time with them, equipping families with the right tools gives their children a fighting chance at reversing autism s devastating course, researchers say. Proponents of early intervention say parent-coaching programs are needed because, as autism rates continue to soar, there are simply not enough therapists being trained to keep pace with the need. However, a handful of studies (http://pediatrics.aappublications.org/content/127/5/e1303.short) examining the effectiveness of parent coaching suggests it produces mixed results. The Stellatos are taking part in a research study to test the usefulness of an experimental therapy called the Social ABCs, aimed at toddlers between 12 and 30 months who are suspected of having autism, or have already received a diagnosis. The therapy is a modified form of a widely tested intervention called Pivotal Response Treatment, which turns play time into countless opportunities for focused language and social learning. Page 3 of 5
Researchers at Toronto s Holland Bloorview Kids Rehabilitation Hospital and the IWK Health Centre in Halifax are testing the effectiveness of coaching parents in the Social ABCs. The training, given to 60 families by a researcher and documented on video, takes place in the family home over a six-month period. The therapy is not based on breaking down words or tasks into drills, which is a common approach in some therapies. Rather, the Social ABCs program embeds teachable moments into games and pretend play, capitalizing on a child s sense of fun and enjoyment to help them learn, says Jessica Brian, the Holland Bloorview psychologist who s co-leading the study. There s some nice research out there in typically developing children that when you re feeling good and you have high motivation and positive emotions, then you are more available to learning. If the Social ABCs proves to be a useful therapy, it could be paired in the future with other interventions. For example, Brian s colleague, Dr. Evdokia Anagnostou, is currently testing the effects of oxytocin, a hormone known to boost trust and bonding, on people with autism. Down the road, if both therapies show promise, the researchers would like to combine the interventions and test their impact. Our premise is that if we capitalize on a child s motivation and we also coach parents to be watching their baby and be ready with a big smile, maybe we can optimize the happiness factor and positive emotions in both groups, making children even more motivated to communicate, says Brian. Observing, socializing and imitating are the cornerstones of language and brain development in all children. However, many parents give up trying to interact with their children on the spectrum when they don t appear to respond through smiles and coos. That creates a vicious circle in which the children s inability to draw people in, and be drawn to them, deprives them of learning opportunities, says Rogers, whose Early Start therapy is also based on play. The reality is that children on the spectrum do respond to playful interactions, just like typically developing children, says Rogers. They just need some extra help to learn the building blocks of meaningful communication, such as joint attention, body language and imitation. I think about it as turning up the volume of social interaction. We teach parents to give really clear clues and to look for these really subtle signs that the children are enjoying what s going on. We teach the parents how to maximize getting their message through to the child so that it s really clear what s coming in and it s gorgeous. Claudine Mason of Sacramento, Ca, has worked one-on-one with trained therapists from Rogers research program to practice the Early Start therapy. Mason says her two-year-old daughter, Page 4 of 5
Samantha, who was diagnosed with autism at 13 months, has since blossomed in her ability to have back-and-forth exchanges both verbally and socially during everyday activities, such as eating, bathing and getting dressed. When Samantha was born, she was flagged as being at high risk for autism because her older brother, Jack, now seven, also had the diagnosis. With early intervention, however, Samantha appears to be developing like any other toddler her age, says Mason. With both my kids, you can t really tell that they have an autism diagnosis anymore. Jack is more ADD now. He s super social, he s funny, very smart, but he hyper-focuses on things, or he can t focus and gets distracted easily. But as far as the classic autistic behaviours, those have disappeared. Copyright (c) The Ottawa Citizen Previous Next Brothers Matthew (foreground) and Michael (rear) Stellato have autism. They are photographed in a therapy room at Toronto s Holland Bloorview Kids Rehabilitation Hospital. Photograph by: Cole Garside, Ottawa Citizen Page 5 of 5