Facing down autism: The unconventional (and somewhat controversial) therapy that’s led to recovery 【USA】

Patrick and Ben Hindmarsh aren’t twins, but when you see them interact, it’s difficult to tell the lanky teenage brothers apart. You wouldn’t guess one was diagnosed with classic autism more than a decade ago.

Their mother, Dr. Wendy Edwards, a former chief resident at Toronto’s Hospital for Sick Children and now a pediatrician, remembers the moment she realized her youngest son Patrick was autistic: At three years old, he didn’t make eye contact and sometimes flapped his hands in the air, but when he rapidly echoed the language in a computer game (a repetitive autism behaviour called scripting), she knew.

“It was like I got punched in the gut. I’m lying on the couch and I realize, ‘This is autism, this is autism. We have to do something about it,’” says Edwards, who lives in Chatham, Ont., with husband Keith Hindmarsh and their sons.

“We couldn’t get his attention. He would run around and we would call his name and call his name – ‘Patrick, Patrick’ – and he just wouldn’t respond,” Hindmarsh recalls.

Now 14, with good grades and set to start high school, Patrick is practically unidentifiable as the withdrawn non-verbal toddler who ignored his brother, slipped out of his father’s hugs and never really looked at his mother’s face.

His parents credit the change to an autism treatment called the Son-Rise Program, which the family started soon after Patrick’s diagnosis.

The U.S. Centers for Disease Control pegs the number of children with autism at one in 68, and climbing. Although experts emphasize the importance of starting treatment as early as possible, waiting lists for the mainstream method of treatment – behavioural therapy – are as long as four years in some provinces. Go the private route, and families can face a cost of about $60,000 a year of treatment.

Some families are turning to alternative approaches and, in particular, to Son-Rise, a 30-year-old therapy devised by an American couple for their severely autistic son, which is carefully detailed in a new book by that now-adult son, Raun Kaufman. Believers – such as the Edwards-Hindmarsh family and Laurie Mawlam, executive director of the Autism Canada Foundation – have seen their uncommunicative and isolated children emerge as dynamic members of their family and community. Many go so far as to use the “R” word: recovery.

“I can actually talk to people now, I can actually interact with my parents and friends, whereas back then I was just sort of wandering,” Patrick says.

When he grows up, he wants to be a comedian, he says, because it feels good to make people laugh.

Unlike other treatment methods, the Son-Rise program doesn’t try to “correct” a particular behaviour; instead it lets the autistic child set the agenda and instructs parents to join the child in whatever activity has captured his attention – whether it’s a typical activity such as playing with trains or repetitive behaviours such as spinning an object. This interaction, in a dedicated playroom in the home, helps build strong relationships that teach the child how to socialize and communicate with others.

It differs from Intensive Behavioural Intervention (IBI), which teaches by rewarding appropriate behaviour with, for example, toys or treats. Son-Rise considers the relationship itself as the reward.

“We don’t ask the question, ‘How do we change this behaviour, or, how do we reduce this behaviour,’” says Kaufman, the author of Autism Breakthrough, which gives parents the basic tools to start a program at home. When he was a child, he was diagnosed with severe autism and an IQ below 30, but as patient zero for Son-Rise – developed by his parents Barry and Susan Kaufman – he made a full recovery.

Other better-known autism therapies, such as Floortime and Relationship Development Intervention, also prioritize building relationships, but Kaufman says Son-Rise differs because it looks for signs that the child is too overwhelmed to engage and, if he is, gives him a break.

Over all, says James Bebko, a professor at York University in Toronto who studies autism and developmental disabilities, “the implementation of some sort of treatment has been effective for every child.” The problem, he says, is that there’s no way to predict which treatment will work best for any individual child.

Bebko sees Son-Rise’s potential, but says that there isn’t enough evidence to prove that it has a lasting effect. Still, research supporting IBI is lacking. “It’s really not as well validated as something like a cancer drug would be,” notes Elizabeth Kelley, a professor at Queen’s University in Kingston, who studies optimal outcomes of autism.

Research supporting Applied Behavioural Analysis, from which IBI is derived, finds that children receiving that therapy see improvements relating to IQ and academic performance. But the research often doesn’t look at social interactions or communication skills. And that’s what parents want – they’re more interested in building a relationship with their child and seeing him have a full and happy life.

Patrick’s family tried IBI, but stopped after six months, concerned that it was hurting his ability to communicate.

Sitting in the family room with his family and guests watching videos taken by his parents, Patrick squirms on the couch as the tape rolls; like most teenagers, he seems embarrassed to see himself as a young child. In the video from the IBI period, toddler Patrick yawns and seems indifferent to his reward, a toy helicopter. In early footage from the Son-Rise playroom, he smiles and interacts with his mom, spinning in dizzy circles, jumping on a couch and collapsing into giggles on the floor.

Alhough some detractors liken Son-Rise to a cult, and suggest that Kaufman never had autism, the program continues to gain popularity.

Mawlam of the Autism Canada Foundation said she had a “wonderful” experience using Son-Rise with her son.

“While the scientific studies for Son-Rise are nowhere as plentiful as traditional discrete trial [Applied Behavioural Analysis], it doesn’t necessarily mean the treatment is not valid. It may just mean the studies have not been done,” she says.

Last year, researchers from Britain’s Lancaster University completed the first control trial for Son-Rise and found that a small group of children receiving the therapy showed more improvements in social communication than did a control group.

Behavioural therapists have borrowed from Son-Rise, and vice-versa.

“The most effective IBI programs that I’ve been involved with have gotten right down on the floor and played with the child. It’s the establishing of rapport and connection with the child at the beginning of therapy that was one of the strengths of [Son-Rise],” says York’s Bebko.

Although he is not convinced that Son-Rise works, he believes other therapies could learn from its emphasis on family involvement. That involvement, Patrick’s father says, “helped us to stop looking at autism as the enemy. It wasn’t bad that Patrick had autism, it just was.”

Patrick still frustrates easily, and is a bit socially immature, but his improvement has been steady, his mother says: “Every year he gets better and better and better.”

She recognizes that Son-Rise doesn’t have the same amount of research behind it as IBI, but says that doesn’t mean it isn’t effective.

“When it’s your child, and you see things happening and changing, that’s enough evidence,” she says. “I certainly support [parents] if they want to do IBI, because every family is different. If Son-Rise doesn’t sound right to you, then you go with what sounds right to you. But for us, this was the right way to do it.”

After those worrying early years, she now sees a bright future for Patrick.

“I totally expect that he’ll go to college or university,” Edwards says. “I expect him to get married and have children, I expect everything … I think it’s all going to happen.”

【News Source:2014.8.3 The Globe and Mail】