Article: Learning to Smile

Susan Bryson is so openly passionate about her work, it's surprising to find out that there was a time when she had not even heard the word autism.

It was 1972, and the then 24-year-old psychology student was searching for an independent reading course at the University of Guelph, in Ontario: "I was hungry for knowledge. I wanted something to read, to discover." She approached a professor by the name of Victor Lotter, who agreed to supervise her reading course if she did it on autism. While working part-time as a registered nurse with behavioral, psychiatric, and addiction patients, Bryson had developed a strong interest in disorders of the mind. Although autism was new to her, she was game.

If chance played a role in introducing Bryson to autism, it also cemented her decision to stay in the field. Shortly after beginning the course, Bryson befriended a single mother on a bus who had an autistic son. She later became the young boy's friend, taking him swimming, hiking, and to the park. She was thus able to learn firsthand about the behaviors of autistic children and what it's like to care for one.

Fast-forward to 1981, and Bryson has earned a PhD in clinical psychology from McGill University, in Montreal, Quebec. Today, she is one of the foremost North American experts in the field of autism.

Parents Know Best

Bryson is the founding director of the Autism Research Unit at The Hospital for Sick Children in Toronto, Ontario, where she has been since 1996. Between 1990 and 2001, she was also on the faculty of Toronto's York University. In 2001, she was appointed the first Chair in Canada in Autism Research, at Dalhousie University and the Izaak Walton Killam Health Centre, in Halifax, Nova Scotia. (The Chair was endowed by Joan and Jack Craig, who have an adult son with autism.)

As we sit chatting following her photo shoot for this article, I ask Bryson about her goals at this stage in her career. Her reply is immediate and firm: "Early identification and treatment for children with autism." Although some autistic children are diagnosed between the ages of two and three years most are not diagnosed until age four – despite the fact that, on average, parents will take their children to at least three different professionals before a diagnosis of autism is made.

Bryson cites two main reasons for the delayed diagnosis. First, healthcare professionals frequently do not know the significance of the early developmental signs and behaviors of autism (they tell parents that their child will "grow out of it"). Second, many healthcare professionals do not listen to parents' concerns, although parents usually sense when something is not quite right with their child.

"We need to listen to parents who are concerned about their babies' development." Bryson leans forward and insists: "The best method of screening is to listen to the parents."

An Early Start

With this in mind, Bryson is working on the development of a set of markers of autistic behavior in very young children – even in infants. Although her research is still in progress, Bryson believes there may be five to seven "flags" for identifying autism in children including:

Once the markers are established, Bryson's aim is to train healthcare professionals to identify autistic children. She repeatedly emphasizes that the earlier autism can be identified, the earlier treatment can begin, so social and communicative behaviors can be fostered or developed and autistic behaviors can be reversed or modified.

When asked to describe an early intervention method, Bryson uses the example of an infant who is having trouble making eye contact. The parent can tickle the child, she explains, at which point the baby will look up and make eye contact. Eventually, a parent will be able to "fade out" the tickling to the point where a light touch will be enough to prompt the child to look at a parent. "We (want to) start working with the parents at once. We have to teach parents how to interact with their babies, how to pull them into the world of people and objects," she explains.

According to Bryson, research shows that behavioral therapy has a dramatic impact on as many as 50% of the children treated. Whereas years ago these children, untreated, would have been institutionalized, Bryson says, "We can now send these kids to a regular school."

But right now, many families do not have access to this type of treatment. How can this be remedied? Bryson, a practical thinker, believes that systematic community screening programs are the answer. Ideally, she says, professionals would work in teams that included psychologists, doctors, speech language pathologists, occupational therapists, nurses, social workers, and early interventionists. They would screen and treat autistic children through community-based programs, and – equally important – would teach parents how to work with their children at home on a day-to-day basis. An important part of these programs would be the provision of care, support, and education throughout the child's lifetime. Bryson recently received a grant from the Nova Scotia Health Research Foundation to evaluate the feasibility of implementing early community-based screening programs.

Beneath the Surface

Bryson believes that healthcare is a profession in which people should be emotionally involved. Her commitment to her work explains much of her success. On the one hand, she has a practical, hands-on approach. On the other hand, her choice of words and her expressions show that she is deeply invested in the issue of autism and has a great deal of compassion for the parents of autistic children. "For years, these parents have been abused and treated as if they were to blame." She elaborates with an example: "It's a hidden disability. These kids are beautiful. They look normal. But the family walks into a grocery story and the child goes berserk – throws a tantrum. People look at the parents: 'Can't you control your child?' But the child has heard a fan in the back of the store, and with his sensory sensitivities, he can't handle it and screams."

What about the perception that autistic people lack feelings? "We know that autistic people have a hard time reading emotion in others, and they may lack typical emotional indictors such as voice intonation and facial expressions," Bryson says. "But we don't know much about their experience of emotion." She believes, however, that autistic people do experience emotion, and are, in fact, overwhelmed by it, specifically by the softer emotions, such as sadness. She tells the story of one young woman who told her, "I won't let myself cry, it hurts too much. I get in the shower and let it cry for me."

Making it Happen

To promote early identification and treatment, Bryson is conducting research: talking about it; writing about it. Beth McConnell, one of her PhD students, considers Bryson to be an inspiring teacher and mentor: "She is one of those professors who regards students as colleagues – she treats us as equals, gives credit to our ideas, and doesn't want us to be afraid to ask questions. With Susan, I always feel comfortable putting my ideas out there."

Bryson shows no signs of slowing down. "Everyone gets so ticked off at me," she says, pointing at the clock. She's 45 minutes late for a meeting. "But I get so excited about what I'm doing."

"I feel so lucky!" she says enthusiastically. "How come I ended up doing something that I love and care about? I love research. I love learning. I love teaching. I love having a problem and being able to solve it. I care about people. And I care about these kids – and their families."