Canadian students learn to navigate high school with Asperger's

From The Globe & Mail in Toronto:

Antonio Curkeet-Green understood only too well how the other kids saw him in his early years in high school. He was the “retard,” the guy with the fanny pack stuffed with medication and the scruffy, unwashed hair, who talked way too much about The Lord of the Rings and couldn’t take a hint. Most students avoided him; the mean ones bullied him. He dreaded those hallway trips between classes. At lunch, he mostly hid.

But he knew he would have to face the cafeteria crowd eventually. “It’s like two molecules colliding with each other,” he reasoned. “They are just going to hit in the same path.”

It’s been 16 years since Asperger’s became an official diagnosis among autism spectrum disorders, and Mr. Curkeet-Green is part of a new cohort of teenagers and young adults who now find themselves navigating the always complicated social environment and pecking order of high school and university, facing such challenges as dating and finding summer jobs.

According to a new study being released Monday, Ontario has at least 5,800 students with autism spectrum disorders in high school, and about 1,100 of them can be expected to move on to university – a conservative count, the report suggests, and one expected to increase steadily in the future. And while services for them in high school are limited, they are even more so at universities.

The characteristics of Asperger’s syndrome differ widely between individuals, but typically they include a lack of social intuition, fixation on subjects and rules, and repetitive behaviour. People with Asperger’s often have trouble making eye contact and reading facial expressions, and they may have difficulty dealing with lights and noise (in Mr. Curkeet-Green’s case, pop music left him curled up in a ball on the floor). That makes high school – with all its social nuances – an especially difficult transition.

“When you are a little kid, your parents just love you to pieces, so you’ve got them,” says Susan Alcorn MacKay, director of disability services at the Glenn Crombie Centre of Cambrian College in Sudbury and co-author of the new study conducted for the Higher Education Quality Council of Ontario. “But then the [friends] become more important, and every year that goes by without friendship or with rejection and misunderstanding deepens the anxiety.”

Besides being at a higher risk of depression and anxiety, young people with Asperger’s can find their behaviour misinterpreted as harassing or dangerous. They may also be extremely creative thinkers in their area of interest, Ms. Alcorn MacKay points out. “It’s a big loss to society if we don’t give them the resources they need” – such as quiet rooms on campus and a more intensive introduction to university life at the beginning of the year.

“One of the huge misconceptions is that they are normal people who are weird,” says Lynn Koegel, a University of California psychologist who researches autism and co-author of the recent book Growing Up on the Spectrum.

Dr. Koegel runs a centre at the university that provides therapy and counselling to people with autism spectrum disorders, including many teenagers and young adults. Misunderstandings happen easily: She recalls one student with Asperger’s who took a date to a party, got bored and simply went home, leaving the young woman to find her own way back. Last week, she was called in after a fight broke out on a dorm floor between a student with Asperger’s, who felt a roommate was turning up the music on purpose to annoy him, and his roommate, who thought the student didn’t like him because he wouldn’t look him in the eye. “Basically, they didn’t understand each other.”

Schools, she says, have to take social isolation seriously since it affects mental health and even job prospects in adulthood. “A lot of time people think, ‘Well, if they are happy and by themselves, what’s the big deal?’ But it is a big deal.” She recommends that parents become advocates for their children at school, and encourage their teens to join clubs that fit their interests. In high school, she says, teachers need to help students find a social group, which may mean enlisting the help of receptive peers. And a big part of her advice is an old standard: practise. As part of her clinic, participants often go on test-run dates with volunteers, which involves asking someone out, organizing the activity and handling the goodbye at the door.

For parents, it is terribly hard to watch their child struggling on the fringes trying to figure out a way in. “You hurt for your kids,” says Abigail Curkeet, a public servant, “because you see what they are going through.” She demanded support for Mr. Curkeet-Green at school, including an educational assistant, and drained her pension to cover additional therapy. But Ms. Curkeet worries about parents who aren’t as skilled at arguing for their kids.

Last year, when Mr. Curkeet-Green won a math award at school, she was warmed by how much applause he received from his peers. To earn that applause, says Mr. Curkeet-Green, now an 18-year-old Grade 12 student, he did as Dr. Koegel suggested: He practised. “I learned by studying, like a naturalist,” he says. “Observing people and how they behave and copying what they do, and see if that works.”

He told other students he had Asperger’s, explaining why he might say something that offended them without meaning to do so. He made friends by tutoring classmates. He asked his friendly peers to make facial expressions and gestures so he could practise guessing what they meant, and developed a codeword with his closest confidants to alert him if he started a monologue about a subject in a group setting.

“The main people who helped me improve were my friends,” he says. “It’s not what you know, it’s who you know.”

High school life has its low spots, he admits – his few attempts at asking girls out haven’t been successful. (He’s going to the prom with his best girlfriend.) But the bullying has stopped, in part, he says, because he stood up for himself physically. He has held a dinner party for friends, and started wearing a suit on Mondays, just to be different. Facebook has opened social doors, he says. And he plans, after another year of Grade 12, to study biology at Carleton University.

At the same time, he is frustrated that – echoing so many “neurotypical” high school students – he still has to fit into someone else’s box. “It’s the lack of understanding of Asperger’s that irks me,” he says. “High school students either label you as retarded or a genius if you’re different.”