Ben is showing me the Godzilla stuff in his room—action figures, a big stuffed dinosaur on his bed, wall posters and the videos. Ben has just about every Godzilla video going. I pick up the original to see how old it is. "Guess what?" I say. "This movie was made the same year I was born." "Then two monsters were born that year," Ben says. Oops. Walked into that one. Later the 12-year-old admits this quip was not his own. A social worker (also born in my year) used it once to poke fun at himself. Still, the quick recall and adept use of the line are impressive—if a tad bold considering we've just met.
Ben seems excited and eager to talk, though anxious. He paces, waving his hands and keeping up a Robin Williams-like commentary. To almost everything I say, Ben has a comeback. His mother can be heard laughing in the living room as she picks up snatches of our conversation. "Who are your friends at school?" "I have lots of friends. My best friend is Adam, but this year we're at a new school with lots of classes in my grade and he's not in my class." Ben puts his hand up to his mouth as if to speak into a microphone: "If anyone at the board of education is listening to this interview, tell the fat guys who decided to put Adam in a different class that they shouldn't have done it."
A little later, he breaks off from another topic to say: "Here's another message for the guys at the board of education. Sorry I called you fat." "What do you like to do with your friends?" "I have friends over and do things and do things and do things. Did I already say that?" What's sad is that, according to his mom, Ben doesn't hang out with friends regularly like other 12-year-olds do.
The reason is largely because he has Asperger syndrome (AS), a psychological disorder that affects children's ability to relate socially. If you know anything about this disorder—it's part of the autism spectrum—you've probably heard about amazing smarts and abilities exhibited by children with Asperger's. You likely also know that these kids often have unusually specialized interests, or that they take things very literally and that they have poor social skills. But what does that look like in individual children, and how does it play out in a family?
To answer those questions, I spent time with Ben and five other kids with AS. I was searching for a glimpse of what the diagnostic criteria couldn't tell me. At first glance, Ben is clearly different, but he seems happy in his own skin, as they say. I offered his family the privacy of a pseudonym, but Ben himself insisted that I use his own name. He obviously wanted to connect with me—so did all the other kids. But with his peers, it's hard. His mom, LeeAnn Cormier of Cavan, Ont., told me that, although Ben enjoys some of the same activities as other kids his age (going to movies, swimming, playing video games), he spends much of his spare time alone, creating new video games or fantasy stories. One parent of a boy with AS stopped me when I made a passing reference to all the activities that tend to occupy most kids on weekends. "Not my kid," she said quietly.
Asperger Syndrome is named for Austrian paediatrician and autism pioneer Hans Asperger, who first identified the cluster of characteristics in the 1940s. He described children who displayed some traits now associated with autism, yet were very able intellectually and verbally. It wasn't until the mid-'90s, when AS was included in the American Psychiatric Association diagnostic manual (DSM-IV), that the term came into widespread use. AS is much more common in boys, although some observers suspect that it may be harder to detect in girls because their social skills tend to be more advanced.
Children with AS have trouble forming peer relationships. It's harder for them to read and present gestures, facial expressions, tone of voice and other cues we use to guide our social behaviour. Children with AS also have less ability to "read" what others are thinking or feeling. Often, they become isolated; they learn that withdrawal is easier than coping with the frustration and rejection of a social world they don't seem to fit with. Kids with AS tend to be obsessive about routines. Parents talk about having to prepare a child for a slight change in route (stopping off at the drugstore) on the way home from school. One boy I met once had a 20-minute meltdown when he noticed changes on a highway sign near his home.
Most kids with AS also have intense special interests. Ben is into Godzilla and Power Rangers. Another boy did virtually all of his family's laundry from the time he was three. When his mother told him she was going to have a baby, he was thrilled: more items for the white pile.
James* has a passion for trains. He is explaining why, in his view, a GO Train (the Toronto-area commuter system) is a triple-decker. "Isn't it double-decker?" I say. "Triple-decker," the seven-year-old begins. "There's the bottom. There's those nine windows, three on each side, in the middle. You know when you see a GO Train? When it pulls into the station? And, um, you'll see the bottom, and then on your way looking up to the top, if you look to the side, you'll see three windows. That's the middle." "So it's one set of windows for each level?" James clarifies. "Well, there's a few downstairs, and three in the middle, and, um, three on each side, um, so there's basically, nine windows, um…. It's hard to explain.… Dad, you explain it." He turns to his father for help. I understand. GO Trains have a set of windows located halfway up the stairs between the two passenger levels. From the outside, it does kind of look like three levels.
James's delivery is instructional and slightly formal—his efforts to provide detail are unusually painstaking. At times, he sounds almost old-fashioned, or perhaps like a four-year-old with an eight-year-old's grasp of grammar and vocabulary. It's as if there are subtleties about the rhythms and inflections of human speech he hasn't picked up. James's social differences are less immediately apparent than Ben's. Both boys make eye contact, but Ben's gaze quickly darts away. James is fairly direct, but still brief. He holds my eye for a second or two, and then shifts focus to just over my right shoulder, without turning his head. Just the eyes. Every so often, James swings his eyes as far as possible to one side, then he turns his head back in the opposite direction. That's a facial tic, his mom explains. (James may have Tourette syndrome too. He's never been diagnosed, but it's common in children with Asperger's.)
Unlike most children with autism, those with AS usually display normal or superior intelligence and don't have clinically significant speech delays. So their parents may go through a period of confusion due to the combination of typical, advanced and abnormal abilities. LeeAnn Cormier recalls how Ben seemed normal as a baby, except that his language skills were amazing. "He could carry on a conversation with sentences when he was just over a year old," she recalls. Then, around the age of 18 months, Ben stopped talking and started having frequent screaming outbursts, often with no apparent trigger.
In hindsight, Cormier thinks the episodes were his reaction to too much stimulation, but at the time they just seemed weird. Cormier recalls a day at the supermarket with Ben and his brother Alex, 13 months older, both in the shopping cart. "We got to the middle of the produce section and he began screaming like a child would having a temper tantrum—the kind that gets looks as if I had just pinched or hurt him. I tried consoling him by picking him up, doing the cooing, soothing kind of mom words, but nothing helped. Ben was inconsolable so by the time I was at the bread section, I decided I had to leave. Ben calmed as soon as he was in his car seat and the doors were closed."
James is lying on his stomach reading his Baseball Top Ten book, legs bent, feet in the air, chin resting on his hands. I try to get his attention. "What do you like to do with your friends?" James keeps reading. He doesn't look up, but he raises one finger in the air as if to signal "just a minute." The gesture seems a little imperious. Most kids would turn their head or say something in reply. James just keeps reading with his finger in the air. This turns out to be a coping technique his mother taught him. "James would have a lot of trouble when he was interrupted reading," says mother of two Naomi Spencer. "If he shifted his attention to the person, even if it was just for a second, he'd completely lose where he was in the book." These interruptions sometimes put James into a tailspin of frustration. The finger trick allowed him to signal his need to finish the page without losing his attention.
One of the hidden problems for kids with AS is that because they appear "normal" in many ways, people don't make allowances for them. It seems as if they should be able to behave, get their school work done and listen. "Society is at a very early stage in its understanding of Asperger syndrome," says Kevin Stoddart, a Toronto social worker who specializes in helping adults and children with AS. "So in some ways, people with AS are more disabled than those with autism because more is expected of them. If the kid gets 98 in math, his English teacher might be wondering, ‘Why can't he write a paragraph or behave himself in my class?'"
Parents of kids with AS must learn not only the best way to communicate with their child, but also how to communicate with others about the child. Parents also find ways to adjust the environment when they can, and teach their child to cope when it can't be changed. LeeAnn Cormier helped Ben deal with the sensory overload of grocery stores by reading storybooks about shopping, and by taking some of his favourite books in the shopping cart, which helped him "tune everything else out," she says. James's clothes are all second-hand because he can't handle the feeling of new fabric against his skin.
Living with AS is a multi-faceted, ongoing learning process for parent, child and, hopefully, everyone else. In many ways, parenting a child with AS is about helping him live in a world that is not well suited to his style of understanding, learning, relating and being. One thing all parents interviewed for this story desire passionately is for their children to be accepted as they are. As Cormier put it, "I want you to make it clear that our family accepts Ben for who he is, that he accepts himself, and that we totally let Ben be who he is, a person with AS."
Getting the rest of society to that point is seldom easy. That's why Naomi and Rick Spencer were so careful about James's entry to school. He started off in a Montessori program—which Naomi, a Montessori teacher herself, thinks is a good setting for children with AS. But they moved James to the local elementary school at grade two because they knew he would eventually have to go there. They wanted him to start young, when his differences were less apparent and when peers would be less judgmental. "I wanted people to love James before the social gap between him and other kids would widen."
*Names changed by request.
Asperger Syndrome: Resources for Families
Asperger’s Syndrome: A Guide for Parents and Professionals by Tony Attwood. Jessica Kingsley Publishers, 1997.
Children, Youth and Adults with Asperger Syndrome: Integrating Multiple Perspectives edited by Kevin Stoddart. Jessica Kingsley Publishers, 2005.
The OASIS Guide To Asperger Syndrome: Completely Revised And Updated: Advice, Support, Insight and Inspiration by Patricia Romanowski Bashe and Barbara L. Kirby. Crown Publishers, 2005.