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They aren’t anything like I was expecting.
Charlotte is sixteen-years-old. Her long curly hair is pulled back in a neat pony-tail and she’s wearing a white cardigan over a floral shirt. She’s a very polite girl, polished and somewhat stiff.
David is fourteen. He looks like any other teenage boy, wearing a t-shirt and jeans and a goofy smile. He moves awkwardly - he twists and twitches parts of his body.
Sergio is also fourteen. He sits stoically looking out from behind his glasses and from under his mop-like black hair, never raising his voice from its monotone.
They aren’t friends. Outside this room they don’t socialize or hang out on weekends. But inside this room they are three kids bound together by a single commonality few others have or understand.
I had never knowingly met someone with Asperger’s Syndrome before. My only prior knowledge of the condition was through two fictional characters - Gerry, a brilliant lawyer on Boston Legal who flapped his hands by his sides and made hooting noises when nervous, and Christopher, the teenage protagonist in The Curious Incident of the Dog in the Night-time who groans when he’s upset or scared and hates the colours yellow and brown.
We sit together in a meeting room at Monarch House Autism Centre in Burnaby. With us is Laurie Cocardon, a behavioural consultant at the Centre. She invited me here this evening - April is Autism Awareness Month and she wanted to show me what she does and introduce me to a few of the youth she works with. Tonight Monarch House is hosting a public panel discussion about autism - Charlotte, David and Sergio are the featured speakers, and Cocardon will moderate.
“What will you say if someone asks a question that makes you feel uncomfortable?” Cocardon asks.
“I’m sorry, but that question makes me feel uncomfortable and I choose not to answer it,” Charlotte replies.
The kids talk about possibly being nervous, but each claim they aren’t. Charlotte and Sergio credit their past stage experience, and David has been on a panel before. “It’s easy,” he says. “I have autism and I want to help people understand what that is.”
Cocardon asks the kids what autism, and specifically Asperger’s, means to each of them.
“We don’t know when we are doing something wrong to offend or make someone upset with us,” says Charlotte.
“I learn differently and say things and do things sometimes that are wrong and I don’t understand some people,” answers David.
“It’s social isolation,” says Sergio.
Sergio’s isolation has resulted in his classmates calling him “ninja”. He disappears for long periods and reappears when least expected.
“I’m doing this panel tonight because I want to make the others understand what’s going on inside my head,” he says.
The kids leave the room and I stay behind with Cocardon for a few minutes as she finishes preparing. I communicate my surprise about meeting three kids who seem as regular as any other. Cocardon explains that Asperger’s Syndrome is a high functioning disorder along the autism spectrum - it affects an individuals’ ability to learn and understand social cues and rules. People with Asperger’s can appear rude and emotionless, and are often prone to angry outbursts. Many adopt routines and resist change. Some have underdeveloped motor skills, causing twisting and twitching. Like so many along the autism spectrum, kids with Asperger’s are often bullied and isolated from their peers and retreat inwards.
Cocardon tells a story about the first time she met an autistic child. On one of her first days working at a preschool in her early 20s, she found a boy sitting under a table. When she asked her coworkers about the child she was promptly told that he was weird and that she should just leave him alone.
“So,” Cocardon says, “I got under the table with him.”
Cocardon has been working with Charlotte, David and Sergio for over a year. She treats them like she would anyone else, and they appreciate that. They trust her. For Cocardon, working with these kids is personal. “They are my kids. I miss them when I’m not here.”
Monarch House offers treatment in one-on-one settings and in groups, and Cocardon calls herself Monarch’s “Group Queen”. Group sessions involve discussion between Cocardon and the kids, and activities that involve structure, role-playing, and critical thinking. Cocardon complains that too often in autism treatment the focus is on molding the kids to acceptable behaviour – saying “please” and “thank you”, proper body posture and eye contact. While important, she says these kids need more.
“I want my kids to take care of themselves. I don’t want them to need help in everyday aspects of their lives. These are smart, capable kids who need a little guidance but don’t need people pandering to their disability. They need to push their boundaries just like anybody else, and they need to stand up for themselves when needed.”
We leave the meeting room and join the crowd in the conference room. It’s a full house – twenty or more people fill almost every seat. Charlotte, David, and Sergio sit at the front of the room on a stage behind a long table. Cocardon sits to their right. Now they look nervous.
Cocardon welcomes the audience and has the kids introduce themselves. They speak briefly about their families, where they go to school, and some of their personal strengths – Sergio works well with computers and specifically doing PowerPoint presentations (he showed me one earlier and the graphics and animation are better than anything I’ve seen in university), Charlotte likes to cook (she baked and brought a cake), and David is highly organized and knows every major national capital and religion in the world.
After introductions, Cocardon opens the discussion to the audience for questions. Some are expected (“How do you handle changes in your schedule?”) while others are not (“Have you ever had issues with your hearing?”). But a question about how the kids deal with their peers at school offers the evening’s first bit of poignancy.
“I have one friend at school,” says Charlotte. “She knows me and cares about me, but sometimes she’s too nice to me. When I make mistakes and don’t know when I’m doing something wrong, I need tough love. Her telling me things are okay when they aren’t doesn’t help me.”
Initially, David struggles with his answer, but finally says, “Now that I’m in high school I find it hard to relate with other people. I just need someone to talk to. That really makes my day.”
Sergio talks about bringing awareness to his condition. “When I was in elementary school, the others would treat me like trash. But as I got older I knew things would get better once they understood why I was different.”
As the evening progresses, the kids relax. They answer questions about bullying, autism awareness at school, and what they need from teachers (“No baby talk!”). All three admit to being on medication. They are open about their pasts and their feelings, and giving with their advice to the families in the audience. The differences between the kids are stark – the brooding Sergio, the outspoken Charlotte, and the affable David. I wasn’t sure what to expect when I arrived this evening, given their perceived ailments. What I got are three teenagers who look and sound like any other you would see at any mall on any weekend, anywhere.
The discussion lasts about 30 minutes. As the evening comes to a close one more question is posed from the audience.
“If the three of you tonight were to meet a young person who had just found out they too have autism, having had the experiences you have had now, and knowing what you do now, what would you want to tell them?”
After a moment, Charlotte says, “That autism is like a speed-bump or a mountain to climb, but that there is nothing wrong with you.”
I appreciate seeing this article. I have yet to see an article about autism month anywhere else so far (in Local news).
A large problem I have found, personally, is that there is very little support for adults that have or believe they may have a form of autism. Asperger’s specifically.
I called the autism society once to find a specialist in the field in search of what would seem a likely diagnosis (to better understand myself and find strategies for coping with day-to-day challenges). Alas they referred me to VGH…
apparently they handle children and referred me to UBC hospital…
UBC in turn referred me back to them and I brought this up…
Then I was handed the names of two private psychiatrists who charge for their services…
In the end I didn’t contact either one as they charged upwards of $200 to see them. What am I to do at this point? I’m not sure. I’m very certain that this describes me very well in how I think and behave and I have encountered many challenges described by those who have been diagnosed. The frustration is immense.
Perhaps some journalistic investigation into adult support / diagnosis, something beyond focusing on children is needed?
Afterall, our health system looks mainly at autism in children, but fails to keep in mind that these children grow-up and become adults who need help too.
I loved this article! Kudos to the kids that took the time to share their experiences and give insight into a sometimes misunderstood condition. Way to go Sergio, Charlotte and David!
Great article!
It’s wonderful that they author chose to portray these fine young people as individuals first and foremost. Their disabilities are part of who they are, how they learn and will be with them for all their entire lives - but this does not preclude them from living rich, engaged and productive existences.
I’m grateful that the world has people like Laurie Cocardon in it. Her caring, dedication and expertise is making a huge difference to people that would otherwise be passed over by a society that doesn’t always do such a great job a recognizing and accommodating the needs of persons with disabilities. Any effort that moves us toward a more inclusive and accepting social fabric gets my support and gratitude.
We may be halfway through, but I’m going to post about Autism Awareness Month and a link to this article on my office blog first thing Monday morning.