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courtesy Kat Fowler

One big mass of contradictions

Revealing the faces behind Asperger's syndrome

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Sheldon Cooper from The Big Bang Theory is a memorable character. He has many personality quirks, which make for many laughs. But have you ever noticed that Sheldon displays many characteristics of a person with Asperger's syndrome? The show's producers have never confirmed this diagnosis. Perceptions of Asperger's and its portrayal in the media can be stereotypical or extreme, and can greatly differ from actual individuals' experiences with Asperger's.

Asperger's syndrome is a neurodevelopmental disorder named after Austrian pediatrician Hans Asperger. Asperger studied and described children with these characteristics in 1944, though Asperger's syndrome was only listed in the Diagnostic and Statistical Manual of Mental Disorders 50 years later. Asperger's often goes unacknowledged even today, except in extreme stereotypical media portrayals. The fact is that those diagnosed with Asperger's exhibit a range of characteristics, and have some in common that are used to diagnose the condition. Researchers aren't sure what causes Asperger's, but between 10 to 20 per cent of cases stem from genetic factors related to Autism Spectrum Disorder, and there is no Asperger-specific medication.

"We talk about a triad of core symptoms in Autism Spectrum Disorders," said Katia Jitlina, University of Calgary faculty of education master's student and researcher for the Autism Spectrum Education Research and Training team. The triad consists of communication issues, social issues and repetitive behaviours. Children with Asperger's start developing language at the same time as children without. Their language development is average and they will have average or above average intelligence, differentiating them from those with autism. People with Asperger's can have restricted and intense interests, they can be very blunt and literal, and they can have difficulty understanding another person's perspective.

Ryan Matchullis, another U of C faculty of education master's student and ASERT researcher, says that people with Asperger's have a difficult time following non-verbal communication: "Body language, certain facial expressions, gestures, sarcasm, tone of voice-- all these things that make up a good part of communication but aren't word-based [are difficult for those with Asperger's]," he said. "Research shows that's where a lot of [communication] breaks down and why people with Asperger's syndrome have some problems in social situations understanding how they should react, understanding how people react."

"Children with Asperger's have a really easy time communicating with adults," Jitlina added. Because of this ease of communication, she continued, adults may have a hard time recognizing the child's difficulty with reciprocal communication. Individuals with Asperger's can be educated about social skills, allowing them to learn things that non-Asperger kids pick up naturally.

"Things that we take for granted or learn automatically need to be broken down into smaller steps for Asperger individuals to be successful," said registered psychologist and retired councillor Trish Huntington.

Most people have some degree of repetitive behaviours, social and communication issues, so these aren't set criteria for an Asperger diagnosis. Generally Asperger's is considered when these sorts of characteristics cause significant impairment in social skills, ability to have friendships or academic achievement. A diagnosis is a judgement regarding how much the symptoms impact day-to-day life, and whether it affects life long-term.

People with little understanding of Asperger's generally see it as a childhood condition, but there are many post-secondary students and adults who are dealing with the challenges of Asperger's. Most of the research is done with children, and early intervention is possible when Asperger's is recognized at a young age. "Asperger individuals have been more readily identified in the last decade or so," Huntington said. "I do not believe it is a childhood syndrome-- something that you 'grow out of'-- but one that requires more attention as these students become older and go on to junior high, senior high and post-secondary education."

Huntington explained the need for better educational programming and assistive support in order to help Asperger individuals interact with society. Negative perceptions generally stem from grade-school teachers' interactions with Asperger individuals, she added. "If teachers are truly loving, caring and accepting, they will model this to their students who will react accordingly. Teachers can be instrumental in helping students develop empathy and acceptance of others who may have various challenges in learning or interacting with others. Parents are the Asperger individual's number one advocate and need to continue to support their child in any way that they can."

The researchers from ASERT found that some people, such as employers, think that individuals with Asperger's are not able to work.

"One thing we have to stress is these individuals have so many unique positive qualities," said Alyssa Altomare, U of C faculty of education master's student and ASERT researcher. "We need to focus more on the positive qualities that a person with Asperger's syndrome has, as opposed to the things they can't do."

Researcher Matchullis suggested avoiding "pigeon-holing" individuals based on the Asperger label. "That's just one small part of who they are."

As a parent of an Asperger's child, Corrine Wiedemann describes individuals with Asperger's as lacking social skills, not picking up on social cues and observes that they tend to have fewer friends. She admits Asperger's is "hard to explain to people." She finds that most people don't know anything about the condition, yet she has found that when she is talking to a parent of a child who has Attention Deficit Disorder or other behavioural problems, they understand each other right away.

"Most people in that realm, they click-- they understand the difficulty of raising a child or that getting them what they need is hard," said Corrine.

Ryan Wiedemann, Corrine's oldest son, started having troubles in grade two. He never played with kids, he played beside them. Huntington recognized Asperger traits in Ryan, so Corrine took him to the local health unit where a panel of doctors and specialists decided as a group that he had Asperger's. The nature of Asperger's makes it hard to diagnose-- there isn't one clear test, or one characteristic that confirms Asperger's. Ryan would get in trouble at school, showing signs of frustration and so the teacher would send him to the office where he could read. Corrine said this was not effective punishment because he would get in trouble just to get out of class to read.

"I couldn't stop it. I didn't know what to do," Corrine said. "The more he was learning, the better his behaviour was," she found, adding that Ryan received a lot of support at his school.

"He fell into the right spots where he needed to be-- there are a lot of kids who don't," said Corrine.

Currently, Ryan is in his third year at the University of Alberta's Augustana campus in Camrose, where he just switched his major from biology to computer science. He has had some heated arguments with his roommate-- Corrine described one that involved Alphagetti. Ryan's roommate calls it alphabet soup, but to Ryan it's pasta and sauce.

He faces some challenges that most university students don't, such as anxiety over talking to cashiers to pay for his textbooks and tuition-- it's not picking out the books, it's the one-on-one interaction with the cashier.

"Sometimes I'm nervous about things I don't need to be nervous about, like talking to people," said Ryan.

"I'm not so good socially," he said, yet he doesn't see his Asperger's as a problem. "I am the way I am," he continued. "It's hard to compare myself to something else that I'm not. They just decided to put a name on it, and maybe it's not so strictly defined."

Ryan doesn't like going to big groups where he doesn't know the people and he said that his favourite way to socialize is through a game where there is some structure. "If I don't know the people well I find it really awkward," he said.

Corrine is worried about Ryan joining the workforce, and wonders if Ryan should tell a prospective employer in an interview about his condition. She's concerned that they would create a bias without an understanding of Asperger's, and that they "won't see his ability, they will see his disability."

Kat Fowler is a fourth-year student at the Alberta College of Art and Design who was diagnosed with Asperger's at 16. She doesn't fit most people's understanding of Asperger's.

"One of the common misconceptions is that there is just one form of Asperger's," she observed. "I don't think a lot of people understand what it is."

"It comes in a wide variety of forms. I don't think that the portrayal and stereotype does it justice."

Usually Asperger's is seen as a male disorder because more boys are diagnosed than girls. Researchers just recently started diagnosing girls with Asperger's and Fowler has never met another female with Asperger's.

Fowler identifies more with the right side of her brain, and she says that most other individuals with Asperger's identify with the left side of their brain. She's a lot more creative than analytical or logical ­-- and her Asperger's is expressed in a different way than Ryan's.

"I love being surrounded by people. I'm very communicative, and I'm not analytical," she said in her quick style of speaking.

"It's kind of cool knowing you see the world differently than everybody else," she said. Fowler doesn't think she would be as creative without her Asperger's. "To a person with Asperger's there are connections in almost everything," she explained. She described her thoughts as constantly exploring a big massive maze in her mind.

She can misinterpret what people are saying to her because she has no context, lacking an understanding of tone.

"I have a hard time picking up on tone. I might not be able to realize that a friend is sarcastic and I can often feel offended by that person, not realizing what they mean," Fowler added. "I'm a very literal person."

It's also hard for her to pick up on social cues. For example, crying and making a scene in public. "Until I was about 16 I didn't even realize that was a social faux pas."

Fowler doesn't like change and her routine is very important to her. "It takes me quite a bit of time to adapt to certain things," she said. When her mom would change the furniture around in Fowler's bedroom when she was younger, she wouldn't sleep for at least five nights because she had to get used to the change. Her mother could suggest something and she would refuse, but adopt it later. Change had to be on her own terms. "I didn't want to be an angry or a disruptive child, but it just felt like that was the only answer."

Fowler's parents have always been her strongest support system. "They never made it seem like there was anything I was incapable of doing, but if there were things I was especially struggling with, they made sure I had the help I needed." As she's grown older, her perceptions on things have changed and she has learned that there are many things she has to accept.

"It took me a whole year to get comfortable at college and to get into my groove. I even considered dropping out because I was so adverse to the changes," Fowler added. She acknowledged that knowing about her condition helped her to cope with changes and with her behaviour, but there are times she felt it was too easy to use her diagnosis as an excuse. "I feel as though if I tell people, they think I'm expecting them to give me special treatment, but it's just to give somebody awareness," she continued. "I let them make of me what they will."

She likes when friends try and gather an understanding of how she works, yet she knows that it is difficult. "We're just one big mass of contradictions."

Fowler can be sassy, tough and confident, but as people get to know her more, they become privy to her moods, her highs and lows. She can also be vulnerable, sad, unsure and angry, and friends might wonder why she is suddenly hiding in the corner with her book. "I have a lot more buttons that are easily pushed, and I guess you could say a lot more quirks, with sudden and inexplicable sadness or anger," Fowler explained.

"You feel like a monster when this sudden hot spurt of anger bursts into you and you want to rip your brother's head off and call him a whole bunch of horrible names because he moved your laptop. You're completely aware of how ridiculous and foolish it is because you are a mature person. It's very complex. On one end, I'm fully aware that it's wrong, but on the other, I'm helpless to this rush of emotion that runs through me and makes me want to instantly react."

Having these intense mood swings and feeling completely misunderstood because of them has influenced Fowler to become "a person who tries to understand everybody."

"It seems like there isn't really a place for a person like me. At the same time, of course there is. We need the misfits, we need the outcasts because they make the world more fun. They add more colour to it and allow things to be shown in a different way," Fowler added.

"I can guarantee you that there's no one else like me in the entire world."

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Comments

Great article, Aspergers is a massively misunderstood disorder. Lack of diagnosis doesnt help either. There is the AQ test which is a good source for anyone unsure they have aspergers http://www.aspergerstestsite.com/75/autism-spectrum-quotient-aq-test/