Novel approach to Asperger's

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Gavin Walberg, 11, and his mom, Charlene. Gavin has Asperger's Syndrome. (TREVOR HAGAN / WINNIPEG FREE PRESS) Photo Store

The goods on AS

Asperger's Syndrome (AS, also known as Asperger Syndrome or Asperger Disorder) is a pervasive neurodevelopmental disorder that causes significant problems in socialization, communication, thinking, behaviour and other areas of functioning.

The cluster of symptoms was first described in 1944 by the Viennese pediatrician and child psychiatrist Dr. Hans Asperger, who called it "autistic psychopathy."

People with AS may also experience anxiety, attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), Tourette syndrome, anxiety, depression and various other learning disabilities.

Estimates on the prevalence of classic Asperger's vary widely: rates range from one in 25 to one in 10,000 children because of different diagnostic criteria used in the U.S. and Canada. But an estimated one in 165 people has some form of autistic disorder.

The ratio of males to females with autism spectrum disorder is four to one. However, with Asperger's it is 10 to one.

The classification Asperger's Disorder has been dropped by the American Psychiatric Association's new diagnostic manual. Instead, it will be incorporated under the umbrella term "autism spectrum disorder" when the DSM-5 is published in May of 2013.

Famous "Aspies" (not all formally diagnosed) include: Dan Aykroyd (actor), Daryl Hannah (actress), Temple Grandin (animal behaviourist), Stanley Kubrick (film director), Glenn Gould (Canadian pianist), Albert Einstein and Isaac Newton

Signs, symptoms of an 'Aspie'

Has average to superior intelligence

Is detail-oriented but can't see the big picture

Prefers information that is factual or technical rather than abstract

May talk incessantly about facts with no point or conclusion

Makes blunt comments

Has a tendency to interpret information literally

Has marked impairment in social interaction, which may include an inability to establish eye contact, read non-verbal and social cues, and have a two-way conversation (i.e., can talk but can't respond)

Is overly shy or inappropriately outgoing

Shows a lack of empathy for others

Fails to develop peer relationships

Demonstrates restricted, repetitive behaviour and activities, including an obsessive preoccupation with narrow interests (i.e., doorknobs, hinges, astronomy, history)

Has inflexible routines or rituals and gets upset if these are interfered with

Has repetitive mannerisms such as jumping, rocking, pacing, hand flapping or finger twisting

- www.canadian-health.ca, Asperger Manitoba

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Gavin Walberg proudly identifies as an ‘Aspie.’ (TREVOR HAGAN/WINNIPEG FREE PRESS) Photo Store

Connor, who is in Grade 3, is having "a few issues" at school. "My teacher, Mrs. Winters, and I don't see eye to eye," is how he puts it.

Connor is a sweet kid and a brilliant student who strongly dislikes hugs and has an intense interest in math, dinosaurs and dogs -- factoids about which he loves to share with everyone he meets. His "issues" arise around his interpretation of school rules, attempts to read body language and facial expressions and his, well, honesty.

Take the time his teacher's face reminded him of a TV commercial he'd just seen. "Mrs. Winters," he asked her, "did you know that for $29.95 you can buy Magic Wrinkle-No-More Cream from the TV?" He ended up in the principal's office. Along the way, he counted all the beige floor tiles.

Connor has Asperger's Syndrome, a neurodevelopmental disorder characterized by significant difficulties with social interaction, everyday communication, and understanding and displaying appropriate emotions. It's considered a high-functioning form of autism.

Connor isn't a real boy, but rather the quirky protagonist in a new e-book, Spaghetti is NOT a Finger Food (and other life lessons), which Jodi Carmichael wrote to help teach students (ages eight to 12) about the disorder.

"The theme is acceptance -- of yourself and others," says the Winnipegger, whose first novel was published by the California-based Little Pickle Press.

Connor isn't trying to be rude, or a know-it-all, she says, when he states the obvious (factually correct but socially insensitive) or bores people with his facts and figures.

"It's almost as if that social filter that says 'What I'm saying is not being received positively' doesn't work. You're boring somebody and don't realize it," says Carmichael, a school secretary and mother of two children, ages 11 and eight.

The character of Connor initially popped into her head as just a quirky kid ranting about his day at school, but as she gave him a voice, a bigger story -- and message -- began to emerge.

"They say write what you know. I have ADHD (attention deficit hyperactivity disorder), so some of his personality is me," Carmichael, 43, who was recently diagnosed, says. "But I also did a lot of research to make sure his characteristics were a true reflection of a child with Asperger." The book's manuscript was reviewed by two child psychologists.

The book doesn't mention the condition by name, she says, mainly because it's written in the first person from Connor's perspective.

That term, incidentally, is being dropped from the American Psychiatric Association's (APA) diagnostic manual, the guidebook that defines what constellations of symptoms doctors recognize as mental disorders. It recently underwent its first major rewrite in nearly 20 years.

When the new edition, known as DSM-5, comes out next May, Asperger's will no longer appear but be incorporated under the umbrella diagnosis of "autism spectrum disorder," which is already used by many experts in the field. (The new category will include kids with severe autism, who often don't talk or interact, as well as those with milder forms.)

How to define the various ranges of autism was one of the most hotly debated changes in the DSM-5 revision. Some advocates opposed the idea of dropping the specific diagnosis of Asperger's, arguing that many who have the condition embrace their quirkiness and will continue to use the label.

"We have a lot of people who self-diagnose and part of their identity is Asperger, and they also see it as something that is different than being strictly autistic," says Charlene Walberg, president of Asperger Manitoba. "Although they have struggles, they also see the positives of it."

Her son, Gavin, 11, who was diagnosed with at age six, is one of the people who proudly identifies as an "Aspie."

Although he has never dumped a bowl of spaghetti over his head in the school cafeteria, she could see him in the character of Connor, Walberg says. Like the fictional boy, Gavin paces when he's stressed out, has sensory sensitivities, and has difficulty with social nuances.

"He just doesn't get the point of things sometimes. One day he came home from summer camp for kids on the spectrum and said, 'Mom, did you know that after you ask me how my day was, I'm supposed to ask you how your day was?'" says Walberg. "You can see him processing: 'I really don't care about your day, but I'll ask anyway because they told me I'm supposed to.'"

The term Asperger's, she says, puts a helpful label on something her son and others like him are trying to understand, as they navigate a world of "neurotypicals" (the term for us non-Aspies).

The biggest challenge is fitting in, says Gavin, who has also been diagnosed at different times with anxiety, obssessive-compulsive disorder (OCD), ADHD, and Tourette syndrome. "Sometimes I don't feel like I fit in with the other kids. It's easier for them to make friends," he writes in an email interview.

While he already has "a pretty good life," Gavin says he does wish the rest of us would see how special people with Asperger's are and how they can fit in if given the chance. "We should be treated like kids -- that might need a little extra help," he writes.

Bryan Kehler, 31, says being diagnosed with Asperger's when he was 16, after having been slapped with all kinds of labels by various doctors and specialists, allowed him to finally make sense of his world.

"I saw it as a positive thing and I was able to get certain support, especially with my education," says the Winnipegger, who holds degrees in environmental science and philosophy. He's also a Asperger Manitoba board member.

As for the decision to drop Asperger's disorder from the new diagnostic manual, it's hard to see anything positive coming out of that, says Kehler.

"There's a possibility, perhaps a strong possibility, those people under the new label (autism spectrum disorder) won't receive the same supports or the same quality of supports," he says. "It's almost an affront to us, since it's not acknowledging that we exist as a separate identity, that we're unique and similar to, but not the same as people with autism."

A lot of people in the Asperger's community want to hold on to the label, he says, "because it's part of who they are."

Jodi Carmichael's e-book, Spaghetti is NOT a Finger Food, is available for $6.99 through Amazon.

carolin.vesely@freepress.mb.ca

Republished from the Winnipeg Free Press print edition January 8, 2013 D1