Asperger's activist in Canada says pop culture's current focus on the syndrome may not help

From The Globe and Mail in Toronto:

"No, quite frankly, I do not see its appeal at all," Margot Nelles (pictured) says flatly. The executive director and founder of Aspergers Society of Ontario is talking about the pop-culture fetish status the neurobiological disorder has gained in the past 10 years.

Asperger's Syndrome, a disorder in the autism spectrum first identified in 1944 by an Austrian pediatrician, Hans Asperger, has become a popular dramatic plot device in television shows such as House, Bones, Law & Order and Degrassi: The Next Generation,. It defined the fascinating profile of the literary protagonists in Mark Haddon's 2003 award-winning novel, The Curious Incident of the Dog in the Night-time, and in Stieg Larsson's 2008 posthumous work, The Girl with the Dragon Tattoo.

Now, it's getting a starring role on the silver screen in the movie Adam, released in Canada last Friday. The film's central character is played by Hugh Dancy, the rising British star, who likely saw the profile of a character with Asperger's as a creative, career-defining challenge. With his obsessive, esoteric interests and inadvertent social faux pas, Adam tries to forge a romantic relationship with a new tenant in his Manhattan building - Beth, played by Rose Byrne. The movie is a romantic comedy of sorts.

Adam's affliction, which involves an inability to make eye contact, understand what others are thinking or grasp the concept of socially inappropriate questions or behaviour, is often played for laughs. Early on in their friendship, Adam awkwardly asks Beth if she felt the same sexual excitement he did when they were sitting on a park bench.

Ms. Nelles isn't convinced the attention helps her cause.

"Any kind of awareness in the mainstream culture is good, I suppose. But it's a double-edged sword. You have to ensure that it doesn't negate the severity of the problem," says Ms. Nelles, a mother of three children, two of whom live with Asperger's, as well as some other disorders - Tourette syndrome, attention deficit, anxiety and depression - that often accompany the diagnosis. "It is complex, so individual. You can't take a page out of a book and say, 'They do this and this.' It's a myriad of things, and unless you live with it and work intimately with someone who has it, it is difficult to understand."

In part, the fascination with Asperger's is due to the growing social acceptance of neuro-diversity - a buzzword that aims to promote an awareness that not all brains are similarly wired. Many of the books about the disorder have been written since the 1990s, and along with that interest has come a revisionist diagnosis of many creative and scientific geniuses.

Isaac Newton and Mozart are both routinely claimed to have been Aspys, as patients with the condition are commonly known. In his 1998 book, Glenn Gould: The Ecstasy and Tragedy of Genius, psychiatrist Peter Ostwald claimed that the mercurial Canadian piano prodigy had Asperger's, a suggestion that goes unacknowledged in the new feature documentary Genius Within: The Inner Life of Glenn Gould, which will have its world premiere at the Toronto International Film Festival next month.

The ascendancy of Asperger's as a popular fictional device or "It Disability," as some have called it, is partly due to the fact that patients often present as "normal," except for their social awkwardness and obsessive interests.

Hollywood likes to portray them as tragically misunderstood and endearingly eccentric.

"There is a tendency to beautify the challenges," says Ms. Nelles, who consulted on Degrassi last summer when writers planned to introduce a character with Asperger's into the teen drama. The reality is that while some achieve success - one of the criteria for a diagnosis is high IQ - the majority suffer from debilitating problems that leave them unable to function effectively in society.

"It's like being dropped in the middle of rural China without a guidebook or a language book, and you go from home to home and feel that somehow you have insulted everyone," she explains. "They have trouble with the script of life. And they learn from an early age that they are different. They don't know why, so there are major self-esteem issues and self-doubt. And once the bucket starts to fill up with negative social experiences, if intervention isn't made, they self-impose isolation, because it is easier to be alone than to be rejected."

Diagnosis is not easy. Children with Asperger's are often highly verbal and cognitively advanced. Doctors and therapists offered a series of misdiagnoses with Ms. Nelles's first child, who is now 18. Starting at age 2½, he was thought to have learning disabilities, gender associative disorder and oppositional defiant disorder.

"One said he was simply gifted, and that if I just got him some enriched work that would help."

He was finally diagnosed with Asperger's at the age of 11, which came as a relief not just to Ms. Nelles and her husband, but to their child. She recalls him saying, "I thought I was a broken and bad kid."

With her second son, now 11, she recognized the disorder by the time he was 18 months old. "If [normal] kids watch a movie like 101 Dalmatians 100 times, he would watch it 150 times, and everything had to be exactly the same. The light in the room had to be the same. If you dared move his chair one inch, he would have a freak-out. And you couldn't interrupt him. Otherwise, he would have to watch the movie from the start again." He was diagnosed at 3.

The disorder is particularly challenging in adolescence, when peer friendships become increasingly important. "They start looking for people who will accept them. They often go to marginalized, risky groups," she explains, adding that many get into trouble with the law. In adulthood, keeping a job is difficult, if they manage to get one.
Ms. Nelles, 46, started the Aspergers Society of Ontario 10 years ago, after her eldest son was diagnosed with the ailment and she found little support within the autism community - partly because Asperger's is considered to be a less calamitous disorder. But the common reference to it as "high-functioning autism" is erroneous, she says.

"To get a diagnosis of Asperger's, you cannot meet any of the criteria of autism."

Patients need specialized help. "If you don't have specialized treatment, it's like a patient with bowel cancer going to a doctor who treats breast cancer," she says.

A charitable organization that's dependent on private donations, the Aspergers Society of Ontario offers workshops, a helpline, training at schools and work placement consulting.

"Part of my therapy has been my involvement with other parents," says Ms. Nelles. "Parents phone to talk about the problems, and I say, 'Yes, I believe you.' And when they hear me talk about it, they go, 'Oh, it's like you live in our house.' Part of my work is giving other parents the sense that they are not alone."