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Kids on autism spectrum appearing more on TV, but is media getting it right?
TORONTO - When "Parenthood" creator Jason Katims created the character Max Braverman — an intelligent, inscrutable, insect-obsessed youngster with Asperger's — he had in mind his own son, Sawyer, who was similarly diagnosed.
But while many are absorbed in the travails of the mop-topped Max on the generously open-hearted family drama, Katims' own teenaged son isn't among them.
"Everybody else in the family watches it but he doesn't," the Emmy Award winner said in a recent telephone interview, chuckling softly.
"He'll really just watch sports, it's really all he's interested in watching. He also likes things like politics and conspiracy theories, those kinds of things. But he doesn't really watch scripted television.
"I mean, he's trying to put me out of business."
Fortunately for Katims, millions of other people are playing close attention — particularly those with a loved one on the autism spectrum.
And sadly, those numbers are growing. One in 88 American children has an Autism Spectrum Disorder (ASD) according to the Centers for Disease Control and — while no federal monitoring system exists in Canada to provide a similar rate of prevalence — ASD is the most common childhood neurological disorder or severe developmental disability here.
(A controversial decision was recently made to fold Asperger syndrome, a type of high-functioning autism, into an umbrella diagnosis for autism spectrum disorder, but the families interviewed for this story largely used the terms interchangeably).
Television can often be painstakingly slow to adapt to such shifts in demographics. But it's clear that some of the challenges faced by the autistic population have captured the imagination of TV writers, who are increasingly penning eccentric characters whose quirks would seem to align with typical characteristics of ASD on shows including "The Big Bang Theory," "Bones" and "Community."
These characters are never diagnosed, but they are smart, focused and passionate about certain subjects, stubbornly rigid, and navigate human relationships with either much effort or bemused distance, confused by sarcasm, idioms or other unspoken rules of social interaction that come naturally to most.
These characters are also incredibly familiar to some people on the spectrum and those around them.
But if these shows are helping to craft the popular understanding of a neural disorder still largely shrouded in mystery, it must be asked: Are they getting it right? And how do people on the spectrum or those close to them feel about the representations?
It was a consideration of crucial importance to Katims, who of course counts himself among that community. When the 52-year-old began developing "Parenthood" — after bringing his beloved gridiron TV drama "Friday Night Lights" to a gratifying conclusion — he saw an opportunity to tell stories that weren't being told on television: His own.
But he also felt a heavy sense of responsibility, almost immediately.
"When we were starting out, I really had a lot of apprehension about our ability to tell the story accurately," he said.
"I was sort of overwhelmed by the challenge of doing that and was sort of determined to make it not feel like a bad television version of it, but to make it feel real."
One way he accomplished that was by culling many of Max's stories from his own life. Though Katims does his best to nimbly sidestep autobiography, sometimes he'll casually share details of his home life with his writers, leave the room, and come back to find his personal anecdote expertly adapted into a pitch for a storyline.
The show (which airs Monday nights on Global) also employs behavioural psychologist Wayne Tashjian to work with the show's cast and crew to ensure accuracy. And Katims is quick to pay lavish praise to precocious 15-year-old star Max Burkholder, who portrays his TV counterpart with such a keen eye for detail, Katims says he's been able to delve far deeper into Max's journey than he originally anticipated.
"There's this cathartic element of being able to write about something that's personal to me, and put it out there in the world," he said.
And the portrayal is certainly having an effect.
Tom Hibben, a 30-year-old paramedic from Oklahoma City, was still reeling from the diagnosis of his son with Asperger syndrome when he and his wife sat down to watch the "Parenthood" pilot back in March 2010.
In that episode, a teary-eyed Kristina Braverman (Monica Potter) informs husband Adam (Peter Krause) of their son's diagnosis. In volatile disbelief, Adam spits back: "Asperger's? Like autism? Max is not autistic! I've seen autistic kids!"
Watching at home, Hibben and his wife exchanged stunned glances. Their memories wrenchingly recent, they were initially a little "horrified" by what they were watching, but they also got sucked in and continued following the show. Nowadays, they even sometimes do so with their son (now nine years old), who identifies with aspects of "Parenthood" — specifically, Max's non-plussed reaction when he learned he had Asperger's.
Hibben, meanwhile, found himself more strongly relating to the stomach-churning anxiety Adam and Kristina felt when Max — galvanized by his righteous indignity over the removal of a school vending machine — decided to run for student council president.
The fictional Bravermans were stuck; they wanted to support him but didn't want to see his spirit crushed.
"That kind of hit home for us," said Hibben, a father of three who authors the blog www.adventuresinaspergers.com. "You want them to get involved, but do you want them to have that potential for them to get stomped or made fun of?"
That storyline culminated in Max delivering a stirring speech to his classmates explaining the particulars of what makes him different, resulting in his successful election.
Karen Wesley watched that scene through tears. The Austin, Tex., mother has three children, two of whom are on the autism spectrum. Her 16-year-old son had recently written an essay about his own struggles and read it over the PA system at school.
"Oh my God, I was in tears because (Max's) speech was very similar to the one that my son made," said Wesley, who writes about her life at confessionsofanaspergersmom.blogspot.com.
"I just admired his bravery, and I won't say the average Asperger's kid would do that. It touched me."
Katims hears stories like this from parents of autistic kids all the time. The stories move him, but also reinforce just how slender is his margin for error.
"For people in that community, they're passionate about the show (but) they're also very discerning," he said. "They are not without their criticisms as well."
Indeed, "Parenthood" fans with ties to the autistic community occasionally seem to possess as fastidious an eye for inconsistencies and inaccuracies as a hotshot trial lawyer poking holes in a witness's story.
Among the complaints? Some feel that Max's struggles — with compromising, socializing and empathizing — are resolved too quickly. Some fret that the Bravermans should not have waited as long as they did to tell Max about his condition. Some think his "meltdowns" are too severe and frequent, while some feel the opposite.
And many point out that the Bravermans have a near-endless supply of resources — an in-house learning aide (at one point), one stay-at-home parent and even the option to put Max in a school specially suited to him — that aren't available to real families without crushing financial burden.
(Of course, this is television, where underemployed 20-somethings are always capable of affording cutting-edge fashion and spacious, lavishly appointed New York apartments).
In those respects, "Parenthood" is held to a much higher standard than shows that choose not to diagnose their characters' behaviour.
"Bones"' Canadian-raised creator Hart Hanson once told the Newark Star-Ledger that he based the show's central forensic anthropologist in part on a friend with Asperger syndrome, but decided not to label the character because he wanted the Fox show to appeal to as broad an audience as possible.
As played by Emily Deschanel, Temperance Brennan (nicknamed Bones) is a brilliant scientist who struggles to parse social cues in her dealings with perennially at-odds love interest Booth (David Boreanaz), and whose clinical curiosity and lack of emotional expression sometimes leave co-workers complaining that she's as chilly as the corpses she so expertly probes.
Canada's top-rated show "The Big Bang Theory" — a comedy about nerdy, socially awkward men and the patient women they don't really deserve — has a somewhat similar character in its breakout star, Sheldon Cooper (a role that has earned actor Jim Parsons two Emmys and a Golden Globe).
Sheldon, like Bones, is a bona fide genius, a physicist of considerable renown and a walking encyclopedia who exhausts his friends with deep reserves of obscure trivia.
But he also abhors physical contact, sticks so religiously to routine that he won't let anyone sit in his spot on the couch, possesses such an intractable obstinacy that friends roll their eyes at any nascent signs of a disagreement and treats social convention like the one complex puzzle he can never quite solve.
He actually summed up these issues quite succinctly in a recent monologue toward the end of an episode.
"You may not realize it, but I have difficulty navigating certain aspects of daily life," he said to his friends. "You know, understanding sarcasm, feigning interest in others, not talking about trains as much as I want to. It's exhausting."
But, as on "Bones," "Big Bang" has never directly confronted the reasons behind Sheldon's idiosyncrasies. The show's co-creator, Bill Prady, has said they resisted diagnosing Sheldon because the resultant responsibility would be too much for what is, at its heart, a goofy sitcom.
Still, many of those in or close to the autistic community love the character regardless.
"We adore Sheldon and we totally get him," said Lori Sherry, founder and president of the Asperger Syndrome Education Network (ASPEN), who counts "Big Bang" as her favourite TV program.
In fact, there's an aspirational dimension to Sheldon, given that he's successful and independent (even if he doesn't drive).
"We can only hope that we're raising a Sheldon," Hibben said. "My son reminds me, I hope, of Sheldon, because he's the smartest kid I know. He can read Egyptian hieroglyphics but he puts his pants on backwards every day of his life.
"We watch that (show) with a bit of optimism. And we get the jokes a little more. People with kids on the spectrum connect to it a bit more."
On both "Bones" and "Big Bang" — as well as the oddball comedy "Community," which depicts Danny Pudi's gentle-but-detached Abed in a similar fashion — the traits that distinguish these characters from their friends and co-workers also make them fertile sources of comedy.
Both Sheldon and Bones generate laughs from their off-kilter interpretations of social customs and their blunt honesty. Katims, too, acknowledges that he loves writing for Max.
"It's just always fun to write a character who will say whatever is on their mind," he said. "I enjoy writing Max and it's similar sometimes to how I enjoy my son. An aspect of one of the things I really like about him is how authentic he is.
"He doesn't know how to say anything false. And while that's a real challenge in his life for many reasons, there's also something very charming about it."
Hibben, for one, has no problem with finding humour in these characters, because he does the same with his son.
He relates a recent story in which his wife accidentally sent his nine-year-old to school with a peanut butter and jelly sandwich, forgetting that he detested jelly.
"He looked her straight in the eye (later) and said: 'You need to be more careful next time you make my lunch. You screwed it up again,'" Hibben recalled, laughing. "When I was a kid, I'd be unconscious. But he has no fear of repercussions. He corrects teachers when they use incorrect grammar in class."
It's not as though, Hibben points out, their lives are sad.
"Sometimes it sucks, but most of the time it's just freaking hilarious."
Added Wesley: "My kids, if I didn't laugh a lot at the situations, I probably would be in tears."
Wesley, for her part, loves "Big Bang" too. She says her kids draw strength from seeing characters who bear some resemblance to them on TV. But she says it would be beneficial if producers at least alluded to the possibility of a diagnosis for Sheldon.
Natalie Dalton, a mother of two from St. John's, N.L., with a son diagnosed with Asperger syndrome, disagrees. She "adores" Sheldon and says that his Asperger qualities are readily apparent, but magnified to the thousandth degree.
Which is why she'd rather not see him overtly associated with the condition.
"To diagnose his character now would be to make a mockery of Asperger's/autism," she wrote in an email. "Although I love the show, I would be offended if Sheldon was meant to accurately depict a person with Asperger's."
Dr. James Bebko, a professor and autism researcher with York University's department of psychology, is similarly skeptical that Sheldon displays anything more than a shallow resemblance to someone actually dealing with Asperger syndrome.
"One of the things that's part of society now is that it doesn't seem OK anymore just to be eccentric — it has to be pathologized in some way," he said.
"Part of the dynamic of what's going on is that (viewers) with various disorders or challenges are also trying to normalize their experience or their child's experience, so they're looking for examples of that sort of behaviour in recognized personalities or in media."
And Bebko says it's easy to understand why: Sheldon and Bones are highly successful professionals, and thus optimistic examples for young people on the spectrum.
But their lives are sadly not reality for most people with different forms of autism.
"I know a number of individuals with Asperger who are successful in their lives — but they are the exception," Bebko said.
In fact, a recent study published by Pediatrics found that one in three young adults with autism had no paid job experience, college or technical school nearly seven years after high-school graduation — a poorer showing than those who have mental disabilities.
While Bebko thinks that TV shows drawing attention to autism is a positive development (and he likes what little he's seen of "Parenthood"), he warns that there's a danger in viewers forming strong impressions from fictional media.
"What's important is that they have to realize it's entertainment," he said.
Like Bebko, Autism Speaks executive vice-president of programs and services Peter Bell emphasizes that autism is a spectrum disorder that takes many distinct forms. At one end, there are some highly functioning, independent people who can resemble those being depicted on TV. At the other end, there are people with much more significant challenges, some of whom need 'round-the-clock supervision.
Bell points out that roughly 40 to 50 per cent of the autistic population has communication challenges so significant many are largely non-verbal, and that population is hardly represented on TV at all. ("Touch" casts Toronto's Kiefer Sutherland as the father to a mute son but doesn't diagnose the child).
"It does run the risk of stereotyping what autism might look like," said Bell, an avowed "Parenthood" fan who even had a cameo on the show.
"Because I think for the vast majority of people who live with autism, they do have very significant challenges that probably wouldn't play well on the screen."
So we await the depiction of a character at the more severe end of the autism spectrum.
Meantime, Katims continues to explore the real anxieties he experiences as the parent of a child on the spectrum — questions of whether his son will marry or hold a job — to the simultaneous delight and trepidation of other parents trying to chart a path in similarly murky waters.
And those from outside the community are also watching — and learning. After the second episode of the show aired, Google searches for "Asperger's" spiked. (Actually, many of the curious seekers badly misspelled the word).
So while "Parenthood" is just a TV show, to many people it means more. And that group, of course, includes Katims himself.
"Obviously, it's very personal to me," he said. "I've heard many stories over the time of doing the show, of people who have brought their own children in (for diagnosis) through seeing the show.
"People recognize Max in their children, or their grandchildren, or their nieces and nephews."
Asked how it feels to wield such positive influence, Katims pauses.
"It means a lot to me."
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(1 of 7 articles for this year)03/31/2015 4:01 PM 0
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