The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘neurodiversity

Alpha and Omega

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Photo by Justin Stephens, Syfy

Before I analyze my next story, I want to inform you that this blog is a finalist for Twin Cities CBS affiliate WCCO’s Most Valuable Blogger competition in the health/fitness/medical category. Click here to view all the entries in the category. Voters can select their favorite blog in each category once per day. The winner receives a $50 Amazon gift card.

Speaking of value, Jean Winegardner of The Washington Times explores the usefulness of an autistic character on Syfy’s new series, Alphas. The series focuses on people whose neurological anomalies give them special powers while simultaneously dealing deficits and difficulties brought on by their differences. One of the five main characters, Gary Bell, is a high-functioning autistic adult who can read a wide range of electromagnetic frequencies, including television, radio and cell phone signals.

Actor Ryan Cartwright, who portrays Bell, enjoys the complexity of the character that he believes extends beyond the autism diagnosis. Naturally, Gary makes little eye contact, his speech patterns are stilted and echolalic, he relies on rules learned by rote and carries a strict adherence to routines. All are common traits of autism spectrum disorder. However, the kicker is Gary’s sense of humor, giving him an extra personality to challenge mainstream notions that autistic people are humorless (an idea promoted in the days of Rain Man).

Much detail and care was included in the science portion of the science fiction show. Dr. Susan Bookheimer, a faculty member of UCLA’s neuroscience program, is a consultant for Alphas who reviewed each script for the show’s inaugural season while offering on advice on aspects of Gary’s presentation and symptoms. Cartwright’s research included consulting with people who work with autistic individuals, reading books by autistic authors Temple Grandin and Daniel Tammet along with blog sites created by autistic people (I wonder if he came across this one :-p) and watching documentaries on the subject. Cartwright credits this research for helping him understand the reasoning behind the attributes and difficulties of autistic people to create and not imitate the physicality of Gary. Cartwright’s biggest goal? Playing the person and not the disorder

With the story part reporting and part editorial, Winegarden expresses approval for the show introducing a complex character with autism as opposed to stereotypical characters that permeated mainstream media in the early days of autism exposure. Bookheimer concurs, as the show seeks to examine themes of neurodiversity as the topic itself becomes more embroiled in public dissemination.

Science fiction itself has always opened doors to addressing ideas and topics among current events that could never be extrapolated by media set in the present because of raw, impulsive emotional responses from segments of the viewing audience. Star Trek and its spin-offs before the 2009 reboot contained many allegories among its episodes and races, including Star Trek VI: The Undiscovered Country, with a 23rd century version of Chernobyl and the end of the Soviet Union. Alphas may not be as futuristic, but the science fiction elements of neurological conditions leading to superhuman powers does communicate to viewers that disabled people aren’t so simplistic in real life. Several examples of autism in mainstream media used to place autistic individuals as “out there,” separated from the public domain. Recent portrayals, including a young boy with Asperger’s on the second version of NBC’s Parenthood and now Alphas, approach the condition with a mission to deconstruct what the public erected years ago about the condition.

Credit must also be given for Winegardner’s approach to the story. There are few indications of the article presenting itself as a column until the end of the story, when Winegardner analyzes the character of Gary Bell and the effort from Cartwright and the show’s production staff. While I doubt anyone would be critical of a column praising a television show for avoiding stereotypes, columns and editorials can sometimes fall into traps created by the writers (or pundits on television shows), where the writer eschews fact and reasoning for an egotistical nature. Winegardner’s structure is very similar to what a straight-up reporter would write, and prefaces her sense of encouragement with a behind-the-scenes look for a rookie series seeking to establish itself in the Syfy lineup, using both the actor and a consultant whose expertise is the science of the brain as sources for her analysis.

While an opinion is more blatantly expressed, opinion articles sometimes employ the tactics of more neutral stories that make up the front page of newspapers, as such work can carry the same effect in both instances. Thanks to Winegardner’s interviewing, she doesn’t have to rely solely on her own word even in a news environment where someone’s word is sometimes given more credence than traditional reporting. A positive side effect is the illustration of commitment from Alphas to accurate portrayals within its neuroscience surroundings.

As with any art form, television isn’t immune to subjectivity from the viewing audience, critics and advertisers, but even if Alphas joins the long list of “one-and-done” programs, expect future shows that tackle neurodiversity to draw inspiration from the latest work of science fiction.

Ari Ne’eman, “wired” and unfiltered

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Courtesy Wired.com

Two things became clear to me as I read a Q&A by Steve Silberman, a contributing editor for Wired magazine, with Ari Ne’eman, now the first openly autistic White House appointee in the country’s history. First, my blog is drawing more eyeballs than I thought. A friend of mine, who runs the blog site swirlspice.com, linked me to a MinnPost story via Twitter. MinnPost, in turn, linked the original story on the Wired website. I’m aware people do visit my site, since I can track how many visits are made in a window of time, but people I’m connected with are now just starting to send me links to news stories involving autism.

Second, Ne’eman and I appear to notice the same patterns in the treatment of autism in society, even though we’ve never met and likely lack parallels in our examinations of the disability. That doesn’t qualify one of us over the other, our paths merely lie in different directions.

The last time I talked about Ne’eman, he was still awaiting a Senate holdout blocking his confirmation. The hold, which can be placed anonymously, was later dropped, but not before controversy swelled within the autism community as divisions still exist on adapting versus curing autism spectrum disorder. Specifically, Ne’eman’s drawn flak because of his functionality, with critics suggesting he’d overlook the plights of more severe autistic people. Ne’man’s philosophy also ignited flames, with his belief that more resources should be devoted to helping autistic people adapt instead of finding a cause or cure to prevent the condition in future generations.

I won’t discuss much about the Q&A itself, since the only true intervention from the reporter is what questions were included in the story and how many quotes were included. However, Q&A sessions are no less credible than crafted stories in magazines and newspapers. A Q&A gives the audience an unfiltered discussion, where the reporter and viewer become listeners.

Wondering about what patterns him and I noticed? Ne’eman was asked about autism’s cultural shift from invisibility to media darling in the 21st century, and his response was that a special skill or astonishing success story was needed to gain representation in media (he discusses the other category of autism stories in other questions, where the picture is far more grim). His recommendation? Learning about autism doesn’t have to come from himself, Temple Grandin, or John Elder Robison (author of Look Me in the Eye), since so many exist in educational and workplace settings.

While I cannot measure individual experiences with autism outside of my own, reading the Q&A does highlight autism’s complexity and summarizes what may be a future focal point for journalists covering autism.

Autism “thunderstruck” by new controversy

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Think the vaccine debate is the only hot topic brewing in autism’s domain? If vaccinations were, they’re not alone anymore. Another lightning rod has surfaced in the form of 22-year-old Ari Ne’eman, who was nominated to the National Council on Disability by President Obama. Ne’eman’s nomination is currently on hold. If confirmed by the Senate, Ne’eman would be the first autistic person to serve on the council.

Sounds like a benchmark, right? Why Ne’eman was placed on hold may not be determined since holds can be issued anonymously (Obama’s seven other nominees to the council were confirmed earlier this month). What isn’t helping his situation is criticism he’s received by some autism advocates for his belief that autistic people should be accepted as a form of neurodiversity instead of being cured.

If you’re new to autism, it’s often referred to as a spectrum disorder because symptoms and severity can range. The common thread is impaired social interaction, but they could have anything from no verbal language to savant skills in communication. Ne’eman himself has Asperger’s, considered a high-functioning form but now a candidate for possible removal from the autism spectrum. Ne’eman is the founder of the Autistic Self-Advocacy Network and his belief mirrors a  growing movement that autism should be accommodated and not eradicated, citing the steps taken for people with physical disabilities, including ramps and bathroom stalls.

Ne’eman has spoken with the New York Times before, suggesting that pursuit of a cure, instead of improving quality of life, will provide few benefits to severely afflicted autistic people. Critics argue his philosophy only represents people who can communicate and take care of themselves. Autism Speaks, whose mission is to finance research for a cure, says Ne’eman fails to understand or sympathize those affected more severely than he is.

Autism Speaks’ rebuttal is hardly a surprise since Ne’eman himself criticized Autism Speaks over a fund-raising video last year. While Autism Speaks is the largest advocacy group in the country, their views are rarely met without criticism that began with the release of the Autism Every Day documentary 4 years ago. Critics accused the film of depicting autism as a disease that doomed the inflicted and anyone surrounding him or her. It’s worth noting that Autism Speaks doesn’t have anyone on their board with autism spectrum disorder.

I mentioned in my post about Wakefield’s ruling from the General Medical Council that the story crossed one controversy off a very long list, and the biggest squashing of the vaccine-autism link would open the door for another hot topic to swoop in. The vaccine debate still lingers, but a cure/no cure rivalry could be a candidate to take over the hot seat. The size of Autism Speaks allowed them to take the first swing at addressing the topic to a national audience when mainstream reports finally made the airwaves and newspapers about 5 years ago. After reading this article, I’m almost certain that journalists have gone away from the overview and moved to the more complex controversies surrounding it. I produced a documentary series on autism a few years ago as I was unsatisfied with the lack of digging from mainstream media, and it appears I won’t be digging alone anymore.

Regarding the story itself, Obama may have nominated him as a reflection of his attitude toward the treatment of different communities. Instead of a hard-line strategy that many consider a benchmark of the Bush years, Ne’eman’s beliefs and accomplishments in his own right could have persuaded the president to recruit someone who could speak for a group that rarely gets a chance to do so. Although a stretch, Ne’eman may mirror Obama himself: both have advocated for topics that aren’t necessarily popular or understood because they believe it’s the best way to make progress in the country. Whether they’re right or wrong is not my place to decide, I’m just discussing a theory on why Ne’eman was given the nomination.

The controversy of responding to a growing autistic population carries a few parallels with the hot buttons surrounding the gay/lesbian/bisexual community. In fact, you could replace autistic with gay in articles and chances are the story would still make sense. While I doubt we’ll see autistic marriage bans, the sense of panic over difference definitely carries over.

If Ne’eman is confirmed, and there’s nothing to suggest that won’t happen, pay attention to any statements released by him or his critics (primarily Autism Speaks). If both sides get big enough to dominate air time on cable news or print space on newspapers, the nomination could serve as an origin. Controversies are ugly, but Ne’eman could potentially be the springboard for other high-functioning autistic people to not only advocate their own stories, but perhaps pursue their dreams knowing that it’s truly possible for them to contribute to society in a meaningful way. I’m still waiting and attempting to create my chance 😛