The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘magazine

In face of ridicule, Wakefield fights for his theory

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Photo by Shaun Curry, Getty Images

The start to the 2011 calendar year was rocky for Andrew Wakefield, whose study was declared false by British journalist Brian Deer, who published several stories in the British Medical Journal highlighting Wakefield’s alleged false claims and unethical practices. Deer compared Wakefield, who lost his medical license after his study linking M.M.R. vaccines to autism was retracted last year from the medical journal Lancet, to a religious leader who occasionally uses the smoke and mirrors technique to goose the faith of his followers.

Deer’s investigation was one of many facets spilled out in an article by Susan Dominus for The New York Times Magazine, a longhand form of the country’s most recognizable newspaper. As with any form of magazine writing, the stories take on the form of novels and are more descriptive, too descriptive for me to summarize in shorthand form. That’s no reason to turn away though, as Dominus provides an insight on Wakefield no American reporter has offered before. Through her journey interviewing and shadowing Wakefield, we learn that Wakefield himself didn’t claim proof that M.M.R. vaccines were causing autism, but that didn’t stop his concerns from spreading worldwide the same way viruses spread through the body until its defense mechanisms can suppress it. If recent media coverage is any indication, Wakefield became one of the most reviled doctors of his generation, receiving blame for starting a panic that led to the resurgence of diseases long squashed by vaccinations.

Despite the wave of damning evidence which has led him to close himself professionally, he still draws followers, as 250 attended a discussion he conducted regarding his work. His supporters view him a hero when nearly everyone else paints him as a villain. Wakefield himself believes public health officials and pharmaceutical companies pay bloggers to post vicious material about him. Throughout the story, Dominus compliments Wakefield’s persuasive skills, even when the audience knows better. Wakefield continues to fight and promote his theory, with Dominus adding that the more he has sacrificed (he resigned from London’s Royal Free Hospital following his publicized concerns and now lives in Austin, Texas), the more he must believe in his theory, or all efforts will be rendered useless. Ironically, medical experts suggest aggressive studying of the M.M.R. vaccine following Wakefield’s 1998 media splash means the vaccine is one factor than can be ruled out in a disability still shrouded by mystery.

Dominus assures the readers that she isn’t necessarily siding in Wakefield’s camp, but she does give him an opportunity to present his case as other reporters who interview Wakefield quickly write him off as a discredited liar. By not falling into the dramatic trap that can detract storytelling from other outlets, readers of this story see why Wakefield continues his battle for reputation with his supporters waiting in the wings to back him up. We even learn a few personal anecdotes about his life before gaining his notorious status in Great Britain and most of the United States.

In order to obtain the behaviors, characteristics and traits Dominus lists regarding Wakefield, interviewing goes well beyond the simple press conference or brief one-on-one interview. Traveling with the source and immersing in the source’s comfort zone is common, and more relationship skills are needed to ensure you get the story requested in your assignment. In the case of Wakefield, encountering Dominus and her approach may have been more comforting since she offered a value other reporters decided to box away, even though she was no less neutral than shorthand writers covering the Wakefield saga. Ultimately, Dominus reveals the basis of Wakefield’s support comes from parents seeking answers who credit him or his associates for trying a possible solution, even if the strategy is cautioned by others (including casein and gluten-free diets, a media craze for a short time).

Magazine-style writing allows writers like Dominus to include more details and examine many subtopics of a story that traditional news articles can’t provide because of space or time constraints. Her observations may not remove Wakefield’s “villainous figure” in the eyes of the medical community, but just as the Marvel Comics movies emphasize human elements within their villains, Dominus’ story leaves Wakefield less clear-cut than previous mainstream glimpses portrayed him.

Autistics can pursue relationships like anyone else

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I had a long chat with a friend and colleague who’s currently overseas, and we discussed blogging for some time during our three-hour online conversation. Along the way, she mentioned coming across a magazine article about an autistic couple, but couldn’t remember the name.

Here’s where the journalist inside me kicked in. I did some quick research, and discovered the magazine was Glamour and the article was published in February 2009. The story was picked up by ABC’s Good Morning America, briefly summarizing the detailed descriptions from Lynn Harris, the reporter who wrote Glamour‘s story. Usually, I don’t come across magazine articles, but their style of journalism differs from television and the newspapers. Magazine reporters are no less skilled than their “daily” cousins, but their storytelling more closely resembles fictional novels. That doesn’t mean their stories are no less real.

Just like fiction, Harris gives us a beginning, middle and end to the relationship between David Hamrick and Lindsey Nebeker, profiling how they manage to stay together when many write off autistics seeking relationships as impossible. Both require separate bedrooms and rarely speak to each other at home or on the phone, as neither are comfortable with “small talk.” Although mass media and conventional wisdom describe autistics as loners, Harris reports many autistic adults aware of their shortcoming know what they’re missing out on and hope to find love. However, many prefer to seek out partners electronically, generally through social networking websites. David and Lindsey met in person via an autism conference, and Harris uses their meeting to transition from their tumultuous childhoods to adapting their needs while living together. To avoid sensory overload, they discussed every last detail to make living as roommates successful, even down to light bulb preference.

While planning every step of joining their lives in one place sounds like material written for the character of Sheldon Cooper on The Big Bang Theory (Sheldon has Leonard sign a roommate agreement which lists every possible situation the two could face as scientific living mates), David and Lindsey formed a bond and defied standard expectations of autistic people. In fact, a speech-language pathologist who knows the couple said other adults could learn a page from their playbook: both speak their minds clearly and directly, with no expectation of mind reading.

As a fellow ponderer about my chances at a relationship (if you’re curious, I’m straight, but this applies to anyone on the spectrum and should not be disregarded because of orientation), reading this two-year-old story left me thinking why this sub-topic of the autism spectrum is generally ignored by other forms of journalism. A newspaper or television reporter thrives at their ability to tell a complete story in a small amount of space and would scoff at the excuse of relationships being too complex for an audience with the attention span of a goldfish. While I could theorize for eternity, the profile story provides insights to answer the many fears parents have about the future of their autistic children.

Harris doesn’t waste time explaining the supposed deficiencies of autistic people, she details how both of her subjects lived with the disability and what impact it had on their history of relationships. Harris indirectly tells worriers to set aside their concerns, and perhaps a few tips for others on the spectrum eager to break down what is perhaps the largest communication barrier for autism. She also points out a few advantages of having a couple not feeling compelled to follow the conventional rituals of love. Harris fulfills her role as a journalist by giving her audience ideas they likely would not have thought of had the story never been published.

I could not find a follow-up or update on the couple in my research, but regardless of their fate, Harris’ role as reporter and storyteller highlights how much mentally disabled people have in common with the rest of the world, even if their behaviors place them on the “outside.” With the number of autistic adults increasing (1.5 million adults expected by 2016), Harris’ article will likely be the first of several autistic relationship stories as the uncomprehending public tries to understand what the deal is with their autistic peers.

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.