The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘New York Times

Autism no fraud, but controversial study declared false

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Autism’s biggest firestorm refuses to cede its flames, as The Associated Press reports an analysis of the now-discredited study linking vaccines to autism published by Andrew Wakefield was based on doctored information on how the children were involved.

Brian Deer, a British journalist who made the discovery, learned that five of the 12 children in Wakefield’s study had documented developmental problems prior to receiving an MMR vaccine, which Wakefield claimed was the cause of autism in children and led to panic among parents of autistic children. Deer also noticed that all cases were misrepresented after comparing data from the children’s medical records and their parents.

As you may have guessed, a huge reaction among the autism community has erupted following the report. Wakefield’s dishonesty ruling last year, from the General Medical Council, was the first bombshell that brought pause to the belief of a link between vaccines and autism. In fact, 2010 was a significant year in terms of addressing the controversy with vaccine safety. While the study is no longer considered credible, immunization rates for measles, mumps and rubella haven’t fully recovered from their lows of the late 1990s, and outbreaks of diseases once thought to be eradicated have cropped up where immunization rates decreased.

However, this scientific debate persists because of emotionally charged reactions from both sides as they attempt to one-up each other to prove their argument is more valid. Fear of the unknown remains a powerful catalyst as humans often worry about things not necessarily within their control, which is one reason why this debate remains autism’s spotlight controversy. Naturally, it’s a perfect story for reporters to follow up because its energy level remains high. I’ll discuss one story that gauges the reaction from supporters of Wakefield’s study tomorrow.

By the way, you’ve just read my first blog post of 2011. After taking a hiatus to focus on other assignments, I’ve returned to continue discussing autism in the news and what it means for the news. 2010 was a big year for the Autistic Journalist, where daily hits increased from 4 in 2009 to 20 in 2010. For you mathematicians, that’s a 400% increase. Yeah, not much, but increased syndication in 2010 helped spread the word about The Autistic Journalist, and I want to thank readers for their continued support. I’m no expert, but I will not rest in my goal to go beyond the surface in exploring autism and its news coverage. 2011 will be an even bigger ride than 2010.

Mind my eyes!

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The New York Times reported another facet of autism that will likely be added to parents/guardians who tremble in fear about what could happen to their autistic kids. Those who use swings as a calming force may be at risk from falling metal shavings that peel as the suspension apparatus wears. The paper cites a medical journal article where two boys were treated repeatedly for metallic fragments that got lodged in their eyes. Recommendations to solve the problem include giving children safety goggles for therapeutic swings.

Obviously, the matter isn’t laughable as anything that gets stuck inside someone’s eye can cause significant damage. In terms of New York Times coverage, Autism Awareness Month did little to fuel new stories for 2010. However, it’s not easy for the paper to find an autistic child whose eyes were lodged with metal fragments from swings since the city doesn’t have much breathing space for backyards; you have to head outside the city limits. Not much is given on the frequency of such incidents. One theory relates to their low awareness for danger; the last thing autistic kids are thinking about, when swinging to calm the senses, is the condition and integrity of the swing.

For the audience, the biggest concern with the story may be a parental overreaction to safeguard their kids. People are already scared enough, and who’s to say this doesn’t happen with “normal” kids as well.

Despite the knowledge caregivers would find important, the story isn’t a landmark article on the developments of autism. The news may encourage parents to find other forms of therapy, but I doubt sales of swings will drop significantly over metal shavings.

Written by TheSportsBrain

April 21, 2010 at 4:48 pm

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 😛

Act your age

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The New York Times reported a study released by the journal Autism Research earlier this week suggesting that older mothers are more likely to have an autistic child and older fathers also increase the risk when his partner is under 30.

The research was conducted on five million births in California during the 1990s, with 12,159 of those children receiving an autism diagnosis. Fathers 40 or older who had children with mothers 30 or younger increased the risk of having an autistic child by 59%.

The new study may challenge previous research that linked a higher rate of autism with advancing paternal age, but not with advancing maternal age. However, the authors said that alone doesn’t account for the sevenfold rise in autism cases in the 1990s.

Studies are notoriously long, tedious and often can’t account for every variable due to lack of resources, and even though the results may bring new answers for the causes of autism, most in the know about the disability are aware of the hasty increase of autism diagnoses in the last decade. However, since we’re only a month and a half into the new decade, it’s unlikely we’ll know about any changes that took place from 2000-2009 for some time. When published, studies will often note potential fallacies of the published findings and/or list the methods used to obtain them, so other studies on the same topic can use them as a reference. Studies have a similar structure to film and TV documentaries; they’re not meant to be an end-point to specific issues, but another piece to solve a very long puzzle.

One such drawback is the sample size. While over 12,000 California newborns were examined in the study, that leaves out 49 states. It’s safe to say autism increased in those states and there’s enough to theorize that similar increases regarding autism and parental age happened at other states, but at what levels?

The story isn’t getting much buzz outside The New York Times. Super Bowl XLIV is a likely culprit, with reports on its record-breaking ratings (passing the M*A*S*H* finale as the most-watched TV program in history). Another could involve the nature of media coverage itself. Local, national and 24-hour cable news often blitzkrieg major headlines throughout the day, but don’t offer many updates in a 24-hour period. Seeing the effects of swine flu saturating airwaves last spring, avian flu a few years ago, and the endless amount of information coming in after 9/11, we should consider ourselves lucky. In situations that threaten security, the reaction from the herd is often panic, and hyping the finding of the study may only add another fear about having a child.

I believe the lack of attention to the new study is caused more by other big news stories than a conscientious decision by news producers to avoid overloading consumers; we’ve seen little change from news outlets to suggest they’ll handle the news more intellectually this decade than they did in the previous one.

Written by TheSportsBrain

February 10, 2010 at 12:41 am

Elementary, my dear Aspie?

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Did Sir Arthur Conan Doyle have a leg up on the rest of us with his most famous literary character?

I have yet to see Sherlock Holmes, although I do intend on viewing it this week as I hear Robert Downey, Jr. helps carry the film from a so-so production to an above average one. I’m a sucker for actors who can make something out of material that is otherwise unimpressive.

Prior to the film’s release, Dr. Lisa Sanders examined the character penned by Sir Arthur Conan Doyle as she ponders the idea of Doyle capturing a psychiatric disorder long before medical experts detected it. Those of you training for Jeopardy! will be interested to know that Doyle trained as a physician at the University of Edinburgh, later transferring his medical knowledge to the many stories he wrote featuring Holmes and Watson.

Speculation of Holmes’ mind isn’t new, with fans and scholars suggesting he either has bipolar disorder or Asperger’s Syndrome. Even if Asperger’s loses its classification status, Sanders notes that the patterns of intense focus and social awkwardness generates parallels of parents whose children display the same qualities. The argument about Holmes and autism is based on a suggestion from the director of the autism program at the Yale Child Study Center. The director says the fundamental quality among all autism cases is “mind-blindness,” the inability to empathize what others feel or think, complicating the process of forming relationships. Sanders points to a few examples in “The Hound of the Baskervilles” to back up this point.

The article is primarily a speculative piece about the Holmes character. Given its publication date, the theory of writing the column to generate buzz for the movie is plausible, although no references to the film are made. An equally plausible theory is Sanders using the past to study the present, a fairly common tactic in the journey to understand autism. Although the correct answer will remain hidden from view, the possibility that some of our world’s historical figures, real or fictional, saw the world from a much different perspective can assist in demystifying the plagues of the present. At the very least, studying our history adds another example to add depth to a disability that, for many years, was interpreted solely through the eyes of Raymond Babbitt.

The Holmes method of solving mysteries is still very much alive as Sanders points out. Without Doyle’s contributions, present-day characters like Gregory House of House and Temperance Brennan of Bones (coincidentally, both FOX shows), with their parallels to Asperger’s Syndrome, may not be so fascinating. The Asperger/House connection was explored in an episode of the series.

The common thread among the characters, and one lesson that can absorbed through the article, is that we may all benefit by working with supposedly frustrating “bohemians.”

Written by TheSportsBrain

December 27, 2009 at 11:49 pm

Visualizing a singular identity

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Perhaps the most in-depth article I’ve read on autism since I began the blog. An article from the New York Times performs an extended look into the possibility of removing Asperger Syndrome and replacing it with simply autism spectrum disorder. A panel of 13 experts are evaluating autism and other neurological disorders for the new psychiatric diagnostic manual due in 2012. Their argument is that Asperger as a label is confusing and not very useful as psychiatrists shift from a “black and white” view of neurological disorders to a continuum with many levels of severity. Potential controversies are also discussed, as insurers, schools and researches all account for Asperger Syndrome. Australian psychologist Tony Attwood and Temple Grandin, America’s best-known autistic, also suggest keeping the term. Attwood’s concern is that removing Asperger Syndrome as a medical label may inhibit people on the spectrum from being assessed, due to the negative connotations of autism versus Asperger Syndrome.

This article highlights the controversies surrounding autism, from accounting for social setbacks and skills possessed by few others to constantly changing labels and the myriad of other health problems that often accompany autism (if only receding hair lines were included :-p ).

This is the first article to use percentages to explain how many kids have autism based on federal data. This is also the first article in some time that doesn’t provide the textbook definition of autism or Asperger Syndrome, but summarizes the disability in a way the mainstream can understand. I discussed the significance of both findings in a post I made in October reporting the government studies, suggesting the diagnosis rate was climbing. The New York Times may be considering the increase of awareness from the increase in autism stories and their reporters are electing not to define autism in the classic sense. The public is starting to catch on.

What this article also does is underscore the individuality within autism itself, an angle seldom seen in popular press. Most stories told through electronic media often group all autistic people together, not accounting for the abilities that astonish adults and bore playmates to tears. Autism Speaks’ Autism Every Day, released three years ago, is an example of lumping everyone to a single unit. With the proposed changes and almost certain debate forthcoming, we get to look into…GASP…differing opinions within the autism community. Some prefer keeping the Asperger name while others have lived comfortably with the autism label. Instead of a two-sided debate with a for and against side, the Times turns the story into a multi-perspective discussion with the scholarly medical side blending with the real-life side, a useful approach since the autism debate nearly matches autism itself in complexity.

On the surface, the article reports a very detailed discussion and debate over a possible exchange in terminology when diagnosing autism in kids and adults. Beyond that could be the beginning of the next stage of social discussions surrounding autism: self-identification. Detailed in modern media including True Blood and X-Men 3: The Last Stand, autistic people with enough cognitive abilities to process thoughts are now asking themselves who they are and who gets to decide how they live. This is no different from anyone else or any other group subjected to the prejudices of privilege and 20th century thinking, but the New York Times story is the first to profile what could be an autistic identity crisis.

Written by TheSportsBrain

November 4, 2009 at 11:44 pm