The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘controversy

West coast no refuge for unvaccinated

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Last year, I explored a Frontline documentary on vaccinations, and the traveling crew visited a Washington city to hear from parents who opted out of vaccinations. The Seattle Times via the Associated Press published a spiritual follow-up that studies Washington kindergartners from the 2009-10 school year, and discovered that six percent of students were missing at least one vaccine that is required in virtually all other states. The most commonly skipped vaccine was chicken pox (a vaccine that could have saved me an inconvenience, I carry scars from my bout as a child).

The number of school children fully vaccinated has steadily declined in Washington since 1997. A state law enacted in July is aiming to close a loophole that allowed parents to avoid providing proof of vaccination at schools. Accordingly, diseases prevented by vaccines are also increasing, with over 600 cases of whooping cough reported in Washington last year, more than double the 2009 rate. Nothing has changed about the concerns of vaccines, with apprehensive individuals pointing to data from the National Vaccine Injury compensation showing an estimated $2 billion has been paid out in cases claiming problems associated with vaccines. Scientists counter that it’s hard to prove cause and effect with the millions of vaccinated individuals with no long-term health problems, but doubt remains with some parents arguing doctors can’t prove vaccinations didn’t influence an autism diagnosis.

The article is simply the latest chapter in the vaccine debate I’ve explored heavily on this blog, but the Washington saga underscores the shift in people not fully vaccinated from the economically disadvantaged to well-educated parents who do their own research, which isn’t necessarily conclusive or even unbiased. The Frontline episode, “The Vaccine War,” explained how celebrities and other notable names can drive beliefs even without scientific backing, with Jenny McCarthy’s views on autism making headlines a few years ago (her book details how she “rescued” her son from the disorder). Worth repeating, vaccines are so effective at stopping previously perilous diseases that many of them have resurfaced only recently as a result of decreasing immunization rates. Parents have more time to be “nit-picky,” which means more opportunities to develop emotionally charged theories that carry little scientific weight. However, with feelings and emotions usually a stronger bond in the human psyche than facts and figures, concerns about vaccine safety will likely continue to remain difficult, if not impossible, to immunize.

Gauging the tipping point is difficult to ascertain with regard to time and intervention, as Washington’s state law now requires parents to meet with medical providers and provide proof a consultation took place. I doubt anyone in the scientific community is wishing for an outbreak to convince doubters with potential implications to the public’s health and media coverage, but general reporting on the vaccine controversy is growing to a tired cycle of studies disproving a link and worried parents whose beliefs can interfere with knowledge. I’ll continue to analyze the relation given its prevalence in mainstream media, but a fresh avenue could be traveled by examining attempts to reach out to critics beyond rehashing the benefits to reporters seeking to fill space or time in the news circuit.

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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.

100 stories for autism surveyors

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Traffic to The Autistic Journalist has skyrocketed once more after I returned from my three-month hiatus, and thanks to your support and the constant stream of articles I find, you are currently reading my 100th post since I activated the site in January 2009. The journey of archiving and analyzing how journalists report on the autism spectrum has allowed me to examine autism and reference what I’m discussing instead of simply going off my own observations. Since my first post, this site has recorded more than 12,000 visits and two syndications with Autisable and Disability Resource Exchange. I’m grateful for this outreach so far, but I doubt they will be the only ways of spreading my message.

Speaking of messages, two surveys whose results were published in the May issue of Pediatrics and picked up by U.S. News and World Report found that 93 percent of parents who participated had or were going to get all recommended vaccines for their children, while 76 percent said they trusted their doctors a lot. However, 24 percent of respondents said they placed trust in what celebrities say about vaccinations, which segued to autism activist Jenny McCarthy, who is known among the autism community for her opposition to vaccinations despite numerous studies refuting a link and the official retraction of the study that initiated the controversy (some of those stories are featured on this very site).

Dr. Gary Freed, one study author who is also the director of the child health evaluation and research unit at the University of Michigan, cautioned giving too much credit to celebrities who may not share the same background as researchers do. Freed was quoted saying there is a danger in the media of putting up celebrities as experts for any topic they have an opinion on, even though they have no expertise in immunizations or infectious diseases.

The second survey highlights a second obstacle that was explored by PBS’ Frontline documentary on vaccinations last year. 22 percent of those respondents said they were concerned about their child receiving too many vaccinations and the potential for damage to a child’s immune system (some vaccines, including flu shots, will use dead cells of the virus for the body’s immune system to absorb, allowing cells to fight off active versions of those viruses). Freed said that even if parents feel uneasy about their child getting poked often and early, that shouldn’t dissuade the notion of staying on schedule with vaccinations since many diseases they protect can be lethal for children and cause outbreaks for everyone else; Minnesota has been fighting a measles outbreak in recent weeks.

Jenifer Goodwin, the reporter who published the U.S. News study, faced a difficult proposition by covering two studies based on survey questions. One can be tricky enough for the audience to consume, as many stories that report poll figures will throw out a lot of statistics. Goodwin found an effective way to include both by finding one of the study authors and a second researcher who specializes in pediatric care for infectious diseases to spell out what the numbers mean. Not all writers do this when they recap poll numbers. Goodwin used her lead to highlight the biggest finding from the surveys, the overwhelming majority of parents who will follow the recommended vaccination schedule for their children, and quickly tied that to the ongoing controversy of the vaccine-autism link.

Some readers will read the first few paragraphs and then skim through the rest of the story, which is why print writers often employ the strategy Goodwin executes in her piece: the inverted pyramid. The inverted pyramid promotes placing the most important details of a story first, then include relevant but less necessary data in later paragraphs. While the web and various forms of blogging means writers don’t have to be as rigid with the format, the inverted pyramid remains a common form of print journalism and won’t stop being taught in workshops and classes that teach the craft.

Regarding the surveys, my biggest curiosity was the story reporting women and Hispanics being more likely to trust celebrities of the 24 percent that said they trusted them for vaccine information. Women cover just over half of the population and will have many backgrounds in their family lineage, while Hispanics are a growing segment of the American population that doesn’t rule out men believing what celebrities have to say. To gauge why the two responded the way they did would require a psychological expertise I don’t have, but we do see women more often for autism stories than men when it comes to the personal experience. Even the article from my last post on Holly Robinson-Peete spent the entire duration on her efforts, even though she and her husband are both involved in autism awareness. I’ve heard anecdotal suggestions that women are more enticing for autism stories because of their increased likelihood to display more volatility with emotional output, while men continue to live with the assumption they must be “tough guys.” Nothing is linear, of course, and families, researches, and other caretakers familiar with autism are well aware that support isn’t limited to the female gender.

There is potential for a follow-up story with the Hispanic community and autism (which would require a more complete perspective than their belief in celebrities), but I doubt the same regarding women, since that would leave many stations and papers in a state of self-critical research, and they’re not keen to highlighting trends they either caused or promoted that may not be beneficial for journalism itself.

Goodwin’s ability to guide us through two polls and not overwhelm us with numbers allows readers to feed off its notes, and also continues to suggest that the public is either growing tired of the vaccine-autism debate when evidence is clearly one-sided, taking more initiative to learn about all facets of autism, or both. Autism may not exist without a controversy for several years, but signs suggest the most visible issue in the last five years is slowly fading.

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 advocates “Tea-d” off

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Courtesy MyNews4

Political season…the time when a few things grind to a halt as candidates compete fiercely with one another to gain or hang on to the very thing that millions lost in the recession: jobs. Autism is no stranger to the political realm, although debates have centered largely around the vaccination controversy. Not this time. Autism advocates and maternity groups were furious earlier this week, demanding an apology from Nevada GOP U.S. Senate candidate Sharron Angle. Endorsed by the Tea Party. A video surfaced in a rally last year where Angle argued against health care mandates in the state of Nevada, saying that “everything…is covered under autism.” The groups demanding an apology suggest Angle has extended those claims since, suggesting that families and individuals mislabel other symptoms as autism.

Personally speaking, I’m not one-sided, as I don’t believe one party with complete control of the presidency, House and Senate is always a good thing. Applying similar principles, Angle’s comments from the 2009 rally may not be totally misconstrued. Determining whether they were tact or appropriate is another matter and one I won’t discuss.

Angle’s claims are understandable when cross-examined with the specifics of autism, which are few and hard to find. While several biological tests are currently in the experimental stages, they remain years from widespread use and the condition is still diagnosed by behavioral observation, a process that many know by now isn’t foolproof. There are also a few scattered skeptics regarding who exactly is autistic, including kids who go on gluten-free diets and are supposedly cured, when medical experts, organizations and resources all suggest no cure is available. Autism’s range of severity is no secret either, with cases drawing parallels to the unique features of snowflakes. While no details are known about how many incorrect diagnoses are made, the possibility of one exists with current testing criteria.

Regarding the article, any juicy comments from politicians hit the web and news circuits faster than most people can read this sentence. The bulk of the story highlights a press event that appears to be little more than a rally. The speed of communication can be lethal if comments are made that are considered shocking enough to make the news, but this story barely makes it out of the Las Vegas area, and the video was posted by Angle’s political opponents from Nevada’s Democratic Party.

If shocking statements are made by a candidate, there’s a possibility that someone who works for the candidate’s opponent is behind the spark. The tactic is simply nature of political campaigns in the 21st century, and something news outlets will eat up if they see value.

Written by TheSportsBrain

September 29, 2010 at 10:25 pm

Vaccine plot thickens with new government study

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The timing of today’s biggest autism story is worth noting after last week’s vaccine court settlement. Many news sites are publishing a Centers for Disease Control study that found no evidence of thimerosal, a mercury-based preservative used in most vaccines until 2001, increasing the risk of a child developing autism. The study joins several others over the last decade that reached the same conclusion.

Specifically, the study found that kids who were exposed to high levels through their own vaccinations or their mothers while pregnant, did not have a higher chance of receiving an autism diagnosis. The research used data for 1,000 U.S. children born from 1994 to 1999, about as recent as they can go with thimerosal no longer used in childhood vaccinations outside of the flu shot.

The article provides what is now a familiar background, citing the now-discredited Wakefield study of 1998 that caused parents to refrain from giving measles, mumps and rubella vaccines to their children, leading to outbreaks of all three diseases. Reuters (the outlet I’m deciphering for this story) also included a quick recap of the condition, including the scientific theory that autism is influenced by genes and the range of severity the disability inflicts on its inhabitants.

The story itself resembles many I’ve read before that also reported no link between anything related to vaccinations and autism, and odds suggest more stories will appear as the debate continues. The study is perhaps the best antidote the government could get at this moment, with the publication of last week’s settlement where the government conceded that vaccinations aggravated a child’s underlying conditions. Although they’re under the same umbrella, one item to note is the two stories dealing with two different branches of government. One dealt with the Court of Federal Claims under the judicial branch, while this story focuses on the CDC, a federal agency under the Department of Health and Human Services. The nature of studies would also render any conspiracy accusations ineffective, since five years of data was mined and analyzed. However, the data used should clarify the lengthy process that goes into studies, preventing factual compromises of the conclusions presented upon publication.

While the PR twist is the juiciest element upon examining the story, Reuters’ decision to recap autism again is interesting. Measuring the intelligence and memory capacity of an entire country is nearly impossible, but with news articles of any subject easily accessible online through a Google News search, combined with the coverage through traditional means, the question now could be how long does the absorption process take with topics previously unheard of. Autism has and will continue to be a complex, fascinating example, with news coverage on the subject not common until last decade. Autism’s ambiguity could also be a factor; there aren’t enough parallels to create “stereotypes.” Because no clear signals are present, knowing if and when other people encounter autistic people is extremely difficult.

As the government and other medical experts continue attempting to calm fears about vaccinations potentially harming kids, I’ll be paying attention to how many more times articles include the classic “introduction” of autism and its effects, as that will be the biggest indicator of how much knowledge the public has on the disability.

Wakefield supporters refuse to sleep

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I was going to post solely on Dr. Andrew Wakefield getting banned from practicing medicine in his native Great Britain after his paper proposing a link between vaccinations and autism was discredited and retracted, but a more recent article in the Chicago Tribune suggests he has already taken notice.

Feeding off the strong support he still has (I discussed why people would still follow him even if his research was ruled dishonest when news of the ruling made its first appearance in the press), Wakefield stated that he planned to resume his research at a vaccination-choice rally at Grant Park in Chicago, in conjunction with a conference hosted by Generation Rescue. Wakefield plans to start a “virtual university” where he will design research programs to examine the causes of autism and other diseases. Rally supporters (a small crowd according to the article) claimed they were unfairly labeled as anti-vaccine folk. On the other side of the spectrum, over 200 health experts met in a downtown hotel to figure out how to increase vaccination rates, which dropped after Wakefield’s paper was published and led to measles outbreaks in the United States and Britain.

We do learn something new that puts a perspective on the vaccine debate. Resistance can be traced back to the 19th century, which means the issue may not be as modern for those who lack experience in the medical field as once thought. The closing paragraphs mirror the message transmitted in Frontline’s look at the issue: vaccines were effective at preventing diseases, shifting focus to the safety of vaccines themselves, despite the slim chance of immunization recipients developing an adverse reaction to them.

Another point of contention may be Wakefield’s view of autism as a disease that can be cured. Folks who believe autism can be reversed may be at odds with theories suggesting the condition is caused by a genetic malfunction, and that doesn’t factor the myriad of studies concluding no link between autism and vaccines, a point often beat to death by reporters when they report on the subject.

Wakefield’s speech and plan of action resemble the mindset of many who are directly criticized over their ethical or lawful shortcomings (search political scandals and you’ll find plenty among our elected officials). They often deny such accusations or continue to tout their beliefs. While a healthy amount of skepticism is necessary to ensure the answers are indeed correct, promoting an idea refuted by hard evidence suggests stubbornness may be at play. Stubborn refusal of the truth is often a weakness of human emotion.

The Wakefield coverage also suggests that we’re nowhere near wrapping up coverage of the controversy surrounding vaccines and autism. The continuing press is likely because no other theory is juicy or concrete enough to warrant publicity among media’s major players. Until then, journalists will often retreat to what’s popular in the present. Vaccine skeptics will likely remain unless a widespread outbreak of a preventable disease occurs, and the true loser may be the autism community as time and resources are spent on old wounds.