The Autistic Journalist

Using words to explain the mind

Archive for the ‘causes’ Category

West coast no refuge for unvaccinated

with one comment

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.

In face of ridicule, Wakefield fights for his theory

with one comment

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.

Seizing a link between autism and epilepsy

with one comment

A new study published in the May issue of Epilepsia shines more light on the link between autism and epilepsy. The findings were picked up by multiple media outlets, including WebMD and U.S. News and World Report, where health reporter Jenifer Goodwin once again broke down the results. Researchers who looked at records of 127 patients aged 3 to 49 who were autistic and had at least one seizure over a 20-year period at the NYU Comprehensive Epilepsy Center in New York City. They found 34 percent of those patients had treatment-resistant epilepsy, meaning seizures continued despite taking medication. 28 percent were seizure-free after treatment and the remaining 38 percent could not be categorized because there wasn’t enough information to determine if their seizures were treatment-resistant or not. The average age of the first seizure in treatment-resistant epileptics was also significantly younger than those whose seizures were treatable (6 for TRE patients versus 11 for patients without TRE). Autistic TRE patients were also more likely to suffer impairments from autism spectrum disorder, as 54 percent of TRE patients had motor skills delays versus 35 percent for those with treatable epilepsy. Autistics with TRE were also more likely to experience developmental regression, which is sometimes noted among parents or other observers following their autistic children. The study’s author, Dr. Orrin Devinsky of the NYU Langone School of Medicine and director of the NYU Comprehensive Epilepsy Center, suggested autistic children may need screening for epilepsy in order to learn more about the connection between the two conditions.

Goodwin has been busy making sense out of study numbers the last couple days. Unlike her last story about a survey of parents on vaccinations and their trust with different sources, Goodwin uses more figures in the autism/epilepsy study to highlight patterns suggesting epilepsy may be more common and severe when it targets autistic people. For those of you wondering why the study sample is small, recall that autism itself is still statistically rare and some people who may be on the spectrum may not have an official diagnosis. Likewise, the number of epileptics in the world is less than one percent, meaning the statistical odds of encountering an autistic with epilepsy are slim. The results of Devinsky’s study will likely spur more investigations on the link between epilepsy and autism if none weren’t already underway, paving the way for more insights on autism and epilepsy or perhaps presenting other information that may not agree with the study Goodwin reports about.

Remember the inverted pyramid I’ve been talking about for the last few posts? It’s hard to miss in this story, with the first piece of data highlighting the percentage of autistics with TRE, then going into other data relating to autism spectrum disorder, then tying the study with the Journal of Child Neurology publication suggesting epilepsy is more prevalent with autistics than previously thought. She does grab a few quotes from Devinsky, the study’s author, but most of the story spells out the study results. That technique is common with stories on studies as reporters follow their deadlines and, depending on the location or mission plan of the news organization involved, finding the human interest source is hard to find with the low odds of a person diagnosed with both autism and epilepsy.

I’m not an epileptic, but I have read about autistic children and adults suffering from seizures in my observation of autism articles and videos. Neither autism or epilepsy may be curable, and the study only begins to excavate a relatively unexplored area of the autism spectrum. With autistics already facing prospects of sensory overload on a daily basis, making the leap to seizures isn’t a stretch. Seeing more stories linking autism and epilepsy should be expected in future media coverage, but knowing when more reports will file in will be a harder task.

Vaccine plot thickens with new government study

with one comment

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.

Act your age

leave a comment »

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