Archive for the ‘science’ Category
A story picked up by several news outlets, including Reuters and ABC News (whose version I’m critiquing in this post), reports results of a small study published in the Journal of the American Medical Association that suggest autistic children have heavier brains and an overflow of brain cells called neurons.
The study is crucial because it presents the first exhibit of hard evidence of brain development veering off course for autistic children. Previous research showed that autistic children have larger heads and brains, with key regions that develop communication overgrown.
The study, using brains of 13 boys that were donated for scientific study after their deaths, discovered that brains of autistic children have 67 percent more neurons in the prefrontal cortex than non-autistic brains. The prefrontal cortex is linked to emotional, social and communication processing. The study’s lead author notes how surprising the finding was, also suggesting the abnormal development occurs in the prenatal stages as neurons aren’t generated in the prefrontal cortex after birth. Autistic brains also weighed 17.5 percent more than non-autistic brains.
While a future avenue could be explored in the research to find a cause, many point out the findings are preliminary and don’t apply to children and families currently dealing with autism. There is also no way to analyze brain tissue of living children.
The small sample size and lack of immediate impact may discourage some readers upon encountering this story. However, the findings are notable with several major outlets offering their version of the results published in the Journal of the American Medical Association. Although not new, the story does reveal through autism brain research that a physical characteristic that could possibly signal the condition exists, but not every person with a larger-than-average head will automatically develop the disability.
As with most study findings, extrapolating the results to a form that fits mainstream journalism remains simple, yet difficult. When combining the small number of brains studied with the lack of any immediate significance for the autism community, the challenge for reporters is seeking a relevant development for a scientific breakthrough. In this case, Gann points out that discovering that an abnormal development occurs before birth could lead to improved screening efforts in the future.
Another possible avenue that could be investigated with the knowledge of this study are what effects larger, heavier brains with more neurons could have on autistic people. Several stories on this blog and general knowledge will highlight the untapped gifts of the autism spectrum, including superior memory skills and focus. This is by no means a suggestion that larger brains equal smarter people, but considering the astonishment from the public when autistic people demonstrate skills with general knowledge, but a plethora of stories relating to autism and the brain could be found should this study lead to more examinations.
For now, we’ll have to settle for current methods of diagnosis as science always approaches its studies with a methodical attitude.
Erin Allday of the San Francisco Chronicle filed an article this weekend reporting a Stanford University research project suggesting autistic children have a distinctive topography within their brains, based on data obtained from brain scans of 24 autistic children between ages 8 and 18 when compared to scans of 24 non-autistic children. Unlike previous studies that analyzed the overall volume of the brain, where it was found that autistic children generally have larger than average brains, but the information wasn’t refined enough to be useful in diagnosing or treating the disorder, the Stanford study sectioned brain scans into tiny cubes and compared the size and structure through computer analysis. What they found was a pattern of organization in regions of the brain affecting communication and self-awareness particular to autistic children (communication and awareness are hallmark facets that autism affects).
The brain maps applied to 80 to 90 percent of autistic children, and the research pinpoints a potential bio-marker should the maps be replicated in a larger group of children. While the research is years away from application in the real world, coupled with questions about the method’s validity in screening children, the goal is providing refined treatments and clearer understanding of autism’s impact on a vital organ. The research was published online in the journal Biological Psychiatry.
Numerous studies and endless research attempts to find a biological indicator for autism spectrum disorder will continue as long as the cause of the condition remains unknown. On this blog, I’ve covered urine tests and studies on genetic proteins as potential signs to determine whether or not a person fits the autism spectrum. The explorations of so many subjects aren’t all that different from “old wife’s tales” of treating various conditions. When there’s a lack of concrete indicators for a disorder or disease, researchers task themselves to discovering at least one answer. Throughout the quest, numerous possibilities and theories emerge until further research either eliminates them or creates new support to continue investigating a certain topic. Unfortunately, the process is agonizingly long and often ignored by a mainstream audience thirsting for instant gratification, and that’s one reason why stories I cover on biological research often mentions such studies are years away from widespread relevance.
Another reason? Small sample sizes. In order to determine whether a theory is potentially correct or not while avoiding over-exerting resources, autism studies will generally use a localized test group that rarely breaks four figures. This story is one example of how quickly patterns and similarities can be found among people with a particular condition, and that itself is progress compared to scientific observations of autism 20 years ago.
Allday goes through the usual angles in covering this story, explaining autism’s rapid growth while a solution to finding the cause continues. I’ve mentioned before that stories on studies are difficult to provide detailed information because what is published is usually an early step of testing a hypothesis. Allday tempers any reader who may spout that a bio-sign was found by uncovering the unknown usefulness of the research itself. Stories like hers will continue to be published to newspapers as a “mainstream translation” of what is disseminated by journals, even though answers lie far beyond. However, when a biological cause is found, reporters will hopefully have at least one story of their own to reference.
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.
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.
In a study published in the journal Nature and subsequently reported by Robert Langreth of Bloomberg News, Stanford University researchers found that stimulating brain cells with light in mice caused autism-like symptoms.
Scientists implanted light-sensitive proteins into parts of the brain linked with social behavior, then activated them with blue lasers that were routed using fiber-optic cables. The mice subsequently didn’t socialize with other animals. When using a laser to activate cells inhibiting brain activity, the social behavior was partly restored.
The findings provide evidence to the theory that autism and other brain disorders may be caused by brain circuits oversensitive to stimulation, as the balance between neurons that spur signaling when excited and calming down activity when excited may be disrupted. The vice president of translational research at Autism Speaks predicted the laser method in this study could be revolutionary in detecting brain disorders on a molecular basis, but possible therapies based on lasers are far off for now.
Langreth’s word choice could spark an uproar among the autism community, as he refers to autism as a disease in the opening paragraph. Many involved in the autism community can be testy when others equate autism to a disease, a mindset that forms the foundation of criticism for groups like Autism Speaks (and subsequently explain the optimism expressed by the Autism Speaks member quoted in the story). The reason for such animosity is the belief that linking autism as a disease suggests the condition can and should be cured, when several on the spectrum have no qualms sharing their quirk. For the rest of the story, Langreth uses the word disorders to term autism and other mental conditions believed to be associated with the brain. That doesn’t mean he instantly recognized how word selection could generate controversy, but he believed the two were synonymous for the story. Reporters will often employ synonyms when their articles primarily emphasize one subject, as too much repetition can lose the attention of readers or suggest that a journalist’s vocabulary isn’t strong.
The study itself provides another avenue of exploration to find the cause of autism, with researchers suggesting the findings could lead to development of drugs or devices that calm or shield parts of the brain. Despite the similarities of brain configuration in animals, humans do have larger, more complex brains than mice do, and testing the study on humans is no less than necessary to validate the findings discovered by testing mice. While no repercussions were listed, the potential for side effects exists as the study explored the impact of altering brain activity. Don’t worry, this isn’t a secret plot to control life forms for world domination, but it’s more reasonable to believe this study is only a start far from its endpoint.
Because more work is needed to examine this theory, there were few sources quoted for the article, as Langreth interviewed a senior author by telephone and the Autism Speaks representative. Most stories on studies will either conduct an interview or transplant a press release by a head researcher, as other participants would likely give similar responses, creating redundancy in the story. Although no outcry exists over the study or word choice in the story, journalists may need to exercise caution with approaching autism, or even give a story on concerns over imagery associated with autism. The population is a fraction of the United States total, but the community is certainly keeping watch.
In another story I read in May and stored in my bookmarks, the Journal of Autism and Developmental Disorders published a study led by Simon Baron-Cohen (the cousin of actor Sacha Baron-Cohen) found that female-to-male transgender people have more autistic traits than heterosexual men or women, and also more than male-to-female transgender people. The news magazine Time picked up the story, and is the featured link in this post.
In fact, female-to-male transgender people outscored all but those with Asperger’s diagnoses on the Autism Spectrum Quotient, a scale developed by Baron-Cohen himself.
The study may fit with a theory Baron-Cohen has on people with autism exhibiting an “extreme male” brain, whose style of thinking favors “systemizing,” focusing on predictable patterns found in area like mathematics and mechanical devices (including the devices I’m using to write this post). This contrasts with “empathizing,” or understanding the emotions of others.
The difference is notable because Baron-Cohen and his colleagues recently discovered that giving testosterone to women decreased their ability to empathize, especially with women whose bodies were exposed to higher levels of testosterone in utero. However, because transmen in the study had already changed gender, the study could not reveal if autistic traits were a result of increased hormones or if they led the desire to change gender in the first place. What Baron-Cohen did say is understanding these kinds of connections can lead to better care for people with both conditions.
I must admit I know very few transgender people, having met one at a social justice retreat I attended four years ago in college, so I cannot speak personally on this subject. Maia Szalavitz was in charge of writing the story, mostly summarizing what was found in the study, but included some quotes from Baron-Cohen and a co-author who identifies as a transwoman. This isn’t your “usual” study reporting a rise in autism rates or even an indiscriminate cause; gender identity itself isn’t understood well with most of the population comfortable in their original bodies, not necessarily thinking about emotional challenges endured by those who don’t subscribe to their original gender. We’ve heard of tomboys, but there is a difference between “playing with the boys” and considering a transition to one.
Szalavitz doesn’t stray too far off the typical route journalists take when reporting studies, as finding sources willing to speak about the story would be rare given the subject matter. However, a curiosity exists on how other transmen would respond to the study. Baron-Cohen is among the most respected autism researchers, although Americans are more likely to recognize his thespian cousin (both Baron-Cohens are British). Simon’s theories haven’t been heavily debunked, nor has he been involved in controversy over his research methods, so studies he authors carry noticeable weight for journalists. Even if other transmen had never heard of Simon Baron-Cohen, getting a few quotes would be beneficial regardless of their opinion. Those who agree with his findings would presents reporters a story to help relate the material to readers, and those who disagree would highlight the complicated area of gender identity.
Now, this doesn’t mean females on the autism spectrum will automatically wish to become males. Even women exposed to more testosterone aren’t confined to a linear path of transforming to men. Szavalitz simply reveals another element with much exploration to be done through the reporting of Simon Baron-Cohen’s study. Future coverage is difficult to predict with the social stigma faced by the GLBT community combined with the mystery of the autism spectrum, other than a reinforcement of the non-linear nature of gender identity and mental disability.
As Andrew Wakefield continues to press forward with the vaccine link controversy (which is now being compared to other political debates where opponents repeatedly deny what almost all research suggests), the battle to address the autism spectrum in children found another metaphorical maze in Maryland. In a story originally published by The Baltimore Sun and syndicated by Los Angeles Times, a Maryland doctor sought to regain his medical license after suspension by the Maryland Board of Physicians. The doctor, Mark Geier, uses an alternative form of autism treatment with no scientific backing, injecting patients with Lupron, a drug approved to treat prostate cancer in men and endometriosis in women.
Geier believes testosterone is elevated in autistic children (and a study I discussed in my blitzkrieg of posts last month concurs with his opinion) and worsens the vaccine-related mercury toxicity they believe is causing autism in children, which is why he uses Lupron, as the drug suppresses testosterone production. However, the Maryland Board of Physicians reported that Geier placed children at risk with improper diagnoses and misrepresenting his credentials.
Geier’s branch is small in the story’s “tree.” Frank D. Roylance and Meredith Cohn, the writers who penned this story, summarize a point previously covered in mainstream press coverage but quantify what is known inside the autism community: the slow pace of identifying causes and effective treatments for autism lead to a proliferation of unproven treatments that grow wildly in popularity (the gluten and casein-free diet is one example). 38,000 families participating in a database at the Kennedy Krieger Institute in Baltimore have reported 381 different treatments. Families use five treatments simultaneously on average, spending around $500 per treatment. Do the math, and that’s $2,500 a month and $30,000 annually. Compounding the problem, a source from Kennedy Krieger’s Interactive Autism Network says only 10 percent of autistic children are enrolled at IAN or other research studies.
Roylance and Cohn highlight the low percentage by including three parent perspectives. We hear from Alison Singer, who was featured in Autism Speaks’ Autism Every Day and is co-founder of the Autism Science Foundation. While she tried several alternative treatments for her autistic daughter, she now advocates any new treatment should seek for a scientific study. Other mothers shared their experience with alternative treatments, and ultimately refused some because they lacked scientific evidence.
Despite the small percentage of autistic children enrolled in research studies, data from the IAN project is helping identify widely-used therapies so they can be subjected to scientific testing. Although science is not always accepted (the vaccine controversy still burns despite a mountain of evidence disproving a link), finding treatments proven to work can reduce the likelihood of parents making irrational decisions about their autistic children. Based on Kennedy Krieger’s data, a lot of irrationality exists. With families giving their children an average of five treatments for autism simultaneously, even if those treatments mitigate the symptoms of autism spectrum disorder, there’s no way to decipher which treatment actually works. With the money and time invested in so many treatments without scientific backing, little discussion is needed to explain why researching treatments should be a priority.
As the Kennedy Krieger source states, telling parents not to pursue any interventions without scientific support is impractical. Instead, the goal is encouraging families to avoid rash decisions that lead to children receiving a multitude of treatments. Emotional responses are road blocks to such a strategy, and Roylance and Cohn use their sources to explain why logic is sometimes discarded: vulnerability is high when parents first learn of an autism diagnosis. Since most parents will instinctively fight for their child’s success, and many lack an understanding of autism when they first hear of the disability, their susceptibility to doctors claiming to have a solution increases.
Geier’s treatment and recent suspension were subjects of recent stories, as two links appear as related articles to the investigative story filed by Roylance and Cohn. Using people like Geier as a springboard to a deeper story is a commonly-used tactic when resources and news editors allow reporters to execute the strategy. Treatments for autism are ripe subjects for story exploration because supposed techniques have exponentially increased. Most individual treatments without scientific evidence aren’t usually covered in mainstream news. Even if a treatment allegedly works on an autistic child, that technique can only represent a theory, not fact. The lack of scientific proof in alternative interventions can leave reporters in a precarious position with an autism community eager for awareness. However, Geier’s recent coverage opened the door to this realm of the autism spectrum while allowing Roylance and Cohn to filter the story and not create an impression of advocating alternative therapies themselves. Thanks to their reporting, we learn why Geier and other doctors can gain popular support: many parents of autistic children are rarely at the forefront of finding answers. Explaining why few parents involve their children in research studies is difficult, outside of simple impatience, but the low percentage of children in research studies should not be attributed to laziness.
Roylance and Cohn don’t suffer from laziness either. Readers unfamiliar with Geier are briefed on why he’s in the news, and they use parental perspectives to validate the analysis presented by Kennedy Krieger sources on the proliferation of autism treatments. Readers on top of autism coverage also gain a new perspective from the parental point of view. While emotional volatility is almost a guarantee for parents who learn of their child’s autism diagnosis for the first time, that mental state is transferred to research, regardless of what choice is made with alternative treatments. Roylance and Cohn could also open another door by highlighting the lack of involvement of autistic children in research of treatments. They didn’t specifically list how to enroll in research studies, but other reporters could piggyback on that subplot.
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.
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.
The Journal of Child Neurology published results from research on donated brain tissue from the Autism Speaks Autism Tissue program. The study found that people with both autism and epilepsy had a higher death rate than those with autism alone. 39 percent of donors to the tissue program had epilepsy, higher than the estimated rate of epilepsy in the general autism population. The study authors also examined data from the California State Department of Developmental Services, and found that people with both conditions have an 800 percent higher death rate than those with autism alone. A neurologist and member of the Autism Speaks Scientific Advisory Council suggested that both the autism and epilepsy communities should be motivated by this information to increase understanding of common risk factors and mechanisms of both conditions. The story, while short, has been picked up by multiple news outlets and blogs based on a Google news search I conducted.
The most glaring piece of information that must be examined is the 800 percent gap in the death of rate of autistics and autistics with epilepsy. While that may sound alarming, news outlets and study publishers will often relay statistics in that format as a means of generating attention. That doesn’t mean the information is false, but such margins can still be dramatized (another way news writers will dramatize such a stat is saying “eight times as likely”). When it comes to death rates, the overall percentage can never go beyond 100 for any particular category (and all living organisms eventually die). Unfortunately, not enough constants are given in any news article on this story for me to make a statistic that is less misleading. We don’t know what the death rate means, but based on the data presented by California’s Department of Developmental Services, we can make an educated guess that the death rate in this study refers to a specific point in the lifespan, and that the death rate is relatively low.
In fact, to obtain 100 percent using a multiplier of 800, the death rate of people with autism alone could be no more than .125, an eighth of one percent. It’s safe to say both figures are far lower than that with what I can deduce based on the information presented. In other words, there’s little statistical evidence to be highly alarmed by these findings because news articles did not provide any base percentages to work with. While that would certainly kill a story’s emotional impact, it would also kill any chance the story could be interpreted as a cause for panic. To add mathematical insult to injury, we’re not given the estimate of epilepsy overlapping with autism from the Autism Speaks tissue donation program.
I do not know any autistic people with epilepsy, but a colleague of mine did suffer from an epileptic episode in college. As the two of us live with the experiences of our respective conditions, it can be difficult when stories like this surface and leave out a few minor details that wouldn’t take much time to procure. Either reporters didn’t bother to review the study carefully, or the study itself did not include any base numbers in its findings. While deadlines and space are always the bane of reporters, one task that’s prided on is the ability to provide information so the audience doesn’t have to spend time or resources doing the same.
However, this may also serve a lesson on learning common mathematical functions. Journalists have an old adage about running away from math because that skill isn’t needed for all stories, but crunching numbers is valuable to put stats in perspective, which this story lacks. Calculus isn’t required, but it won’t hurt you to convert numbers into percentages, fractions, averages and so forth.