Cannavo, Quigley Essay

According to recent studies, the prevalence of autism spectrum disorder (ASD) has risen significantly in the past two decades. Along with such a controversial, incurable, and mysterious disorder comes much speculation regarding the recent increase in diagnosable cases of ASD. From online blogs, to television news outlets, to government-released reports, our knowledge regarding the rise in autism is being managed to an exponential degree through language, tone, word choice, and information choices disclosed and excluded in such channels. In this portion of our research we will discuss the tactics in which online blogs, medical journals, newspapers, and commercials utilize knowledge management to sway others opinions and perspectives concerning the latest statistics of ASD cases and, more importantly, the motivations for these decisions regarding the reputation and personal benefit of these outlets.

In a Google search for blogs on autism, this popular search engine provides internet users with thousands of results. Blogs are an outlet for the ordinary person to share individual knowledge to the online community. Autism blogs tend to portray autism as an adventure, a joy, and a blessing rather than focus on the negative impacts on an individual or group of individual’s lives. Through managing each other’s knowledge in terms of first-hand accounts, those affected by ASD seek out others in similar situations to share stories and concerns. Virtual autistic community blogs such as The Autism Hub present their mission statement as “promot[ing] diversity and human rights, with ethics and reality as the core guiding principle; aspects include: empowerment/advocacy, acceptance, and a positive outlook” (The Autism Hub). They create within themselves a community where people understand and appreciate rather than sympathize and pity.

Technology has, in essence, become a manager of knowledge in the virtual autistic community. This online community comprises of a diverse geographic, ethnic, and economic group of members affected personally by autism spectrum disorder, alongside those who have no prior experience with or knowledge regarding the disorder. The Autism Hub goes as far as to categorize the posts of bloggers into titles of autistic blogger or family member to student/professional. The internet places autism on a global stage through the creation of its own online identity. Autism blogs cover a wide range of topics; these blogs tend to reach out to the families and friends of those with autism and the autistic individuals themselves to celebrate the lives of these people. Blogs on the popular website, The Autism Hub, range from “A Critical Look at Science in the Autism World” (http://interverbal.blogspot.com/2009/09/hub-and-ideas.html), to the entry directly below entitled, “My Meltdown” (http://blog.markfoster.name/2009/11/07/my-meltdown/). In this manner, blogs offer a sense of community and hope to those who otherwise feel isolated in their own world. So how is this community reacting in these blogs to the claims regarding the emerging medical studies of the increase in autism over the past few years?

In the About.com “Guide to Autism” blog by Lisa Jo Rudy (http://autism.about.com/b/), the mother of a son diagnosed with an autism spectrum disorder, Rudy challenges the validity of new research. The Centers for Disease Control and Prevention (CDC) reported an increase in cases of ASD from 1:150 to a shocking 1:91, affecting approximately 1% of the population (Rudy). Much skepticism of the studies performed by the CDC involves the survey’s qualifications for diagnosing autism. A child in the survey was considered to have ASD if the parent confirmed that “a doctor or other healthcare provider had ever said that the child had ASD” and if “the child currently had the condition” (Rudy). Therefore, the results of these surveys in which the ratio 1:91 children have autism indicates that this one child may have never received an actual medical diagnosis. Without the expertise of trained medical professionals, accurate information regarding ASD remains impossible to retrieve.

Rudy criticizes the CDC’s means of confirming a diagnosable case of autism, citing statements from the CDC themselves questioning the reliability of their own research results (Rudy). The controversy brought upon by these newly released statistics proposes the idea that more children do not actually have autism, but rather heightened awareness has altered society’s means of diagnosing the disorder. In essence, the more easily accessible the information regarding the symptoms of ASD, the more prevalent the cases. The development of this virtual autistic community simultaneously created an unexpected and often overlooked awareness redefining the diagnosis of autism.

Why, then, are parents more willing now than in previous years to accept the fact that although a doctor has never diagnosed their child, they have such a severe condition as autism? The answer lies in the informational outlet that changed the face of autism spectrum disorders for years to come; Web 2.0. Cyberspace opened its doors to the world in 1991 and coincidentally, public schools officially did not place autism on the special education list until 1992, one year after the rise of the internet in 1992 (Hensley). The reports of increased diagnoses in children declare the disorder has only been on the rise since the early 90’s, at approximately the same time period of the previous two events (Hensley). The internet has managed the knowledge of the public over the past eighteen years so vastly as to earn the credibility and reliability society once only placed in the hands of experts. Parents undoubtedly trust that if the results from the first three pages of a search about autism yield blogs of other parents whose children suffer from similar symptoms, the only plausible explanation would be that their child also has autism. They then continue to assess the diagnosis further by confirming it on more reliable “medical” websites such as WebMD. Society is slowly weaning out the need for and use of experts through this common use of the internet. Complications consequently arise in these self-diagnoses, such as the controversial and unclear statistics collected by the CDC. Members of the autistic community criticize the CDC for merely utilizing the means of diagnoses the majority of society has proven preferable. Blogs like Lisa Jo Rudy’s even confirm the most popular and, much of the time primary, reason for receiving a medical diagnosis of ADS is purely to gain federal funding to pay for medical needs and therapy (Rudy). Therefore, if a parent is not looking for federal funding, a medical diagnosis of an autism spectrum disorder is practically useless to them.

So why is society no longer turning to these experts for answers? The doctors, scientists, and researchers under the pressure of answering the questions concerning this mysterious, incurable disease falter beneath their lack of certainty in response mysteries flanking the climbing rates and causes of the disorder. Medical journals must comply with the daunting task of reporting the looming cynicism in regards to ASD that no one wishes to hear. Despite the reality that the truth is discouraging and may not be the information the autistic community wants to hear, medical journals continue to publish the gloomy, ambiguous facts.

But what happens when one medical journal’s “facts” are the result of a conflict of interest? One such example lies at the very heart of autism controversy, the effects of vaccines in regards to the growing prominence of ASD. Mainstream medical journals are reporting “a new study ‘disproving’ any link between autism and mercury-containing thimerosal in vaccines,” yet this article was published in a journal, the Archives of General Psychology, overflowing with advertisements from the drug companies that produce and promote these very vaccines (Adams). This medical journal stems from the American Medical Association, “a pill-pushing organization tarnished by a history of conspiracy against alternative medicine” (Adams). As trustworthy sources deem themselves unreliable, the issue at stake suffers greatly rather than benefitting from the reporting of these acclaimed experts. Medical journals waste time, money and energy capitalizing on personal benefit and reputation. This failure to abide by the unwritten moral pledge of the reporter to the reader leaves the knowledge of the public discriminatorily managed in regards to scientific research in autism. Fully aware of their high esteem as a resource of truthful information, medical journals take advantage of the reader and their trust in the judgment of the data in their articles for economic well-being.

As a result, the virtual autistic community has allowed individuals to free themselves from the corruption that too often follows the expert. The distant attitudes of medical journals leave those affected by autism resentful of such sources and, as a result, they backfire with criticism through personal blogs. Due to the fact that the scientific world is failing to provide any answers, more personal resources such as blogs focus on an intimate, individual representation of autism relevant to its readers. These ideas prove themselves accurate in blogs such as Lisa Jo Rudy’s previously mentioned autism blog. Rudy criticizes research journals first for their inadequate survey methods and, secondly, for their reliance on and throwing around of wish-washy, unverified answers (Rudy). Consequently, these online blogs transform into more of a support group, built for those in search of discovering solutions on their own, with aid from others in the same position due to the lack of scientific and medical support.

A concept James Surowiecki presents in his work The Wisdom of Crowds known as “contingent consent” fosters much of this thinking (Surowiecki, 138). Bloggers in the autistic community refer to one another for advice and manage each other’s knowledge. Parents, family members, and those with the disorder adapt many of the ideas presented in blogs as their own creating a general consensus of thinking in the online autism blogging community. If one blogger criticizes the medical community for their lack of participation in the fight against autism, other members of the autistic community feel compelled to also criticize medical research. The effects of conditional consent occur from criticisms of research in autism to participation in autism awareness groups such as the recently popularized group Autism Speaks.

In the same method of contingent consent, medical journals also take part in Surowiecki’s model. While there remain many proposed causes of autism spectrum disorder, medical journals and research focus on genetic autism research in a 20 to 1 ratio to environmental based autism (NIMH). Instead of breaking free from the generally accepted subjects of research, medical journals free ride off of other previously proposed ideas in a lazy attempt to prevent more work for them than necessary. Medical journals stubbornly refuse to change their ways even in response to much criticism from the autism community.

Much like medical journals and their stubbornness to report different research efforts, mainstream news media outlets fail to portray autism in an accurate light from all angles. A Google news search for autism results in over 5,000 news reports, but what type of articles are they? Looking over the previous month’s articles within the first four pages of results, there is a relatively even split between research and general news reports and the feel-good, emotionally-based stories. There are also a handful of celebrity-influenced stories that usually focus on some type of fundraising or awareness efforts. The public depends on news reports to educate and inform them on such topics, but with the media’s sensationalized stories and varying portrayals of the disease, it is difficult for readers to form a sound conclusion. Without a comprehensive understanding of ASD among the general public, the cruel cycle of misinformation will continue to flow and contribute to an increased level of prejudice.

Traditional media news outlets such as newspapers and television tend to heighten panic of ASD and focus primarily on statistics and the negative impacts of autism. Rarely do news articles tell the stories of those living with autism, how families cope on a daily basis, what happens to adults with ASD, or the possible future a child with ASD can have if the disease is diagnosed early. Yet, when the media does report these stories, they are often sensationalized and give examples of success stories, like professors and entrepreneurs with Aspergers or high functioning autism. Rarely do they portray those severely impaired who need constant care or the effects on families and parents of autistic children, who have a 75% divorce rate.

When the media is not focused on sensationalizing personal stories, they report on research and the lack of knowledge the medical community has about ASD, its causes, and its nonexistent cure. However, the scope of research reported is often quite different than what the medical community is actually performing. According to Medical News Today, 41% of scientific papers deal with brain and behavior research, however, only 11% of news stories in the United States, United Kingdom, and Canada report brain and behavior research (Medical). On the other hand, only 13% of scientific papers report on environmental triggers of ASD, while 48% of news stories deal with environmental causes, including MMR (measles, mumps, and rubella) vaccines. Dr. Judy Illes, associate professor of pediatrics and author, points out that although the media frequently coincided with scientific papers on the skepticism of the MMR vaccine evidence, the media lacked in their reporting because they did not “reflect the breadth of scientific research including the genetics, treatment, and epidemiology of autism” (Medical). These findings highlight the need for scientists to communicate with the public more about their work because media outlets instead often report research that can “result in action on the part of a reader, like a list of do’s and don’t to keep kids healthy.”

The most recent report on ASD comes from the journal Pediatrics, stating that 1 in 91 children and 1 in 58 boys have ASD. Boys are four times more likely than girls to be affected, and the overall numbers report a staggering 50% increase in affected children in the past 2 years. Articles reporting this study, such as the New York Times and the Los Angeles Times, are very statistical in their reporting and primarily deliver the bad news and do not mention any ongoing research for a cause or cure, increasing the sense of panic about this disease. For instance, the title of the LA Times article reads “Proportion of 8-year-olds diagnosed with autism is up 50% in 2 years, CDC says.” These types of titles could give the general public a sense of urgency if they do not read the actual article, which goes on to state that the study could reflect better and more frequent diagnosis of children and not necessarily an increase in the number of children affected. As Dr. Steven Goodman, an epidemiologist at Johns Hopkins Bloomberg School of Public Health, readily points out about the new statistics: "This has the tremendous potential to scare people. It is very unlikely that there has been an explosive increase in the way that has been portrayed in the media" (Tsouderos).

News media manages their audience’s information even in their physical placement of reports, printed and online. Because newspapers rely on its readers to attract advertisers, they position stories based on what their audience wants to hear, and advertisers pay according to their placement in relation to popular articles. The New York Times’ brief 237 word article on the new Pediatrics report can be found on the second to last page of the “Science Times” section of the October 6, 2009 issue. This placement communicates the level of importance deemed by the newspaper and its advertisers. The article, much like the LA Times’, is also very statistical, data-driven, and sticks with the convention of only presenting the bad news. It does not offer any hope and makes the report and issue more controversial, questioning the diagnosis procedure: “The next step scientifically is to see whether those diagnoses are being made accurately,” says Dr. Susan L. Hyman, a pediatrician at Golisano Children’s Hospital in Rochester (Carey). The NY Times article also questions the validity of the Pediatrics’ study, which consisted of telephone interviews with parents, because the survey included everything from severe autism to milder social struggles to “‘pervasive development disorder,’ a description given to many troubled children” (Carey).

Heated debate continues between many different autism communities about the research on genetic (brain and behavior) and environmental causes (vaccines) of ASD, and these controversies will not be resolved anytime soon. In a New York Times article review on a book about autism and vaccines, Dr. Nancy J. Minshew, a top autism expert and a neurologist at the University of Pittsburgh Medical Center, blames journalists for “creating a conspiracy where there was none” (McNeil). She continues to state that “by acting as if there were two legitimate sides to the autism debate, the media has fed on this — it’s great for ratings.” The autism community is highly aware of the media’s portrayal of the disease and are taking actions to provide proper information to the public in the form of commercials. Autism Speaks, the nation’s largest autism science and advocacy organization, uses the media to their advantage and takes the initiative to reach the public directly, instead of taking another avenue through reporters or journalists. The organization has aired several public service announcements over the past couple years to raise awareness and empower parents and communities to take action against ASD. The announcements use celebrities like Brian Williams, (http://206.252.155.61/media/d_200507_Brian_Williams-TMYK-112k.wmv), PGA golfer Ernie Els (http://www.youtube.com/watch?v=NEehPXnFp2E&feature=channel), and Tony Braxton (http://www.youtube.com/watch?v=omdo_Ud9i9U&feature=channel) to reach parents through their credibility and status. There are also ads targeting younger audiences as well. The popular boy band “The Jonas Brothers” promote an autism walk to raise awareness and fund research (http://www.youtube.com/watch?v=rseEpjBGRK8&feature=channel). Another ad targeted towards young children uses simple terms and child-friendly celebrities like Teletubbies to explain autism and how to treat children with autism (http://www.youtube.com/watch?v=4g5jtGqHJEw&feature=channel).

Another commercial comes in the form of a political advocacy ad dealing with health care reform and calls for Congress to take action against private insurers for discriminating against children with autism (http://www.youtube.com/watch?v=7rVX_nSLFtg). Autism Speaks and its ad again act as a direct link to the public for the evident need that is upon them. By doing so, their messages cannot be hindered by other issues, such as the controversy over ASD triggers and the realization that there is no cure in sight. These efforts by Autism Speaks and others in the ASD community seem to be effective as their voice is finally being heard—with an increased focus on health care in America and President Barack Obama’s recent $85 million in stimulus money for autism, ASD is receiving slightly more coverage on the real issues of research and funding.

As we continue our research in more media outlets, we hope to find more quantitative and qualitative evidence to support a general thesis regarding the management of knowledge through autism spectrum disorders. The future of those living with and affected by autism is dependent upon communication to the general public about this mysterious disease. The public must therefore be educated properly and made aware that the information they are receiving is being filtered and managed by mainstream media.

Works Cited

Carey, Bendict. “Childhood: Autism Diagnoses Rising, U.S. Reports.” The New York Times. http://www.nytimes.com/2009/10/06/health/research/06child.html?emc=eta1

Google.com

Hensley, Scott. "Autism Strikes 1 in 100 Kids, Parents Say." NPR Health Blog (2009): n. pag. Web. 03 Oct 2009. <http://www.npr.org/blogs/health/2009/10/autism_strikes_nearly_1_in_100.html>.
http://pediatrics.aappublications.org/cgi/content/abstract/peds.2009-1522v1?eaf

McNeil, Donald G. “Book is Rallying Resistance to the Antivaccine Crusade.” The New York Times. http://www.nytimes.com/2009/01/13/health/13auti.html

Medical News Today. “Media Coverage of Autism Differs Dramatically.” http://www.medicalnewstoday.com/articles/61956.php

Pediatrics. “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007.”

Rudy, Lisa Jo. "Autism Is at 1:100- or Is It?." About.com (2009): n. pag. Web. 03 Oct 2009. <http://autism.about.com/b/2009/10/05/autism-is-at-1100-or-is-it.htm>.

Rudy, Lisa Jo. "Got Autism? How do you know?." About.com (2009): n. pag. Web. 02 Oct 2009. <http://autism.about.com/b/2009/10/06/got-autism-how-do-you-know.htm>.

Skoyles, John. "Aetiology Of Autism. Neuroembryology And Prefrontal-Neocerebellum Disconnection." neurodiversity.com (2009): n. pag. Web. 04 Oct 2009. <http://users.globalnet.co.uk/~skoyles/autism2.html>.

Surowiecki, James. The Wisdom of Crowds. New York: Anchor Books, 2005. Print.

Tsouderos, Trine. Los Angeles Times. “Proportion of 8-year-olds diagnosed with autism is up 50% in 2 years, CDC says.” http://www.latimes.com/news/nationworld/nation/la-na- autism5-2009oct05,0,4836058.story

"Vaccines and the Autism Epidemic: Reviewing the Federal Government's Track Record and Charting a Course for the Future." House Committee of Government Reform (2002): n. pag. Web. 04 Oct 2009. <http://www.kaisernetwork.org/health_cast/hcast_index.cfm?display=detail&hc=734>.

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