The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘survey

They call them “the wanderers”

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My journey to find a news story that would cover the perils of wandering drew parallels with the 1961 Dion hit of the same name. Unfortunately for parents, autistic kids who go “around, around, around” aren’t doing so to impress females. A study conducted by the Interactive Autism Network, using a national survey of 856 parents of autistic children, revealed around half of them wandered off at least once, sometimes gone long enough to cause alarm. Two-thirds of surveyors said their children had a “close call” with traffic while one-third said a child nearly drowned. A 58 percent majority cited wandering as the most stressful behavior displayed by an autistic child.

Delthia Ricks of Indiana newspaper The Republic interviewed a doctor who wasn’t involved with the survey but has communicated with families whose autistic kids elope. The study listed no primary reason for eloping as that wasn’t the study’s focus, but the story mentions “wanderlust,” avoidance or a specific destination as theories for taking off. Wandering can continue through adulthood, although the odds drop as children age. The biggest concern with autistics eloping is their lack of social awareness, including stranger-danger, increasing their vulnerability to harmful elements.

I detailed such a case of wandering in my third autism documentary, but the mystery was solved long before a major panic ensued. Most stories on studies hash out the numbers while adding quotes from a source on a press release or in a separately-conducted interview before validating those numbers in a follow-up story should a journalist take that action. For an autism community member, these findings may allow them to cite scientific evidence instead of anecdotal references, but the story is hardly surprising since wandering is a publicly-known issue. The focus of an autistic child is sometimes intense, to the point where they close off other forms of stimuli until the child’s task is complete. Drama can exponentially rise if a wandering child is non-verbal, reducing the likelihood of responding to audible signals.

The news environment itself adds a dramatic dash, with their preference to hype stories of danger, despair and fear of an unknown future to boost ratings and theatrics. The last two paragraphs of Ricks’ story fit with the overall theme without fabricating autism’s hazards, but when parents are exposed to this story, combined with other risks of childhood (which include eloping from non-autistic kids), the chances of buying the media’s perspective of the world is higher, even though stranger-danger is statistically less of a risk than harm from a known acquaintance. Autism can nullify the odds, but this story is a worthwhile lesson to absorb content presented to us without reacting impulsively.

Knowledge of autistic people eloping is common among the community, the wild card may be people who aren’t exposed to autism regularly. Don’t be surprised if Ricks or another reporter spells out the numbers through a story of experience with a family or caregiver watching an autistic child. Monitoring “child-proofing” stories for an expose on preventing autistic children from bolting may also prove fruitful in the short-term, as child safety is a frequently covered topic in news.

The information was public for some time through Google searches, but until The Republic picked up the story, all I could find were press releases. While PR does contain journalistic elements, they generally don’t follow the same format as professional journalists, and the purpose of this blog is detailing and dissecting mainstream news coverage of autism. Occasionally, I’ll post coverage outside of traditional newspapers and TV stations, but my theme will not bend from analyzing how mainstream media presents news and information on the topic of autism, which is why some time elapse before I got to this story.

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.

Autism diagnosis doesn’t equal divorce diagnosis

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Time to throw conventional wisdom out the window, at least according to a new study. The study’s author spoke about the findings, published in U.S. News and World Report, but the organization isn’t listed. Using data from a 2007 national survey of nearly 78,000 children from ages 3-17, researchers found that autistic children are just as likely to live with two married parents as everyone else. The numbers are by no means encouraging; the divorce rate of parents with autistic children was 64% versus 65% for non-autistic kids, but it may debunk the stat thrown around that suggested 80% of parents with autistic children would eventually split.

Studies are often tricky, since articles generally report the findings but rarely explain the methodology used to get there. The discussion and conclusion sections of a study also note flaws in their findings for future researchers to note when they conduct their own studies. However, given the high levels of stress that do come with an autistic child, parents may find some solace knowing that everyone else isn’t necessarily luckier. Relationships are tough to match from the start, but that’s another blog. However, the fact that something other than autistic kids is getting press time is noteworthy. The parental aspect plays a large role when stories on children are published, but the trials and tribulations of the parenting role is often ignored in mainstream coverage.

Spending more time on parents would be a fruitful topic to harvest for journalists. We know a lot about how kids with the disability interact with the world, but many parents still drill me when I bring up my condition. Perhaps it’s time I and fellow reporters change course and discover the treasure of information that can be found with parents who raise autistic kids.

Written by TheSportsBrain

May 19, 2010 at 6:09 pm

The ostriches are plentiful

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Jeff J. Mitchell, Getty Images

But their heads are well above the sand. A survey of over 1,500 parents conducted by the University of Michigan, in a story reported by the Associated Press, finds that 25% of those surveyed believe the now bogus connection between autism and vaccinations. However, the survey also found that 90% of respondents believe vaccinations are effective at preventing diseases in healthy children.

The survey was held last year, before the General Medical Council ruled Dr. Andrew Wakefield’s actions dishonest and unethical after a 1998 study suggested a link between autism and immunizations.

The article also reports doctors taking a tougher stance, asking parents who refuse vaccines to find another doctor. The survey is also a sign for doctors to design better ways to communicate how scientists reached a conclusion refuting vaccinations as a cause of autism to parents. Even Autism Speaks, not without its own controversies, encourages parents to vaccinate their children. The CDC reported measles outbreaks in five states in 2008 from unvaccinated school-age children.

The survey confirms what I speculated when word first broke out about Wakefield’s ruling and The Lancet‘s retraction of his study that spurred the hottest firestorm in the autism community. Correcting 12 years of false information will take just as long, if not longer, if history is any precedent (there was a 124-year waiting period before the United States granted women the right to vote and 189 years before the Civil Rights Act finally gave minorities equal rights under the law, although prejudice still exists). Surveys aren’t without faults, but the percentage of people believing the discredited theory is lower than I expected.

I’m up-to-date on all my vaccinations and the last time I checked, I’m still fully functional…wait a minute, I’m autistic. As soon as you find a cause for my case of autism spectrum disorder, send me an e-mail. Hopefully it will fall within my daily window of scheduled e-mail scans, which I maintain just as effectively as NBC does with its television audience 😀

What this also indicates is a lesson for anyone, including aspiring journalists when it comes to addressing controversies. Explain information as clearly as you can to your audience. You’ll be surprised at how many people believe untrue things simply because no one told them the right information. Communication is the reason print reporters, TV reporters and announcers often use simple words in their stories, because that saves us a boatload of time trying to define more complicated ones that you might see in scholarly work or the National Spelling Bee.

Written by TheSportsBrain

March 1, 2010 at 10:00 pm