The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘USA Today

I’m pregnant with an autistic child

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Obviously, that statement is far away from entering the lexicon of childbirth, and unless I’m asked to re-enact a Cosby Show episode where Bill dreams most of the show’s male characters are pregnant (he gave birth to a two-liter bottle of Sunkist), I’ll be physically unable to claim such a thing.

However, health reporter Jenifer Goodwin returns to decipher more studies, with the story stripped in several outlets, including USA Today. Four studies are dissected by Goodwin and the findings may reveal clues on the likelihood of giving birth to an autistic child. One study reveals that catching a fever during pregnancy could increase the risk of autism in children. Another study suggests mothers who have diabetes, high blood pressure, or obesity may also carry an increased risk of autism in their offspring. Three studies examined data from 1,000 kids participating in the Childhood Autism Risks and Genetic Environment study, whose acronym is shortened to CHARGE.

In a weighted analysis, the first study suggesting a relation between fever and autism reported that mothers of autistic children were twice as likely to report a fever during pregnancy than mothers of children without autism. Risks were highest when mothers reported a fever during the second trimester of pregnancy. Researchers behind the study those findings as preliminary and no statistical significance was found when sampling weights were omitted.

A second study found mother of autistic children were more likely to have elevated levels of certain inflammatory markers. A third, which drew from CHARGE data, mothers who had any combination of type 2 or gestational diabetes, chronic hypertension, or pre-pregnancy obesity were significantly more likely to give birth to children with autism or another developmental delay. The fourth and final study examined Cesarean-section births and autism using CHARGE data and found no statistically significant link between birthing method and autism. The research was presented in a press conference at the International Meeting for Autism Research in San Diego, but they have yet to undergo the scrutiny of research published in peer-reviewed medical journals. A study co-author who was interviewed for the story did say many factors were modifiable, so if they are confirmed as autism risk factors, they could be altered.

The article should not be a cause for panic as findings are in the preliminary stage and several health factors like diabetes and obesity carry more dire health risks than a potential autism diagnosis in children. While placing a time frame on when the factors described in the array of studies presented at the International Meeting for Autism Research would be confirmed isn’t the most productive choice with the slow-and-steady nature of study development, a confirmation would be significant. Coupled with the continuous attention given to the dangers of obesity and diabetes, mainstream news outlets would waste no time hyping or even saturating media with such a link. Even if a link is confirmed should these studies exit the preliminary stage, I doubt a significant impact would occur with personal health, with obesity on the rise and a lack of incentive, initiative and resources blocking efforts to combat the problem.

Jenifer Goodwin and articles on studies are quite common this year; this is the third story published by Goodwin that I’ve discussed in 2011. She sorted out a lot of data in a facet of journalism notorious for its difficulty to communicate meaning. Given the story’s nature, fitting results from four studies wasn’t too difficult though, as Goodwin highlighted each piece of data and offered a brief expansion to explain its significance. She tempers the findings by not only including the caution from researchers on the preliminary state of data, but ending the article explaining why such data should be viewed skeptically until more research is conducted.

I don’t expect Goodwin to tackle four studies in one article on a regular basis as the research was presented at a significant event. Such gatherings are prime for swarms of data, analysis and conclusions in an attempt to decipher the mystery of autism. Generally, one study will be spelled out per article, as most are published in peer-reviewed medical journals that are distributed regularly. I don’t foresee supplementary coverage from journalists as the information is still speculative, but the studies may lead to additional examinations on a possible link, either disputing what was found or reinforcing conclusions. Those future developments will be the focus of Goodwin and other news editors as this story evolves.

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Autistic kids can shout “Hallelujah”

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No three-month hiatus this time, although I’m surprised at the number of visitors who have found the site since my last post.

And the number of young autistic visitors for church services is also on the rise. Kelly Heyboer of USA Today published a story late last month highlighting increased acceptance of autistic parishioners in church services by illuminating efforts in New Jersey. The director of pastoral ministry with persons with disabilities for the Archdiocese of Newark said despite the heart and theology Christian churches offer to patrons, not all who attend worship live the meaning. The director runs the “Attends Mass” program that offers training for religious educators and support groups for parents, while a few churches host an event similar to sensory-friendly screenings from movie theaters. Called Inclusive Family Masses, autistic children can be loud or disruptive with no chance of being escorted out of church.

Caldwell College and its campus chapel also actively engages in integrating autistic children with Christ, where a new Center for Autism and Applied Behavioral Analysis just opened. A Caldwell graduate student was featured by Heyboer for her involvement in the “Mass mentors” program. A dozen New Jersey children have buddied up with mentors who train them on proper behavior while attending Mass. The process, the subject of a doctoral dissertation by Caldwell’s graduate student, begins by bringing children to the last five minutes of Mass and slowly adapting them to the entire service, called “backward chaining.” The executive director for Caldwell’s autism center says “backward chaining” is applicable to any religious following.

Heyboer bookends her story with the “backward chaining” approach, even though readers aren’t aware of the term until the next-to-last paragraph. Her first two paragraphs highlight the method’s effectiveness with an autistic boy who spent months of training to manage Mass, while the end of the story spells out the steps I listed earlier. No quotes are given to non-scholarly sources, not even from the mother and son featured in the lead, with the expected angle of struggling with church placed with a mother of an autistic teen who also is a task force member of the National Catholic Partnership on Disability. While her experience may validate the obstacles she battled with bringing her autistic son to church, readers don’t get much perspective on the response from beneficiaries of the services featured in Heyboer’s article. The premise would likely be similar, but getting a word with people not directly involved in efforts can provide a more unbiased analysis on the success rate of implemented programs.

Heyboer’s story is a far cry from the controversy generated three years ago when a rural Minnesota church filed a restraining order banning a 13-year-old autistic boy because of loud outbursts (and that story was played heavily in Minnesota media as such a move was unprecedented to journalists). With Minnesota’s growing ties to autism in the Somali population, where Islam is the predominant religious practice, I wouldn’t be surprised if a religious leader or two from that community picks up this story and applies the “backward chaining” method discussed at the end of Heyboer’s article. The struggles families with autism face at their place of worship are already documented in Twin Cities media, which included a discussion of how far is too far when balancing accessibility and safety. Not seeing a similar story in the Twin Cities may sound surprising when they were briefly the center for autism and religion at first, but since several methods in Heyboer’s story are relatively new, not even the speed of today’s news will ring bells in the brains of news producers and editors immediately.

Regardless of the denomination (the story focused on Catholics), big crowds, loud music, and long periods of silence or monotony can overwhelm the senses. Combine nerves of parents already cautious about bringing their autistic children in public places, and not even the teachings of religious leaders can prevent isolation. Such concerns have led some priests and parishioners to discourage autistic children from attending church service. Heyboer’s story suggests that trend is reversing. No matter who people worship, I imagine families with autistic children will have their prayers answered, if not already addressed.

Wakefield remains firm about “fraudulent” study

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Photo by Steve Parsons, PA Wire

The discovery of “doctored information” on Andrew Wakefield’s discredited study linking vaccinations to autism has generated a lot of publicity and fuel for news outlets, and little time was wasted in pursuing the major angles involving this week’s development.

Although evidence refuting a link continues to grow, support for Wakefield and his study in question has yet to shrink. An independent survey reported 58.3% of respondents dissatisfied with research investigating a relationship conducted and/or funded by the Centers for Disease Control and Prevention (which may stem from a general distrust in government, as Congress has had dismal approval ratings for years while conspiracy theories remain abundant). 90% of those surveyed want to see studies comparing vaccinated and unvaccinated people to see if there’s a difference (Frontline addressed this issue with The Vaccine War last year). Wakefield still supports his study, first published in 1998.

Jenny McCarthy’s organization, Generation Rescue, claimed the media was mischaracterizing Wakefield’s work. McCarthy was quoted on The Vaccine War saying she’d rather risk her child getting mumps than autism and is a strong supporter of reducing the number of vaccinations a child receives.

Most who follow and/or studied media will tell you that media’s a popular target when news is reported that contradicts an argument for a sensitive topic. Media’s fluidity and the rapid pace news spreads certainly contribute in the present, but “blaming the media” existed as far back as Senator Joe McCarthy’s “witch hunt” of the 1950s, when he accused Edward R. Murrow of supporting Communists after Murrow published several reports with CBS on McCarthy’s activities.

Jenny, while not related to the late U.S. Senator, isn’t any more immune to blowback than Joe was. The Generation Rescue statement has Twitter users taking a swipe at Jenny for a perceived lack in parenting skills. And we’re only through the first week of 2011. Imagine what the next 51 could bring to this debate.

While the developments are new, the story itself hasn’t changed. In effect, AOL News considered Deer’s research that led to his suggestion of Wakefield’s study being fraudulent represented one side of the argument; that his research is invalid because of “tainted evidence.” While I doubt any reporter would be accused of bias simply for running that story, AOL News deemed interviewing the flip side of the debate, where belief that vaccinations are responsible for causing autism, worthwhile. Deborah Huso’s article effectively illustrates what I explained yesterday about two sides of an argument always attempting to one-up each other, resulting in a never-ending debate. The other factor, of course, remains the lack of a concrete detection method. Until that day comes, the cycle of latching on to a theory that appears to make sense will continue.

The most intriguing element in the vaccine debate’s latest chapter is the response toward Wakefield’s supporters. While a continuously present stream of thoughts exist on Twitter due to its nature, this is the first time I’ve seen social media used in a news story related to Deer’s investigation. While it’s technically impossible to gauge why McCarthy is taking a Twitter assault, consumers are known to grow weary over denials in the face of indisputable evidence or even an association to the contrary. Although it’s illogical to judge parenting skills based on one element of being a parent, that won’t stop opinions from being expressed online, and that in itself could indicate public perception of a controversial topic.

Deer’s discovery and reaction won’t be the last chapter in the vaccine debate. In fact, the recent news has already made a local impact in the Twin Cities area (my “home base”), and I’ll examine how they approached the fraudulent data claim in my next post. Until then, expect the patterns I’ve detailed in this post to persist when a future development is published about the refuted link between autisms and immunizations.

People confusing learning and mental disabilities

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USA Today reported findings of a telephone poll conducted by the Tremaine Foundation today, discovering that 79% of parents and 80% of non-parents associate learning disabilities with mental retardation (Acknowledged dyslexic Jay Leno wouldn’t like this), while a majority of Americans (no exact numbers are given, but we know it’s at least 51%) also incorrectly group mental disorders like ADD and autism with learning disabilities. While there’s a greater understanding of disabilities and thought processes of people that continues to grow, the Tremaine Foundation is concerned about confusion with teachers and parents in addressing those affected by a learning or mental disability. A learning disorder doesn’t affect a person’s intelligence, only the brain’s ability to process, store and respond to information.

This may explain why reporters continue to stress the general symptoms of disabilities despite the increase of coverage and resources for those diagnosed with some sort of condition. While it’s clear that a large segment of the population is mixing things up, no margin of error is listed because the results are clearly one-sided (if you’re curious, it’s 3.1% based on the 2010 census estimate of the U.S. population. I linked the calculator here for you to try). Margins of error are generally listed when opinions are closer to an even split, and will be shown on most political polls.

Regarding why there’s much confusion on what is a learning disability or mental disability, only theories exist, but the USA Today story could be used as a springboard to dive into what would be a deep pool. Many profiles of autistic people will show difficulties in mental capacity, where an adult essentially has the mind of a much younger person. Few autistic kids are mainstreamed at school and the portion of autistic adults successfully integrating in social or work environments is also small. Many are mute as a result of their communication shortcomings. How those issues are interpreted as learning disabilities is difficult to determine, but the lack of vocal communication and approaches for it could be a false alarm, since speech problems can be addressed through therapy.

On the flip side, learning disabilities, including dyslexia, could be incorrectly seen as mental retardation when the general lack of understanding about disabilities among unaffected individuals is applied. Because the brain cannot handle information in the same way as others, people afflicted with learning disabilities often require some assistance until a solution is found. Such assistance may be seen as mentally inferior, even though data proves otherwise.

Now that a background exists on why almost every autism story includes a factoid on what the condition is, the logical step for news outlets is to examine what causes the mix-up between learning and mental disabilities. Otherwise, we may continue to see old facts about most common disabilities rehashed, taking up possible space or time for things to help our understanding move forward.