The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘parents

Quest for autism’s “holy grail” engulfed by maze of treatments

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Dr. Mark Geier. Photo by Jed Kirschbaum, The Baltimore Sun

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.

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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

Books are “in” for sharing autism stories

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My apologies for not keeping up more frequently during Autism Awareness Month. Duties at my station and the Minnesota Festival of Nations precluded my attention to the site, but with things quieting down for the moment, I have more time to address the site again.

If there’s one thing I’ve noticed with the explosion of media resources available on autism, it’s parents often writing books profiling their own journeys handling autistic kids. The latest to come forward is Shonda Schilling, wife of retired MLB pitcher Curt Schilling, with her book: The Best Kind of Different. She details her experiences raising Grant, the only child with Asperger’s Syndrome among 4 kids. Shonda shared some of her obstacles in an AOL Health Q&A.

Unlike Jenny McCarthy’s book, which documented the process that she believed “cured” her son from autism, Schilling considers those on the autism spectrum as having rewired brains. She also doesn’t equate Asperger’s, autism and autism spectrum disorder together. Parts of her story are familiar with other parents: wondering if she was a bad parent, what her son’s future would hold when she learned about the diagnosis, autism followers should get the drill by now. Unique to Schilling’s story was enduring her son’s uncommon behaviors often without her husband, until he officially retired from baseball in 2009. While most marriages end in divorce when autistic children are factored (the rate is far higher than those without autistic children, although celebrities could give families affected by autism a run :-P), Curt and Shonda hired a counselor to help sort out their differences. Since his retirement, Shonda says Curt has experienced her parenting struggles.

Shonda won’t be the last parent affected by autism to articulate her trials by written word. The variables are no different than what I’ve observed in faster, less detailed media on autism: that individual results will vary. Studying the Q&A, however, not getting a diagnosis for Grant until age 7 may have benefited her and the Schillings. Most kids have completed the largest percentage of vaccinations at that time, and her interview didn’t indicate that he regressed after getting vaccines. There are too many variables to make an indisputable conclusion, but it’s clear she chose to focus on what’s ahead for Grant, which will help him as he continues to develop.

I’m surprised Shonda’s book release hasn’t been played up more since the author herself is rather optimistic about her relationship and her children. However, Shonda doesn’t have the level of star power that McCarthy has (and only sports fans would be truly aware of husband Curt), and her perspective on autism is far less controversial than the former Playboy playmate’s. Mainstream media may see the release and her stories as “white noise” on the topic of autism, but I can’t imagine parents aren’t looking for ways to not only adapt with their autistic child, but their own relationship to ensure that autism won’t destroy the bond. The future of autism can be just as optimistic and unpredictable as every other disability or disease out there, but I’m not sure if major news outlets understand that yet.

Written by TheSportsBrain

May 5, 2010 at 8:37 pm

Act your age

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The New York Times reported a study released by the journal Autism Research earlier this week suggesting that older mothers are more likely to have an autistic child and older fathers also increase the risk when his partner is under 30.

The research was conducted on five million births in California during the 1990s, with 12,159 of those children receiving an autism diagnosis. Fathers 40 or older who had children with mothers 30 or younger increased the risk of having an autistic child by 59%.

The new study may challenge previous research that linked a higher rate of autism with advancing paternal age, but not with advancing maternal age. However, the authors said that alone doesn’t account for the sevenfold rise in autism cases in the 1990s.

Studies are notoriously long, tedious and often can’t account for every variable due to lack of resources, and even though the results may bring new answers for the causes of autism, most in the know about the disability are aware of the hasty increase of autism diagnoses in the last decade. However, since we’re only a month and a half into the new decade, it’s unlikely we’ll know about any changes that took place from 2000-2009 for some time. When published, studies will often note potential fallacies of the published findings and/or list the methods used to obtain them, so other studies on the same topic can use them as a reference. Studies have a similar structure to film and TV documentaries; they’re not meant to be an end-point to specific issues, but another piece to solve a very long puzzle.

One such drawback is the sample size. While over 12,000 California newborns were examined in the study, that leaves out 49 states. It’s safe to say autism increased in those states and there’s enough to theorize that similar increases regarding autism and parental age happened at other states, but at what levels?

The story isn’t getting much buzz outside The New York Times. Super Bowl XLIV is a likely culprit, with reports on its record-breaking ratings (passing the M*A*S*H* finale as the most-watched TV program in history). Another could involve the nature of media coverage itself. Local, national and 24-hour cable news often blitzkrieg major headlines throughout the day, but don’t offer many updates in a 24-hour period. Seeing the effects of swine flu saturating airwaves last spring, avian flu a few years ago, and the endless amount of information coming in after 9/11, we should consider ourselves lucky. In situations that threaten security, the reaction from the herd is often panic, and hyping the finding of the study may only add another fear about having a child.

I believe the lack of attention to the new study is caused more by other big news stories than a conscientious decision by news producers to avoid overloading consumers; we’ve seen little change from news outlets to suggest they’ll handle the news more intellectually this decade than they did in the previous one.

Written by TheSportsBrain

February 10, 2010 at 12:41 am