The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘Kennedy Krieger Institute

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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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.