The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘cost

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.

Interior Secretary reveals interior autism battle

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Mireya Salazar is embraced by her grandmother and foster parent, Hope. Photo by Aaron Ontiveroz

Political junkies may recognize Ken Salazar’s name, as he was named Interior Secretary when President Obama officially entered his first term. Autism followers may soon recognize him as well; he is the grandfather and foster parent of Mireya Salazar, a three-year-old girl diagnosed with autism last year. Ken and his wife, Hope, assumed primary custody before any symptoms were displayed when their daughter, Andrea and Mireya’s father, Nelson Rodriguez, could not care for her themselves. The goal of the arrangement was to allow Andrea to continue her collegiate studies while making Mireya eligible for Ken’s health insurance.

Eric Gorski of The Denver Post covers Mireya and the journey she only begun last year, reporting a story whose length and style rival most magazine features. His reporting includes the usual tales of an autistic child (every door in the house must be closed, refusing to eat non-white pasta, fascinated with “blank space” more often than Ken). Although Ken provides recognition to the Salazar name, Hope is the primary caregiver, transporting Mireya to and from school and taking her to visits with her father’s family. Embedding himself in the Salazar’s lives, Gorski shares an exchange between Hope and a local priest following a Sunday mass, where Hope affirms her love for Mireya will never extinguish no matter what lies ahead.

Interior Secretary Ken Salazar

Gorski then pulls back to Mireya’s childhood through the article’s publication, explaining how her name was chosen (a baby-name website said the name meant “miracle”) and a quick glimpse on the path that led her mother, Andrea, to allow her parents to care for Mireya. We learn Andrea’s choice was based on what she believed would be best to support her daughter, which was obtaining a college degree. Although she and Rodriguez are no longer partners, both families stress Mireya’s well-being holds priority. In particular, Rodriguez has learned patience as Mireya doesn’t follow expected emotional responses.

The next segment, Mireya’s display of symptoms that led to a diagnosis, and while the story is familiar for those who follow autism in the news or are part of its community, although we do learn Mireya’s diagnosis was made earlier than usual. The Centers for Disease Control report the median age of a child diagnosis ranges from 4 1/2 to 5 1/2 years. Mireya was two years and one month, and that was after two doctor’s visits following the Salazar’s rejection of a hearing impairment caused by fluid buildup when Mireya began regressing.

Rather than worry about potential causes, the Salazars decided to deal with the reality of their autistic family member and the women moved to Denver after treatment options in Washington were lacking. While the move meant leaving Ken, it also meant Mireya could take part in the Early Start Denver Model, which builds interactive lessons into play and the normal flow of the day versus more traditional techniques where children work on lessons in front of a table. Unfortunately for the Salazars, Denver Public Schools rejected a request for tuition reimbursement for Mireya’s therapy at Firefly Autism, whose lessons are similar to the Early Start Denver Model. Their insurer, Blue Cross Blue Shield, is also contending it doesn’t have to comply with a recent state mandate requiring some private health-insurance policies to cover autism treatments. The Salazars pay $40,000 annually for Mireya’s treatments, and such price tags are common because of a low student-teacher ratio, worker’s compensation, and occasional safety hazards with autistic children who suffer violent, emotional outbursts.

The premise is familiar, but Gorski knew exactly what stood out in this story and utilized his advantage without abusing his resource; the grandfather and foster parent of Mireya is a sitting U.S. Cabinet member whose name and job title have little influence with Mireya’s care. Gorski balances the star power of his story by supplanting himself within the Salazar family (the time is undisclosed, but the number of anecdotes in the story suggest he engaged his sources for an extended period). Readers learn more about Hope and her background versus the former U.S. Senator’s, even if it’s only a byproduct of the distance between Hope and Ken’s job location. Tales of the quest to address Mireya’s autism are paused by highlighting a rarity among autistic caregivers: signing away custody rights. Obviously, Gorski spells out the collection of decisions leading to Mireya’s birth, but his tidbits on Andrea give readers the opportunity to avoid falling for an old theory blaming the cold and distant parenting of “refrigerator mothers” for causing autism in children. Readers may still accuse Andrea of poor decision-making, but Gorski’s reporting will at least shield her from charges of bad parenting.

Almost each section in Gorski’s story begins with the narration resembling fictional novels. The customary past-tense verbs are replaced with the more active present-tense when the setting allows, a technique generally seen in broadcast news but also employed in magazine-style stories and longer features. Gorski’s choice of grammar makes sense given his primary subject’s lack of experience; most three-year-olds are still developing their self-awareness and memory skills, regardless of what label is applied to them. In addition, Mireya’s course settings are still being plotted; Hope hasn’t stopped being her primary caregiver, Mireya’s therapy is ongoing, and the Salazars remain hopeful that insurance will eventually cover her treatments. The active style of present-tense verbs presents a more engaging storyline for readers than the passive illumination of past-tense verbs. The structure fits with the active pursuits of the Salazar family, where the focus on Mireya isn’t why, but how.

On the surface, Gorski’s presentation of the Salazar family communicates the idea that White House employees face the same realities as private employees, even when it comes to insurance and intervention strategies. Digging deeper, we see themes of the unknown boiling to the surface, from the questions Ken has about Mireya’s future, to the myriad of intervention strategies with no clear consensus, to the struggles of finding insurers who include autism in their coverage plans. Readers may not agree with the political views of Ken Salazar, but Gorski shows them he is no less fallible than his audience, and his granddaughter is no less autistic.