The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘research

Advantage – autism

with one comment

I’m aware of my most recent hiatus, which was partly due to Minnesota Lynx playoff coverage and Minnesota state high school tournament coverage, but now I’ve returned with a new story to share.

Unfortunately, my blog was not selected a winner in WCCO’s Most Valuable Blogger competition, but I appreciate those of you who still paid visits in my absence. While I continue to research a renewed fascination in the blogosphere and social media regarding Jason McElwain, the health page from NBC’s daytime program Today published a story about a Canadian researcher who argues scientists need to stop viewing autistic traits as flaws that need correction. Dr. Laurent Mottron, a psychiatry professor at the University of Montreal, reflects on recent data and personal experience in his assessment of the disability.

Mottron said researchers who notice activation in unusual regions of the brain compared to the average human, they report such activity as a deficit than an alternative brain organization. He nor most researchers will minimize the concerning outlook facing autistic people, but he advocates they can succeed in a favorable environment, including the field of research. Mottron has several autistic people working in his lab, where they can utilize their exceptional memories. Mottron believes intellectual problem may be over-estimated among autistic people because of inappropriate testing, saying how there is little hesitation to remove audible components for people with hearing impairments. In general, the research field has adapted a broader and deeper view of the disorder, although autism still presents many obstacles.

Rachael Rettner is the woman behind this story, and she reports on another changing trend in the approach to autism by science and mainstream media. While stories of struggle and the future will continue to permeate Google news feeds, the public has been exposed to potential benefits of the condition as far back as Rain Man, released in 1988. Rettner’s story isn’t groundbreaking either, as this blog does have a history of procuring articles on success stories in the autism community. However, with much fear about what autistic children and adults will be able to do, the story is part of a larger paradigm over the exact response about the enlarging base of autistic people. Many are quick to see action in order to address major problems, while others are concerned about an over-bearing assumption that autistic people need intervention in order to conform to expected values of mainstream society. Gauging where the discussion is tilting is difficult to evaluate given the unpredictable and inconsistent effects of autism, but researchers like Mottron see a vastly under-tapped potential that could benefit the community if utilized properly.

Talk about adaptation versus conformation will continue assuming many forms and tones. The conversation Rettner highlights is heavy on science and low on emotional output, without bold and temperamental claims that can sometimes fog progress. There is no question people given an autism diagnosis face a task tougher than a 16-seed playing a 1-seed in the NCAA basketball tournament, and reporters like Rettner will possess responsibility and influence in dictating the direction of the ongoing quest to determine what path, if any, should be laid for those who “think different.”

Placing autistic brains “on the map”

leave a comment »

Erin Allday of the San Francisco Chronicle filed an article this weekend reporting a Stanford University research project suggesting autistic children have a distinctive topography within their brains, based on data obtained from brain scans of 24 autistic children between ages 8 and 18 when compared to scans of 24 non-autistic children. Unlike previous studies that analyzed the overall volume of the brain, where it was found that autistic children generally have larger than average brains, but the information wasn’t refined enough to be useful in diagnosing or treating the disorder, the Stanford study sectioned brain scans into tiny cubes and compared the size and structure through computer analysis. What they found was a pattern of organization in regions of the brain affecting communication and self-awareness particular to autistic children (communication and awareness are hallmark facets that autism affects).

The brain maps applied to 80 to 90 percent of autistic children, and the research pinpoints a potential bio-marker should the maps be replicated in a larger group of children. While the research is years away from application in the real world, coupled with questions about the method’s validity in screening children, the goal is providing refined treatments and clearer understanding of autism’s impact on a vital organ. The research was published online in the journal Biological Psychiatry.

Numerous studies and endless research attempts to find a biological indicator for autism spectrum disorder will continue as long as the cause of the condition remains unknown. On this blog, I’ve covered urine tests and studies on genetic proteins as potential signs to determine whether or not a person fits the autism spectrum. The explorations of so many subjects aren’t all that different from “old wife’s tales” of treating various conditions. When there’s a lack of concrete indicators for a disorder or disease, researchers task themselves to discovering at least one answer. Throughout the quest, numerous possibilities and theories emerge until further research either eliminates them or creates new support to continue investigating a certain topic. Unfortunately, the process is agonizingly long and often ignored by a mainstream audience thirsting for instant gratification, and that’s one reason why stories I cover on biological research often mentions such studies are years away from widespread relevance.

Another reason? Small sample sizes. In order to determine whether a theory is potentially correct or not while avoiding over-exerting resources, autism studies will generally use a localized test group that rarely breaks four figures. This story is one example of how quickly patterns and similarities can be found among people with a particular condition, and that itself is progress compared to scientific observations of autism 20 years ago.

Allday goes through the usual angles in covering this story, explaining autism’s rapid growth while a solution to finding the cause continues. I’ve mentioned before that stories on studies are difficult to provide detailed information because what is published is usually an early step of testing a hypothesis. Allday tempers any reader who may spout that a bio-sign was found by uncovering the unknown usefulness of the research itself. Stories like hers will continue to be published to newspapers as a “mainstream translation” of what is disseminated by journals, even though answers lie far beyond. However, when a biological cause is found, reporters will hopefully have at least one story of their own to reference.

 

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

with one comment

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.

The Wakefield saga continues…with Minnesota in sight

with one comment

January 2011 is quickly going down as “Wakefield month” for autism followers. I’ll get to the new bombshell about an investigation turning up evidence suggesting Wakefield’s motives behind his debunked study were ethically compromised on my next post, but a move he made before then didn’t score brownie points with some experts in Minnesota. FOX 9, the Twin Cities’ FOX affiliate, reported Wakefield visiting Minnesota to recruit Somali parents for a research study that he is financing, but not conducting. Wakefield believes a cure could be found within the Somali community, believing a vitamin D deficiency from Minnesota’s dark winters could explain the rapid growth of autism among children of Somali descent. Other medical experts are concerned that Wakefield’s seeking to exploit a population still adapting to a culture they never knew existed before moving from the Horn of Africa. With Somalia in turmoil for the last 20 years, many immigrants call autism an “American disease,” with virtually no discussion of the disability in their native land. You can probably guess why if you know the country’s had no working government since 1991.

While Wakefield will attract attention almost anywhere with the developments since the start of 2011, the Somali angle is far more limited as their community has only recently migrated to the United States. Minnesota has the largest Somali population, much like the haven Hmong immigrants saw when they departed from Laos following the Vietnam War. Just like Hmong immigrants needed time to absorb an environment vastly different than their own, Somali immigrants will also need time to adjust. Complicating the process are elements impossible to anticipate, and for Minnesota’s Somali community, autism happens to represent one of those elements. Having no knowledge of autism before, they parallel parents and activists who are more fiercely engaged as they struggle for answers, making them more susceptible to people with new approaches.

Does that mean Minnesota Somalis are fools? Absolutely not. Despite the geographical difference, many parents will fight to the death for their children, and will not rest as they seek answers for potential issues. As Somalis continue their integration with the United States, they’ll continue adapting, learning and discovering things other citizens take for granted. Those reasons at least theorize why so few articles about autism’s impact in Minnesota’s Somali demographic have been published up to this point. Predicting the frequency or accessibility of the Somali community is virtually impossible since emotional responses cannot be simulated, but this does reinforce the fact that autism can affect anyone.

FOX 9 simply took notice of national news and found a local tie that is still relatively new in regards to press coverage. How Minnesota’s Somali community responds to autism will certainly get the attention of Twin Cities journalists. How journalists report stories about my home state’s newest immigrant bloc is the bigger question.

Written by TheSportsBrain

January 13, 2011 at 11:35 pm