Posts Tagged ‘study’
A story picked up by several news outlets, including Reuters and ABC News (whose version I’m critiquing in this post), reports results of a small study published in the Journal of the American Medical Association that suggest autistic children have heavier brains and an overflow of brain cells called neurons.
The study is crucial because it presents the first exhibit of hard evidence of brain development veering off course for autistic children. Previous research showed that autistic children have larger heads and brains, with key regions that develop communication overgrown.
The study, using brains of 13 boys that were donated for scientific study after their deaths, discovered that brains of autistic children have 67 percent more neurons in the prefrontal cortex than non-autistic brains. The prefrontal cortex is linked to emotional, social and communication processing. The study’s lead author notes how surprising the finding was, also suggesting the abnormal development occurs in the prenatal stages as neurons aren’t generated in the prefrontal cortex after birth. Autistic brains also weighed 17.5 percent more than non-autistic brains.
While a future avenue could be explored in the research to find a cause, many point out the findings are preliminary and don’t apply to children and families currently dealing with autism. There is also no way to analyze brain tissue of living children.
The small sample size and lack of immediate impact may discourage some readers upon encountering this story. However, the findings are notable with several major outlets offering their version of the results published in the Journal of the American Medical Association. Although not new, the story does reveal through autism brain research that a physical characteristic that could possibly signal the condition exists, but not every person with a larger-than-average head will automatically develop the disability.
As with most study findings, extrapolating the results to a form that fits mainstream journalism remains simple, yet difficult. When combining the small number of brains studied with the lack of any immediate significance for the autism community, the challenge for reporters is seeking a relevant development for a scientific breakthrough. In this case, Gann points out that discovering that an abnormal development occurs before birth could lead to improved screening efforts in the future.
Another possible avenue that could be investigated with the knowledge of this study are what effects larger, heavier brains with more neurons could have on autistic people. Several stories on this blog and general knowledge will highlight the untapped gifts of the autism spectrum, including superior memory skills and focus. This is by no means a suggestion that larger brains equal smarter people, but considering the astonishment from the public when autistic people demonstrate skills with general knowledge, but a plethora of stories relating to autism and the brain could be found should this study lead to more examinations.
For now, we’ll have to settle for current methods of diagnosis as science always approaches its studies with a methodical attitude.
CNN picked up a story originally published by Health.com reporting that a new study may help detect autism in children as young as 1. The study is a 24-item questionnaire that assesses a child’s ability to communicate via eye contact, sounds and gestures. Warning signs could then be noted, allowing children to receive treatment earlier than current models. The Health.com story lists the average age for a diagnosis at five years old. Although the lack of biological signs for autism can make diagnosing the disability tricky, the questionnaire takes five minutes to fill out and can be scored on the spot.
The checklist doesn’t identify autism spectrum disorder specifically, but will tell takers something is wrong, which may point to autism or another developmental delay. In the study, where 137 pediatricians in the San Diego area screened over 10,000 children, only 32 of the 184 children whose development was below normal were diagnosed with autism. However, 56 were diagnosed with a learning disorder and 9 had another disorder entirely. Overall, the questionnaire’s accuracy level from the study’s data pool was 75 percent.
While the questionnaire doesn’t add the long-awaited biological marker everyone in the autism community, the questionnaire showcased its potential with detecting delays in developmental skills. Although the accuracy rating may make some parents squirm, there may be some satisfaction with its versatility, especially when virtually all medical professionals stress intervention as early as possible. One reason for the accuracy rating may simply be who they screen. Infants and toddlers are far from developing their abilities with motor and communication skills, as opposed to five-year-olds, where deficiencies are easier to detect. Scientific and anecdotal evidence suggest symptoms of autism aren’t clear until a child reaches 18 months of age. While the screening doesn’t specifically evaluate infants under that age, there’s a risk from parents or caregivers making too much out of the questionnaire’s findings and preparing for a disability whose presence can’t be officially identified that early.
The story itself focused on the study’s findings, how they were procured, and its potential for widespread use. Unfortunately, without an author, gauging who contributed to the story is virtually impossible. Most stories will indicate if more than one writer published the article, but stories themselves aren’t structured in different formats when written by a host of writers. The structure of journalism doesn’t change for television, newspaper or magazine writing. Even if writers have a unique approach to writing a story, the editing process will streamline the final version.
Developments on this questionnaire will unfold over time, but the community will eat up almost anything that may give them an edge, even if a wild goose chase ensues.
The start to the 2011 calendar year was rocky for Andrew Wakefield, whose study was declared false by British journalist Brian Deer, who published several stories in the British Medical Journal highlighting Wakefield’s alleged false claims and unethical practices. Deer compared Wakefield, who lost his medical license after his study linking M.M.R. vaccines to autism was retracted last year from the medical journal Lancet, to a religious leader who occasionally uses the smoke and mirrors technique to goose the faith of his followers.
Deer’s investigation was one of many facets spilled out in an article by Susan Dominus for The New York Times Magazine, a longhand form of the country’s most recognizable newspaper. As with any form of magazine writing, the stories take on the form of novels and are more descriptive, too descriptive for me to summarize in shorthand form. That’s no reason to turn away though, as Dominus provides an insight on Wakefield no American reporter has offered before. Through her journey interviewing and shadowing Wakefield, we learn that Wakefield himself didn’t claim proof that M.M.R. vaccines were causing autism, but that didn’t stop his concerns from spreading worldwide the same way viruses spread through the body until its defense mechanisms can suppress it. If recent media coverage is any indication, Wakefield became one of the most reviled doctors of his generation, receiving blame for starting a panic that led to the resurgence of diseases long squashed by vaccinations.
Despite the wave of damning evidence which has led him to close himself professionally, he still draws followers, as 250 attended a discussion he conducted regarding his work. His supporters view him a hero when nearly everyone else paints him as a villain. Wakefield himself believes public health officials and pharmaceutical companies pay bloggers to post vicious material about him. Throughout the story, Dominus compliments Wakefield’s persuasive skills, even when the audience knows better. Wakefield continues to fight and promote his theory, with Dominus adding that the more he has sacrificed (he resigned from London’s Royal Free Hospital following his publicized concerns and now lives in Austin, Texas), the more he must believe in his theory, or all efforts will be rendered useless. Ironically, medical experts suggest aggressive studying of the M.M.R. vaccine following Wakefield’s 1998 media splash means the vaccine is one factor than can be ruled out in a disability still shrouded by mystery.
Dominus assures the readers that she isn’t necessarily siding in Wakefield’s camp, but she does give him an opportunity to present his case as other reporters who interview Wakefield quickly write him off as a discredited liar. By not falling into the dramatic trap that can detract storytelling from other outlets, readers of this story see why Wakefield continues his battle for reputation with his supporters waiting in the wings to back him up. We even learn a few personal anecdotes about his life before gaining his notorious status in Great Britain and most of the United States.
In order to obtain the behaviors, characteristics and traits Dominus lists regarding Wakefield, interviewing goes well beyond the simple press conference or brief one-on-one interview. Traveling with the source and immersing in the source’s comfort zone is common, and more relationship skills are needed to ensure you get the story requested in your assignment. In the case of Wakefield, encountering Dominus and her approach may have been more comforting since she offered a value other reporters decided to box away, even though she was no less neutral than shorthand writers covering the Wakefield saga. Ultimately, Dominus reveals the basis of Wakefield’s support comes from parents seeking answers who credit him or his associates for trying a possible solution, even if the strategy is cautioned by others (including casein and gluten-free diets, a media craze for a short time).
Magazine-style writing allows writers like Dominus to include more details and examine many subtopics of a story that traditional news articles can’t provide because of space or time constraints. Her observations may not remove Wakefield’s “villainous figure” in the eyes of the medical community, but just as the Marvel Comics movies emphasize human elements within their villains, Dominus’ story leaves Wakefield less clear-cut than previous mainstream glimpses portrayed him.
A new study published in the May issue of Epilepsia shines more light on the link between autism and epilepsy. The findings were picked up by multiple media outlets, including WebMD and U.S. News and World Report, where health reporter Jenifer Goodwin once again broke down the results. Researchers who looked at records of 127 patients aged 3 to 49 who were autistic and had at least one seizure over a 20-year period at the NYU Comprehensive Epilepsy Center in New York City. They found 34 percent of those patients had treatment-resistant epilepsy, meaning seizures continued despite taking medication. 28 percent were seizure-free after treatment and the remaining 38 percent could not be categorized because there wasn’t enough information to determine if their seizures were treatment-resistant or not. The average age of the first seizure in treatment-resistant epileptics was also significantly younger than those whose seizures were treatable (6 for TRE patients versus 11 for patients without TRE). Autistic TRE patients were also more likely to suffer impairments from autism spectrum disorder, as 54 percent of TRE patients had motor skills delays versus 35 percent for those with treatable epilepsy. Autistics with TRE were also more likely to experience developmental regression, which is sometimes noted among parents or other observers following their autistic children. The study’s author, Dr. Orrin Devinsky of the NYU Langone School of Medicine and director of the NYU Comprehensive Epilepsy Center, suggested autistic children may need screening for epilepsy in order to learn more about the connection between the two conditions.
Goodwin has been busy making sense out of study numbers the last couple days. Unlike her last story about a survey of parents on vaccinations and their trust with different sources, Goodwin uses more figures in the autism/epilepsy study to highlight patterns suggesting epilepsy may be more common and severe when it targets autistic people. For those of you wondering why the study sample is small, recall that autism itself is still statistically rare and some people who may be on the spectrum may not have an official diagnosis. Likewise, the number of epileptics in the world is less than one percent, meaning the statistical odds of encountering an autistic with epilepsy are slim. The results of Devinsky’s study will likely spur more investigations on the link between epilepsy and autism if none weren’t already underway, paving the way for more insights on autism and epilepsy or perhaps presenting other information that may not agree with the study Goodwin reports about.
Remember the inverted pyramid I’ve been talking about for the last few posts? It’s hard to miss in this story, with the first piece of data highlighting the percentage of autistics with TRE, then going into other data relating to autism spectrum disorder, then tying the study with the Journal of Child Neurology publication suggesting epilepsy is more prevalent with autistics than previously thought. She does grab a few quotes from Devinsky, the study’s author, but most of the story spells out the study results. That technique is common with stories on studies as reporters follow their deadlines and, depending on the location or mission plan of the news organization involved, finding the human interest source is hard to find with the low odds of a person diagnosed with both autism and epilepsy.
I’m not an epileptic, but I have read about autistic children and adults suffering from seizures in my observation of autism articles and videos. Neither autism or epilepsy may be curable, and the study only begins to excavate a relatively unexplored area of the autism spectrum. With autistics already facing prospects of sensory overload on a daily basis, making the leap to seizures isn’t a stretch. Seeing more stories linking autism and epilepsy should be expected in future media coverage, but knowing when more reports will file in will be a harder task.
The Journal of Child Neurology published results from research on donated brain tissue from the Autism Speaks Autism Tissue program. The study found that people with both autism and epilepsy had a higher death rate than those with autism alone. 39 percent of donors to the tissue program had epilepsy, higher than the estimated rate of epilepsy in the general autism population. The study authors also examined data from the California State Department of Developmental Services, and found that people with both conditions have an 800 percent higher death rate than those with autism alone. A neurologist and member of the Autism Speaks Scientific Advisory Council suggested that both the autism and epilepsy communities should be motivated by this information to increase understanding of common risk factors and mechanisms of both conditions. The story, while short, has been picked up by multiple news outlets and blogs based on a Google news search I conducted.
The most glaring piece of information that must be examined is the 800 percent gap in the death of rate of autistics and autistics with epilepsy. While that may sound alarming, news outlets and study publishers will often relay statistics in that format as a means of generating attention. That doesn’t mean the information is false, but such margins can still be dramatized (another way news writers will dramatize such a stat is saying “eight times as likely”). When it comes to death rates, the overall percentage can never go beyond 100 for any particular category (and all living organisms eventually die). Unfortunately, not enough constants are given in any news article on this story for me to make a statistic that is less misleading. We don’t know what the death rate means, but based on the data presented by California’s Department of Developmental Services, we can make an educated guess that the death rate in this study refers to a specific point in the lifespan, and that the death rate is relatively low.
In fact, to obtain 100 percent using a multiplier of 800, the death rate of people with autism alone could be no more than .125, an eighth of one percent. It’s safe to say both figures are far lower than that with what I can deduce based on the information presented. In other words, there’s little statistical evidence to be highly alarmed by these findings because news articles did not provide any base percentages to work with. While that would certainly kill a story’s emotional impact, it would also kill any chance the story could be interpreted as a cause for panic. To add mathematical insult to injury, we’re not given the estimate of epilepsy overlapping with autism from the Autism Speaks tissue donation program.
I do not know any autistic people with epilepsy, but a colleague of mine did suffer from an epileptic episode in college. As the two of us live with the experiences of our respective conditions, it can be difficult when stories like this surface and leave out a few minor details that wouldn’t take much time to procure. Either reporters didn’t bother to review the study carefully, or the study itself did not include any base numbers in its findings. While deadlines and space are always the bane of reporters, one task that’s prided on is the ability to provide information so the audience doesn’t have to spend time or resources doing the same.
However, this may also serve a lesson on learning common mathematical functions. Journalists have an old adage about running away from math because that skill isn’t needed for all stories, but crunching numbers is valuable to put stats in perspective, which this story lacks. Calculus isn’t required, but it won’t hurt you to convert numbers into percentages, fractions, averages and so forth.
I’m sure plenty of you are wondering what happened to this site’s activity. To summarize, my schedule was eaten up by a swarm of Minnesota state tournament coverage, but I’ve now returned from my hiatus to continue informing you of autism’s role in the news. I appreciate the visits you’ve made in my three months away from The Autistic Journalist, which passed 10,000 hits during my pause. To thank you, I’ll pull out an article I had saved to discuss with you.
Two months ago, MSNBC reported a study suggesting testosterone could be a culprit in the higher prevalence of autism in males. A similar story was picked up by a CBS TV affiliate in Green Bay, but that story has since been removed. The study found testosterone lowers the ability for cells to express a particular gene known as RORA. That gene, when activated, can protect neurons from the effects of stress and inflammation, and both are elevated in autistic people. Conversely, estrogen raises RORA levels, which may protect females against autism even if RORA levels were otherwise low. An alternate theory is genes in the X chromosome, suggesting females have a “backup copy” since they carry two X chromosomes while males have one X and one Y chromosome. Despite the theory’s plausibility, no X chromosome genes have been associated with autism.
This doesn’t mean your boys will develop autism upon reaching puberty, when testosterone increases can be noticed. The story gives us a potential clue to autism’s cause, but genes and testosterone levels are simply a game of chance when cells are developing. The explanations provided in the story make sense, but more research will be needed to make an accurate conclusion to this hypothesis.
While the story doesn’t say much, people have been wondering why boys are more likely to receive an autism diagnosis than girls, and any step that brings an answer closer to a question may help ease the mind of concerned individuals.
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.
A Columbia University study discovered something that might make “Octomom” or other parents eager to have several kids pause for a moment: Children conceived less than 12 months after an older sibling is born are three times more likely to develop an autism diagnosis. According to the study, which documented 662,730 second-born California children from 1992 to 2002, the multiplied risk doesn’t subside until at least 23 months have passed. While no data was found suggesting an explanation for the statistical findings, medical experts assert that the risk of actually developing the disability is still low. The study was conducted because authors noticed previous research revealing an association between short intervals and other brain problems, including schizophrenia.
Because the study focused on finding a link and not the factors increasing a child’s likelihood of developing autism, the only speculation offered was nutritional deficiencies that appear in the years immediately following the birth of a child. While this offers little insight about the research, the timing is notable considering my post two days ago when WCCO mentioned the pause parents are having about vaccinating their children. When factoring the overall risk of developing autism, the percentage is low, with current estimates around 1%. However, most journalists and editors will gloss over that specific number in favor of flashy, attention-getting figures. In fact, it’s a pattern you’ll see on most reports about studies; the percentage difference is listed, usually in multiples (twice, three times, four times a likely, etc.), but the overall percentage is never calculated.
The lack of statistical detail often irks me when I read or watch stories on studies because reporters rarely put new findings into perspective. No reference point is often an ingredient in driving the news audience to a state of paranoia, because the audience is more likely to ignore the 1% chance of a child developing autism and see a flashing LED sign about the three-fold increase for children conceived less than a year after their first-born.
To be fair, Linda Carroll, who published MSNBC’s version of the story, does acknowledge the potential of scaring parents-to-be by including figures on the recommended intervals for multiple kids. She also quotes two medical professionals who advise people maintain their common sense about deciding to have a child. Such anecdotes are generally included in reports about studies that could carry significant implications to people’s health. Also stressed are the unanswered variables the study hasn’t accounted for, which only means further research lies ahead, leading to more questions as the search for factors that increase a risk of autism continues.
I’m the oldest of 4, and I’m sorry to say I’m the only screw-up of the bunch . While more questions than answers are revealed by this study, it symbolizes autism’s increasing saturation with Americans as several outlets picked up the study. This may also provide more evidence to organizations who recommend a more patient stance (including the World Health Organization) to ensure the best health for both mother and child. Ultimately, there will always be a risk of something when giving birth, but that hasn’t stopped most parents (and more shady figures) from “laying their eggs.” Journalists would be advised to hatch more stories about the Columbia University study for future use.
WCCO’s take on Brian Deer’s suggestion of doctored information in Andrew Wakefield’s study that concluded vaccines were a cause of autism illustrates the magnitude of the controversy. Whenever you see a local news source provide their own take on a national story, that generally means the subject is either well-known to the audience or there’s a serious need to inform the public about a potential mass impact.
For WCCO, CBS’ Twin Cities affiliate, they used the recent development to explore how Wakefield’s study impacted immunizations. WCCO talked with parents of twins who wanted to be sure they made the right choice when it came to vaccinating their kids. On a broad scope, they would certainly appear to be reporting “yesterday’s news” as they tell their viewers how Wakefield’s study caused parents to put more thought into all vaccines, not just the MMR shot in Wakefield’s research. For followers of autism in the news, this story doesn’t reveal much that isn’t already known: parents pausing to consider the “what if” questions out of concern for their children, and as I mentioned in my first post on the new development with Wakefield’s study, fear is a powerful catalyst in decision-making. Logic isn’t even enough to defeat the presence of fear. Ultimately, the parents WCCO interviewed decided to vaccinate their kids and no side-effects occurred, as they rarely do when immunizations are administered.
I’ve discussed why local news sometimes gives off a lackadaisical appearance with some of their topics of interest before, and some of those reasons return in WCCO’s latest autism story. Primarily, the news producers don’t believe their audience is fully aware of autism yet, as they re-iterate what autism does to its inhabitants and that no one knows what causes the disability. Given how short a window most video packages are (news code for a story generally 60 seconds or more covered by a reporter), there’s little time to explain the finer, more complex questions currently surrounding autism.
What we can learn from this story is how much attention local news producers are giving for, in this case, an international story. Few would question WCCO if they decided not to pursue a local angle to Deer’s discovery, since local TV news can’t focus on one topic for too long without risking losing audience interest. However, Wakefield’s study created huge implications, too big for most reporters to ignore. WCCO is simply doing what most of us affected by autism or worry about the disability already are, keeping an eye peeled for new leads, stories, developments and breakthroughs.