The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘disease

Autism on the brain

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In a study published in the journal Nature and subsequently reported by Robert Langreth of Bloomberg News, Stanford University researchers found that stimulating brain cells with light in mice caused autism-like symptoms.

Scientists implanted light-sensitive proteins into parts of the brain linked with social behavior, then activated them with blue lasers that were routed using fiber-optic cables. The mice subsequently didn’t socialize with other animals. When using a laser to activate cells inhibiting brain activity, the social behavior was partly restored.

The findings provide evidence to the theory that autism and other brain disorders may be caused by brain circuits oversensitive to stimulation, as the balance between neurons that spur signaling when excited and calming down activity when excited may be disrupted. The vice president of translational research at Autism Speaks predicted the laser method in this study could be revolutionary in detecting brain disorders on a molecular basis, but possible therapies based on lasers are far off for now.

Langreth’s word choice could spark an uproar among the autism community, as he refers to autism as a disease in the opening paragraph. Many involved in the autism community can be testy when others equate autism to a disease, a mindset that forms the foundation of criticism for groups like Autism Speaks (and subsequently explain the optimism expressed by the Autism Speaks member quoted in the story). The reason for such animosity is the belief that linking autism as a disease suggests the condition can and should be cured, when several on the spectrum have no qualms sharing their quirk.  For the rest of the story, Langreth uses the word disorders to term autism and other mental conditions believed to be associated with the brain. That doesn’t mean he instantly recognized how word selection could generate controversy, but he believed the two were synonymous for the story. Reporters will often employ synonyms when their articles primarily emphasize one subject, as too much repetition can lose the attention of readers or suggest that a journalist’s vocabulary isn’t strong.

The study itself provides another avenue of exploration to find the cause of autism, with researchers suggesting the findings could lead to development of drugs or devices that calm or shield parts of the brain. Despite the similarities of brain configuration in animals, humans do have larger, more complex brains than mice do, and testing the study on humans is no less than necessary to validate the findings discovered by testing mice. While no repercussions were listed, the potential for side effects exists as the study explored the impact of altering brain activity. Don’t worry, this isn’t a secret plot to control life forms for world domination, but it’s more reasonable to believe this study is only a start far from its endpoint.

Because more work is needed to examine this theory, there were few sources quoted for the article, as Langreth interviewed a senior author by telephone and the Autism Speaks representative. Most stories on studies will either conduct an interview or transplant a press release by a head researcher, as other participants would likely give similar responses, creating redundancy in the story. Although no outcry exists over the study or word choice in the story, journalists may need to exercise caution with approaching autism, or even give a story on concerns over imagery associated with autism. The population is a fraction of the United States total, but the community is certainly keeping watch.

100 stories for autism surveyors

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Traffic to The Autistic Journalist has skyrocketed once more after I returned from my three-month hiatus, and thanks to your support and the constant stream of articles I find, you are currently reading my 100th post since I activated the site in January 2009. The journey of archiving and analyzing how journalists report on the autism spectrum has allowed me to examine autism and reference what I’m discussing instead of simply going off my own observations. Since my first post, this site has recorded more than 12,000 visits and two syndications with Autisable and Disability Resource Exchange. I’m grateful for this outreach so far, but I doubt they will be the only ways of spreading my message.

Speaking of messages, two surveys whose results were published in the May issue of Pediatrics and picked up by U.S. News and World Report found that 93 percent of parents who participated had or were going to get all recommended vaccines for their children, while 76 percent said they trusted their doctors a lot. However, 24 percent of respondents said they placed trust in what celebrities say about vaccinations, which segued to autism activist Jenny McCarthy, who is known among the autism community for her opposition to vaccinations despite numerous studies refuting a link and the official retraction of the study that initiated the controversy (some of those stories are featured on this very site).

Dr. Gary Freed, one study author who is also the director of the child health evaluation and research unit at the University of Michigan, cautioned giving too much credit to celebrities who may not share the same background as researchers do. Freed was quoted saying there is a danger in the media of putting up celebrities as experts for any topic they have an opinion on, even though they have no expertise in immunizations or infectious diseases.

The second survey highlights a second obstacle that was explored by PBS’ Frontline documentary on vaccinations last year. 22 percent of those respondents said they were concerned about their child receiving too many vaccinations and the potential for damage to a child’s immune system (some vaccines, including flu shots, will use dead cells of the virus for the body’s immune system to absorb, allowing cells to fight off active versions of those viruses). Freed said that even if parents feel uneasy about their child getting poked often and early, that shouldn’t dissuade the notion of staying on schedule with vaccinations since many diseases they protect can be lethal for children and cause outbreaks for everyone else; Minnesota has been fighting a measles outbreak in recent weeks.

Jenifer Goodwin, the reporter who published the U.S. News study, faced a difficult proposition by covering two studies based on survey questions. One can be tricky enough for the audience to consume, as many stories that report poll figures will throw out a lot of statistics. Goodwin found an effective way to include both by finding one of the study authors and a second researcher who specializes in pediatric care for infectious diseases to spell out what the numbers mean. Not all writers do this when they recap poll numbers. Goodwin used her lead to highlight the biggest finding from the surveys, the overwhelming majority of parents who will follow the recommended vaccination schedule for their children, and quickly tied that to the ongoing controversy of the vaccine-autism link.

Some readers will read the first few paragraphs and then skim through the rest of the story, which is why print writers often employ the strategy Goodwin executes in her piece: the inverted pyramid. The inverted pyramid promotes placing the most important details of a story first, then include relevant but less necessary data in later paragraphs. While the web and various forms of blogging means writers don’t have to be as rigid with the format, the inverted pyramid remains a common form of print journalism and won’t stop being taught in workshops and classes that teach the craft.

Regarding the surveys, my biggest curiosity was the story reporting women and Hispanics being more likely to trust celebrities of the 24 percent that said they trusted them for vaccine information. Women cover just over half of the population and will have many backgrounds in their family lineage, while Hispanics are a growing segment of the American population that doesn’t rule out men believing what celebrities have to say. To gauge why the two responded the way they did would require a psychological expertise I don’t have, but we do see women more often for autism stories than men when it comes to the personal experience. Even the article from my last post on Holly Robinson-Peete spent the entire duration on her efforts, even though she and her husband are both involved in autism awareness. I’ve heard anecdotal suggestions that women are more enticing for autism stories because of their increased likelihood to display more volatility with emotional output, while men continue to live with the assumption they must be “tough guys.” Nothing is linear, of course, and families, researches, and other caretakers familiar with autism are well aware that support isn’t limited to the female gender.

There is potential for a follow-up story with the Hispanic community and autism (which would require a more complete perspective than their belief in celebrities), but I doubt the same regarding women, since that would leave many stations and papers in a state of self-critical research, and they’re not keen to highlighting trends they either caused or promoted that may not be beneficial for journalism itself.

Goodwin’s ability to guide us through two polls and not overwhelm us with numbers allows readers to feed off its notes, and also continues to suggest that the public is either growing tired of the vaccine-autism debate when evidence is clearly one-sided, taking more initiative to learn about all facets of autism, or both. Autism may not exist without a controversy for several years, but signs suggest the most visible issue in the last five years is slowly fading.

PBS vaccinates public with information

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PBS always find itself in the middle of controversies. Not of their own doing of course, but thanks to their flagship documentary program, Frontline, they often explore contemporary issues that aren’t ethically compromised since they’re not run by a for-profit conglomerate compared to most networks.

A few weeks ago, the network that coined “Viewers Like You” broadcast a Frontline episode titled “The Vaccine War.” Autism followers are already aware of the emotionally charged debate that started when Dr. Andrew Wakefield published his now discredited study that proposed a link between MMR vaccines and autism. But even autistics must share. While the autism debate gets about half of the allotted time for the show, PBS also examined the broader issue of alternative medicine. The core controversy Frontline discovered surrounding the vaccine debate mirror other forms of contemporary politics: A parent’s right to decide what’s best for his or her child versus doing what’s best for the community. Medical experts featured on the show explained that an irony may have sparked the debate: Vaccines were so effective at ridding the country of serious diseases (pertussis, chicken pox, polio) that younger parents and adults haven’t seen or heard about these diseases for years (If anyone’s doubting chicken pox, I still have scars from my infection as a kid). Much like the core issue of autism, when people don’t get firsthand exposure or information, the atmosphere is ripe for doubt or skepticism about the existence of such diseases. The result? A potential for a return of diseases once believed to be eradicated from the United States, such as a measles outbreak in San Diego that was quelled before it swelled.

When Frontline examined autism’s role in the vaccine controversy, they reported information that I already knew either through articles or previous blog posts here. For the sake of the community, they had to. The documentary did provide more detailed reports on the major studies that refuted a vaccine-autism link and looked into why the anti-vaccine movement is gaining steam. The conclusion? New media, which includes the very site I’m using to analyze the program, has created a vast amount of hype and misinformation that counters the dry, factual presentation of professional sites all too well. Personal anecdotes presented at rallies are often more emotionally charged, and are more likely to connect with the public than facts are. Jenny McCarthy is featured in this program, mixed with clips of a speech she gave at a rally protesting the high amount of vaccines given to children at a young age. The problem is compounded when you factor general polls that continue to highlight the public’s lack of trust with government and the increasing fragmentation of media that allows people to align themselves with outlets that match their own beliefs.

You know an issue is serious when the controversy is given the Frontline treatment. Although PBS doesn’t show up on the Nielsen ratings with the other networks, Frontline remains a solid barometer of what is affecting us in the present. Ironically, the new media that fragments our population also gives PBS a way to include extended interviews and reports on the topics discussed during an episode. The show may not be influential enough to completely shift current debates about autism regarding vaccines, but it presents us with an explanation of why the current environment exists. Sometimes understanding why is all that’s needed to move forward.

This marks the first time that Frontline has explored any facet of autism, and “The Vaccine War” could easily be a springboard that takes a closer look at the disability should PBS and WGBH decide to pursue it. Unfortunately, I’m not sure that the primary segments of the audience who should watch this program actually will. PBS doesn’t take sides, but anti-vaccine groups may believe the documentary throws a few punches at their opinions while touting the importance of stopping preventable diseases. The pro-vaccine side also stands to benefit since web pages aren’t enough anymore to provide information. Facts are nice, but if they’re not presented in an engaging form, web surfers will find another place to navigate. Frontline usually mixes factual and personal stories well, and the vaccine episode may provide a base for future researchers, reporters and documentary makers to find the next phase of autism and other issues where immunizations are involved.