The Autistic Journalist

Using words to explain the mind

Placing autistic brains “on the map”

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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.

 

San Diego police officer protects and serves

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Police officer Brian Herritt and his autistic son

In what was a timely follow-up to my analysis of the Toronto Sun story published earlier this week, Rebecca Woolington of The Oregonian brings us a story profiling a San Diego police officer hosting a four-hour training session for fellow police officers in Oregon’s Washington County. The training is far from standard, as Brian Herritt will be instructing police officers on how to respond to autistic children. The father of an autistic child himself, Herritt’s inspiration began when his son eloped at the age of three and he found himself relying on police to find him. While his son was discovered safely, Herritt noticed police may be unprepared to handle autistic children, his experience as a parent and law enforcement official created a dedication to teaching cops how to recognize signs of autism and deescalate situations. Conversely, he also wants to teach parents the mentality of police officers.

The Autism Society of Oregon is funding the training session, and one likely subject will be the potential of confusing symptoms of autism spectrum disorder (people talking to themselves or fixating on objects) with socially awkward behaviors that exhibit signs of drug and alcohol use. Herritt also explains how to best take autistic people into custody, what crimes they are most likely to commit or fall victim to, and to avoid assuming someone isn’t cooperating because they’re not responding to questions or orders (as explained many times on this site, some autistic people don’t communicate verbally).

Autistic people must follow the laws like everyone else, but after the ordeal I dissected in Toronto, Herritt’s mission is the perfect antidote to solve issues surrounding lack of awareness of autism in law enforcement. One training session won’t make police experts, but because Herritt is a fellow officer with an autistic child, his ability to communicate to both parents and cops is more effective. He understands the wishes of parents to accommodate autism spectrum disorder when approached and the rapid responses officers must sometimes make on or off-duty. As I mentioned in the last story, there will be increasing encounters between autistic people and police officers as the autism population grows and ages, which likely means Herritt won’t be the only cop to offer this training in the future.

There’s also a possibility of a follow-up story in The Oregonian as the training session doesn’t take place until next Wednesday, creating a set-up to report the response of attendants. Many are representatives of the sheriff’s office and local police departments in Oregon, so finding ties for the reading audience would not require much effort. Continuing to cover this story could also reveal Herritt’s future plans for these training sessions; the fact he is traveling to Oregon from the San Diego area brings forth the desire to promote a subset of knowledge to a group who most likely will need them on future assignments. Outside the region, other news editors and reporters may find citizens similar to Herritt who share his goal.

Woolington spends the first half of the story explaining Herritt’s background and his drive to educate other officers before switching to local sources for their reaction regarding his Oregon visit. Woolington indirectly highlights why autism training will matter to any kind of safety official in the long-term: parents already in the business are getting a first-hand experience with the disability.

Policing the integration of autistics

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Courtesy Ernest Doroszuk, Toronto Sun

Our latest story is part reporting, part editorial hailing from our neighbor to the north, Canada. Michele Mandel covers an incident at the Fairbank Memorial Day Care Centre where Toronto Police are under fire from autism advocacy groups for their July 28th handling of a nine-year-old boy with Asperger’s Syndrome who had to be physically restrained after throwing a tantrum. Police handcuffed the boy for five minutes before the mobile crisis intervention team arrived and calmed him down. While autism groups protest that less drastic restraint measures could have been employed, police say the boy was a danger to himself and waiting for the crisis team could have posed a safety hazard.

The boy blamed his tantrum on being bullied during the lunch hour. Mandel quoted him saying he holds his mother’s hand whenever he sees a cop car. Naturally, parents of autistic children are furious, at least according to Autism Ontario. The executive director says they offer training for law enforcement on handling people with mental disabilities, but few have taken advantage of the program unlike their colleagues in Ottawa.

I have some question on the date’s accuracy in the published article. If the incident did occur on July 28th, having an article published now would be horrendously ill-timed. There is a possibility the story has a typo and the incident happened on August 28th, which would better justify releasing the story on its publication date (August 30th). With parents as emotionally charged as they are, notwithstanding parents of autistic children, waiting an entire month before expressing outrage over a controversial situation makes little sense.

Regarding the story itself, law enforcement is almost always a hotbed when it comes to controversy. This doesn’t suggest an antagonistic relationship between journalists and police (you need to establish a positive connection if assigned to a crime beat), but material that suggests public service officials aren’t performing their job description makes for saucy news material. Generally, this controversy arises when police are seen abusing their role. In Mandel’s story, the argument is police not considering the well-being of the child with Asperger’s Syndrome who had to be restrained. When pursuing an event as it’s occurring, police have to be prepared for rapid responses to a multitude of situations to protect themselves and/or the people they intervene. The “gray area” illuminates how people who are trained to keep communities safe can adapt to the autism spectrum, as their emotional output doesn’t fall within expected norms. This story may spur Toronto’s law enforcement to seek more training, or lead to further coverage on public readiness to handle a population prone to mental outbursts.

On the story itself, I’m not familiar with the ethical standards of Canadian journalism, but the reporter appears to side with autism organizations and suggesting the response was mishandled. Mandel uses strong words and questions why less forceful measures weren’t used to begin with, creating the impression that Toronto police were the “bad guys” in the case. The discussion shouldn’t be about who’s right or wrong, but instead included for the ultimate concern of how an increasing number of autistic people throughout the world can be approached.

Written by TheSportsBrain

August 31, 2011 at 11:36 am

iLove the iPad (and always will)

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Courtesy Tim McCarthy, Asbury Park Press

Alesha Williams Boyd of the Asbury Park Press is the latest reporter to uncover the autism community’s love affair with Apple’s iPad computers. Several New Jersey school districts are purchasing iPads for special needs students for the upcoming 2011-12 school year, with a private school requiring families of students to purchase the mobile computers.

The mobility, aesthetics and the ability to install apps to personalize each system are a few reasons why iPads are such a hit for the mentally disabled community. The director of special services at New Jersey’s Marlboro Public School district credits Apple’s product for drawing autistic kids out from themselves. The iPad’s ability to provide a means of communication via screen images for autistic children is well-documented, but thanks to the app market, school districts are also using iPads to encourage autistic people to make eye contact. Even if such applications have a price tag (according to the article, some cost as much as $200), many still consider the iPad a marvel with its $500 list price compared to bulkier, bigger, more complicated devices that can reach four figures.

What about students with other disabilities? Boyd covers that segment in the first few paragraphs, reporting applications allowing students to organize their activities, thoughts and assignments (a boon for autistic children who adhere to routine), and apps that can vocalize text or translate the spoken word into text. Not enough? Settings on some apps can be adjusted to the type of touch students produce, and can also be rigged to challenge students to exercise their motor skills with different forms of touch.

I doubt this will be the last time iPad and autism blend in the same article, but future media coverage could become stagnant if future versions of the iPad aren’t considered revolutionary for the disabled population. Coupled with similar abilities from the iPhone and iPod Touch, Apple’s sister products, stories on the benefits of these devices will find difficulty creating new flavors for an audience that follows autism news via the Internet, where geographical boundaries are neutralized. However, the primary reason for future media coverage that could repeat itself is all about the audience. Similar stories to find a place on this blog originated from Houston and the Twin Cities area, so to assume New Jersey residents would know of those stories would be unwise. While this means using a search engine for stories on autism may produce carbon-copies published in different outlets, local organizations aren’t worried about similar coverage outside their market.

However, Boyd does show her readers the iPad’s potential outside of the autism community, where most media coverage in this topic is focused. Truthfully, the advantages of the iPad aren’t any major revelation these days, but Boyd does answer the call for communities who may feel overshadowed by autism coverage. Examining the benefits is useful beyond informing the audience for Apple’s sake. Since Apple releases new editions of their products on an annual basis, viewing its impact across multiple facets may assist them with improvements for future editions through app technology or hardware components.

I had to learn to communicate through more traditional computers since touch-based technology was far from wide use growing up. I can’t say I’m more or less fluent with computers than autistic kids who use iPads are, but I can predict school districts will eventually saturate their special-needs students with iPads when budgets and resources allow for the opportunity, and you can bet I’ll follow the news coverage generated from the implementation.

Written by TheSportsBrain

August 23, 2011 at 1:41 pm

West coast no refuge for unvaccinated

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Last year, I explored a Frontline documentary on vaccinations, and the traveling crew visited a Washington city to hear from parents who opted out of vaccinations. The Seattle Times via the Associated Press published a spiritual follow-up that studies Washington kindergartners from the 2009-10 school year, and discovered that six percent of students were missing at least one vaccine that is required in virtually all other states. The most commonly skipped vaccine was chicken pox (a vaccine that could have saved me an inconvenience, I carry scars from my bout as a child).

The number of school children fully vaccinated has steadily declined in Washington since 1997. A state law enacted in July is aiming to close a loophole that allowed parents to avoid providing proof of vaccination at schools. Accordingly, diseases prevented by vaccines are also increasing, with over 600 cases of whooping cough reported in Washington last year, more than double the 2009 rate. Nothing has changed about the concerns of vaccines, with apprehensive individuals pointing to data from the National Vaccine Injury compensation showing an estimated $2 billion has been paid out in cases claiming problems associated with vaccines. Scientists counter that it’s hard to prove cause and effect with the millions of vaccinated individuals with no long-term health problems, but doubt remains with some parents arguing doctors can’t prove vaccinations didn’t influence an autism diagnosis.

The article is simply the latest chapter in the vaccine debate I’ve explored heavily on this blog, but the Washington saga underscores the shift in people not fully vaccinated from the economically disadvantaged to well-educated parents who do their own research, which isn’t necessarily conclusive or even unbiased. The Frontline episode, “The Vaccine War,” explained how celebrities and other notable names can drive beliefs even without scientific backing, with Jenny McCarthy’s views on autism making headlines a few years ago (her book details how she “rescued” her son from the disorder). Worth repeating, vaccines are so effective at stopping previously perilous diseases that many of them have resurfaced only recently as a result of decreasing immunization rates. Parents have more time to be “nit-picky,” which means more opportunities to develop emotionally charged theories that carry little scientific weight. However, with feelings and emotions usually a stronger bond in the human psyche than facts and figures, concerns about vaccine safety will likely continue to remain difficult, if not impossible, to immunize.

Gauging the tipping point is difficult to ascertain with regard to time and intervention, as Washington’s state law now requires parents to meet with medical providers and provide proof a consultation took place. I doubt anyone in the scientific community is wishing for an outbreak to convince doubters with potential implications to the public’s health and media coverage, but general reporting on the vaccine controversy is growing to a tired cycle of studies disproving a link and worried parents whose beliefs can interfere with knowledge. I’ll continue to analyze the relation given its prevalence in mainstream media, but a fresh avenue could be traveled by examining attempts to reach out to critics beyond rehashing the benefits to reporters seeking to fill space or time in the news circuit.

Broadway experiment? Hakuna Matata

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Courtesy Las Vegas News Bureau

Returning to our dear friends at the Associated Press, their articles aren’t always found syndicated on other news sites. Take this story from AP drama writer Mark Kennedy, who reported on Broadway participating in an experiment, with children on the autism spectrum as test subjects. Specifically, the Theatre Development Fund announced it will present an autism-friendly performance of The Lion King, a highly successful Broadway adaptation of the 1994 Disney film of the same name. Organizers are gauging if this move should be replicated elsewhere.

To accommodate the increased sensitivity of the audience who will watch the October 2nd show at Minskoff Theatre, experts identified scenes where lights or sounds needed to be toned down, although no decrease was higher than 30 percent of levels in regular performances. Seven changes were made in all, and three quiet areas with beanbags and coloring books, staffed by autism experts, will be available to children whose sensory inputs are overwhelmed. A 16-page downloadable guide at the fund’s website informs children what to expect and options anticipating potential moments of sensory overload. An autism advocate and author is quoted saying even if this experiment fails, either this group or another organization can apply the effects of this event to make adjustments for a future autism outreach event.

Last year, I discussed two articles on movie theaters offering autism-friendly screenings, so to hear of Broadway taking part in the outreach effort is little surprise to me. The only serious question for autism-friendly events is a matter of when they will happen, versus 10 years ago where the question centered around if. I’m not sure we’ll see “autism-friendly” sporting events (which may have kept my head from ringing covering a Minnesota Lynx game in Chicago, where Allstate Arena’s acoustics amplify sound far greater than Target Center) given the size of sports stadiums, even with a rapid increase of autistics in the population. However, the Theatre Development Fund’s experiment does reinforce the course change regarding autistic people as experts and caregivers alike search for ways to integrate a population segment that prefers to isolate themselves. Personally, I can’t recall any moments where I fell victim to sensory overload at movie theaters or theatrical production. I even braved the stage myself in high school when I donned the character of Ali Hakim for the musical Oklahoma! However, I am only one man and an oddity myself among the autism community, rendering my ability to represent the group useless in this capacity.

For those wondering why I haven’t dissected the article, the reason is the format of Associated Press stories. When your organization is behind the stylebook bought and used by aspiring college journalists and professionals seeking to maintain high standards, there isn’t much to discuss with Kennedy’s format of the story, although Kennedy shows some playfulness with the lead given Broadway’s venture in unproven territory. He uses a variety of sources related to the show and autism spectrum, speaking with a member of the Theatre Development Fund, the author I previously referenced, and an Autism Speaks representative. Exploring the changes to the specifically tailored performance was expected in this story, but readers also discover the speed of dissemination as most seats for the matinee performance have been snatched up.

If any of you fear about entertainment options for autistic people, whether or not this show succeeds, you may find yourself saying “Hakuna Matata,” a Swahili phrase meaning “There are no worries.” Oh, it’s also a song title from a popular Disney movie.

Autism dashes another victim’s optimism

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Ben Barnhard, courtesy Associated Press

I always stress that autism itself cannot kill its inhabitants directly, but the stress and frustration that builds with raising children on the spectrum can lead caregivers to murder, as was the case with Margaret Jensvold, who killed her 13-year-old autistic son and then herself in a story published by Eric Tucker of the Associated Press and syndicated to Huffington Post. A dark irony in this instance was Jensvold’s occupation of a psychiatrist.

Police found a note along with their bodies earlier this month, with Jensvold saying she couldn’t deal with the Maryland school system and that debt was strangling her. Family members said Jensvold was increasingly strained by financial pressure and fights with the Montgomery County public school system as they refused to cover tuition costs for Ben Barnhard to attend a private school for special-needs students. Jensvold didn’t want to return her son to a public school district where family members said she felt harshly judged and marginalized while Ben had struggled.

The note added that Jensvold killed her son so he wouldn’t experience of the trauma of losing her mother, with Jensvold’s sister noting she wouldn’t believe Barnhard would mentally recover from such an event. Barnhard spent nine months at a weight-loss boarding school after he topped the scales at 275 pounds, and he dropped more than 100 pounds when he finished his time there, gaining new-found optimism about school and being a kid again. The day after Jensvold killed herself and Barnhard, a check came in the mail from her sister’s mother for $10,000 toward tuition at the private school she was hoping to enroll Barnhard in.

This is the third article I have dissected on my blog where an autistic child was killed by his or her parents, and recurring themes are all too similar: parents are unable to handle the challenges of raising children whose development doesn’t align with neurotypical kids, with their emotional stress exacerbated by the feeling of isolation from the community. Unfortunately, this leads parents whose conflict management skills are vulnerable to taking the life of the children they gave birth to. Imagine how Jensvold’s circumstances could have changed had she not become mentally unstable and held out for at least an extra day, where she would have learned that support was coming for her son.

Covering a story like this is not much easier than it was for the sources to speak about what happened (Jensvold’s sister and Barnhard’s father were interviewed). Since Tucker is an Associated Press employee, his story follows a specific format that’s about as hard-core as you can get with journalism. Opinions from authors of AP articles are non-existent, and since AP stories are often distributed throughout news outlets across the country, their writers will craft the story for a national audience as they cannot predict where and when their stories will appear online or in print.

Even with the guidelines, there still is room for some creative flow in AP stories, as Tucker leads with Ben’s achievement at the weight-loss boarding school he attended after enduring years of taunting from classmates. Similar to the mission plan of the Syfy series Alphas, Tucker sought to communicate qualities to the audience that highlight how Ben’s previous weight problems and autism spectrum disorder had little effect on his interests or capacity for autism. Midway through the story, he does the same for his mother. While it won’t change the fact that Ben’s mother ultimately killed him, Tucker does his part to humanize the story’s subjects to increase audience accessibility.

Instances of parents killing autistic children are rare, but the emotional weight of murder often means such deaths will likely find their way to online media. Autistic children shouldn’t live in fear of being killed by their parents, but Tucker explains through his reporting why murder/suicide is a poor solution. Tucker and the Associated Press won’t make a call to action themselves, but perhaps readers who know of parents traveling through an environment similar to Jensvold’s will pick up the cue.