The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘autistic

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.

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I was here first!

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Photo by Daniel Bock, The Miami Herald

In another first for The Autistic Journalist, I will be analyzing two reporters covering the same story after a Google News search uncovered another article on Barbara Delgado’s Miami Dance Project summer camp at the New Image Dance Studio. As I mentioned in my last post, Delgado is certified as an autism movement therapist. However, we get a closer examination via Nadege Green of The Miami Herald that NBC Miami couldn’t allocate resources for.

Green’s story is more descriptive, using words in place of action shots in Diana Gonzalez’s version. We learn more about the nine students enrolled in Delgado’s autism therapy dance class and the “curriculum” students take to address their autism spectrum disorder. One student, legally an adult, often leads class in combinations and spends part of her day in another studio with dancers who aren’t autistic.

We learn the students enjoy the classes enough to not notice the “therapy” part. In fact, dancing is only part of the day’s activities in Delgado’s class. Yoga, body strengthening exercises, crafts and activities to improve written and oral skills are also incorporated (two of them can assist in maximizing dancing ability, while the other two help maximize social ability).

Green also shared the origin of Delgado’s journey from certification to starting an autism dance class: Delgado offered a free autism movement therapy dance class on Sundays before starting the summer program, citing a desire to create a space where autistic kids feel no different from their neurotypical counterparts. Hugs and high-fives are shared frequently to help foster a supportive environment. Ultimately, her goal is to start a professional dance company for autistic dancers.

Green can share a lot more and employ some novel storytelling techniques because she had a larger space to report her story than Gonzalez. Unless assigned column space is quite small, written articles will generally have more detail than television stories when covering the same topic. In particular, print journalism is primarily about word choice; feature stories seek to give readers a sense of visualization by observing details about the subject being covered. Photos can supplement this form of storytelling, especially on the Internet where limits are lifted. However, the story’s effectiveness solely rests on the writer, and Green handles the task well by profiling multiple students involved from start to finish. Whether the students speak themselves or parents speak for the less verbal participants, the quotes published in the story suggest Green asked the students why the joined the program and what they like about it, reinforcing the summer camp’s idea of not pointing out the supplementary mission plans of the dance class.

While Gonzalez’s electronic version highlights the “non-traditional” form of autism intervention on its own, Green’s story spells out how the program does more to assist autistic children beyond improving their dance skills. Readers considering joining the program themselves may now understand other forms of therapy are not sacrificed with the class.

A curious element to the story itself is when Green began reporting on Delgado’s dance class. The Miami Herald story was published the same day as NBC Miami’s was, although NBC Miami posted their version online a few hours before The Miami Herald, suggesting the paper either submitted the story for publication in its traditional form either Monday or Tuesday of this week. Given the time frame, it’s very unlikely that either journalist picked up the story by getting hold of the other’s beforehand, and there’s usually no rivalry between a print and television news outlet. How the class was discovered may not be known, but with two reporters discussing the same class, the reporters could have picked up the story through a press release or a mutual contact that happened to know both Gonzalez and Green or their superiors.

Green’s advantages in reporting for The Miami Herald certainly doesn’t mean written articles are superior to television stories. The two stories only illustrate the differences between the two media. I wouldn’t expect additional stories on Delgado’s autism movement therapy sessions with the summer class wrapping up on Friday, but other reporters in Miami and beyond may draw inspiration to find “new” forms of autistic intervention to dissect for the audience. Dancing may not be the magic solution, but Delgado’s contributions may redefine how to treat autistic children.

I’m pregnant with an autistic child

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Obviously, that statement is far away from entering the lexicon of childbirth, and unless I’m asked to re-enact a Cosby Show episode where Bill dreams most of the show’s male characters are pregnant (he gave birth to a two-liter bottle of Sunkist), I’ll be physically unable to claim such a thing.

However, health reporter Jenifer Goodwin returns to decipher more studies, with the story stripped in several outlets, including USA Today. Four studies are dissected by Goodwin and the findings may reveal clues on the likelihood of giving birth to an autistic child. One study reveals that catching a fever during pregnancy could increase the risk of autism in children. Another study suggests mothers who have diabetes, high blood pressure, or obesity may also carry an increased risk of autism in their offspring. Three studies examined data from 1,000 kids participating in the Childhood Autism Risks and Genetic Environment study, whose acronym is shortened to CHARGE.

In a weighted analysis, the first study suggesting a relation between fever and autism reported that mothers of autistic children were twice as likely to report a fever during pregnancy than mothers of children without autism. Risks were highest when mothers reported a fever during the second trimester of pregnancy. Researchers behind the study those findings as preliminary and no statistical significance was found when sampling weights were omitted.

A second study found mother of autistic children were more likely to have elevated levels of certain inflammatory markers. A third, which drew from CHARGE data, mothers who had any combination of type 2 or gestational diabetes, chronic hypertension, or pre-pregnancy obesity were significantly more likely to give birth to children with autism or another developmental delay. The fourth and final study examined Cesarean-section births and autism using CHARGE data and found no statistically significant link between birthing method and autism. The research was presented in a press conference at the International Meeting for Autism Research in San Diego, but they have yet to undergo the scrutiny of research published in peer-reviewed medical journals. A study co-author who was interviewed for the story did say many factors were modifiable, so if they are confirmed as autism risk factors, they could be altered.

The article should not be a cause for panic as findings are in the preliminary stage and several health factors like diabetes and obesity carry more dire health risks than a potential autism diagnosis in children. While placing a time frame on when the factors described in the array of studies presented at the International Meeting for Autism Research would be confirmed isn’t the most productive choice with the slow-and-steady nature of study development, a confirmation would be significant. Coupled with the continuous attention given to the dangers of obesity and diabetes, mainstream news outlets would waste no time hyping or even saturating media with such a link. Even if a link is confirmed should these studies exit the preliminary stage, I doubt a significant impact would occur with personal health, with obesity on the rise and a lack of incentive, initiative and resources blocking efforts to combat the problem.

Jenifer Goodwin and articles on studies are quite common this year; this is the third story published by Goodwin that I’ve discussed in 2011. She sorted out a lot of data in a facet of journalism notorious for its difficulty to communicate meaning. Given the story’s nature, fitting results from four studies wasn’t too difficult though, as Goodwin highlighted each piece of data and offered a brief expansion to explain its significance. She tempers the findings by not only including the caution from researchers on the preliminary state of data, but ending the article explaining why such data should be viewed skeptically until more research is conducted.

I don’t expect Goodwin to tackle four studies in one article on a regular basis as the research was presented at a significant event. Such gatherings are prime for swarms of data, analysis and conclusions in an attempt to decipher the mystery of autism. Generally, one study will be spelled out per article, as most are published in peer-reviewed medical journals that are distributed regularly. I don’t foresee supplementary coverage from journalists as the information is still speculative, but the studies may lead to additional examinations on a possible link, either disputing what was found or reinforcing conclusions. Those future developments will be the focus of Goodwin and other news editors as this story evolves.

Autistic kids can shout “Hallelujah”

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No three-month hiatus this time, although I’m surprised at the number of visitors who have found the site since my last post.

And the number of young autistic visitors for church services is also on the rise. Kelly Heyboer of USA Today published a story late last month highlighting increased acceptance of autistic parishioners in church services by illuminating efforts in New Jersey. The director of pastoral ministry with persons with disabilities for the Archdiocese of Newark said despite the heart and theology Christian churches offer to patrons, not all who attend worship live the meaning. The director runs the “Attends Mass” program that offers training for religious educators and support groups for parents, while a few churches host an event similar to sensory-friendly screenings from movie theaters. Called Inclusive Family Masses, autistic children can be loud or disruptive with no chance of being escorted out of church.

Caldwell College and its campus chapel also actively engages in integrating autistic children with Christ, where a new Center for Autism and Applied Behavioral Analysis just opened. A Caldwell graduate student was featured by Heyboer for her involvement in the “Mass mentors” program. A dozen New Jersey children have buddied up with mentors who train them on proper behavior while attending Mass. The process, the subject of a doctoral dissertation by Caldwell’s graduate student, begins by bringing children to the last five minutes of Mass and slowly adapting them to the entire service, called “backward chaining.” The executive director for Caldwell’s autism center says “backward chaining” is applicable to any religious following.

Heyboer bookends her story with the “backward chaining” approach, even though readers aren’t aware of the term until the next-to-last paragraph. Her first two paragraphs highlight the method’s effectiveness with an autistic boy who spent months of training to manage Mass, while the end of the story spells out the steps I listed earlier. No quotes are given to non-scholarly sources, not even from the mother and son featured in the lead, with the expected angle of struggling with church placed with a mother of an autistic teen who also is a task force member of the National Catholic Partnership on Disability. While her experience may validate the obstacles she battled with bringing her autistic son to church, readers don’t get much perspective on the response from beneficiaries of the services featured in Heyboer’s article. The premise would likely be similar, but getting a word with people not directly involved in efforts can provide a more unbiased analysis on the success rate of implemented programs.

Heyboer’s story is a far cry from the controversy generated three years ago when a rural Minnesota church filed a restraining order banning a 13-year-old autistic boy because of loud outbursts (and that story was played heavily in Minnesota media as such a move was unprecedented to journalists). With Minnesota’s growing ties to autism in the Somali population, where Islam is the predominant religious practice, I wouldn’t be surprised if a religious leader or two from that community picks up this story and applies the “backward chaining” method discussed at the end of Heyboer’s article. The struggles families with autism face at their place of worship are already documented in Twin Cities media, which included a discussion of how far is too far when balancing accessibility and safety. Not seeing a similar story in the Twin Cities may sound surprising when they were briefly the center for autism and religion at first, but since several methods in Heyboer’s story are relatively new, not even the speed of today’s news will ring bells in the brains of news producers and editors immediately.

Regardless of the denomination (the story focused on Catholics), big crowds, loud music, and long periods of silence or monotony can overwhelm the senses. Combine nerves of parents already cautious about bringing their autistic children in public places, and not even the teachings of religious leaders can prevent isolation. Such concerns have led some priests and parishioners to discourage autistic children from attending church service. Heyboer’s story suggests that trend is reversing. No matter who people worship, I imagine families with autistic children will have their prayers answered, if not already addressed.

Temple Grandin, promoter of strength

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Temple Grandin, right, signs autographs and chats with two spectators following a lecture at SUNY Ulster. Photo by Kelly Dornicik

Autism’s longest-recognized advocate made another splash on Friday at SUNY Ulster in New York. Temple Grandin, who earned the respect of her professional peers and the admiration of a nation after her designs for cattle-handling facilities were widely adopted, promoted pushing autistic children out of their shells during her speech. Michael Novinson of the Times Herald-Record was there to cover her appearance.

Grandin has consistently emphasized teaching basic manners and social skills for autistic children, as well as channeling their interests as a parlay for employable skills. Her firsthand experience is referred to by supporters as living validation that a “marketing strategy” is beneficial. While Grandin had difficulty integrating with her peers on a social level in agriculture engineering classes, they quickly latched on when she presented her sketches (although she noted encountering a few skeptics in her first book, Thinking in Pictures). Grandin also spoke about the increasing prevalence of medicating autistic children. She believes exercise and dietary changes should be implemented first to address behavioral issues in autistic children, and medication only if previous methods are unsuccessful.

Compared to other stories I’ve discussed in the last week, Novinson’s article is a simple event coverage story. Readers who know of Temple Grandin already have some familiarity with her life story, but her name recognition continues to attract press coverage from local reporters when she visits their coverage area. Novinson only quotes Grandin from her speech and bookends the story with two sources who weren’t given quotes, but still displayed the mentally stimulating effect Grandin carries as a speaker. A similar approach is seen with Novinson’s short add-on about autism and medication.

Speeches and press conferences possess the fluidity of water; no two events run by separate organizers will be alike in their approach. While reporters can receive press releases or schedules revealing the event’s course and time frame, they have to be prepared to incorporate speakers in whatever capacity they offer. There may not have been a one-on-one with Grandin scheduled out of personal discomfort, time constraints, or another reason totally unrelated to either theory. Ideally, most journalists will attempt to conduct a one-on-one before or after a lecture, and if that plan is unsuccessful, they’ll rely on the speech itself to guide the story.

Covering Grandin is a challenge in itself; she’s appeared in virtually all forms of storytelling through her own books, a documentary, TV appearances and an HBO film with Claire Danes assuming her character. The best tip for reporters is not to stress over one-upping others who filed reports on Grandin, but recognize the significance of the story she creates.

Written by TheSportsBrain

April 24, 2011 at 10:58 am

Adventuring with autistic kids

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The Children’s Museum of La Crosse has found a way to incorporate autistic children, as Eau Claire NBC affiliate WEAU highlights the museum’s new Adventure Packs designed by the museum and The Chileda Institue, a program that assists people with developmental disabilities. While Adventure Packs are available to anyone, families with autistic children receive priority. The backpack includes tools individualized for different exhibits, allowing autistic children to plan their museum visit. Earmuffs are included to combat sound sensitivity. The backpacks are one element Chileda is embracing, as they have plans to train employees on interacting with autistic people. The Children’s Museum of La Crosse has already received a warm response, with other museums requesting similar kits.

Museums with the young in mind can be overwhelming from a sensory perspective. Sounds, colors, images, and even smells can cause sensory inputs to overload. Sometimes, predicting what will cause an overload is no more accurate than a coin flip unless autistic people know what’s coming. The brainstorming of the Children’s Museum of La Crosse and Chileda likely factored autistic children’s preferences for advance notice, as the backpacks offer clues, if not the answers themselves, to what each exhibit projects. I have yet to hear of a similar program with Twin Cities local museums, but since the state borders Wisconsin, seeing the concept exported west is not a stretch to imagine.

The story may not appear as noteworthy compared to others I’ve discussed this week, especially for an accessibility item in a place that generally factors passages for many disabilities. The market size is noticeably smaller than my hometown Twin Cities market, even though the station branches out to Eau Claire residents. With smaller cities and fewer people to cover, notable places with even subtle additional features are more likely to be picked up by local reporters if the resources allow them to pursue such leads. The Adventure Pack story is no less encouraging for the autism community than Holly Robinson Peete’s weekly features on The Talk this month; the target audience just happens to be smaller. Stations in larger markets wouldn’t necessarily ignore such a feature in their coverage area, but the perks of working in larger population zones allow them to be more selective with the stories they report.

However, smaller markets have opportunities for big impacts (an older colleague’s story on SPAM’s 50th anniversary in 1987 was picked up by ABC after originally running on KAAL in the Austin-Albert Lea market). The ability to spread news outside the coverage zone gives reporters in big markets an opportunity to borrow from the little guys. Even if we don’t see a swath of accommodations for autistic visitors of museums and elsewhere, the citizens of La Crosse will know that even autistic minds can grow without hindrance inside their own children’s museum.

Call him many things, except the R-word

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Photo by Bev Horne, Chicago Daily Herald

The R-word, standing for retarded, has recently joined campaigns to end other incorrect uses of words demeaning to certain groups. In the same vain as using “gay” to describe something unfair, “retarded” has gone through a desensitizing process in 21st century culture (did we all forget about “suck?”).

Kristy Kennedy of the Chicago Daily Herald profiled one autistic senior determined to bring us back to the days of “sucks” and “stinks.” Jordan Schubert, who will be graduating from Neuqua Valley High School soon, points his breakthrough moment to 6th grade, when he and his sixth-grade basketball won a Special Olympics gold medal. Schubert’s public speaking skills, not a common trait among autistic people, grant him speaking opportunities with groups as part of the Special Olympics campaign to end the “R-word.” For good measure, Schubert and his Special Olympics co-host from a youth summit last summer created a soccer league that teams up disabled and non-disabled students.

Schubert himself isn’t surprised the word “retarded” is in contemporary vocabulary; his peers in middle school used the word to describe anyone or anything stupid. So he decided to speak to younger kids before they start using “retarded.” Schubert’s also changing perceptions of the autism spectrum with his on-camera poise; he produces stand up reports for the high school sports program and submits stories for the Neuqua Valley’s weekly news program. Fluent in Spanish and college-bound, his dream is becoming a foreign language teacher for students with special needs.

Quite a track record for a sports enthusiast. Schubert’s interests and ability to integrate with the mainstream may, ironically, explain why he’ll hear “retarded” being used among his peers. He’s quick to point out the negative connotation behind the word, and his campaign has won support from fellow students. The big issue with demeaning words that are incorrectly used in sentences is simply a numbers problem. Although there are no exact figures for the GLBT or disabled population, by percentage, their representation is small. With low odds of constant communication with either of these groups, using “gay” or “retarded” usually carries the same repercussion experienced when YouTube users post hateful comments on videos: little or none. Schubert’s peers understand what’s going on because they interact with him on a daily basis, likely allowing them to relate on the feelings he and other disabled people experience when the word “retarded” is uttered. Without that exposure, incentive to educate the self drops, increasing the likelihood of grammatically incorrect sentences.

Kennedy quotes many sources to tell the story of one, a technique not often seen in profiles of autistic people (and sometimes other people), but had she not sought insight from his peers, coaches and instructors, there’s a chance she wouldn’t have learned all of Schubert’s pursuits. She seeks to balance the leadership skills Schubert beams to his equals with his personal interests to remind the audience he’s still a teen. For an added touch, Kennedy ties in Schubert’s quest with legislative action in Illinois, where the state Senate passed a bill that would replace “mental retardation” with “intellectual disability” in state statutes. Although such a story will have autism communities beaming themselves, Kennedy’s story communicates that Schubert isn’t all that different, even if he carries a more specific label.

His developmental key is also no different than most others who find professional success: they discover their passions early. Schubert’s was sports, playing baseball, basketball and football. You’ll also find him cheering on NASCAR, the Chicago Bulls and Chicago Bears. As long as there’s a supportive environment, kids will latch on and build off their interests. For parents of autistic children, their strategy should be no different.

I wouldn’t be surprised to see Schubert become a vocalist for the disabled community with the contributions he’s already provided. Journalists can take note of this story as well, as Kennedy points out autism, as with other disabilities, doesn’t necessarily define character or ability.