The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘Autism Speaks

Holly Robinson Peete’s autism “talk”

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Criminal Minds star Joe Mantegna, Rodney Peete and Holly Robinson Peete host a roundtable during The Talk's weekly series promoting autism awareness

Holly Robinson Peete calls herself an autism supermommy on her Twitter account, and following this month’s insight on autism on The Talk, a CBS show she co-hosts, her followers may envision her with a cape. Peete hosted autism awareness segments for four weeks on Fridays, bringing the audience up to speed on the disability while sharing the stories of her own endeavors and the journeys of others.

You won’t see Peete’s autistic son, RJ, distract her from her hosting duties on The Talk. Based on the segments aired in the month of April, the only interruptions were joyful expressions as she sought to debunk the stereotype of autistic people casting a societal burden. You can watch all of Peete’s autism awareness segments on YouTube or The Talk’s own website. Her clips aren’t placed in a subcategory, but that won’t stop me from critiquing Peete’s voyage into mystery.

Week 1 was clearly targeted for any “cave dwellers” left who never heard of autism or understood its meaning. Since Holly carries a personal connection, the series began with a two-part package on RJ and the implication his diagnosis had for Holly and her husband, former NFL quarterback Rodney. The package was designed to carry an emotional weight, supplemented by stock music that would change in tone along with the story. Holly’s celebrity status brought no change in outlook with her son following his 2000 diagnosis, with the pediatrician on hand defining RJ’s autism as a roadblock from expected milestone’s in a child’s lifetime. A chat among the hosts followed, where Holly reveals that putting her son on a wheat and dairy-free diet helped his condition (I’ll touch on this later). She then updates the audience on RJ’s condition, where he recites an award speech, and mentions the HollyRod Foundation started by her and her husband.

Holly brought her friend and Autism Speaks member Peter Bell to provide an oversight on autism, its symptoms and the world of confusion a diagnosis often forces its inhabitants to guide through. Bell then promoted Autism Speaks’ “Light it Blue” campaign (a play off their blue puzzle piece logo, itself a nod to the multi-colored puzzle pieces that represent autism).

Jimmie Smith appears on The Talk with his two children

Week 2 shifted the spotlight from Holly to her husband, and by extension, fathers of autistic children. Often the “forgotten” parents in the conquest to understand the spectrum (magnified by the amount of attention to mothers in the very medium Holly used to promote autism awareness), Holly brought her husband and Criminal Minds star Joe Mantegna to the set as visual reminders. Rodney shared his transition from denial to advocacy with RJ and the strain his conversion length had on his marriage. Mantegna, father of a now 23-year-old autistic daughter, guided viewers through his search to find a school in Chicago that could adapt with an autistic first-grader in a social environment that didn’t foster openness on differences. Jimme Smith provided the non-celebrity viewpoint, which wasn’t all that different from his more recognizable peers, except he’s divorced and raising both his kids as a single father. Holly awarded Smith an iPad 2, known for helping autistic people communicate more easily, and a vacation to Disney World in recognition of his effort to raise his kids.

Week 3’s focus was teens who defied the common stereotypes of young autistic people. Holly invited Carly Fleischmann, a non-verbal Canadian who uses a computer and voice recognition software to communicate with vocal linguists. While Fleischmann made a live appearance at the set, her interview was pre-taped and edited for time because she can’t control her symptoms as easily as other spectrum members. Fleischmann notes the lack of control and inability to speak as primary factors for harsh judgments, but that hasn’t deterred her fan base of over 12,000 Twitter followers. Winfred Cooper, a verbal autistic, also appeared on the show for his 67-yard touchdown catch on his high school football team. Winfred’s path to higher education after graduating with honors inspired his father to get his teaching degree while serving as Winfred’s college aid.

Week 4 brought back a familiar face: Jason McElwain, who I ironically noted was fading from public attention five years after his 20-point game as a high school senior won the admiration of the country. His interview was taped in advance and edited rather short (with my TV experience, I can spot clear edits as broadcast shows make room for their commercial time), but there was just enough space for him to tell the audience he coaches at Greece Athena High School and the 17U East Coast Fusion AAU team, which he hopes will parlay to a varsity high school or college coaching position. Peter Bell returns to bookend the series, offering tips on helping autistic people adapt with mainstream society.

Overall, the editors who squeeze The Talk‘s raw footage to 38 minutes per broadcast almost served as documentary producers, fishing for what was considered the best material to air on a show still aiming to stand out in the talk show genre. Granted, virtually any topic could be procured beyond the time allotted, but with autism’s complex structure, there’s a plausible argument on the first chapter of the autism awareness series not maximizing its usefulness inside a short time frame. Even in more in-depth profiles, few glimpses were publicized. Mantegna’s story was brief, where only his story on finding a supportive school for his daughter was aired. Winfred Cooper’s package detailed his achievements up to his interview, but we didn’t hear his own thoughts on college and his ascension plans after higher education. McElwain’s mini-window was the biggest surprise since he was autism’s biggest celebrity a few years ago. With no additional material available, ascertaining sound bites edited out of the original broadcast is impossible outside of the show’s production staff. Perhaps nothing of value was said, or new avenues were left unexplored. Unfortunately, such thoughts will remain only a curiosity.

Viewers who watched all four installments may have noticed an element to autism often overlooked by most mainstream press coverage, and that piece of the puzzle starts with Holly. No one featured on the autism awareness segments dramatized this, but Holly’s African-American heritage within her family should serve a sign to other families and reporters about autism’s lack of discrimination. Beyond Holly and Rodney, two African-American families were featured in her exploration. Virtually every mainstream story I have read or watched profiling families living with autism featured Caucasians. Their struggles aren’t lower in difficulty, but autism can manifest in anyone of any lineage. Autism and race are rarely intertwined in public, and I doubt they will as the mixture would overshadow efforts to promote awareness in both categories, but journalists should note that everyone can suffer from the mystifying disability.

Holly’s bucking of mainstream media also extends to a point I’ve repeatedly underlined: fathers. Yes, the divorce rate among parents with autistic children is high (although I have yet to see a number to validate those claims), but as Holly and Rodney prove, stats aren’t necessarily linear with the unpredictability of human emotion and negotiation. Although Rodney battled to ignore RJ’s autism diagnosis, his transformation morphed his battle strategy to advocating autism awareness. Mantegna illustrated his involvement with his emotional reaction when he found a teacher who would get her class to help and support his autistic daughter, and Smith had nothing but respect for single mothers raising autistic children as his single status created an empathy bond.

Returning to the point of Holly putting RJ on a diet, the New York Times Magazine article I discussed covered the newest craze among autism parents, who claim removing wheat and dairy help alleviate autism symptoms despite no scientific research to support those claims. Her internal strategy influenced the actions she pursued to help RJ, as supportive mothers are more likely to follow instinct no matter how much or little scientific backing there is for a treatment. By no means are they fools, they are simply less apt to strictly follow logic when facing a disability boggling the minds of non-autistic people.

Screen grab of Holly expressing appreciation for audience support of the autistic teens who appeared on The Talk

Holly doesn’t ignore logic though, as she chose to highlight strong minds in the final two weeks of her autism awareness coverage. There will never be a shortage of role models for anyone in anything, but only recently has mainstream coverage on autism followed suit. While McElwain was a big get whose appearance will refresh memory banks, Holly and The Talk imported other success stories beyond usual idols. In that respect, finding new sources to speak on autism may reflect on the work she invests in the HollyRod Foundation. Whether this inspires fellow stations to find new success stories is uncertain, but interviews with Fleischmann and Cooper stress the point a psychologist made in my first documentary on autism that reporters can absorb: anyone afflicted with any disability always has a potential to improve their condition and offer a productive role in societal communication.

Assessing long-term impact from The Talk‘s journey through autism will require time to procure. There’s no telling if we’ll see this feature return next April as that will first depend on CBS’ stance on continuing the show to the 2011-12 season and Holly’s interest in holding her co-host role. What can be said is her contributions for the autism community may benefit reporters assigned to future autism stories, as her segments will either lead reporters to borrow the sources she used or inspire them to reach untouched depths. Either way, Holly could not only champion more knowledge of autism, but fresh ideas for newsrooms.

Numbers don’t add up in autism/epilepsy study

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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.

Autism “thunderstruck” by new controversy

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Think the vaccine debate is the only hot topic brewing in autism’s domain? If vaccinations were, they’re not alone anymore. Another lightning rod has surfaced in the form of 22-year-old Ari Ne’eman, who was nominated to the National Council on Disability by President Obama. Ne’eman’s nomination is currently on hold. If confirmed by the Senate, Ne’eman would be the first autistic person to serve on the council.

Sounds like a benchmark, right? Why Ne’eman was placed on hold may not be determined since holds can be issued anonymously (Obama’s seven other nominees to the council were confirmed earlier this month). What isn’t helping his situation is criticism he’s received by some autism advocates for his belief that autistic people should be accepted as a form of neurodiversity instead of being cured.

If you’re new to autism, it’s often referred to as a spectrum disorder because symptoms and severity can range. The common thread is impaired social interaction, but they could have anything from no verbal language to savant skills in communication. Ne’eman himself has Asperger’s, considered a high-functioning form but now a candidate for possible removal from the autism spectrum. Ne’eman is the founder of the Autistic Self-Advocacy Network and his belief mirrors a  growing movement that autism should be accommodated and not eradicated, citing the steps taken for people with physical disabilities, including ramps and bathroom stalls.

Ne’eman has spoken with the New York Times before, suggesting that pursuit of a cure, instead of improving quality of life, will provide few benefits to severely afflicted autistic people. Critics argue his philosophy only represents people who can communicate and take care of themselves. Autism Speaks, whose mission is to finance research for a cure, says Ne’eman fails to understand or sympathize those affected more severely than he is.

Autism Speaks’ rebuttal is hardly a surprise since Ne’eman himself criticized Autism Speaks over a fund-raising video last year. While Autism Speaks is the largest advocacy group in the country, their views are rarely met without criticism that began with the release of the Autism Every Day documentary 4 years ago. Critics accused the film of depicting autism as a disease that doomed the inflicted and anyone surrounding him or her. It’s worth noting that Autism Speaks doesn’t have anyone on their board with autism spectrum disorder.

I mentioned in my post about Wakefield’s ruling from the General Medical Council that the story crossed one controversy off a very long list, and the biggest squashing of the vaccine-autism link would open the door for another hot topic to swoop in. The vaccine debate still lingers, but a cure/no cure rivalry could be a candidate to take over the hot seat. The size of Autism Speaks allowed them to take the first swing at addressing the topic to a national audience when mainstream reports finally made the airwaves and newspapers about 5 years ago. After reading this article, I’m almost certain that journalists have gone away from the overview and moved to the more complex controversies surrounding it. I produced a documentary series on autism a few years ago as I was unsatisfied with the lack of digging from mainstream media, and it appears I won’t be digging alone anymore.

Regarding the story itself, Obama may have nominated him as a reflection of his attitude toward the treatment of different communities. Instead of a hard-line strategy that many consider a benchmark of the Bush years, Ne’eman’s beliefs and accomplishments in his own right could have persuaded the president to recruit someone who could speak for a group that rarely gets a chance to do so. Although a stretch, Ne’eman may mirror Obama himself: both have advocated for topics that aren’t necessarily popular or understood because they believe it’s the best way to make progress in the country. Whether they’re right or wrong is not my place to decide, I’m just discussing a theory on why Ne’eman was given the nomination.

The controversy of responding to a growing autistic population carries a few parallels with the hot buttons surrounding the gay/lesbian/bisexual community. In fact, you could replace autistic with gay in articles and chances are the story would still make sense. While I doubt we’ll see autistic marriage bans, the sense of panic over difference definitely carries over.

If Ne’eman is confirmed, and there’s nothing to suggest that won’t happen, pay attention to any statements released by him or his critics (primarily Autism Speaks). If both sides get big enough to dominate air time on cable news or print space on newspapers, the nomination could serve as an origin. Controversies are ugly, but Ne’eman could potentially be the springboard for other high-functioning autistic people to not only advocate their own stories, but perhaps pursue their dreams knowing that it’s truly possible for them to contribute to society in a meaningful way. I’m still waiting and attempting to create my chance 😛