My little brother, Alex (16), is the sweetest, most charming person I know. It’s a privilege being his sister and, while I could talk about our close relationship for hours, I’d probably try to get through that conversation without bringing up the fact he has autism.
My main reason for avoidance is the mandatory explanation. According to the “What is Autism?” page on the Autism Speaks website, “… statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 68 American children as on the autism spectrum …” with, “An estimated 1 out of 42 boys and 1 in 189 girls … diagnosed with autism in the United States.” In my experience, though, a majority of people still don’t know what autism is.
I admit I haven’t helped much towards expanding that knowledge. Trouble is, once you drop the word “autism,” the conversation is usually commandeered. It’s not about my brother being my best friend anymore, and if I have 10 minutes in which to capture his awesomeness (because let’s face it — “hours” isn’t realistic) they’re going to be spent on a funny anecdote instead.
Problems with public perception
However, these quizzical responses I’ve received are proof that public perception of autism needs to be expanded. Currently general understanding is limited to what media coverage has been spent on the subject, and the media consistently present autism in very specific ways:
social awkwardness, or trouble communicating with others
debates over vaccine culpability or gluten-free diets
savants who are remarkably gifted at certain tasks — like counting cards or toothpicks in one of the most well-known pop culture references to the disorder from the movie, Rain Man
As history of psychology professor, Douwe Draaisma, states in “Stereotypes of Autism,” in Philosophical Transactions of the Royal Society B: “Even if savantism mostly comes with autism, the majority of cases of autism do not have savantism. In movies, however, there are hardly any autistic characters not having savant skills.”
Another popular depiction Draaisma examines is where “… autistic persons are presented as being not so different from us, after all, or, to say the same that we are all in a sense autistic.” Such representations are not necessarily wrong, but they relate a narrow range of the disorder as a whole. Yet since they are commonly propagated, “… the characteristics of autism blur into normal behaviours, contributing to the ‘fuzziness’ of the concept of autism.”
Autism runs on a spectrum that covers cases from mild or high-functioning to severe or low-functioning. Separate diagnoses used to reflect these distinctions more, but the May 2013 release of the current edition of the Diagnostic and Statistical Manual of Mental Disorders changed that. As Amy S. F. Lutz reported for Slate at the time, the DSM-5 combined, “Asperger’s syndrome … pervasive developmental disorder … and childhood disintegrative disorder … into the single diagnosis of autism spectrum disorder,” with more severe forms. This was concerning both for parents of children with Asperger’s, “… who suspect[ed] the new criteria were designed to exclude higher-functioning kids from a diagnosis and thereby deny them services,” and for “Parents of lower-functioning kids … concerned about how the influx of high-functioning individuals will affect the public’s perception of autism …”
Children with severe autism, which is my brother’s diagnosis, are not the customary representatives of the disorder on news reports, or in movies and television shows. Asperger’s has become the public face of ASD, and there would be no reason to begrudge that if it weren’t for the problem of it being the only face — a synonym for “autism” rather than a type. Because while autism is being talked about now more than ever before, which is positive, the majority of the stories getting told are on higher-functioning individuals. This promotes a false belief that the two terms — “autism” and “Asperger’s” — can be used interchangeably when they are not the same.
Why the distinction matters
I bring this up now because, when a severe case finally did show up in the headlines recently, it was for the worst possible reason. Kelli Stapleton has pleaded guilty to first-degree child abuse after attempting to kill herself and her 15-year-old autistic daughter, Issy, by carbon monoxide poisoning last year. During an appearance on the Dr. Phil show a few weeks ago, she claimed, “The jail of Benzie County has been a much kinder warden than the jail of autism has been.” This story infuriates me.
Stapleton’s flawed attempts to use difficult realities of autism to excuse attempted murder of her child are enraging. What she tried to do has wasn’t a “solution” to her situation, and there can be no excuse. That doesn’t mean the obstacles she brings up in her interview (her daughter’s physical attacks; lack of services available or difficulty getting them) aren’t real. They are, and they need to be discussed. But not in this terrible context.
I understand media can’t always afford to broadcast long, in-depth reports on a single subject, but when coverage is placed on autism, what’s the harm in covering the whole spectrum? Even if in pieces, viewers could start grasping a more comprehensive portrait of the disorder, and in 2014 they need that already.
Rachel Bellwoar is a junior English major attending Arcadia University, where she won the Elaine P. Maimon Award for Excellence in Freshman Writing last spring. She also writes entertainment articles for the student-run publication, Loco Mag.