MEDANSKY: Limited autism discourse

Sidewinder
By Marissa Medansky
Thursday, February 2, 2012

“Touch,” a new television series premiering this week on Fox, centers on the experiences of Jake, an enigmatic 11-year-old boy endowed with dazzling mathematical abilities and a profound sense of isolation. He doesn’t talk, either; Jake’s father must navigate his son’s world in silence. Previous descriptions of the show explicitly described Jake as autistic, but no more: Fox seems to be moving away from an explicit diagnosis. Even so, the implications surrounding Jake and his condition remain clear: Jake is autistic, and his autism has endowed him with an unique understanding of the world around him.

And so “Touch” joins the ranks of what came before it: “Rain Man,” the final episode of “St. Elsewhere” and so on. Writing for Think Progress, Alyssa Rosenberg brilliantly dubbed the genre a “magical alternative to autism” — an alternate fantasy world that recasts autism into, quite literally, a superpower.

This narrative of magical exceptionalism seems to be rooted in a blend of discomfort and optimism. As blogger Shannon Rosa writes, “people can’t handle the fact that some people are just different without having something fabulously acceptable as balance, because otherwise we’d just have to accept autistic people on their own terms.”

Alongside the fantasy world of “Touch” comes the universe of Asperger’s syndrome and high-functioning autism. Despite the daily struggles that many with Asperger’s undergo, the media treats the disorder with a lighter, fluffier touch, casting it as a quirky punch line on “The Big Bang Theory” or feel-good moment on the silver screen. Such treatments displace the actual voices of people with Asperger’s — you can check out the growing neurodiversity blogosphere for some informed commentary — and unfairly universalize necessarily individual experiences.

As the canonized catchphrase goes: If you know one autistic person, you know one person with autism. Each case is unique. But limited representations of autism on the national stage limit our national discourse.

Discussion surrounding autism — and not autism with a side of superpowers — typically centers on high-functioning individuals. Yet like any spectrum disorder, autism affects each individual differently. And in many cases, autism and Asperger’s syndrome aren’t synonyms; think squares and rectangles.

When I tell others my brother has autism, they automatically picture an individual with Asperger’s and associate that image with a predetermined set of symptoms. But how do I respond to “Is your brother proud of you?” when my brother is severely autistic and non-verbal — currently in a high school classroom doing preschool level work? My brother, like many people with profound autism, will require special, intensive care for the rest of his life. I hope he’s proud of me, but I frankly couldn’t care less.

To progress, the dialogue surrounding autism must also include the narratives of people with autism of all stripes, including low-functioning adults. Just Googling “adult autism abuse” provides horrific insight into stories of caregiver abuse, malpractice and bystander apathy, which disproportionately affect the most vulnerable, most severely affected people. Even Kim Peak, the real-life Rain Man, required the constant care of his father until his 2009 death. Though Peak didn’t have autism, but another disability, his story — without that whole mathematical genius subplot, anyway — exemplifies the fate of many autistic adults.

In describing autism, words like “most” and “many” feel necessary but ultimately meaningless. Any so-called autism community derives its sense of unity not from a checklist of identical experiences, but rather from shared understandings, empathies and emotions. Each person defines their own understanding of autism from their own experiences, reflecting their own biases — my own experiences, after all, privilege the narratives of low-functioning individuals.

As the American Psychological Association begins to endure controversy for its efforts to narrow the definition of autism, pundits purport to articulate the interests of this perceived autism community, as though anyone who has ever thought about autism feels exactly the same about every issue. But how each person responds to the potential change in the DSM-V reflects her own experiences. For instance, I hope the change will focus public attention toward cases of severe autism but would stand in opposition to any retroactive denial of social services for the highest-functioning individuals. But even here, I speak only for myself.

Autism has many voices — voices of Rain Man and Kim Peak, of the Jake from “Touch,” of my brother Eli. But these voices do not speak in unison, nor do they form a cohesive narrative. And though Jake from “Touch” does not speak, television viewers should remember that Jake, in a sense, speaks only for himself. After all, it’s no wonder that one of the most popular images associated with autism advocacy is a giant, multicolored puzzle. Sometimes, that’s exactly what it feels like.

Marissa Medansky is a freshman in Morse College. Her column runs on alternate Thursdays. Contact her at marissa.medansky@yale.edu.

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