By Michael Novinson

The world of autism often seems like a theater filled with people and deprived of oxygen—nearly any noise is treated like shouts of “fire.”

So the media covered the latest controversy—a video produced for Autism Speaks, the nation’s largest autism advocacy group – like any other episode in the decades-long saga to understand the mysterious disorder. But this debate differs fundamentally from those surrounding the role of vaccines or genetics in contributing to autism—those contest science, while this contests the core identity of what it means to live with autism.

Grammy-nominated songwriter Billy Mann and Academy Award-winning director Alfonso Cuaron—both parents of children with autism—created a video called “I Am Autism.” It offers their perspective on the disorder for the World Focus on Autism event, which coincided with the opening of the U.N. General Assembly in September. Take 224 seconds and watch the video: youtube.com/watch?v=HDdcDlQVYtM

The video certainly had a powerful impact on me. I went from wanting to shatter my computer screen with my fist about 100 seconds in to being genuinely choked up by the end of the film. But even then, there was something deeply unsettling that I couldn’t figure out how to express.

For those who haven’t yet watched the video, it claims that “autism”—a third-party voiceover—will “make sure your marriage fails” and “plot to rob you of your children and your dreams,” until “family”—concerned relatives speaking in first-person—say they “can be much stronger than autism ever anticipated” and that “our capacity to love is greater than your capacity to overwhelm.” Time Magazine’s most-read article on November 6 addressed the ensuing controversy.

Yes, the video is overly dramatic and misleading. It presents the disorder as a monolith, ignoring completely the existence of high-functioning autism or Asperger’s Syndrome. It attempts to conjure fear and pity in the audience in order to move them to action. But all advocacy groups exaggerate or tug on emotional heartstrings for fund-raising purposes. That’s not the problem here.

The problem lies in how the film’s creators understand what it means to “be” autism. Replace autism with cancer, AIDS or swine flu, and the ad would still be dramatic, but not disturbing. The problem is that autism is not an illness like cancer or AIDS.

Illnesses are unhealthy conditions that emerge in previously well people. Many can be cured, and those that cannot can enter into remission, sometimes permanently. Illnesses are distinct from the person—the person existed before the illness and hopes to exist after it. People “have” cancer or AIDS, but “are” autistic. The difference is not just one of semantics; it has important implications. Autism is not an illness.

Autism is a neurological disorder that exists from early childhood until death. It impacts brain function and social understanding and manifests itself through limited communication and repetitive behavior. Autism can be managed, its impact can be minimized, but a cure is non-existent and recovery is impossible. The brain is still wired differently.

People can be victims of heart attacks or kidney stones—autism has no victims, only subjects. Autism is part and parcel of its subjects, a core element of their identities like race, religion or ethnicity.

Mann and Cuaron perceive of autism as distinct, as entirely other from those it impacts. They portray autism as a demon that enters, intrudes and acts upon children. Their encounters with autism are authentic and their perspective is valid. But it isn’t representative of many of those who experience autism directly.

Most people with autism have some degree of independence or autonomy—they shape their experience with the disorder as much as the disorder shapes them. Autism is an important part of their identity, but it is not the totality of it. It’s hard to determine where the autism ends and other aspects of their character or personality begin. The experience of living with autism accompanies the dominant neurological component in shaping their worldview.

Being autistic in a neurotypical world is similar to being an immigrant in a new nation, a stranger in a strange land. This analogy is of course imperfect, but it offers some insight. Different nations generally have different languages, values and norms, and immigrants have to learn and adopt them in order to function without assistance and support themselves. Of course, many immigrants will still stand out due to an accent or different skin tone years and even decades after their move. Like immigrants, autistic people do not shed their DNA or ways of understanding as they attempt to get ahead in the neurotypical world.

For those with the the most mild cases of autism, functioning in the neurotypical world would be like moving from rural Wales to Chicago as a young child: the immigrant must adopt a new accent and adapt to a faster-paced life, but they can blend in with little trouble. For people with the most severe cases, it would be like an elderly Martian trying to make do in Manhattan. Temple Grandin, perhaps the most well-known autistic person in academia, said she often feels like an “anthropologist on Mars” during social interactions.

To Autism Speaks, autism speaks through ominous, invisible monsters with husky voices. But many people with autism speak, too, and nearly all are able to communicate in some form. Autism Speaks hasn’t actively sought these people out, though. Not a single person on their 29-member board actually has an autism spectrum disorder.

Giving autistic people a more prominent platform in their own movement may not result in medical breakthroughs, but it should help bridge cultural divides. At the very least, they can caution well-intentioned yet naïve filmmakers against portraying autism subjects as lifeless zombies powerless in their own struggle.

Novinson, a senior political science major, can be reached at mnovinso@haverford.edu.

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