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Autism as an identity, not a disease

Allison Kruske/Daily
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By Jennifer Xu, Magazine Editor
Published September 27, 2012

English Prof. Melanie Yergeau makes me anxious.

Part of it is because she rarely meets my eye, her birdlike pupils darting from the bridge of my nose to the screen of her MacBook. I learn later on that this is a facet of her autism.

Part of it is because she threads a stiff rubber band between her fingers, snapping it back-and-forth to a drumbeat only she seems to hear. I learn that this is also a facet of her autism, a coping mechanism to self-regulate when the situation gets too overwhelming. “Stimming,” it’s called.

The lights are off in Yergeau’s fourth floor office in Angell Hall, the window shades drawn. A certificate for a completed GED is propped up on the air vent. An Electric Light Orchestra alarm clock ticks from behind the desk.

I start playing with the strands of my hair. I slide my rings off and on my index finger, pointing my gaze fixedly at the edge of her desk chair.

If somebody were to walk in, he would have thought he was witnessing a bizarrely choreographed mating ritual.

Listen to me, I have autism

Every few months, newspaper headlines roar over the latest, greatest cause of the autism “epidemic.”

Autism is “growing,” reporters say. Autism is a disease. The echo chamber swells louder with each click of the mouse. Autism must be stamped out at all costs. It tears families apart, dooms children to social instability.

Not so, says Melanie Yergeau, an English professor specializing in digital media studies at the University. Since she was diagnosed with autism at age 22, Yergeau has been a critical member of the growing autistic self-advocacy movement. To her, autism is not an illness, but rather an alternative way of being. Being autistic is an integral part of her personhood, no different from being female or Caucasian.

“If you were to take away autism, you’re taking away the person you’re talking to,” she said. “It’s how you process information. It’s how you communicate. It’s how you sense the world. It affects your movement. I don’t know who I’d be if I did not have autism. I wouldn’t be me.”

Yergeau serves on the board of directors of the Autistic Self-Advocacy Network, an organization composed of people on the autistic spectrum who seek to give voice to the conversations that concern them. Launched by then-University of Maryland, Baltimore County student Ari Ne’eman in 2006, ASAN’s primary mission is to challenge the prevailing notion that autism needs to be cured. Autistic people don’t consider autism to be a disease. So why should the rest of the world?

In his seminal essay “Don’t Mourn for Us,” autistic rights activist Jim Sinclair wrote, “Autism isn't something a person has, or a ‘shell’ that a person is trapped inside. There’s no normal child hidden behind the autism. Therefore, when parents say, ‘I wish my child did not have autism,’ what they're really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.’ ”

To the members of ASAN, atypical neurological difference ought to be embraced and celebrated. Society needs to change, rather than the individuals, the members say. Having autism is a difference, to be sure, but it’s not inferior to any other notion of mental development, no less valued than the color of one’s skin or one’s sex.

The autistic community even has a special word for it: neurodiversity. Having people of different neurological perspectives enriches our perception of the world, they say.