Autism as an identity, not a disease

Allison Kruske/Daily
Buy this photo

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.

To quote the words of autistic author Temple Grandin: “Who do you think made the first stone spear? That wasn’t the yakkity yaks sitting around the campfire. It was some Asperger sitting in the back of a cave figuring out how to chip rocks into spearheads. Without some autistic traits you wouldn't even have a recording device to record this conversation on.”

In the beginning

Yergeau, who is originally from New Hampshire, dropped out of high school at the end of her freshman year, overwhelmed by bullying from peers who chased her with lit cigarettes and teachers who told her she was “one sick puppy.” She had been tracked in special education classes for years, stigmatized for the way she acted and spoke.

“I was really depressed,” she said of her experience away from school. “I worked at Dunkin’ Donuts. I don’t recommend working at Dunkin’ Donuts.”

But this period also marked a first for Yergeau: the purchase of a desktop computer. Through the Internet, Yergeau gained consciousness of the online communities dedicated to her disability. She taught herself HTML and started a blog. She read about neurodiversity. For the first time, she had found a place where she could enter into a dialogue with like-minded individuals.

“I think that this is the case for a lot of disability communities — that when you’re growing up, often you’re the only person to have that particular disability,” Yergeau said. “Locally, you don’t have the opportunity to get in touch with other like-minded people. That’s where this precious machine sort of comes into play,” she said, caressing her silver Macintosh laptop.

It took her only a year to get a GED and another two to receive an associate’s degree from a nearby technical college. Her major, originally computer science, swiveled rapidly to English when a professor offhandedly told her she was in the wrong area of concentration. Later on, he told her he was giving her a compliment, not a literal command. But she had made up her mind. She wanted her professor’s job. She wanted to enter academia.

After getting an M.A. at DePaul University in Chicago, Yergeau headed to Ohio State University for a Ph.D. in Rhetoric, Composition & Digital Literacy.

It was at Ohio State where Yergeau really got involved in autistic activism.

The impetus was the annual charity walk held by Autism Speaks, a pro-cure autism organization composed largely of parents of autistic children. Several of her autistic friends attended the walk with their families, but were put off by the organization’s inflammatory rhetoric of autism being a “disease” or all autistic individuals being a “burden on their families.” Yergeau was worried that this perception would leak into academia, that her professors and peers would somehow find her work inferior because of her disability.

“Sometimes, to me, it’s like, ‘Will it become high school all over again?’ ” she wondered in a 2009 interview in the Digital Archive of Literacy Narratives.

She and two other autistic individuals, Meg Evans and Andrew De Carlo, got in contact with the national branch of ASAN and formed a local chapter in Ohio.

Slowly, Yergeau gained more activist traction.

She designed a letter writing campaign. She staged walks and protests. She posted on forums. She met with state Rep. Ted Celeste (D-24) and was featured in a mailer he sent out to his district.

After leaving Ohio State, Yergeau accepted a tenure-track position at the University as a digital media studies professor. Though her involvement at Ohio State has fallen away, she remains fully committed to autistic self-activism. Currently, she’s gathering supporters to form a chapter of ASAN in Ann Arbor.

“It’s really starting to come together, which is really nice,” Yergeau said. So far, she’s had some interest from students at Michigan State University and the neurodiversity club at Washtenaw Community College.

Seeds of discord

Yergeau’s brand of thinking is not without opponents.

I asked Public Policy junior Lauren Kobrick, who is a vice president for the Autism Speaks chapter at the University, about her opinion on ASAN’s mission. If certain autistic individuals considered autism to be an integral part of their personalities, should the search for a cure be put on hold?

Kobrick said she thought that while high-functioning autistic people — those with “special math skills or scientific skills,” as she put it — didn’t necessarily need to have a cure if they didn’t want it, the remainder of the autistic population ought to have one.

“You really have to look at the kinds of people who are not as high-functioning. There are some people who cannot do math problems,” Kobrick said. “At (one) school, they teach them how to fold their socks and put the laundry away. Things like that. They need a cure.”

John Best, author of the Hating Autism blog, put it in more succinct terms: “It’s time to put an end to celebrating having brain damage,” he said in a New York Magazine article on the autistic self-advocacy movement.

In Ohio, an ASAN protest against an Autism Speaks walk quickly devolved. Passersby flung insults at the young protesters, calling them retarded or threatening physical harm. One person had to be physically restrained from lunging at them by a walk official.

“I pretty much drowned,” said Corbin Kramer, an artist and autistic rights blogger based in Columbus who calls himself Yergeau’s “wingman.”

“I got sick of it. I got sick of working my ass off and getting yelled at. I got sick of getting very little recognition within ASAN. Advocacy will beat you down if you let it.”

Redefining disability

In the field of academia, Yergeau encountered different challenges: those of incorporation and ethos.

During the job search, she often tried to “pass” for normal, worried that displaying too much of her disability would cause others to find her unable to deal with the stresses of daily life. So she practiced eye contact. She rehearsed questions and answers for small talk, adding in “um”s and “uh”s to make her speech sound more natural. She sat on her hands so that she wouldn’t visibly stim. But, after long days, the system would break down.

Conferences were difficult. Yergeau would get overwhelmed by the masses of people coming out of the ballrooms, the never-ending buzz that emanated from all parts of the building, the orange lizard pattern on the carpet. It was difficult for her to initiate social interactions. At banquets, she would nod, smile and push food around her plate.

Classes were difficult. In graduate school, Yergeau took small seminars composed of fewer than eight or nine people. Participating verbally was a struggle for her. She couldn’t keep track of the group conversations quickly enough, always trying to figure out who was saying what. And because she was unwilling to fully disclose her autism, she had to find alternative ways of contributing.

But what happened if a portion of her grade depended on participation?

“It really sucked,” she said, laughing. “It wasn’t really something I could do. The strange thing is, if the class required a presentation or something that could be memorized, I was absolutely fine. But if it’s actually interacting back and forth, then it just totally broke down.”

Autistic and proud

A few years ago, Yergeau came to a critical decision. She made the choice to disclose her disability in everything she wrote.

“(Before), I only told select people that I was autistic and I’d rather people assume I was really, really weird than assume anything else,” she said. “And now, I’m very, very open about it, and my hope is that other people are open about it.”

Nowadays, she’s grown comfortable with sharing many aspects of her autism — on her blog, aspie rhetor, in op-ed pieces, even in her academic papers. Her voice — urgent, pleading, sometimes angry — has become a staple of her writings, academic or otherwise.

“It’s a really hard-hitting voice, an insightful voice,” said English Prof. Cynthia Selfe, Yergeau’s adviser at Ohio State. “It’s something that makes people pay attention because it’s so honest.”

“I am deathly polite,” Yergeau writes in a webtext published in Computers and Composition Online. “I stare at the bridge of your nose when you speak to me, and I nod, even if I haven’t the slightest idea as to what you’re saying, because I know that nodding is appropriate, as is the illusion that I’m sharing an eye-gaze with you rather than counting the pores on your cheekbones. I empathize with your ear lobe.”

Disclosure in academic writing has been a form of activism for Yergeau.

“As a disabled person and an academic, when I read people who have that sort of authorial presence, it is so meaningful to see people putting themselves out there,” she said. “I think the primary reason why I disclose is because there needs to be some kind of visibility to (autism).”

Yergeau is embarking on a new chapter of her life as she starts the seven-year climb to obtaining tenure. Whether she will remain permanently employed at the University will depend on what she publishes and presents in the next few years.

In many ways, academia has been the right path for her. Like many autistic individuals, she has hyperfocus. It shows in the prolificacy of her work: Yergeau has amassed an enormous number of published papers, proposals, abstracts and video texts during her short time in the field, all of them meticulously composed.

Yet Yergeau still considers herself to be disabled. She continues to seek out disability accommodations as a faculty member, teaching all her classes in computer labs so as to fake eye contact better. Surrounded by a sea of computer screens, she can create the illusion of looking at the students without actually looking at the students.

And she’s worried that her disability might hold her back from obtaining the position and status she wants.

“When we’re talking about disability, including anything that can be considered mental disability, there’s so much stigma,” she said. “Speaking on a wider scale, faculty with disabilities are often invisible and they often aren’t tenure-track. And there are just a lot of issues regarding the whole process and how disability enters into that.”

The perils of disclosure

But how much disclosure is too much? There are things she won’t talk about. In her second week at the University, Yergeau was involuntarily committed to the psychiatric ward at the University hospital. She wrote an impassioned blog post about it after the fact, full of bile and anguish. But in the shadow life of her office, she stays taciturn. She regrets that she shared too much, she tells me.

Is it ever a worry that you’re revealing too much of yourself on the Internet? I ask her. Do you ever have regrets over the content you choose to disclose?

“It’s very much a worry,” Yergeau said. “It’s always been a worry. The longer you do this, the more people you begin to know and meet and the more public it feels.”

I know a lot of things about Yergeau. Before meeting her, I knew that she doesn’t like the texture of fruit. I knew about her obsession with Electric Light Orchestra. It’s both uncomfortable and familiar knowing such intimate details about a person you’ve never met before.

She is married, but I don’t ask questions about her husband. She is a first-generation college student. Her family, from what I’ve gathered, is Pentecostal.

“There are certain things that I won’t disclose,” Yergeau said, tentatively. There are details she still wants to have control over. She considers herself to be a private person. “But it’s hard.”

But how much control does Yergeau really have over the things she says? Even if she chooses to move on or research other things, memories of her past self will forever cling to the blogosphere.

To me, there seems to be a marked conflict between her wish to keep her personal life private and her obligation — we could even call it “responsibility” — to disclose.

It is, in a sense, a responsibility. Yergeau brought up the notion of being a disability role model in the academic and activist sphere as motivation for her disclosure. She said she aspired to be someone who could pave the way for a younger generation to explore and question notions of mental disability.

So far, she’s already impacted a number of people — friends, peers, strangers, superiors.

“I don’t feel like I can bring some of my ideas to some of my professors, but with (Yergeau), I feel very comfortable doing that,” said LSA senior Emily Brehob, whose honors thesis Yergeau advises.

“She’s taught me a lot of things,” Selfe said. “She’s taught me how to be braver in my own writing. Her writing reminds me of how important that kind of personal honesty is, and how valuable it can be for everyone.”

I’m reminded of a YouTube video of a protest orchestrated by ASAN against an Autism Speaks walk in central Ohio. The protesters, there are maybe eight or nine in total, look sad, but determined. Wobbly choruses of “Autism Speaks needs to listen!” scatter across the Columbus streets. Yergeau, holding a large posterboard stamped with the text “LISTEN TO ME, I HAVE AUTISM,” can be seen among them.

“Wherever she goes, Melanie helps people open their eyes,” Selfe said.