Autism Is an Identity, Not a Disease: Inside the Neurodiversity Movement | #schoolshooting

In spring 2015, I drove to Williamsburg, Virginia to speak with John Elder Robison, neurodiversity scholar-in-residence at the College of William & Mary. An engineer, entrepreneur, and author of Look Me in the Eye, a memoir of growing up with undiagnosed autism, Robison is a tall, white man with glasses and a fondness for check-patterned dress shirts. As we ate lunch under the hand-stamped tin ceiling of the Blue Talon Inn, we discussed the underdiagnosis of autistic girls and the relative lack of stigma around ADHD when his cell phone rang.

“Hello,” he said, bending his graying head toward his shoulder to hear better over the restaurant chatter. “Yep. What’s up?”

In his memoir, Robison writes that he repeatedly found himself in trouble at school. Eventually, he dropped out to teach himself electrical engineering, going on to design guitars for the rock band KISS and electronic games for Milton Bradley. Finally, at 40, a therapist suggested he might be autistic, a discovery that catapulted him into autism advocacy and advising on research and policy.

After a lengthy silence, Robison responded to the person on the other end of the phone. “Tell them I’ll come meet them…. I’ll head for Blow Hall right now. Yup. Bye bye.”

“Autism emergency?” I asked, as he put down the phone.

“I guess so,” he replied.

We paid the bill quickly and set off on a speed walk across the brick-and-grass quads that make up William & Mary’s campus. At Blow Memorial Hall, Robison found a couple whose 23-year old autistic son was living at home and attending Christopher Newport University, but might benefit from the neurodiversity community at William & Mary. Over the course of the next 35 minutes, Robison explained how William & Mary was leading the way in neurodiversity and community building. He encouraged the family to consider a transfer or graduate program so their son could connect with the student group. “He would see that there was a community that was his own kind, that was welcoming,” Robison said. “That’s very different and it’s a much stronger proposition than having someone to talk to at the counseling center.”

The previous day, I’d accompanied him as he’d worked tirelessly, hand-carrying the gospel of neurodiversity through the campus and community, converting people in one’s and two’s at a time. First, we attended a meeting of the neurodiversity working group, a combination of administrators and faculty, with one student representative, the aptly named Haley Outlaw, a sophomore with shoulder-length brown hair and librarian glasses. Robison spoke at two different classes and presented over lunch with the counseling office, to raise awareness of neurodivergent students’ needs.

Robison also brought me to the neurodiversity student group, where I met Outlaw’s co-leader, Joel Carver, also a sophomore. The student conversation sounded like a typical college discussion: grousing about early-morning classes, gently teasing each other about personal foibles, brainstorming upcoming events. The group thought it would be fun to have an ice cream anti-social, where people could attend, eat ice cream ,and be awkward, maybe even have a bouncy castle. Free pizza at every class where Robison presents, to draw a crowd. They explained to me that they’ve adopted War Pug as their symbol.

On the topic of neurodiversity, their passion rose. “Worth shouldn’t be determined by conformity,” Carver said. They shuddered over the story of an autistic child killed by a parent. “Nobody cares about the dead kid,” one student said. “It’s all about the put-upon parents.” They grew particularly heated talking about advocacy groups espousing a cure approach. “They’re like racist grandparents on the porch,” Carver said. “They believe autism should be cured, [that] we should be removed from the gene pool.”

The conversations and activism happening in this college common room are being mirrored around the country and world, as the first generation of self-identified neurodivergent college students come of age. Unlike Robison, who received his autism diagnosis as an adult, these young people learn about their neurodivergence in their late teens, early 20s, or even earlier, when their identity is still forming. As a result, they’re pushing the boundaries of what defines a student or a scholar, and expanding the picture of who deserves to be at college.

Take DJ Savarese, a nonspeaking autistic man who communicates through a tablet or computer. His parents initially taught him to communicate with a speaking partner holding the tablet and stabilizing his arm, then helped him communicate more independently over time, as depicted in Deej, a documentary about his transition to Oberlin College, where he graduated Phi Beta Kappa in 2017.

And in the years since I first met Outlaw at the beginning of her advocacy work, she graduated from William & Mary in 2017. Now, she works for the Autistic Self Advocacy Network, training neurodivergent college students from across the continent in a one-week summer session, and supporting them from afar as they return to their campuses. She herself attended the training in 2015, “one of the best weeks of my life,” she said, when I caught up with her on a recent afternoon. She described the groundbreaking feeling of creating new programs, resources, or events to support disabled people, that didn’t exist before.

“People in my generation grew up with rights that previous generations of disabled people didn’t have. It’s because of the work of previous generations of disabled people that I grew up with those rights,” she said. “I want to work hard to make things better for the next generations, the ones after me. So that every generation grows up with more rights and less barriers.”

There’s certainly been progress, Outlaw said, but she regularly hears about professors refusing accommodations to disabled students and about systemic ableism and oppression on college campuses. So she wants to arm neurodivergent students with knowledge of their rights and tools to fight to claim them. She’d like colleges and universities to abolish attendance policies, which she considers ableist, and stop requiring documentation of a diagnosis for accommodations, since a diagnosis is more available to wealthy, white students with educated parents.

“It really means recognizing that discrimination is systemic. It’s not one student who is not getting an accommodation because her professor doesn’t respect accommodations. It’s not one student who leaves because the school forces them out because of mental illness,” she said. “Hundreds if not thousands of students are all experiencing that.”

*Editor’s note: Most people interviewed for this story prefer identity-first language. We are honoring their preferences here.

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