The Dawn of Autistic Space – Excerpt from NeuroTribes

This is an excerpt of Steve Silberman’s award-winning book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, which was recently published in paperback. This section of a chapter called “In Autistic Space” describes how adults on the spectrum became early adopters of the Internet, using it to share stories of their lives, build community, and create the first autistic-run spaces, both online and offline. We published an interview with Steve when the book first came out.

Jim Sinclair became one of the first openly autistic adults online, joining a digital mailing list run out of St. John’s University in New York frequented primarily by parents and professionals. Its founder, Ray Kopp, was the father of a legally blind girl named Shawna who had sought unsuccessfully for years to get a more specific diagnosis for her than “developmentally delayed.” Kopp launched the list in 1992 with a dyslexia expert at St. John’s named Robert Zenhausern. On the threshold of the addition of Asperger’s syndrome to the DSM, one of the most frequently asked questions on the list was whether Kanner’s syndrome could persist into adulthood.

With Donna Williams and Kathy Lissner, Sinclair also launched the first autistic-run organization in history, calling it Autism Network International. Early on, its founders decided that ANI would stand up for the civil rights and self-determination of people all across the spectrum, not just those considered high-functioning like the members of the MAAP list. All of ANI’s original founders had been branded low-functioning as children and had gone on to earn university degrees. They understood that functioning levels change not only in the course of the life span but also day to day. Even a chatty “more able” adult could temporarily lose speech, and the term low-functioning often obscured talents and skills that could be brought out by providing a more suitable environment or an alternate means of communication.

Like any nascent subculture, this emerging community gave birth to its own in-group slang. The most enduring ANI neologism was the term neurotypical, used as a label for nonautistic people for the first time in the group’s newsletter. With its distinctly clinical air, the term (sometimes shortened to NT) turned the diagnostic gaze back on the psychiatric establishment and registered the fact that people on the spectrum were fully capable of irony and sarcasm at a time when it was widely assumed that they didn’t “get” humor.

Carrying the meme to its logical extreme, an autistic woman named Laura Tisoncik launched an official-looking website in 1998 credited to the Institute for the Study of the Neurologically Typical. “Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity,” the site’s FAQ declared. “There is no known cure.”

Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is some- thing bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “We talk about left-handed people, not ‘people with left-handed- ness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’ . . . It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”

The emergence of e-mail, electronic bulletin boards, Usenet news- groups, Internet Relay Chat, America Online, and ultimately the World Wide Web provided a natural home for the growing community of newly diagnosed teenagers and adults, where they could interact at their own pace in a language that often felt more native to them than the spoken word. Carolyn Baird, a mother of four who took over management of the St. John’s list, spoke for many of her peers when she told a Dutch journalist:

Autistic people seem to have an affinity with computers and many of them were already working in computer-related fields prior to the advent of the Internet. The appeal of a computer is that there is only one right way to tell it to do something—it doesn’t misinterpret what you tell it and do something else as people do.

For many of us, this medium has given us the opportunity to be accepted for the first time in our lives as being just like everyone else, and gives us our first hint at what it feels like to be accepted on the quality of our thoughts rather than the quality of our speech.

The ANI posse began making regular appearances at conferences, where they set up booths and handed out newsletters and buttons emblazoned with slogans like “I’m not just WEIRD, I’m AUTISTIC” and “I survived behavior modification.” Their information tables became little oases of autistic space where people could take a break from the probing stares, the swirl of perfumes, the press of flesh, the unpredictable outbreaks of applause, and the constant reminders that their existence was a tragic puzzle. While the NT attendees lined up for lavish banquets and celebrity-studded comedy showcases, the Autistics would pair off to chat and stim in quiet hallways and coatrooms, camping out on the floors of each other’s hotel rooms at night, or sleeping in their cars like impoverished science fiction fans crashing worldcons in the 1940s.

At a conference in St. Louis, one parent-ally of the group managed to get access to the whole vacant upper floor of an office building under renovation near the convention center. Amid dusty heaps of plaster and drywall, the Autistics unfurled their mats and sleeping bags, brought in a couple of floor lamps, and set up empty refrigerator cartons for anyone who needed to retreat to an enclosed space for a while. After fielding questions from parents and psychologists all day, it was a relief to return to a place with the fellow members of their tribe that felt like an enchanted cave after dark. When someone pointed out the window at an old radio tower and said that it was for sale, Sinclair replied that, since the aliens were all gathered in one place now, they could transmit the request to the mothership to come take them home at last.

Reprinted from NeuroTribes by financial arrangement with Avery Books, a member of Penguin Group (USA) LLC, A Penguin Random House Company. Copyright © 2015, Steve Silberman