The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.

Autism Is a Valuable Part of Humanity’s Genetic Legacy

Autism Is a Valuable Part of Humanity’s Genetic Legacy

The state of the universe.
Sept. 23 2015 7:28 AM

Our Neurodiverse World

Autism is a valuable part of humanity’s genetic legacy.

autism retreat.
Autistic people have always been part of the human community, though they have often been relegated to the margins of society.

Photo illustration by Juliana Jiménez. Photo by Julia Vetrova/Thinkstock.

Excerpted from NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman. Out now from Avery Books.

The first “Autreat” was held at Camp Bristol Hills in Canandaigua, New York, in late July 1996. Quiet and remote, the camp offered community members of Autism Network International, an advocacy group organized for and by autistics, an opportunity to create an environment that was relatively free of the sensory assaults that were unavoidable in most urban conference centers.

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The theme of the conference was “Celebrating Autistic Culture,” and nearly 60 people came. The group was as diverse as the autism spectrum itself, including nonspeaking adults who used letter boards to communicate, an urban planner who worked at the Los Angeles International Airport, and the late photographer Dan Asher, who chronicled the early days of punk and reggae in New York City while hanging out with novelist William Burroughs in his bunker on the Lower East Side. The program included presentations on “self-advocacy” (a term borrowed from the disability rights movement), educating law-enforcement personnel, and the history of deaf culture, which offered instructive parallels for the culture being born at Autreat.

The conference began with an orientation session in the main lodge led by ANI founder Jim Sinclair, who explained the guidelines that had been established to maintain and preserve the environment as autistic space. Photographs and videos could only be taken after asking for permission, and only outdoors, so that the f lash didn’t trigger seizures. Cigarette smoking and perfumes were banned. Respect for each person’s solitude and personal space was essential, and “interaction badges” allowed everyone to know at a glance who was open to talking. All of the conference events were optional, including the orientation itself; the overriding principle was “opportunity but not pressure.”

People who came to Autreat had their own unique set of abilities and intense interests, which they had been pursuing for years in solitude with monastic devotion. Autreat became an annual event and provided a template for similar conferences in other countries, including Autscape in England and Projekt Empowerment in Sweden. The most commonly reported experience at these gatherings was that the participants didn’t feel disabled, though their neurology had not changed.

ANI launched its online list, ANI-L, in 1994. Like a specialized ecological niche, ANI-L had acted as an incubator for Autistic culture, accelerating its evolution. In 1996, a computer programmer in the Netherlands named Martijn Dekker set up a list called Independent Living on the Autism Spectrum, or InLv. People with dyslexia, ADHD, dyscalculia, and a myriad of other conditions (christened “cousins” in the early days of ANI) were also welcome to join the list. InLv was another nutrient-rich tide pool that accelerated the evolution of autistic culture. The collective ethos of InLv, said writer and list member Harvey Blume in the New York Times in 1997, was “neurological pluralism.” He was the first mainstream journalist to pick up on the significance of online communities for people with neurological differences. “The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”

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A new idea was brewing at events like Autreat and in the myriad of autistic spaces taking root online. It turned out to be an idea as old as Hans Asperger’s notion that people with the traits of his syndrome have always been part of the human community, standing apart, quietly making the world that mocks and shuns them a better place.

What is autism?

Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behavior and needs that manifests in different ways at various stages of an individual’s development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938. He was equally prescient in insisting that the traits of autism are “not at all rare.” In fact, given current estimates of prevalence, autistic people constitute one of the largest minorities in the world. There are roughly as many people on the spectrum in America as there are Jews.

Autistic people have always been part of the human community, though they have often been relegated to the margins of society. For most of the 20th century, they were hidden behind a welter of competing labels— “schizoid personality disorder,” “childhood schizophrenia,” “children with circumscribed interests,” the initial diagnosis of “minimal brain damage,” and many other labels, such as “multiplex personality disorder,” which have fallen out of use. But society continues to insist on framing autism as a contemporary aberration—the unique disorder of our uniquely disordered times—caused by some tragic convergence of genetic predisposition and risk factors hidden somewhere in the toxic modern world, such as air pollution, an overdose of video games, and highly processed foods.

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Our DNA tells a different story. In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others. Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution.

“Neurodiversity” advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. They suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.

This process has barely begun. Imagine if society had put off the issue of civil rights until the genetics of race were sorted out, or denied wheelchair users access to public buildings while insisting that someday, with the help of science, everyone will be able to walk. Viewed as a form of disability that is relatively common rather than as a baffling enigma, autism is not so baffling after all. Designing appropriate forms of support and accommodation is not beyond our capabilities as a society, as the history of the disability rights movement proves. But first we have to learn to think more intelligently about people who think differently.

One way to understand neurodiversity is to think in terms of human operating systems instead of diagnostic labels like dyslexia and ADHD. The brain is, above all, a marvelously adaptive organism, adept at maximizing its chances of success even in the face of daunting limitations.

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Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs. By autistic standards, the “normal” brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud and full of people who have little respect for personal space.

The main reason why the Internet was able to transform the world in a single generation is that it was specifically built to be “platform agnostic.” The Internet doesn’t care if your home computer or mobile device is running Windows, Linux, or the latest version of Apple’s iOS. Its protocols and standards were designed to work with them all to maximize the potential for innovation at the edges.

In recent years, a growing alliance of autistic self-advocates, parents, and educators who have embraced the concept of neurodiversity have suggested a number of innovations that  could provide the foundation  for an open world designed to work with a broad range of human operating systems.

The physical layout of such a world would offer a variety of sensory- friendly environments based on principles developed in autistic spaces like Autreat. An inclusive school, for example, would feature designated quiet areas where a student who felt temporarily overwhelmed could avoid a meltdown. In classrooms, distracting sensory input—such as the buzzing of fluorescent lights—would be kept to a minimum. Students would also be allowed to customize their personal sensory space by wearing noise- reducing headphones, sunglasses to avoid glare, and other easily affordable and minimally disruptive accommodations.

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In 2011, a nonprofit corporation called the Theatre Development Fund in New York City launched an initiative to encourage Broadway producers to offer “autism-friendly” performances of hit shows like Mary Poppins and The Lion King. At these events, the use of strobe lights and pyrotechnics onstage was limited, quiet areas were set aside in the theater lobby, and social stories were made available to parents beforehand so that their children could know what to expect. These events were so successful that major cinema chains like AMC have begun offering sensory-friendly showings of movies like Disney’s Frozen in theaters all over the country. This is not only a humane idea, it’s smart marketing too, because the families of autistic children are often hesitant to bring them to movies and restaurants for fear of disrupting the experience of the other patrons. These special showings are invariably in high demand.

Educators like Thomas Armstrong, author of Neurodiversity in the Classroom, suggest that more emphasis should be placed on early childhood education, when a child’s  individual learning style first comes to light, because a child’s experiences in school can set him or her up for success or failure in later life. Armstrong points out that, too often, the process of negotiating an Individualized Education Program focuses exclusively on addressing a child’s deficits at the expense of focusing on strengths that teachers could employ to engage the child’s interests and help build confidence.

Many autistic people benefit from hands-on learning. The rise of the maker movement—which hosts events called Maker Faires, where garage inventors of all ages are encouraged to show off their latest projects—has been a boon to young people on the spectrum. At the White House Science Fair in 2012, President Obama was featured shooting off an “extreme marshmallow cannon,” which a 14-year-old autistic boy named Joey Hudy had designed and built himself.

Neurodiversity is also being embraced in the workplace by companies like Specialisterne, founded in Denmark, which employs people on the spectrum to put their autistic intelligence to work in the technology industry. Specialisterne has been so successful that it has opened satellite offices in the United Kingdom and the United States, and recently forged a strategic alliance with the German software company SAP to serve the needs of the rapidly growing technology industry in India. Instead of putting potential candidates through grueling face-to-face interviews, Specialisterne lets them cut loose with a table full of Lego Mindstorm robots, little machines that can be programmed to perform simple tasks. Thus, candidates can just show off their skills rather than have to explain them.

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Neurodiversity activists have also pushed for more autistic representation in policymaking, using the slogan, “Nothing about us, without us.” Fundraising organizations like Autism Speaks have been resistant to the input of autistic adults, who are arguably in the best position to decide what kinds of research would benefit autistic people and their families most.

“Nothing about us, without us” also extends to the process of doing science itself. In recent years, a psychiatrist at the University of Montréal, Laurent Mottron, has produced a series of groundbreaking studies on autism with the help of his principal collaborator, an autistic researcher named Michelle Dawson. She fulfills a number of essential functions in the lab, including keeping Mottron up to date with the state of the research in the field (“She reads everything and forgets nothing,” he says), vetting experimental designs for errors and subtle forms of bias, and advocating for higher scientific standards in the field overall. “Many autistics, I believe, are suited for academic science,” Mottron wrote in Nature in 2011. “I believe that they contribute to science because of their autism, not in spite of it.”

The process of building a world suited to the needs and special abilities of all kinds of minds is just starting, but unlike long-range projects like teasing out the genetics and environmental factors that contribute to complex conditions like autism, the returns for autistic people and their families are practical and immediate. These innovations are also often much less expensive than projects requiring millions of dollars in federal funding.

With the generation of autistic people diagnosed in the 1990s now coming of age, society can no longer afford to pretend that autism suddenly loomed up out of nowhere, like the black monolith in 2001: A Space Odyssey. There is much work to be done.

Reprinted from NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by arrangement with Avery Books, a member of Penguin Group (USA) LLC, A Penguin Random House Company. Copyright © 2015, Steve Silberman.