ASPERGER’S SINCE 2000

The Geek Cruise
In 2000, the first “Geek Cruise” was held on the Holland America liner Volendam. Over 100 computer programmers were on board, hoping to replace technology conferences in lifeless convention centres with oceangoing ships to exotic destinations.

Of the many legendary coders on board, the uncontested geek star was Larry Wall, the creator of Perl, one of the world’s first and most widely used open-source programming languages. Thousands of websites we rely on daily – including Amazon, Craigslist, and the Internet Movie Database – would have never gotten off the ground without Perl, the beloved “Swiss Army chainsaw” of harried systems administrators everywhere. To an unusual and colourful extent, the language is an expression of the mind of its author.
The secret of Perl’s versatility is that it also expresses the minds of Larry’s far-flung network of collaborators: the global community of Perl “hackers.” The code encourages programmers to develop their style; everyone is invited to help improve it. The official motto of this community is “There is more than one way to do it.”

Perl was born as a top-secret project at the National Security Agency. Larry had been asked to design a software tool for remotely configuring two sets of computers, one on the East Coast and one on the West Coast. But Larry was loath to spend a month coding a widget that could only be used for a single task. Instead, he crafted Perl and slipped a tape containing the source code into his pocket before walking out the door.

In this way, Perl’s culture has become a thriving digital meritocracy in which ideas are judged on usefulness and originality rather than personal charisma or clout. These values of flexibility, democracy, and openness have enabled the code to become ubiquitous – the “duct tape that holds the Internet together,” as Perl hackers say.

As the Volendam steered into open water, the passengers pulled Ethernet cables, routers, and other networking paraphernalia out of their bags to upgrade the ship’s communication systems. Instead of dozing in chaise longues by the pool, the nerdy shipmates were eager to figure out how things work and help make them work better.

Belying the stereotype of hard-core coders as dull and awkward conversationalists, Larry and the others displayed a striking gift for puns, wordplay, and teasing banter. One night, the topic of conversation was theoretical physics; the next was Cantonese opera, followed by thoughts on why so many coders and mathematicians are also chess players and musicians. The tireless curiosity of these middle-aged wizards gave them an endearingly youthful quality as if they’d found ways of turning teenage quests for arcane knowledge into rewarding careers. On weekends, they coded recreationally, spinning off side projects that lay the foundations of new technologies and startups.

They were not just a group of IT experts who happened to use the same tools. They were more like a tribe of digital natives with their history, rituals, ethics, forms of play, and oral lore. While the central focus of their lives was their work in solitude, they enjoyed being with others on the same frequency. They were a convivial society of loners.

Their medieval predecessors might have spent their days copying manuscripts, keeping musical instruments in tune, weaving, or trying to transmute base metals into gold. Their equivalents in the mid-twentieth century aimed telescopes at the stars, built radios from do-it-yourself kits, or blew up beakers in the garage. In the past forty years, some members of this tribe have migrated from the margins of society to the mainstream and currently work at companies like Facebook, Apple, and Google. Along the way, they refashioned pop culture in their image; now it’s cool to be obsessed with dinosaurs, periodic tables, and Doctor Who – at any age. The kids formerly ridiculed as nerds and brainiacs have grown up to become the architects of our future.

Larry has an autistic daughter. In 2000, autism was considered rare and exotic, and savants like Raymond Babbitt in Rainman were even rarer than that. At home, he had replaced the chime on the clothes dryer with an unobtrusive light bulb because of the little ding! At the end of each cycle, it disconcerted him. Larry’s keen sensitivity to sound was linked to his daughter’s condition and the tribe of industrious hermits who invented the modern digital world.

Judy Estrin. One of the most highly regarded female technologists in Silicon Valley, as a graduate student at Stanford in the 1970s, helped Vint Cerf develop the TCP/IP protocols that form the backbone of the Internet. Judy went on to a successful career, launching startups in the male-dominated tech industry. Judy’s sister also had an autistic daughter, which seemed like an odd coincidence that two technically accomplished families in the Valley had a rare neurological disorder. Special education teachers believed there was an epidemic of autism in Silicon Valley: “Something terrible is happening to our children.”
The mysterious rise in diagnoses was not restricted to Silicon Valley. The same thing was happening all over the world.

Alex Plank and Dan Grover. In 2004, these two teenagers launched Wrong Planet, one of the first autistic spaces on the web. Plank had already contributed dozens of articles and over 6,000 edits to Wikipedia by the time he was sixteen. He had also suffered the same kinds of bullying, ridicule, and exclusion as many of his atypical peers. He felt confident that his social status as a dork was the inevitable side effect of being highly gifted. He self-diagnosed and felt like a loser, but decided to prove everyone wrong.

Unable to find any online hangouts (Aspergia was one of the few, but he thought they could do better), they built community forums on social skills, bullying, and anxiety, with opportunities for members to contribute by the time they were 15 and 17. They aimed to alleviate those with Asperger’s from this pressure to conform. “It is best to learn how to use your uniqueness to your advantage and find your place in the world.” They were adept at promoting their creation and generating a healthy income stream. When linked to BitTorrent, thousands of new members poured in. Young people on the spectrum flocked to online communities like Wrong Planet to announce their diagnoses as cause for celebration because their lives had, at last, come into focus.

NYU Child Study Center. In December 2007, a series of ominous billboards appeared on street corners in Manhattan that looked like ransom notes: “We Have Your Son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning. Autism.” And “We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It’s up to you now. Asperger’s syndrome.” They were no more histrionic or stigmatizing than the messages that fund-raising organizations like Autism Speaks had been pumping out for years, comparing autism to cancer, cystic fibrosis, and other potentially fatal diseases. The campaign was to alert the public to the “silent public health epidemic” of childhood mental illness – 12 million children in America were being “held hostage by a psychiatric disorder – and these were meant to inform the public.

Outraged parents launched a firestorm of e-mails and blogs in NYU’s direction. The architect of the protest was a policy wonk named Ari Ne’eman, the 19-year-old co-founder of the Autistic Self-Advocacy Network (ASAN). After his Asperger’s diagnosis at age twelve, he had to leave school, which he loved. Many of his difficulties were not symptoms of his autism, but problems built into the ways that society treats people who don’t meet the standard expectations of “normal.” He felt a strange disconnect between the autistic community and the broader disability rights movement.

Autism was still discussed almost exclusively in medical rather than social terms, especially at the height of the Vaccine Wars, when virtually all the media coverage revolved around the vaccine controversy. He rejected the approach of “high-functioning” autistics distancing themselves from “low-functioning” autistics, and didn’t want anything to do with the word disability. All autistic people would benefit from destigmatizing the condition and improving access to services and education.

He signed up for anything related to policy and politics, attended autism conferences, and founded ASAN. The Child Study Center finally decided to pull the ads. ASAN also persuaded President Obama to include disabled workers in the executive order raising the minimum wage for federal contractors. It also worked with the APA in drafting the DSM-5 to ensure that the coping skills employed by autistic teenagers, adults, women, and people of colour to fit in would not be used to exclude them from a diagnosis – its full breadth was finally reflected in the APA’s criteria.

As the concept of neurodiversity took root, ASAN developed into an incubator for the next generation of disability rights activists, many of whom were women. ASAN’s Julia Bascom published a groundbreaking anthology of essays by people on the spectrum called Loud Hands, which offered a broad range of autistic perspectives on such issues as being labelled “low-functioning” and the harm inflicted by organizations like Autism Speaks that frame autistic people as a tragedy and a burden to society. “One of the cruellest tricks our culture plays on autistic people is that it makes us strangers to ourselves. Autistics are no longer willing to be spectators in our own stories.”

The movement offered ways of fighting for a better future for their children that didn’t depend on hopes for recovery. It enabled young people to have role models of happy, creative, and socially engaged autistic lives.

A website called Thinking Person’s Guide to Autism covered a broad range of subjects with no whitewashing or promotion of dubious treatments. Just the facts, from people a little further down the road. They are not broken, just neurologically outnumbered.

Star Trek served as a metaphor for an inclusive society of a multiracial, multispecies crew of the Enterprise. No one was left out in the Star Trek universe, no one was ostracized, and no one was too weird. The stranger you were, the cooler you were, because you had more to bring. That was a lifesaving message for a kid bullied for being different. They wanted to live on the Enterprise. They often related best to Spock, who seemed much cooler than the conniving and chronically intemperate humans around him.

The notion that high-tech hotspots like Silicon Valley and Route 128 outside of Boston were havens for brilliant, socially awkward programmers and engineers was becoming a cliche in popular culture. Asperger’s was called the “engineer’s disorder”. All tech people were thought to be slightly autistic.

One explanation for the surge of autism in tech-centric communities was that the culture of these places had opened up social possibilities for men and women on the spectrum that had never before existed in history. Many parents become aware of their autistic traits only in the wake of their child’s diagnosis. Marriages work out best when two people with autism marry, as they are often attracted to each other because their intellects work on a similar wavelength. The attraction between people with similar genetic traits is called assortive mating. Fathers and grandfathers of children with autism were more likely to be engineers. Could assortive mating between men and women carrying genes for autism be responsible for the rising number of diagnoses in the Valley?

People who have struggled in social situations for most of their lives didn’t know why. Having only a small group of close friends was thought odd, but they never learned how to correct it. They find most people annoying and illogical. The general public and hiring companies must understand this group of people. Many fall through the cracks due to their “odd” behaviours, despite having so much to contribute if given the chance.

Microsoft supervisors found that all their top debuggers had Asperger’s syndrome. These people can hold hundreds of lines of code in their heads as a visual image. They look for flaws in the pattern and where the bugs are.

The ultimate hack for a team of Silicon Valley programmers may be cracking the genetic code that makes them so skilled at their craft.

Every public discussion of autism was dominated by an angry debate about vaccines, based on the controversial findings of a gastroenterologist in England named Andrew Wakefield who claimed to have uncovered a potential link between the measles, mumps, and rubella vaccine (MMR) and a form of regression that he dubbed “autistic enterocolitis.”

Parents waded through a minefield of conflicting information about the safety of routine childhood inoculations and the potential role of heavy metals like mercury (contained in trace amounts in vaccine preservatives like thimerosal). Fears of a vast conspiracy between Big Pharma and corrupt government officials to cover up the effects of a global wave of vaccine injury circulated on the newly emerging internet. Vaccination uptake rates worldwide began to fall, raising the spectre of a resurgence of plagues like pertussis that formerly killed tens of thousands of children per year.

In the shadow of the rising numbers of autism, stories began to circulate on the internet about babies that seemed to be developing typically until they received a routine immunization for measles, mumps, diphtheria or whooping cough. Parents described the light going out of their children’s eyes the moment the needle punctured their skin, followed by violent convulsions, piercing cries, fever and the sudden onset of severe digestive disturbances. Rumours of a new and terrifying form of autism, marked by dramatic regression, raced through online forums. Parents referred to their sons and daughters as having been kidnapped, as if a thief–dressed in a pediatrician’s coat–had stolen them away in the night.

The official explanation for the rising prevalence estimates was that the diagnostic criteria for autism had been gradually broadened over the years. Heightened public awareness and improved case finding were some of the key terms used. To a worried mother searching her son’s or daughter’s face for a telltale failure of eye contact, they might as well have been speaking Latin. How could a formerly rare and obscure syndrome allegedly rooted in genetics suddenly seem to be everywhere at once? Was autism a congenital and incurable developmental disorder rooted in the complexities of the human genome, or a toxic by-product of a corrupt medical establishment driven to seek profit at all costs?

Parents in groups like Defeat Autism Now! And Talk About Curing Autism were caricatured as poorly informed, anti-science “denialists.” Still, they were better informed about the state of autism research than the outsiders presuming to judge them. They obsessively tracked the latest developments on electronic mailing lists and websites. They kept meticulous records of their children’s responses to the most promising alternative treatments and became amateur researchers.

Funding agencies long neglected research because the condition was believed to be so rare, ballooned by government and private funding groups like the Simons Foundation. Attempts to map the whole genomes of a thousand individuals with two or more autistic children identified more than a thousand candidate genes and hundreds of de novo mutations associated with autism. Epigenetics, the science of factors that mediate interactions between genes and the environment, has found triggers for autism that grow daily, prompting some to write “Being alive linked to autism”. However, the long-promised transformative moment that would improve the quality of their children’s lives somehow never arrived.

Even the most common genetic factors discovered were found in less than 1% of children sampled. One hundred kids with autism could have 100 different genetic causes.

The CDC in the US estimates that one in sixty-eight school-aged children in America is on the autism spectrum. Many autistic adults were not exercising the strengths of their atypical minds at tech companies, and many were unemployed and struggling to get by with disability payments. Parents had to sue their school boards to obtain appropriate classroom placement. Very little of the money raised by advocacy groups addressed the daily needs of autistic people and their families. By focusing primarily on funding searches for potential causes and risk factors, these organizations reinforced the idea that autism is a historical anomaly – a distinctive problem of modern times that could be solved by a discovery that seems perpetually just around the corner.

Newly diagnosed adults, however, were engaged in a different conversation about navigating and surviving in a world not built for them. By sharing the stories of their lives, they discovered that many of the challenges they face daily are not “symptoms” of their autism, but hardships imposed by a society that refuses to make basic accommodations for cognitive disabilities as it does for physical disabilities such as blindness and deafness. After 70 years of autism research, why do we seem to know so little about it?

The concept of neurodiversity is that conditions like autism, dyslexia and attention-deficit hyperactivity disorder should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. The spectrum model of autism and the concept of neurodiversity are ancient ideas proposed by Hans Asperger in his first public lecture on autism in 1938.

Most astute interpreters of autistic behaviour are autistic people themselves rather than their parents or doctors.

In 2007, Amelia Baggs posted an extraordinary video on YouTube called “In My Language,” which has been viewed more than a million times. At first, the camera follows Baggs, who finds using spoken language difficult but can type 120 words a minute – as she presses her face into a book, rubs her fingers across her keyboard, flaps her hands, hums to herself, and bobs a Slinky up and down. A clinician would likely say that she is exhibiting self-stimulating behaviour, one of the classic signs of autism. But in the second part of the video “A Translation”, Baggs clarifies that she is not sharing these intimate glimpses of her life as a plea for pity. Her intent is more subversive: celebrating the joy of her existence on her terms. “My language is not about designing words or even visual symbols for people to interpret, but it is about constantly conversing with every aspect of my environment, reacting physically to all parts of my surroundings. Far from being purposeless, how I move is an ongoing response to my surroundings”. Using a text-to-speech program, a few clips offer a glimpse into a mind so profoundly humane.

Place autistic people in a social environment constructed to eliminate sources of sensory overload and anxiety while maximizing opportunities to relax, enjoy being themselves and make connections with one another. It can teach more about the day-to-day realities of being autistic than reading a hundred case histories. The challenges faced by autistic people in a society not built for them, while turning off the pernicious stereotypes that autistic people lack humour and creative imagination, can be very instructive.
The notion that the cure for the most disabling aspects of autism will be found in supportive communities is slowly being accepted.

DESIGNS FOR A NEURODIVERSE WORLD
What is autism? Eight decades after Asperger saw his first patients seeking to explain their behaviour, many aspects of this question remain open. However, there are a few points on which clinicians, parents, and neurodiversity advocates agree.

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 behaviours and needs that manifest differently 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 most significant minorities in the world. There are roughly as many people on the spectrum in America as there are Jews.

A thorough review of history also vindicates that autistic people have always been part of the human community, though they have been relegated to the margins of society. For most of the twentieth century, they were hidden behind a welter of competing labels – Sukhareva’s “schizoid personality disorder,” Despert and Bender’s “childhood schizophrenia,” Robinson and Vitale’s “children with circumscribed interests,” Grandin’s initial diagnosis of “minimal brain damage,” and many other labels such as “multiplex personality disorder,” which have fallen out of use.

In the wake of the vaccine controversy, however, 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.

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 ancient 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 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 would 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 movement proves. But first, we must learn to think more intelligently about people who think differently.

NEURODIVERSITY
One way to understand neurodiversity is to consider the human operating system instead of relying on diagnostic labels like dyslexia or ADHD. The brain is, above all, a marvellously adaptive organism adept at maximizing its chances of success even in the face of daunting limitations.

Just because a computer is not running Windows doesn’t mean 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 Internet transformed the world in a single generation because it was explicitly built to be “platform agnostic.” The internet doesn’t care if your home computer or mobile device runs Windows, Linux, or the latest version of Apple’s IOS. Its protocols and standards were designed to work with all of them to maximize the potential for innovation at the edges.

In recent years, a growing alliance of autistic self-advocates, parents, and educators who have adopted the concept of neurodiversity have proposed several innovations that could lay the groundwork for an inclusive world designed to accommodate 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 could also customize their personal sensory space by wearing noise-reducing headphones, sunglasses to avoid glare, and other easily affordable and minimally disruptive accommodations.

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 the use of strobe lights and pyrotechnics on stage was limited, quiet areas were set aside in the theatre 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 have begun offering sensory-friendly showings of movies in theatres nationwide. This is not only a humane idea, it’s clever marketing too, because the families of the autistic 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.

Digital technology has opened new educational horizons for adapting teaching materials to suit learners with diverse learning styles. Some students learn best by reading, while others benefit most from oral instruction; with tablet devices and customizable software, the same core curriculum can support both. The National Centre on Universal Design for Learning is the leader in this area. It offers free guidelines and resources to help teachers adapt their curricula for students with learning differences.

More emphasis should be placed on early childhood education when a child’s learning style first emerges, as a child’s experiences in school can significantly impact their future success or failure. Too often, individual programs focus exclusively on addressing a child’s deficits instead of on the strengths that teachers can employ to engage the child’s interests and help build confidence.

Many individuals with autism 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 showcase their latest projects, has been a boon to young people on the autism spectrum.

Neurodiversity is also being embraced in companies like Specialisterne, founded in Denmark, which employs individuals on the autism spectrum to utilize their unique strengths in the technology industry. Specialisterne has been so successful that it opened satellite offices in the United Kingdom and the United States and recently forged an alliance with German software company SAP to serve the needs of India’s rapidly growing technology industry. Instead of putting potential candidates through gruelling face-to-face interviews, Speciaisterne lets them cut loose with a table full of Lego Mindstorm Robots. These little machines can be programmed to perform simple tasks. Thus, candidates can showcase their skills rather than having to explain them.

Neurodiversity activists have also pushed for more autistic representation in policymaking, using the slogan “Nothing about us, without us.” Fund-raising 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. Many individuals on the autism spectrum are well-suited for academic science. They contribute to science because of their autism, not despite it.

A group called the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) is collaborating with self-advocates and researchers to release a comprehensive toolkit designed to inform patients and healthcare providers about the unique needs of autistic individuals within the healthcare system. ASAN’s leadership training program has demonstrated the potential of peer mentoring for young people on the Spectrum.

Building a world suited to all kinds of minds’ needs and special abilities is starting. However, 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 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.