The book Neurotribes – The Legacy of Autism and the Future of Neurodiversity by Steve Silberman has formed the backbone of this history. He starts with Henry Cavendish and continues through to about 2015, giving an excellent chronicle of the entire spectrum of autism with special reference to high-functioning Asperger’s people.
I have plagiarized Mr. Silberman heavily, abstracting some, reorganizing some but often writing verbatim what he has written. I am very indebted to him.
Henry Cavendish
Paul Dirac
Leo Kanner & Hans Asperger
Hugo Gernsback & Nicola Tesla
Science Fiction & Ham Radio
The Internet
Bernard Rimland, Ole Ivar Lovaas & Autism Associations
Britain – Lorna Wing & Oliver Sachs
The Rain Man Effect
DSM
The Vaccine Wars
Temple Grandin
Jim Sinclair
Asperger’s Since 2000
The curious fascination that many autistic people have for quantifiable data, highly organized systems, and complex machines run like a half-hidden thread through the fabric of autism research. Asperger may have been the first clinician to notice that his patient’s imaginations occasionally anticipated developments in science by decades, forcing him to amend his statements that their interests were “remote” from real-world concerns. Many turned their youthful obsessions with science fiction into a career in science. For many people on the spectrum in the years when they were still invisible to medicine, science fiction fandom provided a community where they finally felt like savvy natives after years of being bullied and abused by their peers for seeming naive, awkward, and clueless.
Another community that enabled autistic people to make the most of their natural strengths was amateur radio. By routing around the face-to-face interactions they found so daunting, even people who found it nearly impossible to communicate through speech were able to reach out to kindred spirits, find potential mentors, and gain the skills and confidence they needed to become productive members of society.
SCIENCE FICTION
From Hugo Gernsback’s Amazing Stories grew pulp fiction and the first fandom in the modern sense, with its own elaborate customs, art forms, specialized jargon, conventions, and absurdly bombastic internecine warfare. This fractious andd fertile milieu nurtured the careers of many writers who went onto mainstream fame, including film critic Roger Ebert and screenwriter Leigh Brackett, celebrated for her work on The Big Sleep, the Long Goodbye, and The Empire Strikes Back. Other fans became science fiction immortals themselves, including Ray Bradbury, Isaac Asimov, Frederick Pohl, and Ursula K. LeGuin.
Most importantly, magazines like Amazing Stories and Weird Tales fired up the imaginations of those who turned the extravagant visions of their favourite authors into cold fact. The original members of the British Interplanetary Society, founded in 1933 to promote space exploration, were avid readers of the pulps. Arthur C Clarke observed in 1948, that many American scientists were also fervent fans, and that “aeronautics would never have reached the stage it has now if it wasn’t for science fiction, which has done much to break down the psychological barrier that retard our progress.”
Darko Suvin, a leading scholar of the genre, described the subversive impulse at the heart of science fiction as an expression of “cognitive estrangement” from the mainstream. Fandom tapped into a deep yearning to rise above the circumstances of humdrum existence and become part of something noble, people informed, and not widely understood. The thrill of being part of something that few people could appreciate was particularly keen for those who had spent their lives being ridiculed. No one could make you a fan – or prevent you from being one – but yourself and no one could judge you but your peers of choice: your fellow ”fen”. Early fans indulged these newfound feelings of confidence and superiority to the hilt, referring to the clueless nonfans who ran the world as ”mundanes”.
Unlike cult followings based on sports teams or rock stars, science fiction fandom was rooted in an essentially solitary activity: reading. Traits typically viewed as pathological or pathetic in the mainstream (like obsessing over trivia while accumulating vast hoards of treasured ephemera) were rewarded in the community as signs of “trufan” commitment. Fandom offered what every homesick space child yearned for: membership in an elite society of loners united by their belief in the future. For those who had felt like exiles their whole lives, forced to live among strangers, becoming a fan was like finally coming home.
In 1940, a Canadian, A.E. van Voyt raised the bar and inaugurated the golden age of science fiction. He portrayed “normal” human beings not as saviors but as the enemy. His tropes echoed through later generations of science fiction: the political machinations in Dune, Star Trek’s half-Betazoid counselor Deanna Troi, the hunt for rogue replicants in Blade Runner, the mutant superpowers of the X-Men. For first-generation fans, they saw a reflection of their own predicament in the tale of the superintelligent, supersensitive, and profoundly misunderstood mutants struggling to survive in a world not built for them.
Claude Degler carried this notion further. He was obsessed with electricity at a very young age and plunged into science fiction. Precociously bright, Degler made the honor roll in high school, but when he was 15, his anxiety, depression, and violent outbursts – exacerbated by constant bullying – resulted in his expulsion. In 1936, he was committed to the Eastern Indiana Hospital for the Insane. After reading van Voyt’s Slan, his true destiny became clear. He and his fellow fen were “star-begotten” mutants trapped behind enemy lines. Science fiction was the first stirrings of a geek uprising against the mundanes who had oppressed them for so long. “Fight to make the world safe for science fiction”. He contributed to a dizzying array of publications in the 1940s and advocated the formation of all-fan households called Slan shacks, where his comrades could pursue their passions with minimal interference from pesky mundanes. One in Battle Creek, Michigan attracted fans from everywhere, to savor “the feeling of closeness, of being able to be open in our ideas”. Slan shacks popped up all over the US and United Kingdom. He fell out of favour when it became obvious that many of the organizations existed only in his brain. But there was more than a grain of truth in Degler’s insistence that science fiction fans were mutants struggling to survive in the margins of a society that did not understand them. A significant minority of his fellow fens would likely have been eligible for a diagnosis of Asperger’s syndrome had one been available. For people on the autism spectrum, the alternate universes of science fiction may have felt less alien than the baffling sea of mundania in which they found themselves marooned.
HAM RADIO
Many fans were also ham radio operators, and there was a significant crossover between the two subcultures. A significant number with keen interests in science and engineering ended up working in menial jobs because of their limited social skills. Fandom was a community that was unusually accepting of individual quirks and differences.
Gernsback’s amateur radio network turned out to be a boon for those most likely to yearn for an Isolator. One ham alone in a garage with a spark transmitter was a nerd – but a network of hams was a force to be reckoned with. By chaining stations together in relays, a Chicago amateur could “work” his equivalent in Christchurch, passing messages around the globe. Planet earth suddenly became a very small and convivial place for a ham.
During WWII, the British spy agency MI8 secretly recruited a crew of teenage wireless operators to intercept coded messages from the Nazis. By forwarding these transmissions to the crack team of code-breakers at Bletchley Park led by the computer pioneer Alan Turing, these young hams enabled the Allies to accurately predict the movements of the German and Italian forces.
With the rise of wireless, the scattered members finally had a way to become a collective force in the public sphere. Ham radio was an activity that rewarded fascination with apparatus, systems, and complex machines, and amateurs with keen memorization abilities had an advantage because all hams in the United States were required to learn Morse code to earn their FCC licenses until 1990. With parts available by mail at reasonable prices, it was an affordable hobby that could be pursued in solitude Hams who struggled with spoken language could avoid talking altogether by communicating in code. (a photo of an early gathering of hams showing two men sitting across a table from one another, communicating by tapping out dots and dashes on milk bottles with spoons). But those who enjoyed gabbing away could “chew the rag” with other hams for hours, employing a lexicon as witty and ritualized as the jargon of fandom. The culture of wireless was also a strict meritocracy where no one cared about what you looked like or how gracefully you deported yourself in public. If you knew how to set up a rig and keep it running, you were welcome to join the party.
A new world opened up to him. First, he gets a new name – his radio call letters. Thenceforth he has a new personality and new social status.
Wireless also offered ways into the job market for people who couldn’t depend on their ability to charm interviewers or cultivate networks of in-person contacts. The society of hams also enabled shy introverts to study the protocols of personal engagement from a comfortable distance. They learned about communication between people – the give and getting process, which is what communication is all about.
TV made its public debut in 1928, 172 spacecraft left the earth’s surface in 1967, and a new generation of visionaries raised on do-it-yourself electronics and pulp science fiction was laying the groundwork for a global network that would make the wireless revolution look quaint.
INTERNET
John McCarthy. The modern digital age began at the Massachusetts Institute of Technology (MIT) in the late 1950s, where a mathematician and engineer named John McCarthy offered the first undergraduate course in computer programming. He pondered ways to make the hulking mainframes of the day program in creative ways so they could act in creative ways, learn to adapt to their environments, be linked in complex networks, and evolve to become smarter on their own. To describe this dynamic vision of computing, he coined the term artificial intelligence (AI).
McCarthy was a legendary eccentric on a campus full of eccentrics. He had a habit of furiously pacing while thinking; if he was asked a question, he might just walk away without saying goodbye, only to reappear several days later with an answer as if the conversation had never been interrupted. If his colleagues wanted him to read a paper, instead of bringing it to his office where it would inevitably get lost, they would leave a copy on their own desk, McCarthy would eventually stroll in, pick it ups, and march off to read it, usually without uttering a word. First encounters with McCarthy were unnerving: His greeting consisted of an expectant stare, No words at all. Discourse by his visitor brought a set of mumbles, which slowly increased in volume and clarity. Only when his mind reached the surface was something similar to normal conversation possible. His mind was like a vehicle streamlined for rapid passage through the fluid of thought, capable of maneuvering with little outside friction. But in the social terrain, his streamlined concentration became awkward and unwieldy.
Physically uncoordinated, he still took up mountain climbing, sailing, and piloting private planes. He would coach himself aloud through each step of a final approach – “prop feathered. mixture full rich .. . airspeed check .. . lay, now we’ll do this – only realize that he had already landed.
But his life’s work was never in doubt. When he was 8, he decided to become a scientist. His parent’s idealism infused his hope for computers as facilitators of democracy at a time when many left-wingers had a visceral distrust o technology. In high school, McCarthy taught himself calculus from college textbooks. At fifteen, he enrolled at the California Institute of Technology. There, he began thinking of designing machines that could simulate the human acquisition of Knowledge. McCarthy was instrumental in developing the concept of time-sharing, which allowed multiple users to gain access t centralized computing resources through a distributed network of terminals. He advocated installing a terminal in every home, convinced that someday it would be commonplace for people to use them to read instantly updated news, order books, buy plane tickets and reserve hotel rooms, edit documents remotely, and determine the efficacy of medical treatments. McCarthy’s students devised the first program that enabled a computer to play chess well.
McCarthy’s most lasting contribution to his field was Lisp, a high-level programming language that enabled AI researchers to represent an unprecedented range of real-world events in their code. Unlike most programming languages of its vintage, it is still in wide use. McCarthy was ready for a change in the early 1960s when Stanford offered him a full professorship. McCarthy thrived in the hothouse of innovative ideas and technology that would soon be dubbed Silicon Valley, launching the famed Stanford Artificial Intelligence Laboratory (SAIL). By the early 1980s, he was already living in the future he foresaw a decade earlier. He could fetch his email, listen to the radio, revise and spell-check a paper on a remote server, play chess or Go, run searches on stories moving over the Associated Press wire, or fetch an up-to-date list of restaurant recommendations from programmers all over the world.
He certainly displayed many of the classical features of Asperger’s syndrome: his brusqueness, his single-minded focus to the point of being rude, his physical clumsiness, and his habit of coaching himself aloud when under stress. His many positive traits were a fascination with logic and complex machines, a gift for puns and aphorisms, an uncompromising personal ethic, and the ability to solve problems from angles that his more socially oriented colleagues missed. He was able to carve out a niche in an emerging field that was perfectly suited to his strengths while being tolerant – indeed, appreciative – of his many eccentricities.
His labs at MIT and Stanford were elaborate playgrounds for his extraordinary mind. They became magnets for other geniuses who were equally committed to the vision of a world empowered by access to computing – including Steve Jobs and Steve Wozniak, who went on to found Apple.
The culture of Silicon Valley began adapting to the presence of a high concentration of people with autistic traits even before the term Asperger’s syndrome was invented. Jean Hollands, a therapist wrote The Silicon Syndrome, about navigating “high-tech relationships” with a distinctive breed of intensely driven “sci-tech” men who loved to tinker with machines, were slow to pick up on emotional cues, had few if any close friends outside their professional circles, approached life in a rigorously logical and literal fashion and addressed problems in intimate relationships by “seeking data.” She received letters from the wives of engineers, coders, and math and physics professors all over the world. Autism was never mentioned, but 10 years later, could have been swapped and barely changed another word in the text.
Ultimately the future belonged not to the big mainframes and “dumb terminals” McCarthy loved, but to the smart little machines being soldered together in garages. The task of claiming the power of computing for the many remained to be done by Internet pioneers like Vint Cerf and Tim Berners-Lee – and an autistic engineer who launched the first social network for the people in a record store in Berkeley.
Lee Felsenstein. He had engineering in his blood. His grandfather, William T Price, made a fortune by shrinking the design of diesel engines so they could fit into trains and trucks. He was also on the autistic spectrum. In 3rd grade, Lee sketched exhaust pipes and compressors while coming up with schemes for redesigning automobiles to reduce air pollution. When a teacher accused him of daydreaming in class, he replied, “I’m not daydreaming, I’m inventing.” At 11, he set up a crystal radio set and first saw a computer at a science museum in Philadelphia and hung out near the machine all day. He then took a correspondence course in radio and TV repair with lessons on how to run your own business. He started repairing broken TVs in his basement and cannibalized glowing tubes and busted consoles for his experiments.
At the University of California at Berkeley, he became the geek-in-residence for war protests and free speech movements. At one demonstration when police were preparing for mass arrests, he was told to build a police radio. Instead of using post-it notes to organize or leaflets to inform students of relevant issues, he realized that old broadcast methods could be better done by a decentralized, user-driven computer system.
He didn’t know that he was autistic and the psychiatric establishment didn’t acknowledge that people like him existed. His girlfriends complained that he didn’t respond appropriately in social situations and that he didn’t feel at home among people. By 1968, the stress of being an undiagnosed autistic in the middle of a cultural revolution had taken a heavy toll. After a crash into major depression, dropped out of university, started psychotherapy, and took a job as a junior engineer.
By reading manuals, he taught himself state-of-the-art programming punching holes in paper tape. There was no operating system and no software. At a conference, a researcher at Stanford named Doug Engelbart described ways to use computers, not to replace human intelligence, but to augment it. He set forth the fundamental elements of the modern digital age: graphical user interfaces, multiple window displays, mouse-driven navigation, word processing, hypertext linking, videoconferencing and real-time collaboration. These concepts – refined by Alan Kay and others at Xerox PARC – inspired Steve Jobs to build the Macintosh, the first personal computer (PC) designed for the mass market.
Feldsenstein believed that computer networks could perform many of the functions of personal filing systems much faster and better, and they didn’t forget anything. He was also fascinated by the use of tools to facilitate conviviality – one of the many aspects of social interaction that he had always found difficult and confusing. With two fellow programmers, they needed an affordable computer sufficiently powerful to do the job. They wrangled the long-term lease of an SDS 940 (retail cost $300,000) from the Transamerica Corp – 24 feet long and required a fleet of air conditioners to stay cool.
For people who struggled to express themselves in face-to-face situations like Felsenstein, computer networks held the potential for not just “augmenting” communications, but making is possible, period – minus the stuff that normally made conversation so arduous, such as eye contact, body language, tone, and the necessity of making a good impression. The practical constraints of communicating online also required many aspects of social interaction that are normally implicit to be made explicit. Emoticons like :-), were like social captioning for people who have trouble parsing sarcasm and innuendo.
They created the first electronic bulletin board (called an “information flea market) in history, in 1973 (the first wide-open door to cyberspace) at the top of a staircase at Leopold’s Records on Telegraph Avenue in Berkeley. Information trickled across the Bay at a measly ten characters a second via an Oakland telephone exchange that could make a free all-day call to San Francisco. Everyone who ambled up the stairs became interested in using it – to find musicians for bands, exchange a myriad of items and services, show poems and writing, solicit rides, protest the war, gay liberation, the energy crisis, and sell things. Instead of being a community bulletin board, the network quickly became “a snapshot of the whole community”. But without a sustainable economic model, they were unable to support the considerable cost of maintaining the SDS 940.
The smashing success of the project was gratifying for Felsenstein, because of a feeling of belonging to a community was precisely the thing that had always eluded him – even in the counterculture that was supposed to offer it to those who had never fit in anywhere else. “As a kid, I had a feeling that I was ensconced in some sort of alcove, behind a wall, and that the street was out there. I could see everyone else walking around engaging in life, but i couldn’t go out there. So what I was trying to do with the Community Memory was trying to expand the alcove.”
He moved on to other projects, including designing the Osborne I – the first truly portable personal computer, 3 years before the MacIntosh. But he continued to struggle with depression and an inability to read other people’s intentions despite years of psychotherapy. Finally, in the 1990s, Felsenstein heard about Asperger’s syndrome and recognized not only himself but other members of his family. Reading about autism online, he came to think of his Asperger’s as more than just a set of deficits, but as his “edge” – the edge he inherited from his grandfather, which he has put to work in his career in technology for 40 years.
The text-based nature of online interaction eventually provided the foundation for something Leo Kanner couldn’t have imagined: the birth of the autistic community. But two things had to happen first. Kanner’s notion that autism was a rare form of childhood psychosis would have to be permanently laid to rest. Then they would have to overturn the notion that they were the victims of a global epidemic.
Bernard Rimland. An obsessively curious Navy psychologist named Bernard Rimland wrote a book called Infantile Autism. With an autistic child, he was a self-taught outsider in the field. He firmly established autism as an inborn condition based on genetics and neurology rather than the complexities of the developing psyche. The book’s popularity inspired him to start the National Society for Autistic Children, which helped end decades of shame and isolation for families like his and lobbied for legislation based on the principle that all children have the right to an education, including those with developmental disabilities. By crowdsourcing effective treatments, he gave parents a network of hope and progress at a time when research in the field was at a virtual standstill because it was still believed to be so rare.
He made direct communication with parents and challenged the authority of the psychiatric establishment. His E-1 form was the first standardized clinical tool for an autism assessment. Up to that point, the diagnosis was made strictly on the basis of subjective observation by clinicians schooled in Kanner’s and Eisenberg’s methods. Children who didn’t precisely fit Rimland’s version of Kanner’s model got only a diagnosis of “autistic-like.” In this act of winnowing, Rimland was again following in the footsteps of his mentor, who told him that nine out of ten children sent to his office with an autism diagnosis by other clinicians were not “true cases.” He planted the seeds of a revolution.
Like Kanner, he bitterly opposed the notion of autism as a continuum. He had controversial theories that the unified condition called autism is composed of many distinct subtypes – anticipating major shifts in mainstream science by decades. But by promoting the hope that autistic children could be fully “recovered” from autism with biomedical treatment, he diverted the energy and focus of the parent’s movement he helped create into an endless quest for a cure.
He adopted Linus Pauling’s theories of orthomolecular medicine – instead of using drugs they manipulated water, vitamins, minerals, protein, and salt. Pauling had great credibility as one of the few two-time Nobel winners in history to transform the supplement business from a marginal enterprise serving health food stores into an alt-powerhouse with annual sales rivaling the pharmaceutical industry – minus the pesky Food and Drug Administration (FDA0 regulations.
The hardest thing to come by for parents of autistic children in the 60s was hope. Clinicians had little to offer beyond the standard advice to institutionalize the child and quietly remove their pictures from the family album. Parents determined to raise their children at home were condemned by trapping them in a psychically toxic environment. Most psychologists in America were still convinced that they were constitutionally incapable of learning. Rimland used the terms training and conditioning. He also noted that little had been published about true cases grown to maturity.
Rimland also became a believer in megadoses of vitamins, encouraged by Linus Pauling’s writing. Parents gave testimonials about their effectiveness. Potent multiple B-vitamins, several grams of vitamin C and niacinamide, pyridoxine, and pantothenic acid (other B vitamins) were added. Magnesium was eventually also added to the advice of celebrity nutritionist Adele Davis. The drug was marketed as Deaner by Riker Pharmaceuticals. Parents rated the child’s progress with biweekly reports charting speech, eating patterns, tantrums, and alertness.
In the pharmaceutical industry, the gold standard of drug development is the double-blind placebo-controlled trial. Inevitably, both groups of patients will show some improvement because of the placebo effect. At the root of this is that the attention in an environment of care produces beneficial changes in the mind and body of the patient even in the absence of the active drug. The mere act of swallowing a pill triggers cascades of hormones and neurotransmitters that can reduce pain and inflammation, enhance motor coordination, boost brain activity, lift mood, and improve digestion. These effects are pervasive as if the body contains a self-healing network that is activated by the knowledge that one is receiving care. (Exercise and meditation also prompt this network into action). In the volunteers in the placebo group and the experimental group show comparable amounts of benefit, the FDA judges the drug to be ineffective.
But Rimland decided not to use this well-established model of drug testing. With 45% of parents reporting that the vitamins “definitely helped” their children, Rimland was thrilled. He deflected all criticisms in a non-scientific argument as all data was derived from subjective reports by parents and physicians who were likely to be enthusiastic about the project. Statisticians with access to the raw data concluded that no reliable information about the reaction of the patients to the vitamins could be obtained using Rimland’s computer-clustering scheme. The design of the experiment – with parents as evaluators – was anything but “blind” and a perfect incubator for placebo effects. Rimland’s description was that the vitamins were a “new psychic-energizer”, exactly the phrase used by Riker Laboratories used to promote them in ads in medical journals.
Deaner was aggressively marketed for a wide variety of fuzzily defined symptoms, including “problem” behavior, emotional instability, hyperactivity, and underachievement at school. The American Medical Association (AMA) was less enthused and issued a cautionary note about Deaner. The litany of vague complaints for which it was commonly prescribed “are characterized by the difficulty in their evaluation, their spontaneous fluctuations, and their great susceptibility to suggestion.”
In other words, Deaner was the perfect placebo. It was also a gold mine for Riker Laboratories until it was finally taken off the market by the FDA in 1983 after studies concluded that the drug didn’t even rate as “possibly effective” and also put children with epilepsy at heightened risk for grand mal seizures. Supplement manufacturers quickly stepped into the breach, promoting a mixed berry flavor called DMAE, combining it with fatty acids, soy, and other health food staples
Rimland eventually encouraged his growing army of parent-experimenters to try several treatments at once, making it nearly impossible to tease out the benefits and side effects of any single one. This gave the parents a tremendous sense of hope and momentum at a time when the mainstream science of autism was advancing at a snail’s pace. He grew more isolated from his colleagues while being regarded as a lone voice in the wilderness by the parents in his network. Things finally came to a head at NSAC (by then called the Autism Society of America) when Rimland called for a motion requiring all members to put their children on a high-dose vitamin B-12 regimen immediately after diagnosis. Parents rebelled and, instead of backing down, Rimland went all in and resigned. He no longer had the clout to make such a power play and was voted off the board of his own organization. The once-strong NSAC had been rented in two.
Ole Ivar Lovaas. A psychologist from Los Angeles, he was also obsessed with the same obscure childhood disorder. He had no patience with psychoanalysis or the tendentious speculations of theory-based psychiatry. He developed behavior modification and became a mentor to a generation of psychologists, therapists, and teachers at UCLA. Rewards and punishment were used in a tough-minded approach to teaching these children skills in their home that would enable them to stay out of institutions and live semi-independent lives. Both he and Rimland believed that the permissive, indulgent attitude toward autistic children was damaging. Self-stimming was no longer tolerated. By forming an alliance and reaching out directly to parents, they gained a level of credibility and influence far beyond that gotten through peer-reviewed channels.
National Society for Autistic Children. One nonverbal autistic child put together a jigsaw puzzle, his mother accidentally made a mess of it, and the child quickly reassembled the puzzle with the pieces upside down, though he could no longer see the pattern they formed as a cue to their proper placement. He started speaking again and was able to instantly name the day of the week for nearly any date in the past or future. He would surprise his mother by recalling things that the family had done years before. Once the diagnosis of autism was made, his mother started the National Society for Autistic Children. They talked of ways for parents to work together effectively to demand access to education and other services for their children. Chapters of the NSAC sprang up all over the country. They knew that their children needed help, that no one knew what was wrong with them, and that leaders in all the helping professions were blaming the parents for their children’s disability. Naturally, they were angry. Medical lending libraries were established all over the country. The NSAC helped reframe autism in the minds of professionals from a form of childhood “emotional disturbance” to an inborn disability that required life-long care and support.
Sign language turned out to be a popular medium of communication at some institutions even for hearing students. Too much emphasis was being placed on teaching autistic children to speak when what was truly essential was enabling them to communicate.
For years, the society’s bimonthly newsletter was the only source of breaking news in the world of autism for families. Autism became accepted not as a single clinical entity but was composed of multiple distinct subtypes. Autistic intelligence – savant skills like enhanced ability in music, memory, art, mathematics, science, and technology became appreciated – very young children who could speak and write in multiple languages, had total recall for various kinds of statistics, could instantly identify a note played on a piano, were able to calculate square roots in their heads, had precocious abilities in drawing, and were so aware of subtle aspects of their environments that they seemed to have ESP. And these were children who had all been branded as “profoundly retarded.”
Another child demonstrated the untapped potential of these children. “He reads and understands books on electronics and uses the theories to build devices . . . He understands the theory of electronics, astronomy, music, navigation, and mechanics. He knows an astonishing amount about how things work and is familiar with technical terms. By the age of 12, he could find his way all over the city on his bike with a map and compass. Joe is supposed to have an IQ of 80.”
Rimland theorized that the achievements of geniuses like Einstein, Newton, and world chess champion Bobby Fischer were related to the fact that these men “manifested signs – sometimes several signs – of autism. “It may not be too far amiss to suggest that some autistic individuals are incipient geniuses whose eccentricities are so severe and incapacitating that all but minimal participation in the ‘normal’ world is precluded.”
Eric Schopler launched Division TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) in North Carolina, the first statewide autism education program in the US and the model for many other progressive programs since.
At the second NSAC conference in 1970, a young autistic man spoke. Twenty-one-year-old William Donovan made clear that he was very aware of his environment, even when people assumed he was oblivious. “As an autistic child, I felt very uncomfortable. I tore up newspapers, pulled bedsheets off the beds, pulled books out of the bookcases, bounced cans and played with spinning tops, and broke every one of them. I would like to take this opportunity to tell you that I destroyed things because I couldn’t talk. I spun things because I couldn’t talk. It also made me feel good, of course. I hated going to school because classrooms were too confining. I didn’t like the idea of the other kids making fun of me and I didn’t want anyone to pass judgment on me as to how good or bad I was.” He described his teachers hitting him with rulers, locking him in a closet, and talking about him as if he weren’t there. He spoke in echolalia until he was ten because he couldn’t, not wouldn’t, talk normally.
He had been hired at a packaging factory. His first day of work was the happiest day of his life. He talked about his love of Charlie Brown and playing music. He concluded “I feel wonderful here today. I feel like the President. I hope all autistic children could grow up to be socially acceptable.
Donavan’s mother talked about how she had finally worked up the courage to take her son everywhere instead of hiking him in the house (or committing him to an institution, as she and her husband had been advised to do). “Never be embarrassed about taking them places.”
Both Rimland and Lovaas followed the path of making the children more “socially acceptable” and searched for an orthomolecular cure for autism. But parents were not interested in finding a cure, but instead wanted more services.
In 1974, West Virginia became the first state to specifically include autism in its mandatory public education laws, opening the doors of classrooms to hundreds of kids for the first time. The Education for All Handicapped Children Act was signed into law by President Gerald Ford in 1975, which became the Individuals with Disabilities Education Act (IDEA) that is in force today. Education services for adults were demanded. The traditional caretakers for autistic adults who were not in institutions were stay-at-home moms, and in the 1960s more and more women were entering the workforce.
Over time the NSAC’s focus on services and Rimland’s search for a cure would diverge, resulting in Rimland being voted off the board of his own organization.
After beginning with acquisition trials that used positive reinforcement to encourage behaviours (when the behaviours improved dramatically), Lovaas used extinction trials that withheld smiles and praise. But the children regressed and resumed beating themselves. The possibility that the children were responding in a comprehensible way to the bizarre behaviour of the people around them didn’t enter Lovaas’s mind. He added physical punishment (aversive stimuli) to try to extinguish bad behaviour. He was criticized but failed to heed the advice of other authorities. The sphere of behaviour targeted for punishment included hand flapping, rocking, spinning, and other forms of self-stimulation.
Researchers eventually discovered that autistic people sim to reduce anxiety, and also simply because it feels good. Harmless forms of self-stimulation may facilitate learning by freeing up executive-functioning resources in the brain that would otherwise be devoted to suppressing them.
Lovaas did not give up his extinction experiments. For tantrum behaviours, such as screaming, throwing objects, and hitting themselves, extinction was also used. But the results were disappointing. Loud noise over 100 decibels and eventually electric shock was added. Lovaas ventured that avoidance of pain generated contentment. He characterized it as a triumph of rationality over sentimentality – “punishment can be a very effective tool for behaviour change.” He added food and water deprivation. He was viewed by some as a “visionary”. This shaped public perceptions of autism for decades.
Many NSAC parents refused to use aversives.
Lovaas extended his theories to the “Feminine Boy Project”, in men and women who applied for gender reassignment surgery and wanted to see if operant conditioning could be employed as an early intervention in cases of gender confusion. He targeted the behaviors for extinction including “limp wrist” “swishy gait”, the girlish “hyperextension of the limbs in moments of exuberance, and prissy declarations like “goodness gracious” and “oh, dear me.” Masculine behaviors were rewarded and feminine behaviors punished. Their success turned into a cash cow for UCLA. Their star patient hanged himself at 38, after decades of depression.
The fundamental view became that it is easier to change a child’s behavior than it is to destigmatize that behavior in society – whether it be limp wrists or flapping hands.
The ethical debate raged about whether intentionally inflicting pain in the name of treatment is a way to treat human beings, even if they are autistic and self-injurious. In 1988, the Autism Society of America (ABA) banned aversive techniques. But aversives were promoted well past that – withholding food and administering physical punishment to modify behavior – still are used to the present day, even in the face of public outcry against their use.
Lovaas became disappointed that he produced no sudden cures. He learned that even self-injurious children were communicating in their own ways. Exuberant use of echolalia turned out to be a distinctively autistic way of acquiring language. Many of the behaviors he had put children through hell to extinguish were attempts to find channels for self-expression. But one thing Lovaas never changed his mind about was that the best hope was for them to become “normal” – purged of all traces of autistic behavior. He claimed that it was essential to insulate his autistic subjects from exposure to other autistic children, calling it the “kiss of death”. His program entailed a level of commitment and support that was beyond the reach of most families. A documentary claimed that, without his treatment, more than 95% of autistic children will require custodial care for the rest of their lives.
Other long-time experts in the field, remained skeptical. He was accused of front-loading his data by excluding “low-functioning” children while favouring those with unusually high IQs. Families in his studies had more resources available to them. Calling autistic children “the kiss of death” in a classroom could result in kids all over the country being denied an education. Independent researchers have never been able to replicate the extraordinary findings in his 1987 paper.
Steve Edelson. An undergraduate psychology/sociology major at UCLA, he had been raised as a Christian Scientist, a sect founded in 1875 by a self-anointed prophet named Mary Baker Eddy who believed that diseases are not healed by doctoring but by submission to God. Traditionally, Christian Scientists eschew most aspects of modern medicine, including drugs, tests, hospitals, and vaccines. Edelson’s curiosity about the neurochemistry of autism meshed perfectly with Rimland’s interest in orthomolecular medicine. Together, they authored a book called Recovering Autistic Children that became the bible of the Biomed movement, along with books like Jacqueline McCandless’s Children with Starving Brains.
The effort culminated in the launch of Defeat Autism Now! – a network of clinicians and alt-med practitioners on the GFCF diet and other treatments. At DAN! – sponsored events all over the country, “recovered” children were paraded in front of cheering crowds in an atmosphere befitting tent revival meetings. The fact that some children who displayed all the classic signs of early autism manage to grow up to become happy and well-adjusted adults without the benefit of elaborate elimination diets and gray-market drugs like secretin (a digestive hormone heavily promoted by Rimland that showed no evidence of benefit in placebo-controlled studies) had been forgotten. So had Kanner’s observation that one of the most crucial factors in determining the outcome of his patients was a sympathetic and tolerant reception by their teachers.
By then, the estimated prevalence of autism was spiking dramatically. Rimland looked beyond genetics for an explanation hidden somewhere in the toxic modern world. Eventually, he would zero in on vaccines and mercury as the most likely triggers of what appeared to be a rapidly accelerating epidemic of Kanner’s once-rare disorder, launching the Autism Wars in earnest.
For parents of newly diagnosed children, the turn of the millennium was a time of great fear and great hope. The fear that their children had been stolen away from them by a mysterious and terrifying disorder triggered by routine events like taking a recommended drug during pregnancy or inoculating them against measles.
The hope that ABA or the DAN! protocol could make their children normal and new technologies like DNA sequencing would uncover the elusive “autism gene” would make this baffling condition a thing of the past.
Catherine Maurice’s Let Me Hear Your Voice expounded the thought that if parents invested enough time, effort, and expense, children would lose their diagnosis. Teams of therapists were lined up to give children forty hours a week of one-on-one ABA at home, on top of speech and occupational therapy. Parents went to DAN! conferences and children seemed to benefit from some of the alternative treatments recommended by the members of Rimland’s network.
A new group called Cure Autism Now (CAN) proposed eradicating autism. It was one of a number of parents’ groups launched in the late 1990s with similar names (Talk About Curing Autism was founded in 2000) that focused on biomedical interventions and genetic research rather than on improving access to services for families. Focusing on the need for services seemed like an admission of defeat at a time when the possibility of vanquishing autism permanently seemed to be in the air.
Autism Speaks became the largest autism fund-raising organization in the world.
Britain. Britain had passed the Metal Health Act in 1959 in response to a series of scandals about overcrowding and inhumane conditions in the country’s mental institutions and homes of the “subnormal.” The Mental Health Act dismantled the legal apparatus that oversaw the certification process whereby patients were committed to hospitals against their will. It turned over the responsibility for the care of many people who would have been destined for institutions to local authorities. Thousands of children who would have been invisible in previous generations were dumped back into communities that had few resources and services for them.
Mildred Creek, a psychiatrist at the Great Ormand Hospital in London was the first such facility in Britain to offer state-of-the-art medical care to the children of families with limited means. She contended that “psychosis” among children was not rare. The constellation of traits shared by many of these children – a lack of “social awareness.” “rigidity of behaviour and irregularities of speech could have been lifted directly from Kanner.
Lorna Wing. She was a British psychiatrist who embarked on a quest to discover the kinds of assistance and services that would be most useful to families like her autistic daughter. When she was 6, she decided that what she wanted to do for a living was to figure out how things worked and studied biology, chemistry, and physics. At 16, she decided to study medicine. She married John Wing, a doctor with similar interests. Their first child had autism and one of her early teachers was Sybil Edgar who ran classes for autistic children in her house. With other parents, they founded what was to become the National Autistic Society in 1961. The logo adopted by the society – a puzzle piece – eventually became the universal symbol of autism parents’ organizations worldwide. The Sybil Edgar School found larger quarters and even the Beatles became involved with John Lennon a major donor.
As Elgar’s students became teenagers, she turned her attention to autistic adults, as she realized they were not “cured” and would require a living environment suited to their needs for the rest of their lives. “Children need praise and encouragement, but most of all they need the opportunity to continue their education and training so that they can maintain and extend abilities. . . and acquire occupational skills.” In 1972, the society launched Somerset House, the first residential facility and school in Europe for autistic adults.
These achievements put Lorna and her colleagues light years ahead of their American peers in the understanding of autism. They knew that autism might manifest itself in varying degrees of severity. She thought Kanner’s theories of refrigerator mothers was bloody stupid.
Michael Ritter conducted the first twin study of autism, providing proof of the genetic basis for the first time. He also untangled autism from schizophrenia, showing that they were separate conditions that only rarely occur together.
Using restrictive criteria, an attempt to determine the prevalence of autism came up with an estimate of 4.5 per 10,000, a very low number. This was replicated by other researchers and became the oft-quoted baseline against which all future autism prevalence estimates would be compared in the coming decades.
Lorna realized that the study left out most of the children likely to fall on the Asperger side of the line. She also had Asperger’s paper translated from German to English and realized that Asperger had seen the same thing in his Vienna clinic that she was seeing. They were kids that nobody knew what to do with. They didn’t fit into Kanner’s narrow box, were also highly intelligent but couldn’t pick up subtle social signals from the people they were talking to.
There was no diagnostic label on the books that would enable them to access psychiatric services. There were many shades and hues along the autistic continuum and all autistic people seemed to benefit from the same highly structured and supportive educational approaches, just as Asperger had predicted. Some children remained profoundly disabled while others blossomed in unexpected ways when given an accommodating environment and special consideration by their teachers.
Lorna then introduced a new diagnostic label – Asperger’s syndrome – as autism had so many negative connotations. She then wrote a case series in 1981 and changed continuum to the autism spectrum, indicating that the continuum shades imperceptibly into garden-variety eccentricity – all the features that characterize Asperger’s syndrome can be found in varying degrees in the normal population.
Oliver Sacks. He was a neurologist who was a precise observer of the world. He met a pair of identical twins named George and Charles Finn who had been variously diagnosed as autistic, schizophrenic, and mentally retarded. “Give me a date!”, they would cry in unison, and they would instantly calculate the day of the week for any date in a multiple-thousand-year span. As they executed these seemingly impossible cognitions, they would focus their attention inward – their eyes darting back and forth behind thick glasses. They would enjoy conversations that consisted solely of numbers. George would utter a string of digits, and Charles would turn them over in his mind and nod; then Charles would reply in similar fashion, and George would smile approvingly. Sacks was shocked that the twins were instantly calculating six-digit prime numbers, a feat that even a computer would have found difficult to pull off at the time. Consulting a book of prime number tables, he casually dropped an eight-digit prime into the conversation. Surprised and delighted, they had no problem and raised him with even longer primes. Yet George and Charles were incapable of performing simple multiplication, reading, or even tying their own shoes.
Then Sacks met Jose, a 21-year-old autistic man described as an idiot and unable to comprehend language or time. But when asked to draw a watch, he drew every feature of it, not just the time. Jose was fond of the non-human world, especially plants, and he drew flowers with feeling and great accuracy. Sacks realized that, instead of incommunicative, his patients were communicating all the time – not in words, but in gestures and other nonverbal forms of utterance, particularly among themselves.
He objected to “therapeutic punishment” used by the staff.
The Rain Man Effect
Kim Peek had been born with cranial bones that had failed to fuse properly in the womb, so at birth, part of his cortical tissue protruded through a baseball-sized blister at the back of his head. His brain also lacked a corpus callosum, the thick bundle of white matter that usually coordinates communication between the left and right hemispheres. A doctor told his parents that he was hopelessly retarded and belonged in an institution. But his parents refused.
As an infant, Peek began developing extraordinary cognitive capacities. By 18 months, he was memorizing every book his parents read to him, word for word. At three, he was able to look up words in the dictionary and sound them out phonetically. He was equally adept with numbers. He would read telephone books for fun and total up numbers on passing license plates. He was eventually able to read two pages of a book simultaneously – one with his right eye and one with his left – even of they were held upside down or reflected in a mirror.
Permanently excluded from school for being disruptive, he mastered the high school curriculum with the help of tutors by the time he was 14. Taking a job at a sheltered workshop for disabled people, he performed complex payroll calculations without benefit of an adding machine; one of his nicknames was “the Kimputer”. Yet he was unable to dress himself or attend to many of his basic needs without help. When he finally learned to shave, he would close his eyes in front of the mirror because he couldn’t stand seeing the sides of his face reversed.
Peek was a savant: a modern version of the prodigiously gifted “idiots” described by 19th-century clinicians. One was an intellectually disabled boy who had memorized The Rise and Fall of the Roman Empire – albeit in rote, mechanical fashion. Another boy was able to instantly multiply two three-digit numbers in his head even before the doctor could jot them down.
But Peek’s special abilities were not restricted to one or two narrow domains. He could also recall classical music scores note for note.
Peek’s father invited the director of the Bill films (played by Mickey Rooney), Barry Morrow, to enlist him in raising public awareness of intellectual disability. Peek reeled off the closing credits from Bill verbatim. As they went over mailing lists, Peek began correcting erroneous zip codes on the fly and was able to recite step-by-step driving instructions between any two points in the United States and Canada. He was also an inexhaustible font of sports trivia. To his parents and a small circle of friends, Peek was an eccentric marvel who spent most of his time alone in his room. To Morrow, he seemed like an extraordinary protagonist in search of a plot. He came up with the script for Rain Man, United Pictures was excited to make the movie and Dustin Hoffman loved the script.
Leading critics took issue with the film in ways that said more about the prevailing views of autism than they did about Rain Man. But audiences embraced the film, which went on to gross nearly $355 million worldwide, making it one of the most financially successful Hollywood releases of all time. In addition to winning Oscars for Best Picture, Best Actor in a Leading Role, Best Director and Best Screenplay, Rain Man earned a slew of other honors: two Golden Globes and a People’s Choice Award.
More importantly, the public for the first time started to understand autism. Autistic children became proud to be autistic. The film had made innumerable autistics visible – to their loved ones, neighbors, teachers, doctors, and to themselves. The character of Raymond Babbit made autism recognizable and familiar to everyone. Dustin Hoffman said that “the film touches something in us that I can’t explain. We all go through life not hugging quite as much as we’d like to. Something cuts us off . . . We’re always keeping a lid on our own autism.” Parents from all over the world wanted to know how to set up NSAC groups. An unprecedented surge of interest in autism spread through mainstream media. Autistics made appearances on Oprah and The Larry King show, performing feats of lightning calculation for the wide-eyed hosts. One film did more for autism than all of the people in the NSAC working worldwide had been able to do in 25 years. And Rain Man was just the beginning.
A strategic series of revisions to the Diagnostic and Statistical Manual on Mental Disorders, prompted by Lorna Wing and her colleagues in London, were chipping away at Kanner’s monolithic edifice from the inside. Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) and Asperger’s syndrome was added to the manual in 1994. By recasting the DSM criteria, it was possible for children who would have been excluded from support to get services previously excluded from them: access to education, behavioural therapy, insurance reimbursement, and other essential services. By the end of the decade, however, the startling rise in diagnoses – and the alarms in the media that autism had become an epidemic – took all by surprise.
Infantile autism had been added to the DSM-III in 1980, removing from the swamp of schizophrenia, and establishing it as the core of a new category of “pervasive developmental disorders”. Autism was framed narrowly in terms of its two cardinal signs: “pervasive lack of responsiveness to other people” coupled with “resistance to change”. The onset was specified as before 30 months,” which ruled out virtually all the kids who would be later diagnosed with Asperger’s syndrome. To accommodate kids who suffered a loss of skills after 30 months, there was “Childhood Onset Pervasive Developmental Disorder” (COPDD). It was described as being even rarer than autism. Few clinicians bothered with the ill-conceived diagnosis. In the 1987 DSM-III-R, the word infantile was finally gone for good and the COPDD diagnosis was also dropped. Crucially, the non-negotiable checklist had been replaced by a banquet of options to pick and choose from: at least 8 of the following 16 to include two items from A, one from B, and one from C. This ensured that fewer children would slip through the diagnostic net. The descriptions of these behaviors were also made less absolute. The new criteria could be applied to a much larger and more diverse population. This triggered a significant rise in diagnoses, as it was better at picking up on cases of autism at every level.
But PDD-NOS was basically was subthreshold autism. It quickly eclipsed autistic disorder to become the most commonly used PDD diagnosis. Like Asperger’s syndrome, it was an autism diagnosis that didn’t contain the word autism and thus was more readily accepted by parents and health care workers.
By the end of the process, autism had been transformed into something that Kanner would have barely recognized.
Estimates of autism prevalence began to increase worldwide after the publication of the DSM-III and DSM_III_R. This was no surprise to Lorna Wing: awareness of autism among professionals was dramatically increasing at the same time that the boundaries of the condition were expanded realigning themselves with the reality of the spectrum – to 1 in 100 children. In England, between 1990 and 2000, cases increased by an astonishing 22% on average per year and would never level off again.
A similar evolution was taking place in the USA prompted by amendments to the Disabilities Education Act. Clinicians applied the diagnosis more readily and increased awareness among school teachers and staff. Few parents could afford Lovaas’s forty hours of ABA a week to achieve “full recovery”.
Assessment tools. TEACH introduced the Child Autism Rating Scale (CARS) in 1980 which was particularly good at distinguishing autism from other forms of developmental delay, such as intellectual disability. The scale was highly reliable and consistent, and its scores matched well with assessment by other means. New raters could be trained in a single one-hour session. CARS also provided an accurate picture of the child’s strengths, which was crucial for developing an appropriate plan for education. The second edition of CARS was introduced in 1988 that was easier to use and could be used to diagnose teenagers and adults.
An international team introduced the Autism Diagnostic Observation Schedule (ADOS) to assess communication, social interaction, and play, first in children and then extended to teenagers and adults.
The clinical population was changing enormously but the clinical outcome barely changed – 50% of the autistic population are mute and remained that way. Even high IQ autistic adolescents sustained rudimentary social relationships. The outlook looked relentlessly monochrome.
Asperger’s syndrome knowledge was still in its infancy as it shaded into subclinical eccentricity – was it truly a mental disorder or a common personality type? Asperger’s was clearly a disorder of social impairment subject to social context.
The term Aspie would become a badge of honor and defiant pride within a decade. The genie of autistic intelligence was posed to escape the bottle in which it had been trapped for 50 years. The DSM-IV added Asperger’s resulting in more families gaining access to services. The DSM-IV was an international smash that earned $100 million. It was a 900-page behemoth that found its way everywhere. Instead of requiring that a child display impairments in social interaction, communication, and behavior before getting a diagnosis of PDD-NOS, the criteria substituted the word or for and. This typo went uncorrected for 6 years and about 75% of children identified as not having the disorder (true negatives) were incorrectly identified as having it, creating a true autism epidemic and a statistical nightmare.
Leominster, a New England factory town 45 miles NW of Boston had many plastics manufacturers like Foster Grant, the maker of sunglasses. Soon Leominster became the Polluted City with a green haze in the air and the waters of the Nashua River flowed red, white, and blue. PVC particles frosted vegetables. Finally, the plant was outsourced to Mexico and the defunct plant was declared a hazardous waste site. Small clusters of autism started to show up. A similar chain of events had occurred 40 miles up the highway at a working-class town called Woburn when clusters of acute lymphocytic leukemia occurred. Headaches, blurred vision, rashes, and miscarriages were common. Carcinogenic and neurotoxic chemicals had been buried near two of East Woburn’s wells. Dozens of autistic children were found when maps were made of autistic children. The link to the Foster Grant plant seemed undeniable. Citizens went national in a 20/20 episode. 42 cases of autism were found in a small neighborhood of 600 homes. Firm evidence of the role of toxicity in autism was elusive but mothers were convinced. Parents from all over the country contacted the TV network. The actual number of confirmed cases of autism in town was lower than advertised and parents’ proximity to the Foster Grant plant was tenuous at best. The real story was more complicated than portrayed.
The connection of autism and genius implies that children with the syndrome inherit a double dose of the extreme ability to concentrate – to narrow their attention to a very fine point, like a searchlight, to illuminate with great intensity a very small matter.
The fact that some children who displayed all the classic signs of early autism manage to grow up to become happy and well-adjusted adults without the benefit of elaborate elimination diets and gray-market drugs like secretin (a digestive hormone heavily promoted by Rimland that showed no evidence of benefit in placebo-controlled studies) had been forgotten. So had Kanner’s observation that one of the most crucial factors in determining the outcome of his patients was a sympathetic and tolerant reception by their teachers.
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Rimland did not focus on the changes in diagnostic criteria (DSM-III, III-R, and DSM IV) to explain the rapid rise in the incidence of AS, but instead blamed pollution, antibiotics, and vaccines with the Leominster “cluster” as a dramatic example. He pushed the idea that there was an Autism Epidemic, not merely an increase in awareness.
This took hold permanently in the autism parent’s community becoming part of the growing lore of the epidemic. His position as the most trusted authority in the autism parents’ community gave him enormous influence.
He became frustrated as the centre of autism research tilted away from him toward Wing and the London group. Vaccines became his main area of focus. The original DPT (diphtheria, pertussis, tetanus) was based on killed whole bacterial cells, had many adverse effects, quality control issues, unreliable potency, and batches with higher than usual side effects. It was finally replaced in 1971 by an acellular form. Books like DPT: A Shot in the Dark by Harris Coulter and Barbara Fisher and an NBC special: DPT: Vaccine Roulette played down the risks of natural infection and highlighted the risks of the vaccine. They detailed brain-damaged children and depicted pediatric medicine as a horror show of heedless doctors, craven vaccine manufacturers, and sleazy government officials – a scathing critique of the whole apparatus of mainstream medicine. Levels of fear were as bad as the polio scare of the 1950s. The National Vaccine Information Centre (NVIC) became the organizational power of the movement. Coulter, with no credentials, became an advocate of homeopathy and the notion that children with learning disabilities were vaccine-injured, instead of dyslexic or autistic. Rimland came to believe that Coulter had found the elusive puzzle of the rising autism rates. His endorsement gave Coulter’s fringe theories about autism, encephalitis, and vaccines a reach they would never have had.
Andrew Wakefield. At the same time, a young gastroenterologist in England named Andrew Wakefield claimed that the combination measles-mumps-rubella (MMR) vaccine causes brain injury. In 1998, he published his theories in the Lancet, one of Britain’s most prestigious medical journals. Fever, rashes, convulsions, and other transitory reactions to vaccines terrified parents. The very rare reactions that are serious are trade-offs of the socially acceptable risks (most lifesaving drugs or surgery/anesthesia could have potentially fatal results). Homeopathy, while it may never cure, it also never kills directly. A formidably built man with deep-set blue eyes and a crisp, no-nonsense manner, Wakefield carried himself like a man who was above the fray. He used every ounce of this gravitas to cast a pall of doubt over MMR, venturing much further into the realm of conjecture. Reporters kicked into horror mode with frightening headlines in all the British tabloids – the press coverage sent shock waves through the autism parents’ community and far beyond. For Rimland, the Wakefield study was the smoking gun he’d been waiting for. In the coming years, many members of his network would become convinced that autism was the product of multiple insults to a child’s developing brain from vaccines and/or vaccine preservatives like thimerosal (a mercury compound which was quickly phased out of most vaccines despite later studies showing that this had no impact on the rising rates of autism diagnosis). Major media outlets and journalists found the David-and-Goliath angle – a visionary doctor backed by an army of warrior moms going up against a conspiracy between Big Pharma and government officials – irresistible. In November 2000, Wakefield appeared on 60 Minutes to blame the MMR for an epidemic of autism.
Rates of immunization for measles, mumps, and pertussis began to fall worldwide. Vaccines were portrayed as ineffective and disease was embraced (pox parties).
Wakefield’s case series became one of the most influential articles in the history of public health – and then it would become one of the most widely and thoroughly refuted as numerous problems with its methodology, ethics, and reporting were uncovered. Wakefield had also failed to disclose a substantial financial agreement with lawyers planning to mount a class-action suit against vaccine manufacturers. The study was finally retracted by the Lancet in 2004. Wakefield was stripped of his medical license in 2010 and the British Medical Journal denounced his study as an “elaborate fraud” in 2011. A meta-analysis of a dozen epidemiological studies concluded that “The current literature does not suggest an association between ASD and the MMR vaccine. While the risk of autism from MMR remains theoretical, the consequences of not vaccinating are real.”
Lorna Wing regarded the vaccine controversy with a sense of tragic inevitability. There was no question that the changes they wrought in the DSM criteria were the primary factor responsible for rising numbers. By making the diagnosis available to mildly impaired children and adults, they and their families no longer had to struggle along without help as they had in the 1960s. “These people had always existed”. After their development of the concept of Asperger’s syndrome, traits of the syndrome were common. Just as it is difficult to draw lines between Kanner’s and Asperger’s, it is also between Asperger’s and normality. As a dash of autism is essential for success in science and art, perhaps the advent of the internet has accelerated an evolutionary tendency in that direction.
The most insidious effect of Wakefields’s case study and the firestorm of controversy that followed it was hijacking the movement created by parents, diverting it from its original mission of demanding services and accommodations in education into a rancorous debate about vaccines. In the heat of the Autism Wars, virtually every other issue – such as the pressing need for programs to help autistic teenagers prepare for employment – was swept off the table.
Fears of an epidemic have also skewed the direction of autism research. Most studies backed by the NIMH and other federal agencies and private organizations like Autism Speaks are committed to an endless search for potential causes and risk factors, while projects devoted to improving the quality of autistic people’s lives are perpetually underfunded.
But that is starting to change as autistic people are taking control of their own destinies, with the help of parents who no longer believe that what their children need most is a cure.
Temple Grandin. In 1989, she spoke at a conference of autism professionals and educators about “high functioning individuals with autism”. “I am a 44-year-old autistic woman who has a successful international career designing livestock equipment. I completed my Ph.D. in Animal Science at the University of Illinois in Urbana and I am now an Assistant Professor of Animal Science at Colorado State University.” Few people had seen a mature woman who called herself autistic. This conference effectively launched Grandin’s career as a public speaker. Two decades later, the scene was created for the Emmy-winning biopic Temple Grandin, starring Clare Danes.
Recounting the story of her life in her inimitably gruff and blunt-spoken way, Grandin cast more light on the day-to-day reality of autism than decades of clinical observation and speculation had managed to produce. She was unable to speak until age three and struggled with severe behavioral issues through her teens suggesting that labels like high-functioning and low-functioning were too simplistic. She had managed to avoid institutionalization only because the neurologist who initially examined her diagnosed her with brain damage rather than autism.
Grandin characterized descriptions of nonverbal children as willfully oblivious to the people around them is terribly misguided. “if adults spoke directly to me, I could understand everything they said, but I could not get my words out.” My mother and teachers wondered why I screamed. Screaming was the only way I could communicate.”
She pointed out the inadequacy of existing empirical methods for capturing the sensory sensitivities at the core of the autistic experience. There was nothing unusual with her hearing. She described being bombarded with certain sounds as like “having a hearing aid stuck on “super loud”. The reason she misbehaved in church so often as a little girl was the unfamiliar petticoats, skirts, stockings she was forced to wear on Sundays felt scratchy against her skin.
She pointedly referred to her autism as a “handicap” rather than a mental illness, invoking the humanizing language of disability over the stigmatizing lexicon of psychiatry.
She described the ways the visual nature of her thought processes and memory had given her practical advantages in her career. “If someone says the word cat, my images are of individualized cats I have known or read about. I do not think of a generalized cat. My career as a designer of livestock facilities maximizes my talent areas and minimizes my deficits. . . . Visual thinking is an asset for an equipment designer. I am able to ‘see’ how all the parts of a project fit together and see potential problems.
Then she traced the roots of her creative gifts through the branches of her family tree, describing her paternal great-grandfather as a maverick who launched the biggest corporate wheat farm in the world and her maternal grandfather as a shy engineer who helped invent the automatic pilot for airplanes. All three of her siblings think visually and that one of her sisters, a gifted interior designer, is dyslexic.
Her emphasis on the virtues of atypical minds marked a significant departure from the view of most psychologists, who framed the areas of strength in their patients’ cognitive profiles as mere “splinter skills” – islands of conserved ability in seas of general incompetence. Instead, Grandin proposed that people with autism, dyslexia and other cognitive differences could make contributions to society that so-called normal people are incapable of making.
Grandin pays tribute to her mentors, starting with her mother, Eustacia Cutler, who never lost faith in her potential and fought many battles to ensure that Temple got an education. William Carlock was the high school science teacher who channeled her teenage fascination with cows into a career in animal science. The turning point in her life occurred one summer at her Aunt Ann’s ranch, when she noticed that fearful calves calmed down when herded into a device called a squeeze chute that held them securely in place. When it also alleviated her “nerve attacks”, she devised a similar apparatus for herself. It also made her more emotionally connected to the people around her. “For the first time in my life, I felt a purpose for learning.
As one of the first adults to publicly identify as autistic, Grandin helped break down decades of shame and stigma. To most clinicians at the time, the notion of an autistic adult with a doctorate and a successful career seemed implausible at best. In 1986, she wrote her memoir Emergence as the first book written by a recovered autistic individual.
It soon became obvious to her that she had not recovered but had learned, with great effort, to adapt to the social norms of the people around her. “When I said that early stuff, I didn’t realize how different my thinking was. I was doing a lot of construction projects in the early 90s, and I could draw something and test run that piece of equipment in my mind. I could draw the layout for a meat-cutting line and could make the conveyors move.” She began to think of herself as having a powerful digital workstation in her head, capable of running instantaneous searches through a massive library of stored images and generating 3-D videos from the sketches on her drafting table.
She noticed how many parents at autistic conferences were gifted in technical fields. “I started to think of autistic traits as being on a continuum. The more traits you had on both sides, the more you concentrated the genetics. Having a little bit of the traits gave you an advantage, but if you had too much, you ended up with very severe autism.” She warned that efforts to eradicate autism from the gene pool could put humankind’s future at risk by purging the same qualities that had advanced culture, science, and technological innovation for millennia.
Adults with autism and their parents are often angry about autism. Why would nature or God create such horrible conditions? However, it the genes that caused these conditions were eliminated, there might be a terrible price to pay. Persons with bits of these traits are more creative, or possibly even geniuses. If science eliminated these genes, maybe the whole world would be taken over by accountants.
Oliver Sachs visited Grandin at Colorado State University. His own views of autism were swiftly evolving, informed by the insights of Lorna Wing, Uta Frith and the others in the London group. He suspected that in writing Emergence, that Grandin’s co-author, Margaret Scariano, must have ghostwritten it. “The autistic mind, it was supposed at the time, was incapable of self-understanding and understanding others and therefore of introspection and retrospection. How could an autistic person write an autobiography? It seemed a contradiction in terms.” After reading dozens of her papers, he found that Grandin’s distinctive persona – that of an irrepressibly curious observer of society from the outside, an “anthropologist on Mars,” as she put it – was consistent throughout. She was clearly writing in her own voice.
He eventually realized that that autistic people were capable of “getting” humor. Autism must be seen as a whole way of being, a deeply different mode or identity, one that needs to be conscious (and proud) of itself. In an environment designed for their comfort, they don’t feel disabled; they just feel different from their neighbors.
Sachs spent several days with Grandin. Grandin was amused to discover that the eminent neurologist was nearly as eccentric as she was. “He was like a kindly absentminded professor who zoned out a lot.” In his next best-selling book, An Anthropologist on Mars, he wrote an in-depth profile of her that became the centerpiece of the book. After 50 years of describing autistic people as befitting robots or “imbeciles”, Sachs presented Grandin in the full breadth of her humanity – capable of joy, whimsy, tenderness, passion about her work, exuberance, longing, philosophical musing on her legacy, and sly subterfuge. He acknowledged the prevailing theory that autism is “foremost a disorder of affect, of empathy”, but also explored her deep sense of kinship with other disabled people and with animals, whose fates she saw as intertwined in a society that views them both as less than human.
The chances of Grandin’s perspective-taking root among autism professionals, however, were slim. The notion that an autism diagnosis was a fate worse than death proved hard to dispel – “a terminal illness . . . a dead soul in a live body.”
The diagnosis inspired the creation of a whole new set of dehumanizing stereotypes in the media. The first mention of Asperger’s syndrome in the English language, in the Toronto Star in 1989, described “strange” and “clumsy” nerds who read books compulsively without understanding them, were incapable of friendship, and burst into tears and laughter for no reason. The second mention, in the Sydney Morning Herald, led off with the sentence, “It is the plague of those unable to feel.”
Even parent advocacy groups ignored autistic adults. Presentations at conferences dwelled on the usual deficits and impairments, rather than on exploring the atypical gifts that Grandin found so useful in her work.
Jim Sinclair. In addition to being on the spectrum, he was born with the physical characteristics of both genders (hermaphrodite). At a very young age, he began identifying with other disabled people and had the concept that you don’t throw away people for being broken. He was clearly bright and articulate – too bright and articulate for an autism diagnosis. When he became tense or overwhelmed and began flapping his hands or rocking, he learned to suppress those behaviors, which only made him more anxious. When watching his peers interact, he preferred to be off somewhere else, doing his own thing.
What only Sinclair knew was that, until he was twelve, he was speaking primarily in echolalia. “I had to be given the words first, then I could pick which ones I needed in a particular context. I could take words that were in a textbook, or that a teacher had said, and parrot them back, so I got good grades. But what I couldn’t do was put new words together on my own.”
As Sinclair and his peers become teenagers, the increasingly complex rules of the social world seemed incomprehensible to him. When other kids bullied him, which happened often, his mother would say, “Be nice to them and they’ll be friends with you.” But he couldn’t figure out why he was expected to be friends with people who treated him so cruelly.
By the time Sinclair was in graduate school, his efforts to pass as nonautistic began falling apart. Once he was stripped of the reassuringly familiar structures and routines of his life at home, he felt the behaviours he had worked so hard to keep under wraps returning. He was stimming a lot more in public. He both couldn’t suppress the stims and go to school, hold down a part-time job, do his own grocery shopping, laundry, and everything. He finally shut down and was unable to respond, lost his job at the university, and became homeless for a time.
Trying to make sense of why his life was imploding, he read an information packet on autism, but the description didn’t seem to apply to him. “I didn’t consider myself to be someone who didn’t have empathy, lacked the ability to form emotional bonds, and wasn’t interested in relating to others.” After watching Joseph Sullivan’s Portrait of an Autistic Young Man, he had a profound sense of recognition. For the first time in his life, he could understand the body language of someone. He could see what experts could not – that Joseph was trying to communicate through his behavior. He didn’t seem oblivious but that he was listening and asking for clarification because he didn’t understand the terms.
In order to seek out other autistic adults, Sinclair subscribed to a quarterly publication called MAAP (more able autistic people), started in 1984 by a woman with a child they suspected had autism but because she was able to speak, had ruled it out. Through MAAP, Sinclair connected with several like-minded people and spoke at a conference: “Being autistic does not mean being inhuman. But it means that what is normal for other people is not normal for me, and what is normal for me is not normal for other people.” He compared himself to “an extraterrestrial stranded without an orientation manual.” He felt like a “self-narrating zoo exhibit.”
Donna Williams. A MAAP member, she wrote an autobiography called Nobody Nowhere about observing human interactions from a distance, straining to make meaning out of a confusing barrage of jumbled sensory impressions. She met Sinclair in a social situation, a new experience outside conferences. They forgot to eat, do chores and shared playful common terms they’d developed to map their subjective experiences, finding a surprising amount of overlap, including stimming together. Some behaviors that had been viewed for so long as inherently antisocial could become social in a group of autistic adults. Together, they felt like a lost tribe. They all had a sense of belonging, of being understood – autistic space.
Sinclair was one of the first openly autistic adults online by joining a digital mailing list out of St John’s University in New York founded by Ray Kopp. One of the most frequently asked questions was whether Kanner’s syndrome could persist into adulthood.
Sinclair also launched the first autistic-run organization, Autistic Network International (ANI) to stand up for the 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. 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.
Their subculture gave rise to its own group slang. Neurotypical is a label for nonautistic people were used for the first time in their newsletter – 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 – “Neurotypical syndrome is a neurobiological disorder characterized by a preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure”. They referred to themselves as “autistic”, not people with autism – a term suggesting that autism is bad – so bad that it isn’t even consistent with being a person and separating it from the person.
The emergence of e-mail, electronic bulletin boards, internet chat, America Online, and ultimately the World Wide Web provided a natural home for the growing community of autistics where they could interact at their own pace in a language that often felt more native to them than the spoken word. Autistic people had an affinity for computers as 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. They felt accepted for the quality of their thoughts rather than the quality of their speech.
The ANI posse began appearing at conferences and set up booths that were 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 reminder that their existence was a tragic puzzle.
Sinclair delivered a manifesto at the first international conference on autism in 1993 that would change the course of history. He aimed to dispel several long-standing myths, starting with Lovaas’s notion that there was a normal child trapped within an “autistic shell,” waiting to be rescued. He described autism as “a way of being . . . that colors every experience, sensation, perception, thought, emotion and encounter, every aspect of existence.
He acknowledged that some amount of grief was natural but stressed the importance of parents separating their expectations of an idealized child from the child in front of them who desperately needs their love and support. If grief goes on for too long, it transmits a dangerous message to the child: that they are inadequate as they are.
Autism presents a particularly difficult challenge for parents because the child inhabits a different world of subjective experience from the one that they take for granted. Much of the suffering associated with autism is the result of they are habitually denied the services they need. He encouraged parents to use their collective power to change it. “Grieve if you must, for your own lost dreams, but don’t mourn for us. We are alive. We are real. And we’re here waiting for you.” ANI members were more compassionate, more accurate, and more understanding.
There was a wave of backlash from parents in the St. John’s list about autistics perseverating about the conference. They felt betrayed and launched their own online list, ANI-I in 1994. They developed a set of principles and policies: “We are here to affirm that autistic lives are meaningful and worthwhile. Discussions about ways to make autistic people ‘less autistic’, to ‘cure’ autism, to render autistic people indistinguishable from non-autistic people, or to prevent the births of future autistic people are not appropriate for this list.” ANI-I acted as an incubator for autistic culture, accelerating its evolution.
At conferences, they provided name-tag holders with two sides: red signified “Nobody should try to interact with me,” and yellow “Only people I already know should interact with me, not strangers. Green was added later: “I want to interact but am having trouble initiating, so please initiate an interaction with me.” These turned out to be so useful that they have been widely adopted at autistic-run conferences all over the world.
It was time for autistics to hold a conference of their own. At Camp Bristol Hills in upstate New York, in July 1996, the camp offered an environment free of the sensory assaults unavoidable at most urban conference centres. The theme was “Celebrating Autistic Culture” and was attended by sixty people representing the complete diversity of the spectrum. The overriding principle was “opportunity but not pressure.” Autreat became an annual event and provided a template for similar conferences in other countries. The most commonly reported experience was that the participants didn’t feel disabled, though their neurology had not changed.
A new idea emerged: that people with Asperger’s have always been part of the human community, standing apart, quietly making the world that mocks and shuns them, a better place. That idea was given a name – neurodiversity. People with physical and cognitive differences were systemically disabled, excluded, and demonized by society. Handicapping the limitations of disability depends either on how well the environment is adapted to the range of people who use it or on the opportunities they have had to learn to cope with it, or both. Being autistic does not mean being devoid of empathy, and that the spectrum spans a broad range of intellectual abilities.
NT is only one kind of brain wiring, and, when it comes to hi-tech, quite possibly an inferior one. Neurodiversity can be every bit as crucial for the human race as diversity is for life itself. Who can say what form of wiring will prove best at any given moment? It is not that more autistics were becoming visible in the world, but the world itself was becoming more autistic – and this was a good thing. The revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabled by the limitations of space and time. Autism had come a long way since the days of Kanner that he had seen only 150 true cases. It was Asperger’s world now.
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 himself and felt like a loser, but decided to prove everyone wrong.
Unable to find any hangouts on the Internet (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. Their goal was to alleviate those with Asperger’s form 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 generating a healthy income stream. When linked to BitTorrent, new members poured in by the thousands. 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 NYUs 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. 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 that 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 that had to do with policy and politics and started attending autism conferences and then 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 color to fit in would not be used to exclude them from a diagnosis – its full breath 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, that offered a broad range of autistic perspectives on such issues a being labeled “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 cruelest 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 don’t depend on hopes for a recovery. It made available something to 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 multiracial, multispecies crew of the Enterprise. There was no left out in the Star Trek universe, no one was ostracized, no one was too weird. In fact, the weirder you were, the cooler you were, because you had more to bring to the table. That was a lifesaving message for a kid who got 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.
DESIGNS FOR A NEURODIVERSE WORLD
What is autism? Eight decades after Asperger saw his first patients seeking to explain their behavior, many aspects of this question are still open. But 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 behavior and needs that manifest in different ways at various stages of an individuals 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.
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 predispostion 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 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 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 uses 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 movement proves. But first we have to learn to think more intelligently about people who think differently.
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One way to understand neurodiverstiy is to think in terms of human operating systems instead of diagnostic labels like dyslexia or ADHD. The brain is, above all, a marvelously 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 unprectable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.
The mani 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 senory-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.
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 onstage 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 all over the country. This is not only a humane idea, it’s smart marketing too, because the families of 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.
The advent of digital technology has opened new horizons in education for adapting teaching materials to suit learners with a diverse range of 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 leader in this area has been the National Centre on Universal Design fro Learning which 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 individual learning style first comes to light, because a child’s experiences in school can set him or her up for success r failure in later life. To often, the individual 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 inverntors of all ages are encouraged to show off their latest projects – has been a boon to young people on the spectrum.
Neurodiverstiy is also being embraced in the workplace of 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 an alliance with 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 Speciaisterne lets them cut loose with a table full of Lego Mindstrom 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.
Neurodiverstiy activists have also pushed for more autistic representation in policy making, 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 autittic people and their families most.
“Nothing about us, without us” also extends to the process of doing science itself. Many autistics are suited for academic science. They contribute to science because of their autism, not in spite of it.
A group called the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) is collaborating with self-advocates and rein 20214, released a comprehensive toolkit designed to inform patients and providers of the unique needs of atuistic people in the health care system. ASAN’s leadership training program has demonstrated the prtnetial of peer mentoring for young people on the Spectrum.
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 nad 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.
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For decades, estimates of prevalence had remained stable at just four or five per ten thousand. But that number started to snowball in the 1980s and 90s, raising the frightening possibility that a generation of children was in the grips of an epidemic of unknown origin. Books like Clara Claiborne Park’s The Siege, Oliver Sack’s An Anthropologist on Mars and Temple Grandin’s Thinking in Pictures offered a view of the diverse world of autism from a unique vantage point.
The Siege: Psychiatrists falsely blamed “refrigerator mothers” for causing their children’s autism by providing them with inadequate nurturing.
An Anthropologist from Mars: He described their challenges faced in day-to-day life while bringing strengths of their atypical minds to their work. “No two people with autism are the same – the precise form or expression is different in every case. There may be a most intricate (and potentially creative) interaction between the autistic traits and other qualities of the individual. While a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.”
Sacks made the distinctive traits of autism recognizable to his colleagues in his sensitive portrayals of artist Stephen Wiltshire, the “calculating twins” George and Charles Finn and industrial designer Temple Grandin. The Man who Mistook His Wife for a Hat. He was an advisor to Dustin Hoffman for Rain Man.
Thinking in Pictures was a biography from the inside. Grandin didn’t learn to speak until she was four, was clinically diagnosed with brain damage – a common occurrence in the days when autism was widely unknown. Encouraged by her mother and a supportive high school science teacher, she developed her instinctive kinship with animals into a practical set of skills that enabled her to succeed in the demanding job of designing facilities for the livestock industry. She came to regard her autism as both a disability and a gift, as different, not less.
Lorna Wing. A British psychologist was the architect of the spectrum model. She was the mother of an autistic child. She overturned Kanner’s conception of autism as rare, inevitably devastating and homogeneous making it possible for tens of thousands of children, teenagers and adults to gain access to the educational placements and social services they deserved, for the first time in history.
One unanticipated consequence was the emergence of gifted autistic adults like Temple Grandin into public life. As they articulated their experiences of growing up, they found commonalities that challenged even many of Wing’s long-held assumptions about autism such as the notion that people like her daughter lack empathy. Instead of seeing themselves as psychotic or intrinsically disordered, they came to take pride in their eccentricities, learning to see their minds as “different, not less” as Grandin put it.
Another unintended effect of the adoption of the spectrum model, however, was the reaction of concerned parents to a steep rise in estimates of autism prevalence all over the world. Few children diagnosed under Wing’s new criteria seemed destined to become reclusive Nobel laureates, socially awkward Hollywood stars, or the next Bill Gates. Many struggled to acquire simple spoken language and rudimentary self-care skills seemed out of reach for many kids, particularly in the difficult years of their lives.
One of the hardest things about having a child with autism, was struggling to maintain hope in the face of dire predictions from doctors, school administrators and other professionals who were supposed to be on their side. Things had not changed much since the early days when parents were told to put their children in institutions and move on with their lives.
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 “engineers 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 own autistic traits only in the wake of their child’s diagnosis. Marriages work out best when two people autism marry as they are attracted because their intellects work on a similar wavelength. 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 struggling 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 knew how to correct it. They find most people annoying and illogical. It is important that the general public and the hiring companies 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. They can hold hundreds of lines of code in their head as a visual image. They look for the flaws in the pattern, and that is where the bugs are.
The ultimate hack for a team of Silicon Valley programmers may turn out to be cracking the genetic code that makes them so good at what they do.
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 specter 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 normally 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. Rumors 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 qualified terms used. To a worried mother searching her son 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 that was allegedly rooted in genetics suddenly seem to be everywhere at once? Was autism a congenital and incurable developmental disorder rooting 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” but they were better informed with 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.
Research long neglected by funding agencies 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 the 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 found triggers for autism that grew daily so as to prompt some write “Being alive linked to autism”. Bu 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. 100 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 are 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 were however 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 research on autism, why do we seem to know so little about it?
The concept of neurodiversity – the notion 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 turn out to be very old 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 to YouTube called “In My Language” that 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 makes it clear 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 own terms “My language is not about designing words or even visual symbols for people to interpret, but it is about being ina constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. Far from being purposeless, the way that I move is an ongoing response to what is around me”. Using a text-to-speech program, 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 simply relax, enjoy being themselves and make connections with one another can teach more about the day-to-day realities of being autistic than reading a hundred case histories. The challenges faced by autistic people face in a society not built for them, while disabling 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.
Asperger’s syndrome was first described in America in the 1994 edition of the Diagnostic and Statistical Manual of Mental Disorders.
Relentlessly curious, do things with single minded intensity, not self-absorbed, passion for precision. Excessively shy
Few nobel laureates or either gender have resembled suave and well-rounded human beings equally accomplished in the lab and the art of scintillating conversation. Instead they tended to be persnickety oddballs in ill-tailored coats or sensible dresses, ruled of by slide rules and unwavering commitments to accuracy.
Come across as cold, rude, disinterested or uncaring – though that was not the intention.
Didn’t need a lab, only a pencil
TEMPLE GRANDIN
Autism is a handicap not a mental illness – invokes the humanizing language of disability over the stigmatizing lexicon of psychiatry.
Visual nature of her thought processes and memory had given her practical advantages in her career. Her career (as a designer of livestock facilities maximizes my talent areas and minimizes my deficits. Visual thinking is an asset for an equipment designer. I am able to see how all the parts of a project fit together and see potential problems
trace the creative gifts through the branches of her family tree
The virtues of atypical minds – autism, dyslexia and other cognitive differences could make contributions to society that so-called normal people are incapable of making.
She used a simple apparatus made of scrap wood to make a squeeze machine that put pressure on her and relieve her anxiety and feel more emotionally connected to people. For the first time, she felt a purpose for learning
She had learned to adapt to the social norms of the people around her.
She didn’t realize how different her thinking was. She had a powerful digital workstation in her head
many parents at autism conferences were gifted in technical fields.
Think of autism traits on a continuum – the more traits you had on both sides, the more concentrated the genetics. Having a little bit of the traits gave you an advnatage, but if you had too much, you ended up with very severe autism
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Neurodiversity – dyslexia, dyscalculia, ADHD, autism
NT is only one kind of brain wiring, and when it comes to working with high tech, quite possibly an inferior one. Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment. The world was becoming more autistic and this was a good thing – the revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabledd by the limitations of space and time.
Social status as a dork was the inevitable side effect of being highly gifted.
Think different – Einstein, Jim Henson, Miles Davis. L
Goal is to alleviate those with Aspergers from the pressure that they need to confirm. Best to learn how to use your uniqueness to your advantage and find your place in the world.
The Bridge – a TV series with a detective with Aspergers.
The Good Doctor
Bram Cohen the autistic creator of Bit Torrent – a peer-to-peer file-sharing protocol estimated to account for a third of all internet traffic
Wrong Planet – announce their diagnoses as cause for celebration rather than occasions for mourning – could an aggregation of loners become a movement?
Slashdot preeminent news aggregator
Difficulties were not symptoms of his autism but problems built into the ways that society treats people who don’t meet the standard expectation of normal.
ASAN
Autism makes some things incredibly challenging it also brings incredible gifts.
Role models of happy, creative and socially engaged autistic people
Revel in your autistic eccentricities
Classic autistic strength – pattern recognition
Star Trek – metaphor for an inclusive society in the multiracial, mulitspecies crew of the Enterprise. There was no one left out in the Star Trek universe, no one was ostrasized, no one was too wierd. In fact the wierder you were the cooler you were because you had more to bring to the table. Lifesaving message for a kid who got bullied for being different
access to technology that enable you to turn into a gift – see things that other people can’t see.
Not broken just neurologically outnumbered
Employees can be used to keep companies up to date research from all over the world – by reading everything and forgetting nothing, vetting experimental designs for errors and subtle forms of bias and advocate for higher scientific standards. Many autistics are suited for academic science.
By building a world suited to the needs and special abilities of all kinds of minds, the returns for autistic people are practical and immediate. These innovations are not often expensive. With the generation of autistics diagnosed in the 1990’s society cannot pretend that autism suddenly loomed up out of nowhere.
Work with strengths rather than deficits. Once figuring out talents, everything else comes along as it feels good to do something you’re good at doing. If a biomedical engineer promises a cure, run in the opposite direction. Teach people to be be effective self advocates in school and the work place. Communities need to celebrate themselves for who they are, the most precious and elusive thing that anyone can hope for.
Being labelled low functioning and framing autistics as a tragedy and a burden to society has been one of the cruelest tricks our culture plays on autistics by making us strangers to ourselves.
Disregard for authority
had the potential to become innovators in their field of interest precisely because they were constitutionally unable to take things on faith.
Ability to see things and events around them from a new point of view which often shows surprising maturity. This ability can in favourable cases lead to exceptional achievements which others may never attain. Abstraction ability is a prerequisite for scientific endeavor.
a distinctive cluster of aptitudes, skills, attitudes and abilities autistic intelligence.
For success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to rethink a subject with originality so as to create in new untrodden ways.
Find individualized approaches to education that would enable these children to make the most of their innate gifts while ensuring that they had the resources to cope with the challenges of their disabilities. What is the best teaching method for them? Teach these children how to put their autistic intelligence to work. Asperger began calling them “little professors”.
Trying to leverage peer pressure in the classroom didn’t work , because they were already alienated from their peers. Flattery was equally ineffective, as they were curiously immune to it. What they did care passionately about was logic. They had an innate desire – almost a compulsion – to seek out universal laws and objective principles.
the primary motivation for learning in typical children was their emotional identification with the teacher. But autistic children sought learning for its own sake in the course of pursuing their passionate interests. They didn’t care how their teachers thought about them; they just wanted to know the facts. The best teachers for these children were willing to meet the children half way, instead of insisting that they act like everybody else. The guidance of these children requires a high degree of effort and concentration. In short, the teacher has to become somehow autistic.
Asperger had been a gifted, eccentric, solitary child himself. Born in 1906, his two brothers died young and he became an only child. Asperger’s mother doted on her surviving son. His father, by contrast, was a stern disciplinarian. Asperger attriibuted his own desire to excel in his studies to his father’s frustration as having been too poor to go to university. A person finds what he needs, or, to put it another way, it finds him.
An unusual number of Asperger’s patients were highly accomplished. Many of their ancestors had generations of intellectuals. If a manual laborer was found among the relatives of these patients, it was likely someone who had “missed his vocation”, forced into a manual job because of economic conditions.
But their inherited gifts often also came at a cost. Parents may have been unfashionable, highly anxious, strange and loners with limited intuitive social understandings. However, these shared quirks of personality may give them an emotional basis for relating to their children. Parents understand their children’s difficulties well as the find similar traits in themselves.
