Altered attitudes can open worlds - The Jewish Chronicle

A few years ago, after someone mentioned to me about the supposed rise of autism in Silicon Valley, I started reading every news story about autism I could find and downloading journal articles by the score. It soon became clear that the mysterious rise in diagnoses was not restricted to California, where I live. The same thing was happening all over the world.

To put the rising numbers in context, I familiarised myself with the basic time-line of autism history, learning the story of how this baffling condition was first discovered in 1943 by a child psychiatrist named Leo Kanner, who noticed that 11 of his young patients seemed to inhabit private worlds, ignoring the people around them. They could amuse themselves for hours with little rituals like spinning pot lids on the floor, but they were panicked by the smallest changes in their environments, such as a chair or favourite toy being moved from its usual place without their knowledge. Some of these children were unable to speak, while others only repeated things they heard said around them or spoke of themselves detachedly in the third person.

Claiming that their condition differed "markedly and uniquely" from anything previously reported in the clinical literature, Kanner named their condition autism - from autos the Greek word for self - because they seemed happiest in isolation.

A year later, in an apparent synchronicity, a Viennese clinician named Hans Asperger discovered four young patients of his own who seemed strangely out of touch with other people, including their parents. Unlike Kanner's young patients in Baltimore, these children spoke in elaborate flowery sentences while displaying precocious abilities in science and mathematics. Asperger affectionately dubbed them his "little professors".

He also called their condition autism, though it's still a matter of dispute if what he saw in his clinic was the same syndrome that Kanner described. For decades, estimates of the prevalence of autism remained stable at just four or five children in 10,000. But that number started to snowball in the 1980s and 1990s, raising the frightening possibility that a generation of children was in the grips of an epidemic of unknown origin. My research was facilitated by the fact that our apartment in San Francisco is located just down the hill from the University of California, which boasts one of the best medical libraries in the country. I became a regular browser in the stacks, poring through articles on epidemiology, paediatrics, psychology, genetics, toxicology, and other relevant subjects.

After 70 years of research, why do we still know so little?

Meanwhile, my shelves at home filled up with books like Clara Claiborne Park's The Siege, Oliver Sacks's An Anthropologist on Mars, and Temple Grandin's Thinking in Pictures. Each offered a view of the diverse world of autism from a unique vantage point.

Then my real reporting began. I interviewed an 11-year-old boy named Nick, who told me that he was building an imaginary universe on his computer. Chubby, rosy-cheeked, and precociously articulate, he informed me that he had already mapped out his first planet: an anvil-shaped world called Denthaim that was home to gnomes, gods, and a three-gendered race called the kiman. As he told me about the civilisation he was creating on his desktop, he gazed up at the ceiling, humming fragments of a melody over and over. The music of his speech was pitched high, alternately poetic and pedantic, as if the soul of an Oxford don had been awkwardly reincarnated in the body of a boy.

"I'm thinking of making magic a form of quantum physics but I haven't decided yet, actually," he said. I liked him immediately.

But Nick's mother broke down in tears as she told me that he didn't have a single friend his own age. She recalled one terrible day when his classmates bribed him to wear a ridiculous outfit to school.

Because autistic people struggle to make sense of social signals in real time, Nick didn't realise that his schoolmates were setting him up for humiliation. I wondered what would become of this bright, imaginative, trusting boy as he got older and his peers became obsessed with social status and dating.

Other parents shared the ingenious strategies they developed to help their children learn to cope with a world full of unavoidable changes and surprises. A family event like a first trip on an aircraft required months of careful planning and preparation. Marnin told me about the steps that he and his wife, Margo, an intern in the Bay Area, took to help their daughter Leah feel comfortable on her first visit to a new dentist. "We took pictures of the dentist's office and the staff, and drove her past the office several times," he said. "Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have my daughter sit in the chair. The second session was so she could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so she could see exactly what was being done, and to ensure that there were no surprises."

Like many parents, Marnin and Margo had become amateur autism researchers themselves, devoting hours of their precious alone time each week to poring over the latest studies and evaluating therapies that might be of help to Leah. I learned that it was not unusual for parents, whose finances were already strained by the cost of behavioural interventions, to have to walk away from careers they loved to effectively become case managers for their children, fielding teams of behavioural therapists while going into battle with school-boards, regional centres, and insurance companies to ensure that their children got the education and services they deserved.

One of the hardest things about having a child with autism, parents told me, 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. When Leah was diagnosed, an autism specialist told Marnin: "There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future." (At 25, Leah is a bright, engaging, and affectionate young woman who remembers the names of every teacher and fellow student in her classes - going all the way back to pre-school - and sings along with her favourite songs in perfect pitch.) It is so important the general public and the hiring companies understand this group of people. Many will fall through the cracks due to their "odd" behaviours. Many have so much to contribute if given the chance.

As the mainstream world had a long argument about vaccines, newly diagnosed adults were engaged in a very different conversation about the difficulties of 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 people with cognitive disabilities as it does for people with physical disabilities such as blindness and deafness.

A seemingly simple question began to formulate in my mind: After 70 years of research on autism, why do we still seem to know so little about it? To find the answer, I decided to start my research at the very beginning, even before Kanner's and Asperger's allegedly independent discoveries of autism in the 1940s. By taking nothing for granted, I learned that the standard time-line of autism history - its creation myth, so to speak - is fundamentally flawed in ways that render autistic people in previous generations harder to see.

Until these inaccuracies in the time-line are corrected, they will continue to hamper our ability to make wise choices about the kinds of research and societal accommodations that would be most beneficial to autistic people and their families.

One of the most promising developments has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/ hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere check-lists of deficits and dysfunctions. Though the spectrum model of autism and the concept of neurodiversity are widely believed to be products of our postmodern world, they turn out to be very old ideas, proposed by Hans Asperger in his first public lecture on autism in 1938.

The idea of neurodiversity has inspired the creation of a rapidly growing civil-rights movement based on the simple idea that the most astute interpreters of autistic behaviour are autistic people themselves rather than their parents or doctors. In 2007, a woman named Amanda (now Amelia) Baggs posted an extraordinary video to YouTube called "In My Language" that has already been viewed more than a million times after being picked up by major media outlets. 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 clear that she is not sharing these intimate glimpses of her life as a plea for pity.

Her intention 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," she explains. "It is about being in a 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." Her words are articulated by a text-to-speech programme, as if a machine itself is speaking, yet few clips on YouTube offer a glimpse into a mind so profoundly humane.

Another impetus for writing my book was attending Autreat, an annual retreat organised by autistic people for autistic people, in a social environment carefully constructed to eliminate sources of sensory overload and anxiety while maximising opportunities for people on the spectrum to simply relax, enjoy being themselves, and make connections with one another.

My conversations at Autreat - some mediated by keyboards or other devices for augmenting communication - taught me more about the realities of being autistic than did reading case histories. They also offered me the chance to be in the neurological minority for the first time in my life, which illuminated challenges that autistic people face in a society not built for them, while disabusing me of pernicious stereotypes such as the idea that autistic people lack humour and creative imagination. After just four days in autismland, the mainstream world seemed like a constant sensory assault.

The notion that the cure for the most disabling aspects of autism will never be found in a pill, but in supportive communities, is one that parents have been coming to on their own for generations. In her last book, Exiting Nirvana, Clara Claiborne Park described how her neighbours helped her daughter build a life of happiness and fulfilment in Williamstown, Massachusetts, where Jessy still lives, years after her mother's death. At 55, she continues to work in the mail-room at Williams College while painting luminous, meticulously precise images of the world as she sees it, as she has done since her high-school art teacher encouraged her to take up a brush 40 years ago.

"That society has opened up a place for Jessy is what, more than anything else, has made it possible for her to live in, and even contribute to, the community she was born in," Park wrote in 2001. "I can write these words with a faith in a future I'll never see."