By Alec Ash
February 17, 2016
The winner of the Samuel Johnson prize for non-fiction for his book NeuroTribes, chooses his top five new books on autism.
This is completely against the current trend in medicine to see patients as data banks to be mined and debugged with the appropriate pharmaceuticals. What we call personalised medicine is becoming a conversation between algorithms.
“We already understand the value of biodiversity in a rainforest. The same is true of any community of human minds.”
When was the last time you had a relaxed chat with your primary care doctor, instead of a brief, tense recitation of “worrisome signs” after half an hour in the waiting room? Oliver visited his patients at home, to listen to them play piano (or play piano for them), to watch them navigate the courses of their day-to-day lives, observing them in the environments in which they felt most comfortable. This was not just to pick up on novelistic details that he could use in his books – it also gave him a better idea of what his patients were learning to cope with.
To understand autism, Oliver didn’t just tell Temple Grandin to climb into a brain scanner. He went hiking with her in the mountains, visited the livestock facilities where she worked, and had dinner with her at her favourite steakhouse. The essay he wrote out of these experiences, which became the centerpiece of An Anthropologist on Mars, was the fullest, most nuanced portrait of an autistic adult ever drawn to that point in history.
Oliver was interested not just in studying what deficits and impairments his patients had, but also in what gave them joy, resilience and a sense of purpose. He would then ally himself with these sources of strength so they could learn to use their potentially devastating conditions as opportunities for adaptation, renewal, reinvention and growth.
Your own book carries forward Sacks’ legacy in bringing out the human stories behind human brains, in all their complexity. Why did you choose the autism spectrum and history of its discovery for your topic?
Most magazine articles are like snowflakes – they melt away and are quickly forgotten. But I got emails about it for ten years, almost every week. These letters were mostly from autistic people and their families who were dealing with very serious day-to-day problems, such as poverty, lack of health care, inability to find classroom placements, kids “aging out” of services, unemployment, endless waiting lists for diagnosis, the high cost of interventions, lack of programs to help teenagers transition from school to the workplace, widespread stigma and discrimination.
“Now, when a reporter calls to ask me for a comment about autism, I often advise them to talk to autistic adults for the story.”
Meanwhile, the whole world was having a very different conversation — about vaccines. The question of whether vaccines were responsible for the dramatic spike in estimates of autism prevalence that began in the 1990s swept virtually every other question about autism off the table for more than a decade. This wasn’t just a matter of a well-organised group of very angry parents monopolising comment threads on the Internet.
Fears of an “autism epidemic” – a phrase used over and over again by fundraising groups like Autism Speaks – dominated congressional hearings and helped set the federal research agenda. It was like a full-employment program for autism geneticists, while autistic people and their families were left to twist in the wind.
At the same time, the press coverage routinely referred to the spiking numbers as a “mystery,” a “puzzle,” and a “baffling enigma.” No wonder a million theories to explain the sudden increase cropped up of varying levels of credibility, from vaccines to Wi-Fi to video games to increasing paternal age.
I finally decided that someone was going to have to do the work of figuring out what really happened and making it comprehensible to general readers who hadn’t been following niche journals. I didn’t think it would take me five years to do it, but midway through I realised I had to keep going, just to save anyone else the ordeal of getting even that far. The world was desperately hungry for this information.
The central thread of the book is the simultaneous work of Hans Asperger and Leo Kanner in giving very different first definitions of autism, within very different contexts. For readers curious to get a taste, can you give us a potted version of who Asperger and Kanner were, and how and why their approaches differed?
I’ll try to give you a very condensed version, though important layers of nuance will inevitably be lost. Asperger believed that autism is a condition that requires life-long support from parents and teachers, and that autism and autistic traits are common and always have been. He also recognised that autism can convey some special cognitive gifts even in the presence of profound disability. He noted the prevalence of autistic traits among prominent scientists and believed that those traits helped them do their work.
He observed: “It seems that for success in science and art, a dash of autism is essential. 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.”
“One of the most insidious things about the anti-vaccine panic was that it rendered autistic adults even more invisible.”
Kanner took a much narrower and darker view of the condition he claimed to discover. He framed autism as a rare form of childhood psychosis – likely a precursor to adult schizophrenia – triggered by emotionally cold, hyper-ambitious “refrigerator” parents. This led him to see the shadow of family psychopathology even in the special talents and abilities that Asperger had praised.
For example, when one of Kanner’s young patients was able to correctly identify eighteen symphonies after hearing only a few bars before he turned two, Kanner theorised that he was desperately trying to please his parents, because what child could actually care about classical music at that age?
The differences between Asperger’s and Kanner’s views became very fateful, because Kanner’s view prevailed for at least four decades, largely because Kanner became world-famous as the discoverer of autism, though Asperger actually discovered it first, and Kanner studiously avoided mentioning Asperger’s work, which remained untranslated into English until 1991.
During that time the recommended course of treatment for autism became institutionalisation, which was a nightmare for autistic people, while their parents bore the burden of allegedly having caused their kids’ disability by not loving them enough. It was horrifying for everyone involved, except for clinicians touting their latest theories of autism causation.
Bruno Bettelheim became America’s first celebrity “shrink” by comparing the mothers of autistic children to the kommandantsof concentration camps who secretly wished their children dead.
Can you explain the word “neurodiversity” in the subtitle for us, and how it’s a good thing?
Short version: “Great minds don’t always think alike.” We already understand the value of biodiversity in a rainforest. The presence of a wide variety of life forms – each with its own distinctive strengths and attributes – increases the robustness and resilience of any living community as a whole, and its ability to adapt to novel conditions.
The same is true of any community of human minds, including workplaces, corporations, classrooms and society as a whole. To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.
As I explain in my book, the word “neurodiversity” was coined in the 1990s by an Australian sociology grad student named Judy Singer after reading a book about the social model of disability, which proposes that disability is a product of the way society is organised, rather than by limitations imposed by a person’s condition. In a world without wheelchair ramps and accessible buildings, wheelchair users have very few choices about where they can go.
But in a world that accommodates wheelchair users, they have many more choices. Neurodiversity extends the social model of disability into the realm of cognitive differences like autism, dyslexia, and ADHD. How can we make the world safer and more welcoming to people with these conditions so they can lead happier, healthier, and more autonomous lives? That’s the question that the neurodiversity movement asks.
Into your book recommendations: the first is Cynthia Kim’s Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life.
“Once it became clear that I was on the autism spectrum, my first reaction was relief,” she writes. “It explained so much that I thought was my fault – for not trying hard enough or being good enough.”
Then, Kim offers a multitude of practical tips for managing stress and sensory sensitivities, making sense of confusing social interactions, listening to your body’s subtle signals, coping with aging and navigating a world built for neurotypicals.
Is “neurotypicals” your term or hers, or Judy Singer’s? Is there such a thing as a “typical” brain?
The term “neurotypical” started out as a pointed parody that ended up being so useful that it has passed into general usage. I’ve even seen it in research papers. In 1998, an autistic woman named Laura Tisoncik launched an official-looking website credited to the Institute for the Study of the Neurologically Typical.
The pitch-perfect FAQ explained, “Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure.”
The term subversively turned the medical lens back on non-autistic people, making the point that what is considered psychologically pathological is, at least in part, socially constructed. According to the Diagnostic and Statistical Manual of Mental Disorders, I suffered from a serious form of deviancy myself in high school: homosexuality. My parents even sent me to a therapist for the cure. Luckily, it didn’t take. Now I’m a happily married man who is no longer defined as deviant by the so-called bible of psychiatry.
Tell us about your next choice, The Real Experts.
Why is this important? For a long time, parents were told by clinicians that having an autistic child was a fate worse than death. They allegedly had no chance of ever living independently, of developing new skills, of making meaningful contributions to society, of forging intimate relationships, and, perhaps most devastatingly of all, of feeling love for their own parents.
Many of these dire predictions were based on the behavior of autistic people in institutions, because that was the default “treatment” recommended by alleged experts through the 1980s.
The Real Experts is a much-needed antidote to the poisonous misconceptions that have caused autistic people and their families untold grief for decades, and offers parents of young people on the spectrum something they never had in the past: role models of successful, empowered, radical autistic lives.
Your third selection, Uniquely Human: A Different Way of Seeing Autism by Barry Prizant and Tom Fields-Meyer, came out a couple of weeks after NeuroTribes and offers some different perspectives.
One of its primary messages is that there’s no such thing as “autistic behavior”, there’s just human behavior. If a child is having a meltdown, it’s not particularly helpful to regard their distress as just another manifestation of pathology. Instead, Prizant and Fields-Meyer suggest asking whya child is behaving in a certain way, which can often reveal a source of discomfort that can be ameliorated, such as a scratchy garment or a buzzing fluorescent light.
It seems like a simple insight, but after decades of expensive, time-consuming and occasionally brutal interventions focused on training autistic children to suppress “odd” behavior that helps them regulate their emotions and anxiety, it’s a revolution. The authors also provide helpful strategies for enabling autistic children to build on their natural strengths, instead of dwelling on what they can’t do.
Next is a book that will be published in April (available for pre-order now), Autism Adulthood: Strategies and Insights for a Fulfilling Life. Why is this one on your list?
In her frank and deeply touching new book Autism Adulthood, Susan Senator shares the intimate details of her journey with her son, Nat, as he takes his first steps toward maturity in a society that offers few resources for people on the spectrum after they “age out” of the meager level of services provided to school-age children.
She faces the big issues – housing, employment, relationships with siblings, finding trustworthy caregivers – head-on, and offers practical strategies for giving young autistic people the best chance to lead happy, safe, and secure lives, mapping a pathway to the future that offers autistic people and their families real hope, rather than false hopes built on misguided promises of a cure.
By doing so she offers a blueprint for a world in which people at every point on the spectrum are treated as fellow citizens who deserve respect and the ability to make choices, rather than as puzzles to be solved by the next medical breakthrough.
Finally we have a novel, The Eagle Tree by Ned Hayes, also out in the spring.
But The Eagle Tree, a gorgeously written novel, features one of the most accurate, finely drawn and memorable autistic protagonists I’ve come across in literature: a boy named March whose passion is finding out everything he can about trees and then climbing them.
Instead of portraying March in the usual clueless-Aspie way – as “obsessed” with trees and “perseverating” on them to the exasperation of everyone around him – the hero of the book is like a 14-year-old Walt Whitman with autism, seeking communion with the ancient magnificent beings that tower over the landscape around Olympia, Washington.
Even when March is missing the import of the chatter of the adults who exert control over his life, Hayes plays with the conventions of the unreliable narrator so that you end up feeling like March is a very reliable narrator of glorious and terrifying aspects of the world that neurotypicals can’t see.
Having discussed the literature, what is the future of autism and how we accept it in our society? And how do we get to hear from more autistic voices besides the authors of these books?
We still have a long way to go, but part of that future is already happening. Six years ago, when I started writing NeuroTribes, it was almost unheard of to feature autistic voices in news stories about autism. The public conversation unfolded behind the backs of autistic people, in part because autism was still nearly universally framed only as a condition of childhood.
One of the most insidious things about the anti-vaccine panic was that it rendered autistic adults even more invisible than they’d been for more than half a century behind the walls of institutions. “There were no autistic adults in the past. It’s all now,” said actress Jenny McCarthy, who became the public face of a generation of “mommy warriors” who felt robbed of having a typical child by vaccines.
Now when a reporter calls to ask me for a comment about autism, I often advise them to talk to autistic adults for the story. Imagine stories about racism that only quoted white people or stories about blindness written entirely from a sighted perspective. Autistic-run organizations like the Autistic Self-Advocacy Network are also demanding a place at the table when public policy is set. It was ASAN that advised Hillary Clinton to incorporate an epidemiological survey of adults into her autism plan, which is decades overdue.
There’s a thriving autistic culture in social media and new books coming out all the time by great autistic authors like Judy Endow and John Robison, as well as by parents and clinicians who understand the importance of listening to autistic people. Two reporters who talked to me about NeuroTribes for national publications (Dylan Matthews of Vox and Eric Michael Garcia of the National Review) are on the spectrum.
I was also interviewed by Alex Plank of WrongPlanet.net, the biggest website for autistic people, and by Robyn Steward, an autistic author in England who hosts a community radio show called “Autism Matters.” Leo Kanner would have found the concept of autistic media surreally improbable, but it’s Asperger’s world now – hopefully minus the Nazis.
I see myself as a transitional figure: a neurotypical science writer who promoted the inclusion of autistic voices in the global conversation at a crucial turning point in history. But that also means I need to know when to get out of the way.