NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
By Steve Silberman
Forward by Oliver Sacks
Random House
544 pages $29.95
“Be prepared to overturn all prior knowledge you had about autism” — Uta Frith
Steve Silberman’s new book, “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” is going to make a lot of people angry. In fact, this book, an outgrowth of Silberman’s 2001 Wired article, “The Geek Syndrome,” could have been titled, “Chronicles of the Autism Wars.” It’s the most comprehensive history to date of autism’s lurching, 80-year journey through an ever-expanding maze of diagnostic and etiological uncertainty. With this one meticulously researched book, Silberman has forever changed society’s conversation about autism.
Although Freud is rarely mentioned nowadays in discussions about autism, the role of the individual ego has taken center stage in almost every chapter of this contentious drama. The professional ambitions of people like Leo Kanner, Bruno Bettelheim, Ivar Lovaas, and many other autism researchers have brought needless misery to countless families of autistic children. They have added decades to the bewildering task of untangling the myriad correlates — both genetic and environmental — that are always at play in autism cases. For many top clinicians, taking credit for breakthrough discoveries has trumped the well-being of their patients.
There’s no better example of this than Leo Kanner, a Johns Hopkins University psychiatrist. Kanner published his description of autism in 1943, about one year before Hans Asperger published — in German — the description of autism that tracks closely with today’s most widely accepted definition of the disorder. But since Asperger’s paper wouldn’t appear in English until 1991, his pioneering ideas were all too easy for Kanner and others to ignore (and even passively suppress). Asperger’s chief diagnostician, Georg Frankl, ended up running one of Kanner’s clinics at Johns Hopkins, and he diagnosed Kanner’s first three cases of autism, so Kanner was certainly aware of Asperger’s work through Frankl’s expertise.
Silberman writes, “This crucial link between the two pioneers of autism has escaped the attention of historians until now, mostly because Kanner studiously avoided mentioning it.” In an interview with Public Radio International, Silberman elaborated: “Kanner never mentioned Asperger’s work ever, ever, ever in his voluminous writings on autism which, you know, [are in] hundreds of papers. In fact, he doesn’t mention Asperger’s name in public until the 70s, when he says, ‘Oh yes Asperger … what that man discovered was, at best, a 42nd cousin of my syndrome that has already received serious attention.’ ”
‘Refrigerator’ Mothers
Thus, Kanner protected his turf, and as far as the English-speaking world could tell in 1943, Leo Kanner was the world’s foremost expert on autism. Unfortunately, he was wrong about a few diagnostic matters, most notably his belief that mothers were to blame for their own children’s autism. He called them “refrigerator mothers” because a handful of affluent test subjects seemed to show no warmth or affection towards their children. Kanner’s twisted theory, which fortunately is now forgotten in most parts of the world, exacted a cruel toll on innumerable parents of autistic children. Silberman writes, “By blaming parents for inadvertently causing their children’s autism, Kanner made his syndrome a source of shame and stigma for families worldwide.” Also, Kanner believed that autism is rare, when, in fact, it is as common as Asperger had always said it was.
This fallacy eventually led to the misapprehension of an autism epidemic after improved diagnostic criteria led to an increase in the number of children diagnosed with the disorder. Autism’s prevalence had been grossly underestimated under Kanner’s watch, and when the Diagnostic and Statistical Manual of Mental Disorders finally got in line with Asperger’s diagnostic criteria, all kinds of things began to happen, some good, some not so good, and some almost bordering on evil. Yes, the number of autism cases had soared, but not because of an epidemic. The number had risen because fewer autistic children were being misdiagnosed. Autistic people have always been with us, but most of them have lived their lives completely out of public view, confined to institutions for people with the most severe mental handicaps. Silberman notes that there are nearly as many autistic people in the United States as there are Jews. At least one in 68 schoolchildren, the CDC currently estimates, is autistic.
One of Kanner’s most significant contributions to autism research was helping to repair some of the damage he had done by erroneously associating autism with schizophrenia, but he never unequivocally retracted his early statements about this alleged association. For that matter, he never backed away from his “refrigerator mother” theory either, republishing, in 1973, his essays about parents who were “cold, humorless perfectionists” lacking “genuine warmth.” On the up side, Kanner may have helped promote the idea that autistic children should be raised in a “warm, flexible, growth-promoting atmosphere.” Makes sense. So, perhaps we’re obliged to give Kanner some credit for having — as Garrison Keillor puts it — “the sense that God gave geese.”
Although few parents nowadays are blamed for causing their own children’s autism, they’re still likely to be confused and beleaguered by the avarice-fueled claims of myriad autism treatment practitioners, many of whom lack professional credentials of any kind. In no other field has there been more widespread failure to differentiate between correlation and causation. Hence, the wholly irrational claims of a link between autism and vaccines continue to mislead parents many years after the first celebrity anti-vaxxer, Andrew Wakefield, was stripped of his license to practice medicine. Wakefield’s money-tainted findings — he received hundreds of thousands of dollars from lawyers who were suing over alleged vaccine injury — collapsed under an avalanche of scientific scrutiny, and his paper was retracted by his publisher, The Lancet.
After his conclusions had been demolished by numerous independent studies, Lancet editors told the Guardian that Wakefield’s published statements were “utterly false.” The British medical journal BMJ called Wakefield’s paper an “elaborate fraud.” Silberman surveys the damage: “The most insidious effect of Wakefield’s case study” was diverting the autism movement “from its original mission of demanding services and accommodations in education into a rancorous debate about vaccines.”
Little by little, Kanner’s views fell into disrepute, and by 1969, Silberman writes, he had “decisively lost his grip on the autism narrative.” Hans Asperger’s papers, once they had finally been translated into English, provided clinicians with a far more workable diagnostic model than anything preceding it. It was a new day for the parents of autistic children, and soon it would be a new day for autistic adults.
The rise of autism advocacy
There’s much to be disheartened about in “Neurotribes”: Children suffering in silence, many locked away forever in institutions for the insane; “professional” clinicians acting out of ignorance, or greed, or both; snake oil salesmen bilking thousands of dollars from desperate parents who would spare no expense to find a cure for their autistic child; fraudulent remedies, such as camel milk, bleach enemas, clearance of “dissonant” energy blockages, hyperbaric chambers, and parasitic cleansing timed to the cycles of the moon.
On the other hand, Silberman delivers quite a bit of long-awaited good news about autism, and the best of it is attributable to autistic people taking control of their own destinies in ways that would have been unimaginable a couple of decades ago.
In the early 1980s, autistic people began making their voices heard at the conferences of organizations like Autism Society of America, and they started forming low-tech social networks expressly for autistics, relying on printed newsletters to communicate but also meeting together in appropriately relaxed environments that came to be known as “autistic space.” In 1994, autistic author Donna Williams wrote, “Together we felt like a lost tribe. ‘Normal’ is to be in the company of one like one’s self . . . We all had a sense of belonging, of being understood . . . all the things we could not get from others . . . “ In essence, autistic people were designing their own treatment programs. Higher functioning autistics revealed — in plain English — the secret thoughts of autistics who lacked language skills. This was truly revolutionary: For the first time, autistic people could explain to clinicians what was really going on in the minds of completely nonverbal autistic children. The emergence of email, usenet groups, and other electronic modes of communication greatly accelerated the growth of this movement. And when the World Wide Web came along, it was like pouring gasoline on a fire. Autism advocacy had truly come of age, and it now began to gradually dismantle decades of accumulated misconceptions and stereotypes about autism, starting with the widespread belief that autistic people were inherently antisocial. Myths were shattered.
At the forefront of autism advocacy was the first autistic-run organization in history, Autism Network International (ANI). Silberman notes that ANI’s mission was to serve the interests of people “all across the spectrum, not just those considered high-functioning. All of ANI’s original founding members had been branded low-functioning as children and had gone on to earn university degrees.”
At this point in the story, Silberman relishes the opportunity to point out that our present-day ability to form enduring connections with one another via the Internet was conceived, constructed, and implemented by autistic engineers, the super-brainy “geeks” of the Silicon Valley, the very people who, in 2000, inspired Silberman to write “Neurotribes” in the first place. Patricia George-Zwicker, an autistic writer for the website Thinking Persons’s Guide to Autism agrees, “Autistic people have literally given the world the ability to be as connected as we are with technology. Without us, NeuroTypical people would still be in the Dark Ages!!”
The best known and most influential autistic author is Temple Grandin, one of the first adults to publicly identify as autistic. In 1986, Grandin’s first book, the autobiographical “Emergence,” startled autism experts and gave hope to thousands of parents of autistic children. By telling her own story of growing up autistic, learning to adapt, and earning her doctorate in animal science, Grandin gave parents the best reasons for hope that some of them had ever encountered. Best of all, she affirmed the hopes and aspirations of autistic adults who were still trying to find their place in the world: “If I could snap my fingers and be non-autistic,” she writes, “I would not, because then I wouldn’t be me.” This outlook helped popularize the idea of neurodiversity, the idea that neurological differences like autism and ADHD are the result of normal, natural variations in the human genome. Grandin 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.” Silberman elaborates: “It’s really only by listening to autistic people describing their own lives for people to see the beauty and the unique gifts of autism. I think if it weren’t for autistic people taking the stage of their own stories and the narration of their own lives, then autism would still be seen as just a series of deficits.”
Patricia George-Zwicker writes, “Accepting Neurodiversity is key. Autistic people belong here. We make the world better and smarter in so many ways, and it literally wouldn’t be the same, or as interesting, without us.”
In an interview with popfront.us, Silberman says, “It’s all about hope — parents and autistic people themselves should never give up hope even if they’re struggling, and should always have faith in a child’s potential even if they’re non-verbal or self-injurious. Everybody on the spectrum has a vast beautiful world inside them — whether or not society gives them the chance to express that is the question.”
ADHD expert Dr. Edward Hallowell is famous for encouraging parents and children to find the buried treasures in ADHD by viewing it as a gift that is difficult to unwrap. If we approach autism with the same mindset, we can see that people like Temple Grandin have shown us that many autistic children are walking repositories of hidden treasure.
Resources:
Read more about neurodiversity here: https://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity
Read Steve Silberman’s Wired article, “The Geek Syndrome,” here: https://archive.wired.com/wired/archive/9.12/aspergers_pr.html
