NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

by Steve Silberman

The Siege, published in 1967, was the first book-length account of raising an autistic child by a loving and devoted parent.

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.

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 checklists of deficits and dysfunctions.

“We help Nat become the best he can be, and in the process, he makes us who we are,” she wrote. “We cannot be typical, we cannot be normal. But this is certain: We are OK.”

Instead of seeing the children in his care as flawed, broken, or sick, he believed they were suffering from neglect by a culture that had failed to provide them with teaching methods suited to their individual styles of learning.

It was as if the children were constantly generating rules about how things should be based on how they were when they happened to come across them. A walk taken along a certain route one day had to be taken the same way every time after that. A random sequence of actions—such as the flushing of a toilet and the switching off of lights before bedtime—instantly became a ritual that had to be endlessly reiterated. The most humble and ordinary day-to-day events became imbued with terrifying significance.

Epilepsy is now considered one of the most common comorbidities in autism, affecting nearly a third of the diagnosed population.

Asperger may have been the first clinician to notice that his patients’ imaginations occasionally anticipated developments in science by decades, forcing him to amend his statement that the interests of his little professors were “remote” from real-world concerns.

McCarthy would have had no need to seek out a diagnosis, because 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.

Imagine the child’s reaction to the futility of living in an incomprehensible world run by what must appear to him to be demanding, ritualistic, arbitrary and inconsistent psychotics—us!”

In 1972, the school enrolled its first students who were both autistic and deaf. To accommodate them, the whole staff learned sign language.

“I believe the sweetest reward of being a parent trainer is seeing a hurt, scared, timid, frustrated, despondent or angry parent blossom into an articulate, well-informed, assertive, energetic, and successful advocate for their child.”

enhanced ability in music, memory, art, mathematics, science, and technology that Asperger dubbed “autistic intelligence.”

In 1974, West Virginia became the first state in the Union to specifically include autism in its mandatory public education laws, opening the doors of classrooms to hundreds of kids for the first time.

“I believe the children loosely called ‘autistic’ or ‘schizophrenic’ actually represent a dozen or more different diseases or disorders, each with its own cause.”

Though he had been written off as incapable of learning at age seven, he developed dramatically in his fifties and sixties, prompted by the respect of those who had made a place for him in their lives.

“What Bill taught me,” Morrow says, “is that not only do people like Bill need society, society needs people like Bill.”

It’s hard to imagine another disorder composed of such seemingly oxymoronic extremes.

On the front lines, clinicians played fast and loose with the labels anyway. Judy Rapoport, former chief of child psychiatry at the NIMH, told anthropologist Roy Richard Grinker, “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.”

Estimates of autism prevalence began to increase worldwide after the publication of the DSM-III and DSM-III-R. To Wing and her Swedish colleague Christopher Gillberg, this was no surprise: awareness of autism among professionals was dramatically increasing at the same time that the boundaries of the condition were expanded. The new numbers reflected the estimates realigning themselves with the reality of the spectrum.

In 1991, autism was included in IDEA as its own category of disability for the first time, which enabled children with a diagnosis to gain access to individualized instruction and other services.

All the diagnostic criteria dissolve in solitude. That’s why teenagers with Asperger’s are reluctant to leave their bedroom for school: the signs of autism, and the degrees of stress and withdrawal, are proportional to the number of people present.”

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.

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.

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. The maker of the first stone spear, she observed, was likely a lone autistic at the back of the cave, perseverating over the subtle differences between various types of rocks—not one of the “yakkity yaks” chattering away in the firelight.

Aware adults with autism and their parents are often angry about autism. They may ask why nature or God created such horrible conditions as autism, manic depression, and schizophrenia. However, if the genes that caused these conditions were eliminated there might be a terrible price to pay. It is possible that 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.

As late as 2001, one of the most respected figures in modern epidemiology, Walter Spitzer of McGill University, described autism as “a terminal illness . . . a dead soul in a live body.”

“From very early on,” he explains, “I had the concept that you don’t throw people away for being broken.”

At the conclusion of her talk, Moreno suggested a more nuanced truth: that her life had been enriched in ways that she could never have predicted by coping with the challenges of raising Beth. By wholly investing herself in her daughter’s well-being, she said, her heart had been opened in ways that most parents of typical children would never know.

Sinclair described autism instead as “a way of being . . . [that] colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.”

This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

“We need you. We need your help and your understanding,” he said. “Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us . . . 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.”

Asperger’s notion that people with the traits of his syndrome have always been part of the human community, standing apart, quietly making the world that mocks and shuns them a better place.

“The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”

“NT is only one kind of brain wiring, and, when it comes to working with hi-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?”

For kids with limited expressive language like Leo, Shore has found that music can serve as a more natural medium of communication than speech.

a classic autistic strength: pattern recognition.

In fact, given current estimates of prevalence, autistic people constitute one of the largest minorities in the world.

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.

ONE WAY TO UNDERSTAND neurodiversity is to think in terms of human operating systems instead of diagnostic labels like dyslexia and 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 that it’s broken. Not all the features of atypical human operating systems are bugs.

By autistic standards, the “normal” brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.

Armstrong points out that, too often, the process of negotiating an Individualized Education 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.