Earlier this year, my 5-year-old son was diagnosed with Autism Spectrum Disorder. The diagnosis did not come as a complete surprise.
Over the previous year, my husband and I had grown increasingly aware of our son’s socially averse behavior and rigid thinking. He avoided eye contact with most people and melted down if routines or food weren’t precisely as expected. And he seemed not to understand – or even be concerned with – social cues.
Still, despite his social and behavioral challenges, my son had unusual abilities.
He had taught himself to read when he was four and was a book lover with an incredible memory. His singular focus over the previous year had been learning everything – EVERYTHING – about outer space, writing “books” about the solar system and drawing thousands of pages of the planets in fine detail, including the hundreds of moons which he knew by name.
He often spoke like an adult and could sit and focus on tasks for long stretches of time. Although his introverted nature was not unlike many of our nerdy, socially awkward family members, we knew he probably had Asperger’s syndrome, that particular part of the autism spectrum that applies to kids like him: verbal, focused acquirers of information who can’t seem to make sense of the social world around them.
The moment the developmental pediatrician confirmed that our son had Autism Spectrum Disorder (Asperger’s syndrome having been folded into a broader umbrella diagnosis in 2013), we found ourselves part of the strange fellowship of parents with children on the autism spectrum who are told to look at their child’s challenges and strengths with new eyes.
While it was a relief to have an explanation for the behavioral challenges we were confronting on a daily basis, in the context of an autism diagnosis, our son’s precocious ability to read was reframed as a “splinter skill.”
His unusual ability to focus was “perseverating.” And his passion for data and facts was determined to be a “classic sign of autism.” “I wish I had better news for you,” the doctor said apologetically as we left his office, “but at least some of these kids are really smart!”
We were frustrated. How was it possible that his strengths and abilities were pathological? In the months that followed, we waded through the morass of behavioral, dietary, psychiatric and educational advice, becoming more confounded. The dominant focus on autism seemed to be on research into causes, preventions, and cures. Why? Where was the chorus of experts providing us with advice on how we, as parents, could champion and channel our son’s abilities while helping him cope in a world that would always seem alien and confusing?
For a parent of a child on the autism spectrum, Steve Silberman’s NeuroTribes: The Legacy of Autism and the Future of Neurodiversity is nothing short of a revelation.
Silberman’s premise, which he makes clear from the beginning, is not only that is there a place in the world for autistic intelligence, but that one of our greatest challenges as a society (especially given the rising number of autism diagnoses, which currently stands at one in 68) is creating a world in which that intelligence is fully utilized, where neurodiversity is not just “accommodated,” but celebrated.
The book grew out of reporting Silberman did for Wired magazine, largely in San Francisco and Silicon Valley, one of the regions where the “epidemic” of autism has been most closely watched (and where two crucial countercultures – that of the nerdy tech sector and the vaccine-fearing counterculture – find strange intersections).
The book begins with a lengthy history lesson, and indeed, it is through Silberman’s sweeping and lovingly detailed history of the evolution of autism that the reader unlocks the understanding of how our society came to our current understanding and response to autistic people today.
Although autism has always been present in humans, its characteristics were not fully articulated, nor was it identified as a unique disorder, until the 1930s, when it was “discovered” simultaneously by Hans Asperger in Austria and Leo Kanner in Baltimore. Both Asperger and Kanner noticed behavioral similarities amongst some children brought to their respective clinics. These were children who had difficulty making eye contact and with social interaction were preoccupied with rules and systems, and had extraordinary abilities in areas like math, art, music, and science.
Asperger was convinced that it was possible for children with this disorder (which he called “autistic psychopathy”) to thrive with the help of tailored teaching methods that would draw on their fascinations, and he foresaw important roles for them in contributing to the betterment of society.
Asperger was also the first person to recognize that autism was clearly a continuum, with nonverbal and verbal children sharing core characteristics. He called these children, affectionately, his “little professors,” since many of them were prone to talk about their pet interests at length. As the Nazis accelerated their plans to rid society of “mental defectives” with a large-scale campaign to euthanize disabled children and adults, Asperger gave the world’s first public talk on autism, in which he defended his patients’ right to exist.
Cognizant of the Nazis’ intolerance of visibly disabled children, Asperger focused on what he called the “most promising cases” of children in his care, arguing that these children were not only capable of accomplishing great things in the world, but that their social difficulties were inextricably linked to their gifts. His framing of autism likely saved the lives of many children, but before he was able to disseminate his work widely, his clinic was destroyed in an air raid–and with it, the case studies of all of his patients.
Silberman’s examination of Asperger’s life and contributions is made all the more poignant when one considers Leo Kanner’s radically different understanding of autism, which was to shape the diagnoses and approaches to treatment for decades to come.
Kanner, who saw only the most challenging cases of autism, determined it to be a very rare disorder consisting of a narrow range of behaviors. More significantly, he promoted the idea that autism had somehow been triggered by cold and distant parenting styles. “Refrigerator Mothers” were likely to blame, and only psychiatry could ameliorate the damage that had been done.
By emphasizing the most debilitating aspects of autism, and by implicating parents, Kanner paved the way for decades of mistreatment of autistic children.
The chapters detailing the lifelong institutionalization of children in horrific conditions where shackling, neglect and corporal punishment were the norm, as well as a chapter on the darker side of treatments such as Applied Behavior Analysis that are still widely used today, will be particularly difficult for parents to read.
Perhaps most significantly, Kanner’s work shaped the current emphasis on finding causes, prevention and “cures” for autism, rather than focusing on expanding services and designing adaptive technologies and spaces for autistic people. It also ensured that autism remained stigmatizing for families–a legacy that sadly persists today. From the moment of diagnosis onwards, parents are told to view their child’s strengths as deficits, to question the causes, and to hope for a cure.
It wasn’t until the 1970s that Asperger’s work was rediscovered by the British cognitive psychologist Lorna Wing, who was seeking answers to the variety of autistic traits she was discovering in the general population.
Largely due to her efforts, the clinical definition of autism was expanded to include the true spectrum it is today, and Silberman makes clear that it is the broadened diagnostic criteria that have been responsible for the rise in autism cases.
In addition to Asperger and a handful of researchers willing to question the status quo, the true heroes of Silberman’s book are parents and autistic people themselves who have fought for the full inclusion and acceptance of autistic people in schools, workplaces and the public sphere. Without the parental advocacy groups of the 1970s, disabled children would still be denied the right to a public school education; and parents are still on the front lines of fighting for services for their children in their schools and communities every single day.
Autistic people themselves have also stepped out of the shadows with the rallying cry “Nothing About Us Without Us,” proudly carrying the autistic label and insisting on full inclusion in policy discussions having an impact on their lives.
The neurodiversity movement is leading efforts to promote social support systems and highlight the necessity and value of neurological differences. And while Silberman’s focus is on autism, the concept of neurodiversity extends to anyone whose brains are wired differently, including those with dyslexia, ADD/ADHD, and mood disorders.
Silberman, who spent years with autistic individuals and their families to write this book, is remarkably restrained when detailing the medical interventions approaching quackery that certain members of the medical community have pushed on parents desperate to help their children. However, he clearly believes that we need to redirect at least some of the money that is being poured into the research identifying causes into expanding services and destigmatizing autism, and he makes a persuasive argument based on history alone.
A portion of Silberman’s work chronicles autistic innovators: from Henry Cavendish to Nikolas Tesla to Temple Grandin to Silicon Valley’s geeky workforce, many innovations in the modern world have come from autistic minds.
I recently got together with a group of parents who have young autistic children. As we shared stories of parenting our kids, two common themes emerged: the extraordinary abilities our kids have, and the immense challenges we all face in getting access to the services and support that our kids need. One of the strangest things about receiving an autism diagnosis for your child, in fact, is simultaneously receiving the message that your family is now part of a ballooning “epidemic,” even as the experience of advocating for your child often feels like a solitary exercise in having to proffer the same explanations and reinvent the same wheel, over and over.
Parents like myself are mired in the daily worries, exhaustion, and yes, joys of raising a child on the spectrum.
For me, the greatest contribution of NeuroTribes is that it reinforces and gives historical vindication to our instincts to create learning and living environments that respond to our children’s challenges while supporting their abilities.
That Silberman combines this analysis with so much warmth and respect for his subjects–autistic children, their families, and their champions–makes the book not just part of a parent’s toolkit, but also a source of wisdom and companionship, as if the caring hero of Silberman’s narrative, Hans Asperger, were still among us.