I went to a school concert recently. As the teenagers leisurely tromped onstage, I idly scanned the crowd. My eyes stopped instinctively at one young man—then a second. Who knows, maybe everyone else in the audience was doing the same thing: something about these boys just caught the eye for some reason. Perhaps it's because it's such a strong part of our human nature to notice, categorize, and analyze why someone else is different.
These young men who caught my attention looked ill at ease in their own skin. They weren’t chatting with their neighbors like most of the other kids. Without knowing anything of importance about them I could tell they were socially awkward. Geeks. Nerds. I could even armchair psychoanalyze these kids as being on the autism spectrum.
How could I tell? How can any of us sense, even from a distance, that someone is just “not quite right”—in other words, not like us? I’ve seen this same analyzing stare from strangers for many years as they watch my kid, who is also on the autism spectrum. I know it well. In a way, it bothers me—“Just let him be who he is without your personal judgments on what kind of a person he is or what kind of a parent I must be.” And yet I find myself at times, like at the school concert, doing the same thing.
Are we instinctively programmed to value human symmetry? Are our personal worlds not right until we homogenize everyone around us? It seems true. And yet there’s something so “ugly American” about the thought. Many of us would probably reject the idea on its surface—but then go right on staring.
Before I could write a review of NeuroTribes by Steve Silberman, I’ve had to digest it for the last month. I’ve had to reconsider everything I’ve thought about autism and do some soul-searching as I’ve examined our family history “on the spectrum.” This is a long book, a comprehensive history of autism and the development of the field of psychology in the 20th century, and although I think it's fascinating reading, I'm not sure if a casual reader would want to read in its entirety or would benefit from just reading excerpts.
The author makes the compelling case that we are not suffering from a recent autism epidemic but rather that the increase in numbers is a result of the diagnostic criteria for autism being broadened to give children legal claim on special services. It makes a lot of sense to me, especially since my kid is one who was able to receive some special services at school once we had that doctor's note with a diagnosis.
Regardless of the "numbers," after reading NeuroTribes, I’m viewing autism in a whole new light, as a wide spectrum of traits as unique as individuals instead of a disorder that needs to be cured. Looking back, I regret the years of wasted effort focusing on fixing my child’s weaknesses instead of building him up through his strengths. It seems we are in a vicious circle with these kids that aren't quite like us: we pathologize their personality--we define it as autism and then try to cure it. So here's the thing. Autism is primarily related to difficulty in social interactions, so what if this is not a disease but just a different kind of communication style that we neurotypicals don’t get?
This video mentioned in the book, "In My Language," created by an autistic woman to explain her language and communication, was startlingly revelatory for me. It completely turns the conversation about autism on its head as we consider that these individuals are different but not less than us. I truly think it is worth everyone's time to see a new perspective by watching the short video.
I know I've been jumping around a bit, but here’s a scenario that may help personalize what I'm saying. Imagine that you are hosting a guest from another country. Perhaps this is a remote area where they aren’t connected with the outside world and haven’t been exposed to various alternative social customs. What would you do if the guest acted or communicated in ways that seemed unusual or weren’t quite socially appropriate for your culture? Teach him how to do it your way? Respect his ways of communicating that might be different from yours but still have value? Scorn and punish him for acting according to his native culture? Try to fix him in all the ways he's “wrong”?
It’s helped me reframe autism by thinking of it this way. Perhaps we spend so much time trying to fix people or cure autism instead of helping them live their best lives within their circumstances. It sounds logical at first to try to find a cure--but anymore, I don't think that's asking the right questions. Instead of throwing money at research, perhaps money would be better spent in financial aid to parents and individuals who need therapies for developing life skills that will help them survive in what must be a frightening and alien world of neurotypicals.
Going forward I want to be more appreciative of the way that autistic individuals work so hard to do what comes naturally to me. Instead of being the objects of pity or just The Stare, they should be the receipients of our admiration for being strong and smart and brave. As I—and I hope all of us—change our mentality, the ones who will truly benefit are ourselves as we become the best in humanity to encompass those we can’t understand.
The following are passages from the 2015 hardcover edition of NeuroTribes, by Steve Silberman, that I thought were especially meaningful and relevant:
p.3: They were more like a tribe of digital natives with their own history, rituals, ethics, forms of play, and oral lore. While the central focus of their lives was the work they did in solitude, they clearly enjoyed being with others who are on the same frequency. They were a convivial society of loners.
p.9: 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.
p. 14: "If you had 100 kids with autism, you could have 100 different genetic causes." [There is] a wry saying popular in the autistic community, "If you meet one person with autism, you've met one person with autism."
p. 15: Very little of the money raised by advocacy organizations like Autism Speaks addresses the day-to-day needs of autistic people and their families By focusing primarily on funding searches for potential causes and risk factors, these organizations reinforce the idea that autism is a historical anomaly--a distinctive problem of modern times that could be solved by a discovery that seems perpetually just around the corner. 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.
p. 16: 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 behavior 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."…A clinician would likely say she is exhibiting self-stimulating behavior…[but Baggs is] celebrating the joy of her existence on her own terms.
p. 48: Stimming (self-stimulation) [is] one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it's called fidgeting and it's rarely considered pathological.
p. 78: [On the book Making Peace with Autism]: Instead of being the story of a family's triumph over autism, Susan's [Senator] book was an account of taking the first steps of a lifelong journey of discovery with her son. "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."
p. 94: These children [at Hans Asperger's clinic] were bundles of paradoxes: precocious and childish, sophisticated and naïve, clumsy but formal, standoffish but lonely, attuned to the music of language but insensitive to the rhythm of reciprocal interaction.
p. 128-9: Said Asperger, "This boy's positive and negative qualities are two natural, necessary, interconnected aspect of one well-knit, harmonious personality. We could express it this way: this boy's difficulties--which particularly affect his relationships with himself and other people--are the price that he has to pay for his special gifts. … The good and bad in a person, their potential for success or failure, their aptitudes and deficits--they are mutually conditional, arising from the same source. Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives." …The special gifts of these children were inextricable from their impairments.
p. 351-3: Lorna [Wing] began a quiet but determined campaign to expand the concept of autism to include the people who had systematically excluded from Kanner's walled garden [narrow diagnostic criteria]. Her strategy was to work on two fronts simultaneously. First, she would attempt to persuade her colleagues that autism was not a categorical diagnosis but a dimensional one (not a "yes" or "no" but rather "of what type?"). To replace Kanner's unified syndrome, she proposed the term the autistic continuum. While there were clearly many shades and hues along this continuum, all autistic people seemed to benefit from the same highly structured and supportive educational approaches, just as Asperger predicted.It was equally apparent that a person could occupy one point on the continuum at a given point in their lives and another point later. Some children…would remain profoundly disabled…but others blossomed in unexpected ways when given an accommodating environment and special consideration by their teachers. …Next, Lorna introduced a new diagnostic label, conscious of the social stigma that the word autism carried. This was less a strictly empirical decision on her part and more like smart marketing. She wrote:
Parents without special experience tend to overlook or reject the idea of autism for their socially gauche, naïve, talkative, clumsy child, or adult …The suggestion that their child may have an interesting condition called Asperger's syndrome is more acceptable.Over time, Lorna would lose her taste for the word continuum, because it suggested an incremental gradient of severity, from least to most severe, when she was suggesting something more individualized, nuanced, and multidimensional. …Ultimately, she adopted the term autism spectrum. She like the sound of it, which evoked pleasing images of rainbows and other phenomena that attest to the infinitely various creativity of nature. Clinicians readily adopted the phrase, because it helped explain what they'd been seeing in the real world for decades. It was a meme destined to go viral, so to speak…
p. 372: Temple Grandin…told [Dustin Hoffman] that the one thing she wanted more than anything else in life was for someone to hug her--but the moment that anyone did, she couldn't bear it.
p. 397: The fact that the syndrome shaded into subclinical eccentricity raised a question that cut to the core of the entire psychiatric enterprise: Was Asperger's syndrome truly a mental disorder or a common personality type in its most extreme form? Asperger's 1944 description suggested a more holistic view: it was a personality type that could become profoundly disabling in the absence of adequate adaptation by the patient and the people in his or her environment. Volkmar cautioned his colleagues, "Odd and unusual behaviors do not, in and of themselves, constitute a 'disorder' unless they are related to a manifestation of serious dysfunction within the individual.'"
p. 399: Clinical accounts of Asperger's syndrome tended to reframe neutral or even positive aspects of behavior as manifestations of deficit and impairment.
p. 399: "As I explain to parents, the cure for Asperger's syndrome is very simple--it is not surgery, medication or intensive therapy," says Tony Attwood, one of the world's leading authorities on the subject. "It is taking your son or daughter to their bedroom, leaving the bedroom and closing the door. You cannot have a social deficit when you are alone. You cannot have a communication problem when you are alone. Your repetitive behavior does not annoy anyone when you are alone. 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 degree of stress and withdrawal, are proportional to the number of people present."
p. 400-1: [Regarding the release DSM-IV diagnostic manual:] Spotting the signs of autism--once the arcane skill of the initiated few--became the job of nearly everyone involved in pediatric medicine, psychology, and education. In fourteen years and a handful of revisions, the DSM had gone from a slim volume that sat unread on dusty shelves in institutions to a nine-hundred-page behemoth that found its way into classrooms, courtrooms, community clinics, research labs, congressional hearings, pharma stockholders' meetings, social service agencies, and guidance counselors' offices. The entire clinical infrastructure of autism had been transformed from a channel for optional reporting of isolated cases to a network for active surveillance of the general population. Inevitably, the more that clinicians and educators looked for a condition, the more they found it. The upward trend that began in the wake of the DSM-III-R began to snowball after the publication of the DSM-IV.
p. 401: [Regarding an error in DSM-IV of "and" instead of "or" that went uncorrected from 1994-2000:] The impact of the botched language was potentially significant. By reanalyzing the field-test data using the erroneous wording [in DSM-IV], Volkmar found that "about 75 percent of children identified by clinicians as not having the disorder (true negatives) were incorrectly identified as having it according to DSM-IV." For epidemiologists gauging the DSM-IV's impact in the crucial period that would go down in history as the years a mysterious "autism epidemic" took hold, it was a statistical nightmare. Yet, until author Roy Richard Grinker called attention to the typo in his 2008 book Unstrange Minds, hardly anyone outside the usual tiny circle of experts was aware of it.
p. 430: The B.'s were well aware that the protocols and conventions of nonautistic society were opaque to them, and they were required to "ape human behavior" at work, as Mr. B. put it, to avoid alarming their professional colleagues. But Sacks reported that they had come to feel that their autism, "while it may be seen as a medical condition and pathologized as a syndrome, must also be seen as a whole mode of being, a deeply different mode or identity, one that needs to conscious (and proud) of itself." At home with other members of their tribe, in an environment designed for their comfort, they didn't feel disabled, they just felt different from their neighbors.
p. 436: "Being autistic does not mean being inhuman. But it means that what is normal for other people is not normal for me, and what is normal for me is not normal for other people," [Jim Sinclair] wrote. He compared himself to "an extraterrestrial stranded without an orientation manual."
p. 440: [Jim Sinclair] realized that the same behaviors that had been viewed for so long as inherently antisocial could become social in a group of autistic adults, particularly if there were no clinicians around to pronounce them pathological.
p. 450: Each person who came to Autreat had their own unique set of abilities and intense interests, which they had been pursuing for years in solitude with monastic devotion. "Each was a star in the sky," Valerie [Paradiz] reflected, "and [my autistic son] Elijah was a part of that universe."
p. 450: People with the traits of [Asperger's] syndrome have always been part of the human community, standing apart, quietly making the world that mocks and shuns them a better place.
p. 458: It struck him that many of his difficulties were not "symptoms" of his autism, but problems built into the ways that society treats people who don't meet the standard expectations of "normal."
p. 463: Ironically, the syndrome that made Asperger's name a household word in the 1990s after decades of obscurity also disappeared from the same edition of the manual [DSM-5], folded into the umbrella of autism spectrum disorder.
p. 464: "One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves," [Julia] Bascom wrote, adding that autistics are no longer willing to be "spectators in our own stories."
p. 469: Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behavior and needs that manifests in different ways at various stages of an individual's development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938.
p. 470: 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.
p. 471: 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.
p. 472: 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.
p. 477: [Gloria Rimland:] "One of the most important things I learned from his teachers was to work with his strengths rather than trying to correct his deficits."
p. 477: He [Gloria's husband] and Gloria had given [their son] something better than normal: a community that celebrates him for being exactly who he is. Midway through the journey of his life, Mark has the most precious and elusive thing that anyone can hope for. He is completely at home on earth.
Really liked this, Jen. Very interesting and enlightening.
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