Blazing My Trail: Living and Thriving with Autism. Published by the author. Kindle, $7.99.
Reviewed by Steve Silberman
It's fashionable to say that autism has become a fashion.
If you think overweening psychologists are hastily applying labels like Asperger syndrome to quirky nerds who should be perfectly capable of making their way in the world with no special help, assistance, or accommodations, you have plenty of company. This past January, for example, the New York Times ran two op-eds in one day making that claim, including one by a young novelist named Benjamin Nugent who declared, "Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome."
The source of his authority on the subject, apparently, was that Nugent himself once received such a diagnosis as a teenager -- at the urging of his mother, a psychology professor -- and appeared in an educational video called Understanding Asperger's in a "wannabe hipster polo shirt." Now, however, Nugent has come to believe that the behavior his mother took for the telltale signs of a developmental disorder was merely his geeky teenage lifestyle, which included spending "a lot of time by myself in my room reading novels and listening to music." He went on to say that the cure for his misdiagnosis was moving to New York City, where he was finally able to meet other formerly bookish kids and schmooze with them in cafés. Having left his dreary foray on the spectrum behind him -- followed by a "long time" of sulking in his mother's presence for having put him through the ordeal -- he's now a professor of creative writing in New Hampshire.
Nugent's glib report surely provided a kind of comfort to some readers, who could return to their lives secure in the knowledge that many of these "Aspies" whom one keeps hearing about are simply "withdrawn, bookish kids" unnecessarily labeled by their histrionic parents with the help of psychologists eager to vault aboard the latest diagnostic bandwagon. After spending the past couple of years interviewing and spending time with autistic people and their families for a book, however, I can tell you that Nugent's experience is the exception, not the rule.
Everyone I've met who has been diagnosed with Asperger's syndrome or other form of autism faces profound challenges in day-to-day life. Even the most "high-functioning" autistic people (a term I now avoid using, because it renders certain forms of cognitive disability harder to see, while obscuring the gifts and competence of those branded as "low-functioning") work tremendously hard to find and sustain friendships; to manage the jarring changes that intrude into the most carefully planned-out schedules; to maintain their composure in noisy sensory environments; to get hired for jobs worthy of their intelligence and skills; and to navigate their way daily through a minefield of unspoken social rules and cues designed by and for people whose brains are wired differently from their own.
That's one reason the revision of the criteria for autism in the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders -- the bible of psychiatry used to determine diagnosis, access to services, and reimbursement from insurers -- has become so controversial. Even psychiatrist Allen Frances, who led the task force that developed the criteria in the DSM-IV, has gotten into the act, claiming that spectrum diagnoses have become "faddish." Many autistic self-advocates suspect the American Psychiatric Association is about to pull a diagnostic sleight-of-hand by shaving off a portion of the population that would have been eligible for an Asperger's diagnosis under the DSM-IV criteria, and give them a newly minted diagnosis of Social Communication Disorder, which has no legacy services or support systems. Some fear the APA is trying to finesse the increasing scarcity and overloading of services for autism, when budgets are being slashed in the name of austerity, by manipulating labels to lower demand.
There is no question that people diagnosed with Asperger's syndrome have an authentic need for help, long after they've "aged out" of the meager support provided to kids until they turn 21. Contrast Nugent's breezy anecdotes about pissing off his schoolmates by "trying to speak like an E.M. Forster narrator" with this description of attempting to absorb an ordinary conversation written by Rachel Cohen-Rottenberg, one of the most passionate and articulate disability-rights bloggers, and author of a new ebook called Blazing My Trail: Living and Thriving with Autism. "When I hear, I see the spelled-out words in my mind, and I have to internally read and translate those words in order to understand their meanings. As a result, even in quiet environments, I cannot keep up with verbal input for more than five or 10 minutes without falling behind, unless the other person slows down his or her speech and leaves a number of pauses in which I can respond. Pacing is everything."
Or consider this list of activities that Cohen-Rottenberg identifies as particularly challenging:
Sweeping and mopping the floor
Going to appointments
Planning, executing, and transitioning between tasks
Working at a job
Autistic people in Cohen-Rottenberg's generation never got the chance to be diagnosed with Asperger's as kids, because the diagnosis didn't exist. It's easy to forget that just 40 years ago, there was no concept of a broad, inclusive spectrum that encompassed accomplished professionals like Temple Grandin and autistic people who may never learn to speak or put on their clothes in the morning without help. (Indeed, Grandin's debut memoir, Emergence, was initially billed as the first book by a "recovered" autistic person, because the idea that an autistic woman could enroll at a university, earn an advanced degree, and become a leader in a demanding field didn't seem possible.)
On websites for parents, an autism diagnosis is often framed as a heartbreaking event, an occasion for grieving the typical child they'd planned for. That's understandable and human, but it's illuminating to read statements like "Don't Mourn for Us" by autistic adults like Jim Sinclair, one of the pioneers who has inspired a generation of self-advocates to view their autism as an essential part of who they are, rather than as a pathology they might be cured of someday.
For Cohen-Rottenberg, who was 50 years old when she was diagnosed, the label arrived as a blessing. She felt she finally understood why she had been relentlessly bullied and teased when she was young; why she found certain environments that other people enjoyed (such as crowded restaurants) unendurable; why her first marriage went off the rails; and why she had to work so hard to parse non-verbal cues that her peers can take for granted. "I was like a person with mobility issues trying to run a marathon every day and keep up with people whose bodies worked differently from mine. Burnout was inevitable," she writes. "In a few short years, I seemed to go from a lifetime of being super-functional to struggling with basic things… It was my lifelong ignorance of being autistic that was catching up with me."
Unlike many of the ebooks reviewed at Download the Universe, Blazing My Trail offers no multimedia bells and whistles; it's just text with a few family photographs. But it represents the promising potential of the form to provide a venue for highly skilled writers who might never have been able to convince a corporate publisher that their message was capable of engaging a mainstream audience.
Cohen-Rottenberg's first ebook, The Uncharted Path, available as a PDF, recounted her difficult upbringing and her path to diagnosis. "My attempts at making contacts always felt a bit like trying to drive a car by gripping the steering wheel with my teeth," she wrote. Blazing My Trail continues the story, and addresses how she and her second husband, Bob, have worked as a team to manage her sensory sensitivities and social challenges while building a happy life together. Her unaffected honesty makes Blazing My Trail an uplifting journey -- not in the usual sense of being a heroic saga of a narrator "overcoming" disability with pluck and guile; but by bearing witness to the power of accepting and celebrating oneself exactly as one is.
Cohen-Rottenberg comes through her writing as a wise elder of her tribe and a role model for young people, as well as a smart critic of social attitudes toward disabilities, both visible and invisible. "If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit," she says. "Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one another as perfectly different and perfectly human."
Steve Silberman is writing a book about autism and neurodiversity called NeuroTribes: Thinking Smarter About People Who Think Differently for Avery/Penguin 2013. He is a contributing editor of Wired magazine and one of Time's selected science tweeters (@stevesilberman). He lives with his husband in San Francisco.