Mondays with Maureen: New book changes perspectives on Autism

Review: ‘NeuroTribes’ will change what you think about Autism and here’s why

By Emily Willingham
PLOS Blogs

“Not everything that steps out of the line, and is thus ‘abnormal,’ must necessarily be ‘inferior.’” –Hans Asperger

The subtitle of Steve Silberman’s new book, NeuroTribes, is “the legacy of autism and the future of neurodiversity.” But Silberman also delineates the legacy of our collective acts of humanity and inhumanity toward those who are different, tracing in exquisite and engaging detail a narrative that is as much about how we treat each other as it is about autism. In his meticulous, haunting, and sometimes hopeful account, he reveals not only the multifaceted features of the neurotribe known as autistic people but also the affiliative inclinations of all humans, the way we gather, clamoring, and build exclusive ways of being around shared beliefs—for better and for worse.

Filling in what was, before this book, a patchwork history of autism, Silberman’s story begins in the 18th century and follows the path of autistic people through the decades as they were persecuted, misunderstood, mistreated, killed, brutalized, and institutionalized. The perpetrators in Silberman’s telling are scientists, political leaders, and clinicians whose fixation on their interpretation of “normal” led to acts of deep cruelty and inhumanity against autistic people, deeds that span the spectrum from superficial to sadistic.

The narrative arc is roughly chronological, stretching across time and highlighting some of the Big Non-autistic Names in autism’s long, strange and often terrible trip: Hans Asperger, Leo Kanner, Bruno Bettelheim, Bernard Rimland, Ole Ivar Lovaas, Lorna Wing. Although some of these clinicians and researchers contributed critical insights about autism, they all brought their own psychological lenses to their work and interpretations, sometimes helpfully and sometimes to the terrible detriment of the people they thought they were helping.

Autism and scientific publishing

Silberman thoroughly covers the contributions of the various marquee names in autism research, making clear exactly how publications of their work became inflection points for the broader public understanding of autism. An example is Kanner’s seminal 1943 paper describing 11 cases of what Kanner called “inborn autistic disturbances of contact.”

Like some clinicians and researchers who followed him, Kanner shaped his published research and public talks neatly around his ambition to make his mark in the nascent field of child psychiatry. For Kanner, achieving that goal meant establishing his own narrow interpretation of autism as the archetype of the condition—and obscuring his familiarity with the diagnostic groundwork that Asperger had already laid.

Kanner’s success in constraining the definition of autism left many autistic people without support or services for decades. And as Silberman details, Kanner might have been the first autism researcher to channel interpretation to fulfill deep ambition, but he was by no means the last. As the 20th century closed and the 21st century dawned, autism clearly became a path to public attention for academic journals, researchers, and a news media increasingly hungry for readers.

Silberman deals appropriately with the most notorious of these examples, a now-retracted case series published in 1998 in The Lancet. The journal, says Silberman, dealt with peer reviewer concerns about the paper by dubbing it an “early report” to emphasize “its speculative nature” (p. 417). Despite this step, Silberman says, this “early report” became “one of the most influential journal articles in the history of public health … But it would also become one of the most widely and thoroughly refuted” (p. 420). Discussing this paper in a book covering the history of autism is practically compulsory. But Silberman rightfully treats it as a cautionary tale, showing that when personal and publisher ambitions take precedence over hypothesis-driven science and data, vulnerable populations bear the brunt of the consequences.

Studying the ‘protocols for personal engagement’

Midway through his sometimes-harrowing narrative focused largely on the historical context of autism research, Silberman includes what at first look seems like a digressive chapter on science fiction fandom and ham radios. But a step back from the text makes the relevance of this apparent detour clear: That chapter describes the hinge, the tool that autistic people used to open the door to a room of their own, to say ‘We Are Here’, even if these were words that they could not always speak.

As Silberman writes (p. 245), “The society of hams also enabled shy introverts to study the protocols of personal engagement from a comfortable distance.” And ultimately, the ability for autistic people to find and connect with others like them became a lifeline for some. One ham radio aficionado was finally diagnosed as being on the spectrum at age 70 and described connecting with his local Asperger’s support group as “like coming ashore after a life of bobbing up and down in a sea that seemed to stretch to infinity in all directions” (p. 247).

The book ends in the present, with the author’s portrait of an autism community that is, finally, self-empowered to create a more hopeful place of advocacy, acceptance, and understanding.

After finishing the book, I spoke with Silberman about his research and writing, his intentions with this careful work of humanity, and his own impressions of the all-too-real characters who have harmed—and sometimes helped—autistic people across the centuries.


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