That’s the question Steve Silberman asks in his March 2015 TED talk about “the forgotten history of autism.”
In his talk, Silberman notes that the trajectory of understanding autism as a condition and a diagnosis has not followed what science or experience might predict (disclosure: I am personally acquainted with Silberman and consider him a friend). Instead, he says, in researching his upcoming book Neurotribes: The Legacy of Autism and the Future of Neurodiversity:
I learned that what happened has less to do with the slow and cautious progress of science than it does with the seductive power of storytelling.
The storyteller in this tale, or at least its original narrator, was Leo Kanner, a child psychiatrist at Johns Hopkins. In the 1940s, he published a case series describing 11 boys who exhibited a specific suite of characteristics, including flapping and anxiety about changes in routine. Silberman, in his talk, notes that Kanner seemed to take a kind of proprietary ownership of what autism was and was not, discouraging the diagnosis in people who had seizures, for example, even though epilepsy is actually common among autistic people.
Silberman begins his talk by sketching out why autism has become such an emergent motif in the developing cultural panorama of the 21st century. Highlighting a graph showing an inexorable and steep increase in the prevalence of autism over recent decades, Silberman notes that the increase is a departure from Kanner’s own assertions that autism is a rare entity. Indeed, the steepening slope has led some people–and high-profile autism-related organizations–to assert that autism is an epidemic, like, as Silberman says, something you could “catch from another kid at Disneyland.”
But as Silberman notes, Kanner himself contributed considerably to that perception of rarity. The Hopkins psychiatrist bragged at one point that he’d turned away 9 out of 10 children from his practice who’d arrived as autistic based on the judgment of other clinicians but had departed without an autism diagnosis. He wasn’t the last clinician to express pride in undiagnosing people at almost exactly that rate.
How much of a role did this grasping ownership of the diagnosis of autism play in the public perception of the condition and its prevalence in the decades that followed? How much was it involved in the misunderstanding of autistic people who walked the world—or were institutionalized away from it—with other diagnoses or worse?
I’ve sketched out before in short form some of the ways we went from Kanner’s assertions of autism’s rarity to today’s 1 to 2%, and it has nothing to do with vaccines. Silberman, in his TED talk, traces this history with detail and color, and ultimately notes that “Kanner had been as wrong about autism being rare” as he was about asserting that parents were the (environmental) cause of the condition.
In observing the current rates of autism based on the US Centers for Disease Control and Prevention, now at 1 in 68 children, Silberman points out that if these numbers are accurate, then autistics are one of the largest minority groups in the world.
Silberman observes that a perfect triangulation of changes in criteria thanks to the work of the insightful Lorna Wing, along with the introduction of effective clinical tests and the popularity of the movie Rain Man, brought autism to the forefront of national and global awareness, from the clinic to the general public. And then, Silberman notes, another storyteller arrived on the scene:
Andrew Wakefield came along to blame the spike in diagnoses on vaccines, a simple, powerful, and seductively believable story that was as wrong as Kanner’s theory that autism was rare.
To be sure, autistic people have a hard time living in a world not built for them. [Seventy] years later, we’re still catching up to (Hans) Asperger, who believed that the “cure” for the most disabling aspects of autism is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential.
Silberman’s book comes out in August, and I’ll be posting a review of it here. Based on this TED talk, I’m holding out hope that this time, the right story will be told, one that shapes itself into a happy ending based on understanding, accommodation, support, and faith in potential.
Also on Forbes: