While it might not always have its own section in your local Barnes & Noble, autism as a subject of study and advice has kept hundreds of books on the subject in publication for decades. We’ve taken a close look at a couple of the more scholarly tracts here—including the work of Temple Grandin and Neurotribes, which we will revisit shortly—as well as lighter, kid-friendly books that seek to alleviate or address a specific symptom autism.
However, the last six months have seen the release of two lengthy tomes that look at the relatively short, but compelling history of autism: Neurotribes by Steven Silberman and In A Different Key: The Story of Autism by Caren Zucker and John Donvan. Unlike past histories before them, increased availability of materials and previous research helped all three scholars probe deeper into autism’s early years to identify those early advocates and parents who pushed society to look past what was once seen as a reason for shame towards something that we now commonly associate with savants and other unique traits.
Of course no medical history is without its missteps and autism’s history is rife with them, abuses of power and misdiagnoses that set some research back years. The books take the reader back to the infancy of autism research. In the late 1940s, psychiatrists declared that they had found autism’s cause: cold parents — particularly mothers — who did not love their children enough. Leo Kanner, one of the first psychiatrists to study the condition, abandoned his own theory that autism was innate in favor of what would later be called the ‘refrigerator mother’ hypothesis.
“If Kanner had really stuck to his guns and gone with his instincts, it’s possible the whole refrigerator mother theory never would have evolved the way it did,” Donvan says. But it did, and for the next two decades, researchers targeted mothers and fathers as the cause behind the diagnosis, identifying them as defective. By sticking to scientific orthodoxy, scientists remained mired in the present misperceptions.
Donvan says, “The history of autism has shown that, time and time again — particularly in the early days — researchers failed to examine their own assumptions and biases.”
This failure at self-analysis came to define much of the history of autism, as the fifties and sixties often saw those suffering from schizophrenia mistakenly being diagnosed with the condition. According to Silberman, scientists in fact saw those with autism as less than human and devised treatments that were more akin to torture than actual medical treatments.
“The first question that should be asked in any research project is, “Would you do this to a non-autistic person?’” Silberman says, noting that asking adults with autism for their input is a crucial second step. “Autistic people should be seen as valuable collaborators in your work, rather than as passive subjects.”
Today, he does concede that researchers do truly seem to be motivated by a genuine desire to help those with autism to live a better life and understand the many nuances of the condition. But both pairs of authors are quick to point to the decades of wrongful assumptions and ill-conceived treatments as a reminder from history to never grow complacent in our scientific beliefs. After all, what is considered convention today might be considered lunacy in twenty years. But by focusing on the wellbeing and care of the patient, both authors believe we’re headed in a better place.