The Legacy of Autism and the Future of Neurodiversity
nolead begins By Steve Silberman
Avery/Penguin Random House. 544 pp. $29.95 nolead ends
Reviewed by Michael Yudell
nolead ends In a 1942 address to the American Psychiatric Association, Leo Kanner, the psychiatrist generally credited with discovering autism, said, "Psychiatry is, and should forever be, a science dunked in the milk of human kindness."
Kanner's faith in his work as a tool for good was unwavering. In naming autism as a discrete psychiatric condition just a year later, he hoped to improve the lives of children who had for several generations been given diagnoses like feeblemindedness, mental retardation, and childhood schizophrenia - diagnoses that often consigned them to lives of suffering and humiliation.
But tragically for the generations of children and their families who faced a diagnosis of autism in post-World War II America, psychiatry turned out not to be a field dunked in the milk of human kindness. Instead, as Steve Silberman disturbingly documents in this important new book, Kanner's best intentions did tremendous harm.
Although Kanner at first believed autism to be a heritable condition, within a decade he came to blame it on the behavior of parents, most often mothers. It was called the refrigerator mother theory, and as Kanner wrote, autistic children were "kept neatly in refrigerators that did not defrost. Their withdrawal seems to be an act of turning away from such a situation [cold, emotionally distant parenting] to seek comfort in solitude."
This theory, as ridiculous as it sounds, was considered by many the best science of the time, and it spawned several generations of torment for parents and children victimized by this awful idea.
NeuroTribes examines both autism in the past (speculating about the lives of several historical figures, including 18th-century British scientist Henry Cavendish, who Silberman suggests were autistic before autism was identified) and the rise and proliferation of the diagnosis.
Silberman's most important contribution may be the link he draws between the work of Hans Asperger in Austria (he identified "autistic pathology," in 1944) with the work of Kanner in America. It has been assumed that these two discoveries were independent, but it turns out that Kanner likely knew of Asperger's research, with one of Asperger's diagnosticians joining Kanner's team at Johns Hopkins. Silberman seems to suggest this connection drove Kanner's own discovery, but his evidence is more circumstantial than concrete.
In Silberman's telling, Kanner's vision was narrow, seeing generally only what became known as the low-functioning end of the spectrum: children with severe behavioral and intellectual impairments. Asperger saw autism quite differently - more like the spectrum, from severely to mildly autistic, in general use today.
That movement since the 1970s from narrow vision to broad explains for Silberman the dramatic rise in cases of autism, reflecting an expansion of the diagnosis. Thus he joins a huge, vigorous controversy. But by largely dismissing research into potential causes of autism, including parental age and maternal exposure to drugs during pregnancy, Silberman provides an incomplete picture of the larger field of autism research.
I suspect that is fine for him, because ultimately, NeuroTribes argues that what matters most is acknowledging that people with these conditions have always been with us, that they and their families have faced generations of stigma and marginalization, and that the rich history of people living with autism, in the past and today, should convey the importance of embracing "neurodiversity," a concept the book champions.
Advocates of neurodiversity believe that instead of seeing autism as an error of nature, "society should regard it as a valuable part of humanity's genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support."
This is an important and growing perspective, although in its service Silberman downplays the needs of those on the severe end of the spectrum, and the concerns of parents who may want to know the causes of their children's condition. Regardless, NeuroTribes makes an elegant argument in favor of neurodiversity - one we should heed as we continue to build a society dunked in the milk of human kindness.