Neurotribes.

Steve Silberman’s 2015 book Neurotribes: The Legacy of Autism and the Future of Neurodiversity is a history of autism, but one told through anecdotes of people with the neurodevelopmental condition or the scientists who studied it. It’s also an education, and an attempt to set the record straight that we are not, in fact, in the middle of an autism “epidemic,” but that the condition has always existed, even if doctors at those times didn’t realize what they were seeing.

Much of the history of autism is one of tragedy, as people with the condition were often treated as insane, or as imbeciles, and stuck in institutions or otherwise abandoned by their families. The condition was seen as incurable – meaning it was seen as something you’d want to try to cure – and that an autistic child was nothing more than an animal. This view persisted, at least in the west (there’s no discussion here of views of autism outside of the U.S. and Europe), until the early 20^th century.

That’s when two researchers working independently* had their Newton/Leibniz moment, as both Leo Kanner, working in the U.S., and Hans Asperger, working in Vienna, both published key papers identifying autism as a condition with a specific, and in both cases narrow, set of symptoms. Asperger’s name has lived on beyond Kanner’s, but at the time, Vienna was under Nazi control, and Kanner’s work and views took precedence on the larger stage.

*I got a kind note from Steve Silberman via Twitter, saying: “The biggest historical scoop in NeuroTribes is that Kanner and Asperger were NOT working independently, but shared two assistants, Anni Weiss and Georg Frankl.”

If you know of Asperger, it’s through the now-deprecated “Asperger’s syndrome,” which has been subsumed into the larger diagnostic term autism spectrum disorder. One of the most enlightening parts of Neurotribes is Silberman’s explanation of that entire process, although its roots are horrifying: Because the Nazis were murdering any children held in institutions for health or mental reasons, Asperger’s work focused on the socially awkward prodigies he found. This spurred the still-extant stereotype of the autistic savant, which was further cemented in the public mind by the film Rain Man, the history of which Silberman details at great length and with significant empathy for everyone involved in the film.

Kanner viewed Asperger much as Newton viewed Leibniz, and we’re all quite a bit the worse for it, as the rivalry meant Kanner worked to “own” the definition of autism for some time. He claimed the disorder (a term still in use in the technical literature) only affected young children – if they were older, they had schizophrenia or something else – and that the cause was parental indifference. The idea of the “refrigerator mother” who failed to love her child enough, thus giving the kid autism, persisted for decades, at least into the 1980s. When that finally started to crumble, parents began looking for other explanations, landing on environmental toxins and, with the help of a fraudster named Andrew Wakefield, vaccines.

All the while, parents and researchers were looking for a cure, in no small part because Kanner’s definition of autism excluded all but the most serious cases. Some attempts were well-intentioned, while others were (and still are) quackery, and even dangerous. There’s still an institution in Massachusetts that uses shock therapy on autistic residents, despite no evidence that it works (and ample evidence that it’s torture). The FDA has had to issue warnings about so-called “miracle mineral solution,” which is bleach by another name, and which Youtube for one has banned but refuses to remove instructional videos about. (MMS does not cure autism, or anything else, but it can kill you.) Silberman gets into some of this, although I think the bleach stuff largely postdates his book.

It took some substantial efforts by later researchers and especially by activist parents to bring about changes. Those parents demanded changes in how the medical establishment viewed and treated their autistic children, and lobbied for changes in the definition of autism so that school districts would be forced to provide accommodations for autistic students who were previously left behind or even told that they had to attend school elsewhere. The passage of the Individuals with Disabilities Education Act in 1975 and again in 1990 as well as the Americans with Disabilities Act in 1990 allowed autistic children to stay in public schools and required the districts to provide them with individualized education programs (IEP) to determine what accommodations and modifications the child needs to succeed in school. It shouldn’t have been that hard, but Silberman makes it clear that Kanner’s narrow definition and the stranglehold he had on the definition of autism, helped by a small number of others who seemed to profit from their work with autistic kids, made this process far more difficult.

There’s far more to Neurotribes than just a history, however. Silberman discusses a few notable historical figures who almost certainly were autistic, including chemist and physicist Henry Cavendish, the discoverer of hydrogen; and Nikola Tesla, inventor of an overpriced electric car. (Hold on, I’m getting a note here that that isn’t correct.) Temple Grandin makes several appearances on these pages as well. There’s also a deep dive into the correlation between autistic people and sci-fi fandom, including Claude Degler, a key early figure in spreading the gospel of science fiction (until his views on eugenics caught up with him), and perhaps an autistic person himself. Silberman argues that sci-fi fandom was one of the first safe spaces for autistics, as personality “quirks” were less important than one’s passion for the subject – and perhaps because those quirks were more common among the fan base anyway.

There’s a wealth of information within Neurotribes, even though the book is now seven years old and it seems like the medical community knows even more about autism now than it did then. It’s a well-researched and well-argued work, one that encourages empathy for autistic people but not pity, and if anything gives more respect to Wakefield, the NVIC, and other cranks than they deserve, presenting the views of people who seek to find non-genetic causes for autism fairly before explaining that the evidence says they’re wrong. And Silberman makes it very clear that autism isn’t what history tells us it is, or even what many people probably still think it is, thanks to Rain Man or, worse, Music. It’s a deeply humanistic work of non-fiction, and that alone makes it worth a read.

Next up: Dr. Stephanie Cacioppo’s Wired for Love.