With the generation of autistic people diagnosed in the 1990s now coming of age, society can no longer afford to pretend that autism suddenly loomed up out of nowhere, like the black monolith in 2001: A Space Odyssey. There is much work to be done.
The result of 8 years of thorough, meticulous research by Wired writer Steve Silberman, NeuroTribes is his epic take on the history and present of the autism spectrum. It covers a massive variety of topics, from how autism may have presented itself in the distant past, to how the condition in its varied forms was discovered independently at multiple times in history, to how it was understood (or misunderstood, as the case so often was), to the lives of autistics themselves, from ways some of them were able to make successful careers, improve the sciences and the arts, engage in self-advocacy, and change the public understanding and perception of the condition.
What sparked the writing of the book was initially Steve's interview of two bigwigs in Silicon Valley. Seemingly coincidentally, both of them had an autistic child. Surprised, Silberman mentioned this while chatting in a restaurant, whereupon a special education teacher came to him and said, "Autism is an epidemic here in Silicon Valley. Something terrible is happening to our children."
This led Silberman to write the article The Geek Syndrome
, which talked about how and possibly why autism seemed to be so prevalent in Silicon Valley. Was it nerd genes? Genius genes? Math-and-tech genes? Something other than genes?
After the article, Silberman received many letters from people, many asking him questions or telling personal stories. He heard from people who said they were intelligent or skilled and their kid had autism, or that they themselves suspected they had mild autism. He wondered what was going on, and began to look into it in more detail, spending the next 8 years reading about psychology and tech and learning everything he could about the founders of tech companies, the major names in sci-fi, classic scientists from centuries ago, the history of psychology, case histories of anyone who showed autism traits, the write-ups of psychologists who encountered autism traits, and much more. The conclusions he came to? Well...
The book covers many subjects:
- Examples of autistic traits in people dating back to centuries ago, such as Paul Dirac and Henry Cavendish. Many details of their personal lives are given, in great detail, to imply that these famous scientists may have been autistic.
- The history of defining autism, from it being described as "childhood schizophrenia" to "a form of incipient genius hampered by extreme eccentricities" and more, with psychologists such as Leo Kanner, Hans Asperger, and Lorna Wing coming up with their own discoveries and definitions.
- The history of attempts to treat autism, including very abusive treatments such a shock therapy, and especially heinous forms of Applied Behavioral Analysis that attempted to punish mild autistic behaviors (e.g. stimming) rather than attempt to understand their cause.
- The parent blaming phase of autism, where cold parenting was blamed for causing autism, and parents who deeply loved their autistic kids fought against that idea.
- How Rain Man increased awareness of (some forms of) autism.
- How the autism spectrum was discovered, encompassing Asperger Syndrome.
- How autism came to be increasingly understood for what it is.
- The autistic self-advocacy movement, and how autistics came to hijack the conversation about them and influence it themselves.
The book has a handful of recurring themes that present themselves:
- Autistics invented great things that changed the future. There are entire chapters dedicated to specific parts of science history, and the autism traits and actual diagnosed autistics involved in them. Silberman has really looked very closely at the lives of the people who invented things like ham radios and artificial intelligence, and while he avoids blatant retro-diagnosing, some of these people were in fact eventually diagnosed with autism. Others have autistic kids (see below about genetics) although were not diagnosed themselves. And some show a ton of autism traits, to the point where, Silberman argues, they may have been diagnosed if the diagnosis was available.
- The fact that Asperger's discoveries in the 1940s were lost has seriously harmed the lives of autistics, especially adults. From time to time, examples are brought up of the crappy lives, difficulty with maintaining employment, and social rejection, of autistic adults who weren't diagnosed until much later in life. One man was 70 when he got his diagnosis, after a lifetime of inability to keep jobs or girlfriends. Asperger's discoveries are brought up whenever another autism researcher independently discovered one of the same things Asperger already knew decades prior.
- Autism appears to be genetic. This is not only brought up directly, as multiple autism researchers have themselves come to this conclusion, but very frequently, when a parent with an autistic child is described, any autism traits that parent had are described as well. Silberman looked not only at the lives of autistics, but also their family members. Very frequently did family members have autism traits themselves. Examples are also given of families that have autism traits run in them for generations, until finally the one child ends up actually getting the diagnosis.
- Autism is linked to intelligence. Autistics frequently tend to have intelligent parents or other family members. Lorna Wing, the psychologist who invented the term "autism spectrum" and fought to get "Asperger's Syndrome" recognized as a distinct condition so people with it would seek a diagnosis and get help, was a very accomplished individual with a daughter who had severe autism. Many autism researchers have noticed that autistic individuals frequently have very intelligent and accomplished parents, and believe that this isn't a coincidence. Indeed, it was the seemingly unusually high amount of autism in Silicon Valley that led Silberman to begin his research for this book.
- Autism has always existed all across the spectrum, but wasn't widely recognized until recently. Profiling possible autistics of the past, and also digging through write-ups of psychology patients diagnosed in the past with conditions like "childhood schizophrenia" or unknown conditions that bore a remarkable resemblance to autism, is an attempt to point out just how common autism always has been in its many, varied forms. However, the unintended consequences of raising autism diagnosis numbers are covered in detail, including the infamous vaccine panic.“It’s a question of diagnosis,” Lorna said firmly. By expanding Kanner’s narrow definition of his syndrome to include more mildly impaired children and adults, she had expected estimates of autism prevalence to rise. That was precisely the point: making the diagnosis available to more people, so that they and their families wouldn’t have to struggle along without help as they had in the 1960s. “These people have always existed,” she said.
- Many autism researchers interpreted the same behaviors and traits in different ways.
- Hans Asperger noticed that his patients tended to not care about authority, but instead enjoyed learning for its own sake, rather than to please teachers. Asperger lived in Nazi-occupied Austria, so he saw a tendency to not look up to authority as a good thing. Other autism researchers saw a tendency to not look up to authority as a sign of being antisocial.
- When it came to special abilities or extreme intelligence in some areas, Kanner believed that autistics were not actually intelligent, but instead merely saying things they thought their parents wanted to hear in a sad attempt to earn their love and affection. Asperger, however, noticed these traits and instead referred to them as "autistic intelligence".
- Autistic children frequently had very accomplished, intelligent parents. Kanner saw this as evidence that the parents were cold and unloving, caring only about their careers, which is how the "refrigerator parent" thing came about. Asperger saw this as evidence that the parents were in fact passing on their intelligence to their children in an odd way.
- Autistic behaviors have been misinterpreted again and again, causing many problems and sometimes leading to tragedy. Directly related to the above. Autistics have been thought throughout history to be incapable of learning, incapable of empathy, incapable of introspection, incapable of emotion, incapable of friendship or emotional closeness, and other things that just aren't true. Autistic behaviors have been misinterpreted in many different ways, as being evidence of mental retardation, appeals for affection from cold parents, or deliberate willful defiance of authority. These misinterpretations have resulted in autistics being bullied, abused, institutionalized, fired from jobs, imprisoned, and kept out of full participation in society. Many examples are given.
- The spectrum is mega diverse. Examples of individual autistics and their life stories and/or symptoms are given again and again and again. There are so many different examples, it'll boggle your mind just how different autistics can be, despite the core characteristics showing up again and again.
- Not all characteristics of autism are bad. Silberman remarks from time to time about how characteristics of autism such as intense interests and curiosity, speaking very precociously at a young age, or showing unusual wit in situations where it would be unexpected, have been "pathologized" and seen as a bad thing. He doesn't deny that having an unusually sensitive sense of hearing that makes loud noises cause pain (or, in extreme cases, makes even soft noises agonizingly loud) is a bad thing, but he notes many times how even arguably positive autism traits have been portrayed as if they were negative.Clinical accounts of Asperger's syndrome tended to reframe neutral or even positive aspects of behavior as manifestations of deficit and impairment. Intense curiosity became perseveration. Precociously articulate speech became hyperlexia. An average score on a test became a relative deficit — evidence of an uneven cognitive profile.
- Rather than forcing autistics to act normal, society should learn to understand and accept autistics. This point becomes driven home more and more the farther along in the book one goes. It becomes more explicit with quotes from autistic self-advocates themselves, as well as others who have individually come to the conclusion that faking normalcy isn't always possible, nor often desirable. That the real problem in many cases is how society mistreats those who are different, rather than the problem of autism itself.He also began researching the history of the disability rights movement, because it struck him that many of his difficulties were not "symptoms" of his autism, but problems built into the ways that society treats people who don't meet the standard expectations of "normal".
This book contains the following tropes:
- All Psychology Is Freudian: Cold parenting was blamed for causing autism for a long time. Gradually, it became increasingly obvious that this wasn't true, but while that belief was prevalent, it had the nasty effects of parents being ashamed, and putting their kids in an institution and disowning them. The stigma of simply being the parent of an autistic was really high. Some parents even lost friends when it was discovered they had an autistic kid.
- Blessed with Suck: This is how some researchers came to view autism, as a form of intelligence and eccentricity that are so extreme that they become debilitating. See more under Disability Superpower.
- Composite Character: Rain Man, it is pointed out, is not solely based on savant Kim Peek, but also displays characteristics of autism based on two autistic men that Dustin Hoffman spent a lot of time with and studied.
- Disability Superpower:
- Many autistic individuals are described in detail, showing both their disability and their areas of skill.
- Multiple proposed definitions of autism indicated that autism was disability and intelligence that couldn't be separated, as they were directly linked. Asperger himself was the first to propose this. Other autism researchers, independent of his work (as his work was not well known for decades), would come to similar conclusions.
- Gone Horribly Right: Lorna Wing's expanding of the autism spectrum to include less severe forms of autism was intended to get people to seek diagnoses and help for their condition, and also to reveal how common autism truly was. However, it resulted in mass panics about an autism "epidemic", with people looking for culprits everywhere - vaccines in particular, and ignoring the psychologists who attempted to explain that autism was not on the rise but was merely being uncovered.
- Idiot Savant: Some of the people with ASD described in the book are examples of this trope. One example of this trope is two twin brothers who are severely autistic but can discover enormous prime numbers in their head, and can instantly count matches that fall out of a box in a split second (identically to Babbit).
- Insistent Terminology: Lorna Wing understood that many people would not want to diagnose their children with "autism" if their kids were intelligent and talkative, rather than fitting Leo Kanner's description of kids who were more severely disabled. So she invented the term "Asperger's syndrome", and convinced the people putting together the DSM-IV to list it as a separate condition from autism. This was an attempt to increase the chances of parents and adults seeking a diagnosis for their children or themselves; she believed that if they could say they had a fascinating condition called "Asperger's syndrome" instead of the dreaded "autism", they'd be much more likely to seek out the help they may need.
- Metaphorically True: In order to prevent the Nazis who ran his country from exterminating people with ASD, Hans Asperger hid the truth of the breadth of the autism spectrum from them, instead presenting only his "most promising cases". By pointing to his "most promising cases" and not mentioning the rest of the autism spectrum he'd seen, he technically didn't lie to his Nazi superiors about what autism could be like, even if he was making autism look like it was better than it often actually was. However, this deliberately constructed half truth about what autism was, later resulted in "Asperger's Syndrome" coming to refer only to the most intelligent and least overtly disabled of people with ASD.
- Vindicated by History: In-Universe. Hans Asperger's work was mostly forgotten in the 1940s, and his findings were buried by Leo Kanner's discovery of his version of severe autism in children. The idea that autism was a spectrum, that it was common and not at all rare, that it existed in children as well as adults, and that "once you know what to look for, you begin to notice it all around you", were all ideas that Asperger proposed but which were buried by Kanner and history alike. But over time, other autism researchers began to prove Asperger right: the definition of autism has been widened to include the spectrum that Asperger discovered, its prevalence is believed to be anywhere from 1-2% of the population (depending on where you get your statistics), and it is finally being recognized in adults. The term "Asperger Syndrome" was dropped, and now "autism" covers all of Asperger's discoveries in addition to Kanner's.
