In A Different Key: The Story of Autism by John Donvan and Caren Zucker (Crown, 2016) 670 pages.
In the medical and social sciences, as in the “hard” sciences like physics and chemistry, the impact of a new article or book is often measured by how many older materials you no longer have to read. For example, once Einstein formulated that energy is equal to mass times the speed of light squared, a lot of people didn’t have to read all the literature speculating on the relationship of mass to energy (except if the detailed history of science was your main area of interest).
In the same way, people who are interested in the current state of things and people on the “autism spectrum” (as it is now called) and how they got that way can start and stop right here, with this book. This book is stunning in scope, yet eminently readable, and even as gripping in places as any suspense novel. Anyone who has a friend or relative that has been diagnosed (or, even worse, self-diagnosed or diagnosed by amateurs) as having autism or Asperger’s syndrome (which no longer exists, technically) should read this book. But even if you know one of the 4.5 people out of every 10,000 who are autistic (or is it 60 out 10,000 (p. 421): a rate more than 10 times higher?), this book will enthrall you.
I was surprised to find, as of the book’s publication in early 2016, that the person who was autism case #1, ground zero for the autism explosion, was still living in the same small town where he was born in 1933. The book’s first and last of its ten parts concern Donald, and it obviously helped that his parents were rich and respected and thus able to keep their strange son from being institutionalized all his life (but for a brief interval early in life (p.18) at a place called the Preventorium). The town is very supportive of their odd resident, and everyone soon learns that Donald’s quirks are not to be greeted with ridicule, but with bemused understanding and a shrug.
It might be best to briefly outline the content of the ten sections of this sprawling book. It closes with an Epilogue (p.547), a very helpful autism timeline (p.553), complete notes (p.563), a full bibliography (p.617), an authors’ note (p.643), acknowledgements (p.645), and very good index (p. 653). But please don’t think this is a dry, academic tome. The authors are award-winning TV journalists, and they know exactly how to keep your attention and keep the action moving briskly.
As I said, Part 1 covers Donald from the 1930s to the 1960s, and how one doctor finally decided he was looking at a new phenomenon. Dr. Leo Kanner’s name rhymes with “honor,” but with his Austrian accent, people thought they were taking to “Dr. Lee O’Conner” (p.26). But in Part 2, things pick up with the “blame game” (1960s to 1980s) when Dr. Bruno Bettelheim (his doctorate was in art history) decided that autism was the result of “refrigerator moms” who did not love their children enough (p.78). Several books, and TIME magazine, agreed, putting understanding their neurological differences back to square one. Trying to “talk” autism away with adult psychotherapy did not work well, and Bettelheim resisted all attempts to give his studies on a firm statistical basis (p.119).
Part 3 (1970s-1990s) takes autistics out of mental institutions and details the early steps of autism-specific researchers and organizations to help these unfortunates with scientific methods and evidence. These early efforts were fragmented: for example, east coast and west coast researchers did not always cooperate. Support on the west coast often depended on actors with autistic relatives (p.179) who could call the governor (former actor Ronald Reagan, for one) and ask him to sign legislation offering family aid.
Part 4 covers the behaviorist treatment of autism from the 1950s to the 1990s. Behaviorists, controversial even today, treat brain processes as “black boxes” and don’t really care what goes on inside, as long as what comes out is socially acceptable (many autistics have little sense of sexual shame or personal privacy). Those researchers often used cattle prods (!) to enforce acceptable use of the toilet and other “behaviors” (p.197). It wasn’t long before some parents and groups became convinced that these therapists were acting even more out of control than their children. In 1988, the Autism Society of American adopted a position against “aversive techniques,” even for parents with children who were at risk of self-harm at home (p.220). Nevertheless, is some difficult cases, there is little alternative.
Part 5 shifts the study to London from the 1960s to the 1990s. Researchers there tried to determine the “prevalence rate” and figure out who was “really” autistic, as opposed to just very odd or obviously brain damaged. Should there be 9 questions to answer, or 22 (p.284)? Here were the first hints of genetic causes and that the “extreme male brain” (autism is still a predominantly male disease) might be involved (p.304).
Part 6 covers the rise of the idea of an autism spectrum (1970s to 1990s). Here is the first mention of the work of Dr. Hans Asperger in Austria before and during World War II. He mainly worked, from 1938 to 1944 (p.316), with socially awkward yet verbally advanced children who hung around with adults instead of peers. These “Little Professors” loved routine and often fixated on corners of knowledge (like dinosaurs, or trains) which they explored to amazing depths (and before you could Google everything!). The resistance to anything German or relating to Nazis kept Asperger’s work under wraps until 1981. Initial acceptance of Asperger’s work had to deal with accusations of former Nazi cooperation in 1994 (p.327) and a devastating find in 2010 that the good doctor had helped to condemn these “handicapped” children to the early “work camps” with other mental defectives and Jews (p.339). By 2013, Asperger’s no longer existed as a separate condition.
Part 7 covers a weird interlude during the 1980s and 1990s when “facilitated communication” promised to give a voice to severe autistics (p.347). Eventually shown to be wishful thinking, this era also saw the rise of people who blamed autism on herpes, zinc, or inflammation of the gut (p.378).
Part 8 covers the appearance and importance of Temple Grandin on the scene (1980s to 1990s). For the first time, parents could talk to someone who could express how it actually felt to be autistic (p.403). This period also saw the release of the movie Rain Man in 1988. On the big screen, autism became something that did not seem to be so terrible, at least not all the time and in all cases (but in the end, “Rain Man” goes back to the institution, where he feels comfortable). Grandin’s biopic (Grandin is brilliantly played by Claire Danes), released in 2010, made the condition appear almost chic (p.434).
Part 9 covers the measles vaccine hysteria that still grips some people today. If not the vaccine itself, it must be the mercury used to increase its shelf life (p.449). The doctor who started the whole controversy in England later moved to the USA, made lots of money, but eventually had his day in court and lost (p.483) in 2007. Which made no difference to his supporters. But the simple fact that California, which quickly eliminated the mercury from vaccines, saw no decline in autism rates over a 5 year period, should put this theory to rest once and for all. People old enough to remember losing playmates to whooping cough or measles (which can be a nasty disease) or scarlet fever, and not so long ago (like the 1950s) do not understand what a great boon to humanity as a whole vaccination is.
No summary like this can do justice to this outstanding book. If you care about what your friends and neighbors might be going through, please read it for yourself.