In A Different Key: The Story of Autism by John Donvan and Caren Zucker

In A Different Key: The Story of Autism by John Donvan and Caren Zucker (Crown, 2016) 670 pages.

IADK by Donvan and Zucker

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.

 

Too Much of a Good Thing by Lee Goldman, MD

Too Much of a Good Thing: How Four Key Survival Traits Are Now Killing Us by Lee Goldman, MD (Little-Brown, 2015) 344 pages.

TMOAGT Goldman

One of the things we are finding out (see the March 2016 issue of Discover magazine) is that, as a species, homo sapiens isn’t a unique type of animal. What we are is the sole survivor of a large group of similar species who might have lived in the same place at the same time in Africa. We survived and they didn’t because our species was more than likely better at four things than all the competition. Ironically, the very traits that let us prevail when climate change, animal migration, warfare, and other forms of environmental stress tested our species are now the biggest threats that we have to endure far into the future.

Goldman’s book is the first I’ve seen to systematically explore some of these characteristics. He focuses on four things (and as a doctor, I trust him to be able to judge these kinds of things). These four things once helped us, but now hinder us as civilization replaces the wilds our species grew up in. There are three possible outcomes to the situation humanity finds itself in (p. 6): first, everything can keep getting worse until our children’s children’s children down the line no longer live long enough, or remain healthy enough, to raise enough people to keep the species going. Or, we can radically change our lifestyles enough so that we are able to counter the negative effects of these four things and continue, as a species, to make progress (although some might not be able to make the journey). Finally, we can take advantage of new scientific discoveries to either counter these four things genetically (through genetic modification) or treatments designed to counter their effects as we live our lives.

Before going on, just what are these four things Goldman focuses on? Here they are, as I would translate them (from p. 4) into all their simple glory:

  1. Hunger
  2. Thirst
  3. Fear
  4. Blood clots

Of course, there has to be a bit more about how these four basic characteristics, obviously critical to the survival of any individual in primitive surroundings, have become as much as liability as a benefit in modern civilization.

Let’s look at the list again and add some details:

  1. Hunger: We are still genetically a species that is programmed to eat and eat and eat when food is available in order to stock up on calories in the form of body fat to get us through the lean times between feasts and good harvests (I’ve read elsewhere that without fertilizers and irrigation, 4 out of every 10 crop years were utter failures). But now we’ve eaten ourselves into a world where half of the people in it are overweight, a significant portion of those are downright obese, and “lifestyle diseases” like heart disease and weight-related diabetes are rampant.
  2. Thirst: Our need for water, and the related need to replace the salts we shed through urine and sweat, makes us crave salty foods to the point where we are all at the risk of high blood pressure (HBP). This in turn elevates our risk of heart attack and stroke (the same process essentially causes both).
  3. Fear: We were and are a violent species, understandable enough when we had to fend off lions and tigers and bears (oh my!), but civilization has allowed most of us to turn our violent tendencies onto each other and assign peacekeeping tasks to police and armies. As a result, post-traumatic stress disorder (PTSD) and the related mental distress caused by bottling up much of our impulsive rage are making “normal” life hard for those we rely on the keep violence from spreading everywhere. I wrote about this type of thing before, in 2015 (Deep Violence by Bourke).
  4. Blood clots: Our species benefited in a violent environment by being able to stop bleeding quickly, before we all bled to death from a deep scratch. But this ability also can complicate our normal aging process, especially when coupled with high blood pressure (see #2 above). Fast clotting was even more critical in the days before hospital births, when bleeding to death was a frequent complication for women who had just delivered (this still occasionally happens, even in a modern hospital).

One thing struck me as strange when I read Goldman’s book. I was amazed at how many of the things we take for granted as leading to a “healthy lifestyle” were only discovered recently. For example, a cardiology textbook in the 1940s defined a blood pressure of 200/100 as high, but “mild” and “benign” (p. 110). Walk into any doctor’s office or ER today with that blood pressure and your next stop is likely to be the hospital and a heart monitor.

President Franklin Roosevelt died on 19 April 1945 of a stroke, but what killed FDR was really his high blood pressure (p. 88). FDR was 63 years old, an age considered very old back then, but not even of normal retirement age today (FDR had been US president for 13 years by then: how many presidential candidates are over 63 in 2016?) . Oddly, the effects of his high blood pressure were masked somewhat by his polio and the resulting inability to walk at all or stand (with hip braces) for any period of time.

But by 1945, the years of stress through WW II and the Depression had taken their toll. In 1931, before he became president, FDR’s blood pressure was 140/100. By 1937, as war clouds gathered, it went to 162/98, and then to 200/108 by D-Day in 1944 (p.166). At his fourth inauguration, in January of 1945, Roosevelt only spoke 500 words and was never seen on his feet again. At Yalta early in 1945, FDR was at 260/150, or “off the charts.” His doctors belatedly recommended a low salt diet (!), but by the time he complained of “a terrific pain in the back of my head” and died, his blood pressure was at 300/190 (p. 117).

Bottom line: always, always, always have the nurse or doctor take your sitting blood pressure in each arm, after five minutes of rest (p. 108). If they don’t, they’re taking shortcuts that put you in peril.

One more short take: as late as 1990, 1% of women died in childbirth in the poorest parts of the world, and 1 in 300 (one-third of all childbirth deaths) were the result of uncontrolled bleeding (p. 161), mainly as a result of unfortunate placenta separation (it turns out that much depends on where the attachment is made in the first place).

This book will teach you many things and, if you’re anything like me, scare you enough to make real changes in what you do and eat each day. (Last night, I went to a drive-through craving a burger and found they had just added to calorie count to their menu. Instead of the burger with 1150-1650 calories (plus the fries!), I ordered the simple chicken sandwich at 650 and fed the fries to the dogs. You have to start somewhere.)

(In a couple of weeks, I’ll talk about a little book I found called The Wandering Falcon that acts as a kind of counter-balance to the whole “what would we do without modern civilization?” line of thought.)

The Relic Master by Christopher Buckley

The Relic Master by Christopher Buckley (Simon & Schuster, 2015), 380 pages.

TRM Buckley

Today, we think of a “relic” as a piece of a discarded past, an object to be considered as obsolete as a buggy whip, something to be regarded as we wonder that people ever really cared for the relic in the first place. But in the early 1500s, specifically the year 1517 and a couple of years following, a relic was an object of veneration, tied to an “indulgence” that could trim as much as 500 years in purgatory off a soul’s torment after death before being admitted to paradise for eternity. Indulgences had a value all their own, although often tied to relics, and were bought the way we buy stocks today. The purchase price went toward building new basilicas and palaces for the Catholic Church, including Saint Peter’s Basilica in Rome and much of the rest of the Vatican.

Nothing prevented dukes and princes and other royalty in Europe from collecting relics of saints and martyrs on their own. The toe, a rib, or even the skull of a saint would do. The royals collected money from pilgrims who wished to honor or view or pray to the relic. And the more relics you had in the vault of the palace church, the more popular your place became as the last stop of the pilgrimage, complete with a feast and a fair and markets to sell to for everyone.

Today, many people think of relics in terms of Christianity, but many varieties of “holy objects” such as icons have always attached themselves to religions, and likely always will. (The exception might be Islam, which forbids not only portraits of Mohammed, but representations of any person or animal to discourage idolatry, leaving mosques with little choice but to decorate with intense geometrical patterns.) In the New Testament (Acts 19:23 and after), when Paul comes to Ephesus to preach about Jesus, a silversmith named Demetrius organizes a protest because he fears that Paul will forbid the selling and purchase of the little “shrines” that make of the goddess Artemis (Diana in the King James version). The crowd, incensed, riot and cry, “Great is Diana of the Ephesians!” If the silversmiths had just been smart enough to wait and say they were making “shrines” of the Virgin Mary, who would have cared?

Of course, the Medieval practice of indulgences meant that there had to be a constant supply of newly uncovered relics, procured by a professional “Relic Master” with an eye good enough to detect frauds and fakes (but not a good enough eye so that he starves to death from lack of business).

In Buckley’s book, Dismas, named after one of the thieves crucified with Christ, is relic master to both Frederick III “the Wise,” Elector of Saxony in the Holy Roman Empire, and Albrecht of Brandenburg, Elector, Archbishop of Magdeburg, and Cardinal Archbishop of Mainz. After Dismas attends a great “relic faire” in Basel (there is a nice map on the endpapers of the book), he is shocked to find a beat-up boat with obvious salt-water worm damage being passed off as Saint Peter’s fishing boat from the fresh-water Sea of Galilee (p.8). He makes a speech about the need to make sure the relic is authentic (it should, for example, always smell sweet, even if it’s the mummified thumb of a holy hermit). But no one listens to Dismas, presumably because they realize, one and all, that the market must expand to fill the inexhaustible need for sinners to purchase indulgences.

Albrecht wanted quantity in relics (he had a great desire for Dismas to find weapons, such as the sword that decapitated Saint Maurice: p. 11) while Frederick, who already sheltered some 19,000 relics back home in Wittenberg, wanted quality (such as the teeth or skull fragments of Saint Bartholomew: p.9).

Frederick also sheltered something else very much wanted in 1517: Martin Luther. But Frederick, who otherwise remained a devout Catholic and follower of the Pope, had no intention of turning Luther over to the church for “questioning” (that is, torture), mainly for political reasons. Naturally, this protection allowed Luther to circulate his (then) heretical ideas about indulgences and priests and sacraments far and wide, a necessary condition for this fledgling “protestant” movement to succeed.

Even more historical characters appear in the book (there is a nice section with short biographies starting on page 373). Paracelsus, the first modern doctor who championed the use of opium as a painkiller and mercury compounds to treat syphilis, makes an appearance (under his real name, Philippus Aureolus Theophrastus Bombastus von Hohenheim), as does Albrecht Dürer, possibly the only German painter who could compete with the Italians.

The book takes off when Dismas realizes that relic collectors don’t care if the boats or swords or teeth are real, just that they appear to be real. So when Dismas is fleeced of his “retirement” savings, he decides to recoup by making and selling a copy of the revered Shroud of Chambéry, which we know today as the Shroud of Turin (p. 373). (The discovery and analysis of another burial shroud of Jesus is story told in the prologue and epilogue that frames the story of Dismas: supposedly, the book explains this finding of another shroud in a Pope’s tomb in Rome.)

Dismas had hired his friend Dürer to create the fake. However, Elector Albrecht, who buys the fake to help finance his quest for a cardinalship, finds out he has been duped. As a result, Dismas is given a penance that basically forces him to steal the “real” Shroud of Chambéry and deliver it to Albrecht. Dismas twists Dürer’s arm to accompany him, and together they journey to Chambéry. Along with them are three soldiers (p. 133): Cunrat, Nutker, and Unks. These are really the Three Stooges, with Moe as the slightly smarter leader Cunrat, Larry as Nutker, and Curly as the hapless and clueless Unks.

Without giving too much away, the five travelers rescue a female apothecary in the Black Forest, but kill a pursuing count with a concoction of this newfangled gunpowder. But the dead count’s identity and signet ring, bestowed on Dürer, helps when they get to Chambéry. Unfortunately, they find that they are not the only ones who have come not to worship the sacred shroud, but to steal it. This process of moving relics is called “translation,” and the ultimate proof that the relic really wants to move from, say, Chambéry to Turin, is that the sacred relic allowed it to happen(!).

Once the heist takes place, the book threatens to devolve into farce in several places. That it doesn’t is mainly due to Buckley’s keeping it moving and twisting the plot into several forms of pretzel. This does not mean that this book is for everyone, and I mainly enjoyed the depiction of medieval life and culture. There is some discrete sex and lots of violence, but the book avoids raping unwilling women (why bother, with so many willing wenches and whores about?) and looking too starkly inside the castle’s dungeon (it’s damp, I tell you). An appendix (p. 377) does a nice job of assembling the sources used.

The ending leaves open the possibility of more adventures for Dismas, perhaps in the New World, and I wouldn’t mind spending more time with him. Then again, Dismas tends to be kind of prissy in places and should lighten up a bit. He could take lessons in this from Magda the saved apothecary and Dürer the carefree painter.