Wednesday, April 28, 2004

Gorillas and autism. The two topics don't immediately seem to go to together. But then, most people have preconceived ideas about both: hostile King Kongs and children who can't be brought into human communication by any means. Dawn Prince-Hughes' book Songs of the Gorilla Nation: My Journey Through Autism dispels both stereotypes.

OK, so I'd read enough animal books to know that gorillas are not all that violent -- nothing compared to humans! And I was familiar with the idea that what most people think of as "autism" (specifically identified as Kanner's Syndrome) is just the far end of a spectrum with "normal" at its near end, with some of the middle areas identified by such names as "Asperger's Syndrome." That middle ground is "characterized by difficulties in processing stimuli, sensory oversensitivities, and challenges in social interaction." And who hasn't encountered those things some of the time? The author describes rituals from her childhood: "I also wanted to keep as many of my own accoutrements as possible the same. This meant that I did not want a new toothbrush, new clothes, new shoes. I continued to drink out of my favorite blue baby bottle until I was almost four, when it was replaced with a deep violet tumbler made of aluminum. I wanted to drink only root beer at that point . . ." I don't think this will sound particularly unusual to a lot of parents -- the concept of "security blankets" spread from the Peanuts comic strip because being attached to an object is common among kids -- and even adults; I'm reminded of the movie Pulp Fiction and its character Butch who risks his life to go back for a family heirloom, the watch owned by four generations. An incredible number of the traits the author describes from herself can be found in people who would never be considered, and many people who are eventually diagnosed with Asperger's Syndrome are not diagnosed until adulthood. "Most high-functioning autistic people, not knowing what is "wrong" with them, develop a lifetime pattern of using their intelligence to appear normal," Prince-Hughes points out, and this reinforces the public image of what constitutes autism.

(However, some of the ways people cope with problems, be they neurological ones like this or any other kind, are not necessarily healthy in the long run. Drinking at a young age, dropping out of high school, and becoming homeless may have been the best ways available at the time for her, but one really wishes there had been other options.)

Price-Hughes' description of her earliest attempts at romantic and sexual relationships are particularly interesting because they bring up what everyone expects from first impressions of a person and how easy it is to mistake lust for love. The author compares herself to Seven of Nine from Star Trek: Voyager -- "I find that I am only part "human" and very much something altogether different; I am overwhelmed by the social demands of "normal life"; and I am lonely." Then a visit to the zoo leads to her great interest in watching the gorillas -- their own interactions, and how zoo visitors act toward them. "The gorillas don't speak human language, look the way humans look, move the way humans move. They are stupid. This is why gorillas are captive. This is why crazy people are captive.We are the animals who don't speak the language, look the looks, move in the right ways . . . It is easy for those who are not captive to forget that those who are remain individuals."

Price-Hughes' interest in the zoo gorillas led her first to read on her own and then to seek out academic programs that would let her learn about them and gorillas in general. This book details the individual gorillas at this zoo and tells about their behavior; I found this particularly interesting because all the other books I've read on apes have either involved observation of them in the wild, or in laboratory environments where they are not in family groups. This different setting allows for more detailed observation of their interactions and their individual differences -- the story of the different gorillas' tactics when given the Halloween jack-o'-lanterns on the first of November was fascinating: how this one went for the biggest pumpkins, those two for whichever were nearest, another seemed to test them to find the best quality in a similar way to grocery shoppers in the produce department, and still another chose the one with the nicest carving. And human similarity to our ape relatives actually helped Price-Hughes: "I tried to apply the things I'd learned from the gorillas in social situations. I tried to put people at ease by acknowledging them with quick sideways glances and smiles -- which evolved from submissive primate grimaces and are intended to convey that no harm is meant." And so on.

The gorillas became the author's friends to such a degree that when one called Congo died, she took some of his hair to Africa to bury, as Congo's body was going to be dissected and analyzed in the U.S. Price-Hughes was also able to continue a long personal relationship and continue academically through a Bachelor's, a Master's, and eventually a Doctorate degree. None of it was easy -- could it be for anyone? -- and only through researching a younger relative's condition did she find out a name for what might be her own condition. However, just having a name and a diagnosis to point to does sometimes help in dealing with other people, and sometimes also with one's own emotions.

Price-Hughes is a proud parent of a son, but she is still also connected to gorillas and other apes. The single most amazing thing in this book for me was her story of meeting Kanzi the bonobo (the species formerly known as pygmy chimpanzee):

"When I first met him, he asked me to play chase, and so we ran up and down along the fence, back and forth, him with a big bonobo smile and me slipping into my natural gorilla ways. Suddenly he stopped, grabbed the lexigram board containing the symbols he uses to communicate with, made a series of gestures, and then pointed to the lexigram board. I had to explain apologetically that I didn't understand what he was saying. Sue and I discovered that he had realized I was a "gorilla," had remembered seeing videos of Koko the signing gorilla, formulated the hypothesis that gorillas use signs to communicate, and then employed accurate ASL signs to ask, "You . . . gorilla . . . question?" No one, not even Sue, knew that he had retained signs from watching the Koko video. He had gone through all of these cognitive and emotional steps to try and bridge the communications gap between us."
Wow. It would be impressive for a human to pick up enough words of a foreign language from a (non-language-teaching) video to form a new question (not just parroting the same sentences already heard), not to mention the chain of thought. It isn't always easy for humans to realize consciously what it is that someone's physical mannerisms remind them of, either. Even if Kanzi is the Einstein of bonobos, his example shows us how much thought the furrier beings on this planet can be capable of, and justifies a lot more respect for apes and contemplation of the similarities between the human and the other higher primates. Price-Hughes' book will stretch your mind on these subjects.

Thursday, April 15, 2004

I've read a lot of books about child abuse. (There's a stack of papers on the floor by my computer of reviews and comments that I need to add to my bibliography of children's and young adult books about abuse.) However, this is the first time I've read the story of a child abused through Munchausen's syndrome by proxy. I had actually heard of that particular mental disorder before, but then I have a brain full of all kinds of obscure things. "Munchausen's syndrome," named after the exaggerating Baron von Munchausen, is a disease where people fake illness or do things to make themselves sick, so that they will receive sympathy or care from others. "Munchausen's syndrome by proxy," or MBP, takes the deception one step further: a caretaker lies about the illness of someone dependent on them and may induce symptoms in the dependent person. The doctor who wrote the foreword to this book says that approximately 1,200 new cases of this are reported annually in the U.S., which seems like a lot if you look at it from the point of view of the people, mostly children, who suffer so that some adult in charge of them can get emotional satisfaction.

In Sickened: The Memoir of a Munchausen by Proxy Childhood, Julie Gregory tells the story of growing up "fragile as a microwave soufflé," being forever tested for heart problems, migraines, food allergies, and anything else that her mother or whatever doctor is seeing her this month can think of. Being given medication that never cures anything, just makes her sicker than she was before. Being told, "I'm the mom: I know what's going on here. So if he asks you questions, you just let me answer" before doctor appointments, even though the elementary school girl already notices that "as she runs down the symptoms, I know some of them aren't all the way true." And when something is really wrong, her mother makes it worse: waiting hours to take her to have her broken wrist set (one during third grade, the other during fourth grade). Even a couple of incidents of misdiagnosis or parental error might befall any family. But Julie, and her younger brother, and even the foster children who arrive later, all seem oddly prone to all these different illnesses, and perhaps someone might have noticed this if it weren't for the secluded country house and the changes of doctors. (Or perhaps not; all the abuse stories I've read make me very sceptical about what people are willing to notice.) Her parents are hardly healthy in other ways either; her father makes her eat used tissues after she leaves them on the floor; her mother threatens suicide on multiple occasions.

Selections from Gregory's medical records throughout childhood are included in the book (doctors' names blacked out) and it's amazing how many can be summarized as "patient reports such-and-such symptom but we can't find anything wrong." Or perhaps it's not surprising at all; the parent is considered the authority, the one who knows when a child is acting cranky because they're tired and all those other not-obvious connections between outside and inside the offspring they're raising. If only all parents were really trustworthy interpreters.

Mom thinks I'm allergic to the new carpeting in our house, but Dr. Phillips puts me on an elimination diet to see if it's something I'm eating. He tells her to take chocolate, meat, eggs, dairy, and bread out of every meal I eat.

After our appointment, Mom and I amble down the aisles of the supermarket, my fingers looped through the metal slots of the cart as I watch what she pulls off the shelves: Oreo cookies, pork chops, Grade A eggs, two-percent milk, and a couple loaves of Wonder. Bay's Grocery doesn't seem to have any of the foods Dr. Phillips wants me to eat.

At sixteen, Julie is the one who discloses enough of what's happening to get the foster children taken away from her parents; she spends some time in foster care for her own safety ("And I wasn't sick anymore. The whole time I was in foster care, I didn't take any heart medications because they all got left behind when I ran away. Instead of seeing doctors, I spent my free hours jumping off the diving board and the public pool and shopping for clothes with my hospital [summer job] paycheck. It was going on six months since I'd seen a cardiologist...") but her parents go to court to get her back. "It was probably me, I told myself, just having a rough time adjusting to adolescence. Or, as Mom and the school counselor had decided in tenth grade, just an incredibly fertile imagination." Even once she's away from home, her upbringing hangs on: "The skinny and ravenous hospital girl of thirteen, the girl whose mother would not feed her, has given way to the skinny and ravenous girl of twenty-three, who cannot feed herself. [...] He [the doctor] doesn't ask me if I am eating. I don't know that I'm not. The way I care for myself is no different than the way Mom taught me to, following the doctor's advice."

Julie is in her mid-twenties and in a college psychology class before she ever hears of Munchausen syndrome by proxy. When she sees talk therapists, they are nearly as ignorant: "Most times I do not feel like a client, but an educator who pays to teach my therapist about MBP." But she identifies what has happened, faces her past and, unlike her brother and many others who were abused as kids, does not push all the bad times out of her mind. And she continues to take the brave steps of keeping children out of her mother's hands, when she finds out that her remarried mother has taken in children of her husband's relatives, putting up a web site, and eventually writing and publishing this book. I hope it spreads awareness of this condition and saves others from going through anything like her own experience.

Saturday, April 10, 2004

Recently I picked up my big old omnibus volume of the Hitchhiker's Guide to the Galaxy series for relaxing reading while I was fighting a cold. I'm not all that picky about format (but I have had very little money for much of my life) so it's quite rare that I buy a hardcover version of something I already own in paperback. This series, Gone with the Wind, and Alice in Wonderland/Through the Looking Glass are the only ones I can think of where the paperbacks became so battered that I bothered to replace them with hardbound versions. For the Hitchhiker's books, the omnibus volume offers an author's introduction explaining why the books, the radio series, and the BBC television show have somewhat different plots, as well as an additional short story, but it's for the texts themselves that I acquired it.

Re-reading the Hitchhiker's books reminded me of how wonderful they are. Well, the first four. I read them out of order originally (second, first, fourth, third, I think) back in middle school, these stories of everyday Earthling Arthur Dent and his unwilling journey through time and space with Ford Prefect, an alien who got to know Arthur while stranded on Earth; Ford's two-headed, three-armed semi-cousin Zaphod Beeblebrox; Tricia "Trillian" McMillan, astrophysicist and mathematician who met Zaphod at a costume party in London. Douglas Adams was the master of digression, adding in random short chapters about planets entirely inhabited by pens or other gleefully ridiculous topics that somehow seem to explain a lot about how the universe works. Sometimes the digressions even ended up relating back to the main plot later, but that was a bonus. The fifth book, Mostly Harmless, doesn't live up to the others; it has its funny bits and if it hadn't followed such outstanding books it would probably rank above average, but compared to the first four it seems forced. However, I am thinking that my younger brother is about the age now that I was when I encountered the series, and perhaps I should buy him a copy of the first book and pass on the hilarity to a new generation.

I went on to read Adams' underappreciated Last Chance to See, a very different type of story because it's true. Adams and zoologist Mark Carwardine journeyed around the world to visit the habitats of various endangered animals (many of which, like the kakapo and the baiji, you may never have heard of if you haven't read this). However, Adams' "ignorant non-zoologist" narration is very reminiscent of Arthur Dent's bewildered Earthman at times. The book has its humor, but not like the Hitchhiker's books; it may be easy to laugh at the idea of ill-tempered aliens blowing up the Earth and all its creatures to make a hyperspace bypass, but not so when real-life humans drive the Yangtze river dolphin (baiji) to near-extinction through pollution and boat accidents. Adams was justifiably proud of this book for increasing awareness of the situation of many beings on this planet among readers who might not have picked up a book on wildlife otherwise.

And after I finish that, I'll probably pick up Dirk Gently's Holistic Detective Agency and its sequel The Long Dark Tea-Time of the Soul, going back to the humor but in a more convoluted way than the Hitchhiker's books. Because reading some Douglas Adams always makes me sorry when it's over.