'An Extreme Aloneness'
Friday, December 8, 2006
GEORGE AND SAM
Two Boys, One Family, and Autism
By Charlotte Moore
St. Martin's. 320 pp. $24.95
If you have an interest in autism (which often means that you have a medical interest or a child, grandchild, niece or nephew with autism), the novelist Nick Hornby, who has written an excellent introduction to this volume, assures you, "this might be the only book you need to read" about this vexing condition.
Hornby is half right. Charlotte Moore has not one but two autistic kids. She also has a non-autistic son, who has provided her with a convenient means of comparison. She is a professional writer, extremely competent, methodical and intelligent. Between her two boys, she has had occasion to try almost every treatment or diet or therapy that may alleviate the disorder. She provides a useful list of organizations at the back of the book and during her narrative describes a goodly portion of the sometimes harrowing, sometimes amusing behavior of autistic children -- what the often bewildered parents of the newly diagnosed may fairly expect in the future.
But Moore gives readers only half the information they need. She explains the symptoms that nervous parents should look out for, describes what they should do to care for these youngsters. (She stops at puberty.) She tells us what to do; she just doesn't tell us how to do it. For close to 300 pages, she becomes more austere and self-sacrificing, more and more saintly, until by the end -- I'm sorry, Nick Hornby! -- I wanted to give her a rude shove.
Autism was first identified as a medical condition in 1943 by Leo Kanner, who described it then as "an extreme aloneness" as well as an intense desire for "the preservation of sameness." Others went on to think of it as a triad of impairments -- of the imagination, communication and social interaction. What that means in real life is often an almost complete loss or distortion of language, an inability or unwillingness to connect with other people in traditional ways and an often startling array of strange, repetitive behaviors. (My grandson, for instance, spins necklaces for as long as anyone will allow him, runs or swims for hours at a time and vocalizes in the clear, haunting voice of an avant-garde composer.) No two autistic children are alike. No one knows for sure what causes autism, except that right now we are in the midst of an epidemic: In autism circles, it's commonly said that 1 in 166 children in America is born with this disorder.
There is no cure and Moore herself, to my knowledge, is the person who originally put to rest the consoling fiction that there might be a normal child hiding behind a mask of off-putting symptoms. Autists are autists "through and through," she insists. It's up to the parents, the families, to find the treatments that alleviate and the educational system that helps, then go ahead and implement these things. That's about 5,000 times easier said than done.
Although she is extraordinarily reticent about herself, we know that Moore is the kind of person who, before she had her first two boys, seriously considered having a baby who had been shown in utero to have no limbs except half an arm. But "I worried," she writes, "that keeping the baby would put our marriage under pressure." Then, after autism was diagnosed in both their sons, she and her husband, Min, decided to have another baby. When George's autism was diagnosed, Min "had a very bad reaction to the news, and . . . was in fact about to have a full-scale nervous breakdown." That information on Page 97 is pretty much the last we hear of the father of her three boys.
Any further hint of what happened to any of the grownups in this story is resolutely ignored. Instead, we are given an intensely detailed rundown on George and Sam. George is by far the more verbal, preferring, for the most part, to speak in quotations from television shows and children's books, which at first gave his parents the impression that he was an extremely precocious "wonderbaby." Sam is comparatively nonverbal but full of physical stamina. He is an accomplished escape artist, as are many autists. Their autism eluded diagnosis for the first few years of their lives. Doctors, Moore correctly observes, are notoriously chary about sharing this news, which in turn keeps the kids from getting medical and educational attention, as well as the governmental funding they deserve. Although there is no cure, a system of treatments is known to ease or "detour" the condition. George responded to behavior-modification therapy; Sam does well on a non-casein, non-gluten diet. They both remain autistic, but they may be said to have improved.
Autism parents all have their horror stories, and Moore has a double handful. She tells of Sam's various escapes and rescues: "Police helicopters," she writes, "have been called out on several occasions." The boys' eating habits are dutifully recorded -- autists tend to live on potato chips and thin air, which often makes a mockery of all the attendant diet jargon. Again and again, in hair-raising particulars, Moore piles on details of this behavior or that. Her sons need next to no sleep; they flap, spin, hum, yowl. Perhaps the most original and helpful part of this book is the author's passionate plea for special education for these children at a time when American parents' usual wish is to get their kids mainstreamed in the forlorn hope that some "normalcy" will rub off on them. Mainstream classrooms are exactly what your autistic child doesn't need, she writes, and then makes a clearly reasoned case for her viewpoint.