Saturday, Jul 5, 2008
Last summer, a man in California shot his 27-year-old autistic son to death and then shot himself. I understand why.
Sep 27, 2003 | Lose track of time on the phone, get distracted with the mail, daydream over a cup of coffee, that's all it takes. The odor has finally made its way down the hall. When you see the balled-up pants and diaper on the floor you know you are too late. A bright red smear across the door, the molding, the wall. Turn the corner and the bedroom is a crime scene. An ax murder? In fact, it is only your daughter at her worst. (Worse than three days without sleep? Worse than ear-splitting screams that physically hurt, actually cause you to drop what you hold in alarm, compel you to shriek back at your delighted child who smiles at you sincere as a spring day?) Shit everywhere. Splashes of blood glistening like paint, black clots, yellow-brown feces, and a 3-foot-in-diameter pond of vomit that your daughter stands in the middle of, a dog-eared copy of Family Circle in one hand, reaching for the TV with the other. She is naked except for stockinged feet, blood soaked up to her ankles. Hands dripping, face marked like a cannibal, she wears an expression of utter bewilderment: What's happened to me? Where am I? Is this good? Am I OK? There being nowhere to walk without stepping in some bodily emission, you throw bath towels down like a bridge to get to her.
Stripping her unavoidably stains you. A bloody hand print on the square of your back as she balances herself when you roll down her sopping stockings. You hope she touches nothing else but what does it matter as the bathroom remains appalling in spite of the previous cleanups: cabinet handles encrusted with dried excrement, brown swipes on the light switch, corner of the mirror, shampoo bottle, Q-Tips, ceramic figurines, curtain louvers. (Holiday guests take you aside to warn you of rodents in unusual locations. Ancient turds in drawers, inside books. You thank them. Apologize. Yeah, it's an ongoing problem.)
In the warm rain of the shower she proceeds to dig. She is excavating for what remains of the impacted stool, hard as a French roll. This entire episode, this habit, the result of some maddening control issue. The behaviorists, the gastroenterologists, the living-skills experts all suggest their strategies and therapies and videos and diets and oils and schedules. Certainly she knows what you want -- appropriate toileting. And there are occasions when she does just that. Goes in, sits, finishes. This, maybe 5 percent of the time. Some huge, softball-size stool discovered in the toilet bowl. You shout for each other and gaze in wonder as at a rainbow or falling star. That's how excited you are.
Get in the shower with your daughter. Wash her hair three times, scrub her down, between the toes, everywhere. Take an old toothbrush to her nails. Towel her down. Her hair, lightly -- enough. Better stop. Know how she hates that. Let the rest air-dry. Get her dressed. Diaper. Thank God for extra large Good-Nites. (Remember the college gal at Safeway in her Birkenstocks and hemp sun hat: "Didja know," she must inform you, "it's disposable diapers that are filling up America's landfills?") Next, deodorant, sweat pants, the rest. Rewind the movies. Pop in her favorite CD soundtrack ("Annie") and program it for loop. Pull out a couple of old Redbook magazines. Make sure all the doors are locked. Remember when she wandered away, found in the middle of the street, a garbage truck honking at her like she's some stray mutt.
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Sooner or later, parents raising children with severe learning disabilities receive the "Welcome to Holland" essay by Emily Perl Kingsley. It describes a couple planning the trip of a lifetime to Italy. They prepare and study and learn everything they can about their cherished destination. When their plane lands, though, an announcement: They have arrived in Holland. Holland? They wail. We've dreamed all our lives of Italy. Italy is where they want to be. Not here!
"But there has been a change in the flight plan," Kingsley writes. "You've landed in Holland and there you must stay." New guide books, a new language, a completely different group of people than those you hoped to meet. Worse still, "everyone you know is coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'"
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Two hundred years ago most of these kids were tossed down the well or thumped against the fence post. It was either that or watch your own torn to pieces by the coyote, or trampled to death in the corral, or drown in the duck pond or tumble off a ledge or wander off in a blizzard. If you were of an educated class, institutionalization became an option. A way out. There were always the few, though, whose pride or familial loyalty or stubbornness would not allow them to abandon such a child. Upright, determined mothers -- mostly -- who would rescue the idiot from the snowbank, from their husband's impassive grip, and nurse it and attend and teach the strange thing until the child might even say "hello" when ordered and carry a basket of eggs without stumbling.
There's just something missing in his head is all. He be slow, like your Uncle Bert. The husband had grown up seeing three-headed lambs and bizarre carrots looking more like udders. He was aware of nature's imperfections. Sometimes it snowed in August. Sometimes the bread didn't rise. Best to throw out that mix. Best to keep the lines clean, the herds strong, purebred. But his wife refuses to push the runt away. Her husband, a man who shoots old mules and pulls out the dead weed and makes a Saturday night vest from the skin of a stillborn calf, has neither pity nor patience with the wife's indulgent efforts in the matter of the idiot. He will ignore the child. Like the lame piglet and the other orphaned stock following the wife around for the bottle, if she wants to put up with that, well, just keep 'em out of my way.
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Autism. Auto: for "self," or "same." The tendency to view life in terms of one's own needs and desires ... unmindful of objective reality. (Webster's) At one time a generic term applied to children navigating pre-social orientation. Developmental psychologist Jean Piaget noted 6-year-olds playing marbles as completely indifferent to rules, fairness, winners, losers. Two or more side by side yet no group norms emerged. Possibly each child played an entirely separate game. "[Their] relations to the world are autistic -- determined largely by the wishes and preferences of the individual."
A tiny but multiplying percentage of seemingly healthy children persist in spurning socialization, cocooning themselves from human contact. Pediatric shrinks, at a loss, anoint the manifestation Serious Emotional Disturbance, later sanded down to "disorder." Enter Bruno Bettelheim, who postulates his infamous "refrigerator mom" theory. Everybody remembers this from Psych 101. How to explain these peculiar, silent, radically remote children? Normal and handsome in every other respect? Freudian, clearly. Cold, aloof mothers disdaining the maternal bond. Curiously, other siblings either below or ahead of the odd child have no complaints. Her ex-husband, his pride squashed, confused, castrated, weighs in for the prosecution: "That bitch was an iceberg! Kid wouldn't go near her." Of course, the kid wouldn't go near anyone. Anyone at all. (Autistic infants, it is believed, produce abnormally high levels of endorphins at birth; they receive no pleasure from bonding with their mothers and, by extension, ignore incentives for social interaction.)
Today, autism is recognized as a profound and mysterious neurological disorder characterized by certain behavior types and patterns of interaction and modes of communication. A spectrum disorder, in fact, encompassing so many symptoms that intake counselors, after exhausting considerations of Tay-Sachs, Fragile X, Kleinfelter's and Turner Syndrome, still categorize whole generations of 2-year-olds as "Other Health Impaired."
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