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.”
Media presentations emphasize the savants: the 6-year-old Beethoven or the human calculator, or there, on Discovery Health, a teenage Rodin. The average autistic children, not excluding the savant, struggle with varying degrees of developmental retardation. They can operate the VCR but cannot button their coat. Have no interest in markers or crayons but will spend hours tearing paper, leaves, twigs into micro particles. Some are high-functioning — can read and speak, attend college, develop careers. Temple Grandin (autism’s John Nash), a world renowned authority on cattle psychology whose visionary stockyard designs have transformed one-third of the bovine and pork operations in this country alone, strolls through corrals of half-ton Herefords. They snort like grizzlies and paw the earth. She knows that one switch of their mighty heads would crush any man’s clavicle yet they allow her to walk among them, scratch their necks, communicate. The complexity of human interaction, however — reciprocity, Romeo and Juliet — remains as elusive to her as colorless green ideas sleeping furiously.
For better or worse, autism may be in the throes of its own 15 minutes of fame. It’s had recent cover stories in both Newsweek and Time and features on virtually all the TV magazine shows. Look, there’s NFL star Doug Flutie frolicking with his autistic kid while shilling for a long-distance provider. Beck holds benefit concerts for autism research. Nicholas Sparks’ recent supermarket potboiler concerned a missing child with autistic symptoms. A fictional senator on “The West Wing” filibusters Congress on behalf of his autistic grandchild. Our biggest stars share the screen with autistic protagonists: Richard Dreyfuss, Tommy Lee Jones, Bruce Willis, and Tom Cruise, most famously, supporting Dustin Hoffman’s “Rainman,” a watershed entry in the MR Film Festival. Other screenings celebrate the asylum romps, “King of Hearts,” “One Flew Over the Cuckoo’s Nest,” “Awakenings,” “Quills,” “K-Pax,” films presenting madness as romantic, adorable or courageous — hence, “A Beautiful Mind.” Some are only excuses for actors to chew scenery — witness Sean Penn in “I Am Sam” or worse, Elizabeth Shue’s embarrassingly artificial portrayal of autistic Molly in the 1999 movie of the same name.
The movies prefer to apply the humanistic model to disability so that any attendant bleakness or the utter incomprehensibility of some conditions becomes only aberrant behavior immaterial to the subject’s uniqueness as a human being. This same psychological model, however, views its members as basically rational, oriented toward a social world and motivated to getting along with others. But the autistic rarely makes adjustments to the world. Their own world remains self-generated and self-contained. Autism, as one text suggests, is “imagination self-determined.” A world of, perhaps, pure imagination. Is this a curse, or are they in fact angels among us? Some autistic youngsters learn to sing before they ever speak. Others spin in place, their eyes closed, for hours, in their own encapsulated rave.
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Celestial metaphors do little to temper the exhaustion you struggle with as your daughter, still going strong at 3:30 a.m., cranks out her version of the diagnostic handbook for developmental disorders’ Greatest Hits. This in spite of receiving her meds back, when? 7 that evening? Enough detox, compulsion blocker and synapse stim to sober a junkie. But for some reason — full moon, diet, puberty? — her sleep patterns have been cross-circuited. The deeper into brutal night she marathons the more wired, delirious, hypermanic she becomes. You have isolated yourself in her room. The same home-taped “Sesame Street” plays the same two and a half hours over and over. This, an integral part of the same preservative tic impelling her to clutch to her chest all manner of unrelated objects: a door stop, a bean bag, a ball of foil, a coaster, a hairbrush, a subscription card, a winter scarf. When she bends to pick up yet another item — a shoe — invariably the lot of it gets away from her and you watch as the bundle spills to her feet. Dutifully, robotically, she gathers everything up again, dropping some, retrieving, dropping again like a bumbling vaudeville comic. You watch this fascinated, then impassioned, then with alarm (what … the hell … is she doing? ) then with dull acceptance. It is just the same scene from the same interminable clip on the Late Show from hell.
You doze. You wake, her hand on your face. Time to rewind the video. Surly with fatigue you shove her aside as the school bully would some playground twerp. Clothes all over the floor. She’s emptied her dresser, the closet. Inexplicable sculptures composed of sweaters pancaked with a book, then a stocking, a puzzle piece, an old moldy pretzel all constructed in mysterious, calculated intent. They dot the little room like totems, mushrooms, shrines amid a Japanese garden. You sit together as the VCR motor whines. Yoga on the TV — must be dawn. Beautiful bodies made of rubber on some tropical shore. Hey, they got nothing on your kid whose quadruple-jointed limbs can do Cirque du Soleil moves. An hour later your wife wakes you. (What do you do without a partner? How is this possible alone? Sex … maybe a quick tumble whenever the kid sleeps. Jumping each other like scamps. Going at it. Then you notice your child standing in your bedroom, waiting. Standing there like Carrie, shiny red as a candied apple, wet footprints, dogs licking her legs. Coitus interruptus anyone?) Sunlight streaming through the window. Is she down? you ask. Is she asleep? She’s in the shower, your wife responds. She got me up.
Daylight seems to click her down a few amps. She seems alert and ready for the day. A full circle has transpired and now, a familiar morning ritual. Calming, predictable. Breakfast. More pills. Hair. Teeth. Dressed. (Help your 15-year-old daughter on with her bra every morning and the female breast loses most of its mystery.) Get her on the bus. Now you must leave for work. Can’t take any more sick days. So sleepwalk through the motions. Hope your reserves kick in. Take an early lunch. Doze in the car for an hour. Throw down three cups of mud stewing since morning. Limp ’til 5:30. Collapse at home. Sleep through midnight. Again, your wife wakes you. Yeah, she’s still up, she informs you — napped two hours at school, cruising ever since. Your wife has clients tomorrow. She must crash. Time for your shift.
Men may be from Mars and women, indeed, Venus. But Planet Autism is where you reside now.
Doctors know everything. Doctors know squat. Hire an immunologist to pursue research your own internist finds superfluous. Ophthalmologists say don’t bother with glasses — they’ll never keep them on. Neurologists and psychiatrists prescribe truckloads of alchemy, names suggesting the moons orbiting this new world: zyprexa, naltrexone, clonidine, ranitidine, trazodone. Some indeed become the magic pill. The miracle drug. But getting there can resemble trial and error binges that would shrivel Hunter S. Thompson.
Ten years ago there were pediatricians who didn’t know autism from the Ottoman Empire. Now it’s the diagnosis du jour. An entire alternative health industry sprouts up around it. The usual suspects, some expert, or a blood chemist, or an Indonesian pharmacist places an ad in Prevention magazine, publishes a newsletter, hits the conferences, premieres a Web page and before long a thousand parents are in line for facilitated communication, blue-green algae, auditory integration therapy, the secretin hormone, whatever. Maybe it will actually work? At least for a couple of weeks, maybe a month. If the guinea pig is your kid she may demonstrate a promising response. Increased verbalization. Improved eye contact. Focused participation within some innocuous family activity. Then cruelly, predictably, her confused wiring, a permanent hard drive virus directs her biochemistry to countermand the positive results of the new substance, to develop — in effect, immunity to it. And so in time this latest, exciting remedy becomes no more than an asterisk in the snake oil file.
Western medicine is on the defensive. The U.S. Department of Education reports a 900 percent increase in cases of autism since 1992. On C-SPAN exhausted, terrified, furious parents vent their hopeless wrath during congressional hearings investigating claims that Big Pharma has ignored for years their belief that pediatric vaccinations precipitated their children’s acquisition of autism. Is the mercury-based preservative contained in the vaccines — Thimerosal — overwhelming the baby’s premature immune system? A generation ago kids received these shots in measured intervals. Today, some infants get a concentrated cocktail so as to be done with it.
Sensing the inevitable, bills exonerating vaccine manufacturers from liability snake their way through Congress. The most notorious of which, a rider — Mickey Finn’d at the 11th hour into the density of the Homeland Security Bill under cover of smallpox! — attempted to exempt Eli Lilly from any and all damages related to vaccine complaints. The provision’s author? Senate Majority Leader Dr. Bill Frist, R-Tenn. Uncovered by public watchdogs, it has since been removed from the bill.
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Bicker with, annoy, scream at, then finally threaten school administrators who want to dump your child in a room full of vegetables. Obtaining effective programs and services, you learn, is like squeezing water from wood. (What was the final straw that pushed Vermont Sen. Jim Jeffords out of the GOP? Bush’s refusal to increase federal funding for special education.) Fight like hell for the best curriculum, the best teachers. Otherwise, you’re just a rube swallowing input consisting of, “sign here.” Individualized education programs can be expensive. School districts will dig in their heels. Be reasonable, the administrators say. Fuck them. Demand everything. Let the band hold bake sales.
New Age pests, overdosed on media mythology, overhear you are the parent of an autistic child and, eyes aglow, pronounce, “Oh! And isn’t that just a blessing?” In Wisconsin, storefront fundamentalists suffocate an 8-year-old autistic boy to death while attempting to “exorcise” his strange behaviors. Evangelicals offer how it is the world’s collective sin that is to blame. Manifesting itself as suffering, wickedness, the mysterious afflictions that befall the innocent. Clueless neighbors, whose own children run wild, devoid of discipline, remark, “Yeah, our kids are just like her — ‘cept we got three of them.”
Years go by and your daughter has yet to intellectualize danger, fear, gravity, pain. At Costco you’ve lost her twice. There are terrifying seconds after you realize she is gone, gone! And she’d go off with anyone. Anyone holds out their hand she would take it. But there she is at the video bins … Later she puts her hand through a plate glass window. You don’t notice until, filling the hummingbird feeder, you glance at her shredded arm. Waiting in the E.R. presents another nightmare, a treadmill of Kafkaesque absurdities. Like your kid is going to sit in a chair for three or four or five hours. Right. Must keep moving. So you walk with her without rest. Gliding together in sweeping, repetitive loops throughout the waiting room, holding her arm upward as much as possible. Still, she manages to lunge for stranger’s drinks, hoot and scream inappropriately, bolt down hallways. She is atomic. She is the nucleus around which her positively charged parents rotate — or deflect from — in collision. Finally, the triage nurse buzzes you in. “Oh, autistic? You should have said something. I would have bumped you.” Insurance? Yeah, but for godsakes don’t mention autism. HMO’s won’t cover it. Taking her vitals is akin to restraining a wild animal. Half a dozen nurses, two paramedics and some beefy security guys must hold her down 40 minutes before the knockout drops relax her. All this for eight stitches.
Occasionally, guardian angels materialize. A young woman who bonds with your child like some mysterious winged sibling. But eventually they must leave, to pursue a career in special education or guide rafters in Wyoming. Departments of developmental disabilities, in their infinite wisdom, offer alternatives under the auspices of placement vendors who contract with lowest bidder employment agencies. Minimum wage high school grads show up at your door, thick as a brick, snapping gum, caked in makeup, don’t know autism from order-of-fries-with-that? So you train them. It’s either that or quit your job so somebody is home after school. Well, the new gal is finally enough along that you figure she can handle taking her charge out in public. The cops explain later that your daughter caused such a scene in the parking lot of Target somebody thought a kidnapping was in progress. Her new aide, useless, tugging on the screaming preteen, became hysterical when the police arrived. The sheriff’s helicopter, whirling figure eights, exacerbates everything. Your daughter, you are told, was unresponsive to police commands, resisted contact. She was handcuffed after attempting to bite one of the officers.
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In the apocalypse scenario, your nightmare — infrastructure cleaved, roads clogged, E.R.’s overwhelmed — your kid drags down the entire family. As does the diabetic kid, the wheelchair kid. Does someone stay behind so that the family may survive? Or does the family reject this, insisting the unit stay whole while around them entropy multiplies?
In August 2002, Delfin Bartolome of Laguna Niguel, Calif., shot to death his 27-year-old autistic son, Dale, and then himself. You must acknowledge that you know this man. You have seen him in your coffee, the windshield, the mirror. A father approaching 60. The young adult under his roof knocking him down reaching for the cereal. A succession of in-home aides quit. The mother, fighting her own infirmities, avoids her son. Placement in group homes refused.
Siblings of the grown disabled child still living with the parents say, I got my own problems. The father sees his son in 10 years locked away somewhere. Forgotten. No advocate. No family. No warmth of touch. Who will care what his pleasures are? Will someone ever take him rafting down the Bitterroot again? The father sees his son wandering hallways the rest of his life. Soiled pajamas. Decaying teeth. His only human contact a brusque toweling down after a lukewarm shower.
For most people, autism, like abstract art or Alzheimer’s or astrophysics, remains startling and unfathomable. For parents, the raising of children with severe disabilities confirms the indifference of nature, the disorder of the universe. Any potential, any ambition they once may have entertained for themselves has forever been compromised. Together with their remarkable, impossible children they make a life on a different planet. Where the gravity is very strong. And the climate rarely changes.