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.