It was 3 a.m. and I was on the couch under a blanket with my dying laptop, alone in the silence of a sleeping house. That’s when I Googled “autistic catatonia” and hit the mother lode. There were dozens of stories, coming from countries all over the world, and each one described in wretched detail the previous year of my son’s life: the slowing, the disintegration, the delusions and insomnia and explosive anger.
In addition, they all warned—each and every journal article, white paper and scientific treatise—that the one thing practitioners should never do is prescribe antipsychotic medications, such as Abilify and Geodon, because they will make the symptoms of autistic catatonia much worse. And it might cause permanent damage.
The third thing I found was a web site that described neuroleptic malignant syndrome, a slow poisoning by prescription that lasts (and this is the part that caught my attention) even after the drug is stopped.
Finally, believe it or not, we’ve reached the hopeful, lucky part. Only I didn’t know that yet.
I was crazed. Throughout the early morning hours, I e-mailed people. The retired doctor from Stony Brook, N.Y., who had authored the original work on autistic catatonia; a therapist from the Netherlands who claimed to have a new method for treating it; researchers at our local university. Then I went to bed and slept fitfully for exactly one hour and forty minutes.
When I awoke, at 7:30, my email box was full. The most helpful response came from the gentleman once of Stony Brook, now professor emeritus of both psychiatry and neurology, a genuine mensch, living on Long Island with his wife. “Dear Mrs. Bauer,” he’d written at 6:48 a.m., “I know of no one in Minneapolis who understands the connection between autism and catatonia. But the clinicians at Mayo are very knowledgeable. Would you like me to make a referral?” Other messages simply advised me to seek medical attention for my son immediately, to flush the medications from his system. “It sounds as if your son is, indeed, suffering from autistic catatonia,” one doctor wrote. “But I believe most of the symptoms you describe are related to the inappropriate use of neuroleptics.”
How lucky can you get? Not only did the world’s top expert reach across electronic airspace to help diagnose and refer a stranger, but we happen to live just one hour and fifteen minutes from Mayo Clinic, one of three places on earth where autistic catatonia is truly understood. And it’s that rare healthcare organization where doctors are not allowed to take kickbacks from the drug companies. But I’m getting ahead of myself.
On April 30, my ex-husband and his wife put our son in the back seat of their car and drove like hell the seventy-two miles to Rochester, Minn. Exhausted after the ninety-minute trip, the three-hour wait to check in, the half-year of tracking a drug-addled boy, they walked across the street to a hotel room after checking him into the hospital and had their first uninterrupted night’s sleep in weeks.
We all did. Secure in the knowledge that the boy who’d been wandering for nearly two years was finally locked up and safe, my husband and I, too, slept the way starving people eat.
Then we drove to Rochester to meet with the nine practitioners who’d been called in to assess our son. It was an interesting case, they told us—and instructive. Within three days, they’d performed a series of medical tests and evaluations, determining that our son was neither schizophrenic nor psychotic. He was autistic, exhausted, improperly medicated, borderline diabetic, and simply stuck. It would take them perhaps a month to detox his body of all the drugs and treat the underlying catatonia that had dogged him for more than a year.
“This occurs in about fifteen percent of all young people with autism,” the team lead told us. “We don’t know yet why it happens, but we can treat it.”
And then they did. Magically, it seemed. On the morning after they began their regimen—a combination of therapies that they orchestrated like a carefully choreographed dance—our son awoke and stretched, clear-eyed, to ask us if we’d like to play a game of hearts. And after a slightly shaky start, he shot the moon, gathering all the tricks with controlled sweeps of his right hand, flashing us a shy but satisfied smile.
Five days later, the New York Times ran a front-page story about psychiatrists in Minnesota who were collecting money from drug manufacturers for prescribing atypical antipsychotics, including Abilify and Geodon. According to the Times, “Atypicals have side effects that are not easy to predict in any one patient. These include rapid weight gain and blood sugar problems, both risk factors for diabetes; disfiguring tics, dystonia, and in rare cases heart attacks and sudden death in the elderly.”
Side effects like our son’s—almost certainly caused by a unique combination of the drugs and autistic catatonia—were not explicitly cited. These facts, however, were:
“In Minnesota, psychiatrists collected more money from drug makers from 2000 to 2005 than doctors in any other specialty,” the Times reported. “Total payments to individual psychiatrists ranged from fifty-one dollars to more than $689,000, with a median of $1,750. Since the records are incomplete, these figures probably underestimate doctors’ actual incomes.”
By this time, we four parents had resumed our life in Minneapolis and were trading visiting days.
After work on the night the Times article came out, my husband and I got on his motorcycle, puttered through rush hour traffic, then sped down Highway 52, arriving after the dinner hour to find our son sitting at a table, playing chess with a nurse. She was hunched over the board, muttering; he was lounging in his chair, leaning back to watch television while he waited for her to make her move. There was a small crowd gathered around watching.
“He’s killing her!” a patient named Richard crowed. “He beat her the first time in seven moves and the second time in four.”
The nurse raised her head and grimaced.
“Did you tell her you used to be a tournament player?” I asked, bending to kiss my son’s woolly hair.
“Oh no, I guess I forgot,” he said vaguely and slid his eyes at me in a way I recognized from years ago, that quirky boy from long ago.
After the visit, riding home through rolling farmland and a scarlet sunset that was cracked with gold, I counted the ways we were lucky. The doctors at Mayo had assured us that our son’s prognosis was very good: Even after the treatment was done, he probably would continue to improve and regain most of the ground he’d lost by summer’s end. My son’s supervisor—a wise and gentle woman who’d never flinched, even when he was at his craziest—had called to say she was holding his job for him, maintaining his health insurance, and hoping for his swift recovery. My husband and my former husband’s new wife had parented stalwartly through the very worst of times.
And there was that one moment, as we were leaving, when my son had put his hand on my arm and told me he missed us. He also missed going to Starbucks and walking in the sunshine and he wanted, more than anything, to go outside for just an hour or so. “You could just lead me out of here,” he’d said, his face sober as a Lutheran minister’s. “If I walked past the desk with you, maybe they wouldn’t even see.” I looked straight up at him, this bearded man who, at two hundred and fifty pounds is exactly twice my size, and started to tell him I thought the nurses probably would notice. But he reached out and touched my arm, gently, wrapping his fingers all the way around. “I would only go out for a little while, you know. And later, I could come back. Don’t worry, Mom. I can find my way.”
Ann Bauer is a regular contributor to Salon.com and a food writer for The Rake. This story was originally published on Salon in May.
For food writing by Ann Bauer, please see our Eaters’ Digest section.
For more on Ann Bauer’s personal experience with her son’s autism, see "The Body Electric," in which she explores electroshock therapy as a possible treatment for her son’s condition.