I Have Been Through This Before

Austrians of the time, dabbled in psychoanalysis and read a bit of Freud. His wife had once cared for an emotionally disturbed child in their home. When he arrived as a refugee in the U.S. he used these random details to remake himself as an expert in human behavior. A small man with a striking Viennese accent and manner, he believed he had valuable psychological insights from the 11 months he’d spent inside Dachau and Buchenwald.

Back in ’38, when Bettelheim was imprisoned, these were primarily work camps where prisoners were divided, stripped of their possessions, then beaten and herded like animals by the guards. Bettelheim noted that the men most damaged by alienation and violence, the ones who gave up hope, had similar affect: They avoided eye contact, rocked and muttered, and gazed at distant objects. He felt he had witnessed what it takes to break a person’s mind.

Bettelheim’s first job in the United States was as research assistant at the University of Chicago, studying high school art curricula. He divorced his wife (who had also emigrated) and taught briefly. In 1943, he published a paper titled “Individual and Mass Behavior in Extreme Situations,” claiming to have studied more than 1,500 concentration camp prisoners. Legendary General and future President Dwight D. Eisenhower praised the work.

Overnight, Bettelheim became a “doctor” and a star.

On the strength of that paper, his [false] claim to have worked with Sigmund Freud, and his status as an intellectual and refugee from Hitler’s Germany, Bettelheim was made full professor of psychology and director of the Sonia Shankman Orthogenic School for emotionally disturbed children at the University of Chicago in 1944.

Once established at the school, he won a grant from the Ford Foundation to start a program specifically for autistic children. Parents from around the country sought his help for their children who were mute, withdrawn, unable to follow directions, prone to “stimming” (gazing at an object or blinking rapidly into light), self-harming, or failing to toilet train.

In the mid-’50s Bettelheim developed a new theory of autism, based on his 1943 paper and the passing remark of a researcher named Leo Kanner who said autistic children “never defrost”: the “refrigerator mother.”

Bad parenting—like imprisonment in a Nazi work camp—was an “extreme situation,” Bettelheim said. He characterized the mothers of children in his program as cold, distant, abusive and uncaring, like domestic SS guards. Though no studies were done to back up this hypothesis, his theory that rejecting mothers cause autism became the accepted science of the time.

In his 1967 book The Empty Fortress, Bettelheim wrote, “Infants, if totally deserted by humans before they have developed enough to shift for themselves, will die. And if their physical care is enough for survival but they are deserted emotionally, or are pushed beyond their capacity to cope, they will become autistic.”

Dr. Bettelheim enjoyed decades as a media darling, appearing on television—he was a regular on The Dick Cavett Show—and serving as top expert for newspapers such as The New York Times and The Washington Post, which credited him with “originating many of the techniques and principles of modern child psychiatry.” Woody Allen gave the pop psychiatrist a cameo, as himself, in the film Zelig. Commonweal magazine published an article titled “The Holy Work of Bruno Bettelheim.” He wrote a series of world-famous bestselling books.

The refrigerator-mother theory of autism became gospel, not just among psychiatrists but in the zeitgeist. It made sense and was easy to grasp. Better, it turned a mysterious and heartbreaking condition into a simple problem of who was to blame. People rallied behind the idea that cold mothers caused autism because it gave them comfort. Mothers whose children developed normally knew it was because they were “good.” Fathers and other relatives of autistic children were off the hook.

Even desperate “bad” mothers embraced the idea, believing that if they could fix themselves their children would be cured. Finally, an answer: They needed to sign up for intense psychotherapy and send their autistic children to live with other families or in residential programs. Some mothers were advised to re-home their healthy children as well, lest their “refrigerator” qualities leak over and spoil another young mind. Many complied.

Occasionally families would reject the diagnosis and their children would be taken by force. Reports were made, psychiatric teams mobilized. They showed up at the homes of autistic children, packed their bags and removed them, while guards held off the screaming, protesting mothers who’d been deemed unsuitable. Bettelheim called this process “parentectomy,” a sad but necessary practice that would help autistic kids be cured. Many were taken to the Orthogenic School he ran, where they stayed for up to a dozen years.

It wasn’t until 1990—after Bettelheim’s death by suicide at 86—that residents and staff from the school began talking about his rages, name calling, constant lying, and abuse.

“I would characterize the atmosphere at the Orthogenic School, at that time, as the beginnings of a cult, with Dr. B. as the cult leader,” wrote a former counselor, W.B., in a letter to the Chicago Reader in July 1990.

But by that point, almost 50 years of damage had been done, during which any clinician who came up with a different diagnosis or questioned Bettelheim’s practices suffered immediate and devastating professional consequences. “In the Orthogenic School,” psychiatrist Richard Kaufman told the Chicago Tribune. “Bettelheim’s mind supplanted your own.”

I was 23 when Bruno Bettelheim—a man I’d never heard of—took his own life. The following year, in 1991, my 3 1/2-year-old son, Andrew, lost language. One day he could talk; the next he was yodeling in a strange high-pitched voice, flicking the lights on and off, and staring for hours as he spun a single wheel on a toy car.

My then-husband and I were too young and poor to have a child—much less two. Our 1-year-old had respiratory problems and asthma, which consumed time and money. We were on the edge, barely able to pay our bills and buy macaroni and cheese. It was just dawning on me that I’d married a dreamy, quixotic guy who drank when he was troubled and couldn’t hold down a job.

That’s what county social workers saw when they were called to assess Andrew, following his meltdown at our public library. A tiny house, a fraying marriage, two depleted parents in cheap clothes. It was winter on the Iron Range, where advances in psychology took some time to travel. The experts—a stoic North Country man-and-woman team—decided we were the cause.

They questioned us separately and casually brought up the idea of temporary foster care. We protested and were told we could keep the boys but only if we submitted to frequent visits and attended parenting classes twice weekly, which we gladly did.

While we were being taught how to impose consequences and establish routine, Andrew and his brother were taken to a child care room where teachers helped them sing, play, and socialize. At first Andrew seemed to improve, brightening and even talking a bit, but then he regressed again, a pattern we’d see repeat on a loop for the rest of his life.

When an older relative came to visit us in spring she took one look at my 4-year-old sitting in the corner, staring at his hand. “You’ve ruined that beautiful child,” she said, her face tense with fury. “You and your careless life. Ruined him. Aren’t you ashamed?”

We eventually moved to Minneapolis, where treatments were supposedly more advanced. At 5, Andrew was diagnosed with autism and enrolled in a program that involved rocking boards, chewy toys and roughing his skin with surgical brushes three times a day.

We blamed ourselves for our son’s problems and most of the new theories did, too. His autism was because we’d had him vaccinated. Because we fed him wheat or dairy or corn. Because we hadn’t employed a team of workers to have constant “floor time” with him (the so-called Son Rise cure) or apply behavioral techniques according to the Lovaas method, beloved not only by late ’90s autism parents but also by conversion therapy folks.

Each new wave was certain: The approaches to autism that had come before were barbaric and uninformed, but this most recent breakthrough was the one clear truth. Science had spoken. Over and over for a dozen years.

We were heartbroken each time a treatment failed—and guilty because without fail, someone would insist we hadn’t tried hard enough. Sure, we’d gone gluten-free, but had we cleansed with hyperbaric oxygen? Behavioral training worked, but only if you did it 18 hours a day. Why hadn’t we taken a second mortgage and flown to the Catskills for a workshop at the Son-Rise Institute?

Just shy of his 36th birthday my then-husband gave in and began drinking in earnest. He lost his job and grew dark and silent. One day he apologized, hugged us all, got in his truck, and drove away.

Now single, I rode the waves of hope and despair alone. There were periods of clarity when I was sure Andrew was breaking through. Adolescence was oddly hopeful; he spoke haltingly but started playing tournament chess and riding a bike. It seemed hormones might bring him out of “childhood” autism—as they do, miraculously, in a tiny number of boys.

Years passed, during which my sons grew closer and more alike. Once someone asked me, “Which is the autistic one?” But along with better engagement, social skills, and speech, Andrew had chronic anxiety. When he started high school, a doctor friend at the university where I was teaching suggested Andrew be “seen.”

Around the same time there was a surge in ads for antidepressants on TV. Psychiatrists quit asking questions and plumbing the unconscious mind, becoming like tea leaf readers in white coats who studied blood test results but never looked their patients in the eyes. I took my son to such a person, who prescribed Lexapro.

This was the moment Bettelheim’s work was entirely spurned by a new group of experts who neatly whipsawed the other direction. They changed positions but held onto the religiosity. Nature was in, nurture was out. Brain chemistry became the only thing that mattered. Everything we’d done during Andrew’s childhood—talk therapy, sensory integration, cross-patterning, behavior training, biofeedback—they rejected as quackery.

Andrew responded oddly to Lexapro, as he did to so many things, becoming obsessive and manic, wandering all night. The boy’s father had resurfaced with a new wife who happened to work for a pharmaceutical company. I, too, was recently remarried. The four of us met to discuss the situation and I was relieved to have help for the first time in years.

But soon we were at odds: My husband, John, and I wanted to take Andrew off the Lexapro; but my ex and his wife insisted he really needed something stronger. When we finally saw the autism specialist we’d spent six months waitlisted for, he was entirely on their side.

“Your son is suffering from a neurological disease and I won’t permit you to withhold medication that will help him,” the doctor said, looming just like those North Country social workers. “I would call that abuse.”

He put Andrew on Abilify, an “atypical” anti-psychotic that ran commercials during the news. John and I asked for a trial of something milder, or more tested, but the psychiatrist insisted older therapies were inferior and wouldn’t work. Weeks later my son turned 18 and I lost the power to control his medical decisions. I watched as the doctor and my ex-husband, both large imposing men, insisted he take the drug.

It’s possible Andrew developed psychosis at exactly the same time he began taking psychiatric drugs, that my ex and the doctor were right and I was wrong. It’s also possible that his brain was fragile and the drugs that were loaded into it (over time, his doctor added Risperdal and a little Depakote) melted his circuitry, causing decompensation.

But each time I raised the question, I was lectured. Andrew should have been medicated earlier; I’d been negligent; the doctors were playing catch-up. It would take at least three months to see benefits, possibly six. I must not think of taking him off because withdrawal was dangerous. Two doctors threatened to report me for mistreatment of a vulnerable adult if I tried. I wrote an article for a local magazine telling our story and questioning the widespread use of anti-psychotics. A University of Minnesota psychiatrist, director of autism services, submitted a scathing rebuttal calling me an anti-science nut.

Meanwhile, Andrew went from a shy, smart, autistic teenager to a stuporous man who gained 100 pounds and erupted in rage. My ex and his wife faded away around the time a county worker told a judge our son was out of control and the state of Minnesota mandated electroshock (this was 2011, and common practice). John and I sued and ended up with a court-appointed guardian who was granted all powers of control over Andrew’s life and later was indicted for doping his clients and stealing from them.

Again we went to court and this time we won. In 2014, John became Andrew’s legal guardian and began the process of detoxing him from the most dangerous medications. For two years we lived quietly, Andrew in an apartment complex for adults with autism, us in a small house we planned to will to him and his brother, who had asked to be successor guardian. Every Sunday, we had dinner together and took a walk.

Andrew had grown into himself, resigned and weary. No longer angry, he lived in easy silence and aged precipitously, appearing decades older. When we went out, he and I, people assumed he was my husband—this tall, grave, balding man.

On a dazzling Friday morning in November 2016, Andrew was found dead on the floor of his living room. John got the call and took me to a park near our house, awash with crisp red and orange leaves, to tell me the news. Fall has filled me with dread ever since.

My son was 28 years old when he died. An autopsy was performed but no official cause of death was found. Traditional methods of suicide were ruled out. Yet he’d told me at our last dinner that there was no happiness for him in this world—seeming clearer of mind than he had in years. He’d wiped his phone and computer and erased his music from Spotify.

When we cleaned out his apartment there was a pile of foil-wrapped pharmaceuticals in the back of a drawer. But the coroner’s report showed low/normal levels of only two drugs in his blood—neither withdrawal nor overdose. My personal explanation is that he was tired of being controlled by the fickle czars of autism and he was just done.

The time between late 2016 and 2019 is mostly lost to me. Grief, it turns out, doesn’t feel like sadness. It’s more like terror, being chased through oily blackness. My husband, younger son and I isolated. We drank. We drove, looking for Andrew. He’d loved mountains: South Dakota, Colorado, Oregon. We swore we felt him in the trees.

We’d started to function again, slowly, by late ’19. In January ’20 we traveled to Bellevue, Washington, for a conference where John was speaking. I fell ill soon after with a fever and breathless cough I couldn’t shake for six weeks. This friend of ours—a corporate lawyer with business in China—raised an eyebrow and told us a pandemic was coming. All around there was tension, something uncontrolled and wicked in the air.

John is an internet security expert with a background in mathematics. He’ll often talk about the “shape” of a problem. This is its outline, its gestalt. He envisions it like dots on a chart, or waves on a graph. I see holographic images—the shape of an ambitious refugee, white coats and flimflam men, glimmering under the figures we see today. In March, April, May, familiar shapes began to emerge.

Suddenly there emerged a cadre of pandemic experts who recommended—then quickly required—extreme and unprecedented things. People shouldn’t see their parents, visit friends, hold funerals or hug. We could never shake hands again. Wearing masks was useless! We MUST mask, both indoors and out. There were hotlines set up in many cities—including mine—for citizens to report their neighbors who did not comply. Police were sent to break up a Jewish funeral in New York City.

Day after day, media rained down information about who was to blame. Millennials, spring breakers, Southerners, motorcyclists. Scientists who proposed different theories were muffled, derided, sidelined. They were deemed dangerous, their ideas “misinformation.” To question was sacrilege.

I had lived through all of this before.

In the last days of May 2020, police murdered a man in my city, setting off worldwide mass protests. But these gatherings were proclaimed to be different, sanctified. A service was held—indoors, packed with people including an unmasked U.S. senator and our Minnesota governor who’d pledged to send the National Guard to break up anyone else’s funeral. They sang and gripped hands. This, too, was blessed by those in charge.

Just as they had all the years of my son’s life, recommendations changed at a furious pace, echoed by not only public health officials but their inner circle of a tech giant, a nutritionist, a sociologist, a health care entrepreneur, which now enjoyed the support of both the U.S. government and the monopoly tech platforms that control what we are allowed to see and read. The experts rocketed beyond the reach of scientific gravity into an evidence-free atmosphere where every passing theory became both law and truth.

The year of COVID continued with a drumbeat of warnings nationwide. Sanitize your mail with bleach and a UV light. Don’t wear a mask; you must wear a mask. Buy a pulse oximeter. Stock up on Tylenol, vitamin D, Pepcid. Form a pod. Get an air filter. Whisper so you don’t spit. Stand six feet from others—no, 10. Wear gloves. Put on goggles because the virus can get in through your eyes. Don’t pet the dog. Keep your teenager in the garage. Isolate a sick toddler in your basement with a bell. Wear two masks! Stay out of restaurants, nail salons, gyms. Open the windows. Close the schools.

Finally, the vaccines came and they seemed, at first, to be a miracle. But still there were certain things you weren’t allowed to discuss, like side effects, transmissibility, and natural immunity. The shots were immaculate and all-powerful! Then suddenly … they were not. Vaccinations were undone by the unvaccinated; they couldn’t save the faithful because of the sinful. And the drug alone wasn’t enough. True believers wore a mask as well and those who did not were causing the cure to fail.

Whatever the experts said on television became reality, became “science.” Meanwhile people died and died and died and just as the ongoing tragedy of autism of a child was somehow the mother’s fault, over and over again, doctors and officials blamed their audience of 3 billion for the disease. The more the cures failed, the greater the fault of the public. The flaw was never in the remedy, but in those who failed to “behave” and thereby brought the plague upon themselves.

After schools were closed and our city shut down in March of ’20, I lay awake nights imagining all the children like my son who were mute, sensitive, bound to routine, friendless, in desperate need of services and incapable of learning on Zoom. The adults with already-isolating disabilities whose programs and activities, supported jobs and social work visits were canceled. The ones who were returned with COVID to their group homes and left to die. Occasionally I’d panic, my heart pounding, and my husband would awaken to comfort me.

More than once he actually said the words, “It’s OK, you can sleep. Andrew’s gone.”

But I was haunted, driven, obsessed the way my child with autism had been. It was so clear to me that politicians and public health were flailing and doing harm. With every new order and unprecedented decree, I saw the shape of that army of autism experts. I questioned everything—school closures, lockdowns, masks—talking compulsively about the inevitable consequences, the ways we were breaking people. Fully half of my friends, people who sat with me in the hours after my son’s death, quit speaking to me in 2020. My editors, clients, and work colleagues simply disappeared.

Of the friends who remain, most are sympathetic but also loyal to the COVID narrative, and therefore frustrated by my stance. They’ve suggested that I don’t trust today’s experts because I’m so broken by my past. And I cannot swear this isn’t true. But are today’s experts provably better than past experts? Why should that be? Perhaps I learned from experiences that other people were fortunate enough not to have—until now.

In the end, what I believe doesn’t really matter. History will out. Ten or 15 or 25 years from now there will a reckoning, deep research, a spate of biographies and memoirs from the people who spent 2020-21 under the sway of gurus. News media that trumpeted their wisdom and methods will issue brisk, researched, documentary-style reports. People will swarm out of the shadows to claim they didn’t really believe the experts embodied science and were secretly resisting all along; even those who preached their gospel and strong-armed the public’s obedience will insist they actually did not.