Ann Bauer, mother of an autistic son who died at 28, writes a long, heartbreaking piece about how unquestioning obedience to experts and their well-meaning hypotheses can ruin lives. A snippet, and you need to read it all.
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.
Accountability is entirely absent from the assessment of our educated "gurus," the bureaucracies that enable them and their joint records of failure. Once a credentialed hero is raised on a pedestal, attempts to point out all manner of quackery--and worse--are ignored or shouted down.
This is why my sympathy for skepticism and good people who buy into conspiracy theories never vanishes entirely. Given the bad examples of our institutions, it's understandable why people would buy in.