In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
Wrangling three children with autism consumed Dana Paduchowski’s days in a chaotic swirl, her weeks dissolving into a blur of routines and meltdowns. When the house finally quieted at night, the mother would stay awake for hours scouring the internet for a magic treatment that didn’t exist.
Instead of finding answers, Paduchowski said, she constantly stumbled into expensive “rabbit holes of broken promises.”
Over the past few years, Paduchowski estimates, she and her husband have spent at least $30,000 on unproven alternative treatments for her children: An intravenous therapy to remove heavy metals from her son’s body. A clinic with hyperbaric oxygen chambers. Supplements, new diets and naturopathic doctors. While some helped in small ways, others made no difference. In a few cases, she said, her children became “sick and pale” or regressed.
“I just thought, ‘Oh, we’re gonna get this test, and then we’re gonna get results, and then we’re going to fix this one thing and then he’s going to talk and break out of his autism shell,’” she said on a recent afternoon standing in her kitchen, as 15-year-old Caleb, her oldest, jumped and flapped his arms to an episode of “Sesame Street” blaring on the TV.
“But none of that has ever happened,” she said.
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.Fringe treatments for autism have long tempted some individuals and families struggling with the disorder, which is a neurodevelopmental condition that presents itself differently in each person. There’s little evidence of effectiveness for common alternatives to behavioral therapy that are widely cited on the internet, according to a study this year in the Nature Human Behavior journal. Still, the study found, up to 90 percent of autistic individuals reported having tried some type of alternative treatment at least once in their lifetime.
