I was 12 when my cousins came to visit in August 1992: old enough to realize something was wrong with my 3-year-old brother. The other six kids in our apartment that week—me, my sister, and my four cousins—didn’t flap our hands in front of our faces for hours or say “Eeeee” instead of words. Until then I’d convinced myself that my brother was just “slow,” like my parents said, and that, like my dad, he’d be a late talker. But my cousins looked at my brother as if he had six heads, and by the middle of their visit, I did too. He wouldn’t be diagnosed with autism for another two years because there weren’t many doctors in our area who knew what it was. And even after he was diagnosed, we spent weekends driving the hour and a half between Milwaukee and our hometown of Madison, Wisconsin, in search of doctors who knew how to treat it.
My parents’ search for treatment, and possibly a cure, for my brother sent us not just from city to city but through theory after theory. They eliminated sugar, dairy, and gluten from my brother’s diet and added alternative “vitamins” likekava kava and valerian in an attempt to get him to sit still for more than a second or two. After I tried his vitamins out of curiosity I understood why he grimaced as he swallowed them: They tasted like a sour mix of grass and dirt.
Music therapy, where my brother wore a special set of headphones so he could listen to what sounded like static for an hour a day, was supposed to cut down on his hand-flapping and help him talk more. While my brother’s behavioral therapists taught him some language and the ability to follow basic commands like “sit down,” “hands in lap,” and “come here,” I’m not sure what any of the rest of these treatment methods accomplished. But the community my parents built—of autism doctors, therapists, and fellow parents of autistic kids—seemed to “discover” a treatment or “cure” every five minutes, even if most of them were discredited in the sixth minute. In the late 90s, this community turned against vaccines.
Andrew Wakefield famously “discovered” a link between the MMR (measles-mumps-rubella) vaccine and autism in 1998 that has since been discredited, but from 1998 until 2004, when 10 of the paper’s 12 authors retracted the study, his findings were, at least in some circles, considered credible science. My family and I were thrilled about Wakefield’s “discovery.” If vaccines were the problem, autism could be prevented, even if it couldn’t be cured. I wanted to have kids someday and I knew that autism tended to run in families. So I was thrilled to think that if I didn’t give my future kid an MMR shot, he or she would never develop autism. Wakefield only discussed MMR, but I grew suspicious of all vaccines. If one vaccine was dangerous, weren’t they all?
Wakefield lost his medical license in 2010 when Britain’s medical-licensing council found that his study was dishonest and that he’d mistreated developmentally challenged children in the course of his research.
Yet instead of feeling relieved that I could rule vaccines out as a potential cause of autism, I felt cheated. I couldn’t accept the truth: In the 15 years since my brother’s diagnosis, no one had figured out what causes autism, so there was nothing I could do to prevent having an autistic child. I held on to my opposition, figuring I should avoid vaccinating my future kid “just in case.” I wanted to believe that I could control whether my future kid would be autistic or not. I had witnessed my parents, their friends with autistic kids, and my brother’s doctors navigate a labyrinth of shifting medical-insurance coverages and autism-treatment fads, hoping to improve their kids’ social and language skills enough to let them hold a job or live in a group home. I knew I didn’t want to have a kid who couldn’t talk if I could avoid it.
I married a man who was firmly pro-vaccine. He understood my fear of giving birth to an autistic kid, but thought my anti-vaccine position was nuts. Every time we argued about vaccination I decided my gut feelings and need for control outweighed the studies and news articles he cited to convince me vaccines didn’t cause autism. I figured I could put off a final decision on vaccination until we actually had a child.
I had an honest, soul-baring chat with my doctor about my family’s autism history, which by then included my second brother, who was diagnosed with autism in 2004. She’d answered all my other questions calmly, so I was surprised at how passionate she became when she told me that there was no link between vaccines and autism and that I should get the whooping-cough booster shot and vaccinate my baby after he was born. I’d grown fond of my doctor after months of appointments and trusted her advice. And I couldn’t stop picturing those dead babies. I decided to get the whooping cough booster shot. And to vaccinate my child.
I now have a 16-month-old boy who has received all his shots and is physically and cognitively normal. He’s only had two colds in his short life and I don’t have to worry about this year’s California measles outbreak, since he had his MMR shot a few months ago. As a parent I will always have to sort through facts and face my fears to try to make the best decisions for my son. But I can’t protect him by making parenting decisions that are based on false, dangerous information. I’m ashamed that it took me 15 years to realize that pretending there was a connection between vaccines and autism didn’t let me control whether my son would be autistic or not. It just put him in another kind of danger—a preventable kind.