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Just a day or two ago, The Boston Globe reported an outbreak of measles (https://www.bostonglobe.com/metro/2018/08/23/measles-case-confirmed-mas…) in Boston and some surrounding areas. I found myself shaking my head, frowning. What is it with those people, I thought, momentarily forgetting that twenty years ago I had been one of those people – anti-vaxers -- for a little while. I used to be terrified that vaccines might have caused my oldest son Nat’s severe autism. He struggled on a daily basis, with his frustration at the world’s confusing ways, his sensory deficits, his clueless parents. But back then a lot of my sympathy, I’ll admit, was for myself and my struggles with Nat's autism. And I needed to find something to blame.
In 1998, when I was pregnant with Ben, my third son, I determined that it would not happen again. First, while pregnant, I often prayed to God, “Please don’t let him be autistic.” I'm not proud of that. Then, when Ben was born, I watched for autism almost constantly. Because of Nat, we had learned that genetically our chances were one in 20. (And yet my second born son, Max, did not have autism.)
It seemed like all around me children were being diagnosed with autism. What was causing this, I wondered, along with so many other parents. How could we know that it was our society’s newly sharpened awareness and knowledge of autism that caused the frequency to appear to jump out of control. Thanks to some exceptional research by journalist Steve Silberman, (https://www.nytimes.com/2015/08/23/books/review/neurotribes-by-steve-si…) and John Donvan and Karen Zucker (https://www.theguardian.com/books/2016/jan/17/different-key-story-autis…) as well as the scholar Eustacia Cutler, who is also the mother of Dr. Temple Grandin (https://autismawarenesscentre.com/shop/parenting-family-1/a-thorn-in-my…) we now know that the autism population has always been here, in many different permutations.
But I didn’t know that back then. I started researching the new “autism tsunami” and I stumbled across the 1998 Lancet study (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)1109…) that connected the dots between measles, leaky gut and autism. Dr. Andrew Wakefield’s findings indicated that giving your children the measles, mumps and rubella vaccine could cause autism.
Wakefield’s theory seemed to make so much sense. I imagined how immune-compromised baby bloodstreams could become filled with what the doctor had called “opiate-like substances,” that caused the terrible autistic behavior of preferred isolation, spaciness and aggression. This felt so true, it found a home in my sore soul. It gratified my instinctive feelings that autism was unfair for what it did to kids, and that we as a society are so careless with our medications! Acquaintances continued to tell me the horror stories of how their children abruptly regressed after having the MMR vaccine. One friend explained to me the logic of her beliefs: that pharmaceutical companies sometimes fund studies and have relationships with physicians. How maybe you were told this pro-vaccine stuff so that you wouldn’t hold your doctor responsible for your child’s autism. How we should all remember how fallible doctors could be—so many of we autism parents had been told from day one that we were being oversensitive to our infant’s unusual behaviors, only to find out later that they did indeed have autism. Perhaps the parent is always right, these parents would imply.
But I loved and trusted my pediatrician. So I felt I had to do more digging, and discovered the maelstrom that had followed Wakefield’s study. His "research" had been debunked. More studies were done. None established a connection between MMR and autism. And yet still, no one knew exactly what did cause autism.
Ultimately, I began to be convinced by science—however compelling the anti-vaccine stories. Even so, fear and superstition are powerful motivators, so when it came time to vaccinate Ben, I hedged. I begged my pediatrician to delay his vaccines. Reluctantly, she agreed. And so we waited to give Ben the MMR until it “felt” safer. We had nothing to back this up, and I quickly regretted what I had done. Measles can be a deadly disease, after all!
I know now that we had possibly endangered his life by exposing him, a tiny vulnerable child, to measles for so long. We should never have done that. But I understand why the younger me did.
So, yes, I can understand where the anti-vaccine contingent is coming from. But I no longer give their beliefs credence. I urge people to get vaccinated. If we lose that herd immunity, (https://www.vaccines.gov/basics/work/protection/index.html) we risk measles epidemics.
Like autism, the ways of human beings are subtle, contradictory and complex. It’s hard to call into question the logic of a terrified parent. I understand this firsthand. Still, I know that Nat’s shots did not cause his autism. And the strongest belief, the most convincing instinct I have tells me that if my former vaccine doubts had caused Ben to die of measles, I would have gladly wished autism on him instead. The truth is, having autism has made Nat a strong, competent person, able to cope masterfully with great confusion and discomfort. Now 28 and about to move into an apartment with two friends, Nat volunteers at Meals on Wheels, and even sings in a rock band. (https://www.bostonglobe.com/magazine/2017/12/08/age-joyful-breakthrough…)
You don’t die of autism. You just learn to live a different kind of life. But isn’t that true for every single human being on the planet?
(Note: Some of this article appeared on WBUR-NPR's "Cognoscenti" blog in 2015)
