For the first three years of my son’s life, I lived a kind of “Gaslight” experience. Sometimes everything seemed fine. But other times, ordinary activities such as piling him into the stroller and going to the park would feel odd somehow, false. Something was not right, but I could not say what or why. I felt as though I was playing the part of mommy, while the real me was clenched up somewhere in the background, nauseated with an unnamed fear for my son.
Nat had autism, but I didn’t know it. It was 1993 when he was diagnosed, and no one in my circle had a child with autism or even really knew what it was. When I had Nat evaluated, I asked whether I had caused it. “Oh, no, no one believes that anymore,” the doctor said, soothing me with his pragmatic, scientific manner. “Autism is neurological, genetic most likely.”
I was grateful to hear this, but only for a little while, because the real problem was still autism. Around the time Nat turned 8, he hit a rough patch that lasted years. He stopped sleeping on any kind of regular nighttime schedule, and he began to exhibit all sorts of difficult behaviors — false, maniacal laughter, hitting and pinching, breaking things. I didn’t know how to get him to calm down, and I feared for his safety. And because so little was known about autism, no one could really help us. In a way, I found myself back at the beginning, researching the condition, trying to figure out why. Why Nat? Why me?
When I came across the theory that the measles, mumps and rubella (MMR) vaccine could cause autism, it made a kind of Old World sense to me. From what I could gather, it sounded as though the vaccine might blow apart some young children’s immune systems, making them susceptible to all kinds of conditions. I was so worn down, so miserable in those days that I was desperate to believe there was a culprit, something or someone to blame. It was a relief to think that the problem wasn’t my DNA but an outside aggressor, a mistake caused by the medical establishment’s hubris.
I wondered, if this is true, what should I do? Shouldn’t I sue someone? Kill someone, even? I felt suffocated by anger and horror and also by not knowing what to do next. But the more I thought it through, the less clarity I had.
My husband and my mother told me I had to move on, for how could we ever really know whether the vaccine was the cause? I heard them. I also heard the whisper of those very early days with Nat, when doubt needled me. Something had been off — subtle, but there — before his vaccinations.
So I did more research, and I learned that scientific organizations around the world — including the Centers for Disease Control and Prevention and the National Institutes of Health — had proved the vaccine theory false. No one could say for sure what caused autism, but they certainly could say that it wasn’t a vaccine.
In hindsight, it’s easy to understand why some parents of children with autism want to see conspiracy and evil where none exists. Living with a person with autism can be devastatingly difficult, and learning that truth about vaccines didn’t really help me. Autism seemed to have stolen my son, and he was getting worse. He’d been expelled from school for his aggression. I needed help, and his therapists kept quitting because they were afraid of him. I was afraid of him. I was sick of my life.
I hung on, of course. Spring came. Somewhere I found the strength to keep my family together and to try one or two new things with Nat, such as signing him up for a Special Olympics gymnastics team. Nat started to do better. Nothing earth-shattering, but he was communicating a little more, and he seemed a bit more tolerant of other people. It was the first time I experienced coming through a bad time, finding a light at the end of the tunnel, with Nat.
Now I look back and see that something was indeed shifting in Nat — and in me. Maybe one influenced the other: He felt my happiness, he grew confident, he succeeded at more things and felt my approval. The change was gradual. Yet it was also all at once. I remember one heart-stopping moment when we shared a laugh on the living room couch, and his warm eyes held mine for a sliver of a second. I knew he was in there, and that was enough.
I didn’t get a perfect kid or a perfect life. No one does. But when you’re a young, scared parent, you will grasp at anything to make sense of a hardship such as autism. I know that firsthand. But the MMR vaccine does not cause autism. And more important, autism is not the only tough thing that can happen in this life. A return of deadly diseases kept at bay by vaccines would be far worse.
Whatever caused Nat’s autism did not crush him. He is all there. Still very autistic but growing toward the light nevertheless.
Copyright 2015, Susan Senator