Last night, yet another person told me I was deluded to imagine any adverse effects on my kids after their childhood vaccinations. I hadn’t gotten two sentences into expressing my concerns before he stopped me. As though I was a tiresome burden to his superior intellect, he said, “Marti, I’m telling you!” Wagging his finger, shaking his head. He told me I was wrong, illogical, superstitious–essentially stupid.
It will be some time before I forgive him, though he is on the spectrum and I feel it my duty to try.
I make the admission up front that I may be somewhat paranoid about vaccinations. My experience prejudices me toward worry. There is an old saying in the medical profession that when you hear hoofbeats, think horses not zebras. In other words, don’t let your imagination run away with you. But what if you have experienced zebras–that wildly unlikely thing that was never supposed to happen? When you next hear those hoofbeats, to what should you attribute the sound?
Both my children were affected by vaccinations, whether the earlier baby vaccinations or the MMR. Like clockwork they developed some sort of new throat or ear infection within a week or two of their jabs. They spiked crazy temperatures requiring trips the the hospital, scaring me half to death. These were not vaccine reactions, as such, just slow declines until, at last, I ended up at the doctor’s office.
Every time it happened, the GP said I was only imaging a connection. Being a sensible woman I thought perhaps the qualified doctor knew a little more about childhood health and the relative safety of vaccinations, so I kept vaccinating my children on the schedules prescribed at the time.
It was a strange cycle of illness. Things would go along okay and then–boom!–we’d be back to a crying child, a climbing fever. My house grew sticky with throat syrup and amoxicillin. Calpol and Ibuprofen, hourly temperature checks, cool baths, phone calls to the doctor. What was motherhood like for me? Magical bliss between cyclones of fear while the baby I loved more than I’d known it was possible to love anything, became floppy and despondent.
Both of them were like this–the one that developed autism and the one that did not. And notice how I am not claiming the MMR caused my son’s autism. I am claiming my children were unusually ill after their vaccinations but that only one become autistic, and the change that occurred in him began long before the MMR.
Imo’s illnesses were always much more dramatic than those of Nick, my second child. The worse time was when I was 30 weeks pregnant and she raged with a temperature that was moving skyward from 104. I paced the hospital with my big belly and my toddler daughter over my shoulder. They wanted to do a lumbar puncture but I told them not to because I knew–I’d seen before–that temperatures like this could be controlled with enough medication and that she’d be okay in about twelve hours. But this time the temperature was barely being controlled and they wanted her on an IV drip. I began to doubt myself. Perhaps she really did have meningitis. I spoon-fed her water every fifteen minutes all night long; I worried she might die.
Writing this, I can almost feel her infant body, the furnace of heat that radiated from her wet hair, her fiery chest. Her cheeks were prickly and red, her feet like ice. She looked so solemn in the weird hospital light, calmly trusting, exhausted. She wanted me to hold her over my shoulder and walk, but they asked me not to walk her in the hall. “The other children,” the nurse said, gently. I realised all at once they’d given us a private room because they were concerned she’d infect the ward. So I paced the room, avoiding the equipment lining the walls. It felt as though we’d been annexed from the world.
By the morning, the temperature had resolved, climbing down to 104 to 103 to 102 where it stayed for a while before disappearing altogether. I fell asleep in the chair beside her crib bed, curled around the ball of my belly, relieved that the illness had arrived and retracted as it always had, disappearing with the night. I felt triumphant and very grateful. I checked that Imo was breathing, that the baby inside me (Nick) was still moving. I slept on and off as nurses checked Imo’s temperature with an ear thermometer. I watched blearily as they acknowledged her improvement.
I wanted my husband to come and soothe me. I wanted to tell him, too, that we were safe again. The storm of her illness had resolved. We could celebrate, or at least rest.
Imo was unusually antisocial until about age four. She refused to go to toddler groups or meet new people or interact with children. The health visitor, attempting to enter the house for her three-year check, was met by a child so hysterical at the notion that a stranger was coming through the front door, that she had to retreat. I was advised to take Imo for a psychiatric evaluation.
But Imo was not autistic. In the same way she eventually shrugged off the illnesses that dogged her early years, she grew out of her social isolation, her hatred of other children, her terror of strangers. She went to nursery school. Admittedly, she started off very poorly at school, impressing none of the teachers at either the nursery or primary classes she attended. However, she showed an uncanny ability to draw so we put it down to artistic temperament.
We were right. By the time she was at senior school she was a very confident kid with tremendous gifts and social skills. She went onto to be the president of theatre club at University of Durham, then to an art college to study animation. I think she is the most socially adept, well-rounded, sunny young woman I know. Did her vaccinations have anything to do with all those illnesses? Maybe, maybe not. They certainly didn’t cause her to become autistic. Even so, I remember that health visitor and how she looked at me with a mixture of pity and disdain. “You need a psychiatric referral right away!” she insisted. Lumbar punctures, psychiatric referrals. I ignored such advice–should I have? I believed in my children’s ability to bounce back. I believed that things would be okay.
And they were, until they weren’t. Nick deteriorated markedly from about 19 months until 36 months at which time massive intervention helped him begin to acquire language and play skills. I spent years on the floor with him, showing him the great fun of crashing his cars “Crash!” I’d say, encouraging him to try the word. “Go!” I’d say, waiting for him to repeat me so I could blow bubbles through a wand.
I took advice, sought help, paid for consultants, and studied everything available about how to foster language and play skills in a non-verbal autistic child. There wasn’t much but this message was clear: interact with the child every waking hour…take them progressively through the steps of development they hadn’t acquired. Be gentle but tenacious. Reinforce, backward-chain, chunk everything down and teach in sequence. Little step, little step…
Do I think there is a connection between vaccinations and autism? The experts say not. As for me, I can only report what I saw: vaccinations seemed to make my kids sick, but maybe they would have been sick anyway. Of course, measles might have killed them and they didn’t get measles. Why? Because nobody got measles. Vaccines prevented it, you see. A case of measles would be like the zebra hooves you weren’t likely to hear. Rare, unlikely. Like autism.
Eula Biss the author of On Immunity quotes the historian Michael Willrich, saying, “Perceptions of risk–the intuitive judgement that people make about the hazards of their world–can be stubbornly resistant to the evidence of experts.”
Am I being stubborn even to relate the story of my children’s babyhoods and illnesses and the schedule of vaccines I followed, though I grew increasingly concerned? Is it impossible for me to both suspect that the vaccinations may have been involved in how frequently they were ill while simultaneously agreeing wholeheartedly that vaccines save lives? Must I be in one camp or another? Must I deny what I saw? Will I be imagined as part of a “movement” for writing about what my family experienced? Should I be bullied into silence?
I made an doctor’s appointment for my son to get a vaccine he missed during secondary school because he’d been ill when they were vaccinating…so, it isn’t that I don’t try to go along with things.
Perhaps it is simply a measured, mature view to be able to hold two opposing thoughts in tandem: that vaccines save lives; that vaccines may have been implicated in the relentless illness both my children suffered. I’m not talking about autism, though one is autistic and so that fact, among the others, must be included in the story.