The autism leap

Each morning when my husband leaves for work, he first says goodbye to the baby. “She doesn’t look back at me yet,” he tells me one morning. “But I’ll keep saying goodbye, because someday she will.”

It’s true: The baby doesn’t turn his way. She doesn’t follow him with her eyes. Our peaceable girl is not like other babies, and something feels wrong.

But is it wrong? Or just different?

The word autism automatically conjures wrong.

That question—wrong or different?—will attend me for the rest of my life.

Six years later President Donald Trump suggests Tylenol taken during pregnancy causes an increased risk of autism. The administration’s approach does not treat autism as a diversity. It treats it as a disaster.

An immediate outcry erupts. Among the many voices, the American College of Obstetricians and Gynecologists calls it “highly unsettling that our federal health agencies are willing to make an announcement that will affect the health and well-­being of millions of people without the backing of reliable data.” A meme floods my social media feeds: “I don’t know who needs to hear this, but you did not cause your child’s autism.”

These things were helpful to hear, since I took Tylenol during the first few months of my pregnancy—until my chronic migraine got so bad the obstetrician prescribed propranolol instead. (Propranolol, like most medications, is typically avoided in pregnancy unless absolutely necessary.) So the presidential address brings a brief pang of alarm—a pang mostly alleviated by the outcry.

But only mostly. I don’t feel the pang because I’m afraid I caused my child’s autism. I’m afraid of the possible motives behind the address.

Can autism be cured? Should it be cured? Short of that, should autistic people conform to neurotypical standards of behavior? Will a widespread yes to any of these questions lead to heightened discrimination for my daughter in the future? Do people really think the world would be better with fewer people like her?

I remember reading this line in Virgil as a teenager: “Hysteria finds a missile.” For me, this phrase maps onto the presidential address. The hysteria comes in response to climbing autism numbers. (These numbers demonstrably owe to expanded criteria for what the disorder includes, not an unexplained “epidemic.”) And the missile, it seems, is Tylenol-as-bogeyman. At whom does the missile aim? The makers of Tylenol, of course, but also mothers of autistic children and autistic people themselves.

The autism diagnosis I so resisted put me in league with the broken—other disability moms experiencing diverse kinds and levels of suffering. Now I meet them everywhere—at church, at Aldi, when I go to the mechanic. I don’t mean to call their children broken. But these parents usually are. From their broken expectations, they’ve built beautiful lives.

Another phrase flicking across my brain in the wake of the autism address comes from Crime and Punishment. Yes, I took Tylenol during pregnancy, but “from a hundred ­rabbits you can’t make a horse, a hundred suspicions don’t make a proof.” As medical professionals rushed to declare after the address, Tylenol as cause for autism is a leap into the absurd.

My daughter got the autism diagnosis at 3. I had to fight for the diagnostic appointment. Many phone calls. Endless waiting lists.

To be clear, I didn’t want the diagnosis. I wanted it to be anything but autism. Could my daughter’s social irregularities spring from her COVID-era babyhood, necessarily starved of many typical social interactions? Not-autism to autism requires a huge leap in a parent’s brain. I badly wanted to stay on the safe side of the gorge.

But I needed help—which a widened criteria for autism makes possible, even for a mother who can’t tell at first if a disorder really exists in her child. I built a quiet list in my brain: On one hand, she didn’t talk much and made infrequent eye contact. On the other hand, she didn’t need physical therapy and could pour a glass of water without spilling a drop. (She walked at 9 months!) On the other, other hand, she was funny and loved to make us laugh. I believed (among other stereotypes) that autistic people wouldn’t connect socially in this way.

And besides, she might just be a late bloomer. I tried to interest her in drawing for many months with no success. Then, one day in the park, she took a beefy stick of chalk in hand and decked the entire sidewalk with giant, perfectly formed lollipops. There was no denying she learned in leaps. Now, at 6, her art astounds us.

I later learned that this pattern—learning in leaps—also frequently occurs in autism.

THE DAY THE DIAGNOSIS fell on us like a hammer, I called my mother to tell her the news. She gave me a seasonable word. “We don’t know what causes it,” she said. “So stop worrying about that.”

A mix of factors (including, prominently, genetics) lies behind the moment of diagnosis, which feels like both grief and relief. This painfully tender crisis is certainly not the moment to tell a woman she caused her child’s autism. Particularly without robust evidence.

I no longer feel my daughter’s diagnosis as a point of pain. Like many disability moms, I’m accustomed to being misunderstood based on my child’s outbursts in church, unresponsiveness to questions, atypical patterns of speech, or sudden aggression. By now I’ve moved well beyond that tender first stage (“What caused this?”) into new questions.

First—What does disability teach us about Jesus? My daughter teaches me weekly that church is not about “good behavior,” and also that a person’s value does not spring from his or her social facility.

Next—What gifts does the autistic brain have to give us? (My favorite meme circulating the day after the announcement pointed out that many scientists are autistic; therefore, autism causes Tylenol.)

And instead of finger-pointing, which I did subconsciously before I knew my daughter, I ask: What suffering do autistic people undergo, and how can I help?

My daughter, for example, has just started expressing that she wants to say much more than she is able to. She can’t find the right words—her speech, though growing, seems limited to certain constructions for much of the time.

I’m expecting many more leaps from her. I try to remember to expect as much as I can.

I MET A GUY in a coffee shop a few months ago, and autism came up. He said, “I think it’s the next leap in evolution.”

Make of that what you will. In general, neurotypical people don’t have the same gifts autistic people have. Someday, all God’s people will take a leap into glorified bodies, unlimited resources, and endless understanding. Until then, what matters most is that we welcome autistic people like Jesus does.

I know this because people have done it for my daughter. For example: She loves to spin to the music in church. I’ve spent many weeks trying to keep this spinning contained so she doesn’t get too close to the front and distract other worshippers. One Sunday this fall, she spun out of my control—all the way to the front. I started to run to restrain her (then probably carry her out screaming, as I have done many times). Our pastor held out his hand—not to her, but to me—meaning, stop.

I stopped. I felt with a jolt that I had seen the heart of Christ.