The Hard Art of Balancing Writing with Raising an Autistic Child

I was a twice-published novelist on the day that my husband Michael and I went to see a psychologist about our son. William was so fearful and inflexible that in spite of the reassurances of various friends (“but all kids like routine/have tantrums at the age/watch videos nonstop”), we had to admit that something wasn’t right.

He’d just been expelled from his pre-school.

It’s hard to believe, now that the term “autism spectrum disorder” is so widely used, that back then, in 1993, the word “autistic” was still red-hot. Radioactive. Fatal.

The therapist we met that day, Janet, loaned us a book by Stanley Greenspan and told us to read the sections on PDD. Janet handed me a stack of case histories, which I read dutifully: they all described toddlers and pre-schoolers, mostly boys, who were similar to Will, though the words “autism” or “autistic” were still never mentioned. The tales, however, were daunting: Their main focus was on how the family united to form a multi-faceted assault on the child’s problems, with speech, occupational, and psychotherapy—for starters.

There was one phrase that was identical, word-for-word, in each one, “the mother gave up her job to coordinate and participate in her child’s treatment.”

But I didn’t have a regular nine-to-five job. I had a calling. I was a writer.

*

When my son was born, writing did become more difficult, but the novel I had sold when I was pregnant was published by the time he was a year old, and I had been hard at work on my third since. No one had warned me, though, that after you sell two novels the upward trajectory doesn’t necessarily continue. On the afternoon that my agent called to say that she wasn’t able to sell my third novel, Michael and I were still trying to figure out what was going on with Will, and my second child was two weeks old.

*

Even Freud, not exactly history’s most famous feminist, said that a person needs both love and work to be whole. Janet told me that I stood at the crossroads—I needed to choose.

“Don’t you want to be an advocate for kids like Will?”

No. Not really.

The women who become advocates for kids with disabilities—“Warrior Moms”—do more important work than I do. The world (and its children, and those children who will become adults) need them a lot more than they need another novel. Under other circumstances, these mothers would be fine lawyers, community activists, advertising execs.

John Gardner summed up my problem: “Nothing is harder than being a true novelist, unless that’s all one wants to be, in which case, while being a true novelist is hard, everything else is harder.”

*

Janet told me, about a mother’s support group that met in the mornings at the Child Development Center.

“I usually write in the mornings,” I said. That was my one block of time. I was frantically looking for a quick fix to my own problem: I was planning my not-exactly triumphant return as published author in the form of a gimmicky book, maybe sweet but funny observations about new motherhood—though stripped of any reference to the early signs of autism.

Janet found me self-pitying. During one session, when I started to cry, she said, “There are kids with Down Syndrome, there are quadriplegic kids!”

I cried harder. She suggested we meet more often.

It wasn’t just from Janet: Even though I avoided the support group (there are many reasons that I’m a writer and one of them is that I hate groups of any kind) I was surrounded by Warrior Moms whose lives revolved around Applied Behavior Analysis (the intensive autism therapy) and gluten-free diets.

*

How do you give up the most important thing in your life for the most important thing in your life? This is not the “balancing act” that parents write about. This is a tightrope walk across one’s sense of self.

We’ve all heard stories about the bestselling authors—women—who rose at 5am, wrote for three hours, and then got their six children off to school and themselves to their jobs, until they made it big. But I’m not that strong or energetic. Most of us aren’t. Those stories are like saying to someone: “Mozart wrote his first symphony when he was eight! What’s wrong with you, you slacker?”

I’ve also read more than one interview with well-known writer-mothers who declare, “My kids come first.” Well, yeah—if your kid screams in the next room and you find them bleeding from a previously undiscovered orifice, of course you rush them to the ER. But what about when they come to you to say, “Mommy, I’m bored. Play Monopoly with me”? I think the moral of this story is clear.

The next few years were a three-way tug of war among myself, the Janets of the world, and my own conscience. I continued to flounder, to look for the gimmick, and sometimes to try something different, although writing-related: book reviewing, magazine writing, editing, and even working at a literary agency.

I didn’t know that, eventually, life would improve, for me, and for Will. He became far less rigid and fearful, and his speech ballooned. There were even times when I thought it would all go away. It did not.

But he did find ways to engage with the world. He attended a regular school with an aide. He played sports. He took drama classes. We had birthday parties for him, and the whole class came.

I found ways to shut out the world: to close the door, to turn off the phone, and later, even the WiFi, and thus, at last, return to the real work of writing fiction.

Janet backed off.

I wrote a fourth novel that didn’t sell.

I wrote a fifth novel that did.

Writing continues to be as meaningless and difficult as it always has been. But everything else is harder.