I Was Terrible at Talking About Autism. Now I Do Better.

As a social butterfly type who obviously didn’t think through the 95% isolation aspect of writing when I chose my career as a writer of novels, book group visitations are a fabulous development. For some of us, in fact, they’re as rewarding as a paycheck: a group of friendly, literate strangers, gathered around a coffee table groaning with food, a glass of wine in every hand, everyone assembled to talk about—how else to put this?—me!

In theory, the ideal book group is sixteen women who loved the book and bought extra copies to get signed and pass on as Christmas presents, but I admit I even enjoy the opposite: four retired English teachers who’ve all shared a library copy and have one or two problems with some of the plot points. Invariably, I can’t help but admire the care with which they’re read the book and the attention they pay to sections so obscure I’ve totally forgotten ever writing them.

Not long ago, though, I sat in on a book club that met at a local Barnes & Noble, which meant no food, no wine, a slightly larger than usual crowd—maybe twenty-five women who only seemed to know each other from these monthly meetings. The surprise came about twenty minutes into the discussion of my book, Eye Contact, and its central relationship between a mother and her 9-year-old autistic son. One woman praised the depiction of the hardships that attend raising an autistic child and the woman beside her said, “Well, as a mother of a 23-year-old with autism, I have to say, it only gets harder.”

Everyone spun around in their chair. Apparently no one had heard this before.

As she spoke about the painful particularities of adult children with autism (the driver’s license nightmare, the ghastly sex/girlfriend question) another woman raised a tentative hand. “As a grandmother of a boy with autism…” she began.

Again, there was a moment of silence. No one, apparently, had heard this before, either. Both women spoke eloquently about their experiences—in many ways different than my own, in many ways, the same, and then came the clincher—a younger woman, introduced earlier as the dear wife of one of the group leaders’ favorite former students said, “Well, I might as well tell you all, my 2-year-old was just diagnosed, so reading this book was a little emotional for me.” I wanted to reach over and put my arms around her and then I wanted to stand up explain her bravery to everyone there.

When you are a parent with a newly diagnosed child, one of the single hardest things—after researching and learning everything you can about your child’s diagnosis, after nights spent reading every dire prediction written for his future—is figuring out how to talk to other people about it. Even if your instinct is toward honesty (and unfortunately mine never was early on) there’s the child to consider, the possibility that he might not always be autistic.

There are no easy answers to the question of when and how much to tell people; I only know that for years I did a terrible job of talking about our struggles. I minimized his deficits with everyone it was possible to minimize them with, including his grandparents and the early intervention therapists who were there to help correct the problems. I told them he was using fifty words when the truth was probably closer to fifteen. If he behaved within vaguely normal toddler standards for the length of a visit with a neighborhood friend, I celebrated for a day, that “we had passed.”

Maybe this is a natural impulse. If you can get away with pretending, even for an hour, that you have no problems, most people don’t mind doing so. I could also tell you the elaborate argument I told myself: at the time, I believed labels were a terrible burden, that they would limit the expectation future teachers should have for him; they would see him as one thing and nothing else.

After seven years of dancing around this issue in my mind, I now see I was completely wrong. With the epidemic of autism affecting well over 1.5 million families in this country alone, sooner or later everyone will know a family or child who has been touched by this issue. The more we talk about it, the better. Rather than worry about old connotations of the label, better to use the word and point to your child and say to the world, to everyone you know: yes, this is autism. It takes many shapes, here is one of them.

To my (admittedly biased, overly self-critical) viewpoint, the best parents I see now are the ones doing exactly what it took me years to do without a trembling voice and tears in my eyes: They are speaking as honestly as possible, as early as possible about what their child can and can’t do. They are recognizing that this isn’t a judgment or a life-sentence or a condemnation. It is a challenge to be met with hard work, and professional help.

I take my hat off to the women who spoke up at that book club and reminded me of a quite a few things about the subject I was ostensibly there to instruct them on. This gets easier over time, but is never simple. A while ago at a music camp for my son with autism, one mother talked about reading Memory Keeper’s Daughter with her book club (a group where she was only parent of a special needs child) and finding herself tongue-tied and unsure how to talk about her own experience in connection with the book. I have heard this same thing a few times about this very same book. When called upon to describe our experience, even with the most well-meaning friends, it’s often almost impossible to know where to begin. One wants to get across a few key points: It doesn’t continuously feel like a tragedy; there are many joys in raising these children; he’s loving and wonderful and growing in his own ways. But you also don’t want to gloss over the reality: there are many many hard aspects, too. We don’t share the same complaints you have; sometimes we’d give anything to gripe about soccer practices or the shuttling our children from one play date to another. Our lives are different; our pleasures more home-based and probably quieter.

But when a friend asks, sincerely, “How’s Ethan doing these days?” I try to think of a recent anecdote that is a triumph for him. He participated in beginning band; he sang a solo of “Thunder Road,” his back to the audience the entire time. Something that conveys both the joy of his accomplishments and the limitations he’ll struggle with all his life. I try to be honest which I wasn’t for many years, and now understand how much better this feels.

Photo by Stuart Conway

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