Visiting Book Groups and Talking Autism by Cammie McGovern:

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As a social butterfly type who apparently didn’t think through the 95%-of-the-time-spent-in-isolation aspect of writing when I chose my career, 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, a wine glass in every hand, a coffee table groaning with food, everyone assembled to talk about—well, a book that’s certainly interesting to me! Of course, the ideal group is sixteen women who loved the book and bought extra copies to get signed and pass on as Christmas and birthday presents, but I have to admit I even enjoy the opposite extreme: four retired English teachers who’ve all shared a library copy and have one or two problems with some plot points. Inevitably, I can’t help but appreciate the care with which they’ve read the book, and the reminder that there are careful, smart readers out there.

Recently, though, I sat in on a book club that went quite differently. For starters, they met at a local Barnes and Noble, which meant no food, no wine, and a slightly larger than usual crowd—maybe twenty-five women who seemed to know each other primarily from these monthly meetings. I should insert in here that my book, Eye Contact is a novel, a mystery about a young boy with autism who is the only witness to the murder of a classmate, and his mother who must try to read his clues and figure out exactly what he’s seen. It is entirely fictional, except that I am the mother of an eleven-year-old with autism, which means that I usually spend most of these visits talking about this—the scope of the autism epidemic, our experience with it. The surprise came about twenty minutes into the discussion. One woman praised the depiction of the mother-son relationship in the book, and how hard it must be sometimes to parent 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 particulars of parenting an adult with autism (the driver’s license nightmare, the ghastly sex 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 briefly and eloquently about their experiences—in some ways different than my own, in many ways, the same. 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.” Her face was a little red, her eyes rimmed with tears. I wanted to reach over and put my arms around her and then I wanted to stand up and explain her bravery to everyone there.

When you are a parent with a newly diagnosed child, one of the single hardest things to figure out is how to talk to other people about it. Even if your instinct is toward honesty, there’s the child to consider, the possibility that talking too much, too freely, might impact his future. I know that for years I did a terrible job of this. I minimized his deficits with everyone, 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, 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 people’s expectations; everyone would see him as one thing and nothing else.

After seven years of dancing around this issue in my mind, I now think I was completely wrong. With the epidemic of autism affecting over a million families in this country alone, sooner or later everyone will know a family who has been touched by this issue. The more we talk about it, the better; the more possible it will be for the word autism to change in people’s minds. Rather than worry about old connotations, better to use the word and say, yes, this is autism. It takes many shapes, here is one.

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: they are speaking as honestly as possible, as early as possible, about what their child can and can’t do. They recognize that this isn’t a judgment, or a life-sentence, or a condemnation; it is a challenge to be met with hard work, professional help, and parents who are ready to get to work.

Admittedly, this gets easier over time, but it’s never perfectly simple. Last week 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 how she found herself tongue-tied and unsure how to talk about her own experience in connecting it 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.

These days when a friend asks, sincerely, “How’s Ethan doing?” 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 will continue to struggle with all his life. I try to be honest which I wasn’t for many years, and only now do I understand how much better this feels.

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Cammie McGovern

Eye Contact

Penguin Books

autism

books