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The Ghost in the Machine
by Cammie McGovern

Maybe it makes sense that I started reading mysteries around the time Ethan, my first-born son turned three and—after an infancy and toddlerhood fraught with colic, gastrointestinal issues, and many, many missed milestones—got a diagnosis of PDD-NOS, a catchall, utilitarian term for children who might not seem classically autistic, but have more than enough of the traits to put them on the spectrum.   By that point, I was spending fifteen hours a day luring my son into playing with toys, noticing other people, recognizing the words that babies a year younger were already using.   In the exhausted few minutes I had to read before falling asleep at night, I reached past all literary classics to tales of murder and suspense with the simple thought:   I wanted books about people with bigger problems than my own.

Now I wonder if maybe there was more to it than that.   Autism comes with so many mysteries attached.   When a child is initially diagnosed, every parent gobbles up stories of recovered children because the first mystery is this:   Will my child be one of these precious few lucky ones?   Hope is so crucial in the beginning and my husband and I had it in spades.   We made eager lists of the autistic peculiarities he didn't have:   He has some words!   (Granted they were mostly echolalia, repeated phrases he'd heard during the day, but still…) He never lines up cars!   He doesn't mind having his routines changed!   We signed him up for an integrated, special needs pre-school, hoping by kindergarten, all this would be behind us. On his kindergarten IEP (written when he was still four) we have recorded in our parents' vision statement:   We hope that by first grade, he won't need an aide.   Now that he's is third grade, is it sad to admit that I can't imagine the day when he could cope in school without one? Maybe a little.

But now the mystery itself has shifted and become more specific to Ethan.   Who is this boy and why does he love lawnmowers so much?   What is it about machines, floor buffers, or a pile of sand he can sift through his fingers?   After nine years of watching my son tirelessly, I don't know the answer because these are the mysteries he shares not with his family, but with his autistic brethren.   At a recent support group, one mother related a story from the weekend about her son, “He finally got a birthday invitation and when we got there, they had TWO fans going.   Big ones, too.”   We all laughed and hardly needed to hear the rest of the tale because we already knew it—these were kids her son liked, that he could talk to, sort of.   He might have done fine, come to the table for games and cake at least, but instead he spent the party staring into the fans, studying the dials, their various settings.

This is how it is for every family with a spectrum child I know these days.   Therapies, diets, countless interventions have pulled many of these children out of the wordless, hand-biting, head banging shells they might have spent their lives in had they been born twenty years ago.   Now there are brushes with normalcy, snatches of the unexpected: initiated conversations, shared pleasures, even in their own fashion, something like friendships. But there's always this: the pull of fans, of a thousand fixations every spectrum parent recognizes and doesn't, in their heart of hearts, understand.   Why does my son ask, as a standard question of strangers, if they own a chainsaw?   Why can he make it smoothly through four days of school and on the fifth fall apart, so dramatically he must spend an hour in the nurse's office pulling himself together?   Why does his life, which has undoubtedly improved, continue to be so hard sometimes?

The answer every parent of an autistic spectrum child has grappled with, fought, and wept at night over is this:   It just is.   These passions, these fixations, these inabilities to cope are part of my child and part of our life.   In the early days, the scenes were often so public and so huge that I learned the art of escape, of leaving grocery stores and parties with a flailing, crying child pressed to my chest, without good-byes or even, if possible, making eye contact with anyone. Now the escape comes in different forms.   We buffer ourselves with families who know and understand; almost every party we go to these days has two or three spectrum kids sprinkled in the mix.  

All of these families began their journey in a similar place, with a child whose brain would need re-wiring.   However this is achieved—through compliance-demanding ABA therapy or the floor time approach of joining play and expanding it—the fundamental goal is the same:   to push the child away from every innate instinct to withdraw, to block out, to isolate himself from the world that is busy and loud and complicated.   Every parent of an aging autistic child has spent years gently, and not-so-gently urging, insisting, forcing their child to do something besides spin car wheels, flick light switches, open and close the same cupboard door five hundred times; in other words, something besides the empty and unproductive thing they most want to do. And then one day it occurs to you:   my child is nine or ten or eleven and he loves these things—his machines, his music, Bruce Springsteen, lawnmowers.

Once I heard two of Ethan's classmates discussing Fear Factor, a reality show with prizes awarded for completing gross dares.   They began asking each other, “What would you eat a cup of worms for?” and a matter-of-fact girl who's known him since kindergarten said, “Ethan would probably do it for a motorcycle.”   At first, I panicked; convinced she was making fun of him.   That she might keep going and say, “He's so weird he'd do it for a weed whacker.”   Then the table nodded, including Ethan who occasionally manages to look like he understands what I'm pretty sure he doesn't.   So every one was nodding.   Eat worms for a motorcycle?   Yep.   Ethan would.   And I thought:   This is where we are.   These are the things he loves, as inexplicably and mysteriously as I love my books and his father loves drawing pictures at night of plans for a house addition.   They are his passions, the things he clings to though no one in his family understands why.

Much isn't understood about Autistic Spectrum Disorder, including its origins and its causes, but this much is known:   the numbers of diagnosis are on such a steady and alarming rise worldwide that many doctors are describing it as an epidemic.   There are estimated to be a half a million people in America alone with an autism diagnosis, 170,000 of them children younger than fifteen, but even this number may be woefully conservative.   Though we have a long way to go in researching this disorder, we have come light years from where we were.   Now we understand many of theses children have broken-down immune systems; they are constantly sick, weakened by an infancy spent on antibiotics, with digestive tracts that rebel against ordinary foods.   Oftentimes, the fragile and effected brain is only one of the problems.

For some, miraculous cures come in changing the diet, and supplementing food with enzymes and vitamins.   Doing this, the body finds its stasis and begins the wonder of healing itself and developing normally.   For others, it is less clear.   Some problems resolve; others crop up.   For Ethan who went from a ten-pound baby to a “failure-to-thrive” diagnosis when he was four and hadn't gained a single pound in a year, there's no question that the diet he's on now has improved matters enormously.   He's eating, gaining weight, now bordering onto roly-poly.   But here is another mystery:   Why isn't he cured?

I suppose I wrote a mystery with a murder at the center because I love the way these stories unfold and surprise, and the impossible feats of simple logic they often hinge on. I also love these stories because they bring with them the relief of a solution, a problem resolved and a tidy ending.   Life with an autistic child offers none of these salves; it simply goes on, a daily parade of variables and unknowns.   One day Ethan gets a hundred on the spelling test, the next day he sobs at the sight of the fat pencil he's meant to write his words with.   Well-meaning friends will offer their corollary stories:   “Oh my son does the same thing, freaks out over nothing…” or:   “Mine was shy when he started school, too.”   These words are offered in kindness, and I imagine meant to say, we're all in the same boat, except that as any parent of a spectrum child will—I'm guessing—agree with me on:   we're not.   There's a world of difference between quirky or shy, and autistic, and the parents who are living with the latter may not want to banner-wave their depressing realities, but they're present nevertheless:   this child may well never go to college; he also may never live independently.  

But here's the other side of these late-night whispered, teary fears coalescing into reality:   At some point, feeling depressed by them simply grows old.   Life really does go on and so do families.   Ethan's younger brothers have grown up in a family with the gift that I've seen in many siblings of children with special needs:   the confidence born from being good at many things their older brother is not.   They are also alert to this reality:   there are people in the world who need their help.   Autism has shaped our family and—I believe, I hope —has made it stronger.   With our younger children the wonder of normal development seems so miraculous we can hardly imagine worrying over the small fears that plague many parents.   It has brought with it friends, more precious because they've seen us at our worst and have still called the next day.   They have their own fragile children, their own laundry list of similar stories.

Surviving all this—embarrassment, public scenes, the prospect of more and maybe even worse in the foreseeable future—steels one in countless other ways.   During the course of Ethan's first three school years, I published one novel, and wrote and sold a second that I eventually abandoned when multiple drafts seemed to only make it worse.   Before Ethan's birth, such a roller coaster career of highs and lows would have sent me to a therapist where I could have sat, a box of Kleenex in my lap, and outlined, in detail, all the evidence of my failure.

Instead I hardly remember what I felt as all this was happening.   In truth, I was too focused on Ethan.   He was in first grade at the time and was having a hard patch.   There were good days, but there were also many, many bad ones and nothing was predictable.   Though I tried to monitor this impulse, I couldn't help it (I still can't actually):   My own moods rise and fall in correlation with Ethan's day.  

I do remember sitting beside the bath at the end of a particularly hard day.   The relief of abandoning the book was still huge and fresh in my mind.   I didn't have to go back and re-write the opening for the 20 th time!   I didn't have to solve this problem or that problem!   I was washing my hands of the whole hopeless mess!   But that relief was shadowed by the day we'd just had:   tears in the grocery store, a scene in the parking lot, a note from school saying, cryptically, There was a little problem today with Ramona.   With a child, it isn't possible to walk away; it isn't even possible to distance oneself emotionally.   When he started to echo some patchwork of phrases he'd heard during the day, I held my breath and tried to piece together whatever might have happened. This was how he first learned to talk, repeating other people's words. In the past it was often rules and warnings, his way of absorbing the things he'd heard.   Now he growled, “It's not okay to hit Ramona.   You can't have the glue.   It's not your turn.”

Usually asking questions only snapped him out of these echoed monologues and back into silence. I tried anyway:   “Did something happen with Ramona?   Did she have the glue?”

He rocked back and forth in the tub, the way he does, I believe, when he's thinking an answer but not saying it.

“You know you can't hit other kids.   That's never okay,” I said.

Usually he doesn't, but that was a small comfort in this case.   What exactly happened?  

Ethan stared at his bubbles.   “You can't hit because people break and their insides come out.”

Dear God, I thought.   What happened?

As it turned out, nothing all that dramatic had, but sitting next to Ethan piecing together a story from his day with my stomach in a knot, an idea came to me: What if something terrible had happened?   What if he was a witness to something and there were no other sources to clarify his story?   What if a whole community was hanging on these convoluted stories he tells?  

I wrote Eye Contact quickly;   from this seed, it expanded into what I hope it is now:   a suspenseful tale interwoven with a portrait of a mother and son and extraordinary relationship that I have so often witnessed between special needs children and their parents, a bond forged in the painful isolation of an infancy and early childhood where every door to the future and the real world of typically-developing children feels closed and all your hours are given over in the battle to help your child achieve ordinary milestones.   I wrote this book only as I was emerging myself from that cocoon and seeing, for the first time, the way having such a child had redefined me:   taught me to celebrate the most modest victories, to see and count the smallest blessings.

Ostensibly the story of this book has a happy end.   It has sold to a wonderful publisher; Julia Roberts, bless her heart, has bought the movie rights, apparently having been interested in the subject for awhile.   In fact, I've come to understand that a lot of people are interested in autism now, in large part because the sheer numbers out there means that anyone reading this will know an autistic child sooner or later.   I celebrate this growing interest and awareness because I see how it's made my son's life better. Every day, I witness surprising acts of kindness from a community of people who seem to understand these children do want to connect even if all the ordinary bridges—of language, games, and sports—are puzzling and difficult.   I see adults bend over, take all the time in the world to talk to Ethan about something that has captured his interest: a musical instrument, a pencil sharpener, a surprising zipper on a pocket, and I want to weep in gratitude for these small, but important kindnesses.   In other children I have seen more examples of generosity than I have of cruelty:   doting, maternal girls who take him under their wing and walk him through a gluing project;   patient, oblivious boys who seem not to mind when, in lieu of knowing what to say, Ethan touches their shirt hem, or stares at the complicated hole-pattern on their shoes.  

When I am asked why I wrote this story as a novel and not a memoir, my first answer is that I tried the latter and couldn't do it.   I am a fiction writer and have been for fifteen years.   The other answer is that the memoirs I loved reading after Ethan was first diagnosed had begun to depress me.   They seemed to carry a certain weight of expectation; people look to them for optimism that compels the writer to tally up evidence of the child's improvement by the end:   He has a friend now!   He talks on the phone!    I wanted to tell a story with a slightly different slant, one that has been truer to our experience—that the hardest part about autism hasn't been fighting it, but in the end, accepting it. By creating a character, it was easier to get at what felt like the truth:   most children diagnosed will not outgrow their autism or leave it behind.   They will get better, though, in large and small ways and life will get easier. My son does have friends now, in his own strange fashion.   He does talk on the phone, though I have to be there, reminding him of the rudiments, like saying “hello” at the beginning and “goodbye” at the end.  

Our story does have a happy ending, just not the one I once dreamed of telling. It's the story Ethan shares with this generation of children coming of age and looking to take their rightful place in the world that will hopefully have learned, bit by bit, story by story, how to make a space for them.