Putting Autism in its Place

There's more than one way to get lit
There’s more than one way to get lit

Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with an alcoholic taught me to be flexible and to live with a specific kind of uncertainty about what each day would bring. In recent years I discovered that if I replace the word “alcoholic” with “autistic” in the Al-Anon daily meditation book, it works beautifully, if not in exactly the same way.

The most dangerous thing I allow myself to do is look back and see the years in my between alcoholism and autism and idealize them. I think everyone indulges in this during a standard-issue mid-life re-evaluation. We see high school, college, single life, some point in our youth as something that slipped away accidentally rather than as part of a progression to a fuller life. George Bernard Shaw had it right: youth is wasted on the young. What I’ve come to appreciate by looking back is the value of the cumulativeness of my experiences. For all the randomness of my choices, they all seem to have prepared me for the life I have now, unexpected and unpredictable as it is.

Laurie Anderson said in a great interview with the New York Times that she has “zero time for nostalgia,” and that is a phrase I keep in my head because the world is changing so rapidly that I want our kids to know what the world used to be like without getting myself stuck there. In the process of talking about the past it also occurs to me that for all the good experiences we try to create for other people, we have no control over how they see or will remember it. I have no idea what my parents were thinking half of the time they were raising us, but it’s clear to me now that regardless of their intended blueprint, my own memories were built by me and there isn’t a lot they can do about it now. The reality of a large family is that there are as many versions of the truth as there are people. Our children haven’t even left home yet and they are already constructing versions of their childhood that bear little resemblance to the one I thought we gave them.

And autism? It is a changeable, petulant child all on its own. The disorder I learned about in 1998 is unrecognizable to me. I was not a refrigerator mother, my child’s brain is not empty, limited eye contact does not mean a lack of engagement, and we enjoy a level of love and empathy we were told was impossible. It morphs and changes along with the boy, advancing and receding on a schedule known to no one. It’s a cat, a bowl of Jell-O, a dish of mercury, a block of granite. I will follow it, chill it, contain it, haul it around, chip away at it – whatever it takes to deny it center stage. That’s the job, that’s my job, and every day it will change and still be the same. It’s not something I planned for, but I know it’s what I was meant to do.

1919-1992

Today is the 18th anniversary of my father’s death; my mourning has come of age.   The hot days of summer bring back all kinds of memories of him and playing them back and filling in details is a process that seems to dominate every July.  As much as I love him, most of the years we spent in the same house would never make a highlight film of his life.  And as much as he loved me, I am haunted by the bittersweet feeling and misplaced sense of responsibility that there are people and tasks that merited his attention and did not get it.

Depending on how you look at it I was in both the right place at the right time and the wrong place at the wrong time.  Appearing late enough in his life that I offered the joyous, no-strings-attached love of a little girl when such attention was in short supply, and in return I got the attention every small child craves from a parent.  My late arrival also afforded me a front row seat to a mid-life bout with alcoholism whose confusion scattered our family in untold directions.  I found myself adrift and distracted in the eye of the passive aggressive hurricane that characterized my parent’s marriage at that time, my allegiances shifting daily and instilling in me an unsettling certainty that there is no such thing as the whole truth.

His story ends well, with beloved grandchildren, an embrace of cooking, work and friends in the community, and a rekindled friendship with my mother.  She liked to say that the first 15 and the last 10 years of their marriage were worth all that happened between.  As it happens, what happened in between was my childhood. While I maintain that it was a happy one, I find myself sorting through it like a jigsaw puzzle, trying to make the brightly colored, oddly shaped pieces fit.

The inequalities of parental love – or any love at all – are tough to reconcile, and because I have witnessed in other families the carnage that can result when people attempt to settle old scores, I find myself overly focused on fairness and communication with my own children, knowing full well I have no control over how they might view their lives, and my role in them, fifty years on.  But what I carry with me is the sense that my parents, my family, have loved me the best they can, and that I should lift my head from the puzzle and work each day to return the favor.

Overseas

Dad in WW2

This is our mother’s favorite photograph of our father. She kept it under the glass on her dresser, along with dozens of other photos of her children and grandchildren.  The dresser was several feet long, allowing enough surface area for a single column of photographs depicting each child from infancy to adulthood.  The picture of Dad was in the upper right hand corner and must have been covered by a jewelry box or a lamp, because I don’t recall ever seeing it until she carefully removed it from under the glass to give to me shortly after my father died in 1992.

He is sitting near a beach in a tee shirt, his sloping shoulders, relaxing tanned arms down to hands resting on khaki-clad knees.  He seems happy.  From a distance it is not clear whether he is looking at the camera, and one might surmise that he is looking off in the distance.  But upon closer inspection it is clear that his shadowed eyes fixed on the lens, and that makes his smile seem a little more self conscious, more guarded, but upbeat nonetheless.  It was wartime in the Phillipines, after all. 

A few years back Steven Soderbergh directed a film set in World War II (The Good German) which he shot using only cameras, lenses and lighting that were available in 1946.  Soderbergh, spoke in the Times about the use of direct incandescent lighting and the unique, noir-ish quality of the shadows that type of lighting and lens created.  This photograph evokes that style, with deep shadows and warm whites depicting men in manly poses wearing simple, military issue clothing.  The ocean waves behind them provide the only patterns.

Who took the photograph and the identity of the man on the left remains a mystery; my mother didn’t know either, which I find particularly odd.  But it suits his overall story, I suppose, for he was a man with many friends, many stories and a selective memory.  Born and bred in the landlocked Midwest, he left his college career and enlisted in the Navy after Pearl Harbor, and shipped off first to Philadelphia and then to Manila.  I surmise that one of the reasons my mother loved this particular photo is that, besides showing him as he was when they first met, it captures on his face his love of the sea, his joy and satisfaction at being part of something big in a place an Iowa man would never expect to find himself.

But for all of his stories, and his gift for telling them, his war years remained largely a mystery, at least to me.  He watched every WWII documentary, read every book about it, but the only details he shared with us were with maps, showing us the islands he went to, and sometimes the kinds of ships he guided as a harbor pilot.  Some of my siblings, in search of an explanation for the years that followed, theorized that that happened in the war drove him to drink later in his life.  When he lay dying, one of them plucked up all of his courage to ask what happened in the war, what sort of injustices led him to the bottle.  The answer was wholly unsatisfactory.  That was just who he was, he said; there wasn’t a reason, no deep dark secret.  He drank because he liked to, needed to, and he stopped drinking when it stopped helping.  It sounds so simple, so unarguable, when put in those terms.  Even so, there are those that believe he simply was not willing or able to talk about all of his war experiences.   So all we have is the photo hidden in plain sight until it was too late to find out the story behind it.

Double Solitaire

I wrote this a few years ago. Today is the seventeenth anniversary of my father’s death.

The journey began simply, with a round of Go Fish. I was playing cards with my eight-year old daughter while her younger brothers paraded around the living room to Souza marches, wooden spoons in hand serving variously as batons, trombones, flutes and drumsticks. As the boys circled the sofa, we played our game. It progressed quickly; the cards had been poorly shuffled from the last game and she won. She leapt up to join the parade, leaving me to shuffle and put the cards away. I watched them march happily as I shuffled the deck and, without thinking, laid out a row of seven cards in front of me.

As I dealt the cards for solitaire, in my mind the cotton tablecloth turned to smooth polished cherry, the track lighting to a china lamp on my left and our dining room to a corner of the living room in our family house in St. Louis. Across from me I saw my father, playing his own hand of solitaire, deftly, seriously, quickly. It was the early 1980s and in those days we played double solitaire endlessly. He would play with anyone who was willing and as we sat in the delicate but sturdy cane chairs that my mother painted with pastel flowers on a black background before she married, the hours and the cards flew.

The games were fast-paced and good-natured but there was a frenetic quality to them.
It was the closest thing to exercise I ever saw Dad engage in (we used to howl at his morning calisthenics, which consisted of making tiny circles with outstretched arms and toe-touching that somehow never involved actually bending over). But when my turn was over and I observed him playing with my Mother I saw that he wasn’t playing, he was working.

Mom said he was learning to think again and she was right. The old ways of thinking and doing had washed away in a flood of booze, and now that the tide had receded he was repairing the damage, repaving the mottled roads in his brain. Decks of cards and stacks of encyclopedias and dictionaries crowded his side of the table and the library table behind the winged back where he spent his afternoons. When he wasn’t playing cards he was completing crossword puzzles, one right after the other. That’s how he filled his days during those early years of their retirement. He was learning to live again and he did it one puzzle, one game at a time. We bought new decks of cards when the old ones wore out and kept him supplied with crosswords and new, more specialized dictionaries for finding the right words: rhyming dictionaries, medical dictionaries, crossword dictionaries, thesauruses.

In time he turned his attention away from the cards (the puzzles remained, always) and began watching more television, which seemed like a step backward at first. He watched Wheel of Fortune and the Price is Right, Lawrence Welk and Hee Haw, and then, gradually, The Cookin’ Cajun and The French Chef. I had moved away by then and when I came to visit, it was he and not my mother who made dinner and traded recipes with me. The man who, throughout my childhood, hated onions and ate canned pears with cottage cheese every night was cooking with garlic, fresh thyme and sesame seeds. Hershey bars smeared with butter (no kidding) gave way to sorbet, oysters on the half shell and homemade soup. After almost 40 years of cooking my mother was thrilled to turn the kitchen over to him, and he gave me my first serious cookbook, Craig Claiborne’s New York Times Cookbook. It’s out of print now.

But those card-playing days started it all. They were his entry back into the family after years of physical and emotional absence. Typical of his generation, there was no twelve step process or open acknowledgement of alcoholism. Instead there was a new, carefully constructed companionship: rides in the car, casual meals out, shared books on history, stories told of World War II and a life lived mostly in small town Iowa. There was reading, punctuated by snoring, before the well-tended fire. And with his grandchildren he renewed the sweet rituals of our childhood with trips to the five and dime for treats and baseball cards, and long babies’ naps on his ample lap. Through all of the years he never lost his gift for calming babies.

Who is to say what makes someone withdraw for years at a time and then suddenly awaken? Watching him is as close a look as I’ve ever gotten to the door between this world and the one where depression stifles every impulse to live and connect. I sense it sometimes, the numbing sensation that makes me want to bury myself in the newspaper instead of tend to the responsibilities of daily life. That feeling of being wholly unequal whatever task life presents, however simple and achievable it may be, it is almost impossible to stop the sense of inner implosion once it has begun. Sometimes it takes an hour to ride it out, sometimes a day, sometimes a month. Only when I have emerged on the other side can I see where I’ve been and try to decipher what it was that brought me back into the light.

I observe Our Boy with autism and I cannot help but wonder if my father is lurking in the foggy netherworld that sometimes envelopes him. He inhabits both worlds at the same time and is somehow at home and a foreigner to each one in a single moment. I know that science will never draw a line between alcoholism and autism, but I cannot help thinking there is something about filling an inner void that characterizes them both. There are moments when I look into Our Boy’s eyes and see my father looking back at me, hurt, bewildered, obstinate. To see Our Boy is to view human emotion distilled down to the essence, he knows the purest joy, the greatest sadness, the deepest confusion, the wildest rage, and all of them change as swiftly as the New England weather. There isn’t any meanness and guile, though there is selfishness and manipulation, and this was so true of my father too. He wanted to achieve but he only really knew how to give and as a result he gave away most of what he had, and then some. It was only when his body began to break and the expectations were gone that he found the opportunity to seek and out and be who he was. I think that is what we will have to do for Our Boy – create for him the world where he can be. Ironically, perhaps, autism will give him that freedom, for no one expects him to be any more than he is, though we will fight his oblivion every day so that he can be free to communicate his needs to the world in hopes that they might be met.

We can try to give Our Boy what I could not give my father and what he was incapable of asking for. He wanted only to get along and be loved by those he loved, and in 20th century America that wasn’t enough. The rags-to-riches American dream eluded him, but he loved and was loved in the way that only the impenetrable Irish male can. His body and his brain succumbed to addiction and depression and when the physical pain cut through the numbness – when it was more painful to be drunk than sober – he dug his way out and started over. And lucky for him there were people there to meet him on the other side and play cards with him. When Our Boy is ready to play I will be at the table, waiting.

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