Shortly after my second son, Sawyer, was born, my wife, Jen, began experiencing some discomfort in her abdomen. Several trips to the gynecologist yielded no improvement, so an ultrasound was scheduled. On the day, I sat in the waiting room with my infant son while she was examined. As a young father, this was a familiar experience. Between my wife, while she was pregnant, and then my sons, there were many trips to doctors’ offices where I found myself waiting and waiting, until I learned that everyone was fine and everything was going to be okay.
Eventually Jen emerged from the examination room and sat beside me with a heavy sigh. “They found a growth on one of my ovaries.”
She nodded. A growth. In my imagination, I quickly diagnosed this growth. It was cancer. And she was going to die. And I was going to raise my sons alone. I began picturing my life as a single father. It wasn’t going to be easy, but I would adjust, and everything would be okay.
I had just finished my trip to the future when her doctor appeared and began explaining what an ovarian cyst was. Apparently an ovarian cyst isn’t cancer, but it can cause discomfort in the abdomen. I was still a little disoriented by it all, and once we’d thanked her doctor, I turned to Jen for clarification. “So you’re not going die?”
She laughed. “Not yet.”
Seven years later Sawyer would be diagnosed with autism. There were times during that period where I felt as if I spent half my waking life in waiting rooms. It was appropriate, I suppose, because the parent of a child with this diagnosis can live in a suspended state of unending waiting – not for news from this doctor or therapist or teacher, but simply waiting for The Future, where autism’s true threat always lies.
Because even though school was difficult for my son, and even though getting his attention at home could be difficult, and even though he wasn’t making friends the way other kids were making friends – ultimately, in the present moment, everything was okay. He wasn’t unhappy, at least not any more than I was sometimes unhappy or his brother and his mother were sometimes unhappy. In fact, he was often quite happy; he just found most of that happiness in the realm of his constantly active imagination.
It was the very realm in which as a writer I’d found such pleasure, but as a father I often found much misery. Sometimes I would ask my imagination what The Future would look like for Sawyer, and because my imagination could not easily draw a line between what I was seeing in the present and what I wanted to see in the future, it showed me a dystopian world where for some reason Sawyer had learned absolutely nothing about how to get along with other adults. If I looked too long at that world, I would begin panicking in the world where I actually lived, as if that future had already arrived. I needed to do something immediately because everything wasn’t okay.
The best thing I can do at these moments is always nothing. Every time I try to predict the future I am wrong, and I am never more wrong than when I predict tragedy, a dismal future where everything is not and never will be okay. The fear I have felt for my son is always quite real, but the cause of that fear is always imagined. Not sometimes – always. Just as when I take the time look around at when and where I’m actually living, I eventually notice that everything and everyone are always okay.
I coach, teach, and generally talk to a lot of writers. It is easy to view what we write the way we view our children: but for us these stories would never exist, and once we have raised them from a mere idea to a fully formed book, we send them out into the wide world to be read and have a life of their own. An author can no more control what a reader thinks and feels about the book he’s written than a father can control what his son’s friends think and feel about his son.
Authors worry as much if not more than your average parent. A common source of an author’s worry is the belief that it is possible, somehow, to perfect what he has written. Not merely improve, mind you, but actually perfect – choose the scenes, sentences, and words for which there is absolutely no alternative. There is no peace possible within this thought. Every book could be rewritten and rewritten until the end of time.
Children, on the other hand, are born perfect. To hold a newborn, who cannot walk or talk or conjugate a single verb, and view that little person as anything other than perfect requires an effort of the mind. In fact, the newborn’s perfection is beyond the mind’s understanding. The mind, ultimately, is responsible for life’s details, for distinguishing one thing from another so the heart can choose its preference. The newborn’s perfection is felt rather than understood in precisely the same way we feel our own perfection. To behold this perfection is to know peace, for there is nothing to be done or changed or corrected; everything is already as it should be.
It is easy to look in the mirror, as the mind counts the lines on our face or measures our nose and eyes against other noses and eyes, and forget that perfection, just as it is easy to look out our window and see a world of grossly imperfect people. We measure the violence and cruelty against what we have felt in our most peaceful moments, and the world comes up short. Children can be such a balm against that heartbreak. The parent can watch a child learn to walk where it wants to walk and say what it wants to say from within the perfection he first beheld before the child could make a single choice.
I have sat beside other young parents in the waiting rooms of neurologists and speech therapists and occupational therapists and felt the heartbreak for which we were unprepared. Though we may not have known it when we chose to have them, these children came in part to heal what we had seen in windows and mirrors as we made our way in the wide world. And now here we are, feeling robbed of the peace we’d barely had time to remember. In the place of this peace are all the choices we must make to somehow correct what appears to have arrived imperfect.
The best choice I have ever made for my son was to see him as perfect again. He did not always make this as easy as he did when I first held him, but the peace I have chosen since then has sustained me in ways that first perception could not. I know that words like peace can sound like empty platitudes against the hard, diagnostic reality of words like autism, but that is only because true perfection remains unbelievably constant. It will never be found within the words or careers or doctors we choose, but is rather the womb from which those choices are born.
When my son Sawyer was three he wrote a little song whose only lyrics were: You have to get along/But you gotta have free. It struck me at the time that he had captured the entire human condition in a single couplet. We all have to get along with other people. We have to have relationships and go to school and have jobs and generally be a part of society. But we also have to be free. We have to be who we are, love what we love, think what we think, and do what we do, regardless of what those other people we’re trying to get along with might want of us.
It can often seem that these two imperatives are in conflict. Most people, in my experience, choose to get along. Most people don’t want to get booted out of the tribe and sent to hunt alone on the savanna with all the hyenas and jackals. Sawyer went the exact other route, a choice for which he eventually received the diagnosis of autism. Behaviorally, this meant he spent a great deal of time in a pretend world where he could not be easily reached by other people, including, sometimes, his parents, and almost always his teachers and classmates.
At its worst, when he was exploding at school and hardly speaking to us at home, it seemed as though he was afflicted with this thing we’ve named autism. His behavior seemed so out of place, and it caused such disruption, and was the source of so much unhappiness in so many people’s lives – including his – that it had to be a disease, for who would choose this? Who would choose to suffer?
No one, of course, but we all still do. Autism, to me, is not a disease or a condition but a strategy to deal with the universal and endless challenge of being human, of getting along and having free. That it is a strategy developed by young children still learning to play this game we’ve all invented means it can look a little weird, and frequently leads to consequences the children had never envisioned.
But in this way what could be more human than autism? Who hasn’t at some point developed a strategy to alleviate suffering that has only led to more suffering? I get nervous, so I choose to smoke; I feel lonely, so I marry the first person who’s nice to me; I want my father’s approval, so I join the family business rather than pursue a career I love. The list goes on and is as varied as people themselves.
Which is why I don’t believe in broken people and why every attempt to fix my son failed. Sometimes we offered him other strategies, but mostly we changed his environment, meaning we changed how we talked to him, and how we listened to him, and eventually pulled him out school. This seemed to be the best way to help him choose something different. By and by, his strategies changed, just as mine have changed over the years.
I understand that there are people we call autistic who do not speak at all, and who cannot seem to care for themselves. I understand that if you are the parent of such a child, it can seem that your life is beset by tragedy. There were times I felt this way myself; except the tragic view of life is useless to me. It is a belief in the end of something that is still continuing. A strategy is nothing but a choice pursued, and as long as I remain alive I must make choices. It never ends. The darkness I perceived in my blackest hour was the end, not of life, but of the viability of some old idea of it.
When I was thirty-five I sent a copy of my third novel to my father. He emailed two days later saying he was eager to talk to me about it. I called him immediately. “Well, I think it’s the best thing you’ve ever written,” he said. “And I think you’ll never be a success as a literary writer.”
Stunned, I staggered my way through the rest of the conversation as if I had just found out I had cancer. I hung up and considered never talking to him again. I called right back instead, and told him – as a father of two sons myself now – that you never tell anyone, let alone your son, that he won’t be a success at something. You just don’t do it. We talked some about looking for other people’s approval, and I ended the conversation deciding I wasn’t done with him after all. But I was left with a question I had asked of him many times in my life: How could he not know never to say that?
It was ten years later and we were on the phone again and the conversation turned to my sister. “She was always smart,” he said. “But more importantly, she’s also psychic. I’m sure of it.”
And for the first time in my life, I thought, “So are you, Dad.”
Though I didn’t mean psychic in that he could see ghosts or know what card I’d drawn. Instead, it was an intense sensitivity to the emotional quality of whatever was being thought nearby him. It could make hanging around with him a little unnerving. If I thought it, he would mention it somehow. Until that evening, I had always thought he was insensitive; but it was just the opposite. Some of what I had called rude was just him turning his back mentally on other people so as not to ride their emotional train.
Then, three years ago, my father, at the age of seventy-seven, made an announcement. “I’ve figured out the reason I am the way I am, Bill.”
“I have Asperger’s syndrome.”
He’d been doing some reading and the pieces all came together: the discomfort in social situations; the tendency to monologue rather than volley back and forth in conversation; the preference for facts over feelings; his love of numbers and his frustration with art; his discomfort with ambiguity and his love of rules. He wasn’t just Asperger’s, he was classic Asperger’s.
It was a great relief to him. “What is wrong with me?” was a question that had followed him most of his life – as it does most of us, I think. Now he had his answer. There wasn’t anything wrong with him. He was just Asperger’s. This is how people with Asperger’s behaved. He was behaving exactly the way an Asperger’s person should behave.
In my experience with my son, who was diagnosed on the autism spectrum ten years ago, and all my life with my father (who has perhaps accurately self-diagnosed himself), I no longer believe these words – autism and Asperger’s – refer to something anyone can have. They are just words used to describe a collection of behaviors we once believed inhibited a person’s capacity to thrive.
I do believe, however, that no one – not my father with his psychic sensitivity, nor my sister, nor any medium or doctor or scientist – can know the future in its inevitable wholeness. I’ve tried my hand at this kind of prediction and I’ve been wrong every time. I was wrong when I predicted doom, and I was wrong with I predicted glory. The only time I’ve been right about life is when I’ve seen that there is never anything wrong with it or anyone.
I love the work I do, which is to write and talk to people about how to make something on purpose. These days I mostly talk to people who are writing or who want to write because a blank page will tell you all you need to know about how responsible we really are for the world we live in. And for writers, the single greatest obstacle to an effortless, pleasurable, profitable writing experience is this thought: What will other people think of it?
I know this because I spent about twenty years writing into the headwind of that unanswerable question. To write without that question is heaven and to write with it is hell. I was reminded of this the other day when I slipped and found myself asking it again. Soon I was feeling the hopeless, life-draining vertigo that comes every time I try to create something to meet other people’s expectations. I knew this feeling intimately. For twenty years, it was what I called normal.
On that day, I did the only thing I knew to do, which was to quit writing and let the feeling pass. As I began returning to myself and life seemed worth living again, it was easy to view my little slip as a narrow escape from Hell. But for my awareness I’d be there still, trapped in a world without happiness. One must be vigilant, tend the fires our heart, lest the world go dark again.
Except here’s the truth: though I would not want to go back to that Hellish place, I do not know how I would be able to do the work I’m doing now without the twenty years I spent there. The experience of trying and trying and trying to create something that will please other people has been invaluable as I write and talk about creating things without thinking about other people. It is the source of my authority.
It is easy for me to believe this same vigilance must be applied to my son Sawyer. But for my attention our world could become a science fiction dystopia, a hellish place where he never thrives because he never learns and changes. This vigilance is unnecessary for two reasons. First, everyone learns and grows. It doesn’t matter what label you have or haven’t received in your life, you will learn and grow. It’s what humans do, whether they want to or not.
Second, somewhere in the future a flower I cannot at the moment perceive will bloom for Sawyer, a flower whose roots were sown in all the turbulence and uncertainty of the present I can perceive. That I wish to see and hold that flower now has been the suffering of my life. Let me see the prize so that I might know the game was worth playing. The game is always worth playing once I allow myself to play it. All the prizes I’ve received in my life have been lost or forgotten, and the still the game goes on. The game does not recognize victory or defeat, it just goes on and on, with no boundaries, and no clock, just the field and all the equal players.
I am the author of Fearless Writing: How to Create Boldly and Write with Confidence, and Write Within Yourself: An Author's Companion. Learn more here.