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 was having coffee the other day with a writer I’d recently met at a conference. We were having a great conversation, as often happens when two people who share so many interests and beliefs get to really know one another for the first time. I was feeling particularly bouncy that day, and I found I was talking quickly, trying to keep up with the ideas that came as fast as she or I finished the last one. In the middle of one particularly rapid back and forth she stopped me and asked, “Are you ADHD?”
“ADHD. You’re zipping from one idea to the next. I can keep up, but you move really fast. I was wondering if you have ADHD. I have ADHD.”
“Not that I know of.”
I am fifty years old, and this was the first time anyone had ever suggested I had something. I knew her question was more commiserative than diagnostic, but I found it disorienting. For a moment I began picturing myself not just as Bill, but as Bill plus this thing that, by no will of my own, could control my behavior. By this understanding, no matter how we parse it, to have this thing meant I was a little less free.
Which is why I have never said my son Sawyer is autistic. I sometimes find myself needing to quickly explain to someone why we homeschool him or the particular nature of his challenges, and I’ll say he was, “diagnosed on the autism spectrum,” but even this feels dishonest. It places him in a special category that I don’t believe exists, a category that doesn’t serve him or me or the person asking about him. If a special category exists for Sawyer, then such categories conceivably exist for us all.
Last year a young man approached me after I’d delivered a keynote speech that included a brief story about Sawyer. He wanted to ask me about writer’s block and his concerns over rejection. As we talked about the nature of thought, and how difficult it is to write while worrying what other people think of us, he mentioned that he had once been diagnosed with Asperger’s Syndrome.
“Is that right?” I said.
“Yes. But I don’t deal with that any more.” He waved his hand as if dismissing it. “I’m done with that.”
This seemed exactly right to me. I know labels and diagnosis are supposed to be useful. Someone is doing something we don’t understand; sometimes that someone is us. We give that someone a label and now we can say they are doing this thing because of what of they have. Yet I decline any explanation for what I do other than the exercise of my own free will. That I am not always in command of those choices, that I am not even always aware that I have made a choice is irrelevant. What might look like dysfunction is only someone practicing how to live their life on purpose.
If your child is diagnosed with any sort of behavioral disorder, you will eventually find yourself sitting in the waiting room of a neurologist, or a speech pathologist, or an occupational therapist. These waiting rooms are not like those of a traditional pediatrician. For most parents, a trip to the pediatrician is little a more than a clinical celebration of their child’s growth and evolution. Sometimes there is a problem; but just as often there is not.
You would not be in the waiting room of a neurologist, speech pathologist, or occupational therapist unless you believed something was wrong. You are usually not alone in these waiting rooms. I rarely talked to the other parents while we waited. Like me, they had their own son or daughter to chase after, their own little fires to put out.
Sometimes I would play a game of picking out what about the child brought him here. Usually it was easy: the chirping noise, the repeated phrase, the blanket over the head, the outbursts. Sometimes all that spoke of the challenge was a weary concern on a mother’s face. I found I liked the variety. Plus, it was nice to be somewhere Sawyer didn’t stick out for his behavior. You really couldn’t stick out in these waiting rooms.
I don’t like doctors’ offices. The problems that bring us are so incredibly personal, and the office is necessarily impersonal. But these waiting rooms were like compassion terrariums. Gone were the ticky-tacky parental hand wringing over grades and batting averages and leads in school plays. Gone were talks of best piano teachers or advantages of private schools. All that was left us, it seemed, was this question: How will this turn out? For most of us, the model of life from which we’d grown could not be recognizably replicated in these children. So how will this turn out?
I have to admit that I liked the feeling of being around a bunch of people stripped to this essence. The rest was all bullshit anyway. I had dabbled plenty in bullshit for most of my life, and I knew from practical experience how easy it was to worry over questions whose answer would never meaningfully affect me one way or another. If you can let yourself be curious, and not merely worried, “How will this turn out?” is not such a bad question. As you wait for the answer, you inevitably find you are more open to what might come than you had previously believed. The path was not so narrow after all, as these children stray afield, leading us where we might not have otherwise gone.
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.