Bill Kenower's son, Sawyer, is on the autism spectrum. In July 2016, The New York Times published Bill's piece, "My Autistic Son’s Lesson: No One Is Broken." In this profile, Bill continues to share his powerful perspective and explores how autism has transformed his life as a father, husband, and writer.
Tell us about yourself and your son Sawyer.
I’m a 51 year-old writer, teacher, and lecturer, and I’ve been married for 24 years to Jennifer Paros, a writer and illustrator and just all-around great person. I’ve been the Editor-in-Chief of Author, an online magazine for writers and readers, for the last eight years. I’ve done hundreds of video and audio interviews with writers of all kinds for Author, which I have thoroughly enjoyed.
It’s been a long and difficult professional journey for me as a writer. I experienced many, many years of rejection and disappointment and confusion. It was, in many ways, my experience with Sawyer, this boy who didn’t seem all that interested in talking for some time, that helped me finally find publishing success.
When Sawyer was four he wrote a song with these lyrics: "You have to get along / But you gotta have free." It seemed like the whole human condition right there. You have to go to school, get a job, maybe get married. Get along. Life is a group activity. But you also have to "have free." You have to be yourself. What’s the point of living if you don’t live your own life? Sawyer, I believe, looked at these two often seemingly opposed requisites and chose freedom. By which I mean, he largely stopped paying attention to other people and retreated into his imagination. He was diagnosed with Autism when he was eight.
He’s seventeen now, and has emerged from that pretend world. He’s been homeschooled since he was thirteen, which was probably the second-best parenting choice we ever made. He still tells me, “I don’t want to do anything to make anyone else happy.” I love this and admire it, but it does make parenting him pretty challenging. There is no doing something – ever – simply because I said so.
What was the journey of your son's autism diagnosis? Is there anything you know now that you wish you knew then?
As I said, he received the diagnosis when he was eight. He’d been receiving special services from the state and from schools since he was about five. The strange thing about Sawyer was that he would go deeply into his pretend world, running back and forth and humming, thumping his chest and talking to himself, and you simply wouldn’t be able to get his attention at all. I could hold him in my hands, stop him from running, say his name inches from his face, and he still wouldn’t acknowledge me.
But then, perhaps a moment later, he’d emerge. He’d say hello, and make perfect eye contact – and there he’d be. Which is why the whole concept of having Autism never really made sense to me. That is, how could he have something if he could turn it on and off? The challenge, I came to learn, was that he didn’t really know how to turn it on and off. He still argues with us that he can’t turn it on and off at will even though he does so all the time. He’s not the only one, of course. I know very few adults who don’t believe they can’t help how often they drink or smoke or gamble or just feel lousy about themselves. It’s just been more exaggerated with Sawyer.
One more thing I’d like to add about the diagnosis. I watched him through a one-way mirror while he was being tested at the University of Washington Autism Center. Sawyer, I should point out, he hated tests then and hates them still now. For this test, the woman administering it would ask him to do something, he’d flap and look away, and she’d write something down on her little clipboard. This is how it went for nearly the entire test. That was the moment I really understood the futility of a lot of these tests. Sawyer was ignoring her. She wanted him to do these things, but he didn’t want to, and so he didn’t. What was the test actually measuring, other than his willingness to participate in it?
In July 2016, the New York Times published your piece, "My Autistic Son’s Lesson: No One Is Broken." In the piece, you share your personal experience with the "joining method." What is joining and how has it shaped your family?
Here’s the idea behind “joining,” which was pioneered by a guy named Barry Neil Kaufman. We wanted Sawyer to come out of his pretend world and join us. He wouldn’t. So instead of telling him to stop running and flapping and humming, we started running and flapping and humming. We joined him in his world. We spoke to him in a language he understood. In so doing, we also said, implicitly, “You’re not wrong.” Kids on the spectrum, I think, spend a lot time being told that what they do and say is wrong. Can you imagine trying to navigate life when every choice you make is called wrong? It would be impossible.
The key to the joining, however, is that you must do so without judgment. That is, no matter how much you’d like to be doing something else, you must give over to joining simply for the experience of being with Sawyer and not just to get him to stop running and flapping, which we often did when we joined him. If I joined him in frustration and impatience, then he’d simply run away from me to pretend in peace.
It’s a practice of unconditional love – or unconditional living, really. To do it, I couldn’t call one experience better than another. To do it, I couldn’t call what he was doing wrong. It had to be right for him in that moment. Just because I would like to see something change, doesn’t mean it’s wrong in that moment. It’s a subtle difference, but a critical one, a difference that I applied with my other son, with my wife, and with me. Was it really better to drink wine and talk to my wife than run back and forth with Sawyer? Was it really better to get a rejection letter than an acceptance letter? Sawyer taught me that conditions don’t really matter – it is only what I believe about those conditions that matter.
I love that your piece also gave a glimpse into your relationship with your wife, Jen. How has raising a son on the spectrum impacted your marriage?
Kids on the spectrum teach us about unconditional love. Actually, love is only love when it’s unconditional. You don’t love someone because of how much money they make or how much they weigh or because they say nice things to you or because they stop humming and flapping. You love them because you love them because you love them. You love them in the same way you want to be loved, knowing that you will not always be perfect, that you will be petty sometimes, and you will be mean sometimes, and you will be grouchy and impatient sometimes. You want to be loved not because you behave perfectly but because beneath all behavior is perfection seeking some kind of expression.
And so, sometimes my wife does not do or say things I like. Sometimes she’s angry at me, or at herself. My experience with Sawyer taught me to look past his behavior and look to the whole person he actually was. So too, when Jen and I are in an argument. I must remember to look past what she’s saying, or what I think she means when she says something I don’t like, and see the woman I love and who loves me. She’s always there, by the way. Every time.
How has fatherhood influenced your professional life?
I’m a writer. To write effectively, powerfully, creatively, and passionately you must write with unconditional love for the story you are telling. You love your story simply because you love it; you’re interested in it simply because you’re interested in it. You don’t love your story because other people praise it, or because you think it will sell a bunch of copies, or because you think it will change your life. That’s where you have to rest to write the way you most want to write. That’s where the real juice is.
I learned this being a father.
What advice do you have for other parents with a child on the autism spectrum?
They’re not broken. They’re not broken because no one is broken. That’s what my piece in the Times was about. In order to be of use to Sawyer I had to see a world without broken people. I tried fixing Sawyer, just as I’d tried fixing myself, and it didn’t work. But he sure looked broken sometimes, as did I. So the only way to help him was to see a world without broken people. No one is broken. Everyone’s doing the best they can. You’re kid is doing the best he or she can. Being human requires being free to get along. That’s how it works. Most people spend their lives trying to learn this. I believe kids on the spectrum are trying to learn it at a very early age.
Don’t fix them. Teach them and learn from them. But do not try to fix them. In fact, if you really want to help them, try to see yourself in them. Can you imagine wanting to retreat from the world? Can you imagine spending all your time in your imagination? When I felt like a failure, I sure did. In fact, the more I looked at it, the more I realized Sawyer and I were very much alike, it’s just that all his habits were more exaggerated than mine. I talked to myself; I just didn’t do it public. At least not most of the time.
They’re a lot like you, these kids. In fact, they’re trying to teach you that you are inherently perfect, that you don’t need to fix yourself, that you don’t need to fix anyone. If you can see yourself as whole, if you can understand that you’re not broken, then you’ll be the very best parent you or anyone could hope to be.