A couple years ago my son Sawyer decided that he hated all religions. Religions were an example of what was wrong with the world. Religious leaders were always telling people how to live their lives, and people who believed in different religions invariably thought that the best way to settle their differences was to kill one another. My wife and I tried pointing out all the good that religious thought and religious people had brought about in the world—the end of American slavery, for instance, was spearheaded by some of the North’s most fervently religious men and women—but Sawyer would have none of it.
So I decided to go to the source. As a part of our homeschooling we cracked open The Bible, page one, In the beginning. I hadn’t thought of it until rereading the creation story with Sawyer that everything God creates, from the light and the dark to the things the creepeth and crawleth, is good. The whole of creation, top to bottom, day and night, fish and fowl—good. Then we came to Adam and Eve and The Tree. I seemed to recall that The Serpent convinced Eve to eat from The Tree of Knowledge. Growing up in a secular family, this made sense to me, as it mirrored what I perceived as the public debate between scientists, who valued knowledge, and religious people, who valued faith. Yet in the version of The Bible from which Sawyer and I read it was not eating from The Tree of Knowledge that got Adam and Eve booted out of Eden, but The Tree of Knowledge of Good and Bad. This made perfect sense to me. As soon as I divide the world into good and bad I have created a threat from which there is no rational escape. If I divide the world into good and bad, then anything could be bad, including me. Which is exactly what happened when I started seeing Sawyer’s pretending and humming and flapping as a problem. Now this behavior was no longer simply something he was doing, but something bad he was doing. I was out of The Garden, and I hated it. Everything of value grew in The Garden, but nothing grew in the broken world outside of it. All I wanted was to be back where things could grow, including my son. In this way, Sawyer became a kind of portal into what I most wanted in my own life. To judge him was to be excluded; to love him was to return. I am in and out of that garden every day. Meanwhile, I have noticed that Sawyer no longer sees religion as the source of all that is wrong in the world. He has moved on to other issues. For a time both Obama and The Tea Party were the problem. Now it’s ISIS. I don’t know what it will be tomorrow. No matter. He’s looking for his own gate into a world where he need never worry again that what he is doing is wrong.
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When Sawyer’s preschool teacher first mentioned that we might want to have someone from the state observe him I was quite confused. He was a perfect little boy. He was talking and playing and walking. There was nothing wrong with him. Everything was okay.
She agreed with this point of view in general but she had noticed a couple things that might be a problem once he started kindergarten. So the woman from the state came with her clipboard and her pen and observed him. Next came the meeting with a Group of Experts. Everything was not okay. Sawyer didn’t play other children, didn’t respond when spoken to, didn’t pay attention. Didn’t, didn’t, didn’t. My wife and I now found ourselves trying to solve a problem we had not until recently believed existed. To do so, we had to first convince ourselves there was indeed a problem. The best way to achieve this was to pay exclusive attention to all that seemed not to be working. We had to be diligent about it. It is easy as a parent to notice only what is working. We’d done that already and look where it got us. So we noticed and noticed and noticed his troubles. We talked about his troubles, we sought experts who knew about his troubles, we read articles and books about troubles. It was a troubling time. In fact, his troubles only seemed to increase. We didn’t want trouble. We loved him and we wanted him to thrive and troubled things do not thrive. We only wanted everything to be okay as it once had been. Our search to end Sawyer’s troubles eventually led us to Barry Kaufman’s book Son Rise, which described his journey with his son Raun, who had been diagnosed with severe autism in the late 60’s. It was from Kaufman that we learned about joining, the practice of doing whatever the child does. Instead of demanding he leave his imaginary world and join us, we would choose to join him by any means we could. Yet you cannot join someone if you believe what they are doing is a problem because to join something is to continue it and no one wants problems to continue. The only way to join Sawyer was to not see any problems at all. Everything had to be okay. Nine years later I am still remembering that everything is okay. Do I see problems? I see them everywhere. I see them on the news and across the dinner table and in the mirror. Every problem I perceive asks the same question: Are you going to try to correct me, or your perception of me? Both options have the same objective—a trouble-free world. One requires me to create that world; the other merely asks me to live in it. About two years ago my father, then seventy-seven, announced that he was—or had, or, well, the verb is uncertain, but he had self-diagnosed himself as being on the autism spectrum, specifically living with Asperger’s Syndrome. If you’re unfamiliar, Asperger’s is like a genre of Autism whose primary characteristic is a difficulty understanding other people’s emotions. There other characteristics as well, like turning conversations into monologues about facts and having difficulty maintaining eye contact, but all of these tertiary traits stem from a fundamental relational disconnect.
It was a great relief for my father to learn about Asperger’s. Socializing had never been easy for him. I had observed him from my son’s vantage try to succeed in a conversation the way he succeeded at his board games and spreadsheets. A son’s view of his father is always obscured by his own desire for that man’s success and approval, but I saw enough to know that in learning about Asperger’s he was finally allowed to drop the story of his own failure. He was who he was, and socializing was challenging not because there was something wrong with him but because he was a part of group better suited for analysis than improvisation. He was a like a fish who had just learned why climbing trees was so difficult. Still, there is the question of that verb. To say he has Asperger’s suggests that he isn’t really a fish but a one-armed monkey who did his best with an unfortunate situation. I don’t buy it, and not just because he’s my dad. A surprising challenge of meeting an Asperger’s kid is that he isn’t easy to like. He seems to be ignoring you. He won’t make eye contact and there is no emotional acknowledgement. The kid seems insensitive, as if he doesn’t care at all about other people, only himself. What’s to like? Yet I had sometimes been called insensitive when I was younger. In fact, when I was nineteen a girlfriend told me that she dated me despite the fact that I wouldn’t look her in the eye. It was the first anyone had brought this habit of mine to my attention. Sometimes looking someone in the eye felt as if I was seeing and showing too much. There is a nakedness in that moment, as the eyes have no words or gestures to disguise desire, love, fear, or disinterest. It is an intimacy that I find tolerable only if I can trust that there is nothing to be frightened of—no uncontrollable emotional train I must ride—within me or the one with whom I am sharing that glance. So I do not see people like my father or my son as insensitive, but as just the opposite. I resolved at nineteen to begin looking people in the eye again. It wasn’t easy at first, but at forty-nine I’ve now more or less got it. Though I still forget from time to time. Trusting in what waits within a stranger’s or even a loved one’s eyes is like trusting in life itself. I must remember to see kindness before it shows itself to me, even in those who turn their eyes from mine in search of a safety they cannot lose. Here is a little story about my oldest son, Max. Once upon a time there was a boy who was an extremely good student. He received nearly straight A’s in high school without studying, spent a couple years on the debate team, scored unnecessarily high on his SATs, and was one of two children chosen to address his graduating class at commencement. Oh, and he did a stand up routine at the end-of-the-year talent show. He killed. The End. Not a very interesting story, is it? Parents, their children, and their children’s achievements form a kind of Bermuda Triangle of storytelling boredom. There is absolutely nothing in it for the audience of such stories except to say, “Congratulations.” Stories are an opportunity for the artist and audience to meet in their imagination, a meeting that is achieved, in part, by a sympathetic protagonist with whom the audience can identify. If told well, the audience becomes the protagonist, suffers and rejoices as he would, so that by the end the story is as much about the one hearing it as telling it. A better version of the story about Max, then, would be this: Once upon a time, Max was an extremely resistant student. Though he was mentally quick, he hated doing his schoolwork. Every night was like a hostage negotiation come homework time. He didn’t get along particularly well with his teachers. And then, somewhere around 5th grade, it all changed. He did his homework without a word from us. He got along with his teachers. From that moment forward, school was more or less easy. It was all very mysterious. Later, he explained that he saw that school was just a game. There were certain places he wanted to go in his life and he understood that playing this game called school could help him get there. So he stopped fighting the system, rowed his boat with the river instead of against it, and now he’s off at college still enjoying school. The End. Which brings me to my other son, Sawyer, who was not such a good student. One of the first hurdles I had to overcome with Sawyer was his lack of achievement. Like a lot of kids we place on The Spectrum, he seemed to excel at nothing. How was I going to identify with him and relate to him and claim him as my own if all he did was fail? At the time he was first diagnosed, I was already feeling like a failure because I couldn’t seem to publish a book. The temptation was great to keep him at arms length, so to speak. Yet one of the reasons I so dislike the words “autism” and “spectrum” is that they place these children in a different category than the rest of humanity, a kind of verbal quarantine, where we can help them, and maybe even cure them, but not see ourselves as like them—unlike those other children who are batting cleanup, or singing in the school play, or getting honors. Storytelling has taught that humans do not actually meet in achievement but the journey to it. Children we call on the spectrum are more conspicuously about that journey than almost anyone I know. So of course I was like Sawyer. How was I not like someone who was asking so loudly, “How do you be human?” It was the same question Max was asking as he fought against school. It is the same question we are all asking, from richest to poorest. Every story contains a mystery to which the reader is drawn. Life’s mystery draws us in as well, as we search together for the answer that is always, Love. I welcome feedback and questions. Feel free to post any comments or questions below, or contact me directly.
As I mentioned in an earlier post, the only practitioners with whom my wife and I worked with any enthusiasm were Anat Baniel and her colleagues. As much as I admired her book, Kids Beyond Limits, I don’t know if we would have decided to spend the time and money to fly from Seattle to San Francisco to work with her directly if not for something she had said while I was interviewing her for Author magazine. I was writing No One Is Broken at this time, and mentioned that there is a great temptation for parents with kids on the spectrum to want to fix those children. “There is nothing to fix,” she said, quite matter-of-factly. “You cannot fix what isn’t there. Human beings grow. Human beings evolve. You have figure out a way for (the human) to grow successfully—you can’t fix it.” That did it for me. I didn’t always know how to best to parent Sawyer, but I did know this: I can’t fix what isn’t broken. Whatever strategies, philosophies, or approaches we tried would have to be based on the understanding that no one needs to be fixed. Anat was the first professional who was so clear that her work was about teaching and not fixing. It is a profound distinction, especially given the types of children with whom Anat sometimes works. Sawyer’s challenges were entirely emotional. Even if you are someone who has never received a “special needs” label, it is easier to see yourself in a child whose behavior is erratic than a child who cannot walk or talk. Nearly everyone has at some point behaved erratically and understood that that erratic behavior was an expression of their erratic emotional climate, a climate that, like the weather, is defined by change. But not everyone cannot walk or talk. Except that no one is born knowing how to walk and talk. We all had to learn to do those things. We do not call an infant who cannot talk broken. Yet when a person reaches a certain age and has yet to learn to do something – whether it is walking and talking, or moving out of their parents’ basement, or publishing a book – it is tempting to call that person broken. They would like to do these things, but they simply can’t, the same as some people can’t high jump seven feet. That’s life. That actually isn’t life. Life does not care what we can and cannot do, it will seek its full expression through us whether or not we can talk, or live on our own, or publish a book. Life cannot fail. Sometimes Anat teaches a child to walk, but sometimes she does not. The child that does learn to walk has gained another means of expression; the child that doesn’t will learn to express himself or herself in other ways. That is life. The only failure I have actually known in my life were my failed attempts to fix what wasn’t broken within myself. Yet the pain I sought to relieve in my fixing was only the discomfort that comes from resisting life’s full expression by deciding ahead of time how that life should be expressed. It was never my job to determine what form that expression must take, but simply to allow it through. In that allowing, I remember who I am, and life and I are in agreement once again. If you like the ideas and perspectives expressed here, feel free to contact me about individual and group conferencing.
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William Kenower
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. Archives
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