Many of the writing clients I work with have spent some time in workshops or MFA programs where writers gather around and talk and talk and talk about each other’s stories. All the attention in these environments is on The Manuscript. What is right with The Manuscript and what is wrong with The Manuscript? Is this sentence over the top, or stylistically daring? Should a character be dropped or a new one introduced?
Typically, these authors arrive with their manuscript in hand, ready to get to work. Typically, I will not even look at that manuscript during our first session. I certainly understand the impulse to focus exclusively on the manuscript. If this thing were what it should be, if it were polished and engaging and ready to be published, they wouldn’t need me. The problem is the manuscript. Let’s fix the problem.
But the problem is rarely in the manuscript, and is almost always within the author. It is impossible for an author to tell the story he/she most wants to tell if that author simultaneously believes no one reads this sort of story any more, or the market is too crowded, or they aren’t smart enough, or talented enough. The list goes on. Clear away these useless thoughts, and the manuscript usually finds its form.
The same is true for parents of kids on the spectrum. How easy it is to only focus only the kid, the kid, the kid. The problem is the kid. How do we get the kid to start doing this and stop doing that? What therapies should we try? Should we use drugs? What about vitamins? What about gluten? What should we do about the kid? If only I could fix this kid I could know that he is going to be all right and I could be happy.
There are nights that happiness feels like something I have necessarily deferred until the question of the kid has been answered. Isn’t this what it means to be a good parent? I have decided for myself that it is not. I cannot think of one instance where I have received a clear and enlightening answer to the question, “What should I do about Sawyer?” Likewise, all my attempts to fix him – and there have been many – have failed.
Though I am his father, I have no actual power over him. His will is precisely as free as mine. If I forget this, he will remind me. And so the best question I can ask myself is: What if no one is broken? What if I am not broken and he is not broken? What if all the people I disagree with and fear are not broken? What if no one is the world has ever been or could be broken? What would I do then?
To ask this question is to correct the only thing I have any power to correct – namely, my perception. I could no more fix Sawyer or myself than I could teach a mouse to fly. But if I believed that mouse were a bird, I might heave into the air and mourn its violent return to the earth. What a tragedy. The world of broken people is a tragic world, a world where true happiness is won through the roulette wheel of talent or genetics or indifferent coincidence. It is a world where no one is free, and extinction is the only certainty. Who would live in such a world by choice? No one, or course, and yet I must choose everyday, with every action, with every thought, where I wish to live.
My introduction to the world of “special needs” children began when Sawyer was three and his preschool teacher told us we might want to have someone from the state have a look at him. A month later my wife and I found ourselves at a table with a group of experts who gently explained to us all that was wrong with Sawyer: He talked to himself instead of other children; he did not respond when his name was called; he spent too much time pretending. On and on.
It was disorienting and disheartening for a number of reasons, perhaps the most profound of which was that all of this attention was focused solely on his behavior. It was perfectly understandable that the experts should do this. Sawyer’s behavior was what teachers and children had to deal with. His behavior was his link to the outside world, his contribution to the life we were all creating. What else was there to consider but his behavior?
Yet all I could think at the time was who among us at this table would want his or her behavior put under such scrutiny? Who at the table of adults who would never be called autistic believed that such scrutiny could tell the whole story of who we were? I recalled a day several years before when I’d brought a friend of mine to the hospital so she could have some stitches removed. While I waited in the lobby, an older gentleman stomped through the sliding doors.
“I’m here to see Lisa,” he told the receptionist. “But I have to tell you I am not happy.”
“I’ll let Lisa know you’re here.”
“The parking in this place is atrocious!” continued the gentleman. “I mean it’s really awful. It’s like you people don’t care at all about where we’re supposed to park. I must have circled for fifteen minutes. That is really atrocious. If you people cared it seems to me you might actually do something about this.”
Lisa soon arrived and shook his hand, but the gentleman wasn’t done. He started in again about the atrocious parking, and how difficult it was for him, and how long he had to look. He wanted to know what brain-dead numbskull dreamt up this scheme. Lisa, meanwhile, nodded and listened, nodded and listened.
By this time, I had concluded this man was a jerk. I can’t stand guys like this, I thought. What’s wrong with him that he has to make everyone’s life miserable just because he couldn’t find a stupid parking space? Welcome to life in the big city, buster. And how can this Lisa woman bear it? Look how patient she is. How does she do it? She must be a saint.
The gentleman’s tirade finally ran out of steam. Lisa nodded once more and touched his arm, “Okay then. Are you ready to start your chemo?”
“Yes,” said the gentleman, and followed her quietly into the hospital.
The biggest difference between three year-old Sawyer and the seventy year-old gentleman was that Sawyer could not yet tell us the story behind his behavior. And so we were left only with our imaginations and need for him to act normally. That is a potent recipe for misguided assistance. I still think of Lisa form time to time and her patient expression while she waited out the storm of the old gentleman’s complaint. What is a saint but someone who knows the story of who we really are and can see through the veil of our behavior? That is the light in which the lie of sin dissolves and we return to who we are.
Several years ago the book The Dyslexic Advantage by Drs. Brock and Fernette Elde came across my desk. The idea behind the book was quite simple: Dyslexia is not a disease but an orientation with its own inherent advantages and disadvantage. It had only been treated like a disease because A) we gave it a name; and B) parents and the therapeutic community had focused solely on the disadvantages, such as struggles with reading.
It is perfectly natural to focus on what we perceive as disadvantages. I do this all the time with myself. Something I want is not coming to me effortlessly; in fact, it may not be coming to me at all. At times it seems as if this thing that I want is all that stands between me and happiness. That being the case, I focus more and more of my attention on this desire that became a challenge that is now becoming a problem until I have forgotten all those parts of my life that are not a challenge and it seems as if my whole life is nothing but a problem in need of fixing. This is also sometimes called “self-improvement.”
Reading The Dyslexic Advantage I was reminded of a conversation I had with Sawyer years ago. His pretending, I explained, was like a superpower. It was as if one of his hands possessed immense strength. With this hand he could grind rocks into dust. Unfortunately, lacking fine control, that same hand shattered glasses whenever Sawyer tried to take a drink. Because drinking a glass of water is more common and practical than crushing rocks, this superpower was most often seen as a disadvantage. Our goal then was not “cure” him, but to help him learn to harness his power.
Sawyer was uninterested in this explanation when I offered it to him nearly ten years ago, and he is largely uninterested in it now. He is uninterested in it for the same reason most of us are uninterested in it: because he is unhappy when he runs up against those challenging parts of his life. He wants something and he cannot have it. He is unhappy that he cannot have it. He wants to be happy. What is wrong with him that he cannot have that which would make him happy? Don’t talk to me, he says, about challenges and superpowers and learning and evolution, just give me that damn thing so that I can be happy!
And I think, welcome to the human race, my son. I’m going to go out on a limb here and say that we will never cure autism or learn what causes autism because it doesn’t exist. What we call autism has spread like an epidemic because our definition of it has spread from people who would not talk or respond to touch to people like my son as we have begun to recognize the connection between the two, once too distant to see, now increasingly apparent.
Perhaps a day will come when we will all be called autistic, when we recognize within everyone the temptation to retreat from others, to turn away and avoid the glare of attention, to think only of our own needs and not the needs of others. And should that day come, just like with a fatal disease, perhaps something within all of us will die. Perhaps if we all believed we had caught autism, it would be the death once and for all of our belief in broken people.
Our decision to homeschool Sawyer was the singularly biggest change my wife and I instituted in his life. To be clear, the middle school Sawyer was attending at the time we pulled him out was doing everything possible to support him. The teachers cared deeply for him and were willing to make at times startling accommodations. It did not matter. The social environment of school coupled with the logistics of a few adults overseeing a crowd of children became too challenging to ignore.
I mention this because I do not believe it would have been impossible for Sawyer to find his grounding at school. I do not believe it is impossible for anyone to find their grounding, find their calm and their voice and their willpower, in any single environment. But it is certainly more challenging in certain environments than others. It is easier to feel at peace while at home sitting in your most comfortable chair talking to the ones you love than hiding in a ditch in the middle of a warzone.
School, for a variety of reasons, had become a kind of warzone for Sawyer, and so we brought the soldier home. Gradually, this change of environment had a settling effect on him. It was the first time I perceived that my greatest influence in Sawyer’s life, the one thing I could actually do, was adjust the environment in which he lived, to make it friendlier, calmer, and more inviting. He was not a car whose hood I could lift to adjust the wiring and change the plugs. His thoughts and feelings remained entirely and absolutely his own, a lesson I continue to learn every day. The environment, meanwhile, belonged to all of us.
Of course, as soon as I recognized this I began looking for other environmental changes. Should I buy a drum set to encourage him back into music? Should I buy him a new computer or simply remove all computers? Should I paint his room, make him more smoothies, sign him up for a social group? All decent enough questions, and all the answers would have their own minor effects. Yet none of these changes to Sawyer’s physical environment, including pulling him out of school, would have as significant an effect on him as the changes I made to the environment within myself.
I am not Sawyer’s whole world, but I am wholly responsible for my relationship with him. To love him without worrying about him, without requiring him to behave this way or that way, is to enter the very environment we are all seeking to create. What we call autism is nothing but a search for love. It is very easy to mistake it for something else, to call it a problem or even a disease. What a common misperception. Even war is a frustrated expression of our search for love, a belief that if only we killed everyone who disagreed with us, who challenged us, who looked or prayed or thought different than us, we would know peace, love’s resting position.
I must admit that there are times I resent Sawyer for requiring such unconditional love. I don’t always feel up to it. Just drink the damn smoothie and be okay. Yet I have never been anything but grateful for those moments when I have found unconditional love within myself. To find it is to end, if only temporarily, my ongoing war with life, to find allies where there had been enemies, to find acceptance, in fact, for all that there is, including me.
I welcome feedback and questions. Feel free to post any comments or questions below, or contact me directly.
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.