When we entered the neuropsychologist’s office in January, 2004, our two-year old son, Colin, went straight to the crayons, puzzle pieces, marbles, board games, and colored wood blocks—moving from one object to the next, exploring the room, stopping only to squint sideways through the vertical window blinds or at the glimmering shadows they made on the floor—all this time ignoring the stranger seated in the center of the room, the one who watched Colin’s every move and listened in silence as we catalogued our worries about tantrums and biting and diarrhea and sleeplessness and incessant chattering and the lack of eye contact. The doctor looked at us only fleetingly with a distracted courtesy, until the moment, not ten minutes after our arrival, when he declared: “He’s autistic. I’m quite certain.”
He left it—the diagnosis—floating out there, unexplained for a few seconds, then a few more, while he followed Colin’s continuing inspection of the office’s inanimate occupants. “How does it feel to you hearing that?” he asked, looking first to my wife, Maura, then to me, and back to Maura when she started to cry. Colin’s three-month old brother, Quinn, oblivious to the freight train hurling his way, slept in a car seat at her feet, his binky the only thing in motion.
“I’m being too blunt, I know,” the doctor said. “You should go through the formal testing process, of course, but it’s clearly the case.”
His hasty diagnosis galled me at first—How could he possibly know?—until I remembered the doctor’s presence in the waiting room before he introduced himself. I didn’t know how long he had been there observing Colin—and observing us. It was only when he had caught my eye for the second or third time that he had stepped over to introduce himself, as if exasperated that we had interrupted his observations. Then there was Colin’s tantrum when we told him he had to stop playing with the waiting room toys, and he had cried as we walked down the hallway to the doctor’s private office, crying until he caught sight of the toys within.
“Autism. Mid-level. Not severe. But not mild either.”
Maura wiped at her eyes, but I knew the diagnosis was not entirely a surprise to her. Long before I was willing to acknowledge it, she instinctively knew something unnamed was wrong. She had done her share of “field” research, talking with other parents about behaviors and symptoms. So, now, after a hundred “Oh, he’s fine! My kids do that” conversations with would-be comforting friends and family, hearing the diagnosis brought her both fear (What does this mean for our life?) and unexpected relief (“Aha. It was something after all!). She leaned toward the doctor, asking, clarifying.
The doctor’s tone of certainty waned as he moved from diagnosis to treatments and outcomes. And we heard, not for the last time, about how outcomes ranged from inevitable institutionalization to symptoms all but vanishing except to the autistic individuals themselves.
“I can’t tell you how this is going to turn out. The best we can manage is an eclectic approach,” he said, offering possible behavioral therapies, experiments with diet, medications to ease symptoms. There were no formulas, no certainties—each autistic child being unique—few accurate predictions at all.
Maura had pushed for a meeting with this doctor, impatient with being put on a two-month waiting list at the children’s hospital. When a friend who knew the director at this children’s clinic said she could arrange a consultation, Maura jumped at the chance. “Let’s do it. Let’s find out what’s going on.”
Colin now opened the doctor’s desk drawer, pulling out a glass prism, a paperweight perhaps, which he placed flat on the desk. The light from the window lit up the glass in a rainbow pattern across the desktop. Colin leaned in close, his eye almost touching the prism. He hummed to himself, reaching toward the tinted reflections as if he could pull one into his pocket. The doctor stood up and walked toward Colin slowly, looking back over his shoulder at us: “Okay, I don’t have to tell you that Autism is more than complex. We’re all still trying to figure it out, experimenting. Not everyone will admit that. I know that’s not what you want to hear, but it’s the truth.”
The doctor kneeled next to Colin, who still ignored him, and then placed his open hand like a wall between Colin’s face and the prism. For the first time, Colin looked the doctor full in the face, a second, only a beat, before standing on his tiptoes to see over the doctor’s hand. “Mommy! The triangle. I want it.” He reached, but the doctor closed his hand over the prism.
“Do you like the light, Colin? Do you want to see it again? I’ll show it to you,” the doctor said, his face close to Colin’s, trying to get between him and the object. Colin struggled to see around him.
“Yes, light triangle,” Colin said.
The doctor lifted his hand and moved the prism back toward Colin, who resumed a contented humming, looked again through the prism with each eye for a few seconds, and then headed toward a basket of rubber balls. The doctor, still kneeling, smiled back at us.
“I won’t tell you this is going to be easy. But your boy is talking and you can build on that. Some of these kids never say a word,” he said. “Look at the way he’s trying everything. Many autistic kids I see in this office would have gone no further than those marbles or blocks over there, lining them up over and over again.”
Maura continued with her questions: How do we give him the best possible chance? How can we help him adapt? Is this our fault? I observed that the doctor chose his words with a lawyer’s caution, but I couldn’t hear what he was saying. I watched the scene as if from outside the room. This is how we’re different, my wife and I: Before I can ask questions, make plans, or take action, I want to know what I can’t know. I want to know what the skydiver knows.
My nephew, who is training for Special Forces, told me last Christmas about his thousand-foot skydives: the deafening wind, the ground racing up in the seconds before the chute opens, the fight to resist panic, especially the primal urge to release the auxiliary parachute, which can get you cut from the roster. For those who stay, after a dozen jumps, or several dozen, the terror dissipates. The ritual-taught intelligence of the body takes hold and brings unexpected freedom—an ecstatic joy and confidence.
On that day at the children’s clinic when the doctor said, “Your son is autistic,” I found myself on a steep precipice, suddenly hungry for a particular kind of knowledge—the intimate, often unspoken knowledge possessed only by those who have just been where I am about to go. Like the skydiver about to leap, I wanted to know, before I jumped, what the one who jumped seconds before knows: I’m going to survive! Long before he expects to, before his chute opens, he falls from terror into relief. In the neuropsychologist’s office I was still refusing to jump, while the night diver floated down, catching his breath, the stars above him like countless matches now struck. He’s alive. The man floating down, parachute spread wide above him, is not the same man who jumped from the plane seconds before.
Parents facing a child’s autism diagnosis—or innumerable other crises—will not react the same way. Variation and uncertainty abound. But it would be a mistake to ignore how much common ground we do have. Not only those of us with autistic children, siblings, cousins, grandchildren, or friends, but all of us who raise children, period. Any of us who have faced sudden loss, or who have felt utterly isolated by our difference—whatever it may be—for an hour or a lifetime. And those of us who are changed by the so-called disabilities of others and ourselves. Is there anyone who doesn’t fit in there somewhere?
The particular knowledge I hungered for in those first moments had little to do with treatment options, how we would pay for it, what causes autism, or who was to blame. All this would come later. What I hungered for was the intimate details—good and bad—about what our nights and our days would look like. What to accept and what to hope for. What we might expert tomorrow, next month, next year, or in five years. After the diagnosis I saw my son with new eyes: What does it really mean to be different in this way? What does it feel like to him? What can I learn from my autistic son that can be learned no other way? This knowledge was out there, but elusive.
In the weeks after the diagnosis, we heard a lot about what to be afraid of: the widespread ignorance of well-intentioned people (including your own family, your close friends, and you yourself), bureaucratic government programs, schools and teachers drained of compassion and resources. “It’s not a compassionate world out there. It’s all about the money,” one doctor said. “The two or three hours a week of speech and occupational therapy they’re going to offer won’t be near enough. Not even close,” an exhausted mother told us. From all, we heard the crying urgency to act—now—in spite of the barriers.
I heard next to nothing about what to anticipate with wonder. This turns out to be the biggest secret of all: that there are miracles ahead. My first hint came from a friend I hadn’t seen in years, the only person I knew at the time with an autistic child. I called him because I knew he had done everything in his power to help his daughter, sparing no expense or effort, and that she was emerging—a word I would hear a lot—from the isolating autistic symptoms that limit so many. We met for lunch, and my friend warned me, along with everyone else, that it would be very difficult—with rollercoaster ups and downs all along the way. He jotted down names of immunologists and neuro-psychiatrists and sleep specialists. He talked about mercury poisoning, chelating, immune system disorders, nutritional supplements, and behavioral therapy. But what I remember most is something he said almost in a whisper. He even looked over his shoulder and leaned in close to say it: “You won’t understand this now, but I need to tell you: My daughter’s autism is the most amazing experience I’ve ever had. It has changed me and my family, so completely changed who we are, that I can’t imagine our life without it.”
I started to understand that I would have to begin with this and it was enough. I would begin with what I could only be told.
If I could have had some kind of glimpse of the future to bring hope, it could have been something like this–Colin in the school Halloween Parade. Notice the elf just behind the teacher. This is a happy boy. He’s not worried about anything but having a glorious good time: http://www.youtube.com/watch?v=QwwUF3d6MSg&feature=related