“My Turn” column,
September 1,1997

How passersby see my autistic son’s antics is making me change the way I see myself.

I am walking down a busy Chicago street with Walker, my autistic 11-year-old son, and people are staring at him. He’s a boy blessed with terrific good looks–tall and straight, with big dark eyes, glossy hair and a movie star’s smile–but this isn’t what’s turning heads.

Walker isn’t actually walking down the street; he’s running and somehow skipping at the same time. And he isn’t talking to me; he’s loudly singing “Jingle Bell Rock,” though this is the middle of July. And he isn’t, like me, trying unsuccessfully to look everywhere but into people’s eyes; he’s looking and smiling directly at everyone he passes with his fingers in his ears, his elbows flared out on either side. And, further baffling the bourgeoisie, he occasionally stops, shouts, spits twice and pull up his shirt.

Although I’m secretly proud of every bit of this sidewalk routine of his, I’m all to aware of the faces of the people we pass. Some smile, even laugh appreciatively, at his obvious joy. Some nod to me sadly and knowingly: “Ah, I know how hard your life must be,” they seem to say. Some flinch in exaggerated horror as though from some ghastly space alien from Warner Brothers. Others are cool, spot him far off and pretend not to see him when they pass. Still others are so used to such surpassing weirdness in the city that our little show comes nowhere near their threshold of surprise.

One reaction, however, is more puzzling to me than all the others. I have come to think of it as “The Look.” The passerby’s’ face becomes still and thoughtful. The eyes become narrow, like those of the cunning psychiatrist in an old movie when he asks a patient what the inkblots look like. A hand goes up to the lips and shifting into field anthropologist mode, the eyewitness stops and stares and nods silently as though making a mental note to write this one down in the journal. It’s a locked-on-target look. A piano falling onto the pavement nearby wouldn’t jar the stunning logical processes at work.

Having been upset by The Look about a thousand times, and being something of an amateur field anthropologist myself, I have often asked this question: “why do these people act this way?” The best answers that I have been able to come up with are these:

(a) They are heartless and rude and should be tortured in some hideous way for upsetting a really nice father.

(b) They are ignorant and think that humans come in solidly “normal” and “abnormal” forms and have no doubt about what kind they themselves are.

(c) They saw the movie “Rain Man” and are now experts on autism.

(d) They are fearful and are trying to achieve distance from a scary sight by trying to regard it as a rare scientific phenomenon.

(e) They are curious, as the father would be too, in their situation, at seeing a normal-looking boy acting strangely.

(f) They aren’t even aware that they have an expression on their faces and actually feel sympathetic toward the boy.

(g) They really are psychiatrists, and their work is a big help to humanity.

Which answer I choose is largely dependent on my mood. If I’m feeling defensive and hypersensitive (most of the time), I gravitate toward letters a, b, and c. If I’m feeling wise and magnanimous (not very often), I go for letters d, e and f. And if I’m feeling lighthearted (once or twice a year), I amuse myself with variation of g.

But I know that I can conjecture forever and never really be sure what The Look means.

One thing I am sure of is the look on Walker’s face. Unable to talk normally, he deploys a heavy arsenal of expression and movement to communicate. The beaming smile, the direct gaze, the skip-running and shout-singing, even the vigorous spitting–all of it–tells me Walker is working his audience hard. “Here I am! Look at me! I’m having fun! Aren’t you impressed?” The message goes out, and some people, remarkable, seem to pick it up. Most, understandably, do not.

But what about my face, my look? Inside the house I do a fair job of attempting to see the world as Walker sees t and understanding him as far as possible on his own terms. Thus a game of catch is, for us, not a Ward and Beaver experience in the backyard. Performed Walker style, catch is an “extreme sport,” with rules that are reinvented by him daily. Currently the game must be played in the house while Walker jumps wildly on his exercise trampoline, and there must be loud music playing, and he must catch the ball and throw it back while airborne. At unpredictable moments, Walker must leap off the trampoline and dash in and out of the room. The one unvarying rule is this: Dad must never stop paying attention. The result is that I long ceased aching for the “normal” game of catch and learned to love the in-house version we share.

At home, I stretch my notions of the “appropriate” to accommodate Walker’s ideas on : a bedroom (the dining room, light on); breakfast, lunch and dinner (cooked spaghetti, no sauce), and entertainment (every morning, the video of “The Wind in the Willows”).

When I step outside the house, however, a different, less noble point of view grips me, and I start to speculate needlessly on how outsiders see my son. Lost in a fog of anger or avoidance or criticism, I must present an uninviting picture for him and world to look at. Why shouldn’t passersby stare at the friendly son when the father’s face is cloudy with conflict and questioning?

So I’m working on my look. I’m shooting for, at minimum, a near-frequent smile. I want to face the sidewalk parade as Walker does, with joy and hope and most important of all, with a saving sense of fun.