Metaphors abound for the way an autistic child relates to the rest of the world. We only have glimpses of what it's like to live inside an autistic person's mind, although those glimpses have become more and more articulate as more autistic people turn to computers to express the thoughts that tangle behind their tongues, their ideas upended by the complex distraction of the listener's face. We try to understand, but in the day to day, the best we can do is try to translate it to our own frame of reference.
It's like a radio that's tuned to the wrong frequency. It's like she's living in another world. It's like he thinks in pictures while we think in words. It's like she speaks another language. It's like (for the Trekkie parents of autistic kids) he's living in an alternate universe that occasionally intersects with ours.
My personal favorite came from an unexpected source, the Steven Spielberg film "Hook". One of the less memorable adaptations of J. M. Barrie's book Peter Pan, it has one scene that has nevertheless imprinted itself on my mind. Peter Pan, now the unthinkably adult Peter Banning, has forgotten his childhood self, and even a visit to Neverland does nothing to jog his memories. He is weary and lined, jowls losing their fight with gravity, and the Lost Boys can see nothing of their hero in this suited businessman. One child, though, stands before the kneeling Banning and presses his hands into the unfamiliar face. He frowns as he presses Peter's nose, his chin, his forehead, trying to find traces of the boy who was never going to grow up. He pushes his little hands against the lined cheeks, smoothing out the years, and suddenly exclaims, "Oh, there you are, Peter!" It was not just the coincidence of the name that made this scene resonate with me long after I watched it.
All of these metaphors work, in a way, and on some days all of them fail, as metaphors inevitably do. Some days, no comparison is adequate for the wrenchingly lonely sensation of sitting in the sunny front yard with your son two feet away from you, and realizing that you have no idea what he's thinking, where he is in the sensation-rich wilderness of his mind.
But some days, for a brief startling moment, contact is made. Tonight, as always, I helped Peter to undress. I changed his diaper and sent him off to try to use the toilet, over his protests of "I can't, I can't, I don't have any potty in me!" I put him in an overnight diaper and helped him squirm into his plaid flannel pajamas, balancing him as he stood on the bed to pull the pants up. I usually ask for a hug, reminding him to "hug with your arms", since his initial attempts at hugging were to simply fall forward onto me, upper body awkward and tense.
Tonight, though, before I could ask for my hug he began to stroke my hair. He has done this a few times, and while an evolutionary anthropologist would have plenty to say about primate grooming activities, I enjoy these moments too much to analyze them. His face is intent, and his little hands softly stroke my hair from side to side, smoothing it away from my face. I stand perfectly still, not wanting to jar him out of this sudden personal connection. I drink in his blue-grey eyes, his long eyelashes, the curve of his upper lip (so like mine), and the nearly translucent fairness of his skin. His eyes move back and forth from my eyes to my hair, and he pets my head with an almost religious solemnity.
I have always worn my hair cut in bangs, due to the family trait of a startlingly high forehead. When Peter plays with my hair, his main focus is moving my bangs away from my eyes and eyebrows. He seems to be searching, clearing away what obscures his view of his mother, for these brief seconds trying to find me instead of looking away. Tonight, he finally moved my hair away to his satisfaction, and said in surprise, "You have a head in there!"
I had to laugh, and the connection was broken, so I swept him into a hug and said into his little pink ear, "Yeah, I have a head in there." He hopped off the bed and we were off to the bathroom for the ritual of brushing the teeth, really only a prelude to the real business of spitting water in the sink.
As we laughed and splashed through the bathroom routine, his comment kept running through my head, permutating as it went. "You have a head in there! You have a mind in there! You have a you in there!" I found myself wishing with unaccustomed intensity that I could see what needed to be smoothed away to find Peter. How much easier to smooth away his soft, silky hair with my hands, than to continue the neverending redirecting, the reinforcing, the words upon words poured upon him in hopes that some of them will trickle into wherever it is that he really lives.
Those flashes make it worth it. It sounds trite to say so, because many other parents have said the same of their children and the struggle to reach them. It has become trite, though, because there is no other way to say it -- it IS worth it. We continue to reach, to try, to talk and rub and love away whatever unseen barriers stand between us and our children, our little Lost Boys living within arm's reach.
Some days it is exhausting beyond endurance, and I wonder (deep down where nobody sees) if his world is so bad after all. Maybe I should just leave him in there where it is quiet and no one is harassing him to say it again, to try one more time. But then some nights, in looking for me he inadvertently shows me himself, that mirrored window opening for just long enough to remember why I strive: "Oh, there you are, Peter."