by Frederica Mathewes-Green
Last summer we had a houseful at the beach, with our children and their spouses and the seven (soon to be nine) little grandchildren. The cousins don’t see each other much, so they splashed and ran and shouted, the wind tearing at their voices. But Adam, then four, stayed by himself. He moved along the edges of the dunes, circling the family like a silent satellite. Last year, Adam received a diagnosis of autism.
Adam is a beautiful child with a cream-and-rose complexion and clear blue eyes. He wasn’t quite two when, at a backyard party, he walked over to the cars parked in the yard and began reading aloud the license plate letters and numbers. No one had taught him this. He developed a fascination with the alphabet, words and numbers, maps and globes, and any repeating pattern (he loves M. C. Escher images). When he was evaluated at three-and-a-half, his cognitive level was that of a seven-year-old.
Ever since his toddler days, Adam has surprised us by coming out with things no one could recall teaching him, and it was sort of unnerving. I kept thinking we were going to find a bill from the University of Phoenix in his crib.
But talking – that’s different. When Adam began trying to talk, the strain was evident in his face and tender eyes. In photos from his first birthday, he looks worried and lost. Sometimes words would come out too loud, sometimes too soft, usually flat and expressionless, always halting and reluctant. Adam looks like someone who doesn’t speak English and is laboring to translate word-by-word in his head. I told his mom, “When God made him, he must have put in the Japanese module by mistake.”
So there’s a ring of silence around beautiful Adam. He doesn’t interact much. If you ask him a question, he’s likely to repeat it, or just ignore it. He isn’t interested in other children, and doesn’t have friends outside the family. He is remote, a space station overcharged with data, orbiting silently, far away.
The silence is what hurts. Parents don’t only love their children, they also crave to know their children. I’ve heard moms in the delivery room say to their newborns, “Open your eyes so I can see you!” – though they can see every inch of the baby but his eyeballs. A baby is a present you can’t unwrap all at once. It takes years of reading his eyes, learning what makes him laugh, watching him run and tumble with friends, hearing his bedside prayers. But with an autistic child much of this can be impossible.
When you think about it, language is a pretty tricky operation. It’s the thing that allows us to communicate, but also the thing that makes communication frustrating. The speaker must hike down to his scrambled storehouse of words and pick out ones that fit, more or less; then he hauls them back up and tips the bucket into the empty air between him and the hearer. The hearer receives the words sequentially, as each pebble hits the ground. He must gather them up and cart them back down to his own dictionary-storehouse; there they will jostle meanings and associations unanticipated by the speaker.
What a cumbersome muddle all of this is, and so complex that it’s amazing anybody ever gets it right. You can understand why an autist, finding this even more difficult than we do, might opt simply to withdraw.
Adam announces, “I am going to go off of the world.” He is going to be an astronaut, and go away in a space ship. This is his latest interest. “You” – here he pokes a forefinger into your arm – “you will stay here.”
Adam plans to go far away from this confusing, difficult place. Sometimes even non-autists can find that idea appealing. There are so many ways for us to misunderstand and hurt each other, and even when things are at their best a sense of separateness shadows our joy. We look at others from the outside, making guesses what they’re thinking about. We reach out, and the very skin that allows us to touch is the barrier that keeps us apart. The most that two people can be is two planets in a common orbit, and it’s at the happiest of times that we recognize this limitation. Maybe that’s why people cry at weddings.
The problem that autists have with other people is just an extreme form of the alienation that troubles us all. Autists have a bad case of the Human Condition.
Parents of autists may feel: if even the best human relationships are sadly limited, what hope is there for my child? A tragedy some years ago gave me unexpected light on another way – the only effective way – to be deeply connected with those we love.
When my father died in a car accident, I was 29. Our relationship still had lots of knots and tensions from my teen years – a different kind of communication difficulty than parents of autistic children have, but still a sad example of the pain that all humans who try to love each other know. But as I listened to the prayers and Scriptures at his funeral, it hit me that, from his perspective, all the confusion was over. He was standing in the searching light of God, where all things are made clear and all truth is known. That meant that, from his perspective, our relationship was for the first time perfect and whole, in a way it could never have been on earth.
Though I don’t yet have that perspective, I can still grasp its truth. The only place I can ever meet my father again is in the presence of God, who understands us both, perfectly – much better than we can understand ourselves. And even though he sees right through us, his response is endless love.
When we’re bewildered, lonely or hurt, when the futility of efforts to connect is too painfully obvious, we can relinquish our confusion to the Lord. He knows every heart from the inside, and “in him all things hold together” (Col. 1:17). His love is the life streaming through all Creation. So even in this life we are connected with those we love through God, something we can barely grasp now, but which will one day flood our awareness.
Parents are pained by their inability to reach an autistic child; he’s only a few feet away at the other end of the sofa, but might as well be circling the dark reaches of space.
But he is known by God. He is transparent to the light of God, who shines through us all, who understands us and our children, and everyone we know, and everyone we don’t. Only in him will we one day love each other the way we want to, the way he already does. St. Paul writes, “Then I shall understand fully, even as I have been fully understood” (1 Cor. 13:12). We have been fully understood, even the least explicable among us, and one day we will rest in tranquil full communion.
Adam says, “I am going to go off the world. You will stay here. But I will come back to you. I will come back soon.”
Frederica Mathewes-Green, khouria to a priest of the Antiochian Orthodox Church, is the author of many books – most recently The Lost Gospel of Mary: The Mother of Jesus in Three Ancient Texts (Paraclete Press). Her article is excerpted from “Loving a Child with Autism” published on Beliefnet, April 13, 2007. She is a member of the advisory board of the Orthodox Peace Fellowship.
llustrations by Michael Mojher,from The Diaries of Adam & Eve by Mark Twain
From the Winter 2008 issue of In Communion / IC 48