In: Perspectives on Parenting Children on the Autism Spectrum. I am especially indebted to Stephen Donadio and Carolyn Kuebler at NER for their support.
To Philip Brady, executive editor at Etruscan Press, who enthusiastically embraced the book and to Starr Troup, managing editor, who clearly understood and effectively shepherded this project to its publication, I also owe deep thanks. You have helped complete a long journey.
Finally, I wish to acknowledge my daughter, Sarah, and partner, Mary, for their patience and love, and my son, Jacob, whose own love and rituals of living compel me to write and to reconsider all that I think I know.
AN ARCHAEOLOGY
OF YEARNING
FLESH AND BLOOD
Scientists speculate that one anatomical change—the development of the voice box, those tenuous strands tucked in our throat—precipitated that miraculous evolution to modern human. Even now I marvel at this budding stutter of muscles, this echo chamber of flesh and blood. I wonder at the deep yearnings that first exercised the throat and tongue, the vowels rounded out of some primal joy or pain. Cave paintings still remain dark and liminal compared with this taste of compressed air.
At night, Mary and I huddle together, the soft lamp light casting the shadows of our limbs upon the wall. We rehearse the events of the day, reserving a ritualistic place for the gentle word by word caress of our children’s names and their naming. Sarah. Jacob. Without this word play, it seems, we would disappear half-formed into sleep.
We talk of Jacob. He has autism. If the evening was a difficult one, if he had only the vague gesture of language for meanings rich and intense in his mind, we find ourselves licking the blood of small crescent marks on our arms where he pinched us in frustration. “What is happening?” he cries when he kicks, when we will not let him watch another episode of “The Magic School Bus” or “Where in the World Is Carmen San Diego?” “What is happening? What is happening?” We know that we have heard these words before in some forgotten video or story. We wonder whether something important might be revealed if we found the source.
After I turn off the light, I recall images of day: the precise chorus line of animal figures, small to large, that Jacob has posed on the window bench; the tangle of Sarah and Jacob on the hardwood floor, watching the animated version of Tomie de Paola’s children’s book Bill and Pete; Sarah’s endless evening chatter; Jacob’s incessant movement.
Now here I am mixing words like red ochre in my hands, lining my sounds like cave art, caught up in my own private symbols. What is happening? What is this red on my tongue? What is the meaning of the blood on my wrist, the crescent moon of finger nails pressed hard to the flesh?
“Oh, l-ook. A nice dinna!”
Jacob looks past my eyes and points toward the top of the refrigerator. The end of his right index finger curls slightly downward, as if he knew himself that nothing is to be found amid the dusty tops of things.
“Oh, l-ook.” His tongue holds the “l” as if a whole note; the “ook” forms a Dr. Seussian accompaniment. When I pick him up, he twists in my arms like a wild thing and grips the door jamb. We are a raft adrift. His arms are oars catching the sides of the river bank; we have no word for shore. The torque of this leaning pulls at my back, yet I still guide him forward until his hands find the refrigerator. He leaves the dots of his fingertips in the dust.
“What do you want, Jacob? Tell me what you want.”
“Oh, l-ook. Oh, l-ook. A nice dinna!”
For Mary and me, the early years of autism were full of these inexplicable mysteries. I think of them as the wandering times, the wilderness days of storytelling in the face of the unpredictable and unknown. Family and friends lent their own memories because the new ones of Jacob did not fit our remembrances of Sarah’s early development. Relatives recalled the uncle who sat mute among his siblings—and then chose to begin talking at four. Neighbors related the odd fixations of now gifted adults, musicians and artists who, like our son, seemed disinterested in chatter and the social life of jungle gyms. Sometimes, this remembering seemed to urge an unspoken moral: the good parent should not hover or fret with the child who does not chat. Eventually, confusion and doubt filled the spaces that opened up in the uncertainty. What if we did not attend properly to diet, to hints of developmental delays, to the need to intervene earlier in the face of his silence and sleepless nights? Was there something else we could have done or should have known? And then there were the irrational moments, the wondering whether some lack of faith or humility set these new mysteries in motion. What ignorance or arrogance led to this unexpected play and our helpless looking? In these unraveling seasons, a fine line existed between reason and superstition, between the stubborn belief in the miracles of self-denial and the self-evident facts of Jacob’s withdrawal. Though we learned that autism affected communication and social interactions as well as manifested itself in unusual or intense fixations and rituals, we saw no clear path through the confusion of his peculiar phrasings and behaviors. As a result, I felt like a wanderer, the father in some fable who discovers a lost child, brings him into the home, and provides steaming soup and hand-me-down clothes—only to find that the orphan cannot speak or can only utter unfamiliar words. Our waking hours were filled with endless detective work to find the meaning behind private codes and gestures.
Sometimes we knew how to solve the mysteries. One Saturday afternoon, we were on the back deck, talking with our friends, Marion and Con. Jacob came out with a pair of scissors, a long, hot dog-shaped balloon that we had blown up earlier in the day, and a red scrap of construction paper.
“Red udder,” he said, urgently handing me the items.
He was around six, had been diagnosed with autism at three, and so we had learned a disciplined patience in the face of his sudden requests.
“Red udder. Red udder.”
The balloon skidded atop the table, its rubbery smell sticking to my fingers as I thumped it rhythmically against my forearm. We all looked at each other, perplexed. Jacob took the red construction paper and held it against an end of the balloon. For a moment, I remembered not to think with words; I emptied my mind of the clutter of questions and did not panic at his enigmatic phrase.
Ruminating on the long tube of the balloon and the red slip of paper hanging at its bottom, I glimpsed the answer. It came to me in color, like a quick glance at an impressionist painting of an autumn tree, leaves just splotches or dots of red, auburn, and rust. I saw the tube as a metal cylinder rising toward the stars atop a fiery burst. A rocket. He wanted me to make a rocket ship.
“Rocket ship,” I said, pleased to have the words to give to my son and relieved to have avoided an afternoon of his fretful, roving efforts to be understood. Jacob took in a deep breath and let his arms rest upon Mary’s lap. His leaning was relaxed, though
