In 2003, Susan Senator first wrote in Education Week about the personal and educational challenges facing her autistic son. The mother of three boys, and then a Brookline, Mass., school board member, she tried in her essay to locate the nexus between public responsibility to school all children well and private need to celebrate the small joys and singular milestones of a special child. Now a passionate advocate and writer on the subject, Ms. Senator shares in a new book her family’s experiences with autism. The following is an excerpt from Making Peace With Autism.
Prior to Nat’s diagnosis of autism at age 3, I went around believing that something was wrong with me as often as I felt something was wrong with him. No one, not my husband Ned, nor my parents, nor our pediatrician, saw what I saw. And even then, sometimes I did not see it. All I knew was, something was a little off with Nat. Although he let me know when he needed to eat or sleep, and was actually quite easy to figure out, there was something else, just a feeling I had that he did not really need me.
Into Nat’s second year, though, I was increasingly at odds with Ned because he didn’t see what I saw and he sometimes acted impatient about it. He rationalized away my observations, dismissed my complaints, and generally acted defensive about Nat. By this time there was an atmosphere of growing sadness in our home, as if a mold were seeping into the walls around us, sickening our relationship.
Being read to from a book, with its logical progression from beginning to middle to end, seemed to make him feel safe.
My mother did her best to reassure me in those days, when I complained that Nat seemed to shy away from peers. “Just get him around other kids more,” she said as we walked together on the beach near her house. “He just needs the experience.”
My heart sank when she said this. Just getting him around other kids seemed only to make him withdraw, and I was less and less inclined to want to try it. “Mom, it just doesn’t work,” I ventured. “I don’t know what it is.” I felt like such a failure.
Mom pounced on each of Nat’s developmental stages like a hawk on meat. Each visit, she would show up at our house with bags filled with toys geared to stimulate Nat’s development. She was the first to bring him Play-Doh (he ignored it); the first to bring finger paints and toy trucks (he mouthed them). My mother had an insatiable appetite for Nat. She was always pointing the camcorder and the camera at him. And she pursued Nat’s attention with determination. Our house filled up with trucks of every size, boxes and boxes of crayons, an easel, toy figures, and puzzles, but he didn’t show interest in any of them. Nat lit up when he saw my mother, but not because of the toys. What caught his interest was her animated face and her bright chatter.
One winter’s day, when Nat was around 14 months old, we had a profound breakthrough. It had to do with a book my mother had bought Nat called Corduroy’s Day: A Counting Book. We were snuggled on the couch together, Nat leaning against me, thumb in mouth, as I read the book once and then I decided to read it again. When I finished the second reading, he took the book from my hand and then gave it back to me, making the urgent sounds,“Unh, unh, unh.” He clearly wanted me to read it again, and I did. I felt a glimmer of what it must have been like for Anne Sullivan at that water pump, knowing without a doubt that she had gotten through to her student. We had been reading to Nat for months and months, without him showing any sign of appreciation or understanding. Until now. Finally, Nat was showing us how much he loved books, their predictability and comforting rhythm. Being read to from a book, with its logical progression from beginning to middle to end, seemed to make him feel safe. Every time I finished reading him the Corduroy book that day, he would make sure I knew that he wanted me to read it yet again. I must have read that little book 20 times, and I would have read it 20 more if he had asked. This was the first time we had done something together that he could tell me he enjoyed. My heart raced with excitement.
Corduroy’s Day was a real turning point. It was momentous for us to realize that Nat could understand stories and be affected by them somehow. Something in his environment, something complex and with the potential to expand his world, was giving him pleasure. I had never felt before that we could give him anything he really wanted other than food or drink. And so we read to him constantly. My husband loved children’s books, anyway, their perfect simplicity and beautiful illustrations, and was he always buying Nat new ones in addition to those my mother showered upon us. (One psychologist commented later that it was likely this saturation with literature that helped Nat grow any kind of vocabulary at all, given the degree of his autism.)
I soon realized that he liked books best when he was familiar with them, so in order to get him to listen to new books, I read them through quickly, then again, so that they would “catch” with him. This way, I could keep expanding his repertoire and maintain his interest.
By the time Nat was 2, he loved books so much he had begun to memorize them. Our first conversations with him were mostly crafted out of lines from books: If I gave him strawberries, I’d say “Look, Nat, ‘one-two-three-four strawberries,’ ” the line from a waterproof bathtub counting book. Ned and I began to play fill-in-the-blank with Nat, starting a sentence from a beloved book and waiting for him to finish it. When we played this way with him, he would reward us with happy book chatter and a wide smile. We found that we could use content from books to explain new concepts to him, too, a process that delighted him. For example, we used lines from the book Corduroy Goes to the Doctor to explain that he would have to get undressed, get weighed, and get a shot. “Do I get a shot?” asks Corduroy.
“Yes,” says the doctor. “We don’t want you getting sick.”
Though he mostly spoke by quoting books, Nat’s original speech, rare as it was, was breathtaking in its expressive imagery. “Pejush-shush window,” meaning “peanut butter and jelly sandwich window,” was his way of describing a colorful stained-glass window he had seen, for instance.
Before too many months had passed from the time of our breakthrough with Corduroy, Nat had memorized The Velveteen Rabbit, a rather long and complex children’s book. There was even some excited talk among family members that he was going to be an early reader. I began to feel confident that he was actually gifted, overlooking his eccentricities. A tiny seedling of hope unfurled within me. It didn’t last long. By the time Nat was 2½, however, doubts had sprung to life again, this time in both Ned and me.