Chance Encounter #1
Although there are many authorities in the field of autism, the two individuals who helped me the most were parents, who just happened to be there at the right time.
In January 1990, my Doubleday editor asked me to copyedit Sound of a Miracle, by Annabel Stehli. It was a mother’s memoir about raising her autistic daughter and how the girl was helped immensely by a French auditory therapy. I vaguely remembered a Life magazine article about an autistic boy who would only eat White Castle hamburgers, but that was the extent of knowledge about the disorder.
I was not prepared for the gripping, heart-wrenching story of a mother’s struggle to help her daughter, and although copy editors are discouraged from writing personal comments about an assignment, I couldn’t help adding to my final memo: “The book is so powerful that even this jaded copy editor cried throughout most of it.”
Autism, according to Annabel, often shows up around eighteen months of age, and at one point, I tearfully bent over my peacefully sleeping seventeen-month-old son James and whispered, “Thank God you don’t have that horrible condition.”
About three weeks later, James underwent a complete personality change. I remember the exact day. For the first two weeks of his swimming lessons, he was bold and joyful, jumping fearlessly into the pool and splashing me with abandon. But when we entered the pool area for the third lesson, James screamed and ran back to the locker room. When I insisted that he return, he threw himself on the tile floor and started banging his ear. The teacher told me to force him to stay in the water, and he screamed for a half hour then gave up and went limp in my arms. He repeated this pattern during the next seven weeks. He also refused to go anywhere without a fight, sometimes just sat in his stroller for hours facing the wall, would shriek if I took him to a play date with his former friends, and always seemed listless and out-of-touch. When I took him to the pediatrician and asked if James could have autism, the man shook his head and said, “That condition is very rare. I’ve been in practice for twelve years, and I’ve never had a single autistic patient. Maybe he’s anemic.”
However, as the months passed, James developed more of the symptoms that Annabel described, notably hyperacute vision and hearing some of the time but a kind of deafness and a complete lack of eye contact and visual interest at other times. I took him to various doctors and therapists, who told me that I was spoiling him, I was too attentive, I was too impatient, etc. One speech therapist told me that a child develops language through frustration and need—the fact that I had learned to intuit and automatically attend to my nonverbal son’s every need meant that he had no reason to learn how to speak. I didn’t realize what utter BS that was until I had my second child, who absorbed language like the roots of a plant sucking up water and whose first words burst out like flowers in the spring. But if I hadn’t had that chance encounter with Annabel’s book, I might have actually believed all their nonsense.
By age two, James and I were undergoing what felt like the dark night of the soul. I couldn’t go anywhere; I lost all my friends. I watched in amazement as other people’s children spontaneously talked and played and lived. But the one thing that James did that other toddlers didn’t do was that he had apparently taught himself to read. In fact, the alphabet seemed to be the only thing that brought him out of the Twilight Zone. At first, he was able to correctly identify the letters on The New Yorker and other magazine covers (i.e., “Point to the N,” etc.), and sometimes he would do something phenomenal. For example, when we were watching a video of “The Farmer in the Dell” on the TV, he grabbed one of his small audiotapes and correctly pointed to words “Farmer in the Dell” in the song list printed on the label. Another time, one of the few visitors to our apartment said, “See you later, Alligator, after while, Crocodile,” as he was leaving. James raced over to the bookshelf, pulled out one of his books, and pointed to the title—The Enormous Crocodile. Despite this unique interest, his IQ was tested at 54, and no preschool in Manhattan (where we lived) would accept him. Therefore, we packed up our stuff and moved to Northbrook, Illinois, which was near where my husband Doug grew up.
We enrolled James in a local preschool, but two weeks later, I was told that he was so noncompliant that they were kicking him out. “He needs special ed,” the teachers insisted. In the back of my mind, I kept thinking about autism and that French auditory therapy. Maybe I could take James to France, and he would experience the same “miracle” that saved Georgie Stehli.
Chance Encounter #2
The early childhood special ed program took up an entire floor of a former high school. I toured the place but was unimpressed. The kids were listless, uninvolved, stubborn, sleepy, or often ignored. When I was saying good-bye to my tour guide, she sensed my hesitation and said, “Would you like to talk to one of the parents?”
“Sure,” I said.
The woman thought for a moment, looking at the floor. “Let me see,” she said, “who would be a good person to talk to? Gee, I’m not sure who. I wonder . . .”
Just then a well-dressed woman walked by us quickly, as if in a hurry to get somewhere. My tour guide was still thinking, but she looked up just as the other woman was disappearing around the corner. “Her,” my guide said, pointing. “That’s Rhonda. She’s the parent you should talk to.”
Sometimes I wonder what would have happened to us if Rhonda had not walked by at that exact moment and if the tour guide had not looked up just before the back of Rhonda’s body vanished out of sight. Our lives would have been different, at least in the short run.
I called Rhonda as soon as I got home. She asked me to describe James, and I told her about his autistic traits, his lack of verbalization, his social detachment, but his precocious ability to read and write, which by this time (age three) included carefully printing words like “Oldsmobile,” “McDonald’s,” and “Sign Available.”
“Wait!” Ronda said excitedly. “I know what it is! I just read about it. Listen to this.” Then she read aloud a description of a rare, recently identified syndrome called “hyperlexia,” which was a form of autism that was accompanied by an obsession with the alphabet and self-taught reading. This was James! She told me that a speech clinic in nearby Elmhurst had experience with hyperlexic children, and that the condition stemmed from an auditory processing disorder which the child compensated for by overdeveloping their visual processing. Immediately, I thought about the auditory therapy that Georgie Stehli had undergone, and I brought this up to Rhonda.
“Unfortunately, it’s only available in France,” I signed.
“Not anymore,” Rhonda said. “It’s available in Carol Stream. And I’m planning to take my son.” Apparently, Annabel’s book had been such a success and had caused such a demand for the French auditory therapy that the Stehlis had brought the therapy’s inventor to America, and he had held training classes for American audiologists.
Because of Rhonda, I took James to the speech clinic in Elmhurst, and he also received a two-week session of auditory integration training in Carol Stream. I can’t say that his language burst forth like spring flowers, but the speech therapist told me that she had worked with almost 100 kids like James, and the prognosis was very good. They simply learned language through a different pathway, namely, by reading it. And the auditory training made James much less sensitive to sounds so he could pay greater attention to the auditory world. Because of Rhonda, I suddenly had hope.
Chance Encounter #3
Once it was established that James was using printed letters and reading as a gateway to language, I started writing everything down on a giant newsprint pad. “DO YOU WANT MILK?” etc. Then I would point to each word and say it out loud. But being a pretty emotional person, I didn’t want him to just learn the basics. I wanted him to be able to express his inner thoughts and feelings. What would James say, I wondered, if he had the words to say it? By then it was early 1993, and although home computers were relatively new, we had one, and Doug bought him the Sesame Street Writer, which enabled you to fill up 20 pages per file (with about 20 words per page) using a giant primitive type font.
Every afternoon, when my infant daughter Lauren napped, I sat James down next to me and I typed out the theoretical story of his day. I didn’t know if he understood a word, but I had his full attention, and I made sure to include some emotional language: “Today I woke up feeling lonely. I wish I could learn to talk so I could have a friend. Sometimes I get angry at Mommy for paying too much attention to Lauren, even though it can be fun to be an older brother.”
One day as we began our writing session, the phone rang. While I was talking, our second line rang, and I answered that call, too. When I returned, James was sitting in my chair—typing. He had a determined, almost crazed expression on his face. Had it not been for those two phone calls (a kind of chance encounter), my four-year-old would not have had the opportunity to write this (even the underlines are his):
After mommy was calling on the fone James said mommy get off
the fone and play computer Mommy Hurry up and play
I want my mommy playing not talking on the fone that is
unbleveable for mommy’s
Not again a fone call do the IBM computer
Why would mommy put that computer thing off
again Please do not do it mommy
That is a stupid thing to do
Why would mommy pack fragile boxes
That is a stupid thing
Don’t pack them saying fragile pack regaular boxes
not fragile boxes in house 1637
we have to pack at 1008 Keystone not 1637 Highland
why would Behdod’s present say inarium
Why do bees hum Because they can’t sing the song
I could go through and explain what each of the incomprehensible lines means (for example, we were packing to move from 1637 Highland to 1008 Keystone), but suffice it to say that it was not gibberish, and I was delighted to see that he included his feelings. “Not again a fone call” was undoubtedly when the second phone line rang. From then on, he typed out his own stories, and I still have a thick stack of them, along with the Sesame Street stories. Were it not for those two “fone calls,” I might not have discovered James’s ability to write until much later.
Chance Encounter #4
James repeated auditory training at age five, and I wrote up my experience in the newsletter of the obscure American Hyperlexia Association, which probably consisted of a hundred parents, if that. He made significant improvement in auditory processing the second time around, and the audiologist said that hyperlexics often showed the most improvement. One day when James was typing up a storm on the computer, the phone rang. “Hi,” the person said, “this is Annabel Stehli. Someone showed me your article in the AHA newsletter, and I just had to call you.”
“Annabel Stehli?” I almost shouted. “The author? I copyedited your book!”
There was a long moment of silence on the other end. Uh-oh, I thought, did she not like my work?
Then she fairly exploded, “You mean you’re the jaded copy editor?”
“Wait, you read my memo?”
“Yes. My editor showed it to me. And for years I wondered, ‘Who could this person be?’ I conjured up images of a little old lady reading my book and leaving tearstains in the margins.”
We laughed and talked for about an hour, and I told her that if I hadn’t read her book, I wouldn’t have known about autism and I certainly wouldn’t have known to look for auditory training. We became friends, and I copyedited and indexed her next two books, which she self-published.
James, meanwhile, kept typing, and when he was eleven, we collaborated on an informal e-book. We e-mailed it or printed it out and mailed it to anyone who asked for it. Soon, there was an explosion in the number of autistic kids, but because James was born in 1988 and the autism baby boomers were born in the 1990s, he was always just a little bit older than most everyone else, so parents would ask me, “What did you do when . . .” Someone named Amy called me from Singapore 3–4 times a week for several months because her son was clearly hyperlexic, but nobody knew anything about that condition in her country. Finally, our little e-book was published in 2000 as The Self-Help Guide for Special Kids and Their Parents, and we became somewhat known in the autism community. Although there are now numerous treatments and interventions, many of which we tried along the way, and many authorities in the autism field, the two individuals who helped me the most were parents, who just happened to be there at the right time.