Twelve years ago, when I learned that my 3-year-old son had autism, I asked the doctor how to help him. He said, “In autism, there are only schools of thought,” he said, “but you’ll know pretty quickly whether something’s working or not.”
Those words have come back to me time and again, as I have struggled not only with the harsh reality of autism, but with the lack of definitive knowledge out there.
I have explored many approaches and treatments and yet I still sometimes doubt I did right. Guilt bubbles up out of nowhere, way past the time I thought I had worked things out.
Grief is not linear as much as a zigzag; I dip back into old feelings even after I’ve moved way ahead.
In the early days, like most parents new to the diagnosis, I tried many things for Nat. I tried sensory integration therapy, speech-language therapy, and a language-saturated classroom that had a good student-to-teacher ratio. And yet he would come home from his classroom and still twirl string in the sunlight, glassy-eyed. He was 4 and achingly beautiful, but still agonizingly apart from me. Was this what the doctor meant, that something was not working? Could I expect more improvement than this?
My heart told me that I had to do even more. I pushed our school system to send him to a private school for autism, where they used a form of intensive behavioral modification called Applied Behavioral Analysis.
True to my doctor’s words, I could see quickly that this was an effective approach. He could pay attention for longer periods of time, and he was more willing to do things with us: vacations, movies, and parties. Once in a while, he’d even play Candyland with his little brother.
But then Nat turned 7 and stopped sleeping. And started laughing through the night.
Back to the doctors, each of whom had different advice. One urged me to simply close his door and “retrain him.” One recommended melatonin.
One, an electroencephalogram, or EEG. I tried all, and the sleepless nights continued. “What about medication?” I asked.
“Oh, you don’t need that,” they said. No one knew what to do. Sleep-deprived for months, I could not live like this anymore.
By chance I heard about using Clonidine, a blood pressure medication, for sleep disorders, but I had to work hard to find a doctor willing to let us try it. That night, though, as I fell asleep instead of hearing that laughter I had come to hate, I became a believer in medication.
Our new doctor also prescribed Zoloft, because he had had some success in using it to treat his autistic patients’ social difficulties. Soon Nat’s language ability developed to the point where he began to read. And to make sweet, odd little jokes. The doctor’s words from long ago now seemed to mean, “Try everything, you never know.”
Hope flared as I tried more things. I heard from other parents about the possible connection of food to autistic behavior. I had him tested for certain food intolerances and dramatically changed his diet for a while. Nothing happened.
Maybe he could try a bigger dosage of Zoloft; who knew how much more he might improve? Or maybe he could try a more typical classroom. I acted swiftly, increasing the medication, moving him from his small classroom to a more academically challenging, traditional type of classroom, because I wanted more.
I did not realize until then that sometimes you just don’t get more. Within a few months, Nat’s profile changed radically, perhaps from the Zoloft, or from the stress of the new classroom. He became so unstable that he was expelled. He was home for two months, becoming increasingly volatile, while we waited for a new classroom space to open up. Our doctor prescribed a medication that could ease the aggressive behavior, but there were potential side effects of facial tics and liver damage. Could I make such a choice? Yes: I had to do something to get our lives back.
Since that awful time, for four years we have been coasting steadily, at the same school placement, with the same (adjusted) medications. Nat’s string-twirling and challenging behavior are well under control, but he remains a solitary teenager. Yet during this time, Nat has successfully tried gymnastics, swimming, and rock-climbing. Recently he had his first playdate.
Hope still flickers, gently propelling us to new activities rather than trying to reshape who he is. And now when I hear the raves about the newest medications, the diets, the new programs, I consider, but I don’t jump to try them. By now, I know enough that the doctor’s words really meant, “You will know when you have done enough.”
Well, maybe. But I’m hoping he will try out for Brookline High’s track team this fall.
Copyright 2005 Globe Newspaper Company.