My wife recently read me her journal entry from the day our younger son turned two years old. She had written quizzically that he had still not spoken any words despite a good deal of speech therapy. For months previous to that birthday, he had also been engaging in repetitive, obsessive behaviors. He walked circuits around the couch with total concentration, oblivious to the rest of his surroundings. If you were in his way or tried to engage him in another activity, he became upset and screamed for what seemed like an endless amount of time. In fact, interacting with him began to appear impossible. The beautiful boy we adored shrank more and more into his own isolated, small world. It was as if somebody was taking him away from us.
I remember when another person raised the idea that he might have autism. At first, it did not seem like this condition could apply to our boy. My image of autism was a child who could not be affectionate, who rocked uncontrollably. But our little guy did not shrink away from hugs and did not perform any unusual activities with his body.
Still, something was clearly wrong. When he was two and a half years old, we were able to get him an appointment with a pediatric neurologist. I wondered if the doctor would be able to make much sense of his behavior in just one appointment. Shortly after the physician entered the exam room, our older son began trying to take over the appointment with disruptive behavior and I took him out to the car to find a toy to distract him. When I returned to the room and asked my wife what I’d missed she appeared shell-shocked. She mumbled “autism” and when I looked to the neurologist he concurred confidently that this was the diagnosis.
My immediate question was what his future would hold. Would he ever be ever able to live independently, to take care of himself? The doctor told us it was too early to tell. We were given a referral to an autism center and scheduled some blood tests and a brain MRI. And then we left. Completely numb. I went back to work, seeing my patients scheduled for the afternoon and visiting somebody in the hospital I sent to the emergency room that morning.
I try to remember how I felt that day when I deliver bad news to a patient. There is vast divide between the physician sharing a hard reality and the person receiving it. As much as the doctor works to imagine what it must be like, he or she is not the one whose life is changing. The physician moves on to the next patient, while the patient now lives in a new world.