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THE DIAGNOSIS A SEVERE LANGUAGE delay is almost never diagnosed in a child under two, and autism is tricky — sometimes there are a few words and normal developmental milestones in the beginning and it’s hard to notice when they disappear or don’t increase. Besides, so many well-meaning people had reassured me: You can’t compare him to Laura — she was so precocious. Boys talk later than girls do. He’s had so many ear infections. Alan didn’t talk until he was three. My next-door neighbor’s son didn’t talk until he was four. Einstein didn’t talk until he was... I had changed pediatricians twice, begging for help or information regarding Miles’ irregular sleep patterns and chronic ear infections. At that time, when he was a year old, his social development was not yet a problem, but his ears were. The first two doctors had concurred in a misdiagnosis of asthma due to his mucusy breathing, and prescribed albuterol, a medication that opens bronchial tubes, in the words of the first doctor, “to use if the noise bothers you.” |
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“My mother just
read an article linking milk and wheat to ear infections,” I had explained
to the second doctor. “Do you think I should try taking him off those
foods?” “The medical community doesn’t put much stock in those studies,” she had said. “You can try it if you like.” “Well, Miles loves milk. I’d hate to take it away if I don’t have to.” “It probably won’t make a difference anyway. Some kids just get ear infections. They’ll clear up in the spring.” I had doubted that the ear infections would “clear up” by themselves. Alan and I had had the same disconcerting feeling that we would never again sleep through the night. |
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Dr. Stover, our
new pediatrician, was booked up when we switched to her practice, so on
January 12 we saw her nurse-practitioner, Susan Percy. “What about his breathing?” I asked. “We were told it was asthma, but the albuterol doesn’t seem to make a difference. Can you hear it? It’s not really wheezing. It’s sort of a honking or clucking in the back of his throat.” Mrs. Percy listened for a moment. Then she went out and came back with Dr. Stover, who smiled and introduced herself. Miles picked up his shirt from the examining table and used it to play peekaboo with her while she put a stethoscope to his chest. “Cute baby,” she said, smiling. “Who told you that was asthma?” “Two different doctors. What is it?” “Just mucus,” she said. “I don’t know what causes that — allergies maybe — but don’t worry about it. When he’s old enough to clear his throat, it will go away. You can throw away the albuterol — it won’t help.” “I didn’t think it did,” I said, smiling with relief. |
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In
mid-February I was back in her office. I explained that I was concerned
because Miles’s language development seemed slower than Laura’s had been.
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In mid-February
I was back in her office. I explained that I was concerned because Miles’s
language development seemed slower than Laura’s had been. “From what you’ve told me, Laura was an early talker,” said Dr. Stover. “At this age, at thirteen months or so, two or three words is perfectly normal. Miles’s social development looks good — I wouldn’t worry. But I will send you over to Otolaryngology for a hearing test. I agree that he has had an awful lot of ear infections.” Two weeks later, on March 3, Miles did fairly well on the test. He showed only a very mild hearing loss — “within normal parameters.” We visited the office again a month later, on April 4, for Miles’s fifteen-month “well-baby” visit. “Miles’s ears look good.”
"Yes, well, they should. Alan says we should buy stock in amoxicillin.
But one more ear infection and he’s getting ear tubes — Dr. Roberts at Oto
gave me his solemn promise.” |
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I
measured his temperature at 106. His limbs were trembling violently, and his
screams had intensified. I threw him into his car seat and drove the two
miles to the hospital as fast as I could, running two red lights in the
quiet streets. |
By the time
Alan found the thermometer Miles was very, very hot. I measured his
temperature at 106. His limbs were trembling violently, and his screams had
intensified. I threw him into his car seat and drove the two miles to the
hospital as fast as I could, running two red lights in the quiet streets. Finally, after three Tylenol suppositories, Miles stopped crying and fell asleep. The resident at the emergency room did not have an explanation. The next three weeks were strange ones. Miles seemed very spaced out. He stopped talking, stopped smiling, and started drinking a lot of milk. Then, at exactly sixteen months old, Miles got his ear tubes. In the waiting room, before the surgery, he held my hand as we watched the tropical fish swim peacefully in a large tank. “Ishhhhh,” he whispered, for the last time. After the surgery the doctor told us he had had something called “glue ear.” “The fluid in his ear had hardened into a thick gum, like silly putty,” he said. “It must have been causing a bit of discomfort and perhaps some mild hearing loss.” “What causes that? Could that be from allergies? My mother thinks ear infections are caused by milk allergy.” “I don’t know about that. I do see this in some children. It’s good that we got in there, since masses like that harbor infection and take a long time to go away by themselves. You’re probably going to see a real explosion in his language now.” “Thank you so much,” I said, relieved. “We’re so glad to have this over with.” Alan picked up his dazed son and carried him out to the car. “Now maybe things will get back to normal,” he said. But things did not. Soon we forgot what normal was. My father-in-law was very ill, and we knew that it was the last time that our children would ever see him. I brought the video camera on our trip to California, and taped much of our visit. Laura was so cute, singing songs and telling stories in her squeaky little voice, golden ringlets bouncing around her head. Meanwhile, in the background, Miles trotted back and forth across a patch of gravel in his grandparents’ back yard. Back and forth, back and forth. Several times I tried to engage him, my voice on the videotape sounding cheerful but with an obvious note of concern. “Hi, Miles! Hi, sweetie! Whatcha doing?” |
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Miles
would turn and stare at the camera, unsmiling, for a few seconds, then turn
away. There was no joy, no sadness, no curiosity, no connection, nothing.
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Miles would
turn and stare at the camera, unsmiling, for a few seconds, then turn away.
There was no joy, no sadness, no curiosity, no connection, nothing. I moved
the camera away from my face and tried again. “Miles! Miles! Milo! Miles!” He finally turned and looked at me as if I were a few lines of incomprehensible hieroglyphics, a meaningless combination of features. Chilled, I turned off the camera. At the table that evening, in his high chair, I saw a faint glimmer of acknowledgment as he recognized a familiar command. “Milo, make, bang-bang! Make bang-bang!” I smacked both hands on the table to show him. He knew this; he had done this before. It was one of his favorite games. I felt a twinge of fear. Suddenly, he responded, just for a moment, patting the table with his hands. Then, abruptly, he looked away. I could not get him to do it again. After our trip, life became much worse. Miles’s stools had become very loose, with a sour, pungent smell, and he became more and more withdrawn. One day I was trying to get lunch ready before Miles woke up. Please, just one more minute. He could read my mind. I heard a whine from the baby monitor on the kitchen windowsill. I had forgotten to make a bottle. Urgently, I rinsed off my hands and poured milk into a bottle, screwing on the nipple as I ran upstairs. Sometimes, if he got the bottle fast enough... but it was too late. The whines had turned to screams. Every time he woke up, every morning and after every nap, Miles would cry inconsolably for about half an hour. Nothing seemed to help, and nothing distracted him. I could tell that Lyn, our babysitter, was close to quitting. “Babies are not supposed to cry this much,” she said, over the din, as if I had some control over the duration of his screaming. I looked at her helplessly. Aren’t some babies just high-strung? “Miles, cut it out! Stop!” Alan once shouted. He so rarely raised his voice to the children; it actually startled Miles into stopping, for a moment. Then he began to scream again. “Miles, Miles, you’re giving me a migraine.” “Maybe he’s got a migraine,” I suggested. “Look at how he’s rubbing his forehead on your chest.” I took over for a while, holding him and making soothing noises, for my own comfort, I suppose, since it seemed to make little difference to the unhappy child in my arms. |
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At
first I couldn’t put my finger on it, but there was something about what
Patty’s son had just done that mine simply could not do. Then I realized
that he had pointed. |
Sometimes,
after ten or fifteen minutes, we could get him to stop with a bottle of milk
and a Disney sing-along video. I remember the feeling of relief when the
moving images finally caught his attention and the screaming began to ease
up. I would hold perfectly still with him in my arms, afraid to move. After
a few minutes, my muscles would begin to ache, and I would ease him onto the
couch, moving so slowly and noiselessly that even my cat wouldn’t have
noticed. After a while, we found ourselves relying on those videos a lot. “Hey, Alan, remember before we had kids, when we agreed that we disapproved of TV for young children?” Alan just looked at me grimly. We got into the habit of keeping cups of milk handy at all times, just to avoid the screaming. On ice, in our bedroom, for at least one nighttime awakening. Three cups in the diaper bag for a two-hour trip to the mall. I was at my store. A frequent customer of mine, Patty, was there with her little boy. Her son was the same age as mine and was also not really talking, although he said a couple of words. I smiled at him. He smiled back. Patty prompted him. “Jimmy, can you say hi to Karyn?” His grin widened. “He’s started saying hi,” she explained. Suddenly, he pointed at a poster behind me, which had a picture of a bird on it. “Look!” he said excitedly. At that very moment my mind became firmly unsettled. My belief that my children were safe and healthy was seriously threatened for the very first time since I had become a parent. At first I couldn’t put my finger on it, but there was something about what Patty’s son had just done that mine simply could not do. Then I realized that he had pointed. Just what was it about pointing that was so special? I recognized that it was a child’s request for shared attention, his way of saying “I want you to see what I’m seeing.” Miles did not seem to care about things like that. When Laura was a toddler, I could hardly sit down before she filled my lap with items to share with me, or for me to appreciate with her. She had pointed regularly, while Miles did not. What I didn’t realize at the time was that the absence of pointing is one of the defining characteristics of autism. Excerpted from “Unraveling the Mystery of Autism and Pervasive
Developmental Disorder: A Mother’s Story of Research and Recovery,” by Karyn
Seroussi and Bernard Rimland. Copyright © 2002 Broadway Books. Used by
permission of Broadway books, a division of Random House Inc. All rights
reserved. No part of this excerpt can be used without permission of the
publisher. |
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