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The mystery of autism
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A parent’s struggle to
find a cure for her child
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April 15 — When
their 19-month-old son, Miles, was diagnosed with autism, Karyn Seroussi,
a writer, and her husband, a scientist, fought back with the only
weapons at their disposal: love and research. Consulting medical papers,
surfing the Web, and networking with other parents, they traced the
onset of their child’s problems to an immune system breakdown that
coincided with his vaccinations. So Karyn and her husband got to work —
Karyn implementing their program at home while her husband tested his
theories at the scientific lab where he worked. Read an excerpt of
“Unraveling the Mystery of Autism and Pervasive Developmental Disorder:
A Mother’s Story of Research and Recovery,” and learn how the Seroussi’s
found a cure for their child. |
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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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April 15 —
Author Karen Serroussi talks with Ann Curry about her book
“Unravelling the Mysteries of Autism”. |
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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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After eight ear infections in three months, and countless doses of
antibiotics, I had asked the doctor if she would recommend ear tubes for
Miles.
“I don’t like medicating him so often,” I had explained. “It seems
like he’s always on antibiotics. And he’s up for so much of the night. I am
really not functioning very well on so little sleep, and Laura is finding
his constant crying extremely stressful.”
“Well, some children require more effort than others. Just because
you had an easy time with Laura doesn’t mean there’s something wrong with
Miles.”
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“Yes, I realize that, but he is just so difficult. I own a
retail business, and I can’t tell you how many times I’ve had to leave work
to bring him in. And the screaming... I’m sure there’s something wrong with
him. I thought that if he had ear tubes . . .”
The doctor had looked at me coldly.
“Parenting can sometimes interfere with our work schedules,” she had
said. “Perhaps you are the one who needs help, not Miles.”
I was stunned. I had stared at her for a moment, then turned around
and walked out of that office for the last time.
This event begins our story. I was to learn that the next chapter of
our lives was not to be unique. To other parents of autistic children, it
was a hauntingly familiar sequence of events. |
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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.”
Ear infections occur when fluid builds up in the inner ear. “Tubes,”
which are called “grommets” in England, are little rubber cylinders that are
installed in the eardrum to help alleviate the pressure and hopefully
prevent further infections. While the child is anesthetized, his doctor
makes a tiny incision in the eardrum and inserts the tube as if it were a
window between two rooms.
Mrs. Percy laughed and handed me a form to sign, authorizing them to
give Miles his measles-mumps-rubella vaccine.
“What happens if I don’t sign this?” I asked.
“Well, you won’t be able to send Miles to nursery school, or
kindergarten.”
“Oh. Okay. It’s just that these risk warnings are kind of scary.”
“Well, vaccine reactions are very rare. Try not to think about it.”
“Okay. But first, can you give him some Tylenol? He had a really bad
screaming episode after his two-month DPT shot.”
Three days later I was back. Miles had another ear infection.
Eight days after the shot, on April 12, after giving me another
lecture about how the medical community was trying to be more conservative
about inserting ear tubes, the otolaryngologist approved the surgery. It
would be at the end of the month, just before our trip to Los Angeles to
visit Alan’s family. |
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Then, two days after that, Miles had a really miserable
day. It was the first night of Passover, a night when my family always came
together from different parts of the country. I was having the Seder, the
ceremonial dinner, at my house, and was frantically trying to prepare.
Fortunately, I had arranged for Lyn, our baby-sitter, to stay for dinner and
to put the children to bed. Miles was pale and cranky, and barely
acknowledged his grandmother or his adored Uncle Matthew. He cried during
the meal and refused to eat, instead drinking several cups of milk. Lyn put
him to bed early.
Late that night, only an hour after I finished cleaning the kitchen,
Miles was up screaming. His face was red and his limbs seemed to be shaking.
Alan put some liquid ibuprofen in a cup with a couple of ounces of milk, but
no sooner did Miles drink it than he threw up. Over the screaming I hollered
to Alan to find the thermometer — Miles was beginning to feel warm.
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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.
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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.
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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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ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
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