The mystery of autism

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http://www.msnbc.com/news/737780.asp

The mystery of autism

A parent's struggle to find a cure for her child

By Karyn Seroussi

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.

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 - 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. "

April 15 - Author Serroussi talks with Ann Curry about her book

" Unravelling the Mysteries of Autism " .

" 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.

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 is finding

his constant crying extremely stressful. "

" Well, some children require more effort than others. Just because

you had an easy time with doesn't mean there's something wrong with

Miles. "

" 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.

Dr. Stover, our new pediatrician, was booked up when we switched to

her practice, so on January 12 we saw her nurse-practitioner, 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.

In mid-February I was back in her office. I explained that I was

concerned because Miles's language development seemed slower than 's

had been.

" From what you've told me, 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. 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.

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 . 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.

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. 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? "

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.

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.

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 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.

Autism resources

.. Autism Network for Dietary Intervention

.. Q & A about above diet

.. Autism Research Institute

.. National Vaccine Info Center

.. Free autism online newsletter

.. Firstsigns.org

.. Power of One Rally

.. Comprehensive gluten-free, casein-free autism resources

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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.