Excerpt from the book "Strange Son"
The following is an excerpt from the book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism
by Portia Iversen. Published by Riverhead Books; January 2007; $24.95 US/$31.00 CAN; 978-1-57322-311-9. Copyright C 2006 Portia Iversen
Departure of the Mind
There is a small group of people in this world to whom an event so
devastating has occurred that they may even have stopped believing in God.
Yet the one characteristic those struck by lightning share is a deep and
persistent vulnerability to the possibility of miracles. The very fact that
something so impossibly terrible could have happened makes the chance of a
miracle seem just as possible. Although I didn't recognize it in myself, I
am certain it was this vulnerability to miracles that was at work when I
first heard of Tito Mukhopadhyay.
It happened on a rainy spring day in 1999 at Rutgers University in New
Jersey where I was attending a conference called Attention and Arousal in
Autism that I had organized for the Cure Autism Now foundation. Our son Dov
was seven years old.
"There's a boy I think you should know about," Francesca Happe began,
gesturing for me to sit down. "His name is Tito." The renowned psychologist
from England, whose specialty was autism, continued: "He's eleven years old
and he lives in India. He's quite autistic, but he can read and write and
he's very intelligent."
She smiled at me and paused before going on, as if to gauge my reaction.
"Tito is a wonderful poet as well," she continued. "He's even published a
book, an autobiography with some of his poetry in it."
"And he's autistic?" I asked in disbelief, thinking I must have
"Yes, he is definitely autistic."
Francesca's colleagues in England had heard about this severely autistic boy
in India whose mother had taught him to communicate by pointing at letters
on a board. Of course they didn't believe he could really be autistic, since
a profound deficit in the ability to communicate was a hallmark of the
disorder. So they invited Tito and his mother to England to be tested by
experts and settle the question of his autism once and for all. To their
astonishment, Tito fulfilled the diagnostic criteria for autism beyond a
"Do you think there could be other autistic people like Tito?" I asked
Francesca, trying not to sound too hopeful.
"There is only one Tito in this world, and no one else like him. He is his
own disorder," she replied with certainty.
I knew that no one had ever heard of such a severely autistic person being
able to write and communicate independently. But wasn't there even a remote
chance that there could be others who looked and acted just like Tito but
couldn't communicate? At the very least, couldn't Tito provide an
extraordinary window into the most severe kind of autism?
As soon as the New Jersey conference was over, I began e-mailing Francesca
in England. I had to find Tito. To my dismay, Francesca no longer had their
correct address and said her attempts to locate Tito and his mother Soma in
India had failed. She said they kept moving because people were
superstitious about Tito and afraid of him. But I might be able to get a
copy of Tito's book if I contacted the National Autism Society of the United
Kingdom, she suggested. The BBC had made a documentary about Tito when he
was visiting England, although it was hard to find.
Francesca did not understand. Finding Tito was not optional. Finding Tito
was a matter of life and death. Or perhaps I should say it was like being
told that maybe, just maybe, you could bring someone back from the dead.
Before Dov became autistic I used to be a sitcom writer and before that I
was an art director and a set decorator. And, nearly twenty years ago, when
I first arrived in Hollywood in a pickup truck with my six-year-old son,
Billy, escaping a midwestern winter and a lousy marriage, I dreamed of
becoming a filmmaker.
Being the land of dreams, it wasn't long before I landed my first job in
Hollywood. It was called craft services, a term I soon learned meant serving
coffee and cleaning up after the crew fourteen hours a day.
And it wasn't long before I met the man of my dreams, a Jewish
matinee-idol-handsome man on whom I would have a crush for seven miserable
years, before his deeply neurotic indecisiveness allowed him to choose me as
the dreaded "friend for life." This term struck a chord of fear in his heart
and cruelly cut short his unrealized dreams of a sex-crazed bachelor
lifestyle, which he'd always been waiting for, not that he had ever had one
or ever would. Still, it was the idea that he could, that I robbed him of,
by marrying him. By the time we actually did get married, Jonathan was a
struggling but mostly working movie producer, I had won an Emmy for art
direction on the Tracey Ullman Show, Billy was thirteen years old, and I was
five months pregnant.
After our honeymoon, we moved into the lower unit of a Spanish-style duplex
in the mid-Wilshire district of L.A. Jon and I spent our weekends window
shopping for the furniture we wished we could afford and driving around town
dreaming of the house we would buy someday. We became even happier when our
extraordinarily beautiful baby boy Dov was born.
That summer, we met Jon's parents at the Jersey Shore for our vacation. We
walked along the beach holding hands with our little baby riding in a pack
on Jon's shoulders while Billy ran alongside us, drawing in the sand with a
stick, and we were happy. Jon and I talked about all the things we wanted to
do in life, about our careers and decorating our house, about traveling and
how many children we wanted to have, imagining our idyllic future with an
optimism reserved for those who have never experienced tragedy.
It's hard to say exactly when we first suspected something was wrong.
Babies do get fevers and babies can seem irritable or lethargic after an
immunization, it's true. But as Dov lay in his crib, looking quiet and gray
for the next three days, I could hardly get him to nurse at all. "Just a
common reaction to the vaccination," Dr. Fleiss said over the phone
reassuringly. But Dov was never the same. He stopped gaining weight and
every time he nursed, he would writhe and cry, flailing his skinny little
arms as if nursing hurt his stomach, and I often spent my afternoons sitting
in the doctor's office. I knew something was wrong with Dov and so did Dr.
Fleiss. But no one knew what it was or what to do.
By four months old, although Dov was still breast-feeding, I could hardly
get him to nurse for more than a few minutes at a time. I tried to get him
to take a bottle, but he refused. He was barely gaining weight and his
stomach problems seemed to be growing worse by the day. Then one day, to my
surprise, he suddenly chugged down a whole bottle of soy formula. The next
thing I knew, his face turned gray, he projectile-vomited and lost
consciousness. It was the weekend, and luckily Jon was at home when it
happened. I couldn't tell if Dov was breathing as I held his limp little
body in my arms on the way to the hospital. I'd never been inside Children's
Hospital of Los Angeles before. I had no idea what a familiar place it was
going to become.
"What did you give him?" a resident bellowed at us as we carried him into
the emergency room. Dov's white blood cell count was sky high. He'd had a
near-fatal reaction to something. But what? They hooked his tiny body up to
a hundred tubes and cords and a big light shone down on him. But no one knew
what was wrong, no one could figure out what had happened to him. And no one
ever did. After a while he regained consciousness and they moved him to a
room. We stayed at the hospital for the next three days. The thought that
these events could have anything to do with a developmental disorder never
crossed our minds.
What little impression I had of autism when Dov was a baby came from a
picture I'd glimpsed on the cover of a magazine years earlier. It was a
picture of a boy who rocked in the corner all day, a boy who had withdrawn
into himself completely -- a condition they called autism, which doctors
mistakenly thought was caused by bad parenting -- a belief that tragically
persisted for over fifty years, devastating parents and preventing any kind
of advocacy or scientific research from getting under way.
Jon was worried about Dov's development long before I was and I was angry at
him for imagining such terrible things, much less saying them out loud. Why
was he so being so negative?
Jon was a first-time dad. He needed to relax. Hadn't we heard a hundred
times over that every child is different? We needed to give Dov a chance to
be who he was and not compare him to other kids. We needed to stop worrying
Still, at night, after Jon was asleep, because I didn't want him to know, I
pored through the baby books, looking for things I saw Dov doing, or not
doing, that were beginning to worry me. But I couldn't find any descriptions
that matched Dov's behavior. Maybe that meant they were insignificant,
silly, hysterical-parent worries, not even worthy of mention in the Dr.
Spock and Brazelton bibles of baby and toddler development. Or maybe it
meant they were not so common -- serious, devastating things that were too
terrible to be listed. No, I told myself, snapping the last book shut, I
wasn't going down that path.
Ever since we were kids, my sister Sarah had an intense fascination with
Helen Keller and Annie Sullivan, so when she told me she thought we should
get Dov's hearing checked, I was alarmed. But I also knew that Sarah could
sometimes overreact and make a big deal out of things.
Besides, Dov was not deaf. In fact, certain sounds seemed to frighten him
badly, like the vacuum cleaner or the blender. But there was something
strange about his hearing lately. It seemed to have changed. Loud sounds
like pot lids banging didn't seem to startle him at all and sometimes he
didn't seem to hear his name being called.
For the first time in months, I was actually looking forward to seeing Dr.
Fleiss. It was Dov's twelve-month checkup and by now most of his early
health problems had cleared up and he seemed stable.
I felt optimistic as I entered the craftsman-style bungalow, with its
rainbow-painted windows and waiting room filled with mothers on corduroy
couches breast-feeding their babies. Dr. Fleiss's practice was a friendly,
'60s-style place. Just being there made you feel like if you ate your
veggies and breast-fed, everything would be all right. I loved hearing Dr.
Fleiss's reassuring voice as he counseled his smallest patients: "I'm your
doctor, I make you feel all better."
I set Dov down in the small examination room and watched as he careened
around, chattering away in high-pitched sounds, to no one in particular. He
was wearing blue checked shorts that day and his blond hair was cut in a
bowl shape that swung to and fro as he inspected every object in that tiny
room. As I sat there waiting, I tried to make a mental checklist of the
things that I was worried about and the things Jon wanted me to ask Dr.
Dov had started shaking his head back and forth a lot lately. And we'd
noticed his cheeks turning red. He was opening and closing the kitchen
cabinets over and over. It was harder to get his attention. He seemed to
have odd reactions to sounds. I kept replaying the list in my mind to keep
it from going blank with nervousness.
At last, Dr. Fleiss came in to see us. I'd been coming to him since Billy
was a kid, his shaggy hair and wire-rimmed glasses had probably not changed
since college. We talked for a few minutes as he observed Dov and jotted
down some notes.
"Jon is worried about Dov," I started out. "I was hoping you could reassure
him that everything's okay." Fleiss just kept writing, looking up over his
glasses at Dov and writing some more. I didn't like how much he was writing.
And I didn't like how long he was taking to answer me.
Dr. Fleiss got down on his hands and knees and started talking to Dov. But
Dov didn't seem to notice Dr. Fleiss. He just kept running from toy to toy,
jabbering away and making high-pitched noises. Dr. Fleiss followed Dov
around the small room on all fours, trying to get his attention, calling his
name, offering him a ball, even tickling him. I wished Dov would just look
at Dr. Fleiss, I wished he would turn his head when Dr. Fleiss said his
Dr. Fleiss stood up. "I think you should see a specialist," he said.
"What kind of a specialist?" I blurted out, in shock.
"A developmental psychologist."
"But why? What do you think is wrong?"
Fleiss thought for a moment. "He might have some kind of a personality
"What do you mean?" I asked, stricken.
Dr. Fleiss looked away. He seemed to be considering his words carefully.
"Sometimes we see these things. The way he's running around, making those
sounds, not connecting with people."
"But isn't that the way all one-year-olds act?" I said defensively, suddenly
knowing that it was not.
I left the little craftsman house that had once been my refuge in the storm,
shaken, with a small scrap of paper in my hand. The number of a specialist
It was the Friday morning of Memorial Day weekend. Four days during which
all offices would be closed and all experts, specialists, and other highly
paid miracle workers would not be available. But this was an emergency.
I knew I should call Jon. But I couldn't do it. I would wait until he came
home from work. I would let him have a few more precious hours of not
knowing. I felt a sudden wave of relief. I had won a few more hours before
Dr. Fleiss's dreadful pronouncement would have to be shared with anyone.
Before it would spread and grow beyond the containment of my own private
fearful knowledge, to invade every part of our lives, as I sensed it would.
I was so afraid. I needed to talk to someone. My sister Lenore was a child
psychiatrist. She would know what to do. Lenore listened quietly as I told
her what Fleiss had said. How I wished she would argue with me, say that
Fleiss was out of his league, out of his mind, anything but just listen
quietly. Lenore said she knew some specialists at UCLA and she would try to
get us in to see them as soon as possible.
I looked down at my lap and saw that I was still clutching the scrap of
paper Fleiss had handed me, with that terrible, damning name and number that
irreversibly linked us to those tragic worlds I did not want to know about.
But it was too late now, the damage was done. This unlucky slip of paper
with its dreadful implications had already cast a shadow across our lives
and Dov's future. How could he have handed it to me so blithely, not
thinking of the consequences, the pain and suffering it would cause? I hated
Dr. Fleiss now.
Then slowly, as if someone else were prying open my hand, I allowed the
damp, crumpled piece of paper to unfurl in my open palm, and, like a small
bird, gave it one last chance to fly away. And when it did not alight, when
it would not vanish or burst into flames or blow away in a sudden gust of
wind, only then did I do the only thing left to do. I smoothed it out,
releasing the black hex that was embedded in those words and numbers, and I
dialed Dr. Arthur Rosenberg, the developmental psychologist.
We were lucky to get a phone appointment with Dr. Rosenberg over the holiday
weekend, his receptionist told me. But I did not feel lucky at all. The call
was set for Saturday afternoon, the next day.
I broke the news to Jon that night. We couldn't stop talking because the
silence scared us. We worried and argued, we agreed and disagreed, we
panicked and soothed, we fought and made up, we did and said everything we
could think of until we ran dry and just sat there, watching Dov sleep in
his sweet one-year-old unknowingness.
The next afternoon, we called Dr. Rosenberg. A nondescript voice answered at
the other end of the line. A generic picture snapped into my mind -- tweed
jacket, brown hair, fiftyish -- more than I needed to know. We thanked Dr.
Rosenberg for talking to us and immediately launched into all the things we
had discussed endlessly through the long night, cataloging what worried us
about Dov. We talked on top of each other, we interrupted each other, we
finished each other's sentences. Breathless and intent, all the while hoping
we were being complete idiots, we exhausted every worry, paired with every
explanation, that we could produce for the doctor in the course of one phone
call, until at last there was nothing left to say.
"It sounds like autism," Dr. Rosenberg said finally.
"What do we do about that?" Jon blurted out, incredulous.
Dr. Rosenberg cleared his throat and answered slowly, deliberately, without
emotion, as if he were prescribing an ordinary painkiller, which I suppose
he was: "Just hold on to each other and cry. Get on with your lives."
Hold on to each other? We weren't even in the same room, for God's sake.
Didn't he realize we were on separate phones? And, although I could not see
him, I knew Jon was crying. And I was sure he knew that I was crying too,
although our tears were the quiet kind. I was glad we couldn't see each
other because it was too sad and it wouldn't help us to see each other
falling apart this way. We were going to have to be strong, stronger than we
had ever been in our lives, and we both knew it.
Later that night, we did hold on to each other as tightly as we could, and
for a long time we clung to each other and just stood there. But no matter
what, we were not going to take that doctor's advice. Maybe we would cry, it
was so hard not to, but we would not just get on with our lives.
The first person we went to see was Dr. Shelly, an elegant and kindly
white-haired woman, recommended by an analyst we knew. She was a
developmental psychologist who recommended play therapy. Jon began taking
afternoons off work and we drove across town to the Palisades where Dov had
play therapy twice a week. Dr. Shelly had a room full of toys that were
supposed to make children get better: teapots for the pretend play that Dov
wasn't doing and little dolls for the social behavior that was not emerging.
She told us to hold off on going to UCLA for a diagnosis. Maybe Dov would
start to get better. We liked the sound of that; it was hopeful and
reassuring. But as the months passed, Dov didn't seem to be getting better.
In fact he was getting worse. He no longer turned when we called his name
and instead of running to Jon, he preferred to stare at the specks of dust
suspended in the shaft of light that came through the door when his father
We saw a developmental pediatrician, a child psychiatrist, a pediatric
neurologist, a metabolic geneticist, a chiropractor, and a naturopath. Dov
had blood tests and an EEG.
But no one knew what to do and no one was quite as certain that Dov was
autistic as Dr. Rosenberg had been on that first phone call.
As the weeks grew into months we were sucked into a gray tunnel of time,
waiting for some kind of pronouncement that would end our unbearable state
of not knowing; waiting for those few words of advice that could either lift
the curse off our lives or bring our world crashing down. This was not
normal sequential time, it was the painful, agonizing, slowed-down kind of
time that occurs when panic intersects with endless waiting.
Every day Jon got up and went to work and tried to do his job. And every day
I took care of Dov and played with him and tried to get his attention and
hoped that he would get better. I dreaded the ringing of the phone because I
could not explain to anyone what was happening to us. Yet somehow life went
on and although we didn't know it, I was already pregnant with our daughter,
Dov was eighteen months old when we finally went in for a diagnostic workup
at UCLA. It was dark and hot in the tiny room where I stood and watched from
behind a one-way mirror as they tested Dov. Jon was in there with him,
sitting on a tiny child's chair, holding on to Dov as they tried to test
him. They had been testing him for more than two hours when I saw they were
letting Dov out of the room and I knew they were done. Jon stood up and
scooped up Dov, and he stared for a moment at the mirror, where he knew I
"Autism," the doctor finally said.
"Autism?" I repeated. I wanted to scream at them: "That's impossible.
Einstein didn't talk until he was five. Thomas Edison didn't either, and
they were both geniuses. Most boys talk late, everyone says that. Dov's
grandfather is an accomplished attorney, the stoic type, always reading
briefs or writing them in his head, not that sociable, it could just be a
personality trait that runs in the family. Big deal." But I said nothing.
"What should we do?" Jon asked, breaking the silence.
"There are special schools," the doctor replied.
"Isn't there anything else we could do?" Jon persisted. "Special diets,
"We don't usually tell parents to do those things," the doctor said. "We
don't want to give you false hope."
Outside in the brightness of the hospital hallway, I broke down and wept on
Jon's shoulder while Dov ran up and down the corridor, making high-pitched
shrieking sounds, never tiring. "If he had cancer," I sobbed, "at least we
would know what to do."
The day after our visit to the UCLA clinic, I carried Dov into the Cheerful
Helpers group for the last time. Cheerful Helpers was a Mommy and Me group
where a few "at-risk" toddlers were included to be carefully watched by
specialists for signs of developmental delay. I'd been taking Dov to the
group for about six months and now, for the first time, I allowed myself to
admit that he wasn't doing the same things as the other children. He wasn't
playing purposefully with toys, or pointing to things, and he wasn't coming
to me for help. He made lots of sounds but he never said "Mama," or anything
else that resembled a word. I didn't know that his failure to point or wave
were classic signs of autism.
I hoped the group had forgotten that Dov's evaluation was yesterday. At
last, the hour passed and everyone was starting to clean up. The moment I
had been avoiding all morning hadn't happened. I was sitting on the edge of
one of those big cement planters, zipping up Dov's sky blue windbreaker,
when the program director, the cheerfulest helper of all, with the pink
lipstick and the degree in psychology and the three normal children, asked,
"How did it go?"
Instinctively, I picked up Dov. "They said . . ." I started out, hoping I
could stay calm. I would not let this woman see me fall apart. And yet how
could I say it and not fall to pieces? "They said he has something, he has a
pervasive developmental disorder." The Cheerful Helper gazed sadly at me and
"It's not autism," I said quickly, instantly regretting it, but unable to
stop myself from continuing, "It's . . . well, a lot of kids have it these
The Cheerful Helper pursed her lips in a half smile, or a half frown, I
couldn't tell which. Her perfectly shaped eyebrows gathered slightly in the
middle, in an expression that said, Sorry to hear that, What a shame, Too
bad, better than any words ever could.
"They say there are therapies, special schools." I added urgently. But I
could not go on. I had started to cry and I hated it when people saw me
crying. Especially here, holding Dov. They must know by now, just by looking
at me, what had happened yesterday. I looked at the faces that had already
started to gather around, then I looked at the blue sky and the medical
towers and the clouds that were not moving, and I ran out of there.
After the diagnosis, I did what I always did when I was in trouble -- I
turned to books. I have a lot of faith in books of every kind. If the
library was a sanctuary in my childhood, the bookstore was a church. For it
was there, my mother taught me, that you could turn for help in your darkest
moments, reaching out to the almighty pyramid-shaped displays of self-help
paperbacks whose titles changed weekly. It was there that my mother, who was
widowed at thirty-one with four children under the age of seven, never
failed to find answers to just about everything in life.
Autism, I discovered, would be a different story. For the first time in my
life, I could not find the answers I needed in any book.
"So I guess autism is when you can't do anything?" Billy asked as much as
said one day when he was fourteen. Billy was trying to understand the
terrible thing that had turned our household and our lives upside down; the
thing that had stolen away the baby brother he used to know. "They don't
really know what it is," I said miserably, wishing I had a better
In the first few years that followed Dov's diagnosis at UCLA, the Spanish
duplex we lived in became filled to the limit with new life and with autism.
Billy's room was crammed with teenage stuff like mannequins and music
posters, and the rest of the place was bursting with baby furniture, toys,
and books. Autism-related paperwork covered the dining room and kitchen
tables and every other surface in the house. Therapeutic toys and special
swings and a minitrampoline crowded Dov's room and spilled out into the
hallway, and an endless stream of therapists, baby-sitters, and housekeepers
came and went all day long. By the time Dov was diagnosed, his sister,
Miriam, was born, followed by Gabriel, three years later. Billy moved out as
soon as he was old enough to get his own apartment. I can't say I blame him;
our lives were one big emergency with no end in sight.
When Dov was eight years old, we bought the wonderful old house we live in
now. It had been a convent for fifty years before we moved in, and I
secretly hoped that all the praying that took place there might hasten the
miracles we were working and praying for now. There is a sun porch that
joins our bedroom and Dov's room; the walls are painted an intensely bright
color called mango. This is where I have spent much of my time these past
several years, surrounded by books and scientific journals, at my computer,
searching through databases and across the Internet for the right molecules,
the right genes, the right concepts, but most of all trying to find the
researchers who will figure out autism. And yet I am certain that if I had
not met Soma and Tito, I would never have found Dov.
Just about the time Dov was born, Soma must have been dragging Tito from
doctor to doctor in India, in search of a diagnosis. And probably, just as I
was taking Dov from specialist to specialist, Soma must have just begun to
succeed at getting Tito to communicate. And probably, just as I might have
been eating a mango at my kitchen table, Soma may have visited her childhood
home and sat in the courtyard shaded by the mango trees, real mango trees --
the Alfanso type, not Langra mangos like we have here, according to Soma.
Probably just as I was selecting this very color for these very walls, Soma
could have been standing under a mango tree, waiting for a bus, in India,
with her son Tito, carrying a sheaf of his poetry under her arm. And
probably Tito must have written "Mutilated Spirit" right before we met each
Mutilated spirit still breathes in
Moment by moment
Mutilated spirit still breathes out
Event after event.
Every event gets counted within
One and two and three
As the moments pass unstill
Under the mango tree.
--From the poem: "Mutilated Spirit,"
by Tito Mukhopadhyay
Copyright C 2006 Portia Iversen
Author Portia Iversen, an Emmy-winning art director, has been a vigorous proponent of autism research since her son Dov was diagnosed in 1994. Together with her husband, Jon Shestack, she established the Cure Autism Now Foundation, one of the largest nongovernmental funding resources for autism research worldwide. She lives in Los Angeles with her family. For more information, please visit www.strangeson.com.
Learn more about Tito Mukhopadhyay, his beautifully written and insightful autism poems, his desire and journey to help other autistics through autism research. Click here and get Strange Son for your home autism books library today.
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