Author: Portia Iversen

 

 

Sources by Amanda Bach

Review:

 

        Portia Iversen was an award-winning art director and television writer whose life changed irrevocably when her son Dov was diagnosed with autism at the age of two. As she and her husband, Jon Shestack, desperately sought treatments for Dov and struggled to understand what was happening to him, they were stunned to learn that almost nothing was known about the disorder and only a handful of researchers were even studying it.

        Faced with little hope of a medical breakthrough in Dov’s lifetime, Iversen and her husband started the foundation Cure Autism Now, knowing that speeding up the pace of autism research might be the only meaningful thing they could do to help their son.

        While the foundation and autism research took off, Dov remained profoundly autistic. One day Iversen heard about a severely autistic nonverbal boy in India whose mother had taught him to read, write, and communicate. Soma Mukhopadhyay’s methods were unorthodox and her tools surprisingly simple —just a piece of cardboard with the alphabet written on it— but her achievement was astonishing: not only could Tito communicate, but he had an IQ of 185 and wrote beautiful poetry. Iversen realized that Tito could provide an unrivaled window into autism, and she organized a visit to the United States for he boy and his mother and arranged for some of the country’s top scientists to study him.

        Strange Son is the captivating account of these two families and how their personal journeys into autism intersected for a time and allowed Tito to explain to scientists the startling differences in his sensory perception, giving them insights that reframed the very definition of autism. Iversen writes of her quest to understand Soma’s teaching methods, of her own journey to learn how to communicate with Dov, and of Soma’s success in teaching hundreds of autistic children, posing the possibility that this could be a new form of communication as important as sign language or Braille.

        Strange Son is the powerful tale of two mothers from opposite sides of the world who, united by their fierce determination to help their severely autistic sons, have challenged everything we thought we knew about autism.

 

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;$24.95US/$31.00CAN; 978-1-57322-311-9
Copyright © 2006 Portia Iversen

 

1. 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 misunderstood.

 

“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 doubt.

 

“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 so much.

 

        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. Fleiss.

 

        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 name.

 

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 disorder.”

 

“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 to call.

 

        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 came home.

 

        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, Miriam.

 

        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 was watching.

 

“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, vitamins, therapies?”

 

“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 said nothing.

 

        “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 days.”

 

        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 explanation.

 

        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 other.

 

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 © 2006 Portia Iversen