1. Mothers on a Mission
LYN REDWOOD KNEW she was pregnant at the first sip of white Zinfandel. In her previous two pregnancies, the taste of alcohol had taken on an unpalatable, almost metallic quality, and now, here it was again. Lyn gagged and set down the frosty wineglass. Her husband, Tommy, looked at her with a slight note of alarm. But Lyn just closed her eyes and waited for the nausea to subside. Then she stood up and smiled.
"I'm fine," she said quietly to Tommy. "Everything is just fine." It was Memorial Day Weekend, 1993, and the couple had driven from their home outside Atlanta across the steamy deep South to the hamlet of Columbus, Mississippi, for a visit to Tommy's parents. On the five-hour ride home, Lyn could think of nothing but the taste of that wine. She was excited, but wanted to make sure before saying anything to Tommy.
Lyn smiled at the prospect of a new child. She knew that Tommy adored her children, Drew and Hanna, from her previous marriage. But she also knew that it must be difficult at times to raise someone else's kids.
When they got home, Lyn ran upstairs to the master bathroom where she kept some pregnancy tests. The Zinfandel had not deceived her. She really was pregnant.
Lyn went downstairs to tell Tommy the news. He was overjoyed. Now hewould have a child who would call him Dad instead of Tommy. The new baby would complete the happy picture.
Lyn was an attractive woman with cocoa-colored hair and soft, almost catlike brown eyes. She met Tommy in 1986, in Birmingham, Alabama, where she was completing her MS in nursing and he was a young med student from the University of Mississippi with a handsome smile, dark hair, and an athletic physique.
The two were married in 1987, and Tommy wholeheartedly accepted Lyn's children, Hanna and Drew, as his own. In 1991, the young family moved to Atlanta, where Lyn began work as a family nurse practitioner, and Tommy got a job in the ER at Newnan Hospital, outside Atlanta.
The past six years had been almost dreamlike for the Redwoods. They had recently put the finishing touches on a three-story, wood and stone contemporary home on nine acres of hardwood forest in tiny Tyrone, Georgia, thirty minutes south of Atlanta. A rural small town, Tyrone looks a lot like Mayberry from the Andy Griffith Show (except for the Confederate symbol on the old Georgia state flag that still flutters above the American Legion hall).
The kids had never been happier. Hanna and Drew were excelling in the gifted program of the local school, where Drew entered kindergarten at the third-grade reading level. Life was sweet in the new house, with its free-form pool and flat stone terraces, its hiking trails through Georgia pines and open pastures, and the covered wooden bridge that Lyn and Tommy built over Trickum Creek, which meanders lazily across their land.
Lyn's third pregnancy was perfectly normal, by all measurements. The only thing to set it apart from the first two was that Lyn, whose blood type is RH-NEGATIVE, was given two injections of Gamalin brand Anti-Rho(D) globulin, at fourteen weeks and twenty-eight weeks of gestation. About 15 percent of all women have an RH-negative blood type and, if the fetus is RH-positive, as was the case with Will, the mother could produce antibodies against the child's blood type. This in turn could create potentially deadly complications in subsequent pregnancies. Anti-Rho(D) globulin staves off that disaster. (Lyn received a third injection immediately after Will was born, in case there had been any undetected mix of blood during delivery.)
In Lyn's third trimester, she was told the pregnancy was breech. When she entered labor, in February 1994, a baby boy appeared with two feet sticking out. It was Groundhog Day, and the Redwoods would later joke that their son had seen his shadow and tried to run back in. The doctors ordered a C-section and the procedure went well. A beaming baby boy, named Will Redwood, arrived into the world happy and healthy.
Will, with his brown hair and cool, gray-blue eyes, was an exceedingly good baby. Rarely fussy and almost always smiling, he seemed alert andengaged in his new world. Will chuckled and grinned whenever Lyn tickled him, and he loved to play tag with the family cat, crawling around the living room and squealing with delight whenever he "caught" the kitty. He was an unusually inquisitive and adventurous boy. At eight months, he learned to use his baby walker, and wandered around the ground floor of the house exploring every corner he could get into.
Will breast-fed without trouble and met, or exceeded, normal developmental landmarks. He began speaking right on schedule, and learned new words like mama, daddy, and kitty cat almost daily. By twelve months, he could play Little Tykes basketball with his brother, Drew. Lyn and Tommy watched in awe as Will toddled to the hoop and slam-dunked the ball home. Each time, he turned to his parents, clapped his little hands, and cried, "Yea!!"
Lyn, the experienced nurse, made sure that Will received every vaccination on the U.S. Childhood Immunization Schedule. She couldn't help but notice that kids were getting a lot more shots now than Hanna and Drew had received in the 1980s. At two months, four months, six months, and one year, Will was brought in for a "well-baby" visit, each time receiving multiple injections against dangerous diseases like hepatitis-B, Haemophilus influenzae type B (Hib), or diphtheria-tetanus (DT).
Shortly after Will's one-year visit, he developed strep throat, which is rare in young infants. Then he developed rotavirus, a gastrointestinal bug that can cause severe pain and discomfort in a child. One Saturday, while Lyn had a good friend visiting for the weekend, Will vomited on the living room floor. Lyn didn't think too much about it, but a few hours later Will vomited again, and it quickly got to the point where he couldn't keep food down at all. Worried, Lyn called her pediatrician, who prescribed an antinausea suppository. The pediatrician said that rotavirus was fairly common in children. He was not unduly alarmed.
The next day, the diarrhea began. It quickly got so bad it would fill the toddler's diapers and run down his legs in burning, acidic streams. But there was no treatment for rotavirus, and the only remedy Lyn could think of was to give Will rice-and-glucose water every hour or two, to replace the electrolytes he was losing. The diarrhea drained from him like foul floodwaters and the vomiting wracked his small body. Even though the worst symptoms abated after a week or so, Will never really made a recovery to full health. He ran periodic and unexplained fevers. He seemed under the weather all the time.
At around seventeen months, Will developed an upper respiratory infection, like a very bad cold, and began wheezing uncontrollably. The Redwoods rushed him to Peachtree Regional Hospital, where he was immediately admitted and given IV antibiotics, steroids, and other medications. Lyn stayed with her son for two days, sleeping with Will inside his misty respirator tent.
Will also lost an alarming amount of weight. He had, for all practical purposes, stopped eating. Lyn put him on a strict regimen of vitamins and supplemental nutritional treatments. And even though she had weaned him from the bottle, she found it was now the only way to get real food (in the guise of meal-replacement shakes) inside the boy.
Once spritely and impish, Will now sat motionless in his infant seat, gazing at videos in dogged, unnerving repetition. And there was something else, something ominous that transpired during this period--something that Lyn and Tommy noticed only gradually, and didn't pay much mind to because Will had been so darned sick.
But there was no denying it. Will had stopped talking.
"Oh, don't worry about that," Lyn was told by friends and family. "Boys always talk late." Tommy, for instance, hadn't started speaking until he was three, and he turned out to be a skilled physician. Lyn's first son, Drew, hadn't been a late talker. So maybe it was something in Tommy's genes.
There were other signs of trouble, of course, signs that Lyn only realized several years later. One weekday morning, when Will was in his infant seat, staring at space, Lyn walked directly in front of him, bending down until her face met his, her deep brown eyes just inches from Will's. She smiled, she waved. But Will just sat there, looking straight through his mother.
"My," she marveled. "You have incredibly intense concentration!"
Years later, Lyn would scoff at her own naïveté. Loss of speech and lack of eye contact are classic symptoms of autism. But the disorder, still so rare at the time, was way off her maternal radar screen. Despite her medical background, Lyn had never met an autistic kid in her life.
AUTISM CONTINUED to be the last thing on their minds as Lyn and Tommy witnessed Will's increasingly baffling behavior. He grew acutely sensitive to sound, and would cover his ears and yelp in pain if the TV were turned up. Going to Drew's basketball games was always an ordeal. When the buzzer went off, Will threw his hands to his ears and screamed loudly enough to pierce the crowd's roar. Lyn learned to watch the timer and cover Will's ears in advance.
Then there was the incident at the Little League game. One muggy evening in Tyrone, the Redwoods were at the local ballpark taking in one of Drew's games. Will, the restless toddler, kept trying to get up and wander around the bleacher area. Finally, after several attempts at trailing her son and returning him to his seat, Lyn decided to let Will go, just to see what would happen.
"I'm going to just sit here and see how far he goes before he realizes he'sout of the ten-foot radius or so," she said to Tommy. Will just kept wandering aimlessly away, far from the stadium lights. He was a good fifty feet away from his parents, heading nowhere into the night, before she ran to fetch him. At that point the Redwoods knew: if they didn't keep an eye on him every second of the day, Will would be gone.
Will's hearing continued to deteriorate. In September 1995 he was referred to a pediatric ear-nose-and-throat specialist at Emory University, who poked and prodded the boy like some pet science project. He said fluid had accumulated behind Will's eardrums, and the pressure was causing severe hearing loss. Will would need tympanostomy tubes surgically implanted in his eardrums in order to drain the fluid, relieve the pressure, and restore hearing.
On the morning of the operation, Lyn arrived at 5:00 A.M. with a very nervous, hyperactive little boy. The nurses slipped Will into a pale blue gown and Lyn let them walk him up and down the hall. Even at that early hour, Will could not sit still.
The procedure went well. But the doctor remarked on how little fluid he found behind the eardrums. It perplexed him. The surgery might not have been enough to address Will's difficulties, he said. Perhaps Will's problems were not related directly to hearing. There might be a deeper problem with his communication abilities. Will would need speech therapy immediately.
In October 1995 an assessment confirmed that Will's language skills were exceedingly low. At the time, all he could do was make baby sounds. He could verbalize, but none of it made any sense. It came out all garbled. His speech and language skills at twenty months were those of a six-month-old. On expressive language, he scored at the level of a five-month-old. Will was examined by a neurologist, who ordered an MRI, EEG, and chromosome studies, all of which returned normal. But the boy was not making any real progress. No one had any idea what was wrong.
Mostly, the Redwoods felt relieved. Their biggest fear had been that a brain tumor or some other type of malignancy had caused Will's regression. But nothing was wrong. There were no brain abnormalities, no damaged chromosomes that might cause mental retardation. Will's speech delay was just a fluke, an easily denied sign of things to come.
When Will was two, Lyn enrolled him in a new nursery school program run out of the local New Hope Baptist church. She assumed that leaving him in a classroom with other toddlers would naturally help his speech develop. But when she took Will in on the first day, she discovered that most of the other kids in the program weren't talking, either.
"My God," Lyn muttered sadly under her breath. "What on earth is going on around here? So many kids who aren't talking. Is there something in the water?" Lyn never found out what was wrong with the kids, but seeing childrenwho were not unlike Will, for the first time ever, left her with an odd, slightly guilty sense of comfort.
When Will was three, in 1997, he entered a special program run by the local county school system for kids with advanced developmental disorders. It was held in a public elementary school, a modern, clean, brick-and-steel affair that had been built just two years before, where the "typical" kids went. There were six kids in Will's classroom, all of them with developmental disorders. One afternoon, about a week into school, Lyn came by to pick up Will. She'd arrived early and decided to peek through the window. What she saw horrified her.
A teacher had strapped Will into a wooden chair with plywood panels going up the sides. It looked like something from One Flew over the Cuckoo's Nest, Lyn thought. She had no idea that such contraptions existed. She rushed into the school to hear Will's spine-chilling screech echoing from the walls. She tore down the hallway and burst into the classroom, fuming.
"What are you doing!? I don't want him in that chair! Get him out, right now."
"But Mrs. Redwood," the teacher sputtered. "He won't sit still for circle time."
"Fine," she snapped. "I will come and hold him, every day if need be. He can sit on my lap." Lyn was working weekend shifts in order to free up time to look after Will. For the next several months, she came to school every day for circle time.
One day while collecting Will at class, Lyn struck up a conversation with the mother of another boy enrolled in the program. The woman regarded Will intently, one eyebrow arched. "You know something?" she said, wary but kindly. "Will looks and behaves very much like my son. He has the same demeanor."
Lyn was intrigued, even a bit heartened. Perhaps this mother knew the secret to unlocking Will's locked-in world.
"Really. And do you know what's wrong with your son?"
"Sure," the woman said, matter-of-factly. "He has autism."
THERE WAS NO WAY that Will had autism, Lyn still believed. He didn't flap his arms, didn't run in circles or bang his head on the walls like the autistic kids she had seen in some of the more graphic news programs. But the mother at Will's school gently persisted. She told Lyn that a new behavioral therapy was helping children with developmental disorders.
"There's this really great program on the north side of Atlanta," she informed Lyn. "They're doing amazing things with our kids. You really have tocome see for yourself." Lyn agreed to go. She was so desperate by now, she would do anything for an effective therapy, even if her son didn't have autism.
The program employed a treatment method called Applied Behavior Analysis (ABA), which was developed by Dr. Ivar Lovaas in the 1980s. Based on the revolutionary theory that autism is treatable, ABA has shown remarkable success in children with autism and severe developmental disorders. Some of the children treated with this method go on to achieve normal intellectual and cognitive functioning. Lyn went to sit in on an ABA session being held in the private home of an Atlanta mother with an autistic son. He was two years older than Will, and seemed to be doing extraordinarily well. Lyn watched, dumbfounded, as the boy recited his ABCs and read aloud from a storybook.
Proper ABA therapy requires a team of experts to work one-on-one with the affected child for hours at a time. The treatment is rigorous, exhausting, and prohibitively expensive; the cost for one year can reach a hundred thousand dollars. The Lovaas method uses behavior modification principles to encourage "good" and appropriate behavior--proper language, communication, and play skills; better observation; and outward affection--while repressing and discouraging problematic behavior like withdrawal, aggression, inattention, and temper tantrums. ABA therapists then break down each desired skill into small, discrete steps. This "discrete trial training" systematically drills each step into the child's psyche through endless hours of painstaking, repetitive conditioning. Teachers warmly reward children for good behavior, ignore them when they exhibit bad behavior, and remove them to "time-out" when things get out of hand.
The method is not without its critics, who say it is little better than training a dog. But many parents have claimed complete success with ABA therapy, and it is the only nonmedical autism treatment endorsed by the U.S. Surgeon General. Lyn was now genuinely excited, for perhaps the first time since Will got sick. She returned home and immediately called the woman in her school district who handled special services, to request that they provide ABA therapy to Will.
"Well," the woman said, "we can only do that for children with autism."
"But, but ..." Lyn interjected.
"Don't worry. Will's eligible."
"What do you mean?" Lyn asked. "You're saying he's autistic?"
"Mrs. Redwood, to be honest, we have sort of thought that all along."
Lyn was stunned. "Why didn't you tell me?"
"As teachers, we can't diagnose," the woman said. "The children must be diagnosed by the school psychologist, but they don't do exams until the kids are five."
"You know," Lyn said, "this is like someone having cancer, but no one wants to tell you because they don't want to upset you."
"I know, Mrs. Redwood. I'm sorry. But Will is eligible."
In November, the school met with Will and Lyn. All the specialists were brought in: Will's speech and language pathologist, his two teachers, the school district's autism coordinator, its director of special education services, and the principal.
"Mrs. Redwood, what are your goals for your son?" the director asked.
"I want him to know his name," she replied. "That is my first goal."
"And your second goal?"
"By the time he starts kindergarten," she said, smiling, "I want him to be indistinguishable from his peers."
Heavy sighs broke the silence, but Lyn held fast. Her son did not have an official diagnosis, and she was going to cling to her faith that his dire condition might only be temporary. The group agreed that the school would provide ABA therapy to Will, and train some of its teachers in the unfamiliar method.
Within weeks, Lyn began delivering Will to school an hour early every day for intensive one-on-one therapy with teachers. He received another hour of ABA at school after class, then came home, ate, and completed another two hours of therapy.
By this time, Lyn's denial about Will's autism was beginning to crumble. Lyn and Tommy purchased a copy of a Lovaas handbook written by Catherine Maurice, who also wrote the groundbreaking book Let Me Hear Your Voice, in which she detailed the amazing story of curing not one, but two of her children with autistic disorders. Lyn would later come to refer to the handbook as her "autism bible." Lyn learned that parents aren't always the most suitable ABA therapists for their own children, though some parents have tried. So the Redwoods used the manual to train two other people to take on the task, a local unemployed college graduate and a teacher's aide at a school for children with developmental disabilities. For Lyn, it was often difficult to watch. Will wasn't always the best student. "He does some of it for a while very well," she told Tommy, "but he needs it to be very fast-paced, and he needs the rewards all the time." When that didn't happen, Will would wail like a trapped animal.
Will began to log modest progress with his ABA home-style therapy. During the next few years, he would learn his name, as Lyn had hoped. Eventually he started to learn his colors, and then the alphabet.
And just as slowly, Lyn and Tommy came to accept that their son was afflicted with some form of autism. Despite all the experts who had examined him, ultimately it was the medically trained Redwoods who diagnosed Will themselves. One night in mid-1998, they got out the DSM-IV (Diagnosticand Statistical Manual of Mental Disorders--Vol. 4) and compared Will's symptoms with those listed in the book of mental maladies. Lyn and Tommy concluded that Will had pervasive developmental disorder, not otherwise specified (PDD-NOS), a moderately severe neurological illness that lies within a constellation of diseases known as autism spectrum disorder, or ASD.
ASD, which includes "classic" full-blown autism, PDD-NOS, Rett syndrome, and Asperger's syndrome (the so-called Idiot Savant malady popularized in the film Rain Man), is a neurodevelopmental disorder that emerges early in life. Children with ASD exhibit an assemblage of seemingly unrelated features, with wide variation in symptoms and severity. In the most notable cases of classic autism, children flap their arms, bang their heads, walk on their toes, line things up in rows, or spin in endless circles.
Will showed none of those traits. But many ASD symptoms described him well, such as severe social impairment, verbal and nonverbal communication problems, repetitive behaviors, movement disorder, sensory dysfunction, and cognitive impairments. In many children, and Will was no exception, there are also unusual gastrointestinal difficulties and immune abnormalities.
Onset of the disorder, as in Will's case, occurs before thirty-six months of age. Some children are clearly autistic from birth. But today, most cases appear only after a year or more of normal development--followed by clear regression or failure to progress.
Autism was long thought to be purely genetic in origin. But there is now an emerging belief that many cases are the product of an interaction between some type of genetic predisposition and early exposure to environmental triggers, called "insults."
Like most Americans at the time, the Redwoods assumed that autism was an extremely rare disease. Lyn was soon to learn otherwise, however. From the 1940s, when autism was first described in the literature, until the late 1970s, it had indeed been rare. The U.S. incidence was just 1 to 3 births per 10,000. But by 1998 the figure had climbed to 20 to 40 births per 10,000. Today, there are accounts of 60 to 80 cases per 10,000 children (or 1 in 166) reported in some states, including New Jersey and California, making it more common than multiple sclerosis, cystic fibrosis, or childhood cancer.15 Could there have been something in the water, as Lyn had joked to herself back at the Baptist church, or was there something else at play? Had some other "insult" damaged Will and so many other kids?
SALLIE MCCONNELL met Thomas Bernard in 1975 when they were freshmen at Harvard. The Bernards married in 1979 and eventually settled into a loftlike apartment on East Twenty-third Street in Manhattan. Tom landeda handsomely paid job on Wall Street, at Salomon Brothers, while Sallie got work with TMP Worldwide, an ad agency that specialized in regional Yellow Page directories. The Bernards were on their way to building significant wealth.
In 1986, Sallie took her business skills and started a market research firm, Advertising Research Corporation, now called ARC. Based in Cranford, New Jersey, the twelve-employee operation manages a network of focus groups, telephone studies, shopping mall questionnaires, and surveys through the mail and on the Internet.
In 1987, Sallie learned she was pregnant--with triplets. The Bernards went shopping for a real house outside the city, with trees and a lawn and a garden for the new arrivals. They purchased a large Tudor in the affluent suburb of Summit, New Jersey.
The triplets were born five weeks premature in September 1987, at Manhattan's Lenox Hill Hospital. All three were underweight, but Bill was born perilously so. Fred weighed in at 5¾ pounds, and Jamie was 4¾ pounds, but Bill tipped the scale at just 3 pounds. Healthy Fred went home right away. Jamie, who needed to gain just a few more ounces before release, stayed a couple of days longer.
Bill was less fortunate. Diagnosed with anemia, he was given a blood transfusion and remained in the hospital for nearly four weeks. It was a trying time for Sallie; even with hired household help, the young mother and businesswoman found herself torn between the clamors for attention from two babies at home, demanding clients at work, and a very sick boy in the hospital.
When all three sons were safely at home, Sallie began to notice that Bill was developing a bit more slowly than Fred and Jamie. She kept track of the boys' milestones. Fred and Jamie vied to be the first to raise his head up, first to roll over, first to stand up, and first to fall down. "It was always within days of each other," remembered Sallie, who retains a youthful freshness, with sea-green eyes and honey-colored hair. But Bill was always at least two weeks behind the other boys. He couldn't seem to catch up.
By the time the Bernard triplets turned two, they were beginning to speak, and Sallie kept track of the exciting progress. But as usual, Bill lagged behind his brothers. In one typical week, Fred would log in twelve new words, and Jamie would learn maybe eleven. But Bill, though he was learning, typically would have a new word list of five.
Sallie also made sure the boys completed their well-baby visits, and had their full range of required vaccinations. But given their small birth weights, the pediatrician decided to push back the first round of shots, from two months to four months.
Over the Christmas holidays in 1989, when the boys were around twoand a half, Tom's parents flew to New Jersey for a visit. On a snowy night when the extended family was enjoying a roaring fire in the large living room, Tom's father, Fred, was horsing around with the triplets. Jamie and little Fred were squealing with glee, but Bill seemed distant, losing interest. Later, when Sallie got out the Tinker Toys to settle the boys down, Bill had a tough time inserting the sticks into the wooden wheels. He grew inconsolable until one of his brothers came to help him out.
"I must tell you," Fred confided in Tom and Sallie later that evening, after the boys went to bed, "I think something might be wrong with Bill. He's a little different than the other boys. He doesn't play with the same intensity they do."
The young couple brushed aside Fred's concerns, having convinced themselves that Bill would eventually catch up with his siblings. He just needed some time, that's all. Bill would be fine.
But Bill wasn't at all fine. By New Years, 1990, he began to withdraw from the world. He began screaming and tearing around the house as if he'd been set on fire. He quickly went downhill from there.
The Bernards, now aching with worry, brought Bill in for a full battery of neurological and cognitive tests.
"Mrs. Bernard," the doctor said, "I'm afraid we've found a number of things wrong."
"I'm ready, Doctor," said Sallie, whose trademark was a cool and calm demeanor, regardless of the situation. "Go ahead."
"The primary dysfunction we found was dysphasia. Do you know what that is?"
Sallie said she did not.
"It's a rather severe type of language disorder," he announced. The doctor went on to discuss some of the other problems he had diagnosed in Bill, including hyperactivity and attention problems.
A few days later, when Sallie received the full written report in the mail, she noticed that the doctor had scribbled in his notes: "Possibly watch for autistic-like tendencies." But the official diagnosis stood at language disorder. Sallie was concerned, but not overly alarmed. "Language disorder" sounded serious, but surely nothing that could not be overcome. Then she went to look up the definition of dysphasia in the dictionary. What she read was unsettling: the disease, it said, is "An impairment or loss of speech or ability to understand language, caused by brain disease or injury."
SALLIE COULDN'T GET those dreadful words, "brain disease or injury," out of her own restless mind. Bill had never been seriously injured, she thought,and certainly there was nothing catastrophic that could have injured his brain. But brain disease? Could such a thing have afflicted Bill, yet leave his brothers, with whom he shared the womb, unscathed? Sallie spent the next several months combing the libraries and bookstores of northern New Jersey, buying every book she could find about speech disorders, attention deficit/hyperactivity disorder (ADHD), brain disease, and aphasia. But she didn't buy anything on autism. Despite the doctor's note to "possibly watch for" autistic tendencies, nobody else had mentioned the disease. It never occurred to Sallie, until Bill was officially diagnosed, that the source of her son's distress was autism.
Evidence of that distress began presenting itself daily as Sallie and Tom frantically tried to figure out what was racking their son. Bill's speech problems only grew worse. He stopped learning new words, and the words he did know quickly became unintelligible. Sallie couldn't understand him anymore. Bill wanted to talk, she could see that, but his articulation was so poor she could no longer make out a word.
The bad news just kept coming. Bill began losing fine motor control. Then his eating habits became downright ungainly, even for a three-year-old. Sallie snapped photos of the triplets sitting around the kitchen table after a meal. Fred and Jamie cleaned their plates, keeping themselves reasonably tidy. But Bill looked as if he'd dumped his food on his head, staining himself with the bright hues of a childhood dinner, which splattered down his bib and onto the table. The poor kid, obviously floundering, had a hard time getting food to his mouth.
Not long after that, playing with building blocks, something Bill had always loved to do, became impossible for the painfully clumsy child.
Bill's visual perception was next to falter. Sallie noticed that when Bill was climbing stairs with gaps between the steps, he would freeze in fear. She wondered if maybe he couldn't make out the spatial difference between the gaps, because it seemed to panic him.
By the summer of 1990, Bill had grown somewhat distant and often sad. During the first months of preschool, he really started to deteriorate. By December he had grown squirrelly, distracted, disruptive, even aggressive in class. He was asked to leave.
One day in the late winter of 1991, when the snow had melted and crocuses sprang from the warming earth, the triplets were out back playing catch. Sallie watched and smiled as they tossed the baseball around. But when it came time for Bill to catch, it seemed as though he wasn't seeing the ball until the last second, when it was suddenly in his face. He put his hands to his face and sobbed. After that incident, it was many years before he enjoyed playing ball with his brothers again.
Years later, Sallie learned that autistic kids often suffer from a variety of vision troubles. One trait that Bill exhibited was to avoid making eye contact with people or objects directly in front of him, as though facing the world head-on were too daunting a task.
Bill also began displaying the distinct lack of social skills found in most autism cases. He no longer expressed much emotion in his face, as though his eyes and mouth were frozen by some permanent Botox. This apparent lack of emotion is often attributed to a deep social "aloofness" on the part of autistic children. But Sallie, like many parents of afflicted kids, wondered if something else was at work here. She didn't think Bill was socially aloof; in fact, like many autistic kids, he showed exceptional signs of affection. Instead, Sallie thought there was something medically wrong with him. He was too sick to function in a social environment. If someone were recovering from heart surgery and didn't hop from bed to greet you, she thought, would you call them aloof? Sallie didn't think so.
Sallie would also learn that autistic kids, because they can't form words and can't control their body language, find it extraordinarily difficult to interact with "typical" children. She began noticing this with Bill. It wasn't that he didn't like other kids, he did. But in a group situation, Bill felt more comfortable, and less bewildered, quietly wandering off into his own little realm.
The next several months were spent at endless appointments with speech therapists, special ed teams, and four or five neurologists. During each visit, Sallie heard the same thing: her son had developmental problems that were "pervasive." But she had no idea what the hell pervasive meant. She plowed through the indexes of every book she had bought. In those days, there was nothing under the heading pervasive.
What the specialists were trying to tell her, she only realized years later, was that Bill's problems were autistic. Yet no one wanted to use that word. If anything, Bill's teachers, his child study team, and his therapists said things like, "Oh no, don't worry about that. He doesn't have that. He doesn't have autism."
In late February 1992, during yet another visit to yet another child psychologist, this time at Columbia University in Manhattan, Bill was diagnosed with PDD-NOS. Sallie and Tom struggled home through rush hour traffic on the Jersey Turnpike, discussing the news. They were, in an odd way, slightly elated. Not that autism was a good thing, but at least it was something, a logical explanation, a solid diagnosis. "Tom, this is a good step," Sallie said. Tom looked at her as if she'd gone off the edge. How could there be anything good about autism? "Because," she said, "now we have something to work with. Now we can form a plan of attack."
The upbeat emotions the tough businesswoman brought to bear on thesituation that evening were short-lived. Sallie went out to scour the bookstores again (there was no Internet to speak of yet), buying up everything on the subject she could find. What she read depressed her. Autism was genetic, according to all the books. Onset was believed to occur early in pregnancy, after which time the damage was already done. And the damage, she read over and over again, was acute, irreversible, incurable. Autistic children could look forward to a lifetime of struggle, isolation, and failure. They would require lifelong specialized care, at great cost. Many ultimately would face institutionalization, where they might live out their days in their own mystifying worlds. Sallie could not stop imagining such an atrocious future for her little boy. That night, as Tom held his wife gently in bed, the unflappable executive cried herself to sleep.
SALLIE BERNARD was not one to give up. There were autism parent support groups, autism research organizations, and autism medical societies out there. Sallie wanted to join them all. She became a member of the New Jersey Center for Outreach and Services for the Autism Community (COSAC), and the Autism Society of America (ASA), a national network founded in 1965 and now a leading source of autism information and referral, with some two hundred chapters nationwide.
Within weeks, Sallie found out about ABA therapy and the pivotal work of Dr. Lovaas. She was thrilled by its promise. But she was also filled with dread. By then, Bill was getting a little too old to derive any significant benefit from the therapy. All the published research indicated that ABA therapy should commence before the child was five, and ideally by three. Bill was almost four and a half.
Sallie and Tom wanted to try anyway. They engaged the services of a Livingston, New Jersey, psychologist trained in the Lovaas method. He worked with the couple on Bill's ABA therapy at home. They focused on stopping "bad" behavior more than on academic pursuits, such as teaching Bill his ABCs.
Sallie knew that Bill would have to return to school. But first she would have to find a place that would take him, "quirks" and all. In New Jersey, in the early 1990s, that was no easy task. Eventually they found the Developmental Learning Center in nearby Madison, an attractive bedroom community on a low-rise ridge. Bill made minor progress there. But he was still disconnected from others, and still not speaking.
When Bill was six, his parents transferred him to the local school to see if he might do better around large numbers of typical kids. The school had aspecial ed teacher trained in the ABA approach, a situation that worked out remarkably well. But within two years, the ABA teacher became pregnant and left.
The next year or so was awful as Bill tried to adjust to a public school special ed class. It didn't work. The thoroughly untrained teacher barked at him or banished him to a small corner of the room, when she wasn't ignoring him. Sallie returned her son to the Developmental Learning Center.
But there was something very different about the place now. When Bill first went there, he was one of a few dozen kids in a very small school. Now the Center had mushroomed to encompass three large campuses. It provided education services to hundreds of newly diagnosed autistic children. Where on earth, Sallie wondered, had all these kids come from?
By the fall of 1996, Sallie began to suspect there might be some medical explanation for Bill's autism. She was beginning to wonder if genes could be the only explanation. If autism were purely genetic, then why would Bill's learning center have seen such explosive growth in students in just a few years? To Sallie, autism was starting to look like some kind of epidemic. And she knew there was no such thing as a genetic epidemic.
From that point on, Sallie's reading list became increasingly technical. She hunted for medical journals and other published scientific papers on the biology of autism. She was especially keen on investigating its "etiology," or cause.
In late December 1996, while bracing for another New Year of upheaval, Sallie sat down for a rare moment of peace, clutching a glass of Chardonnay and a copy of Time magazine. It was the "Man of the Year" issue, honoring AIDS researcher Dr. David Ho. The scientist was selected for his groundbreaking work in lifesaving drugs, such as protease inhibitors to halt the replication of HIV. Damn, Sallie thought. If they can do that for AIDS, then they can do it for autism.
By early 1997, Sallie had been invited through her fledgling autism network to attend a meeting of a new group called the National Alliance for Autism Research. She was also mailed a flyer from yet another neophyte group. It was the state branch of Cure Autism Now (CAN), a national alliance of parents and researchers who raise money for biomedical research, education, and outreach. Founded in 1995 by Portia Iverson and her husband, Hollywood producer Jon Shestack, CAN has granted more than twenty million dollars to date.16 Among its earliest projects was to amass a gene bank from thousands of autistic individuals.
Sallie thought that the concept of parents raising money to pay for their own scientific research was revolutionary. On the day of the CAN meeting,she gathered many of the books and papers on autism she had acquired and drove down the Garden State Parkway to the Day's Inn Hotel in Kenilworth, New Jersey.
It was an electric gathering. Sallie realized she had walked into a nest of comrades-in-arms. She immediately took to the man who was organizing the chapter, Albert Enayati, an Iranian immigrant with an autistic son living at home.
Albert supported the genetic research efforts of CAN, of course. But he also held that the scientific establishment needed to be jostled from what he thought was a myopic stupor. Albert had bigger plans than holding a bunch of ice cream socials for the benefit of lab researchers at faraway universities.
Despite his soft features and gentle voice, Albert seemed to Sallie like some fiery preacher. He exhorted the parents to demand answers from the scientific establishment. "Why are there so many autistic kids all of a sudden?" he cried. "Where did they all come from? Who is going to care for them? Who is going to find treatments to mend their agony?"
Sallie was buoyed by Albert and his hot rhetoric. She signed up for Cure Autism Now on the spot. When the long day ended, she drove back up the parkway and into the green hills of Summit. She was so excited she had trouble navigating the winding roads. Soon after, Tom arrived home from work to find a keyed-up wife bursting to tell him something. "I've got the most exciting news! I'm going to be an agitator!"
Tom regarded his handsome young wife in her well-tailored suit and executive bob. He couldn't repress a chuckle. "You're going to be what?"
"An agitator, Tom. I signed up for autism. You know, activism, advocacy, tearing down the halls of government. That sort of thing."
"Oh fine," Tom muttered. A soft smile showed he was at least partly kidding. "Our own home-grown agent provocateur. That should go over big in Summit."
THINGS DID NOT GET OFF to a great start when Liz Birt gave birth to her second child, Matthew, in January 1994. It was one of the coldest days on record in Chicago, with icebergs forming on windswept Lake Michigan. Getting to Rush Medical Center with her husband had been difficult. Now Liz's doctor was telling her she would need a C-section. Liz, the steely attorney with straw-colored hair and soft brown eyes, did not hesitate for a second. She signed the papers and went under the knife.
But halfway through, something went wrong.
"Oops," she distinctly heard the ob-gyn say over the beeping machinery.
"What's that?" Liz asked, groggy but awake. "What happened?"
"Oh, not to worry," the doctor said. "Listen, we're going to call a surgical resident in here to fix this. Perhaps you'd like to go to sleep now?"
Liz trusted her doctor, and she trusted modern medicine. Whatever "it" was that needed fixing, it was best not to be awake for it.
"Sure, Doctor," she said. "Sleep. That would be great."
During the extraction, Liz's bladder had stuck to the infant. It was partially lifted up with him, and Liz required a second surgery to fix the mess. A few days later, on the day of her discharge, when the temperature had dropped to 21 degrees below zero, the hospital staff was more fretful about Liz than about Matthew. Liz's husband,17 a business executive, bundled his wife and baby in down covers and hurried them into the car. It was an awful and glorious day. Matthew seemed like the happiest baby on earth, oblivious in his mother's warm arms to the icy tempest that howled outside. No one, of course, had any idea that Matthew would be coming back to the hospital many times.
Liz spent the next six weeks sick at home, hauling around a catheter and urine bag. It was a painfully sluggish recovery. With the bladder mishap to heal, and two active infants to care for, Liz was taxed from the start.
When Matthew was eight weeks old, and Liz was still regaining her strength, she went outside, bundled up against the 62-degrees-below windchill factor. She dug her car out from a solid mountain of snow and drove with Matthew through the Siberian landscape and downtown to the pediatrician's office.
Liz's husband had been called to South America on business. But Matthew was due for his first round of childhood inoculations. "I'm a good mom," Liz told herself. She felt like crap and it was bitterly cold. But she was determined to get her baby vaccinated.
Over the next several weeks, Liz improved and so did the weather. Matthew continued on his normal infant trajectory, and never had any serious medical issues. Liz and her husband were deliriously happy. The first time Liz breast-fed Matthew, she sighed happily and thought, My God, what a miracle. What a life we're going to have--raising our kids, watching them grow. She dreamed of high school and first cars; college and weddings. Liz thought she was ready for everything that was to come.
From an early age, Elizabeth Ann Birt had demonstrated a fierce streak of determination and independence. At fifteen she announced her intention to spend a year in Switzerland, to learn French and supplement her already fluent Italian and Spanish.
Liz came from a solid, loving family in Kansas City, Missouri. Hers was a quintessential Middle American upbringing. "Stand up for what you believe in," she was told. "Always try to do the right thing."
Liz married her husband in 1989, and soon after the wedding she chased her dream of getting a law degree. Eventually the couple settled in Chicago, where Liz finished her studies at DePaul University. In 1990 they bought a two-bedroom condo on the top floor of a brownstone in bustling Lincoln Park.
Liz was pregnant with her first child before she finished law school. In May 1992, right after her last final exam, she gave birth to daughter Sarah, who weighed in at a healthy 7 pounds 10 ounces. While still in the maternity ward, Sarah was given a "birth dose" of hepatitis-B vaccine. The shot had just been added to the federal list of childhood immunizations by the CDC. Liz gave it little thought, even though hep-B is transmitted almost exclusively through sexual contact and IV drug use.
Two years later, Matthew was born in that unfortunate C-section. Despite the rocky beginning, little Matt met all his infant milestones. He was crawling, sitting up, walking, and talking right on schedule. He learned to say momma and dada early, and just after his first birthday, he could count to ten.
Liz would walk him up and down the stairs, and they would count together as they went. Everyone was impressed with the bright little boy. He was extremely playful and social and engaged in the world around him. Matthew loved doing peek-a-boo with his mom, and cried whenever she left the room. His vocabulary grew as fast as he did, quickly expanding to thirty words or more. He learned to say "Sassa" for his big sister Sarah. He learned ball and hello and bye-bye in no time. His favorite game was to shout "Ready-set-go!" and tear around the house, with his mother close behind.
Liz made sure that Matthew was taken to the pediatrician on schedule for all his routine visits and vaccinations. Then, at fourteen months, he was brought in for another round of shots, including his first of two scheduled vaccines against measles-mumps-rubella (MMR). Almost immediately afterward, Matthew began to fall apart.
The first night after his shots, Matthew developed a fever that spiked to over 101 degrees. The doctor had told Liz he might get a temperature. He recommended Tylenol, which she gave him. The fever broke a few days later. Before Matthew could fully recover, he erupted in a rash of little red spots all over his torso.
Then came the ceaseless and violent diarrhea.
On Thanksgiving Day of 1995, the family babysitter, a sixty-year-old Polish woman with a thick accent named Margaret, told Liz: "Something is very wrong with baby. I know this." Matt was no longer paying attention to her, she complained. But Liz dismissed Margaret's worries, despite the nanny's dogged insistence. It wasn't until shortly before Christmas that Liz began to see the signs for herself.
One day Liz came home from work to find Matthew staring up at thelight fixtures, spinning like a top on the floor. In the next few days, she realized that Matthew did not always recognize her right away when she entered the room. A few months before, he couldn't bear to be apart from his mother. Now he often regarded her as an object of curiosity, at best.
Liz also noticed that Matthew had stopped learning new words. Not long after that, he stopped talking altogether.
Liz and her husband thought that Matthew must have developed a hearing problem. That would explain his sudden lack of communication. As for the chronic diarrhea, they attributed that to too much orange juice. Still, Liz was crestfallen: her son was going deaf.
By the time Liz's third child, Andrew, was born in June of 1996, Matthew was worse than ever. The spinning went on for hours. He would laugh uncontrollably at nothing at all. He was not the same little boy his parents once knew.
Liz brought Matthew back to Rush Medical Center for a full battery of childhood psychological evaluations. The therapists diagnosed "pervasive delay." Nobody uttered the word autism until many months later, when the official diagnosis was made: Matthew suffered from PDD-NOS, an autism spectrum disorder.
By January of 1997 Matthew had stopped sleeping through the night. He would wake at 3:00 A.M., miserable and screaming, unable to go back to sleep. At night, frantic, Matthew would scoop diarrhea from his shorts and smear it in his hair, the bedding, and the carpeting.
"I can't live like this," Liz muttered to herself and anyone else who was around to listen. Chronically drained, she would fall dead asleep at her desk. More than once, her secretary walked in to find her drooling over legal papers. Worse, Liz's husband had started a new job in St. Louis, where he spent the workweek, coming home to Chicago only on weekends. The fragile state of their family was hard on both parents. Her husband worried that the other two kids, Sarah and Andrew, were not getting the attention they deserved.
Liz was stressed and wounded by the state of affairs. She knew the other children felt neglected. Awash in guilt, Liz would buy them whatever they wanted, whenever they wanted it. She wished the kids all the things in life they deserved. What they really wanted, however, was their mom.
But there was rarely a moment away from autism. Liz was overwhelmed by the constant responsibility for Matthew. She didn't know how to care for a child with autism. And no one was around to help: no support system, no relatives within hundreds of miles.
SOMETIME DURING 1997, she can't remember exactly when, Liz hopped on the Internet and began to connect with others in her situation. Like manyparents of autistic kids turning to the net for information and advice, Liz had heard the early rumblings about a possible link between developmental disorders and vaccines, including hep-B, diphtheria-tetanus-pertussis (DTP), and MMR. But Liz did not pay much heed to the chatter. Vaccines were harmless; everyone knew that. Miracles of modern medicine, they were to be disregarded only at great peril to the individual child and the public health. Failure to vaccinate was criminal, Liz Birt had always believed.
But Liz's faith began to waver one chilly March morning in 1998, when she drove out to Chicago's western suburbs for a conference on autism sponsored by the local chapter of Cure Autism Now. She was impressed by the talk of a neuroimmunologist from the University of Michigan, Dr. Vijendra K. Singh, who said that autistic kids suffered from an apparent adverse reaction to the three live viruses in the measles, mumps, and rubella vaccine.
Singh believed that autism was an autoimmune disorder linked to some type of viral exposure, probably from vaccines. He identified a "hyperim-mune" response (exaggerated increase of antibodies) to measles virus in many autistic kids. This incorrect immune response created "autoantibodies" in the child's brain.
"I have found," the doctor announced in his formal south Asian accent, as Liz furiously scribbled notes, "that up to eighty percent of autistic children have autoantibodies to specific brain structures, in particular a brain protein known as myelin basic protein, or MBP, of the myelin sheath. This is a fatty coating that insulates nerve fibers and is absolutely essential for higher brain functions."18
Liz's faith in vaccines was crumbling, but it was neither an easy nor a natural process. The lawyer in her told her to keep an open mind, but she had a hard time grappling with the thought that vaccines could have caused Matthew's torment.
Liz turned her legal research skills to investigating all viral autoimmune disorders and their possible link to neurological dysfunction, especially in children. But it wasn't until September 1998, the day before she was scheduled to bring Matthew in for his second MMR shot, that Liz found an article in a British medical journal that was causing shock waves of alarm--and derision--on both sides of the Atlantic.
The study had appeared in the Lancet, perhaps the world's preeminent scientific journal. Its principal author was Dr. Andrew Wakefield, a young specialist in pediatric gastroenterology at the Royal Free Hospital in London. Wakefield had examined 12 children (11 of them boys), referred to him with a history of normal development followed by loss of acquired skills, including language, together with diarrhea and abdominal pain. The children were given thorough neurological, developmental, and GI exams, includingcolonoscopy and biopsy, MRI, and EEG. All 12 had intestinal abnormalities, and 11 showed "patchy chronic inflammation" in their colon. Onset of symptoms was associated (by the parents, it's important to note) with MMR vaccination in 8 of the 12 children, who fell ill shortly after immunization.19
Liz read the description and thought, "My God, this sounds like Matt." Then she remembered that Matthew had received his first MMR vaccine at fifteen months. Within hours, he'd developed that soaring fever and, a week later, the red body rash and his still-endless battle with diarrhea. At the time, it never occurred to Liz to connect the vaccination dots to her son's illness. Now, she vowed to pursue the question with haste.
Matthew was so physically ill that, at four and a half years, Liz refused to allow him to get his second MMR. His stools were abnormal and at times were green with mucus or pasty yellow in color, as if he were no longer digesting any food. Matthew was perpetually listless, like a hapless dope addict. Liz knew there was something terribly wrong. But the doctors weren't helping, and nobody else seemed to know what to do, either. She was on her own.
The day after reading the Lancet, Liz brought Matthew to the pediatrician for his regular visit, which quickly devolved into a heated confrontation. Her refusal to let Matthew get his MMR shot left the doctor livid. "Matthew has been ill with fever and diarrhea for two years," Liz said. "He hasn't slept a full night for eighteen months, and neither have I. There's no way in hell that he's getting that booster. I hope that's clear."
"Mrs. Birt," the exasperated doctor said, "if you don't let him get this shot, you're crazy. Do you have any idea what measles can do to a child?"
"At this point, Doctor, he's so badly off I'm not sure it would make a difference," Liz said flatly. "He's too sick for another MMR. I'm not going to do it."
LYN REDWOOD TREMBLED as the specialist spoke to her on the phone.
"Mrs. Redwood," he said, "there's nothing I can do for your son Will. Why don't you just take him fishing?" The words were heartless and devastating. Lyn had a difficult time steadying the phone as she listened to the doctor--the latest in a succession of overpriced experts who had examined her struggling four-year-old. Lyn was getting used to gloomy prognoses. But this was too much.
She looked down at Will. He stared through the plate glass windows straight out at nothing at all. His mouth slightly ajar, his eyes glazed over, Will seemed more out of it than normal this morning. Lyn kept silent.
"Mrs. Redwood?" the doctor said. "Did you hear me?"
Lyn heard, but wouldn't let herself speak. She wanted to growl and slam down the phone. But years of courteous southern upbringing kept her thoughts and words at a safe distance from each other.
"Fishing, Doctor?" she said finally. "That's the best you can do? Fishing?"
"Or some other activity the boy wants to do. It doesn't have to be fishing."
"What I think Will wants to do," she said, "is be a normal kid."
Lyn thanked the doctor as politely as she knew how, though she felt like demanding a refund of the five hundred dollars that she and Tommy had shelled out for his useless counsel.
She walked over to Will and scooped him up in her arms. He refused to meet her gaze. He neither giggled nor smiled. Today, he seemed to barely move at all, though some days he never stopped moving for a second. Tears welled in Lyn's eyes as she spoke to her son, trying to see if the words were registering behind that faraway face.
The boy kept his gaze out the window, as if something were stirring in the garden. But in the late September afternoon, all was still. "We're going to find out what happened, Will," Lyn vowed. Her voice tripped with emotion. Will didn't notice. "We're going to make it better. That doctor doesn't know what the hell he's talking about."
Doctors be damned, Lyn thought. She could no longer place blind hope and faith in the American medical establishment she had once revered.
It was a radical change. Lyn was now a member of her county Board of Health. And Tommy was doing his second residency in the ER at Grady Memorial Hospital, among the busiest trauma centers in the burgeoning New South. The Redwoods were believers in modern medicine. They had built their careers in the same public health establishment that Lyn was about to challenge. She did not relish the thought of battling her own profession. But the doctors had come up with no better answer than a day of fishing. What choice was there?
That afternoon, Lyn ventured downstairs and into the basement. It was crammed with dusty boxes of toys, trophies, and old schoolbooks--mementos from the childhoods of Hanna and Drew. Lyn picked through the morass until she found the computer that Tommy had bought when Will was born. At the time, Lyn could not think of a single use for such a contraption. She didn't know the first thing about computers. She had barely turned one on, let alone navigated the Internet. The whole thing seemed as mysterious and complicated as an instruction manual to a nuclear power plant.
Lyn found a disk for an Internet dial-up service that came with instructions. "I can do this," she said aloud. She lifted the computer and hauled it up two flights to her private office, perched in an aerielike loft above the livingroom floor, where she could work while keeping vigil over Will down below. It took Lyn the rest of the day to get online. One hour before Tommy got home that night, she discovered the Alta Vista search site.
Lyn typed in "a-u-t-i-s-m," and hit the enter key. That night, she learned she was far from alone.
EVIDENCE OF HARM. Copyright © 2005 by David Kirby. All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles or reviews. For information, address St. Martin's Press, 175 Fifth Avenue, New York, N.Y. 10010.