Autism's False Prophets

Bad Science, Risky Medicine, and the Search for a Cure

Paul Offit

• Publisher: Columbia University Press
• Year: 2008
• ISBN:
  9780231517966
• Topic: Medicina
• Subtopic: Atención sanitaria

A London researcher was the first to assert that the combination measles-mumps-rubella vaccine known as MMR caused autism in children. Following this "discovery," a handful of parents declared that a mercury-containing preservative in several vaccines was responsible for the disease. If mercury caused autism, they reasoned, eliminating it from a child's system should treat the disorder. Consequently, a number of untested alternative therapies arose, and, most tragically, in one such treatment, a doctor injected a five-year-old autistic boy with a chemical in an effort to cleanse him of mercury, which stopped his heart instead.

Children with autism have been placed on stringent diets, subjected to high-temperature saunas, bathed in magnetic clay, asked to swallow digestive enzymes and activated charcoal, and injected with various combinations of vitamins, minerals, and acids. Instead of helping, these therapies can hurt those who are most vulnerable, and particularly in the case of autism, they undermine childhood vaccination programs that have saved millions of lives. An overwhelming body of scientific evidence clearly shows that childhood vaccines are safe and does not cause autism. Yet widespread fear of vaccines on the part of parents persists.

In this book, Paul A. Offit, a national expert on vaccines, challenges the modern-day false prophets who have so egregiously misled the public and exposes the opportunism of the lawyers, journalists, celebrities, and politicians who support them. Offit recounts the history of autism research and the exploitation of this tragic condition by advocates and zealots. He considers the manipulation of science in the popular media and the courtroom, and he explores why society is susceptible to the bad science and risky therapies put forward by many antivaccination activists.

CHAPTER 1

The Tinderbox

He walks as if he is in a shadow.

—LEO KANNER, DESCRIBING A CHILD WITH AUTISM, 1943

In 1938, Leo Kanner, a child psychiatrist working at Johns Hopkins Hospital, saw a five-year-old boy with symptoms he had never seen before; then he saw ten more children just like him. Five years later, Kanner published his observations in an article titled “Autistic Disturbances of Affective Contact.” He introduced his paper with a plea: “There has come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits—and I hope will eventually receive—a detailed consideration of its fascinating peculiarities.”

Kanner found that autistic children didn’t talk much; when they did talk, they often talked to themselves. He also found that they played in a stereotypical and repetitive manner; demanded their toys and clothes remain in the same place every day; had an excellent memory for lists; and lacked imagination, choosing to interpret what was said to them concretely. Kanner’s account of one boy, Donald, described them all: “He seemed to regard people as unwelcome intruders. When forced to respond, he did so briefly and returned to his absorption in things. When a hand was held out before him so that it could not be ignored, he played with it briefly as if it were a detached object. He blew out a match with an expression of satisfaction, but did not look up at the person who had lit the match. The most impressive thing is his detachment and his inaccessibility. He walks as if he is in a shadow, lives in a world of his own where he cannot be reached.”

Kanner had used the word autistic in his article because he had been impressed by the children’s self-absorption. (The word autism comes from the Greek autos, meaning “self.”) The disorder hasn’t changed. Sixty years after Kanner’s original description, Ken Curtis, a radio personality from Catonsville, Maryland, described his experience: “Autism does not announce itself in the delivery room. When our son Morgan was born things were sort of a storybook for us. We had a girl and a boy, a mom and a dad, and life was kind of like a picnic. Slowly little drops of doubt began to fall. We wondered about the way he liked to watch Disney videos over and over, or how he would spin around and make strange noises and look at things out of the corner of his eye; the way he liked to line up his toys. Drop after drop we wondered, and we waited to see what would happen. He did not talk and most of the time he did not even seem to hear us. It is like being in the mall with your child, and you look down and you discover that he is not there anymore—that sickening feeling that you get in the pit of your stomach.”

AT THE END OF HIS 1943 ARTICLE, LEO KANNER VENTURED A GUESS as to what caused autism. “We must assume,” he said, “that these children have come into the world with an innate inability to form affective contact with people, just as other children come into the world with innate physical or intellectual handicaps.” Kanner noticed that parents of autistic children had similar personality traits, describing them as “cold, bookish, formal, introverted, disdainful of frivolity, humorless, detached and highly—even excessively—rational and objective.” He believed that children were born autistic; it was fate, destiny, beyond the control of parents and doctors, and with little hope for a cure.

Not everyone was as pessimistic as Leo Kanner. The first to offer a cure for autism was Bruno Bettelheim, a Viennese-born psychoanalyst. Bettelheim believed he had found the problem: bad mothers. He reasoned that such mothers, whom Kanner had first labeled “refrigerator mothers,” caused autism by treating their children coldly, freezing them out. If they were to recover, children with autism had to be taken from their homes and thawed. Soon after his arrival in America, Bettelheim was appointed director of the Orthogenic School on the South Side of Chicago. There, by replacing what he called mother’s “black milk” with a supportive, nurturing environment, he claimed to have successfully treated forty autistic children, all with dramatic results. In 1967, Bettelheim published The Empty Fortress , in which he wrote: “Throughout this book I state my belief that the precipitating factor in infantile autism is the parent’s wish that his child should not exist.” In the late 1960s and early 1970s, Bettelheim promoted his ideas on television programs such as The Today Show and The Dick Cavett Show. But a closer look at Bettelheim’s school showed his claims of success were fraudulent. Worse: his accusations caused mothers to feel guilty and ashamed.

SINCE THE MID-1990S, THE NUMBER OF CHILDREN WITH AUTISM has increased dramatically. Now, as many as 1 in every 150 children in the United States is diagnosed with the disorder. Two phenomena likely account for the increase. First, the definition of autism has broadened to include children with milder, more subtle symptoms. During the time of Leo Kanner and Bruno Bettelheim, children with mild symptoms of autism may have been described as “quirky” or “different” or “unusual” but not autistic. Today, these children are more likely to be diagnosed with autistic spectrum disorder or Asperger’s Syndrome or pervasive developmental delay. Second, in the past children with severe symptoms of autism were often considered mentally retarded. Today, as the number of children diagnosed with severe autism has increased, the number with mental retardation has decreased.

Because the diagnosis of autism now includes children with all forms of the illness, from mild to moderate to severe, it is difficult to talk about a single cause or treatment or cure. But there is one form of therapy that is embraced by most doctors. “Behavioral treatment,” writes Laura Schreibman, professor of psychology and director of the Autism Research Program at the University of California at San Diego and author of The Science and Fiction of Autism, “is the only treatment that has been empirically demonstrated to be effective for children with autism.” Behavioral therapy uses imitation, repetition, and frequent feedback to teach children appropriate behaviors. But because some children require a high number of repetitions, programs might require as many as forty hours a week. Although these programs can help, progress is typically slow and tortuous. Worse: they can be quite expensive and are often not covered by medical insurance. “We spent thousands of dollars,” said Ken Curtis, “wrangled with the school system, hired lawyers, and lived in my grandmother’s house to save on rent.”

PARENTS OF SEVERELY AFFECTED AUTISTIC CHILDREN OFTEN FACE unimaginable emotional and financial stress. James Smythe, the father of an autistic boy in Carmel, Indiana, lamented, “Living with these children can be hell. They can destroy your entire home. You cannot keep anything nice around. They will ruin your rugs. They will move furniture around the room, push it over, break things, clear counters with one sweep of the arm. And they will do all of these things with no malice whatsoever.”

Some children with autism bang their heads, bite and slap themselves, or pull their hair. Much less commonly, they gouge their eyes, causing detached retinas, or run headfirst into walls, causing fractured skulls, broken noses, and severe brain damage. One three-year-old child had a nonstop tantrum during a thirteen-hour flight from California to Germany. Such difficult behaviors have driven some parents to seek extreme medical therapies. Unfortunately, doctors have been all too willing to comply. One doctor in Massachusetts subjects children to painful electric shocks. “If it didn’t hurt it wouldn’t be effective,” says Dr. Matthew Israel. “It has to hurt enough so that the student wants to avoid showing that behavior again.”

Some parents, frustrated beyond reason and sanity, have killed their own children. On November 22, 2006, Ulysses Stable, a twelve-year-old boy with severe autism, was stabbed to death by his father in their Bronx apartment. After killing him, José Stable reportedly called the police and calmly said, “I’ve terminated the life of my autistic child.” The police found the boy lying naked in the bathtub with a large wound starting under his left ear and extending to the middle of his throat. Two large, blood-stained knives and a meat cleaver were found in the kitchen.

On July 14, 2006, William Lash III shot and killed his twelve-year-old autistic son in their McLean, Virginia, home. Lash had been assistant secretary of commerce in the Bush administration from 2001 to 2005. A colleague later remarked, “I’m just stunned. He loved his son so much and he did everything for him.”

On May 24, 2006, in Albany, Oregon, the parents of Christopher DeGroot set fire to their small apartment, locked the doors, and left their nineteen-year-old autistic son inside. A neighbor saw the flames and called 9-1-1. “I told them to get here fast because I knew a kid was inside,” she said. The boy tried unsuccessfully to escape and later died with burns covering more than 90 percent of his body.

On May 13, 2006, Karen McCarron, a pathologist from Pekin, Illinois, suffocated her three-year-old daughter, Katie, with a plastic garbage bag. McCarron later told police, “Nothing is going to help and it’s not going to make any difference. [I] just wanted to end my pain and Katie’s pain.”

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Other parents have sought extreme therapies that resulted in their childrens’ deaths. On August 22, 2003, Terrence Cottrell, an eight-year-old boy with severe autism, was taken to the Faith Temple Church in Milwaukee, Wisconsin, for an exorcism. His mother, Pat Cooper, told investigators that she had held down Terrence’s feet while others had held his arms and head. Ray Hemphill, the preacher who had led the exorcism, pressed his knee into the little boy’s chest. Two hours later, when Hemphill stood up, Terrence was dead. “We were just praying for him and asking God to deliver him from the spirit that he had,” said Hemphill, who later explained that the service was in accordance with Matthew 12:43, which states, “When an evil spirit comes out of a man, it goes through arid places seeking rest and does not find it.”

MANY PARENTS OF CHILDREN WITH AUTISM ARE TIRED OF THE glacial pace of medical research, tired of slogging through hours of behavioral therapy, and tired of watching children improve at rates so slow it’s hard to tell if they are improving at all. They want something now, something that will immediately release them from the prison of autism. Douglas Biklen, a professor of special education at Syracuse University, was the first to provide it. Biklen was traveling in Melbourne, Australia, when he came upon a remarkable technique. “I [knew] that I had seen something incredible,” he said. “Here was a means of expression for people who lacked expression. It was clear that this was revolutionary.” He called it facilitated communication.

In 1990, Douglas Biklen brought facilitated communication to America. “Speaking involves muscles and control of muscles,” he said. “In fact, it’s a very complex motor activity. But [facilitated communication] is incredibly simple.” Using facilitators, who held children’s hands while guiding their fingers to letters on a keyboard, Biklen believed that autistic children could communicate. “It’s as easy as teaching a person to eat,” he said. On January 23, 1992, Diane Sawyer described Biklen’s technique on the ABC news program Primetime Live: “Biklen began training adults called ‘facilitators’ to provide the lightest possible counterweight on a child’s hand,” said Sawyer, “to see if the experts could be wrong; that inside these autistic bodies there was someone who had something to say. And what came back was a babble of distinctive, intelligent, desperately eager voices, as if the prison doors had been opened and the prisoners could speak.” The results were amazing. With the help of facilitators, children with autism typed out messages that filled their parents with hope:

“I am trapped in a cage and I want to get out.”

“I am intelligent and educated.”

“Autism held me hostage for seventeen years but not any more because now I can talk.”

“I cry a lot about my disability. It makes me feel bad when I can’t do work by myself.”

“Am I a slave or am I free? Am I trapped or can I be seen as an easy and rational spirit? Am I in Hell or am I in Heaven?”

“I greatly fear for the ruin of earth unless humans jointly find a cure.”

“I think you need to trust the person who facilitates. I feel I have done so well because my parents and teachers believe in me. I am also smart and facilitated communication has allowed me to show people.”

“I am a Democrat and I think Anita Hill was telling the truth.”

“I fear losing my ability to communicate. I fear once again being a clown in a world that is not a circus.”

For decades parents had longed to communicate with their autistic children. Now, with facilitated communication, their hopes were realized. “[Her first facilitator] was a college student,” said Jan Kochmeister, the mother of an autistic daughter, Sharisa. “I watched her twice and I couldn’t believe what I was seeing. Since then, Sharisa’s typed one hundred and twenty poems and nine short stories. She talks about everything that she feels.” “He types and spells very well,” said Jackie Smith of her son, Ronnie. “He knows things—words that I don’t even know. After a year of facilitation, I know there’s a bright, wonderful, smart, funny young man in there.” “This past year, in October ’92, a wonderful person came into [my daughter’s] life who had gone through Doug Biklen’s program here at Syracuse University,” said Kathy Hayduke, “and she said, ‘Do you know Stacy can write?’ And I just cried. I couldn’t believe it. I said, ‘No, no, you’re wrong. This is my kid. She’s learned maybe six signs her whole life. This can’t be true.’ So one day [the facilitator] came over to [my] house and she said, ‘Stacy, I know you’re excited. After all these years, you must have something you want to tell Mom.’ And Stacy typed out ‘I love you, Mom.’”

Encouraged by the technique’s success, Biklen started the Facilitated Communication Institute at Syracuse University. Parents and professionals flocked to see him. By 1993, hundreds of schools and centers for disabled children had adopted facilitated communication. Supported by public health departments in fifty states, Biklen’s institute trained thousands of parents, teachers, speech pathologists, and health care workers—missionaries in the crusade against autism. Diane Sawyer called Biklen’s technique “a miracle, an awakening.” The CBS Evening News called it “a breakthrough.”

Not everyone was impressed. Laura Schreibman found it difficult to believe that “even those individuals who tested in the severely retarded or severely autistic range could communicate with others, express deep emotions, write poetry, compose essays, engage in philosophical discussions, declare political affiliations, and advocate for better treatment and resources for people with disabilities.” She wondered how severely autistic children could be “much more literate, mathematically skilled, insightful, and politically aware than all the professionals had suspected.” Doris Allen, a psychologist at the Albert Einstein College of Medicine in New York, was also skeptical: “I think that some of the hype that facilitated communication has been receiving has been absolutely unprofessional, unvalidated, and irresponsible. [But] that happens with any new ‘cure.’ Many parents have come to me and requested that we [use facilitated communication]. I have not done it because [parents] already live on a roller coaster. I am in the position of having to put the brakes on the roller coaster, not to encourage a greater high and greater low for these people.”

Parents who had watched the miracle of facilitated communication dismissed the warnings of psychologists like Schreibman and Allen; they knew what they had seen. And they knew Douglas Biklen had offered them something conventional researchers hadn’t: hope.

It didn’t last long. In 1994, some parents became suspicious when children were typing letters without looking at the keyboard. They wondered how children could type long paragraphs without spelling or grammatical errors. Finally, they asked the question they had been so careful to avoid: Who was pointing to the letters, the facilitator or the child? “It was about two years ago when someone mentioned that Dr. Biklen was giving some seminars on this facilitated communication,” said Cathy Gherardi, the mother of an autistic son, Matthew. “The speech and language teacher at Matthew’s school was there and she just couldn’t wait to get back and start. [Matthew] was taking all kinds of Shakespeare literature, Romeo and Juliet, and he was in algebra class. The work that he was coming home with was absolutely incredible. Incredible.” But Matthew wouldn’t facilitate with his mother. “At that point I was trying to communicate with him at home,” said Gherardi. “I’m saying, ‘Gosh, if he’s talking to these people, why isn’t he talking to his mom?’ You know, he and I have been best fri...