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.”
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 friends, bosom buddies. I mean I’m his life and he’s mine. Surely we can be able to communicate. But I got absolutely nothing. As a matter of fact, he would take his [letter] board and put it in his closet and say, ‘Finished.’ ”
Then facilitated communication tipped its hand. One of Matthew Gherardi’s facilitators, Susan Rand, showed Cathy a message from Matthew claiming that he had been sexually abused by his father, Gerry. Rand reported Matthew’s statements to the police. Gerry Gherardi, a pharmacist at a veteran’s hospital, knew nothing of the allegations against him. “I got home around 9:30,” he said. “I pulled into my driveway and Cathy came rushing down and started to talk to me. She immediately told me not to go into the house, that there was a warrant out for my arrest, that allegations had been made that I had sexually abused Matthew.” Gherardi pleaded his innocence. But the school, social services, and police all believed that the accusations had come from Matthew. Gerry Gherardi spent the next six months living at a friend’s house, recalling, “I told Cathy, ‘There’s got to be something wrong. It has to be happening someplace else. We have to call the Autism Society in Washington and find out if they have any literature on facilitated communication and allegations of sexual abuse.’ When she called them up, they immediately sent us materials [that] showed that it was happening all over the country.”
Through facilitated communication, autistic children in California, Texas, Georgia, Indiana, Oklahoma, and New York had claimed they had been sexually abused. Some parents, like Gerry Gherardi, had been forced to leave their homes, while others had been arrested and jailed. Children had been taken away. Then one child, a seventeen-year-old autistic girl named Betsy Wheaton, set in motion a series of events that put an end to facilitated communication.
According to her facilitator, Betsy had accused her father, mother, grandparents, and brother of sexually abusing her. Before the district attorney could prosecute the entire Wheaton family, he first had to determine who was doing the communicating. So he asked Howard Shane, an expert in communication from Boston Children’s Hospital, to devise a simple apparatus, and Douglas Wheeler, a psychologist at the O. D. Heck Center in upstate New York, to test it. “We just had a table which was split down the middle,” said Wheeler, a believer in facilitated communication. “The facilitator could see down one side and the student could see down [his or her] side. They couldn’t see each other’s sides.”
One of the first children tested was Betsy Wheaton. When Betsy and her facilitator were both shown a picture of a key, Betsy typed the word key. But when Betsy was shown a picture of a cup and her facilitator was shown a picture of a hat, Betsy typed the word hat. Clearly, the facilitator was subconsciously doing the typing. Wheeler tested more children, but the results were the same. “The outcome was quite dramatic,” said Wheeler. “We had zero correct responses for the students.” Ray Paglieri, the director of the autism program at the O. D. Heck Center, said, “We literally didn’t get one correct response. I mean, it was unbelievable given our prior belief systems about the whole thing.” During the next few years, twelve studies performed in three countries showed identical results. “It was devastating to watch,” said Phil Worden, Betsy’s legal guardian. “Because what you saw was that the words being typed out were the words the facilitator had seen. It was just so clear and unmistakable. I was sitting there watching this and saying, ‘My God, it’s really true. This stuff is bogus.’”
Doug Wheeler knew that the bubble had burst. He also knew how hard it was going to be for the thousands of facilitators across the country to accept his findings. “There were 180 trials where valid communication could have been demonstrated and none did,” said Wheeler. “We had overwhelming evidence for facilitator control. It began to dawn on us that the impact on the facilitators was going to be traumatic. [Facilitated communication] had become an essential part of their belief system, an essential part of their personality. People would use phrases like, ‘Facilitated communication is my whole life.’ These people were dedicated. They spent their own money doing training. We knew that [facilitator control] was unconscious. We knew these people had no idea they were controlling it.”
Marian Pitsas, a speech pathologist and facilitator at the O. D. Heck Center, had participated in the first study showing facilitated communication was a massive, nationwide delusion. “It was devastating to see the data just there in black and white,” said Pitsas. “It was mind-boggling. There was no arguing it. To see the look on Doug [Wheeler’s] face, someone who I worked with, whose opinion I trust. It was devastating. I wished the floor would open up.” Pitsas went back to the children to whom she had given a voice, realizing now that the communication she thought had been between her and her patient had been between her and herself. “What bothered me even more than that was thinking of the parents,” said Pitsas. “We had given them false hope and we had to tell them that it wasn’t real. I went back to every individual in our program that I had used facilitated communication with and tried facilitating with them with the same equipment they had used before, whether it was a keyboard, a letter board or what, without me looking at the keyboard. All I got were a string of letters. And I didn’t try it just once; I went back over several days.”
Douglas Biklen, the founder of facilitated communication, refused to believe the results of the studies. “People say that it must be the teachers [unintentionally] guiding,” said Biklen. “It’s really not possible. Students tell us information that we don’t have. They tell us what went on over the weekend [and] who their siblings are. So we have all of these instances where children are telling us things that we just had no way of knowing.” Facilitated communication was a matter of trust, he said. Once that trust was broken by the rigor of a study, it didn’t work. “I think that the test has severe problems,” said Biklen. “You’re putting people in what might be described as a confrontational situation. That is, they’re being asked to prove themselves. Confidence appears to be a critical element in the method. If people are anxious, they may, in fact, freeze up in their ability to respond. They may lose confidence. They may feel inadequate.” Biklen claimed his method worked only when it wasn’t being tested. Morley Safer, interviewing Biklen on the CBS news program 60 Minutes, countered the claim that facilitated communication was untestable: “That’s like saying, ‘All pigs can fly, but they can only fly when we’re not looking.’”
Howard Shane, the communication specialist who had designed the study, was sickened by the false promise of facilitated communication—that in the name of giving autistic children a voice, it had robbed them of one. “I think that it was hurtful and harmful,” said Shane. “It deprived children of their right to independently communicate.” Gerry Gherardi was sobered by his experience: “I think a lot of parents are grabbing at straws and are hoping that facilitated communication is going to be the answer for them, and I think they’ve been blinded by it. And I feel for these people because I can certainly understand where they’re coming from.” Douglas Wheeler was also circumspect: “If I had just thought about the literature on autism and thought about the studies I was familiar with, I would have known that the phenomenon of facilitated communication was illogical, that it probably couldn’t exist. But I was so caught up in the emotionality of it.”
Although it was revealed as a hoax, some parents still believe in the miracle of facilitated communication. “Something’s happening here that’s wonderful for all of us,” said one mother. “And if it’s a dream or a delusion, I’ll stay on this narcotic.”
THE NEXT TO OFFER A LIFELINE TO PARENTS OF AUTISTIC CHILDREN was Victoria Beck, the mother of an autistic son. She was the first parent to urge doctors to stop treating the brains of autistic children with behavioral therapies and to start treating their intestines with medical therapies.
Parker Beck was born in January 1993. He seemed normal until a few months after his second birthday. “Then he completely zoned out and removed [himself] from the rest of the world,” said Victoria. “He wouldn’t respond to his name anymore and he had no interest in playing.” Parker had facial tics, banged his head against the wall, and had only two words in his vocabulary: “chuss,” for juice, and “k-k-k,” for cracker. Worse: he suffered from chronic diarrhea and abdominal pain. In April 1996, when Parker Beck was three years old, Victoria took him to the University of Maryland medical center in Baltimore, hoping to find the cause of his intestinal problems. There, she was referred to Karoly Horvath, a pediatrician and gastroenterologist. Horvath sedated Parker, put a fiber-optic tube down his throat and into his intestines, and injected him intravenously with a hormone derived from pigs called secretin. Made by cells that line the small intestine, secretin causes the pancreas to secrete digestive juices. Horvath wanted to make sure that Parker’s pancreas was working. He didn’t anticipate what would happen next.
Ten days after the procedure, Parker’s therapist shouted for Victoria to come downstairs quickly. “Victoria, you’ve got to see this,” she said. Parker was pointing to pictures of his mother and father saying, “Mommy” and “Daddy.” “I was stunned,” recalled Victoria. “That night we picked him up and took him around the house and said ‘Parker, say table.’ He said ‘table.’ We said, ‘Say candle.’ He said ‘candle.’ ‘Say chair,’ and he said ‘chair.’ It took him a while to get the words off his tongue, but it was phenomenal.” Victoria Beck believed that secretin had inadvertently treated her son’s autism. Three months later, the progress stopped. “I panicked,” recalled Victoria. “I was convinced this drug was helping and I couldn’t get my hands on it.”
Beck called the Autism Research Institute in San Diego and spoke to its founder, Bernard Rimland. Rimland had been instrumental in disproving Bruno Bettelheim’s theory of the “refrigerator mother.” Now, weary of the slow pace of research, he was interested in helping parents find their own cures for autism. He asked other parents if they could help Victoria Beck. One, Kenneth Sokolski, an assistant professor at the University of California at Irvine, thought he could. After watching videotapes of Parker before and after secretin therapy, Sokolski was intrigued. He persuaded a gastroenterologist in California to give secretin to his son, Aaron. “You couldn’t get [Aaron] to look at you at all,” said Sokolski. But after just one dose, “He looked right in the therapist’s eyes.”
Now two children had apparently benefited from secretin therapy. Victoria Beck called Karoly Horvath and told him about Aaron Sokolski. Horvath later published the stories of Sokolski, Beck, and one other child in a medical journal. To alert other parents that secretin might be a cure for autism, Rimland organized a conference through his Autism Research Institute. There, Victoria Beck spoke to more than 1,000 parents. “There wasn’t a dry eye in the place,” recalled Rimland.
Word of the secretin miracle spread. On October 7, 1998, Jane Pauley from Dateline NBC told the story of Parker Beck. “It’s one of medicine’s most profound mysteries,” she began. “But tonight a development some hail as a breakthrough may literally break the silence of autism. It’s called secretin therapy and it’s making a remarkable difference for some autistic children. Equally remarkable is where it came from: not medical researchers, not the federal government, but one mother and father who did what most any parent would do—they refused to give up.” The demand for secretin soared. Within months, more than 2,000 parents had tried secretin on their children. Bernard Rimland called secretin “the most important development in the history of autism.” But only one company, Sweden’s Ferring Group, made it; and it couldn’t make it fast enough. Pharmacies waited months for orders to be filled, and many parents, increasingly desperate to acquire the drug, became victims of price gouging and fraud. One Dallas doctor paid $800 for four secretin infusions and charged $8,000 to administer them. And many parents bought an oral form of secretin through the Internet later found to contain only glycerin and water.
To solve the problem of secretin supply, Walter Herlihy, a biochemist from Needham, Massachusetts, stepped forward. The father of a seven-year-old autistic girl, Herlihy too had experienced the miracle of secretin and was anxious to help other parents. He was in a unique position to do so. Herlihy was the president and chief executive officer of Repligen, a small biotechnology company that made human secretin synthetically—a purer, more natural form of the drug than the one derived from pig intestines. Herlihy hoped the Food and Drug Administration (FDA) would allow him to market human secretin for the treatment of autism. But first he had to prove that it worked.
In 1999, autism researcher Adrian Sandler and his colleagues from the University of North Carolina tested Walter Herlihy’s human secretin. The group enrolled fifty-six children in the study; half were injected with a single dose of human secretin and half were injected with salt water. For the next four weeks children were evaluated by parents, teachers, and clinicians. No one evaluating the children knew whether they had received secretin or salt water. The results were surprising. Children who had received secretin had a significant improvement in their behavioral and communication skills. But children who had received salt water also had a dramatic improvement—even greater than that for the secretin group. Sandler’s study showed that secretin was no better than salt water at treating autism, but it also showed just how much parents wanted to see their children get better after an intravenous injection of a medicine they thought might help. On December 9, 1999, Adrian Sandler published the results of his study in the New England Journal of Medicine. When parents who had participated in the study were told that secretin didn’t work, 69 percent said that they still wanted to give it to their children.
Between 1999 and 2002, investigators from three continents performed fifteen more studies of secretin. They injected autistic children with multiple doses of secretin, watched them for longer periods of time after receiving the drug, and included those with or without bowel problems. The results were the same. Not one study showed that secretin was effective in treating autism. But some parents refused to accept the outcome of these studies, preferring to believe the dramatic stories of Parker Beck and Aaron Sokolski instead. Michael Fitzpatrick, a British physician whose son has autism, has written many articles and a book on the subject. “Parents are liable to [believe in alternative] treatments for autism for a number of reasons,” said Fitzpatrick. “First, the behavior of autistic children may fluctuate for no apparent reason. Second, there is a tendency for behavior to improve over time, particularly in the age range of six to ten after a more difficult period between two and five. Third, it is difficult to isolate the effect of any particular treatment from other factors that may influence 'margin-bottom:6.0pt;text-align:justify;text-indent: 12.0pt;line-height:normal'>When the dust settled, Fred Volkmar, an autism researcher at Yale University School of Medicine, added a postscript to the secretin story. Echoing the words of other researchers, Volkmar wrote: “The extensive media attention [on secretin] when substantive supporting data were absent was clearly premature and unfortunate. What makes an interesting television program may not, of course, be the same as what makes good science.”
Debunked, secretin is now rarely used by parents seeking a cure for autism.
ALTHOUGH THE FALSE PROMISES OF FACILITATED COMMUNICATION and secretin squandered research funding and drained parents’ resources, these therapies weren’t harmful. Unfortunately, events soon to unfold in England would dramatically raise the stakes. Parents of autistic children were about to lose much more than time and money.