By Julie Riggott
Pasadena Weekly | May 29, 2005
In one of this year's Academy Award-nominated films, a severely autistic young woman appears to make a miraculous transformation. Tested with the mental age of a 2-year-old, Sue Rubin had little ability to communicate with the world. When Sue was 13, her mother discovered facilitated communication (FC), a technique in which a facilitator helps the autistic person to type. Everything changed. Immediately, and for the first time in her life, Sue could share her thoughts and feelings with her mother. Eventually, she was retested with an IQ of 133 and even enrolled in college - with a facilitator. A brilliant mind was supposedly freed from its prison of silence.
This story of hope against all odds sounds like a feel-good Hollywood drama. But the lead character in "Autism Is a World" is a real woman, and the film was nominated for best documentary short subject.
What the documentary doesn't mention, however, is that FC has a dramatic and highly controversial history that reached a climax more than a decade ago when it was exposed as a
pseudoscience.
Numerous controlled studies showed clearly that the autistic individuals were not actually communicating. Several professional organizations, including the American Psychological Association, the American Academy of Child and Adolescent Psychiatry, and the Association for Behavior Analysis, subsequently issued position statements indicating that FC is not a scientifically valid technique.
Yet Douglas Biklen, professor of Education and founder of the Facilitated Communication Institute at Syracuse University, continues to promote the technique vigorously. Not surprisingly, he also co-produced this film.
In seeming ignorance of the '90s expose by PBS’ “Frontline,” “CNN Presents” broadcast the film multiple times in May. Newsweek featured the film and its star in a sidebar story to its Feb. 28 feature, "Babies and Autism." The main article focused on the research being done to improve early diagnosis. But early diagnosis does parents little good if they don't find the most effective
treatment for their children.
Newsweek and its affiliates, MSNBC and "The Today Show," did little to help parents make sense of all the treatment options. With the exception of an ABC Nightline feature, the recent flurry of publicity about autism has not focused on scientifically validated treatments. Instead, pseudoscientific approaches with little or no evidence of their effectiveness continue to be presented as equally valuable treatment options. And parents continue to face a daunting array of approaches without guidance about where to turn. Meanwhile, scientists already know that the most effective intervention is early, intensive applied behavior analysis (ABA).
One day at a time
By definition, children with autism have problems with language and socialization. They either never develop speech or suddenly lose whatever words they have learned and exhibit little or no eye contact and interaction with people.
They also may rock, flap their hands or engage in other repetitive behaviors. The additional curse of the disorder is that many autistic children often appear physically no different than other children; they don't look like there is anything wrong with them. Though the severity of symptoms differs from child to child, the overall effect is one of isolation and lack of emotion. Parents often describe their children as retreating to their own world with no indication that they understand the one around them. In fact, the word "autism" has been around longer than the diagnosis. It refers to a state of absorption in mental activity and withdrawal from reality. Understandably, these social deficits create a highly emotional situation for the parents.
Anne Marie was diagnosed with autism at 22 months after she stopped responding to her parents, saying "mama" and "daddy," or even shaking her head yes or no. She sat with a blank expression at her own birthday party, didn't smile, and showed no interest in her presents. At other times, she could be mesmerized by a piece of dust, staring at it for minutes on end. Two years later, Anne-Marie's younger brother, Michel, was also diagnosed with autism, plunging the family into an even deeper abyss.
Anne Marie and Michel's mother, Catherine Maurice, said that a list of symptoms can't do justice to the emotional nightmare that is autism. "Those facts convey nothing of what can only be called the anguish of this time. They can't convey the searing panic as something begins to steal your child away from you. They don't even hint at the shock, the sleepless nights, the dry throat and pounding heart, the physical invasion of grief and fear," she commented at a presentation to the Cambridge Center for Behavioral Studies. Maurice also chronicled the series of "treatments out there that promise much and deliver little" that the family tried prior to finding ABA in her book, "Let Me Hear Your Voice."
It is an all too common story. Parents caught up in intense emotions are desperate to try anything to bring their children back.
"The problem with the myriad of treatments for autism is that they prey on people's hope," said Dr. Sebastien Bosch, clinical director and co-founder of California Unified Service Providers and an ABA practitioner. "And most consumers are not evaluating the 'product' in an informed manner because the promise of the 'quick fix' or the 'what if ...' is irresistible, and rightly so, for desperate parents."
The late Carl Sagan addressed the serious problem of pseudoscience in his 1997 book, "The Demon-Haunted World: Science as a Candle in the Dark." Pseudosciences, he explained, appeal to our emotions rather than our intellect. They are also easier to present to the public than science, because of their relaxed standards of evidence, so a culture lacking knowledge of scientific methods is easily swayed.
While some pseudosciences, such as astrology, ESP and "ufology," are more obvious, those cloaked more deceptively in the terms of science, for example, in medicine and psychology, are more difficult to detect. "Pseudosciences purport to use the methods and findings of science, while in fact they are faithless to its nature - often because they are based on insufficient evidence or because they ignore clues that point the other way," wrote Sagan.
"It is no coincidence that many promoters of 'quick fixes' avoid rigorous scientific scrutiny of their treatments, and use emotionally-laden language to promote those treatments," said Dr. Gina Green, lecturer in public health and special education at San Diego State University. "Put simply, pseudoscience has always sold better than science. So those who promise that autism can be cured or ameliorated substantially with a pill, a vitamin, a diet, some sensory stimulation, some exercises for the ears or eyes or brain, or some play time with their parents or typical children find a large and eager market for their services and products."
Green has worked in treatment and research involving people with autism and other developmental disabilities for about 30 years. "Autism," she has found, "is the perfect breeding ground for pseudoscience."
'Candle in the dark'
One reason for the abundance of untested and ineffective therapies in autism is that the disorder is shrouded in mystery. In 1943, Dr. Leo Kanner at the Johns Hopkins Hospital described the symptoms as a distinct disorder from childhood schizophrenia and named it "early infantile autism."
In 2004, researchers still don't know the causes and haven't found a cure. Prevalence estimates vary between 1 in 500 and 1 in 1,000 births per year. Whether diagnoses have skyrocketed due to better understanding of the symptoms or there is truly a new epidemic is thus far unclear.
Nonetheless, autism is a serious health problem. The National Institute of Mental Health's (NIMH) investment in autism research has quadrupled over the past seven years from $9.4 million to $36.2 million.
"Almost any situation where there is a lot of uncertainty tends to invite a lot of speculation," said Green. "Thus there have always been many theories about what causes autism and what might be helpful for treating it."
Therapies claiming to treat autism range from biomedical and nutritional to psychological and emotional. Most have not been subjected to scientific testing. Of those that have, "the overwhelming majority proved to have no beneficial effects, while others were shown to have harmful physical and emotional side effects," said Green. "Just a few examples are patterning and other therapies, sensory and auditory integration therapies, various psychoactive drugs, secretin and FC."
Yet most of these treatments or variations of them are still being promoted by many mainstream organizations and the media. Millions of dollars are spent every year on treatments for autism, many of them ineffective. FC keyboards can cost as much as $4,300, according to People magazine, which also gave a largely glowing and uncritical account of the supposed wonders of FC. Then there's the cost of hiring a facilitator.
There are numerous other treatments without scientific merit, including colored-lens therapies, music therapy, dolphin therapy, the rapid prompting method and occupational therapy, including the "squeeze machine."
Dr. Patricia Krantz is executive director of the Princeton Child Development Institute, which was featured in "The Today Show's" recent series on autism.
She said, "It is not possible to say that different approaches work for some and not for others because applied behavior analysis is the only approach that has a body of data about effectiveness." In reference to other programs that "The Today Show" highlighted, Krantz said, "TEACCH [or
Treatment and Education of Autistic and Communication Handicapped Children] and Floor Time have little or no data about effectiveness." The bottom line, said Krantz, is that "marketing contingencies compete with science."
There are many reasons why pseudoscience gets more publicity than science. Robert Park, professor of physics at the University of Maryland and author of 2000's "Voodoo Science: The Road from Foolishness to Fraud," explained in his book: "New results and ideas are argued in the halls of research institutions, presented at scientific meetings, published in scholarly journals, all out of the public view. Voodoo Science, by contrast, is usually pitched directly to the media, circumventing the normal process of scientific review and debate. ... The result is that a disproportionate share of the science seen by the public is flawed."
Instead of relying on scientifically proven procedures, pseudoscientific treatments often depend on anecdotal evidence in the form of success stories or testimonials from users and purveyors. They often ignore scientific facts and research that contradicts their claims. Parents should especially be skeptical when the only group to admit the effectiveness of a given treatment is the one that stands to make money from it.
Beware, said J. Grayson Osborne, professor of psychology at Utah State University, of "faux fixes" that have no research and no data to prove that they work. And avoid programs with poorly defined or measured goals and no program evaluation. Autism is a pervasive and chronic disorder, and no magic can claim to solve the problem quickly. "Be skeptical," Osborne warned, "when someone is about to wave a wand."
The antidote to pseudoscience is, as Sagan suggested, skepticism and an understanding of the methods of science. With this "candle in the dark," parents can better recognize pseudoscience.
Potential danger
There are organizations that parents can rely on for scientific and accurate information. The Association for Science in Autism Treatment (ASAT) thoroughly discusses various treatments including auditory integration training, FC, the Miller Method, Sensory Integration, the Son-Rise Program and TEACCH, a statewide program in North Carolina, on their Web site (www.asatonline.org). It found that none of these programs have peer-reviewed, scientific studies or evaluations of their effectiveness.
The Cambridge Center for Behavioral Studies (http://www.behavior.org) is another good resource for parents looking for research articles and links to reliable resources. The NIMH Web site says that the efficacy and safety of dietary interventions, vitamin supplements, and secretin "have not been proven in clinical trials." It also recommends various questions that parents can ask when evaluating treatment options. Some of those are: "How is progress measured?" and "Will my child's behavior be closely observed and measured?"
Furthermore, the NIMH Web site states that, "to be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials that would allow for a comparison between treatment and no treatment."
Applied behavior analysis is based on experimentally discovered principles with decades of validated and replicated scientific research to support it. Therefore, the NIMH lists ABA as the only documented effective treatment for autism. It also cites "Mental Health: A Report of the Surgeon General," which confirms that "thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior."
The ABA experts in this story convened in Dana Point in February at the annual meeting of the California Association for Behavior Analysis, a regional branch of the international Association for Behavior Analysis. A point reiterated during the conference was the importance of ensuring the availability of qualified ABA practitioners. According to many of these psychologists, demand for ABA treatment is currently much higher than the supply of qualified practitioners - a problem hopefully being remedied by the Behavior Analyst Certification Board.
The Maurice family's story has a happy ending - not because of a miracle cure, but because of intensive ABA.
Anne Marie and Michel went from withdrawn and silent to "empathetic and engaging." They performed well in school, developed good social skills and live normal lives with no obvious signs of autism.
Not all stories end as well. One of the obvious dangers of
pseudoscience in autism is that time is wasted when intervention is most crucial and there is the best chance for recovery.
"We have a sense of emergency because the children are most malleable between the ages of 2 and 4," said Bosch of California Unified Service Providers.
Another problem is that time and money spent on false promises are diverted from legitimate research and progress. Of course, there is also the potential for emotional and physical harm.
"Probably the most dramatic illustration of the dangers of
pseudoscience in autism ... is the worldwide public health crisis that has been created by the pseudoscience behind the vaccine scare," said Green.
The theory that the low levels of mercury in thimerosal, a preservative used in vaccines, caused autism has not been proven, and the authors of the original study retracted their claims. The NIMH reports this information on its Web site, but the belief that there is a link between mercury and autism is pervasive. So much so that the latest pseudoscientific trend in autism treatment is based on this misconception. Chelation therapy is a process that involves removing metals from the person's body through intravenous infusions, transdermal creams or other methods.
Quackwatch.com is a Web site devoted to investigating healthrelated frauds and myths. Here parents can find information about chelation, among other autism
treatments that have no scientific validity. Quackwatch, which boasts a 152-member scientific and technical advisory board, reports that studies from the US Centers for Disease Control and Prevention and the Institute of Medicine confirmed that there was no link between thimerosal and autism.
Another study published in the British medical journal The Lancet concluded that "administration of vaccines containing thimerosal does not seem to raise blood concentrations of mercury above safe values in infants."
Furthermore, thimerosal has been removed from many vaccines, and "none of the vaccines now used to protect preschool children against 12 infectious diseases contain thimerosal as a preservative," according to Quackwatch.
Surprisingly, the MMR vaccine, which is most often blamed for causing autism, never contained thimerosal in the first place. Still, many parents are refusing to give their children vaccines, and others are trying chelation.
Given that it is based on a disproven theory should be reason enough to avoid it, but chelation is also expensive and dangerous. It has caused physical harm and death in some cases. Because it is called a biomedical therapy and is promoted and practiced by a few physicians, parents may be less skeptical than they should be.
Clever Hans
The FC debacle reveals just how dangerous pseudoscience can become.
In the early 1990s, FC was hailed by practitioners and the media as a miracle that allowed disabled people to share their thoughts and feelings for the first time. In many instances, the facilitator holds the autistic person's hand and helps them to type out a message on a keyboard with one finger. People diagnosed as mentally retarded or autistic took their facilitators to school and suddenly became model students and began writing poetry and short stories.
Parents and teachers were swept up in the frenzy of the sudden and newfound verbal skills of their autistic children and students. Then the phenomenon took a strange turn. An inordinate number of children and their facilitators started accusing their parents or others of sexual abuse. Parents and caretakers were arrested, children were placed in foster care, and many lives were ruined.
Not until it reached this level of controversy did people begin to question some obvious inconsistencies. For instance, often the autistic people did not even look at the keyboard, while the facilitators never took their eyes off of it. And it is well known that typing with one finger without looking at the keyboard is impossible.
Also, autism does not typically cause physical disability or fine motor difficulties, so why would autistic individuals need physical assistance? And how did people who did not know how to read or write suddenly type sophisticated, grammatically correct sentences?
When scientists stepped in, more than 50 controlled studies and blind tests, in addition to numerous controlled tests conducted in legal cases, revealed FC as a hoax. These studies showed, without a doubt, that the FC messages were controlled by the facilitators, not the disabled people.
In some double-blind tests, for example, the facilitator was shown one picture and the disabled person another. Without fail, the disabled person then typed what the facilitator saw. But to the untrained observer, the technique, like other pseudoscientific therapies, appeared to work.
Sometimes, the influence of the facilitator is less obvious, because the facilitator might not hold the person's hand, but support their arm or touch their shoulder -- or even simply observe the typing.
"Naked-eye, informal observations and facilitators' reports absolutely cannot be relied upon to reveal control [by the facilitators] because the cues provided by facilitators are often very subtle, and facilitators typically deny it even in the face of evidence," explained Green of San Diego State, who consulted with families involved in lawsuits during the FC debacle.
The obvious or subtle influences of facilitators were shown to be the equivalent of the Ouija board effect or the Clever Hans phenomenon. While the Ouija board obviously uses hands-on control to move a device across a board, the story of Clever Hans shows that touch is not even necessary.
As explained in the "Skeptic's Dictionary," in the late 19th century, a man believed that his horse, Clever Hans, could solve mathematical equations by tapping his hoof the correct number of times. It was eventually discovered that Hans was responding to unconscious subtle movements from his owner that caused him to start and then stop tapping his hoof at the right time. When Hans couldn't see his owner or his owner didn't know the correct answer, Hans could not answer correctly either. Psychologists have long known about the phenomenon of such "unconscious cuing" in humans, and FC proved to be another example.
Even in the face of overwhelming evidence showing FC to be a hoax, Biklen continues to promote it. There still are no scientific data supporting the validity of FC, even from Biklen's Facilitated Communication Institute at Syracuse University.
Considering FC's controversial history, the publicity surrounding the Academy Award-nominated documentary is less than encouraging evidence about the longevity and appeal of pseudoscience.
Said Green, "This film and the hype surrounding it are hitting a new generation of parents of children with autism who are largely unaware of the history of FC and again are likely to be vulnerable to the seductive claims being made about it."
http://www.altweeklies.com/aan/pseudoscience-in-autism-treatment/Story?oid=147039
