The Scientific Review of Mental Health Practice

Objective Investigations of Controversial and Unorthodox Claims in Clinical Psychology, Psychiatry, and Social Work

MEDIA WATCH

Editor’s Note: This issue’s Media Watch article is an adapted version of a piece originally published in the Pasadena Weekly (May 19, 2005) by staff writer Julie Riggott. The article describes the controversy over the recent Academy Award-nominated film about a woman with autism who is reportedly helped by the treatment known as Facilitated Communication (FC). FC is a scientifically discredited technique that nonetheless continues to be widely promoted in the United States by Dr. Douglas Biklen, who is founder of the Facilitated Communication Institute at Syracuse University. Dr. Biklen recently was appointed the Dean of the university’s School of Education, and the Commission for Scientific Medicine and Mental Health (CSMMH) has issued a public statement expressing its concern over this decision. That letter is reproduced following this article. Additional information on pseudoscientific treatments for autism can be found in an earlier article published in this journal: Herbert, J. D., Sharp, I. R., & Gaudiano, B. A. (2002). Separating fact from fiction in the etiology and treatment of autism: A scientific review of the evidence. The Scientific Review of Mental Health Practice, 1(1), 23–43.
Brandon Gaudiano, Ph.D.
Media Watch Section Editor

PSEUDOSCIENCE IN AUTISM TREATMENT: ARE THE NEWS AND ENTERTAINMENT MEDIA HELPING OR HURTING?

Author:
Julie Riggott - Arts Editor, Pasadena Weekly

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 ostensibly 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 coproduced this film.

In seeming ignorance of the 1993 expose by PBS’ Frontline, (“The Prisoners of Silence”), CNN Presents broadcast the film multiple times in May of 2005. Newsweek featured the film and its star in a sidebar story to its February 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 the treatment options. With the exception of an ABC Nightline feature, the recent flurry of publicity about autism has not focused on scientifically supported 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).

‘A Candle in the Dark’

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 worlds 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.

One reason for the abundance of untested and ineffective therapies for 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.”

“The problem with the myriad of treatments for autism is that they prey on people’s hope,” said Dr. Sebastien Bosch, the clinical director and cofounder 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 1996 book, The Demon-Haunted World: Science as a Candle in the Dark. Pseudosciences, he explained, typically 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, in medicine and psychology, as examples, 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.”

Identifying Potential Dangers

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 (link). It found that none of these programs have rigorous scientific studies documenting their efficacy.

The Cambridge Center for Behavioral Studies (link) is another good resource for parents looking for research articles and links to reliable resources on applied behavior analysis (ABA). ABA is based on experimentally discovered principles with decades of validated and replicated scientific research to support it. Therefore, the National Institutes of Mental Health 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.

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.

Quackwatch.com is a Web site devoted to investigating health-related frauds and myths. Here, parents can find information about autism treatments that have no scientific validity. Quackwatch, which boasts a 152-member scientific and technical advisory board, reports that studies from the U.S. Centers for Disease Control and Prevention and the Institute of Medicine confirmed that there was no link between thimerosal and autism. The theory is that the low level of mercury in thimerosal, a preservative used in vaccines, causes autism. The National Institute of Mental Health reports the lack of support for this theory on its Web site, but the belief that there is a link between mercury and autism remains pervasive.

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 mumps, measles, and rubella, or MMR, vaccine, which is most often blamed for causing autism, never contained thimerosal in the first place. Still, many parents refuse to give their children vaccines, and others are trying chelation. Chelation therapy is a process that involves removing heavy metals from a person’s body through intravenous infusions, transdermal creams, or other methods.

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.

Another ‘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 him 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 and disturbing 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, the autistic people often 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.

When scientists stepped in, more than 50 controlled studies and blind tests, in addition to numerous controlled tests conducted in legal cases, unmasked FC as a delusion. 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 an arm or touch a 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 is explained in The Skeptic’s Dictionary (Carroll, 2003), in the late nineteenth 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 ineffective, Biklen continues to promote it. There still are no adequately controlled 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.”

References

Carroll, R.T. (2003). The skeptic’s dictionary: A collection of strange beliefs, amusing deceptions, and dangerous delusions. New York: Wiley.

Sagan, C. (1996). The demon-haunted world: Science as a candle in the dark. New York: Ballantine.


Commission for Scientific Medicine and Mental Health News Release

The Commission for Scientific Medicine and Mental Health (CSMMH) reacts with disappointment and dismay at Syracuse University’s appointment of Dr. Douglas Biklen as Dean of its School of Education.

Dr. Biklen has long been the world’s foremost proponent of facilitated communication (FC), a thoroughly discredited technique that purportedly allows mute and otherwise linguistically impaired children and adults with autism to communicate. FC has also been used among individuals with other severe developmental disabilities, brain injuries, mental retardation, and serious communication impairments. The rationale underpinning FC, which has been refuted by the scientific community, is that infantile autism is primarily a disorder of movement, not of cognition or social relatedness. These individuals, Dr. Biklen asserts, do not suffer from severe intellectual or interpersonal deficits. Instead, their movement deficits ostensibly render them incapable of speaking, leaving outsiders with the erroneous impression that they are cognitively impaired. Hence, with the aid of a facilitator who holds their hands, individuals using FC can supposedly type complete sentences on a computer keyboard or letter pad.

Yet numerous carefully controlled and peer-reviewed studies provide extensive and convincing evidence against FC. These investigations demonstrate that the seeming success of FC is due to facilitators’ unintentional control over the individual’s hand movements—the well known “ideomotor” or “Ouija-board” effect. Indeed, the American Psychological Association, American Psychiatric Association, American Academy of Child and Adolescent Psychiatry, American Association on Mental Retardation, American Speech-Language-Hearing Association, Association for Behavior Analysis, American Academy of Pediatrics, and New York State Department of Health have all issued policy statements advising against the use of FC for autism. Surprisingly, the Syracuse University press release announcing Dr. Biklen’s appointment, which discusses his central role in popularizing and disseminating FC, makes no mention of the large research literature debunking this treatment. The press release also neglects to mention the widely heralded 1993 PBS Frontline documentary, “The Prisoners of Silence,” which provided a devastating refutation of Dr. Biklen’s claims regarding FC and autism.

Despite the overwhelming scientific evidence against FC, Dr. Biklen has continued to promote it widely and uncritically in numerous venues. In addition, he has continued to dismiss the substantial body of negative findings regarding FC from controlled studies. Disturbingly, FC has been associated with numerous uncorroborated allegations of sexual and physical abuse against the family members of children with autism, some of which have resulted in the separation of parents from their children. Moreover, by first raising and then dashing the hopes of thousands of parents of children with autism, Dr. Biklen and other proponents of FC may have done grave harm to mental-health clients and to the reputation of clinical practitioners. Dr. Biklen’s efforts are particularly troubling given the availability of applied behavior analysis and related treatment approaches that have demonstrated promise in controlled studies for ameliorating the cognitive and emotional difficulties of individuals with autism.

CSMMH does not doubt Dr. Biklen’s good intentions, nor does it question his enthusiasm, administrative skills, or his personal commitment to the plight of individuals with autism and other serious developmental disabilities. In addition, CSMMH does not question the right of Syracuse University to appoint Dr. Biklen to the position of Dean, nor does it question Dr. Biklen’s academic freedom to continue to publish articles and books supportive of FC. Nevertheless, along with academic freedom comes the responsibility for scientific rigor and an acknowledgement, rather than dismissal, of findings that consistently contradict one’s claims.

By placing Dr. Biklen in charge of a major school of education at a prestigious institution of higher learning, Syracuse University is undermining the nationwide movement to place the fields of education and educational psychology on firmer scientific footing. Whether intended or not, Syracuse University is also sending a clear signal that it is not firmly committed to embracing evidence-based approaches to the understanding and treatment of human behavior. Their appointment of Dr. Biklen as Dean is a major step backward in the vitally important effort to promote science and combat pseudoscience in mental-health care.

Ronald Acierno, Ph.D.
Associate Professor, Department of Psychiatry
Medical University of South Carolina

Bill Ahearn, Ph.D.,
BCBA Director of Research
New England Center for Children , Southboro, MA

James Alcock, Ph.D.,
C.Psych. Professor, Department of Psychology
Glendon College, York University, Canada

George S. Baroff, Ph.D.
Professor Emeritus, Psychology
University of North Carolina at Chapel Hill

Douglas Bernstein, Ph.D.
Professor Department of Psychology
University of South Florida

Barry L. Beyerstein, Ph.D.
Professor, Department of Psychology
Simon Fraser University, Canada

Lynn Brandsma, Ph.D.
Assistant Professor, Department of Psychology
Chestnut Hill College, Philadelphia

John Winston Bush, Ph.D.
Chairman
New York Institute for Cognitive and Behavioral Therapies
New York, NY

Anthony Castrogiovanni, Ph.D.
Pyramid Educational Consultants
Olivebridge, NY 12461

James Coyne, Ph.D.
Professor, Department of Psychiatry
University of Pennsylvania

Susan Clancy, Ph.D.
Postdoctoral Fellow, Department of Psychology
Harvard University

Michael Eberlin, Ph.D.
Clinical and School Psychologist in Private Practice
Commack, NY

Howard D. Eisman, Ph.D
Executive Director
New York Institute for Cognitive and Behavioral Therapies
New York, NY

Howard N. Garb, Ph.D.
Chief, Psychology Research Service
Wilford Hall Medical Center Lackland Air Force Base
(The views expressed in this letter are those of Dr. Garb and are not the official policy of the Department of Defense or the United States Air Force.)

William I. Gardner, Ph.D.
Emeritus Professor, Rehabilitation Psychology Program
University of Wisconsin–Madison

Brandon Gaudiano, Ph.D.
Postdoctoral Fellow, Department of Psychiatry and Human Behavior
Brown Medical School

Laraine M. Glidden, Ph.D.
Chair, Department of Psychology
St. Mary’s College of Maryland

Gina Green, Ph.D.
Lecturer, Graduate School of Public Health and Department of Education
San Diego State University
Adjunct Professor, Department of Behavior Analysis
University of North Texas

James Herbert, Ph.D.
Associate Professor and Director of Clinical Training Department of Psychology
Drexel University, Philadelphia

Terence Hines, Ph.D.
Professor, Department of Psychology
Pace University, New York

Ray Hyman, Ph.D.
Professor Emeritus, Department of Psychology
University of Oregon

Donald Klein, M.D. Professor Department of Psychiatry New York State Psychiatric Institute Columbia University

Russell J. Kormann, Ph.D.
Project Director: Natural Setting Therapeutic Management
Rutgers, The State University of New Jersey

Scott O. Lilienfeld, Ph.D.
Editor, Scientific Review of Mental Health Practice
Associate Professor, Department of Psychology
Emory University, Atlanta

Steven Jay Lynn, Ph.D.
Professor, Department of Psychology
Binghamton University, Binghamton, NY

Donald H. McBurney, Ph.D.
Professor, Department of Psychology
University of Pittsburgh

Elizabeth A. Meadows, Ph.D.
Associate Professor, Department of Psychology
Central Michigan University

Jon C. Meccarello, Ph.D.
New York State Licensed Psychologist
Rochester, NY

Jean Mercer, Ph.D.
Professor, Richard Stockton College
New Jersey

Michael B. Miller, Ph.D.
Assistant Professor, Department of Epidemiology
University of Minnesota

Raymond G. Miltenberger, Ph.D.

Jordan A. Engberg
Professor, Department of Psychology
North Dakota State University

Robert Montgomery, Ph.D.
Adjunct Faculty, Department of Psychology
Director, Autism Spectrum Program
Georgia State University

Timothy E. Moore, Ph.D.,
C. Psych. Professor and Chair, Department of Psychology
Glendon College, York University Canada

James A. Mulick, Ph.D.
Professor, Pediatrics and Psychology
The Ohio State University

William T. O’Donohue, Ph.D.
Professor, Department of Psychology
University of Nevada, Reno

Anthony R. Pratkanis, Ph.D.
Professor, Department of Psychology
University of California, Santa Cruz

Raymond G. Romanczyk, Ph.D., BCBA
Professor and Director, Institute for Child Development
Department of Psychology
Binghamton University, Binghamton, NY

Gerald Rosen, Ph.D.
Clinical Professor, Department of Psychiatry
University of Washington Seattle, WA

Donald K. Routh, Ph.D.
Professor Emeritus, Department of Psychology
University of Miami

John Ruscio, Ph.D.
Associate Professor, Psychology Department
Elizabethtown College

Wallace Sampson, M.D., F.A.C.P
Editor, Scientific Review of Alternative Medicine
Professor of Medicine, Emeritus Stanford University

Sally Satel, M.D.
Psychiatrist and author
American Enterprise Institute Washington, D.C.

Henry D. Schlinger, Ph.D.
Lecturer, Departments of Psychology
California State University Los Angeles and Northridge

Howard C. Shane, Ph.D.
Associate Professor, Department of Otolaryngology
Harvard Medical School

Sara S. Sparrow, Ph.D.
Professor Emerita and Senior Research Scientist
Yale Child Study Center Yale University

Robert L. Spitzer, M.D.
Professor, Department of Psychiatry
New York State Psychiatric Institute
Columbia University

Carol Tavris, Ph.D.
Social psychologist, lecturer, writer
Los Angeles, CA

Bruce Thyer, Ph.D.
Professor, College of Social Work
Florida State University

Timothy R. Tumlin, Ph.D.
Psychologist, Independent Practice
Burr Ridge, IL

Stuart Vyse, Ph.D.
Professor, Department of Psychology
Connecticut College

James M. Wood, Ph.D.
Associate Professor, Department of Psychology
University of Texas, El Paso, TX

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