Why do debunked autism treatment fads persist?
The communication struggles of children with autism spectrum disorder can drive parents and educators to try anything to understand their thoughts, needs and wants. Unfortunately, specialists in psychology and communication disorders do not always communicate the latest science so well.
These factors make the autism community especially vulnerable to interventions and "therapies" that have been thoroughly discredited, says Scott Lilienfeld, a psychologist at Emory University.
"Hope is a great thing, I'm a strong believer in it," Lilienfeld says. "But the false hope buoyed by discredited therapies can be cruel, and it may prevent people from trying an intervention that actually could deliver benefits."
Lilienfeld is lead author of a commentary, "The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example," published by the journal Evidence-Based Communication Assessment and Intervention. Co-authors of the commentary are Julia Marshall (also from Emory) and psychologists James Todd (from Eastern Michigan University), and Howard Shane (director of the Autism Language Program at Boston Children's Hospital).
The authors describe a litany of treatments for autism that have been attempted with little or no success over the years, including gluten- and casein-free diets, antifungal interventions, chelation therapy, magnetic shoe inserts, hyperbaric oxygen sessions, weighted vests, bleach enemas, sheep-stem-cell injections and many more.
As a case study, however, the article focuses on one intervention in particular: Facilitated Communication, or FC.
FC purports to allow previously nonverbal individuals with autism and related disorders to type by using a keyboard or letter pad. A facilitator offers support to the individual's arms, allowing him or her to type words and complete sentences.
Soon after its introduction into the United States in the early 1990s, however, FC was convincingly debunked. Studies overwhelmingly demonstrated that facilitators were unconsciously guiding the hands of individuals with autism toward the desired letters, much as individuals using a Ouija board unknowingly guide the planchette to certain numbers and letters.
"The emotional appeal of FC is very powerful and understandable," Lilienfeld says. "And no doubt the overwhelming majority of people who use FC are sincere and well-meaning. The problem is, it doesn't work."
In some cases, the authors note, FC has resurfaced with minor variations in the technique and a new name, such as "rapid prompting," or "supported typing."
By reviewing published surveys of practitioner use and canvassing the popular and academic literatures, Lilienfeld and his co-authors show that FC continues to be widely used and widely disseminated in much of the autism community despite its scientific refutation. They examine a number of potential reasons for the surprising persistence of FC and other autism fads. They note that the inherent difficulties in treating autism may give rise to an understandable desire for quick fixes of many kinds.
Lilienfeld and his colleagues underscore the pressing need for experts in the autism field to better educate the public about not only what works for the condition, but what does not.
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Scott O. Lilienfeld, Julia Marshall, James T. Todd, Howard C. Shane. The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example. Evidence-Based Communication Assessment and Intervention, Published Online February 2 2015. doi: 10.1080/17489539.2014.976332