With the explosive growth in autism, parents of children diagnosed with the disorder have looked for answers and ways to help their children communicate. In the process, researchers say many have embraced therapies that have been thoroughly discredited.
Despite scientific evidence to the contrary, practitioners of these therapies continue to flourish. Scott Lilienfeld, a psychologist at Emory University, says the autism community remains vulnerable to interventions and therapies that have been studied for decades and debunked.
"Hope is a great thing, I'm a strong believer in it," Lilienfeld said. "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 on what he calls "fad interventions," published by the journal Evidence-Based Communication Assessment and Intervention. The authors include on their list of failed autism treatments things like gluten- and casein-free diets, antifungal interventions, chelation therapy, magnetic shoe inserts, hyperbaric oxygen sessions, weighted vests, bleach enemas and sheep stem-cell injections to name a few.
However, Lilienfeld and co-authors 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, give special attention to Facilitated Communication, or FC.
With FC, someone with autism types out communication on a keyboard or letter pad. Actually, they do it with some help. A facilitator provides support to the individual's arms, allowing him or her to type words and complete sentences.
Controversial and unproved
In 1994 the American Psychological Association (APA) passed a resolution labeling FC as “a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy.” Even so, 21 years later it is still being practiced.
The authors say these facilitators supporting the arm or hand of the typist are in fact, tapping out their own conscious or unconscious thoughts. On occasion, those messages have made accusations of abuse against parents or caregivers.
Lilienfeld and his co-authors maintain FC is much like someone using a ouija board, which is supposed to reveal messages from someone who has died. They cite research they say has showed that the ouija board users themselves are unconsciously moving their hands.
"The emotional appeal of FC is very powerful and understandable," Lilienfeld said. "And no doubt the overwhelming majority of people who use FC are sincere and well-meaning. The problem is, it doesn't work."
But Lilienfeld and his co-authors cite examples of FC still being widely used in much of the autism community, in effect ignoring its scientific refutation. These fads, they suggest, persist because autism is extremely difficult to treat. There is also no known cure.
The National Institutes of Health (NIH) says the ideal treatment plan coordinates therapies and interventions that meet the specific needs of individual children. Most health care professionals agree that the earlier the intervention, the better.
NIH suggests the most successful treatments focus on specific symptoms. Therapists have used intensive training sessions aimed at improving skills to help children develop social and language skills, such as Applied Behavioral Analysis.
Family counseling for the parents and siblings of children with an autism often helps families cope with the challenges of living with a child with autism.
Lilienfeld and his colleagues say that, in addition to providing this help, experts in autism need to better educate the public about not only what works for the condition, but what doesn't.