This past April 2, on World Autism Awareness Day, Apple released a heartstrings-tugging commercial depicting an autistic boy typing, in part with the assistance of a facilitator, a message on an iPad that voiced: “So many people can't understand that I have a mind. All they see is a person who is not in control. But now you can hear me. The iPad helps me to see not only my words, but to hold onto my thoughts.”
The commercial was surprising because this system of “facilitated communication” (FC) was thoroughly discredited in the 1990s. Facilitators had used plastic alphabet keyboards or portable typing devices, and in various videos—for example, the 1993 Frontline episode “Prisoners of Silence”—you see children who are not even looking at the keyboard as facilitators direct their typing or facilitators moving the keyboard under a child's hand to produce the proper keystrokes. The technique was an academic curiosity until FC-generated messages included graphic descriptions of sexual abuse by families or caretakers of numerous children. Charges and lawsuits were filed, and courts needed scientists to determine who authored the accusations—the children or the facilitators?
Howard Shane, now director of the Autism Language Program at Boston Children's Hospital, and Doug Wheeler, then at the O. D. Heck Developmental Center in Schenectady, N.Y., conducted independent controlled experiments in which autistic children and their facilitators were shown pictures of either the same or different objects while blinded to what each other saw. What was typed was always and only what the facilitator saw.
Since then, as Emory University psychologist (and Scientific American Mind adviser) Scott O. Lilienfeld, an expert on pseudoscience in psychology and psychiatry, told Emory's eScienceCommons blog, dozens of controlled studies have unequivocally concluded that FC “doesn't work.” Worse, “the false hope buoyed by discredited therapies can be cruel, and it may prevent people from trying an intervention that actually could deliver benefits.” In a 2014 paper Lilienfeld co-wrote with Shane and others on “The Persistence of Fad Interventions in the Face of Negative Scientific Evidence” in Evidence-Based Communication Assessment and Intervention, a list of failed autism treatments included gluten-free diets, antifungal interventions, chelation therapy, nicotine patches, testosterone, marijuana, camel milk, weighted vests, magnetic shoe inserts and even bleach enemas.
Call it the Quack of the Gaps problem: gaps in scientific knowledge are filled with anyone's pet “theory” and corresponding “treatment.” When the evidence is lacking, proponents accuse skeptics of being closed-minded or of using hate speech. At Syracuse University, where FC is still promoted through the Institute on Communication and Inclusion, 28 signatories issued a statement supporting FC in response to a series of critical articles in the university's newspaper, the Daily Orange, proclaiming FC “a fundamental right” and that these studies “are based on the foundation that people who type to communicate have been ‘scientifically’ labeled as intellectually lesser and thus what they type cannot possibly be attributed to them.” So bias caused the negative results. “We must recognize that this argument has a history that spans groups of people in the U.S., a history of ‘scientific’ claims stating that … women are intellectually inferior, Blacks are intellectually inferior … these kinds of ‘scientific’ claims built upon intellectual inferiority are offensive and wrong.”
What is offensive and wrong is promoting a pseudoscientific technique such as FC as “scientific” and responding to skeptics by accusing them of bigotry. As for rights, what about the rights of the nonverbal Australian man whose facilitator, Martina Susanne Schweiger, admitted in court in 2014 to sexually molesting him in 2011, when he was 21, because, she said, through FC he said he loved her? Or the rights of the then 30-year-old African-American man with severe mental disabilities whose facilitator, the Syracuse-trained Anna Stubblefield, was sentenced to 12 years in prison in 2016 for sexually assaulting him in 2011, after she determined through FC that they were in love? Or the rights of the many loving parents and caretakers wrongfully accused of sexual abuse purely through FC?
Yoking the rights of autistic children to FC is self-serving sophistry. People with autism have the same rights as everyone else regardless of their communication skills. Rights are not vouchsafed only to those who can communicate, and of all people, those working at universities should know that. Shame on them.