Facilitated Communication: Prisoners of Silence

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Contents
PBS Frontline Prisoners of Silence, Airdate 10/19/1993

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  • Prisoners of Silence is a 1993 PBS Frontline documentary about the rise and fall of facilitated communication (FC), an alleged method for communicating with autistic children.
  • The documentary wonderfully illustrates the conflict between two drivers of belief:
    • Skepticism: the disposition to believe based only rational argument
    • Wishful Thinking: the disposition to believe what you want to be true
  • At issue is whether facilitated communication works.
  • Prisoners of Silence typifies scientific skepticism in action.  Howard Shane, the skeptical star of the piece, conducts a crucial, persuasive experiment of facilitated communication.
Facilitated Communication

Facilitated communication is a technique for (allegedly) enabling an autistic or non-verbal person to communicate by typing on a keyboard, aided by a facilitator.

Cast of Characters
  • Douglas Biklen
    • Founder and Director of the Facilitated Communication Institute at Syracuse University
    • After learning about FC in Australia, he introduced FC into the US.
  • Cathy and Gerry Gherardi and their son Matthew 
    • A couple whose autistic son accused his father Gerry (through facilitated communication) of sexually molesting him.  Gerry was forced to leave his home.
  • Betsy Wheaton
    • A 17-year-old autistic girl who, through her facilitated communicator, accused her family members of sexually abusing her. 
  • Phil Worden
    • A lawyer appointed by the court as Betsy Wheaton’s legal guardian. He realized the key question was whether the accusations were coming from Betsy or her facilitator.
  • Howard Shane, Ph.d.
    • Director of the Autism Language Program and Communication Enhancement Program at Boston’s Children’s Hospital. 
    • The skeptical hero of the documentary.
  • At the O.D Heck Center for the Developmentally Disabled in Schenectady, NY
    • Ray Paglieri
      • Director, Autism Program at O.D. Heck Center
    • Doug Wheeler
      • Psychologist, O.D. Heck Center
    • Marian Pitsas
      • Speech Pathologist, Facilitator, O.D. Heck Center 
    • Jimmy Maruska
      • Facilitator, O.D. Heck Center
Initial Doubts about FC
  • Howard Shane thought the output of FC was too sophisticated for the children’s ages.
  • Cathy Gherardi was unable to communicate with her son Matt using FC, though the facilitator could. She was also skeptical of the highly sophisticated schoolwork Matt was doing through the facilitator.
  • It was implausible that thousands of autistic children had taught themselves to read and write by merely watching television.
  • It was curious that disabled individuals who could point by themselves needed someone to hold their hands to type.
  • Most autistic children typed without looking at their keyboards
Howard Shane’s Test of FC

The question was whether the source of the typed messages was the child or the facilitator.  Shane showed both a series of pictures and asked them to type what they saw. When both were shown a picture of the same object the typed message was correct. But when they were shown pictures of different objects, the typed message described what the facilitator saw, not what the child saw.

Marian Pitsas, Comment

“I know, for myself, I wanted so hard to believe that it was real, that I wasn’t able to listen to objective thinking about it, because it grabs you emotionally right here and once you’re hooked, I mean, you are hooked. It– you just– I don’t think I was capable of rationally thinking about it because I had clues even before we did our study, that there was facilitator influence taking place in other places. People had done studies in Australia and I said, ‘Oh, we– that doesn’t happen here. We aren’t using the same– we aren’t using it the same way. We aren’t holding letter boards in the air. We have them down on the table, so therefore that limits the influence that could be taking place.’ Well, I was dead wrong.”

Doug Wheeler, Comment on the Facilitators

“Their belief had grown to such an extent and was continuing to grow at that point where it really had become an essential part of their belief system, an essential part of their personality, and people would use phrases like, ‘F/C is my whole life.’ ‘F/C is my life.’ ”

Narrator, Closing Comment

“One day, the mysterious condition of autism will be understood and researchers may find a cure. Until then, as the evidence against facilitated communication accumulates, a painful question remains, whether parents and those who care deeply about autistic individuals are choosing to see them as they would like them to be, rather than respecting them for who they are.”

Biklen’s Ad Hoc Hypothesis
  • An Ad Hoc Hypothesis protects a deeply-held belief by explaining away disconfirming evidence, i.e. by explaining how the evidence is consistent with the belief.
  • skepdic.com/adhoc.html
  • Douglas Biklen, referring to the result of the O.D. Heck test:
    •  “I think that test has severe problems. I mean, one, you’re putting people in what might be described as a confrontational situation. That is, they’re being asked to prove themselves. As I pointed out, confidence appears to be a critical element in the method. If people are anxious, they may, in fact, freeze up in their ability to respond. They may lose confidence. They may feel inadequate.”
Quick History of FC
  • Rosemary Crossley developed FC in Australia in 1974
  • Douglas Biklen visited Crossley’s Melbourne clinic in 1988
  • Biklen introduced FC to the US in a paper in The Harvard Educational Review in 1990.
  • Biklen founded the Facilitated Communication Institute at Syracuse University in 1992.
  • FC was discredited beginning in the early 1990s.
  • In 1994 the American Psychological Association opposed the use of FC
  • The Facilitated Communication Institute changed its name to the Institute on Communication and Inclusion, with Christine Ashby in charge.
  • In response to an international resurgence of FC, Ralf W. Schlosser at Northeastern University led a systematic review in 2014 of more than 20 studies of FC, finding overwhelming evidence that the facilitator was controlling the message.
The Strange Case of Anna Stubblefield
  • Anna Stubblefield was a tenured professor of ethics at Rutgers University, 41 years-old, and married with two children.
  • DJ was a 30 year-old with cerebral palsy. A state doctor had found he had the mental capacity of a toddler, unable to carry out “preschool-level tasks.” He was 5 feet, nonverbal, wore diapers, and required assistance with walking, bathing, dressing and eating.
  • Stubblefield said she communicated with DJ using FC.
  • Over a two-year period they fell in love and had sex in 2011.
  • Stubblefield was convicted of two counts of aggravated sexual assault in 2015 and sentenced to 12 years in prison.
  • A judge ordered Stubblefield to pay $2 million in compensatory damages and $2 million in punitive damages to DJ and his family in the civil case stemming from the assault.