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Facilitated communication

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Facilitated Communication (FC) is a scientifically discredited[1][2] technique whereby a paraprofessional called a "facilitator" tries to help a nonspeaking person communicate by pointing or typing. The best known uses of FC are in cases of autism, intellectual disability, and cerebral palsy. This technique has given great hope to many and grief to some, with no validated results.

The movement in favor of FC seems to have peaked in the 1990s and was severely impacted by a scathing Frontline report on PBS.[3]

Syracuse University used to maintain an institute, the Institute on Communication and Inclusion,[4] (originally called the Facilitated Communication Institute until 2006[5]) for the teaching and study of FC. Despite the fact that FC is used primarily for disabilities of the mind, the institute is not hosted by the psychology department, which should not be surprising given that the American Psychological Association takes an official stand against FC.[6] Syracuse University has since shut down this institute.

Debunker's toolkit[edit]

There are a few ways to check authorship:

  • Say or show something to the disabled person with the facilitator in a different room. Have the facilitator come back. Can the disabled person say what happened, even though the facilitator doesn't know? This is the most reliable way to check. Studies consistently find that the non-verbal person cannot communicate any information unless that information is known to the facilitator.
  • See if the person is looking at what they're typing.
  • Notice if their "voice" (word choice and tone) is consistent even with different facilitators.

Study of FC[edit]

Since the facilitator is used to communicate, it's easy to fall into circular logic (FC works because the facilitator told us that FC works). The best way to study the validity of FC is to show or say something to the disabled person when the facilitator is not in the room, and then see if the disabled person can use the facilitator to say what they saw or heard.

Evidence against FC[edit]

The facilitator believes that they are not the source of the messages due to the ideomotor effect, the facilitator's natural twitches and movements can direct the disabled person's hand, similar to the use of dowsing and ouija boards.

Publication of controlled studies peaked in the 1990s, with the near universal failure to validate the technique. The only positive studies were either testimonials, or very small poorly controlled experiments, making their validity dubious.[7][8][9][10]

Facilitated communication is opposed by many medical organizations, including the International Society for Augmentative and Alternative Communication (ISAAC).[11] ISAAC summary on FC noted that:[11]

  • Support for FC is primarily anecdotal.
  • Systematic reviews showed that FC authorship was attributable to the facilitators, not the persons with the disability.
  • Several allegations of sexual abuse were associated with FC.
  • The use of FC may be in violation of several articles of the United Nations Conventions on the Rights of Persons with Disabilities.

While some researchers have suggested that FC may work in a few cases, the quality of this research has called it into question. "Research Autism" has described it as having "limited negative evidence" and being "mildly hazardous."[12] Even though the person isn't physically injured, accidentally depriving them of the ability to communicate can seriously impact their quality of life.

Risks[edit]

The risks of misusing FC are serious:[13]

  • Falsely leading people to believe their loved one is talking to them
  • Failing to investigate more reliable communication methods, such as eye tracking, that could allow the person to actually communicate
  • Diverting funds and time from legitimate techniques
  • Taking away any real capacity that a disabled person may have to communicate (e.g. signs, pointing a pictures)
  • Making decisions (clinical, legal, or personal) based on FC communication, without clear proof of authorship
  • Dozens of false allegation of abuse have been made through FC

False allegations made using FC[edit]

There have been cases where allegations of abuse have stemmed from reports obtained by FC, only for it to be discovered that the facilitator was making the allegations.[14]

One in particular is the case of "Carla", who was removed from the care of her family several times because of reports of abuse made via FC. In her case and several others, the communication was tested and found to be invalid, showing essentially that the facilitator, rather than the subject, made the allegations, leading to pain for the family and subject, and expense for the state.[15][16] The court system has taken a dim view of FC.[17]

Other harms done by misuse of FC[edit]

Another case involved a woman sexually abusing a disabled man, claiming that he had given consent through FC. However, he was only "able" to communicate when she was the facilitator (not when other family members did so), and a court case found that he had never in fact expressed love for her or consent to sex.[18]

Facilitated communication was misused in the horrifying case of Jude Mirra, a young autistic boy. Jude's mother would move his hand while the boy wasn't even looking at the screen on which he was supposedly typing. Through facilitated communication, Jude supposedly claimed to have been physically abused in bizarre ways by his father. (Police found no corroborating evidence, and Jude had no injuries.) Yet the mother insisted that her son really had been abused, and this was one of the factors that led her to murder him in order to "protect" him from further abuse.[19] She claimed they "said goodbye to each other," and that Jude asked to be killed, yet it wasn't Jude talking.[20][21] This flagrant abuse of FC by a delusional woman shows the necessity of clear proof of authorship.

Similar unproven communication methods[edit]

The following alleged communication methods for non-verbal people are also scientifically unproven (and are allegedly just rebrandings of facilitated communication[22]):

  • Rapid Prompting (aka "Soma Rapid Prompt Method")
  • Supported Typing (this was the subject of a Frontline documentary, which exposed it for the fraud it was)

Alternatives[edit]

There are a number of legitimate augmented and alternative communication (AAC) methods that can allow a nonspeaking person to communicate.

If the person has a decent ability to control their hands, they can learn sign language or point to a letter board or tablet screen. They may be able to type on a phone or computer keyboard.

People who have limited motor control abilities may still be able to communicate without being touched. If they struggle to isolate their index finger, they may be able to hold a stylus or have it attached to their hand. If they tend to make errors due to clumsiness, they may be able to use a homemade "occluder" (a laminated paper square with a square cut out in the middle, which they can place over the correct option so they don't hit the wrong one).[23]

Pointers can also be attached to the head or held with the mouth if the person has decent head control. Pointers can even be attached comfortably to a hat. The show "Speechless" featured a character who communicated with a head-mounted laser pointer that he used to point to a board attached to his wheelchair.[24] Communication aids like these can be bought online.[25]

Eye-tracking technologies may help people with major disabilities be able to spell on a letter board without the risk of someone else controlling their movements.

While facilitated communication is not a scientifically backed option, therapists can explore other ways for a nonspeaking person to communicate.

References[edit]

  1. Facilitated communication and authorship: a systematic review by R. W. Schlosser et al. (2014) Augment. Altern. Commun. 30(4):359-68. doi:10.3109/07434618.2014.971490.
  2. Autism Wars: Science Strikes Back, Skeptical Inquirer
  3. Prisoners of Silence, directed by Jon Palfreman (October 19, 1993) Frontline (archived from February 5, 2009).
  4. Who We Are Institute on Communication and Inclusion, Syracuse University (archived from July 10, 2019).
  5. Facilitated Communication Institute Syracuse University (archived from February 3, 2016).
  6. http://www.apa.org/about/division/cpmscientific.html#4
  7. Mostert, M P. Facilitated communication since 1995: a review of published studies.Journal of Autism & Developmental Disorders. 31(3):287-313, 2001 Jun.
  8. Wheeler DL, Jacobson JW, Paglieri RA, Schwartz AA.An experimental assessment of facilitated communication. Mental Retardation, 1993 Feb;31(1):49-59.
  9. Michael Eberlin, Gene McConnachie, Stuart Ibel,and Lisa Volpe. Facilitated communication: A failure to replicate the phenomenon. Journal of Autism and Developmental Disorders.Volume 23, Number 3 September, 1993.
  10. Elliott W. Simon, Donna M. Toll and Patricia M. Whitehair. A naturalistic approach to the validation of facilitated communication.Journal of Autism and Developmental Disorders. Volume 24, Number 5 October, 1994
  11. 11.0 11.1 ISAAC Position Statement on Facilitated Communication Augmentative and Alternative Communication 30(4):357-358. doi:10.3109/07434618.2014.971492.
  12. Research Autism: Facilitated Communication and Autism
  13. http://www.skeptic.com/eskeptic/06-05-25.html
  14. Not Just the Wendrows: Sex Abuse Cases Dismissed After Facilitated Communication
  15. Gorman B.J. Facilitated communication: rejected in science, accepted in court-a case study and analysis of the use of FC evidence under Frye and Daubert.Behavioral Sciences & the Law. 17(4):517-41, 1999.
  16. SHARON L. HOSTLER, JANET H. ALLAIRE and RICHARD A. CHRISTOPH.Childhood Sexual Abuse Reported by Facilitated Communication. Pediatrics. 1993;91;1190-1192.
  17. Department of Social Services ex. rel. Jenny S. V. Mark S., 593 N.Y.S.2d 142 (N.Y. Family Court, 1993) Although his case does not relate directly to employment, it does relate to the testifying of persons with communication difficulties in court in general under the ADA. In 1993 this New York family court held that a child or children with autism, who allegedly had been sexually abused, would not be permitted to testify in court through the use of facilitated communication because:
    • (a) facilitated communication is not a form of communication that is generally accepted within the scientific community;
    • (b) the use of facilitated communication is not required by the ADA.
    (REF: 1993 MPDLR 17(4), p. 385)
  18. The Strange Case of Anna Stubblefield
  19. Mother Kills Autistic Son to Spare Him from Fictional Abuse
  20. New York businesswoman guilty of manslaughter in son's death - CNN
  21. Gigi Jordan Describes Last Moments With Her Son - Wall Street Journal
  22. The Pseudoscientific Phenom — Facilitated Communication — Makes a Comeback
  23. Star in Her Eye: A Year with Speak For Yourself, Part 2 (includes a photo of the homemade occluder)
  24. Wikipedia: Speechless (TV series)
  25. Health Products for You: Head Pointers And Mouth Sticks