In my post on facilitated communication (FC), I mentioned that I had not done much research on the topic. I presented my impression of it on the basis of a trial run with my brother, Michael. For those of you who have not been following my blog, Mike is my older brother who is autistic, low functioning and nonverbal. I did some further reading about FC.

History of FC

Australia

Rosemary Crossley developed augmentative and alternative communication (AAC) for individuals with cerebral palsy while working at St. Nicholas Hospital in Melbourne, Australia. [1] It was successfully used to enable the release of a severely disabled patient from institutional care through the use of AAC (now known as FC). This story along with the history of the development of this technique was documented, in the book Annie’s Coming Out written by Anne McDonald and Rosemary Crossley, and later made into an award-winning movie. [2]

United States

In 1989, Douglas Biklen [3] began applying this technique to autistic individuals. [4] Though his work at Syracuse University, FC became very popular in the United States.

Bernard Rimland, founder of the Autism Research Institute noted in 1991 that FC seemed to have a promising future. He also noted that further research was needed to show its efficacy and proposed several areas which required additional research. One proposal was an experiment where the subject would be shown an object out of sight from the facilitator. Then FC would be used to ask the subject the identity of the object. “To my knowledge, this simple study has not been done in any formal way.”  [5]

I was right!

Tests similar to that suggested by Rimland were performed, and FC was not validated:

“Controlled research using single and double blind procedures in laboratory and natural settings with a range of clinical populations with which FC is used has determined that, not only are the people with disabilities unable to respond accurately to label or describe stimuli unseen by their assistants, but that the responses are controlled by the assistants.” [6]

My favorite

The best characterization, in my opinion is by Julie Riggot:

“The obvious or subtle influences of facilitators were shown to be the equivalent of the Ouija-board [7] effect or the Clever Hans [8] phenomenon. While the Ouija board obviously uses hands-on control to move a device across a board, the story of Clever Hans shows that touch is not even necessary.” [9]

Not a joke

Just as those who refuse their children vaccinations based on distrust of scientific evidence, FC is still advocated by some. [10] The wish to contact their dearly departed, living autistic children is very strong, and many distraught parents will grasp at the slimmest of chances for such contact.

Harm

Dr. Rimland noted four cases where autistic children accused their caregivers of sexual abuse through what he calls the “misuse of facilitated communication”. [11] Caregivers were subjected to legal action and charges were eventually dismissed when accusations were more closely examined and found to be suspect. Rimland attributed these unfortunate cases to “over-facilitated miscommunication: probable inadvertent fabrication by a “facilitator” whose zeal and imagination have outrun his or her competence and good judgement.” [12] Prosecutors used evidence of FC to bring several cases of sexual abuse against parents and caregivers of severely handicapped children, [13] [14] which were found later to be wrongful accusations. The courts in New York State (1992) have decided that FC is not allowed as evidence. [15] Since then, the policies of the American Academy of Child & Adolescent Psychiatry (endorsed by the American Academy of Pediatrics), American Psychiatric Association and the American Association on Mental Retardation have all adopted policies that mention the lack of scientific evidence supporting FC and recommend against using it. [16]

At the very least…

Perhaps there is a place for FC if appropriate subject selection, training of facilitators and isolation of facilitator bias can be accomplished. In the hands of perhaps well-intentioned, under-trained practitioners, it can have deadly consequences.

My experience

Although I am pleased that my impressions of FC as demonstrated by my brother’s caregivers are supported by scientific evidence, I worry about the parents who would do anything to talk with their autistic children. As a sibling, I have an idea of what that is like.