Ethical Issues Related to FC Then and Now: Review of Dayan and Minnes (1995)
I recently came across a 1995 article titled “Ethical issues related to the use of facilitated communication techniques with persons with autism” published in the journal Canadian Psychology (Psychologie Canadienne). My own direct involvement with FC had ended by 1995, but I’m still fascinated when I come across these “early” articles and learn how much people already knew about the dangers of FC and how reluctant (some) people were at definitively taking a stand against its use. Almost all these early studies called for additional empirically sound research to prove proponent claims of independent communication and, yet here we are at the end of 2024, and such evidence (still) does not exist. (See Systematic Reviews). As Dayan and Minnes noted in their article, over 30 authorship studies had (by 1995) been conducted using a variety of tests designed to rule in or rule out facilitator control and/or measure achievements made as a result of FC training. Message-passing is, perhaps, the most well-known and debated. Despite the anecdotes and testimonies by proponents who claimed their clients and loved ones could independently produce “highly sophisticated communications” via FC, reliably controlled studies pointed to the facilitators as (often unwitting) authors of FC-generated messages.
Dayan and Minnes seemed to start where most people new to the topic of FC start: by giving the technique and its proponents the benefit of the doubt. From a historical standpoint, it’s not that difficult to see the authors of the article struggling with what to do with this “controversial” technique that seemed to have the potential of giving individuals with profound communication difficulties a chance of achieving complete communicative independence, but, when tested under controlled conditions, failed to produce the sophisticated and independent communications that proponents claimed. They also called the technique “intrusive” and wondered if, “given the lack of empirical data supporting the validity of FC,” psychologists (the target audience for the article) should be involved with the technique at all. But their concern about losing clients if they (the psychologists) “rejected the technique outright” seemed to be affecting their view of how to proceed. Their concern about alienating facilitators (often parents of individuals with profound autism) seemed to outweigh the fact that participating in the use of FC could be a breach of their ethical principles.
Citing the Canadian Psychological Association’s (CPA) 1991 ethical principal of Respect for the Dignity of Persons (e.g., the “expectation that all individuals have a right to be treated as people rather than objects), Dayan and Minnes highlighted the “positive consequences” of FC featured in pro-FC literature (paraphrased from page 184 of the article):
FC may change people’s perceptions regarding the abilities of people with autism
People with autism who have difficulty using spoken language and/or gestures may only be able to communicate their understanding of language using FC
FC may contribute to “new positive self-fulfilling prophecies” as expectations of individuals with autism are raised
Jeff Powell’s body is turned away from the keyboard while FC founder Douglas Biklen and Powe'll’s facilitator look at the letter board. (from Prisoners of Silence, 1993)
To their credit, Dayan and Minnes also pointed out the “negative consequences” of FC (paraphrased from page 185 of the article):
FC requires that clients be in (close) proximity to a facilitator to work and may contribute to dependence, not independence
Clients using FC may develop an “abdication pattern” of responsibility (e.g., they perform at a “higher level” independently than when using FC—the exact opposite of what proponents claim)
Clients may be influenced “unwittingly or otherwise” by facilitators and are, essentially “being used as a puppet”
Proponents are not giving “due consideration” to whether their clients understand the symbols and meanings of written language (e.g., alphabet names, syntax, semantics) before implementing FC (often at the expense of legitimate, evidence-based communication systems)
Dayan and Minnes also point out that proponents place a “heavy emphasis” upon presuming competence and that professionals who question FC and/or want to test its validity are accused of “doubting the individual’s competence” and are “limiting their chances for integration and acceptance.” The authors also state that wanting to proceed carefully with FC (analyzing the risks and benefits of using the technique, testing for authorship, etc.) is a separate issue from believing that individuals with complex communication needs have the potential to learn and develop verbal and written communication skills. In other words, testing the validity of FC shouldn’t be discouraged by (unfounded) proponent claims that researchers don’t support communicative autonomy for people with disabilities.
Another issue Dayan and Minnes raise is informed consent for participation in research projects and psychological assessments. They also, briefly, discuss the issue of receiving medical treatment or counseling based on FC-generated messages. Using FC in these circumstances is problematic for several reasons which I’ve paraphrased from page 185 of the article:
Individuals with profound autism (or those with complex communication needs) may not have the comprehension skills to understand the proposed project or procedures independently and without facilitator interference
Informed consent must be obtained without “undue coercion or influence” of another person and individuals being subjected to FC are at a greater risk of being influenced by facilitators (unwittingly or otherwise)
Counseling for non-speaking individuals with autism “would be considered inappropriate” (unless the clients could communicate independently using evidence-based AAC) and, because FC authorship is in question, it is not clear who, exactly, is receiving the counseling (the individual or the facilitator)
Image by Goh Rhy Yan
The second ethical principal Dayan and Minnes considered in their article was Responsible Caring (e.g., the obligation of psychologists to “evaluate potential risks and benefits of a treatment and to do no harm”). They point out that psychologists’ responsibilities in this area include:
Not contributing to the false hope and expectations of a technique that’s yet to be validated
Informing parents/clients of the potential risks involved with the use of FC (e.g., lack of empirical evidence, dependence on the facilitator, false allegations of abuse)
As psychologists are often called upon to perform psychological assessments, Dayan and Minnes also discuss FC and Intelligence Testing, which has some of the following (negative) issues which I’ve paraphrased from page 187 of the article:
Using FC during standardized tests violates administration procedures
The individual with complex communication needs may not understand test stimuli or instructions
Validity of the test results may be compromised if the facilitator influences the responses
Test scores may be elevated due to facilitator influence and may “lead to expectations which surpass the individual’s capabilities” and may cause emotional distress
Dayan and Minnes did not spend a great deal of time discussing false allegations of abuse and FC, though it is mentioned briefly a couple times in the article. Anyone who’s followed FC for any amount of time knows that false allegations of abuse have plagued facilitators since its inception (including founder Rosemary Crossley and 8 of her facilitators—see False Allegations). When reliably controlled authorship testing has been conducted in these cases, it’s been shown that the facilitators, not those being subjected to FC, were the authors of the messages. But what I thought interesting and most poignant about their discussion on this topic was Dayan and Minne’s comment that:
Not only are psychologists responsible for protecting disabled children from alleged abuse, they are also responsible for protecting both the child and his or her family from potential abuse by trusted facilitators who unwittingly may be influencing the child’s communication. (p. 187)
They point out that (in 1993) the American Academy of Child and Adolescent Psychiatry advised that “information obtained via FC should not be used to confirm or deny allegations of abuse or to make diagnostic or treatment decisions.” Most organizations opposing the use of facilitator-dependent techniques such as FC include this caution in their opposition statements.
Dayan and Minnes go on to discuss possible alternatives to FC (including the use of legitimate, evidence-based AAC) but stop short of opposing FC use. In fact, they encourage psychologists not to dismiss the technique outright, which I find frustrating. I get that, in 1995, there may still have been hope that proponents would conduct reliably controlled authorship testing to prove their claims of independent communication or that, one day, someone might achieve independence using what Dayan and Minnes themselves described as an intrusive and facilitator-dependent technique. But, today, at the end of 2024, we are still dealing with these same issues and, in my opinion, are no closer to stopping the use of a technique that the scientific community knew was not valid some 30 years ago (although I still want to believe more people don’t believe in the technique than do).
People who believe in FC seem to be aware of the inherent dangers of using the technique, but, perhaps in an act of willful ignorance, resist conducting empirically sound testing to rule in or rule out facilitator control. Some of these people may even know deep down inside that FC (in whatever variant form they’re using) can’t work as an independent form of communication, but they just can’t quite let go of the illusion that it does work. I’ve come to view FC as a coping strategy not a communication technique.
We frequently get messages by proponents claiming that their child or client is “happier” using FC, as “evidenced” by their (unproven and undocumented) change in behavior, but I wonder. Could these changes in behavior (if they exist) be attributed to the abdication pattern (e.g., passivity) that Dayan and Minnes discussed in 1995? When I watch video after video of FC sessions (and by FC, I mean all variants, including Spelling to Communicate, Rapid Prompting Method, Spellers Method) where facilitators call out letters while their clients stare off into space or have their eyes closed or poke at the letter board in what appears to me to be self-stimming behavior, I wonder just who is being pacified with FC use. And, again, I ask for the umpteenth time, where is the empirical evidence that FC works without undue influence and control by the facilitators? Maybe in 2025, proponents will provide us with some valid answers.
References and Recommended Reading:
Bebko, J.M., Perry, A. and Bryson, S. (1996). Multiple Method Validation Study of Facilitated Communication: II. Individual Differences and Subgroup Results. Journal of Autism and Developmental Disorders, Vol. 26 (1), 19-42. (For more information about abdication patterns and FC)
Dayan, J. and Minnes, P. (1995). Ethical issues related to the use of facilitated communication techniques with persons with autism. Canadian Psychology/Psychologie canadienne. 36(3), 183-189. Doi: 10.1037/0708-5591.36.3.183
Felce, David. (1994). Facilitated Communication: Results from a Number of Recently Published Evaluations. British Journal of Learning Disabilities. Vol. 22
Heinrichs, P. (1992, February 16). Suffering at the Hands of the Protectors. The Sunday Morning Herald.
Heinrichs, P. (1992, February 16). State 'tortured' family – 'tragic'. Sunday Age (Melbourne, Australia) Late Edition, pp. 1
Hemsley, B., Bryant, L., Schlosser, R.W., Shane, H.C., Lang, R., Paul, D, Banajee, M., Ireland, M. (2018). Systematic review of facilitated communication 2014-2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with disability. Autism and Developmental Language Impairments, 3, 1-8. DOI: 10.1177/2396941518821570
Jacobson, J.W., Mulick, J.A., and Schwartz, A.A. (1995, September). A history of facilitated communication: Science, pseudoscience, and antiscience. Science Working Group on Facilitated Communication. American Psychologist. 50 (9), 750-765.
Lilienfeld, S., Marshall, J., Todd, J., & Shane, H. (2014). The persistence of fad interventions in the face of negative scientific evidence: Facilitated Communication for autism as a case example. Evidence-Based Communication Assessment and Intervention, 8(2) 62-101. https://doi.org/10.1080/17489539.2014.976332
Mostert, M. (2001, June). Facilitated communication since 1995: A review of published studies. Journal of Autism and Developmental Disorders, 31 (3), 287-313. DOI: 10.1023/A:1010795219886
Mostert, M. (2010). Facilitated communication and Its legitimacy — Twenty-first century developments. Exceptionality: A Special Education Journal, 18 (1), 31-41. DOI: 10.1080/09362830903462524
Prior, Margot and Cummins, Robert. (1992). Questions about Facilitated Communication and Autism. Journal of Autism and Developmental Disorders. Vol. 22 (2); 331-337.
Schlosser, R.W., Hemsley, B., Shane, H. et al. (2019). Rapid prompting method and autism spectrum disorder: Systematic review exposes lack of evidence. Review Journal of Autism and Developmental Disorders, 6, 403–412.
Sobel, S. (2018). Facilitated Communication Redux. Skeptic. 23.3
Todd , J.T. (2012) The moral obligation to be empirical: Comments on Boynton's “Facilitated Communication—what harm it can do: Confessions of a former facilitator”. Evidence-Based Communication Assessment and Intervention, 6 (1), 36-57. DOI: 10.1080/17489539.2012.704738
Blog Posts:
FC in the Context of Psychotherapy
Flaws in the Informed Consent Process for FC in VT’s Designated Agency System