The Unusual and Excessive Hype of FC
I recently came across a 1992 article by Margo Prior and Robert Cummins called Questions About Facilitated Communication and Autism. This “early” article clearly outlined the problems with Facilitated Communication (FC).
Part of me has wanted to believe that Biklen and his disciples were not fully aware of the problems with FC and that they, perhaps naively, promoted it without fully realizing its harms. But this article makes it difficult to argue that Biklen moved forward with the promotion of FC without knowing the extent of critics’ concerns.
The facilitator “supports” the individual at the wrist. (Syracuse University Training Video, 1991)
Prior and Cummins had eight years of experience observing and analyzing FC in Australia at the time the article was published, roughly seven years in advance of Biklen. The Australian government, too, had critically evaluated FC through its review panels, though Biklen and FC ideologues appeared to reject these results. As noted in the following quote, concerns about the proliferation of FC sparked publication of the Prior and Cummins’ article.
These critical reviews have been ignored by Douglas Biklen as he promoted “Facilitated Communication” at the University of Syracuse School of Education. Because of this unusual and excessive media hype, we are publishing a review article from Australia presenting the best empirical critique available to date. —Eric Schopler, editor (p. 331)
Sadly, three decades later, the questions Prior and Cummins had about FC still apply. And, here, I would include FC in all its variant forms (e.g. Spelling to Communicate, Rapid Prompting Method, Supported Typing—whatever its being called to hide the fact that it’s FC). Prior and Cummins wrote:
One major issue involved the degree of assistance offered by the facilitator who may hold the client’s hand, arm, elbow, or wrist during communication or alternatively may hold the communication board in front of the client’s operative motor response. (p. 333, emphasis mine)
Facilitator holding a device in the air while “supporting” the client at the wrist. (Syracuse University Training Video, 1991)
In other words, critics understood in 1992 that the typed messages could be influenced regardless of whether the facilitator held on to their client or alternatively held onto the letter board as the client pointed to it.
Prior and Cummins posited that FC was a faith-based, rather than evidence-based approach; something it took me years to understand but with which I now agree.
Facilitators, apparently, need(ed) a “strong belief in the power of the technique” to make it work. For proponents, this explained why FC seemed to work with some people but not with others (e.g., even close family members were not always able to communicate with their loved ones via FC) and why testing FC often resulted in failure (e.g., presumably, doubting FC reduced its efficacy).
The authors expressed concerns that FC was being adopted in the absence of any empirical validation, that parents were being pressured into using the technique (or, conversely, made to feel guilty for deciding not to adopt it), and that individuals who expressed concerns about FC were characterized as “lacking faith, of being unsympathetic, of being academic and unethical.” Peruse the comment section on our blog posts and you’ll see these accusations have not changed in the intervening years.
Prior and Cummins, too, pushed back on the idea that autism is primarily a motor-planning problem. They expressed concern over the “high degree of physical intervention provided by the assistant, even when it was clear that the ‘autistic’ person had sufficient motor skills to select the letters required for their communications quite independently.” They pointed to extant Augmentative and Alternative Communication (AAC) options (e.g., inexpensive devices “which enable even the most physically limited individuals to active switching mechanisms that enable independent communication”).
As with all reliably controlled tests that came after their article was published, Prior and Cummins noted that “when some objectivity was achieved…there was evidence that the communication emanated from the facilitator” and, as they noted, “albeit perhaps unconsciously.” (See Controlled Studies and Systematic Reviews)
In a rather disconcerting disclosure, Prior and Cummins suggested that some of the individuals enrolled in the FC program at the DEAL Centre in Melbourne, “did not appear to have a diagnosis of autism but were given this label” (purportedly to bolster the FC program at the time). They pointed out that reported communications from clients “seemed to negate” well-documented characteristics of autism and cautioned that “the diagnosis of autism in many of the people involved with the method has not been established.”
The authors raised additional concerns about:
Unexpected literacy skills,
Atypical language content,
Loss of written language skills when the facilitator was not present or, as in the example given, the facilitator “let her mind go blank,”
Atypical level of giftedness in individuals subjected to FC which was “at variance with known population data on autism,”
The intrusive nature of support that appeared to build dependence, not independence, on the assistant,
The lack of explanation for the fact that “even after up to 2 years of such support no independent communication appears possible,”
False allegations of abuse (e.g. a case involving Rosemary Crossley and eight of her trained facilitators).
One of the hallmarks of acceptable treatment, Prior and Cummins state, is that it should do no harm. In light of this, they reported, a strong case could be made for the “inadvertent misuse and misinterpretation of facilitated communication.”
Prior and Cummins were not alone in their attempts to convince proponents to use caution about their (as yet unproven) claims. Since their article was published, researchers, reporters, critics, and skeptics of FC consistently raised (and continue to raise) the same exact concerns. (See Critiques of FC). In addition, controlled studies have shown strong evidence of facilitator influence over FC-generated messages. Facilitators, too, have been involved with false allegation of abuse cases and facilitator crimes associated with the misuse of FC.
And, yet, like Biklen in 1992, current-day proponents continue their unusual and excessive hype of FC by promoting it in the media through feel-good books and movies, despite the long-standing evidence against it.
Syracuse University’s Facilitated Communication Institute even changed its name in 2010 to “fly under the radar” when the FCI received critical attention because of a spate of false allegation of abuse cases related to the misuse of FC. (Engber, 2015). To my knowledge, the FCI has undergone at least one additional name change since then. As of this posting, the FCI is now called Inclusion and Communication Initiatives. Their website states that it supports “Typing to Communicate” a name they use to mask the fact that they are teaching Facilitated Communication (FC) to workshop attendees twice a year.
Syracuse University’s “Typing to Communicate” (aka Facilitated Communication) workshop to teach people how to become facilitators. (Syracuse University, 2022)
Given that the concerns Prior and Cummins raised about FC in 1992 still exist today and proponents continue to ignore them, I’ll close with this quote from their article:
Adherents of this treatment should ask themselves about the risks and disadvantages to the autistic person and his or her caregivers of engendering belief in a possibly unrealizable “breakthrough.” The adjustment of the family may be severely compromised, for example, by the family being made to feel guilty for years of neglect of their child’s “true” capacities, or by feeling resentment when their child will not communicate with them. Such beliefs may also sabotage other educational programs and may result in the generation of expectations which the autistic person is unable to meet in everyday life. In such cases the price for uncritical adoption of this method may be very high indeed. (p. 335)
Reference:
Engber, Daniel. (2015, October 25). The Strange Case of Anna Stubblefield. New York Times.
Prior, Margot and Cummins, Robert. (1992). Questions about Facilitated Communication and Autism. Journal of Autism and Developmental Disorders. Vol. 22 (2); 331-337.