Do Critics of FC “Presume Lack of Competence”? Part IV (Wheeler, Jacobson, Paglieri, and Schwartz)
This blog post is the fourth in a series exploring Broderick and Kasa-Hendrickson’s assertions that critics of Facilitated Communication (FC) “presume lack of competence” in individuals being subjected to FC. I am reviewing the four articles they cite as “proof” of their claim before circling back to review their case study, “Say Just One Word at First.” (See note below).
If you’ve been following the series, you will understand how ludicrous and ill-informed this claim is, given the training and expertise of the researchers they cite.
Marion Pitsas, from the O.D. Heck Center, works with one of her students. (Prisoners of Silence, 1993)
The problem for Broderick and Kasa-Hendrickson (and other proponents), I’m beginning to think, is not in how critics feel about and treat their clients, but in how critics feel about and treat FC.
Each researcher we’ve looked at so far responded to FC by asking legitimate questions about authorship and potential facilitator influence that led to a systematic exploration of FC in reliably controlled conditions.
These people—often demonized in the pro-FC literature--understood the gravity of the situation and the possible life-changing effects of FC on the individuals they served, regardless of whether proponent claims of independence could be proven true or false. Resolving the issue of facilitator influence was—and is--enormously important not only to the researchers, but to those being subjected to it.
As today’s authors, Douglas L. Wheeler, John W. Jacobson, Raymond A. Paglieri, and Allen A. Schwartz put it:
The ability to objectively demonstrate relatively high communicative competence would, by prevailing rights statutes, provide individuals with dramatically increased opportunities to exercise their civil rights to self-determination. Some communications will be the basis for actions that have major consequences (e.g., requests for changes in living arrangements, medications, planned services and training, vocational involvement, and other treatments).
But, they also understood that
Accepting a communication subject to facilitator influence as representing client preferences undermines person-centered planning.
As Stephen Camarata wrote in a recent article “Autistic people using AAC have a right to message authorship protections.”
What makes today’s article unique is that some of the people mentioned in the study were also featured in the 1993 documentary “Prisoners of Silence.” If you haven’t watched the documentary or read the O.D. Heck study in full, I strongly suggest you do so.
Wheeler, D.L., Jacobson, J.W., Paglieri, R.A., and Schwartz, A.A. (1993). An experimental assessment of facilitated communication. Mental Retardation. Vol 31 (1), 49-60.
This research study, among the first of its kind in the U.S., was designed to understand and validate authorship in FC. It began “with every expectation that it would provide at least some objective evidence that communications were valid.”
Researchers at the O.D. Heck Center set up a screen so that the facilitator (right) could not see the pictures shown to the participant (blocked from camera view). (Prisoners of Silence, 1993)
In the summer and fall of 1991, clinical staff at the Autism Program of O.D. Heck Developmental Center in Schenectady, N.Y., became interested in FC. Three of the staff members received training through Syracuse University and, in turn, trained other clinical, supervisory, and direct care-workers—21 in all. At the time of the study, 25 people with autism were being facilitated.
The five professionals and 4 direct-care staff selected for the study “believed firmly in the foundation, premises, and processes of facilitated communication” and were “considered to be especially committed to and concerned about the well-being of their clients.” Hardly the description of people who “presume lack of competence” in the people they serve.
In fact, the 12 participants chosen to participate in the study had all demonstrated to their facilitators an ability to reliably type at least whole single words during FC. Nine of the 12 participants were reported or observed to “regularly type out full sentences” and/or “engage in extended conversations” while being facilitated.
Before the research project began, informed consent was obtained via facilitation. But, because the validity of FC had not yet been independently verified, permission was also obtained from the participants’ parents, guardians, or facility consent committee. The participants were fully informed of the nature of the study by their facilitators who covered seven major points:
Our primary purpose is to show others that facilitated communication is real.
We want others to know that what is typed are your words, not mine (i.e., the facilitator’s).
To do this we are going to do a research project.
We would like your help in doing this.
We will be showing you some pictures and asking you to type in the name of the picture. This way we can prove that you are controlling the typing.
We will be filming while you and I (the facilitator) do this. This way we can show others that I could not see the picture.
Are you willing to help by taking part in the project?
I include these points because proponents of FC seem to believe that their clients would not have the capacity to understand the importance of such an activity. By proponents’ own logic, I think these 12 participants would be insulted by their assertions. All participants responded positively via facilitated communication.
Before and during the testing, facilitators took the following measures to ensure participants’ success:
Desensitized them to the testing room and table beforehand,
Chose pictures (e.g., stimuli) of everyday objects familiar to the clients,
Provided verbal prompts and support throughout the activity,
Tested the participants in short segments to minimize fatigue,
Provided breaks as needed when participants seemed inattentive or agitated.
Pictures chosen for the study were common, everyday items for the participants to label or describe under three controlled conditions. (Prisoners of Silence, 1993).
Basically, the facilitators and participants were asked to identify pictures under three conditions:
Facilitated Condition. Only the participant saw and was asked to identify or describe a picture using FC.
Not Facilitated Condition. Only the participant saw and was asked to identify or describe a picture without physical contact with the facilitator. The facilitator could use supporting verbal prompts.
Distractor Condition. This condition was divided into two subcategories:
Distractor (Same). The participant and facilitator saw the same picture. The participant was asked to describe or identify the picture using FC.
Distractor (Different). The participant and facilitator each saw a different picture. The participant was asked to describe or identify the picture he or she saw using FC.
Judges (professionals within the O.D. Heck Center) unfamiliar with FC were chosen to determine the accuracy of the responses given for a total of 180 trials. The outcome of the tests was clear:
Of these 180 trials, there were no clear correct responses to the participant’s stimulus card. (emphasis mine)
Current day proponents argue that this test was unfair because individuals with autism have difficulty with word-finding skills—particularly under pressurized situations. However, the problem in the O.D. Heck study was not that the individuals didn’t respond. Plenty of responses were given during each of the conditions. In addition, researchers documented “spontaneous” FC-generated communication that occurred in between tasks.
No, the problem was that the responses given by participants were 1) unintelligible, 2) based on pictures the facilitators had seen, or 3) correctly spelled words, but unrelated to the pictures seen by the participants (e.g., facilitator guesses).
The authors wrote:
These unanticipated findings are, even accepting the constraints that are implied by a small number of participants, unusually dramatic, consistent, and very clear. For these pairs, composed entirely of participants who were almost a stereotype (in literary description) of the most appropriate treatment population, and paraprofessionals and professionals who are both skilled and experienced in working with people who have autism and highly motived to serving them effectively, there is very clear, uncontestable proof of what we can only call facilitator control. (emphasis mine)
The facilitators were devastated by the results—watch them on Prisoners of Silence if you don’t believe me. And this is, I think, why proponents like Broderick and Kasa-Hendrickson take a dismissive stance toward this study.
All indications are that the facilitators were unaware of the extent to which they were influencing their client’s typing. In hindsight, this makes sense considering their profound belief in FC. The authors of the O.D. Heck study insightfully wrote that they would “expect little disconfirmation of assumptions about facilitated communication to emerge from content obtained using facilitated communication.” Daniel Wegner wrote about this same effect in his article “Clever Hands: Uncontrolled Intelligences in Facilitated Communication,” indicating that a belief by facilitators that FC could work increased the chances that it would work.
And here is, I believe, one of the most important take-aways from the Wheeler, Jacobson, Paglieri, and Schwartz study:
Because of their belief in FC, facilitators are “in an extremely poor position to objectively ‘test’ the validity of this type of communication.”
Next time, I will be returning to Broderick and Henderson’s article “Say Just One Word at First”: The Emergence of Reliable Speech in a Student Labeled with Autism
Note: Broderick and Kasa-Hendrickson cited these specific studies in their article Say Just One Word at First”: The Emergence of Reliable Speech in a Student Labeled with Autism as “proof” that critics “presume lack of competence” in individuals being subjected to FC:
Calculator, Stephen N. and Singer, Karen M. (1992, November). Letter to the editor: Preliminary validation of facilitated communication. Topics in Language Disorders. Vol 13 (1); ix-xvi.
Green, Gina; Shane, Howard C. (Fall, 1994). Science, Reason, and Facilitated Communication. Journal of the Association for Persons with Severe Handicaps, vol. 19(3), 151-72.
Jacobson, J.W., Mulick, J.A., 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.
Wheeler, D.L., Jacobson, J.W., Paglieri, R.A., and Schwartz, A.A. (1993). An experimental assessment of facilitated communication. Mental Retardation. Vol 31 (1), 49-60.
You can read all the blog posts in this series at these links (I’ll make them “live” as they are published over the next few weeks).
Do Critics of FC “Presume Lack of Competence”? Part I: Calculator and Singer
Do Critics of FC “Presume Lack of Competence”? Part II: Green and Shane
Do Critics of FC “Presume Lack of Competence”? Part III: Jacobson, Mulick, and Schwartz
Do Critics of FC “Presume Lack of Competence”? Part IV: Wheeler, Jacobson, Paglieri, and Schwartz
Do Critics of FC “Presume Lack of Competence”? Part V: Review of Broderick and Kasa-Hendrickson
Do Critics of FC “Presume Lack of Competence”? Part VI: In Sum, No.