FC’s Damage to the Reputations of Institutions
Occasionally, I receive an email from people associated with Syracuse University or the University of Virginia in response to a talk I’ve given or article I’ve written asking that I not call out the institutions as a whole for promoting Facilitated Communication or any of its variants when the promoters do not make up the majority viewpoint.
My response is twofold.
First, promoters of FC at colleges and universities use their institutions’ names in promotional materials, on websites, videos, and television interviews, as well as, on conference materials, and in journal and newspaper articles. FC exists, in part, because, 30 years ago, Syracuse University administrators turned a blind eye to evidence when the “Facilitated Communication Institute” was established. It is documented that administrators, in 2010, changed the name “Institute on Communication and Inclusion” to “fly under the radar,” but who were they hiding from? The scientific community, of course, but could it have also been from their own university community? The strategy worked. FC exists because university community members, as a whole, allow the practice to continue, either because they don’t realize it still exists or they know and are resigned to the fact that it simply won’t go away.
Second, proponent material includes messaging about “exciting new research” coming out of “prestigious institutions” (of late, the University of Virginia and Cambridge). This research, flawed as it is, is fueling a resurgence of FC under the guise of Spelling to Communicate. It would be naïve to think proponents don’t know that the names of their institutions matter to parents who are trying to do right by their children. It is an effective marketing technique they leverage to lend credibility to a pseudoscientific practice.
And, finally, the promotors on campuses across the United States are often tenured professors who ought to know the difference between evidence-based methods and pseudoscientific practices. At the very least, these professionals should be responsive the critiques of their peers (e.g., in the case of FC and RPM, significant evidence of facilitator influence). Educators and researchers at these institutions need to be held at a higher standard than those of the general public. They either need to make changes to their techniques and practices or stop it altogether. So far, neither have happened.
So, as uncomfortable as it must be for practitioners dedicated to evidence-based practices, their institutions’ implicit or explicit of acceptance of FC (in any of its forms) absolutely reflects poorly on the institutions as a whole.
That said, I also think it is important to shed light on programs within these institutions that strive to support individuals with disabilities and their families using evidence-based measures. Because of political pressures within these systems that often make speaking out against FC uncomfortable under the best circumstances there are some individuals who are to be commended for their courage to do so.
At Syracuse University, for example, the whole Communication Sciences and Disorders department has rejected FC because of its lack of evidence. On its official website, the CSD states its mission to be:
“…to foster a collaborative learning environment for faculty, students and colleagues in the community that furthers understanding of the science of communication as well as the scientific bases of clinical practice. We partner with our students in research and clinical endeavors that result in the generation and application of new knowledge. By cultivating critical thinking, advocacy, innovation and leadership, we enable students to advance scholarship in our field and to engage in interprofessional practice to provide optimal services to individuals with diverse cultural and communication needs.
The Department of CSD does not offer, study or affiliate itself with Facilitated Communication (FC) or Supported Typing (ST). [Their bold font, not an addition I made]
Another group of individuals that deserve recognition is a group from the University of Virginia who, in May 2019, wrote an open letter to the David Martel, Vice President for Communications and Mitchell Powers, Senior Multimedia Producer at UVA expressing concern that UVA Today’s reporting on Associate Professor Vikram Jaswal’s course, The Science and Lived Experience of Autism. Jaswal has become a leader in promoting the Rapid Promting Method (sometimes called Spelling to Communicate), a technique, the authors of the letter point out, is closely related to Facilitated Communication. FC is a technique has been thoroughly discredited by researchers and professional organizations and go on to state:
“While we recognize and value academic freedom of course content to which professors of the university are entitled, publicizing practices that are not supported by scientific evidence has potential to undermine the university’s efforts to establish an interdisciplinary team of experts engaging in research around autism. In the future, we encourage UVA Communications to carefully consider the content it covers related to autism to ensure that practices being portrayed to the public have a solid evidence base.”
The evidence-based program they refer to in the letter is UVA’s STAR project, described as an initiative led by the School of Education and Human Development in partnership with colleagues across the University that “aims to improve the lives of individuals with autism through groundbreaking research and innovative models for intervention and training.” Their Autism DRIVE gives researchers, students, parents, and professionals access to resources and aims to “find answers in areas that have the greatest potential to improve the lives of people with autism and their families.” Their research ranges from “basis neuroscience to applied practice.” Their Research Projects include pilot studies, STAR research in practice studies, and UVA Autism Research Core Services.
Another program on the UVA Campus is the Center for Healthy Brain Development, which is “committed to improve outcomes for individuals with intellectual and developmental disabilities by collaborating across grounds for progress across the commonwealth of Virginia through research and translation, clinical care and training, and policy and partnerships.
At times, it seems FC proponents are winning the battle in the popular press with their feel-good, miracle stories. But, perhaps less glamorously, there are amazing individuals—researchers, educators, psychologists, medical professions, speech and language pathologists, and communication experts—developing evidence-based programs and technologies that move our understanding of autism and other disabilities forward.
I think for people new to the issues surrounding FC, it might be easier to understand the harms FC causes, when yet another false allegation of abuse case hits the news cycles or facilitator crimes are committed. And, while I, personally, do hold institutions accountable for allowing pseudoscientific practices like FC, RPM, and Spelling to Communicate to continue, I am also sympathetic to the deep frustration of the professionals I have mentioned—people who have spent their careers supporting individuals with disabilities—whose good works are, at times, overshadowed by the specter of FC.
The sad and uncomfortable reality is that FC will continue to exist as long as proponents are allowed to continue, unregulated. Institutions, like Syracuse, the University of Virginia, and others do not, currently, require proponents to undergo controlled testing or to refrain from promoting the technique as if it is already proven (it is not). There are no standardized licensing requirements for the techniques and no oversight from organizations like ASHA and others who have position statements opposing its use.
I stand by my criticisms of these institutions while acknowledging that the good works of individuals who are promoting evidence-based techniques and methods need celebrating. Perhaps by educating parents, educators, researchers, and others about FC’s collateral damage to the reputations of these universities as a whole, change will eventually be made from the inside out.
Do you know of other evidence-based programs that deserve a shout out? Please let me know in the comments below.
Recommended Reading
Gorman, B.J. (1998). Facilitated communication in America: Eight years and counting, 6 (3), 64. Skeptic.
This article chronicles Douglas Biklen’s “discovery” of facilitated communication and, despite the scientific community’s rejection of the technique, his push to popularize its use at Syracuse University and throughout the United States.
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
This systematic review was conducted to inform the 2018 updated of the 1995 American Speech-Language-Hearing Association Position Statement on FC. Existing systematic reviews up to 2014 revealed no evidence that FC-generated messages were authored by the individual with disability. Authors conducted a search for evidence-based studies pertaining to authorship and FC. The review team concluded that there were no new studies on authorship and no evidence that FC is a valid form of communication for individuals with severe communication disabilities.
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.
The purpose of this systematic review was to examine the effectiveness of the rapid prompting method (RPM) based on the empirical demonstration of its effects. Claims that RPM is effective for enhancing motor, speech and language communication, and decreasing problem behaviors in individuals with autism spectrum disorder could not be corroborated. No studies met the inclusion criteria. Researchers called for controlled studies of RPM. Authors outlined criteria to ensure the effectiveness of future studies, including determining whether literacy skills could be demonstrated through the provision of evidence-based approaches.