Recently, I spent several days coding a research project on facilitated communication (FC). I watched videos accompanied by eye-tracking data to mark who was watching a tablet as letters or pictographs were touched. <\/p>\n
This post reflects my efforts to gather opposing research on FC and to properly compare the FC practices I observed to the scientifically supported concept of augmentative and alternative communication (AAC). I remain skeptical of FC but choose to offer a mix of perspectives within this blog entry. <\/p>\n
FC involves a second person, a facilitator, who “helps” another person point to letters, words, or symbols on a board, chart, or computing device. Most studies of FC have concluded that the facilitator is composing the thoughts being expressed.<\/strong> <\/p>\n The data I recorded suggested the facilitator’s eyes were on the screen, not the person supposedly communicating. I know it’s not a popular view within the autism community, but I found FC similar to watching teenagers with Ouija boards. The “spirits” mysteriously guide a pointer across the board, spelling out answers to questions.<\/p>\n Was this research project, conducted for a software developer, an outlier or reflective of other research? What has rigorous academic research found when testing FC? The data I coded were certainly not what the software developer had hoped to obtain. <\/p>\n There’s little debate among speech and language experts that augmentative and alternative communication (ACC) techniques help many people communicate.<\/strong> Few people today would criticize the use of sign language, Braille, pictographs, or Dynavox devices. How we communicate our ideas varies based on cultural norms, too. I know plenty of gestures that clearly communicate ideas. <\/p>\n Non-verbal communication is part of life. Most children start communicating by pointing. We learn to interpret body language and facial cues. <\/p>\n Verbal and text communication also varies. I prefer typing to speaking much of the time. I also use text-to-speech when I’m having difficulty reading. <\/p>\n There’s no single best way to communicate. Blind and Deaf communities have demonstrated that AAC enables individuals more access to daily activities, including school and work. <\/p>\n American Speech-Language-Hearing Association supports AAC in all its forms. However, ASHA and other professional organizations question facilitated communication (FC). The following is a statement from ASHA on FC:<\/p>\n Ad Hoc Committee on Facilitated Communication (FC) and the Rapid Prompting Method (RPM)\n<\/p><\/blockquote>\n About This Document: This position statement is an official policy of the American Speech-Language-Hearing Association (ASHA). The position was developed by the ASHA Ad Hoc Committee on Facilitated Communication (FC) and the Rapid Prompting Method (RPM)<\/p>\n Position Statement: Facilitated Communication<\/strong><\/p>\n It is the position of the American Speech-Language-Hearing Association (ASHA) that Facilitated Communication (FC) is a discredited technique that should not be used. There is no scientific evidence of the validity of FC, and there is extensive scientific evidence—produced over several decades and across several countries—that messages are authored by the “facilitator” rather than the person with a disability. Furthermore, there is extensive evidence of harms related to the use of FC. Information obtained through the use of FC should not be considered as the communication of the person with a disability. <\/p>\n Facilitated Communication (FC)—also referred to as “Assisted Typing,” “Facilitated Communication Training,” and “Supported Typing”—is a technique that involves a person with a disability pointing to letters, pictures, or objects on a keyboard or on a communication board, typically with physical support from a “facilitator.” This physical support usually occurs on the hand, wrist, elbow, or shoulder (Biklen, Winston Morton, Gold, Berrigan, & Swaminathan, 1992) or on other parts of the body. <\/p>\n ASHA first developed a position statement about FC in 1995 due to a lack of scientific validity and reliability (ASHA, 1995). This updated FC position statement takes a stronger stance against the use of FC than did ASHA’s 1995 statement. In the years since that position statement, there has been no credible scientific evidence of benefit and only growing evidence of the lack of efficacy and of the harms of FC. The use of FC risks harm to individuals with communication disabilities in that it may hinder or delay access to appropriate services and effective forms of intervention, including augmentative and alternative communication (AAC; see, e.g., Allen, Schlosser, Brock, & Shane, 2017; Brady et al., 2016; Iacono, Trembath, & Erickson, 2016; Logan, Iacono, & Trembath, 2017; Romski & Sevcik, 2016; Snell et al., 2010; Walker & Snell, 2013); Applied Behavior Analysis (ABA; Ivy & Schreck, 2016; Virues-Ortega, 2010; Vismara & Rogers, 2010); Functional Communication Training (Heath, Ganz, Parker, Burke, & Ninci,, 2015; Kurtz, Boelter, Jarmolowicz, Chin, & Hagopian); and other empirically supported interventions (ASHA, n.d.-a). The harms of FC also include false allegations of sexual abuse (Probst, 2005) and other forms of maltreatment (Boynton, 2012; Chan & Nankervis, 2014; Wombles, 2014). <\/p>\n ASHA recognizes the human right of communication, as expressed in the United Nations Convention on the Rights of Persons With Disabilities (UNCRPD; United Nations, 2006), the Universal Declaration of Human Rights (UDHR; United Nations, 1948), the International Communication Project (2014), and the Communication Bill of Rights by the National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC; Brady et al., 2016). FC is a technique that involves the person with a disability being dependent upon a “facilitator” to produce a message. The use of FC or other “facilitator”-dependent techniques (e.g., Rapid Prompting Method [RPM]; see ASHA’s Position Statement on RPM [ASHA, 2018]) is not consistent with the communication rights of autonomy and freedom of expression (Chan & Nankervis, 2014) because the messages do not reflect the voice of the person with a disability but, rather, reflect the communication of the “facilitator.” It must not be assumed that messages delivered via FC or any other “facilitator”-dependent technique (e.g., RPM) reflect the communication of the person with a disability. This position statement on FC does not pertain to independent typing without “facilitator” influence.<\/p>\n Recent systematic literature reviews of FC (Hemsley et al., 2018; Schlosser et al., 2014), based on research appropriately designed to determine the effectiveness of FC, demonstrate a lack of scientific studies to support the effectiveness of the technique and a preponderance of scientific evidence demonstrating “facilitator” influence and authorship of messages delivered by FC. In the almost 3 decades since FC was introduced, there has been no empirical evidence that messages composed using FC can be attributed to the person with a disability. Indeed, the conclusions of earlier systematic reviews (Felce, 1994; Jacobson, Mulick, & Schwartz, 1995; Mostert, 2001; Mostert, 2010; Probst, 2005; Schlosser et al., 2014; Wehrenfennig & Surian, 2008) are supported, and there have been no new authorship studies in the peer-reviewed literature since 2014 (Hemsley et al., 2018; Saloviita, Leppänen, & Ojalammi, 2014). That is, there is no scientific evidence that (a) FC provides access to communication or that (b) individuals achieve independence in communication through the use of FC. Rather, there is sufficient scientific evidence—obtained through numerous controlled and objective evaluations of the technique, including peer-reviewed studies—demonstrating that messages produced using FC are authored by the “facilitator” and not by the person with a disability.<\/p>\n Proponents of FC state that the technique reveals previously undetected literacy and communication skills in people with autism and other disabilities. However, these statements are made only on the basis of anecdotal reports, testimonials, and descriptive studies. Clearly, FC is a pseudoscience (i.e., a practice incorrectly framed as being based on scientific findings; Finn, Bothe, & Bramlett, 2005; Lof, 2011) and is “junk science” (i.e., faulty information or research used to advance specific interests; Agin, 2006). As such, the use of FC carries several negative and harmful consequences in that FC is not an effective form of communication and does not provide access to communication; denies the user’s access to their human right of communication; costs time and money that cannot be retrieved, and, hence, reduces opportunities for access to timely, effective, and appropriate treatment for independent communication; gives false hope to families of individuals with little or no speech; and has been associated with significant preventable harms arising through false allegations of sexual abuse (Probst, 2005) and other forms of maltreatment (Boynton, 2012; Chan & Nankervis, 2014; Wombles, 2014).<\/p>\n Despite my experience watching and coding research on FC, I sought out alternative points of view. One well-written and thoughful essay was posted by Patrick Dwyer.<\/p>\n \nMORE THOUGHTS ON RPM AND FC<\/a><\/p>\n June 17, 2020 Patrick Dwyer<\/p>\n I’ve decided to write this in order to essentially revisit a topic that I last addressed in a post a couple of years ago. This post, regarding the Rapid Prompting Method (RPM), has (based on number of views) apparently received a lot of traffic compared to other posts on this blog, no doubt because of the vital importance of protecting people’s right to communicate.<\/p>\n Being profoundly aware of the importance of the right to communicate, as well as fully cognizant of my own relative lack of expertise in this specific area,1 I’ve been reflecting on what I originally wrote. I’m not satisfied with what I wrote before and have decided to write a new post about RPM. Because it seems like the debate around RPM is closely linked to the shortcomings of Facilitated Communication (FC), I also thought I should cover FC as well.2<\/p>\n I’ve organized this new post around a series of statements regarding RPM and FC that I hope will strike most people as reasonable. <\/p>\n What are RPM and FC?<\/strong> First, FC: adherents of FC claim that at least some nonspeaking autistic people can type if their hand is held by a facilitator, who thereby grounds the individual and offers motor stability. Clearly, this technique carries with it a strong danger that the facilitator can (perhaps unconsciously) start moving around the autistic person’s hand and controlling what they type, and research suggests this is usually what is happening in FC.<\/p>\n RPM is newer. While practitioners in RPM (and FC, for that matter) may ultimately aim for the individual to graduate to independent communication, before this independence is achieved, the RPM practitioner will physically hold up a small number of response options, and later a board with letters that an individual could point to. While the RPM practitioner is holding the individual’s response options, and prompting them to answer, there would seem to be a similar danger that the RPM practitioner may end up controlling the communication. For this reason, some people are seriously concerned that RPM could actually be suppressing nonspeaking people’s right to communicate. However, there are cases in which RPM users have graduated to communicating independently, and some people fear that any measures to restrict access to RPM might end up silencing nonspeaking autistic people who could communicate with RPM.\n<\/p><\/blockquote>\n Dwyer’s post was the most balanced piece I located when trying to understand the FC debate. Dwyer’s text included links and citations, which led me to this research project that suggests FC might, in at least some cases, be productive. <\/p>\n \nEye-tracking reveals agency in assisted autistic communication<\/a><\/p>\n Vikram K. Jaswal, Allison Wayne & Hudson Golino <\/p>\n Scientific Reports volume 10, Article number: 7882 (2020)<\/p>\n About one-third of autistic people have limited ability to use speech. Some have learned to communicate by pointing to letters of the alphabet. But this method is controversial because it requires the assistance of another person—someone who holds a letterboard in front of users and so could theoretically cue them to point to particular letters. Indeed, some scientists have dismissed the possibility that any nonspeaking autistic person who communicates with assistance could be conveying their own thoughts. In the study reported here, we used head-mounted eye-tracking to investigate communicative agency in a sample of nine nonspeaking autistic letterboard users. We measured the speed and accuracy with which they looked at and pointed to letters as they responded to novel questions. Participants pointed to about one letter per second, rarely made spelling errors, and visually fixated most letters about half a second before pointing to them. Additionally, their response times reflected planning and production processes characteristic of fluent spelling in non-autistic typists. These findings render a cueing account of participants’ performance unlikely:<\/p>\n The speed, accuracy, timing, and visual fixation patterns suggest that participants pointed to letters they selected themselves, not letters they were directed to by the assistant.<\/strong><\/p>\n The blanket dismissal of assisted autistic communication is therefore unwarranted.\n<\/p><\/blockquote>\n There were only nine participants<\/strong> in the Jaswal sample, and the researchers note that their method doesn’t entirely preclude the possibility the autistic participant was physically or otherwise prompted by the assistant. In other words, the research suggests <\/strong><\/em>FC might be working for the test subjects, but research cannot yet rule out other forms of prompting by the facilitators. <\/p>\n I watched the documentary Deej <\/em>after reading the Jaswal paper. The documentary troubled me, but I struggle to explain why I felt the film was exploiting its subject. I realize my reaction to Deej <\/em>is subjective and I might be too distrustful of the motives behind such projects. Yet, I’m not alone. <\/p>\n \nDeej-a Vu: Documentary revisits facilitated communication pseudoscience<\/a><\/p>\n Craig A. Foster<\/p>\n First published: 09 August 2019<\/p>\n Deej<\/em><\/p>\n is a documentary about a young man named Deej who has autism with complex communication needs (i.e., nonverbal autism). To the uninitiated, Deej might look like a poignant story about people misperceiving Deej until he reveals the intelligence hidden inside him. The documentary uses Deej’s story to suggest that other people with complex communication needs are similarly misunderstood. In actuality, the documentary is misleading and concerning. Deej demonstrates his hidden intelligence via facilitated communication. The documentary does not mention the science that discredits facilitated communication or the harm that facilitated communication has enabled. In the present paper, I use the history of facilitated communication to examine Deej. I describe how the documentary promotes facilitated communication by encouraging improper forms of scientific reasoning.<\/p>\n Finally, I suggest that skepticism toward facilitated communication is necessary to ameliorate its harmful influence and to encourage genuine acceptance of people with complex communication needs.<\/strong>\n<\/p><\/blockquote>\n Though the publication is unfortunate (Journal of ABA<\/em>), the findings in the following paper are consistent with previous research. <\/p>\n\n
Facilitated Communication<\/a>
Position Statement<\/h3>\nRationale<\/h3>\n
Description of Facilitated Communication<\/h4>\n
Background<\/h4>\n
Systematic Reviews of FC<\/h4>\n
Before going further, I should briefly define FC and RPM for anyone who is unfamiliar with these techniques.<\/p>\nAbstract<\/h3>\n
Abstract<\/h3>\n