Jaswal & Akhtar (J&A) examine the apparent lack of social motivation in people with autism spectrum disorder and present first-person testimonies in support of their hypotheses. Nevertheless, because several of the people quoted used Facilitated Communication (FC) or the Rapid Prompting Method (RPM), the views presented cannot be assumed to be their own. Because J&A present these quotes as evidence, the credibility of their arguments is seriously compromised. In addition, these problematic techniques are not acknowledged, and as a result, their article is lacking in transparency.
FC, which typically involves a “facilitator” providing physical support at the hand, arm, back, or other body part of a person with communication disability as they type on a keyboard, has been thoroughly discredited. Controlled trials and systematic reviews of FC (see Mostert Reference Mostert2001; Reference Mostert2010; Schlosser et al. Reference Schlosser, Balandin, Hemsley, Iacono, Probst and von Tetzchner2014) consistently show that the facilitator influences the content of the message typed by means of the well-documented ideomotor (“ouija-board”) effect (Lilienfeld et al. Reference Lilienfeld, Marshall, Todd and Shane2014).
RPM, which typically involves an “instructor” holding and moving an alphabet board while the person with communication disability points at the board, has been likened to FC (Tostanoski et al. Reference Tostanoski, Lang, Raulston, Carnett and Davis2014). RPM proponents have often avoided scrutiny by discouraging scientific research (Tostanoski et al. Reference Tostanoski, Lang, Raulston, Carnett and Davis2014), and there is no evidence that RPM is a valid form of communication. A correlational study by Chen et al. (Reference Chen, Yoder, Ganzel, Goodwin and Belmonte2012) is often cited as supporting RPM, but it did not test authorship of the messages and instead showed evidence of prompt dependency (Lang et al. Reference Lang, Harbison, Travers and Todd2014).
Given the (a) absence of evidence supporting FC or RPM, (b) substantial scientific evidence against FC, (c) marked similarities between FC and RPM, and (d) widespread acknowledgment of the harms of FC, including false allegations of sexual abuse, at least 19 professional, governmental, and disability advocacy organizations worldwide have issued statements against these techniques (Behavior Analysis Association of Michigan 2018). The American Speech-Language-Hearing Association (ASHA 2018a; 2018b) position statements on FC and RPM, respectively, assert that information obtained through the use of these techniques should not be considered (FC) or assumed to be (RPM) the communication of the person with a disability.
In total, J&A offer 40 quotes from people with autism in support of their arguments.Footnote 1 In many instances, J&A provide attributions for the cited quotes but do not outline the previously reported language skills or communication methods and techniques of the quoted individuals. Twenty-three quotes appear to be from people with autism who use speech to communicate. Many of the remaining 17 quotes appear to be from people with autism who do not use speech to communicate but are quoted via FC or RPM, as illustrated in the following examples:
1. Six quotes attributed to Ido Kedar (Reference Kedar2012) come from Ido in Autismland. In that book's Introduction, Ido's mother indicated that he first showed expressive language when she began using FC with him and that he later went on to use RPM, receiving instruction from its inventor, Soma Mukhopadhyay (Kedar Reference Kedar2012). She also reported that Ido wrote the book with his RPM letterboard.
2. The quote attributed to Barb Rentenbach derives from a book co-authored with her FC facilitator (Rentenbach & Prislovsky Reference Rentenbach and Prislovsky2012). An author's note reveals that the book was written with FC and includes a photo of her receiving hand-over-hand facilitation.
3. A single quote attributed to Sue Rubin comes from her chapter in a book edited by Douglas Biklen, the primary promoter of FC in the United States (Rubin Reference Rubin and Biklen2005). Biklen does not indicate how Rubin produced her chapter, but there is other contemporaneous evidence of her language ability. In the 2004 documentary Autism Is a World (Wurzburg Reference Wurzburg2004), in which Rubin appeared, all of her dialogue originated from (a) hand-over-hand FC, (b) typing on a keyboard held in the air by someone else, or (c) previously typed messages played on screen by a text-reading machine. The film contains no examples of her typing independently on a fixed keyboard.
4. Two quotes attributed to Naoki Higashida (Reference Higashida2013) originate from the English translation of his book The Reason I Jump. Based on readings of the book in both English and Japanese, as well as observations of Higashida at live and videotaped appearances, Fein and Kamio (Reference Fein and Kamio2014) concluded that he used a form of FC and that the book should not be taken as his words.
By our count, the four aforementioned individuals provide 59% of the quotes attributed to people who do not use speech to communicate and 25% of the quotes overall. J&A also cite these sources frequently without quoting them directly. Several quotations used by J&A were obtained by FC and RPM, so they should not be assumed to be the statements of people with autism (ASHA 2018a; 2018b). Given the strength of scientific evidence against FC, and the scientific questions remaining about the authorship of messages delivered by RPM, such quotations cannot legitimately be used to support J&A's arguments about social motivation in people with autism. In addition, J&A's failure to report the methods used to collect these quotes is problematic.
We encourage careful consideration of the reporting standards and methodologies used in research involving people with autism. Researchers should listen to, include, and respect the voices of people with autism, and not use discredited techniques such as FC and RPM, which risk putting words into their mouths.
Authors who cite the words of people with autism as primary or secondary data sources have a scientific and ethical obligation to ensure that the statements they analyze or quote are those of the participants and have been obtained using validated communication methods. Scholars also have an ethical responsibility to acknowledge when FC, RPM, or any other facilitator-dependent technique has been used in the production of messages reported in research.
Jaswal & Akhtar (J&A) examine the apparent lack of social motivation in people with autism spectrum disorder and present first-person testimonies in support of their hypotheses. Nevertheless, because several of the people quoted used Facilitated Communication (FC) or the Rapid Prompting Method (RPM), the views presented cannot be assumed to be their own. Because J&A present these quotes as evidence, the credibility of their arguments is seriously compromised. In addition, these problematic techniques are not acknowledged, and as a result, their article is lacking in transparency.
FC, which typically involves a “facilitator” providing physical support at the hand, arm, back, or other body part of a person with communication disability as they type on a keyboard, has been thoroughly discredited. Controlled trials and systematic reviews of FC (see Mostert Reference Mostert2001; Reference Mostert2010; Schlosser et al. Reference Schlosser, Balandin, Hemsley, Iacono, Probst and von Tetzchner2014) consistently show that the facilitator influences the content of the message typed by means of the well-documented ideomotor (“ouija-board”) effect (Lilienfeld et al. Reference Lilienfeld, Marshall, Todd and Shane2014).
RPM, which typically involves an “instructor” holding and moving an alphabet board while the person with communication disability points at the board, has been likened to FC (Tostanoski et al. Reference Tostanoski, Lang, Raulston, Carnett and Davis2014). RPM proponents have often avoided scrutiny by discouraging scientific research (Tostanoski et al. Reference Tostanoski, Lang, Raulston, Carnett and Davis2014), and there is no evidence that RPM is a valid form of communication. A correlational study by Chen et al. (Reference Chen, Yoder, Ganzel, Goodwin and Belmonte2012) is often cited as supporting RPM, but it did not test authorship of the messages and instead showed evidence of prompt dependency (Lang et al. Reference Lang, Harbison, Travers and Todd2014).
Given the (a) absence of evidence supporting FC or RPM, (b) substantial scientific evidence against FC, (c) marked similarities between FC and RPM, and (d) widespread acknowledgment of the harms of FC, including false allegations of sexual abuse, at least 19 professional, governmental, and disability advocacy organizations worldwide have issued statements against these techniques (Behavior Analysis Association of Michigan 2018). The American Speech-Language-Hearing Association (ASHA 2018a; 2018b) position statements on FC and RPM, respectively, assert that information obtained through the use of these techniques should not be considered (FC) or assumed to be (RPM) the communication of the person with a disability.
In total, J&A offer 40 quotes from people with autism in support of their arguments.Footnote 1 In many instances, J&A provide attributions for the cited quotes but do not outline the previously reported language skills or communication methods and techniques of the quoted individuals. Twenty-three quotes appear to be from people with autism who use speech to communicate. Many of the remaining 17 quotes appear to be from people with autism who do not use speech to communicate but are quoted via FC or RPM, as illustrated in the following examples:
1. Six quotes attributed to Ido Kedar (Reference Kedar2012) come from Ido in Autismland. In that book's Introduction, Ido's mother indicated that he first showed expressive language when she began using FC with him and that he later went on to use RPM, receiving instruction from its inventor, Soma Mukhopadhyay (Kedar Reference Kedar2012). She also reported that Ido wrote the book with his RPM letterboard.
2. The quote attributed to Barb Rentenbach derives from a book co-authored with her FC facilitator (Rentenbach & Prislovsky Reference Rentenbach and Prislovsky2012). An author's note reveals that the book was written with FC and includes a photo of her receiving hand-over-hand facilitation.
3. A single quote attributed to Sue Rubin comes from her chapter in a book edited by Douglas Biklen, the primary promoter of FC in the United States (Rubin Reference Rubin and Biklen2005). Biklen does not indicate how Rubin produced her chapter, but there is other contemporaneous evidence of her language ability. In the 2004 documentary Autism Is a World (Wurzburg Reference Wurzburg2004), in which Rubin appeared, all of her dialogue originated from (a) hand-over-hand FC, (b) typing on a keyboard held in the air by someone else, or (c) previously typed messages played on screen by a text-reading machine. The film contains no examples of her typing independently on a fixed keyboard.
4. Two quotes attributed to Naoki Higashida (Reference Higashida2013) originate from the English translation of his book The Reason I Jump. Based on readings of the book in both English and Japanese, as well as observations of Higashida at live and videotaped appearances, Fein and Kamio (Reference Fein and Kamio2014) concluded that he used a form of FC and that the book should not be taken as his words.
By our count, the four aforementioned individuals provide 59% of the quotes attributed to people who do not use speech to communicate and 25% of the quotes overall. J&A also cite these sources frequently without quoting them directly. Several quotations used by J&A were obtained by FC and RPM, so they should not be assumed to be the statements of people with autism (ASHA 2018a; 2018b). Given the strength of scientific evidence against FC, and the scientific questions remaining about the authorship of messages delivered by RPM, such quotations cannot legitimately be used to support J&A's arguments about social motivation in people with autism. In addition, J&A's failure to report the methods used to collect these quotes is problematic.
We encourage careful consideration of the reporting standards and methodologies used in research involving people with autism. Researchers should listen to, include, and respect the voices of people with autism, and not use discredited techniques such as FC and RPM, which risk putting words into their mouths.
Authors who cite the words of people with autism as primary or secondary data sources have a scientific and ethical obligation to ensure that the statements they analyze or quote are those of the participants and have been obtained using validated communication methods. Scholars also have an ethical responsibility to acknowledge when FC, RPM, or any other facilitator-dependent technique has been used in the production of messages reported in research.