In the past few years, newspapers in the U.S. featured human interest stories about a “new form of communicating” for individuals with disabilities. The stories claimed that non-speaking individuals with autism developed unexpected literacy skills by typing on a keyboard or other device with support from a communication assistant. These individuals, with a history of little or no functional spoken or written language skills, were, according to these articles, now giving advice on how to cope with the pandemic, taking college prep courses, publishing books, and producing movies.
While it is encouraging to see individuals with autism and developmental delays being recognised for their achievements when they are legitimate, this “new form of communicating,” often referred to as Rapid Prompting Method (RPM), is in actuality, a variant of Facilitated Communication (FC), a long-discredited technique used on individuals with severe communication difficulties. With FC, an assistant, called a facilitator, holds on to their client’s wrist, elbow, shoulder or other body part while typing on a letter board or other communication device. With RPM, the facilitator holds the letter board or device in the air while the client points a finger in the vicinity of the board, seemingly to spell out letters independently.
The sophisticated, sometimes poetic, written output, however, in both FC and RPM is wholly reliant on facilitator prompting and cuing. Ask the facilitator to stand out of visual and auditory range as their client types alone and the written output deteriorates significantly, often to the point of limited or no intelligibility. In contrast, existing evidence-based Augmentative and Alternative Communication methods and techniques allow individuals to interact with communication devices independently and without the interference of a facilitator.
In 2018, the American Speech-Language-Hearing Association (ASHA), released an update of their 1995 position statement opposing FC. In it, they identified alternate descriptors of the technique currently being used by proponents: assisted typing, Facilitated Communication Training, and Supported Typing. They also released a new position statement opposing Rapid Prompting Method and, again, identified alternate descriptors of the technique: Informative pointing, Letter Boarding, and Spelling to Communicate. There are, most likely, others not on this list. With all these terms meaning the exact same thing, it is no wonder that readers of the feel-good stories published in reputable newspapers may not understand that the individuals are being subjected to FC and RPM, and that it is highly likely (well above chance) that the FC-generated messages are the words of the facilitators and not the individuals being subjected to facilitation.
What bears mentioning is that there is overwhelming evidence that FC is not an evidence-based form of communication and had these reporters done their due diligence, they would have discovered this for themselves. The latest systematic review, completed in 2018, revealed no new evidence that FC produces independent communication. All preceding systematic reviews, starting in the mid-1990s, revealed the exact same thing. Most major health, education, and disability advocacy organisations have position statements in place strongly urging their members not to use the technique, citing concerns over facilitator control and potential harms caused by false allegations of abuse. Some, like the International Society for Augmentative and Alternative Communication, consider FC a human rights violation. Other organisations opposing FC include, but are not limited to, the American Psychological Association, American Academy of Pediatrics, Association for Behavior Analysis International, Association for Science in Autism, the American Association on Intellectual and Developmental Disabilities, and, in the UK, the National Institute for Health and Care Excellence.
A systematic review of RPM in 2019 showed there were no studies that met the evidence-based criteria for the review and no proof that RPM produces communications independent of facilitator control. So, while the efficacy of RPM cannot technically be ruled out, as in the case of FC, proponents have yet to produce reliable evidence that messages obtained using RPM are other than facilitator controlled. Because RPM shares significant characteristics with FC, namely facilitator influence and prompt dependency, increasingly, organisations opposing FC are adding RPM to their opposition statements.
It is baffling, then, why reporters consistently fail to mention (or, if mentioned, emphasise) these facts in their reporting. Except that, despite the overwhelming evidence discrediting FC and casting serious doubt on RPM, otherwise reputable institutes like Syracuse University and the University of Virginia heavily promote their use. Private organisations, like HALO, Growing Kids Therapy Center, and Rapid Prompting Method UK, market RPM and Spelling to Communicate as if they are proven techniques. The University of Virginia’s “Tribe” and the UK’s “Quiet Riot” claim to be advocacy groups and win sympathy with the general public but are made up of non-speaking individuals subjected to FC or one of its variants. Oberlin College and Whittier College, among others, have allowed students using FC as their primary form of communication, to graduate from their institutions (raising the question of who is actually earning the degrees). Reporters rely on institutes such as these to be the authority on reliable, evidence-based communication methods and, may or may not, have the critical thinking skills or the depth of knowledge regarding individuals with severe communication difficulties to understand that they are being duped.
But the dangers of spreading misinformation about FC and RPM do not stop with feel-good stories about individuals “finding their voice.” These stories add legitimacy to a discredited and harmful practice. Along with the opportunity costs for individuals subjected to facilitation which prevents them from accessing legitimate forms of communication, innocent people’s lives have been ruined as facilitators have typed out false allegations of abuse against the family members of their clients. Jose Cordero, Thal and Julian Wendrow, Robert and Julia Burns, John Pinnington, and countless others faced jail time and public humiliation as they defended themselves against these wrongful claims. Facilitators Anna Stubblefield and Martina Susanne Schweiger were both convicted of sexual assault for using FC as the sole form of consent. And, Gigi Jordan, mother of a child with autism, fed him an overdose of pills because, using FC, she believed he had been sexually assaulted and wanted to die.
It is not easy to be a critic of FC, RPM or their variants. People who dare to point out the flaws in the techniques receive the harshest type of accusations from proponents: that they are against people with disabilities. Perhaps this is what reporters fear as well. But, these are not “new forms of communicating” and every single controlled study of FC has failed to produce independent communications. Further, these studies have consistently and repeatedly documented facilitator control over the written messages.
Critics and journalists alike need to call out FC in whatever form it takes and urge proponents to produce reliable evidence to back up their claims or stop the practice. Reporting anything else lends credibility to these pseudoscientific practices and does a disservice to people who rely on established, evidence-based methods of communication.
These are the stories that deserve recognition and celebration—those told not by facilitators but by the individuals themselves. Anything less is unacceptable.