In support of OTs against FC/S2C/RPM
In today’s blog post, I focus on the role that Occupational Therapists can play in supporting the adoption of Assisted Technologies (AT), including Augmentative Alternative Communication (AAC) over Facilitated Communication (FC).
Image by ThisisEngineering RAEng
This post is inspired by the recent publication of an article called “Using occupational therapy principles and practice to support independent message generation by individuals using AAC instead of facilitated communication” by Loren F. McMahon, Howard C. Shane, and Ralf W. Schlosser and published in the journal Augmentative and Alternative Communication.
As McMahon, Shane and Schlosser point out in their article, Occupational Therapists (OTs) are positioned to evaluate, analyze, and diagnose movement challenges in their clients—particularly in the upper extremities—and suggest adaptations and supports to optimize use of evidence-based AT and AAC.
Despite this, we, on this website, are aware of (some) OTs promoting FC, seemingly, for two main reasons:
to advance the (unsubstantiated) idea that communication difficulties in autism are not due to social and language comprehension difficulties, but to a motor planning problem, and,
to circumvent the American Speech Language Hearing Association (ASHA’s) position statement against FC which has been in place since 1995, but was renewed in 2018.
To date, organized OT groups have been relatively silent on the issue of FC and their role in it.
While researching the topic, McMahon, Shane and Schlosser found only two articles from OT journals, Rehabilitative Medicine journals, and other sources that met their search criteria (a search that included the words “facilitated communication,” “FC,” “assisted typing,” “supported typing,” “spelling 2 communicate,” “spelling to communicate”).
Notably, the authors omitted reference to Rapid Prompting Method (RPM), which includes Spelling to Communicate (S2C) and Informative Pointing (e.g., FC variants where a facilitator holds a letter board in the air for their client). Both ASHA and the American Association on Intellectual and Developmental Disabilities (AAIDD) added RPM and its variants to their opposition statements in 2018 and 2019 respectively. We know of at least one case study, published by Autism Open Access in support of OT and RPM.
We are also aware that FC featured prominently in Politics of Occupation-Centred Practice, a book published in 2012 that, as the book cover asserts, “addresses the cultural aspects of occupational identity and draws out the implications for practice, moving beyond the clinical environment to include the occupational therapists’s work in the wider community.” Two chapters (Disability, Sexuality and Intimacy, and Participation, Time, Effort and Speech Disability Justice) promote FC as if it is a legitimate form of AAC (which it is not) and, further, extend the role of the facilitators (and by extension, OTs) to include aiding facilitated individuals in intimate, sexual relationships.
I’ve written to several OT associations asking for information regarding OTs and the promotion of FC/S2C/RPM and have, largely, been ignored. One group, the World Federation of Occupational Therapists (WFOT) sent this reply in 2022:
The World Federation of Occupational Therapists (WFOT) has not published a specific position in relation to facilitated communication or other similar communication methods. WFOT does not however endorse the use of interventions that are not supported by evidence.
WFOT advocates for the use of best available evidence to inform occupational therapy practice (Guiding Principles for the use of Evidence in Occupational therapy). The application of evidence to ensure best practice is one of six competency areas in the 'WFOT Minimum Standards for the Education of Occupational Therapists' that are expected to be met by all graduates of occupational therapy educational programmes worldwide for approval by the Federation.
AOTA Occupational Therapy Practice Framework (AOTA, 2023)
In their article, McMahon, Shane and Schlosser, likewise, provide a solid argument for OTs versed in the American Occupational Association’s (AOTA) “Occupational Therapy Practice Framework” not to adopt FC.
In fact, they urge OTs to take a more active role in efforts to educate their clients (and client support teams) about the many options available for increased support, control, and independence through appropriate feature-matching when selecting AT and AAC systems. They posit that a systematic approach, including assessments that address the client’s motor, cognitive, physical, emotional, and sensory-based barriers to task independence, should help providers develop treatment plans that decrease reliance on others and increase autonomy for their clients. This approach also provides the support teams with opportunities to empirically assess the viability of the (initial) plans and make modifications for their clients where necessary.
OTs dedicated to evidence-based practices understand the need to reduce or eliminate facilitator influence and control over letter-selection activities. As stated in the article:
Manipulating a patient’s voice and their ability to independently author a message violates their autonomy.
The goal, then, for AT and AAC should be to empower individuals and increase their autonomy, not to foster a dependence on the facilitator(s) for physical, visual, or auditory cues.
As suggested by McMahon, Shane and Schlosser, OTs may employ the following to ensure a client is matched to the optimum AT or AAC system:
Use the Functional Independence Measure (FIM) to determine a client’s ability to safely (and independently) complete tasks on their own.
Suggest modifications to tasks or equipment to increase independence and reduce or eliminate the need for a “standby” assistant.
Ensure proper positioning of the device and postural stability of the client to improve motor performance.
Provide arm support (devices) to improve upper extremity motor control, reduce spasticity, and minimize fatigue and compensation.
Provide wearable supports (e.g., finger splints or digit-isolation gloves) that enable clients to reach toward a target without assistance.
Identify and suggest alternative access tools (e.g., eye gaze systems, switch scanning, head tracking) when upper extremity movement is a barrier.
Identify multiple switch sites for clients to increase efficiency and minimize fatigue.
Often, AT and AAC systems cannot compete with the seeming rapidity and ease of facilitator-generated messaging. However, as the authors note, hands-on support “can affect individual communication through facilitator bias (e.g., shifting, reflexive movement when hearing a correct prompt, turning the board in the direction of the correct choice)” even when facilitators believe they are not cueing their clients. (See also An FC Primer)
In addition, proponents of FC ignore or downplay available AT and AAC systems and/or, in an anti-science sentiment, reject advice from experts who point out the failings of FC, namely that the prompting and hands-on support integral to making FC “work” cannot support patient independence (whether the facilitator holds onto their client or controls access to a letter board, keyboard, or stencil held in the air).
Stephen Hawking visits Stockholm on August 24, 2015 in conjunction with a public lecture on black holes and participation in a historic conference on Hawking Radiation. (Frankie Fouganthin, 2015)
The goal of AT and AAC is to support an individual’s ability to communicate independently, not replace their voice with that of a facilitator. As Katharine Beals points out in her book, Students with Autism: How to Improve Language, Literacy, and Academic Success:
At the same time, as the troubling story of FC reminds us, the child’s aides and AAC partners should be vigilant about whether they themselves might be unwittingly influencing his messages—especially those who spend the most time with him and who, in a sometimes intense desire to be helpful and foster progress, might be tempted, however unconsciously and unintentionally, to lead him along. (p. 208)
As FC seems to be enjoying a resurgence (at least in the popular press) under the guise of “Rapid Prompting Method” and “Spelling to Communicate,” I am glad to see experts in OT, AT, and AAC formally speaking out against the use of unsubstantiated and, indeed, discredited techniques such as FC.
We know from the past 30+ years, the FC/S2C/RPM community is incapable of regulating itself. Despite calls for reliably controlled testing to rule in or rule out facilitator control during the letter selection process, these groups have failed to comply. Equally, they have failed to provide standardized licensing protocols for these techniques and have ignored opposition statements from many professional organizations. (See Opposition Statements).
In lieu of reliably controlled (e.g., double-blind) testing, it seems that OTs employing systematic and evidence-based assessment and treatment options for their clients might be another stop-gap measure providers can employ to ensure their clients steer clear of facilitator-dependent techniques like FC/S2C/RPM and are, instead, matched with appropriate AT and AAC systems.
However, I’d suggest that, if groups like the WFOT and AOTA are serious about promoting evidence-based practices over pseudoscience, then the leaders in those groups should take an assertive, not passive role in opposing FC/S2C/RPM.
Let’s not wait another 30 years before these groups have formalized statements opposing its use.