Imagine that you’re an individual with autism attending a session with your therapist who is inquiring about your living situation and goals, and any changes you would like implemented in your life, as it appears to him/her or others that something is causing you distress. Before you can respond, another staff person, calling himself a “speaking assistant” seals your mouth shut with duct tape.  This speaking assistant then sits beside you and responds in your stead.   He asserts: “I am not happy where I live and would like to move immediately.”  He also proclaims, “I would like to have a Public Guardian instead of my mother…and, also, I would like a ride to Boston to purchase a sex toy.” Your therapist, marveling at your expressive ability, thanks you for your valued input and assures you that your treatment team will indeed strive to expedite all these goals.

This bizarre-sounding scenario is not so far-removed from what occurs when community mental health providers subject nonverbal individuals with autism to facilitated communication (FC) or similar techniques such as the Rapid Prompting Method. In FC, for example, the facilitator holds or touches the individual’s hand, arm or shoulder thus providing as much cuing as necessary to produce typed messages whose true “author” is the facilitator him/herself. Unlike the duct tape scenario, the facilitator is well-intentioned, and does not deliberately replace the individual’s voice, but produces the messages subconsciously via the ideomotor or “Ouija Board” effect. The net effect is exactly the same i.e., someone substitutes their voice for that of another individual without that individual’s consent.  At my own community mental health center in Vermont where FC is heavily promoted by the relevant State Agency—the Department of Disabilities, Aging and Independent Living (DAIL)—statements similar to those mentioned above, have in fact, been produced via FC and accepted as the individual’s request.

The psychologist or other therapist treating a nonverbal individual with autism bears responsibility for ensuring that the therapeutic intervention is ethical and supported by science. The therapist must reckon with the lack of methodologically sound studies supporting the use of FC or RPM. In fact, numerous professional organizations have issued position statements opposing the use of FC or RPM as unethical.

For example, the Association for Science in Autism concluded: “Based on these and other studies conducted on the effectiveness of FC, it is not considered to have scientific evidence and is not an appropriate communication intervention for individuals with autism spectrum disorders. Further, FC has been shown to be harmful in certain instances in which it has led to false allegations of abuse against family members of users (Celiberti, 2010; Green, 1995; Green & Shane, 1994; Lilienfeld, 2007; Lilienfeld, et al 2014). Therefore, FC is an inappropriate intervention for individuals with autism spectrum disorders.”

 Similarly, the Association for Behavioral Analysis, International has issued the following statement: “It is the position of the Association for Behavior Analysis that FC is a discredited technique. Because of the absence of ample, objective, scientific evidence that FC is beneficial and that identifies the specific conditions under which it may be used with benefit, its use is unwarranted and unethical.”

 The American Psychological Association’s assessment of FC notes: “there is no scientifically demonstrated  support for its efficacy.”

 The American Academy of Child and Adolescent Psychiatry states: “Studies have repeatedly demonstrated that FC is not a scientifically valid technique for individuals with autism…  In particular, information obtained via (FC) should not be used to confirm or deny allegations of abuse or to make diagnostic or treatment decisions.”

 Likewise, other clinical professional organizations have issued statements opposing the use of FC. These organizations reached such conclusions following a thorough review of relevant studies. Scientific studies indicate the messages produced are not, in fact, those of the individual with autism.

When therapists take statements produced via FC at face value, harm is always done as the individual is invalidated when his/her ideas and emotions are replaced by another’s.  The specific harms may not be newsworthy in the case of the examples cited above, and do not rise to the level of situations that have been reported by the press such as those involving abuse allegations. However, these seemingly mundane harms are far more frequent and do have real adverse impacts on the individuals’ lives. For example, the patient who was removed from his home based on an FC report had to deal with a significant disruption to his life circumstances and routine. This led to further agitation and to staff requests to utilize antipsychotic medication to address the consequent FC-induced agitation.

Techniques such as FC and RPM are a blatant violation of individual civil rights and compound the tragedy of limited communication ability by substituting someone else’s statements for the affected individual’s voice. Unfortunately, FC and its variants continue to thrive, and its use continues to expand throughout the U.S. despite a plethora of research which has discredited it as pseudoscience.

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FC - Behind the Glass - Session 1

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Why do some autism experts fall for facilitated communication?