Stolen Voices: Facilitated Communication Devalues Autism

Several years ago, a mother from the northeast region of the United States contacted me inquiring about helping her nonspeaking adolescent autistic son communicate. I listened to her description and suggested that her son could potentially be a candidate for an augmentative communication device. I teach a graduate course in Augmentative Alternative Communication (AAC) at the Vanderbilt University School of Medicine, and the technology available to use computers or tablets to communicate is getting better every year so I was optimistic that her son could find ways to support his communication.

AAC utilizes technology to help people whose speech is otherwise unintelligible. As an example, Stephen Hawking, a Nobel Prize-winning physicist, learned to use a computer to speak for him when Amyotrophic Lateral Sclerosis (ALS) impaired his ability to speak in the usual way. Children are also taught to use AAC when verbal communication is problematic. AAC instruction involves teaching a child to use a tablet or computer to produce messages they author, and AAC can empower autistic people to communicate, so I was hoping to connect this family with support services. I recommended that she contact local clinicians with expertise and specialized training in teaching people with communication challenges how to use computerized devices or tablets.

Several weeks later, she contacted me once again and happily reported that, unbeknownst to her, her son could read quite well and could write fairly complex stories with correct spelling and grammar. She also told me he could complete math problems correctly at near-grade level. After discussing the details of the augmentative services with her, it became clear that her clinician was using a controversial form of “facilitated” augmentative communication, wherein the professional was holding her son’s hand over a keyboard to guide keyboard strokes so he could write sentences and answer math questions as the clinician helped him select and push the keys. An important question in this situation is whether message authorship is authentically the autistic person’s—or that of the “facilitator.”

After all, it is a violation of fundamental human rights for someone else to steal another person’s voice, even when a facilitator does so out of an altruistic motivation to “unlock” hidden potential—at least from a "neurotypical" definition of "potential." Because of this, it is crucial that message origin and authorship be clearly established as it is possible that the “facilitator” is consciously or unconsciously the actual source of the messages. Every person has an absolute right to their own voice and AAC should be provided with the goal of allowing users to speak for themselves.

Because of this, I discussed with the mother some simple common-sense methods for ensuring that it was her son—and not his clinician—who was actually authoring the messages. Common-sense suggestions included making sure that the clinician was not able to see the keyboard while facilitating or by having her son read the questions from a piece of paper or screen without allowing the facilitator to see them. The latter approach would allow the facilitator to continue moving her son's hand over the keyboard while also permitting him to answer questions or carry on a conversation while using AAC, all the while ensuring that the facilitator is not authoring the responses. I even suggested that he answer exactly the same math questions he had before but without the facilitator seeing the questions.

But his mother became quite upset with me for even raising the possibility that the clinician—and not her son—could have been the messages' author. I got the sense that any questions about whether her son could read and write—and do math—was viewed as a denial of his abilities and capabilities and should not be tested, or even questioned.

After she hung up, I reflected on the strong motivation that keeps driving “facilitated communication” and related forms of augmentative communication that are controversial—e.g., rapid prompting, supported spelling, and spelling to communicate. Facilitated communication has been around for decades and all fair tests of authorship have shown that the clinician (or any facilitator)—and not the autistic person—is writing the message. These results have led to near-universal discrediting of “facilitated” forms of communication by a broad range of professional organizations and advocacy groups such as the American Speech Language Hearing Association [1], the International Society of Augmentative and Alternative Communication [2], and the American Academy of Child and Adolescent Psychiatry [3]. However, as my own experience in this case illustrates, there remains a powerful motivation for families to adopt FC and related approaches so that an autistic person can fulfill their true "potential” and use FC to "show what they know."

But I fundamentally disagree with the underlying premise that the “value” of an autistic person somehow increases when we “discover” that they can read and write or solve math problems. Let’s assume for the sake of argument that it was proven to this mother (and everyone else) beyond any doubt that her son’s facilitated messages were in fact authored by the clinician and not him. Would that make her son any less “human" with a unique identity and "value" as a person? Why should autistic people risk having their voices stolen simply for the sake of conforming with societal “norms" for intelligence and achievement? And what does it say about a clinician who would wittingly (or unwittingly) presume to speak for the autistic person? It is noteworthy that a litany of horrific consequences can arise from stolen voices, such as children being taken away from their families based on facilitator-generated accusations of child abuse that were later disproven. [4][5] There has also been at least one case in which FC was falsely used to confirm "consent" for a romantic relationship. [6] It should be obvious that confirming message authorship for consent is absolutely crucial.

In addition to these obvious transgressions arising from stolen voices, autistic people should never be judged according to their ability to read or write or answer math problems. The neurodiversity movement has rightly criticized the long-standing devaluing and outright oppression of autistic people, and there has been condemnation of efforts to impose “neurotypical” values, abilities, and expectations on neurodiverse people.[7] At a fundamental level, what could be more arrogant and dehumanizing than to steal another person’s voice via FC in order to prove "intelligence" or otherwise perform on demand? Moreover, it is crucial that the field of augmentative communication adopt universal practices to ensure that message authorship is, in fact, the sole property of the autistic person. This starts with a universal premise that every person has a right to their own voice, and that confirming message authorship is a core element of that right that merits explicit protections.