Netflix's new top documentary 'Tell Them You Love Me' highlights a misleading promise

Original Article:

Source: Link

My first encounter with the method known as “facilitated communication” (FC) dates back to 1990, at the International Society for Augmentative and Alternative Communication Conference held in Stockholm. During that event, I attended a presentation by Rosemary Crossley of Australia, the inventor of FC. She claimed that hidden language, literacy and cognitive skills among individuals who are nonspeaking could be unveiled using a new strategy. And she described the process: using a facilitator supporting the hand or arm of a nonspeaking individual to construct a message by pointing to letters on an alphabet display or keyboard. I was immediately skeptical. But as the talk concluded, I figured, ‘What harm can it do?’ Given my extensive experience at Boston Children’s Hospital, where I had established the first clinic in the country devoted exclusively to developing and applying a variety of augmentative and alternative communication (AAC) strategies for children and adults who used limited or no speech, I was immediately skeptical. But as the talk concluded, I figured, “What harm can it do?” Netflix’s new documentary “Tell Them You Love Me” sadly answers that question. The film, which delves into complex themes of race, disability and communication in the context of sexual exploitation, quickly captivated audiences. For years, FC has sparked debate over its bold but I would argue unproven assertions of unlocking hidden linguistic and cognitive abilities among individuals with significant developmental disabilities. Despite the overwhelming scientific evidence against the method, its persistence remains. Numerous established professional organizations such as the American Academy of Pediatrics and the American Speech-Language-Hearing Association uniformly reject FC, yet it continues to have enthusiastic supporters. Dr. Howard Shane. Business Wire via AP Soon after the Stockholm conference, I was recruited by a prosecutor to determine the authorship of messages generated using FC in a case regarding allegations of sexual abuse. I was tasked with developing a method to identify who really generated the messages in question: the individual being facilitated, or the facilitator who was in continuous contact with their body as the messages were typed. I devised and administered a series of procedures in which neither the facilitator nor the person being facilitated were aware of what the other was shown. The findings left no doubt in my mind that the facilitator authored every response, and in turn was responsible for making false allegations of abuse. After publishing the results of this investigation, I was asked to participate in many more cases over the next three decades where teachers and family members were falsely accused of sexual misconduct. In these legal cases, my testing found that it was the facilitator and never the individual being facilitated who authored all messages. Sadly, dozens of similar cases involving FC took place in courtrooms across the country. Netflix’s hit documentary details one of these legal cases. I believe the driving forces behind FC’s continued popularity are multifaceted. On the one hand, there are clinicians and educators who ardently promote FC even though it lacks empirical support. Their unwavering belief in its efficacy likely stems from a genuine desire to help individuals with disabilities communicate, but does not reflect evidence-based practices. As Janyce Boynton, a former facilitator, asserts in her article “Facilitated Communication — What Harm It Can Do: Confessions of a Former Facilitator,” a well-meaning facilitator can be completely unaware that they are authoring facilitated encounters. In 1995, I was part of a research team that proved that facilitators could be easily created. Initially, study participants were informed that a promising new communication method that required they “facilitate” was being explored. After viewing a short training video on how to facilitate and watching the initial positive footage taken from the PBS “Frontline” documentary “Prisoners of Silence,” they met and went on to facilitate answers to a series of questions that only they — and not the actor pretending to be nonspeaking — knew. This experiment suggests that what was at play was the ideomotor effect, a psychological phenomenon often used to explain the mystery behind the Ouija board. On the other hand, families often cling to FC because it offers a semblance of normalcy. The illusion that their children can express themselves independently becomes a powerful motivator. The litany of sophisticated messages often created using FC likely feel compelling because they align with the value our society places on cognitive and behavioral norms rather than accepting individuals with disabilities and providing them with appropriate accommodations. In essence, this is an understandable clash between evidence, deeply held convictions, societal norms and hope. The illusion that their children can express themselves independently becomes a powerful motivator. At the end of “Tell Them You Love Me,” the mother of a man diagnosed with cerebral palsy states: “Just embrace him. Just love him for who he is.” As a clinician aware of the plethora of existing augmentative and alternative communication methods, the acceptance of an individual and their disability is a vital part of identifying appropriate accommodations for authentic communication. For decades, I have asked what I consider to be an obvious and essential question: Why aren’t individuals who use FC routinely given the opportunity to use existing and well-established assistive technology strategies that would increase their independence and eliminate the relentless question of authorship? These independent means of creating messages include a wide range of proven clinical options such as specialized keyboards, software programs that only require a single, controlled movement like a head nod or eye blink to spell words, or advanced technologies such as eye-typing, which allows spelling by just looking at letters on a screen. In hindsight, “What harm can FC do?” feels premature and grossly inaccurate.