STORY: "The battle over a controversial method for autism communication," by James Elliot. published by the Atlantic on July 20, 2016.
SUB-HEADING: "A technique that claims to help people with the condition express themselves with the help of a "facilitator" was scientifically disproven in the '90s—so why hasn't it disappeared?"
GIST: "For Autism Awareness Month in April, Apple produced a video in which a young teen with autism uses an iPad that dictates what he types. Touching on-screen buttons, he expresses complex thoughts by assembling sentences from icons that represent words. Speech-assistive technology like this, which used to be prohibitively expensive, is invaluable for the many children and adults with autism who have trouble learning words and grammar, don’t understand social rules during conversations, or struggle to spontaneously use spoken language. But the video has come under some scrutiny—not because of the new technology, but because of the human help he had using it. In one brief sequence, the boy is shown typing into a device held by a woman, his “communication partner,” who gently pushes the keyboard back against his finger as he types. This pressure, which allegedly helps him to organize his sensory system and motor planning, is a hallmark of Rapid Prompting Method (RPM), what some experts argue is a form of “facilitated communication”—a technique that persists in spite of overwhelming evidence that discredits it. Such partners—alternatively called “facilitators,” among other terms—are not akin to translators, who merely take on valid means of communication and frame it into another, but are the means of communication itself. Whereas someone who speaks French or American sign language has alternative means of verifying their communication (such as in writing), a person with a condition that can affect communication, such as autism, may lack any other means of verifying that what is being communicated to the listener accurately reflects what the person is trying to say. Not only does this run the very real danger of providing incorrect services and supports to the person, stemming as they will from the facilitator’s judgment and not the person’s, mistaking the source can have real, profound consequences: Families have been torn apart by spurious accusations of abuse, including sexual abuse. Worse, such communication has been used to try to justify the abuse itself.........FC constitutes “immediate threats to the individual civil and human rights” of the person being facilitated.........When it first arrived in the United States, FC was seen as a breakthrough, a method of freeing children from the cages of their own bodies and revealing individuals with dynamic intelligence and literary skills, able to share piercing insights into their condition. Once it caught on in the popular imagination, science began its interrogation, and found the evidence for FC’s validity wanting. By 1994, the American Psychological Association (APA) declared that there was no scientific evidence proving that FC worked—and that it constituted “immediate threats to the individual civil and human rights” of the person being facilitated. One of the primary concerns, both scientific and ethical, was the issue of “authorship”: whether the thoughts being expressed truly arise from the facilitated, and not the facilitator. The APA was soon joined by a range of leading professional and scientific organizations, such as the American Speech-Language-Hearing Association and the American Academy of Pediatrics, and by the late ‘90s, facilitated-communication proponents were largely dismissed as faith-healers and charlatans at best, and predators at worst. (The controversy around the technique was even portrayed in a 1995 episode of the then-popular television procedural Law & Order.) Today, the developmental-disabilities professional community sees the facilitation-communication debate as settled; the American Association on Intellectual and Developmental Disability doesn’t even feel the need to state a position about it on their website, the organization’s CEO, Margaret Nygren, told me. By the early 2000s, she said, “there was widespread agreement in the scientific community that the facilitators, rather than the individual with the disability, were the source of communications in FC.” But, as the Apple video suggests, facilitated communication hasn’t disappeared. The practice retains a dedicated community of followers who have sought to prove its scientific validity as a legitimate speech-therapy technique, often using names such as rapid prompting method or “supported typing,” despite warnings by researchers such as James Todd of Eastern Michigan University and Jason Travers of the University of Kansas. And FC’s followers have found allies, such as certain staff members at the University of New Hampshire (which only recently transitioned away from the technique), the University of Northern Iowa, the Massachusetts Department of Elementary and Secondary Education, and the Vermont Department of Disabilities, Aging, and Independent Living. The FC community even continues to secure taxpayer dollars.........The unknowns of autism often move parents and families of autistic individuals in a swirl of powerful guilt, uncertainty, and fear. But that swirl also involves hope—hope that beneath a child’s autistic symptoms is a child yearning to communicate with the world. FC’s offer to fulfill that hope is what gives the practice its power, despite compelling scientific evidence against its ability to deliver. In practically every case of facilitated communication that I have seen or researched, one of the first things that nonverbal people express through facilitated communication is a profession of love and thanks for the parent’s tireless faith that there was a linguistically intact individual waiting for the proper means of expression. Facilitators themselves begin from the very assumption that this capability is not only there, but that their facilitation is the means to access not only the person’s communication but also their innate intelligence. There is substantial power behind the image of a child with autism liberated from a cone of perseveration and self-stimulation attending college and expressing complex, cogent sentences. The very idea that these children lack the ability to communicate is at odds with everything in which I and any educator or professional believes. The very first requirement in teaching such wonderful, complex people is the humility in knowing that even when an approach rewards the educator, it can hurt their charges, or their families, emotionally. It can be easy to lose site of the goal: independent communication arising from the individuals, and not from a person’s hopes for them."
The entire story can be found at:
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