The Battle Over a Controversial Method for Autism Communication

July 21, 2016

By: James Elliott

Source: theatlantic.com

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?

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.

Facilitated communication—often referred to as FC in the media and in scientific literature—bills itself as a way to allow individuals with autism, intellectual disability, or a condition like cerebral palsy to communicate by means of a “facilitator.” Facilitators provide pressure to the hand, wrist, or arm, guiding the individual to letters, words, or pictures—typically on a keyboard, smartphone, or tablet. Whereas a prompt is an accepted educational technique to initiate an action (as distinct from “hand-over-hand,” which is used to teach the action itself outside an attempt to communicate), facilitation is typically provided throughout the communication process.

FC constitutes “immediate threats to the individual civil and human rights” of the person being facilitated.

Facilitated communication was in the headlines earlier this year when Anna Stubblefield, a former chair of the philosophy department at Rutgers University in New Jersey and fervent facilitated-communication advocate, was charged and convicted with sexually assaulting a man with severe cerebral palsy while acting as his facilitator. Stubblefield believed that she was in a deep, loving relationship with a man who could communicate only through her assistance but failed to convince the jury that the “messages” exchanged between them were anything more than creations of her imagination.
Emerging in the 1990s, facilitated communication gained popularity and legitimacy at Syracuse University’s Facilitated Communication Institute, now known as the Institute on Communication and Inclusion, housed within the university’s School of Education. Douglas Biklen, a professor emeritus at Syracuse, was exposed to the technique by Rosemary Crossley, an educator from Australia, where FC had gained traction in the 1970s. 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.”