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Syracuse, Apple, and Autism Pseudoscience

Behavior & Belief

Stuart Vyse

April 28, 2016

child works at keyboard

Many people are familiar with facilitated communication (FC), the thoroughly debunked but remarkably resilient treatment used with autistic children.1 A “facilitator” holds the hand or arm of the purported communicator who types on a keyboard. Research shows that FC is a kind of Ouija board phenomenon in which the facilitator unwittingly types for the autistic person. Numerous studies provide overwhelming evidence that FC does not work.2 The facilitator—not the nonverbal individual—is the true author of the typing. Nonetheless, FC continues to be widely used, sometimes with tragic consequences.

Daily Orange logo

FC Controversy at Syracuse University

Recently a new controversy about FC broke out on the campus of Syracuse University, spurred by an exposé and an editorial in The Daily Orange student newspaper.

In the 1990s, the primary promoter of FC in the United States was Douglas Biklen, professor of education at Syracuse. After learning about the technique on a trip to Australia, he returned to the United States and organized conferences on FC. In 1992, Biklen founded the Facilitated Communication Institute at Syracuse, but by the early 1990s controlled studies began to reveal the truth about FC. An influential PBS Frontline documentary, “Prisoners of Silence,” exposed the lack of evidence behind the method, and professional organizations, including the American Psychological Association, the American Academy of Child and Adolescent Psychiatry, and the American Speech-Language-Hearing Association, issued policy statements against the use of FC.3

But FC never went away. Some progress in the right direction has been made. For example, the University of New Hampshire Institute on Disability, which used to offer training in FC, has recently discontinued all FC programming. Syracuse has remained steadfast in its support of the discredited treatment; however, in 2002, the university’s Communication Sciences and Disorders Department left the School of Education, effectively separating itself from Biklen’s program. In 2010, the Facilitated Communication Institute changed its name to the Institute on Communication and Inclusion.

In the past year, Slate and the New York Times published stories about the case of the Rutgers University philosophy professor, Anna Stubblefield, who was convicted of the sexual assault of a thirty-three-year-old nonverbal man with cerebral palsy. Stubblefield said she and the man were in love and that he had communicated his consent to sex using—you guessed it—FC. Despite an obvious conflict of interest, Stubblefield herself was the facilitator.

Now the Syracuse University student newspaper, The Daily Orange, has blasted FC and the Institute on Communication and Inclusion in a lengthy article and an editorial. The April 11 article written by Assistant News Editor Michael Burke provides a history of FC—at Syracuse and elsewhere—and includes comments from researchers who condemn the technique. The article also recounts several cases of false claims of sexual abuse that have been made through FC over the years. These cases were frequently dismissed on grounds that the typed communications could not be validated, but the legal process often took months or years to complete. In the meantime, parents who were falsely accused were forced to leave their families until the cases were resolved. Some parents lost custody of their children, and at least one teaching career was ruined.4

The Daily Orange editorial board cited the Stubblefield case and said it was shameful for Syracuse to promote FC. They urged the university to give up the practice:

It is inexcusable and equal-parts embarrassing for Syracuse University as a research institution to stand behind facilitated communication (FC) despite it being a potentially life-destroying practice that has been empirically debunked.

The Daily Orange editorial board, April 11, 2016

In a letter published in the same issue of The Daily Orange, a group of faculty and staff defended FC and the Institute for Communication and Inclusion. They described the work of the institute as “civil and human rights work” and connected the criticisms of FC to the historic mistreatment and institutionalization of people who lack language skills. Later in the week, additional letters appeared, one from a professor of Public Health and Anthropology that criticized the institute’s defenders and another by a doctoral student in disability studies who supported FC.

For those who have loved ones who are nonverbal, the promise of fluency through facilitation is enormously attractive. As a result, it can be very difficult to get people to give up FC. But, if there is a positive side to the tragic case of Anna Stubblefield and her victim, it is that a spotlight has been thrown on the epicenter of this pseudoscientific treatment. As Michael Burke reported in his article, Anna Stubblefield was trained in FC at Syracuse University.

Apple Computer, FC, and Rapid Prompting Method

April is Autism Acceptance Month, and as it turns out it is the occasion for Apple Inc. to align itself with pseudoscience. Autism acceptance sounds like an admirable goal, and in many ways it is. Autism Acceptance Month is a project of the Autistic Self Advocacy Network (ASAN), which is part of—and arguably the largest force behind—the neurodiversity movement. What is neurodiversity? A 2011 National Symposium on Neurodiversity defined the term this way:

Neurodiversity is a concept and social movement that advocates for viewing autism as a variation of human wiring, rather than a disease. As such, neurodiversity activists reject the idea that autism should be cured, advocating instead for celebrating autistic forms of communication and self-expression, and for promoting support systems that allow autistic people to live as autistic people. (National Symposium on Neurodiversity website)

ASAN’s motto “Nothing About Us Without Us” means that autistic people should be involved in the decisions that affect their lives. ASAN also advocates for “identity first” descriptions. In the past, parents and professionals preferred the phrase “people with autism” in an effort to avoid defining people by their diagnoses. A person with autism was a person first. But ASAN has turned that view around in an effort to embrace the label. Supporters of this approach want to be called autistic people or autistics “the same way one refers to ‘Muslims,’ ‘African-Americans,’ ‘Lesbian/Gay/Bisexual/Transgender/Queer,’ ‘Chinese,’ ‘gifted,’ ‘athletic,’ or ‘Jewish’” (ASAN website).

ASAN sees autistic people as an oppressed group, and Autism Acceptance Month is designed to encourage us to embrace autistic people as they are. In support of these ideas, Apple released two beautifully produced videos featuring Dillan Barmache, a young man with autism. Dillan appears to be essentially nonverbal. In the videos, he makes verbal noises and exhibits echolalic speech—repeating the words he hears—which is a common feature of autism. His primary mode of communication is through an iPad. He types on a keypad that his therapist holds for him, and all his words are played back by a computer voice coming from his iPad. As presented in the videos, Dillan is a happy and appealing young person whose mind has been unlocked by his iPad.


Apple video in support of Autism Acceptance Month.

A local news report from a Los Angeles ABC affiliate provides a bit more background on Dillan’s case. He can be seen using keyboards and letter boards, and we learn that his therapist attends classes with him. In June of 2014, Dillan graduated from middle school and gave the commencement address through his iPad.

If you are beginning to wonder where Apple’s support of pseudoscience comes in, hold on. We’re getting there. But first a brief side trip.

Rapid Prompting Method

Dillan’s typing is part of something called Rapid Prompting Method (RPM), which was developed in Bangalore, India, by Soma Mukhopadhyay, the mother of Tito, a boy with severe autism. At the beginning of training, the method involves rapid fire questioning and prompting and starts with simple forced choice problems, such as “Is the sky red or blue?” The words “red” and “blue” are written on torn scraps of paper, and the student is prompted to touch the correct one.

Eventually children go on to spell out words and sentences by tapping letter boards with their fingers or typing on keyboards. Tito has become a remarkable example of what his mother’s technique can do. In videos he can be seen writing with paper and pencil and typing independently at a keyboard. He has published two books of poetry and a collection of short stories.

Soma Mukhopadhyay using a letter board with a young student.

Mukhopadhyay and Tito came to the United States in 2001, and in 2005 Soma started working with Helping Autism through Learning and Outreach (HALO) in Austin, Texas. Children, parents, and teachers come to HALO to be trained in Soma® RPM by Soma Mukhopadhyay herself. Soma now gives workshops on RPM worldwide, and she and Tito have been featured in news reports on CBS 60 Minutes II and CNN, as well as in a documentary film, A Mother’s Courage: Talking Back to Autism, narrated by Academy Award winner Kate Winslet.5 RPM appears to be spreading rapidly, and Dillan Barmache has become its most recent spokesperson. Or has he?

Has RPM avoided the pitfalls of FC? RPM seems to have solved the problem of authorship because its users are typing independently. No one is holding their hands. But RPM bears a close resemblance to FC, and there is still reason to question whether the students are actually the authors of their typing. Here are some of the questions that remain:

Could the Adults Be Guiding the Children?

In videos of RPM training, the letter board or keyboard is held aloft by a person who is verbally competent—a parent or therapist. (See the picture of Soma above.)

Why is this done? It seems unnecessary. Why not place the letter board or keyboard on the table and walk away from the child? Instead, Dillan’s therapist accompanies him throughout the school day so that she can hold his keyboard. Tito is perhaps RPM’s most successful case, and although he seems to have some independent typing and writing skills, this CBS 60 Minutes video shows that when Tito is writing with pencil and paper, his mother is almost always holding onto the clipboard he uses for support.


A 60 Minutes segment featuring Soma and Tito.

Prompting is a well-established technique that is widely used in teaching, but the goal is to eliminate the prompts as soon as possible and have the student perform independently. If prompting is excessive or is not faded out quickly enough, the student can become “prompt dependent.”6 Rather than learning to identify the printed word blue for the color of the sky, the student relies on the teacher’s guidance and gestures. As the history of FC suggests, all of this can happen without the facilitator or RPM therapist being aware of it. FC involves unconscious prompting very much like the famous case of Clever Hans, the horse who seemed to be able answer mathematical questions by rhythmically stomping his hooves. Subsequent testing showed that he was responding not to the problems he was asked to solve but to subtle cues provided by his owner.

Clever Hans and his owner, Wilhelm von Osten.

Often the RPM therapist can be seen moving the letter board around in the air, potentially guiding students to the correct responses. Meanwhile, the therapist is always looking intently at the letter board even when the child is not. Although the child’s hand is not being held, the possibility remains that the parent or therapist is subtly guiding the responses in the desired direction. In addition, parents and therapists often stand or sit very close, touching the child elsewhere on the body. This physical contact provides another avenue for subtle cuing.

Perhaps the strongest evidence for prompt dependence comes from the most famous of all RPM students, Tito. In her book, Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism, Portia Iverson relates her experiences with Soma and Tito when they first came to the United States. Mukhopadhyay trained Iverson’s autistic son, Dov, and Strange Son is generally very supportive of RPM. However, Iverson writes that she encouraged Soma to have Tito see a psychologist, Samuel Smithyman. Smithyman’s primary goal in working with Tito was to determine whether it was possible to communicate with the boy without his mother in the room. After two years of trying, he gave up.7 “I thought eventually we’d be able to connect. But we never really could”.8

Why Have There Been No Tests of RPM?

RPM, like FC, is amenable to easy tests of authorship. It would be quite simple to separate the communicator and therapist, obstruct the vision of the therapist, or ask questions of the students that their therapists are unable to hear. But in the over ten years that HALO has been in operation, there have been no empirical tests of authorship like the ones that revealed the truth about FC. The only published study of RPM is an analysis of videos provided by HALO that did not test for authorship.9

One reason for the absence of empirical tests is that, so far, RPM has not produced any accusations of sexual abuse. The truth about FC only began to emerge when descriptions of sexual abuse were typed out on the letter boards of children who were using the technique. Court cases brought against their parents or other adults made it imperative that the true author of the statements—facilitator or communicator—be determined by objective testing. If a sexual abuse case ever surfaces involving RPM, Mukhopadhyay’s apparent reluctance to conduct validating research will be swept aside.

How Do the Children Learn So Fast?

The typical RPM success story recounts children who, though previously nonverbal, are able to spell words correctly and solve math problems after just a few days of training. The report below comes from a newspaper account of RPM training Soma conducted in Ireland with a nine-year-old boy who was previously nonverbal:

“The trainer proved to his parents that he could understand everything they said and that he could already spell. He just had no way of showing them. Before the end of the three-day workshop he spelled out that his favourite colour was orange and he knew God lived in Heaven.”

This is a familiar story. Children trained in FC were also said to have been silently absorbing spelling and grammar all along, and FC merely provided a key to unlock what was already inside. Later, scientific testing revealed that the good spellers were actually the facilitators.

Critics of FC Are Also Critical of RPM

I was alerted to the concerns surrounding RPM by James Todd, a psychology professor at Eastern Michigan University, and Jason Travers, a professor of special education at the University of Kansas. Both are prominent critics of FC and RPM. Todd provided expert testimony in the Anna Stubblefield sexual assault case, and both have published articles about FC and RPM.

In preparation for this article, I asked Todd and Travers to watch segments of unedited video from a recent WGRZ-TV (Buffalo, NY) segment about two children, Kaylie and Philip, who have been trained using RPM.


Unedited video of Philip typing.


Unedited footage of Kaylie typing.

Todd and Travers agreed that the parents in these videos were undoubtedly sincere and well-intentioned, but Todd suggested that while holding the keyboards in the air, the parents were providing subtle cues to their children. Travers said, “Kaylie often appears to be typing without looking at the keyboard and with her eyes closed, and we can see her mother providing pressure toward the finger to indicate when a key should be pressed. Philip also appears at times to be typing without looking, and when errors accrue, his mother restarts the word as if the error never happened.”

I also asked Howard Shane of Harvard University Medical School to comment for this article. Shane is Director of the Center for Communication Enhancement and the Autism Language Program at Boston Children’s Hospital, and he was involved in some of the earliest tests showing that FC was invalid. Shane has watched many videos of children trained using RPM, and, consistent with Todd and Travers, he believes the typing was very likely the result of subtle—probably unconscious—guidance by the parent or therapist. He pointed out that the proponents of RPM have never provided a justification for holding the keyboard in the air. “Why not construct a keyboard stand at the child’s preferred height and angle and put it on a table?” he asks.

Shane speaks from experience. Over several decades he and his colleagues have designed technologies to help people communicate independently. He is troubled by the on-going need for facilitation and prompting in FC and RPM:

“Our approach is to try to find some access point. Some movement that the individual can use to control a microprocessor, and we have been very successful. We see some of the most physically disabled children on the planet, and to suggest that a child with autism is not capable of independently controlling some kind of communication technology is insulting.”—Howard Shane, PhD, Boston Children’s Hospital.

So at the very least, we are unable to say whether RPM really works or not. Are the children really learning to speak, or are they being prodded by their parents and therapist? Serious questions remain. In a 2014 article comparing FC and RPM, Amy Tostanoski of Texas State University and her coauthors found striking similarities between the two techniques. They concluded their assessment by saying, “Clients, proponents, and practitioners of RPM should demand scientific validation of RPM in order to ensure the safety of people with disabilities receiving RPM.”10

Coming Full Circle

And now we are back to Apple. Both FC and RPM often involve an iPad or another kind of tablet, and Apple’s Autism Acceptance Month videos featuring Dillan appear to associate the Apple iPad with the heartwarming story of a young man freed from the bonds of silence and isolation. But does Apple realize that the communication technique featured in the video has not been tested and may be pseudoscience? Does Apple understand that there is reason to believe that Dillan is not the author of the sentences coming out of his tablet?

Whether Apple realizes it or not, what they have done is actually worse than just encouraging RPM. As I mentioned above, Autism Acceptance Month is a project of the Autistic Self Advocacy Network (ASAN). Although ASAN has many admirable goals, they take the following position on the available autism treatments:

Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). (“Position Statements,” Autistic Self Advocacy Network website)

ASAN explicitly endorses not only the yet-to-be-validated and possibly pseudoscientific rapid prompting method (RPM) but the thoroughly debunked quack therapy facilitated communication. In their push to have the voices of autistic people heard, ASAN appears not to be concerned whether the voices are actually those of people with autism. The voices of their well-meaning caregivers will do.

Just to bring us full circle, you will recall that ASAN is part of the neurodiversity movement—perhaps the most visible and active segment of that movement. Several paragraphs back I gave you a definition of neurodiversity that was crafted at the National Symposium on Neurodiversity in 2011. Perhaps now is the time to point out that that symposium was held at Syracuse University and was cosponsored by the Institute on Communication and Inclusion, formerly known as the Facilitated Communication Institute. FC is an integral part of the neurodiversity movement, and before her legal troubles began, Anna Stubblefield was an active participant in the movement. In 2011, she published an article in Disability Studies Quarterly suggesting that opposition to FC should be considered hate speech.11

To its credit, Apple pioneered user-friendly interfaces, and for years the company has made special efforts to increase the accessibility of their machines for people with a wide range of abilities.12 But in this case, Apple has given its support to an organization that promotes pseudoscience, and indeed Apple is profiting from that pseudoscience. Apple may not be selling the snake oil, but at very least Apple is selling the bottles the snake oil comes in.

For people with autism, the stakes are very high. RPM has been promoted as the key to unlocking their hidden voices, but if the therapists are the ones directing the typing, then RPM instead takes away their voices. We now know that FC is a dangerous illusion that turns nonverbal people into marionettes controlled by their facilitators, and many professionals believe that RPM may be doing the same thing. Given RPM’s surging popularity, empirical tests of authorship are desperately needed.

Acceptance is an admirable thing, but as long as ASAN continues to endorse bogus communication techniques, it will fail at its own goal. Before acceptance can be achieved, we must allow the authentic person to emerge. Who is the real Tito? The one sitting at his mother’s side writing poetry or the one separated from his mother who, after two years of trying, is incapable of communicating with his psychologist? How we answer this question—for Tito and for all children using RPM—will determine whether we treat them with the respect they deserve or subject them to more indignity. It will determine whether we waste their time on meaningless training that increases their dependence or give them an education that reveals their true voices and makes them less dependent.

RPM has been promoted in the United States for over ten years. It is time someone determined whether or not it works.



Notes

  1. I last wrote about facilitated communication in May of 2015
  2. Jacobson, John W., Richard M. Foxx, and James A. Mulick. 2015. "Facilitated communication." Controversial Therapies for Autism and Intellectual Disabilities: Fad, Fashion, and Science in Professional Practice, 283.
  3. Palfreman, J., Producer. 1993. Frontline: “Prisoners of Silence.” Boston, MA: WGBH Public Television (October 19).
  4. https://en.wikipedia.org/wiki/Facilitated_communication
  5. Tostanoski, Amy, Russell Lang, Tracy Raulston, et al. 2014. "Voices from the Past: Comparing the Rapid Prompting Method and Facilitated Communication." Developmental Neurorehabilitation 17(4): 219–223.
  6. Lang, Russell, Amy Harbison Tostanoski, Jason Travers, and James Todd. 2014. "The Only Study Investigating the Rapid Prompting Method Has Serious Methodological Flaws but Data Suggest the Most Likely Outcome Is Prompt Dependency." Evidence-Based Communication Assessment and Intervention 8(1): 40–48.
  7. Iversen, Portia. Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism. Penguin, 2007.
  8. Iversen, 2007, p. 370.
  9. Chen, Grace Megumi, Keith Jonathon Yoder, Barbara Lynn Ganzel, et al. 2012 "Harnessing Repetitive Behaviours to Engage Attention and Learning in a Novel Therapy for Autism: An Exploratory Analysis." Frontiers in Psychology 3: 12.
  10. Tostanoski et al. 2014, p. 4.
  11. Stubblefield, Anna. 2011. "Sound and Fury: When Opposition to Facilitated Communication Functions as Hate Speech." Disability Studies Quarterly 31(4 ).
  12. Broussard, Mitchel. Apple Celebrates Autism Acceptance Month With Two New Videos, MacRumors, April 2, 2016. Available online at http://www.macrumors.com/2016/04/02/apple-autism-acceptance-month/.

Stuart Vyse

Stuart Vyse's photo

Stuart Vyse is a psychologist and author of Believing in Magic: The Psychology of Superstition, which won the William James Book Award of the American Psychological Association. He is also author of Going Broke: Why American’s Can’t Hold on to Their Money. As an expert on irrational behavior, he is frequently quoted in the press and has made appearances on CNN International, the PBS NewsHour, and NPR’s Science Friday. He can be found on Twitter at @stuartvyse.