Unraveling Unspoken
Unraveling Unspoken
by Benjamin Radford
As a film fan (and two-time writer/director of short films) I have been delighted to be able to see film festivals even during the pandemic. I am also a writer, Deputy Editor of Skeptical Inquirer magazine, and have degrees in both psychology and education. It was in that capacity that a short documentary film titled Unspoken caught my eye, about Emma Zurcher-Long, a girl with autism. The film screened at the Slamdance Film Festival earlier this year, where I saw it.
Executive produced by actress Vera Farmiga, the film is available at, and described on, Videoproject.com: “14-year-old Emma Zurcher-Long invites the viewer on her quest to enrich understanding of what it means to be human in this collaborative self-portrait that portrays her dynamic life as an autistic teenager. For years, Emma’s intelligence was continually underestimated as she struggled to communicate her feelings, needs, and fears to her friends and family. But for the first time in her life, her true voice is finally heard when she begins typing, seeing and hearing the world in ‘hi-res, technicolor and surround sound’. Through her keyboard, Emma strengthens her connection with others, and her insightful writing is both a catalyst for, and a remedy to, the fear and misunderstanding that surrounds autism. Living in the beauty beyond spoken language, Emma is challenging the societal judgment surrounding autism, one keystroke at a time.”
The film has many glowing reviews; Educational Media Reviews Online says it’s “Recommended. Unspoken is worth viewing. It provides a fascinating glimpse into a unique style of communication and engages viewers effectively by allowing the protagonist/subject to speak for herself...Inspirational and enlightening.” Rua M. Williams, in the Canadian Journal of Disability Studies, writes that “By producing this spirited representation of autism, non-fluent speaking, and use of facilitated communication—Emma and the entire Unspoken documentary team have committed themselves to activism in preservation of the human right to communication access.” Katie Flynn, Senior Writer at Havas, goes even further: “Unspoken is, quite possibly, one of the most important short films of our time. Co-directed by a preternaturally smart, young autistic woman, Unspoken gives us a glimpse into what it’s really like to live with Autism and gain a clearer understanding of this often-misunderstood community. Through this extraordinary film, we realize that Autism is not an affliction, but merely, a vital and beautifully relevant perspective to the world.”
Curious to know more about Emma, I looked online and found plenty, including “Emma’s Hope Book a blog written by Emma, and occasionally she invites her parents, Ariane Zurcher and Richard Long to contribute. This blog began as a document of what her parents thought, but when Emma began typing to communicate in the fall of 2012, she proved all those previously held assumptions wrong. Emma’s Hope Book is where Emma publishes her short stories, poems, insights, and opinions, particularly about autism. Emma wrote, ‘my mind talks heavy thoughts, but my mouth talks silliness.’ Emma writes by typing on a keyboard synced with her iPad and wishes people would ‘listen to my writing voice, but they listen to my talking voice instead.’” At one point her mother says of Emma: “Here she was knowing how to read and write for many years but had no way of expressing it… When she started typing a year ago, it opened up all these minds.”
These comments—though superficially inspirational—raised more red flags for me. I’d heard that same sentiment, and identical phrasing, in materials about Facilitated Communication (FC), and it wasn’t the first time in a documentary short. There were five nominees for the 2004 Academy Award in the category of Documentary Short Subject. One of the films, Gerardine Wurzburg’s Autism Is a World, is about a woman named Sue Rubin who was diagnosed with autism at the age of four. Yet, according to the film’s press materials, Sue is now “a junior in college with a top IQ, a tireless disability-rights activist, and an articulate guide into a complex disorder.”
How did this happen? What turned a person with the mental capacity of a two-year-old into a college student with an IQ of 133? The film suggests that this miraculous transformation occurred through the use of FC. Yet the film fails to tell its audience that the technique is not just controversial; it has, in fact, been discredited.
In the 1980s and 1990s, many parents of autistic children (including Rubin’s) turned to facilitated communication, which had been claimed to help autistic children (and others who have limited communication abilities) to communicate better. The idea behind FC is based on the premise that the lack of communication is not due to an underlying cognitive disorder, but instead to motor disorders such as those affecting the ability to coordinate speech. What is needed, FC advocates claim, are trained facilitators to help the autistic children by holding their hands, fingers, or elbows while the child types on a keyboard or points to lists of letters, words, or symbols to communicate. In this way, the child can break through the tragic blockage of her disorder and speak, perhaps for the first time, to her parents and loved ones.
This technique was developed in the 1970s by Rosemary Crossley and others at the Dignity Through Education and Language Communications Centre in Melbourne, Australia. It was introduced in the United States by Douglas Biklen, a special education director at Syracuse University (and a co-producer of the film). Anecdotal stories of children who had been silent all their lives but could now form sentences, express their dreams and fears, and even write poetry encouraged many parents to sign up for classes and hire facilitators. They saw the results as a miraculous breakthrough and signed up for FC workshops and sessions costing hundreds of dollars; specialized equipment cost around $800 more.
Yet the celebration was premature. As the technique and phenomenon were studied further, glaring problems became apparent. The premise that communication problems in autistic patients came from speech motor dysfunction was unsupported by medical science. The messages that the autistic children were sending much more closely matched those of the facilitator than the child. The words, diction, nuances, and grammatical structures used in the messages frequently far exceeded what an autistic child could have learned. This, however, rarely deterred FC proponents, who stubbornly took this troublesome evidence instead as proof that doctors were underestimating the autistic childrens’ abilities—exactly as we saw in Emma’s case.
Frequently the child wasn’t even looking at the keyboard or letters, yet continued to type out her messages. Furthermore, when the child was asked questions only the child knew (but the facilitator didn’t), the child was unresponsive or gave incorrect answers; similarly, when the facilitator and child were shown two pictures independently, the child responded correctly only when the same pictures were also seen by the facilitator. In short, it was clear that the facilitators were fooling themselves and simply typing out what they thought the child would say.
So it was with a sense of both unease and déjà vu that I watched Unspoken. In the film we see that Emma is the author of many inspirational quotes (many of which appear onscreen, such as “Piercing shards of past and present pain cause me to turn away or make faces or laugh out loud to lessen the weightiness”). Allegedly all the narrative in the film was written by Emma as well (or at least adapted from her writing).
However in her everyday interaction she does not seem to exhibit anything resembling that level of diction. She’s also a singer and author of a book, and the film shows that Emma can clearly speak; she says several responsive and substantive comments in the film. She also clearly has good motor skills, which raises the question: Why is her mother holding a keyboard for her as she types?
At some points she seems to be looking at the keyboard as she types, but other times she doesn’t. The clips seen of her typing in the film are not long enough (intentionally or otherwise) to see whether she’s typing words or just a few letters at a time. There may well be better video available of her composing elsewhere, but if not that’s a red flag: Why wouldn’t there be a 10 or 15 minute video of her typing out an eloquent message? If she can speak well enough to sing and communicate with her family, why can’t she just dictate her messages to an assistant, or even a voice-to-text program?
Unspoken raised more questions than answers. Given the carefully edited and presented footage it wasn’t completely clear how (or to what extent) Emma was independently communicating, but it definitely raised a strong suspicion that some variation of FC was at work.
Because the film was being screened at a film festival I got a chance to watch a live Q&A session featuring the filmmakers and Emma with her mother. This is important and useful because we can see the messages, presumably from Emma, being generated in real time—not just retroactively produced, eloquent messages. We can see her mother moving the keyboard for Emma in response to questions from the moderator, and of course we don’t know for certain what if anything Emma typed, as it doesn’t appear on screen. But we know what Emma’s mother says she typed, so either she’s telling the truth or knowingly embellishing. Not surprisingly I saw no hint of any skepticism in the discussion, nor was the phrase facilitated communication mentioned as far as I could tell—though, as I noted, several reviewers described it as such.
Numerous studies over three decades have failed to validate the claims of Crossley, Biklen, and others. The American Psychological Association has found no scientific evidence that FC works, and Gina Green, director of research at the New England Center of Autism, likened the technique to “dowsing sticks and the ouija board.” No one claims that FC proponents or facilitators maliciously deceived parents of autistic children. Yet money was lost and hopes were raised—then shattered—when hope and emotion jumped ahead of science.
These films, as well as others including the 2017 film Deej (see Janyce Boynton’s review in the January/February 2021 issue of Skeptical Inquirer) may in fact document a miracle. Emma seems like a bright and lovely girl, and I sincerely wish her the best. But science and medical evidence suggest that FC is at play, and by leaving out information that casts doubt on the technique, these films may cruelly foster false hopes in friends and families of autistic children.
Benjamin Radford, M.Ed., is a Research Fellow with the Committee for Skeptical Inquiry and Deputy Editor of Skeptical Inquirer science magazine. His articles for SI are available here. He is co-host for the podcast Squaring the Strange and author of a dozen books on media literacy, science literacy, and critical thinking.