Does “Inside the Edge” Live Up to its Claims that FC Leads to Independence?
Inside the Edge: A Journey to Using Speech Through Typing is a 2002 Syracuse University film distributed through the university’s Facilitated Communication Institute (FCI). The film features a young man named Jamie Burke who is, purportedly, on a journey from typing to speaking while being subjected to Facilitated Communication (FC).
The film, misleadingly, identifies FC as a form of Augmentative and Alternative Communication (AAC). Facilitator-dependent techniques, by definition, cannot produce independent communication for individuals subjected to their use and, therefore, do not qualify as AAC.
Jamie Burke and his mother, Sheree, from Inside the Edge, a 2002 documentary featuring Facilitated Communication (FC) produced by Syracuse University’s Facilitated Communication Institute. (Inside the Edge, 2002).
This skewed view of FC can be traced directly to Douglas Biklen, FCI’s founder, who is co-producer of the film with Christi Kasa-Hendrickson, (a so-called FC “master trainer”), and Alicia Broderick. Biklen’s been claiming that FC is a form of AAC for 30+ years while failing to produce any evidence whatsoever that FC leads to independent communication.
Not surprisingly, none of the well-documented problems with FC are included in the film: prompt dependency, facilitator control, lack of empirical evidence, and potential harms (e.g., false allegations of abuse and facilitator crimes).
Through no fault of his own, Burke appears to be used in the documentary to promote the FC-party line. At the age of 15, when the documentary was filmed, Burke can speak, read typed messages (or cue cards held by the camera operator), and, purportedly, type independently. His successful journey to speech, the film claims, is a result of teachers who “presume competence.”
At first glance, it appears the words Burke reads are his own. And, despite his claim that “my typing is now free from physical touch,” images from the film reveal that this is not true.
Jamie Burke, age 15, being “supported” by his facilitators: at the wrist, shoulders, and forearm, even though the film’s producers claim his typing is “independent.” (Inside the Edge, 2002).
Several facilitators, including his mother, hold his wrist, forearms, elbows, or shoulders while he extends a pointed finger toward the keyboard. Sometimes, facilitator cuing can be subtle, but in this case, detecting facilitator movement is possible with the naked eye as the facilitator(s) push or pull his shoulders or tug on his forearm while maintaining eye contact with the keyboard.
If this activity is not intended to influence letter selection, then what possible purpose does it serve?
The script alludes to Burke’s need for emotional support (to make FC “work”?), but he’s been “practicing” FC since the age of five. It doesn’t say much for FC that after 10 years, Jamie isn’t able to type his own words without facilitators hovering within arms’ reach.
Rosemary Crossley enveloping Jamie Burke (age 5) and holding his wrists to get him to touch letters on a keyboard. (Inside the Edge, 2002)
The film includes some video of Burke as a child. He was introduced to FC through Australian founder Rosemary Crossley who, as this ABC Ramp Up article documents, literally used her weight to coerce him into submitting to the technique. She states:
To find out whether facilitated communication works, ask those who've become independent typists, or in some cases even learned to speak. People like Jamie Burke. In 1992 Jamie was a non-speaking wriggly 5-year-old with severe autism. After I sat on him (literally) and held his wrist to make him stay still and focus, he learnt to type. As a teenager he started to type independently and to read out his typing. He's now about to graduate university. Jamie and friends can be seen in the video Here We Are World. Again, the achievement of independence has been repeatedly documented in the academic literature (Bernadi & Tuzzi, 2011). (Emphasis mine)
Although Crossley states that Burke was a “non-speaking wriggly 5-year-old,” the documentary contradicts this claim. “I have always been able to use my voice some,” Burke tells viewers “But not always in ways that conveyed the message I intended.”
It does appear that Burke has repetitive and/or echolalic speech, though, curiously, the producers carefully edit most of these moments out of the film. This is a common characteristic of autism and can be intermingled with meaningful spoken language.
However, there appears to be a direct correlation between Burke starting “the glad tidings” of FC and his diminished use of the spoken word. Burke narrates:
When I was young, I stopped talking altogether. I did this because I could not both talk and type. My brain felt confused by speaking so typing was correct for me.
This statement contradicts the research on language development and AAC use. The American Speech Language Hearing Association (ASHA) website addresses this common concern:
A lot of people wonder if using AAC will stop someone from talking or will slow down language development. This is not true—research shows that AAC can actually help with these concerns! People who use AAC can also learn how to read and write.
What Burke would not have known at age five—and probably was never told even as a young adult—is that Crossley, Biklen and others encourage(d) facilitators to ignore spoken language in lieu of typed, facilitated messages. (See No More! No More! as a current-day example).
I find this particularly tragic given that Burke also claims in the film that “as a silent boy I was not feeling that my voice was normal, so even though words were possible, typing was clearer.” (emphasis mine)
It seems to me that the only way Burke would have known his voice was “not normal” was if the adults around him told him so. I can’t help but wonder how Burke’s independent spoken language skills might have developed had he received appropriate speech/language services for the intervening years. (He claims to have started talking again around age 12).
Ironically, there is a scene in the film where Burke both talks and types at the same time, which appears to contradict his claim that talking and typing is too confusing for his brain.
Further, this curious ability to speak one thing and type something completely different also contradicts proponents’ claims about monotropism. Monotropism is an idea heavily promoted in the pro-FC film A Mother’s Courage that individuals with autism can either attend to visual stimuli or auditory stimuli, but they can’t do both at the same time. (See Monotropism and tunnel vision)
What perplexes me is how Burke can say “Mickey turns into Frankenstein” while typing (with his facilitator) his own insights about Edgar Alan Poe.
I tried doing this but found myself unable to type disparate messages. I either typed what I was thinking or typed what I was saying aloud. I couldn’t, for example, say “Mickey turns into Frankenstein” repeatedly and type out this paragraph.
Either this ability is yet another autism superpower or Burke had some assistance (perhaps from the person holding his shoulders).
Again, contradicting himself, Burke claims that the use of his Lightwriter, a voice activation device, contributed to his ability to learn spoken language. Jamie reads:
I decided to take a risk and began to say the words and letters as I typed them out on my Lightwriter and I encourage others to do the same.
My question is, why wasn’t this a part of Burke’s educational training right from the beginning? Why was speech discouraged in 1992 when he used FC with Crossley, but encouraged 7 years later? What changed?
Burke also claims he learned how to read by “being around books” in his environment, although this, he says, came with some challenges. He narrates:
And my mom gave me the sound I needed to get started. This might have appeared like I didn’t know the word I was trying to read. I know how to read all of the words. I just have trouble pronouncing them correctly at times.
Indeed, Burke stumbled pronouncing “occupational therapist” and other complex words while reading, but this is common in individuals who’ve only seen particular words in writing and, perhaps, don’t use them regularly in conversation.
Literacy, however, is more than decoding words. It is possible to read words and not understand their meaning.
This happens to me, occasionally, as I do the daily crossword puzzle. There are, of course, some English words I can pronounce but don’t know what they mean. But, I especially notice this problem when I’m presented with non-English clues.
For example, problem-solving the clue: Spanish phrase for “enough is enough.” Once I’ve figured out the answer (often by using the words around it in the puzzle as context clues), I might be able to make a good approximation of how to say “basta ya” aloud without having previously known its meaning.
With this in mind, I wonder about Burke’s ability to comprehend all that he read. Proponents discourage testing of authorship. Certainly, some of the vocabulary and phrasing used in the scripted narration didn’t sound like something a 15-year-old boy would say.
It used to be others did not see me as a mostly enviable friend that boys wanted. I am not feeling very much that places that are normal are where I desire to be. Perhaps I might say that life as a boy with autism makes no place fully as yours.
Because of these inconsistencies, common in pro-FC films like Inside the Edge, I get frustrated watching them.
But let me be absolutely clear that any fault I find with the film is directed at the FCI’s promotion of FC in the face of overwhelming evidence against it, and not with Burke himself.
As a historical note, in 2002, when Inside the Edge was produced, the FCI was suffering from credibility issues. Despite (at the time) 10+ years of trying, proponents had yet to produce one single example of independent communication in individuals subjected to FC.*
I think it’s quite possible this film was an attempt to deflect attention away from yet another systematic review, published in 2001—the fourth or fifth of its kind—showing that FC (still) had no reliably controlled evidence to support its use. In addition, the list of organizations opposing FC use was growing, not diminishing. (See Opposition Statements).
The FCI needed a likable, relatable person to represent the face of FC for Inside the Edge and, I believe, they found it in Jamie Burke.
Do I believe Burke can use spoken language to express independent thoughts? Yes. This might be limited due to echolalic or repetitive speech, but yes.
Do I think Burke can read typed or written words? Yes. He appears to have the decoding and/or rote memory skills to read and recognize words written in English.
Do I think he can comprehend all that he reads? Questionable. I’d love to see this tested in a setting where the facilitator doesn’t know the content and/or is not within Burke’s visual or auditory range.
Do I think Burke types independently and without facilitator control? No, at least not to the degree the filmmakers would like to portray. There was no instance in the film that showed him typing without facilitator “support” in the form of touching his wrist, forearms, elbows, and/or shoulders. Again, I’d love to see this tested in a setting where the facilitator doesn’t know the content and/or is not within Burke’s visual or auditory range.
Having said all this, Burke appears to be, as he repeatedly says he wishes to be, “a cool guy.”
In fact, I wish the film portrayed more of Burke’s true personality, life and interests as a young man with autism and not who promoters of FC wish he could be.
References
Mostert, M. (2001, June). Facilitated communication since 1995: A review of published studies. Journal of Autism and Developmental Disorders, 31 (3), 287-313. DOI: 10.1023/A:1010795219886
Recommended Reading
Beals, K. (2022). Cutting-Edge Language and Literacy Tools for Students on the Autism Spectrum. IGI Global. ISBN: 9781799894438
Beals, Katharine. (2021, February 17). Talking back to Talking Back to Autism (A review of “A Mother’s Courage”). Catharine & Katharine: Writing and reading from the sentence up.
Notes:
*The FCI’s problems persisted even after this film came out. Rather than drop its promotion of FC, Syracuse University decided, in 2010, to change the name of the institute instead. As this New York Times article documents:
We need to do more on F.C., but we can’t call it that,’’ said John Hussman, a major donor to the institute who runs a $6 billion mutual fund and whose son uses the technique. He had just given a talk on the neuroscience of what is now often termed ‘‘supported typing.’’ ‘‘We have to come up with some other name to fly under the radar and maintain credibility,’’ he said.
Jamie Burke is the individual discussed in this case study:
Broderick, A., and Kasa-Hendrickson, C. (2001). “Say just one word at first”: The emergence of reliable speech in a student labeled with autism. The Journal of The Association for Persons with Severe Handicaps. 26 (1), 13-24.
The authors claim Burke’s typing is independent, but as the film’s own images reveal, he continues to rely on facilitators to hold his forearm and/or shoulders to select letters on a keyboard. This activity increases the possibility/probability of facilitator interference with the activity through (inadvertent) cuing.
I will be taking a closer look at this study in future blog post(s). I will put links here when available.