Are Individuals with Profound Autism “Real?”: Bergmann’s “Influence”
Today’s blog post is a review of Michael Bergmann’s 2018 movie Influence, as requested by one of our readers. (Thank you!)
IMDB describes Influence as a drama that “explores young love” as two “deeply challenged young people” communicate “mainly by spelling on a letter board” with the help of their parents.
“Influence.” A 2018 film by Michael Bergmann featuring the discredited technique of Facilitated Communication (FC). (Bergmann, 2018)
I think this is a simplistic and, perhaps, disingenuous description of the film, since it features two profoundly autistic, minimally speaking individuals (played by neurotypical actors) and their parents who use a variant form of Facilitated Communication (FC) as the primary source for obtaining consent for a kiss.
The movie treads into dangerous territory, given that FC has been discredited and many organizations warn not to use it for important life decisions because of legitimate concerns not just about facilitator influence but facilitator control over the “spelled” messages.
However, before I get into all that, I want to skip past the dodgy acting and questionable story line for a moment and suggest that the movie “Influence” is not really about individuals with profound autism. Rather, it is the parents’ thoughts and feelings that are laid bare as they (psychologically) struggle with what it means to have children with profound autism. FC, in this case, appears to help mitigate some of those feelings.
Consider these heartbreaking words spoken by the “mothers” (Helen and Stephanie) at separate times in the movie (emphasis mine):
I loved the words you said, and I remember every word you chose. When you started to lose language, I loved trying to figure out what you meant with the words you had left. I still love that. (Helen)
I think what got to me was when she was little other moms wouldn’t let their kids play with her. As if autism was contagious. Or they were afraid one of the boys would fall in love with her. All the boys were in love with her. But their mothers were afraid that one of them would marry her and ruin his life. I hated those moms but now I sound like one. I just always thought some neurotypical would fall in love with her and she’d have some kind of life. (Stephanie)
…deep, deep inside of me where the truth lives, I don’t feel you as autistic. I know you are, technically, because everybody says so: your teachers, your therapists, your I.E.P., but in my inner mind, Francis, my darling son, if I can’t spell with you, I’m still me and you are still you. (Helen)
Through this lens, it is possible to better understand what FC appears to give these parents—even if it is an illusion: the hope of connecting once more with that idealized child held so dearly in their “inner mind,” to carry on a (sophisticated) conversation, to be like the other children in the neighborhood, to fall in love, have a life, and not be autistic.
In fact, through his characters and facilitated dialogue, Bergmann asks: are non-speaking or minimally speaking individuals with profound autism “real?”
For me, the answer is “of course.”
But for the parents in the movie, life without the facade of carrying on a sophisticated “conversation” through facilitator-generated “spelling” seems too painful to contemplate.
Those new to the world of FC might not know that many people who end up adopting FC in one of its many variant forms (e.g., Spelling to Communicate, Supported Typing, Rapid Prompting Method) do so after abandoning evidence-based methods and techniques. The emotional stakes for getting FC to “work” is high, especially since many modern-day leaders of FC boast 100% success rates. (Borrell, 2020)
Michael Bergmann “facilitates” with his son, Daniel. Daniel does not look at the letter board during the spelling activity. (Bergmann, 2018)
Most rank-and-file facilitators are well-meaning, highly motivated people willing to try anything to “support” their child, even if it means adopting a discredited, disproven, or unproven communication technique. But that approach has many pitfalls and is, in many ways, harmful to the very people they are trying to help. In the most recent push to popularize FC through the media, proponents have aligned themselves with the anti-vax crowd. (See Review of Spellers)
The actors in “Influence” use a strange hybrid of touch-based FC and Rapid Prompting Method (RPM), also known as Spelling to Communicate (S2C), where a letter board is held in the air by the facilitators. This, apparently, is modeled after the technique Bergmann uses with his son, Daniel, though, unlike Daniel (as seen in an interview discussing the film), the actors (mostly) look at the letter board during letter selection. It is highly likely that, as literate individuals, the actors can’t help but look at what they’re supposed to be spelling. (See Wegner et. al., 2003).
However, throughout the film, the parent/facilitators tightly grip their children at the wrist during the letter selection process and the board moves in the air—both hallmarks of facilitator cuing. Sometimes the pairs stand, sit, or lie on the floor with questionable body positioning and, at one point, Stephanie, Lauren’s mother, yanks her daughter’s face toward the letter board to spell while Lauren bites on a pencil. Even if FC was a legitimate form of augmentative and alternative communication (which it is not), these behaviors from the facilitators are invasive and cringeworthy.
The facilitator yanks the pencil clenched in her “daughter’s” teeth toward the letter board to “spell.” How is that “independent” communication? (Bergmann, 2018)
But the concern about FC use in this film does not stop with poor facilitator “technique,” which, under the best of circumstances still does not produce independent communications. Rather, this adult-themed movie centers around two profoundly autistic individuals using FC-generated messages as the sole form of consent for the start of an intimate relationship (e.g., a kiss).
Although questions of authorship arise in the movie, legitimate concerns expressed by the mothers about their own “influence” over the “spelled” communications are smoothed over through circular exchanges where FC-generated messages are validated through more FC-generated messages.
The only proven way of determining authorship in FC/S2C/RPM is through reliably controlled testing where facilitators are blinded to test protocols and the individuals being subjected to the technique(s) have an opportunity to express themselves without facilitator influence. These procedures don’t have to be complicated, and the facilitator/client pair can “spell” precisely the same way as they do in everyday life, but reliably controlled testing does require that the facilitators not be included in designing the test protocols. For validation testing to reliably rule out facilitator “influence,” the facilitator(s) can’t (inadvertently) share information with each other, the client(s), or the examiners.
But, of course, this line of thinking and the execution of a truly blinded test would have put a huge damper on the general tone of the movie (especially since facilitator influence and control has been ruled in—not ruled out—100% of the time under these conditions). (See Controlled Studies and Systematic Reviews)
In a bizarre scene that ends with Francis stripping naked and Lauren eating her shoe, the two mothers struggle to decide whether they—and not their children—made up the idea that the two wanted to kiss. These are legitimate concerns that should have been resolved before moving further.
But the father, Gabriel, who unwaveringly believes in FC, arrives to save the day. Gabriel and Helen get clothes back on Francis and, after more circular exchanges (where FC-generated messages confirm FC-generated messages), the parents decide that the children have “independently”—with their parents’ help—spelled out their desire to kiss.
The parents manipulate their children into a physical embrace after receiving “consent” for a kiss using Facilitated Communication (FC). (Bergmann, 2018)
Creepily, the movie ends in a scene where the mothers manipulate their two profoundly autistic children into a physical embrace. The real-life implications of this kind of behavior from facilitators—even if it is the children’s parents—is serious and could lead to inappropriate and/or criminal behavior. (See False Allegations of Abuse and Facilitator Crimes) Most, if not all, organizations opposing FC/S2C/RPM advise against using the technique(s) for major life decisions, including (and perhaps especially) for intimate relationships. (See Opposition Statements)
To be clear, I believe individuals with profound autism should be encouraged to develop social relationships. But, any discussion(s) around this topic and subsequent actions taken by the autistic individuals should be the result of independent communication that is free from facilitator control. (See Simmons et al., 2021; Todd, 2012)
In sum, Bergmann’s movie “Influence” is problematic in its promotion of FC. And, while it is marketed as a love story between two “deeply challenged” young adults, it is, in my opinion, about parents using FC as an elixir to soothe the psychologically painful reality that their profoundly autistic children are not who they imagined they would be and, most likely, cannot live the life they (the parents) dreamed their children would have.
Through his dialogue, Bergmann asks viewers to consider the question: Are individuals with profound autism “real” without the ability to “communicate” through FC-generated messages obtained with their parents’ “support”?
And, while I believe the answer to this is a resounding “yes,” sadly, it appears Bergmann’s answer to the question is an equally resounding “no.”
References and Recommended Reading:
Borrell, Brendan. (2020, July 1). How one communication tool may fail some autistic people. Spectrum News.
Simmons, W..P., Boynton, J., and Landman, T. (2021, February). Facilitated Communication, Neurodiversity, and Human Rights. Human Rights Quarterly. Volume 43 (1), 138-167. DOI: 10.1353/hrq.2021.0005
Todd , J.T. (2012) The moral obligation to be empirical: Comments on Boynton's “Facilitated Communication—what harm it can do: Confessions of a former facilitator”. Evidence-Based Communication Assessment and Intervention, 6 (1), 36-57. DOI: 10.1080/17489539.2012.704738
Wegner, DM, Fuller, VA, Sparrow, B. (2003, July). Clever hands: Uncontrolled intelligence in facilitated communication. Journal of Personality and Social Psychology. 85 (1): 5-19. DOI: 10.1037/0022-3514.85.1.5