Coping with RPM: Review of “Far From the Tree”
IMDB describes the movie Far from the Tree (2017) as an examination of “the experiences of families in which parents and children are profoundly different from one another in a variety of ways.” The movie is based on Andrew Solomon’s book of the same name and was directed by Rachel Dretzin and Jamila Ephron.
Far From the Tree (2017)
For this review, I focus on a vignette in which Facilitated Communication (FC), in the form of Rapid Prompting Method (RPM), is introduced for the first time to Jack, a non-speaking boy with profound autism. As compelling as the story appears on the surface, it is unfortunate that the filmmakers chose to feature this pseudoscientific technique. Intentionally or not, the film may fundamentally mislead people about autism and the scientifically reliable, evidence-based treatments available to individuals with profound communication difficulties.
Still, films like this offer an opportunity to explore why parents of children with profound autism and other developmental delays may adopt FC as a coping strategy despite the evidence against it.
The criticism that follows is of the technique and not of the individuals being subjected to it.
RPM is a facilitator-dependent communication technique invented by Soma Mukhopadhyay to use with her profoundly autistic son, Tito. In 2001, Soma brought her technique to the United States in support of Portia Iversen’s organization Cure Autism Now! (now part of Autism Speaks). From there, Mukhopadhyay started a for-profit business, HALO, where RPM is unapologetically promoted as a technique that yields results “that traditional therapy can’t.”
By “traditional therapy,” I am assuming Mukhopadhyay means legitimate forms of Augmentative and Alternative Communication (AAC), of which RPM is not. Despite Mukhopadhyay’s claims of 100% success rate in this 2020 article , RPM is, as Jack’s father astutely points out upon seeing it for the first time, “almost a parlor trick.”
RPM can give the illusion of independent communication as the facilitator holds a letter board in the air while the client stretches a finger toward the board or holds a stick in that direction. Sadly, there is no reliably controlled evidence to support proponent claims of independent communication and both the American Speech-Language-Hearing Association (ASHA) and the American Association on Intellectual and Developmental Disabilities (AAIDD) have statements opposing both RPM and FC. (See additional Opposition Statements)
As identified by these organizations, RPM is problematic because it builds dependence on the facilitator and not independence for the individuals being subjected to it. Facilitators provide visual, physical, and verbal cues that range from subtle and to not-so-subtle movements and holds. Over time, the clients learn to point on cue.
Much of Mukhopadhyay’s facilitation in the movie is quickly edited or fast-forwarded, but in another movie, A Mother’s Courage, she is clearly depicted moving the board in the air, controlling the letters selected by only offering stencils stamped with the desired letters, allowing students to “facilitate” without looking at the board or attending to the activity, and otherwise providing verbal and physical cues to aid in letter selection. The young man featured in that movie is from Iceland and, as his mother reports, has had minimal exposure to English. Within a few days, however, he is facilitating perfectly spelled words and grammatically correct sentences in a language only the facilitator speaks and writes fluently.
Jack touches the keyboard his mother holds in the air. (Far From the Tree, 2017)
Other facilitators in Far from the Tree are shown holding onto Jack’s shoulder, which is a form of physical cuing that aids in letter selection. In addition, the facilitators hold the letter board in the air, which moves slightly (e.g., up, down, left right, in, out) as they “assist” Jack in spelling out words and sentences. The facilitators may not be consciously aware of the extent to which these cues can control FCed messages.
Despite persistent questions of authorship and facilitator control over FCed messages, why do people continue to use it?
In prior blog posts (here and here), I’ve discussed the idea of FC as a coping strategy for parents overwhelmed by the challenges of raising children with profound autism.
In Far From the Tree, both Jack’s parents are anguished by what they perceive as the loss of their happy, healthy eighteen-month-old to autism.
Jack’s mother, in a gut-wrenching scene, describes it this way:
As he got older it became scratching and pinching and he would routinely hit me. And I was angry with him when he would attack us. It’s hard not to take it personally. I didn’t know how to help him. And I thought, oh my god! This is our life. I blamed it on everything. I blamed it on the medicine that I took when I was pregnant, I blamed it on the bed rest, I blamed it on my health, like maybe I wasn’t as healthy as I could have been when I was pregnant with him. I blamed myself for all of this. Like I caused it.
She didn’t. It is not uncommon for children with Autism Spectrum Disorder (ASD) to gain news skills and meet developmental milestones until around 18 to 24 months of age, then stop gaining new skills or lose them, as appears to be the case for Jack as portrayed in the film. (See What is Autism Spectrum Disorder?)
There is no doubt that Jack’s mother and father absolutely tried their best under extraordinarily difficult circumstances. Their story speaks to the need for immediate and appropriate supports to be in place for families of children with profound autism and developmental disabilities.
As a testament to the parents’ courage, they allowed the world to see a part of autism that some in the community want to erase. In an emotional scene, Jack attacks his mother. He’s bloodied his nose and while she tries to help clean his face, Jack jumps on her, pulls her hair, and punches her. They also show scenes of him, laying on the floor, in a full-blown tantrum.
Jack’s parents were not prepared for life like this. Who would be? In their minds, they tried everything: music therapy, allergy testing, gluten-free dairy-free diet, homeopathy, and hypobaric-oxygen therapy. They took their son to a naturopath and a chiropractor. Of the interventions they tried (and mentioned in the movie), however, only one was evidence-based: speech/language therapy. But—and this is a big but--speech therapy was not successful, at least not in the way Jack’s parents wished. They talk, so why shouldn’t their son talk as well?
To Jack’s parents, Mukhopadhay, with her stencils and magic stick, make their boy “real.” After four long days, he types out “I am trying” and “I am really smart.” That’s all it took for them to override their initial (and intuitively correct) doubts about the technique. (See How Motivated Reasoning Enables Support for Facilitated Communication)
Jack looks away from the keyboard. His facilitator’s hand is on his shoulder guiding his typing arm and hand. (Far From the Tree, 2017)
The scenes of Jack being subjected to FC, at least to me, are not very convincing. Jack looks away from the board while the facilitators hover over him and hold on to his shoulder. He appears disengaged with little interest in the typing. But, significantly, the parents’ view toward their child shifts dramatically.
“I can communicate with him as a mom. That’s all I needed. I just needed to know what’s going on inside your head.”
I’m not unsympathetic to the fact that RPM may well be a coping strategy. RPM is, in part, a function of the ideomotor response. This response (e.g., non-conscious muscle movements) is associated with automatic writing and the use of a planchette or Ouija board where users’ movements—and subsequent writings—are often attributed to something or someone outside themselves. Spiritualists and psychics use these tools to help bereaved relatives “talk” to their dead loved ones (a pseudoscientific practice better left to discuss another day). Maybe this is a way for parents to “talk” with children who are, in many ways, not who the parents imagined they would be.
But that’s not how RPM is marketed. Consumers—and viewers of the movie—are meant to believe the communications achieved using RPM are the independent thoughts of those being subjected to it. .
For all the good intentions Solomon, Dretzin and Ephron may have had featuring a family using RPM, nowhere in the credits, narration, IMDB write-up, or in any of the movie reviews I’ve seen, is there a mention of RPM’s lack of scientific rigor. Nowhere does it mention concerns of facilitator cuing, prompt dependency, and other potential harms (e.g., as ASHA defines it: “lost time and money that cannot be retrieved, reduced opportunities for access to timely, effective, and appropriate interventions; and potential loss of individual communication rights”).
To me, Jack and people like him deserve science-based support to reach their full potential as valuable members of our society whether they’re verbal or non-verbal. In my opinion, Far From the Tree, may seem like a feel-good, miracle story of transformation, but it represents a view that non-speaking individuals are only “real” if they can, using facilitator-generated communication like FC and RPM, type out letters on a letter board. If understanding and celebrating people’s differences is the goal, then why do proponents insist on substituting their own voices for the authentic voices of their loved ones and clients? Why can’t these individuals be honored and celebrated for who they are and not what their facilitators wish them to be?