An Unexpected Glimpse into the Minds of Facilitators: Review of “I Am In Here”
This blog post is a review of Elizabeth Bonker and Virginia Breen’s (2011) book “I Am In Here,” which, at the time of its publication, appears to have received no critical reviews despite featuring Rapid Prompting Method (RPM), a variant of Facilitated Communication (FC), developed by Soma Mukhopadhyay. RPM then, as now, has no reliably controlled evidence to back up claims of independent communication for individuals with profound communication difficulties.
“I Am in Here” by Elizabeth Bonker and Virginia Breen (2011, book cover)
The book jacket features testimonials from some prominent, though credulous people: Reporter Tom Brokaw, anti-vaxxers Robert F. Kennedy, Jr. and Jenny McCarthy, autism-cure proponents Suzanne Wright (Autism Speaks)* and Sidney Baker (Autism360.org and the defunct Defeat Autism Now!). Disappointingly, Temple Grandin, a highly regarded spokesperson for autism, is on the list and among those who continue to endorse FC to this day.
“I Am In Here” claims to be a journey of a child with autism who cannot speak but finds her voice. As much I wish this was true, I cannot get past the fact that the poetry and other “conversations” featured in the book are FC-generated. Because facilitator cuing is integral to the “success” of RPM (despite what proponents claim), there is a high probability the words are not Bonker’s but those of her facilitators.
What value I do find in the book comes from Breen’s descriptions of raising a child with profound autism and the psychological appeal of a technique like RPM whose promoters offer 100% success rates. Evidence-based practices (which, sadly Breen abandoned early on) cannot make such a promise and, even with the best care provided, do not always address the root causes of autism.
Breen was, at the time, a highly educated venture capitalist on Wall Street. As a writer herself, she valued spoken and written language and wanted desperately for her non-speaking daughter to experience this as well. She studied computer science at Harvard, business at Columbia, and philosophy in Singapore. She sees the world in terms of “Why People” and “How People,” preferring to find solutions to difficult problems rather than sitting around and complaining about one’s plight.
Bonker, according to Breen’s account, was perfectly normal until the age of 15 months when she received a course of vaccinations. “Within a week,” Breen writes, “her voice was silenced and all the energy and mischief in her eyes drained away.”
There is no evidence that vaccines cause autism and Breen claims not to be “anti-vax,” but nevertheless, she rejected the idea that this change in her daughter was a coincidence.
Yale University School of Medicine’s Child Study Center diagnosed Bonker and her brother Charles with autism. The “A” word, as Breen puts it, the “scourge.” While her brother developed verbal skills, Bonker’s spoken language slipped away. Despite evidence of verbal skills earlier in her life she remained non-verbal after the onset. She also developed behaviors typical of individuals with profound autism: banging her head with her fists or on the floor, sleeplessness, maniacal laughter, restlessness, and an aversion to being touched.
My heart broke as I read:
This is a story of all autism parents: caught between two worlds, one of which always feels as though it’s about to crumble beneath our feet at any moment. Just like the World Trade Center, what you think is indestructible can turn out to be unexpectedly vulnerable under enormous pressure. Life is perpetually unstable and has the potential to take you down a deep, dark hole. I watched my beautiful, healthy child slip away from me into the chaos of autism, and I struggled every day not to be sucked down that hole along with her. (p. 45)
Breen, who blamed herself for holding Bonker down to get the vaccinations, had the financial means and the motivation to try hundreds of treatments in her search to cure her daughter of autism. Some were evidence-based, like Applied Behavior Analysis (ABA) and Speech-Language therapy. Many were not: Neurotherapy (NT), chelation, hyperbaric oxygen treatments, vision therapy, healing prayer, “natural” therapies, Special Carbohydrate Diet, and the like. All fell short of curing Bonker’s autism in the way her mother hoped, which included dreams of restoring her daughter’s ability to speak. At age 13, when the book was published, Bonker’s language abilities remained profoundly limited.
Elizabeth Bonker and Soma Mukhopadhyay. (“I Am In Here”, 2011)
Breen describes finding Mukhopadhyay and RPM in almost spiritual terms. Bonker was 6 years old at the time. Her first typed response was the word “Agony” and, when Mukhopadhyay asked her for more information, she, with facilitated help, typed out “I can’t talk. I am stressed. I have no way to say that I am greatly bored with my day.”
For Breen, her daughter had shattered the silence of autism and escaped from its shackles. Breen put her full faith in Mukhopadhyay. They attended workshops, camps, and received consultations (Read this 2010 article to learn more about the costs of RPM training at the time). Bonker’s assistant, Terri, also took the RPM training. The two faclitators worked 5 hours a day with “fun” bribes to get Bonker to sit through the sessions.
At the end of first grade and with facilitator assistance, Bonker scored in the genius range for I.Q. with a score of 164. Previously, without facilitator assistance, her score was 69.
Breen seems to be aware that RPM and other treatments she’s tried are not scientifically proven, but she writes “those of us who believe that autism is treatable and its impact reversible cannot wait for seemingly endless traditional double-blind studies to pave the road. We must charge forward with hope.” (p. 63)
In a way, I understand Breen’s unrelenting quest to support her daughter, but the facilitator-generated messages included in the book raise some concerns about whose voice is being represented.
Elizabeth Bonker pointing to a letter board while the facilitator holds it in the air. (“I Am In Here,” 2011)
The facilitated messages included discussions of academics, philosophy, religion, medical treatments, and relationship issues graphic enough to make Breen blush. Often, Bonker’s non-verbal behaviors did not coincide with the typed, rapidly prompted ones and the messages, as Breen described it, made her daughter wise beyond her years. Not surprisingly, the facilitated messages also included admonitions not to test the typed responses or take the letter board away (attributed to Bonker), reinforcing Mukhopadhyay’s stance that RPM is to be taken, without question, on face value.
In one particularly disturbing exchange, Mukhopadhyay questions Bonker about head banging. Through RPM, Bonker supposedly reports that she bangs her head because she’s too hot, that she doesn’t feel any pain, and she doesn’t want people to watch when she does it. Breen seems to accept this explanation for the dangerous, self-injurious behavior, which, by her own description had left Bonker bruised and bloodied. She writes:
This discussion has given me some comfort and guidance to better deal with the meltdowns that occur. To know that the crying releases energy for Elizabeth and is not usually related to sorrow makes it easier for me to handle. I still have a hard time when she bangs her head, even though she says it doesn’t cause her pain. (p. 55-56)
The topic of Bonker’s violent outbursts is a recurring theme. At one point, Breen managed to get the Cognitive Behavioral Therapy team at Kennedy Krieger Institute to deliver therapy using RPM. During one of the facilitated sessions, Bonker revealed that Mickey Mouse made her hit herself. The therapists surmised that Disney books, movies and other items were akin to a drug addiction and suggested weaning her off them. Once Bonker was Disney-free, she facilitated that her head was clear, though Breen admitted the lessons they learned at the institute did not eliminate the aggressive behaviors.
Still later in the book, Bonker, via RPM, reports she has “bugs in her head,” which, after going from doctor to doctor, Breen attributes to an undisclosed virus in her daughter’s brain that “natural” therapies seem to treat.
For me, the book raises major concerns:
RPM is promoted as a legitimate form of Augmentative and Alternative Communication (AAC) with no scientific research to back up its claims. FC builds dependence on the facilitator, not independence for the individual being subjected to it;
Double-blind testing for FC does not have to be lengthy or endless. The testing I participated in lasted half a day. It just has to carefully controlled without facilitator involvement in developing or administering the test protocols. The problem for proponents with testing FC is that double-blind testing consistently demonstrates facilitator control over the typed messages. This is not the answer proponents want to hear, so they make excuses not to participate in it. In this case, they hid behind facilitated words.
Facilitators in the book seem to be acting as Speech-Language Pathologists without requisite training or licensing;
Facilitators in the book appear to be giving educational, psychological, religious, medical, and interpersonal advice well outside their scope of expertise or training;
A standardized I.Q. test was given with facilitator assistance and, therefore, subject to facilitator influence and control. Though not trained in administering I.Q. tests, I do wonder how the scoring might change if an adult took a test rated for a six year old child. I also wonder about the professional and ethical ramifications of administering standardized tests using FC;
Cognitive Behavioral Therapy appears to have been provided with RPM as the primary source of communication;
In addition to RPM, the book appears to promote pseudoscientific or fringe treatments to “cure” autism.
Like Diane Twachtman-Cullen, I view FC as a belief system, not a communication technique, and “I Am In Here,” was, to me, an unexpectedly emotional glimpse into the minds of its facilitators.
There are some poignant passages in which Breen, consciously or not, reveals how RPM helps serve as a pressure valve for the chaos of autism. I have deep compassion for Elizabeth, her self-injurious behavior, the hundreds of treatments she’s endured, and for a mother trying to solve a problem that, in all likelihood, cannot be solved in the way she hopes.
I see that, for some, RPM can be a faith-based activity (much like prayer). By her own words, Breen’s guilt, anxiety, and stress are relieved by its use. For a person who highly prizes spoken language, FC may well be the one coping strategy that allows Breen to feel connected with her non-speaking daughter.
Despite no evidence to back up claims of independent communication, Breen’s faith in Mukhopadhyay and RPM is undeniable. From her perspective, FC is a step toward curing the “A” word. It seems Breen believes in the facilitated words and finds solace in them whether the messages are controlled by the facilitator or not.
*I received a note from Autism Speaks on 5/23/22 and 5/26/22 saying the organization does not promote Rapid Prompting Method or Facilitated Communication and shares positions with the American Speech-Language-Hearing Association (ASHA) on both. (See Opposition Statements)
I also wrote to Kennedy Krieger Institute, Autsim360, and the Autism Research Institute (an offshoot of the defunct Defeat Autism Now!) which were mentioned in the book. Hoping these organizations may have evolved in their stance regarding FC/S2C/RPM, I asked whether their organizations had positions regarding facilitator-controlled techniques but received no reply.