Talking back to Talking Back to Autism

You’ve got to wonder how many of the enthusiastic reviewers of “A Mother’s Courage: Talking Back to Autism”—in the NYTimes, in the LA Times, and on NPR—actually watched, through anything but tear-blurred eyes, the final scenes of the movie. You’ve got to wonder the same thing about the various autism experts who appear in the movie: David G. Amaral, PhD, Simon Baron-Cohen, PhD, Geraldine Dawson, Phd, and Catherine Lord, PhD. (There’s also a clip of Dr. Sally Rogers, but this was lifted from a 60 Minutes episode; she had no role in this movie).

First released in 2009 as “The Sunshine Boy”, and later as an HBO documentary, “A Mother’s Courage” tips its hand within its first ten minutes. On a pilgrimage from Iceland to the US to learn more about autism, the mother in question, Margret Dagmar Ericsdottir, is shown seated on an airplane with a copy of Portia Iversen’s Strange Son in her lap. Strange Son (say tuned for a full review) recounts Iversen’s efforts to bring Soma Mukhopadhyay and her Rapid Prompting Method from India to the US to unlock Iversen’s son and other non-speaking American autistics. Having foreshadowed the miracles to come, the film takes a long and winding road, making stops at the offices of the autism experts, Temple Grandin’s ranch, the homes of several autism families, and an ABA clinic, with detours through the countryside and rough shores of Iceland with Ericsdottir’s family, including her two non-autistic older sons and the severely autistic Keli. Then the film reaches its destination and devotes its final act to Soma.

The source of Soma’s miracles, the Rapid Prompting Method, has become this century’s most common variant of facilitated communication. Instead of exerting physical pressure on wrists, forearms, or shoulders, as in traditional FC, RPM facilitators hold up letterboards to extended fingers, shift the boards as needed, and decide when a letter—and which letter—has been selected. In my experience, naive observers are much more likely to fall for RPM than for traditional FC, which is perhaps one reason why, ever since Soma set foot on American soil, RPM has left traditional FC in the dust1. (Another reason is that RPM practitioners have learned from the experiments that debunked FC back in the early 1990s that it’s bad for business to submit to empirical testing, and so there are no published message-passing studies that examining the efficacy—or lack thereof—of RPM).

Before we get to Soma, we learn that Ericsdottir pursued various “recommended treatments”, including ABA, with Keli (who is nine years old at the start of the movie), but that these did not help him “to the degree that we had hoped for.” (The voice we hear is that of Kate Winslet, who narrates the film, and the mother’s words, most of which are translated from Icelandic.) Keli’s Icelandic school focused on life skills and, Winslet laments, neglected reading and math.

The first autism celebrity we meet is Temple Grandin, whom Winslet states has “overcome her autism.” Grandin, an expert in animal science and the design of cattle handling facilities, is often treated in the popular media as an expert in autism as well. Unfortunately, she’s gone on record as endorsing facilitated communication, blurbing books like Ralph Savarese’s Reasonable People. Grandin is an expert, of sorts, on her own autism (which she has not overcome), but that autism has perhaps made her too trusting of others, blinding her to their self-serving agendas. She reports accurately on findings on brain research, but also subscribes to debunked notions like tinted lenses for dyslexia and Learning Styles Theory. In her interviews in “Courage” she discusses auditory vs. visual learners, and claims that reading and typing use different brain systems from speech. (All three systems engage the brain’s language circuitry; there aren’t separate language areas for spoken and written English, or for speaking vs. reading vs. typing English sentences). 

Next we sit in on a language assessment by Cathy Lord, PhD, of another autistic boy; an explanation by Geraldine Dawson, PhD, of the genetics of autism; a rumination by Simon Baron-Cohen, PhD, on the association between paternal occupation and autism (guess who’s more likely to have an autistic kid—an artist or an engineer); and a discussion by David Amaral, PhD, on neurons, pruning, and the amygdala. No transition is provided between Amaral’s science and the pseudoscience in the narration that immediately follows, in which Kate Winslet tells us that autistic brains “can’t hear and see at the same time.” (If that sounds familiar, it’s because it repeats Biklen’s notion of “monotropism” which I just wrote about here.) In a second snippet of her interview, Grandin seconds the notion that not being able to see and hear simultaneously is an actual condition, though she proceeds to conflate it with auditory vs. visual learning styles.

After this, the documentary (following a snippet from 60 Minutes in which Sally Rogers, PhD, discusses the need for evidence-based treatment) spends some time at the ABC clinic, where evidence-based treatment (ABA) abounds. Here, severely autistic children are taught life skills like toothbrushing, along with the imitation skills that are prerequisite to benefitting from regular education—which 40% of its clients are eventually able to do. This segment ends with Winslet, speaking for Ericsdottir, noting that there is no equivalent of the ABC clinic in Iceland, but that maybe if she had started earlier with such therapy, Keli would have made more progress.  Left out of the movie is the fact that the ABC clinic actually did some significant work with Keli. It had begun teaching him various life skills, only to be derailed, along with Keli, by the promise of Soma’s miracles. 

“Courage” connects the dots to Soma via Portia Iversen, whom Ericsdottir meets at a conference and later visits at home with her non-speaking autistic son Dov, then in 8th grade. Holding up a keyboard while Dov, looking intermittently at the keyboard, purportedly spells out “I think that kids can get it”, Iversen explains that since the brain’s language centers are on the left side of the brain, and since the left side of the brain controls the right side of the body, the board needs to be held on the right side of the body (speech therapists, take note). Iversen explains that, until Dov started typing through Rapid Prompting, she had no idea that he knew the alphabet and could read. “He must have picked it up from the environment,” she says. After discovering all the things that Dov already knew, Iversen founded a special school for him so he could start learning interesting grade-level material instead of the “baby stuff” he’d been learning up till then. 

The film cuts to the school. A teacher asks the students (there seem to be just two of them) to name a “pressing issue” that the presidential candidates are talking about. On a keyboard held up by his assistant, Dov types out “W-A-R” and, when prompted further, “I-R-A-Q.”

It was Soma who elicited Dov’s first typed words, and so it is to Soma that Ericsdottir turns next. At Soma’s headquarter’s at the Halo Clinic in Austin, Texas, we’re treated to a variety of one-on-one lessons and group sessions. At the start of a lesson, Soma rips two strips of paper in front of the child’s face (this ripping sound serves as an auditory prompt), writes a different choice on each strip, and asks the child to point to the correct one with a pencil. If the child is looking away when Soma presents the choices or when he makes the selection, it doesn’t matter: auditory cues from Soma’s tapping pencil tell the child which choice is to the right and which is to the left. (We learn that the kids most suited to Rapid Prompting are auditory learners;  if on top of this they’re not able to see and hear at the same time, these kids must rarely take in visual information, which makes you wonder how they learned the alphabet, let alone to read and spell).

Soma explains that her method involves a “teach-ask” protocol: students, she says, must learn what to choose and how to choose. Before we spend too much time wondering what exactly this means, the film shifts to Soma in action. A geography lesson goes like this: 

  • Soma rips two strips, labels them, and positions them in front of the child. “Do you want to learn about science or geography?”
  • The child taps his pencil (without obviously looking) on the strip of paper that says “geography”.
  • Soma produces two more strips as before. “Do you want to learn about rivers or valleys?”
  • The child’s pencil taps on “river.”
  • Soma: Let’s spell “river”.
  • Some holds up a letterboard and the pencil touches “R” and then goes to “O”; Soma immediately intercepts the child’s pencil and moves the board away with a “N-n-no d-d-don’t play with it. Properly.” After she repositions the board in front of the child, the pencil touches “I-V-E-R”, but then the child gets upset.
  • Soma then asks the child how he is feeling and rips off two more strips. “Do you feel sad or scared?” 
  • The pencil touches “sad”. 
  • Soma asks, “What do we do when we feel sad?” and holds up the letterboard.
  • The child’s pencil goes to “C” and then “N”. Soma whisks the board away, saying “C-N doesn’t make sense.” She repositions the board and the child’s finger goes to “R” (“Yes, that makes sense”) and then to “Y”.

The film cuts to Soma talking about preparing kids for GED tests, and the boy’s parents saying that Soma’s method is “the best” because it allows him “to express himself.”

Later we see Soma running a group session with several teenaged boys.  She circles the room with a letterboard, prompting each kid to “Tell me about your good point.” Purportedly (it’s hard to tell whether all the letters Soma calls out are actually pointed to, let alone looked at) she elicits “very smart”, “quick”, “not much” (which she treats as deadpan humor), and “stock broker.”

We then visit the home of this last boy, Mitch, one of whose first words was “stocks”: he apparently later explained that, yes, he does want to be a stock broker: that way he can work from home on his computer. When Mitch’s mom holds up a keyboard and tries eliciting some typing, Mitch first tries to bite her arm and then later goes off and bashes his head into the wall several times—enough to dent the dry wall. “Yes, I know you like to do that”, she calmly replies.

The movie climaxes with Keli’s first few sessions of facilitation, as the plaintive soundtrack (Sigur Ros and Bjork) slowly crescendos. While these scenes show no evidence of violent resistance, one of Soma’s fingers sports a bandage, and Keli is literally cornered, wedged between two walls, a table, and Soma. He’s not allowed to get up until the timer runs out, and Soma appears determined to get all the words out of him before this happens. Without looking at the keyboard, without having had any formal instruction in reading and spelling, let alone in reading and spelling in English, squirming nonstop and rubbing his eyes with his free hand, Keli’s pencil (purportedly) types out “Can I learn piano” and “I make song” and “I began when I was small”—with Soma switching once to a board with larger letters (and only half the alphabet), and once to a choice of two short letter sequences on ripped off strips (“mak” vs. “map”), when the letters Keli points to “don’t make sense.” Also interrupting the typing are occasional cuts to Ericsdottir watching anxiously from across the room. By the time that we get to “small”, one of Keli’s eyes has teared up and the soundtrack is soaring. Once Soma extracts that final “L”, she releases Keli from the corner and the camera cuts to Ericsdottir embracing him. From the words she’s coaxed out of the letter boards and the strips via Keli’s pencil, Soma coaxes out a poignant message: Keli has been “making different kinds of music in [his] mind” and “would like to bring them out on piano.”

I infer from the reviews I’ve seen that many viewers were even more teared up than Keli was—so much so that they couldn’t see just how damning the final scene really is. We can’t plausibly say that Keli selected the letters: he never looked at them. We can’t plausibly say that Keli understood what Soma asked him, or understood, let alone knew how to spell, what he was allegedly typing in response: all that was in English. Keli is Icelandic, has never taken an English class, and, as far as anyone knows, there isn’t anything about English that makes it more accessible to non-speaking autistics from Iceland than Icelandic is. Finally, we can’t fault poor facilitation and claim that, however bogus this particular RPM session looked, it was an anomaly: Soma is the master of RPM, and she was the one facilitating. The fact that so many viewers seem to have accepted Keli’s typing as his own says something about just how desperately people want to believe in miraculous breakthroughs, especially when it comes to severe autism, even when the harsh reality is staring them in the face, and when more promising alternatives were clearly presented and extensively explored about half an hour earlier. If only the movie—and the family—hadn’t taken that abrupt left turn in the final act and had chosen the ABC school over HALO as its ultimate destination.

1. As RPM has spread around the country and been leveraged by rival practitioners, it has picked up a couple of additional monickers: most common are Spelling to Communicate and Typing to Communicate.

3 thoughts on “Talking back to Talking Back to Autism

  1. I only got as far as your statement “No transition is provided between Amaral’s science and the pseudoscience in the narration that immediately follows, in which Kate Winslet tells us that autistic brains “can’t hear and see at the same time.” (If that sounds familiar, it’s because it repeats Biklen’s notion of “monotropism” which I just wrote about here.) In a second snippet of her interview, Grandin seconds the notion that not being able to see and hear simultaneously is an actual condition, though she proceeds to conflate it with auditory vs. visual learning styles.” When I finish reading this very long blog (it is 5:40 AM in Israel and I have been up for 3 hours and I really should go back to bed) I plan to comment further.


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