(Cross-posted at FacilitatedCommunication.org)
It’s been a busy two years for irresponsible, pro-FC reporting by the media, which means our “FC in the news” list needs some updating.
But first, we think, the news items that have crossed our radar since April, 2022 (most of which were passed along to us by other people—many thanks for these!) deserve a blog post of their own. I’ll discuss a few of these in detail and then give thumbnails of the rest, arranging each set in reverse chronological order. Nearly all of them are about the most recent versions of FC: Spelling to Communicate (S2C) and Rapid Prompting Method (RPM).
Set 1: Four longer items
April, 2024
BrainandLife.org—a site that describes itself as “trusted by neurologists” and as “offer[ing] the latest news and resources on specific neurologic disorders and brain health.”
On the April 4th Brain and Life Podcast host Dr. Daniel Correa, an assistant professor of neurology and epilepsy at Albert Einstein College of Medicine who specializes in traumatic brain injury, discussed communication in non-speaking autism.
Correa’s first guest was Khari “Needlz” Cain, a music producer and father to Makayla, a non-speaking 16-year-old who communicates via a held-up letterboard. As the podcast’s accompanying text puts it:
Khari and his family recently created a film titled “Makayla’s Voice: A Letter to the World” that shares her experience finding a way to communicate using letter board therapy. As Makayla’s voice has gradually emerged, she has shown her intelligence, interests, and sense of humor to her loved ones.
In the film’s trailer, we see brief clips of Makayla typing on a held-up letterboard, and we hear, attributed to her, the following voiced-over message:
I do not speak but I do communicate. I use a letterboard to type out my thoughts. I hope to help others. I hope to keep learning about the world. I hope I can end silence in autism.
We also learn that Makayla has Phelan-McDermid Syndrome, a genetic abnormality that involves deletions or rearrangements on chromosome 22 and which, in addition to causing autism in at least a quarter of cases, causes intellectual disability in nearly all of them.
In the interview, “Needlz” Cain tells Dr. Correa that Makayla’s first symptoms of atypical development were an inability to follow directions. This he attributes to what he says is Makayla’s inability to control her body. The possibility that the actual problem may be a cognitive or linguistic challenge—specifically, a difficulty in comprehending directions (comprehension difficulties being a well-documented area of major difficulty in autism)—is entertained neither by “Needlz” Cain, nor by Dr. Correa.
“Needlz” Cain proceeds to describe how he came across the S2C-providing service ReClif, how letterboarding unlocked Maykala at age 14 (she’s now 16), and how much language and intelligence was locked up inside her disobedient body.
Dr. Correa is as impressed as any of us might be—provided we don’t know any better and/or don’t think to look past the feel-good anecdotes:
Up until you started to work with Roxy [S2C practitioner Roxy Sewell, Makayla’s “communication partner”] and the letterboard, you guys didn’t really know all the context that Makayla had in her herself and in the movie you can see how she can express herself so clearly and in a lovely way.
…
I found it incredibly touching…that ability that you guys now have to connect with her to help her express herself… and to increase awareness in the community.
Dr. Correa’s second guest is Dr. Deepa Menon, the Assistant Medical Director, Center for Autism Services, Science and Innovation at the Kennedy Krieger Institute.
When asked specifically about the letterboarding, Dr. Menon says she was unfamiliar with it. However, rather than looking up the empirical and critical literature on language acquisition in autism, literacy acquisition in general, and concerns about held-up letterboards, Dr. Menon reports that
I went back and looked at the video [Makayla’s Voice: A Letter to the World]. And it actually looks pretty good. It actually shows that she has the literacy component to be able to spell it out so that it actually to me intriguing.
Dr. Menon does acknowledge that Makayla’s story doesn’t fit the typical literacy and language learning trajectory that begins with phonics and simpler communication systems like PECS (Picture Exchange Communication System). However, apparently on the basis of what she observed in the video, she concludes:
I would think of the letterboard as another part of the augmented communication… Makayla is actually learning to put the words together.
Dr. Menon wonders whether Makayla might be able to type on a keyboard as well, but omits the key question: namely, can Makayla type on a stationary surface without anyone within auditory or visual cueing range providing cues about where her extended index finger should move?
The discussion of Makayla concludes with Dr. Correa proposing that Makayla may have acquired literacy by surfing the Internet (something her father reports that she does) and reminding us of the difficulty that she purportedly has controlling her body, and with Dr. Menon proposing that Makayla may indeed be, as the father suggested, “sort of locked in, almost.”
No matter that this overturns all we know about language acquisition in autism, literacy acquisition in general, and concerns about held-up letterboards, not to mention non-speaking autism and Phelan-McDermid Syndrome.
March, 2024
PBS
PBS removed its well-researched 1993 FC exposé, Prisoners of Silence, from its website years ago, replacing it with pro-FC pseudoscience. (Prisoners of Silence is now only available on the Internet Archive, to which I now donate the money I used to donate to PBS).
The first of the pro-FC documentaries to appear on PBS’s website was Deej; now comes a documentary entitled Understanding Autism. Its director, Scott Steindorff, diagnosed as an adult as autistic, interviews a variety of individuals with autism. Only one of them, Elizabeth Bonker, is an FC user, but Steindorff gives Bonker and her mother quite a bit of air time and enthusiastic commentary.
Starting at 29:00-30:30, her mother sitting next to her and staring at the keyboard whenever Bonker types, we see Bonker pushing a button that plays a much-quoted line from her valedictory speech at Rollins College: “There are 31 million non-speakers with autism who are locked in a in silent cage…” This is followed by a line about getting schools to help free non-speakers by abiding by the Americans with Disabilities Act, and then by Steindorff asserting:
And so we need to get computers and technologies into schools [Here we wonder whether Steindorff has been inside a classroom since the early 1990s] and allow this to happen [What “this” refers to is left unsaid].
Steindorff then asks, “Can somebody give me a rational reason why this is not happening?”
A computerized voiceover attributed to Bonker replies: “This is a matter of money and ego. The service providers will lose money and admit that they were wrong about our capabilities.”
Carefully edited clips of Bonker typing follow, as her mother, Virginia Breen, describes how they had to hire a lawyer to “have her be in public school”—a rather extraordinary statement that Steindorff leaves unchallenged.
The film returns to Bonker at 34:06-36:19, with a computerized voiceover attributed to her, accompanied by soft piano notes, saying “My life is for service for those who are voiceless.” Steindorff brings up the 2011 memoir I am in Here, which contains 70 poems credited to Bonker. He rhapsodizes first about Bonker’s brilliance and the life within her, then about the reference in her valedictory speech to Viktor Frankl’s Man’s Search for Meaning, which Steindorff states is his favorite book. The soft piano notes continue, as does Steindorff’s rhapsodizing. The scene concludes with Steindorff saying “You are such a beautiful soul. Thank you for doing what you do,” and asking Bonker if he can give her a hug. Bonker, unsmiling, leans towards him and Steindorff hugs her.
In discussing his film, Steindorff has stated:
There is a lot of misunderstanding around autism, and through a more thorough understanding of neurodiversity we can reduce the shame and stigma surrounding them. This film is not only for people on the spectrum, but also for the world to watch and learn.
We can certainly agree on the first eight words of that statement.
Egregiously absent from a film called “Understanding Autism” is any commentary by experts in the fields of nonverbal autism and assisted communication regarding the rather surprising claims it airs, and impressions it conveys, about non-speaking autism.
September, 2023
MLB.com website (the official site of Major League Baseball)
A news item on MLB.com website (the official site of Major League Baseball) recounts the friendship between Atlanta Braves’ first baseman Matt Olsen and Reece Blankenship, a high school classmate who “has non-speaking autism.” Reporter Anthony Castrovince describes non-speaking autism as a condition that “leaves [Reece] with little authority over his body movements,” “trapped inside a nightmare,” and “fully capable of understanding the world around him, yet unable to transmit his thoughts”—a set of purported symptoms that is completely inconsistent with the symptoms that have defined autism since the term was first coined 8 decades ago.
Castrovince then discusses the “communication breakthrough that allowed [Reece] to pursue the dreams once locked inside him”: namely, the letterboard.
Cannily, from here Castrovince segues to the claim that “Reece’s condition is not uncommon. According to the National Autism Association, 1 in 36 children are affected by autism, and about 40% of those children do not speak”—thus implying that the rest of those 40% could also benefit from letterboarding.
Returning to Reece, Castrovince recounts how in high school “Reece was diagnosed to have the intellectual capabilities of a 3-year-old,” but then “in 2014, Reece had a quantum leap in communication” after his parents took him to an S2C workshop. Interestingly, Castrovince states that “Reece had done quite a bit of practicing via home-based therapy in the weeks leading up”—though he’s unclear on what this home-based therapy was and whether it amounted to something like S2C. In any case, the actual breakthrough “came early in the workshop,” when one of the therapists asked him what he knew about astronomy:
“We’re going to talk about astronomy,” one of the therapists said to Reece. “Do you know anything about that?”
Reece began pointing to letters on the board, spelling out a complete sentence: “I know Copernicus advocated that the Earth revolves around the sun.”
Lou and Jeff looked at each other in amazement. Doctors had told them their son had the intellectual equivalent of a toddler. But in that moment, he showed he had so much more to offer. “The joke's on us,” says Matt, “because Reece is probably the smartest person in the room.”
One of the consequences of Reece’s communication breakthrough, Castrovince notes, is Reece’s founding of ReClif, a company whose offerings include S2C. Just like Bonker, Reece wants to spread S2C to others. And he has: remember “Needlz” Cain? That’s how he got Makayla started on S2C.
Arizona Public Radio
Another news item from last September showcases S2C, this time in connection with legal guardianship. The person in question, Beth Papp “uses boards with letters and some symbols to spell out phrases” and “then her communication partner, Emily Ulan, reads them out.” Reporter Kirsten Dorman notes that Ulan “also holds the boards up for Papp to access better.”
Based on Papp’s purported communicative capabilities and the messages attributed to her, her mother has made a major decision regarding Papp’s future: they’ve decided against seeking legal guardianship over Papp in her adulthood, and instead opted for something called “supported decision-making.” Apparently Beth has typed out, while Ulan held up the letterboard to her outstretched index finger, “I want to be my own guardian.”
Supported decision-making might be appropriate in cases where the person with disabilities can clearly and authentically communicate their aspirations for adult life. But in cases where the messages are likely to be coming from the communication partner, the process is highly susceptible to hidden, self-serving agendas on the part of the latter that potentially undermine their client’s best interests—as we see, for example, in a chilling moment in Prisoners of Silence where FC-practitioner Rosemary Crossley asks a man in a coma where he wants to live and then slowly moves the man’s head to point to one of four choices on a piece of paper, thus making him appear to choose “nursing home” over “parents.”
Dorman does briefly acknowledge that controversy exists. She quotes Beth’s mother as saying that “Papp’s communication method isn’t recognized by the court system.” She adds that “some consider it controversial due to concerns surrounding authorship – or who’s crafting and influencing the messages.” But she immediately follows this with:
But one message is clear: “I want to be my own guardian. I want to make decisions for myself,” Papp said.
And later, Dorman adds:
In Papp’s case: Her communication method is so new that there’s little research on it.
No, S2C is not new, and there’s plenty of research showing its lack of empirical support. But S2C is apparently new to Dorman, who, like all the journalists and neuropsychology professionals discussed above, has apparently done little-to-no research before discussing it.
The pattern continues below.
Set 2: 20 additional stories in brief
April, 2024
LAist, a newsroom that is home to L.A.’s largest National Public Radio station.
In an LAist news story, Gab Chabrán, a food editor and father of an autistic girl, reports on a beer “made and marketed by nonspeaking autistics” who use “the Spellers Method, a series of letter boards that allowed individuals to point to letters to help them spell out the words to communicate.” Meg Gill, the CEO and co-founder of the brewery and also the parent of an autistic girl, discovered JB Handley’s S2C-promoting memoir Underestimated, which connected her to Dawnmarie Gaivin, who plays a starring role in Underestimated and runs a nearby S2C outfit.
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
The Sun Journal, a Lewiston Maine newspaper
A puff piece on S2C practitioner Rebekah Carmichael-Austin, which consists of a bunch of softball questions and extended answers from Carmichael-Austin. The latter recounts how she learned about S2C after watching the documentary Far from the Tree (see Janyce’s review), taking her son to Elizabeth Vosseller’s S2C clinic, and “witnessing Kaleb answer age-appropriate questions on the letter board.” Carmichael-Austin later founded her own S2C clinic. She states that 70% of her clients are autistic, while “the other 30% have a motor component to it like Down syndrome or Angelman syndrome, and that most “have apraxia, a neurological condition that disrupts their ability to control body movements despite their desire and physical capability to do so.”
No mention of the complete lack of evidence base for S2C, including its claims about apraxia, or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
February, 2024
CFJC Today, a TV news show out of Kamloops, British Columbia
Reporter Adam Donelly reports on an RPM user who goes from nonspeaking to “incredibly well-spoken” thanks to the work of RPM practitioner Madison Imber. Donelly also discusses the promotion of RPM and S2C by both Imber and the boy and his family.
No mention of the complete lack of evidence base for RPM or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
November, 2023
BBC News
A video posted on the BBC news website profiles a non-speaker with autism who purportedly directed and starred in a short, autobiographical film. A brief clip of the person typing shows another person holding his upper arm as he slowly picks out letters with his index finger. The film’s voiceover, in a statement attributed to the letter-selector, states that he was desperate to move on from Teletubbies to books written for people his age. The voice adds, in words that echo other FC-generated messages, including the statements attributed to Naoki Higashida in The Reason I Jump (see here), that nonverbal people are “deep thinkers” and “people watchers” who “sense the world in deeper ways than those who talk.” But they also, the voice adds, have “the same dreams as everyone else.”
The same non-speaker is also featured, around the two-minute mark, in this earlier BBC news segment.
No mention of the complete lack of evidence base for FC or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
October, 2023
Channel 19 in Cleveland
A brief report about a “new tool” called S2C that “gives people with motor challenges the skills they need to be able to point to letters to spell words.” The hosts, together with a local S2C practitioner, mostly recite the main talking points of S2C proponents. The report closes with information about the local S2C clinic, AccessS2C.com, with one host emphatically asserting that its mission is “to support every speller’s human right to communication and self-advocacy.” Cleveland 19 provides a link with more information and testimonials.
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
September, 2023
San Francisco Public Radio
An article on KQED’s California Report Magazine reports on a non-speaking 19-year-old who has purportedly learned to slowly type out messages with his index finger using some unspecified method (in the picture, the device is held up, RPM/S2C-style). The article reports that people assumed that the boy’s IQ was low because “he didn’t have the motor skills to point to the right answers in school.” While the article acknowledges the controversy surrounding FC, it lets Dr. Margaret Bauman, one of the boy’s neurologists, have the last word on both Jacob’s purportedly high intelligence and the purported independence of his typing. (Bauman has a history of defending FC.)
No mention of the complete lack of evidence base for RPM/S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
Good Morning America
A segment in which Juju Chang interviews Angie Kim about Kim’s pro-S2C book Happiness Falls and visits Kim at Elizabeth Vosseller’s S2C clinic. Here, Chang reports in a tone of awe, as clips play of Vosseller’s clients pointing to letters on held-up letterboards, how “We watched as trained practitioners sat with students to spell their thoughts on their own, letter by painstaking letter.” The closest Chang comes to acknowledging the lack of empirical support for S2C is to call it “unique yet controversial.”
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
September, 2023
The Irish Times
An opinion piece by a mother on how she unlocked her son through S2C.
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
July, 2023
Good Morning America
A GMA YouTube video features S2C user Gabe purportedly sharing his thoughts about his friendship with a speaking autistic teenager like Ariel. Clips of him using S2C start at around 1:30.
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
Time Magazine
An article on autism research priorities is attributed to a non-speaking autistic individual of whom there is no public record of independent typing; only videos of pre-recorded messages or of slow typing with someone sitting or standing within cueing range.
No mention of any attempt to validate the surprising notion that the article was actually authored by the non-speaking autistic person credited with writing it—someone who, by virtue of his diagnosis, is highly unlikely to have the language and literacy skills the article exemplifies.
KJRH TV in Tulsa
A segment entitled “Spelling to Communicate allows Tulsa teen to speak for the first time” features the teen, his mother, and the speech-language pathologist who directs the local S2C clinic and introduced S2C to him. Reporter Naomi Keitt states that the boy, Jake, “has autism and apraxia which is a motor condition that makes it difficult for Jake to gain control of his body.” She also reports that Jake recently presented at the Eastern Oklahoma Autism Conference, earns straight As, and hopes to study neuropsychology at the University of Oklahoma. As the segment closes, one of the news anchors adds “That is very impressive” and the other responds “That is incredible, how they can finally communicate.”
No mention of the complete lack of evidence base for S2C or these claims about apraxia, or of any of the many health, education, and advocacy groups that have expressed serious concerns about S2C.
May, 2023
Nature
A story in Nature entitled ‘I am not a broken version of normal’— autistic people argue for a stronger voice in research, which we blogged about here, attributes sophisticated commentary about research priorities from two non-speaking individuals whose verbal communications are known to be extracted via the prompting and held-up letterboards/keyboards that characterize RPM and S2C.
No mention of any attempt to validate the crucial question of whether these commentaries were actually authored by the non-speaking autistic individuals credited with making them—individuals who, by virtue of their diagnoses, are highly unlikely to have the language and literacy skills the article exemplifies, and whose messages are generated by methodologies known to be susceptible to facilitator control.
April, 2023
Fox 17 News, Western Michigan
A local news station reports on the S2C movie Spellers (see our review here).
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
CityLifestyle.com, a Leesburg Virginia publication
A report of a Leesburg Virginia publication of an RPM user (one of 16 runners-up in the 2021 New York Times Middle School Essay Contest).
No mention of the complete lack of evidence base for RPM or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
February, 2023
USA Today
A story on the problem of “elopement” in autism works in a plug for S2C “inventor” Elizabeth Vosseller. Journalist Cybele Mayes-Osterman states that Vosseller’s therapy center “is dedicated to teaching individuals who are nonverbal how to communicate through spelling.” She then cites one of the messages purportedly generated by one of Vosseller’s nonspeaking clients, which recites the FC-friendly myth that autism is primarily a sensorimotor disorder: "We aren’t in control when it happens, our bodies just take off. It often happens for me when my sensory system is overstimulated. My body just needs to get out of there even if my mind wants to stay."
No mention of the complete lack of evidence base for S2C or of the authenticity of the messages generated through it that are cited here, nor of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
January, 2023
WBIR, local TV station in Knoxville, Tennessee
A WBIR news segment showcases a non-speaking autistic boy who types via a held-up keyboard and started a nonprofit called The Peyton Project to help non-speakers like him “find their voice.” Now a teenager, the reporter tells us, Peyton “spells out his hopes for others.” After Peyton’s mother states, “There are so many out there living in silence,” the narrator adds “So many people who are living in… [here the computer-generated word “silence” is spliced in, along with a clip of Peyton typing] just like Peyton was, all those years.” The report concludes with a brief plug for the Peyton Project.
No mention of any attempt to check in with any autism experts about any of these rather surprising claims about non-speaking autism or about the rather surprising achievements of someone with such a diagnosis.
December 24th, 2022
The New York Post
A piece by Lenore Skenazy, which Janyce critiqued here, accepts S2C and RPM as valid and repeats proponents’ talking points.
No mention of the complete lack of evidence base for RPM/S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
November 23rd, 2022
Fox 17 News, Nashville.
A news segment on a boy who purportedly communicates by typing (the video shows him typing on a held-up letterboard) and wants to study nanobiology and calculus rather than the “circles and squares and double-digit addition” that his mom says he was stuck in for “years and years and years.” Reporter Kaitlin Miller explains that the Metro Nashville Public Schools at first wouldn’t allow the held-up letterboard to be used in the screening process that determines which classes the student could take, but that after a hearing before the Tennessee Department of Education, this decision was overturned. Miller, apparently convinced this was the right decision, says that she requested an interview with Nashville Schools “to see what they’re going to do to prevent this from happening to other students.” But, Miller states, they “declined the interview request claiming they can’t go into specifics about a student due to state and federal student privacy protections.”
No mention of any attempt to check in with any autism experts about any of these rather surprising achievements by someone with non-speaking autism.
June, 2022
Spectrum Life
Starting with this article, and subsequently with this one, Spectrum Life, an autism-focused online magazine, has been reporting on the virtues of S2C.
No mention of the complete lack of evidence base for S2C or of any of the many health, education, and advocacy groups that have expressed serious concerns about it.
May, 2022
ABC News 7, Bay Area
A news segment reported uncritically on two non-speaking individuals who graduated from Berkeley. Senior Education reporter Lyanne Melendez says she sat down with one of these individuals and his mother and watched him type. “Without looking at the keyboard he taps one letter at a time,” she reports, apparently producing the message that “I want people to know that we can achieve a lot if we are able to participate.”
No skepticism expressed about whether anyone can actually type such a message, one letter at a time, without looking at the keyboard.
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