Mysterious disappearances in the world of FC: What does it take to sustain the illusion?

Cross posted at FacilitatedCommunication.org.

A couple of weeks ago, Autism Science Foundation founder Alison Singer posted on Twitter a video of an exchange she had with Cure Autism Now founder Jonathan Shestack. The clip opens with a question from Singer:

You’ve been away from the autism advocacy world for some years, but what’s your feeling about how the definition of autism spectrum disorder has changed?

Singer was alluding to the expansion of the autism spectrum to include what was once called Asperger’s Syndrome. This expansion assigns people with a range of speaking and writing abilities—some fully fluent, others completely minimally verbal—to the same diagnostic category. Back in 1995, when Shestack and his wife, Portia Iversen, founded Cure Autism Now (now Autism Speaks), autism and Asperger’s were distinct diagnoses.

Shestack, answering Singer’s question, implicitly raises another:

I feel like when the diagnosis got collapsed the identity of my son, who is super-duper autistic, you might say profoundly autistic, got sort of lost in the shuffle and people were wondering like does he have any special skills, how does he feel about this, and my concern was always like is someone going to make sure that he’s warm and takes him to the bathroom and has enough to eat and while I think all this awareness is really good, I feel like he and those like him, and there are a lot, got sort of lost in the shuffle and I feel sad about and I have to probably talk about that more.

Indeed he does. In particular, he’s left many of us wondering about whatever happened to Dov Shestack.

Dov, the son of Jon Shestack and Portia Iversen, is one of the two sons featured in Iversen’s 2007 autism memoir Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism. Both Dov and the other titular son, Tito Mukhopadhyay, purportedly had high levels of language, literacy, and other academic skills that were unlocked by a form of facilitated communication invented by Tito’s mother, Soma Mukhopadhyay. This variant of FC, known as the Rapid Prompting Method, has been proliferating around the country and mutating into new variants ever since.

But while Soma and Tito are still in action, the last public sightings of Dov date back to 2015.

Nor is Dov not the only FC star who’s disappeared. In the realm of traditional FC, there are Sharisa Kochmeister and Amy Sequenzia. Then there’s Carly Fleischman, whose typing has never been publicly acknowledged as facilitated but, in the one video in which we see her typing more or less spontaneously, has all the trappings of RPM-style facilitation: slow, index finger typing; a designated assistant sitting next to her, watching that index finger, and prompting her; and some significant reliance on word prediction.

All of these individuals—and a few other once-prominent FC users—have disappeared, mostly under mysterious circumstances.

In some ways, the least mysterious disappearance is that of Sharisa Kochmeister. Kochmeister, who was assessed via FC  to have a genius-level IQ , earned an honors degree in psychology and sociology from Denver University, served as president of the Autism National Committee and on the executive committee for the Colorado Developmental Disabilities Council, and appeared in the autism documentary Loving Lampposts. Her disappearance dates back to 2015 and was reported in the Denver Post. Her father, who served as her sole facilitator, was caught on video pushing her at a doctor’s appointment. She was promptly removed from his custody and has been kept in a Colorado facility ever since. But well before 2015, Kochmeister had actually already retreated from public view. Her last blog posts date back to 2008; her professional activities, as reported on her LinkedIn page, end in 2010.

At least as intriguing is the disappearance of Amy Sequenzia. Sequenzia, also active starting in the early 2000s, was a contributor to the Autistic Women & Nonbinary Network and to an FC anthology (Typed Words, Loud Voices), and also the (credited) author of a poetry collection (My Voice: Autism, Life and Dreams). She also served on the board of the Autistic Self Advocacy Network, on the board of directors at the Florida Alliance for Assistive Services and Technology, and (like Kochmester) on the Autism National Committee. She has presented at numerous autism events and addressed the Florida Legislature.

But in late 2018, autistic advocate Caroline Hearst expressed some concerns on Twitter about (1) who was authoring Sequenzia’s messages and (2) how she was being treated by her handlers:

Shortly after that, Sequenzia essentially vanished. By early 2019, the Autism Self-Advocacy Network’s list of board members no longer included her name; Ollibean, the disability website, stopped carrying the regular blog posts that were credited to her. The last of these, from April 18th, 2019, looks like this:

If you click on “Read More”, you see a 500+ word post that ends with the words “Being silent is not the same as not feeling.” And what follows this post is years of total silence.

But then suddenly this January, after a nearly four-year hiatus, that changes—sort of. Two new posts appear: one on January 12th, and another on January 13th.  Unaccompanied by images, they look like this:

That’s it. Aside from what look like meaningless strings of numbers and letters in the both the blog titles and the first lines of the posts, there’s nothing more. There are no other lines of text in these posts. And there are no updates whatsoever since they were posted this January.

What about Carly Fleischmann? Featured in 2012 on ABC’s 20-20, and the (credited) co-author of the 2012 book Carly’s Voice: Breaking Through Autism, Fleischmann disappeared not once, but twice.  The first disappearance, according to multiple reports including this one from AutismAwareness.com, occurred in early 2014 after Fleischmann underwent electroconvulsive therapy (ECT). This purportedly led to significant language loss, as seen, for example in this twitter post:

It was over two years before Fleischmann returned to the public eye. And return she did. By 2017, she had a YouTube channel where, via pre-recorded questions (cheeky content in a text-to-speech monotone), she interviewed celebrities. This shtick proved so popular that in 2018 she made two TV appearances with Stephen Colbert (on HBO’s Night of Too Many Stars and on The Late Show).

But in early 2019 Fleischmann disappeared again. This occurred immediately after the following developments:

• a post from her Facebook account accusing her father’s boyfriend of assaulting her

• another post, appearing both on Twitter and on Facebook, saying that she had taken down the first post because of safety concerns

• another post on Twitter saying that her account had been hacked

It’s been radio silence since then. Nothing on Facebook, nothing on Twitter, nothing on her YouTube channel, and nothing on TV.

Other disappearances, if not as intriguing, are equally mysterious. There’s Sue Rubin, mostly seen typing, RPM style, on a held-up keyboard; Ben Alexander, a classic, touch-based FC user; and Emma Zurcher-Long, an RPM user and erstwhile client of Soma Mukhopadhyay.

Rubin, like Kochmeister, has obtained genius-level IQ scores via FC. She was featured in the 2004 documentary Autism is a World. In 2013 she graduated from Whittier College with a BA in Latin American History. While Rubin has remained active on Facebook and has a stub page promoting her consulting business, her last public appearances, according to her one other website, date back to 2013.

Ben Alexander made headlines in 2016 in an AP story about his matriculation at Tulane University, where, with wrist support from his father, he was majoring in English with a 3.7 GPA. Alexander made a somewhat smaller splash in the Tulane News in 2018 when he graduated. Five years on, there’s been no more news.

Emma Zurcher-Long entered the public eye in 2017 when she was credited with directing the movie Unspoken at age 14. Her last blog post, after years of blogging, went up in late 2017; her last post on Twitter and her last public video date back to 2019. This, despite the fact that Unspoken was screened by the Slamdance Film Festival in 2021.

Other disappearances include Lucy Blackman of Australia, Alberto Frugone of Italy, Mark Gordon of Canada. As Charles Hart reports in A Parent’s Guide to Autism, Artie Shaslow, the son of Nobel Prize winning physicist Arthur Shaslow, stopped communicating after the death of his mother, his only facilitator (p. 175).

All this raises questions of what it takes to sustain the illusion over the long haul. Parents age and die; before that, kids age out of school. School is perhaps where parents—all parents—feel the greatest pressure for our kids to compare favorably with their peers; where we sense the greatest scrutiny from our peers about how our kids stack up. Perhaps for some parents—regardless of diagnosis or lack thereof—it’s enough if everyone else thinks their children are geniuses, whether or not they truly believe this themselves. Later on, as kids disperse and bigger issues loom, all of this matters less and less.

So let’s return to Dov. What happened to him?

Here’s where he was back in 2003:

Dov Shestak was one of [Soma’s] first students, since it was his parents, Portia and Jon, whose foundation brought Soma to the United States, but they never expected this… After years of trying nearly every technique available for autistic children, his parents were astonished. Within six weeks of working with Soma, suddenly came full sentences, complex thoughts and words spelled correctly…They learned that Dov is interested in religion and history and is a surprisingly good mathematician… We asked Dov how he had learned so much when no one had formally taught him… He told us that all those years when people thought he was lost in his own world, he was actually listening to everything around him.

Compare this to the Dov described by Jon Shestack 20 years later: a profoundly autistic adult for whom the greatest priorities are food and shelter.

The above excerpt is from a transcript of a 60 Minutes segment entitled “Breaking the Silence”, hosted by Vicky Mabrey. In Strange Son, Iversen recounts how she and her husband leveraged their media connections to bring about what turned out to be a tremendous publicity boost for RPM. The segment showcased Soma, Tito, and the miracle of RPM, and included words of wisdom from neuroscientist Michael Merzenich.

MABREY Do you think that Tito is just one in a million?

DR. MERZENICH I think there could be thousands of–maybe tens of thousands of Titos out there.

MABREY Scientists will soon find out if that’s true. For the past year, Soma’s been testing her homegrown methods on a small group of children at the Carousel school in Los Angeles, the school attended by Jon and Portia’s son, Dov.

Indeed, the miracles experienced by Dov back then extended to his fellow classmates at the Carousel school, all of whose intact language, literacy, and academic skills were being unlocked by Soma’s RPM.

But we never learn what scientists find out about how many Titos there are. And we never find out what happened to Dov’s classmates.

Nor is it clear whether the Carousel School is still practicing RPM. On one hand, their website still mentions Informative Pointing, Portia Iversen’s variant of RPM, as one of its many methods of communication. In describing the variety of communication tools it uses, it also references (linking to video that was removed long ago) RPM user Dylan Barnach:

Here’s an article about how the iPad has helped 16-year-old Dillan Barmache, who has autism and is non-verbal as part of a new campaign by Apple for April’s Autism Awareness.

On the other hand, when I twice submitted a form on the Carousel website inquiring about RPM, I received no reply.

There have been rumors that Jon Shestack and Portia Iversen no longer think that RPM has unlocked what Iversen, in Strange Son, called Dov’s “intact mind.” But Shestack’s reply to Alison Singer is the closest we’ve ever gotten to a public admission.

As I wrote in an earlier post on Portia’s memoir:

No one who once believed in miracles is obligated to keep doing so. But those who’ve persuaded thousands upon thousands to believe in miracles that they themselves have abandoned have incurred a heavy debt. Willing themselves to pay it off: now that would be truly miraculous.

Two unsung heroes of higher-level thinking

 Every year when teaching my Autism, Language and Resaoning class at Penn, I have another chance to delve into cognitive science. And each time, I'm reminded of how much is involved even in apparently "meaningless" tasks like memorizing and reproducing complex shapes like (excuse the low fidelity) this one:

Unless you have a photographic memory, incorporating this figure--or at least as much as possible of it--into long-term memory involves a rather high-level skill: coming up with some sort of organizational structure. Perhaps it's a house with a weathervane on top lying on its side with its base to the left and a dormer window on the top, marked with an X, an incomplete copy of itself on the left, and a button-like porthole to the right, and flanked by crosses along its straightest edges. It's much less fruitful to simply memorize it as a bunch of specific lines at specific angles.

This is similar to another skill often dismissed as meaningless: speed. As I've noted in connection with math tests, many people assume that speed tests (especially multiple choice speed tests) measure only rote knowledge. But they’re also a great way to measure conceptual understanding. Performance speed reflects, not just rote recall, but also efficiency, and efficiency, in turn, is a function of reasoning, strategizing, and number sense. 

When it comes to our computers, we place high value on speed and memory capacity; perhaps for the same reason, we increasingly dismiss these same things in humans. But they correlate, not just with those skills that are being supplanted by computers, but with higher-level skills that (CHAT-GPT aside) still matter for the foreseeable future.

Word prediction on steriods and the authorship questions it raises

I've been thinking lately about the future of word prediction (and phrase and sentence prediction). We’re at a point now where, without the user typing a single letter, but instead just selecting predicted words, syntactically and semantically coherent messages can emerge. This is obviously a huge boon for anyone who needs help typing and actually knows the meanings of the predicted words and what they want to say with them.

But what about those who don’t? What about all those individuals with autism who use AAC not because they have problems with motor control, but because they have problems with language? How do we know that someone isn’t simply selecting words at random that they don’t understand? Worse, given how text-prediction software can adapt to the styles and content of particular users, how do we know that the AI hasn’t been trained through earlier sessions that were mediated through on or another form of facilitated communication to output messages that originated with a facilitator—even when that person is no longer in the room?

The answer, as with the more standard, immediate cases of FC, is message-passing testing.

But while the essence of a message-passing test for text-prediction is still the same, there are some interesting differences—and text-prediction tests might actually be easier to conduct.

That is, if everyone agrees that the autistic person's assistance is entirely through text-prediction, there’s no excuse for any potential human facilitators to be in the room or within cueing range. Having removed these humans, a tester might safely ask any questions whose answer are known to the testers, or even questions whose answers aren’t known to the testers. Not just questions about transient circumstances like “How many fingers am I holding up?” and “What color is this shape?”, but also questions that tap into general background knowledge (“What day is it today?” “Who is the president of the United States?”) or, even, open-ended questions like “What would you like the world to know about autism?” 

Even if some of these questions have been anticipated and rehearsed with a human ahead of time, the typist would still have to have acquired enough language to comprehend each specific question when it was asked. Indeed, this would be an interesting way to probe how much the person can comprehend--independently of how much they can express.

The NIH falls for FC: How did this happen and is it reversible?

Some six weeks ago, the National Institutes of Deafness and Communication Disorders (NIDCD) sponsored a conference entitled “Minimally Verbal/Non-Speaking Individuals With Autism: Research Directions for Interventions to Promote Language and Communication.” The NIDCD is a member of the U.S. National Institutes of Health, and so is funded by Congress. All of us citizens and taxpayers, therefore, should be concerned by the fact that this event served—albeit only in part, and mostly indirectly—to promote facilitated communication. It did so primarily by showcasing two “non-speaking” autistic individuals who type out grammatically well-formed, syntactically sophisticated, vocabulary-rich messages on keyboards: messages that show no evidence of the language learning impairments associated with non-speaking autism.

Once the conference’s program became available, several autism experts expressed concern that an FC user was listed as a panelist, that the event featured “S2C proponent Vikram Jaswal presenting a flawed study of S2C users”, that the NIH was “giving credence to FC”, and that the only other representative of non-speaking autism was someone who had told the world, years ago, “I can talk. I can even have a conversation with you.”

(S2C, or Spelling to Communicate, is a variant of facilitated communication very similar to another variant, the Rapid Prompting Method).

The public airing of these objections apparently hit a nerve. Judith Cooper, the head of the NIDCD and one of the three conference organizers, opened the event by admonishing presenters and participants to be “respectful” and not return to “any past debates.” She added:

I am personally appalled and somewhat saddened about some of what is appearing in social media related to our media and this sort of attack behavior will not be tolerated here.

Reminders to be respectful and not get into “past debates” were repeated by Dr. Cooper and others over the course of the two-day conference.

Videos of the conference have been archived and you can watch them here and here. In what follows, I’ll highlight the ways in which the event promoted facilitated communication—primarily a variant of FC known as the Rapid Prompting Method (RPM)—and then say a bit about the aftermath and how far some of this might go.

The first session, the “Panel of Stakeholder Perspectives”, opened with a young man who has a long history of communicating via facilitated communication and the Rapid Prompting Method (RPM): a history that Dr. Cooper and others in charge could easily have looked up. This person, who (as it later became clear) had someone sitting next to him, pushed a button on his computer that read out a pre-recorded message.

The next presenter was Matthew Belmonte, the sibling of an RPM user and a long-time supporter of RPM. Belmonte acknowledged that sometimes RPM “clearly” lends itself to facilitator influence, but also stated that it sometimes enables authentic communication. (If you peruse this website’s Research pages, you’ll see that there’s no evidence for the second claim). The question, Belmonte stated, isn’t whether RPM is valid, but “under what circumstances.” He then cited moments in which he and his brother shared memories: during such moments, he assured us, his brother’s messages were “clearly valid.” What’s needed, therefore, is to “reconcile the very many positive case reports” of successful RPM with what Belmonte characterizes as the “binary tests of message passing” that may not be sensitive to “subtle issues.” (He doesn’t elaborate on what those are). The answer, Belmonte suggests, is what would amount to indirect validation studies. He cites Vikram Jaswal’s highly flawed eye tracking study.

The next few presenters endorsed the importance of being “respectful.” They alluded, respectfully, to the first presenter, raising no concerns about whether the recorded message was authentically his.

The next session, “Novel intervention approaches for minimally verbal/non-speaking individuals”, was much more evidence-based. It included several fantastic presentations, among others, on augmentative and alternative communication and treatments for speech apraxia by Janice Light, Karen Chenausky, and Howard Shane. Dr. Shane later resigned from the NIDCD group in protest, not wanting to be associated with the event’s platforming of FC pseudoscience.

In the Q & A that followed, Belmonte reappeared, interjecting the FC-friendly assertion that there’s been too much emphasis on autism as a social communication disorder and not enough attention paid to sensorimotor problems.  (FC depends on a redefinition of autism either as some kind of motor or sensorimotor disorder—there’s more about that elsewhere on this website).

Day 2 of the NIDCD event returned to evidence-informed presentations on research design and outcome measures, followed by a Q & A by Stephen Camarata and Amy Lutz. Dr. Lutz (who also spoke in the Q & A at the end of the discussion) pointed out that the presentations had overlooked a key factor in severe autism: intellectual disability. She noted that the insistence on an intellectually intact mind is one of the factors behind the resurgence of facilitated communication. She also emphasized the importance of ensuring that interventions are evidence-based and of empirical testing to ensure that individuals are authoring their own messages. Dr. Lutz deftly raised these concerns ways that didn’t contravene the warnings about “respect” and “past debates.” (The debates about FC, and the evidence against it, date back to the 1990s).

Following Dr. Lutz’s caveats, however, was a final session that, effectively, completely defied any concerns about intellectual disability and evidence. Its agenda, in part, appeared to be to drive home the notion that non-speaking autistic individuals have fully intact minds: in particular, intact vocabularies, intact syntax skills, and intact literacy skills.

In this final act, Vikram Jaswal, an RPM promoter and the author of that highly flawed eye-tracking study, moderated a discussion with the two non-speakers mentioned above. One of them—the young man who spoke in the opening panel—is an actual non-speaker who has a long history of being facilitated through RPM. I’ll refer to him as an “RPM user”, as there is no solid evidence that he’s “graduated” from RPM and can type spontaneous answers to questions with his facilitator outside of auditory or visual cueing range.  The other is an individual who is non-speaking only in the sense that she mostly communicates by typing. As she herself has attested, she is not a non-speaker as the term is generally understood: she’s able to engage in spoken conversation. I’ll refer to her, accordingly, as a “non-speaker”, scare quotes included. It’s worth adding that all three individuals are associated with the pro-FC organization Communication First: Jaswal, through his wife (the Executive and Legal Director); and the “non-speaker” and the RPM user, through their respective positions as Chair of the Board of Directors and as a member of the Advisory Council.

Either the conference organizers, Judith Cooper, Connie Kasari, Helen Tager-Flusberg, were aware of none of this, and/or, as they suggested later, what they saw through their eyes when observing the RPM user and the “non-speaker” in advance of the conference allayed any concerns. Either way, watching the conference organizers watch these individuals as they typed, I cringed at finding them so impressed, and so genuinely moved, by what they apparently considered to be authentic messages authored by authentic non-speakers providing an authentic window into the otherwise elusive perspectives of non-speaking individuals with autism.

A still image from the publicly available video recording of the NIDCD conference.

As this session proceeded, Jaswal directed questions to the “non-speaker” and the RPM user, and they responded in turn. Generally, the RPM user either

(1) tapped out a message (sometimes typing letters and sometimes selecting from a bank of pre-selected or predicted words), which his device read out word by word, or

(2) pushed a button that outputted a pre-recorded message.

But if you watched the video carefully a few times, starting at the 2-hour mark, you’ll see something odd happen that suggests a mix-up between tapped-out and pre-recorded messages.

First, the RPM user taps a half dozen times, apparently selecting words, and then hits a button that plays out this message: “I echo what [the “non-speaker”] is saying. I would add attitudes to listening are important.” (The computerized speech is hard to decipher in places, so this and later transcriptions represent my best guesses). As soon as this message starts playing, the hand of another person—presumably a person who’s been sitting next to him this whole time—suddenly enters the screen and pushes the RPM user’s hand away, quite abruptly.

A still image from the publicly available video recording of the NIDCD conference.

That hand then starts tapping on various buttons around the screen, and the recorded message stops playing. Next we hear a voice say, “Sorry, we’re having a volume issue.” (There was actually no indication of any problem with volume). The hand hits a few more buttons and then the voice says “Go ahead, try now” and the RPM user starts tapping again, about a dozen times, mostly at the same spot on the screen. The voice makes a “sk” sound—perhaps the beginning of the word “scroll”—and then, after a few more keystrokes, the hand reappears and hits a few more buttons, causing the screen to scroll down a bit. The voice then says “Go ahead, start at the top.” At that point, Dr. Kasari, shaking her head sympathetically, says “Technology… I mean it’s an issue.” The RPM user taps five more times and then the recorded replays: “I echo what [the “non-speaker”] is saying. I would add attitudes to listening are important.” But this time it keeps going:

I only agreed to participate after I got to talk at length with the coordinators. And establish a relationship helped. Without these accommodations, we are at a later disadvantage. We have limited exposure to the meeting format and we have not much time to digest the science without the materials ahead. It takes longer to type, so it is highly unlikely we will be able to time with the conversation. It creates stress, which can lead to dysregulation, which can reinforce the idea that we are not equipped to participate. If we have the opportunity to plan well, we would be fine.

Even with word prediction and/or a word bank, it would take well over five taps to generate this many words, and that raises a number of questions about just what was going on both on and off screen.

In their concluding remarks, the three organizers—Judith Cooper, Connie Kasari, and Helen Tager-Flusberg—repeatedly praised the two “non-speaking” presenters for their courageousness and stamina. Dr. Kasari also made it clear that she had spent significant time with each of them (she didn’t specify whether this was through Zoom frames or in person) and could vouch for their authenticity, their ability to communicate spontaneously, and their senses of humor. Later, on Twitter, Tager-Flusberg addressed the conference’s critics:

I found it surprising that someone with two degrees in psychology would fall for the kind of psychological fallacy normally covered in introductory psychology courses (naïve realism, AKA seeing is believing).

I also found it surprising that someone who is well aware of the importance of joint attention in language learning, and of its rarity in severe autism, wouldn’t be more skeptical of the sophisticated language typed out by the RPM user. Instead, she claims that her recent papers find that joint attention isn’t necessary for language acquisition in minimally verbal individuals.

Interested readers are invited to see if they can locate any such papers.

On several occasions during the conference, both Dr. Kasari, an expert in interventions in young children with autism, and Dr. Tager-Flusberg, an expert in language acquisition in autism, remarked on the amazing heterogeneity of non-speaking autism. Their implication, presumably, was that only a small fraction of non-speakers with autism are capable of the linguistic output produced by the two (“)non-speaking(“) participants. If most autistic non-speakers have somehow mastered this much language, that would be much more academically problematic: it would overturn decades of research into autism and language acquisition, including much of their own research.

So I’m curious what happens if Drs Tager-Flusberg and Kasari learn that practitioners of S2C, a close cousin of RPM, are claiming a 100% success rate extracting complex language from severely autistic kids, and 100% success, as well, with Downs Syndrome. Consider, for example, S2C practitioner Dawnmarie Gaivin, President of the Board of the Spellers Freedom Foundation. Ms. Gaivin stars both in J.B. Handley’s S2C miracle cure memoir, Underestimated, and in the movie Spellers, based on that memoir. Given all this exposure, perhaps what she says in a recent interview (at just past the 16-minute mark) will eventually reach the ears of Drs Tager-Flusberg and Kasari:

I haven’t met a single person nor has my mentor, previous mentors or any of my colleagues met a single person who actually meets a cognitive disability diagnosis once given this reliable method of communication... I even have multiple students in my practice with Downs Syndrome my practice and none of them have an intellectual disability either. So far it’s turning out to be Apraxia with them as well.

But here’s the question (and at this point I really don’t know the answer):

Just how extraordinary does a claim need to be for “observation is the best evidence” to become as transparently ridiculous as it is to people watching a magic show?

Another opportunity lost to vague language

If you want to legislate reform, you need to be extremely specific about what must change. Any vagueness in your language will inevitably only enable current practices. Consider a recent bipartisan math initiative to improve math instruction in Colorado. As an article in Chalkbeat reports, 

The bill does not define “evidence-based,” instead deferring to the state education department to highlight curriculum and instructional programs that experts believe will best serve students.

Good luck with that.

Same goes for similarly (and systematically) vague Common Core standards.

Your children are not your children

 Your children are not your children.

   ...

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
... 

--Kahlil Gibran

So opens Judith Rich's 1998 book, The Nurture Assumption. Assailing trends still current in the Parenting Advice Industry, this book revolutionized my thinking about parenting over 15 years ago. Recently, I've found myself thinking about it anew.

Reviewing a series of studies showing how (barring serious abuse and neglect) identical twins raised together are no more similar than identical twins raised separately, and how adopted siblings are no more similar to one another than are other, unrelated children, Harris draws the following conclusion:

Children would develop into the same sort of adults if we left them in their homes, their schools, their neighborhoods, and their cultural or subcultural groups, but switched all the parents around.

I've looked around at some of the critical reviews of Harris' book, and, so far as I can tell, no one has cited facts that refute this finding.

What does it mean? To the extent that nice parents have nice kids, or aggressive parents have aggressive kids, or, say, parents who read a lot have kids who read a lot, these may simply be traits that are passed along genetically.

Of course, we parents would prefer to think we have more influence over our kids than simply providing them with unconditional love and stable environments and decent peer groups and rich educational resources. And, of course, the Parenting Advice Industry would prefer for us to think this as well. 

We'd all also prefer to take credit for those things about "our children" that make us most proud. An aunt of mine once told me about how, after her first child was born--a calm, engaged, happily obedient girl--she looked around at all the other parents around her, with their so much more emotionally unstable, unhappily defiant children, and thought to herself, "I'm a parenting natural!"  Then she had her second child and completely changed her mind about that.  Good for her to have had that revelation; not everyone does.

Indeed, while The Nurture Assumption got a lot of attention those 16 years ago, how many people still talk about it now?

What authorship tests have shown us about RPM and S2C

(Cross-posted at FacilitatedCommunication.org)

For outside observers, possibly the biggest problem with Rapid Prompting Method (RPM) and Spelling to Communicate (S2C) is that practitioners unanimously resist validity testing. This, quite naturally, raises questions. Why is not one single practitioner or family member concerned and/or curious enough about authorship and communication rights to seek out rigorous authorship testing—even with neutral investigators they don’t consider antagonistic? Why is not one single RPMed/S2Ced typer interested in proving definitively to the general public that it’s really him/her/them typing?

Such refusals, of course, have blocked both the implementation and the publication of rigorous authorship tests, leaving the world with no peer-reviewed evidence that might validate or invalidate a methodology whose stakes, when it comes to the communication rights of some of the most vulnerable people on earth, could not be higher.

But while no authorship tests of RPM/S2C have appeared in peer-reviewed journals, a half dozen such tests have been described in other publications, including some that are FC-friendly. The earliest examples appear in Portia Iversen’s 2007 pro-RPM memoir Strange Son.

Iversen, in the course of the last decade, has more or less disappeared from the autism scene. Rumor has it that she no longer uses RPM (or what she subsequently called “intentional pointing”) with her non-speaking autistic son. But Iversen is the person most responsible for introducing RPM to the U.S. (via its founder, Soma Mukhopadhyay) and for promoting it around the country (see Janyce's recent post). And while Strange Son, written as it is by someone desperate to believe that RPM has unlocked her child’s “intact mind”, is highly unreliable when reporting on purported evidence for RPM, it is much more reliable when it (perhaps unwittingly) reports on evidence against it.

The essence of FC/RPM/S2C authorship tests are questions whose answers are unknown to the facilitator but known to the facilitated person (assuming that the facilitated person is operating at linguistic and cognitive levels consistent with their facilitated output). An authorship tester might, for example, ask about something that the facilitated person experienced while the facilitator wasn’t around. These sorts of questions contrast with questions about public facts (current events, history, geography): questions whose answers the facilitator, depending on her education, may already know.

One example of an authorship test failure, then, is when the facilitated person is able to type out answers to general factual questions, but not to questions about what happened during parts of the facilitated person’s day that the facilitator didn’t also experience. And that, indeed, is exactly what we see happening with Iversen’s son Dov.

Message passing failure, example 1:

When it came to facts, responses came easily for him. But personal communication was a different story. Dov often couldn't answer simple questions accurately about what had happened to him, such as whether a therapist had worked with him at school or if there'd been a birthday party, or if he and Maria had stopped at McDonald's on their way home (p. 322).

Other potential message-passing questions are those that inquire about a desire that the facilitated person has that (1) is something the facilitator isn’t able to deduce from prior behavior and (2) can be verified by the person’s subsequent behavior. Here, too, message passing fails.

Message passing failure, example 2:

Despite being able to do math and answer academic questions, and at times being able to tell us what he was thinking or feeling, when I asked Dov what he wanted to eat for breakfast, he might type out eggs and then refuse eggs, then type out pancakes and refuse pancakes. Even a response of yes or no was not always reliable. (p. 323)

Iversen also reports on what amounts to similar message passing failures by RPM founder Soma Mukhopadhyay and her son Tito.

Message passing failure, example 3:

One day some years back, when no one believed in Tito's intelligence and the whole world seemed against them, R.G. [Tito’s father] took Tito out for lunch and when they returned, Soma asked Tito what he had eaten. Later she learned from R.G. that Tito had given her the wrong answer—a food he had eaten in the past but not with his father that day. This alarmed Soma deeply. People already doubted her son and thought she was crazy.  If Tito couldn't answer a simple question like what he'd had for lunch correctly, there could be no hope of convincing anyone of the authenticity of his communication. (p. 123)

Soma then decided that she should only ask questions that she could be sure Tito was answering correctly—a policy that she extends to all her RPMed students and that effectively rules out message passing tests.

But researchers at Michael Merzenich’s lab at UCSF, apparently unaware of Soma’s policy, took it upon themselves to run Tito through a message-passing test of their own. They “read him a story with Soma out of the room”. And, as Iversen reports, “He couldn’t answer a single question about it.”

Message passing failure, example 4:

Tito could not tell them what the story was about at all, even when Soma prompted him. And when they gave Tito hints like “What color were the cat’s pajamas,” he gave answers that were technically correct but not specific, like “A color of the rainbow.”

I decided to see if I could get Tito to answer anything at all about the story. What kind of story was it? What category did it fall under? Was it a newspaper article, a poem, a short story? Tito could not answer. I stepped out into the hall with Tito and Soma and explained that if Tito was kidding around and really knew the answers, he should say so because this was important. I asked Tito if he understood and he said yes. But still, he could answer nothing.

 (p. 244-5)

Tito’s inability to answer specific questions about a story that his facilitator had not read contrasts with his ability to answer general questions about philosophy, a topic where his facilitator could easily be the one dreaming up the responses (despite Iversen’s inability to detect how she might have cued them):

I recalled when we were at Courchesne's lab and I'd watched in fascination as Bill Hirstein and Tito carried on a lengthy conversation about philosophy. I remembered noticing how Soma was sitting across the room. Soma would urge Tito on, with abrupt verbal prompts and sweeping gestures. But there was no way she could have signaled Tito to produce the kind of complex, unpredictable, naturalistic conversation he had with Bill Hirstein that day. So why couldn’t Tito answer a single question about a simple story that had been read to him now? (p. 245)

In reporting on and musing about these failures of RPM, Iversen shows an honesty and open-mindedness that has quickly disappeared. Only one RPM parent has ever agreed to cooperate with researchers in rigorous authorship testing whose results would be published in an academic journal. The resulting study, discussed in a 2020 article in Spectrum News, is yet another example of message passing failure.

Message passing failure, example 5: The study “found evidence for facilitator influence” and “no evidence that [the rapid prompting method] is a valid form of communication.”

This study, as Spectrum News reports, was never actually published—except in summary form in Spectrum News. Shortly after it passed peer review at the Journal of Autism and Developmental Disorders, the pro-FC organization United for Communication Choice got involved. The parent filed an ethics complaint with the university involved (the University of Georgia) alleging that, as Spectrum News reports, “her identity had been compromised because she had told others in the rapid prompting community that she was participating, and her son turned out to be the study’s sole participant.” Ultimately, proponents succeeded in blocking publication, though not because of this allegation. Rather, the university “cited various minor lapses, including an expired ethics certification for one of the study’s researchers.”

S2C, a derivative of RPM whose proponents have embraced the same “don’t test” mentality, has also had its case of published message-passing failure. You can read about it in a memorandum filed in September, 2022 by a U.S. district judge for the Eastern District of Pennsylvania. The memorandum is for a judgment in a lawsuit in which S2C parents sued the Lower Merion, PA school district for not hiring a trained “communication partner” to use S2C with their son (A.L.) in academic settings. The document recounts, among other things, what happened when three of the child’s teachers visited the child’s S2C clinic to observe him being facilitated.

Message passing failure, example 6:

Ms. Van Horn [one of the teachers] explained that she prepared questions for the session based on a mid-term being administered in A.L.’s U.S. history class. A.L. and his communication partner began working through the short-answer and multiple-choice questions on the letterboard, but “he wasn’t getting the correct answers” and seemed “flubbled”—i.e., he seemed anxious responding to the questions. A.L.’s communication partner asked for an answer key, and “[t]hen the answers were coming out correctly.” Ms. Van Horn was troubled by what she observed, particularly by the fact that A.L.’s behavior and the communication partner’s demeanor changed once the communication partner knew the correct answers.

In other words, S2C failed until the facilitator knew the answers.

Noting that “the most compelling pieces of evidence are the District’s personnel’s first-hand observations of A.L. using S2C,” the judge ruled against the parents.

A similar sort of message passing failure appears in another published account, this one attributed to an RPM user,

Message passing failure, example 7:

I have only had one instance of someone in an authority role disbelieving that I was not being prompted. She taught algebra, and had a hard time understanding why my paraeducator’s fear of math would impact my ability to answer questions. But it did, because the letterboarding experience is so reliant on a positive relationship between the speller and their communication partner. I rely on that person to stay calm and regulated so that they support me in being that way too. If someone is freaking out or is upset because their anxiety is revving up, it really affects my own anxiety level, and I have a hard time focusing. 

In that math class, we found an easy solution: another para swapped in for algebra, and it was great because she was a math geek and could think up ways to ask me questions which could be answered with a letterboard that she embellished with calculus symbols. After the teacher saw me getting assignments done with the other para, she stopped wondering about my abilities and started giving me harder questions. 

In other words, RPM failed when the facilitator didn’t know the answers to the algebra problems.

Tellingly, this account concludes with:

How someone can deny that I am competent and spelling on my own is bewildering to me.

Clearly, for those involved in producing this piece, the circumstances are no more damning than the message-passing failures recounted by Iversen were for her.  

I can’t help wondering, however, whether the authorship failures in Strange Son, and the seeds of doubt they may have sown in Iversen’s mind long ago, are one reason why Iversen, the person who introduced Soma to this country, may have eventually abandoned RPM, “intentional pointing”, et al. At the very least, Iversen found those authorship failures concerning enough to share them with her readers and wonder out loud about them. It would be nice if today’s proponents would consider following in those footsteps.

Further reading

Iversen, Portia. (2006).  Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism. Riverhead.

https://www.facilitatedcommunication.org/blog/strange-science-in-iversens-book-strange-son

https://www.facilitatedcommunication.org/blog/truth-will-out-review-of-portia-iversens-strange-son

https://catherineandkatharine.wordpress.com/2021/02/23/strange-things-about-strange-son/

https://www.spectrumnews.org/features/deep-dive/how-one-communication-tool-may-fail-some-autistic-people/

https://www.facilitatedcommunication.org/blog/what-schools-can-learn-about-s2c-from-the-lower-merion-school-district

https://www.facilitatedcommunication.org/blog/another-victory-for-science

https://www.spectrumlife.org/blog/niko-boskovic-letterboarding-leader