A footnote about academics who support Facilitated Communication

Way back when, when I was first developing my language training program for people with autism (then called the GrammarTrainer, now called the SentenceWeaver), a linguistic colleague of mine recommended I get in touch with a certain psycholinguist at the University of Wisconsin. Her recommendation stemmed from the GrammarTrainer’s approach to teaching English. While the new SentenceWeaver reads prompts out loud and allows speech as well as text input, the old GrammarTrainer was entirely text and typing-based: written prompts (“Where is the circle?”) soliciting typed responses (“The circle is between the triangle and square.”).

The reason my colleague suggested I contact this psycholinguistic was that she (the psycholinguist) had an autistic son who seemed to embody the potential of autistic individuals to master language entirely through text. The boy, completely non-speaking, had reportedly learned language, at least in part, from TV captions, and was now fully fluent. He could express all sorts of sophisticated thoughts–not by speaking (he remained non-oral), but by typing them out on a keyboard.

I was instantly suspicious, but not for the reasons I would be today. Back then, I had thought that Facilitated Communication was a thing of the past. After all, just a few years back, there’d been a major exposé on Frontline showcasing experiments that completely debunked it.

What made me suspicious, instead, was that it sounded like what this fully fluent, fully conversational boy had wasn’t an autism spectrum disorder, but a movement or motor control disorder–one that so impaired his oral motor functioning that he couldn’t coordinate his lips, tongue, and vocal cavity to make intelligible speech sounds.

Little did I know, back then, that Facilitated Communication not only hadn’t gone away, but that one of the central claims made by its proponents, in fact, is that autism, contrary to everything laid out in the diagnostic criteria (both then and now), is not a social (and social communication) disorder, but a movement disorder.

These days, though, when I hear someone say that autism is a movement disorder, I automatically see a red flag for FC support. And I’ve learned of a few others as well–all of which can, and do, warp the research and/or public statements of even the most accomplished and otherwise reliable academics.

  1. Having a non-verbal or semi-verbal autistic child and being unsatisfied with how much that child has been able to communicate via the standard, evidence-based therapies.
  2. Offering up lots of warped criticisms of the standard, evidence based therapies.
  3. Getting financial support from one or another deep-pocketed, pro-FC charitable foundations (themselves tied by kinship to non-verbal autistic children).
  4. Getting support from one or another autism self-advocacy organizations (I explore why autism self-advocates support Facilitated Communication here).
  5. Publishing research claiming that autistic people only appear to be unsocial
  6. Regularly conflating non-controversial statements like “autistic people do have empathy” and “autistic people do want to connect with others” with unsupported statements like “autistic people are just as good as non-autistic people at perspective taking and Theory of Mind tasks.”

This list has become, for me, a sort of diagnostic checklist–not necessarily for true belief in FC (that may be something that characterizes few people other than those who have chosen it for their children), but for practical entanglement in the FC Industrial Complex.

I made a *HUGE MISTAKE* the other week!

I had gotten the impression that a fatally-flawed Eye Tracking study I blogged about below–the one written by Dan Willingham’s colleague at UVA that supposedly showed support for a form of facilitated communication in autism–was published in the prestigious journal Nature.

It turns out this article was instead published in a completely different publication under the Nature.com umbrella: a publication called “Scientific Reports.”

I found this out when I tried to submit a letter to Nature. Nature wrote back saying that they don’t accept letters about articles in publications other than Nature. It took me a while to figure out that there are three separate entities all involving the name Nature.

There’s Nature.com the journal; Nature.com the publisher of dozens of distinct journals, and Nature.com > Scientific Reports.

And, as it turns out, there are lots of differences between Nature and Scientific Reports. Scientific Reports accepts 56% of submissions; Nature accepts 8%. Scientific Reports charges authors thousands of dollars to publish ($5380 for US authors), and allows them input on who should and shouldn’t review their work.

Scientific Reports has a history of retractions, including, so far in 2020, of a paper claiming the sun causes global warming, one claiming that cell-phone-induced neck-bending causes people to grow horns, and one that was plagiarized from the BA thesis of a Hungarian mathematician.

I’m not sure how much Scientific Reports charges to publish letters to the editor, so as far as the letter I mistakenly wrote to Nature (as in the journal Nature) goes, I’ll do what I did with the one I wrote to the Chicago Tribune on its pro- Rapid Prompting Method piece from early January, which also went unpublished, and post it publicly

To the Editors,

I’m writing with concerns about your article “Eye-tracking reveals agency in assisted autistic communication” (Jaswal, V.K., Wayne, A. & Golino, H. Sci Rep 10, 7882 (2020).

One concern relates to the authors’ justifications for testing the agency of what they call “assisted communication” indirectly, via eye movements, rather than directly, via a message-passing test—the gold standard for establishing authorship.

In a message-passing test, the researcher prompts the subject and/or asks him a question while the assistant, or facilitator, is out of the room. The facilitator then returns and facilitates the subject’s response. If the response is appropriate, message-passing has succeeded.

The authors suggest that, in the case of non-speaking children, message-passing may fail for reasons that have nothing to do with agency. Their claim:

“Children who can talk receive years of prompting and feedback from adults on how to report information their interlocutor does not know, the essence of a message passing test.”

There are several problems with this statement. First, message-passing involves information that is unknown to the facilitator, not to the interlocutor (the researcher). Second, the statement suggests that typical three-year-olds don’t yet know how to talk with people about things that happened while they were out of the room. Third, as the study itself reports, while no participant “was reported to be able to have a ‘to and fro’ spoken conversation involving turn-taking or building on what a conversational partner had said earlier,” all but one “was reported to be able to speak using short phrases or sentences.” (What would cause these individuals to become more conversational when typing on a letter board with an index finger is left unexplored).

My other concern is the letter board, which could have been placed on a stationary stand, but instead is held up by the assistant. As we see in the article’s videos, the board shifts around significantly during typing.

A shifting board makes it hard to draw reliable conclusions about intentional eye fixations or about intentional letter selection—regardless of how high tech the head-mounted eye tracker and video processing software are.

Of course, as far as the authors go, if what you’re after is publicity for, say, an un-disclosed for-profit operation, all that matters is that you get the word out to lots of potential customers before you get scrutinized by actual peer review and ultimately retracted. It could be that spending over $5000 dollars to promote Rapid Prompting Method is a very worthwhile investment.

Especially given how much money desperate parents are willing to pay for anything that appears to boost the communicative potential of their autistic children to the degree promised by RPM.

Facilitating Un-facilitated Communication in Autism

My two hour talk on this charged topic is going live at 5:00 PM EST today, available any time after that:

https://thereadingleague.uscreen.io/programs/le-may-beals-cut-1mp4-de3af4?categoryId=24423

There’ll be a live q & a on Monday, and I’m hoping someone will bring up a paper, just published in Nature of all places, that appears to provide empirical support for a particular type of facilitated communication:

https://www.nature.com/articles/s41598-020-64553-9

I’ve had an… interesting exchange with Dan Willingham on twitter about paper:

 

Oral vs. Written Language–Two Talks on Twitter

In the last 24 hours, I’ve participated in two different but intersecting discussions on Twitter—one on phonics, the other on autism. Their point of intersection: the question of oral vs. written language.

First, Phonics

The phonics discussion was one I couldn’t help jumping into. A distinguished education professor and specialist in reading instruction dismissed someone’s linguistically accurate observations about consonant-vowel-consonant (CVC) patterns by telling them they should take a class in linguistics. I’ve taken many classes in linguistics, so I piped in as follows:
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A review of In A Different Key

I’ve just finished reading In a Different Key, a book by John Donvan and Caren Zucker subtitled “The Story of Autism.” It’s the most comprehensive, in-depth, even-handed history of autism I’ve read so far.

Published in 2016, the book begins with the first formal diagnosis—back in 1942, Leo Kanner’s “Case 1”—and proceeds through the various wrong-headed theories (“refrigerator mothers”; normal children “locked inside”; post-natal, vaccine-induced “brain injuries”) and wrong-headed approaches (institutionalization; psychotherapy; behavioral modification through cattle prods); to the panic about a growing autism epidemic as the diagnostic criteria shift and as the reported rates increase from an original estimate of 1 in 4,000 to a rate of 1 in 66 at the time of publication. (We’re now at 1 in 59).

The book ends with two recent developments. Continue reading

After 100+ autism interviews, it’s time to debrief

I’m finally coming up for air after an intensive autism project funded by National Science Foundation. We had seven weeks to conduct at least 100 interviews–mostly with parents of autistic kids and with autism-focused teachers and therapists. The unrelenting stress of those seven weeks (which also involved weekly homework, lectures, and presentations, two trips to Boston, and a boot-camp ethos throughout) reminded me of the unrelenting stress I felt during the most difficult eras of J’s childhood.

And the difficulty I found in tracking down autism parents made me wonder whether autism is quite the epidemic people say it is.

My specific target was parents of children somewhere in the middle of the autism spectrum: kids who can recognize and produce at least a few spoken and written words, but who continue to struggle at least to some extent in putting those words together into grammatical phrases and sentences.

In the end, I spoke with about 40 parents, just barely enough to meet our weekly quotas and not get yelled at. Actually, the fear of being yelled at—funny how that doesn’t fade away with age!—was ultimately a good thing, as it resulted in some really interesting interviews.

Here are my main takeaways (some of these will be familiar to anyone familiar with autism):
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Looking at the same thing at the same time with Andrew, part 2

re: shared attention and GrammarTrainer I had a funny experience a few days ago. Funny and wonderful.

I had gone to Andrew’s day program and logged him onto a new GrammarTrainer session. Then, when all seemed to be going well, I started reading my phone instead of looking at the laptop Andrew was using. (In theory, he’s supposed to use the program independently….) 

And Andrew didn’t like it !

He poked me, protested (“Huh!“), and jabbed his pointer finger at the laptop screen. I thought he must have been having trouble with a question, but he wasn’t. He just wanted me to look at the same thing he was looking at. 

I don’t think that’s ever happened before.

And see:
Syntax is not so easy
Looking at the same thing at the same time with Andrew
Looking at the same thing at the same time with Andrew, part 2

Looking at the same thing at the same time with Andrew

This may be a post only parents of autistic children and adults can really ‘get,’ but here goes.

One of the most painful aspects of autism for the parent (and no doubt for siblings and others close to the child) is the profound deficit in shared attention:

Joint [shared] attention occurs when two people share interest in an object or event and there is understanding between the two people that they are both interested in the same object or event.

Joint attention should emerge around 9 months of age and be very well-established by 18 months of age.

A 9-month old baby points. (Right? It’s been a while.)

A 9-month old baby points, and, when you point, s/he follows your finger to see what it is you’re pointing at. Parent and child look at the same thing at the same time, and they do so on purpose because people share. 

But autistic babies don’t point. At least, neither of my autistic children pointed. Nor did they react when I pointed.

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Teacher proofing and RTFM

Turns out Andrew and I haven’t been following directions. (See: Syntax is not so easy.)

I wasn’t actually aware there were directions, but now that I know I still haven’t read and/or watched them. 

This goes to one of the requirements of teaching apps–of any app–which is that people don’t RTFM

If you need a beta tester to help with that, I’m your person. 

This reminds me of a friend of mine whose husband was a composer with, she later suspected, the same learning issues their son had. 

She once told me that his studio work was a marvel of intuitive button pushing.

Request and protest

I’m making headway on my New Year’s resolutions (7,000 steps a day for me,  GrammarTrainer for Andrew, and possibly for Jimmy, too).

This morning I showed the folks at Andrew’s day program how he uses Katie’s program. They were amazed. Everyone is always amazed when they see Andrew using SentenceWeaver (must get videos loaded): thanks to SentenceWeaver, he is one of the few people on the planet who knows what a function word is.

This is a nonverbal person with severe autism. Knows he needs a function word to connect red to green when he’s saying an oval is red-and-green.

I’m still amazed myself, watching him.

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