Thoughts on Father’s Day

When lockdown began, all the millennials went home.

They were told not to go home–directly told, in C’s case, by a New York City ER doc overwhelmed by patients and expecting his hospital’s ICU to be overrun. But they went home anyway.

We quarantined our returnee inside the house for two weeks. Separate Corona chair, separate bathroom (door closed before and after use!), a designated seat at the far end of the dinner table, hands off the Nespresso machine and the spoons and forks and everything else a person must touch to feed himself. It felt like an adventure.

(And yes, I’m grateful we have enough space to quarantine another human being. Wish we had enough space for all 3 grown sons, but that’s another story.)

I thought millennials went home because home feels safe, virus or no.

That was true.

What I didn’t realize is that safety is a 2-way street.

A few days ago, I spoke to a 25-year old who told me: “I haven’t let my mother out of my sight.”

As I thought about it, I realized she could have been describing C’s behavior. Only in the past few weeks has he let us out of his sight. For 6 weeks straight, neither Ed nor I left the house for any reason at all apart from a daily hourlong march (or patrol?) around the neighborhood. Every errand that had to be done, C. did, willingly, happily, without having to be asked.

He used to call it “going to the outside world.”

He would return bearing groceries, supplies, and field intelligence. How many masks, how many people in the check out lanes, the wonders of no-traffic in Westchester County. Later in the day, he would walk the neighborhood with us.

Last weekend, C. went to his first small get-together with friends since all of this began. Every one of them said they had spent the initial month of quarantine terrified they would give COVID to their parents, and their parents would die.

I’ve tried to imagine that, and I can’t.

They were terrified they would kill their own parents.

They braved this fear, and they made sure no one else killed their parents. For a young adult, this will be a formative experience, I think. Millennials: the good guys.

Happy Father’s Day!

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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.