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.

Facilitating communication with Dan Willingham

I’ve long respected Dan Willingham’s work, but I’m concerned about a study he tweeted favorably about on twitter this week.

Possibly_explosively_important

I and others tweeted some criticisms, and Dan posted a rebuttal on his blog. In this post, which I’ll also share on twitter, I’m going to respond, point by point, to that rebuttal.

First, a few notes about my respect for Dan and his work. When his first book came out, I gave it a 5-star review on Amazon; I linked to an article of his on phonics here just 3 months ago; and I’ve had cordial, even friendly, exchanges with him over the years.

However, the study Dan cited has raised red flags for me. Its object of investigation—Rapid Prompting Method—is similar to a discredited method called “Facilitated Communication” (FC). Both have been used with minimally-verbal children with autism, and both are things I’ve blogged about, most recently here.

RPM has never undergone the rigorous testing that FC has, and a number of us, long familiar with the litany of non-rigorous tests, anecdotes, and unsubstantiated claims that purportedly support RPM, took a look at who was involved in this study and immediately had concerns.

One concern: the conflicts of interest of the first author, Vikram Jaswal. First, there’s his long-time collaboration with the person who runs the clinic, whose teaching method (a form of RPM) the study investigated and drew favorable conclusions about. Second, there’s the fact that this method is used with Jaswal’s autistic daughter. From an article in the Washington Post:

Jaswal_RPM_daughter

Another concern: Jaswal’s collaborator, whom various indicators suggest was also the assistant overseeing the experiment. She–I’ll avoid using her name–has a history of claiming credentials she did not have, including in her dealings with paying clients: dealings relevant to the questions addressed by the experiment.

Unimpressed with our remarks, Dan ultimately tweeted:

piing_me

Soon a number of threads spun out containing discussions of the study’s methodology and data, including this one from @24shaz. @angelrabanas analyzed one video in detail and posted her analysis on YouTube.

So I pinged Dan, and a day or two later he notified us that that he’d put up a post on his blog in response entitled “Responding to a Study You Just KNOW Is Wrong.”

Dan begins his post with a discussion of the learning styles controversy, and how educators who think they are “in the know” will pounce “with glee” on anyone who mentions learning styles. He goes on to say:

verbal_thrashing_snob

This made me wonder whether any of us had said anything bullying or snobbish about Jaswal et al or their studies. So I went through the various threads, and the only things I found that I thought might possibly be interpreted as snobbish or bullying were these:

Stanford_Phdstereotype_threat

Anyway, Dan goes on to explain how if you uncritically dismiss disproven theories you might miss new developments. As an example of a new development that he has not missed, Dan cites new research on learning styles theory and notes that his views have changed as a result.

I’m familiar with Dan’s skepticism about learning styles, and so I was intrigued to hear he’d changed his mind. I followed the link he gave to his new views, read through to the conclusion, and this is what I found:

learningstyles

But anyway, back to Dan’s blog post. Dan next turns to Jaswal et al’s paper:

predictions_about_looking_and_fluency

Missing from this discussion is the most likely way that cuing could occur: not through a distinct cue for each of the 26 letters of the alphabet, but through the movement by the facilitator of the letter board. Such movement is a regular occurrence in videos of RPM, including those that are included in this study.

In particular, the facilitator may (unwittingly) shift the letter board such that a particular letter approaches the subject’s finger and/or enters the path of his/her eye gaze. To pick up on such cues, the subject does not look up at the assistant.

A moving letter board also makes it hard to draw reliable conclusions about intentional eye fixations or about typing rhythm.

Anyway, moving on, Dan turns to some of our concerns. Noting (correctly) that I mischaracterized Jaswal’s relationship to something called “The Tribes” (thus mischaracterizing the precise nature of Jaswal’s collaboration with clinic’s director), he turns to a tweet by Jason Travers, observing that:

different_experiment

Dan leaves it at that. But Jason is making an important point. Yes, he’s asking for a different experiment, but not one that differs in the ultimate questions being explored (i.e., the authorship of the messages). Rather, Jason is asking for an experiment that addresses these same questions using a more rigorous, well-established methodology: one where the possibility of facilitator influence is eliminated, as it is in a message passing test.

Jaswal et al attempt to explain why they think message-passing tests are problematic, making some claims that anyone with any background in language acquisition and linguistic pragmatics would instantly recognize as absurd:

message_passing

Years of prompting and feedback are needed before children are able to convey new information? Tell that to the parent of a young toddler! Then there’s the fact that all of the participants, although they’re called “nonspeaking,” can talk—just not fluently and interactively.

nonverbal

What would cause these kids to be more fluent and interactive when typing on a letter board with an index finger? That is a question that Jaswal et al leave unexplained.

Even if Jaswal et al had good reasons for rejecting message passing, they’d still need to explain why they didn’t take other influence-reducing steps–like blindfolding the assistant and/or placing the alphabet board on a stationary stand. Such options are never even mentioned.

Dan does not discuss these huge design flaws. Nor does he address our concerns about how a moving board (1) provides cues that don’t involve subjects looking up at the assistant and (2) seriously warps the eye gaze results. Nor does he address various concerns we had about how the data was coded.

Instead, having dispensed with Jason, Dan then reacts to two tweets that, he grants, do address the data and its methods.

eye_gaze_dwell_time

I’ve reviewed these and other tweets of @24shaz and @angelrabanas re the videos, and as far as I can tell, Dan’s reaction here is a non sequitur that does not rebut their critiques. Doing that convincingly would require quite a bit more discussion.

Dan then turns to a tweet I posted:

beals_tweet

So I went back to the methods section to see if I had missed something:

point_coding1

There’s nothing here, so far as I can tell, that’s relevant to the issue of oral cues being delivered ahead of letter selection. Nor does this issue come up anywhere else in the methods section.

Having dispensed with the above tweets, Dan turns to one regarding the study’s small sample size and explains how these are routine in neuropsychology. He does not address concerns about how the subjects were non-randomly selected–they were hand-picked by the clinic–or about the grounds for eliminating one of the subjects.

Dan then dispenses with the rest of our tweets, among them many more that focused on methodology and data (and a mysteriously missing video) with this:

mostly_attacking

Alluding to his opening remarks, Dan then contrasts his take on our tweets with his take on his openness to revising his views on learning styles.

mostly_castigating

He goes on to say that people would be best advised to just ignore studies that they aren’t going to bother to read and that are outside their areas of expertise:

ignore

Regarding the second point, on expertise, what’s most relevant here, as far as our critiques go, is the expertise involved in evaluating RPM and FC videos for signs of manipulation. Some of us have spent many hours doing this—perhaps more hours than this paper’s authors, reviewers and advisors have.

Regarding the first point, about bothering to read things, the same applies to Dan himself. If he has the feeling that a conclusion (say one regarding Jaswal’s paper) is probably wrong, but doesn’t want to take the time to properly engage with the arguments, he might be better off ignoring it.

Incidentally, if Dan has a feeling that Jaswal’s critics are probably wrong, he has left out one possible reason why: he and Jaswal are colleagues in the same department at UVA, and Dan is mentioned in the paper’s acknowledgements:

acknowledgements

Dan concludes with this:

righteous_indignation_but_I_can_speculate_about_dan

If Dan were to inform himself about the harsh and abusive practices in both FC and RPM (evident in some of the videos of kids who are subjected to it), and about the linguistic and educational opportunity costs that they potentially impose, and about the evidence of greed and malice within the FC/RPM industrial complex, he might hesitate to interpret our passionate concern as nothing more than righteous indignation.

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:

 

Monday, Monday

Yesterday was Monday. 

My college had scheduled a budget town hall for Monday, which I wanted to attend (all bad news there), but first, after I opened the email with the Zoom link, I had to be locked out of my account. 

That was actually kind of fun, it was so normal. Locked out of my accountyes! I remember being locked out of my account! I used to get locked out of my account with some regularity back in the day, and it felt good to be doing it again. This must be what people mean by “stir crazy.”

So I was up for it, but being locked out of my account during quarantine turned out to be different from being locked out of my account in my old life.

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“wrong, wrong, and wrong” and back to the future

Great line from Michael Osterholm in a recent CIDRAP podcast (Episode 4: The Reality of Testing):

-24:13: Last week I was at a meeting online with a prominent foundation in which a world-renowned economist, a Nobel Prize Laureate in economy, proposed that we be able to test 30 to 40 million people a week every week starting next week, and when I shared with him that that was not possible, his first reaction was that I’m part of the problem because I’m such a naysayer because I’m in fact you know always beating down these possibilities.

I like to think of myself just as a lighthouse saying, You know you may be a big aircraft carrier, but if you keep coming at me, buddy, I’m not moving, nor is the shore. 

You do like to see Nobel Prize Laureates forcibly informed that supply chains aren’t actual magic every once in a while. At least, I do.

Another great observation:

-26:38: I have raised on multiple occasions … that testing is not going to be widespread available in this country. Just accept that. … It’s what we first put forward more than 7 weeks ago … we are going to have a collision course with destiny called “reagent availability.”

It’s not about money, it’s about physics…. You can’t create the infrastructure overnight.

Wrong, wrong, and wrong:

-17:22: I’m surely not a stranger to or in any way opposed to contact tracing following a valid and comprehensive testing program. I see none of that here. And yet I worry that the whole country opening or reopening or closing or reclosing, or whichever [way] you want to look at [it], are all based on this testing program.

This is wrong, wrong, and wrong.

I had a funny moment yesterday.

As a nonfiction writer, I became pretty good at vetting experts.

With COVID, I chose Osterholm right away, but I was also following Marc Lipsitch, and had just recently discovered John M. Barry. I trust all three. [6/22/2020 UPDATE: I’ve changed my mind on Osterholm, for a couple of reasons. Still find what he had to say early on important–though he may have been wrong about the future availability of reagent, I don’t know.]

So this week Osterholm’s program, CIDRAP, came out with its first report.

Authors: Osterholm, Lipsitch, Barry.

Plus Kristin Moore, who I hadn’t yet come across.

I have no idea what nonconscious criteria I used to put those three together.

.

Back to the future

We’re 64 days into lockdown here in New York, and the sun is out. My brain finally feels clear enough to think about education again. Yay!

I’m definitely going back to the classroom in September.  

Assuming classes are held, of course. If they aren’t, Zoom on.

Bad news on viral dose and viral load?

I’ve been harboring hope lockdown might produce herd immunity through milder illness via milder viral “dose.”

That is to say, even under lockdown many of us will still be exposed to COVID-19, but we’ll be exposed to less of it than we would have been if, as in my case, we’d carried on living with a spouse taking the subway 5 days a week.

The freaking subway! Five days a week!

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Known unknowns

Ed read this article earlier today: Sortie de confinement, ou la somme de tous les dangers par Philippe Sansonetti.

Tells me that toward the end the author reports that herd immunity (l’immunité de groupe) to COVID-19 is by no means assured:

Les sujets guéris sont-ils protégés naturellement contre l’infection, qu’ils aient ou non développé ces fameux anticorps spécifiques neutralisants dont on espère tant ? A fortiori, les sujets demeurés asymptomatiques ou pauci-symptomatiques sont-ils protégés et pour combien de temps ? En effet le virus sera demeuré dans ce cas circonscrit à la muqueuse rhinopharyngée, ce qui peut donner lieu à une immunité locale, mais de quelle durée ? De quelle efficacité protectrice ? De quelle capacité à faire transition vers une immunité systémique globalement efficace ? En un mot, l’immunité de groupe offerte par beaucoup de maladies infectieuses et par les vaccins répondra-t-elle aux équations habituelles ?

Google translation: Are the healed subjects naturally protected against infection, whether or not they have developed these famous specific neutralizing antibodies which we so much hope for? A fortiori, are the subjects who remain asymptomatic or pauci-symptomatic protected and for how long? Indeed the virus will have remained in this case circumscribed to the nasopharyngeal mucosa, which can give rise to local immunity, but for how long? How protective is it? What is the ability to transition to globally effective systemic immunity? In a word, will the group immunity offered by many infectious diseases and vaccines meet the usual equations?

Looks like a good opportunity to practice my French.

Social distancing and the 2nd wave

I’m looking at the article I posted a couple of days ago: Public health interventions and epidemic intensity during the 1918 influenza pandemic.

I don’t have the bandwidth to read Hatchett et al closely at the moment … but wanted to clarify that their study does not offer a great deal of hope that we could develop herd immunity via more people infected with milder illness, thus fewer deaths. (It’s the study of immunity in Gangelt Municipality that supports herd-immunity-via-lower-viral-dose/lower-death.)

The authors assume the opposite, in fact: 

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gasstationwithoutpumps on viral load and COVID-19 models

Comment from 4/11:

Models can include viral doses (see Methods of modelling viral disease dynamics across the within- and between-host scales: the impact of virus dose on host population immunity) but you need more information about how the viral load changes with the course of the infection and how contagious people are at different stages. We don’t have that detailed information about SARS-CoV-2, so simpler models have to be used (and we don’t even have all the data we need to set the parameters of even simpler models, which is one reason the predictions have such wide ranges of possible outcomes).

And see:
Know your enemy
Can lockdown produce herd immunity with fewer deaths?

Social distancing and immunity
gasstationwithoutpumps on viral load and COVID-19 models
Social distancing and the 2nd wave
Viral dose, viral load

Social distancing and immunity – German study

First time I’ve seen a researcher suggest we could achieve milder illness and immunity via lockdown:

By adhering to strict hygiene measures it is to be expected that the virus concentration of an infected individual can be reduced to the point that the illness manifests more mildly, with simultaneous development of an immunity. These favourable conditions are not present in a superspreading event (e.g. Karneval meeting, apres-ski bar in Ischgl, Austria). Hygienic measures are expected to have positive effects on overall mortality.

Preliminary result and conclusions of the COVID-19 case cluster study (Gangelt Municipality)

And see:
Know your enemy
Can lockdown produce herd immunity with fewer deaths?

Social distancing and immunity
gasstationwithoutpumps on viral load and COVID-19 models
Social distancing and the 2nd wave
Viral dose, viral load

A stewardess’s folk remedy

A few years ago, one of my sisters talked to a stewardess about viruses on planes. 

The stewardess said she and her colleagues fended off viral infections by using a cue tip Q-TIP (thank you, gasstationwithoutpumps!) to apply Ayr Saline Nasal Gel with Soothing Aloe to their nasal passages. My sister has been using that advice for flights ever since.

Our urgent care center told Ed that saline gels help prevent nose bleeds. I have no idea whether it also creates a barrier to viruses–or, if it does, whether it does so for COVID 19 specifically.

But I’m passing it along.

Let’s go to the dictionary

C is coming to stay with us for the duration. We have two bathrooms and an extra bedroom, so he’ll quarantine there for 14 days. 

I’ll feel better having him here, but he’s a big guy and he’s going to need food. 

Uh oh

I was figuring our bread flour would last another month, but now probably not.

Flour is a challenge, seeing as how my King Arthur order seems to be permanently delayed, and Amazon is out of stock. Looking for information, I found this yesterday in the Washington Post:

“I can absolutely and unequivocally say there is no shortage,” said Robb MacKie, the president and CEO of the American Bakers Association, whose members include packaging companies as well as makers of flour and yeast. “What we have is a demand issue.”

People are baking bread like crazy, and now we’re running out of flour and yeast
By Emily Heil – March 24

Too many customers, not enough stuff…. 

When Ed pointed out that too many customers/not enough stuff is the definition of a shortage we both burst out laughing. Supply-and-demand humor: this is the kind of thing we now find hysterically funny!

Just 4 weeks ago I was talking to a neighbor who grew up in the Soviet Union. I had brought her a loaf of bread and she told me stories of not being able to buy or bake bread in the USSR. She has a memory of her mother one day being finding a hard, dry loaf of rye and how happy they all were to have it. 

This morning I’ve heard from a friend who has one friend dying, another with a fever of 104 who is staying home because the hospitals are full.

So … I’m going to follow my new rule of appreciating each day while I have it.