While the counter-evidence mounts, Facilitated Communication makes a comeback

Continuing from where we left off, Facilitated Communication’s lack of credibility is multi-faceted.

As we saw in my last post, the messages that FC typically generates are highly suspect. With their often perfect spelling, sophisticated vocabulary, figurative phrasing, bland messages, and stilted tone, they don’t sound like they’re coming from the young kids and teenagers being “facilitated”–especially as these particular individuals seem to lack the Joint Attention behaviors necessary for picking up even the most basic vocabulary.

As we saw in the videos I posted (three of which have since been removed from Youtube), the behaviors of the facilitator and facilitatee are also highly suspect. The facilitator not only provides physical cues that are at least as salient as those that cued Clever Hans, but keeps her eyes fixed on the screen; the person undergoing facilitation often looks away, even while his index finger makes large arcs from one key to another or wanders over the keyboard while the facilitator shifts it around. In many of these videos, the keyboards interface with sophisticated word-completion software that allows the correct next word to be selected with minimal cuing–as we see up close in one of these videos.

Finally, all well-designed studies show significant facilitator influence over FC messages.

So why—despite all these concerns—is it making a comeback?

To some extent, it never went away. Even after Frontline’s 1993 exposé Prisoners of Silence, which chronicled FC’s spectacular debunking in the wake of false accusations against parents of sexual assault, typed out by the fingers of facilitated children, FC has continued as a treatment for autism–as have cases of Facilitated Communication-enabled abuse charges.

But four recent movies have boosted FC to a whole new level of uncritical acceptance:

  1. Autism is a World, a 2004 documentary featuring an adult FC user that has worked its way into college and masters-level classes on autism
  2. Wretches and Jabberers, a 2012 documentary promoting FC as a way of helping people “break out of their isolation”
  3. Deej, a 2017 documentary featuring an FC user who gets accepted to Oberlin College
  4. Far from the Tree, a 2018 documentary based on Andrew Solomon’s book, featuring different kids with different issues, including one with autism: a boy who’s been “unlocked” by facilitated communication and is now a straight-A student. (This is the same child whose videos have been removed from Youtube).

And FC has penetrated the therapy world as never before–via the Facilitated Communication Institute at the University of Syracuse (which was recently renamed the Institute of Communication and Inclusion, and which produced the second movie listed here)–such that:

fc_stats

So many hopeful parents; so many duped therapists; so many well-intentioned philanthropists enriching unscrupulous institutes and their various gurus.

But one constituency that’s missing from this slide (from a presentation by Scott Lilienfeld at Harvard Medical School, broadcast in 2016, a couple of years before the most recent movies) is the most unlikely constituency of all. A fair number of highly verbal adults who identify as autistic have also embraced facilitated communication.

Why them? Stay tuned.

Syntax is not so easy

Poor Andrew.

Yesterday’s Sentence Weaver lesson featured the distinction between:

Which circles are biggest?

and

Where are the biggest circles?

The answers were things like:

the circles in the middle [are biggest]

versus

the biggest circles [are in the middle]” 

He was not getting it at all.

Actually, I think he was getting one question & not the other, but I was too preoccupied trying to teach him what left-right-middle and top-bottom-middle meant to write down which question was which. 

Anyway, I could almost hear him thinking:

These are all the same words! 

What the hell?

Maybe I should be teaching him Latin instead. 

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.

The issue I’m grappling with — the issue so many of us are grappling with — is that seriously autistic people learn only to ask for things and to say no to things.

Request and protest.

That’s a lot, of course, and our kids’ teachers did a yeoman’s job getting Andrew there. 

But it’s not enough.

To fend for yourself, even as (or especially as) a person living in a group home, you also need to be able to report. 

Not to put too fine a point on it, you need to be able to say “He hurt me.”

Or: “He hurt him.”

Or: My aide fell down, s/he needs help.

You need to be able to ‘advocate’ for yourself and for others.

Being able to report — that’s a whole other ballgame, and I’ve never seen a seriously autistic person learn how to do it in school.

(Autistic people need to be able to ask questions, too, but that’s a subject for another post.)

Anyway, as of today Andrew and I are all set. His program is a mile away; I’ll be there every day at 1pm, and we’ll spend fifteen minutes marching ourselves through the syntax of the English sentence. 

Duolingo has a little blurb that runs while the app is loading:

15 minutes a day can teach you a language. What can 15 minutes of Instagram do?

Andrew is going to spend 15 minutes a day learning his own native language, so we will see. 

Update 1/19/2019: not 15 minutes. An hour. 

I wonder what the optimal amount of time would be?

What messages does Facilitated Communication communicate?

And now for my promised but much-postponed discussion of the actual messages generated by Facilitated Communication (FC).

Some of these messages can be seen being typed out in real time (via the links I inserted here, here and here). These include:

  • “Forget labels. My autism does not define me”
  • “I think I was lost in some way. I know I was retarded meaning I acted like my worst nightmare.”
  • “I find that only FC allows for fully telling people what I want to say.”
  • “I find that I need a lot of practice to become fluent”
  • “Took a year before I was able to type with fading support”
  • “I am not stupid as some people used to think”
  • “I would not get to this stage if I did not get full support initially”
  • “The truth is I am always trying to promote open communication to show that is what I do all day and I am getting really tired of people insinuating that I wear a puppet string because this is hard enough without people rooting against me.”
  • “My voice works it’s the words that come out that throw people off the intelligence trail.”
  • “The beauty of my mind is often ignored by my difficult body that is very childlike in movement.”
  • “Doing fish lips to the audience is an expression of funny playfulness but can be interpreted as simple mindedness. Silliness is acceptable in those who are believed smart but for those like me it indicates stupidity”

Other messages were purportedly generated off-screen. Examples include:

  • “Until I learned to read and write, people thought I had no mind.”
  • “Because you can’t speak, they assume you can’t hear, or think, or feel”
  • “Reading and writing are rarely taught to non-speaking autistics. You plot to get my people free? Hope to help the other kids have meaningful lives.”
  • “My heart it set on Oberlin. I want to be its first non-speaking autistic.”
  • “My senses always fall in love / they spin, swoon/ they lose themselves in one another’s arms / your senses live alone like bachelors / like bitter, slanted rhymes whose marriage is a sham”
  • “Autism is a world so difficult to explain to someone who is not autistic. Someone who can turn off the particular movements and actions that take over our bodies.”
  • “Confidence is a hard thing to display when one is autistic. For other people, actions and mannerisms openly display their confidence. But the gift of autism prevents me from actively controlling my actions and outward mannerisms. I can’t speak. I have to use a computer to transmit my thoughts and feelings. Other people express confidence by the tone of their voice. I have no voice. I have only the monotonous voice of my laptop computer. I have no idea if my laptop displays confidence, but it sure has helped me combat the ravages brought by this insidious gift.”

There are few things to note about these messages.

First: in both style and content, they’re highly stilted. They show little personality–particularly personality of the sort one would normally associate with kids as young as these are (most of them are somewhere between nine and nineteen). When my autistic son was in this age range, he was texting me message like “How many ceiling fans do you think I saw today?” and “Give me more money or I’ll punch your nose.” In re-reading the facilitated messages, I’m reminded of Invasion of the Body Snatchers: in all three versions, often the first sign that someone is no longer himself are the bland words coming of his mouth. FC or no FC, there’s something creepy going on here (far creepier than my child joke-threatening to punch my nose).

Second, there’s the perfect spelling, prerequisites for which include reading. How did these kids–who generally didn’t start attending regular ed classes until after FC “unlocked” them–learn to read? In the few cases where this question is addressed, we’re told that the child learned to read on his or her own–i.e., without formal instruction. But this is something that very few kids accomplish. Most children (as we see in this country’s ongoing whole-language/balanced literacy-induced reading crisis) require systematic phonics instruction to learn how to read. Many of these FC videos, however, counter this concern with an implicit rebuttal: once the kids are “liberated” by FC, they turn out to be geniuses, ending up in honors classes and gifted programs and headed for college. And, after all, autistic savants are a well-known phenomenon, and hyperlexia (early decoding skills) is common in high functioning autism. Maybe these kids really did crack the English writing code entirely on their own.

Fundamental to reading, however, isn’t just phonics, but language. And language delay–in both oral and written language–is one of the core symptoms of autism. This is true even in autistic kids with hyperlexia: they often don’t actually understand the written language that they decode. How did these nonspeaking kids learn to produce such sophisticated written language–such long, complex, well-formed sentences (typed slowly via an index finger that often wanders for whole seconds over the keyboard between selections); and to use such sophisticated vocabulary, often beyond their years–“indicate”, “initially”, “insidious”, “insinuating”, etc.?

At this point, it’s worth recalling one of the points I made in my earlier posts. Whether we’re talking about oral or written language, how much a child learns is correlated with how extreme their autism is, and, in particular, with how often they engage in Joint Attention behaviors. Many of the children figured here are characterized as highly autistic, and in these videos (some of which include scenes of daily life in addition to scenes of facilitated communication) we see few if any, signs of Joint Attention–eye contact with parents or facilitators, following of parent/facilitator eye gaze–all of which are supposed to increase as children get older. As I discussed earlier, acquiring the basic vocabulary that jumpstarts language learning especially depends on eye contact and gaze following.

What about more sophisticated vocabulary? Words like”indicate”,”initially”, “insidious”, and “insinuating” are often picked up not through oral language, but from sophisticated written texts. But comprehending those texts depends on a foundation of general language comprehension–which means that it depends ultimately on the kinds of Joint Attention behaviors that are greatly reduced in profound autism. Furthermore, we never witness or hear about the reading habits of these (or other) facilitated kids. The videos never show scenes of (facilitated or unfacilitated) reading.

Beyond their sophisticated syntax and vocabulary, these facilitated messages are impressive in another way. They indicate facility in specific areas of language that tend to be especially impaired in autism: psychological terms and figurative phrases. We see appropriate use of terms like “forget”, “assume”, “ignore”, and “interpret”;  figurative turns of phrase like “wear a puppet string”, “throw people off the intelligence trail”, and “lose themselves in one another’s arms”; and ironic references like “gift of autism.” As I noted earlier, mastery of this sort of language indicates that, assuming you’re on the autism spectrum at all, you’re way far out on the mild end of it.

But again, facilitated messages aside, all indications are that these children are profoundly autistic; that they are not regularly engaging in the types of behaviors necessary for even basic language acquisition.

So these facilitated messages, in addition to whatever they communicate directly, implicitly convey one more thing: yet another reason to suspect that they come not from the children themselves, but from their facilitators. In my next post, we’ll recap all the other reasons for this troubling conclusion–with all its Invasion of the Body Snatchers-like implications.

System 1 and System 2 compete

I’m putting this here so I won’t lose it again:

Dual-system models of visual category learning posit the existence of an explicit, hypothesis-testing reflective system, as well as an implicit, procedural-based reflexive system. The reflective and reflexive learning systems are competitive and neurally dissociable.

Chandrasekaran, B. et al.Dual-learning systems during speech category learning.” Psychonomic Bulletin Review, 2014 Apr 21, pp. 488-495.

re: 2 kinds of learning inside the brain

Compete,” as I understand the term, means that when one system is on, the other is off — that each system can suppress the other.

That’s the meaning I glean from the various studies I’ve read.

Dissociable” is an important term in cognitive science: it means that the two systems actually are two systems, not just two different aspects of the same fundamental process. The breakthrough study of “dual-system theory” was Smith et al’s study showing that when you experimentally disable one learning system, the other still functions.

The two systems can be “dissociated,” and are therefore two systems, not one.

So I gather.

Progress report

re: 7,000 steps and dry January

Number one: 7,000 steps is a huge number of steps when it’s 30 degrees out. 

Why is that?

Also, why is it no trouble at all racking up mileage anywhere except your house?

Take the train into the city, and you score 9,000 steps just walking outside Grand Central. 

But walk around your ranch house in Tarrytown, and you have to keep moving a good 12 hours to hit 7K, the equivalent of 1 hour walking around midtown. I think Fitbit must be padding the numbers for urban dwellers and unpadding them for folks here in the suburbs. Because they can. 

Anyway, back in December I had a vision of myself rising each morning and appearing in my new town’s new gym, a very nice one, bright and sunny and right next to the Hudson River. I was looking forward to it. 

But here it is January 12, and I see that the missing piece in that vision, getting into my freezing-cold car and driving to the nice new gym beside the river, is a bigger obstacle than I thought. 

I need a transporter pad.

Number two: being stone cold sober and wide awake at 11pm on a Friday night is a novel sensation.

It’s kind of fun, but it poses a whole new challenge to self-control, which is forcing myself to go to bed instead of racking up another XP or 2 or 3 on Duolingo, or teaching myself to code.