Facilitated Communication: up close and personal

Time for my promised close, critical look at specific instances of facilitated communication—FC for short.

But first, a preliminary note.  In being critical in what is an extremely sensitive area, I don’t want to reveal names of kids and parents. I’ll provide links to material that’s been made publicly available–stuff posted on the Internet, mostly by or in collaboration with family members. But in what I write here, I’ll be avoiding names or abbreviating them.

Let’s start with a particular scene of facilitated communication reported a few years ago by the University of Pennsylvania college paper:

“Am I misusing college for my personal health?” D., 19, typed out on an iPad during a November interview. He guided his interpreter’s hand over the letters on an app he and his parents developed called iMean. He needs a steady hand to help him concentrate his thoughts into words and keep his autism from getting in the way of communicating. D., who takes two classes at Penn through the College of Liberal and Professional Studies’ Young Scholars program, has come to think of education as a form of healing.

“Popcorn!” D. would shout out in the middle of the interview, rapidly rubbing his thumbs against his fingers and shaking his head loosely. “Pop-corn,” he repeated slowly, the syllables snapping off his tongue like bursting kernels. At the same time, D. would be typing an eloquent reply about the nature of language and communication on his iPad with the help of his interpreter — either his father M. or 2014 College graduate K.

Here we see two tracks of communication: the facilitated track, which involves typed responses to questions about the nature of language and communication, and the un-facilitated track, which involves oral outbursts of “popcorn!” How do we reconcile these?

According to the research on FC, the most likely scenario here is that, while D is independently articulating the word “popcorn,” it’s one of his facilitators who is formulating the response about language and communication.

Furthermore, the research suggests, the facilitators are doing this unwittingly—i.e., without realizing that it’s their words rather than D’s. In a January, 2018 Forbes article about the abuses of FC, there’s a discussion of former facilitator Janyce Boynton:

Boynton believed at the time that what she was doing was real–as she puts it, she simply “did not want to believe that FC was a hoax.” She also makes it clear that many of the people she learned from sincerely believed that FC was real. Boynton herself was crushed when she realized that she–and not the severely autistic child who had been entrusted to her care–was typing all the messages.

D’s FC involves hand-over-hand guidance; watching this in action, it’s quite hard to tell who is guiding whom. One thing to look for is who is more consistently focused on the keyboard: the facilitator or their client.

Here are a couple of videos of kids using  this kind of FC:

Other, more subtle forms of FC involve one or more of the following:

Variant I—The facilitator holds and moves the keyboard:

The facilitator holds up a letter board or keyboard in front of the client, and the client pushes on letters. Here there’s no hand-over-hand guidance, but generally the keyboard isn’t held still and, as the facilitator shifts it around, he or she may be unwittingly cuing the child about which letter comes next. In addition, some facilitators call out the letters as they are typed, sometimes milliseconds before the client has actually clearly made the selection.

Though typically the motivation behind FC is that the child isn’t able to speak, the last two videos feature a child who can–as you see from her pronunciation of the letters and from her brief words at the beginning of the last video.

Variant II—The facilitator pre-selects the responses:

The facilitator holds up two word cards in front of the client and the client points at/touches one of them in answer to a question. Here, too, the client may be cued by subtle movements of the word cards closer to or further away from his/her extended finger. We see this with the Rapid Prompting method, for example:

Variant III: Word prediction and other subtle prompts

Here the screen is stationary and the typing independent–but with two sources of facilitation:

  1. a parent or therapist sitting nearby, eyes glued to the screen, sometimes with a hand on the client’s shoulder, occasionally giving oral prompts.
  2. some sort of word prediction software, such that the client only needs to type a few letters and then select the whole word from a small number of choices.

In the last video, we don’t see what’s actually being typed, and it looks like the child is hitting the same spot on the keyboard over and over again except when moving rightwards and apparently clicking a “speak” button.

Many of these cues are so subtle that it’s perhaps hard to believe that they’re really that influential. But then we must remember Clever Hans, the horse that could do arithmetic:

The horse got the right answer only when the questioner knew what the answer was and the horse could see the questioner. He observed that when [owner] von Osten knew the answers to the questions, Hans got 89 percent of the answers correct, but when von Osten did not know the answers to the questions, Hans answered only six percent of the questions correctly.

Pfungst [Oskar Pfungst, the psychologist investigating the case] then proceeded to examine the behaviour of the questioner in detail, and showed that [bold-face added] as the horse’s taps approached the right answer, the questioner’s posture and facial expression changed in ways that were consistent with an increase in tension, which was released when the horse made the final, correct tap. This provided a cue that the horse could use to tell it to stop tapping. The social communication systems of horses may depend on the detection of small postural changes, and this would explain why Hans so easily picked up on the cues given by von Osten, even if these cues were unconscious.

True, this is about horses, not humans, but then:

Pfungst carried out laboratory tests with human subjects, in which he played the part of the horse. Pfungst asked subjects to stand on his right and think “with a high degree of concentration” about a particular number, or a simple mathematical problem. Pfungst would then tap out the answer with his right hand. He frequently observed “a sudden slight upward jerk of the head” when reaching the final tap, and noted that this corresponded to the subject resuming the position they had adopted before thinking of the question.

Might there be similar physical cues in the various FC videos?

In my next post, I’ll move on to the facilitated messages. We’ll look at the various phrases and sentences that are being attributed to these and other individuals with autism, and what may really be going on underneath it all–and why.

Why is Facilitated Communication making a comeback? (Part II–a very bleak post)

It’s now time, in this series on autism, neurodiversity, and language learning, to return to two key criteria for autism in the most recent DSM (the DSM V), each of them tapping into deficits in what’s called Joint Attention:

  • Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
  • Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

The consequences of these deficits are potentially devastating. We’ve already considered (starting here) how, the more severe these symptoms, the more impaired any kind of language will be, whether spoken, written, typed, or signed; whether we’re talking about producing language or comprehending that of others. At the most severe end of the autism spectrum, there is an inability to use or to comprehend any form of symbolic language. This, in turn, limits communication to body language and (in cases where the person can grasp cause and effect and pictorial representations of objects/actions) to touching picture icons to communicate basic wants.

dynovox

 

Such is the hard reality of severe autism, and of the severe limitations in Joint Attention that go along with it. But it gets worse.

Limited or absent Joint Attention means a limited connection to other human beings. It means a limited ability to grasp others as conscious entities. It means that when the person is communicating through body language or by touching picture icons, that communication is more a matter of expressive communication (as when a newborn cries out of distress) or of causal behavior (as when one pushes a button to ring a bell) than it is of deliberate, intentional communication. Absent Joint Attention, a severely autistic individual who cries out or bangs his or her head isn’t intentionally transmitting a message to another person, in the way that someone who yells “I’m really upset right now” might be. Absent Joint Attention, a severely autistic individual who pushes someone away or pulls them towards a desired object isn’t intentionally communicating “Go away” or “Give me that” in the sense of consciously attempting to get those words into the other person’s head. Absent Joint Attention, a severely autistic person who points to a picture of a pretzel on a Dynavox isn’t intentionally attempting to cause a thought about a pretzel to occur to someone nearby.

Limited or absent Joint Attention means limited or absent consciousness of other people’s minds; limited or absent consciousness of other minds, in turn, means limited or absent intentional communication.

But who, in their right mind, doesn’t wish it were otherwise? When we witness a person who makes little to no eye contact, who doesn’t produce words (in speech, text, or sign language), and who seems unresponsive to the language of others, isn’t it preferable to believe that this person, rather than having limited awareness of all these things, is actually fully aware but locked in? That their minds are fully intact, and that only their bodies are holding them back? That they desperately want to connect with us, if only their bodies would let them?

Who, in their right mind, wouldn’t prefer to believe that, if only such people were given the right kind of physical support, they would eventually communicate things like:

“The beauty of my mind is often ignored by my difficult body”

“I want people to understand that not speaking is not the same as not thinking”

“Until I learned to read and write, people thought I had no mind.”

I’ve selected these three statements deliberately. Each one is a statement that is purported to have been intentionally communicated by someone who is–whether rightly or wrongly–considered severely autistic and who uses–whether deliberately or only apparently–one or more variants of facilitated communication. In my next post, we’ll take a closer look.

Why is Facilitated Communication making a comeback? (Part I)

(I, too, am making a comeback, after suddenly becoming intensely busy with a small NSF grant–more on that later).

This post continues a series I’ve promised would take us to “highly contagious and dangerously inaccurate meme about what autism is.”

To recap my last post, from way back on October 12th:

  • The ability to acquire language and understand what other people saying is correlated with the severity of autism.
  • If you understand most of the spoken or written language that surrounds you–including sophisticated psychological vocabulary, jokes, innuendos, and other forms of figurative language–then, assuming you’re on the autism spectrum at all, you’re way far out on the mild end of it.
  • You might look severely autistic even if you can do all these things. For example, you might have such severe apraxia that you are unable to articulate speech sounds. You would then appear to be nonverbal. Nonetheless, you should still be able to learn how to produce written language.
  • ..unless you have additional motor-control or body-awareness difficulties. In other words, unless you have a combination of (1) mild autism, (2) speech apraxia, and (3) profound motor and body awareness difficulties: theoretically possible, but, in practice, extremely rare.

If you are one of these (extremely rare!) people, then how do you communicate? The most common strategy out there, as it turns out, is Facilitated Communication. A facilitator provides support to your wrist or arm while you type out words on a keyboard.

The only problem is that Facilitated Communication has been soundly debunked. In the words of this 2014 meta-analysis:

Results indicated unequivocal evidence for facilitator control: messages generated through FC are authored by the facilitators rather than the individuals with disabilities. Hence, FC is a technique that has no validity.

In the words of the American Speech-Language-Hearing Association:

“FC is not an effective form of communication and does not provide access to communication… [it] has been associated with significant preventable harms arising through false allegations of sexual abuse and mistreatment.” (Boynton, 2012Chan and Nankervis, 2014Wombles, 2014)

In a June, 2018 article in Forbes, Steven Salzberg asks:

Why do people still practice facilitated communication? Are they even aware that what they’re doing is deeply harmful? A compelling case is made in this lengthy expose, published in 2012 by a former facilitator, Janyce Boynton, who admits that she was responsible for “graphic depictions of rape and sexual assault that had no bearing in reality.” Her actions led to a family being split apart and the parents being charged with child abuse.

Yet Boynton believed at the time that what she was doing was real–as she puts it, she simply “did not want to believe that FC was a hoax.” She also makes it clear that many of the people she learned from sincerely believed that FC was real. Boynton herself was crushed when she realized that she–and not the severely autistic child who had been entrusted to her care–was typing all the messages.

But FC’s comeback continues, and the reasons go back to… “a highly contagious and dangerously inaccurate meme about what autism is.”

Stay tuned for my next post, which I promise will be soon.

Autism, neurodiversity, and language learning, Part VII

(Part VII in a series of posts that will soon take us to a highly contagious and dangerously inaccurate meme about what autism is.)

In my previous posts, I’ve made the following points:

–How much language you acquire, including how much language you comprehend, is correlated with how much attention you’ve paid, over the years, to other people’s speech and to what they are looking at and doing when speaking.

–Deficits in these attention behaviors, which are examples of what’s called Joint Attention, are among the core symptoms of autism. (If you don’t have deficits here, the diagnosis doesn’t apply).

–Therefore, the ability to acquire language and understand what other people saying is correlated with the severity of autism.

What all this means is that, if you understand most of the spoken or written language that surrounds you–from concrete labels to sophisticated psychological vocabulary; from simple, direct statements to jokes, innuendos, and other forms of figurative language–then, assuming you’re on the autism spectrum at all, you’re way far out on the mild end of it.

Now, as I discussed earlier, you might have a person who looks severely autistic even if they can do all these things. But the reason they look severely autistic isn’t because their autism is severe, but because they face additional challenges that limit their ability to actually produce language–to produce their own phrases, sentences, psychological vocabulary, jokes, innuendos, and figurative turns of phrase.

The most common culprit, as I noted, is apraxia of speech. Speech apraxia can severely limit one’s ability to produce spoken words. But it doesn’t affect writing and typing. I’ve witnessed a number of individuals on the autism spectrum who barely speak–if they speak at all–but can still produce phrases and sentences through independent typing.

(Most of these kids are still severely autistic–their joint attention behaviors are limited, and when they type they produce only a limited range of phrases, sentences, and vocabulary–but their comprehension skills are still significantly ahead of their oral skills).

However, as I noted earlier, it’s theoretically possible for there to be additional motor-control or body-awareness difficulties that prevent a person from producing written language, even if she has long been regularly attending to speakers and understands a great deal of the language that surrounds her.

Such people–profoundly apraxic, profoundly motor-impaired, yet only mildly autistic–are probably extremely rare. But that doesn’t diminish the tragedy of their situation: that of being full of language and thoughts but completely unable to communicate them. To the extent that we can help these “locked in” individuals, it’s urgent we do so.

One way would be to devise some sort of physical assistance that eliminates the motor-control or body-awareness barriers to writing or typing. Perhaps if some sort of human facilitator were to provide such assistance, a profoundly apraxic, motor-impaired person would suddenly be able to communicate all the thoughts they’ve had locked up inside.

Such barrier-surmounting assistance is purported to exist already: it goes under the name of “facilitated communication.” More on this anon.

Autism, neurodiversity, and language learning, Part VI

(Part VI in a series of posts that will soon take us to a highly contagious and dangerously inaccurate meme about what autism is.)

In my previous post, I discussed how there might be factors besides Joint Attention deficits that could contribute to the failure to acquire spoken language. As I wrote:

in some cases the primary culprit for lack of spoken language may be apraxia of speech rather than autism-related Joint Attention deficits. If so, then the autism itself may be relatively mild. In particular, the person’s receptive Joint Attention behaviors, along with his/her ability to pay attention to what people are doing when they speak, may be only mildly impaired. In this case, he or she should be able to acquire receptive language–to learn to understand what people say–even if he or can’t speak.

What this means is that the inability to speak doesn’t entail the inability to produce other forms of language–for example, written language or sign language.

Conversely (and not so surprisingly) the inability to write or use sign language doesn’t entail the inability to speak. Perhaps you no one has taught you how to read, write, or sign. Perhaps you have a visual impairment. Or perhaps you have a fine motor impairment that impedes writing, signing, or even typing.

While the last possibility–a fine motor impairment that impedes typing– is relatively rare, fine motor impairments can be co-morbid with autism.

So while autism at its severest levels (as I argued earlier) means being unable produce language in any medium, mild autism doesn’t necessarily mean the opposite. Theoretically, you could have someone who is tuned in enough (via Receptive Joint Attention) to acquire receptive language, but so severely apraxic and so severely impaired in their fine motor skills that they are unable to speak, sign, or type indepedently. Theoretically, you could have someone who understands everything they hear or read but still can’t produce, on their own, any language in any medium.

And, while it seems like such individuals would be highly atypical, even within autism, a slew of recent news reports, books, and movies would have us believe otherwise. Stay tuned for a closer look.

 

Autism, neurodiversity, and language learning, Part V

(Part V in a series of posts that will eventually take us to a highly contagious and dangerously inaccurate meme about what autism is.)

My previous post drew a connection between the severity of autism (whose diagnostic measures include Joint Attention behaviors) and the severity of the language impairment associated with autism. This connection, I suggested, explains why a significant proportion of people on the spectrum (somewhere around 25%) are nonverbal.

But does this mean that everyone who is nonverbal is so because of Joint Attention deficits? Are there other reasons why someone on the autism spectrum might be, or appear to be, nonverbal?

The answer to this question depends in part on what we mean by “nonverbal.” Do we mean unable to produce any language at all, or unable to speak?

As far as not being able to speak goes, there are other culprits besides Receptive Joint Attention. Profound hearing loss is one. If you can’t hear other people’s speech or your own oral output, then, absent intense speech and language therapy, you’ll likely remain orally nonverbal. Apraxia of speech is another. From the NIH:

AOS is a neurological disorder that affects the brain pathways involved in planning the sequence of movements involved in producing speech. The brain knows what it wants to say, but cannot properly plan and sequence the required speech sound movements.

I highlight this definition of Apraxia of Speech not just because the condition is less familiar than deafness, but because it has been found to be co-morbid with autism. This means that a significant number of nonverbal individuals have both autism and AOS.

Putting all this together, we see that in some cases the primary culprit for lack of spoken language may be apraxia of speech rather than autism-related Joint Attention deficits. If so, then the autism itself may be relatively mild. In particular, the person’s receptive Joint Attention behaviors, along with his/her ability to pay attention to what people are doing when they speak, may be only mildly impaired. In this case, he or she should be able to acquire receptive language–to learn to understand what people say–even if he or can’t speak.

But the inability to speak doesn’t entail the inability to produce other forms of language–for example, written language or sign language. For more on the broader sense of verbal/nonverbal, stay tuned.

Autism, neurodiversity, and language learning, Part IV

(Part IV in a series of posts that will eventually take us to a highly contagious and dangerously inaccurate meme about what autism is.)

So in my previous posts on the subject (starting here), I discussed how Receptive Joint Attention

JointAttention2

correlates with language learning, and how reduced Receptive Joint Attention behaviors impede the acquisition of both spoken and written language.  When RJA behaviors are at a minimum, so is the amount of language learned–whether we’re talking about spoken or written language.

What does any of this have to do with autism?

The connection goes back to the clinical definitions of autism: the definitions that guide how psychologists and psychiatrists make their diagnoses. In the U.S., there’s the Diagnostic and Statistical Manual of Mental Disorders (DSM); worldwide, there’s the World Health Organization’s International Classification of Diseases (ICD).

In both these guidelines, Joint Attention figures prominently. The criteria for autism in the most recent DSM (the DSM V), for example, include these:

  • Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
  • Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

And this:

  • Symptoms must be present in the early developmental period.

The things I’ve bold-faced–particularly responding to social interactions and making eye contact–are the sorts of Receptive Joint Attention behaviors that, I argue earlier, are essential for the acquisition of written and spoken language. Reduced RJA behaviors in early development–when language acquisition begins–mean significant limits on language acquisition.

Another of the criteria relates indirectly to Receptive Joint Attention:

  • Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

Highly restrictive interests, combined with a preference for objects over people (which is an early predictor of autism in infants), is one reason for reduced Receptive Joint Attention behaviors in autism.

Here is one more DSM guideline:

  • Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

Collectively, what all this means is that the more severe the autism, the more limited the acquisition of spoken and written language. At its most severe, autism means total lack of language–a.k.a. non-verbal autism.

But for some people, severe/non-verbal autism has come to mean something completely different… Stay tuned.