Can facilitator influence be reduced to co-construction of meaning?

Sometimes it seems there are as many FC-defending tactics as there are FC proponents. One such tactic is to conflate facilitator influence with so-called “co-construction” or “negotiation” of meaning—the sort of thing that occurs between independently communicating conversational partners—as, for example, when one partner asks for clarification or completes the other partner’s sentence.

For example, Sonnenmeier (1993) compares conversational co-construction to the facilitator’s “stating of an entirely predicted word after a few letters have been selected,” as well as to the facilitator’s various “regulatory” functions:

• “encouraging statements (e.g. ‘keep going’)”

• “reminders to look at the keyboard”

• “cues regarding written language conventions (e.g. ’you need a space after a word’; ’you can use a period if that's the end of your idea.’)”

• “pulling the facilitated communicator's hand away from a wrong letter selection (which should only occur when a facilitated communicator has produced a string of letters that could never be understood)”

• “interrupt perseverative selections.”

And Jaswal et al. (2020) compare interlocutors who help each other find words or complete each other’s sentences to the so-called “assistant” in their study, who:

• sometimes redirected participants who seemed to lose their train of thought

• requested clarification

• interrupted, and said aloud a word before the participant finished spelling it

More recently, Nicoli et al. (2023), as I noted in my recent post, propose that the most likely effects of the facilitator’s touch on the FCed person’s typing” is a “co-creation” process that is analogous to someone who helps a mobility-impaired person walk. They don’t bother fleshing this out further or explaining how this kind of assistance in any way resembles co-construction/meaning negotiation in everyday conversation.

Returning momentarily to Sonnenmeier (1993), she, incidentally, also engages in another common pro-FC ploy: equating FC with AAC. Most AAC promoters, of course, reject this comparison. On the other hand, they, too, invoke co-construction of meaning (see, e.g., Beukelman & Mirenda, 2005). Examples of co-construction cited in AAC use include:

• Partner-assisted scanning, in which the assisting partner moves through a series of items (e.g., letters, words, or pictures) and waits for a signal from the AAC using partner, which indicates the latter’s selection. After each signal, the assistant adds the selected item to the developing message.

• AAC-mediated language instruction, in which a teacher or therapist attempts to elicit responses, asks for clarification, repeats back selected items, and/or models appropriate vocabulary and grammar.

While there’s nothing wrong with these AAC-based conceptions of co-construction/negotiation of meaning, they are specific to either to AAC or to speech-language therapy; they are not characteristic of independent, everyday conversation outside of instructional settings.

There is a problem, however, with the attempts by FC proponents to equate the co-construction/negotiation that occurs in everyday conversation with facilitator influence and facilitator prompting.

The co-construction/negotiation of meaning in everyday conversation takes several forms. One is “completion”: that’s when people complete each other’s sentences or suggest words when the other person is having trouble thinking of them or is otherwise distracted:

A: No matter what answer you give, you’re screwed. It’s like a…

B: Like a Catch 22 situation.

A: Yes, exactly.

As we’ve seen, FC-proponents have compared situations like this to cases where the facilitator says a word out loud before the facilitated person finishes typing it. But as those of us who’ve watched scores of FC videos can tell you, there’s one key thing that’s missing: the equivalent of A’s “Yes, thank you.” The facilitator does not seek confirmation from the facilitated person that he’s guessed the right word, nor does the latter provide such a confirmation. The guessed word serves as an instrument of message control, not of message assistance and message confirmation.

Another element of everyday message co-construction is “expansion.” This occurs when one person elaborates on another person’s message:

A: Last year we went to the Mütter Museum.

B: You and your students.

A: That’s right.

Once again, a crucial part of the co-construction process is the first speaker’s confirmation that his partner’s elaboration was accurate.

Other elements of co-construction involve requests for clarification, which also involve a confirming reply:

A: Where did he go?

B: Are you asking about Mark?

A: Yes.

One sort of co-construction is less visible and doesn’t necessarily lead to a process of clarification and confirmation: the listener’s interpretation of the speaker’s words. Many words mean different things in different contexts, especially pronouns like “he”; many sentences mean different things in different contexts, depending on how literally things are taken. Even a simple sentence like “It’s cold in here” can mean anything from a literal comment about the temperature to a request that someone close the window to an observation about an unfriendly social ambiance.

It’s worth adding that everyday AAC-mediated conversations can also involve completion, elaboration, clarification, and interpretation.

But there are limits to how much co-construction/negotiation of meaning occurs in real-life conversation. Only sometimes do we finish each other’s sentences—and we do so mostly with those we know best. Only sometimes do we elaborate or ask for clarification. And most of the time when we interpret someone’s words in context—e.g., the meaning of “he” or of “It’s cold in here”—we’re not too far off. Usually, the context suffices. Finally, even if we’re wrong, the speaker’s intended message remains. It is still there in her words and it’s still there in her head. And if need be, she can keep reasserting it, perhaps with different words, until it gets across. Her words may change, but her message may remain the same.

The only situation in ordinary conversation where messages change and evolve, and where each person potentially makes an equal contribution to a given message, is when the interlocutors are, in fact, collaborating on a message or an understanding of a problem or situation. Most of the time, however, things are far less cooperative: first comes A’s message, then B’s message, then another message from A, and so on. Whoever the current speaker is owns the current message.

In FC, however, all the rigorous research shows that the speaker’s messages play no role at all in any so-called “co-construction.”

But even in a fantasized scenario in which the facilitator is somehow not controlling the messages, the sorts of “co-construction” that occur most frequently in FC bear no resemblance to co-construction in everyday communication. In addition to:

• The lack of confirmation from the speaker when the facilitator says a word before the facilitated person finishes typing.

There’s:

• The fact that a facilitator is not the same as a conversation partner. Despite recent rebrandings of FC in which facilitators are now “communication partners” or “co-communicators,” the facilitated person is not exclusively conversing with their facilitator. In Youtube videos, for example, they’re typically addressing interviewers or audiences.

• The lack of any resemblance between the facilitator’s activities and instances of completion, elaboration, clarification, and interpretation in everyday conversation.

Indeed, none of these routine facilitator behaviors:

• holding the facilitated person’s wrist or shoulder

• pulling the person’s hand back from the keyboard

• holding up the letterboard and shifting it around

• whisking away the letterboard saying “keep going” when the person’s finger is not yet at the target letter

• saying “right next door” when the person’s finger is one letter away from the target letter

• saying “what makes sense” when the person is about to select the wrong letter

….have anything in common with the kinds of exchanges that occasionally occur in authentic communication:

A: No matter what answer you give, you’re screwed. It’s like a…

B: Like a Catch 22 situation.

A: Yes, exactly.

or:

A: Last year we went to the Mütter Museum

B: You and your students.

A: That’s right.

or:

A: Where did he go?

B: Are you asking about Mark?

A: Yes.

“Yes.” The independent word that confirms the message—so important in authentic communication, and so egregiously and pervasively absent in FC.

---

REFERENCES

Beukelman, D. R. & Mirenda, P. (2005). Augmentative & Alternative Communication: Supporting Children & Adults With Complex Communication Needs. Baltimore: Paul H. Brookes Publishing Company.

Jaswal, V. K., Wayne, A., and Golino, H. (2020). Eye-tracking reveals agency in assisted autistic communication. Scientific Reports. 10:7882. doi: 10.1038/s41598-020-64553-9

Nicoli G, Pavon G, Grayson A, Emerson A and Mitra S (2023) Touch may reduce cognitive load during assisted typing by individuals with developmental disabilities. Frontiers in Integrative Neuroscience 17:1181025. doi: 10.3389/fnint.2023.1181025

Solomon-Rice, P. & Soto, G. Co-Construction as a Facilitative Factor in Supporting the Personal Narratives of Children Who Use Augmentative and Alternative Communication. Communication Disorders Quarterly, 32(2), https://doi.org/10.1177/1525740109354776

Sonnenmeier, R. (1993). Co-construction of Messages during Facilitated Communication Facilitated Communication Digest 1(2), [pp. 7-9]

Are autism rates really going up? And why are there so few moderately autistic kids?

It has recently occurred to me that there may be a connection between:

• autism rates appearing to keep rising
• moderate autism appearing to be increasingly unusual relative to profound autism and mild autism

But before I get to that, I should probably defend the premise of the second question. "Moderate autism" means somewhat socially engaged and able to put words into phrases and sentences, but not fully fluent or grammatical. Moderate autism describes the two individuals with diagnosed autism in my extended family, but hardly anyone else I've encountered in person. 

I first noticed the apparent rarity of moderate autism when I started reading autism memoirs. There are dozens of memoirs about kids who become fully fluent and socially engaged (Tony Attwood's "active but odd" Aspies). And there are dozens of memoirs of profound autism: kids who rarely engage socially and speak only a few isolated words and echoed phrases sometimes, if they speak at all. 

In all my reading, I encountered only one memoir, Clara Park's The Siege, that described a child who was clearly--socially and linguistically--in the middle of the autism spectrum. Indeed, I was so excited to finally learn of someone who resembled my family members that I wrote the one and only fan letter I've ever written, became fast friends with the Park parents, and met Jessica Park several times in person.

Later, when I developed the SentenceWeaver, a program designed for autistic kids who are able to speak and read but have difficulty expressing themselves in fully grammatical sentences, I was once again confronted with the rarity of moderately autistic kids: the kids that seemed most likely to benefit from my work. And later still, when I went around the country interviewing autism parents and teachers on an NSF grant, it once again seemed as if everyone but me was dealing with either severe autism or what used to be called Asperger's Syndrome. 

If this impression is correct, it's quite odd. It would suggest that autism doesn't involve a normal distribution from severe to mild:

But instead something like an inverse bell curve:

This sort of bimodal distribution, however, is not what you generally get with well-defined, empirically grounded categories. Such distributions suggest, instead, that we're dealing with two distinct phenomena.  Indeed, a recent paper suggests that this may be the case: it suggests that higher functioning autism may have more in common with ADHD than with profound autism. That would place moderate autism either at the more severe end of some sort of HFA/ADHD spectrum, or at the higher end of some sort of "pure", ADHD-free autism spectrum.

But just the other day, I started suspecting that there might be a different explanation: a connection, that is, between the relative rarity of moderate autism and the rising rates of diagnosed autism--which in the US now stands at 1 in 36.

The perennial question is whether this increase is an increase in the rate of actual autism, or merely an increase in the rate at which autism is diagnosed. People who say there’s a real increase in autism tend to be clinicians who work in the field, who see their waiting lists getting longer and longer, and parents who are involved in autism parent groups, many of whom are on these waiting lists and/or send their kids to autism-specific programs. When you’re suddenly immersed in autism, it can seem like it’s suddenly everywhere--especially if you find yourself waiting for months for services because so many families are ahead of you in line.

If this increase is real, what is causing it? Most people no longer blame vaccines; those who still do seem to be a mostly fringe group that is also susceptible to other quack notions like chelation and facilitated communication (FC/RPM/S2C). But other theories abound. More older dads? More premature births? More toxins in the environment? More intermarriage between geeks? 

Or is some or all of the increase simply an increase in autism identification and diagnosis, as opposed to actual autism incidence?

There are good reasons to think that changing patterns of identification and diagnosis are a major factor. The removal of the Asperger’s diagnosis from the DSM-5 in 2013 meant that people who would have been diagnosed with Asperger’s were instead diagnosed as autistic. Consistent with this is one study that observes that the increase in autism rates observed in individuals born in 1992 compared to individuals born in 2003 “is stronger for high than for low-functioning children.”

As for low-functioning autism, there's strong evidence that kids who used to be diagnosed as profoundly intellectually disabled are now being diagnosed instead as profoundly autistic.

Could all this explain why moderate autism seems to be so rare relative to profound and severe autism?

Indeed it could. Increased diagnosis of both high-functioning and profound autism relative to moderate autism could potentially flip the curve, raising the rates at both ends of the spectrum, but having no effects in the middle. 

The middle of the spectrum, after all, is the home of the most quintessentially autistic individuals--those who most resemble the early cases on which Leo Kanner based his then-novel category "autism", and those who are least likely, since the onset of the DSM, to have ever been mistaken as falling into some other diagnostic category.

Unfortunately, I haven't been able to confirm (or disconfirm) this theory: the epidemiological data has a habit of either not disaggregating degrees of autism, or of conflating moderate autism either with severe autism ("moderate-to-severe" autism) or with "mild" autism ("moderate-to-mild" autism), or of being unclear or inconsistent about whether "high-functioning" autism includes moderate autism. 

But for now at least, I'm left with the impression that the most quintessentially autistic individuals are, ironically, getting drowned out in an epidemic of diagnosis (overdiagnosis?) at both ends of the spectrum.

Might non-speaking individuals with autism be brilliant?

(Cross-posted at FacilitatedCommuniction.org). 

                What if they’ve been wrong, about every single one of them? What if they’re all…brilliant?

The rhetorical question posed by J.B. Handley at the beginning of Spellers—the Spelling to Communicate documercial we reviewed here—is one that reverberates throughout the pro-FC world. How else can we explain the adult-level vocabulary, adult-level sentence structures, adult-level academic and worldly knowledge, and adult-level aesthetic and philosophical insights that spelling on a held-up letterboard appears to unlock in young, minimally-speaking autistics, most of whom have had little formal instruction in literacy or academic knowledge and have appeared to be paying little attention to the world around them?

It turns out that all this time, while we thought he wasn’t listening, he was paying attention to everything.

Or was he?

Minimal speakers with autism are said to have learned Spanish by hearing their siblings practice Spanish homework; physics by overhearing the proceedings of a physics class through the cafeteria wall; current events by listening to NPR; and bookish knowledge by fleeting glances at book pages combined with highly developed peripheral vision[1] and photographic memory[2]. They are said to be extraordinarily attentive, despite appearances to the contrary: able to see what they don’t appear to be looking at and hear what we might assume is too muddled or out of earshot. They are said to be sponges for knowledge and to have extraordinarily capacities for long-term retention.

Of course, as frequenters to this blog well know, there is an alternative explanation: those who hold up the letterboards and prompt the “spellers” are the ones controlling the messages. The adult-level vocabulary, sentence structures, knowledge, and insights are coming from the facilitating adults, not from their minimally-speaking facilitatees.

But the notion that autistic individuals, non-speakers included, have somehow acquired extraordinary skills on their own, without formal instruction, and without appearing to pay attention, has some basis in reality. And by examining that reality and its limits, we can better understand the fallacies behind the FC-friendly understanding of “they’re all brilliant.”

The reality is that some autistic minimal speakers do acquire some extraordinary skills on their own, just not the ones that FC proponents cite; and that some autistic minimal speakers may be considered brilliant, just not in ways that FC proponents say they are.

For example, anecdotes show very young, minimally speaking autistic individuals, without obviously having paid any attention to their environments, seemingly picking up information about where to find specific objects and how to use them. In The Siege, for example, Clara Park recounts her surprise when the minimally-speaking Jessica Park (at around two or three years old) demonstrated that she had learned the remote, back-room location of the house pencil sharpener and what it was used for. When Jessy’s pencil broke, she put it in her mother’s hand and escorted her through three rooms to the sharpener. “I had not known she knew there was a pencil sharpener, let along its location and its purpose,” Park writes. “If she knew this, how much else did she know?” (Park, p. 12). Plenty, as it turns out. Jessy also demonstrated the ability, without instruction, to use a record player (p. 82), to locate C# on the piano (to request that her mother play a specific part of a Mozart sonata) (pp. 80-81), and to categorize polygons (p. 202).

Similar anecdotes show other minimally-speaking autistic children picking out specialized tools like apple slicers from crowded store shelves and then (assuming their parents oblige them with the purchase) using these tools appropriately at home—without any help and seemingly never before having seen them in use. Still other anecdotes show autistic children able to find their way back to locations they were taken to just once or twice before, this time on their own and many weeks later, seemingly without having paid attention to the complex route involved in getting there.

Perhaps the most common anecdotes of autistic self-teaching involve letter and word recognition and spelling skills. Amy Lutz, for example, recounts how her minimally speaking son, at age four, was able to spell phrases like “FBI WARNING” in chalk on the driveway “without ever having been taught.”

Do these anecdotes suggest that autistic individuals have a general ability to pick up facts and skills on their own, often without seeming to pay attention? Are they enough to explain the adult-level vocabulary, sentence structures, academic and worldly knowledge, and aesthetic and philosophical insights that many non-speaking individuals purportedly generate, via FC, starting in their early teens?

Sadly, no.

First, there’s the question of when we’re justified in saying that someone is “seemingly not paying attention.” We can really only say that someone appears not to be paying attention if we’re actually watching them at the moment in question. It’s not that easy to keep constant track what someone is paying attention to, and we tend to underestimate how much we miss. The attention of other people that we’re most aware of is the attention they pay to us while we’re paying attention back to them. It’s much harder to track the attention someone pays to us when we’re not looking, or the attention they pay to things other than us. We see precisely this play out in another of Park’s anecdotes: one in which it’s clear that Jessy must have been sneaking a number of glances at what Park was doing, even if Park wasn’t aware of it:

[W]ith paper and pencil I lay low bedside her—she crayoning on her paper with random scribbles, I doing the same. For a normal adult, scribbling soon palls; after a while I made circles, as well as a face or two and a couple of fish. Elly [Jessy] paid not attention and wen on scribbling.

The next day, however, she did not scribble. She made her first closed figures. Three days after I had made a cross, she made one. (p. 10)

Jessica Park in The Siege

There’s a second problem with the notion that autistic individuals have a general ability to pick up facts and skills on their own. All of the above examples involve very specific sorts of learning: either direct observation (even if it’s observation that goes undetected by others), hands-on exploration, or non-verbal reasoning (spatial and mechanical reasoning). But the overwhelming majority of knowledge and skills can only be learned through a very specific sort of attention: joint attention. This is the sort of attention that is least likely to go unnoticed, because it’s two people attending to the same thing, often consciously so.

So there are two sides to the “seeming inattention” that accompanies so much of non-speaking autism. On the one hand, parents and others can easily exaggerate how pervasive it is and be unaware of how much of the time the child is actually attending to and learning from the environment. On the other hand, “seeming inattention” is an red flag that the child is rarely engaged in those joint attention moments that are so crucial for learning language and verbal knowledge (See What is Joint Attention and How It Relates to FC).

That doesn’t mean that one cannot develop quite an impressive array of skills non-verbally and without joint attention, through direct observation, hands-on exploration, non-verbal reasoning, and seeming inattention. Examples of such skills, seen in many autistic non-speakers include that ability to:

• rapidly complete large jigsaw puzzles based on shape alone, with the pieces turned upside down.
• ace non-verbal, visual pattern-based cognitive assessments like the Ravens Progressive Matrices.
• reproduce complex objects and scenes through drawing or painting, often from memory.
• perform complex arithmetic operations, including long division.
• spell phrases like “FBI WARNING” (without understanding what they mean)

But the knowledge that facilitated individuals are said to have somehow sponged up on their own crucially involve language: whether the spoken language of NPR, Spanish-practicing siblings, and physics through the cafeteria wall, or the written language of books. Not only is there no evidence that non-speaking facilitated individuals have acquired this knowledge (only message-passing tests would establish this); there is also no plausible route to the acquisition of this knowledge, given what we know about the impairments in language comprehension in minimally-speaking autism (see our discussion of comprehension in this post). And while non-speaking autistic child may be able to spell sophisticated phrases like “FBI WARNING”, he is unlikely to understand its meaning.

It’s absolutely possible to have a fully intact, even brilliant mind that is limited only by social deficits and the resulting failure to pick up language. But language limitations limit one’s ability both to access academic and worldly knowledge, and to express aesthetic and philosophical insights.

Many of them may be brilliant, but they are probably not the authors of the “brilliant” messages that FC-proponents attribute to them.

--------

[1] For a discussion of the limitations on peripheral vision when it comes to reading, see this recent post.

[2] For a discussion of the limitation of photographic memory when it comes to reading, see this post.

Highlights from this month’s ASHA conference

A couple of weeks ago, before the Thanksgiving festivities, I went up to Boston for the American Speech Language Hearing Association Convention, to present, along with Bronwyn Hemsley, Howard Shane, and Ralf Schlosser, a talk entitled “Conceptualizing and Upholding a Communication Bill of Rights for Individuals who are Minimally Speaking.” These rights, of course, include the right to evidence-based communication methodologies, as opposed to one or another variants Facilitated Communication.

While there, I attended a few other talks. One of these was an alarmingly jam-packed talk on a fashionable new theory of language learning known as Gestalt Language Processing. Some individuals, especially those with autism, are purportedly a type of person known as a “gestalt language processor,” otherwise known as GLPs. What this theory adds to the long-standing recognition that many language-impaired individuals with autism resort to echolalia before acquiring basic vocabulary is… unclear to me.

Except in as much as Gestalt Language Processing Theory insists that echolalia is a building block of the language acquisition process, as opposed to a product of associative learning that clever therapists have long tried to shape into more meaningful communication—long before Gestalt Language Processing proponents started telling them that that’s what they should be doing.

And except in as much as Gestalt Language Processor purportedly means something more mystical than someone who takes a while to get beyond associative mappings between oral patterns and situations to intentional, linguistic communication.

But these days, we’re all about Gestalt: holistic thinking, the Whole Child, the big picture. So Gestalt Language Processing resonates. And it’s therefore not surprising that the two GLP talks were very well-attended—one of them even filling up the overflow room—even though the empirical data offered up in support of any of the various non-obvious claims was exactly zero.

Another popular presentation topic, at least as far as ASHA’s gatekeepers were concerned, was Structured Word Inquiry. A group of SWI proponents were awarded three different sessions. I only attended the last one, which had been assigned to the latest time slot and therefore was not perhaps as well attended as the others. Here I heard the usual evasions regarding how exactly SWI’s trademark learning tasks—morphological analysis and investigations via etymological dictionaries—help novice readers decode basic words like “cat” and “mat”, as well as the usual confusion of decoding skills with encoding skills (spelling), and the usual failure to explain what exactly students get out of using word matrices to “build words.” Taking words apart may help understand their meanings, but what does building words up do?

I was tempted to ask two questions, but refrained:

1.       Why does SWI make a distinction that no one else makes between historical roots and what it calls “bases” (such that the historical root in “electricity” is Latin “electrum” or Greek “ēlektron”, meaning “amber”, while the “base” of "electricity", which most people consider its route, is “electric”) at the same time that it broadens the concept of etymology to include stuff that no one else would include: that is, not just the origin of words, but contemporary coincidences like the “ear” in “hear”?

2.       How does SWI’s “word sums” (re + sign + ation à resignation) handle ambiguous words like “unlockable”?

Another overflowing talk I attended was “The Conundrum Behind the Missing Autistic Girls: Masking, Double Empathy, and Theory of Mind.” This talk echoed the oft-heard claim that girls are underrepresented in autism diagnoses because they’re better at masking. While critiquing the DSM for including Theory of Mind deficits in its latest criteria for autism (Is that true? I’m not seeing this anywhere), it finds justification for the notion that masking is common in autism in the following statement that is included in the DSM:

Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).

“Masked by learning strategies”, of course, is not the same as the deliberate masking of social eccentricities in order to “pass” as “neurotypical”—the latter sense of “mask” being that promoted by those who claim that girls are underrepresented in autism diagnosis. The underlying assumption, to the extent that there is a coherent, underlying assumption, seems to be that autistic girls are more driven/able to “pass” themselves off as typical girls than autistic boys are driven/able to pass as themselves off as typical boys.

The talk also discussed the research on Double Empathy, which, as I discuss in my book Students with Autism, to the extent that it holds up at all, holds up only with high functioning individuals who share similar interests.

The general thrust of the talk seemed to be the increasingly popular notion that autism, for all the masking, does not involve social deficits, but rather anxiety and an insufficient sense of “safety” (the purported basis for the restrictive, repetitive behaviors). As evidence for this, the presenters cited late-diagnosed women who seemed to have no trouble empathizing with the needs of their toddlers. Hmm.

The term “presuming competence” also came up, which pretty much tells us everything we need to know about where these people stand with respect to disability rights and autism. As Howard Shane pointed out in our presentation, citing Jason Travers, presuming competence risks undermining the rights of individuals with autism, particularly those who are minimally speaking.

 

 

 

Another Side Effect of FC: Alternative Facts

 (Cross-posted at FacilitatedCommunication.org).

Besides the communication rights violations, opportunity costs, and false abuse allegations emanating from facilitated communication and its variants (Rapid Prompting Method, Spelling to Communicate) there’s another cost: the various ways that FC warps people’s understanding of autism.

In previous posts, we’ve spent a fair amount of time on two types of misinformation that FC et al. perpetrate about autism.

1. The deliberate misinformation perpetrated by FC “professionals” that autism is a disorder of movement and/or of initiation and/or of intentional action rather than a socio-cognitive disorder that severely limits language acquisition.

2. The implicit misinformation emanating from facilitated messages about the sophisticated verbal and literacy skills of minimally-speaking autistics.

Besides these, however, there’s another kind of misinformation about autism that we haven’t yet spent much time considering here. This is the misinformation that is transmitted whenever a facilitated message purports to be a testimonial about how “we autistics” experience the world.

Before I go any further, I should note that not everything that facilitated “we autistics” messages say misrepresents autism. Indeed, some of what’s known about autism has, only naturally, seeped into the consciousness of facilitators and then seeped out subconsciously through facilitation. So long as a diagnostic symptom, or stereotypical autism characteristic, isn’t problematic for FC, it can freely, and indeed frequently does, show up in facilitated messages.

Only about half the diagnostic criteria, Category A of the DSM-5 criteria, are problematic for FC: those pertaining to deficits in social awareness and social interaction. That’s because intact social awareness and social interaction are prerequisites for the high levels of social awareness and language skills on display in FCed messages. But symptoms from the other half of the diagnostic criteria, Category B in the DSM, aren’t so problematic. That’s because these relate to restrictive/repetitive behaviors and sensory sensitivities/interests: symptoms that don’t inherently challenge the validity of FCed messages.

Accordingly, some “we autistics” messages have discussed a preference for sameness and routines, a detail-focus, an intense interest in letters and words (aka “hyperlexia”), an enjoyment of puzzles, anxiety-provoking sensory sensitivities, and calmness-fostering obsessions. Inasmuch as these are characteristics of autism that have been verified independently of FC-generated messages, their repetition in FCed messages is harmless. On the other hand, such messages may contribute to a warped understanding of the specific person being facilitated (who may, for example, not actually have any interest in letters).

Somewhat more concerning among facilitated “we autistics” claims are those that repeat the “we autistics” claims made by independently communicating autistics. In Thinking in Pictures, for example, Temple Grandin describes how when she hears the word “Great Dane,” she doesn’t visualize an abstracted Great Dane, but instead sees images of every Great Dane she’s ever met. Facilitated messages from Carly Fleishman have made similar claims about people’s faces and about how in autism “all the images come at us at once” (Fleischmann, p. 376). While some researchers have observed what’s called “stimulus over-selectivity” in autism, whereby individuals with autism appear more likely to notice and remember details than general features, there is no evidence that Grandin’s testimonials about being hit with a large number of specific images (e.g., of Great Danes) describe a general characteristic of autism.

Similarly, claims made by the autistic savant Daniel Tammet (2007) about how he sees numbers as shapes, colors, and textures may have been one of the driving forces behind the frenzy of claims about synesthesia by facilitated autistic individuals (discussed in this post), but there is no evidence that synesthesia is any more common in autism than outside of it.

Some of these facilitated “we autistics” claims, however, go further and are commensurately even more detached from reality. In the sensory arena, one could easily get the impression from some of the facilitated “we autistics” messages that being autistic is like tripping on LSD. Sometimes it’s a bad trip, as suggested by one of Carly Fleishmann’s facilitated messages:

Autism feels hard. It’s like being in a room with the stereo on full blast. It feels like my legs are on fire and over a million ants are climbing on my arms (pp. 233-234).

A facilitated message attributed to Naoki Higashida (of The Reason I Jump) is similarly trippy:

It’s not quite that noises great on our nerves. It’s more to do with a fear that if we keep listening, we’ll lose all sense of where we are. At times like these, it feels as if the ground is shaking and the landscape around us starts coming to get us, and it’s absolutely terrifying (Higashida, p. 51).

But in another of Naoki’s facilitated messages the autism trip assumes a more positive shape:

Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we’re not with anyone, but we’re always in the company of friends. (Higashida, p. 60)

Many of the messages attributed to Naoki give the impression that time, in particular, is psychedelic—or, at least, experienced by autistic people completely differently from how it is experienced by the rest of humanity.

For us, one second is infinitely long—yet twenty-four hours can hurtle by in a flash. (Higashida , p. 63)

We who have autism, who are semi-detached from the flow of time…” (Higashida , p. 67)

[W]e are a different kind of human, born with primeval senses. We are outside the normal flow of time.” (Higashida , p. 71).

[W]e are more like travelers from a distant past (Higashida , p. 111)

These and other “we autistics” claims seem to stem from some combination of:

1. Attempts by non-autistic people to exoticize autism (much as we Westerners used to exoticize the East)

2. Attempts by non-autistic people to endow some of the harder-to-explain behaviors of minimally-verbal individuals with some sort of higher-level purpose, and

3. The effects of some of the more contagious memes emanating from 1 and 2.

For example, there’s this facilitated message from Carly Fleischmann about stimming, or self-stimulatory behavior:

Drs. have the definition of stimming wrong. Stims are when you make or create output to block sensory input or overload. (Fleischmann, p. 376)

And on self-injurious behavior, Carly is cited as saying that she slaps herself to “stop herself from doing something she knows she’s not supposed to do.” (Goldberg & Putrino, 2009).

Regarding another common autistic behavior, wandering off, there’s this message, attributed to Naoki:

We get swallowed up by the illusion that unless we can find a place to belong, we are going to be all alone in the world. Then eventually we get lost, and have to be escorted back to the place we were at, or the person we were with, before. (Higashida, p. 93)

A number of messages attributed to Carly Fleischmann address another common autistic symptom, appearing not to pay attention:

I listen to everything… If a TV is on and I am in another room, I still listen to it or if people are talking I like to hear what they are saying even if they are not talking to me. Like I say all the time, just because it does not look like I am paying attention does not mean that’s the case. (Fleischmann, p. 343).

Elaborating this notion, Carly purportedly has this to say about why autistic individuals look away from people’s faces:

The more I look someone’s face, the more pictures I take. Because I take so many pictures, my brain or, as in my example, the camera gets full. I am no longer able to process the pictures or images and I am forced to turn away. That is way, for most people with autism, you will see their eyes wondering of face moving in a different direction when you are talking to them. (Fleischmann, p. 365).

Addressing a question from a mother about her son, Carly reportedly types:

When I was young I couldn’t look directly at things. I looked at the corner of my eyes and even though u think he’s not looking he is.

The theme that emerges from these facilitated messages is that “we autistics” are attending to everything, including people’s words and faces, even if it looks like we aren’t: the opposite of what the research has shown.

“We autistics” messages also contradict research showing autism to involve challenges in processing information, especially complex information (Williams et al., 2006). As Carly purportedly says:

Doctors would like to tell you that we have a hard time processing information. It’s not really true, our brains are wired differently. We take in many sounds and conversations at once. (Fleischmann, p. 322).

In addition, “we autistics” messages contradict research showing autism to involve major difficulties with linguistic comprehension, including reading comprehension. Here, for example, are two messages attributed to Naoki:

The reason we need so much time isn’t necessarily because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads… Once our reply has disappeared, we can never get it back again. (Higashida, p. 18)

Some of you may think we read aloud with a strange intonation, too. This is because we can’t read the story and imagine the story at the same time. Just the act of reading costs us a lot of effort—sorting out the words and somehow voicing them is already a very tall order. (Higashida, p. 17)

The implication of this last message is that an autistic individual who reads aloud in a way that suggests lack of comprehension nonetheless does understand when reading quietly to him or herself.

Finally, “we autistics” messages contradict the definition of autism as a social disorder—along with all the research supporting this. Here are three more messages attributed to Naoki:

Our feelings are the same as everyone else’s, but we can’t find a way to express them. (Higashida, p. 21)

The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening. (Higashida, p. 27)

We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable. (Higashida, p. 44)

Collectively, most of the above messages are FC-friendly. They suggest that what might look like signs of an absent intellect actually serve a higher-level purpose. They suggest, as well, that autistic individuals are attending to language and comprehending it, and attending to information and processing it. They say, explicitly, that autistic people are at least as sociable and empathetic as the rest of us. And they offer, finally, an explanation (really, a pseudo-explanation) for the sophisticated linguistic, social, and intellectual content of so many facilitated messages. Of course, the underlying reasoning is circular, since facilitated messages that say things that support the validity of FC are valid only if FC is valid.

A few more FC-friendly “we autistics” messages on various topics include:

1. A message attributed to Naoki reinforcing the FC-friendly notion that autism involves difficulty controlling one’s body:

[W]e don’t know our own body parts so well (Higashida, p. 33).

2. Another message attributed to Naoki about how we should ignore the spoken words of autistic individuals, which often are at odds with the messages that are facilitated out of them:

Please don’t assume that every word we say is one we intend.” (Higashida, p. 19)

3. A message, attributed to Carly, about why she types with only one hand (the one-handed typing that characterizes FC, as we’ve noted, is easier to cue than two-handed and, especially, ten-finger typing):

I had a hard time using both hands and if I would bring my left hand up to help me type I found it got in trouble. So I would concentrate not only on typing but on keeping my hand down and out of trouble.” (Fleischmann, p. 368).

4. Another message attributed to Carly about how she has a photographic memory (which would explain why facilitated individuals don’t exhibit reading behaviors when they’re actually still reading—something I discussed, along with the non-existence of photographic memory, in one of my recent posts).

I have a photographic memory that allows me to look at an image or a page of a book and memorize it in seconds.” (Fleischmann, p. 383)

5. A message, attributed to Tito Mukhopadhyay, that supports some of the contorted reasoning made in support of the FC variant known as the Rapid Prompting Method, “invented” by Tito’s mother:

[E]ach Autistic person tends to develop one particular sense organ through which he tries to perceive the situation. (Iversen, p. 70)

6. Finally, a message, attributed to Grant Basko at a webinar sponsored by the National Institute of Deafness and Communication Disorders (screenshot below), about how much of what people consider to be autism symptomology is actually the result of the trauma of not being able to communicate:

I have worked for years to overcome my trauma responses. However, I wish I had been able to work with researchers who were willing to consider that significant trauma are often unfairly folded into a list of autism symptoms. (Blasko, 2023).

This last message is part of a more concerning trend: FCed messages that call on researchers to include FCed individuals as research collaborators. Other FCed messages along these lines are found in a recent commentary in Time Magazine, attributed to Hari Srinavasan, entitled Who Autism Research Leaves Out. This commentary includes a call for technology to address the purported movement challenges faced by autistic people.

 [W]hy not explore technology that allows for movement for those with autism, similar to neuroimaging equipment used in sports injuries or movement-disorders such as Parkinson's?

Given that autism is not a movement disorder, this would be tremendous waste of resources.

Besides wrong-headed advice for researchers, there’s wrong-headed advice for practitioners. Here is one last facilitated “we autistics” message from Naoki:

People with autism may look happier with pictures and diagrams of where we’re supposed to be and when, but in fact we end up being restricted by them. They make us feel like robots, with each and every action preprogrammed. What I’d suggest is that instead of showing us visual schedules, you talk through the day’s plan with us, verbally and beforehand. Visual schedules create such a strong impression on us that if a change occurs, we can get flustered and panicky. (Higashida, p. 107)

The message I want to get across here is: please don’t use visual things like pictures on our schedules, because then the activities on the schedules, and their times and timings, get imprinted to visually on our memories.” (Higashida, pp. 107-108).

People who don’t live with autism often think that the rest of us won’t be able to understand the plan for the day just by listening. But give it a try, and although we might ask you the same questions over and over, we will get the hand of it, and ask you less and less… being shown photos of places we’re going to visit on an upcoming school trip, for example, can spoil our fun. (Higashida, p. 108).

People who actually work with autistic individuals, as opposed to those who facilitate messages out of them, have found visual schedules to be extremely helpful. They are a core feature of  TEACCH, one of the most successful teaching interventions for autism, and common feature of autistic support classrooms. They are a way to circumvent both the oral language deficits and the aversion to uncertainty that the above paragraphs claim don’t exist.

Spoil our fun? Far from it. What’s actually at stake is the anxiety of the unpredictable, a side effect of the restrictive/repetitive behaviors and interests that comprise Category B of the diagnostic criteria for autism. Following this particular “we autistics” message could cause real harm to vulnerable autistics.

But some autism experts are eager for us to listen to “we autistics” messages like this one. Invoking neurodiversity, for example, Dawson et al. (2022) argue that:

[C]linician training curricula can include writings from autistic individuals on topics such as sensory experiences to ensure that autistic lived experiences are appreciated and incorporated into clinical practice.

To some extent this is reasonable. Considering writings that are clearly authored by autistic individuals can be helpful in informing practice—provided we don’t overgeneralize from one person’s experiences. But in this day and age, where nearly everyone appears to be falling for at least the more subtle variants of FC, it’s easy to imagine that some of the “writings from autistic individuals” will include things like the extremely misguided advice on visual schedules that was facilitated out of Naoki. After all, Dawson herself has apparently fallen for at least one (and possibly two) facilitated individuals.

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REFERENCES

Blasko, Grant. NIDCD (2023, January). Panel of stakeholder perspectives. Minimally Verbal/Non-Speaking Individuals With Autism: Research Directions for Interventions to Promote Language and Communication. National Institute of Deafness and Communication Disorders. https://videocast.nih.gov/watch=48737 (11:00-15:30)

Dawson G, Franz L, Brandsen S. At a Crossroads—Reconsidering the Goals of Autism Early Behavioral Intervention From a Neurodiversity Perspective. JAMA Pediatr. 2022;176(9):839–840. doi:10.1001/jamapediatrics.2022.2299

Grandin, T. (1995) Thinking in Pictures. Doubleday.

Fleischmann, A.  (2012). Carly’s Voice. Touchstone.

Goldberg, A., & Putrino, L. (2009, August 5). Teen locked in autistic body finds inner voice. https:// abcnews.go.com/2020/MindMoodNews/story?id=8258204&page=1Fleishman, Carly’s Voice

Higashida, N. & Mitchell, D. (2013). The Reason I Jump. Random House.

Iversen (2006). Strange Son. Riverhead.

Srinavasan (2023, July 31). Who Autism Research Leaves Out. Time Magazine. https://time.com/6299599/autism-research-limited-essay/?fbclid=IwAR1LvNbl0BjKCwGpGjJpXFAiVTOCVUmZEM2scV4gyJK148YdER2u-ob0EzY)

Tammet, D. (2007). Born on a Blue Day. Free Press.

Williams, D. L., Goldstein, G., & Minshew, N. J. (2006). Neuropsychologic functioning in children with autism: Further evidence for disordered complex information-processing. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, 12(4–5), 279–298. doi:10.1080/09297040600681190