Virtual facilitation: a means to independence or yet another high-tech distraction?

 (Cross-posted at FacilitatedCommunication.org).

Vikram Jaswal’s latest, FC-promoting paper—Dr. Jaswal is actually fourth author on this one—reports on the development of a virtual reality (VR) environment for the variant of FC known as Spelling to Communicate (S2C). In this VR environment, a virtual letterboard appears to move in front of a person who wears a VR headset. Via machine learning, Jaswal and colleagues have trained the VR program to move the virtual board in front of the headset wearer in ways that mimic how a human facilitator (known in the S2C world as a “communication and regulations partner” or CRP) moves the letterboard around in front of the person they’re facilitating. The most obvious consequence of this training is that wherever the helmeted person turns, the letterboard follows.

SimonWaldherr (with Midjourney and Photoshop)

In some ways, this paper is just like Jaswal’s other pro-S2C papers. It explores S2C through fancy technology and complex computations while evading direct, low-tech ways to test S2C’s validity, and its sources are either unreliable or don’t say what the authors say they say (more on that shortly).

In other ways, this is not just another pro-S2C Jaswal paper. Indeed, it says nothing new about the validity of S2C, but instead:

• spells out (as it were) a bit more than what we see elsewhere about the rationale of S2C proponents for how and why the CRPs move around the letterboards

• raises questions about what Jaswal, the father of an S2C user, actually believes

• raises the possibility that, depending on how this VR project moves forward, some evidence about the validity of S2C could possibly emerge (possibly).

But before we get to the new stuff, let’s dispense with the old.

This paper, rather than saying anything new about S2C’s validity, assumes from the get-go that S2C is valid. Indeed, in order for there to be any motivation at all for this machine-learning and virtual-reality-building venture, which includes equations like 𝜃 = cos−1 (2⟨𝑞1, 𝑞2⟩ 2 − 1), S2C has to be valid.

That’s because the purported motivation for this venture stems from S2C-generated messages. These, in turn, are valid only if S2C is valid:

[N]onspeakers have expressed to us a desire to transition towards a more independent communication method that relies less on a human assistant, which would provide them with more autonomy and privacy.

Since we have no idea if S2C is valid—because no one involved in using S2C will agree to participate in a simple message-passing experiment—we have no idea if those subjected to S2C actually have the above desires. I suspect, though, that the purported communications, however inauthentic they may be, still express kernels of truth. Those subjected to S2C probably do prefer to communicate independently than to have people thrust letterboards in their faces and repeatedly prompt them. But I’m guessing that their preferences are to communicate via body language, speech, and/or typing (many do speak, as Jaswal himself has acknowledged, and many routinely type when navigating YouTube) rather than to wear VR helmets and find VR letterboards in front of their faces wherever they turn their heads.

But S2C supporters have dismissed these independent forms of communication (especially speech and body movements) as somehow unintentional, insisting, instead, that those subjected to S2C have fine motor challenges that require held-up letterboards. Jaswal is no exception:

As many members of this population have limited fine motor skills, the CRP ensures that the letterboard is positioned in a way that accommodates a user’s unique motor skills profile.

Supporting this claim is one of Jaswal et al.’s unreliable and inaccurate citations: a paper by Fournier et al. (2010). Fournier et al. focus mostly on gross motor phenomena—gate, posture, gestures, and arm wave stereotypy (arm flapping)—and say nothing about pointing. Indeed, as we’ve discussed here, difficulty with pointing doesn’t come up in any of the actual research on motor difficulties in autism.

Relatedly, Jaswal and colleagues claim that “nonspeakers’ hand movements can become more restrictive as they tire from letterboard interactions.” This sounds plausible, but it also sounds more like mental fatigue and/or growing emotional disengagement than like problems with motor control per se. In any case, the authors offer no supporting citations.

Inaccurate/unreliable citations appear in a half dozen additional claims:

• The claim that most minimally verbal people are “not provided with effective alternatives to speech.” The most obvious interpretation of this statement is that people are neglecting to provide minimally verbal individuals with alternative ways to communicate. The authors cite three papers in support:

  • Jaswal’s eye-tracking study, which asserts the same claim but does not back it up except by citing another paper, one by Brignell et al.

  • The Brignell et al. paper, which is about the limited evidence that the alternatives to speech provided to individuals with autism have led to improvements their communication

  • Tager-Flusberg and Kasari, who focus on issues of teaching, noting both the lack of progress that some children make in acquiring language despite intensive interventions, and the fact that AAC devices, unlike PECS (Picture Exchange Communication System), lack specific teaching protocols.

  None of these observations supports the notion that people have neglected to provide minimally verbal people with effective alternatives to speech. In fact, many minimally verbal people communicate effectively using AAC devices.

• The claim that several non-speakers have learned to successfully communicate by pointing to letters. Here the authors cite reports of three FC users: Elizabeth Bonker (who is subjected to the Rapid Prompting Method); Naoki Higashida (another held-up letterboard user); and Dave James Savarese (who is subjected to touch-based FC). None of these individuals have had their communications validated by controlled testing (message-passing tests).

• The claim that “a number of nonspeakers have learned to type independently after commencing letterboard based training.” Here the authors cite videos from the pro-FC website United for Communication Choice. Only two of these show unedited (and therefore potentially reliable) footage. In both, a helper sits within cueing range, stares at the keyboard, provides occasionally oral prompts, and subtly shifts her body while the person slowly selects letters with an extended index finger, such that subtle letter cueing—the sort of inadvertent cueing that can evolve over multiple years of being subjected to FC—cannot be ruled out. True independence, of course, includes being able to execute the skill in question without a designated helper sitting next to you, prompting you, and staring at your output the whole time you’re producing it. (In the second of these videos, interestingly, we see that the person can independently and spontaneously pronounce words, which raises the question of why he’s being prompted to hunt and peck out, over dozens of seconds, what it takes him only about one second to speak).

• The claim that the constant movement of some of those who are subjected to S2C, which might be a sign of restlessness with the procedure and/or a desire to end it, is instead “to cope with their sensory sensitivities.” The only citation for this claim is Naoki Higashia (see above).

• The claim that non-verbal individuals “have reported enjoying using” virtual reality helmets. Here the only citations are two previous papers that include Jaswal as a co-author, but the bigger issue is that these reports could only have occurred through some form of FC, which makes them of doubtful validity.

• The claim that an alternative, independent way to pick out letters—namely via eye gaze, aka “eye typing”—“may be challenging for nonspeakers because of the atypical eye movements that are frequently associated with the condition.” Here the authors cite Little (2018), a paper that says very little about atypical eye movements. Little focuses mostly on atypical visual processing and on diminished following of other people’s eyegazes (a component of joint attention, well known to be impaired in autism). Little cites just a couple of studies that discuss actual issues with eye movement as such, and concludes “While these studies provide some evidence of eye movement problems in ASD and its potential as a biomarker, there are inconsistencies in findings.”

• The claim that some individuals are able to identify letters through peripheral vision. The authors once again cite Little (2018). But Little says nothing anywhere about peripheral vision. As Janyce discusses here, peripheral vision simply isn’t acute enough for picking out letters.

Now to the three things that distinguish this paper from Jaswal’s other pro S2C papers. First, as I noted above, this paper spells out more about what the rationale is, according to S2C proponents, for the movements by the CRPs (communication and regulations partners, or facilitators) of the letterboards. These board movements, purportedly, are designed to adjust to the movements of the facilitated person. And each facilitated person, apparently, has a specific “motor and movement profile,” of which there are, purportedly, three common varieties. As we read in the description of the machine learning sessions:

the CRP who has 10 years of experience working with nonspeaking autistic individuals, emulated [later in the paper, the word “mimic” is used instead] three different common motor and movement profiles she typically encounters in her practice when teaching nonspeaking people to use a letterboard to communicate.

Second, this paper, more than Jaswal’s other papers, raises questions about what Jaswal actually believes. That’s because the virtual facilitation process, as described, appears to be a process that is, essentially, message-blind. The virtual board movements don’t seem to involve any letter-specific movements—i.e., they don’t seem designed to cue specific letters. And the VR doesn’t seem to involve any stored information about which messages should be typed out in which situations—i.e., it doesn’t seem to “know” what the “correct” answers are. Instead, the basis for the machine learning of the virtual letterboard movements, as described by the authors, appears to only involve data about the physical configuration of the user’s body:

The positions and rotations of the user’s head, index fingertip, palm, and the physical board are collected. This data is used to train a BC Machine Learning (ML) model that learns a unique placement policy (of the physical letterboard) personalized to the user’s unique motor skills profile and movements.

Were such a virtual facilitation—based, that is, only on the physical configuration of the user’s body, and free of any additional facilitation by humans—tried out on an S2C user, it could amount to something close to a message-passing test. If the virtually facilitated user types out only nonsense sequences and/or words and phrases that they’re already able to type out on their own, this would effectively invalidate their S2C-mediated communications. But if the virtually facilitated user types out spontaneous, contextually appropriate messages similar in style, sophistication, and content to what they produce through S2C, this would suggest that their S2C-mediated communications might be authentically theirs.

Does Jaswal, the father of an S2C user, really want such a quasi-message-passing scenario see the light of day? Is it possible—despite his resistance to rigorous message-passing tests, despite his constant detours around simple, straight-forward experiments into obscure thickets of technology, engineering, and mathematics, despite his faulty experimental designs, faulty citations, and faulty conclusions—that Jaswal actually believes that S2C is valid?  

But then there’s this question: what are the next steps before Jaswal considers this VR replacement of human CRPs ready for prime time?

Some of these next steps appear to maintain the purely physical basis for the virtual facilitation:

Future research will expand our evaluation to include more nonspeaking participants. We will explore models that consider additional environmental features such as a user’s orientation relative to the room or the presence of other individuals in the space

But what Jaswal et al. leave unanswered is how the final product is going to address what they claim is another essential role of the CRP. Beyond simply adjusting for the user’s physical behavior:

The CRP also offers attentional and regulatory support, redirecting the user’s attention to the letterboard when necessary and encouraging them to complete their thoughts.

So is the final VR product going to involve VR facilitation that somehow redirects attention, provides regulatory support, and encourages completion of thoughts? Or will there still be a human involved: someone who supplements the VR’s physical adjustments with these potentially letter-cueing, message-controlling facilitator behaviors?

One thing is certain: whatever’s coming next will be a can of worms—in ways that we probably can’t fully imagine.

REFERENCES

Beals, K. (2021). A recent eye-tracking study fails to reveal agency in assisted autistic communication. Evidence-Based Communication Assessment and Intervention, 15(1), 46–51. https://doi.org/10.1080/17489539.2021.1918890

Brignell A, Chenausky KV, Song H, Zhu J, Suo C, Morgan AT. (2018). Communication interventions for autism spectrum disorder in minimally verbal children. Cochrane Database of Systematic Reviews, 11. Art. No.: CD012324. DOI: 10.1002/14651858.CD012324.pub2.

Fournier, K. A., Hass, C. J., Naik, S. K., Lodha, N., & Cauraugh, J. H. (2010). Motor coordination in autism spectrum disorders: a synthesis and meta-analysis. Journal of autism and developmental disorders, 40(10), 1227–1240. https://doi.org/10.1007/s10803-010-0981-3

Little, J. (2018). Vision in children with autism spectrum disorder: a critical review. Clinical and Experimental Optometry, 101(4), 504–513. https://doi-org.proxy.library.upenn.edu/10.1111/cxo.12651

Nazari A., Alabood L., Feeley K.B., Jaswal V. K., Krishnamurthy, D. (2014). Personalizing an AR-based communication system for nonspeaking autistic users. Proceedings of the 29th International Conference on Intelligent User Interfaces, 731–741

Tager-Flusberg, H., & Kasari, C. (2013). Minimally verbal school-aged children with autism spectrum disorder: the neglected end of the spectrum. Autism research : official journal of the International Society for Autism Research, 6(6), 468–478. https://doi.org/10.1002/aur.1329

Disability-Ability Matching Test

Map the three disabilities to the following purported sets of abilities.

Disabilities:

1. Attention deficit hyperactivity disorder (ADHD)
2. Autism
3. Dyslexia

Ability Set 1:

• Curiosity
• Great imagination
• Ability to figure things out; gets the gist of things
• Eager embrace of new ideas
• A good understanding of new concepts
• Surprising maturity
• A larger vocabulary than typical for age group
• Enjoys solving puzzles
• Talent for building models
• Excellent comprehension of stories read or told to him

Ability Set 2:

• Creativity 
• Divergent thinking

Ability Set 3:

• A deep thinker
• A prolific writer drawn to poetry
• Highly intelligent
• Sees things at multiple levels, including her own thinking processes
• Analyzes existence, the meaning of life, and everything, continually
• Serious and matter-of-fact in nature
• Doesn’t take things for granted
• Doesn’t simplify
• Everything is complex
• Often gets lost in own thoughts and “checks out” (blank stare)

Answers at:

https://psychiatry-uk.com/adhd-pioneers-of-divergent-thinking/
https://www.dyslexia.yale.edu/dyslexia/signs%20of%20dyslexia/
https://the-art-of-autism.com/females-and-aspergers-a-checklist/

See also:

DeBoer, Freddy, The Gentrification of Disability

A psychologist overlooks the science and a journalist, the full story

 (Cross-posted at FacilitatedCommunication.org).

Part I: The Psychologist

When it comes to facilitated communication, Psychology Today has a mixed record. While a number of its contributors (Amy Lutz, Stephen Camarata, Bill Ahearn, and Scott Lilienfeld) have spoken out against it, others (Chantal Sicile-Kira, Robert Chapman, and Susan Senator) have, to one degree or another, expressed support. Recently joining the second cohort (which consists of a neurodiversity philosopher, an autism consultant, and an autism parent) is a psychologist: Debra Brause, PsychD.

Brause’s post, entitled Nina: A Nonspeaker Who Found Her Voice, showcases a nonspeaking autistic individual who purportedly describes her feelings of being locked inside and unheard by others until she started “using a method called spelling to communicate (S2C), which enables her to share her story.” S2C has also enabled Meehan’s communication partners to conclude that “she is a deep thinker and cares about ‘every single thing’” and also that she’s bilingual:

Not only did Meehan know English, but likely due to exposure to her grandmother’s native language, one day, Meehan spelled in Spanish, “I’m bilingual. I know how to speak Spanish, too.”

Brause is aware of the controversy surrounding facilitated communication (FC) and variants like S2C and RPM (Rapid Prompting Method). But she’s nonetheless confident of her claims. Nor are all of them unreasonable, as we see in her first two bullet points:

• Access to communication is a fundamental human right.

• Misconceptions about nonspeaking autism can be harmful.

Indeed; I think we can all agree on those.

But then come the next two bullets, which are, in fact, two harmful misconceptions about nonspeaking autism:

• Spelling to communicate (S2C) can be a powerful tool for nonspeaking autistic people.

• Neurotypicals should presume competence and become helpful communication/regulation partners to nonspeakers.

In fact, as a careful read through this website’s research pages (see here and here) will show, all the available evidence indicates that in S2C, as with all other forms of facilitated communication (FC), the facilitator, not the person with disabilities, is controlling the messages. S2C, thus, quite far from being a powerful communication tool for nonspeakers, is likely a major suppressor of their communication rights, as well as being a major detractor from evidence-based therapies that boost—however slightly—the ability of these vulnerable individuals to communicate authentic messages independently.

Additional harms can come from the specific messages and associated desires that are attributed to these individuals. Consider this:

Recently, Meehan met another local speller named Wynston. They started hanging out, and Wynston asked her to be his Valentine. They are forming a deep and loving emotional connection. Through spelling, they can fully express their feelings for each other, and they hope that other spellers out there know that they can build meaningful relationships, too.

What if Meehan actually has no interest in having a relationship with Wynston, and/or vice versa? What happens if Meehan and Wynston are forced to spend time together, even live together, against the will of one or both of them?

And what if Meehan actually has no interest in the causes that are attributed to her through her facilitated output and would rather be doing something entirely different:

She wants to create a school where spellers thrive. She is asking for neurotypicals to see what nonspeakers are capable of and give them the chance to have meaningful opportunities in society. She has created The Nina Foundation to educate the world about autism and raise awareness about autistic people’s ability to comprehend the world around them. According to Meehan, “There is a revolution happening through unlocking the voices of all nonspeakers.”

Nor is presuming competence the right move for neurotypicals who work with nonspeakers on communication—or, for that matter, for anyone who works with anyone on anything. If I were to presume that my special ed students are already competent, say, in understanding what constitutes an autism-friendly learning environment, I would do them (and their future students) a huge disservice. And if certain of my college mathematics professors hadn’t presumed, say, that we students were already competent in abstract math proofs, we all would have become better at constructing and applying these proofs on our own. What good teachers presume isn’t their students’ competence, but their capacity to learn what they don’t yet know.

Brause, however, is confident that we skeptics are wrong. One of her criticisms is that familiar straw man: “there is a common misconception that autistic nonspeakers do not have cognitive ability.” But it’s well known that autistic nonspeakers can excel in nonverbal tasks like puzzles, math, art, and music. What autistic nonspeakers don’t excel in is language. That’s because autistic nonspeakers—unlike nonspeakers with paralysis or deafness—are limited, by their very autism, in their automatic attention to voices and faces and in their ability to figure out the meanings of words.

Another of Brause’s criticisms repeats the “presume competence” fallacy:

When we assume that those without a voice are not verbal, we demean their capability and fail to uncover the intelligence they hold inside.

But the best way to uncover hidden intelligence in those without a voice is to provide evidence-based language instruction; not to assume that they’re already verbal.

Brause also repeats the popular but evidence-free pro-FC claim that apraxia impedes the ability to demonstrate comprehension and that S2C addresses this:

Due to apraxia, a motor movement disorder, many autistic people cannot demonstrate what they understand. Apraxia is a disconnection between the brain and the body, and autistic people often struggle to get their bodies to do what their minds intend. Nonspeakers cannot show their verbal acuity without the motor skills to convey their intelligence.

(For a discussion of why this claim is evidence-free, see this post and its follow-up).

Relatedly, Brause claims that S2C helps these theoretically apraxic individuals bypass their motor challenges:

Spelling to communicate teaches individuals with motor challenges the purposeful motor skills necessary to point to letters as a means of communication. The goal is to achieve synchrony between cognition and motor.

This claim, repeated though it is throughout the promotional material for S2C, is also evidence-free.

Another common pro-FC claim echoed here by Brause is that AAC devices are limiting:

The trouble with many AAC devices is that they are limited to icons and don’t represent natural speech. The devices rely on limited choices that can perpetuate motor loops (getting stuck on one icon or word) that may not reflect what the person really wants to say.

In fact, as we point out most recently here, most electronic AAC devices have ABC or QWERTY keyboard modalities that allow open-ended communication through independent, un-facilitated typing.

Interestingly, the only evidence that Brause cites for the validity of S2C is Jaswal et al.’s highly flawed eye-tracking study, and the only specific item she pulls from this article is the following undigested quote: “Our data suggest that participants actively generated their own text, fixating and pointing to letters they selected themselves.” For critiques of the study’s methodology and conclusions, see here and here.

Rather than citing any evidence that actually supports S2C—there isn’t any—Brause mentions its “rigorous training” and its “prompt hierarchy.” Alas, rigorous training does not a valid practice make. And prompt hierarchies, in the worlds of S2C and other FC variants, simply mean prompts that grow more subtle over time (as cues naturally do). Indeed, this notion is one of the biggest distinctions between FC and evidence-based therapies like ABA. In ABA, prompts are eliminated as soon as possible so that the person learns to perform the targeted skill spontaneously (e.g., communicating an unrehearsed message) without the therapist(s)/assistant(s)/facilitator(s) being present. While such independent, spontaneous performances of previously unmastered skills are routinely achieved in ABA, the same has never been documented in S2C or any other FC variants.

Brause’s other substitute for evidence, in particular for the claim that the S2C facilitator is “never influencing the content of the speller’s message”, is the movie Spellers. (For our critique of this highly problematic S2C documercial, see here).

Elaborating on the question of facilitator influence, Brause is convinced that S2C and RPM are essentially different from traditional FC:

The concern amongst skeptics is that the facilitator is the one conveying their own thoughts. Rapid prompting method (RPM) and S2C, however, differ from FC in that the facilitators do not typically support the child’s hand or arm and instead hold or move a letterboard.

It doesn’t seem to occur to Brause that prompts and letterboard movements (combined with facilitator judgments about which letters have been selected) are just as powerful at guiding messages as supporting a hand or arm. For examples of how this works, see, again, our review of Spellers.

Brause does acknowledge that the American Speech-Language-Hearing Association (ASHA) has a position statement against S2C—though she mentions only the second of ASHA’s two concerns, “lack of scientific validity,” and mysteriously omits its first concern, “prompt dependency.” Brause proceeds to suggest that what’s at issue is simply a lack of evidence and that this lack of evidence is merely the result of insufficient interest and insufficient funding:

This is an emerging field, and having sufficient research means having the necessary interest from the public and funding from large institutions.

Omitted from Brause’s discussion are the following points:

• Many of us are eager to conduct rigorous message passing tests on interested S2C practitioners; the lack of interest is on the part of practitioners, who uniformly refuse to participate in rigorous message passing tests.

• Rigorous message passing tests are the only way to determine who is authoring the messages and therefore whether S2C is (a) a valid mode of communication or (b) a communication-suppressing, human-rights-violating procedure.

• Rigorous message passing tests are inexpensive and do not require funding from “large institutions.”

In assuming that rigorous research has to be expensive, Brause may be thinking of Jaswal’s eye-tracking study, and/or his more recent flashing letters study, both of which use fancy equipment that might, to untrained eyes, lend a veneer of rigor to his work, but which actually bypass straightforward, reliable measures of authorship and instead generate highly indeterminate results.

Brause concludes by citing the criticisms on the pro-FC website United for Communication Choice of ASHA’s position statements against RPM and S2C as “flawed and dangerous,” singling out this quote from speech-language pathologist and “family communication coach” Gabriele Nicolet:

In ASHA’s own language, evidence-based practice includes the inclusion of people’s clinical and lived experiences. To deny someone’s lived experience and call it a hoax is the opposite of what that organization stands for. It’s abhorrent.

The answer that pro-RPM and S2C practitioners refuse to explore, of course, is the question of what is and isn’t indicative of a facilitated person’s lived experience.  And until we conduct rigorous message-passing tests to determine who is authoring the RPM and S2C-generated messages, that question will remain unanswered.

So will the question of whether Meehan actually wants to be in a relationship with Wynston.

Part II: The Journalist

When I first heard that Blocked and Reported, which bills itself as a podcast about Internet nonsense, was running a segment entitled Facilitating Communication (with Helen Lewis), I was hopeful that we’d finally have a wide-reaching, if somewhat offbeat, broadcasting of some powerful FC skepticism.

As it turns out, the show was somewhat of a missed opportunity.

The main problem was that journalist Helen Lewis, a staff writer at the Atlantic, limited herself to traditional FC and to events that occurred many years ago. When going over FC’s early history, Lewis got most of it right—although she referred to Douglas Biklen, who brought FC to the U.S. from Australia, as a “psychologist” and cited one of D.N. Cardinal’s early papers as having positive results for some individuals under controlled conditions (see our critique of that paper here).

Lewis did a pretty good job discussing the ideomotor (Ouija Board) effect and emphasizing the likelihood that FCed messages are entirely controlled by the facilitator—although she claimed, incorrectly, that “Some really did progress to independent communication.” She clarified that that this purportedly successful subset consists of those whose problem “was fundamentally a motor problem,” citing “locked-in syndrome” as her one example. But she added that “You can’t tell just from looking at someone whether they are one of the genuinely locked in people”—neglecting to clarify that “genuinely locked in people,” unlike most of the minimally verbal individuals who are subjected to FC, aren’t born that way and have typically been able to communicate independently prior to whatever injury locked them in.

Lewis went on to discuss such landmarks as the anti-FC exposé Prisoners of Silence, Janyce’s story as recounted in Prisoners of Silence and Janyce’s subsequent anti-FC activism (Lewis is highly appreciative of Janyce!); the pro-FC movie Autism is a World; Dan Engber's New York Times Magazine article about the Anna Stubblefield Case; and, finally, what seems to have been the impetus for this interview: the Anna Stubblefield movie that was released in the UK earlier this year and has yet to air in the U.S.

The closest Lewis comes to acknowledging the newer variants of FC is to discuss David Mitchell’s promotion of Naoki Higashida (The Reason I Jump). She rightfully calls Naoki’s communication a form of FC even though no one touches his arm, noting how suspiciously sophisticated his language is and how much it resembles all the other suspiciously sophisticated FC-generated messages she’s encountered.

But then Lewis suggests that FC is on its way out. She cites the renaming of the Facilitated Communication Institute at Syracuse University (now the Center on Disability and Inclusion), claiming that “it says it doesn’t advocate for things like FC, where there’s ambiguity regarding whether the client or the facilitator is the source of the message.” She apparently didn’t explore the Center’s website thoroughly enough to come across this page, which makes clear that FC is still very much a part of the Center’s activities. Instead, Lewis offers this: “I would say at this point that FC is pretty kind of trashed really.”

Nor does Lewis seem to have any idea of the latest variants of FC that are proliferating all over the country at what appears to be a geometric rate, thanks most recently to that documercial for S2C—which likewise goes unmentioned by Lewis.

Interestingly, Lewis concludes her interview by noting that journalists sometimes get things “catastrophically wrong”, and that, should she ever be caught doing that herself, “it will be a major test of character whether I’ve got the balls to just go ‘Nope, really spooned that one, absolutely sorry to everyone’.”

I’m rooting for Lewis to pass that test.

Autism Acceptance Month--what do we accept these days as autistic?

I fidget.

Clothing labels bother me.

I cover my ears to block out sirens.

I sometimes have trouble reading faces, following conversations, and knowing what to say.

Outside of my private refuges, I'm constantly masking my inappropriate reactions and urges and trying to pass as socially acceptable.

Socially demanding events tire me out.

So does lots of volume and sensory clutter.

I can get so absorbed in high-interest activities that I lose track of time and get highly distressed if interrupted.

I sometimes echo pithy things I heard earlier or "script" lines from movies and TV shows.

In other words...

I'm neurotypical.

And as a neurotypical person, I try to be fully accepting of autistic individuals, including of their right to communicate authentically without having their words, or their status as actually autistic, hijacked by others.

From Literacy to “Support Needs” to “Communication Boards”: How vague guidelines enable non-evidence based claims and practices

 (Cross-posted at FacilitatedCommunication.org).

When you write general guidelines, you need to make clear not just what you’re saying, but what you’re not saying. And to figure out which things, of all the things you’re not saying, you most need to emphasize as things you’re not saying, you need to take a look at who is likely—unwittingly or deliberately—to misinterpret what you’re saying, and in what ways.

In a 2021 article for the Brookings Institute, for example, education scholar Tom Loveless writes about how California’s 1987 English language arts framework got hijacked by the Whole Language movement, an ineffective, non-evidence-based mode of reading instruction that is responsible for much of America’s ongoing reading crisis:

The document did not mention whole language reading instruction, but true believers in that approach put their stamp on the state’s policies during implementation.

More recently, as Loveless reports, the equivocal writing in the 2010 Common Core standards, which aimed at a balance between Whole Language and traditional phonics, has resulted in something similar. In reality, there is no balance: non-phonics-based approaches (most especially the misnamed “Balanced Literacy,” with its “Three Cueing System”) continue to dominate reading instruction.

Here’s the takeaway: if governments want evidence-based reading instruction to predominate, their education standards need to explicitly state which types of reading instruction aren’t evidence-based.

Switching gears rather dramatically, a similar lesson applies to the DSM-5 criteria for autism. One of the most controversial changes in the DSM-5 was its elimination of Asperger’s. Asperger’s, the mildest form of autism, is now folded into what was now a three-tiered “Autism Spectrum Disorder.” The problem lies in how the DSM has defined those tiers, or levels:

• Level 1: “requires support”

• Level 2: “requires substantial support”

• Level 3: “requires very substantial support.”

Only in the fine print do we learn about the nature and purview of this support:

As is evident if you read past the first column, Level 1-3 support needs are defined, not in terms of the general requirements of daily living (organization, self-care, emotional regulation, and so on), but in terms of the two core symptom categories of autism: social communication deficits and restricted, repetitive behaviors. The levels, moreover, are a function of symptom severity.

For social communication/social interaction, for example, we have:

• Level 3: “severe deficits in verbal and nonverbal social communication”; “very limited initiation of social interactions”; and “minimal responses to social overtures from others.”

• Level 2: “marked deficits in verbal and nonverbal social communication”; “limited initiation of social interactions”; and “reduced or abnormal responses to social overtures from others.”

• Level 1: mere “deficits in social communication”; “difficulty initiating social interactions”; and apparently “decreased interest in social interactions.”

[Emphasis mine]

And for restrictive/repetitive behaviors we have, among other things:

• Level 3: “extreme difficulty coping with change” that “markedly interferes with functioning in all spheres”; and “great distress/difficulty changing focus or action.”

• Level 2: “difficulty coping with change” that “interfere with functioning in a variety of contexts”; “distress and/or difficulty changing focus or action.”

• Level 1: “difficulty switching between activities.”

The problem with this presentation is that, unless you read the fine print, it’s natural to assume that “support needs” means something much broader; that it includes support for any kind of need that might arise in the course of daily life—supports that might vary from day to day and from situation to situation. Supports for staying organized and keeping track of your things; for completing your assignments; for difficulties with emotional self-regulation; for fatigue and a need for frequent breaks. Support needs, in other words, that may be only indirectly or tangentially related to being autistic.

Because the DSM specifies the precise characteristics of autism support needs only in its fine print and doesn’t say explicitly what isn’t included as support needs, this much broader interpretation is precisely what some outspoken self-advocates have slapped onto it.  

Some self-advocates, for example, have characterized themselves as having high support needs because of organizational challenges, sensory sensitivities, anxiety, exhaustion after social events, and/or occasional meltdowns. Indeed, according to the Autism Self-Advocacy Network, “Support needs are just things autistic people need help with.”

But here’s the issue. Some of those who are diagnosed as Level 2 or 3 based on more severe core autism symptoms may actually have less anxiety and/or fewer organizational challenges and/or fewer issues with sensory fatigue than some of those who are diagnosed as Level 1, at least at certain times and/or in certain situations. This broadening of support needs beyond what the DSM actually specifies, therefore, both fuzzes up and twists around the autism spectrum.

Imagine a highly verbal individual who might once have been diagnosed with Asperger’s and who views herself as highly anxious or disorganized or easily overloaded with sensory stimuli—especially, say, in large social gatherings or at the end of a long day. This person can now claim to be "as autistic" as a nonverbal individual with profound challenges in social awareness and social reciprocity that affect him every moment of every day. Highly verbal but sometimes overwhelmed individuals who identify as autistic can now claim they have the standing to speak on behalf of their nonverbal counterparts. Finally, FC proponents can now claim that Level 3 autism doesn’t rule out linguistic sophistication, whether in those who are verbal but anxious and overwhelmed, or in non-to-minimal speakers—at least when those non-to-minimal speakers point to letters on held-up communication boards.

Communication boards, coincidentally or not so coincidentally, figure prominently in my final example of guidelines that aren’t sufficiently clear on what they’re not saying. These guidelines come in the form of two documents: a “Dear Colleague” letter from the U.S. Department of Education regarding the need for assistive technology (AT) in special education, and an accompanying document entitled “Myths and Facts Surrounding Assistive Technology Devices.”  Both of these went out on January 22nd of this year. The letter discusses the need for “AT devices and services for meaningful access and engagement in education” and adds that:

The use of AT devices and services is critically important for many children with disabilities as it can greatly improve their educational experience, improve their educational and post-school outcomes, and help develop important skills and abilities. These devices and services must be available, accessible, and appropriate for children with disabilities and their families. We all have a role to play in ensuring access to necessary AT devices and services for children with disabilities. Consider these examples of AT devices for children with a variety of disabilities.

The letter proceeds to list four categories of AT devices, one of which encompasses augmentative and alternative communication (AAC) devices. These are described simply as devices “to assist children with disabilities to communicate with teachers, peers, and their families.” The letter does not cite specific examples of what AAC devices are, let alone what they aren’t. Nor does the accompanying document, “Myths and Facts Surrounding Assistive Technology Devices.” But “Myths and Facts” does elaborate more on the larger category of AT devices, and here’s where the term “communication board” shows up:

Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of a child with a disability.39 Examples of AT include screen readers, adapted daily living devices (e.g., a toothbrush holder), and communication boards.

Unfortunately, however, “communication board” is ambiguous. If you look it up on Google Images, you see:

So far so good: these are all examples of evidence-based AAC devices that can rest on stationary surfaces and that allow users to independently communicate their own authentic messages by pointing to pictures, icons, or words.

But if you add the search terms “Spelling to Communicate” and “S2C” to the “communication board” search, here’s what you get:

Suddenly we see the familiar held-up letterboards of S2C.

And if you add the search terms “Rapid Prompting Method” and “RPM” to the “communication board” search, you get something similar:

That’s because advocates of the variants of facilitated communication known as RPM (Rapid Prompting Method) and S2C (Spelling to Communicate) regularly use the term “communication board” for the letterboards that facilitators hold up to the index fingers of their non-speaking, Level 3 autistic clients.

So the U.S. Department of Education, by failing to specify which sorts of devices are and are not legitimate AAC devices, and by inserting the word “communication board” into its supporting document, provides an opening for supporters of RPM and S2C to claim that the U.S. government is calling for the use of RPM and S2C in schools.

And guess what? Just three days after the release of the Department of Education documents, the disability news journal Disability Scoop released an article entitled “Ed Department Warns Schools Not To Overlook Assistive Technology In IEPs” which opens as follows:

It’s hard to read the caption below the picture, but this is its first sentence: “Mitchell Robins, right, who has autism, points to letters to form words that therapist Anthony Bartell can write down to draft a blog post.”

The article makes no mention of S2C, RPM, or communication boards, and it only mentions AAC in the abstract. Those in the know, however, will instantly recognize in the caption and accompanying image all the tell-tale signs of S2C or RPM, and, in case there’s any doubt left, a quick Google search confirms that RPM is the methodology to which the pictured individual is being subjected.

In faulting the U.S. government and the DSM for being insufficiently clear about what they’re ruling out—whether it’s the Three Cueing System, a generic notion of support needs, and/or all variants of facilitated communication, hijacking all as these variants are of authentic communication—I’m assuming, of course, that the lack of clarity was inadvertent. But in the last case, the rapidity with which the release of the government documents gave rise to a celebratory article showcasing an RPM user (albeit while abstaining from all references to RPM or any other form of facilitated communication)—well, that one has me wondering.

Given how cozy certain sectors of the U.S. government have gotten with the FC lobby (see also the  platforming of FC last year by the National Institutes of Health at the National Institute of Deafness and Communication Disorders webinar on nonverbal individuals with autism, and the inclusion of facilitated individuals as members of the U.S. Department of Health and Human Services Inter-Autism Coordinating Committee), I can’t help but wonder if the inclusion of the word “communication board” in the U.S. Department of Education’s “Myths and Facts Surrounding Assistive Technology Devices” was somehow, shall we say, strategic.