(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.
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
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