The myths of Autism and the Myth of the Person Alone

Today’s episode of my series of reviews of pro-FC books and movies looks back to 2005 and a book called Autism and the Myth of the Person Alone. Published by NYU Press and authored by Douglas Biklen, best known for bringing Facilitated Communication to the US in the early 1990s, this book attempts to challenge the prevailing scientific understanding of autism. Its evidence? Testimonials about autism that purportedly come from autistic individuals. 

Purportedly is the key word here: all of these individuals communicate by typing, and though Biklen claims that all but one of them have learned to type (or, in some instances, write) independently, all require a helper to sit next to them while they do so. As Biklen puts it, “I found that the contributors could converse fluently with me, but only if their mothers or other trusted, familiar persons in whom they felt confident were nearby.” Each person, furthermore, underwent years of active facilitation in which these trusted, familiar persons maintained physical contact with them during typing. 

While Biklen discloses these key factors, he overlooks one more: the possibility that cues that began as pressure on wrists, elbows, and forearms evolved over the years into subtler and subtler signals. Potential signals include movement cues from held-up keyboards, and visual cues of the sort that have enabled horses like Clever Hans, going back centuries, to stamp out clever answers to questions. Given what we know about the Clever Hans Effect and the ideomotor illusion, we cannot rule out the very real possibility that the book’s testimonials are authored, not deliberately by the individuals with autism, but, unwittingly, by their various helpers.

Biklen makes much of the fact that some of his subjects are able to read out loud the letters and words as they type them, and that one young man can read entire passages he’s typed. Biklen appears to have forgotten that people can learn how to decode printed text into speech without understanding what it means, let alone having authored it.

Nonetheless, emerging from these accounts, along with Biklen’s introductory and concluding chapters, is a relatively consistent take on autism: one that challenges the long-standing, empirically grounded view of autism spectrum disorders as primarily socio-cognitive. As Biklen puts it, the “forcefulness and consistency [of these accounts] should signal clinical researchers to question every assumption brought to the topic of autism.” And so, even as we question the validity of the testimonials as first-person accounts, there’s still plenty to say about the picture of autism that they collectively paint.

Biklen picked as his subjects individuals who were significantly impaired and had poor prognoses, but “who had already stablished themselves creatively (e.g., as writers, public speakers, or artists).” While Biklen concedes that these people are not typical of all autistic individuals, he suggests that they’re similar to “other people I could have interviewed.” The combination of impairment and prognosis, on one hand, and success as writers and public speakers, on the other, makes it unsurprising that FC played an salient role in their vocational trajectories. Accordingly, Biklen briefly addresses it.

While conceding that FC has been problematic and controversial in the past, Biklen claims it’s now been validated. The gold standard for validation, of course, is a message passing test: a test in which the person being facilitated is asked a question to which the facilitator doesn’t know the answer. But Biklen mostly cites studies that eschewed message passing in favor of “linguistic analysis” and “documentation of physical independence”—whatever that means. The three message passing studies he does cite are Cardinal et al (1996); Sheehan and Mantuozzi (1996) and Weiss et al (1996). If two of these sound familiar, it’s perhaps because they also come up in the book by Ralph Savarese I reviewed three weeks ago. All three have serious design flaws and, to repeat what I said earlier, have been outdone by more rigorous studies and systematic reviews–most recently Saloviita et al (2014); Hemsley et al (2018); and Schlosser et al (2019).

As for Biklen’s particular subjects, some of the factors that purportedly justify FC would appear to preclude independent typing from ever being feasible. One individual, for example, has trouble with “sequenced actions such as getting a glass of water, eating food, or taking out his typewriter.” “With but a few exceptions,” Biklen notes, “he cannot do anything that involves more than one action, one step.” Another individual, “when asked to point to an answer from several options… may will her body to point to the answer she knows is correct, but her body may do something else.” According to her testimonial, “Although I know in my head what shapes might correlate, I find it difficult to make my hand point to the right answer.” Biklen proposes that, for people like these, action doesn’t necessarily represent thought. He appears to have forgotten that typing is type of action—and that typing messages involves “sequenced actions” and “more than one step.”

Collectively, Biklen’s discussion and the various testimonials suggest that autism involves a fundamental mind-body disconnect. As corroboration, Biklen cites Kanner’s and Asperger’s long-ago observations of motor clumsiness, along with more recent observations about deficits in body awareness. But these challenges do not add up to the kind of mind-body disconnect in which individuals point to the picture of the cereal box when what they want is pancakes, or to an object other than the one they intend to point to during an IQ test, or why “Doing what someone else expects, when expected, seems to be among the hardest tasks for her to achieve.” One subject is:

“able to say ‘yes’ or ‘no’ to questions” but “If someone asks me ‘’Do you want to go to the bathroom? Yes or No?” I will typically answer with a yes because it is the first word in the sentence.” 

But this “doesn’t mean I do not understand the question.”  She also:

“needs reminders from her staff that not every Lexus car that passes is her mother’s car. She knows it intellectually, but somehow she still yells out her mother Rita’s name when a Lexus passes.” 

Another subject can purportedly sequence mentally all the steps involved in an activity, but, as Biklen explains:

 “even after reviewing the steps, he is frequently unable to commence with the very first step, no matter how simple that one step might be. It is as if the contemplation of multiple steps makes the first step more than a single step, and therefore impossible.”

There is no scientifically validated mind-body disorder that explains such phenomena. On the other hand, there is plenty of empirical evidence for non-communicative echolalia and for problems with comprehension, including of spoken commands—particularly in autism.  

The fact that many of the subjects can produce intelligible speech sounds, and that some of them, as Biklen notes, are able to read out loud what they type, raises questions about why they need to resort to typing at all. Why can’t people who are capable of pronouncing sentences like “I would like some grapes please”, “maybe it was the doorbell”, “I am worried”, and “It is alright, I am here, Mama”, and who can purportedly conduct sophisticated conversations via hunt and peck typing, not do the same via speech? Apparently, the answer is simply that they can’t:

“I could not express an opinion or ask a question or comment on a situation. I could not say ‘I don’t want to go’ or Can we go home now?’ or ‘I would prefer to do it this way’ or even ‘I am cold.’” 

Biklen offers no explanation, simply noting that:

“all but one were unable to speak conversationally in complex sentences at the typical speed of conversation… although several could do this if allowed to combine their speaking with typing… To this day, only one of the contributors can carry on a back-and-forth conversation without first typing his side of the dialogue.” 

Nor is there any known language disorder that combines extant pronunciation skills with complex syntax skills and conversational skills that emerge only during hunt and peck typing. On the other hand, there is plenty of empirical evidence for non-communicative echolalia (didn’t I just say that?) and for significant facilitator influence leading to sophisticated messages. The relevant difference between speech and typing, then, is that it’s a lot harder to influence the internal movements of the speech apparatus than the external movements of an index finger in front of a keyboard. (And we might note, in passing, that it’s also a lot harder to cue ten-finger typing than index finger pointing—which might possibly have something to do with the fact that none of these individuals, despite years and years of laborious hunt and peck, have graduated to touch typing).

Speaking of unknown disorders, one additional one that emerges multiple times in this account as something that, in the pro-FC world, goes by the name of “monotropism”, and that somehow (in ways that no one has made clear to us skeptics) is supposed to allay all our suspicions about FC. The idea is that some of these people are unable to see and hear at the same time. On subject “can pay attention to what he hears, he explains, but only if he shuts out the visual.” Another testimony states: “I am mono-channeled… I cannot see or cannot hear my environment.” However, the part of this statement that I’ve elided—“and can only do or concentrate on one thing at a time”— suggests some confusion. There’s a huge difference between not being able to see and hear at the same time (e.g., while watching a movie, simultaneously hear the sound track and see the cinematography), and not being able to concentrate on two things at once (e.g., watch a movie and fold laundry). It is well established that autistic individuals tend to have a narrow focus and trouble shifting their attention from one thing to another. It is not well-established, or even established, that there are human beings who can see and can hear, but who can’t simultaneously do both.

There are a few additional oddities in Biklen’s book for which there are simpler explanations than what is offered there. I’ll leave these as exercises for the interested reader:

  1. The subjects do not perform well on simple academic tasks: they are bored and/or uninterested and/or resent being given such babyish things to do. But they do quite well on complex academic tasks.
  2. Contrary to what’s typical in autism, one subject reports doing much better on the verbal IQ tests than then the performance tests. (“Although I know in my head what shapes might correlate, I find it difficult to make my hand point to the right answer.”).
  3. One subject reports that she sees the words on the page “in pieces”, whereupon her mind connects them into a whole. “I can read and make sense of something extraordinary quickly,” she explains.
  4. One subject reports that “I may not look at you when you talk, but I am always listening and I always understand.”
  5. (Extra credit) One person reports, “My cousin told me that I used verbs as if my first language was German.” Specific examples: “When I was asked stupid questions reply I always would words decide safe were to answer. I did try to trust people then friends with them I would be.” “I autistic am.”

No review of Biklen’s book is complete without a discussion of the selective ableism that emerges from these collective accounts—an ableism echoed by self-styled Neurodiversity proponents. Time and again we hear about how one of the worst things that befalls these various subjects is being called “mentally retarded” and ending up in special ed classrooms. It’s ok to be autistic, non-speaking, apraxic, etc., but it’s not OK to be intellectually disabled.

Biklen’s disservice to people with disabilities goes further. Indeed, it goes further than dismissing scientific findings that are potentially promising while promoting quack communication methods that have a long history of terrible harm and horrendous opportunity costs. Beyond all that, this self-styled disability rights advocate also ends up undermining educational accessibility. Time and again, Biklen and his Disability Studies allies tell us how important it is to “presume competence.” And surely it’s right and reasonable to begin by presuming that people, no matter how disabled, are competent in the sense of capable of learning. But that’s not what people like Biklen mean. What we’re supposed to presume is not just that people with disabilities are capable of learning, but that they’ve already learned enough stuff on their own that they’re close to operating at grade level: that somehow they’ve learned to read, write, and spell simply by soaking it in from the ambient environment; that they’ve picked up current events from the radio, and arithmetic from clocks, calendars, and Sesame Street. But very few people—if any—master such skills and knowledge through osmosis alone. Most of us depend on teachers and systematic instruction, and that instruction is accessible only if it’s tailored to our actual level of mastered skills—not to some fantasized level of competence.

But naturally it’s the skeptics whom Biklen suggests are ableist. Skeptics, Biklen suggests, think that people who can’t speak can’t think. Apparently we’ve never heard of Deaf people or Steven Hawking. We also apparently think that people with autism have no imagination, no desire to connect with others, and no ability to empathize. What the real research actually shows is that people with autism, while exhibiting attachment behaviors, attention-seeking behaviors, and basic empathy, and often having active fantasy lives, are deficient in imaginative, symbolic, social play (think doll play), and in Joint Attention, social reciprocity, and intuitive, accurate perspective taking.

That doesn’t mean that autistic people are incapable of developing these skills, at least to some degree. We should begin by presuming that they are. But what we shouldn’t presume is that they’ve already acquired them, and that all we have to do is sit next to them and “support” them while their extended fingers hover over the letters of the alphabet.

7 thoughts on “The myths of Autism and the Myth of the Person Alone

  1. In your very complex blog, you write “It is not well-established, or even established, that there are human beings who can see and can hear, but who can’t simultaneously do both.” Thanks for reminding me that I need to check the research about monotropism, which was stated in my son Ben’s first IEP in January 1977 before he turned 5.

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  2. In October 2020, nearly 4 months ago, on the timeline of Sue Rubin, I wrote the following public comment on the subject of monotropism: MONOTROPISM is the noun and MONOTROPIC is the adjective for this condition of persons with autism first published in the professional literature in 2005 in an article by Dr. Dinah Murray, Wenn Lawson and Mike Lesser. Thank you for raising this important issue in 2020 and getting the attention of Douglas Biklen who first published about Facilitated Communication in 1990. My own son Ben was described in his first IEP written in January 1977 in the month he turned 5 as being monotropic, not being able to process hearing and seeing at the same time. In addition in early 1977, Dr. William Condon of Boston University filmed my son and showed that when he heard sounds that his body responded multiple times, which may explain why my son had completely nonverbal autism and when evaluated at the Developmental Evaluation Clinic at Boston Children’s Medical Center in August 1977 at age 5-1/2 where he was the first child evaluated there by SLP Dr. Howard Shane and Ben was correctly found to be noncommunicative. By age 10 my son had become communicative developing his own independent self-initiated method of gestures including moving his head for yes and no so he could request all his daily needs. Besides not being able to process hearing and seeing at the same time, being monotropic also seems to apply to processing only one of any of the physical senses at the same time, with besides the 5 more commonly mentioned physical senses of hearing, seeing, feeling, tasting and smelling, other physical senses include the very important sense of proprioception (knowing where one’s body is in space, making very important the need for proprioceptive feedback provided by a facilitator touching his body) and for my son being extremely sensitive to the sense of pain. Ben was introduced to Facilitated Communication in February 1991 at age 19 by Marilyn Chadwick of Syracuse University and after a full year of regularly following “best practices” FC, Ben on his own initiative in late April 1994 started to use his own type of FC so he could type at least 10 times faster and get out important long statements.

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