A small but vocal group of individuals

They are an amazing group.  Some are poets, novelists, or visual artists.  Some have graduated from or are currently enrolled at prestigious colleges and universities such as UC Berkeley, Tulane, Oberlin and Harvard, among many others.  Most are advocates, some professionally, others as just something they do on the side to give back to the community.  Some have written op ed pieces in the Wall Street Journal, others have given presentations to the United Nations.  Some are active in non-profit advocacy groups or lead student-run organizations on campuses.  Some have shared their perspectives with medical providers, educators and architects to help these professionals understand how to better serve nonspeaking people.

https://i-asc.org/an-open-letter-to-my-sons-skeptics/

And all of them compose these perspectives, advocacy statements, op ed pieces, UN presentations, novels, and poems via some form of facilitated communication. Their wrists, arms, or shoulders are held, or a letterboard is held up to them, or, at the very least, a “communication partner” sits or stands next to them and prompts them. One set of eyes is glued to the keyboard; the other set of eyes may or may not be, but an extended index finger that belongs to those eyes hovers over the letters. The moment the communication partners leave the room, all that sophisticated communication grinds to a halt. This, in a nutshell, is the problem.

Some see it differently:

there is a small but vocal group of individuals who are actively working to undermine these hard-working advocates.  They insist that what they communicate can’t possibly be their own thoughts, but rather assert that they are being manipulated, either consciously or unconsciously, by the individuals supporting them.  Their primary argument is that, back in the 1980s and 1990s, some individuals could not execute a “message passing test” developed by researchers.  (There are other studies, showing that other individuals could indeed perform this task as described, but those studies are ignored by this crowd.) 

https://i-asc.org/an-open-letter-to-my-sons-skeptics/

(The last two statements are easily fact-checked: see the Research page of FacilitatedCommunication.org.)

Some accuse this small but vocal group of hounding families who have already committed their children to FC: my child “won’t do a message passing test for you… and to continue to demand that he do so again and again is both psychologically damaging and discriminatory.”

The small but vocal group of people I know is truly amazing. They are artists, scientists, therapists, engineers–people who have dedicated their lives to finding ingenious ways for language-impaired people in general, and non-speaking people in particular, to communicate independently.

We–I’m honored to have joined them–are deeply concerned about what the Clever Hans Effect and the Ideomotor Illusion tell us about facilitator influence. We are deeply concerned about the human rights violations and opportunity costs involved in hijacking autistic voices and in replacing evidence-based interventions that presume the capacity to learn things with non-evidence-based interventions that assume that those things have already been learned.

And no, we have no intention of hounding people who have already chosen this path–or had it chosen for them. But we are eager to reach others who may simply be considering it; those whom the real villains (is that too strong a word?) are trying to ensnare.

I should emphasize that they–the real villains–are none of the above.

Which brings me to a third small but vocal group: the professional quacks who run the facilitated communication clinics; the people who should, and probably do, know better.

14 thoughts on “A small but vocal group of individuals

  1. As I have commented before, I am extremely busy with personal and family matters (such as spending five hours door to door taking my 49 year-old son Ben with nonverbal autism to the hospital for a six month follow-up CT and appointment with his oncologist on Monday) and i will not be able to post a detailed comment for about another month. I will note that you write “And no, we have no intention of hounding people who have already chosen this path” but have you ever attended an IEP or IPP meeting where the ABA behaviorist on the planning team will bully the nonverbal person and family against the use of FC?

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    1. No but I’ve had clinical psychs try to bully me into using Stanley Greenspan’s non-evidence-based Floor Time.

      My best wishes to you and to your son, Arthur.

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  2. And my best wishes to you and your family. Your comment is the first time i have heard about bullying in connection with Floor Time while I have heard many times about successful bullying by ABA behaviorists against FC. Now i better focus on other matters and I will try to finally comment on your several blogs about FC in another month or so.

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  3. Katherine, first off let me thank you for your commitment to not hounding those who have chosen these methods of communication. I wish more skeptics would exercise the same restraint. I can tell you that the institutions that have supported my son’s advocacy have received pressure not to do so.

    I understand that you are basing your position upon your view of accepted scientific consensus and acting in accordance with your conscience. I would just encourage you to remember that history has shown us that scientific consensus evolves in the face of new data. For example, for decades medical textbooks and professors taught that gastritis and peptic ulcers were caused by stress and spicy foods. When Marshall and Warren put forward the hypothesis that the bacterium H. Pylori was responsible for a majority of cases, they were nearly laughed out of academia. They proved their hypothesis in 1982, but it was so contrary to long-held beliefs that it wasn’t really accepted until Marshall ingested the bacterium and gave himself gastritis in 1985. Shortly afterwards, the treatment of these disorders was revolutionized, providing relief to millions. In 2005 they were awarded the Noble Prize for Medicine. They had shifted scientific consensus by bringing new data to bear.

    Similarly, I am asking you to consider the fact that dozens of people are reporting spellers and typers describing non-observable physical symptoms to medical professionals and having empirical diagnostic tests confirm various illnesses. So the real-world experience doesn’t fit the hypothesis that spellers and typers can’t communicate something unknown to their support person. And new research out of prestigious universities such as the University of Virginia and the University of Cambridge are bringing new data to bear by looking at eye-tracking and brain activity. Here is one such example: Jaswal, V. K., Wayne, A., & Golino, H. (2020). Eye-tracking reveals agency in assisted autistic communication. Scientific Reports, 10, 7882. https://www.nature.com/articles/s41598-020-64553-9

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    1. Jennifer, thank you for your response.

      The history of science is indeed full of examples where the consensus turned out to be wrong. The initial rejection of the theory of continental drift is another example.

      As you can see at FacilitatedCommunication.org, we keep abreast of all the recent studies and review them carefully. Several of us have gone through the Jaswal paper, point by point, in great detail, and have written critiques of it. I have published one here. https://catherineandkatharine.wordpress.com/2020/12/11/what-scientific-reports-wont-publish-my-critique-of-jaswals-fc-s2c-eye-tracking-study/

      I saw your link to the UCC research page, and we have been going through those studies as well–although a number of them are already familiar to us and already up on our site.

      It could be that the Ideomotor Illusion, the Clever Hans Effect, and everything we know about Joint Attention and language acquisition, about Joint Attention and incidental learning, and about how children learn to read and spell will turn out to be wrong. It could turn out that claims that autism is a disorder of mind-body connection, and/or a disorder of intentional action, and/or a disorder of attention that explains message passing failure, will turn out to be true.

      But, as far as I can make out, we’re nowhere near that point.

      In the mean time, I feel it’s better to put scientific rigor over the naked eye. A long time ago, my naked eye told me that my son (who also turned out to be autistic) couldn’t possibly be deaf. After all, he was clearly responding to creaking floorboards and fingers that snapped behind his back. He was also expertly tuning the radio past all the static to the clearest possible signals. It turned out that my eyes had tricked me: he is profoundly, profoundly deaf, and could never have heard any of those things. Only after his hearing was subjected to rigorous testing did I figure out what had really been going on when I thought he was responding to sound.

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      1. Still not ready to post a more detailed reply but I just decided to check the comments and I have a question about the end of your last comment – So what did you figure was really going on when you thought your son was responding to sound?

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      2. On the other hand, my wife and I were very concerned that our son Ben was deaf because of his lack of any response to sound, an issue that I know has been expressed by many, many parents of young children who later were determined to have normal hearing but turned out to be “profoundly, profoundly” autistic instead. As a baby, especially before he started to walk at 17 months and he never crawled before then although he would stand in place, we could make a very loud noise behind his back and unlike a normal child he would not flinch as would a normal child. I never heard of a child where the parents thought he could hear because he was amazingly picking up nonhearing cues and then turned out to be profoundly, profoundly deaf. Then when he could finally walk and very soon could run and we opened up a bag of snack in the kitchen and he was in the living room, he would come running to get some snack so we were no longer so concerned he might be deaf!

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  4. Hi Arthur,

    The cues were vibrations (from the creaking floor), a puff of air (from the snapping finger), and the tiny tuning light on the side of the radio, which would flicker on and off depending on reception. All these were things that, to us hearing people, are much less salient than the associated sounds. Take away the sounds, and suddenly the tactile and visual cues become signal rather than “noise”.

    The lesson here is that it’s really hard for naive observers to detect cues, even those that are shaping the behaviors of those near and dear to us whom we think we know intimately.

    One more thought: When we want to know what’s really going on, our best informants are neither ourselves and our naked eyes, nor the naked eyes of scientists and doctors, who are often as susceptible as we are to believing what they “see.” If we want to know what’s really going on, we either need to do a double-blind experiment, or to bring in the true observational experts: trained magicians, who know exactly what fools people, what cues people, and what to look for in these seemingly extraordinary situations.

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    1. Thanks for the detailed response. BTW, did you ever ask your son what was going on instead of you figuring it out? I did know about the cues from vibrations, which I think applies more generally and does not require “creaking” floors. I realize you do not accept any information from FC but my own son explained he has a serious issue with automatic visual cue-seeking so he rejects some of the so-called “best practices” insisted upon by promoters of FC. I hope to look at all your recent posts about FC and provide more detailed responses after this month, noting it is already March 31.

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      1. My son was less than 9 months old at the time, so we haven’t gotten his take on what was cuing him back then.
        What’s special about creaking floor boards, as opposed to other sources of vibrations, is that they can delude hearing people into thinking that the creaks are the only cue, say, that someone is walking around: it’s easy for us to forget about the associated vibrations.

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  5. Before this blog entry I never knew that your son was “profoundly, profoundly deaf” (I may have missed or forgotten the information) and my immediate thought is that his autism diagnosis based on the prominent paradigm of behaviors, may be questionable compared to my son with his obvious sensorimotor symptoms considering that your son has the physical disability of deafness which is known to sometimes results in behaviors the same as actual autism. When I have time after this month of March I will try to check into this issue. I do know that after a quarter century of inclusion as an ASD, Rett’s Syndrome was excluded from ASD in 2013 before the cause was found to be a physical disability of a gene mutation. What about the behaviors caused by Fragile X – should that be considered ASD or should such known genetic causes all by excluded?

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    1. My last comment was made at 3:19 AM Israel time so please forgive the two typos I just found reading my comment in the middle of the day! My next to last sentence should have had “because” instead of “before” and last sentence next to last word should have had “be” instead of “by.” On the issue of “cue seeking” I then found later today a statement that I wrote back in 1998 that I believe is very relevant to these recent discussions. Starting next week I will try to write detailed posts on “cue seeking” to my autismfc website that I will link to your recent blog entries. I expect it will take me weeks to properly complete my entries but I may start with posting the information I wrote back in 1998 and then update the information. I will end by stating that I reject autism or ASD solely based on symptoms of behaviors when there are other known causes whether Rett’s Syndrome or being profoundly, profoundly deaf.

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      1. One sentence from a comment that I posted to the newsgoup bit.listserve.autism on April 14, 1998 which is 23 years ago: “…decades of careful research by leading speech pathologists, such as Barry Prizant, Howard Shane and Diane Twachtman-Cullen, have shown that a defining characteristic of autism, whether or not the individual is verbal or nonverbal, is deficiency in the area of “pragmatics” which is the usual knack of persons who are not autistic of picking up on nonverbal cues, looks, body language, and so forth, which I will call “cue seeking.””

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