Autistic man discovers way to communicate, publishes book

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https://www.delcotimes.com/news/delaware-county-man-with-autism-discovers-way-to-communicate-publishes-book/article_bfbe1dc6-18a7-11eb-bf95-27fcd0ca7b3f.html

This is facilitated communication (according to the videos on https://www.aalive.org/videos).

Various studies have shown that a lot of the time it is the facilitator doing the talking, not the facilitated.

For a quick overview about the danger of this, read https://www.mcgill.ca/oss/article/pseudoscience/who-doing-pointing-when-communication-facilitated.

But if you want to dig into this, read https://www.tandfonline.com/doi/full/10.3109/07434618.2014.971490.

From that study:

Actually, the letterboard pointing in some of the videos on the above page does NOT look to me like "facilitated communication" as portrayed in the video on the page below:


In the latter video, the facilitator is holding the arm of a man who appears to be mindlessly poking at a letterboard, sometimes not even looking at it.

On the other hand, the "Inside Voice" videos look to me more like genuine tutoring sessions in which students are being taught to spell words using a letterboard. The students move their own hands to point to the letters, which they look at, and they appear to be genuinely engaged in the task -- at least most of the time (although they occasionally stop and scream).

@Mona Pereth

I think you have an overly narrow definition of facilitated communication.

From the study I posted (https://www.tandfonline.com/doi/full/10.3109/07434618.2014.971490), in the abstract:

From American Speech-Language-Hearing Association (https://www.asha.org/News/2018/ASHA-Discourages-Use-of-Facilitated-Communication-Rapid-Prompting-Method/), emphasis mine:

Okay, if we agree to accept the broader definition of "facilitated communication," which encompasses a wide variety of different things, I have a big question:

Have all these various different kinds of "facilitated communication" been tested, individually, and found to be authored by the facilitator? Or did the AAC and speech-language pathology establishments cease even trying to verify any and all techniques fitting that broad definition, after the first few such techniques turned out to be fake?

The paper you referred to does not state which specific types of "facilitated communication" were used in each of the studies that it reviewed. Personally, I think it makes a big difference what kind of "support" is given in "supported typing." How could this not make a huge difference?

The question of authorship is indeed crucially important. But different methods are obviously very different and should be tested individually, rather than lumping them all into one basket.

Spelling To Communicate (in the aalive website) is similar enough to Rapid Prompting Method and a systematic review of RPM found no evidence for or against its efficacy. (Review)

This quote is from a comparison between FC and RPM, and perhaps you'll see why I lump them together. (https://www.tandfonline.com/doi/full/10.3109/17518423.2012.749952)

Another quote:


All these questions of authorship can be easily resolved by not having a facilitator/prompter. Use a big touchscreen, or use Windows 10 with Eye Control (https://www.microsoft.com/en-us/garage/wall-of-fame/eye-control-windows-10/), those are much better than someone holding a letterboard.

If this is a hoax the facilitator is pulling off it is an elaborate one over an extended period of time. To what end, prove facilitated communication works?, prove non verbal autistic people are intelligent? Is the facilitator receiving proceeds from the the book? Even pulling off that hoax that is a stretch as the facilitator would have to fake all the blogs, convince the parents to put the blogs into book form and give the facilitator part of the proceeds.

Adding to the questions Mona asked were the studies proving facilitated communication does not work done on “high functioning” autistics? I ask because facilitated communication had its hayday and was then disproven in the 90s and has been viewed professionally as quackery ever since. Back in the 90s the diagnostic criteria for autism was much stricter meaning it was much more likely the autistic person was intellectually disabled and required the facilitator to fake it to make it look good.

That depends on how, and how far, the letter board is moved, and for what purpose.

As I said, what we see in the "Inside Voice" videos appears to be tutoring sessions, in which the students are being taught to spell words on the letter board, which isn't being moved anywhere near far enough to be spelling words artificially as you suggest. It appears to me that the tutor is just holding the letterboard, and occasionally moving it slightly, for the purpose of keeping the students' attention focused on it. In any case, the important question is whether at least some of the "Inside Voice" students eventually learn to use a computer keyboard independently, without someone holding or moving the keyboard anymore.


Yes indeed, and an important question is whether at least some of the students can eventually do this, even if they can't do it during the first few years (or however long it takes, which would probably vary greatly from one student to another).

In the case of the "rapid prompting method," judging by videos I've seen of RPM students including Ido Kedar, at least some students do eventually learn to type independently, or with a facilitator/tutor there for emotional support only (NOT physically touching the keyboard or the student, and NOT giving any vocal guidance beyond words of very general encouragement like "keep going!"). Here is a video in which Ido Kedar uses various keyboards with a text-to-speech converter. As you can see in the video, no one is touching him and no one is touching his keyboard either.

@ASPartOfMe

@Mona Pereth

There is something called the Clever Hans effect (https://en.wikipedia.org/wiki/Clever_Hans), in which a horse managed to solve math questions by observing subtle cues, or prompts, from its trainer. This is why studies are always done double-blind in science, so that the experimenter doesn't influence the subjects by giving away information. This is sometimes lumped together with what is called the ideomotor effect (ouija board phenomenon), which FC and RPM are susceptible to.

And while the videos from aalive don't seem to show the ouija board phenomenon, it definitely shows the Clever Hans effect.

Now, I'm not disputing the fact that some people go on to type independently, like Ido. At this point, Ido is not using RPM anymore. He is using AAC. There are no studies studying the efficacy of RPM, but I can safely assume that some go on to AAC while some don't. With that, I think you are heading into murky ethical territory here. Is it okay to abuse some autistic people so that others can speak for themselves?

Again, all of these ethical issues can be easily resolved by removing the facilitator from the equation and teaching non-verbal autistics how to type via a touch screen keyboard or using eye tracking technology instead (i.e augmentative and alternative communication)

I suppose one could argue that old-fashioned teaching methodologies, featuring rote memorization and drills, involve a "Clever Hans" effect too. In order for a "Clever Hans" effect to be even possible in the first place, the student would need to memorize a lot of responses to various prompts -- i.e., a significant amount of learning must take place, even if the student doesn't yet understand the knowledge well enough to use it independently.

Drill-based teaching methodologies are unfashionable here in the U.S.A., where problem-solving approaches are preferred instead. In drill-based learning, students are not necessarily expected to understand what they are learning until later, whereas in problem-solving approaches, the emphasis is on giving the student a deep understanding from the get-go. The big advantage of a problem-solving approach is that it gives the student a deeper understanding, but it also has some drawbacks relative to drill-based learning. The main drawback of a problem-solving approach is that the student learns fewer underlying facts; one result is the historical ignorance of vast numbers of Americans. If I'm not mistaken, old-fashioned drill-based, memorization-based teaching is still common in at least some other countries.

My personal opinion is that the modern problem-solving approach may be best for some people, whereas old-fashioned drill-based memorization-based teaching may be best for other people. Some people can't learn to solve problems until after they've memorized a solid foundation of relevant facts. And I would expect at least some autistic children to fall into that category, given the difficulties many autistic kids have with abstract thinking -- whereas, on the other hand, a lot of these same kids have excellent memories.

Anyhow, what I saw in the "Inside Voice" videos looked to me like drill-based tutoring in the use of a letter board to spell words. I see nothing necessarily wrong with this, as long as the drill responses are not claimed to be, in themselves, reliable communication by the student, but only a means by which the student can eventually learn to communicate independently.


It seems to me that RPM would constitute "abuse" only if the drill responses are assumed to be meaningful original communication by the student, rather than just a part of the process of tutoring. But, in the context of RPM, does anyone actually confuse drill responses with a student's own original ideas? Or is this confusion just a straw-man caricature of RPM by its opponents?

My understanding is that RPM takes the position that a child's lack of ability to communicate independently is no reason to stop teaching the child whatever academic content the child is capable of absorbing, on whatever level.

The only real problem I see here is that RPM and similar methodologies have not yet been scientifically validated as a teaching methodology. But they haven't been invalidated either. Scientific studies are needed.


But what if the student is incapable of learning AAC except via RPM or something similar?

If I'm not mistaken, one of the biggest challenges in teaching severely disabled autistic children is simply getting and keeping the student's attention. RPM appears to solve that problem, as does "Inside Voice," in addition to addressing the more-widely-advertised problem of the student's physical coordination (by starting off with large letter boards and then gradually transitioning to computer keyboards).

RPM, as far as I can tell, seems to be an aggressive, intensive form of drill-based academic instruction. As such, it is the diametric opposite of currently-fashionable (here in the U.S.A. at least) teaching methodologies. But, it seems to me, RPM and similar methodlogies might be the only methodologies that can enable some students to make any significant academic progress at all.

Unfortunately RPM and similar methodologies have not yet been studied scientifically. But they should be studied. Do you not agree?

This is wrong. Clever Hans, the horse, was able to answer calendar questions like "If the eighth day of the month comes on a Tuesday, what is the date of the following Friday?" by tapping its hoof the appropriate number of times. And it did this by looking at its trainers posture. It would keep tapping its hoof until it saw its trainer tense up, and then stop tapping. There is no need for a significant amount of learning to take place.

There is something similar going on with the aalive videos.



In the Sarah video, about 30 seconds in, the prompter continues saying "and..." and when he stops, Sarah also stops. Along with all the gesturing that the prompter is doing, it is enough to cast doubt about who is actually authoring these messages.



Again this is wrong. In the videos, it is plainly stated that the autistics are answering questions, even from the first session. In the Sarah video, it starts with a subtitle stating: "First Session = 8/17/17. Answering only known questions." These videos are not a drill.

And this in no way resolves the morality of abusing some autistics so that others might be able to communicate independently.



Of course they should be studied. But if you read the RPM and FC comparison:



There are no scientific studies on the efficacy or RPM because HALO, the company that trademarked RPM, has made it insanely difficult to do any studies of the kind. This should raise all sorts of red flags about the validity and ethics of RPM.

Again, there is no need for a facilitator or prompter. AAC has already been verified and proven to be effective. (https://www.ncbi.nlm.nih.gov/books/NBK72988/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5036660/)

I don't see any "messages" being authored in the first place. To me this just looks like a series of drills. The prompter is obviously in charge throughout the session; I don't see anything that looks like even a pretense to the contrary.


How is "answering only known questions" NOT a drill? Indeed, how is "answering only known questions" not the very essence of a drill?

Looking again at this video, what I see is a girl being taught to spell words using the letter board, and simultaneously being taught other academic content as well, alongside the spelling lesson.


Perhaps I am misunderstanding those videos, but I didn't see anything in them that looked "abusive."


Yep that's a big problem. Hopefully some of the the other methodologies similar to RPM, e.g. "Spelling to Communicate," can be studied?


But not everyone can learn to use AAC via mainstream teaching methods. For those who can't, it would be desirable to have alternative teaching methods, and it seems to me that a "facilitator or prompter" would indeed be helpful to some (as a temporary means of teaching only).

In the second session, the prompter asks Sarah to point out "one of the two adjectives I use to describe the Soviet Union?"

Sarah first points at O, then points at L, Q, R, but is ultimately guided by the prompter towards P. Then she points at G but the prompter says "Hit it again".

In the 10/5/17 session, labeled as "open ended communication", you still can see various prompts being used. At one point, Sarah starts to point toward R but the prompter removes the letterboard. But these are the letters that Sarah pointed at before the prompter removed the letterboard: onoejnotstys

At the end of the video, the prompter is still using a lot of the same prompts (tone of voice and gesturing). At this point Sarah allegedly answers, "What is your Majuli Island?"

The answer was: "I'll have to say starting the letter board marks the open of my forest. I've been planting seeds since I really started with Elizabeth not too long ago. Now my forest has grown to incredible heights. That is my Majuli Island."

From your responses, you seem to think that it is Sarah actually answering the question. You seem to think that these are drills for Sarah to learn how to use the letterboard. But what if these are drills for Sarah to learn the prompts from the prompter? Did Sarah learn to use the letterboard or learn how to read the prompter to point to the "correct" letters?

The freedom of expression is one of the human rights in the UN declaration of human rights. It is a constitutional right in America and a lot of countries around the world. If the prompter is speaking for Sarah, then he is violating her human right to freedom of expression.

Given the video, I think that the prompter is indeed speaking for Sarah.

Sometimes yes, sometimes no.

What I see is an attempt to combine basic letter-pointing lessons and basic spelling lessons with what would ordinarily be considered to be much more advanced academic content. The apparent assumption here is that her receptive language skills vastly exceed her near-zero expressive language skills, and that she would be bored with typical first-grade academic content. (One of Ido Kedar's criticisms of standard AAC teaching methodology is that it was ineffective with him due to being utterly boring, and he thinks that's probably true for a lot of other severely disabled autistic kids too.)

Sometimes Sarah points to letters on her own, and sometimes she is guided via gestures. In either case, though, she clearly is mentally engaged in what she is doing, and the primary skill she is acquiring at this point is just the basic motor skill of being able to point to a specific letter. The apparent aim here is that, concurrently with simply learning to point to a specific letter, she will also learn how to spell and also learn at least some of the more advanced academic content that is being thrown at her.


Both. Following the prompter's prompts is a basic meta-skill she needs in order to be taught the basic skills of pointing to specific letters and spelling specific words. It is hoped, of course, that this guided spelling will evolve into the ability to spell words on her own, without the prompts.


This is an issue only if someone mistakes guided spelling for actual spontaneous typed communication. To me it's obvious that this video is not portraying actual, spontaneous typed communication, nor is it intended to portray actual, spontaneous typed communication, which the student is clearly not yet able to do but hopefully is acquiring the foundation to learn to do.


No, that did not seem to me to be a spontaneous message from Sarah. To me it appeared to be a guided exercise in the motor skill of pointing to a sequence of letters long enough to be a full paragraph.

I thought it was a bit tacky to have her type out what is essentially an ad for the program. But perhaps the message was intended to give her hope of continuing to expand her expressive language skills, the lack of which is probably a great source of frustration for her.

In any case, the most important question is whether she is in fact learning skills that will, later, enable her to type her own sentences, without the prompts and without someone holding the letter board.

Last edited by Mona Pereth on 01 Nov 2020, 11:55 pm, edited 1 time in total.

Looks like it was written by his mom to be honest.

The video is titled "Sarah's Perseverance to be Heard." How can she be heard if she is not speaking?

The video's description is: "Sarah's first session began on August 7, 2018. Within two months, she was expressing her thoughts and opinions. Since then, Sarah has made incredible progress in her spelling skills from writing her own superhero origin story, to encouraging others who are going through a challenge, to sharing her passion for science."

Within two months, she was expressing her thoughts and opinions.

There is absolutely no doubt that the video is showing her progress towards her alleged communication. That last part about Majuli Island, is meant to be taken as her thoughts and opinions.