Communication methods for non-speakers?

Post Reply New Topic

This is a bit off-topic, but inspired by the flow of this thread. But, I've always been skeptical of the person's ability to communicate when there's a "facilitator" at their side "translating." The other day on that TV show "Good to Know" was a segment on an autistic young man who's a student at a college. At his side was his "translator." The autistic man was using an index finger to poke at a letter board. It was NOT a standard keyboard, but just a flat thing with big letters.

However, unlike most such instances of letter poking, the carer was NOT holding his hand. The footage didn't show what he was supposedly spelling out, either; it was just a several-second clip of him poking.

While his carer was talking about him, most of the time he didn't seem to be following what she was saying, and at one point, WHILE she was speaking, he began blurting noises and was looking neither towards her nor towards the camera -- the way a toddler might appear when not understanding the adult who's speaking around them and lost in their own world. A case might be made that he suddenly had to vocally stim, but I'd think that during a video of his carer talking about his goals, he'd be able to suppress it. It was significant vocal grunting and hand stimming that did NOT, in the least, appear to be a response to what she was saying! Trust me on that.

So I have to wonder who really is doing this student's coursework? And if he truly understands what's going on, why wasn't there a single moment of the segment devoted to HIM actually communicating directly to the viewers? He could've been shown printing something out with a pencil or marker on paper, or typing something out on a screen.

I'd like to know why autistic people who can't speak must rely on a person beside them with a letter board, instead of typing out their communication on a small laptop or printing/writing it out with a pen? It would take longer to poke out the letters I-M H-U-N-G-R-Y, N-E-E-D R-E-S-T-R-O-O-M B-R-E-A-K than to just write this out on a pad of paper.

I'm aware of an 11-year-old non-speaking autistic boy whose Facebook account states that all of the content is created by him, and the only help he gets from his mother is that she lays out the design of his prose and poetry.

Before anyone suggests that many nonspeakers may have issues with fine motor control and hence can't type, if this is true we'd have to believe that lack of hand/finger coordination comes with ALL of these cases. Furthermore, many people with motor control problems can STILL type. My father has Dupretran's and can still type. People with cerebral palsy type. Furthermore, nonspeakers employ fine motor skills in other areas, so why would typing be a problem?

Just my honest, sincere reflections here. I've posted about this on a few FB groups and have not gotten any responses from nonspeakers -- which kind of proves my theory that it's their facilitators who are doing the communicating, subconsciously making up what they believe the autistic person is thinking or trying to say. Especially if the facilitator is their mother. One mom claims her son writes poetry, yet when I held his hand to help him poke on his letter board (I was told to take his wrist and let him lead me), he was unable to answer a simple question!!

Note: My post refers to, literally, non-speakers, rather than those with selective mutism. I know someone with selective mutism who, when she's not mute, talks at warp speed.


Mod. note: This thread consists of posts split off from another thread, here: viewtopic.php?f=3&t=413695#p9293190

@Elgee

Sounds like the same BS as "facilitated communication" to me. Except the care taker is supposed to watch the autistic person's hand rather than hold their hand and move it for them. But you're saying that the "translators" seldom even look at the board. Maybe the caretaker just gets used to common requests by the client, and knows what they are saying before they finnish saying it...possibly. But do they even know that these autistics even know the alphabet and know how to spell well enough to even point to letters like that?

I dunno. But I am with you. Looks fishy to me.

AAC devices are different from letter boards, because you know immediately what the user wants, such as for instance, he points to the picture of his favorite snack, or points to the picture of him walking his dog, a glass of water, etc. I had correspondence with the mother of autistic sons who used AAC devices, and she said they'd carry them around and point to pictures to show her what they wanted. She also said they had the cognitive skills of a three-year-old -- so it's understandable that THEY could never learn to write on paper, let alone type.

So for anyone here not familiar with AAC, they aren't letter boards; they're picture boards, and they can be customized to the user. Some provide audible words with the hit of a button, which is what people with neuro disease often use. So if the user frequently wants to do a certain activity, that activity can be imaged as a choice to select, or converted to audible words.

But I'm glad you agree that something sounds fishy with the letter boards. How is it that someone is cognitively advanced enough to be in college (I forgot what they said the young man's major was, but it was a common big one), yet, despite having fully functioning hands and fingers, he can't write out his thoughts or type them out on a keypad? Even children including autistic can do this on a phone's keypad!

I once had a conversation with a deaf man who couldn't speak a single word; he could only grunt. We simply wrote back and forth to each other on a big sheet of cardboard.

In short, being unable to speak, in and of itself, would not preclude someone from communicating with visual words, whether they're printed, written in cursive, or typed on a small portable keyboard (and the typing need not be super secretary fast for this to be efficient).

But jabbing at letters one letter at a time? Plus, the recipient wouldn't always know where one word ends and another begins unless there's a symbol on there that means "space"?

The guy whose mom says he "writes poetry" doesn't even LOOK at the letter board while someone holds his wrist! How the heck does he know what he's spelling if his eyes are 90 to 180 degrees away from the letter board every single time?

Think about it: If YOU were using a letter board, where would your eyes be? They'd be smack on that board to prevent accidentally hitting the wrong letter! If you're looking AWAY, you can't possibly know where your finger is going! FC has been proven to be fraudulent.

While there are computer communication devices that the user can hit one button and a whole phrase or sentence pops up, we have to be leery of someone in college who relies on a letter board that's overseen by a carer!

The woman I mentioned earlier who has selective mutism, she showed me an app that, with one button, pops up phrases to communicate when she's mute, such as "I'm autistic; I can't talk right now; thanks for understanding."

In at least some cases this may be, at least in part, just a problem with the medium of a TV show. TV producers absolutely hate dead air. No way are they going to allow a camera to be just hanging around for more than a few seconds of silence, waiting for someone to finish typing something.


Perhaps he was physically very uncomfortable in some way?


Alas, this is very unlikely to happen on a live TV show, as I explained above.

If you can remember this guy's name, perhaps you could see if he has a YouTube channel, which might have some videos of him typing, pointing, or whatever, without the time pressures of a live TV show? That might be a better way to judge whether he is typing independently.


Some of them do type or write, with varying degrees of independence.


Why ALL? Different non-speakers have different neurological impairments.


Some can type, some can't.

In any case, becoming able to type is certainly a desirable goal. According to what I've read about the methods involving pointing to stencils and letterboards, it is usually recommended that the person ALSO receive physical therapy and occupational therapy, with the aim of improving fine motor coordination so that the person can eventually learn to type as well as point.


Unfortunately this is probably true in at least some cases. But this needs to be judged on a case-by-case basis.


Did his mom give you an explanation of why he couldn't? Shyness with strangers, maybe?

Last edited by Mona Pereth on 18 Jun 2023, 8:23 pm, edited 2 times in total.

Mona,

This gentleman is the complete opposite of shyness with strangers. He didn't know me for 15 seconds when he took both my hands and began studying them, then looking at me and seeming happy. He then led me by both hands across the room, and continued holding my hands as he swayed back and forth, seemingly happy. He certainly wasn't shy around me! I've seen him take hands of other people and study them.

The description about him on a flyer, which the purpose was to find a new caregiver (he has a team of caregivers) described him as extremely social and people-oriented.

The reason I was told that his finger wouldn't spell, as I held his wrist, was that he was "over-stimulated." It was his facilitator who told me this. The poetry claim is on his website and was also in the flyer.

I don't see how over-stimulation would prevent him from poking out the letters to spell his favorite animal, which was the question I asked him. Moments before, he had been "spelling" answers to questions from other people via the facilitator (it was a group social game that involved all of us asking random others a question as determined by the moderator).

This man has no problem retrieving chips from a bag, yet can't print out simple responses to questions even though he can "write poetry"? FC is very controversial and it wasn't long before it lost steam and was proven in experiments to be fraudulent.

This particular man needs help dressing himself and other basic self-care despite being able to write poetry and despite NOT having a mobility or neurological disorder that impairs movement! Autism is a communication disorder and does not prevent someone from being able to dress themselves. What prevents self-care is intellectual impairment, which this man surely has. But many parents are in denial and subconsciously ascribe abilities to their intellectually impaired, autistic kids that they simply do not have.

I know I sometimes shut down when over-stimulated.

Perhaps he doesn't have a single specific favorite animal, and perhaps, due to over-stimulation, didn't have the presence of mind to answer "I don't have one"?

(I know that when I am over-stimulated, one of the specific last straws that can then make me shut down is being asked a question that is based on assumptions that aren't true, such as the assumption that I have a favorite animal. And, since this is true even for me, a person who can talk, all the more so can I see it being true for someone whose verbal ability is limited to pointing or poking at letters.)


But the original FC involved the "facilitator" guiding the person's hand or wrist. It is easy to see how, in that case, the "facilitator" could be determining what the person "says."

Subsequently, various other techniques have been dismissed by skeptics as "just another form of FC," when they are not at all the same thing. Perhaps, in some of these other techniques too, the "communication partner" is somehow subconsciously determining the outcome; but, as far as I am aware, no one has actually bothered to prove this. There needs to be some serious scientific study of these other methods, IMO.

At least some people (such as Ido Kedar) have eventually learned to type independently as a result of at least some of these other methods.


While autism is not defined as including any "neurological disorder that impairs movement," most of us do have co-occurring motor difficulties of one kind or another. At the very least, many of us are physically clumsy. See, for example, this Spectrum News article.


Perhaps this particular man is intellectually disabled. But, more generally, intellectual impairment is not the only thing that can impede self-care.


I think it is best for parents to do whatever they can to awaken whatever abilities their child might have. To that end, it is far better to over-estimate than to under-estimate.

I neither walked nor talked until I was almost 4 years old. I'm sure glad my parents didn't give up on me, although I was thought to be "r e t a r d e d." Once I was finally able to talk, my parents made a point of tutoring me, teaching me the alphabet and teaching me to count, do simple arithmetic, and read clocks and calendars. Eventually, by the end of first grade, I was able to excel in school.

Hi Mona,

The man at the group social had, earlier in that event, been pointing to letters (while facilitator "held" his wrist) that spelled out sentences more complex than "I don't have one." So, I doubt he was over-stimulated. When the facil told me, "I think he's over-stimulated," the man would've nodded to agree, but he seemed non-comprehending. Remember, this man supposedly writes poetry, so it wouldn't make sense that he couldn't at least nod his head and look my way upon hearing the facil say, "He's over-stimulated." Not that he should've given eye contact with me, but at least one would think he would've turned towards me indirectly (he actually DID give eye contact earlier when he held my hands anyways).

The best explanation by far is that the facil and others have been reeled in to believing the guy can actually spell, and the facils don't realize THEY'RE doing the spelling. It's amazing how suggestible the human mind can be (so many experiments prove this, such as the "Stanford prison experiment" plus also ones where people will eat more if offered the same amount of food on a bigger plate, plus many other experiments that show how easily the mind can be manipulated.

As for clumsiness, it's true that something like 80 percent of autistics lack coordination, but that relates mostly to playing and sports, or stepping over things, perhaps walking on uneven terrain, rather than slipping into a pair of sweat pants and a tee shirt. By the same token, some professional athletes have come out as autistic, such as NBA player Tony Snell, plus two-time world champion strongman Tom Stoltman. I met a woman in person, autistic and has a karate black belt and owns a karate school. I also know an autistic woman who began karate at age five and at 12 got her black belt.

I'm not ready to assume this man can't dress himself or brush his teeth because of dyspraxia or clumsiness. He's attended three of these events (two hours long) and I'd bet the farm he has the cognitive level of a toddler in addition, of course, to severe autism.

That's the big problem right there. Of course, if someone is holding his wrist, then, yes, obviously, it's highly likely that the alleged poet is not the one deciding which letters to point to.

But there are plenty of nonspeaking people who communicate via pointing to letters on letter boards or stencils without someone holding their wrist or physically touching them in any way. Yet even that often gets dismissed by skeptics as a form of FC, when their communication partner is doing nothing more than holding the letter board/stencil and/or otherwise helping the person keep their attention focused on it.


I know one very smart autistic man who still can't tie his shoes properly.

Among the many autistic people who have motor issues of one kind or another, we don't all have the same kinds of motor issues. Some of us do have fine motor coordination issues, while others have trouble with things like "playing and sports, or stepping over things, perhaps walking on uneven terrain".


As the saying goes, if you've met one autistic person, you've met one autistic person.


That's certainly possible. Autistic people with profound intellectual disability certainly do exist. But there also do exist people who have difficulty dressing themselves or brushing their teeth due to motor dyspraxia.

I read the biography of Hellen Keller - her teacher usually acted as her eyes and ears. She was blind and deaf. She was unable to speak when she was young and her teacher started by finger spelling words into her palm - words associated with what Hellen was experiencing with her other senses. At first nothing happened - eventually she made a mental leap and associated feeling water run over her one hand with the feeling of the word “water” finger spelled into her other hand. From this epiphany she was then able to learn other words. She eventually learned braille, how to touch type, and american sign language. Her teacher did NOT only translate words on a page or spoken but also described what she saw - like the view out a train window. Hellen’s assistive technology was Teacher translating all visual and verbal stimuli. Hellen eventually got a college degree. She also learned to speak out loud with her own voice (very hard to do when you are deaf). But before that Hellen was nonverbal.

Language and thinking and communicating is a complicated thing.

My language issues are with the written word mostly. My spelling is atrocious. My hand writing is bad. I have a tendency to reverse letters and also mixup the order of letters. I have problems remembering how to spell words that are not spelled phonetically (most words In English). My mother was an English teacher and she once said I was the only person she knew who who could spell the same word three different ways on the same page. This was a bigger problem when I was younger - before everything had built in spelling and grammar checking, which included my grade school, high school and college. I have trouble producing a one page paper, and anything longer is a nightmare.

Language is complicated.

Just being nonverbal is not the same as being unable to communicate or think.

I've seen three movie version of Helen Keller: Patti Duke, Melissa Gilbert, and Hallie Eisenberg. Also read her autobiography. It's inconceivable how someone who was blind and deaf since 18 months could grasp the concept of touch typing. The one thing that Helen had ruminated upon not being able to conceive was COLOR.

Mona mentioned that in letter boards, sometimes the assistant holds the board or works to keep the user focused on the board. But this understandably raises suspicion because if someone CAN communicate by spelling, why can't they hold the board and why would they need a helper to keep their attention on the board? Spellers ALL can't be lacking this much in hand coordination and have ADHD so severe that it distracts them from spelling on a board.

As I mentioned in a previous post, people with hand coordination issues can still learn to type. So a fair question is why letter board users don't type? It'd take much shorter and would open up a greater ability for them to effectively communicate. Even though I type 80 wpm, it'd take me forever to poke out an entire paragraph on a letter board. You'd also have to make sure the recipient you're communicating to gets where one word ends and another begins.

I can see using letter boards if the user is unable to string together thoughts in their mind, and can think only in terms of single words or simple phrases like "Back itch."

I get that. But when the letter board user attends college, this comes across as so incongruous with the inability to think in actual sentences. To take and understand a college class you must be able to understand what the professor is explaining. This requires the ability to think in full sentences! So it's not believable that someone who can think in full sentences can't learn to type.

It's entirely possible for NON-handheld assistants to be creating false communication from their charges (which can be either subconscious, wishful thinking or actually deliberate, for which there'd be some kind of personal gain for the assistant).

Some of them do eventually learn to spell without someone else holding the board, and then move on to typing independently on a keyboard. That's the ultimate goal, of course. Some spellers do eventually reach that goal, while others don't. Ido Kedar, whose blog and video I linked to earlier in this thread, is an example of one who did reach that goal.

As for ADHD, lots of autistic people also have co-occurring ADHD. That being the case, I see no reason to be surprised that at least some of the more severely disabled autistic people would also "have ADHD so severe that it distracts them from spelling on a board."


Because they have very bad fine motor coordination but not quite-so-bad gross motor coordination.

As I said earlier, some of them (such as Ido Kedar) eventually do manage to improve their fine motor coordination with the aid of physical therapy and occupational therapy, and thus eventually become able to type. In the meantime, they've greatly benefited by having already learned to communicate in words before they finally manage to become able to type.


... for someone who DOESN'T have severe issues with fine motor coordination.


Perhaps so, but it ought to be possible to test for this, as was done with FC back in the 1990's. Unfortunately, as far as I can tell, the speech-language pathology establishment has urged that these newer methods NOT be tested, but instead has urged that they just be dismissed as a form of FC.

It seems like “all or nothing” thinking to me.

Are you suspicious? Ok, you can be suspicious. But you are not engaging in perspective taking.

You, for example, are using a computer or smartphone you didn’t design or build to send messages over coper or aluminum wires or fiberoptic cables over miles of network none of which you didn’t install or design to post messages on a server you have never even seen. Do you even know HTML or Javascipt or PHP? You are probably wearing clothing you didn’t make made of fibers you probably couldn’t recreate if you had to. You probably have eaten food you neither grew or prepared in the last 7 days. You wouldn’t be able to type of you didn’t eat or drink for three days. Is ANYONE posting on this forum really doing so independently? I could go on and on.

Also you overestimate the ability of assistive technology to really replace a highly motivated or well trained human facilitator.

I have tried to use speech to text to write a paper for school - it is an incredibly frustrating and slow experience. Editing with it is maddening. Most of my language subsystems are intact, but the few that are not are severely limiting.

Human languages is so complicated it is almost impossible to study. Research papers focus on it only on small parts. It took decades of work by many really smart people to get one natural language system like ChatGPT to work. If you have a son or daughter who is trapped behind a nonverbal wall you are going to try anything to get past that wall. You will be looking for any little sign. “Must work independently”may not be really on the list.

The digestive system is made of many different parts. But it is one system. The nervous system also has many parts. The brain has many different parts. Google FMRI and speech and you will see what I mean. If you add writing or typing you are adding more nerves with muscles too. Any glitches in any ONE of those parts will mess up the whole communication system - but what happens more than one part of the system is damaged or over-sensitive or under-sensitive. What if you have language center of the brain problems AND muscle control issues AND executive functioning issues AND impulse control issues AND (etc. etc.).

I have spent the last 50 years reading everything I could find on language processing in the brain. It is VERY COMPLEX. We know a lot and there is still a lot we DO NOT know. I am also a computer professional and I try to keep up with artificial intelligence and assistive technology. It is VERY HARD. True natural language processing may be an AI Hard problem, meaning that the computer has to be really as smart and capable as a human in every way in order to truly solve. So “assistive technology should work as well as a human facilitator” just isn’t real at this time.

Could FC with a letter board be real? Yes. Could it be a scam, or a well meaning facilitator fooling himself or herself? Yes.

My suggestion is keep an open mind, and remind yourself: you really don’t KNOW one way or the other. But it isn’t as simple as you seem to think.

● time.com - Naoki Higashida is the Japanese author of "The Reason I Jump" and now "Fall Down 7 Times Get Up 8". Here, he describes what it’s like to be a person with nonverbal autism.

● bu.edu - Functional Neuroimaging of Speech

Bumping this thread now that Cornflake has moved all the relevant posts here from the thread Looking for non or minimally verbal conference speakers,