Facilitated Communication and Non-Speaking Autism: What Research Fails to capture

Facilitated communication is considered harmful, a violation of human rights, and there is strong evidence that it doesn't work. But can we be so sure? What doesn't this research take into account?

In 2016, a documentary film titled My Secret Forest was released in Finland, in which Lauri, who was diagnosed with autism as a child and doesn’t speak, shares his feelings and thoughts with the help of his personal interpreter Pirjo, Pirjo’s touch, and an alphabet board. In other words, Lauri communicates through facilitated communication.

The validity of this type of communication has been widely questioned—based on research evidence—already before the release of the documentary. According to this evidence, the produced text is produced through the conscious or unconscious guidance of the assistant and isn’t the assisted person’s own thinking. Therefore, many organizations, including autism associations, have rejected both the method and the texts and documents produced through it as violating the rights of disabled individuals.

However, there are many things that the criticism directed at this method and the studies examining its validity don’t take into account and fail to capture: the diversity of communication and the sensitivity of situations, the role and significance of trust, interaction, and presuming competence, as well as the wonder and potential of the human mind. What if it would be better to approach facilitated communication as practice, as a pathway toward independent communication? In this text, I examine the topic largely through my own experiences and observations.

I hope that the discussion would be started again (in Finland as well, even if only at a grassroots level. This is happening elsewhere in the world). I think it has, or at least it will became increasingly difficult to deny that through facilitated communication (or similar methods), people really communicate and can learn to communicate independently. I don’t deny that the method is also used incorrectly, or that in some situations the produced message is indeed generated by the assistant/facilitator. But even that doesn’t actually tell us anything about the abilities of the assisted person.

Criticism of Facilitated Communication

The idea for this text originated from writings by British psychologist Naomi Fischer, “The risks of facilitated communication” and “Just believe: The strange story of Facilitated Communication.” I like many of Fischer’s other texts related to helping children and young people with autism diagnoses or similar traits, but these writings made me pause.

She wrote about the topic after encountering a podcast called The Telepathy Tapes. I wont take a position on the podcast—I haven’t even listened to it—but instead I will explain my view on why we should re-examine facilitated communication (hereafter FC) and the criticism directed at it.

Criticism of FC also targets the idea that a non-speaking person with an autism diagnosis could have a deeply thinking mind, and it seeks in many ways to justify the claim that facilitated communication deprives non-speaking individuals of their rights, because according to research the produced text comes from the assistant. But how certain can we really be about this?

I am aware of studies that aim to demonstrate—or in many people’s view have conclusively demonstrated—that FC doesn’t work and that the communicated message is produced by the assistant. Based on these studies, it certainly appears strongly so,if we don’t understand the shortcomings of the research design and the challenges it imposes on these individuals. If we don’t understand the problem that already arises from studying, in a doubtful manner, whether a person is thinking for themselves or not. If we don’t consider at all that it is highly problematic to require a person, for whom communication is extremely difficult, to prove that they themselves are communicating and thinking. And there are many other problems as well, but I will return to them.

The validity of FC has been tested in simple blinded studies: a non-speaking person was shown one picture and their facilitator another picture. Then they were asked what was in the picture shown to the non-speaking person. When the facilitator didn’t know the answer, the non-speaking person in these studies was not able to give the correct answer. When the facilitator and the non-speaking person were shown the same picture, the answer produced through FC was correct. The conclusion seemed inevitable: the facilitator had to know the answer for the correct answer to be produced, and therefore the communication generated through FC came from the facilitator, not the non-speaking person.

I don’t particularly doubt this result, but the experimental setup assumes that human beings and communication are quite simple. However, in situations like these, they are not.

Why I Am Taking a Position: My Own Traits, My Relationship to speakig, Similarities with My Own Experiences and Psychiatry

Before I go deeper into the topic, I will try to explain why I am taking a position on this, even though these issues don’t, at least on the surface, seem to concern my life.

I don’t have extensive work experience, and neither I nor my children have an autism diagnosis or significant communication difficulties. Of course, this does not mean that I could not receive an autism and/or ADHD diagnosis if I sought one. I simply do not consider them particularly well-justified diagnoses, I do no need them to explain anything, and they wouln’t even serve as explanations for me. And in general, I don’t think I could tolerate the assessment processes involved.

Primarily, I take a position because when I read texts written by non-speaking individuals with autism diagnoses and descriptions of their experiences, some of them feel familiar. They describe, in part, similar internal experiences and feelings that I had when my condition could also be described as psychotic and manic, and afterwards, during my recovery and while searching for a way out of services that didn’t meet my needs.

If I had been admitted to care and evaluated during my first psychosis-like episode, I might have ended up on a path that would have led to a schizophrenia diagnosis, and my treatment path would have been significantly heavier.

And indeed, these experiences and feelings are such that they are not very well understood—in treatment, in therapies, or otherwise. Even “high-functioning” autistic individuals or most autism/mental health activists who are heard in the media don’t capture them. This is also one reason why I believe that, for example, books written through facilitated communication are truly the person’s own text. There are other reasons as well, and I will go through them later.

The situation of people diagnosed with schizophrenia and those who have recovered from it is also somewhat similar to that of non-speaking individuals with autism diagnoses who have begun to communicate after a period of non-speaking. They have been considered—and are still treated—largely as hopeless, uncomprehending, bored, and empty. And when they find their way into this shared world, their experiences aren’t heard. Nor are the problems caused by the lack of genuine encounter understood.

I could also say something about those moments when I almost decided that speaking was no longer worth it. There were at least three reasons for that.

One reason was that I had so many thoughts that speech couldn’t keep up.
Another reason was that the thought was so multidimensional that it couldn’t really be put into words (at least not in that agitated state), or I didn’t know how to describe it in words. And the third reason was that my speech was not well received, or it was not wanted to be understood, or couldn’t be understood—everything was interpreted as illness.

Of course, physical challenges are also one factor for being unable to speak, but I have also wondered what causes them: do all such physical difficulties of speech come first, or can a physical difficulty in some situations develop as a consequence of psychological difficulties in communication.

Could the Facilitator Produce the Text Merely Through Their Presence?

FC often requires physical contact between the non-speaking person and the facilitator, and in that sense the text can indeed be produced by directly guiding the assisted person’s hand. However, other kinds of methods have since been developed in which the facilitator’s presence is still necessary, but touch is not, and these are also considered harmful.

I find it difficult to understand how it is thought that the facilitator could produce the text merely through their presence. This has been justified, for example, by suggesting that the assisted person’s hand follows the movements of the facilitator’s hand (which may move at the edges of the visual field without contact). Fischer, for example, writes:
“Even when FC users appear to learn to write independently (i.e. without touch), they still require the presence of their facilitator and continue to type with one finger…”

And this would require more explanation: in what way can the text, in all such situations where the facilitator is merely present, be produced by the facilitator? Let alone in situations where the person begins to communicate without the facilitator.

Another argument used to justify the ineffectiveness of FC is that some non-speaking individuals appear, when writing, as if they are not really looking at the keyboard or alphabet board. In some situations, this is certainly a valid point. But many people can also type quite well without looking at the keyboard. Secondly, I have seen non-speaking individuals with autism diagnoses independently assemble fairly complex puzzles without appearing to look at them very much. So it could be more about atypical visual functioning and the breadth of the visual field.

For example, Stephen Wiltshire’s vision and memory function in a remarkable way: he draws large cityscapes from memory after seeing them only once.

I am not denying that misuse of FC absolutely does occur, or that in some situations the message can be entirely produced by the facilitator. But there are also intermediate forms and other things to consider. To begin with, one might reflect on how much we ourselves, when communicating, read cues from others—for example, their expectations, what they are thinking, and how they receive what we say—and modify our message accordingly. Some people may not do this, but others do it way too much.

I understand that it raises questions why touch, or the presence of a particular facilitator, is needed. I cannot directly justify the necessity of touch, but I can understand its potential need and benefit, and even more so the idea that a specific, familiar, safe, and trustworthy person can significantly influence how easy it is to communicate—and perhaps even whether one is able to organize one’s thinking at all.

Intact Mind

Fischer writes that FC appears to reveal an “intact mind”: philosophical reflections and higher-level academic skills in people who haven’t had formal education. And She doesn’t believe in this. She refers, for example, to a text written by a 10-year-old non-speaking Sabrina Guerra that contains quite philosophical reflection, and states that she would be very surprised if her own children, already significantly older than 10, would write something like that.

This isn’t a very strong argument: children are not made from the same mold, just as adults aren’t, and age tells us very little about what we are capable of. In fact, very few adults would write like this either:
https://neuroclastic.com/arresting-ableism-insight-and-experiences-of-a-nonspeaking-autistic/.

And I also wonder how it is thought that the facilitator could be capable of producing all that text—poetry, literature, descriptions of inner experiences, university exam answers—that have been produced through facilitation, if they themselves don’t otherwise produce such material.

I watched a TED talk by Temple Grandin (“The world needs all kinds of minds”), and I quote her words: “Think about all the different kinds of minds.” That is, think about all the remarkable outputs of the human mind and the diverse people who live independent lives in their own ways, doing extremely creative things—people whose minds are ”proven” to function in very unusual ways. We should consider it possible in the case of some people—and perhaps especially in the case of the children and individuals I am referring to—even if definitive proof doesn’t yet exist.

Sabrina’s text and its philosophical tone bring to mind the words of Finnish professor of psychology Kirsi Peltonen, whose words I noted in a recent seminar:
“When faced with challenges, a child has to develop skills that others of the same age don’t, and therefore they also have entirely unique strengths.”

And it is indeed a significant challenge to be as if locked inside one’s own body, when others don’t see you and don’t even try to reach you. In my view, many individuals with autism diagnoses may already have unique strengths to begin with, and these may actually be part of the factors that lead to the challenges defined as autism.

You can explore Sabrina’s Facebook pages here. I browsed some of the posts, and referring to my earlier thoughts about atypical visual functioning, I highlight something she wrote last July:

“How I read is a powerful testament to all I do in an effort to use exceptional skills to work around things I struggle doing. Ocularly scanning left to right is not something I can manage. I hope to develop the ocular control to do this one day. What I can do is capture an image that I can inspect later in my mind. I’m able to grab large amounts of text at once. I can easily read a phone message over one’s shoulder in an instant.”

She describes having learned to read already at around the age of two, having formed bold self-advocacy statements and beautiful prose sentences even before she was able to communicate and write on a computer. That is, at the same time when people didn’t believe she could even recognize her own name in printed text, because she couldn’t control her hand to point to it.

This is, of course, highly unusual—but unusual things happen, and why is it considered impossible, when we know that there are, and have been, other people like this?

From Non-Speaking to Speaking, From Assisted to Independent

Critics of FC question, for example, the texts of Sabrina Guerra and do not believe them to be her own. They also question the authorship of the Japanese Naoki Higashida regarding his books (I have referred to his book earlier as well). And they question many other things. But this view is extremely narrow.

What should we think about those who have been non-speaking and then begin to speak? Language skills don’t excist only when one starts speaking. What should we think about those who once spoke fluently but no longer do? They don’t necessarily lose their language abilities. And what should we think about those who have begun communicating through FC and eventually are able to communicate independently using an alphabet board or tablet, even without the presence of a facilitator? To whom can the burden of proof be assigned?

Many have, however, been able to demonstrate that they can communicate independently. Temple Grandin described in a video how, when she met the non-speaking Indian Tito Mukhopadhyay, she required him to describe what was happening in a picture that Grandin herself selected randomly. Mukhopadhyay wrote the answer himself, very quickly, in front of Grandin. Grandin stated that there was no doubt that he was writing independently. (See also Jordyn Zimmerman.)

However, Grandin speaks against FC; she says that one must prove the ability to communicate independently, otherwise the text is the facilitator’s. On this point, I somewhat disagree: it isn’t automatically the facilitator’s text, although sometimes it may be, or in some situations the facilitator may influence the message, even partially.

The burden of proof may be too heavy, and the supported person may still be learning. The boundary regarding authorship of the text isn’t something that can be drawn with a ruler, and a person cannot be considered to have learned to communicate only once they can do so independently. Sometimes the text may also emerge together, inspired by connection.

Presuming Competence

“Presuming competence” is another “risky” idea that Fischer questions:

When we presume competence that is not present, we may miss the vulnerable person before us. We may not offer them the protection they need. When we presume competence, we may not help people learn the skills that they need, because we assume that they already possess them. To be inclusive we should presume the capacity to learn and meet the person where they are. Assuming that they are already competent does not do this. ”

This understanding of presuming competence is incorrect, even though “competence” does refer to existing abilities; in this context, however, the meaning is different, or the abilities should be understood in different level.

Presuming competence doesn’t mean assuming that a person already has all the abilities they need. It means assuming that the person is capable of thinking and capable of learning and understanding—and allowing for the possibility that they may already understand, even if it isn’t outwardly apparent.

It therefore refers more to cognitive capacity and potential, not to outward appearance or how fluently a person is able to express themselves. It means recognizing that a person may understand more than they are able to express, and treating them as a full, thinking human being.

They are encountered in this way even in moments when understanding and thinking may be difficult. When someone is met, even in difficult moments, as a capable, thinking person, it creates the possibility of forming a connection with the environment; thinking begins to organize itself, and understanding grows or returns, even if only later sometimes.

Existing skills are a separate matter, but even their development should not be considered impossible. We should therefore give the other person the opportunity to learn, participate, and influence, and not make assumptions based on outward limitations.

Only by making such assumptions can we provide the necessary and appropriate support. Otherwise, there is a significant risk that our initial assumptions will negatively influence the other person’s performance and lead us to underestimate them.

In many assessment situations, the evaluator attempts not to influence the person’s performance in order to obtain an objective result. However, I would argue that this is precisely the problem with assessment. Positively influencing another person’s performance is entirely a positive thing—this is how learning happens in general—and an “objective” result that defines a fixed baseline of ability is neither particularly useful nor necessarily meaningful or even truthful.

It is far more harmful to speak to a person in a way that underestimates them than to speak to them about things they may not immediately understand. And it isn’t always a matter of lack of understanding, even if it appears so.

Sometimes it may also be the case that the other person understands much more than the speaker, but does not necessarily realize it, and is therefore confused. Or they may not understand what is being said in the same way as the speaker, in which case what is said sounds illogical and causes confusion—and for this reason the speaker concludes that the other person doesn’t understand, when the opposite may be true.

At times—perhaps often—presuming competence could also mean assuming that the other person may understand more than yourself, or at least keeping in mind that they may be able to understand different perspectives on the same matter more deeply.

The Wonders of Another Mind

Encountering a person as they are cannot, in my view, mean drawing conclusions about their understanding based on their outward behavior and remaining at that level. It means curiosity and an always open mind toward the wonders of another person’s mind—and after that, providing support in the areas they need, which may not at all be the areas where we assume people with autism diagnoses need support.

And such support does not necessarily have to come from a professional.

In these discussions, it is also often forgotten what we already understand, to some extent, about human development. We grow and develop in connection with other people. And we would learn very little if we were not offered stimuli that exceed our current level of understanding and ability.

It is much harder to learn if no one expects us to learn. Not impossible, of course—and within certain limits, it may even be especially possible to learn things that no one expects—but still significantly more difficult.

I am reminded of psychiatrist Jyrki Korkeila’s reference to the idea of the “idiot savant” at the beginning of an interview. He stated that exceptional talent in people with severe developmental brain disorders is not at all rare according to current understanding, and mentioned a theory that if one ability develops to an extreme level, it comes at the cost of other abilities.

I would suggest that this cost may instead often be influenced by the fact that expectations have been lowered, and the person’s way of learning and responding has not been understood, and that talent emerges by chance. I suspect that the phenomenon Korkeila refers to is more about misunderstanding and the resulting impression of incapacity, which in turn leads to an inability—or lack of attempt—to teach the person in the way they need.

The Concept of Autism and the Brain–Body Disconnect (Motor Apraxia)

Supporters of FC conceptualize autism as a disconnect between the brain and the body—a “brain-body disconnect”—in which case autism could be viewed as a form of motor apraxia, and non-speaking individuals would be unable to control their bodies.

Fischer writes that the message of proponents is:

“Their bodies do not cooperate with what their brains want to do. This, they say, is why they need support to type and why they do not speak fluently. It’s also why they might get up and walk off, or why they might say ‘No’ or ‘Stop’ when being ‘supported’ to communicate via FC.”

According to critics, one of the dangers of FC lies here: why would the text communicated through FC be considered the person’s real message, while, for example, getting up, walking away, or repeating “no more, no more” would be interpreted as apraxia—i.e., involuntary behavior—and not as their own message, as these proponents suggest?

Fischer writes that this way of thinking removes the person’s agency.

I would think that neither side is entirely right.

The described walking off or “no more” messages may indicate that at that moment it is too much (or perhaps not—one might also consider how should we interprete, for example, the rasistic tics of John Davidson, who has been diagnosed with Tourette syndrome).

Communication in general—even among typically speaking individuals—is an extremely complex matter. Some people may be able to easily express their deepest feelings and say exactly what they think and mean—but very few do this with just anyone.

People for whom speaking is easy, and has always been easy, may not understand how sensitive an issue it can be.

I have spoken since I was quite young, I suppose. But I have never been particularly talkative. Over the past ten years, I have spoken significantly more. But even so, there are people with whom it is much easier to speak, others with whom I listen much more, and others still with whom speaking feels difficult.

And until today, I have not been able to speak in the same way as I write. And sometimes even the writing disappears. I have not been able to properly speak about the themes I have written about the most. I rarely manage to say what I want and what I mean.

In addition, I have some kind of additional difficulty with speaking English. It is not only because I don’t know how. It is due to a great deal of uncertainty about pronunciation and recalling words, repeated negative speaking experiences… and my own lack of practice. Perhaps one day I will succeed. I suspect these experiences aren’t unique to me and has something in common with wider communication difficulties.

Autism as an Explanation Does Not Work

Fischer wonders, in relation to motor apraxia, whether we should now rethink autism entirely through the lens of apraxia, whether it applies only to non-speaking individuals or also to other autistic people, and whether autism is really about social and communication difficulties at all:

“This would involve completely rethinking how autism is understood – and there is no evidence that speaking autistic people suffer from a brain-body disconnect or have no control over their movements.”

And indeed, we should re-evaluate the concept of autism. We should question entirely whether people can be grouped together in this way at all. The challenges of speaking and non-speaking individuals with autism diagnoses are different, and more broadly, each individual’s challenges (and traits and strengths) are unique.

Autism as an explanation does not work; rather, it buries these individual challenges—and individual strengths as well—under a single label.

In this case, differences should not be explained by assuming that non-speaking individuals often also have intellectual disabilities, and therefore their thinking cannot be very deep, and that their communication needs can be met through the use of pre-given pictures. (Try bringing a picture folder to a meeting with friends or even to therapy and using only that as a means of communication.)

It is, in general, a rather strange idea that a person who does not speak (and may have somewhat unusual mannerisms) would not also think in a way that requires at least the same freedom of expression in word choice as speaking people have.

Pictures are useful and necessary in some situations, but when a person can write, or can learn to write, they need the opportunity to do so.

Problems with Research

I still want to write about why the research results on FC should not be blindly trusted. As I wrote earlier, communication is a very sensitive matter.

Almost no one speaks their most personal thoughts to just anyone. Many people know that it is easier to speak to some people than to others. There are surely also people who are fully capable of speaking but lack a person to whom it would feel safe to truly open up. And there are probably many who do not even know what genuine openness could mean. For them, conversations about nail care, children’s clothing, or sports are enough. (That doesn’t mean that this could not change in the future.

This is also related to trust—its formation and development. People speak to those they trust, and sometimes building that trust takes time, especially in situations where trust has been broken. In such cases, a person may not trust almost anyone—and I would argue that non-speaking individuals with autism diagnoses have had their trust broken, and may not even be able to trust themselves, or at least not their own bodily responses.

In some situations, their trust in the idea that they are thinking beings at all may begin to crack if they are not treated as such. For example, Sabrina writes: “Suffering for years from gravely low expectations my soul barely survived.”

When considered from this perspective, it is not surprising that facilitated communication works only with certain people as facilitators. Nor is it surprising that it does not work when others are evaluating whether you even have a thinking mind, when you are expected to prove your existence under such scrutiny.

One’s own and others’ uncertainty and lack of trust strongly affect performance, especially when self-confidence and trust in one’s existing abilities are already almost nonexistent. The opposite effect may occur when one is treated as a human being, feels seen, and can trust another person.

For example, this study discusses the challenges of researching FC quite well. Fischer also refers to it critically:
“Academic articles have argued that the scientific research into FC is ableist and outdated and should be redone in collaboration with FC users—who of course would have to make their views known using FC.”

I watched a video from a little over a year ago in which a professor of psychology at the University of Virginia spoke about their work and research with non-speaking individuals with autism diagnoses—specifically about collaboration with them. They also mentioned that with current technology it is already possible to verify whether a message is produced by the individual themselves. They also noted that people who critisize these methods may not have had genuine time to spend with non-speaking individuals.

Practicing Communication – The Environment Shapes Expression

When we consider that some non-speaking individuals have first communicated through FC and later have been able to demonstrate that they can communicate independently without assistance, I would suggest that we should, at least in part, view this kind of communication—which requires physical assistance—as practice of communication.

A necessary phase toward independent communication.

This would mean that we consider it entirely possible that the message produced in this way is the person’s own, while also acknowledging, in a nuanced way, that the assistant may have influenced the message to some extent, more or less.

Because even in communication between speaking individuals, others can strongly influence what is said and how it is communicated. Some children—and certainly adults as well—scan their environment and try to say what is expected of them. Some people later in life become aware of this pattern and begin to unlearn it.

I would give the same possibility to people who are unable to speak.

And I would also argue that communication through FC may be a particularly sensitive situation in which we cannot entirely rule out certain “remarkable” phenomena that occur between two people, which may foster creativity—or sometimes even confuse thinking. In such situations, the mental and bodily states of both people influence each other, just as they can in any ordinary interaction between people who are able to speak.

Belief System

Fischer states:
“Facilitated communication is an example of a belief system around which people have organized their thinking. The scientific evidence against it is compelling—but so is the desire to believe.”

And I must say that this could also be seen the other way around.

There is a very strong belief system surrounding the idea that a non-speaking autistic person cannot communicate in this way themselves. And the desire to believe this is strong.

And of course, the need to believe it is also strong, because the idea that we may have taken away this form of communication from people, who would really need it—and abandoned our belief in them—is a terrible one.

The idea that a person has not been given the opportunity to communicate in a way that genuinely suits them, and has been treated as incapable of thinking, is terrible—and even more so when one realizes that one has often acted this way oneself.

But this is what the situation looks like to me, and I do not have sufficient grounds to believe that this is not, unfortunately, the case in many situations.

This belief system has deprived many people of the opportunity for communication at their own level, education, and other forms of social life.

Believe in the Human Being

What should we think about those who have been non-speaking and then begin to speak? What about those who once spoke fluently but no longer do? And what about those who have learned to communicate independently? To whom can the burden of proof be assigned?

I also think about what has been said to parents about facilitated communication or the use of alphabet boards in general. I think about how parents are considered gullible when they believe that their child is communicating, and how they are encouraged to give up this hope and facilitated communication. This is justified as protecting the rights of the disabled person.

If only we could be so certain.

Even if the produced message were the facilitator’s, it doesn’t actually function as proof that the assisted person couldn’t produce similar text.

It is said that parents and facilitators genuinely believe in this method of communication. It is said that facilitators do not consciously influence the message—but that they do so unconsciously. This has, in some cases, had tragic consequences. For example, in 2015, philosophy professor Anna Stubblefield was sentenced to 12 years in prison for sexually assaulting a non-speaking man with whom she communicated through FC.

However, there are many parents who continue to use this method of communication despite everything, and it cannot be taken away from them—or from their child. And that is a good thing.

I hope that facilitated communication, and the arguments I have presented here, would be given space and time. That we would believe in people.

These are not entirely different issues from those related to humanity in general. Anyone needs to be believed in, and pure belief in a person—that they exist, that they think, and that despite their challenges they will be capable of taking control of their own life—is not harmful.

I read Viktor E. Frankl’s book Man’s Search for Meaning, and I find connections there to this theme. I will mention just one example. In a concentration camp, “The prisoner who had lost faith in the future—his future—was doomed. With his loss of belief in the future, he also lost his spiritual hold.” As Frankl writes, to restore a person’s inner strength, it was first necessary “to show him some future goal.” In the words of Friedrich Nietzsche: “He who has a why to live for can bear almost any how.”

(In the extremely harsh conditions of a concentration camp, being “doomed” often meant something final, but in less extreme conditions it may not be final.)

And perhaps this could be complemented by the words of Temple Grandin from the video mentioned earlier: show children interesting things—use their interests as motivation, expand on them, teach them, find them a mentor. “Lighting the spark … getting that kid turned on.”

The comparison to a concentration camp may be quite harsh, but the experience of not being encountered as a thinking human being, of not being able to communicate one’s thoughts in any way, and of having to listen to others talk about oneself as if one were not present, is a form of profound suffering.

But this is not something for loved ones to remain grieving over or to search for someone to blame. Finding connection, being seen as oneself, and enabling communication is what matters most. One could almost say that in some situations, it may be worth all that suffering.

Closing

I warmly welcome comments, perspectives, and thoughts.