#80 Understanding the Stuttering Brain with Dr. Per Alm

Stuttering is about speech. Not about personality.
— Dr. Per Alm

Listen to this episode on Apple Podcasts, Spotify, Google Podcasts or your favorite podcast platform. You can also watch the interview on YouTube.


Dr. Per Alm is a researcher and lecturer in neuroscience and psychology, from Sweden, affiliated with Uppsala University, Sweden. He is also a person who stutters. His research has been focused on understanding stuttering, its causes, and its mechanisms. A main strategy in this work has been to try to link information from different aspects of stuttering, from its basic causes to what happens in the throat and mouth.


EPISODE HIGHLIGHTS

00:00:00 Introduction

00:02:13 Dr. Per Alm's personal experience with stuttering.

00:04:47 Dr. Per Alm's personal health history and how it relates to his work.

00:07:20 The polarization of views on stuttering treatment and acceptance.

00:10:35 From mechanical engineering to research in neuroscience and psychology.

00:14:04 The need for understanding and acceptance in stuttering treatment and research.

00:15:18 The importance of person-centered care in stuttering treatment.

00:18:45 The role of temperament in stuttering.

00:23:30 The importance of an integrated approach to stuttering treatment, with both acceptance and speech techniques.

00:26:50 The impact of stress and anxiety on stuttering.

00:29:00 The role of genetics in stuttering.

00:32:15 Discussion on the future of stuttering research and potential breakthroughs.

00:34:43 The role of psychological aspects in understanding stuttering, despite its root biological causes.

00:35:40 Admiration for researchers in the field who also stutter.

00:36:17 Dr. Per Alm cautions over-interpreting psychological aspects as the fundamental cause of stuttering.

00:38:40 Dr. Alm offers his insights on the variability of stuttering and the multifactorial nature of its causes.

00:40:35 The frustrating nature of stuttering as a condition that doesn't "cooperate" or behave predictably.

00:46:11 The role of dopamine and the brain's signaling in stuttering.

00:54:45 The episode concludes with Dr. Alm's message for the world: "Stuttering is about speech movements and not about personality."



MORE QUOTES

"The brain automatically makes an estimation. What will be the outcome of this? If I say something, what will be the outcome and will it be catastrophic, or will people be happy?" - Dr. Per Alm

"The brain basically has two main systems... one is inward directed and one is outward directed." - Per Alm

"Stuttering is the central problem of moving the speech, articulators or larynx, in the right way." - Per Alm

TRANSCRIPTION:

Uri Schneider: What a treat it is. Uh, it's Uri Schneider here, a host of transcending stuttering and Schneider speech. And today, one of my, I wouldn't say childhood heroes, but ever since I started training and studying as undergrad and grad, a name that kept coming up Per Alm. Kind of like in a different way, Madonna, like someone with a name that you've just never heard.

It's so. Mysterious and, and then you get to meet the man more astonishing. So I'm so excited for today's episode to really interview one of my, someone I admire, a hero. And, uh, I'll give you the formal intro, but we're in for a treat and we're gonna touch on aspects of stuttering and life that we haven't touched on on other episodes.

So this is gonna be a great one with some really good science and some good theoretical thinking and hypotheses. But we're in the presence of greatness and, uh, I'm so glad that you're here.

Per Alm: Okay. Uh, thank you so much. Uh, Uri, I don't really know what to say about your kind words here, but, uh, it's really a pleasure being here.

Thank you.

Uri Schneider: I didn't expect that you would, uh, allow me to say that if I told you I was gonna say it before, but it's all true. So, uh, the formal bio, just to let everyone in on this Peram is a researcher in lecturer in neuroscience and psychology from Sweden affiliated with Sala University in Sweden. He's also a person who stutters his research has been focused on understanding stutter.

it's causes and mechanisms. A main strategy in this work has been to try to link information from dis different aspects of stuttering, from its basic causes to what happens in the throat and the mouth. So from the brain to the lips, and of course the, uh, lived experience of people who live with stuttering.

So thank you so much and this is gonna be a very wide ranging conversation. Yes, thank you. . So as I shared with you before we turned on, uh, what would be something that's not in your formal bio that you would want people to know about, about

Per Alm: you? Okay. Uh, well, uh, I was thinking a little bit about that.

Well, actually, I feel I'm, I am a bit proud of. of going from a person who really had a great fear of, of talking in front of people and to really hated that as much as anyone can hate it, I think, um, to, uh, to doing things like this in a second language. And, um, so, cause I had a really severe stuttering and, um, yeah, so.

One thing.

Uri Schneider: Beautiful. So we'll just go a little bit into that. If we were to meet per, as a young boy, who would we see?

Per Alm: Okay. Yes. Um, good question. Well, actually I had some, uh, slight starting, uh, at the age of three or so, I think, but it didn't really become, Problem until school age about eight or nine or so, and then it get more severe.

I guess we do now talk more about that, but, uh, this aspect that I have come to realize now, uh, quite recently, that I, it seems like I had what's called rheumatic fever as a child. When I was about six years old, it was a sequel from the, uh, Hong Kong flu, and I probably got a strep cocal infection. And, um, I have realized also that probably had a quite mild version of what called pandas.

Uh, that's, uh, kind of, of neuropsychiatric, uh, uh, Obsessional compulsive disorder and so on, uh, that is resulting from an autoimmune reaction a caused Baal co infection. So actually at that age, I was not very well. A and I think I come to realize the MAO is probably a combination of a genetic heritage for stuttering and, and this autoimmune reaction caused by the infection.

Yes, we'll talk more about that in relation to staffing in general, but it has been a very important part of my personal

Uri Schneider: experience. That's incredible. because those of us that know have seen the important work you've published in the past few years, which I mean published for decades, but in the past few years, specifically looking at, uh, some of those potential triggers and causes and correlates.

So it's fascinating. I didn't know that was part of your story.

Per Alm: No, actually I didn't really realize it until. Began working with it. So it's been, been developing my insights during the last years.

Uri Schneider: You weren't in Chicago or in Palo Alto in that set of data, correct? Pardon? You? You didn't grow up in Palo Alto?

No. or Chicago. So you're not part of of that data set?

Per Alm: No. Nope. I grew up in South Las Sweden. . Beautiful.

Uri Schneider: So one more question just to explore this is, as you think back to your life arc, uh, what were some formative experiences that were mm-hmm. formative, however you wanna go with that. Yes,

Per Alm: yes. I think actually, well, it comes to stuttering.

I, I had quite major problems with stuttering when I. Teenage and young adult years and I went to starting therapy and at that time in Sweden, uh, as in Scandinavia and much part of the world, uh, uh, the main focus was on acceptance, uh, of startling. So actually work with speech techniques were almost tab.

Uh, it was not, it was, seemed something really bad, uh, that would only make your problem worse. So, but I, I think that I was formed from that, that I, uh, I began. In a kind of opposition , uh, to try to explore things that were not available at that time. So, uh, nowadays, I, I, I don't like polarization. I think it's very important to, uh, get things together, but, uh, it's easy to start out in one camp against another camp.

So let's say. .

Uri Schneider: That's certainly been a theme in these conversations and episodes, how people that have enough experience start to see these camps. Um, and you're either with us or you're with them. Um, yeah. So what were you saying about that? Like growing up, what your experiences in Sweden were very much, uh, acceptance based.

Yeah. And, uh, speech strategies and things like that were taboo. And then you said you had a, a kind of like, uh, anti establi. Spirit. What meaning? How did that manifest?

Per Alm: Yes, I was, uh, I was a part of, of the introducing I fluency, I fluency, shaping techniques in, in Sweden and Scandinavia, for example.

Uri Schneider: Amazing.

So from the boy that you described to the researcher that I have the privilege to sit with today, what drew you? That's like an, it's not the intuitive. Of meeting the boy you described. So what drew you to this work and gave you the gall to, to do the work that you do?

Per Alm: Frustration . Well, uh, I will say that basically I think it was one thing that I think early struck me was that I did not understand my startling and I.

All I think I, when growing up, had a feeling that I did not really stutter because sometime I could talk fluently, but then I always failed to keep up the fluency. So I just had a feeling if I just pick myself up, I can't be fluent all the time, but I failed. Um, so, and, and that started, uh, A wish to understand starting, and that has been the driving force, I think.

And I started actually in mechanical engineering. That was my education basically. So I worked for five, six years as a mechanical designer. So in, in machine industry. Um, but during that time I got involved with the, uh, self-help group movement in Sweden and. Finance the project to, uh, to uh, uh, to develop a, a material for study groups, for study groups or persons who started to learn more about, uh, research and treatment and so on, was starting.

So, uh, and, and that resulted in the politician of a book, um, , uh, a popular science book on starting, starting treatment in Swedish and Danish. Uh, so, um, and. During that time, I got in touch with researchers at the hospital, uh, in, in neuroscience. I, I wanted to get them to do research and stuttering, but they said that they don't really have the time they need to talk to a student, and they encouraged me to go that way.

So I moved from engineering to study psychology and medicine and, and from there, going into this, .

Uri Schneider: If you see a problem, you can't always wait for someone else to address it. Nope. Um, that's incredible. That is so incredible. So, and now just like a retrospective on the career from. Being a mechanical engineer with a person who stutters and kind of having that holy grail search of looking for the understanding of stuttering that would help you crack it and help others gain understanding and insight.

Um, as you look at the decades and the thrust of where the field has come and gone, and coming back to what excites you and what frustrates you, like, what are you excited to see researchers and clinicians doing, and what are some things that you might feel like you wish they'd do less of? Yeah.

Per Alm: Good question.

Uh, I think that, well, I am quite excited about the development of, of research in this field. I think it's moving, it's moving forward quite rapidly now. Uh, so I think, uh, um, lots of things are happening. Uh, but I also. Can become a bit frustrated when I see things coming back over and over again, which I thought we in a way had left.

It's, uh, it's, it's about this pendulum from polarization from one camp to the other. And, uh, yeah, if I should wish something, it, it is the end of the camps, uh, to try to, uh, Solve, solve disagreements by, by really, really having dialogues to, um, and, um, because for example, now, uh, the risk, this question about, uh, the neurodiversity is some, is doing something that is, uh, a part of the normal.

Speech variations or is it a, a kind of problem that we should get rid of? And, uh, as I mentioned before, my background is that they come from this acceptance and I've moved into medicine. So I'm in a way, have become a representative of the medical view. Uh, but at the same time for myself, I think. . Now I don't start stutter very much, but when I talk here, but I do still stutter and I don't require myself to be fluent.

Uh, I just want to be able to talk and express myself. Uh, and if I have some stuttering that don't really bother me. So in that way, I. For acceptance, but I also know that stuttering can be a real severe communication problem. So I think it's an ethical question partly that, uh, make available the choice to people to make up their own choice.

How to handle the stuttering and maybe handle it differently at even different periods in the life in one period, fluency may be important in another period. It is not, for example.

Uri Schneider: I have chills the way that was articulated and the way you frame that. Um, certainly my hope is that this episode and this entire podcast and everything that transcending stuttering has evolved and is evolving to be, is a place for different voices and there's not one way. And yeah, that's great. The only thing that's not welcome is intolerance

If we can't, if we can't give the mic to the person on the other side and hear them out. As long as they speak with mutual respect and decency, uh, that's not welcome. But otherwise, that's what this is all about. So that was so beautifully said. I think, um, yeah, the pendulum is something my father always talked about and a lot of people may not appreciate it, but if you look at the history of the profession and self-help and the line between and then the dynamics and then self-help kind of.

we're over here, leave us alone. You know, stop trying to fix us. It's us and them again. Mm-hmm. . And then you create these, at least in the us you know, places for professionals and people who stutter to meet together, a national stuttering project, and NSA and friends and others. Um, that's really a much more robust model.

And we have to make sure we don't slide backwards into the camps. Yeah. No, I interrupted you.

Per Alm: No, I just want to say that, that, that, uh, this new diversity movement, I, I really do respect and understand where they're coming from and I can see, uh, that there's a lot of disappointment in treatment of starting and, and also, Like fluency, shapings technique, uh, it, uh, I mean, it's not a free lunch.

You have to pay the price with attention and practice and, and failures. Uh, you can't guarantee fluency. So I think we both, uh, we need to mix both views.

Uri Schneider: Yeah. And the other thing you said that was such a few words, but so profound and un. Underappreciated, and then we'll move into the guts of what our topic for today, but this is no less important.

At different stages in life, a person is ready for different things and is ripe for different things. Mm-hmm. , there are things a seven year old cannot do. A 19 year old can do it. It's not about early intervention, and then the window closes on the contrary. Mm-hmm. , there are things that are possible later.

That weren't earlier. And when you mismatch the wrong expectations and, and inputs and, uh, kind of good segue into the brain research, but, you know, when you mismatch things, dopamine isn't good or bad. It's about when and where it shows up. It, it serves a purpose in, in different ways. But, uh, yeah.

Per Alm: Yes, I can mentioned, uh, we have a colleague in Oslo, in Oslo, Norway, Edan, HIL.

She did a PhD a few years ago and she developed a form, uh, that was about asking a client or patient about what is important for them in therapy. Uh, and I think that is something that we really need to appreciate, uh, that, uh, uh, that the therapist, so to say, Should not have so much preconceived ideas about what is important for the person to have in front of them.

Uh, be open to, uh,

Uri Schneider: that. Yeah. That's really the practice of person-centered care, which is yes, yes is said broadly, but practiced scarcely, and it's hard. It's hard when, especially sometimes the professional comes in as the know-it-all, and sometimes it's the client or the person who is. Pushing the professional to be the know-all, to be the boss and, and yeah, it's a dance and it's an important dance and it's one that we work on.

Um, great transition to, one of the biggest indicators that I look at, at least in my style of working with a person, is I look at their temperament and that was impressed upon me by Ed Contour, great Ed Contour. In a, uh, presentation and live conversation that we had in Scottsdale, Arizona. Uh, so something that I know you're very interested in looking at is what role temperament can play.

Is stuttering linked to a reactive temperament? And I thought maybe you could just walk us through for people and for myself it's excellent to always sharpen what is temperament and, and what is the kind of theory here that maybe stuttering is interacting with it, and what are your findings or what can you share with.

Yeah.

Per Alm: Yes. Thank you. It would be interesting to hear more about your experience as a clinician about this. Uh, cause I don't really, yes. Uh, yes. I can mention that. I'm not a clinician, unfortunately, so, uh, don't have that experience. So, but, um,

Uri Schneider: you're, you're totally welcome to flip the table. You know, you can share your piece and I welcome being

Per Alm: interviewed.

Yes. Okay. But, uh, uh, what's temperament? Well, uh, In psychological research, temperament is defined as the biological aspect of personality. You could say what we are born with. Um, and there seems to be differences, for example, that some children are more reactive than other children. They're reacting with stronger emotions, stronger aversion, and so on.

Um, and. There has been a theory, uh, basically I think it's very old theory. It's, I think it can have roots to Wendell Johnson and further, but it has been like the last two decades that stuttering persons, uh, often would be characterized by having a more sensitive and more emotionally reactive temperament.

And the theory would be that, uh, in some. , if you experience some dysfluency as a child, you would be expected to react stronger to these dysfluencies and you would get like muscular tension in your larynx and so on. And that would start, uh, uh, vicious circle for the development of stuttering. Um, and that would put an emphasis on.

Uh, the psychological emotional aspects of starting as a part of the course of starting. So,

Uri Schneider: and then so what would you say in terms of that link and what's the contemporary view on that and, and any personal insights both from, from your research and your personal experience? Yeah, I think

Per Alm: it's an interesting question.

And actually, um, when I was a doctor student, I began, I. Actually my first research paper in English I wrote, it was about emotions of startling. So I started out with a positive view of this idea, so to say. Uh, but then when I started to look more closely at the, at available research, I became more critical in questioning.

Um, I think that when looking. The data, I think we all always should look at the data and follow the data. Uh, it, um, the strong finding that children who begin to stutter are not characterized by. Shyness social anxiety, so on. There are ac actually prospective studies, uh, on, on community level where they follow a children from age, age two up.

And actually there's slight difference in the opposite direction, uh, that the, that, uh, children who related begin to start to show a little less shyness at age two and. that was a non statistically significant, but I think it actually may be a real, uh, tendency. Uh, but if we're going up the edge, we can see that there is on group level a small difference, a small statistical difference in emotional reactivity, and it seems to be real.

Uh, but first it's important to say that this. If you're having a statistical significant difference, it doesn't mean that you can separate the groups based on that. It's, if we're looking at this difference, there's about 85% group overlap, and that's the first thing. So when it comes to emotional reactivity, Most stubborn children are absolutely the same as all other children.

Uh, so just at the group level, but you cannot really say something about the specific utter child based on this. Um, the second is that it seems when looking at the data, the I, I can, I have found no indication, no support, that this actually increases the risk for persistent. And then on the contrary, it's a bit counterintuitive, but it seems to that children who have a high emotional reactivity at age three seems to have a pretty good prognosis to recovering.

So it actually seems to be the opposite. How could that be? Um, well, When looking at the data from children and also adults, it seems it's quite clear that there is a higher frequency of traits of A D H D in person. Suta, um, not all of them, but the minority of of person who starta have a trait of d h, adhd.

Uh, and one aspect of h ADHD can be this, like being more, uh, than emotionally. Uh, being easily frustrated and so on. Um, so I think that the research on, on emotional reactivity, the, uh, that these results actually reflect the subgroup with traits of D H D and. Often children tend to show traits with adhd, especially at age of three.

Uh, a three year olds are quite hyperactive. Um, and it seems that there are starting children who may maybe for some, uh, some developmental aspect of the dopamine system to have a period of stuttering at age three. , and they also quite hyperactive at that age. But then with the, uh, when the system mature, uh, at age five or six, the starting goes away, the hyperactivity, uh, goes down and they stop starting.

So I think that basically, uh, emotion reactivity is not based on the data. It's, it is not, um, an indication for persistence of stuttering.

Uri Schneider: So there was something, there were three things that I wanted to just, uh, reflect. You said one line, it'll be the first thing I'll, I'll take issue or disagree. Mm-hmm.

or suggest an alternative. You said we should always follow the data, and I heard a beautiful quote that said, I look at one second. Data is an indicator, not a direct. Okay, we should look at the data, be informed with data and not go blind. None of us will drive a car. I think I have enough gas. I think I'm going within the speed limit.

We should have data, but it shouldn't drive us. We should be informed. What, what are your thoughts on that? Yes. Related to

Per Alm: data. That's a good point. Because the data may be wrong or, and it may be, um, so incomplete. So, uh, but we have. I think we have to deal with the data in some way. And so to not deny the data, that may be a better way to express it.

Uri Schneider: Absolutely. We can't put our head in the same,

Per Alm: so, but, um, but I would be interested to hear more about your experience, uh, from the clinical perspective and from Edward Contr. Uh, uh, if you.

Uri Schneider: Well far be it for me to speak on behalf of Ed, but I'll share, um, I'll be happy to respond to that. I did. I just don't wanna lose my, I'm gonna come to that.

Don't let me, hold me to that. The two other things you said, I wanted actually just to punctuate and elevate for people who may have, um, you speak. So, uh, it's just a fact I could listen to you all day. I'm on the edge of my seat. It's so eloquent and so grounded and no fluff. Uh, it's just a delight. So thank you.

So I just wanna punctuate this gentle message you, you talked about. I think we agree and so many people do, but I think it's not yet really realized out there. People who stutter are not a homogenous. And it's an umbrella term. The, you used the word subgroup, and I think we need to start really thinking about that, which leads to where I'm gonna go with it clinically.

But if we think of people who stutter as not all being the same, they share a certain, uh, set of symptoms, a certain set of experiences that have a powerful both, uh, commonality in terms of how they present on the outside. And also a relatively univers. In different flavors, uh, internal and emotional experience for many.

Um, but, but they're very different. One from the other. One might have a very bold physical stutter and, um, and a very strong inner sense and emotional strength and so on. And another person may appear, there is no stuttering on the surface. I didn't hear them stutter, but in the inside it's eating them up from the insides.

Oh, and so this inside, outside and the, some. Enigmatic nature of how both the variability, but how it can present so differently. I often get phone calls from parents or people for themselves saying if they call from America, they say, I don't, I don't, it's not really a stutter, it's more of a stemmer. And if they call from the uk they say, oh, no, no, it's not a stammer or a stutter and anything.

It's, I don't think, it's only the stigma of that word because they're the same word, just different use, different semantic uh, usage in different parts of the world. So in England it's called a stammer us. It's a stutter. They're the same thing. Um, , but I think people think of that movie they saw or that classmate they had, that's a stutter, that out loud, severe physical, audible visual presentation of the biggest, loudest, boldest stutter.

And so people will say, well, I don't do that. Oh, and then as we continue the conversation, , it's a difference of degree, not a difference in kind, but the composition of their experience suggests to me is subgrouping. So I just wanted to elevate Punctu. You said subgroups and I think thinking about those with h ADHD and those with this temperament or that, yeah.

What did you wanna say on that?

Per Alm: Yes, I fully agree with you about this inside, outside, uh, uh, thing. Um, that it is with peculiar, with stuttering. often it seems like people who have quite mild starting and are able to hide it have the most, uh, psychological impact.

Uri Schneider: That's right. And that feeds into what I was gonna say.

There was the third thing that you said that was brilliant. I guess at the moment it's not necessary, but to respond to your question. Temperament is relevant to me from the first phone call, and I'm gonna say this very practically, for parents or for clinicians, anyone that wants to take this, where they want to take it.

I think usually the first question I ask a person who's calling often it's a parent of a young child today, is the parent of a teenager. Um, how do they feel? Are they bothered? And I'm not only asking are they bothered and motivated and ready to do work, but I'm asking like people around them, other stakeholders are concerned and raising concern or, or, or interest, uh, how's the person's experience of it?

And it doesn't mean it's accurate, but I ask them, you know, how do they react in the moment of the moment of a stutter? In the moment of the event, what type of reactivity do you see? And then I ask, you know, and overall, what is their overall temperament? Are they generally an easygoing or are they somewhat, somewhat stiffer?

Are they extraordinarily go with the flow? They almost don't have any, uh, anchor. and these things indicate to me not predicting the trajectory of whether they will continue to stutter or not, as we usually see these conversations in the context of preschool children who are demonstrating stuttering.

And the question often asked is, is this developmental stuttering which the child will grow out of on his own, her own? Or is this something that's gonna be something that's going to persist and we should treat it? My experience based. The research that I've had access to and experience of my father, Dr.

Phil Schneider, or my own, is that the indicator of whether to give support is in is, is informed by many. Inputs, and one of which is not just what we see in the stuttering, uh, behavior, but also if the child, for example, has super high standards, gets frustrated when they're building something and it falls down and they have, um, oversized reactions and temper tantrums.

They're disproportionate with the trigger or the frustration so that. , I believe, tends to have a higher risk of being thrown off and rattled by a stutter and starting to go through a cycle of that vicious cycle you talked about more quickly and more, more fiercely, forcefully, fiercefully, stronger. And that's gonna, that's a recipe for let's get in there and give some support and some guidance so that we don't create that reactive cycle that starts to reinforce itself, which hopefully we can unwind.

but why let that happen? Uh, that child is more susceptible to some event, some feedback from the environment becoming a v a deeper, more impressionable experience, more lasting, uh, in, you know, impression. Whereas the child who's Rollie Polly, who likes spills milk on the floor, doesn't bat ash and, you know, messes up their project and goes with the flow.

I might have other questions about what might be most helpful there, but I'm, I'm more forgiving and I have a looser. Sense of, um, they might be able to tolerate more experiences and not be as impressed or shaped by them. So that's how my question leads to my thinking about how soon, how strong I put intervention into place or support into place.

And what type of support, and comes back to your comment at the beginning, more acceptance based or more, um, let's say mechanical or behavioral. . So for the child who is particularly high standards, let's say, uh, I think acceptance is of the utmost importance to try to soften those standards to the degree we can.

We can't, we can, we can't usually can't turn them around to 180 degrees, nor do we have to, but we wanna make sure that that high standards is something they can harness and use to their advantage as opposed to something that actually holds them back and gets in their own. The flip side of the child who's rolly, poon goes with the flow and is so beautifully delightfully easygoing.

Um, it might be a great opportunity to, to explore, experiment, and play around with things that are more of a mechanical nature, more direct, uh, because there isn't as much of a concern in my mind that if we say the wrong thing in the wrong way, we're gonna create some sort of harm. That's. Can't be, can't be resolved, can't be, uh, worked with.

So that's how that informs, uh, some of my,

Per Alm: yes, I think that you express it very well. Uh, uh, so I I have no problem. But what you're saying, I think I, I would applause, applaud that, uh, clinical view. Um, because, because what I said previously, it should not be interpreted as psychological aspects not being important, uh, because.

Obviously it's important for how you, how your life is, and it's quite clear that that many persons who start to develop secondary, uh, problem of different chains from the starting. Uh, so from a clinical perspective, I fully agree that, uh, that these are important aspects. Uh, I think maybe we should write an article together about this

Uri Schneider: I just got chills. Yeah, , that would be the greatest honor. The, to me, the bridge. The bridge and the beauty of who you are. And many of the great researchers right now in this space are people who stutter. So whether they do it with explicit intention or not, they are a greater bridge and they bring more humanity to their research just by virtue of their lived experience.

But at the same time, there's more work to be done to inform. Clinical practice with data and science and research and vice versa. So some of the research could be further informed by a greater connection with frontline clinicians. Yes. Yes.

Per Alm: Yeah. So in summary, I think that that, that this aspects that you're highlighting here are important in the clinic, but it's important to not to, so to over-interpret that as the fundamental course of settling

Uri Schneider: Absolut.

Um, let's, with the time that we have, we'll never get to everything because I don't know if I showed on video here, but I shared a video with all my friends. These are the articles that per sent me to prepare. There's at least 300 pages here, and that's not even everything. But, uh, let's, let's talk about one of the other enigmatic things about stuttering, which is the variability.

So, um, another thing I hear from people, um, reaching out for help, whether it's a parent, whether it's a person, , you know, in this situation I can no longer go on like this, but at the same time, like yesterday was fine. Mm-hmm. and talking to my mom yesterday, like, I just want you to know, like it doesn't happen there.

And then in this other place, I, I can't, I can't go on like this. And so that in and of itself creates another layer of this frustration. It's been said by people who are blind and stutter. That the stutter is far more disturbing to them. The blindness is something that is steady and consistent in its presentation, whereas the stutter has this there again, and then it's not.

And I think as, uh, Chris Constantino and I think Eric Jackson had this conversation, it's, it's the thing that doesn't cooperate the way you want it to. So when you don't care, it doesn't happen. And when the stakes are high and you actually wish it wouldn't show up. , that's when it shows up. Um, so what would you say about the variability and I think the multiple, I think the multifactorial thing, I'm thinking of it like an hourglass.

It's almost like there are many reasons. that a person might have started stuttering. The cause might have multiple inputs that that resulted in what we see today, both biological, environmental and the mix in between. And then there's like the, uh, bottom side of it is like the variability of how it presents, which is the function of many other interactions and dynamic models, which you talked about in that last presentation.

So what would you say to crack open this black box of variability for people to start understanding for themselves and for others?

Per Alm: Yeah. Yeah. Thank you. I, I think that when it comes to the basic view of the basic cost starting, I agree. that it is multifactorial, but I think that my view of this multifactorial differs somewhat.

Cause um, I think current research points primarily two various types of biological factors, but different.

Uri Schneider: I just, I just wanna go on the record and pull that back. I did not mean for, for my own sake, not because of what you said. No, no. I wasn't suggesting that stuttering is, is. Should not be considered unless it's an extenuating circumstance of a very unusual sort to be caused by an environmental factor or an environmental experience.

Yeah, those are far and few between. They exist, but they are the, the very, very extreme experiences and they're very few in terms of what proportion of people who stutter the cause is based on that. So you could have a trauma of the greatest capital T and you didn't stutter till the age of 40 and you went through so.

which I don't even wanna articulate, and you acquire a stutter or you could have a brain injury. Those are the kinds of things for children who stutter, uh, different biological contributors, and then how they go through the reactivity of that or the response to that. Yes.

Per Alm: Yeah. Great. With, uh, perfect. Um, so the variability.

Yes. Um, how can we view this variability?

First, I want to say that we don't fully understand this. We can have, uh, what I have is some speculations, uh, I would say, um, I think that I liked what Constantino and I Jackson said about, uh, I don't remember the exact wording, but

Uri Schneider: stuttering is the thing that doesn't cooperate or behave the way you want it to.

Yes. Something of that sort.

Per Alm: Yes, exactly. I think the stuttering is basically from my view, a problem of moving the speech, uh, articulators or larynx, so in the right way. And normally when we plan a movement for something moving our hand, we just think about moving a hand on the hand moves. It's no issue.

Stuttering to me, is. Intermittent disconnection between will and and motor, ction. Sometimes, we are thinking about saying something, but this does not happen. And of course that's frustrating and it's also surprising. It can be shocking. And if it's in a social situation, it's of course quite stressing because no one understand why.

And the person who experiences it, doesn't understand what's happening. It's just a sudden disconnection, uh, between the will and, and what direction. And that is, I think, the central stuttering why this is happening. And that's something we are exploring right now, in different ways. Um, there are indications that.

Parts of the brain called the basal ganglia in the central of the brain. And Erik Jackson's team and others have done very important study, I think about what's called the beta waves, the brain waves, uh, which should be in, uh, they should be suppressed when we do a movement, but it seems like when we get stuck, Uh, they are not sufficiently suppressed.

And then it's, yes. You mentioned before we start recording the, um, the comparison that stuttering might be like, uh, like not releasing the parking brake when, when starting to car. Uh, , like the parking brake in the brain would be the beta waves. When the beta waves are strong. Uh, all movements stop when the beta waves are suppressed, the movements can go on.

Uh, but it seems like, um, like when we are in moments of stuttering, we don't suppress the beta waves sufficiently. Uh, how can this come about? Well, I think the, I've been thinking about. The last weeks for different reasons. Um, it's getting a bit complicated, so I have to, I'm planning to write more about this, but one aspect I think is that the brain basically have, have two main systems in science terms.

They called. One is called called the, called the default network. Uh, basically you could say that we have one network that is so inward directed and one is outward directed, and the inward directed is very active when we are focusing on memories, emotions, making plans, so to say. The output director is actually when we are actually actually doing something, when we're focusing on, on movement, focusing on, on sensory information, hearing and so on.

Uh, and what's interesting is that these two systems are like a seesaw. When one is strong, the other is weak, so they suppress one another and one thing is. . If you ever have an advanced stuttering, you are beginning to expecting problems. In speech situ, she's starting to think about what will happen if I get stuck and what will be the consequences?

Will I lose my job? Will they hate me? And whatever . Uh, so basically it is default system. The invoice system starts to, uh, become very active while you, at the same time should focus on the outward system to be able to talk. So, So I think that in inspiring person, uh, it's not that the such a inward system is abnormal, I think it's perfectly normal.

Uh, but because the outward system of speech is a bit, uh, a bit unstable, so to say, uh, when the inward focus becomes very strong, uh, it suppresses the outward system. And risk of starting increases. So, uh, my views actually that, uh, maybe it's not so much the, uh, uh, than the sort emotions of anxiety and so on that treat starting in this situation.

I think it may be more the. Um, the thoughts we have, uh, the catastrophic thoughts which compete with the, uh, actually wordings and formulations that we are trying to express in speech.

Uri Schneider: So to layer that in, again, super profound. I'm fascinated. And just to unpack what you were saying, cuz I think some people get on the pop science of neuroscience and they start going down the dopamine brain.

dopamine train is what I meant. But it's the dopamine brain as well. Mm-hmm. . And it's right, it's not so simple. It, it's not just looking at dopamine. So you're talking about the beta waves and the gamma waves, you're also talking about the dopamine. Right? And so, and then there's questions of the signals and how strong the signaling is to tell the neurotransmitters how and what to do.

Um, but what I was thinking about, you had a quote in something you shared with me where you said, It was a quote from Burke that the dopamine system is sort of estimates whether it's worth expending a limited internal resource like energy, attention, or time. It's this anticipatory decision that's made kind of at a subconscious level of whether the outcome is something that we want.

Well, then we're gonna invest in it, and if it's something that we don't want, we're gonna hit the brakes and. , are you still talking about that, that that's where kind of the inside outside experience starts to get into the neuroscience understanding of what's happening?

Per Alm: Yes. I think that can be part of it also.

Cause that's the other aspect I would say. Um, and um, and here I feel we are on a bit uncertain ground, so to say. Uh, uh, I think the dopa. Hypothesis on starting are very interesting and very important. Uh, my personal view at the moment is that I think that the most persons who start, uh, the dopamine system in itself is not really, uh, any different, basically.

But I feel it, I think it can still play an important role in stuttering, um, related to the quote you just read. Um, cause. I've used the term that the dopamine system is the master of action, uh, , uh, it's the very old system and it's basically, uh, will, is, uh, researchers have been looking at, uh, at very, at very ancient, uh, types of fishes.

And they have the same dopamine system as we have. So it has been preserved during, during the millions of years. Um, And what the dopamine system basic function is that when it is released it, it says, yes, go do this. And it, when it's not released, uh, it's such a inhibiting movement that it should not be.

So when Parkinson deceived, they have a, have a shortage auto dopamine, and they have difficulties moving. Uh, so, uh, when we. Getting into a speech situation, I think the brain automatically makes an estimation. What will be the outcome of this? If I say something, what will be the outcome and will it be? Eh, catastrophic, or will people be happy?

Uh, and depending on my view of the outcome, that will influence the release of dopamine. So if I think the consequence will be catastrophic, then there will be very little dopamine released, but. Uh, cause the brain is not stupid. They don't want to do something that will hurt me . Uh, while on the other hand, if they think this will be great, uh, then more dopamine is released and then, um, the movement gets easier.

So that I think is such the other side of, of this, uh, of this variability, uh, in my current.

Uri Schneider: Fascinating. It's like, um, sometimes these episodes are similar to stuttering. If we just had a little bit extra time , we could say everything we wanna say. But we're gonna start to bring this episode to a close, but clearly we're, we're laying the seeds for much more.

Um, hopefully a masterclass with you and another episode. But I would just say about that for people that are listening, you could tell me if this is, uh, fair or if you. Tighten knit. I think the idea of the variability being so concerning, people often call and think there's something wrong that if their child stutters or they stutter, but it's not all the time.

That must mean it's psychological. That must mean there's something wrong with them because if it was stuttering, shouldn't it happen all the time? You know, someone who's blind doesn't wake up one day with vision and one day not. Uh, so the, the coming and going of it, I think is quite Madden. . And so understanding that, uh, the thing that's driving the supercomputer, that's driving speech, motor coordination, speech motor movement is an extremely dynamic system.

Yeah. And the bio neurochemical shifts of that brain have an impact in how different parts of the body function. And speech motor is one of, if not the most complex of the.

Per Alm: Very, very well expressed. Thank you. So, yes, I, yes. I would like to add one thing, uh, one piece of research I read quite recently, uh, it was a study of temperament and so children, um, I think it was by the, by the country team.

Uh, I think it was quite interesting because it seems like in these children that, that some children, uh, starting seems to be, especially, By positive emotion when they became positively excited. And that would imply the moral releaseo dopamine. Um, and that makes me think about is it subgroup for, what is it?

Um, actually I think that's, there's a lot of things we don't really know here. Uh, but I think it's a good, important message to parents that, that if the child. Start more at home than in school. It does not mean, uh, by itself, that the school, uh, that the child, uh, don't like it at home. It, it, it could be the opposite, that it just relaxes at home.

Therefore, start

Uri Schneider: more. There you go. Now you're talking clinical language. Yeah. Um, it's a, it's a huge confusion cause people think, well, if he stutters at grandpa's house, there must be something inappropriate happening. Or I've gotta start digging to figure out what's happening over there. And sometimes it's a signal.

the person is actually very comfortable and at ease. Yeah. And so they're just letting their hair down is what my dad says. Or, yes. Not putting on the tuxedo. They're just wearing a pajamas. . Um, perfect. Let's close on this. I'm gonna ask you this question and I'm gonna move my space. If you could take the billboard in the New York Times or in Stockholm equivalent, uh, what message would you like to share with the world on that billboard at no cost?

What would that message? .

Per Alm: Well, if if it's, if it's going to become real, I have to think about it again. But I was thinking that maybe one thing I would say core is that stuttering is about speech movements and not about personality.

would you say

Uri Schneider: that one more time? I got moved over there. Yes.

Per Alm: Okay. Yes. I think that one, eh, yeah. I'll restart. Uh, I think that one of of the key aspects I would like to highlight from my point of view is that uttering is about speech movements is not about personality.

Amazing.

Uri Schneider: And so we have to think of the other side of that, which is don't judge a book by its cover. We all from a neurodiversity or speech diversity point of view, we might have motor movements that are different, one from the other, but it doesn't have an indication of the person's. Value or intellect or personality or interest in being part of that conversation?

Yeah, and so it's these conversations we need to have and really just open up and learn how to have conversations that are sometimes uncomfortable because we can get to much more comfortable places on the other side. Yeah, so this was certainly uncomfortable when you send me all those, uh, articles per

I didn't feel like you were gonna test me, but I didn't know where I'd have the time or the head space. And I can just tell you it was a chain reaction of questions that it brought up for me and, uh, probably about another 50 questions that I had lined up for our conversation. So we're gonna need another five episodes at least, but we'll take it.

Step steps. Yeah. Well, thank you so much.

Per Alm: Thank you for having me, and it's been a pleasure talking to you here. Thank you.

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#79 Life on Delay with John Hendrickson