Dr. Jennifer Brout - Advancing misophonia research and family understanding.
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 26. My name's Adeel Ahmad, and I have Misophonia. This week, I'm excited to bring back on the show Dr. Jennifer Brout. Jennifer is a prolific writer and advocate for Misophonia. As a reminder, she's a licensed counselor, psychologist, co-founder of the Duke University Center for Emotional Regulation, and the co-founder of the International Misophonia Research Network. In this episode, we talk about coping skills, family accommodations. the areas of research you'd like to see happen. We talk about neuroscience, epigenetics, even the possible role of evolution on misophonia and sensory disorders more broadly, and many other fascinating topics. I'm very excited to finally bring this call with Jennifer Brout to you. After the show, let me know what you think. You can reach me by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, please head over, leave a quick review or rating wherever you listen to the show, whether it's Apple Podcasts or Spotify. It helps move us up in the search algorithms when people are looking for misophonia. A few of my usual announcements. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophoniapodcast. And of course, the book by Dr. Jane Gregory and I called Sounds Like Misophonia, which is a self-help guide to Misophonia, is available everywhere from Bloomsbury Publishers. Let me know what you think. You can find it online or at your favorite bookstore. This episode is also sponsored by Bazel, B-A-S-E-L, the personal journaling app that I developed for iOS and Android. Bazel provides AI-powered insights into your journal entries and guides you with new writing prompts daily based on those insights. You can explore different therapy approaches, modalities. It's available for iOS and Android. Go to hellobazel.com or check the show notes. All right. Now, here's my conversation with Dr. Jennifer Brout. Jennifer, welcome again to the podcast. Great to have you back.
Dr [2:18]: Thank you, Adeel. It's great to be back.
Adeel [2:21]: Yeah. So, you know, of course, people know you, but there might be some first-time listeners. Do you kind of want to just remind people where you are, what you do?
Dr [2:29]: Sure. So I am Jennifer Brout. I have a doctorate in child and clinical psychology and school psychology. And I have a daughter with misophonia who's now a grown-up. And I have misophonia, and I have been working in this field for over 30 years, or close to 30 years. And when my daughter started to go through these problems with misophonia, which for her started at a very young age, two and a half, maybe three, I was very disappointed in what was happening. offered as therapy or even the lack of kindness that I got from other people in my field, which is why I started looking. I had a small family, very small family foundation at the time, and I started to look to really change the field. And I started a program at Duke, which was the sensory processing and emotion regulation program, where we were focused on what we were then calling auditory over responsivity. and a couple of lines of research with Dr. Jill Dudu that I funded. And I really have done my best to bring researchers together and get the research going. And it has gotten going. And I'm really excited about that. In addition to that, I do a lot of counseling for people with misophonia, particularly for parents and children. And I have coping skills classes.
Adeel [4:08]: Right. I'll sum it up in my own way. I mean, you're a pioneer in the field. You helped start funding, very prolific writer. So I've read articles or read books and have taken some of your classes. So, yeah, very multidimensional person in the field of misophonia. um so yeah thanks for thanks for everything you've done and uh thank you what do you say i guess now i know i know this is still a hot topic for you so a passion for you to think about what what do you think about um how it's approached like family family accommodations from misophonia for example i think that's a great question the deal and
Dr [4:47]: I know that's also been a hot topic. And I've done so, I can't tell you the amount of thinking I've really done about this, both on a personal level and professional level. What I've come to realize, well, first of all, one of the things I'm really disappointed in, and not to be negative, is the lack of research that we're getting in terms of family and children. I'm very grateful that the research has taken off in Misophonia, but I think by missing the developmental perspective, we're missing a lot. And I understand researchers have to start with adults because it is less expensive, it is easier, and there really are less sort of ethics that you have to worry about. However, having said that, we are still really suffering, I believe, from the lack of research, both developmentally, and in terms of family functioning. And what I have found in terms of accommodations, it's a slippery slope. And what I was thinking earlier today, I was thinking, why would a psychologist or a psychiatrist or any therapist question whether you should accommodate or not accommodate? And I thought, what's behind that? And I thought, one would have to believe that children are by nature manipulative and that they're going to take these accommodations so that they can overpower the household or gain control of their classroom at school. And that's just not true. That's certainly not true of most children. And when we talk about accommodations within a family, what I feel is If you don't accommodate your child, you're sending a message, you don't matter. I don't believe you. The consequences of that that I've seen are earth shattering. On the other hand, you do have to gently guide your child to understand that they need to help themselves as much as they can when they are in a situation where they're triggered and give them those skills. So it's really a balance and it's a very difficult balance for families to achieve.
Adeel [7:16]: Yeah, I agree. I feel like there needs to be a nuanced approach and I feel like whenever this topic comes up, it seems to be looked at in a black and white way.
Dr [7:24]: Yes. And it's not, it's completely nuanced and it has to, and everything, you know, when you're working with a family, everything that you do as a therapist, and I think this is also true of research, has to take into consideration the culture of the family. What beliefs does this family hold about disability, about misophonia? What can you change to make family functioning better? What does the child understand about misophonia? And that's another thing. I feel as though psychoeducation is really important because we don't know what misophonia is, but we do know what it does to somebody. So helping a child and helping family members to understand what that neurophysiological response is, is very empowering, I think, and very important. And another thing that kind of gets missed.
Adeel [8:20]: Yeah. So I'd love to hear about kind of direct research directions that you think would be that you think are missing. But maybe first, like, what what do you tell families?
Dr [8:32]: Again, it depends on the families. The first thing I start with is let's all get on the same page about what misophonia is. And I don't do that as an expert. I don't like the term misophonia expert. I wouldn't say that about myself and I wouldn't say that about anyone. Which is controversial, but there are no experts. We have just started studying this. There are no experts yet. And I feel the way to help a family, the first thing is psychoeducation. Let's get on the same page. This is what we know. This is what we don't know. This is what we're speculating about. and one of the questions and this is something that mary petrie and i i know you know mary talked about a lot and i've learned a lot from her in terms of her understanding of how knowledge is produced and one of the problems with families is that we're working in the unknown and again i have to credit mary for this not me we're working in the unknown and That's something that is really hard to accept for a family. So addressing that, what do you do when you're working in the unknown? And how do you cope with the idea that we don't have answers, we don't have treatments? So that's kind of the first thing, along with the psychoeducation. And then I work with coping skills based on the family's needs. I am a person who says, forget dinner. And a lot of people just personal experience. And time and time again, that's kind of a cultural thing in the United States that I'm always working against. So I do post a lot about that as well on social media. Like there are other things you can do, things that involve movement, things that are not specific to what usually is the first and worst trigger. Not that there are not many other trigger sounds and visuals, but I find just anecdotally that we're talking about the common place.
Adeel [10:43]: Yeah. Yeah. No, that's a good point. I've heard that from a couple of other people where they've said, yeah, you know, our family just doesn't view dinner as the bonding moment. We'd either take a walk or play games or something like that.
Dr [10:58]: Yeah.
Adeel [10:59]: You kind of like get your food done on your own.
Dr [11:03]: yeah i mean you know by the time kids are in high school really even middle school dinner is over anyway i mean this one's at soccer this one you know it's not for me personally what i find is like
Adeel [11:15]: Being able to, even when I'm having dinner, being able to like not have to sit down, knowing that I can move around is soothing enough where I can then kind of weave in and out. And then I can regulate myself better if I have options, you know.
Dr [11:31]: That's exactly it. The worst thing is to feel, first of all, movement helps misophonia.
Adeel [11:37]: Right.
Dr [11:38]: It is not a cure. And, you know, you can't always be moving, but there's no question that when your attention, It goes to your body. And I don't mean the kind of attention that you really control, but almost your unconscious attention, the pre-attention that alerts to sounds, alerts to visuals. When that is pulled away naturally by movement, because when you're moving, you have to attend to your body or what would happen. We would fall. So just by shifting that pre-attention a little bit, it can help. A little. And I always say with misophonia, a little help goes a long way.
Adeel [12:17]: Yeah. No, I agree. It's different for everybody and whatever helps. Even if it's like for me, I try to, if I can remind myself to just kind of like talk to myself and remind myself that I'm not going to get attacked by some tiger in the jungle or something from being oppressed. Everything else.
Dr [12:39]: I mean, that's the... just crazy thing about misophonia the really the amygdala which is where fight flight is mediated and really freeze fight flight we don't talk a lot about freeze but that's also a thing but you know that kind of feeling of being immobilized which is an interesting thing we could talk about today a little bit as well but just to address the idea that the amygdala mediates fight flight And it happens within a millisecond. And that adrenaline is in your body. There's no way to talk yourself down, I think, without a little bit of movement. If you can, that is so great. But for a lot of people, you need to really engage the whole body.
Adeel [13:36]: Right, right. And that's part of a theme that I've heard about, just mind-body connection and also just kind of like getting closer to your, or just being more aware of your senses, all five of them, not just hearing. Absolutely. In our current society, it's not, everything's kind of artificial processed and prepackaged.
Dr [13:56]: Yeah.
Adeel [13:57]: I've thought about, are we just kind of not able to process our senses as naturally as we used to?
Dr [14:03]: We can't. And it's so... interesting because just going back historically and this is a little political but the dsm the diagnostic and statistical manual of mental disorders i was on the team that tried to get sensory processing disorders into the dsm and it got in and then was rejected at the last minute by the editors we will never know why and one of the things that became apparent and this was so let me that didn't become apparent but let me take you back 25 years and this is the context that many parents of children who are now adults with misophonia were living in when you mentioned sensory quote unquote it was a dirty word psychiatry rejected it psychology rejected it and the only people who believed in sensory quote unquote were occupational therapists but This is very ironic at the time and still now. You ask any neuroscientist, right? You ask, for example, Dr. Joe Ledoux, who led all of the work in how emotions are processed in the brain. The first communication to your body and to your brain is through your senses from the outside world. So how can you say there's no sensory? It doesn't, pardon the pun, make any sense. And the atmosphere 25 years ago was so, and why I said unkind at the beginning was you were crazy if you believed in sensory. I mean, so SPD did not get into the DSM. Had it gotten into the DSM, I think we would have better room for misophonia. we'd have a better understanding of what you were talking about so do you know why it was just because it's not specifically in the brain kind of thing is is that why it's in the it definitely is in the brain i mean you know these the stimuli goes to your brain gets processed in parts of the brain and then the brain sends out messages to the body and you know again this is a process that happens so quickly you never be aware of it why didn't it get in i I'm hesitant to say this, but I will. I think at the time, the zeitgeist was just pro-medication, and I'm not against medication, pro-psychiatry, anti-anything else. And treatments, you know, we were in kind of really the expansion of neuroscience. And I think there was a lot of confusion. I also think we were still and to some degree still are in a real behaviorist mentality. So the idea was, and again, 25 years ago was a lot worse than it is now. The idea at the point was, if you can't see the behavior, if you don't know what's underlying it, you just treat the behavior. That is a killer. in misophonia and was in sensory processing and it was just that nobody can make that shift and there's still not a great shift
Adeel [17:31]: So if you can't see the behavior, then you treat the behavior. I mean, it feels like a professional's not wanting to dig deep into a root cause of something that they can't see. I think I might have said that wrong.
Dr [17:42]: If you can't... All you can see is the behavior, so you just do the behavior. So you only treat what you can see.
Adeel [17:52]: Gotcha, gotcha. Okay.
Dr [17:53]: And that was really from the 50s, 60s. And it... It takes a long time in psychiatry and in psychology, and certainly within DSM, it takes forever to get something in. It takes committees. It takes money. It takes a huge amount of advocacy. And this is also true of the International Classification of Diseases, which is the ICD, which is also used. You just don't get something in. At some level, what gets in is really dictated by psychiatrists, by medical doctors as well. Well, psychiatrists are medical doctors, but it's not directed by people suffering from these diseases, disorders, illnesses. There was very little voice of the people who the real sort of lived experience didn't get included.
Adeel [18:50]: Right. So if you're only treating what you can see, you're not treating what is only being felt. Maybe that's kind of what, as a sufferer, we're feeling this. We don't really know how to explain it. Other people can't see it.
Dr [19:02]: Well, not only that, it is not, look, in this day and age, measuring a physiological response is easy and it's cheap. Now, I'm not saying there isn't... there are there is difficulty with physiologic data for example you know i could be running or i and my heart rate might increase or i could be sitting in a chair having an anxiety attack you know and there's nuances to how this is all measured that was just a very gross way of putting it so physiologic data is not always as perfect as one would think however in this day and age To me, that should be the beginning of most research studies about misophonia. At least get the physiologic data.
Adeel [19:50]: Right, right. Yeah, because I was almost going to say, like, you can't see misophonia. But yeah, when we're all being triggered, you can definitely see that something's going on.
Dr [20:00]: It's measurable. It is absolutely measurable.
Adeel [20:04]: So I guess maybe, yeah, then shifting into like, where would you like to see research? Like, how would you like to think?
Dr [20:12]: I know you asked me that before. I didn't answer. I'm so sorry.
Adeel [20:16]: No, no, no. It's fine. It's kind of like how I like to weave around. Yeah.
Dr [20:18]: Okay. So first, I would like to see, again, more family research, more research related to how families function. I would also like to see more rodent models. And I know that sounds a little... Interesting. Yeah. And here's the reason. There was a great study that I funded that never, unfortunately, never was published. Not because it shouldn't have been published, but because the person who was the PI had to leave the country. And then there was a pandemic. But there was a study... that i funded with joe ledoux um again he was at nyu his lab unfortunately he's retired his lab is closed he's still writing but and here was how it went and we were looking he was looking at the amygdala and part of the amygdala that was sort of the incoming sensory information versus the output of the amygdala. There's two separate sections. I'm not a neuroscientist, so excuse me, but I'll do my best. So here's how the experiment went. It was with rodents and the rodents were exposed to sound. I know this leaves out visuals, but at the best we could do at the time. So the rodents were exposed to sound. And the rodents were then grouped. So some of the rodents were super responders to sound, meaning they went into that fight-flight response. Or in fact, they froze, which is interesting too. Some were high responders. Some were typical responders. Some were low responders. So you have a whole variety of how these rodents came in. to the situation to begin with. Then, very classic Pavlovian conditioning, which is what you want to do with rodents because you can see clearly because they don't have, obviously, the cerebral cortex the way that we do. They don't have as much of a thinking brain. Most of us do, yeah. Right? Most of us do. Exactly. And what happened was the... We used repetitive sound because I personally think this is all about the repetition of sound and movement. That's another story. So we used the repetition of sound paired with a very unpleasant stimuli, which I won't mention because who needs to think about that. And normally a rodent can unlearn. the association of the unpleasant stimulus and let's say the repeated sound. But guess what happened? These super responders were the group that couldn't unlearn. Now, you could never do this in a human, obviously. But what does that tell us? That tells us that if you're going, first of all, that a risk factor for misophonia may in fact be the fact that you're already responsive to sound. Second, and I hate to say this, but this to me could indicate, I'm not saying it does, could indicate that these learning models we use in psychology are not going to work. Because if you can't unlearn that association, you can't, you know, it's similar to trauma that way. You can't unlearn it. And I think we need to do more research like this before jumping into potential therapies. Because most therapies are learning-based, really.
Adeel [24:17]: How were they, in this experiment, how were they trying to unlearn? What was the method to try to unlearn it?
Dr [24:24]: You then associate the stimulus with something pleasant. Okay, gotcha. Eventually you would see, and think about it. Yeah. So you know what I'm saying, Adeel. So I would like to see more research. I don't want to torture animals by any means. And I feel badly about that. But we learn so much. So I'd like to see more research because this is basic science. This is the science that we can learn about the underlying mechanisms of... misophonia so that's one of the things i'd like to see super interesting yeah yeah kind of out there it sounds but you know i hope that i think we have to learn about these basic processes and how they relate to misophonia before we jump into okay how do we fix this we can't fix something that we don't know what it is unless we just happen upon something by accident right right right right
Adeel [25:21]: And going back, you did mention when we're starting out something about obviously more research in family, like family research. You also mentioned development, like child development. Do you want to talk a little bit about, expand a little bit about that? Because that's something very interesting to me as well, like what happened back in the day.
Dr [25:39]: Absolutely. We don't know when misophonia starts. We know that people report it starts between 8 and 12. But, you know, How would you know if you had misophonia when you were two years old? You don't necessarily, most people don't remember being a two year old. So first of all, we need ways to understand what the early symptoms are. Now, in my case, I'm like everybody else that remembers it starting at, for me, fourth grade, so eight, nine years old. But again, because I had it, I recognized the symptoms in my daughter much younger. So what I'm wondering is, how much are we missing? The best time to intervene is when a child is young. right, the younger, the better. We just know that. That doesn't mean that when you're older, you can't, you know, we have, we know that with neuroplasticity, the brain keeps developing. Well, first of all, it develops continually until 29, I think it is now. It used to be 26. Before that, it was 23. And we also know that older people, you know, the brain can change. But the best time for intervention is when a child is young. And I feel that without concentrating and focusing on what might be these earlier symptoms, we're missing the place to go in. So I would like to see more research that helps to identify what might be risk factors and when it really starts.
Adeel [27:24]: So yeah, I'm curious in how would you, I guess you would have to just
Dr [27:30]: ask the general public to like how would you get people because you wouldn't know at that point right you need to find you know you need there are i certainly get enough people coming to me and asking questions about this there you need to find the youngest cohort the parents who are coming to you with the youngest cohort and start there what else could you do that's the way to start what did you see and we need to take information from let's say sensory processing disorders autism research all you know yeah all fields of and even medical disorders i mean we you know i know duke took a good did a good survey on medical histories but i don't think anyone else has so we don't even have the medical histories of of these children or of these adults with misophonia so we're missing this kind of vital information so we would have to find you know first of all parents who have identified something's going on here you know and that's how we would start we have questionnaires we'd have to see what are the symptoms and we have to follow those children so this is developmental research it takes years but at the end of the day in 10 years at least you have a better idea than if you don't do it
Adeel [28:51]: Right, right. And I think, I mean, just misphony awareness is part of that first piece. Then those parents might, you might reach for parents who will be able to identify something.
Dr [29:02]: Yeah, I mean, with my child, it was so obvious. I mean, she, and I've told you this before, and I always tell this story. I mean, she literally, you know, I have triplets, so they're all sitting at the table, and I'm serving food, going back and forth, which, again, is very helpful for me. And she literally just... crawled, took her plate, crawled across the kitchen and sat in the living room. I mean, sorry, in the entranceway. And I was like, well, that's odd. And then within a few weeks, and it does, it still had that, oh my gosh, this is coming on like suddenly. And then she would just cover her ears and say, stop chewing with a very cute little, little kind of speech of a two and a half year old. I'm like, Okay, so maybe that's happening with lots of parents and they can identify that and they just don't know still.
Adeel [29:58]: Yeah, yeah. We don't know, right.
Dr [30:00]: I mean, she couldn't have been clearer. I don't want to eat there. The chewing bothers me and she's yelling and screaming and, you know, her hands are like this over her ears. I mean, I can't imagine my daughter was the only one to give such a clear signal.
Adeel [30:14]: Yeah, yeah.
Dr [30:15]: At such an early age. It can't be.
Adeel [30:17]: And I've, yeah, I've had a few people come on and say that they, they know that at a very young age that they, that they had it. Obviously most people in their eight to 12 bell curve, but there are some outliers and, but yeah, but maybe those eight to 12s just don't remember or were not able to identify it.
Dr [30:36]: I mean, memory is such an elusive memory. If there's anything that confuses me, in life besides genetics and epigenetics, memory. Memory is the most confusing part of psychology, I think, and neuroscience. It's really elusive.
Adeel [30:55]: You mentioned epigenetics. That's something that I loved. I remember specifically, I tell people I loved talking to you about that. So you were very enlightening about that topic. Is that something you're still thinking about these days?
Dr [31:08]: It's so funny because I feel like, you know, as I just said, I mean, for me to be enlightening people about epigenetics is... almost funny because i'm constantly talking to geneticists who are and i'm like wait what's explain this again but i think if you ever want to have by by the way someone come on and really explain epigenetics michael minino oh yeah of course but my little definition of it that that is simple so maybe it's better if it's simple yeah the thinking and we are in the genetic revolution right now just like we were sort of in the neuroscience revolution 30 years ago and so it used to be that people would think okay if you have a gene it will express itself either it does or it doesn't epigenetics we're talking about a gene that could be turned on or turned off now Turned on meaning something happens in the environment. That could be the environment of your body. So that could be, I mean, it goes into lots of detail about like methylization and things that I don't really understand. But so it could be something, you know, that changes in the chemistry of your body, let's say. that then sets off this gene or genes, and then all of a sudden you manifest a disorder. It could be a virus. I mean, we've seen that. I think we all know now that viruses absolutely can cause diseases, or they may not. So that's kind of what epigenetics is. The idea is that a gene can be turned on or turned off. and it can be turned on by a different chemical reaction in your body, or it can be an outside environmental issue. And that environmental issue could be a trauma, it could be a toxin, or it could be a virus, which is really a toxin. and that's a different way and that's how pretty much everyone's looking at genes now so it's not the question of what is the misophonia gene there will probably be several genes that contribute to the for me the manifestation of misophonia and it will likely be epigenetic it will likely be some people may be carrying those genes and just whatever for whatever reason they don't manifest this disorder and others others don't i don't know if that made sense i hope
Adeel [33:42]: yeah no it totally does uh to summarize i mean there's no like black and white gene that just completely you can like look under a microscope and tells you if you have it or not but it's more uh an interplay between that uh that gene and how i think what by the way how like a gene expressing itself is basically how it turns into a phenotype phenotype is like you are you what you actually are so machine turning it computer, computer code, and then the website, you know, it's like the code is the gene. And then the website is like you. And so, and so if there's basically the environment can affect how that, how you look like. Slightly, maybe I get confused myself at the end, but, but yeah, no, it's fascinating. And I had not really considered that before, but it makes a lot of sense. And I think it's important evolutionarily wise. Right. because I think we're constantly evolving and is misophonia, I personally don't think it's like a defect. Is it something that can kind of like help us in the future or we need certain people who are extra sensitive to sounds?
Dr [34:53]: We sure do. I mean, I'm so happy that you brought up evolution because my feeling about this disorder is that one of the things you ask in evolutionary medicine or evolutionary psychiatry or whatever is why did this trait or whatever you want to call it this disorder this trait whatever you're looking at why is it continuing if it wasn't adaptive it would you would it would die out so for example my feeling really my my deep feeling about misophonia is that it actually is an adaptive trait or was it isn't now it is not good for now but if you think back to let's say times that we were and there are still some very few tribal societies but if you think about the cue of sound and how it can protect you. And the fact that it could protect also your kin, you know, your family, your people. And I know Jane talks about this in her book with the super guards, right? So I know your book too, as well, which I loved, by the way. And yeah, it was great. And thank you for your contribution in that book. So I think the natural aversion to pathogens, right? And I don't want to name the triggers, but it's pretty obvious what they are, right? Yeah. Okay. Gives you an advantage to survival. So I think we're pre-programmed to alert to that kind of stimuli. Now, if I was living out in a, you know, I don't know, a desert or whatever, and I was looking and I'm, you know, I, in order for me to survive within the group, I don't want to go near someone who is, you know, making those pathogen sounds. But one sound, and I don't want to bring up the trigger sound, but that I've always thought about, why chewing, why chewing? And it literally, okay, this dawned on me the other night, and it might be a little out there, but I'm going to say it. Because I have thought about this for 25 years.
Adeel [37:23]: Yeah, yeah, please, please. I've got some weird thoughts, too. Or not weird, but out there.
Dr [37:27]: I used to think maybe it'll tell you there's a predator there.
Adeel [37:31]: Yes.
Dr [37:32]: And I thought, you know, then I also thought, why would you go into fight, flight, or freeze? when someone let's say you hear chewing let's say you're an animal this is why i want to study animals by the way because we'll get to the basic real processes of these and we'll know how to help people so if And I pulled up actually something, 2011, now I'm not going to remember his name, Mark something, but I can look it up, who talks about, and I'll go back to the predator thing, so I'm kind of all over the place, but back to the, you know, we don't want to get near pathogens and it's kind of normal if we want to survive. There was something called the behavioral immune system. And it was termed in 2011. And again, it's marked something. And I apologize, wherever he is. I don't remember his last name. But he talked about these evolved behaviors that actually are like an immune system. They work like an immune system. How does an immune system work? Boom. you over overwhelms the rest of the system right so this to me i love that term and i just discovered it the other night while obsessing on misophonia then i also thought to myself why would you go into fight flight if let's say let's say i'm an animal and there's an animal chewing i mean we're all animals but you know then there's somebody chewing near me a tiger or whatever then i thought what if i wanted to get that food and the only way to get it was to fight this animal so i thought it's not just fear from predators and i i thought i don't know if i'm making any sense a deal I was watching my dog, I have two dogs, and this little thing is sitting there watching me eat. And I thought, oh, how sad. Poor thing wants the food. Then I thought, if this dog was starved, it would attack me for the food, even though it loves me. And it made me realize that maybe part of that fight-flight response is really rooted in the idea that we have to fight for food. I don't know. I'm just putting it out there.
Adeel [39:50]: Yeah. That makes sense to me, especially if you talk about this is pre-programmed from a long time ago, back in the amygdala, the roots of the brain. It was a funny story. Somebody I just interviewed said, COVID would not have been a thing if they just let people with misophonia
Dr [40:14]: go look for coffers and just deal with them like a canine unit absolutely absolutely and you know the the thing is the deal when when we're talking about things that are so rooted not in the neocortex which is you know the part of the brain right in the evolved later but yes how do you fight that it is the hardest it's the same thing with trauma right trauma memories they are easy they come back they're more retrievable it's in your body how do we overcome something that is so innate and One of the reasons I get irritated by a lot of the treatments out there is I'm like, this is too deep. This is way too deep in a person to just treat it and cure it.
Adeel [41:07]: In a behavioral way. Yeah. I think, I think there's certain things, tools you can use to kind of like in the moment, kind of like that help. But, but yeah, I think there's a deeper component that's more instinctual. Exactly.
Dr [41:23]: And that's why I want to study animals or rodents really.
Adeel [41:27]: Yeah.
Dr [41:28]: You know, because if we understand what these basic processes are, we have a much better chance of knowing how to work against them, really.
Adeel [41:38]: Right. And then sticking with kind of one, since we're going out there, the ideas and thoughts, there's one other thing I had was like, just trying to think about like, you know, I'm always looking at, were there cases of this in, you know, in history that we hear about in history books? And, you know, there aren't, but maybe there were, and they're just not written about. But I just got to thinking like, you know, back in the day, you didn't have like, homogenous set of jobs. Like you had, you kind of fell into your role based on whatever you were, whatever you were like. And so maybe because we're forced to all kind of these, have these sit in an office, have these homogenous jobs that Now these differences are being being accented because, you know, we're not the ones that are supposed to be sitting in a in an office.
Dr [42:27]: No, we're not.
Adeel [42:28]: We're noticing it.
Dr [42:29]: Oh, I absolutely agree. I mean, and it's the same argument could be made for, you know, attentional disorders, you know, ADHD, you know, hyperactivity. And a lot of people, you know, years ago would say, well, how do you know, there are some kids. just shouldn't be sitting in a class you know in the classroom you know that this isn't a problem in the child it's a problem in the environment or in the interaction between the person and the environment and i think that's very true of misophonia and i think i tend to think that it is actually on the rise i mean 25 years ago, I couldn't find, I think I told you this once, but I found one other person besides my daughter and I that had these symptoms of what we now are calling misophonia. And I was everywhere looking. So I feel like it can't be, I mean, it's possible, but I feel like there's such a, there is a rise in this and it's not just everybody becoming aware, but I think you're right. Yes.
Adeel [43:30]: I feel like, right. Sorry, go on.
Dr [43:33]: we're overloaded with stimulus stimuli i mean there's too much coming at us we're sitting we're not moving we're just you know and and the visual and the auditory all the senses integrate and work better when they're integrated how are our brains changing when we have constant input constant doesn't matter if it's visual if it's auditory if it's tactile the brain changes as we evolve and i don't think we're evolving and this is what you said fast enough to keep up with this
Adeel [44:05]: right right right it's it's kind of ironic that i think we we kind of like we kind of sit and stare at this at stimulation um because we think it's relaxing us in some way like you know when you're sitting with your phone or whatever um but it's it's it's not maybe it's just not the right stimulation maybe it's too artificial but uh i think it's one thing you know if you're watching you know kind of old style watching um
Dr [44:30]: program or an event or something on a screen but I think one of the things that's happening is all the pop-ups and the speed and the all of that coming in together I don't know how people process that and that drains your resources and then misophonia is going to be worse if you have it but having said that That doesn't mean that parents shouldn't allow their kids to use screen time because I think it can be helpful. If it, like you said, if it's the right thing, like sometimes I'll just watch penguins walking around, you know, sounds ridiculous for an adult, but it's like very soothing to me. And, and, you know, the other thing, it is impossible. to not use technology today for most people in the United States. And in fact, if you cannot use technology for whatever reason, if you're unable to afford a computer, you're at a great disadvantage. We can't just say everybody get off the computer. No, no, no. We can't. It's done. We're done. It's here and we need to adapt and figure out a way to make it less overstimulating.
Adeel [45:41]: so you did mention um and i didn't want to get into like visual triggers mesokinesia um do you you know in your in your in your counseling is that a big part of your consulting along with misophonia because i do agree like i don't think Well, I don't know if that's the right term. I feel like in five or ten years, it won't necessarily be misophonia. There might be another term because we'll find that it's a combination of things like I think you've alluded to. How do you see Misokinesia in other senses, really? you know, in how you treat people?
Dr [46:17]: Okay. Great question. I think the whole, whole idea of misokinesia, which is so fascinating to me, that was termed by Arjun Schroeder. I may be saying his name incorrectly, but I have corresponded with him several times. And in fact, I have an interview with him way back when on my psychology today blog. And was driving me crazy because misokinesia if you break it down means hatred of movement right right what he originally meant and i was like it's not just it doesn't mean just the visuals so what he meant and boy was he right about this he was wrong about a lot of things but that's what he was a student at the time and everybody was wrong so you know but he was so right about this when there are people for whom when you are watching someone else's movement particularly that repetitive habit-based Leg tapping. The Jimmy Legs. Yeah, that kind of stuff. That kind of stuff that you are triggered. So that's one visual trigger. The other visual triggers, which now have fallen into this umbrella of misokinesia, so it's kind of not termed right, are the ones that are associated with the sound.
Adeel [47:40]: Right, right.
Dr [47:41]: Two things going on here.
Adeel [47:43]: Yeah.
Dr [47:44]: And everybody I know that has misophonia, well, not everybody, but anecdotally speaking, most people I work with absolutely have the associated triggers, not necessarily that misokinesia type.
Adeel [48:01]: yeah right kinesia comes from kinetics which is strictly a movement it's not just it's not just you know sight right so optical or something is yeah i mean i think the term is is great actually and it you know i mean like i know when people are pacing in front of me i i just want to it's not quite as
Dr [48:23]: bothersome and i don't think i get quite as much a reaction from a sound but it's it's it's i'd say it's very unpleasant and it i can't process it and it gets me really like you know it may not be as strong as the sound because sound travels the fastest to the amygdala
Adeel [48:46]: Oh, really? Okay. Tell me more about that. Because, you know, obviously sound travels slower than light, but there's other processes in the way.
Dr [48:55]: Right. Sound, the reason Joe Ledoux, again, obviously I'm extremely enamored with his work.
Adeel [49:02]: Oh, I have his books too, yeah.
Dr [49:04]: I mean, you know, the... He once told me, you know, the reason I study auditory is because it's the stimulus that travels the fastest to the amygdala. And he told me this about 15 years ago, and I was kind of like, that's what precipitated that study, too, that I was telling you about with the rodents that he did. And there are, so to me, you know, If it's something visual that you're looking at, in theory, let's say if you're looking at somebody doing leg tapping, one of my favorites, let me tell you. I can look away. I've got some things I can do. It's maybe hard to look away, but I can do it. You can't look away from sound. You can't do anything. and it's traveling the fastest to your flight system which makes sense when we talk about evolutionary because you know what's i think the things that you know sound is sound is a cue for danger it's that simple
Adeel [50:15]: Right. No, that second part, I didn't realize that it's the fastest to get to the amygdala. But I think you were just saying something that I've said on the podcast. I can not look at something. I can hold my nose. I can not touch something. But even if I block my ears, I can still hear stuff. It's the hardest sense to block.
Dr [50:41]: Yeah. Oh, absolutely. No doubt.
Adeel [50:44]: No doubt. It's the best choice if evolution wanted to use a sense for alerting you of danger. That would be the best choice.
Dr [50:52]: Yes. Absolutely. Exactly. And I think, you know, once we, and I do, most of the people that I, you know, originally I thought, oh, this is the same as sensory over-responsivity. But I take that back. And I have taken that back. Because what I have found, and again, this is all anecdotal, and some of the research is showing this as well. This is very specific to sound and visual. And then there's maybe the misokinesia part. But when you start adding in olfactory, which by the way, I am very olfactory sensitive. When you start adding in tactile, when you start adding in everything else, it then becomes the sensory over-responsivity subtype of sensory processing disorder. I don't think, again, anecdotally, but I think most people, maybe I would say 10%, 25%, just totally off the cuff, people have these other sensitivities. But for the most part, when you're talking about misophonia and people who experience that really elevated sympathetic nervous system arousal, it's sounds and it's visuals.
Adeel [52:08]: Yeah.
Dr [52:09]: So I don't think it's the same at the end of the day. But we really need more research because that could be something. You know, that's an important area of research. And it is happening. I have to say people are looking at that.
Adeel [52:23]: So that's good. Yeah. Speaking of research, one thing I've thought about... is you know i've talked to now it's been like over i was looking it's like 180 just uh podcast episodes and there's there's always um and someone just sent me an article called literally called walking on eggshells today and so one thing that comes up a lot is in childhood um there's usually some situation where you are you have to be on alert for something in your in your environment. I guess this comes back to epigenetics and whatnot, but I don't, I personally don't know anyone like really looking at their research, like looking at, you know, that, that commonality that I've noticed where there's like maybe an alcoholic parent or there's some kind of, or schizophrenic or BPD or something that causes a child to kind of walk on eggshells and not be kind of like explain what's happening. And so, Do you think about that? Do you notice that? Or do you feel like that's... I don't know.
Dr [53:31]: I think there's two ways to look at it. And I think to some degree, psychology and psychiatry has done both of this. But again, the developmental work is so different than what creeps into the adult work. So there's a couple of things. So any environment that is where someone feels not safe whether it is a family environment whether it is the neighborhood whether it is the school the not good right it's just not great and of course we're going to react to that. Now, does that cause misophonia? I don't know. But here's the flip side of this. And here's the real question. Why does one person... in what you're talking about which is a traumatic situation develop a traumatic response and another person right right right yeah and that's yeah and that's the question so then you have to kind of look at what either go how is the child born like a super responder rodent did you just come into the world as with somebody with a more fragile system.
Adeel [54:51]: I want that t-shirt. I'm a super respondent.
Dr [54:53]: Do you come into the world more fragile? Right. And you know, the other thing that was really interesting, I guess in the late eighties, I could be a little bit wrong, but there was a lot of, and into the, let's say the early two thousands. So there was a lot of work on the it was called the mother child dyad but we know that's wrong and we should be saying the caregiver child diet but the work if anyone's looking for it will be in mother child if you're looking to look it up but a lot of work was done in terms of temperament and in terms of goodness of fit and the idea of this is you come into the world me let's say i come into the world And whoever is my caregiver, and often you don't have one caregiver, but let's just broadly speaking, do we fit temperamentally? Do we fit on a sensory level? So actually one of the papers I wrote had to do with, actually, I could send it to you, but the idea is some kids come into the world with a more, fragile sensory system or a sensory system that just doesn't match that of their caregiver so perhaps and i've seen this perhaps my daughter is over responsive to sound and well-meaning grandma is extremely loud extremely intrusive all over the place guess what happens trauma not because anyone did anything wrong right right right or anyone was malintended So I think when we talk about the sort of trauma response that we see in misophonia, we have to ask, again, why some people and not others? That's how we get to the bottom of how to treat it.
Adeel [56:54]: Right. Yeah, you're right. I've had a lot of people come on and they've had siblings and it's not, you know, not affecting anybody.
Dr [57:00]: I had triplets. Like why one and not the other two? You know, so there's something to that. And it could be in utero. You know, it could be anything. We don't know. But we need to know more. And these kinds of, this kind of research that we're talking about is a lot less. interesting to people because it doesn't give you the answers right away like how do we cure this how do we treat it but it's neat and we need those treatment studies we need all of that but we also need to develop i think much more higher level and sophisticated and integrative thinking about misophonia We need to bring in research from basic neuroscience much more. We need to bring in old research from, let's say, the parent-child dyad, all of that, and integrate it. Because all the questions you're asking, Adeel, are all the questions that I ask. But the ones that get answered are the ones, I think, that may lead or look like they're going to lead to an answer. But we need, I think, a lot more.
Adeel [58:14]: The stuff that you were saying that people find uninteresting, I find those super interesting. I think I'm like you. I guess my worry is that probably like you, if we're focused too much on the quote-unquote looking for the magic bullet, we... I don't know if we're going to find one. And so we need to be a little bit more diverse in our thinking.
Dr [58:37]: And I think that's so true of, unless the only, I mean, I'm not, you know, one, the only magic bullet is, even medication's not a magic bullet. There's no magic bullet for any of these things. And I think, you know, if you look at depression, let's say, or anxiety, you will see that not it is not you know it's not just treatment studies you will see the evolutionary studies you will see the medic the medicine studies the you know you will see people just think you know scholars thinking about what depression might really be and with misophonia we're just so at the beginning that we have this you know it's great we have more research than than we have ever had but we don't have all of that other informative research that helps us think about misophonia.
Adeel [59:29]: Yep. Yeah. So I would say like we're about an hour, a little more than an hour into it. I mean, we can go keep going. I mean, even on that note, I'm like, is maybe misophonia is not profitable enough, you know, for people to pursue, you know.
Dr [59:45]: I will tell you a deal.
Adeel [59:47]: Yeah.
Dr [59:47]: I think it's profitable and I think that will work for us. How do you tell people to be careful?
Adeel [59:55]: Well, maybe we should kind of have that as one of our last topics is maybe just kind of like what to people who are looking for answers in an environment where there are not a lot of definitive answers. You know, there's people writing stuff like yourself and Jane's book. But like, yeah, maybe some guidelines on how to tell people to take care of themselves.
Dr [60:16]: Yeah. I mean, I think great question. I think. one thing that chris of so quiet of course you know of course i know you know that we are talking about and that you know we always talk about is how do we get the lived experience to the researchers so that's number one we need the researchers to understand the lived experience and when you know i think we all have an instinct something's not right with this. And I think what happens with a treatment or a person or snake oil, whatever, I think one thing, what happens when you're desperate is you will, and we're all desperate, will do something that you wouldn't ordinarily do in the hopes that it works. And you think, well, how could it harm me? But I think what people have to realize is it is harmful. First of all, for children, Once you subject a child to this nonsense, they start, and I've seen this happen, they lose trust in the entire helping field. So you are, you know, that's harmful. We know graded exposure therapy is absolutely contraindicated and harmful. How do we get that out there more? I don't know. I write about it incessantly. But I do feel like people say, but what if it's the only thing? It doesn't mean it works. So I think people have to really resist the temptation to do things that might be harmful. I think, for example, the... therapy and treatments that are going on at duke for example are not going to be harmful they may if they work and help you with coping skills great and that's what they're really based on you know no one's saying hey we can cure this we can reduce your triggers i mean when you hear someone talking about that walk away if somebody says i can reduce your triggers in three weeks and That's not even how you measure misophonia, the reduction of triggers. So I think people have to really, unfortunately, still at this point, really do a lot of searching and find that which is the least harmful and also understand that you're putting your time or your child's time and your trust into people and that a failure in that interaction can be also, I think, traumatizing.
Adeel [62:59]: And I've heard, you know, there are, yeah, there are people saying that, oh, I've had this play, I don't have it anymore. And I've heard that when you dig into that, though, there isn't one thing that, first of all, we don't know how long that's going to last, but there's never one thing, the one thing that they're trying to sell that actually worked. It's kind of been a lifetime of trying many different things, probably things layered on top of each other that may help a little bit. And so I think that's wise to kind of like be skeptical of saying somebody is saying one thing is going to help, you know, cure something.
Dr [63:33]: Exactly. I mean, I can certainly say my misophonia is better, but I'll tell you why it's better.
Adeel [63:38]: I'm 65 years old.
Dr [63:41]: No, you know what it is? I'm almost 60 years old. I don't have to go.
Adeel [63:45]: Don't look it, by the way.
Dr [63:47]: Thank you. Thank you. I have control over my schedule. I have control over my atmosphere so much. It's the, my environment has changed. Not me. And so if I were to go, if I were to be like a young mom again, out there taking my kids here, working with other people in other places, it would all be there. It's just that right now. I'm able to stay home. Not that I'm saying people should always, you know, stay home, but I'm at a point in my life where it's the environment.
Adeel [64:20]: Agency. Yeah.
Dr [64:21]: Right. So I have more agency, you know, and I think, so when people say my misophonia is better, we have to be cautious because is it that there was an internal change in you or did your environment change or both?
Adeel [64:35]: Combination. Yeah. Yeah. Usually you do the people who get to the point where they feel confident to say that they've tried a lot of different things and have taken bits and pieces that have worked for them.
Dr [64:44]: And so that's, that's exactly what, and that's what coping skills are all about. You have to take bits and pieces. You know, when we talk about a multidisciplinary model for misophonia treatment and, and that's, you know, something I've always said needs to happen. It, you take little pieces of things, different disciplines to help yourself. And what I hope is that more people will work in that multidisciplinary fashion. I work with a lot of OTs. I don't send somebody for OT for misophonia, but I will send somebody, for example, to have a session with an OT who are great in terms of helping people self-regulate. If they need OT for other reasons, then sure, they'll go. But so I, you know, we'll send people and then I'll integrate that into my work. But that takes a lot of extra work.
Adeel [65:41]: Right, right. Yeah, fascinating. Anything, anything else you want to share? This is like super interesting. I'm going to, I can't wait to edit this again and take copious notes.
Dr [65:53]: Please take my phone ringing out. Oh, yeah. It's, you know, I really think it's so interesting to me, Adeel, because you and I have had this talk about misophonia, where we're really, we're doing what I would hope is higher level thinking about it. And We definitely need more of that. Why do we have misophonia? As you asked, as Jane asked, was it adaptive at one point? And now here we're stuck with this. How much are we increasing the reaction to stimuli because we're overload? All of these things we need to think about. And, you know, research in the United States, I always used to say this, and Zach and I used to kid about this. It was really great to do research in the UK because you could think. And it was, you know, this stringency that we have to get something through an IRB, to get funding, all of that. No one's going to fund, let me let you think about misophonia here. so any thinking deep thinking that goes on is either because a researcher is extraordinarily interested and also has a much you know a broad understanding of a multi-disciplinary research paradigm or treatment or they're thinking about it because they're you or me Right. So no one's paying anyone to think about this.
Adeel [67:25]: No one's paying me.
Dr [67:27]: No one's paying. Right. Exactly. And that's that. So that's part of the way it's kind of set up in the United States.
Adeel [67:35]: Right. Right. Yeah. And one of the one thing I always when I'm kind of like feeling like the world is against me, sometimes I'm like, well, are people looking at me saying, are you just overthinking this? You know, I feel like in the United States, everyone talks about, oh, we should be thinking more about mental health until they tell you you're just overthinking it. Just, you know, snap out of it.
Dr [67:59]: That's right.
Adeel [68:00]: It's not a headline issue. It's not a headline disease kind of thing.
Dr [68:04]: It's exactly. And I think. That is why I make such a fuss about people calling it neurophysiological. And the only person who came around to that was, in fact, Pavel Jastrowoff, who I don't know whether you saw his article, A Neurophysiological Model of Misophonia. And the reason I pick that... is because it's right it's a neuro it's a neurological response that has physiological consequences of course it also has emotional and because well we know that and cognitions we know all that but at its root now so when people say oh it's an emotional disorder a psychological disorder i get nuts because that's when you put it into the realm of do you does that person really have it or can they just snap out of it you know what i mean It minimizes the experience, the lived experience. So I get very picky about that. And I do think one of the awareness efforts that we all have to do is really, and I know there was a consensus definition, but really, what are we going to call, how are we going to describe this? Because it's so important.
Adeel [69:21]: Yeah, that's interesting. Yeah, I want to make sure that I'm not sloppy on what I call it as well.
Dr [69:27]: No, I mean, you know, that's the crazy thing about medicine. It's like every medicine, you have different names for the same disease. It's a mess. I mean, and this, what's so awful is that this mess that, you know, we inherit this mess as patients or as those who need therapy. And we inherit the mess. of this terminology that is in medicine as well. So I think, again, one of the awareness efforts is really coming to terms with how are we going to describe this in a way that subsumes every part of this and is accurate. And the reason the problems exist because every field. So if you're psychiatry, you're going to describe it one way. If you're OT, you're going to describe it another. And that is part of, I think, why people will say, just snap out of it. Because how do you understand something that's not described?
Adeel [70:24]: correctly. Yeah. Yeah. Well, hopefully, yeah. Hopefully, hopefully we'll get there.
Dr [70:30]: We will, we will get there. We're getting there. If it's any consolation, we're moving a lot faster with misophonia than we ever did with sensory processing disorder. That is a good thing.
Adeel [70:42]: Yeah. No, that's great. And I know we'll, we'll, I'll be there at the, to call the shots when, as that happens. And I know you'll be there writing about it and obviously helping people. So. Yeah, Jennifer, I want to thank you. Thank you again for coming on.
Dr [70:56]: I hope I wasn't discouraging. I mean, I feel like I would have never said any of this five years ago because there would have been no research to talk about. So at least now we can talk about the research and what should happen next and what's going wrong, what's going right versus we need research. So, I mean, you know, I want to end on a positive note by saying we are a lot further along than we were five years ago and certainly 10 years ago.
Adeel [71:21]: Right. Yeah, we can all definitely celebrate that. Well, thanks again, Jennifer.
Dr [71:27]: It was great to talk to you, Adeel.
Adeel [71:29]: Thank you again, Jennifer. Incredibly thought-provoking conversation as always. Looking forward to having you back on in the future. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at misophoniapodcast.com or go to the website, misophoniapodcast.com. It's even easier to send a message on Instagram. At Misophonia Podcast, you can follow there or Facebook. And on Twitter or X, it's Misophonia Show. Support the show by visiting Patreon at patreon.com, Flash Misophonia Podcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [72:21]: Thank you.