#212 - Jaelline Jaffe PhD, LMFT

Adeel [0:05]: My name is Adeel Ahmad and I have Misophonia. This week I'm talking to Dr. Jaleen Jaffe. one of the most experienced therapists working with people with misophonia over on the West Coast. Jalene shares her journey from teaching to becoming a therapist specializing in misophonia. We talk about a ton of things, the importance of family support and school accommodations, and we get into her own protocol for approaching misophonia that incorporates cognitive behavioral therapy and dialectical behavioral therapy. We spend a lot of time highlighting the role of adverse childhood experiences and epigenetics in understanding misophonia, and she emphasizes the need for mental health professionals to be aware of these factors in treatment. There's a ton more, but I want to mention... We also talk about the Misophonia Association Annual Convention, for which she is a co-founder and board member. It's happening again this October 16th weekend in Phoenix, and we talk about what it's all about and how you can learn more. Also, I want to mention her new book for clinicians called These Sounds Are Driving Me Crazy, Training for Mental Health Professionals in Treating Sound Sensitivity Disorders. It just came out and is available at sensitivetosound.com slash training. The link is in the show notes. I'm going to breeze through the announcements just because you got to hear this episode. You know how to reach me already at helloatmissiphoniapodcast.com. you can book a time to come on the podcast at misophoniapodcast.com, and you can join supporters contributing to the podcast at patreon.com slash misophoniapodcast. Now, I should warn you, I start right off the bat by mispronouncing her name, even though I've met her several times in person, but she graciously corrects me. But here it is. Here's my conversation with Dr. Jolene Jaffe. Jaylene, welcome to the podcast. Great to have you here.

Unknown Speaker [2:13]: Thank you very much.

Adeel [2:15]: I appreciate it.

Unknown Speaker [2:16]: Nice to be here after a long, long time of knowing that you do these things. It's really cool.

Adeel [2:22]: Yeah, no, this is exciting. We have a lot to talk about. First of all, for the people who might not know who you are, do you want to tell us a little bit about what you do, where you're usually located?

Unknown Speaker [2:36]: Yeah. So first of all, my name is pronounced Jalene. Ignore the... That's not your fault. It's the fault of whoever created the name. Anyway, it's... Yeah. So I'm physically located ordinarily in Southern California. And I have an office in Sherman Oaks, which is in the San Fernando Valley. And I haven't been working out of my office since the pandemic. I've been working from a home office. So that's that piece of the background.

Adeel [3:16]: Great. Okay, cool. And yeah, I mean, so you started, I mean, I'd love to hear a little bit, you know, a lot of people don't know maybe your background, I guess, you know, before you were treating misophonia, I guess you started as a teacher at some point and kind of evolved into therapy and now misophonia. Do you want to just kind of briefly talk about how you, your journey to getting to misophonia?

Unknown Speaker [3:39]: Yeah, I was a teacher for a number of, years and I worked in the school system actually total of about 40 years before I retired from that piece of my life but concurrently I was doing therapy what happened was I every year would go down to a lower grade level trying to figure out like where do these kids get so messed up And then I finally figured out, oh wait, they come to school that way. So I went back to school and started to work in the field of family therapy. I got a master's degree and then a license as a marriage and family therapist. And then later I went back and got a PhD in counseling psychology. And so as a therapist for a long time, I worked with couples and individuals and families i didn't work so much with kids because i was with kids in the school system and after i formally retired from the school system i just went was doing full-time private practice without kids because i thought i'm done with kids been that for a long time i'll just be working with adults i stumbled into this field By either accident or divine providence, I don't know. I had a medical problem of my own that I thought was going to put me out of my ability to do psychotherapy. And I went into a very deep pit of depression and fear and lots of mixed feelings about life and forth and I thought how am I ever going to continue from here and then I thought well you know what finally came around a corner and stopped crying in the dark and said you know what I could maybe help other people who are having some kind of a medical problem not same one I have because I happen to have a rare disorder but I could help other people with the emotional drama that goes along with having some kind of a medical problem that derails your life. So I put up a website called Lemonade Counseling. Like, what do you do when life gives you a lot of lemons and you have to figure out how to live your life anyway, even though it isn't the way you thought it was going to go. So I was doing that for quite a while. And then somewhere along the line, an audiologist found that web page. and contacted me and asked me if I could develop a cognitive behavioral therapy program for his tinnitus patients. And I scratched my head and thought, well, first of all, he doesn't know I happen to have tinnitus. It's not mentioned on that website, or it wasn't at the time. Second of all, I thought it was pronounced tinnitus. The audiology people generally pronounce it tinnitus. Okay then. And I had no idea if I could do what he was asking, but I said, well, let me see what I can do. So I set about creating a program and it worked very, very well. Most of the people that he sent me, his tinnitus patients, within about four to six appointments, I got them to the point where they were able to manage what was going on with them. It wasn't curing their tinnitus. It doesn't seem to work like that. But they came to a place where they could deal with it much more effectively and get on with life. So that was fine. I was doing that for a number of years. And then I happened to see, as many of your listeners probably have come across, an episode of 2020 on that. whatever that is, ABC, with a mother and a teenage daughter, couldn't be in the same room with each other because of this kid's sensitivity to sound, particularly her mother. And I watched this, and I thought, I believe that was in 2012, and I thought, that looks like it's a neurological problem, but it sure is affecting their family and their relationships, and I wonder if I can be helpful on that side of it. So I contacted my audiology person, and I asked if he knew anything about misophonia. And he said, well, he was just beginning to look into that, but why don't I call this other person? He referred me to Marsha Johnson. And at that time, Marsha was in the process of helping to put together the very first conference, I think, that ever had taken a place on the subject. It was sponsored by the American Tinnitus Association. And so she said, would you like to come? And I said, sure, I would. Well, between the time we talked and the time I went to that conference, I actually saw my first misophonia person and started figuring out what would work and so forth to be helpful. By the time I went to the actual conference, I was on the program to do a presentation. So they were all audiologists and me. And I don't know anything about audiology. I really don't understand all of the tests they do and all that. But here I was in the middle of all these audiologists and doing a presentation about how some kind of counseling might be helpful to their misophonia as well as tinnitus patients. And from there on, I ended up, working with Marcia and Cindy Simon, who's another audiologist who's in Florida. And we created the Nisiponia Association, and we've put on an annual conference or convention every year. The next coming up one will be number 12, I think. And it'll be in October this year in Phoenix in person. I'll talk about that later. But that was the path that I took. And then it just became, I worked with so many people. I've worked now with hundreds and hundreds of people with misophonia. Back to working with kids, which I thought I was done with. But lo and behold, when does misophonia usually show up? I've been working with pre-teens and young adolescents and all the way up to, I think, maybe age 70 or something like that is my oldest person that I've been working with. And so over this past, whatever that is, about a dozen or more years, I have evolved a protocol that I have found to be very helpful to people. I'll talk about that a little more later, but that's how I got to where I am.

Adeel [11:04]: Yeah. Fascinating. And that should clarify for everyone. You don't have misophonia yourself.

Unknown Speaker [11:10]: I do not. That is a perfectly great question. I do not happen to have misophonia. I have tinnitus and I also have this other. neurological condition which is a rare condition that you know as the one i mentioned i thought was going to put me out of business so i don't have misophonia and i have probably a better understanding of it than most people who don't have misophonia because of all the people that i've spent time with and i i You know, we joke that it's contagious. It isn't, of course, really contagious, but we joke it is because once you begin to get aware of how many ways that various sounds are going to affect people, even as a person without misophonia, I'm very aware of the sounds around me that would be driving somebody else crazy, even if I just find them, you know, unpleasant.

Jaellin [12:10]: Yeah.

Adeel [12:12]: Before you get into some of the patterns and the protocol, do you have an estimate of how many people you have seen or helped cope and treat their misophonia over the years?

Unknown Speaker [12:25]: That is a fair question, and I don't have a good answer. I am a terrible bookkeeper of management of details like that person. I have ADD. And I don't track things like that well at all. And I have, let's see, I think I have five of these giant file boxes in my garage of closed files. And then I have a filing cabinet in my office with hundreds more. So I never counted, but I didn't even start keeping them in one, digital file until a couple years ago so i don't know but i know it's many many many hundreds yeah okay so the hundreds not just dozens but like really many hundreds and maybe over maybe into the thousands i honestly don't know but i know it's many many hundreds from ages i think the well i know the youngest person that i consulted about was a seven-year-old No, there's actually a five-year-old, a five-year-old. I didn't work with the five-year-old or the seven-year-old directly. I worked with the parents to help them understand some things that they could do. They were a little young to be working with me, but I do work with kids as young as about 10 online. And most of the people that I see are probably around 12 to 16 but also all the way as mentioned all the way up i think the oldest person i saw was about 70.

Adeel [14:20]: Gotcha, gotcha. Yeah, no, fascinating. And, oh, yeah, so, yeah, we'll dig into some of the, yeah, maybe some of your ideas on how misophonia develops. But maybe, you know, I'm sure people listening would love to probably hear first, maybe what are some of the common things that have helped that you've found, you know, help your many hundreds of patients?

Unknown Speaker [14:44]: Well, one of the big things that helps is having a family that understands and appreciates and gets it what my first appointment always is if it's a kid my first appointment is with the parents and no no kid present kid meaning anybody that's not legally an adult 18 so the first appointment is always with the parents when i'm working with somebody who's older than that the first appointment is with if they live with somebody who's the person that they live with that they spend the most time with that they're going to be rubbing elbows with it might be a roommate or a spouse or you know a boyfriend girlfriend that's the first appointment always because i want that those other people to have an understanding of what this is as best we understand it and they're no they're not making this up and no they're not just overreacting and no they're not doing this just to you know be a melodrama queen or something no they're not this is this is something that is happening inside somebody's neurological system it would appear and when i get family members to buy into that It's a big step in the right direction. And if we have somebody whose family is often... When there's someone in the family who doesn't believe this, it's generally one parent more often... the dad, not always, who says, no, we're not going to make accommodations. The world isn't going to make accommodations. You've got to learn how to tough it out. And so, no, I'm not going to stop eating apples or whatever it is they're doing. And at that point, I will use, often I'll use a comparison. Well, I happen to have a cousin. This is true. I have a cousin who has a peanut allergy, the kind that will send her to the emergency room with anaphylactic shock. She can't breathe. She could die from it. If you had a kid with a peanut allergy like that, would you be eating peanuts around them? No, of course you wouldn't. If you did, I would say that you were engaging in some abusive behavior. Of course you wouldn't do that. So this is not an allergy. But if you think of it like that, maybe it will help you pay attention and realize that some of the things you're doing could be done differently, that would be helpful rather than harmful. So that's the first main thing that helps is getting family members on board. Getting schools on board is another thing. So most of the kids, people that I work with are in classrooms. and so getting the school to allow them you know i've written i have no idea how many hundreds of letters for 504 plans and for housing accommodations for college students and things like that once they have i think i could be working with someone for developing coping strategies and so forth over maybe a couple months and then once we get these accommodations in place A lot of them, I don't hear from them again until they're ready to move to the next from middle school to high school or from high school to college because they've managed really well. They've been able to take tests and be in the classroom, leave if they need, all that kind of stuff. So those are two biggies that have nothing to do with what I do particularly, getting the family to buy in and getting the schools to buy in. Then going back to what I do with people that I have found helpful I started with the protocol that I was using for tinnitus which is based on cognitive behavioral therapy and I found very quickly that that was not sufficient because misophonia has a lot more emotional what is known in the psychology world as dysregulation there's a lot more emotional activation and upset neurologically as well as emotionally, with misophonia than there is with tinnitus. So I began to incorporate strategies from dialectical behavior therapy dbt because those were designed specifically to address emotion dysregulation and other things but that that's one of their big big things so i did that and meanwhile i was learning a lot about the neuroscience of what's going on with misophonia and incorporating some things from that knowledge base i tell a lot of like what might be called teaching stories in part of like psychoeducation is how do you communicate something especially with kids but also with adults and a lot of things the point gets communicated better through a story or a metaphor than directly because it's a different part of the brain that's taking that information in So I use a lot of those things, stories and metaphors. I have a somewhat irreverent sense of humor. And assuming that I'm not being offensive to the person, there are times when I will say something that looks at the... It's not that any of this is funny, but there are circumstances that people end up with that if they take a step back, they can say, well, that was bizarre and laugh at whatever it was that happened. And so humor, I think, helps lighten things up a little bit at times. And then I've incorporated other things. There are a lot of other kinds of therapies. There's EMDR, which is the thing where your eyes are moving back and forth. That works. That helps in some ways. Hypnosis helps in some ways. All kinds of breathing, meditation, mindfulness sorts of things. There are many things that I have rolled into what I do.

Adeel [21:26]: Yeah, so do you know, do you have kind of maybe in your mind or maybe written down like kind of a roadmap that maybe you use or some markers that you notice to kind of like help you guide which thing to try or, you know, after having talked to hundreds of patients or is it really still kind of an experimental stage for you?

Unknown Speaker [21:53]: No, I have evolved over the time that I've been working. I've evolved a protocol and I don't do exactly the same thing every time with every person. But there are some things that I have found work well and they find and I found they work well in sequence. So one of the things that happened, I think when misophonia began to be more recognized in the media. number of therapists and coaches and people like that jumped in and said well I think I can help with that and started promoting themselves as people that treat nasophonia now maybe some of those folks are doing a good job I am aware of a number of people who've done things where they ended up making things worse and so I've had people who've come to me after they've seen someone else who in well-intentioned did things or asked them to do things that made it harder and then we have not only the misophonia issue but now we have what's called treatment trauma you know like especially with kids who've been sent from one therapist to another or one doctor to another and they're sick of doctors they just don't want anybody else trying to tell them what's wrong with them and what they should do and you know all that so I decided over time after having developed this sort of way of working with people that I know helps that I know works because I see it I mean I can they they're no longer seeing me because they're off doing their own thing and having a good life and then maybe they pop back every now and then and say I need a tune-up but but pretty much I know that what I'm doing is working and I know that what some other people are doing may or may not so after many years of working on it I actually just this week I published a training manual for mental health professionals um where i've laid out my whole protocol i have i have everything that i do in there as i'm i'm giving the whole thing away not giving it away i'm selling the book i'm putting it out there because i can't do this forever first of all um you know i've been in practice 45 years that gives you kind of like an idea of how old i am so i can't do this forever And there are too many people. During the pandemic, I had a huge waiting list. I never had a waiting list in my practice until the pandemic. People were trapped in the house with these awful folks who were making horrible sounds they can't stand and driving them crazy. And all of a sudden, I had a four-month waiting list. Why four months? And precisely, almost precisely four months? Because within four months of working with somebody, I get them to the point where they can be off on their own without me, and I can put somebody else in that time slot. So I had a sort of revolving door. That's why I've had hundreds and hundreds and hundreds of people. I don't keep them for years, usually. Sometimes I do. I have some people that I've seen for a very long time because now we're on to other issues of their life, too.

Adeel [25:18]: Yeah, and no, it's great that, yeah, I wanted to mention that book. I think sensitive2sound.com slash training, and I'll have links in the show notes of where the book is.

Unknown Speaker [25:28]: Exactly. Thank you very much for that. And it just went live Monday.

Adeel [25:34]: Oh, okay.

Unknown Speaker [25:35]: What's today, Wednesday? Wednesday. Maybe it was last Monday. But anyway, it just went live. So it's available. It's intended for mental health professionals. I'm imagining there will be some people who don't fall in that category who are going to think that it'll be something they can use. And just caveat, the reason I'm targeting it to people who have a background in mental health is that there are things that come up, I'm sure you've heard this you know this it comes from anybody's personal history there are things that come up that have to do with things that fall much more into the realm of psychotherapy than in the realm of like coaching or something like that there are things that come up that have to do with people's family history with emotional trauma that happened when I have a person whose misophonia symptoms started not accidentally, but coincidentally happened around the same time as an extremely traumatic thing happened in this person's life. And the family never put two and two together. Well, they actually didn't know about the traumatic event until much later. But when those kinds of things... are unfolded, you really need to have somebody who's adept at psychological interventions and knowledge and awareness to be involved. That's why I did not write this book for the public. The book that you and Jane worked on so diligently is more of a self-help process. And I bought that book when she first published it, and I think she did a great job. It's wonderful. She slash with you. And I think it's a really good self-help sort of program. And there are some things that You really need to have somebody else help with because there are things that go beyond the mechanics of how to do this or do that to get through this particular stressful mesophonic experience at this moment. There are things that go much farther and deeper. And that's why I'm targeting mental health professionals. I want them to know what to do so that they don't do any harm.

Adeel [28:17]: Yeah, I'm glad you mentioned that because, yeah, I mean, a lot of the conversation about misophonic treatment tends to start at the onset of misophonia and then how to treat it. But it's maddening to me that in 2025, we're still not looking back into family history, traumatic events, what you've mentioned, like coincidental environments at the home or... or wherever in the person's life, because anyone who's listening to the podcast hears those stories all the time. And it really doesn't take a rocket science, I don't think, for somebody who's actually listening to put two and two together. Would you like to talk a little bit about that? You were talking about that at your talk at the convention about ACEs, adverse childhood experiences. Yeah, I'd love to spend time talking about that, especially with someone who's seen so many cases as you have.

Unknown Speaker [29:21]: Well, for one thing, let me thank you for asking that. For one thing, this issue, because it's something to do with sound. Initially, everybody thought it was an audiology problem. And so the audiologists were the first ones that were involved in identifying this issue and doing something about it. Marsha and the Jastrowoffs named it. Unfortunate name, but it came up with this cute name that stuck, musophonia, even though it's not literally useful. But over time, I think it's become more recognizable through the research that's being done that this is more likely neurological at its core. But why? Was somebody born prone to this? Maybe. But then it looks like all of a sudden it just shows up. I don't know if this is true for everybody. For lots of people, all of a sudden they scream at somebody at the dinner table to shut up or stop chewing so loud or whatever. It's like a switch gets flipped somehow. And there's no explanation as to why that occurs. So I'm interested in kind of the field of epigenetics. There's the genetic part, which is maybe somebody is wired to have a tendency towards something. But then life circumstances somehow cause that switch, if you think of it that way, to be flipped, to be turned on. And so ACEs, Adverse Childhood Experiences, this was a giant study. There were 17,000 people in this study. It was done in the late 1990s. by the Center for Disease Control, the CDC, in conjunction with Kaiser HMO in San Diego. So Kaiser's a huge medical company, right? And most of the people who are members of Kaiser and people that were in this particular study at that time were Middle class, upper middle class, I think mainly white. I'm not positive about that. But they were educated people who have health insurance. They have finances. They're not poverty people. They're not living in poverty. in starvation or anything like that. These are just regular ordinary folks. And when they ask them, they, they came with 10 questions of the, did this ever happen before you turned 18? And there were five of the things in, in the ACEs questionnaire are personal experiences, you know, like was somebody abusive to you in this way or that way? And five of them were more environmental. Like did somebody in your family go to jail or, Or you were abandoned in some way or neglected or was someone in your family violent towards your mother? There are five questions personal and five more family environment. And what they came up with was out of these 17,000 people that were in this study, a vast, immense number of them, I don't have that in front of me right now, but a huge number of them had at least one of these adverse childhood experiences. And of those who had one, most of them had more. The 87%, I think, had more than one. So if you're looking at people who grew up in a more privileged environment and they had bad things happen in their childhood that affected their lives, it's probably far worse than that in some other environment. But the thing that was most telling was they tracked these people. They were asking these people questions who were coming to Kaiser for adult medical issues. And that's the part that's most glaring about this. This stuff that happened when you were 5 or 10 years old or whatever now is showing up in your adult life as a problem with medical issues, health issues. but also emotional and behavioral issues that are occurring far later on. And so what's the connection? Perhaps a big connection is that things that happen to us when we're little or young are going to have that kind of an impact. And the research is showing that those kinds of events They don't change our genes. Our genes are what we're born with. But what they change is how those genes are expressed, how they're affected. And that's the field of epigenetics. They found, there's been some studies that have found that third generation Holocaust survivors, so not the person who survived the Holocaust, not even their generation, children but they're children's children have symptoms of things that are reflective of experiences that happened to somebody they never even met you know a a grandparent or great grandparent they didn't even know this person and yet there are symptoms that are showing up in their life that are reflective of things that happened to that other person that they never even knew so it's like there's something in the genetic transfer of trauma that is generational transgenerational so again why it's important for someone who understands that someone who knows a little more about family systems and about trauma treatment to be involved in working with something as complicated as misophonia not just strategies do this do that right no that's fascinating thanks for explaining that

Adeel [35:51]: Yeah, I mean, a lot of the people come on here on the podcast, they've had, you know, maybe an alcoholism in their family. You know, they've, you know, as a child, they were afraid of, like, what mood other people were in. You know, there was potentially some abuse, definitely temperance flaring, maybe a death in the family, you know, at a certain time causing an issue. Obviously, things that happen in childhood don't necessarily always translate to issues later on. What do you think are maybe some of the factors there that have the epigenetics turn on for one person and not another?

Unknown Speaker [36:38]: Well, it probably has something to do with... the genetics so somebody may be more resilient genetically somebody may have had an earlier intervention that was able to help stabilize them in some way there's been there been lots of situations where let's say some not talking about misophonia specifically but where somebody gets survives a neighborhood that's full of drugs and violence and gangs and all that and they make some wonderful stuff out of their life you know they end up going to college or getting meaningful work and they may be making more money than all the rest of us combined because they're a hero in some sport or in the entertainment industry or something like that. And when they are asked by some interviewer, how do you account for this? Why is it that all of the kids in your neighborhood are dead because they they were in gangs or they're in jail or whatever how do you account for your not being in that in that pit and they virtually always say well there was this one person there was my grandma there was my coach there was my pastor there was one person who believed in them and who who expected more of them and who was there for them that gave them a layer of protectiveness and resilience that maybe somebody else didn't have. Why is it that somebody else doesn't have it? I'm not putting blame on anyone. Sometimes there's an overt cause where you could blame somebody. You could say, well, that horrible person did this awful thing to this child. But a lot of times it isn't that. It's more like... the family was under extreme stress because of something unavoidable. They, you know, like right now in Los Angeles, their house burned down and every single thing they own and everything they know has been lost completely. I mean, that generation of kids is going to have some difficulties that are definitely going to need help to get through. There are things that happen that are beyond our control it's not like we anybody did it on purpose so example of that might be so maybe you're sitting at the table and your family is upset about something that has nothing to do with you as a kid financial somebody lost a job or maybe you know grandma is sick and is going into the hospital or whatever it might be that has nothing to do with you And yet there's a lot of tension at the table and stress. And you can feel that. You're a kid. You pick up all those vibes. And oh, by the way, somebody at the table is chewing with their mouth open while they're talking to discuss all of this stuff that's going on. And all of a sudden, your system is just tipped over the top and, you know, just can't take it anymore. And you scream. And from there on, you begin to build up a layer of repeated incidences that keep reinforcing how awful this is for you you know of course at the beginning of something like that uh especially for people before this thing had a name and it got named around 2001 before it had a name so any of the adults who have misophonia they had no resources at all you know you're just being manipulative and bratty and obnoxious and you can't scream at your mother like that and whatever and so now they have the problem of misophonia and they have the problem of nobody's believing them and being supportive to them that they can't help their reaction so it it's very complicated and and i i think that the more we understand about the dynamics of families and interpersonal relationships and how trauma develops and why would it be with one person and not another maybe because of some kind of resilience maybe because of some early intervention of some sort maybe some validation some some need was met to come comfort that child on a deeper level right and and that may be Not even a family member. It's possible that that's somebody outside of the house. Or it might be somebody that's in the house, but it might not be.

Adeel [41:38]: Yeah, I think this is a super important issue because, you know, we see that so often in people who, you know, who have misophonia. If you really talk to them and hear about their stories. But it's such a sensitive issue, as I'm sure you know, because all these parents are concerned about their children. They're bringing them into your office. There is... um you know unless unless you discuss it that right way it often gets interpreted as parent blaming and i think that's kind of like push like it's kind of pulling um i don't know it's i think it's um it's it's it's it's not helping the kind of investment of misophonia treatment if people are too worried about stepping on other people's toes and parent blaming. I think there needs to be a more nuanced discussion that kind of explains these things the way you just did.

Unknown Speaker [42:34]: Well, you're absolutely right. right on in some of the, I've done presentations for the Smithsonian Convention and various other, lots of other places for including, I did two in London and one in Warsaw this past year. But anyway, one of the points that I make is the very thing you're talking about is no parent, unless they're like extremely mentally ill, but let's just say an ordinary parent does not get up in the morning, look in the mirror and say, you know, what can I do to mess up my kids today? Nobody does that. You want to do the best for your kids. And generally speaking, we do. We do a pretty good job. There's research on parenting that says we don't have to be perfect. In fact, trying to be perfect is probably one of the harmful ways of trying to raise children because then they think they have to be perfect and that's not possible and we know that from all evidence or indications people with misophonia are extremely perfectionistic almost always they've got like a very high standard for how they think they should be and what they think they ought to be able to do and Then there's the judgment piece that goes with that of what they think everybody else should be too. But in the midst of all of that, parents don't intentionally do things to damage their kids. But the research says if we... make amends and repair the damage you know apologize for blowing up at a kid because you know I came home from work and I had a bad day at work and then I got mad at my kid or my spouse or the dog whatever there's a level of being able to repair that that's actually better than trying to be perfect in the first place because then what we teach kids is nobody's perfect and it is possible to repair damage almost always I mean there's the only time you absolutely cannot repair something is if somebody's dead so you don't want you don't want somebody to die for you to realize that you screwed up but Yeah, it is a very delicate balance to say to someone, to a parent, I mean, the extreme way of saying it, which I would never, ever do, is, you know, what did you do to mess your kid up? Look what you did. You screwed up and look at this.

Adeel [45:29]: That's the irreverent way of asking.

Unknown Speaker [45:31]: Yeah. I mean, I would never say that. And I don't believe it either. But I do know that things that people do inadvertently are going to affect the people around them, you know. especially their kids, because kids don't have a filter. Kids don't have enough life experience to be able to take a step back and say, I mean, as an adult, if somebody dumps on me, I could take a step back from that and say to myself, Did I actually do that thing they're yelling at me about? Did I actually say or do something wrong? If I did, I need to fix that. I need to apologize. I need to redo it or whatever. If I didn't do that, I mean, I take a good hard look. And if I didn't, then I can say, this is not about me. This is about them. They're having a bad day and they're taking it out on me. And then I don't have to take it on personally. But that requires, this is another big piece of why therapy ought to be involved here, is parents need to have their own strong self-understanding, self-awareness, and ability to manage their own reactivity. You have to be able... to be the grown up in the situation, to be able to stop yourself from completely blowing up or apologize and make amends if you did do something.

Adeel [47:08]: Are you finding that you're, while you're doing that, that you're then uncovering layers in the parent? Perhaps their outbursts are representative of something that's coming from their childhood, something that's kind of evolved in them. I'm curious if you see that a lot.

Unknown Speaker [47:27]: For sure. The first appointment that I have, which I mentioned is with the parents only, I draw what is called a genogram. It's like a family tree. And I just make a sketch and I ask them, you know, so who are the kids in the family and the parents? I go back three generations. And what I'm looking for are any kind of patterns. I mean, these things are passed along genetically as well as epigenetically. So one way of thinking about this is... until I read a book that mentioned it specifically like this, I hadn't really thought it through like this. My mother, who gave birth to me, I came from eggs that were in her body from the time she was born. And she came from her mother whose eggs were in her body from the time she was born. And this goes back and back and back. I mean, we are connected genetically through many generations back to eons. So we are definitely affected by things that happened. in our family's history. Lots of people know that, you know, the first time they scream at their child, they realize that it's almost like their mother's voice was coming out of their mouth. They go, where did that come from? Oh my God, I sound like my mother. We repeat patterns. And if we can recognize that, I mean, I think parents need a lot of help when they're trying to deal with a child who's difficult for any reason special needs kind of child in any form puts a lot of pressure on families and if if you yourself haven't got your act together if you haven't done your own emotional homework had your own therapy worked through your own family life history issues whatever it is it's harder to be a parent coming from a clean slate because there isn't a clean slate. So I think it's important for, as time goes on, the more we know about any condition, misophonia just being one of millions, that there are things that we pass along emotionally and biologically, and there are some things we can't. do anything about. They just are what they are. But there are things that we could do differently. We could change. People break longstanding bad patterns. You know, somebody who was raised by an abusive parent does not have to become an abusive parent. Right. They can change that.

Adeel [50:26]: Yeah, exactly. Um, yeah, no, I wish this message got out more. Um, and, uh, yeah, cause I think that's, that's really important. Not, I think, yeah, not a lot, a lot of people are on, you know, Facebook and the Reddit groups and they're looking for that quick fix, quick explanation, but, um, you know, they're not really going back and digging deep. Are you finding that, apart from the CBT work and some of the other things that you've done, that addressing, maybe just acknowledging some of these coincidental situations has directly affected people's misophonia in a therapeutic way?

Unknown Speaker [51:07]: Well, the more we understand of... what something is i mean the first experience people generally have with misophonia is they discover that it has a name you know they they go online and they discover that these things that are happening to them is a thing It's a real thing. And there's a tremendous relief in that recognition. I'm not just crazy. There's actually something here. There's something. So that's the first piece of making a difference and healing and transforming what's happening is to know that there's actually a thing happening here. The more we know about it, The more we can understand about what actually is happening, where is this coming from, the more power we'll have and control we'll have over changing direction. Sometimes just a bit of that is enough to make a difference for people. So I've evolved over time a lot of different exercises, I guess we could call them. that help people learn how to deal with this, strategies that assist them in a lot of different ways. And at some point it begins to click. And it's like, oh, I'm having a reaction to that sound. I hate that sound. And I don't need to do anything else about it. I just, I mean, I'm not going to stay stuck on that sound. I'm going to take my attention elsewhere. And I have a bunch of exercises that kind of train you know, train the brain how to do that. And then things change. Because when you're fixated on a problem, it's all you see. It's just, it looms tremendously. It's huge. And I'm not saying you shouldn't be fixated on this particular problem when you know that it's a real thing. Of course, you're going to look into everything you can about it. You're going to be online and all these groups and whatever. I recommend to people, by the way, that after you get a kind of an official diagnosis and you've been online and researching and all that, at some point, stop it. Because what happens, especially on groups like Reddit or other places like that, is that People are going there to vent. They're complaining. They need a shoulder or an ear. And so you go there and what you're going to hear is everybody's problem. Generally, you're not hearing as much from people who have figured out what to do about this because they don't keep putting themselves in that. uh arena where they keep getting assaulted by everybody else's problems so they start backing out and not going there anymore so the people who are left are the ones who are still unhappy inventing

Jaellin [54:08]: Right.

Unknown Speaker [54:09]: And we know that people with misophonia have this very interesting tendency to, the contagion part of it, you know, like somebody says, oh, this thing that my father did, whatever, and the person says, gee, I never noticed that. And then, of course, all of a sudden they notice that and it's added to their list.

Adeel [54:26]: Right, right, right, right. yeah no yeah i'm no that's that's exactly the kind of cycle people find out his name and do all this research um and then they you know they tend to find other people and then they may or may not tell their family um and you know that can go any any you know many different ways um yeah you know i'm um you know it's curious uh if i you know the reason why i asked was just curious if like maybe addressing some of those family issues has ever kind of like been one of the you know is it part of your protocol to kind of maybe address the past issue with a with a parent um because you say you know you bring in the parent right away is that kind of directly um led to kind of real misophonia uh relief Because, you know, you're obviously online, you're hearing about, you know, these various stories of, you know, hypnotherapy and whatnot, addressing deeper trauma. I'm curious if kind of part of your protocol has been to kind of resolve those childhood issues in a way that has kind of like led to relief.

Unknown Speaker [55:35]: Yes, the short answer would be yes. Longer answer would be no. We need more education, psychoeducation. We need more knowledge and information out there so that people have a better understanding of, you know, where do these things come from and what can they do about it. And not blame, like one of the pieces that you and I were talking about after one of my presentations at the convention. is this aspect of religion, for example.

Adeel [56:06]: I wanted to get to that.

Unknown Speaker [56:09]: You know, I mean, many of the things that I am interested in that I come up with as areas that I would like further research and exploration comes from people in my practice who say to me, you know, I've been thinking about this. What do you think? And this particular incident had to do with, you know, somebody who was raised in a very strict... religious environment. And he was wondering if various things from his upbringing had something to do with him developing misophonia. And as I explored that, and I did some not as official study, which I'd like somebody to do, I did just a survey. I was astounded at the disproportionate number of people. who came from a family with a very strict um perspective on religion basically meaning what's right and what's wrong and if it's wrong then it's evil and bad and sinful and you know go to hell yeah and a lot of shame and a lot of guilt that go along with all that and i'm not intending to be disrespectful to anybody's religion At the same time, when I look at this disproportion, then I came up with in this non-official study. I mean, it was a study survey. I say there's something to this, that the way that people's families operate and they operate this way because it's what they do. It's what they know. It's what they grew up with. It's not out of any ill intention ever. But whatever it is that they're doing, if it turns out that some of those things are contributing to the problem, then maybe it's something to consider and look at and figure out if there are ways to do it differently. The religion thing is like, that's a tough subject to breach, along with parenting styles and things like that. It's like, I want to raise the question, and I also don't want to be... blaming or disrespectful because I'm not. I'm looking at are there any connections here that we could maybe look at and disconnect. Maybe we could unhook this thing from that thing and maybe make somebody's life a little easier by doing that. A little quick example of how that might operate is when I'm working with, let's say with a 14-year-old or something. One of the things that might happen in their family, and I want their parents to be prepared for this, is it might look like they're getting worse while they're working with me. It isn't that they're getting worse. It's that they're getting more able to express more directly. what it is that they're experiencing. So they've been maybe burying it, suppressing it, not telling their parents everything that's going on for all sorts of reasons. They try to be protective of their parents. They think they'll get in trouble. More often it's because they're trying to protect their parents. And so they don't tell them. uh what's going on they'll say to me you know all my parents know about these four things you know that i have trouble with but if i told them all the things that triggered me they wouldn't be able to handle it so i don't tell them well that leaves this young person extremely burdened with carrying all of this themselves and nowhere to turn for support. So I say to the parents, it might look initially like they're getting worse because they start being more expressive. And actually you have to look at it as maybe this is not worse, it's better. It's like they're beginning to process this stuff and they're hopefully going to be able to trust that their family won't be criticizing them for being able to express themselves. And they often grow up in a family where, you know, expressing emotions and that sort of thing isn't part of the family lexicon. You know, we just don't do that. We don't talk about those things. So sometimes, I mean, it's just not a problem that belongs to a person. It's a family issue. It got created in a family, not because anybody intended it, but it's there in the family affects everybody in the family. I should mention, by the way, that, that first appointment is parents, but later on, um, I will do a piece of an appointment with the siblings to make sure that they understand what, what's going on. And that, you know, when, when kids say, well, my sister does this thing on purpose, it may be true. It, it may be that that sister has found a way to get you. And, um, If that's true, then I would like that sister to have more awareness and be able to change behavior so that they're not adding to the problem.

Adeel [61:22]: And this kind of, I don't know, when I hear this and also when you were talking earlier about the, you know, the resilience piece that, you know, a lot of kids can, in similar situations, can kind of learn and potentially be productive members of society. It kind of goes to, you know, I think about the, you know, the saying on your website about lemonade, you know, turning lemon into lemon. I often think about, obviously, misophonia is, you know, has all the traits of a syndrome or disorder, but you can almost think of it as a way to kind of, I don't know, use it as a positive way to kind of, if it can kind of like...

Unknown Speaker [62:06]: if it can kind of like you know just like open up you know these family issues that are not misophonia and kind of help those i mean that's a great thing that and yes that's a good point um i i don't i'm thinking about it i don't think i've directly addressed that in in this book uh it's sort of a byproduct but one of the things that i do address directly Not at the beginning. When I first start to work with somebody, I am definitely not going to say, let's look at the things that are advantages of having misophonia because that feels very dismissive. But when they can get to the point of understanding better what's happening and having, you know, personal management over their reactivity and so forth. Then we can start looking at, you know, what are the superpowers that go along with this? What are the things that you do or can do that you just they come naturally to you and you don't even realize that they don't come naturally to other people. So let's look at what some of those are and how you can find ways to capitalize on that and use those things to your advantage. This is particularly true with. occupations there there are some kinds of work fields of of endeavor where a person who has misophonia could do a far better job than somebody else because along with having this super sensitivity their brain also works in a lot of other you know it's a neurodivergence it's not a problem a disorder in that sense of saying well you know what you have a very extreme ability to attend to details you notice little things that are out of place where does that fit in the work world well there are lots of places you know somebody who does computer coding has to be able to notice that that comma is in the wrong place or got left out or something i mean you have to be able to notice little details to do that you have to have very high attention to to logic and sequence and patterns and, you know, in some cases to be able to hear things, but more often to be able just to attend to things that other people don't notice. And that can make you a valuable person in any number of different occupations. So look at that side of it. get to the point where you can you know have better management over the parts of it that are that are problems right look at the parts that are assets could be assets

Adeel [64:56]: Yeah, and I feel like, you know, we could go on this and many other topics. I do feel like, yeah, like you said, I think, you know, well, people with misophonia, and everyone has kind of special talents, sensitivities, traits, what have you. I feel like, I don't know, sometimes I think, you know, last couple hundred years, we're kind of made to conform to, like, sitting in a room for school for 12 years and then taking a job, whatever we can get, and kind of sitting in an office for a long time. I feel like... I don't know, this, our modern kind of sensibilities have kind of maybe affected what, you know, how, you know, what, what develops in us, because maybe we were, we were not meant to sit in an office and, you know, listen to weird people slurping. Maybe we're meant to use our, use our talents in more natural ways.

Unknown Speaker [65:48]: well that yeah absolutely also i mean there are a lot of before i was in the therapy field i was a teacher i was a special ed teacher and for a while so i was working with kids whose learning style was different they they couldn't read i had i had a whole room full of fifth graders who were in this particular school in this particular neighborhood they couldn't read they were reading at first grade level and And I look at that as a failure of the school system, not as a failure of the kid. Because the way that the people had approached teaching reading didn't match the learning style for those particular kids. And yet I was supposed to give them standardized tests for fifth grade. They couldn't read the damn thing. So I got subversive about that. I said, just pick one column. A, B, C, D. Pick B. Pick C. Pick one column. Just go down and mark it. Every one of them down like that, and you're done with the test. I wasn't supposed to do that, of course. But they couldn't read anyway. They didn't know what they were guessing anyway. And by doing it that way, they got 25% of the money or something. And then we could just get on with... teaching and learning and not have to spend all our time test preparation.

Adeel [67:19]: fascinating um yeah just to bring you know we're just over an hour this has been obviously we can go on and on but um you know just to bring it back to mississippi a little bit and and also just you know about the uh um the the social aspect of it you know that the next phase after like learning about it researching is meeting other people do you want to talk a little bit i guess about the the convention oh yeah absolutely so we started doing these conventions and

Unknown Speaker [67:47]: If you talk about it with someone who has misophonia, their first reaction almost always is, why in the world would I want to do that? Why would I want to go and put myself in a room full of people who do all those things that I hate? I mean, that would just be torture. That's stupid. Why would I do that? Well, we have very strict rules about what happens in the room. There's no food or drink allowed. We ask people to leave the room if they need to, you know, cough or whatever. We provide snacks that are not crunchy. We spend a lot of time making sure that the environment is supportive. We pick hotels that have water ambience in the lobby so you can sit near a waterfall and have a conversation with someone. We set it up like that so that the environment is great. But the best part about it is meeting other people. So we have... parents who get to meet other parents and you know don't have to explain to somebody about the problem they're having at home because this person gets it they understand it we have a teen track so the kids get to meet other kids that are experiencing similar things and they create a very good support network for each other they end up with a group of buddies on Discord or whatever platform they're using. They communicate with each other after the convention. There are presentations about various topics so people can learn something if they want to, you know, sit there in the room and listen to whatever it is. But there are discussion groups and informal activities. And most people go away from this, from the convention saying, this was really good. I'm glad I did this and I'm glad I brought my kid. And my kid is glad to have been here.

Adeel [69:44]: Yeah, I see a lot of families and you're right. It's, you know, apart from all the work you guys put into making it supportive, which is very visible and you can definitely see and feel that. It's the, like you said, the informal happy hours, bumping into people, having a conversation. Like you said, intuitively understanding them because we've had similar experiences is very eye-opening and validating and just kind of, you know, fulfilling. So...

Unknown Speaker [70:14]: One other aspect of that, by the way, speaking of the validating part, is some people tell me afterward, it's the first time the shoe's been on the other foot. All of a sudden, if I'm a person with misophonia, I'm very well aware that that thing that other people do, the way they drink or breathe or eat or whatever it is they do, that drives me crazy. And all of a sudden, I'm in an environment where I have to watch what I'm doing, because I could be setting somebody else off. Imagine that. And it kind of gives them a better appreciation for what their families have to do in order to be accommodating to them. Because most people with misophonia, not all, but most, don't have a problem with their own Those similar sounds that other people make drive them nuts, but they don't have a problem with themselves eating something that's crunchy or whatever. But here they are in a situation where they have to be aware of someone else and not triggering someone else. And it's very eye-opening and helpful, I think, to them when they go back home. They have a little better appreciation of what their families are trying to do to be accommodating and helpful to them.

Adeel [71:34]: Yeah, no, I agree. Not that we're not empathetic, we're extra empathetic. But yeah, that kind of like understanding is super valuable. Because yeah, you're right. I mean, when we're triggered, we're not thinking about anything else but ourselves. And so that's the one moment where we're not super empathetic. And so this is a great experience. Well, yeah, Jolene, this has been amazing. We didn't even touch on mesokinesia and other things that we could definitely get into. But yeah, I'd love to have you on again in the future, I guess. That would be amazing. Anything else you want to share with people? Maybe some final tips for parents or stuff like that?

Unknown Speaker [72:20]: Well, if we had one of the thoughts I had before we started talking was, you know, doing a couple of different exercises sort of with you, which we are, you know, we're way over. So we'll do that.

Adeel [72:35]: We'll schedule one of those for sure.

Unknown Speaker [72:37]: Yes. I can do some of the things with you that I that I do so that people can see how this works. But I will tell you one very quick one right now in closing that I teach. everybody, parents and kids, from the get-go. It's a DBT-informed exercise, which is a way of breathing. Probably you've run into this, and other people have run into this. There are many different breath techniques. This particular one calms down that agitation very quickly. It counters the adrenaline reaction. I mean, when you hear the sounds that set you off, it's an instant reaction. You don't stop and think. It's like knee-jerk adrenaline rush this particular style of breathing and what it is is you exhale more than you inhale so when i teach it to people i say okay let's do this together we're going to inhale while i count to five we're going to exhale while i count to seven do that several times during the day it begins to calm down your system it chemically in the brain it changes the ratio of oxygen and carbon dioxide the brain it automatically shifts the brain out of the fight flight sympathetic nervous system into the calm down parasympathetic system it happens very quickly when i do it with kids i call it magic breath i mean it works really it's it's simple fast works really well to calm down reactivity so people can you know if you practice it many times during the day connect it to something you already do often during the day, like every time you pick up your phone, oh yeah, take a breath where I exhale more than I inhale. It'll begin to be more automatic and it'll keep your system calmer and you can jump right in and do that when you're in a triggering situation and it'll help calm your system down. So that one is like just so fast and easy to do.

Adeel [74:40]: Yeah. That's a great tip. That's a great tip. Um, and, and yeah, you mentioned, I guess the, the convention coming up, I guess I knew it's going to be in Phoenix. Is this going to be in October?

Unknown Speaker [74:52]: It's going to be in Phoenix. It's October, uh, 16 to 18.

Jaellin [74:57]: Okay.

Unknown Speaker [74:57]: We start Thursday night gathering and then Friday and Saturday all day will be the actual event. And we're going to do lots of, lots of time for interaction and, um, you know, different breakout groups where people have a chance to meet and talk with each other as well as presentations. And we don't have a lineup yet of presenters. If somebody knows somebody that they think we want to have this person come, I'd like to know more about that. Let us know so that we can contact them and see if we can get them on the program.

Adeel [75:32]: Great. Well, yeah, again, Jolene, amazing. We'll start scheduling this next session soon. I think it's going to help a lot of people. People will be looking forward to chatting again. I'll have a link to sensitive2sound.com slash training in the show notes. But yeah, thanks. Thanks so much.

Unknown Speaker [75:52]: Thank you very, very much. I appreciate the time that you've taken to do this. And you ask really good questions. And I really appreciate the opportunity to talk with you.

Adeel [76:02]: Thanks again, Jolene. Absolutely an instant classic episode here. Can't wait to have you on again. Remember, her brand new book for clinicians is available at sensitivetosound.com slash training. 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 helloatmissiphoneypodcast.com or go to the website, missiphoneypodcast.com. It's even easier just to send a message. Reach me on Instagram at missiphoneypodcast. Follow there or Facebook at missiphoneypodcast. And on Twitter or Acts, I should say, it's Missiphoney Show. Support the show by visiting the Patreon at patreon.com slash MrFunnyPodcast. The music, as always, is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [77:18]: you