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Episode 7 with Callie Ginapp
145 Plays1 year ago
We are joined by the amazing Callie Ginapp, who is a resident in psychiatry at the Beth Israel Center, to talk about the things that are important to ADHD people, but don't make it into the criteria.
Callie is @callieginapp at Twitter and bsky
Paper is here: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0292721
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Transcript
Podcast Comeback and Plans
00:00:07
Speaker
Hello. Hello. Welcome back. We are back, back, back. The ADHD Science Podcast rouses from its slumber of about six months. Welcome. It has been a while. There's lots of reasons why. We've been quite busy. You've been quite busy. I haven't. Oh, well, yes, I was. Guys, I've been quite busy. Nothing secret, just kind of A levels and having a job and stuff like that. Yes, and stuff like that.
00:00:37
Speaker
So we're going to talk, we've got six episodes lined up for you, all going to plan. So it'll be a six episode season. The big zero six. Yes, I don't know what the zero is doing there, but that's fine. Just six. And then we'll see how it goes next year. It all, it slightly depends on your work and my work and all of that stuff.
Guest Introduction: Callie Gynapp
00:00:58
Speaker
But the first person we're going to talk to is Kelly Gynapp. Yes. I think I pronounced her surname.
00:01:07
Speaker
Correctly. I apologize, Callie, if I have not. Callie is a psychiatrist, basically. She's affiliated to Harvard and she works at the Beth Israel Center.
Rethinking ADHD Diagnostic Criteria
00:01:20
Speaker
And she's talking about what actually is, what's really interesting is we're an ADHD science podcast and the first episode of our second season is basically undermining ADHD in a way.
00:01:32
Speaker
I don't know if that's how I'd phrase it. I think it's less undermining ADHD and more undermining the classification, classification of ADHD itself. I think that's right. It's questioning the diagnostic criteria. And I think if you think about the history of ADHD, we've
00:01:50
Speaker
it emerged as a pattern of observed behaviour and now it's become seen as a way of your brain to be. So the experience of ADHD, which was never considered when it was actually developed as a condition, is now coming to the fore. And so what Callie's work does is bring that almost like the chat
00:02:18
Speaker
and the sorts of things that are said within the community and put that into an academic paper and in an academic framework. Yes, that is, I don't know what else to add to that. Uh-huh, yeah. Sorry, but do you think, but so what, I mean, she talked, because she talked about emotions much more than the kind of... Oh yeah, totally. I don't know. I only just woke up, man. But that's, yeah, I promise I'm better in the episode.
00:02:46
Speaker
You're very good in the episode and as is Callie and I am... Oh absolutely, Callie's great. I am okay. You're slightly below average. So let's listen to Callie! Callie! Right, welcome Callie, but thank you very much for coming on the ADHD Science Podcast. How are you doing? Hi there, I'm doing fine. Thank you so much for having me.
00:03:11
Speaker
No worries at all. So we'll jump straight into our first question about your fascinating research.
Exploring ADHD Symptoms through Community Insights
00:03:18
Speaker
Tess, if you can take it away. I absolutely will take it away. So in your research, what question were you answering? Yeah. So this paper was set out to answer, what is the full breadth of symptoms that people with ADHD have, specifically young adults with ADHD?
00:03:33
Speaker
really looking at beyond what we typically think of just attention deficit or just hyperactivity, trying to get the full scope of symptoms that people experience. And we did that by asking people with ADHD what symptoms they experience.
00:03:52
Speaker
So it's a very self-report basis then. Yeah, it was a series of qualitative focus groups, so it was groups of between three to six people. It was all done remotely, so people could be from any country.
00:04:07
Speaker
Um, and asking them, you know, a series of questions that start, you know, to start the conversation, but really letting the conversation flow, um, in whatever direction it might take. Um, and asking people, you know, a few targeted questions on symptoms that I went into thinking that based off my own experience, having ADHD and, um, having done research in the field before, um,
00:04:33
Speaker
things that had come to my attention as symptoms that are not currently really captured by the medical community that people with ADHD say they experience all the time, but you're not going to find a paper on it. And that was kind of the, what this paper set out to do is bring what people are talking about in ADHD communities into like the formal scientific literature.
00:04:57
Speaker
I think that's, I think that is a very overdue topic. And it's very something very important that you're looking at there. Because there is a lot of things that people like talk about a lot of common symptoms that pop up across like online discussions. But no one really tends to take seriously, but a lot of people tend to agree on what do you think about that?
00:05:16
Speaker
Yeah, I mean, that's definitely, well, that's the thing that sort of turned me onto the paper myself, because it very much fits with my own experience and also the experience of, my own experience as a person with ADHD, but also my experience as a clinician looking after people with ADHD. You know, they talk about all sorts of things that aren't anywhere near the diagnostic criteria. So yes, that's the background that we all have this experience. And how do we, how do we turn that
00:05:40
Speaker
lived experience into something which is more scientific, which is exactly what you're doing in your paper. So before we go on to your findings, because some people might have their skepticism activated by a paper like this. Because who did you choose? Who did you talk to? Who did you choose? And how do you make sure that you weren't importing
00:06:03
Speaker
finding what you wanted to find in a sense. I'm not saying you did, but just how did you make sure that that's not what happened? No, thank you. So for recruitment, recruited people from online communities for adults with ADHD. A lot of people came from Facebook. This was just me putting posts into
00:06:24
Speaker
groups for people with ADHD. Most people came from Facebook also, and some from Reddit. It was pretty unsuccessful with my Twitter recruitment. And then also partnered with the children and adults of the ADHD or CHAD advocacy group.
00:06:43
Speaker
who posted the study on their platform. Yes, most definitely. So that's the people who were involved in some sort of community for people with ADHD. So that definitely does prime this study to be for people who
00:07:00
Speaker
have already had these conversations and already had these thoughts and already been primed with these ideas in these online communities, which some people might say is a problem with the study. I think of it as these are things that these communities are talking about and it's important to know that. And so it wasn't a random sample.
00:07:23
Speaker
No, exactly. So you're not really aiming for a representative sample of everybody who has ADHD in the population. Well, ultimately, I was actually I was just thinking about that, you know, lots of people with ADHD in the population are even diagnosed. So if you want, if you try to get you only get ever going to get a representative sample of those who've managed to get a diagnosis.
00:07:41
Speaker
Right. And this was people who had a diagnosis, um, really, um, and we, um, with like, either if they had documentation or if I could like call their primary physician or something like that. Um, some people I weren't, I wasn't able to verify their diagnosis because sometimes, um, and we're all guilty of this. It's very hard for offices to get back to every random person that calls. Um, but that, um, but everyone said that they had a formal diagnosis of ADHD and is able to verify diagnosis in the vast majority of
00:08:13
Speaker
And the second part of the question, how did you ensure that the conversation that you went in, I mean, when you went in to do these conversations, how did you make yourself a bit more of a blank slate?
Data Analysis and Key Findings
00:08:23
Speaker
I mean, it's just almost a clinical question. It's almost a kind of question, you know, how do you, how do you do that?
00:08:29
Speaker
Right, it's tricky. It definitely, I went in with a preset discussion guide and stuck to literally reading out that question, you know, when it came, the questions went in different orders based off when how the conversation was flowing.
00:08:45
Speaker
but read the same questions to every group to have a little bit more general consistency in that, right? And then also really let, actually the most difficult part was interrupting people at some point to move on to the next topic because people really just were bouncing up, unsurprisingly, bouncing off each other and going in a lot of different directions. And so when analyzing the data, used an inductive approach
00:09:14
Speaker
called IPA or Interpretive Phenomenological Analysis Framework, which you pull in everything that people say. So I didn't go into it saying like, oh, I'm only going to look at attention dysregulation and only, you know, bring in the results relevant to that. I brought in everything that people said, even if that had nothing to do with what I was originally asking.
00:09:38
Speaker
So could you explain, cause you whispered something to me about this IPA stuff. Oh no, I just, I just, no. I was talking about whole ale. I was thinking that as well. It's a kind of beer. It's all a kind of beer. All for a kind of beer. I'm sorry. None of UK listeners will not know that, or may not know that. I know East coast of America, there's quite a lot of IPA around. Oh, most definitely. Even more on the West coast here.
00:10:05
Speaker
All right anyway. Sorry about that. I promise I was listening. I do not like that. I hear buzzwords and the brain goes. Tess works in a pub so she's working around IPA quite a lot.
00:10:19
Speaker
Speaking of things going on on the tangent, but what is the your sense of the IPA? I mean, we don't necessarily need to have a technical discussion, but how do we get how do you turn a big mass of transcripts, presumably of a conversation into something that makes sense? Yeah. And it's kind of rigorous scientifically.
00:10:37
Speaker
Yeah, it took a lot of time and using a specific software for qualitative analysis that me and another researcher took the transcripts and we talked about them together to come up with like a preliminary main framework of like these were the main themes that came up but and then from them separately without communicating with each other.
00:11:00
Speaker
went and coded everything. So having it like a theme and a sub theme and a sub sub theme and like divvying all the quotes into what bucket they fit in best. Um, and as we did that, we were coming up with more themes and more groupings and more different ways to organize it separately. And so then we got, we met together and then just like your discussion said, Oh, is, does this quote make sense in this bucket or did it belong somewhere else? Or does this grouping of
00:11:27
Speaker
whatever symptom under impulsivity, does that make sense here? Or is that actually more hyperactivity? And then re so came up with a new framework based off our discussion and went back and recoded everything under that. Wow. So it's quite labor intensive in lots of ways. Yeah, this Yeah, the project I took a research year in medical school, which allowed me to do this project. Okay. Not to um,
00:11:55
Speaker
sorry oh my brain's gone carry on
00:11:58
Speaker
Sure. Well, I was going to ask, um, yeah, I was going to ask what kind of, um, coding themes you had, but I thought that that might lead on too soon to the second question. I think it's a good time. Okay. So what were your things?
Understanding ADHD: Attention vs Dysregulation
00:12:15
Speaker
So there were a lot of, I'll stick with like the main overarching things and we can divvy into the sub things as we go. Um, but the main themes that.
00:12:28
Speaker
came out where attention dysregulation, as evidenced by the title of the paper, and then another large theme that emerged was emotional dysregulation, and under that, especially rejection sensitivity dysphoria.
00:12:45
Speaker
Hyperactivity and impulsivity were touched on a bit, but I find some of the less mostly aligned with what the medical community already kind of knows about ADHD and then how symptoms change over time with these adults reflecting back on when they were children and how different symptoms have manifested differently or how they've coped and things like that.
00:13:13
Speaker
So those are the main buckets that things fell into, but lots of sub-buckets as well. Yeah, well, let's explore the buckets. Yeah. Let's have a dig around in the bucket, shall we? I mean, the key for me, from the first bucket that you mentioned, attention dysregulation, I think that's what you said, because obviously the criteria say an attention deficit. So what's the difference?
00:13:42
Speaker
Yeah, so that is okay. Before I answer that question, I just want to point out there's one other bucket I forgot to mention, which was perceptions on the diagnostic criteria themselves. We can circle back. I just wanted to put that out there before I forgot. So the attention deficit would imply that you're bad at paying attention to things all of the time with everything, which I think all of us with ADHD know is not quite how that really
00:14:10
Speaker
works for us. People reported being able to hyper focus or focus very well on topics that were of personal interest. Some people refer to that as their superpower. Like if I really care about something, if I'm hyper fixated on this topic, I can for hours and hours and hours look into it or play this video game or
00:14:34
Speaker
you know, research on this, you know, topic I find super interesting. And a lot of people found that very advantageous. But also it can come with its own problems if you're so hyper focused on something that you find interesting that you're neglecting other things that you like should be doing. Yes. And a lot of people also reported time blindness during hyper focusing where you hours could go by and it felt like only five minutes. Yeah, the test has got marked time blindness.
00:15:04
Speaker
Well it's that thing isn't it of not being able to focus on like an important assignment for more than like 30 seconds but being able to go deep into researching some like ancient disease that no one's found the answer to.
00:15:19
Speaker
And then your dad calls you and is like, I called you for dinner like three hours ago. Where are you? It's cold on the side. Yeah, that's actually sad. Something people reported a lot was kind of neglecting like basic life tasks, like remembering to eat was a very common thing that came up.
00:15:37
Speaker
Yeah, and I mean, remembering to go to the toilet is a really common one in children. Obviously, I'm a pediatrician, so I don't, you know, that's my main patient group. But I think, you know, it's just forgetting that to have attention, not just to pay attention to things, but to pay attention to your own body is a really interesting kind of aspect of that. Unfortunately, you don't see that much in young adults, it's good, it's fair to say. So yeah, so I think that
00:16:04
Speaker
it already challenges how ADHD is conceptualised, because it's conceptualised as a deficit in attention, which really increasingly doesn't make sense. And the second thing, I mean, the emotional dysregulation, well, I talk about a lot, but please tell us what your group said about emotional dysregulation, because I don't want to jump in with all of my... We're not interviewing me.
00:16:31
Speaker
So yeah, we found that a lot of people reported really intense emotions that were able to fluctuate very quickly. So like kind of going from zero to 100.
00:16:42
Speaker
in either positive or negative directions. And a lot of people's, so yeah, that was like the main like dysregulation part of it. But under that, a lot of people express difficulty, either communicating their emotional feelings to others, like finding words to describe them, or struggling to conceal their emotions. You know, different people, other people said it was hard to
00:17:08
Speaker
you know, not show their emotions to others, you know, their face, like not having a poker face at all. We also found that a lot of people found difficulty feeling their emotions in the moment they had, they like kind of this, as you're mentioning a disconnect from your body, a disconnect, feeling what emotions you're feeling and having difficulty naming them or Alexa Thymia, not being able to name or, yeah, or discuss what feelings you're having in that moment.
00:17:37
Speaker
Alexithymia is very interesting and also one of the best words in the English language. As you say, it's the difficulty with expressing and explaining your own emotions. And it's often thought of as something that's kind of something more of an autistic trait, but I think it's increasingly clear that it's common in ADHD as well. Yeah, that's disconnect, isn't it? Another theme that's coming up. Could you give a quick example of the Alexa thing?
00:18:02
Speaker
I forgot the second part of the word. So like an example could be, I'm going to make up a situation right now. But let's say one of you says something very either mean or nice to me at this moment, and I start having an emotional reaction to that.
00:18:19
Speaker
But I'm not able to like, I realize, like, put words to what's happening. I might notice like I'm having an emotional reaction. But it's hard for me to say, it might even be hard for me to realize I'm having an emotional reaction. But I can't name what that is. I can't say I am angry. I am flattered. I am. Yeah, I just like oftentimes people when they look back, whether that be hours or days later can say, Oh, I was feeling this but couldn't do that in the moment.
00:18:48
Speaker
That makes a lot of sense, you know. It is. The question is whether it's primarily to do with the fact that you're just finding the emotion so overwhelming because of this relation, or whether it's due to something more cognitive to do with how you are naming your own feelings. I know it's very, very difficult to know which one of that is. And it's probably a mixture of both, to be honest. I'd love for more research trying to figure out the answer to that question.
00:19:13
Speaker
Yeah, exactly. Because I mean, how would you, well, I suppose you'd have to have hot and cold situations where you're actually feeling versus labelling and trying to match those two up. Do you see me trying to label situations and what I'm feeling or what I would be feeling in that situation versus actually experiencing it? There's all kinds of external stuff happening there as well. It would be very difficult to do, but... Yeah, but that's psychology, isn't it? Well, yes, Dad. Thank you.
00:19:38
Speaker
That's the first yes diet of the series. Okay. Tell us more about RSD.
Emotional Dysregulation and RSD
00:19:45
Speaker
It has come up before, I think briefly, but I don't think we had a proper discussion of RSD recently on the podcast. So let's dig in a little bit into that.
00:19:56
Speaker
Okay, so RSD or rejection sensitivity dysphoria is, as the name kind of explains, feeling overly sensitive to feelings of rejection, which a lot of most people in the study reported. And something that was really interesting is that they recognized that their emotions were out of proportion to the situation.
00:20:18
Speaker
But they still weren't able to control that response. They still felt as dysphoric, even though they thought, oh, they didn't even mean to exclude me. Like, I understand this is not a personal attack, but I still feel that it is.
00:20:33
Speaker
And a lot of triggers for RSD were perceived social exclusion or abandonment or even like receiving negative feedback at work or like academic underperformance triggered this rejection sensitivity. And I'll pause there for a moment.
00:20:51
Speaker
No, I mean, I find it really interesting. I mean, when I've done a little bit of reading around, two questions really spring to mind for me. One is, do you think that RSD is more common in people with ADHD than the general population? And if so, why?
00:21:09
Speaker
Yeah, excellent question that was answered in part by some of the study participants that yes, I do think it's more common among people with ADHD, although it's definitely not exclusive to people with ADHD. It also comes up, everyone feels this sometimes, but it comes up clinically also in borderline personality disorder and atypical depression. So it's definitely not an exclusively ADHD phenomenon. However, I do think people with ADHD experience it more than the general population.
00:21:37
Speaker
And this is speculated on by a few of the study participants. A few people said that this could be, I see a learned response to getting rejected repeatedly over their developmental years because they're neurodivergent, because they don't fit in as well with the main social fabric, and kind of learning like, oh, I'm going to be rejected because I've been rejected before, so I'm like hypers, like aware of this happening again.
00:22:09
Speaker
It's speculative, but it could be. And then there's the emotional dysregulation itself, which gives you that feeling of you're sensitive to rejection and you feel it really intensely, even though you can at some level remove yourself from that feeling and kind of get a bit of objectivity from it and kind of perspective on it and say, well, I know this isn't anything personal, but I really feel terrible about it. Right.
00:22:36
Speaker
I mean, the third bucket, which seems a smaller bucket, more of a kind of bowl. One of those little buckets that kids have on the beach.
00:22:47
Speaker
Oh, I was thinking like the trick-or-treating buckets with the pumpkin.
Hyperactivity and Impulsivity Insights
00:22:51
Speaker
Trick-or-treating buckets these days are massive. Not like when I was a boy when trick-or-treat was not a thing. Back in the good old days. Anyway, now I like trick-or-treating. RSD goes quite beautifully in hand with impulsivity, doesn't it? Because you do something impulsive.
00:23:10
Speaker
you don't quite get the reaction that you expect. So the little bucket we're talking about is the hyperactivity and impulsivity bucket. I've just cut you off, haven't I? No, no, that's fine. So just to clarify to the listeners that that's what we're all talking about. We all understand what we're talking about. You said that opens up another bucket and I didn't even let you say what the bucket was. I was like, anyway, what I was thinking. I mean, we know from, anyway, sorry, we know from
00:23:36
Speaker
We know from clinical practice and from all the studies over time that the hyperactivity of a young child tends to turn into something that looks quite different in adults, doesn't it? What does your participants experience in terms of what their hyperactivity has turned into? Right. Like you said, most people didn't experience like Frank running around
00:24:03
Speaker
in the way that they did when they were children and some never experienced that. But a lot of people reported that it turned into this like mental hyperactivity or like racing thoughts as opposed to a physical need to move around. It was that their mind couldn't stay in one place.
00:24:22
Speaker
Yeah, more of an internalized restlessness. Yes. Like feeling restless, but not in a way that was helped necessarily by walking around. Yeah. Yes. I mean, I suppose and the
00:24:39
Speaker
interesting, isn't it? Because in younger children, the advice is to sort of walk it off when you're feeling restless to kind of get a bit of exercise. And I think exercise probably is helpful for adults, but in a different way, maybe more in an emotional way. And I think if the restlessness that you're feeling is a psychological thing, rather than a physical thing, then walking is not necessarily going to help because that walking can be very under stimulating. So thinking about all the thoughts that we've had so far about
Critique of Current ADHD Criteria
00:25:09
Speaker
how people experience ADHD versus the criteria. What thoughts do people have in your
00:25:16
Speaker
focus groups about what the criteria should be, what's wrong with it and what needs to change. Yeah. So a lot of people felt that the current trifecta of inattentional hyperactivity and impulsivity was very limiting, that there should be more criteria in addition to those criteria themselves. Like, for example, inattention, not even accurately capturing the experience.
00:25:46
Speaker
but really expanding out to capturing things that we talked about like the emotional dysregulation, hyper focusing things like that.
00:25:56
Speaker
Also, at least in the United States, for the criteria that is made for children and we don't have updated guidelines for adults, so it leads to a lot of wording that was seen as infantilizing, such as, is this developmentally appropriate? Well, some of these people are 30 years old. They're like, what does developmentally appropriate mean for me? Exactly.
00:26:22
Speaker
Those were kind of some of the main buckets for that we need to expand it and also this kind of gets into some data I put in a side, put in like two different paper but saying that a lot of the way we diagnose mental illness and mental health conditions in
00:26:41
Speaker
Right now is focusing on how these symptoms present externally to the person who's evaluating you or like how does it present to the other people in your life, as opposed to what does it present to meet for the experience of feeling it. That's not something that we capture really.
00:26:58
Speaker
very well, I think, in how we diagnose things. And there are reasons, of course, to try to have more objectivity with how someone can evaluate you, to be like, is this person acting in this way? Is this person reporting, you know, how in this more interpersonal, external kind of presentation? But I think it really
00:27:19
Speaker
lacks that more nuanced like subjective experience of what it might mean to feel something. And I think an example for this could be as we were talking about time blindness earlier, someone, you know, in a more clinical way might say patient was late to the appointment, whereas, you know, that's kind of an external and also the kind of value judgment. As opposed to saying I experienced the passage of time differently is like a different way to frame that same thing.
00:27:48
Speaker
framing it more as what the person is actually experiencing. It seems to me pretty obvious that at some point things are going to have to change in terms of the diagnostic criteria, and particularly for adults. One of the things that you said is that people want additions to the criteria. Did anyone say we should just throw it all out and start again?
00:28:17
Speaker
not explicitly in those words, although I think that if I would have, this is me speculating, but I think if I would have proposed that people would have been receptive to that idea. But that's, as you mentioned earlier, the framing, I was framing, how do we think about these current criteria? What do you think could be better? So I think that's why those are the kind of answers that I got.
00:28:48
Speaker
I mean, my brain's going in all sorts of different directions. I mean, one of the criticisms that people might, but one of the things that people come back with when you say, well, we would like to add these other things into the diagnostic criteria is well, are they specific enough? And there's kind of, it's absolutely is a different, there's a difference between appreciating within a population, you know, people with ADHD,
00:29:14
Speaker
have a lot of emotional dysregulation, we need to find things to help with that. Versus we think emotional dysregulation should be a criteria for the condition. Because if it's not that specific to the condition, it doesn't, it doesn't help. Right. No, I completely hear that. And I think that we need
00:29:32
Speaker
this is kind of a cop-out answer, but I think that we need more research to figure out exactly how, because my study is very preliminary. It's, you know, just me asking some people who signed up for my study what they're experiencing. We need more generalizable study. So it's like, is alexithymia something that
00:29:50
Speaker
is, you know, people outside of ADHD experience it, but how many people with ADHD do experience it? And how specific is it exactly? Getting at like more psychometric properties of these other symptoms. So I think it is too early for me to say like, all of these should be 100% in the diagnostic criteria, because as you mentioned, how specific are they? Or how sensitive are they for ADHD? So I think that
00:30:17
Speaker
It's yet to be determined, but I think that part of what my study set out to do is kind of lay the groundwork for these questions to be answered down the road by more, you know, large scale, more like quantitative methods. Hmm. Should we go? Go on. Sorry. So what does this mean for people working with ADHD people? So like clinicians, parents, things like that.
00:30:43
Speaker
Yeah, I think it means that first off, if someone says they have ADHD, don't assume that that only means the three, you know, the trifecta of the three symptoms have an open mind. I think this person is probably experiencing a lot more than that in ways that affect lots of different facets, probably every facet of their lives.
00:31:04
Speaker
Um, like their interpersonal relationships, how they function at school and how they function at work. I guess we already kind of think about how people function at school and work. Um, but I feel like a lot less is captured, um, on people's like relationship with others and their relationship with themselves. So I think having a bit of an open mind, um,
Recommendations for Supporting ADHD
00:31:23
Speaker
with that mentality and not like putting everything into like check boxes per se. Yes. We.
00:31:31
Speaker
check a lot of boxes in medicine. That is something that we have to do. But I feel like having a little bit more fluidity in your approach. And I think a lot of this comes into, if you're looking at it from a more psychotherapy perspective, being able to explore all of these different, how ADHD affects all these different facets, and how much of this is, and a lot of people have more existential
00:31:58
Speaker
concerns like what is me? What is the ADHD? Can I even disentangle these two things? I think there's a lot of work to be done with there. Is that what you were asking exactly? I think so. I suppose my question is, you're a clinician, you're now practicing. What do you do to help people
00:32:22
Speaker
who have ADHD, who your patients with their emotional dysregulation, you know, we know kind of how to treat the core symptoms, the hypertension, blah, blah, blah. But how do you help people with emotional dysregulation as a doctor? Yeah, I think that part of it, even just naming that, like, that is something that's going on that we think might be related to ADHD can be very validating for people to hear.
00:32:47
Speaker
even just like thinking that like they're alone in this and this is just them by themselves. I think that helping connect people to support groups, whether they be online or otherwise can be really helpful for people to process these emotions with others who are also experiencing similar emotions, a big proponent of group therapy for people with ADHD. I think that can be
00:33:13
Speaker
really helpful in normalizing and hearing from others who are experiencing the same thing, how they've coped with these emotions.
00:33:24
Speaker
And sort of moving on to, to RSD because people, it's not, I mean, it's not something that's diagnosed specifically in the UK. We don't necessarily talk about it as a diagnosis in and of itself. So what guidance can you give to people who kind of feel they might be, this might be a problem, a big problem for them? Yeah. I, again, to say that name, giving a name to the experience can be really helpful to help people describe that that's what they're feeling. I also think,
00:33:53
Speaker
like really helping reiterate like to not take things as personally and really thinking that you know I'm a complicated person that does things for a lot of different reasons and so is this other person they have a lot of they are there a million reasons why they might not have like responded to my text or what whatever the situation is like it doesn't necessarily mean it's because they hate me they could have so much going on in their lives kind of like
00:34:21
Speaker
humanizing the other person that I think can be really helpful, especially because these are situations are often between people that they care about deeply because that's, you know, when rejection hurts the most and thinking like, and being, um, being able to form relationships that you are confident in and continue to be like, I know that they care about me deeply. And if they're not responding to me, it's not an attack. I trust that if there was a problem in our relationship, that they would bring it up more directly.
00:34:51
Speaker
I mean, I know that I can't apply my own experience to everyone who has ADHD, but I do find that rationalising can be quite helpful in these situations.
00:35:01
Speaker
know maybe this person didn't laugh at my joke because they're still worrying about the joke that they made five minutes ago that people didn't laugh. It's especially helpful when you have friends who are also near a divergent and very open about what's going on in their own brains because then you can apply what you know about them but if it's in a situation where you don't know them so well
00:35:23
Speaker
Like maybe it's a new, someone you've just sat next to and you really want them to feel cool. You know, that's when you don't really know what to do because you don't know enough about the person to think about it from their perspective. Yeah. And you don't know, yeah. And you don't know what's going on for them at that moment. And what they, they might be projecting all sorts of things on you as well, which aren't about you. Yeah.
00:35:49
Speaker
That last bit didn't really make any sense to me, but I'm just going to pretend it didn't. So for example, you're sitting next to somebody and you want them to, you know, you're, you're just being friendly. They might think that you're doing something else entirely. They might think that you're trying to trick them or trying to get something from them or, you know what I mean? What if I am though? What if you are? Exactly. So what I'm saying is if there's hostility or rejection from somebody else, it may be nothing to do with how you've approached the situation. It may be everything to do with
00:36:18
Speaker
how they're interpreting and seeing the situation. Exactly. But again, I know that this doesn't work for everyone. No, of course not. But it's a very, very common thing to try. It's a universal experience in life, generally to have these experiences. I mean, we're not saying, and I think any of us are saying that's unique to ADHD people, but I think ADHD people, for the reasons we've outlined, feel those situations far more acutely.
00:36:44
Speaker
Um, Callie, could I ask, is it, would it be right to say that not it, that, oh, hang on, let me restart that sentence. Callie, would it be right to say that it's not true that most people who have RSD have ADHD, but the, but the most people who have ADHD have symptoms of RSD? Oh, interesting. Yeah. I would.
00:37:07
Speaker
I think I got what you were saying. I don't think it made much sense. No, I think it did. I think there are a lot of people who have RSD for a lot of different reasons, and they may or may not have ADHD. But I think a lot of people with ADHD do have RSD. That's a much better way to put it. There you go. Well, you've just clarified it. That's absolutely fine. So let's move on to our fourth question.
00:37:31
Speaker
Oh, you want me to read it? That's traditional. What does this mean for ADHD people themselves? I feel like we've kind of just touched on this, but in a more general sense. Yeah. Yeah. I think that, yeah, I kind of just summarize a little bit of what we've been talking about. I think it means that you, what I'm trying to get is like, you aren't alone in the things that you are experiencing, even if they aren't currently captured by the medical community, that there are a lot of people with ADHD experiencing similar things and that
00:38:00
Speaker
Um, we'd recommend like reaching out, like, you know, obviously most of us with ADHD have people in our families who are also have ADHD because that's how this works. Um, but also, you know, reaching out to people, um, in general to form these, these networks, um, I think can be really important. I think also just being aware that like having to bring some awareness to like, Oh, I am experiencing this, you know, intense emotion and
00:38:27
Speaker
being like, that is something that I do. And that's okay. But how do I cope with this, being able to like, kind of break down
ADHD Across the Lifespan
00:38:35
Speaker
the things that might be causing you distress from your ADHD symptoms or from other people's perception of your ADHD symptoms and like, break them down bit by bit and see how you can manage each one individually. Yeah.
00:38:52
Speaker
And I think what I've just been thinking about is how, what it means for maybe young people, maybe children or adolescents who are just kind of getting their ADHD, diagnosis. And I think one of the things that, you know, we often say, I don't know what you say when you kind of maybe diagnosing somebody at 12 or 13 or when you were diagnosed, 14? 15. 15, okay. 14? I should definitely know this. 18 of some kind.
00:39:22
Speaker
you know, what's going to change? One of the really interesting questions is what is it, you know, what's this going to look like in 10 years time, 15 years time? And I think that's something that's kind of valuable to have that kind of data about, well, these are a group of people in the next generation up, but this is how they experienced their ADHD at this point. Right. No, thank you for asking. I think that we're all probably on the same page that, you know,
00:39:49
Speaker
It used to be that ADHD was something that they thought everyone just grows out of, and then once you're an adult, it's gone. I think we're all aware that that's not quite how this works. I think for the majority of people, ADHD is something that still affects you throughout your lifespan. It might not be in the same ways as it did when you were a child, and that can be for a few different reasons. Some of that could just be neurodevelopmentally growing out of some of the symptoms.
00:40:16
Speaker
Other parts of that can be developing coping skills that this symptom that you had that was causing you problems all the time, like losing your keys. Well, now you have a system to keep your keys in place. So it's not causing problems anymore. The underlying disorganization that you have hasn't changed, but your way of coping with it has. So that also could be.
00:40:36
Speaker
you know, creating environments that you are more likely to flourish in as an adult. You know, a lot of people like in the school system, it's like too constrictive or restrictive that it be able to have more room for creativity and flexibility in your adult life.
00:40:52
Speaker
can be helpful for some. I'm someone who needs a lot of structure in my life personally. I do not do well when there's too many possibilities. I need a calendar of my day that plans it out personally. But I'm able to plan that in my life, having what time I set aside for certain things. And that helps have my environment be something I can flourish in better. So I think that, and then also through medications, through therapy, through other ways
00:41:21
Speaker
of coping can also make things a lot easier as an adult. But sometimes also, you know, added added stressors of adulthood come in, you know, there's taxes and bills and everything that you have to deal with as an adult that you didn't have to worry about. That's very stressful. Very stressful. I tell you, particularly all three of them ADHD as well.
00:41:45
Speaker
Yeah. So I think it's an oversimplification to say things only get easier as an adult. I think there are new stressors that can arise that, you know, you haven't confronted before that you're now coping with ADHD in this certain situation for the first time as an adult. I think one of the things I agree with all of that, but I think the one thing that I always think about is that you're very powerless as a child and you sort of that's kind of okay.
00:42:12
Speaker
because children aren't bothered by their lack of power. But you're incredibly powerless as an adolescent, I think, in society. You are. And you're having to deal with all of this by being effectively just being told what to do all the time, which is really difficult. And one of the things that I think is easier about ADHD as you're an adult is simply to do you are more valued by society, delighting on our part.
00:42:42
Speaker
you are more valued by society, your skills are more valued, you will find a niche where your weaknesses will be downplayed and your strengths will be emphasized. It makes it easier. We talk about this a lot when it comes to the school system, the fact that it's very much
00:43:04
Speaker
it takes a one size fits all approach. And I think in ADHD, for example, like this is just an example. I mean, this happens with all kinds of people, right? But specifically in ADHD, I feel like sometimes strengths, the strengths that we have don't quite line up with the strengths that the school system expects us to have.
Coping with ADHD in Psychiatry
00:43:23
Speaker
I was counting about this and you don't
00:43:28
Speaker
only say what you're comfortable saying, but as a resident with ADHD in psychiatry, which can't be, you know, can't be that easy, how do you manage? How do you cope with your ADHD and everything medicine demands of you? Yeah, so I find personally, it's easier as now than it was when I was in elementary school. And that's because I
00:43:52
Speaker
have a lot more access and awareness of ways to cope than I did when I was a young child who had no idea about any of this. I wasn't diagnosed until I was 19. And so part of that medication is I just find it incredibly helpful in being able to do my work in orders that I need to. But I also find that having
00:44:15
Speaker
like having a little bit of time where I can like reflect on what's going on. And like, this is like stuff that's for anyone in psychiatry, but I find it also helpful for an ADHD, especially like on the commute back home after work, really reflecting on, you know, everything that was piling up during the day. You know, a lot of patients have incredibly sad situations that they're in. That's the norm instead of the exception, especially because I'm working on inpatient psych right now.
00:44:45
Speaker
Um, and so being able to reflect back on, you know, what, what about, what about am I carrying home with me from work today? And how much of that can I leave at work and how much do I need to like process further? Cause I think part of it, um, and again, this isn't specific to ADHD, but I feel like that's one of the biggest things that I need in my work. Um, I think also.
00:45:09
Speaker
Like in terms of task prioritization, I find it like if I have 10 tasks, like a lot of people might find it easier to start with the hardest one first. I find that exhausting. Like get rid of like three super easy tasks as like a warmup. Yeah, if it's just like a quick, like something I need to put in or something I need to like really quickly, knock that out of the way first. Now you only have like three tasks left or however many it is. And even though they're harder.
00:45:39
Speaker
Yeah. And do you do the thing, and I admit that I do this, you do the thing, you do a thing where you put something on your list of tasks that you've already done. Yeah. I'm making progress. An empty to-do list is very overwhelming. I'm obviously thinking about you and your room, which is a task in itself. You do not need to bring us up. It's basically the one thing we fight about.
00:46:05
Speaker
Yeah. More or less. Oh, never mind. So let's not talk about it, shall we? Kelly, what is your next research question? What's the thing that you want to research next? Do you want to kind of look into next in your, in your career?
Future Research Directions
00:46:21
Speaker
Yeah. So I'm on a little bit of a, oh, did you remember the question? Yes. Maybe it's, ask it now. We'll seize the moment. Go on Tess. Okay.
00:46:36
Speaker
It was something along the lines of, oh yeah, okay. So I did have a question about the research that I probably should have mentioned earlier. And it was that you mentioned that you started off with a set of categories that you expected to come up, right? When you were having the discussions. Was there anything that came up during those discussions that you weren't expecting that you had to kind of create this whole new category for? Cause you just, you know,
00:47:05
Speaker
Yeah, no, thank you. I think a few, like one that's coming to mind immediately is like Alexithymia. I had not thought about that in the context of ADHD for this study at all, but it came up multiple times in different focus groups. And like also the way that people communicate their emotions with other people wasn't something I was coming in here expecting to talk about, but it came up time and time again. So like time blindness. So a lot of the findings that we're talking about, I
00:47:33
Speaker
knew about, but I wasn't thinking about for this study. And the participants brought them up many times over. So yeah, those are the main findings, I think jumped out on their own.
00:47:50
Speaker
So what is your next research question? What's the thing that you want to find out next about ADHD? I think one of the things I want, like this isn't so much research, but I think one of the important next steps is coming up with
00:48:07
Speaker
like guidelines for diagnosis of adult ADHD for the United States because we don't have that currently. So that's not like research per se, but like it's something that needs to be done for next steps. So I think that's definitely one aspect. I think in terms of like a project, this is very like still just like in the back of my brain simmering around. I haven't made any actionable steps on this yet. But I think that
00:48:35
Speaker
Um, it's like within the ADHD community, there's a lot of discussion about the ways that ADHD is similar to and different from autism that I feel like, um, you know, in there seems like two very different things medically that have, you know, they used to be diagnostically exclusive. You used to not be able to be diagnosed with both. And now it's, you know, it's even, you know, it's just discussed as like, Oh, is this like a continuum? Are these like part of a spectrum with each other? How much of these are just co-diagnosed? How much of these?
00:49:06
Speaker
Um, like what about them is different? I think there's like a, like getting a group of people who have ADHD and autism. So people have one and not the other and really exploring like that, like what is actually unique to each of these, these diagnoses and how much of these overlap. Yeah. Yeah. And that's fascinating area. I mean, obviously there's.
00:49:27
Speaker
there's research on that in children in terms of behaviour, but moving that to the subjective experience of adults with these conditions. I mean, in a way, before we did the ADHD Science Podcast, we did Extraordinary Brains, where we basically interviewed and got the life stories of people with autism slash ADHD slash another neurodiversity.
00:49:50
Speaker
In a sense, I mean, I'm not saying that Extraordinary Brains is anything like a kind of research project, but actually, in a way, we've got that. That's what we collected. We collected that in a very uncontrolled way. We can get that data because we ended up with lots of people with both, some with one, some with the other. Yeah. I mean, ADHD and autism were the things that did tend to come up quite a lot on that podcast, but there was also all kinds of stuff we looked at. We talked to some people with dyspraxia, dyslexia, you know, all these kinds of things.
00:50:20
Speaker
Well, never mind. Well, that's fab. I think we've pretty much done. I think I think we're going to leave any further discussion to another time because we need. So I'll just I will basically will do a little we'll do a bit in a minute where we just. Thank thank you and say goodbye. Unless is there anything else that you wanted to kind of reflect on or think about that comes from our discussion today?
00:50:50
Speaker
I think, yeah, you two have been completely wonderful. I think I've touched on everything that I came in here wanting to make sure that I said. So thank you so much.
00:51:00
Speaker
Okay, great. Well, Callie, thank you so much for joining us and hopefully we can get together again, because I know, I hear a rumor that there's some other interesting stuff about virtual media that you have under your hat as well. But I'm exhausted, we've exhausted ourselves for today. And we need to go away and edit the hell out of this. Thank you so much for joining us today. Thank you so much.
00:51:26
Speaker
Okay, so that was Kali. Sure was. Tess wants to change the format in a way that I don't want to do.
00:51:36
Speaker
I'm sorry. We discussed having a thing at the start where after the intro we go, who's that at the door? And I'm too old and boring to think that that's fun. So, okay, so let's do a vote. If you want us to start saying who's that at the door, please contact us via the ADHD UK charity on Twitter, Facebook. And contact us there if you want
00:52:02
Speaker
If you want anything else, just text us. We're available. There's a feedback section on the website. There's a section for the podcast on the ADHD UK website. And while you're there, look at all the excellent work that ADHD UK Charity is doing for people. And check out Callie. And check out Callie, whose social media we will post in the episode description. She was very good and very interesting. And thank you, Callie.
00:52:26
Speaker
and hopefully we'll get her on again when she's going to talk about social media. Woo! Alright, that's enough gassing from us. Goodbye! And not enough gassing yet from our dog apparently who smells really bad. More on that as we get it. Bye!