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Episode 31 Late Diagnosis of women with Eve Holden and Helena Kobayashi-Wood
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Max is joined by a brilliant double-act, Eve and Helena, who have explored the experience of late-diagnosed women, both from the inside and outside!
The paper is here. The additional data is here.
The episode that Eve liked was with Callie Ginapp, and is here
On Bluesky...
Eve can be found at @chimpanzeve.bsky.social
Helena is @hkobayashiwood.bsky.social
Max is also on there somewhere...
Recommended
Transcript
Introduction to ADHD Science Podcast
00:00:08
Speaker
Hello, welcome to the ADHD Science Podcast, I'm Max Davey. ah No test today, she remains in Thailand, um which is obviously very annoying, partly because she's not on the pod, and partly because she keeps sending me photos of beach parties or lovely temples and the stuff, which is just irritating when you're not there. um Anyway, she will be back at some point, we hope.
00:00:33
Speaker
And should definitely be back in England. This is whether we should be back on the podcast. Don't worry, she's fine.
Guests Introduction: Eve and Helena on Late ADHD in Women
00:00:39
Speaker
um and But we have got an episode, and actually we have got two guests, which sort of compensated for the lack of tests a little bit.
00:00:48
Speaker
We have Eve Holden and Helena Kobayashi-Wood, who are going to talk to me about late diagnosis in women. And It's a very, very common topic of discussion.
Personal and Research Perspectives on Late Diagnosis
00:01:03
Speaker
um Obviously the experience of late diagnosis, the experience of women before the diagnosis is obviously very difficult and it's certainly something that's a very prominent part of the conversations in the various support groups that we at ADHD UK run.
00:01:21
Speaker
But to apply um what is both a very personal lens from both of these women who are late diagnosed with ADHD, but also a research lens, which allows people to tell their story in a way that is also quite analyzed in quite so a robust way.
00:01:42
Speaker
It's just fascinating work. There's lots and lots of people people's stories rather than trying to kind of capture any kind of quality quantitative data about it. But nonetheless, I think they so they they they come to some really important insights.
00:01:58
Speaker
So that's enough of me. i will start talking to Eve and Helena. Thanks very much. Okay, welcome Eve and Helena.
Eve and Helena's Personal Journeys with ADHD
00:02:09
Speaker
ah Thank you so much for joining me today. Could you introduce yourselves? Yeah, hi, I'm Eve and and I'm a developmental psychologist.
00:02:19
Speaker
um And yeah, I generally do research with children and infants, but I guess I'm ADHD is also a neurodevelopmental disorder and and I also have ADHD myself and so that's kind of how this fits into my normal research that I'm doing.
00:02:42
Speaker
Excellent. And my name is Helena. i I'm currently a clinician within CAMHS but the context of our research was and when I was doing and my undergrad.
00:02:55
Speaker
That was when we were doing carrying out this research. um And so although on my day to day, I'm kind of doing clinical work, um I still have a research interest as well.
00:03:06
Speaker
Yes, because you're doing the Masters and kind of going to develop in that direction. Fantastic. So let's dive straight into the paper.
Research Focus: Adverse Experiences of Undiagnosed ADHD
00:03:15
Speaker
Actually, it's come out since we've talked, because I think I tracked you down yeah before it came out. i believe it's come out.
00:03:22
Speaker
and Adverse Experiences of Women with Undiagnosed ADHD and the Invaluable Role of Diagnosis. Now, I don't always read out the title of papers, but it's eminently clear.
00:03:33
Speaker
Do you see what I mean? There's no jargon in your title, which makes it so helpful. um So we know pretty much what we're talking about. But nonetheless, let's stick to format. um What was the question that you were answering in your paper?
00:03:47
Speaker
ah suppose the context of our research is quite an important and element for us. So and this research was part of my undergraduate dissertation.
00:04:02
Speaker
and In psychology? Yes. So when I came to thinking about what topic I wanted to do for my dissertation, I knew I wanted to do something I really cared about.
00:04:13
Speaker
ah and I just kind of come to the realisation that ADHD was kind of the missing puzzle piece for a lot of my experiences. Oh, that was around the time of your own diagnosis?
00:04:25
Speaker
Yes, yeah. and So proposed the topic, I'd kind of had a little look at and their current research was out that was out there and realised that there was a real lack of research on ADHD in women, especially women who've been late diagnosed.
00:04:42
Speaker
Proposed the topic to Eve and purely coincidentally, She's also a late diagnosed ADHD-er. Yeah, so Helena proposed the project to me and I'm like, oh my God, that's pulling at my heartstrings. So at that point, I've been diagnosed, I think maybe for, I think maybe a year I'd been diagnosed, um but I was also late diagnosed. um And so it really struck a chord with me. the And I also like to supervise students. If students are passionate about the project and interested in the project, I think it tends to
00:05:17
Speaker
make a better project in the end so um i was super happy to get on board and like work with um push this take this project forward it was very much a pure coincidence but a kind of perfect batch for the topic um so yeah i guess in terms of going back to what what you actually asked there the question that we wanted to answer was what are don't know where this um Yeah, how do the women who have been late diagnosed themselves actually... and I'm losing my train of thought. How do they feel about their diagnosis and what was kind of... So what Helena proposed to me was to explore like water what are late diagnosed women's, what is their journey to diagnosis and like how are they feeling about that?
00:06:11
Speaker
um I think especially from the part that felt really important to me was from... their own perspective and in their words. and Quantitative research is obviously incredibly valuable and having statistical, you know, a data that we can statistically analyze, but actually when it comes to talking about human experience, that's really, you know, these are experiences that are are really um emotional and and people have gone through a lot through that journey of diagnosis. So I think, um,
00:06:47
Speaker
a big element of this research that I feel like is important is that it it comes from comes from the participants' own words, if that makes sense. Yeah, so rather you're not trying to impose any kind of categories, you're not running kind of questionnaires, and to what extent do you feel X and Y and all that sort of stuff.
00:07:06
Speaker
And so we think that stuff's really valuable and we're engaged in research that takes that approach. Yeah, not to say that that's not a valuable approach, yeah. I think that something that's not represented a lot or people don't always often take that approach. And I think that it's something that can be super valuable is really getting this more qualitative approach.
Methodology: Qualitative Data Collection and Recruitment
00:07:27
Speaker
So um getting people to, it makes it so much more personal, right? You're not just a number in a statistic. Like we wanted to really hear from participants. You get that, you understand their perspectives better by get letting them respond in their own words and you
00:07:45
Speaker
I think you get a better understanding of people's lives and how it's lived if you're letting them respond with their own words rather than like on ah just on a rating scale or and just on kind of like closed answer questions. So I suppose, I suppose my, my question would be, how did you find your subjects? How, what was your strategy for finding these people? And and did you want,
00:08:11
Speaker
a representative sample or did you just see who came? What was the kind of approach there?
00:08:18
Speaker
Yeah, I can't remember the name of the database, to be honest, so long ago. So within when we did the data collection for this project, it started off as and Helena's undergraduate dissertation project for her psychology degree.
00:08:32
Speaker
And so within that, we have some constraints in terms of like how much time we can um spend on data collection, how what resources we have access to. um And so ideally, when people start asking these kinds of questions, usually they think, okay, well, this would be, these questions would best be answered through interviews. and But within the scope of us doing this project at the start, there wasn't the timeline and there wasn't the facilities to be able to like train Helena up properly in doing like interview techniques to make sure that it's
00:09:07
Speaker
um to make sure that she's best supported. So we opted to do it in a questionnaire format, and but we tried to design the questionnaire so that we have some questions which are like, yes, no, or rate this question, but the majority of the questionnaire was kind of like, tell us what you think, explain your answers, like, where are you coming from? So these kind of open answer questionnaires, we tried to design it to try and prompt as full responses as possible, which is not something that's done particularly often and i've not seen it no often when people are doing questionnaires that they have these kind of open answer responses they're more kind of like follow-up questions rather than the focus of it but we really wanted to try and elicit as much writing and as much perspective as possible from the participants and then and we used um prolific which is uh
00:09:59
Speaker
basically a questionnaire like research recruitment sites are prolific. and You can recruit participants from all over the world. right, okay. and Basically, these people are signed up to take part in research and you can filter for different things on that and site. So given the ethics that we had approved for the study, and it was approved for doing research with and people from the UK. and Since not that much research had been done on this in the past, we figured that was an okay limit to put on things. So like having starting point, we're also both from the UK.
00:10:32
Speaker
um And so we can filter for women, we can filter for people from the UK. um And you can we can there's also one of the great things about prolific is you can filter for people who have ADHD. So and we put a filter on it for that. So then the study is then advertised to people um on prolific and to people of the demographic that we were interested in.
00:10:56
Speaker
and And then from there, we didn't put any stipulations on like their age or anything, but we also didn't say it specifically had to be like representative, but we were interested in getting people from not just, so like other research that's been done in this vein, there's maybe, maybe they've been people who are specifically students or within like a more closed age range. Like we were interested in wide perspectives and And what kind of demographic did you get? Did you get lots of different ages?
00:11:27
Speaker
i mean, I don't know how much you know about people's backgrounds, educational level and all that sort of stuff. Yeah. So we had and participants. I think our youngest participant was 19 at the time of data collection. And I think the eldest was 72. So a pretty big age.
00:11:43
Speaker
um And the age of their diagnosis was also pretty large. So the youngest diagnosis, they were 18. And I think the oldest was like 62 or something. So really large age, which they were answering the questions, but also a broad age range of terms of the age that they were diagnosed.
00:11:59
Speaker
and we had a range of educational backgrounds. So some people had got like postgraduate degrees, some people left high school without many degrees, without many degrees, without so many. Not many qualifications, yeah.
00:12:16
Speaker
And then in terms of, i think, other degraphic demographics, there was not much um ethnic diversity. So most of the participants were white British, and but there was, I think, maybe one or two that were not white British, I guess. yeah And then the other thing I suppose is that one of our, um one of the kind of constraints we had on the demographic was that it's cisgender women.
00:12:44
Speaker
and yeah The reason being because when we're thinking about um how they experienced the medical system and things like that, we're trying to think about, um you know, if somebody is perceived by the medical system as being female as being a ah woman then their experience is going to be different perhaps to somebody who is perhaps a transgender woman um in terms of you know the perception of the medical field i think and think there's a whole other so particularly relevant to adhd and late diagnosis in the
00:13:25
Speaker
Historically, I don't know if this has come up in the podcast before, and but there's been misconceptions that ADHD is only for boys or only for men and women and girls can't have it. And so and because it's one of the earlier pieces looking at these kinds of questions, we did limit it to cisgender women. But that's not to say that we aren't interested in those perspectives also.
00:13:46
Speaker
No, I think we've said as an aside that the the experience of of trans people ah in terms of ADHD diagnosis and in terms of management is an incredibly fascinating, complex area. And and there's probably a surprising number of potential subjects if you look at the trans community and the neurodivergence there.
00:14:05
Speaker
um But yeah I don't think we've unlocked that. And I think, yeah, it's something to park for it for another day. and and and i'm And, you know, the minute I see that coming up on my Google alerts, I'll be I'll be tracking down whoever's done that study.
00:14:18
Speaker
I mean, that's another for people who are looking into doing these research. It's another great thing about prolific is that you can filter for things like that. So you can specifically target people who have um gender nonconforming or trans backgrounds and you can filter for ADHD at the same time. And so it's something that um it's a it's a nice potentially platform from which to recruit people in that way, which might be harder to target people than it might be through like a social media advertisement or something like that. Yeah. And I suppose, you know, one of the worries you always have you are recruit, I mean, so many people at ADHD UK, we have so many people um recruiting through our groups on Facebook.
00:15:01
Speaker
And I suppose, yeah Because you're not explicitly going for a representative sample, you wouldn't say that your so findings apply to women as a whole. Necessarily, they are what they are.
00:15:14
Speaker
But I suppose even then, there are dangers that you get a bit of a ah niche sample of, you know, everyone who's who's in a particular Facebook group does it.
00:15:25
Speaker
Then you have got quite a bit bit of a biased sample there. So I think by using something which is a bit more representative of the whole population from prolific, you're at least moving away from some of the problems of clumping, you know, kind of groupthink, I suppose. and I was going say, I suppose, um you know, when we go on later on to talk about next research questions, we we are doing some follow-up research, which hopefully will kind of cover a wider demographic. And that's something that we've been thinking about is how we kind of try to recruit people from wide... From more diverse yeah backgrounds and
00:16:02
Speaker
from in different kinds of yeah i mean different. You've mentioned a relative of people from from different ethnic backgrounds. I think that's another fascinating question. it It raises other questions about intersectionality in different ways.
00:16:14
Speaker
and And that's something that we're definitely interested in looking into seeing maybe having more diverse ethnicities or genders in future research that we're doing.
00:16:27
Speaker
Yeah, absolutely. And yeah, that's another fascinating. But let's not talk about the the next research project. let's let's Let's try and talk about this one. We're already jumping around, sorry.
00:16:40
Speaker
No, no, it's fine.
Thematic Analysis of Research Findings
00:16:41
Speaker
I mean, we' we've got three ADHD people, so there's going to be tangents. um what is um What did you find? Tell me what you found in your and your current research.
00:16:53
Speaker
I've spoken with quite a lot. do you want to go for that Yeah, I guess I don't know if we should probably clarify, but in terms of methods within qualitative research in particular, what we did maybe. and So there there's obviously lots of different methods that come under qualitative. and So the particular method we used was um template thematic analysis.
00:17:13
Speaker
um So as the name kind of suggests, it's looking at what the kind of common themes are across participants responses. and and the template element is um that basically you create kind of a ah template of the the themes that you kind of expect that might come up based on previous research. And that's sort of the the first step.
00:17:34
Speaker
And then you go through and read through all of the participants' responses, familiarise yourself and with their responses, and then you kind of adapt the the the template that you make is something that's constantly changing. and So when... the So the response is feedback into the template itself?
00:18:00
Speaker
Yeah, exactly. And the idea is is that it allows you to have um a larger sample than perhaps doing some of the other kind of qualitative analyses and because you have that kind of baseline to start with.
00:18:17
Speaker
Although I think with us, I mean, we had... 28 participants, was 28? Yeah. um And with those open-ended questions, we were really kind of pleasantly surprised by how much people wrote.
00:18:29
Speaker
It was a substantial amount that people wrote, obviously, because it was and something that they really cared about. And I think that's something that came across kind of as I was reading through and then when we were working together on analysing it.
00:18:41
Speaker
um So the first step was that when it was just part of my kind of dissertation, I was doing that process of analyzing it and then having supervision meetings with Eve to kind of think about themes and things like that. um And then once it was completed as my dissertation, we then were like, okay, well, actually, we'd quite like to publish this.
00:19:07
Speaker
So then we went back and went through all of it all over again and did a kind of double, what's the word? Yeah. Yeah. So then I basically, after... Helena's dissertation, we were like, okay, there's so much information in here these participants have given us like they've like opened their souls to us and we read that from them and like i mean some of the responses really like bring you to tears in like happy ways and sad ways and like i felt very connected to the participants when i was reading them and some of them had very different experiences than myself um but i think that i still like i got it in a way that maybe someone who doesn't have late diagnosed adhd
00:19:46
Speaker
might not but um after helena's dissertation for her like qualification for undergrad i'm we kind of worked together and i then like went through it all myself and i'd already read through stuff and helped helena with a little bit with how she structured her themes for her dissertation but it's different when you're like okay, this is still her project for her dissertation. I don't want to step on things too much. um It still has to be her work. um And then afterwards, so then I went through it all and we restructured the themes a little bit so that we had like two full perspectives on it, two people who were really familiar with it. And we then kind of continued that like iterative process of letting the responses feed back into the structure of the themes. And then that's where then from there we got
00:20:34
Speaker
three main themes that um kind of came out of the um how did the participant answers.
Key Themes: Dismissals, Identity, and Grief
00:20:42
Speaker
and So the first theme was and dismissals, um which where we we found that a lot of the participants were felt dismissed by medical professionals and non-medical professionals. So maybe they tried to speak up for help or maybe people were like dismissing their experiences as not being real. They were maybe being dismissed as being lazy.
00:21:07
Speaker
and or their experiences might have been misattributed to other things. So they might have been attributed towards anxiety or depression. Hormones.
00:21:19
Speaker
Hormones. and But we found it it wasn't just in the clinical settings. It was also in the like non-clinical settings, so like family and friends and like that. And then we had the second theme, which was um to do with...
00:21:35
Speaker
self-identity so like before diagnosis they often felt like they didn't necessarily understand themselves um they felt different they weren't necessarily sure why they were feeling different um and then after diagnosis a lot more of them felt like they understood themselves better it's kind of finding this sense of self they were still feeling different to others but at least then they understood why and that they weren't just inherently a failure there was reasons for their experiences and kind of how they'd gone how they'd lived through the world and I mean our original sort of title for the paper was starting with that now now it makes sense yeah it's like now my life makes sense and a lot of the participants and communicated those
00:22:27
Speaker
that kind of sentiment. Yeah, that kind of sentiment. And then the final one was kind of grief. So we also had participants expressing that while they found it really helpful to have um now know themselves better, I guess, in a way through the diagnosis or through considering, oh, yeah, maybe that explains my whole life.
00:22:47
Speaker
We also then have this grief and theme, which was participants who were like, oh, but what if I had been diagnosed sooner? and or like, oh, maybe I could have, my life could have been different in a positive way. Most of them were talking in a positive way.
00:23:01
Speaker
about oh if I was diagnosed sooner then maybe I could have achieved these other things or reflecting back on parts of their life and kind of saying like oh it's a it's a shame that I didn't have that support there or oh maybe my ADHD was the reason why these things were so difficult um for them as they went through so I don't know if you if I Do you have anything to add to any of those themes?
00:23:26
Speaker
Yeah, I guess the thinking about the that sort of third one about kind of how their lives could have been. On the other side, there were also some participants.
00:23:37
Speaker
can't remember the exact numbers, but there was a couple of participants who were talking about actually how they thought that it either wouldn't have made a difference more that it might have been harder for them because of the kind of societal context.
00:23:51
Speaker
of their life at that point. I think that was, it was more the older participants within yeah, but within the demographic that kind of, that we're talking about that. And I guess they tended to be framed as they're not sure that it would have made a difference because society thought that only boys had ADHD then and they were a girl. Yeah, somebody had, yeah.
00:24:15
Speaker
yeah So it's not that having understood them in general, it seemed to not be that having them having not known that they had ADHD that would have not made a difference, but that like, for example, in a school context, it might not have improved their experience.
00:24:31
Speaker
But that's maybe, you know, maybe they were a child in the 80s, or maybe they were a child in the 70s. And so maybe that, but also, most of the participants who mentioned that there might not have been a change, or that there might have been a negative impact of having been diagnosed earlier, also at other points in their answers, described ways in which it would have helped them.
00:24:52
Speaker
So that was interesting, I think. Yeah, I think this was something we were kind of reflecting on yesterday, and that one of the key elements of this is basically what what participants it felt like they're saying is that there's there's one element, the the first being that things could have been easier and better for them if they'd had an earlier diagnosis.
00:25:17
Speaker
And also that there was still value to them being diagnosed late. And I think that really speaks to where we are currently system-wise in that, you know, lots of health boards are now no longer taking and referrals from people who are over a certain age and for i like to be assessed for ADHD.
00:25:38
Speaker
and Perhaps because they they they don't really necessarily see that actual so value in it at that point. You know, you I think this is one of the things that participants kind of said was, you know, that people said, oh, well, you've gotten this far.
00:25:52
Speaker
So yeah why would you use diagnosis now? it seemed quite, felt quite strongly by a lot of participants will actually know it. It still has value now. yeah and So, you know, for the people who have been missed, it's still valuable for them to have a diagnosis.
00:26:08
Speaker
And when we're thinking about going forward, it also and highlights the importance of improving kind of recognition of of ADHD when people are younger as well. Or like there was other participants who like were going back to the first theme were like dismissed by medical professions being like, oh, but you, you know, you've managed to go to university.
00:26:30
Speaker
So maybe you don't need that help. And so yeah actually these participants are saying like, it didn't matter that I like academically, maybe they managed to succeed, but the diagnosis was still helpful them in other ways or them saying like oh I had this really great partner who supported me through a lot of the ADHD but had I been diagnosed sooner maybe there would have been less pressure on them maybe things kind could have been easier in this way or that way.
00:26:56
Speaker
and But there was a positive benefit to late diagnosis and how did they articulate that benefit just to sort of spell that out?
Impact of Diagnosis on Self-Understanding and Mental Health
00:27:06
Speaker
I mean I can there's a lot of different quotes and I think probably some up quite well.
00:27:12
Speaker
m We can have a wee look. like you chat Yeah, so Helena's going to look up some specific quotes from our participants that maybe they, so we can put it in there. Yeah, we can put it in there.
00:27:22
Speaker
But also, I guess my impression overall is they were saying things like they could now they knew where they could get support. So they could get medical support.
00:27:34
Speaker
um They could maybe get some meds. they could get um they They could now explain their perspectives maybe better to their families. um There's some really emotional ones where people were, you know, they're talking about being pretty depressed or anxious and that these and they've now felt those symptoms of depression or anxiety have like alleviated since having the diagnosis. So their mental health is better. Their sense of an identity is better.
00:28:07
Speaker
and They're less insecure. and before diagnosis, we have them a lot of people mentioning things like shame and embarrassment for like who they are. And then that at least now they're maybe able to find the community in which they're a part of and like having that label for them was helpful in that way that they could be like, oh, these other people have ADHD.
00:28:30
Speaker
You can maybe go to an ADHD support group, that kind of thing. Do you want to? Yeah. Yeah. If I'm one that, oh my goodness, my, my voice is a bit.
00:28:42
Speaker
and What you were just speaking to there about kind of their anxiety and sort of mental health, poor mental health being alleviated by diagnosis, there was one there.
00:28:53
Speaker
So we, for context, our participants, we we named them, we gave them pseudonyms. um And I think part of the reason for that is that when you're reading these quotes from people, it feels really important that they have a name and that they're they're read as a person, that they're not just a number, participant one or two. So this is... yeah from one of our participants that we named Kirsty.
00:29:19
Speaker
and It was put to be strongly and more than once by professionals in the NHS that I was simply anxious or depressed that it wasn't ADHD. It was a huge of indication that my depression and anxiety got much better when I was diagnosed with and medicated for ADHD.
00:29:35
Speaker
and So yes that's that kind of highlights that sort of how actually having the diagnosis in and of itself what was previously ah and labeled as anxiety or depression, the core roots of it was really eight on unsupported and undiagnosed ADHD. alllan One of the things that I've been thinking about while you've been talking is is to what extent the diagnosis itself is the thing that's liberating or therapeutic versus access to treatment and let's say
00:30:12
Speaker
the thing that is immediately ah ah available if you have an ADHD diagnosis that's not available if you don't have an ADHD diagnosis is medication. So to what extent did access to medication mediate some of the benefits of diagnosis?
00:30:25
Speaker
Or to what extent is that bit of a side issue for people? what What's the relationship? How do people talk about medication in your ah data set? I suppose it was something that was mentioned by, you know, more than one participant, but the overarching concern thing that it seemed that people were communicating was more to do with the having that missing puzzle piece of I know I understand myself yeah now I can look at it from an ADHD lens when they're thinking about their previous experiences of say for example like struggling with school work or like focusing on something it was really really difficult and a lot of that when you don't have the the reason for that becomes to do with kind of criticizing yourself
00:31:10
Speaker
a lot of self-criticism. So once they had the lens of ADHD to look back on that, it's it's a relief. And I think that's something that I know myself, I've experienced as well of like, oh, now I know why that was hard. And it wasn't because, you know, I was, I just couldn't focus. I was being lazy or any of those kinds of things. It's now I see why that was and it wasn't, it isn't something to blame blame myself for. And i think that was a big part of it. medication and access and all of those things are certainly an element of it that people spoke about, but I don't know what you think. I think that my impression from the responses that medication and like direct support for ADHD were more often talked about through the lens of the grief, like maybe I could have had this sooner, but in terms of this, we had a whole
00:32:02
Speaker
theme on self-identity and like that theme was split in into kind of like the sense of finding the sense of self afterwards felt a lot more salient in the responses like I think it was mentioned a lot more this kind of now I understand myself now I don't need to be as critical of myself and I think that that understanding yourself and like that giving that context to who you are like
00:32:31
Speaker
like It seemed to be what was kind of communicated the most in a lot of the responses. and I mean, another one, I'm just randomly ranting off them quotes, but another one and from Joanna and was, my diagnosed help my diagnosis helped me make peace with my past choices and mistakes.
00:32:54
Speaker
And now I know why I behaved in certain ways throughout my childhood and adolescence. And that has been a real revelation to me. Yeah, I think it's this, we and I think this quote does a good example of someone now using this to judge themselves less.
00:33:09
Speaker
and yeah like you They were not inherently just a bad person. There's a kind of forgiveness there, there? Yeah, yeah. And yeah, forgiving yourself for your past and digressions or...
00:33:21
Speaker
and maybe things that they are not so proud of, but they're like, oh, well, that explains why, you know, I was dealing with something that I didn't know I was dealing with. And maybe that was their way of getting through life.
00:33:36
Speaker
and And I think that's something we see a lot in, you know, a lot of the things that people are saying online as well, within but social media posts as well.
Clinical and Social Validation of ADHD Narratives
00:33:46
Speaker
Like once we come kind of gone through process of,
00:33:52
Speaker
reading through all these responses and looking at TikTok or Instagram and things and what people are saying they actually link up quite well and yeah I guess the thing that it when I think about where this research kind of sits it feels like it almost sits within the middle of the clinical research field and the lived experience that people are sharing online as well. It kind of almost feels like the bridge between those two things. Yeah. but This is exactly what people are saying and sharing online.
00:34:24
Speaker
And it maybe doesn't get given the same validity when it's kind of presented in that way to, you know, policymakers or and people within the clinical fields. And But it yeah, it feels like it's somewhere kind of in Yeah, it's something I hadn't realized at the time. It was after we'd kind of got our themes and everything. Like if you look at, you know, on TikTok re on like tiktok and like Instagram Reels, like people are expressing a lot of the similar sentiments in terms of firsthand experiences as what our participants were saying.
00:34:57
Speaker
um and But they've also seen like interviews with clinicians. And I've seen, i think I've made a post on like Blue Sky or Twitter about this saying that like, actually since we did the since we you know had our results are written up the paper like i've seen like social media adhders mention and talk about these things like revelation and like grieving the previous like life that they potentially could have had and what thing that i'm really proud of this paper about i'm proud of what we've done with this paper is that we've the experiences that our participants have expressed
00:35:33
Speaker
are now published in a scientific journal which can be pointed to towards, like, this is legit, this is real experiences, which sometimes the, like, social media stuff is not necessarily given that respect.
00:35:46
Speaker
And also what's been really nice since publishing it is we've had... clinicians reach out and comment and say like, hey, this is super relevant for a client I have now, like I'm going to tell them about this research. And we've also had people who have ADHD, who've been diagnosed with ADHD being like, oh, my God, now I don't feel so alone with this.
00:36:07
Speaker
And that's been I mean, I've got goosebumps just like talking about that just now. But like, that like The response that we've been getting from sharing the paper and the research is people saying like, hey, we feel validated from hearing these perspectives. yeah I'm not alone.
00:36:21
Speaker
But also that clinicians are directly saying like, this is also what we're hearing and we find this useful. So thank you. And like, that's really nice. right more And much as much as we obviously something that somebody's own story posted on Instagram or TikTok or something is valid.
00:36:39
Speaker
it is so powerful to have it published in a journal and having these power these these stories given that kind of heft, that weight that, i you know, a and a journal will we'll give it, you know, whatever the impact factor of the journal. I haven't looked up the impact factor of whatever the scientific reports. And I think the point there for people who are maybe less...
00:37:01
Speaker
in like, I'm so immersed in the science, in academia. and But when we're talking about these journals, they're peer reviewed journals. So what that means is that you've got, before it's published, there's other experts in the field who are reviewing these papers, they're looking through the papers, they're giving the authors feedback.
00:37:20
Speaker
And then before it's basically, it's kind of like, if it's in these peer reviewed journals, it's got this tick mark of other experts in the field. And so that also, i think, is nice, potentially, for policymakers, because they can put more trust in it and they can put more faith in it. And I think that that's kind of when we talk about these impact factors or like the gravitas that's like potentially coming with the benefit of having it in a published article and not not just on social media. I think that's what I think but i hope means that we can get some of these perspectives taken a bit more seriously.
00:37:57
Speaker
and I've got a couple of things that have kind of ah are on my mind sort of coming out of that. Do you have any feedback of how it felt to your participants?
00:38:08
Speaker
How the process of participating in your research felt to them? Was there an opportunity for catharsis? was it was it was did did they Did they comment at at all about, oh, I've never really thought about that and this is how I think?
00:38:23
Speaker
I get goosebumps thinking about about that, actually. you know, we read through those responses like 100,000 times. And even now, when I read through them, it still, it hits for sure. And but I think the last, we kind of had a ah final section just asking if there was anything else they kind of wanted to say. And we did have some responses from participants saying that it that process of reflecting upon it was was valuable and which was really lovely to hear yeah some i think they said like I never actually thought about it like that before but yeah and like participants saying like thank you for doing the research and I think I mean we didn't explicitly we've not like explicitly counted how many people did that but there was definitely a couple who were like I've
00:39:09
Speaker
seem to be expressing kind of catharsis in being able to express that perspective. And and I guess our hope more than anything is that we did their stories justice.
00:39:21
Speaker
yeah yeah yeah and if they' If they happen to be listening to this and we're like, hang on a sec, I think I was part of this. and Yeah, I really hope that they feel seen.
00:39:34
Speaker
and yeah by how things were shared. I'm also thinking about the kind of the idea of sense making in trauma because i don't know that we'd specifically talk about trauma in terms of these experiences of dismissal but there's I mean trauma is ah an elastic concept of course but know sense making is an important part of moving on from traumatic experiences and so perhaps there's a sense making here as well not saying this is a therapeutic intervention you're making, but I think there's a power there, isn't there, of of making sense of what's happened to you.
00:40:07
Speaker
Yeah, I definitely think so. I mean, if everyone processes things differently and some people might get more from it than others, but I i definitely, I mean, that what you just said there tracks for me, you know people thinking about it and talking about it and that sense-making can potentially help heal some of that trauma and that they might have experienced or felt from, you know, being dismissed or like almost like gaslighted and about things through their whole life.
Proposals for Future Research and Systemic Changes
00:40:38
Speaker
yeah um And I think for people reading it as well, you know, i there's there's been people I've, you know, friends and colleagues and things as well who have I've shared the paper with who are also ADHD years and having them kind of respond and saying that, wow, like I feel really seen in what was written.
00:40:58
Speaker
was was really amazing. And I think, yeah, that being, seeing yourself in research and seeing yourself in these reports, I think is something that and can also be, yeah, very valuable.
00:41:10
Speaker
Also a great follow-up study it would be to like, yeah, give people the same questionnaire and have them, you know, do some track, see how they felt before and how they felt afterwards and have their trauma scores go down. I mean, that's ah ah be a great study.
00:41:24
Speaker
There's a way of mayors looking into a way of testing it. For another time, maybe. i What about, imp let's talk about, let's move on to implications. What would you say your findings mean for clinicians, people looking after people with ADHD, teachers, you know, people who are around the ADHDers?
00:41:47
Speaker
What would your message be to them on the back of your data? i think, and yeah, in terms of Clinicians in particular, I mean, a lot of what was spoken about was people going to their GPs and saying, these is this is what I'm struggling with and being dismissed in variety of different ways, whether that's saying that it's attributing it to something else or and whether that's kind of minimising how challenging it's been for them. And I guess the thing that really comes across is that there's a lack of kind of differential diagnosis, especially,
00:42:24
Speaker
among this demographic. Not necessarily a lack, but like a not enough of it. Yeah. Yeah. um So when people are coming and saying, I'm feeling anxious about this, this is the thing I'm finding difficult.
00:42:38
Speaker
It's kind of quite quickly being attributed to anxiety or depression when actually it's really important to make sure that we're ruling out other options as well.
00:42:49
Speaker
him So that I think that's an element. And also There's a lot of misconceptions around ADHD in terms of ah prevalence among women, how it presents. Our diagnostic criteria is inherently biased towards, hundreds of ah you know, male sample. So I think it's really important for clinicians to bear that in mind when they're going through assessments or they're they're trying to kind of recognize, they're trying to identify whether this is ADHD or not to think, oh, well, actually, it might be presenting in a different way than the diagnostic manuals might indicate.
00:43:29
Speaker
I mean, the word I keep thinking of is curiosity. um I think a lack of curiosity, because, I mean, in a sense, you know, kind of arguing slightly from demo's our devil's advocate point of view, somebody comes to you and says they're anxious, treating that as an anxiety condition is a reasonable first step, but it's just if they don't they come back to you and they're like well, I'm still feeling anxious and I've also got these other symptoms.
00:43:52
Speaker
Not being curious about what might be also going on for that person, because it may well be be that person has got anxiety and could be could have benefit from from managing their anxiety. But it it's it's it's ah it's a lack of it is just a lack of curiosity, which is bred by how busy people are and how stressed people are fine.
00:44:10
Speaker
but But that, I think, is that's always struck me as a big part of the problem with these sort of dismissals. I 100% like I'm so on board with that. Like I think that like, I think that having, I have a lot of neurodivergent colleagues and friends and neurodivergent myself and like, you know, I've also been doing this research, but like, I think it could be helpful to also consider anxiety as a symptom of something else.
00:44:38
Speaker
um And I think that like, like, you know, I've not done a study on this, but like there was some,
00:44:47
Speaker
Well, I mean, we have done a study. Like there are some of the participants who've come up and said, like, I think that actually i had the anxiety or depression symptoms because I wasn't diagnosed. yeah and that like And then like, you know, there's friends and family and colleagues that I've spoken to who have said, no, I think I am depressed and anxious because I didn't have that anxiety, because I wasn't diagnosed or maybe because I have it, it's not necessarily about the diagnosis in that context. Like maybe it's like, maybe the anxiety is a symptom of and the neurodivergence there rather than it being like, you know, a specific phobia, you know, that, that, you know, but phobias create anxiety. And we know that anxiety is also a part of OCD, for example.
00:45:33
Speaker
and And that like a lot of, OCD tendencies can be driven by anxiety, but like people are, ah i feel like it's spoken more about in the context of some um diagnoses like OCD, but then if it's not being presented with the, if there's not a clear source, like a clear source for the anxiety or depression symptoms, I think it would be a really, i think it's, it's,
00:46:00
Speaker
if you have to have these tick boxes to make things more efficient in a system, which clinicians are under a lot of time pressure and there's not, you know, there's a lot of financial pressures in the system, add a couple of tick boxes to the bottom of that list. Like what might be causing this anxiety? Who could it be some undiagnosed ADHD or and
00:46:24
Speaker
undiagnosed autism or something like that. And I think that that's a way in which like, like you say, like there, maybe when they come back the second time, you can consider it there. But also we had participants who were literally expressing, I think I have ADHD. And even those participants, there's no excuse for that. Yeah. yeah At that point, you know, you have people who've been in seeing psychiatrists or like mental health nurses and GPs, and they've been looking and trying to say, like, can you look for something else?
00:46:55
Speaker
And they, they, some of the participants are still saying they were in all of the people in our study did end up getting diagnosed at some point, but yeah like my definition point in their journey, there is a lot of expressions of people not being necessarily taken seriously when they felt, I mean, they, they, they felt like they were being explicit, more explicit about it.
00:47:15
Speaker
And I suppose we know as well that this is not like a kind of, it's not an individual clinician issue. It's, it's a structural issue. It's that clinicians are being trained is is filling the script actually. yeah It's, you know, the, as I was saying, the diagnostic criteria, the research that's out there, that impacts clinical understanding and it also impacts societal understanding and this all becomes a cycle.
00:47:43
Speaker
and So, you know, when they're saying that, oh, well, it's not ADHD, a clinician is saying that it's because, well, with the information that they've been given, it's not ADHD.
00:47:54
Speaker
But it's just because actually they're- doesn't fit what they've been told ADHD is. Yeah, I think typical to be very generous. I think there's like, I've forgotten the name of it, but there's a standard like ADHD, like screening questionnaire that I'm like, if I was filling in that screening questionnaire, I don't even know that I'd reach the, like, I think this questionnaire, it's, if you get a, if you pass the boundary on it, then you're likely to have ADHD.
00:48:21
Speaker
But if you're not reaching that boundary, I think there's a lot of false negatives in there. Right. So like, myself and my ADHD experiences I think I'm either borderline or under the di like the like you worried about threshold m but then there's other questionnaires which look at ADHD from other perspectives and actually one of my favorite podcast episodes that you guys have done was looking at those other symptoms of ADHD that people are feeling that aren't necessarily in the diagnostic criteria so talking about oh yes yeah yeah I'm so sorry I've forgotten the name of who did it but I loved it and I've I sent it i I've also forgotten it but I will find it don't worry I yes this is what it's link in the show notes as they say like on daily basis this is it's not just someone being forgetful and like thinking about ADHD more from this perspective of like
00:49:13
Speaker
difficulties with regulating executive functions and those kind of like screening questionnaires like for me like i like i'm like yeah bang bang bang just come up super high on them and so i think that this also may be like something that might um i think that the thinking of it that regulating executive function side of things from my understanding, seems to pick up on more of these diverse presentations of ADHD, which aren't just this like stereotypical boy disrupting the classroom.
00:49:48
Speaker
and Yeah. Yeah. Okay. Can we quickly talk about policy?
The Broad Value of ADHD Diagnosis
00:49:53
Speaker
Because because i think I think it was Helen, I think you talked about um some of the policies that have been put in place by, I think it was Coventry in Warwickshire in England.
00:50:04
Speaker
who who won't take a referral for anyone over 25 for ADHD. So from your perspective, what are the implications? And the other thing that's out there, I think, might need edit this a bit.
00:50:19
Speaker
um The other thing that's out there is this idea that you don't need a diagnosis until you're bad enough to need medication. that's something that's That's something that's being considered actively, I think, in NHS England at the moment.
00:50:32
Speaker
that we delay diagnosis until somebody is bad enough. So the people who are functioning okay, they just get a bit of help, but not a diagnosis. They get reasonable you know adjustments at school or whatever, um but they don't get a diagnosis. the Diagnosis is reserved for those who are bad enough to need medication. And what I wonder what you think of those sort two ideas that are kind of floating around the policy world.
00:50:58
Speaker
Yeah, I suppose um I'm less familiar with kind of England side of things because I'm based in Scotland. and But I am aware that there are certain health boards, and I won't say particular in case I'm wrong, him but I know that there are those kinds of similar policies being put in place of if you're over certain age. England is not the world, that's true.
00:51:20
Speaker
Well, it's just more, I'm not so familiar with it. and But, ah well, interestingly, what you were saying about kind of adjustments being put in um in place at school and that kind of thing. um I'm actually doing a bit of coursework on this at the moment.
00:51:34
Speaker
and Because although according to kind of policies in Scotland, that's like GERFEC, getting it right for every child. i know it's a different one in England, but those policies around, you know, you don't need to a diagnosis to be able to access support and have those adjustments. It should be needs-based.
00:51:53
Speaker
Although those are in place, the reality is, is that a lot of schools are ah not following that necessarily, that actually, realistically, you do need a diagnosis for schools to be providing support. and So on paper, those policies set to say that, but the reality is not necessarily that. and And when it comes to the the other element of you know needing to have bad enough ADHD in order to access a diagnosis, I think, I mean, what our participants are saying there really highlights the fact that
00:52:26
Speaker
and accessing medication is only an element of all of this. Yeah, that actually the diagnosis in and of itself also helps them to make sense of their experience. And it does also allow them to access other things too. Medication is one of them, but that also might be um adjustments at work as well.
00:52:45
Speaker
Similarly, although perhaps technically people don't require a diagnosis, the reality is, is in a lot of cases they do. Practically they do, yeah. Yeah, disability payment, things like that as well.
00:52:56
Speaker
And so, and I think also that kind of measurement of ADHD being bad enough is is a particular issue around this too.
00:53:07
Speaker
Yeah, and I think that's what a lot of participants were talking about is that, okay, well, externally societally succeeded in life, right? There's people who, you know, got all their degrees and and we're sitting here as people who have degrees and ah academically succeeded and have jobs and all of that kind of thing.
00:53:26
Speaker
But that's only one element of our lives. You know, just because somebody societally succeeds, that doesn't mean that the impact of ADHD is not significant. You know, it it impacts people's relationships, impacts their self-esteem, impacts their mental health.
00:53:42
Speaker
and And also at some point. There's also people who, you know, you you succeed and you do well, and then you crash and burn. and And I think, you know, my mum would quite quite honestly say the same thing. You know, she's kind of discovering that perhaps she has ADHD and she has done amazingly throughout her life. Somebody who's incredibly successful and has worked really hard.
00:54:03
Speaker
and But, you know, when we think about the impact of hormones as women are getting older as well, and, you know, having children and life becomes harder, it can then become difficult to to cope with ADHD in the same way because you've managed to get through it and push through. But just because people have been able to push through without a diagnosis doesn't mean that they should have to.
00:54:26
Speaker
I think also, like, we've not mentioned it explicitly here. We've mentioned mental health and stuff like that. But there is really awful statistics of, like, suicide rates. Yeah, absolutely. Yeah.
00:54:37
Speaker
in people with ADHD, they're more likely to commit suicide. And you, it doesn't, you don't have to have, like there's preventative measures that you can take. And it would be nice if people would think about this from a preventative perspective. Like there's stuff um about like physical health, like how to keep your, you know, heart healthy, how to,
00:55:05
Speaker
keep other parts of your body healthy. And if you can think about this from a a preventative medicine, like medicine perspective, you could prevent a lot of people getting CPTSD.
00:55:16
Speaker
You can prevent people having to be treated for anxiety and depression their whole lives. You can prevent people needing to go to like therapy and stuff like that. If you can potentially help them understand themselves and get that support sooner. And I think that also for myself, like it breaks my heart when I see these age limitations.
00:55:38
Speaker
I got diagnosed at the age of 28, right? right I found it completely changed my life. And I was saying to Helena yesterday, if I didn't have the ADHD, like I wasn't suicidal, but if I didn't have the ADHD diagnosis and the support that comes with that, both like the disability adjustments at work, but also like the medication, I don't think I could have done my previous job. I think I would have lost my job.
00:56:03
Speaker
i Or I would have had to go on like long-term sick leave. And like, I'm just an N of one, but I see and I hear it across places. And I think that that's something that like, it it makes me really sad that it's like, you have to suffer more to get to the place that's that you need that help. And I also think that it brings in like other kind of like,
00:56:27
Speaker
privilege stuff that you have to consider in that sense. It's just like, okay, well, someone might be struggling more, but they have a family member's house that they can live at so that they're able to, you know, they're being going to be able to live and like have food on their table.
00:56:43
Speaker
irrespective of what, even if their personal struggles are that bad, but other people to get to that, you know, whatever this border, whatever this line is that you have to get to, to get the support other people's like struggles might be very different. Not everyone has a friend or a family's couch that they can stay on when they're, you know, when they're still in a waiting line to get support for different things. And I think that like that kind of dive,
00:57:09
Speaker
like thinking of people's life experiences in diverse ways is so important in that. And, you know, it makes me angry and it makes me upset because I i i am one of those people whose life would be radically different.
00:57:22
Speaker
yeah if if that If that policy was in place. m And, you know, we also had multiple, again, something that's not come up, we had multiple participants who ended up going for private diagnoses um in our study.
00:57:36
Speaker
oh yeah. And there's, you know, like, again, personal story, but like I was in the, u the, I was in England and I was on the right to choose wait lists for 12 months. And then I moved to Scotland and I had to start completely from scratch to try and get my diagnosis again.
00:57:55
Speaker
I was in an extremely privileged situation in which I had the option to go for a private diagnosis and the wait list was shorter, but I still had to wait. But like, not everyone has that privilege. And I think that it's really,
00:58:10
Speaker
I understand why you when a system is under a lot of pressure, that you have to prioritize some people in some contexts. And I get that a lot of people are making difficult decisions about how to support people within, you know, health crises and like the money that's around. But I think that something that I wish was taken more seriously was thinking about things in a preventative way. Okay, but actually, if you gave that person the support here, maybe they wouldn't end up needing the support from those higher alcoholics.
00:58:44
Speaker
There's more alcoholics who have ADHD. like you know There was papers that were specifically, I think some of them that are in our introduction about how undiagnosed ADHD in particular, and and those in that demographic, people are more likely to have mental health issues and and substance misuse and all of that kind of thing as well. Actually, the fact that they were undiagnosed made it this yes even more confusing. If you to think about it from the perspective of, okay, how much money a year does the and NHS spend on supporting people who have, you know, experienced substance misuse and like the effects on their body of alcohol misuse for years or substance misuse for years, you're more likely to smoke if you have ADHD.
00:59:28
Speaker
And if people don't have these, I think that like, it's a I think that people often disconnect these things and keep them separate. And I think that it's something that really impacts people's lives on a daily basis. and impacts their health in potentially loads of ways and society in loads of ways that if we're only ever waiting until they're bad enough it's like well how what do you count as bad enough because are alcoholics bad enough or is it only when they're suicidal or is it only when they can't hold a job because someone might be holding a job down but then they you know all their friendships and their romantic relationships fall apart or their relationships with their family and i think that like
01:00:05
Speaker
Yeah, sorry. i I'm just very passionate. i i think I think the key point that you've made, though, is that this is an instance of prevention. And we've had, I mean, I know it's only England, but the NHS 10-year plans has come out and it's a strong emphasis on prevention.
01:00:20
Speaker
Again, every every time they come and produce, and it's true in Scotland, it's true in every health system, they always emphasise prevention. But when they they tend to talk about prevention as, oh, let's give everybody...
01:00:31
Speaker
some information about weight loss or let's stop let's tell people that smoking is bad um not let's make sure people understand their brains and why their brains work the way that they do and make the diagnosis that you need to make this is a really great point i think from an adhd you know as a trustee of an a national adhd charity one of the things that i we like to do is as a charity is to put the case for adhd diagnosis being a sound investment in preventative medicine and policy and policy terms simply even if you strip away the emotion you strip away the humanity and you just talk in in in in in financial terms it's a sound investment i i 100% like yeah i'm on board like even if you like
01:01:19
Speaker
we don't need to strip away the humanity, but even if you did, you can you get to these people who all they care about is money and numbers on that spreadsheet and where they're saving money.
01:01:31
Speaker
I genuinely believe that it's still, it's a sound argument. And like, like you say, i think it is a good place to try and help some preventative.
Community Engagement and Open Access Research
01:01:45
Speaker
Whichever way you look at this, whichever angle you look at it, it seems pretty clear that, um yeah, the diagnosis is and something that can impact people individually and also on a structural level.
01:01:58
Speaker
really Let's move on to the impact because I note that um your paper is open access, I think, at least to me, I think. Yeah, anyone can access it. Which is fantastic. so So people can come and can can have it.
01:02:13
Speaker
It's always a bit awkward when I'm posting to a, to ah a paper that's not but a lot of the listeners wouldn't actually be able to get the full text of so it's great to get the full text um but what it what do you think people will the implications of your work for adhd is themselves i mean maybe they can answer them that themselves because they can read it and then but you know what i mean i think it's what we we're saying earlier about people being seen reading this reading these experiences.
01:02:44
Speaker
you know Even if you scrap all the background, you scrap all the methods and you just read the results and those quotes, actually just reading that is, I think, really validating to hear yourselves in those experiences. I think for us, that was the case as we're reading them. To be like, wow, I i see myself in that.
01:03:04
Speaker
and And also, I think for... Those who maybe aren't sure whether ADHD is the missing puzzle piece and they're kind of exploring and trying to figure out this be, I think actually just reading those and being like, wait, hang on, I really relate with this allows people to say, OK, I'm going to look into this a little bit more as well or sharing it with other people, you know, whether that's friends and family who they feel like maybe du you don't quite get it.
01:03:32
Speaker
um This is what I'm going through. can be really helpful to have that to to share with other people. And again, we're talking about the kind of the the weight and like validity that something holds as well. If you're sharing with somebody else, when it's in that format can be really helpful.
01:03:47
Speaker
And they not say that should be the case, you know, people's individual experiences should be held as just as valid, but the reality is that is a reality isn't it yeah yeah and sometimes having that evidence to back you up is is really helpful um and i think yeah we touched on it we've definitely touched on it at other parts of this conversation as well but um i think yeah we literally have had folk reach out and say Thank you. Yeah, exactly. like I relate to this. And not everyone's going to relate to everything, right? You might have ADHD and you might read this paper and it might not reflect your experience.
01:04:20
Speaker
and And that's also valid. and But the feedback that we've had, i don't know, at least the feedback that I've received on it is... I've had people saying like, do you mind if I share your paper? I'm like, yes, please. I'm going to share this with my ADHD support group. And I'm like, is that OK? I'm like, yes, please do. And like, um I think you also made a nice point there. Like you can you can share it with family and friends who like maybe it hits different if they, you know, if they're seeing this is not just an individual. It's not just me.
01:04:50
Speaker
um it's not just my one, these are other folk who are saying a similar thing as the person I know, then okay, yeah, maybe I should take them more seriously. And again, a great point, like, if you don't have time to read the whole paper, if it's not for you, like the, please do if you if you want to, if you're interested, if you have time, but the results, I think, from the point at which we're talking about explain like you know covering what we found in the written responses i think helpful yeah and you you lay it out you lay it out very clearly in the paper you don't yes you you can put yeah as a sort of lay person you can probably skip maybe skip the method section and just get to some that's absolutely fine and there's also yes resources online as well so we've added some the paper could only be so long we didn't want to like kind of overwhelm people with loads and loads of quotes if they weren't interested oh okay the paper as well to
01:05:45
Speaker
OSF which is the open science framework um on there we've also put more quotes in case people want to read a bit more about what some of the other participants said. If get the OSF data and I've got the OSF link here now fine so I'll post that one fabulous that's really helpful. They can also find little bit more on there. Do a deep dive.
01:06:05
Speaker
Yeah. Great so I know that you've both you've collaborated at St Andrews on this and you're both kind of moved on to to greater things. So a question to both of you individually then, although you may may well collaborate, I'm sure.
01:06:23
Speaker
um What is your next question? What does this work stimulate you to want to to ask next? Well, we are in fact collaborating. That's a relief, getting the band back together. Yeah, she can't get rid of me.
01:06:41
Speaker
Yeah, so we we have a follow up study that we've been doing and actually ADHD UK helped advertise some of that. So thank you to ADHD for that. ADHD UK for that.
01:06:52
Speaker
And we have a follow up study in which we are um It's more of a numbers study, but basically like asking people to say like, was was your experience? How did and like taking some of the results from this study saying like, OK, well, did you experience things like that? Trying to get a bigger sample size and we're hopefully going to compare, you know, for people who were diagnosed as a child versus people who were diagnosed as an adult, how they experience things differently.
01:07:20
Speaker
m For men, did they experience, you know, if um a late diagnosed man, is he, you know, saying that he's experienced similar things as the late diagnosed woman? I'm so interested in that question because, yeah. I help i think it's probably the case. Like, and that's my my my suspicion is that, you know,
01:07:39
Speaker
I think the reason we focused on women here is because women are more often late diagnosed. Absolutely, yeah. to I think that any anyone of any gender, if they're diagnosed late, I would not be surprised at all if they were experiencing a lot of the similar things that we But i think there may be differences as well due to the but the way that men are in culture to think about themselves.
01:07:59
Speaker
Hopefully we'll be able to look a little bit of that in intersectionality stuff. um And I think what was mentioning way at the start there about and gathering participants as well you know like we've started off by advertising in groups and you know ADHD UK kindly advertised for us but think we're also looking to hopefully and based on the demographic that we have see okay which groups actually are kind of underrepresented and how can we and gather more participants in that area so that it's a more
01:08:31
Speaker
and kind of representative sample.
Future Directions: Diverse Demographic Studies
01:08:34
Speaker
Or maybe not even representative sample because, but more diverse sample, I guess. yeah So like we're hoping like we are going to also now use Prolific, what we used for the study we've been talking about, to target a lot of specific demographics who are underrepresented in the responses that we got from people that we advertise via social media. Yeah, I mean, the notable one probably ethnicity, isn't it, that sort really jumps out.
01:09:06
Speaker
Yeah, that's been really exciting to see how many, we've I mean, we have quite a lot of participants at this point. and So the bigger, the better statistics and things like that. But and yeah. Great. You'll come and talk to us when that's ready.
01:09:20
Speaker
Yeah. and Come back. Fantastic. Great news. ah Was there anything else you wanted to reflect on or or say before we wrap up this episode?
01:09:32
Speaker
You particularly, it's not, that's not one of my standard questions. I'm sorry if it's a curveball, but you've both got such passion for this and you've often thought so deeply about this issue that I just wondered if there's something that's been germinating in your brain that hasn't come up yet that you just want to close it off with.
01:09:48
Speaker
um I think I've kind of like,
01:09:54
Speaker
that was, a so one thing we spoke about yesterday is that and something that Helena's brought up yesterday was the um sometimes the people in the medical system might decide to make the choice for someone and whether they won't think that they might have ADHD or not. and But it's important to give people the opportunity and chance to help them if they need that. So some of the reasoning that people give for saying that we should give have this cut off for this age because it's most important for people under that age, people above that age, they might not want to get diagnosed.
01:10:34
Speaker
You can say they might not want to, but if but then they won't, right? People aren't forced to be going out there to get a diagnosis if they think that they have ADHD. I know people who say, I think I have ADHD, but I'm okay with not being diagnosed.
01:10:48
Speaker
But if the system is putting that restriction on the people who do think that it would be a big help for them, I think that's really sad. And I think that people should be allowed to have that um that opportunity.
01:11:00
Speaker
Yeah, the right to make that decision themselves. I think there's a lot of behind the scenes conversations sometimes within the clinical field about you know it might get brought up as a possibility that adhd is is an element of whatever's going on for that person but the decision might be made for them i actually don't think it's going to be beneficial no point bringing it up but yeah it's really important for them to be able to make that choice themselves yeah it's not really a clinician's decision to make i would say and i think there was there's one thing um there was a quote that helena that we haven't read out yet that i think is a really
01:11:37
Speaker
It's one of my favourite quotes from all of the participants because I think that she covers a lot of kind of some of the themes that we've mentioned here. And I think it might be nice to end on. Let's do that.
01:11:49
Speaker
that point Excellent. The words from one of the participants themselves. Perfect. Let me just to get it up. and So this was one of our participants, Heather.
01:12:05
Speaker
and Let me drink some water again, actually. sorry Losing my voice, it's not a great day to do that.
01:12:16
Speaker
Everything clicked into place when I was diagnosed at 48. I'm more content now than I've been my entire life. Occasionally I get angry that I've been seeing psychologists, GPs and psychiatrists since I was around five to ten years old and no one had spotted it before.
01:12:32
Speaker
That's 40 years of living with guilt and shame about who I was. and without access to the information that has since allowed me to understand myself and make the accommodations I need to thrive. It all could have been avoided.
01:12:44
Speaker
i don't let myself dwell on that though. Life looks good from here on in. One big regret, however, is that I never had children. i love all my friends' kids, but I could never see how I could be a mother myself.
01:12:56
Speaker
I was too disorganized, exhausted, and emotionally unstable. As I was diagnosed at 48, it is now too late. I worry that I'll be facing a very lonely old age.
01:13:08
Speaker
But again, i don't allow myself to dwell on that.
01:13:13
Speaker
That's amazing. Thank you. that' Wow, I wasn't expecting that to be quite as moving as it was.
Conclusion and Listener Engagement
01:13:20
Speaker
um it sure with me um yeah sam Shall we leave it there?
01:13:25
Speaker
Thank you so much for joining us today. How would somebody reach out to one or both of you to ask about the research or sort of say thank you all.
01:13:38
Speaker
You can reach out to me on Blue Sky, and which is the the new twitter by Twitter. I do also have X, but I don't check it very often. But you can reach out to me on Blue Sky. I'm at Chimpanzee, because I also do research with primates as well. i my um My email address is on the paper, so you'll be able to find email address there as well.
01:14:04
Speaker
And I also finally set up Blue Sky as well because of because the paper being out. And and i am I've got a very long surname, but hkobayashiwood.bluesky.social.
01:14:22
Speaker
Good. I will tag you both when i when he didn't when this comes out. Well, Eve and Helena, thank you so much for coming. It's been an amazing tour through some amazing work. And I hope to see you again on the pod.
01:14:34
Speaker
you so much for having us all right thanks very much okay um i mean that quote from helena was just devastating uh i'm yeah it's the closest i've come to crying while recording a um episode uh it was really quite something um
01:14:55
Speaker
Yeah. So and just such incredible interviewees, please keep an eye on them. And Blue Sky is also, haven't really come up recently up until now, but it's a really, it's actually really nice.
01:15:07
Speaker
um A little bit of an echo chamber, but it's a really good, inclusive community. And and there is quite a few ADHD people around and there are things like starter packs if you want to. kind of follow a load of people in the ADHD world so it's probably quite a good place for listeners of this podcast.
01:15:25
Speaker
um Apologies that the audio quality was not what I would hope for um during either recording or the intro. um I had completely forgotten how bad that particular headset was.
01:15:39
Speaker
um and i will not use it again for this purposes uh sorry about that anyway ah hopefully another episode in a couple of weeks with tess herself uh and then definitely a break uh for it's certainly from tess and from me a little bit But we have a nice special treat over the summer. So don't sort of don't give up on us.
01:16:05
Speaker
We have another way of giving you top quality content. um All right. I think that'll look that'll do. Quite a long one today. But well worth it. I think you'll agree. Please go to Facebook.
01:16:17
Speaker
Or you know any of the social medias. But ah Facebook. Our Facebook group is probably the um best place to see what we're up to.
01:16:30
Speaker
All right, I'll speak to later. Bye.