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Episode 7 with Cliodhna O'Connor and Lucy McGill (Science episode)
365 Plays11 days ago
We are delighted to be joined by two researchers from Trinity College Dublin who have taken a systematic view of the data on adult ADHD diagnosis, a subject close to all our hearts!
It's a wide-ranging chat with a great celebratory moment at the end!
Their paper, for those who want to dig in, is here: https://pubmed.ncbi.nlm.nih.gov/42216788/
The rumpelstiltskin paper is also open access: https://pmc.ncbi.nlm.nih.gov/articles/PMC13150541/
Science is great, isn't it?
Recommended
Transcript
Introduction to ADHD UK Podcast
00:00:07
Speaker
Hello, I'm Jamie. I'm Max. And welcome to the ADHD UK podcast.
Focus on Science and ADHD Research
00:00:12
Speaker
Today is a science bit, I think it's fair to say, isn't it? Yeah, it's like the ADHD science podcast come back.
00:00:20
Speaker
Yeah, absolutely. from from From the grave, like a very benign
Introducing the Guests: Cleona O'Connor and Lucy McGill
00:00:25
Speaker
zombie. ah um So we're going to talk today to Cleona O'Connor and Lucy McGill from University College Dublin. Yeah.
00:00:34
Speaker
Looking forward to this. It's going to great. um And they'll be talking about um the adult experience of ADHD diagnosis, something probably it's fair to say close to both of our hearts.
00:00:48
Speaker
Absolutely. Absolutely.
Systematic Review of ADHD Diagnosis
00:00:50
Speaker
and and as I understand, the um gathered data from pre-existing studies from across different countries? Yeah, so I think we didn't necessarily spell it out. They didn't gather their own data. They gathered data from – it's a systematic review, so they gathered data from other researchers to kind of, as ah as I describe it in in the interview, smush it together um and and trying to make some sense of it. But by doing that, you get a much bigger –
00:01:22
Speaker
sample and so the individual foibles of the researchers or the individual response and responders,
Complexities in ADHD Research
00:01:29
Speaker
some of that can get smoothed out so you can get a little bit of a better um ah picture ah overall. But I think Clona and Lucy are very honest about the the shortcomings of that.
00:01:39
Speaker
um approach and some of the difficulties with the data and how it it this is an area that's moving so fast that anything that you produce is going to be out of date by the time it comes out and that's the way of the world um but it's an excellent piece of work and a really good chat wasn't it? It was awesome it was it was really good yeah yeah so um and a little celebration at the end which I was not expecting which was lovely so so look forward to that um and ah away we go here we go
00:02:12
Speaker
So welcome all to the ADHD UK
Guests' Academic Backgrounds and Motivations
00:02:15
Speaker
podcast. We welcome Cleona O'Connor and Lucy McGill. Please do introduce yourselves. And this is the third attempt.
00:02:23
Speaker
Don't worry, guys, everything's working. So carry on. okay yeah Hi, and thanks so much for having us. My name is Cleona O'Connor. I'm an associate professor in the School of Psychology in University College Dublin. and I'm a social psychologist. My research interests are around how categories that originally derived from science or medicine, so things like psychiatric diagnoses, become incorporated into people's self-concept, their identity, their kind of common sense.
00:02:54
Speaker
My name is Lucy McGill. I'm a psychologist in clinical training and a doctoral researcher in University College Dublin and currently on the Doctorate in Clinical Psychology program.
00:03:07
Speaker
Amazing. And what we're going to talk about today is a study that I sort of came across of yours fairly recent, I think. um Very recent, actually. And you're looking at the lived experience of people getting an adult diagnosis of ADHD.
00:03:23
Speaker
um So I suppose the first question is, what led you to do this particular piece of work? What inspired you to to to go down this route?
Importance of Lived Experiences
00:03:35
Speaker
and So I guess the context for it is, you know, there's growing awareness of the life course nature of ADHD, both among clinical professionals and among the general public. And as a result, there are growing numbers of adults undergoing ADHD assessment and receiving diagnoses. and
00:03:54
Speaker
And that diagnostic process isn't just a kind of self-contained, purely clinical event. It's also a social and emotional experience for the people who are at the receiving end. And understanding what that lived experience is like is really important for designing sensitive systems or policies around adult ADHD diagnosis and that genuinely serve the population that they target. And and in recent years, then, there's been a growing body of research
Methodology of Systematic Review
00:04:23
Speaker
recognizing this. So there's growing research that has directly investigated what characterizes that first person experience of undergoing ADHD diagnosis as an adult. and But it's often quite small scale individual studies that might be published in quite kind of disconnected, disparate academic journals. So this is a systematic review. So basically aims to bring all that evidence together, summarize it and synthesize it to lay out what is currently known about lived experiences of adult ADHD diagnosis.
00:04:57
Speaker
um We also did this because this was part of Lucy's doctoral study. She had to do a research project. and So maybe Lucy, do you remember as far back as when we started this journey, how we actually arrived here?
00:05:14
Speaker
Yeah, I think I was um definitely interested in ADHD as a topic. and I'm particularly interested, I suppose, in that diagnostic piece. And and I had previously worked in services where like ah um adult services and child services where this conversation was happening among and clinicians working there around and adult ADHD diagnosis, child ADHD diagnosis.
00:05:39
Speaker
And um yeah, I suppose that kind of sparked my interest in terms of what's that experience like for the individuals who are involved.
Challenges in Data Synthesis
00:05:50
Speaker
And what you chose to do is a systematic review. So it's probably worth just pausing a minute, I'm sure. I mean, seasoned listeners to the ADHD Science podcast, which this used to be called, will know what a systematic review is because we've explained it a few times, but we are spreading our wings a bit wider. So is it worth just quickly talking about what one of those is and then...
00:06:14
Speaker
the particular difficulties that you might have had to deal with, with this kind, you know, the kind of studies that you were looking at in this case? Yeah. So a systematic review is basically an evidence synthesis. So it tries to summarize what the current state of the art is, what the research literature on a specific topic says as a whole, rather than looking at individual studies. So there's a very structured, very elaborate process for doing a systematic review involving and specific keyword searches in a range of academic journals. I think we did six perhaps Lucy, if memory serves. Databases.
00:06:55
Speaker
Yeah. So then that and six databases are academic databases rather than academic journals. And and I think that generated nearly 13,000 abstracts. Yeah, there were some eye-boggling figures. There always are. Yeah, that poor Lucy to wade through one. 10,331.
00:07:13
Speaker
and ten thousand three hundred and thirty one Right. ah Poor Lucy looks dead behind the eyes as she remembers that point in her life.
00:07:26
Speaker
So you go through them in a very kind of structured way, determine whether they meet your eligibility criteria, i.e. whether they are talking about the type of evidence that you're interested in, whether that's contained within that article, And and then you reach a subset, hopefully a much smaller than 13,000 subset of that. And then there's ah that that. So they're the articles that you're eventually going to include. I think we had, was it 20, 21-ish? 21, I think. eighty one
00:08:00
Speaker
21. And then you just bring those together, summarize what the key trends and findings are that run across that literature. So I think at that point, the question is Because generally speaking, i mean, on my background is in physical medicine kind of going way back.
00:08:19
Speaker
And when you do a so systematic review, let's say you've got a study where you're looking at blood pressure medication for 100 people and another study when you're looking at the same blood pressure medication with another 200 people, it's quite easy to put those two together and go, well, we've got a study. you We make it make basically do a little jiggling and make it more or less a study of 300 people and see how this medication works. Yeah.
00:08:42
Speaker
it doesn't feel like with these kind of studies where you've got this this in this ah researcher who's really interested in the social aspects of ADHD diagnosis, this other person who's really interested in the internal, how this person relates to themselves,
00:09:01
Speaker
ah how do you smush effectively and robustly all of these quite different perspectives and different papers into a single paper that makes sense? Because you have.
00:09:16
Speaker
Well, so thankfully we didn't have to devise a strategy for smushing because there are already quite established ways to do so. and ah So this is a primarily qualitative literature.
00:09:30
Speaker
We had originally set out to incorporate both quantitative and qualitative research. But despite looking at 13,000 abstracts, we didn't find a single quantitative study.
00:09:43
Speaker
So no one's counting anything, just to be absolutely clear. No one's looking at scores or anything like that. Yeah, so all of the evidence we found was qualitative research, which typically involves conducting interviews and with people with a particular experience and and then summarizing, for want of a better word, and the content or the meaning of of what they said.
00:10:08
Speaker
and So there are ah established techniques for synthesizing all that information. We use thematic synthesis. and There's software to help with that. It basically involves, I mean, there's a lot of and judgment involved still. So you go through kind of line by line the the pieces of each study's results section that are relevant to your research question. You have a structured coding frame, so you apply particular codes to particular pieces of text that then tag all the text that's pertaining to a specific issue. And and then you build that up into identifying the themes or patterns of meaning that traverse the whole data set.
00:10:48
Speaker
Yeah, and you did that. and So I suppose it brings us to the second question. Having done all of that analysis and and and kind of you know eye-boggling amount of reading of abstracts, um what did you find?
00:11:05
Speaker
Lucy, do you want to take that one Yeah. um So I suppose the themes that we ended up with were in relation to ADHD with the relationship with the self, ADHD diagnosis,
00:11:18
Speaker
in terms of its relationship to other people and the relationship then
Impact of ADHD Diagnosis on Self-Concept
00:11:22
Speaker
with systems. So kind of three relational and processes were um the way that we arranged the findings. and In terms of looking at some and individuals' relationships with themselves, we were, well, the themes that came, the themes that we had were around conceptualizing the self and evaluating the self. So conceptualizing being that individuals sort of had a new self-understanding with their ADHD diagnosis, kind of an explanation for um things that happened to them previously or the way that they are. and We also had then evaluating the self in terms of being able to think about them themselves in a new light, um removing maybe things like self-blame and having more self-compassion and self-forgiveness.
00:12:10
Speaker
We then looked at the relationship with others. So the two kind of sub-themes that we had there were around and difference and disconnection and and then stigma and community. So essentially the way that individuals were relating to other people around them, um that they had experienced a lot of stigma previously and kind of a pervasive sense of feeling different to others. um And I suppose then the ADHD diagnosis changing in some way or and shedding light in some way on the relationships that they had um with other people. and the impact of things like stigma or stereotypes on that.
00:12:47
Speaker
And then the third um sort of overarching theme was to do with individuals' relationships with systems.
Barriers in ADHD Diagnosis Access
00:12:54
Speaker
um And I suppose a lot of medical systems or diagnostic systems, um the kind of three main themes within that, we looked at barriers um and delays in terms of getting diagnosis, things that prevented them from being able to access diagnoses, and there was kind of a wide and variety of barriers but loosely within sort of like clinicians maybe lacking awareness or and difficulty actually accessing or getting on to the diagnostic pathway. and Then other people and other studies found the diagnosis to be a gateway so it it provided access to things like treatment, and largely medication but also things like coping skills and and adaptations that people could then make to their environment that were making a positive impact on their lives.
00:13:46
Speaker
um And the third part in that was that there was still, even with being able to access some supports, I suppose a lack of services or still um services or supports that were that were needed or people felt they would have liked more of.
00:13:59
Speaker
So that's a kind of brief brief overview of our main um the main findings. But I suppose those three like relational processes, the relationship with the self, the relationship with others and the relationship with systems, that were impacted by receiving a diagnosis of ADHD in adulthood.
00:14:15
Speaker
Thanks. Yeah, that's a great summary. And I think probably worth digging into each of those in turn, maybe. yeah. yeah And what you found. ah thought it was really interesting...
00:14:29
Speaker
Certainly with the relationship with self, it often you can get the impression particularly, and I know I sort of have a history of being a bit down on the on on social media, kind of a bit negative about social media, but I think on social media you can get the impression that it is uncomplicatedly good thing. Oh, absolutely, 100%.
00:14:54
Speaker
Yeah, and and you didn't find that in your study. There's light and shade, there's grief, there's anger, there's all of these things that come through.
Non-linear Experience of ADHD Diagnosis
00:15:03
Speaker
Absolutely. And I suppose really that idea that it's not a linear process, that it you know it doesn't necessarily go through this fixed pattern in the same way for everybody, that it can feel like this great relief and then it can feel actually a lot of anger and hurt at things that they may be missed out on. then there might be happiness at accessing some things and sadness at not accessing others. So really what I am felt was there quite strongly was that this idea that it's it's really non-linear and so individual and different for everybody.
00:15:37
Speaker
Yeah, I think that different for everybody is a really important point. And I think the other important caveat to make here is that we're drawing these conclusions based on people who chose to participate in these kind of studies, right? So, These are people who saw some ad somewhere, possibly in an ADHD service or on an ADHD social media account, ah who was asking people, do you want to come and talk to a researcher about your experience of ADHD diagnosis?
00:16:06
Speaker
There could very well be a cohort of people there who have actually gotten or been offered an ADHD diagnosis and have either outright rejected it, and just not kind of assimilated that into their identity,
00:16:20
Speaker
Or who ah have it but don't necessarily see it as massively meaningful part of their lives, you know, they're going to keep themselves at a bit of a remove. We don't really get to hear that much about their perspective. That's not an interesting point. yeah yeah Yeah. So there's that variability as well. There's a huge variability even within the data that we do see. Some people...
00:16:41
Speaker
are more on the positive, some are more on the negative, some vacillate between both on a day-by-day, context-by-context basis. But there's probably, in the real world, a much more, even more wider variability in experiences.
00:16:55
Speaker
Yeah. Yeah. I think about, I suppose I'm thinking about this cohort now of people who are becoming young adults who've been diagnosed in adolescence, sometimes not necessarily against their will, but with their acquiescence rather than any enthusiasm, if that makes
Adolescents vs Adults in ADHD Diagnosis
00:17:11
Speaker
sense. A lot of the adolescents that I, die because obviously working I work with children and young people, a lot of the adolescents I work with, you're right, they didn't they wouldn't participate in a study like this because they're like, whatever.
00:17:23
Speaker
You say I am this thing, fine. I'll accept it for now. i won't I won't necessarily embrace it. And I'm just so interested in how these people end up thinking about their ADHD, if indeed it is still a thing for them as they get older. I i don't know the answer. its It's really interesting. Yeah, absolutely. And i think the difference from the adult population there is the agency in getting the diagnosis, right? So You know, it's it's hard to get an adult ADHD diagnosis. It doesn't kind of happen in an incidental way.
00:17:56
Speaker
Most people really quite proactively push to get it. So that is a very different experience from you, you know, coming into contact with a clinical professional from some other difficulty that you're having in your life.
00:18:11
Speaker
And then ADHD is kind of landed on you.
00:18:16
Speaker
Yeah, and I suppose in terms of even thinking about some of the barriers and the um the services that people went on to access then, like as an adult, again, that push, I suppose, like Cleona said, in that agency, um really came across that idea that, and I suppose that active kind of process in terms of some of the identity assimilation as well, that that it was something that people were actively thinking about, possibly after having kind of actively pursued it.
00:18:43
Speaker
Do they they think about their past a lot? It's really striking to me how many people talk about themselves as a child. How people like send me if they're or talk to us at ADHD UK about school reports they might have received or negative feedback, specific things from teachers. and There's a really great example, Petten, who was our previous speaker,
00:19:11
Speaker
well, last but one guest um talked a lot about his school
Reflecting on Past Experiences
00:19:15
Speaker
days. um And it's quite a common um in the lived experiences to talk about early life experiences.
00:19:23
Speaker
Yeah. And I suppose part of the diagnostic process is, you know, that that a requirement is that it is there from childhood. So often the process itself can, you know, of receiving a diagnosis can become kind of a reflective experience in, in going right back to childhood and thinking all the way through.
00:19:41
Speaker
um And sometimes people are asked to bring things like school reports or um things like that. So there's there's kind of a piece of the diagnostic process maybe that prompts that. But and there was certainly a sense of people thinking about things. And like you mentioned, particularly things that have been said to them maybe or labels that have been put on them um and sort of a kind of an active like reshuffling of the labels that they were now going to choose to identify with versus maybe some of the ones that have been put on them, like from childhood all the way up.
00:20:14
Speaker
Another thing that, sorry, that a kind of ripple effect of that kind of retrospective looking back on your life as well, is that it can sometimes impair relationships. So what I've seen happen a lot, and I do work with adult diagnosis of autism as well, and the the patterns are quite similar in terms of how people adapt to that kind of new knowledge.
00:20:35
Speaker
What often happens is people start to get very resentful of their parents or even their teachers, the adults in their lives who they felt should have picked up something and should have funneled them towards it. Um, yeah.
00:20:49
Speaker
And sometimes people aren't necessarily massively empathetic about the the position that a parent might have been in, in that particular historical period where it was a massively stigmatized, I mean, there's a definitely still stigma then, but, you know, 20, 30 years ago, it was a massively different era.
00:21:09
Speaker
So I think Sometimes it it can have that relational impact as well, that that look looking back over your life. And and actually, you know, it's this this kind of puzzle that really intrigues me, which is that, so when you ask people about their lives, a lot a lot of them say, my life would have been better if I had gotten that diagnosis earlier.
00:21:38
Speaker
So we we see that in qualitative work. that asks people to kind of self-report. That's their kind of intuition looking back and kind of imagining what life could have been like. We don't find that in the quantitative work that we've been able to do that has tracked the impact of receiving an early diagnosis.
00:21:58
Speaker
So a way that we've been able to study that and is to kind of retro-engineer some work that uses and large ah longitudinal data sets. So we have one in Ireland called the Growing Up in Ireland data set, where it tracks kids from an early age and comes back to them every four or five years throughout their life.
00:22:23
Speaker
And then we can get access to that data kind of retrospectively. So one of the analysis that we've done for ADHD, and we've done it for for other diagnoses as well, is we identify young people at baseline. So in this case, it was nine-year-old children who were scoring in the clinical range of standardized hyperactivity
Analyzing ADHD Impact Over Time
00:22:46
Speaker
scale. So they they probably would have qualified for at an ADHD diagnosis based on clinical thresholds. But who at that point, at nine years, didn't hold a formal diagnosis.
00:22:58
Speaker
We then follow that cohort up to when they're 13 and 17. By that point, some of them will have gotten a diagnosis. And what we can do is we can compare the ones who started off with the same kind of baseline symptom intensity and then compare the ones who subsequent suddenly got a diagnosis versus the ones who stayed undiagnosed and then control for the intensity of the symptoms and all of the socio-demographic factors that could kind of complicate that relationship, we can kind of statistically take them out of the equation.
00:23:32
Speaker
And the trend that we find, and other researchers have found that too, is that actually the undiagnosed group tend to be doing better in a global sense. So things like self-esteem, things like peer relationships, and things like educational performance.
00:23:52
Speaker
And and like everything in this space, you know, there's a lot of nuance um and caveats around kind of unclear pathways for these effects. Yeah. And and but it and it is likely specific. Why these people remain undiagnosed? Yeah, exactly. There's lots of stuff going on.
00:24:14
Speaker
Yeah. But I think one of the things is that this is likely specific to historical context. So this data is going back to data that was collected in the two thousand s right?
00:24:24
Speaker
So a nine-year-old receiving an ADHD diagnosis in the 2000s would likely have had a very different experience of adolescence of school than a nine-year-old who might be receiving a diagnosis of ADHD today.
00:24:41
Speaker
And I think that message is kind of important for people who are gaining a diagnosis as adults and looking back and having that regret that they weren't diagnosed earlier, there might certainly have been some benefits to their kind of self-understanding and navigating their lives. But I think it's also important to remember that it would also have and it would have kind of traded off against exposure to stigma, negative peer or teacher or family reactions.
00:25:11
Speaker
They probably would have What you're saying, yeah, is that that the kids who were diagnosed in the noughties, didn't necessarily do better, but that doesn't mean that, yeah, it's almost a counterfactual. It doesn't mean that early diagnosis in the current cohort is not helpful. It just means it wasn't necessarily that helpful then. Because I think there's quite there's there's other data that has looked at things in different ways that have suggested that early diagnosis is a good thing, but that you're not suggesting that's not true. You're saying in these particular cohorts.
00:25:41
Speaker
Absolutely. And I think early diagnosis probably does help with symptom control, But in those other areas of life, in things like peer relations, and in things like self-esteem, which are the things that I'm interested in as a social psychologist, and things that are also really important for your global well-being and life satisfaction, those are things that aren't necessarily always tested when you're looking at the impact of an early diagnosis. It tends to be kind of quite narrowly focused on does the diagnosis lead to treatment that helps you kind of gain control of the symptoms that cause the diagnosis? Yes, absolutely.
00:26:16
Speaker
Yeah, yeah, yeah, yeah. I'm kind of interested in what you said a minute ago about how it's, you know, different for somebody to have a young person to have a diagnosis in the 90s as opposed to now or in the
Evolving Public Perception of ADHD
00:26:31
Speaker
2000s to now. Like, why What do you mean by that? Sorry.
00:26:36
Speaker
Oh, just that like the like ah there's so much more public understanding about it now. Oh, yeah. no You know, it's yeah. Like it. And it's also more common. You know, it doesn't it wouldn't have someone out as so unusual to the same extent as it would have.
00:26:53
Speaker
if you were the only person, not in a class, but in a whole school, in a whole neighborhood, you know? Yeah, now that makes sort of sense, yeah. I mean, I started diagnosing ADHD in sort of the middle of the noughties, so I've sort of lived the 20 years that you're talking about, and...
00:27:10
Speaker
It is very different. I think we're diagnosing a very different cohort now. And and it I suppose, you know, it's hard to generalise, but certainly there is no comparison in terms of perception public perceptions and just aware awareness is just off the scale different in the last 20 years. It's it's iss extraordinary.
00:27:36
Speaker
You know, we wouldn't have dreamt of ADHD UK as a charity nobody doesn't fix when I started. um Yeah, the culture is different. Yeah, no that makes a lot of sense. 20 years of diagnosing ADHD.
00:27:56
Speaker
yes I was just going to say, thinking you about the adults who likely would have been kind of involved in the studies that we collated together, they likely maybe would have been diagnosed like that in the noughties you know, earlier or 2000s kind of, anne or sorry, if they had been diagnosed as children, it would have been then, whereas actually they got it as adults. So their way of looking back obviously had that tint of their adult experience and the way that it's thought about now.
00:28:25
Speaker
And now do you have, I think that the thing about anger at parents is something that sort of resonates a lot. um I suppose it's what you just said is also almost kind of a little bit of a moderating that anger because the parents were doing that, may well have been doing their best and just didn't know any better or didn't understand.
00:28:50
Speaker
and And the same is true of schools. There wasn't anything like the the kind of understanding... that there is now and also schools i mean certainly in the yeah UK context schools change have changed a lot in the last 20 years ah in terms of being much more performance orientated I don't know if the same is true in Ireland more performance oriented now than they would
00:29:16
Speaker
I'm not massively familiar with schools currently my kids are pre-school but um that wouldn't have have jumped out at me as a general no it's just it's something that happened very very definitely in the the sort of early years of the tory government um in the 2010s so that's one of the things we haven't one of those you've never had one of those famously famously not keen on the tories yeah okay Let's not go into that particular bit of a global industry.
Post-Diagnosis Challenges and Support
00:29:48
Speaker
perfect f
00:29:50
Speaker
Going back to the barriers to access to services and diagnosis and stuff like that, did you find that that was consistent across all of the countries that you looked at? Oh, yeah.
00:30:04
Speaker
and So I suppose that we our search was limited to English-speaking papers or papers that were written in English. So that obviously limited the countries that we could look at data from to largely English-speaking countries. and Although some there were some European countries um where English wasn't a first language included, but um I suppose the pool of countries was quite small and or at least limited to English-speaking countries. Yeah.
00:30:34
Speaker
So the, oh, sorry, we lost, in terms of barriers, we didn't actually break it down by country, which would have been a really interesting thing to look at. and um But there were definite similarities across the papers in terms of different barriers that were experienced.
00:30:50
Speaker
Okay. That's interesting. So you didn't, and so you you looked at different countries, but you didn't really segment the information that you were taking, you just sort of okay there were I think but the vast majority were US based. You're going to get far more um yeah i mean you're going far more data from there, I'm sure.
00:31:12
Speaker
And of course the US system, as increasingly as true in the British system, that your access to diagnosis is quite determined by your income, essentially. very much so in the Irish system also.
00:31:25
Speaker
even yeah Yeah, and I guess that the the US are just a little bit ahead when it comes to ADHD as well, but then that's exactly what you said, that's because it's based on income and stuff like that.
00:31:36
Speaker
yeah I was i'm really interested in in this idea of um diagnosis, this experience of diagnosis where you kind of, I don't know, either invest a lot of money in it or you wait a long time for it. You have all of this sort of investment emotionally in it and then you get it and then it's sort of, well, now what?
00:32:01
Speaker
And that's something that I'm very acutely aware of. if you don't go forward to ADHD medication and you're not studying ah that phase of treatment, what are the feelings about almost a feeling of anticlimax, I think sometimes?
00:32:21
Speaker
Yeah. um What do you think, Lucy? Yeah, that definitely did come across in in the data. Like there was a a large cohort who did access medication or supports, but there was also... um a large cohort who felt that sort of they were left like that now what feeling afterwards. um And some who were kind of offered medication, but maybe not offered loads of information around different parts of it or and not offered alternatives and or the supports just weren't like alternative supports just weren't there. So there was there was a feel for kind of a want for maybe more holistic and approach.
00:33:01
Speaker
post diagnosis or at least just other places to turn, um that that feeling was definitely present. And I see that really strongly come through in the autism space as well, given to a greater extent, because there is no like treatment in inverted commas. So and at least with ADHD, typically, you know people can get access to at least the the choice of medication, you know usually after a diagnosis, if not the more kind of holistic psychological therapies, which can be trickier to access. Whereas in the autism space, it pretty much just is like, yep, this is this is the label. And now that that is... Off you go.
00:33:48
Speaker
Yeah. And lots of people do still find that worthwhile, like just for the label and the types of explanation and the coping strategies and the community that that facilitates.
00:33:58
Speaker
and But yeah, it's definitely, yeah it can definitely have that anticlimactic thing. I think that's partly structural as well. Going back to what we were talking about in terms of and kind of a a private ah diagnostic routes, like people paying to get an assessment. um And certainly in Ireland, there are places where they just do assessments, you know, and they're not really linked into any more therapeutic,
00:34:28
Speaker
service that like their service starts it starts at the start of the assessment and ends at the diagnosis. and And there's not necessarily any follow up from there or referral necessarily to elsewhere.
00:34:42
Speaker
i think I think that's partly in the private sector, that's definitely true, but it's also true, I mean, in in the and NHS, that's the typical approach because of the lack of clear evidence base for talking therapies or other kind of supports, coaching or something like that, that can on an individual basis be really super helpful, but because it's not got that difficult to get this particular kind of evidence that kind of feeds into clinical guidelines. It is not uncommon in the NHS, well, very common in the and NHS to have purely diagnostic service, and then either you get discharged from the service or you go onto the medication pathway. That's certainly how we run it in my in my service, because that's what the NICE guidance tells us tells us to do.
00:35:27
Speaker
So, yeah, i think I think that anticlimax, if you're not going to go for medication is is something that is sort of baked in in both conditions really, um which can be quite difficult to grapple with.
00:35:45
Speaker
Yeah, but a lot of people still say it's worthwhile, you know, they feel just kind of subjectively for the benefit that it gives them for the self-understanding, the way to kind of explain themselves to others,
00:35:57
Speaker
and they still deem it worthwhile even it though it doesn't necessarily... No, absolutely they do. Absolutely. i can totally see why. and So I suppose the the thing I'm wondering, there are other ways of describing difficulties, of describing difference.
00:36:13
Speaker
When you diagnose someone, you place them in a category, a medically defined category which is externally placed on
Identity and Community in ADHD Diagnosis
00:36:23
Speaker
that person. You put them in the in a box, essentially. And there are a lots of problems with that approach.
00:36:29
Speaker
There are other approaches to it, and I'm sure as a social psychologist you'll be interested in in those approaches, or narrative approaches, or kind of systemic approaches, all of those sorts of approaches.
00:36:40
Speaker
Nonetheless, it does seem that there's something almost kind – I don't want to say magical, but almost kind of – it's a little bit sacred, the diagnosis is has got a power that these other approaches somehow don't have invalidating in in changing things. do Would you agree with that?
00:37:00
Speaker
And what is that power? Yeah, absolutely. and And I've done a lot of work actually about that, how people respond to different forms of diagnostic systems.
00:37:13
Speaker
And the kind of the narrative, the dimensional approaches to classifying clinical difficulties tend to be more preferred by clinicians and scientists than people themselves because they're so complex and they require so many words to explain. and it's It's very different from having that kind of one single term that seems to operate as a catch-all. and There was ah a recent and paper that got a bit of attention that suggested that and diagnosis itself can have a therapeutic effect. man
00:37:47
Speaker
They called it the Rumble Stillskin effect after that fairy tale where can't remember the exact details, but it's about the person guessing the name of the person. You have to guess his name. That's right.
00:37:59
Speaker
And then the power goes away or something like that. So and it's about, yeah, that the label giving that sense of kind of closure. and And the label also links that person to other people, right? It says you're not alone, you're not completely unique, which is what a lot of the other kind of more narrative approaches might might imply.
00:38:22
Speaker
it it puts that person in it in a category with other people. And that then can be a really, really useful source of community. And even if they never meet people face to face, sometimes there's value in just knowing there are other people like me out there.
00:38:38
Speaker
Yeah, i think that I think it does do that. i think that's what That that's links me to my other question about this, which was underlying all of this, and this is something that my manager, that my service lead asked me, because if we don't treat people, but and this is true of autism and ADHD, we we might as well bring them both in.
00:39:00
Speaker
How do we demonstrate that diagnosis on its own is a benefit? if this I haven't read this paper, but it may be that that would Because we don't seem to have numbers to show that just diagnosing people actually makes them feel better.
00:39:14
Speaker
and And that's a bit of a gap, a surprising gap in the in the literature for me.
00:39:22
Speaker
um It's a gap because it's really hard to study. no look for people not not saying people are just not bothering. Yeah. It's really, really tricky. Yeah, there's just so many practical issues. Like you can't randomly assign certain people to have a diagnosis and certain people not have a diagnosis. It's really difficult to detach the diagnosis versus the difficulties or symptoms that gave rise to that diagnosis.
00:39:52
Speaker
um So one of the ways that we can do that is relates to what I was saying earlier about going back to these longitudinal data sets and trying to compare people who look like they're kind of having the same level of difficulty.
00:40:05
Speaker
Some of those will have a diagnosis and others don't and then trying to to to follow them up. and But there's not much research that has actually done that. And again, as I was saying earlier, by nature, all of those data sets are retrospective. So they would have been collected quite a ah few years ago.
00:40:24
Speaker
So it's hard to do in real time in terms of what's going on in this current cultural context.
Fast-Paced ADHD Research
00:40:31
Speaker
Yeah, and the cultural context changes so quickly that it's it's very difficult.
00:40:36
Speaker
By the time you've kind of set this to step the study up, it's all changed again. Yeah, exactly. Things are moving very fast. um to gri So before we move on to the kind of implications of the of the study and how what people could should take from it, was there anything else, Jamie, you wanted to ask about the content, what they what these guys found?
00:40:59
Speaker
Yeah. So, um I mean, I was looking at earlier on, and am right saying that you found that ADHD lacks a sort of community identity that ought to autism research has already built? Why would you say that is?
00:41:16
Speaker
Yeah, this is something Clare and I have discussed quite a bit, um because it was something that didn't come across, I suppose, as strongly in the findings as we were maybe expecting. um that there was a sense for some people that it added a sense of community, but not nearly for as many maybe, or as frequently as we thought it might. And I suppose there's, well, we've played around with a couple of ideas and without, you know, knowing maybe definitively why, but possibly because there's access to other sources of supports like medication for ADHD, which isn't available for autism.
00:41:53
Speaker
possibly to do with um maybe that ADHD community having some social supports already. and I suppose there were some and people in the data who had, you know, did have family and friends support throughout the diagnostic process and close relationships throughout. While there were some that had kind of fractured relationships, there were some um who had steady ones. But yeah, it's hard to know, I suppose, why,
00:42:20
Speaker
why why that came across and not as strongly within this literature. I don't know there's fits to happen.
00:42:32
Speaker
It's kind of difficult to speculate because obviously you didn't really segment... um from different places but i as I understand like the autism community they've got like the Autism Act and then I feel like their relationship with the neurodiversity movement more broadly is kind of more close-knit I don't know if there's maybe something to do with that I think it definitely is. And I think it's going back to the kind of historical context again, in that a lot of this evidence would have been published, you know, several years ago. So we're, you know, there were some more recent ones, but there's a lot of these that are, you know, 10, 15 years old, the data was selected. And, you know, the idea of neurodiversity was certainly around then, but it definitely didn't have the same purchase. And, you know, still it's their early years of that have been very much linked with the autism community. So I feel like that's in that. more established there. and So we were definitely expecting, I think, the topic of neurodiversity to be mentioned a bit more in the data, and very few people did if memory served.
Neurodiversity Movement's Impact
00:43:34
Speaker
But I feel like you kind of did that today, you would get quite a different result. Yeah, that is interesting. So you're saying that like um so like the data that you analysed is maybe a little bit more out of date and that's why it's not new I guess I don't know you would all know more about this than me but you know like the the you know there doesn't seem to be a lot of don't know I feel feel like the and data for ADHD is a little bit behind is ah like am I am i wrong there I don't know
00:44:14
Speaker
and Yeah, like, ah yeah, it's probably understudied, i would would say it probably needs a bit more empirical attention, especially given how quickly the clinical profiles and the social profiles are changing, we do probably need more current evidence.
00:44:32
Speaker
I think we've got, I think we've, I think ADHD research has been in a medication only rut for quite was in quite a medication only rut for quite a few years where the focus as Claire has sort of mentioned before is about diagnosing, treating the core symptoms and seeing what's best to treat those core symptoms.
00:44:53
Speaker
The, at the, attention on the wider lives of ADHD people, on the kind of impact of diagnosis, the communities, that's very new. And that's almost quite since I've started podcasting about it. But, you know, certainly since, you know, in the few years since I've been sort of talking about it with this kind of hat on, it the experience the the The breadth of the field has has been very exciting. it very exciting time to be involved, but but everything is very new. um I mean, and just to say, you know, when I was when i started diagnosing ADHD 20 years ago, there was in every district, there was a National Autistic Society group for parents.
00:45:41
Speaker
There was nothing for ADHD whatsoever. The National Autistic Society, which i just I just looked up, was founded in 1962. Where ADHD UK, I know we're not the only ADHD charity. I can't remember when the ADHD Foundation was founded. But we were founded in 2019. you know, it's a huge... we we I always say we're 20 years behind the
ADHD vs Autism: Community Development
00:46:03
Speaker
autism. Oh, 100%. At least 20 years. Yeah, absolutely. unity And it's not ah it's not a competition, but I think i think that is definitely true.
00:46:13
Speaker
um And it's, in a way, been quite difficult because we've become into prominence at a time at ah around the time when there's a lot of scepticism. And I suppose maybe...
00:46:25
Speaker
that way, that current wave of skepticism about diagnosis and over-diagnosis that we're currently currently experiencing, probably your study doesn't kit because it's the data is a bit too old. But I wonder, actually, if you did it again, you would find a whole different load of concerns about people being... There is a bit of... um Obviously, there's there's a whole section about stigma, but actually, we always talk about stigma getting better. But I wonder if, in some ways, we're getting into a yeah period where it's getting worse in some ways.
Skepticism and Diagnosis Costs
00:46:59
Speaker
Yeah, I think there's definitely a sense that the diagnosis... There's a lot of scepticism now. you know, especially for the adult diagnosis. it's It's when someone seems to have been functioning okay for their whole life.
00:47:11
Speaker
Well, today I saw a national newspaper, a column in a national newspaper say, your child doesn't have special needs, they're just naughty. Yeah. um And I'm like... tell you What year are we in here? And i um you can guess which one of one of the few newspapers. You can probably get a short list of three which newspaper it would be. Not an Irish newspaper, I hasten to add. um um So shall we move on to implications? We have this sort standard sort of thing from from from from back in the day.
00:47:44
Speaker
What... it As a person with ADHD, I got an an adult diagnosis of ADHD myself. what For people like me, what are the implications of what you found? What what should they take away?
00:47:57
Speaker
Lucy, do you want to Well, I suppose if for people who are you know maybe considering it, pursuing a diagnosis in the process of it or already have, I suppose, that idea that the process is very unique and individual for everybody. That it isn't necessarily yeah, as I said, linear, you know, there's there's lots of different print reactions and responses and feelings that that it can evoke. It can be a really emotive, um really challenging and also really lovely process depending on um the person and what's going on for them and also the the diagnostic process itself, the way that that's kind of handled. and So I guess, yeah, one of the the main implications is that idea that um there's there's a huge variety of ways that people can experience a diagnosis. um
00:48:45
Speaker
I suppose also thinking about maybe if we're looking at like clinicians thinking about, i suppose, understanding more about the process of an ADHD diagnosis in adulthood, understanding more about the benefits, understanding more about how we can facilitate that process to be as um helpful for the person accessing it as possible. um And I suppose if we're thinking about systems and services, thinking about services that are, you know, listening to the voices of service users listening to the voices of people with lived experience to help inform the the process and reduce or remove m barriers to supports and that might be there.
00:49:28
Speaker
Yeah, i I agree. I think for people who are considering going down the assessment route, I do think it's important to bear in mind that there will be costs and benefits.
00:49:39
Speaker
And it's worth thinking seriously about what they are likely to be within your specific unique life and then weighing them up against each other, you know, trying to put a value. I'll get that benefit. How much do I value that benefit compared to the the cost that it will come with? So, so doing that kind of trade off rather than, you know, necessarily going full throttle at something, I think it's, it's better to do, to be prepared.
00:50:07
Speaker
and and then think, i think and something else that I wanted to say, and now I can't remember. Oh, yeah. The other thing I think is to to bear in mind is that a diagnosis is not this binary point of no return, you can never go back to your old life type event.
Fluid Nature of Identity and Diagnosis
00:50:30
Speaker
It's very possible to get that diagnosis and to kind of wear it lightly, you know, to to weigh up... i going I might you know tell this person, I don't have to tell that person.
00:50:43
Speaker
and There is probably never going to be, there there are not many, if any, situations where you will be forced to identify yourself as having a particular psychiatric diagnosis.
00:50:55
Speaker
So it's totally up to you how you want to use that in your life in a way that serves you, or even how much you want to think about It's very possible to just have it on a piece of paper have it in your back pocket pocket to be used if and when you feel it's useful. It doesn't have to be this kind of really universalizing black and white dramatic thing. Yeah, I think that's what makes me think of the people who aren't in these studies as well, like you were thinking, and wearing it lightly it's ah is a choice. It's absolutely fine if you want to do that. Yeah.
00:51:35
Speaker
And equally, absolutely fine if you if you feel that is a really important part of your identity and that's how you want to, you know, identify yourself to yourself and others. That's absolutely legitimate also, but it's not the only way of of doing it.
00:51:51
Speaker
No, exactly. I think we've sort of stripped behind your paper quite effectively. Yeah. What doing this work and and and thinking about these things, what does it, what questions does it promote in you as researchers?
00:52:09
Speaker
What do you want? What does it make you want to look at next and find out next? Well, we've already done the next one. We never, we never even got a chance to say that. Lucy, do you want to talk about your... I've always got people saying, I've already done another three.
00:52:26
Speaker
Yeah, I suppose the finding that I was really struck by was the number of people who had already had access with mental health services prior to receiving their ADHD diagnosis as an adult. Either in childhood or in adulthood or both. I suppose the number of people and the like over half of the studies had people who had said that they had either been given previous diagnoses or felt that their ADHD diagnosis had been missed. in the contact that we had with mental health services prior to that. So I suppose the question that that prompted and the research question for the follow-up study that we did was around individuals' reflections on their mental health journey now
00:53:12
Speaker
with an understanding of their adult ADHD. So people who received a diagnosis of ADHD in adulthood and were reflecting and looking back on their journey through the mental health systems and with their um with their mental health challenges. um That was kind of the the follow-up, I suppose, or the main kind of question that came from it.
00:53:35
Speaker
The question you always hear is how much are you allowed to talk about your findings in that follow-up? I mean, I think I'm allowed to talk about three. I don't know.
00:53:47
Speaker
Yeah. Because that's a potent source of anger. We see it online. We see it on all the Facebook groups and anger at the people who didn't diagnose you 10 years ago, 15 years ago, 20 years ago, when you, when they could, you feel like they could have done.
00:54:04
Speaker
It's a, it's a different to the anger against parents, I think. Yeah, and especially when I suppose you're you're reaching out for support at a time when you're really struggling or really feel you need it. and So yeah, like feeling particularly vulnerable maybe when accessing those kinds of services, yeah.
00:54:22
Speaker
Well, that's not the exclusive reaction, right, Lucy? So in the analysis, we've identified that there are a few different ways that people make sense of or interpret the relationship between ADHD and the the previous mental health difficulties that they
Gender and ADHD Diagnosis
00:54:41
Speaker
experienced. And certainly if they feel like it's it was a forward error or misdiagnosis, that does seem to foster that kind of distrust of individual clinicians that broadens to the system as a whole. But lots of people say, yeah, I was depressed at that point in my life. and or I was really struggling with anxiety and it was good that I had some support at least for that. Sometimes they see that as kind of caused by or secondary to the undiagnosed ADHD. Other times people see it as a completely separate issue that was just a a legitimate problem that they were having in their life at that point in time.
00:55:21
Speaker
and So I think those... interpretations don't necessarily have the same ah implication for people's yeah trust yeah yeah there were also some people who felt that their um their adhd symptoms kind of had manifested in a way that on the outside looked like other um or it looked like different mental health um difficulties um and then other people who felt that their mental health difficulties kind of evolved from trying to maybe control um
00:55:55
Speaker
this sort of like inner chaos that they were experiencing or their, their ADHD piece. So there was a real kind of range of ways that people look back on, on the relationship between them. And like that, depending on what way they sort of viewed um that relationship really impacted then the way they thought about the services they received. And yeah, like Fiona said, it wasn't kind of always anger, but kind of a range of, of feelings there as well.
00:56:23
Speaker
Do you, My anecdotal experience is that there are more women who have had perhaps more negative dismissing experiences of mental health services and then end up with an ADHD diagnosis. There seems quite a gendered response, gendered difference in the journeys. I don't know.
00:56:46
Speaker
Is that what you found? Yeah, actually the follow-up study, we focused just on women for that reason. we see Yeah, a lot of women knew that that was their experience. So that was that was the cohort that we were looking at. And and and definitely a feeling among many of them that m of maybe being dismissed or maybe not being taken fully seriously and when they first would have presented with symptoms. um And some of them making a comparison with um trying to access sort of and sexual and reproductive health care that they felt the experience was quite similar um which was m interesting as well that idea of presenting with um with an issue really struggling maybe not being heard or not being seen or not being taken fully seriously.
00:57:35
Speaker
And also that a lot of them had experience of being dismissed not just because of their kind of social role as women, but because of their like biology as women. So a lot of them reported, and you know, at going to GPs or whoever and them saying, oh no, it's just, you know, your menstrual cycle. Yes. i wish you married someone yeah Because there is a big impact and ultimate like on menstrual cycle and ADHD. Of course. and But only just getting around to study that. That's another great example of something that's been completely different
00:58:10
Speaker
neglected over the years. Yeah. So is that a paper that's going coming out soon? Hopefully. It's under review. Okay. Let us know when it comes out. We can flag it to people. Of course. yeah Fantastic.
00:58:26
Speaker
um Jamie, anything else on your sort of teeming brain of questions? I've covered absolutely everything as far as I'm concerned. Fantastic. Great.
00:58:37
Speaker
Wonderful. Okay, well, i think we'll let you go. we've We've taken up a lot of your time, so thank you so much, Cliona O'Connor and Lucy McGill. Thank you for for joining us this evening. Oh, is there anything else you wanted to say before you before you go?
00:58:51
Speaker
m think I've covered everything. Yeah, I think we have. It's been really, yeah, great to be able to talk about it. So thanks
Celebration and Acknowledgments
00:58:59
Speaker
very much. Maybe maybe to mention that Lucy passed her pete her doctoral viva last week. Yay! Oh, a little celebration. Well, well done, Dr. Thank you very much. Fantastic.
00:59:13
Speaker
All right. and Well, on that you're going? The only other thing that comes to mind just when we were thinking about, um, kind of the the therapeutic approaches or the, we were talking about the like non-medication and treatments for ADHD. There's a kind of a research group also linked to UCD that's looking at an acceptance and commitment-based therapy group. And they've published a couple of papers on the um kind of the effectiveness in the first few, the first few um rounds of the group and to great success. So that's...
00:59:47
Speaker
um Yeah, linked with ADHD Ireland, but just that kind of acceptance and commitment therapy piece. would you let's do it Let's do an episode on acceptance and commitment therapy. Let's commit that now, shall we? No, I'm very interested in that. I think that's that would be really interesting as a topic. So, yes, let me know who that is and we will um harass them. you All right. Fantastic. Thank you very much, guys. Thank you so much.
01:00:17
Speaker
Cheers. That was Cleona and Lucy talking about their systematic review of the experiences of adult ADHD. I don't know about you, Max, but that was great.
01:00:27
Speaker
Yeah, it was, I mean, it was funny. It's obviously an experience that I've been through and it sort kind of A lot of things came up like you know anger at your parents, anger at your teachers. yeah yeah um But they were very kind of clear about it. And and I think the the thing that I take from it is that diagnosis is not a straightforward psychological process. it's It's non-linear, as they said a couple of times. I think that's so important. Yeah, no, that is. and ah thought it was quite good that they really spoke about...
01:01:01
Speaker
you know, the sort of different stages of like accepting ah grief and, you know, the difference between and how some people kind of found it empowering whilst others didn't really, you know, didn't really feel that. I don't know what your thoughts were. Yeah, yeah, yeah. Well, I think, I think, I think that the sense of anticlimax is a really important thing that people need to think about if they're heading towards a diagnosis that, you potential that it could end up as a bit of a squib.
01:01:33
Speaker
um And I think that's something that's really um important. but and And I think sometimes, at times we were kind of edging towards, well, diagnosis is a bit pointless on its own, m which is something that people say.
01:01:47
Speaker
yeah I mean, that's a modern thing. i didn't feel like they were edging towards that. and i I wouldn't believe that that's true. but Well, i think I think, because I think there is a real question about the value of diagnosis if you're not going to treat. And I think that's that that is a valid question. um And I think there's an's an answer in there, but it's not as straightforward because everyone's really happy when they're diagnosed. that the The answer is because it adds a kind of meaning and a kind of,
01:02:15
Speaker
identity to people that either they can find really helpful or unhelpful or they, and as they said, wear lightly. It very much varies. So it means a lot. But what it means is very
01:02:31
Speaker
individualized and that makes it really difficult to sell the importance of diagnosis to people who have who hold budgets for the NHS or something because it's sort of yeah we know it matters we just don't know what it does to an individual um yeah I guess we we spoke about how some people find the diagnosis kind of therapeutic and did we not did they not talk about fairy tale at some point rumble stiltskin yeah yeah Yeah. So naming it can be really, really powerful. I think that's true. and it's
01:03:04
Speaker
And you also giving it a simple name, not just sort of explaining it in a what in a kind of lengthy way with all sorts of kind of roots. And and right in some ways it's truer to life to to be narrative and narrative. what we call systemic, so you know building on the person's, the depth of person person's experience and their hidden feelings and all of that stuff. In some ways, it's more true to life to actually have that kind of portrait of somebody through time and through all the different aspects of them. But there is a power to a single concept
01:03:41
Speaker
that can be quickly articulated. There's something about that that's very, very powerful. Yeah, i mean and mean but I mean, particularly for people who, you know, have went through their life feeling like they're genuinely stupid, feeling genuinely distressed, m two to be given a name for that, and you know, it's empowering, isn't it it certainly It's even if you don't want to go down the medication route, like, like just having...
01:04:10
Speaker
just having an explanation for all of those and stressful situations your life is so important. My experience is it it can be really powerful. I think as time's gone on, more and more people are like, yeah, well, I thought I was, or I thought that was right.
01:04:25
Speaker
And you're just confirming what people sort of know already, but that's okay. That's okay as well, but because actually
01:04:34
Speaker
big people being told that they, have been right all along and even if they've been ignored or or, you know, if they've been dismissed is a powerful moment, even if, you know, it doesn't, it doesn't lead to much practically.
01:04:49
Speaker
i mean and i guess in the current climate, you know, you've got those added complications where we're sort of living in a world where, um, Getting a diagnosis is so expensive and the waiting lists are so long. I guess some people might argue that if you aren't going to want to go down the medication route, then like, is the diagnosis necessary the current climate that we live in?
01:05:18
Speaker
Yeah, and the people do make that argument. Yeah. And, that you know, a lot of the advocates for early intervention is essentially an argument that you shouldn't bother with diagnosis. You should just intervene early ah a needs-based... there's a sort of there's a There's a movement to make all the management of ADHD and autism needs-based, which is well-intentioned, but it takes away... I don't agree with it, though. I don't know if it's...
01:05:45
Speaker
and Because, I mean, like, it's always been needs-based, hasn't it? like Yeah, I mean, in theory, yeah. So, I mean, for instance, like, that's what they're talking about. They're going, oh, you know, a lot of trusts are like, well, you know, we're going to make the ADHD diagnosis needs-based.
01:06:02
Speaker
Yeah. but it's always been needs-based and it's always been relatively difficult to actually and get past the diagnostic threshold, so so to speak, because it's always been somewhat subjective to the person who is you know as doing the the assessment. So when now they say, oh yeah, that's needs-based, I feel like what we like So you're just making it even hard? I don't know. I don't feel like it's any different. i think i think
01:06:32
Speaker
I think you're right. Needs-based has always rightly been the way that education and social care work. They always should work on a needs-based basis. yeah Medicine is different. And I think needs-based management should be alongside, not instead of, diagnostic management.
01:06:50
Speaker
Yeah, no, absolutely. um And I think the problem is... Yeah, absolutely. Alongside and not instead of, that's the key. I like that. Yeah, absolutely. My worry is that there are areas where people are just going needs-based and doing away with diagnosis
Future Directions in ADHD Research
01:07:03
Speaker
altogether. And I think that is throwing the baby out with the bathwater, be honest. 100% agree with you. That is throwing the baby out with the bathwater. remember when I first became an ambassador for ADHD UK, I thought, you know, there's no...
01:07:18
Speaker
like, you know, there's no support for people to accompany the medication, but yeah who I feel as though we're getting into this sort of, um you know, we're talking about moving the care into communities and, like, less relying on, yeah, just, like, moving the care into communities and, and let's rely on, I think you might not probably care.
01:07:47
Speaker
And I feel as though it sort of switched instead of full 180. And now... It's kind of like they want to make it harder for people to get a diagnosis, harder for people to get clinical interventions.
01:08:00
Speaker
And so whilst once it was you would get medication and no support, whereas now it feels like they're trying to push towards this method where it's like, cool, no medication and like just...
01:08:14
Speaker
psychological sport but not even that like community sport i don't know know even yeah and then that to be done in some very vague way in the community yeah which is is not necessarily resourced or evidence-based so it's a it's a it's a worrying time um and i think i think again so just to go back to the paper you know if you were to do this paper again in a few years time you'd have all of that stuff coming into it as well, all of the kind of current definite and the the current um debates. So it's it's a never-ending font, this kind of debate about ADHD and diagnosis.
01:08:51
Speaker
So that's it for today. think we have committed ourselves to going back to Ireland at some point, not virtually, quite possibly. Let's go physically. Let's go to Ireland. We should go physically to Ireland. I've never been there, actually. it's great. It's great.
01:09:09
Speaker
I really liked it. um ah And um yeah, talk to talk about ACT, or ah commitment therapy, acceptance yeah therapy sometime the future.
Support for ADHD UK Podcast
01:09:20
Speaker
But that's what always happens. So that was another episode of the ADHD UK podcast. um Just to make the point that we always make, we're going to shake the tin. um oh yeah Bear in mind, we do not get any funding for this podcast. or right more Sorry?
01:09:37
Speaker
No funding at all. I'm just telling you what you said. No funding from government or any big donors for any of our work as ADHD, either this podcast or the services provided by ADHD UK, all comes from you, the community out there. So ah do not pay anything for this podcast. do not that we don't Don't look for a patron. We don't have one. but do like there No no nothing. No no adverts, nothing. Just pure content.
01:10:03
Speaker
ah um we didn't even pay the guy who may who who who wrote the theme tune because it was my son um and he was think he was 15 at the time so we couldn't pay him nice would be the legal window um so yes please do go to adhd uk if you could can do become an ambassador donate do whatever it is you you can do to to support the community the community tell people about the podcast, spread the word, and we will see you next time.
01:10:37
Speaker
you next time.