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Episode 27 with Isabella Barclay
340 Plays3 days ago
Max is joined by Isabella Barclay to talk about what factors lead to children getting an earlier vs later diagnosis- or even a diagnosis at all.
Isabella is a passionate advocate for ADHD, and needs to be listened to!
Recommended
Transcript
Introduction and Podcast Promotion
00:00:07
Speaker
Hello! Hello! And welcome to the ADHD Science Podcast. Welcome. I'm Max Davey. I'm Tess Davey, as always. As always. And we are slick as anything today on our second attempt at recording this intro. Yes, I got something in my eye. and Now you do not. Or do you? Who knows?
00:00:24
Speaker
um So, yes, we may have some new listeners today because I did a talk, which was essentially a kind of hour-long plug for the podcast. You did a talk, I stood there with a microphone and I agreed with you. That is not how it worked.
00:00:39
Speaker
You weren't even there, you were working. Oh, I thought you meant the one in Norwich. No, no, the one in Bristol that i did this week. oh But you're right, the one in Norwich was also a bit of a plug for the podcast. If you're coming from that, you're a little late, but also welcome. Welcome, welcome, welcome, welcome. Everybody, um yeah, so what's happening today? So unfortunately, it's one that you were not able to attend the recording of because you were busy
Featured Episode: Isabella Barkley's Research
00:01:04
Speaker
working. was.
00:01:05
Speaker
um wait let me Let me tell you about this episode, Tess. It was with Isabella Barkley. Isabella Barkley. Isabella Barkley is a final year PhD student at the University of Cardiff.
00:01:20
Speaker
So she's done a paper and basically what she's looking at is a very large cohort. There's this thing called the Millennium Cohort, um which is everyone who's born at around the millennium in a particular area. Which area? Some area of England, I can't remember exactly.
00:01:38
Speaker
um And it's a cohort people and they cut they follow them throughout the time, over time. So they're now about 25 years. Well, when they were being researched, they were less.
00:01:49
Speaker
So what they've been able to do is basically get a huge amount of data about a huge number of people who are not like selected. yeah It's just the whole population, a sample of the whole population.
00:02:02
Speaker
So what they it's a really rich data set. What she was looking at, of what are the factors, first of all, with which decide how how late within childhood do you get a diagnosis.
00:02:16
Speaker
So it's not about late diagnosis like my diagnosis. So the Millennium cohort, do they all have ADHD? No. so it's Do some of them have ADHD? Yes. How many people, roughly? I don't know exactly what proportion. I'm talking like 20. You're talking about very large numbers of people in the cohort.
00:02:33
Speaker
Like thousands of people in the cohort and hundreds of people with ADHD. Amazing, that makes sense. Do see what mean? Tens of thousands people in cohort. A very, very large data set. how early on life do they get a diagnosis? So what they did is they looked at seven and ten basically. And it's essentially kind of within primary school age groups.
00:02:53
Speaker
and it looked at which one's got early diagnosis and which one's got late diagnosis so it's sort of who got picked up first. classifying as early and late? Are we classifying seven as early and ten as late? Yeah basically. Okay. So obviously there's a very very large spectrum of late after you know towards the end of primary school but I think it's at least an indication of um It's definitely
ADHD Diagnosis Timing and Influencing Factors
00:03:18
Speaker
still worth looking at. It's definitely worth still worth looking at and it's an indication of trends that then will continue later on in life as to who is getting picked up and who isn't.
00:03:27
Speaker
Gotcha. um Because it's not only, she looked not only at um whether when people got diagnosis but actually whether people had symptoms and whether those symptoms were recognised. So when they had the symptoms of ADHD but not a diagnosis then that was also an interesting gotcha pattern oh of of data.
00:03:52
Speaker
um So basically what she found is there are not... Effectively what she found was the sort of least surprising things that females... Well don't spoil it. Well, okay, fine. But there are lots and lots of different factors behind it. guyssh I think it's worth but spoiling it in inverted commas a little bit because actually what... There's an awful lot to...
00:04:13
Speaker
um okay process in the episode. So females tend to be diagnosed later. gotcha people with People who are less, and relatedly people who are less disruptive and whose emotions are better controlled, tend to be diagnos yes tend to be diagnosed later.
00:04:31
Speaker
And in terms of the recognition um the most thing The thing that's most interesting and the most important is whether you also have an autism diagnosis. If you have an autism diagnosis, you're more likely to be diagnosed with ADHD.
00:04:44
Speaker
Really? I would have thought that it might be yeah different to that in that people who have autism, their ADHD symptoms might just be put down as autism symptoms. Exactly, but it looks like at a population level... But I suppose once you're in the clinician's office... Once you're in the system, you're more likely to pick be picked up. that's the And that's actually quite good for me because I worry about that as well.
00:05:03
Speaker
um So yeah, that mean that's sort of a very brief summary. Well, I can't wait to find out more. Dive into it. But but but i think it's what it's a useful summary because because there is a lot to to process in this episode.
00:05:17
Speaker
um So, shall we go? Straight in. Yes, let's go. I'll see you in the outro. Oh, one thing quickly. There is a moment quite soon after the beginning of the episode where Isabella's um audio quality, I've managed to salvage the volume, but the audio quality isn't great. I've done what I can with my limited skills to fix that. But yeah, don't don't switch it off because for 20 seconds, she sounds all kind of crunchy. Tenty.
00:05:45
Speaker
Tenty seconds. That well-known number, tenty. um ah Yeah, so don't switch it off. Yes, it does come back. Yeah, it does come back. Exactly right.
00:05:57
Speaker
Let's jump in. let's jump in.
Isabella Barkley's Research Focus
00:06:00
Speaker
Hi, FutureMax here. um I got it slightly wrong. um Isabella looked at to data points at 7, 11 and 14.
00:06:10
Speaker
um So I was slightly wrong on my summary because I wasn't expecting Tess to have asked actual questions. um But I suppose that's more for me. So anyway, that's the correct answer to her question about Isabella's study.
00:06:25
Speaker
Just so that's because Isabella runs through quite quickly. So just to say it's 7, 11 and 14. OK, bye. OK, so welcome, Isabella, to the ADHD Science podcast. um If you could introduce yourself to the to listeners ah and we'll crack on with our interview.
00:06:43
Speaker
Yeah, fantastic. um Yeah, so my name is Isabella Barclay. and I am a third and hopefully final year PhD student at Cardiff University. um And yeah, I research ADHD. I also have ADHD diagnosed a few years ago. Yeah.
00:07:00
Speaker
Great. um And we I picked up really a pick a paper that you had put out as one of the authors about late diagnosis in ADHD and and and sort of some of the reasons why that happens.
00:07:16
Speaker
So that's obviously something that's very, very pertinent, I think particularly to the ah audience um that ADHD UK connects with, a lot of adults diagnosed late in in in adulthood.
00:07:30
Speaker
um So that's really what we're going to talk about today. So if we can start in the absence of Tess, unfortunately, once again, it's not here for the recording. um But we'll start with the first question. It's reallys just it was this weird bit because she usually reads the question out. So I'm like, where's Tess? now What's going on? um So what what what was the question you were answering in your paper?
00:07:55
Speaker
So the question I was answering, so it was kind of a subsection of my overarching PhD question, um which is why are some people diagnosed with ADHD later than others?
00:08:06
Speaker
Why are some people not diagnosed at all? And is there a difference between sexes? and Before I go into this, I would like to note that I use the term male and female as I discuss the paper. yeah And that's just because the data that I've got um goes on assigned sex at birth, doesn't really have any information on gender and things. So, yeah, I would like to make a note of that, that I acknowledge that, um you know, sex isn't necessarily binary, but I will be using male and female um as I discuss it.
00:08:36
Speaker
Yes, mean, the the big the big the big ah study on gender diversity and ADHD is is still still needs to happen and and will be fascinating when it comes.
00:08:48
Speaker
Yeah, no, I fully, but there is such a, I mean, just amongst the people that I know who are neurodiverse, there is such a huge like percentage of gender diversity that I wouldn't want to, um yeah, erase anyone from this group.
00:09:01
Speaker
um But just, yeah, going on the the the nature of longitudinal data. Use the data you've got, yeah. Exactly. It tends to be assigned, whatever sex they were assigned at birth is ah what I have to go off.
00:09:13
Speaker
um So, yeah, that was the same when I've been using the really fantastic study, the Millennium Cohort Study. And the question that I was looking to answer um was, why are some people diagnosed slightly earlier and why are some people diagnosed slightly later and why do some people have ADHD symptoms but don't receive a diagnosis at all um within the scope of my study which was looking at people between the ages of 5 and 14 and yeah I'm trying to see if there were any sex differences there to try and explain kind of the well-known gap that is quite evident in kind of male and females pur receiving their diagnosis of ADHD in a timely manner.
00:09:53
Speaker
Yeah. um just just Just to track back a little bit. I mean, i have i am aware of the Millennium Cohort Study, but it might be worth just, ah I don't think, you know, the first Millennium Cohort Study person, unless Abby Russell's also, no, she's Alspach.
00:10:11
Speaker
So yes, yeah I think you're the first person who who's using that cohort, that that data set. So it'd be really helpful to explain what that is.
Data Sources and Methodology
00:10:18
Speaker
Absolutely. So the Millennium Cohort Study, it's a longitudinal study that was done or is being done in the UK.
00:10:26
Speaker
And there's like, you know, tens of thousands of people that included all who were born around the year 2000. thousand
00:10:35
Speaker
um The data was collected periodically. So i am interested in the ages which were 5, 7, 11 and 14. There were some time points collected before this and some point time points that have been collected afterwards.
00:10:48
Speaker
um And yeah, basically just collects data about the people, kind of what they get up to in their daily lives. um You know, they ask them questions about their health.
00:10:59
Speaker
um Early on, they asked some questions about their their parents and stuff like that. um It's just a really rich data set of people in the UK, essentially, um that's been yeah following them.
00:11:11
Speaker
And the key is, as a cohort, as a cohort it it kind it gets rid of some of the bias of, oh, I'm just picking up people from a particular clinic or who answered a particular survey. It's it's everybody. It's just a chunk of the population that you're just lifting out and going, this is what the population looks like.
00:11:28
Speaker
And they were really good. They oversampled in like particular groups who are more likely to like drop out and things like that. So it's um quite represented quite representative. So oversampled is that they had more people who were likely to drop out. So they ended up with a more representative sample um over time. I believe so. Yeah, that's kind of what they were going for with that. But it's very well, point is it's a very well established, very respected data set that you're working from. That's the key.
00:11:54
Speaker
Yeah, fantastic. And so what, how did you, obviously you would look at who's been diagnosed and you'd find that out from GP records or? So unfortunately this one wasn't linked to health records, but they had a question ages five, seven, 11 and 14, where they asked specifically, has your child been diagnosed with ADHD? Which I could answer yes or no. Yes or no. Or just didn't answer.
00:12:19
Speaker
So that's how I determined whether they'd received a diagnosis not. So that's less perfect, but but theyre also health records have got their own problems as well. um and And how did you find, i know we're sort of div diving a little bit into your findings, but I'm just sort interested.
00:12:38
Speaker
How did you find the people who had the symptoms but hadn't been diagnosed? So that was using something called the strengths and difficulties questionnaire, which is a parent reported um questionnaire ADHD symptoms, which is like clinically kind of like, um ah like it has a clinically of like tested and cutoff point for like high symptoms. So yeah there are like yeah approved approved high cutoff, medium and low and stuff like that. So i took people who kind of scored above the high threshold
00:13:09
Speaker
and um on the SDQ for ADHD related symptoms. Yeah, and that's mainly focusing on hyperactivity, isn't it, really? But that's probably a reasonable marker. Yeah, more hyperactive questions than inattentive questions. and Inattentive questions.
00:13:24
Speaker
And um the SDQ is is absolutely standard instrument. It's used absolutely all the time. yeah um Amazingly well used. okay So again, you've got lots of robust stuff going on there. So time to ask you, what did you find with your data set?
00:13:38
Speaker
Well, yes, no, that that was exciting. So just ah again, to backtrack a little bit, um I had, there was a ah wealth of data in the MCS, so I had to choose what i wanted to look at based on past literature, what was going to be viable sample sizes, especially because i wanted to potentially look at sex differences, things like that.
00:13:58
Speaker
And um the factors that I ended up looking at were cognitive ability, parental depression or anxiety. maternal higher education hobby frequency autism diagnosis physical activity emotional dysregulation and then I used the other SDQ um things which were pro-social peer problems conduct problems and emotional problems so that is what I looked at um with um yeah i so so think i probably missed a few of those i mean i think it's probably it sounds like it's chosen on the basis of things that we know have been shown previously to affect the severity of hd symptoms and also people's chances of getting a diagnosis so you're you're drawing on an existing
00:14:44
Speaker
um literature china yeah what's known what's been proven what's just kind of you know being assumed because always be like one of those things where i'd speak to people like oh yeah well you all know if you're smart in school you don't get diagnosed and'm like i feel like you know we know we we think we know a lot of these things but getting kind of the evidence to support that is really yeah important still important yeah yeah and also the sex differences a lot of things it kind of um the The importance of sex differences is something that's really kind of coming up recently and kind of yeah is having a ah rise in people realizing it's important. So being able to look at the sex differences um was kind of a key aspect of that and just to see if anything he could explain why there is just this difference in you know females tending to receive their diagnosis a bit later, the males and being missed and that sort of thing.
00:15:35
Speaker
So you had this really complex matrix, in a way, of different factors in for different people. And how did you untangle that and work out what what the factors were that were important
Factors Affecting ADHD Diagnosis Timing
00:15:47
Speaker
and which were just... So, I mean, I had a very long list before I before i started. Some of it was the questions weren't... Like, they didn't quite ask the question in a way that would give me, like, specific enough data. So something I was interested in was... um ah
00:16:06
Speaker
like I couldn't look at things past age 14 for example because they started asking the questions in a different way so they're asking about has your child had a diagnosis of ADHD they started asking has your child had an ADHD or autism diagnosis so some of the factors like I can't remember anything off the top head, but yeah, sometimes they change the wording. Sometimes they, um ah yeah, it just wasn't quite what I would have wanted to look at slash no not useful.
00:16:32
Speaker
um Other things where I was like, Oh, that's a fantastic question. i then looked at my data and then there was like one person. um So that obviously helped cut down a few.
00:16:43
Speaker
But then at the end of the day, it was kind of just looking at them and being like, what is going to be the most like interesting and useful information? um to know what's gonna um yeah um what's gonna answer these questions in potentially the most useful way and from then i kind of yeah um as i was building my analysis plan as like knocking off um things that you know might not have been that helpful might not be that relevant to to young people obviously my sample is only up to age 14 so yeah and there were some things i was like well actually i don't think you know stuff like alcohol use might not have been um no they're just just getting started on that by 14 aren't they yeah
00:17:21
Speaker
Exactly. so it was kind of a lot of um working out what was going to be the most useful um and then what's going to be from them. It was seeing what what of those were going to be viable with the ah specific ah kind of samples that I've created based on my definitions.
00:17:37
Speaker
Hmm. Okay, so you've got this population. I can just see the audience going, okay, this is this is a lot. Yeah, sorry. You've got these populations with different things that are true about them, and you can split them up in lots of millions of different ways to find out who is more or less likely to have got a diagnosis of ADHD.
00:18:00
Speaker
And ah also, you can... Actually, you can probably...
00:18:06
Speaker
It's to some degree connect how much of how many of them get a diagnosis and and look at that against how many actual how many of each group has have the symptoms. Yeah, so the way I did two different comparisons.
00:18:19
Speaker
My first comparison, i split up. So I had data from 5, 7, 11 and 14. I split it into 5 and 7 and then 11 and 14. So kind of part one of slightly earlier, one is slightly later. um And ah basically just look to see if these factors um were associated with either one of the earlier or the later groups.
00:18:39
Speaker
um And then I did a similar comparison where I had all those who'd been diagnosed um and compared them to those who had the high symptoms, but no diagnosis kind of investigating, you know, these factors impact timing?
00:18:54
Speaker
Do these factors impact whether they're diagnosed all? Diagnosability or not. Yeah. I don't know what that word would be. I know what you mean. yeah um and must we We should come up with one.
00:19:07
Speaker
So I think that's now the time to ask, what did you find? What were the what were the factors that were really important? So I've got my notes on the the screen. I am not relying on my memory for anything.
00:19:20
Speaker
So...
00:19:23
Speaker
so
00:19:28
Speaker
Yeah, so our work section by section. um In the first aim where I compared the earlier versus slightly rate later recognized ADHD, I found that those with later ADHD were more likely to have higher cognitive ability and better pro-social skills.
00:19:46
Speaker
which are, you know, essentially when someone behaves in a way that benefits other people, society, etc. and yeah Suggesting that these could be linked to like potential protective mechanisms for individuals. yeah And then they also make sense.
00:19:59
Speaker
um I, well, we figured because lower school achievement may lead to a teacher or like another member of staff to consider ADHD referral kind of. the the way that schools operate you know if if there's a problem um with learning grades meeting um achievements that's when things kind of get escalated and things yeah it may also be that the child who's not engaged that well in school in in lessons is not achieving and is also behaviorally very challenging Exactly. There's all sorts of things like that that all kind of may make someone more likely to be picked up um and have someone notice, whether it's noticing their ADHD symptoms or kind of being like, oh, we think that, you know, something needs to happen here.
00:20:45
Speaker
But yeah, I also found that um ah those of a later diagnosis also had lower levels of emotional dysregulation, peer problems, conduct and emotional problems.
00:20:57
Speaker
um And again, kind of highlights that where there are less kind of co-occurring problems alongside the ADHD, it could take longer um to to be noticed. But I also found that some factors had no impact on diagnosis or like no no association with ah timing.
00:21:15
Speaker
and that those were hobby frequency, physical activity, parental depression or anxiety and maternal higher education. Okay, so that's that's interesting. So, i mean, obviously, we all kind of suggest physical activity as helpful in ADHD. And I think that there's a, I mean, I i always do it, and and I would stand by doing it. But I am aware that the evidence base for so physical activity being actively helpful is not great so the fact that because it sort of that goes against the some one of the narratives of ADHD is that reason why I've got ADHD is that everyone's got these horribly sedentary lifestyles and so the children but that doesn't really I mean you would expect therefore that the more physical activity the less ADHD but you're not finding that which is interesting. That was just the timing. The variable that that I used was um quantifying it from like like physical activity in like um like clubs and stuff like that. but maybe We did consider that
00:22:12
Speaker
you know Maybe it's the fact that those of ADHD are less likely to go to the the sports clubs. Yes, that's probably true as well. um Whether that's because of behavioural-related issues or their family probably of ADHD as well and managing a calendar. They keep forgetting to pay the direct debit. Exactly. exactly after They have to They have to pay them. They have wash the uniforms, that sort of thing. There's a lot of stuff involved in that. so um yeah More stuff in that area would be... um really interesting but i think actually when i did the second aim which was the unrecognized versus um recognized it was found that in the unrecognized adhd group there was more physical activity so um potentially unrecognized ones in the unrecognized it was more that's interesting associated with the unrecognized group so whether yeah potentially you know
00:23:07
Speaker
it was acting in the way that you kind of would expect it to, or there were other reasons, um such as, I mean, if they were unrecognized, they were just more likely to still be in sports clubs, things like that.
00:23:20
Speaker
It's an interesting one. Yeah, all the ones who are unrecognised are the ones who are functioning well and then who who's who who are able to, who may have the symptoms but are adaptive, who are, I mean, there's there's symptoms and then there's function um and the two are not entirely linear. not They're not in a completely linear relationship, in my view.
00:23:44
Speaker
Yeah, I feel like you could do a whole whole thing on just physical thing.
00:23:48
Speaker
ah People do, I'm sure. Oh yeah, 100%. So yeah, it's one of those things where it's, I mean, at the end of every paper, you're like, wow, future research. Well, like like hang on a bit. That's our fifth question. So we need to, we need to, we shouldn't jump on We shouldn't, we should come back to that.
00:24:04
Speaker
Shall we, I've got two ways I want to go. i can either want to ask you about, actually, let's talk about what, what else was a factor of being recognized versus unrecognized, which obviously is a much better word than diagnosable.
Nuances of Late ADHD Diagnosis
00:24:18
Speaker
So let's do that. Absolutely. um so yeah in the unrecognized adhd group they were more likely to have higher cognition um better pro-social skills more physical activity as i said and they were less likely to have a parent with depression or anxiety um lower levels of emotional dysregulation peer problems conduct and emotional problems or a diagnosis of autism when compared to the recognized group and kind of Again, we'll just highlight that potentially um it may be helpful. These factors may be either helpful for masking and and kind of like coping with the ADHD potentially or um things that will just make it, um you know, fewer emotional and behavioral problems um can protect you as you're you're less likely to stick out essentially. um um being picked up And therefore more likely to, despite having these ADHD symptoms, fall into the unrecognized group.
00:25:17
Speaker
Yeah, because it may be that a proportion of these people are actually doing all right. So... Yes, potentially. Or it could be that they're masking their symptoms and it's a bad... I suppose... and ah over i mean, we kind of come back to it, but...
00:25:30
Speaker
there is an assumption with any sort of late diagnosis or that any study of late diagnosis or discussion of late diagnosis, that late diagnosis is a bad thing.
00:25:41
Speaker
um And that is obviously an under, no, yeah I don't necessarily, because you're just researching it, but you may have a view yourself. I think this is quite nuanced, isn't it? This is just suggesting quite a nuanced picture.
00:25:52
Speaker
Extremely nuanced. And I think this is where qualitative research becomes really quite, quite, significant, quite poignant, and you realize that yes, they may not have struggled, they might have got good grades, they might have had friends, but internally, they were battling with a lot of like self doubt and kind of like self criticism and things of that. And there are qualitative studies.
00:26:14
Speaker
And I do like you talk about quite often where it is that there is a mixture of regret that people feel when they get diagnosed in adulthood, whether like, if I'd had this early, yes, I got, you know, B's at school, but I could have got A's, I could have got A stars. Yeah, I could have done, I was doing good, but I could have done even better. And it's kind of like the that kind of you know the the grief of lost potential and the kind of combined relief of kind of finally being able to understand why they are the way they are. Because again, even if you're managing correctly, you can still get annoyed at yourself. If you're always forgetting, you you might be doing well at work, but you lose your future back. Tell it.
00:26:47
Speaker
yeah yeah i was diagnosed at 22 so i i did uh uh my my undergraduate before getting diagnosed my entire degree i was like wow all those things that could have been different had i been diagnosed when i was at school and obviously i was achieving well enough to go into university did pretty well at school i was still battling with other problems and things like that and i think that's that's that you know why qualitative research is so don't really pick up in kind of like longitudinal data it's how people feel about these things exactly because this data is is fascinating and and we're not sort of gonna you know dismiss and critique your own study a podcast i won't go that down that well with your supervisor um but but it's only one but doesn't tell you what's going on behind story what's what's the story behind all of these people all these individuals it's really important
00:27:42
Speaker
So let's move on to the...
Gender Differences in ADHD Recognition
00:27:45
Speaker
So the autism so autism diagnosis makes it more likely that your ADHD will be recognised, which is interesting.
00:27:53
Speaker
And actually reassuring for me because an awful... I see far too many kids who've been diagnosed with autism and their ADHD has been completely mixed because it's been ascribed to their autism. Yeah. And I mean, until 2013, one was an exclusion...
00:28:08
Speaker
one was an exclusion Oh, I know. i you for The other, it was a whole thing. And actually, I actually, so you mentioned how, gosh, I can't remember what your point was, but it was like how um you said how maybe this sample, um you know, they they don't get picked up because there's like, we we talked about how there wasn't as many problems things like that.
00:28:28
Speaker
I did a further analysis, which was where they had high symptoms and a high impact score. Oh, right. Yes, of course. That's also part of the SDQ. Yes. Yes. So um we we didn't do that as the whole thing because that it's not like there wasn't quite full data for that, like full coverage.
00:28:43
Speaker
um And it made the sample sizes very small. um But when we did do that for the recognized versus unrecognized, And it actually showed that the only difference was autism, where those with recognised ADHD were more likely to have and also an autism diagnosis.
00:29:02
Speaker
um Right. And that was the only difference, which is really interesting. um And so that's people with ADHD symptoms and a high impact score. the thing that made a difference was if they also had an autism diagnosis. Yes, that meant they were more likely to fall into the diagnosed group rather than being undiagnosed with high impact.
00:29:22
Speaker
So in a sense, it it means that once they've got that one diagnosis, they're kind of in the system and therefore they're more likely to have got the other one at some point. That's what it's implying. Yeah, obviously, you know, ah no call. Exactly. yeah What's actually going on underneath these numbers is really interesting. But that's that's actually quite reassuring from from from my perspective.
00:29:41
Speaker
Yeah. Yeah.
00:29:43
Speaker
And so let's move on to the to the sex differences. that's That's obviously really, really important and ah and a kind of very hot topic. Yes. Yes. I know. Yeah, that's kind of like, yeah, one of the core questions of my PhD, as well as like this paper and, you know, keep fa shut further the research that I'm doing is like like why, why are there these differences?
00:30:05
Speaker
And in this paper, actually, I only found one um sex difference, which like I was quite surprised by. um um I found that um emotional dysregulation differed. That was in the second comparison. and So that was the people who um were diagnosed versus those who were unrecognized.
00:30:23
Speaker
um So, yeah, I found that um males um who were recognized were more likely to have more emotional dysregulation compared to their unrecognized peers.
00:30:35
Speaker
um But um there was no difference between females. um And we we had a lot of discussions about this and why it might be. We talked about you know gender stereotypes and how girls are seen to be emotional and have you know maybe more big emotions things like that maybe you know um if boys were having them maybe it was just put down to you know just classic especially when you consider that these people were born in 2000 so this was like 2005 to 2014 this data was collected and you know things are improving all the time in terms of like recognizing like stereotypes and things like that and
00:31:16
Speaker
So we kind of talked about that and whether it was down to gender stereotypes, things like that. yeah So and would females have late were they more likely to be a later diagnosis they were if they did have a diagnosis?
00:31:34
Speaker
um So in this study, it was actually fairly even in the... I think it's hard because it's not necessarily late. It's only up to age 14. Yes, exactly. That doesn't really count in the program scheme of things. I call it later rather than late diagnosis. Yeah, sure.
00:31:50
Speaker
yeah it doesn't really qualify. um So whilst they were, i think it was 51 earlier, 55 later of the females, um but in um the unrecognized group, the there were 440 females, which is no no context yet. But if you look at the ratios, um the ratios um for the males to females in the later versus earlier groups, sorry, the the ratio of the females in the recognized and diagnosed group are so much larger, where there are so many more males than there are females.
00:32:21
Speaker
But when you look at an unrecognized group, it's a much more even number. Yeah, so you're saying so so overall you can just about speculate that if you're going to have symptom ADHD symptoms and you're male, you're more likely to get that recognised and picked up.
00:32:35
Speaker
Yes, that' that's what it was implying. that in the yeah in the Same as kind of what you see in population and clinical samples, generally there was a much more even sex split in the unrecognised group where you were just measuring their symptoms and they didn't have a diagnosis compared to the diagnosed group where there was way more males than there were females.
00:32:55
Speaker
And how even were the symptom distribution? Were were there were symptoms more likely in males and females? what Were high levels of symptoms more likely in males and females, irrespective of whether they're recognised or not?
00:33:13
Speaker
So are you asking, like, regardless diagnosis, was the yeah did the SDQ report higher or lower in male or female? Exactly. um i i don't know i didn't actually look at that that would be that would be an interesting point for future research yeah yeah absolutely yeah yeah mean because we talk we talk about the male female ratio in terms of diagnosis and we talk about the fact that pro pro you know 20 years ago it was about poor uh eight to one let's just say yeah i mean it different depends on huge variation it was 10 sometimes um
00:33:45
Speaker
it was ten sometimes yeah And it's gone down over time. And now we're looking at a situation where I i have haven't actually seen these figures, but I've been told on good authority that in adulthood, it is more females being diagnosed than males.
00:34:02
Speaker
I've also heard that. Yeah. Within within the and NHS. I think those are NHS England figures. Yeah. um So... one of the questions that I'm always thinking about is, well, what, what's the right level?
00:34:16
Speaker
What's the right ratio? I mean, that's the thing, isn't it? And people are going on about, oh, well, you know, all these people are getting diagnosed now, blah, blah, blah, overdiagnosis. And it's like, what's, you, we can't know what's overdiagnosis and what's catch up.
00:34:28
Speaker
what What, especially if it is particularly females getting diagnosed in an adult, a lot of catch up. It's, they should have been diagnosed earlier. Must be. And they weren't. And I think it won't be, you know, for another decade or so till we can actually work out what an accurate, um like actual accurate representation of it is in the in society.
00:34:47
Speaker
Yeah. yeah Yeah. Let's drill down to the sex differences because that's the subject of your overall PhD, I believe, and and is probably the thing that I think is probably the the listeners are going to want to know about most. Yeah.
00:35:04
Speaker
Stepping slightly away from this paper to your broader knowledge and and and and and research, why do you think women, again, using that term in its broad sense, um are diagnosed later?
00:35:22
Speaker
So my um my research group, actually, this is kind of our overarching aim. um So my my supervisor, um Joanna Martin, has done quite a nice little summary paper on this, um which is fantastic.
00:35:34
Speaker
um And it's down to... I mean, um a mixture of things, obviously everything is ah made up of little bits causing impact, um but things like um the diagnostic criteria primarily built on um kind of ah male experiences and how... um yeah how males are typically presented with the condition um you've also got things like uh stereotypes that kind of plays into it um you've got things like alternative diagnoses so mental health in particular um you know more commonly diagnosed um kind of in young people in like females and how that might overshadow um
00:36:20
Speaker
diagnoses and things like that um of adhd like might overshadow adhd symptoms um Because there's an awful lot of people being given anxiety, depression diagnoses or personality disorder diagnoses. And then and finally, I mean, not not that you can't have anxiety and also ADHD. You very much can.
00:36:40
Speaker
Yes. But but ah the ADHD, which may be underlying it or also in the mix, is is not being picked up. Yeah. And I've read similar for eating disorders and things like that. And again, whilst it's you can have both, but the underlying thing might be ADHD. And once the ADHD is managed, you might find the other things like eating disorders, depression, anxiety, much easier to manage and OCD as well, I think.
00:37:07
Speaker
um but all those things that obviously completely can co-occur it sometimes helps to diagnose the underlying adhd and um kind of help manage that and that in turn helps management of the other things but yeah and in terms of depression anxiety as well it's it's much easier to get a depression or anxiety diagnosis um and the in the uk definitely um so i imagine that also you know kind of comes into it a little bit i mean yeah you can go to the doctors and they'll quite easily um you know confirm or deny whether they think you have depression but adhd requires referrals and waiting lists huge waiting lists mean of course that's one of the other the problems with actual function of the system oh yeah um which we we seem to mention every single episode yeah i feel like it's it's not was about to say it's an elephant in the room it's not even the elephant in the room it's the party in the room that everyone's talking about but no one really wants to be there know
00:38:02
Speaker
Yeah, yeah, yeah, absolutely. um Yeah, I mean, it is it is the the number one issue at the moment. um Slightly beyond the scope of this particular podcast, but certainly not the but scope of ADHD UK's work, which we are we are very heavily involved with trying discussions about that.
00:38:19
Speaker
um Okay, so... We've got this these sex differences. um what i mean, I'm not saying this is something that I i believe, but it is said it is said that there's something about being female, the chromosomal stuff or hormonal stuff, that is
Challenging Myths and Advocacy for Equal Recognition
00:38:41
Speaker
somehow protective. And the reason why girls and women are diagnosed later is that they're simply not as severely affected by ADHD.
00:38:50
Speaker
um Now, I have some thoughts about that, but I wanted you to go first. Yeah, so I think that's an interesting point that is made fairly often. And I think there's there's kind of two ways to look at that look at it.
00:39:03
Speaker
um So there's the way that... women and girls are perceived. So that is the way that, you know, especially with ADHD, like they're not expected to have ADHD by a lot of people. So it's not necessarily interpreted that way. And like there are, you know, there are studies where they, they write ADHD symptoms on a card and if it's got a boy's name, they'll identify ADHD. Yeah.
00:39:26
Speaker
Yeah. go they they won't and that sort of thing I think yeah there's that way your Bayesian priors when you're coming into a ah scenario and you know whether it's a boy or a girl your priors are different exactly like what like it just stereotypes essentially so there's that way of looking at it and then there's also um and again this is probably more um sorry this is probably getting less of a thing hopefully as society kind of progresses but the way that um the girls are socialized um compared to boys and you know they're and they're encouraged to be more um social perhaps and things like that whereas as boys have a bit more of a leniency
00:40:06
Speaker
um And I ah definitely don't think this is true for everyone. And I do think this is improving. um But, you know, these things stick around for for for a long time before kind of, you know,
00:40:20
Speaker
everything can even out and people stop giving dolls to girls and boys get electric cars sort of things um yeah so the the way that the girls tend to be socialized is in a way that might encourage you know perhaps more um or like encourage less visible symptoms you know they might be twiddling their hair rather than throwing paper airplanes Yes, that's a very good, that's an excellent, very lovely calculation of the difference, isn't it? But it been internally, it probably feels the same.
00:40:51
Speaker
I mean, I think one of the things i always say to this this kind of point that people make, which I i don't think is particularly helpful point, um is that if you if you look at the the state in which the mental health of women were at the point of diagnosis.
00:41:06
Speaker
And I don't have necessarily a huge amount of data on this, but we know that the the state of, they often women come to a diagnosis of ADHD already in in mental health crisis, whereas men would often come through school in more of a, or perhaps a kind of um disciplinary crisis within the school system or a learning crisis, but not in that kind of mental health crisis in quite the same way although obviously sometimes it does so to say that it's not affecting that that suggests to me quite similar to what you're saying in that it's affecting people but not in a way that society it's it's affecting girls but not in a way that society actually picks up because it's not disruptive to others so I think that's
00:41:50
Speaker
And yeah that the kind of key takeaway from my thing was that like, even if people aren't having these these emotional behavioral things that are kind of, yeah, disruptive and being picked up, they still have ADHD symptoms at the end of the day.
00:42:04
Speaker
And regardless of whether or not people around them are perceiving that as being a problem, if why stick around and wait and find out? um The sooner people can um understand their own brains, put management like techniques in place, the better things are going to be for them in the long term and that the long term outcomes of um unmanaged ADHD are going to be better for them because they'll have had the best chance.
00:42:29
Speaker
so So that does bring us on to implications, which is our our third question, of course. um What would you say, the the data that you're looking at in the round, what's the implication if you're a clinician, if you're running an ADHD service, or you're ah actually perhaps if you're ah like a health authority or ah ah a commissioner going, how do we make sure that ADHD gets picked up efficiently within our our district, within Cardiff, for instance?
00:42:56
Speaker
I just think that if ADHD symptoms are identified, which I think is possible with or without, you know, behavioural or emotional things and things like that, they should be taken as seriously as they would be in somebody who is perhaps being picked up in other domains.
00:43:13
Speaker
And that um just the recognition that there's more going on than you might notice, like particularly in school, particularly, you know, in females, that and adh adh she symptoms owed ADHD symptoms ADHD symptoms.
00:43:27
Speaker
um and So can you just say what you mean by that? the symptoms the yeah The symptoms are the symptoms. They have symptoms of a condition that could be managed with techniques or advice or medication or anything. And yeah, they're kind of very much linked with the behavioural emotional and other things, but are...
00:43:53
Speaker
unique in their own way and yeah if you have adhd symptoms and you if you have enough to meet a cutoff you have enough to meet a cutoff yeah and that should kind of be obviously you understand schools limited resources clinics of limited resources they will probably want to prioritize some over the others but you know that shouldn't come at the uh the expense of um others Yeah, I think because there are some clinics who are who who are kind of saying, well, if you're not you know if if you're not having any if you're not failing in school and if you're not if you if you're not falling behind in school and you haven't had any exclusions, then you you know and don't get referred in.
00:44:35
Speaker
And that's very dangerous, I think, for exacerbating this kind of... you're waiting for a later life crisis, you know, like, particularly in women, it's like, you know, when they have kids, um and they suddenly have to look after everybody's lives and their own, or, you know, go menopause and have hormonal changes, when people go to university, when things kind of go up in the air, and kind of the longer you leave it, you're just kind of like, waiting for things to become severe enough for it to be a crisis, when you could step in beforehand, and stop people from reaching crisis points, um which is possible if people are,
00:45:07
Speaker
equipped with the resources um as early on as possible.
00:45:14
Speaker
And, and what I suppose, and I suppose that brings us on to the next question, which is, what are the implications for people with ADHD themselves, or people who have the symptoms who may not have a diagnosis yet? What are the implications of actually, what would you say to them just generally, not necessarily just from your paper, but from your research and from your you know experience?
00:45:35
Speaker
Generally, I'd say if you think you have ADHD symptoms, that is enough to implement ADHD management techniques, even if you only have like, you know, a few, but you think you've read this tip for an ADHD person, which is, you know, um using a specific type of planner or, you know, body double on but body doubling.
00:45:54
Speaker
if it works for you, it works for you. You don't want to kind of look into it anymore than that. People like, oh, well, you know, know, maybe I have ADHD, but probably wouldn't meet the criteria. I'm like, well, I don't care if you find something that is meant for ADHD people that helps you.
00:46:08
Speaker
Um, implement it, put it in place, yeah download an app ah that you check things off, like make a fancy to-do list. um So that's kind of what I tell people. That's what I tell my friends who come to me about this sort of thing.
00:46:23
Speaker
um i kind of I found my paper quite um almost quite personally validating as well in the fact that there are other people out there who... So like I said, like obviously, i mean I'm doing a PhD. I achieve fairly well at school. I have like a wonderful network of friends, things like that. And obviously, i've I've struggled with a lot of things. I mean, I have diagnosed ADHD, so um i have had my difficulties.
00:46:50
Speaker
And there is kind of that almost imposter syndrome... with having ADHD but still kind of doing things that stereotypically you might not be expected to do. As in your you're not you're an imposter as an ADHD person.
00:47:04
Speaker
Yeah exactly like maybe they don't have ADHD and it's all fake as well as obviously imposter syndrome that comes with a PhD in academia in general. or being or being a doctor exactly exactly imposter syndrome everywhere and that you know there are loads of unrecognized people and people who are recognized earlier who are struggling and it is just potentially those around you who just aren't recognizing your specific struggles as um you know yeah so for me the message if you're struggling even if you're not showing any of these
00:47:43
Speaker
disruptive behaviors, even if you're, you know, you're getting B's or whatever, ah you know, it's up I know what you're saying, the person who looks back and says, I could have got A's, but actually for me, it's much more important is I could have been happier. I could have been under less stress. myself I could have under understood why I struggled with these things.
00:48:01
Speaker
And yeah, I think, yeah, if if you're if you're having these these thoughts and these feelings, it's worth speaking to someone. Even if, again, you're like, oh, I don't know, I don't know. Speak speak to speak to your GP. um Speak to, like, a a psychiatrist, like ah like, anyone who is kind of, like, trained in, like, like that sort of thing and yeah discuss with them and it was we we have a youth advisory group of neurodivergent young people who we work with um with our research which is really great so it's been kind of really useful working with them we've got one coming up this week actually
00:48:37
Speaker
um So that's also really nice because we can say to them, like, do you think that this research is useful? And they're all like, yeah, it is. It's fantastic. um It's answering questions that they might have or things that they're like, we think this is true, but we don't have, you know, the the evidence, like, you know, big evidence to support it. We just have what we've been chatting to our friends about.
00:49:00
Speaker
um So I think that's also something quite nice that's come from the paper, and the fact that, you Yeah, not only obviously my lived experience is just my lived experience. um We have these young people as well that we um we talk to when we're developing stuff. and
00:49:16
Speaker
sure Okay, fantastic. Sorry? sorry was saying you're worthy of exploring ADHD management and diagnosis if you have the symptoms. so Yes, exactly. I mean, and I think that's right.
00:49:28
Speaker
umm I'm not advocating necessarily that everybody can get, ah you know, a diagnosis on demand and and and that we do away with the process of assessment. But if you have the symptoms and you find some stuff that helps you from the ADHD bag of tricks, absolutely, you should use them. There's no question about that whatsoever, particularly as a...
00:49:46
Speaker
and you know um well actually at any age but but as a child obviously somebody would be doing it for you on your behalf yeah most of the time but i mean that's always been the position and saved me a lot of hassle it's important to do that you can start getting on with it before they get anywhere near me and clinically um okay fantastic so what i mean you're obviously in the middle of a phd so this slightly answers itself this question but what what is the next research what from this paper, from this data, from the millennial cohort, it's the millennium cohort, ne the not the millennial cohort. in The two thousand cohort of millennials, yeah which is a different thing. yeah
00:50:28
Speaker
yeah um I suppose when they first started it, they hadn't thought of that potential confusion 25 years down the line. um No, of course not. um And ah so, what watch What would you like to do next, either with this data set or or what would what comes from this paper that you would like to to look at next?
Future Research Directions
00:50:48
Speaker
So I've actually just started kind of on my next study, which is I'm using a different data set, which is also really cool. It's um the Child and Adolescent Twin Study Sweden, which is a Swedish longitudinal study of twins.
00:51:03
Speaker
um So I'm kind of building on what I did in the MCS. um And in this one, they um are directly connected to the twins. the the the health record so I can have yeah exact age of diagnosis.
00:51:17
Speaker
So I'm kind of going to be using that data to kind of build on what I've, um you know, like particularly like the autism stuff I can look at again in this data set, but with kind of more exact um age of ADHD diagnosis um and also also goes off a bit older as well.
00:51:34
Speaker
um So, yeah, that's that's what I'm going to be looking at next. Very similar questions. Why are some people getting diagnosed and why some people not getting diagnosed despite having APHC symptoms?
00:51:46
Speaker
What's impacting on um the the age at which people are getting diagnosed? Is there anything standing out here? And then, obviously, what are the sex differences?
00:51:57
Speaker
um Yeah, absolutely. What's differing between the groups? what it Are these things potentially associated with... um ah why some females are often diagnosed much later than males or is it beyond the scope of the study which happens yeah yeah of course absolutely and and you're you're using the swedish the Swedish one because they have this phenomenal national birth registry where everybody but basically gets all of their data captured and they have this amazing gold mine of information that people like can mine so
00:52:31
Speaker
can canine um I suppose one one thing that's been sort of nagging in at the back of my mind is um just to go back to your list, is what's the relationship between family income and diagnosis? Do we know that?
00:52:46
Speaker
um I think it's one of those really, so um the thing with that sort of thing, it's obviously very linked to like, you know, socioeconomic um status, things like that.
00:52:56
Speaker
And it's just so interlinked with ADHD generally, generally when you consider that ADHD is so heritable um and, you know, people um with ADHD, particularly when it's unmanaged until like, or unmanaged at all,
00:53:15
Speaker
at all yeah um good yeah um you know they're more likely to struggle and like you know not um do as well um financially um work school and things like that and you know then they are likely to have offspring also with adhd um so it's just very interlinked so when you're looking at people when like their family income you've then got to consider the the parents and they probably have some ADHD symptoms there. Yeah. um And it's just all very interlinked. And I feel like the arrows would be going back and forth, back and forth. ah
00:53:49
Speaker
All over the place. Exactly. um And it's just, yes, something to consider when, yeah, looking at all those kind of factors that, you know, parents are likely, more likely to have ADHD than parents of offspring with no ADHD. Yeah.
00:54:05
Speaker
same Yeah, and I think that's right. I think there's a little bit of a um movement, there's bit of a tendency to make a distinction between people who have difficult upbringing and ADHD and and somehow the the difficulty of the upbringing is bet is blamed for the ADHD and and other people who've got perhaps a ah little bit of an easier time who have purer ADHD in some way.
00:54:29
Speaker
I've always rejected that. And I think because I think the the the The kids in the difficult background, they they just have ah worse they have a worse time of it. Their function is generally worse because their environment is more adverse.
00:54:42
Speaker
but But the ADHD is exactly the same. i I've never seen that distinction and and i ah kind of I really want to reject that. Yeah, no it's it's about scaffolding and what support networks you have around you. you know If you've got more money, you're more likely to you know yeah put them into after school clubs that will be stimulating. You're more likely to be able to afford just the the basic settings.
00:55:06
Speaker
but when When you're more financially stable, you're more you're less stressed. you're able Yeah, exactly. Absolutely. deal and manage with everything better and you're more likely to have a job that has regular hours exactly and you're good be there at the weekends and evenings anything like that it's about adhd management i in my opinion rather than you know more like more or less adhd it's just yeah the ease i mean everything everything's worse if you have no money so that is true yeah i'm a phd student so yeah sorry exactly
00:55:39
Speaker
um Well, okay, that was all I wanted to ask you. Was there anything that you particularly wanted to bring up or or or one of the anything that you particularly think is a a really important message from your work?
00:55:51
Speaker
I think I've covered everything that I wanted to about the paper. um And I've also, yeah, I'd like to say I'm i'm very focal vocal about the fact that I have ADHD. And I just think that's so important. I think having people with lived experience, it researching the things that they have lived experience in is something that should be you know shouted from the rooftops. I think it's a really yeah I sounds like I'm really bigging myself up I think I bring a really valuable insight into yeah no I think that's that is a really important point to to to end on I haven't done a survey but we've done 25 uh episodes of the show and I think
00:56:32
Speaker
I think we're approaching a third of of our respondents who also have ADHD. But i suspect I suspect that the people who have ADHD, who are also researching ADHD, are the ones who reply to my email.
00:56:46
Speaker
because they're the ones who want to talk about it. Yes. hundred Yeah. Almost 100%. I'm putting statistics into something that doesn't exist. But yes, no, I think that is definitely the the people that want to speak about it, people who want to raise awareness, is because they're just so aware of how important it is to. Exactly. Yeah, yeah. that's i think I think that's what that's my feeling anyway um But we'll see.
00:57:09
Speaker
um i may i may I may collect that data for a Christmas special or something. I don't know. nice here we go All right. Well, thank you very much, Isabella. And goodbye. yeah Yeah, thank you so much.
00:57:23
Speaker
Okay, so that was Isabella. Yes. Thank you, Isabella. Thank you Isabella. And hopefully, I mean, she's she's embarking on some quite interesting stuff now with some other kind of data sets. So she might be someone to watch for the future.
00:57:36
Speaker
Yes. And the other thing that you didn't know is that she or herself has ADHD. So she's a sort of passionate advocate for it's people getting picked up. Lovely. And getting their diagnosis. So yes, definitely someone who was very lovely to meet and hopefully will meet again.
00:57:52
Speaker
um Anything else to say today, Tessie? How are you doing? I'm alright. I'm quite tired and I've got here to work tomorrow. So, other than that... Well, in that case we'd better wrap this up quickly. we did tend to We did drag on a little bit in the intro. But like you said, I think that's important. Yeah.
00:58:07
Speaker
So, yeah the only other thing to say is if you are new to the pod, you might not have heard of the Facebook group, please. I know Facebook is evil and Mark Zuckerberg is eagle evil. is eagle. he's evil He told you was tired. is. He's working on the inside with the Americans. He's an evil eagle. Yeah.
00:58:24
Speaker
But that is the best platform at the moment. Yes. For having a group, so we have it on there. um Yes. So... We'll see you there. See you there. we'll see you in our next episode. Yes, which is going to be soon. Follow, subscribe. Then you'll be notified when we release our next episode. A couple of weeks. We'll be right there. A couple of weeks and we'll get out.
00:58:46
Speaker
Alright. Bye.