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ADHD Science episode 2 with Ana-Maria Butura.
291 Plays1 year ago
A genuinely cutting-edge chat with Ana-Maria, one of the first people in the world to properly study masking in ADHD.
She's too busy to be on social media so here is her KCL profile: https://www.kcl.ac.uk/people/ana-maria-butura
Recommended
Transcript
Introduction to Anna Batura and her research on ADHD
00:00:08
Speaker
Right, so episode two of the ADHD UK Science Podcast. How exciting. Very exciting. And Anna Batura has joined us today. So if you just introduce yourself and we'll talk about your research interests in ADHD. Take it from there. Hey, so I'm Anna Maria, Anna for short. I am a PhD student.
00:00:30
Speaker
at King's College London. I am Edmond Sunu the Bach's PhD student, to be more exact.
00:00:39
Speaker
And I am in my third year. It's a four year PhD. So I'm nearly there. I can see the finish line. And my PhD focuses on ADHD in girls and women.
Understanding Masking in ADHD
00:00:50
Speaker
And I specifically, I'm looking at the masking phenomena. So kind of trying to see whether the
00:01:04
Speaker
the fact that the girls with ADHD are being diagnosed late, if that is due to them masking their ADHD symptoms. And we're looking at that in mind.
00:01:17
Speaker
a few studies in loads of different ways. So that's a kind of general idea. Well, I mean, what ways are you looking into it? What are the methods you're using? What are the kind of ways of looking at this question? In fact, it might be worth before we ask that question just to quickly describe what you understand by masking.
Insights from Qualitative Study on Masking
00:01:37
Speaker
OK, so I guess that was the
00:01:45
Speaker
Masking in ADHD specifically hasn't really been researched much, so I think
00:01:51
Speaker
we kind of went into it knowing more about masking in terms of autism rather than ADHD. I think from my perspective what I see masking to be comes from personal experience and you know experience from friends and you know kind of just kind of growing up with ADHD myself. So I went into it with a different
00:02:17
Speaker
view on it than maybe what the research out there is. And we've kind of looked at that in our first few studies. So we now know a bit more about how it looks like in ADHD based on the first study that we did. So we did a qualitative study, which is basically
00:02:41
Speaker
interviews, very long interviews with women that have a diagnosis of ADHD and their family members. I'm not sure if you want me to go into that a bit more.
00:02:49
Speaker
Oh, very much. Absolutely. Yeah. Okay. All right. So yeah, so the the interviews that we did, I did, at the start of my PhD, was kind of the start of everything. So we wanted to hear directly from women with ADHD. And from there, we basically went into loads of different avenues. So the interviews were very, very open, we wanted to find out
00:03:19
Speaker
literally just talk to women with ADHD and kind of talk to them about their life stories.
00:03:27
Speaker
So I interviewed 30 women with ADHD and 30 family members, mostly mothers, and we asked them about their experiences, life experiences, so pre-diagnoses, how they kind of describe themselves from a very young age up until now, their difficulties, their strengths, their experiences.
00:03:49
Speaker
getting a diagnosis, the clinical experience, their school experience, why they think that they got an early diagnosis or a late diagnosis, so pretty much everything that you can cover. And out of that,
00:04:01
Speaker
Um, we didn't specifically, I mean, we didn't go into it with, um, structured questions because we wanted to find out what was important to them. Um, so, and out of that came, um, a lot of masking. So after we analyzed it, we looked at, you know, all the themes and things like that that came out of it. Um, and without asking any masking questions specifically, uh, the topic of masking came up.
00:04:28
Speaker
that spontaneously arrives? Yeah, in most of, if not all of the transcripts, the interviews basically. So to kind of answer your first question about what mask, what we think now masking looks like in ADHD,
00:04:48
Speaker
And we're still kind of trying to separate it because from ADHD, from autism, because a lot of the women that I interviewed also had comorbid autism. So it was, but we kind of, we can see a slight difference between the way that
00:05:07
Speaker
you know, girls with ADHD mask and girls with autism mask and that revolves mostly around social aspects. So it seems like the masking that happens in ASD is a lot more socially, what's the word, motivated. So they, you know, kind of, you know, maybe are a bit more
00:05:33
Speaker
they, you know, seclude themselves or they hide certain aspects about their character so that, you know, not to be, not to feel embarrassed or, you know, in kind of social situations or maybe they try to mimic other people. So, you know, if someone says something in a certain way, they try to copy that. So, you know, they, you know, things like that, basically. Whereas with ADHD,
00:06:01
Speaker
there is an element of that, but it mostly revolves around hiding ADHD symptoms. So hyperactivity, for example, especially, well, obviously, we just interviewed girls, but things like if
00:06:20
Speaker
in a school environment, for example, and they really, really need to move and they need to get up and they have this kind of urge of moving. Instead of doing it as we know boys are more likely to do, they would get up and they would be a bit more disruptive.
00:06:39
Speaker
girls don't tend to
Adapting Environment to Fit ADHD Symptoms
00:06:41
Speaker
do that. They tend to do it in a more socially acceptable way. So, you know, asking to go to the toilet a lot, asking to, you know, be kind of like a teacher's pet in air quotations. Be the person that hands out all the papers in the front.
00:06:58
Speaker
Yeah, exactly, exactly. So kind of doing things in a socially acceptable way. And this is either conscious or subconscious. And we I've spoken to the women and they said, some of them said, you know, I've never really realised that that's what I was doing. But now looking back at all of the teacher reports, you know, they were they were saying, you know, because they had to go through them for their diagnoses and things like that. And
00:07:23
Speaker
you know, and they were saying, oh, my teacher said that I was going to the toilet like eight times a day and I had to get checked up to see if I had like a urine infection. And you know, I didn't realize that.
00:07:35
Speaker
Why are you going to the toilet so much? I don't even need to go to the toilet. And so yeah, loads of these kind of things and they, you know, obviously looking retrospectively, you kind of tease things together and you're like, Oh, that's why because I needed to move and I didn't know how. So, so yeah, so masking tends to be more around those types of things. With attention as well, you know,
00:07:59
Speaker
rather than kind of admitting that you haven't heard what the teacher said, you either ask the person next to you or you specifically place yourself in situations where you know that you will
00:08:15
Speaker
be, you will have that kind of benefit. So sitting next to a, you know, someone that you know will have loads of notes down so that you can kind of copy them or, you know, trying to catch up a lot so that the teacher doesn't notice that you haven't, you know, missed out or things like that, basically.
Development of ADHD Masking Questionnaire
00:08:35
Speaker
Yeah.
00:08:36
Speaker
Yeah, I spend just copying my friends notes and lessons is outrageous. Yeah, yeah, exactly. Maybe also placing yourself in social groups that kind of match your character in a way. So and this is quite different, I think to autism, I think autism
00:09:04
Speaker
with ADHD, they try to almost change themselves to fit in with others. Whereas I think with ADHD, and what came up quite a lot is, you know, if you are very, very hyperactive, you will
00:09:18
Speaker
girls will more likely hang out with boys or they will more likely, you know, be in sports groups and things like that. Yeah, I completely understand that because I was the exact same. I would just not have friends that were girls. I would just be surrounded by boys all the time and always be in the basketball court and always, you know, and
00:09:41
Speaker
Yeah, so and that seems to be, you know, more the case where they just try to surround themselves with people that are like them.
00:09:51
Speaker
so that they kind of don't be this kind of outcast. So that's what we've found so far, which is really, really interesting. But from this data, we are now trying to separate the ADHD masking traits and the autism masking traits. Obviously, they overlap a lot, but I think there are some differences, which is really interesting. And hopefully,
00:10:20
Speaker
we are going to create a masking tool, the first masking tool for ADHD. There is already one for ASD, but I've now created a questionnaire, a kind of screening tool that will
00:10:36
Speaker
hopefully be published very soon. Amazing. You've been poised for some time, which is very unlike you. Can you think that the overlaps between masking in girls with ADHD and girls with autism is because of some of the overlaps and symptoms between the two conditions?
Personal Reflections on ADHD Diagnosis
00:10:59
Speaker
Yeah, yeah, definitely. And I think that's why we didn't make a point about like, only recruiting girls or women just with ADHD, because, you know, in real life, obviously, they most
00:11:16
Speaker
women do have overlapping symptoms, even if they don't have a diagnosis of ASD. So I think whilst it is important to separate those just to see where it kind of comes from, at the same time, I think it's quite hard to completely separate them because, you know, most of us with ADHD also have those other symptoms. So yeah, so I do think that that's probably the reason.
00:11:42
Speaker
And how did your interviewees experience, how did it compare to your own experience? You've mentioned that you grew up with ADHD. I suppose I'm slightly turning this round to interview for your story, because I'm very interested to know what that is.
00:11:55
Speaker
Yeah, so I got diagnosed quite late. It was about 15 years old is when I got initially picked up and then it took quite a while for me to get treatment. I only started treatment at 20 and that was because it took me quite a while to accept the diagnosis. Which, yeah, I think I definitely masked
00:12:22
Speaker
a lot a lot and I see that in my school reports I see it in you know what families say and and I think only now am I starting to really
00:12:34
Speaker
in a way not do that because I'm accepting myself as a woman with ADHD rather than, you know, trying to mould myself to fit into society. But anyway, that's it. That's another rant. But yeah, so I got diagnosed, as many, many girls do around that time, late teenage years, and I just kind of
00:13:02
Speaker
dealt with it for a very, very long time by myself, not really understanding myself, not really
00:13:13
Speaker
getting understood I think I guess by family members and things like that but I guess that's not how I got into ADHD research but it was quite quite random so I did a I did psychology A levels and then I went and I did bachelor's in psychology and I really really wanted to go and do a clinical doctorate I think being a clinician has always been on my on my list
00:13:43
Speaker
research wasn't really on it so I kind of fell into it. I met Edmund, I was going to do a master's dissertation with him and we got on super super well and he obviously has ADHD as you know and yeah we just
00:13:58
Speaker
spoke for hours. When he came on the podcast, he was a bit circumspect about saying in that many words. So it's interesting that you mentioned that. Just to cut in, I mean, we all know who Edmund is, but Edmund Sunigabakh is, I mean, I think he's probably the most, he's probably the most important ADHD researcher I think we've got in the UK at the moment. Check out our podcast episode. Check out our podcast episode. I've looked at it. I've had a look at it.
00:14:28
Speaker
Anyway, so I think it was one of I think it was a great episode. And yeah, anyway, just so everyone knows who is the model that you use for the masking, what kind of stuff is like on there? What kind of like, what does that entail? You mean you're the questionnaire thing? Yeah.
00:14:46
Speaker
It basically separates. So we, we came up with out of the masking we came up with three or four, I should have a look more at that but three or four different types of masking. And that's this.
00:15:03
Speaker
um like social element and then um suppressing your symptoms which is literally just like if you instead of getting up and moving you sit on your hands to just stop fiddling and you know things like that suppressing your symptoms um adapting your situation to fit in with your symptoms and um you know this um i guess yeah adapting your your your um
00:15:32
Speaker
actions to be socially acceptable. So they all fit under those categories and it's for children. So it's a self-report for children and teenagers. I also really want to do one for adults. I think it's
00:15:52
Speaker
the categories are the same. It's just the way that they they've been phrased. So, you know, for example, for children now is I asked the permission to go to the toilet instead of just standing up and moving about kind of things around those things or
00:16:10
Speaker
You know, I like playing with boys more than I do with girls or, you know, things like that. Whereas with adults, that would be slightly different in terms of just works and yeah. Do you have any kind of feeling or insight either from your own experience or from the interviews about the impact of masking and why masking matters? I guess so. I think that's why that's the reason I'm doing this PhD. I think
Educational Challenges Due to Masking
00:16:40
Speaker
So if you mask your symptoms, one, you
00:16:50
Speaker
putting so much pressure on yourself to be this sort of person that you think is socially acceptable and I think you kind of stray away from who you really are and it's so much more effort trying to be this other person than it is being yourself and that comes with so many complications like you know once you
00:17:17
Speaker
First of all, if you don't accept yourself for who you are, you don't ask for help, you don't ask for support. Instead of getting breaks, as you normally would, so, you know, I know I work in the clinic once or twice a week. And once children get a diagnosis ADHD, that is in their EHCT, their Educational Healthcare plan, that they will have a break every 30 minutes, you know, and that's accepted. And that's something that, you know, children with ADHD should get. But if you don't have that, then you have to make up your own
00:17:46
Speaker
excuses or you have to suppress your symptoms and things like that and that's never a good thing you know it distracts you from your work you can't do your work properly you can't you know you're missing lessons because you're going to the toilet so much things like that so I think it definitely impacts your education also it doesn't let your teachers and your parents know that you need support
00:18:08
Speaker
you know they they think that oh um you know she's coming in with her homework done completely and you know she's um you know taking all of these tasks but really they don't know how many hours and sleepless nights have gone into you know doing that homework um you know i used to uh i used to do that lot i used to
00:18:31
Speaker
try to catch up during the night. So I mean, first of all, I had insomnia for years and years, I wouldn't be able to sleep anyway. But that that was when I was catching up on work, I was doing hours and hours during the night, trying to do my homework, trying because a simple 20 minute task would take me two, three hours, you know, and it was so hard. But if I knew that it was okay to
00:18:57
Speaker
be like that because I had ADHD, then I could maybe get some help from school, I could get a TA to help me, I could, you know, and I didn't have to have all those sleepless nights doing it. So I was hiding my symptoms from my teachers, I was hiding my difficulties from my parents, nobody knew what was going on with me and I think there's just so, as a child, there's so much, you know, weight on your shoulders to keep all of that to yourself and
00:19:24
Speaker
First of all, you know, think that something's wrong with you, that you're different to all of your peers and you don't know why. I think it's a lot.
Impact of Masking on Mental Health and Diagnosis
00:19:33
Speaker
And also, this kind of maps onto my next study, the biggest study of them all. The idea that the older you get, the harder it is to mask,
00:19:53
Speaker
So in primary school, those, yes, you still have, you still struggle and you still, you know, find it hard to manage your social relationships and things like that. But I think in primary school is easier to mask your difficulties. That's our hypothesis anyways.
00:20:13
Speaker
and so we think that that's why girls are not getting picked up in these early years because they don't have all of those, the demand is still quite low and so when they move on to secondary school they start having relationships and they have
00:20:32
Speaker
complicated social lives and you know they start maybe they also get their period so hormones come into play as well and that they have GCSEs they have A levels and it's so much harder to manage all of that
00:20:48
Speaker
um that that masking and that ability to mask drops and so and then you have um you know mental health difficulties because you have tried to suppress all of these things all you know for years and years and years and so depression anxiety other complications start to kick in um you know um eating disorders all of these make it so much harder to mask and then usually you would then end up in a um
00:21:17
Speaker
you know cams or in a mental health service and then you get picked up by them and then they say oh actually um it's not depression anxiety in this it's actually you know ADHD is hidden and that's usually how they yeah how they get kind of picked up and that was my my case anyway and many many women that i've spoken to so i think masking is
00:21:43
Speaker
is very detrimental to the individual, but also when they actually do get picked up, it's that presentation is complicated, it's so complicated by loads of these other things that is harder to like, unpick what is ADHD, what is some, you know, everything else. So yeah,
00:22:05
Speaker
But I was just asking you how that idea that masking is more difficult in secondary than primary, how that fits in with your experience. Well, I think my experience, I didn't really have to mask much in primary school. Yeah, in my experience, it was a lot easier. I didn't really have to mask in primary school because I could kind of get away with a lot of the stuff because they kind of thought I was being dramatic or I was having a tantrum or something.
00:22:34
Speaker
Then when you get to like secondary school and I hit your seven, eight, nine, I started realizing, Oh, I do need to compress this. And I started doing that. And it really, really exhausted me. And you're nine, 10. I was like not feeling great at all because I had had to learn all of a sudden how to compress some of the fundamental stuff that makes me who I am. And that was really like upsetting. And then.
00:23:00
Speaker
So I think that I can definitely see that because you're younger, you don't really need to... Do you think it's partially linked into the fact that you don't need to mask as much as well as the fact that it's easier to, because you have less to manage? I mean, that seems to me not alternative, but that's the other thing that's going on is that primary schools are just much more tolerant of these behaviours.
00:23:29
Speaker
Yes, I think there's, yeah, multiple things going on. I think, um, one year you probably don't need to mask as much because you're not struggling as much. So, and I, so there are, there's a few papers out there that kind of suggest this, but, um, they suggest that girls with ADHD have a higher threshold, um, to present. So they need, they have, they basically, um,
00:23:57
Speaker
need to struggle a lot more for the ADHD symptoms to present than boys do. And I think that plays
00:24:09
Speaker
you know quite what that kind of goes quite well with this masking you know phenomena that they they start to mask later on in in secondary school because that's when the demands sorry that's not what I meant and the demands increase so even even in year seven really that's still quite young
00:24:32
Speaker
I think when it's in secondary school is when it all kind of, you know, hits the fan. When you move, you know, yeah, when you move. We haven't run to a swearing policy for this podcast. Anyway, it's fine. We don't have to worry about it right this minute. Oh no. We could be in good trouble with Henry and the Plymouth ADHD UK. Never mind. Oh well. We're very edgy broadcasters.
00:25:01
Speaker
anyway right um yeah i mean i think i've started to unmask slightly recently which might be because of a level stress because i'm i've just started to 12 and i've kind of shifted from a more female dominated friend group to a much more male dominated friend group and i still have female friends but
00:25:21
Speaker
you know, the main people who dominate this friend group are male. And every single lunchtime we're out, we're at the shops, we're running around near the river. Whereas in my old friend group, we've just kind of sat around a table and I love them. They're such lovely girls. But I just couldn't stand just being sat there. Right. And then I saw this other friend group with a bunch of people who I like and they were going out and they were getting food and they were chucking bread at each other and picking up picking it up afterwards, save the environment.
00:25:50
Speaker
And I was like, come on, get in, that's me. And then that's where I ended up. Interesting, that's so interesting. And there was no harsh towards the others, like I'm still good with them, but it's just, I feel like the environment just was a lot better for me. And strangely, I feel like I'm more relaxed doing this dumb stuff than I was just sitting and chatting. Well, there is a kind of, I think, stereotypical view that I think, in my experience, women,
00:26:20
Speaker
Um, almost, um, what's the word? They almost internalize themselves that relaxing means sitting and chatting. Do you see what I mean? Yeah. This idea that if you're running around, it's not relaxing, but who says?
00:26:39
Speaker
was not physically relaxing, but like emotionally. I think there's also, yes, it is internalised, but I think it's important to ask where that comes from. And we have kind of started to ask those questions because of the qualitative interviews that we did. A lot of the themes also
00:27:07
Speaker
kind of revolved around where does this all come from? Why? Why do girls mask maybe more than boys? And I think what we've come to is, from the interviews but also our own interpretations, is how girls are socialised and how they are differently socialised to boys. Amazing.
Cultural Influence on Masking in ADHD
00:27:33
Speaker
sociology as well. Sorry, carry on. Yeah. And, and a lot of the women said, you know, the same thing that they, as from young, you know, girls, they asked their parents, I specifically remember now one girl, she said that she, she would be at school, she would have all of this pent up.
00:28:00
Speaker
emotion and hyperactivity and all of that because she couldn't really display at school because she would either get told off or she would be called too bossy or she would be called too crazy and then she would go home and she would and she specifically said I would go home and I would punch my pillows for hours and hours and I asked my parents to do boxing classes but they said that I was a girl and that I wasn't allowed to do boxing because I'm a girl I should do ballet or you know things like that
00:28:27
Speaker
And so she was Greek, so different culture, but also I think it happened very much everywhere. You know, I think it's quite unconscious for many parents, you know, without realising we do socialise girls differently to boys. And whether that's, you know, calling very outgoing girls, bossy or controlling or loud and kind of, you know, trying to
00:28:55
Speaker
make them take up less space in a way. I think it's an experience that has been...
00:29:04
Speaker
going on for many, many, many women and many years. And even now, I think it's a bit maybe less because we're more aware of how that impacts girls. But I think especially with girls that are not stereotypically girls, you know, they don't like to sit and chat or, you know, I don't know, just do more, more calm things. They think that that's not
00:29:31
Speaker
What being a lady is like feminine in some way in some odd way. Did you feel like you got that a lot? Because I know that obviously being raised in a family of two brothers and you, I was never really him. Yeah, I never really had that. So do you feel like that was quite a big thing when you were growing up? And I think I've discussed this quite a lot recently.
00:29:58
Speaker
because I'm taking on a project at the moment where I'm converting the band all by myself and I'm doing a lot of that stuff. And so I think since starting that, I've been met with a lot of kind of, oh, but like, do you know how to
00:30:15
Speaker
cut a piece of wood. Do you know how to screw in? Do you know how to do, you know, like, who's trusting? Did you say a van? Yeah, sorry, okay. Oh, I've seen so many videos of people doing those. It sounds absolutely lovely. It's a sort of George Clark's in Amazing Spaces kind of thing. Yeah, it is. I love that. You love that show.
00:30:31
Speaker
Yeah, so I've been met with a lot of those kind of remarks, you know, like who's who's trusting you with all of these power tools and things like that. And I think those remarks, they come a lot from my extended family, my uncles and things like that.
00:30:47
Speaker
I almost said yeah thanks uncle yeah exactly um but luckily I didn't experience that in my immediate family my I also have I have an older brother and um I feel like growing up me and him were treated very very equally um I didn't get any sort of
00:31:09
Speaker
um different treatment or expectation so that really really helped um my parents are extremely supportive and everything I do and I think even if I think even if they try to treat me in a different way I have growing up anyway I had such a huge personality and I'm a very very um uh what's the word um I forgot the word now I basically did not accept authority what's what's that
00:31:38
Speaker
Assertive. Is assertive required? Yeah. Yeah, and yeah, I was assertive, I was defiant, I was everything you would think of. Oppositional. Oppositional. Yeah, it was very oppositional. Oppositional. Explain the lesson. So oppositional, so oppositional defiant disorders is a condition.
Oppositional Defiant Disorder and ADHD
00:32:00
Speaker
Okay, it's a label that children with ADHD often get and children without ADHD often get.
00:32:06
Speaker
And so it basically means it's kind of a child who won't do stuff and just kind of yells at people and like, no, I'm not doing it or I'm just not going to go there or I'm resisting adult control. And it's sort of, it's something that's very, very common in primary school kids.
00:32:32
Speaker
and often in secondary school kids then progresses to something we would call more of a conduct disorder where you're going out of your way to stick two fingers up at the adult world. So you're truanting, you're fire setting, you're getting involved in anti-school subcultures, anti-social subcultures. So my problem is I don't really like
00:32:56
Speaker
Labeling children as oppositional defiant disorder because it places the problem in the child. Whereas most obviously, well, in my experience clinically, the problem is in a relationship between the child and their environment. Sorry, that's me basically being on a soapbox for a minute, but is that reasonable? Does it make sense? And is it a reasonable summary as kids who don't really like being told what to do?
00:33:21
Speaker
Yeah, and for ADHD kids, they often just, it's a bit of a simplification, but often they just kind of at some level realise, I can't be good. These demands you're placing on me, I just can't do it until they get oppositional. So do you think that comes up a lot more with girls? Because I feel like this is a bit like,
00:33:41
Speaker
of a wide statement but I feel like generally there is a lot more of those expectations placed on women and girls. I think it probably plays out, let's go back to Hannah because otherwise... That's what the question was too! I'm asking you about your experience as a woman. No, no, but I've experienced a group of girls.
00:33:59
Speaker
I think actually, it's probably the other way. I mean, there are loads of expectations on girls, yes. But I think this is another theme that has come up, people pleasing, and that, you know, maps in quite well with masking, you know, they want to people please so much that, you know, even if they find it really, really, really difficult,
00:34:23
Speaker
to reach those expectations, to fulfill those expectations, they will do anything to please their teachers, to please their parents. There's also rejection sensitivity. Having a very minor criticism will completely send them into crying fits and destroy their self-esteem and things like that. That is such a
00:34:53
Speaker
um like massive theme that has come up as well this really really intense need to people please and you know very very sensitive to rejection that i think they will do anything to to um you know kind of reach those expectations even if it means um destroying their sleep and destroying their mental
Improving Clinical Diagnosis with Masking Awareness
00:35:18
Speaker
health um
00:35:20
Speaker
But what you were saying about
00:35:24
Speaker
you know, their, this being a reaction to their environment, I think I really saw the difference in the way that my environment, so at home, for example, my parents, you know, they weren't very, very strict, they weren't, they definitely tried to discipline me in some ways, but it was not like at school. And so I wasn't as defiant and I wasn't as kind of, you know,
00:35:51
Speaker
oppositional at home, because my parents manage me in a completely different way than at school. At school, I was this, yeah, very, very hard to manage teenager. I was at home, I wasn't, I think that really, you know, shows kind of, it's not really how about the child or the person with ADHD, it's how you deal with them and how you manage them and understand them and talk to them and communicate with them.
00:36:22
Speaker
And actually, just to go quickly back to the oppositional behavior, you probably have less oppositional behavior in girls, but particularly up until, at least up until secondary, because of this people pleasing, and but the feelings are still there, the anger is still there, there's all of those kind of self esteem issues are still there, but they just get they just get turned inwards. I'm going to pause, because so what I was going to ask you was,
00:36:50
Speaker
One of the things that's tricky, particularly when I see somebody who perhaps at home is exhibiting quite a few ADHD symptoms, when I see them in clinic as a sort of doctor, a sort of doctor. It's very difficult because it feels to me often like they are masking, and this probably is more common in girls, particularly early, sort of late primary, early secondary school,
00:37:20
Speaker
What do you, what would be the implications of your work for, for a clinician sitting there going, well, it looks like they might have ADHD, but the school are reporting that they're, they're, they're no trouble at all. You know, they're a bit, they're a bit, they're quite chatty, but other than that, they're fine. Those sorts of things. Yeah. So I think, um, so that's another, well, I think overall that's pretty much the biggest, um,
00:37:47
Speaker
finding so far from the qualitative work, but also other research that we've done that has just confirmed that basically that girls seem to be masking at school, but not at home.
00:38:04
Speaker
And we have seen that in the qualitative piece of work that was the first time we saw this huge difference in the way that they described themselves at home compared to the way they described themselves at school and also when we talked to the family members.
00:38:20
Speaker
The mums were saying that they were having so much trouble because at home they were finding it really, really hard to do their homework and they were not sleeping and they came home with so much anger and they were just crying and they can't manage them.
00:38:38
Speaker
And then they try to contact the GP or they try to go and ask for a diagnosis of something and then they go to school and it's like, no, she's absolutely perfect. There's absolutely nothing going on whatsoever. And this has been a very, very common situation.
00:38:58
Speaker
in the interviews and so from that we then decided that the questionnaire, so we've made two questionnaires out of those interviews, one of the questionnaires was this kind of female specific sort of
00:39:18
Speaker
self-report ADHD questionnaire. So basically, it was a questionnaire that children could take that asked them about their ADHD characteristics. This was based on the interviews. And this wasn't just the, you know, this wasn't just
00:39:40
Speaker
the 18 DSM items so that surround hyperactivity activity impulsivity sorry attention and impulsivity this was everything emotionless with this regulation everything
00:39:51
Speaker
And so that was one questionnaire. And then the second one was this masking questionnaire that we created. In the ADHD characteristics questionnaire, we decided to make a home and a school one. So in one questionnaire, they could ask they could, they had like two columns, one was home, one was school. And it makes sense really, because they are in both situations, they are the only person that could
00:40:19
Speaker
answer how they behave and how they feel at home and at school. Oh I see, so this is the, because I'm so used to these questions being answered by the adults about the child, it's the young person, let's call them young person, answering about how they behave, how they feel at home, how they, that's really interesting.
00:40:42
Speaker
Yeah, exactly. And there is. Yeah, I know. Sorry, I should have made that a bit more clear. Yeah, I think and it's difficult to see it. Yeah, no, it's difficult to
00:40:57
Speaker
to kind of conceptualize that because that's what we know at the moment, you know, when you diagnose a child, you look, you know, you ask the parents and you ask the teachers, but nobody has ever asked the child, you know, the young person, how do you feel, how do you, and I think it's quite a common belief that that children and young people are not
00:41:19
Speaker
uh capable of talking about their own feelings and their own um you know being kind of like self-reflective um but there is new research and there are a few papers are older as well that show the exact opposite children as young as eight nine even younger they can talk very very um
00:41:40
Speaker
you know detailed about how they feel and given if they are asked the right answers, the right questions sorry. So yeah so that's why we thought you know it was important to yes get the you know the questions from teachers and parents but also talk to the young people themselves and yeah and so and we
00:42:04
Speaker
gave this questionnaire to about 500, 600 children in primary schools. And this is very, very preliminary analysis. But we saw quite a difference in the way that girls reported their characteristics at home based on school. So they had higher ADHD symptoms, self reported ADHD symptoms at home than they did at school, whereas boys didn't.
00:42:33
Speaker
There was still that difference, but the difference was much smaller.
00:42:38
Speaker
Yeah, I was going to ask, that was the question that I was going to ask was, yeah, hooray. I finally remembered. The question I was going to ask was whether that was also something that you noticed in the interviews. Cause I've heard about it a lot about the difference between how, the way that a young woman will act at school and at home. And obviously this isn't exclusive to young women, but it's mostly young women. And so I was wondering if that was something that had come up a lot in the interview.
00:43:05
Speaker
Yeah, it did. And that's, that was the main reason why we decided to separate this questionnaire into Hermann School to see whether that, you know, was followed. Yeah, was, so I think, so that was, that's really, really interesting. And I think, going back to the clinical implication, at the moment,
00:43:30
Speaker
an ADHD diagnosis is made if the symptoms are present in two environments, home and school. If this masking phenomena is impacting the way that they present with such significance, then this is kind of a huge thing in the clinical world because
00:43:57
Speaker
How are we meant to diagnose girls if they don't present at school? This changes how we look, how we diagnose girls massively. So I think this masking tool could be really really useful.
00:44:14
Speaker
you know, if done right and if it picks up these girls, if it picks up the traits that we want to look for. If, you know, if these girls are coming into clinics and clinicians see, well, they do present at home, but they don't really present at school, then they could use this tool to see, you know, if they do show these signs and they could then start asking more questions. Oh, are we actually seeing
00:44:41
Speaker
then for who they are, or is there something more that we should look for?
Objective Measures for Better ADHD Diagnosis
00:44:46
Speaker
And I think that's when maybe more objective tools should be used. That's something else also that I'm looking at. I'm using a QB test. I don't know if you've heard of the QB test, but it's an objective measure of ADHD symptoms.
00:45:05
Speaker
There's a few things to unpack. There's a few things to unpack. Let's go to the QB test first. Yeah, what is that? If you imagine playing the world's most boring video game. So it's excruciating. I did it. I was going to say a video game name, but I don't want the hate.
00:45:29
Speaker
So basically, a screen pops up and you either have to press a button or not press a button, depending on what you see. And sometimes it sort of encourages you to press a button when you shouldn't, which is how it kind of measures impulsivity. And you do the whole thing. Isn't that just, that's one of the games in dumb ways to die? Pretty much. I mean, anyway, yeah, it just goes on and on and on forever. And it's completely, well, it doesn't go on forever, obviously, but it felt like when I did it. Simon Says. It's a little bit, yes, I see it's a little bit like Simon Says. God, that is boring. Yeah, exactly.
00:45:58
Speaker
And at the same time, it used to be that you had to wear something. I think now that they just detect how much you're moving while you're supposed to be sitting still in front of this laptop. They still do that. They're working on changing that, but I think the system is a bit more complicated than they probably anticipated. But yeah, you still have to wear this kind of reflective ball on your head and there's an infrared camera that looks at you and marks your activity.
00:46:26
Speaker
And I have to declare an interest because I'm deeply skeptical. It seems to be very much the rage locally and everyone wants to spend lots of money on it. And I'm deeply skeptical that it can help in more than a few cases. I think that having said that, the masking girls may be a subgroup of the overall ADHD population where it is helpful. But I see it as very much, it is very much,
00:46:53
Speaker
There's a lot of enthusiasm for it at very high levels of the NHS.
00:46:58
Speaker
it costs a lot of money to put it into a service and you always have to lose staff in order to put it in place. Anyway, sorry, that's another slight aside, but I get into arguments with people about it. Yeah, I think personally, I think it's useful to pick up these girls that like that if you see that there's a difference in the way that
00:47:23
Speaker
uh teachers describe them in the way that parents describe them those are very subjective views of how this child this young person is experiencing things and so when you get an objective view an objective measure like this um it's very very useful because Cuba test is really uh sensitive to movement and I have worked with it
00:47:51
Speaker
hours and hours and hours and you know I try to sit as still as I could and just move a little toe or move a little finger or and it picks it up and I think with girls that they really really try to suppress their behavior and their activity or their activities are a lot less like just fidgeting with your fingers or
00:48:10
Speaker
you know um doing other very small movements um it picks up micro events with with a lot of sensitivity so i think it's really useful in in that you know in that situation where you don't really know uh who to believe and you know and i think um yeah cuba chest can be can be used quite quite useful also i feel like
00:48:36
Speaker
A teacher has got about 30 different students to look at and I'm assuming most parents don't have about 30 children. Thank you dad. So I feel like if a girl is masking, you're a lot less likely to notice the little things that might be hints.
00:48:55
Speaker
because there's a whole class of people to keep track of. Maybe there's boys with ADHD who aren't suppressing them at all who are much more noticeable. Those are the ones you're paying attention to rather than the little girl in the corner who's fidgeting with her pen. That's the least of your worries at that point. But if you're a parent and you're at home and it's your child, you're more likely to notice that kind of thing, I think.
00:49:17
Speaker
Yeah and it is I think I really like what you said that it's where there's a disparity and there's uncertainty because one of the things that there's a reason why
00:49:29
Speaker
We have always had, as a rule, do you have to have ADHD symptoms across two settings as a part of the criteria for having the diagnosis? Because particularly in younger children, there are children who behave in a very dysregulated, let's use this, we'll go back to just what dysregulated means. Cause I think it's important and you've mentioned it, behave in a very dysregulated way.
00:49:53
Speaker
often quite angry and appear to be hyperactive and have ADHD speeches at home, but it's not due to ADHD. It's due to some often trauma or relationship difficulties or something more relational and interpersonal than a neurodevelopmental condition. So that, just to explain, if people are kind of listening and going, well, why on earth do they need to have this stupid rule that it has to be across two places? That's what I'm thinking. Yeah.
00:50:21
Speaker
that's the reason also people might want to act like that because of their friend group and people in their friend group act like that like if they're at school sure so triangulating the two out the theory is because it's a neurodevelopmental condition it is present in all settings because you are present in all settings and so you should see some symptoms you won't see exactly the same behaviors you should you should see some
00:50:42
Speaker
but even one-dimensional, you should see some similarity between the behaviours. That's the argument. I think this is really challenging to that argument. It's not just because we've already done it like that. There are reasons why we do it like that conventionally, but we may need to rethink and have the kind of
00:51:07
Speaker
the kind of thinking that you're doing in terms of, well, there are a proportion of people where we have to try some way to get an objective way forward or use something like a masking questionnaire to pick up those where this is happening. Yeah, I think another interesting thing that I was thinking of, and this is for future research, but when I was recruiting for my studies,
00:51:34
Speaker
I came across a so I this was when I was recruiting for the children in primary school to do the questionnaires and loads of parents came back to me they you know they really wanted their child to participate in you know all sorts of things.
00:51:54
Speaker
But there was this group of parents that asked me, well, my child is homeschooled and can they still participate? Obviously they couldn't because I was looking at this difference between home and school. But I spoke to a few of those parents and we had a
00:52:12
Speaker
kind of half an hour to an hour chat about their experiences and you know I asked them why why are you home schooling them is there any reason for that and you know what is the difference between you know their their kind of behaviour at home and at school um or sorry when they were at school and now that they're at home and the
00:52:33
Speaker
actually, the biggest reason why they decided to homeschool their children, their girls in particular, was because they started seeing a massive behavior shift as they got older, you know, they started to become a lot more secluded, they started to have anxiety and, you know, all of these different things.
Homeschooling and Different Masking Traits
00:52:53
Speaker
And so, and they said, when they started to homeschool them, this changed, you know, and they didn't really see much of that.
00:53:00
Speaker
behaviour difference in their personality kind of developed in a different way. And so I would be really, really interested to see whether, you know, girls that are just homeschooled, if they if they're masking traits differ from girls in in school environments, I think that would be really interesting. But, you know, yeah, with the very few few parents I've talked to, it seems like that's, there's something there.
00:53:29
Speaker
I mean, yeah, the homeschooled, my experience of the homeschooling kind of community, the families who I work with who have been homeschooled, I mean, obviously it's very challenging diagnostically, but that's an aside, but very few of them have chosen it as a kind of lifestyle choice. It's because things have gone really very badly wrong.
00:53:51
Speaker
they, you know, they felt it was best for their child. I think that's really, that's misunderstood about people who homeschool, I think. We've mentioned a couple of times emotional dysregulation and I talked about dysregulated behaviour. What, it might be worth just unpacking a little bit on what that is and what you understand by it and how important it is.
Emotional Dysregulation in ADHD
00:54:14
Speaker
Yes, so emotional dysregulation is
00:54:21
Speaker
basically not being able to regulate your emotions. So, you know, having these kind of over or under reactions to things. So I think in so in my qualitative research, the interviews that I mentioned, emotional dysregulation came up
00:54:47
Speaker
in every single participant I talked about and so that was a very very interesting but I guess not surprising given you know how much research there is out there that indicates you know how important emotional discrimination is in people with ADHD but it revolved I guess
00:55:11
Speaker
different types of emotions. So anger was something that was quite prominent. So, you know, this feeling of anger and not really knowing what to do with it. I think in that, that kind of revolved around frustration being really, really frustrated in
00:55:28
Speaker
you know not being understood or not being able to you know voice your thoughts or not being able to put your thoughts into you know into words and things like that loads loads of frustration and anger around your ADHD and how that presents but also just the
00:55:49
Speaker
the high end of that is when you get very you know the smallest the smallest kind of uh positive you know that would happen so when you get happy you get very very very happy and you just can't contain that and you know there's two kind of extremes um i've definitely experienced that my entire life i think i'm a bit better now with medication kind of trying to manage
00:56:14
Speaker
manage that but when i get angry i get very angry when i get happy i get very happy and that's you know very very difficult i think for
00:56:27
Speaker
a teenager when you know, you just a neurotypical teenager has, you know, difficulty with kind of just, you know, hormones and things going around that adds emotional dysregulation to all of that, that's even more difficult to manage. So I think that the issue with that is that, I guess with people with ADHD, they feel like they are a teenager their entire life.
00:56:55
Speaker
You know, they don't really. I think that's the annoying thing, but I guess it does get easier as with more support and maybe, you know, medication and things get older. But yeah, I think emotion is regulation is something that is really, really important. And I really, really think that it should be considered, you know, as something to support
00:57:26
Speaker
people with because I don't think that it's something that is really looked at in terms of like, okay, now you have a diagnosis, we help you with your main ADHD symptoms, you know, attention, hyperactivity medication, but what about everything else? How do we, you know, if, if emotion dysregulation is such an important thing that people struggle with throughout their life, it's something that should be, uh, you know, considered when, when giving support.
00:57:51
Speaker
But also, growing up, how do you manage children that, you know, have these massive tantrums or cry for absolutely no reason or, you know, it's hard. Yeah.
00:58:08
Speaker
considered a lot more. Yeah. No it does and I think obviously the argument is well it's not it's not specific to ADHD so we can't make a diagnostic at a diagnostic criteria but that doesn't mean it's not important we should it doesn't have not an argument for not asking about it addressing it and I've just been thinking of myself I don't even know
00:58:30
Speaker
I've been doing ADHD for a long time and it's a shame to say. I don't even know if there's a validated measure, a proper measure for emotional dysregulation, because we just don't think about it and we should.
00:58:42
Speaker
I feel like in combination with masking as well, I feel like a lot of it is, a lot of the minimal emotion stuff is over masking, where you kind of have these intense emotions and you kind of overdo the masking, but I'm not saying that's what it is all the time. No, I'm sorry, that was my interested face, not my, what are you talking about test face? Because, you know, I, okay, come on. No, that was my, what you're talking about test face. Okay, okay, thank you.
00:59:06
Speaker
Yeah, you know I used to and still do struggle with emotional dysregulation quite a lot of time when I would have these really minimal reactions. It wasn't because this could just be me and not like a more general thing. It wasn't because the reactions themselves were small. It's because I was trying so unbelievably hard to keep these big old emotions inside. Yeah, yeah. I was kind of overdoing it a bit. Yeah, I know.
00:59:31
Speaker
And I don't know if that's a more general thing or just my personal experience, but what do you think about that? I do think that emotional dysregulation is experienced more in women with ADHD, but I also think that it is important in men and I think it's probably less thought about just because, you know, we kind of
00:59:57
Speaker
think of emotion as part of something that is just a woman's thing. But I do think, you know, men with ADHD also struggle with it a lot, especially because they feel like they have to suppress it a lot more. So I think it's something that we should look at. And if I am not mistaken, I feel like I've seen I have read a paper on this, you know, I mean, Barkley is a huge ADHD researcher.
01:00:27
Speaker
I feel like because I've heard the name before and I'm thinking I should definitely know who that is. He talks about emotional dysregulation a lot and he said that it should be part of the core ADHD
01:00:46
Speaker
criteria. I think there's, like you said, you know, it's not just specific to ADHD, so it's hard to kind of, you know, separate that. So I think, well, I wanted to ask you one more question, two more questions, if I may, two more questions. One is, one of the standard questions that we've got is what are the implications of your research for people with ADHD? But I think I want to
01:01:15
Speaker
ask that more specifically, what is the implications of your research for yourself at the age of 15? So if you go back, if you went back to the age of 15, what would you then tell yourself as a result of what you've done in terms of research? So I think, I mean, this is quite emotional, I would say, because I have
01:01:41
Speaker
Because I'm in clinic now a few times a week, I kind of visit those emotions as a 15-year-old on a daily basis because I speak to so many young people, teenagers, and see what they experience. And so I think I'm constantly reminded of this implication every time I go in.
01:02:10
Speaker
They feel, well, I felt completely misunderstood.
01:02:17
Speaker
And also not really, like I couldn't, I didn't know who I was. I didn't know what was wrong with me. I didn't know what to ask for, you know, what help to ask for, what support to ask for. If, you know, there's just so many questions, so many, so much pressure, so much expectation that I think if I knew, well, first of all, if I knew that
01:02:45
Speaker
women with ADHD existed. That would take a massive, you know, a massive load off of me. I think that was that was one of the biggest things initially. I remember when I first got a diagnosis, I went and I searched on Google, you know, ADHD, and I couldn't find anything that was
01:03:07
Speaker
you know, related to women and to girls, it was all surrounding, you know, boys like, oh, boys tend to have ADHD, and, you know, they are very hyperactive, and this, and I'm like, I don't relate it to this. And some things I do, some things I don't. And, you know, I thought,
01:03:25
Speaker
Um, I think as I got older and as I, uh, research more and I looked into ADHD more, I realized that, um, I do have ADHD, but up until then, I think there was so many questions, like there must be something else wrong with me. There must be something else going on because none, you know, my, my symptoms and my experiences are not really matching with what I'm seeing on Google and what I'm seeing on these websites. And so first of all, I think, you know,
01:03:54
Speaker
we need to make girls and women feel understood, make them feel like their symptoms are being reflected in ADHD tools and screening tools and that they're being taken seriously, you know, whether that be emotion dysregulation, whether that be rejection sensitivity, all of these things that really, really matter to girls with ADHD and
01:04:20
Speaker
and make them understand that yes, this is something that you might experience as a girl with ADHD, and this is something that you can get support with and feel understood by clinicians, by parents, by teachers. So yeah, I think that the understanding is the biggest thing because you then know how to move forward. You know, you know what to ask for help. And also,
01:04:50
Speaker
Again, understanding of medication and support. So I think I was very, very afraid of medication. I think there was quite a big stigma surrounding it. I didn't really know what the types of medications there were. And when I was doing my research, I was like, you know, you could have
01:05:13
Speaker
like all of these side effects that are coming up and it's obviously they come up as like you know very rare things that could happen but I think when you do your own research and you know you search for my foot is hurting you automatically have cancer so it's it's just that kind of thing of like you know very very uh you you put
01:05:33
Speaker
there's so much information out there and you don't really give that you know in a very neat and concise thing to a 15 year old that is very very overwhelming so yeah I think that would be you know just being more yeah. So what do you think what do you think is next for you? What's your next research question going to be?
Future Research Plans and Community Engagement
01:05:57
Speaker
So I
01:05:59
Speaker
technically have finished my data collection. So for my PhD, so now I've, I'm pretty much writing up everything and analyzing everything trying to publish everything. So the study that I've just finished, it basically is the the final piece to this masking hypothesis. So like I said before, we
01:06:29
Speaker
we think that in primary school, when demand's low, masking is easier or they don't tend to mask as much. When demands get higher in high school, in secondary school, that mask comes down, they start to struggle and all of these things. We are trying to basically mimic that in a controlled environment by using cubitest. So there is
01:06:56
Speaker
Cuba test for children, then there is Cuba test for adults. The Cuba test for children is 15 minutes long. It's a lot easier. The Cuba test for adults is 20 minutes long and it's harder. I guess it's harder for children because it's not an age appropriate task. So we're basically trying to mimic this low demand, high demand in a controlled study.
01:07:23
Speaker
So we're basically trying to experimentally test our masking hypothesis. And our prediction is that young girls will be able to mask their ADHD difficulties under the low demand condition, so that when they do their child test, but they won't be able to mask their difficulties in the high demand condition, so when they do the adult test. Whereas, and that compares with boys that have similar problems, they will be challenged under both conditions.
01:07:52
Speaker
That's smart. That's really smart. I'm really interested to see what you find. So thank you so much. We've really kind of put you through the kind of the mill here and shared all of your kind of wisdom and experience. And thank you so much. If people want to find out more, follow your work, where can they do that? If they've just listened and kind of, oh, this is interesting. How do they find out more or, you know, when, when your papers come out?
01:08:18
Speaker
Yes, so I have a Twitter that I do not use, but I should. So I think for now, I don't really know where to point me towards because my Twitter is non-existent, it's very inactive. But when I do publish, I will, I mean,
01:08:38
Speaker
I have so much to publish. I really, really want to do it all. I think if I could publish everything by the end of my PhD, it would probably be around 10 papers, all of the data that I have. There's a lot of data. You can run it with Twitter. Yeah. So I'll definitely, definitely start being more active on there once I start publishing, once I do it. I'm going to do a few conferences and things like that.
01:09:06
Speaker
Because it's inactive, I don't even know the name of it. So I wouldn't be able to show you right now. That's really inactive. Well, I tell you what, we'll make sure, this is, I'm committing ADHD UK to something, but we'll make sure when your papers come out, let us know and we'll put out on the ADHD UK. Because I think the work we're doing is really, really important. As a clinician, I really want to start using those tools that you're talking about. I want to know what your data shows. Sorry. The dog wants to do something.
01:09:36
Speaker
But yeah, no, I'm really, really excited to have heard about it. And I'm just really, really grateful to you for your time this evening. Really, really interesting. Thank you so much. Thanks so much. Thank you. All right. I hope I made some sort of sense. It's just us that lost it on occasion. Yeah.