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Episode 24: The quest for diagnosis with Tom Nicholson
507 Plays1 month ago
What is it like to battle the adversities of the diagnostic system? How does getting, or not getting, a diagnosis change the way parents see their children and themselves?
Tom Nicholson is an amazing force of nature in the ADHD world, and has done a whole PhD on this!
He has summarised it in this paper: https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13817 and joins Max to discuss it. There is also a Tess cameo!
More Tom next week!
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Transcript
Introduction and Episode Overview
00:00:07
Speaker
Hello. Hello. Welcome to the ADHD Science Podcast. Or welcome back if you're coming back. Yes, exactly right. If you're binging, imagine someone binging our voices. So funny. So apologies. Anyone who hangs out with me is binging my voice. Poor people. I just want to binge your voice.
Meet Tom Nicholson: Lecturer with ADHD and Autism
00:00:25
Speaker
you such a creepy thing day continue ah So we are going to do an episode today which is one of our more conventional episodes. one of us is going to an episode So you weren't there for this recording. it was working yes Always working or doing important Pride staff.
00:00:43
Speaker
stuff yeah um and And it's with Tom Nicholson. Tom is ah kind of an amazing guy, really. He's a nurse by background. He's a looking lecturer in mental health. He's a clinician. He runs training. He has ADHD and autism himself. He's just an absolute force
Research Insights: ADHD Diagnosis and Self-Perception
00:01:04
Speaker
of nature. He's a phenomenon. um So we've done two episodes with him. The second one, which Tess was there, which will be out next week.
00:01:13
Speaker
on the positives of ADHD so look out for that one yeah but this one is more about the diagnostic journey so you weren't there but basically Tess what he was saying is that the he did some work looking at people's experience of the dyocs diagnostic journey so he had quite in-depth Longitudinal as in over time ah Studies into a few different people's experience. So it was very in-depth interview techniques And he sort of drew out three things really one was the the struggle the struggle to get a diagnosis which of course is you only have to glance at the internet to see that it's struggle and or talk to anyone, but then there's also the biographical understanding, so how people how people understood their children differently and how they made sense of their lives and their behaviours.
00:02:08
Speaker
but also how people themselves made sense of their own experience after diagnosis and how a lot of, a lot of the time, obviously, as, as with us, um, parent and child have both got a diagnosis. So there's a kind of whole sense making. So I suppose I was going to ask you, did did, did getting your diagnosis yourself change you, how you saw yourself?
From Daunting to Manageable: Living with ADHD
00:02:31
Speaker
Ooh, definitely. I think for one, it made me blame myself less for my symptoms. Like, of course you still need to take accountability for your actions, right? If my impulsivity means that I say something brutally honest about someone's outfit, you know, that's still my fault for doing that, but it means that I beat myself. I think this is a perfectly nice jumper. This is a very classic max day of the year. It's a very classic outfit. I don't think there's been a day where I haven't seen you wear that. This jumper, I tend to wear the same jumper for a few days and then I change.
00:02:56
Speaker
But yeah, but it it did also kind of, it took me a while to come to terms with it, but the fact that the symptoms that I thought was just teenage awkwardness was actually going to be with me for my whole life. And that it wasn't ever going to go away. And that that did kind of feel like a sense of dread for me because for some reason I'd always told myself that this stuff would go away. And of course, you know, you can manage your symptoms and they, and you know, I,
00:03:18
Speaker
come to terms with that since, you know, there are things that you can do. You you you don't just give up. no There are certain aspects of it that I ah did have to come to terms with the fact that they were going to be with me for my whole life. Yeah, and I think that's a really good way of putting it, isn't it? that I'm very different getting a diagnosis as an adult because the kind of idea that anything would would change has already gone yeah years before. You've already gone through that. Yeah, yeah, yeah. But that particular thing of in in your teenage years to realise, aha, this is not a phase
Parental Acceptance: A Lifelong Journey
00:03:49
Speaker
in a sense. Yes. Yeah, it can be quite difficult. And I think it can be quite difficult for for for parents to go, oh, this isn't just
00:03:59
Speaker
they're a child or they're a teenager. This is this is ah an actual difference. ah you know you Anyway, Tom talks about that quite extensively. So um I think we should just get on with the episode. We should jump right in. Excellent. Okay. So we welcome Dr. Tom Nicholson. um Tom.
00:04:19
Speaker
introduce yourself to to the ADHD science audience. Hello everyone and thanks very much Max for having me today. My name is Dr Tom Nicholson. I hold or wear a variety of hats in the ADHD world.
00:04:33
Speaker
so I currently am an assistant professor of mental health nursing at Northumbria University, where I teach nurses how to be nurses, where all of my research and my research interests are on ADHD. In particular, my PhD was on the experiences of parents on that diagnostic journey and how parents create stories for themselves and understand their children and themselves through that diagnostic journey.
00:04:57
Speaker
Outside of my work at university, I also have an ADHD training business where I go into health, education, and social care environments to train the staff on understanding neurodiversity, their neurodiversity agenda, how to support their neurodivergent staff, their stakeholders, whether they be patients, service users, students, just to try and make life in the society a little bit more neuroinclusive.
00:05:23
Speaker
Previously, I was a mental health nurse working in CAMs in an ADHD assessment service. and Prior to that, I was diagnosed ADHD at five years old. so I am ADHD and autistic. I've lived my life with a diagnosis. I've been medicated as a child, medicated as an adult, and had a period of about 15 years of being unmedicated.
00:05:43
Speaker
so that triumvirate of academic experience, clinical experience, and personal experience, which hopefully gives an interesting perspective.
Exploring Parental Narratives in ADHD Diagnosis
00:05:54
Speaker
Triple threat. Yes. That's what we are. So you're a busy man, it's fair to say, so umm but an extra thanks for joining us today. um And that's what we want to talk about, and and what will exclusively revealed, this is part one of the Tom Nicholson, because you've agreed to come back and talk when Tess is here.
00:06:13
Speaker
um about another bit of work you're doing. So we're going to talk about the paper that you published, which fortunately is open access. So we'll be able to put a link so everyone can read it. um You can publish in the sociology of health and illness. um This last year, gosh, it's 2025. I know it was last year. um And it's on parental illness work. So as is traditional on the ADHD Science podcast, we'll start with the question, what was your question?
00:06:40
Speaker
So this particular paper is the sort of, not the magnum opus, but the the main findings of my PhD project. So my PhD, I did part-time over about four and a half years. And I was really interested in the experiences of parents, not just when their children get a diagnosis, but they lead up in the journey and the process of receiving and seeking diagnosis. So I was interested in,
00:07:07
Speaker
What's it like? just in in In a nutshell, what is it like for parents to sit on waiting lists, to wait through assessments, to receive that diagnosis, and then what happens after that time as well? so i am followed parents. It was a longitudinal study, which means that I followed parents for over two years, interviewing them multiple times and interviewing them pre-diagnosis. So what was the parental story, the narrative of their children and themselves before they even received that diagnosis? How did that change on the second interview in the week of receiving the diagnosis? And then how did that change again, six months post-diagnosis when hopefully parents had learned to
00:07:52
Speaker
ah live with the new understanding of their children, when their children had maybe developed more coping strategies or engaged with sort of support that was available, although not many of them had that opportunity for reasons that are probably unsurprising to a lot of the listeners. yeah and And yeah, so I was really curious in how we create stories of ourselves, stories of our children and stories about what's happening to us through these journeys.
00:08:20
Speaker
and And it was an absolute privilege to be able to do a piece of research like that because yeah that's quite rare to have that opportunity. Yeah, and it's an ah it's an incredibly rich, as you say, biographical bit of work and you really get the the the stories really jump out at you even you know, even on a even on a kind of fairly brief reading that the the the kind of passion of the parents really comes through. So what what what who did you find? I suppose our conventional question is what did you find?
Research Dynamics: Participation and Bias
00:08:53
Speaker
But actually the first question I think for you is who did you find? Well, this was a really fascinating finding from my study. So what historically in ADHD research, especially in parenting research, what you find is you get the vast majority of participants are mothers.
00:09:07
Speaker
and You get very, very limited further involvement in research on ADHD, unless you are Elena Singh and you specifically do a project on fatherhood and ADHD. There's only one that I'm aware of that is really, truly looked at that in a lot of detail. And I found the same thing. So the people I got were predominantly mothers. and There was another really interesting angle to that as well. where in my So my recruitment and sampling strategy, what I was looking for was anyone. It was open to both parents. Both parents would come into a room if they wanted, foster parents, adoptive parents, and
00:09:49
Speaker
caregivers in terms of grandparents as well. And what I actually found was it was mothers who came forward anyway, was also predominantly people who had some level of experience working within or adjacent to healthcare. So there's this idea in research of participants being quite self selecting, where you end up getting participants who understand more the importance of research, so are more likely to join in the research projects. And the same findings for myself was where most of my parents were either you know social workers involved in nursing in some way, maybe educationalists or teachers, which was both
00:10:34
Speaker
interesting from a findings perspective because no doubt we're going to get a very particular type of story, those stories of people who might know a bit little bit more or be a bit more sort of typically educated, but also it told us about but who we're not getting, who we're not reaching as well. And I'd love to do a future project looking at specific groups which who we aren't finding.
Narrative Analysis: Unfolding Parental Stories
00:11:02
Speaker
So that's who I found. um and How many people did you did you interview? how What was your kind of numbers? because i can see so So go on, I just got the paper open and and
00:11:17
Speaker
i can I can see some people have been highlighted, but is that is that the sum total of? So the sum total is the quality of piece of research. So there were seven participants, but those participants were, it was 21 total interviews and those interviews were about between one hour and 90 minutes long. So yeah unlike quantitative research where you're looking for huge sample sizes of... you could get a massive and lie of Yeah, it was not about being generalizable. What it was about was what's called sort of deep learning by really engaging in large data sets of words and
00:11:50
Speaker
pulling it apart on a really quite analytical level. So what was really frustra frustratingly enjoyable was that when I speak to other qualitative researchers, when I ask how many words per hour their participants were speaking, it's a small amount, it's not too big of a amount. My participants spoke at like 1.5 to two times the amount of words of a typical,
00:12:18
Speaker
Paren interview qualitative interview and i think part of that is because most of my parents were were new or divergent themselves exactly but passionate when so that that eighty two where although the one hour ninety minute interviews the amount of data was absolutely spectacular.
00:12:36
Speaker
Sometimes I would ask one question and a parent would talk for 25, 40 minutes on one question, which is just not that typical in qualitative research. and quite but And is exhausting as a researcher because presumably, well, we'll talk about what you did with the text and how you processed it. and I'm always interested in that.
00:12:58
Speaker
um It's interesting to know isn't it so with two people speaking as two people with ADHD I wonder how many people play this podcast at 1.2 and not probably not that many because we're already we're already we are running at 1.2 already probably or I Find it very very difficult. I discovered the other day. Sorry. This is a bit. This is one of our first This is the first of many tangents. I'm afraid listening so strap in um I decided the other day that I actually do like classical music but only when played at 1.2 I think it's quite good, but it has to be 1.2. The audiobook I'm currently listening to on Audible is 1.25 speed, for the same reason. There you go. It's not a diagnostic finding, but I think it is an interesting one. um Anyway, so so you got this voluminous amount of interview material. I do want to get onto what you found, but I'm fascinated, having done a little bit of similar stuff, how do you begin to make sense of... I mean, it must have been tens of thousands of words.
00:13:57
Speaker
Yo, per interview. Yeah, it there was a huge amount of data. And the um an analysis process that I used was a thing called narrative analysis, and which is slightly different to thematic analysis. And what you're looking at is how the stories are formed and formulated across the not just one of the interviews, but across all three interviews. So if we imagine all three interviews is a narrative, a story, but also each individual interview is also a story, is also a narrative. And then within those interviews, there will also be stories again of and anecdotes and particular instances. So with the narrative analysis, what you would typically do
00:14:43
Speaker
And it's one of two things, you could either be like quite linguistic and narrative analysis, where you're pulling apart every word that's used and understanding and defi definitions of each word. Not what I did. I did it they could not have done that. No, I did it sociolinguistic narrative analysis, which is a really fancy word. But what it really means is with sociolinguistic narrative analysis is you're interested in the purpose of the story. So why are parents telling me this particular story at this particular time? oh wow yeah Because when you interview someone for the first time, and you in the first question, you're asking, you know, what made you think you why are you on the diagnostic journey or how did you get here?
00:15:25
Speaker
they will not all parents will do will tell that story chronologically they might say something they might say oh when my son was one when my son was two or they might say three weeks ago this solidified my choice so even the first thing that they tell me is interesting how do they sort of create a story arc or a story narrative with a thing that I developed called plots. So in typical
00:15:57
Speaker
ADHD fashion, I couldn't quite find an analysis that worked really well for me. So I made my own. made you And in something like say thematic analysis, what you have is you look for themes, you look for common interests, you look for common ah terms or words or identifiers that are coming up regularly.
00:16:18
Speaker
I developed this concept called a plot. And a plot is similar to a theme, but it needs to have a an antagonist or a protagonist. So these are like micro stories of In this four-minute section, the parent is telling me a story where they are a protagonist against an antagonist, and that antagonist might be inattention, hyperactivity, impulsivity, or it might be a teacher, or it might be their parent, or and they might be talking about their child, and they are the antagonist. So right um in each individual interview, I pulled out
00:17:00
Speaker
all of these micro, as many of these micro stories as that I as like possibly find. pulled them onto, I didn't use any sort of tools in terms of end node or and what's it called, the qualitative data analysis tool that app that everybody uses. I didn't use any of those. I did film you know i did qualitative and and analysis before pretty much before you had computers, not quite, but it was 20 years ago. so Well, I used Word, pen and paper, highlighters, because that just worked better for me.
00:17:32
Speaker
And I put them all essentially on a wall and then started connecting them together. This parents told me a story of really similar content five times in this interview. And they told the same story.
00:17:46
Speaker
four times or at least tangential stories in interview three, but they didn't tell me that story in interview two. Wow. Interesting. Yeah, yeah, yeah. And so with that, you start being able to see these sort of undulating ebbs and flows of how and the overall narrative of their journey is being created. and So this isn't in the paper itself. This was the real deep analysis before the core big findings about how parents would do i develop these sort of core plot points. And these plot points were things like there was a problem. That was all parents in every single interview talked about their ah problem. So that plot or similar to a theme would be there is a problem. There is a problem as a plot featured in every single parental interview in interview one. But if if it doesn't every single interview one really heavily,
00:18:43
Speaker
there was a problem as a plot changed in in interview three, because they reflected back on that problem from it if interview one with new eyes, with a new lens. And then other plots, I'm i'm not going to go into a lot of detail on each one, but you've had the diagnosis, the system, the fight. and the journey The journey is emotionally challenging, which I then reframed to the fight even more deeply. and The mother was a big plot. So motherhood and identity, ah narratives around medication, and the balancing act between between disability and difficulty. Yeah. So micro stories, micro plots into core plots, which is against no longer a lot of core themes. And then
00:19:32
Speaker
took those core plots and looked at how they mapped temporally, like sort of in terms of time across different parental narratives. So some parents used these plots at these times in their large overarching story in this way. Other parents didn't do that.
00:19:50
Speaker
other parents had very different overarching stories. So then I would explore, why? And then try and work out, why did this parent have have a different overarching plot, overarching story to parent A or parent B or cat or Debbie? And then what was shared between those participants. And that's what social, social, cultural narrative analysis does. It's not just looking at what you're finding, it's trying to attach it to what else is happening in society. So I realize that's like ah what a four minute description of 15,000 words of my thesis. yeah So if if it if it is looking a little bit tricky, it's it's best to think of it is we have stories of our lives.
00:20:43
Speaker
Those stories of our lives are made up of certain shorter stories of different times of our lives. Why and how do we use those smaller stories to create our bigger story? Yeah. And that was like sense making in a sense. A hundred percent. And then the big thing for me was about trying to find how do parents make sense of these things and parents make sense of these things through the core three findings.
Core Findings: The Diagnostic Quest
00:21:11
Speaker
of the research paper that we're discussing today. Yes, let's talk about those. What were your core three findings? Thank you for that brilliant segue. um Again, not many people are going to have a conversation about that, the nitty-gritties of data analysis. and So the core three findings were the sort of building blocks of parental journeys. So the core work that parents need to do. and it So the term work here is a sociological term and it's essentially effort. So what in what ways do parents describe the different levels of effort they have to put in through the diagnostic journey to be able to make sense of it?
00:22:02
Speaker
Okay. Yeah. So those three core findings are the diagnostic quest, self biographical illness work and child biographical illness work or recontextualizing the child. I'll explain them in a bit more detail. So like minute so let's start with the diagnostic quest. How did they describe that? It's it's interesting that you use the word quest, I think.
00:22:26
Speaker
Yeah, and that was a very purposeful choice and with a lot of thought. I think what one of the things that was really tricky ah to try and like pull all of my PhD and all these hundreds of thousands of words together was to work out what do they all have in common? And the term work and illness work came out of that. And then I'd say, OK, well, what is illness work?
00:22:55
Speaker
What makes illness work different from stereotypical standard parent work? Because as parents, we all have to do work that parents do not have to do. Non-parents don't have to do. We have to look look after our children. We have to care for them and love them. We have lots of the practical tasks. So what is different about illness work? and Well, illness work is work related to a perceived societal illness or medical problem.
00:23:21
Speaker
There's some interesting discussion about what makes something a medical problem and and or a non-medical problem, but that's another debate. And so for society to legitimize the struggles and journeys of parents,
00:23:41
Speaker
parents feel like they need to find answers within medicine because medicine and the medical institution and the medical power structures give legitimacy and truth that this problem is not typical, is not is' not a the average, it is different, additional, and it is medical in nature.
00:24:10
Speaker
Yeah. So, you know, it' just just slightly validating. It's validating. Absolutely. So for parents who are we're exploring they often talked about early on in their children's lives, they knew there was a problem and they used the word problem. i they that My child isn't doing what the book said they're supposed to be doing. I've got three kids, I parent them all the same, but the middle one, there's something different. They're so monumentally different is often what they would say. like So you see parents comparing their children to other children, and we see them
00:24:47
Speaker
working out that there's something wrong, so not not wrong, but often it comes from something wrong, i.e. my child is failing at school or struggling at school or struggling to make friends. And so when, as a parent, something is wrong or there is a problem, you seek
Challenges of Validation: A Hero's Journey?
00:25:01
Speaker
an answer. Well, what is this answer? what What actually is this problem? And that's where the parental illness work begins. The illness work is not every parent in the world has to spend sometimes years trying to work out why their child has differences or difficulties that other parents don't have have to do or other children don't have. So the GP appointments, the and reading up online, the but thinking it might be this one issue and then exploring that fully and actually it's not that, actually it's not that my child is hard of hearing or or has a ah hearing issue.
00:25:39
Speaker
No, it's it's something else, so we tried that and then we tried all the behavioral strategies and they didn't work and we tried the educational strategies and they didn't work and we eventually came to the the belief that it might be ADHD. That in itself is effort, is months of work for a lot of them, sometimes years of work, of like pulling their hair out trying to work out what's going on here.
00:26:04
Speaker
then they recognize that their child has ADHD. So the diagnostic again quest continues because that's not enough. You now have to prove your belief to those in power. You need to prove that actually your child needs this support. You need to prove that to the teachers. You need to prove that to the GP. You need to prove that to your assessor. You need to prove that to every multiple professionals.
00:26:29
Speaker
sometimes over years. you know it One of my parents and had an assessment when their child when their daughter was seven or it's say seven or eight and it was inconclusive for ADHD. They then received got a a second assessment at 14, 15 and was diagnosed with ADHD. The turmoil and the emotional turmoil of having to not get the answer at seven and then get the answer in her words at 14, 15, was in itself really challenging was really challenging and distressing and took a lot out of that mum because she'd been working so hard for our kid the first time and she described it as but it's failing. She failed us, our daughter, by not failing hard enough when she was seven, but she knew there was something in her words wrong.
00:27:24
Speaker
So this battle, this this fight with the systems, this toing and froing of of proving and legitimizing and justifying your beliefs as a parent that your child needs additional support is exhausting, is frustrating, a emotionally and physically draining. I think one of the things that people don't often think about is just the physical effort of having to go to appointments, to cancel work, to get a 2pm appointment. Well, I'm going to have to go take some time off work. I'm going to lose my annual leave to go to a medical appointment for an assessment, which might only be 10 minutes long. And in these assessments,
00:28:08
Speaker
how most typically mothers are worth describing being called histrionic, overly emotional. Do you not think it's just your parenting style? Those sorts of quite belittling comments from professionals. They they then have a need to fight against those as well to prove your prop up and prove your own importance and effectiveness as a parent, to be able to get people to believe in your child's need for support, all of that is just work that the average parent doesn't have to do because they don't have to prove their children's needs for years.
00:28:54
Speaker
and then this this diagnostic quest continues further, even when you get a diagnosis. Because you receive the diagnosis, parents get the diagnosis for their children, and it's like, brilliant. Now, I need to go and work out what what ADHD even is. Because cams haven't told me, the private assessor hasn't told me, the report doesn't really tell me exactly what to do now, I just have this diagnosis. yeah Most of them have been offered no post-diagnostic support whatsoever, as as is typical in the UK at the moment.
00:29:25
Speaker
So, okay, I need to go and read books. I need to go and watch webinars. I need to listen to podcasts like this. listening If you're a parent out there listening to a podcast like this to be able to understand your child's medical problem, quote unquote, that's work that the average parent doesn't have to do. Yes, it is.
00:29:43
Speaker
ah ah It pains me to think of listening to our podcast as work for people. We hope we make it somewhat entertaining. But yeah, no, I do. i Absolutely. it is It is something on the to-do list that other people just simply don't have. And it's something that is hidden, that is swept aside, that is often ignored in society as one of the, and again, I'm going to use a word here, burdens of parenthood, because it a it is a It might be enjoyable. and It might be you might really enjoy that process. But it is a sort of sociological burden on your cognitive ability. It's a sociological burden on your time and energy. Now, as you say, the words work here and the words burden here, I mean, from a sociological perspective, ah not not that like being a parent is just constantly a burden. But the it is what it is effort, it is
00:30:36
Speaker
time spent researching ADHD is time not spent doing other things. Yeah, yeah exactly. well And disabled children have to do that. Absolutely. and And, you know, I'm not saying that the parents should be spending all of their time, you know, you know kind of playing you know, doing puzzles with their child. But yeah, all of this stuff takes stuff takes energy and time out ah of spending time and and building relationships, which is one of the other things that, you know, you you get so exhausted by this quest that it does have it does take a toll.
Identity and Diagnosis: Parental Transformation
00:31:11
Speaker
I suppose what just just the two observations, one is, it reminds me a bit of the hero's journey, in a way, the kind of Joseph Campbell hero's journey. And just to explain, that's a sort of
00:31:25
Speaker
It's kind of an archetype of story, isn't it? Where the hero sets off on a quest is is presented with an initial difficulty, has a number of setbacks and then interestingly often then has a kind of mentor who guides them to a solution. um Maybe maybe the yeah the the professional who eventually gives the diagnosis or takes them under their wing in some ways is that kind of mentor. I don't know.
00:31:46
Speaker
That's exactly what I was thinking. was it is It's a story, it's a narrative. We have a protagonist, the protagonist in this particular instance is a parent, who is going on either a hero's quest or a quest which they fail. And that's and that's why the word quest was used because it's not just one problem It's multiple problems and barriers and difficulties and antagonists they need to fight across years to even legitimize receive,
00:32:23
Speaker
understand and legitimize the diagnosis of their children. So you're absolutely right, it is a hero's quest. if you are allowed to be a hero. And that's where one of the other, the next findings come in and about not everyone feels a hero during this quest. Well, I think so maybe, maybe you could talk about that. I mean, I have something in in in my back pocket, but maybe you're just about to get onto it. What happens when somebody doesn't feel a hero, and how does one, if you're somebody on the other side, because I sit on the other side of this for a lot of the time, I'm the clinician who is either diagnosing or not diagnosing the child, how do you negotiate a position where you are helping people without becoming an antagonist, or without, if you disagree with them, if you don't want to give a diagnosis?
00:33:12
Speaker
That's ah as a really good question. And I suppose we might end up coming back back to that question as I explain the next two and findings because that question threads through everything a little bit. Because one of one of the big things I found in all of this work was parents are very well aware of the systemic problems.
00:33:34
Speaker
They're very well aware of the fact that waiting lists are long, they might not receive a diagnosis, they might not receive treatment, they might not receive post-diagnostic support. They were largely frustrated at that. The biggest emotional toll and the biggest emotional damage and the trauma of this journey didn't come from those things. What it came from was professionals not believing, but not believing in a way that was, again, belittling.
00:34:04
Speaker
Minimizing, maximizing parental shame and saying like outright, maybe this is your fault. they they These are quotes. Are you not just a histrionic mother? Do you not think the reason why your child is acting like this is because you are mollycoddling? These are the words that clinicians were using to parents In 2023, 2024... This is why I cannot get my head round the fact that people are still saying that sort of stuff. I do not understand it. and But it's it's depressingly common. And every single parent talked about, gave multiple examples of these types of comments, these attacks, not just on their capacity and ability as a parent,
00:34:54
Speaker
but on their identity as a parent, on they ah their motherhood, on their fatherhood. It wasn't so much on the father, the father participant, but on motherhood. And one of the things we'll get to, which is which was fascinating, and was mothers who were told, maybe it's your fault in an interview by interview one,
00:35:17
Speaker
who received the diagnosis were telling a very different story by interview three about actually when they said that was my fault, they were wrong. We had been doing a bloody good job, a really good job.
00:35:33
Speaker
parenting a child without the skills, without the knowledge, but doing our best. And the fact that my child is only struggling ah struggling a little bit is a testament to my strength as a parent. exactly And they tried to use that against me two years ago. So for some parents, those negative comments sort of galvanized them.
00:35:54
Speaker
later down the line to do things better with one of my participants wanting to open an ADHD parent support network. Because, you know what, i by coming to my interviews and and exploring this, you realize how lonely the journey is. yeah And maybe it's going to be really lonely. So if nobody else is going to do it, I'm going to do it, is what she said. So they the second core big finding was a thing called self-biographical illness work. So like I'll explain briefly what biographical illness work is.
00:36:27
Speaker
If we imagine we all have a story of ourselves, we have a belief in ourselves, you know, for most, the majority of people who are sort of fit and healthy, with no no obvious reason not to, but have a story where they are going to grow older, they're going to have bodies that work, they are going to work in a career or employment, and they are going to ah have relationships, they might own a job, get a gym, own a house, they're going to hopefully work on their sort of well being long term.
00:36:56
Speaker
So we all have this story of our life and our life trajectory and who we are. In standard so illness sociology, what the understanding is is that illness disrupts that story.
00:37:13
Speaker
For instance, in the most tangible way, someone is looking forward to growing old, they receive a diagnosis, of a terminal cancer diagnosis. That story of growing old is demolished, it's it's it's disrupted, it's destroyed. And that is a lot of work that you need to do to reconstruct But what's my story now? If someone receives a sort of ah an injury that becomes disabling and they're going to be utilizing AIDS like a wheelchair for the rest of their life, their story changes again. a Or maybe I can't do that job that I thought I was going to do. and Maybe I'm going to have to do something different. and So they reconstruct and change their story.
00:37:54
Speaker
This is also true of parents. So for a parent, you have a story of yourself about what type of parent and what your life's going to be. Most parents believe that by the time their children are 18, 19, 20, they're probably going to move out. yeah They're probably going to go and live their own lives and and and get have their own children and their own partners, and they're going to flourish. And then you will be Some parents describe, you know, and then I'll be able to have my life again. I'll have it all back. I'll have it all back, but now my body doesn't work. and But basically we have this this belief about what our parent journey is going to be. Child illness also disrupts our own story. Yeah. Oh, hang on. i've my my My child is and is disabled or has a disabling condition or a chronic condition. I might need to be a hands-on parent for 10 years longer.
00:38:50
Speaker
30 years longer than the average parent. I need to change my self-perception. I'm going to have to put more effort in as a parent than other parents. I'm going to have to potentially stop working to support my child. So that story I have of myself that I'm going to rise in my career is disrupted because i'm not now I'm now a carer for my child. So that's parental biographical disruption generally.
00:39:20
Speaker
ah In my findings, there were different ways in which parental stories or parental parental sense of self and biographical self could change. For some parents, it was disruptive. Oh, i I've now got ah i've got a daughter with ADHD or a son with ADHD.
00:39:41
Speaker
Oh, what's my life gonna look like? Oh my God, am I gonna have to, are they gonna be able to move out? Are they gonna have a relationship in their future? Am am I gonna be more
The Impact of Non-Diagnosis
00:39:48
Speaker
involved? That was disruptive, it was stressful, and it was challenging. and Perhaps unusually though, for some parents, their journey, their biographical self was cohesive. So what cohesive means is these are the parents who knew their children had ADHD from when they were five years old.
00:40:11
Speaker
And they received that diagnosis and then it went, well, of course I've got ADHD. I knew, I already knew it. Nothing has changed. i I am a good man or a good father because I thought they had ADHD. I fought for it and they do. I did the right thing. That's it nothing has changed in my expectation of myself. I was Right. you know and And that is a cohesive experience of my sense of self is solidified, is strengthened. I am who I thought I am. My life is going to be what I thought it was going to be. Excellent. In standard sociology, what's often argued is the illness itself is disruptive. You get a diagnosis and that's disruptive to your biography.
00:40:54
Speaker
What I found is that you know it's sometimes it's disruptive, sometimes it's co cohesive, but what I also found is not receiving a diagnosis can also be disruptive. I but i thought my kid had ADHD, I've thought it for 10 years, and then the assessor said it wasn't ADHD, they're autistic, they're dyslexic, they have a learning disability, and that has rocked my entire sense of self, because I've been fighting that fight for ADHD for five years, and it wasn't. I was wrong.
00:41:23
Speaker
And that's really it's a really hard pill to swallow. That's a really hard attack, but it's a personal, it's your own attack on yourself, on who you are. I thought I knew what I was talking about and I and i was wrong.
00:41:38
Speaker
And that's a again that's something that people typically don't talk about about when you don't receive a diagnosis. It's not just, oh, well, what is it? How do I get help? it's I've been fighting this. I've been on this journey for three, four, five years, sometimes longer. And I've wasted all that time because it was the wrong answer. It was the wrong journey for me. And professionals often don't consider that.
00:42:05
Speaker
What they're considering is, is it ADHD? Is it not ADHD? They're not considering the impact of a non-diagnosis or a diagnosis on the parent's sense of self. Because we always think of, I mean, we kind of conditioned with certainly with the medicine to think of delivering a diagnosis as adjacent to delivering, you know, breaking bad news to kind of, you know, oh, I'm afraid your child is this.
00:42:32
Speaker
You're right. Actually, over the course, I mean, I've been consulting 15 years and and it very much has happened. I want to, I know this is, we're going to talk about ADHD, but it's it's it's it's happened with ADHD to an extent. It's happened really marked notably in autism. Autism when I started was very much a breaking bad news scenario, although I never really bought it at the time, to be honest. But now that loads of people are saying, well, yes, that's is great that you've identified this, how we can get some help. um And I think with ADHD, it is more nuanced. But but nonetheless, there's there's definitely a proportion of people
00:43:07
Speaker
who for whom it's a huge validation and and and the it's the non-diagnosis that I have a bit of a heart sink when I have to go in and go, well, we don't have we haven't got the evidence. yeah you know how i tend I tend to put it, it's interesting, i again, tangent, but not on your paper, but it's interesting how a non-diagnosis is expressed to the parent seems to me to be quite important in how it is received and what impact it has. Yes. There was, an m again, I'll go on a little tangent when from when I was a nurse. I remember working with one family where I had been brought in as a second opinion to support the family because a diagnosis had not been made. Words like attachment and attachment difficulty were thrown around.
00:43:58
Speaker
and the parents were disagreed and they wanted to fight, well, ah Mum wanted to fight back and say, I want a second opinion. So I came in, but one of the things I did do in that time is I sat down with Mum and I said, has anyone explained to you what attachment is? And she said, no, it means I'm a bad man, right? you but That's what you're saying is I'm a bad mother.
00:44:19
Speaker
And I was like, oh, no, that's okay. And then I explained attachment theory to her. I explained how the interactions, because um the this particular child, there their father had a lot of difficulties with the domestic violence in the in the family. Dad was in prison at the time and was quite inconsistent, caregiving was happening for reasons that were quite understandable for him as well. and And I explained how it's not of this, when we use terms like attachment, it doesn't mean fault. It because just helps to explain.
00:44:49
Speaker
and what's happening neurocognitively with attachment and things like that, and why that might explain some of that child's behavior. And her response was, I totally agree with you. I explained what ADHD was, I explained what attachment was, and even more myself thought, oh, that sounds more like attachment to me. That's actually, done that's very interesting that answers my problems better and my questions better than ADHD ever would have.
00:45:15
Speaker
But nobody had told me what they were. And that's the thing that I think as clinicians, we forget so often. Parents are not versed in our language. They are not versed in what ADHD even is. I think it's ADHD. I think it's bipolar. Parents don't know how rare childhood bipolar is. They don't know how rare childhood childhood childhood schizophrenia is in psychosis. They don't know the difference between ADHD and autism.
00:45:40
Speaker
They don't know. no um And nor should they. i mean Nor should they, of course. Their job to know. so i mean I think a lot of professionals don't know what attachment is either.
00:45:52
Speaker
thats jamin mc high um and and a lot of prefer and a lot Yes, that's a really good point actually, it's really interesting. um ah that just It just makes me think of the how often people are diagnosed in inverted commas with attachment difficulties but the parents are not actually told.
00:46:10
Speaker
Oh, um youve piles, misery upon misery. Honestly, it frustrates so me so much because we we shoot ourselves in the foot in medicine. Again, I don't work clinically anymore, but I'm clinical adjacent. I do a lot of work into clinical areas. And I see it time and time again, where so many of these sort of abrasive challenges, you know, people would talk about challenging patients and challenging different things. And I, when you delve into it,
00:46:40
Speaker
They are people dying for answers, begging for answers, looking for answers. And we're not giving the actual answers. We're saying, oh, we think this might be emotionally unstable personality disorder. We think this might be attachment difficulty, but we're not explaining what they are. And we're not explaining the nuance between ADHD and that.
00:46:59
Speaker
And why we are thinking this mental health diagnosis as opposed to a new developmental diagnosis, or perhaps a learning disability diagnosis, we're not explaining that to parents. And that has been a boon of contention for me for so so many years, because it would make life so much easier for everyone. yeah But I think there's fear, a lot of the time, and I understand the fear from clinicians,
00:47:27
Speaker
that if we explain things too much, then parents will somehow have the they'll have the ammunition to be able to use our words against us. Or maybe we don't quite understand these things. yeah Maybe we don't understand the difference and the nuance enough to be able to explain it to people in a way that helps them understand. So it's easier to just say, it's attachment disorder. And the fact that the mom or dad are kicking off now, well, that's evidence that there is a poor attachment pattern in that and family, which is just, it's it makes me quite sad and because it's itrogenic harm, it's itrogenic trauma. it It's the system and caregivers inflicting
00:48:13
Speaker
harm and trauma onto families and parents in that longer term sort of experience. And in my findings echoed that, they echoed that parents really struggled with things not being explained properly, yeah which kind of ties in a little bit to the second form of self biographical illness work that I found, which is but You know, we know how hereditary ADHD is. We know it's you know it's a incredibly common to, her if you've got a parent with ADHD, that is a very high likelihood of a child having ADHD and vice versa. So we know. Now, what was fascinating for me is that when their children received a diagnosis, parents, many, almost all parents had to reassess themselves in the lens or through the lens of ADHD.
00:49:05
Speaker
yeah Little Jimmy, and he's struggling at school, he's got these issues, you know he's an attentive, hyperactive, impulsive, and mom might say, well, that was just like me when I was a Ben. That reflection on that in the interviews, mom was starting going, oh my God, could I have ADHD? Then they begin their own diagnostic quest for themselves. and so By children getting diagnosed, parents are faced to or forced to face a mirror of of maybe I'm also ADHD, for those who are undiagnosed, or if a parent has a diagnosis already, they they are they come face to face with their own belief about their own diagnosis. So as an example, one mother said, I do not want my daughter to see her ADHD as a disability. yeah And I asked her how she saw her ADHD and mum said,
00:50:01
Speaker
ADHD is my disability and my nemesis. And I don't want my daughter to feel the same. So that's interesting, isn't it? Because it's kind of in a way in a logical sense, it's just inconsistent. But also it's completely understandable and it's very easy to empathise with it. So as a mum, she had to hold these contrary positions and the sort of cognitive dissonance of holding those two positions. I want my daughter to think this, but I think this. That's work. That's work, people. that That's effort. That's soul searching for days, weeks, months, sometimes years of, am I disabled? Am I not disabled? I don't want my child to be disabled, but but she is less able, or he is less able at certain things. And that is the definition of
00:50:54
Speaker
how do i How do I manufacture a sense of my own self when my I'm manufacturing this this belief about my child, which is contrary to how I see myself? I give my child so much grace and yet I give myself none.
00:51:12
Speaker
yeah
00:51:14
Speaker
is that right? And yeah, one of the things that always interests me as well is the a pattern that you you probably didn't see and you I don't know if you saw in your in in your families where I would be assessing alongside um um a mother because you know who who would be the person that comes to the assessment and they would the these the features of the child would remind the mother of the father of the child. Yes. And of so so it would be like, well, maybe these traits came from the father. And the fathers very often would be very resistant to diagnosis because it would reflect upon themselves in some way. um And that's a dynamic that I see an awful lot of, um which which is an additional, I think an additional complication for the mother who's also caught in the middle of it, but also but for fathers who are trying to kind of
00:52:11
Speaker
who are forced to make sense of things. in ah And I have some sympathy for them because they're often being told this stuff filtered through a relationship which might be, um many of but you know, they may be in a relationship with the mother, they may be estranged or whatever. So so I have sympathy for all parties there, but it can be really complex.
00:52:31
Speaker
um yeah dynamic. And there's ah there's a really interesting, again, out that there's a paper which specifically looked at fathers by Elena Singh, who I mentioned earlier, called Boys Will Be Boys. And it's about the fatherhood perspective on ADHD. It's quite an old paper, I think it's about 2001 or maybe 2011 or 2001. And one and But nonetheless, we know that fathers are more resistant to diagnoses, generally, and more resistant to ADHD diagnosis. the ah And one of the things that I think is really interesting, and this is where the sociologist in me starts prying, but if you think about when these fathers grew up,
00:53:10
Speaker
you know, 80s, 90s, typically 70s, 80s, 90s. What was the narrative of ADHD in the 70s, 80s, and 90s? You were a naughty little boy, you were disabled, you were in the remedial class, or you were kicked out, or you were expelled, you were unacceptable, you were ostracized. I mean, that was my experience in the 90s. My educational journey was traumatic and institutionally abusive. And so the sort of
00:53:37
Speaker
expectations around ADHD were wholly negative. And we are then telling fathers, by the way, your child is one of one of those, quote unquote, and also you might be as well.
00:53:51
Speaker
And that is really challenging their sense of identity. And I think to engage fathers better, we need to do a few things. One of the things is I think we need to have role models. I often talk about my own diagnosis quite often with but other men to show that ADHD is not just that stereotype and of of a lack of success you know because that's a big thing of, oh, dad's going, so they're not going to get a job, they're not going to get married, they're not going to have a relationship because that's the belief about what ADHD is. And we need to talk about those contextual strengths of ADHD and often move away from purely disability language.
00:54:31
Speaker
ah because it's it ineffective with men. and It's ineffective with pretty much everyone, but more so with men. yeah extra ineffective and So I think we need we need to have bespoke and specific intervention and a real thing about how we engage fathers in not just the diet the ADHD discussion, but also the diagnostic journeys themselves because they burden mother's unnecessary in an unweighted way. with that That happens anyway in healthcare. Mum's the majority of vast majority majority of but anything related to healthcare and school. absolutely and That's well documented across all the evidence. But often we then just blame fathers and say how terrible they are and how they're not involved. but what we I that to just don't think that's helpful. I think what would be more helpful is looking at how do we engage them? What is the system doing to push fathers away?
00:55:27
Speaker
What is the system doing to disengage fathers from being involved in healthcare processes? and This is a longer piece of work and something I am interested in, in a probably different discussion. I know I'm really interested in looking at it. Off our topic, off our ah particular topic, and and we'll probably return to it another day. So I mean, the final strand you had was child biographical work. work and recontextualizing the child. And I think this one probably makes ah the quickest, the easiest to make sense of is when your child gets a diagnosis, you change how you see that child. And that, but that effort and that work. So this can be really positive. This can be cohesive for one parent. I knew my child was new divergent and they are.
00:56:18
Speaker
Great. Great. They can join my neurodivergent wonderful little family. yeah And with the official work has been used from with with me. Yes, absolutely. and We can share the letters after our after our name. For one mum, she talked about ah diagnosis allowed her to recontextualize her daughter from a scatty ditzy girl, which is what her narrative was before.
00:56:42
Speaker
to a girl with additional needs. It's not that my daughter is scatty, it's not that my daughter is blonde, you know, those sort of like unhelpful, patriarchal narratives that come out. It's not that they're a failure, it's that they're working really hard against barriers that most people don't have, against difficulties that most people don't have. the This ability to, as I say, recontextualize, I don't have, and this is ah this with a quote, I don't have an abnormal, atypical child,
00:57:11
Speaker
i have you know i don't yeah I don't have a normal typical child. abnormal typical child I have and normal a atypical child. I've booked that completely. but yeah that's That's great. yeah i It's like I'm normally autistic. I'm not abnormally normal. it's yeah it's they They are a typical ADHD. They're not a typical average person. And that was wonderful for parents. Yeah.
00:57:41
Speaker
And and it's it's just a fine line as a clinician, isn't it? So, well, this is typical because you don't, in a way you almost don't want to say, well, your child is just and another ADHD person. they And you you've got to keep the uniqueness about them. But at the same time, it is very powerful when you're able to sort of, one of the best tricks is to sort of say, you know do they do this thing and they're like yeah they do that thing how did you know and you're like well 90% of people an they do actually it's really helpful to kind of make them feel like okay you recognize this you've seen this before this is not just us yeah and that normalization is was so powerful um i think as well the recontextualization of a child
00:58:25
Speaker
pulls into the discussion around disability. And I think this is where there was this real challenge for the parents in my sample about how do you frame your child in disability language when they have ADHD or when they are ADHD? Because by lawful definitions,
00:58:48
Speaker
They are so so can be a special educational needs register. They are yeah supported by the Disability Discrimination discrimination Act and the Equality Act. It is a register to disability. They are a disabled person legally.
00:59:00
Speaker
Yeah. and And when they go to university, those that do, they need to go to disabled students. And I common always urge them to say, whatever you think of it, just go and get that help. Yeah. So parents went through this really fascinating process. Every single parent, at the time of the diagnosis, whenever I asked about disability, rejected the language. Every single one said, no, no, I don't see my child as having is being disabled. No, I don't think that, no, absolutely not. I don't view him as having a disability. They're not disabled.
00:59:31
Speaker
But then that journey but through the diagnostic journey starts pulling that but logic apart. no I do have to sign the box to say they're disabled. Society tells me they're disabled. I'm getting a medical diagnosis to of objective impairment. ah Yes, i did one of them was like, well, I don't want to use the word disabled, but they are less abled.
00:59:57
Speaker
they're less able, they they don't have a disability, but they are, ah and they would really like, there's this like tentative acceptance of disability language because they had to, because society kind of forces them to use disability language, whether or not you want to. And then so one of them is like, well, it's a disability sometimes, but another time it's not a disability. And it's like, okay, so it's I guess contextual, it's disability. So this like sort of,
01:00:24
Speaker
ah so I call it an oscillation between pro-disability and anti-disability language. It's really tough for a lot of the parents. and then they so They were soul-searching. They were reading up on things. They started finding and you know the the social model of disability arguments. They started finding this term, neurodiversity. What does neurodiversity mean?
01:00:46
Speaker
What is neurodivergence? How is that different from what medicine is saying that I have a attention deficit, hyperactivity disorder, I have an impairment, I'm disabled, my brain doesn't work, I need treated. That's what one group is saying, but the other group is saying it's a normal variation in human existence. Some people are saying it's a superpower. and How do I as a parent find where I sit on that continuum?
01:01:12
Speaker
There's work, that's effort. And then that work comes back in. And then if I want to say, it's not a disability, I'm totally supportive of my child, but I'm going to take, he's going to take medication. Well, that kind of flies in the face of the, there's nothing wrong, but I'm going to medicate symptoms. So how do you balance the decision to use treatment with the belief that ADHD is a normal variation of human existence. And so they would, again, and I'm not giving an answer here on this podcast, I'm just saying this is what my parents struggled with. No, because if you gave an answer, then we just have to close the podcast. So don't yeah there is the because it solve it, guys. ever will go So the parents would, would really battle with this
01:02:03
Speaker
Dilemma, this because it's a logical dilemma. It's a kind theoretical and a contextual one. But these are parents. you know Some of my parents did have very like it did did didn't finish education. ah Some were ah highly educated. And all of them struggled with this sort of theoretical dilemma of where does disability sit? One parent even said, you know what? I don't want to use. They're different. They're differently abled. Diff ability. Can we use the word diff ability?
01:02:31
Speaker
pattern ah They were literally calculating. I love that word. that Parents are creating their own language to understand their ADHD children because they don't speak. The medical establishment doesn't present parents with a robust enough, helpful enough narrative for their kids. That is a social environment. Neither does a neurodiversity paradigm entirely. It's that each one has to sort of make a decision on that. Funnily enough, I've literally just m submitted a paper for peer review a on this very topic of how do we make sense of the two paradigms.
01:03:14
Speaker
How do we make sense of this medical paradigm and what are its strengths and weaknesses and the social paradigm, what are its strengths and weaknesses? But also how do we as professionals and as researchers and as clinicians, how do we pick our own paradigm? Because we have a lot to learn from the other side.
01:03:32
Speaker
A new diversity paradigm has a lot to learn from the medical perspective and the medical perspective has a lot to learn from the new diversity perspective because neither one fully helps people. but Some people, of course, but by and large,
01:03:47
Speaker
neither is quite effective enough. It can um be a synthesis of the two in some way. I argue for a nuanced perspective, because I i would lean, I lean more to different sides depending on the discussion. But it's it's a nuanced discussion. And I think there's too much sort of polarization in the debate here. of like Most debates which are completely unporalised.
01:04:13
Speaker
It's this increasingly unpolarized world we live in. Yeah. So so again, like these pair so parents, they go on this diagnostic quest to make to seek a diagnosis and make sense of it. That quest challenges who they are as parents. Am I a good mother? Am I a bad mother? Am I a guilty mother? i Am I a good father? Have I done the right thing? Is my ADHD a problem? and How do I say my own ADHD? Am I a neurodivergent?
01:04:40
Speaker
And also, how do I see my children? How do I conceptualise my children? And this is almost exclusively hidden work. It's stuff that as professionals, as people on the street, as friends, as family members, we don't realise a lot of the time. I mean, I would like to think I realise now because I've spent five years studying it. and You've probably got a reason. But but but by a lot of society doesn't realise how much goes into getting, receiving, and understanding a diagnosis. Beyond just, it helps me understand my child. Beyond just, I can now access treatment. It's so much more than that. And it's unfair. It is hard work. It is draining. Parents talked about becoming um mentally ill during this process. Parents talked about quitting their jobs during this process. And this is quite common in the other literature as well about
01:05:33
Speaker
parents just being worn down by these demands, these consistent demands, in a way that people don't see. They don't see the burnout of self-contextualisation work. They don't see the burnout of who am I now that I'm the mother of a quote unquote disabled child. I never thought I was going to be the mother of a disabled child and I have to both love and accept my child whilst also grieve the child I thought I was going to have. yeah And as clinicians, as services, I genuinely don't believe that we acknowledge and consider and support that. Because it's interesting, isn't it? Because on the one hand, and I'm not saying that we this is this is contradictory necessarily, but there's a sort of paradox that on the one hand,
01:06:27
Speaker
diagnosis is, as you say, cohesive because it's it's confirming something that the person has suspected and validates their belief, but there's still a grief about it. It's that paradox of both validating and also grief provoking um that that can explain a lot of emotion the intense emotional response to diagnosis. And I think because there's so much effort and fight that parents need to do, they need to fight with GPs a lot of the time because they're not on because the GPs aren't accepting the and screening tools that the parents have done because the GPs... watchful waiting for two years instead of the recommended nice guidelines six months and stuff like that. like Because they're the were waiting for ah two years, three years, five years on an assessment pathway, because all of these problems are happening, parents are fighting and fighting and fighting, and then they get to that week, they get the diagnosis, and then they go, holy, I hadn't realized what this might mean. I spent so long fighting to get here that I hadn't realized the what this would mean. My childhood has a lifelong diagnosis.
01:07:38
Speaker
I didn't think about that. No, because you you just want to tell them now. we Why would you? Yeah. And that is it' massive. And yeah, that paradox, it was really clear that this journey is a is a series of paradoxes. My child has a problem, but I want to see them as normal and they are normally themselves. Yes, exactly. And and the whole disability stuff is paradoxical in lots of different ways.
01:08:08
Speaker
So I suppose want to um I'm so mindful of your time as well as as well as the listeners as well. um Let's move on to implications. What are the implications of your work for clinicians, first of all, for for people who are delivering and and managing this? And that kind of comes back to my question about how can you not give a diagnosis um without being a bad guy?
01:08:32
Speaker
Yeah, so I think implications for clinicians for me seem fairly clear in the sense of when we acknowledge that parents are doing all of this extra work, when we recognize just even intellectually, that how much effort and time has gone into this journey to even get in front of you, when we acknowledge the impact of the things that we are saying that we might not have realized or the impact, we're not just saying no to a diagnosis, we're saying no to hope, we're saying no to a firm belief that a parent has held for four, five, six years, and we are shattering that belief, we're saying to parents,
01:09:12
Speaker
Oh, that GP three years ago, or that teacher who said you were a crap parent, they were right. At least that's what the parents are hearing. Yeah. Yeah. And so when we acknowledge that and we bring that into the room, we we we can, as clinicians, we can talk about these things. We can say, I can understand that this would be really frustrating for these reasons. However, here's how it might be a different way to look at that. That might be more helpful to you right now. Yeah.
01:09:41
Speaker
When we give a diagnosis, we can have a discussion about disability and disability language. We can say some people see ADHD this way, some see it this way, not the way I see it as right. Because I see a lot of that where people say, well, ah some people some people say it's a superpower. And I say, well, actually, not for everyone. Not everyone sees that. And not everyone sees it as a disability. So I think having discussions around what this might mean,
01:10:08
Speaker
is a way that we can m be more effective as clinicians, be more helpful, and we can preempt some of these difficulties. We can preempt that, we can validate and see, and I mean like really see like the sort of hold in your heart kind of see the struggles and the journeys. We can acknowledge when we give a diagnosis that some people may need additional caregiving for ah for a longer period of time, but others might just flourish and might find their calling and flourish. And we don't know what that journey is going to be, but we can we can bring it up that this isn't a death sentence, as some people feel it is. And I think when you're when you're making you know hundreds of diet thousands of diagnoses a year,
01:11:02
Speaker
you might, it's easy to forget that for some parents who don't have the education, the health literacy that we have. To some parents, we are saying, oh, your your child's brain is broken and if and they're never going to have a normal life. That's how it's heard that's how a diagnosis can be heard. Oh, absolutely. Yeah. So bringing that in, and that that's what clinicians, I feel is the most helpful thing for clinicians, recognize and then bring that into the room.
01:11:31
Speaker
Yeah, and and obviously, the clinician in me is like, I mean, I can obviously completely agree, but but i I sort of feel I have to represent the clinicians and say that can be quite difficult given that you are often under considerable time pressure. But yes, I mean, in theory, I think most people would agree that that's a really, you know, that's a really good answer.
01:11:50
Speaker
um What about parents? What are the implications of your work for parents? How should they read it? I hope that parents can read it and and see a little bit of themselves. I think that parents can feel a little less alone. When they read the the sort of concept of plot where all of my you know it's a fight, it's a constant fight, it's exhausting, it's draining, and parents go, you know what, I'm finding it really exhausting.
01:12:18
Speaker
But I'm not alone. I'm not the only person. I'm not a failure of a parent because I'm struggling so much getting a diagnosis. No, I'm the i am the average, which is not like in my situation. But the struggling through this journey is typical. yeah Struggling with how the grief of a diagnosis That's OK. That's what so many people experience because it is a grieving process, but it doesn't but it's also a discovery process as as well. it It is a dichotomy. It can be both a positive and a negative experience at the same time. And parents reading my paper can hopefully
01:13:03
Speaker
see how other parents have made sense of that, how other parents have made choices, not choices, choice choices is the wrong word, but you can see a diagnosis in two different ways. You can see a lack of a diagnosis in multiple different ways. Some parents think about it in one way and it's really helpful. Some parents think about it in a different way and it's really unhelpful because it's harmful to themselves.
01:13:28
Speaker
and You know, when one of my parents, her child was diagnosed with ADHD and she was conceptualizing her own ADHD, she said, oh, I'm less able. I'm less. The word she uses is less. That is a narrative and a perspective on ADHD that was really unhelpful for her. Yeah. Because it was harming. You think of yourself as less, actually.
01:13:53
Speaker
Whereas another parent said, oh, brilliant. We're in a neurodivergent family. We are a neurodiverse family. We're all a bit odd here. We're all a bit wild. Well, they could say the madhouse tea room. That's how she do it. And it's like sort of Northeastern, very comfortable. Now my son can integrate into the family of we're all neurodivergent. And exactly the same experience. You thought he was neurotypical and we shunned him. Yeah. He wasn't normal, you know? And that's exactly the same experience, totally different responses to them. And in one, a mum felt proud of her own diagnosis and the other, the mum felt like less as a human being. Yeah, yeah, exactly. Hopefully, parents can read it and go, there are different ways to think about this.
01:14:42
Speaker
And I have more choice than I think about how I think about this. Yeah. Yeah. Yeah. it's We can change our perspectives. It's work though, and acknowledge that work and accept that work. It is hard work. Again and again, it's this concept of work.
01:14:57
Speaker
I mean, you said it a lot, you said it a lot. And acknowledging and valuing the work that got into this. Yeah. And giving ourselves grace through that journey. You know what, this is really hard. Maybe going through the diagnostic journey is not the time to also be pushing for a promotion at work.
01:15:18
Speaker
Yes, quite. As someone who finished the, I wrote at my PhD with a newborn, don't recommend it. It's timing. And, you know, giving yourself some grace and that maybe when you're writing a PhD with a newborn, I'm not going to be able to do some of my other things. I'm not exercising as much. That's kind of a helpful perspective. Yeah. When your children are going through assessments and diagnoses and you're waiting for this,
01:15:45
Speaker
you can give yourself a bit more grace of you're doing work, you're you're putting a lot of effort in, even if it's just thinking about it, even if it's just listening to this podcast, because you are having even if it's just reading books or articles or whatever you do. That's hard. That's tough. You know, and not everyone has to do that. So we don't need to compare ourselves to other parents who don't have these, again, that sociological word burdens,
01:16:14
Speaker
Yeah, but come um comparing ourselves to other parents is just absolutely human nature and it's and unavoidable. but but if you But yes, but if we can sort of compare ourselves with moderating that by sort of the understanding that you've kind of shared in the paper, that could be very helpful. What about people with ADHD themselves? I suppose I conclude parent, but also the young people who are being diagnosed.
01:16:39
Speaker
Obviously, and they're not the subjects of your research, but what implications would you say that the kind of thinking that you're doing has on them? So I think for people with ADHD, or people who are seeking diagnoses themselves,
01:16:54
Speaker
It helps them to acknowledge that hopefully that this process is more than just receiving a label, yeah more than just receiving a diagnosis. There's a lot more that goes into seeking a diagnosis and assessment than, you know, I've got a medical diagnosis now. Happy days. Life's going to be easier. I'm going to get the support I want. Brilliant. Actually, it's not always that smooth of a ride.
01:17:19
Speaker
and No. Oh, no. But even practically, like, and i and that's the understatement of the century. But I think, like, when people are questioning or ask me, you know, should I just get an assessment? Should I not? And I and i say, well, a diagnosis is is only as helpful as it's helpful. Because for some people, that diagnosis might be morphed into a belief that you are less as a human being, that you are somehow worse. Is a diagnosis going to be helpful if that's the end result of your journey?
01:17:50
Speaker
or is it, or that identity formation that you're going to have to go through to to recognize who you are in this new light post-assessment, whether it's conclusive or it's not ADHD, are you ready for that part of it as well? yeah It helps you to prepare a little for what is coming about your entire identity might shift. And this is we hear this all the time when diagnoses are given in adults. It helps them, oh, I can see my entire life in a different way now. I completely recontextualize my entire life. But for a lot of those parents for a lot of those people, adults getting diagnosis, it's a life lost. There's a grief of ah if I had been diagnosed earlier, I would have had a different life. Yes. and Well, yes, of course.
01:18:39
Speaker
And that that's really tough to experience that. So if you're if you're already you know experiencing low mood, you're already quite anxious, it's thinking, is is now the best time for that assessment for me? Or do I need to build up some sort of my my own resilience and my own coping strategies to face the unexpected outcomes of what a label or not a label might have?
01:19:03
Speaker
Yeah, that's true. But I mean, on the other hand, sometimes you can't build up the resilience and reserves because your ADHD is the thing that's stopping you doing it. So again, again no easy answers at all from any of this. is a and there Unfortunately, there never is. And what it all it is for me is It's just things to contemplate, things to think about. If you go into these journeys without thinking about any the of these things, you are kind of at the whim of the winds. You don't know quite how you might react to it. yeah and If you've thought about this stuff ahead of time,
01:19:42
Speaker
you can pre-prepare for what's coming a little bit. You can pre-prepare that. You know what? When I get that diagnosis, I might grieve. And yeah that's OK. That's really true, actually, because fore warmed as well forewarned is always forearmed. We know this. This this is this this at least we can we can be confident about. That's kind of firm ground we can stand on.
01:20:03
Speaker
So just to go on to the the final question, um what do you want to, find I mean, I know you're doing all sorts of ah million other things, but if you were to do some more research in this kind of area, what would you like to find out next. what what are the Who are the people you haven't talked to? So it's already happening. i In Halloween, so it did october October last year, when I have a PhD student who's just started on their PhD project which is a follow on from this project.
01:20:37
Speaker
what One of the things that I found through, you know, we're seeing more of the research on intersectional identities in ASB. And one of those intersexs that hasn't been in intersections that hasn't been touched on, what or practically whatsoever, is the LGBTQ plus community. okay yeah So my PhD student, Joe, is going to be looking at the experiences of LGBTQ plus parents of ADHD children.
01:21:03
Speaker
Okay, so very similar project, but looking at those intersectional identities of, you know, how does just being gay, for instance, alter your experience of receiving a diagnosis or or seeking a diagnosis?
01:21:18
Speaker
how to how do the ah sort of stereotypical perspectives of what is a mother, what is a father? Well, what how do non-binary individuals navigate those archetypical sort of identities in society?
01:21:35
Speaker
I'm so excited for that. Yeah, that's amazing. that That could be really amazing. I mean, but it's in early days. Yeah, no I mean, and inevitably my no interest in neurodevelopmental ah diversity has kind of spurred me to be interested in gender and and sexuality identities as well, because it's very difficult to be interested in one and not be, cut you know, not be it to a degree curious about how these and interact with with ah these other identities. and So yeah it's something that we haven't really talked about enough on the pod, but we will. yeah it's what And again, it's that thing of when we're looking at identity formation and of which neurodiversity exists and where we we find our identity in labels, you know we find who we are and we find we talk about finding your tribe, finding your clan, finding your people. And there's some really similar parallels in sort of other intersectional spaces. And
01:22:32
Speaker
um i want I want to sort of end on a little linguistic problem that we have. so the sort of stre the The most common moniker used to describe someone with who is diagnosed autistic is autistic person. i' I'm autistic. Someone with dyslexia, dyslexic. Dyspraxia, dyspraxic. That's very, really common terms that are used to self-identify. What about ADHD?
01:23:01
Speaker
what do we call ourselves? Because in some of these other conditions, diagnoses, there are terms, linguistic terms that they can use, that we can use to self-identify outside of the medical diagnosis. Yes, exactly. ADHD does not have that privilege. Because ADHD, yeah attention deficit, hyperactivity disorder, ra ah it doesn't quite roll off the tongue.
01:23:31
Speaker
I think it's yeah it's not bad, but yes, I yes i understand the point. Yeah, and and I just think parents in my study brought that up about how do I conceptualize my child. and i And I wonder if we need some some new language here. I mean, the changing of the diagnostic term has been a debate. Oh, it's a long-standing debate, yes. But even then, the self-identifier is missing a little bit. yeah Yeah, even if you change diagnostic terms. Well, we'll see what happens in the future. And I'm sure we'll, well, some of us will be around for, it you'll probably be around longer than I.
01:24:10
Speaker
ah First, and we different ends of the parenting spectrum, you've just woken ah a two year old up from the nap, whereas my 18 year old is off on a date. So there we are. um So thank you very much for joining us. um And we'll see you again, because we're going to talk about positives of ADHD on on second episode ah with you, which we will arrange in a few weeks time. So yeah, so much.
01:24:37
Speaker
Thank you very much for having us. Thank you to everyone for listening and for all the parents and the people going through a diagnostic journey right now with continental plate in one. Just to know that you're seen. You are seen. We we are recognising now, just even in the research, but in the wider society, about what this journey is like. Yeah.
01:24:57
Speaker
yeah Amazing. Well, thank you very much and see you soon Okay, so there's Tom it was a long interview Tom is somebody who likes to talk and explain things to you yeah absolutely we both like that's not single amounts a very good point well done um The other thing I wanted to say ah first of all obviously to plug the Facebook group We are still growing kind of 200 people or so in the Facebook group now, which is a big party Which is cool. It's not massive by Facebook standards but it's a really nice little group and and a ah kind of safe space for asking questions where no one's going to be mean to you because I will kick them out. Quite frankly. um Personally, pick we'll kick them out.
01:25:41
Speaker
um So if you want to be noticed by the great Max Davey, start posting hate in the ADHD science Facebook group. Yeah, but no being noticed by me, in in that I kick you out of a group and never see you again, might not. Anyway, it depends. on Different people have different things that they want attention for. Okay, alright.
01:25:58
Speaker
um the other thing we want to talk about is we are going to do a kind of live show it's not ADHD science the live show yes but it is us doing the live show it's going to be just as jumbled and messy as this is yeah i suppose in that way no it'll be better than this we'll actually prepare we'll have slides right yeah yeah yeah So we're going to do ADHD unpacked. Unmasked? I was gonna say unmasked, but then I was thinking i was thinking of the traitors. That feels a bit too, a bit too, I i haven't seen that. Okay, fine. I haven't seen the new series of traitors, everybody. Okay, okay, I get it, I'm sorry. I thought it was okay. I haven't had the time. That was, yeah.
01:26:37
Speaker
Well don't tell me that now, that's a spoiler. You can't spoil the fact that the show is air. It's fine. What's the point of what we're saying? The point of what we're saying is that the 18th of February at lunchtime we are going to be speaking in Norwich which is not necessarily the most accessible place in the world but that's where we were invited by as part of the Norwich Science Festival. So we are going to be unpacking ADHD mainly focusing on misconceptions.
01:27:04
Speaker
So basically, go online, I'll put a link to the ticket um link the ticket booking link in the show notes. It is free, we're not charging anything to go. um and then Well he is and I'll have a collection box at the door.
01:27:20
Speaker
and you know we just would be lovely to see as many of you there as possible and um we'll have lots of nice chats mainly I think we're probably gonna talk about ADHD misconceptions that's the plan although I haven't spoken to you for a few days so you might not know that I've been busy ah anyway all right that's it for today and I have to go ches has to go to work again