Episode 19: ADHD Is Not a Debate: The Cost of Manufactured Doubt

What happens when established ADHD science is repackaged as a public controversy?

In this episode of the ADHD Wise Podcast, I’m joined by Rachel Boss from ADHD Jersey to discuss the growing media pushback against ADHD awareness, diagnosis and treatment.

Our conversation was prompted by the provocative publicity surrounding an upcoming Channel 4 documentary. But this episode is about something much bigger: what happens to real people when ADHD is framed as questionable, fashionable or an excuse.

Rachel and I both reached adulthood without our ADHD being recognised. We discuss the adversity, shame and self-blame that can accumulate when people don’t understand why they are struggling, and the difference that diagnosis, informed support and medication can make.

We explore:

• Why increased ADHD awareness inevitably creates pushback
• The damage caused when ADHD traits are treated as moral failings
• Why punishment cannot remove a neurodevelopmental condition
• The difference between diagnosis and medication
• Why medication can be life-changing without being right for everybody
• The generations of women and girls whose ADHD was overlooked
• The consequences of five-year assessment waiting lists
• ADHD, vulnerability, addiction, education and the justice system
• Why understanding ADHD creates responsibility rather than excuses
• The human and financial cost of leaving people unidentified and unsupported

ADHD is not a myth, a moral failing or a failure of discipline. The science exists. The important questions are whether people can access appropriate assessment, understand their own brains and receive the support they need to thrive.

As Rachel says, knowledge is power. We are too far out of the box to be pushed back in.

Rachel Boss is the founder of ADHD Jersey, which provides education, community support and programmes for people affected by ADHD across Jersey. ADHD Jersey will welcome organisations from across Europe when Jersey hosts the ADHD Europe conference in May 2027.

I’m Jannine Perryman, SEND specialist teacher, neurodiversity coach, trainer, speaker and consultant.

Subscribe to the ADHD Wise Podcast for honest, evidence-informed conversations about ADHD, autism, education, diagnosis and neurodivergent life.

Transcript

SPEAKER_01 0:00

Thank you so much for joining us on ADHD Wise Podcast. If something in this episode has helped you, made you think, or given you language for something you've been living with, you can support the podcast by following or subscribing, leaving a review or connecting with ADHD Wise on YouTube, TikTok, LinkedIn, and Facebook. Every share, review, comment, and follow helps the podcast reach more people and helps us create conversations and resources that support neurodivergent people, families and professionals. Thank you. Your support really does mean the world. Welcome to ADHD Wise Podcast. I'm Janine Perryman, and this is a space for open conversations about ADHD and neurodiversity, bringing together lived experience, professional insights, and the questions that help us move forward. Wherever you are in your journey, you are welcome here. Hello and welcome to another edition of ADHD Wise Podcast. My name is Janine, and today I'm joined by Rachel Boss from ADHD Jersey. So, Rachel, we've done quite a lot of work together in the past. I was at your conference last year and I'll be at your conference next year. We'll talk about that in a little while. What brought us together today was our discussions around the upcoming Channel 4 documentary, which I believe you have some opinions on, and I do too.

SPEAKER_00 1:19

There's a feeling of there's a shift in the media around the reporting of ADHD. And we know that these big headlines sell. And because of the producers as well and the history behind them, we're kind of all a little bit worried about it. And I'm worried about it. I've had inboxes from people saying that they're really worried about it. So it's it's like we're in this holding place again that ADHD always seems to be in of what's coming, really. What's next?

SPEAKER_01 2:09

Just to sort of clarify, the headline reads New Channel 4 documentary, The Great ADHD Myth Question Mark, seeks to determine whether ADHD is a genuine neurodevelopmental disorder or a social construct. Now that is provocative, and I feel like they're hiding behind the question mark. The great ADHD myth question mark. Because I feel like those people who are committed to misunderstanding ADHD will not notice the question mark. They will just say, oh, the myth of ADHD, ADHD is a myth. And I think that's kind of like what will hit those with the who whose confirmation bias is, told you, told you ADHD was just a myth, just a made-up thing. And then looking at the quotes from the people involved, from the professionals involved, they're quite concerning as well, aren't they?

SPEAKER_00 2:55

Yeah, definitely. And especially when it uh there's one of them that the doctor that says um it's because of corporal punishment that that the ADHD, that we now we've banned corporal punishment. ADHD is um rife. I mean in Jersey anyway, I mean we we always talk about putting the children first, children first, children first. Yeah. And obviously, it's not right to hit your children. Okay, that's why we've brought in the ban on corporal punishment, obviously. Yeah. And and what we're doing is we're now listening to children. But what appears to be happening is we will only listen to children when it suits us that we'll listen to children. I mean, we we we do have a lot, don't we, on um like the workplace adjustments, etc. But we still expect our children to sit in stiff uniforms on stiff chairs with no workplace adjustments whatsoever. His broad statement like that, it's um it's it's it's deeply worrying because then it will just be, you know, there could be other people that think, oh, well, you know, maybe we should bring back smacking our children to beat compliance into them, so to speak.

SPEAKER_01 4:02

Well, see this is one of those things, isn't it? Because I I wasn't diagnosed with ADHD as a child. And I um I've spoken about this publicly before. Um, if if it was possible to smack ADHD out of a child, I wouldn't have ADHD. Same. Um I you know, was I was slippered quite regularly for things that were just I was just bewildered and I'd get slippered and it changed nothing other than gave me trauma, you know, and so I just look at the whole thing and I'm like why is corporal punishment being mentioned in the same breath as ADHD? Because they're not related. They are not connected other than in other than when you when you think about trying to control children by making them scared, by scaring them, by smacking them, by hitting them.

SPEAKER_00 4:49

And it will again the symptomology behind ADHD is seen as moral failings, isn't it? So And we're still punishing our children for lateness, etc.

SPEAKER_01 5:01

Yeah, it's an interesting one that the fact that corporal punishment was even mentioned. There's also something in in what they've talked about in their write-up about um education, and there's bits of me that kind of approves of the experiment that they're taking, which is you know, if they've taken a a a young person and they're seeing if they give them an exercise regime, etc., they can get them off of medication. Now the reality, I'm gonna say to you, and I think this is this is born out in literature, and it's it's just one of those things, is that of course, if you increase somebody's exercise um regime, particularly at the beginning of the day, their ability to concentrate for the rest of the day is going to increase, regardless of ADHD, that's true. And I think we could there's also some criticism in the write-up potentially around the education system and what needs to change within the education system to accommodate children with ADHD. Um, and again, I would agree with that. I think there are some changes that need to be made. But the reality is that ADHD, there's nothing wrong with being ADHD. I'm ADHD, Rachel's ADHD. Neither of us were picked up as children, both of us experienced adversity as as a result of not being picked up sooner. Both of us recognized that at the point at which we received a diagnosis, we probably started to cost the NHS less and other systems less. But there were times in my adult life where I look back and I can tell that what was wrong with me was I was completely burnt out from masking, from just not being able to cope anymore with the demands being placed on me. And because I didn't know what was going on with me, I was needing tests and I was needing support from the NHS and from other systems that I probably wouldn't have needed if I had realized what I now know, which is you're exhausted, Janine, from trying to manage all of these things when you're not you shouldn't be expected to manage all these things the same way as everybody else. You need to have a different way of managing them. But I was falling under the weight of not being able to cope because didn't understand what was going on with me. I was trying to be neurotypical, and trying to be neurotypical, trying to live up to all those neurotypical expectations was burning me out, and then I would need NHS support or other support. And as a child ended up in the care system, and in my conversations with my mum, we both feel like that wouldn't have happened. So, how much money have I cost my government, my local authorities, whatever, as a result of undiagnosed ADHD?

SPEAKER_00 7:31

And I think you've got a similar story, haven't you? I was also in the care system, I was adopted, and and I was lucky enough to actually meet all of my adoptive family when I was um only 15, Jersey, um, myself and my twin. Usually, if you get adopted in the Channel Islands, you usually go to Guernsey or um the Guernsey kids would come here, so there's not really much um option of you bumping into your birth family. But um our our case was quite um uh an unusual one where we actually stayed in contact with my birth nan, um, my actual great nan. So um, but I didn't I I so I always knew that I was adopted, but I didn't actually find out that I was adopted. Um sorry, my I didn't meet my birth family until I was 15. And I met them because I was in my maths class, and the boy across from me in my maths class used to babysit for my brothers and sisters. So um that's how I actually met my um my natural mum. Um my natural mum had had um myself and my twin when she was only 17. Um and you can really re I mean you can really see the the ADHD going back in the generations. I mean, even with my great-grandma, I can see shakes of ADHD. I mean her her house was bursting with arts and craft. I mean, bursting. She would paint on the bathroom tiles, little pictures on the bathroom tiles. So, you know, just like really quirky things like that. So there was there was always something. And then I when I met my um when I met my um my birth family when I was 15 and I met um my little brothers and sisters, uh, there was a lot of talk about my brothers actually being ADHD because then obviously ADHD was just a boy's condition. So, you know, um, yeah, my brothers, unfortunately, they've um they've had a a pretty rough road, you know, the typical ADHD story, failed school, in and out of prison, etc. You know, and it's it's now they've they've stabilised now, thankfully. But, you know, and and even with myself, I mean, I was I was a tearaway, a little, and I will admit it, a literal tearaway until I was probably in my 30s, my early 30s, when I started thinking, I'm not what everyone had told me. And I still didn't know that I had ADHD then either. But I my journey changed um when my girls were about 18, I've got twins when they were about 18 months old. And I just thought I can't live my life like this anymore. There must be something more. And um I ended up going to Bright's Futures, this this place of Jersey called Bright's Futures, and did some programmes, etc., and then went to uni. And um I I I never thought I would ever, like I said about I talked to you previously about my school report, I never thought I would be capable of going to uni. Never thought it, never thought it. And to go to uni and to study something that you love gives you so much passion. And I think because of all of that, and then finding out in the middle of uni that I had ADHD, when I was literally like, I I called my doctor and I was like, I am, I am, I really want to do this, I love this subject. Why is it that I I can't focus on the lecturer and write my notes at the same time? I cannot do it. So what I was doing is I was um going to the lectures, taking everything in but nothing in, then going home and having my uh assignment to do, which obviously you get months in advance. And I was obviously only doing the assignment, starting it from fresh because I couldn't do that note-taking three days before, and doing all that re-research and writing the whole assignment, typical ADHD with seconds to press the button to get it in. But I managed to do it, you know, and I managed to do my A levels and my GCSEs without any any medication. But now that I've got the medication and I can see the difference and the flow that that comes with medication and comes with treatment, it's unbelievable. I mean, I I used to drink a lot, and I'll put my hands up, I used to drink a lot, and there was a lot of trauma in my life, and I used to reach for a bottle of wine because that was that was the way that we did it. I mean, you know, my all of our parents, but it was like the pub culture, you know, leave the kids outside in the in the car with a packet of grips and a can of coke, you know. So I was always brought around, I was brought up around alcohol. It was the thing to do. But now um with my ADHD meds, it's that that pull to have that bottle of wine every evening's gone. You know, it all of that um questioning myself all the time has gone. Just being able to manage everything and to know that you've got an answer for everything. I mean, that's the thing, it's like so many people don't understand why you want to label. Well, we want we want to know why. Why has this happened? Why wouldn't I have been trying and trying and trying and trying to succeed my whole life and I keep failing? Why? So, what is so wrong about that? And you, you know, we've we've had about oh well, people that are in their 60s and 70s, you know, they shouldn't really get a diagnosis because they're wait they're wasting the time for the youth. But there's really some. That's very ageist. That's incredibly ageist. Exactly. But there's some 60 and 70 year olds that as are struggling with what's happened to their whole life, and they want an answer. And you know what? They might not want medication, but if they want that answer, give them the answer.

SPEAKER_01 13:11

Yeah, I agree. I completely agree. How do you solve a problem until you know what the problem is? And I know I I literally very, very quickly after getting my diagnosis, I started to solve the problems because I understood what the problem was. I could drop this narrative of you're just you're just rubbish human. I realized it wasn't a rubbish human, I was a struggling neurodivergent person. And that that in itself, just that little bit of information, just meant I was able to start solving my situation my own problems. So the example I regularly give is that um I used to run out of fuel in my car all the time. Talk about a metaphor for life. Um, you know, I used to run out of fuel all the time in my car because it just, you know, just I because I just would never build in that time to to get it done. And then I jump in my car the next time and I'd be like, oh, I meant to do that before, and I haven't got time now because I'm running so late. So it was it was a conversation I had with myself shortly, and I'm talking days after my ADHD diagnosis, where I was driving home from work and my fuel light came on, and I was like, Oh I'll just I'll just get up t early tomorrow and leave early. And I had this word with myself which was no Janine, you will not remember to get up early tomorrow to go and do it. Go and do it now. Now that might sound obvious to most people, but it isn't when you it's your lifetime of chaos and not knowing that you won't go and do that thing tomorrow, because you don't know yourself, you don't know that there is a biological reason in terms of the way you are wired that will mean that you're not thinking when you get home this evening or you just to set an alarm or you won't think first thing in the morning, oh I've got to go and fill up my car. You're not gonna hold that information in mind, you're just not, you're going to be running late and you're going to push it again. And so I was like, I'm gonna go and get the fuel now. And I went and got the fuel now, and I remember talking to myself while while I was filling up with fuel, going, This is how it has to be from now on. You have got to keep a reasonably full tank of fuel from now on. And I used to then I then had a pattern where it was just like I would get paid, and one of the first things I would do is I would fill up my car with diesel straight away. As soon as I got paid, it was one of the first things that I would do. I would fill up my car. And actually, that's how it's not just fuel, it's how I have to be with food in my fridge, it's how I have to be with energy for myself, it's how I have to be with so many things in my life now. I cannot run on reserves. If I'm running on reserves, I will crash out at some point. And it's just knowing that because I realize that the dysregulation of me means my capacity for things goes up and down, round round, and uh is is not predictable. It kind of is now that I've kind of got to real grips with it, but I couldn't from the big in the early stages work out what that was. So running on my reserves is just not a way I can live anymore. I know that I can't live on the reserves of my money, I cannot really live on the of my fuel, of my energy and everything else. I know that. Because I know that my ADHD isn't in charge of me, I'm in charge of my ADHD.

SPEAKER_00 16:12

But you can't get to that point unless you're diagnosed. You just don't know, do you? And even though like so many people can can say, like, you are the poster child for ADHD, when that ADHD test is coming up, you're going, what if I'm just a dick? What if I'm an idiot? What if I'm just stupid? What if they find out? I mean, that's what I've heard from so many people, you know? It's like, what if they find out about me? And that is just so it that is just such a heartbreaking thing for so many people to deal with, and then get the answer, and then just go, here's your tablets, bye. I mean, that's this is where we're at. You know, we're not we're not we're not explaining any of it to anybody, none of the executive functioning.

SPEAKER_01 16:54

There are so many clinicians that I've spoken to who think the only reason to give people an assessment for ADHD is if you're gonna give them meds. And that is not the that they are two separate things. Getting a diagnosis and and making a decision about meds, they are separate things.

SPEAKER_00 17:08

Separate things. Yeah, a hundred percent. I mean, we we we have people that come that come to us and and they don't want meds, and that's you know, it's all a personal choice. For me, meds are a lifesaver, an absolute lifesaver. And for a lot of people, they are. Um, I'll talk about the experience with my girls anyway, but um kids and meds, it's difficult. It really is difficult. You need to be looking at the dosages of the meds when the kids are on them. My children refuse to take them, and a lot of children do, because they don't they don't like that um feeling of being restricted in their minds, you know. Um my Tiani is incredibly creative, incredibly creative, but hasn't managed, didn't manage very well through school and everything. And it's only now at 17 when all of this maturity is starting to build up. I think it's time that I went back on ADHD meds, you know, and the and the change in her and the productivity in her and her happiness levels, and all of this is just blooming at the moment, you know, and I'm gonna get quite emotional to be honest. I'm I'm 50 next year, and for the first time as being a mum and having all these children in my house and around me, I feel finally that things are starting to get in control.

SPEAKER_01 18:28

Yeah, and and you deserve that. And and if that's if meds make that possible for you, then meds make that possible for you.

SPEAKER_00 18:33

Yeah, and I and I just I think that and that's the thing as well, isn't it? There's so many mums out there that I just you know, they don't they don't know if they're ADHD, they're not aware of then you know, that all of this uh twins and twin teenage twins and arguing, I have, I've got the book, if you need help, come to me. When you're a mum with ADHD as well, it's and you don't know that you've got ADHD, you don't know that your emotions, you're emotionally dysregulated. You don't know that. And so when your child's emotionally dysregulated and you're emotionally dysregulated, and the house is just chaos, it's just a whirlwind constantly. Yeah, I think I lived that for 14 years or so, 15 years, and it's only now that it's starting to calm down.

SPEAKER_01 19:24

Do you feel there is more going on for you or for your child, but you are unsure where to start? At ADHD WISE, our neurodiversity pathway offers a cross-neurotype assessment for adults, children and young people. Cross-neurotype means we look across a range of neurodevelopmental profiles and differences, including ADHD, autism, dyslexia, dyspraxia, dyscalculia, language and communication, sensory processing, executive function and regulation. The pathway includes WiseClear, which helps collect detailed information from you about everyday experiences, strengths and challenges. It also includes Kraos, which gives us an evidence base based on activities that you perform online that shows us things like attention, memory, reasoning and cognitive processing. We then build this together with a semi-structured interview so that we can triangulate the information and build a clearer picture of what may be going on for you. The aim is to help you know where you are, what might be contributing to the challenges that you or your child are having, and deciding on next steps, whether that be a diagnostic, support in school or in work, coaching, adjustments, or simply better understanding yourself or your child. The Neurodiversity Pathway is about clarity, direction, and helping people be better understood. You can find out more at adhbwise.uk and look for the Neurodiversity Pathway. So I'm also a mother of twins, which um is uh and we're not when please please don't think we're we're sort of sort of talking about twins in correlation with, but the reality is we both we both do have twins. Mine are 24 soon. Um both working, one's a graduate, one's not. He's then my son is doing a very physical manual job. He's uh an IT installation, so he's you know, running cable through here, climbing up a ladder there, sorting this out, drilling a hole, and then having to sit down at a laptop and troubleshoot. Um because his job is so physical and easy finds interesting, he doesn't need medication. Now, my daughter, whose work is very much sit down, have to sort of concentrate, have to get through things. When it's things that she's really enjoying, she can probably manage. But the reality is is Becca chooses to medicate. So they they that's just the the way that is. Becca chooses to will doesn't because they've got a different sort of lifestyle that they're managing, and um therefore that's kind of like how that works for them. I was medicated as soon as I was diagnosed at 41. I am now fifty three. Um I cannot medicate now because of another health condition, which means I I cannot um medicate, but one of the things I will I'm so grateful for the period of time where I was, because I learned what concentration means. I learned how to learn, I learned how to do things in sequence because I well the way I explain it with regards to ADHD medication was it's like your brain without it is just so busy and it's like a uh a bubble gun. And so the logo is related to ADHD-wise. The reason it's got bubbles on it is because of that. It's like, you know, the whole thing of that the uh everything is just popping everywhere, all at once, everywhere, and you can't see it all and you can't access it all. And what ADHD medication did was it slowed it, didn't really it didn't stop it, but it slowed it down and sort of like into a more of a funnel, so everything was in front of me and I could see what I had to do much more clearly, and then I was able to move from one thing to the next thing to the next thing. So my brain was far less chaotic, which means I had more successes. Now, in that time of having more successes, I learned so much about myself and how I could function that even now without that medication, I still lean into those strategies, I can still make a decision as to like how I'm moving forward. And yes, my brain is much more chaotic than it would be without medication, but it's not just not an option for me. So it's but I learnt so much about me on it that I have been able to replicate off it, and I think that that is I deserved that, and society benefited from me having it as well, because I wouldn't have got to the stage where I am, I wouldn't have been as successful as I am if I hadn't have had that period of time. So I deserved it, and society deserved it.

SPEAKER_00 23:33

And your family deserved it as well, you know. It's like that's that's the thing, you know, it's like everyone around deserves it, really. And it's never just one child, is it? It's always, you know, one child and the parents and the grandparents. I mean, that's just with the genetic sides of ADHD, but for that, for that child and it on its own, it's like that child is affecting so much around him, friends, family, teachers, all of this that's going on. And we really need to be looking at it more joined up, I think. How we're working in Jersey is we ADHD Jersey wants to be the agency in Jersey that everyone goes to for ADHD, and it's the same message across the board to to criminal justice, to teachers, to education, to everyone. This is what ADHD looks like, because that's we don't even teach our parents what it looks like. They've got parents have got no idea of the brain functioning behind executive dysfunction, you know, the um the switches between the executive function network and the salience network. If we start, if we explain these to our parents, you know, it it's going to be just making it so much easier for them to understand, but also for the the children too. You know, if we if we talk to that to our children about how their brains are working, this is what's happening. That's why you might be stuck right now and and not able to switch on to the next thing, you know. Just bring it instead of all of this blame and shame and all of this, it w I don't understand why we can't why has nobody ever explained to anybody what ADHD actually is?

SPEAKER_01 25:06

Why is it all it's it's but it's basic? Yeah, it is. And and and never and never to make excuses as well. It's like, okay, this is why you're struggling. Now what are we gonna do about it? So it's not like oh I've got ADHD, therefore I can't help it.

SPEAKER_00 25:22

Yeah.

SPEAKER_01 25:22

No, of course you can.

SPEAKER_00 25:24

That's it. I mean, people with ADHD never really do do that, do they? Because we are the most uh persistent, trying people. And it you know, if somebody with ADHD gives up, you've pushed them that far because it's you know, they just want to approve um and be approved and be accepted. That's I mean, that's all I've seen running ADHD jersey for about five years.

SPEAKER_01 25:46

I agree. If they've given up, it's because of the trauma and the adversity that's been lumped on top of them that they need to be supported through in order to actually be able to realise their worth and their their ability to actually move through things. But if they've given up, it will not be just because of their ADHD, it'll be the the compounding things on top of it. And this is why we're saying, what is the cost of not meeting the needs of people, not identifying ADHD, leaving people struggling? And it is it's the adversity on top, which means I think they then give up.

SPEAKER_00 26:18

Well, it's it's it's absolute it's billions, isn't it? It's of course the UK anyway, it's billions. But I mean for Jersey, I mean, we know that the the estimates, well, I mean the European studies suggest that £20,000 per person per year. So, and then what we're looking at uh six percent in a hundred thousand people. So that's a lot of people. We also have to remember that the prevalence rates of ADHD are only those that are diagnosed. So what's what's going on with all the people on the waiting list?

SPEAKER_01 26:45

Well speaking of waiting lists and the increase in demand. Part of the reason that we've had an increase in um people identifying as ADHD and wanting an assessment is because women and girls were suddenly realised uh to be sort of like part of this picture. So you could expect then immediately that there was going to be an upstep in the the demand for and this was just redressing the balance for the fact that 50% of the population had been ignored before, because all the women have been ignored before, and then you've got the backlog, and them trying to push against this backlog against um identification now. This is a women's issue. This is a women's issue. We've been ignored, and we're saying we're not going to be ignored anymore, we're we're we're gonna push for this. And of course, with every woman who then uh recognises this for herself, they might recognise it for their son, they might recognise it for their partner, and so actually, this is a very, very much a woman's issue, and and then them pushing back against people being um assessed, identified, and supported. So keeping medication is a separate issue to some extent. Yes, it's really, really helpful. ADHD for medication, ADHD medication can be a life changer. I went from being a non-believer, just I'm just taking a tangent here, I went from being a non-believer in ADHD when they want when they gave my daughter an ADHD diagnosis at 19. She'd been diagnosed with Asperger's when she was eight. They added ADHD when she was 19, and I was angry because I didn't believe in ADHD. But I was wrong, and I knew I was wrong because they gave her a medication, which they had to talk me into, um, and even though she was 19 because she's got vulnerabilities, um, and it was like seeing a key and turn and a lock in terms of what it did for her. And I realised in that moment that I had been completely ignorant, and and it wasn't it wasn't there was no intent, no ill intent on my part. So it's like when I when I hear people resist it, I don't even blame them because I know I was. But love wakes us up. Love wakes us up. Seeing my daughter suddenly be able to access parts of herself she couldn't before because of medication. I just realized how wrong I was. All of those things, you know, it's just whatever it happens to be, big or small things, our children deserve to thrive. If getting their neurotype identified is part of that journey, what's the problem? There's more problems with not not identifying. Now we we both know of people who have had really negative outcomes as a result of not being diagnosed.

SPEAKER_00 29:15

Oh, 100 100%, yeah, unfortunately. And yeah, I mean, you know, we could we could talk about the suicide risks of ADHD. It's just it's so sad. I mean, what do we do? I mean, what do we do with the with the documentary that's coming out? Do we reconvene in a month's time and go over what's happened then? Like, you know, it's um We need the magic wand, don't we, Janine? I think. I mean, I I I would love, I mean, I would absolutely love for me and for Jersey, I would love to have um keyworkers working for us, and then literally going through like, you know, you have a one-to-one and then you sit down with the with the patient and you literally, well the client, you and you go through a tick box, like how is how are you how is your social life getting on and how's your relationships, how's employment, how's your home life, you know, your finances, and like really just go through these things and and then kind of see where they need the most support. You know, it's our our steps programme on Southworth is it's just flying. I mean, we're on our um uh we'll be starting our seventh cohort in September, and the the the guys that do it, they just they they literally leave and take you can literally see them take it off, you know, when when they when they go out. And it's I mean, that's between the ages of 20 and 60, and some of them have never, ever in their whole life thought, oh my god, I can do something because they've been so put down for so long. And it's just I mean, like I said to you, it's it's so simple what we're doing. We're not doing anything extraordinary, we're just explaining what ADHD really is, and then we're trying to repair the damage. That's what's you know, but all those people that have been left, that's all we're trying to do, you know, and it's but it's working, which is great over here. I mean, the public for supporting ADHD jersey is absolutely amazing, but we've still got no funding. I'm still five years in, I'm still not getting paid, I've got no paid staff, and it's just are you trying to work us into the ground, you know? And but that's ADHD all over, isn't it? We will work and work and work and work. We won't give up now. I mean, thank God I've got 20 of the most amazing volunteers and we'll keep pushing, we'll bring our teenage program in, we'll get you back over in there, you know. It's like all of these things that there's no there will be no stopping us, you know. And but I think that that is the beauty of ADHD is that when we've got a B in our bonnet, we will not drop it. And there is there's an army of us now, I think. So Well, I think that's the thing.

SPEAKER_01 31:50

We were talking about why is this happening and just before we came online, just before we first record, we were talking about that. Why is this happening? Um, and I was saying to Rachel, I think part of the issue is that progress never happens without pushback. And we're in that pushback stage, and there's this stigma and prejudice and the the attempt to shame the ADHD out of people is is rife at the moment. Um, but I think that's I think that is symptomatic of the fact that we've been very successful in terms of raising the the awareness of of ADHD and pushback is where we are, and then this is just part of progress. So keep pushing people because actually, you know, if the fact that world leaders are talking about autism and ADHD is is is evidence that we're we're doing a good job of of creating awareness and acceptance um because they wouldn't be talking about us, they wouldn't be bothered about us if we weren't doing such a good job of of making people aware of it. So we have to carry on, which is why the work of ADHD Jersey is, you know, it's why I support it so much because I think what you're doing over there, you've got added added struggles over there on top of the ones that we have here in the UK. But you're hosting ADHD Europe's conference next year, aren't you? Which is amazing.

SPEAKER_00 33:03

Yeah, so we're we're in a really good position where we are. We joined ADHD Europe um last April. Um, and then Charlie and one of our girls, Charlie and I went to um Parliament and we spoke in Parliament, which is absolutely delightful. Um we then went to Athens um sorry, sorry, April last year it was that we went to London and enjoyed ADHD Europe. We went to Athens this year and we submitted the vote for the ADHD Europe conference and we won the vote. So uh we've got 30 ADHD organisations come into Jersey in May. So we will be holding a big conference and again, so and it will be a public one as well. So if anybody wants to come, come over and meet us.

SPEAKER_01 33:45

I will definitely be there.

SPEAKER_00 33:47

For sure, 100%. Yeah.

SPEAKER_01 33:51

Um and and you know, this is the thing, it's like everybody pulling together. Um, and that's what it's gonna take. We need a team, we need to be a team, we need to recognise that we're only getting pushback because we're successful. Um, and I mean I went from feeling like I was the only one to realising that the that my community is massive and that I have a voice and that I have something to say and that I have something to contribute. And I think that we just need to keep giving people that, you know, because the cost of not identifying people is bigger than the cost of identifying people by a long chalk, by a very, very long chalk. Um so we need to keep going with with with more of the same.

SPEAKER_00 34:34

I was just gonna say there's got to be a I mean, I don't I I don't know what it's like over in the UK, obviously, but um your n your numbers. I mean, obviously there's gonna be a lot of people that have gone private as well. Do you count those numbers there?

SPEAKER_01 34:46

I don't think the numbers are are counted particularly well, actually. I think the record keeping on on actual identification um on diagnosis is is not great. So I think it comes down to whether it's registered with your your GP as to whether you're uh whether whether you're diagnosed ADHD or not. Um or at least some data is based on that. Others might be sort of like based on clinicians saying how many people they they diagnose, but you know, I think it's just it's not clear enough. Um and that the the the the issue now with private diagnoses is that the NHS is resisting shared care and things like that over here now, so that is more problematic, and lots of waiting lists closed. In Scotland, for example, they closed the waiting lists and rif are basically refusing to do anything. And it's like it's just unbelievable, really, isn't it?

SPEAKER_00 35:38

There is no shared care in Jersey at all. Um we've got um 1,500 on the waiting list, and anyone going on now will be waiting five years. Which is a bit strange to me because I'm actually getting clients coming to me now saying, I've already been waiting five years, so when will I be seeing?

SPEAKER_01 35:56

Uh one of the things we talked about when we were over there for your conference was that say a student, for example, from Jersey has a diagnosis, is medicated, it's got a prescription even in Jersey, they go to the UK to study and they probably won't be able to access meds.

SPEAKER_00 36:12

Yeah, yeah. I mean, I think I'm not sure about what's going on with the private diagnosis, but I think now that the government-supported people will actually do have a pipeline, but I wouldn't say that the private people do, and this and this is the issue because obviously Jersey is supposedly such a rich and affluent place. We have had, we have got so many private prescribers out there. We've got no idea who's actually been diagnosed and who hasn't on the waiting list. So it's all and then what how how is that continuation of care going on? Because obviously it's only psychiatrists that can diagnose here too. So, I mean, what what happens when that psychiatrist is is away on holiday, etc., you know, i in the in the private in the private care. So there is a there is a lot of concern over here too, but there just seems to be a lot of concern and little action. And I mean if we're weighing up the cost of ADHD and the cost of helping What what is more thing?

SPEAKER_01 37:11

Well, this is this is the challenge, isn't it? Because we the the vulnerabilities for individuals with ADHD are are many and and significant. And you mentioned suicide rates. Um we know that those in the justice system um are more likely to be ADHD. My particular interest is in vulnerable victims of crime, of which neurodivergence is one of them. Um you are much more likely to be a victim of crime if you are neurodivergent. So understanding your neurodivergence is, of course, then a protective factor to not being a victim of crime, not being a perpetrator of crime. Um neither you nor I would ever sort of like say, Well, okay, you've you you did that because you're ADHD. Oh well, never mind. We're not looking to excuse anybody, you still did what you did. You know, there's there's all of those things that culpability is in that mix. But recognising the vulnerability means reducing the vulnerability. And this is where we sit, and this is why it's so important, which is why we're so cross actually about the title of the Channel 4 documentary, just going back to that. And I'm kind of hoping that actually when we watch it, it's much more balanced in terms of its argument, but it's provocative in terms of its title, and so therefore, you know, we know very well that's because that's going to get more people to tune in. Because if it was just like a safe little, oh, let's have a safe little look at ADHD, people wouldn't tune in. So that's why they've done it, but it's just so, uh.

SPEAKER_00 38:38

No, not it it it is. It's that it's that um not again feeling, isn't it? Like all of that work that we've done for so long, and you're just one title and you're ruining it all. Stop!

SPEAKER_01 38:48

Yeah, because people's confirmation bias. The average person's confirmation bias will be like, oh yeah, the myth of ADHD, ADHD is a myth. And that'll be as much as they think.

SPEAKER_00 38:58

It's quite surprising to see Channel Four like this, because they're not usually so well, they I mean they are provocative, but they're not usually as, you know what, in this way, type thing. So against the science, really. I mean, that's that's it, isn't it? We have the science. We know ADHD is real, we know it's genetic, we know all of this. We've had paper after paper after paper saying it. So why are you saying is it a myth? No, it's not a myth. And that's that's the question, really, that we should be asking, isn't it? You know, why are you saying this? Yeah, because of pushback. Yeah, exactly. Uh yeah, and so we'll see, and fingers crossed that they, you know, they really surprise us, and it's you know, a really good, balanced documentary.

SPEAKER_01 39:50

Let's hope so. So bearing in mind the ADHD wise audience is pr pr pretty much people like us, Rachel. What would you say is the message they need to hear from you right now, specifically from you? What do you have to give to people right now?

SPEAKER_00 40:04

I would say that you're okay, basically, you know, and it's alright to be who you are and and learn about your ADHD and love your ADHD, you know, and if you've got kitties out there with ADHD and they're struggling to teach them about ADHD because they don't know, they don't understand why they feel more than other children feel, you know. And if you tell them that, they might understand, you know. ADHD kids are they get bullied more, but they feel more from that bullying, you know. So that kid is hurting at home for from being bullied. It's not the same as a neurotypical kid hurting. But you could explain that to your child. You have got ADHD, so therefore these unkind words are gonna hurt you more, you know? And it's just I I say it all over and over again, knowledge is power, knowledge is power, you know. Learn as much as you can and then go into the world. Don't, you know, you you have to understand that even if you don't know that if you've got ADHD or your your child has, it's just it's all about just learning and being at one with each other, isn't it? And it's talking and questions and I mean it's even um, you know, this thing about teachers and oh, but you know, how are they gonna teach my child when they've got to deal with that ADHD brat over there? You know, it's you you hear it all the time. You hear it, and I s I mean, even when I'm running stands, I get people coming over going, oh well, don't you know all of these parents are just doing it because their child wants support? I'm like, yeah, of course, you know, they're just hanging off the back of a diagnosis for a year, two years, just because they want their child support, while that child is literally on its knees at school. You know, it's it's just yeah, so I would just say, keep fighting, keep speaking your truth, keep learning, and um, yeah, let's go and get them.

SPEAKER_01 42:03

And that's the thing, isn't it? It's like we are too way too far out of the box to be put back again. The the the the media the and the government and whatever else I'm I I know that you've got got not being political, but this whole thing of shame that seems to be they're trying to put it back on us. We're standing here going, nope, not happening, not getting back in the box.

SPEAKER_00 42:27

Diary of shame. So, you know, throw more at me. I don't care anymore. It lit it's literally it's not for me anymore. It's too late. That the the horse has bolted for me. Do you know what I mean? It's for my kids and my grandkids and our future generations that uh they're the ones that we keep saying, listen to the children. They're telling you that they're not happy, they're not coping in schools, they need support. And if you if you know everybody was talking about, oh, there's so many people on on pip and all of that. If those people were supported, they wouldn't be on pip. You know, if we had work accommodations, they wouldn't be on pip, you know. You you know that uh it's just yeah, it's this it's just that chasing our tails again and again, isn't it? Well, just on that pip thing, you don't get pip for being ADHD. No, no, it's not anything I know I know, and I it's another misnom misnomer, isn't it? It's a misconception, yeah. It's um, you know, you it you it it depends on how you're presenting, etc., all of this, you know. It'll never be just because of ADHD alone, anyway. ADHD might be a factor, but it won't be the thing. Why why is that narrative being pushed out, you know? Why?

SPEAKER_01 43:37

Well, I guess because people benefit from pointing the finger at somebody and it happens to be our turn at the moment. Yeah. But I think you've got a new Prime Minister. Are you hopeful? Well, I'm hopeful. Um, but cautiously hopeful, because y you don't really know. We we need some serious change in um ideology here, particularly in our education system. Um and I think he's got some good ideas, but we will see what we see. It's difficult to know what's gonna happen there. Um yeah, I'm I'm hopeful. Um but cautiously hopeful.

SPEAKER_00 44:17

Yeah, same. I am hopeful. Cautiously hopeful, I think, is the right is the right word. And we've got the new that um the autumn and ADHD reports coming out, isn't it, soon. So that'll be interesting to to go over as well.

SPEAKER_01 44:31

Okay, so we will be into a new season in um next week's is the last one of this season, so I will have you back in season two. We'll have another chat about things, um, and I want to promote what you've got going on in Jersey as much as I can, um, particularly with you having ADHD Europe there, get people and get as many people involved in that as we possibly can, um, because we do all need community and we do need our organisation to be pulling together, which ADHD Europe does. Um, so that's a massive support network. So um, Rachel, thank you so much for coming on today. I hope people have enjoyed listening and um benefit from hearing this stuff. And um if you watch the the documentary um then then great. Do let us know what you think. If you decide not to, and you decide to mark yourself stay safe from the from the documentary, then absolutely fine for that as well. Let's hope it's more balanced than the title suggests. It is a provocative title, but let's just remember the only reason we're getting pushed back is because we're being successful in terms of changing the narrative and reducing the shame around ADHD, and that is the reason we are targeted. Um, and therefore we've got to keep it up, we've got to stick together, keep pushing for the change to be the change, because the cost of not identifying ADHD is significantly higher than the cost of actually identifying it. So um let's keep pushing everybody, and thank you very much, Rachel, for being here, and we'll speak to you soon. Thank you for listening to ADHD Wise Podcast. ADHD Wise exists to help bridge understanding and support for people exploring ADHD in broader neurodiversity. If you would like to know more about us and our services, please visit www.adhdwise.uk. Follow ADHDwise.uk on Facebook, Instagram, TikTok, and LinkedIn. Take care and we'll see you next time.