The Hidden 20% Final Episode: The Uncomfortable Truth About Neurodiversity

0:00Welcome to The Hidden 20%, our neurodiversity charity on a mission to rewrite the future for people who think differently. Together with you and an eclectic range of brilliant guests, we can break the cycle of silence by smashing outdated stereotypes, exposing the myths and sharing the most up-to-date truths about what it really means to be just different, not deficient. The best way you can help is really simple. Subscribe so you never miss an episode and if you can donate to our charity through the link below. Enough preamble. I'm Ben, your host. Let's get into today's episode.

0:48So today's episode looks a little bit different. And just to clarify, I am not Ben Branson. This is Ben Branson. I am still Ben Branson. You're still Ben Branson. I'm Phoebe DeLaban and I'm the production manager and head producer of The Hidden 20%. And I have to say, Ben, seeing you in the guest chair is slightly melting my producer brain. You're on the left. Firstly, you're in here, which you're not usually. And secondly, I'm on the other side of the room. It's too much change. It's too much change. Yeah, it's different. It's a lot. But for any of our audience who may be listening and also thinking, okay, what's going on?

1:23Can you share a little bit about why we're doing this episode and why I am interviewing you today? Yeah, firstly, it's not because I haven't sat in this chair that, oh, suddenly I want to be interviewed. I think it's for a number of reasons. But the big one is we've done over 120 episodes, 250 God knows how many hours that I've sat in that chair. and we've talked to the most incredible people and we've heard the most amazing stories, evidence, expertise and it has felt like this huge listening project basically. Huge learning curve if I think about what I knew about lots of things before that first episode versus now.

2:08Yeah, I think we've learned a lot and I guess we're now looking at what we do next as a charity and I guess today is an element of reflection of how far we've come and what we have learned and then a bit of a line in the sand for what's coming. Exciting. So much mystery. I love it. So I want to go right back to the very start. So I've been on board with Hidden 20 since January of 2025, but it started way before that. Can you take us right back to what the original idea was behind the Hidden 20 % and why? Yeah, so I'm 43. I was diagnosed autistic first at 39 and then six months later ADHD. And I guess understanding this about myself meant I suddenly wanted to know everything about it and how I'd missed all this stuff, how I'd never heard the word neurodiversity before, how I just didn't know anything.

3:09And I guess how my beliefs were so limited and ignorant. And so I think, as is common with kind of lots of things that I do, I started with research and I started with trying to learn. And obviously, I learned these two extremes, one being how dreadful the statistics and outcomes and adversity is for neurodivergent people. That was the one big, like alarming one that I could absolutely see my life in those numbers and in those statistics. So that was one. And then at the other end, I could see all these amazing skills and contributions and public figures, people I'd looked up to, heroes, idols, amazing kind of contributors to the world in which we live in across hundreds of years of history.

4:03and all kinds of different fields, industries and disciplines. And I was holding these two things, like these two extremes and kind of going, this doesn't make sense. And I guess I held those two things in tension and then sort of found the third leg of the stool, as it were, which was how do we change this? And so then I did another piece of kind of research and detective work to look at social change and look at different social movements and campaigns, everything from like the poppy to Jamie's School Dinners, Black Lives Matter, climate, you know, you name it. I was looking at all these different kind of social change models and campaigns and then decoding that of like, how do these ideas travel?

4:58How do perspectives change? And kind of trying to boil that and distill that right down to make it really simple and find the learnings and find the commonalities that maybe could apply to neurodiversity. And so I did. And I found that, you know, if you have a cause and a message that enough people it's personal to, and you have media as a kind of format and a vehicle and a channel, and you have spokespeople, lived experience, real stories, experts, like ideas can travel and change can be made. And why was it so personal to you that something had to be done about it? I think, A, I'm a father. And at that point, Albion River was a couple of years old, a year old.

5:51I was like six or seven. Moss hadn't been born. And being a parent definitely threw a new light on things of next generations, the future, legacy, all that kind of good stuff. So that was sort of partly in my thinking of that next generation coming through and not wanting to see my children or other people's children in these dreadful statistics and kind of could we break the cycle? Could we kind of intervene or stop this? I think that was one. I think there was another which I guess I could understand that Seedlet, my business projects, you know, had come from my brain. Yeah. The destruction had also come from my brain.

6:36Sure. And I wanted a way to learn about that and harness that and understand it. And I guess I've done that sort of live. And instead of having, you know, a hundred and however many conversations privately, I've just had those publicly. And we've shared those. And so I think it was also the fact that I didn't talk about any of this growing up. No one was talking to me about it. I certainly in all the therapy, et cetera, that I've had, it's never, ever been mentioned. And so I feel like it was another thing where we weren't talking about it. It was a conversation that we weren't having, that we needed to have, and that we needed it to be okay to talk about.

7:28So, yeah, I guess multi, like lots of different reasons. but I guess common to my drinks projects and to Hidden is this idea around you know inclusion people being able to have choice be themselves and then enough level of anger or frustration at the status quo yes yeah of like why can't people have just great drinks full stop regardless to the alcohol content and why can't people kind of understand their brains and celebrate those and be themselves yeah and did you ever expect it to get to the point that it's got to now or to become what it is now the podcast no i can flip between like really lofty deluded ambitions yeah and you know super high expectations to yeah oh this is never going to work and i mean the the first test really was can we get any guests like if we if no one says yes yeah then we haven't got anything yeah yeah and yeah to start with you know carrie grant and kit harrington like and and adele that was a pretty big moment yeah but they were all a series of moments of like tile yard going yeah we'd love to have you as a client our studios our studio pearl fisher who did the branding yeah we'd love to support this all those little moments i guess are all which we're going through now of another set of moments where people believe you and want to be part of it and want to support and want to help.

9:10So yeah, I didn't, no, I didn't have any, I guess my expectations are around I want things to change. Yes. I just want to feel like there's momentum and there is a shift and there is a change and that I'm doing the right thing. More so than how many guests are we going to have or how big a community or anything like that. Yeah, really understand that. And what do you think has surprised you most being sat in this chair over the last two years? Probably the fact that people come and spend two and a half hours, three hours sitting in a chair, having a conversation, having a chat about a subject like neurodiversity or about their brain or their expertise and are willing to do that.

9:55I think that's a really important thing. Like we can't do it, we haven't been able to do it without our guests. Yeah. That's a huge thing. They've got to bring themselves. That's been, yeah, really heartening. like really great and to have such a broad range of people, expertise, topics, people from all walks of life, people with like super neuroimaging and neuroscientists and neuropsychopharmacologists, like super amazing brains to people who don't know a lot about neurodiversity or who may not even be diagnosed. You know, I think that's been the beauty that we've had this huge cross-section of people.

10:40Were you ever fearful that it wouldn't work? Were you ever fearful of, oh my God, is anyone going to turn up? Yeah, I was. And, you know, I'd never done the interviewing before. I had no idea what even happens to make a podcast. I'd never made a digital product before. I'd always and continue I guess to make real physical things that people can consume and so yeah I was blown away by like the power of a digital product that can be listened to instantly in most countries you know the world like the reach is insane is wild how that can happen I don't know I think I just kept going I guess and every conversation on every guest you know either led to more questions in a good way or people then back in touch with us recommending guests or sharing their stories with us and I guess it's just been this yeah it's wonderful snowball yeah and I I sort of feel like I've just been along for the ride yeah I mean snowball is the word it's mad what reach we've had speaking of which I've got some stats for you hit us with some numbers I know you love your stats I do over the last two years The Hidden 20%.

11:57We have had 250 million social media views, 1.7 million YouTube episode views, 2.6 million total episode views and plays, a quarter of a million social media followers across all platforms, 534 ,000 Apple plays, 365 ,000 Spotify plays, and last but not least, two British Podcast Awards. Thank you very much. When you hear those stats back then, what does that make you feel? Sadly, it makes me think it's not enough. That's so interesting. Let's unpick that. Why? That's what goes through my head. It's not enough. And while they sound like really big numbers, I've got nothing to compare it to. But I can't place that.

12:46I don't have any point of comparison to that. I mean, it's everything. I'm so proud of that I'm so proud of the kind of community that we've built and the people that we hear from and the calibre of guests and our production standards and like super proud of all of it but even after that I still get to it's not enough because I still can then go but there's 750 ,000 people on wait lists for just autism and ADHD and have we changed anything? I know because people have told us we've changed some people's lives and we've changed some marriages and like absolutely I know that what we're doing has had an impact on people but I'm also super aware that not everyone listens to podcasts and not everyone watches conversations on YouTube and not everybody wants to you know watch reels on Instagram and there are still so many people that you know children young people who are not on social media for example or people who are hidden and can't access this or don't even know where to look or where to find it.

13:51So yeah, it's sort of a balance of pride with dissatisfaction. I think that's very neurodivergent of you. I think it can be both. Two truths can exist at the same time. Yeah, we can be really proud of what we've done and we can be dissatisfied. And aware of how far we have to go. Correct. Totally. So if I could ask you to give me one standout memory from the green chair, what would it be and why? You know, I haven't cried much, right? But I am the host. You are. Not today, but you are. Yeah, I mean, it's my wife. You know, the two episodes that we've done with Sam. And yeah, I think they were really standout episodes.

14:36They're obviously really personal. But I think the feedback that we've had and the people that have written in and the comments, yeah, they were big episodes. I mean, I've had loads of favorite kind of moments with loads of guests. But probably the hardest stroke, most powerful stroke, most vulnerable, definitely both with Sam. Yeah. I mean, they were phenomenal episodes and you were so beautifully open, vulnerable, honest, both of you from very different perspectives. When you look back on that and you feel that vulnerability and you look at it and you have it as sort of now online as a memory, how does it make you feel knowing that, I mean, you've had emails saying that you've saved marriages.

15:23that's no small feat like that's huge that's someone's life that you've altered and someone's entire being and relationship how does that feel when you have those huge messages and you know that that particular memory that was so raw for you and sam in the moment has actually genuinely changed someone's life how yeah i i don't know i kind of i don't want to sound i don't want to sound like ungrateful or i don't know unappreciative i probably just feel more like yeah but it's not enough there's still more that we need to do when will it be enough do you ever think it will be enough i think that's common though that kind of when is it enough is probably true for like my life yeah like when will it be enough i don't know because there's sort of a destination but there isn't a destination like i'm just chasing impact and change momentum and growth I don't know whether that's to get somewhere or not but I just I'm so impatient you never that I just like I don't I want to do this five years I don't want hidden to be around forever I wanted us to get in make a big impact and then be redundant this is actually what you said to me in my interview which was one of the reasons why i loved it so much and i thought wow i want to work for this person but you were so honest i said where do you see the hidden 20 in five years time you said i want to close it i want to close the charity which you know some people might think are you mad like working for something for five years that you know might end and will end but it's exactly what you said impact change and thinking about how many lives were changing.

17:11Yeah. To me far outweighs anything else. Yeah. And I'm wondering what was a conversation that you had in these seats that changed how you see and view neurodiversity? God, I mean, there are so many topics that we've covered and therefore and then opportunities to like reframe or learn. I mean, even like if I think about the sleep episode we did with Norena, I find that leading up to a guest there's obviously that period of research so there's an opportunity I think at a few moments along the way that's not just about sitting in the seat it's kind of guest selection and get and like who do we think would be great in the chair what topics should we be talking about then there's a moment of like okay we're either doing a research call or we're doing a briefing call where you start to learn about I don't know focus on sleep and the ins and the outs of sleep and neurodiversity and okay some of that you take in personally of like okay what about my sleep and phones in the room and but then also kind of I don't know gets you in the mindset of right this is a big topic let's get into it Louise Newsome menopause that episode you know I am father to three daughters my wife Sam like menopause is is absolutely relevant for me as a father and a husband as much as it's not going to happen for me right yeah and so those sorts of episodes have been absolute gifts and then not that I don't like talking to people about their lives I do but I definitely have gravitated towards the experts you know yeah no small talk straight to the point yeah I and so those big topics of I don't know sleep menopause neuroscience research into nature and autism or just like why are lots of comedians neurodivergent like Let's understand that from a humor, like what's going on there?

19:20I'm literally scanning through the kind of like filofax of like 120 conversations. Yeah. And just thinking through how much we've covered, like learning about things I had no idea about, like dyspraxia. Yeah. Being able to start having the conversation about dyspraxia, even just learning more about dyslexia, for example, this thing that you kind of hear about in school and we heard about growing up. Yeah, yeah, yeah. Yeah, so much. so so much and I think we we've kind of struck a really good balance hopefully of it not being and here's another conversation and it's the same thing and here's another conversation it's the same thing yeah because I think yeah it's all so individual it really is and I'm also wondering And what guest or moment made you realise how big this actually is in terms of neurodiversity and what we still have to do?

20:17I mean, any conversation with Dr. Tony Lloyd does that. It's those Amanda, Nancy, Tony, Frankie Happe. Yeah, I tell you what it is. it's those conversations with people who've been in this space for decades, who can chart the journey of understanding, who can chart the shift in perspective, who can remember when ADHD was just, you know, white young boys who were hyperactive, who can remember when we didn't even talk about any of this in the sense of adults yes yeah yeah or women yeah and who've been through that yeah that's where i've sort of felt some of the enormity of this yeah from a societal as tony talks about paradigm shift perspective yeah so those conversations with people who've been in this space for a very long time have felt a real privilege because they are people who are still there they are still committed passionate fighting speaking up and you know i'm highly conscious that we've been in this space five minutes right yeah totally totally we're babies we are we've got the most incredible community ben of listeners and viewers and i want to pause right now to take a moment to celebrate them and celebrate our amazing audience.

21:53And I want to read our top three comments of feedback that we've ever had on The Hidden 20 % back to you. Here's the first one. Your podcast gave me the power to go and get my ADHD and ASD assessments, which have of course changed my life. I am grateful to you for that. Second one. I can't put into words how empowered I feel having your podcast to reflect on. It keeps me going. Knowing my beautiful, kind, capable children get to grow up with role models like the people you showcase sets my heart at ease. Thank you. Third one. I am booking a GP appointment tomorrow. I have slowly been coming to terms that I highly resonate as an undiagnosed or ADHD adult.

22:39Now watching this today as I struggle to sleep I am that grateful person that finally feels seen thanks for taking the time to put this out there for me to find when you hear those comments back what does it make you realize about what we've built I'm just so glad that like a conversation can mean so much to somebody else yeah that someone takes action from it yeah like there's one thing isn't there to kind of feel something or learn something. There's another that is like to actually do something because of it. Yes. I think that's mega powerful and that's what media can do. It's not just shifting a perspective or providing education.

23:26It is actually an action that is changing something. Yeah. So that's really cool. I mean, it's amazing that people say thank you, right? and we get thank you a lot, which is nice to hear because we're in this sort of lonely studio and it's early starts and it's late nights and it's long hours and it's difficult conversations and it's a lot and we don't want to get it wrong or we don't want to say the wrong thing. You know, we put a lot into this as a team. And so having that be validated and people saying thank you as a first step is great because you want to know what you're doing is actually relevant hugely otherwise it's a waste of time yeah and the fact that it's yeah changing stuff for people or helping people happy days it's so inspiring when you get those comments through and that's just three like you know over the course of the two years we've had thousands of emails and comments on all our videos and on all of our audio and i think there is so much to be said for the neurodivergent community as a whole.

24:34We're resilient people. We want change. And so many people that write into us are saying thank you because they've finally realised themselves, which, as you say, is just so extraordinary. And the fact we get to do that as our workday is just brilliant. I want to shift slightly now into the uncomfortable truth. At what point did you realise that this was way bigger than just a podcast? I think before the charity launched, and as part of that initial kind of piece of research And, you know, the picture that comes to my mind is this deck I put together that was trying to sort of articulate all of what I'd found.

25:09Yeah. And these two extremes. That really felt like I had real clarity and a lot of purity and naivety. And then we launched and you kind of not get on the hamster wheel, but we're in this zone of like more guests, more episodes, releases, got to release weekly. oh people are now guests are going on holiday oh we need to cover for that how many have we got in the bank oh that guest couldn't make it or needs to reschedule oh what about christmas time you know like we're in that zone yeah yeah and not that i felt like we lost sight of what we're doing but i do think we started playing it safe i think we got comfortable or not complacent but i think we got into a routine and we got into a rhythm yeah a system and a system and we knew what we were doing yeah we know where we're coming we know yeah we knew what we were doing yeah but i had this yeah this niggle last summer this niggle that like where's this going is this enough i feel like we're missing something you know making a podcast not cheap you know we were having conversations as a team about you know sponsors yeah yeah we commercialize it and that never felt right and so we decided not to do that yeah we weren't kind of going to go and interrupt our audience and put lots of adverts in and we already get distracted enough we don't need more distraction yeah and then you know i was thinking obviously about fundraising as a charity and then sort of yeah starting to i guess get you guys involved on like where next and what actually have we learned And what are we seeing and what needs to happen both so that we can do our work as a charity and that we can do our best for neurodivergent people.

27:06So, yeah, whilst I say that I'm really impulsive and really impatient, when it comes to strategy, I am definitely not impatient and I'm not impulsive. And so, yeah, by the time this comes out, it'll have been at least 12 months of thinking this stuff through. Yeah, yeah, yeah. Like where do we go next as a charity and what do we think our role is as a charity in this space? Yeah, which is really interesting. And I'd like to ask you that as the next sort of segment of what is the Hidden 20 % becoming? Who are we going to become? Well, firstly, we might be changing our name. Do you want to share a little bit about that then?

27:45Yeah, so the 20%, the name, our name comes from the fact that it's believed that 15 to 20 % of people are neurodivergent. And I thought that that group of people were incredibly marginalized and hidden and, you know, in the shadows and suppressed. We weren't talking about it or seeing it and wanted to shine a light on it. And then I've looked into where that number comes from. And that 15, 20 % figure has never been checked, has never been tested, has never been studied, has never been modeled and has been accepted as fact since 2020. And even that dates back to sort of 20 years ago and a specific diagram in the back of a dyspraxia self-help book's appendix.

28:35And so a sentence in a review paper in 2020 has then become fact. Nobody's checked. And we've checked. And there are more people. There are more of us than 15 to 20%. And so we've been doing some work with Professor Amanda Kirby on interrogating that, on modeling that, and posing the argument that actually there are more of us and that we haven't checked. and we've therefore designed systems, support pathways, funding, policies, perception and public belief around a much smaller number than it actually is. And so there's more coming on this. But I think it is incorrect that we are called the hidden 20%.

29:26Agreed. And that we don't need a percentage on our name. and that actually we will be dropping the 20%. You heard it here first. You heard it here first because it's not true. So what does that then look like for us moving forward as a charity? What are we going to be focusing on? The main voice that we've had is this podcast. Is this closing completely? Is this moving in a new direction? What, for our audience, can you explain what that looks like? I can try.

29:58so i think we have been very focused on the product as it were on the podcast and the podcast being the output and i think we are moving towards instead of oh we're the hidden 20 percent and we're a neurodiversity charity that makes a podcast we're moving to we're the hidden and we're a research and campaign organization making neurodiversity impossible to ignore and that sounds nuancy and a little bit abstract but it's actually the kind of new clothes that we're putting on whereby the podcast will not be the thing that we're publishing on a weekly basis the podcast is a tool that we can use to have conversations with amazing people about topics that our audience and other people need to hear or could listen to and so it's a slightly woolly answer to kind of go we're not stopping the podcast but we are stopping the podcast it's a incredibly valuable media channel for us we know how to do it we've won some nice awards for it we've got some big numbers we've got some amazing guests it is a skill that we have and we can do but does that mean we have to do it every week 52 weeks of the year as we have done for now over two years no it doesn't we are a tiny team and it's not cheap to do right and so it's going to play a role but not the role we did our first piece of research before christmas which was a study on over 150 studies about neurodiversity and neurodivergent conditions, working with a specialist AI agency to kind of map and synthesize and analyze everything that's already been done, which was super fascinating.

31:56We're now currently in our second piece of research at the moment, which is a nationally representative baseline perception study. Effectively kind of seeing what the public thinks about neurodiversity in really simple terms. study that we haven't kind of found anyone else has done and then we are in discussion with governments and wanting to work with them on making some changes and then we are going to be launching a campaign in the autumn. Why do you think the UK needs something like the campaign that we're about to embark upon? Good question so historically and currently the world of neurodiversity, I think, is three things.

32:42Number one, it's incredibly siloed. It's a little bit like whack-a-mole, it seems, out there. We have all of the conditions are very separate, boxed, and siloed. And we've got loads of amazing people within those boxes and silos who are advocating, shouting wanting to change stuff and it's all aiming at could be government could be health care could be justice could be employment could be education but it's coming from all directions like daggers being thrown and so we've got lots happening in dyslexia tourette's dyspraxia autism adhd you know it's all coming all at once that's also playing out in terms of of funding, research, assessment pathways.

33:35You know, we've got people sitting on multiple waiting lists. We've got people going for multiple assessments. We've got lots of amazing organizations in this space, but again, they are in the specialist sort of silos. Yeah. And yet, and I've done this work because I've analyzed and looked at the visions, missions, and values of all the neurodiversity charities. and they all say the same thing. We are all saying the same thing. We all want the same thing. We are just replacing autism with dyslexia, with Tourette's, with dyspraxia, with dysgraphia, etc. So I think we would do really well, as mental health did, when things like depression and anxiety came together, to come together under this banner of neurodiversity, number one.

34:25So that is let's sort of break down the silos and not replace all the individual parts because they're all absolutely valid, absolutely relevant, absolutely needed. But in order to make big changes with big systems, we need some singularity and simplicity and focus. So breaking down the silos is also reflective of the fact that co-occurrence, i.e. somebody being ADHD and dyslexic or me being autistic and ADHD, is now been proven to be the norm and not the exception. And therefore, these boxes are not so rigid. And these boxes then don't really work in practice when you are being looked at through singular lenses of these labels.

35:23That's not person-centered. That's not needs-led. that is literally putting these diagnostic gates in that is preventing people or costing people a lot more money which brings me on to the kind of second thing which is around the costs and you know ADHD and autism alone are costing the government nearly 50 billion pounds a year so there's an element of can we be a bit more connected and cohesive can we actually look at this when you do that adding it all up and looking at it from a wow when you put all this together and it's not one percent of people are autistic and half a percent over here and two percent over there and actually add it up and kind of go there's a lot more people than we thought and we haven't interrogated the kind of how many people we're talking about we've boxed everybody off and made this whole thing wildly inefficient and hugely costly.

36:25And what would happen if we actually looked at this from a system design perspective? I strongly believe we could save lives, money, etc. And then thirdly, I'm not sure we have fully acknowledged the outcomes when you package them all up for neurodivergent people. I'm not sure we fully join the dots across all these different systems of the fact that neurodivergent people over-index on the worst of it, on the worst things in life. Yeah. You know, we quote unquote win. Yeah. everything throughout people's lives so everything from like bullying exclusion and mental health in childhood for example or trauma through to addiction unemployment divorce uh homelessness jail right through to like life expectancy you know being much shorter Yeah.

37:27So when you step back and you look at this all from a how many people, how much wasted money, how much cost is in this and what are the outcomes for this group of people like, like how are they getting on in life? It paints a really sad picture. Yeah. It paints a really big picture when you're talking of like north of 20 million people in the UK. And you're talking about big numbers of billions of pounds that could be saved. And you're talking about dreadful adversity and dreadful outcomes. Yeah, they add up to being, as Simon Gunning from Khan would say, big holy shit numbers. Yeah, quite. When you remove all of these minority silos and all these little fractions, all these little niches, and you kind of go, we are people and we can be all these different things, but we are actually all wanting the same thing.

38:31And we are more similar than we might imagine. Yeah. There are just these different labels. I think it adds up to being something that can't be ignored. What, Ben, do you think is wrong with how we currently understand neurodiversity as a nation? One temperature check is the media narrative. And the media narrative recently has been all around overdiagnosis or sort of eye rolls or trendy or, you know, don't take Tylenol. Just jumping on the bandwagon. Yeah, bandwagon, which ultimately has been to say, we don't take this seriously. And you then get the, well, it wasn't like this in my day and etc.

39:17And so actually, the media headline is just so unhelpful and so dismissive and creates a lot of harm, actually, because we adopt a lot of our beliefs about society and people. without realizing it from the media. They have a huge amount of power. And we also now, we have a base in between. I grew up with TV and billboards and radio and magazines and newspapers. And so it was a, oh, what we see on TV and in billboards and in magazines is going to influence our beliefs. Now, we still have all those channels, but we have a layer in between, which is called social media. We have a layer in between that is in our pockets, in our hands, freely accessible, and you can be exposed to it sat in a dark room with no windows.

40:20It's not, oh, I'm going out to the supermarket and there's the billboards. It's not four or five channels on a TV that I have to turn on. And it's not maybe I'm listening to the radio or I have to buy a magazine. This is like with us all the time. Bombarding. Non-stop. Yeah. And so that throws another like lens of, okay, if the media headline, the big media headlines are unhelpful and poor and out of date and that then carries into social media and those narratives and headlines. Yeah. That kind of adds up to being quite dangerous. and ultimately dismissive and minimizing. I think they're probably the, we're not taking this seriously, trivialized piece.

41:13Because I can't, so what if there's more of us? Exactly. What is the problem with that? And also what is the problem with that when that is a fact? Like you can't get away from it. Yeah. You know? Yeah, yeah, yeah. I loved what our guest said earlier about the zebra and the horse that actually I'm just a zebra. I'm not a weird looking horse. And it's just so true. That is the issue. And the other one, Kristen shared that like now we've got a telescope. Yes. You know, like the stars have always been there. Yeah, we're just seeing them. Yeah. You know? But one thing I've learned about this community is that we no longer will be silenced.

41:55and I think once you have that moment or that diagnosis or that validation or that awareness that you're not alone you're not broken there's nothing actually wrong with you and you've got an explanation that's so empowering and galvanizing that people then speak up yeah And they don't shut up, right? And so if you imagine that a key hallmark of neurodivergence is moral justice, then that bodes incredibly well, I think, for this movement that we're not going to lie down and not going to be quiet. And therefore, I feel really hopeful that the media narrative will turn, that it will shift. And I guess in some ways, if less people want to engage with those kinds of headlines, if less people click on those articles, then they're going to have to change tact and find a different way.

43:00And that's part of our autumn campaign is around finding and sharing the truth. Yes. Yeah. and reimagining what that media narrative could and should be. And we've got a lot of work to do to do that, which leads me nicely onto our lovely team. So people see you, Ben, as the front face of the charity, the founder, the front person doing the interviews, which you absolutely are, and you're amazing at it. As you've said, in lots of different episodes, there's many, many different people that make this charity what it is. It's never been a one-man band. And it's taken many, many brains thinking differently to get us to this point.

43:40Could you just share a little bit about who is behind the scenes doing that work together and what their role is? Yeah. So I think the first thing to say is we are a tiny team. We are. Can confirm. So there are three full time people on the charity. And they are Phoebe. Charlie, who is sat in the control room right now, who has been with me since the very beginning and who runs all our amazing social. And then we have Kristen, who is our head of marketing. She's not in the studio today, actually. But yeah, she's got a wonderful brain. And I will say everybody's neurodivergent. I'm not going to reveal people's diagnoses.

44:28That's up to them. but we are a neurodivergent team and that has just made it very personal. It really has. And I think I could speak for us all to say we've all learned a lot. We have, yeah. And like we're just super committed to what we're doing. Yeah, we're super committed and that level of passion and commitment, I think we just, we all want to do our best. we all want to do the right thing yeah and it's personal and professional I love it most when you guys talk about how grateful you are for what we're doing and that's not because that's about me that's because that's about what we are doing within this space that just feels like meaningful work it is I think reading the comments and seeing how we're changing people's lives far outside of the podcast that are viewing it but also having our own experience individually we're all neurodivergent as you said your lovely girl river has been diagnosed with autism which you've shared on here publicly my wife's been diagnosed with autism and adhd purely because i worked here yeah would never have known yeah and that has changed my life it's changed all of our internal lives as well as external kristen she won't mind me sharing has been diagnosed and also her children on Married A Virgin and again she was a massive fan before she came on board with The Hidden 20 and it's just so amazing the impact that we have had on our personal life as well as extended family of people that we get to share these conversations with is huge and it's true we are all so deeply grateful for that every day and I think that's why we work so well as a team because that running linear line of connection never ever ever can be broken because it's so deeply connected to all of us individually and we just want the same thing right yeah and that you know I think you know we don't work in an office we are a remote team that has its own challenges of being remote yeah sure yeah the fact that we can do what we do as a remote team as a neurodivergent team I think is really cool and bodes really well in terms of foundations for then what we're coming up to be doing and what we're doing next yeah because we are building that quite core team where we've worked together now for long enough that it feels like a really good foundation to build on but yeah we are very small, I mean shout out to James Scriven yes, we was just about to say that James Scriven, amazing editor, he's been with us since the beginning John on sound, I mean mixing all of our episodes again been with us since the beginning tyx tyard where we record our episodes again been with us since the beginning there are lots of people who dip in yeah yeah yeah who help make it so but yeah it's a full-time team of three people which is great and shows you what's possible with a small team yeah and a neurodivergent team so i want to ask you three questions about things that you've learned from doing this podcast.

47:44First one, what have you learned about neurodiversity that you didn't know at the start of this journey? Everything. I think the big bit of clarity I've got is how, for the most part, this actually is a social and identity movement and not an academic and clinical crisis or topic. I think that's the one that's been like really dawning on me of how lots of these social movements historically, gender, race, sexuality, disability, lots of these areas all started as medical things. Yeah. As like scientific, medical, academic, you know, anomalies or weird things or strange, not the norms. Yeah. Mental health is another one.

48:50All of them have moved towards more societal, like, identity and away from medical, clinical academia. Yeah. and I think neurodiversity is next and yeah I think that's probably like my one big thing that I've learned by doing this yeah or absorbed maybe by doing this and so much of that speaks to like there is nothing wrong with me and you know I do not have a disease no we're not deficient no I don't need to go and see a doctor yeah but that's what's taken the majority of the conversation You know, treatment, symptoms, diagnosis, all this sort of stuff. And I think we would do really, really well to look at the precedents and, as Isaac Newton would say, stand on the shoulders of giants.

49:50Because there's so much we can learn from mental health. There's so much we can learn from race, sexuality, like these movements. There is so much we can learn. We can do this. like we know how to do this we know actually how to include people yeah we know how to change systems we know how to change perspectives we know we're like we know how to do this we've done it before and that's the ask but when it's all these seemingly disparate things like dyslexia and dyscalculia and tourette's and all these different and and it's pathologized and it's all medical and and expert and academic and language that people don't want to use.

50:35People don't want to say the wrong thing. Yeah, yeah, yeah. It will stay there if we do not rise it above and talk about neurodiversity in the same way as we talk about mental health, for example. They're not the same, but just in terms of how far we've come. Yeah. Yeah, so I think that's been the biggest takeaway, way the biggest output of just being able to absorb so much from listening to people and what have you learned about neurodivergent people that we have been so unbelievably hidden yeah yeah that i think common to lots of the people sat here as guests lots of people that we hear from from our community and especially for late diagnosed people is kind of this feeling that everybody has thought they were the only one and everybody has thought they were really alone and everyone has kind of thought it needs to be a certain way so true and actually it's like seeing millions of people smiling fighting their own battles internally but everybody looks okay on the outside yes yeah yeah yeah yeah and kind of you know checks in with each other you're right yeah yeah yeah right yeah yeah what does that even mean yeah and suddenly you kind of don't have to do that or you realise there's another way or there might be another way yeah I've learnt that lots of parents are in our community and you know parents will do anything for their kids full stop but parents fighting for or advocating for neurodivergent children that's a whole other level and we shouldn't need to be so but but is so yeah i've learned we are a a community that's not been heard a community that's not felt seen a community that's not felt included a community that's been many many many individuals fighting their own individual battles a community that's thought that they had to do this all alone a community that has asked like lots of questions of themselves and not had the answers a community that is so ready to get stuck in to want to help the amount of people that we hear from that are like what can i do how can i help what can i do i've recommended you know you to x y and z but yeah i feel like this community is ready for action and change yeah yeah final question on this round what have you learned about systems i've learned that the systems that we have for the huge institutions of employment education health and justice are not fit for purpose are not fit for scale and were systems that were then and played their part then and had their role then and scaled things then.

53:48But they are not systems that are relevant, right-sized and meaningful now. And unfortunately, you know, and this is again where lots of things can be true at the same time, those systems were able to scale because they called for uniformity and conformity and they called for kind of people to fall in in line and be the same and that worked for a while and obviously when things are the same you can make lots of them quickly more cheaply yeah it's like a factory yeah when things are individual that becomes harder but you only have to look as far as things like curbs being dropped and universal design principles to kind of go actually there can be win-wins and there can be systems that can account for individuals and for difference that can happen at scale somebody does not need eight different assessments to understand their brain exactly they do not need to spend all of that money neither does the nhs neither does government and neither does that person looking for an assessment you know adam dance's neurodiversity screening bill that is within the houses of parliament at the moment and this is not trying to minimize things.

55:22I'm not trying to kind of say that you don't need experts and things shouldn't be thorough. And this is not a TikTok five-minute test, right? And it's not to downplay anything. It's not to minimize anything. But it is so incredibly inefficient. And I'm not a system expert, but you can just see how inefficient this is. We know the waitlist numbers on the NHS and we know that that's not working. We know that the NHS is then paying the private sector hundreds of millions of pounds to conduct. Like, it's a real mess. And my theory, being very simplistic on that mess, is that we are in whack-a-mole mode and we are being incredibly reactive and we are one minute fighting one fire and another minute we're being sent to fight another fire and we haven't stopped and we haven't stepped back for one second to approach this strategically and look at it from a system perspective.

56:28I think we've got an amazing opportunity to save lives, save money, get people thriving and understanding themselves and feeling included. Yeah, I mean, it sounds really simple to say, right? And it's sort of easy theory, but I'm confident that some small changes could actually go a long way. So you know what my next question is going to be? No. If you had a magic wand, what would those small changes be? I've got a magic screwdriver over there. Magic screwdriver will do. Still got a squeaky chair there. If I had a magic wand. If you had a magic wand, Ben, what would you do with that magic wand for neurodiversity in the UK?

57:08Appoint a Minister of Neurodiversity. We did it with, I say we, as a government, as a country. We did it in 2018 with the Minister of Suicide Prevention. And it made an amazing impact. And we need some accountability within government. We need some cross-functional institution planning to look at justice, health, education and employment. we need a national neurodiversity strategy and i say that and then i immediately kind of go who the f*** am i to even be saying that kind of stuff you're a person that believes deeply in what they're doing and i think that's enough but i would like someone to tell me why that isn't a good idea right why that isn't a it's not the solution but it is we haven't tried it Yeah.

58:07And it's that classic, you know, if we keep doing the same thing, expecting different results, we have to do something different. And I really believe that having some accountability, getting a cross plan of these different systems and creating a national neurodiversity strategy. And we can argue like, okay, but what comes under the definition of neurodivergence? We can argue all the details and what about this and what about the DSM and what about changing the criteria and what about the assessment process? And we can argue all of the things that we've been arguing about and all of the detail.

58:49But I think strategically we've got to start at the top in terms of a focal point, someone accountable within government to work with government. Nobody's to blame here. I think that's really important. I personally don't feel angry with anybody. I don't think it's anybody's fault that we are in this position. I just think we are playing catch up. and you know it's important context that we couldn't diagnose adults with ADHD until 2008 and you couldn't be diagnosed autistic in ADHD until 2013 and you know they are important contextual pieces and the neurodiversity movement whilst kind of kicked off and coined the 90s yeah we know because we saw in our research that really TikTok and COVID have been catalysts Hugely.

59:46For this quote-unquote explosion in interest and awareness. And so it's not even 10 years old. Yeah, it's very, very new. It's not even 10 years old. And look at how fast this movement has spread in a brilliant way, in an amazingly powerful way. I think if we could just harness it under a banner, for want of a better word, like pride, like mental health, Like if we could just channel it, I think that would simplify things. I think that would make things more effective, more efficient. We would realize that we actually have more in common with neurodivergent people than is different. And maybe we would move out of our dyslexic Tourette's boxes and be able to have at least a foot in, oh, I'm not dyslexic and you are dyslexic.

1:00:43But that's brilliant because we both think differently or we both see the world in a different way. Yeah, yeah, yeah. We need to realise that there is actually one big community here with other separate communities within it. I don't think we fully believe that yet. I hear you. I really hear you. And that's why we need the change. Talking about communities and thinking about our lovely community, there will inevitably be a few people who are feeling really sad that this chapter of the hidden 20 % is coming to a close what would you say to someone who has listened to every single episode and who relies on our voice weekly oh my god I'd say I'd like to meet you and thank you I have listened to every episode weirdly and obviously I've been in every episode not that weird i would say thank you i would also say we're not actually going anywhere so if you if you only know us through apple or spotify then a maybe you haven't watched any of our episodes so there's a whole load of stuff to watch on youtube follow us on social and come and get involved in what we're doing on you know instagram and facebook and tiktok linkedin yeah come and kind of check us out and get involved there we're not going away it's a moment of pause and reflection probably of us being able to step off the you know two year hundred and god knows how many episode kind of podcast bus i guess that we've been on so we're sort of we're not stopping but we're just going to not release an episode every week changing tact yeah and i think having a moment to kind of step back see what we do with it bring it back or in a different way yeah i think changes can be really positive and really healthy and i don't want us to rest on our laurels i want us challenged i want us slightly out of our comfort zone i want us trying stuff you know trying stuff and seeing if that works and testing the edges and and maybe a little bit more out there yeah Yeah.

1:02:55I love that. I love that. And what do we need from our audience now as we move into our next chapter? What role do they play in what comes next? We need probably for you to keep doing exactly what you are doing, which is getting good information, hearing from great people and great stories and spreading the word and speaking up and doing your homework and maybe being a bit kinder to yourself and developing hopefully a really positive and healthy relationship with your brain. That's one thing. Keep an eye on our news. Our newsletter. Sign up to our newsletter. Sign up to our newsletter. Through our website.

1:03:38Because that is going to be a really good place to understand what is coming and what's going on. Write to your local MP and write to them about neurodiversity and what's happening. Yeah, follow us on social. And I guess just stay tuned. Stay tuned. Stay tuned. That's the thing I wanted to say here today is I want to be really clear with Ben. This is not goodbye, right? This is just a line in the sand, a celebration for all that we've achieved so far. And a thank you to our audience. And as this chapter comes to a little bit of a close and a pause, it's also a rallying cry for you to join us in our next chapter and get on board, get that newsletter so that you know where we're going to be and how you can help because we're going to need a lot of help.

1:04:24Yeah. We've got a big mission. Yeah, we've done all this work. You guys listening and watching have done all this work too. And we now want to put that to good use and make the most of it. And so, yeah, please don't go anywhere. Although all we're not doing is we are not going to be releasing a weekly episode. So that is the thing that is changing in its simplest form. Yeah, please just sign up to the newsletter and then you can keep up to date. And there's a lot of work we need to do. So we need your help. We do, we do. So this may be the one and only time you'll ever get asked this question, Ben.

1:05:00And you've asked it over a hundred times sitting in this very seat. So last question. I'm wearing a green dot badge. Me too. You're wearing a green dot badge. They're our symbol of neurodiversity awareness and we sell them on our website too for the price of one. We do. To support our charity. I have another one for you here that I will give to you afterwards. who would you like to give your green dot badge to then let me explain to you who i'm not giving it to and why i'm not giving it to people i've already given one to yeah right so i'm i'm not giving one sam i'm not giving one to my kids i'm going to give one to the most important person in this whole space in this whole world for the future of neurodiversity in my opinion and that is for the to be appointed minister of neurodiversity love it thank you so much amazing so i've been thinking about how to close this episode then and i've had so many thoughts maybe this maybe this and the thing that just kept coming back to me every time that felt the most natural is a message directly to you so i'd like to read it because just my dyspraxic brain mixed with high adrenaline means that I will not remember it word for word.

1:06:19And it might be probably the most formally I've ever spoken to you. And the one time I actually managed not to add a swear word to each sentence. So let's go. Okay. Ben, I started this podcast as an assistant producer. And within seven months, you promoted me to production manager and head producer. But more than that, you found me at a time when I didn't really know where I fit. In my interview for the hidden 20%, you didn't ask me about my CV or my credentials. You asked me about how my brain worked and what I liked about it. That stayed with me. You've built a way of working where difference isn't something to fix or manage.

1:06:57It's something you embrace and nurture. You're the kind of boss who celebrates the fact I problem solve whilst walking through the forest with my dogs, who understands that space, nature and creativity aren't distractions. they're where you find the golden ideas. You don't force small talk because it doesn't exist in our team. You don't force structure where it doesn't fit. You give people the space to think, to breathe and to care deeply about what they're building and because of that we all do. I feel incredibly lucky that I get to spend my days working on something that is changing lives and genuinely matters, that is deeply personal and with a team that finally feels like it fits.

1:07:41So thank you for seeing me and for building something that allows other people to feel seen too. I want to say thank you on behalf of every listener and every guest this podcast has reached. For the people who finally had language for their experience, for the ones who realised they weren't alone, for the ones who felt understood maybe for the first time. This podcast has not just been content, it's been connection. and that's because of what you started with your amazing brain so this isn't just a thank you from me it's a thank you from all of us and now I'm going to need you to cry on cue and I've got Charlie waiting with a tray of onions just in case it's fine if you don't you can just come in and help that along thank you that is amazing to hear hard to hear great to hear yeah you've said it a couple of times Phoebe that this is that line in the sand moment and yeah we've got a lot of work still to do we have and so it is that sort of chest bumps high fives pats on the back moment but then it's kind of on we go and and more to do and I'm super excited about this next chapter as a team and also completely way out my depth, but in a very good, challenged kind of way.

1:09:07And look, none of us are from the charity sector. Nope. Yeah, but we're going to figure this out. We are. And we've done it with this and we're doing it with our community and we'll do it for the next step as well. Yeah, see you soon. See you soon.

1:09:32That's it for today's episode of The Hidden 20%. But just before you go, a favor. The Hidden 20 % is a charity and we do this to bring you the truth, the latest research and the real stories that matter. So if this episode spoke to you, then please hit subscribe. And if you can, donate via the link below. Finally, a big shout out to you all for listening and our brilliant team who make this all happen. Phoebe, Charlie, Kristen, James, John, and the guys at TYX Studios. We'll see you next time.