ADHD Media Narratives & Misinformation: What's Really Happening?

0:00ADHD is not overdiagnosed at all. What they can't deal with is the fact that what you're saying is that the majority of us think differently and that is what the norm is. Yeah. Welcome 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 Together with you and an eclectic range of brilliant guests, we can break the cycle of silence by smashing outdated stereotypes, exposing the myths, and sharing the most up-to-date truths about what it really means to be just different, not deficient.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.

0:50So enough preamble. I'm Ben, your host. Let's get into today's episode.

1:02Dr. Tony Lloyd, third time back here. Yeah. You have been, well, for people listening, watching, we did an amazing episode with Chelsea. Then you came back last September and we had another great sit down. I think you are our second most listened to episode ever, which is pretty good. So hence, let's get you back third time. I just want to go through your thoughts, your perspective on, I guess, the current landscape. We've just had the ADHD task force report come out. There's a whole load of stuff going on with Send. Yeah, just be great to get your thoughts and perspective on where we're at now and then maybe chat about where this is going to lead to in the future.

1:50I mean, I think, Ben, one of the things that's really interesting, isn't it, is that this phenomenon that is the neurodiversity movement, it's a massive cultural shift that is global. So I think that this conversation that's been going on for, I think, over 20 years, but really, really come to the fore in the past 10 years is a phenomenon. You know, Ned Halliwell is somebody I admire greatly as an American psychiatrist who has ADHD himself and said that, you know, neurodiversity is a triumph of lived experience over theory. In other words, despite whatever the theory or the research papers, the academics say about us, guess what?

2:30There's another side to that story. And actually you are looking at us through a lens and a perspective that within medicine is about, well, what's wrong with you? Whereas within a neurodiversity paradigm, it's about, well, what's strong with you? What do you mean by the neurodiversity paradigm? It is a global cultural shift where the general population now has a different perspective and in some respects, different values around how we view a particular community. and historically in our culture, we've kind of often excluded minority groups. The premise has been, well, you're not like us. Yes.

3:18So you don't really belong. In order to deserve something, you have to be like us. And in a global village now where our lives are very different, we belong to multiple social groups, some of them across different time zones, online through different media platforms. the number of relationships that we have with people who are very different from us, who live in different cultures and have different kind of experiences. So you have, I think, in many respects, got certainly a younger generation who are describing this as an age of identity. It's like, well, who am I in this global village as opposed to who am I in the village that I live in?

4:02Yes. And I think it raises a lot of questions about, well, who am I? Where do I belong? because there is something, isn't there, about all of us as a human species that fundamentally needs to be understood and known and accepted and loved by somebody else. And I guess the shift being we can find that belonging with someone on the other side of the world who we've never met in person. But the thing about identity is that our identity is the sum of many different things. It's not just my identity as a member of the golf club or my identity. as a member of the neurodiversity community or whatever it might be.

4:42And identity is inculcated, isn't it, into values because what does that identity stand for and represent? And what I think is wonderful, particularly when you see that 53 % of Gen Z in the UK now identify as neurodivergent, but they don't identify as disabled or disordered. And here's the interesting juxtaposition that within our education system, your class is being learning disabled if you don't learn a certain way and in our medical profession your class is disordered so how can we then square that with the fact that we know that 29 of all entrepreneurs of adhd and it's estimated now that somewhere around 50 of engineers are autistic somewhere around 50 of the legal profession are autistic i've got no idea what the composition of neurodivergence is in Westminster in government.

5:40But from what I can see, there's probably a disproportionate number of people in there, much higher than the general population who are ADHD or autistic dyslexia. I've not come across a single industry yet where I'm lucky I meet all kinds of people, talk to all kinds of people. And two weeks ago, I was at a dinner talking to a man who runs a construction business. Tells me, oh, massively over-indexes in our industry. Yes, we know about musicians, the arts, quote unquote, more creative industries. But legal profession, engineering, tech, government, like we're everywhere. Yeah, and this is the interesting thing, isn't it?

6:30You've gone from being, you know, I mean, the World Health Organization prevalence statistics suggest that at least one in five of us are either ADHD, dyslexia, dyspraxia, autistic, dyscalculia, and they all overlap. And guess what? We're all on a spectrum. This standard distribution curve has got flatter and flatter and flatter. and this notion of normal versus abnormal or neuro-normative or our education system that has been, well, we're going to include you, but we're going to make sure that you have to think and learn and act like somebody to fit a neuro-normative model. That's not inclusion.

7:06We'll adjust things so that you can learn like everyone else. But despite the constant kind of delays in changing how we educate and socialise and inculturate young people, how we optimize people in terms of employment and their career and their citizenship. It's interesting, isn't it? Because all of these people who've always been there, hiding in plain sight, 80 to 90 % never got a diagnosis at school because they didn't fit the stereotype that, you know, when I was at school, which I know was a long time ago, but you know, if you were classed as a special needs kid, you were moved away from everybody else.

7:46It was like, you don't belong here. And that was the message that all the other children in the school got. They're not like you. They don't belong here. And I think what's really inspirational about today's under 35s is they really don't give a damn. Whether you're black, white, Asian, Chinese, gay, straight, trans, dyslexic, autistic, for them, diversity is a given. And that's a very different kind of monoculture to what my generation and a lot of the policymakers that exist in government, their generation, it is very different. So whether or not there is this rebuttals or newspaper headlines about, oh, this is just a trendy thing.

8:31And, you know, there's people are over-diagnosed when politicians and, you know, they know, they know what the data is. ADHD is not overdiagnosed at all. What they can't deal with is the fact that what you're saying is that the majority of us think differently and that is what the norm is. And therefore, well, what do we do about that? Because there's some very long established hierarchies and privilege that are going to be shaken by this idea that your success is determined by how many GCSEs you get or what school you went to or what university you went to well go into you know Oxford and do maths and PPE might make you more eligible to become prime minister but it doesn't mean you're intelligent yeah it just means that you have a certain type of intelligence that historically has been valued, well, guess what?

9:30In a tech-driven, rapidly changing world, a 24-hour, seven-day-a-week culture, never mind economy, then the kind of skills and competencies that we value now are very different. I was talking to the CEO of a bioscience company in San Francisco called Emily LaProuste, who's quite an extraordinary woman, and they are involved in the creation of synthetic DNA. and she was saying we're a decade away from being able to store the entire content of the internet in a suitcase full of synthetic DNA and if you think about the sort of synthesis of AI language models I don't know why we call it artificial intelligence because it's not intelligence is it it's just large data sets but the fusion of that with synthetic biology means that if we think the technological revolution of the past 50 years has been exponential thing people have got no idea what's coming in the next sort of 20 30 years so what we value and need in terms of skills and competencies in terms of our economy but also in terms of our lives and our culture is going to change rapidly yeah but you still have to come back to the fundamental thing that genetic imperative in human beings is relationship driven yeah and the reason that children make decisions based on emotion up until the age of 13 you know I have great faith in the curriculum that is our DNA and how over hundreds of thousands of years we have evolved.

10:58And apparently the most intelligent species on the planet, I say apparently, Ben, and yet when we're born, we are one of the most dependent and helpless species. We can't even walk for the first couple of years, unlike most animals can get up and walk within minutes of being born. Because our brains and our nervous system, our intelligent mind is not even half formed when we're born. What's the incentive though, Tony, of keeping us hidden? What's the incentive of trying to maintain the status quo? It's about determining what we mean by intelligence and therefore what that entitles you to. And I think a lot of people are now asking, well, what does intelligence mean?

11:39Does it mean how many GCSEs you get? Because I know that when I go home every week to my family, The most important thing in our lives, any one of you who are watching this now, the most important thing in your life is your family, your friends, your partner, your children, is relationships. They are the things that are most important. They are the most powerful driver in the human species. And having all the money in the world and all the qualifications in the world means nothing if you are isolated and lonely, because we all know that loneliness is a greater indicator of mortality than smoking is.

12:23We know what happens to children who are never picked up and held. They'll die. And I think one of the reasons why the neurodiversity movement, I think, has been challenging for policymakers and for some established kind of paradigms within our education system is that we say, well, if you have this kind of qualification, you're going to have this amazing career and you're going to earn so much more money. And the subtext is obviously, isn't it, is about economic productivity and viability. Or if you have this kind of way of thinking, then you're going to have more opportunity. But if you don't think like us, we're going to call you disordered and therefore you're less deserving, you're less entitled.

13:05And I think it really is about an obsolete notion of who is entitled, who belongs, and who makes the decision about whether or not I'm going to allow you to achieve your potential and nurture your potential. or whether I'm going to be really selective and say, no, I'm only going to really develop this kind of person because that's who I deem to be more deserving, more like me. And that's a very simplistic way of describing it. But I think fundamentally what we're seeing now in the neurodiversity kind of emerging paradigm is that everybody's standing up and saying, you know what, I'm here and I don't look different to you.

13:52and contrary to what you might have said, I am successful, I am employable, I am an entrepreneur, a lawyer, a decision maker, a policy maker. I am somebody of worth and value. Maybe not quite by your system of measurement, but guess what? If it's at least 20 % of humankind, at least one in five of us, then... Do you think it's more than that? Oh, I do, yeah. And where do you sit on the growing, I guess, narrative of relaxing some of the specifics of what's included within neurodivergence and what's not, i .e. PTSD, bipolar? Okay. I'm a little bit unsure about this because for me, in terms of talk about neurodiversity for the past two decades, it was a perspective of if you dyslexic ADHD, you know, that's part of your genetic inheritance.

14:55Yes. And if there are, out of 8 billion people on this planet, about 1.5 billion of us who have one of these neurotypes, then there's got to be an evolutionary reason why. Yep. That we're not disordered. We're not errors of genetics. We're not disabled inherently. We are disabled by other people's attitudes and other people's exclusion of us. Yep. But for me, bipolar disorder and even things like neurodegenerative problems like Alzheimer's and Parkinson's, they are sicknesses and illnesses that we can treat and cure. Okay. as opposed to characteristics yes that are in my view and the view of many people not disorders or disabilities in the strict sense of the word but a natural expression of the diversity of human neurocognitive potential and ability in the same way that we know when we look at sexual orientation well you're straight or you're deviant to you're straight or you're gay and now actually we recognize that human sexuality and sexual orientation is much more diverse and fluid and individual and individual than we ever realized and that was very challenging for a lot of people you know i mean me and my partner got married as a same-sex couple the first time obviously wasn't legal but when we did there was this huge chewing cry that you know equal marriage rights were somehow going to destroy society.

16:33You just think, how absurd. And this was only 12, 13 years ago in this country. But this idea that, no, you have to be like this. And if you're not like this, there's something wrong with you. And that's what I think the neurodiversity movement is kind of challenging. What I'm concerned about is, because everybody's talking about neurodiversity, and it's not for me to decide. Sure. It's not for me to decide. People can identify how they want. Some people prefer to identify as neurodivergent. Some people prefer to identify as neurodiverse. Some people prefer to identify as having a dyslexic neurotype or autistic neurotype or whatever it might be.

17:12Personally, I just prefer people to call me by my name. But it's an identity, isn't it? Yeah. But is a degenerative illness an identity? Because you weren't necessarily born with it. No. What about PTSD then in terms of traits? and character that overlaps with presenting in a neurodiverse. But you're not born with post-traumatic stress disorder. Again, post-traumatic stress disorder is acquired because of a traumatic event that's happened to you. Acquired brain injury. Is, I think, a legitimate kind of, because what you have then is, we know that approximately 20 % of people with ADHD have acquired ADHD because of brain injury, most commonly through seizures.

18:04So epilepsy, so really high prevalence of people who are epileptic who have ADHD because those seizures have changed the structure and function of their brain. So people with dyslexia, ADHD, autism, we all have brains that are structurally and functionally different from this arbitrary normal brain. Sure. whatever a normal brain is but this is what i was saying before about our evolution as an intelligent species intelligence we're born with potential but the realization of it the flourishing of it is as much to do with environmental factors as it is about genes and that's quite different from the mindset of our culture a hundred years ago where there was this idea well not even a years ago is it that some people are born more intelligent than others and and there's a an element of entitled and eugenics is kind of thinking around this idea that well some people are intellectually superior but the reality is there isn't a single person is there out of eight billion people who've got the same genome nature likes difference we're all different for a reason and some of us have extraordinary talents that other neurotypes don't have and some of us are more vulnerable you know to things like ptsd for example if you have adhd so for me ptsd is a mental health challenge that you can recover from whereas i i think adhd autism dyslexia dyspraxia you cannot cure them and nor should we try to because that's like saying well if you're not this kind of person i'm going to do all kinds of things to you and define you as having medically something wrong with you to justify why i'm going to try and make you fit a neuron normative so let's put this through the lens of sexuality historically yeah and imagine that i'm sitting here going yeah tony i have ptsd and it shows up for me in these different ways and i'm telling you that I identify myself as being neurodiverse.

20:26In the same way that we've had such fluidity and increasing inclusivity, and we know that 53 % of Gen Z are identifying as being neurodiverse, where does the line get drawn between the sort of pathology, medical kind of box-ticking siloed side. Really important question, Ben. And then the cultural social identity of, I think differently. I'm not kind of subscribing to the norm. Being different doesn't make you ill. Yes. And there is a difference, I think, again, between experiencing some kind of mental health challenge. So as somebody who's lived with ADHD, All this life, I identify as neurodiverse, not neurodivergent.

21:18I also have PTSD. That doesn't affect me as much now as it once did. Yep. And I have at times experienced anxiety and depression, a couple of times quite severely, once as a teenager when I was really unwell. But I don't identify as somebody who is mentally ill or disordered or disabled because I have had those experiences. and in terms of my ADHD, I don't consider myself disabled. If you'd have said to me, now I can look back and say, well, when I was at school, I was disabled. Not me as a person, but the context that I was in disabled me, and context really matters. So I think it's a difficult question to answer.

22:07It's not for me to say who falls under this umbrella of neurodiversity, because I think really for those people who believe that Alzheimer's, Parkinson's, anxiety, depression, bipolar should all fall under neurodiversity, what I'm hearing in all of that is the same message. We are here. We are not invisible. We need to be seen. we want to be valued members of our communities and of society we have worth we are able to contribute in some way and yes we also come with certain vulnerabilities does this need to be medicalized like you are a doctor if i just think about adhd and medication for example yeah quote unquote apart from that does it need to all be a medical model no not at all like is there something i'm missing in my head that says this can't be a social identity and yes people need support and all the rest of it and we need to adapt systems and policies etc to accommodate that but it feels like autism adhd dyslexia the whole lot has been over in this medical world does it need to be i don't believe it does i think i'd like to get to the point where we well it's got to happen is we've got to lose the d's i mean the acronym for adhd is a complete misnomer anyway it's not an attention deficit it's an attention surplus it's a hyper awareness and a hypersensitive neurophysiology.

23:53And the word disorder just has to go. I think Amanda Kirby, who I know has been on the show, has a woman I have tremendous respect for as a human being as well as a clinician. And he said that we as individuals are constantly evolving. We've got 40 billion brain cells, 70 trillion cells in our body that are all communicating with each other. And in nanoseconds, they know what to do with this amazing intelligence, self-replicating, self-repearing, reproducing, phenomenal creation that is the human genome. But we're also very vulnerable and we need to feel protected and loved and belong to different social groups.

24:41our intelligence flourishes when our emotional needs are met and if our emotional needs are met then nature's blueprint for our incredible unfolding intellect will achieve its goal but the curriculum of our evolution that is encoded in our dna has got us to a point where I think the context we live in is changing quicker than we are able to adapt to it. So epigenetically, we're not able to change as quickly as our environment is asking. I think for many people, we increasingly think that we don't have the agency or power to change our environment as much as we once did, which is how revolutions are started.

25:28and why I think we see so many neuro-revolutionaries emerging, whether they're just people in public life being open and honest and saying, well, guess what? I've lived all my life and some things about myself, I've not understood who I am and other people have not fully understood who I am because part of who I am is experienced through the lens of ADHD or dyslexia or dyspraxia or whatever it might be. And it's very liberating to know who you are. And I don't need somebody to tell me that I am disordered. And I think one of the reasons why 80 to 90 % of people who are autistic, dyslexic, ADHD, dyspraxia have never got a diagnosis is because when we were children, my generation, it was the mark of cane on your child.

26:19No parent wanted their child to be in that special needs class. Why? Because they all knew what happened to those children. They were discarded, they were ignored, they were isolated, they were bullied on the playground. And human beings are genetically programmed to experience anxiety and distress when we're isolated and alone. and I shudder now and I look back and think how many children have been traumatised by school and how with the best of intentions a lot of teachers have not understood the harm that we've caused to a lot of children. And so what do you make of what's going on with the SEND and the reform that's being called for there?

27:05I mean the SEND review is long overdue. Obviously we've got what's called the PINS project which is the Partnership for Inclusion in Neurodiversity in Schools, and the NHS ADHD Task Force, which was led by a remarkable woman called Professor Nuta Thapper, and Catherine Hinkley, and I think Ben Capredi, Adrian James. It's a great report, but it acknowledges the fact that there are half a million people in the UK, about 300 ,000 children, 200 ,000 adults, who are on the waiting list for an ADHD assessment. And despite claims of epidemics and overdiagnosis, which is completely untrue because we know there's at least 2.5 million people with ADHD in the UK, guess what?

27:54Only a quarter of a million of that 2.5 million have got a diagnosis and accessed medication. It's underdiagnosed. Unlike depression, where 8 million people every week take antidepressants. So there's your epidemic, there's your overdiagnosis. But somehow culturally that seems to be okay. So they're okay. So what is it about, for example, the ADHD community who are undeserving, overdiagnosed? So the reports are really good. And what they're saying is really forward thinking. I think the thing that concerns me, and as a social entrepreneur like you, I'm a default optimist, is whether or not there's going to be the political will to listen to a community that makes up, okay, 5 % of the electorate, there might only be two and a half million people in the UK with ADHD, but those two and a half million people have got brothers and sisters and mums and dads or their parents of children themselves or have got grandparents who are also neurodiverse, who have got colleagues.

29:00Everybody knows somebody who's neurodiverse. and certainly in the under 35 demographic for them it shouldn't have to happen to you to matter to you not the i'm all right jack kind of mentality that we see in some of the media that really the government has got to understand that this will cost them votes and as with any social movement throughout history whether it was changing what the medical manual described the lgbt community as changing what the medical manual said well black people are intellectually inferior and genetically inferior which of course is nonsense and racist and it's happening again isn't it we're not disordered we will not be put in a CEN class and continue to accept an educational apartheid based on some 19th century notion of what intelligence is and how we measure it and guess what intelligence isn't something that we just measure in schools it's also our ethics our values our ability to live in relationship our ability to contribute to our communities and our ability to influence change in in the societies that we live in and therefore we will not vote for you yeah if you do not create the kind of society where for us you know neuro inclusion yes like equal marriage and LGBT rights and equality and racial equality.

30:33And let's remember, inclusion doesn't mean equity. Sure. In practice, we all know that. But I think it is a generational thing. And 53 % of Gen Z identify as neurodiverse. Within 10 years, they're going to be the decision makers, the teachers, the new doctors, the politicians. And up with this, they will not put. it's going to happen. And what I'd like to see from politicians for once is real vision and leadership rather than this fear of media driven divisive kind of narratives about, let's find somebody to blame. Let's, you know, pick a minority and somehow blame the problems of the world on them and recognize that there's a silent majority.

31:20As I said before, I don't watch the news anymore. And I remind myself, because there's so much hatred and negativity and dishonesty from people who are supposed to be leaders and representatives of our countries or communities or whatever they might be. And I see so much that disappoints me about their integrity that I then remind myself that there are 8 billion people on this planet, 8 billion people who make up humankind. And every day those 8 billion people perform billions of acts of kindness and compassion. That is what makes being part of the human race such a privilege. Why does this all have to be so reactive and so, oh, let's bury our head or let's claim over diagnosis.

32:17Let's not worry about the 500 ,000 people who are on the wait list. Let's kind of keep muddying our way through. Hope it goes away. Like, why can government not seem to lean in and embrace this as an opportunity for change? I think you're going to have to ask them. I've been asking that same question for a while. I think in the short term, they just think, oh, what is this going to cost? And then I keep saying, but it costs you more by doing nothing. AAD, what is it, 17 billion a year? It costs the government to not support it. You know, I mean, I'm not quite sure. I think sometimes governments are very good at being very selective about which bits of data they use, as is probably every organisation, I think.

33:06I don't know. and like you I'm kind of interested to see how this is going to play out but I do think there has been such a seismic shift in cultural values over the past 20 years that have shaken some of the established hierarchies in a way that they don't really know what to do I don't know what we can do to make government change things I do know obviously there's an economic argument but But then again, I would say, well, we've used lots of different reasons in the past for why we exclude people, why we marginalise people, when the reality is that's about prejudice and it's about entitlement.

33:50And so what if it is 30%, 35 %? What if it is more people than we thought? Which it probably is. Is there a quantity kind of argument? Yeah. I think, well, yeah, because I mean, within research, you know, that standard distribution curve, it's the bottom 10%, isn't it? On the end of the standard distribution curve. Well, that standard distribution curve isn't really that standard at all, is it? And all of these different neurotypes are all spectrums and they all overlap. And Amanda said that, you know, they're not a fixed thing. They are a dynamic, you know, our intelligence, everything about us is changing and evolving and adapting every day.

34:36And I also think about what technology has done to our changing brains, for example, if you read the research around that. Our brains have changed. Our brains have changed. And they can change. Yeah. And not all of that change has been positive. But like every technological advance, you can say, well, this is a positive. And then you find out years afterwards, oh, well, maybe not as positive as we thought because now we know this. And this is what I think we've got to be really careful when we say, well, the science says. Science tells us what we know so far. And every day we're disproving what we know so far with more science.

35:15I don't know what it's going to take, Ben. I do hope that this government is a bit more enlightened and that they realize that they all do, actually. Whatever particular political identity people have is that being different from me doesn't mean you are not human or that you're less human or less able or less intelligent or somehow othered. Because guess what? There isn't a single person in the world that has the same genetic profile as you. So no, there's nobody who is like you. But guess what? We share a lot of common values. And there's a lot of things that as human beings that we both can experience.

35:59and have experience of. And then actually what really matters to everybody most is the ability to live in nurturing supportive relationships, make a contribution to your community, feel that you've got value and worth, and that if in any way you feel denied, then it's not because somebody else is to blame. It's because somewhere along the way, we have not enabled people the way we should or we've selected who gets those opportunities to achieve their potential and I think that's coming I've got a lot more faith in human nature maybe than some people have but I do get why a lot of people are very frustrated and I think the ADHD task force that you asked about Ben and the partnership for inclusion in neurodiversity in schools, which are kind of two significant UK policy documents, I don't think that a government now will be allowed to let those gather dust on the shelves.

37:03I mean, if you listen to the voice of parents out there, because a lot of those parents were ADHD, dyslexic, autistic, they went to school and they know what happened to those children and they are not going to let that happen to theirs and they are not going to go away and they're not going to be silenced. And I think I know that part of the policy agenda around special educational needs and provision has now been delayed because government did not recognize the strength of feeling. But why do we have this sort of career or body of group of people called politicians who, generalizing here, have never been unhappy, have never done anything wrong, have never done anything different.

37:57Like, why do we... Is that true? I don't think that that's true in Georgia. Of course it's not true. Of course it's not true. But we have these isolated examples of your tax return or you drove to the wrong place or you broke those COVID rules. And they're absolutely sensationalized. They're absolutely blown out of proportion. Yet we seem to have kind of put politicians like partly on a pedestal, but then we constantly want to take them off. And it doesn't feel like we as a society have created an environment in which our decision makers or the decision makers within government can be human. And therefore, have we done our community a disservice by not allowing it to be safe for a politician to be open about being neurodivergent, for example?

38:52An increasing number of politicians are. Okay. And, you know, I mean, again, credit to anybody who commits themselves to public service because that's not an easy job. It's not an easy job to be a politician. and the vast majority of politicians are involved in in politics because they want to make a positive contribution to their communities obviously there's always going to be some who put personal ambition above everything else but i think it's just the nature of of politics and particularly the uk media isn't it that they like as you say to bring people down they want leaders to be visible But then at the same time, it's, well, if you're not going to say what we want you to say and bring in the kind of policies we want you to bring in, we're going to destroy you, which is the very antithesis of what democracy is.

39:48But I also think that they're only going to be allowed to get away with this for so long before the people of the country. And, you know, so this is the kind of society that we want to live in. These are the kind of schools that we want our children to attend. This is the kind of economy that we want and need. And these are the kind of opportunities that we want, not just for myself, not even just for my family or my friends, but everybody in my community, in my country. But is that really like rose-tinted idealistic? You know, is that really being realistic, like too much to ask? and it's like, no, Tony, I'm afraid that is not going to happen.

40:35Nice idea. I think it has to eventually because we know what happens to countries where the people who are leading the country are completely disconnected from their electorate. Yes. And we know that a lot of our news media is fundamentally biased and that anybody who doesn't toe the line on certain kind of viewpoints is vilified. I don't know. I just think that there is a point at which no government is able to continue if it doesn't have the support of the people. And I think this is one of the wonderful things about neurodiversity, as I tell you, like the LGBTQ movement and the racial equality movement and the disability inclusion movement, is that there is a very significant part of the population who are not just a minority.

41:35We have families, friends, we're colleagues, we belong to different organizations and groups where everybody else is saying they are like us and we're not going to disadvantage them or marginalize them or exclude them because you said we have to. And that's a really positive thing. and I'm optimistic about the change. I'm struggling with the pace of change. Yeah. I've been in this world for five minutes, right? And you've been in it for over two decades. Like I can feel myself as you're talking and we're talking about education system, political system, healthcare system. And I can just, I can feel the anger rising in me, frustration of just like, can't we just sort this out and I've been here five minutes how do you deal with that over this 20-year period because every day I meet people who have inspired me and given me so much faith and hope I was talking to a young guy who I worked with when he was 16 and going back 20 years and he showed me some of his work he was doing a levels at the time and it was clear to me that he was dyslexic and probably autistic and adhd and i said i didn't know you were dyslexic and he said i'm not i mean oh right okay and at that you know i'm talking 20 or years ago it was like young people didn't want that label never mind their parents and he really struggled he didn't do well in his exams and then to cut a very long story short Ben he eventually realized that he was dyslexic ADHD autistic learned how to learn successfully for him went to university got a degree then trained to become a teacher then trained to become a special needs coordinator and his first job as a qualified special needs coordinator he was asked to speak to the whole school assembly it was 800 young people in this high school and he introduced himself and said you know, I'm Dan, I'm the new sort of special needs coordinator.

43:48I'm autistic and ADHD and dyslexic. He said, I'm not going to ask any of you to put your hand up whether you are, but if you've got a friend in here who's autistic and dyslexic and ADHD or neurodiverse, he said, would you stand up? Every young person in that school hall stood up and it was a Spartacus moment. And I just thought, wow. I said, I'd have loved to have been there for that. And I said, you know what what what did the young people say he said well he didn't say anything he said but I mean they're great with me and so are their parents I'm one of them I said what did your colleague say he said well one of them said you know that's made me really uncomfortable and I said what was his explanation he said well he said for years we've been telling those children well we don't really expect you to get any qualifications we kind of abdicated responsibility it was that thing well if you're not learning and achieving in my class it's either because you're lazy, you're stupid, or there's something medically wrong with you.

44:45It wasn't anything to do with the culture of our education system. Really, we've been saying to a lot of those kids, you're not like us, you don't belong here, and then here are you. And you're a teacher and a special needs coordinator. That's a little bit uncomfortable, you know. And, you know, again, another young woman, a young black woman, whose care experience brought up in a rough, very white working class area who hardly went to school for obvious reasons and was overweight and walked with a limb, bless her, because she had an accident and she had so many things going against her. And for various reasons, ended up staying at school, going to sixth form, becoming head girl, going to university, getting a master's degree, is now a social entrepreneur in her 80s, you know, employs people and is, in terms of social capital, is having an amazing impact in the work that she's doing.

45:46So every day I meet people who,

45:52despite how we marginalize them and disadvantage them, because that's a whole other story about care experiential people, you know, this idea that we prioritize looking after them. No, we don't. They get a rotten deal. from public services. And interestingly, a lot of them neurodiagnosis as well. But of course, we blame everything. It's the reason they're not achieving in school is because they've been traumatized, not because we can't be bothered to screen them for dyslexia, which we know affects one in 10 pupils or ADHD, which affects one in 20. And I meet so many people like this every day who have achieved so much and contributed so much, not because of our education system, but sometimes despite it.

46:38Not because, you know, our media and our politicians have done anything to enable them because for years the message that people like Dan and Catherine were hearing was, you know, you're not really one of us, you don't really belong here, you're not bright, you're not capable, you didn't go to the right school, you don't live in the right area, whatever it might be, and then look at what they've done and what they've achieved And I just think, you know, that gives me hope because despite all of the barriers that exist within our education and health system in particular and culturally, there is a triumphant human spirit in there that will not be beaten down.

47:20And I seen it a lot in, you know, you look at some of the heroic figures in the racial equality movement over the past kind of century, particularly over the past sort of 50, 60 years within the LGBTQ community, now within the community that is, you know, identifies as ND. and I just think, you know, wow, it is a triumph of lived experience over theory. This is about the indomitable human spirit saying, no, I'm not going to be put down. Yes. I have something to offer here and I am somebody of worth and value. Yeah, and I'm not alone and there are kind of people like me. I do belong. Yeah. Yeah.

48:06What do you say then to the half a million people, children and adults, who are on the ADHD wait list? Write to your MP, keep writing to your MP, write to the Prime Minister, write to the Director of the Health Service at Whitehall, and politely, respectfully, tell them that you're not going to go away, and that you're here, and that you want to be able to achieve, to contribute to your community as a citizen. And, you know, I don't believe that anybody out there wants to be disordered or labelled disabled. But it's trendy, isn't it? Well, it's also trendy, isn't it, for politicians to say, well, it's just because people want benefits.

48:58Well, you know, I'm sorry, I'm not buying that at all, really. But, you know, if you're going to disable them in school, you can't then say to people at 16, you're not disabled anymore. You can't have it every which way. So why don't we embrace this shift in public attitudes, make our education system a place where, you know, if you're a parent and more and more a dad, you can be confident that your child felt safe and protected and loved and able to achieve their potential and not like a square peg be knocked into a round hole and not come home from school distressed every day. Or not go to school.

49:41And then be threatened with a fine if your child is off. Like that's going to stop your child from being distressed or make your... I mean, the crassness of it, really. And I just think, well, you've got to sort of keep reminding everybody that we're here and we're visible and do it in a way that dignifies you as a human being. don't resort to the kind of behaviour and ignorance and divisive kind of attitudes that we see from certain parts of the media. That is not who we are. What do you think the role of people with influence and public visibility, celebrity influence, What do you think their role for the neurodiverse community is?

50:33It's absolutely crucial. And I salute, I mean, very recently we've had Annie Lennox talk about her ADHD and Cat Burns, who is another remarkable artist. So many people in public life, so many comedians that we see on television, so many artists, musicians. I mean, God, the world would be a very, very dull place without us. wouldn't it? But I do think it's important because they're sending a message to other people to say, guess what? I'm here. I'm not invisible. My character, my values, there are so many things about me that are not defined by the fact that I've got ADHD. But I am not ashamed of the fact that, you know, I am ADHD and having an ADHD neurotype means that the way I experience the world is a bit different to everybody else.

51:28But guess what? There's an evolutionary reason why there's so many of us around. And what we contribute to society, you know, is phenomenal. And we don't just work in television or the arts. You find people with ADHD in every profession in the world, including politicians. And therefore, people in public life more and more speak openly and if certain parts of the media want to take a shot at you for doing that let them because they will not will not will not silence us let them yeah and be a voice for other people who don't have one particularly young people because guess what as adults you are able to choose careers and choose lifestyles that play to your strengths where you were able to allow your creative artistry to flourish and be the amazing talented people that you are but for young people in school they don't have that choice yes and they need people like you i find it interesting that had a brilliant lady sat in that seat a few weeks ago tony and she's got millions of followers and she said well i'm not diagnosed adhd i 100 % know i am okay but it seems like wow everyone's sort of jumping on the you know there's this oh it's trendy there's this narrative out there that is and i'm paraphrasing for her ultimately trying to actually silence me so that it gets to a point I guess where people groan oh here's another one and therefore it actually silences people of influence speaking up yeah and I think that's really sad because I remember when Ben Fogle you know makes the documentaries he went public about his ADHD a couple of years ago and and when he announced it you know he put in brackets ready for the yawn.

53:31Don't allow certain newspaper journalists or politicians to make you feel ashamed of who you are. You cannot allow that. And this disparaging kind of thing about, oh, it's a bit trendy. I mean, it's absurd because, you know, 80 to 90 % of us don't even know that we're dyslexic or ADHD or autistic. How can it be trendy if the great majority of us don't even know and the fact that people are exploring that without shame is a really positive thing and whatever point you get to whether you find out you have adhd or not it's actually an important part of your process as a human being and understanding who you are and how you relate to the world and how people relate to you is absolutely essential to like it's weird that it's a privilege to...

54:24How dare you be different? How dare you understand who you are? Yeah, yeah. Is the message, right? Yeah, yeah. And the fact that there were certain political think tanks and that were paying journalists to write negative articles about ADHD a couple of years ago. And I just think, well, God, what is it you're so frightened of? Yeah. That people cannot be who they are. Why is that? The change is... Why is that a threat to somebody? I don't really understand that. Change can be very scary and very uncomfortable and holding a mirror up. As I've seen over the last 10 years with people drinking differently.

55:06And that's just a choice of drink. But it being so woven into our identity. and I do strongly believe that this is an identity shift crisis change much more than some medical you know I know we give the NHS a really hard time and I know there are lots of people on waiting lists and there's absolutely no good reason for that right or or a no good reason why we can't tackle that head on instead of going, oh, overdiagnosis. Oh, you don't need a diagnosis. You don't really need one. But actually you do in this country because if you've got a child, your child would not get an education. Exactly. No care plans.

55:57So they've, you know, they've created a situation in our schools, legislation, where your child couldn't get the kind of education they wanted or needed without a medical diagnosis. Yes. because the system is designed for a certain type of normal child, which guess what, doesn't really exist. And the idea is we will make you be something that you're not. And in some respects... We'll make you fit in. Yeah. But it's also, it's like, it's really regressive, isn't it? It is. It feels like we've gone back a century with some of the messaging that we're getting about, you've got to think like this, you've got to be like this, You've got to look like this.

56:40But it reminds me of David Attenborough as my... An incredible... Like number one. Yeah. Number one hero. Like my pseudo-grandfather, and I've been very lucky to meet David Attenborough. Anyway, I remember when, you know, Al Gore and Convenient Truth came out, and we've made some bad decisions, and, you know, that was, I want to say, 1998, something like that. Still now, we have the naysayers, right? still now it's an inconvenient truth and it's uncomfortable and you know sitting here chatting with my blood pressure going up but in a good way and my kind of overwhelming galvanizing feeling of like no no this isn't going to turn back this is a body of people that will not be quiet and this is a group of people who are having pretty profound and i can only speak personally moments of self-discovery right and kind of like this is it's what i'm like this is why i do those things because it's that personal and it's that individual and it's that profound then so the neurodiversity movement is an inconvenient truth is what you say i am and i agree with you completely.

58:00And there's, again, there's the bit of me that comes back to this idea that what human beings need in order to flourish is understanding to be known, compassion and support, and not told what you've got to be, told what you've got to do. And these are the consequences if you're not, because that's what our schools of a hundred years ago were like. And maybe there are some people that would like them to be like that again. And you're going to have to ask them the reason why. You're right, there is a shift taking place, I think, in human consciousness. And now we're into the whole area of noetic science now, that something very, very significant is changing around our value system.

58:47And the fact that this planet that we call home, which we are treating very badly, and that everything that we see on the media is controlled by a very small number of very wealthy people. I think there are a lot of people who are challenging a lot of things. And that's got to be a good thing, I think, because if we don't have evolution, then we end up with revolution. And we've seen the consequences of that. And I think maybe the internet and the World Wide Web for all, you know, I think social media can be very toxic in that we need to de-digitize our lives a little bit. The democratization of knowledge over the past 30, 40 years has been wonderful.

59:33And it reflects, doesn't it? I mean, you know, think of some of the newspaper headlines and political comments about ADHD is all because of people on TikTok. Yeah, yeah. Like, well, that's a bit glib. And time all causes autism. Yeah, yeah. So, yeah, I agree. I think there is a shift in consciousness in humankind at the moment. I think that's a good thing. I think it's something that's going to grow exponentially. And I think some of the more extreme and divisive voices that we see in our media and in our politics, it seems to me a bit like the death throes of some dying hierarchies. And, you know, that's long overdue.

1:00:14I've got a little bit more faith, I think. Yeah, but it's good, Tony, because the third time we've sat on here together and I know that both previous times as the same as today I leave thinking keep going there is hope and things are changing maybe not as fast as we all want yeah but they're changing and I guess we're aiming for that tipping point where enough people know, believe, identify. And that feels really good. That feels really galvanizing. And yeah, today anyway, I feel really hopeful about that tomorrow. I might not do, but today I believe that the right things will happen. So do I.

1:01:04But I think that encouragement, you know, I want to say to every parent out there, don't give up on advocating for your child don't allow a system to do more harm than good you know i know there's a lot of very dedicated compassionate committed teachers working in schools but they are struggling against a system where they know that this is not working for a lot of children because what we're measuring isn't necessarily what's best for children it's some mother agenda. You know, love your kids and be there for them and advocate for them. And that doesn't mean say ADHD, autism is ever an excuse.

1:01:46It's not an excuse for underachievement or dependency at all. But for every young adult out there who is finding their way in the world and discovering what their identity is, have the courage to be who you are and the kindness to be who you are and have the courage and the kindness to stand alongside somebody else in their journey towards being who they are and i think if we all did that a bit more than we would be a bit of a better place yeah i agree so last question tony we have our green dot badges you're wearing one i'm wearing one and we sell those on our website and money goes towards supporting our charity we ask our guests at the end of each episode who they would like to give a badge to and so last question for you who would you like to give your second badge to well you know i talked about two young people who i met who who have inspired me and like many people so i think i'll if you give me two i'll give one to katherine and one to dan cheeky because they're people who I've talked about today and I think they're great they're great role models and inspirational people who again prove that you know I can is more important than IQ yeah like that I think we can find another one for you Tony you can have two thanks Tony it is great to see you it's great to hear you and as I said I take a lot of I take a lot of hope and faith I guess from listening to you and knowing that you've been doing this and in this space for so long that you haven't given up and that you keep going and that you have faith in what's coming next.

1:03:35And I think we can all take a lot of hope from that. Thanks very much. Thanks, Tony. Cheers, Ben.

1:03:47That'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.