People diagnosed with ADHD "dying younger"

28th January 2025

bbc.co.uk/accessall

Access All – episode 144

Presented by Emma Tracey

EMMA-         Hello, this is Access All, and I’m Emma Tracey. When I heard about a dad who had had the alphabet tattooed on his arm so that he could chat to his non-speaking son, I really was all-in because I also love a disability hack. So I thought I would grab him for a chat, his name is Dan Harris, and Dan is with me. Hi, Dan.

DAN-             Hi, Emma. My pleasure to be with you.

EMMA-         Lovely to have you. Now, tell me about how this tattoo came about?

DAN-             Sure. The inspiration, Emma, was that I have a non-speaking son, 11 year old autistic boy, and his name’s Joshie, affectionately known globally as the Joshie Man. He communicates in a different way to others, so whilst he won’t verbalise his communication attempts always, he will use a talker. A talker is basically an iPad with some software on there, and that allows him to communicate whether he’s hungry, or tired, or wants to go to bed, etc.

A problem with technology, Emma, as you will know very well, is batteries run out, you lose reception, they even get lost. So I was just really concerned about those occasions when he really wanted to communicate, and so I got a tattoo on my arm, which was very, very unusual for me. I’m in the professional world, so I would never kind of consider one on my arm, apart from this one narrow purpose which I thought was really worthwhile.

EMMA-         Tell me all about the kind of process of getting the tattoo made?

DAN-             It took about two and a half hours, but it felt about two and a half days, Emma. I’m not good with pain, and actually I left the parlour after three letters because I was really struggling. I came back later. Once you breathe through that pain, you can actually realise the end objective.

EMMA-         So tell me about the tattoo, what does it look like?

DAN-             Basically it’s a square with the letters of the alphabet. It’s very clean and crisp, there’s no kind of decorative arrangements around it, because the purpose of this was that I wanted Joshie to be able to very easily point to my arm and communicate anything that he wanted.

EMMA-         So can he spell out words then?

DAN-             Oh, fantastically. We had no expectation that he would start spelling, but this tattoo has just given him a massive springboard. Even just last night, we spent three or four minutes with him on my arm spelling out all of his favourite animals, then his family names. And what’s been amazing for us, Emma, is that it’s gone from an understanding of the word itself, to actually understanding how to make up the word using letters.

EMMA-         Right, so it’s not only meant that he can communicate with you when all technology is elsewhere or whatever, it’s also improved his communication?

DAN-             That’s right. And one of the best things, Emma, is that every morning he comes into my bedroom, and he undoes my bed covers and he just has a little check that it’s still there.

EMMA-         Awwh.

DAN-             I don’t think he understands yet that it’s permanent. The breaking news is, Emma, I’m going to do another tattoo. So on my right arm I’m currently designing a tattoo to go there which will allow him to represent numbers but also basic mathematics.

EMMA-         Wow! I mean that’s dedication, Dan Harris. Thank you so much for speaking to me.

DNA-             My pleasure. Thanks for having me.

EMMA-         On with the show.

MUSIC-         Theme music.

EMMA-         This is Access All, and if you want to get in touch with us about anything at all, but particularly this week your disability related tattoos, please do. You can email me, [email protected], and we’re on Instagram and X @BBCAccessAll. And do help a girl out by putting in a description of the tattoo and what it means to you.

                     Now, before we get down to business, I just want to give a big shout out to my disabled boys. Jake, who won The Traitors, he has cerebral palsy. Well done, Jake. And Alfie Hewett, who went and won the Australian Open wheelchair tennis final for the second time. It’s his 10th Grand Slam win. And he also went and won the doubles with his partner, Gordon Reid. So, fantastic work, Alfie.

                     On this episode, I will be speaking to Phoebe-Rae Taylor, the star of Disney film Out of My Mind, which is a coming of age story about a teenager with cerebral palsy and her new communication aid.

                     But first, adults diagnosed with ADHD are dying sooner than they should. That’s according to the first study of its kind. University College London used data from nine million British people who had died, and found that those with ADHD have shorter life expectancies: women by nine years; and men by seven years. Josh Stott is a Professor of Ageing and Clinical Psychology at University College London, and he was the lead researcher on the project.

JOSH-            Hello.

EMMA-         Also with us is broadcaster Cristo Foufas, who has ADHD.

CRISTO-        Hi there.

EMMA-         Cristo, we’ll come back to you in a moment, but let’s start with you, Josh. What was your reaction to the findings of this study?

JOSH-            I wasn’t really surprised, because I think there are lots of reasons why people with ADHD die younger in the current societal setup and framework that we have. I thought maybe the magnitude was a bit bigger than I expected, but I wasn’t hugely surprised.

EMMA-         What were the major factors that you found that contributed to the early deaths, and why were they happening?

JOSH-            We didn’t look at causes directly, so I just want to be clear on that. We only looked at the kind of disparity that we find, and we wanted to highlight that. However, I can make some kind of educated guesses about causes based on what we do know. We know that people with ADHD are more likely to have addictions to alcohol, cigarettes, recreational drugs, and eat more than they should perhaps. Partly because of the nature of ADHD, it can be really hard for people to manage kind of impulsive behaviour, and that is associated with addictions, and also as is risk taking, which we know people with ADHD are more likely to do.

We also know, very sadly, that people with ADHD are much more likely to have mental health problems than people without, and really sadly, are more likely to die by suicide. A lot of that is the way that society is perhaps set up for neurotypical rather than neurodivergent people, that leads to a kind of discrepancy between how people want to be and how society supports and enables them to be.

EMMA-         Why is there a difference between the likelihood of women dying early, and the likelihood of men with ADHD dying early?

JOSH-            Yeah, it is higher, but if you were to go with view that it was different. I rather suspect, and again this is speculation, but we know many women with ADHD, because it’s often seen as a sort of male condition I think, I think they can feel sort of more adverse effects sometimes from societal kind of norms. And I think people and professionals may be less likely to adapt their kind of behaviour to women, which therefore may mean that women struggle to get their kind of healthcare needs met perhaps more than men, because people see it as a kind of mainly male thing.

EMMA-         Josh, what is the specific data that you compared person to person?

JOSH-            So, we compared GP records’ data for people with ADHD compared to people without ADHD in a sample of nine million GP records. We looked at how long each group lived and compared them. There are some kind of issues with that that I can quickly talk to probably just to give some caveats. One of the main ones really is that if you look at the rate of diagnosis of ADHD in GP records, which I think reflects the rate of diagnosis in the country probably, it’s about 0.32% in adults. Now, that is clearly not what the prevalence of ADHD is, so actually how common ADHD is, which NICE guidelines, the central UK system, say should be about between 3 and 4%, and others say it should be higher, up to kind of 8%. Clearly, whichever figure you put on the sort of prevalence, 0.32 is much lower, and so even at the lower conservative estimates of prevalence we estimate that we only captured about one in nine of the people with ADHD in the UK, because that’s who’s diagnosed.

EMMA-         Okay. So, obviously ADHD UK say that the waiting list for diagnosis could be around 100,000 people.

JOSH-            Yeah.

EMMA-         Once the diagnoses have caught up and all the assessments have been done, would that change do you think your result? Would you go back and have a look again?

JOSH-            We can’t say exactly what it would mean. However, it could be that people with ADHD who are not diagnosed could be people who haven’t had much contact with services, or have lives that are bit less kind of organised and chaotic, therefore might be people actually who have worse kind of health problems. So, it’s not quite clear which way it would go.

EMMA-         Cristo, you’re still with us listening to Josh Stott there. You have ADHD. What was your reaction to the results of the study that we’re talking about?

CRISTO-        I have to say, a complete lack of surprise to be honest. Because the reason that I discovered I have ADHD was because I was trying for years to find a solution to some of my more addictive behaviours, especially around food, but I’ve had other compulsions and addictive behaviours in the past. I’ve drunk too much, I used to drink until I fell over. I was definitely borderline turning to alcohol, using it as a crutch, and just drinking way, way too much. Many, many years ago I used to smoke an awful lot of weed, especially in my own company. I mean most people used to smoke weed because they like to be sociable, I used to smoke it because I really felt that I would climb the walls on my own if I didn’t. I now realise again, it was probably to quieten my mind.

Those are all addictive, compulsive behaviours that are not very good for you, that probably is an explanation as to why then people who have ADHD will then perhaps have medical symptoms as a result of their addictions that mean that they have shorter lives.

EMMA-         And how did you seek support? How did you start looking at ways you could sort that out and live a bit easier?

CRISTO-        Frankly without being vulgar, money. I mean I’m in a very fortunate position, I’ve always had a presenting job, broadcasting job, I’ve always been in a job that has given me the means to be able to throw money at the problem. I realise how incredibly privileged that I have been in order to do that. I had to go private in order to get my ADHD diagnosis. I had to go private to get the medication when it was on a shortage. I’ve tried to get therapy for a long time, and CBT, regarding why I was eating too much. It was going private and being able to consistently have that therapy for a long period of time, that meant that I was able to get to the bottom of what was going on and join all the dots between that and ADHD and everything else.

EMMA-         Josh, what should people who maybe aren’t in the same position as Cristo do, people who don’t have the money to go private and get what they need when they need it to support themselves?

JOSH-            It’s hard to say, because there are these really long wait lists.

CRISTO-        Can I say something about that?

EMMA-         Yes, Cristo.

CRISTO-        Because I now take medication, but I take a really low level of medication every day. However, broadcasts like this, it’s awareness, it’s all of these things, because knowing more than having the financial means, and I know that I can say this with the benefit of having gone through it, but I genuinely believe knowing is a major part, it’s actually half the battle, because it makes it easier to get out of the cycle of, ‘Oh god, I just have no willpower.’ Well actually no, there is a medical reason as to why I might want to have the compulsion to go and engage in that behaviour. So therefore that awareness gives me the tools perhaps to say to myself, “Right, okay, it isn’t a lost cause, it’s not just me going and doing this, I can now navigate what I need to do to get over it.” Is that to distract myself? Is it to go and do something else that will give me some sort of fulfilment?

EMMA-         Josh, what could medical settings do differently to help reduce the chance of these early deaths?

JOSH-            So what we could be doing differently I think is awareness again, like Cristo says, in the absence of diagnostic equality. I think it is also worth thinking about ADHD as a kind of spectrum as well, I think, like we think about autism. And so I think understanding that you may be somewhere on that spectrum, an awareness, and doctors considering that when they meet with someone. Because I think a part of this is what Cristo’s talking about around addictions, but I think there’s also perhaps something about medical services not being set up to meet the needs of people because they don’t think about it. For example, some people with ADHD have sensory sensitivities, they’re overwhelmed by lights and noises, and actually GP practices can have that in there and people don’t get the healthcare they need because of that.

I guess it’s often called neurodivergent affirmative practice. It’s kind of the idea that we think about someone may have some kind of neurodivergent needs, and let’s think how we might adapt to that. I think there’s some training around that that can be done in the absence of diagnosis.

EMMA-         We’ve heard a lot on this podcast over time about people with ADHD, some people struggling with executive function and keeping everything on track, losing things, forgetting appointments. Are there sort of mechanisms that could go in place to help with that, do you think?

JOSH-            Yeah, I was going to say I think there definitely are. The idea that services should be more digital savvy and digital friendly. Because I think if I try and register or make an appointment at a doctor’s or a GP or a hospital, at the moment it’s quite hard, it requires a lot of organisational kind of will. I think just increasing and making those systems better in itself, would be very helpful, having definite reminder texts that tell you when an appointment is.

EMMA-         Thank you so much, Josh Stott, and thank you to Cristo Foufas as well. We want, and we actually need your voice, we need to hear from you on all of the subjects we cover, including this one. You can contact us by email, [email protected], or you can get in touch with us on social media, on X and Instagram @BBCAccessAll.

MUSIC-         Jingle.

EMMA-         Phoebe-Rae Taylor, hi.

PHOEBE-       Hello.

EMMA-         You’re 15, you’re from Essex, and you star in a new Disney film called Out of My Mind. How cool is that?

PHOEBE-       Oh my god, it is insane.

EMMA-         [Laughs] The film follows Melody, who’s 12, and like you she has cerebral palsy. She’s also non-verbal. The film follows her as she navigates her first foray into mainstream school, making friends, and a new device that she gets with a synthetic voice to speak her words for her. How did you get the part, Phoebe?

PHOEBE-       I have never really had an idea of acting before. But when I was 10, my mum got me a role with a modelling agency in London, and it kind of all happened through that.

EMMA-         Did you audition?

PHOEBE-       Yes, I did. I did loads of auditions actually, until I finally got the part when I was 13.

EMMA-         Right, so it was a long process.

PHOEBE-       Yeah.

EMMA-         And what was filming Out of My Mind like?

PHOEBE-       It was the best experience of my life. I met so many amazing people.

EMMA-         How would you describe Melody, your character?

PHOEBE-       She’s very passionate about what she wants.

EMMA-         Are there any similarities between you and Melody, apart from being similar age and having cerebral palsy?

PHOEBE-       I always say that Melody is the version of myself that I want to be, because she’s so confident and I’m not as confident.

EMMA-         But she does face some barriers in the film. Her classmates and even her teacher can lack understanding and empathy for her. Have you had that sort of thing happen to you in your life as well?

PHOEBE-       Oh yeah. My whole life I have been treated differently, or I’ve been bullied and laughed at, so I’ve really got used to it.

EMMA-         And how do you deal with that, Phoebe?

PHOEBE-       It really knocks me down sometimes and really affects me. But this experience of getting to play Melody has really taught me a lot about myself and that I should not care what other people think of me.

EMMA-         That is fantastic. We have a clip from Out of My Mind here where Melody is really frustrated because she thinks her parents might not let her go to a mainstream class, but her older neighbour, Mrs V, tells her to make her voice heard. Let’s hear it.

[CLIP]

MRS V-         U-n-f-a-i-r. Unfair. Right, unfair. So, what are you going to do about it, hmmm?

MELODY-     Um.

MRS V-         Listen, hey. You’re going to have people taking care of you the rest of your life. At some point you better learn just because someone wipes your ass, doesn’t mean you to have to kiss theirs.

EMMA-         I love that line, it’s one of my favourite lines. The great thing for Melody, and one of the reasons I think why she’s able to be so confident, is that she has amazing people around her. Have you had big supporters like Mrs V and Melody’s parents around you as well?

PHOEBE-       Oh yeah. I have had such an amazing support network: my family; my friends. I have always been lucky with friends growing up. But now I have found the nicest friends ever, and I don’t think I’d be who I am without them. Yeah.

EMMA-         That’s fab. Jennifer Aniston is practically your co-star in this film, she plays Melody’s internal voice, and what’s absolutely brilliant is that you and your family and Melody in the film and her family, both love Friends. That must have been absolutely amazing to have Jennifer Aniston that close to you?

PHOEBE-       I am obsessed with her. My whole entire life really I have always watched Friends, and Jennifer Aniston has always been my favourite actor, so when I got told that she knows who I am and was going to be a part of this film, I cried for hours.

EMMA-         Awwh. And did you get to meet her?

PHOEBE-       Not yet, no.

EMMA-         Not yet, I love that! Some day.

PHOEBE-       I was so happy.

EMMA-         And you do use your mouth to speak, as we can hear, and Melody gets a new device with a synthetic voice. Phoebe, what research did you do to kind of get to know what it’s like to use a letterboard and AAC and devices to speak?

PHOEBE-       I met with tonnes of people who do use AAC and do need a computer to talk, so it was having those lovely helpful people I know there. And so that really helped me understand the role, and I really hope I’ve done those people justice.

EMMA-         Yeah. And you certainly did that, absolutely. I absolutely love the film. I can’t wait for all of our listeners to hear it, and I want you to tell me what you thought of it and what you got from it etc, etc. What do you want people to take from the film, Phoebe?

PHOEBE-       I want people to take away that kids/adults with all different types of disabilities, even though we may look different, sound different, act different, we want to be seen.

EMMA-         Phoebe-Rae Taylor from Out of My Mind, thank you for speaking to me about such an amazing film. It’s available to watch on Disney Plus. Thank you, Phoebe.

PHOEBE-       Thank you.

MUSIC-         Music.

EMMA-         Thanks to Phoebe-Rae Taylor there, what a lovely chat that was. Now, you have been getting in touch, thank you very much for that. Martin was listening to our piece on the wildfires last week, and it got him thinking about some of the evacuation plans he has had as a disabled person. He said that in a previous workplace, whilst all his colleagues in the event of a fire would leave the building and meet at a designated spot, the disabled people would have to go to the stairs and press a button and speak to someone, and wait until someone came back to get them. He said that they were no less valuable, but they didn’t feel like that in that moment. I think lots of us will have evacuation plan stories to tell just like yours, Martin, so thank you for getting in touch and telling us that story.

                     Also on the email, Matthew Eagleton got in touch, and he said that partly inspired by Access All’s election coverage last year where we went and spoke to someone from all the major parties, apart from Reform UK who didn’t send someone forward for an interview. We also had a couple of roundtables where we discussed barriers to voting and barriers to the election process. Matthew went and spoke to some of the other clients at the disability services he attends, Burton Street Foundation in Sheffield, and he discovered that many of them were not ready to vote and didn’t feel able to, and partly because of some of the ID issues that disabled people have. So they went ahead and contacted their city council’s electoral services’ team and got them to come out to the disability services’ centre and to talk to the clients there and the general public, about how they can register to vote, how they can sort out all their ID stuff. And that’s happened, 20 people attended, and it’s gone really well. So we are absolutely delighted that that was as a result, at least partly, of our General Election coverage last year. Huge well done, Matthew, on all of your great work there.

                     That is it for this week. If you haven’t done already, please subscribe to Access All on BBC Sounds, and we will see you next time. Bye.

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