[MUSIC PLAYING] This podcast is brought to you by the Association for Child and Adolescent Mental Health, ACAHM for short. You can find more podcasts and other resources on our website, www.acamh.org, and follow us on social media by searching ACAMH. [MUSIC PLAYING] Hello, and welcome to ADHD, A Young Person's Guide. This podcast series focuses on attention deficit hyperactivity disorders, referred to as ADHD, and is designed to help young people and their families. It is produced by the mental health charity, the Association for Child and Adolescent Mental Health, ACAMH for short, in partnership with Clinical Partners, the UK's largest private mental health partnership. Search for Clinical Partners ADHD or visit www.clinicalpartners.co.uk for more information. I'm Dr. Blandine French. I am a researcher at MindTech at the University of Nottingham. My main research interests are on neurodevelopmental disorders, but more specifically, ADHD and dyspraxia. I work with young people and parents of children with ADHD, and I myself received a diagnosis of ADHD as an adult, which helped me make sense of my life as a child and adolescence and helped me go to university and put the right support in place. In today's podcast, we will be discussing the challenges of large changes in life with ADHD. This could be things such as moving to university or starting a job, developing independence, and of course, getting the right tips, advice, and strategies to manage these changes. Today, we are joined by Anita Salimi and Dr. Anna Price, who will be discussing this topic. So I am delighted to welcome Anita Salimi, who is studying biomedical science at the University of Warwick. Anita, could you please start with a brief introduction of who you are and what you do? Hi, Blandine. Thank you so much for this opportunity. I'm 22 years old, and I'm about to start the second year of my university in September. I was re-diagnosed with ADHD a year ago after being diagnosed when I was seven, but it was kind of kept hush-hush by both of my parents. And I'm working on the MAP study with Dr. Anna Price. MAP is short for mapping ADHD services in primary care. Thank you, and I'm also delighted to welcome Dr. Anna Price at the University of Exeter College of Medicine and Health, who completed a PhD exploring health care transitions from child to adult services for young people with ADHD on the CATCh-uS study and is currently researching health care support for ADHD in primary care. Anna, can you start with a brief introduction of who you are and what you do, please? Hi, Blandine. Yes, absolutely delighted to be here. Thank you for inviting me. As you said, I'm a researcher. I work at the University of Exeter Medical School in the Children and Young People's Mental Health research collaboration, or chYMe. And for the last 10 years, I've been researching young people's mental health, and for the last five years or so, my research has been focused on access to health care services for young people with ADHD. And as you said, it's moved from work looking at the adult mental health service provision to current work, which Anita is involved in actually, which is looking at primary care, so what happens when you go to see your GP, which, unfortunately, can be quite variable. So you might have a GP who understands ADHD, recognizes it. Maybe they have a service they can refer you to. Or you might go and see a GP who doesn't really understand ADHD and might not recognize that actually you have a need, which should be provided for. On a personal note, my husband has undiagnosed ADHD, and my son was diagnosed at the age of 19 with ADHD. And I tend to support him. Interestingly, I think I only realized that he had ADHD and he only realized through the work I'd been doing. I'd interviewed lots and lots of young people with ADHD as part of my research, and I was thinking this story sounds so familiar. And it's actually what prompted us to try and seek health services for him. Very interesting, thank you. So today, we have brought Anita and Anna together to talk about the challenges of large changes. At some point between the age of 16 and 25, you go through these big life changes that we are going to talk about. Transitioning to adulthood, whatever that looks like, is such an exciting time, but it also comes with challenges. So what are the specific challenges at this moment for people with ADHD around that time? How do we recognize where our ADHD might impact us before we get there? Anna, can you tell us a bit more about that? I think for any young person who's transitioning into becoming a young adult, there are lots and lots of changes and transitions that take place. So whether you have ADHD or not, there's lots of changes in brain development. It gets a little bit more tricky to manage your emotions. And then, of course, we've got practical differences that are happening. So we've got perhaps moving educational setting, maybe leaving school, or moving to higher education, or going to university, perhaps moving out of home for the first time, maybe living with friends or starting a job for the first time. And all of those things are difficult for any young person, and they require that ability. But if you have ADHD as well, they can be particularly difficult because you're managing change. That means that your routines might be disrupted. It means that the support that you have in place-- every day things, if you've got limited attention, you don't have to worry about them because you've done them lots of times before. There are people to support you. Suddenly, those structures are not in place, so it can be a really challenging and a worrying time if the society around you isn't organized in such a way that you're supported in the way that you need supporting. I don't want to go on too much about it. But the health service transition isn't helpful. At 18, when you're managing all these other changes, suddenly, you need to be accessing your health services in a different service in terms of support you have at home. If you then need support at university, you're living somewhere different, that can bring about lots of changes and challenges as well. Thank you. Anita, could you tell us how did it affect you when you left home as a young adult? What were the main struggles? I wasn't diagnosed with ADHD when I moved out at 18, and I found myself struggling a lot with a lot of daily tasks, which were supposed to be easy in my head. My main struggles were showering and laundry. For me, I think I would regularly shower about once a week. And sometimes, when I had big deadlines, it would go down to once every two or three weeks, which wasn't great. With laundry, it would be about once a month, when my partner at the time could remind me that I needed to do it or until I actually run out of clothes. And food shopping, finding meals, making and keeping any sort of appointments, or taking regular medication without the help of my partner at the time was also a nightmare. I think I struggled with my attendance to college a lot at the time as well. And I had a part-time job at the time too, and I think I was [? off ?] a lot because I couldn't mentally cope with the situation. So there was a lot of different impacts on your life in a transition to just moving away from home then? Yeah, no one really tells you how to become an adult. And when you have ADHD, I think becoming an adult has a lot of different aspects. And when you have ADHD, that is very difficult to manage. Anna. Thanks, Anita. It just made me think some of the things that you've said, and there's so many shared experiences and different experiences that I was privileged really to learn about through the CATCh-uS study research that I was involved in. So myself and my colleague interviewed over 100 young people who were going through transition with ADHD and their parents and supporters and heard stories about struggling to-- if someone had left home on education and then they'd been given the message they wouldn't need medication anymore. But then, without it, they couldn't manage their mood regulation and ended up having to go to accident and emergency because they got into quite extreme reactions to things. And it was this snowballing. So I met a young man who'd just finished his university degree, and it was an amazing interview with him. But he'd taken a couple of years in between that, where he'd not managed to go to university. He'd not had the support he needed and faced, I think, challenges that many young people have but somehow find their way through. But with ADHD, you've got a lot more challenges in that place, and unless you've got support in place or you have time to develop and come to the point where you've got a combination of your inner resolve, recognizing who you are as a person and growing up and then being ready to enter into the next phase. I just heard many different stories of amazing young people but had gone through a lot of challenges. Yes, and you touched on something there that I would really welcome if you could explain a bit more for us. We know from the CATCh-uS study, from many other studies that there is a gap in services in the UK. So there is a lot of services for ADHD for children through CAMHS and through other NHS services, but the adult services are really lacking. What we know is that a lot of children that turned 18 are discharged from the services, and there is no other service to move them on to. And that obviously is not helping. So even if you had really good structure in place, very good strategies as a child, as soon as you turn 18, regardless of whether you leave home or with these big changes, it's hard in itself. So it aggravates everything. Can you just tell us a bit more, just on terms of services, what you have found from the CATCh-uS study? So the study was conducted just a few years ago now, and things are developing and changing. We did actually create a map of adult specialist ADHD services, which is available on the UK Adult ADHD Network, or UKAAN, website. What we found is that, which many clinicians will be familiar with and young people trying to access support, in some areas there are specialist services, and increasingly, there are. But in some areas, it's very difficult to access a service, and most areas, there's really limited numbers of people delivering the service. So you end up on long waiting lists. So under the NHS guidelines, young adult, so if once you've turned 18 with ADHD, if you need health care and support, the first line, I believe, you should be offered medication, but then also psychosocial intervention, so counseling or support. In reality, what we found was the broad range of everything that should be offered under the NICE guidelines is not offered generally, and we got that from the interviews we did and from actually surveying services and surveying clinical commissioning groups. I believe it is an issue that NHS health services are aware of. And many of the people I've spoken who work in services really want to provide that support. But in reality, what that means for young people is-- I mean, I spoke to a young woman. She'd been on medication, and then just as she was doing her A-Levels, the medication stopped. It's like, this is really straightforward. I have a support structure in place. I have a parent who helps me. I've overcome all these challenges to learn. I'm engaged. But now I can't access medication, and it was just this layering of one challenge on top of another. It made it really difficult. So that sounds a bit depressing to talk about that. But there are other sides to that, which is just, you're not alone if you struggled to find a service. And just be persistent yourself. Ask the person who supports you, ask a friend, whether it's your partner or a family member, and go to your GP and ask again and again and again. It's there, but you have to fight for it. And I feel really strongly about that because it adds a burden for the person supporting the person with ADHD and the person with ADHD. And when, as Anita said, you're struggling to maybe get your food shopping in or do your housework just to make a clear space to study or to work, you don't want to have that additional challenge. Thank you, and that is a very important part in a transitioning conversation and adjusting to change because it will really impact how well you can adjust, whether you receive this kind of support or not. So thank you for sharing that. One of the other key factors about transition is what is sometimes called routine collapse. Now, what I understand by routine collapse is a big change in routine. We know that routine is key in ADHD management. So this is one of the strategy we teach parents who have children with ADHD, to keep breakfast at the same time, cleaning your teeth at the same time. And every time you remove or you change one of these routine, then everything has collapsed because the person with ADHD does not know how to do it unless it's part of that routine. So the concept of routine collapsed and changes in routines is very important in a transition. How can we create new routines, which will support us as young adults during this transition period? Anna, could you tell us a bit more about that? And then, I'll ask Anita. It's the first time I'd heard the phrase "routine collapse." But when you describe it, it's something that I recognize, that challenge around the things that are in place. There's a kind of flexibility that maybe neurotypical people have, where something changes, you need to go somewhere different or do something at different time of day, and you can manage that. And then, for people with ADHD, that could be just something that gets in the way of the next step, if it changes. So I think the first thing to do is just to be aware that if you're neurodiverse, that is something that will be challenging and will take a lot of brainpower and a lot of effort to get it set up. It's going to change, and you'll need support to get new routines in place. And it will take you time to get those routines in place. There's something Anita said just now. When she first became a young adult, she was struggling with-- found challenges around some of those routine life factors. And she was like, well, I didn't expect that. And I think if you're a young person with ADHD and you recognize or someone tells you, "This will be hard for you"-- you might have friends who go, "Oh, yeah that was a bit hard." And then, after a month, they've got it down. It might take you six months, or you may have to put an app on your phone. Or you might have to ask your parents to order your food for you and get it delivered. You might need a friend to come and visit you every weekend to socialize, but to help with your housework so that you don't get totally behind. The number one thing I think is recognize that that is a difficulty, and there are loads of strength to the way that your brain works and your ability to focus. But those routine tasks that you might find boring or struggle to focus on, if they're not in place, that gets in the way. See it as a special challenge and something that needs to be put in place and be patient. Possibly a message I'm going to repeat a lot, but ask for help. So recognize that you need that in place and ask people who currently support you. And you might not even think about it, the food put on the table for you or someone does the vacuuming. But ask those people to put something in place. As you're living as a young adult, you do actually have rights to support, to gain that support through the society we live in as well. Thank you, Anna. I would like to add something here before asking Anita her experience of that. I think something to bear in mind for these important podcast is that adjusting to change is not just about transitioning to adulthood. Any change at any point of your life, it would be affected. Starting a family, getting married, moving house, moving countries, changing jobs will have the same effect. We are focusing on the young adult changes. However, I think it's important that they know that throughout their life, any change will create that. And I would like to share my experience. I'm 40. Those big transitions have happened to me before. And I thought I had it done to a T of my ADHD routine. I know exactly what I'm doing. And when COVID hit and I didn't have the routine of living in the house, getting the kids ready, getting in a car-- I always brush my teeth before I get in the car. That's the last thing I do before I leave the house. But then, when the lockdown happened, I didn't have to leave the house, and then I forgot to brush my teeth. And I realized it was five days. I like to think I'm experienced in managing my ADHD, but it was a very big surprise to see how the change in routine, like a lockdown, which is a major change, really affected the simplest abilities, like hygiene or like shopping for food or your ability to manage your day-to-day life. And I think that's really important to know as well and to bear in mind throughout your life. Anita, have you got anything to add in terms of changing routines and routine collapse? As a child, I've never had any form of routine. I had a difficult upbringing where my parents' relationship wasn't the best. And so my mom oftentimes didn't have time to set a time aside for me and make a routine for me, and so I kind of grew up without a routine, which made it a lot worse for moving out as an adult or young adult. And then, when I moved in with my partner at the time, he took a parental role. And it was very bad for our relationship and was one of the bigger reasons that ended our relationship because he took on a lot of the responsibilities and reminding me of things and this and that. And it just wasn't healthy. So I've experienced routine collapse a lot. I think it's always a little bit disappointing to start feeling good about getting into a good sleep cycle or eating healthy or maintaining regular mealtimes, and then life throws something at you, like COVID. Or it can be nothing, and it messes up the whole thing that you've worked so hard on. I'm living alone now, and I'm learning how to do all these things by myself. And I think it's important to know how to pick yourself up and not give up, which is something I'm still working on, but to also incorporate fun little things or time for things you enjoy. Because people with ADHD brains are usually motivated by dopamine. So if you can turn chores into something fun, it will help a lot. Thank you. Following on from that, what support do you think might be important and can make a difference to someone with ADHD who needs to manage those large transitions? So you mentioned things like making chores a game, just trying to make them fun, and learning to build that routine. But can you think of anything else important? I think plan, plan, plan ahead, which is literally a person with ADHD's nightmare because thinking of all the little things you need to do can be overwhelming. And sometimes, you don't even have a lot of time to prepare for transitions. But when I move to university, I liked making little lists or checklists of everything I needed, so it would be like an achievement. But I still felt like I wasn't prepared enough. So personally, what I would say is that one, you should prepare as soon as possible, two, have someone who can nudge or remind you of certain things you need to do or even set reminders for yourself on your phone or something. And three, change is hard, so don't force yourself to adapt to a new environment and change immediately. If you feel like you need to let out frustrations or sadness, do it but also have sources of comfort and familiarity to help you through it. That's brilliant. Thank you. That's very insightful. Anna, do you have anything to add to that? Recognizing that change is hard and that it will be a process is really important, or has been. So my son was diagnosed as a young adult, and that increased understanding. So now, Anita, you said about planning, and then you said that that's something your ADHD brain just hates. Or I might check in with him and say, how are you doing? How's this looking? He'll kind of get stuck, unable to move forward. And he will now ask me to-- he'll say, I just need a planning meeting. And it's almost like I sit there with him just to help him have that focus to think about something that his brain doesn't want to think about, whether it's the next step of some bit of work he's planning or what will it be like when I go on this trip. What do I need to do to get out of the door? To begin with, I would do that for him. But increasingly, over time-- and it's taken probably, I think he would say as well, four years or longer for him to get it to that point than maybe some of his neurotypical peers. But now he's in his early to mid-20s. He can do that planning. But again, sometimes, when he gets stuck, he just wants me to sit with him, next to him, and we have a little meeting about it. And then, he can move forward. So find out the things that help you and the people that can help you and ask for their support. Because for me, that's really easy. My brain does that really easily. Some of the other things he does, I couldn't do. That's very interesting. Thank you. And we move on really nicely to my next question, which is how do young people know who and where to get the right advice and build a network to support your independence? Any idea on that, Anna, in terms of identifying the right support to move you safely towards your independence? I think it's a very, very good question. I mean, we have obviously have the internet out there and seemingly endless amounts of places we can go when we start googling things and looking. And I can share my own experience for what I found working with my son and through my research. So first of all, I just mentioned that, as part of our society, there are certain things in place that are available to support you. They are often very difficult to access, but it's worth it if you can get someone to help you. So there's something called Personal Independence Payment. It depends on how your life is affected, but you might well be eligible for that. So we'll put a link in for Personal Independence Payment, or PIP. If you're at, work there's something called Access to Work, which, again, is government funding that's provided to support you in the workplace. And also, in terms of support at home, there's health and social care, which is available through your local government or council. All of those things, you almost need a support system to even go through the applications. Unfortunately, it's really challenging. I'd say, in reality, the best sources of help that I've had as a supporter of someone with ADHD, and I think my son has had as well, is your friends and peers. The way you socialize, you might find that you actually end up with friends, if it's online socializing or people you meet and know, who also are neurodiverse. If you're at the point where you're up for talking about it and you ask for help, then often, they might be able to share their experiences. Through our research studies, we've got some short video clips about what it's like to become a young adult with ADHD. So that's for the CATCh-uS study, and we'll share the link to that. And then, national organizations, so I mentioned earlier the UK Adult ADHD Network. So they've got a mixture of clinical-focused resources, but also, they have got some resources for young people. And then, there's the ADHD Foundation as well. They have some really good resources on their website. There's one YouTube link that I found really helpful when my son was first diagnosed, and it's called How to ADHD. It's a young woman in the states, and I just love her short clips about her ADHD brain and what happens. And she's got talks about different things, transition, starting work, how to focus. And I think just understanding that you're not alone-- actually, there's a big proportion of our population who have these differences and sometimes struggle with the way our society is organized. So is it also about identifying maybe the people that have similar difficulties or that are willing to help within your environment? For example, at university, is finding a student peer that is happy to text you before the next lecture to make sure you don't forget an assignment or something and maybe at work, trying to find this colleague who, again, will knock on your door before a face-to-face meeting to make sure you haven't forgotten or will bring lunch for you because you have forgotten to pack lunch yourself and it's been a really busy day, so is this identifying peers with young groups? Anita, can you talk to us about your experience of identifying who and where to get the right advice from in terms of building your independence? So it's not always available to everyone, but just having someone you can just talk to is a huge source of comfort. I think independence shouldn't mean that you feel alone. And if you do and you don't feel like you can reach out to anyone who can support you, then, for me, I got support through DSA in the university. So DSA is Disabled Students' Allowance. My DSA-assigned ADHD mentor is literally my best friend. We meet about once or twice a week, and I can talk to him about anything I want. And since he has ADHD himself, I often ask him for advice on things that I'm struggling with or finding difficult at the time, and he keeps me in check for deadlines and celebrates my smallest victories with me when I'm not feeling so good about my independence. Oh, that's very nice. Thank you. So we've just talked about the importance of relationship and having peers and support group. We know that having ADHD creates its own issues with friendships and socializing. Especially when you just move to a new place, it can be really challenging. So what can young people do to be as ready as possible to meet and bond with new people throughout these transitions? Yeah, I've thought about this quite a lot. As someone who doesn't have ADHD, I think it's really important to recognize, if you do have ADHD, to recognize and believe in your own ways of socializing and meeting your social needs. So my son is really into online gaming, has some really strong friendships through online chat rooms and socializing. And until COVID happened, there was me, this person who loves him and wants to support him, basically saying, "Have you tried socializing in a different way?" Always suggesting these other ways of socializing that, for me, would be better, and it's taken me as his supporter years to recognize the value and the reality of those friendships. And I think as a young person, you will have your own way of meeting your social needs, and they might not be recognized by someone as neurotypical. They might not be going down to the bar and chatting to someone. It might be just gaming together with someone. It might be a chat room or whatever. But just be a little bit stubborn maybe and recognize and value your own social interactions and be patient because they will develop and mature at a pace that's real for you. So as the wanting to help but maybe slightly ignorant neurotypical person, what I've learned is actually just believe in your own. Trust your own instincts. And obviously, you'll have challenges. And everyone feels lonely when they-- as a young adult, I think. I certainly did and do, at times anyway, as an adult struggle sometimes to connect. So there are all those things out there. Join groups. Be aware of what's in and out of your comfort zone. Think about what you need. But don't try and conform to a standard that isn't really about meeting your needs because that just causes so much mental anguish, and it's just not necessary. Thank you, Anna. I really like this message. That's really powerful. Anita, have you got anything to add? To me, a lot of my friends, I made online. Anna's son, Mike, I met online, and I even met my boyfriend online. And I joined the university e-sports team, which is the online gaming society, and made a lot of friends through that. I think one thing I would say is that I'm terrible at responding to messages. So maybe if you're trying to maintain a friendship, just keep an eye on how long you're ignoring people. Thank you, Anita. So we just got to finish off this really informative podcast. And I would like to ask you both, if you had three key takeaway messages to preparing for big change, what would that be? If we start with you, Anita, please. I would say, plan in advance as much as you can. Build a support system that you can fall back on and never be too afraid to ask for help because you can never ask for too much help. Thank you. Anna? I would say, recognize that adjustments in routine take time to get used to. So just be ready that it's going to be challenging. Give yourself time. Remember that you are entitled to help. And same message as Anita, ask for support. You can never ask for help too many times. Explain what you need. Learn what you need and then communicate and teach the people around you about what support you need. Thank you very much both for joining us for this fantastic podcast. Once again, our thanks go to Clinical Partners for supporting this ADHD podcast series. With the UK's largest network of senior mental health professionals, Clinical Partners can help ensure your child has fast-tracked the right diagnosis and optimized treatment plan. For further information and advice for families and carers, search for Clinical Partners ADHD or visit ww.clinical-partners.co.uk. For more details on Ruth Pearce, please visit the ACAMH website, www.acamh.org, and twitter, @acamh, A-C-A-M-H. And don't forget to follow us on your preferred streaming platform. Let us know if you enjoyed the podcast with a rating or review and do share with friends and colleagues. 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