ADHDifference

S2E20: Young Neurodiversity Champions Advocating for Change + guest Lily Doolan

• Julie Legg • Season 2 • Episode 20

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Julie Legg chats with 19-year-old neurodiversity advocate Lily Doolan, recently elected CEO of the Young Neurodiversity Champions of New Zealand. Diagnosed with ADHD at 17, Lily shares her journey from being misunderstood at school to finding clarity, purpose, and passion as a youth leader and university student. 

Lily opens up about the impact of diagnosis, burnout, education reform, and the importance of filling your cup. With refreshing honesty, she challenges the narrative around “naughty kids,” and champions inclusion, compassion, and spaces where neurodivergent voices are truly heard.

Key Points from the Episode

  • What it felt like growing up undiagnosed with ADHD
  • The emotional impact receiving a late teen diagnosis
  • How medication and understanding changed Lily’s academic experience
  • Life as a university student and managing executive dysfunction
  • Stepping into leadership as CEO of the Young Neurodiversity Champions
  • How to create more neuro-inclusive schools
  • The power of routines and checklists for energy regulation
  • Burnout warning signs and what helped Lily recover
  • A message of hope for undiagnosed or struggling young people

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ℹ️ DISCLAIMER: This podcast is for informational purposes only. The views expressed are those of the guests and do not necessarily reflect those of the host or ADHDifference. Read More

JULIE: Welcome to Season 2 of ADHDifference. I'm your host, Julie Legg, ADHD advocate, author of The Missing Piece: A Woman's Guide to Understanding, Diagnosing, and Living with ADHD, and an unapologetic doer of many things. This season, we're turning up the volume with a global lineup of brilliant guests bringing their lived experiences, insights, research, strategies, and resources. And of course, along with a healthy dose of humour and humility. Whether you're neurodivergent yourself or just curious, there's something here for every curious brain. Let's dive in. Today, I'm joined by Lily Doolan, a 19-year-old neurodiversity advocate who was diagnosed with ADHD at the age of 17. She is heavily involved with the Young Neurodiversity Champions and has just been elected as the new CEO. She is a passionate change maker who is committed to creating a positive and inclusive future where all people are seen and heard. Welcome Lily to the show. It's awesome to have you here. 

LILY: Hello. I am so beyond excited to do this. I've been listening to your podcast since it started and it is, yeah, it's been such a relatable and fun podcast to listen to and I'm just excited that I'm finally able to come on here and speak my word. 

JULIE: Oh, that's fabulous. Yay. Great. Well, you've spoken about your journey from being that bold, confident child to later realizing how misunderstood your differences actually were. Can you take us back to that time and share what it was like growing up undiagnosed? 

LILY: Yes. Growing up undiagnosed was a challenge. At the time, I didn't realize it was a challenge. I thought just the world wasn't on my side, but you know, it was it was a challenge. As a child, I quite often struggled making friends. I was often seen as that kid who was the naughty kid or the kid who does silly things and gets in trouble with the teacher or speaks too loud in class. And I thought that was normal. I thought everybody just went about their day just doing what they wanted to and didn't really care about the consequences of actions. But nonetheless, I had the most amazing childhood. I received the greatest care and support from my parents and my family and I am so blessed to have received that. Yeah, during my primary school years, yeah, it was a very much a struggle of trying to keep friends and not getting in kind of drama with people. I always found myself in the middle of situations that I didn't even want to be in. Yeah, and that kind of transformed into quite bad anxiety as I went into high school. So I was only, I was only diagnosed with ADHD in my last year of high school which meant that yeah, I went through every single year of my schooling undiagnosed. Yeah, it really kind of stuck out to me in yeah, high school when I was struggling with really bad anxiety that maybe something would something else would be going on. Yeah, I was both that loud and like loud person and that very quiet person depending on the environment I was in. I could never stay on track with tasks. I was often that person who was up till midnight when the assignment was due at 9:00 p.m. and mum's banging on my door telling me to go to sleep. One big kind of scenario that happened was during lockdown. I was actually on TikTok and I was having all of these videos pop up and they were the "Put your finger down if you have this," or stuff like that. And I was reading through quite a few of the ADHD ones and I was like huh, like maybe, maybe something else is going on here. So yeah, I mean growing up it was a struggle, but when I started to realize that maybe there was actually an underlying reason for all of my struggles in the past, yeah, made it made a huge impact on my life. Yeah. 

JULIE: Wow. Wow. That's awesome to know, isn't it? And you had mentioned that it was your mum who ultimately helped you get recognized and referred for an assessment after all those years of feeling dismissed and misunderstood. What was it like to finally receive your diagnosis and how did things change for you emotionally and practically? 

LILY: Yeah, so I just want to give a huge shout out to my mum. She has been there since day one. She has always listened to me. She's never been frustrated and it was a very challenging time for her as well with a child who had behavioural issues and had all these things going on that we couldn't explain. Yeah, she has bear the brunt of it. I can tell you that. Yeah, being diagnosed, it was such a relief, but also there was a there was a flurry of kind of a mix of anger, anxiety, and also a lot of regret. I felt a lot of regret towards situations that had happened in the past where my ADHD was at the forefront, but I didn't know that and I didn't know it was ADHD. Yeah, I was very angry at the school system, which has later driven into a passion. I was, yeah, very, very angry at the fact that nobody noticed. Nobody saw the struggle or the behavioural issues and said anything or brought it up to my parents. Like my parents thought I was just a naughty kid, but that's not the case. Like that's and it's not the case for a lot of children out there. Practically my life changed dramatically when I went on medication. I managed to find a routine. I managed to be able to focus and it was really, really important when I got diagnosed because I was about to go into my last year of exams, and that was obviously a huge time being in year 13. Yeah, I was able to find a way to advocate for myself as well. I built up that strength in being like, well, now I know what's happening, so I'm going to tell people and make people aware and make sure that I am able to get the experience from something that I want to get while also making sure that other people are comfortable with my situation and so that everybody is comfortable all together. Yeah. It really helped me at university. I was able to communicate with my lecturers and tutors a lot better. Obviously there was some communication struggles in some places, but they yeah, they helped me so much more than I was expecting going into university. 

JULIE: That's amazing. And being able to share that is so empowering, isn't it? When you understand it yourself and you can help others help them to understand as well. So you're a student at Victoria. 

LILY: Yes, I am studying architecture. So I am in my second year of landscape architecture. Yeah. 

JULIE: As well as how you coped with studying with medication but also how that environment may have affected you, also I want to talk about the Young Neurodiversity Champions because that's a very interesting group reshaping how neurodiversity is understood in New Zealand. So, can you tell me more about both in two parts, about your study and also about your Young Neurodiversity Champions? 

LILY: Of course. So, my study going into it, I was very anxious. I didn't really know what to expect. As a neurodivergent person, you go into these situations and you kind of just have to wait to see how you'll fit in. That's a lot of how I felt. I was just like, I'm just going to have to go and give it a go and see if I fit in. And for me, halls and all of that sort of side of things was definitely not for me. I learned a lot about myself in those in those six months that I was in halls. Yeah but study it was definitely a challenge. I found it very hard to comprehend the intensity of tasks and keep on track. I'm sure as ADHD people we all struggle to keep on track but when it's something that you're paying for you're like wow I really need to try and help myself to get through this. And I really, really struggled with that at university even with medication but it definitely helped my rejection sensitivity dysphoria. So I found that I was a little bit more confident going into class. I didn't keep my head down. I tried to make friends as best as I could. I tried to talk to people and it just didn't work out for me. But hopefully my gap year this year will bring back some of my spark and I'll be able to get straight back into it in 2027. Yeah, I'll jump into Young Neurodiversity Champions now. So I absolutely love this group. I have actually just been named the new CEO for 2026. I am... [Congratulations.] Thank you so much. I am so beyond excited. So we are a group of 15 to 20 young neurodivergent people. We are all from New Zealand, all we are based anywhere in the country. There is people all the way down in Dunedin all the way up to Auckland and I think there's one person in the top of the North Island. Not too sure. But yeah, we advocate for change in all sectors of the industries. We want to see a real change in schools for children. We want to see schools become more neuro-inclusive, which is a word that I love. I want to see a change in access to diagnosis and being able to make it easier for people to become diagnosed with neurodivergent conditions. Yeah, we have not done too much this year. We've been a little bit stuffy with all the budgets and everything like that and funding. So, it's been quite sad that we haven't been able to get out there as much as we wanted to. But I'm hoping to bring some more new exciting stuff into 2026 and really, really make our mark in the neurodiversity space. 

JULIE: That is brilliant. And Lily, how did you get into that space? 

LILY: Yes. So after I was diagnosed with ADHD, my mum, she's a learning support coordinator at some schools in Hawkes Bay and so she works with neurodivergent children, children with special needs and developmental delays as well. She is a rock star. She's amazing. She actually sent me an email that she had received from the Young Neurodiversity Champions that they had applications open and I applied and I got in. It's the coolest group I've ever been in and they really make me feel welcome and supported and I think everybody should be able to feel that way. And yeah, it's just such a cool community. It's wonderful. 

JULIE: Yay. Yay, mum. Good on her. Good on you. You have said that every student deserves to be seen and understood and supported in their journey through education. What are the some of the biggest changes you believe schools need to make so that neurodivergent students can truly thrive? 

LILY: Yeah. I think that the biggest parts to changing the school system is education, awareness, support, and advocation. They are my four main points that I really, really push for in schools. So, I want everybody to be educated about neurodiversity and neurodivergent conditions such as ADHD, ASD, dyslexia, dysgraphia, everything under the sun. I want to see courses and keynote speakers and easy activities for kids to do that teach them about neurodiversity while making it positive and in a really fun way. I think that also raising awareness, like advocating for yourself, standing up and saying, "I have ADHD. I have autism," and making sure that people are able to accept it. And if they can't, then having that communication about that and trying to work out ways that they can bring that into the classroom and say that we're actually all different. None of us are the same and none of us have the same brain. Yeah, I would really like to see more support for students and I think everybody sees the need for that as well, but it's really on my forefront making sure that people who are neurodivergent, students who are neurodivergent are able to go into the classroom and feel like they have somebody there for them. I really struggled with that at primary school and I managed to find a teacher at high school. Shout out Mrs. Jackson. She's probably not listening. She... You'd be surprised. You'd be surprised. She was that teacher whose door was always open. She never ever criticized me for coming in and saying what I wanted to say. She would simply just sit there and listen. And I think having that type of relationship with a student is beyond beneficial for them. She's still making an impact on my life today and I've been out of school almost two and a half years now. So I think that making sure that you are able as a teacher, as an educator, even as a support staff, as an office worker at school, making sure that you have that energy where people can come in to your space and express their feelings and express their identity and their individuality. I think that is the hugest change that could have a real massive impact on people and being seen and heard. 

JULIE: Isn't that what we all want? And particularly as some of our challenges are internalized and aren't always external for people to pick up on too. So to be able to express your inner thoughts and be heard, wonderful. Thank you. Navigating study, advocacy, and life with ADHD and takes a lot of self-awareness and balance. What's something that helps you manage your energy and to stay organized or just take care of your well-being on a day-to-day basis? 

LILY: So, I am a sucker for a routine or a checklist. I often get up in the morning and I do the exact same steps in the exact same way every single morning. But it is so beneficial for me because I can see my next steps and I think that is the huge part of having ADHD is you get into these situations and you're like well, what do I do next? So I think routines and checklists are definitely the thing that helped me at university staying on task. Also balance. I really struggled with it at university because of the calibre of how much I was studying. I yeah I really did not have very much free time but I really have to find things that fill my cup. If my cup isn't at least half full I really struggle to carry on every day. Yeah so I think that taking care of yourself in some way even if it's just a 5 minute walk outside even, if it's just looking out the window while you have a coffee you know, just having that little bit of time for yourself every single day. No phones, just pure in yourself, in your body is definitely the biggest point of where it can make a real benefit to your life. I really like going to the gym. The gym is where I call it my therapy. Yeah, I like feeling strong and feeling a sense of achievement from making myself healthier and building my health up and yeah, just ultimately becoming the person I want to be. Yeah, and I think a lot of taking care of yourself and going through day-to-day life is also your mindset. I think a really important mindset that I try to have every single day of my life is that I'm a person. I'm allowed to take up space and I also have feelings. And if people can't accept my feelings, then that's okay. But that's not going to discourage me from carrying on. And I think as a neurodivergent person, we quite often feel like we shouldn't take up space and that we should just let the world kind of pass us by and we'll go on our own track. But having space and standing up and being like I am here. I am, I have ADHD. I am this person who has an amazing, amazing thing behind them is yeah, it's so beneficial. I found it as a first year student in university, I definitely found that I struggled to take up space. And then when I realized that I was doing that, I was like, "No, I need to turn around and stand up and have fun, have the experience that everybody else is having." Like just because I have ADHD doesn't mean that I'm weird, I'm different. Like it... I'm the same as everyone else. Just my brain I like to say, my brain's a little bit cooler. But yeah. 

JULIE: That's wonderful. I love taking up space intentionally. I think that's wonderful. Thank you for sharing that. 

LILY: Yeah, I think it's just really important to like make sure that people aren't just existing. Like you should be thriving in a space. And I think it that's what I've kind of realized over this year being at university is that it I was existing and I was surviving. I wasn't coming into a space feeling happy and really empowered to be there. I was simply just there because I had to be. And if that is you in that position, like it's really hard to get out of it unless you can find, yeah, unless you can find your own way to then it's really, really hard. And quite often people cannot find their own way to do it. Burnout is a real thing. Do not ignore burnout. I was severely burnt out this year and I ignored it. And now I've come to the point where I'm like, I wasn't taking care of myself in a way that I should have been. And yeah, just take time during the day. Just have a break. Even just close your eyes for 5 minutes, but take care of yourself. Find things to do that can help you feel better because burnout and stress just wrecks your mental health if you're not, yeah, if you don't stop it immediately. And it is very hard to get out of the burnout pit once you're in it if you are already or still doing the activity that put you in the burnout pit in the first place. So yeah, don't be afraid to take breaks. That's the biggest one. Yeah. 

JULIE: Lily, what are the warning signs of burnout? What were they like for you? 

LILY: I was extremely exhausted after a class. It may have only been 2 hours, but I would come home and sleep. I found it very hard as in front in terms of executive functioning. I found it so hard to start tasks. I could complete tasks, but if they weren't started and I didn't know how to start them, they were off to the side. They weren't happening for a very long time. Yeah, I quite often struggled to get out of bed in the morning. And people see that as a common sign of depression, but also I see it as a sign of burnout. As an ADHD person, quite often you have that one space in your house where you go to sit and do all your stuff. And my bed was my place in Wellington. And I spent way too much time in my bed in Wellington. So yeah, just making sure that you're getting up and getting out is the biggest thing. Don't let yourself fall into these habits of lying in bed or sitting there on your phone. Like try and mix up your days. 

JULIE: Lily, my last question for you was going to be around other young people who might be where you once were in late high school, feeling different and misunderstood, or still wanting to be recognized. What would you most want them to hear? 

LILY: Yeah. It is hard. I know it is hard. It is so hard when you can't see the light at the end of the tunnel. And sometimes that light at the end of the tunnel doesn't come till the day before. But just get up, get yourself out there and keep going. Do not stop. The grind may feel like it wants to stop, but don't let it. Just keep going. I really struggled with this at high school, and I got up and just went every single day. I didn't stop because I wanted to make it through and I wanted to see that light at the end of the tunnel. And it may seem like it's hard work right now, but everybody says this, it pays off, but it truly does. It is so amazing to see the growth that has come over the past few years for me. And I think that other people just need to hear that it will all be okay. You will get out of it and you will become the person you want to become. As before, take up space. Make sure that you are heard and seen and accepted in the place that you are being. And if it's not doing it for you, then get out. Go find something else. Yeah. Fill your cup. That's my biggest thing. 

JULIE: Oh, that's such wise words. Thank you so much, Lily. You've been a delight to chat with today. So, thank you so much for your insights and sharing your journey and wishing you all the very, very best for your exciting adventures ahead. 

LILY: Thank you so much. It's been such a pleasure to talk to you as well.

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Julie Legg

Host
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Jel Legg

Co-host
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Lily Doolan

Guest