The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Allie Mason – Fun and Adventure!
In the latest Middletown Podcast, we speak to Allie Mason – author, advocate and adventurer! Allie has written a book, “The Autistic Guide to Adventure”. Her book is designed to support autistic folk of all ages to take part in new activities and find fun and adventure at their own pace.
Find out more about Allie’s work here: https://alliewrote.com/
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode, I chat to Ali Mason. Ali is an autistic adventurer who's written a book that is a guide for young people who might want to get involved in active hobbies. We know that autistic young people are less likely to be involved in sport and active hobbies, so I wanted to chat to Ali about why that might be and how we can make activities more inclusive and autism affirming. I hope you enjoy our chat. Well, ali. Thank you so much for joining us on the podcast. I suppose I wanted to start by asking you to tell us a little bit about yourself thank you so much for having me.
Speaker 1:I'm absolutely thrilled to be here. So, yes, my name is Ali Ali Mason, I am a full-time copywriter and I'm also an author. I wrote the Autistic Guide to Adventure, which came out in 2023. And I'm currently writing my second book, so you know, watch this space for that one. And I was diagnosed as autistic when I was 23. So late diagnosed, but very much dived headfirst into the community once I had that.
Speaker 2:Brilliant. Well, your book I have in front of me. It is absolutely gorgeous. I really love it. And what made you want to write us?
Speaker 1:And what made you want to write us? So for me. I grew up in a really outdoorsy family and I'd always struggled to fit in With that. I'd always felt like I'd missed out on the outdoorsy gene somehow. So when I was diagnosed and I finally understood right, ok, so I've got sensory sensory issues, I struggle with social and communication issues and things like that I immediately thought this is gonna help me to understand why getting active and being outdoors was always so difficult.
Speaker 1:And as I was doing more research into that, I realized that there wasn't really a lot of information out there, um, there wasn't a lot of information that was easily accessible to the public, let's say, um, I've done a master's degree in research design, so I'm used to having to dig really deeply into different sources and things to find out what I was looking for, but not everybody has the time or the, the understanding or the literacy to do that um. So when I was doing that research to educate myself, I realized there was such a gap in the resources that were available, um, and I decided to fill it with my own writing.
Speaker 2:I'm very glad that you did, and why do you think there are so few resources about sort of those active hobbies for autistic folk?
Speaker 1:I've mulled this over quite a lot and I think, to be honest, because there's so much good stuff happening on the ground and I certainly didn't realize that before I wrote the book.
Speaker 1:It's something that I've come to know from meeting people at conferences and events or from people reaching out and saying that they've read the book.
Speaker 1:They really enjoyed it. There's actually so much happening in local communities, clubs and activity providers and that kind of thing that try to cater for the autistic community and the wider neurodivergent community, but I don't think there's a lot of spare time there to be creating the resources and to be writing the resources. So I think for me I was really fortunate because I'm not involved in that practical way you know, I'm not trained as a coach or anything like that so I had that capacity to take what people were already doing and doing really well and to put it in a format that could be kind of, you know, widely shared, like the book is um. So I think that's what I've landed on. I think it's not the fact that this information isn't out there, because it definitely is, it's just localized and it's not kind of shared at that um higher level at the moment that makes a lot of sense, and you mentioned that you got your diagnosis when you were 23, so did that kind of change how you felt about yourself?
Speaker 1:oh, a hundred percent. Like.
Speaker 1:I think it's really interesting because some people, when they get their diagnosis, it can be really difficult and really challenging for them, um, whereas for me, you know, when I opened the email and I read that you know they were saying, yes, you are autistic.
Speaker 1:I did have a massive cry because I think I had to let all of those emotions out, but at the end of the day it was just liberating because I finally understood myself. I finally understood why I felt so different from everybody else, why my experience of the world was so different from everybody else's, and I finally had the language to be able to explain that to people who didn't have the same worldview as me, who don't have that autistic neurotype. It's so challenging when you're experiencing things that a you thought everybody did, and then you learn they they don't, um, to be able to put that into words in a way that they can understand. And so I think for me, getting that diagnosis was really important and really positive, because it meant that I had a way to better connect not only with myself but with the people around me as well yeah, that makes sense and yeah, I always think that's.
Speaker 2:You know, knowledge is power. It's a cliche, but it's true and, like for myself, it absolutely changed how I felt about myself. But, as you say, it gave me that language to be able to describe and understand, because I always felt out of step. But suddenly I was like, okay, and I know why it makes sense.
Speaker 1:Yeah, all the pieces fall into place yeah, absolutely.
Speaker 2:And are there activities, then, that you really love, and what do you love about them?
Speaker 1:I am a big, big roller skating fan. So when I was a kid I really loved to skate and I think that one of the things after I got my diagnosis that I was really keen to revisit were those kind of childhood hobbies and before kind of everything else got, because I'm thinking I don't know you know how it's phrased in Ireland, but like primary school age, so you kind of you know five to ten, something like that, and how the hobbies that I had then are probably the things that truly like spoke to me to be very cliche about it, but yeah, that kind of spoke to my soul and what really resonated with me. Um, and roller skating was one of those things and I did it a lot during primary school and then didn't do it, um, during secondary school, during college, during your university, and it was only something that I really came back to as an adult once I'd had that diagnosis. Um, and being able to go back to it with the knowledge that I had meant that I was just able to embrace it on a different level. And don't get me wrong, I'm not a great roller skater like.
Speaker 1:You're never gonna see me showing up on on TikTok or Instagram reels doing fancy tricks or anything like that, but it just um, yeah, it just brings me so much joy and it's also so soothing, the feedback that I get whilst I'm roller skating. I've got a, a friend, stu, who, um, they're featured in the book for the mountain biking section and they're obsessed with mountain biking and they say that part of that obsession is the feedback from the bike and going down the hills and the lumps and the bumps and all the rest of it, and I think you get something very similar with roller skates as well. Um, so, yeah, that's my, that's my ode to roller skating.
Speaker 2:If you haven't tried it, you definitely should it's a long time since I've been skating, but I loved it. And for the same reasons, I think it's very stimmy, isn't it like it? Yeah, exactly. You know quite a few autistic people who in adulthood have gotten into it yeah for that reason, and what do you think the main barriers are for autistic folks who kind of get involved in active hobbies?
Speaker 1:I think, going back to something you mentioned earlier about knowledge being power, I think the lack of knowledge is a massive barrier understanding why our bodies work the way they do or why we feel the way we do, having the language to be able to describe that. But also, you know, we live in a world where we're connected 24 7 and we can hop on the internet and we can search for whatever we like. But if we don't know how to describe it, how are we going to search for it? You know, if you, if you want to participate in something and you're like whenever I try to do x activity, my body feels like jelly, but how do you search for that on the Internet? You know you just can't. And so I think knowledge definitely number one and then number two support. So, having people around you in those organizations you know you might be a part of a team or you might be doing something where you have a coach like you need to have the people there who understand neurodiversity, who understand what it's like to be autistic, who've had. You know they don't have to have done a degree in it, but have had a couple of hours of training into how to support autistic young people. It just makes all of the difference. Um, so that's.
Speaker 1:Number two is support, and then number three, I would say and I think the book really feeds into that is confidence. One of the reasons I wanted to write the book is to put the power back in young people's hands and say look, you can use this as a tool to advocate for yourselves, like you don't. As much as it's incredibly important to have people advocating for us, to have allies who are there to support us, um, we also need to learn how to ask for help when we need it, or to ask for certain supports to enable us to get involved with an activity. And I don't think necessarily that that confidence is very embedded in young people in the neurodivergent community at the moment. So it would be really nice to see that grow, and I think that, as it does, they'll be much more empowered and ready to get involved in those active hobbies.
Speaker 2:Absolutely. And then you mentioned your friend Stu, who's in the book, and lovely sort of stories from people who are involved in the different sorts of hobbies. Why did you want to sort of include those personal stories?
Speaker 1:those personal stories.
Speaker 1:I think it's so important to acknowledge that there are so many different experiences within the neurodivergent community because, at the end of the day, I could have done lots and lots of research and I did do lots and lots of research but I could have ended it there and just written a book based on my research and my lived experience.
Speaker 1:But the thing is there are a ton of different activities and active hobbies that either I don't do because I'm just not interested in them, or I don't do because, for me personally, my autistic traits make that activity uncomfortable or something that I don't enjoy. And I did not want the book to be homogenous in the sense that it was only my perspective, because I think that's very limiting, um, it's very egotistical, um, and it's just not helpful. So from from the get-go, when I was planning it and I was thinking about what was going to be included, I knew that I wanted to have different voices from the community and they're sharing their own lived experiences because, you know, adventure's not one size fit all, autism's not one size fit all. So, yeah, it was just non-negotiable for me, I think.
Speaker 2:Brilliant, and you mentioned then, like some of the, the things that you struggle with and that you don't find comfortable. What, what sort of things are they?
Speaker 1:I hate water with a passion, and when I say I hate it, um, I mean in the context of it touching me. Um, so I am more than happy to to go kayaking or to go rowing, like I love those activities, but anything with swimming in it or where I have to get kind of in and out of the water is just not my cup of tea, because the yeah, the sensations of going from wet skin to dry skin and back again, or it's all. It's all horrendous and awful. So, um, you know, we've got swimming in the book.
Speaker 1:There's no way I could have written about that from a positive perspective, because I do not have positive feelings towards swimming. But then I know that there are a lot of um autistic people out there who are complete water babies and who love being in the water. Um, and so you know you've got people like um Sam Holness, the triathlete, who will literally go from running to swimming to biking, all in this. Oh, I couldn't, I couldn't. I think it's incredible and I'm in absolute awe of him and everything he does, but it's not for me well, I think it just it captures the range of our community.
Speaker 2:Yes, it, it's beautiful in that sense. Definitely Exactly, and you kind of touched on this already, but I'd love to kind of dig a little bit deeper on it. You kind of, within the book, you give sort of supports for each of the activities, which is incredibly useful, I think, for anyone who's sort of thinking of getting involved in any of them. But then also it sort of speaks to that kind of advocacy side of things and sort of helping young people and supporting people to ask for the things that they might need. Was that something that was really kind of at the heart of your thinking when you're putting it together?
Speaker 1:definitely I think I wanted the book to be a resource that almost acted like a springboard. I didn't want it to be something that autistic young people read and put down and didn't think about again. I wanted it to be something that spurred them on to enact change in their own lives. So, in the sense of, I hoped that they might read some of these hobbies and activities that I've included. They might think, right, that one sounds great, you know horse riding. I've always wanted to try horse riding, but I've included. They might think, right, that one sounds great, you know horse riding.
Speaker 1:I've always wanted to try horse riding, but I've always worried about x, y and z. Well, guess what? I've addressed x, y and z. I've given you ways that you can overcome it and you can now go to your, your parent or your carer or whoever is going to be helping you to access that activity and say I'd really like to do this. I'm worried about this. But here are the ways that I think we could make it better for me.
Speaker 1:And I also think as well that you know there are some young people who might not be ready to have those conversations themselves yet, be ready to have those conversations themselves yet. But it means that if they, they can share the book with the parents and the carers and they can say why don't you have a read of this? And you can maybe get a better understanding of where I'm coming from and what I need to be able to access this activity, because I think advocacy is so powerful and certainly the difference, once I had my diagnosis, of being able to advocate for myself because I finally could make sense of everything that was going on. If I can do anything to share that feeling with others, I want to.
Speaker 2:That's amazing and I think as well. It's so powerful because I think when you're younger you don't necessarily even know what will be helpful and what support you might need. So to see lists of things that potentially could be helpful, it kind of. It sort of gives you those building blocks to try things out and go oh no, not that one, but this one works for me, and sort of take these options. I think it's just gorgeous for young people.
Speaker 1:Yeah, I think of it almost like a recipe, because at the end of the day, you know, if you think about making cookies, some people like chocolate chips, some people like raisins, some people like sprinkles, like you can choose whichever one works best for you. And if you're not sure, you can try the chocolate chip cookie and the raisin cookie and the sprinkle cookie and then you go right, okay, I hate raisins and cookies, I won't be doing that again, but I know that I'll always choose the chocolate chip from now on. And it's that idea of once you know which supports are most helpful for you, you don't have to stress about all of the others. You don't have to worry about how are people going to react to me asking for nine million different things, because at the end of the day, it never really is nine million different things, it's always just one or two that work for you that's it exactly.
Speaker 2:Yeah, I always say, it's little tweaks here and there it's, it's never sort of massive asks for people. Yeah, and then I guess on the back of that would you have any advice for, um, parents or teachers. You want to kind of try and support young people to find those activities that they might love yes, I think that you know it's it's going to be a recurring three theme through this episode.
Speaker 1:But the knowledge is power idea because I think learn as much as you can get involved in the communities of you know lived experience like if you can learn from people who are older than your child or the child that you're working with, who have lived experience of what they also live with, then that is definitely the best route, in my opinion, to getting um, kind of clued up about what's going to help. And you having that knowledge means that you can share that knowledge with the young person in your life, which is always a good thing, in my opinion but also to listen to the feedback of that young person in your life as well, I think and that sounds kind of really superficial and blasé, but what I mean is really listen so that you understand where that feedback is coming from. So you know, we were saying earlier about how different activities are going to suit different people, but activities also exist in kind of groups. So in the sense of, I know that I hate anything where I have to go from being wet to dry to wet to dry with my skin. So if I don't like swimming, don't suggest I try triathlon because it's not going to go well. But equally, if you have somebody who really enjoys the feedback from being on wheels so I really love roller skating I bet if I tried mountain biking I'd love that as well, because it's the same sense of feedback.
Speaker 1:So, yeah, kind of listen to what that what's behind what they're saying and understand the reasoning behind their feedback so that you can use that to help them narrow down what they're interested in doing, so that you can use that to help them narrow down what they're interested in doing. And again, just that sense of building confidence and empowering young people to advocate for themselves and not to be afraid to say this didn't work for me or I don't feel that I'm very good at this, but equally, on the flip side of that, to encourage them to keep doing something if they enjoy it but they're bad at it. Because, like I said, I'm never going to be a world-class roller skater, but I love it, so I'm going to keep doing it. And I think for young people they don't always have that confidence. They feel like they have to be great at something to spend time on it and the reality is you just don't, you just don't.
Speaker 2:Perfect, that's really lovely. And my very last question for you is don't you just don't perfect? That's really lovely. And my very last question for you is would you have any advice? Um, if you could go back and talk to your younger self?
Speaker 1:oh, it's such a loaded question, but it's such a good one. Um, I think when I, when I look at the book so you might have noticed that, kat, when you read it yourself that my dedication is to my younger self. So I dedicated the book for Alex. I promise it gets better, and I think that that is the first and foremost the message I'd give her, because when I was growing up and I didn't have my diagnosis outside of, you know, being outdoorsy and adventurous and active and not having access to those things because of barriers that I couldn't understand I struggled in school. I struggled with friendships, like there was a lot going on. That was really difficult for me and I just would love to go back and be like you don't need to worry, it's gonna be okay, because when you're in the midst of it, you definitely don't think it's gonna be okay. Um, so that would be one and then another.
Speaker 1:I was having to flick through the book earlier to see what words of wisdom older Ali had left in there for me, um, and I found a sentence where I'd written failing is just discovering a way to do something that doesn't work, and I was like, yes, actually that's exactly what it is, and I really resonate with that, and, despite the fact that I wrote this book years ago, it's something that I still struggle with every day, because we all have that kind of desire to be good at things.
Speaker 1:We have that desire to be oh, what's the word I'm looking for to be kind of recognised by others for being good at things, and so when we spend time on things that don't work out the way we thought, it can be really easy to think, well, I won't do that again, I won't try that again. That's clearly not for me, um, and I'm really trying very hard to get out of that mindset. So I think again, that's something I'd go back and tell my younger self. I'd be like please just fail over and over and over again, because it's just so good for building resilience, for building confidence, but also for opening you up to new opportunities, because you're not going to try new things, if you're constantly scared, they're going to go wrong, whereas if you don't mind, if they go wrong, the whole world is your oyster.
Speaker 2:Thanks so much for listening to the podcast. This is a conversation-based interview designed to stimulate thinking and hopefully, support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of Middletown Centre. If you'd like to know more about Middletown, you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism. Go easy until next time.