Navigating AuDHD, chronic illness and self-advocacy with Saffron Canny-Smith

Laetitia: Welcome to Neurodivergent Pulse, where we explore the often misunderstood world of neurodivergence with experts, parents, teachers, and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host, Laetitia Andrac, AI expert, neurodivergent mum, and founder of Understanding Zoe.

Laetitia: This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was, and always will be Aboriginal land.

Laetitia: Hello, Saffron. Welcome to the Neurodivergent Pulse podcast.

Saffron: Thank you so much for having me on. I'm really excited to be able to share my experience with everyone.

Laetitia: And I'm sure our listener will love to hear from you. I have been loving learning more about your own lived experience, and I'm very grateful that you said yes for this interview. So you hold at once multiple part of self. You are an AuDHDer, you have chronic illness, you have a writing practice, and you have a real gift, I find, for naming things plainly, which I really appreciate in your content.

Laetitia: So before we get into any of it, I would love to hear how you came to share your lived experience so openly. Was there a moment or realisation that made you think, "This is worth saying out loud"?

Saffron: Yeah. So it was... There are a couple of moments, I'd say, for that. Around April last year, I got my diagnosis for autism.

Saffron: I'd already been diagnosed with ADHD at that point. But after my autism diagnosis, it had come about kind of quickly and suddenly, so I hadn't expected it, and I felt like I suddenly thrown in the deep end and had to learn lots. And I wanted to learn so I could accommodate myself and figure out strategies and why I am the way I am.

Saffron: And so I was reading heaps, which is my favourite way to learn, and at some point, I just thought, like, "Eh, what happens if I just share this, like, online? Just share what I'm learning about myself?" And I did, and I soon found that actually there's a massive community online. It was really lovely to get pulled into that.

Saffron: Around the same, or a couple of months before my autism diagnosis, I had become sick with ME/CFS. I'd had it as a teenager, but I actually went through a period of three years of, like, recovery or remission. So I was sick again, and I was a little bit in denial at the start, so I mostly focused on autism stuff and sharing.

Saffron: But when I was a teenager and I was sick and I went into that period of recovery or remission, I made a promise to myself that if I ever became sick again, I was not allowed to hide it and pretend to be fine. I had to rest if I needed to and ask for help and advocate for myself, because I did not do any of those things when I was younger.

Saffron: And when I did become sick again, there was a moment of, "Oh no, now I actually have to do all those promises." But in doing those promises, it ended up also becoming a part of my content and sharing my experiences, and also sharing the side of, like, chronic illness alongside what it's like being autistic.

Laetitia: Thank you for holding your promise and sharing your full self. I really appreciate that because it takes courage, for sure. Very inspiring. Thank you. And so rather than asking you a bit more about the theory behind your different assessment, I would love for you to take us through an ordinary afternoon where you felt both of those identity pulling you in different direction, whether it's the ADHD energy, the autistic traits, or the ME/CFS fatigue. Like, what does that look like? And you can share with us a scene or an example, whatever help our listeners to understand the reality.

Saffron: Yeah. They're always all going on at the same time in different levels for each thing. And it's really interesting to see how they work or don't work together. I know with, like, ADHD, I'm often feeling like I'm seeking stimulation and something to do, but I have to be careful because I need to rest, and if I overdo it, if I get sucked into that, it just comes with consequences later on, which is, like, my body forcing rest, which is way less enjoyable than just choosing to have some myself.

Saffron: So that's always a fine balance, but I've tried to make it so, so long as I stay on top of rest, I can actually do enjoyable things whilst resting. So reading, which is something I love, I can write and rest. I can write, like... I mean, we're doing this interview. If you're watching the video, you can see I'm actually lying in bed.

Saffron: I do all of my writing, all of my work from lying in bed, and it's still mentally stimulating, even if not physically. So finding little workarounds like that to try and keep both things happy. It's a bit harder with autism, just because I feel like rather than being conflicting, sometimes if I'm in a flare up of chronic illness symptoms, it increases my sensory sensitivities.

Saffron: In my autism, and they can kind of end up snowballing and just making a bad situation really, really bad. And I can find that sometimes happens if I'm in a big flare up, feeling really sick, sensory sensitivities go up, and then it just leads to, like, increased meltdowns. But then, of course, meltdowns use so much energy, and that just makes me sicker and more fatigued.

Saffron: But then because I'm more fatigued and more sick, it increases my sensory sensitivities again and can trigger more. And it can be hard sometimes to sort of stop and get out of that cycle. And yeah, unfortunately it's hard once I'm in it, but just trying to preemptively rest and plan, and also lean into sensory sensitivities has been a big thing.

Saffron: Like, if it's dinner time and I only feel like I can eat bread and butter, then so be it. Like, I just don't push it, and if I'm wearing clothing and it suddenly all feels horrible and itchy, just change clothes and put on whatever, even if it looks funny or whatever. But leaning into that has been something where I'm able to kind of help both those parts of myself and not let it get into that dreadful cycle.

Laetitia: I love that. I love that sense of giving yourself permission to reduce demand and building that beautiful awareness into your life so that you prevent this snowball effect, as you said, to happen. And I wish I was wiser because I guess for me it's often I get stuck into this snowball effect and I'm like, "Oh my gosh." And it's actually taking more energy to get out than to prevent...

Saffron: It does.

Laetitia: ...it from happening, right?

Saffron: Yeah, and I think unfortunately, like, I've only become wiser and better at that because I've gone through years of the bad side. And I think that's one of the only ways to find the strategies and things that work for you.

Saffron: You can learn and you can read, and that definitely is helpful. But sometimes you just have to do all the worst things, feel terrible, and then realise that actually you need to shift your lifestyle.

Laetitia: Completely. Completely. Which is a beautiful segue to my next question, which is about all the language around chronic illness, and honestly also being an athlete, like, coming from the athletic world for you, it's all about pushing through and managing rather than, you know, really acknowledging.

Laetitia: And we know that this is unhelpful and harmful, as you've shared. So what does pushing through actually cost the person living it when you're an athlete and you're going through that? And what opens up in the end when you start listening like you've been doing lately?

Saffron: Yeah. So when I was a teenager, I was in, and sick, I was in my last few years of high school, and it was just really, really bad. Just a really bad period of my life. I was in denial about being sick, so I would, I didn't like people to know that I was sick, so I would work really hard to pretend that I wasn't. I thought I could pretend it away, so I would pretend to myself.

Saffron: And then I was doing my final years of school, so the pressure from school meant that any time I could go to school, I was there. And it wasn't a lot, admittedly. It was mostly half days, and I think my attendance was, like, 50 or 60%, but that was, like, the maximum, and it was an awful experience. I spent that whole time either at school pushing through, pretending so much, or at home so sick that I couldn't read a book.

Saffron: And, like, I've mentioned briefly, but reading is something I really love, and so the kind of rest I was having was not enjoyable. It was just crashing and burning, not being able to pay attention to a movie or anything. And it was just such an awful state to be in, that sort of flip flop between pretend everything's fine, push yourself, crash.

Saffron: And I've realised this time around with being sick that actually life is way more enjoyable when you accommodate your illness and just accept that you can hate it, but it's there, and there are things you can do. And so I've become a lot more regimented with rest and planning my days, my weeks around rest.

Saffron: Even today, today I have a few medical appointments which all sort of landed on the same day and then this, but I've managed to schedule them all with a few hours in between so that any time I'm not at one of those appointments, I'm just gonna be resting and getting solid extra energy built up as much as I can.

Saffron: And another thing I've found really big for me is I force myself to have an afternoon nap or rest every day. I'm not a napper, so mostly it's just lying down pretending to be asleep for an hour or so. But it has the same effect. It's just that quality rest. And even though, like, I've found some days I think I don't need it, and I just decide, eh, like, I won't bother, and I end up getting to the evening and my body just forces me into that rest.

Saffron: And again, the not very nice kind of rest. So I've just found having those regimented things in to try and stop that, like, push and crash cycle really, really helps. And I think also a big part of that for outside of resting and just existing, in public and in life is by accepting I'm disabled, I have a chronic illness, I have been able to become more aware of accessibility and access needs, and I've also realised that I'm allowed to have access needs.

Saffron: They are made for people like me. There's no level of disabled or special sticker you need to be able to say, "These are my access needs." So I have, it's a process. You definitely build up confidence the more you try, but I try to be firm with my access needs when I go places. So if a friend wants to catch up, I will say like, "I'd love to catch up.

Saffron: Look, today, can we just sit in bed together and colour in?" Like, I have one friend who's so accommodating, and she'll... On my bad days, she literally comes over with coffee and pastries, and we just sit in bed and eat pastries. But then outside places, you know, if I get invited to an event or something, or there's a...

Saffron: They have a section for access needs, or even if not, I have an audition for something soon on the weekend, and there was no option or, like, what are your access needs? It wasn't asked. But in responding to the audition, I said, "I'll be there. These are my access needs," and then just listed. And not the... You know, I list that I have a mobility aid.

Saffron: That's kind of the obvious. But also things... Like, access needs can also be things like I need frequent breaks, like five minutes an hour at least. I need an extra chair to put my legs up on. I need a space that's quiet that I can go to if necessary. Those are all very valid access needs. They might not be the typical known ones, but I think seeing myself as disabled and having rights and being able to share my access needs and make it known has helped me just little things to try and prevent that crashing cycle and just keep consistent energy because life is so much more enjoyable when you can keep that consistent energy as much as possible.

Laetitia: Thank you for sharing that. And it took me a very long time to actually step into that space of self-advocacy and asking for what I need, even wearing my sunflower lanyard when, you know, I am in public spaces and so on. I know that for a long time I had this internalised ableism, being like, "You can do it without it."

Laetitia: But then I would have a big meltdown at the airport, which happened a few years ago. And then I was like, "Okay, enough is enough. You need to just wear it and say what you need." And when you're checking in, just when they offer, rather than being like, "Nope, I'm fine," no, just ask for a room, like, I'm very light sensitive and noise sensitive, so I can wear the noise cancelling headphone and I can wear the sunglasses.

Laetitia: But sometime at the airport, you know, they ask you to remove your glasses and things. So I'm just now getting better and better. It's so inspiring. I really appreciate you for sharing this. Really, really good.

Saffron: Yeah. Need to go next level. It's such a process. And I think...

Laetitia: It is.

Saffron: I know for me a big part of being able to have that confidence to put my foot down and, like you said, say that, "Actually, I need these things," for me came with accepting, like, my disabled identity.

Saffron: Just, you know, I had internalised ableism too, a lot, but I also hadn't really stopped to think about the word disabled, and it was kind of... I mean, for me, I got my autism diagnosis around the same time I got sick again, so it was, like, both things at once. But when that happened, I started to think and I was like, "Okay, well," like, it was easier for autism because I was familiar that that was labelled as a disability, whereas chronic illness is, like, a weird grey area sometimes.

Saffron: But I accepted, like, A, the word disabled. Like, think about it. Does my chronic illness, is it disabling in my life? And I was like, "Well, yeah, obviously." And I was like, "Okay, well, that makes sense then. I'm disabled because this chronic illness is disabling." Right. It's in the word. And I think that was just where things started to click and I was like, "Actually, let me look into this disabled thing."

Saffron: And learnt that, like, I have rights, I have access needs, I can share them, I can put my foot down. And sometimes just using that word, even in public, I think people won't always take you as seriously. It's wrong, but if you say, "I'm autistic," or, "I have a chronic illness," they won't always take it as seriously, whereas if you just say, "I'm disabled," and you don't disclose what, they're more likely to.

Saffron: It's very wrong, but, that's why I think accepting that term was really helpful for me.

Laetitia: Completely. Completely. I totally appreciate that, how the society is disabling us and maybe when you're at home and, you know, you're really conscious about making a space that is nurturing, you don't feel as much disabled, but actually being out at an airport or taking a train or driving or having to interact with random people this is a moment where you're like, "Oh, I'm actually really disabled by all of this," which is really the social model of disability.

Laetitia: So thank you for sharing that. And I would love to double click on the athlete's identities that you had for quite some time and what do you wish people in that space or people who surrounded you at that time would understand, and what is the cost of letting go some time of a part of ourselves to fully embrace what we need?

Laetitia: I would love for you to share that because we all have a story of something we had to let go, we wish people understood better about ourselves. So would you mind sharing a bit more about this?

Saffron: Yeah. So I think, to anyone listening who has a passion for sport and moving their body will understand that sport can be a really big part of our identities.

Saffron: I know that made up so much of my identity, being an athlete. It felt like it was my whole life for a lot of parts of my life. And not being able to engage with my sport, I haven't been able to skate in many months now, but before then I was able to do a little bit occasionally. But even at that reduced level, you suddenly feel like you've just lost a huge chunk of yourself.

Saffron: And there's a lot of grief that comes with it. There's a lot of grief in any sort of acquired disability or in terms of neurodivergent conditions if you find out later in life, there's grief that comes with that. And it was just another layer of grief, this huge chunk of my identity in sport that I feel like I lost.

Saffron: Thankfully, I do actually go to the gym twice a week now. I go to a really wonderful gym that helps me adapt everything, and I work with an exercise physiologist, so I'm still able, I found another way to connect with that identity. But, because it is such an identity, you don't just lose the exercise part, you really lose a lot more.

Saffron: You lose, like, the community, the sense of routine that the sport gave you. And you lose the people as well, which has been the hardest thing for me. I remember I have one close friend from skating who is really wonderful, and I see him outside of skating now. But other than him, I didn't skate for about five months straight, and I had one person message me to ask, "How are you?"

Saffron: I thought at skating that I had so many friends, and they were friends, but once things got hard, they decided it was too hard for them too. Yeah, and it's really hard to be on the end of that. And I think if you're in sport and there's someone who is disappearing from the sport for whatever reason, it could be mental health reasons, it could be some physical health, whatever, it's a big thing.

Saffron: I mean, athletes who get injured lose that. Even if it's a temporary injury, it's like a massive part of them to lose even temporarily. And so it's really important, I think, to, if you love someone, check in with them. Find a way to keep your relationship going that's not connected to that sport. Because, yeah, it's really highlighted some hard truths for me, I think, losing that sport.

Saffron: And on top of that, like talking about the athlete body as well, I've had sort of an extra layer of grief of losing the muscular body that I worked so hard for, and it took me many years to love that body, but I'd gotten to the point where I loved my muscles, and I was very happy in my self-image.

Saffron: And I know for me at the moment, I've been losing weight the last year, and to visually see those parts of me go has been very hard alongside the physical capacity to do what I used to do. I used to train about three hours a day, so it's very much going from one extreme to the other.

Saffron: And there's so much grief associated with it. So yeah, I just really think if you're in a position that someone else in your sporting community is disappearing, is facing difficulties, that's your moment where you can step in and be there for them, even if it's just to listen to them complain or cry or whatever.

Saffron: Even if it's just a message to say, "Hey, I haven't seen you for ages. Just want you to know I'm thinking of you." Like, it doesn't have to be big. But just those little moments of care, I think go a long way.

Laetitia: So well said. So well said. Before I let you go, I just have another question for you, which is about one moment where you've witnessed the care and the genuine support, and you felt you belonged as an ADHDer and chronically ill person, and what made it possible. If you'd like to share with us a message of hope.

Saffron: Yeah. I think, sort of linking back to what I said previously, chronic illness and disability really shows who your friends are in quite the hard way. But as much as you lose those people who don't put in the effort, it can bring out the best in some other people.

Saffron: And I have the most wonderful group of close friends who are so accommodating in everything. Like, my friend who'll come over with coffee and pastries, and we just chat and eat pastries in bed. I have friends who will help me get places, drive me places if I need. Friends who, when I, like, if we're going out somewhere and they pick me up in their car, as soon as I get near the car, they'll race out and help put whatever mobility aids away, carry things for me, friends who check in, friends who work to understand what my diagnosis is and what it means to me.

Saffron: It goes a long way when someone just does a quick Google search or asks you some questions about how it changes you and how you feel about it. One of my closest friends, when we went to high school together, for literally three years, doctors wouldn't diagnose me with ME/CFS. They, I had many doctors tell me they thought I had it, but, like, none of them really wanted to put their name to that.

Saffron: It made it very difficult for schooling. But early on in that, before any doctor had mentioned ME/CFS, one of my friends came up to me at school, and she'd actually been unbeknown to me, but doing research in her spare time, and she came up to me and she said, "Look, I think you have this thing called ME/CFS.

Saffron: I've been trying to figure out what it is that you have and reading up on things, and I need you to go home and look at this thing because I really see it in you and I think it matches." And literally no doctor had done that for me. I had not asked her. I didn't have the energy to do that myself. I was too tired.

Saffron: But she'd seen, like, "Hey, here's my friend. She's struggling. No doctor's helping her. She can't do this. I'm going to." And just to do that, and just to bring it up to me, it just showed straightaway, like these are the right kind of friends. And so I think, yeah, I have a solid core group of friends, and all of these struggles have just shown how amazing they are.

Saffron: And I think anyone listening who doesn't have those people in their life yet, I want you to know that they exist, and you deserve them. You don't need to settle for people who won't be accommodating, who won't meet your access needs, who find your disability a nuisance. There are amazing people out there, and you deserve them, and you will get them one day.

Saffron: So don't settle, because it really shows.

Laetitia: That is a beautiful way to close this interview. Don't settle. You deserve better. And that's so true, and how many time we tend to settle, being like, "Oh, maybe that's how it's meant to be." So thank you for leading the way for us. So for anyone who listen to this interview, and they wanna follow your work, they wanna be part of your communities, they wanna access some of your writing and musing, how can they connect with you?

Saffron: Yeah. Well, I'd love anyone who wants to join my communities. I'm most active on Instagram, which is neurosparklysaffy is my username, but I also do have neurosparklysaffy as my TikTok username, less uploads on there. And also YouTube, which I do have some long-form YouTube videos as well that sort of deep dive on my experiences and thoughts.

Saffron: And then in terms of writing, I have my blog, which is neurosparklysaffy.com. And also, I recently launched my own designs of merch, which is really, really exciting. I'm actually wearing the jumper. But it's just a fun little design that says, "Autism causes vaccines," because...

Laetitia: I love it...

Saffron: I think it's, like, really funny and just catches people as their brain processes, and also a lot more factually correct than the other way around.

Saffron: Yep. So if you would like a jumper or a T shirt, I have them at neurosparklysaffy.theprintbar.com.

Laetitia: Thank you. Thank you so much, Saffron, for joining us today and leading by example. It was an absolute delight to chat with you.

Saffron: Thank you so much for having me and this opportunity, and everything you do. It's really lovely to have this community where everyone works to lift up each other and help each other, and it goes every way.

Saffron: So it was really appreciated, the work you do.

Laetitia: Oh, thank you. Likewise. Thank you, thank you. And if everyone is listening to this, please go and check out to Saffron website and her merch, and leave a review on this podcast. It will help us find new ears and new hearts. Thank you so much. See you soon, Saffron.

Saffron: Thank you.

Laetitia: Welcome to another Pulse from Zoe on the Neurodivergent Pulse podcast. So Zoe, I'm curious, how does it feel for you when there is lots of demands, people are asking you to do lots of different things?

Zoe: It feels very annoying, especially when I wanna do something else, like I'm a little tired or I want to read a book.

Laetitia: And what is helping you when there is so many demands to reopen your window? You know how we talk about opening your window? What is helping you open again your window after all this?

Zoe: Just reading a book helps and seeing, well, a therapy dog or any animals. I really like animals.

Laetitia: Can you give us an example of when you go and see therapy dogs?

Zoe: Well, I don't usually go and see therapy dogs, but I do have a cute little dog at home called Cookie.

Laetitia: Yes. You like that.

Zoe: Yeah.

Laetitia: Thank you so much, Zoe, for joining this Pulse.

Zoe: Thank you. Bye.

Laetitia: Bye. That's a wrap for Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it. You can learn more about our platform at understandingzoe.com. Thanks for listening.