Wildfire Series
Welcome to Wildfire, a podcast brought to you by Ember Connect. Ember Connect is a free, digital platform for Aboriginal and Torres Strait Islander women and allies.
Wildfire Series
Bonus: We Were Diagnosed Late and Now We're Figuring It All Out
What happens when you discover your neurodivergence decades into adulthood? In this unfiltered, candid conversation, Narelle and Tess open up about receiving their diagnoses in their 40s—Narelle with ADHD and Tess with autism—and how this knowledge transformed their understanding of themselves.
From the roller coaster of emotions that followed diagnosis to the practical realities of navigating daily life with ADHD and autism, they share experiences that many late-diagnosed adults will recognize instantly. "I thought I just wasn't as smart as everybody else," Narelle reveals, discussing how her ADHD masked itself as academic struggles until she discovered that her brain simply processes information differently—sometimes even advantageously, as when her heightened awareness made her an exceptional basketball point guard.
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Speaker 2:Hiya, I'm Narelle Henry, a Noongar woman living out here in Perth in the wild wild west.
Speaker 3:Hi, I'm Tess Hayes and I am possibly the whitest woman in Australia, also living on Noongar country. Also living on Noongar country. Hey guys, after recording part two of our work episode, narelle and I left the mic on while we chatted about ADHD and autism. We were both late diagnosed Narelle with ADHD and me with autism just a few years ago and we're the lucky ones because we had the opportunity to discover our neurotypes and find ways to better support our own needs. Many women, non-binary people and people of colour are overlooked by the healthcare system or simply cannot afford the cost of a diagnosis. And then when you do receive a diagnosis, as an adult, there is very little to no support. This is a bonus uncut episode and so includes mind blanks, ums, you knows, and some swearing, but we hope it also provides community and inclusion for other neurodivergent members and allies who speak, talk and think like us. Please note this episode includes discussion of depression and suicidal ideation, so take care while listening.
Speaker 3:Look, I've got conflicting views around. When you hear people say you know, like my autism or my ADHD is a superpower, you know which is super common and you know and it's obviously meant in a very positive way getting by, you know, who are just sort of struggling to live day by day, you know, or who are going through burnout and can barely do anything, or that sort of thing. So it's like it's and it also means that it's only, I feel like it only then means that you know your autism or ADHD is worthwhile if it's productive, which just feeds back into the capitalist view that we have to be productive, you know, to be worth anything productive monetarily, I suppose, to be worthwhile. So, yeah, it's just conflicting views. But, as you were just saying, you know, like you do, you have identified ways in which your you know your own ADD has assisted you and has worked in your benefit. You know, on the basketball court.
Speaker 2:Yeah, I mean I've you know I turn, I'm 47. I think I was diagnosed about four or five years ago. So there was some grief in that, because there are some other conditions associated with ADD as well that I struggled with and I could clearly see a lot of patterns emerging, you know, a little bit later in life but really couldn't identify them and actually damaging in terms of my progress. So you know, two steps steps forward, three steps back, type behavior, um, self-sabotage, lack of belief, all of those things. And if I'd known then what I know now and how many people say that um, but that's really the whole point of um. You know going, challenges, learning and trying to figure out and navigate and Really sometimes you just think it's the only point to just figure out how to love yourself or the people.
Speaker 2:Yeah, so I think at the age of, you know, 43 or so. This is after I'd had a young one too gone through serious postnatal depression and knowing that I was, you know, depressed so deeply that it was kind of like I need to get my daughter into daycare so that I don't, so that she doesn't have to recover later down the track from being able to stay home and being the mum that she needed. I just had to get out and get going. But I realised, the more you talk about those types of things and the more you talk about with other people, you understand what they're going through and they might have sought help. And then you finally get the courage to go. You know what. I just need to figure it out and I need to go talk to somebody. And then you do, and then I guess that mixture of grief but like, oh, I'm not, I'm not a bad person. Yeah, yeah, I'm not rubbish.
Speaker 3:I'm not stupid, yep, yep, my brain just works this way. Yeah, and I think the you know the discourse that we're seeing at the moment um, you know, I mean coming out of the us with rfk jr um, announcing that he will find a cure for the autism epidemic by September. As someone myself, I was the same diagnosed autistic at age 42, 43, after a really significant burnout, you know, which stopped me from doing everything you know, from working, from following my passions, from being on the Rottnest Channel swim board, and just sort of completely broke me. And you know, and through that burnout I realised that I was autistic, took that to my GP who immediately dismissed that and was like no, no, you couldn't be. You work in communications and you know all these sorts of things. And I was like no, no, please, like, I insist, please, give me a referral because I want to talk to a psychologist about this.
Speaker 3:And lo and behold, of course you know, as soon as I showed the psychologist some notes that I had from when my eldest son was six months old and I left five pages of notes from my mum on how to look after him, which started off with we don't have much of a routine and then continued with what we do every 15, five to 15 minutes throughout the day. It's just a guy, it's just guidelines. And then, yeah, you know, looked back through lots of my stuff, you know, as lots of people do. You know, there's, I guess there's a view that people might see something on TikTok or Instagram and go, oh, I relate to that. Therefore, I'm autistic and sort of seek out a diagnosis because of I don't know why, you know, because they want attention or whatever, when nobody who's actually questioning that is going to, you know, spend $3,000 and a whole bunch of their time to get a diagnosis when there's also no supports at the other side.
Speaker 2:Anyway, but, um, I can't remember what I was saying, I'm just rambling now and that there's me like, oh, let's talk about the, just the day-to-day stuff, because, like I think when I, when I see you, I'm like that test gets me here, it's fine, like I can just lay it all out there. Same thing with Warren, like Warren knows me as well. So I mean for me, like I can pretty much look at things now and I kind of laugh a lot and not make fun of myself, but just like that's how my brain works and that's how my brain works, yeah, yeah, you know. So, like day to day, for people that don't know, and it could just be that people, some people are struggling. They're like man, I just want to get through to Friday, but I'm dealing with this and I'm dealing with this and I just can't do this. Like what are some of the things that you feel, like you experience during the week that might help other people kind of go? Oh, so that's what she's talking about.
Speaker 3:Yeah, yeah, yeah. I guess for me, coming out the other side of burnout and sort of, you know it's been three or so years of burnout and during that time I was diagnosed, diagnosed. But during that time I've also gone through a huge amount of grief, you know, while processing the fact that I'm autistic and you know what that meant growing up when I didn't realize, and how that's impacted the ways I feel about myself and, you know, being able to trust myself, myself and all that sort of thing. So for me, day to day, it's dealing with the mental health aspects of being late diagnosed and you know, having to deal with all that stuff. It's then trying to work out at now, age 45, like what do I need? And understanding what my needs are, because in the past I'd always just based it on external validation and external sort of feedback from people if I was on the right path or not, instead of sort of looking internally. So you know it, for me at the moment it's a lot of reflection, it's a lot of work with my psychologist, it's a lot of learning from my daughter who was diagnosed when she was autistic, when she was nine, and then you know, and retraining myself to understand that I do need rest and that's fine. You know, I don't need to be working 24-7. I don't need to be pushing myself to the very limits of what I can do, which is what I've done in the past.
Speaker 3:So, yeah, rest it involves watching a lot of Real Housewives and just leaning into but leaning into the things that make me happy and not feeling guilty about that, and understanding why these things do. You know, it involves, yeah, it's just for me now. Yeah, it's just for me now. It's just the way I live my life with. Everything sort of comes back to, um, what I need to be able to function effectively as a, you know, as an employee, as a mother, as a friend, um, and being able to properly prioritise those things and make decisions based on those. So it's hard, I guess it's. You know, there's the day-to-day stuff of, you know, accidentally, info-dumping, you know, on someone about Vanderpump Rules or Real Housewives of Beverly Hills, and there's also the holistic side of it of just understanding who I am and that there's actually nothing wrong with me and then, yeah, and giving myself grace because of that. So, yeah, I'm still very much in the depths of that post-diagnosis, sort of post-burnout, you know sort of raising like self-awareness, gaining that self-awareness.
Speaker 2:So how do you feel when then you you know you see news stories like autism being an epidemic that word epidemic. How do you feel about that?
Speaker 3:Probably angry and sad like I. I worry, then, for, you know, for kids who, kids and adults who are undiagnosed and who don't understand why they react the way they do, don't understand what drives them, what causes them to, you know, have a meltdown, to be emotionally dysregulated, and that might not ever have the chance to get that knowledge and that understanding, because it's seen as something really negative. It's seen as something that we need to stamp out. You know, with RFK Junior saying it's an epidemic that he's going to find the cause for by September, rfk Jr saying it's an epidemic that he's going to find the cause for by September, when you know all research points very much to there being a very strong genetic component. It just reinforces that this is something that's wrong with people and that we shouldn't, that people shouldn't be, you know, and that's scary because that means that I'm wrong. You know, and just as I've learnt, you know, and just as I've come to accept that I'm not and that I'm a valid human being and that you know I'm worthwhile and all those sorts of things, you know, you have these people saying, well, this is bad. You know, and I do. You know, jump on the comments on Instagram sometimes, and you know, just sort of try and steer people in the right direction. You know, if people are talking about their kids and trying to fix their kids or that sort of thing, and just say, look, we don't need to be fixed, we just need to be understood and supported, and that's not that hard, you know, like it's, it's as supporting an autistic person can, as a friend, can be as simple as just, you know, thinking about them when you're making plans to go somewhere. You know, like it's, is this environment going to be really noisy? Is it going to be really busy? You know, like, what sort of activities can we do? Like it's, it's not, it's not a difficult thing at all. Um, and that just makes all the difference. Yeah, but, yeah, I worry about, yeah, I just understood. Yeah, yeah, I do.
Speaker 3:I worry about, I worry about kids, I worry about then the discourse coming out and therefore, um, it reinforcing the negativity, the reinforcing that you know that by labeling kids as autistic, it's, it's negative for them, um, and it's only negative for them, because society, you know, sees it that way. Um, when, really, yeah, it's for me, I love it, I love being autistic, I love, you know the way I think I love um understanding myself. I love my autistic. I love you know the way I think I love understanding myself. I love my interest in the world and you know the way I see things and my sensory stuff. Like I love that I can experience things intensely now that I know how to manage myself so that it doesn't become too much, and I think it's exceptional and it's amazing. And, like in all things, we need diversity of thought and experience and belief to make the world a better place.
Speaker 2:And I always go back to the sense of belonging and inclusion. It worries me that there'd be any child that is different, that wouldn't feel like they belonged in they belong well, that there was no place for them in this world. That to me, is devastating and, uh, really frightening as a, as a parent, to yeah, yeah, to try like, because you know, as adults we can navigate, um, can navigate things. We've figured it out somewhat.
Speaker 3:But when we've got beautiful little, innocent young people who haven't yet had to, haven't been nailed with society's expectations, and it's scary because you just kind of want things to be easier yeah, 100, yeah, yeah, I think, um, I think the stats in australia are, um, that and again, I'm, I think this is about autistic, not necessarily neurodivergence in general, but autistic people are nine times more likely to die by suicide. And for me, I've been through two times in my life now, when I was 19 and just last year, where I was hospitalised for suicidal ideation, and, yeah, that's something that nobody should ever have to go through, full stop, and that definitely nobody should have to go through, um, because, you know, because of their neurotype, um, because that lack of understanding and um, you know it, just, it's easy to lose hope when you, when you don't, when you think that you are broken and that something's wrong with you, um, and then, as I said, when you don't look after yourself, you don't follow your own internal cues, you're only looking externally, it's easy to just to burn yourself out and not, you know, understand, they don't think you belong anyway, yeah, yeah, exactly, and not have that sort of wellness, um, and that's, you know, and it's all avoidable. It's all avoidable and you know, yes, being a parent to an autistic child can be exceptionally difficult. Being an autistic person can be exceptionally difficult, um, and you know, but that's. It comes back to community understanding and support. More than trying to fix, you know the person themselves because we're not broken.
Speaker 3:Different, not broken.
Speaker 2:It's a really good example of systems having to change, society and spaces having to change. It's really, really, really important. Yeah, absolutely yeah. We've talked about gender before. We've talked about um, you know, first nations, people, but yeah, it's, it's, it's the same. I think society and spaces need to change to make sure that, um, everybody's included.
Speaker 2:I think for me, I really struggled, um, you know, with school, probably when I was younger, was younger. I always thought that I just wasn't as smart as everybody else. There was a little bit of you know, I didn't feel like the same expectations were there for me that there were for others, but it was very easy for me to believe it as well, to believe that I wasn't an academic um and I loved. I mean, now I can kind of embrace, uh, where I'm at and there's a bit of humor that's kind of involved. So if I'm talking to my partner, carice, who is very much, everything has its place and its time. You know it's very, very opposite. So I am okay with chaos, I think, and with things being crazy and messy and loud, and to have a place for things that are convenient but might not. Also, you know, like all the sticky tape might not be in the sticky tape drawer that's next to the scissors and the gift wrap stuff.
Speaker 2:The scissors will be in a place.
Speaker 3:I'm getting tense just listening to you.
Speaker 2:The scissors will be in a place where I can easily reach them if I even need them while I'm sitting in a place Like that's me. But I'm also aware. So, while there was some grief involved with what I could have done had I known, there was also the realisation that I would not have nearly been as successful on the basketball court if I wasn't ADD, because ADD what I'd realised is not that you can't pay attention, is that you pay attention to all kinds of shit. Yeah, everything all at once, yeah. So if I'm a point guard and I was a point guard on the basketball court I knew that I could move and shift defence whilst also keeping an eye on space, whilst also keeping an eye on whether or not a team-mate would fill that space so that I could throw the ball, you know, to bring people into the game. So that was the thing I was always most proud of in doing, and I guess I created a whole life out of basketball. So I'm proud of that and I wouldn't have been able to do that had I not been ADD.
Speaker 2:I think the sense to being ADD is like you're going, going, I think of it and I always go back to the sporting analogies. One I'm a t. One I'm a teacher. Two is a teacher. Three, an athlete. Like there's got, there's lots of life's lessons that you can learn through sport. I'm really passionate about that. So, being add as well, it's like I'm bored with routine. Do you know how routine bouncing a basketball is? Bounce, bounce, bounce. The basketball does the same thing if you push it in the same angle, whereas my ad break goes. What are the limits?
Speaker 2:of a dribble where I could do all kinds of dribbles. I could change the length of the dribble, the angle of the dribble, the way that my hand moves, um, to create something far more interesting and effective on the court. And then it became okay, I can change the way that my hand moves to create something far more interesting and effective on the court. And then it became okay, I can change the way I can dribble. I've defined it differently and now let's see what I can do with timing and explosive movements, all of those things. And then basketball became fun. It's more fun, yeah, but I think, too strangely, I can see some really different patterns that are occurring, not necessarily things that sometimes practically matter, you know, to the average person, but again, sport I can recognise very quickly about how a person moves and adjust to being able to defend a person or to match a movement, which is really fun.
Speaker 2:Now, this conversation is for Warren, because it's going to probably Warren shout out to you because, as Warren knows, he works with us one of the best dudes ever. He knows that I love to think about the picture. Yes, I call it purposefully dreaming. I love that I'm trying to sort of be a bit of a visionary, and for no one else but myself, because I just love to do it, but I think there's a purpose behind it. Now I go this is amazing and I can smell what that smells like and I can feel what it feels like and I know what it looks like like shit. How do we get there?
Speaker 2:yeah, that's relatable it's a warren yeah, he won because that is his um, his, his detail um as well, and he didn't. He can do both, but um, yeah, that's always been my challenge as an add person. Yeah, because I like to explore all the different pathways to those things. Yeah, and sometimes you haven't been on that pathway long enough to explore how far it could possibly take you before you get bored with that actual routine of doing things to then go. I'm going to change, yeah, yeah, I'm going to change a different type. I think of it as, like, I'm going to write a list in this amazing new notebook that I've got. I'm bored with this notebook.
Speaker 3:I need a new notebook. I hate lists.
Speaker 2:I don't want to follow directions Give me a black pen, ooh, different colored gel pens. So, yeah, different notebook every month, yeah, um, yeah, I'll cross out the different notes, the various notes that I've got. Uh, work in progress plan. I'm still working on it. I see the value in it, absolutely, um, but boy it's it. Just it's my brain to do it, um, on a consistent basis.
Speaker 2:Yeah, but I also find as well, like, uh, I do not like to be bothered with boring stuff. Um, like, the scissors belong in this drawer, yeah, um, or please use this type of fabric, something with it, yeah, I just, yeah, it's so boring. I've got far greater things to dream about. And you know the other thing too, and if you haven't already noticed from the podcast conversations that we've had, I think that, as a mid-sentence, trying to get to my point, that there's a side story that's really highly relevant that y'all should know about, or it just could be funny, um, just to get a bit of a, you know, to have a bit of a laugh. So, yeah, I could take you, I could me and you all through the inner workings of my brain in a podcast and you're going, what the actual where is she going?
Speaker 3:but yeah, that's actually a great idea, just just let a couple of add. People just tell the stories, I mean I guess that's what we're doing, but yeah, I mean, I did. I, you know, get caught telling a story and then I get distracted by like a light or something and then just completely lose my train of thought, which is always fun.
Speaker 2:There's a show up. Yes, you know, when you look at the dogs, it's like it's well, I'm lost, that's me, and you know. When the dogs is like 12, yeah, I'm off, that's me. And you know, it's usually a mr whippy van and my two kids are chasing me like mommy, you want ice cream. So yeah, I'm like off, I go and um, yeah, I could be in the middle of you know teaching. Uh, lennox, maybe you know toilet training. Back in the day my head used to appear.
Speaker 1:Bye baby, I'll be back in a minute, If you get that done, I'll bring you an ice cream.
Speaker 2:Yeah, anyway, the other thing too, that.
Speaker 2:I do like about how my brain works and I like and I don't like how my brain works is that I think too far into the depth of things. Sometimes I don't come out. Now, if I'm thinking too far into the depth of things, that I'm thinking my own thoughts, that that can be a hell that I don't necessarily want to be in all the time because I don't always have the greatest thoughts about what I'm telling myself. I've got to coach myself out of those um. In terms of um, I could get really deep into things, like I'll get a hyper focus now.
Speaker 2:You and I, we talk about American politics, yeah, and it's like we, no matter how fast we run, we're like we, we can't get away from it, we are all over. It same thing with if. If someone tells me something like, uh, a theory or a conspiracy, or or if someone says, hey, there's no files that have been released for jfk, I'm like, oh, my god, I'm gonna be awakened before am and I'm gonna love every minute of it. As I pick through the fbi files about how you know Lyndon B Johnson is possibly responsible for, you know, the assassination of JFK, like, do I need? But that stuff is so mind-blowingly amusing I can't let it go until.
Speaker 3:I've figured it out. It's good for your brain to do that, though right Like it's, you know as much as when you're awake at 3am, scrolling or reading something when you know you've got to get up at you know seven. But yeah, I think and I think that's what I'm sort of trying to learn to do is to lean into those things and recognise that it's okay. It's okay for me to hyper-focus on something. Or, you know, for me, I spend a lot of my time at home, around the house, wearing headphones and listening to podcasts, even black podcasts that I'll have on repeat and listen to again and again, because it sort of quietens my mind and just allows me to focus on one thing rather than a million different things, and I'm very sensitive to sound as well. So, yeah, you know's, it probably looks bizarre on the outside that I'm working away on something while listening to the podcast I've listened to 50 times already and I know back to front.
Speaker 2:but it's, you know, it's just finding those ways that that your brain works and recognizing that that's okay yeah, I get a lot of um when I'm working on something, and it can be really detailed, I might have something playing in the background and I'll always get someone come along and go how come, how can? How can you have that in the background and like work and concentrate? Well, I need to. It's like having a part of me that, having a part of my brain that needs to stay occupied on something so that I can focus.
Speaker 1:Yeah, yeah, yeah yeah.
Speaker 2:It's so crazy, and whenever I say that, the person I'm talking to is like oh, okay, yeah, and it's just left at that.
Speaker 3:Yeah, no, I completely relate to that.
Speaker 2:I think the one part that I've realized that I've always, uh, struggled with in terms of um, what, what comes along with it, um, which is what they call rsd.
Speaker 3:Yes, yeah, um and that's not my favorite, that's rejection, sensitivity, dysphoria, yeah oh it's also um, yeah, sorry, sorry, no, I was thinking of something else then.
Speaker 2:No, no it's. I think. I've always thought of it as I think it probably got worse when you know puberty came along and into high school. So I think generally if you've got some things going on and estrogen comes into the house, and you're like hey it's like, holy, everything goes up everywhere.
Speaker 2:But, yeah, I've been trying to really understand it. But when I sat down in terms of the diagnosis for ADD, I described some of these things and it was really. I thought that I was just deeply depressed. I got depressed around different things and so I had to be medicated for that. But I think of it as a fear of failure, or a perceived sense of failure.
Speaker 2:Yeah, and because having RSD, you know it, what it? What it sounds like in terms of rejection, like if you don't feel like you fit somewhere or you're rejected in a certain way friendship group or criticized harshly. Uh, it's difficult to get over. Um, now, if you don't know, if you don't know what it is, then it's really hampering and it can really take you to a dark place and you can really convince yourself that you've really got not a whole lot to offer. I think it turns you into a more insular person where it's like gosh, I'd really love to try that activity, but I don't want to be embarrassed. Yeah, I don't want to follow my face. I don't want people to make fun of me. I don't want to see, I don't want people to see me fail. Yeah, and it's putting yourself out in your most vulnerable moments, when you're trying things, challenging yourself. You kind of just want to do that alone to assess where you're at and then and then take it outside of things. The only time I didn't have that was on the basketball court yeah, right, which was a little bit weird, um. But when it came time to um, you know, trying out for different teams and stuff like that, it it was just I felt like I was absolutely vulnerable and I didn't know what I would do if I didn't make it. But it feels like an actual wound that you carry around, although a physical wound, it's either a Band-Aid or it can be fixed, but something that you can't see and it just keeps coming back at the most inopportune times. And generally you're weakest when you have to do the most yeah, like when you have kids. It comes back and it challenges you, yeah.
Speaker 2:So I think between you know the ruminating and replaying things, failures in your head, humiliations, perceived humiliations. I mean a lot of the time, you know, I would perceive a humiliation that wasn't. People saw it far differently to what I saw it, but that would take me backwards. I'd be more insular, wouldn't put myself out there, wouldn't try new things because I wouldn't want to disappoint anybody, could barely speak, intensely shy in a lot of ways when I'm meeting new people. And then you know, when you don't challenge yourself and put yourself out there, you're pretty much destined to underachieve, because you don't see hard and challenging circumstances as learning experiences. You see them as like fuck, it's the end of the world. Yeah, and that's how I saw it.
Speaker 2:Yeah, and strangely, I've seen lots and lots of young women dealing with the same thing. But that is a very common accompaniment to ADD. It's not amazing. Is a very common accompaniment to ADD? Yeah, it's not amazing. I think it can be somewhat accounted for with medication, but you've got to get the right dose, the right combination, I think for your biology. I feel like I don't have that too much anymore.
Speaker 3:Sometimes it creeps in and I've really got to massageager back um, I've got to do a lot of work, but the awareness of it, I suppose, has made a big difference, just in you being able to recognize it, be aware of it and therefore pull yourself up on it when you or you know. Not pull yourself up on it, but just work with it, I suppose.
Speaker 2:Yeah and just if I've made a mistake, I mean made a mistake, yeah, yeah, yeah, oh shit.
Speaker 1:And say sorry, sorry, I just if I've made a mistake.
Speaker 2:It's like man, you made a mistake. Yeah, yeah, yeah, oh shit, and say sorry, sorry, I'm so sorry I made a mistake. Yeah, yeah, sorry, I've been calling your brother the wrong name for a year. Sorry about that, yeah, but I mean there's like you can be. The other thing with that, too, is that you're you just set standards piece of that are impossibly high, yeah, that no one can reach. Um, yeah, and then you'll, yeah, you'll. You'll set lots of uh, I guess boundaries and guiding behaviours for you not to reach that impossible target. Yeah, yeah, lots of self-sabotaging and trying to make people pleased too, which is never great, yeah, but the playing things over and over is always difficult too. It's not good for anybody.
Speaker 3:Yeah, yeah, yeah, I have a lot of sort of, I guess, rumination and things, but I also realise now that I need time. After pretty much any social interaction, I need time to just to let myself go through that process, you know, instead of fighting it. You know, and I also recognize now it will also take me a couple of days, you know, before I actually properly process something. I had a conversation recently where I intellectually at the time I recognized that it didn't make me feel comfortable, but it took me. It was two days later until I actually cried, you know, until I actually sort of emotionally processed it and went, yeah, right, that really didn't sit well with me and you know, and I understand why and that sort of thing, and in the past I've never allowed myself that time because I didn't realise I needed it.
Speaker 3:And for me that's meant that there's been a lot of things over the years that I, you know, hadn't emotionally processed. You know, which is why it's been such a. You know it's been. My mental health has sort of struggled since I was diagnosed because, well, up until recently, because, see, I did it again, I lost the train of thought. I looked up to the thing and I lost train of thought Okay, I'm coming back.
Speaker 2:And I had a question to ask you and I'm like, and then I said to myself, don't interrupt.
Speaker 3:Oh, this is the good thing, we can edit all this out, yeah, anyway. But yeah, just that's right, the amount of time I need to process stuff. And yeah, and recogn, recognizing that I, you know that I'm allowed to give myself that time, um, because you know what happened to me, I guess, is that I sort of, you know, growing up not really knowing what was wrong with me in air quotes, um, therefore, I really did shut down. So my um dad died very suddenly in a plane crash when I was 21. Uh, last time I saw him was my 21st birthday and I've only just actually processed all that recently. So I've only processed that since I've been diagnosed and since I've been going through all of this, because that was just such a.
Speaker 3:I was already in a, in a vulnerable state when he died, like I you know, had been sort of had severe anxiety and depression sort of around that time in my late teens, and then, you know, he dying so suddenly and so unexpectedly and in such a sort of traumatic way. It was just too much, you know, and I did, I just shut it all down and that sort of, and I've always, and then I've always felt so sad, you know, especially certain milestones like the anniversary of his death or the anniversary of his birthday or that sort of thing, and I've never been able to get past that until now. Like this year, on the anniversary of his death was the first time where I've felt sad, but I haven't let it consume me, you know, like it's just been something that I've been able to and I've felt good feelings on that day as well, you know, as opposed to just sort of feeling overwhelmed and almost a bit blank and yeah, and that's so important. I said that to my psychologist recently. I was like, whoa, feeling your feelings is really good, like it's so helpful, and he was like, yes, yes, that's right.
Speaker 3:So yeah, it's been life-changing for me and I do feel worried for I mean other, particularly women, people of colour, you know, marginalised groups who haven't been recognised. You know the signs of neurodivergence haven't been recognised in them because all the you know, the initial studies and things were all done on boys, on white boys. So the understanding we have of autism in particular is very much based on the presentation of one particular group of people and that's led to lots of people like myself, like yourself, being overlooked and not realising until we are, excuse me, in our 40s, you know, have kids and they get diagnosed, or we're going through perimenopause and, you know, shit starts to fly everywhere, just because you think you've got it together.
Speaker 2:Someone tells you you need some. What the hell?
Speaker 3:yeah, exactly so. It's just you know, and then you know, and then we finally sort of realize and you know there's, and then that's, that's sort of um thought of as a, as an epidemic, when in fact it's not. It's just a, a correction of people being recognised as what they are just way later in life, and the prevalence of autism and ADHD diagnosis increasing is seen as a negative thing and something that we need to sort of control, when actually it's just a reflection that people you know, just because you know like to be autistic, doesn't mean you have to line up toy trains and you know all that sort of stuff. It's all different ways that it comes across and they're all equally Spectacular. Yeah, exactly I think spectacular.
Speaker 2:Yeah, I think I like to think about the, because you talked about feelings and it's good to feel. I feel the opposite sometimes, because I just don't feel too much. Yeah, yeah, it's just too much. I've got everything from seeing how people get together around the world to.
Speaker 2:Gaza to what's happening in the US. Like I cannot switch off the injustice of everything. Um, yeah, if you put everything together, it's just too much. I call it the too muchness. Yeah, stuff, um, which usually means I need to take a walk or a run, um, or go shuffle around on the basketball court, but yeah it's. I think I'm really sensitive in this Sometimes, like I've got to really make a concerted effort too. If someone's got, oh, let's go watch this movie, it's a true story, and I'm like, oh, hell, no, yeah, yeah, there's no way I can watch that right now. I've got to make space to process that because I can't have it add to too muchness, because it's already too much. Um, yeah, I think the other thing, um, that used to drive me crazy was the um, well, it's not. I had a really hard time that to coach myself when.
Speaker 3:I was younger how?
Speaker 2:do you? How do you go with compliments?
Speaker 3:I can't oh, yeah, no, I, I, um, I no, just straight away, like I'll just never, I'll never believe it, you know. And whereas a criticism straight away, yep, of course that makes sense, you know, like I believe that 100% Compliments, yeah, struggle with massively.
Speaker 2:And there's a compliment yeah, but in your head. So yeah, it's interesting. You know the things that we tell ourselves. That can be really hard for us and we don't do that. And the negative things that people might say never, yeah.
Speaker 1:Yeah, yeah, yeah.
Speaker 2:I mean, yeah, but the compliments that people have um really good things we tend to just let escape um our minds as if it's um insignificant and unuseful, um is that a word? Useless, unuseful?
Speaker 3:what is my brain? Everybody, the only person who just makes up words that don't actually.
Speaker 2:It's a word now. Yes, unuseful. Unuseful is useless. Okay, um, adding unto useful is completely useless. Just used useless. Uh, amazing, gosh, I'm just astounded by my ability to make up new words.
Speaker 2:It's incredible, um, yeah no I remember younger is that I would rather melt into the floor if, um, if somebody, I still feel the same absolute discomfort and to a point where I could, um, I knew what a compliment sounded like and I like, I like giving compliments. But because'm so like, I'm visibly uncomfortable with anyone giving me a compliment, and especially as sort of a. You know, like my partner's family very American, so Carissa's aunties they're like, oh like, really big and enthusiastic about their compliments and I'm like, oh my God, this is the worst compliment I've ever been given.
Speaker 2:I've got to deal with all this beautiful emotion and process it. But yeah, it kind of taught me a little bit to go. Hey, people actually like compliments. You're probably like one of the few people that don't like compliments. But just because you don't like them doesn't mean that other people don't like them. So just because you don't like them doesn't mean that other people don't like them, so get used to giving them. So I had to learn how to show appreciation and give compliments. Sometimes I struggle with it because I don't want anybody to give me that same appreciation and compliment. I'm good without it. Yeah, in fact, I'd prefer if you just didn't say it all.
Speaker 1:Yeah, In fact.
Speaker 2:I'd prefer if you just didn't say it all. Yeah, but it forced me to try to be a better communicator, with saying how I feel, which still doesn't happen as often as I'd like.
Speaker 3:Yeah, and for me, because it takes me a couple of days sometimes to process stuff. It's like after you think of something really good to say when someone said something shitty to you or whatever, and after you think of something really good to say, you know, when someone said something shitty to you or whatever, and then you think of something a couple of hours later. Oh, I should have said that. It's like for me as well. If someone says something and it takes me two days to process it, it's hard to come back, you know, into that same conversation that other person's moved on.
Speaker 3:But, um, I think in regards to compliments, like I just never in regards to compliments, I just never sort of believed them because my own self-worth was so low. And then it's only, yeah, it's just been recently I did the worked on the Rottenness Channel Channel swim with a good friend of mine and it actually fell exactly a year to the day since I took myself to emergency because of suicidal ideation. And you know she pulled me aside at one point and just said you should be so proud of, like, how far you've come.
Speaker 3:And in the past I would have probably dismissed that, but I really, you know, took it in and listened, but then almost straight away it was like no, let's not do this now, you know because you know no time to get emotional sort of thing, but when I got home that night and I sort of really thought about it and I did, I let myself feel, I let myself cry, you know, I let myself actually recognize that I did feel proud of myself, um, and that's probably the first time in 45 years where I've had that experience and let myself do that, and it's yeah, and it's super liberating.
Speaker 3:And so when people, you know, when people do talk about, you know, autistic people needing to be fixed or needing to act more like neurotypical people or all those things, I just I get really defensive for all the autistic people out there who, um, you know, because we deserve to be able to experience, you know, good feelings as well, right, like and putting us in a box and thinking that we need to act like everybody else. And this goes for everyone, this goes for, you know, any, any community. Um, it's just, it's, it's deadly in the literal meaning of the term.
Speaker 2:You know, like not in the black, not in the no it's undeadly um.
Speaker 2:So yeah, it's uh yeah, I'm just thinking about that. I mean that's, I've been in a place before where I felt like I could be here. If I'm not here, um, but at that point in time I was aware of my movement in medication, where those types of thoughts and feelings would feel artificial. So the brief moment and the unbearability of that moment where I was able to call my partner for help, who was there within 30 minutes, where I had the support that I needed immediately, but, having you know, thinking about what you might have gone through at that particular time, yeah, the length of time that I might have gone for.
Speaker 3:Yeah, well, when I went last year year, I was over on the Gold Coast, I'd just moved there, and so I didn't have any sort of support systems around or anything which obviously all you know, which all contributed, and my partner at the time sort of was just, you know, doing his best just to get along with life in general. But it was it, it took friend, it was three friends over here in Perth who actually helped me even get to the hospital, you know like calling an uber and things like that, because by the point at that point that I was in, I'm completely non-verbal.
Speaker 3:I was like just panicking, like just beside myself, because I knew that, you know that I was really, really unwell and I really needed, you know, help and I had no idea how to get it and yeah, and so if it wasn't for them, then you know, it would have just been, yeah, I don't know, a bit of a disaster. But you know, I guess the difference last year to when I went through a similar thing when I was 19 was that I knew that I didn't have to feel this way. You know, when I was 19, I was just overwhelmed by the feeling of, you know, just feeling like it was too hard, I didn't belong, you know, all those sorts of things, whereas this time, because I had that awareness of my neurotype and everything else, it's like no, it's, there's nothing. Actually, there's nothing bad about me, it's just that, yeah, I'm just, I'm well and I need support, I need help.
Speaker 2:so, yeah, on another note, tess on a brighter note, um, you did the rodney swim, yes, the actual swim when I like, I swim it.
Speaker 3:Yes, that was that's 10 years ago now. So I need to um the solo in 2015 and a team in 2019. And I paddled once and it was horrible. Never paddle, I just wanted to be in the water the whole time. I was just like paddling, just going, I just want to be swimming. But you know, I did, I did a solo in 2015, um, and I um yeah, I mean that's that's, you know, that's where you can pull out the whole superpower thing. I guess, because you know my ability just to focus on my training and I was living in the Barossa and training on my own in a 25-metre indoor pool. I actually hadn't done any open water swimming until I did my 10K qualifier swim over here in.
Speaker 3:Perth. I flew over for it. So whether that's stupidity or hyper-focus I'm not sure, but yeah, it was an experience. It took nine and a half hours.
Speaker 2:I was a slow swimmer but I got there, couldn't, I couldn't do it. Um, yeah, I mean, I've already talked about, I've already talked about paying attention to way too much. Um, so, firstly, I'd have to be listening to myself. Um, in the water, yes, that's problem number one. Problem number two shark sea. No, that's not a shark. Well, it's dark over there. There's something that I pan. Yeah, too much deep water for me. Too much movement going on. I'd never be able to. I think I'd use up half my energy looking at all of the things that I'm moving to make sure that I didn't get eaten by a shark.
Speaker 3:Yeah, and it's pretty clear, the water as well. I mean, you can see the bottom pretty much the whole way across, apart from when you're going through the actual channel, and that's which can be good, but it can be problematic. There was one point where I don't know how many hours in sort of, because I did the first 10ks in three and a half hours. The second 10ks took me six hours, um, because I think the skipper, who I'd hired off Gumtree don't do that people um, he took us on a very northerly track and the current, as it sort of came in in the afternoon or, yeah, in the late morning afternoon, was pushing us north as well. So there was a time where swimming against the current and just not actually getting anywhere, and I sort of was swimming and, to your point, sort of paying attention to what was going on, and there was this starfish, um on the bottom of the, you know, on the ocean, and I was just swimming for ages. It felt like just watching the same starfish going nowhere, you know um, which I had now got tattooed on my arm and as a reminder. It was a reminder at first to just keep swimming, and now sometimes I take it as a as a um, as a sign just to also, it's okay just to stay still sometimes, um, but yeah, that was, that was a moment. I wonder what that starfish was thinking. You poor bastard, someone pull her out already. I know.
Speaker 3:And my friend who was paddling she was on I had a sister and my friend paddling and my friend who was on the boat shout out to Christy Piker. She was like at one point you were going backwards, you know, like the current was pushing you faster than you could swim. So she was like we thought we were going to have to pull you out. But but I didn't know any of this, you know, I was just just swimming, um, but to your point, listening to your own thoughts, absolutely like swimming up and down the black line every day. Um, so what I did is I taught. I learned all the melbourne cup winners um, I've forgotten them now, but for a time there I, if you said to me who was the melbourne cup winner in you know 1980, and I'd be like belldell ball or you know 1934, whatever it was. So, yeah, that's how I got through. I just taught myself by, yeah, every Melbourne Cup winner from when it started to 2015. That's useless information.
Speaker 2:The only information that I can remember honestly yeah, the phone numbers yes, so yeah, it's, um, it's been nice and refreshing.
Speaker 2:this would have been a good therapy session actually, so, and I hope that people listening have gotten something out of it because, um, yeah, I think I don't. I don't think that there's such a thing as neurotypical at all anymore. I think that we just haven't really talked enough or explored enough what everybody thinks like yeah, so the more that we do that, the better it is. It will be for everybody, yeah, yeah. And then we can, all you know, start to evolve language like unuseful and yeah, unuseful and undeadly yeah um, yeah, but I hope.
Speaker 2:I hope that there are. You know, some of our listeners have gotten something out of this. There might be, you know, part of our conversation that resonated with you. All of it might have resonated with you. In that case, give us a whole lot. You might be able to have a longer conversation. Um, yeah, but it's lovely having a chat and yeah, thanks for being so vulnerable and sometimes feels like every day sometimes, but uh, yeah, yeah, no, it's something I, I, I, I guess enjoy talking about it.
Speaker 3:I guess guess to a degree and I can see the benefits. You know, like I myself consumed, have consumed a lot of media, I found a lot of solace in you know Chloe Hayden and Hannah Gadsby and you know a few other people, autistic women who are, you know, out and about and talking about their experience and I think, yeah, can, it can only be beneficial. Yeah, I agree. Hey guys, thanks for listening. Wildfire is about sparking meaningful conversations that matter to Ember Connect's members and allies. This podcast creates a space to amplify voices, share stories and explore topics that drive change, connection and personal and professional growth. By bringing these conversations to life, we aim to inspire action, deepen understanding and strengthen the collective impact of the Ember Connect network. A huge thanks to our guests for sharing their knowledge, insights, time and passion with us, and to find out more about Ember Connect, visit emberconnectcomau.
