ADHD, Autism & AuDHD: Trauma, Masking and Late Diagnosis with Ellie AuDHD Capstick

Notes from the Edge

Ellie AuDHD Capstick shares her journey of late diagnosis with ADHD and autism (AuDHD), exploring how decades of self-blame, masking, trauma, and burnout shaped

Key takeaways

• Late diagnosis provided Ellie with language for lifelong struggles previously labeled as personal failure or laziness.
• Masking and social performance led to burnout; dropping the mask has been transformative for self-advocacy and well-being.

Main topics

• ADHD and autism intersection (AuDHD)
• Trauma and childhood sexual abuse

Notable quotes

"I'm not called Ellie that doesn't make eye contacts anymore. Ellie that talks too much. Ellie that's crazy. Ellie that has a meltdown when the light goes on. Ellie that slaps herself in the face. I don't have them labels anymore. I'm Ellie all DHD and people always say, is that a way to market yourself? It wasn't. It was just a way because all my life I've had someone call me something and I decided to take my power back."

Conclusion

Ellie's story underscores the profound impact of diagnosis and self-acceptance on mental health, identity,

Transcript preview

Speaker 2 (0:03) Welcome to Notes from the Edge, where we have the conversations we should have been having all along. We talk about the things that we're not talking about. I'm your host, Lisa Lacey, writer, trauma educator, executive advisor, and author of the upcoming memoir, Notes from a Certified Madwoman to the Edge. Speaker 2 (0:34) Hey, my friends. Welcome back to another episode of Notes from the Edge. I am your host, Lisa Lacey, and this is the place we have the conversations we should have been having all along. Guess what? You're not talking about it. So today we're gonna. So imagine spending decades thinking, why is this so much harder for me than it seems to be for everyone else? You're exhausted. You rehearse conversations over and over. You constantly adjust yourself to make people feel more comfortable. Criticism feels enormous. You feel like you understand everybody else while they don't take the time to understand you. And then one day, someone gives you language for it. Audie HD. Today's guest. is Ellie, an Audie HD educator, podcast host, and founder of Ellie Audie HD, where she talks openly about ADHD, autism, trauma, masking, burnout, relationships, and the everyday reality of being a late diagnosed neurodivergent adult. And she does it without pretending that it's either a tragedy or a cute collection of quirky personality traits. There are funny parts, but there are maddening parts, and we're not going to avoid those today. There are parts that nobody puts on an inspirational Instagram graphic, and today we're going there. Speaker 1 (2:04) Ellie, welcome to Notes from the Edge, my Speaker 2 (2:07) friend. How are you today? Speaker 1 (2:08) Thank you so much. I loved that. I loved all of it. I was sitting on the edge of my seat. Speaker 2 (2:13) Oh, me too, me too. Well, I have been looking forward to this conversation since we got connected and disconnected and then connected again. But this is Notes from the Edge, my friend, so we're just going to dive right in. So let's start before you got your diagnosis. So before you had language for ADHD, autism, or Audi-HD. What explanation had you created for your own life? Why did you think things felt harder? Or did you even know that it felt harder? Speaker 1 (2:50) My whole life since I could walk or talk was horrible. I was bullied consistently. School was horrible. I felt like... I couldn't do anything that any of the other children were doing and I got constant criticism because of it. At home, I couldn't do anything that my sisters were doing. I would do it differently. I would think differently. So the whole way through my life, and apparently is actually a stat that neurodivergent people experience 20 % more criticism than their neurotypical counterparts. Now, without even realising, my parents had done that my whole life. they're lovely people but they never mean to because in comparison with my sisters they just thought oh you know let's let's explain it more to Ellie let's tell Ellie she's doing it wrong um but unfortunately then you you would carry that narrative with you your whole life and it doesn't just happen at home it happens throughout your whole life there's an added layer as I suffered um childhood sexual abuse as a child and so basically I saw a lot of my quirks or things that I didn't understand or a lot of my trauma was down to that but it didn't quite fit with other people that I'd met that had gone through the same thing and there was a lot more stuff going on for me and so I still didn't feel like I fit in anywhere and then I had my children and people would my children are now in their 20s and people would approach me and say you know your children are autistic and I would be offended because I was like whoa you know that's I don't know if that's something that you say to people. Now I know I'm more educated on it. I know it's fine to say it because there's nothing wrong with that at all. It's just a different neurotype. But lo and behold, my children were diagnosed with... all kinds of neurodivergences. My dad suddenly started to make sense to me. I'd never understood my dad. In fact, I did understand my dad, but no one else understood my dad. He's a very unusual man. He's very OCD about things. He's very, he brought us up quite militantly. like in an autistic way, we had to do things a certain way, otherwise they can't be done. And everyone else saw that abusive, but I saw that as something that I really understood and something that really made me feel comfortable. So I even started to understand my dad and my dad's now started to understand itself. And so it's given me the language that I needed. All of these years, I've suffered with things like rejection, sensitive dysphoria, which is in relationships or in any relationships where you feel like you're going to get rejected. So you act like you're trying to grab onto something really fast and really tight. And I've always suffered with that. And I thought that that was just craziness. And even people around me thought that was craziness. Now I have a name for it and it's RSD. And I know it's very normal for people like me to get RSD or anyone in general. I always thought I was lazy because I'd always been told I was lazy, whether that was, you know. people didn't mean to say lazy my mom never meant any malice with anything she said but you know she's like get up and stop being so lazy I now know it's actually not laziness it's executive some of its laziness but it's executive dysfunction and and I I'm so passionate because when I had my first set of children that are now in their 20s I didn't know about neurodivergence and when they were presenting signs of neurodivergence I would try and stop them presenting them signs because I think I'm doing the best for them. So I'd say, stop being lazy. Don't be like me. Or if I'd see them stimming or something, I'd say, stop doing that. People are going to look at you. And I am so regretful of that because that killed a lot of their confidence. So I am now so, so passionate about teaching parents what to do with their children's neurodivergence and how to channel it. Because don't get me wrong, it's not a superpower. It hasn't been a superpower for me. It also, if I could change it, I'm not sure I would because I like who I am. And I think a lot of who I am comes from my neurodivergence. It's such a massive part of me. But I just think that people need to, if you're going to send your children to school and your children are neurodivergent, you need to let them know they're not fish like all of the other children in the class. And they can't swim like all of the other children in the class. But that's okay because they can build their own boat and they can get off. across the water that way. But all the time you leave them there in the school without a label, thinking that why can't I be a fish like all my other friends and like my teachers, that breaks them. So it's better that you teach them the alternative method to make a boat than to still believe that they're a fish. Because a lot of parents believe, you know, we don't want to pigeonhole our children. And I believed this at first as well. We don't want to pigeonhole our children. We don't want to put a label on it. I can tell you. Having a label of neurodivergence has been the best thing that's ever happened to me because I don't, I'm not called Ellie that doesn't make eye contacts anymore. Ellie that talks too much. Ellie that's crazy. Ellie that has a meltdown when the light goes on. Ellie that slaps herself in the face. I don't have them labels anymore. I'm Ellie all DHD and people always say, is that a way to market yourself? It wasn't. It was just a way because all my life I've had someone call me something and I decided to take my power back. And actually, it's the only label I'm actually cool with. Yeah, it does define me and I'm OK with that. And so that doesn't mean a nutshell. That was my TED talk. Speaker 2 (8:16) Thank you. Thank you. Thank you. OK, I want to talk about ADHD. Yeah, because I think it's something that's not being talked enough about. Tell us about the combination and how that manifests in maybe your everyday life. Speaker 1 (8:36) Okay, so there's ADHD. So as you know, ADHD can sometimes, and when I say this, and I always put a disclaimer, once you meet one ADHD person, you've met one ADHD person. It's like you saying, I've met a Chinese person, they're all the same, or I've met an English person, they're all the same. No, we're all different. But I'm just saying, for example, ADHD is generally meant to be quite compulsive, quite led by dopamine and quite everything like that. You know, I get a lot of dopamine from things that are novelty. I'm quite impulsive. I'm not very good at managing my money and all of them things. So that's ADHD in a very, very basic nutshell and just my form of ADHD. Autism. And this is again. just my form of autism. I need calm. I need routine. I need the light off. I need time by myself. So if you can imagine that all the HD person sits upon this shoulder and the autistic person sits upon this shoulder and I don't know what the flip I need. I corrected myself. I don't know what the flip I need because one part of my brain is saying, I want to be crazy. I want to act like a drunk teenager. I want to go to the bar. And then the other half of me is like, I want to stay at home. I want to curl under a blanket. And people are confused because people are like, what one are you Ellie? And all my life people, people fail to understand me. And I failed to understand myself because I want to go out and go to the club, but then I get there and the lights will come on and I'll. have a meltdown and I won't understand why. And now I understand why. But I do feel like it's one of the most hardest neurotypes because it's not just the ADHD or the autism. It's two complete polar opposites living in the same brain and the same body. And that is my struggle. Speaker 2 (10:35) Wow, that sounds very, very challenging to complete polar opposite brain types living in the same body. It's Speaker 1 (10:45) almost like bipolar. So a lot of the time over the years, and I've been to therapists, and I know a lot of people that have been to therapists, and they say it might be borderline personality disorder. It might be. you know, it might be bipolar, it might be schizophrenia. And a lot of women, specifically women of my age have been misdiagnosed because it presents as something very, very similar. But that's just because you have them two neurotypes speaking to each other all the time. They don't shut up. When I get in bed at night, like half of me thinks. Did the light get turned out? Oh, let me have more of my vape. Oh, what have I got going on tomorrow? And then the other half of me knows I need to sleep. I've always known I'm going to be no good for three days. And there's just, it's a lot. It's a lot. Constant. Speaker 2 (11:31) Yeah. Yeah. Constant, constant, constant rolling in your Speaker 1 (11:34) head. Speaker 2 (11:35) So I Speaker 1 (11:36) talk Speaker 2 (11:37) constantly about, well, let's back it up a bit because I want to circle back to something you said. And I love that you are bringing attention to the fact that once we have language for why we are and how we are, our life, we have that aha moment because it happened for me at 40 years old Speaker 1 (11:59) in Speaker 2 (12:00) adult diagnosis rehabilitation center. I went in thinking I had a. minor drinking problem in a bad marriage yeah Speaker 1 (12:09) it attracts us neurodivergent people but um yeah so Speaker 2 (12:16) what tell us what that moment was like that moment of oh okay now I at least make sense to myself So I can start articulating myself to the people who care enough to try and understand. Speaker 1 (12:36) It's a lot of relief, a lot of grief and a lot of validation. So the grief is you feel a bit angry and a bit failed because you think shit. if people would have given me them accommodations over the years, like they would have given everyone else with a disability, my life may have been a lot better. So that's the kind of grief thing. And I could have got to very different places if I'd been supported more. But that's what happens. Relief, because I know I'm not crazy. And, you know, I wasn't getting things wrong. And I do have my good points. So there's grief, relief and validation. And also there was a lot of shame and guilt for me because I'd already started on that motherhood journey with my children who were neurodivergent. I'd already tried to take all of them neurodivergent traits out of them because I knew that that didn't serve me well in life. So I didn't want them to repeat the same pattern. So I felt a lot of guilt because I got hip to neurodivergence. And then I was like, oh, we just need different methods. We don't need to stamp the whole thing out completely. And then. I started to tell a lot of people around me and a lot of them were like, oh, that that makes perfect sense, because all of my life I've I've really struggled. I've I've had addiction problems with alcohol and cocaine in my life. I've been sober for 11 years now. Speaker 1 (14:00) I've struggled with so many things, with money, with holding down jobs, but I've always been quite intelligent and quite sociable. I appear very, very sociable, but I'll have this conversation with you now and then I will need to go to bed for a week. So this is my ADHD and then my autism will come out later and go, what the