Unmasked At 50: Finding Joy In Late-Diagnosed Autism

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Chapters

• 0:00 From Anxiety to Understanding
• 2:28 Social Media Discovery of Autism
• 4:25 The Professional Assessment Journey
• 11:44 Managing Life With Support Systems
• 16:31 Inside An Anxiety Attack
• 24:55 Female Friendships and Blunt Communication
• 29:48 Learning to Navigate Social Nuances
• 33:17 Writing From a Neurodiverse Perspective
• 35:38 Final Thoughts on Late Diagnosis

Transcript

Eden: 0:01

So I was late diagnosed. I only actually got my diagnosis last summer, which was an amazing, amazing thing for me because it explained a lot. And when I first found out and I was telling people and I thought people were going to say really no, that can't be. But everyone was like yes, yeah. So that was quite shocking because I thought I was masking super well, right, wasn't um and um yeah, but I would say my anxiety went from 80 percent most of the time to maybe like 10 to 20 percent. That's incredible either.

Eden: 0:45

It just I noticed in the first month because I'd I've had lots of talking, therapies and stuff, but obviously we didn't know that was just. We didn't know my brain was processing differently. So all the techniques that we tried they worked, but then they didn't and I felt like a huge failure and it turned out they just weren't the right techniques for me. And so instead of, for example, if I went into a coffee shop, I would feel really panicky. Once I knew actually I had these sensory issues, it was like, oh, I don't feel in danger, it's just there's a spot like there. I can hear that fridge buzzing, those people out there having an argument, and I can hear all of it. And I'm trying to focus on the person I'm actually with. And once I realized that's what was going on, I didn't feel in danger. But I've been trained to think. That's what I thought, because that's why I must be having these panic attacks.

Amy: 1:39

Welcome to Advancing with Amy's Mental Health Warrior and Neuro Spicy Mama, where we dive into real stories, unfiltered experiences and powerful insights about mental health, neurodivergence and living your most authentic life. I'm your host, amy, and today's episode is all about discovery, validation and empowerment as we sit down with the incredible Eden Gruger. Eden shares her late-diagnosed autism journey, the challenges and triumphs of understanding herself and how embracing her neurodivergence transformed her world. This is an honest, heartfelt conversation. You won't want to miss it. Let's jump in. You won't want to miss it. Let's jump in. All right, everybody, today we're speaking to Eden Gruger, eden, welcome. Thank you, amy. Glad to be here. Oh, glad to have you.

Eden: 2:42

Tell me a little bit about how you found out that you had autism. So it was actually social media. A lot of people are sneery about social media, but it can work for good as well as ill. So I followed this couple. They just popped up on my TikTok and I was interested because the lady had blue hair. So it caught my attention and so I followed this couple and it's called ADHD Love and she had ADHD and he was apparently neurotypical. But the bit that caught my attention was that he said oh, I've just done this questionnaire and I've discovered that I'm autistic, and they were talking about that, and so I love questionnaires. I mean that's a clue in itself and I thought I'm going to do that of questionnaires. I mean that's a clue in itself and I thought I'm going to do that, so it's called the RADS questionnaire.

Eden: 3:36

So I did this, did it, and so it's 60 is the average neurotypical female score. The most she could score was 200 and I scored 175. I scored 175. I know right. So I laughed for about three quarters of an hour and then I thought well, that was obviously wrong. So I did it again in a bit of a temper and I scored 185. So then the next day I was telling my assistants, I was telling my friends and they were kind of you know, there could be something in it. So I started to do some research. The more I heard about autism in females, the more I thought this sounds familiar. So I decided to go ahead and get a facial diagnosis. And yeah, and I did. That happened last summer and I'm official.

Amy: 4:24

I've got the badge. So for those out there that might think they have autism too, can you explain a little bit about what the professional testing was like?

Eden: 4:32

Yeah, so the first stage with the people that I saw was that myself, my dad and my best friend all did questionnaires about what I'm like, how I interact, what I'm like day to day, and a lot of my questionnaire was about the things that I'm secretly thinking and things that I'm doing in ways that I felt like there was a disconnect between myself and the other people. So that was the first stage. And then I went and we had a meeting with a psychologist and then I had a three-hour meeting with a speech and language therapist and they did lots of different tests. They didn't feel like tests, but that's because I like tests. So, but it was kind of almost like some of them were like word games, things like that, love that stuff, yeah. And then you go away for an hour, they have a conference about you, come back and then they tell you what they think. And I did a really autistic thing in my assessment. So she said yes, we think you are, and so I had a bit of a cry. She said why are you crying? I said because I kind of thought you would say that, but to hear that it's a real thing, that's validating but also confusing.

Eden: 6:01

I was 50 then and it felt like how can I be 50 and just finding this out myself? Um, and then we talked a bit and then it went quiet and I thought, ah, it's, it's coming to an end, now it's time for us to go. And then the chat started up again. I was, okay, no, it's not time to go. And then it died down again. I thought, oh, it's time to go. And no, it wasn't.

Eden: 6:20

And this happened three or four times and in the end there was a. I said sorry, is this the time when I go? I was like when is this going to end? I don't know the signals. I'm much better If I go to someone's house. I'd much rather they say you know, I'll drop you off at seven or I've got people coming, so I know when the end is. Like how do you really know when is the end? How do you know? How do you know you're not out staying, you're welcome. Are they really thinking, oh, I wish you would go, or are they happy that you're there? How do you know? I don't know, right? So yeah, so yeah, it was really fun. And I cried all the way home I have to say that home and I was saying to my best friend who'd gone with me. Well, maybe they made a mistake. And she said I love you. They didn't make a mistake and we all need that friend, so yeah, Well that's good, that your friends and family support you.

Eden: 7:18

Yeah, I mean, I think my dad, my dad's 78. So he is just kind of really unsure about the whole thing because he feels like, well, we didn't have it. And when he was on holiday I phoned him to tell him the results and he said, well, what are they going to do about it? That was his first instinct. Well, what are they going to do about it? And I said, well, short of a brain transplant, you're stuck with me. This is how I am. Good news, also less good news, and we just had a bit of a laugh about it.

Eden: 7:52

But, yeah, I think because I was the disruptive child. I was a child that always had the questions that you might ask me to do something, and I'm going to clarify that. You know which, when you're a child and when you grew up in the 70s, that was not a good look, you know. It's just, I've told you to do this. I'm the parent, you will do the thing, and I'd be. I will do it, but I want to know why. I want to know what's this, and that was tricky for them, for sure.

Eden: 8:21

That makes sense, and I was very yeah, I was very into everything and you know I was that, I was the autistic kid that liked reading encyclopedias. I was that kind of autistic kid. So, yeah, I was all right with reading, but you know I I guess I was not the easiest to parent when you didn't have the full manual that's a good way to look at it.

Amy: 8:44

You didn't have the full manual. I love that, yeah, yeah, because when my daughter was finally diagnosed at 12, I totally changed the way I parent her. It was a whole new world. So yeah, that diagnosis does help.

Eden: 8:59

And that's fabulous that you were able to say that what you were doing maybe wasn't the right fit for her and it would be fantastic for another kid, but you needed to do it differently and I think that's a really precious thing if you can be that parent, right, right.

Amy: 9:14

Yeah, because my son has ADHD, but that's it. And I had parented him the way I had started parenting my daughter and it was not working the way I had started parenting my daughter and it was not worth reading. So tell me a little bit more, because you also said I was reading that you have a little bit of trouble being alone. Can you talk?

Eden: 9:36

about that a little bit. Yeah, so, because I always had super high anxiety, mainly because of these sensory issues, because I didn't know I had, and I was told I was put into therapy as soon as I, you know, I was, I think, about 12, as soon as it really started and and I just I had this phobia of being alone. It's hard to say where it came from. There's a million reasons and no reasons, if you know what I mean. And I went into therapy and there was lots of different techniques that they tried, that they offered to me, including medication which I refused to take, and none of the solutions that they offered seemed to make the science a bit different. And they would ask me, as a 12 and 13-year-old well, how do you feel? I don't know, I don't know.

Eden: 10:33

And because I didn't have the language and even as I grew older, I have a lot of feelings, but actually articulating what they are, that's a different kettle of fish and it's, yeah, a lot of times people think and I've heard lots of people say, oh, autistic people, they don't have a full range of feelings. Yeah, we really, really do, it's just that we don't articulate them in the same way and also we can't name them. It's just that we don't articulate them in the same way and also we can't name them. It's just a big feeling, and so my feelings were coming out in panic attacks, and then this gradually turned into a phobia, of a real phobia of being on my own, which, as you can imagine, is tricky that's understatement of the millennium. Yeah, so that's been really tricky. I, you know I'm working on it all the time, but yeah, I'm just never on my own at the moment, and that's a shame, because I love my own comfort.

Amy: 11:41

So do you live alone.

Eden: 11:44

So do you live alone? So I have my own home, but I so I have. So here in the UK there's something called a personal budget that you can get if you are a disabled person, that everybody's entitled to a personal budget. Now don't get me wrong, you have to fight for it. They don't just give it to you. But if you, if you have approvable needs that you need support to do to live an independent life, which luckily I was able to prove that and I fought for it and I got a budget. So I have some money that means that I can employ assistance. So I, when I'm home, I have some money that means that I can employ assistance. So when I'm home, I have my assistants at home with me and otherwise I'm with my dad, and luckily I always say he's my dad, but he's also my mate, so we're really fortunate that we get on and he's very mellow, which is handy.

Amy: 12:42

That is nice. Well, it's good that you found a way to kind of work around it and to give yourself a good life.

Eden: 12:50

Yeah.

Amy: 12:51

Yeah.

Eden: 12:51

I would like, you know, I would like my independence back and you know, and it is a work in progress, I've not given up on it, but it's tricky to it's tricky to maneuver. I mean, everyone's got stuff in their life that's tricky to it's tricky to maneuver. I mean everyone's got stuff in their life that's tricky. You know, I'm not out of the ordinary. My circumstances might appear out of the ordinary, but we've all got stuff.

Amy: 13:16

Oh, definitely. Can you tell me a little about what exactly happens when you have an anxiety attack? What exactly?

Eden: 13:24

happens when you have an anxiety attack. Yeah, so for me it is an instantaneous. It's like my what I call my me brain. So my I'm currently 51, so my 51-year-old brain turns off and it's like I can't process what I'm supposed to be doing. I have, obviously, all the classics the shaking, the palpitations, the feeling faint, the breathlessness, the wobbly legs, pins and needles in the hand. I have all the classics, the good old classics.

Eden: 14:01

But I also feel I think the best way to describe it is I feel like I need to escape myself. I think that's the best way I can explain it and you can't do that. I tend to um, I want to run, but you can't run because that's not safe and also my legs are wobbly, I can't breathe. How am I going to be running? So, yeah, in the moment it feels the worst.

Eden: 14:33

I know, intellectually and logically, you know, I know that nothing's going to happen, but, as I've, you know, and there's lots of memes that say never in the history of calming down has anyone ever calmed down from being told to calm down, and that's, you know, logically, I know what it is, but in the moment that does not matter, right? So what do you do to calm down, so I try to remember to breathe. That's a super important one, sounds easy, but I know I talk to myself. That's a super important one, sounds easy, but I know I talk to myself. I'm a massive verbal processor. So I talk to myself and I remind myself that nothing is actually happening, that I'm okay, I'm wherever I am, and I will sort of say, oh right, come on, let's get ourselves a glass of water and oh, let's chat with the dog.

Eden: 15:24

And you know, I have this external monologue to try and I guess, to keep myself present because in the present, nothing is actually happening. It's the future worry and also maybe past experiences that couple together, that add fuel to the panic fire. I think a lot of us maybe like that, but I'm open to hearing people's different experiences, for sure. But yeah, that's I think that's what it's me, that I'm projecting a negative outcome. So, yeah, I've just tried to keep myself present and the dog. If I feel I sing to my dog, he doesn't like it, but I will do it One of the disadvantages of being my dog, I'm afraid that's funny.

Eden: 16:15

It doesn't mean it's funny.

Amy: 16:17

When you're calming down and you've basically got to the point where you can breathe again and all that good stuff. Are you able to go back to what you were doing?

Eden: 16:30

Yeah, I try to. Yeah, I mean what I try to do. So I'll give you an example. So for my dad's birthday he's 78, but he's still super adventurous. So he decided he wanted to do an indoor skydive for his birthday, which was in March, and I booked it for him. He asked me to go with him.

Eden: 16:51

I had one of my assistants with me, so he went up on the train and we drove and met him there and I assumed that it was going to be outside, but when we got there, no, it was inside this huge center in London and um I one of the things as an autistic person that really bothers me is lines, so I I just don't seem to be able to filter them. So we went into this place and there were floor tiles running one way and then there was wood cladding going another way, and then there was ceiling tiles going another way, and then there was spotlight and there was music and there and I walked in and I thought, wow, this is a lot. So we stopped in the entrance hallway, I took some breaths and I knew that I'm always nearly always late for everything. So I thought, come on, we need to start walking. I started walking and I just stopped. I couldn't. I couldn't walk forward, I couldn't walk backwards, and I was talking to my assistant and she was talking to me and I just couldn't move and all I wanted was to get out, because shutting my eyes wasn't going to help, because I needed to stay present. But everywhere I looked it was like stimulation overload. I was feeling super panicky.

Eden: 18:02

But we came out, we went back in, we came out, we went back in and eventually it calmed down and so I I did walk, I will go. So, if you know, I try to. I don't want to end on a note of I had to stop this because I panicked, because then the next time I need to go into that situation, I should think, yeah, but that I had to leave last time because I panicked. It's not a good outcome. So I need to. Once I feel okay which, once it happens then I normally feel, conversely, really, really relaxed, and I think it's just because I'm so relieved that I'm not panicking anymore that I suddenly feel super relaxed. I'm like, yeah, I can do that, that's easy, and then I'll do the thing so you get tired after that.

Amy: 18:54

I'm so tired. Yeah, lover, big lover of the afternoon, nap me too, but I don't have any excuse, that's not, you know, um, but no, and I know.

Eden: 18:59

I think that's the other thing. That's been a major thing for me to understand that my energy works. It doesn't work the way I might like it to. So if I've done something and it's a big thing I'm going to be tired. If I've had an eight nights and I'm asking myself to do something, it's going to be more of a problem. If I haven't eaten properly, it's going to be a problem.

Eden: 19:19

So I need to take I really need to take care of myself we all do but I need to be extra mindful to make sure that I've eaten not just a breakfast, but a proper breakfast with lots of protein, so that I've got the energy to do the thing. And then I will need a late night, an early night, if I've had a late night, to balance it out. So I think we all have our quirks and our foibles, and I think we're all in the same position that as we get older, especially as we head into midlife, that we want to really know ourselves and be mindful and respectful of what we actually need, and me finding out I was autistic was just another string to that actually need. And me finding out I was autistic was just another string to that. Um, you know, so I, yeah. I think we're probably all on the same journey, but on different paths.

Amy: 20:13

Do you look back at your childhood and things stand out now that you go? Oh, that makes sense now definitely, yeah, definitely.

Eden: 20:22

Loud noises and things like that were always a big problem. And I very clearly remember I was in infant school, so I guess I was four, maybe five and we were having a music lesson and they were drumming and it was driving me nuts. And this kid and I even remember his name I won't say it, but he even remember his first and surname and he started screaming and I thought, oh well, I can't scream now, even though I'd love to, because they're going to think I'm just copying him. That's why girls are masking that's funny, but you know I don't.

Eden: 20:56

I learned to read um before I went to school and they were sending me from the infant school across to the junior school to go to their library because I'd read all the infant books and I was too advanced for what they could offer. Again, I think that's quite an average autistic experience. Yeah, I agree, at least with my daughter, at least.

Amy: 21:18

Yeah, yeah, yeah. So when you're having this experience, do you notice at all what other people are, how they're reacting to it, or do you worry about that, or are you just too in the moment? I?

Eden: 21:32

think that when I was younger I was super focused on what other people were thinking. As I've got older and I've asked people that have been with me, they say from the outside you wouldn't know anything was happening and so it's all red alarm inside, but on the outside it's all calm, which in a way is good because you know it means that I can pass through the world as an acceptable human being. Even the fact that I say that shows how I really feel about it, that you know, having panic disorders and stuff is not socially acceptable. It's not because you're being inconvenient. You're probably being loud, you might be being disruptive, and that's not how society is set up.

Amy: 22:22

You need to just be mellow, be quiet, earn your money, pay your taxes, shut up and yeah, not doing that, unfortunately we have another question, um do you have friends or do you know anybody else? That is a female adult with autism um, so not officially, but um.

Eden: 23:51

So I struggled terribly with friendships. Female friendships were a complete bizarre experience to me, because I am very blunt and um, and people will be talking to you about things and they don't want to hear that you think their boyfriend is absolutely bad news or that they're making terrible life choices or that their dress looks horrible. I now know these things, but when, particularly when I was younger, and I would just think but surely people want the truth and the truth is, amy, no, they don't right they don't.

Eden: 24:31

I do and and a lot of people do, but they don't want the pure, unadulterated, unfiltered truth. They want a managed truth. Yeah, um so, but I have. I've definitely learned to be better but and and. So because I didn't, I tried really hard to fit in and I think if you're trying to fit in but you don't, it is jarring to people because they know something's off and they don't know what it is. But it's incongruous because they know something's not right but you're presenting as if you are like them, but they can sort of tell somehow that you're not. So, yeah, it didn't go well.

Eden: 25:07

However, in the last year, I've made a couple of really, really good friends, sort of say since the beginning of 2024. And one of those, she was diagnosed with ADHD, which I know it's different. We are on a wavelength. And then I have another really really excellent friend, who is even blunter than me, which I love, and I spoke to her just before I came on to speak to you and she said I know I'm not diagnosed, but I'm definitely something. And I said you are definitely something and I'm sure she's definitely neurodiverse. Because yeah've just, and we, our conversations, they start in one place and they go, and one minute we're talking about this and then we one of us has changed it, but we pick up the ball and we just run.

Eden: 25:57

We're just there so yeah, and then I have another friend who is a bit younger, who is really autistic, is waiting on her official diagnosis. Yeah, and you know that's really interesting seeing how she's coping with that. With someone in their 20s it's a really different experience because she's still got all that desire to fit in Right.

Amy: 26:23

I'm curious when you say you were blunt and now you've learned not to be you know pretty much Do you get bothered by that feeling? Is it like, oh my God, I want to say this, but I can't?

Eden: 26:37

Sometimes, but I think when I so my big thing would be if somebody was really annoying me, I would want to say you are really annoying me and this is why you're annoying me and I need you to stop, because I feel like I want to punch you. I'm not going to punch anybody, it's just that I. It's that level of annoyance. But what I've realized is that I might just I absolutely might be that annoyed, but is that person going to feel okay with that message, Because they aren't wanting to annoy me? Or is there a different way that I could say? Is there a different way I could say or I've just I've literally just listened to the Mel Robbins book Let them so, let them do whatever, let me do whatever.

Eden: 27:34

And honestly, that's been a game changer, because you know, if someone's being annoying or if there's something that I think I'll just say this thing because I think they're doing whatever or whatever, that I just say to myself just say this thing, because I think they're doing whatever or whatever. That I just say to myself. Do you know what? Let them be annoying, let them make this mistake, let me just be here for them if things don't go well, let me carry on being their cheerleader. Let me remove myself. Let me put my earbuds in, so I haven't got to listen to this Something other than me saying, do you know what? Blah, blah, blah, blah, blah. Because if you, even if you are in my world, I'm saying things with the deepest love and respect. It's not received like that right and that's not good, because I love the people and I'm not wanting to hurt them or squish their feelings. That makes sense.

Amy: 28:30

yeah and I. I listened to that audiobook too, and it was amazing. It makes you much more relaxed when you're in a situation that is not, you know, the optimum definitely and and as humans, she's absolutely right.

Eden: 28:46

we feel safe when we're in control, and we are not in control of the vast majority of everything.

Amy: 28:53

Oh, that's so true. The only thing we're in control of is how we react to things.

Eden: 28:58

Absolutely.

Amy: 29:00

Yeah, Now you've actually written?

Eden: 29:07

have you written about these subjects? So I have written for just checking for myself. Yes, I've written four fiction collections that are particularly the one about friendship is very much from the point of view of being a neurodiverse woman navigating female friendships the first three that I'd written before I even knew I was autistic. But people have read them and said, yeah, you, you can tell that you're writing from a different point of view. So I don't think I could write in a different way because I am myself. So you know, I know we, we are writing. We're not writing about ourselves, but I think if your brain works in this different way, you can't help but write in the way that your brain works. I don't, that's Right, right. So I have my four fiction collections, which are collections of short stories around topics.

Eden: 30:06

So the first one's dating. The second one is called laughing at myself. The second one, and that was a lot about mess-ups that I have made a lot of times through being diverse and not knowing, and I've just learned to laugh at myself. Because what else are you going to do? I don't want to sit in a corner crying and feeling miserable about myself. I want to be able to laugh at myself. So that was that one. And then there's Friends, and then there's another one which is just a short collection called Funny Bird, and that was a range of things. There's one about a taxi driver, there's one about a therapist. You know, that's a bit of a anti-collection collection. Yeah.

Amy: 30:51

I'm really interested in in the book that you wrote about friendship. So what is that? A book that would be good for a teenager at all? I'm wondering about my daughter potentially potentially, I mean, it's not got.

Eden: 31:06

I think that female friendship, yeah, I mean, I would say that, um, you know, once a teenager gets to a point where they're a real teenager and they're not like a child on the cusp, and they are really questioning how is this working, yeah, I like to think that any woman, young or older, would be able to read it and think also it's not just me. You know, there are things about female friendship that are confusing, that there are ways of being that are not necessarily okay, and we talk very much and it's absolutely great that we talk to cheerlead each other, but there are some people they're not good for you and they shouldn't get to be your friend because they're not good enough, and that's talked about in. You know some of the stories as well, that you know things that are not great and you know how the characters navigate that. So, yeah, what's the name of the book? Friends Like these. Oh, I like that, and that comes from the. You know the saying we're friends like these who need enemies.

Amy: 32:17

I like that. That is clever Good, All right. Well, I have really enjoyed talking to you today, so is there anything you'd like to say to listeners that might be going through the same thing right now wondering hey, I'm 50, is it even worth getting diagnosed? I?

Eden: 32:35

think, personally, it is worth getting diagnosed, if nothing else but to validate your experience. Your experience, so and it is a self-diagnosis, and that's where I started that's really important, really important to know who you are, why you are and what do you need to do to be your most content and calm version of yourself. But as, particularly if we are dealing with professionals, everything has got to be anxiety or hormone, doesn't it? That's our choices. You can be anxious and depressed, or you can have weird hormones. You can't just have something else or be different or need something else, and so I think anything that enables us to go to these professionals when we need help, support, advice, treatment for anything, for anything at all, if we can say, look, this is my situation, this is the reality, and get it on your records, so much the better.

Amy: 33:50

Yeah, I love that. I tend to agree with you. I think a diagnosis is very helpful. Well, thank you so much for coming on today, Eden. I really appreciate it.

Amy: 34:01

Thank you so much for joining us on this episode of Advancing with Amy's Mental Health Warrior and NeuroSpicy Mama. A huge thank you to our guest Eden for sharing her story with such honesty, humor and wisdom. If Eden's journey resonated with you or you learned something new about autism or anxiety or the power of self-discovery, remember you're not alone and it's never too late to understand yourself more deeply. If you enjoyed today's conversation, be sure to subscribe, leave a review and share this episode with someone who needs it. Until next time, keep advancing, warrior. Thank you.