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Late Diagnosis Of Autism with Purple Ella
411 Plays2 years ago
What STOPS people getting a diagnosis? What positives or negatives can you expect?
Purple Ella is a renowned Autism, Disability and ADHD advocate with their hands in many pots; perhaps best known for their YouTube channel and social media... Ella seeks to shine a light on areas lacking in Autism awareness and holistic support!
In this episode of the Thoughty Auti Podcast, Thomas Henley talks to Ella about his experience of being diagnosed young, comparing and contrasting his experiences with Ella's experience of being diagnosed later in life.
Kicking off the conversation, they talk all about Ella's Autism Assistance Dog 'Coco' and some of the difficulties of access and social engagement that come with her. Ella informs us of their previous employment in performing arts at a circus group, and how that shaped their predilection for the online entertainment!
Post-diagnosis, Ella explains the process of looking back on their previous life experiences and realising moments where they attributed Autistic struggles to being "a bad human being". They also cover their experiences with pregnancy and their relationship with their husband, concluding with how much an Autism diagnosis made a positive impact on their collective lives.
The two talk about ways people can start Unmasking, re-writing your life narrative, accepting yourself, and processing trauma... in this AMAZING episode!
If you have an exciting or interesting story and want to appear on the next podcast, please contact me at: aspergersgrowth@gmail.com
Ella's Links:-
Website - https://www.purpleella.com/
YouTube - https://www.youtube.com/user/purplemumify
Instagram - https://www.instagram.com/purpleellaandcoco/
Song Of The Day (Listen Here) - https://open.spotify.com/playlist/5UDIyN5TSYN4zMcRoQPrG8?si=9255ed3480d840b5
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Website - https://www.thomashenley.co.uk
♫ THOUGHTY AUTI PODCAST Get it on Spotify free here - https://open.spotify.com/show/6vjXgCB7Q3FwtQ2YqPjnEV
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Support via Patreon! - https://www.patreon.com/aspergersgrowth
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Transcript
Introduction to the Podcast
00:00:07
Speaker
Good day, my lovely listeners. You are listening to the 40 Auti Podcast. Tune in every week to explore inspiring stories and insightful information that dive headfirst into the world of autism and mental health. With all those tantalizing tongue twisters out of the way, let's get into the show.
Host and Guest Introductions
00:00:41
Speaker
Good day, my wonderful people, and welcome back again to the 4080 podcast with your host today, Mr. Thomas Henley, as usual. It's a bit of a glum day today in good old UK, or at least up north. I have recently come down with a bit of sickness. I think there's a bug going around in my local area, because it seems that both my girlfriend and brother have both got pretty sick from it.
00:01:10
Speaker
But I am all good, so don't worry about me. Today we have a podcast with none other than Purple Ella, and we're going to be talking about late diagnosis of autism, what it looks like, the kind of things that you can expect, the things that perhaps may be holding you back from going and getting a diagnosis.
00:01:37
Speaker
Ella is an amazing person to talk to and I won't talk too much.
Purple Ella's Background and Advocacy
00:01:43
Speaker
So Ella, how are you doing today? Yeah, I'm okay. I'm a little bit tired to be honest, but feeling good about life in general, I think. Good, so it's really great to hear. Would you like to give everybody a little bit of a background into the kind of work that you do?
00:02:03
Speaker
Who am I? I am a late diagnosed autistic adult. I was diagnosed in my mid thirties and I'm also the mother to two autistic children. And another child who isn't autistic, who I always feel like I need to mention because I'm like two autistic children, but I actually have three children. And when I got my autism diagnosis, I have a background as a performer. I was actually a circus artist in my former life. Really? I did not know that.
00:02:29
Speaker
Yeah so I used to do acrobatics and juggling and you know, street performing, stage performing. I guess I just like performing, always have done. So when I got my diagnosis, I guess I started making YouTube videos as a way partly to kind of process. I'm a verbal processor.
00:02:48
Speaker
So partly as a way to process my experience that I was having but also partly to share my experience thinking like it might benefit other people in a similar situation because at that time it wasn't an unusual thing to be the mother of an autistic child realizing that you yourself are also autistic, right? So that was seven years ago. That'll be seven years ago in June.
00:03:08
Speaker
And since then it's kind of become my job which is wild so i make content on a variety of social platforms now youtube mostly youtube and tiktok but also a little bit on instagram and i also make content for other people so i made a video for the nhs recently for
00:03:27
Speaker
people who are training in supporting autistic people in crisis. So crisis services, inpatient services, they commissioned me to make a video for them to use as part of their training so that I can actually tell all those doctors and nurses in those situations what we actually need them to do, which is amazing. We do need that.
00:03:44
Speaker
Yeah, it's great to be able to do stuff like that where you feel like you're actually maybe even affecting systemic change, you know? And I made some content recently for clinical partners. I'm not entirely sure how they're going to use it. I think it's going to be on YouTube. I'll keep people posted. But that was a super fun experience where I got to not do any of the, you'll know as a podcast host, you're the promoter, you're the artist, you're the scriptor, you're the editor.
00:04:10
Speaker
In this case, I was able to just turn up and say things and someone else is doing all the rest of the work. That's the dream. Living the dream. Yeah, so I also do consultancy, public speaking. Basically, I've got my fingers in a lot of pots, but I suppose I'm specifically interested in mental health and autism, gender experience and autism because my eldest autistic child is trans and I am non binary.
00:04:33
Speaker
And I'd also really like to get my finger into the pot of the justice system at some point because I feel like there's a lot of ADHDers sitting in the justice system and I'd like to understand why and what I can do to help there. So I'm just doing everything that I can really to support autistic people as part of my own journey learning about my own, you know, neurodivergence.
00:04:55
Speaker
Well, from what you're telling me, it sounds like we're quite similar in our focuses because mental health and autism tends to be like the top thing for me to kind of tackle
Assistance Dogs and Public Perception
00:05:08
Speaker
it. So it's a really big issue, isn't it, in the autistic community?
00:05:14
Speaker
One thing I wanted to ask you about, because on Instagram, your name is purple Ella and Coco. And before we got here to chat, I had a look at your YouTube channel and your video about autism assistance dogs. Would you like to tell everybody a little bit about what it is like to have a Coco in your life?
00:05:40
Speaker
Yeah, I mean, I can talk about dogs all day long, so happy to dive into that one. Yeah, so I've had Coco since she was a puppy and have owner trained her as my assistant's dog with the support of an organization that supports with things like trainers and insurance and stuff to help you do that in a kind of supported way. Did that make any sense? Yeah, so I would say working with Coco has been life changing for me in that
00:06:07
Speaker
I'm now able to attend hospital appointments and go shopping and stuff on my own where previously I would've had to have made my husband take the day off work and come and do it with me. It's challenging, so I always like to say that on the one hand, I've got this amazing
00:06:26
Speaker
support and relationship with this animal that I absolutely adore and who is the most uncomplicated relationship that I have in that I'm never worrying, you know, you're autistic, I'm never worrying, does she like me? Did I say the wrong thing? What does that facial expression mean? You know, she's just like solidly consistently the way she is and she doesn't answer back and she never disagrees with me, which I loved.
00:06:50
Speaker
Yeah, yeah, exactly. But on the other hand, especially if you're on a training in assistance dog, and especially if you're quite a black and white thinker, they're not perfect. Not even guide dogs who are blind are perfectly behaved all the time. And I think I kind of thought they were before I became an assistance dog handler. I kind of thought an assistance dog was just almost like a robot that never had a bad day, right? But they do, they have bad days. And sometimes the training doesn't work. And that can be really frustrating.
00:07:15
Speaker
And no matter how I'm feeling, I've got to walk her and I've got to care for her, you know, which can be a good thing because it kind of keeps you motivated, but can also be a bit of a challenge. But for me, I absolutely love working with Coco and I'm also the ambassador, one of the ambassadors for Dogs for Autism, who are a charity in the UK who provide fully trained assistant dogs to autistic people of all ages.
00:07:39
Speaker
Which is awesome because actually all the other charities are doing brilliant work, but no one's working with autistic adults apart from these guys in the UK. Yeah. I kind of, I kind of really care about this. Yeah. I think the, the looking after and the walking and the, the feeding is, um, cause I, I've, you know, thought about getting an, an assistance dog because throughout my life I've had.
00:08:04
Speaker
I mean, my big brother was a dog. Lovely mongrel from the kennel called Bob. Called him Bobby Dog. Great dog name. I think he lived up until he was about 14 or 15. He was definitely a massive emotional support for me. I think the issue for me comes in that
00:08:29
Speaker
I still haven't sorted out all the executive functioning issues that I have and you know even getting myself to eat and getting myself out to a walk would be difficult. One thing that I
00:08:42
Speaker
that I sort of picked up when you were talking about autism assistance dogs is that you've had a lot of difficulties with accessing venues, places that should be accessible. And I think you said in the video that denying someone who has an assistance dog into a venue is against the law. It's a reasonable adjustment.
00:09:08
Speaker
Have you had many experiences like that or is it more of an isolated?
00:09:14
Speaker
Yeah. No, unfortunately it does happen regularly. And I kind of thought it was maybe happening regularly to me because I work with a dog that doesn't look like most assistance dogs, you see kind of black labs or golden retrievers, right? Whereas Coco is a small fluffy dog. So I thought maybe it's that maybe people aren't used to seeing that, but I've been following, um, YouTube and Molly Burke, who is blind and she works with a guide dog and she has access problems. And I'm like, if someone with the most well-known, most obviously working dogs,
00:09:43
Speaker
Is having problems with access we all are right yeah i'm so what i started to do is i have i found it really stressful for the first year or so of working with coco having to explain every time actually we are covered by the quality law actually do you have to let it in and you know dealing with that was like almost more anxiety provoking than not having the dog in some instances yeah.
00:10:06
Speaker
I think there was one particular memorable instance when I wasn't allowed to do a COVID PCR test with her. They just wouldn't let me in. And not only would they not let me in, but they were quite aggressive in their manner with me. So that was quite stressful. So after that particular incident with a big kind of beefy fancy guy.
00:10:24
Speaker
Yeah, it was a lot. After that, I realized that what I could do was, and this is kind of anyone that's got a dog, assistance dog, you can do this, is I got from Etsy a card that has a QR code that I can literally just go, just scan this. And it takes them to a place where all the lore around assistance dogs is explained. And since I've been using that, it's gotten a lot easier because I'm just like, here's my card, just do it. And half the time they don't even scan it. They're just like, all right, okay then.
00:10:50
Speaker
But it saves, I think as an autistic person, anything that saves the need to do more communication than I have to is a helpful thing. Yeah, especially with bounces. I have a particular aversion to any security or security staff or bounces because I'm very heavily PDA.
00:11:12
Speaker
And I find it really difficult. There's been sometimes that sometimes when I've gone to like the pub with my friends or or something and it's I always find I always find myself getting very on edge and very annoyed around the security stuff.
00:11:33
Speaker
Yeah, well, I'm not going to say that I walked away shouting words that I wouldn't use in this podcast at Sky in the end. That might have been what happened. They're just so...
00:11:44
Speaker
I could go on about it forever. Yeah, he basically treated me like I was a precious Karen. And I think as a white female presenting middle-aged person, the Karen kind of meme or however you would describe it has not been helpful for me. Because for example, like a couple of days ago, I was having to say to someone, why don't you have a blue badge parking space, a disabled parking space? I needed one. You don't have one. You've got a 20 car car.
00:12:14
Speaker
You've got a 20 car park, I can't say it. 20 car car park. And the way they treated me was like I was being a Karen. And I wasn't saying, mate, my coffee isn't the right temperature. I was saying, I have an access need that you're not meeting, but I feel like I get that vibe a lot. And this security guard was definitely giving me that. I just think you're a precious Karen type. I can imagine that you...
00:12:41
Speaker
You have to deal with those circumstances where people don't let you in because of Coco a lot. So I imagine that it's quite like, oh, here we go again. Honestly, I think the biggest problem is not so much that because at least in that situation, I know that the law is on my side. I've talked about it enough now to know that the law is on my side that I can handle it. The biggest problem is people who want to pet her. Yes.
00:13:07
Speaker
I get so every single time I leave the house with my assistant's dog.
00:13:12
Speaker
50% of the people we come across will want to pet her or interact with her. And that's really difficult because I've spent a long time training her to ignore people when we're working. So if they're trying to do that, that's a really mixed message for her. And so then I'm having to say to people, sometimes like really cute elderly people or people with children, you know, so you feel awful, like actually, can you just ignore her? And I don't know how to say it in a way, and because I'm autistic, I don't know how I'm struggling to say it in a way that doesn't sound mean.
00:13:41
Speaker
And I find that that's probably the biggest problem, more than the kind of access thing. So if anyone listening to this podcast takes anything away from what I'm saying, it's if you see a service dog or an assistant's dog working, don't even look at them. Just ignore them. I suppose there's a lot of unexpected and unwanted social interaction when you're just kind of wanting to go out for a day. But dogs are definitely a magnet to a lot of people.
00:14:06
Speaker
Yeah. I mean, it can be good. I don't want to leave on an entirely negative. It can be a positive. It can mean that I have a nice little social interaction with someone with a very scripted, easy, you know, topic. But in general, if you see me about with my dog, if you could just ignore us, that'd be brilliant. Brilliant. I'm thinking now might be a good time to get into the meat of the podcast to talk about late diagnosis. Sure.
00:14:35
Speaker
As a person who was diagnosed at the age of 10, I don't have a lot of experience with...
Experiences with Late Autism Diagnosis
00:14:42
Speaker
I can sort of imagine what it may be like because when I got diagnosed I didn't have access to all the resources that I have today like the
00:14:53
Speaker
the knowledge and the experiential knowledge from other people. And so it was only until in my 20s that I really started to kind of process what autism was and how it made me different and, you know, all of that kind of stuff. So I want to know is what was your life experience like up until the point you realized that you were autistic and what changed?
00:15:23
Speaker
Yeah, okay, that is a big question. It is a big question, yeah. And I don't want to be entirely negative, because obviously, you know, life is a series of emotions and ups and downs, and they were good bits, you know, but it did, I'd say, I don't really remember my childhood a huge amount, which apparently is quite common in autistic people, or so my therapist tells me.
00:15:44
Speaker
But I would say from my teenage years, I definitely had a real strong feeling that I wasn't good enough, that whatever I was doing wasn't working and that my main aim was to try and be more like the people who were winning at life. So I spent my teens and my 20s trying to be somebody else or trying to build an acceptable personality that would stop people from taking an instant disliking to me. I would often feel that.
00:16:13
Speaker
Not everybody of course i had friends and you know i'm married my husband during that time but i'm. I just they would they would just to regularly be times when people would just like be like within five minutes be like oh my god this person is so annoying or so whatever i just felt like i was getting it wrong and that was really depressing and so at the same time i guess i started experiencing mental health problems in my. Late teens early twenties you know depression anxiety.
00:16:40
Speaker
It just felt like life was a struggle and my main aim in life was to figure out what on earth was wrong with me so that I could be better and happier. And during that time, I also had three children. And so I went through pregnancy and childbirth and postnatal experience without the knowledge that I'm autistic. And that was really, really hard because now that I look back on that and I think, you know,
00:17:07
Speaker
of the struggles that i had because when you have a baby your whole routine is just like gone there is no routine there is nothing in your life that looks the same as it did yesterday when you're still pregnant and going through that not knowing i was autistic and so just experiencing the way that i'm sure you can imagine you would freak out if that happened to you.
00:17:27
Speaker
without the knowledge of why this was happening to my brain or why I was kind of having these experiences was really, really hard. And the other thing that I'd say was really hard was I'm a meltdowner. You don't meet many adult meltdowners. So it's a little bit. I'm happy to put my hand up. I'm an adult meltdowner as well.
00:17:47
Speaker
Amazing. Most people are like, Oh, yeah, I didn't really melt down. I shut down. And I'm like, No, you'll know about it when I go. So, but like having meltdowns, but having no idea they were meltdowns makes you feel like maybe you're just a bad person who loses their, you know, loses their
00:18:05
Speaker
I'm trying to find words that aren't swear words and loses their sense of like rationality on a regular basis. And so I would be looking at other people and being like, why can't I keep it together like everyone else? I would be taking my children to birthday parties, getting lost on the way there and then ending up having meltdowns because I couldn't find out where I was going and we were going to be late and not knowing why, you know. I imagine they could sort of produce a lot of faults in your brain and like, am I crazy? Like,
00:18:35
Speaker
Is this a seizure that I'm having or like? Yeah. Or am I just like a really bad person or, you know, yeah, I just didn't know why. And I also would end up getting so like, I ended up not being able to access mental health services because I'd had a meltdown and they decided that that was like unacceptable behavior so they wouldn't work with me anymore. Really? You know, like stuff like that happened. Really? That happens.
Processing Autism Diagnosis and Identity
00:19:00
Speaker
Yeah that happens it really really does yeah this is why i'm so keen to work in mental health services these days so yeah that was really hard and then i'm getting that diagnosis you know after my eldest child was diagnosed.
00:19:16
Speaker
I thought when I, when I realized I was autistic, but before I'd been assessed and been diagnosed, it was a bit of a relief. And like, I think often late diagnosed autistics, when you first have that realization, it becomes this like obsession. Like all I could think about, talk about was autism and whether I might be autistic. And it was like, almost like a new fun special interest. Um, and then I got the actual diagnosis and I thought I was going to be thrilled. And actually I wasn't, I felt
00:19:43
Speaker
I think I felt, I think part of me before I got the diagnosis thought I'd made the whole thing up in my head and I was going to see a doctor and they were going to be like, well, go away. And when they were like, they were like, this is really an easy diagnosis. I was like, oh my goodness. And not only am I autistic, but apparently I'm quite obviously autistic.
00:20:01
Speaker
So yeah there was like this like well this isn't fair i'm thirty six like all these things i failed at university i failed at this i've got no career all these things i could have had and could have done it's been taken away from me because i wasn't born twenty years later when somebody would have noticed i was autistic at you know your age or at ten or whatever.
00:20:20
Speaker
So i went to a bit of a period of both grief and disbelief like grief of what i've said and disbelief of like maybe they were wrong maybe i'm just really good at i'm quite convincing maybe just convinced them i'm autistic somehow by being really like convincing or like i think it's weird isn't it when you get a diagnosis that isn't based on like a blood test or whatever and it's like someone's opinion based on things that they see.
00:20:45
Speaker
it's it's it's a really weird thing autism and how it's because it's it's basically
00:20:52
Speaker
It's all about behavior, isn't it? So it's like, you know, it really stands out to me as a misconception that people have about like, oh, I'm a little bit autistic because I have some behaviors that are related to an autism diagnosis. And, you know, quite often it's
00:21:15
Speaker
You know, this diagnostic procedure is meant to only pick up on signs that you may be autistic, not give you autism. Where do you get diagnosed? It's a really complex idea to kind of wrap your head around, I think.
00:21:36
Speaker
Yeah, it really is. So like wrapping my head around that and also believing that I would say took a good three or four years. It was quite a process. During this time, I'm like speaking at NAS conferences and putting that stuff on the internet.
00:21:49
Speaker
So yeah, but it has, in the long term, it's been the start of a process which has enabled me to feel better about who I am. It's enabled me to obviously develop a career that I'm proud of. I think it's enabled me to be a better mother to my autistic children because I have that understanding of who I am and therefore the experiences they're likely to have, I guess. And I think
00:22:14
Speaker
Yeah, it's not an excuse for bad behavior. I would never say that, but I think it's kind of helped me to understand why I've made some of the mistakes that I've made and how I need my life to look and how I need what needs I have in order to bring out my strengths and be the best and the happiest that I can be.
00:22:32
Speaker
So it's a bunch of, like there's a lot of sort of steps after you get a diagnosis, like diagnosis is just confirmation that you're autistic and like there's lots of different things that you have to work on this. You know, like I said before about sort of only really getting into what autism was past the sensory social issues in my twenties, it definitely took me probably about
00:23:02
Speaker
I mean, to be honest, I still feel like I'm still learning about it and learning about myself, but it did take me a long time. There was a lot of barriers, like mental barriers that I had to kind of overcome in order to kind of conceptualize what autism meant to me and how it influenced the different perceptions that I have of other people, all of that kind of stuff.
00:23:30
Speaker
But processing trauma was like a massive part, you know?
00:23:34
Speaker
Yeah, I think that's a really big one. And it's one that I've become really interested in lately, actually, is the fact that so many autistic people are also traumatized people and what that means for us in terms of how we cope with relationships and how we feel about ourselves. And so, yeah, trauma has been the last six months, trauma has been my obsession. If you look at my content in the last six months, probably say trauma more times than I did in the entire six years prior to that.
00:24:01
Speaker
Because I'm realizing things like when I feel deeply rejected by someone doing something relatively minor, I'm actually feeling deeply rejected by all the rejection that I've experienced in my lifetime and that that's just triggering that feeling. I am fine with that. Yeah, it's a really useful thing. And then there's even the small stuff since
00:24:22
Speaker
since getting my diagnosis. Before I was diagnosed, I dressed how the other moms around me dressed because I felt like that's what I was supposed to do. And when I was diagnosed, I wore what I wanted to wear, did what I wanted to do, stopped defining myself by trying to be someone else, essentially. So I stopped doing things like going out for coffee. Because I don't want to sit in a cafe and chat to someone.
00:24:48
Speaker
they're usually like really noisy as well aren't they with the the coffee grinders and stuff and yeah you know I'd much rather meet someone for a board game or yes I definitely agree with you most coffee shops I don't go to but there's this one coffee shop psycho under there
00:25:07
Speaker
It's Cafe Nero, but it's got two floors to it, and one is the base floor where most people go and chat to each other, and it's always the noisiest. But then upstairs, you have this whole open rustic appeal place with loads of really comfy sofas and a window that you can people watch through.
00:25:32
Speaker
It's a lovely place for me to go to. I like to go there when I'm writing and stuff.
00:25:40
Speaker
Yeah, quite like a cafe on my own. I think one of the big realizations for me was like, so I think one of the things that I did to cope with being an undiagnosed autistic was become a performer. Like if nobody will like me generally, at least when I'm on stage, people will clap. You know, it sounds really pathetic when I say it like that, but I guess it was that like need for acceptance, right? It's really, really open of you to say that because it's, you know, it's not an easy thing to say that you, you know, you find that you pick up on
00:26:10
Speaker
small changes and you're hyper focusing on people's body language and facial expressions and differences. Something's different in your mood and I can sense it and I need to know what it is. Please tell me.
00:26:24
Speaker
So yeah, so at that time, and up until kind of up until the pandemic, probably I was always surrounded by people, I always had lots of friends, I always had lots of people over to lots of socializing, I've come to realise I don't really like it that much. I quite like being on my own. And that's actually okay, because
00:26:41
Speaker
Honestly, I think my story is one of what is it to mask nearly 24 seven for nearly 40 years? And what impact does that have on your mental health and your wellbeing? And I can tell you it's very negative. And what I'm having to do right now is pull back from that and find spaces where I can be on my own because that's when I'm most likely to unmask because I find it really, really hard to unmask in order to heal my body and my mind as a result of all that extra adrenaline and all that extra trauma that I've been dealing with over those years.
00:27:12
Speaker
Well, thank you for sharing them. Sorry, that got heavy quick. No, no. We're all about heavy over here. Like, oh, that's good. I'm your girl. I mean, not your girl. Heaviness is, um, it's, it's, it's an integral part of the podcast. So don't worry about it.
Pandemic Reflections and Self-Discovery
00:27:31
Speaker
So the second question that I have for you is for some people, you know, getting diagnosed is a massive step of courage. You know, you've got all that stigma around the label and you've got this identity that you've built up over the years and, you know, autism comes along and you
00:27:51
Speaker
It kind of puts that into question and it's quite a scary thing. And it seems that, to me, there are some shared steps that autistic people take, like we talked about with the processing trauma. So in your autism journey, do you have times or situations that really stood out as being transformative for your life?
00:28:18
Speaker
Yeah, I would say so. I would say the first one was like when I first got the diagnosis and I think the biggest change at that point was the decision to find out who I really was. So I didn't know who I was. I wasn't necessarily unmasked or in any way healed but it was the point at which I went, I'm throwing out everything that I've been doing in order to fit in out of the window and I'm going to figure out what I want my life to look like. And that was a point at which I kind of actually
00:28:46
Speaker
got a lot of new friends around that time because I was talking openly about autism, people who had got children that were autistic or whatever in my social world, but that weren't necessarily close to me were coming to me and becoming a part of my world in a way that meant it was about my autism, which was what I needed at that time, I think, to feel safe.
00:29:06
Speaker
So that was really useful. And then I would say the next kind of big step I would say was the pandemic and the subsequent lockdown. I think that was really, really massive for me. I think before that, I was looking at autism in a more like step-by-step way. So I'm autistic, so that must mean that I need to wear rear defenders and I probably ought to be into comic books, right? I was almost like trying to mask an autistic person.
00:29:34
Speaker
What do I do to fit in here then? I think especially because at that time, particularly, and I'm going to be really honest, there were a lot of content creators around and I never felt part of that world because I wasn't young and I wasn't male. I was trying to put that on. How do I be Sheldon? Is that what I'm doing now? Then the pandemic happened and I reached out to my community really as my way of coping and said, by which I mean,
00:30:03
Speaker
primarily my youtube subscriber base which was like quite a relatively low number i think i've got like five or six thousand subscribers at that point and i kind of went i'm gonna do a weekly live stream and i'm just gonna be here that's how many subscribers i have oh gosh i'm so sorry
00:30:21
Speaker
I just thought... I know what you mean. I was just making a joke for humour's sake. But you're like an Olympian, so you never have to feel bad about yourself, right? Like, if I'd got an Olympic medal, I'd just be like, I'd be holding it right now if I were you and like rub it. You got a medal, right? It's not an Olympic medal, it's Commonwealth. I mean, that's still pretty amazing. Do you want to see it? So, yeah, I want to see your medal. I'm going to grab it. There you go.
00:30:51
Speaker
Wow. Is it gold? Did you get gold? I did. I did get a gold. Wow. That's amazing. Well done. Thank you. That's really impressive. Way more impressive than a bunch of YouTube subscribers, for sure. Anyway, have I dug myself out of that hole? Yeah, I think you've sufficiently dug yourself out of it. So, yeah. So I started doing these weekly live streams and I spent, and at the same time, I guess like everyone else was spending a lot of time on my own without having to like,
00:31:20
Speaker
dress up for the world, if you know what I mean. And that was a really transformative time for me because I was given a chance to sit with myself, I guess, in a way that you're not in the regular world because you're busy with work and children and life. I was given a chance to really, really think about
00:31:40
Speaker
who I am. And then I think being given this like responsibility of this community of people that came around me because of doing these live streams, and they were all listening to me. So I was like, well, you know, I probably ought to be saying and doing sensible things if I'm inspiring other people. And that really gave me like, partly gave me a confidence like, Oh, gosh, I'm actually useful, you know, something about me is useful, people are appreciating me. And it gave me the chance to really like
00:32:06
Speaker
come out is the word that I would use, even though it's not about sexuality or gender, but come out as like, I don't need to perform anymore. I don't need like, I'm enough as I am kind of thing. So that that I'd say that period of lockdown, particularly the first lockdown, but you know, the period since then, was the point at which I have become more holistic and
00:32:32
Speaker
whatever in my approach to autism, less like here's a bunch of facts about autism that I wanna tell you are more like here's how it actually feels and here's what it actually means that we all carry. I don't know whether that's
Therapy and Personal Growth
00:32:45
Speaker
making sense. No, no, I get what you mean. It's like a shift from fact-based content to having more of the experiential aspects to it.
00:32:58
Speaker
Yeah. And then taking that and running with it in like, what can I do for my community and for myself? And then I also did some therapy. I'm seeing a therapist now. And for the first time I'm seeing a therapist who specialises in working with autistic people.
00:33:14
Speaker
And people with ADHD. I need one of those. So that's been really helpful. I need one of those. It's been very helpful. That's been really, really helpful. So I think I am optimistic. I hope that in five years' time I'm going to look back on this period and say, this is the period of time in which I healed myself. So it's like a new adolescence, isn't it? Finding your place in the world and your identity.
00:33:40
Speaker
I do think that you're right in saying coming out about it because it's coming out with your... You're coming out as you rather than a mask. And also not looking for external... I think if you're on social media making content, whether you want to admit to it or not, to some extent you're looking for external validation, aren't you?
00:34:04
Speaker
Like, right? And I certainly definitely was in the early days. And I think in the last year, I've reached the point where I'm genuinely not. I am genuinely not. When I put out content, I'm not like, how's this going to be received? I'm like, what do I actually have to say that is of value and how do I want to do it and screw however many views it gets or whatever. And that feels like a really healthy place to be in. Sure.
00:34:27
Speaker
No, I completely agree with you with that. It's easy because it's such a personal thing and autism is very different person to person. It can sometimes feel like, am I am I telling people about
00:34:47
Speaker
what autism is or am i telling people about me or you know telling me about my experience of being autistic or so i often have that sort of mental barrier in my head that i'm like should i really be talking about this is this something that that everyone experiences or am i just you know just talking about me it's um
00:35:09
Speaker
I feel like I want to get to the point, do you ever feel like this? I feel like I almost don't want to put autism as a label in the conversation. I feel like I almost just want to be going, this is what I'm experiencing. Anyone else? I get that. So one of the things that is a very big topic and has been for a while is unmasking. How do you unmask? What is the process of unmasking?
00:35:40
Speaker
Yeah. I mean, that's another huge question, isn't it? Because I think my answer would have been different on every year that you asked me. But this year, the answer is for me personally, learning to stim has been a big part of unmasking because as a child, I definitely stimmed. I remember stimming. I remember walking around supermarkets doing stuff with my arms above being like,
00:36:00
Speaker
Stop it! At like the age of like 13, we're not talking small child, you know? And I definitely learned not to stim. And then what's been beautiful, and I think we're unfortunate in having autistic children who I have never ever encouraged to mask or not stim, is watching them stim and see how that benefits them. And then I started to stim with particularly my youngest child because she doesn't go to school. So we spend a lot of time together.
00:36:26
Speaker
And yeah, she has some really cute stims that are quite reminiscent of the ones I had when I was little.
00:36:33
Speaker
That's such a beautiful thing, stimming with your autistic child. There's actually a TikTok video of us stimming, it might even be on Instagram of us stimming together and I do love it. I watch it, it makes me smile every time I watch it because she doesn't look like I've gone, oh stim for camera, she just looks like she's in heaven and I've managed to capture it and that's beautiful. So learning to stim and I think the first time I realised I was in a difficult situation in the world, something had happened,
00:36:59
Speaker
And I was stimming and I hadn't noticed I was doing it, you know, and I was like, Oh, okay, that's good. I obviously reclaimed that brilliant. That's been a big part of it because I think stimming is such an important part of how we regulate that when you're not stimming in public, that's a big part of that mask, isn't it? Um, and then I think the next part of it for me has been turning off the entertainer, like, because I am an, I'm a born entertainer. I do love it, but like, I don't.
00:37:26
Speaker
It's not normal to be entertaining while sitting around the dinner table or making breakfast or in regular life. I think I'd reached the point where, because I've always been like that, because that's part of my mask, I felt like people expected that from me because it was what people liked about me that I'm funny, that I'm entertaining. If I don't do that, will people still like me?
00:37:47
Speaker
So I'm really like in the very, very early stages of trying to do that. And I can really only do it around my family and my very, very closest friends. Like just losing the face and, you know, like all of this, it's an act. It's all an act. Underneath that I'm quite dull, really. And then I wouldn't say that. I mean, I would not say that. It's it's just it's an exaggeration of your personality and it's just what you have to do when you when you're on the internet.
00:38:14
Speaker
And then the other thing I would say that I've done that's been really important I think would be useful for other people is I have made like I've journaled and I've made art around
00:38:26
Speaker
How do I see myself physically? How do I perceive myself? What do I genuinely love as opposed to what have I been saying that I love because I felt like I was supposed to love it? Even stupid stuff like I absolutely do love Doctor Who with all of my heart and all of my soul. There's no lie there. So really figuring out what are those things that make up my life, that make me happy, that are who I am.
00:38:47
Speaker
And then finally working out what my values are. Because I think when we mask, it's not just the mask of how do we actually present ourselves in the world. It's also the mask of what do we say we believe, politically, what do we say we love in order to feel like we're fitting in with everybody else, you know? And so kind of like, I actually made a value statement. What are my values? What is important to me? Who do I want to be in the world? And so that's what I've been doing. And it's really, really been very helpful. I would definitely recommend it.
00:39:16
Speaker
That is a really great point. Honestly, I got really excited when you were talking about values and meaning because it's something that I've looked into a lot, especially around coping with mental health and things like that.
00:39:37
Speaker
I do think you're right. I think that, you know, we actively try and, you know, when we're in that state of trying to fit in and be a part of the world and be successful and we do take on board other people.
00:39:54
Speaker
you know, people that we see in like, Oh, I want to be like this person, you know, what, what do they value and what do they, you know, and it's, it's sometimes really, really positive to kind of sit down and go, what do I actually value? Like, what brings me meaning in my life and joy and
00:40:13
Speaker
things I would actually highly recommend I'm just thinking as you're saying that I'm thinking you know how like we're living in like extremely woke times and cancel culture and all that you know how like neurotypical people are all like oh my god it feels like you can't speak freely anymore are they like experiencing autistic masking maybe maybe they've got to be a certain way or they're going to get cancelled because that is exactly how we felt right yeah
00:40:37
Speaker
Oh, I'm going to make a video about that. That's the whole topic there, isn't it? That's a juicy topic. Yeah. Yeah. So I'd also really recommend I've been doing a stoic journal. I don't know whether you know about stoicism. Yeah. So I've been doing like a daily stoic journal since the start of the year. And that's a lot about that as well, figuring out what your values are, what's important to you. And I found that really helpful.
00:41:00
Speaker
One of the other things that I was interested in, so we talked about unmasking and processing trauma and stuff. Did you at all in your journey go through a stage of denial or aversion to go in and get a diagnosis?
00:41:20
Speaker
No, I didn't know because I think, because I'd already processed, maybe because my child was diagnosed ahead of me, you know, only months ahead of me, only about four or five months ahead of me. But because I maybe went through that with them, whether I'd already done that, like, by proxy, if you like. Like, should I be doing this? Should I be labeling them? Should I, what does this mean? I think because I'd like firmly concluded in my mind that all that we were talking about was a descriptor. Yeah.
00:41:47
Speaker
you know, that it was, that it was okay. But my child, they went through, my eldest went through, I don't think I'm autistic, actually, draw a face, which is fun. Well, it's a weird thing, autism and teenagers, because you don't want to hear anything that your parents are talking about to do with you and who you are, because you're kind of in that stage where you're trying to break off and like, trying to assert some some level of independence and, you know,
00:42:15
Speaker
I definitely, I'm not ashamed to say that I definitely did that when I was younger around mental health. I think I would say my middle child is doing that. My middle child is 13 and they're definitely doing what you're describing. My eldest, I don't think it's been like that, but that's perhaps because she's trans and because she's autistic and because I've been the main support in that. We are really, really close and I don't feel like there is that resistance. So maybe that's one of the silver linings to her challenge, her life struggles. Cool.
00:42:45
Speaker
So, I mean, not cool about the life struggle. I know what you meant. Sorry, I won't cancel you. If you don't cancel me, I won't cancel you. So what I want to ask you next is what are some common misconceptions or comments you've received about your late diagnosis by people either in your life or online?
Navigating Online Criticism
00:43:11
Speaker
I think I would say I think I've been from what I've heard from other people, I think I've been quite fortunate in that most of the people in my actual life either embrace the fact that I am autistic and what that means for our relationship moving forward or at least pretended to do so. So I didn't receive any like negative feedback or any
00:43:31
Speaker
judgment from the people in my real life, in my non-online life. And even online, compared to what I know some people have gone through, on the whole, I don't deal with too much.
00:43:43
Speaker
discourse, but of course, of course, I get the comments that I'm not really autistic and that I'm high functioning and that I'm somehow just doing this for money. I'd really like to know where the money for being autistic comes from. Have you had it yet? Did you get some of the payment? That I'm doing it for money, that I'm taking resources that other people shouldn't take.
00:44:07
Speaker
you know, yeah, like a little bit, but it's been quite minimal. I feel like I've been quite fortunate and I've always had this approach as well, yeah, of just deleting it. So I just, I sort of decided quite early on in my YouTube career that I was not going to let these idiots get to me or impact how I felt. And that the second comment was negative or bullying, not negative, like someone can disagree with me.
00:44:34
Speaker
in a respectful way. As soon as it crossed the line into being disrespectful or bullying or unacceptable behavior, I would just delete it straight away. So now I've become quite good at just, and it almost satisfies me. Like I got a comment recently that was like three full paragraphs on why I'm not autistic.
00:44:50
Speaker
three, four paragraphs, a good 600 words, yeah, on why I'm not really autistic. And when I deleted it, it was like almost joyful. Like, Oh my God, you must have spent so long writing this mean comment, it's gonna really annoy you. It's just gone. You know, but I just don't I think like, I've kind of decided that other people's opinions are none of my business of me, and none of my business and I can't be concerned with them. So I really just genuinely don't
00:45:18
Speaker
give it a huge amount of thought. You know, I recently had some massive backlash and a lot of really negative comments about my gender identity. And I know we're not here to talk about that today, but it was very, very harsh. And people said some very, very unkind things about me, including that I am not fit to be a mother, which is the kind of one of the biggest insults you can give to a parent. Yeah, just make any sense.
00:45:40
Speaker
Because I'm non-binary and because I talk about it on the internet, I'm essentially grooming teenagers, apparently. Yeah, I know. And that was hard, but it taught me a really important lesson in that
00:45:54
Speaker
No matter what I do, no matter what I say, there are going to be people in the world who don't like me or don't believe my experience for whatever reason they have for doing so. And if I give them any power or any space in my head, then they're winning and I won't let them win so I won't let them in.
00:46:12
Speaker
Very well said. I've definitely had my fair share of negative comments in the past. Really? As you can probably tell from my name, I tend to get a lot of eugenics, eugenicist and an artsy and things like that. I'm not making the link. Why would your name? That's because I use Asperger's Grove.
00:46:41
Speaker
Oh, the Aspie thing. Yeah, but, but, but, and I would ask you, I've got two questions for you. I know it's your podcast, but I'm hosting just for a minute. Firstly, would you be using that name if you were to name it now? I'm not saying you shouldn't. I'm not, like, I don't have an agenda. I'm just curious.
00:47:00
Speaker
I think it definitely served me well, you know, to have that name. I think the only issue that I have with my name is that I don't like it. I don't like how it sounds. It just doesn't seem like a very punchy kind of title.
Language, Identity, and Public Perception
00:47:19
Speaker
You know, I can't just say to someone like if I'm doing some networking, like,
00:47:25
Speaker
Asperger's growth and they'll be like, Oh, how do I spell that? And like, yeah, yeah, I get that. I mean, my name doesn't even connect me to autism. So I'm not sure I did, did a great job of naming things. Sure. Um, and would you say that actually have three questions as it turns out, would you say that your diet, were you diagnosed with Asperger's? I was still on my, still on my records. It hasn't been changed. So
00:47:50
Speaker
Personally, although I don't tend to use the word Asperger's because of its links to Hans Asperger, I would always caveat that with, if that is what you were diagnosed with and identified as, as a very young child, right? And that feels like a part of your identity. I would never, I would never say you shouldn't use that word because it is connected with him, but it is also something that's connected with you now because you've carried it for so long, right? So that makes sense to me.
00:48:20
Speaker
You know, we can always debate language. And I've made many posts in the past, which is along the lines of, like, it's OK to have an opinion on using it. But if someone goes out and says, like, everyone should use Asperger's, you should just use it. Like, why are you not using it? Then I would have an issue with that, I think.
00:48:50
Speaker
if it was just me saying, this is why I use Asperger's. And someone else was like, oh, this is why I call myself autistic. And I wouldn't have any issues with that, because that's just a personal preference.
00:49:09
Speaker
I think the problem is is that it's celebrating so like an interesting parallel I guess would be I don't know whether you know but I'm in Bristol where the Colston statue got taken down during Black Lives Matter March. Did you hear about that? So Colston was a slave trader who built a lot of Bristol.
00:49:24
Speaker
And during the Black Lives Matter march, they took down a prominent statue of him in the center of the city and they stuck it in the river. And we all cheered and I cheered and I fully stand by that. And in the time since then, a lot of things that were named after Colston, like Colston Hall and Colston Girl School have been renamed. Because essentially in using that name, what we were doing was celebrating a slave trader and giving his name an integral part of our
00:49:48
Speaker
city. And so I suppose there are some parallels between that and the word Asperger's in that I don't actually know a huge amount about it, but my understanding is that Hans Asperger was a Nazi sympathizer. But that is just my understanding of the situation. So I suppose that when we use Asperger's as a term that gets used widely, we are like keeping alive the name of someone who potentially wasn't a good person.
00:50:14
Speaker
I guess that's why people might have an issue with it. I completely get that. That said, if I'd named my channel in 2016 something, I might have included the word Asperger's because at that time I didn't know that. And I might feel that it's difficult for me to rebrand something that I've been known as for a really long time, although Ask the Princess Chloe Haden did recently do just that, which I thought was quite interesting. It's funny that you say that because I am wanting to rebrand.
00:50:43
Speaker
at the moment. Firstly, because I don't like Asperger's growth, the name, I just, it doesn't roll off the tongue for me. And another one is I don't want it to stop people from reading my stuff or listening to me or, you know, and if, if I can, it's, it's, I can deal with like the, the hate from it and I can deal with the method, the painful messages and things of that nature.
00:51:11
Speaker
But why do people have to deal with it like that? Why can't they just be like, I don't love your name, but great content? Yeah, exactly. And I would be fine with that. It's it's just it's it's it's immediately they put me into a box because they're like, oh, here's a male. He he looks like he goes to the gym. He must be a straight straight white cis cis male and
00:51:35
Speaker
all of that and then I immediately got all of these different labels that for quite frankly most of them don't but other than cis male and white like they don't apply to me but I just get put in there in the box um because I don't yeah that must be really hard I don't sort of uh lend myself to the the popular idea that I should not use Asperger's but it's
00:52:01
Speaker
I think that's the problem though. I think we do really live in mob mentality at the moment, don't we? I don't know about you, but I'm terrified of saying the wrong thing on the internet these days in a way that I wasn't when we first started. You've been around for a while as well, haven't you?
00:52:17
Speaker
I haven't yet said the wrong thing on the internet to my knowledge but I am someone who just says what I think so it could very easily happen and it like doesn't give anybody any room for growth or learning because it's like if I'm scared to say anything if I'm silenced by the fear of saying the wrong thing or if I'm silenced by having conversations in which I would learn how do I learn how do I grow I find it really worrying it's like pick a side and hunker down isn't it at the moment and I don't love that
00:52:45
Speaker
No. I'm very firmly on no side. Yeah, me too. Switzerland! I keep a little bit of an eye on how things may be perceived, but
00:53:01
Speaker
like I it just it inhibits my ability to create content because I'm like oh I didn't say this so then I start question myself and then after a while like I've been silent for like five seconds and I'm you know how do I speak about this I think that's a really good book by Brené Brown have you come across Brené Brown? Brené Brown
00:53:22
Speaker
She's awesome. So she speaks about what does she speak about? I mean, just like personal development stuff, really. And she's written this book called Into the Wilderness, Braving the Wilderness, Braving the Wilderness that I read at some point during the pandemic. And it talks about this, like being vulnerable and holding your truth, even in a world where you can get cancelled for it. And one of the things that really struck me in that book was she was talking about, look, you might be a left wing, you know,
00:53:46
Speaker
You might be left wing, you might be like really opposed to voting conservative. You might have a neighbour who is like a massive Tory supporter. But also this neighbour, when you were unwell, brought you food. And when you needed a lift somewhere, gave you that lift. And if we stop having... So yes, I wouldn't personally use Asperger's in my work these days.
00:54:06
Speaker
But I'm not going to let that stop me from potentially building a relationship with like you who I've only just met in terms of like networking and knowing someone because you use that in your name because it is one facet of who you are. And we are never going to find what do we want to do live in a world where everyone is exactly like us with exactly the same opinions. That sounds really dull to me. I love that.
00:54:28
Speaker
Thank you for the questions. I actually really enjoy taking questions. It's the main thing that I do outside the podcast, going over people's stuff.
Advice for Seeking Autism Diagnosis
00:54:42
Speaker
So I've got one more question, and then we'll do a couple of interview questions from Instagram. Ask Burgess Grove, anybody who's listening, if you want to ask a question.
00:54:55
Speaker
What advice would you give to people who are considering a diagnosis but are hesitant to commit for various reasons?
00:55:04
Speaker
I would say in reality, I would always want to caveat anything that I say around this that we don't live in a world where the diagnostic procedure is really perfect. We don't live in a world where the referral process is perfect. And there are people going for assessment who are autistic, but are not receiving that diagnosis because of gender biases or race biases. You know, that's, that's a fact. And I think we need to say that if we ever speak about access and diagnosis, but if you want to go for it anyway and give it a try, keep that in mind. Don't let the experience invalidate your experience.
00:55:35
Speaker
I would say my first piece of advice would be like practical stuff, like make a list of the reasons you think you might be autistic to take with you to the GP so that you have that to reference or even give to them if you find yourself a little bit tongue tied. Don't take no for an answer. They might say you don't need an assessment, you're fine, you've got a job, whatever. Don't take no for an answer. You have a right to be referred for an autism assessment
00:55:59
Speaker
use that right kind of like I would say throughout that diagnostic process learning to be your own best advocate and not feeling bad about that is really important learning to guard your boundaries and know what you have a right to so that you can confidently say I did everything that I could to support myself to access this assessment.
00:56:18
Speaker
And outside of that, I would say give yourself time to process what you're experiencing and what you're learning about yourself and look after yourself like you would your very best friend because this is heavy stuff. It's life changing stuff and you're going to need to eat a lot of cake and watch a lot of your favorite TV show in order to kind of like regulate and cope with that experience.
00:56:40
Speaker
Brilliant, thank you, Ella. I think in my minds, when someone would say that they're hesitant to go for a diagnosis, I think about my dad and I think about people in my life who are quite obviously autistic.
00:57:01
Speaker
I know it's a thing to say that I'm pretty sure that someone's autistic without having diagnosed them or anything like that.
00:57:13
Speaker
It's just very apparent sometimes. And I was talking to this man called Peter Bainbridge as part of my documentary Asperges in Society. And he mediates between autistic people and the law or housing accommodation, things of that nature.
00:57:36
Speaker
or within families. The thing that he said is that most autistic people will go through their life trying to ignore that part of them up until the point where they need to pay attention to it. Sometimes that's at the point where they've experienced a really negative bad life experience or trauma. For me, a part of that was
00:58:06
Speaker
um being lonely at university and not knowing how to to make friends and and recently broken up with my long-term partner you know i was quite in a place of quite heavy isolation and that's that's what
00:58:21
Speaker
encouraged me to start my YouTube channel and try and learn more about autism and try and verbally process it myself. Do you think there's any way to get around that for people? Do you think that we could change something about society or about the processes or the way that people view autism that would make it easier for people to
00:58:46
Speaker
not feel such an aversion to getting diagnosed, but there's a very long question. Yeah, I'm just processing it. I'm just not masking and giving myself time to process it, rather than just blurting out whatever comes into my head first.
00:59:01
Speaker
Yeah, I would say that one of the things I think that's really helpful is the more high profile people that get diagnosed with autism talk about it. I'm talking about people like Anthony Hopkins. I love the fact that Anthony Hopkins was in his 70s when he was diagnosed. Because of the age that I am, I get a lot of audience in their 50s and their 60s even, and many of them are saying, is it too late? Is it too late to do this? Do I need to do this?
00:59:30
Speaker
oh hang on i just need to let my dog in okay sorry are we gonna be able to see coco come on stinks come on oh come on you silly girl here she is hello hi coco um is she's cute right yeah she's a girl yeah she's beautiful um
00:59:52
Speaker
So like, I always sort of cite, it's great to have people like, people in the public eye are really useful when I'm reassuring people about getting diagnosis, because I could say, well, look, Anthony Hopkins obviously felt it was worth doing in his 70s. So you know, that means that it's, it's worth doing for anyone. And I think
01:00:08
Speaker
like just changing the stereotypes around autism generally like this idea that we're all cold and unfeeling and difficult to be around and that all autistic people are the same and that we're all really massy like just dispelling as many of those like myths and stereotypes until we reach a point where it's recognized that autistic people and you know people with all the like common comorbidities like ADHD and dyslexia and dyspraxia are essentially just
01:00:36
Speaker
human beings with brains that work differently, but that that looks different on every single personality. And if we just if we reach the point of starting to just see that as like in a more normal
01:00:49
Speaker
just a part of our world, a part of our culture, then it won't be so scary to identify as that. And people will be less scared to go and access the diagnosis. But I think, honestly, the main reason people are scared to go forward for diagnosis at this point is the fact that they know they'll be waiting a really long time and they'll likely be told that they're not autistic.
01:01:09
Speaker
So I think diagnostic services need to improve and in that I think that we're doing it completely wrong anyway. This is just my non-professional opinion. But why are we diagnosing autism at this clinic and ADHD over here and dyslexia over there? Do you have any comorbidities? There aren't that many autism people who don't have an add-on.
01:01:30
Speaker
I've got dyslexia and ADHD, so I really feel like it would be more useful at this point to be going, right, what is your neurodivergent profile? What are your strengths? What support needs do you have that enable you to really reach those strengths and be the happiest that you can be, and just to be getting information about that in one place rather than trying to almost put us in these separate boxes? Does that make any sense?
01:01:58
Speaker
It's been a long time and probably costing more money than if we did it all in one place and looked at it more holistically, right? No, I completely understand that.
Representation of Autism in Media
01:02:09
Speaker
I think it's really worth considering the sort of stigma around being autistic. It's not only that
01:02:18
Speaker
a lot of people think it's a negative thing, just completely negative thing. It's also that I just don't think there's enough representation of the whole spectrum, like a lot of different autistic people's voices. It just seems to be a very
01:02:41
Speaker
So it seems to be in the media that any stories around autism are always about trying things despite your condition or despite being autistic, rather than- Or like being some kind of a genius, like the good doctor, right? Where you've got a mind palace.
01:03:01
Speaker
But don't you think that's true of representation generally? Yeah. So I've been watching Heartstopper. Have you watched Heartstopper? The big Netflix? No, I'm way too old to be watching Heartstopper. I watched it with my kids and it's basically a great show with LGBTQ plus representation. Brilliant, brilliant. Lovely.
01:03:15
Speaker
But what I'd like to see moving forward with all minority groups and representation in media is for their minority statuses to just be not the entire focus or not to be like, this is a show about an autistic gay person who's really focused on their gayness and their autism.
01:03:33
Speaker
They've got no other personality. That's their whole personality, you know? Indeed. Like if we were just incidentally in shows, you know, with a disclosed diagnosis, I think that is a useful thing because otherwise we get the Sheldon situation where it's like, well, we can make a whole show where we mock an autistic person because we never actually said he was autistic, you know?
01:03:51
Speaker
but like if we can have like out autistic characters in shows but that it's not the show about the autistic person and they're just like so if we're one in what's the stats one in 10 one in what how many others are there have you do you know i think it's uh increased to like one in 50 or some something like that so if we're like one in 50 right in every show where there's 50 characters one of them should be autistic
01:04:15
Speaker
I do agree with you. It's just always the highlight. It's always the reason why the mainstream media takes on board a story. It's like, oh, they're disabled, they're autistic or something. And so we'll get them on and it'll make their achievements seem even more better because they've got that awe factor.
01:04:38
Speaker
Yeah, like the disability hero, the disability porn kind of thing that I can't remember. I always like to cite the lady. The inspiration porn. Do you know what the lady was that talked about that? Because I never like to talk about something without crediting the person. Maybe you could put it in the show notes. Go for it. I've got a growing list of tabs on my computer.
01:04:56
Speaker
But basically her whole thing, Stella Young, I'm going to say Stella Young, but I could be wrong. And she talked about how it's much more comfortable to be around disabled people if they are inspirational. So it's like, oh my God, you got dressed. How did you do that?
01:05:13
Speaker
It's so amazing. And it's like, we don't want to be your inspiration. We don't want to have magical gifts. We don't want to have superpowers. We're just people who have brains that work a little bit differently to the majority. And I think when we get rid of that narrative, that will be really useful as well. Like that, like you're so amazing because you aren't curled up in a ball crying about your terrible brain, you know?
01:05:39
Speaker
The listeners cannot see, but I am scrunching my face like that. Well, that's the end of the main sort of body of questions.
Q&A: Diagnosis and Relationships
01:05:51
Speaker
We've got a couple from Instagram. How did you get Instagram questions? Did you ask them? Yes, yeah, yeah. You ask them like a story. I did it early in the week. And people did actually want to ask me things? They do.
01:06:06
Speaker
Not that I'm looking for external validation because I'm totally not. No, I'm sure many people would love to ask you any number of questions because you do some amazing work online. Thank you.
01:06:23
Speaker
So we've got the first one is what to do about the cost of getting a diagnosis and the wait times. What can I do in the meantime of waiting? What to do in the meantime while you're waiting. I would say that it is totally okay to treat yourself as if you are autistic while you are waiting to access an assessment, whatever the barriers that might be.
01:06:46
Speaker
and to learn from your own experience, from advocates, from wherever you want to learn about autism, about things that might support you as an autistic person and to implement them and to see if they improve your life because they're certainly not going to make your life worse and
01:07:05
Speaker
even if at the end of the day you weren't diagnosed with autism for whatever reason, if the strategies and the things you're doing to support yourself are helping, they would still be valid. So it's still a useful thing to do. And I would also use that time to learn about myself and to learn about autism and
01:07:23
Speaker
I guess what I'm trying to say is that you don't need a doctor to take a box to say you're allowed to look after yourself better now and that you're allowed to love yourself and that you're allowed to feel valid presenting to the world in the way that you feel that you do. I don't think there's anything that I can add on to that one. You've pretty much said it all I think. So I've got the second one here which is how do I get my partner to get a diagnosis?
01:07:51
Speaker
Oh, I mean, do they want to access an assessment? I guess that's asking how do I persuade another person to want to
01:08:02
Speaker
find out something about themselves that I think is true, but maybe they don't. Yeah, I get a lot of messages because I make a lot of stuff around relationships and dating and things. And yeah, I've had this question from neurotypical people asking about, you know, their partner, like getting their diagnosis and, you know, being some negative things to not knowing how they function and stuff like that. But
01:08:27
Speaker
Yeah, well, interestingly, I've got a little aside for you in that my husband, when I was first diagnosed, went to a group for parents, parents, partners of autistic people, a support group. And he only went twice because he was like, I don't want to go and sit in a room and moan about you. That seemed to be the main kind of motivation for the group. And he was just like, I don't really feel like that. It's true. I've seen the Facebook groups.
01:08:49
Speaker
that I've infiltrated the partners of autistic people. Ooh, have you? What do they say about us? It's a lot of complaining, and it's a lot of talking about how they don't have any emotions.
01:09:06
Speaker
Oh, so can we set up a Partners Renewable People Facebook group and talk about how they are really loud and spontaneous and talk about things that are not interesting. So interestingly, I'm bringing out a video this evening, this very evening, so I guess
01:09:22
Speaker
at some point in the past when you're listening to this that I've made with my husband that we're talking about our marriage and it's the first time he's ever been on my channel so it's kind of a big deal I'm talking about our marriage and how that works and something that he said that I thought was really interesting when I said what are the challenges I asked him what are the challenges of being married to an autistic person he was like I mean I don't really think of them as challenges of being married to an autistic person I think of them as
01:09:46
Speaker
learning to live your life with another person and the challenges that come alongside that whoever that person is. Yeah. And I think that's really useful thing is that we're not all the same and everybody's got stuff. But going back to the question that's been asked, I would say you can't, you can't make somebody
01:10:03
Speaker
go and have an assessment for something that they don't want to do. You can encourage them by talking to them about the fact that you think that they might have autism. You can leave around literature that might be helpful. You can share resources, videos, podcasts with them that might kind of help them reach that realization. But ultimately, it's not okay to tell someone else how to define their brain. Definitely. There was this one instance where someone messaged me about
01:10:32
Speaker
It's always very difficult to offer people relationship and dating advice just from a message about the situation. I don't know what you're like with them. I don't know what the dynamic is or the events that have come up. Only you know that.
01:10:52
Speaker
um and there was this one instance where like their husband have had left them because they thought that they were toxic or something along those lines and they think that it's something to do with them being autistic and undiagnosed and not knowing how to regulate their emotions and things like it's such a complex question isn't it like
01:11:16
Speaker
Oh, it really is because I get similar questions. I've had people emailing me really intimate details about their girlfriends because they're looking at me and going, well, you're autistic and I've got an autistic girlfriend, so let me tell you about all their deep personal stuff and then you can tell me how to fix my relationship. And I'm like, firstly, not a therapist. Secondly, not really keen on unpaid labor. And thirdly, it's possible to be autistic and an asshole. That's a fact.
01:11:45
Speaker
It is true. By which I mean, if someone is treating you in abusive way, their autism is almost irrelevant. You should not be living with abuse. And if someone is treating you in an abusive way, but you believe it's because of their autism, like you said, it's led to them having these issues, which I carried some of that and I'm sure my husband dealt with some stuff that wasn't ideal because of that in the past. Likewise.
01:12:09
Speaker
but you still need to hold them accountable and you still need to have your personal boundaries of what you will and won't accept within a relationship regardless of someone's neurology, right? Yeah. You're not the carer. You're a partner. Yeah. It may be some aspects of, you know, helping with certain things, but for the most of it, it's a romantic relationship, you know, that your partner is important to treat it as that.
01:12:38
Speaker
I'm responsible for me. He's responsible for him. But where he's willing to support me with stuff that I struggle with, like he can calm me down when I've had a meltdown or, you know, he can help me if an unexpected change happens and I'm going, I don't know what to do now. And he can kind of go, yeah, here's the things that I would recommend. But like, if I would not want him to tolerate abusive behavior from me and say, Oh, it's okay. It's because she's autistic. I would want him to say this behavior was unacceptable and I cannot live with it and you need to work, you need to change that.
01:13:06
Speaker
Yeah, I completely agree with that. So that's that's our Instagram Q&A. Cool. Well, I want to ask you now, which is perhaps a very difficult question for most people, including myself. What do you want people to take away from the podcast?
01:13:29
Speaker
about. From this podcast. About late late diagnosis. We've talked about a lot of things. Specifically. What do you want? Let me think about this. I want people to take away compassion for themselves. You know, if you're someone who is
01:13:45
Speaker
lived with autism all your life without knowing that you are autistic. You are probably also someone who has self esteem issues and often feels like you aren't good enough and like who you are isn't acceptable. And so I would like you to take away from this podcast that if I as an entirely intense person who really felt like that for a really long time, I've reached a place where I can say I am enough as I am, then you can too. And that there's hope that that's a place that you can sit in in the future.
01:14:14
Speaker
Brilliant. Very well spoken. So yeah, as part of the season two, I have a couple of things. One is your song of choice. This segment is all about sharing a piece of music that means something to the topic or means something to you. And do you get to actually play it as well?
01:14:42
Speaker
I probably won't be able to get the licensing for that, but... Yeah, licensing. Go to your music provider of choice and listen to this song. My favourite song is sung by David Bowie, who is... To begin with, there's a massive hero of mine, because as a young, quirky teenager living in a very mainstream world, I looked to him and I saw someone who also was different, and I felt hope that there was a world that I could live in and be different. As cheesy as that sounds, it's true. And the song is Kooks, which is a song in which
01:15:13
Speaker
The kind of main lyric is, if you stay with us, you're going to be pretty kooky too, which is a song that makes me think about the fact that now, as a mother, just this idea of us as a family just in our kooky, crazy well-being who we are and it being okay, it just makes me feel happy when I listen to that song. That's beautiful.
01:15:35
Speaker
So we also have our profile of the day, which I have not done. What does that mean? What is a profile? Just highlighting people who have done something particularly good. Social media people or people in general? Social media people on Instagram. On Instagram, who do I think is...
01:16:00
Speaker
Well, I was going to do it, but you're very welcome. Oh, you do it. No, no, go for it, because I don't actually follow anyone, because I'm really antisocial. Sorry. It's okay. Misunderstood. I think today we're going to highlight one of our future guests, Autistic Callum.
01:16:19
Speaker
Callum is a really great guy. We're going to talk on the podcast soon about self advocacy, which I think is a good point. We were talking about earlier about, you know, advocating for yourself in a diagnosis situation and to doctors.
01:16:38
Speaker
It's all very important stuff. He also, you know, he talks a lot about sort of like unwritten rules in the workplace. He talks about a whole host of different things and he's a really great creator and he's well deserving of the following that he has. So yeah, that's our profile of the day.
01:16:55
Speaker
Oh, cool. Yeah, I've not come across Callum before. I'll check that out. That's really cool. It makes some really great posts. So this is coming to the end of the podcast. You can find the 40 Auti podcast on pretty much every single podcasting platform that you can help to find it. Apple, Google, Spotify, all on their 40 Auti podcast. You can also visit my website where I offer an array of different things, including
01:17:25
Speaker
doing anonymous interviews for Instagram, as well as modelling and public speaking. And of course, check out my Instagram and YouTube account which is Asperger's Growth for a lot of stuff around dating, mental health, autism, lots of different things.
01:17:46
Speaker
Yeah, also something that I have not done before. Please like and rate my podcast because I have like no ratings. And it's it's especially an Apple podcast. That would be really great if you can give me a five stars. I'm not going to say how many stars, but five is five is the best one for me. Yeah, it's just a nice comfortable number, you know, to yeah.
01:18:15
Speaker
Of course, thank you to all of my YouTube members and my Patreon supporters. Ella, it's been lovely to speak to you. I've been following you and stuff for a while and it's been great to kind of have a chat, find out what life is like for you and find out more about your diagnosis journey. Have you enjoyed being on the podcast?
01:18:41
Speaker
Yeah, I have really enjoyed it. I think I really like, maybe I should make a podcast. I really like podcasts. You're just kind of sitting around and having a chat, which is one of my favorite things to do. You definitely should. You do have talent for podcasting, definitely. I may all just appear on everybody else because I don't really have time. There's a lot of them. You said it before about Doctor Who. Do you know about Mason, Crohn's and Autism Advocate? Because he's doing a series on his podcast about Doctor Who.
01:19:10
Speaker
Oh, I think he should talk to me about that. So that's that's another link there. But anyway, I really hope you've all got something value from this podcast. I definitely have. And, you know, learning a bit more about what it's like to be diagnosed later in life, the challenges, the benefits, the ups and downs. And yeah, it's been really great to talk to you and I hope you have a lovely day.
01:19:39
Speaker
Thank you, goodbye. See you later, peeps.