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The Crushing Reality Of Late-Diagnosed Autism
1.5k Plays1 year ago
What barriers face late-diagnosed autistic individuals? Do autistic people really have support for employment? What options do autistic people have for finding friendship and love?
Pedro Ferreria is a late-diagnosed autistic adult with a passion for retro video games and a voice to share. He describes himself as ‘falling through the cracks’, facing challenges in friendship, independence, romance, and employment throughout his 40 years.
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They kick things off by speaking about Pedro’s recent 40th birthday, and the two bond over their unique difficulties with their birthdays.
Diagnosed dyslexic, undiagnosed dyspraxic, and recently diagnosed autistic at the age of 37, Pedro takes us through his early life experiences and his love for retro video games.
Pedro is yet to learn to drive or move out of home, struggling immensely with finding a stable and fulfilling job to fuel his independence. He had a job for a number of years but eventually became too taxing due to the 3-hour roundtrip involved.
He’s never felt competent in life, being shuttled down the volunteer routes, and palmed off by places of employment that claim to be Disability Confident. Thomas talks about the lack of post-18 support available to Autistic adults, and what unique challenges social life as an adult brings. Andy’s Man Club was transformative for Thomas’ close friend.
In the conversation about dating, Thomas speaks on matching-making services, going to groups, and dating apps. Pedro found no luck with these methods and is still seeking a partner.
Bullying has always been commonplace in his life, whether it’s constant negativity from family, school bullies, workplace bullies, and online harassment. Consequently, he’s developed low self-esteem and an anxiety disorder which makes life difficult. They speak on Pedro’s experience of online harassment following the Intellivision Amigo controversies, where he’s been stalked, had his tweets posted to Discord servers, and had his face photoshopped as a clown.
Pedro describes himself as an ‘old man shouting at the clouds’ and opens up about his overall experience as an unsupported Autistic adult in our modern world.
Song Of The Day (Listen Here) - https://open.spotify.com/playlist/5UDIyN5TSYN4zMcRoQPrG8?si=9255ed3480d840b5
Interview me, 1:1 Talk With Thomas, public speaking for events & workplace training - https://linktr.ee/thomashenleyUK
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Transcript
Introduction and Living Independently
00:00:07
Speaker
good day and welcome back to the 40 audio podcast with your host as always mr thomas only how are you guys doing today today's episode we're going to be talking to a very lovely man that i met um online a guy called uh pedro ferrara and we're going to be going through a lot of the different aspects of living as an autistic in this very neurotypical world we're going to be talking about
00:00:37
Speaker
things around independence, something that I saw from a company called Drexel University, apparently around one in five of autistic people have ever lived independently since leaving high school.
Isolation and Employment Challenges
00:00:52
Speaker
We're also going to be talking about romance, platonic relationships,
00:00:58
Speaker
you know we see a lot particularly for autistic people in terms of the isolation statistics with around 79% of autistic people reporting feeling socially isolated which is an absolutely
00:01:14
Speaker
crazy, crazy number. And then we're also gonna be talking about employment, which is something that I think a lot of people can also struggle with. A shocking kind of data that I've seen around is that only 22% of individuals have any type of employment.
Improving Quality of Life for Autistic Individuals
00:01:31
Speaker
And that's not talking about just full-time, it's even talking about like part-time employment and stuff. So the reason why I got,
00:01:40
Speaker
got sort of chatting to Pedros because a lot of the things that I particularly want to do with my work in terms of raising the quality of life, would you say statistics, the quality of life, raising the quality of life of autistic people,
00:01:57
Speaker
because it is very, very difficult living as an autistic person in today's society, particularly in the past.
Bullying and Harassment
00:02:08
Speaker
So we're going to be talking about those things that I've said with Pedro. We're also going to be speaking about the particular incidences of bullying and harassment, which I know is also
00:02:21
Speaker
a very common thing for a lot of autistic people having those experiences online in the workplace at school. And we're going to kind of tie this together and talk about how, you know, all of these kind of life statistics can impact someone's mental health and confidence.
00:02:42
Speaker
So Pedro Verreira is 40, and he describes himself as kind of falling through the cracks with being autistic. And I really want today to be an opportunity to kind of highlight some of, I guess, the real angles of these stats that we see online and talk about the impact that it can really have on people's lives when we're not included.
Personal Experiences and Social Challenges
00:03:13
Speaker
So Pedro, how are you doing today? I'm all right, thanks. Thanks, Thomas. Good. I know when we were just chatting before we started recording you were telling me about your recent birthday. How did that go for you? It was all right.
00:03:32
Speaker
I had most of my closest family around me. It wasn't anything hugely big or anything. It's kind of a shame that I wasn't given a bigger 40th birthday. It was a bit of a missed opportunity. It's a big day, isn't it?
00:03:54
Speaker
I think that's partly because of the lack of friends I have and due to the autism and stuff like that. I think I've had more friends around me than I'd be able to celebrate more. Plus my parents don't really believe much in birthdays. They don't see the importance of birthdays.
Societal Expectations and Independence
00:04:18
Speaker
yeah yeah i um i have i have sort of a weird relationship with birthdays i've had some really good birthdays in the past but i think there's just some some aspect of like the expectation both on on me to to have a good time and to be happy on my birthday and also like the expectations that i might have on on other people to to make me have a good day so i always have
00:04:45
Speaker
pretty difficult time when it comes comes around to my birthdays. Same with me. I mean, I set mental goals for myself as to what I want to have done by the time I reach a certain birthday, especially when I reach 40. And so there's been a lot of pressure over the past few years to to fill those goals before I reach 40, kind of expectations and also my own personal goals.
00:05:14
Speaker
And because I haven't done those, it's given me a lot of anxiety, a lot of pressure and feeling exhausted mentally and physically and stuff like that. So yeah, it's so difficult to be powerless, to be able to
00:05:34
Speaker
to be able to get stuff done that you want to get done by a certain date. But then at the same time, people tell me that there are expectations by the time you reach a certain age that you have to have done certain things when that's not true.
00:05:49
Speaker
And it's just, if you get that reinforcement that you do have to set deadlines by a time your certain age, then it's very difficult to go against that, you know, and to think positively.
00:06:08
Speaker
Sure, and I think that's something that has been reflected both in my work with autistic young people is that there is a very large sense from anyone that I've talked to that they feel like they're kind of falling behind with things or they're not meeting these kind of societal expectations of them and I think overall that can be very
00:06:34
Speaker
damaging to us because it's already quite difficult sort of adjusting to and navigating the world that we live in and for a lot of people who aren't autistic they can struggle a lot too and it's like this kind of
00:06:50
Speaker
compounding variable of things being a little bit different for us, some things being harder, particularly stuff around life skills and things like that, that can make achieving those goals and those milestones really difficult. One of the things that I think comes to mind is things around driving. I know how to drive. I've done my test, I've passed it.
00:07:19
Speaker
can't do it on a regular basis. It's just not something that I can manage with my anxiety levels on a daily basis. It's nothing that I can crutch on, if that makes sense. So I guess where I really want to start off with our chat
00:07:40
Speaker
It's kind of starting a little bit more at the start, but also touching a little bit in the independence aspect, the thing that I was talking about. As I mentioned at the start, one in five autistic people have ever lived independently after leaving high school, which is, I think, although it's not necessarily a horribly bad thing, I think it's something that a lot of people can
00:08:08
Speaker
let it impact their self-esteem and it can also impact the way that other people see you as well, just from my own personal experience.
Late Diagnosis and Educational Support
00:08:16
Speaker
So when were you diagnosed and what has been your experience with attaining that independence and those life skills up until now?
00:08:27
Speaker
So I was diagnosed very late, unlike a lot of people today. I was diagnosed in 2019, which is, I mean, I was born in 83, so you can see quite a lot of times passed. Yes, yeah. And so what age were you? Were you, sorry? I was about 37.
00:08:52
Speaker
Wow, that was a very late diagnosis then. Yeah, it was. So I had already been diagnosed very late with learning disabilities as well. So dyslexia. I think I have undiagnosed dyspraxia as well because I'm quite clumsy. But dyslexia, definitely, I was diagnosed after I did my GCSEs. So only when I retook my GCSEs did I get a diagnosis.
00:09:20
Speaker
And apparently they knew, I think they sort of had an inkling or they knew beforehand when I was doing my GCSEs that I was dyslexic, but they didn't tell me. So I thought that I got extra time in the exam because I was slow at writing, but now in retrospect, they told me that it was actually dyslexia.
00:09:45
Speaker
So since I was born, I was always a very quiet person and very non-social with other kids. And I would have problems socializing with others. I'd have social anxiety. I wouldn't know exactly how to communicate with other kids. So in nursery, for instance, I had problems joining in with other kids.
00:10:13
Speaker
playing around or whatever because I didn't know how to. So I was just on the sidelines a lot. That's something that I've experienced as well. I think when I did my podcast with my mom talking about the way that I was around other kids, I was very much like standing at the sidelines kind of observing what's happening.
00:10:37
Speaker
I don't remember this, but from what I've been told, I was actually taken out of university. I was taken out of nursery because I was having such problems getting along with other kids.
00:10:53
Speaker
and being in that situation where sensory environment of having kids around me was just too much for me. I remember I was upset quite a lot and even at that age I was picked on. I mean I've been picked on quite a lot over the years because of my disability and I've certainly been looked down upon because of my disability my entire life but
00:11:16
Speaker
And even back then, though, I was sort of picked on because of my because of the way I was acting. And it wasn't seen as the normal way to behave. So, yeah, that and that continued, I think, throughout my school schooling year. And I kind of didn't really make one many friends. I had I have one friend. Yeah, one good friend who I've known since primary school. And
00:11:46
Speaker
And he's the only person I've ever consistently talked to or spoken to. And he lives far away now, so I can't see him every week. But it's impacted my ability to socialize with other people in the sense that socializing with others has been
00:12:13
Speaker
It's very difficult to have a voice in a group with a loud people. Yes, yeah. I feel like everyone is talking over me, so people have probably a deeper, higher voice. So their voices come through more easily, and they will talk over me. They will just... I will be drowned out if I...
00:12:40
Speaker
try to, if I try to make a joke or something, I'll be drowned out by someone who makes a joke first or something like that. And also trying to find similar interests as well. And I think that's another thing as well. But- Yeah, what are you interested in? Did you say that you were like kind of- Yeah, well, I'm a bit of a film buff, a bit of a TV buff.
00:13:06
Speaker
I'm into video games, retro collecting video games. Unfortunately for my parents, I have a very expensive hobby. I think it's partly OCD, but partly because I like it as a hobby because it's interesting to be able to
00:13:27
Speaker
go after and collect something. I love collecting things. That used to be my staple, whether it was playing game cards or Pokemon apps on your games.
00:13:43
Speaker
or even just like types of rocks or types of figurines or like paperweights at one point. My grandma actually took me to a car boot sale once and I saw a paperweight and I was like, ooh, looks, it was kind of this red one that had like these bubbles in. I was like, oh, I quite like that. So she got me it. And then for like the preceding like every birthday that I came across, she'd buy me like this, like increasingly more elaborate paperweight. So I just ended up with this like,
00:14:11
Speaker
box, like this really heavy box of all these favouries. Well, I'm a bit of a hoarder, but I know exactly what I want to collect for, but obviously there'll be other things that come up during the year, like maybe a book to do something else that I'll be interested in buying or something, but it'll still be pricey. So
00:14:35
Speaker
But the thing about retro gaming is that it's getting more and more unnecessarily expensive. Sure. Because there's this bigger sort of demand in supply and demand, I think they call it. Yeah. Yeah. So because the nature of retro games is that they are retro, like the supply of them is naturally quite limited. Yeah. I mean, most people, when they go for
00:15:05
Speaker
collections, and you'll see them post, they always post online their collections. They'll do unboxing videos or something like that, where they'll show off their collection. And I've been collecting now for years, since 2009 at least, 2008, 2009. But I've been a slow collector. So there have been people that collect
00:15:29
Speaker
sets of games over a period of a couple of years and they complete their collection and then they go and flip it for outraged prices or whatever. So I've been in it for the long haul because it's been a financial issue. I haven't devoted all my money to that.
00:15:55
Speaker
It's a good hobby, but in a perfect word, I'd love to have it all funded by someone else because it's just crazy. I suppose by the nature of it, it could be some level of...
00:16:10
Speaker
say like some people go and like they buy like gold or they buy like assets that are not money and then it kind of appreciates over time or that kind of thing. So maybe at some point your collection might be worth like a lot of money. Yeah and you know I never see it as I realized that I could
00:16:33
Speaker
I could sell it and get a lot of money. But the thing about it is that this is what makes me happy. And second of all, I never wanted to buy a collection of games so that I could flip it for outrageous prices. I always wanted to keep an archive of a library. So people have
00:16:55
Speaker
libraries of books. I wanted to have a library of video games to refer to so that I could talk about them and stuff like that. But yeah, I think having autism can give you a bit of an obsession about things and that's kind of annoyed my parents a little bit in the past.
00:17:21
Speaker
because they don't like to hear about my obsessions. I got them to watch the TV show, Quantum Leap, and they really do not want to watch that show, but I kind of forced them to watch that show.
00:17:37
Speaker
It's an older show as well. It's not a new show, and they don't mind watching an older show, but it's just the fact that it's not really their style of what they want to watch. It's got a good rating, hasn't it? I haven't seen that one. It seems to be about time travel. Yeah, they rebooted it recently with a new cast, but the original one was around from the late 80s to early 90s.
00:18:08
Speaker
And it was a well-meaning kind of science fiction show about a guy who sort of wants the time travel, and he accidentally finds himself in the body of other people, and he's putting things right that once went wrong at the power of...
00:18:26
Speaker
through some force, whether it's God or some entity or power or whatever, he's being asked to do this. So he's unintentionally jumping from one person's body into another, and he's fixing people's lives.
00:18:46
Speaker
He's kind of bumbling his way through it the best he can because he's not an action hero, he's a scientist. That's interesting. I'll probably have to check that out. I'm very bad at watching older movies. I just mostly consume television through Netflix and stuff.
00:19:07
Speaker
very episodic so it's not serialized so it's only serialized and that each episode ends on a cliffhanger for the next episode. Right, right. So yeah. Like Doctor Who kind of style.
00:19:24
Speaker
Yeah, yeah, Doctor Who sort of, yeah, similar to that, yeah. Although this was kind of rare in the late 80s to have a TV show that kind of ended on a cliffhanger. Most TV shows would end, would just end their episode and then you'd go next week to watch the next episode, so.
Transitioning to Adulthood
00:19:42
Speaker
Yeah. That's interesting.
00:19:45
Speaker
It has interesting view of the future as well. Very outdated view of the future, but very interesting view. And it's a shame that they didn't keep it for the reboot because the reboot is very clinical. It's very much like watching NCIS, which is by the same people, actually. Yeah. Yeah. Interesting. Well, I enjoy chatting about this stuff.
00:20:10
Speaker
but I'm just disinterested. I know you've told me a little bit about your overarching experience being autistic in a bit more of the younger age, but one thing that seems to come up for me a lot, and just by looking at a lot of the programs that are out there, the level of support for transitioning to adulthood is very, very limited. We could talk about,
00:20:39
Speaker
how limited the education systems can be in supporting autistic people. But the actual transition period, usually about 18 to 25, very, very limited. There are a lot of schemes and stuff in the UK which particularly target that group.
00:20:57
Speaker
But there's pretty much zip for anything outside of that age range. And it leaves a lot of people kind of, as you said before about falling through the cracks, where you don't have that support with moving out, developing a social group, developing independence, living on your own, those kind of things. It's not something that's necessarily taught in school or
00:21:28
Speaker
Guided after after you finish this and especially in your case, you know, I'm not having a diagnosis autism diagnosis I Imagine that that's that's even even more difficult but um in terms of independence like what what has been your experience with trying to trying to attain that like Have you come across any hurdles? Yeah, I mean I I
00:21:54
Speaker
I've never felt like I've been competent to do things by myself. And you mentioned, for instance, driving. I haven't learned how to drive. But stuff like living by myself has been a struggle because I haven't had a job to financially support living by myself.
Employment Struggles and Mental Health
00:22:21
Speaker
And I've been given no support financially as well, because again, I fall out of that. I fall through the cracks of what I'm entitled to. So I can get personal independence payment, but that's it. I'm not entitled to anything else because I have a savings account. So you have to waste your savings account in order to be able to
00:22:46
Speaker
get benefits. Yes, which is kind of goes completely against the whole point of saving up really savings account, essentially. I mean, they're asking you to save money. But then at the same time, they're not willing to give you support in order to save money. They want you to waste money so that you can rely on them for benefit. It's as soon as I started to put myself in a situation where
00:23:17
Speaker
I was looking for a place to live. It's been one hurdle after another trying to get support based on my neurodiversity. And it's a complete nightmare. And I've kind of, I've got a caseworker on it, but I've kind of left it to her because I can't manage that myself anymore because I'm concentrating on trying to get a job. Yeah.
00:23:45
Speaker
And even that, I'm getting help now trying to apply for a job because applying for a job would give me independence as well. But the problem of applying for a job is that I, again, in terms of employment, I've fallen through the cracks. And you've spoken about how people who left school or university have not had the kind of the tools or the support needed to be able to progress into adult
00:24:16
Speaker
Well, when I left university, I thought my prospects were pretty good. I thought I was going to do okay, but as soon as I saw myself
00:24:30
Speaker
within the same job as everyone else, I suddenly realized that I was, I was small fish, you know, I was not going to get any support that I, regardless if I had dyslexia or not. What my degree level did not mean anything to, to basically getting a job in film and television or,
00:24:59
Speaker
film reviewing for magazines and stuff like that. They were happy, companies were happy for me to work for free, but they weren't willing to pay me. They're kind of shuttling down the volunteer routes. There have been many
00:25:18
Speaker
temporary roles, unpaid temporary roles or paid temporary roles, where I would have liked to have been developed as an individual, because those are jobs that I actually really enjoyed doing. But the thing is, I was never given any development support. None of my possible talent was nurtured.
00:25:46
Speaker
So I've kind of gone through life stumbling from one job to another, trying to make a career of myself. And as a result, I don't have a career because I got horrible anxiety issues, which affected me and made me have debilitating symptoms of anxiety.
00:26:10
Speaker
getting up in the morning and doing things have been difficult for me depending on how bad I have anxiety issues. I relate to that a lot. Yeah. And because of the Covid lockdown and then trying to get in
00:26:26
Speaker
back into work after COVID lockdown. It's been a complete nightmare. And you'd think that with my CV and what I have on my CV, that it would be enough experience for me to be able to get sort of a novice role within a company, but it's not. I'm back at square one again. I've not been given the kind of support that I should be getting in career
00:26:55
Speaker
development. Do you mind me asking you a little bit about your parents' perspective on the independence aspect of it? Have you had much feedback from them? Do they have any worries about that aspect? My parents have great worries about me. They don't understand the nature of my neurodiversity.
00:27:23
Speaker
my autism, my dyslexia, they're generally worried for me. And they're in a lot of, they suffer quite a lot because of that. For me, it's disconcerting that I can't like give my parents the kind of relaxation they need in terms of not having to worry about me.
00:27:53
Speaker
But there's a lot of pressure on me. And I think a lot of the anxiety issues that I've had have come from the pressure I've received from my parents in terms of trying to make something for myself so that I can be independent, whether it's a job or anything else like that. In terms of employment, it's been incredibly difficult
00:28:22
Speaker
issue where I've tried to go for jobs and even with my CV, you think I have a lot of experience, but it hasn't meant really anything to an employer. And they look at my... Is that because I know I from experience a lot of the things that autistic people that have taught to tend to struggle with is like the interview process, particularly when like applying for jobs.
00:28:50
Speaker
Well, it's not the interview process that's been my stumble. It's actually getting an interview based on my application. My application has been the big problem. My application gets ignored completely. I've been told by someone at Job Center Plus who deals with neurodiversity, actually, and she told me that I should not be applying for jobs by myself. And that's why I've been getting help trying to apply for jobs, because
00:29:20
Speaker
The way I interpret questions, the way I respond to questions, is obviously not working for them, because I don't even get an interview for a job. And these are jobs that I could be really good for. These are jobs that I'm suitable for. I've got a huge amount of experience as an archive assistant.
00:29:47
Speaker
But I can't get those types of jobs because I just apply in a way that they don't understand. It doesn't interest them in some way.
00:30:01
Speaker
So that's confusing for me because if you have the requirements for a particular job, it's within reasonable adjustments within the law that you should be offered an interview. Well, they say if you have the requirements, but if you meet the requirements, sure, but
00:30:27
Speaker
They may say that somehow you don't meet the requirements and then that is seen by them as a good excuse not to have me come in for an interview or something like that. If they look at my CV, clearly they can see that I have enough experience.
00:30:43
Speaker
for it. Yeah, and you should be offered a job if you have the experience for it, which is... But based on... Based on... Or not offered a job, offered an interview, at least. Based off the application, I'm not getting an interview and that's the main problem. I mean, we can go through the conspiracy route, but I don't have any data. I don't have any... I don't have enough
00:31:08
Speaker
kind of evidence to suggest that it's a blacklisting thing or for some reason it's because I am neurodiverse. One thing that seems clear to me now, having applied for so many jobs over the years, is that there's a disability confident website where it has a whole list of companies
00:31:38
Speaker
that have disability confident next to them. And they can support people with disabilities kind of thing. That's right, that's right. So they don't, I think very few of these actually are disability confident. I think they see it as a label. The companies, when they put disability confident
00:32:07
Speaker
onto their website or whatever, I think that they see it just as a kind of a label to say that they're disability confident. I don't think they really are because there's, in my experience applying for jobs, I haven't had any interviews for jobs or anything like that. And it's a shame because again, these are jobs I could be going for, but there's so much competition, but why am I not the competition?
00:32:37
Speaker
Yeah, yeah. Sorry. You go first. You go first. I think that there is definitely some, particularly because you've applied for jobs and you haven't been offered an interview and you have the skills and you have the evidence for that. They should be offering you an interview at the very least because
00:33:07
Speaker
You know, it is something that is kind of mandated by reasonable adjustments. And I would say that in a lot of those cases, perhaps approaching like an advocacy organization who would be able to
00:33:22
Speaker
advocate for you in those circumstances, then that would be probably the ideal situation. I know that particularly with application processes, interviews, things like that, it's very often quite
00:33:37
Speaker
unspecific the questions that they ask like they don't ask you very specific questions that they're like oh tell me about this and i'm like oh okay what what about this about this or you know how do you want me to communicate this information that you want from me
00:33:54
Speaker
And I find that even with things like exams and stuff at university, you know, the questions are not clear enough. And, you know, I think, you know, perhaps if if organizations were a bit more clear with the language around the questions that are used and they provided some detail about how they want you to answer them, then it would be a lot better. There was a company that I applied for. It was a archive assistant. It's a well-known online company.
00:34:24
Speaker
It was for an archive assistant and I applied for it and I did my CV, I did a covering letter and the covering letter gave a lot of good information that they needed.
00:34:40
Speaker
And they say on their website, if you need reasonable adjustments, if you need us to contact you about what is going to be put in your application, please contact us and we will contact you back to talk about your application to you as it's being submitted.
00:35:00
Speaker
if you're if you fall within the disability bracket, you know, so I did that. And they were nice enough to come back to me and they were nice enough to talk me through my
00:35:11
Speaker
application and I thought, hey, this is great. I mean, I can't fail here to get an interview because they're actually helping me go for the role, essentially. They're going to ask me further questions and the answers I'm going to give are going to add to that application. This is terrific. They did that and I didn't get the interview.
00:35:38
Speaker
And I thought, so even with their help, I still didn't get the interviews of what's going on. Well, they actually did provide feedback because I'm neurodiverse. They actually did offer feedback. And their feedback was very, very strange as to why I didn't get to interview process. They gave me the excuse that there's a lot of competition. Okay, fine. Why, with my experience, why did I still not be the competition?
00:36:08
Speaker
But the other thing was a lot, their feedback seemed to be mostly nitpicking, real, real nitpicking so that to try and tell, give me reasons why I didn't get an interview, but stuff that, stuff that I forgot to include in my application that I wouldn't think to include. Unless they asked you.
00:36:32
Speaker
Yeah. I mean, really silly stuff, Thomas. Really silly stuff like, are you aware? How would you, in a workplace, how would you promote IT? And I'm like, but for an archive role, archive assistant role, why would I want to promote IT to my fellow colleagues? I don't understand. Why would I need to know that? Yeah, I don't understand that one either. The other one was,
00:36:59
Speaker
you didn't show that you were aware of diversity in the workplace it does it seems very very random like extremely random particularly a lot of perhaps organizations use like other means to to give give evidence for why they don't hire someone or why they why they let people go and they tend to be very
00:37:28
Speaker
like as you said kind of weird and off-topic and a bit nitpicky because I think a lot of people they don't like they see the needs that we have in terms of sort of fitting into the workplace and that they don't want to say that it's because we're autistic or because we're disabled because
00:37:53
Speaker
That's against the law, that's discrimination. So I think, particularly for individuals, which there's quite a lot of people who might struggle with the social atmosphere, the social inner workings of the organization, not being a good fit for the team, that kind of spiel that they can give.
00:38:15
Speaker
That can really harm us because although we have the actual technical skills and experience, they don't hire us because they don't think we'll get along with the social environment, which is funny because that's kind of what you need to do when you are including someone who is different in an organization. Yeah. And can you imagine if those were the excuses as to why I didn't get previous
00:38:44
Speaker
interviews. I mean, I've applied for so, so many roles over the years. I can't keep track of how many roles I've applied for. Some of them have been kind of half-assed, kind of like, you know, like I've applied for the roles. I think, well, if I get it, I get it. If I don't, I don't. And then there's roles I've really, really wanted and I put huge amounts of time and effort into applying for. And I didn't even get an interview. And I mean,
00:39:14
Speaker
I don't understand. Yes, it's really bizarre and crazy to me. Have you had any experience with paid employment? Oh, yeah. I've had a lot of temp roles in employment, and I've had a permanent role. I worked for a telecommunications company for six years.
00:39:39
Speaker
I started off as a temp there and I worked there for six years, but I did not really enjoy it. Like I could do the job. The job was fine.
00:39:49
Speaker
Did you have any issues within the job? Because I know that there is aspects of the social things and perhaps things around communication and clarity of instruction that can be quite difficult and also the sensory aspect of things and the social aspects of perhaps customer service related jobs where you have to talk to the general public.
00:40:12
Speaker
Well, the more heightened my anxiety is, the more sensory, sensitive I can be. So I get distracted very easily under pressure. Yeah, I get distracted very easily under pressure. And I didn't get along with the people there naturally. I was seen as the odd one now. I was seen as the bizarre guy, the loner, the weirdo, whatever. Because- Social discrimination and exclusion then.
00:40:40
Speaker
Yeah. And my bosses, I had two different bosses and they were actually all right to me in some ways, but they didn't know I was diagnosed with autism at the time and neither did I. So they knew I was dyslexic. That's fine. But they, they, they, maybe they would have treated me a bit differently if they'd known.
00:41:06
Speaker
that I was autistic. The thing is, I'm doing a job that's very repetitive and it's not in a field, it's not in a sector that I've really wanted to work in. I was going all the way to Stevenage to work in this role. What kind of commute is that?
00:41:29
Speaker
It's one and a half hours away. One and a half hours. One and a half hours away. So taking the tube, then the rail. Wow. So it's one and a half hours there. So that's an added stress. That's three hours in total. That's three hours in total. So I'd come, I'd get home like about 7.38 o'clock.
00:41:50
Speaker
Yeah, for dinner. And so and I have to be at like nine o'clock each day. So it was it was and
00:42:02
Speaker
Again, I already had anxiety issues by this point. So every day waking up and going to Stevenage, like rushing to get to the platform on time, because the rail trains only come like every half an hour. So if you miss that train, you're going to be half an hour late. So it's just a complete nightmare. I mean, some of the people there were nice.
00:42:29
Speaker
But on the whole, everyone did not understand me because they didn't know I was autistic. And as a human being, I was not respected. If you think about it, I'm in a role doing work that is not what I'm most interested in doing, and I'm not being praised for it.
00:42:52
Speaker
It's like I would get very depressed sometimes when I was going to work that I was going to be doing this for the rest of my life. Eventually they made me redundant. Why did that happen? Well, they moved all of the work to India because it's cheaper. I could have got a job working. Did they give you a good reference and stuff?
00:43:19
Speaker
Well, if they've given me a good reference, I haven't seen it because obviously, you know, when you go for interviews, we need to get an interview to go get a reference. So they're down for, I think one of them's, one of them's at least down for a reference, but we haven't had to use them yet. So, you know, really. So yeah, unfortunately, it's been, it's been kind of crazy, but
00:43:42
Speaker
There have been roles I've really like jobs that where I've worked for a brief period of time, where I've either had temporary paid work or non paid work where I've really wanted to work. And I haven't been allowed to develop. And because I've been stumbling from one job to another, I've kind of fallen through the cracks of employment. Yeah. Yeah.
00:44:05
Speaker
Have you been in touch with any organisations which are kind of supporting you to develop that kind of path through things? I've had work coaches, but the problem is all the work coaches I've had have been very general work coaches. Their level of help has been
00:44:27
Speaker
has not been successful in me getting any interviews or anything like this. So I went through one organization recently and it was a bit disorganized. I have to say the guy was really nice to me, but I have to say that the guy
00:44:51
Speaker
The guy that I was speaking to, my work coach, he was so disorganized setting up and being aware of how to use the computer that I ended up spending half of the time lecturing him and tutoring him on how to use web pages and stuff like that.
00:45:08
Speaker
Jesus. Which is not what you want from a work coach. I should be coaching them. Well, it's been, I wouldn't say good, but it's been very informative to hear about your experiences. And I feel like a lot of people who are listening probably identify with a lot of the things that you're saying, especially late diagnosed individuals, you know, living and working.
Social and Romantic Challenges
00:45:34
Speaker
Nowadays, it's not the best. And even if you do manage to get the
00:45:38
Speaker
What do you say? The minimum adjustments and the interviews that are enforced for people who have the qualifications for it. It's still not an ideal for a lot of autistic people.
00:45:54
Speaker
I'm just wondering if we could kind of shift gears a little bit and I guess talk about the more kind of social-emotional side of things. Sure. You know, there is a large percentage of autistic people. There's a small percentage of people who don't, but
00:46:13
Speaker
a lot of people who desire to have romantic and platonic relationships. But it can often be quite elusive for a lot of people. And as we've seen with the statistics around social isolation, it's a very prevalent issue. And it often has a lot to do with someone's well-being outcomes, whether they have a good friend group, whether they have a partner. It's a very important part of living as a human being for a lot of people.
00:46:43
Speaker
So I guess what has been your experiences with friendships and relationships and what barriers have kind of come up that have prevented you from moving forward in these areas? I can't really speak much for relationships. In terms of friendships, it's incredibly difficult for me to make friends. That's partly because of my autism.
00:47:11
Speaker
Well, that is actually all to do with my autism. Trying to find people with similar interests is always difficult.
00:47:20
Speaker
It's not something that's like the stuff that I enjoy doing, the stuff that interests me, it's not easily researchable online because it's sort of hidden away on Facebook or it's hidden away as an advertisement on Meetup or something like that. But I mean, I have one friend and I've known this friend now for
00:47:43
Speaker
years and I still speak to him and he's still happy to speak to me, but I can't rely on that one friend. So it'd be nice to have other friends. Because when you have other friends, those people back you up. Those people give you positive reinforcements so that
00:48:06
Speaker
if you're being pressured by your parents, if your parents are having a go at you all the time, then at least you have someone who's maybe on your side, or you have a different point of view as well. It's not just about being on your side, it's about having a different point of view. And people who look at you in different ways is always better than people that look at you just one way. And I think criticism is good.
00:48:35
Speaker
in moderation and I think positivity is good also in moderation and at the moment I'm getting a lot of criticism and no positivity because it's a lot easier to criticise me than it is to be positive towards me because this is no secret but if you ask my parents or my sister
00:49:01
Speaker
what are the positive things about me. They'd be hard pressed to find good things to say about me. If you ask them negative things, they have loads of things that I'm not good at or problems that they have with me. That's not very nice at all.
00:49:17
Speaker
It's, it's, it's, it's one of those things where they're very honest about, they're not trying to be mean about it. It's their honest opinion. They, they're not interested, you know, they're not interested in my interests as well. So that is where some of that lack of positivity comes because they don't see, they don't value my interests. So. Sure. I know that the, particularly like, as, as I said, with that kind of post,
00:49:46
Speaker
kind of 18 age, you know, when we are in school we have pretty much all of our social interaction or opportunities for social interaction kind of laid out for us. It's not always the best and easiest and there's a lot of bullying and
00:50:05
Speaker
difficult situations at school but it is kind of set up like that and when particularly for me when i went off to university i quickly found out that if i wanted to make friends i needed to like find them i needed to go out and find friends and
00:50:22
Speaker
chat to people and it was something that i really struggled with at the time and it took me a long time actually to feel comfortable with kind of approaching people or talking to people or even going to events in groups and finding friends
00:50:37
Speaker
So it's definitely like a very unsupported aspect of things, but I know that someone in my own life, someone that I know, had quite a lot of success going to this place called the Andes Man Club. I think they have a few places around the UK, which is basically an opportunity for men to kind of meet up and
00:51:07
Speaker
have a chat and talk about like mental health aspects of things like things to do with their life things that they're struggling with and that the person I'm talking about is autistic and and they've found that to be really really really great for them but it's it's kind of like it's not set out for you it's not like after school they can be like hey let's let's help you sort your social stuff out for the time after school or
00:51:36
Speaker
This is the path that you're going to take down for going through work and there's not really much of that and I think that's really a tough part of life that I think it's taken me a long time to really get a grasp of and understand how to navigate.
00:51:57
Speaker
Well, I've tried to, I've tried to do, as you say, try to find groups to be involved with and try to make friends and stuff like that. But it's, it's kind of difficult because it's so easy to feel left out all the time. And I tried to go to London Film and Comic Con, for instance. Oh, nice. And
00:52:24
Speaker
I, my friend stopped going with me because he gets bored of like the repetition of going every year, unless there's someone that he really wants to see. He doesn't want to do it with me. Right. Doesn't want to go there with me. Right. But that was kind of like your, your kind of yearly kind of routine. Yeah.
00:52:41
Speaker
But the thing is, is you think you make loads of people because everyone there is like, mind you, you think you will make loads of friends, but I don't make I don't make any friends when I'm there. There'll be a couple of people that I get into conversations with. But for the most part, if you go to something like London Film and Comic Con, it's it's it's kind of everyone keeps kind of keeps their own little groups. No one wants to mingle. There's no one there's no one by themselves.
00:53:08
Speaker
I think now nine out of 10 times, there's no one by themselves. And it's a huge effort for me to go to London Film and Comic Con. I mean, it's got some of the worst things for autistic people there, like sensory, taking pictures with celebrities and stuff like that.
00:53:31
Speaker
It's a real hurdle for me. It's definitely hard to kind of form those friendships, and particularly something that's hard for me is maintaining friendships. I'm quite good at meeting people and talking to new people, but I think just the intricacies of
00:53:52
Speaker
you know how people are in terms of like texting and you know having to maintain things and having to organize things i think that's something that i really struggle with and also to be honest the majority of people that i'm friends with and people i know they tend to be not in my physical vicinity like they tend to be people that i know online and although it's
00:54:20
Speaker
you know, although it's good to connect with people who are kind of like-minded and they may be autistic themselves, it's still like, I feel like it's quite important for me to kind of get outside and go and do things with friends and things of that nature. Have you had much success with like making friends online? Like have you joined any kind of groups or
00:54:49
Speaker
Yeah, there's one group that I, well, there's a YouTuber who, he's a former, well, he's a former director, but he's an editor and producer. He has a YouTube channel where he does a podcast about films and TV and kind of like the sort of sideline. So his name is Robert Meyer Burnett.
00:55:15
Speaker
And he owns the kind of the Burnett work, as he calls it, and it's Robert Meyer Burnett. And he has a YouTube channel where he does podcasts and he has all these different podcasts that he's set up by with different people who have worked, who are working on those podcasts, about various corners of kind of geek fandom and stuff like that.
00:55:44
Speaker
Sure, sure. I suppose I'm meaning like, like chatting groups, like online, like Zoom, like peer support meetings or like group meetings that people do online or particular servers in Discord or
00:56:03
Speaker
you know, anything like that. And it could also be through things like social media, like particularly, I know a lot of people who have found, you know, friends and people to talk to, you know, they're kind of lonely and kind of isolated in their own country. And they talk to other people online who are also autistic. And they find that to be quite good, quite transformative for them.
00:56:30
Speaker
Well, I am part of many different Discord groups and Twitter pages and social media pages of forums and stuff like that. So I've met people and people do know me.
00:56:49
Speaker
I haven't, I'm not with any specific autism groups of any kind in that sense. What I have done, what I have done is every Tuesday or every, yeah, every Tuesday I go to a meetup group for autistic people. And so in Wimbledon, it's called the Sunshine Recovery Cafe. And.
00:57:18
Speaker
It is where people sort of talk about their week, how their week has gone. And we kind of chat about... We chat about any... It's funded by the NHS. Yes, it is, yes. And it's... I think for me in the long run, I feel that this is better than speaking online as a faceless person. I'd rather people get to know me in person.
00:57:46
Speaker
than just typing away hidden behind a computer? True. True. Very true.
00:57:54
Speaker
I get that. As I said, it's something that I feel particularly at the moment, trying to find people to do stuff with and go out and have a coffee with and stuff like that. It can be hard. And plus there's no one local to me as well. Anyone that I've sort of interacted with online, there isn't anyone really local to me.
00:58:19
Speaker
It's it would be impossible to meet up with that particular person anyway. So I think it would be, you know, useful to kind of talk about like the romance kind of relationship side of things. What have you tried in terms of that or is that kind of on the back burner to developing a friend group? I mean, the more I try to invest emotions into it, the more I'm disappointed and feel
00:58:46
Speaker
kind of. The way I see it is that I will get, I'll be as lucky to get romance as I am to get a full time paid permanent job. Right. What have you used in the past? Because I know that, you know, there has been some apps and things that
00:59:10
Speaker
I've tried different dating websites, but they're all like fake profiles and none of it's real. Not like Tinder, Hinge, Bumble. I mean, Tinder's, yeah. There isn't really anything that's actually agency based in terms of agency and agency looking for to bring people together. It's more
00:59:39
Speaker
you know, you get all these fake profiles and you have to scroll down these fake profiles and, oh, these people look very interesting, but these people aren't real. They're not people who are in London, they're people from another country and they're posting fake profile pictures. It's all a bit of a con to me, a bit of a scam to me. It's very difficult. I mean, especially if you're a man on dating sites, it tends to be very,
01:00:09
Speaker
Very, very difficult to get matches or find people that are willing to match and talk to you and also even further, like go and go on actual dates and meet you and stuff like that. I know that there are some services for disabled adults, but also for autistic people in terms of matchmaking and stuff. Have you looked into anything like that?
01:00:39
Speaker
I've tried, but I haven't been successful in finding anything that's been helpful long term.
01:00:51
Speaker
Yeah. It's tough. I think there's a lot of aspects to being autistic that can make it really hard, I think, in terms of dating. Like there's so many nuances to both texting and in-person kind of things. Everything seems to be very kind of indirect.
01:01:11
Speaker
very difficult to understand where you stand with somebody. I think that is part and part due to the modern approach to dating, which is very like, as soon as you see something or you don't feel completely 100% like you want to go and see someone,
01:01:32
Speaker
it's kind of like oh well i'll just see what else is out there and i'll do that and it kind of goes goes in like a leap for a lot of people i mean i use social situations like going to london film comic con as
01:01:45
Speaker
practice for going on a date because it will have all the same social anxiety issues, the autism issues like the loud noises and stuff like that. When I get pictures taken with people at Comic Con, that in itself is like trying to meet someone for a first time and saying hello and you're shaking their hand and putting your arm around you and
01:02:09
Speaker
stuff like that, it's very nerve wracking. And that is similar to meeting a woman for the first time, because you've maybe met someone online, and then you're going to see them in person. And it's, you're trying to make conversation with them and not come across like you're totally weird, you know. Yeah, yeah.
01:02:30
Speaker
I mean there are issues in terms of dating that I suppose like, you know, even going further than that, the aspects of maintaining relationships, particularly when it's a neurodiverse one with another
01:02:46
Speaker
autistic person even and also particularly with neurotypicals, holistic individuals it can sometimes be a very very very difficult thing to navigate and there's a lot of you know you were talking about kind of like fake profiles and stuff you know well there's there's a lot of people who do take advantage of people who are struggling to kind of find find someone to develop a relationship with and stuff and it's definitely something that I've heard about a lot
01:03:16
Speaker
I've also, I mean, I've also almost been conned a couple of times before. But for the most part, they're not very clever about trying to scam me. So I've kind of seen through it. But yeah, it's if I was, if I was really, really desperate for interaction with a woman online, and I
01:03:38
Speaker
looked at these dating sites, I could get taken in by all of these profiles. And I could spend money to speak, to get a subscription, to be able to send messages to speak to these people. Because I think most dating websites, you have to pay a subscription to be able to message.
01:03:57
Speaker
Sure. So, so you're kind of just wasting your money in the sense that you don't know if you're going to get anything out of it. I've tried a bit, I've tried a couple of times, but it's nothing good has come out of it. So the few times that women have talked to me on dating websites has been basically we just don't have anything in common. Nothing to, no, no, no interest. No interest in common. No, no. Yeah.
01:04:27
Speaker
Ay up, just popping on to say thank you for listening to this podcast thus far.
Online Harassment and Community Toxicity
01:04:32
Speaker
If you could do me a real solid, please make sure to rate the podcast if you're in a podcasting streaming service and do all that like, subscribe, comment stuff on YouTube. Damn, even send a heart in the comments if you don't feel like typing.
01:04:47
Speaker
Make sure to check out my link tree, which is always down below in the description or head over to my Instagram page at Thomas Henley UK for daily blogs, podcast updates and weekly lives. This podcast is sponsored by my favorite noise cancelling noise reducing earbuds that you can adjust the volume on. Really, really great thing. They're called D buds and you can find the affiliate link down in the description of this podcast. Anyway, I hope you enjoy the rest of the podcast. That's all from me.
01:05:17
Speaker
Well, you were saying before about the last thing that we were going to chat about was specifically around one of the reasons why I think you got in contact was to talk about your experiences with bullying and harassment online. Yeah. I know that you sent me some documents. I'm going to try and pull those up first before we speak about them.
01:05:44
Speaker
i think it would be it's it's very much something that is a problem bullying harassment things like that that's something that i think happens for a lot of autistic people even just out and about in the world or workplace or in school it's very much like something that we struggle with and especially online and also i think that there is an issue within
01:06:11
Speaker
the autistic community where there's kind of a minority of individuals who are very aggressively vocal about their opinions on certain things and they're very harsh with anybody who kind of doesn't fit this the ideals of language that they want you to use or the perhaps the views that you may have of certain things related to autism almost to a point where they exclude a lot of individuals who
01:06:40
Speaker
are autistic and they want to enter into the community but perhaps aren't aware of the social nuances. I think that's a really big issue because ideally we want people who feel isolated and they don't have a job and they don't have the frame group and people around them.
01:07:04
Speaker
to be able to get support and to be able to be part of a community. So, right, so you've kind of sent me a few, sort of, I guess, parts of this stuff. Yeah, out of context it doesn't quite make sense, some of it, but some of it does, and like, some of it obviously wouldn't need context by me, but yeah, it's...
01:07:26
Speaker
Yeah, would you be able to talk a little bit about your kind of general experiences with people online? Yeah, sure. Part of being autistic is having opinions that not everyone's going to agree with. You can have opinions that are not the populist opinion and that can relate to anything like film or TV or entertainment or politics or religion or
01:07:56
Speaker
whatever. And if people know you're autistic, if they disagree with you, if you don't have the opinion that they want, they can shut you down. They can make life difficult for you. Or even if they don't think you're autistic, even if they don't know you're autistic, if you don't fit within the kind of opinions that they have, they can be quite controlling and
01:08:26
Speaker
You can get banned from forums or you can be bullied and harassed. You can get blocked on Twitter. I think what tends to happen on Twitter is that some people can be quite accepting of me because I say I have a disability on my Twitter profile. They can be quite accepting of that. And then when they start to read what I post,
01:08:57
Speaker
they will become very defensive and say, why did you say that? They'll kind of turn on me because really what it comes down to is that they don't know me as a person. And if I'm agreeing with them, they're absolutely fine with my disability or they're okay with my opinions in general.
01:09:20
Speaker
But if my opinions are not what they want to hear, then they can turn quite rapidly on me. And that's why people can get blocked very easily on Twitter and stuff like that. I've been blocked from so many different forums for having a different opinion. People do not like different opinions on things. So what is it exactly that people don't like about
01:09:50
Speaker
Well, I mean, it could be about politics, maybe the fact that my views aren't progressive enough for them. So they'll call me all sorts of horrible names, or they'll say I'm not allowed near the internet. There's a whole amount of harassment I got for supporting a games console called the Intellivision Amico.
01:10:20
Speaker
And that's where all those folders I sent you of all that stuff has come from. It's me taking evidence to show the kind of behavior and hysteria around a games console that might not be released. And what's people's particular, like, why do people have a particular rejection of this?
01:10:45
Speaker
They see it as a scam, but also it's threatening their hobby. It's a gatekeeping. So it's partly because they think it's a scam and they feel they're doing some kind of justice to the community, but also they're gatekeeping because the console is doing something with its gaming that they don't like. They feel it's an intrusion on their way of gaming.
01:11:15
Speaker
You've got to understand, a lot of the people who are complaining are hardcore gamers and they're not into casual gaming. And what I found throughout this, I mean, the whole study could be done about this games console. But what I found is that there is a huge gap between, there is huge gap between what hardcore gamers are looking for in games and what they accept and what casual gamers
01:11:44
Speaker
except as gaming. And so there's been a lot of that kind of sort of taking sides. And now the kind of the anti side of that, the people who don't support that console, who don't like the console, don't like the CEO, whatever, they are
01:12:09
Speaker
They're trying to get rid of the people who do support, still support the holdouts like me. Well, do you mind if I read some of the comments that people have put just to give people a bit of, I guess, understanding?
01:12:32
Speaker
Yeah, yeah. I mean, I would recommend a documentary that someone has done on it. Unfortunately, this documentary is very biased. So it's in itself is what people, when people look up the name of the console, it's the first thing they see. But it's not quite, it doesn't tell the entire truth. And
01:12:54
Speaker
I got into trouble with the guy who made that video because he didn't like me. He didn't want to hear some of the criticisms I had of the, uh, this documentary. Is this the sweet and tender hooligan person? No, it's the person who did doc doc documentary was called, uh, DJ slope slopes games room slopes game. So like four, four hour documentary.
01:13:19
Speaker
So there is a comment with someone who is replying to you who said, at PM Ferreira, those dudes are under that bus because they are still in the fetal position as the bus rolls over them. Literally, all they have to do is get out of the way, but they don't by choice. Ever noticed how someone like Cyrus Martin isn't a regular subject in my videos? That's because he finally saw Amico and Tommy for what they are, and he acted upon the revelation.
01:13:49
Speaker
someone like me is so insignificant in this whole situation amico forever forever does it to themselves peeing on their own feet if you will then you've got someone like yourself someone who means well and is just trying to stand up for these guys however the way you defend them with snarky remarks and trolling only adds to the fuel fuel the fire and makes people hate amico forever even more
01:14:15
Speaker
it's a good job you do more damage than even the nastiest anti amico troll yeah so well what is the context of that kind of situation so so this guy who this guy has actually such a rabbit hole to go down to
01:14:33
Speaker
down, and I advise anyone listening, do not go down this rabbit hole. Once you go down this rabbit hole of learning about this console, it is the most toxicity I've ever seen around a games console before. There are people who have devoted their entire YouTube channels to making parodies of this console and the people who support it.
01:15:02
Speaker
they've devoted their entire YouTube account to this console. Right. So it's a very, very, very controversial kind of issue. I mean, I understand that it's kind of the situation is probably more nuanced than, than would be able to be explained just, just from what you said. But I think there is something that I think would be worth talking about is kind of like,
01:15:25
Speaker
What kind of impact do these kind of interactions that you have on these forums or these videos and channels and stuff have on you as a person, like have on your kind of mental health and your kind of self-esteem and confidence? Well, for me, it's given me kind of, it's fed into that depression that I have and feeling upset, feeling alone.
01:15:55
Speaker
There are a couple of people who try to see things, try to give a more neutral approach to this, but they're shut down by the people who dislike the console. And so they're in a minority as well. And so, you know, I have an online stalker. I have an online stalker who reposts randomly, reposts anything I've ever said on social media.
01:16:25
Speaker
on Discord. So that's not okay. I mean, I mean, this is they they on this discord channel, they repost. Basically, anytime anyone's mentioned the name of the console, they've reposted the comments, but they've reposted the tweet or comments by this person. So anytime it's ever been mentioned, that's how obsessed they are.
01:16:54
Speaker
either to shame those people or to point out, here's something to look at today, guys. And that's how obsessive it is. It's going into people's personal lives as well, finding out what car they're driving. People have got boxed over this, I think.
01:17:23
Speaker
Yeah, well, yeah, yeah, people have apparently. Yeah. Yeah. So it's it's been incredible. But for me, it's what I feel what I find when it when it comes back to the whole appreciation thing, it's like if I'm not getting appreciation in the real world, I kind of would like it online. But there aren't people backing me up. And people that I thought were friends to me, people I thought would back me up are
01:17:52
Speaker
are kind of taking the other side because they're YouTubers and they don't want to ruin their view count. They're making content like this slopes game room guy. He doesn't want to a lot of his a lot of his views are coming from the people who hate the console. And that's why he made the documentary. And he doesn't want to lose that. So he's he's kind of sort of
01:18:22
Speaker
encouraging, well, not encouraging, but he's going on this discord server. And he's, he's courting, he's courting those those toxic gamers. Because because he knows that they will be looking at that at his content in the future. Whereas me, if I go and I complain to him about the harassment, he will say that it's all because of me or it's all on me, or that
01:18:52
Speaker
he'll look at those comments that I've given you, those screenshots, and he'll say, that's because I rub people the wrong way. Which isn't fair to me because some of that stuff, even out of context, I wouldn't say that to someone. Some of that stuff to some people. I mean, that YouTube comment that you read out, that was threatening someone, saying that someone had
01:19:22
Speaker
got off YouTube, that had been driven off YouTube because of his parody videos on him. This guy had done parody videos, this sweet and tender hooligan or whatever, and on parody videos, and now he's, this Sirus Martin guy isn't on YouTube anymore because of it.
01:19:39
Speaker
right so there's a lot of kind of intimidation it's intimidation harassment harassment yeah yeah yeah doxing and and this guy sounds very very i just want to say that this guy since then has actually apologized but we'll see if he goes back to his old ways again
01:19:59
Speaker
And there are other people who have, there's one guy who screenshots everything to do with this console and he's defaced my profile picture on Twitter. He's maybe looked like a clown. And he reposts that every time on that Discord, if I ever said anything on that Discord, he would just post a picture of my clown, like clown picture.
01:20:24
Speaker
to make me look stupid, to say that they don't want to hear from me. I don't have a voice on there.
01:20:37
Speaker
So I continue to fight back, but it's a one man battle.
Lack of Support and Societal Change
01:20:41
Speaker
And there's no one in my corner who, who wants to hear from me because even if I send the abuse over, they kind of have their own lives and they'll forget about it after a week. They'll forget about, you know, believe in, even send the abuse over. What do you mean?
01:21:00
Speaker
Like, if I send screenshots that I've sent you over as proof, they'll forget about it after a week. My online stalker, for instance, is interesting because even though he's been reposting all my stuff, a few YouTubers have actually gotten contact with me, or at least one YouTuber's gotten contact with me to say he's noticed now how obsessive this person is.
01:21:27
Speaker
It sounds like, it's obviously not an okay thing for people to stalk and troll and just generally be nasty people online.
01:21:42
Speaker
yeah have you i mean have you considered just not being involved in in the discussion on that like is that something that you feel you could do because it sounds like you know but you know particularly for me you know i've had situations
01:22:00
Speaker
you know within my own work where people have not agreed and they sent me lots of horrible things like i'm a nazi and like just because of because i used to use the word aspergers as part of my profile picture when it was okay um and it only kind of changed and then i changed it so it's um
01:22:21
Speaker
so I've experienced that stuff before and I understand that there is a sense of like morality around situations like that where you when you feel like you know you're right about things and you feel like people are wronging you that you you kind of want to stand up and kind of speak about things but if it's getting to a point where you know you have people who are
01:22:46
Speaker
I guess attacking you or harassing you or things like that, have you not just considered like deactivating something or starting up a new account and just not being involved in the whole thing? Well I could but by nature I'm quite a stubborn person and
01:23:07
Speaker
Me too. I get that. I don't feel that those people should win. I think I would only do that. I would only do that if I could expose them for what they've done. Because I think this is what I've gathered together in terms of evidence is kind of
01:23:29
Speaker
I've encapsulated encapsulated just you don't even need to know about the console. But it's an encapsulation of how toxic social media can be. And I think it makes a very, I think this makes a really, really good case study, if someone wanted to do it. Because it is normally when people say stuff online, you don't get the full you don't you don't really get full context, you don't get full
01:23:58
Speaker
you only get maybe like one tweet or something online that you see, that's a bad tweet or something like that. With this, you have a sort of encapsulation of the whole entire thing and
01:24:16
Speaker
It's good to, it's good to study. I think it's good to kind of study it from a detached point of view, but also it brings to light the harassment that social media can provide as well.
01:24:32
Speaker
yeah yeah i mean i i understand that it is probably a lot more of a nuanced situation i guess i want to move away a bit from like the the the topic of of them and particularly the the the actual kind of situations and i guess talk a bit more generally about
01:24:54
Speaker
your kind of experiences, you know, the things that we talked about, the things about independence, the things about sort of relationships, friendships, and employment. You know, do you have any kind of, like, I know you've mentioned about kind of the OCD and the anxiety and stuff, but
01:25:14
Speaker
How has this impacted your overall wellbeing, all of these different factors? What do you think needs to change for people like you so that you can thrive and develop in the world? Well, I think the major thing is that reaching 40, it's given me this feeling in life that I want to make more of my life.
01:25:40
Speaker
I'm not getting that at the moment. I think the biggest frustration for me is that I am not being noticed. I'm not being seen. And it's not so much an ego thing. It's more that I'm not being given the same opportunities that I see other people get. And I'm perfectly capable of
01:26:05
Speaker
doing the types of work or doing the types of things that other people do, but I'm not being given the chance. I've kind of fallen through the cracks, and I'm not being allowed to develop, and it's not being heard, not being seen, not being heard, and not being able to contribute something positively as a legacy.
01:26:33
Speaker
at my age is really damning. And I think that's the biggest takeaway that sums up all of my issues.
01:26:48
Speaker
So I think that if I'd got more support to begin with at school or I could definitely have done better in terms of qualifications maybe. I haven't done too badly all things considered, so that's quite an achievement. But in terms of developing into someone who could work in an industry,
01:27:11
Speaker
I haven't been given that chance. I haven't been given that advocacy. And so I've kind of been left by the wayside. And so I'm just an old man yelling at the clouds going, come on, why don't you listen to me? Why don't you? And this encapsulates the harassment I get, the lack of jobs, lack of relationships, lack of friends, all of that.
01:27:39
Speaker
and my own insecurities about my health as well, all of that is because there's not enough awareness around me and not enough people noticing who I am and stuff like that. So I would hope that I can, I would hope at my age I could try to get through to more people, try to get more people to listen,
01:28:07
Speaker
And people seem to think I'm an intelligent person. I don't know how intelligent some people would say. Some people have worked for me, said I'm incompetent. So I don't know. But people, when they talk to me... I love that as well. I get very conflicting messages.
01:28:23
Speaker
Yeah, I mean, I think I spoke, I don't know if I spoke about this before, but half of the people who come up to me, when they look at my face, they think I look like a friendly person. They're happy to speak to me. They're happy to carry on a conversation with me, get to know me. They're interested in getting to know me. Half of the other people who
01:28:49
Speaker
come up to me they look at my face they think I'm brain dead because facially I'm not a person who expresses themselves very easily so which is untrue I'm not brain dead I'm just not I'm just not so there's kind of social assumptions that people have yeah so they think I'm incompetent or they don't think I can look after myself they think they think there's something wrong with me and I don't think it should be that way
01:29:17
Speaker
But that's kind of the thing about once people get to know you more, that's when they start to understand you a bit more. You can't do that just in person. You can't do that just online. You have to have a mixture of both.
01:29:35
Speaker
But I'm afraid, I'm afraid to, I'm afraid to get anyone to follow me on Twitter because they might be offended by some of my hot takes or, you know, some of the stuff I say. But I mean, well, sort of like I say, I mean, well, I don't mean to offend people. I don't try to make people's life horrible. I don't go on social media to troll.
01:30:00
Speaker
intentionally. I go onto social media to have fun, but I don't troll to hurt other people's feelings. I troll, but I don't troll to hurt other people's feelings. I'll make jokes. I'll make jokes. I'll be funny about something, but I won't try to
01:30:18
Speaker
intentionally be rude. And if I am, and if it's pointed out that I am, and how I've hurt someone, I'm more than happy to apologize. Because I'd hate to think that I could upset someone else. I didn't mean to. Especially someone's feeling social rejection for me is the worst thing. Yeah.
01:30:43
Speaker
So it is something that I feel a lot of people can empathize with that kind of feeling of rejection. Social media.
01:30:54
Speaker
the overarching feeling that I'm getting is that it's very much the case that something that I talk about a lot which is that people really don't understand autistic people and we really don't have the level of support that's needed for us to live happy and fulfilling lives if we're not given the opportunities to thrive it's never really going to happen
01:31:19
Speaker
and I know a lot of people who have, you know, gone on to benefits and gone to pimp and stuff because they can't deal with the intricacies and the discrimination in the workplace. They're often withdrawn from finding friends and relationships because of those negative experiences that we tend to have a lot of time.
01:31:46
Speaker
which is also related to understanding autism and I think there's a lot of different areas in life which I think you know can really affect us and it's you know it's disappointing that the systems aren't apt enough or not good enough to support individuals who may need it which is as I said it's pretty much non-existent past the age of 25
01:32:13
Speaker
Yeah, well, I'm not, I'm not, I'm not entitled to benefits. So I'm not, I'm not just, I'm not a lazy individual who just stays at home and sucks off the leeches off the government or whatever. I would like to work, I generally would like to work, but I'm not being given the opportunity to for a career.
01:32:36
Speaker
Yeah, I would say that there is a majority of people who don't do that. I think there's a minority of people who may have that kind of approach to things, but in terms of like the benefits and stuff, but, um, I'd hesitate to, to, I guess, generalize it to a lot of people, I guess. Um, just wanted to make sure, you know, I go, I go what you're saying. It's about it, you know,
01:33:03
Speaker
I mean, I think it's been really useful talking to your bedroom and hearing about your experiences in life from different aspects. And I think your story kind of highlights a lot of the things that I talk about a lot, which is those areas at which we're really kind of not supported in and we're kind of falling behind in things. So I really appreciate you coming on to speak to me about this.
01:33:33
Speaker
It's OK.
Closing Remarks and Listener Engagement
01:33:35
Speaker
I'm happy to be here and I'd just like to say thank you for this opportunity. Of course, of course. Well, if you have enjoyed this episode of the 4DRD podcast, make sure to give it a like if you're on YouTube or if you're on Spotify or any of the other podcasting streaming services. Make sure to give it a rating. Always really, really helps. Push these messages, push these podcasts out to people who may really, really need them.
01:34:03
Speaker
If you want to check out more of the stuff that I do, I do a lot of stuff over on Instagram. Do daily blogs, daily videos, and my YouTube channel if you're not listening to this on there. It has a lot of different separate clips from all of the podcasts that I do, so if you feel like the episodes are a bit too long and you want it kind of chunked up and to listen to specific areas and topics that we cover in the podcast, you can find those over on YouTube.
01:34:32
Speaker
Yeah, if you want to get in touch, very much do so through my email height at Thomas Henley UK for anything related to public speaking, to consulting, to my personal coaching, please, please head over onto that and send me an email. I'll give you some details about that.
01:34:53
Speaker
Or ideally, you know, go to the link tree that's always in the description. You'll be able to find everything, including the sponsor of the podcast, D-Buds, which really, really great, great things if you want to go check them out. They're like kind of these adjustable noise-cancing earbuds that you can use, kind of like Loop, just to be a little bit more.
01:35:16
Speaker
interesting in terms like you're adjusting the volume that you can listen to things on so definitely check those out if you are in the market for some nice earbuds and yeah so i guess one of the last things that i want to ask you pedra is have you enjoyed your 40 auto experience
01:35:34
Speaker
Yeah, as I was saying before, I really enjoyed all of this. I just love the opportunity to come on here and talk about my life and experiences with autism. It's just really to get myself out there. And so you have
01:35:53
Speaker
maybe another experience from someone of autism. And hopefully I've contributed something useful. But thank you for giving me this opportunity.
01:36:10
Speaker
You're very welcome. It's been really lovely to chat to you. And as I said, I think you've highlighted a lot of things that a lot of people would be able to relate to and a lot of issues that are currently facing a lot, a large majority of autistic people.
01:36:24
Speaker
so thank you very much for listening to this week's episode of the 40 or two podcast hope you've got something good from this let me know your thoughts in the comments or send me a message or contact me on instagram say if there's anything that you really resonated on this and i will see you next week in another episode of the 40 or two podcast see you later guys