 Good day and welcome back to the 4080 podcast with your host, Mr Thomas Henley, of course. How are you guys doing? A little update from me, as I did with the last couple. I am currently taking a long, long break from doing Instagram posts consistently. I've been doing it for the past, like, seven months or so. As you may know, I am currently going through quite a severe mental health period. Burnout, whatever you want to call it. So I think taking a break for me is kind of allowing me to take care of myself a little bit better, focus a little bit more on self-care. I've been trying to meditate, get on top of my food, nutrition, try and socialize a bit more, and it's generally been quite nice. So I am trying to, like, stop myself from getting back into work mode until I feel completely all fine, all good, which is very difficult for me, as you may know. But focusing a little bit on our podcast today, we're going to be talking about autism and visual disorders. Basically, I met my guest, Paul, alongside Olivia at Olivia's World. I went on that podcast to, I think, just talk generally about my experience with autism in a very kind of laid-back casual chat, as I say, very much like with these kind of podcasts. And yeah, so we're going to be talking about the different visual disorders that my guest, Paul, has, as well as their experience being nonverbal until the age of seven. We're going to talk about some of the difficulties that those visual disorders may come with, as well as what might be, what has been helpful during their day. I'm into my words today. And also, I guess what Paul would like people to understand more about visual disorders. So introducing my guest, Paul, how are you doing today? Yeah, I'm doing very well. Thank you. Yeah. Good. Good. It's the weather's been not the best over the past over the weekend. And not very much today, either. No, not really. No, not at all. But I like, as I said, prior to the recording, I do I do like to get out and do things regardless of what the weather is doing, unless it's hot, unless it's 40 degrees like last year, it was like a war. Yeah. But yeah. Yeah, I'm doing well. Thank you. Good. Good. Would you like to give everyone a little bit of introduction into who you are? Maybe a little bit about your kind of when you were diagnosed or when you found out that you were autistic? Yes. Yeah, I can give an introduction there. I was on 37 now. I was diagnosed on the autism spectrum autistic. Whether your preferences are, I know there are many and there are as many of grown since I've been been an advocate, words have certainly changed. Yes, I was diagnosed in 2010 at the age of 24. It was an assessment in Headington near Oxford. My parents were present to give developmental history, etc. He's a very kind man. He's called Mike Layton. He won't mind me plugging him. He lives in Bristol now, got a family to two kids, I believe. But yeah, he's a very kind, very empathic, very very sincere man. And I think that helped with the diagnostic process. He he viewed me as a as a human being as an individual, not just a thing that's sitting in a room. I've heard a few stories from other people have been diagnosed where they have felt like that. And one end of one friend springs to mind, which was not very nice. So that gives a load of connotations. Yeah, so I'm very thankful for for that in terms of the the overall experience and then building up from that. I started public speaking prior to my my formal diagnosis of training to speak publicly in 2009. And that went very well. We we've done about three or four sessions with it was with other people on the spectrum speaking about their experiences. It was a 10 minute speech. So I had to talk about my early life experiences very quick, very quick, very clipped. Yes, indeed. And then slowly what what what I realized the thing that initially was supposed to help me was not actually reading pieces of paper. These yes, was actually restricting me. And actually, as soon as I threw them away on one speech, I just it just flowed much better. And then what happened over the years from 2009 10 onwards, I was just able to build up experience. I worked at specialist school from 2010 to 2011 as a trainer, as an in-house trainer. I work for an organization for five years, doing training to various different places, you know, various different contexts. So it could be charities, it could be organizations, it could be GPs, you know, general practitioners to psychiatrists or psychologists to social workers, the context and the nuances of these experiences with different professionals and alongside that employment, I suppose, aided me with building up a repertoire of personal and professional experience. How I felt about the diagnosis was was aided really by my parents, one of the first things my mother said after we walked out, when I got the diagnosis, we're walking towards the car to go home. It was quite tiring. It was many hours of talking. Then was that I was still a human being regardless, which was very, very, very refreshing to me. And also what connects with that ethos and that idea of being a person, an individual, etc. was a lady called Donna Williams, who I saw speak in 2009. She's an Australian lady. She was diagnosed in the 60s with childhood psychosis. That's what they thought. Never heard of her. No, I know that the psychosis and schizophrenia was very much like. Like I know there's, I think, during the formation of Asperger's and Cano and things like that, there was also another lady who thought that autism was a form of childhood schizophrenia. Yes, the four S's. I don't know. I know a bit about that, what you're describing. Yes. And you're quite right. In the 40s and 50s, childhood schizophrenia, attachment disorder were interchangeably used, depending on the profession. Childhood psychosis is what they thought autism was in the 60s, but they were actually diagnosing it way into the late 80s. Yes, which surprised me. So Donna went for a two day assessment in a hospital when 65, mother and father thought she was deaf. It wasn't anything to do with deafness. It was to do with the language processing disorder. And that was the diagnosis, childhood psychosis. So it was it's dated, of course, but it also gives you an historical context of what they thought autism was in a particular period of time. And I connected with her on Facebook and a lot of her e-foss and the fruit salad analogy of autism I use. Sadly, she passed away in 2017 of cancer of metastatic cancer. She had breast cancer. Yeah, she had breast cancer and had a double mastectomy. But sadly, metastatic is like the you have like two, you have like benign and metastatic, which is like the metastatic is one where it like breaks off and goes around the body and like, yeah, different sights and yeah, that's correct. You've got the word correct. Yeah, that's exactly what happened to Donna. It went into her spine and liver. So she had liver failure, but she was a very positive lady. Well, well into the end, you know, she she found a husband, a partner while she was dying, which I've never heard of before. She she sorted out all his finances. She didn't want him to be alone. She even was part of a palliative care bill in Australia. So she went into a hospice to die and she died on her own terms, which is very brave. She wanted to die in her work, Chrissie's words of what she said. She wanted to die in her dreams. So she had what's called a driver, which I've seen with my own name. And yeah, she my close with my granddad, my grandmother was the same. Yeah, and it was it's bit sweet, really, in the case of Chris, obviously, this lovely lady he was losing. But nevertheless, there was an element of being a bit of a warrior, which she was very much real life and wanting some sort of autonomy with her death. And that's partly to do with having a very dysfunctional family set up. The mother mother was a sexual predator and pedophile. The father was the better of the two. He was more stable, but she she didn't have the sort of family background I had. So I can't imagine what it was like. She didn't gain functional speech until about 11 and being in that environment. She was really a trooper and I had great respect respect for her. And also, although what I've said is quite challenging to hear as she got older, things became better, you know, a sense of self worth, her self esteem. She's bisexual. So she originally had a few girlfriends and then married two husbands, not at the same time, Paul first and then Chris. And and she she was growing all the time and evolving her theories and her personhood. And I was very fortunate to know her and very fortunate for her to give me information and take me under her wing. So that gives you an idea of a bit about my background and. Things like that. Yeah, yeah, she sounds like a very sort of inspirational person. Like I don't really have many people like that in my life in terms of, I guess you could say in a sense like a role model. I think the closest that I have even even at the time would be like Dr. Megan Neff, which is someone that I talk talk about a lot from a neurodivergent insights. She's probably like one of the the one of the only people that I kind of look up to, I guess. And it's been really, really great for me to to know them and to like read their posts and to, you know, it's I got to be on the podcast recently, which was really, really cool. But what you said that there's the start about like the diagnosis process, like. Like 20, do you say 24? Yeah, yeah, well, 24 is quite, I guess. Old, I guess for for being diagnosed, I know that there's a lot of people who are diagnosed a lot later in life, but now I was diagnosed when I was 10 years old. I also know that like the the diagnosis process, as you said, like it's not always the cleanest, most easy process for a lot of people. There's often like a long waiting list and sometimes even when you go private you can be stuck with someone who has kind of a don't know how to say it, maybe maybe a monolithic kind of idea of what autism is and not really pick up on the new nuances of it and not not not give you the diagnosis, which I've heard quite a few times. And also, I relate quite a bit to your experience with public speaking because I when I got into it, I tried to start reading from like a script and stuff of what this would be like the best thing to do. Whereas obviously I had a lot of experience doing these podcasts and just talking kind of off the cuff, which actually I think works better for me, like yourself, like just having to look at the script and you lose your place in the lines and you have to go back and say, oh, sorry, like trying to find where you are again and then you look back up to make some eye contact with the audience and then you look back and you don't know where you are. It's not the most fun thing to do. No, it's not. And I relate to that. It was actually creating more hindrance in the end. Very similar to you. It was actually worsening. I was having to do almost like a freeway conversation, a conversation with the text, then a conversation with the memory of the text when I look up and then a conversation with the audience and that became far too much and there were lots of uncomfortable gaps. Not because I was embarrassed, because I was looking down at the piece of paper. So it became much more fluid once I was able to just retain information in a way. Obviously it worked for me of just speaking and having an idea of what I was about to speak about and then just go with that, which seemed to work much better, very quickly. Well, have you always been like, has public speaking always been your like role, I guess, with life in terms of like your job? Or have you had any other experiences with work? I think you mentioned on your podcast when we were chatting that you did some work in care. Yes. Yeah, this was purely by accident that I fell into public speaking. I was working at autism base as a volunteer. I wasn't working, paid work at the time. And all I saw an advertisement about looking for local individuals to speak for a short period of time about their life. So it was chance and luck. But prior to that, my first job, even before the care work, which was in 2008, I started working at the age of 15 in 2002. And there was a few reasons why my mother noticed that I was staying up in my room a lot. And studies have shown, isolation, they've done studies in extreme induced isolation, you know, with people in prisoners of war camps. And it takes around two minutes for neurochemistry to change, which is a shockingly short amount of time for the brain to actually be negatively affected by isolation. So if you take those two minutes and times it by how many hours you're just in seclusion, which I was, and I'm sure there is going to be a lot of people and I understand why they'll disagree with what my mum done, but you've got to take into account a few things. Firstly, her generation and different time, different time. Secondly, I wasn't diagnosed, although she was aware that there was something. So she made me work. And I'm sorry if that offends the audience, but what she done, it was out of desperation, from a parental point of view. I mean, I was crying doing, I was crying doing the application form, you know, she's saying, please do this, please go out and work. And I sent it off through the post and I got a suit and I had about a 10 minute interview at this supermarket and I got the job. But I got bullied in the first two weeks, which was a similar situation that happened when I first started secondary school. Yeah, sometimes it can be quite similar, the dynamics, you're kind of cooped up with people that you don't choose, like you just pot with people and you have to work with the environment that you have. Yeah, you're absolutely right. And I worked there for five years, I tried. I mean, I was trying in terms of I worked as a shelf stacker and then I worked as a baker. And then I worked on the deli contestant, and then I worked on the tails. This was all very hard. I can't deny it, particularly the tails. What's the social interaction? Yeah, I didn't understand it at all. I was very egocentric in conversation. There were significant delays between answering and listening, so the switching between the two. There are unintentionally funny things that I done because I misunderstood large chunks of direction. When I worked my first sort of time on the deli contestant, the line manager said, what you do is you cut meat and you cut cheese and you stand there. And I thought, okay, so five o'clock to seven, I was doing a late shift. So I cut the meat and I cut the cheese and I thought, okay, this is it, I suppose. And then these people were coming towards me and I was getting very angry with these people and I was getting very angry that they were asking me to change all what I'd put out. And it was quite clear in retrospect, there were huge gaps in my understanding of what was wanted of me to actually fulfill that role behind the deli. Yeah, beyond what they said about just stand about and cut cheese and meat. Yeah, and it happened on the bakery. I had this rule about, it was an internal rule, that I'd clean the ovens about an hour before my shift ended. And he said, no, no, no, you need to put some more demi baguettes. Demi baguettes are just half baguettes out. And I said, okay, and I fear for the people who ate those baguettes because they must have had a very chemically taste because I'd just put industrial, you know, in these big ovens. Wow, there was a big one and a smaller one that was used for cakes and stuff. Other unintentionally funny things, I suppose, if you were looking at it from the point of view as a comedy, I mean, it wasn't funny for me, but I do have a sort of self deprecating sense of humor. A man came in for a muffin and these muffins are pretty poor anyway. They just you just start to defrost them. There was no cooking involved or heating them up, etc. And I just got in the frozen one and I said, here you go. And he said, what's that? I said, it's a muffin. And he said, but it's hard. I said, yeah, you can wait for it to floor and then eat it. And I was shot by his reaction, you see, it's a two way problem. So I'm thinking I've got an idea of this muffin. And I said, you can have it. Don't break your teeth. Wait until it falls. Another situation happened more along the lines of what you're talking about with interaction, where a lady was gossiping and I didn't realise it was gossip about another member of staff. And she's talking about how he speaks too much and he goes on and on. And the gentleman in question came behind me. Of course, she shut up. She quietened down. And I said, oh, we've just been talking about you. Now you talk too much and you go on and on. And his reaction shot me because I thought that's something he wanted to know. It's quite clear something that's that's okay. That you know, it's not it's not really from my experience with autistic people. It's not really commonplace to like gossip like negatively about people. Or if we do, we tend to be a bit like tentative around saying anything too bad about people. Yeah, I didn't understand a few things about the word she was using. Firstly, I didn't understand it was gossip. So I didn't understand that this was information that he didn't need to know. And secondly, I thought it was information that he needed to know not because I was being horrible or rude. I thought someone else is saying this and I think you need to know. But it wasn't under the the guise of being nasty or tertial rude. I'm sure it came across as such. And I have no doubt it did look in it in retrospect because his reaction would suggest he's hurt. And I was bowled over by it. And I did ask him when he walked past the bakery, you know, why? Why is this? Why is this upset you? You know, earnestly, you know, why has this sharing, this information upset you? And he I suppose he was along the lines of saying, you know, this is something you. He wasn't saying exactly like this, but I'm paraphrasing slightly, but it he was more or less saying this is something you don't do. This is this is something you don't do exactly. And but I thought, well, when I'm up in that staff room for an hour, I'm hearing loads and loads of people saying at times some really quite interesting things about other people. Yeah. And then they're all smiles and having a having a nice conversation when they're outside of the context of the staff room, which was quite kind of a two face kind of approach to sort of group social interaction. I suppose so. Yes. Yeah. Yeah. And it just bowled me over. And it reminded me very much of school. In fact, I remember speaking to my parents at the tea table saying about that. But I also had a lot of vulnerabilities. I mean, I didn't understand I was being bullied until my parents told me they said, right, so what is your day doing? So what are you doing? What have you been doing today? And I would just go in a litany about, okay, I've done this, this, this and this and this. And then they would pick it apart. I said, hang on a minute. So that person said that to you. I said, yeah, they said that to me. I said, okay. And then so then what they'd have to do is take that part, contextualize it and say, okay, maybe you shouldn't talk to that person so much. Maybe you should, you know, just be civil to them, but just don't get into conversation with them. Yeah, don't share personal details or like. Yeah, exactly. Don't give them things, basically. So yeah. It's really good to kind of hear your experiences sort of in the working world kind of around that time because I never, I knew that that kind of environment would not be good for me. And so I never like went and went for it. And my parents also knew that it wouldn't be like a good thing for me. So, you know, my first job was kind of in special needs TAing, which like in comparison to what you're talking about is probably a lot better. But I can definitely see like little bits of like the type of behavior that that you saw sort of within different kind of places of where perhaps not to that degree. But yeah, I mean, I think it'd be really good to I guess talk about because I get a lot of questions from particularly from parents who come onto my live streams or send me messages asking like, when did you speak? When did you start becoming a verbal? You know, I really need to know because my child is like not not speaking and they're like four or five years old or something like that. And I remember you saying that you were kind of functionally nonverbal until the age of seven. I mean, what was that kind of experience like for you and knowing that I guess they didn't know when you didn't know that you're you're autistic? You know, how did your family kind of navigate around that? Yes, I think it goes back to similar although contextually very different ways in which my parents were very open minded. I mean, I was born in in 86. Part of my autism profile is brain injury. I mean, and I'm not saying that's for all. I just want to say that very quickly. Because I've had few people misunderstand what I'm saying. It's something that happened to me separate to the autism. Well, it kind of tempered my autism, but I'll go into that in a moment because it's a part of the brain that was impacted. So my mother had what was called a placental abruption. And it causes a condition called cerebral hypoxia. So cerebral hypoxia. So like lack of oxygen to your brain. That's it. And the placental abruption is you've got the membrane that protects the baby. And if it breaks, it causes hypoxia and it takes about two minutes and sales in the brain start to die. So I had a traumatic birth. I was a C-section baby. I was premature. So part of these autistic presentations were there. The brain injury was to the left hemisphere and probably the excitable lobes. The left hemisphere is receptive and expressive language. If you look at the function of the excitable lobes at the back of your brain, it's almost like... It's still vision. Absolutely. It's almost like your brain's eyes. So you've got sensory organs, but then you've got the perception and semantics. It's weird that it's at the back of the brain where the eyes are serviced away. I spoke to it. It's interesting. I did speak to a speech and language therapist and she says there are people who are born with what would be called parallel brain. So it's a brain that's actually the wrong way round. So the excitable lobes at the front and the front lobe is at the back, which I found very interesting. It would actually make more sense because actually then they're parallel. But nevertheless, I have that. So the left hemisphere affects the opposite side. So I'm hemiplegic as well, which is a sort of milder form of cerebral palsy. It affects my leg primarily, but also when I was younger it affected visual perception, body awareness. So it's almost like living in half a body. So language, visual perception, body perception. My parents in particular, my mother, realised there was something different around six months. Initially she thought I was deaf and blind and it was again, it was nothing to do with my sensory organs. It was to do with the how my brain was taking in these modulations or not. Even with autism, there's quite a lot of... I think that's one of the common misdiagnosis is when we're younger, the fact that we're deaf because one of the typical behaviours of autistic children is that we don't always respond to our name. Or we might go the opposite and if people address... If you're at school and people address generally the teacher comes across and says, okay kids, or okay group or something like that, then we just don't pick up that we're included in that. Absolutely. Yeah, it's a sort of egocentric reaction. It needs to be more directed at you or at least aware that the conversation is also about you. You're quite right there. So it was around six months and then she said as I got older, it became more apparent and I was her first child. I was a secret baby actually, she kept me secret. She still doesn't understand why but I was kind of this big reveal to my grandparents when they got so tall in the evening saying you've got a... and they don't get me wrong. They were brilliant grandparents. They were very loving but moving forward as I got older it became more obvious and there's a few reasons why my language was like it was and it goes into the visual perceptual aspect. So breaking down these visual perceptual aspects, there's two things going on. Firstly, there's a condition called somal agnosia. You can read about it. There's a syndrome called balance syndrome which I relate to apart from the optic ataxia, which is the movement of the eyes. I don't have that but somal agnosia I do have and Donna had it as well. This is why I connected with her more than just an advocate. There was shared experience and what it means is it's tunnel vision. So if I look at one thing in my visual field everything else is neglected. So you can see how that affected social perception. If I looked at a person they'd be in pieces, all fragmented, distorted. I could maybe see a nose or a pair of eyes or hair but if I would switch from the eyes to the nose I would lose the eyes and focus on the hair. If I switch to the face I could sort of focus on the face and the body or I could look at the room but lose the person or look at the person and lose the room. So somalt simultaneous visual sensory information I couldn't get. The other thing I have was somatic agnosia or visual associative so this is one of the reasons why my mum thought I was physically blind is because the way I was interacting with the environment was like a deafblind child. So I was licking, sniffing, tapping, rubbing my hands with my eyes and ears. So what I was doing was getting other sensory modulations to create a framework which I couldn't internalise visually so I don't have a visual memory. I'm the opposite of Temple. I know you spoke to her. That must have been very interesting. I'm the opposite so I don't have that strong visual pictorial framework and it's quite a common way of thinking. It equates for about between 60 and 80% of the human populist visual thinkers and that's trailing behind with word thinkers which is about 20%. So I'm more tactile kinesthetics so my world was tempered by touch. My mum has nice memories of me. I was a happy boy. I mean I don't want to paint out that I certainly wasn't. It's not true at all. I was happy partly because of their open mindedness. I mean she has a very fond memory of me because I didn't wear shoes because I needed the texture of the ground. Yeah being grounded literally and she can remember those moments out in the garden. That's quite like it's definitely like a sense that we've lost nowadays and obviously it's a lot to do with safety. You obviously don't want to tread on rocks or grass. No, not grass. Grass will be fine. Let's say it's an insect on it. An insect, yeah. But we're actually like it's actually quite important for us in terms of like sensing. We very much like blunt our input from like the ground and the earth and like a lot of people who are into like the whole kind of spirituality like meditation thing. They often like to take their shoes and socks off and like you know just go barefoot whenever they can and you know for me someone who has kind of difficulties with proprioception and vestibular you know balance and awareness of your body in space. I used to wear these things called skelly toes which are like an off brand version of Vibram five fingers which are basically just barefoot shoes. So like minimal padding just like but pretty much like similar to crocs I guess in a way. But I used to do everything in them and they were really kind of it's such a different feeling feeling like the pressure of the ground on your feet. Whereas you know nowadays we have a lot of shoes that are very heavily padded. You know they've got big heel lifts they're like you know there's so much sponge between you and the ground even even more so if you like like chunky shoes that it kind of makes you feel a little bit detached from your environment I think. Yes it does you're right and being with the earth I suppose and the way in which I interacted with the environment the physical environment people places etc means that the way in which I interacted was I suppose more sensory based because it was a trade-off if I can't see with meaning or I wasn't getting clarification through my eyes or the way my brain's interpreting this visual information then I'd find other ways to navigate and create compensatory ways of what is a tree what is a shoe what is a face is that mum is that father who is that. So I do all these things and of course it did have an impact on language because if I haven't got the pictorial referencing that's going to affect language association so yeah yeah because I imagine like because you know a lot of the ways that kind of humans learn and also you know particularly like youngsters little kids babies learn is by like association like your parents say some combination of sounds together and then they're like hold up like an object and they say like oh this is a rattle rattle rattle you know and they're holding it up and you have that kind of yeah see what it is and you know hopefully you mimic it and you say like whenever you see a rattle you go oh rattle you know yeah yeah I didn't have that not no no and I would wonder what it is unless it was being used or unless there was a way of yeah object of reference moving it about and making it come alive but when when things are dead when they're not moving I would easily wonder what they were or confuse them with other things so the other aspect is how language so I was about 80 percent meaning death when I was young so when I was in preschool all I all I saw was fragmented pieces of information all I heard was phonics so these fragmented things I'm trying to give you an idea of how it felt so these fragmented things were making sound phonics to one another so I didn't create the association with the image and the sound to create word what I was hearing was just pattern speak what I was seeing yes was visual patterns um I was very like it's a way to mean I don't know about this when you say that yeah like animal crossing like yes absolutely little animalese speak but they have to go yeah or like for older viewers and I used to watch reruns of these peanuts Charlie Brown when when they used to be in the the school he would do this trumpet sound it would be the adult speaking and yeah yeah the sort of you've never heard the adult which is I always liked that they'd done that because it was purely about the kids and all their there Charlie Brown was quite an endearing character he's a bit of a sulker a bit of a but he would always get there in the end he would he would always have his friends backing up I like it sounds like me as a kid well yeah I think it kind of sounds like me too maybe that's why we relate to it but nevertheless that is how I heard and saw this garnered quite serious attention from the head mistress who was at the preschool quite worrying attention she thought the reason why I was acting and behaving the way I was was some sort of abuse it was sort of subjectively kind of hinted at because she wanted an appointment with my mum outside of the preschool and my mum let her in and the first thing she said was oh you've got a nice sitting room and I said what what what do you think was meant by that you know what what and my mum's observation of that comment was it was a judgment I didn't expect yeah she expected to be yeah she was building up a framework of what this house would look like in connection with how I was behaving or she thought I was behaving at preschool but going back to the language thing it kind of makes sense you know the the condition you would call it is you hear it a lot in brain injury again you hear a lot of these words in brain injury um a phasier and all a phasier is is it affects the left hemisphere and you've got different types so I don't have a receptive and expressive one and probably the one that was most prominent was anomia anomia or anomia depending anomic a phasor is word finding so as I got older and my speech progressed a lot of it was dysfunctional in the sense that if I couldn't hear the frequencies and sound patterns of what others were doing that would actually echo back and actually have an impact on how I spoke so it's a feedback loop isn't it what I'm hearing is going to represent to what I'm saying I was echolalic for a longer period of time so my language was more patterned theme and feel rather than interpretive the perfect example you gave was of the rattle and also that's associative so the rattle um is is a baby's rattle um you're making a visual association that it's rattle and then you get its function its interpretive function we see things via function that functionality that's how like our brain interprets things as objects isn't it it's like yes you know what why do we see a chair as a chair and not like wheels with plastic coming off um and like a cushion and stuff like that it's because of its function right we sit on a chair that's it so it's so it's a chair that is just a whole thing yeah so now you can understand why I was context blind and meaning blind because all I saw I would either see a wheel or a cushion yes or a bit of wood that wouldn't be able to bring the gestalt together to make chair and that was the same with people so the language thing meant that you I didn't get the feedback receptively or expressively so the patterned theme and feel language was language that was a moted base but it was to do with my reality of the world so it was it was perceived as nonsense speak by others word salad but it wasn't it had a function it had an internal function for me you know lots of lots of squealing the squealing the high-pitched squealing would be happiness and the sort of downturned monotone grunts would be unhappiness lots of clicking for anxiety so I would click you know like that test fumping would be about dissociation and body disconnection so thumb in my chest I'm trying to trying to get back in you getting the feedback the the somatosensory feedback in order to feel kind of a bit more yes yeah you've got it and sculpting things would be a partly a communicatory thing as well until in my head I used to do that if I like people if I sense their energy and I like them and I wanted to be around them I may not have appeared like I wanted to be around them I may have appeared quite aloof at times but I did I did want to connect but I didn't have the facial expressions or the the clarity the visual clarity to connect in a way that which maybe they expected now my parents were very good with this because how I recognize them was was one piece of information so my father I used to sculpt his face so I knew that face was father and with my mother who I've adopted a curly hair I would I would feel her hair and I would know that was mother so by extension I was face blind as well so I wasn't just object blind or meaning blind I was face blind so you can kind of see how these things interplayed with one another the visual perception not only affected my learning my social perception but context and association and language because I didn't have that bridge with pictures meant that my language it kind of makes sense because that filter was a little bit like like a bottleneck there there was a sort of bottleneck there it made sense why my language was my own it was very egocentric I suppose language and even typically developing children will have egocentric language for a very long time I'm quite surprised I gotta teach kids to like share toys and yes yeah you do I remember going around a friend's house who had a little boy that still have it it's not past tense he's still with us he's about seven now and he was free and this is egocentric development fascinates me particularly toddlers because I like the way they think probably because I sometimes think similarly and yes and he's a love and it was really interesting why he got upset I could oddly relate to it Sam the father said to Jasper to be a good boy to be a good boy can you move those balloons now his reaction was actually really interesting so he started to well up and cry which I really felt for him is his lip was quivering and he said he pointed at himself and he said in earnest but I am a good boy and Sam didn't get it so Sam said again but to be a good boy can you can you move can you move those balloons and he went again he said but I am a good boy and I I sort of thought yeah he he's not making the link with the balloons and how that will somehow magically make him a good boy because actually he's oddly right I am a good boy how do you become a good boy if you're not already a good boy exactly and why would the balloons have any impact on me being a good boy so actually in an odd way semantically I thought this is actually quite an interesting discourse the adults trying to say do this and Jasper's reality is but why because I'm already that and it's I found that really just from a psychological and social point of view quite interesting that that'd be quite quite an interesting kind of point to just like linking with like pda like the pathological demand avoidance it's like the expectations is what causes the the difficulty with demands on on you like if you don't do the demand then you're you're not good and that you get a punishment or like you know you know this is those kind of associations that you get when people tell you to do things it's um yes I find it really interesting because I know that there's you know the majority of people who listen to this podcast they tend to be autistic I think oh I'm sure I think looking at your instagram I think you're pretty much on the money with that yes yeah but I I'm sure that there's going to be like a lot of people who aren't like parents kind of wanting to see what autism is kind of like an adulthood and you know from from talking to you and hearing about your experiences with difficulties with visual things and and being non-verbal like your ability to describe and kind of I guess give a picture of what your world is like is is very very detailed and very very well kind of constructed which I suppose it kind of goes in in some people's minds like against you know your early kind of childhood experiences in a way in in in terms of like how well you you speak um it's something that I experience a lot as well like you know how do you do these things how do you like socialize how do you like empathize with people when you know you struggle with cognitive empathy you struggle with elixify me you have communication difficulties social difficulties like why is this become something that you excel in like is is was there any like drive for you to want to want to do that was it kind of an emptiness because for me it was an emptiness of connection that kind of drew me to doing these kind of things yeah that's very interesting I think the first person I made friends with was myself I think that was it so when I was good and I said this on the previous podcast didn't I about my when I was functionally non-verbal my speech was more dysfunctional I was going out into the community and I would attempt to connect I would attempt with what language I had to try and connect with the older children they were somewhat older than me um and their gaps in knowledge meant that they would be withdrawal or they would I would be ignored or I would be um in it doesn't take a lot no it doesn't it just takes just takes like a slight delay and like the flow of conversation for people to kind of get awkward look around get distracted like yeah you're absolutely right and then it got quite viscous you know it wasn't just ignoring it was actually trying to wind me up or pushing me kicking me hitting me etc but as I said in the previous podcast um I'm I've laid bare all that and I'm actually I've internalized it to the point where I can talk about it don't get affected by it don't get triggered by it to humanize them because they may have had developmental challenges they could well have they may have had the kids yes yeah they have children so a lot of them are married you know and do have children so I had to kind of you know internalize that in a more structured and more balanced way um I think the the void there's an it isn't very powerful description the void of connection I suppose um I started realizing I was different around 16 which I've been told is late maybe that's thankfully so because obviously I'd gone through a large chunk of puberty by that point still had a long way to go but a large chunk of it had been passed me by so I think from that point of view things didn't always hurt me as much because I didn't always understand the significance of what they were saying I was so I was still meaning death so in some ways the meaning deafness protected me from the complications of interpretation but equally um as I was getting older and puberty set in emotions become more complicated neurochemicals start charging um I did because of Alexa Farmia related stuff which you talk about very well and that has about an 80 crossover with autism so it's huge there's a lot of people out there with it huge um was if I used to think emotions came from out there in right a very meta reality type thing yeah spiritual energies like yes people think of that as like an actual like way of understanding yes they do energy your energy is bad or like yeah the vibe is not good or like absolutely so emotions my own emotions were like something that would come into me like a wave like a tsunami of all this under processed or chunky pieces of information that weren't readily disseminated and then I'd hit myself and a lot of that hitting um was feeling about control the summit sensory amplification which is common in Alexa Farmer with or without autism somewhat sensory amplification is pre-existing sensory issues that get heightened because you don't know where they're coming from you don't know what angle so I used to slap my legs hit my arms and tense my temples which my mum used to get very panic by because obviously my face would go very very very very red and she would worry she would worry that I was gonna bust a blood vessel you know because you know it would you know when someone goes very very red and it's clear that had rush sometimes can be quite like a a nice yes like sensory experience like I used to sort of lie upside down on the sofa like with my head like completely upside down just so that I could feel that kind of pressure the rush kind of to my head yeah like it was very calming for me yeah there was you're right there was absolutely a function and at school we're going we're fast forward into teenagers um I used to confuse illness and emotion you know cross wiring so I used to go into reception a lot saying I've got a headache or a stomach ache and cry and it was nothing to do with a headache it was nothing to do with a stomach ache it was the nervous system reacting to how I was being treated and the only thing I could name it was stomach ache or headache and it was interchangeable either I'd have one or the other I'd have both and it was really unprofessional this got round to teachers and two teachers actually um really unprofessionally belittled me in front of my class saying one of them said it was a science teacher he said pull the boys always crying in reception go and get that flask this was a science teacher preparing for an experiment and he said that in front of 30 students and another teacher done it p teacher says you're always crying in reception I used to think how do you know and of course what happened is sadly gossiping gossiping and it was completely unprofessional but I understand it's a workplace that you know school is for the staff it's you think of teachers and parents like up to a certain age where you kind of have the realization you think of authority figures teachers parents is like these somewhat godlike people that they just don't exist in the same like realm as you would like they're just these kind of alien creatures that just um yeah you know they've turned 21 18 25 whatever and they've suddenly had a switch in their brain and now they're like adults they're like no of all kind of well functioning and everybody's like that and nobody cannot be like that and yes it's really weird when you come across that that kind of realization but um I know that you were saying about like a lexifier and like understanding emotions because I used to go home a lot at school and I think it was probably due to anxiety that I used to get so sick and I used to get the headaches as you said but I used to basically describe my emotions in terms of like a positive or negative like I couldn't really put my finger on exactly what was happening but I knew that I was feeling good I knew that I was feeling bad and there wasn't really any like description between them um and also you know I experienced a lot of bullying at school a lot of kind of remongering harassment whatever you want to call it um and I didn't I think it did affect me but I wasn't really like I didn't really feel when when things happened like if someone was you know told me something that I hadn't told them I was like how did how did they know it was kind of like this sense of lack of control but not really understanding like how this came about um and I think it's a lot to do with you know being a lexifier you know you don't always attach your feelings to the events that happen around you the ways that people interact with you and so it's a bit hard to characterize when to put your guard up when to like be vulnerable with people when to tell what to tell people um you know um and that that that was really really difficult for me and I've had a lot of situations where really bad things have happened to me but I haven't necessarily um like connected how I was feeling at the time it was only kind of in hindsight when I look back when I was like oh you know actually this is causing me a lot of anxiety and this is why my stomach hurts and like um it took it was it took a very long time for me to come across the realization that that and I came up with lots of different crazy theories about why I was this way like am I psychopathic am I you know do I do I lack like a certain air of my brain am I just a different human um you know are these antidepressants making me like this you know there there was so many things that were kind of blizzing around in my head to try and explain why life just felt like this mash of emotions sensory like social mess like constantly it was very difficult to navigate yeah yeah let's find me in itself is is is difficult to um navigate and I suppose with the emotions not being in real time meant that even if your body was um reacting reacting your connections with that um somatic experience anxiety whatever um wasn't in tune or happening in real time so it's not happening in in real time despite events happening in real time which means that there's this constant lagging and delay and the constant lagging and delay means that you are not giving connected answers you're not giving connected responses you're not giving um uh you you might feel like you're um on the outside looking in or you might feel slightly detached from situation association just constant depersonalization the realization is is very much like I was just heavily kind of sedated like the entire time that I was at school yes that's your nervous system protecting itself from any harm or or or what what is perceived harm perceived threat and yeah you're quite right and with exposure anxiety which is similar to pda uh donor coin this is when your nervous system negatively reacts to self anybody making you aware of you the person so it's not demands it's just you it could be someone saying hello to you or it could be as simple as that and one of the breaking you out of that dissociative kind of yeah and you want you want to go back in fact when I did gain functional speech between the ages of seven or eight in year four um and it was functionally of a three-year-old I wanted to go back because obviously this idea now is is that people are making you aware of yourself and I was becoming more aware of this and so I would dissociate um from that although I was also dissociating probably just as much really from language because the bandwidth of meaning I couldn't get so when I was in the classroom one of the things I would do is is dissociate and donna hypothesize that some autistic people with high levels of information processing challenges like language processing or visual perception may more likely dissociate because they're not getting the incoming information in time which then means that if they're not getting the incoming information in time they've got their nervous system has got to do something um and I suppose mine was quite subtle I wasn't smashing or hitting I was just sitting there and just going so it appeared maybe like I was in tune or or actually getting on or on some sort of superficial level anyway but no I was uh uh dissociating uh quite a lot at school and predominantly very very internal facing myself like yes I know there's a lot of autistic people who have like meltdowns where they can be quite angry towards people and like aggressive I was never like that I was like very internal facing you know if I was aggressive it was always to myself like like with the hitting and you know things like that and um very heavily dissociating and it was it's a very strange place to be in like and then kind of coming out in adulthood and feeling I guess feeling okay with like grounding myself like the anxiety um I mean there's a lot of reasons why the anxiety suggestions like in in helping me with panic attacks and things like that I didn't work you know obviously identifying that you're anxious is quite hard when you're elixir pymic in the first place to actually incorporate those but the actual grounding made me feel worse like because it took me out of this dissociated state where I was like I'm actually like being in the moment listening to things identifying things like talking to people um very much in the moment and it was it was very difficult like it just made my anxiety a lot worse yeah I I tune out a lot and I did more so when I was younger and one of the reasons a hypothesis again by Donna it's a great book called the system of sense in the unlost instinct which is her hypothesis being when a human being is born they merge with objects and people because they are not using interpretive frameworks they come later so if someone is still in the system of sensing not in the system of interpretation where you're getting applied interpretation and cladding and hierarchy and all those other things um that would mean that um a lot of the time the tuning out that I was doing was emergence and it could I could merge with a bottle I could merge with an orange I could merge with colors and what would happen is the emergence would be so deep is that self an object would become one and self an object becoming one is partly nice for me but dangerous if someone tries to take me out of that feeling and Donna would hit herself she's she she was quite a pike and transparent you know it was this feeling it's very yeah it's very strange you you're saying about this because it like it's you know I recently did a podcast with um Emily Robin Clark and we were talking about autism and spirituality and like you know the the idea of meditation is that you kind of you know the the idea is you want to become one with the universe and not really have like a sense of ego and you want to be detached and like yes it sounds it sounds exactly like the opposite of what you have to do to become like an adult like yeah what you're saying about like you know how you interpret the world and stuff it's like people I started out a bit yeah into it with meditation you're quite right because what I do my conscious mind I have to use as a way of keeping me on track so if I'm walking into a supermarket I have to know if I'm in a good mood I my my I look at things like you know jewelry or colors or someone's buckle on their shoe or someone's hair or someone's pattern on their their coat and I want to touch it and I want to experience it and I want to merge with it but I have to keep saying to myself don't don't do it don't do that don't do you you're you're here so what I have to remind by mind all the time is the interpretive thread of why I'm here why I'm in this supermarket and what I'm getting why I'm traveling on the train why I'm going on the underground because all the colored tiles make me feel really good so now I want to just look at them and I think no don't look at those tiles don't look at those lines please don't don't and it's quite a negative dialogue I mean that's what my counselor said that sounds very negative pool and I suppose it is but it's it's self-preservation because if I start staring at these lovely things that I like it's going to garner attention and attention that could be quite it could lead to things happening and I suppose it is a part of me self-preserving um but yeah I I so I detach easily if I'm overthinking there's usually a good reason but I'm not naturally an overthinker and mum's laughing because she's saying she's laughing because she disagrees but the only time that I I express overthinking and mum's listening now is me and mum share obsessive compulsive disorders so if the overthinking usually comes from an obsessive compulsive nature rather than an analytical one does that sort of make sense yeah I mean it's like I definitely like I've always been a very internal person like I do think like constantly my my default mode network is pretty like crazy all over the place kind of but I think that's mostly because of my anxiety disorder yes my depression it's kind of you know the way that I've coped with life and things is by over analyzing things to such a degree that I am aware of all possible outcomes so is it a bit like analysis paralysis you're you're looking you're looking for the sequence and do you almost feel metaphorically paralyzed because there's too many variables does that make sense yeah um I think it's it's less so like that in adulthood and it's more um like it's more of kind of an introspective thing so I'll you know a lot of the things that I do or say that I'm going to do there is always a counter kind of like sort of like I'm having a debate in my own head about everything right it's not necessarily about events or people it could just be like like the way that I process and do things that kind of come naturally you know using kind of your your idea of like the monkey brain versus your higher kind of cognitive yes brain I use my higher cognitive brain for a lot of things um which often leads to me getting quite burnt out over very very little um it really does impact my like executive functioning quite a lot that's interesting because I'm the opposite I go with feeling which people get surprised by because it's probably challenging a stereotype yeah yeah it's not very autistic no no I go with feeling and I can be I can apply analysis of course I can because I wouldn't be of course I think I have to point that out because I can't just say that and then you look at my blogs and you think well there is some analysis going on there of course there is but the way I am in terms of when I'm not writing yes my brain switches off if I sit down that sounds blissful I can I fall asleep a lot and I've told Olivia this I can fall asleep very quickly and very easily because I just I'm just in the moment so maybe maybe you are like this kind of you're naturally this kind of guru spiritual leader who just exists in this meditative in the moment space like yeah when I'm not thinking in the moment there's a problem so that's good so so it could be OCD it could be PTSD it could be sometimes I get what's called a musically a syndrome which is an offshoot of having language processing disorder which is a near worm but times 100 oh I get I get them I get them like on specific like like five second segments of the song just over and over again in my head I've never heard of like a descriptive word of that it's musically a syndrome so it's a form of auditory hallucination and I've had them and it's partly to do with being a phasic so I have an ear I have an iPod in my head which can be quite relaxing so you can see why I'm not always consciously cognitively driven because it's a lot of pattern rather than cognition so the only time it can be distressing is if a certain clip or a certain sound bite as you as you phrased it it becomes quite oppressive so I made the mistake of listening to a horror theme and I like horror films called the burning and it's a very droney very melancholic theme and it got stuck and I was actually getting rather worried because it was just this plain plain it's quite a depressing score because it's a horror film it's a slash film and my parents knew I was getting anxious my mum's just coming through she said I can tell there's something wrong because I was frowning I said it's this music in my head I'm a bit concerned about because there's no it's not coming away it's not being replaced by something else and I think I had it for about 48 hours and yeah it eventually when it kind of dissipates like it's getting echoey and then something else replaces it but yes that's that's called that's called musical ear syndrome it's common I need to definitely have a look into that I've got a yeah yeah it's a real thing um it's it happens for people with partial deafness so they're partially deaf but they're hearing still hearing it's a paradox but you can also have it if you have processing issues there's a visual perceptual version of that for people who are blind but they they get um visual hallucinations I forget what it's called but there's a there's a visual version of that but yeah it's like a living iPod in my head yeah yeah but it's only these five second clips and it's often not like sometimes it's a nice clip but like it's not it's it's it tends to be like like a really emotive part of it that I don't actually like that much that just kind of gets stuck in my head and the way that I can really quell it is by listening to music constantly yes that's what I had to do with this one I had to drown it out to listen to the actual song over and over again and just kind of get your brain yep hey up just popping on to say thank you for listening to this podcast this far 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 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 canceling noise reducing earbuds that you can adjust the volume on really really great thing they're called debuts and you can find the affiliate link down in the description of this podcast for a 15% off discount anyway I hope you enjoy the rest of the podcast that's all from me I know that we've talked a lot about like the difficulties of kind of having visual disorder and lots of different kind of processing differences and perhaps a little bit about um sort of autism in the context of like the workplace things like that at school I'm just wondering like what would or what has been and what would be kind of helpful to someone like like like you like how did you kind of turn things around and start to I guess understand the world interpret the worlds better get to a point where you can like public speak and you can have like conversations with people what changed like in order for that to happen yeah I was but yeah I would say what what changed was um I got to a point uh 24 prior to that I had gone through mental health services pre diagnosis um I had a nervous breakdown at around the age of 21 um so I went through um I don't mental health services for quite quite a period of time I think it was six months plus if I remember um so I got diagnosed with um two personality disorders borderline and schizotypal um I had psychosis for about half a year and that was auditory um hallucinations not the ones and those things that that have been removed since getting an autism diagnosis so do they do the standards uh oh I was poorly and I did have personality disorders but you can have both um that makes it very complicated because I um as you can imagine it's a lot of misdiagnosis like with those kind of borderline b bpd is the same uh bipolar schizophrenia like they're quite common misdiagnosis they can be and it's important to say that um and it's equally important to say you can have both which actually makes things rather complicated but what it also does is also suggests that autism isn't linear so borderline personality disorder you know not having a strong sense of self is common which I I didn't have um cutting I was cutting um and suicidality and suicidal ideation were were um were apparent and attempted suicidal so so it was quite dark oh that's that's that's quite all right I mean I it was a very difficult period um the turnaround was obviously many years after that in 2010 when I got diagnosed on on the spectrum and actually the dual diagnosis of that and obsessive compulsive disorder is the way in which I I suppose tried to make myself better for one of a simplified term or to elevate myself was to actually um it's something I said earlier about being friends with with yourself because I feel that that idea of um constant need for existential checking existential adornment existential validation is so negative and I'm not like that anyway I'm naturally solitary um I'm very much a people watcher my personality type is very much there in that sense asexual to some degree asocial I'm quite indifferent praise and blame I think that goes that that goes probably with the territory territory of why people think I'm relaxed um so and I'm quite happy being a people watcher I don't I I'm okay so if I was at party you know I could quite happily just watch and observe watch yeah listen to the conversation yeah absolutely I just to me that's that that would still be a good time um but the internal validation the internal sense of self-worth the internal sense of being happy with where I am was probably why I'm in a better frame of mine now because it's not looking for something out there which is a common mistake a lot of people do and it's completely something that I'm trying to to work for at the moment it's it's very much the case that you know I think it's a lot to do about negative experiences as well as people with people you know we have such a negative bias in how we experience people and the world almost to a point where it becomes like too much and you kind of seclude into yourself and when you want to kind of go out there and make friends and improve yourself and connect with people there is always that inherent like need to to know if like things are going well if your friends with people like I need like direct affirmation like you're my good friend or like you're my friend or I like you or else I just don't like assume that um it's it's very difficult because it is you know as you said I I'm similar I'm I'm quite a solitary person I like to do my own thing like to be by myself but also at the same time it's like I'm constantly like looking for um that kind of external validation in terms of you know I'm doing well and you know I'm working hard or like you know I still do it I still like go and do things but it's always that kind of need in the back of my head to know that I'm being valued or like you know I know I think that's also somewhat to do with being depressed you know very much like yes internal validation of yourself your internal kind of self-esteem the the way that you think of yourself tends to be quite clouded with negative thoughts um and even to the to the point where I think there's you know the other aspects of you know being or being autistic sometimes with Alexa Fimea and sometimes with those social differences um we can often kind of go for a rabbit hole of like oh am I am I being narcissistic am I am I being um you know particularly like too too emotional seeking of validation like I don't I don't want to be a psychopath because you know that's a bad thing but I also feel very disconnected from my emotions and there's all those kind of things that they're into play to make like connection validation and and things like that very very difficult um and humans you know one of the the ways that we do validate ourselves um and feel good about ourselves is through social connection because when you share things about your life with another person how you feel what you're thinking about um you are in in in some sense you are looking for some kind of unless you're doing something like this where you're just kind of explaining your experiences and stuff um you are sometimes a lot of the time looking for that validation that's why sometimes isolation can make like depressive thoughts somewhat a lot bit more difficult um oh yeah amplification of um negative internal thoughts or self-perception um it's it's it's a slippery slope and I suppose with mood disorders or or mood impacting mental health conditions maybe that's a better terminology um it certainly has an impact on um your ability to seek an internal want to be valued so that could be through um looking for friends or acquaintances or potential partners yeah or it could be the fact that when you're on your own and certain personality types do not equipped very well being on their own um my late nan hated being on her own absolutely hated it hated it really irked her you know being within her own thoughts whereas being on my own for me is actually quite nice um and people get quite surprised oh you like being on your own and yeah I do I do like my own company because the first fret this is my view it's just a view and I'm up for debate and disagreement absolutely is that the first friend you should make on this earth is yourself you're gonna be in this I joke I say you're gonna be in this flesh cage for X amount of time yeah you're at least into released finally from my eternal cage when I turn to part yourself yes so you may as well make friends with it you may as well get used to it you may as well because I think that's the one body part if we're looking at the human the body the your own um that we forget to look after emotionally um so that is why it's not a narcissistic thing it may be a slightly egocentric thing but egocentric behavior is not narcissism obviously gets misunderstood and I've got a lot of friends on the spectrum who continue to be egocentric and it's about education of why that is rather than you know slamming them with judgment or or um saying you know that they're they're inherently selfish because it's actually not the case if you actually break down why they're doing it and I think that most people are like yes that some of the people who like are the most kind of outward facing people pleasing kind of individuals they almost always tend to be neurodivergent like but the thing is I think it's just that we don't hide it like we don't we don't fake that we're not like we're not like selfishly driven in some ways like you know quite often you know I don't know like my parents will say like oh you need to show an interest in what someone's talking about and it's like but I'm not interested in what what they're talking about like or you know that those those kind of things that that you kind of put on for social politeness and social nicety they those are just masking your inherent kind of selfishness but because we don't like doing that kind of thing then sometimes our selfishness is a bit more apparent I think yes you're I suppose you're right if if you're being quite avert about what you do and don't like it can it can sort of create a social difficulty I suppose with okay so you don't like that or you could get into a cycle of reactive discussions where people are getting reactive with one another it might snowball into a potential argument or yeah yeah it's it's a difficult one because some people try to understand self through other and other through through self and the other through self is they may have a dialogue about themselves to try and relate to you and along the way it may actually get misunderstood as being like look at me instead of you like this yeah it's like a whole thing like someone says that they're depressed and they're having a hard time and the other person says like oh yeah I had a period of depression back then it felt like this this and this and this is what happened and like it's not an attempt to shift the conversation towards you it's like an attempt at like relating to the to the person yes yeah I was having a conversation with one of my autistic friends I went to go see like the um Barbie movie on the weekend and um we're actually talking about it and it's it like for me watching kind of neurotypicals or talking to most neurotypicals about things it's very much like their personality exists in like um association with the people that are around them like it's a very emotional kind of based reaction thing um whereas with with autistic people it's kind of like we're the same person in every single scenario and sometimes that scenario is good for us and sometimes it isn't and we don't necessarily react to the like the flow or the feeling of the conversation or anything like that we just approach things from like a very hyper individual perspective like and so it's a very very interesting to kind of think about that because it is you know even when I was younger it was like you know watch watching neurotypicals converse and talk to each other it's it's almost like they're kind of just driven by this this this kind of social emotional force this this weird kind of ritualistic behavior that doesn't or reactive behavior that doesn't necessarily like come from any prior thought or any meaning or like you know it's it's very much very strange for me like looking at one of the reasons why I felt very alien when I was younger because for me it was like you know I'd think about things before I do them rather than kind of just react and say things and do things based on what it feels like I should do I guess yeah I think I can understand what you mean um I think when I was younger it was very much about the the funnelling of the different components which I described earlier and attempting to communicate with the frequency which I had but not always getting the the response simply because it it was a patterned type language which meant that it wasn't the bridge to cross to accommodate me was not there but like I said it kind of dovetails into what you're saying about the person I am now um the way and I briefly mentioned it anyway the way in which I internalize the past is probably a large chunk of why I'm like I am now because it's about letting go um or reconfiguring it in your mind and putting it in a more objective space so that I'm able to function and not be bitter and not be jealous and not be consumed by certain emotions yeah I mean all emotions are relative even the ones I've just said jealousy bitterness they're all feelings that human beings can get for a variety of of different reasons but I just choose not to go down that path because it will make it will lead you up and it will make you extremely lonely because if you're constantly um uh like embittered and jealous that means you're the comparisons you keep making with other people and saying oh oh they're doing this or they're doing that rather than embracing people that you are connected with meaningfully um their achievements you know big um big or small um I think I think it's also like for me like going through that process myself it was also about like separating out um actions from intention as well yes just thinking about my experience in in times where I perhaps not haven't behaved the best way or communicated the best way you know I was like okay well I was intending this but it came across as this and like just just being aware of the fact that fact was very helpful with like processing things and I feel like a lot of autistic people we we go through the school system we go through the workplace we go through a society with this very heavy negative bias of people you know you you see a lot of people within the autistic community who have a very very negative regard for neuro-typical individuals which is founded like it makes sense but we do develop a lot of self-defensive mechanisms we learn from other people how to communicate with them to keep ourselves safe um we have very negative views of people which help us not get too excited or expect too much out of interactions you know they're all very protective things but they they also hold us back from really connecting with people which you know going through understanding my past was almost like mandatory for me like being able to connect with other people in adulthood yeah I think one of the things that um with non-autistic realities what helped me understand do you know rather than being generalist about this is you know there is more than there is more than one way to be non-autistic just like there is more than one way to be autistic and that actually opens up a whole potential idea that actually everyone is an individual everyone is going through their own stuff everyone is in in different environments which will tend to that it's a bit of a mess yeah there's yeah it's uh and everyone's going through uh because of their environments different things so we I could talk to someone who's non-autistic and they could relate to a part of my autism which is fine that's perfectly um reasonable and it certainly it can happen I remember speaking to an ex-staff member who who wasn't on the spectrum but she was face blind like me and we just had this nice chat about how her face blindness had an impact on her and like the indirect communication like yes and it was quite interesting and I just felt okay but that just shows to me and Donna was very much of the same ilt that if we are going to talk about non-autistic it's let's not create further burn bridges yeah we don't we don't want to like because they are the key to us getting what we need like the other majority like we need them I I suppose yeah you could look it like that indeed um it seems that I I suppose I'm looking it from an egalitarian point of view where you you have a lot of separation and some separation of things is very man-made so you know these these separations of peoples these separations of race there's only really one race as Jane Elliott says she's an anti-racism um teacher and educator and it's human race we've had it drummed into us that there's four races and that there isn't there's just one race and I think what what we have to be very careful with with labels in non-autistic description if you want to describe someone as non-autistic don't make it don't make it I'm trying to find the word if you start giving it negative connotations like them and us all the time you run the risk of someone non-autistic people being very worried about what they can and can't say and because I've been in the advocacy common thing yeah and because I've been in the advocacy movement for 13 years I've seen very militant autistic people in in a very privileged position such as advocacy or um or the which is fine I can understand like you why they probably got to the point where they have mental health wise but if you start being rude and I mean generally genuinely rude to people people down you then create this inability to kind of um you know debate disagree offer a different perspective learn from someone's experience um and that's words can get in the way as much as they can matter so you can have words that people don't like like high and low functioning etc severe and mild and things like this but equally I can have a conversation with someone who uses those words and not get reactive because it's their their their choice to use those words I know people don't like them and they may have a very good reason for using them which I will try and understand um so what I am all for is is even within the community um and this is probably why it goes back to what you're saying about how um I've I've aided my own self-esteem is is to become a bit more autonomous to become a bit more self-directing to become um not to the point of denying other people's reality so that so in other words what I'm saying is even through the lens of maybe disagreement and not liking certain words we can still have a dialogue potentially I'm willing to yeah the only rule I have is don't be rude and I mean genuinely rude and that is it if you can if we can just that's the only rule you can be firm with me you can certainly be be blunt if you if you feel you need to or if that is your style of communication I don't mind that uh yeah let's learn from other people even people we don't agree with we can learn from even people where we don't fully understand their reality can still learn from um and I suppose that's partly because I've worked in with people who you don't see and I'm going to be quite frank the people who are functionally non-verbal the people who smear the people who yeah they don't they don't have the voice exactly and I've worked with these people and I can tell you now they're the same the nicest people I've met that some of these people are very distressed and I and I don't mean mean this in a facetious way or a condescending way they humble me because what what what you learn from these people very quickly is um you have to take you out the equation and the focus has to be on them and their reality and that is very humbling in those in those experiences and I'm thinking of at least three gentlemen I've worked with um all the varying degrees of functional language but beautifully um connecting people very cheeky you know I I humanize these these people this is what I agree with you about humanizing it's it's so it's so refreshing even with people who present as I've described that one of the things that made me connect with all three of these gentlemen is because I saw them as people because I saw them as equal to me because I allowed them to be it's what a friend of mine um Sumita Munjanda who's on the spectrum she's an artist a poet and a writer and she's talked about this thing permission to be like the permission to be and I'll remember I'll give you a lovely example I may as well I used to work with a chat with fragile ex called Jonathan yeah that's quite a crossover with autism yes stuff yes I remember her mum he had mum his mum I do apologize John it's you're about your mother uh I remember having a conversation with her and she challenged um the diagnostician good on her because um he felt that he couldn't have both and she says well I I'm I want to challenge that I do believe that he has both but that was a very interesting dialogue but nevertheless with John um what what I done with him is is presumed competence you know I read a lot a lot of stuff about fragile ex and it's quite negative I'm gonna be quite frank you know low IQ mental retardation things like this you know um very very cold analytical descriptions where the person is is not really seen of well I've had enough of reading this um I just want to meet John where he is and I remember and he loves you know we're talking about Snoopy and peanuts he loved Snoopy and he loved peanuts and he loved Charlie Brown he actually related to Charlie Brown very much and he's printing he likes printing out pictures of different emotions very clever he would use pictures to convey how he is um and I said to him you know what John I said you're really intelligent and he took his fingers out from behind he says the reason why they used to be behind rather than on um he had some people fragile ex have a narrowing of the tubes because of cranial differences he had a lot of ear infections and he's partially deaf and I'm just giving you a bit of information about why the thing is behind the reason why the thing is behind the ear is you've got a honeycomb um piece of soft bone behind your ears and it's he's massaging it because it's very tight and he would also do this as well and press here which is all think it's communication he's telling you he's poorly and he took his fingers from behind his ears and he turned to me and he said yes I know and had this wonderful smile and from there on in because that had been communicated a lot of his speech speech was was very much pattern theme and feel but he said that to me yes I know like this in a very sing song way and I thought right okay we're going to build up a friendship and that's what we done what what was built from there on in over the months and years of working with him was a very nice relationship where you know he liked word play um he liked me using words from his favorite cartoons it would usually get a giggle out of him and we would talk you know in in it may not be the interpretive way that other people talk but I'm meeting him where he is and he's very tapped of like a gentle giant you know would and and and this is all about acceptance right if if he wasn't going to get this this day sent so you know it'd be quite odd I would feel and it was respecting him as a person and his meltdowns could be quite extreme you know I had hair pulling he would pinch you but the one thing I never done which he didn't deserve by the way and I think he probably got it when he was younger was judgment you know soon as he pulled someone's hair or pinched them up we're not going to go near him again but what I always done is I thought right why did he pinch um you know the one reason actually the reason my pinch me and it is quite hard as well it may but because I'm disconnecting my body a bit actually um it was actually Claire who had to intervene it was really interesting so he was like going like this like round my my stomach and she's going oh Paul I thought oh okay and and then it was all to do with the computer wasn't on but he didn't have the language to say I'm really upset I can't get this computer on so you have to again look it from the other person person's reality what is their reality and I always found with him after I made that connection with him you're never quite the same with the people who present as such again because when you've made that connection that meaningful connection not just some superficial thing um you've garnered trust which I think is the baseline for any human being you've got to have trust haven't you you're not going to go anywhere and um yeah just um uh not being fearful of him when he has these these meltdowns and a lot of the time after he melted down he cried anyway and he actually needed a lot he's a very emotionally sensitive man so he actually needed a lot of TLC after a meltdown but lots of crying lots of um you know um he would like you to rub his back and show empathy yeah so hopefully I know that's a long tangent but hopefully it gives you an idea of the people I have worked with hopefully it gives parents who may have people you know sons and daughters with fragile x or people who present similar to the uh john you know that if they are going to be in the right place with the right staff um you know it can be a very happy a meaningful experience for them that it's a human it's a human necessity isn't it it shouldn't be seen as a choice you should be in places where you're you're being treated as a as an equal valid person yeah and I think just just transferring I guess what you said to lay the perception of neurotypical individuals you know um I've met a lot of autistic people who I don't particularly like yes so far I've met a lot of neurotypicals that I don't particularly like yeah sure there is there does tend to be that miscommunication barrier which can put a put some somewhat of a barrier to connecting with neurotypical individuals but you know my mom's neurotypical um I've dated neurotypical individuals I have friends who are neurotypical you know um it's it's very much you know personality is definitely like a really big factor in that and I've had a lot of people who have you know whenever I've been talking about you know dating and trying to give some resources for neurotypicals to understand or it's a bit better to get on with us better um there's been some autistic people who have been like oh no we just need to find another autistic person or like you know it's not it's not a good mix for us to be with a neurotypical person it's like it there are some challenges to it but there are also challenges to autistic autistic relationships and it's not as black and white as you know people would think um so I really like that that idea and I can imagine that you know in in your case kind of processing information from the past in that way is being very helpful for you um it also has been you know very very helpful for me as well like in terms of understanding myself feeling a bit better about myself understanding people forgiveness you know all of that thing is very very important for forgiveness isn't forgiveness is powerful because it's not expecting them to say I'm sorry I think that's when we get it's it's about you it's a personal thing it's a personal internal thing it's not literally them coming up to and saying anger is not fun it's not being angry affects you yes yeah I've I've met um people who are in that sphere still where if I bring up school it's too triggering or they're not they're in the weeds of the metaphorical weeds of trying to get get the weeds out so they're within the weeds of the garden and they they may not have the tools to get rid of them yet or they just simply aren't there yet emotionally to actually um actually deal with it and that's not me being judgmental I was there you know if I go back 10 13 years I was totally yeah very great victim mindset for a lot of my my time on the surf yeah victimhood's an interesting one isn't it I what why I don't know if it's similar for you but the way I've dissented and filtered that is I was victimized but I wasn't I choose not to be a victim so I was victimized but I don't filter that into my identity and that was a real I don't think I ever felt like one really I felt upset about the world but I never felt the world was completely giving me a hard time I would have moments of thinking that but it wouldn't be like my whole life but like it wouldn't go on for days or weeks but I would have moments of of of sale pity and I think there are healthy amounts of sale pity I do believe you have empathy as well if you feel different ways slightly better way and it's as different it's a slightly different mindset because you're actually acknowledging the pain rather than um you know completely developing you um but yeah but luckily the counselor I've been with recently has been very good at explaining things in a way that's um I suppose quite tangible and understandable but yes um well it sounds to me like you've come to a similar place in your life where you're you're you're building up rather than being stagnant which is a horrible place to be um yeah you're pulled back by your past and your past experiences it's it's not a good place to be in but um I guess trying to to get us back on track in terms of like the questions I mean one last thing that I would like to ask and I'm kind of looking for something kind of a bit more short some kind of like practical like lessons that people can kind of take away from our talk um what kind of what things do you wish that people understood more about socializing communicating with people with visual disorders like what would be your suggestion I would say that um we've got to the first thing is that we've got to understand the firstly that they exist I know that sounds really obvious um but but just a firstly just a basic reality that these visual perceptual challenges exist in the context of autism the second thing the practical aspect is if someone is a non-visual thinker you know you you have to try and if you can adorn their reality to some degree it's not going to be a complete carbon coffee but try and think about right so if this person has visual perceptual challenges it's about getting to that mindset of thinking about how they see you how they see the environment the next thing is is about putting so first is kind of awareness exists the second is trying to merge and empathize the third is practical so with people with the visual perceptual challenges which I've described um you may have to use gestural language and if you notice when I talk it's very gesture based you know lots of if you notice the way I talk with my hand which isn't completely unique but there is a reason why and it's about if modeling kind of the way in which I speak with what I'm saying so that can aid tracking um it may be that you need to use objects of reference so tracking objects and and creating um potentially the object or multiple objects as focal points to aid with tracking and multi-tracking because if you're living in a monotrap world and pictures don't work so pictures aren't giving you what you need to create that association they may need objects they also may need to touch and experience the objects you know not just look at them and watch the tracking they may need to smile them they may need to sniff them they may need to hold them and experience them their hands may be their eyes and ears um the last thing I would say is that with that in mind when you're working with people who are object blind I mean in blind hopefully we've been open-minded diligent willing to learn willing to fail and the reason why I say willing to fail is failure is a friend if this doesn't work rather than taking the sting out of failure let's think okay let's try something else um if you're working with these children you know that may be object blind and extensively face blind you know where they're going up to people and sniffing people's hair or their sculpting faces or they're nuzzling into arms rather than seeing that as a problem let's try and understand it okay are they face blind and they need context that that is Paul or that is Thomas or that is Olivia so that would would be my recommendation that we have to actually start thinking outside the box we have to start thinking about how we can use our own bodies our own language to create meaningful connections and finally I suppose it's all about ethos and will your own internal willingness to learn awesome well thank you very much for that Paul I think it would be good to kind of try and wrap things up because we've been I think we've been talking for a while and I always say this because you know I'm not very good at wrapping things up and I very much like to continue diving into the details as much as possible so that's very much I've been very much very interesting to to hear about your experiences and like seeing the world from your own eyes from childhood to adulthood you know some of the difficulties that is that is presented some of the ways that you've kind of lent to understand and process past experiences as well as kind of giving us a good kind of summary of things to keep in mind when communicating socializing being around people with visual differences do you have um a song of the day a song that is either related to the topic of the podcast or just one that means a lot to you that you could share others oh yeah I believe I yeah I shared that with you you spin me which is is an interesting one really because I like 80s music and I got more heavily into 80s music funnily enough when I started working yeah so you spin me uh was was harking back to my youth it me and my friend Chris he was a colleague of mine we used to play it all the time he seemed to like it as well um every time we were in the car we're in his car together we were always I got the album that it's on youth quake and we I used to play it probably too much I used to play it in his car while I was baking when it I was up in the um when I was up in the the warehouse I think it annoyed a lot of people even in the staff room once and the line manager had to abruptly turn it off so yeah it's just one of my favorite songs it's one of my go-to songs um it it's just lasted it it's so long in my mind usually you listen to a song and you can kind of put it away and you don't listen to it for weeks and months or years but that song um is because it's so catchy and it's quite fun it's not um it's quite light actually yeah it's quite amp it's disco it's very gay and I like gay disco I think divine is another um it's she was a drag queen who'd done a lot of really cheap nasty sounding records and I mean that in a positive sense you know really cheap sounding couldn't sing a note but it was just brilliant to listen to as odd as that sounds um so yeah you spin me right around like a record that's the one yeah awesome well um Paul do you have any links uh to anything that you would like to share with the viewers about yes anything that you'd yeah I do check out or yep absolutely I've got um a blog which is wordpress so if you google um Paul Isaac's autism blog autism from the inside um that is my my wordpress blog which I I'm not as regular as I used to be because I'm busy doing other things but there's about goodness me there's nearly 10 years worth of blogging on not not to be confused with Paul McCullough from autism from the inside yes that's a good if there's anyone else similar uh what else I'm on twitter Paul Isaac's 22 um although I tweet not as much I personally find tweeting difficult yes yes me too um and not to sound too cynical mr Elon Musk but yeah tweeting is it you're hard to have a discussion with a tweet a lot of miscommunication we're tweeting uh I'm on instagram again Paul Isaac's staple of 12 that's yeah that's a ghostbusters reference if anybody wonders why and my grandparents house number so now also check out the podcast what what is the name of the podcast that um oh Paul and Olivia the neurodivergent podcast and that was co-created um by by myself and Olivia Olivia's really is very modest she's really the driving force behind behind the podcast Olivia's world Olivia's world um and she's also on instagram I think the final thing I can give you is um I've got a google site um which I'll be updating soon because I have a very exciting ventures I'm doing so if you google Paul Isaac's autism site or google site you can get you can get my my website so thank you very much I will put all that stuff down in the description well you can find my link tree down in the description if you want to go check out the 4DOD podcast on any of our podcasting streaming service as well as youtube where you can find different clips of me as well as shorts my instagram which is not currently kind of live at the moment I'm not really posting a lot but I'm posting a lot of stories it's at Thomas Henley UK um head over to there to get kind of daily usually daily blogs daily reels podcasts clips and shorts and things like that um and yeah if you're interested in hiring me for anything for any public speaking for any events uh or any guests interviews things like that just contacts me either through my instagram or preferably through my email address hi at thomashenley.co.uk you can visit my website as well to check out on all the other stuff that I've done and some of the reviews testimonials things like that but yeah um I hope you have enjoyed this and if you have please make sure to give it a rate give it a like if you're on youtube subscribe join a membership follow or whatever whatever your platform is and that would be really really appreciated as um as an independent creator like myself it is very much important for getting my message out for more people two more people and um I suppose my last question is paul have you enjoyed your 40 or experience oh yes yeah very much so even if I don't always show it I I have I have enjoyed it very very much I enjoyed the flow of conversation and where the conversations went um yeah it was an excellent experience thank you great I'm seeking that external validation no no no it's absolutely fine and in the context you why wouldn't you ask if it's your if it's your podcast I ask for audience feedback you know so it's a similar thing all righty well it's been absolutely lovely paul great conversation and I will see you all uh next week for another episode of the 40 orty podcast see you later guys