[Speaker 1] (0:00 - 7:22) Hello everyone, this is Anna Kennedy and we're talking all things autism. Been another busy couple of weeks for me as always. Yes, just to let you know, so some news. I've been asked to be an ambassador and patron for Autism Allotments, a place to grow and learn together. I've known this family that are part of this project for a few years now. They have four children, so it has actually been on ITV News. So couples wishing to build a sensory garden for children with initial needs. Paul and Michael Atwell Brice wanted to turn a disused allotment in Barnsley into an area for children with autism and epilepsy so that they can enjoy it. They are a voluntary community group where they're going to offer places for autistic individuals, their parents, carers and family members for a safe and safe place to grow. Fresh fruit, vegetables, plants, flowers to sell, learning vital life and workplace skills in safe, relaxed environment. I've seen the actual allotment itself and it was absolutely full of rubbish, scrap, you name it. So I've been watching Paul and Michael every weekend and any spare time that they have to try and clear the site. We've got quite a few volunteers that pop along. They might just pop along for that day or they might come and do a few hours. And it's going to be opening hopefully in the summer and I will be going along to the grand opening. So I'm really excited to see and also it will be a fantastic place for friendships to build on self-confidence. And yeah, it's been a place for some of our young families or autistic adults to go along. So new and exciting news as well. At the weekend, I was invited to Hyde Park where they were giving out awards for smaller charities. And we received as a charity Anna Kennedy Online, the Extra Ordinary Achievous Outstanding Charity Star Award. So that was amazing. And I sat next to a wonderful lady called Marie Manson, who has a centre in Battersea. And she received an MBE for all her work. So she supports families, women with domestic violence. She supports the homeless people. So every Thursday she cooks, I don't know how many hundreds of meals for people to come along. They also have a sensory room where they look after autistic young kids. It's a huge centre. So I'm going along in April to have a look and possibly maybe do some collaboration. So that's exciting. So thank you everybody who supports the charity. And I couldn't do it without all of my volunteers. Just to remind you of a wonderful book written by Daniel M. Jones, Autism for Adults. So Daniel Jones, the Aspie World videos are highly recommended for adults who get diagnosed later in life. Temple Grandin, author of Visual Thinking, The Hidden Gifts of People Who Think in Pictures, has endorsed the book. So it's a handbook for success on the spectrum. So autistic influencer, educator and advocate Daniel Jones is an expert on living well on the autism spectrum. He's here to explain everything he's learned and then some in this instruction manual and memoir about life as an autistic person. Dan book is packed with actionable advice that you can immediately start to put into practice. I've been following Dan quite a few years, B.I. And the book is available on www.theaspieworld.com. Just say that again. www.theaspieworld.com is always doing YouTube videos. So if you just check out Dan Jones, Autism Aspie, you can follow him on his YouTube or he's on social media as well. Last little thing I wanted to share is some research that I've read about in the S.E.N. Special Educational Needs magazine. If you're interested, if you're a teacher, whether you're a professional, a parent or an autistic adult, this is specifically for actually for all disabilities. So it's called S.E.N. Special Educational Needs. I'm looking at the March, April, 2024 issue 129. So Europe Diversity in the UK. The new study has provided insight into how experiences and features of neurodiversity vary among adults in the UK. So the study is the largest examination to date to explore the diversity in how characteristics relating to neurodevelopmental conditions are expressed among adults in the UK. The researchers say that it's provided critical benchmark data and a framework approach for examining the neurodiversity in the whole population, including people with one or more diagnosis. I'll just read you a little bit. So there's a variation of people's attributes and experiences across all populations. Neurodivergent people, such as people with diagnosis of ADHD, dyslexia, dyspraxia or autism may experience the world in distinctive ways. But we're only beginning to appreciate how traits and experiences associated with neurodivergent differ across the whole population. The new research carried out by the University of Birmingham has provided more detailed picture of what neurodiversity looks like among adults. Professor Appleby and his team asked a sample of 1,000 people representative of the UK population aged between 18 and 70 to report on their experiences of characteristics commonly associated with autism, ADHD, dyslexia and other conditions. So for example, high scores for characteristics associated with autism were linked with experience of challenges with social and imaginative skills, higher preference for routines and its attention to detailed numbers and patterns. High scores for characteristics associated with ADHD were linked with tendencies for inattentiveness, hyperactivity and impulsiveness. High scores in cortical high per exactability, I hope I've said that correctly, were connected with visual sensitivity and unusual visual experiences. Last one I'm going to read is high scores for characteristics associated with dyslexia were linked with low fluency with reading and word binding. The research paper is fairly, fairly, fairly going, but it's available online. So if you want to read more about it, please check out SCN Magazine. If you want to subscribe to it, it comes out every quarter. It's very useful, lots of useful information. Every quarter about conferences, there's book reviews, all sorts of information, really useful. So just to remind you, it's SCN Special Educational Needs Magazine. So my guest today is Dirk. Now Dirk actually was born in Germany, but he lives in Wilkeshire with his partner, Kim. So Dirk David. So hello, Dirk. Welcome to speaking on the All Things Autism. So tell me a little bit about yourself. So you lived in Germany. How long did you live in Germany for? [Speaker 2] (7:25 - 7:26) 26 years. [Speaker 1] (7:27 - 7:32) 36 years. And then you came over too. Was Wilkeshire the first place in the UK that you visited? [Speaker 2] (7:35 - 7:37) First I was in Somerset, so I'm not too far away. [Speaker 1] (7:38 - 7:40) Okay. And how are you finding it? [Speaker 2] (7:42 - 7:43) It's a little bit quieter. [Speaker 1] (7:45 - 7:46) You prefer quiet environment? [Speaker 2] (7:47 - 7:51) Definitely, yes. And of course, speaking my second language makes it much easier to block it out. [Speaker 1] (7:53 - 7:59) So when did you find out and when did you think that you were autistic? Do you mind sharing that with us all? [Speaker 2] (8:01 - 8:41) That was a couple of years ago, really. It's a bit weird. I've suspected that I've been on the spectrum for a longer time. But I was kind of suffering from the stereotype that everybody knows about autism, you know, the whole Rain Man kind of thing. You see in movies, they're always depicted as somebody who's got severe problems with interacting with the world, but also always some sort of savant syndrome. They're always really good at something else, which really in reality is not the case. So it kind of gave me the wrong picture, really. I couldn't identify with that. [Speaker 1] (8:41 - 8:50) So we had a little chat earlier, and you're talking to me about a computer game called I Want You One. So talk to me about what it is. [Speaker 2] (8:51 - 9:43) The Game of Our Life is a visual novel in which you basically tell you the story of a kid, you're growing up with your new neighbour over the course of 15 years. And in that story, you can, well, I could really relate to that character to a degree I didn't think was possible. It's a bit of a spoiler, really. He is on the spectrum, but that's only being revealed right in the last chapter. And that, for me, was like being hit with a snatch hammer, basically, because I could relate to that character to such a degree. This disdain for change, his hate for surprises, anything like that, it was just down to a T. It's unbelievable. [Speaker 1] (9:45 - 9:50) So people, if they're listening in, if they wanted to find this computer game, Our Life, is it still available? [Speaker 2] (9:51 - 10:04) It is available. You can get it on Steam, on GOG or itch.io. And the base game is free. But you can spend some money for the DLC, get more content and more storylines, which I definitely recommend. [Speaker 1] (10:05 - 10:10) OK, so how far along in the game were you when you realised this sounds a little bit like me? [Speaker 2] (10:13 - 10:29) That happened straight away. The first couple of chapters I played, I thought, this is me. I'm looking in the mirror here. That's crazy. And from then on, I couldn't put it down. I just had to buy the DLC, basically, just to extend it. [Speaker 1] (10:30 - 10:32) So how long does it take to get through the game? [Speaker 2] (10:33 - 10:39) It depends on how fast you read. I mean, I'd say about 20 hours, maybe, if you take your time. [Speaker 1] (10:40 - 10:45) OK. And would you go back to it again, just in case you've missed some certain parts? [Speaker 2] (10:45 - 11:10) I am definitely going back over and over again because I still haven't seen everything. It's got quite a bit of replayability. It's also very inclusive. I mean, your parents are two mothers, basically. And you can create your own character, choose your pronouns, change your pronouns as you get older. It's amazing. [Speaker 1] (11:10 - 11:17) OK, so how old were you when you started playing this game? So was that nearly two years ago? [Speaker 2] (11:17 - 11:23) Yes, I was 45 then, so I found it by accident, really. [Speaker 1] (11:24 - 11:27) Yeah, so nobody recommended it, so you just sort of... [Speaker 2] (11:27 - 11:53) I saw a screenshot, it was newly released on GOG, and it was described as a feel-good game or a feel-better one. And at the time, I really needed something like that because I was just very stressed out. At the time, I had to do an oil change on my car, which was another thing I've done for the first time. And I just needed something to relax, something to calm my brain down, stop thinking, stop the voices. [Speaker 1] (11:54 - 12:04) OK, so I was going to ask you, so how was it growing up for you then before you realised that you were on the spectrum? So what was school like then? [Speaker 2] (12:06 - 12:16) School, in one word, was pretty much hell. I never liked going to school, especially later in life. As a teenager, it was just unbearable. [Speaker 1] (12:19 - 12:23) So what made it, if you don't mind me asking, what made it unbearable for you? [Speaker 2] (12:24 - 12:36) The other kids, mainly. It was just loud, overwhelming. The screaming, the shouting, the pushing. I just couldn't take it. [Speaker 1] (12:36 - 12:39) And what was school work like for you? Did you find it easy? [Speaker 2] (12:41 - 12:52) School work in general, yes, it was actually stupidly easy. Yes, it was just effortless. But it was just made difficult by the whole environment. [Speaker 1] (12:53 - 12:56) I see. And what were your favourite topics, if you had any? [Speaker 2] (12:58 - 13:01) I always liked reading, so I've been reading since the age of three. [Speaker 1] (13:04 - 13:19) OK, so what type of books did you read? Because my son Patrick, he used to love to read the dictionary, and Theosauruses, because he loved to know about the makeup of various different words. So what type of things did you like to read at such a young age? [Speaker 2] (13:19 - 13:40) I actually got teased for that as well, because I was reading dictionaries as well. I was just reading my grandmother's encyclopedia, basically. And I remember my cousin making fun of that. And how could you read that? There's no story in it. But it was just interesting for me to read, but apparently not for anybody else. [Speaker 1] (13:41 - 13:55) OK, all right, that's interesting. So once you got to teenagers, there was exams. How did you find those? And did you go on to college or university or anything like that? [Speaker 2] (13:56 - 14:23) I went to grammar school in the end, but it's, well, failed miserably because of the pressure. But again, coursework in the school itself, unbelievably stressful. I couldn't block out any of the noises, like scribbling pens, breathing, moving chairs, voices from the different rooms around me. It was just crushing, basically. [Speaker 1] (14:24 - 14:49) So sensory difficulties. I always remember my son, I've shared this before on the radio, that he would find it difficult going into classrooms because he was waiting for the scraping of the chairs, if you like, when they were pulling them back to sit down and putting them back again, or various different noises. He said he just found it difficult to concentrate and he found it quite overwhelming. Would you have said that was something similar for yourself? [Speaker 2] (14:50 - 15:11) Definitely. I've got really bad memories of the chalks reaching on the blackboard, for example. Or just horrible voices. Some teachers were of the shouty kind, should I say, the ones who just couldn't keep quiet. I'd like to say I learned nothing from them. I just had to block them out completely. [Speaker 1] (15:12 - 15:16) So what did you do? Teach yourself ways of blocking sounds? [Speaker 2] (15:17 - 15:29) Yes, I had to basically teach myself from the books we had given. I would prefer to just stay at home and read the books instead of being forced to attend class all the time. [Speaker 1] (15:30 - 15:35) Did it get any better for you when you went? Did you go to college or did you go straight into the work environment? [Speaker 2] (15:36 - 15:49) No, after school, after I phased my A-levels, thanks to all the pressure, I did my National Service in the Army. And after that, I basically turned into a hermit for six years. I could barely leave the house. [Speaker 1] (15:50 - 16:04) I was just going to say, you talked about National Service. I've spoken to quite a few adults where they found National Service easier to deal with than school and the reason being is because of the routine. [Speaker 2] (16:04 - 16:23) Easier to deal with, but I still didn't fit in. It was just basically doing two months in basic training and after that I had an office job where I was using the only computer in the whole building. It was easy for me, but again, it's just another place to endure really because there's a lot of shouting. [Speaker 1] (16:28 - 16:30) So how long were you there for? [Speaker 2] (16:31 - 16:39) Ten months and that's what my National Service concluded. I really didn't have any plans for after that. [Speaker 1] (16:40 - 16:42) So then you were back at home? [Speaker 2] (16:42 - 16:51) I don't see myself into the room and stayed there looking at the wall, watching people playing games and staring at the ceiling. [Speaker 1] (16:55 - 19:46) So this is Kim, ladies and gentlemen, that are listening in the background, everyone. So Kim is Dirk's partner. So Kim, would you mind me asking when did you meet Dirk? I met him about 24 years ago online and it was in a celebrity chat room and he was in the background, the most annoying person ever. And they all left and left me with him, the fans, and I just didn't have the heart to come out the room and just leave him, which I had done before and in the past. So we got chatting and I actually found that we had a lot in common. So his annoyance to me is the fact he used to come out with some really random, weird names, which were actually names of his techno music, which I didn't know anything about at the time. But that is what he listens to. And I mean, it's been years since I listened to techno, but it puts me to sleep, so that's another reason why I don't listen to it. But he finds it very relaxing. So after I met him online, we started chatting for about two or three years. He came over to England because him being Germany, I was in England. I took him over to Florida and we did Disney World and Universal Studios. I'm not rich, but I was divorced by then. And I'd also had an inheritance payout, so I had a bit of extra cash. So I took him out because he needed to be exposed to that kind of commercial life, being shut away for six years. He hadn't done anything. He had no experience of life. And I just felt that being older than him, that we needed to get him out to be able to enjoy what most children and most adults, young adults do. Most of them go to open towers. I've never been there, but it's something that most people hope to go to. I was going to say, was it overwhelming for you to go into Universal Studios? Now, I've got a bit of a reason for asking this, because my son Patrick is going to Universal Studios and he's going on his own for the first time in September. So I'm getting a bit of the heebie-jeebies. So how was it for you, Dirk? [Speaker 2] (19:47 - 20:04) It was quite overwhelming. I was masking heavily at the time, and I really tried my best not to run away from it as I normally would. It can be quite a daunting task, let's put it that way. It wasn't as crowded as I thought it would be, so that's the thing. [Speaker 1] (20:05 - 20:28) OK, my son has an interest in Jurassic Park, Jurassic World. He's read all of Michael Price's books. That's his passion paleontology. So hence why he wants to go to Orlando to Universal Studios. He's really looking forward to it. But I can see, as it's getting closer, he's getting a little bit anxious because he's going on his own. He does like to travel on holiday on his own. He's always done that. [Speaker 2] (20:29 - 20:31) My advice, bring earplugs. [Speaker 1] (20:35 - 20:38) What about the heat? Did that bother you? [Speaker 2] (20:39 - 20:51) Yes, it was quite stifling at times. But in Universal Studios, they have these little water sprayers all the way dispersed all over the place so you could cool down if you needed to. [Speaker 1] (20:51 - 21:10) OK, so you're self-diagnosed. So why self-diagnose this? Why not go straight to the GP to ask for an assessment? And why do you want to diagnose this? Because I've been asked this as well for my many people. Why do you want it so late at night? [Speaker 2] (21:11 - 23:18) I did go to the GP straight after I've done a bit of research, after I've played the game, and I realized there's something weird about it. I've been called weird all my life anyway, so that fits. I've found the Autism Cautioned questionnaire online, linked on the NHS website, funny enough. And I've managed to get quite a high score out of it. So the first time I did it, I just skimmed over it, and I had a score of 46. And then I thought, that can't be right. I'm doing it again for real now. I'm really concentrating on it. And I pushed the number up to 49. So I thought, right, maybe there really is something about it. And it's set on the NHS website. If you believe you may have Autism, speak to your GP. So I did. I called my surgery, got an appointment, another phone appointment, which I hate. And yes, I spoke to somebody I've never spoken to before, which was basically one of the locums. And he was asking me why I would want one of those Autism assessments. And I basically told him I've been on antidepressants for the last 20 years of my life, eight different antidepressants. I've been through cognitive behavior therapy, several meetings with psychiatric nurses. And he said to me straight away, he's surprised that I wasn't referred for an Autism assessment earlier. So he did that for me. And I haven't heard back for over half a year, basically, only to find out that I've been referred to the wrong section. Then it didn't quite go through the right way they anticipated. And it was just a bit of a mess, basically, that surgery wasted one year of my time. But I'm now on a waiting list again, hopefully, on the right this time. Well, yeah, pretty much a year and a half have passed so far, but it's... [Speaker 1] (23:19 - 24:19) Yeah, this waiting list depends on where you live as well. You know, we spoke earlier as well, but, you know, since so many people, as in the celebrities... Yeah, since celebrities, you know, that have come out to say they're on the spectrum, there's various different programs. A particularly good program, I think, is the one with Chris Packham inside an autistic mind. I think that should be shown in universities, colleges, schools. I just think it explains it so well. And obviously, very proud that one of our ambassadors, Ethan, is on the program. I think that should be shown. But, you know, I only just read a couple of days ago in an online article saying that there's a waiting list right between 18 months to right up to five years, depending on very much of where you live. So that's frustrating for many. So what do you think is different in your perception compared to neurotypicals? [Speaker 2] (24:21 - 25:49) It's a bit difficult to explain because I don't know how neurotypicals really perceive the world. So all I can think of is my sensory problems. I'm extremely sensitive to light. I can't block out noises as such. I don't like being around people. I don't like all the stereotypical things for autism, basically. I don't like small talk. I've been described as weird all my life. So it's what neurotypicals seem to perceive. They seem to be able to filter a lot better. Any background noise, they just forget about it. It doesn't annoy them anymore. Any music blaring in the background when you're sitting in a restaurant, for example, and they don't seem to rehearse for everything. Like, for example, if I'm sitting in a restaurant, I'm going to the bar to order food. I've got 10 different scenarios in my head as to how that might go along. I mean, I've got the menu in my head. I've got what I want to eat. I'm kind of rehearsing. Who am I speaking to at the bar? Who will be there? Will there be somebody cutting into the queue? Will there be some other distraction? It's just the whole rehearsal process going on in my head constantly, which can make everyday life extremely exhausting. [Speaker 1] (25:49 - 26:26) I was just going to say, that must be exhausting for you. I was also chatting to another gentleman about my husband, Sean, who's also on the spectrum and a barrister. And, you know, when he's been through a tribunal, whatever it is that he's done, he'll come home and he just doesn't want to talk about it, which is absolutely fine. But he sometimes just has to go to sleep for about 30 minutes or so, just to be able to reset his brain and be able to get on with the rest of the evening type of thing. And I've got used to that now. Would that be something that you do when you get in from work? [Speaker 2] (26:27 - 27:00) Yes, I get that all the time. I just have to sit down in the little room here and crash for a while, basically, before I can even think of interaction with anybody else. Even my partner, which is frustrating in a way, but I just need time out. I just need to sit quiet and everything down in my head. It's just coming back and flashbacks everything. So I need to sort it on first before I can even think of getting out and get some food or something like that. But, you know, the resting period is very important. [Speaker 1] (27:02 - 30:47) OK, so if you don't mind, Dirk, Kim, can I just ask you, because I don't get that chance to speak to that many couples as reference to. So obviously, myself being included. So Dirk says he doesn't like small talk or chit chat. How do you find that? Because sometimes, you know, you just want to come in and have a little chat. How do you cope with that? Yeah, it's very frustrating. How I cope with it is normally I'm just very direct. So it's it's a definite question. And if he says no, I said, right, well, we're going to do it. That's it. There is no small talk involved. That's what we're going to do. And it's like a bit like your radio show last Friday. He had a flip and said, I'm not doing it. OK. I let him walk out and go to work and then I called him back from work and said, you are going to do it and you will do it because you've already let them down once. So you will do it. And basically, he came home, he sat and talked about it. I let him chill for about two hours and then we knuckle down to the questions. So it wasn't difficult, as I said to him on the phone. It's a case of just putting it in smaller pockets. So you're looking at this breeze block, which is the whole story. Yes, I can't move it, but you can because you've got to chip it down into little bags. And then we work with the bags rather than the whole thing at once. And once I've done that with him, I mean, he'd made the questions himself. He just couldn't put the pictures into words. So it was just a case of him to explain it to me. And then we were able to do these little bags of questions, basically, to get through the list. But yes, small talk in general, we don't normally because he doesn't understand small talk, but honestly doesn't and it is frustrating. And so it's I always ask his opinion, no matter what it says, is what I say at the end of the day. So what interests, what do you do together? What do you like doing together if you don't mind me asking? I know it's not bored, isn't it? No, they see the world in a different way. And you know, I've learned that now with my husband, I know what works with him, what doesn't work with him. You know, sometimes you always don't get it right. But he just doesn't like, for example, he just doesn't like holidays, my husband. And we went on holiday for the first time in like 20 years or a few months ago, we went as a family and it was tough. The first two days were really tough. So I thought it would be going to be more tough with my sons. But it was actually more tough with my husband. He found it really stressful. But then we went to the Roman bar. We only went to Bath. We didn't even go on a plane or anything. We went to Bath and we actually went to the Roman bar and he really enjoyed that experience. And that was when he sort of shut us open and he found it. But he's obviously still happy to get back home. But that's when he started to relax a little bit more. Yeah, we do museums and don't like to learn. So I will ponder around the museums as long as I've got seats. I'm fine with that. And we do go out for meals quite a lot. As we can afford to. Do you have to go out for meals? Is there certain foods that you like to eat? Because obviously that can be a sensory experience as well. [Speaker 2] (30:49 - 30:52) There seems to be a pattern. Wherever we go, I normally end up with a burger. [Speaker 1] (30:53 - 30:53) OK. [Speaker 2] (30:54 - 31:02) It's always the same pretty much. It's a burger or pizza. But it's yeah, I'm quite boring when it comes to food. [Speaker 1] (31:03 - 31:23) OK. All right then. Do you have any quick issues? I was going to say because a lot of people tend to eat the same foods. But some people that like for example might have spicy food or whatever it may be. It can cause a lot of gut issues. I know that with my own sons. There's only certain foods that they can eat because obviously it's too much for they've got to take. [Speaker 2] (31:25 - 31:33) Yes, there are sensory issues as well. I can't eat mushrooms for example. They're just the wrong texture. Texture and flavor to be honest. [Speaker 1] (31:35 - 32:26) There is a story behind the mushroom though. Tell the story. When he was doing his national service he had a mushroom soup which put him in hospital. I think that's most probably why he doesn't like mushrooms anymore. Well I actually love mushrooms. I wonder why they put him in hospital. He was poisonous. He was poisonous to him. Oh wow. So he's allergic to mushrooms but he didn't really know that at the time. And we've all played now. Can I ask another thing? Sorry. I was going to say about dating. Because obviously I've spoken again to a lot of autistic adults. They find dating quite difficult because of the social aspect. [Speaker 2] (32:28 - 32:31) I haven't really got any experience in dating to be honest. [Speaker 1] (32:33 - 32:42) Okay. So I suppose it was easy for you then because you met on a chat room. You already knew a little bit about each other. It wasn't as if you were going through something. [Speaker 2] (32:43 - 33:02) Exactly. That's a totally different environment. You can basically stay at home and do that. But it wasn't done to actually find somebody to stay with or to live with. So it wasn't the purpose of dating to go there. It was just meeting like minor people really. [Speaker 1] (33:03 - 33:15) Okay. And then living together. How was that for you with reference to sharing the space together if you like? Again, only if you want to share. I don't want to pry. [Speaker 2] (33:16 - 33:21) It took a while to get used to that for certain. But it beats living with your parents. That's for certain. [Speaker 1] (33:24 - 33:25) Do you have anything to say? [Speaker 2] (33:26 - 33:30) No, I'm the only child. I'm the accident. [Speaker 1] (33:31 - 33:32) Oh, don't say. [Speaker 2] (33:33 - 33:34) That's what my parents said. [Speaker 1] (33:35 - 33:36) Really? Yes. [Speaker 2] (33:37 - 33:41) They told me at age two that I was an accident. I can't forget it. [Speaker 1] (33:41 - 33:52) Oh, no. I'm sorry to hear that. You know what? I'm really enjoying chatting to you, considering before we spoke that you were very nervous. But I think you're doing a fantastic job so far. So keep going. [Speaker 2] (33:53 - 33:54) That's all. Thanks. [Speaker 1] (33:55 - 34:05) Okay. So talking about diagnosis, late diagnosis, do you think there should be more support? And if so, what should it be? Do you think, in your opinion? [Speaker 2] (34:06 - 34:30) I'm not sure. I mean, the only reason why I'm really seeking a diagnosis is, I think they call it hatching autists. I'm not quite sure whether I am really autistic, although I know I am. But I also need professional opinion, so I need a proper diagnosis. The thing is, I don't expect any support, really, from having a diagnosis. [Speaker 1] (34:30 - 34:31) Okay. [Speaker 2] (34:32 - 35:25) I don't think there's any support available as such, because if you've muddled through your life for decades, then you're not really in danger anymore. It's almost as if they think that you don't need support because you managed to go that far. When it comes to people under the age of 18, of course, then it's a different story altogether. There's got to be support available. And of course, the whole awareness of autism needs to be ramped up by quite a bit, because I don't believe that there's only 1% of the population that has this condition or is on the spectrum. I mean, obviously, we're all different. So there are severe cases and others that are heavily masked. But I'm not sure about support. I don't think I would be able to have any after the diagnosis. [Speaker 1] (35:26 - 38:39) Well, in reference to education, there's something I'm not sure if you're aware of called the Education and Healthcare Plan, and that can go right up to 25. Now, while it stops at 25, I really don't know, because autism is a lifelong condition. But it seems to stop at 25, and then after 25, it's a lot harder to get support. Now, I'm looking, I suppose, and then it's because we set up the college for my son, but I'm no longer involved in it. But Angelo's 31, and he's always going to need one-to-one support for the rest of his life. He's got minimal verbal skills and no sense of danger. But I'm lucky that he's at a day placement for 44 weeks of the year. So he's going to be going there. But again, due to everything being cut, social care cuts and what have you, there's quite a few adults that basically, once they've got to age 25 and their EHCP no longer kicks in, parents seem to think that social care are going to jump in. But that doesn't happen a lot of the time. So then some parents are having to give up their job or set up a business where they can work from home or whatever it may be. So hence why I set up my petition as well, who's going to look after our children when we're no longer around, because that's what I worry about, who's going to look after Angelo, who's always going to need support. And then if the local authorities don't know how many parents are at home looking after their adults, how they're supposed to put the right provision in place. I just recently went to visit the Simon's Trust, which is a parent that has set up something for 10 adults and they feel that other parents can do this across the country. So I've just actually added it to my petition. So if you haven't signed or you haven't seen my petition, if you look up who's going to look after our children when we're no longer around, then you'll see my name, you'll see the article that I've just added. But if you haven't signed the petition, please do. I have taken it to Rishi soon. I haven't heard anything back yet, but people know I'm like a dog with a bone. I keep pushing. I have signed it. Oh, thank you so much. Because I've spoken to adults that are very sad that, you know, when parents have died, three have come in blind, in particular one gentleman lived in Cornwall. You know, he ended up, you know, a gentleman that I know that I helped a year ago. He was living in a tent because his mom and dad died and his dog. So I'm pleased to say he's now living in his flat. And another gentleman that I know, you know, both his parents died, then he was moved 50 miles away from where he lived. So away from all friends that he had or any social circles that he built up. So again, that was very difficult for him. So yeah, very frustrating for parents of adults and as I say, a worry at the back of the mind. So I suppose in a way, you've met a really wonderful lady, Kim, who's supporting you. So I probably feel that you both support each other. Would you say that? Yes, definitely. [Speaker 2] (38:40 - 38:42) I think I was more than lucky. That's for certain. [Speaker 1] (38:43 - 44:04) Yeah. Oh, lovely. I'm reading here, Kim, that you're a practitioner in massage for autism. So tell me a bit about that. Yeah. I learned it from Juliana Wieter. Oh, I love Juliana. She's one of our well-being ambassadors. Yay! Yeah, I did a course over two days at the weekend, just before Christmas. I learnt to do the massage. Unfortunately, Dirk was too ticklish to practice on. So we got three cats. I did it on the cats instead. And it actually worked. I can't believe how much it worked because we start off with freezing cold ears and after five minutes they're red hot. So it worked. I was going to say, people listening in, you give them any, because people that listen to women's radio love tips and advice. So what advice would you give to people? So what is it, something quite simple that you could do to help relax? Can you share some tips? I think the massage is quite evasive, honestly, to be honest, for children with autism because that's what it's based for. They have an issue with the sensitivity of touch and that's what the problem was with Dirk. But I am also a Reiki healer, a Reiki master. And this is an excellent way of just allowing somebody to just put their hands above your skin just for them to receive the energy that we produced. And what it is, is it's the energy that's around us that we're surrounded by, just the channel, basically, and the person takes it off of me. And it's positive energy because it's already been positively charged. I've cleaned the room basically, cleaned out all the rubbish, cleaned out all the people that shouldn't be in there, all the dark spirits, which we have them around us. That's what causes our low mood. And then it's all positive energy. So it's just a case of connecting to the energy and they take it from me. And they don't have to even lie down. You keep your clothes on, you sit in a chair. I just lay hands around them. I don't actually touch them. And oddly enough, after a glass of water, and it can take up to 45 minutes to an hour, they will get up and walk away like somebody turned a page over in a book and it's a fresh start. And mentally, it actually helps you to focus better in the day and as you get on. So the more you have, obviously, the better it is. But I'm not saying that you need to keep it up. I mean, I've seen people. I used to have a practice. And I saw people that were struggling with relationships. And after about three or four attempts of coming in, and he said, I don't believe this is going to work. And I said, I don't really care. Give it a go. Give it a go. You're here. Let's give it a go. OK. I apparently saved his relationship the second week. Oh, wow. So he only had two. Yeah. How long did it take to train to be a reiki healer? Or what would you call it? A healer? Yes, a healer. And a reiki monitor because I can train others in tune. But yeah, it takes a day. Is it really late? Yeah, it's just a day. And do you have to be a certain type of person? No. Not at all. Anyone can do it. Oh, OK, then. I'll have to look into that. I've heard of reiki, but I've never actually experienced it. So I'll have to read into it and see what it's all about. Well, I'll have to go because it's worth it. People say, oh, well, there's nothing. You know, when you go for a massage, you want to be touched and pushed around. But no, this isn't actually nothing like that. But the side effects of reiki is that you will dream. So at night, when you go to sleep, if you haven't had enough fluids, water fluids, you will dream and you see colours in your dream. And they're vivid. There's nothing horrible as such that happens. But you just see a lot of like you're standing in a rainbow of colours. And that's what you see. And what that is, is your body is getting rid of the negative essences that you've got because you're flushing them through with the water. I do say to people, don't drink alcohol because the first 24 hours is crucial that you don't drink anything that's toxic. And I did have a lady come in that did have a glass of wine that night. And she said to me, they'd gone out for a lovely meal. She had this mouthful of wine and then suddenly dawned on her. Oh, I'm not supposed to drink alcohol. So they left the restaurant early. She went home. She was sick. And that's what it can do. And she said, I felt absolutely awful for the rest of the week. And it can do that. Dirk, have you had any rookie healing? [Speaker 2] (44:06 - 44:13) I'm not a very good guinea pig for it. Let's put it that way. I can't disprove the effects, but I seem to be immune. [Speaker 1] (44:15 - 44:39) You don't have to believe. That's the thing. You don't have to believe it would happen. I would rather have people in that don't believe in it. He doesn't believe in it, but I can't get close enough to him to be able to do it. That's why it doesn't work. OK, so let's go back to Dirk now and let's talk about employment. So you've been working for how long now? [Speaker 2] (44:40 - 44:44) I've been with the same company now for 17 and a half years. [Speaker 1] (44:45 - 44:46) What is it that you do? [Speaker 2] (44:46 - 44:54) It's sad in itself, but I'm a wood machinist, so I'm in control of a machine. I'm not the other way around, if that helps. [Speaker 1] (44:55 - 45:20) OK, so you've been there for 18 years. So talk to me about the demands of being in the employment environment and being with people. So how do you cope with that and how have you kept your job for so long? Because I've spoken to quite a few adults the way after a little while. They find it too overwhelming. They can't cope with everything that's going on. So what's the secret for you to stay there for 18 years? [Speaker 2] (45:21 - 46:09) The secret, I think, is because the company started out to be a lot smaller. I was working in a very, very small team, to be honest. So we were pretty much three people out in the yard and we were not quite specialised in doing our own thing, but it was easy to work together that way. But the space in between, you don't sit huddled together, anything like that. So you're working on those machines normally in pairs. So it's a totally different environment in some places. It's not like a factory where you basically cram together working on one big conveyor build. Let's put it that way. I've done that as a temp work job, which is, oh my God. [Speaker 1] (46:11 - 46:16) And can you see yourself doing that for many more years? Is there something that you aspire that you'd love to do? [Speaker 2] (46:18 - 46:50) I don't tend to think ahead that far, to be honest. I can't even see myself being alive still at age 50. I've always had that problem. I couldn't see myself living at a... When I was a teenager, I couldn't see myself making it to 20. Then I couldn't see myself making it to 30. Here I am, I'm 47. You're doing something right? My vision of the future is kind of blurred. It's just not something I can imagine, I think. [Speaker 1] (46:50 - 46:54) Okay, and how do you look after yourself? What do you do to look after yourself? [Speaker 2] (46:57 - 46:58) As little as possible. [Speaker 1] (47:00 - 47:04) Okay. What I'm saying is, do you go for walks? [Speaker 2] (47:06 - 47:24) I'm playing computer games. I like to be huddled up in this little room here with my computer and play my huge list of games. The trouble is, I'm playing the old stuff over and over again because it's just comforting and I know what to expect. There's nothing wrong with retro gaming. [Speaker 1] (47:26 - 47:50) No, I know a lot of adults who do that. I know a lot of adults. My son plays certain games that he's played quite a few years and my husband also does the same. With reference to employment, do you think that the unemployment rate for autistic individuals has anything to do with the expectations and demands from the company? [Speaker 2] (47:52 - 48:19) Most likely. I've looked up a bit about pathological demand avoidance. There seems to be a pattern that if you are being tasked with something you have difficulties to actually perform that task because somebody wants it from you and it all of a sudden just slips out of your head and you can't do it anymore because somebody is pushing you to do it. It certainly makes life difficult. [Speaker 1] (48:21 - 48:38) When you do your... I suppose because you've been doing it for such a long time now you've just come second nature to you. But I know with my son he needs to have a list of things so he knows exactly what's expected of him each day so he can tick them off but he does it. Does something like that work for you? Or is it because you've done this job for so long now? [Speaker 2] (48:39 - 49:03) That helps. But of course at the end of the job, we've got a little computer system so you can see the amount of orders that need to be done for the next day so you can basically plan ahead just to see somebody else just ruining the whole plan. But hey, that's life. But it makes life easy to have a list in front of you and I'm always staring at my computer screen at work. [Speaker 1] (49:04 - 49:11) Have you shared your difficulties with your colleagues at work or have you just sort of kept close to yourself and just get on with your days to do work? [Speaker 2] (49:12 - 49:17) I've been trying to hide it pretty much all my life. I've been suffering from meltdowns. [Speaker 1] (49:19 - 49:19) Sorry, suffering from? [Speaker 2] (49:20 - 49:40) Meltdowns. It's early as childhood to be honest but I've always managed to hide myself away when it happens like hiding the toilets in school, for example. Now before I knew about autism, I always thought these meltdowns were like migraine attacks just really severe headaches. [Speaker 1] (49:41 - 49:41) Okay. [Speaker 2] (49:42 - 50:05) But I didn't realise that it actually had anything to do with autism until my supervisor at work actually spoke to me about it. His son is suffering from meltdowns pretty much on a weekly basis and he has to use grounding techniques to bring him out of it so he could identify it in me that I am most likely suffering from it. [Speaker 1] (50:07 - 50:21) Can you explain to me for people listening in for parents who are trying to understand their children more? I have this with many other autistic adults. What does it feel like? You can explain it. Do you have a meltdown? And do you know what the triggers are? [Speaker 2] (50:22 - 51:07) The triggers could be literally anything. Bright light, loud noises, too many thoughts, flashbacks. It's the effect of it as I suppose for an outsider looking at you. I can only speak for myself of course, but I end up on the floor with my hands and feet completely tight, my whole body is cramped and there's just snot running out of my nose, you wouldn't believe it. Where the fluid is coming from, I don't know. But I normally end up in a puddle on the floor, unable to move, unable to speak, just in pain. [Speaker 1] (51:09 - 52:27) It's a bit like having a massive migraine where you can't put your head on your shoulders and you've got to lean it on something. A headache is the hardest part I think of the meltdown and then because he's cramped up, every muscle has become really tight. When he does eventually come out of it, he's got like a fatigue thing going on with his body because he's trying to recover from all the cramps that his nervous system has managed to do with him. So it's all, I think meltdowns are mainly mental where you're not mental as mental. But as in your brain just seems to contract really tightly. The band around your brain just tightens up. When I say band, it's the muscle that goes around the top of your head. And it just becomes so static, it doesn't give. And it's like somebody crushing your head into a vice. And that's what the meltdown starts off as after it's been triggered by whatever it could be. Like he says sound, it could be too many questions, it could be somebody touching him when he didn't expect it. [Speaker 2] (52:27 - 52:30) Somebody interviewing you for a radio show. [Speaker 1] (52:31 - 52:41) And I asked him on the back and said, are you all right? And how long did they last? And then are you able to recall how you felt? [Speaker 2] (52:43 - 52:52) The shorter ones, they can be a few minutes. But the longer ones, I've had one that lasted for probably eight to ten hours. [Speaker 1] (52:53 - 52:53) Why me? [Speaker 2] (52:54 - 52:57) And it knocked me out for the rest of the week, really. [Speaker 1] (52:59 - 53:58) Yeah, my son Angelo, he tends to, I always know, because obviously he can't tell me because he hasn't got the verbal skills, but he tends to press his fingers together and I know something's coming. And then no matter what you do, you've just got to try and leave him. But for me, it's hard because he hits his head so hard that I'm worried he's going to hurt himself. He'll hit the side of his ear, he hits his head, and then sometimes he's got blood vessels that are broken, if you know what I mean, so it's all right. And it's just really hard for you to watch. I used to be able to help him almost like stop him from hitting himself when he was younger, but now he's 31, he's nearly six foot and I'm only five foot two. I just have to try and do the best I can type of thing, but just let him ride it through because that's all I can do. I can't really do anything else. It's not nice to watch. [Speaker 2] (53:58 - 54:19) That is one of the main problems. You just have to be given time to ride it out. And when I heard it at work the last time, they had to call him an ambulance in the end, and the ambulance crew didn't know what to do with me. So they're not trained for that kind of scenario either. It's just giving you space, giving you time. [Speaker 1] (54:20 - 54:20) Yeah. [Speaker 2] (54:20 - 54:41) You get into a dark room without noise, it's just absolutely nobody touch you, please. It's just one of the ambulance crew touched me on the shoulder while I was having a meltdown, and it felt like I was being punched through the floor. So all my senses are pretty much heightened to a level that you can't even imagine. [Speaker 1] (54:42 - 54:43) Do you think it affects your blood pressure? [Speaker 2] (54:46 - 54:54) Yes, most likely my blood pressure is through the roof at the moment. I've been put on amlodipine just a few months ago. And my husband has as well. [Speaker 1] (54:55 - 55:22) Yeah, my husband has as well. And I have, but I'm on a low dosage. Angelo's okay at the moment, but I always wondered when he has these episodes and what if it affects his blood pressure. So we talk, because obviously this is a program about mental health, wellbeing, promoting wellbeing. So what you do for your own wellbeing and for your own relaxation is gaming. So is there anything else that you do that you can recommend to people? [Speaker 2] (55:24 - 56:13) I think playing computer games is the most effective method for me because it stops my, I don't know how to call it, thought spirals maybe, the incessant thinking, you could say, the voices in your head that you can't control, the flashbacks are normally a very visual thinker. And I'm struggling to put everything into words right now because I tend to like the eloquence. I mean, obviously I'm acutely aware now that the last sentence pretty much disproves that. But yeah, picture wise is normally the way I think. And computer games are full of them. So that helps, it's kind of a, you can call it a compatible way of thinking. [Speaker 1] (56:15 - 1:00:15) Can I just say? Yeah, I was going to ask you Kim, you know, what sort of tips and advice would you give someone who's living or a partner with or married to someone that's on the spectrum when they're having these meltdowns, what would you do to help your partner? Yeah, well, what I do is go and get some tissue and just, yeah, get on with it. And I have been looking at the ankle and say, get off the floor. But the best thing is to just leave him alone and just let him get over it. But I have been chatting to a guy on LinkedIn who is in the neurodivergent spectrum and he is autistic and got ADHD. And what he said, he's very interested in what other people say about how they manage the condition. And he said when he's having problems like meltdowns, because he has an internal meltdown, so you don't actually see him disappearing to himself as such. But he said when his brain is not working how he wants to do it, he builds his fire stack and then he takes it down again and he carries on building his fire stack. He said there is nothing to it. It's an automatic thing that he's known all his life. This is how you build a fire stack and then you take it down. And then you build it again. Because it doesn't need any thought, he said. So because it's an automatic thing that he does, it's relaxing for him. And so it brings him out of the spiral of a meltdown and his mind is somewhere else and he's struggling because he's also struggling with mental health as well. So his depression sometimes and he's on drugs that are not working as it happens. He said that he finds it just when he gets to the point where life seems not worth it, he does something totally mundane which shuts everything off around him. And so I think that these people are focused on what they enjoy, like dirt bikes gaming. He literally just stacks a fire and pulls it back down and starts again because it just gets them out of the thought pattern. Right. And it's relaxing to them even though to us it would look really mundane and terribly boring. I think the more that I talk to different people that are neurodivergent or autistic or ADHD, the more we kind of learn different techniques and with dirt meltdowns, the most recent thing that he said to me, which was very interesting, he said that it sounds like he was never directed correctly when he was younger as a child. But the thing is, they didn't know about that either. So although dirt is what it is, I think as for parents that have autistic children, they need to set the boundaries and all those kind of things and they have to stick to it. They have to be caught. I'm sorry I'm going to have to interject because we've got 30 seconds left at the end of the show. I could talk to you for another hour and I'm finding it really interesting and I just want to say thank you so much, Dirk, for talking to me today about your experience and thank you to Kim as well for chatting to me about your experience too. I just want to say it's been amazing. I've loved it. And yes, please do follow the charity website. Just remind everyone www.annaKennedyonline.com and contact me if you'd like to be a guest on Women's Radio Station. I just want to say thank you again, Dirk and thank you again, Kim. Thank you. Thank you. Thank you, everyone. Take care, please. Bye.