Daniel Jones is the founder of The Aspie World (TAW), an internationally-recognized patient leadership platform that works to help the world understand autism — from an autistic person’s perspective. It has become the UK’s #1 resource for Asperger’s syndrome, ADHD, OCD, and dyslexia. With a YouTube audience of over 100k and over 8 million views, Dan has become an influencer and public speaker — and a leading voice in the autism community. Diagnosed on the spectrum at the age of 26, Dan’s life suddenly came into sharp focus. A musician by trade, he always thought he was “a little different”, and immediately began seeking community in order to shift his understanding from the clinical world into the real one. From there, things really took off. In this episode, he sat down with Lauren to talk about his experience — and how patient advocacy has changed his perspective. His energy is infectious and upbeat — so prepare to be wowed!
Tune in as Dan shares:
- that he didn’t know anything about autism until he was diagnosed on the spectrum — at 26
- how Dan’s mum-in-law suspected his diagnosis and encouraged him to seek assessment
- that he was probably one of the last people in Wales to receive an Asperger’s diagnosis — before the DSM-5 moved Asperger’s, autism, and other developmental disorders under the umbrella of autism spectrum disorders in 2013
- that his diagnosis was liberating, and helped him understand past behaviors
- that the conservative government in the UK imposed austerity measures that have made Dan lose essential mental health support services
- that he’s in the middle of writing his second book
- the importance of the patient voice in autism advocacy — and how infrequently we have access to resources for the community, by the community
- how he structures his day with apps and activities, and why he’s committed to self-improvement
- about his issues with small motor skills and spatial awareness
- why he needs to be able to control his environment to some degree
- how autism diagnosis and treatment protocols serve men much better than women
- why autism is f**king cool
- how the NHS is inaccessible for individuals living with autism
- why YOU are f**king awesome
Lauren: Okay, guys, thank you so much for joining us. I am here today with Dan Jones from The Aspie World. Dan lives on the autism spectrum. And he's got quite a well-known YouTube channel and plenty of social media outlets there under The Aspie World, and he's going to talk to us all about it today. So Dan, thank you so much for joining us!
Dan: Hey, it's my absolute pleasure. I love doing this kind of thing. I run my own podcast as well, so I know how it goes. It's just good to be here. So thanks for inviting me on.
Lauren: Oh my gosh, absolutely. And I'm particularly excited to have you here because, as anyone who listens to the show knows, I love having international guests on, because the differences in the healthcare system and the way that your condition has been approached may be different. So I’m kind of excited to learn how that's been for you. I love to start right at the beginning. Can you tell us when and how you were diagnosed with Asperger’s, and what steps you took to control your health from that point on?
Dan: Yeah, absolutely.
Prior to actually having a diagnosis, I knew very little about autism. Actually, I was completely in the dark about it.
I knew nothing about it. It never kind of came into my life; I never needed to know anything about it ironically. What happened was, I was failing at school and stuff like that. And I have difficulties in jobs and things, and I was always kind of quite a bit odd, a bit out there and people didn't really know how to take me, blah, blah, blah. My girlfriend's mother's a mental health nurse. So when I got together with my girlfriend … I was around her mum quite a bit … she asked, “Does Dan have autism?” And my girlfriend was like, “No, not that I know of.” And she asked me, and I said, “No. I don't.”
Lauren: So you were an adult at this point. And you hadn't been diagnosed.
Dan: Yeah, I was in my 20s. When I was a kid, my parents took me to see all kinds of specialists and things like that. Back in the ‘90s up in Wales, which is quite rural compared to the rest of the UK, there was no way they were going to be able to diagnose anybody with autism. It just didn't exist. The protocol wasn’t there. But yeah, so she asked me that, and I didn't think anything of it. I was doing this access course to science, because, as a lot of my friends know, I have a degree in chemistry. And to do that, leaving school with no qualifications, I had to go back and do this access to science course, and then do another access course, and then do the degree.
Lauren: Like an Associate’s out here; you had to do the required courses.
Dan: That’s correct. Yeah, they have to basically assess you on your ability to do stuff before they even grant you permission to potentially do a degree. I thought, okay, fine, let’s do it. So I was in a class with a woman whose son has Asperger’s. And she said to me, “You're very similar to my son.” She saw some of the hallmarks, and she discussed it with me. And then the pinnacle came … and this is all in the space of a couple of months really … it was quite interesting … the pinnacle came when I was at work. I had a huge meltdown at work because they changed my desk around. This was the longest running job I’d had, and I'd had the same desk for two or three years … and then they changed my desk around. It was really difficult. I had this crazy meltdown and huge attack at work. They sent me home and it was really bad. It was so bad that it took me weeks and weeks to actually be able to go back to work. I was working from home for a bit. Anyway, they sent me to the doctor and I went to see a counselor. And through this process, we were referred for an autism assessment. We did two or three assessments. And I scored really high on the test. and they basically said, “Oh, you have like Asperger's Syndrome with ADHD and OCD.”
Lauren: So this wasn’t the whole spectrum; they diagnosed you very specifically with Asperger’s.
Dan: Yeah, this was in 2013. The DSM-5 update [Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition] came out just after I was diagnosed. So, I had the Asperger's diagnosis. I think I was probably one of the last people here in Wales to get that Asperger's diagnosis. I was 26 years old. I'd previously had a dyslexia diagnosis because going through school, obviously, I was in special ed programs; they knew that something was amiss, but they didn't have the resources, basically, to figure that out. So that's how that came about. It was quite interesting. It was liberating.
So when we found out, we were, like, okay, so what is Asperger's Syndrome?
It's kind of like why I started my channel, actually.
Lauren: Well, so much of what you do on the channel is educational, for people who are looking in from the outside and going, ‘What is that? Why is this the way it is for people who are living with these conditions?’ You break it down so that it makes sense, and it's very clear and easy to digest. As you say, I guess you were processing that information at the same time.
Dan: That's exactly right. I'll get into it in a little bit about how I started, what the aims of the channel were — and still are really. But just to answer the question that you asked Initially … what did I do to manage afterwards? We had some information given to us by the assessors — all about autism. I was referred to Dr. Simon Moseley, who’s an expert in autism here in the UK. But I didn't get a chance to see him because he went to study somewhere else. But now he's back and I’ve been referred to him again. He’s quite an interesting guy. He's very good. I'm going to see him just for some therapy. And I was referred to another guy, basically a key worker who comes to your house; you can see him every week, I could see him twice a week if I wanted to. This is all government-funded as well. It’s to make sure that I was okay. He was an ASD (Autism Spectrum Disorder) development worker, and he helped me out with everything, going through the degree process; they can help with disabled student access, that kind of stuff. He was just fantastic. That's how we managed initially, because David Oliver, this guy who was assigned to me as a key worker, was just fantastic. He gave me all the information I needed about everything, and taught us; he gave us a DVD about Asperger’s. But his job came to an end because the the Tory government we've got in place now, the Conservative Party, they implemented high-austerity measures in the United Kingdom which trickled down to local funding for all kinds of social care. So I actually lost David Oliver as a key worker, and haven’t had one since. That was in 2013, or 2015 maybe.
Lauren: So five, six years ago. It sounds like anyone who might be getting diagnosed on the spectrum now isn't having the same level of care that you did when you were diagnosed, so in a sense you’re lucky.
Dan: Yeah, 100%. Even when I went to university, I had disabled student access. They gave me a MacBook, and I had a mentor, I had an in-class note taker, I had a buddy system. They had someone with me in my labs and stuff to make sure I could actually understand the instructions — because that's a huge issue for me. But now they’ve canceled all that. I’m telling you, I wouldn't be able to do my degree, I wouldn't be able to do much if I didn't have that access.
Lauren: So you have definitely benefited from some of the social services that have now been cut. And that's a very clear indication of the changes that have happened within the NHS because of, as you say, what's trickled down from the government — which we're going to get into. But I'm wondering if at any point along this journey to diagnosis and beginning to understand yourself, whether it was difficult for you? I know that it must have been kind of weird to have a lot of people come up to you and say, “Do you think you're on the spectrum? Do you think you have Asperger’s?" Was that offensive? Was there any part of it that really took you aback?
Dan: Well, no, not really, because I didn't know anything about it. It's different if someone had come up to me and said, “You remind me of Donald Trump.” Because then I would have known, I know who he is. But I knew nothing about Asperger's syndrome. I didn't know what the term was. So it was bizarre. And funnily enough, when this happened, Naomi, my girlfriend, was actually doing a degree in childhood studies, in childhood development in autism. It had taken her interest, and then it kind of made sense and why she took interest in me, I guess, because she found that kind of insightful. So it was really good. We kind of got to learn a bit from what she was actually learning. We could take home from that. But also, I just Googled stuff … What the heck is Asperger's? And the stuff I found was just not good. Because most people now want video, and it was old stuff, like really outdated blog posts.
Lauren: Well, I'm sure a lot of the stuff that you were finding then, as well, was stuff that was probably written less by patients and more by people observing from the outside, be they caregivers or otherwise. Which doesn't always put the most positive spin on these experiences either, does it.
Dan: No, I mean that’s exactly it, and one of the reasons why I did some online courses on Patreon. People say, “Oh, how did you get that idea?” And I thought, well, mainly people teaching are experts in the field, but they're not people on the spectrum. So I thought it'd be better to teach from a perspective. You're absolutely right.
Almost all the literature written academically is from a professional perspective and not a personal one.
So I think that really kind of hit home. Don't get me wrong. There's nothing wrong with professionals, they're doing everything they can. And that's a great thing. Because if we didn't have those people, I wouldn't be where I am today. But in terms of moving forward, it's nice to kind of evolve and grow with these things. And I think that's what we're seeing develop now with this kind of new movement of patient-led content, and patient-led books. I’m in the middle of writing my second book. I've got one book out. I’ve got a bestseller, actually in the US and in the UK.
Lauren: That’s amazing!
Dan: I know, thank you so much! It's in three languages; you can get it in Hungarian, Italian and English. And audio as well. That is like a philosophical book; I was talking about how I used Star Wars like a crutch growing up with autism. So it's a cool book. But I'm writing my second book now, and the second book is something I've really not seen anywhere — again, it’s from a patient perspective. The book is my journey of what I've learned and how I see the world. But then also hacks, and how did I overcome those things. How did I move forward. Because I had an advantage. I went to a mainstream school, but with special ed programs. Where people typically would go to a special school, and then work their way up to a normal school. I said “normal school", but you know what I mean … like the normal school system. Being forced into a typical school system gave me an advantage, where I was forced to sink or swim, and I had to swim as fast as I could. And I learned so much. Yeah, so it's kind of exciting. And I love just being able to help people really.
Lauren: Absolutely. So it also sounds like, while you were in the process of being diagnosed and learning about what you're living with, you also had these advocates built in, right … you had your girlfriend, you had your girlfriend's mom. So there were people who were coming out of the woodwork around you who were able to support you through that. Did you feel that you had advocates aside from yourself as well?
Dan: Yes and no. A mental health nurse who was specializing in dementia care, which is what Naomi’s mother is … she only knew so much. Her level of care was very limited, in terms of advocacy. But if you look at Naomi, she was currently studying the degree, so that was a high level of care advocacy, but still, it was novel for her at the time. So, I didn't really have anybody I was close to who was being a proper advocate. The one person I could lean on for information was this woman called Heather who was doing a course with; her son has Asperger's as well. And David Oliver, obviously, but then David's cut loose now. So I was kind of out there.
Lauren: A bit on your own.
Dan: Yeah, and then I decided that I would share that experience of being on my own, and what I was doing about it? If you're on your own, you're on a desert island … it’s, how do I I fix this problem? And that's funny, because I love problem solving. That's primarily why I like maths and chemistry, right, because I love problem solving, putting things together, like Lego.
So I had this problem where I didn't know anything about Asperger’s. And I'm thinking, well, I’ll just have to solve this issue, and learn and teach.
Lauren: So you really learned to become your own advocate.
Dan: Yeah, that's exactly right. My background is in performance. I've been a performer/musician for most of my life. I'm in a band and we’re assigned to a couple of record labels. We have a record out in Japan. And I do like keynote speeches.I say to people: problem versus solution. Problem solving is how you overcome things. It's trying to run people into different thinking, the outside of the box theory. So, as an example, I knew nobody in Japan, I couldn't speak Japanese yet. I wanted to get a number five; I actually charted higher than Sum 41, which is a really big Canadian rock band. That was kind of cool. So playing music and being a performer gave me kind of an ability to be more entertaining, I guess. So I thought, wow, entertaining people while advocating for a serious cause. So that's kind of how I came up with the idea of what I wanted to do..
Lauren: I think that's really exciting. So, what does a typical day look like for you as you're balancing the demands of work and life, and being aware of balancing your own needs? How does that work out for you day-to-day?
Dan: That’s a loaded question! (laughs) It’s very difficult to balance everything. And balancing with my specific needs. And those specific needs do get compromised by the balance of life. I have a partner, Naomi, and we have a son — he's 19 months old, so he's almost two— and that's demanding … he’s amazing, children are so funny.
So I’ve got this family and I love them and I want to spend time with them. But then I also have my work and I love my work.
My work is like a second child; it’s everything to me. I just always want to work and do stuff.
Lauren: Because it's a passion.
Dan: It is a passion, it’s a drive. I want to make so much content. If I could work and not sleep, that would be amazing. Let's talk about a typical setup. I try to work your typical 9 to 5, and I clock off about half-past 4. So from half-past 4, 5 o’clock till about 7, I’m with the family. We have dinner and we watch a little bit of Netflix or something together, or whatever. And we'll bath my son, and then he goes to bed and then my partner and I will watch maybe 45 minutes of YouTube, or we usually just debrief and talk and just chat, and have some tea. And then we go to bed. So I get up at 5am and I do this routine … and this is relatively new, but it's something that is definitely bouncing me out … when I get up, I do this thing called The Miracle Morning. I don't know if you've heard of it.
Lauren: Yes, you're not the first person who's actually brought that up to me!
Dan: It’s a fantastic book, and I have the audiobook because I'm dyslexic, so audiobooks are the way forward. But part of my morning routine is to encourage myself to actually read written word. So I slowly but surely work my way through a book by Napoleon Hill, a very famous book called Think and Grow Rich! It’s a great, great book. I've got the updated version, so the language is a bit more modernized, because, of course, this book is written earlier.
Lauren: You're on the improvement train as well!
Dan: Yeah, the thing I'd say is that my brain works in a way that’s like, ‘What can I do to improve?’ I always want productivity to be at its highest.
So my day is always trying to get the most out of things.
I remember I was on the NHS for dentistry, but I hadn't been to dentist for ages. And then my tooth crumbled away. I was, like, oh, my goodness. I found my dentist and he said, “Oh, you haven't been in six months so you’re not on our books, so you can have to go and pay for it somewhere.” This goes back a few years. So I went to a private dentist and ended up paying like $600. And it was a huge blow to me. I was a young man. I was, like, oh my goodness. And it made me think about my teeth, and I wasn't taking care of them, and I was thinking, I’ve just lost 400 or 500 quid on my teeth. I don't think it was a waste of money I could have just saved, though. I was thinking, no, I needed to invest that because my body's the only thing worth investing in. If you don't invest in self-improvement, then you'll only decline. You always have to strive for greatness. So this Miracle Morning gets me up at 5am. I do meditation, affirmations, visualization, exercise, reading, and scribing. Not in that order. But I do all of those. And then I hang out a little bit and I start working. Basically, part of my scribing is to set up my list; I've got a To Do list. I run my entire life on my iPad Pro. The best thing ever. iPads and iPhones just changed my life. I have apps that are just absolutely amazing. So my day runs on apps, alarms, and countless notes — Microsoft To-Do, which is an app, and Trello, and the shortcuts on the iPad Pro. All that runs smoothly.
Lauren: So it's really creating structure for yourself every day.
Dan: 100%. I'm really bad at organizing things and I needed that organizing stuff to be taken out. I needed an assistant but a digital assistant because I would have a hard time; I wouldn’t work well with a physical assistant. That would be weird.
Lauren: Yeah, somebody telling you what to do. You're very creative as well. It's also something that happens when you have a creative mind. You've got Asperger's, but you're also a creative person, so you need the structure. But it's better if you're in charge of it. And you can be in charge of it with these digital assistants and apps.
Dan: Yeah, these things run my life. The problem I have is that I’ll sneak downstairs in the evening and start working. And my girlfriend will be, like, “Where the heck are you?” And I’ll be in the living room; my office is in the downstairs level of our house. Or we’ll sit down to watch some telly, and I'm on my phone, and she’ll be, like, “What are you doing?” I'm like, “Oh, I'm checking stats or analytics or something.” So that balance is difficult.
One of the ways in which I manage the balance is I take my Apple watch and my iPhone, and I put them on airplane mode, and I put them on the side on the counter.
Lauren: Whenever you're with your family?
Dan: That’s right, yeah. And I dedicate that time. It doesn't always work. Nothing’s perfect. I'm not a perfect person. It's like a habit as well. You're trying to break habits. So that's kind of how I balance that. But in terms of where autism self-care comes in, I have to do things. Like, I take medication every day. I have prescribed medication from my psychiatrist. I’m very much a natural, vitamin type of person, but it gets to a point where my tics … and I hit my head and stuff … those things were getting too much. It felt a bit in despair because I couldn't stand hitting myself; you almost kind of resent yourself because you're doing this. So I needed a change. I have therapy once a week with a counselor online, which is cool. I use an app called BetterHelp.
Lauren: Yes, I know that app.
Dan: I actually just did a video on them, because they basically said to me, “Hey, do you want to try this out?” And they gave me three months for free.
Lauren: That’s amazing.
Dan: I know. They gave me an affiliate link. I actually haven't done the video yet, so I'm actually paying for it myself right now, which is how much I believe in it. The affiliate link and the video will be out this week, I think Friday or Saturday. I do a psychological intervention with Simon Moseley. And then I have a sensory diet as well. I exercise in the morning, obviously after my Miracle Morning. Then mid-morning to early afternoon, I go for about two-mile walk as well. In the afternoon, most days, I'll try and do some more exercise. It doesn't always work, but I like running. So today I ran almost four miles. That helps cement this thing called deep muscle proprioception, which helps with sensory processing disorder. It stops me walking into doors and door frames, because one of the things I've got is, I don't know how far to open a door so I can walk through it. My spatial perception is completely off. Like, putting a cup down on the side, I don't know how far away that is. I think one of the things I struggle with most in life, physically, is what they call micro motor skills, or fine motor skills. So, putting keys in doors … you know what I mean? It's super difficult.
Lauren: Like, little things, minutiae.
Dan: Yeah. It’s super difficult, and it’s incredibly frustrating. And I haven't found a way to overcome that yet.
Lauren: Is it just practice? Is it saying, all right, today I'm going to commit to doing 10 minutes of fine motor skills training — or something like that?
Dan: I have no idea. I try my best. I’m like a whiz with my iPhone; I can use my phone with my eyes closed.
But in terms of putting keys in doors and just the stupidest things like picking things up … it's so bizarre.
I didn't know this was something that was common in autism, but it it really is. A lot of people I’ve spoken to say they have the same thing.
Lauren: I mean, in general, spatial awareness is a huge part of the spectrum, isn't it? So as you've discussed, even putting cups down and walking into door frames and stuff … it's interesting that you found a way to help with the larger items, but it’s the smaller things. I’m sure you'll figure something out, and then you'll be able to share it with everyone.
Dan: Hopefully. I've got a couple of ideas. I’m thinking about trying to maybe use elastic bands, to strengthen the muscles. I’m a bass player and a guitarist by trade. So I'm used to that. They're quite big. But it's a really different experience. Picking things up and putting keys in doors is nothing like playing a guitar.
Lauren: Well, that's all one small thing, whereas a guitar, or bass, they're large instruments. And then you have small pieces on those instruments. But it's still a larger item that you're dealing with.
Dan: Yeah, I guess I'm not pincer grabbing something, like you do with a bass guitar. I just want to clarify something, though, with the sensory diet that I was talking about, which activates proprioception. It helps minimize … how I can explain it … when I do those things, it’s almost like it's in a sleepy haze. When you've had proprioception, you’re waking up muscles in the body. You're a little bit more aware of the fact that you're about to open a door, so you can take care. You might still touch the door a little bit, but you’re not going to rush through it. It’s not gonna be in a haze; it's gonna be a more active thought. That's the only way I can explain it. I did that with an occupational therapist, and it was just phenomenal. It absolutely blew my mind.
Lauren: So it’s not just diet, it's exercise as well. It’s like a whole lifestyle change.
Dan: Let me say that the sensory diet is not consuming food. It’s simply this … doing exercise activating deep muscle proprioception every two hours, basically a proprioception muscle kind of wake-up will last you two to three hours. So that's pretty much the principle.
Lauren: That’s very cool. I've never heard of it. And I'm excited to watch your video on it, which we'll also post on the website page for everyone.
Dan: Thank you.
Lauren: Of course. So, I know that you got diagnosed later in life, but have you ever had to justify or validate to others what was going on with you, particularly perhaps, at university, when you were trying to get accommodations and things like that?
Dan: Well, luckily for me, the university is a 20-minute drive from my home. So I was actually able to drive in every day and I didn't actually have to move anywhere. Thank goodness. I don't know how I would have coped with that. I've never had to justify it. But after being diagnosed, and having a diagnosis, you almost become more confident in yourself because you’re, like, this is me. But before that, friends would be, like, “Oh, let's all go to a friend's stag do — or bachelor party. Or, we’re going to go to Amsterdam to drink. And I was, like, oh my God, getting on a train and all that? It was just too much for me.
Lauren: Well, it’s so much that you can't control, isn't it. So much that you can’t predict.
Dan: Exactly. And they'd be, like, “Why is Dan not coming to these parties?” And, “Why didn't Dan do this? Why not?” And before the diagnosis, I'd have to try and justify it … like, "Oh, I'm not feeling well, guys.” Or, "You know, I've just got this thing on.” Then they’d kind of start cottoning on and ask, “Why are you putting these things off?” And it's hard to explain. I remember we were recording our first album. We didn't release that version of it; we were recording with Sony. But we were signed to a label in Manchester. And we were recording in the studio and then they wanted to go out to a bar and have some drinks and stuff like that. And I was, like, “Oh man, I can't deal with that. I just want to sit in the studio, and hang out." And the studio engineer was, like, “Well, we can't leave you in the studio because you could rob us blind.” My guitarist and I had a huge bust-up because he was, like, "Why are you being so childish about stuff?” It was just so difficult.
When you don't have a diagnosis, it's so hard because you try and explain to somebody, but you don't even know yourself what it is.
Lauren: But everything in your mind and body was telling you that you didn't want to do a thing, but you couldn't explain why.
Dan: Yeah, and I say this quite a bit on my videos and stuff, and anytime I do live streams … one of the things I'd love to do is just to go to London or Camden Town or wherever, and get a cup of tea and sit in a cafe on my own. I just could never do that. It could never happen. And that's kind of heartbreaking because I'm a 33-year-old man, you know, and there are these 18-year-old kids living in London independently, and I look at them and it's just incredible. And it's incredibly upsetting. I don't mean to put a downer on this part of the podcast …
Lauren: No, it’s real.
Dan: Yeah, it’s real. You almost feel less of an adult because you think, oh my goodness, these kids can do the stuff that I can't even do. But I try not to let it bother me. I just do me. And I like doing stuff. But it's weird. I've got a really good way of explaining what it feels like so people can have a visual of this. Have you ever seen the movie Beetlejuice?
Lauren: Oh, gosh, yes.
Dan: Okay, cool. So in Beetlejuice, Adam and his wife die in a car accident, don't they, and then they go back to the house and they’re soaking wet. And then they try to leave the house, and when they open the door to the house, there’s like a sea of desert with these huge snakes. It's like this crazy, oh my God! And they have to shut the door really quickly.
Lauren: It’s like a big surrealist painting, isn't it? When they open that door.
Dan: Yeah, it's like a sandstorm, and then there are these snakes and stuff.
Lauren: And that’s what it feels like?
Dan: That’s what it feels like. So if somebody said to me, “Right, you have to go from this office in London, and then you have to go a mile down the street to this place.” Even if I had the SatNav on my phone … oh my God, it's just too much. That's what it feels like. And the weird thing about it is, if somebody was with me, if you were with me, I'd be way more comfortable. I don't know what it is. I can't even explain it.
Lauren: Is it the idea of other people taking control of your routine?
Dan: I don't know if it's that. I think it's like delegation of things, because I can't focus on trying to get to a destination when there are so many people around me, and so many sights and smells and sounds.
So when someone's taking care of the navigation, I can mitigate the the unsteadiness, the uncertainty of the people around me.
I think that's what that is. But even then, it's not a nice feeling. I still get dripping with sweat; it’s just horrible.
Lauren: But this is also very typical of living on the spectrum. It's these changes in routine, this lack of control over your surroundings, can be very triggering.
Dan: Yeah, 100%. And I used to get so upset. Maybe four or five days ago, I was talking to my girlfriend; we were on a walk, and we passed my old primary school, I think you guys call it kindergarten. I used to live right next to the school. My high school was about half-a-mile away. And so my brother and sister, who were still in high school … I went to high school in ’97 … I'm super old …
Lauren: No, I started high school in ’97. But wait, then you started earlier because I started high school when I was 14. And I'm a couple of years older.
Dan: I started high school when I was 12.
Lauren: Oh yeah, your grade levels are different. Gotcha!
Dan: The first year, my sister and brother were walking me to school. But then they left, and for about two months before the summer holidays, for about a month, I had to go alone, it was horrible. It was like trying to get from the supermarket to your car with your eyes closed. Horrible. And so I’d prep myself up. I’d just run out the freakin’ door and run all the way and just try and figure out where the hell I was going. It was like Escape from New York, or that scene from 1917 … is that the name of that new film?
Lauren: I haven't seen it yet.
Dan: Where this character has all this stuff going on and he's running down this thing … It was just horrendous.
One of the words I never use is “hate” because hate is such a negative thing. But I absolutely hated school. I hated the whole process.
Lauren: Because it just didn't work for you. The structures didn't serve you and your needs.
Dan: No. But it did mold me into who I am today. So I’m, like, you never should regret things and wish differently; you should just go, okay, well, what did I learn from that experience? And that is the best attitude to take, I think.
Lauren: Absolutely. I think that's really true. So, do you think that you've experienced any particular privilege or prejudice within the healthcare system over there, the NHS — particularly in regard to self-identity? So in other words, because you're a white male, can you see your circumstances having perhaps been different if you presented otherwise?
Dan: Absolutely not. I think the NHS is fantastic. We live in a multicultural society in the UK; it's a fantastically multicultural society. And if you lived here, you'll know exactly what I mean. There's a very small group of people, a very small group of far-right extremists, who follow this guy called Tommy Robinson. And they're the people who caused Brexit at the end of the day. But they're only a very small minority of the country. And they're the only people you'd ever get prejudice from. In terms of the NHS and the healthcare system, it doesn’t matter what you look like, it doesn’t matter where you’re from, it doesn’t matter who you are. It makes no difference. The consultants and the doctors, they're from maybe India or Pakistan, and they're a minority group themselves. It doesn't matter. I love that about this country, because we're just people and that's how we should be seen. So, I've never experienced anything like that, or any privilege from being a white male, not at all. The only thing I would say was, that because of the way the old school systems for diagnosing autism were set up by Hans Asperger and Leo Kanner … they were geared towards males and I have no idea why. I think it's because females present themselves differently. And when I say females, I mean born genetically, female organs. They present themselves differently to males with autism, because of the way that their brain structure looks, typical binary ancestry traits. Forget about social identities, we're just talking about how human evolution works. And so I think that those traits that we inherit carry through, and so when you see autism, you see these same traits of typical humans masking in females where it would be more present in males. I think that's fascinating. But I think that the NHS lets down females in that respect, because, again, I just think they were always geared towards males.
Lauren: And also testing and the DSM, as you say, have been based on research on males and not on females.
Dan: Absolutely. It’s definitely changing right now. One of the most famous autistic people in the world is Temple Grandin. So the whole thing is changing. And the National Autistic Society in the UK, they’re running courses now on specifics for females, and how to diagnose and do all those things. Which is great, because it really bugs me that it was always set up like that before, but it's not something that I want to get annoyed about and get angry at people about. Because it's just how it is. We could sit and look at the segregation of African-Americans and white Americans in America till the cows come home, and say how horrible it was. If you look at the progress that’s been made, and Dr. Martin Luther King and Malcolm X, and you just think, wow, these people were visionary. And they did some great things. And that's how it was because people …
Lauren: People are willing to create change, yeah. That’s hopeful.
Dan: There's no point in worrying about what we haven't done; think about what we can do.
Lauren: And you can't change what has been, I guess is your point as well. The idea is to change what will be.
Dan: Yes, absolutely. I think it was Gandhi who said, “Be the change you wish to see in the world.” So just stick to that really.
Lauren: Well, I think you're very much living that way. And we're going to get into it. Can you tell us more about The Aspie World? You’ve also won a WEGO Health Award. I know you've dug into it a little bit, but tell us about the growth of the channel and what this means to you. You've told us how it started, but I'd love to know how you see it continuing to develop in the future, and the response you've been getting from people.
Dan: When I started the channel, I didn't think it would ever be as big as it is now.
I never, ever thought that it would be my job and my career.
It just happened, and that's an amazing thing. And I learned so much in the process. But in terms of what we're doing now, we're trying to create social change through support and community. And so one of the big drives is trying to raise understanding more than awareness — because everybody knows what autism is. I mean, you've got umpteen channels doing shows and different things on autism. And it's great, because of the work we've done making autism awareness a thing. But now we should move into more autism understanding. So we're trying to do as many info videos as possible across all platforms, to be a dominant education force from an autistic point of view. And it doesn't have to be me. I run a podcast video show where I interview other people as well. We talk, we share their videos on my platform. And so the future of it is, we want to be able to create heroes people can look up. Because I get lots of different feedback. I get academics and professionals messaging me saying, “Hey, this is amazing. Can you come to our hospital and teach … blah, blah, blah …” And I say, “Okay, I can do that.” Then I get parents sending me cards saying, “Thank you so much. Now I understand my kid better. This stuff is just amazing. It's mind-blowing, and … blah, blah, blah.” And I'm thinking, okay, this is cool, because it's reaching people. And then the thing that really gets me is when I get these kids who message me and say, “Hey, I've been a freak my whole life, and I felt odd and outcasted. But you're so cool.” One of the things I try to show people … I have tattoos, I skateboard, I play music, I sing. All these things I think are cool, and I want that image to come across so that kids can see it … because autism is freakin’ cool. That’s what my website says, and I want them to feel that, and it does work. And so the feedback I get from people saying, “It's cool,” and “You're my hero …” And they freak out when I message them back because I message everybody back, by the way. I love to connect with people. It's not a blanket message; it actually is a personal message. And sometimes I try to send selfies or a little bit of a video, depending on what time I have available. And I just love that, because what I want to create is someone autistic people can look up, and young kids can aspire to do something. I feel like, when the parents get this diagnosis of X, Y or Z, they kind of live that. They live the diagnosis when they shouldn’t. They should just be themselves. And the parents, unfortunately, become the kid’s biggest critics, because they say, "Oh, they can't do that.” Well, I don’t know. I'm dyslexic and I’ve got a bestselling book out in three languages.
Lauren: That’s right, that's right!
Dan: And it's published as well. I got a crazy publishing deal with it. I'm dyslexic. I get my lectures from the government on a CD so I can listen to them, that’s how dyslexic I am. And how do I do it? Well, you overcome it by problem solving. This is typically what I'm trying to teach.
I'm looking forward to teaching problem solving through creating autism heroes.
I'm trying to work a little bit more into TV right now. So we can create real-life autism advocates, Because again, you look at people who are like, “Oh, I'm an autism champion.” Some football player, or someone, wearing an Autism Speaks T-shirt. It’s okay, but where’s the awesome hero, do you know what I mean?
Lauren: You're putting more of a cool face on what it is to live with a condition like this, whether you have the condition yourself or you're a caregiver or a loved one as well.
Dan: And I feel like I’m giving a voice to people as well. Because everyone on the spectrum is different. And I'm blessed in the fact that I can speak very vocally about what I'm doing, and my vocabulary is very broad and I can express myself in so many ways. And I think I should use that for good. So that's kinda where we're going. We're just trying to push out as much content as possible. Like I said, we're on every single social media platform going. We have a podcast and a blog. I mean, we even have an Alexa Skill out.
Lauren: What?! You have an Alexa Skill? Tell us about it. Because I'm gonna obviously be using this now. I love that.
Dan: Okay, it's in beta testing, but you can still download it. It’s not launching until probably the summer, the full content; right now, you will get content on there randomly. So basically, it’s an Alexa Skill called a flash briefing. So you know, in the morning, you get your news, your weather. You can get a little snippet, a 15-second micro podcast from me. You can just type ‘The Aspie World’ into Alexa Skills and you'll find it, download the app and install it. One of the things we're doing is testing either one-minute clips, like a one-minute kind of podcast. Or 15 seconds. We’re trying both, we're testing to see which ones we get the best engagement on.
Lauren: That’s so cool!
Dan: I know, I love it! And the thing is, I figured out how to do this at zero cost. It costs nothing to create an Alexa Skill; it’s like a hack. I just figured out how to do it using RSS feeds. I'd love to be like the dude … you know, in the middle of the NFL when they show commercials … the guy skateboarding and advertising Nike freakin’ skate shoes. There's nobody doing it. When you see a Down syndrome model doing a catwalk, everyone freaks out. We've had loads of those. And it's great. I love it.
Lauren: And we need more of it.
Dan: Yeah, we do. We absolutely need more of it. There's no autistic people. And I just want to flagship it — not because I want attention, but because I want to prove that it can be done. One of my quests is this … I've never seen anyone do this … Men’s Health magazine, front cover, always shows a strapping, physically healthy … strong physical health, but it never talks about men's mental health.
What if the cover of Men’s Health showed a strong mental health advocate?
I emailed them and said, “You need to do this. Autism Awareness Month is coming up. You need to have an autistic strong-minded person, because good physical health and good mental health is sexy.” I want to show that. But nobody listens; it falls on deaf ears. But we're gonna do it. I'm driving forward with 120,000 people just on YouTube behind me, and we're gonna do it. We're gonna steamroll over this stuff.
Lauren: You’re gonna have your own magazine anyway. You can put yourself on the cover every issue!
Dan: (laughs) I don't want to be in it. What I'm trying to say is, I don't want to be the guy every single time, I just want to prove it can be done. It’s not like nobody's brave enough. I don’t care. Okay, fine. I'll do it. I will 100% do it. People ask me, “Dan, can you do this? Can you review that? Can you do a video on this again?” Because I'm not afraid to take those issues to somebody.
Lauren: I think that's amazing. All right, I've got one more question for you. And this is sort of a big question. We've touched on it a little bit. We’ve touched on ways the NHS, in your experience, is working for patients on the autism spectrum, right. In what ways do you see it falling short and requiring improvement? Is it about reinstating all of the cuts that have happened to all of these ASD programs?
Dan: Yes, that is one of them, funding, funding for the programs with ASD workers. That's one way. The statistic Is this: 40% of all GPs, which is your physicians … 40% of all of those don't have any knowledge of autism. So when you go to an NHS establishment, not only the doctors, the nurses and the other kind of staff … you’re looking at at a high rate that doesn’t know anything about autism. But the buildings themselves are not autism-friendly, they’re not accessible.
Hospital lighting is not accessible for autism. You're treating patients, man; one in 100 people in that room is gonna be on the spectrum.
That's the data statistics from this country. It's one in 60 in America, it’s one in 100 here. So you’ve got to think, none of those rooms are set up for one in 100 people. And the staff is not educated. So I think one of the biggest changes that the NHS needs to do is to reinstate the funding they cut for the programs they had running. They're slowly doing it; there’s a new initiative called the Integrated Autism Service (IAS) which just came out, and they're doing a fantastic job. They really are; I’ve worked with them on a couple of things. That's how I got the occupational therapy, through them. They're working really hard and I applaud them. But they also need to educate all NHS staff as a mandatory thing. I'm pretty sure I read that the government have said this has to happen now, that all public sector workers will be educated on autism. I don't know how they're going to do it. I don't know if the government will do it, but we're going to try and make them stick to it. To do what we can. I briefed the European Parliament about a month or two ago on autism. And they basically asked a similar question: what help is needed. There was a guy from the NHS there. And there was also a guy from the National Autistic Society. I briefed everybody. I know France is doing a lot actually to help now. That’s what we need to hear in the UK. So yeah, there's lots that needs to be done and there's some things that they are doing, but I think we just need to keep that pressure on really. And I know we can achieve it. By building community and strong understanding programs, we're gonna get there.
Lauren: I love that. All right, here's the fun bit. I have two Top Three Lists for you, to round out the interview. The first one … I'm wondering about your top three tips for someone who suspects maybe they've got something off. Maybe they've been diagnosed on the spectrum. What would you recommend for people who are entering this world of invisible disability? And possibly looking at trying to treat and live more comfortably on the spectrum? What would your top three tips be?
Dan: Well, the first tip would be self-love. I never loved myself. I always felt like oh, Dan, you're an idiot. That’s something an idiot would have done. Don’t. Don't beat yourself up. You be proud of who you are. Because as long as you don't kill people, you're pretty decent, you know? I mean, it takes a lot to really hate yourself; there are very few people that do. So just give yourself a bit of a break and say, okay, I love myself. The second thing is confidence. Have confidence in yourself. You can do the things that you want to do. You just have to have that confidence and the self-belief that makes you go, okay, I just need to figure out a way around it. Because everybody has the ability to do something. It's not about what you can’t do. It's about what you can do.
I always say to everybody, I'm not a Cordon Bleu chef. I wake up and I go, cool, I can make some killer toast.
I'm good at toast. So when I get up and I make some toast, I'm like, dude, this is the best toast you’re gonna see. And then the last tip, the biggest thing for me, I would say, is: Don’t be afraid to ask for help. I think one of the things I was too proud of … I didn't want to go and see psychiatrists and therapists. I was like, I'm a strong dude. I'm gonna be able to do this on my own. I'm an independent guy. No. There were certain things I needed help with. Medication? I was, like, I'm gonna be okay with vitamins. Yes, I'm good with vitamins and they definitely help. And cutting caffeine out of my diet helped, it calmed me down. A little bit. There’s still sugar and stuff, which makes me climb the walls. Honestly, you should see me on Sunny Delight; I could eat a phonebook.
Lauren: I’m imagining you on a climbing gym inside the house! (laughs)
Dan: I’m so calm right now compared to what I normally am. I would say, don't let people pill shame you. There's a lot of drug shaming. And there’s nothing wrong with it. If it helps you and you feel like it works, do it. Just do what's best for you. If you look after number one, then everything else will fall into place. Because basically, if you're not looking after you, somebody else has to look after you. You know, I mean? The other thing is, that if you're not loving yourself, then how on earth is anybody else gonna love you?
Lauren: I love that, yeah. Be confident in what can do — and go from there.
Dan: Or somebody else is going to have to build you up or hold you up. You have to just be you. Because the thing that's funny is, that you are amazing. And people just need to realize that. Everybody listening to this right now … have a sit down and have a serious talk with yourself … go, goodness me, I’m amazing. And I need to do this because Dan said so. I'm watching. I’m going to be checking up on you; there’s going to be a test later. (laughs)
Lauren: I know there will certainly be an email at the very least. So there you go! Absolutely. All right, last Top Three List: top three things that give you unbridled joy; that despite lifestyle adjustments and changes that you've made, you're unwilling to compromise on. So this could be top three guilty pleasures, secret indulgences; it could be comfort activities when you're feeling uncomfortable. What works for you? What makes you so happy that you’d never give it up?
Dan: Skateboarding, number one. And watching UFO and alien documentaries.
Lauren: Oh, I love that!
Dan: And taking pictures of mattresses on the side of the road. I know it sounds stupid.
Lauren: Really? Oh, that's so particular.
Dan: I know. It sounds crazy. I was on a run today and I got a really good one. It was like, three in a row. I find it so bizarre that people put mattresses on the side of the road, and they're always just on the side of the road.
Lauren: Well, I'm always like, ew, bed bugs!
Dan: Yeah, they’re just gross, this thing just slumped to the side of the road.
I have a huge collection of photos. Maybe I’ll do a blog one day.
I have hundreds and hundreds of pictures. And I got my friends into it. They were like, why are you doing this?
Lauren: Well, once you start noticing it, they're everywhere, aren't they.
Dan: I’ll get text messages from people randomly, a picture of a mattress on the side of the road. I’m, like, nice!
Lauren: Oh, that’s so funny. That’s Dan’s thing now.
Dan: Yeah, it is. So if you've got any mattress pictures by the side of the road, email TheAspieWorld@gmail.com. There you go. But on a serious note, if anybody wants to tweet me or Instagram me, it's just @The AspieWorld. It’s super easy, and I will talk to every single person who messages me. That's what we do. Team TAW. Everything is branded.
Lauren: Dan is showing me, he's got stickers on everything; branded with Team TAW.
Dan: Even down to my GoPro. Look at this.
Lauren: You’ve got it on everything. I love it. Well, Dan, is there anything else you want to share with our listeners before we set you free for the day?
Dan: This has been awesome, dude.
Lauren: Thank you so much, Dan. You're such a pleasure. It's so great chatting with you.
Dan: Amazing. Thank you so much.
Lauren: I'm excited to see how everything continues to grow for you.
Dan: Yeah, fingers crossed it goes good! (laughs)
Lauren: It will. I know it will. Thank you so much!