Latest / Aspergers & Autism Podcast [The Aspie World] AuDHD / Autism Advocate - Awesome UK Autistic Interview

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Autism Advocate - Awesome UK Autistic Interview · Aspergers & Autism Podcast [The Aspie World] AuDHD

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You have arrived. Welcome to the Aspy World.
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Here's where we talk about anything and everything ASD in
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an upbeat and informative way. And now here's your man on the
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spectrum, your autism ambassador, Daniel Morgan Jones.
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Guys, what's going on? Welcome back to another Aspy
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World podcast episode. Good to be having awesome guests
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on the show and hope you guys are all good and, and, and and
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doing well. We're a little bit into the new
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year now. So happy New Year to everybody
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and it's all over with. So it's not time to smash your
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goals. It'd be awesome.
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So if you are listening and you haven't subscribed yet on the
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podcast, I can see you listening but not subscribed.
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So make sure to hit the subscribe button.
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The same here on YouTube. OK, so today I'm interviewing a
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person called Gray Rogers who is the paternal nephew of an SAS
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version, which is really interesting.
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The founded the founded the swaddle.
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Coddling out, swaddling. There you go.
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I can't even say that. I can't even say it.
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First appeal like groups, right? Which is really interesting.
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You've done a lot of work with the National Assisted Society
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campaigning which shaped the Autism Act for 2009 and also
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working frontline to the pandemic.
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Bunch of other kind of crazy cool stuff.
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So great. Do you want to like just let
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let's go through it? What, what?
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What have you done and and and how did you do it?
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Oh goodness, how don't you know how to start, to be honest?
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Let's, let's talk about the Asperger society.
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Let's let's go through that. Well, that was founded by two
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other friends of mine. And we, we have, we founded it
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because the local autism support group was shutting down and
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nothing was really filling the void.
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And it just came up casually in conversation.
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Maybe I should do something. And I just took it from there,
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really. I pulled together community
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resources and things like that. And yeah, that's been going for
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10 years now. It's still going.
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It's still going right now. Yeah, it's still going right
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now. In fact, we're in fact we're
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sort of branching out doing outreach work in other places,
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in other in other regions. So yeah, it's getting better.
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Dude, I love that, like I love that, you know, there's a,
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there's a guy who lives near me called Ben.
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He's a really cool guy and he's also on the spectrum and me and
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him are setting up our own kind of, you know, social group or
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some social group locally. And so I'm really inspired by,
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by people who have done it because it's, it's not an easy
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feat to do. Like, you know, you've got to,
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you've got to organise it. And so how did you find
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organising something like this? You know, because it's obviously
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you guys would go 10 years. So it must be at some scale
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right now. Yeah, it is.
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Oh, we started out just you, you know, like any support group, we
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met other organizations doing similar things and I just sort
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of took down board. And when Tank did come to go out
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and do our own thing, we just rolled our sources together and
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they will really support about the idea.
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And yeah, we just put our heads together and took it from there.
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Really. Is it still the three core main
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dudes? Like is it you and the two other
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people who have done it? Like are you still the main core
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three people running it? Yeah, it was still the main free
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main for the Free Musketeers I had to call ourselves.
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But the Free Amigos, actually. Yeah, well, obviously lot's
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changed since then. You know, there's some people,
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you know, someone's talking about, you know, maybe, maybe
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moving on and someone else coming on board.
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But no, there's still their interest in the group.
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Good. That's awesome.
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And is it still growing? Like what's the demand like for
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something like this? Well, quite a lot.
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There's a lot of, yeah, like mental health drop in centres
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closing down and and yeah, there's there's a real demand
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for social, more social inclusion within the immediate
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community. Did you find Yeah, did you find
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a rise after the pandemic? Because, you know, the pandemic
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kind of shut a lot of things down and people were kind of
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clutching at straws to find support.
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Did you find a big increase after the pandemic?
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Oh, yeah, yeah, We had a lot of new faces when we started up
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again. Well, a lot of old faces, but
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new faces as well. And yeah, there's still, there's
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still interest in, in, you know, social inclusion and moving on
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from the traumatic events of the pandemic.
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So yeah, we're we're playing off of that at the moment.
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Amazing. All right, So I want to talk
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about the magazine Aspergers United.
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Like talk, talk to you about this.
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Like what? What is that?
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Well, it's a magazine. It was published.
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It's published. Well, it is published by the
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National Autistic Society. It's been going on for years
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now. They've changed their name
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recently to the Spectrum. But yeah, I, I contributed some
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stuff to them back when I was still coming to terms with my
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diagnosis and got some really good feedback off of that.
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And that just inspired me to do more creative writing.
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Fantastic because you did some non fiction articles for them,
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didn't you? Yeah, yeah, I did some non
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fiction for them, yeah. So and you also took part in the
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National Society's I Exist campaign, right?
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So tell me a bit about that. Well, it was another call out
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for for written pieces, artwork, you know, whatever helped you
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express and you know your experiences and that.
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And I wrote a new piece sort of going off the old piece, and I
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submitted it to them and it got published on their website for
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all to see. And I actually didn't find out
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until years late that that my piece, along with many other
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pieces, contributed to the formation of the Autism Act.
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That's incredible, dude. That's like, that is amazing.
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That is amazing. Yeah, it is.
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I didn't even know until like a few years ago, just before the
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pandemic, because the way it was worded, because, yeah, things
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had moved on a lot since then. So yeah.
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I mean, you know, do you ever kind of take a step back and go
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like, whoa, I've done a lot of things.
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Like, how does it feel like to be doing contributing so much to
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the autism community? Feels great actually, because
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yeah, I like to tell my story. Obviously it's not going to be
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seeing them as everyone else's, but you know, there are people
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out there who that sort of story similar to your own and they are
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out. Yeah, you might find it might
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take a while to find those people and riff off them, but
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yeah, we're out there. Doing your thing, right?
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I've got a question. So I read that you did some work
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for this autism information and advocacy service, right?
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Or sorry advice service, which kind of led to joining the
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Derbyshire Autism Partnership Board to roll out to the UK
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government's autism, well, the Apple Autism strategy.
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Do you want to kind of condense that into something that's more
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coherent? Yeah, it's, well, like I said, I
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ran the group for many years, maintained a very good website
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and Internet residence. So when lockdown it happened,
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there was, there was just something up there out there for
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people to look up. And it was around about early
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2021, I started getting all these emails off of people
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interested in my work for some bizarre reasons.
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So I had my first Zoom meetings with them.
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And yeah, they were, it was a doctor actually hadn't realized
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at the time, but he was a doctor.
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So yeah, she, she approached me and said, would you like to work
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with us on this partnership board and even do some
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consultation and look over some, look over some paperwork to see
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if it's accessible as well. And yeah, I just took it from
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there. Really.
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It was also around this time I, I did my first ever podcast
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interview with with Labeled. Yeah, yeah, yeah.
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Two really nice women who have gone to, yeah, gone to appear on
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ITV News and things like that. So, yeah, that was my first
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podcast interview. Yeah.
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Did you find like so much? Like you've done so much, right?
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Like and I feel like you're really humble in the fact like
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you're not like, hey, you know, look, all this stuff.
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I know sometimes I feel like I'm a bit braggadocious with the
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things like I have an award and I have a book out and all this
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kind of stuff. You're so humble in it.
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And I love that because like I don't really care.
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Like yeah, I've got my awards and stuff like that.
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Like I don't those things don't drive me.
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You know what I mean? Helping people drives me.
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And I feel like you also have that.
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But I love that you're so humble.
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You're like, you know, I just did just say you still blase
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like, dude, you like help shape stuff to help people in this
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country. It's crazy.
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Get like that. I could only have a dream of
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helping people like that like you.
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You're like 10X to me already dude, I love that.
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Yeah, I want to joke that was too humble for my own good, so
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yeah. Yeah.
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It's actually an honour to have you on here because like, you
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know, I have some really interesting, inspiring guests,
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but you know, you're by far one of the most inspiring and
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amazing people out on here. Oh, we haven't even got started
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yet. It's a story that I could tell,
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yeah. I know that's what I mean.
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I think like we could even do a bloody series on it.
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You know, I do have AI have a question.
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I have a question and you you spoke kind of about this, which
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leads into this question. I just recorded a video that's
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going to be out today, which is so when we're recording.
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This is Thursday, the 8th of February 2024.
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I've got a video going out tonight all about Hans Asperger
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and this whole controversy surrounding Times Asperger and
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the. And so I analysed the, the
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paper, the that was published, the journal, and I go through
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it. So it's a 26 minute video.
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So anyone's up for rolling up their sleeves and sitting down
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with a pot of tea, they can watch it.
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And I go through it and I feel that there is some
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unjustification for the amount of abuse that the term Aspergers
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get from the Austrian community. Now, since they changed the name
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from, you know, the Aspergers United to Spectrum.
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And they also you, you also run, you know, society, the Aspergers
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society. How, how do you feel about it?
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Talk to me about this. Like how do you feel about this
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whole witch hunt against people using the term Aspergers?
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Well, we haven't had any problems yet.
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And, and yeah, oh, goodness, I I said, I said before, history
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never happens in the right order, does it?
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But I think it's good. People are learning from it.
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And yeah, sometimes, yeah, bad things to happen.
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The best thing you need to do is learn from it.
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Really. I mean, from my yeah.
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And from my point of view back then when we first found her
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that Reapers around the time Susan Boyle came out as having
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the spurges. And, you know, we just laid off
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of that really. So, you know, when we when we
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when we were starting doing obesity and people start asking
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questions about what spurges was and things like that, we just
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said, oh, Susan Boyle's got it. So no, yeah, we that, I don't
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know if that's been part of our success or not, but no, we're
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very forward thinking and especially in the terminology we
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use in our our bank statements and paperwork and stuff like
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that. And yeah, yeah, in the beginning
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we tend to use words like vulnerable adults and stuff like
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that. But now we use words like
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neurodoverse and you know, and stuff like that.
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And we're at, yeah, we've, we've currently, we are, we are
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actually currently at consultation with a, with a,
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with a theatre artist about how, our, how our community group
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presents. And there was discussion about,
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about changing the name as well. So yeah, we're open to that
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idea, to be honest with you. Interesting.
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Look, I, I'm not, I'm not for forcing people to do anything.
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I don't think, you know, I, I don't think there's a problem
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using the term Aspergers personally, because I think
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that, you know, many people were diagnosed with it right. 2013.
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And interestingly enough, the reason it was taken out, the DSM
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diagnostic criteria was nothing to do with the information that
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was exposed on, you know, potential collusion with
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socialist groups in Vienna, right?
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It was all to do with accessing support under a different
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nomenclature through diagnostic reports.
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So it's really interesting that you've got this army of
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militants who forced people to change their names from
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Aspergers to something else like autism or special.
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And I, I feel like, yeah, I could go on about it for, for a
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long time. And I think there's a lot of
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kind of like bullying that happened in the community.
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So I was wondering how you how you, what your take was on that.
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I won't change my, you know, I'm still label videos Aspergers.
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I'll still label my, my brand Aspy.
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Like I'm not changing that. Like there's no need.
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You know what I mean? Do you agree, or do you feel
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like you need to change it because it's interesting?
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Well, there's well, there's, there's always going to be
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reasons to update names and things like that.
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I feel I think the important thing is just to be, you know,
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forward thinking, you know, respect the opinions of the of
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the people. And yeah, some people do, you
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know, weaponize their causes and use it and as an excuse to bully
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other people into their way of thinking.
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But that's not, that's not, that's never going to, it's
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never going to help anything. That's just going to still
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presentment and reins of force negative stereotypes and stuff
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like that. So, yeah, if if we do, if we do
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well, if we do change our name, it'll be for a very good
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consultation and other reasons. We'd we started taking the the
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apostrophe thing, called out the out the name Asperger's because
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so it wasn't really a name. It was more of a term.
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So it wasn't really referencing a person.
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You know, is Yeah. Give the term, yeah, you're
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right, the term Asperger. Even the way isn't yeah, even
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the way you spell Aspergers is is different.
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Some people spell it yeah, just as it is or, or I've named as
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in, you know, Parkinson's, even though I think it's funny when
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your name conditions after. After a person.
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After a person, Yeah, because. If person doesn't have it, you
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know, apart from like, you know, there's one the, what's the, the
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AL the ALS guy, the baseball player, you know, he, he that's
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named after him, isn't it? Oh, well, they, they call, they
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nickname it as ALS, but he's got another name, right?
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I can't remember the guy's name. It was me telling you it's named
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after this guy. I can't remember his name, but
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yeah, the, the guy. So they call it the syndrome
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because it's, he was like the first guy, I think Luke, Luke
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Gehrig or something like that. His name was Lou Gehrig's
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disease. They call it Lou Gehrig's
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disease, but they it's called ALM, right?
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Which is like ALALMALMALS, the ice bucket challenge things.
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Remember all that when everyone was dumping?
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My sister. My sister did that.
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Yeah. Yeah, I just.
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Yeah, Yeah. So we we did it and we don't get
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a bunch of money to ALS. And you're always interesting
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about that. That was one of the most
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impressive social campaigns or viral social campaigns ever
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because it spread like wildfire from celebrities to everybody.
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And the money that everyone donated actually was used to
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find a cure for Lou Gehrig's disease.
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Like it? It worked like all the space of
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like five years or 10 years. It it opened.
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Like honestly, blue my I was like, holy smokes.
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Like this is like not just impressive, like ridiculously
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cool. OK, so.
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I'll have to. I'll have to tell my sister that
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because I don't think she even was that.
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She did it years ago, but I'm just remembering it now.
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And yeah, I think I'll tell her next time.
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Yeah, it's all it really, really good.
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I mean, just just just incredible, you know, excuse me,
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I'm being a part of that was just like, wow.
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OK, so talk to me about what, what are you up to?
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You know, now what, what's your, what are you, what are you
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involved with now? What, what's your new projects?
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What are you aiming towards? Like get me up to date.
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Oh, goodness. So what have I?
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What have I told us so far? Yeah, like I said that I, I
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became a trustee on the Autism Partnership Board, which is only
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possible because of the magic of Zoom anyway, because
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Derbyshire's quite a rural country and there's parts of
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Derbyshire even I've never been to because it's very rural
16:05
community. But I think it's good that they,
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I'm very tech savvy as it is. So it's possible for someone
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like me to do that kind of stuff now.
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But not long after that people express who actually did the
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Copa production with for many years.
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They actually asked me to come and do a be a trustee on their
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partnership board based on my work with just them.
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And I accepted and I've done that for, for 2-3 years now.
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So I'm in the I'm the neuro diversion voice on board and
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talking about, you know, how we can bring arts to the community,
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make it more accessible and how to be forward thinking that
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yeah, you learn on the jobs that I'm learning to be more
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progressive, more forward thinking and.
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I love it, I love it. Yeah.
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And we do talk about, you know, yeah, I mean it, what people are
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feeling and stuff like that as it is.
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That's really cool. One of the interesting things
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about you is you're male presenting non binary and
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identifies as neurodivergent. Do you feel that there's a link
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between gender dysmorphia or gender, gender identity crisis
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or I'm not entirely sure of the technical terms yet and
17:23
neurodivergency? I think when you're near a
17:29
divergent, you struggle with imposter syndrome as it is
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because when I was first diagnosed with autism, it was
17:37
back that time when people were like, well, you don't look
17:39
autistic or or everyone's a bit autistic and stuff like, yeah,
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So that yeah, I think, yeah, I think, I think when it comes to
17:49
identity, it just all of us down to stereotypes and cultural
17:54
norms and and things like that. And so I didn't inspire me to
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dig deep and really think about, you know, how I related to the
18:04
world. And yeah.
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And I've been fans of the things in the past to just some people
18:11
would say we're girly, well, just for girls and stuff like
18:15
that, even though I didn't quite understand why.
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So I just sort of dug deep and reached the conclusion I was a
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non binary. Interesting, but can that so
18:27
because I'm confused, like I don't actually know what that
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means. I mean like because you've put
18:31
down you say male presenting non binary.
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What what does that actually mean?
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Like what? Because can you just be a guy
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who likes girly things? Well, I've tried that.
18:41
I've tried, but of course bullying and things like that
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and people saying you're not a real man and stuff like that.
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What's wrong with people? Yeah, exactly.
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Yeah, they look crazy. Exactly.
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That's yeah, it's, yeah, it's more fragmented nowadays, you
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know, identity and who you are and stuff like that, I feel.
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You should be able to just do what you want.
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Like like, you know, I don't, I don't really care.
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You know who people fall in love with how many people who want in
19:06
a relationship, you know, I really don't care, you know,
19:09
because those things don't bother me.
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It's it's how you treat people and and and what you do for the
19:13
world that that bothers me. So I just had a releasing.
19:16
So I'm not I I'm a little bit in the dark about like stuff like
19:19
non binary. I don't really know what that
19:21
means and but I have seen a lot of talk between a lot of people
19:25
in the autistic community saying, Oh, it's very common in
19:28
the autistic community to have this kind of like gender thing
19:31
like this. You know, I don't know, I don't
19:33
know what it's called like, but I don't really know much about
19:35
it. But it was just interesting that
19:36
you you put that down on your on your bio, but do you find
19:40
yourself, you know, advocating for those things as well, those
19:45
kind of like societal changes as well as, you know, being like a
19:49
neurodivergent consultant? Are you like this non binary guy
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that does this stuff? You know like how does it work?
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I just datificate from from my own conclusions.
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And yeah, I see people out with similar views and, you know, I,
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I listen to them, I learn from them.
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I I think about what they've said, take that on board and
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reach my own conclusions. Yeah.
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Because yeah, that's, I think there's a secret of a good
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discussion, I think. Yeah, I think so too.
20:19
Yeah. It's really interesting because
20:21
I'd say that you're quite a manly guy.
20:23
Like I wouldn't say, I wouldn't say that you're you're not a
20:25
manly guy. You seem manly to me.
20:27
Yeah, by 9 by 90 standards. 90s Hey, 90s was awesome, bro.
20:32
You talking about what? Tamagotchis slime, you know,
20:37
like it was great, Yeah. Yeah, yeah, yeah.
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I look the most. It's changed a lot since before
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the COVID, you know what I mean? Yeah, I did a lot of like ginger
20:47
in the pandemic, so I think a lot of people did, but I did,
20:50
yeah. I wasn't immune from it either.
20:53
Yeah, it was a hard time. It was a hard time.
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Was it hard to advocate for autistic people during a time
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when you couldn't actually put anything together socially?
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You couldn't, you know, you can, I don't know, meet up anywhere.
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You couldn't assemble anything. Like was it difficult?
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I had a support bubble I could look after.
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Also, I wore my sunflower land yard during the island and was
21:17
working. So I was still, you know,
21:20
raising awareness about, you know, hidden disabilities and
21:22
things like that even during the even during the lockdown period.
21:28
Interesting. Yeah, because I remember having
21:30
that I had the sun fell out on the as well.
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And I had to use that to go to the grocery store to buy like,
21:34
you know, groceries, obviously. But like it was, it was so
21:38
important that I wore that because of the oh, it's just
21:41
mayhem, wasn't it? It was just, it wasn't good.
21:43
I don't want to. I don't want to lift one of
21:45
those again. You know.
21:48
And just the whole yeah. And it was, it was, it was a lot
21:51
of pressure anyway. So what's what, what are your
21:54
prospects for the future before we before we end this episode?
21:56
What, what are you wanting to like?
21:57
What are you wanting to do? What do you want to achieve with
21:59
autism advocacy in the future? Like what?
22:01
What was your goals and dreams? Well, I didn't.
22:05
Well I was diagnosed with autism at the age of 20, so it wasn't
22:09
like I had goals or dreams. Well, I did, but they changed
22:13
even back then that I I just, I guess I just in the recent
22:18
years, I just said I'll use what whatever power and skills I have
22:22
just to raise awareness for other people.
22:27
There's yeah, there's many people who still don't still
22:30
don't understand, you know, they're all that that arcade and
22:34
all that old arcade and old fashioned, you know what I mean?
22:38
Yeah, yeah. I'll keep using my voice.
22:43
Well, I say voice, but whether it's in writing or on blogs or
22:50
1:00 to 1:00 to ones, Yeah. So yeah, I'm still.
22:53
Yeah. I'm just going to keep doing it
22:55
because I know what it feels like to, you know, be invisible
23:00
to people, have people think the worst of you and all that kind
23:04
of stuff. So yeah, I'm just going to keep
23:07
talking about why my lived experience they call it now.
23:10
So yeah. Dude, you're a great person and
23:13
I really, really appreciate you coming on the show.
23:16
If people want to kind of check out what you do, do you have
23:18
like a website that they could visit or anything like that?
23:21
Yeah, yeah, we have, Yeah, we have a website, The Swelling
23:24
Coat and Spurgeous Society or SAS as we just call it.
23:28
Yeah, you can just Google that. I can send you the links later.
23:32
Yeah, I they are. I also do Instagram and Facebook
23:35
and things like that. OK, cool.
23:38
So if you send me over the links, I'll put them in the show
23:40
notes. I'll put them in the description
23:41
of the video. So people, if you want to check
23:43
out Grey's work, yeah, definitely check it out.
23:47
They're doing amazing work. And and I, I thank you so much
23:49
for for being a guest today. Awesome.
23:51
That's a really good message. Thank you so much for being on
23:53
the show. Yeah, I've really enjoyed my
23:55
time here, Yeah. Amazing.
23:57
Thank you Grey all. Right.
23:58
Thank you so much. Hey guys, thank you so much for
24:03
checking out this podcast. Make sure you are subscribed
24:06
because there are people listening right now who are not
24:07
subscribed to this podcast. I can see you.
24:10
Make sure you subscribe, OK guys.
24:11
See you in the next one, Peace.