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June 4, 2025 48 mins

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Slow conversations that we have about our own autism with lots of silences. (edited out here)

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Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
Hi there.
Every Sunday a group of autisticpeople get together and drop in.
It's an informal group.
Um, but some of the things thatpeople say deserve a bigger audience,
so they give us permission for usto put them in a an edited reel.
And that's what we are here for today'sedited reel of the conversations

(00:23):
that we have about our own autism.
Cheers, enjoy.
We speak our words, we listen,we speak our words, we listen.
We speak our words.

(00:46):
We listen.
We speak our words.
We listen.

Jules-AutisticRadio.com (00:49):
Hi Nicola.
I started the recording Michael's droppedin, I think you were there last time.
Michael was in I met him recentlyagain at the neuro convergence,
I think it was conference 2025.
So it jogged his memory that we were here.

Michael (01:09):
Yeah.

Jules-AutisticRadio.com (01:12):
Speaking

Michael (01:12):
to Harry yesterday.

Jules-AutisticRadio.com: Long overdue catch. (01:15):
undefined

Michael (01:19):
It was quite for to run into at the conference a long day.
But Sunday have been a problemfor me for the last two.
Wasn't there?

Jules-AutisticRadio.com (01:38):
Oh no.
Michael don't get the feeling.
It's the whole point of the dropin is people can drop in once and
then drop in a few years later.
We tried to make it the absolutething that it's a no obligations deal.
We learned very on fromone of my mentors and.
He was expressing that one of the realdifficulties if you are autistic is

(02:01):
feeling as though you overstep somekind of rule or you break some kind of
law and you get excluded in some way.
And it's a real tough thing whenthat happens to autistic people.
So all the principles aroundwhat we do at autistic radio are.

(02:21):
People can fuck up, but they cancome back and have another go.
It's as far as the dropping goes,you just drop in, you drop out.
It's really, remove as muchpressure from people as possible,

Michael (02:34):
thanks for the explainer.
Yeah.
I should know from the group I formedback in the early two, which I met Harry.
We called it the dialogue group.
We sat around a roundtable in a round room.
So it and then the whole purposewas to get dialogue going

(02:58):
except it was face to face.

Jules-AutisticRadio.com (03:00):
Wow.
That's really cool.
You are a pioneer out there, man.

Michael (03:04):
And I appreciate how.
And then Harry took over for mewhen I needed a break and I needed a

Jules-AutisticRadio.com (03:13):
good job.
Yeah.
The only thing that

Michael (03:17):
brought the group to an end was the people who gave us the space.
They lost their fundingand so we were all out.

Jules-AutisticRadio.com (03:30):
That, that's definitely the thing about the online
groups is they can be run on a shoestringas long as people have got the will.
As long as the, the group is willingto volunteer and actually make
it a regular thing, you, it canbe done on absolute shoestring.
Whereas in person isrestrictive in loads of ways.

Michael (03:54):
Sometimes though it's nice to see people face to face.
And have a good old fashionedblather like other people do.
And with someone like Harry inhis sense of humor, it was great.
Perhaps it's an interesting thingto, when we're talking about online.

(04:17):
What do people expect from online andtrying to build a community online
and get dialogue going that way.
Anybody got thoughts on that?

Jules-AutisticRadio.com (04:30):
Do you mean from a networking point of
view or the experience of using it?

Michael (04:36):
I think from the experience of using it, how do
you get conversations going and.
Sustainable in an online environment.

Jules-AutisticRadio.com (04:48):
It's personal kinda space, but recently I've just

Raymond-AutisticRadio.com (04:52):
been admitted to a group on, close
group on Facebook, and I'm tryingto trigger certain conversations.
We'll see how it.
It might not be thekind of space for that.
So it's all about territoryand terrain and reading the
lay of the land as it were.

Michael (05:12):
Could you extrapolate a little more on what you mean

Jules-AutisticRadio.com (05:15):
by territory

Michael (05:17):
and such to people?
What does it take to makepeople feel comfortable?

Jules-AutisticRadio.com (05:24):
Okay.
I'm not sure if I'm answering a questiondirectly here, but I'll tell you a kind of
feeling of experience about online groups.
Because when I was first looking into myown autism I did experiment with going out
and looking and seeing what was online.
And what I tended to findwas a kind of clique idea.

(05:49):
Where people had their ownsilo of like-minded people.
It was almost like joining a party wheneverybody else had already got there and
they had already decided what the gameswere gonna be, how everything went on,

(06:10):
what the music was and anybody joining in.
Needed to conform.
And a lot of the conformingwas about how you expressed
yourself, what ideas you had.
And I think everyonehad a different flavor.
But I didn't find them a verycomfortable place to even try and start a

(06:32):
conversation with somebody in text format.
It was it reminded me of the old days ofbeing on the on the, before the internet
sorry, be after the internet and beforethe worldwide web, the chat rooms there.
The text-based stuff was veryaggressive and banty and very fast and.

(06:57):
Tricky.
And I found that around that kind offeeling around the autistic groups.
Personally, I have

Raymond-AutisticRadio.com (07:05):
autistic friends that I wish were online,
but they're more into personal kindaphysical meetings and socializing.
And because of that, it's verydifficult to maintain a kind
of internet presence with.
Rapid dissemination information,

(07:26):
text on your phone.
You can send messages instantly toeach other about stuff and respond.
Although sometimes when I senda lot of messages, sometimes no
response 'cause a person's way outdoing stuff in the real world and
sometimes wish that they were online.
Set things up that are almost likechronicled in a sense of you can go

(07:49):
back and look back on it and, pickup threads of the conversation again,
which out there in the wild world, thewild west is very all over the place.

Jules-AutisticRadio.com (08:02):
I think for me it's the format.
I can't deal with textonly, it's not my format.
And I can't deal withthis online video format.
I would much prefer to haveexactly what we have here, which
is a a group conversation, almostlike a group telephone chat.
But we are in comfortable places.
That, that's where I am.

(08:24):
Nice.
And.

Raymond-AutisticRadio.com: But to me this is online too. (08:26):
undefined

Jules-AutisticRadio.com (08:30):
Yeah.
I'm putting it forward as oneof the versions of online.
It's the one that fitsme, the others don't.
I can't negotiate them.

Raymond-AutisticRadio.com (08:36):
How do you negotiate real world
where appointments are made?
No.
Online or internet relationship at all?

Jules-AutisticRadio.com (08:48):
I don't do a lot of socializing in the real world.
That's basically it.
I also noticed there's a bit of athing going on with your sound Raymond.
Sometimes it's loud and then it changesto soft and the other way around.
And it's hissy as though the, asthough, almost as though it's because
you haven't got headphones on.
Maybe the settings aren'tright to overcome it.

(09:09):
I don't know.

Lucy-AutisticRadio.com (09:11):
Okay.
Just I've been sitting waiting, butI'll probably say what I was gonna say.
I actually was looking for kind of anonline forum type thing to talk about my
autism when I got to that certain placewhere I really needed to talk about it.
And I got in touch with a lot of people.
I, my husband helped.
We went through, I waslooking for groups like this.

(09:34):
And just really shut off emails to lotsof different people, and some of them
were really, it was, it seemed like it wasgonna be too much effort to be part of it,
or, I didn't really like their attitudeor, so I tried out a lot places first and
then felt comfortable with this becauseof the, probably the fact that it's

(09:54):
really non-committal and the more I'vedone, the more comfortable I am with it.
I like to do Jules, I don'tsocialize in the real world.
This is my socialization.
And so I feel like I'vegotta get it right.
I've got to find a space that fits me,suits me is going to not be something that
I feel, oh God, I've gotta do that again.

(10:14):
I, and this is my cup to a place now.

Jules-AutisticRadio.com (10:18):
I was out in the real world this week.
I had a hell of a day.
I, I went to an all day conferencethat Michael was also at and I
also straight after that, I didan online joint presentation book
presentation with Dr. VirginiaBoval, the one that OBE by the way.

(10:40):
The one who doesconversations with the Dr.
Ryan, Colette, Ryan the twoof them do a podcast with us.
And she was down there at thisuniversity that was some kind of
specialism in the research into autism.

(11:00):
So it was one of their events fortheir faculty to be invited to,
and she was presenting her book.
And I was ahead on a screen,but the video didn't work.
So I was a voice on a screen andand we had a conversation there.

(11:22):
And then after that I, in the evening,that nine o'clock in the evening, there
was an online presentation for theeducators, this worldwide group nine,
which I think Ray's been to before.
And.
On that, there was that Kieran fellow,the guy that writes books, talking
about not only his new book, buta lot of stuff to do with autism.

(11:46):
It was a hell of a day.
But if I think about the whole ofthat day, very little of that day,
even though I was networking at thisconference, was actually in person
with people, almost all of it feltalmost as low as online, testing.
Just test the mic here.
Oh, that sounds super.

(12:06):
Yeah, I missed that link you sent

Raymond-AutisticRadio.com: the day after the event. (12:08):
undefined
Thursday went nowhere for me.
It's oh, I think it was Friday, that link.
But yeah, I've been totheir meetings before.
Yeah, that group, it was oneof the people that used to come
into the chat involved with nine.

Jules-AutisticRadio.com (12:24):
Yeah, she is.
Karen, she's a teacher ina school board in Canada.
Karen, Tim.
We did a podcast with her.
In fact, at that meeting she mentionedus she, she, mark marked me out and
said, I know that Jules is here listeningto this, and he did this and whatever.
So yeah she's encouraging us.

Raymond-AutisticRadio.com: Yeah, Jules is lurking. (12:46):
undefined
And I noticed you were in theEmbrace Autism Group on Facebook,
which given that you hardly useFacebook, it's at least you're there.
We'll see how that goes.

Jules-AutisticRadio.com (12:58):
Yeah, I haven't popped in for a while.
Autistic knowledge developmenthad me do a one hour presentation,
one of their early ones.
More recently they did onewith the bakeoff chef, I think.
Master chef, I can't remember which shewon who then came out as autism autistic.
So it's one of these things in the pressthat she's been in a reality tv, she's

(13:20):
now got a career and she's also autistic.
So she was there as a bit of a celebrity.
The last time

Lucy-AutisticRadio.com (13:27):
I actually have to do a presentation next Sunday
afternoon, so I might not be here for the.
That we were talking abouteverybody's experiences is basically
a kind of extension of what I'vebeen doing with this other group.
But they've brought me onto a thing,which is like a, they're trying to

(13:47):
build a community, like a group sortof thing for local autistic women.
And I've been asked to do a 10minute presentation to them about
my own autism, my own journey, myown discovery, how it felt to get a
diagnosis, why I think it's important.
And I've been working very hardtrying to put 51 and a half years

(14:10):
worth of experience into 10 minutes.
I'm mostly failing at thatpresently, but we'll see how we go.

Jules-AutisticRadio.com (14:19):
Yeah, it's one of those edit things, isn't it?
You just have to pick maybethree things you want to get over
and just try and explain them.

Lucy-AutisticRadio.com (14:28):
Picking the things I think is the thing for me is
that things keep popping into my head.
I've, I think I've probably editedit about 50 times since I started it,
and I only started it two days ago.
I've got a kind of focus, I knowwhere I'm going with it and what
they're trying to get out of it.
I'm trying to read their minds alittle bit as to the tone of it.
I know that there are gonna be otherspeakers, but I'm the opening pitch.

(14:50):
Do we call it a pitch?
Yeah.
Okay.
It's a pitch.
But I'm gonna be the opener forit, doing the first 10 minutes
which I'm not, I'm unhappy about.
I think that's a good thing.
Being first on is betterthan being lost yeah.
I'll be alright.

Jules-AutisticRadio.com: You'll smash it, Lucy. (15:04):
undefined
You'll smash it.

Lucy-AutisticRadio.com: Oh no, I know I smash it. (15:08):
undefined
I'm not gonna be shy about that one.
I will get there and, but I know thatwhatever, even if it goes a little bit
right or whatever, I'll come out feelinglike I've done it and then, and that's
always a little bit of a glow in it.

Jules-AutisticRadio.com (15:24):
That may have sounded a bit cocky.
Sorry, I think Joe, off to the
Oh, you're right.
As well.
Yeah.

Raymond-AutisticRadio.com (15:33):
Okay.
Sorry, Michael, cut in on you there.
Were you coming in yourself?

Michael (15:39):
Oh I'm just responding to what Lucy said, made a
remark about being cocky.
I didn't think so at all.
And certainly doing opening remarksis better than doing the last of
the day when everybody's sliding.

Jules-AutisticRadio.com (16:02):
It's a waiting game that like, I hate,

Raymond-AutisticRadio.com (16:06):
that thing online where you have to put a hand
symbol up saying that you're waiting.

Michael (16:12):
I find it's become even worse since AI has got involved in
things like Zoom because all of asudden I get a hand coming up on my
screen and I haven't done anything.
It's just cameras picked up thatI, my hand in front of my face.
It's the only way I can figure whattriggered the hand to come up on screen

Jules-AutisticRadio.com (16:36):
exit saying that GRS having problem,

Raymond-AutisticRadio.com: the whole experience here. (16:40):
undefined

Jules-AutisticRadio.com (16:43):
You're on your phone, are you or your laptop?

Lucy-AutisticRadio.com (16:48):
Your sounds kind a bit the same.
Roman, you're doing the same thingagain, so it's loud and then going
quite quiet and then booming again.
So I dunno what's going on.
Maybe we're all having difficulties.
I dunno.

Raymond-AutisticRadio.com: I'll just test it again. (16:59):
undefined
Luc, I'll speak directly, medirectly into the microphone.
And this is me wandering off tolook out the window and not speaking
directly into the microphone.
Does that make a difference?

Lucy-AutisticRadio.com (17:15):
Not a heck of a lot actually.
I dunno, it's like when you start itit's quite loud and then it settles.
I can live with it, but,

Raymond-AutisticRadio.com (17:23):
ah, there must be a problem at Central.

Nicola-AutisticRadio.com (17:27):
Yeah.
It doesn't sound like it'sanything that you're doing wrong.
It sounds like something in the system.
I.

Raymond-AutisticRadio.com (17:34):
I did change a setting or two last night because
Windows has been really naughty.
Microsoft has been very naughtyand taking over the entire
system due it's edge browser.
And so I was trying to figure outhow to remove certain things and
I may have clicked something to dowith my sound, but I don't think so.

Jules-AutisticRadio.com (17:54):
Yeah, you sound was really consistent that time.
Yeah.
It's not doing what he was doing earlier.
It's not as clear asit normally is though.
It sounds there's a possibility.
It's coming out the laptop micinstead of out of the plugin mic.

Nicola-AutisticRadio.com: I socialized this week. (18:15):
undefined
I spent time with people just for thesake of spending time with people.
And what I did was just go I'monly gonna have to do two hours.
And so I did.
When it got to two hours,it was like that's me off.
And it felt really nice actually.
Like I wasn't really burnt out.
And we'd had a good time.

(18:35):
And Kelly, I think there was a few folkwere like, oh, are you going already?
But.
They weren't, didn't seemcrossed or anything, so I
thought that was a bit of a win.
I would be

Lucy-AutisticRadio.com (18:48):
so lost.
So I find that so very difficult.
Is that a strange, I can't get the conceptof that because I'm always thinking
about the exit even before I arrive.
And I'm always the door.
This is why I'm so rubbish.
Planning my retreat before I'veeven advanced on a situation.

Raymond-AutisticRadio.com (19:10):
I think it's the number of people
involved that creates intensity.
And whether, and of course, like whetheror not you feel you're in control.
'cause I was out socializing foran, I was out there with an autistic
friend and we were on a mission.
And the people we met werenot exactly, neurotypical.

(19:31):
The market itself was full, colorfulcharacters, so it was noisy and but
I just kinda zoned out and I knewwhere I was going and what I was
doing and what the time schedule was.

Nicola-AutisticRadio.com (19:45):
Yeah, I think what I, what made it, what,
what made it worth it for me as wellwas like, there was three generations
there as well and it's like friendsthat are mats, our chosen family.
And so my kids were not the youngest.
There were some younger ones thereas well, but my mat who are like
that really fun age for littlekids to play with who they're just
delighted with these big ones, paythem attention it was almost more like

(20:07):
theater than like normal socializing.

Raymond-AutisticRadio.com (20:12):
I take it was nearby as well, Nicola, because you
wouldn't need to like get in a car andorganize a trip, it'd be just turned up.

Nicola-AutisticRadio.com (20:21):
Yeah.
I was home 10 minutes.

Raymond-AutisticRadio.com (20:25):
That's what I consider normal is like.

Nicola-AutisticRadio.com (20:28):
It's quite a good reason I think to have
a dog as well is 'cause if you'reout and about, you can always be,
oh I need to get back for the dog.

Jules-AutisticRadio.com (20:37):
Oh dear.
A white lie.
Excuse
a white lie excuse, eh.
The thing I'm enjoying aboutNicholas thing, I. Almost observing
it happen as a, as theater.
And I get that and that, that tickles me.
On a practical level, if you had it inher mind that, yeah, I'm gonna go and

(21:01):
do this, it is gonna be this kind ofsocializing and I'm gonna do two hours.
So it had a finite kind ofthing as far as I understood it.
So it was a. A manageable chunk.
Quite a big chunk for a lot of people.
But then I suppose, 'cause it's alot of family and kids and stuff
it probably makes it easier on it.

(21:22):
But yeah, quite a big social chunk, but amanageable chunk for her that she chose.

Nicola-AutisticRadio.com (21:29):
I was worried about going all weekend, and anytime
I thought about it, I was like, oh no.
So I was avoiding it, avoiding thinkingabout it and avoiding confirming I would
go and on the day, even in the morning,I was getting like the no feeling, but
then I got a little bit momentum upthrough the day, like managed the, some
of the stuff I had to do for the kids.

(21:49):
And then I was like, I could do two hours.
And I imagined how nice it wouldfeel to come home, put pajamas on.
So I did it and I think it waslike, I did probably be like to
the kids, oh, do you wanna go?
We could just come back home.
And because they were likeyeah, that'd be great.
We'll go.
It made it a bit easier to get thatpush to get out the door because I

(22:11):
really am quite content just stayingat home and like exploring things
that I'm finding interesting and doingthings that I wanna do and being very.
Self

Raymond-AutisticRadio.com (22:21):
Nicola, did you get that after event Buzz self-contained?
You were talking there briefly about it,like you, how good you'll feel when you
get home, but also of that sense of likemission accomplished, but also there's
this thing I find where like when youpush yourself in it, the unfamiliar.
Unexpected things happen andthey might not be up too much.
They might actually be a wee bitdisturbing at times, but sometimes

(22:44):
they're very positive and they arethings that can change your life.
Almost just meeting somebody differentperhaps or something turning up.

Nicola-AutisticRadio.com (22:54):
I think I just felt I think it was mostly just the
same sort of feeling as I get when I'vedone something that I like met a goal,

Raymond-AutisticRadio.com (23:02):
I used to have all these built in rewards,
especially back when I was a smoker,that was kinda like the instant one.
It's oh, just get outta herefor five minutes and have a fag.
But then there was the other oneswhich were like once this is all over
and just go home and just zone out.
Forget it all or get home from work even.
It's just imagine decades anddecades he'd behaving like that.

(23:25):
Wow.

Jules-AutisticRadio.com (23:27):
I had a period of time where I would get through
the day on a kind of in lots of waygrudging way because it was to do with
work and having to deal with peopleon the basis that when I got home I

(23:47):
could not only have a hot bar, but Icould have enough alcohol to numb me.
And in the first half an hour of gettinghome I would take 10 units of alcohol
within a very short amount of timefollowed by probably another 20 units of

(24:10):
alcohol within another hour and a half.
So this kind of.
I'll have a reward laterway of figuring stuff out.
Might have some there's alsoa question of being yourself.

Raymond-AutisticRadio.com (24:26):
The goal of getting through things and getting home.
It's so she can go home and be yourself,do your thing, but very often we don't
even know what that is because in asense, as you've just mentioned there,
it's a numbing process we go into orsome kind of like alternate reality.
To a lot, to certain, can'tthink of the phrase here, but

(24:48):
that is possibly who we are.

Nicola-AutisticRadio.com (24:53):
Only someone in the chat, she, that they used to drink
ridiculous amounts of booze to socialize.
I remember that from when I wasyounger as well, like drinking to soc,
socialize and drink before I went out.
So that I. Socialize and now I just feelreally sad that I felt, I thought that was

(25:14):
like necessary and I really wish I couldhave given myself some better guidance.
I feel like
if I'd listened to my intuition,maybe I would've just accepted
that that kinda socializing wasn'twhat was gonna make me happy.

Michael (25:32):
When I was young, I used to hang out with a I was
involved with a rugby club.
Nobody noticed if you're drinking or not
blend in.

Lucy-AutisticRadio.com (25:46):
I just, one of the things I've been considering
this week, my, my long last socialcrutches that I used to lean on,
because I've been doing this a bit ofwriting and trying to gather together
how I've coped over the years withthe different situations I've been in.
And alcohol was like the biggie andsmoking was the biggie because it

(26:06):
got you outside the venue for a bit.
And you could, it was moreisolated to be on your own.
And, maybe dabbing a little in,in, in substances that probably I
should have been taking as well.
And I just realized how these thingswere just, they had to be in place
before I could really get the courage up.
And yeah, I feel, feelsorry for the younger me.

(26:27):
'cause I obviously, I wasn't awareof my autism, so I didn't know
that's what I was covering over.
And I thought it was just a lack of being.
Able to socialize.
I thought I was just a socio folk and Ididn't try hard enough, so I thought maybe
loosening myself up would be the thing.
Turns out it really wasn't, butand I'm now tto it's all gone.

(26:47):
But yeah, that was, it was a big,

Raymond-AutisticRadio.com (26:48):
sorry, something gone say something.
Anyway, I'll just put this in.
I really miss the social scene aroundhash especially during the 1980s.
It really was an alternative kindof society, and I'm not gonna
glamorize it or romanticize it or sayanything about it was good or bad.

(27:09):
It just was.
And if that kinda social lifecould exist without say using
substance, it would be great.
But I think it really is of your age.
It's to do with your twenties, Ithink, when you're not too serious
about your major commitments in life.
You're wondering about and beingvery social, so that kind of

(27:30):
alternative reality was great.
Like sitting around a kitchen tablefor most of the day talking utter
crap was really great, and goingfor huge walks and, it was just
such wonderful stuff going on.
It wasn't all drug induced.

Nicola-AutisticRadio.com (27:47):
Someone mentioned like smoking and I've
been finding some of the researchabout nicotine and autism.
Pretty interesting.
Seem to have a really calming effect anda really good effect on the gut as well.
Yeah, there's some quite interestingstuff to read there, but they would
of course be encouraged and usethe, using like a nicotine patch or

(28:10):
something like that rather than smoking.
But yeah,

Lucy-AutisticRadio.com: I vape and I still do. (28:16):
undefined
I haven't cut that out yet and I don't,but my thing was with nicotine and what
I found is I liked the first cigarettethe day 'cause it gave you a head rush.
And then during the day itwas more calming, so it seemed
to have its place every day.
Especially when I was workingthe NHS, it was very stressful.
I was chain smoking, I was outsidelike crazy, like outside the surgery,

(28:39):
smoking, and I just found that wasthe only thing that I could go right.
That, that, that's my little thing.
That's what I'm gonna do.
That's how I feel.
Better

Nicola-AutisticRadio.com (28:49):
evening.
Somebody in the chat sayingsmoking is ritualistic.

Raymond-AutisticRadio.com (28:54):
Yeah.
What you were saying, ally, if you'rerolling psychiatric institution
papers, some of them schizophrenicand the amount of smoking that went
on was almost unreal, constant.
And there was a lot of theorieseven back then, decades ago
about this the connection betweennicotine and people with certain
conditions, as a common measure.

(29:17):
Because it's obviously anatural drug in a sense.
It has been used by certain indigenouspeoples for various reasons.

Jules-AutisticRadio.com (29:24):
Yeah.
I've seen that many years ago.
I used to go to a lot of kinda

Harry-AutisticRadio.com (29:34):
groups, support groups and mental health.
And the big thing about it wasn'tjust going sell me a tip, a cup of
coffee, a cup of tea and a biscuit.
It's somewhere to sit and smoke.
And I actually went to these groupsnot long before the smoking ban.
And when the smoking ban came in,it kinda nail the coffin for some of

(29:58):
these groups because people had to.
I don't get me wrong, I'm not a smokermyself, and I wasn't a big fan of smoking.
I still, I'm not a big fan of smoking,but I can see how that sort of culture
change would have a major impact.
And then, when a lot of people,when they're out socializing or

(30:19):
going somewhere, it's like itwas so normalized for so long.
And then they're saying now youcome across if you're a smoke pest
or you're smelly or whatever, and.

Jules-AutisticRadio.com: Which is not nice to see. (30:31):
undefined
A friend of mine was a smoker and we

Harry-AutisticRadio.com (30:38):
used to go at the pub on a regular basis.
And the amount of times he wentoutside for a smoke was, incredible
because he was a sort of personthat had issues around anxiety.
Suddenly and all that.
It was just something that, a kinda lifeexperience just put that on him when

(31:03):
it was lifelong and then it turned acycle away with actually panic because
smoking caused this and it that.
But my point is it's like Iused to go a social place.
This a friend, he used tohave to go outside because he
need to smoke that many times.
Although there was another option togo to a beer and be preferred this

(31:25):
particular pub at the time, but itjust shows you the, how much the kind
of social side of things has beenkinda held off as such from the rules,
even though I'm not a big fan of itmyself, because I'm not a smoker.
I do understand the other side of it,and I also understand the addiction side.

(31:47):
Because I'm addicted to other thingsmyself, like caffeine, for instance.
So I can, I totally get, you know howpeople would be so frustrated as well.
I can understand that comment people,some people believe that the smoking ban
was an attempt to destroy the creativeengagement of working class culture,

(32:08):
even though it sounds paranoid the waythat our society is just in UK culture.
The capitalist sort of thing and how trythat approach been a wouldn't surprise me.
Even though it doessound brutal and I don't

Jules-AutisticRadio.com (32:24):
think if, yeah, it would certainly feel that way.
'cause a lot of thinking backto places I used to go, and this
is me talking as a non-smoker.
I can remember

Harry-AutisticRadio.com (32:37):
a support worker to take us to a community
center, which at the time had acoffee and sat there and had a lunch.
And there was a nice, sweet environmentand there was people that used to sit in
there all day and there were smokers andyou were allowed to smoke at the time.
And they sat around this pool tableand I can remember going back in there

(32:58):
after the smoking burn and they were allgone and there was like nobody there.
It was empty.
And that's just oneexample how a social place

Jules-AutisticRadio.com (33:08):
can be totally ated by that rule, because they've

Harry-AutisticRadio.com (33:14):
ingrained smoking into the culture for such a long time.
And then they say you can't do it anymorein certain places, you've got it almost

Raymond-AutisticRadio.com: like the nicotine. (33:25):
undefined
It's like they advertised it for so long,they promoted it for so long that it

Jules-AutisticRadio.com (33:34):
became addictive.
Addictive, but really

Raymond-AutisticRadio.com (33:40):
buy this.
But they believe that, that ritualisticactivity, that habit, that kind of
reward and comfort zone creates flowingcreativity, and a lot of the most creative
people were indulges in many things.
Restriction of that, it's notnecessarily conducive to a

(34:00):
creative environment at times.
Although as somebody who's off mostof these indulgences in life apart
from coffee it feels like it's bettergoing straight, doing it clean,

Jules-AutisticRadio.com (34:13):
but you know each to their own.
You send money advice.
I feel to

Harry-AutisticRadio.com: get through in life. (34:21):
undefined
Obviously it depends what thatand how it impacts your health.
For me it's caffeine.
Sometimes alcohol as well.
Use the beer.
I'm sitting here but I'msitting on at the moment.
And also food, indulgence of, soyeah, you need something smokers.

(34:47):
So there's this thing, vapes and all thathave come into play, but chewing gum's,
like something to do with the mouth.
It's like all those things, if you'retold not to do something, it's a habit.
It's it's a big thing to askanybody, especially if it's a addict
especially if it's addiction to.

(35:10):
Not just the whole human thing, but justhow that affects autistic people, of
course, because a lot of autistic peoplesmoke and that's a comfort, and then
they're told not to do it, and then itmay be a stemming thing, and it must be
a serious impact, especially if you'resomewhere that you're in for quite a
period of time where he can't go somewhereto actually do the stem, do the smoke.

(35:34):
So that must be really damaging.

Lucy-AutisticRadio.com (35:38):
I did it as teenage rebellion.
My, my father was ferventlyanti-smoking in every sense.
His father was a chain smoker who'dstarted smoking at the age of 11 and
was rarely seen without a cigarette.
He was constant oneafter the other roll-ups.
So for me, the smoking thing was like,so I felt like it, it was, it started
maybe as rebellion and maybe goingagainst the grain a little bit with my

(36:03):
family, and then realized that everybodywas doing on the outside anyway.
And so it became social.

Jules-AutisticRadio.com (36:10):
I started smoking at 11 coming from a completely
non-smoking background with a slight bitof this exoticism about smoking when.
Relatives on my father's side camearound for Christmas occasions and
left the place smelling of smoke andleft silver wrapper from the inside.
So there's lots of, there's a bit of amystique about smoking, but it also was

(36:32):
something that pretty well disgusted me,with ashtrays and things lying around.
But when I had my first cigarette,I got a rush and I loved it.
I expected as an 11-year-oldboy to breathe it in.
At the same time I was tryingBacardi for the first time as well.
And it discussed me in some way.
I thought I wouldn't need to want tosmoke, and I then got a rolling machine

(37:00):
and started rolling my own cigarettesand selling them in the school and also,
moving on to hand rolled cigarettes.
So much of the time being asmoker gave you access to things
like smoking behind the bike.
Sheds in one school in myschool was smoking in the woods
sunbathing next to a pretty girl.

(37:21):
Being offered drugs if you were outin a leather jacket, leather it was a
social signifier in the early eighties.
Men at festivals, et cetera.
You had skins and you mightget something else as well.
So many things were positiveabout it except for the death.
Now,

Harry-AutisticRadio.com (37:40):
I do remember the rebellion side
of it, particularly in school.
It's it's quite funny thing backgoing this with the bad boys.
Done.
They, you're not supposed to do it.
Of the school where nobody can see,oh they think you weren't seen.
I think some things they were,but just nobody bothered them.

(38:03):
But sometimes they did because theteachers had to be seen to, draw a line.
But I do recall that, and I doremember being disappointed and
afraid to took up smoking and

Jules-AutisticRadio.com: because I was brought up in a (38:14):
undefined
house where smoking was bad.
Especially the health consequences.
And there was I that was partly

Harry-AutisticRadio.com (38:29):
due to my, I, one of my aunties that died very
young, nothing to do with smoking.
She was only five, but it wascancer, and cancer was a big
kinda word that was frightened.
Everybody who took smoking, although I.
For anything else at the time.

(38:49):
That was the sort of, canI that all happen to you?
And it was a given, it was adefinite, so I was always confused.
And my artistic logic iswhy do people do it then?
So yeah it's certainly the culturething, certainly the social thing.
I do get that and I certainly doget, as I said before, the addiction
especially, I think about, the livesand of people and how ups and downs

(39:12):
people have and coping mechanism.

Jules-AutisticRadio.com (39:15):
I not only enjoyed the the stimulation the filthy
taste turned into all kinds of othertastes after a while, so I could taste
different things in different tobaccos.
So it became a very muchessential experience.
The rolling of the cigarette,the stem, the stem of smoking.

(39:37):
The mask it was part ofseveral of my masks smoking.
So it's very much partof autistic culture.
Definitely.
Yes.
This'll be so horrible foranybody who's currently trying
to quit to listen to us just now.
No.
If they're quitting, theyknow why they're quitting.

(39:59):
You know they're quittingbecause something's making
them feel shit about it.
So you know, if you are trying togive up smoking, just continue.
Stop trying, just don'thave the next cigarette.
That's how I gave up smoking, and it'sthe only way that eventually works.
Get some props, get somenicotine stuff to supplement.

(40:19):
So you break yourselfout the stemming, but.
We can't pretend that there aren'treasons associated with autism about
why we took it up in the first.
Yeah.
I

Raymond-AutisticRadio.com (40:28):
think all this morphed out the, the reward equation.

Jules-AutisticRadio.com (40:33):
Yeah.
I think I threw that hand grenadein because I associated I associated
somebody saying that they were lookingforward to getting home and not having
to be out and about with me thinkingI'm, I. Trying to get out of my social
day into being, it's like trying

Raymond-AutisticRadio.com (40:50):
to control our sensory app at times
may be a, we better control for us

Jules-AutisticRadio.com (40:56):
without a doubt.
I drank depressants, I drankalcohol, which is a depressant
to reduce my life experience.
Other people drink alcohol to feel asthough they want to be more sociable
and more out and more stimulation.
What I was needing was a sociallygenerally socially acceptable, but
often not because when you drink alot, you go past the threshold of

(41:21):
human dignity a lot of the time.
It's, but it's a accessible, let's say,call it way of dulling things down.
Because often autism is abouttoo much going on, too many
thoughts coming into your head.
Too many different options whenyou're thinking about something.
Often it's the absolute opposite ofwhat they describe as mono tropism.

(41:43):
It's too many thoughts coming through you.
And I used alcohol to take those down.
I now use a full spectrumcannabis medicine that I take
orally to take those things down.
The other option is to take somethingreally nasty on pharmacology,
pharmacological, it would scare me.

Raymond-AutisticRadio.com (42:01):
There's a phrase called off-label use that they
talk about, which is like when something'sused for not its original purpose and
that kinda do what they say on the label,you get exactly the opposite effect.
Sometimes like people who can fall asleepon like caffeine or speed or who take

(42:21):
a sedative and are absolutely hyper.

Jules-AutisticRadio.com: My voice has been big. (42:25):
undefined
Could anybody read out some of the texts?

Nicola-AutisticRadio.com (42:31):
Just want you to jump in though and
see what you were saying aboutlike the alcohol dull and things.
That's, I think that's exactly whyI did use it when I was like making
myself socialize to like dull downeverything that was coming in.
And it does put the blinkers on.
Yeah.
Yeah, I've got a medical cannabisprescription and I honestly now

(42:51):
think, like for me, being on PlanetEarth, part of my T's and C's is THC.
I'm like, I don't know whatto read out of the chat.
Coffee makes me drowsy.
Somebody said, and somebody elsesaid I was mute in public unless I
was smashed and out a body thing.
I think someone's, yeah,

Raymond-AutisticRadio.com (43:11):
sometimes spoke with a DHD have issues with caffeine.

Jules-AutisticRadio.com (43:16):
I think there's anecdotal evidence that drugs
do not always work on the autisticbrain in the same way that they
work on the rest of the population,which, in some kind of very simple
cod science makes sense, doesn't it?
We, if we believe that we arepossibly slightly different

(43:37):
in our brain structures,individual from each other, but.
In a kind of grouping somewhere, theautistic brain as a theory of neurology.
But anecdotally, an awful lot of peopleseem to have opposite experiences
from the norm to different drugs.
And I found myself through sort in a

Raymond-AutisticRadio.com (43:57):
lotis in the old happy phrases of the sixties do your
own thing, anecdotal evidence is great.
People say just do.
Coming off all drugs and stimulantsand keeping fit and eating correctly
can get you where you need to be.
For some people that isn't the case,and I suppose it's like this idea
of tuning in, I feel, at this lateage, just tune in and do your thing.

Jules-AutisticRadio.com (44:22):
I think the difference I've made is that after
coming down from alcohol, and I don't.
I don't think I would underplay thedifficulty of stopping alcohol is you
have to detox yourself over a periodof months, which at the beginning,

(44:43):
if you've got yourself into thesituation I got myself into with
the amount, you can't give it up.
You you have to stage it down.
Which, if you think about it,is actually a real challenge.
Because you have a number of unitsthat you have logged and then you

(45:05):
half those units over, over a coupleof weeks and then you keep halving.
And that takes a very long time.
And all at that time you are.
You have the alcohol in ready andavailable to you because you're not in
a institution, you're out in the wild.
In my case, in the back of a van in Europeor in some of these volunteer projects.

(45:30):
One of the ways to come down outof those kind of addictions is to
use another crutch and high THC.
Allowing my body to physicallydry out whilst my brain was still
getting the same kind of tickling.

(45:50):
But then you have to come down fromthat and street weed and where most
people are getting a high is so highin THC that you can't sustain that.
So you have to then come downfrom that with a full spectrum,
preferably something that is edible.

(46:13):
If you want to get anywhere close tothe Nirvana, you've talked about that
someone get, that, people do get toreally low use or even no use of any
stim and into health and fitness.
That's a really big jump from wheremost people are in their everyday lives.
But that's the stepping stones I'm using.

(46:34):
And I'm gradually reducing theoral dosage of that, hoping to aim
up to microdosing in the future.

Raymond-AutisticRadio.com (46:41):
Point check.
Yeah.
Everybody's tapering off.
Even those using nasty pharmacologicalmedications have to taper off at some.
It's an ideal, goingclean and being straight,

Jules-AutisticRadio.com (46:54):
to be honest, I'm not exactly clean, in the text, somebody
saying, I'm going into old age stoned.
I'm off it until I hit 75.
So taking a break now and whenwe hit 75, we're gonna go for it.
Is that right Lucy?
We're gonna have a bigfucking 75-year-old party.

(47:15):
I'm gonna have a bottle of whiskeyand you are gonna get stoned.

Lucy-AutisticRadio.com (47:18):
Oh shit.
Yeah.
Yeah.
I'm gonna, I'm gonna be tototally outta my box, I think
for the last part of my life.
Why not?
I think that yeah.
I think old age is the time tostart doing like really unhealthy
things because who cares?

Jules-AutisticRadio.com (47:34):
Heroin at 80,
right on James.
Just so you're thinking there.
I think that would be me losingmyself, the eventual death.
If you can have some kind of controlover your death with morphine, I think
you're doing a good a good death.

(47:55):
A good death is hard to come by.
Well, it's 5.
44 now, so our drop in hour is finished,and thank you to all the people who
have texted, and also to the peoplewho have put their voices to this,
that are going to allow us to put someof those words out into the podcast.
If you join us here at the 444, your voiceisn't recorded, your text isn't recorded,

(48:19):
but the people here have given permission,so that it's an example for others.
See you again.
Always.
Reliably.
Sunday.
444pm.
Cheers guys.
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