May 26, 2025 • 33 mins
"Autistics don't travel." "It's too much for us "
"We're a disabled group ! " Well not always....
Nicola-Autistic-Radio.com
Shares with Jules in India different and similar takes on the Travel Experience.
Do you have a thought on Travel for Nicola to Share?
She looks forward to including you for her new series.
Episode ONE Link Episode TWO link Episode THREE Link Episode FOUR Link
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Slow conversations that we have about our own autism with lots of silences. (edited out here)
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Jules
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jules-AutisticRadio.com (00:03):
We speak our words, we listen,
we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
, There's another example yesterday I tooka motor taxi, , a motorized rickshaw
(00:27):
to a place about a kilometer away.
I needed to make sure mymobile phone kept working.
So I needed to go to the, the maindealer rather than one of the guys on
the streets that I might normally use.
Instead of taking the motortaxi back, , it had become dark.
So I walked through, , an areawhere it was predominantly Muslim
(00:52):
people that lived in that area.
And I was welcome again.
I, I, I always like walking throughthe areas where Muslim people live,
whether it be in India or Africa.
, there's a.
a security and a sense of thingsthere that I'm familiar with.
(01:13):
, Strict crow codes of, , behavior, , makeme as a man quite safe in those areas.
, I saw another industry.
, I heard the noise first and therewas a, an even smaller workshop,
the size of somebody's bathroom.
(01:35):
An ancient piece of machinery was
there.
A guy was feeding it withdifferent types of grain.
He had sacks of millet, he had sacks ofsorghum, he had sacks of strong wheat.
For each of the different unleavenedbreads that they have here, there's a,
(01:56):
there's a different source material.
Rather than it coming from a bigmiller , miles away, it's made
on site in the traditional way.
And it's sold around his communityto the different people around him so
that they can make their own, , chapatior naan or whatever they're making.
(02:20):
He had a price list up In Arabicscript , he explained that there were
all these different, , grains that he wasproducing, , and another guy comes along.
So we're, we're, we're threeguys talking about machinery.
Well, when I say talking.
We're gesturing, and illustrating, andsmiling, and looking at each other.
(02:43):
, we don't really need the language,because he can see the intention
of my interest, and I can seehis pride in what he's doing.
So everybody has this lovelyexperience in that moment.
And I did, I did make the point to himthat, you know, with gestures and banging
(03:07):
on my chest and coughing, that he needsto be careful because of the dust, , and
saying that he'll die by giving the symbolfor death, And they do laugh and they,
they point to this extraction system,which, , goes from the machinery, goes up
into the, , to the top of the building.
And then instead of going out whereit's supposed to vent into the street,
(03:27):
it actually just hits the wall andthen just fills the room with dust.
So
there's not, there's not acomplete romance in this.
What I'm, what I'm watching thereis a man that is destroying his
own health knowingly, but as atourist, I think it's a fascinating
(03:55):
insight into, into how people live.
Nicola-AutisticRadio.com (03:59):
Yeah.
It's, it's, , it's real.
It's just the realness of it.
And I think that's the sense thatI'm getting when I'm hearing you talk
about, , everything from being onthe plane to being there, it's just
like, this isn't, this is real life.
Yeah.
That's happening.
It's not, it's not likea dream of India, is it?
Jules-AutisticRadio.com (04:24):
Well, for me, it is a dream of India.
I am isolated from this.
I am a really privileged tourist.
, I'm not a traveler as peopletry to, , brag about them being,
you know, I'm not on a gap yard.
, that kind of, um, showy off ness thatto me goes with neurotypical behavior.
(04:47):
Isn't what I'm about here.
, I'm actually living my life asa outside observer, scraping the
surface of other people's lives.
It's, it's the intention, I think,that occasionally puts me into
these situations that gives thatview that is otherwise hidden.
(05:15):
, I was thinking about it.
Last night, , when I was bookinga hotel and I had the option of a
hotel to go to the next place thatcost a thousand pounds a night.
And I chose the one thatcost 12 or 13 pounds a night.
(05:35):
, Now I can't understand what the experiencewould be in a hotel of a thousand
pounds a night, except to be entirelyisolated away from the people around you.
And my feeling is that thepeople you would be interacting
(05:57):
with in that circumstance wouldbe constantly afraid of you.
Because the power you have over themis the power of life and livelihood.
You make a complaintand they lose their job.
It's possible for people of quite modestmeans in the UK to come over here to
(06:21):
India to visit Goa, which I'm I'm goingto end up in a few, well, a couple of
weeks, , and live like a Maharaja and beunaware of the cruelty that they could
inflict on somebody because after a veryshort while in living in five star luxury,
(06:46):
they become used to the difference.
And they lose their empathywith the people around them.
The people around them become so otherthat they don't have to think about
them or want to think about them.
, My experience is that in thesecheaper hotels, at the start, I'm,
(07:09):
I'm quite an interesting person.
I'm something to be, , looked atand then I stay long enough for them
to start ignoring me and not caretoo much about whether I get the
right thing for breakfast or not.
And it's that invisibilitythat I then gain from.
Nicola-AutisticRadio.com (07:31):
Yeah, , the service industry is a hard place to work
at the best of times and you imaginepeople spending that sort of much
money, how hard that job's going to get.
Like you say, it's people supportingfamilies, , not just their own
lives, but the lives of others.
Jules-AutisticRadio.com (07:53):
On your point there, Nicola, I was speaking
to one of the chaps downstairs.
Yes.
And he wanted to know howhe could change his life.
I have this conversationwith young men quite often.
But the information I got from himwas that he had been working in
(08:13):
insurance and he had returned backto, , Satara, the place I am now, to
support, because he had family troubles.
His family troubles were financial.
And he'd only been workingin the hotel for a few days.
His
income was 120 per
(08:36):
month,
which is not much more than
a day and a half here, a dayand a half that I'm spending.
There's nothing left over from his120, well he said 100 to 120 a month,
(08:59):
, so 25 a week.
He's living from hand to mouth with,, three generations and that's why
he wants to try and find a way out.
It's the inequality that we'reexperiencing in the UK, that for working
(09:19):
people here is very, very similar.
Nicola-AutisticRadio.com (09:26):
I looked about, about, , autism in India and
what the, what the attitude was, , there
in
Jules-AutisticRadio.com (09:40):
I've, I've, I've, I, I've, I've paid, I've paid
120 rupees, uh, and I'm gonna be cured
next week.
Oh,
Nicola-AutisticRadio.com (09:47):
really?
So the, the autism in India like is.
It's seen as like very, still verystigmatized, it's seen as a mental
health problem and that's what it is.
As I understand something that, you know,is just, , like it can be in some families
over here, something that you just hide.
Um,
(10:08):
and I imagine that in, you know,really loving families with
resources, there's, you know, that'swhere the support can come from.
, but in situations wherethere's, there's not that.
resource, those resourcesaren't as available.
I think I imagine life can quicklyget really very difficult for people.
(10:29):
, it's something that I've read before quitea lot where people who have said that
they find it easier to socialize whenthey're traveling because people just
think, oh, just that this is a strangewhite person just visiting our country
and being, that's their different ways andkind of, it's almost like a built in mask.
Jules-AutisticRadio.com: Yeah, you're right. (10:46):
undefined
, a Western as a weirdo, an autisticperson back home as a weirdo, , here
because you're Western, you're notexpected to understand any of the
social or fit to them in the way thatyou might be expected to back home.
, so yeah, that you don't have to mask.
(11:06):
Masking is something thatmakes no sense here because you
can't, you can't get it right.
Um, the, the things you cando is make sure that you
don't stare at people too much, , andthat you eat with your right hand.
, but even those in the modernworld are, , fairly relaxed.
(11:32):
, It's a luxury.
It's a luxury not to be,
, Required or have pressure on youin any way to conform to made
up social structures back home.
And the other thing you notice is in thesecultures, and I will say these cultures,
because this is a town of many cultures.
(11:57):
The rules are so different asto make the rules back home.
Obviously made up.
obviously constructed.
If you, if this culture, it has, orthese cultures have a whole set of
(12:18):
social rules that contradict and conflictwith the normal social rules back home.
It puts the lie to social rulesback home being healthy and normal.
Nicola-AutisticRadio.com (12:35):
Oh, which they're so, they're so not, , obviously.
So,
what's your day going to look like today?
What's Day for you at the moment, , howhave you, how have you built little bits
of structure in for yourself or is, or areyou able to on a daily basis just be open?
Jules-AutisticRadio.com (13:00):
There is a very simple structure to every day.
You,
you are stripped back to the conceptof when it gets light and when it gets
dark, when you need to eat and whetheryou've had the necessary amount of
(13:22):
calories and vegetables and vitamins.
To sustain you as a human being,
, I don't need to go and look for humaninteraction because it comes to me, , and
it comes to me in a manageable way.
(13:45):
I, I tend to think of this hotel roomat the moment as where I start from.
And I go out in short burstsof activity and return to it.
What a lot of people end up doing isthey end up being exposed all the time
(14:05):
to, , an unmanageable set of changes.
And that, that's for autisticpeople and for non autistic people.
, in fact, I would say that in thosecircumstances, it's the autistic
people that manage better, , thanthe non autistic people.
, I see the breakdowns of people.
(14:28):
Not understanding that the rulesthat they, the social rules that they
brought with them don't apply here.
And I, I see the frustration of peoplethat they, they no longer have the powers
that they used to have, or they no longerunderstand the things around them that,
because they were so comfortable intheir privilege back home as non autistic
(14:49):
people, that they're disrupted more.
You know, in the same waythat COVID disrupted them more
because they were more isolated.
I'm comfortable with being in thisroom a lot of the time and doing things
that interest me on the computer.
Doing editing for, , the radio podcast,doing bits of work, prepare me for the
(15:14):
upcoming, , presentations, , doing someinteraction with people, , emailing
with people, , for work purposes,but also for, for social purposes,
it feels as though I have a, a basein this room, , for a week or so.
And then I will move my baseto another room that will be
(15:34):
quite similar for a week or so.
In between, there'll be an adventure.
, and when I get there, therewill be a different set of.
experiences as I leave the room eachday for an hour here, an hour there.
, but in general, I've got this base.
It's, it's a freedom beingautistic here that I can do that.
(16:00):
And I can be that self reliantfor non autistic people.
I think the disruptionis much, much bigger.
Nicola-AutisticRadio.com (16:10):
Yeah.
The, that there's somethingI've thought a lot.
I thought.
If I didn't have such difficultiessocially, like, I think it seems so
obvious, like, it's pretty much in thedescription of the condition, but if
I didn't have these issues socially,I just wouldn't be so disabled.
(16:30):
And it's that,
, in some situations, , that difficultyWith relationships that push me to be self
reliant and be able to solve my problems.
, Yes, I understand that advantage and Isee the disability side of it and it's
(16:51):
so interesting hearing you describehow when the relationship rules have
all changed, when that whole socialworld has changed, those people, like
other people are, are, , are disabled.
by their ability to kind of like,learn all these social rules.
So that my brain is just seeing thislittle, , infinity symbol, I think
(17:15):
happening there when you speak.
, I picked up on work and I think thatthat's a common theme in both , my
travel experience and the one that you're, you're talking about just now is like, I
couldn't, it makes sense to me now why Isaw Couldn't cope with the idea of just
traveling without having some work to do.
(17:36):
I hear you as well talking about, workhaving been part of that structure.
, are, are autistics workaholics?
Jules-AutisticRadio.com (17:48):
Well, we've heard Lucy describe her
father and we've , heard about him
finding his own space workingwithin the police force, not as
a policeman, but as a support.
Working hard at it for his familyand making it his specialism,
(18:12):
um, to potentially some of theexclusion of the other things.
It can be something I think that someautistic people, , use as an addiction.
You know, workaholic is a term.
Is the sense of addiction.
(18:32):
, in the same way that I think becauseof the social situation for us, we are
often, , towards the alcoholic or the,the drug addict or the, , exercise person
or the control over our own food intake.
All of these, , parts of.
Humanity are often things thatwe end up using because of our,
(19:00):
, experience of the societyaround us as a coping, coping
mechanism as a control mechanism.
I'm not a workaholic.
I'm lucky to enjoy some of the thingsthat I do that I concentrate hard on.
(19:21):
Also very much somebodythat, , is willing to do nothing.
Before we spoke to each other, I madea little recording about Doing nothing
and looking at a tree and that's partof travel, the opportunity to do nothing
(19:44):
and then allow the situation aroundyou to, to take you over in a very
pleasurable, intense, emotional way.
I ended up crying, but I didn't,I wasn't sad, , it was the
intensity of that small experience.
(20:06):
No.
Workaholic, no.
Um, I don't think we are all,uh, workaholics or alcoholics.
I think, I think, asRaymond says, , rejecting.
The concept that we have to dothose things is a release for us
(20:28):
and being in the moment like Harrysays about when he was convinced
by a therapist to work through asan adolescent and be in the moment.
I think that is an advantagefor us and accessible for us.
I don't think.
That the neurotypicals whotry to support us are willing
(20:51):
to accept and encourage that.
Nicola-AutisticRadio.com (20:55):
I've been listening along to you and trying to
visualise, , walking around that town whenyou were talking about the cows and stuff.
When you were talkingabout, , visiting the people.
The printing press and then the Miller,, I was thinking, where, where would I go
to feel safe outside to just be able tokind of be in the moment in such a place?
(21:16):
, it might not be something that as a, as aman you find so difficult to find, has it
been hard for you to find outdoor spaceswhere you can just be in the moment?
Jules-AutisticRadio.com: This is not Nirvana. (21:27):
undefined
This is a dirty, noisy, smelly,intense, polluted environment.
It is, in some ways, a kind of hell.
(21:51):
It is easy to see around me the follyof human beings and what we are doing.
It is the most progressive, modernplace that you could imagine.
(22:14):
,I'll give you an example.
I went out with a guy from the hotel theother day, , in itself, just jumping on
the back of his scooty and him takingme past where his uncle drives a motor
rickshaw and pointing out the school, theconcrete white school that looks like the
(22:39):
kind of place that is an intensive farmfor chickens, , taking me to the, the
fort where Here, somebody from the 10thcentury is, is regarded as, , a hero, even
after all these years, because he foughtoff, I think it was the Mongols, , and
(23:04):
the 13th generation now lives in this townwith, , inside a palace of 120 people.
I'm not sure rooms or bedrooms, , andstill there's a regard for this family.
They are powerful and they are both richand grasping and occasionally benevolent.
So they, they manage to balance it.
(23:29):
, So we got about as far away fromthe city up onto this mountainous
fort top, and it was still noisy.
It was as far away as you could get.
And I asked him, I said, Have you everexperienced a time in your life where
(23:53):
there is no noise, where you can be in theforest and there's just the movement of
leaves or birds or something like that?
And at first he said, Oh yeah, yeah, yeah.
And then you saw him think a little and heprobably went in his mind to where he had
been out in the countryside or whatever.
(24:15):
And then he said no.
I've never experienced that.
I've never experienced the lack of noise.
Right now, there is echoingaround in the corridors.
I can hear motor taxis.
I can hear birds, which is nice, but I canhear dogs fighting with each other, and
(24:37):
I can hear people shouting at each other.
, I can also hear hums of electricity.
And it's, it's a neverending cacophony here.
So again, putting the fantasy to,, people's ideas of India, even if I've
(24:59):
been right up in the Himalayas, , orthe footholds of the Himalayas, there
have been people chattering next to me.
, it's a rare, rare thing,quiet in the, in this country.
Nicola-AutisticRadio.com (25:12):
Oh my goodness.
I think I'm going to have ameltdown just thinking about
this too much.
That is so intense.
And what, like, an absolute,like, contrast to the quiet,
, that's quite easily found in Scotland.
(25:34):
, So, again, why?
Why, Jules?
Why are you there?
Jules-AutisticRadio.com (25:41):
I'm just waiting for the shouting
in the background to stop.
, the guys are calling to each other upthe stairs to say which rooms they've
cleaned and which they haven't.
, I'm here because I'm autistic,and The intensity of experience
is something that I can experiencein a way that non autistic can't.
(26:05):
It's almost drug inducing.
It's almost, um,
it's, it's on the edge of overwhelm,but it's, it's, it's sweeter than that.
It's like that feeling you have whenYou've got a wiggly tooth as a kid
and you wiggle on it and you can feelthat thing that's not quite pain, but
(26:29):
it's, it's a, it's an intense feeling.
, so experiencing that is wonderful.
, intellectually.
, I like the, I like the feelingthat I am doing this, I'm, I'm
achieving this level of being okay.
(26:49):
Realizing how difficult some of it is,, and still doing it is, is a, is a, is a
feeling to me, it's, it gives me pleasure.
, And there's curiosity.
As so many autistic people are, weare really curious about seeing behind
things and how they really work ratherthan the face that is given to us.
(27:15):
You know, we don't, we don'ttrust the, the veneer that's
offered to us by societies.
And if you go to another culture, it's,it's a way of understanding human beings
from an outside perspective that maybeit would be difficult to do back home.
(27:39):
So there's lots of aspects toit, , just constant novelty or the
opportunity of constant novelty,but under my own control so that I
don't, you know, break down in it.
Nicola-AutisticRadio.com: I think, I like to think, (27:57):
undefined
, one of the things that I find helpfulin my life is just, Like, realizing
that, , I take an absolute responsibilityfor the choices that I make.
Like, I am choosing this, thisexperience that I'm having, , and I
think it's, listen to you say that,like, I, I feel that the intensity in my
(28:22):
life, , I, I get that keeps me on thiskind of, like, Edge of feeling alive.
I probably, I do getfrom, , the challenges that
I carry in my current life.
And then I look back at times whenI was traveling, , I had many,
much less responsibilities, , asI do now as a, single mom.
(28:42):
Um, and then I did, I did really.
I did feel very, very alive actuallydoing these things that were taking
me so out of my comfort zone to tryand, I was trying, it helped me to try
and understand me before I knew whyme was quite difficult to understand.
(29:04):
Um, and you being, , Past that partof having the inner manual, like,
is the impression that I have.
And now getting to explore, , like, theworld with that appetite for, , the edge.
I can understand that.
(29:25):
, thanks for sharing.
Thank you for sharing all that.
Jules-AutisticRadio.com (29:27):
You're right.
You're right.
Um, I'm old, is whatyou're saying in some ways.
And, and that's true.
And that is part of it as well.
It's not just, it's not just that I can dothis a little bit more easily than I would
have been able to, and I've gone throughexactly what you've just described.
(29:49):
I think you described itincredibly well there.
, But I'm also old, and if I don't do thingslike this now, the opportunity will go.
At the moment, I can stick a, a tinyrucksack on my back and, and I can
(30:09):
pick up the little wheeled suitcase.
I, I travel incredibly light,, and I can walk up the railway
steps two at a time while otherpeople are using the escalator.
And I do it purposefully to makesure I get some exercise in my day.
That's not going to be forever.
And taking advantage of time now.
(30:32):
is about not having any regrets in thefuture because everybody says they wish
they'd spent less time in the office.
Well, I didn't spend allthat time in the office.
I've been traveling while I had myfamily and I've been living a different
life and that's because I'm autistic.
(30:52):
Not despite being autistic.
Autistic radio is about us,it's for us, and it's from us.
Autistic radio is about you, it'sfor you, and it can be from you.
(31:14):
We have, every single Sunday, drop in, 4.
44pm every Sunday.
That's not live, that's us gettingtogether, us talking, community.
Every Sunday, Harry leads a 5 5 5 p.
(31:34):
m.
A discussion around theFacebook page that he creates.
Involve yourself by suggestingwhat we should talk about next.
Share it with Harry.
And then, the bigger picture.
(31:54):
Advocate.
Use us.
Speak to the world.
Your project, your idea, your enthusiasm.
We have a whole range of differentprograms that will fit what you want.
As far as listening goes, there'ssome challenging stuff out there.
(32:16):
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals, challenging
their ideas, and bringing whatyou say in other spaces to them.
(32:38):
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
Autistic radio is very varied.
We need a favour.
To encourage us, we need you to share us.
(33:00):
When you share us, yougive autistic people power.
When you share us, you makeus impossible to ignore.
When you repost on LinkedIn and Facebookand anywhere else, you're advocating
for everybody in the autistic community.
(33:23):
So pick the things that you'rehappy with and get them out there.
So thank you.
Thank you, thank you.
Thank you, from all of us.
We speak our words, we listen,
we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
, There's another example yesterday I tooka motor taxi, , a motorized rickshaw
(00:27):
to a place about a kilometer away.
I needed to make sure mymobile phone kept working.
So I needed to go to the, the maindealer rather than one of the guys on
the streets that I might normally use.
Instead of taking the motortaxi back, , it had become dark.
So I walked through, , an areawhere it was predominantly Muslim
(00:52):
people that lived in that area.
And I was welcome again.
I, I, I always like walking throughthe areas where Muslim people live,
whether it be in India or Africa.
, there's a.
a security and a sense of thingsthere that I'm familiar with.
(01:13):
, Strict crow codes of, , behavior, , makeme as a man quite safe in those areas.
, I saw another industry.
, I heard the noise first and therewas a, an even smaller workshop,
the size of somebody's bathroom.
(01:35):
An ancient piece of machinery was
there.
A guy was feeding it withdifferent types of grain.
He had sacks of millet, he had sacks ofsorghum, he had sacks of strong wheat.
For each of the different unleavenedbreads that they have here, there's a,
(01:56):
there's a different source material.
Rather than it coming from a bigmiller , miles away, it's made
on site in the traditional way.
And it's sold around his communityto the different people around him so
that they can make their own, , chapatior naan or whatever they're making.
(02:20):
He had a price list up In Arabicscript , he explained that there were
all these different, , grains that he wasproducing, , and another guy comes along.
So we're, we're, we're threeguys talking about machinery.
Well, when I say talking.
We're gesturing, and illustrating, andsmiling, and looking at each other.
(02:43):
, we don't really need the language,because he can see the intention
of my interest, and I can seehis pride in what he's doing.
So everybody has this lovelyexperience in that moment.
And I did, I did make the point to himthat, you know, with gestures and banging
(03:07):
on my chest and coughing, that he needsto be careful because of the dust, , and
saying that he'll die by giving the symbolfor death, And they do laugh and they,
they point to this extraction system,which, , goes from the machinery, goes up
into the, , to the top of the building.
And then instead of going out whereit's supposed to vent into the street,
(03:27):
it actually just hits the wall andthen just fills the room with dust.
So
there's not, there's not acomplete romance in this.
What I'm, what I'm watching thereis a man that is destroying his
own health knowingly, but as atourist, I think it's a fascinating
(03:55):
insight into, into how people live.
Nicola-AutisticRadio.com (03:59):
Yeah.
It's, it's, , it's real.
It's just the realness of it.
And I think that's the sense thatI'm getting when I'm hearing you talk
about, , everything from being onthe plane to being there, it's just
like, this isn't, this is real life.
Yeah.
That's happening.
It's not, it's not likea dream of India, is it?
Jules-AutisticRadio.com (04:24):
Well, for me, it is a dream of India.
I am isolated from this.
I am a really privileged tourist.
, I'm not a traveler as peopletry to, , brag about them being,
you know, I'm not on a gap yard.
, that kind of, um, showy off ness thatto me goes with neurotypical behavior.
(04:47):
Isn't what I'm about here.
, I'm actually living my life asa outside observer, scraping the
surface of other people's lives.
It's, it's the intention, I think,that occasionally puts me into
these situations that gives thatview that is otherwise hidden.
(05:15):
, I was thinking about it.
Last night, , when I was bookinga hotel and I had the option of a
hotel to go to the next place thatcost a thousand pounds a night.
And I chose the one thatcost 12 or 13 pounds a night.
(05:35):
, Now I can't understand what the experiencewould be in a hotel of a thousand
pounds a night, except to be entirelyisolated away from the people around you.
And my feeling is that thepeople you would be interacting
(05:57):
with in that circumstance wouldbe constantly afraid of you.
Because the power you have over themis the power of life and livelihood.
You make a complaintand they lose their job.
It's possible for people of quite modestmeans in the UK to come over here to
(06:21):
India to visit Goa, which I'm I'm goingto end up in a few, well, a couple of
weeks, , and live like a Maharaja and beunaware of the cruelty that they could
inflict on somebody because after a veryshort while in living in five star luxury,
(06:46):
they become used to the difference.
And they lose their empathywith the people around them.
The people around them become so otherthat they don't have to think about
them or want to think about them.
, My experience is that in thesecheaper hotels, at the start, I'm,
(07:09):
I'm quite an interesting person.
I'm something to be, , looked atand then I stay long enough for them
to start ignoring me and not caretoo much about whether I get the
right thing for breakfast or not.
And it's that invisibilitythat I then gain from.
Nicola-AutisticRadio.com (07:31):
Yeah, , the service industry is a hard place to work
at the best of times and you imaginepeople spending that sort of much
money, how hard that job's going to get.
Like you say, it's people supportingfamilies, , not just their own
lives, but the lives of others.
Jules-AutisticRadio.com (07:53):
On your point there, Nicola, I was speaking
to one of the chaps downstairs.
Yes.
And he wanted to know howhe could change his life.
I have this conversationwith young men quite often.
But the information I got from himwas that he had been working in
(08:13):
insurance and he had returned backto, , Satara, the place I am now, to
support, because he had family troubles.
His family troubles were financial.
And he'd only been workingin the hotel for a few days.
His
income was 120 per
(08:36):
month,
which is not much more than
a day and a half here, a dayand a half that I'm spending.
There's nothing left over from his120, well he said 100 to 120 a month,
(08:59):
, so 25 a week.
He's living from hand to mouth with,, three generations and that's why
he wants to try and find a way out.
It's the inequality that we'reexperiencing in the UK, that for working
(09:19):
people here is very, very similar.
Nicola-AutisticRadio.com (09:26):
I looked about, about, , autism in India and
what the, what the attitude was, , there
in
Jules-AutisticRadio.com (09:40):
I've, I've, I've, I, I've, I've paid, I've paid
120 rupees, uh, and I'm gonna be cured
next week.
Oh,
Nicola-AutisticRadio.com (09:47):
really?
So the, the autism in India like is.
It's seen as like very, still verystigmatized, it's seen as a mental
health problem and that's what it is.
As I understand something that, you know,is just, , like it can be in some families
over here, something that you just hide.
Um,
(10:08):
and I imagine that in, you know,really loving families with
resources, there's, you know, that'swhere the support can come from.
, but in situations wherethere's, there's not that.
resource, those resourcesaren't as available.
I think I imagine life can quicklyget really very difficult for people.
(10:29):
, it's something that I've read before quitea lot where people who have said that
they find it easier to socialize whenthey're traveling because people just
think, oh, just that this is a strangewhite person just visiting our country
and being, that's their different ways andkind of, it's almost like a built in mask.
Jules-AutisticRadio.com: Yeah, you're right. (10:46):
undefined
, a Western as a weirdo, an autisticperson back home as a weirdo, , here
because you're Western, you're notexpected to understand any of the
social or fit to them in the way thatyou might be expected to back home.
, so yeah, that you don't have to mask.
(11:06):
Masking is something thatmakes no sense here because you
can't, you can't get it right.
Um, the, the things you cando is make sure that you
don't stare at people too much, , andthat you eat with your right hand.
, but even those in the modernworld are, , fairly relaxed.
(11:32):
, It's a luxury.
It's a luxury not to be,
, Required or have pressure on youin any way to conform to made
up social structures back home.
And the other thing you notice is in thesecultures, and I will say these cultures,
because this is a town of many cultures.
(11:57):
The rules are so different asto make the rules back home.
Obviously made up.
obviously constructed.
If you, if this culture, it has, orthese cultures have a whole set of
(12:18):
social rules that contradict and conflictwith the normal social rules back home.
It puts the lie to social rulesback home being healthy and normal.
Nicola-AutisticRadio.com (12:35):
Oh, which they're so, they're so not, , obviously.
So,
what's your day going to look like today?
What's Day for you at the moment, , howhave you, how have you built little bits
of structure in for yourself or is, or areyou able to on a daily basis just be open?
Jules-AutisticRadio.com (13:00):
There is a very simple structure to every day.
You,
you are stripped back to the conceptof when it gets light and when it gets
dark, when you need to eat and whetheryou've had the necessary amount of
(13:22):
calories and vegetables and vitamins.
To sustain you as a human being,
, I don't need to go and look for humaninteraction because it comes to me, , and
it comes to me in a manageable way.
(13:45):
I, I tend to think of this hotel roomat the moment as where I start from.
And I go out in short burstsof activity and return to it.
What a lot of people end up doing isthey end up being exposed all the time
(14:05):
to, , an unmanageable set of changes.
And that, that's for autisticpeople and for non autistic people.
, in fact, I would say that in thosecircumstances, it's the autistic
people that manage better, , thanthe non autistic people.
, I see the breakdowns of people.
(14:28):
Not understanding that the rulesthat they, the social rules that they
brought with them don't apply here.
And I, I see the frustration of peoplethat they, they no longer have the powers
that they used to have, or they no longerunderstand the things around them that,
because they were so comfortable intheir privilege back home as non autistic
(14:49):
people, that they're disrupted more.
You know, in the same waythat COVID disrupted them more
because they were more isolated.
I'm comfortable with being in thisroom a lot of the time and doing things
that interest me on the computer.
Doing editing for, , the radio podcast,doing bits of work, prepare me for the
(15:14):
upcoming, , presentations, , doing someinteraction with people, , emailing
with people, , for work purposes,but also for, for social purposes,
it feels as though I have a, a basein this room, , for a week or so.
And then I will move my baseto another room that will be
(15:34):
quite similar for a week or so.
In between, there'll be an adventure.
, and when I get there, therewill be a different set of.
experiences as I leave the room eachday for an hour here, an hour there.
, but in general, I've got this base.
It's, it's a freedom beingautistic here that I can do that.
(16:00):
And I can be that self reliantfor non autistic people.
I think the disruptionis much, much bigger.
Nicola-AutisticRadio.com (16:10):
Yeah.
The, that there's somethingI've thought a lot.
I thought.
If I didn't have such difficultiessocially, like, I think it seems so
obvious, like, it's pretty much in thedescription of the condition, but if
I didn't have these issues socially,I just wouldn't be so disabled.
(16:30):
And it's that,
, in some situations, , that difficultyWith relationships that push me to be self
reliant and be able to solve my problems.
, Yes, I understand that advantage and Isee the disability side of it and it's
(16:51):
so interesting hearing you describehow when the relationship rules have
all changed, when that whole socialworld has changed, those people, like
other people are, are, , are disabled.
by their ability to kind of like,learn all these social rules.
So that my brain is just seeing thislittle, , infinity symbol, I think
(17:15):
happening there when you speak.
, I picked up on work and I think thatthat's a common theme in both , my
travel experience and the one that you're, you're talking about just now is like, I
couldn't, it makes sense to me now why Isaw Couldn't cope with the idea of just
traveling without having some work to do.
(17:36):
I hear you as well talking about, workhaving been part of that structure.
, are, are autistics workaholics?
Jules-AutisticRadio.com (17:48):
Well, we've heard Lucy describe her
father and we've , heard about him
finding his own space workingwithin the police force, not as
a policeman, but as a support.
Working hard at it for his familyand making it his specialism,
(18:12):
um, to potentially some of theexclusion of the other things.
It can be something I think that someautistic people, , use as an addiction.
You know, workaholic is a term.
Is the sense of addiction.
(18:32):
, in the same way that I think becauseof the social situation for us, we are
often, , towards the alcoholic or the,the drug addict or the, , exercise person
or the control over our own food intake.
All of these, , parts of.
Humanity are often things thatwe end up using because of our,
(19:00):
, experience of the societyaround us as a coping, coping
mechanism as a control mechanism.
I'm not a workaholic.
I'm lucky to enjoy some of the thingsthat I do that I concentrate hard on.
(19:21):
Also very much somebodythat, , is willing to do nothing.
Before we spoke to each other, I madea little recording about Doing nothing
and looking at a tree and that's partof travel, the opportunity to do nothing
(19:44):
and then allow the situation aroundyou to, to take you over in a very
pleasurable, intense, emotional way.
I ended up crying, but I didn't,I wasn't sad, , it was the
intensity of that small experience.
(20:06):
No.
Workaholic, no.
Um, I don't think we are all,uh, workaholics or alcoholics.
I think, I think, asRaymond says, , rejecting.
The concept that we have to dothose things is a release for us
(20:28):
and being in the moment like Harrysays about when he was convinced
by a therapist to work through asan adolescent and be in the moment.
I think that is an advantagefor us and accessible for us.
I don't think.
That the neurotypicals whotry to support us are willing
(20:51):
to accept and encourage that.
Nicola-AutisticRadio.com (20:55):
I've been listening along to you and trying to
visualise, , walking around that town whenyou were talking about the cows and stuff.
When you were talkingabout, , visiting the people.
The printing press and then the Miller,, I was thinking, where, where would I go
to feel safe outside to just be able tokind of be in the moment in such a place?
(21:16):
, it might not be something that as a, as aman you find so difficult to find, has it
been hard for you to find outdoor spaceswhere you can just be in the moment?
Jules-AutisticRadio.com: This is not Nirvana. (21:27):
undefined
This is a dirty, noisy, smelly,intense, polluted environment.
It is, in some ways, a kind of hell.
(21:51):
It is easy to see around me the follyof human beings and what we are doing.
It is the most progressive, modernplace that you could imagine.
(22:14):
,I'll give you an example.
I went out with a guy from the hotel theother day, , in itself, just jumping on
the back of his scooty and him takingme past where his uncle drives a motor
rickshaw and pointing out the school, theconcrete white school that looks like the
(22:39):
kind of place that is an intensive farmfor chickens, , taking me to the, the
fort where Here, somebody from the 10thcentury is, is regarded as, , a hero, even
after all these years, because he foughtoff, I think it was the Mongols, , and
(23:04):
the 13th generation now lives in this townwith, , inside a palace of 120 people.
I'm not sure rooms or bedrooms, , andstill there's a regard for this family.
They are powerful and they are both richand grasping and occasionally benevolent.
So they, they manage to balance it.
(23:29):
, So we got about as far away fromthe city up onto this mountainous
fort top, and it was still noisy.
It was as far away as you could get.
And I asked him, I said, Have you everexperienced a time in your life where
(23:53):
there is no noise, where you can be in theforest and there's just the movement of
leaves or birds or something like that?
And at first he said, Oh yeah, yeah, yeah.
And then you saw him think a little and heprobably went in his mind to where he had
been out in the countryside or whatever.
(24:15):
And then he said no.
I've never experienced that.
I've never experienced the lack of noise.
Right now, there is echoingaround in the corridors.
I can hear motor taxis.
I can hear birds, which is nice, but I canhear dogs fighting with each other, and
(24:37):
I can hear people shouting at each other.
, I can also hear hums of electricity.
And it's, it's a neverending cacophony here.
So again, putting the fantasy to,, people's ideas of India, even if I've
(24:59):
been right up in the Himalayas, , orthe footholds of the Himalayas, there
have been people chattering next to me.
, it's a rare, rare thing,quiet in the, in this country.
Nicola-AutisticRadio.com (25:12):
Oh my goodness.
I think I'm going to have ameltdown just thinking about
this too much.
That is so intense.
And what, like, an absolute,like, contrast to the quiet,
, that's quite easily found in Scotland.
(25:34):
, So, again, why?
Why, Jules?
Why are you there?
Jules-AutisticRadio.com (25:41):
I'm just waiting for the shouting
in the background to stop.
, the guys are calling to each other upthe stairs to say which rooms they've
cleaned and which they haven't.
, I'm here because I'm autistic,and The intensity of experience
is something that I can experiencein a way that non autistic can't.
(26:05):
It's almost drug inducing.
It's almost, um,
it's, it's on the edge of overwhelm,but it's, it's, it's sweeter than that.
It's like that feeling you have whenYou've got a wiggly tooth as a kid
and you wiggle on it and you can feelthat thing that's not quite pain, but
(26:29):
it's, it's a, it's an intense feeling.
, so experiencing that is wonderful.
, intellectually.
, I like the, I like the feelingthat I am doing this, I'm, I'm
achieving this level of being okay.
(26:49):
Realizing how difficult some of it is,, and still doing it is, is a, is a, is a
feeling to me, it's, it gives me pleasure.
, And there's curiosity.
As so many autistic people are, weare really curious about seeing behind
things and how they really work ratherthan the face that is given to us.
(27:15):
You know, we don't, we don'ttrust the, the veneer that's
offered to us by societies.
And if you go to another culture, it's,it's a way of understanding human beings
from an outside perspective that maybeit would be difficult to do back home.
(27:39):
So there's lots of aspects toit, , just constant novelty or the
opportunity of constant novelty,but under my own control so that I
don't, you know, break down in it.
Nicola-AutisticRadio.com: I think, I like to think, (27:57):
undefined
, one of the things that I find helpfulin my life is just, Like, realizing
that, , I take an absolute responsibilityfor the choices that I make.
Like, I am choosing this, thisexperience that I'm having, , and I
think it's, listen to you say that,like, I, I feel that the intensity in my
(28:22):
life, , I, I get that keeps me on thiskind of, like, Edge of feeling alive.
I probably, I do getfrom, , the challenges that
I carry in my current life.
And then I look back at times whenI was traveling, , I had many,
much less responsibilities, , asI do now as a, single mom.
(28:42):
Um, and then I did, I did really.
I did feel very, very alive actuallydoing these things that were taking
me so out of my comfort zone to tryand, I was trying, it helped me to try
and understand me before I knew whyme was quite difficult to understand.
(29:04):
Um, and you being, , Past that partof having the inner manual, like,
is the impression that I have.
And now getting to explore, , like, theworld with that appetite for, , the edge.
I can understand that.
(29:25):
, thanks for sharing.
Thank you for sharing all that.
Jules-AutisticRadio.com (29:27):
You're right.
You're right.
Um, I'm old, is whatyou're saying in some ways.
And, and that's true.
And that is part of it as well.
It's not just, it's not just that I can dothis a little bit more easily than I would
have been able to, and I've gone throughexactly what you've just described.
(29:49):
I think you described itincredibly well there.
, But I'm also old, and if I don't do thingslike this now, the opportunity will go.
At the moment, I can stick a, a tinyrucksack on my back and, and I can
(30:09):
pick up the little wheeled suitcase.
I, I travel incredibly light,, and I can walk up the railway
steps two at a time while otherpeople are using the escalator.
And I do it purposefully to makesure I get some exercise in my day.
That's not going to be forever.
And taking advantage of time now.
(30:32):
is about not having any regrets in thefuture because everybody says they wish
they'd spent less time in the office.
Well, I didn't spend allthat time in the office.
I've been traveling while I had myfamily and I've been living a different
life and that's because I'm autistic.
(30:52):
Not despite being autistic.
Autistic radio is about us,it's for us, and it's from us.
Autistic radio is about you, it'sfor you, and it can be from you.
(31:14):
We have, every single Sunday, drop in, 4.
44pm every Sunday.
That's not live, that's us gettingtogether, us talking, community.
Every Sunday, Harry leads a 5 5 5 p.
(31:34):
m.
A discussion around theFacebook page that he creates.
Involve yourself by suggestingwhat we should talk about next.
Share it with Harry.
And then, the bigger picture.
(31:54):
Advocate.
Use us.
Speak to the world.
Your project, your idea, your enthusiasm.
We have a whole range of differentprograms that will fit what you want.
As far as listening goes, there'ssome challenging stuff out there.
(32:16):
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals, challenging
their ideas, and bringing whatyou say in other spaces to them.
(32:38):
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
Autistic radio is very varied.
We need a favour.
To encourage us, we need you to share us.
(33:00):
When you share us, yougive autistic people power.
When you share us, you makeus impossible to ignore.
When you repost on LinkedIn and Facebookand anywhere else, you're advocating
for everybody in the autistic community.
(33:23):
So pick the things that you'rehappy with and get them out there.
So thank you.
Thank you, thank you.
Thank you, from all of us.
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