July 6, 2025 • 35 mins
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(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.
Hi there.
Every Sunday a group of autisticpeople get together and drop in.
(00:25):
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
that we have about our own autism.
Cheers, enjoy.
(00:48):
On the subject of entertainment, hasanybody anybody been watching the um,
series, um, where they have a group ofneurodivergent and learning disabled
people interviewing public figures?
Yeah, the assembly, uh, myinitial reaction was quite a
(01:08):
bit of discomfort about it.
I think I've mentioned this beforeabout how a lot of TV is edited
and scripted and emotionallytriggering, you know, intentionally.
So, uh, but there was a bit of me askingquestions to myself about it today,
about the inappropriate I. And there wereone or two questions that really struck
me during it that were inappropriate.
(01:31):
Well, I'm not criticizing that the,they what are seen as like, well,
you would expect somebody likemaybe David Tennant or Gary Ker to
say that's a bit rude, you know?
But they took it on the chin.
So there seemed to have been some kind ofagreement beforehand that anything goes,
which is kinda like the, um, the motto.
(01:53):
The introduction that ismentioned, anything goes.
Um, but the natural reaction I wouldimagine of a neurotypical person
would be to say, oh, I don't knowabout that question or whatever, but
they really seem to entertain thiskind of given communication mode.
So anyway, just be thoughts.
(02:13):
Yeah.
They, they explained the premiseat the beginning that no question
is off limits, and it, it.
It builds into the autistic tropethat we ask inappropriate questions
or we share too much and thesethings, um, and runs with it.
And I, I, I think it worksquite well to be honest.
(02:35):
I. Yeah, it does seem to open upan emotional scenario, you know,
a connection, um, that may nothave previously happened or been
experienced, but that's whereI get the discomfort in that.
I think it might be edited that way.
Yeah, I get what you mean.
I can see that there are somevery, um, close editing points
(02:58):
and very short snippets that.
Sort of build into a shape that isdetermined by the producers, but in
some ways I, I see it as a very positiveexample for non-autistic people to
relate to the neurodivergent people.
Um, and learning disabledpeople as a, as a group.
(03:23):
They, they call themselvesneurodivergent and learning disabled.
Yeah, there does seem to bea variety of people there.
There's a kind of, well,there's characters who appear
quite regularly, aren't they?
They're kind of like the, the characters.
Um, I like those moments, like thelong pauses where it's quite difficult
for someone to communicate well, likeis a, a funny word, but admire those
(03:47):
situations where they let that linger.
Because that is novel.
It doesn't come across as patronizing inthe normal way that, um, people who are
from a marginalized community are, arekind of put up there and isn't it amazing
they're managing to do this, you know,like a dog on walking on its hind legs.
(04:10):
They've actually got.
A really good singer who isfronting their band and the people
in the band can actually playtheir instruments to a degree.
So it, it does seem as thoughthey've been careful to make sure
that it's not just, you know,autism's got talent and patronizing.
(04:31):
Yeah, I've been looking atthe reactions of the guests.
You know, and, uh, the difficultmoments they may have in, um,
react the reactions basically.
Um, it's very strange and a lotof ways, a lot of them are actors.
Um, so you kind of know how to playa role, but I. It's a strange one.
It's like I was even thinking like,how much are they empathizing with
(04:53):
this whole community and feelingtheir way into it and thinking,
well, yeah, I accept a lot of thingsabout myself, but what am I really?
Hi everyone.
I'm a bit late dropping in today.
My eldest was back from Cadet camp.
Um, so we were justgetting in the door there.
Um, but hello Cadets.
(05:17):
Is he an Air Force cadet?
Did I remember that correctly?
No, she's still in, um, army Cadets.
So it was field craft there.
It was quite cool there.
Um.
There, the, the person who led itmade the major, um, is out out, um,
very visibly, very out and about,out about his autism as well.
(05:37):
So he, she said that he was just runningaround smiling so happy because she thinks
that he absolutely loves field craft.
I mean, hearing about Ear Air ForceCadets from other, uh, folks this week.
It sounds brilliant.
Yeah, Lucy was an Air Force cadet.
I was an Air Force cadet, and I thinkwe both spoke about stripping down a
brain gun and putting it back togetheragain, which I thought was really cool.
(06:00):
I enjoyed that part of it.
The marching part, not so much,but the, but actually doing
the practical stuff was fun.
Did I ever mention I got kicked outtathe Cubs for wearing someone else's
jersey with their minute badges on them?
Hey, Gary, you're on camera.
I'm certainly looking forward to sendingout the, um, studio to gr so that uh,
(06:23):
it's easier for him to take part in this.
So, sorry, back.
Sorry.
Hi.
Sorry.
I've just, I prepare of nothing.
I've had a very, very badmedical week this week.
Um, lots of things have happenedin this book in the, uh,
course of the last five days.
Um, and, uh, I'm going to begoing to a lot of hospitals
and me having a lot of tests.
(06:44):
Um, they found a problem with my heart.
Um, they've found, uh, I've had, I'vebeen told by the dentist that my teeth
are no longer viable and I'm gonnahave to start thinking about dentures.
That's gonna be fun.
Um, um, on top of that, I've been,uh, run ragged with doctors calling me
about this and calling me about that.
Seems every test I've done.
(07:06):
Sorry, Lucy, he didn'trealize you were talking.
Carry on.
No, no, that's okay.
That's okay.
Yeah.
So, um, I, I, I've got to have a,a back trips down to the hospital.
Um, I've got this thing where in my heart,um, I can't remember what it's called.
I think it's elongated QC qt, but itbasically means the little electrical
pulse that keeps your heart going.
(07:27):
It's not really working on mine.
Um, and so the spark that makes yourheart beat at a regular rhythm has
decided that that's gonna con out.
So I've gotta go through that.
Um, I've gotta go through havingpossibly all my teeth taken out
and the den den is put in, um,because they're in a bad state.
My mouth is overcrowded and the teethjust aren't really viable anymore.
(07:49):
Um, I've had blood tests like youwould believe, thyroid tests and, um.
I've also been told aboutcholesterol that I've gotta train.
I'm, I'm honestly speaking, this has beena week where I've just been backwards
and forwards to a doctor all week.
So I'm so exhausted with it all.
But it's also also a little bitalarming 'cause some of the things.
(08:10):
Because some of the thingsthey're saying are just quite big.
I hear you, Lucy.
That's, um, that's quite a big deal.
But fortunately we have, um, ahealth service in this country,
so even poor people like ourselvesget access to, um, to doctors.
And most of what you're experiencingwill become a lot easier, I'm
(08:32):
guessing, over the next few weeks.
Yeah, except with the, withthe dentist it's sort of
money, money, money with them.
So.
Um, they did course they ask if I wantthis particular course of treatment and I
just can't afford to do it, so I'm havingto go the, the, the poor person's route,
unfortunately, which could end up with me.
(08:53):
Um, yeah, I'm, I, might I have a Hollywoodsmile, I guess Then if, uh, if all kind
of goes the way I think it is going to.
Lucy, was it you that was sayingonline you had to accept a dental
plan or you would lose your placeon the NHS Um, dental eligibility.
Yeah.
So, uh, down here, um, youhave to have a dentist.
(09:18):
Obviously every is supposed to have adentist, but there are the NHS dentistry
is so, so bad now that it's very rarethat you actually find yourself a
place where they'll take you on as apatient, which I found, uh, through
just searching and search and searching.
Now the problem is, is that these arealways run through private clinics.
So you have a private, uh, dentalsurgery, which will have a number
(09:42):
of NHS patients on board as well.
Uh, they make an appointment for you ifyou don't keep that appointment or you
cancel it too late, or if you cancel morethan two in a row or something like that.
There's lots of differentways you could do it.
You get unceremoniously kicked.
Off of their list and you could nolonger get NHS treatment from them.
(10:03):
Um, I've had this before.
My last gp, my last dentist, I misseda checkup and I was told that I was no
longer, um, a patient on their list.
So yeah, this is what happens here.
I'm sure though, with prior warningor like I think up here, it's like
you've gotta give 24 hours noticeif you've gotta change of plans.
I know how anxious itcan be attending dentist.
(10:25):
Uh, I remember a friend of mine used toalways have to get Valium before he went.
I just wonder if they stillprescribe that for nervous patients.
Yeah, they do.
Um, not that I'm a nervous patient.
I'm, I'm actually a pretty stoic patient.
I've had a lot of teeth out in my timefrom when I was a kid right up to now.
Um, but uh, I think it's about,yeah, you do have to give a
(10:47):
solid reason for not going.
And yes, they still give diazepam.
When I took to surgery, um, theyused to come in, people used to come
in regularly for just a days event.
Diazepam tablet to get themthrough the dental work.
See, that's and aboutall the doctor stuff.
I was at the doctor's this week andum, I had to get bloods taken while
(11:08):
I was getting my blood pressure done.
After that, I ended up passing out.
Which was really inconvenient.
I hate going to the doctor.
Um, but I did get some migraine treatment,so I've, this week I've been able
to medicate a migraine and not beingjust paying for three days solids.
(11:29):
So I. It was a bit scarytaking a new medication though.
But it's not gone too bad.
I would, I wouldn't say it'sworked a hundred percent, but it's
uh, really taken the edge off.
Yeah.
Finding the migraine medicationsa real battle for a lot of people.
Had friends who went through lotsof different treatments before
they found something that worked.
(11:50):
I'm not the worst at dentists andhonestly speaking, um, I do, I do
manage to, I have a little happy place.
I go to a dentist and doctors and thatwhere I can, I can kind of hide myself
away in this safe place in my head.
Um, I've had quite a lot done.
I had when I had, um, you probablydon't wanna know how my hat,
(12:11):
the ins and outs of my mouth.
My mouth, but I've had threeteeth taken out the top and I had
my, my, uh, uh, both of my, um.
What do you call it?
Uh, the teeth at the back,uh, taken out and wisdom.
Yeah.
Wisdoms.
That's it.
Thank you.
I have wisdoms taken out.
I've had all these taken outand I've hardly flinched.
It doesn't really bother me.
(12:32):
You know, I've got thisgood zen place that I go to.
Um, but, uh, you know, it's, it'sjust all feeling a bit too much.
Uh, only because I've got somany other things on the go.
It's gonna be, it's gonna behospital room after hospital
room after ho hospital room now.
Um, and it's mainly reallydepressed at the thought that
I've got so much I've gotta do.
Um, I'm almost like really about tolaunch you into my dentist and say,
(12:56):
I don't want all, all the, the, theperipherals to go with it, just.
Just get rid of the teeth and,you know, send me on my way.
'cause Oh, heal.
It'll get better.
I'll get used to it.
Sounds like it's all coming at once.
The, the, you may hit a period whereyou, you'll just have to wait for a
few things and then it'll stretch out.
I, I can remember when I turned 50,a lot of things just hit at once.
(13:17):
And I'm going to saythis in an amusing way.
I'm not even a woman, you know,because there's additional stuff
I, I know when you're a woman.
Uh, but when I turned 50 it was like.
Losing parents and then, youknow, I had to get a colonoscopy
and then a couple other things.
And they were all dead, dead heavy at thetime, but, uh, within two years they were
(13:38):
kinda, it was all over and it was throughthe tunnel as it were into something else.
'cause things move on, don't they?
But it's intense whenit all hits you at once.
Oh, sorry.
Just one last thing is that they havedecided, because I'm on a particular
medication, I'm on Quetiapine, whichis an antipsychotic that I've been
taking for about a decade and a bit.
(14:00):
Um, and it's worked very well.
But this is one of the things they thinkmight be called is in my heart condition.
I. So they're gonna take me off atthat probably at some point, but then
they want to send me back to the mentalhealth unit for some reason as well.
Uh, that has no ulcer been cited thatI think I need to go back to the,
to, to the local mental health team.
Um, not quite explained why.
(14:20):
Um, perhaps they're incharge of the medication.
I'm hoping that's what it's for anyway.
Maybe they're just ticking boxes.
You know how it's like procedurewhen we do this, we do that.
I'm just thinking about what, whatyou were saying about your heart is.
Equivalent what they used the termirregular heart rhythm or heartbeat.
It's not specifically that, butit can lead to that because of
(14:41):
the fact that your, your heart'snot firing at the rate it should.
So, you know, it is, it, it, the, the,the electrical pulse that gets your brain
to your, um, your heart to start up.
Uh, it's kind of delayedand kind of delayed.
So, uh, it can lead to othercomplica complications like
arrhythmias and things like that.
So they need to kind of nip it in thebud now or try and work out what's
(15:03):
going on because they really don't wantme to end up with a heart arrhythmia,
which could be far more dangerous.
Yeah, we have to be careful when we'retalking about health 'cause we can go
down rabbit holes and get a bit newer.
Well, I can, you know, so, uh,I'll temper what I'm saying.
I am guessing one of the reasonsthat, um, you have to go back to the
mental health unit is because 10 yearson any one of these antipsychotic
(15:29):
drugs has implications, and thelikelihood is that they're gonna want
to monitor that withdrawal process.
In my.
Guesstimate, um, maybe you should, um,do some Googling of or get somebody
else to do some Googling of theactual, um, procedure for reducing that
(15:50):
particular drug and see what it comesup with, which I have, by the way.
Um, I never let, let things lay justsort of, they don't just let it lie.
So I have had a look and it is along and winding roads to the yp.
Well, I mean, you know, dependency,I guess guess the word would be so,
uh, it's going to be what they'regonna put me on, uh, afterwards.
(16:14):
I don't know.
I really just don't know onthe same subject in the text.
Um, somebody says that they're notlistened to by their doctor, so they don't
feel there's any point in going there.
Yeah, I was gonna read thatcomment out and comment.
As well to say that, yeah, it tookme like 11 years to manage, to get
(16:34):
a doctor to like listen to me andtreat the migraines I was having.
And it's like.
I really had to kinda work onself-advocacy and it's been really hard.
Um, so yeah, I can, I cansympathize with that, um, with
get, with being in that mindset.
And I, I definitely gotthere myself for a long time.
(16:56):
Yeah.
I'm, I'm with you there.
Um, Nicola, I am.
Confident and vocal and all kinds ofthings, but there's never a feeling when
I go to the doctor that I'm managingto get the information across in a way
that they're willing to understand.
Um.
The last time I recall I was in thedoctor and he said to me that it
(17:23):
felt as though I was in, I was takingcontrol and in inappropriate in the
way that I was describing things.
Um, and he said it in sucha way as to not be entirely.
Offensive, but kind of like downcastas though he felt as though he
(17:45):
should be doing something and Ishouldn't be quite as proactive.
So it, it's just a minefield whenyou're autistic going to the doctor.
Sometimes I. It's important what that,one of the meanings of the word patient
is that you have to be, you know, the,the subservient party in the relationship.
I was thinking this week about herbsand how like, you know, when you
(18:09):
use herbs for, say, medic medicatingor health, it's, you establish
a kind of relationship with it.
And that's kinda what happens whenI find, when I go to the doctor, I'm
kind of going there to get some kindof story, you know, um, something
that can take home and digest.
And it's kinda like forming arelationship with the doctor and the
(18:32):
services I. In order to like comeback to myself as it were, and taking
a medication's kinda like that.
It's got this brief period of time,it's like 28 days or something
like that, and it's like that'syour relationship at that point.
More it than that, but Ijust sort of throw that in.
I was held out, uh, against my willby a nurse, partic practitioner When
(18:53):
I couldn't do an a mental healthassessment over the phone, she
wouldn't provide an alternative.
She just held me against my will.
Was it an emergency, Robbie?
I went there because I wasn'tcoping with being left to cope.
Look, care for my mother on my own.
My dad had been taken to the hospital.
(19:13):
They were supposed to be getting herinto home but didn't, and I nearly lost
it of her because she was so demanding.
And I went for help.
And what I got was beingheld against my will.
When I complained about it, they,she lied and said she was only
strongly advising me not to leave.
Well, I had two witnesses in theroom that had to agree to keep me,
(19:37):
me at their shop if they let me out.
So yeah, that's that negative side word.
Others take over the relationship.
I guess I've had a, um, a groundinginside and also outside the NHS
because I worked for them for yearsand now I'm on the other end of that.
(19:59):
So I'm quite lucky in a way to havehad that experience because now going
to the doctors, I'm a little bit moreclued up on the way methods help people
do things there, you know, um, being.
Friends with the doctors I, that I knew.
Um, it just felt when I go into,I'm not, I'm not worried about it,
(20:19):
but I think that's generally todo with just having, uh, an inside
view and an outside view of it.
I can see it from both perspectives.
Yeah.
And a confidence in theservice I would imagine.
I mean, there's the, the, the, thehealth service Service has not been
very well itself for a long time.
And there was, uh, you know, there's,there's just too few places of doctors
(20:42):
and too many people who need us.
Um, but that's part ofthe job is to tackle that.
To tackle, um, people who, who reallydon't find it comfortable and Oh, yeah.
Yeah.
I mean, it's, it, I've done everythingfrom, you know, trying to work
with drug addicts to just the,just the man on the street really.
I've learned it isn't safe to go todoctors if I'm feeling depressed because
(21:06):
their keenness to lock, lock, lock peopleup and it's the, with social workers
or any other organization with powers.
To lock people up.
I was told that there's an autism card youcan get explaining your situation a bit.
Like say your diabetes card orsomething, so that if you have
(21:27):
a, you know, a, a burnout or,what's the word I'm looking for?
I keep wanting to say lockdown.
It's not that, uh, but if youhave a bad situation in public.
Rather than be arrested somethingor the police be called, you know,
you, the card can be shown orobtained to explain your situation.
Have I got that right?
(21:47):
The problem I have is I'm liable toexpress suicidal force during a meltdown
and as an automatic lockup offense.
We have considered creating a card forautistic radio that, um, people can
carry in their wallet that has the, um,photograph of the person on it so that it
can't just be passed from one person toanother with very similar information, but
(22:10):
also with a QR code so that if somebody.
Use their phone.
They could go to a website andpick up some more information.
What do people think aboutcarrying something like that?
I'll be looking at putting somesort of cards together with my
therapist to tell 'em what I needhelp with because I don't need.
(22:31):
Medication or locking up.
I need a situation fixed becauseoften something like getting
stranded that overwhelms me.
Yeah.
So I, I, I ha I do carry cards.
I have, I do have an e like anemergency card that I have in my wallet.
And I do have a thing that I can put,you know, I've got a sunflower la lanyard
and I do have a thing there as well.
(22:52):
But like I say, I've had a couple ofstraight outfits in public PA places.
Three of them.
Um, one in Tesco's, one inOxford Street in London.
Um, and, uh, while when I was living inMilton Keynes, and, you know, without
those things with me, I guess, youknow, at least it gives you the basic
name, address, that sort of thing.
A lot is knowing how toword things so it doesn't.
(23:15):
Trigger people doing harmful things.
Yeah.
The concern for me is that most ofthe things I've seen out there though,
I can see they have a use and peoplehave texted to say they have a use.
Um, they're generic.
What I was considering was a QR codeon the card, which gave something
specific to the person that theperson could update themselves.
(23:39):
I went a long time.
We workshop yesterday, I thinkit was Amaze and Arg had put
it on about access riders.
And it sounds, um, a bit like that,that it, this idea was like, um,
having a little profile that you couldshare with people you were working
with to be like, um, you know, this,this is what I need to be able to
(24:02):
kind of work in your environment assay, if somebody was like, needed to.
Perform in a space or whatever and it,um, there was that bit of work about
breaking down what your essential andwhat your desirable like needs were.
Um, and I could see how that couldmaybe be something that would work
with the QR code idea quite well.
(24:23):
It would also need to be old school,so there would need to be a little
sort of foldout piece of paper thatsomebody could read if they didn't
have access to a phone or whatever.
The Data Protection Act has been thecause of majority of my problems.
This week, outta the blue, whileI was walking my dog, um, someone
(24:43):
caught my eye, came over to me andstarted talking about how they'd been
diagnosed as having, um, oh, DHD.
Is that the one that'slike m. A DHD and autism.
Yeah.
And explain their situationin quite a hyper way.
Um, it was interesting listening,you know, because I, I kinda observe
(25:05):
some of these people in my area, um,as part of the community and, um,
you know, passing acquaintances as itwere, you know, but I don't like to
get too involved with other people.
Um, so, um, for him to have the confidenceto just speak to me about that, found
it all a bit odd but interesting.
(25:26):
And I'm a kinda open guy,so maybe that was it.
I was relaxing for him.
My dog was a median thing, you know.
Um, I'd observed this guy overthe years, you know, and this was
just kinda in a sense, a kind ofconfirmation if some things I'd sensed.
Um, and there's a lotof it around in my area.
It makes me wonder if there's somekinda community, you know, whether
(25:48):
they're interrelating in anyway or they're all on their own.
Um, so it's odd to know how to relateto it, you know, because for me,
relationships mean commitments attimes, you know, and it's like how much
do you want to really get involved?
I know that sounds horrible,but that's just how I am.
I think as humans, we allkeep an eye on each other.
(26:09):
So if this guy has noticed you andyou've noticed him over a period of
time, it's likely that there's a bitof the birds flock together principle
that he's identified either somethingin you that's comfortable or something
in you that makes you trustworthy,and it may even be your own autism.
(26:29):
Yeah, I sense that.
But there's also wee biting me that getstriggered, which goes way back to school.
When the bullies used to like smellyou, you know, they could smell your
fear and they would hone in, you know,like, here's a soft touch, you know?
Um, and take advantage, maybe exploit.
So it's kinda triggering for meof really kinda old kind things.
(26:54):
I suppose realizing that means thatyou're in a bit more control than you
would've been in the past, and that youcan make a choice about that as to how
far you let somebody into your spaceor even into a conversation with you.
Just knowing that it's informedby some kind of trauma from
the past is valuable and.
(27:16):
Empowering you said aboutmaybe it sounds horrible.
It definitely doesn'tsound horrible to me.
It sounds quite relatable, um,like of you to have a reserve.
Um, for me, I feel my autism's definitelymeant that there's a situations where I've
just found social stuff really, reallyoverwhelming and it's led to like harm.
(27:40):
Um, and it just, it's.
I think there's that double-edged thingwith being aware that some things can
come from a place of like trauma, becauseobviously there's that, okay, I might, I
might have this lens on, but there's also,well, I've learned that this is the way
that life is and I'm not gonna continueto keep making the same mistake again.
(28:01):
And for me, that has been dec thathas been decided to have my own
idiosyncratic boundaries, um, sociallythat make me happy, quite frankly.
Yeah, no fear appearing standoffish or,you know, uh, it's almost like not wanting
to fall into that sa falling for thesame person again and again, you know?
(28:24):
'cause you kinda need something.
Uh, so, but also, yeah, as you say,but long in the tooth, you know, if
you've been around a bit, you know,you can realize that some people,
you don't wanna prejudge people, but.
It's a natural weariness of, um,people who live certain lifestyles.
Do you know what I mean?
Yeah.
For me, it's been an awareness thatlike there are people who are, we'd
(28:47):
all kind of try to meet our ownneeds and there are some people
who really will not care about.
Squashing some, somebodyelse to get their needs met.
And it's just the reality of lifethat, that, that does happen.
Not everybody, um, is like that.
There's lots of people who willwant to like be respectful and
(29:10):
have like reciprocal, I don't know,more like fear, eh, connections,
but sometimes there's not, and.
In the past, I definitely wouldbe taken in through eh, sympathy,
empathy sometimes as well.
So it has made me a bit more reserved.
(29:31):
Um, but it's, I think like I've started tolearn that it doesn't make me like a nasty
person or a bad person to have boundaries.
And sometimes, one of them, for methat's been quite live lately is that.
Like when I'm, if I, if when I'm outwalking my dog, like I actually sometimes
find myself quite overstimulated.
Um, and it's not a great placefor me to sort of be social.
(29:53):
So I've given myself permission to belike, when I'm walking my dog, it's
me and my dog and I'm walking my dog,and that's what I'm concentrating on.
And it doesn't make me a horrible personif I don't like make an effort to.
Speak to like people in the streetand things like that, or like you'd
reply to hellos and things like that.
It's okay just to kind ofconcentrate and get on my way.
Um, but yeah, like I had lots ofwee stories about like how I was.
(30:17):
Like, not like, you know, bad somehow.
Well, walking a dog is kindalike a, a private space.
Sometimes it should be respected, butI've also been reflecting on how a lot
of people in the autistic community, um,refer to using substances in their lives
as a form of connection and belonging.
(30:38):
So that social side to using substancesrecreationally is an aspect of
what's going on in the areas I live.
Um, and that's what I'm wary of becauseI can't even imagine now how I went
through all that when I was younger,you know, and lived that lifestyle.
I didn't realize how vulnerable I was.
(31:00):
It was crazy.
Yeah, I got freaked out thisweek actually by somebody.
Um.
Who just kind of talked, talked abouttheir drug use quite kinda casually with
be it, and it was somebody that was.
Really in a professional capacity.
So it was a real kind of like,oh, it was a, a workman or
something, um, a contractor.
(31:23):
And it made me feel really like, unsafe.
And it was just like, uh, can't, I'm, Idon't have the skills to like deal with
like, keep like social stuff when I'msober and without any alarm system like.
I certainly don't, when in myyounger years it was like, I
was like, oh, if I drink twoglasses of wine, I can socialize.
This is great.
(31:44):
Um, but it really wasn't greatand um, I really kind of now.
Like, I think the last time that I didn'tfeel anxious was when I had a pre-med
of like, propanolol, um, was the lasttime I didn't have like, just some, some
sense of like, but that is kind of, nowI'm, I'm like, nah, I can respect that
and I can just try and keep it to amanageable level by looking after myself.
(32:08):
But yeah, substances really,I can understand the draw.
That's an interestingsubstance you mentioned.
See, when I have tradesmen around andI smell their van and it smells of
weed, you know, I start freaking outabout the quality of the workmanship.
Yeah.
Like, I, I don't, I don't, I'm notworried about, I. Like cannabis and stuff.
(32:29):
And I've know loads of people,craftsmen who like their quality to
like the quality of their work's.
Amazing.
And, but it's more when it's, yeah,like this treatment just suddenly
dropped in about like havingto take your cocaine and stuff.
And I was like, this isinappropriate that it just makes
me feel really uncomfortable.
Like, I don't like it when people kinda.
(32:50):
I like, oh, don't come out your box.
Like you're meant to be just a workmanand didn't really know how to speech
you in the first place and now you'vegone and say something off the wall.
And then I'm like, now I'm worrying loads.
I'm like, did you think it's okay?
Just 'cause I do.
I dress like somebody who takes drugs.
What's going on here?
So, yeah, it didn't do, it didn'tdo my stress levels much good.
(33:11):
And I was like, it took me quite a whileto notice that I was stressed by it.
So I think it was about a dayor so later that I was like,
oh, that's why that bothered me.
No.
Nicola, that was very inappropriate.
I thought so, but it's like, I don't have,like, I, I feel like, 'cause sometimes,
unless I've like spoken about stuff topeople, I'm like, I feel bad about that.
But maybe it's just me beingoversensitive, you know, like,
(33:34):
like that old gas like comes back.
I mostly try and make sure that I'vegot somebody round when workmen come,
but workmen are the worst becausethey just have their own agenda.
And I think, I think that they thinktheir work is just so important
and they're so needed that we'vejust got to dance to their tunes.
So it's like there's nonotice of when they're coming
(33:54):
sometimes and they change it.
And then sometimes they're like, oh, I'mgonna be here between eight and four.
And I'm like, that's just that.
How is that?
How.
Wee bit like GPS in the healthservice sometimes, isn't it?
Yeah.
I'm trying really hard to makesure that I like, maintain
this property well and stuff.
Um, like before I understoodmy autism, like it was just, I
(34:18):
would used a lot of avoidance tocope and, um, like just didn't.
Just bury my head in the sand aboutstuff and I'm trying to just do things
correctly and stuff, but it's not easy.
It's not easy.
No, not at all.
It's like being a gatekeeperof your own private space,
Well, it's 5.
(34:39):
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,
(34:59):
but the people here have given permission,so that it's an example for others.
See you again.
Always.
Reliably.
Sunday.
444pm.
Cheers guys.
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Hi there.
Every Sunday a group of autisticpeople get together and drop in.
(00:25):
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
that we have about our own autism.
Cheers, enjoy.
(00:48):
On the subject of entertainment, hasanybody anybody been watching the um,
series, um, where they have a group ofneurodivergent and learning disabled
people interviewing public figures?
Yeah, the assembly, uh, myinitial reaction was quite a
(01:08):
bit of discomfort about it.
I think I've mentioned this beforeabout how a lot of TV is edited
and scripted and emotionallytriggering, you know, intentionally.
So, uh, but there was a bit of me askingquestions to myself about it today,
about the inappropriate I. And there wereone or two questions that really struck
me during it that were inappropriate.
(01:31):
Well, I'm not criticizing that the,they what are seen as like, well,
you would expect somebody likemaybe David Tennant or Gary Ker to
say that's a bit rude, you know?
But they took it on the chin.
So there seemed to have been some kind ofagreement beforehand that anything goes,
which is kinda like the, um, the motto.
(01:53):
The introduction that ismentioned, anything goes.
Um, but the natural reaction I wouldimagine of a neurotypical person
would be to say, oh, I don't knowabout that question or whatever, but
they really seem to entertain thiskind of given communication mode.
So anyway, just be thoughts.
(02:13):
Yeah.
They, they explained the premiseat the beginning that no question
is off limits, and it, it.
It builds into the autistic tropethat we ask inappropriate questions
or we share too much and thesethings, um, and runs with it.
And I, I, I think it worksquite well to be honest.
(02:35):
I. Yeah, it does seem to open upan emotional scenario, you know,
a connection, um, that may nothave previously happened or been
experienced, but that's whereI get the discomfort in that.
I think it might be edited that way.
Yeah, I get what you mean.
I can see that there are somevery, um, close editing points
(02:58):
and very short snippets that.
Sort of build into a shape that isdetermined by the producers, but in
some ways I, I see it as a very positiveexample for non-autistic people to
relate to the neurodivergent people.
Um, and learning disabledpeople as a, as a group.
(03:23):
They, they call themselvesneurodivergent and learning disabled.
Yeah, there does seem to bea variety of people there.
There's a kind of, well,there's characters who appear
quite regularly, aren't they?
They're kind of like the, the characters.
Um, I like those moments, like thelong pauses where it's quite difficult
for someone to communicate well, likeis a, a funny word, but admire those
(03:47):
situations where they let that linger.
Because that is novel.
It doesn't come across as patronizing inthe normal way that, um, people who are
from a marginalized community are, arekind of put up there and isn't it amazing
they're managing to do this, you know,like a dog on walking on its hind legs.
(04:10):
They've actually got.
A really good singer who isfronting their band and the people
in the band can actually playtheir instruments to a degree.
So it, it does seem as thoughthey've been careful to make sure
that it's not just, you know,autism's got talent and patronizing.
(04:31):
Yeah, I've been looking atthe reactions of the guests.
You know, and, uh, the difficultmoments they may have in, um,
react the reactions basically.
Um, it's very strange and a lotof ways, a lot of them are actors.
Um, so you kind of know how to playa role, but I. It's a strange one.
It's like I was even thinking like,how much are they empathizing with
(04:53):
this whole community and feelingtheir way into it and thinking,
well, yeah, I accept a lot of thingsabout myself, but what am I really?
Hi everyone.
I'm a bit late dropping in today.
My eldest was back from Cadet camp.
Um, so we were justgetting in the door there.
Um, but hello Cadets.
(05:17):
Is he an Air Force cadet?
Did I remember that correctly?
No, she's still in, um, army Cadets.
So it was field craft there.
It was quite cool there.
Um.
There, the, the person who led itmade the major, um, is out out, um,
very visibly, very out and about,out about his autism as well.
(05:37):
So he, she said that he was just runningaround smiling so happy because she thinks
that he absolutely loves field craft.
I mean, hearing about Ear Air ForceCadets from other, uh, folks this week.
It sounds brilliant.
Yeah, Lucy was an Air Force cadet.
I was an Air Force cadet, and I thinkwe both spoke about stripping down a
brain gun and putting it back togetheragain, which I thought was really cool.
(06:00):
I enjoyed that part of it.
The marching part, not so much,but the, but actually doing
the practical stuff was fun.
Did I ever mention I got kicked outtathe Cubs for wearing someone else's
jersey with their minute badges on them?
Hey, Gary, you're on camera.
I'm certainly looking forward to sendingout the, um, studio to gr so that uh,
(06:23):
it's easier for him to take part in this.
So, sorry, back.
Sorry.
Hi.
Sorry.
I've just, I prepare of nothing.
I've had a very, very badmedical week this week.
Um, lots of things have happenedin this book in the, uh,
course of the last five days.
Um, and, uh, I'm going to begoing to a lot of hospitals
and me having a lot of tests.
(06:44):
Um, they found a problem with my heart.
Um, they've found, uh, I've had, I'vebeen told by the dentist that my teeth
are no longer viable and I'm gonnahave to start thinking about dentures.
That's gonna be fun.
Um, um, on top of that, I've been,uh, run ragged with doctors calling me
about this and calling me about that.
Seems every test I've done.
(07:06):
Sorry, Lucy, he didn'trealize you were talking.
Carry on.
No, no, that's okay.
That's okay.
Yeah.
So, um, I, I, I've got to have a,a back trips down to the hospital.
Um, I've got this thing where in my heart,um, I can't remember what it's called.
I think it's elongated QC qt, but itbasically means the little electrical
pulse that keeps your heart going.
(07:27):
It's not really working on mine.
Um, and so the spark that makes yourheart beat at a regular rhythm has
decided that that's gonna con out.
So I've gotta go through that.
Um, I've gotta go through havingpossibly all my teeth taken out
and the den den is put in, um,because they're in a bad state.
My mouth is overcrowded and the teethjust aren't really viable anymore.
(07:49):
Um, I've had blood tests like youwould believe, thyroid tests and, um.
I've also been told aboutcholesterol that I've gotta train.
I'm, I'm honestly speaking, this has beena week where I've just been backwards
and forwards to a doctor all week.
So I'm so exhausted with it all.
But it's also also a little bitalarming 'cause some of the things.
(08:10):
Because some of the thingsthey're saying are just quite big.
I hear you, Lucy.
That's, um, that's quite a big deal.
But fortunately we have, um, ahealth service in this country,
so even poor people like ourselvesget access to, um, to doctors.
And most of what you're experiencingwill become a lot easier, I'm
(08:32):
guessing, over the next few weeks.
Yeah, except with the, withthe dentist it's sort of
money, money, money with them.
So.
Um, they did course they ask if I wantthis particular course of treatment and I
just can't afford to do it, so I'm havingto go the, the, the poor person's route,
unfortunately, which could end up with me.
(08:53):
Um, yeah, I'm, I, might I have a Hollywoodsmile, I guess Then if, uh, if all kind
of goes the way I think it is going to.
Lucy, was it you that was sayingonline you had to accept a dental
plan or you would lose your placeon the NHS Um, dental eligibility.
Yeah.
So, uh, down here, um, youhave to have a dentist.
(09:18):
Obviously every is supposed to have adentist, but there are the NHS dentistry
is so, so bad now that it's very rarethat you actually find yourself a
place where they'll take you on as apatient, which I found, uh, through
just searching and search and searching.
Now the problem is, is that these arealways run through private clinics.
So you have a private, uh, dentalsurgery, which will have a number
(09:42):
of NHS patients on board as well.
Uh, they make an appointment for you ifyou don't keep that appointment or you
cancel it too late, or if you cancel morethan two in a row or something like that.
There's lots of differentways you could do it.
You get unceremoniously kicked.
Off of their list and you could nolonger get NHS treatment from them.
(10:03):
Um, I've had this before.
My last gp, my last dentist, I misseda checkup and I was told that I was no
longer, um, a patient on their list.
So yeah, this is what happens here.
I'm sure though, with prior warningor like I think up here, it's like
you've gotta give 24 hours noticeif you've gotta change of plans.
I know how anxious itcan be attending dentist.
(10:25):
Uh, I remember a friend of mine used toalways have to get Valium before he went.
I just wonder if they stillprescribe that for nervous patients.
Yeah, they do.
Um, not that I'm a nervous patient.
I'm, I'm actually a pretty stoic patient.
I've had a lot of teeth out in my timefrom when I was a kid right up to now.
Um, but uh, I think it's about,yeah, you do have to give a
(10:47):
solid reason for not going.
And yes, they still give diazepam.
When I took to surgery, um, theyused to come in, people used to come
in regularly for just a days event.
Diazepam tablet to get themthrough the dental work.
See, that's and aboutall the doctor stuff.
I was at the doctor's this week andum, I had to get bloods taken while
(11:08):
I was getting my blood pressure done.
After that, I ended up passing out.
Which was really inconvenient.
I hate going to the doctor.
Um, but I did get some migraine treatment,so I've, this week I've been able
to medicate a migraine and not beingjust paying for three days solids.
(11:29):
So I. It was a bit scarytaking a new medication though.
But it's not gone too bad.
I would, I wouldn't say it'sworked a hundred percent, but it's
uh, really taken the edge off.
Yeah.
Finding the migraine medicationsa real battle for a lot of people.
Had friends who went through lotsof different treatments before
they found something that worked.
(11:50):
I'm not the worst at dentists andhonestly speaking, um, I do, I do
manage to, I have a little happy place.
I go to a dentist and doctors and thatwhere I can, I can kind of hide myself
away in this safe place in my head.
Um, I've had quite a lot done.
I had when I had, um, you probablydon't wanna know how my hat,
(12:11):
the ins and outs of my mouth.
My mouth, but I've had threeteeth taken out the top and I had
my, my, uh, uh, both of my, um.
What do you call it?
Uh, the teeth at the back,uh, taken out and wisdom.
Yeah.
Wisdoms.
That's it.
Thank you.
I have wisdoms taken out.
I've had all these taken outand I've hardly flinched.
It doesn't really bother me.
(12:32):
You know, I've got thisgood zen place that I go to.
Um, but, uh, you know, it's, it'sjust all feeling a bit too much.
Uh, only because I've got somany other things on the go.
It's gonna be, it's gonna behospital room after hospital
room after ho hospital room now.
Um, and it's mainly reallydepressed at the thought that
I've got so much I've gotta do.
Um, I'm almost like really about tolaunch you into my dentist and say,
(12:56):
I don't want all, all the, the, theperipherals to go with it, just.
Just get rid of the teeth and,you know, send me on my way.
'cause Oh, heal.
It'll get better.
I'll get used to it.
Sounds like it's all coming at once.
The, the, you may hit a period whereyou, you'll just have to wait for a
few things and then it'll stretch out.
I, I can remember when I turned 50,a lot of things just hit at once.
(13:17):
And I'm going to saythis in an amusing way.
I'm not even a woman, you know,because there's additional stuff
I, I know when you're a woman.
Uh, but when I turned 50 it was like.
Losing parents and then, youknow, I had to get a colonoscopy
and then a couple other things.
And they were all dead, dead heavy at thetime, but, uh, within two years they were
(13:38):
kinda, it was all over and it was throughthe tunnel as it were into something else.
'cause things move on, don't they?
But it's intense whenit all hits you at once.
Oh, sorry.
Just one last thing is that they havedecided, because I'm on a particular
medication, I'm on Quetiapine, whichis an antipsychotic that I've been
taking for about a decade and a bit.
(14:00):
Um, and it's worked very well.
But this is one of the things they thinkmight be called is in my heart condition.
I. So they're gonna take me off atthat probably at some point, but then
they want to send me back to the mentalhealth unit for some reason as well.
Uh, that has no ulcer been cited thatI think I need to go back to the,
to, to the local mental health team.
Um, not quite explained why.
(14:20):
Um, perhaps they're incharge of the medication.
I'm hoping that's what it's for anyway.
Maybe they're just ticking boxes.
You know how it's like procedurewhen we do this, we do that.
I'm just thinking about what, whatyou were saying about your heart is.
Equivalent what they used the termirregular heart rhythm or heartbeat.
It's not specifically that, butit can lead to that because of
(14:41):
the fact that your, your heart'snot firing at the rate it should.
So, you know, it is, it, it, the, the,the electrical pulse that gets your brain
to your, um, your heart to start up.
Uh, it's kind of delayedand kind of delayed.
So, uh, it can lead to othercomplica complications like
arrhythmias and things like that.
So they need to kind of nip it in thebud now or try and work out what's
(15:03):
going on because they really don't wantme to end up with a heart arrhythmia,
which could be far more dangerous.
Yeah, we have to be careful when we'retalking about health 'cause we can go
down rabbit holes and get a bit newer.
Well, I can, you know, so, uh,I'll temper what I'm saying.
I am guessing one of the reasonsthat, um, you have to go back to the
mental health unit is because 10 yearson any one of these antipsychotic
(15:29):
drugs has implications, and thelikelihood is that they're gonna want
to monitor that withdrawal process.
In my.
Guesstimate, um, maybe you should, um,do some Googling of or get somebody
else to do some Googling of theactual, um, procedure for reducing that
(15:50):
particular drug and see what it comesup with, which I have, by the way.
Um, I never let, let things lay justsort of, they don't just let it lie.
So I have had a look and it is along and winding roads to the yp.
Well, I mean, you know, dependency,I guess guess the word would be so,
uh, it's going to be what they'regonna put me on, uh, afterwards.
(16:14):
I don't know.
I really just don't know onthe same subject in the text.
Um, somebody says that they're notlistened to by their doctor, so they don't
feel there's any point in going there.
Yeah, I was gonna read thatcomment out and comment.
As well to say that, yeah, it tookme like 11 years to manage, to get
(16:34):
a doctor to like listen to me andtreat the migraines I was having.
And it's like.
I really had to kinda work onself-advocacy and it's been really hard.
Um, so yeah, I can, I cansympathize with that, um, with
get, with being in that mindset.
And I, I definitely gotthere myself for a long time.
(16:56):
Yeah.
I'm, I'm with you there.
Um, Nicola, I am.
Confident and vocal and all kinds ofthings, but there's never a feeling when
I go to the doctor that I'm managingto get the information across in a way
that they're willing to understand.
Um.
The last time I recall I was in thedoctor and he said to me that it
(17:23):
felt as though I was in, I was takingcontrol and in inappropriate in the
way that I was describing things.
Um, and he said it in sucha way as to not be entirely.
Offensive, but kind of like downcastas though he felt as though he
(17:45):
should be doing something and Ishouldn't be quite as proactive.
So it, it's just a minefield whenyou're autistic going to the doctor.
Sometimes I. It's important what that,one of the meanings of the word patient
is that you have to be, you know, the,the subservient party in the relationship.
I was thinking this week about herbsand how like, you know, when you
(18:09):
use herbs for, say, medic medicatingor health, it's, you establish
a kind of relationship with it.
And that's kinda what happens whenI find, when I go to the doctor, I'm
kind of going there to get some kindof story, you know, um, something
that can take home and digest.
And it's kinda like forming arelationship with the doctor and the
(18:32):
services I. In order to like comeback to myself as it were, and taking
a medication's kinda like that.
It's got this brief period of time,it's like 28 days or something
like that, and it's like that'syour relationship at that point.
More it than that, but Ijust sort of throw that in.
I was held out, uh, against my willby a nurse, partic practitioner When
(18:53):
I couldn't do an a mental healthassessment over the phone, she
wouldn't provide an alternative.
She just held me against my will.
Was it an emergency, Robbie?
I went there because I wasn'tcoping with being left to cope.
Look, care for my mother on my own.
My dad had been taken to the hospital.
(19:13):
They were supposed to be getting herinto home but didn't, and I nearly lost
it of her because she was so demanding.
And I went for help.
And what I got was beingheld against my will.
When I complained about it, they,she lied and said she was only
strongly advising me not to leave.
Well, I had two witnesses in theroom that had to agree to keep me,
(19:37):
me at their shop if they let me out.
So yeah, that's that negative side word.
Others take over the relationship.
I guess I've had a, um, a groundinginside and also outside the NHS
because I worked for them for yearsand now I'm on the other end of that.
(19:59):
So I'm quite lucky in a way to havehad that experience because now going
to the doctors, I'm a little bit moreclued up on the way methods help people
do things there, you know, um, being.
Friends with the doctors I, that I knew.
Um, it just felt when I go into,I'm not, I'm not worried about it,
(20:19):
but I think that's generally todo with just having, uh, an inside
view and an outside view of it.
I can see it from both perspectives.
Yeah.
And a confidence in theservice I would imagine.
I mean, there's the, the, the, thehealth service Service has not been
very well itself for a long time.
And there was, uh, you know, there's,there's just too few places of doctors
(20:42):
and too many people who need us.
Um, but that's part ofthe job is to tackle that.
To tackle, um, people who, who reallydon't find it comfortable and Oh, yeah.
Yeah.
I mean, it's, it, I've done everythingfrom, you know, trying to work
with drug addicts to just the,just the man on the street really.
I've learned it isn't safe to go todoctors if I'm feeling depressed because
(21:06):
their keenness to lock, lock, lock peopleup and it's the, with social workers
or any other organization with powers.
To lock people up.
I was told that there's an autism card youcan get explaining your situation a bit.
Like say your diabetes card orsomething, so that if you have
(21:27):
a, you know, a, a burnout or,what's the word I'm looking for?
I keep wanting to say lockdown.
It's not that, uh, but if youhave a bad situation in public.
Rather than be arrested somethingor the police be called, you know,
you, the card can be shown orobtained to explain your situation.
Have I got that right?
(21:47):
The problem I have is I'm liable toexpress suicidal force during a meltdown
and as an automatic lockup offense.
We have considered creating a card forautistic radio that, um, people can
carry in their wallet that has the, um,photograph of the person on it so that it
can't just be passed from one person toanother with very similar information, but
(22:10):
also with a QR code so that if somebody.
Use their phone.
They could go to a website andpick up some more information.
What do people think aboutcarrying something like that?
I'll be looking at putting somesort of cards together with my
therapist to tell 'em what I needhelp with because I don't need.
(22:31):
Medication or locking up.
I need a situation fixed becauseoften something like getting
stranded that overwhelms me.
Yeah.
So I, I, I ha I do carry cards.
I have, I do have an e like anemergency card that I have in my wallet.
And I do have a thing that I can put,you know, I've got a sunflower la lanyard
and I do have a thing there as well.
(22:52):
But like I say, I've had a couple ofstraight outfits in public PA places.
Three of them.
Um, one in Tesco's, one inOxford Street in London.
Um, and, uh, while when I was living inMilton Keynes, and, you know, without
those things with me, I guess, youknow, at least it gives you the basic
name, address, that sort of thing.
A lot is knowing how toword things so it doesn't.
(23:15):
Trigger people doing harmful things.
Yeah.
The concern for me is that most ofthe things I've seen out there though,
I can see they have a use and peoplehave texted to say they have a use.
Um, they're generic.
What I was considering was a QR codeon the card, which gave something
specific to the person that theperson could update themselves.
(23:39):
I went a long time.
We workshop yesterday, I thinkit was Amaze and Arg had put
it on about access riders.
And it sounds, um, a bit like that,that it, this idea was like, um,
having a little profile that you couldshare with people you were working
with to be like, um, you know, this,this is what I need to be able to
(24:02):
kind of work in your environment assay, if somebody was like, needed to.
Perform in a space or whatever and it,um, there was that bit of work about
breaking down what your essential andwhat your desirable like needs were.
Um, and I could see how that couldmaybe be something that would work
with the QR code idea quite well.
(24:23):
It would also need to be old school,so there would need to be a little
sort of foldout piece of paper thatsomebody could read if they didn't
have access to a phone or whatever.
The Data Protection Act has been thecause of majority of my problems.
This week, outta the blue, whileI was walking my dog, um, someone
(24:43):
caught my eye, came over to me andstarted talking about how they'd been
diagnosed as having, um, oh, DHD.
Is that the one that'slike m. A DHD and autism.
Yeah.
And explain their situationin quite a hyper way.
Um, it was interesting listening,you know, because I, I kinda observe
(25:05):
some of these people in my area, um,as part of the community and, um,
you know, passing acquaintances as itwere, you know, but I don't like to
get too involved with other people.
Um, so, um, for him to have the confidenceto just speak to me about that, found
it all a bit odd but interesting.
(25:26):
And I'm a kinda open guy,so maybe that was it.
I was relaxing for him.
My dog was a median thing, you know.
Um, I'd observed this guy overthe years, you know, and this was
just kinda in a sense, a kind ofconfirmation if some things I'd sensed.
Um, and there's a lotof it around in my area.
It makes me wonder if there's somekinda community, you know, whether
(25:48):
they're interrelating in anyway or they're all on their own.
Um, so it's odd to know how to relateto it, you know, because for me,
relationships mean commitments attimes, you know, and it's like how much
do you want to really get involved?
I know that sounds horrible,but that's just how I am.
I think as humans, we allkeep an eye on each other.
(26:09):
So if this guy has noticed you andyou've noticed him over a period of
time, it's likely that there's a bitof the birds flock together principle
that he's identified either somethingin you that's comfortable or something
in you that makes you trustworthy,and it may even be your own autism.
(26:29):
Yeah, I sense that.
But there's also wee biting me that getstriggered, which goes way back to school.
When the bullies used to like smellyou, you know, they could smell your
fear and they would hone in, you know,like, here's a soft touch, you know?
Um, and take advantage, maybe exploit.
So it's kinda triggering for meof really kinda old kind things.
(26:54):
I suppose realizing that means thatyou're in a bit more control than you
would've been in the past, and that youcan make a choice about that as to how
far you let somebody into your spaceor even into a conversation with you.
Just knowing that it's informedby some kind of trauma from
the past is valuable and.
(27:16):
Empowering you said aboutmaybe it sounds horrible.
It definitely doesn'tsound horrible to me.
It sounds quite relatable, um,like of you to have a reserve.
Um, for me, I feel my autism's definitelymeant that there's a situations where I've
just found social stuff really, reallyoverwhelming and it's led to like harm.
(27:40):
Um, and it just, it's.
I think there's that double-edged thingwith being aware that some things can
come from a place of like trauma, becauseobviously there's that, okay, I might, I
might have this lens on, but there's also,well, I've learned that this is the way
that life is and I'm not gonna continueto keep making the same mistake again.
(28:01):
And for me, that has been dec thathas been decided to have my own
idiosyncratic boundaries, um, sociallythat make me happy, quite frankly.
Yeah, no fear appearing standoffish or,you know, uh, it's almost like not wanting
to fall into that sa falling for thesame person again and again, you know?
(28:24):
'cause you kinda need something.
Uh, so, but also, yeah, as you say,but long in the tooth, you know, if
you've been around a bit, you know,you can realize that some people,
you don't wanna prejudge people, but.
It's a natural weariness of, um,people who live certain lifestyles.
Do you know what I mean?
Yeah.
For me, it's been an awareness thatlike there are people who are, we'd
(28:47):
all kind of try to meet our ownneeds and there are some people
who really will not care about.
Squashing some, somebodyelse to get their needs met.
And it's just the reality of lifethat, that, that does happen.
Not everybody, um, is like that.
There's lots of people who willwant to like be respectful and
(29:10):
have like reciprocal, I don't know,more like fear, eh, connections,
but sometimes there's not, and.
In the past, I definitely wouldbe taken in through eh, sympathy,
empathy sometimes as well.
So it has made me a bit more reserved.
(29:31):
Um, but it's, I think like I've started tolearn that it doesn't make me like a nasty
person or a bad person to have boundaries.
And sometimes, one of them, for methat's been quite live lately is that.
Like when I'm, if I, if when I'm outwalking my dog, like I actually sometimes
find myself quite overstimulated.
Um, and it's not a great placefor me to sort of be social.
(29:53):
So I've given myself permission to belike, when I'm walking my dog, it's
me and my dog and I'm walking my dog,and that's what I'm concentrating on.
And it doesn't make me a horrible personif I don't like make an effort to.
Speak to like people in the streetand things like that, or like you'd
reply to hellos and things like that.
It's okay just to kind ofconcentrate and get on my way.
Um, but yeah, like I had lots ofwee stories about like how I was.
(30:17):
Like, not like, you know, bad somehow.
Well, walking a dog is kindalike a, a private space.
Sometimes it should be respected, butI've also been reflecting on how a lot
of people in the autistic community, um,refer to using substances in their lives
as a form of connection and belonging.
(30:38):
So that social side to using substancesrecreationally is an aspect of
what's going on in the areas I live.
Um, and that's what I'm wary of becauseI can't even imagine now how I went
through all that when I was younger,you know, and lived that lifestyle.
I didn't realize how vulnerable I was.
(31:00):
It was crazy.
Yeah, I got freaked out thisweek actually by somebody.
Um.
Who just kind of talked, talked abouttheir drug use quite kinda casually with
be it, and it was somebody that was.
Really in a professional capacity.
So it was a real kind of like,oh, it was a, a workman or
something, um, a contractor.
(31:23):
And it made me feel really like, unsafe.
And it was just like, uh, can't, I'm, Idon't have the skills to like deal with
like, keep like social stuff when I'msober and without any alarm system like.
I certainly don't, when in myyounger years it was like, I
was like, oh, if I drink twoglasses of wine, I can socialize.
This is great.
(31:44):
Um, but it really wasn't greatand um, I really kind of now.
Like, I think the last time that I didn'tfeel anxious was when I had a pre-med
of like, propanolol, um, was the lasttime I didn't have like, just some, some
sense of like, but that is kind of, nowI'm, I'm like, nah, I can respect that
and I can just try and keep it to amanageable level by looking after myself.
(32:08):
But yeah, substances really,I can understand the draw.
That's an interestingsubstance you mentioned.
See, when I have tradesmen around andI smell their van and it smells of
weed, you know, I start freaking outabout the quality of the workmanship.
Yeah.
Like, I, I don't, I don't, I'm notworried about, I. Like cannabis and stuff.
(32:29):
And I've know loads of people,craftsmen who like their quality to
like the quality of their work's.
Amazing.
And, but it's more when it's, yeah,like this treatment just suddenly
dropped in about like havingto take your cocaine and stuff.
And I was like, this isinappropriate that it just makes
me feel really uncomfortable.
Like, I don't like it when people kinda.
(32:50):
I like, oh, don't come out your box.
Like you're meant to be just a workmanand didn't really know how to speech
you in the first place and now you'vegone and say something off the wall.
And then I'm like, now I'm worrying loads.
I'm like, did you think it's okay?
Just 'cause I do.
I dress like somebody who takes drugs.
What's going on here?
So, yeah, it didn't do, it didn'tdo my stress levels much good.
(33:11):
And I was like, it took me quite a whileto notice that I was stressed by it.
So I think it was about a dayor so later that I was like,
oh, that's why that bothered me.
No.
Nicola, that was very inappropriate.
I thought so, but it's like, I don't have,like, I, I feel like, 'cause sometimes,
unless I've like spoken about stuff topeople, I'm like, I feel bad about that.
But maybe it's just me beingoversensitive, you know, like,
(33:34):
like that old gas like comes back.
I mostly try and make sure that I'vegot somebody round when workmen come,
but workmen are the worst becausethey just have their own agenda.
And I think, I think that they thinktheir work is just so important
and they're so needed that we'vejust got to dance to their tunes.
So it's like there's nonotice of when they're coming
(33:54):
sometimes and they change it.
And then sometimes they're like, oh, I'mgonna be here between eight and four.
And I'm like, that's just that.
How is that?
How.
Wee bit like GPS in the healthservice sometimes, isn't it?
Yeah.
I'm trying really hard to makesure that I like, maintain
this property well and stuff.
Um, like before I understoodmy autism, like it was just, I
(34:18):
would used a lot of avoidance tocope and, um, like just didn't.
Just bury my head in the sand aboutstuff and I'm trying to just do things
correctly and stuff, but it's not easy.
It's not easy.
No, not at all.
It's like being a gatekeeperof your own private space,
Well, it's 5.
(34:39):
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,
(34:59):
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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