April 22, 2025 • 40 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.
(00:24):
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.
(00:45):
. Hello?
Hi there.
From
last week, one of the thingsthat stayed with me was like.
I meant to it at the time, butI, I remember when my son got
diagnosed with autism and I waslike, I remember to somebody at the.
I was like a we signposting agency thatI'd called and I was like, I just feel
(01:08):
like I'm recognizing this in myselfand it's, these traits haven't like,
you know, they've not done me so well.
I feel like there's been gaps inwhat I've needed to have learned and
how will I lead them through that.
I wish there was a wee book that justtold you what you needed to sort of train
yourself and your kids to be able to do.
And she was like, well, funnily enough,we've made a wee booklet about that.
(01:30):
And I wonder like, this was likea, a resource specific to like that
organization, but it was so helpful.
Um, I'm about to get ambushed by children.
Hang on.
Okay.
It's safe, eh, but this book hadhad a look for it and it was really
cool 'cause it had like basic,uh, necessities that you need to
(01:53):
learn and then it had intermediate.
And then advanced and I was able to lookthrough it and specifically see some of
the areas that I'd only managed to getto like intermediate level at that had
left me feeling a little bit, like maybeleft me a bit vulnerable in the world.
So I think there are such resourcesexist and I, I kind of feel like
(02:15):
I know speaking for myself and.
I just sometimes feel like ifI can learn a strategy to do
something, I can manage quite a lot.
Like it just doesn't come intuitively.
Sometimes it doesn't come intuitively.
Others, it really does.
Yeah.
I'm wondering how the levelswe're gauged and of course,
(02:37):
um, strategies are, are good.
They're useful.
Yeah, I was at this PO point I was at, Iwas more at that rather than analyze it,
I was just like, cool, great resource.
Let me give it a go.
So I haven't really kind of like jelledinto the why, but I, I reckon from, from
when I was, sorry my dog when I was.
(03:00):
I studied like nursing.
Um, and one of the measures that theyused there was activities of daily living.
And I think that there's somefairly standardized, like, like sets
of skills that have been mapped.
'cause these kind of reminded me of that.
I'm gonna leave it just now, but
(03:22):
yeah, deal with the.
It's, it's just, I had a kindaknee jerk reaction there.
Here its kinda levels of,it felt like behavior.
And of course I'm very curious asto how this might apply to an adult.
'cause I'm assuming the book mightbe, maybe I should wait until Nico
(03:47):
comes back and says that she's got.
Time for attention.
She may be busy.
I think I might have missed abit about what Nicola was saying.
My sound went in and out
levels in a booklet.
Something to get a resource,something to get that you wish
you'd had when you were younger.
(04:09):
I. I dunno.
It feels like that's one of thetools out there and, but it's kind
of a limited, um, format really.
I would've been so keento find something better.
'cause it's the best thingthat I've found so far.
'cause it's helped me to be able to go.
Alright, so like say basic levelskills around like personal
(04:29):
appearance and hygiene, right?
You've got.
Can wash hands appropriately,wash his face, naked ears,
bath the showers appropriately.
Like I need.to get to that point actually.
And, uh, it talks aboutintermediate skills.
It can be like, puts dirty clothesseparately, selects appropriate
clean clothes for non-work time, you
(04:51):
know?
Um.
That was like, you know, that wasn'tstuff that came easily to me in
terms of functioning in the world,and I wanna be able to function
independently, and I ended up havingchildren, which meant that if I didn't,
then actually my, my parenting canbe seriously called into question.
Like, I need the nuts and boltsof like, what do I need to do?
What's enough because it's, it wouldfind when I was like in a goodle,
(05:15):
just myself, but when there's otherpeople, like I, there's a standard
that I had to meet and that this to me,
like kept, has kept me being able to likeparent alone and I wouldn't have had it.
I don't have any better tools than this.
And then it's like when I, it talksabout advanced skills, if selects
appropriate clothes for warm cold weather.
(05:36):
I got caught out withthat so much until like.
Like I was probably late thirties, likewashing can set clothes for machine wash,
like dry cleaning can choose a hairstyle.
I mean, so, you know, there's some ofthese things that are not, these are,
it's like, help, help me see, like,why am I not, why am I not functioning
(06:01):
with all these other people whenI don't feel like I'm lacking in.
Perception, and
so it's a bit like a.
Almost a, almost like a training programor a, or a checklist to make sure, are
these things that we've picked up fromsomewhere are these schools that have
(06:24):
either been passed on to us by a parentor carers or, and I suppose there we
go to the whole thing that an awfullot of autistic people don't have an
adult that is passing on these skills.
A lot of people in care, a lot of peoplein institutionalized environments.
Yeah.
I, I'm starting to getwhere you're coming from.
Oh, I dunno if you know it, Lucy,but your microphone's open so
(06:47):
we are being able to hear you.
What you know, tting, whatever.
Yeah, it did so much.
Give me the toolkit, but it gave me thekind of like, almost like the a, a tool,
which was the ability to break stuff down.
Like for me, I need to break my tasksdown quite a lot to be able to do them.
(07:11):
Like, and find ways tosort of stack them as well.
So this, these are kind of thebooklets all call it developing
skills for independent like living.
And I don't know, I feel like when I foundsomething that I wasn't managing to do, it
gave, it made it a lot easier for me to goand then find a resource, whether that's
like being an online resource like a.
(07:34):
I don't know, pla like, there's quitea few like things that I found online,
but then I've been able to find, findthe stuff in my community and you know,
I think people have sometimes asked melike how I've met some of my other neuro
divergent friends and I suppose it's likeit's been through like seeking out that
(07:55):
support and like being around other peoplewho have been receiving that support and.
Adult learning at the ourschools has been quite helpful
as well around here for that.
And I guess it's like there's a, it's,I think one of the things that, uh,
could be hard to deal with is like, it'swith the spiky profile stuff because.
(08:20):
Like, I've got a first class, like honorsdegree, but I still needed like ma like
masses of help with some, um, otherskills that really like sideline my life.
And yeah, I had to sort of probablyswallow like pride almost, um,
to start to accept that help.
(08:43):
But it's.
It's been worth it because like my life isa bit like, it's much less of just chaos.
Did you find life skillseasy to adopt and learn?
No.
Takes years taking meyears like and still.
(09:04):
It's only like I kind of look back andI'm like, oh, I'm doing a lot better now.
But it's kind of, it stilldoesn't feel like it until I
kind of reflect on looking back.
Um, but I'm getting there slowly andit, it, um, I feel a bit more hopeful.
I used to feel really, reallydefeated by these struggles.
(09:25):
Do you feel you resist itor it's not natural for you?
I mean, I, I totally respectwhy you need it, you know?
Yeah.
Like I would, I think that my default is.
Like to, to day, like really, reallydeeply daydream a lot and not manage
my stuff, avoid things, be in deniala lot about what's actually happening.
(09:52):
And so it's, it's taken like I've got,yeah, it's taken a lot because it's not
my fault, but, um, it's, I have, in a wayit's like, it's a choice that I've made.
To do this in a way, because Icould just give up and be like, oh,
I just can't handle being a mom.
Do you know?
Which would've been an option,but I couldn't, I didn't choose
(10:17):
to do that, and so I feel like
I've had to, I've had to kindof find ways to function.
I, I think at the back of this, whatwe're talking about is success, Nicola.
Parenting is enormous.
Parenting two people is enormous,and parenting two people as a single
(10:40):
parent is another of enormous.
On top of that.
And then if we add the neurodivergence in,I recognize an awful lot of what you say
about feeling that there's block on doing.
But this is, this issuch a story of success.
Where you are now is areal story of success.
(11:03):
It's not gonna be easy because you'restill a fucking parent and it's not
gonna get easy until they show anawful lot more, uh, independence
than they are at the moment.
I was speaking with my owndaughter who in her today.
Oh, I'm so relieved.
You said that does get easier becauseI'm really worried that you're
(11:23):
gonna say it never gets any better.
And I was just like, oh, crap.
No, it's lovely.
You know, and, and, but it, it, it goesthrough really intense phases of you
think you, you just, not you, you feelfor periods of time as though you're
fucking it up, you know, tiredness, a.
(11:46):
The amount of stuff happening allat once and tiny little things
can sort of knock you off course.
I think it's a challenge if you'reneurodivergent being a parent,
particularly if you're a single parent.
Does it get better?
Yes.
Yeah.
Every bit of groundwork in every bitof things that you're doing now that
(12:07):
are helping your kids to communicatewith you, primarily because you
are.
Communications portal to the rest ofthe world, very much at the moment.
So the more you've got that youare communicating where you and
you and they understand each other,that is a real big foundation of
groundwork for everything that comes.
(12:28):
It just makes everything after easier.
And you know, the impression I get isthat you are, you're slamming that.
Yeah, it's good fun.
I think that the, one of the mostchallenging bit is being their interface
to the outer world as well, and that'swhere some of this like developing skill
stuff's probably come from because it'slike I have to be able to like work
(12:50):
the other people and not work them, butyou know, I need to be able to engage
with like go and doctors and sportscoaches and all sorts of things that.
I can, I could and like willat some point be able to just
absolutely choose like not to.
I see.
I, I seem a herbalistrather than a doctor.
(13:13):
Like I choose things that work for me,but with parent and there's been just
like, especially single parent andthere's been a lot more of a kind of, um,
engagement with life than.
I would've chosen, but I think I'mquite grateful for it because there's
been some really, it's, yeah, there'sbeen some really up upsides to that.
(13:36):
You definitely get forced into situationsyou wouldn't necessarily choose, and
then you end up benefiting from them inways that you couldn't have imagined.
You know, you get pushed into things.
You, you, you get pushed into thedeep end on so many things being a
parent, and some of those will workout and some of those will just be
flat on your face or a belly flop you.
One thing that's helped is I do feellike I carry a little bit of clown energy
(13:58):
with me and not always have, and like,so like I have made, I I, the four paths
that have happened, like I, I kind offeel a wee bit immune to like that.
Like I can laugh at myself and I cancope with being laughed at Laugh.
Yeah.
Laughed at.
Yeah, the clown thing helps.
(14:19):
That's been a lot with me this week.
I wonder if that resonates with otherpeople sometimes feeling you have
little archetypes that help you.
Well, definitely.
I mean, we've covered that slightly inthe conversations that we had when I
was, uh, abroad, that use of clowning,that use of the purposeful outside mask.
(14:43):
But also it, it being an actual part ofyou, a release the clown is it starts
potentially as a mass, but is also partof your personality in the end of it.
My, my wife uses it always has asa little girl and all the way up.
My daughter definitely has, and yeah.
(15:04):
What would you want to do with this?
Would you want to make this akind of slot on autistic radio
with like a structure orjust keeping it open as is?
Yeah.
A structure.
I was thinking, you know, make it a, inthe same way that you had a leaflet, maybe
even, well start by just going throughthe leaflet and do it as an audio thing.
(15:26):
I was just looking at theleaflet and thinking, oh,
this one's quite interesting.
'cause it had advanced and exceptionallevels of like interpersonal skills
and advanced is like, has someability to resolve conflicts with
others and exceptional, exceptional,able to deal with bullying.
Like that's, that's likea, a advanced skill.
But they're these, I dunno, it'slike they're all learnable as well.
(15:53):
Um.
Obviously that's like a lot of work, butit's almost like working on your avatar.
Yeah.
Working on your avatar, working on your,
your shell, your, your, your outsidefacing persona, the superpower,
(16:14):
the superhero that you put upas a, as a proxy for yourself.
I was meaning the kind of likethe part, you know, how there's
like, I want to change myself.
Like it's a strange, there's objectand subject and stuff there, but just
in terms of like, I kind of jokingabout that avatar, but it's the same.
(16:37):
It's like you're learning skills.
I just feel, I, I just, I dunno.
I feel like our brains arereally plastic and have like.
Capacity, but like I can't work 'em verymuch at a time, but over like huge, big,
long periods of time, it'd be like years.
You can, these things can shift.
(16:59):
And I'm not saying we're doing it for,you know, the system, but you were
doing it, like doing it because like,it's interesting, like to learn about.
I felt bullied, like when I rememberjust feeling like completely like
useless and hopeless about bullying,like as a younger person and now like
it's, you know, you, you start to learn.
(17:19):
It's got a bit of a pattern to itand then you realize like people have
been trying to spell out thesepatterns in different ways.
Brady's, I don't know abouta slot, and I'm not trying
to evangelize by saying this.
I'm just saying like, you know, this is
something that came up for me wasjust, I was thinking about how.
Booklet helped me out quite a lotand it was like developing skills for
(17:41):
independent living, a flexible guide,and I just thought that was kind of cool.
Like I could, if I'm quite happy justto get to like a, you know, basic
level and something, and that's great.
If I want to get onto like intermediate,like I could, I'm like right.
Okay.
Trying find one here.
It's like an intermediate one.
(18:02):
I get where you're coming from,
so accept
appropriate
footwear
for different occasions.
I've got one pair of shoes.
It could be a self-helpconversational expansion from us
to like personal experience thatworks for us that other people.
(18:28):
People who've got older and founda way around things just pass on
the information down the line.
Life hacks.
Cheat codes.
Cheat codes, life hacks.
Yeah, they, yeah, they'rethe, yeah, they're the kind
of metaphors, aren't they?
So this is not particularlyfor neurodivergent people.
(18:50):
If it's got.
I'm trying to get an idea of what the, whothe book is aimed at, particularly anyone.
It's got a flexible guide for, andthen a colon and a blank space.
And above it there's like,there's like a spectrum of red
(19:12):
and orange, yellow, greene, andmagenta with people on each different.
On this spectrum, and it was developed by
West Loath Council.
Uh, and there's some otherlittle icons that my eyes are
too old to see without EFOM,
(19:35):
maybe.
Oh, I see what you're saying.
The, the booklet originally mighthave been aimed at a wider audience.
I'm saying if we are doinganything, then I think we
should be quite autism specific.
Take care, Lucy.
Yeah, maybe listening to the 5,5, 5, Lucy, just to, to chill.
Yeah.
I wondered if the people being ondifferent colors, like, and that
(19:59):
are in kind of like a spectrum of,you know, the red or in yellow, like
they, I wondered if that was likemeant to make, you know, the autism.
So there's this thing about routineapparently with, uh, autism.
And that's been an issue for me asa child that I barely washed on.
(20:21):
I ruined my teeth base atthe by never brushing them.
And even as an adult now who'slost a lot his teeth, um.
And should really be looking afterwhat he has left as a priority.
I still struggle to do it just if it's toolate and I'm too tired, I can't be asked.
(20:42):
And what you said about daydreaming,there's this thing of, um, yeah,
sometimes there's better things todo with yourself in your head, you
know, and it's like the basics can go.
Focus for you is on parent and, andthis is where it diverges from my needs.
(21:06):
So, but it would be a good
subject to per.
The other part of it is that it, it'slike parenting was the initial driver
for me learning all this stuff, youknow, or, you know, grounding some
of the this stuff and the, the other.
(21:26):
Then something else kicked in about like.
I don't wanna just, I don't think it wouldbe very good if, uh, I raised the kids
and then just break down and then they'rejust like, oh, no, mom did all that.
And then kapu.
And so I thought I better try and keepmyself in good condition as I get older.
And I started to think I wouldquite like to be able to get,
(21:47):
you know, some degree of like.
Use some of the energy I've got oncethe kids are like independent to work.
Like I really want to like, havemy own income and I don't want
it to be like a horrible likejob like I've had in the past.
Um, no offense to, but theydon't know to like anyway.
But I just, and I just needto be able keep that stuff.
(22:09):
So it's kind of out of, its.
I've got a couple of reasonsand I think that that's helped.
The other thing I'd say with thetoothpaste is, um, we found blue raspberry
toothpaste, which completely transformedmy son's life and I quite like the spicy
cinnamon euthymol one, but mint, na, same.
Wouldn't, wouldn't be
(22:30):
doing that.
It's doing it.
That's a problem.
I don't mind toothpaste sometimesI think I'm afraid of water to a
certain extent or I dislike it.
But what you were saying there.
What were you saying there?
'cause I've forgotten alreadyand I had something to say.
I was just going on a, before thattangent about, um, like reasons
(22:51):
to, reasons for doing that.
And it was like maintaining myselfbeyond just motherhood, you know?
Ah,
what was going to say was, I've noticedwith, with autism is this, there seems
to be this need in people to fit in.
I'm not saying that's right or wrong.
It's almost a pressure when Ireflect upon it and why I can't
(23:11):
be bothered trying to fit in.
But there are times when you have towork with it, and that would be, I
suppose, when your clown could come inand you can sort of use the mask in a
creative way to say, well, I'm gonnaplay now, I'm gonna play this game.
And nobody like too pressure by it.
(23:32):
I can, I hear things likepeople sitting passing degrees.
I couldn't do that.
It's like, that's where it all brokedown for me at school, you know?
'cause it was drawn in otherdirections and things like that.
But just that attention and drivejust, I don't know how people do it.
I think we're in.
(23:57):
And some of the autistic people starttalking about mono tropism whereby
they, they kind of say that we can onlyconcentrate on one thing at a time.
And so we miss out a lot of thepracticalities of life because a lot
of the practicalities of life are doingmultiple things all at the same time.
(24:18):
And then when it comes to executivefunction, then the medics sort of
say that autistic people lack anability to time manage and to put
things in order and to do them asa necessary list to tick off lists.
We about, and I know an awful lotof autistic people that take that,
(24:38):
and then entirely its head and.
It's, it's definitely a thing thatpassing on life skills from generation to
generation or peer to peer is somethingthat we miss out as on as autistic people.
(24:59):
And I think a way of passing stuffdown so that people recognize something
and then another person says, well, Iget around it by this method now that
is a really nice bit of self help.
I could see that becoming a kind of themeor a magazine program or a, a time where
(25:21):
some people just get together and startchatting about something with a, maybe
the reading something off a Quora ora, or a somebody Substack or something
and just going off and, and having achat about how they get around these
things, I think be a very valuable.
I've got lists of
(25:44):
these things and I study this stuff allthe time, and yet if you ask me right now,
I couldn't tell you anything about it.
I couldn't concentrate and they said Ididn't have a DHD, so I'm just wondering
why I can't focus like that is as you'respeaking, I'm going, oh, tell this, tell
(26:04):
jus that, and I can't recall any of it.
Yet, that's all I've been doing allweek, is looking at hacks on in lifestyle
due to this fitting in thing like this.
How can I get away with itwithout fitting in basically?
(26:26):
I'm thinking like back to Jill.
I'm saying I've got something to say withRaymond's as well, I think, but like,
like a do it yourself, like your own way.
Because there's no one way todo any of this stuff at all.
And I think what I got so much fromlike peer spaces where I could hear
different ways other people do.
It was just like.
(26:48):
That acceptance for thediversity of the how.
Even though we can go, all right, okay.
This is a gap.
I'm really not managing very wellwhen it comes to, say, it's like
making phone calls or speakingto official people, whatever.
Whatever it is.
And then I. Hearing, oh,well this is how I do it.
You don't, I don't necessarily ever adopta hundred percent what somebody else does,
(27:09):
but it's like I can modify my own stuffand it's helped me to break rules that
were probably programmed into my head,like growing up about how things should
be, because it just, like, if I try and dostuff like that, it just doesn't work for
me in my life as it is in the year 2025.
You know.
And other people who have maybe been ableto adopt something earlier than me, like
(27:32):
it's easier for me to kind of have a lookat and look at a few times and then see,
um, what I want to actually start to do.
It's getting started as the, the hardbit and not overwhelming yourself.
Myself,
(27:56):
I think.
These centralized groups likenumber six in Edinburgh, what
what they do is they set up theselittle branches or departments that
handle issues like that for people.
In a sense, they're representatives,but they're also enabling people to
do it for themselves if they can.
(28:18):
So they have a kinda like welfareadvisor and they have other people
and they maybe do the communicatingfor you, but I think the.
Helping you get there yourself.
So that kinda advice is out there forneurodivergent or autistic people.
But I think these, these skills you'rementioned and apply on so many levels
(28:39):
for so many different types of people,
I really feel as though I doubt thatthe organization autism initiative.
Fully
useful.
I, I find myself feeling very skepticalabout the services that they put out
(28:59):
there, whether they exist or not.
Yeah.
For me, it wasn't through anyautism services that I like.
Started to get the peer, the peer supportspaces that I'm part of now kinda had
to make them, and I feel like it's likestill at such an early age, but it's.
(29:22):
I feel like it's similar to, it'skind of like what we're doing
here with these conversations.
Were the spaces you madevirtual and online, or.
Um, I have an in-personpeer support space.
It started out as a support groupthat kind of took over as a peer
support group, went autonomousand then started to kind of grow.
(29:46):
So now we kinda have, instead of onemeeting a week, we have, uh, three and we
do like, um, we kind, we've been kind of.
Amassing learn and free learnings thatwe've been able to take advantage of, like
say through like the Scottish government,how to run a co-op, things like that.
Um, or, and then an other day we're, we'resharing the, there's the Scottish Recovery
(30:11):
Network's got like a package of peersupport training that you can deliver.
So we've been doing thatwithin ourselves 'cause.
Yeah.
And then we, we plan to kind of keepgoing with that so that we can kind
of seed more of this, because we justfind that actually everybody's got,
um, everybody, we, we calculate like,how many years have you like, you know,
struggled and I think we calculatedlike 150 between a small group of us.
(30:36):
And then if you kinda calculateall the life experience.
So that's like so much in theroom that you can kind of.
Uh, start to share.
And then you start to have likea bit of a, a local map and also
like a bit of a virtual map.
'cause you can share like, oh,there's this virtual, like, online
resource that's quite helpful.
(30:56):
Um, so yeah, the ScottishRecovery Network's a, a good, um,
place to have a look for that.
And yeah, there's like a, there's.
Peer support chain and availableonline through the University
of the Highlands and Islands.
It's um, like guided by somebodywith their own lived experience too.
So that's what I would recommend.
There's your magazine right there, Jules.
(31:18):
She's got it going.
It's like.
I've noticed this in community activismand it kinda reflects on what Joel said
earlier about the centralized groups.
When you get these establishedstandard groups, you know, if the
experience is even slightly negative,you kinda wanna look for your, a way
to do it yourself and get into somekinda matic, kinda offshoot, you know
(31:40):
what, sometimes working within that.
And I think ultimately the, the ultimatehack is to work within the system.
Yeah, because I want the mainstreamto be an amazing place, like a big,
broad stream where we're like doinggood stuff and that's what it, that's
what like community's about like havinglibraries and like public swimming pools
(32:00):
and like good shared goods, educationallike resources and like fun arty stuff.
I think that's where the clown comes in.
You see it all as absurd.
Any kinda oppositional thing and anykinda standard, you know, and you
go, let's be flexible, let's be open.
(32:22):
And the way to get there, I think,within it is, is to just have a
laugh at how absurd that is sometimes
for me, the, the most good that canbe done is definitely in the, in
the way that Nicholas described.
(32:42):
Attitude.
We'll do it ourselves.
We'll start it, we'll do it cheap.
We'll, you'll, uh, we'll design itourselves for ourselves and when
we'll bring in whatever resourceswe can that have been already put
out there and make use of them.
And we'll, you know, almost likeputting a cover together, that you
are cutting bits outta this andbits outta that and sticking it
together and making it some kind ofFrankenstein that worked and that to.
(33:05):
At
the moment, there's an absolutecrash happening in the way
autism services are delivered.
It's absolutely not possible forpeople to get the funding for
the services that they're alreadyentitled to under the previous system.
(33:28):
It's just not gonna happen.
So there's all kinds of.
The way for me is to bypass all ofthat shit and to do it as grassroots,
as radical, as revolutionary.
And we're not alone in thissort of like situation.
(33:49):
PTSD, like
services for people recoveringfrom trauma are, are not, you
know, giving people the healing.
They're not accessible, just to say way aswe complain about autism services as well.
And it again, there it islike peer support and um.
(34:13):
Like recovery in thatsense is, is so important.
And then there's so much crossover there.
I'm, I, I, I do stuff in a mixedspace where I sometimes feel like
the fact that I'm, um, autistic andI'm willing to, like, I've been also
willing to put myself like out thereand be almost a bit of a, a pioneer.
Like, 'cause I'll go into like a new spacethat I want to make a connection with and
(34:36):
be awkward and like just deal with it sothat then I can bring the others on board.
After.
It's something that I can do.
Uh, and I feel like
typically autistic being apart of it, I have to say.
Yeah.
Nicola.
But I think, yeah, the people
who, the people who say, let's look overthe other side of the range of mountains
(35:00):
to see whether there's better grazing.
They're the autistic people.
That's you.
Yeah, I've get crash meetings of likepeople who deliver services, like,
so the probably directors and stuffand like I kind of bombed in, like
I'd fallen over the hedge and made anentrance, but it's actually how I ended
up having, making the contact with them.
I didn't literally do anyof that, but like it's how I
(35:21):
ended up making the contact.
It's helped me to.
Get onboard with deliveringthe training to my peers that
I'm getting to do just now.
Um, and it was like, I didn't likemake a, I didn't, I just went along,
was quiet, and then when I got to thequestions I was like, I kind of think I'm
lost, but this is what I'm looking for.
And people were fine that I was there.
It was like advertisedto the public anyway.
So I feel like for people, forneurotypical people, one of the
(35:45):
things that they could get from meis just that, just be yourself or
just, you know, who cares if youget it wrong like I do, I'll just.
If I feel like people I, if they likelook at me and go, she can do it.
I can do it.
Just taking pleasure listening to you.
So were these like public meetings?
You were gate crashing?
(36:07):
It was advertised on Eventbrite.
Does that mean it was an onlineevent or a physical event?
Oh, online.
Like I could, I wouldn'tmanage to show up in person.
I have that issue aswell, but even online, I,
I'm sometimes a very good boy.
You know, I play by the rules.
(36:29):
They assert rules so much.
No, like I think it was just they were,it wasn't like I wasn't meant to be there,
but it was just like there was been thingsmuch more well suited to somebody who
was like a volunteer peer support personrather than like a service deliverer.
But I found it quite interestinganyway, and I think that my curiosity,
(36:50):
like it helped me be there and likeyou'd be respectful of the space too.
But again, in real, in the reallife spaces, like I, I feel like
I can be a wee bit conspicuous.
Like, and I think that's where theycan people get the more, well, if
she can do that, I can do that thing.
(37:13):
I think there's another thing, Ray,that if you take myself and Nicola
and yourself that having this at themoment, the newbie of the in self.
So a lot
of what you're saying is, is just,is just no longer will be true in
a few months or whatever time you.
(37:37):
It's this stage thing that you talk about.
You know, the, the process of dealingwith this realization that you are
neurodivergent that is separatefrom the rest of the population.
It's a percentage that has a, a big groupin it, and, and that's a lot to handle
as an adult identified autistic man.
(37:58):
I don't actually find theautism hard to deal with.
I'm still dealing with what drew me tothe diagnosis, which was social phobia
and social anxiety and panic attacks.
I've still got all that shitto deal with all my life.
I worked it out my wayand I'm still doing that.
So this is just a different filter now,but essentially the core problem that
(38:21):
got me to this filter still exists.
Yeah, I take that on board.
But what I've put forward to you thatwhat you describe the phobia, the
social phobia, the panic and all that,uh, that is intrinsically part of the
autistic experience, it's being autistic,has increased that for you socially.
(38:44):
And it, it's so embeddedas part of the whole thing.
So.
The exploration into your autismis also the explanation into why
you ended up looking for some kindof solution in the first place.
I can we agree on that?
Oh yeah.
And it reflects what Nicholassaid earlier about PTSD.
(39:06):
I see it as PTSD.
Basically, society justgot too much to handle
that.
That is a reasonable way of expressing it.
A lot of people.
They will see that.
They'll recognize that in their selvesthat this is a trauma response in lots
of ways, and it always is going to befor people who have lived not knowing
(39:28):
about autism or anything about it.
Living as a neuro divergent personwithin neurotypical societies,
it's gonna leave a mark on you.
I'd like to assertsomething positive as well.
It opens up the door to pursue andexplore alternatives, and that's
what my life's always been about.
Now it's prioritized and I thinkthat reflects something Nicola was
(39:50):
saying earlier, and you, you, youyourself, when you focus on the do
it yourself techniques is we find ourown ways and these ways should exist.
Hallelujah to that brother.
Well, it's 5.
44 now, so our drop in hour is finished,and thank you to all the people who
have texted, and also to the peoplewho have put their voices to this,
(40:13):
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,
but the people here have given permission,so that it's an example for others.
See you again.
Always.
Reliably.
(40:33):
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.
(00:24):
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.
(00:45):
. Hello?
Hi there.
From
last week, one of the thingsthat stayed with me was like.
I meant to it at the time, butI, I remember when my son got
diagnosed with autism and I waslike, I remember to somebody at the.
I was like a we signposting agency thatI'd called and I was like, I just feel
(01:08):
like I'm recognizing this in myselfand it's, these traits haven't like,
you know, they've not done me so well.
I feel like there's been gaps inwhat I've needed to have learned and
how will I lead them through that.
I wish there was a wee book that justtold you what you needed to sort of train
yourself and your kids to be able to do.
And she was like, well, funnily enough,we've made a wee booklet about that.
(01:30):
And I wonder like, this was likea, a resource specific to like that
organization, but it was so helpful.
Um, I'm about to get ambushed by children.
Hang on.
Okay.
It's safe, eh, but this book hadhad a look for it and it was really
cool 'cause it had like basic,uh, necessities that you need to
(01:53):
learn and then it had intermediate.
And then advanced and I was able to lookthrough it and specifically see some of
the areas that I'd only managed to getto like intermediate level at that had
left me feeling a little bit, like maybeleft me a bit vulnerable in the world.
So I think there are such resourcesexist and I, I kind of feel like
(02:15):
I know speaking for myself and.
I just sometimes feel like ifI can learn a strategy to do
something, I can manage quite a lot.
Like it just doesn't come intuitively.
Sometimes it doesn't come intuitively.
Others, it really does.
Yeah.
I'm wondering how the levelswe're gauged and of course,
(02:37):
um, strategies are, are good.
They're useful.
Yeah, I was at this PO point I was at, Iwas more at that rather than analyze it,
I was just like, cool, great resource.
Let me give it a go.
So I haven't really kind of like jelledinto the why, but I, I reckon from, from
when I was, sorry my dog when I was.
(03:00):
I studied like nursing.
Um, and one of the measures that theyused there was activities of daily living.
And I think that there's somefairly standardized, like, like sets
of skills that have been mapped.
'cause these kind of reminded me of that.
I'm gonna leave it just now, but
(03:22):
yeah, deal with the.
It's, it's just, I had a kindaknee jerk reaction there.
Here its kinda levels of,it felt like behavior.
And of course I'm very curious asto how this might apply to an adult.
'cause I'm assuming the book mightbe, maybe I should wait until Nico
(03:47):
comes back and says that she's got.
Time for attention.
She may be busy.
I think I might have missed abit about what Nicola was saying.
My sound went in and out
levels in a booklet.
Something to get a resource,something to get that you wish
you'd had when you were younger.
(04:09):
I. I dunno.
It feels like that's one of thetools out there and, but it's kind
of a limited, um, format really.
I would've been so keento find something better.
'cause it's the best thingthat I've found so far.
'cause it's helped me to be able to go.
Alright, so like say basic levelskills around like personal
(04:29):
appearance and hygiene, right?
You've got.
Can wash hands appropriately,wash his face, naked ears,
bath the showers appropriately.
Like I need.to get to that point actually.
And, uh, it talks aboutintermediate skills.
It can be like, puts dirty clothesseparately, selects appropriate
clean clothes for non-work time, you
(04:51):
know?
Um.
That was like, you know, that wasn'tstuff that came easily to me in
terms of functioning in the world,and I wanna be able to function
independently, and I ended up havingchildren, which meant that if I didn't,
then actually my, my parenting canbe seriously called into question.
Like, I need the nuts and boltsof like, what do I need to do?
What's enough because it's, it wouldfind when I was like in a goodle,
(05:15):
just myself, but when there's otherpeople, like I, there's a standard
that I had to meet and that this to me,
like kept, has kept me being able to likeparent alone and I wouldn't have had it.
I don't have any better tools than this.
And then it's like when I, it talksabout advanced skills, if selects
appropriate clothes for warm cold weather.
(05:36):
I got caught out withthat so much until like.
Like I was probably late thirties, likewashing can set clothes for machine wash,
like dry cleaning can choose a hairstyle.
I mean, so, you know, there's some ofthese things that are not, these are,
it's like, help, help me see, like,why am I not, why am I not functioning
(06:01):
with all these other people whenI don't feel like I'm lacking in.
Perception, and
so it's a bit like a.
Almost a, almost like a training programor a, or a checklist to make sure, are
these things that we've picked up fromsomewhere are these schools that have
(06:24):
either been passed on to us by a parentor carers or, and I suppose there we
go to the whole thing that an awfullot of autistic people don't have an
adult that is passing on these skills.
A lot of people in care, a lot of peoplein institutionalized environments.
Yeah.
I, I'm starting to getwhere you're coming from.
Oh, I dunno if you know it, Lucy,but your microphone's open so
(06:47):
we are being able to hear you.
What you know, tting, whatever.
Yeah, it did so much.
Give me the toolkit, but it gave me thekind of like, almost like the a, a tool,
which was the ability to break stuff down.
Like for me, I need to break my tasksdown quite a lot to be able to do them.
(07:11):
Like, and find ways tosort of stack them as well.
So this, these are kind of thebooklets all call it developing
skills for independent like living.
And I don't know, I feel like when I foundsomething that I wasn't managing to do, it
gave, it made it a lot easier for me to goand then find a resource, whether that's
like being an online resource like a.
(07:34):
I don't know, pla like, there's quitea few like things that I found online,
but then I've been able to find, findthe stuff in my community and you know,
I think people have sometimes asked melike how I've met some of my other neuro
divergent friends and I suppose it's likeit's been through like seeking out that
(07:55):
support and like being around other peoplewho have been receiving that support and.
Adult learning at the ourschools has been quite helpful
as well around here for that.
And I guess it's like there's a, it's,I think one of the things that, uh,
could be hard to deal with is like, it'swith the spiky profile stuff because.
(08:20):
Like, I've got a first class, like honorsdegree, but I still needed like ma like
masses of help with some, um, otherskills that really like sideline my life.
And yeah, I had to sort of probablyswallow like pride almost, um,
to start to accept that help.
(08:43):
But it's.
It's been worth it because like my life isa bit like, it's much less of just chaos.
Did you find life skillseasy to adopt and learn?
No.
Takes years taking meyears like and still.
(09:04):
It's only like I kind of look back andI'm like, oh, I'm doing a lot better now.
But it's kind of, it stilldoesn't feel like it until I
kind of reflect on looking back.
Um, but I'm getting there slowly andit, it, um, I feel a bit more hopeful.
I used to feel really, reallydefeated by these struggles.
(09:25):
Do you feel you resist itor it's not natural for you?
I mean, I, I totally respectwhy you need it, you know?
Yeah.
Like I would, I think that my default is.
Like to, to day, like really, reallydeeply daydream a lot and not manage
my stuff, avoid things, be in deniala lot about what's actually happening.
(09:52):
And so it's, it's taken like I've got,yeah, it's taken a lot because it's not
my fault, but, um, it's, I have, in a wayit's like, it's a choice that I've made.
To do this in a way, because Icould just give up and be like, oh,
I just can't handle being a mom.
Do you know?
Which would've been an option,but I couldn't, I didn't choose
(10:17):
to do that, and so I feel like
I've had to, I've had to kindof find ways to function.
I, I think at the back of this, whatwe're talking about is success, Nicola.
Parenting is enormous.
Parenting two people is enormous,and parenting two people as a single
(10:40):
parent is another of enormous.
On top of that.
And then if we add the neurodivergence in,I recognize an awful lot of what you say
about feeling that there's block on doing.
But this is, this issuch a story of success.
Where you are now is areal story of success.
(11:03):
It's not gonna be easy because you'restill a fucking parent and it's not
gonna get easy until they show anawful lot more, uh, independence
than they are at the moment.
I was speaking with my owndaughter who in her today.
Oh, I'm so relieved.
You said that does get easier becauseI'm really worried that you're
(11:23):
gonna say it never gets any better.
And I was just like, oh, crap.
No, it's lovely.
You know, and, and, but it, it, it goesthrough really intense phases of you
think you, you just, not you, you feelfor periods of time as though you're
fucking it up, you know, tiredness, a.
(11:46):
The amount of stuff happening allat once and tiny little things
can sort of knock you off course.
I think it's a challenge if you'reneurodivergent being a parent,
particularly if you're a single parent.
Does it get better?
Yes.
Yeah.
Every bit of groundwork in every bitof things that you're doing now that
(12:07):
are helping your kids to communicatewith you, primarily because you
are.
Communications portal to the rest ofthe world, very much at the moment.
So the more you've got that youare communicating where you and
you and they understand each other,that is a real big foundation of
groundwork for everything that comes.
(12:28):
It just makes everything after easier.
And you know, the impression I get isthat you are, you're slamming that.
Yeah, it's good fun.
I think that the, one of the mostchallenging bit is being their interface
to the outer world as well, and that'swhere some of this like developing skill
stuff's probably come from because it'slike I have to be able to like work
(12:50):
the other people and not work them, butyou know, I need to be able to engage
with like go and doctors and sportscoaches and all sorts of things that.
I can, I could and like willat some point be able to just
absolutely choose like not to.
I see.
I, I seem a herbalistrather than a doctor.
(13:13):
Like I choose things that work for me,but with parent and there's been just
like, especially single parent andthere's been a lot more of a kind of, um,
engagement with life than.
I would've chosen, but I think I'mquite grateful for it because there's
been some really, it's, yeah, there'sbeen some really up upsides to that.
(13:36):
You definitely get forced into situationsyou wouldn't necessarily choose, and
then you end up benefiting from them inways that you couldn't have imagined.
You know, you get pushed into things.
You, you, you get pushed into thedeep end on so many things being a
parent, and some of those will workout and some of those will just be
flat on your face or a belly flop you.
One thing that's helped is I do feellike I carry a little bit of clown energy
(13:58):
with me and not always have, and like,so like I have made, I I, the four paths
that have happened, like I, I kind offeel a wee bit immune to like that.
Like I can laugh at myself and I cancope with being laughed at Laugh.
Yeah.
Laughed at.
Yeah, the clown thing helps.
(14:19):
That's been a lot with me this week.
I wonder if that resonates with otherpeople sometimes feeling you have
little archetypes that help you.
Well, definitely.
I mean, we've covered that slightly inthe conversations that we had when I
was, uh, abroad, that use of clowning,that use of the purposeful outside mask.
(14:43):
But also it, it being an actual part ofyou, a release the clown is it starts
potentially as a mass, but is also partof your personality in the end of it.
My, my wife uses it always has asa little girl and all the way up.
My daughter definitely has, and yeah.
(15:04):
What would you want to do with this?
Would you want to make this akind of slot on autistic radio
with like a structure orjust keeping it open as is?
Yeah.
A structure.
I was thinking, you know, make it a, inthe same way that you had a leaflet, maybe
even, well start by just going throughthe leaflet and do it as an audio thing.
(15:26):
I was just looking at theleaflet and thinking, oh,
this one's quite interesting.
'cause it had advanced and exceptionallevels of like interpersonal skills
and advanced is like, has someability to resolve conflicts with
others and exceptional, exceptional,able to deal with bullying.
Like that's, that's likea, a advanced skill.
But they're these, I dunno, it'slike they're all learnable as well.
(15:53):
Um.
Obviously that's like a lot of work, butit's almost like working on your avatar.
Yeah.
Working on your avatar, working on your,
your shell, your, your, your outsidefacing persona, the superpower,
(16:14):
the superhero that you put upas a, as a proxy for yourself.
I was meaning the kind of likethe part, you know, how there's
like, I want to change myself.
Like it's a strange, there's objectand subject and stuff there, but just
in terms of like, I kind of jokingabout that avatar, but it's the same.
(16:37):
It's like you're learning skills.
I just feel, I, I just, I dunno.
I feel like our brains arereally plastic and have like.
Capacity, but like I can't work 'em verymuch at a time, but over like huge, big,
long periods of time, it'd be like years.
You can, these things can shift.
(16:59):
And I'm not saying we're doing it for,you know, the system, but you were
doing it, like doing it because like,it's interesting, like to learn about.
I felt bullied, like when I rememberjust feeling like completely like
useless and hopeless about bullying,like as a younger person and now like
it's, you know, you, you start to learn.
(17:19):
It's got a bit of a pattern to itand then you realize like people have
been trying to spell out thesepatterns in different ways.
Brady's, I don't know abouta slot, and I'm not trying
to evangelize by saying this.
I'm just saying like, you know, this is
something that came up for me wasjust, I was thinking about how.
Booklet helped me out quite a lotand it was like developing skills for
(17:41):
independent living, a flexible guide,and I just thought that was kind of cool.
Like I could, if I'm quite happy justto get to like a, you know, basic
level and something, and that's great.
If I want to get onto like intermediate,like I could, I'm like right.
Okay.
Trying find one here.
It's like an intermediate one.
(18:02):
I get where you're coming from,
so accept
appropriate
footwear
for different occasions.
I've got one pair of shoes.
It could be a self-helpconversational expansion from us
to like personal experience thatworks for us that other people.
(18:28):
People who've got older and founda way around things just pass on
the information down the line.
Life hacks.
Cheat codes.
Cheat codes, life hacks.
Yeah, they, yeah, they'rethe, yeah, they're the kind
of metaphors, aren't they?
So this is not particularlyfor neurodivergent people.
(18:50):
If it's got.
I'm trying to get an idea of what the, whothe book is aimed at, particularly anyone.
It's got a flexible guide for, andthen a colon and a blank space.
And above it there's like,there's like a spectrum of red
(19:12):
and orange, yellow, greene, andmagenta with people on each different.
On this spectrum, and it was developed by
West Loath Council.
Uh, and there's some otherlittle icons that my eyes are
too old to see without EFOM,
(19:35):
maybe.
Oh, I see what you're saying.
The, the booklet originally mighthave been aimed at a wider audience.
I'm saying if we are doinganything, then I think we
should be quite autism specific.
Take care, Lucy.
Yeah, maybe listening to the 5,5, 5, Lucy, just to, to chill.
Yeah.
I wondered if the people being ondifferent colors, like, and that
(19:59):
are in kind of like a spectrum of,you know, the red or in yellow, like
they, I wondered if that was likemeant to make, you know, the autism.
So there's this thing about routineapparently with, uh, autism.
And that's been an issue for me asa child that I barely washed on.
(20:21):
I ruined my teeth base atthe by never brushing them.
And even as an adult now who'slost a lot his teeth, um.
And should really be looking afterwhat he has left as a priority.
I still struggle to do it just if it's toolate and I'm too tired, I can't be asked.
(20:42):
And what you said about daydreaming,there's this thing of, um, yeah,
sometimes there's better things todo with yourself in your head, you
know, and it's like the basics can go.
Focus for you is on parent and, andthis is where it diverges from my needs.
(21:06):
So, but it would be a good
subject to per.
The other part of it is that it, it'slike parenting was the initial driver
for me learning all this stuff, youknow, or, you know, grounding some
of the this stuff and the, the other.
(21:26):
Then something else kicked in about like.
I don't wanna just, I don't think it wouldbe very good if, uh, I raised the kids
and then just break down and then they'rejust like, oh, no, mom did all that.
And then kapu.
And so I thought I better try and keepmyself in good condition as I get older.
And I started to think I wouldquite like to be able to get,
(21:47):
you know, some degree of like.
Use some of the energy I've got oncethe kids are like independent to work.
Like I really want to like, havemy own income and I don't want
it to be like a horrible likejob like I've had in the past.
Um, no offense to, but theydon't know to like anyway.
But I just, and I just needto be able keep that stuff.
(22:09):
So it's kind of out of, its.
I've got a couple of reasonsand I think that that's helped.
The other thing I'd say with thetoothpaste is, um, we found blue raspberry
toothpaste, which completely transformedmy son's life and I quite like the spicy
cinnamon euthymol one, but mint, na, same.
Wouldn't, wouldn't be
(22:30):
doing that.
It's doing it.
That's a problem.
I don't mind toothpaste sometimesI think I'm afraid of water to a
certain extent or I dislike it.
But what you were saying there.
What were you saying there?
'cause I've forgotten alreadyand I had something to say.
I was just going on a, before thattangent about, um, like reasons
(22:51):
to, reasons for doing that.
And it was like maintaining myselfbeyond just motherhood, you know?
Ah,
what was going to say was, I've noticedwith, with autism is this, there seems
to be this need in people to fit in.
I'm not saying that's right or wrong.
It's almost a pressure when Ireflect upon it and why I can't
(23:11):
be bothered trying to fit in.
But there are times when you have towork with it, and that would be, I
suppose, when your clown could come inand you can sort of use the mask in a
creative way to say, well, I'm gonnaplay now, I'm gonna play this game.
And nobody like too pressure by it.
(23:32):
I can, I hear things likepeople sitting passing degrees.
I couldn't do that.
It's like, that's where it all brokedown for me at school, you know?
'cause it was drawn in otherdirections and things like that.
But just that attention and drivejust, I don't know how people do it.
I think we're in.
(23:57):
And some of the autistic people starttalking about mono tropism whereby
they, they kind of say that we can onlyconcentrate on one thing at a time.
And so we miss out a lot of thepracticalities of life because a lot
of the practicalities of life are doingmultiple things all at the same time.
(24:18):
And then when it comes to executivefunction, then the medics sort of
say that autistic people lack anability to time manage and to put
things in order and to do them asa necessary list to tick off lists.
We about, and I know an awful lotof autistic people that take that,
(24:38):
and then entirely its head and.
It's, it's definitely a thing thatpassing on life skills from generation to
generation or peer to peer is somethingthat we miss out as on as autistic people.
(24:59):
And I think a way of passing stuffdown so that people recognize something
and then another person says, well, Iget around it by this method now that
is a really nice bit of self help.
I could see that becoming a kind of themeor a magazine program or a, a time where
(25:21):
some people just get together and startchatting about something with a, maybe
the reading something off a Quora ora, or a somebody Substack or something
and just going off and, and having achat about how they get around these
things, I think be a very valuable.
I've got lists of
(25:44):
these things and I study this stuff allthe time, and yet if you ask me right now,
I couldn't tell you anything about it.
I couldn't concentrate and they said Ididn't have a DHD, so I'm just wondering
why I can't focus like that is as you'respeaking, I'm going, oh, tell this, tell
(26:04):
jus that, and I can't recall any of it.
Yet, that's all I've been doing allweek, is looking at hacks on in lifestyle
due to this fitting in thing like this.
How can I get away with itwithout fitting in basically?
(26:26):
I'm thinking like back to Jill.
I'm saying I've got something to say withRaymond's as well, I think, but like,
like a do it yourself, like your own way.
Because there's no one way todo any of this stuff at all.
And I think what I got so much fromlike peer spaces where I could hear
different ways other people do.
It was just like.
(26:48):
That acceptance for thediversity of the how.
Even though we can go, all right, okay.
This is a gap.
I'm really not managing very wellwhen it comes to, say, it's like
making phone calls or speakingto official people, whatever.
Whatever it is.
And then I. Hearing, oh,well this is how I do it.
You don't, I don't necessarily ever adopta hundred percent what somebody else does,
(27:09):
but it's like I can modify my own stuffand it's helped me to break rules that
were probably programmed into my head,like growing up about how things should
be, because it just, like, if I try and dostuff like that, it just doesn't work for
me in my life as it is in the year 2025.
You know.
And other people who have maybe been ableto adopt something earlier than me, like
(27:32):
it's easier for me to kind of have a lookat and look at a few times and then see,
um, what I want to actually start to do.
It's getting started as the, the hardbit and not overwhelming yourself.
Myself,
(27:56):
I think.
These centralized groups likenumber six in Edinburgh, what
what they do is they set up theselittle branches or departments that
handle issues like that for people.
In a sense, they're representatives,but they're also enabling people to
do it for themselves if they can.
(28:18):
So they have a kinda like welfareadvisor and they have other people
and they maybe do the communicatingfor you, but I think the.
Helping you get there yourself.
So that kinda advice is out there forneurodivergent or autistic people.
But I think these, these skills you'rementioned and apply on so many levels
(28:39):
for so many different types of people,
I really feel as though I doubt thatthe organization autism initiative.
Fully
useful.
I, I find myself feeling very skepticalabout the services that they put out
(28:59):
there, whether they exist or not.
Yeah.
For me, it wasn't through anyautism services that I like.
Started to get the peer, the peer supportspaces that I'm part of now kinda had
to make them, and I feel like it's likestill at such an early age, but it's.
(29:22):
I feel like it's similar to, it'skind of like what we're doing
here with these conversations.
Were the spaces you madevirtual and online, or.
Um, I have an in-personpeer support space.
It started out as a support groupthat kind of took over as a peer
support group, went autonomousand then started to kind of grow.
(29:46):
So now we kinda have, instead of onemeeting a week, we have, uh, three and we
do like, um, we kind, we've been kind of.
Amassing learn and free learnings thatwe've been able to take advantage of, like
say through like the Scottish government,how to run a co-op, things like that.
Um, or, and then an other day we're, we'resharing the, there's the Scottish Recovery
(30:11):
Network's got like a package of peersupport training that you can deliver.
So we've been doing thatwithin ourselves 'cause.
Yeah.
And then we, we plan to kind of keepgoing with that so that we can kind
of seed more of this, because we justfind that actually everybody's got,
um, everybody, we, we calculate like,how many years have you like, you know,
struggled and I think we calculatedlike 150 between a small group of us.
(30:36):
And then if you kinda calculateall the life experience.
So that's like so much in theroom that you can kind of.
Uh, start to share.
And then you start to have likea bit of a, a local map and also
like a bit of a virtual map.
'cause you can share like, oh,there's this virtual, like, online
resource that's quite helpful.
(30:56):
Um, so yeah, the ScottishRecovery Network's a, a good, um,
place to have a look for that.
And yeah, there's like a, there's.
Peer support chain and availableonline through the University
of the Highlands and Islands.
It's um, like guided by somebodywith their own lived experience too.
So that's what I would recommend.
There's your magazine right there, Jules.
(31:18):
She's got it going.
It's like.
I've noticed this in community activismand it kinda reflects on what Joel said
earlier about the centralized groups.
When you get these establishedstandard groups, you know, if the
experience is even slightly negative,you kinda wanna look for your, a way
to do it yourself and get into somekinda matic, kinda offshoot, you know
(31:40):
what, sometimes working within that.
And I think ultimately the, the ultimatehack is to work within the system.
Yeah, because I want the mainstreamto be an amazing place, like a big,
broad stream where we're like doinggood stuff and that's what it, that's
what like community's about like havinglibraries and like public swimming pools
(32:00):
and like good shared goods, educationallike resources and like fun arty stuff.
I think that's where the clown comes in.
You see it all as absurd.
Any kinda oppositional thing and anykinda standard, you know, and you
go, let's be flexible, let's be open.
(32:22):
And the way to get there, I think,within it is, is to just have a
laugh at how absurd that is sometimes
for me, the, the most good that canbe done is definitely in the, in
the way that Nicholas described.
(32:42):
Attitude.
We'll do it ourselves.
We'll start it, we'll do it cheap.
We'll, you'll, uh, we'll design itourselves for ourselves and when
we'll bring in whatever resourceswe can that have been already put
out there and make use of them.
And we'll, you know, almost likeputting a cover together, that you
are cutting bits outta this andbits outta that and sticking it
together and making it some kind ofFrankenstein that worked and that to.
(33:05):
At
the moment, there's an absolutecrash happening in the way
autism services are delivered.
It's absolutely not possible forpeople to get the funding for
the services that they're alreadyentitled to under the previous system.
(33:28):
It's just not gonna happen.
So there's all kinds of.
The way for me is to bypass all ofthat shit and to do it as grassroots,
as radical, as revolutionary.
And we're not alone in thissort of like situation.
(33:49):
PTSD, like
services for people recoveringfrom trauma are, are not, you
know, giving people the healing.
They're not accessible, just to say way aswe complain about autism services as well.
And it again, there it islike peer support and um.
(34:13):
Like recovery in thatsense is, is so important.
And then there's so much crossover there.
I'm, I, I, I do stuff in a mixedspace where I sometimes feel like
the fact that I'm, um, autistic andI'm willing to, like, I've been also
willing to put myself like out thereand be almost a bit of a, a pioneer.
Like, 'cause I'll go into like a new spacethat I want to make a connection with and
(34:36):
be awkward and like just deal with it sothat then I can bring the others on board.
After.
It's something that I can do.
Uh, and I feel like
typically autistic being apart of it, I have to say.
Yeah.
Nicola.
But I think, yeah, the people
who, the people who say, let's look overthe other side of the range of mountains
(35:00):
to see whether there's better grazing.
They're the autistic people.
That's you.
Yeah, I've get crash meetings of likepeople who deliver services, like,
so the probably directors and stuffand like I kind of bombed in, like
I'd fallen over the hedge and made anentrance, but it's actually how I ended
up having, making the contact with them.
I didn't literally do anyof that, but like it's how I
(35:21):
ended up making the contact.
It's helped me to.
Get onboard with deliveringthe training to my peers that
I'm getting to do just now.
Um, and it was like, I didn't likemake a, I didn't, I just went along,
was quiet, and then when I got to thequestions I was like, I kind of think I'm
lost, but this is what I'm looking for.
And people were fine that I was there.
It was like advertisedto the public anyway.
So I feel like for people, forneurotypical people, one of the
(35:45):
things that they could get from meis just that, just be yourself or
just, you know, who cares if youget it wrong like I do, I'll just.
If I feel like people I, if they likelook at me and go, she can do it.
I can do it.
Just taking pleasure listening to you.
So were these like public meetings?
You were gate crashing?
(36:07):
It was advertised on Eventbrite.
Does that mean it was an onlineevent or a physical event?
Oh, online.
Like I could, I wouldn'tmanage to show up in person.
I have that issue aswell, but even online, I,
I'm sometimes a very good boy.
You know, I play by the rules.
(36:29):
They assert rules so much.
No, like I think it was just they were,it wasn't like I wasn't meant to be there,
but it was just like there was been thingsmuch more well suited to somebody who
was like a volunteer peer support personrather than like a service deliverer.
But I found it quite interestinganyway, and I think that my curiosity,
(36:50):
like it helped me be there and likeyou'd be respectful of the space too.
But again, in real, in the reallife spaces, like I, I feel like
I can be a wee bit conspicuous.
Like, and I think that's where theycan people get the more, well, if
she can do that, I can do that thing.
(37:13):
I think there's another thing, Ray,that if you take myself and Nicola
and yourself that having this at themoment, the newbie of the in self.
So a lot
of what you're saying is, is just,is just no longer will be true in
a few months or whatever time you.
(37:37):
It's this stage thing that you talk about.
You know, the, the process of dealingwith this realization that you are
neurodivergent that is separatefrom the rest of the population.
It's a percentage that has a, a big groupin it, and, and that's a lot to handle
as an adult identified autistic man.
(37:58):
I don't actually find theautism hard to deal with.
I'm still dealing with what drew me tothe diagnosis, which was social phobia
and social anxiety and panic attacks.
I've still got all that shitto deal with all my life.
I worked it out my wayand I'm still doing that.
So this is just a different filter now,but essentially the core problem that
(38:21):
got me to this filter still exists.
Yeah, I take that on board.
But what I've put forward to you thatwhat you describe the phobia, the
social phobia, the panic and all that,uh, that is intrinsically part of the
autistic experience, it's being autistic,has increased that for you socially.
(38:44):
And it, it's so embeddedas part of the whole thing.
So.
The exploration into your autismis also the explanation into why
you ended up looking for some kindof solution in the first place.
I can we agree on that?
Oh yeah.
And it reflects what Nicholassaid earlier about PTSD.
(39:06):
I see it as PTSD.
Basically, society justgot too much to handle
that.
That is a reasonable way of expressing it.
A lot of people.
They will see that.
They'll recognize that in their selvesthat this is a trauma response in lots
of ways, and it always is going to befor people who have lived not knowing
(39:28):
about autism or anything about it.
Living as a neuro divergent personwithin neurotypical societies,
it's gonna leave a mark on you.
I'd like to assertsomething positive as well.
It opens up the door to pursue andexplore alternatives, and that's
what my life's always been about.
Now it's prioritized and I thinkthat reflects something Nicola was
(39:50):
saying earlier, and you, you, youyourself, when you focus on the do
it yourself techniques is we find ourown ways and these ways should exist.
Hallelujah to that brother.
Well, it's 5.
44 now, so our drop in hour is finished,and thank you to all the people who
have texted, and also to the peoplewho have put their voices to this,
(40:13):
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,
but the people here have given permission,so that it's an example for others.
See you again.
Always.
Reliably.
(40:33):
Sunday.
444pm.
Cheers guys.
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