April 14, 2025 • 48 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.
(00:46):
Interesting day.
It's my dad's birthday today
and I was just down,jusT down at his house.
You know this there to be celebrationthing, and it's a weird one about
being artistic in artistic way isI felt bad that I was leaving there
to come up here to do this and.
Took time
(01:10):
off tonight to do this and the 555, I would feel bad for you, but
I feel bad for not doing this.
It just seems like no matter what decisionI made today, I would feel sort of guilty
for some reason, but I just, I just wish I
wasn't late.
I just realized frustratedbecause it was a good day.
I think it's because,
(01:37):
sorry.
The radio to do
tonight.
So, yeah, it's just weird too.
I'm
used, I feel human.
It means I'm a good person,that I feel bad for the sake of
feeling bad sometimes, but it's
annoying.
Yeah, I can hear everybody now.
If anybody can hear me, I can hear you.
(01:58):
Oh, lovely voices.
Hi there.
Good evening.
How are
things with me?
Hmm.
That's gonna be a reallylong conversation.
Maybe.
Maybe I'll save that for a little bitwhilst we will say hello to everyone.
Well, I was basically been saying
hello long forum, so Yeah, not problem.
(02:21):
Yeah.
You sound well fedHarry, and well, what's.
Up,
hydrated, lubricated.
That's the one I'm caffeinated.
(02:42):
Asper,
want my third cup of coffee today?
Uh, and I just had about my dad'sbirthday cake, which was nice.
It was just like, oh, you can't stay for
dinner.
Do you want a bit of cake then?
Okay.
So kinda happy.
(03:03):
I think the sun shining helps as well.
And my football team winningsix null yesterday helped.
You know, so it's the simple things.
I feel as though we might beready here for a, a regular Sunday
football report from the Saturdayresults here, Harry six nil.
(03:25):
Wow.
Yeah, was surprised, uh, I wasn't inthe game myself because in a big game I
just go to the home games and I was justwatching the, the goals come through.
The thing that's strange withoutgetting any big detail about it is them
bath in the team, that support beenstruggling all season, hardly got a win.
But as soon, and there's been a difficultseason in terms of financial problems
(03:49):
and get points, deduct meaning it washard to stay in the league anyway.
As soon as we were relegated andthe results didn't really matter
in terms of position in the league,I just started winning last week.
It was Lett two and that was great,and then it was six now yesterday.
So yeah, I'm not going knock it.
Pressure's off.
So
(04:11):
I'm hoping when I'm down nextSaturday of the same sort of thing.
No pressure, just play thegame and play hopefully.
Hopefully I'm not a,
a Jonah that will spoil
dropping a league can
sometimes be quite good for things.
It's almost like a, a lesson in life.
(04:32):
Yeah.
I've had a few of them.
And the thing about
football and sport are strange, especiallyin the world leagues in Scotland, is.
In the lower leagues, you don't keep
the same players.
Sometimes you just suddenly youdon't keep the same players.
It's like you offerthem one year contracts.
There's nothing kinda long term.
(04:54):
So I, I believe that all theplayers that are there probably
leave and even the manager.
So be a total new start, I imagine.
But I'll leave that until till next year.
The thing about football was not tothink too far ahead, just enjoy the
moment
and that's what I. Dad'sbirthday with ruin his team.
Get beat.
(05:15):
Yeah.
It's my mom's birthday today too.
So Easter bunnies.
Yeah.
My Easter kind of changesit late this year, isn't it?
Easter
18th, April's good
Friday.
I know.
Even I know that is because the local,kinda the local community group in my
area that does things for, for children.
(05:37):
Families, they've got a kindaEaster, which is on a good Friday.
So that's the only reason I knowthat Easter Easter's coming up.
But yeah,
I, I think the Grand National's moreof a sort of annual timer 'cause it
always clash with my mother's birthday.
It's not, not my follow, but youknow, it's on and it's a very
(05:58):
popular thing even with people
that don't, generally, notgenerally interested in that thing.
It seems to be like the thingnobody kinda looks forward to.
Not for me, but that's what I like though,and always is like there's these different
things that people can look forward to.
Some good for you, probably somenot too good for you, but it's
(06:18):
like at least there's something,there's this sort of date.
Occasion that you look forward to.
It'll be all year round, and
that's one of them.
For some people.
What I don't like about thistime of year is insect bites.
My mother used to say They like
your
bloodstone.
(06:39):
I wouldn't insect bites you.
I suspect it's triggers or the berry bug.
It could be spiders, could be.
It's just disturbing the garden andthe long grasp again, come up again.
It could be fleas, who knows?
I dunno if you're ready forthis, but I did my first bit of
(07:03):
advocating out in the world thisweek being that, being a, the autism
acceptance month, the, the, uh, endof this whole thing that I've been
doing with this local group, aim to.
Monday and Tuesday and I wasthere for it and it was not what
(07:27):
I was expecting, to be honest.
Perhaps maybe a little bit moreramshackle than I thought it was gonna be.
And I did get on the television, which was
something else.
Was this a presentation you spokeabout last week that you were gonna
observe or is this something else?
Lucy?
Oh yes, the thing thatwas gonna go unobserved.
(07:49):
So I messed up the first week and I gotthe wrong day for the actual talk, but.
Realized what thetimetable was after that.
And so it was in the local lendinglibrary, but they, they let us a
space to put up a kind of a ball, youknow, with some bits and pieces on it.
Mostly what I'd been saying, 'causeI'd done a lot of work for them.
(08:09):
So I had my own little cornerwhere all my quotes and comments
and suggestions and you know, justdescribing the autistic experience.
So I had all that up in the library.
And then I did man the storefor a week and had some very
interesting conversations.
Not many, but the, uh, biggestthing for me was the talk up in
(08:31):
the library upstairs, which Iwas not, I. Necessarily a, well,
I wasn't a part of it at all.
Not my words.
It was a couple of otherladies that were doing it.
Maybe touched upon upon a fewthings that I thought, and it was
a little bit, oh, I don't know.
I, I, I, I dread to say theword sixth form, but that's
how it felt as a presentation.
(08:53):
And the woman who's been running thisgave me a, a very sharp elbow at one point
and said there was gonna be a camera crewcoming along and would I mind awfully if
you, if it's okay with you, maybe, uh,kind of pushing in and being part of it.
So I kind of took it over as it were.
I think she wanted me to go there andsort of maybe keep them in line, but
(09:15):
some of the things they were saying were.
Possibly not something that I would'vebeen on board with, but I came away from
the whole thing being really exhausted.
I spent, I spent four hours stayingat that stall, sat through and got
recorded for a local TV channel as well.
I mean, it all went okay.
I dunno how much was learned,and I felt like I was very much
(09:37):
the biggest part of it, really.
I wanna congratulate you, Lucy.
That's a, that's areally, really big deal.
What you've done there, workingthrough these people that, as
you've said, it's been difficult.
They haven't got it a lot of the time, andthen ending up in a situation you weren't
(09:59):
expecting to be the person speakingon tv, you know, fair play to you.
Really, really well done.
Great.
I know that sounds odd.
It's.
You know, a voice like mine, itsounds a bit patronizing, but please
accept it in a, in a really nice way.
(10:20):
What I'm saying.
I No, no, absolutely.
It is.
Thank you.
It was really daunting becauseit's a little bit like kind
of herding cats, you know?
They, it, it's, they're allover the place and you can't.
I can't really get them all intothat same place of thinking.
And a lot of what I was doing, especiallyon the second day, because I had to
(10:42):
stand in front of this display board,which had a lovely picture of me on it.
And the, the about 2000 quotes, quotesI'd made on the wall, and then they
made a booklet out of my whole thing.
I about wrote them a little piece on amisdiagnosis and sort of how it could you,
as on your journeys, you, you might get.
50 different diagnosis beforethey finally reached the one
(11:05):
that, that, that suits you.
And because of that, I was the voice.
So if they were stuck, I waspushed forward and I was having
conversations with people aboutautism and it, and it was interesting.
There was not great footfall.
I wasn't expecting it, but I feellike I did something worthwhile,
even if I've been absolutelyknackered for the rest of the week.
(11:25):
By the time I got home, mybattery was as flat as anything.
So I've had the rest of the.
Draggy, you know what I mean?
Like just not having the energy toeven think about this sort of thing.
But I mean, I, I know withhindsight, I probably did a,
a good enough job for them.
I've still got one moremeeting with them, so
we'll see.
You are the voice and I was theonly voice, and that was the thing.
(11:51):
Well, we can only do what
you can do.
From what you're saying and fromwhat others have said as well,
it's a well done for me as well.
I mean, that's a big thing you takeon trying to get people to understand
and trying to getunderstanding within and,
you know, to, to speak, to be the voice,
(12:12):
you know, to, you know, withinthese, you know, people are skeptical
or lack of understanding's a, atough thing to do and so at least.
From what you're saying that you feelthat, you know, progress has been made,
but it certainly feels like progresshas been made in a way that you feel
it's worthwhile, the whole effort todo so, because all the energy that it's
(12:35):
taken, you know, for you to do that.
And it was always going to take thatsort of energy because when you do
something like this, you're going to doit with all your heart as much as you
can and, and you know it's gonna drainyou, but you always hope that being
drained.
I
(13:04):
mean, I was policing thema little bit as well.
One of the things they put front andcenter on the stall, which I, I came
in and went, I don't think we'llhave, that was a big book book about
Asperger's and quotes that, you know,it was, it was all about Asperger and
sort of, and I thought, well, maybe weshouldn't be talking about them more.
Um, maybe dubious parts of the history.
(13:26):
I mean, there is a time and place forthat, but the local regional library
right next to the children's circlessort of first section wasn't one of them.
So I had to kind of even edit thebooks that they were putting out
on, on the stall and say, these areall really old books, really old
attitudes, and you know, they mustbe kind of removed from the area.
So this is how it was, it was,I, I was walk, everything I
(13:48):
time I saw them do something.
I was like.
I inward, inwardly,cringing and just moving on.
But yes, I did it.
I'm glad I did.
I had a couple of really valuableconversations with a few people who
were not sure about their autism.
One lady in particular who wasin her seventies and felt that
this was something that she.
(14:09):
Definitely felt she hadn't how to,what her next steps and should she even
try and get a diagnosis At her age.
It became quite interesting, but on aone, one-to-one, me and a and other person
rather than the group as a whole whoweren't able to have those conversations.
From
an autistic experience point of view,I think the interesting thing you
(14:32):
are saying is how after the eventyou, you know, you were wiped out.
Washed out.
It had taken a toll on you.
I'm guessing that that's becausefor the weeks previous it, now
you went the week before as well,and you've been working on this.
(14:54):
All of that has been in the background.
All of that has been going through yourbrain, whether you are asleep or not.
And, and then the final thing, whenyou've actually done it, it's like a huge.
Huge performance and a huge involvement.
And then, and then you crashbecause of all of that run up to it.
(15:16):
And I think that's something peopledon't understand how much work we
put into things before they happen.
You know, we didn't just wakeup that morning, go out and,
and go and do a performance.
It's been going on andwearing at us all that time.
So that's why we end up soexhausted in the end, isn't it?
Utterly because you have allthe conversations in your
(15:39):
head before you get there.
So you're trying to look at it from lotsof different angles and trying to see
how you can make this something thatis a, a learning thing, what you know.
And also one of the other things that Ifound is that I had to be very prepared
for questions and not all the questionswere ones that had a simple answer.
And we are talking about peoplewith very old fashioned ideas.
(16:03):
Who hadn't, hadn't really done anyresearch into it, had turned up at this
sort of focus group trying to kind ofget this thing together, but didn't
have the necessary understanding.
So I was having to teach the people whowere going to be standing at that stool
and, and talking about my condition.
(16:23):
And I'm very proud and privilegedto have to be who I am.
And I, you know, so I felt like I wasin, coming from a place of defense
a lot time where I had to shut themdown and say, no, that's wrong.
Uh, you know, but I mean, theydeferred to me a lot because,
because of the lack of knowledgemeant that I was always on stage.
I was on stage four hours and, and whenI got home, and even now I slept in this
(16:44):
morning 'cause I'm, I'm just feeling likeI have to recharge that, that battery.
I mean, it's an effort that, thatwe all do in many things anyway, you
know, out with something is, is youknow, as big as what you've done, Lucy.
It's like there's a lot of preparation.
(17:04):
There's preparation mentallyand there's preparation.
'cause you want to write itdown so you don't forget.
Even though in the main, you don'tgenerally forget because you're
so ingrained, but you just do
so you prepared.
Preparing
over
over, you know, over analyzing.
(17:25):
A lot goes in and things
well in advance because I've not donethat myself before when I was dealing
with certain things or involving certainprojects as I do things well in advance.
And you're talking about a month or somepain before the actual event itself.
So it's long running, long preparation.
(17:46):
And then after
it, it's just like a release.
If it goes well, if it doesn'tgo well, there's a lot of
kinda, you know, there's a lot
of kinda self criticism, criticism,you know, for other people as well.
Depending what happened at a lotof self criticism, despite all that
(18:06):
preparation, all that thing you'vedone, done as much as you could.
Something goes slightlywrong, you feel in your head.
It's just like a catastrophesometimes, and you're drained and
disappointed, and that's a hellof a place that you dread to be.
So that's something that you fearwhen you're appearing something as
(18:36):
big as this or anything along the linesof preparing something, advance, something
that you're doing to, at end of theday, you wanna make a progress forward.
You know, like you are involved in a focusgroup or involved in a project, something
that's worthwhile, the time that you'reputting in, rather than a lot of things
I've been involved, I think we've allbeen involved in in one time or another.
It's things where you're bulletas it's talking and it just
feels you're not moving forward.
(18:56):
It's just talking.
And I'm not saying talking's notimportant, but there's always that need.
Certainly in my position,there'd be some progress.
So you're not just.
Doing something on thespot, you're actually moving
forward at least once there.
Yeah.
I think what you said there, Harry,about you come away from these things
(19:17):
and you feel a bit high that youmanage to do it and that you manage
to get all these things across andthen, and then you're right, you start
saying, oh, I should have said this.
I could have done this, I couldhave done this differently.
And you start beating yourself up again.
And that seems totally part ofthe autistic experience to me.
As you know, I've, I've just donesomething in London and I came away
(19:45):
exhausted, and I came away thinkingI could have done it differently.
But the thing I want to talk aboutnow is I'm, I have an invitation to
go and do something in a month's time,and I'm not actually going to do it.
For reasons I'll talk aboutlater, but I'm still doing all
(20:06):
that bloody work in my head.
I'm, I can't since, since it wassuggested, I am con almost continuously
having arguments and discussionsabout what, what it should be done,
what the format should be, what thecontent should be, why I'm not doing
it, why it's unfair to ask me do it.
(20:27):
And all of that stuff.
So even if we, even if we don'tend up doing something, the
preparation is still wiping us out.
That is true.
Because even if you're doingwithin yourself, you're trying to,
(20:48):
not trying to, you're.
Thinking yourself of why you're notdoing it and the reasons for it and
why you think doing this particularthing wouldn't be the best way
forward, or just a to non-starter.
And it's just sort of convincing yourself
that you've not, not back a goodopportunity maybe, or even just
reasoning, even if you think it'stotally a Douglas what's being
(21:10):
asked, it's just like it's so can.
Overthinking the reasoning andeven preparing and what it'd be
like if you were doing it anywayand why you wouldn't do it.
So I think I'm getting just,
yeah, I, I think totally.
Even if I'm not doing something, evenif I say I. No, that's not something
(21:31):
I'm, I'm gonna prepared to do.
I, I will think about theformat and the what, what it
would be like if I was there.
I, you know, I, I, I picture myself inthis situation and work out how I would
be, what I would say, and, and, and, youknow, it would still be in my head in
a, kind of like a should I or shouldn'tI, so, you know, do I have enough here
(21:51):
to take with me do, if, if I decidedall of a sudden I was gonna do it.
Would I be prepared for it?
And yeah, so I, I get that same feelingof pre-planning for, for, for nothing.
A while, a while back I was doingsome workshops with an organ local
organization called The Expert andmyself, where we learned how to do, do
(22:23):
training.
That for, that for me waspretty exhausting even though
I wasn't doing everything.
I think part of the reason it's soexhausting is because it feels so
important to us because it's aboutautism, but I also think it's about the
autistic experience on anything we do.
I think to some extent I would feelit if I was giving a talk on business.
(22:45):
The Cav?
No, the caveat probably is it, it's evenmore intense when we're talking about
our own experience and our own identity.
Everything.
I do it all.
All
left or nothing.
Yeah.
Full speed or don't do it.
Give it your all or don't do it.
I get it.
(23:06):
Yeah, absolutely.
I'm the same.
If my heart's not in something, I just,
I
don't do it.
But
most things, if I really into it, Ido give, I give everything, and I've
done that with many different things
(23:27):
and personal with groups andorganizations, and it just feels
like if you don't give your all.
It's not worth doing atall, doing things half fast.
This doesn't even work for me.
And if I feel that I'm doingthat, if I'm falling away to that,
that's when I beginning to decide,well, maybe this isn't for me.
'cause I don't like that.
I like to be feel throttle, or I liketo be even exhausted because I failed.
(23:51):
I've really done something I, andI've done something worthwhile in
terms of my own efforts at least.
And
that's what gets meoutta bed in the morning.
That's what gets me todo the things that I do.
You know, look, look this, forinstance, or later on when I do
the, you know, the radio was like,it's worth doing, you know, and even
(24:12):
enjoying doing, there's some things like
in the past with, for instance,and I didn't enjoy it to an extent,
but I was beginning if fuel wastailing off because I wasn't that.
A lot things about it, likebeing involved within a charity
and how it works in terms ofit being a whole day thing.
(24:34):
And I felt like I had to do the fullday thing, couldn't do half day 'cause
I felt a bit half-assed because of the,it was doing financial and admin stuff.
I feel like I half to do it through.
I just felt I was
tailing off and I justfelt of tailing off and my.
(24:55):
And interestingly, it was a artisticperson that actually took my place.
And I remember they were kindof saying to me, you know, just
show, just show what you do.
So I can't remember the, the man's name.
And he basically wanted quite quickly andjust wanted to be left alone to kinda get
used to what his new role was going to be.
(25:17):
And he was going to go through throttle.
So yeah, I totally get that.
I think we get taken advantageof in all kinds of places because
we go full throttle, then weget worn out and discarded.
But there's something in the text that'shappening here that I can't articulate.
Somebody else will have to workthat out for me because I, I don't
think I can put the words to it.
(25:40):
Sorry, Jules is what I just put in there.
It's a lot of what you've put inthere, Raymond, because I. If, if,
if you, if I do it, it's not gonnamake as much sense as if you do it.
Which particular part?
Okay.
We'll make it a conversation then.
You were saying that you get high justgetting back to your routine and comfort
(26:04):
zone and you call that a bad habit.
And, and then you said, well, puttingthat text in is like piggy piggybacking
on the ideas that are happening atthe moment, like rewriting a song
from a guide tune and you say,it's like wanting to do it my way.
Are you, are you saying sort of likepushing the conversation in your direction
(26:26):
is your way or what is it you're saying?
No, that was referring to whateveryone was discussing about when,
when you, when you don't do something.
In what you said aboutcanceling something, but then
still thinking about doing it.
It's like something about appealsand you want to work it out.
(26:49):
Well, that's what I was reflectingon myself, is like, I've avoided
things and cancel things and becauseI don't want to go there, I, I don't
want to The situation something.
A positive way I spin that isthat I'm trying to do the thing.
(27:13):
I'm avoiding my way in my head,so I'm trying to get something
creative out of what I avoided.
So that was referring to that bit.
I got it.
That that's, that's really deep.
That's really important.
I get it.
And being
high, getting back to my routine andcomfort zone, which can be a bad habit.
(27:34):
I'm not saying it is a bad habit.
I do it all the time and I'm quite happywith it, but it could be a bad habit.
I'm open to that possibility.
Often people have said to me, it's abad habit, but that's their opinion.
Okay.
How about us throw this out for advice?
I'll describe the situationand the group can tell me.
(27:59):
After we had that incrediblysuccessful presentation at the UK
Society for Behavior Analysts at theirannual conference down in London,
various people have come forwardto want us to do things with them.
One of them is the head of the somethingover in Ireland, the uk sorry, the
(28:20):
Irish version of the behaviorists.
We've done something, or I, I wrotesomething for their journal that's
coming out in their spring editionof the Journal about artistic radio.
So I've already done something for them.
I've written a piece for them freeof charge, and they contacted.
A conference for theirorganization, the PBS organization.
(28:45):
So the first was A B, A, the secondone is PBS, and this is the biggest
conference in the UK to do with PBS.
So it's basically theother half of the ABAs.
And they want me to go alongto their conference, which is
quite close to me in Newcastle.
And they want, they wanta very specific format.
What they wanted me to do was to set up.
(29:08):
A dummy recording of a podcast that we dofor autistic radio with potentially one
or two of the a BA is being interviewedby me on a stage in front of an
audience, and I said immediately, yes.
Okay, I can do that.
That actually would be a veryuseful thing for us to do.
(29:28):
I don't mind going over to Newcastle.
I don't mind stayingthere a couple of nights.
I don't mind going to their eveningsoiree and doing a bit of networking.
So I said yes, sent the email,and they come back to me.
Do you want to have a meeting about this?
I. And I say, no, I don't want to havea meeting about this at the moment.
I'll take the email option.
(29:49):
At the moment, there's no point me.
Your time is valuable.
My time is valuable.
There's no point us having ameeting about this because I
haven't yet heard about the budget.
When I hear about thebudget, then I can plan this.
So essentially what I'm saying to themis, I'm not willing to do any more work on
this until I know whether we're gonna get.
(30:12):
Compensated or whether I'm gonna haveto pay out of my own money for the
privilege of going and educating.
So we come back with, they come back,one of their administrators comes back
to me and they say, yes, we agree.
You can go to the whole conference Jewels.
We won't charge you.
(30:32):
Yes, you are invited to theevening meal to go along with
all the professionals and.
Yes, we will pay for you to staya couple of nights in the hotel
in Newcastle, and yes, you willget a hundred quid pocket money.
They didn't call it pocket money.
I called it pocket money, butI don't feel that's sufficient.
(30:58):
I feel that I'm an outside speakerand I will be taking two days away
from my business or my profession.
And a hundred quid is unlikely tocover the extra meals and pocket and,
and sandwiches and things that mywife and I have while we're there.
(31:18):
So I wrote back and I said, no, I won'tdo this format that you are expecting.
You don't have the budget for it, butI will do something much more modest if
you wish, and I will send you an invoice.
And if that invoice is paid,then we can go from there.
I contacted two of the contacts,Andrew Schwart figure, and
(31:41):
the guy over in Ireland thatsuggested it in the first place.
And I said, what do you think of this?
And the guy from Ireland who suggestsit, pointed out that, well, he's coming
over to speak and he's paying his,he's paying his bear to get there,
and he's not being paid to present.
(32:02):
But that's not the point is it?
The point is that he is part of thisorganization and I'm external, and what
he will be doing is gaining personaladvancement in his profession by speaking
at a conference, and he would be goingthere anyway as part of his ongoing.
(32:29):
Education as a professional.
So it's a necessary part of hiseducation to go to these conferences.
It isn't for me, I'm outta pocket,whereas these people are gonna
get the opportunity to speak toother people and get further jobs.
All those kind of things that you haveto do to invest in your own profession
(32:49):
and invest in your own career.
So the comparison between an outsideperson coming and speaking and somebody
from the profession taking advantage ofthat and having the possibility of getting
on in their career entirely different.
And then I point and the point,the point is that it costs
(33:11):
499 to attend this conference.
There's gonna be several hundredpeople that are paying 4 99.
And then there is extra income cominginto this conference because it's also
broadcast worldwide on the internet.
So as a moneymaking scheme, thisconference is asking its talent to be
(33:37):
almost unpaid, to make a profit on thefees that are paid for the conference.
So what do people feel that Ishould be doing in this situation?
Well,
what you're certainly doing is testing thewater, seeing what they're all about, and
I think they probably have in their mind,if they said a hundred pounds, a glass's,
(34:01):
a lot of money that'll entice you, whichmeans they don't actually understand
who they're talking to and why,and why you would want to go along.
I think you've been reasonable.
I think you've been real andunderstand your position.
Consider them what all you've saidbecause this is a big commitment.
(34:24):
This isn't just a day out or an afternoonout to speak somewhere, which in itself
has a lot of preparation, a lot of thingsthat needs to be done, as we just talked
about in terms of mental preparation,you know, physical preparation and all
that, and all emotionsand all that come with
(34:45):
it.
So I don't think you'rebeing unreasonable.
I think you're being real andyou, you're kinda shown your hand.
Basically.
You'll take me seriously or I won'tgo, which is a fair thing to be because
they seem to come across as like
they're doing you a favor by invitingyou or giving you, you know, a way in
(35:12):
and.
Which I all think the right approach.
It should
be a partnership working at leastmy, the corner, you know, just
getting information off hand.
I think you're being undervalued.
I've, that, that's,that's what I'm thinking.
That they, they know you'regonna come along and do the work.
And do the work.
Well, I think that in a lot of ways Iwould, in my own sense, I would feel
(35:34):
undervalued if that, that's all you can,if that's all you can muster up for me.
I wouldn't want to go andI wouldn't want to do it.
And honestly, yeah, I think that the onlyword I can think about is, is sort of
really undervaluing you as the resourceyou are and what you can bring to it.
A hundred pound in yourpocket is nothing at all.
(35:57):
Nothing from the amount of workand sweat that goes into these
things before you get there.
Okay.
I can see in the text that there's otherpeople saying that they agree with me.
But here's the problem.
It is an opportunity, isn't it?
You know, we are not yet out on the scene.
We've spent three years dealing withprofessionals that have used us in
(36:20):
conferences and used us in variousways, and we've done it for free.
You know, I've spenthours and hours and hours.
I mean, yes.
Okay.
So we've been paid for a presentationfor the Alzheimer's thing, and
the autistic group paid, paid ina couple of hundred quid into the
charity for the one hour that I didvirtual presenting to their group.
(36:45):
But it's, it's,
am I cutting off my face or am I making.
Stand to set it up so we don'ttake and get sidelined in future
it, it's really difficult.
The power of no to say,no, this isn't good enough.
(37:08):
You must value sometimes works,but sometimes it just says,
oh, well, we'll forget that.
We'll move on to the next thingbecause they don't see our value.
Well.
I mean, what is the marketvalue of a presentation anyway?
We certainly over a hundred pounds
and the, I suppose they kindagiven themselves away, by the way
(37:33):
they're approaching this anyway.
But going back to you sayingno, I don't think you're saying
no for the sake of being.
We need to be taken more seriously.
You need to be taken more seriously.
It's like you don't want to justbe this talking autistic person or
(37:55):
talking autistic organization that they
throw a few to say, look, weinclude people and then tick a box.
You've got to be taken seriously, andthis is a way and a nice, confident way
of showing No, no, you know, we've gotstandards, we've got high standards, we've
(38:19):
got.
We're not just gonna just say yes toeverything that you, you invite us to, we
want to, you know, you just talk about agenuine seat at the table sort of thing.
It's not just being invited.
It's about being listened toand being involved as well.
I mean, they can say that to anybody.
Well, kinda reminds me aboutthese kinda groups at these
meetings I went to years ago.
(38:40):
It's like mental health, mental health,kinda, um, health board things and
council things that it was people
that were service users and carersof the service, mental health.
And what they would do is giveyou maybe 10 or 20 quid, you know.
(39:02):
To be there.
And this is including people that havedo presentations and have, and they've
talked about their own life story andthey've been through quite, you know, an
intense journey to give that presentationfor the benefit of people that are
invited to these events or these meetings.
So I think the right to, tomake a stand, I don't think
(39:24):
it'd being awkward in any way.
I mean, it's a brave step, butcertainly the right step in my opinion.
Is there a number or a figure that you dofeel that you would be comfortable with
that you could go and suggest to them?
Um, it would be clear,
well, this is where it gets evenmore complicated because they think
(39:47):
they're doing us a favor and theyare doing us a favor in some way.
This is last minute.
This conference is.
In a few weeks time.
I think it's at the end of endof May, but all of the main spots
are already taken at, so they'reshoehorning us in perhaps, or they're
(40:11):
putting us into a workshop position.
And that's not really thatvaluable to me because, and.
If I haven't been advertised in advance,there's not gonna be the audience.
So I either need a bigger audienceor I need to be compensated
(40:33):
for losing out my income.
Now, everything that getspaid goes to the charity.
Everything that.
Got paid that has been paid in the past,goes through the charity, but I often
have to put money into the charity tothen pay out my travel and expenses,
(40:56):
because the way I'm gonna do thingsis gonna do things comfortable to me.
So is there a number of figure?
No, I, I, I don't know one, but Idon't want to be taken for a ride.
Um, at this moment in time, if weare doing this for our publicity,
(41:18):
it has to at least compensate fornot earning in in my business.
So I pick a figure out the head, andI think if, if the maximum price for
a weekend in person is 499 poundsfor one candid, one, one delegate.
(41:40):
Then we have to be at leastat w, at worth at least one.
Delegate B we point.
Yeah.
In certain how much it is.
It's a lot more than a hundred.
A
hundred sounds pitance.
Anyway, and as you see,it's like last minute thing.
(42:00):
See the thing about all this, it's not,you know, doing a favor, et cetera.
It's, you know.
This isn't this, I mean thisis work, this is effort.
This is going out yourway for a couple of days.
This is big deal.
So I don't understand that approach.
It's like, you know, likethey're doing you favor or
not
they're giving you
(42:23):
an opportunity, butyou've provided something.
You're not there for a holiday.
You're not
there.
You know, there provide so.
Providing a service and providinginformation, providing education and
education from your experience, fromexperience of Autistic Radio and Autism
(42:43):
association, the charity, you know,
whether we want to talk aboutthat, it's very valuable itself.
Can I remind you, Harry, the nameof the charity of which you are, the
secretary is Autistic Associationand not Autism Association.
I thought I'd go here withit 'cause we're not live.
(43:05):
Yeah, I would remember that.
At least I didn't see our berger.
Yeah,
I think that made Lucy laugh 'cause I justsaw a, an image come up on the screen.
She'd accidentally touched her.
Um,
yeah, yeah.
That, that was meant to be key.
The mic on.
But you could see I wassmiling, so I agreed.
(43:25):
Your thing is autistic associationsis actually easier to say.
Yeah.
I mean, the purposeful thingwas to say we are autistic.
Our autistic association, I isn't justabout autism because autism generally
the neurotypical charity anyway.
(43:47):
The only people who haven'tgiven an opinion this.
Would be Nicola and Robbie, isit putting you on the spot to
say what you feel about this?
Because at the moment the voting, if wewere a democracy, the voting would be to,
to go along my lines and say no to this.
(44:08):
But that doesn't mean itisn't valuable to dissent,
quite honestly.
I would just abstain, like I reallydon't feel like informed or knowledge
knowledgeable enough to have like.
Worked out opinion on this.
I'm kind of gonna just sit on the fence
and cheer you on
(44:29):
now.
I would agree it's not enough
money for your time.
Would anybody else liketo do it in my place?
I've done it again to me, Cameron.
Yeah.
If I was nearer and I could get there andI had a little bit more time, I would.
Because,
you know, not something I wouldn't do.
(44:50):
I know for me at this particularthing, they'd have to up the money
a bit, think a hundreds a bit crap.
The thing about the hundred poundsis I find quite amusing, is because
you think, oh, give a hundred pounds.
That'll, that'll taste.
That'll be, it's a big number for this
particular person, thisparticular organization or group.
(45:10):
It's like.
Well, it's interesting.
We've heard about Lucy's thingreally successful, and we've heard
about this, thinking about it.
We just have to look forward tothe future and hope that we build a
(45:30):
bigger platform through artistic radiofor them to take us more seriously.
I suppose that's the only way forward.
Take us more seriously because they've,they've listened to what we do.
Again, can you explain tome who are they and why
are they so important?
PBS is the positive behavioralsupport, which is the up and coming
(45:56):
majority application to supportyoung people and autistic people.
It's paid for by government and by.
It's, it's the therapy for autisticpeople, which has the long-term history
(46:16):
of a behavior behind it, which is verycontroversial because certainly in
the past and to some extent now it's,it's been associated with conversion
therapy or difficult practices.
But at this moment in time, they,they're hoping to say that they've
disassociated themselves from.
(46:37):
Past practice that modernbehaviors have taken into account
the neurodiversity principle.
But there's large numbers of autisticpeople that are actually still protesting
against it because they do not believethat and they see it as a white watch.
So why it's important is, is to haveinfluence over whether, whether practices
(47:03):
that develop and continue to develop.
Including the autistic experiencein a more positive way than
has happened in the past.
So it's been autistic radio'sethos to try and be constructive
towards positive things rather thanjust being a protest organization.
(47:26):
Gotcha.
Thanks for that.
Just looking at the timethere, so won't expand.
Yeah, one hour doesn't last verylong for the drop in, but we've had
a great conversation and thank youfor the people who've texted there.
Let's join again for the drop in at 4
44 next week,
Thank you to all the people who havetexted, and also to the people who
(47:47):
have put their voices to this thatare gonna allow us to put some of
those words out into the podcast.
If you join us here at the 4,4, 4, your voice isn't recorded,
your text isn't recorded, but thepeople here have given permission
so that it's an example for others.
See you again.
Always reliably Sunday.
(48:10):
Four four, 4:00 PM 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.
(00:46):
Interesting day.
It's my dad's birthday today
and I was just down,jusT down at his house.
You know this there to be celebrationthing, and it's a weird one about
being artistic in artistic way isI felt bad that I was leaving there
to come up here to do this and.
Took time
(01:10):
off tonight to do this and the 555, I would feel bad for you, but
I feel bad for not doing this.
It just seems like no matter what decisionI made today, I would feel sort of guilty
for some reason, but I just, I just wish I
wasn't late.
I just realized frustratedbecause it was a good day.
I think it's because,
(01:37):
sorry.
The radio to do
tonight.
So, yeah, it's just weird too.
I'm
used, I feel human.
It means I'm a good person,that I feel bad for the sake of
feeling bad sometimes, but it's
annoying.
Yeah, I can hear everybody now.
If anybody can hear me, I can hear you.
(01:58):
Oh, lovely voices.
Hi there.
Good evening.
How are
things with me?
Hmm.
That's gonna be a reallylong conversation.
Maybe.
Maybe I'll save that for a little bitwhilst we will say hello to everyone.
Well, I was basically been saying
hello long forum, so Yeah, not problem.
(02:21):
Yeah.
You sound well fedHarry, and well, what's.
Up,
hydrated, lubricated.
That's the one I'm caffeinated.
(02:42):
Asper,
want my third cup of coffee today?
Uh, and I just had about my dad'sbirthday cake, which was nice.
It was just like, oh, you can't stay for
dinner.
Do you want a bit of cake then?
Okay.
So kinda happy.
(03:03):
I think the sun shining helps as well.
And my football team winningsix null yesterday helped.
You know, so it's the simple things.
I feel as though we might beready here for a, a regular Sunday
football report from the Saturdayresults here, Harry six nil.
(03:25):
Wow.
Yeah, was surprised, uh, I wasn't inthe game myself because in a big game I
just go to the home games and I was justwatching the, the goals come through.
The thing that's strange withoutgetting any big detail about it is them
bath in the team, that support beenstruggling all season, hardly got a win.
But as soon, and there's been a difficultseason in terms of financial problems
(03:49):
and get points, deduct meaning it washard to stay in the league anyway.
As soon as we were relegated andthe results didn't really matter
in terms of position in the league,I just started winning last week.
It was Lett two and that was great,and then it was six now yesterday.
So yeah, I'm not going knock it.
Pressure's off.
So
(04:11):
I'm hoping when I'm down nextSaturday of the same sort of thing.
No pressure, just play thegame and play hopefully.
Hopefully I'm not a,
a Jonah that will spoil
dropping a league can
sometimes be quite good for things.
It's almost like a, a lesson in life.
(04:32):
Yeah.
I've had a few of them.
And the thing about
football and sport are strange, especiallyin the world leagues in Scotland, is.
In the lower leagues, you don't keep
the same players.
Sometimes you just suddenly youdon't keep the same players.
It's like you offerthem one year contracts.
There's nothing kinda long term.
(04:54):
So I, I believe that all theplayers that are there probably
leave and even the manager.
So be a total new start, I imagine.
But I'll leave that until till next year.
The thing about football was not tothink too far ahead, just enjoy the
moment
and that's what I. Dad'sbirthday with ruin his team.
Get beat.
(05:15):
Yeah.
It's my mom's birthday today too.
So Easter bunnies.
Yeah.
My Easter kind of changesit late this year, isn't it?
Easter
18th, April's good
Friday.
I know.
Even I know that is because the local,kinda the local community group in my
area that does things for, for children.
(05:37):
Families, they've got a kindaEaster, which is on a good Friday.
So that's the only reason I knowthat Easter Easter's coming up.
But yeah,
I, I think the Grand National's moreof a sort of annual timer 'cause it
always clash with my mother's birthday.
It's not, not my follow, but youknow, it's on and it's a very
(05:58):
popular thing even with people
that don't, generally, notgenerally interested in that thing.
It seems to be like the thingnobody kinda looks forward to.
Not for me, but that's what I like though,and always is like there's these different
things that people can look forward to.
Some good for you, probably somenot too good for you, but it's
(06:18):
like at least there's something,there's this sort of date.
Occasion that you look forward to.
It'll be all year round, and
that's one of them.
For some people.
What I don't like about thistime of year is insect bites.
My mother used to say They like
your
bloodstone.
(06:39):
I wouldn't insect bites you.
I suspect it's triggers or the berry bug.
It could be spiders, could be.
It's just disturbing the garden andthe long grasp again, come up again.
It could be fleas, who knows?
I dunno if you're ready forthis, but I did my first bit of
(07:03):
advocating out in the world thisweek being that, being a, the autism
acceptance month, the, the, uh, endof this whole thing that I've been
doing with this local group, aim to.
Monday and Tuesday and I wasthere for it and it was not what
(07:27):
I was expecting, to be honest.
Perhaps maybe a little bit moreramshackle than I thought it was gonna be.
And I did get on the television, which was
something else.
Was this a presentation you spokeabout last week that you were gonna
observe or is this something else?
Lucy?
Oh yes, the thing thatwas gonna go unobserved.
(07:49):
So I messed up the first week and I gotthe wrong day for the actual talk, but.
Realized what thetimetable was after that.
And so it was in the local lendinglibrary, but they, they let us a
space to put up a kind of a ball, youknow, with some bits and pieces on it.
Mostly what I'd been saying, 'causeI'd done a lot of work for them.
(08:09):
So I had my own little cornerwhere all my quotes and comments
and suggestions and you know, justdescribing the autistic experience.
So I had all that up in the library.
And then I did man the storefor a week and had some very
interesting conversations.
Not many, but the, uh, biggestthing for me was the talk up in
(08:31):
the library upstairs, which Iwas not, I. Necessarily a, well,
I wasn't a part of it at all.
Not my words.
It was a couple of otherladies that were doing it.
Maybe touched upon upon a fewthings that I thought, and it was
a little bit, oh, I don't know.
I, I, I, I dread to say theword sixth form, but that's
how it felt as a presentation.
(08:53):
And the woman who's been running thisgave me a, a very sharp elbow at one point
and said there was gonna be a camera crewcoming along and would I mind awfully if
you, if it's okay with you, maybe, uh,kind of pushing in and being part of it.
So I kind of took it over as it were.
I think she wanted me to go there andsort of maybe keep them in line, but
(09:15):
some of the things they were saying were.
Possibly not something that I would'vebeen on board with, but I came away from
the whole thing being really exhausted.
I spent, I spent four hours stayingat that stall, sat through and got
recorded for a local TV channel as well.
I mean, it all went okay.
I dunno how much was learned,and I felt like I was very much
(09:37):
the biggest part of it, really.
I wanna congratulate you, Lucy.
That's a, that's areally, really big deal.
What you've done there, workingthrough these people that, as
you've said, it's been difficult.
They haven't got it a lot of the time, andthen ending up in a situation you weren't
(09:59):
expecting to be the person speakingon tv, you know, fair play to you.
Really, really well done.
Great.
I know that sounds odd.
It's.
You know, a voice like mine, itsounds a bit patronizing, but please
accept it in a, in a really nice way.
(10:20):
What I'm saying.
I No, no, absolutely.
It is.
Thank you.
It was really daunting becauseit's a little bit like kind
of herding cats, you know?
They, it, it's, they're allover the place and you can't.
I can't really get them all intothat same place of thinking.
And a lot of what I was doing, especiallyon the second day, because I had to
(10:42):
stand in front of this display board,which had a lovely picture of me on it.
And the, the about 2000 quotes, quotesI'd made on the wall, and then they
made a booklet out of my whole thing.
I about wrote them a little piece on amisdiagnosis and sort of how it could you,
as on your journeys, you, you might get.
50 different diagnosis beforethey finally reached the one
(11:05):
that, that, that suits you.
And because of that, I was the voice.
So if they were stuck, I waspushed forward and I was having
conversations with people aboutautism and it, and it was interesting.
There was not great footfall.
I wasn't expecting it, but I feellike I did something worthwhile,
even if I've been absolutelyknackered for the rest of the week.
(11:25):
By the time I got home, mybattery was as flat as anything.
So I've had the rest of the.
Draggy, you know what I mean?
Like just not having the energy toeven think about this sort of thing.
But I mean, I, I know withhindsight, I probably did a,
a good enough job for them.
I've still got one moremeeting with them, so
we'll see.
You are the voice and I was theonly voice, and that was the thing.
(11:51):
Well, we can only do what
you can do.
From what you're saying and fromwhat others have said as well,
it's a well done for me as well.
I mean, that's a big thing you takeon trying to get people to understand
and trying to getunderstanding within and,
you know, to, to speak, to be the voice,
(12:12):
you know, to, you know, withinthese, you know, people are skeptical
or lack of understanding's a, atough thing to do and so at least.
From what you're saying that you feelthat, you know, progress has been made,
but it certainly feels like progresshas been made in a way that you feel
it's worthwhile, the whole effort todo so, because all the energy that it's
(12:35):
taken, you know, for you to do that.
And it was always going to take thatsort of energy because when you do
something like this, you're going to doit with all your heart as much as you
can and, and you know it's gonna drainyou, but you always hope that being
drained.
I
(13:04):
mean, I was policing thema little bit as well.
One of the things they put front andcenter on the stall, which I, I came
in and went, I don't think we'llhave, that was a big book book about
Asperger's and quotes that, you know,it was, it was all about Asperger and
sort of, and I thought, well, maybe weshouldn't be talking about them more.
Um, maybe dubious parts of the history.
(13:26):
I mean, there is a time and place forthat, but the local regional library
right next to the children's circlessort of first section wasn't one of them.
So I had to kind of even edit thebooks that they were putting out
on, on the stall and say, these areall really old books, really old
attitudes, and you know, they mustbe kind of removed from the area.
So this is how it was, it was,I, I was walk, everything I
(13:48):
time I saw them do something.
I was like.
I inward, inwardly,cringing and just moving on.
But yes, I did it.
I'm glad I did.
I had a couple of really valuableconversations with a few people who
were not sure about their autism.
One lady in particular who wasin her seventies and felt that
this was something that she.
(14:09):
Definitely felt she hadn't how to,what her next steps and should she even
try and get a diagnosis At her age.
It became quite interesting, but on aone, one-to-one, me and a and other person
rather than the group as a whole whoweren't able to have those conversations.
From
an autistic experience point of view,I think the interesting thing you
(14:32):
are saying is how after the eventyou, you know, you were wiped out.
Washed out.
It had taken a toll on you.
I'm guessing that that's becausefor the weeks previous it, now
you went the week before as well,and you've been working on this.
(14:54):
All of that has been in the background.
All of that has been going through yourbrain, whether you are asleep or not.
And, and then the final thing, whenyou've actually done it, it's like a huge.
Huge performance and a huge involvement.
And then, and then you crashbecause of all of that run up to it.
(15:16):
And I think that's something peopledon't understand how much work we
put into things before they happen.
You know, we didn't just wakeup that morning, go out and,
and go and do a performance.
It's been going on andwearing at us all that time.
So that's why we end up soexhausted in the end, isn't it?
Utterly because you have allthe conversations in your
(15:39):
head before you get there.
So you're trying to look at it from lotsof different angles and trying to see
how you can make this something thatis a, a learning thing, what you know.
And also one of the other things that Ifound is that I had to be very prepared
for questions and not all the questionswere ones that had a simple answer.
And we are talking about peoplewith very old fashioned ideas.
(16:03):
Who hadn't, hadn't really done anyresearch into it, had turned up at this
sort of focus group trying to kind ofget this thing together, but didn't
have the necessary understanding.
So I was having to teach the people whowere going to be standing at that stool
and, and talking about my condition.
(16:23):
And I'm very proud and privilegedto have to be who I am.
And I, you know, so I felt like I wasin, coming from a place of defense
a lot time where I had to shut themdown and say, no, that's wrong.
Uh, you know, but I mean, theydeferred to me a lot because,
because of the lack of knowledgemeant that I was always on stage.
I was on stage four hours and, and whenI got home, and even now I slept in this
(16:44):
morning 'cause I'm, I'm just feeling likeI have to recharge that, that battery.
I mean, it's an effort that, thatwe all do in many things anyway, you
know, out with something is, is youknow, as big as what you've done, Lucy.
It's like there's a lot of preparation.
(17:04):
There's preparation mentallyand there's preparation.
'cause you want to write itdown so you don't forget.
Even though in the main, you don'tgenerally forget because you're
so ingrained, but you just do
so you prepared.
Preparing
over
over, you know, over analyzing.
(17:25):
A lot goes in and things
well in advance because I've not donethat myself before when I was dealing
with certain things or involving certainprojects as I do things well in advance.
And you're talking about a month or somepain before the actual event itself.
So it's long running, long preparation.
(17:46):
And then after
it, it's just like a release.
If it goes well, if it doesn'tgo well, there's a lot of
kinda, you know, there's a lot
of kinda self criticism, criticism,you know, for other people as well.
Depending what happened at a lotof self criticism, despite all that
(18:06):
preparation, all that thing you'vedone, done as much as you could.
Something goes slightlywrong, you feel in your head.
It's just like a catastrophesometimes, and you're drained and
disappointed, and that's a hellof a place that you dread to be.
So that's something that you fearwhen you're appearing something as
(18:36):
big as this or anything along the linesof preparing something, advance, something
that you're doing to, at end of theday, you wanna make a progress forward.
You know, like you are involved in a focusgroup or involved in a project, something
that's worthwhile, the time that you'reputting in, rather than a lot of things
I've been involved, I think we've allbeen involved in in one time or another.
It's things where you're bulletas it's talking and it just
feels you're not moving forward.
(18:56):
It's just talking.
And I'm not saying talking's notimportant, but there's always that need.
Certainly in my position,there'd be some progress.
So you're not just.
Doing something on thespot, you're actually moving
forward at least once there.
Yeah.
I think what you said there, Harry,about you come away from these things
(19:17):
and you feel a bit high that youmanage to do it and that you manage
to get all these things across andthen, and then you're right, you start
saying, oh, I should have said this.
I could have done this, I couldhave done this differently.
And you start beating yourself up again.
And that seems totally part ofthe autistic experience to me.
As you know, I've, I've just donesomething in London and I came away
(19:45):
exhausted, and I came away thinkingI could have done it differently.
But the thing I want to talk aboutnow is I'm, I have an invitation to
go and do something in a month's time,and I'm not actually going to do it.
For reasons I'll talk aboutlater, but I'm still doing all
(20:06):
that bloody work in my head.
I'm, I can't since, since it wassuggested, I am con almost continuously
having arguments and discussionsabout what, what it should be done,
what the format should be, what thecontent should be, why I'm not doing
it, why it's unfair to ask me do it.
(20:27):
And all of that stuff.
So even if we, even if we don'tend up doing something, the
preparation is still wiping us out.
That is true.
Because even if you're doingwithin yourself, you're trying to,
(20:48):
not trying to, you're.
Thinking yourself of why you're notdoing it and the reasons for it and
why you think doing this particularthing wouldn't be the best way
forward, or just a to non-starter.
And it's just sort of convincing yourself
that you've not, not back a goodopportunity maybe, or even just
reasoning, even if you think it'stotally a Douglas what's being
(21:10):
asked, it's just like it's so can.
Overthinking the reasoning andeven preparing and what it'd be
like if you were doing it anywayand why you wouldn't do it.
So I think I'm getting just,
yeah, I, I think totally.
Even if I'm not doing something, evenif I say I. No, that's not something
(21:31):
I'm, I'm gonna prepared to do.
I, I will think about theformat and the what, what it
would be like if I was there.
I, you know, I, I, I picture myself inthis situation and work out how I would
be, what I would say, and, and, and, youknow, it would still be in my head in
a, kind of like a should I or shouldn'tI, so, you know, do I have enough here
(21:51):
to take with me do, if, if I decidedall of a sudden I was gonna do it.
Would I be prepared for it?
And yeah, so I, I get that same feelingof pre-planning for, for, for nothing.
A while, a while back I was doingsome workshops with an organ local
organization called The Expert andmyself, where we learned how to do, do
(22:23):
training.
That for, that for me waspretty exhausting even though
I wasn't doing everything.
I think part of the reason it's soexhausting is because it feels so
important to us because it's aboutautism, but I also think it's about the
autistic experience on anything we do.
I think to some extent I would feelit if I was giving a talk on business.
(22:45):
The Cav?
No, the caveat probably is it, it's evenmore intense when we're talking about
our own experience and our own identity.
Everything.
I do it all.
All
left or nothing.
Yeah.
Full speed or don't do it.
Give it your all or don't do it.
I get it.
(23:06):
Yeah, absolutely.
I'm the same.
If my heart's not in something, I just,
I
don't do it.
But
most things, if I really into it, Ido give, I give everything, and I've
done that with many different things
(23:27):
and personal with groups andorganizations, and it just feels
like if you don't give your all.
It's not worth doing atall, doing things half fast.
This doesn't even work for me.
And if I feel that I'm doingthat, if I'm falling away to that,
that's when I beginning to decide,well, maybe this isn't for me.
'cause I don't like that.
I like to be feel throttle, or I liketo be even exhausted because I failed.
(23:51):
I've really done something I, andI've done something worthwhile in
terms of my own efforts at least.
And
that's what gets meoutta bed in the morning.
That's what gets me todo the things that I do.
You know, look, look this, forinstance, or later on when I do
the, you know, the radio was like,it's worth doing, you know, and even
(24:12):
enjoying doing, there's some things like
in the past with, for instance,and I didn't enjoy it to an extent,
but I was beginning if fuel wastailing off because I wasn't that.
A lot things about it, likebeing involved within a charity
and how it works in terms ofit being a whole day thing.
(24:34):
And I felt like I had to do the fullday thing, couldn't do half day 'cause
I felt a bit half-assed because of the,it was doing financial and admin stuff.
I feel like I half to do it through.
I just felt I was
tailing off and I justfelt of tailing off and my.
(24:55):
And interestingly, it was a artisticperson that actually took my place.
And I remember they were kindof saying to me, you know, just
show, just show what you do.
So I can't remember the, the man's name.
And he basically wanted quite quickly andjust wanted to be left alone to kinda get
used to what his new role was going to be.
(25:17):
And he was going to go through throttle.
So yeah, I totally get that.
I think we get taken advantageof in all kinds of places because
we go full throttle, then weget worn out and discarded.
But there's something in the text that'shappening here that I can't articulate.
Somebody else will have to workthat out for me because I, I don't
think I can put the words to it.
(25:40):
Sorry, Jules is what I just put in there.
It's a lot of what you've put inthere, Raymond, because I. If, if,
if you, if I do it, it's not gonnamake as much sense as if you do it.
Which particular part?
Okay.
We'll make it a conversation then.
You were saying that you get high justgetting back to your routine and comfort
(26:04):
zone and you call that a bad habit.
And, and then you said, well, puttingthat text in is like piggy piggybacking
on the ideas that are happening atthe moment, like rewriting a song
from a guide tune and you say,it's like wanting to do it my way.
Are you, are you saying sort of likepushing the conversation in your direction
(26:26):
is your way or what is it you're saying?
No, that was referring to whateveryone was discussing about when,
when you, when you don't do something.
In what you said aboutcanceling something, but then
still thinking about doing it.
It's like something about appealsand you want to work it out.
(26:49):
Well, that's what I was reflectingon myself, is like, I've avoided
things and cancel things and becauseI don't want to go there, I, I don't
want to The situation something.
A positive way I spin that isthat I'm trying to do the thing.
(27:13):
I'm avoiding my way in my head,so I'm trying to get something
creative out of what I avoided.
So that was referring to that bit.
I got it.
That that's, that's really deep.
That's really important.
I get it.
And being
high, getting back to my routine andcomfort zone, which can be a bad habit.
(27:34):
I'm not saying it is a bad habit.
I do it all the time and I'm quite happywith it, but it could be a bad habit.
I'm open to that possibility.
Often people have said to me, it's abad habit, but that's their opinion.
Okay.
How about us throw this out for advice?
I'll describe the situationand the group can tell me.
(27:59):
After we had that incrediblysuccessful presentation at the UK
Society for Behavior Analysts at theirannual conference down in London,
various people have come forwardto want us to do things with them.
One of them is the head of the somethingover in Ireland, the uk sorry, the
(28:20):
Irish version of the behaviorists.
We've done something, or I, I wrotesomething for their journal that's
coming out in their spring editionof the Journal about artistic radio.
So I've already done something for them.
I've written a piece for them freeof charge, and they contacted.
A conference for theirorganization, the PBS organization.
(28:45):
So the first was A B, A, the secondone is PBS, and this is the biggest
conference in the UK to do with PBS.
So it's basically theother half of the ABAs.
And they want me to go alongto their conference, which is
quite close to me in Newcastle.
And they want, they wanta very specific format.
What they wanted me to do was to set up.
(29:08):
A dummy recording of a podcast that we dofor autistic radio with potentially one
or two of the a BA is being interviewedby me on a stage in front of an
audience, and I said immediately, yes.
Okay, I can do that.
That actually would be a veryuseful thing for us to do.
(29:28):
I don't mind going over to Newcastle.
I don't mind stayingthere a couple of nights.
I don't mind going to their eveningsoiree and doing a bit of networking.
So I said yes, sent the email,and they come back to me.
Do you want to have a meeting about this?
I. And I say, no, I don't want to havea meeting about this at the moment.
I'll take the email option.
(29:49):
At the moment, there's no point me.
Your time is valuable.
My time is valuable.
There's no point us having ameeting about this because I
haven't yet heard about the budget.
When I hear about thebudget, then I can plan this.
So essentially what I'm saying to themis, I'm not willing to do any more work on
this until I know whether we're gonna get.
(30:12):
Compensated or whether I'm gonna haveto pay out of my own money for the
privilege of going and educating.
So we come back with, they come back,one of their administrators comes back
to me and they say, yes, we agree.
You can go to the whole conference Jewels.
We won't charge you.
(30:32):
Yes, you are invited to theevening meal to go along with
all the professionals and.
Yes, we will pay for you to staya couple of nights in the hotel
in Newcastle, and yes, you willget a hundred quid pocket money.
They didn't call it pocket money.
I called it pocket money, butI don't feel that's sufficient.
(30:58):
I feel that I'm an outside speakerand I will be taking two days away
from my business or my profession.
And a hundred quid is unlikely tocover the extra meals and pocket and,
and sandwiches and things that mywife and I have while we're there.
(31:18):
So I wrote back and I said, no, I won'tdo this format that you are expecting.
You don't have the budget for it, butI will do something much more modest if
you wish, and I will send you an invoice.
And if that invoice is paid,then we can go from there.
I contacted two of the contacts,Andrew Schwart figure, and
(31:41):
the guy over in Ireland thatsuggested it in the first place.
And I said, what do you think of this?
And the guy from Ireland who suggestsit, pointed out that, well, he's coming
over to speak and he's paying his,he's paying his bear to get there,
and he's not being paid to present.
(32:02):
But that's not the point is it?
The point is that he is part of thisorganization and I'm external, and what
he will be doing is gaining personaladvancement in his profession by speaking
at a conference, and he would be goingthere anyway as part of his ongoing.
(32:29):
Education as a professional.
So it's a necessary part of hiseducation to go to these conferences.
It isn't for me, I'm outta pocket,whereas these people are gonna
get the opportunity to speak toother people and get further jobs.
All those kind of things that you haveto do to invest in your own profession
(32:49):
and invest in your own career.
So the comparison between an outsideperson coming and speaking and somebody
from the profession taking advantage ofthat and having the possibility of getting
on in their career entirely different.
And then I point and the point,the point is that it costs
(33:11):
499 to attend this conference.
There's gonna be several hundredpeople that are paying 4 99.
And then there is extra income cominginto this conference because it's also
broadcast worldwide on the internet.
So as a moneymaking scheme, thisconference is asking its talent to be
(33:37):
almost unpaid, to make a profit on thefees that are paid for the conference.
So what do people feel that Ishould be doing in this situation?
Well,
what you're certainly doing is testing thewater, seeing what they're all about, and
I think they probably have in their mind,if they said a hundred pounds, a glass's,
(34:01):
a lot of money that'll entice you, whichmeans they don't actually understand
who they're talking to and why,and why you would want to go along.
I think you've been reasonable.
I think you've been real andunderstand your position.
Consider them what all you've saidbecause this is a big commitment.
(34:24):
This isn't just a day out or an afternoonout to speak somewhere, which in itself
has a lot of preparation, a lot of thingsthat needs to be done, as we just talked
about in terms of mental preparation,you know, physical preparation and all
that, and all emotionsand all that come with
(34:45):
it.
So I don't think you'rebeing unreasonable.
I think you're being real andyou, you're kinda shown your hand.
Basically.
You'll take me seriously or I won'tgo, which is a fair thing to be because
they seem to come across as like
they're doing you a favor by invitingyou or giving you, you know, a way in
(35:12):
and.
Which I all think the right approach.
It should
be a partnership working at leastmy, the corner, you know, just
getting information off hand.
I think you're being undervalued.
I've, that, that's,that's what I'm thinking.
That they, they know you'regonna come along and do the work.
And do the work.
Well, I think that in a lot of ways Iwould, in my own sense, I would feel
(35:34):
undervalued if that, that's all you can,if that's all you can muster up for me.
I wouldn't want to go andI wouldn't want to do it.
And honestly, yeah, I think that the onlyword I can think about is, is sort of
really undervaluing you as the resourceyou are and what you can bring to it.
A hundred pound in yourpocket is nothing at all.
(35:57):
Nothing from the amount of workand sweat that goes into these
things before you get there.
Okay.
I can see in the text that there's otherpeople saying that they agree with me.
But here's the problem.
It is an opportunity, isn't it?
You know, we are not yet out on the scene.
We've spent three years dealing withprofessionals that have used us in
(36:20):
conferences and used us in variousways, and we've done it for free.
You know, I've spenthours and hours and hours.
I mean, yes.
Okay.
So we've been paid for a presentationfor the Alzheimer's thing, and
the autistic group paid, paid ina couple of hundred quid into the
charity for the one hour that I didvirtual presenting to their group.
(36:45):
But it's, it's,
am I cutting off my face or am I making.
Stand to set it up so we don'ttake and get sidelined in future
it, it's really difficult.
The power of no to say,no, this isn't good enough.
(37:08):
You must value sometimes works,but sometimes it just says,
oh, well, we'll forget that.
We'll move on to the next thingbecause they don't see our value.
Well.
I mean, what is the marketvalue of a presentation anyway?
We certainly over a hundred pounds
and the, I suppose they kindagiven themselves away, by the way
(37:33):
they're approaching this anyway.
But going back to you sayingno, I don't think you're saying
no for the sake of being.
We need to be taken more seriously.
You need to be taken more seriously.
It's like you don't want to justbe this talking autistic person or
(37:55):
talking autistic organization that they
throw a few to say, look, weinclude people and then tick a box.
You've got to be taken seriously, andthis is a way and a nice, confident way
of showing No, no, you know, we've gotstandards, we've got high standards, we've
(38:19):
got.
We're not just gonna just say yes toeverything that you, you invite us to, we
want to, you know, you just talk about agenuine seat at the table sort of thing.
It's not just being invited.
It's about being listened toand being involved as well.
I mean, they can say that to anybody.
Well, kinda reminds me aboutthese kinda groups at these
meetings I went to years ago.
(38:40):
It's like mental health, mental health,kinda, um, health board things and
council things that it was people
that were service users and carersof the service, mental health.
And what they would do is giveyou maybe 10 or 20 quid, you know.
(39:02):
To be there.
And this is including people that havedo presentations and have, and they've
talked about their own life story andthey've been through quite, you know, an
intense journey to give that presentationfor the benefit of people that are
invited to these events or these meetings.
So I think the right to, tomake a stand, I don't think
(39:24):
it'd being awkward in any way.
I mean, it's a brave step, butcertainly the right step in my opinion.
Is there a number or a figure that you dofeel that you would be comfortable with
that you could go and suggest to them?
Um, it would be clear,
well, this is where it gets evenmore complicated because they think
(39:47):
they're doing us a favor and theyare doing us a favor in some way.
This is last minute.
This conference is.
In a few weeks time.
I think it's at the end of endof May, but all of the main spots
are already taken at, so they'reshoehorning us in perhaps, or they're
(40:11):
putting us into a workshop position.
And that's not really thatvaluable to me because, and.
If I haven't been advertised in advance,there's not gonna be the audience.
So I either need a bigger audienceor I need to be compensated
(40:33):
for losing out my income.
Now, everything that getspaid goes to the charity.
Everything that.
Got paid that has been paid in the past,goes through the charity, but I often
have to put money into the charity tothen pay out my travel and expenses,
(40:56):
because the way I'm gonna do thingsis gonna do things comfortable to me.
So is there a number of figure?
No, I, I, I don't know one, but Idon't want to be taken for a ride.
Um, at this moment in time, if weare doing this for our publicity,
(41:18):
it has to at least compensate fornot earning in in my business.
So I pick a figure out the head, andI think if, if the maximum price for
a weekend in person is 499 poundsfor one candid, one, one delegate.
(41:40):
Then we have to be at leastat w, at worth at least one.
Delegate B we point.
Yeah.
In certain how much it is.
It's a lot more than a hundred.
A
hundred sounds pitance.
Anyway, and as you see,it's like last minute thing.
(42:00):
See the thing about all this, it's not,you know, doing a favor, et cetera.
It's, you know.
This isn't this, I mean thisis work, this is effort.
This is going out yourway for a couple of days.
This is big deal.
So I don't understand that approach.
It's like, you know, likethey're doing you favor or
not
they're giving you
(42:23):
an opportunity, butyou've provided something.
You're not there for a holiday.
You're not
there.
You know, there provide so.
Providing a service and providinginformation, providing education and
education from your experience, fromexperience of Autistic Radio and Autism
(42:43):
association, the charity, you know,
whether we want to talk aboutthat, it's very valuable itself.
Can I remind you, Harry, the nameof the charity of which you are, the
secretary is Autistic Associationand not Autism Association.
I thought I'd go here withit 'cause we're not live.
(43:05):
Yeah, I would remember that.
At least I didn't see our berger.
Yeah,
I think that made Lucy laugh 'cause I justsaw a, an image come up on the screen.
She'd accidentally touched her.
Um,
yeah, yeah.
That, that was meant to be key.
The mic on.
But you could see I wassmiling, so I agreed.
(43:25):
Your thing is autistic associationsis actually easier to say.
Yeah.
I mean, the purposeful thingwas to say we are autistic.
Our autistic association, I isn't justabout autism because autism generally
the neurotypical charity anyway.
(43:47):
The only people who haven'tgiven an opinion this.
Would be Nicola and Robbie, isit putting you on the spot to
say what you feel about this?
Because at the moment the voting, if wewere a democracy, the voting would be to,
to go along my lines and say no to this.
(44:08):
But that doesn't mean itisn't valuable to dissent,
quite honestly.
I would just abstain, like I reallydon't feel like informed or knowledge
knowledgeable enough to have like.
Worked out opinion on this.
I'm kind of gonna just sit on the fence
and cheer you on
(44:29):
now.
I would agree it's not enough
money for your time.
Would anybody else liketo do it in my place?
I've done it again to me, Cameron.
Yeah.
If I was nearer and I could get there andI had a little bit more time, I would.
Because,
you know, not something I wouldn't do.
(44:50):
I know for me at this particularthing, they'd have to up the money
a bit, think a hundreds a bit crap.
The thing about the hundred poundsis I find quite amusing, is because
you think, oh, give a hundred pounds.
That'll, that'll taste.
That'll be, it's a big number for this
particular person, thisparticular organization or group.
(45:10):
It's like.
Well, it's interesting.
We've heard about Lucy's thingreally successful, and we've heard
about this, thinking about it.
We just have to look forward tothe future and hope that we build a
(45:30):
bigger platform through artistic radiofor them to take us more seriously.
I suppose that's the only way forward.
Take us more seriously because they've,they've listened to what we do.
Again, can you explain tome who are they and why
are they so important?
PBS is the positive behavioralsupport, which is the up and coming
(45:56):
majority application to supportyoung people and autistic people.
It's paid for by government and by.
It's, it's the therapy for autisticpeople, which has the long-term history
(46:16):
of a behavior behind it, which is verycontroversial because certainly in
the past and to some extent now it's,it's been associated with conversion
therapy or difficult practices.
But at this moment in time, they,they're hoping to say that they've
disassociated themselves from.
(46:37):
Past practice that modernbehaviors have taken into account
the neurodiversity principle.
But there's large numbers of autisticpeople that are actually still protesting
against it because they do not believethat and they see it as a white watch.
So why it's important is, is to haveinfluence over whether, whether practices
(47:03):
that develop and continue to develop.
Including the autistic experiencein a more positive way than
has happened in the past.
So it's been autistic radio'sethos to try and be constructive
towards positive things rather thanjust being a protest organization.
(47:26):
Gotcha.
Thanks for that.
Just looking at the timethere, so won't expand.
Yeah, one hour doesn't last verylong for the drop in, but we've had
a great conversation and thank youfor the people who've texted there.
Let's join again for the drop in at 4
44 next week,
Thank you to all the people who havetexted, and also to the people who
(47:47):
have put their voices to this thatare gonna allow us to put some of
those words out into the podcast.
If you join us here at the 4,4, 4, your voice isn't recorded,
your text isn't recorded, but thepeople here have given permission
so that it's an example for others.
See you again.
Always reliably Sunday.
(48:10):
Four four, 4:00 PM Cheers, guys.
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