June 30, 2025 • 53 mins
Autie Unmasked
A 50 year old autistic woman and her neurodiverse brain tells her story.
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Jules
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AutisticRadio.com (00:00):
We speak our words, we listen, we speak our words, we listen.
(00:07):
We speak our words.
We listen.
We speak our words.
We listen.
Jules-AutisticRadio.com (00:20):
Now, we have one of our team, Lucy,
with a substack, AutiUnmasked.
I'm hoping that you're gonnaread something out for us,
Lucy, today to talk about.
Lucy-Dawson-Autie-Unmasked: Yep, absolutely. (00:38):
undefined
It's called This Week in Glitches.
This was a very early time for me.
Going out there and being partof a community I was only just
really coming to , this pointwhere I was able to go out and talk,
there is
something in the air this week,other than the whiff of the last
barbecues of a dying summer.
(01:00):
Everything has been going so well.
I've been surfing on a wave ofadrenaline, buoyed by all the
positive feedback I've had from myautism coming out to cyberspace.
It's been uniformly wonderful andtruly inspiring to know that my
previously candid ramblings areresonating so strongly with people.
(01:24):
I have been lucky enough to be invitedto be a guest on a few podcasts and to
write some articles, amazing opportunities, that I never thought would ever manifest.
I also gave a talk to a localsupport group in a communal cafe
where I spoke to many people who,like me, are finding ways to cope.
(01:47):
I learned about others on thespectrum who share a diagnosis.
But display very differentsymptoms and comorbidities.
Especially some mental health issues.
We spoke about the referralprocess and the wait time.
It's now elongated to years andyears rather than weeks or months.
And it seems to be true.
(02:09):
According to the latest NHS data,172, 022 people are waiting for
an autism assessment in England.
This is a 47 percent increase in thenumber of people waiting in just one year.
An almost unbelievable number,which makes me feel privileged and
fortunate to have come this far.
(02:29):
There are so, so, so manypeople still hanging in limbo.
One of the attendees at my informallecture had been waiting so long
that the anticipation has madethem question whether they are
even strong enough to go on.
Jules-AutisticRadio.com (02:44):
Wow, I mean that last bit, somebody is finding
getting diagnosed so difficultthat they're questioning whether
it's worth continuing the diagnosisprocess Well, it just says everything
about where we're at, doesn't it?
Lucy-Dawson-Autie-Unmasked: It was really sad to hear. (03:05):
undefined
This was quite a young lady who hadsome other complications as well.
A few health complicationsalongside, her diagnosis with autism.
She was quite introvert.
She didn't really like talking, but wesat and , we managed to get speaking
about it and she just felt that.
(03:26):
The longer she waited, the lessshe felt like she was going
to be able to go through it.
It's almost like the way that ifI'm going to have an appointment,
I want it early in the morning so Ican get it done and out of the way.
And because it was so far in the distanceand she was kind of galloping towards
it now and nearly there that she startedto doubt that she was going to be able
to be strong enough to go through it.
(03:47):
And you just wonder about these protractedwaits that people go through in order
to get their late diagnosis whetherthere is this tendency just to say,
look, you know, I am what I am and sortof back away from it because you're just
too frightened to take that last step.
Ray-AutisticRadio.com (04:03):
Was she offered an advocate at all?
Because I fear for people who get intothat situation and then can't communicate
their needs and therefore don't get whatthey're after, which is a diagnosis.
Lucy-Dawson-Autie-Unmasked (04:20):
Yes, , because of some of her other health
problems, she did have somebody who was.
Kind of social worker.
She did say that she lived inaccommodation where she was looked
after because of some of the thingsthat were alongside her autism.
, but I think it was just asimple fact that, , for me, I
got my diagnosis quite quickly.
(04:40):
But now it's starting to get to apoint where people are seeing it
as a far distant destination thatthey're having to jog towards, and
it's exhausting to think that you'regoing to get there at some point.
, she started to get stage fright becauseshe's overthought it, that's just
the time frame that they're lookingat now is too long for people, and
they kind of want to just say, no, notme, I'm not going to do that because
(05:03):
they're just scared of what it'sgoing to be like when they get there.
Ray-AutisticRadio.com (05:07):
Yeah, you can see why people want a self diagnose.
Lucy-Dawson-Autie-Unmasked: Well, this is it. (05:12):
undefined
You end up just self-diagnosisand never really getting it.
I didn't want to spend my life feelinglike I was not formally diagnosed.
I felt that this wassomething I needed to do.
I guess for some people they can justlive with that self-diagnosis, but it
does mean that there's no, it terrible.
Like you, you get kind of rubber stampedand say, you know, you, you, you are
(05:34):
with this crew now, and I guess ifyou, you stay undiagnosed, yes, you'll
find ways to support yourself, but.
some groups you may not findyourself, you know, allowed into.
Ray-AutisticRadio.com (05:48):
Yeah, it's like that sense of agency, isn't it?
Sometimes, when I was goingthrough it, I felt it was almost
fated, , things fell into place.
But there was a sense of agencythere too, because I was triggered
by what a friend had said.
And I thought maybe Ishould follow that path.
Lucy-Dawson-Autie-Unmasked (06:08):
I think maybe a lot of people go the way that
my process was a doctor , who broughtup the symptoms and sent me off to
go and, discover for myself and didit, did say, you know, it's time for
a referable as far as I'm concerned.
It had, it was a long road to get there,nobody picked it up before and God only
knows I've been in and out of mentalhealth services for years and been given
(06:31):
a diagnosis upon diagnosis upon diagnosis,which made me came away feeling weaker
and feeling like less able to cope withme because I was thinking, Oh, there's
something terribly wrong with me, buthaving that autism diagnosis actually made
me stronger because it was like, well,Okay, I know how to deal with this, but
yeah, I think everybody finds a path in,it's just how easy it is to get there
(06:56):
and have people around you who are goingto support you during the process as
well, , of getting a diagnosis, you haveto Have somebody have your back, almost,
you know, be behind you, saying it's fine,and pushing you towards that diagnosis.
I have to admit that this all feltlike an outer body experience.
(07:19):
Not near death, butcertainly near out of breath.
As if I was outside myself, floatingabove, observing me, not in the security
of an operating surgery laid out on atable, but standing exposed in a public
space, pouring my heart out to strangers.
Being scrutinized and eavesdroppedon by any normal patrons tucking
(07:40):
into the cake and coffee close by,I was loudly confiding and baring my
soul in a manner more conducive tolying on a couch and unloaded onto a
safely nodding therapist, rather thanshouting over the clutter of cutlery.
Ray-AutisticRadio.com: Wow, that description. (07:57):
undefined
The talking therapy.
Sometimes that's all we need
is just to talk it out.
Lucy-Dawson-Autie-Unmasked (08:04):
Yeah.
It was, it was a strange way to goI'm pouring my heart out to strangers.
I was getting lots of nods and, , sortof smiles and people understand
him,, once I got my diagnosis.
Things kind of stopped in terms ofsupport I was really, buoyed up
by my having my diagnosis and afterthat everything went quiet and I
(08:25):
thought, well, what do I do now?
What do I do now?
And having to then insert yourselfinto groups and mix with new people and
discuss it with other people like me.
It all had to be led by me then and findthings that I could do in order to kind
of get therapy through a group setting.
Ray-AutisticRadio.com (08:45):
Yeah, I've found out most of my issues goes back to a very
similar experience that you just describedbut when I was five years old at primary
school and it's that first time you standup and represent yourself in your voice
and in your being with other people.
Absolutely.
I, you know,
Lucy-Dawson-Autie-Unmasked (09:08):
I've been thinking back, I was thinking
back a couple of days ago aboutmy first experiences of school.
Those first few months in thatenvironment were so troubling to me I
can remember myself being a tot and beingin a classroom full of strangers and
just willing myself out there all thetime, wanting to get away from there.
(09:30):
I didn't understand how this should feel.
And the first year was a struggle for me.
I got better as I got older, but thefirst couple of years were a struggle.
Just to be there and to feel comfortablethere as something that I still find
very challenging if I'm going to bedoing something, if I'm going to be going
into a job and I've had loads of jobs.
It's really challenging to bethere and with those people and
(09:53):
try and kind of carve out somesort of relationship with them.
Jules-AutisticRadio.com (09:59):
There's another theme that's just popped in, and that is
about after your diagnosis, that you hadfound relatively easy to get hold of,
and you appreciate that now that door isclosed for a lot of people, it's really
difficult to get hold of that closure.
(10:20):
That diagnosis closure, youthen had to go and find other
spaces and other places yourself.
It seems to me that by far the majorityof autistic people, because of autism,
that thing that you did, findingother spaces, knocking on doors, and
(10:46):
often enough, feeling a littlebit rejected or daunted by those
doors, not everyone can do that.
And if people are going to support usGiving us a diagnosis, then leaving us
to our own devices is not good enough.
(11:08):
Giving us a diagnosis, and then givingus some kind of well put together
short course to explain autism toourselves, that's not good enough either.
What has to be done is tohave a third thing following,
(11:29):
and that is the networking.
Support a, a way for people who aren'tnaturally averse to networking and
making groups and joining things, makingit available to them in an easy way.
(11:53):
And for me, this whole thing abouthaving a diagnosis and then being dumped.
Having a course that explains thediagnosis, and then being dumped.
And then the next stage is, if theydo get it, if they do get some kind
(12:15):
of networking opportunities, then theproblem comes is how they are run well
enough for people who are autisticto manage to stay inside those groups
long enough to get benefit from them.
Because there's a dumping that happensinside those groups as well, an
internal rejection of autistic people.
(12:38):
It's, it's a three stage thing for me, andI'm not entirely sure that the diagnosis
itself is of any value for people when youconsider what's likely to happen after it.
It, it feels to me that people that startfrom the other way round, that manage to
(13:02):
get themselves held a wing around themfrom somebody else, and involved in a
group, you know, Might be doing it thebetter way around, getting some autistic
(13:22):
experience and support before going onto the flashcard explanation of autism,
and then before getting the diagnosis.
It seems to me as though we've gotit not only the wrong way around, but
We only go as a society to giving adiagnosis and dumping people mostly,
(13:49):
am I in tune with people here?
Lucy-Dawson-Autie-Unmasked: My experience, was, I worked (13:53):
undefined
really hard to get the diagnosis.
And then I got, I basically got sent,and this is all the support I got from
that, a photocopied batch of paper.
So, yeah.
Which was meant to really explainto me where I was at that moment
(14:19):
and what I could be doing.
And it was quite, you know, they weretrying to cover every base and, you
know, they obviously send this outto everybody after the, after they'd
done the test, they had sort of like,how do you keep yourself organized?
You know, are you any good at money?
Yeah.
But it felt.
It felt like nothing.
(14:40):
I've still got it because it's kindof laughable what they were saying
on there and it was, I found it thatit was, they were trying to, and I
know it's really difficult to makea publication for everybody, but it
was, it was so very basic that I waslike, no, just forget it now, but I
think people having to go and find.
(15:01):
Some means of support after a diagnosis isjust, it's difficult unless you can find
that within you, find the energy withinyou to keep going forward and find places.
Where you can sit and be part of agroup and even the group that I was next
sort of placed in was so very general.
(15:23):
It wasn't, it wasn'tfor people with autism.
It was people with all sorts ofdifferent things in their lives,
which made them alienated, whichmeant I'm going into a room where
I'm just, I'm not with my people.
, I suppose it depends and Ican see that everybody's.
It's saying in the, in the textthat that's probably more than
you got, but this is the problem.
(15:44):
There isn't much that goeson after a diagnosis at all.
Jules-AutisticRadio.com (15:49):
I feel as though we might be doing
this the wrong way around.
And that as diagnosis is so far offin the future, what people really need
is When they are questioning whetherthey might be autistic, they need a
community involvement with autisticpeople that might give them some sense
(16:13):
of certainty and support before they getanywhere near the textbook explanations
that come on the flashcards in, in thesupport services that people sometimes
run, and before the diagnosis itself.
It seems to me as though weshould be working towards a
diagnosis in the first place.
(16:34):
Rather than working from a diagnosis.
Ray-AutisticRadio.com (16:39):
Well, if there's nothing being offered,
really, you might as well act as if.
Lucy-Dawson-Autie-Unmasked (16:45):
It would be good if there were, like you say,
before you actually get your diagnosis,, more of a support coming up to that.
So that you know what you're goingto expect on the other side of this.
This is the thing.
You go into doing this thing, but it'spreparation being the best way of doing
this, so that you know that if you getto the other side of this, you'll have,
(17:05):
been set up to be able to cope and knowwhat it's going to be like Afterwards,
and know what, what you could doafterwards and that should start before
you go in for the, all the tests I hadweeks of psychology and stuff, before
I went into that, if I'd had a bit moreof a chat with somebody who could, you
(17:26):
could tell me what it would be likeon the other side of the diagnosis,
that would have been great, really.
Ray-AutisticRadio.com (17:32):
It's like, ask yourself, what would
you do if you got the diagnosis?
And then that leads to deeper questionslike, what do you actually want from
gaining this diagnosis and resolvingaspects of your life, yourself, like what
is the narrative that you're within here?
Lucy-Dawson-Autie-Unmasked (17:55):
It's a big question to ask what you want out of it.
I guess for me, it was just avalidation, like a medical validation
really, that I was like, okay.
, going down the rightpath I wanted to have.
I wanted my pain to have a name and, before that, for years I had been in
(18:19):
pain through mental health and throughbeing told that it's just a case of
take this pill and you'll be fine.
All of that had beenchurning in my background.
And it was horrible,years and years of it.
When I finally went, no, no, no,this is the road and I did it.
Just like all the pressure went.
(18:39):
I know now what I'm supposed to be doing.
I know now that I don't need tobe on 50 kinds of meds and being
told on a regular basis that I hadsome sort of personality disorder.
I didn't.
But that's what I'd been told overand over, so what I wanted to get
out of it, really, was to say, upyours, to all the people who had
(19:00):
said all these things to me before.
Ray-AutisticRadio.com (19:03):
Up yours, great.
Lucy-Dawson-Autie-Unmasked (19:06):
Because the mental health people were terrible.
, they were, ever since I was a kid.
And it just, nothing seemed to beright for me and they were pushing
me, I remember going to the doctorsand having to list every single type
of antidepressant and drug that I'dbeen on in the past because they were
running out of new ones to try on me.
(19:28):
I'm sorry, I'm getting angryabout it, but it's true.
It was like, they were going, well,okay, so what have you had in the past?
I'm saying I've had Prozac,I've had fluoxetine, I've
had, you know, metazapine.
And they're going, right, because we'renot really finding anything new we could
put you on that's going to be any better.
They were trying to give me stuff thatmade me drowsy, they were trying to give
me stuff that made me feel kind of likebetter during the day, but it was all
(19:51):
of this sort of guessing and I, I, I, Igot so medically involved with the idea
that there was something fundamentallywrong with my personality that it
made me feel less and less and less.
Ray-AutisticRadio.com (20:04):
Positive swearing.
I love when the bodytakes over from the mind.
Lucy-Dawson-Autie-Unmasked (20:10):
Yeah, I think, I guess I had a, it was, it's
like, you know, it's looking back andgoing, sodomo, really, it was, it was
a good place for me to be, because Ifelt, well, you know, I've been saying
for years, look, you're not helping me.
And there's been times where they'vedallied with, with kind of, at one
(20:32):
point they want to put me into shelteredhousing, this is many years ago, and
said maybe I need someone to look afterme, and I never felt that way, they
were going to do that for me becausethey just didn't know what else to do.
I'm quite able to run my life andto do my own shopping and all that.
I got a social worker who came to seeme who said she was going to take me out
(20:53):
for ice creams and walks in the park.
At one point.
And all these things I'm going, why?
I just don't need them.
Jules-AutisticRadio.com (21:02):
It's really interesting because you're the first
person who's really made a very goodcase for having a diagnosis first.
Because
a diagnosis of autism, for you,was an escape from misdiagnosis
of so many other things.
(21:22):
And I think that's very much a femaleperspective, more than a male perspective.
But it happens both ways.
And, so, in your case, you absolutelyneeded the up yours to all these labels
that people had With the best willpossibly tried to attach to you each
(21:43):
label had a different prescriptionthat went with the label and it's
all an experiment medicine is calledpractice because that's what it is.
Practice practice this andsee whether it works almost I
think the medicine that you.
Experienced was people experimentaland trying and trying with doses
(22:04):
and trying with labels for you.
That is the way it is.
So, it's the first time for me inyour case that somebody has said,
No, the diagnosis needs to be thestarting point for me because I need
to escape from all this misdiagnosis.
The other good thing that has come fromdiagnosis from people has been to do
(22:26):
with the benefit system or to do withinsurance companies, to do with things
that tick a box, diagnosis ticks a box.
It feels though that not everybodyneeds escape from misdiagnosis and
not everybody needs a ticker box.
And so I think for a percentage of ourpopulation, a, a softer, cheaper method
(22:56):
of dealing with us would be for thosepeople to have an introduction to the
idea of autism through autistic groups.
That then follow on to a muchmore formalized explanation that
then follow on to diagnosis andother people will be going the
opposite direction at the same time.
Lucy-Dawson-Autie-Unmasked (23:18):
It's probably not a case of one size fits all you
know, everybody talks about spectrum.
That's the problem is if you've gotsomething on a spectrum, then there is
no one size fits all solution to that.
It has to be really done with aone to one, , somebody talking to
somebody about it and being able totalk about the different fears , and,
(23:38):
or different feelings you're having.
And what your level of comprehensionof it is how you're going to process
that, it's just going to be sodifficult to be able to find a world
where everybody gets the introductionto their diagnosis that they need.
Oh, I'm all out of breath after that.
That was a very strong sort of, okay.
(24:02):
So it was an over, it was overwhelming.
The amount of knowledge and new experienceI took on board correlated exactly
with the energy it took out of me.
Okay.
I thank everyone for being sowelcoming and for taking time out
to speak to me and left hurriedly.
Back behind the safety of the frontdoor, I felt a very strong sense
(24:23):
that perhaps I'm not up to this,or deserving of these plaudits.
The only real purpose behindtalking about this condition openly
and frankly is the hope that itencourages others to do the same.
But inside, I started to wonderif I was really qualified
to speak on others behalf.
I'm in no way a scientist or psychologist.
(24:45):
All I really know is myself, whatdisorders hamper my life, and the
eccentricities of my thinking.
I've just been through four decadesdefying anyone, myself included, who
told me to just snap out of it becauseI instinctively knew that something
was off and there were missing pieces.
(25:05):
And now, after all the psychologicaltests, The weeks of assessment and the
final ADOS test, even if I still have theletter which confirmed my diagnosis, I
felt a sickening ache that I am in someway about to be called out as a fake.
And I guess that's really,I did, I did feel that way.
(25:27):
I've waited so long and now I'vegot it, and then I'm meeting other
autistic people and then I'm startingto feel , am I up to doing this now?
Should I be doing this now?
Do I have the, the right to be going outand talking to people , about diagnosis?
Ray-AutisticRadio.com (25:43):
Well, well, sorry, I couldn't speak there.
What bit of it feels fake?
I think I understand what you'resaying, and I'm trying to reflect
personally, like, I think I understandwhat you're saying, and I'm trying to
reflect personally, , Why I sometimesfeel fake, and I think it's because
I'm kind of dependent on that externalvalidation, and I've never trusted that.
It's like, unless I come upwith it, it's not really real.
Lucy-Dawson-Autie-Unmasked (26:06):
Yeah,
when I told a few people that Iwas autistic, and they told me.
I didn't seem, sound, act autistic.
, a touch of imposter syndrome, that thesense of being a fraudster, a trickster,
unworthy and incompetent, even withtangible evidence to the contrary, I
(26:28):
couldn't shake the nerves and the jitters.
And at that time I was sleepingreally badly and my head was
really spinning with it all.
Ray-AutisticRadio.com (26:37):
Uncertainty is difficult, but I think it's something
we need to embrace because If we canrelax into that and get , not a measure
of it, a dislike measure, you know, away of being with it, it can be quite
a positive thing, , because we areunwilling to accept all these givens.
(26:59):
But it puts you in a very fluid space,which is quite uncertain and a wee bit
nerve wracking, yeah, because we areall conditioned and used to looking
for that kind of solidity and security.
In fact, society is kindof addicted to security.
Lucy-Dawson-Autie-Unmasked (27:15):
I guess as well, the part of my feeling at that
time was that I had been through thetesting a it was a really long process
and I'm really surprised that otherpeople are saying that it was quite quick
for me, it was weeks and weeks.
I was going back every week for another,session of three quarters of an hour
chat about things and being asked toexplain how I lived my life to them.
(27:36):
So when I hear that people gotdiagnosed really quickly, I think,
wow, , by the end of it, I had togo for the ADOS test, it's called.
And, and I thought, well, maybe I was justgiven the answers they wanted to hear.
Yeah.
That was one of my insecurities was that.
Did I do this right?
Had I passed this exam on my ownmerits or did I cheat a little bit
in order to get this diagnosis?
(27:58):
That was how I was feeling.
Jules-AutisticRadio.com (28:01):
I find that telling about how the system
is and I think it's about moneyagain because the way you were
diagnosed Required an awful lot ofinput from an awful lot of different
people, some of whom quite serioussenior levels on high hourly rates.
(28:32):
And it feels to me as though what you wereput through was an overcomplicated system.
, I'll explain my situation, which wasto realize I was neurodiverse, and
A year later, have an appointmentwith a specialist psychiatrist
(28:55):
who was familiar with autism.
And during that one or one and a halfhour conversation, she was easily
able to determine and write a letterthat was not a tick box exercise, but
had relevant sentences in it whichrelated her experience of me In a
(29:20):
video call to the diagnostic criteria.
And that was absolutely sufficient.
One highly developed person witha good knowledge of autism and a
subject who had already got some kindof information on autism and knew
(29:41):
the things that they should mention.
It's an over complicatedprocess for a reason.
It's an over complicated process.
Mostly.
Because the status quo requirespeople to go through the different
(30:02):
channels and make sure everybody getsa bite of it and paid along the way.
Lucy-Dawson-Autie-Unmasked (30:09):
And it was.
Sorry, I, it was really complicated,you know, they wanted to speak to
my parents who were elderly at thetime and couldn't come all the way
to where I live to speak to them.
They wanted, they want to knowsomebody who knew you in childhood.
I know myself, what I was like inchildhood, really, because I remember it.
But , they wanted that.
I was doing things likemiming, making a cup of tea.
(30:32):
, they were just silly things.
And the actual test itself at the endfelt As if it was more attuned to a child,
I was looking at children's storybooksand being asked to read expressions
on the faces of the characters, orGiven little toy animals and cars
can you make a story out of this?
I'm there at 43 thinking, , no,because I'm not six anymore.
(30:52):
So many bits to it that I justthought, well, that seems a little bit.
Odd to ask me that at this age,when I'm pretty sure of myself
that I'm going down the right path.
Ray-AutisticRadio.com (31:04):
It sounds like a classic psychological test, sometimes
what they use for very young people too.
And it also sounds like how thetest was described to me in about
2018 19 when I was initiallythinking of putting in a request.
So then, Covid, andlockdown, and waiting lists.
(31:25):
Eventually, I was in shock when I gotthe letter saying turn up . By then,
it was similar to Jules, it was justthis, , almost a one hour conversation
with a psychiatrist or psychologist, sosomething changed there in the process.
Jules-AutisticRadio.com (31:42):
The racket I see, private consultations to give you
an autism diagnosis, whether you're achild or whether you're an adult, people
are now turning to these things, andthe more they can do, the more different
tests that they can do, that you canalready do yourself, you can find these
tests online anyway and go through themyourself, the more processes that they
(32:06):
have to pad their service out, Give itcredibility, and then charge for the
better as far as they're concerned.
This is a monetary scandal.
It's a rip off.
It can be justified in lots of differentways, but it's still a rip off.
(32:30):
And it's bad for society.
Lucy-Dawson-Autie-Unmasked (32:33):
I'm thinking maybe, it's got bigger
and bigger and bigger, this autismthing, this autism thing she says.
It's got so much bigger, peopleare starting to go down , that
road a lot more than others.
It's suddenly become a thing thatpeople self diagnose themselves
with and they don't mind payingout that money for the test
it should really be as simple as it was.
(32:54):
Just an hour long talk with somebodywho really knows what then what the
subject's about and then coming out theother end and going Yeah, that's it.
It's done and it was all done and nowwould have been perfect for me because
it was like something you would givea child and That's why in a way I felt
a little bit like I'm an imposter hereAnd because of the test was, I just
(33:17):
felt weird with it, you know, the whole,
the whole, you know, sort of, isthis person in this, this, this
picture book, what are they feeling?
And it was a little bit condescending, Ifelt, but maybe they were trying a one,
like a one size fits all diagnosis too.
Ray-AutisticRadio.com (33:38):
My takeaway very basically put is that in the very early
stages of development, there's somebreakdown in connection and communication.
And that sometimes that's whatthese tests are trying to.
We
Jules-AutisticRadio.com (33:54):
already have a number of different models to discover
people's autistic identity that don't relyon 1950s ideas about locked in syndrome,
refrigerator mothers, and autism being a
(34:17):
communication impossibility.
Which is almost how it is framed in themedical literature up until the 2000s.
And after the 2000s, there's somuch information out there that
(34:38):
could be adopted by the, theprofessions, that make everything
that you've experienced unnecessary.
I would say that what we experiencedhere in Scotland, Is a, is a move towards
that a single person making a sensibledecision from their own experience and
(34:59):
knowledge rather than these committeebased situations that sometimes happen.
It feels as though we are being usedas a group, as a disabled group, rather
than being supported in many quarters.
(35:22):
It feels as though we are.
Justification of people's servicesand wages more than we are a
valued member of the society thatneeds a little bit of support.
Changing that is a really big ask,but it is happening and it is going
(35:50):
to happen gradually over time.
More and more professionals are realizingthat these outdated models need retiring.
But my concern is that we have toget to the younger people in the
professions to reinforce their conceptsof Autism as a neurodevelopment or
(36:19):
a neurological difference ratherthan a neurodevelopment impairment.
That's the, that's the task.
Lucy-Dawson-Autie-Unmasked (36:33):
And in the workplace as well, for people to be
prepared for what they need to do tohelp to support somebody with autism.
I've worked in a lot ofdifferent jobs where.
I've only been there for a short whilebecause there's no place for me there,
and I didn't fit in , I couldn't get withthe beat of what's going on around me.
I was doing things in my own way, therehave been jobs where I've basically been
(36:58):
ejected from them because they said thatI'm not doing the right things, but nobody
ever really, Knows how to deal with a newmember of staff who comes out as autistic.
This is all my experience, I'm notgeneralizing, but some of the places I've
been, I've been really snippy about it.
You know, they don't, they didn'twant to make it comfortable for me.
(37:19):
They just wanted everything towork out so that I went by their
rules of danced to their rhythm.
.It's all right getting a diagnosis, but when you go out into the world and then
you start presenting yourself that topeople and being honest, I'm autistic
and I would like to join your company,but you need to do this, this and this.
You get ejected from that.
Ray-AutisticRadio.com: Yeah, everybody's insecure. (37:40):
undefined
. Jules-AutisticRadio.com: The last paragraph.
So, at that point I was
Lucy-Dawson-Autie-Unmasked (37:50):
sleeping badly, feeling rotten, and my head
was just spinning with everything.
I was so nervous about it all.
I said, but this feelingis not going to win.
Even if all I ever do is speak ofmy own experiences, then so be it.
Every day, for pretty much everyautistic person, it is a mental
battle to be part of the crowd, tocolour within the lines and conform.
(38:13):
Surely the work it takes to disguiseoneself makes impostors of us all.
, it's too late for me now.
After 40 years of introspection, I'm outthere, and I've thrown away my crayons.
Jules-AutisticRadio.com (38:26):
Is that a sense of relief at the end of the
day, that you've got through this,and now you're in a better place?
Lucy-Dawson-Autie-Unmasked (38:34):
My relationship with my diagnosis has
changed since I first got it to apoint now where I can sit and talk
about it and feel actually pretty okaywith it and feel that I'm, you know,
I'm, I'm part of a society of peoplewho, you know, they think differently
and have different ideas to mine,but, we can be out there and different
(38:56):
and weird and, and be proud of that.
Acceptance, self acceptance isso much better than having to
get that validation elsewhere.
And that's what I've always worked on.
I have said a number of times, Idon't need other people particularly.
If I have to, I'll sit in myown space and just do what I do.
(39:16):
I've, I've never, never sought outa crowd that I had to fit into.
I'd, I'd insert myself into placesand people just have to deal with it.
But there is, there is,now I do feel a relief.
It's nice.
To be able to be in a place now where,you know what, it's okay, , I can tell
people how it is, I can, and I won'ttry and, there's no mental battle
(39:39):
anymore, it is as it is, and I canpush myself forward, and do things
that are scary, and, and honestly,it feels great when you've done them.
Ray-AutisticRadio.com (39:50):
Do you think when you're in your personal
space that things come to you?
I've noticed when I switch off trying,there's a kind of serendipity that comes
in, things randomly kind of make sense.
(40:11):
I'm not trying to make sense of themand sometimes the best people I've
ever met and the best relationshipsI've had and involvements and
engagements have happened in that space.
I've not been out there actively trying,pressurising myself, getting all uptight
about it pressurising I've let it allgo, and then, wow, something turns up.
Jules-AutisticRadio.com (40:36):
Yeah, I have a bit of a sense of this.
When you're, when you're trying to selfdirect, when you're trying to create a
future, and say that it should be likethis, and I'm going to try and make it
like that, You've narrowed your focusto such a degree that you're more likely
(40:58):
to come against blank walls becauseyou've got a very specific thing in mind.
If you can get yourself to a positionwhere you're relaxed enough to be open
to notice the things around you andgo with the good things and find You
know, instead of seeking out, I mustgo to this party and I must meet a girl
(41:21):
to get to yourself a situation whereyou're wandering around your life and
you're more open and accepting thatthe, when a girl speaks to you, you're,
you're happy to speak back to them.
And.
It's in a situation that isn't pressuredand you're just being yourself.
That's when you're more likelyto strike up a relationship.
(41:45):
It's this trying too hard soyou're focused and you're unable
to notice what's around you.
Ray-AutisticRadio.com (41:54):
And of course it's easier said than done.
Sometimes what happens is people respondto You as you are, and we end up with
those relationships and people, likeif we're high energy or whatever, maybe
we attract high energy or the opposite.
It all depends on the balance.
(42:15):
I think, yeah, we're maybe agreeing ona freer kind of space with less self
involved, where it's not all about us.
But then that sounds a bit too judgmental.
Jules-AutisticRadio.com (42:25):
Well, for me, this comes back again to the.
You know, if we take the idea ofdiagnosis again and I put forward
the proposition that for some peoplefinding community first, then finding
explanations and then finding diagnosismight be the right way around.
And the reason I put that is because ifYou've got this idea that you might be
(42:50):
autistic and you hang out with autisticpeople a bit more, you're going to end
up with a serendipity of understandingand explanation by being open to being
around them and noticing difference andsimilarity, and that should give you
much more of a foundation of your ownconfidence when you are then confronted
(43:18):
with Some strong information that mightconflict with your identity a bit.
So, putting people in amongst otherautistic people feels to me like that's
where People get their quietness, theirconfidence, their ability to be in the
(43:40):
moment and get the best opportunitiesto, to understand and explore things
because they're not progressing on withthis single focus of getting a diagnosis.
Lucy-Dawson-Autie-Unmasked (43:56):
And also, having a diagnosis is not the end of
the line, it's not like you get thereand that's it, and that's the end,
and everything's where it should be.
It throws up a whole lot of newquestions in your head, where do I go
from here, and what do I do, and doI accept this or reject it, which is
something I did earlier on, you know,I didn't find that, I mean, some,
(44:22):
getting past that point, some peoplewere quite, Staunch that they didn't
think that I was autistic, people thatI knew and who were quite close to me.
So, from that point on, it's reallybeen having the courage to tell people
that, you know, you don't know whatautism looks like and I am autistic
(44:43):
and thank you very much and that's it.
It's the journey on from thediagnosis is, is, is a one that
you have to tackle as well.
Ray-AutisticRadio.com (44:52):
I haven't actually told anyone apart from services and GP
and
Jules-AutisticRadio.com: one autistic friend. (45:01):
undefined
Oh, and here.
Lucy-Dawson-Autie-Unmasked (45:07):
Which is fine.
, it really is, it's everybody's business,, everybody's personal business, what
they do, that, once that diagnosis isthere, who you tell and whether you
want to tell people is, is a choice.
And that's a big thing.
And everybody's got todo it their own way.
, I wanted to tell everybody becauseI just felt really like , I wanted
(45:31):
everybody to know that this, this iswhat I am, I still have some , social
life out there and I do have family.
So, I wanted to tell everybody, I wantedto put it to my chest and say , I've
got the medal now, and it's there, andit's mine, and this is what I am, and
now you all understand me better, orhope that you understand me better.
(45:53):
Not always the way.
Ray-AutisticRadio.com (45:56):
I'm thinking about, Captain Scarlet, that TV series,
they used to say, spectrum is green?
Lucy-Dawson-Autie-Unmasked: Yeah, I remember that. (46:04):
undefined
I like that.
Jules-AutisticRadio.com (46:08):
Kids programs of the 1970s and 60s.
This revealing your autism, I think, isa decision to make at every juncture.
And it's not something you canTake as a badge of honor that
yes, I'm entirely openly autistic.
(46:28):
I'm relatively well known in mysmall town and that means I have
had disputes and fights with quitea number of people disagreeing with
them and Lots of other people whoreally get me and understand me.
So I'm very Marmite, as far as people go.
(46:51):
, I tend not to emphasize my own autismwhen people have a negative idea of me.
Or, if I'm going into a new situationand I'm Angry and I've got to complain
in a shop or take the world on again.
I try not to have that associated withautism in any way because I feel as though
(47:13):
it's giving autistic people a bad namebecause, you know, my choices about going
around life is going to affect people
as far as open with people where it's alonger dialogue, a longer conversation,
or I am in a good mood and I'm happy tobe an advocate out there to strangers.
(47:36):
It, it just feels like alovely cool thing to be doing.
It's a positive freeing experience formyself to explain to a stranger who
says to me, Oh, you don't strike me asautistic and not be offended by that and
take that as a cue for then for me togo into my autistic radio advocacy mode.
(47:58):
And I enjoy that.
I enjoy that little bit of it.
It's you hand people the wordautism and they have got.
No fucking idea what to do with it.
You know, some people immediately go to,Oh, well that's kids that can't speak.
(48:20):
Or, other people will go to, Ah, Iseem to remember that terrorist said
that they were autism, autistic andtried to get off the death penalty, you
know, so some people have taken thatword and they're not going to easily
be changed in their ideas of autism,a bit like people who are openly gay.
(48:43):
You, you would be careful tosay to a bigot, yes, I'm gay,
but you would be more open withmembers of your family, you know?
Ray-AutisticRadio.com: Yeah, there can be baggage. (48:54):
undefined
, sometimes I feel, , I haven't told anyonebecause there's actually no one to tell.
But there's something you weresaying there about, oh God,
I've totally forgotten now.
I can't keep up.
Lucy-Dawson-Autie-Unmasked (49:10):
Okay, finally.
It's just a really stupid story, this,but, you know, I, I, I wear it on
the outside because You know, I, I,I look unusual to the outside, being,
you know, sort of shaven headed andDM booted all this sort of thing.
I went on holiday and this woman cameup to me and she looked me straight
in the face and went, Are you poorly?
(49:33):
And I said, What?
She said, Are you poorly?
Because she thought because I hadshort hair that I'd, you know,
gone through something very tough.
I said, No, I'm autistic.
She just didn't know how to react to it,she made an assumption about me from the
outside and I felt really, I felt reallyslighted by that, that was her definition
of me as a poorly person because, Iwasn't fitting in with my surrounds.
Ray-AutisticRadio.com (49:56):
Wow, not fitting in with your
surrounds.
Lucy-Dawson-Autie-Unmasked (50:01):
I was on a cruise ship, so I couldn't
get away from anybody, but yeah,I wasn't fitting in there at all.
I had a nice time, but everybody therewas of a certain kind and as soon as
you stick out as being unusual, somebodycomes over and asks you an incredibly,
incredibly rude question like that.
Wow, I can't believe you did that to me.
Ray-AutisticRadio.com (50:23):
Yeah, and what are they all about?
It's not like there's a dresscode on a cruise ship, is there?
I mean, this is the 21st century.
Some people are eccentric.
Little characters like that aren't there.
They're stuck in their ways.
Talk about, you know, notbeing part of the surrounds.
They're, like, totally embedded in it.
Lucy-Dawson-Autie-Unmasked (50:43):
It's no more than a floating hotel, dear.
We don't sit at the captain'stable , wearing our best frock.
The thing is, I felt so verybranded with this idea that there
was something deeply wrong with me.
Because I, I'm not doing whatthey're doing the bar and the
casino I just wanted to hangout and go to a few different
countries and get a bit of sunshine.
I just want to do what I do.
Ray-AutisticRadio.com (51:05):
She was probably jealous of your DMs.
Jules-AutisticRadio.com (51:11):
Autistic radio is about us, it's for us, and it's from us.
Autistic radio is about you, it'sfor you, and it can be from you.
We have, every single Sunday, drop in, 4.
(51:33):
44pm every Sunday.
That's not live, that's us gettingtogether, us talking, community.
Every Sunday, Harry leads a 5 5 5 p.
m.
A discussion around theFacebook page that he creates.
(51:54):
Involve yourself by suggestingwhat we should talk about next.
Share it with Harry.
And then, the bigger picture.
Advocate.
Use us.
Speak to the world, your project,your idea, your enthusiasm.
(52:17):
We have a whole range of differentprograms that will fit what you want.
As far as listening goes, there'ssome challenging stuff out there.
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals, challenging
(52:41):
their ideas, and bringing whatyou say in other spaces to them.
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
(53:01):
Autistic radio is very varied.
We need a favour.
To encourage us, we need you to share us.
When you share us, yougive autistic people power.
When you share us, you makeus impossible to ignore.
(53:25):
When you repost on LinkedIn and Facebookand anywhere else, you're advocating
for everybody in the autistic community.
So pick the things that you'rehappy with and get them out there.
So thank you.
Thank you, thank you.
Thank you, from all of us.
We speak our words, we listen, we speak our words, we listen.
(00:07):
We speak our words.
We listen.
We speak our words.
We listen.
Jules-AutisticRadio.com (00:20):
Now, we have one of our team, Lucy,
with a substack, AutiUnmasked.
I'm hoping that you're gonnaread something out for us,
Lucy, today to talk about.
Lucy-Dawson-Autie-Unmasked: Yep, absolutely. (00:38):
undefined
It's called This Week in Glitches.
This was a very early time for me.
Going out there and being partof a community I was only just
really coming to , this pointwhere I was able to go out and talk,
there is
something in the air this week,other than the whiff of the last
barbecues of a dying summer.
(01:00):
Everything has been going so well.
I've been surfing on a wave ofadrenaline, buoyed by all the
positive feedback I've had from myautism coming out to cyberspace.
It's been uniformly wonderful andtruly inspiring to know that my
previously candid ramblings areresonating so strongly with people.
(01:24):
I have been lucky enough to be invitedto be a guest on a few podcasts and to
write some articles, amazing opportunities, that I never thought would ever manifest.
I also gave a talk to a localsupport group in a communal cafe
where I spoke to many people who,like me, are finding ways to cope.
(01:47):
I learned about others on thespectrum who share a diagnosis.
But display very differentsymptoms and comorbidities.
Especially some mental health issues.
We spoke about the referralprocess and the wait time.
It's now elongated to years andyears rather than weeks or months.
And it seems to be true.
(02:09):
According to the latest NHS data,172, 022 people are waiting for
an autism assessment in England.
This is a 47 percent increase in thenumber of people waiting in just one year.
An almost unbelievable number,which makes me feel privileged and
fortunate to have come this far.
(02:29):
There are so, so, so manypeople still hanging in limbo.
One of the attendees at my informallecture had been waiting so long
that the anticipation has madethem question whether they are
even strong enough to go on.
Jules-AutisticRadio.com (02:44):
Wow, I mean that last bit, somebody is finding
getting diagnosed so difficultthat they're questioning whether
it's worth continuing the diagnosisprocess Well, it just says everything
about where we're at, doesn't it?
Lucy-Dawson-Autie-Unmasked: It was really sad to hear. (03:05):
undefined
This was quite a young lady who hadsome other complications as well.
A few health complicationsalongside, her diagnosis with autism.
She was quite introvert.
She didn't really like talking, but wesat and , we managed to get speaking
about it and she just felt that.
(03:26):
The longer she waited, the lessshe felt like she was going
to be able to go through it.
It's almost like the way that ifI'm going to have an appointment,
I want it early in the morning so Ican get it done and out of the way.
And because it was so far in the distanceand she was kind of galloping towards
it now and nearly there that she startedto doubt that she was going to be able
to be strong enough to go through it.
(03:47):
And you just wonder about these protractedwaits that people go through in order
to get their late diagnosis whetherthere is this tendency just to say,
look, you know, I am what I am and sortof back away from it because you're just
too frightened to take that last step.
Ray-AutisticRadio.com (04:03):
Was she offered an advocate at all?
Because I fear for people who get intothat situation and then can't communicate
their needs and therefore don't get whatthey're after, which is a diagnosis.
Lucy-Dawson-Autie-Unmasked (04:20):
Yes, , because of some of her other health
problems, she did have somebody who was.
Kind of social worker.
She did say that she lived inaccommodation where she was looked
after because of some of the thingsthat were alongside her autism.
, but I think it was just asimple fact that, , for me, I
got my diagnosis quite quickly.
(04:40):
But now it's starting to get to apoint where people are seeing it
as a far distant destination thatthey're having to jog towards, and
it's exhausting to think that you'regoing to get there at some point.
, she started to get stage fright becauseshe's overthought it, that's just
the time frame that they're lookingat now is too long for people, and
they kind of want to just say, no, notme, I'm not going to do that because
(05:03):
they're just scared of what it'sgoing to be like when they get there.
Ray-AutisticRadio.com (05:07):
Yeah, you can see why people want a self diagnose.
Lucy-Dawson-Autie-Unmasked: Well, this is it. (05:12):
undefined
You end up just self-diagnosisand never really getting it.
I didn't want to spend my life feelinglike I was not formally diagnosed.
I felt that this wassomething I needed to do.
I guess for some people they can justlive with that self-diagnosis, but it
does mean that there's no, it terrible.
Like you, you get kind of rubber stampedand say, you know, you, you, you are
(05:34):
with this crew now, and I guess ifyou, you stay undiagnosed, yes, you'll
find ways to support yourself, but.
some groups you may not findyourself, you know, allowed into.
Ray-AutisticRadio.com (05:48):
Yeah, it's like that sense of agency, isn't it?
Sometimes, when I was goingthrough it, I felt it was almost
fated, , things fell into place.
But there was a sense of agencythere too, because I was triggered
by what a friend had said.
And I thought maybe Ishould follow that path.
Lucy-Dawson-Autie-Unmasked (06:08):
I think maybe a lot of people go the way that
my process was a doctor , who broughtup the symptoms and sent me off to
go and, discover for myself and didit, did say, you know, it's time for
a referable as far as I'm concerned.
It had, it was a long road to get there,nobody picked it up before and God only
knows I've been in and out of mentalhealth services for years and been given
(06:31):
a diagnosis upon diagnosis upon diagnosis,which made me came away feeling weaker
and feeling like less able to cope withme because I was thinking, Oh, there's
something terribly wrong with me, buthaving that autism diagnosis actually made
me stronger because it was like, well,Okay, I know how to deal with this, but
yeah, I think everybody finds a path in,it's just how easy it is to get there
(06:56):
and have people around you who are goingto support you during the process as
well, , of getting a diagnosis, you haveto Have somebody have your back, almost,
you know, be behind you, saying it's fine,and pushing you towards that diagnosis.
I have to admit that this all feltlike an outer body experience.
(07:19):
Not near death, butcertainly near out of breath.
As if I was outside myself, floatingabove, observing me, not in the security
of an operating surgery laid out on atable, but standing exposed in a public
space, pouring my heart out to strangers.
Being scrutinized and eavesdroppedon by any normal patrons tucking
(07:40):
into the cake and coffee close by,I was loudly confiding and baring my
soul in a manner more conducive tolying on a couch and unloaded onto a
safely nodding therapist, rather thanshouting over the clutter of cutlery.
Ray-AutisticRadio.com: Wow, that description. (07:57):
undefined
The talking therapy.
Sometimes that's all we need
is just to talk it out.
Lucy-Dawson-Autie-Unmasked (08:04):
Yeah.
It was, it was a strange way to goI'm pouring my heart out to strangers.
I was getting lots of nods and, , sortof smiles and people understand
him,, once I got my diagnosis.
Things kind of stopped in terms ofsupport I was really, buoyed up
by my having my diagnosis and afterthat everything went quiet and I
(08:25):
thought, well, what do I do now?
What do I do now?
And having to then insert yourselfinto groups and mix with new people and
discuss it with other people like me.
It all had to be led by me then and findthings that I could do in order to kind
of get therapy through a group setting.
Ray-AutisticRadio.com (08:45):
Yeah, I've found out most of my issues goes back to a very
similar experience that you just describedbut when I was five years old at primary
school and it's that first time you standup and represent yourself in your voice
and in your being with other people.
Absolutely.
I, you know,
Lucy-Dawson-Autie-Unmasked (09:08):
I've been thinking back, I was thinking
back a couple of days ago aboutmy first experiences of school.
Those first few months in thatenvironment were so troubling to me I
can remember myself being a tot and beingin a classroom full of strangers and
just willing myself out there all thetime, wanting to get away from there.
(09:30):
I didn't understand how this should feel.
And the first year was a struggle for me.
I got better as I got older, but thefirst couple of years were a struggle.
Just to be there and to feel comfortablethere as something that I still find
very challenging if I'm going to bedoing something, if I'm going to be going
into a job and I've had loads of jobs.
It's really challenging to bethere and with those people and
(09:53):
try and kind of carve out somesort of relationship with them.
Jules-AutisticRadio.com (09:59):
There's another theme that's just popped in, and that is
about after your diagnosis, that you hadfound relatively easy to get hold of,
and you appreciate that now that door isclosed for a lot of people, it's really
difficult to get hold of that closure.
(10:20):
That diagnosis closure, youthen had to go and find other
spaces and other places yourself.
It seems to me that by far the majorityof autistic people, because of autism,
that thing that you did, findingother spaces, knocking on doors, and
(10:46):
often enough, feeling a littlebit rejected or daunted by those
doors, not everyone can do that.
And if people are going to support usGiving us a diagnosis, then leaving us
to our own devices is not good enough.
(11:08):
Giving us a diagnosis, and then givingus some kind of well put together
short course to explain autism toourselves, that's not good enough either.
What has to be done is tohave a third thing following,
(11:29):
and that is the networking.
Support a, a way for people who aren'tnaturally averse to networking and
making groups and joining things, makingit available to them in an easy way.
(11:53):
And for me, this whole thing abouthaving a diagnosis and then being dumped.
Having a course that explains thediagnosis, and then being dumped.
And then the next stage is, if theydo get it, if they do get some kind
(12:15):
of networking opportunities, then theproblem comes is how they are run well
enough for people who are autisticto manage to stay inside those groups
long enough to get benefit from them.
Because there's a dumping that happensinside those groups as well, an
internal rejection of autistic people.
(12:38):
It's, it's a three stage thing for me, andI'm not entirely sure that the diagnosis
itself is of any value for people when youconsider what's likely to happen after it.
It, it feels to me that people that startfrom the other way round, that manage to
(13:02):
get themselves held a wing around themfrom somebody else, and involved in a
group, you know, Might be doing it thebetter way around, getting some autistic
(13:22):
experience and support before going onto the flashcard explanation of autism,
and then before getting the diagnosis.
It seems to me as though we've gotit not only the wrong way around, but
We only go as a society to giving adiagnosis and dumping people mostly,
(13:49):
am I in tune with people here?
Lucy-Dawson-Autie-Unmasked: My experience, was, I worked (13:53):
undefined
really hard to get the diagnosis.
And then I got, I basically got sent,and this is all the support I got from
that, a photocopied batch of paper.
So, yeah.
Which was meant to really explainto me where I was at that moment
(14:19):
and what I could be doing.
And it was quite, you know, they weretrying to cover every base and, you
know, they obviously send this outto everybody after the, after they'd
done the test, they had sort of like,how do you keep yourself organized?
You know, are you any good at money?
Yeah.
But it felt.
It felt like nothing.
(14:40):
I've still got it because it's kindof laughable what they were saying
on there and it was, I found it thatit was, they were trying to, and I
know it's really difficult to makea publication for everybody, but it
was, it was so very basic that I waslike, no, just forget it now, but I
think people having to go and find.
(15:01):
Some means of support after a diagnosis isjust, it's difficult unless you can find
that within you, find the energy withinyou to keep going forward and find places.
Where you can sit and be part of agroup and even the group that I was next
sort of placed in was so very general.
(15:23):
It wasn't, it wasn'tfor people with autism.
It was people with all sorts ofdifferent things in their lives,
which made them alienated, whichmeant I'm going into a room where
I'm just, I'm not with my people.
, I suppose it depends and Ican see that everybody's.
It's saying in the, in the textthat that's probably more than
you got, but this is the problem.
(15:44):
There isn't much that goeson after a diagnosis at all.
Jules-AutisticRadio.com (15:49):
I feel as though we might be doing
this the wrong way around.
And that as diagnosis is so far offin the future, what people really need
is When they are questioning whetherthey might be autistic, they need a
community involvement with autisticpeople that might give them some sense
(16:13):
of certainty and support before they getanywhere near the textbook explanations
that come on the flashcards in, in thesupport services that people sometimes
run, and before the diagnosis itself.
It seems to me as though weshould be working towards a
diagnosis in the first place.
(16:34):
Rather than working from a diagnosis.
Ray-AutisticRadio.com (16:39):
Well, if there's nothing being offered,
really, you might as well act as if.
Lucy-Dawson-Autie-Unmasked (16:45):
It would be good if there were, like you say,
before you actually get your diagnosis,, more of a support coming up to that.
So that you know what you're goingto expect on the other side of this.
This is the thing.
You go into doing this thing, but it'spreparation being the best way of doing
this, so that you know that if you getto the other side of this, you'll have,
(17:05):
been set up to be able to cope and knowwhat it's going to be like Afterwards,
and know what, what you could doafterwards and that should start before
you go in for the, all the tests I hadweeks of psychology and stuff, before
I went into that, if I'd had a bit moreof a chat with somebody who could, you
(17:26):
could tell me what it would be likeon the other side of the diagnosis,
that would have been great, really.
Ray-AutisticRadio.com (17:32):
It's like, ask yourself, what would
you do if you got the diagnosis?
And then that leads to deeper questionslike, what do you actually want from
gaining this diagnosis and resolvingaspects of your life, yourself, like what
is the narrative that you're within here?
Lucy-Dawson-Autie-Unmasked (17:55):
It's a big question to ask what you want out of it.
I guess for me, it was just avalidation, like a medical validation
really, that I was like, okay.
, going down the rightpath I wanted to have.
I wanted my pain to have a name and, before that, for years I had been in
(18:19):
pain through mental health and throughbeing told that it's just a case of
take this pill and you'll be fine.
All of that had beenchurning in my background.
And it was horrible,years and years of it.
When I finally went, no, no, no,this is the road and I did it.
Just like all the pressure went.
(18:39):
I know now what I'm supposed to be doing.
I know now that I don't need tobe on 50 kinds of meds and being
told on a regular basis that I hadsome sort of personality disorder.
I didn't.
But that's what I'd been told overand over, so what I wanted to get
out of it, really, was to say, upyours, to all the people who had
(19:00):
said all these things to me before.
Ray-AutisticRadio.com (19:03):
Up yours, great.
Lucy-Dawson-Autie-Unmasked (19:06):
Because the mental health people were terrible.
, they were, ever since I was a kid.
And it just, nothing seemed to beright for me and they were pushing
me, I remember going to the doctorsand having to list every single type
of antidepressant and drug that I'dbeen on in the past because they were
running out of new ones to try on me.
(19:28):
I'm sorry, I'm getting angryabout it, but it's true.
It was like, they were going, well,okay, so what have you had in the past?
I'm saying I've had Prozac,I've had fluoxetine, I've
had, you know, metazapine.
And they're going, right, because we'renot really finding anything new we could
put you on that's going to be any better.
They were trying to give me stuff thatmade me drowsy, they were trying to give
me stuff that made me feel kind of likebetter during the day, but it was all
(19:51):
of this sort of guessing and I, I, I, Igot so medically involved with the idea
that there was something fundamentallywrong with my personality that it
made me feel less and less and less.
Ray-AutisticRadio.com (20:04):
Positive swearing.
I love when the bodytakes over from the mind.
Lucy-Dawson-Autie-Unmasked (20:10):
Yeah, I think, I guess I had a, it was, it's
like, you know, it's looking back andgoing, sodomo, really, it was, it was
a good place for me to be, because Ifelt, well, you know, I've been saying
for years, look, you're not helping me.
And there's been times where they'vedallied with, with kind of, at one
(20:32):
point they want to put me into shelteredhousing, this is many years ago, and
said maybe I need someone to look afterme, and I never felt that way, they
were going to do that for me becausethey just didn't know what else to do.
I'm quite able to run my life andto do my own shopping and all that.
I got a social worker who came to seeme who said she was going to take me out
(20:53):
for ice creams and walks in the park.
At one point.
And all these things I'm going, why?
I just don't need them.
Jules-AutisticRadio.com (21:02):
It's really interesting because you're the first
person who's really made a very goodcase for having a diagnosis first.
Because
a diagnosis of autism, for you,was an escape from misdiagnosis
of so many other things.
(21:22):
And I think that's very much a femaleperspective, more than a male perspective.
But it happens both ways.
And, so, in your case, you absolutelyneeded the up yours to all these labels
that people had With the best willpossibly tried to attach to you each
(21:43):
label had a different prescriptionthat went with the label and it's
all an experiment medicine is calledpractice because that's what it is.
Practice practice this andsee whether it works almost I
think the medicine that you.
Experienced was people experimentaland trying and trying with doses
(22:04):
and trying with labels for you.
That is the way it is.
So, it's the first time for me inyour case that somebody has said,
No, the diagnosis needs to be thestarting point for me because I need
to escape from all this misdiagnosis.
The other good thing that has come fromdiagnosis from people has been to do
(22:26):
with the benefit system or to do withinsurance companies, to do with things
that tick a box, diagnosis ticks a box.
It feels though that not everybodyneeds escape from misdiagnosis and
not everybody needs a ticker box.
And so I think for a percentage of ourpopulation, a, a softer, cheaper method
(22:56):
of dealing with us would be for thosepeople to have an introduction to the
idea of autism through autistic groups.
That then follow on to a muchmore formalized explanation that
then follow on to diagnosis andother people will be going the
opposite direction at the same time.
Lucy-Dawson-Autie-Unmasked (23:18):
It's probably not a case of one size fits all you
know, everybody talks about spectrum.
That's the problem is if you've gotsomething on a spectrum, then there is
no one size fits all solution to that.
It has to be really done with aone to one, , somebody talking to
somebody about it and being able totalk about the different fears , and,
(23:38):
or different feelings you're having.
And what your level of comprehensionof it is how you're going to process
that, it's just going to be sodifficult to be able to find a world
where everybody gets the introductionto their diagnosis that they need.
Oh, I'm all out of breath after that.
That was a very strong sort of, okay.
(24:02):
So it was an over, it was overwhelming.
The amount of knowledge and new experienceI took on board correlated exactly
with the energy it took out of me.
Okay.
I thank everyone for being sowelcoming and for taking time out
to speak to me and left hurriedly.
Back behind the safety of the frontdoor, I felt a very strong sense
(24:23):
that perhaps I'm not up to this,or deserving of these plaudits.
The only real purpose behindtalking about this condition openly
and frankly is the hope that itencourages others to do the same.
But inside, I started to wonderif I was really qualified
to speak on others behalf.
I'm in no way a scientist or psychologist.
(24:45):
All I really know is myself, whatdisorders hamper my life, and the
eccentricities of my thinking.
I've just been through four decadesdefying anyone, myself included, who
told me to just snap out of it becauseI instinctively knew that something
was off and there were missing pieces.
(25:05):
And now, after all the psychologicaltests, The weeks of assessment and the
final ADOS test, even if I still have theletter which confirmed my diagnosis, I
felt a sickening ache that I am in someway about to be called out as a fake.
And I guess that's really,I did, I did feel that way.
(25:27):
I've waited so long and now I'vegot it, and then I'm meeting other
autistic people and then I'm startingto feel , am I up to doing this now?
Should I be doing this now?
Do I have the, the right to be going outand talking to people , about diagnosis?
Ray-AutisticRadio.com (25:43):
Well, well, sorry, I couldn't speak there.
What bit of it feels fake?
I think I understand what you'resaying, and I'm trying to reflect
personally, like, I think I understandwhat you're saying, and I'm trying to
reflect personally, , Why I sometimesfeel fake, and I think it's because
I'm kind of dependent on that externalvalidation, and I've never trusted that.
It's like, unless I come upwith it, it's not really real.
Lucy-Dawson-Autie-Unmasked (26:06):
Yeah,
when I told a few people that Iwas autistic, and they told me.
I didn't seem, sound, act autistic.
, a touch of imposter syndrome, that thesense of being a fraudster, a trickster,
unworthy and incompetent, even withtangible evidence to the contrary, I
(26:28):
couldn't shake the nerves and the jitters.
And at that time I was sleepingreally badly and my head was
really spinning with it all.
Ray-AutisticRadio.com (26:37):
Uncertainty is difficult, but I think it's something
we need to embrace because If we canrelax into that and get , not a measure
of it, a dislike measure, you know, away of being with it, it can be quite
a positive thing, , because we areunwilling to accept all these givens.
(26:59):
But it puts you in a very fluid space,which is quite uncertain and a wee bit
nerve wracking, yeah, because we areall conditioned and used to looking
for that kind of solidity and security.
In fact, society is kindof addicted to security.
Lucy-Dawson-Autie-Unmasked (27:15):
I guess as well, the part of my feeling at that
time was that I had been through thetesting a it was a really long process
and I'm really surprised that otherpeople are saying that it was quite quick
for me, it was weeks and weeks.
I was going back every week for another,session of three quarters of an hour
chat about things and being asked toexplain how I lived my life to them.
(27:36):
So when I hear that people gotdiagnosed really quickly, I think,
wow, , by the end of it, I had togo for the ADOS test, it's called.
And, and I thought, well, maybe I was justgiven the answers they wanted to hear.
Yeah.
That was one of my insecurities was that.
Did I do this right?
Had I passed this exam on my ownmerits or did I cheat a little bit
in order to get this diagnosis?
(27:58):
That was how I was feeling.
Jules-AutisticRadio.com (28:01):
I find that telling about how the system
is and I think it's about moneyagain because the way you were
diagnosed Required an awful lot ofinput from an awful lot of different
people, some of whom quite serioussenior levels on high hourly rates.
(28:32):
And it feels to me as though what you wereput through was an overcomplicated system.
, I'll explain my situation, which wasto realize I was neurodiverse, and
A year later, have an appointmentwith a specialist psychiatrist
(28:55):
who was familiar with autism.
And during that one or one and a halfhour conversation, she was easily
able to determine and write a letterthat was not a tick box exercise, but
had relevant sentences in it whichrelated her experience of me In a
(29:20):
video call to the diagnostic criteria.
And that was absolutely sufficient.
One highly developed person witha good knowledge of autism and a
subject who had already got some kindof information on autism and knew
(29:41):
the things that they should mention.
It's an over complicatedprocess for a reason.
It's an over complicated process.
Mostly.
Because the status quo requirespeople to go through the different
(30:02):
channels and make sure everybody getsa bite of it and paid along the way.
Lucy-Dawson-Autie-Unmasked (30:09):
And it was.
Sorry, I, it was really complicated,you know, they wanted to speak to
my parents who were elderly at thetime and couldn't come all the way
to where I live to speak to them.
They wanted, they want to knowsomebody who knew you in childhood.
I know myself, what I was like inchildhood, really, because I remember it.
But , they wanted that.
I was doing things likemiming, making a cup of tea.
(30:32):
, they were just silly things.
And the actual test itself at the endfelt As if it was more attuned to a child,
I was looking at children's storybooksand being asked to read expressions
on the faces of the characters, orGiven little toy animals and cars
can you make a story out of this?
I'm there at 43 thinking, , no,because I'm not six anymore.
(30:52):
So many bits to it that I justthought, well, that seems a little bit.
Odd to ask me that at this age,when I'm pretty sure of myself
that I'm going down the right path.
Ray-AutisticRadio.com (31:04):
It sounds like a classic psychological test, sometimes
what they use for very young people too.
And it also sounds like how thetest was described to me in about
2018 19 when I was initiallythinking of putting in a request.
So then, Covid, andlockdown, and waiting lists.
(31:25):
Eventually, I was in shock when I gotthe letter saying turn up . By then,
it was similar to Jules, it was justthis, , almost a one hour conversation
with a psychiatrist or psychologist, sosomething changed there in the process.
Jules-AutisticRadio.com (31:42):
The racket I see, private consultations to give you
an autism diagnosis, whether you're achild or whether you're an adult, people
are now turning to these things, andthe more they can do, the more different
tests that they can do, that you canalready do yourself, you can find these
tests online anyway and go through themyourself, the more processes that they
(32:06):
have to pad their service out, Give itcredibility, and then charge for the
better as far as they're concerned.
This is a monetary scandal.
It's a rip off.
It can be justified in lots of differentways, but it's still a rip off.
(32:30):
And it's bad for society.
Lucy-Dawson-Autie-Unmasked (32:33):
I'm thinking maybe, it's got bigger
and bigger and bigger, this autismthing, this autism thing she says.
It's got so much bigger, peopleare starting to go down , that
road a lot more than others.
It's suddenly become a thing thatpeople self diagnose themselves
with and they don't mind payingout that money for the test
it should really be as simple as it was.
(32:54):
Just an hour long talk with somebodywho really knows what then what the
subject's about and then coming out theother end and going Yeah, that's it.
It's done and it was all done and nowwould have been perfect for me because
it was like something you would givea child and That's why in a way I felt
a little bit like I'm an imposter hereAnd because of the test was, I just
(33:17):
felt weird with it, you know, the whole,
the whole, you know, sort of, isthis person in this, this, this
picture book, what are they feeling?
And it was a little bit condescending, Ifelt, but maybe they were trying a one,
like a one size fits all diagnosis too.
Ray-AutisticRadio.com (33:38):
My takeaway very basically put is that in the very early
stages of development, there's somebreakdown in connection and communication.
And that sometimes that's whatthese tests are trying to.
We
Jules-AutisticRadio.com (33:54):
already have a number of different models to discover
people's autistic identity that don't relyon 1950s ideas about locked in syndrome,
refrigerator mothers, and autism being a
(34:17):
communication impossibility.
Which is almost how it is framed in themedical literature up until the 2000s.
And after the 2000s, there's somuch information out there that
(34:38):
could be adopted by the, theprofessions, that make everything
that you've experienced unnecessary.
I would say that what we experiencedhere in Scotland, Is a, is a move towards
that a single person making a sensibledecision from their own experience and
(34:59):
knowledge rather than these committeebased situations that sometimes happen.
It feels as though we are being usedas a group, as a disabled group, rather
than being supported in many quarters.
(35:22):
It feels as though we are.
Justification of people's servicesand wages more than we are a
valued member of the society thatneeds a little bit of support.
Changing that is a really big ask,but it is happening and it is going
(35:50):
to happen gradually over time.
More and more professionals are realizingthat these outdated models need retiring.
But my concern is that we have toget to the younger people in the
professions to reinforce their conceptsof Autism as a neurodevelopment or
(36:19):
a neurological difference ratherthan a neurodevelopment impairment.
That's the, that's the task.
Lucy-Dawson-Autie-Unmasked (36:33):
And in the workplace as well, for people to be
prepared for what they need to do tohelp to support somebody with autism.
I've worked in a lot ofdifferent jobs where.
I've only been there for a short whilebecause there's no place for me there,
and I didn't fit in , I couldn't get withthe beat of what's going on around me.
I was doing things in my own way, therehave been jobs where I've basically been
(36:58):
ejected from them because they said thatI'm not doing the right things, but nobody
ever really, Knows how to deal with a newmember of staff who comes out as autistic.
This is all my experience, I'm notgeneralizing, but some of the places I've
been, I've been really snippy about it.
You know, they don't, they didn'twant to make it comfortable for me.
(37:19):
They just wanted everything towork out so that I went by their
rules of danced to their rhythm.
.It's all right getting a diagnosis, but when you go out into the world and then
you start presenting yourself that topeople and being honest, I'm autistic
and I would like to join your company,but you need to do this, this and this.
You get ejected from that.
Ray-AutisticRadio.com: Yeah, everybody's insecure. (37:40):
undefined
. Jules-AutisticRadio.com: The last paragraph.
So, at that point I was
Lucy-Dawson-Autie-Unmasked (37:50):
sleeping badly, feeling rotten, and my head
was just spinning with everything.
I was so nervous about it all.
I said, but this feelingis not going to win.
Even if all I ever do is speak ofmy own experiences, then so be it.
Every day, for pretty much everyautistic person, it is a mental
battle to be part of the crowd, tocolour within the lines and conform.
(38:13):
Surely the work it takes to disguiseoneself makes impostors of us all.
, it's too late for me now.
After 40 years of introspection, I'm outthere, and I've thrown away my crayons.
Jules-AutisticRadio.com (38:26):
Is that a sense of relief at the end of the
day, that you've got through this,and now you're in a better place?
Lucy-Dawson-Autie-Unmasked (38:34):
My relationship with my diagnosis has
changed since I first got it to apoint now where I can sit and talk
about it and feel actually pretty okaywith it and feel that I'm, you know,
I'm, I'm part of a society of peoplewho, you know, they think differently
and have different ideas to mine,but, we can be out there and different
(38:56):
and weird and, and be proud of that.
Acceptance, self acceptance isso much better than having to
get that validation elsewhere.
And that's what I've always worked on.
I have said a number of times, Idon't need other people particularly.
If I have to, I'll sit in myown space and just do what I do.
(39:16):
I've, I've never, never sought outa crowd that I had to fit into.
I'd, I'd insert myself into placesand people just have to deal with it.
But there is, there is,now I do feel a relief.
It's nice.
To be able to be in a place now where,you know what, it's okay, , I can tell
people how it is, I can, and I won'ttry and, there's no mental battle
(39:39):
anymore, it is as it is, and I canpush myself forward, and do things
that are scary, and, and honestly,it feels great when you've done them.
Ray-AutisticRadio.com (39:50):
Do you think when you're in your personal
space that things come to you?
I've noticed when I switch off trying,there's a kind of serendipity that comes
in, things randomly kind of make sense.
(40:11):
I'm not trying to make sense of themand sometimes the best people I've
ever met and the best relationshipsI've had and involvements and
engagements have happened in that space.
I've not been out there actively trying,pressurising myself, getting all uptight
about it pressurising I've let it allgo, and then, wow, something turns up.
Jules-AutisticRadio.com (40:36):
Yeah, I have a bit of a sense of this.
When you're, when you're trying to selfdirect, when you're trying to create a
future, and say that it should be likethis, and I'm going to try and make it
like that, You've narrowed your focusto such a degree that you're more likely
(40:58):
to come against blank walls becauseyou've got a very specific thing in mind.
If you can get yourself to a positionwhere you're relaxed enough to be open
to notice the things around you andgo with the good things and find You
know, instead of seeking out, I mustgo to this party and I must meet a girl
(41:21):
to get to yourself a situation whereyou're wandering around your life and
you're more open and accepting thatthe, when a girl speaks to you, you're,
you're happy to speak back to them.
And.
It's in a situation that isn't pressuredand you're just being yourself.
That's when you're more likelyto strike up a relationship.
(41:45):
It's this trying too hard soyou're focused and you're unable
to notice what's around you.
Ray-AutisticRadio.com (41:54):
And of course it's easier said than done.
Sometimes what happens is people respondto You as you are, and we end up with
those relationships and people, likeif we're high energy or whatever, maybe
we attract high energy or the opposite.
It all depends on the balance.
(42:15):
I think, yeah, we're maybe agreeing ona freer kind of space with less self
involved, where it's not all about us.
But then that sounds a bit too judgmental.
Jules-AutisticRadio.com (42:25):
Well, for me, this comes back again to the.
You know, if we take the idea ofdiagnosis again and I put forward
the proposition that for some peoplefinding community first, then finding
explanations and then finding diagnosismight be the right way around.
And the reason I put that is because ifYou've got this idea that you might be
(42:50):
autistic and you hang out with autisticpeople a bit more, you're going to end
up with a serendipity of understandingand explanation by being open to being
around them and noticing difference andsimilarity, and that should give you
much more of a foundation of your ownconfidence when you are then confronted
(43:18):
with Some strong information that mightconflict with your identity a bit.
So, putting people in amongst otherautistic people feels to me like that's
where People get their quietness, theirconfidence, their ability to be in the
(43:40):
moment and get the best opportunitiesto, to understand and explore things
because they're not progressing on withthis single focus of getting a diagnosis.
Lucy-Dawson-Autie-Unmasked (43:56):
And also, having a diagnosis is not the end of
the line, it's not like you get thereand that's it, and that's the end,
and everything's where it should be.
It throws up a whole lot of newquestions in your head, where do I go
from here, and what do I do, and doI accept this or reject it, which is
something I did earlier on, you know,I didn't find that, I mean, some,
(44:22):
getting past that point, some peoplewere quite, Staunch that they didn't
think that I was autistic, people thatI knew and who were quite close to me.
So, from that point on, it's reallybeen having the courage to tell people
that, you know, you don't know whatautism looks like and I am autistic
(44:43):
and thank you very much and that's it.
It's the journey on from thediagnosis is, is, is a one that
you have to tackle as well.
Ray-AutisticRadio.com (44:52):
I haven't actually told anyone apart from services and GP
and
Jules-AutisticRadio.com: one autistic friend. (45:01):
undefined
Oh, and here.
Lucy-Dawson-Autie-Unmasked (45:07):
Which is fine.
, it really is, it's everybody's business,, everybody's personal business, what
they do, that, once that diagnosis isthere, who you tell and whether you
want to tell people is, is a choice.
And that's a big thing.
And everybody's got todo it their own way.
, I wanted to tell everybody becauseI just felt really like , I wanted
(45:31):
everybody to know that this, this iswhat I am, I still have some , social
life out there and I do have family.
So, I wanted to tell everybody, I wantedto put it to my chest and say , I've
got the medal now, and it's there, andit's mine, and this is what I am, and
now you all understand me better, orhope that you understand me better.
(45:53):
Not always the way.
Ray-AutisticRadio.com (45:56):
I'm thinking about, Captain Scarlet, that TV series,
they used to say, spectrum is green?
Lucy-Dawson-Autie-Unmasked: Yeah, I remember that. (46:04):
undefined
I like that.
Jules-AutisticRadio.com (46:08):
Kids programs of the 1970s and 60s.
This revealing your autism, I think, isa decision to make at every juncture.
And it's not something you canTake as a badge of honor that
yes, I'm entirely openly autistic.
(46:28):
I'm relatively well known in mysmall town and that means I have
had disputes and fights with quitea number of people disagreeing with
them and Lots of other people whoreally get me and understand me.
So I'm very Marmite, as far as people go.
(46:51):
, I tend not to emphasize my own autismwhen people have a negative idea of me.
Or, if I'm going into a new situationand I'm Angry and I've got to complain
in a shop or take the world on again.
I try not to have that associated withautism in any way because I feel as though
(47:13):
it's giving autistic people a bad namebecause, you know, my choices about going
around life is going to affect people
as far as open with people where it's alonger dialogue, a longer conversation,
or I am in a good mood and I'm happy tobe an advocate out there to strangers.
(47:36):
It, it just feels like alovely cool thing to be doing.
It's a positive freeing experience formyself to explain to a stranger who
says to me, Oh, you don't strike me asautistic and not be offended by that and
take that as a cue for then for me togo into my autistic radio advocacy mode.
(47:58):
And I enjoy that.
I enjoy that little bit of it.
It's you hand people the wordautism and they have got.
No fucking idea what to do with it.
You know, some people immediately go to,Oh, well that's kids that can't speak.
(48:20):
Or, other people will go to, Ah, Iseem to remember that terrorist said
that they were autism, autistic andtried to get off the death penalty, you
know, so some people have taken thatword and they're not going to easily
be changed in their ideas of autism,a bit like people who are openly gay.
(48:43):
You, you would be careful tosay to a bigot, yes, I'm gay,
but you would be more open withmembers of your family, you know?
Ray-AutisticRadio.com: Yeah, there can be baggage. (48:54):
undefined
, sometimes I feel, , I haven't told anyonebecause there's actually no one to tell.
But there's something you weresaying there about, oh God,
I've totally forgotten now.
I can't keep up.
Lucy-Dawson-Autie-Unmasked (49:10):
Okay, finally.
It's just a really stupid story, this,but, you know, I, I, I wear it on
the outside because You know, I, I,I look unusual to the outside, being,
you know, sort of shaven headed andDM booted all this sort of thing.
I went on holiday and this woman cameup to me and she looked me straight
in the face and went, Are you poorly?
(49:33):
And I said, What?
She said, Are you poorly?
Because she thought because I hadshort hair that I'd, you know,
gone through something very tough.
I said, No, I'm autistic.
She just didn't know how to react to it,she made an assumption about me from the
outside and I felt really, I felt reallyslighted by that, that was her definition
of me as a poorly person because, Iwasn't fitting in with my surrounds.
Ray-AutisticRadio.com (49:56):
Wow, not fitting in with your
surrounds.
Lucy-Dawson-Autie-Unmasked (50:01):
I was on a cruise ship, so I couldn't
get away from anybody, but yeah,I wasn't fitting in there at all.
I had a nice time, but everybody therewas of a certain kind and as soon as
you stick out as being unusual, somebodycomes over and asks you an incredibly,
incredibly rude question like that.
Wow, I can't believe you did that to me.
Ray-AutisticRadio.com (50:23):
Yeah, and what are they all about?
It's not like there's a dresscode on a cruise ship, is there?
I mean, this is the 21st century.
Some people are eccentric.
Little characters like that aren't there.
They're stuck in their ways.
Talk about, you know, notbeing part of the surrounds.
They're, like, totally embedded in it.
Lucy-Dawson-Autie-Unmasked (50:43):
It's no more than a floating hotel, dear.
We don't sit at the captain'stable , wearing our best frock.
The thing is, I felt so verybranded with this idea that there
was something deeply wrong with me.
Because I, I'm not doing whatthey're doing the bar and the
casino I just wanted to hangout and go to a few different
countries and get a bit of sunshine.
I just want to do what I do.
Ray-AutisticRadio.com (51:05):
She was probably jealous of your DMs.
Jules-AutisticRadio.com (51:11):
Autistic radio is about us, it's for us, and it's from us.
Autistic radio is about you, it'sfor you, and it can be from you.
We have, every single Sunday, drop in, 4.
(51:33):
44pm every Sunday.
That's not live, that's us gettingtogether, us talking, community.
Every Sunday, Harry leads a 5 5 5 p.
m.
A discussion around theFacebook page that he creates.
(51:54):
Involve yourself by suggestingwhat we should talk about next.
Share it with Harry.
And then, the bigger picture.
Advocate.
Use us.
Speak to the world, your project,your idea, your enthusiasm.
(52:17):
We have a whole range of differentprograms that will fit what you want.
As far as listening goes, there'ssome challenging stuff out there.
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals, challenging
(52:41):
their ideas, and bringing whatyou say in other spaces to them.
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
(53:01):
Autistic radio is very varied.
We need a favour.
To encourage us, we need you to share us.
When you share us, yougive autistic people power.
When you share us, you makeus impossible to ignore.
(53:25):
When you repost on LinkedIn and Facebookand anywhere else, you're advocating
for everybody in the autistic community.
So pick the things that you'rehappy with and get them out there.
So thank you.
Thank you, thank you.
Thank you, from all of us.
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