May 2, 2025 • 35 mins
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Spectrum Voices Conversation presents "Harry's Facebook - 16th March 2025".
Sharing and discussing posts from Autistic Radio's Facebook page.
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Emergence Divergence: The Neurodivergent Ramblings of David Gray-Hammond
AUsome Training
Kaelynn's Autistic Angle
Neurodivergent_lou
Jordan James, The Autistic Photographer
Recorded on Sunday 16th March 2025.
Podcast runtime - 32 minutes.
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(00:00):
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Speaking.
Thank you Harry, andwelcome to Autistic Radio.
Every Sunday there's a 4, 4, 4 meetingwhere people drop in and chat about
things from their own lives that makesense and have a relationship to autism.
Today we were lucky to have, um, Michaeldrop in and he told us about calm spaces.
It's a forum, calm spaces.org aimedat the 40 plus 50 plus autistic adult.
And we know that there's a lot of usout there that don't have that much
network space, especially if we'rein the mature years and a lot of
us are not known about our autism.
Think about how we can help calm spaces,because a lot of our people are in
that demographic and it, you know, weare a demographic that gets forgotten.
Uh, we've got a coupleof recordings coming up.
We've, we've again secured, um, uh.
The two professionals who haveworked together before talking
about floor time and a BA andalternatives to a, B, A and changing
the world away from the bad old days.
Um, so we're gonna encourage thoseconversations, alternatives to a b, a.
And we've got another recording coming up.
Um, another thing that's, um, comeup recently is an invitation for
us to comment on co-production.
Um, we've been asked to have a teamsmeeting with the Irish Association of
uk, um, behaviorists because they'relooking to form some kind of large scale.
Co-production with the autistic community.
And I have to say, we start froma very skeptical angle on this.
Um, but we are an open organization,so what we do is we say yes and
we find out what it's all about.
And we don't just slam everyone'sthe door in people's faces.
We, so I've made an appointment oroffered some times for an appointment
to that conversation, and we'llkeep updated as goes further.
It's a very tentative, possiblypiece of advice that they're
asking for at the moment.
We're all organized for the conferencenext week, and this is the last
opportunity to email me in if youwant to be one of the people who has,
um, a short, pithy, um, question.
For the behaviorist community toput to their UK society conference.
Um, something that you think reallyrepresents what autistic people would
want to ask if they were standingthere being able to protest or say
something that enlightens them.
Um, so the, it's coming up toquite close to the wire before,
um, because I've, I've chosen afew from the, um, comments already.
So if, but you do have thelast opportunity, so email
news@autisticradio.com ifyou want to comment and have
something put out for that.
That's me, Harry.
Um, we're gonna be a bitbusier as we go through, but.
Thanks very much Jules.
Thanks for that update.
Good evening everyone.
This is Harris, Facebook for Sunday,the 16th of March, 2025, and this
(00:26):
is where I get through the Facebookposts and read through them and have a
discussion on each topic that we go on.
So I'll go right intoit with the first post.
Which is from Emergence Divergence,you know, divergence Ramblings of David
Gray Hammond, who's an author of books,writer of blogs, advocate, mentor,
(00:47):
trainer, and Professional Nuisance.
And what he's done a, he's donea, a column on, um, an article.
Say that again.
What David has done on articleon is regarding autistic people.
And the medical perceptions ofpain and how that is misunderstood.
So he says that autistic people aredying early, medical perceptions
of pain are contributing.
(01:09):
And he recently posted aboutautistic people and this.
So I'll go through his article.
He says that there are a lot of aspectsof autistic life in which we don't
highlight in a disparity in the culturalcompetency amongst our professionals.
Unfortunately, healthcare is not abattle we can choose to walk away from.
(01:31):
Our lives literally depend on beingtaken seriously and treated respectfully.
There are some troubling statistics aroundautistic life expectancy and mortality.
In my opinion, there is a correlation ofnot a ative relationship between medical
mistreatment of autistics and theseharrowing statistics of the statistics.
I have seen life experiences aroundthe age of 36 to 39 years of age for
(01:57):
autistic people, and he's got linksthat relates to that statistics.
I've also seen suggestions that weare 51% more likely to die in a given
year than the general population.
I don't think I need topush the point much further.
It is clear that we are notdemocratically that necessary
as the best outcomes in life.
(02:17):
Our experience of painis ultimately linked with
our sensory experience.
In particular, interceptivedifferences mean that we can have
a completely different response topain than our non-autistic peers.
Nootropic brains mean we might not beable to stop thinking about the little
pains, but may not even notice somethingsignificant or life changing the way
(02:43):
we embody pain is different as well.
Autistic people are knownfor having difficult.
Autistic people are known for havingdifferent physical expressions, and when
you throw in the significant relationshipbetween the autistic community and the
chronic pain community, we can see whyan autistic person may not appear to
be as much pain as they claim to be.
(03:03):
This doesn't absolve medicalprofessionals or a lack of understanding.
When
a person works in, they shouldbe taking people seriously.
Regardless of whether an ailmentpresents in the way that is expected
or not, I posit that dismissive attitudesamongst, I posit that dismissive
attitudes amongst medical professionalsand medical gaslighting lead to further
(03:25):
help complications from injury andillness to consider that any other way.
If doctors took us seriously, we wouldprobably live longer and happier lives.
For those working in healthcare, I applaudthe care you give to many, but there
is so much not being done for autisticpeople and that cannot be ignored.
(03:52):
Autistic people are dying every day fromailments that needn't have been terminal.
Next time someone tells youthat experience, believe them.
I. Heavy this particular topic forthe first one of the night, but what's
your's thoughts in this particular one?
I, I was ignored when I was in painby a dentist and it just carried
on as though nothing, I just leftme with a lifelong fear of dentist.
I was think, I was just thinkingabout how do difficult it is.
Um, or you know, for me, and I'msure I've heard for others too, too.
(04:15):
Describe your pain orrate your pain on a scale.
It's just really difficult.
Um, I've seen some visuals that seem alittle bit more helpful, um, but I always,
like, I, I think it's part of the reasonthat I find myself avoiding doctors, um,
and trying to just take care of myself asbest I can, which I know is not always the
(04:41):
best thing to do.
I have my own experience, you know, withdoctors and healthcare professionals.
And in fairness, I've, I've actuallybeen, you know, had a reasonable
experience in comparison to others.
But one that does stand out withme is, uh, when I went up to the
local hospital, 'cause I thoughtI did something to my shoulder.
(05:02):
Well, I did, but I thoughtit was something serious.
'cause I was playing as a goalkeeperand the way I was throwing myself on the
ground, uh, it kinda, I kinda hurt myself.
So
I went to the local hospital, uh, justto get a check to see if it wasn't seize.
'cause it wasn't accident.
Me saying it was just a checkto see whether I'm overthinking
about, it's just maybe a muscularthing that'll just pass in time.
I'm overthinking because it's sopainful and when I was trying to
(05:25):
explain this to the nurse that tookme in, she was very abrupt and very.
Know, very impatient, like you know, onwith, he tried to tell me, but as soon as
I told her I was autistic, she changed.
Then she sort of realized I'vemade a mistake and she could
have been more nicer after that.
But what that reminds me is thatcan happen to a lot of other people.
(05:47):
They may not kindastand up for themselves.
'cause I did say, wait a minute, please.
You know, please don'ttalk to me like that.
I'm autistic and find it difficultto explain my situation because I'm
a bit of distress here.
And, and she, she was fine after that.
But what I'm saying is it couldknock a lot of people's confidence
by going to any medical professionalsbecause of that attitude.
(06:08):
Maybe she was stressed and she resistingwith that, but that, that doesn't matter.
It's just that can affect so many peopleand, uh, so many bad experiences and
it can only take one bad experienceon one person that would stop you.
Kinda going to even with your, yourGP or anything like that ever again,
even though that's just one personand one experience, it doesn't matter.
(06:29):
One bad experience is enough to haunt you.
'cause I'm three, I mean, even thatlittle silly things I think of myself
haunt me, never mind something that'squite severe and traumatic even.
And there's always been that time whereI went to a doctor about an ailment.
Which I wasn't sure about, and Iwas hoping for the doctor to give
me an answer, but they're asking mequestions like, how much pain is it?
You know, it is just all these kind ofquestions and you find that difficult to,
to articulate a proper answer, you know,
(06:52):
to get the right treatmentor the right way forward.
And, and because you go to a generalpractitioner, you know your appointment's
limited as well, so you're thinkingdoes this countdown in your brain?
It's like, I've no
good time to go through a fullstory to give the doctor an actual,
you know, feel, concern that Ihave because of the time limit.
(07:12):
All these things come into play, andthat's not even touching on people who
have different pain thresholds and allthat, and how that can be misunderstood,
even though some is in desperate,uh, desperate need of medical care.
Harry, I could do with writingdown what you said to that, um,
that health professional when youadvocated for yourself, it just
(07:33):
sounded like such a helpful script.
I was thinking exactly the same thing.
Nicola put it on a cardand keep in your wallet.
Yeah.
I found that telling someone you areautistic is not always a good thing
because sometimes you tell them thatautistic, they go back to their,
(07:53):
please define view of what theythink autistic is and stop listening.
So it depends on the individual.
Um.
I think I was maybe lucky that day.
I think basically what it was is youcould tell that medical professional
wasn't stressed out and all that, andthat that can affect your judgment all but
you get, people are just, they know best.
If you tell them, theygo, no, I'm a doctor.
(08:14):
I've got the authority.
I'm a medical professional of some kind.
I know what I'm talking about.
You don't know what you're talkingabout, and you could be easily ignored.
So I can totally understand that thatcan come into play and that actually
upsets me that that happens to people.
I'm thinking that, um,a sentence like that.
Even without the word autistic in itis, is a good piece of self-advocacy.
(08:35):
It's a good, you know, calmway of saying, I, I'm having
difficulty with communicating.
Please, you know, that sudden appealto somebody's nature, to, to see
it as a different way around, youknow, instead of somebody being
awkward, somebody having difficulty.
I think that could work without.
The next post is from awesome training.
(09:00):
Who an education page, autisticled neuro affirming training,
mentoring, consultancy, and supportfor people ready to make the world
a better place for autistics.
And basically
they're sharing a quote or the kinddenouncing that general that's generally
said about people with autism or people.
They say that autistic have difficultyin interacting socially, but what
they're saying is autistics don'thave difficulty with interacting
(09:21):
socially, but we are being judgedsocially, leading to othering,
exclusion, bullying and discrimination.
Remove judgment, love.
What's other people's thoughts on this?
Well, it's a kind of chickenand egg circle, isn't it?
You know, if, if you are beingjudged socially, um, and that
(09:41):
is the root of where we start.
If you are being judged as inappropriate,um, excluded for the way you
communicate, um, then you end uphaving difficulty interacting socially.
So it's a bit circular.
I like the idea of changing the narrativeand saying it's not us at fault.
(10:08):
I like the idea that it's not us thatare interacting because we have a
difficulty that makes it imperfect.
Um, but the onus is on the societyaround us to have less of a narrow view
of how human beings should be overall.
For all their differences.
(10:28):
Um, we live in a world that somepeople want to push against.
Those hard won concepts and ideas thathave developed over my life, those
ideas of equality and people havingdifference, that to be respected and not
judged socially, they're not concepts.
(10:48):
Yeah.
Current sharing.
Always feel like non-autisticpeople in infantalize us
when we disclose our neuro differences,regardless of whether we have a great
deal, more knowledge and skill andskills than they do the setting.
They know things change andthey assume we are the ones who
(11:10):
are struggling to communicate.
Absolutely.
It's that disclosure as wellof saying that you're autistic.
How people step back from disclosing that.
'cause they might feel that or theyhave felt when they've done it before,
past experiences that they've beentreated differently, like inferior
(11:31):
or maybe not done in a bad way, butit's like people kinda trying to
be kinda, I don't know, just, just.
It's like it's, the approachis totally different.
It's like all of a suddenit's like feeling sorry for
you and trying to kindamake sure you're okay.
You okay?
And somebody's even giving adviceyou don't even want or even ask for.
So yeah, I can get that.
That's how I look at it.
The judgment is about how we judgeagainst how neurotypical people do things.
I have no problem socializing,but I social what lies as a
(11:52):
autistic person, socializes.
That's very true.
I mean, there's, this time I kindaabout to say this, I, I kinda laugh
even though I almost cry as well.
It's like there's a so-called normalways to do things like communicating or
even the way you dress, the way you walk.
The way you speak in terms of the, yourpicture of your voice, um, the language
that you use, not in terms of swearing,but in terms of speaking the right way
(12:14):
or doing or communicating the right way.
And as we know, um, a lot of autisticpeople don't communicate through
talking either it, they do othercommunication methods and there's
a kind of prejudice around thatand the assumption around that.
So, yeah, you're absolutely right.
It's like it's trying to show,there's different ways of doing
(12:37):
things, and just because it'sdifferent doesn't mean it's inferior.
Needs to be cured.
Um, I'm liking reading,um, KT in the text.
I always feel like non-autistic peopleinfantilize us when we disclose our
neuro differences, regardless ofwhether we have had a great deal more
knowledge and skills than they do.
The second that they know things changeand they assume that we are the ones
who are struggling to communicate.
Even if they thought we were weird beforein any way, many suddenly believe it's
okay to presume us as as incompetentwhen they find out that we're autistic.
And I am, I'm so glad to seesomebody else writing that.
Um, I remember right back to one of ourearliest, um, podcast right back in the.
Oh, crikey.
It must be a few years now.
And we, we kept covering, um, disclosure,um, the idea of disclosure because
we were talking to a researcher and aautism, um, professional at the time
(12:58):
who was realizing their own autism.
Um, and I remember saying very much how
dis hands you.
Means, means something completelydifferent to them, to what you
are disclosing and that theycan use it in any way they like.
(13:19):
Um, and so that when I disclose, I onlyreally disclose when I feel that it's not
going to change people's, um, attitudesor that it won't change them in any way
that I don't have a comfortability with.
In all kinds of stressfulsituations, I suppose.
I wouldn't say I was autistic.
I would mask my way through as asurvival because that would probably
(13:43):
be my experience masking up and gettingthrough it, um, rather than saying
that I was, um, autistic and hopingthat that would make sense to somebody.
Is.
Adult social care was being emphasized.
(14:03):
I'd stay with family.
They just spoke over me.
Yeah, there's been a lotof experiences of that.
I've had that myself.
In many ways.
It's like, uh, saying something and thenyou are not ridiculed, or they certainly
didn't say it to ridicule you, but youfelt you'd been ridiculed or insulted.
'cause you've said something, Ican't even give an example, but
there has been times where it's, oh,Harry, whatcha you talking about?
Oh, you can, I'm doing you sort of thing.
It's like, what?
And I don't mean to laugh,it's just, it's just comical.
Think back on it.
But it's, it's, you know, it can bequite damaging to a lot of people.
Um, even with good intentions.
Roman's using text.
He says, I have difficulty interactingsocially, but isn't autism.
I just have problems with the machine.
I don't quite get the nuances of whatRay is putting in his poetry there.
(14:23):
Um, KT Hass come up with, we often seeso many things way before others do.
We being the autistic community,and we are told progressive outside
of the box, ideas are not okay.
We are minimized or we are gaslitonly to later see them use our
(14:44):
ideas with no credit to us.
Of course, this is a theme that autisticpeople talk about a lot, a feeling
that, um, we put forward the ideas,they little push them, and then they
end up using them and themselves.
Nicola says Cassandra syndrome.
(15:04):
Kt the Greek story of Cassandra.
Blessed with foresight but cursedso that no one will believe her.
KT suspects that Ray is sayingthat he is not broken, but the
machine, the system is a machine.
The system is, and Rayagrees and says, thanks, kt.
The next post is fromHalen's artistic angle.
(15:27):
A public figure, autism advocate,therapist, and professional speaker.
What Kalyn shared is called UnpleasantAutism reality Loneliness still in
pajamas at 6:00 PM What Kalyn says,this shouldn't be used to anyone.
Statistically speaking, many autisticpeople don't grow up to live happy lives.
(15:50):
We face higher race of unemployment,isolation, abuse, health issues.
You get the idea.
My personal brand of tragedy comeswith a feeling that I can only
describe as whiplash because atthe age of mostly 28, I've achieved
things many people own a Gmail of.
(16:10):
I'm a published author, internationalspeaker, and I was even on Netflix.
Sure in the way that matters tohuman minds, I'm ahead, but in the
way that matters, human hearts, Ifeel that I've been left behind.
It's nothing short of disorientatingto feel so needed during business
hours, but so unnecessary onnights, weekends, and holidays.
(16:36):
In my advocacy work, I describe mycommunication abilities as the exception,
not the rule, because I refuse.
My success to contribute to the erasingof those with more profound needs.
But when it comes to the kind of pervasivelonging for connection, the sort of the
sort, but when it comes to the kindapervasive longing for connection, the
(17:01):
sort that quietly echoes everythingyou do, I not the exception at all.
I don't want pity, I want unity.
Authentic advocacy means we cancelebrate our success and still
being willing to confront the toughrealities associated with autism.
The journey isn't always clear thatevery step forward, no matter how small
(17:25):
matters, let's people starts on this.
It's um, it's a disconnect onloneliness of isolation not being,
um.
Nine to five advocacyfinishes for the person.
Um, and another thing that we, you know,let's not have toxic, um, positivity
(17:48):
about how it is to be autistic.
Let's, um, face up to someof the, um, the challenges.
And, you know, statisticallythere's lots of things that.
Also, um, usually has co-factors that riskit as well, like, um, poverty or, um, um,
you know, lack of work and all kinds ofthings that disadvantage yourself because
(18:12):
you are autistic in our society ratherthan anything intrinsic to your brain or.
Being honest and saying thatis part of the solution.
Um, being honest and realizing toyourself that you need something and
being honest, that we do need to embracethe different dis difficulties that
(18:34):
we have saying it out, you know, thatthat is a healing thing in itself.
That is a, a good thingthat we all need to embrace.
I see.
Um, you, you can improvethings if you admit them.
Yeah, some comments havebeen made that, you know, KT.
I hear that Raymond and aware alienationis default in our Western societies.
(18:59):
Robbie says It's the way how I feel.
I'm not welcome in most place.
Autism, automatic exclusionusing safeguarding.
Yeah, I.
You kinda go and this is quite heavy here.
And it was like reality and it'slike, it's not, it's, you know,
(19:22):
it's quite deep and quite traumaticbecause of the examples it was giving,
without giving an example just the wordsI was using, but it came, it was like a
real life sort of journey experience thing
(19:57):
where it's, it's real, butit's not like it tails off and
then it says it's all doom and gloom.
It says.
I've succeeded here andI've succeeded there.
But there's still barriers toovercome, which I think is very
inspirational for a lot of people.
Not
everyone, but to many people.
(20:34):
And that kinda struck a chord with me
just reading that.
I think,
um, unity is a really importantand strong word there.
You know, it makes you think that word.
I wouldn't say I fullyunderstand what she means
(21:03):
by it, but it's something making me
(23:35):
think
(29:08):
about unity.
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Speaking.
Thank you Harry, andwelcome to Autistic Radio.
Every Sunday there's a 4, 4, 4 meetingwhere people drop in and chat about
things from their own lives that makesense and have a relationship to autism.
Today we were lucky to have, um, Michaeldrop in and he told us about calm spaces.
It's a forum, calm spaces.org aimedat the 40 plus 50 plus autistic adult.
And we know that there's a lot of usout there that don't have that much
network space, especially if we'rein the mature years and a lot of
us are not known about our autism.
Think about how we can help calm spaces,because a lot of our people are in
that demographic and it, you know, weare a demographic that gets forgotten.
Uh, we've got a coupleof recordings coming up.
We've, we've again secured, um, uh.
The two professionals who haveworked together before talking
about floor time and a BA andalternatives to a, B, A and changing
the world away from the bad old days.
Um, so we're gonna encourage thoseconversations, alternatives to a b, a.
And we've got another recording coming up.
Um, another thing that's, um, comeup recently is an invitation for
us to comment on co-production.
Um, we've been asked to have a teamsmeeting with the Irish Association of
uk, um, behaviorists because they'relooking to form some kind of large scale.
Co-production with the autistic community.
And I have to say, we start froma very skeptical angle on this.
Um, but we are an open organization,so what we do is we say yes and
we find out what it's all about.
And we don't just slam everyone'sthe door in people's faces.
We, so I've made an appointment oroffered some times for an appointment
to that conversation, and we'llkeep updated as goes further.
It's a very tentative, possiblypiece of advice that they're
asking for at the moment.
We're all organized for the conferencenext week, and this is the last
opportunity to email me in if youwant to be one of the people who has,
um, a short, pithy, um, question.
For the behaviorist community toput to their UK society conference.
Um, something that you think reallyrepresents what autistic people would
want to ask if they were standingthere being able to protest or say
something that enlightens them.
Um, so the, it's coming up toquite close to the wire before,
um, because I've, I've chosen afew from the, um, comments already.
So if, but you do have thelast opportunity, so email
news@autisticradio.com ifyou want to comment and have
something put out for that.
That's me, Harry.
Um, we're gonna be a bitbusier as we go through, but.
Thanks very much Jules.
Thanks for that update.
Good evening everyone.
This is Harris, Facebook for Sunday,the 16th of March, 2025, and this
(00:26):
is where I get through the Facebookposts and read through them and have a
discussion on each topic that we go on.
So I'll go right intoit with the first post.
Which is from Emergence Divergence,you know, divergence Ramblings of David
Gray Hammond, who's an author of books,writer of blogs, advocate, mentor,
(00:47):
trainer, and Professional Nuisance.
And what he's done a, he's donea, a column on, um, an article.
Say that again.
What David has done on articleon is regarding autistic people.
And the medical perceptions ofpain and how that is misunderstood.
So he says that autistic people aredying early, medical perceptions
of pain are contributing.
(01:09):
And he recently posted aboutautistic people and this.
So I'll go through his article.
He says that there are a lot of aspectsof autistic life in which we don't
highlight in a disparity in the culturalcompetency amongst our professionals.
Unfortunately, healthcare is not abattle we can choose to walk away from.
(01:31):
Our lives literally depend on beingtaken seriously and treated respectfully.
There are some troubling statistics aroundautistic life expectancy and mortality.
In my opinion, there is a correlation ofnot a ative relationship between medical
mistreatment of autistics and theseharrowing statistics of the statistics.
I have seen life experiences aroundthe age of 36 to 39 years of age for
(01:57):
autistic people, and he's got linksthat relates to that statistics.
I've also seen suggestions that weare 51% more likely to die in a given
year than the general population.
I don't think I need topush the point much further.
It is clear that we are notdemocratically that necessary
as the best outcomes in life.
(02:17):
Our experience of painis ultimately linked with
our sensory experience.
In particular, interceptivedifferences mean that we can have
a completely different response topain than our non-autistic peers.
Nootropic brains mean we might not beable to stop thinking about the little
pains, but may not even notice somethingsignificant or life changing the way
(02:43):
we embody pain is different as well.
Autistic people are knownfor having difficult.
Autistic people are known for havingdifferent physical expressions, and when
you throw in the significant relationshipbetween the autistic community and the
chronic pain community, we can see whyan autistic person may not appear to
be as much pain as they claim to be.
(03:03):
This doesn't absolve medicalprofessionals or a lack of understanding.
When
a person works in, they shouldbe taking people seriously.
Regardless of whether an ailmentpresents in the way that is expected
or not, I posit that dismissive attitudesamongst, I posit that dismissive
attitudes amongst medical professionalsand medical gaslighting lead to further
(03:25):
help complications from injury andillness to consider that any other way.
If doctors took us seriously, we wouldprobably live longer and happier lives.
For those working in healthcare, I applaudthe care you give to many, but there
is so much not being done for autisticpeople and that cannot be ignored.
(03:52):
Autistic people are dying every day fromailments that needn't have been terminal.
Next time someone tells youthat experience, believe them.
I. Heavy this particular topic forthe first one of the night, but what's
your's thoughts in this particular one?
I, I was ignored when I was in painby a dentist and it just carried
on as though nothing, I just leftme with a lifelong fear of dentist.
I was think, I was just thinkingabout how do difficult it is.
Um, or you know, for me, and I'msure I've heard for others too, too.
(04:15):
Describe your pain orrate your pain on a scale.
It's just really difficult.
Um, I've seen some visuals that seem alittle bit more helpful, um, but I always,
like, I, I think it's part of the reasonthat I find myself avoiding doctors, um,
and trying to just take care of myself asbest I can, which I know is not always the
(04:41):
best thing to do.
I have my own experience, you know, withdoctors and healthcare professionals.
And in fairness, I've, I've actuallybeen, you know, had a reasonable
experience in comparison to others.
But one that does stand out withme is, uh, when I went up to the
local hospital, 'cause I thoughtI did something to my shoulder.
(05:02):
Well, I did, but I thoughtit was something serious.
'cause I was playing as a goalkeeperand the way I was throwing myself on the
ground, uh, it kinda, I kinda hurt myself.
So
I went to the local hospital, uh, justto get a check to see if it wasn't seize.
'cause it wasn't accident.
Me saying it was just a checkto see whether I'm overthinking
about, it's just maybe a muscularthing that'll just pass in time.
I'm overthinking because it's sopainful and when I was trying to
(05:25):
explain this to the nurse that tookme in, she was very abrupt and very.
Know, very impatient, like you know, onwith, he tried to tell me, but as soon as
I told her I was autistic, she changed.
Then she sort of realized I'vemade a mistake and she could
have been more nicer after that.
But what that reminds me is thatcan happen to a lot of other people.
(05:47):
They may not kindastand up for themselves.
'cause I did say, wait a minute, please.
You know, please don'ttalk to me like that.
I'm autistic and find it difficultto explain my situation because I'm
a bit of distress here.
And, and she, she was fine after that.
But what I'm saying is it couldknock a lot of people's confidence
by going to any medical professionalsbecause of that attitude.
(06:08):
Maybe she was stressed and she resistingwith that, but that, that doesn't matter.
It's just that can affect so many peopleand, uh, so many bad experiences and
it can only take one bad experienceon one person that would stop you.
Kinda going to even with your, yourGP or anything like that ever again,
even though that's just one personand one experience, it doesn't matter.
(06:29):
One bad experience is enough to haunt you.
'cause I'm three, I mean, even thatlittle silly things I think of myself
haunt me, never mind something that'squite severe and traumatic even.
And there's always been that time whereI went to a doctor about an ailment.
Which I wasn't sure about, and Iwas hoping for the doctor to give
me an answer, but they're asking mequestions like, how much pain is it?
You know, it is just all these kind ofquestions and you find that difficult to,
to articulate a proper answer, you know,
(06:52):
to get the right treatmentor the right way forward.
And, and because you go to a generalpractitioner, you know your appointment's
limited as well, so you're thinkingdoes this countdown in your brain?
It's like, I've no
good time to go through a fullstory to give the doctor an actual,
you know, feel, concern that Ihave because of the time limit.
(07:12):
All these things come into play, andthat's not even touching on people who
have different pain thresholds and allthat, and how that can be misunderstood,
even though some is in desperate,uh, desperate need of medical care.
Harry, I could do with writingdown what you said to that, um,
that health professional when youadvocated for yourself, it just
(07:33):
sounded like such a helpful script.
I was thinking exactly the same thing.
Nicola put it on a cardand keep in your wallet.
Yeah.
I found that telling someone you areautistic is not always a good thing
because sometimes you tell them thatautistic, they go back to their,
(07:53):
please define view of what theythink autistic is and stop listening.
So it depends on the individual.
Um.
I think I was maybe lucky that day.
I think basically what it was is youcould tell that medical professional
wasn't stressed out and all that, andthat that can affect your judgment all but
you get, people are just, they know best.
If you tell them, theygo, no, I'm a doctor.
(08:14):
I've got the authority.
I'm a medical professional of some kind.
I know what I'm talking about.
You don't know what you're talkingabout, and you could be easily ignored.
So I can totally understand that thatcan come into play and that actually
upsets me that that happens to people.
I'm thinking that, um,a sentence like that.
Even without the word autistic in itis, is a good piece of self-advocacy.
(08:35):
It's a good, you know, calmway of saying, I, I'm having
difficulty with communicating.
Please, you know, that sudden appealto somebody's nature, to, to see
it as a different way around, youknow, instead of somebody being
awkward, somebody having difficulty.
I think that could work without.
The next post is from awesome training.
(09:00):
Who an education page, autisticled neuro affirming training,
mentoring, consultancy, and supportfor people ready to make the world
a better place for autistics.
And basically
they're sharing a quote or the kinddenouncing that general that's generally
said about people with autism or people.
They say that autistic have difficultyin interacting socially, but what
they're saying is autistics don'thave difficulty with interacting
(09:21):
socially, but we are being judgedsocially, leading to othering,
exclusion, bullying and discrimination.
Remove judgment, love.
What's other people's thoughts on this?
Well, it's a kind of chickenand egg circle, isn't it?
You know, if, if you are beingjudged socially, um, and that
(09:41):
is the root of where we start.
If you are being judged as inappropriate,um, excluded for the way you
communicate, um, then you end uphaving difficulty interacting socially.
So it's a bit circular.
I like the idea of changing the narrativeand saying it's not us at fault.
(10:08):
I like the idea that it's not us thatare interacting because we have a
difficulty that makes it imperfect.
Um, but the onus is on the societyaround us to have less of a narrow view
of how human beings should be overall.
For all their differences.
(10:28):
Um, we live in a world that somepeople want to push against.
Those hard won concepts and ideas thathave developed over my life, those
ideas of equality and people havingdifference, that to be respected and not
judged socially, they're not concepts.
(10:48):
Yeah.
Current sharing.
Always feel like non-autisticpeople in infantalize us
when we disclose our neuro differences,regardless of whether we have a great
deal, more knowledge and skill andskills than they do the setting.
They know things change andthey assume we are the ones who
(11:10):
are struggling to communicate.
Absolutely.
It's that disclosure as wellof saying that you're autistic.
How people step back from disclosing that.
'cause they might feel that or theyhave felt when they've done it before,
past experiences that they've beentreated differently, like inferior
(11:31):
or maybe not done in a bad way, butit's like people kinda trying to
be kinda, I don't know, just, just.
It's like it's, the approachis totally different.
It's like all of a suddenit's like feeling sorry for
you and trying to kindamake sure you're okay.
You okay?
And somebody's even giving adviceyou don't even want or even ask for.
So yeah, I can get that.
That's how I look at it.
The judgment is about how we judgeagainst how neurotypical people do things.
I have no problem socializing,but I social what lies as a
(11:52):
autistic person, socializes.
That's very true.
I mean, there's, this time I kindaabout to say this, I, I kinda laugh
even though I almost cry as well.
It's like there's a so-called normalways to do things like communicating or
even the way you dress, the way you walk.
The way you speak in terms of the, yourpicture of your voice, um, the language
that you use, not in terms of swearing,but in terms of speaking the right way
(12:14):
or doing or communicating the right way.
And as we know, um, a lot of autisticpeople don't communicate through
talking either it, they do othercommunication methods and there's
a kind of prejudice around thatand the assumption around that.
So, yeah, you're absolutely right.
It's like it's trying to show,there's different ways of doing
(12:37):
things, and just because it'sdifferent doesn't mean it's inferior.
Needs to be cured.
Um, I'm liking reading,um, KT in the text.
I always feel like non-autistic peopleinfantilize us when we disclose our
neuro differences, regardless ofwhether we have had a great deal more
knowledge and skills than they do.
The second that they know things changeand they assume that we are the ones
who are struggling to communicate.
Even if they thought we were weird beforein any way, many suddenly believe it's
okay to presume us as as incompetentwhen they find out that we're autistic.
And I am, I'm so glad to seesomebody else writing that.
Um, I remember right back to one of ourearliest, um, podcast right back in the.
Oh, crikey.
It must be a few years now.
And we, we kept covering, um, disclosure,um, the idea of disclosure because
we were talking to a researcher and aautism, um, professional at the time
(12:58):
who was realizing their own autism.
Um, and I remember saying very much how
dis hands you.
Means, means something completelydifferent to them, to what you
are disclosing and that theycan use it in any way they like.
(13:19):
Um, and so that when I disclose, I onlyreally disclose when I feel that it's not
going to change people's, um, attitudesor that it won't change them in any way
that I don't have a comfortability with.
In all kinds of stressfulsituations, I suppose.
I wouldn't say I was autistic.
I would mask my way through as asurvival because that would probably
(13:43):
be my experience masking up and gettingthrough it, um, rather than saying
that I was, um, autistic and hopingthat that would make sense to somebody.
Is.
Adult social care was being emphasized.
(14:03):
I'd stay with family.
They just spoke over me.
Yeah, there's been a lotof experiences of that.
I've had that myself.
In many ways.
It's like, uh, saying something and thenyou are not ridiculed, or they certainly
didn't say it to ridicule you, but youfelt you'd been ridiculed or insulted.
'cause you've said something, Ican't even give an example, but
there has been times where it's, oh,Harry, whatcha you talking about?
Oh, you can, I'm doing you sort of thing.
It's like, what?
And I don't mean to laugh,it's just, it's just comical.
Think back on it.
But it's, it's, you know, it can bequite damaging to a lot of people.
Um, even with good intentions.
Roman's using text.
He says, I have difficulty interactingsocially, but isn't autism.
I just have problems with the machine.
I don't quite get the nuances of whatRay is putting in his poetry there.
(14:23):
Um, KT Hass come up with, we often seeso many things way before others do.
We being the autistic community,and we are told progressive outside
of the box, ideas are not okay.
We are minimized or we are gaslitonly to later see them use our
(14:44):
ideas with no credit to us.
Of course, this is a theme that autisticpeople talk about a lot, a feeling
that, um, we put forward the ideas,they little push them, and then they
end up using them and themselves.
Nicola says Cassandra syndrome.
(15:04):
Kt the Greek story of Cassandra.
Blessed with foresight but cursedso that no one will believe her.
KT suspects that Ray is sayingthat he is not broken, but the
machine, the system is a machine.
The system is, and Rayagrees and says, thanks, kt.
The next post is fromHalen's artistic angle.
(15:27):
A public figure, autism advocate,therapist, and professional speaker.
What Kalyn shared is called UnpleasantAutism reality Loneliness still in
pajamas at 6:00 PM What Kalyn says,this shouldn't be used to anyone.
Statistically speaking, many autisticpeople don't grow up to live happy lives.
(15:50):
We face higher race of unemployment,isolation, abuse, health issues.
You get the idea.
My personal brand of tragedy comeswith a feeling that I can only
describe as whiplash because atthe age of mostly 28, I've achieved
things many people own a Gmail of.
(16:10):
I'm a published author, internationalspeaker, and I was even on Netflix.
Sure in the way that matters tohuman minds, I'm ahead, but in the
way that matters, human hearts, Ifeel that I've been left behind.
It's nothing short of disorientatingto feel so needed during business
hours, but so unnecessary onnights, weekends, and holidays.
(16:36):
In my advocacy work, I describe mycommunication abilities as the exception,
not the rule, because I refuse.
My success to contribute to the erasingof those with more profound needs.
But when it comes to the kind of pervasivelonging for connection, the sort of the
sort, but when it comes to the kindapervasive longing for connection, the
(17:01):
sort that quietly echoes everythingyou do, I not the exception at all.
I don't want pity, I want unity.
Authentic advocacy means we cancelebrate our success and still
being willing to confront the toughrealities associated with autism.
The journey isn't always clear thatevery step forward, no matter how small
(17:25):
matters, let's people starts on this.
It's um, it's a disconnect onloneliness of isolation not being,
um.
Nine to five advocacyfinishes for the person.
Um, and another thing that we, you know,let's not have toxic, um, positivity
(17:48):
about how it is to be autistic.
Let's, um, face up to someof the, um, the challenges.
And, you know, statisticallythere's lots of things that.
Also, um, usually has co-factors that riskit as well, like, um, poverty or, um, um,
you know, lack of work and all kinds ofthings that disadvantage yourself because
(18:12):
you are autistic in our society ratherthan anything intrinsic to your brain or.
Being honest and saying thatis part of the solution.
Um, being honest and realizing toyourself that you need something and
being honest, that we do need to embracethe different dis difficulties that
(18:34):
we have saying it out, you know, thatthat is a healing thing in itself.
That is a, a good thingthat we all need to embrace.
I see.
Um, you, you can improvethings if you admit them.
Yeah, some comments havebeen made that, you know, KT.
I hear that Raymond and aware alienationis default in our Western societies.
(18:59):
Robbie says It's the way how I feel.
I'm not welcome in most place.
Autism, automatic exclusionusing safeguarding.
Yeah, I.
You kinda go and this is quite heavy here.
And it was like reality and it'slike, it's not, it's, you know,
(19:22):
it's quite deep and quite traumaticbecause of the examples it was giving,
without giving an example just the wordsI was using, but it came, it was like a
real life sort of journey experience thing
(19:57):
where it's, it's real, butit's not like it tails off and
then it says it's all doom and gloom.
It says.
I've succeeded here andI've succeeded there.
But there's still barriers toovercome, which I think is very
inspirational for a lot of people.
Not
everyone, but to many people.
(20:34):
And that kinda struck a chord with me
just reading that.
I think,
um, unity is a really importantand strong word there.
You know, it makes you think that word.
I wouldn't say I fullyunderstand what she means
(21:03):
by it, but it's something making me
(23:35):
think
(29:08):
about unity.
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