July 6, 2025 • 42 mins
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Spectrum Voices Conversation presents "Harry's Facebook - 18th May 2025".
Sharing and discussing posts from Autistic Radio Facebook page.
The post authors are:
Pete Wharmby, Autistic Author
Martin Newell
Life Of An Autistic Mom
Recorded on Sunday 18th May 2025.
Podcast runtime - 42 minutes.
#Heat #Sensitivty #Bedding
#Lateautistic #Selfcompensation
#Autisticlanguage #Neurdiversity
#Autisticchildren #Autisticadults
#Safespace
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Harry-Autistic-Association.org:
Good evening, everyone. (00:00):
undefined
This is Harry's Facebook forSunday, the 18th of May, 2025, . The
first post is from Pete Warby,
autistic author.
And is autistic and a DHD award-winningwriter and speaker on autism
and autistic lived experience.
And he says the following, it'sso hot in the UK at the moment.
(00:22):
It's sure to get hotter in the smer.
Who heat is my biggestsensory sensitivity.
So I have to carefully build mylife around it as best I can.
Cold showers, fans, aircon, ice,cold drinks, and finding windy
breezy places are my best solutionto it as clothing is a tricky one
(00:45):
for me, due to other sensitivities.
Learning about your own sensoryprofile isn't automatic.
It takes time and effort and often needssupport, but it's worth the work as it
allows for greater autonomy and freedom.
Freedom from awful,debilitating discomfort.
Settle down when you canand try to identify those
(01:06):
sensitive triggers and glamors.
It's not all negative, so you canregain control of your environment.
And the world went, decided that clotheswould have scratchy little tags that if
you cut them off would be even sharper.
And scratchier is oneexample of the sensitivity,
Raymond-AutisticRadio.com: yeah, I'm a bit dodgy with heat. (01:23):
undefined
See, I like to wear dark colors andblack and I don't really like disrobing,
, because of, know recently I've had botherwith insects biting me, , which may be
psychological, but I don't think so.
It's a natural reality.
, today I had to take an antihistaminebecause I've got a strange it in
(01:46):
my arm and there's nothing there.
So,
, whatever that is.
. I've always found heat a problemand we aren't even there yet.
I mean, this is only me.
This is only 1920 degrees in Scotland.
I remember when it hit nearly 30 andthat was like, oh, that's when you
have to take care in this country.
(02:08):
, especially with animals.
So, . Yeah, but I think there's akinda an emotional mood thing as well.
But smer for me, I getactually depressed in smer.
It's because of the intensity of, , life.
You know, there's so much going on.
People are kinda happy.
The onus is on you to behappy and to participate.
(02:31):
And if you're not up for that, thenit can be not a very nice time.
Do you see what I mean?
Nicola-AutisticRadio.com (02:36):
I'm a big fan of the heat, like I have to wear
like a hat from September to April.
, and I really don't likebreezes and stuff on me.
So the temperature wise, it makesme really like happy in the smer and
as long as I wear dark glasses, Ican cope with the glare of the son.
, I struggled more with that whenI was younger and just yeah, it
(02:58):
got a lot of headaches and things.
I don't know why I didn't have sunglassesor a hat back then, but yeah, a lot
of people do struggle with , the heat.
It's funny how we're all different and.
I got to do a sensory profilewith an occupational therapist
and found it's really helpful.
And, , I experienced that as wellof sometimes being really seriously
(03:20):
affected by sensory stuff, but havingdifficulty, , figuring out what was wrong,
so sort of not registering it very well.
So I've had to work on like noticing.
, and then just like using.
You know, being sort of careful, , andusing things to help me and stuff.
Raymond-AutisticRadio.com (03:39):
So no breezy sound gardens for you, Nicola, if you
are sensitive to the wind, unfortunately.
Nicola-AutisticRadio.com (03:46):
Yeah, as long as I didn't have to try and hold
a conversation, I suppose, , like Icould probably enjoy it, but like I
can appreciate the wind and stuff andI can appreciate getting up high on
a mountain and really like feelingthat, but like I can find, trying to
do other stuff while that's happening.
, just a bit kinda kryptonite, like,, remember leaf walk feels a bit of a
(04:09):
nemesis with that wind and dust and noise.
It's
Jules-AutisticRadio.com (04:13):
interesting to me how people have taken two aspects to
this, the actual physical experience ofthe heat being too much, but also how the
rest of society changes around us and.
How we feel excluded the wayeverybody else goes around things.
The way there's a bondingand you see groups of people,
(04:35):
friendship groups, family groups.
It's something that actuallymakes us feel more isolated.
Smer because it's more visual,how different our own lives is.
By comparison.
I don't
Nicola-AutisticRadio.com (04:48):
really pay any attention to what other people are doing.
Unless there're people that are tellingme about what they're doing and in that
moment I will care for to hear, but I justreally don't care what the other folks are
doing and actually life's a lot better.
Not
GR-Gary-AutisticRadio.com (05:06):
caring.
Just gonna say, I find that.
When it reaches a certain temperature,I'll be really ill for two or three
days when it's warm and after thatit's like I've acclimatized to it.
I did work outdoors for 12 years, butthe worst thing for me is blankets on
beds and I've just taken a blanket offmy bed and I'm probably will struggle
(05:27):
to steep with less blankets on my bed.
Obviously more blankets in my bed.
I wake up and I'mthrowing them off anyway,
Raymond-AutisticRadio.com (05:35):
so Do you prefer blanket to do
GR-Gary-AutisticRadio.com (05:38):
I have a linen sheet and then I've got 1, 2, 3,
4 blankets and a duvet on top of that,and I've just taken one blanket away.
Raymond-AutisticRadio.com (05:46):
Yeah, I can remember the succession of blankets.
There was an under sheet, there was acover sheet, there was all this stuff.
And then you know, thecandlewick, . Blankets.
I remember picking holes in them as a kid.
Anyway, that's a distraction.
But even when the DUYs arrived inour house, 'cause that, know, we
modernized, , there was still this theover sheet and under sheet business
(06:10):
that my mom did and all that, , whichI kinda broke the habit of eventually.
And just under sheet and.
But it's tos say it's theweight of the DVE as well.
You know, there's one for someor there's one for winter.
There's not having the dove at all.
Some nights,
GR-Gary-AutisticRadio.com (06:24):
yeah.
In the winter I have socks,, tracksuit bottoms and I wear
a t-shirt to bed as well.
, but it's not havingthat weight on me that.
I've thought about looking into weightedblankets, but I haven't got round to it.
Jules-AutisticRadio.com (06:39):
Yeah, I thought we were gonna get to that.
, an awful lot of autistic people talkabout needing some sort of weight pressure
on them to make them feel groundedand secure and also being tucked in.
I remember being tuckedin when I was a kid.
When, like Raymond was talking about theold fashioned blankets around you and a
(07:00):
candlewick over the top of it when it,your m and dad would come and tuck you
in and that would give you that feelingof security and if you had moved around
in the bed, you needed them to comeback and tuck you in again to make you
feel that weight and security of it.
Maybe that's part of it, GIA.
GR-Gary-AutisticRadio.com (07:17):
Yeah, I mean also when I go away I don't
sleep 'cause it's a strange bed.
I just can't get comfortable.
Usually, , I mean the longestI've been away is a week.
And by the time I'm on my way back, I'vegot used to the strange bed in the hotel.
Raymond-AutisticRadio.com (07:31):
That's a big thing for me as well.
Strange beds.
It's like I get strange dreams in them.
Nicola-AutisticRadio.com (07:36):
I think that there can be like challenges adjusting
to the change in temperature and stuffjust because we have to like, think again
about what you're meant to wear outside.
You can't just be like inyour usual routine, like grab
this and get out the door.
You've got to recalibrate.
And I think with the, like thesheets thing as well, , you know,
it's like having a compromise on.
(07:58):
Wait for temperature and things.
I love my weighted blanket and , Ifind it quite good in the smer
too 'cause it's quite cool.
, and it was just reminded me ofwhen the kids were weird, if they
were watching a cartoon, they wouldalways be like, come and sit on me.
Squash my legs.
Sit on my legs, please sit on my legs.
They were just always wantingto be squashed and I'd be
like, you're really small.
(08:19):
And then they would be sohappy if you kind of managed to
squash them just a little bit.
It was quite disturbing.
What
GR-Gary-AutisticRadio.com (08:25):
you're saying about air conditioning, I find
that it means that you are basicallygoing from the heat into a fridge.
When I go to the cinema in town, thesmer, I take a jacket with me to put on
because it is just like a fridge in there.
Jules-AutisticRadio.com (08:40):
I think the poster is really talking
about the autonomy you get whenyou take control yourself and
learn about your sensory profile.
, they say it takes time andeffort and sometimes it needs
support from somebody else.
But when you are not just stuck in aplace that's too hot, when you've got
(09:02):
the tools and the ways of thinking aboutit that can get around it increases your
autonomy, increases the size of the placethat you live in, the where you are.
So.
The poster is making a good pointto put some thought into it yourself
and realize your own sensitivities.
As everyone here has said,they, they have these things.
(09:23):
One practical thing is don'tcut the labels out of your,
, clothing because they're itchy.
Go to , a cheap shop, a pound shopor something, and get a stitch ripper
so that you actually cut the stitchesout and remove the threads as well.
'cause otherwise you'll end up witha nasty place that's even worse.
(09:43):
, so it's a stitch rippernot just cutting the label.
The next post is
Harry-Autistic-Association.org: from Martin Newell. (09:47):
undefined
And Spread is Duke of Tunesself-employed entrepreneur.
And what Martin's shared is somethingfrom the East Anglin Daily Times,
It's called, I think he's a bit special.
Can you still call it Asperger's?
We were asked recently.
The official answer is no medicalprofessionals now call it a
(10:11):
SD or autism spectr disorder.
New research claims that upto 20% of is, may be affected.
Julie, good in becoming boredwith hearing about neurodiversity.
Let's get to the point.
About 10 years ago, I was having myusual rage while struggling with some
simple bit of missionary or other.
(10:31):
When a nearby observer remarked
it's because your dyspraxicdyspraxia once known as clsy
child syndrome was the problem.
She said as an experiencedteacher of people with learning
difficulties, she just assedthat I must have known about it.
It was the first that I've heard of it.
I'd always just accepted, for instance,that I can't drive a car or play a dr kit.
(10:54):
I'm not even very good attailing left from right either.
As a musician, I have troublewith those instrents requiring
me to perform certain functions.
For example, clear accordion is impossiblefor me because like drs, it involves
my doing at least three time symptomsimultaneously at different speeds.
Dyspraxia, the teacher toldme it's not uncommon amongst
(11:18):
people with Asperger's syndrome.
At least I haven't got that.
I equipped, she nodded patientlyand didn't reply After she'd gone.
I read up on the subject.
I later spent AG sickly doinga long Asperger's test online.
The results seemed to imply thatI might be a borderline case.
(11:38):
About a week later,
I told my friend I'd taken a test.
She asked me whichparticular test I'd done.
I described it . Adding that it hadinvolved tons of tedious questions.
She replied, okay, Ido know that test now.
Would you mind doing it again
at this time?
Under my supervision, Ireacted with suspicion.
(12:00):
The second test proved me tobe rather further over the
line than the first actor.
This ruffled my feathers.
So if I'm Asperger's, how comeI've managed so far by myself?
She informed me that I'd selfcompensated because often
that's what people like me do.
The matter remained a bone of contention.
(12:23):
We were discussing in the pubstwo nights later when a rather
forthright at table interrupted.
I can tell you whether youwere on a spectr or not yet.
I'm gonna ask you one question.
When you was wrong, was peoplealways shouting at you and yet you
never knew why I answered that?
Yes, that'd been exactly thecase in every school which I
(12:46):
attended, as well as at home.
They yelled and he said, as.
I'm one and I can usually spot them.
You see readers if you grew up inthe sixties or seventies and were a
bit special, that's what happened.
They didn't call itneurodiversity back then.
They just shouted at you, clickedyou around the head, told you
(13:07):
to pay attention, or sometimesinquired as to whether or not
you were deaf or just stupid.
Nor were you picked for footballteams unless they were desperate.
Authority figures frequentlyordered you to look me in the eye.
You had no idea why.
Sometimes it was hardto read people's faces.
(13:28):
You couldn't tell when peoplewere lying or why they were angry.
Your silence was sometimes taken as db
insulins.
Instead, you concentrateupon what you accept.
In my case, reading, writing,and entertaining people.
If bullied, you might occasionallyreact with such inappropriate
savage that they drag you off.
You're shocked or mental sayingThat's something not right about you.
(13:51):
Boy, mostly though you just wept.
Stayed out their way.
And buried yourself in books.
You tried to copy what everyone else did.
I
suppose that would beself compensation, but
like Gary Newman
and Chris Perham, however, bothof whom discovered an adulthood
that they had Asperger's, I nowwouldn't have had any other way.
(14:11):
Composing music, writing andperforming have been the making of me.
I'm capable of unusualfeats of concentration in
all my chosen occupations.
If having a rocky time of it inmy youth was the price I paid,
I still consider it a bargain.
I know, of course there are differentdegrees of severity in certain
afflictions, but in my own case, I havea condition rather than a disability.
(14:36):
So if 20% of us are neurodiverse orwhatever experts are calling it this
week, it's really not that serious.
It doesn't preclude asworking, living, or living.
I think it would be far worseto be delighted by idleness.
. I'm glad that some genius had madethis glaringly obvious new discovery.
So it turns out that we
(14:58):
are not all exactly the same.
I've often suspected it.
After all, it would be a terrible thingif being normal became the new normal.
Can we get on now, please?
Jules-AutisticRadio.com (15:08):
Wow.
,What strikes me about this isall the information's there,
all the narrative there but.
Some people are just going toskip straight past this and
get angry about the language.
, and the attitude, you know,the stick up mustn't grble.
That kind of attitude is refreshing.
(15:32):
, and the way he's sayingthat, look, I'm me.
I'm happy to be me.
I recognize this stuff.
Is refreshing and interesting, andpeople should be able to express
themselves in any way they like.
, as far as the autistic community goes,he's breaking the rules on the political
(15:54):
correctness of how the neurodiversitymovement explains themselves and.
That's okay.
That's perfectly okay.
Why does he have to learn a whole newset of ways of expressing himself just
to fit in with the in crowd in autism?
(16:16):
And I would say he doesn't.
It's very interesting to me tohear somebody rock starring it.
But being clear, undermining somethings that people have worked a long
time to try and get out there, butif somebody cares about communication
and they spend time looking at it andreading again, he's not transgressing.
(16:42):
He's explaining what a lot of usexperience, so for all the people who
care about whether it's neurodivergentor neurodiversity Asperger's, or
whether they don't like the wordcondition, or just relax a bit and see
the truth in what he's saying as well.
Harry-Autistic-Association.org: It was interesting reading that (17:02):
undefined
because when I share these things,it's something I look forward to
discussing and what is taken from it.
And the thing that has mademe uncomfortable, you know,
when I knew towards kind ofreading it was Tom Asperger's.
It was kind mentioned a few timesin the piece, but reading it
out there, it felt like I was.
And I wasn't really sure how it was goingto end up, but it was a worthwhile one.
(17:25):
And what it did illustrate is it's one
person's view, one person'sjourney that you're sharing.
And I think it's always worthwhilesharing and talking about when it comes
to, discussion when it comes to justsharing some else, because it shows
you that it knocks down stereotypes.
(17:47):
Even you read something the first time,sometimes it takes maybe a second read
or read third or even more than that, andit might sound a bit different each time
because especially my brain, the way mybrain works, I need to read instructions
over and over to the make sort of sense.
Sometimes we didn't even somethinglike that, but somebody sharing
(18:08):
a journey, an opinion of you.
Always seems to come through indifferent ways, and that's what makes
these sort of pieces interesting.
Jules-AutisticRadio.com: It was nice to see. (18:15):
undefined
There was a comment there from theautistic community that doesn't
just, , shoot him down in flames.
, and I'll read it.
If you still want to call itAsperger's, it's up to you.
I will never use that term.
A friend of mine said that about meand when I told him the historical
context of not using that term.
(18:37):
He was genuinely shocked, and he saidthat he would never use it again.
, now that person has really thoughtabout what they want to say.
They don't like the term Asperger'sbeing used, but they right at the
beginning say, you know, you use thelanguage that you want to use, and
then explain why they don't use itfor reasons without attacking without.
(19:00):
Purposefully picking to hurtsomebody or police what they say.
GR-Gary-AutisticRadio.com (19:06):
That was me.
a friend of mine said he knew someonewith Asperger's, and I said to
him about the history of Asperger.
And he was genuinely shocked and he saidthat he would never use the term again.
I mean, if people want to identifyas Asperger, that's up to them,
but I am really uncomfortablewith using that as a term.
(19:26):
So that's why I posted that
Raymond-AutisticRadio.com (19:28):
I think I figured out from reading into the
comments on the guy's Facebook page thatthis was maybe about 10 to 12 years ago.
That this all happened and maybehe was just using the term asus
in that contemporary sense.
That's what it was called then, althoughit doesn't quite make that explicit.
(19:49):
Yeah.
This was very resonant to people ofa certain age group, you know, who
share the age group with a poster.
, there was one or two big things inthat I was nitpicking about, but I
can accept them, you know, , at timesthere's nothing wrong with idleness,
but that's just a personality issue.
You know, some people are just intobeing active and being, and doing
(20:10):
stuff and having checked the guy out.
He is very active and he's very creative.
So,
.I think that might be a brief explanation.
It's to the use of the term Asperger's.
I remember you mentioningonce JR that you liked it you
didn't like it necessarily, but
you prefer the term neurodiverse,maybe even on a sonic level.
(20:31):
Know, it sounds good.
, and it made me think aboutthat word because I'd been
struggling what do you say?
Is it neurodivergent?
Is it neurodiverse?
And getting it wrong all the time.
Neurodiverse lands as opposed toneurodivergent, which I think you
may be explained at one point.
GR-Gary-AutisticRadio.com (20:51):
I don't like the word autistic 'cause it strikes
me as a sharp and stabby word, whereasI like the word autism because it's a
smooth, silky word and neurodiverse isa smoother word than neurodivergent.
I dunno why.
That's just the way I think
Jules-AutisticRadio.com (21:09):
I find it interesting that the autistic
community wish to standardize thelanguage as a political statement.
And I think there'sbenefits in that when there.
When they're actually dealing from thebackground of them being a minority.
But language is also personal andlanguage is an expression of a person.
(21:34):
The way somebody's accent orthe words they choose should
be allowed as their palette.
How they want to paint the world.
, now if we take the wordneurodiverse, people would say that
the concept of neurodiversity isthat the hanity is neurodiverse.
(21:56):
There's everybody is a differentpart of a version of hanity, , that
it's all different and we're allneurodiverse because the actual
difference between us is neurodiversity,but that we can then take a group and
we can say they are neurodivergentfrom the average, from the main.
(22:17):
That doesn't make logical senseeither, because if we are all
neurodiverse, there is no main.
You know, so in some ways whynot use the word neurodiverse
if it feels better, if it soundsbetter, if that's the way that it
communicates to somebody that youare part of the autism world, fine.
(22:40):
But people will shout you down for it.
Harry-Autistic-Association.org (22:42):
The next post is from Life of an Autistic
Jules-AutisticRadio.com (22:46):
Mom,
Harry-Autistic-Association.org: which is a non-governmental (22:47):
undefined
organization and displayed as welcometo our secret world of autism.
Here we educate, motivate each other,and spread autism awareness, and
we also share our family lifestyle.
Welcome, enjoy our little worldof peace, love, and light.
And what they've shared is thefollowing quote, autistic people
(23:09):
deserve compassion, not pity.
They require love, understanding,acceptance, and support.
They'll excel as lawyers,doctors, and teachers.
I
Nicola-AutisticRadio.com (23:21):
mean, it sounds really nice, but it's
like in the UK the stat say
that about 22% of autistic adults arein employment according to the data
from the Office of National Statistics.
Like sometimes there's thisoh, autism's not a disability,
and I'm like, what's going on?
Because.
I find being autistic pretty likedifficult and it's, yeah, there's
(23:45):
societal like issues like in dealingwith other people, but there's
you know, sensory issues as well.
Like it's not just this.
Easy thing to live with and, oh,you're just gonna be a doctor.
Oh my gosh.
I don't think you'd wantme to be your doctor.
Quite honestly I feel like you'dwant a doctor who is a lot steadier
in a lot of ways, , and unable tolike, you know, think a lot faster.
(24:09):
So, I don't know, it just doesn'tseem very realistic to me.
But like I know thatautism's a very broad spectr.
Raymond-AutisticRadio.com (24:15):
You might be a different type of doctor, but not even
a doctor, like a health person, you know,I mean, all these state kind of, roles,
are formed by, you know, the conditions.
But there are variations on these things.
These needs are there, but, . I mean, justimagine there wasn't an organized state.
(24:36):
There'd still be peopledealing with health.
And I think you have experience,don't you, of, , looking
at alternative therapies.
, the law I suppose is maybe be a differentmatter that could get quite deep here.
Condition, there's that word again.
(24:58):
'cause we've beenthinking about condition.
It's you know, if you have sayan allergic reaction to things,
there's nothing wrong going on.
It's the body's justresponding to the situation.
And so if your condition makesyou unable to a certain extent
to tolerate or work with theprevailing conditions of employment.
(25:20):
What is expected of aso-called normal life.
, there's nothing wrong there.
That's just what's going on.
And, you have to worka kind of compensation.
Nicola-AutisticRadio.com (25:32):
I mean, I feel like I would probably be
able to like, help somebody accepttheir death, but I don't think like
mainstream medicine would be like aviable career path for me, really.
, but I.
Yeah I just think I've just got too oldto be able to be like idealistic about
like how we can just make the world greatby thinking about it better, you know?
And there's an awful lotof stuff that's way beyond.
(25:55):
Somebody who's just getting on in theirdaily life's ability to sort of change.
And , I think there just can belike a crippling amount of pressure
when really like just trying tolive like as well as you can day
to day is like quite a good goal.
But I could be, that could be aparticular perspective that hopefully
(26:15):
not a lot of people have to adopt.
Raymond-AutisticRadio.com (26:18):
I think a lot of people are responsive to little
victories in life, you know, and are awarethat, , there's a huge experience in life
out there that is sometimes beyond us.
And, , you know, what you weresaying there about helping accept
death, it's one of the mostfundamental aspects of that 'cause.
This is a society that fearsthat and has built a whole
(26:40):
society on fearing that reality.
So, if we don't get too deep on thatone, there are things that make it
less easy to be idealistic as youstated, , about achievement say, and
ambition and desire, and these thingsthat are expressed in this post.
I think just to bring it backto the post, I think that's what
(27:01):
we're trying to work around here.
Harry-Autistic-Association.org (27:04):
The Post, , is from a US perspective, and I think
what, from my position, from what I see,is trying to counter all the negative
kind of spin that's going on autism atthis particular moment politically and
socially over in United States of America.
So I'm getting that, but it seems it'sgoing from one extreme to another.
(27:26):
Some people reading that itmay kind of take them aback.
I mean, just think of my own life itself.
I was never going to be a doctoror a lawyer or anything like that.
I know what the post is trying to do.
It's trying to say, don't belittle people.
Looks what?
Look what autistic people can do.
And I get that.
Seems that's a quite a kind of strongand quite intense thing for many
(27:50):
autistic people will read from that.
And if they feel that they have not wentto that stage, like becoming, even getting
a job, they're thinkingtheir failures in life.
They're not, it's just the waysociety doesn't fit with autistic
people either for in the US or the UK
Jules-AutisticRadio.com (28:07):
or anywhere else in the world.
I think Harry, , it's a very good ideathat you pointed out the context of
where this person's speaking from.
, if you look at.
The webpage that goes with thepost, you'll be confronted with
a very different community, , anAmerican community, a community
(28:27):
mostly based around people of color.
, people from different ethnicbackgrounds that are not white.
So it may be that within that community.
This person is speaking in an appropriateway for them because they are fighting to
advocate for their child and also reachout to people like themselves that may
(28:54):
be told that autism is a curse on them.
So yes, the meme is a bit black and white.
It is a bit, we can becomelawyers and doctors and teachers.
I'm a frighteningly intelligent personand I'm not a lawyer, a doctor or a
teacher, and I'm never gonna becomeone, and part of that is my autism.
(29:14):
, there are so many other things you can bein life than these highly valued positions
Raymond-AutisticRadio.com (29:20):
are these highly valued positions normalizing.
It's just an impression I get.
I mean, I'd take on board theexplanation you've given about the
intersectional basis of the poster.
Nicola-AutisticRadio.com (29:32):
Yeah.
, We were talking about the Asperger'sword, and it's linked to nazi doctor and
how like it was this idea that, you know,these children are possibly gifted to
special children and they can be saved.
And it's this kind of, I dunno,like I hear you what you're
saying, Jills, but I also just Ifeel like it's max of that same
(29:58):
bad attitude.
, autism and, you ability and the kindawork that's valued in our society.
And, but then there's another side of itas well you know, perhaps with supports
with accommodations you know, . We canachieve quite different things, but
then that's really gonna change society.
If then there's gonna be have to bewhole swats of people whose jobs it is
(30:21):
to meet the needs of certain people sothat then they can do X, Y, or Z. So
I don't know, it's, we're going deep.
Jules-AutisticRadio.com (30:31):
This person's working in a society.
Which is constantly pathologizingtheir children and their kids.
So they're doing what anawful lot of autistic people
themselves do in their advocacy.
They say, fuck you, you know,they say We can be this.
, It's an exaggeration, it'sa push out in one direction.
(30:53):
I mean, if you look at their website,it's got puzzle pieces all over it.
It's got pathologizinglanguage all over it.
, but on the other hand, it's notAutism speaks, , it's not a BA
old fashioned a BA with kids.
Receiving electric shock from backpackslike the Rothenberg Center it's almost
(31:14):
as, you know, it's almost allowable onthe basis that they are doing some good
to increase people's self-esteem, , withall the caveats that everybody else says.
I don't think I disagree withanybody else's words here.
Somebody's put somethingvery important in the text.
They say, I worry aboutneurotypical normative expectations
(31:37):
amongst the autistic community.
I worry about that too.
This organization has that plastered allover it, but the alternative is no hope.
Pathology, and they're behind thecurve, but they're moving away
from, our children are fucked.
We just have to treat them like.
(31:58):
Children for the rest of their livesand they will never progress beyond.
Raymond-AutisticRadio.com (32:02):
Sorry, Joseph, is that the alternative to
neurotypical normative expectations?
I don't know.
I just
Jules-AutisticRadio.com: want to be forgiving. (32:08):
undefined
I. About people that are perhapsmisguided, but trying their best, , that
are making an incredible effort totry to say to the society around them
that there is potential in their kids.
And if they do that with an exaggerationof normal expectations, I'm willing
to forgive them for it because theyhave expectations for their kids.
Raymond-AutisticRadio.com (32:33):
Yeah, for sure.
, My concern is just that, , seewe're all conditioned in this way.
I'm there too.
I'm conditioned to haveneurotypical normative expectations.
That's the society we live in.
It's very difficult to even experiencethe alternatives, which are to not have
neurotypical normative expectations.
(32:54):
It's hopeless.
I. Creative, but
society doesn't afford spaces for that.
And I see that as if anything,the kinda work that I can do
Jules-AutisticRadio.com: in this community. (33:08):
undefined
I so agree with you, Raymond.
I so agree with you.
You know, it kind of hurts meto say it when I say they have
expectations for their kids.
It's yeah, you know, they might not be onthe road towards getting their children to
accept exactly who they are necessarily.
And they may have these ideasthat they should be normalized
(33:30):
, but they haven't given up.
, and I'm just willing to forgivethem for not having given up.
And you are one of the peoplethat can move to that next stage,
but other people maybe have to gothrough other stages before they get
Harry-Autistic-Association.org (33:44):
there.
I believe if this was shared from someonein the uk, the language was changed.
It wouldn't be lawyersand adults and teachers.
It be more about.
They
could be musicians, they could beartists, they could be writers, which
seems more realistic and maybe lesspressured than the wording that was put
(34:04):
across, but still has the same sentiment.
So I totally understand what's beingsaid, what's been shared as well,
and whereabouts in the journey this
person is, and where they live, of course,and the cultures that they live within.
And how we all feel about it.
It just shows you how fast it is.
How different it can be withincountries like the US and the uk,
(34:24):
which can differ quite a lot of
Jules-AutisticRadio.com (34:25):
things.
If we appear to be denigrating theexperience of mothers of autistic
children, we will do ourselves adisservice because there's a real
prickliness, there's a real who'sin the right camp thing going out
there in all kinds of ways in autism.
And we would want to support parents.
(34:49):
. We would want parents to feel as thoughthey could converse with us, speak
with us, listen to us, and not comeacross enormous amounts of criticism,
but us be part of their support.
, and that's the only way that.
As these children develop and go onand build their own self-esteem and
(35:11):
their own sense of identity, it's ownthe only way that, that they will have
access to further ideas away from whatthey've been brought up with is if we are
not a scary against version of autism.
Harry-Autistic-Association.org (35:25):
Thanks everybody for taking part tonight.
That was a great discussion.
A special thanks to the people who sharethese posts that give us the topics to
discuss, which is very much appreciatedand it does create and demonstrate how so
many things can be talked about throughthe topic of autism and autistic life.
So this is Harry's Facebookfor Sunday, the 18th of May 25,
(35:49):
which is part of Spectr Voicesconversation, which is sheer.
5:55 PM to 7:30 PM UK time and on FacebookLive and YouTube live and other platforms.
And we're here every Sunday and I lookforward to doing the same next week.
So thank you once again andI'll hand over to Jules.
Jules-AutisticRadio.com (36:07):
Thank you, Harry.
That was an emotional experiencetaking part and, . You sharing
the things that you shared.
Thank you very much for thework that you do for us there.
Autistic Association supports autisticradio and we open a meeting in the open
to discuss what we do and how we do it.
At this juncture, I alwaysspeak a little bit about.
(36:29):
What we're doing here at AutisticRadio and how it is autistic
association, the entirely autisticcharity that we set up ourselves that
supports the work that we're doing.
One of the things that we do is we reachout when we are invited to conferences.
We were.
(36:50):
Represented at the UK Society for BehaviorAnalysts in their annual conference in
the spring, and we have just completed apresentation of the autistic radio model
at the main PBS Positive Behavior SupportConference in Newcastle just last week.
(37:10):
And what I presented there.
With the help of my colleagues hereat Autistic Radio was the concept that
the way they as professionals inviteus to fors, invite us to focus groups,
to hear what we think and say isn'tnecessarily the best format for us.
(37:30):
And so I presented theautistic radio model.
A way of having a safe space wherewe ourselves felt as though we were
not overwhelmed by the neurotypicalexpectations, where we can do it from
the comfort of our own home off camera.
And we are allowed to speakquietly and we are allowed to
(37:51):
pause while we are thinking.
And there's no need to fillin all the gaps amongst other.
Features.
I believe that some ofthe people there got it.
Because many people found me duringthat conference and they made a special
effort to tell me things like I was bravetaking part in conversations that other
(38:15):
autistic people were unwilling perhapsto take part in a, BA and they also
respected that there was a differencethat we needed when we communicated.
Overall, we got a lot of performance abouthow well we do at autistic radio, but.
(38:35):
Those of you who have been advocatingout there for a while will also realize
that it's the behavior that matters.
And so just being told you're doing verywell has to translate into behaviors and
actions from the professional community.
We will watch this space.
Part of what we do has got theattention of one of the main charities,
(39:00):
the charity called Scottish Autism.
I can't say that Scottish autismhas welcomed the individual voice
of the autistic community, if that'swhat we are, our independence.
As opposed to reliance on them isa little bit frightening to them.
However, we have received a grant fromthem and the grant was received on the
(39:23):
basis that we would have more studiosout there and make it more accessible.
For people to, to join in on whatwe do here on autistic radio.
So as an open meeting now, I wantthe guys to kind of come with me and
discuss what we should spend thissmall amount of money, this two and
a half thousand pounds we have atthe moment, , to spend on equipment.
(39:47):
What's the feelings ofthe priority of the group?
Harry-Autistic-Association.org (39:50):
Well, I think, , there's an opportunity there
to get more people involved, but thething that I'm always kinda wary of is
the stipulations of what the grant isand what they mean as other studios.
Are they talking aboutequipment like we have just now?
For instance, I have my own studio doorin my living room because I've got the
equipment to, you know, and the computers,et cetera, to do what I'm doing just now.
(40:14):
Is that what they're meaning or arethey meaning another place for people to
Jules-AutisticRadio.com (40:17):
go to?
When they asked me to do alittle application form and I put
down that we would spend it on.
Mobile or microphone studios thatcould be out there for people to use.
, and I'm aware that some of themembers that take part, , their
equipment is going to be outta datesoon because it's on Windows 10.
(40:41):
, so from my point of view, mysuggestion would be that maybe we
should get a good deal on some.
Laptops and make sure that everybody isgoing to be able to join in and continue
to join in before we add extra studios.
Who out there is stilldealing with Windows 10?
(41:02):
, I think Lucy is, , I think GR has aproblem with his machine at the moment.
, I don't know about Nicola.
Maybe Nicola has a problem.
, and maybe even it wouldbe a good idea for.
Raymond to have an alternativeto the tower computer.
He's using.
I, what do you guys think,
Raymond-AutisticRadio.com (41:21):
Jules?
I'm on a laptop.
Sorry.
Windows 10 expiring.
Nicola-AutisticRadio.com (41:26):
My laptop is a refurbished secondhand thing that I bought
off eBay, so I have no idea how old it is.
, it's a Chromebook and what any.
I'll get that informationto you another time
Jules-AutisticRadio.com (41:40):
harry, what do you think about this?
, I'm just listening to what we've gothere and I'm guessing that we've got
at least three people, maybe fourpeople out there whose computers are.
Going to be outta date veryquickly and maybe we should be
updating those and providing thosepeople with this new equipment.
Harry-Autistic-Association.org (42:01):
I'm totally happy with that, considering
the people we're talking about havebeen involved and they've been very
committed in the last while, youknow, taking part, doing things,
and . Wanna take care of that firstbefore moving on into anything else.
So I'm a total gamer because we know howfast computers and equipment can go out
of day because of the way they're set up.
(42:22):
So if there's a way of gettingthem updated and the money
is available, why not use it?
Jules-AutisticRadio.com (42:27):
So I'm glad we had this short
conversation out in the open.
, it looks as though offline.
We'll have a discussion and see whatwe can do to make sure that everything
that we're doing here at Autisticradio is future proof and move on.
undefined
This is Harry's Facebook forSunday, the 18th of May, 2025, . The
first post is from Pete Warby,
autistic author.
And is autistic and a DHD award-winningwriter and speaker on autism
and autistic lived experience.
And he says the following, it'sso hot in the UK at the moment.
(00:22):
It's sure to get hotter in the smer.
Who heat is my biggestsensory sensitivity.
So I have to carefully build mylife around it as best I can.
Cold showers, fans, aircon, ice,cold drinks, and finding windy
breezy places are my best solutionto it as clothing is a tricky one
(00:45):
for me, due to other sensitivities.
Learning about your own sensoryprofile isn't automatic.
It takes time and effort and often needssupport, but it's worth the work as it
allows for greater autonomy and freedom.
Freedom from awful,debilitating discomfort.
Settle down when you canand try to identify those
(01:06):
sensitive triggers and glamors.
It's not all negative, so you canregain control of your environment.
And the world went, decided that clotheswould have scratchy little tags that if
you cut them off would be even sharper.
And scratchier is oneexample of the sensitivity,
Raymond-AutisticRadio.com: yeah, I'm a bit dodgy with heat. (01:23):
undefined
See, I like to wear dark colors andblack and I don't really like disrobing,
, because of, know recently I've had botherwith insects biting me, , which may be
psychological, but I don't think so.
It's a natural reality.
, today I had to take an antihistaminebecause I've got a strange it in
(01:46):
my arm and there's nothing there.
So,
, whatever that is.
. I've always found heat a problemand we aren't even there yet.
I mean, this is only me.
This is only 1920 degrees in Scotland.
I remember when it hit nearly 30 andthat was like, oh, that's when you
have to take care in this country.
(02:08):
, especially with animals.
So, . Yeah, but I think there's akinda an emotional mood thing as well.
But smer for me, I getactually depressed in smer.
It's because of the intensity of, , life.
You know, there's so much going on.
People are kinda happy.
The onus is on you to behappy and to participate.
(02:31):
And if you're not up for that, thenit can be not a very nice time.
Do you see what I mean?
Nicola-AutisticRadio.com (02:36):
I'm a big fan of the heat, like I have to wear
like a hat from September to April.
, and I really don't likebreezes and stuff on me.
So the temperature wise, it makesme really like happy in the smer and
as long as I wear dark glasses, Ican cope with the glare of the son.
, I struggled more with that whenI was younger and just yeah, it
(02:58):
got a lot of headaches and things.
I don't know why I didn't have sunglassesor a hat back then, but yeah, a lot
of people do struggle with , the heat.
It's funny how we're all different and.
I got to do a sensory profilewith an occupational therapist
and found it's really helpful.
And, , I experienced that as wellof sometimes being really seriously
(03:20):
affected by sensory stuff, but havingdifficulty, , figuring out what was wrong,
so sort of not registering it very well.
So I've had to work on like noticing.
, and then just like using.
You know, being sort of careful, , andusing things to help me and stuff.
Raymond-AutisticRadio.com (03:39):
So no breezy sound gardens for you, Nicola, if you
are sensitive to the wind, unfortunately.
Nicola-AutisticRadio.com (03:46):
Yeah, as long as I didn't have to try and hold
a conversation, I suppose, , like Icould probably enjoy it, but like I
can appreciate the wind and stuff andI can appreciate getting up high on
a mountain and really like feelingthat, but like I can find, trying to
do other stuff while that's happening.
, just a bit kinda kryptonite, like,, remember leaf walk feels a bit of a
(04:09):
nemesis with that wind and dust and noise.
It's
Jules-AutisticRadio.com (04:13):
interesting to me how people have taken two aspects to
this, the actual physical experience ofthe heat being too much, but also how the
rest of society changes around us and.
How we feel excluded the wayeverybody else goes around things.
The way there's a bondingand you see groups of people,
(04:35):
friendship groups, family groups.
It's something that actuallymakes us feel more isolated.
Smer because it's more visual,how different our own lives is.
By comparison.
I don't
Nicola-AutisticRadio.com (04:48):
really pay any attention to what other people are doing.
Unless there're people that are tellingme about what they're doing and in that
moment I will care for to hear, but I justreally don't care what the other folks are
doing and actually life's a lot better.
Not
GR-Gary-AutisticRadio.com (05:06):
caring.
Just gonna say, I find that.
When it reaches a certain temperature,I'll be really ill for two or three
days when it's warm and after thatit's like I've acclimatized to it.
I did work outdoors for 12 years, butthe worst thing for me is blankets on
beds and I've just taken a blanket offmy bed and I'm probably will struggle
(05:27):
to steep with less blankets on my bed.
Obviously more blankets in my bed.
I wake up and I'mthrowing them off anyway,
Raymond-AutisticRadio.com (05:35):
so Do you prefer blanket to do
GR-Gary-AutisticRadio.com (05:38):
I have a linen sheet and then I've got 1, 2, 3,
4 blankets and a duvet on top of that,and I've just taken one blanket away.
Raymond-AutisticRadio.com (05:46):
Yeah, I can remember the succession of blankets.
There was an under sheet, there was acover sheet, there was all this stuff.
And then you know, thecandlewick, . Blankets.
I remember picking holes in them as a kid.
Anyway, that's a distraction.
But even when the DUYs arrived inour house, 'cause that, know, we
modernized, , there was still this theover sheet and under sheet business
(06:10):
that my mom did and all that, , whichI kinda broke the habit of eventually.
And just under sheet and.
But it's tos say it's theweight of the DVE as well.
You know, there's one for someor there's one for winter.
There's not having the dove at all.
Some nights,
GR-Gary-AutisticRadio.com (06:24):
yeah.
In the winter I have socks,, tracksuit bottoms and I wear
a t-shirt to bed as well.
, but it's not havingthat weight on me that.
I've thought about looking into weightedblankets, but I haven't got round to it.
Jules-AutisticRadio.com (06:39):
Yeah, I thought we were gonna get to that.
, an awful lot of autistic people talkabout needing some sort of weight pressure
on them to make them feel groundedand secure and also being tucked in.
I remember being tuckedin when I was a kid.
When, like Raymond was talking about theold fashioned blankets around you and a
(07:00):
candlewick over the top of it when it,your m and dad would come and tuck you
in and that would give you that feelingof security and if you had moved around
in the bed, you needed them to comeback and tuck you in again to make you
feel that weight and security of it.
Maybe that's part of it, GIA.
GR-Gary-AutisticRadio.com (07:17):
Yeah, I mean also when I go away I don't
sleep 'cause it's a strange bed.
I just can't get comfortable.
Usually, , I mean the longestI've been away is a week.
And by the time I'm on my way back, I'vegot used to the strange bed in the hotel.
Raymond-AutisticRadio.com (07:31):
That's a big thing for me as well.
Strange beds.
It's like I get strange dreams in them.
Nicola-AutisticRadio.com (07:36):
I think that there can be like challenges adjusting
to the change in temperature and stuffjust because we have to like, think again
about what you're meant to wear outside.
You can't just be like inyour usual routine, like grab
this and get out the door.
You've got to recalibrate.
And I think with the, like thesheets thing as well, , you know,
it's like having a compromise on.
(07:58):
Wait for temperature and things.
I love my weighted blanket and , Ifind it quite good in the smer
too 'cause it's quite cool.
, and it was just reminded me ofwhen the kids were weird, if they
were watching a cartoon, they wouldalways be like, come and sit on me.
Squash my legs.
Sit on my legs, please sit on my legs.
They were just always wantingto be squashed and I'd be
like, you're really small.
(08:19):
And then they would be sohappy if you kind of managed to
squash them just a little bit.
It was quite disturbing.
What
GR-Gary-AutisticRadio.com (08:25):
you're saying about air conditioning, I find
that it means that you are basicallygoing from the heat into a fridge.
When I go to the cinema in town, thesmer, I take a jacket with me to put on
because it is just like a fridge in there.
Jules-AutisticRadio.com (08:40):
I think the poster is really talking
about the autonomy you get whenyou take control yourself and
learn about your sensory profile.
, they say it takes time andeffort and sometimes it needs
support from somebody else.
But when you are not just stuck in aplace that's too hot, when you've got
(09:02):
the tools and the ways of thinking aboutit that can get around it increases your
autonomy, increases the size of the placethat you live in, the where you are.
So.
The poster is making a good pointto put some thought into it yourself
and realize your own sensitivities.
As everyone here has said,they, they have these things.
(09:23):
One practical thing is don'tcut the labels out of your,
, clothing because they're itchy.
Go to , a cheap shop, a pound shopor something, and get a stitch ripper
so that you actually cut the stitchesout and remove the threads as well.
'cause otherwise you'll end up witha nasty place that's even worse.
(09:43):
, so it's a stitch rippernot just cutting the label.
The next post is
Harry-Autistic-Association.org: from Martin Newell. (09:47):
undefined
And Spread is Duke of Tunesself-employed entrepreneur.
And what Martin's shared is somethingfrom the East Anglin Daily Times,
It's called, I think he's a bit special.
Can you still call it Asperger's?
We were asked recently.
The official answer is no medicalprofessionals now call it a
(10:11):
SD or autism spectr disorder.
New research claims that upto 20% of is, may be affected.
Julie, good in becoming boredwith hearing about neurodiversity.
Let's get to the point.
About 10 years ago, I was having myusual rage while struggling with some
simple bit of missionary or other.
(10:31):
When a nearby observer remarked
it's because your dyspraxicdyspraxia once known as clsy
child syndrome was the problem.
She said as an experiencedteacher of people with learning
difficulties, she just assedthat I must have known about it.
It was the first that I've heard of it.
I'd always just accepted, for instance,that I can't drive a car or play a dr kit.
(10:54):
I'm not even very good attailing left from right either.
As a musician, I have troublewith those instrents requiring
me to perform certain functions.
For example, clear accordion is impossiblefor me because like drs, it involves
my doing at least three time symptomsimultaneously at different speeds.
Dyspraxia, the teacher toldme it's not uncommon amongst
(11:18):
people with Asperger's syndrome.
At least I haven't got that.
I equipped, she nodded patientlyand didn't reply After she'd gone.
I read up on the subject.
I later spent AG sickly doinga long Asperger's test online.
The results seemed to imply thatI might be a borderline case.
(11:38):
About a week later,
I told my friend I'd taken a test.
She asked me whichparticular test I'd done.
I described it . Adding that it hadinvolved tons of tedious questions.
She replied, okay, Ido know that test now.
Would you mind doing it again
at this time?
Under my supervision, Ireacted with suspicion.
(12:00):
The second test proved me tobe rather further over the
line than the first actor.
This ruffled my feathers.
So if I'm Asperger's, how comeI've managed so far by myself?
She informed me that I'd selfcompensated because often
that's what people like me do.
The matter remained a bone of contention.
(12:23):
We were discussing in the pubstwo nights later when a rather
forthright at table interrupted.
I can tell you whether youwere on a spectr or not yet.
I'm gonna ask you one question.
When you was wrong, was peoplealways shouting at you and yet you
never knew why I answered that?
Yes, that'd been exactly thecase in every school which I
(12:46):
attended, as well as at home.
They yelled and he said, as.
I'm one and I can usually spot them.
You see readers if you grew up inthe sixties or seventies and were a
bit special, that's what happened.
They didn't call itneurodiversity back then.
They just shouted at you, clickedyou around the head, told you
(13:07):
to pay attention, or sometimesinquired as to whether or not
you were deaf or just stupid.
Nor were you picked for footballteams unless they were desperate.
Authority figures frequentlyordered you to look me in the eye.
You had no idea why.
Sometimes it was hardto read people's faces.
(13:28):
You couldn't tell when peoplewere lying or why they were angry.
Your silence was sometimes taken as db
insulins.
Instead, you concentrateupon what you accept.
In my case, reading, writing,and entertaining people.
If bullied, you might occasionallyreact with such inappropriate
savage that they drag you off.
You're shocked or mental sayingThat's something not right about you.
(13:51):
Boy, mostly though you just wept.
Stayed out their way.
And buried yourself in books.
You tried to copy what everyone else did.
I
suppose that would beself compensation, but
like Gary Newman
and Chris Perham, however, bothof whom discovered an adulthood
that they had Asperger's, I nowwouldn't have had any other way.
(14:11):
Composing music, writing andperforming have been the making of me.
I'm capable of unusualfeats of concentration in
all my chosen occupations.
If having a rocky time of it inmy youth was the price I paid,
I still consider it a bargain.
I know, of course there are differentdegrees of severity in certain
afflictions, but in my own case, I havea condition rather than a disability.
(14:36):
So if 20% of us are neurodiverse orwhatever experts are calling it this
week, it's really not that serious.
It doesn't preclude asworking, living, or living.
I think it would be far worseto be delighted by idleness.
. I'm glad that some genius had madethis glaringly obvious new discovery.
So it turns out that we
(14:58):
are not all exactly the same.
I've often suspected it.
After all, it would be a terrible thingif being normal became the new normal.
Can we get on now, please?
Jules-AutisticRadio.com (15:08):
Wow.
,What strikes me about this isall the information's there,
all the narrative there but.
Some people are just going toskip straight past this and
get angry about the language.
, and the attitude, you know,the stick up mustn't grble.
That kind of attitude is refreshing.
(15:32):
, and the way he's sayingthat, look, I'm me.
I'm happy to be me.
I recognize this stuff.
Is refreshing and interesting, andpeople should be able to express
themselves in any way they like.
, as far as the autistic community goes,he's breaking the rules on the political
(15:54):
correctness of how the neurodiversitymovement explains themselves and.
That's okay.
That's perfectly okay.
Why does he have to learn a whole newset of ways of expressing himself just
to fit in with the in crowd in autism?
(16:16):
And I would say he doesn't.
It's very interesting to me tohear somebody rock starring it.
But being clear, undermining somethings that people have worked a long
time to try and get out there, butif somebody cares about communication
and they spend time looking at it andreading again, he's not transgressing.
(16:42):
He's explaining what a lot of usexperience, so for all the people who
care about whether it's neurodivergentor neurodiversity Asperger's, or
whether they don't like the wordcondition, or just relax a bit and see
the truth in what he's saying as well.
Harry-Autistic-Association.org: It was interesting reading that (17:02):
undefined
because when I share these things,it's something I look forward to
discussing and what is taken from it.
And the thing that has mademe uncomfortable, you know,
when I knew towards kind ofreading it was Tom Asperger's.
It was kind mentioned a few timesin the piece, but reading it
out there, it felt like I was.
And I wasn't really sure how it was goingto end up, but it was a worthwhile one.
(17:25):
And what it did illustrate is it's one
person's view, one person'sjourney that you're sharing.
And I think it's always worthwhilesharing and talking about when it comes
to, discussion when it comes to justsharing some else, because it shows
you that it knocks down stereotypes.
(17:47):
Even you read something the first time,sometimes it takes maybe a second read
or read third or even more than that, andit might sound a bit different each time
because especially my brain, the way mybrain works, I need to read instructions
over and over to the make sort of sense.
Sometimes we didn't even somethinglike that, but somebody sharing
(18:08):
a journey, an opinion of you.
Always seems to come through indifferent ways, and that's what makes
these sort of pieces interesting.
Jules-AutisticRadio.com: It was nice to see. (18:15):
undefined
There was a comment there from theautistic community that doesn't
just, , shoot him down in flames.
, and I'll read it.
If you still want to call itAsperger's, it's up to you.
I will never use that term.
A friend of mine said that about meand when I told him the historical
context of not using that term.
(18:37):
He was genuinely shocked, and he saidthat he would never use it again.
, now that person has really thoughtabout what they want to say.
They don't like the term Asperger'sbeing used, but they right at the
beginning say, you know, you use thelanguage that you want to use, and
then explain why they don't use itfor reasons without attacking without.
(19:00):
Purposefully picking to hurtsomebody or police what they say.
GR-Gary-AutisticRadio.com (19:06):
That was me.
a friend of mine said he knew someonewith Asperger's, and I said to
him about the history of Asperger.
And he was genuinely shocked and he saidthat he would never use the term again.
I mean, if people want to identifyas Asperger, that's up to them,
but I am really uncomfortablewith using that as a term.
(19:26):
So that's why I posted that
Raymond-AutisticRadio.com (19:28):
I think I figured out from reading into the
comments on the guy's Facebook page thatthis was maybe about 10 to 12 years ago.
That this all happened and maybehe was just using the term asus
in that contemporary sense.
That's what it was called then, althoughit doesn't quite make that explicit.
(19:49):
Yeah.
This was very resonant to people ofa certain age group, you know, who
share the age group with a poster.
, there was one or two big things inthat I was nitpicking about, but I
can accept them, you know, , at timesthere's nothing wrong with idleness,
but that's just a personality issue.
You know, some people are just intobeing active and being, and doing
(20:10):
stuff and having checked the guy out.
He is very active and he's very creative.
So,
.I think that might be a brief explanation.
It's to the use of the term Asperger's.
I remember you mentioningonce JR that you liked it you
didn't like it necessarily, but
you prefer the term neurodiverse,maybe even on a sonic level.
(20:31):
Know, it sounds good.
, and it made me think aboutthat word because I'd been
struggling what do you say?
Is it neurodivergent?
Is it neurodiverse?
And getting it wrong all the time.
Neurodiverse lands as opposed toneurodivergent, which I think you
may be explained at one point.
GR-Gary-AutisticRadio.com (20:51):
I don't like the word autistic 'cause it strikes
me as a sharp and stabby word, whereasI like the word autism because it's a
smooth, silky word and neurodiverse isa smoother word than neurodivergent.
I dunno why.
That's just the way I think
Jules-AutisticRadio.com (21:09):
I find it interesting that the autistic
community wish to standardize thelanguage as a political statement.
And I think there'sbenefits in that when there.
When they're actually dealing from thebackground of them being a minority.
But language is also personal andlanguage is an expression of a person.
(21:34):
The way somebody's accent orthe words they choose should
be allowed as their palette.
How they want to paint the world.
, now if we take the wordneurodiverse, people would say that
the concept of neurodiversity isthat the hanity is neurodiverse.
(21:56):
There's everybody is a differentpart of a version of hanity, , that
it's all different and we're allneurodiverse because the actual
difference between us is neurodiversity,but that we can then take a group and
we can say they are neurodivergentfrom the average, from the main.
(22:17):
That doesn't make logical senseeither, because if we are all
neurodiverse, there is no main.
You know, so in some ways whynot use the word neurodiverse
if it feels better, if it soundsbetter, if that's the way that it
communicates to somebody that youare part of the autism world, fine.
(22:40):
But people will shout you down for it.
Harry-Autistic-Association.org (22:42):
The next post is from Life of an Autistic
Jules-AutisticRadio.com (22:46):
Mom,
Harry-Autistic-Association.org: which is a non-governmental (22:47):
undefined
organization and displayed as welcometo our secret world of autism.
Here we educate, motivate each other,and spread autism awareness, and
we also share our family lifestyle.
Welcome, enjoy our little worldof peace, love, and light.
And what they've shared is thefollowing quote, autistic people
(23:09):
deserve compassion, not pity.
They require love, understanding,acceptance, and support.
They'll excel as lawyers,doctors, and teachers.
I
Nicola-AutisticRadio.com (23:21):
mean, it sounds really nice, but it's
like in the UK the stat say
that about 22% of autistic adults arein employment according to the data
from the Office of National Statistics.
Like sometimes there's thisoh, autism's not a disability,
and I'm like, what's going on?
Because.
I find being autistic pretty likedifficult and it's, yeah, there's
(23:45):
societal like issues like in dealingwith other people, but there's
you know, sensory issues as well.
Like it's not just this.
Easy thing to live with and, oh,you're just gonna be a doctor.
Oh my gosh.
I don't think you'd wantme to be your doctor.
Quite honestly I feel like you'dwant a doctor who is a lot steadier
in a lot of ways, , and unable tolike, you know, think a lot faster.
(24:09):
So, I don't know, it just doesn'tseem very realistic to me.
But like I know thatautism's a very broad spectr.
Raymond-AutisticRadio.com (24:15):
You might be a different type of doctor, but not even
a doctor, like a health person, you know,I mean, all these state kind of, roles,
are formed by, you know, the conditions.
But there are variations on these things.
These needs are there, but, . I mean, justimagine there wasn't an organized state.
(24:36):
There'd still be peopledealing with health.
And I think you have experience,don't you, of, , looking
at alternative therapies.
, the law I suppose is maybe be a differentmatter that could get quite deep here.
Condition, there's that word again.
(24:58):
'cause we've beenthinking about condition.
It's you know, if you have sayan allergic reaction to things,
there's nothing wrong going on.
It's the body's justresponding to the situation.
And so if your condition makesyou unable to a certain extent
to tolerate or work with theprevailing conditions of employment.
(25:20):
What is expected of aso-called normal life.
, there's nothing wrong there.
That's just what's going on.
And, you have to worka kind of compensation.
Nicola-AutisticRadio.com (25:32):
I mean, I feel like I would probably be
able to like, help somebody accepttheir death, but I don't think like
mainstream medicine would be like aviable career path for me, really.
, but I.
Yeah I just think I've just got too oldto be able to be like idealistic about
like how we can just make the world greatby thinking about it better, you know?
And there's an awful lotof stuff that's way beyond.
(25:55):
Somebody who's just getting on in theirdaily life's ability to sort of change.
And , I think there just can belike a crippling amount of pressure
when really like just trying tolive like as well as you can day
to day is like quite a good goal.
But I could be, that could be aparticular perspective that hopefully
(26:15):
not a lot of people have to adopt.
Raymond-AutisticRadio.com (26:18):
I think a lot of people are responsive to little
victories in life, you know, and are awarethat, , there's a huge experience in life
out there that is sometimes beyond us.
And, , you know, what you weresaying there about helping accept
death, it's one of the mostfundamental aspects of that 'cause.
This is a society that fearsthat and has built a whole
(26:40):
society on fearing that reality.
So, if we don't get too deep on thatone, there are things that make it
less easy to be idealistic as youstated, , about achievement say, and
ambition and desire, and these thingsthat are expressed in this post.
I think just to bring it backto the post, I think that's what
(27:01):
we're trying to work around here.
Harry-Autistic-Association.org (27:04):
The Post, , is from a US perspective, and I think
what, from my position, from what I see,is trying to counter all the negative
kind of spin that's going on autism atthis particular moment politically and
socially over in United States of America.
So I'm getting that, but it seems it'sgoing from one extreme to another.
(27:26):
Some people reading that itmay kind of take them aback.
I mean, just think of my own life itself.
I was never going to be a doctoror a lawyer or anything like that.
I know what the post is trying to do.
It's trying to say, don't belittle people.
Looks what?
Look what autistic people can do.
And I get that.
Seems that's a quite a kind of strongand quite intense thing for many
(27:50):
autistic people will read from that.
And if they feel that they have not wentto that stage, like becoming, even getting
a job, they're thinkingtheir failures in life.
They're not, it's just the waysociety doesn't fit with autistic
people either for in the US or the UK
Jules-AutisticRadio.com (28:07):
or anywhere else in the world.
I think Harry, , it's a very good ideathat you pointed out the context of
where this person's speaking from.
, if you look at.
The webpage that goes with thepost, you'll be confronted with
a very different community, , anAmerican community, a community
(28:27):
mostly based around people of color.
, people from different ethnicbackgrounds that are not white.
So it may be that within that community.
This person is speaking in an appropriateway for them because they are fighting to
advocate for their child and also reachout to people like themselves that may
(28:54):
be told that autism is a curse on them.
So yes, the meme is a bit black and white.
It is a bit, we can becomelawyers and doctors and teachers.
I'm a frighteningly intelligent personand I'm not a lawyer, a doctor or a
teacher, and I'm never gonna becomeone, and part of that is my autism.
(29:14):
, there are so many other things you can bein life than these highly valued positions
Raymond-AutisticRadio.com (29:20):
are these highly valued positions normalizing.
It's just an impression I get.
I mean, I'd take on board theexplanation you've given about the
intersectional basis of the poster.
Nicola-AutisticRadio.com (29:32):
Yeah.
, We were talking about the Asperger'sword, and it's linked to nazi doctor and
how like it was this idea that, you know,these children are possibly gifted to
special children and they can be saved.
And it's this kind of, I dunno,like I hear you what you're
saying, Jills, but I also just Ifeel like it's max of that same
(29:58):
bad attitude.
, autism and, you ability and the kindawork that's valued in our society.
And, but then there's another side of itas well you know, perhaps with supports
with accommodations you know, . We canachieve quite different things, but
then that's really gonna change society.
If then there's gonna be have to bewhole swats of people whose jobs it is
(30:21):
to meet the needs of certain people sothat then they can do X, Y, or Z. So
I don't know, it's, we're going deep.
Jules-AutisticRadio.com (30:31):
This person's working in a society.
Which is constantly pathologizingtheir children and their kids.
So they're doing what anawful lot of autistic people
themselves do in their advocacy.
They say, fuck you, you know,they say We can be this.
, It's an exaggeration, it'sa push out in one direction.
(30:53):
I mean, if you look at their website,it's got puzzle pieces all over it.
It's got pathologizinglanguage all over it.
, but on the other hand, it's notAutism speaks, , it's not a BA
old fashioned a BA with kids.
Receiving electric shock from backpackslike the Rothenberg Center it's almost
(31:14):
as, you know, it's almost allowable onthe basis that they are doing some good
to increase people's self-esteem, , withall the caveats that everybody else says.
I don't think I disagree withanybody else's words here.
Somebody's put somethingvery important in the text.
They say, I worry aboutneurotypical normative expectations
(31:37):
amongst the autistic community.
I worry about that too.
This organization has that plastered allover it, but the alternative is no hope.
Pathology, and they're behind thecurve, but they're moving away
from, our children are fucked.
We just have to treat them like.
(31:58):
Children for the rest of their livesand they will never progress beyond.
Raymond-AutisticRadio.com (32:02):
Sorry, Joseph, is that the alternative to
neurotypical normative expectations?
I don't know.
I just
Jules-AutisticRadio.com: want to be forgiving. (32:08):
undefined
I. About people that are perhapsmisguided, but trying their best, , that
are making an incredible effort totry to say to the society around them
that there is potential in their kids.
And if they do that with an exaggerationof normal expectations, I'm willing
to forgive them for it because theyhave expectations for their kids.
Raymond-AutisticRadio.com (32:33):
Yeah, for sure.
, My concern is just that, , seewe're all conditioned in this way.
I'm there too.
I'm conditioned to haveneurotypical normative expectations.
That's the society we live in.
It's very difficult to even experiencethe alternatives, which are to not have
neurotypical normative expectations.
(32:54):
It's hopeless.
I. Creative, but
society doesn't afford spaces for that.
And I see that as if anything,the kinda work that I can do
Jules-AutisticRadio.com: in this community. (33:08):
undefined
I so agree with you, Raymond.
I so agree with you.
You know, it kind of hurts meto say it when I say they have
expectations for their kids.
It's yeah, you know, they might not be onthe road towards getting their children to
accept exactly who they are necessarily.
And they may have these ideasthat they should be normalized
(33:30):
, but they haven't given up.
, and I'm just willing to forgivethem for not having given up.
And you are one of the peoplethat can move to that next stage,
but other people maybe have to gothrough other stages before they get
Harry-Autistic-Association.org (33:44):
there.
I believe if this was shared from someonein the uk, the language was changed.
It wouldn't be lawyersand adults and teachers.
It be more about.
They
could be musicians, they could beartists, they could be writers, which
seems more realistic and maybe lesspressured than the wording that was put
(34:04):
across, but still has the same sentiment.
So I totally understand what's beingsaid, what's been shared as well,
and whereabouts in the journey this
person is, and where they live, of course,and the cultures that they live within.
And how we all feel about it.
It just shows you how fast it is.
How different it can be withincountries like the US and the uk,
(34:24):
which can differ quite a lot of
Jules-AutisticRadio.com (34:25):
things.
If we appear to be denigrating theexperience of mothers of autistic
children, we will do ourselves adisservice because there's a real
prickliness, there's a real who'sin the right camp thing going out
there in all kinds of ways in autism.
And we would want to support parents.
(34:49):
. We would want parents to feel as thoughthey could converse with us, speak
with us, listen to us, and not comeacross enormous amounts of criticism,
but us be part of their support.
, and that's the only way that.
As these children develop and go onand build their own self-esteem and
(35:11):
their own sense of identity, it's ownthe only way that, that they will have
access to further ideas away from whatthey've been brought up with is if we are
not a scary against version of autism.
Harry-Autistic-Association.org (35:25):
Thanks everybody for taking part tonight.
That was a great discussion.
A special thanks to the people who sharethese posts that give us the topics to
discuss, which is very much appreciatedand it does create and demonstrate how so
many things can be talked about throughthe topic of autism and autistic life.
So this is Harry's Facebookfor Sunday, the 18th of May 25,
(35:49):
which is part of Spectr Voicesconversation, which is sheer.
5:55 PM to 7:30 PM UK time and on FacebookLive and YouTube live and other platforms.
And we're here every Sunday and I lookforward to doing the same next week.
So thank you once again andI'll hand over to Jules.
Jules-AutisticRadio.com (36:07):
Thank you, Harry.
That was an emotional experiencetaking part and, . You sharing
the things that you shared.
Thank you very much for thework that you do for us there.
Autistic Association supports autisticradio and we open a meeting in the open
to discuss what we do and how we do it.
At this juncture, I alwaysspeak a little bit about.
(36:29):
What we're doing here at AutisticRadio and how it is autistic
association, the entirely autisticcharity that we set up ourselves that
supports the work that we're doing.
One of the things that we do is we reachout when we are invited to conferences.
We were.
(36:50):
Represented at the UK Society for BehaviorAnalysts in their annual conference in
the spring, and we have just completed apresentation of the autistic radio model
at the main PBS Positive Behavior SupportConference in Newcastle just last week.
(37:10):
And what I presented there.
With the help of my colleagues hereat Autistic Radio was the concept that
the way they as professionals inviteus to fors, invite us to focus groups,
to hear what we think and say isn'tnecessarily the best format for us.
(37:30):
And so I presented theautistic radio model.
A way of having a safe space wherewe ourselves felt as though we were
not overwhelmed by the neurotypicalexpectations, where we can do it from
the comfort of our own home off camera.
And we are allowed to speakquietly and we are allowed to
(37:51):
pause while we are thinking.
And there's no need to fillin all the gaps amongst other.
Features.
I believe that some ofthe people there got it.
Because many people found me duringthat conference and they made a special
effort to tell me things like I was bravetaking part in conversations that other
(38:15):
autistic people were unwilling perhapsto take part in a, BA and they also
respected that there was a differencethat we needed when we communicated.
Overall, we got a lot of performance abouthow well we do at autistic radio, but.
(38:35):
Those of you who have been advocatingout there for a while will also realize
that it's the behavior that matters.
And so just being told you're doing verywell has to translate into behaviors and
actions from the professional community.
We will watch this space.
Part of what we do has got theattention of one of the main charities,
(39:00):
the charity called Scottish Autism.
I can't say that Scottish autismhas welcomed the individual voice
of the autistic community, if that'swhat we are, our independence.
As opposed to reliance on them isa little bit frightening to them.
However, we have received a grant fromthem and the grant was received on the
(39:23):
basis that we would have more studiosout there and make it more accessible.
For people to, to join in on whatwe do here on autistic radio.
So as an open meeting now, I wantthe guys to kind of come with me and
discuss what we should spend thissmall amount of money, this two and
a half thousand pounds we have atthe moment, , to spend on equipment.
(39:47):
What's the feelings ofthe priority of the group?
Harry-Autistic-Association.org (39:50):
Well, I think, , there's an opportunity there
to get more people involved, but thething that I'm always kinda wary of is
the stipulations of what the grant isand what they mean as other studios.
Are they talking aboutequipment like we have just now?
For instance, I have my own studio doorin my living room because I've got the
equipment to, you know, and the computers,et cetera, to do what I'm doing just now.
(40:14):
Is that what they're meaning or arethey meaning another place for people to
Jules-AutisticRadio.com (40:17):
go to?
When they asked me to do alittle application form and I put
down that we would spend it on.
Mobile or microphone studios thatcould be out there for people to use.
, and I'm aware that some of themembers that take part, , their
equipment is going to be outta datesoon because it's on Windows 10.
(40:41):
, so from my point of view, mysuggestion would be that maybe we
should get a good deal on some.
Laptops and make sure that everybody isgoing to be able to join in and continue
to join in before we add extra studios.
Who out there is stilldealing with Windows 10?
(41:02):
, I think Lucy is, , I think GR has aproblem with his machine at the moment.
, I don't know about Nicola.
Maybe Nicola has a problem.
, and maybe even it wouldbe a good idea for.
Raymond to have an alternativeto the tower computer.
He's using.
I, what do you guys think,
Raymond-AutisticRadio.com (41:21):
Jules?
I'm on a laptop.
Sorry.
Windows 10 expiring.
Nicola-AutisticRadio.com (41:26):
My laptop is a refurbished secondhand thing that I bought
off eBay, so I have no idea how old it is.
, it's a Chromebook and what any.
I'll get that informationto you another time
Jules-AutisticRadio.com (41:40):
harry, what do you think about this?
, I'm just listening to what we've gothere and I'm guessing that we've got
at least three people, maybe fourpeople out there whose computers are.
Going to be outta date veryquickly and maybe we should be
updating those and providing thosepeople with this new equipment.
Harry-Autistic-Association.org (42:01):
I'm totally happy with that, considering
the people we're talking about havebeen involved and they've been very
committed in the last while, youknow, taking part, doing things,
and . Wanna take care of that firstbefore moving on into anything else.
So I'm a total gamer because we know howfast computers and equipment can go out
of day because of the way they're set up.
(42:22):
So if there's a way of gettingthem updated and the money
is available, why not use it?
Jules-AutisticRadio.com (42:27):
So I'm glad we had this short
conversation out in the open.
, it looks as though offline.
We'll have a discussion and see whatwe can do to make sure that everything
that we're doing here at Autisticradio is future proof and move on.
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