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Spectrum Voices Conversation presents “Live Unmasked – Sunday 3rd March 2024”.
Facebook sharing and discussion.
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Recorded on Sunday 3rd March 2024.
(Podcast runtime – 45 minutes)

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[00:00:20] Harry-AutisticAssociationSCIO: This is Spectrum Voices Conversation here every Sunday 6pm to 7. 30pm UK time and 1pm to 2. 30pm Eastern Standard Time United States. This is Sunday 3rd of March 2024 and this is the Facebook part of the broadcast. And the first post is from Chris Packham, who’s Public Figure. And he’s known as a wildlife TV presenter and conversationist.

But he’s also known for his autism diagnosis. And based on that, he’s promoting the repeat of Inside Our Autistic Minds on the BBC. On Monday the 4th of March, 9pm, BBC2 and BBC iPlayer. And it’s basically, Inside the Autistic Minds repeats this coming Monday and Tuesday. I immerse myself in the lives of four young autistic people.

Flo, Murray, Ethan and Anton to learn about their own experiences and challenge commonly held assumptions about what it means to be autistic. So, I just thought it’d be good to share that, because I can remember that we’ve kind of talked about it at great length, and we’ve watched it ourselves the first time before, so, so that’s why it was shared.

Any thoughts?

[00:01:56] Jules-Autistic-Radio.com: I think the nice thing is to say that he won an award. And this, this particular program had so many positive responses.

[00:02:10] Harry-AutisticAssociationSCIO: Yeah, what I liked about it was it deliberately went to four different people. Who were obviously, you know, who were totally different from each other. To illustrate the point about breaking down The stereotype for a start and not being over patronizing or anything like that.

That’s the thing that people are always wary of. It’s sometimes patronizing, even though it doesn’t mean to be, but it’s not, it’s trying to be open. It’s sometimes it can be a bit defensive and sometimes kind of sad. You’re going, well, what did you say that for? But you’ve got to remember the audience as well what it’s for.

But I think in the main, it’s very worthwhile watching. Sometimes it’s difficult watching in terms of, sometimes it’s cuts too close to the bone in terms of own experience. I can remember watching it the first time, I had to kind of take a couple of breaks. But that wasn’t because it was bad, it was just because it was, maybe I could say, too good.

You know, it’s just that, you know, it just hit me kind of hard, in terms of, what about the message it was bringing, and how some experiences are quite similar to mine, depending who they were, who Chris was speaking to.

[00:03:23] Jules-Autistic-Radio.com: Yeah, it’s a BBC programme, which means that only people in the UK can watch it directly on the BBC, but we do have under the, Educational Dispensation of Copyright, a version on our website autisticradio.

com where people can, from around the world, can listen to a edited version of the program. Edited to make the sound reduced and that make it more available to autistic people.

[00:03:57] Harry-AutisticAssociationSCIO: The next post is from AUsome Charlie. AUsome. Charlie is an entrepreneur, Charlie Har Association, CIPD. She they also known as AUsome Charlie Professional speaker, HR consultant specializing in neurodiversity and L-G-B-T-Q-I-A plus inclusion.

Charlie is a neuro divergent autistic, A-D-H-D-C-P-D-S-D, and identifies as a queer A-U-A-D-H-D website or sub charlie.co uk and what the shared neurodiversity celebration week was this month. It’s 18th to 24th of March, and it’s a kind of panel discussion. Online, it’s called Neuro Divergent and LGBTQIA plus the Double Rainbow Intersection, and it’s on Wednesday, the 20th of March.

9.30 to 11:00 AM I think, and it’s UK time. What the text explains is AUsome. Charlie is really excited to be invited to chair the new divergent and LGBT QIA Plus Panel as part of the new diversity celebration week.

I look forward to meeting my diverse and awesome panel, A. J. Singh, they/he, Grace Liu, Olly Roscoe, Shazi Tharbey, and Tony McCarverty. And the link provided to access it is on the post itself. And it also says, Neurodiversity Celebration Week is a worldwide initiative that challenges stereotypes and misconceptions about neurological differences.

It aims to transform how neurodivergent individuals are perceived and supported by providing opportunities to recognize the many talents of neurodivergent individuals, while creating more inclusive and equitable cultures that celebrate differences and empower every individual. We are looking forward to sharing our insights about life on the intersection of Neurodivergence and lgbtqia.

Plus, I think this is

[00:06:33] Jules-Autistic-Radio.com: really important. We’re very fortunate in the UK because the l lgbtq community have a certain amount of ability to be heard. Obviously that could always be improved, but there are so many countries around the world where that particular part of people’s identity is. Suppressed or illegal and so somebody who’s autistic who is in post groups who where there’s an intersection for those identities might not get the opportunity to hear and be amongst fellows.

So I think it’s really good that that’s a worldwide access possibility and it’s free. I’m hoping that they’ll also make that as an after the event download. I think they have in the past. So I was just going to let’s hope that

[00:07:36] Liz-ActuallyAutisticAdult.com: that happens. Yeah, I was just going to say last year, I went, I did go to a few of the neurodiversity celebration week things and they tended not to record and have them available afterwards.

So that people could feel free to participate in the event and have their camera on and stuff and ask questions without that, then potentially being available to just anyone on the internet. Oh dear. Which, yeah, it’s always a difficult, it’s double sword. Yeah. You want the stuff to be available, but you also want people attending the thing to contribute and for there to be a discussion.

So it’s, yeah. Anyway, it may change this year. Maybe that’s where


[00:08:18] Jules-Autistic-Radio.com: comes. Yeah. Yeah. That’s where editing comes in, you know, have a live event, but then make the parts of it that are possible to be available, the edited parts available, that really needs to be the thing that’s done for these things.

That would be my new kind of bandwagon, I think, the drum I want to beat is that. It’s great that people have live events and have open events, but the need is out there for people to access edited versions of that improved sound and also have the bits that are more sensitive, but, you know, redacted.

[00:09:06] Harry-AutisticAssociationSCIO: I can understand what you’re saying Julian. It is unfortunate, but I do understand why that approach is done. I mean, it’s about people feeling safe. And even if they’re saying, oh, we’re recording this, but we’ll cut, we’ll edit your part out. It’s just, people still feel vulnerable to that. It’s just unfortunate that has to be, but people get a right to feel safe.

But I do get what you mean though. You don’t even, you’re not walking in their shoes, it’s hard to be too critical, just disappointed, because, yeah, I know what you’re feeling.

[00:09:43] Jules-Autistic-Radio.com: No, I’m not being critical, and I fully understand the reasons for this. What I would like, though, is there to be other, as much as possible, of the other kinds of things that, You know, recorded stuff, stuff that’s recorded and edited and is available to more people after the event, the more of that, the better.

And I know it’s difficult to create it in all circumstances and some circumstances aren’t possible, but just I want more of it out there,

[00:10:17] Liz-ActuallyAutisticAdult.com: you know. That’s probably worth mentioning at this point that we’ve had a discussion. About gender and sexuality, which was edited. I don’t think we edited much out of it, but that is out there on our, is part of our back catalog.

If anybody listening is interested in the topic and wants to hear discussion about that, we have made a recording about that. That is out there available for anyone to listen to.

[00:10:46] Jules-Autistic-Radio.com: Yeah. Just look for the word queer.

[00:10:48] Harry-AutisticAssociationSCIO: Next one. Is through Julian’s hard work. It’s a new podcast that was posted today. And it’s the discussion with Alex Stratikis from Autism Adventures Abroad. Podcast is around 43 minutes long. And Alex is a disability travel consultant used by the tourism industry. Usually we speak to him as a representative of positive autistic identity.

His website, autism Adventures Abroad is about the positives of travel for autistic people. This conversation is rather mixed. One airport experience is used as a good example of practice around hidden disabilities, and another is a tale of missed opportunities. We would love to hear how things have changed the British Airways or

Would be willing to join to make another recording and this is available on the page and also available on our website

[00:11:50] Jules-Autistic-Radio.com: yeah, I’m not expecting either British Airways or Heathrow to respond to that in any way shape or form but Alex is going to Forward the podcast to the public relations parts of both of those companies with which he had a negative experience And also to our local airport, Edinburgh airport, which was created a very positive experience for him.

So making a recording and then sending it direct to the public relations part of the disability parts of those organizations and the people that are trying to change culture and make the sunflower lanyard something that means something is something that he’s trying.

[00:12:43] Maurice-ELAS-Autistic-Group: Had the facility at Edinburgh it before Covid. I’m not fluent since more recently, but there certainly, course asymmetrical that guess

start of the journey, not the other end, but yes, it’s, I’ve got something

Glasgow seems more passive wearing the lanyard, but the lanyard is a

[00:13:08] Liz-ActuallyAutisticAdult.com: good thing. I think the whole scheme started at Gatwick Airport, didn’t it? That’s, that’s where it originated. So I remember my dad having a sunflower lanyard. He had Parkinson’s and one of the things that he struggled with most was freezing.

So he would stop walking and then not be able to start again, especially if there were people cutting across his path or what, moving around him, he would end up freezing. So they had a sunflower lanyard for him. And. The staff there were great. They understood that it meant, okay, don’t have a go at this guy.

He’s not acting strangely. There’s obviously something, you know, something that he’s struggling with. And then I borrowed it when I flew to Belfast in 2018, I think. And the staff at Belfast Airport were fantastic with it. I didn’t, I wore it on the way out at Gatwick. I don’t know if there was a way to bypass duty free, because that’s just sensory hell.

It’s like being bombarded on every level. But on the way back, there was, I think it was the first traffic jam they’d had in Belfast for about 40 years, according to the taxi driver. So I was massively stressed when we got there. And I was not in a good way, but I was wearing the sunflower lanyard and the gate staff just saw it.

They took one look at me and they were like, right, , we’ll sit you down here in a separate corridor away from everyone else. I was just sitting there trying not to have a full blown panic attack. I was just left to it. I was with my boyfriend at the time. I wasn’t, I’m not saying they just left me alone, but they could see I was, I didn’t need anyone crowding me.

I didn’t need anyone fussing. I just needed space and quiet. And that’s exactly what they gave me. So I’ve had good experiences with it. I think it started at Gatwick Airport and it kind of spread from there because of the need for people not to be approached and accused of all sorts of nefarious things in a, When they are just struggling with a hidden condition

Justin wants

[00:15:12] Jules-Autistic-Radio.com: us to know that he has in the past and he also. Where will wear in the future his sunflower lanyard and he also says proudly with a thumbs up and a smiley face and a sunflower so it’s. Possibly a bit of an identity thing that

[00:15:33] Harry-AutisticAssociationSCIO: could be useful yeah it could be can be i mean. I haven’t been in an airport for a long time, before Covid actually, or just before it, Covid.

Going on holiday, going to Spain for the first time, with my brothers, and it was the first time I’d been on a plane for about 20 years, because it’s just not my, it’s not the plane, it’s just, it’s not my ideal of going abroad, it’s just not something I do. I’m just someone that likes to kind of stay at home and stay kind of local.

And I just find the You know, that type of travel, you know, the airport and all that, quite intimidating, because it, you know, very security conscious, and I can understand it needs to be, but it’s just the atmosphere, and, then again, if it wasn’t even like that, you know, there’s a lot of people, there’s You know, noise, lights, sounds, you know, things that get sensitive.

And it was about 7 o’clock in the morning, and I was up all night, just the way that the flight went.

But it’s just that travelling, the thought of travelling alone doing that is quite intimidating. You know, I think it was a bit better because I was travelling with people. But I’m always in awe of people that, autistic people that can actually travel, you know, alone. Especially through airports and then going to other countries, especially now, and the way things are now.

Not just going out, but coming home as well. It’s like, don’t act too nervous or the, the airport security will pull you up. You know, what are you up to to by acting suspicious. And if I had that sort of thing, it’d make you worse ly, you know, these big security people. But it’s good. There’s some things in place to combat that, although more work can be done to alleviate it in other places.

The lanyard thing’s a very good idea for a lot of people.

I don’t know

[00:17:44] Jules-Autistic-Radio.com: if it’s spreading around the world. I had a sense that maybe Canada had adopted it.

[00:17:51] Harry-AutisticAssociationSCIO: Moving on to the next post. This is from Little Puddin’s education website. I’m a autistic person from Ireland, Dublin. Little Putins prince.com and they’ll share the picture and it’s called Do Not Tidy My Autistic Safe Places.

Amanda McGuiness from Little Puddin’s. And what it says, it’s got a picture of someone sitting in the colourful corners basically saying do not touch my things. And what it says, there’s a wee list of it is, I see order in what you see as chaos. It helps me to feel calm. It is part of autistic culture. Each item is so meaningful to me.

It doesn’t have to make sense to you. It is very meaningful to me, and if you disturb the order I’ve created, I will become distressed. And the text at the bottom just basically says, it just sums it up a little bit, it doesn’t have to make sense to you when you see autistic people safe spaces, it only has to make sense to them.

So don’t touch.

[00:19:19] Maurice-ELAS-Autistic-Group: The possibility of any number of teenagers not being diagnosed young, being autistic. It intersects both those groups and there’s , such a stereotype image of teenagers and that this argument applies. Because it’s just personal liberty arguments that

the autistics help them as well. This make a. A liberty culture, not an own good culture, which is not in fact good,

in a way you know everything is, Guy and Fife said, and there’s a group there.

I’m glad this has been said for a population group which being in the of liberty will make the case that that level of first and then, let’s say,

[00:20:17] Jules-Autistic-Radio.com: extend it from there.

I think it’s very easy for people who don’t understand us to think it’s a mess when there’s a certain need for us to

have our own mind map of where things are. Moving things around can be disturbing to us and it’s something I identify with. It’s possibly something that’s less important to me as I have grown older, but I think what Maurice is saying about when you were Maybe in your teen years or younger, it was even more intense then.


[00:21:05] Harry-AutisticAssociationSCIO: I do recall this myself. Not in too brutal a fashion. I mean, it was done with the best intentions. It was when I first moved into my own house. Just five minutes away from my parents, and before I was using the internet all the time, my hobby was to have writing pads, and sometimes it was, you know, I used to like writing lists, putting things in order on lists, and, you know, that sort of thing, it was like a great pastime.

It doesn’t make much sense now, because I’ve got other, so many other options now, and I can do a lot of that online. Or, not online, but on the computer as such. But, my mum used to come out of her again and tidy my house. And she’d move the, she would she’d put the notepads away. They were easy enough to find, it’s just like It’s just that, you know, I did say anything bad about it and, and I wouldn’t, it’s just like, you know, I’m saying to myself, don’t just just leave it , I’ve, the house is fine.

It’s tidy enough, it’s my safe haven. I think that’s as it’s like your own home, or if you’re living with your parents, your own room maybe, but your own space somewhere and you don’t want it to be touched, especially teenagers. A bit more kinda, it’s just lit.

Don’t touch my stuff and just move it without telling me or, you know, or it’s just to tidy it up and whether it isn’t really being a mess. That’s what I can sort of identify with that but I know there’s a lot more to it than that. I just thought it was quite a funny kind of memory that came into my head there.

[00:22:50] Jules-Autistic-Radio.com: I think I still experience solidarity.

I still experience this with work projects like if I’m doing accounts and I need to be able to see lots of documents, you know, paper documents and forms and things. I will take over a whole area and have things on desks and floors and shelves and I will have a map of mind where I know where everything is for that period of time.

If there’s a shuffle or a move or a, it’s, it, , my partner’s learnt to just let me get on with it and tolerate that for a period of time. Because it becomes very difficult to me if something was moved about because it would be part of my thinking almost, the position

[00:23:47] Harry-AutisticAssociationSCIO: of something.

Yeah, I can identify with that as well. I can recall when I was at Oxfam. There wasn’t a lot of room in the desk anyway, because of the way it was set up, but if I would kind of leave things at a certain place for me, like if I’m going for lunch, I would put something on the desk and just leave it at a certain part where I’m at, and then I’d deal with it when I come back.

But because of the nature of the The back room, you know, people would, some people would actually take the opportunity to go on the computer while I wasn’t there. Some people would use the desk doing something else, which is fair enough. I just found it frustrating because they moved what I had out of the way to do it, and they didn’t put it back.

Didn’t put it anywhere that I couldn’t see it, I mean, it wasn’t a problem that way, it’s just like It’s amazing the things that, that irk you, even though no one’s doing it with anything, any bad intention, you know, and I never said anything but, just like, just leave it, don’t tidy up, even though they weren’t tidying up, they’re just moving something out of the way so they can do something, or maybe in their head they thought they were tidying up by putting something in a pile, where they’ve got space, so they can use for their job, it’s just,


[00:25:07] Jules-Autistic-Radio.com: Justin’s also put in a text here, following on from what Harry just said. Funnily enough, I used to write lists as well, including top ten lists of musicians, actors, actresses, etc. So I understand where Harry was coming from. I don’t tend to do any more now, but I used to. So There’s a familiarity there.

[00:25:28] Harry-AutisticAssociationSCIO: I found a friend.

That’s, that’s good. I thought, that’s the same sort of thing I had done. It was like top ten stuff and sometimes, I know this is going to sound stupid. The , things I used to do, I actually used to make up bus timetables. I mean, I create a bus timetable. For a route that doesn’t exist. It was like, see if I was in charge of it.

Because I was very fascinated by buses. Lamp posts as well, as I said before. But buses I was fascinated with and I always found that bus services were poor. And I thought, if I was in charge, this is how I would do it. It’s just weird thinking that now. But it was good fun.

[00:26:13] Jules-Autistic-Radio.com: I still do something that’s a bit related to what you said you used to do, and I still do it.

It’s kind of a mental stim. I plan trips that I’m never going to take, like if I need to de stress or if I need to sleep maybe, or I don’t know why, I just, sometimes I just find myself doing it. And I would use a website like Skyscanner and I would work out how to get around the world without spending more than a hundred pounds on any single flight or something like that as an exercise

in just working things through, you know, and seeing,

[00:26:56] Harry-AutisticAssociationSCIO: I don’t know, it’s,

[00:26:59] Jules-Autistic-Radio.com: yeah, there’s something about filling up your mind space

[00:27:02] Harry-AutisticAssociationSCIO: or something. I think it’s just progressive kind of mindset, because something, even if it’s not something that’s going to happen, it’s just something you’re preparing for, or it’s just like, I don’t know, filling the mind in a positive way.

Because in a lot of times when I did do, it was, when I was doing that, it was like, trying to take my mind off, you know, harsher things. Because , as we know we can sometimes go over things or regrets and things that have happened to us in the past and that can really kind of take over and make you feel so miserable.

So, things like that, which make, may make no sense to a lot of people, does make sense when, when you compare to what you would be thinking about.

[00:27:56] Jules-Autistic-Radio.com: Yeah, I think that de stressing part of it, or avoiding other things, or keeping things that might otherwise be intruding, you know, pushing back intrusive thoughts, maybe.

That works for me as a way of

[00:28:08] Harry-AutisticAssociationSCIO: linking it. The next post is from Diary of an AutisticMom. Personal blog, just a mom, blogging about her daughter’s journey with autism. And, it’s just a personal reflection, experience, so I’ll just read it out. My thoughts when thinking about leaving my daughter in someone else’s care.

Will they be able to understand her, like, when it comes to her lack of communication? Will she be safe and keep her from running off? Will they know how to help her when she becomes frustrated and has behaviours they can’t control? Will they lose their patience with her? Will they treat her as if she’s being a bad child?

Can they handle her when she needs sensory input? Will they make sure she isn’t putting random objects in her mouth that don’t belong? There’s just so many to name. The thought of it makes me never want to leave her side. Very powerful. Other thoughts?

[00:29:28] Jules-Autistic-Radio.com: I don’t know.

[00:29:29] Maurice-ELAS-Autistic-Group: Being a parent’s overwhelming, and the thought of it’s overwhelming. And when you don’t want parents to be over smothering us, and the world’s full of, full of

reasons not to have got into it.

It’s the anxiety, isn’t it? The anxiety strand and the uncertainty strand, not instinctively certain, the odds in situations.

She ought to leave, does she ever have to leave them in someone’s care? Who might do those questions in the middle about

treated as being bad. Will they know how to help her? No. They know how to help her. Has she, does she ask them, can she ask them before? Of getting into the situation.

[00:30:22] Liz-ActuallyAutisticAdult.com: I can relate to having those concerns, not as a parent, but as a, actually as a child about my parent, worrying about dad going into, he had to go into a, what would you call it, nursing home at one point. And we were all concerned, because at that point, he was, he was, he was, he was, he

He wasn’t really understanding English. If you spoke to him in French, he wouldn’t understand. French was his thinking language. So, in order to respond to instructions in English, he had to first hold that thought, then translate it into English, and then effect an action. His English, by that point, was incredibly scientific in nature.

So, if you needed to get him to lift his foot up, To put a shoe on, you had to say, please raise your leg. Cause if you said, lift your foot up, he would just lift the toes off the floor. So you had to be very precise. You had to know exactly how to phrase. whatever you were saying to him in order for him to understand it the best.

Or if you could say it in French, say it in French. And just understanding the non verbal behaviors and all sorts of things that we understood as a family because we knew him so well. And just the worry of, will they understand what that means? And will they then misinterpret him not understanding something as a cognition issue when it’s in fact just a translation issue?

And it was really scary. Place to be emotionally because you can’t turn off the caring about somebody when you’re not physically able to be there. I mean, this was 2021 as well for two weeks, he was allowed no visitors. It was really tense time, you know, worrying about whether his needs are being met properly.

And I mean, the staff are fantastic. He did everything they could, but it doesn’t stop. You as the person who is in the position of caring, it doesn’t stop you worrying. I can only imagine what it’s like when you’re the parent and it’s your child that you’re worrying about.

All my sympathy.

[00:32:34] Harry-AutisticAssociationSCIO: The next post is from Life in an Autism World. Who’s a writer. Page run by Autistic Person. Life in the Autistic World on Instagram for more content. And what they’ve shared is it’s like a comic book, and it’s showing, it’s like two panes like in a comic book, and it’s showing like two buttons.

One button is have a routine, and the other one is be spontaneous. And it’s leaving the person sweating. And what I’m relating to this is Maybe having your routine is boring, but being spontaneous might sound a bit exciting. It would, it would certainly make me sweat, because I’ve done that before and it makes me very uncomfortable as I’m that used to it with routine.

I just wonder how others think about that one. Well yeah,

[00:33:28] Maurice-ELAS-Autistic-Group: any form of

divergence of options has to be weighed up. And choices from the menu can be just as slow, even when you’re with someone, even when it’s with Stella. But you have two autistic people still couldn’t speed up even though we understood what each other were struggling with. I, I can

[00:33:57] Liz-ActuallyAutisticAdult.com: see a bit of a sort of AUDHD thing in here, like the, so ADHD and autistic and the ADHD part of your brain is going, Oh, we do this every day.

I’m really bored. I want to do something different. And he’s dopamine. Come on, let’s do something spontaneous. And then the autistic parts going. What? Are you mad? We can’t do anything spontaneous. We need to do the routine. Otherwise, everything will fall apart and yeah, it’s Yeah, I can see why the guy’s sweating in the in the meme because it is a bit like that thing It’s like what what I found is I have to Get the autistic part of my brain to have a word with the ADHD part and point out the ADHD part that it functions best when there is a routine and we’ll do a spontaneous thing, but within the confines of the routine.

So we’ll go for a walk, we’re doing the walk that we were going to do, but we’ll go a different route. We’ll just go out of the door, we’ll start walking and we’ll see what happens. And it’s like making a little compromise between the different parts of my brain that are sometimes in agreement with each other and sometimes.

They don’t get on so well. It’s like having a cat and a dog that are constantly fighting, but occasionally they’ll cuddle up and have a little nap together, you know, two parts of the warring factions of your brain that occasionally get on.

[00:35:23] Jules-Autistic-Radio.com: I just don’t like the word spontaneity. I just, I don’t, I like to do different things.

I like to have an idea, but then I like to plan it and organize it. I don’t. Like this idea of, oh, let’s just go and do this because of all the other things that go with it. So spontaneity, no, change fine, but spontaneity, just no, I don’t want it. And that’s not the opposite of routine to me. I like my routines and I like to know how things go and I like to do things in the right way.

I don’t know. People can keep their spontaneity as far as I’m concerned. The

[00:36:05] Harry-AutisticAssociationSCIO: next post is a new podcast sharing, and it’s the sharing podcast from two weeks ago, sharing a Facebook post, and there was contributions from Tony Atwood, Autism Support Community, Autistic Early Support, Autistic author Torin Kairns, and NeuroDivergent Rebel.

And the podcast run time is 43 minutes, so if you’re interested you can have a look. It’s available on Facebook page and on the website. .

The next post is from the actually autistic coach. Shared this stuff before. Personal coach, I empower my fellow autistic people by working to uncover and unmask revealing our best selves.

The AutisticCoach. com

And what it’s saying in the text itself is did you recently understand that you’re actually autistic? Are you still exploring the possibility? My workshop is made for you. We explore what autism really is, how to advocate for ourselves, practice self care and much more. And it’s under as pay as you can.

And just to send a message for details. For what, I’ll go into the, the actual post in terms of what was shared. Called a workshop for autistic humans. Newly identified, learn about autism, masking, unmasking, meltdowns, burnout, self advocacy, connect with fellow autistic humans, shared life experience, and these events are on Tuesdays, March the 5th, 12th and 26th, and April the 9th and 16th, it’s 5. 30, UK time. And it’s led by Matthew, the Autistic Coach. What do people think about this? Because he has shared stuff before that’s been quite, you know, positive.

So this is one of his most recent ones.

[00:38:25] Liz-ActuallyAutisticAdult.com: I think I’ve said before that the most useful things I’ve learned about neurodivergence have been from my peers, from the community. Because I’ve been able to relate to them a lot more, relate to the people saying it and relate to what they’re saying as well.

There’s undoubtedly, I found some very interesting stuff through reading more sort of medical academic stuff. But what’s actually made a difference in my quality of life has been what I’ve learned from other autistic people and not from a book or a course or a research paper. Although I do read those too, just because I’m interested in it from the kind of academic geeky angle.

I think if I was, if I went back, well it’ll be six years this year, if I went back six years. I would probably be going, Oh, this is exactly what I need from somebody who’s, who’s living it. I mean, I was a tutor on a course for adults with long term health conditions. And all of the tutors were peers.

We were all people with long term health conditions who had also done the course as participants. And it’s that peer to peer learning that actually is very effective for learning proper life skills and strategies and learning it from people who get it. So there’s this thing called white coat syndrome, and there’s so many definitions of this, because every time I hear somebody use those words, they mean something else.

But white coat syndrome in this context is that if, you’re diagnosed with any sort of health condition, let’s say arthritis, because I’ve got that one too, and the doctor says, well, you know, if you just did yoga, you’d find that would strengthen your joints a lot. And you think, yeah, but what do you know, mate?

Because you’re like, you don’t have this, you don’t live with this. But if somebody else who lives with your condition or somebody else who understands or has similar condition says, actually, I found yoga really helpful for strengthening my joints, people are much more likely to be open to hearing that from somebody who is equal to them, not somebody who’s talking down to them.

If that makes sense. God, now I’m thinking about that Monty Python sketch. John, please. And Ronnie Barker and Ronnie Corbett. Yeah. Is that peer to peer learning? That’s actually really effective.


[00:40:42] Jules-Autistic-Radio.com: What strikes me is that this would have been a good starting point for the work done by the autism network when they were trying to work out a way of producing a program for. Late diagnosed and adults with autism, this would have been a good bit of research for them to have started with and take an example from to create the program that they have created because they’ve gone from.

Their experiences, autism professionals, this guy is like, this says bringing in the actual experience of the people. So it’s including the autistic sensibility right from the beginning in the delivery of the program, in the design of the program, right at its inception.

[00:41:44] Liz-ActuallyAutisticAdult.com: I was just thinking that I’m just reading the criteria and I don’t know whether the actually autistic coaches is a CIC or nonprofit.

But apart from, you know, that sort of legal status bit, I would say that that project meets all the other criteria, you know, autistic people involved in the development, design, and delivery, because it’s by an autistic person, it’s strengths based, well, That’s, as we discussed, kind of a muddy, vague statement, but you couldn’t say it’s weakness.

It’s not a deficit based thing, certainly. I don’t know whether it does work in partnership with other stuff in Matthew’s area, because I don’t know where he is, but it certainly meets the first criteria completely. See, it’s much easier to apply them to something that exists than to use those criteria to design a service.

[00:42:35] Harry-AutisticAssociationSCIO: But yeah. It’s just great, it’s, I mean, that, yeah, it’s great, that kinda ties in with what we’ve been talking about, it’s just great to see something like that existing, you know, the You know, the opportunity to share, to work together, to learn from each other, and not to be patronised. I mean, that’s always the fear that I have, is being patronised or feeling patronised, even though there’s no intent in there.

And I’ve been kinda ultra defensive about that in the past, even though someone wasn’t doing it, but it seems like they were. And it’s about people who are newly identified as autistic, so It’s good that it’s there, it looks friendly. It’s going to talk about quite, you know, quite deep stuff, you know, like Burnouts, it’ll talk about self advocacy and it’ll talk about meltdowns as well, which is quite brutal.

It’s quite intense. So it’s just good that it exists and there’s opportunities for that. And as a good example of something that can work. From the outside anyway, from what we can see so far. Yeah, we don’t

[00:43:50] Jules-Autistic-Radio.com: know the quality of it, we’re, but we are guessing.

And we’re making assumptions that it’s a very good thing. I just think about from the money point of view. At the bottom, the guy is asking for little donations, you know, little scraps of money, a little bit like a GoFundMe page, and you compare that to what’s actually happening elsewhere, and that’s an individual, actually, autism professional is receiving thousands of pounds directly from the taxpayer, whereas this actually autistic person Guy is probably going to reach more late diagnosed people and more autistic adults with better high quality material

[00:44:42] Harry-AutisticAssociationSCIO: than the

[00:44:42] Jules-Autistic-Radio.com: professionalists.

It feels to me as though there’s a theft going on from the Taxpayer when that money could have been allocated in a towards something like this.

[00:44:58] Harry-AutisticAssociationSCIO: Well, that was a great conversation tonight Thanks very much for everyone being involved, we went through quite a few things, quite a few topics, quite a varied, discussed items, you know, organisations, individuals.

So this is Spectrum Voices Conversation, here every Sunday, 6pm to 7. 30pm UK time, and 1pm to 2. 30pm is a standard time in the United States. So thank you again, and we look forward to doing this again next time.

So goodnight.


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