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[00:00:19] Harry – Autistic Association SCIO: All right this is Spectrum Voices Conversation. Here’s UK time, and it’ll be Sunday 1pm to 2. 30pm Eastern Standard Time United States. This is the Facebook part of the broadcast. This is Sunday the 4th of February, so we’ll just go through the posts that have been done the last couple of days going into last week.

So, the first one is from Sunshine Support, who are a disability service and award winning special educational needs and disabilities consultancy. And what they’ve shared is about autism in teenagers. The, in the text briefly, they say parenting and teaching teenagers can be tricky. There’s so much at play.

Hormones, changes to learning styles, changes to the complexities of friendship, and so much more. When a young person is autistic, it is even more difficult to support them to navigate their way through these tricky times. So what else would you add to what they’ve got as an infographic. First it says autism in teenagers, every single autistic person is different. But these are common in all autistic teens presentation, according to this graph. So I’ll just go around the points. Taking responsibility for own routine is tricky. Difficulty forming or navigating friendships. School attendance difficulties.

Strong sense of justice. Demand avoidance over compliance or both. Misinterpreting or misremembering event situations. Higher levels of anxiety. Depression. Feeling like they don’t fit in or belong. Difficulty with identity. Difficulty with self care. Vulnerable to bullying. Confused by teen talk. And difficulty understanding non spoken social cues and sarcasm.

I can identify with some of that. Definitely. Yeah,

[00:02:49] Jules – Autistic Radio: me too.

I think positively about posts like this. You know, it’s a SEND organization, isn’t it? Special Educational Needs. Yeah.

There’s one that concerns me because I think sometimes it’s used against teenagers. And It leads to the not feeling believed. And the While I want to be really positive about what they’ve put here, I do. There’s one thing there that sort of jumps out, and it’s this misinterpreting, misremembering events and situations.

And I sometimes feel as though that’s used against teenagers. And There’s a kind of

not being believed, you know, you must have misremembered. Do you see where I’m saying this?

[00:03:53] Maurice – ELAS Autistic Group: Yes, I’d like to know what some medical framework or DSM that comes from. Yeah, where

[00:04:06] Jules – Autistic Radio: is the source for that? I mean, I think all human beings Misinterpret and misremember events and situations. And I think also that is something that happens particularly during adolescence.

Because the brain is very plastic, it’s growing in all kinds of ways, there’s all kinds of hormones going around it. But I don’t associate it particularly with autistic people, do you?

[00:04:43] Harry – Autistic Association SCIO: Autistic, no. No, no, thinking about it, I certainly don’t. Can’t even think of an example. When I think about events and remembering events, it’s actually remembering in great detail and dwelling on it.

Not misinterpret it, but over emphasizing. And sometimes overemphasizing what might happen. So something is actually the opposite. It’s like it’s too vivid, rather than You understand it a bit too much, but you’re making more of it than it actually might be. So, yeah, I agree with you on that one. Yeah,

[00:05:24] Jules – Autistic Radio: I see what you’re saying there.

And I think, as an adolescent, I would feel as though I remembered the event in real detail because it was affecting me a great deal. But then non autistic people, particularly people in power like school teachers would undermine my certainty and my knowledge by saying, You know, , you’re misremembering that, but I feel as though actually they were misremembering because they weren’t remembering in the detail, and that felt unjust to me.

[00:05:59] Maurice – ELAS Autistic Group: Yeah, the overview sort of, yeah,

[00:06:06] Jules – Autistic Radio: facts retained.

[00:06:09] Maurice – ELAS Autistic Group: Yeah. There’s, I’ve come across sometimes there’s a problem with autistic people in care services. More dependent on care having the professional believed instead of them by default when there are issues.

[00:06:34] Jules – Autistic Radio: Well, yeah, that’s, that’s the thing, isn’t it?

Yeah. That’s very much the thing.

[00:06:42] Maurice – ELAS Autistic Group: Power determines who the default goes to

by historic

[00:06:48] Jules – Autistic Radio: habit.

I mean, look, all the other things, I think I’m fairly up with That one is just one of those things that undermines the power structure between the teenager and the SEND consultancy to me. That, sorry, undermine the power structure. I don’t mean that. What do I mean? I mean, it creates a power structure that’s unequal between the teenager and the people who are trying to help the teenager.

Not being believed, and if they say to them, if , the organization says to itself that autistic teenagers often misinterpret or misremember events and situations, that gives them the catch all to say that our reality is not reality. I don’t want to use the word gaslighting.

Someone’s followed some

[00:07:54] Maurice – ELAS Autistic Group: biased descriptions of Facts.

[00:08:02] Harry – Autistic Association SCIO: I do identify with a lot apart from the one you’ve just discussed there. The I do. It kinda brings back some memories and sometimes memories. It feels ridiculous now. Like the self care, for instance. For some reason, I stopped brushing my teeth properly during my teenage years, and it caused quite a lot of problems.

I didn’t lose my teeth, thankfully, but I did stain them. And it’s just like, because you can throw a hard, it’s just like Everything’s such an effort. Yeah, it’s a heart. Yeah, it’s definitely the high anxiety, stress, depression. So a lot of them. School attendance difficulties though, I always would go to school, but it wasn’t because I liked it, it’s because I would feel lost without it.

I mean, I was terrified to leave it, in the end. You know, that sort of, oh, you’ve got to leave school and get into college or university or get a job, which is another topic altogether, but the school attendance I never really had a problem with unless I was really strained and I would refuse to go to school.

Maybe that’s what that’s referring to. Most of the time I did go but yeah everything else.

[00:09:22] Jules – Autistic Radio: I think I would say that almost everything here is the normal human experience, but it tends to be exaggerated in autism, you know?

[00:09:37] Maurice – ELAS Autistic Group: It runs with society. It’s more friction, I suppose.

That’s friction with the autism as well as the teenage. Yeah,

[00:09:49] Jules – Autistic Radio: that’s a good way of putting it. Friction, yeah.

[00:09:54] Harry – Autistic Association SCIO: Moving on to the next one from the autistic teacher. It’s just a quote. . And it basically saying, I can’t remember who it’s actually shared from, maybe the autistic teacher themselves. But it says you should never have to apologize.

For being autistic or doing things in an autistic way. And I’m gathering a lot of people do feel that way, like they’ve got to apologise for the way they are, the way they behave. Although the way they’re behaving is not anything bad, it’s just, it seems to be abnormal in comparison to the so called normal.

Some people are kind of apologising for who they are, basically. Which is, it’s quite hard hitting for people.

[00:10:43] Maurice – ELAS Autistic Group: Such is the difference made by knowing it is an autistic way and finding out and

not hiding it from kids.

[00:10:58] Harry – Autistic Association SCIO: The autistic teacher is a public figure, autistic and proud, sharing insight and understanding to help the autistic community. So, that’s a quote that’s, you know, one of them to You know, sort of inspire, think about, and certainly not feel ashamed.

[00:11:20] Jules – Autistic Radio: I almost feel as though I shouldn’t comment on this. Because, yeah, I get it, and I feel, and I, with the purpose behind it, I’m in agreement, you know, and I think it’s a positive thing and a self supporting thing, and it’s a good post but it leads me on to other things, it leads me on to different things when some autistic people use their autism as an excuse to, frankly, behave rather badly.

It’s not a big thing, but it does happen, you know. And that sort of behavior does make me sad because I think it brings us down as a group when people are a bit take it or leave it, you know, I can be rude because I’m autistic, that kind of thing, and really leaning into their traits. I know that for some people it’s a phase that they go through but yeah, this is a positive post and it reminds people Apologizing for being you

[00:12:31] Harry – Autistic Association SCIO: and that’s a nice thing.

I mean, absolutely. I mean, I do know where you’re coming from as well. I mean, I think I, well, I know that I’ve kind of a responsible For sort of behaviours in the past where it could have been I’ve been a bit better, but I had it in my head. I’ve got autism. This is the way I am, but I know fine well to, you know, like being over opinionated and being in people’s faces sort of thing that I used to be a bit over the top.

In my twenties, and I thought, well, I’m autistic, so it gives me a license to do that, and that’s not true, it doesn’t. Certainly if you know what you’re doing, so I do identify what you’re saying, but as that post itself, there’ll be a lot of people that’ll be within themselves out there, that they’re just, they’re frightened to be themselves in case they’re judged.

And all they want to do is be themselves, because sometimes people, they get the stereotypes of everything, and certainly the stereotypes with autism, so there’s the fear that, it’s like judgement in society, you know, you always get that, and it’s just trying to reassure people that you don’t need to do that, but obviously there’s always the opposite of that, there’s always that.

Thanks. The other side, because people are people.

[00:13:56] Maurice – ELAS Autistic Group: How you treat others is, I suppose, its own issue. Kind of routinely understood as its own issue. So no sentiment about offense to ourselves has to be carried to the extent of doing wrong to others, because then that’s , its own.

Different lines across so we can take all such sentiments within the

boundary of fair

[00:14:33] Jules – Autistic Radio: coexistence.

Justin saying that

no, you should never apologize for being your autistic self, exclamation mark, quite strongly, and he also says, being proud of who you are is very important, and I have to say, I good thing to be saying, Justin.

[00:15:01] Harry – Autistic Association SCIO: The next post is from That Autistic Lady. Great name. Yep, a digital creator, content creator of artistic ADHD and expraxia things. And it’s called it’s a post called Small.

. . I’ve always felt confused about the fact that throughout my life some people have assumed I’m laid back, passive, patient, and would avoid confrontation. Then suddenly, when they realise I’m not any of those things, they’d be shocked. I’d be frustrated and left wondering if they simply

not read me correctly or didn’t know me as well as I thought. It’s been a consistent problem that’s left me wondering, if it’s me, am I doing something wrong? Yes I am. I am naturally assertive and tenacious. I have opinion on everything. And I’m not sure what patient is. Although I don’t seek confrontation, I thrive in it.

And there’s only one person I know who I can keep up with an argument. They aren’t personality traits. I like to admit, or that I’m proud of in any sense. They can come across as too much or difficult and they easily irritate people. For most of my life I’ve felt On the outside looking in, I felt I was different.

So I molded myself into a more acceptable version of myself. Something far beyond masking. Although that does come into play to some extent. I’d shrank my very big and boisterous personality to please others. And it backfired every time. I’ve grown to understand being autistic, ADHD and dyspraxic is for me in my 30s, which I’ve been unlearning decades of damaging ways that have prevented me from being my authentic self.

It has taken a huge amount of self compassion and self acceptance to understand that I am not too much, difficult, or small. I am ambitious, driven, kind, loyal, funny, intelligent, strong willed, outspoken, and I stand up for what I believe in. I’m brave, loud, curious, and persistent beyond belief. I’m

[00:17:29] Jules – Autistic Radio: big. Wow. I want to give her a round of applause.

It’s so nice, so lovely put together.

[00:17:40] Harry – Autistic Association SCIO: It’s like a journey. I kind of like these posts, it’s like you’re going through a journey. Like somebody else’s personal journey. And the words just kind of, you know, they really, they do hit you, they’re quite powerful. Yeah, I love it that autistic lady. I

[00:17:54] Jules – Autistic Radio: love that you are big now, and I love that

you’re exploring this, I think it’s great.

[00:18:05] Maurice – ELAS Autistic Group: So she’s overcome the

self blame that have followed from judgments made.

And

the consistency of her own merits towards standing up for things. Being her first self has come through

reclaiming a fair face and self image.

It’s a recurring thing in other people’s behavior if we end up,

our characters judged for the fact of ever getting into issues. And I’m familiar with some of that experience. I found a pattern where I can be In my mind, I’m nice, but I think I’ve come across projected less assertive than her. Initially in a conversation, but then I may be, I may be reading the tenor of the post in such a way that I think that because I’m not seeing her converse, but anyway, in this pattern, if I come across fairly quietly and socially cautiously, and ,

[00:19:22] Jules – Autistic Radio: I’m.

[00:19:25] Maurice – ELAS Autistic Group: That’s just what I was trying for the quiet default of belonging and not thrusting in any challenge. Then Folks can take me as the easily put upon type of nice, and then when they do put upon me and they find that I’ve got a strong sense of fairness and react to it strongly and then they do see me arguing an issue, then that’s a shock to them and they think I’m no longer nice.

So that, they, they lower their character judgments on me because I,

[00:19:58] Harry – Autistic Association SCIO: I

[00:19:58] Jules – Autistic Radio: stood up, I

[00:20:02] Maurice – ELAS Autistic Group: stood up didn’t feel quite right

because I reacted duly strongly to the good ones who are taking advantage of.

[00:20:15] Jules – Autistic Radio: I think the typical experience is that

we are quiet in a conversation, we go along and we go along and then suddenly we outburst and I think there are reasons for that. I think. It takes effort to speak out sometimes, especially when you’ve been trying to keep your head down

and not be too prominent in the group and not have attention brought to your difference, et cetera. And then when you must say or must do something, people perceive it as out of the ordinary, too big for what it is, et cetera. It’s like the fizzy pop in a shaken up bottle, you know, we’re, we’re holding it, we’re holding it, we’re holding it, and then you open up and it goes everywhere and fizzes, you know?

I can

[00:21:16] Harry – Autistic Association SCIO: identify with that. Especially when I started in the sort of going into kind of committees and the meeting scene. I can do recall a few times where I’ve kind of been holding it in, in terms of I wanted something to say, but then it became like an outburst. And then. Then a lot of energy kind of flows out of you, and even sometimes there’s tears in my eyes, you know, just like, you know, and I’ve learned, you know, not to do that so much now.

There’s, there’s ways you can, you know, you know, learn how to. Manage that a bit. I do. It’s just like, it’s not like anybody’s gonna stop me from talking. It was like getting the confidence to say it and disagree about something. And I just about 20 years now, just, I can remember this one time where I was nearly totally drained.

Because it just felt like this. It was bursting out, and I wouldn’t say it wasn’t something over important, it was important enough to be said, but it was just because I wasn’t used to doing it, I suppose.

[00:22:27] Maurice – ELAS Autistic Group: And it comes as new to them, however it’s expressed, because it’s being expressed new on the outside there, what they’ve been used to up to then.

However it’s managed and fine tuned, it’s still open to that reaction in them.

[00:22:51] Harry – Autistic Association SCIO: That’s very true. The

next post is from Autistic and Living the Dream, personal blog, who describes sharing my experiences as an autistic, ADHD, OCD, queer person living in the UK. they/them And what they’re talking about is the reason I’m kind of laughing because I can I can identify with it in a way. Anyone else struggle will get their hair cut.

I’m sat here with massive hair because I just can’t. I can’t go to the hairdressers. Listen to the talk in there. Be misgendered over and over again. Not know the right terminology for how I want my hair. Being looked at for wanting a men’s cut. It’s too cold to get my hair cut off.

When, but when I get home I take off my hat, my hair is so annoying. It’s touching my collar, it’s getting hot and itchy, the fringe gets in my eyes all the time and gets greasy too quickly as I put my hands through it constantly. Washing it, drying it, brushing it, it’s just too much. Especially where I have another human being’s personal hygiene to look after.

I’ll wait another week.

The reason that I say I can identify with it in a way is although I don’t have a lot of hair so I cannot, you know, but I’ve always. You know, dreaded going to hairdressers.

[00:24:32] Jules – Autistic Radio: You don’t have a lot of hair. Is that, is that how, are you going to be allowed to get away with

[00:24:38] Harry – Autistic Association SCIO: that? No, I’ve got plenty of hair.

I just get shaved a lot. But get on to my, get on to my story. As, I used to go to the hairdressers, but I used to put it off as long as possible. The barbers, basically. Because I dreaded you get into a public place, the sort of that kind of small talk. They’re not being bad, it’s just, I don’t like talk, just cut my hair and then I go home.

Or I’ll pay for it, then I’ll go home, but sometimes you’re waiting in a queue, you’re sitting with strangers and all that. And then it’s the uncomfortable bit with her hair on the back of your neck and having to go in a shower afterwards, et cetera, et cetera. But since lockdown I’ve been getting my hair cut by my dad.

So I haven’t been in the barber’s for a while. So, but, and I can’t do it myself at the moment, I’ll need to learn. But it’s just to say I can identify with some of what that post is saying. The public thing, the judgment, the, just you going out and having to do something.

I hated it.

[00:25:50] Jules – Autistic Radio: I hated it. I absolutely hated it. I remember screaming as a kid. My mom used to cut my hair. It used to take her ages because of all the shenanigans and the feeling of the hair on my skin. So many different issues with sense , the brush going through my hair and tugging on it.

And then as an adult, when you had to have somebody else doing it for you, I mean, as a teenager, I lived in an army. An army jacket and when I left home and I didn’t have my hair cut, you know I then got into having it cut a period of my time and had it cut variously short in different places, but I never went to the same barber twice because I never felt comfortable going back to them, you know, just try a different one, you know, and it was generally a really uncomfortable experience.

I would go through all the social stuff of all the small talk and all that stuff. And then I’d come away feeling, well, you know, I don’t think I can go back there again. You know and I’m sitting here now as an old guy, losing my hair with one of those ponytail businesses that people laugh at and call, you know I dunno, there’s various words for it.

I’m in a foreign country and

I’ve had difficulty with my hair. It’s long, it’s hard to look after and what I really should do is go to a barber’s and have them wash it and brush it all out. But that hasn’t happened. What has happened is I’ve ended up with hair that ended up a bit dreadlocky and a bit matted up. I didn’t want it to get that way, particularly, it’s not a fashion statement.

I’ve kept it in a ring around to stop that happening. And then when I did go and buy a hairbrush to brush it out, I had to take out chunks of my hair. So this is very much a live issue for me.

[00:28:10] Harry – Autistic Association SCIO: Such is life. I’ll never moan as a bald man again. The thing I get actually, because my hair grows, I do sort of look stupid because it’s wee islands of hair and things like that. But, after the stories, I mean, reading from, obviously, the, the post itself, and hearing yourself who have got longer hair, it’s like, shut up.

I don’t even cut my own hair, I mean, it’s not like not going to the, the barbers is a problem, just, my dad does it, because he’s bald as well, I inherited the baldness. It’s the same kind of hairstyle, just different colour. But it just shows you the kind of, it’s things you don’t usually talk about, like going to hairdressers or barbers or, and then these things come up, you go, ah, I can identify what the, that person is saying, you know, it’s just, especially when you’re going out and you’re dealing with the public and getting out of your comfort zone.

Next post is from, is AUDHD Surplus, who used to, formerly known as Autistic Surplus, and it’s about labels. And the picture it says, why, people ask, why would you want to label yourself? And the answer being, so I can replace the labels of frubbled, problematic, lazy, and bad.

[00:29:35] Harry – Autistic Association SCIO: All those kind of words that it’s thrown at people. And I read the text below as well, it kind of sort of explains it. Notice people only care when you start to label yourself for positive reasons. But when other people label someone who’s struggling as their other things, they just think and you should just accept it.

We’ve all been labeled incorrectly and unfairly by a society who has understood us even less than we usually understood ourselves. Rip those labels off and replace them with the truth. With your identity, not what you are forced to wear as an anchor around your heart and soul. We kind of covered that many times before about the labels.

The question of why would you want another label? And obviously the discussion of people labeling you. And that’s kind of affecting you in a certain way, but the way to counter that is to label yourself in a positive way which suits you. What’s your

[00:30:38] Jules – Autistic Radio: thoughts on that?

[00:30:40] Maurice – ELAS Autistic Group: Incorporate their judgments of your struggles that they can incorporate the way they judge yours. Struggles into the picture of you

and then they become critical labels. Well, yeah, I guess it’s identity labels instead of critical labels.

[00:31:07] Harry – Autistic Association SCIO: Now, a lot of people get labeled by others and it’s usually a label that’s Not very nice, to put it gently, but that post puts it across that you don’t need to put up with that, you know, you can choose your own label , to identify yourself, because only you knows you, and You know, it’s just a sort of, kind of, freedom thing, to break off the shankles of things that you’ve been described as, and labelled as, depending whether it’s medical terms, or just how people are assuming how you look, and how you behave, and other people’s opinions of you, or judgements of you, so, I totally get it, and totally agree with it.

[00:31:56] Jules – Autistic Radio: A lot of this is beyond my experience, you know, I’ve lived a very charmed life as an autistic person. In many ways I don’t think I have been particularly labeled and the labeling has never got anything to do with autism because I’m so late in my diagnosis. And as far as identity goes, you know, the, I’m only exploring my autistic identity at this stage in my life.

It’s fun. It’s interesting. It’s a curiosity. I’m learning stuff from people, I’m learning about them

I don’t know, I just probably don’t have the same experience

[00:32:43] Maurice – ELAS Autistic Group: as other people. They’re the type of labels that go better than teenage posts than that you get from phoning at school,

[00:32:54] Jules – Autistic Radio: Well, the label I got then was disruptive anti establishment uncooperative, anti social, anti society.

[00:33:04] Maurice – ELAS Autistic Group: But a lot of those are similar types of label, yeah? Yeah, but

[00:33:08] Jules – Autistic Radio: I leaned into them. I was all of those things and they

[00:33:12] Maurice – ELAS Autistic Group: fitted me perfectly. Anti social, well, I mean, you can attach that to being autistic and socially engaging was being taken as anti social. I didn’t see it as a negative.

[00:33:27] Jules – Autistic Radio: You know, I saw it as an affirmation of my My young burgeoning identity as an independent and different from everybody else, you know, I’ve always celebrated in being completely outside the mainstream.

I haven’t wanted to fit in as much as a lot of other people seem to want to fit in.

[00:33:54] Maurice – ELAS Autistic Group: I also do fit in a lot more than a lot

[00:33:56] Jules – Autistic Radio: of autistic people have experienced, so you know what, it’s easier

[00:34:00] Maurice – ELAS Autistic Group: for me. You had an advantage in being quite skilled in that going off on your own lifestyle. I did.

[00:34:11] Jules – Autistic Radio: I could turn it around on people. I

[00:34:13] Maurice – ELAS Autistic Group: could, you know,

[00:34:15] Jules – Autistic Radio: I could take the bullies and twist them round, you know.

I was very lucky, very fortunate. So that right from the beginning, I’m saying my experience has not been as difficult as most autistic people seem to express. And I think that partly when I get diagnosed, that’s why I feel positive about the whole thing from the get go. I mean, when I first started talking to you in our regular sessions.

You have to admit, I come, I came across as pretty positive about myself, you

[00:34:55] Maurice – ELAS Autistic Group: know?

Yeah, it goes a lifetime of basis for us.

[00:35:03] Jules – Autistic Radio: Other people don’t have the advantages. I was angry and upset and feisty and all those things that they labeled me with, you know, and I was in a difficult place, you know, being adolescent, being autistic. Is two things to deal with at the same time, but I don’t know, it just doesn’t seem to be,

I don’t know, I seem to have had some kind of advantage of being in a better place and being able to resolve it and being able to rebel and go off and just be okay about it, you know, leaving home at 16 and getting out there in the world and exploring it. Other people don’t have that, they certainly don’t nowadays in the modern world.

They can’t get away from social media, and they can’t escape their own hometown. I was able to sounds like I’m bragging, I’m not, I’m just trying to say it’s

easy for me. Yeah, stating history, yeah. You know?

You’re just,

Discussing another experience. that others may be, you know, similar to yourself. To

be fair the majority of the autistic scene is comprised of people who haven’t had it easy, but the autistic people I know generally are people who’ve had issues with autism.

They’re not in a bad place. They’re not on social media talking about their autism. Getting on with their lives, running businesses, doing things, you know, it’s not a big part of their life, even if they are autistic. I’m unusual amongst them that I have decided to make looking into autism one of my things.

There’s a bigger population out there that just go, Oh yeah, yeah, neurodivergent. Yeah. I’m odd. Yeah. No autism. Yeah. Yeah. So what? You know, the people we hear from within autism are the people who have had the toughest time.

There’s, there’s issues and stories stick out to the west. It’s like news sticks out because it’s Yeah,

that’s true.

, positive issues don’t stick. You’re right.

Justin says toot to your own horn. And he says, feeling pretty positive about yourself, you know, and he’s giving me a positive piece. You know, he’s given me a thumbs up and he’s given me an emoji. He’s not saying I’m bragging. And he’s. When he says tooting his own horn, that’s part of the conversation I’ve been having with him on Podbean about he uses lots of emojis and I’m an amateur at it, you know?

I’d like to thank everybody for taking part. Being involved and we’ve touched on quite a kind of lengthy different kind of various posts.

Thank you for listening. This is Spectrum Voices Conversation here 6pm to 7. 30pm UK time every Sunday, which is 1pm to 2. 30pm Easter Standard Times in the United States.

Good night.