Transcript: 'I'm wearing a tight T-shirt so I know where I end' - October 12 2017

This is a full transcript of the Autism Takeover Show: 'I'm wearing a tight T-shirt so I know where I end' as presented by Robyn, Steward, Jamie and Lion as first broadcast on 12 October 2017

ROBYN - Welcome to Ouch, a weekly disability podcast from the BBC. This episode is an autistic takeover. Oh, I can't say that because the next line written by the team is 'person first language' and that would offend many people listening, so…

JAMIE - Including me.

ROBYN - So I'm going to say that this episode is brought to you by two autistic people, and the team have said we can do what we want.

JAMIE - Bwahaha!

ROBYN - So, there's a tea caddy full of questions that's going to guide the podcast. I've never seen a tea caddy guide a podcast before, but okay. So I'm Robyn. I'm 31 years old. I'm an autistic woman, and I am a trainer, teaching professionals about autism, and also a musician. And sat across from me is Jamie and Lion.

JAMIE - Hello. I'm Jamie Knight, though most people know me as Jamie and Lion. There's a four foot lion who lives in my backpack but I'm sure we'll mention him later. I'm autistic, I'm a developer, and I work in the field of digital accessibility. So my day job is helping to ensure that the BBC website, apps and services, serve our entire audience. I also do some presenting, teaching and kind of public speaking about autism.

ROBYN - On to the tea caddy.

JAMIE - Oh, this is exciting. What have we got?

ROBYN - Here it is. It's green and it says 'tea two' on it.

JAMIE - Oh, it's useful to name your pots. Actually I do that at home, all of my cupboards are named by what's in them, and then I have a cupboard called 'other stuff' because I couldn't think of a better name for the other stuff.

ROBYN - Okay, so the first one is, 'Why do you avoid eye contact?' Well, firstly not all autistic people avoid eye contact. Jamie, is eye contact something that you have a problem with?

JAMIE - I just don't do it. I don't avoid it, it's not like I… Actually, weirdly we're sat across a table from each other right now, I have one eye closed and I'm staring at you because I feel that's what I should do to show you that I'm listening.

ROBYN - It's okay not to look at me.

JAMIE - Right, because that's what's been ingrained into me. So I do eye contact as a learnt thing, but it doesn't actually offer me anything, in fact it gets in the way. What I'll quite often do is take my glasses off and just look around people's faces so they know that I'm paying attention, but actually eye contact itself, it's not something that I avoid, it's something I just don't have any impulse to do. I don't really find it very useful for myself, and luckily, because I mostly work online typing into forms and using online chat and things like that it doesn't really affect my life. So all those hours spent teaching me eye contact could probably have been better spent teaching me how to deal with loud noises or how to better advocate for my needs within the environment.

ROBYN - Well a lot of autistic people are like you Jamie, and other people say that it's painful. I'm someone that, like you, I learnt to make eye contact, but I can find it useful. When I was a mentor working with autistic individuals I found that I started to be able to sort of… some of it maybe was picking up on people's energy but also, I don't think I get the full experience of eye contact, but I think I get something from it, even if I'm not sure entirely what it is. But it's totally fine not to look at me.

JAMIE - Do you ever get this interesting noise versus signal ratio? So you can look at someone's face and you can go there's definitely some information there, I can sense that there is information there, but right now I don't know what it means.

ROBYN - Um… kind of. Let's move on to the next question.

JAMIE - Okay. I think it's my turn to pick one isn't it?

ROBYN - It's your turn.

JAMIE - Into the green tin. What do we have here? 'On avoiding social gatherings are you fine with avoiding them or do you wish you could go?'

ROBYN - I like social gatherings, depending upon the people and the type of social gathering. I've noticed that in the music world when you go to a conference there's normally like a sort of semi-structured activity in the evening, like going to a gig or going to a gallery or something like that, and I find that much easier to cope with rather than big dinners. However, it really depends on the people and how much they know about autism. So I've never been that keen on family gatherings. Having dinner with my parents, that's fine, but any more people than that and that's, you know, verging on too many people. If they know about autism and are autism friendly then that's probably okay, but I find that a lot of people struggle to remember, like they'll remember me but they don't seem to remember all of me, so like they'll make comments about, "when am I going to learn to drive," and that kind of thing, and I find that quite painful because I can't do that because of my visual impairment, and if they're my family they should remember that.

JAMIE - Okay, so I kind of have two parts to this. So there's a side here on avoiding social gatherings, again I don't avoid social gatherings, I'm often excluded from them, so I think it's the other way round. For example, in the web design industry they tend to do a lot of evening events in loud pubs and it's simply too loud for me, too busy, I'd have trouble keeping track of what's going on. You know, if you're in a large loud place, and for me at least when it's very loud it affects my ability to think almost, even if I've got ear defenders on. And then I get into the situation where I'm not entirely sure who I'm talking to and the noise and the people and the confusion just makes me very muddled and then I feel out of place and then I start getting anxious. Or as we call it getting elephants, it feels like there's an elephant stood on my chest.

So to start off with, I don't really avoid social gatherings, I find that many social gatherings are bad environments. However, when we get the environment right, when we get the set-up of things right, which can be as simple as clearly saying when something finishes, which can often, I don't know about you, for me, if I go into an event knowing when it finishes is often as important as knowing when it starts, because I can kind of pace myself. So when the environment is right, when the people around me, like with you, are autism-aware, they're aware of what I need from the environment and are accepting and nobody's going to tell me, "Oh, take off those ear defenders, you look stupid," or "You don't need those."

I tend to get this quite a lot, I often struggle with my speech, if I'm struggling with my speech people will assume that I'm 'very autistic' in their words, however if my speech is working fine they'll tend to assume that I'm not that autistic at all, when in actual fact autism just doesn't work that way. So what will sometimes happen is I'll be at an event and I'll not be verbal and I'll be using my phone to communicate and almost get a pat on the head, "Oh, didn't you do well coming in today," and I'll be like, "No actually, I'm the main speaker in half an hour, talking about asynchronous loops in node," a very complicated technical subject, and other times I'll be verbal, but because I'm verbal people will discount the difficulties and they'll say, "Well, you look all right, why do you need a quiet space to go to? Why should we turn the lights down?"

ROBYN - [shakes tin]

JAMIE - Oh, maracas, der, der, der, der.

ROBYN - Okay, here we go. So I think this question is about something called stimming, which if listeners are new to stimming it's spelt, S-T-I-M-M-I-N-G. Sometimes in formal situations it's described as repetitive routine behaviours, and this question says, 'Do you own a fidget spinner?' Well actually yes I do, because I was given one. I'm doing a study on stimming, so a few years ago I did am online survey and I asked a hundred autistic people about types of stims they had and why they did it, because I know there are many professionals, more so then than now, but there are still professionals who don't understand that stimming can be a coping mechanism.

And everyone is different but I wanted to explore that, so out of this hundred person sample I got a list of 102 different types of stims and also lots of reasons why people stimmed. And fidget spinners are kind of like a mainstream stim toy or stim device, and lots of autistic people find them very useful. I'm not sure that it's the thing that I find particularly useful, but everybody is different. It's very nice and I carried it around in my pocket, but for me I don't find them essential.

JAMIE - My answer to that one is… The question was do I have a stim or do I have a fidget spinner?

ROBYN - Do you have a fidget spinner?

JAMIE - I don't have a fidget spinner or a fidget toy because I've spent all of this recording sitting in my chair bouncing up and down, rocking backwards and forwards which actually, if we were to provide some stereotypes, sound like I've got a mental health problem, I don't, it's just that movement helps me know where my body is and stops me from feeling like I've turned into like an amorphous floaty cloud, which sometimes is a really nice feeling, but not when you're sat in a chair trying to focus on something. So for me it's all about big motor movements, I'll be bouncing around, stimming, flicking fingers, it won't be small fiddly things.

When I was a kid I was taught to take a lump of Blu Tack in my pocket and try and make it into a square with my fingers to kind of distract my mind, I didn't really find that very useful because my entire brain was worrying about how square that block of Blu Tack was getting and I found that I couldn't do conversations. So in my life we kind of just let the stims run and yeah, I don't really have a fidget spinner, I stim with my entire body. Ta-dah! I'm kind of doing jazz hands at you. Woo! Yeah.

ROBYN - Do you want to pick another question?

JAMIE - Sure. Oh, this is a long one. 'Autism experts are always on about sensory overload. Is the struggle real? And if so, how do you handle it?'

ROBYN - Yes.

JAMIE - Yes.

ROBYN - So sensory overload is when your brain gets too much sensory information, and that can be from any sense and it's important when talking about senses that you also include vestibula, which is your sense of balance, and as I've previously mentioned, proprioception, which is a sense of where your body is in time and space, but not space like Apollo 13 or time like time on your watch, or a vibrating watch in your case.

JAMIE - Yeah, I had a vibrating watch earlier and that was giving me some very interesting sensory feedback. I wasn't sure if I was stood up or sat down for example.

ROBYN - Well, that's a great example of proprioception, thank you.

JAMIE - I also with the squeezy… So for me my protioprocep…

ROBYN - Proprioception.

JAMIE - That's the word. That's a word I can write down but can't say, however I have other words that I can say, like onomatopoeia, which ironically, I can't write down. But anyway. So yeah, with that sense I feel like a fluffy cloud and I quite often wear squeezy type clothes, so today I'm actually wearing a T-shirt that's probably a little bit on the small side for me that's quite elasticated and it's telling me where I end, which helps me from, you know, I stop bumping into things.

So on the sensory overload thing, again I would face it the other way round, my brain doesn't get overloaded by too much information, badly designed environments overload everybody and I'm just more sensitive to it than other people. When we design environments better, which can be as simple as, for example in the studio we're in now if we could lower the lights a bit that would be fab, or if it's like a Costa café, they've started designing them with a little bit more sound absorbing material so…

ROBYN - I'm just thinking, just can we pause for just a second…?

JAMIE - Sure.

ROBYN - There's dimmer switches on the wall I think? Could we turn the lights down or off?

JAMIE - That would be really cool if somebody could do that. And this is another thing as well, which is quite often I'll be uncomfortable but I won't know why I'm uncomfortable because I'm just uncomfortable, and until we change the sensory input that's making me uncomfortable I won't necessarily be able to go, oh that's what it was.

ROBYN - Is that better?

JAMIE - That's much better. We've just turned the lights down in the room.

ROBYN - Would it be okay, you don't have to share this example if you don't want to, but you told me an experience you had with some BBC doors I think in Salford?

JAMIE - Oh yes.

ROBYN - Could you tell us that story please?

JAMIE - Yes sure. So I travelled all the way up to Salford on my own which is a massive achievement for me, dealt with the trains, dealt with everything, and I got up to the doors to the building and I did something wrong, held my pass the wrong way and an alarm went off. Beep, beep, beep. It bounced around my skull, I was completely blown away, actually lost my speech for several hours, it hit me that hard, and again, I've got a line manager who helps me to focus on, well, what's the environment around me, how do we make it more inclusive, how do we make it work, rather than go, Jamie, you've got a problem, get it fixed. So when I first said, "Oh I'm sorry, I'm sorry, I'm sorry, I must be too sensitive, I'm sorry, I'm sorry, I'm sorry," Gareth went, "Hang on a minute, no that actually was really, really loud. I wonder if it affects anybody else?" So he spoke to R&D, and R&D set up a test duh, duh, duh and the doors were basically going off at something like the same volume as Concorde taking off, because the doors were designed to sit in giant hallways and they're inside this small space. So the end result was that they just turned the volume of the doors down and then the feedback on the building has been much more positive since.

Gareth sometimes refers to me as almost like a canary in the coalmine. So back in the coalmining days they'd take a canary or a small bird down because it would be affected by noxious gasses earlier, so if your canary started getting sick that meant you're going to get sick soon too. So when we work around environments the adaptions you make for autistic people often also help non autistic people, or simply people who have some other reason to be sensitive that day. A friend of mine burst their eardrum and found that they'd got hypersensitive to certain frequencies so I'd lent them some ear defenders and they were a much happier person. So, you know, it varies.

Well Robyn, I think that's the end of our time. It's been really great talking to you.

ROBYN - Yeah, you too. Yeah, it's a shame, I don't really want to leave but they're kicking us out of the studio shortly.

JAMIE - Yeah, but the IT man has promised to talk me through the equipment so I'm very happy.

ROBYN - He's called Neil Churchill, and he's not the IT man, he's the studio manager.

JAMIE - Fantastic. He's amazing.

ROBYN - He's dressed well.

JAMIE - He's very dressed well. I think we're completely distracted. Anyway, so that's it from us. Takeovers are an occasional series on the Ouch podcast feed. Tell us what you thought of this one or say what you'd like to hear in the future by emailing ouch@bbc.co.uk. You can also find Ouch on Facebook, and on Twitter @bbcouch.

ROBYN - You can also find us on Twitter. I'm @robyn_steward. And Robyn is spelt R-O-B-Y-N. Steward is S-T-E-W-A-R-D.

JAMIE - And I'm @jamieknight. J-A-M-I-E-K-N-I-G-H-T.

ROBYN - If you're streaming this over the web and like what you hear please subscribe to the Ouch podcast by adding to whatever app you get your podcasts from, and tell your friends. Goodbye from both of us.

[Jingle: This is the BBC]

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