‘A Mexican wave of flapping’

This is a full transcript of 1800 Seconds on Autism: ‘A Mexican wave of flapping’ as released on 21 May 2020 and presented by

Steward and Jamie Knight.

[Jingle: 1800 Seconds on Autism with Robyn Steward and Jamie Knight.]

ROBYN - When I was at school I was locked in toilets and people would spit in condoms and throw them at me and wrote horrible things in the bus shelter about me, and I didn’t have the insight to know if it was something that I was doing that was causing the bullying.

FRITZ - I’d bend one hand down to strike the heel of the other and then alternate. It sounds like… [slapping sound] that.

ROBYN - Neurotypical people, they often talk about stuff that autistic people think is boring, you know, like the weather…

JAMIE - Football, people…

ROBYN - Football, people, clothes.

JAMIE - Chit chat. Social gossip.

ROBYN - Yeah. ‘Love Island’.

[Music]

ROBYN - Hello, and welcome to 1800 Seconds on Autism, a podcast about the ups and downs of autistic life. I’m Robyn Steward. Jamie Knight, my co-host, can’t record at the moment because of low energy levels and low bandwidth. He’s safe though, and even though this is officially the final episode in series two, we’re keeping in close contact about making a Coronavirus extra episode together in June. Most of today’s podcast was recorded with Jamie ages ago, so you’ll hear his voice throughout the show. Let’s start with a chat about social conventions which we had before many work and leisure events were moved online. Here’s Jamie with an email from a listener called Jono.

JAMIE - Okay, so Jono wrote to us. He is autistic and he’s met both Robyn and me. Jono talks in the email about how it feels in awkward social situations. We’d been at an event and there was an evening thing. He says, “After eating I have a very clear memory of everybody moving into a lounge type area and all of the neurotypical people gathered in one group to talk about, I don’t know, probably the weather or how their journey to the event had been, while the three of us autistic people sat in a different area and talked about our experiences while enjoying the Lego and colouring books that Jamie had brought and kindly shared. It was wonderful to realise that I could just do something like that which made me comfortable, rather than having to sit and listen and behave “appropriately”, in scare quotes, all the time. I now regularly draw patterns on graph paper to feel comfortable in similar situations, which not only helps me to stay calm, but it can look quite nice too.” I can remember that. I’d had Lego and colouring books with me, and we just all kind of sat in the corner and had some auty fun whilst all the neurotypical people got on with boring stuff. It was really good, and I’m really glad that he took away that feeling of like, being around people where you’re more comfortable. If I’m honest I like socialising, and I do this with my friends a lot where I might be doing Lego or colouring, but rather than a constant back and forth conversation, they’ll ask a question or will make a point, we’ll stop, I’ll build a few things, follow a few instructions, colour in a bit of a book, and whilst I’m doing those activities I’m thinking. Then I give a response.

Another one that I’ve used before is buying a packet of biscuits, so whenever I used to have scary meetings I’d buy a packet of biscuits and I’d sit in the meeting with a packet of biscuits and every time I was asked a question and needed to give myself time to think I’d eat a biscuit. So I’d get the time of me eating the biscuit to think about what my response would be. And it seems to be completely socially appropriate to eat a biscuit every time someone asks you a question, but if I just stopped and did nothing for those ten seconds people get really weird. And I think neurotypical people hate silences, they find them really awkward, but I don’t, I find them really useful. So the Lego and the colouring, it gives me something to do with the prolonged silences that I want.

ROBYN - Generally when we have a big meeting I don’t sit on a chair, I sit on the floor, and I have to be doing something else like drawing a picture. But people in my team have learnt, oh, it doesn’t mean Robyn’s not listening, and I respond and I’m listening intently to what’s going on, but it’s so much easier for me to listen and think if I’m doing something with my hands.

JAMIE - Yes.

ROBYN - So like the t-shirt I’m wearing, I’m wearing a purple t-shirt that says Robyn’s Rocket on it and has got a picture of a rocket, and I drew like 11 different designs for t-shirts sat on the floor during a meeting. And I contributed to the meeting fine, meanwhile drawing these designs, and then when I got home I scanned it in and it became a t-shirt.

JAMIE - And if somebody thinks it’s rude then I say, “Well, what are we here for? Do you want my contributions in the best possible way? You’re paying me for my time, do you want to make the most out of that, or do you want us to follow some social conventions that aren’t useful?” So a great example of it being when I was doing consultancy work I would often sit on the floor, on the basis that I couldn’t fall off the floor and chairs are often a really bad texture. So if I can sit on the floor and talk to them from there they would get better answers out of me. And then yes, if people think it’s rude I say that’s their problem. I’m pretty assertive on it these days. I do care what people think, but to some degree I’m also happy to say, “Look, I don’t agree with you and this is my life.”

ROBYN - Yeah, I mean… This is the first time I’ve ever worked in somewhere I’ve felt like, oh I don’t actually have to do these things just because they’re what society expects, I can just tell people, “Look, I really want to contribute but I can’t just sit here and keep my hands still and I can’t do that and concentrate. You get bad concentration, because so much of my concentration is going on sitting still, I can’t do it.” Even when we’re sat here I don’t sit still do I?

JAMIE - Yeah. Well, I’m sitting here playing with the headphone cable and fiddling with coins and stuff.

ROBYN - And I’ve got Henry.

JAMIE - It’s such am amazing liberating feeling when you go into accepting environments where the goal is effective communication, not social conventions. And it’s probably one of the best things I ever came across in my own mind, which was to say that I don’t care about the opinion of people who want to follow social conventions but can’t explain why. If you’re following a social convention only because it’s a convention and you can’t tell me a concrete reason why it’s important to you then actually if it’s harming me, if it’s making a problem for me then I will be assertive and say, “Actually no, that’s not a useful social convention.” Becoming assertive and defending my own boundaries took a long time because I was always taught that I was wrong. Being accepted and told, actually no, you can use this space in the way that works best for you is hugely liberating, and it’s also massively productive.

[Jingle: 1800 Seconds on Autism with Robyn Steward and Jamie Knight.]

ROBYN - Eli Brown sent us an email. Eli is 16 years old and uses they, them pronouns. They say they found the podcast helpful, having been diagnosed relatively recently. Eli has a couple of questions for us.

JAMIE - Eli asks if we know why it’s wrong to talk about your special interest all the time. I don’t know, Robyn, do you think it’s wrong to talk about your special interest all the time?

ROBYN - Eli, I think the thing is many autistic people think quite differently to neurotypical people and are often really focused on something in a way that maybe neurotypical people don’t get so focused on. So, because we’re coexisting with different neurotypes, non autistic people and autistic people, sometimes there’s a bit of a clash in terms of what is interesting. So like neurotypical people, they often talk about stuff that autistic people think is boring, you know, like the weather, football…

JAMIE - Football, people…

ROBYN - Football, people, clothes.

JAMIE - Chit chat. Social gossip.

ROBYN - Yeah. ‘Love Island’. I mean, I’m sure there’s lots of autistic people that like those things individually, but autistic people tend to be focused on a narrower amount of topics. Obviously we can’t talk about every single autistic person because everyone is different, but basically neurotypical people generally don’t just want to talk about the one topic for a long period of time that they’re not really interested in, just like we don’t really want to talk about loads of little topics that we’re not interested in, like the weather, football, etc, etc.

JAMIE - So, sadly there isn’t any therapy available for neurotypical people to make them more autistic so they can cope with this world, so we’re just going to put up and give them some tolerance.

ROBYN - But equally, there’s no therapy to make autistic people neurotypical people, and that’s a good thing, we need all the neurotypes to be together.

JAMIE - I’m saying this slightly tongue in cheek, because whenever somebody says to me, “Oh, you know, my kid goes on about their special interest,” they phrase it like a problem with their kid, versus I’m like, “Well no, you go on about stuff I don’t care about,” so it’s really a difference of perspective.

ROBYN - Well, what I’d suggest, Eli, is you find people that are interested in the same things you are, talk to them about those things. Being neurotypical has its pros and its cons, just as being autistic does, and we all have to find a way of living together and being tolerant of one another. So go and find the people who are your tribe if you like, the people that are interested in things that you’re interested in.

JAMIE - There are lots of places you can find them, so for example, when I was younger I spent a lot of time on web design forums and I suppose the equivalent now would be Facebook groups, and that’s how I actually met most of my current friendship group, was by meeting people who are into the same things I am as much as I am. So it can be a good way to build connections. Another option is if you’re really knowledgeable about something find a magazine related to it and write to the editor. Most magazines are really keen to hear from new writers, so if you can do it it can really focus a really strong interest into the right audience.

ROBYN - But also, bear in mind, Eli’s 16, so probably find a safe adult, an adult that you trust to choose your Facebook groups, and also don’t meet random people off the internet, even if you think you know who they are, unless you’ve actually met them in real life. Always take someone you trust with you who’s an adult. And make sure that you tell an adult where you’re actually going. The thing I want to say about this is that sometimes it feels really awkward to say those things, and I remember being 16 and really wanting to do things that I thought my parents aren’t really going to like this, and that is a very common thing for teenagers, but I think it’s really important to find a way of communicating with them in a way that no one is going to get shouted at or told off.

JAMIE - So we’ve just discovered two things there. One is that Robyn has quite a rebel streak, and I think there’s some history there to discuss another day, and the second one is that Robyn gives really good internet safety advice, so I’d recommend listening to her.

ROBYN - Eli’s other question is how do you deal with people or situations where you want to stim or for instance wear ear defenders, but feel like people will judge you or make comments on it? Well, Eli, I think this is a very common worry of many autistic people, and what I’d say is if you’re not hurting somebody else and you’re not hurting yourself then just get on with it. Don’t worry about what other people think. However, I guess that Eli’s probably asking the question because they worry about what other people are thinking about them, like ideally autistic people should never have to suppress their stims, but when I was at school I was locked in toilets, and when I was Eli’s age people  would spit in condoms and throw them at me and wrote horrible things on the bus shelter about me. And I can see that if I felt that something that I was doing, I didn’t have the insight to know if it was something that I was doing that was causing the bullying, but what I’ve done that has worked well in a lot of schools is I’ve gone and spoken to the kids about autism. And I’ve talked to them about stimming, like all of the children within a school, or young people within a college, and I haven’t singled people out and gone, oh well, I’m here because this person is autistic and they’re getting bullied or anything, but I’ve educated them. And in general most kids that I have taught, like the feedback from the schools is that it’s really helped their autistic people to settle in. So I would think about maybe talking to, if you’re in school or college, talking to the head of inclusion and asking whether that might be a possibility.

I mean, when I was 16 I didn’t care about street cred, but I know that there are lots of 16 year olds for whom it’s really important to just blend in and not look weird to other people, I mean not that wearing ear defenders is weird, but like you might think that other people are going to think you’re weird. So…

JAMIE - Standing out from the crowd can be quite dangerous.

ROBYN - Yeah. So one thing you could try is, you can get from Boots or other pharmacies silicone clear, like transparent mouldable earplugs, they come in a circle, they look like a Werther’s Original sweet, but they’re sort of transparent.

JAMIE - Pro tip. Don’t put Werther’s Originals in your ears, that won’t help.

ROBYN - Don’t put Werther’s Originals, no.

JAMIE - Please buy these ear buds instead.

ROBYN - No. Silicon earplugs that you can mould and put into your ear and because they’re transparent it just looks like a bit of your ear. Also, loads of people wear noise cancelling headphones, like that’s a normal thing.

JAMIE - Ear defenders are one of those things I’m pretty interested in. I’ve got about a dozen pairs, which is like 12 pairs, and they all live on the end of my bed, so they’re always ready to leave the house with me.

ROBYN - I tend to use earplugs or noise cancelling headphones, but I bought some ear defenders for Robyn’s Rocket and I have quite a wide selection now. Jamie, what ear defenders do you have, and how do ear defenders work please?

JAMIE - Okay, so you’ve got two different types of ear defenders. I know it’s a podcast so I’m just going to show it to the audience, I’m just waving some ear defenders at you.

ROBYN - Even though our producer and exec producer are blind?

JAMIE - Yeah, they’re both blind as well, so you know.

EMMA - Can I touch, maybe?

JAMIE - Yeah. Here, have some to touch. So the ear defenders I’ve just passed to you are some folding ones that are designed to be quite discrete and quite portable. So if you push on the bottom which is the hard bit, push that up…

EMMA - Oh!

JAMIE - They fold up, which means you can fit them pretty much in a bag or a pocket quite easily, but they don’t offer that much protection. So these are really good when there’s a loud background noise, or when I need something in a hurry, because these are the ones I carry with me pretty much all of the time. So walking across a busy shopping centre they’re really good for, because you can still hear enough to be aware of your environment but they block out enough of the loud bangs, crashing shopping trolleys, that sort of thing.

ROBYN - I’ve got some that pop open as well.

JAMIE - You see, yours are much beefier though. Those are really thick, so those are more like what a builder would have. They’re for taking out almost all of the noise. You wouldn’t be able to hear somebody talking to you if you were wearing those.

ROBYN - Well, you say that, Jamie, but I’m pretty sure I can hear you.

JAMIE - Is that because I’m just loud?

ROBYN - No, because I’m sensitive to sound anyway so it takes the edge of it but I can hear. How do ear defenders work, Jamie?

JAMIE - So one type are basically just bits of plastic and foam that go over your ears to stop the sound getting in, they’re passive ear defenders, and then you have active noise cancelling ear defenders or headphones, they listen to the noise around you and they generate the opposing noise. So they cancel out the noise that is around you by basically playing the opposite noise over the top of it which takes away all of the energy. So that means that active noise cancelling headphones like Beats and all the fancy brands, Bose etc, they are using a computer to eliminate the noise versus normal ear defenders which are just blocks of foam and plastic in many different shapes and sizes.

ROBYN - Lots of autistic people wear ear defenders to be able to cope in environments where there’s a lot of noise.

JAMIE - They help to make environments that aren’t necessarily designed for us in mind to be more bearable. Sometimes they’re also quite reassuring to have around, because they mean that if something does suddenly go off like a fire alarm I know that I can reduce that noise and still safely exit the building.

ROBYN - So I’ve got these black and red ones that are the same as yours. How many decibels do these cut?

JAMIE - I didn’t do my research before I came today. I think these are 65 decibels, but it’s the frequency range that they cut that is the main thing. so if you’re playing 90 decibels at them, which is a loud noise, I think an aircraft taking off is 100 decibels, so if you play 90 decibels at them you would get 30 through to your ears. Thirty is about the noise of a quiet room. That won’t cover every single frequency though, so they’ll mostly focus on medium frequencies and low frequencies, rather than the really high frequencies.

ROBYN - So low frequencies, that would be like a bus?

JAMIE - A bus going by, the grumble. Weirdly, that background chat noise in a supermarket or something like that, that’s quite low frequency. High frequency would be things like squeaky wheels. These big chunky ones don’t tend to be that good for like squeaky wheels or squeaky speakers, that sort of thing.

These are ear defenders, so they’re just stopping the noise from getting to your ears. For the actual noise cancelling they can be really impressive for the right scenario. So on an aircraft where the noise is very repeatable the active ones can basically completely eliminate the noise so you wouldn’t know you were on an aircraft. They are absolutely amazing. For things that are intermittent noises there’s always a little bit of a delay as the computer catches up, so for example, I sometimes wear my ear defenders in the café, and in the café it can’t keep up with the noise of cutlery, with the noise of people talking, with the occasional kid shouting, but it will get rid of some of the background hum. There’s also the difference between an open and a closed strap which is to do with how they go over your head, but that’s probably a little bit too detailed and nerdy.

EMMA - How do you go about getting them and choosing them?

ROBYN - Screwfix, Homebase, Toolstation.

JAMIE - Amazon.

ROBYN - Yeah, Amazon. There are some companies like Sensory Direct.

JAMIE - You’re also looking for a certain legislation, so if you look out for EN352, that is the European standard for a set of the top level of ear defender. So they’re the same ones as like what builders have. So sometimes if you’re looking on Amazon or some other online shopping place, if you put that in then it will show you everything that complies with that standard.

EMMA - Does what they look like matter?

JAMIE - To me, not so much, but I do own a set that look really discrete, because sometimes I don’t want to stick out, although 99% of the time it doesn’t really bother me. The other side of it is it can sometimes be a way to indicate to people that there is something going on. A little bit like a blind person having a cane, it can indicate to people  around me why I might be looking a bit spaced out or a little bit confused.

EMMA - What would happen if you didn’t have them?

JAMIE - I’d run out of spoons really, really quickly. Earlier this week I was in the café in town and I didn’t have my ear defenders or my headphones with me. I normally have three hours in there before I run out of energy. I ran out of energy in 45 minutes because it was just too loud and it was just sapping all of my energy and focus. I didn’t get much done.

ROBYN - I think I wouldn’t be able to enjoy live music as much. I wear earplugs instead of ear defenders most of the time because I’m really into music and the earplugs that I have are designed for musicians. So, as a musician, and someone that goes to lots of gigs I rely on my earplugs to, A, protect my hearing, but also just to take the volume down a bit. Like with earplugs I find I don’t then have ringing ears the next day or anything so that’s a good thing. I never worry about how loud a gig is going to be because I know that I’ll have my ear plugs. But I think also just on a sort of day to day level, like some places are quite loud and that can make me anxious, just because there’s a sort of fight or flight response, and reducing the sound or having comforting sounds to listen to can help me feel calmer.

JAMIE - I also tend to find that I play music via my headphones, so often the same track on repeat. Other times I quite like listening to podcasts or audiobooks. And a set of noise cancelling headphones are just better for that in a loud environment than trying to turn the volume up really high so you hear it over the other noise.

ROBYN - Oh yeah, when I went to Japan recently, like for the first few days I found it so overwhelming, then I remembered about listening to music over and over again, rather than listening to a whole album, just one track over and over. And so I did that for a while in my hotel room all by myself and then I felt much better.

EMMA - Why is repetition important?

ROBYN - I think as it’s predictable.

JAMIE - Yeah, it adds structure and predictability and a little bit of an element of control, in that I might not be able to know when the next loud noise is going to come from outside, but I know where the drums are in this track and I know that there’s a certain bit of song coming up in a moment. It enables me to predict what’s going to happen, which in turn makes me feel more in control.

ROBYN - But I realise that neurotypical people often don’t do that, but I find it really important to spend some time on my own in my hotel room with the lights off. [laughs]

EMMA - What’s your favourite music?

ROBYN - Well, I like loads of music, but if you like, the stim track I currently have is Donna Summer’s ‘I Feel Love’.

JAMIE - I tend to listen to lots of stuff that’s acappella, so people singing or just vocals, so there’s a couple of YouTube channels that I quite like. One of them does ‘Sound of Silence’ by Simon and Garfunkel, and that is pretty powerful, but it also, because it’s all singing in kind of like lyrical ways it doesn’t sound like speech. So for example I could never listen to rap much because it sounds too much like talking and I’d be trying to listen to it like a conversation and thinking about how I’m going to respond, rather than realising that it’s a one way broadcast that I don’t have to respond to.

EMMA - You listen to rap and you feel like you need to answer?

JAMIE - Yes. It can be really, really annoying. I’ve heard things, it happens on the radio sometimes as well, where I’ll be sat and I’ll be half paying attention to something and someone on the radio will go, “What would you like for lunch?” and I’ll go, “Oh, I’d really like some pizza,” and then realise, oh sorry, that was just the radio. I’m really bad at telling the difference between what is information and what is a question.

EMMA - So if you were answering rap would you rap it?

JAMIE - No. I can’t rap, I just can’t rap, it sounds awful. But sometimes… What’s the one…? I was listening to someone like Eminem and he said something about, you know, whether or not it’s fair that his son couldn’t attend school. And I literally went, “Oh, that’s downright unfair, that’s not a…” Oh sorry, it’s a song. So yeah, it can get confusing sometimes.

[Jingle: You’re listening to 1800 Seconds on Autism]

JAMIE - We’re doing another phone out. We love these. Fritz Anderson is with us today. Hi, Fritz?

FRITZ - Hello there.

ROBYN - You sent us an email, Fritz, about stimming. It’s so brilliant that even though we’re speaking to you now Jamie’s going to read the first part of the email to us.

JAMIE - Oh, crikey. So the email reads, “I can suppress my most spectacular stims in public. I can’t help jiggling my knee and then as the day goes on, talking myself up at a dyadic volume.” And if I’m honest, I have no idea what that means.

FRITZ - Dyadic, it means face to face or as in ordinary conversation.

JAMIE - Oh, so it gets quite loud, as in the volume that we’re talking at now.

FRITZ - Yes.

JAMIE - Cool. Your email goes on to say. “Towards the end if agitated I’ll rub my hand between my knees. My limit at the office is a particular kind of clap.”

ROBYN - Fritz, could you describe your clapping stim please? And if it’s okay with you we’re going to join in as well.

FRITZ - Okay, good luck. It’s not a straight on clap. My hands are close to each other. I bend one hand down to strike the heel of the other and then alternate. It sounds like… [slapping sound] that.

EMMA - Okay, can we hear you doing it again, Fritz? You do it on the phone just, and we’ll have a listen.

FRITZ - Of course. [clapping]

JAMIE - That’s impressively fast.

EMMA - That’s really quick.

JAMIE - I saw your email this morning and I gave it a go in bed this morning, just as I was getting up and though oh, that’s cool, and then I found myself randomly doing it in the car on the way to the recording. So I think I’ve picked it up. It’s very satisfying.

FRITZ - Yes, it’s very satisfying and probably… You know, I shift my work schedule a little late by a couple of hours so that by the time my masking wears out the office is largely empty.

ROBYN - Masking is a phrase often used by autistic people and essentially what masking is is when you try to act in a way that other people won’t notice that you’re autistic. Would you say that’s right?

JAMIE - Trying to blend in and well, mask that you’re autistic and maybe be someone else for a bit that will attract less attention and negative comments.

ROBYN - Yeah.

FRITZ - Yes that’s right, and it can be something that’s moment to moment or a little longer term in suppressing or diminishing stims, and over the long term trying to keep a mental model of what normal people expect of you, hour after hour, day in and day out, it can be quite exhausting.

ROBYN - And if you have an explanation of your own you can email us, stim, that’s S-T-I-M, [email protected].

EMMA - I was trying that stim as well. Is it okay for someone who’s not autistic to try someone’s stim, if you’re doing it respectfully?

JAMIE - I’m good with that. What do you think, Fritz?

FRITZ - Yeah, I don’t have a commercial interest in it. [laughter]

JAMIE - I love the way you phrase things.

EMMA - Jamie, you said you were picking it up a bit. Does that happen? Do you pick up each other’s stims? Is that a thing?

ROBYN - Yeah, it’s definitely a thing. I went to Russia once and I met this lovely lady, she was very nice. Bit shout out to Veta, she was incredibly lovely, and I don’t think that she normally flaps, but I flap, and so we were flapping together. So she kind of caught my stim, but if anything I think it’s kind of flattering… not flattering, but it’s kind of empathy when somebody else does your stim with you if they are doing it to just enjoy stimming together.

EMMA - Yeah.

JAMIE - I’ve seen stims pass through the room, which was always quite entertaining. I was doing a talk at Autistic UK and I was talking about robot dogs, and the joke was that the next slide I have a dog in a onesie and I’m like the robot dogs are really scary but if we put them in these cute onesies they won’t be as scary. And that got a giggle and then a couple of people flapped and you could almost see the flap go from the front of the room to the back of the room.

ROBYN - Like a Mexican wave.

JAMIE - A Mexican wave of flaps which was quite satisfying. And I didn’t realise that I’d flapped on stage. So I’d kind of started it and then it had just kind of spread through the room. It was quite cool.

EMMA - That’s absolutely brilliant. So can we say goodbye and thank you so much to Fritz Anderson for his brilliant stuff?

ROBYN - Thanks, Fritz.

JAMIE - Thanks Fritz, it’s brilliant to talk to you.

FRITZ - It was great fun, thank you.

[Music]

ROBYN - Well, that’s almost the end of this series of 1800 Seconds on Autism. Look out for the one extra episode in June, but me and Jamie, we’ve enjoyed doing this series and we’d like to say thank you to all of you who’ve contributed because 1800 Seconds on Autism wouldn’t be the same without your contributions, because as you know when you’ve met one autistic person, you’re met one autistic person. Just like non autistic people, we’re all different from each other. Our email address, [email protected]. That’s spelt S-T-I-M, [email protected]. It’s still active and we’d love to hear from you. Remember to look out for the extra episode in June. Stay safe, stay healthy, and thanks for listening to 1800 Seconds on Autism. Bye.