This is a full transcript of When Cabin Fever met 1800 Seconds on Autism as first broadcast on 6 May. Presented by Emma Tracey
EMMA -Hello, and welcome to Cabin Fever. I'm Emma Tracey. Over the last few weeks we've all been experiencing highs and lows with Coronavirus and lockdown. I know I have. But how have autistic people been dealing with the Covid-19 pandemic and the restrictions it brings? As well as producing Cabin Fever I also look after the 1800 Seconds on Autism podcast with two autistic presenters, Robyn Steward and Jamie Knight.
[jingle: 1800 Seconds on Autism]
EMMA -We've been making some shorter episodes to find out how they've been getting on in isolation and we thought we'd bring a couple of chats to you this week on Cabin Fever. We recorded the first of these at the beginning of lockdown when really important routines were falling apart, and Jamie's pasta dish, which he ate every single day for five years couldn't be found.
JAMIE -When the lockdown happened all of my normal routines got broken. I lost my daily support and stuff like that, and the effect on me has been that it's cut my energy in half. You know, if I wake up at 11 am or so I'm probably back in bed at 8 pm because there's just so little energy to try and get anything done with. But I don't know about you, Robyn, as I've slowly got used to that amount of energy I've started finding new routines and kind of finding ways to make the most of the energy that I've got.
ROBYN -Yeah, I mean I think I haven't been very well really maybe since a week before the lockdown started, so I've been incredibly tired, but I have found new routines. So like the daily press conference and PM on Radio 4 starts at half past four now, so that there are some things that are routines, and then at about eight o'clock there's Coronavirus Festival run by Gig Buddies, they have two slots every night, 8 pm and 9 pm, so that's good. Gig Buddies, they work to match people with learning disabilities or autistic people who want to go out to gigs with people who have a similar interest in the type of music that they have.
JAMIE -It sounds like a lot of your routines are coming from external things. So things that are happening at a fixed time.
JAMIE -A lot of my new routines have been designed as new routines, so we have little whiteboards with all of the steps of the routine broken down, and then my friends are prompting me to follow them, or my friends are also still able to come across because they're carers and started showing symptoms of Covid-19. So since then our friends haven't come across but they're still continuing to prompt me over text messages and just asking me, "Have you done your morning routine?" Stuff like that.
a lot of people ask me how to establish a routine, and I have to keep reminding myself that the best routines are simple and followed every day and not add a million things to my routine. If all I've done is eat, do my teeth and had a wash, actually that's fine, I can add more complexity in the future. We can't actually get hold of the pasta that I've eaten for dinner every day for five years at the moment, so food is a little bit all over the place.
ROBYN -How are you managing without your pasta?
JAMIE -So, so. So… so, so, so, so, so. I've had the same pasta for years, and weirdly, it's a meal that I stopped liking probably about a year ago, but it was beneficial because it was so consistent and it was the thing that I expected and had every day. And that was more important than necessarily what it tasted like.
For the first few weeks friends were helping us every evening and the not knowing what was happening at dinner time was starting to get to me, so in recent weeks we've got a bunch of microwave meals and I've got two different microwave meals. One is a pasta carbonara and the other one is a ham tagliatelle and we're eating those and they are now filling in the same space. They don't have the same routine to them yet, but hopefully if we keep it going for a few months, hopefully they'll start having that same repeatability that the pasta had.
ROBYN -But what was the effect when you realised that you couldn't have the pasta that you normally have?
JAMIE -A year ago it would have broken me really badly but because I've got so much other structure in my life I was able to kind of deal with it without much of a problem. Has foodstuff affected you at all?
ROBYN -Well, I'm not sure whether it's because I'm ill or whether it's just because I need routine, but I've got a bit stuck on I'm having jam sandwiches for breakfast and lunch currently.
JAMIE -That sounds nice. I really like jam sandwiches. Is that a texture thing or a flavour thing or just because they're simple?
ROBYN -I think because they're simple and they're very consistent.
JAMIE -Are you entirely alone in your isolation?
JAMIE -That's both amazing and terrifying.
ROBYN -I mean, I can ring my parents several times a day and they're pretty good about using WhatsApp video now, and the lady above me, she's really nice, and she got me a loaf of bread from the supermarket. And yeah, I've got lots of friends that I can call.
EMMA -So we're about a month into this lockdown. At the moment, guys what would your top tips be for an autistic person or someone who's locked down with an autistic person?
ROBYN -I think have someone to very calmly help you when things go wrong, because like Jamie, I find it really difficult if there's a problem. I just get really stuck. I mean, I have that anyway but I mean, it's even worse now. So I have to try and do things that will avoid any kind of in the moment problem solving, and I suspect that many autistic people find the same thing.
So I think it's important that people that are supporting an autistic person, that they're really calm and that they know that if there's an autistic person in their life that's getting very distressed by a change or a problem not to take that distress personally because it's probably nothing to do with them and it's more that the person is just really struggling and if you just stay calm and prompt the person to overcome the problem rather than thinking, oh you should just be able to deal with this because you're however old. Because that's not very helpful.
EMMA -Okay. Jamie?
JAMIE -A technique that we use is called now, next and later. So I can't affect what's going to happen tomorrow or the day after, so my normal structure's gone away, but what I can do is I can have a feeling of control by controlling what happens now and what happens next. So at all times I have a now activity, such as recording a podcast, which is really well defined, and a next activity which is really well defined. So my next thing after recording the podcast is to eat some pasta for lunch. And then I have a vaguely defined thing for later, and that means that I'm only ever going from one concrete activity to another concrete activity and in a way I always know what's coming next, and it very rarely changes. So it helps me to feel more in control when things are out of control, and it also helps me to be a little bit more flexible.
ROBYN -Are you going to think about, while you're eating your lunch, what you're going to do after you've eaten lunch?
JAMIE -Exactly that, yeah. So my current now is record a podcast. My next is lunch. My later is do work. Before I consider the podcast task finished I'll have to decide what the work thing is, because it'll move from being later to next. And it's incredibly effective because if I'm floating around and I'm getting really distracted, if someone asks me, "What are you doing now? What are you doing next?" it can really help me to focus in and stop being so floaty.
[jingle: 1800 Seconds on Autism]
EMMA -I find Robyn and Jamie's musings endlessly fascinating and entertaining. I'll definitely be taking the now, next and later tips on board. I produce 1800 Seconds on Autism but when we started recording this next conversation I had absolutely no idea how it would play out. Hospital is super tricky and majorly anxiety provoking for lots and lots of autistic people. Here, Robyn manages a solo trip in an ambulance to A&E like an absolute boss.
ROBYN -Well, I think I've probably had Covid-19 for about a month. When I went to hospital they were really nice and I think I wasn't the only person going through this.
JAMIE -I don't think you've mentioned that you'd actually gone to hospital, Robyn?
ROBYN -Yeah, I went to hospital but I mean I wasn't…
JAMIE -Wow, that's… that's… that's big.
ROBYN -Yeah, but I wasn't dying or anything and I did tell them that, but I'd spoken to my GP several times and they'd said about ringing an ambulance if my breathlessness got worse. And I went through the 111 checklist because I didn't feel like calling an ambulance was really… You know, I didn't really agree with that advice but there didn't seem to be any other advice. And because I live on my own I was just a bit worried that if the breathlessness got worse and I was on my own that I might not be able to make a phone call. And I didn't really know what else to do.
JAMIE -That sounds like a terrifying situation. You're trapped in that thing of like, if I jump early and I'm wrong I feel like I'm wasting somebody's time, but if I leave it too late I might die.
ROBYN -Yeah, I mean it turns out I wasn't wasting their time, like, because I was following the guidance.
JAMIE -Exactly, but when it's a situation that's a bit wobbly and you're trying to work out what you should do but the rules aren't particularly clear it can be very difficult.
ROBYN -Because normally I'd just go to a walk in centre. Really what I wanted to do was just to ask a doctor to listen to my chest because if it was noisy I'd know that I had a chest infection and maybe there was something I could do about that because breathlessness is a normal Covid-19 symptom. I was more worried about having a bacterial infection like pneumonia because that's so common.
EMMA -Robyn, you did all this by yourself. What about the sensory overload and all that?
ROBYN -Well, I had my noise cancelling headphones and I had my phone. And I wasn't there very long, I was only there for like four or five hours, it wasn't long. And they put me in a room with walls, which was really good.
JAMIE -That's very, very nice of them.
EMMA -Why was that such a good thing, a room with walls?
ROBYN -Well, because walls can block sound so it's not so loud.
JAMIE -Yeah, nice small room rather than being in a giant hallway or some… Well, I find at least if I'm in a space that's really loud but also really big it distorts all of the sound which makes it even worse.
JAMIE -Did you tell them from the very get go that you were autistic?
JAMIE -Because then they can do something about it. Do you ever worry that if you tell someone you're autistic they're going to have some really bad understanding of what autism is and then be like, "Okay, I'll go and get you some Lego then?" And it's like no, I need to talk to somebody, not a pile of Lego thank you very much.
ROBYN -I tell people what that means for me, so they'll say, "Do you have any other medical conditions?" and I'll say, "Well, I'm autistic and I need you to be really clear and direct with me and don't just put a needle in me suddenly, you need to give me plenty of warning."
JAMIE -Because I get so spaced out so quickly the first thing I lose is my ability to communicate. So I suppose I've never been in the situation where I've had the choice to go, "Oh, by the way, I'm autistic," it's almost like everybody looks at me and goes, "Well, there's something wrong there and I wonder what that is," and then they start playing a guessing game so whoever's with me has to go, "Jamie is autistic but he'll understand what you say, just here are some rules." And it's one of the reasons why I'd never go into a medical setting on my own. Robyn, I am so impressed. And also, you're somebody that I really like and it's actually quite emotional to hear that you ended up in hospital and you had to have it checked and stuff. And I don't know, don't die, I'd be very upset.
EMMA -There's a story getting bigger and bigger about face coverings and that feels like something that might impact autistic people quite a lot.
ROBYN -It could be very positive for autistic people because it might mean that people won't be expecting as much of people reading your facial expression because half your face is covered.
JAMIE -Well, I actually do a lot of lip reading, especially if it's in a loud or a busy place. I can't necessarily hear every word, or if I can hear it it's too loud or too distorted. So I actually, thinking about it, if someone's got a mask on they're muffled and I can't see their lips, that might actually make life a bit tricky in situations. I've never worn one yet.
ROBYN -I had to wear one.
JAMIE -You had to wear one in hospital? How did that go?
ROBYN -When the paramedic turned up, when she was two meters away from me she had to hand me a face mask, which, you know, I wasn't expecting that. I felt like I hadn't had the right training for it which I know that sounds a bit weird, but when I ate and drank obviously I had to pull the mask down and I didn't really know how to do that to avoid contamination. It didn't really touch anywhere that irritated me, but I can imagine for some people a face mask from a sensory point of view might be a bit overwhelming. But maybe it's just getting one that's fitted properly and that doesn't irritate your sensory experiences. Just like with clothing, you know, some clothing is good and some clothing isn't good and it depends on the person.
EMMA -So we're a couple of weeks further on now. Robyn and Jamie, what would be your tip for autistic people in lockdown or for people supporting an autistic person during lockdown?
ROBYN -Have a list of activities that make you feel calm so that when you feel anxious you can do one of those activities and you don't have to think about what might be a calming activity if you're prepared the list, which could include pictures, beforehand.
JAMIE -I think my tip would be a little bit similar, which is sometimes when I'm feeling low on control and feeling that things are out of control, exerting control over things that I can control can make me feel a lot better. So whilst it's changed, rearranging my bedroom so that I can feel more in control of the environment can really help me to calm down and feel more at ease with the world. So in a weird paradoxical way, if you're feeling out of control and that everything is being changed around you, being the person to change a thing can help you feel more in control.
ROBYN -Before we go let's give a shout out to all the lovely listeners giving us feedback during these strange times.
JAMIE -Thanks to Richard Brewster. Richard is a secondary school teacher who found our podcast during the lockdown. Richard writes to us, "You have really made me think as a neurotypical person and it will profoundly influence my approach to teaching when we return to school. Thank you for opening the door on autism," which is a phrase I keep hearing that's really funny, it's like the autism's inside a cupboard. Hello autism, goodbye autism. "Your candid discussion and frank openness are so refreshing. I firmly believe that all teachers should listen to your show and I'll certainly be advocating for that to my colleagues," which is rather lovely.
[jingle: 1800 Seconds on Autism]
EMMA -If you're keen to hear more from Jamie and Robyn head on over to 1800 Seconds on Autism on BBC Sounds or wherever you get your podcasts from. The next episode has even more health stuff, including Jamie's trip to A&E which stopped him talking for four whole days. Do let us know how you're doing in these strange times. We're @bbcouch on Twitter. BBC Ouch on Facebook, or you can send us an email at firstname.lastname@example.org. We do read them all even if we don't get to respond to every single one.
Our other podcast - there is more - Isolation Diaries, follows Kate Monaghan's 12 week isolation with her wife, Holly and three and a half year old daughter. And of course there's a massive back catalogue of Ouch podcasts on BBC Sounds. Thanks for listening and we'll catch you back here again next week. Goodbye.