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Coronavirus extra: Now, next and later

Diet and daily routines have had to change during the lockdown

Robyn and Jamie are self-isolating which means that Routines have changed and support has reduced.

The pasta meal Jamie has eaten daily for five years can't be found, and Robyn's food habits have been affected too.

IN this short episode, the first of several coronavirus extra podcasts during this series, they share their experiences with their usual honesty and warmth. Listen out for two super helpful tips for getting through lockdown.

With Robyn Steward and Jamie Knight

Produced by Emma Tracey

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email stim@bbc.co.uk

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8 minutes

Transcript

This is a full transcript ofĚýthe 1800 Seconds on Autism coronavirus extra podcast: Now, next and later as released on 15 April 2002 and presented by

Robyn Steward and Jamie Knight.

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[Music]

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JAMIE - Hello, and welcome to 1800 Seconds on Autism. This is an extra shorter episode where we talk about what it’s like being autistic during the Covid-19 pandemic. I’m Jamie Knight.

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ROBYN - And I’m Robyn Steward. Emma, the producer is here with us too.

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EMMA - Hello.

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ROBYN - We’re recording this at home, so it might sound quite different to the longer episodes.

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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.

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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.

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JAMIE - It sounds like a lot of your routines are coming from external things. So things that are happening at a fixed time.

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ROBYN - Yes.

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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 we 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. And 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.

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ROBYN - How are you managing without your pasta?

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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.

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ROBYN - But what was the effect when you realised that you couldn’t have the pasta that you normally have?

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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?

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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.

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JAMIE - That sounds nice. I really like jam sandwiches. Is that a texture thing or a flavour thing or just because they’re simple?

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ROBYN - I think because they’re simple and they’re very consistent.

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JAMIE - Are you entirely alone in your isolation?

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ROBYN - Yeah.

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JAMIE - That’s both amazing and terrifying.

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ROBYN - I mean, I can ring my parents several times a day and they’re pretty good about using the 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.

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[Music]

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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?

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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.

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EMMA - Okay. Jamie?

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JAMIE - A technique that we use is called now, next and later. So I can’t affect what’s going to happen in the 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.

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ROBYN - Are you going to think about, while you’re eating your lunch, what you’re going to do after you’ve eaten lunch?

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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.

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ROBYN - That’s it for this special Covid-19 episode of 1800 Seconds. What impact is the pandemic and lockdown having on you and your household? Let us know by emailing stim@bbc.co.uk. We do read them all, even if we can’t respond to every single one.

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JAMIE - Thanks for listening. Stay safe, stay healthy, and we’ll be back soon with another episode of 1800 Seconds on Autism. Bye.

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ROBYN - Bye.

Ěý

[JINGLE: Time’s up. That was 1800 Seconds on Autism]

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