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Coronavirus Extra: Autism at the A&E

When Robyn attended hospital with Covid-19 symptoms

What if you are autistic and get Covid-19 symptoms? For Robyn, previous hospital visits have been tricky and caused great anxiety.

On this shorter episode, with her doctor's surgery closed, Robyn tells Jamie about her solo visit to A&E in an ambulance to get checked out.

They discuss when and how to let A&E staff know you are autistic, why walls are better than curtains and the pros and cons of wearing a face mask.

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 of听the 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.

[Music]

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

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

EMMA - Hello.

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

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鈥檚 cut my energy in half. You know, if I wake up at 11 am or so I鈥檓 probably back in bed at 8 pm because there鈥檚 just so little energy to try and get anything done with. But I don鈥檛 know about you, Robyn, as I鈥檝e slowly got used to that amount of energy I鈥檝e started finding new routines and kind of finding ways to make the most of the energy that I鈥檝e got.

ROBYN - Yeah, I mean I think I haven鈥檛 been very well really maybe since a week before the lockdown started, so I鈥檝e 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鈥檆lock there鈥檚 Coronavirus Festival run by Gig Buddies, they have two slots every night, 8 pm and 9 pm, so that鈥檚 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.

ROBYN - Yes.

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鈥檙e carers. And we started showing symptoms of Covid-19. So since then our friends haven鈥檛 come across but they鈥檙e still continuing to prompt me over text messages and just asking me, 鈥淗ave you done your morning routine?鈥 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鈥檝e done is eat, do my teeth and had a wash, actually that鈥檚 fine, I can add more complexity in the future. We can鈥檛 actually get hold of the pasta that I鈥檝e 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鈥 so, so, so, so, so. I鈥檝e had the same pasta for years, and weirdly, it鈥檚 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鈥檝e got a bunch of microwave meals and I鈥檝e got two different microwave meals. One is a pasta carbonara and the other one is a ham tagliatelle and we鈥檙e eating those and they are now filling in the same space. They don鈥檛 have the same routine to them yet, but hopefully if we keep it going for a few months, hopefully they鈥檒l start having that same repeatability that the pasta had.

ROBYN - But what was the effect when you realised that you couldn鈥檛 have the pasta that you normally have?

JAMIE - A year ago it would have broken me really badly but because I鈥檝e 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鈥檓 not sure whether it鈥檚 because I鈥檓 ill or whether it鈥檚 just because I need routine, but I鈥檝e got a bit stuck on I鈥檓 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鈥檙e simple?

ROBYN - I think because they鈥檙e simple and they鈥檙e very consistent.

JAMIE - Are you entirely alone in your isolation?

ROBYN - Yeah.

JAMIE - That鈥檚 both amazing and terrifying.

ROBYN - I mean, I can ring my parents several times a day and they鈥檙e pretty good about using the WhatsApp video now, and the lady above me, she鈥檚 really nice, and she got me a loaf of bread from the supermarket. And yeah, I鈥檝e got lots of friends that I can call.

[Music]

EMMA - So we鈥檙e about a month into this lockdown. At the moment, guys what would your top tips be for an autistic person or someone who鈥檚 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鈥檚 a problem. I just get really stuck. I mean, I have that anyway but I mean, it鈥檚 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鈥檚 important that people that are supporting an autistic person, that they鈥檙e really calm and that they know that if there鈥檚 an autistic person in their life that鈥檚 getting very distressed by a change or a problem not to take that distress personally because it鈥檚 probably nothing to do with them and it鈥檚 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鈥檙e however old. Because that鈥檚 not very helpful.

EMMA - Okay. Jamie?

JAMIE - A technique that we use is called now, next and later. So I can鈥檛 affect what鈥檚 going to happen in the tomorrow or the day after, so my normal structure鈥檚 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鈥檓 only ever going from one concrete activity to another concrete activity and in a way I always know what鈥檚 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鈥檙e eating your lunch, what you鈥檙e going to do after you鈥檝e 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鈥檒l have to decide what the work thing is, because it鈥檒l move from being later to next. And it鈥檚 incredibly effective because if I鈥檓 floating around and I鈥檓 getting really distracted, if someone asks me, 鈥淲hat are you doing now? What are you doing next?鈥 it can really help me to focus in and stop being so floaty.

ROBYN - That鈥檚 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鈥檛 respond to every single one.

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

ROBYN - Bye.

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

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