91热爆

This is a full transcript of 1800 Seconds on Autism Coronavirus Extra as first broadcast on 20 July. Presented by Jamie Knight and Robyn Steward

听

听

JAMIE -Hello, and welcome to a Coronavirus extra episode of 1800 Seconds on Autism. I鈥檓 Jamie Knight.

听

听

ROBYN - And I鈥檓 Robyn Steward, and with us is Lion, Henry and our producer, Emma

听

听

EMMA -Hello.

听

听

JAMIE -Hi, Emma

听

听

ROBYN -This podcast is shorter than the main 30 minute episodes, and it鈥檚 being recorded from home. It focuses on how me and Jamie are, and how other autistic people are and how everyone is coping with COVID-19. Jamie, when I recorded the links last time you weren鈥檛 with us, and well, we missed you. What happened to you?

听

听

JAMIE -I just ran out of spoons and bandwidth. Between the drop in support and the finding a new normal and trying to keep on top of all the work demands I just hit zero on everything and I had to take a couple of weeks that were really simple, just to get back on my feet.

听

听

ROBYN -Well, I鈥檓 glad you鈥檙e back on your feet now.

听

听

JAMIE -Thank you.

听

听

ROBYN -So, before I get to talking about my exciting recent purchase how are we doing, or rather, what I鈥檓 actually asking, Jamie, is how are you doing?

听

听

JAMIE -It鈥檚 a bit of a mixed one. So at the start of the lockdown I lost all of my support, like my day to day support, and that really broke me very badly, I lost most of my energy for about three weeks. And since then it鈥檚 all been about recovery and putting in place new support and new routines. And it鈥檚 been a full on struggle. There鈥檚 been the physical struggle of just getting enough energy to get all the things done to remain living independent and autonomously, but then there鈥檚 also just the mental health struggle of almost constantly needing to remain positive and upbeat and not let the frustrations get to the top of me.

So with that in mind the day to day stability鈥檚 pretty good, but the real struggle has been being productive and being able to work, because I almost always, as everybody who listens to the podcast knows I work from the local caf茅 and then my cupboard, I really can鈥檛 get my brain to switch into work mode at home. So I鈥檓 really struggling to get into flow, and I think it鈥檚 going to continue to be a struggle until the caf茅 reopens. You know, most mornings I don鈥檛 know if I鈥檓 going to be verbal that day until I wake up. Some days I wake up at 7 am, I find that I can鈥檛 get any words out at all, and I sleep for another five hours before I鈥檝e got any working speech. So trying to plan a work schedule around that is extremely tricky. So I鈥檝e kind of changed my focus from, initially it was being stable, then it moved to trying to be productive, now my focus is more on just maintaining my health, both mental health and physical health until the lockdown ends, so that by the time it ends I can get back to a productive life much like the one I had before lockdown.

听

听

[music]

听

听

JAMIE -Robyn, you鈥檝e mentioned you鈥檝e got a recent purchase. What is it?

听

听

ROBYN -It鈥檚 a bike.

听

听

JAMIE -Woo! Woops, sorry, I think I just broke my microphone. That鈥檚 fantastic! What did you buy? Where are you riding it? Oh, tell me all the details?

听

听

ROBYN -It鈥檚 a hybrid, which means for those of you who don鈥檛 know about bikes it鈥檚 between a road bike and a mountain bike. And I bought it originally because I just wanted to do some exercise and I thought I鈥檇 cycle around the park because I found a cycle path, but actually it鈥檚 become quite life changing, because it used to take me eight minutes to walk to the supermarket and eight minutes back. I couldn鈥檛 always do that, and now it takes mostly three minutes there and three minutes back.

听

听

JAMIE -Does the world feel a little bit bigger, so to speak?

听

听

ROBYN -Yeah, for the first two months of lockdown my world was 0.3 of a mile. Like it was small. And now I can go to Wandsworth, I can go to Tooting, I can go to Wimbledon, I can go to Clapham Junction. I can pick up an Indian takeaway. I鈥檓 actually quite enjoying it.

听

听

JAMIE -How do you handle things like navigation? How do you know where you鈥檙e going?

听

听

ROBYN -Well, I can鈥檛 really use a map because I don鈥檛 really understand the blue dot, I get confused by it, and so I have to pick a landmark and then I head to that landmark. So like in Tooting my landmark was Wilco鈥檚. It鈥檚 pretty much a straight line to get there, and then when I went to Wimbledon I was focused on Wimbledon Broadway, I just looked at it on Google Maps and used Google Street View and things like that to find things to look out for. And I still get lost, but鈥�

听

听

JAMIE -One of the biggest challenges for me is staying safe, so have you done anything to make sure that you鈥檙e safe when you鈥檙e out cycling?

听

听

ROBYN -I鈥檝e got a safety wing. I don鈥檛 know how you describe it. It鈥檚 a bit like a spatula. It鈥檚 orange, and it has a reflector on it. And it鈥檚 sort of an arm so when you鈥檙e going to be cycling on a road you can bend it out and then it just means cars stay a bit further away from you. So I can鈥檛 really judge distances, the world for me is quite flat, so when I learn a route I have to do it in small stages because I have to really know it like the back of my hand. And when I come across new junctions I often have to get off and use the pedestrian crossing until I understand the layout of the junction, because I can鈥檛 rely on my depth perception so I have to actually be able to walk over the junction to work out how big it is and how long it would take. And I found cars were getting, I felt, too close to me, and I felt like if I went over a pothole I鈥檇 just wobble and I could easily wobble into the car, so the spatula arm thing just means that people are aware of how much room I might actually need.

听

听

JAMIE -That鈥檚 a great idea. Do you know what? I kind of want one, because one of the reasons I don鈥檛 ride on the road is that my brain will not follow the side of the road, so what will happen is I鈥檒l be going along and I鈥檒l slowly drift out into the traffic until something in my brain wakes me up and brings me back to the side. But as I get tired I鈥檓 very bad at judging my own safety, so 90% of my cycling, and I鈥檝e cycled over 400 kilometres since lockdown started, it鈥檚 like 250 miles, almost all of it has been inside parks and inside fields and places like that. I鈥檓 not doing so well with using my bike as a mode of transport, mostly it鈥檚 a way to explore things. But, you know, something like that might work really well for me.

听

听

ROBYN -You know how some cars have that beep thing when you get too close to something, it鈥檒l go beep, beep, beep, beep, beep, beep, beep, beep, beep. Maybe you could have something like that for your bike?

听

听

JAMIE -It wouldn鈥檛 work for me because the noise of that beeping thing would make me fall off. I can鈥檛 predict what other people are going to do, so I often find myself in dangerous situations because it was a complete surprise to me that they turned. Or I misread something on the road or simply I was paying as much attention as I had available and I simply didn鈥檛 notice the car or I didn鈥檛 see something that was moving. Or another example is where you were saying about estimating distances, I try and estimate speeds so that, you know, I go around a parked car or something, but it takes me like half a second to estimate, okay they鈥檙e doing about 20 miles an hour, I鈥檓 doing about 10 miles an hour, I have about four and a half seconds to get around this parked vehicle. And by the time my brain has processed that I鈥檝e already been hit by the car.

听

听

[music]

听

听

EMMA -How many times have you been hit by a car?

听

听

JAMIE -Six or seven? I鈥檝e been hit by Transits. When I was in, was it supported living or foster care, I can鈥檛 remember, I came home one day and the people found me just lying on the lounge floor saying, 鈥淥w,鈥� and they were like, 鈥淲here鈥檚 your bike?鈥� I was like, 鈥淚 don鈥檛 know.鈥� And then I kind of went down and I came down the following morning and I was just covered in bruises and some other person had found my bike at a junction. So they go like, 鈥淪o what happened?鈥� It turns out I got hit by a Transit van and I walked back and lied on the floor because it hurt. And I didn鈥檛 have the communication to explain to someone what had happened.

So in the end I think it was the friend of a friend of a friend had seen it happen and whatever. I鈥檝e been hit by鈥� When I used to cycle to school鈥� Before I went into foster care I used to cycle to school and I鈥檇 get knocked off my bike every six months in minor or major ways, but I kept doing it because I didn鈥檛 really understand the risk. That鈥檚 one of the ways in which being autistic has the biggest impact on my life, which is I鈥檓 verbal and when I鈥檓 verbal I sound very capable, but in that split moment where there鈥檚 some judgement that鈥檚 needed about whether to go round a bend or not around a bend or around a car or whether the car door鈥檚 going to open my brain can鈥檛 hold all those things at once and then it goes horribly wrong. So it鈥檚 kind of like the biggest frustration of my life is like surface level capability that then gets me into situations where I don鈥檛 have sufficient support to be safe.

听

听

EMMA -Oh, gosh. What would your advice be for autistic people now as lockdown鈥檚 starting to ease?

听

听

ROBYN -I would say that it might not always be helpful to be like, well when things get back to normal, thinking in that way, that maybe it鈥檚 good to just be like okay, well actually three months ago the world changed and we鈥檝e sort of started on a clean sheet of paper and although that might seem a bit scary it also allows us to sort of reinvent our lives to be more friendly to ourselves and kind to ourselves. Because I think that sometimes, and I think non autistic people have also felt this to a certain extent, that we put a lot of pressure on ourselves to do all these different things and actually it鈥檚 all right if we slow down and life is a bit slower.

听

听

JAMIE -So one of the things that we鈥檝e been looking at is for a while we鈥檝e drawn a distinction between what I鈥檓 able to do, which is like the long list of everything it鈥檚 possible for me to do, what I鈥檓 capable of doing each day, which is the shorter list of what I鈥檓 able to do today, and then my capacity, which is how many of those things I can do. At the moment my capability and my capacity is reduced, so I鈥檓 capable of doing less things than I was before lockdown and I can鈥檛 do as many things because of reduced energy. So trying to plan my day with those things in mind. Now the good news is that I鈥檓 still able to do them, like I still have that skill, I鈥檓 just not able to use it right now, so that stops me from panicking and thinking that I鈥檝e lost skills that I鈥檒l never get back again. When times are better and when the energy is higher I will be me again, it will happen. So I just need to give it time.

听

听

ROBYN -Thank you for listening to this special COVID-19 episode of 1800 Seconds on Autism, and thank you for listening to all the other episodes too. We are delighted and overwhelmed by the sheer amount of positive feedback we鈥檝e been getting from educators, parents, autistic people and random other people, including maybe a few plushies.

听

听

JAMIE -Our email address, stim@bbc.co.uk is still active and checked regularly, so feel free to get in touch.

听

听

ROBYN -Thanks for listening. Bye.

听

听

[music]

听

听

EMMA -Hi, this is Emma Tracey, 1800 Seconds on Autism Producer, and I鈥檓 here to tell you that we are working on a brand new series of the podcast. The first full length episode of that series will be with you in late summer, early autumn. We鈥檝e been hearing that this podcast is particularly useful to some of you at the moment, so we鈥檙e glad to be able to bring you more episodes sooner rather than later. Thanks for listening and we鈥檒l talk to you again really soon.

听