diff --git "a/Transcipts_base/1800SecondsOnAutism.mp3.json" "b/Transcipts_base/1800SecondsOnAutism.mp3.json" new file mode 100644--- /dev/null +++ "b/Transcipts_base/1800SecondsOnAutism.mp3.json" @@ -0,0 +1,3957 @@ +[ + { + "start": 0.0, + "end": 2.0, + "text": " This is the BBC." + }, + { + "start": 16.8, + "end": 18.72, + "text": " Just check that over. That your..." + }, + { + "start": 18.72, + "end": 19.68, + "text": " Your cryptic..." + }, + { + "start": 19.68, + "end": 21.84, + "text": " ...piston case, I've forgotten what I'm doing." + }, + { + "start": 21.84, + "end": 22.88, + "text": " Great!" + }, + { + "start": 22.88, + "end": 25.28, + "text": " So, hello and welcome to Podcasting House." + }, + { + "start": 25.28, + "end": 27.2, + "text": " And here we are again. I've got Eli with me." + }, + { + "start": 27.2, + "end": 27.68, + "text": " Hello!" + }, + { + "start": 27.68, + "end": 28.88, + "text": " And I am Rianne." + }, + { + "start": 28.959999999999997, + "end": 32.96, + "text": " And every week we bring you an episode from the vast range of" + }, + { + "start": 32.96, + "end": 36.879999999999995, + "text": " rather marvellous BBC podcasts and we'll put one up into this feed." + }, + { + "start": 36.879999999999995, + "end": 41.519999999999996, + "text": " You can decide if you like it and then go away and subscribe and via BBC Sounds." + }, + { + "start": 41.519999999999996, + "end": 43.04, + "text": " So it's Eli's turn." + }, + { + "start": 43.04, + "end": 43.92, + "text": " What have you got?" + }, + { + "start": 43.92, + "end": 46.08, + "text": " I've got 1800 seconds." + }, + { + "start": 46.08, + "end": 50.08, + "text": " That's half an hour for those of you counting on autism." + }, + { + "start": 50.8, + "end": 55.120000000000005, + "text": " We featured an episode on Podcasting House some time ago" + }, + { + "start": 55.919999999999995, + "end": 58.32, + "text": " with these two presenters, Robin and Jamie." + }, + { + "start": 58.32, + "end": 63.599999999999994, + "text": " And I shouldn't forget Lianne, who did an episode of the Outch podcast" + }, + { + "start": 64.47999999999999, + "end": 66.8, + "text": " about autism, the two autistic presenters." + }, + { + "start": 66.8, + "end": 72.96, + "text": " And they sort of talked about what it's like to be someone with autism from" + }, + { + "start": 72.96, + "end": 74.88, + "text": " their two specific angles." + }, + { + "start": 75.44, + "end": 79.12, + "text": " So it wasn't somebody kind of investigating the phenomenon of autism and" + }, + { + "start": 79.12, + "end": 80.4, + "text": " talking to experts and things like that." + }, + { + "start": 80.4, + "end": 81.75999999999999, + "text": " It was just two of them talking." + }, + { + "start": 82.4, + "end": 84.8, + "text": " And we loved it so much." + }, + { + "start": 84.8, + "end": 86.32, + "text": " We thought there should just be more of them." + }, + { + "start": 86.32, + "end": 87.11999999999999, + "text": " We did." + }, + { + "start": 87.11999999999999, + "end": 89.28, + "text": " And now there are more of them." + }, + { + "start": 89.28, + "end": 90.0, + "text": " It's magic." + }, + { + "start": 90.0, + "end": 94.64, + "text": " Yeah, it's a really, really cool 1800 seconds on autism." + }, + { + "start": 94.64, + "end": 98.96, + "text": " Hey guys, before this podcast starts, there's a trumpet coming just so you know." + }, + { + "start": 98.96, + "end": 100.0, + "text": " Turn your volume down a bit." + }, + { + "start": 101.19999999999999, + "end": 102.0, + "text": " True, do it then." + }, + { + "start": 102.72, + "end": 105.28, + "text": " 1800 seconds on autism." + }, + { + "start": 105.28, + "end": 107.75999999999999, + "text": " With Robin Stewart and Jamie Knight." + }, + { + "start": 107.75999999999999, + "end": 109.2, + "text": " Are you going to cook a meal tonight?" + }, + { + "start": 109.2, + "end": 111.67999999999999, + "text": " Yeah, I think that's going to cost two spoons to be honest." + }, + { + "start": 111.67999999999999, + "end": 112.32, + "text": " Oh, okay." + }, + { + "start": 112.39999999999999, + "end": 113.19999999999999, + "text": " There's a lot of spoons." + }, + { + "start": 113.19999999999999, + "end": 114.47999999999999, + "text": " So I've got any spoons left now." + }, + { + "start": 117.52, + "end": 120.32, + "text": " So I pulled it out and threw it on the floor and then was like," + }, + { + "start": 120.32, + "end": 123.44, + "text": " wait, now the fire's out of the other and that's probably not a good idea." + }, + { + "start": 126.32, + "end": 129.35999999999999, + "text": " My parents knew as soon as they saw me, definitely something wrong with you" + }, + { + "start": 130.07999999999998, + "end": 134.48, + "text": " because you've gone gray and you're not speaking very much." + }, + { + "start": 137.92, + "end": 140.32, + "text": " Welcome to 1800 seconds on autism." + }, + { + "start": 140.88, + "end": 144.48, + "text": " The name might give it away, but I'm just going to say it anyway," + }, + { + "start": 144.48, + "end": 148.72, + "text": " that this is a program about autistic life presented by two autistic people." + }, + { + "start": 148.72, + "end": 150.0, + "text": " I'm Robin Stewart." + }, + { + "start": 150.0, + "end": 151.04, + "text": " And I'm Jamie Knight." + }, + { + "start": 151.04, + "end": 154.64, + "text": " Although most people know me as Jamie in line and I should probably" + }, + { + "start": 154.64, + "end": 155.84, + "text": " use Lion." + }, + { + "start": 155.84, + "end": 159.76, + "text": " So Lion is a four-foot-long plushy toy that goes everywhere with me." + }, + { + "start": 159.76, + "end": 160.48, + "text": " He's really lovely." + }, + { + "start": 160.48, + "end": 161.12, + "text": " He's here now." + }, + { + "start": 161.12, + "end": 164.88, + "text": " He's waving all the listeners, which you know, it doesn't really make sense for a podcast." + }, + { + "start": 164.88, + "end": 166.48, + "text": " And the end of the loaps, he's waving at the end of the loop." + }, + { + "start": 166.48, + "end": 168.24, + "text": " Oh yeah, he really loves a good end of the loop." + }, + { + "start": 168.32000000000002, + "end": 170.8, + "text": " Lion is about four-foot-long and he goes everywhere with me." + }, + { + "start": 170.8, + "end": 172.0, + "text": " Big, fluffy lion." + }, + { + "start": 172.0, + "end": 175.60000000000002, + "text": " And he's one of the ways I approach interacting with the world as an autistic person." + }, + { + "start": 175.60000000000002, + "end": 178.08, + "text": " But of course, not all autistic people are the same." + }, + { + "start": 178.08, + "end": 178.8, + "text": " Yep." + }, + { + "start": 178.8, + "end": 181.84, + "text": " And we have our neurotypical support person." + }, + { + "start": 181.84, + "end": 184.56, + "text": " Well, he's actually Jamie's neurotypical support person, Ollie." + }, + { + "start": 184.56, + "end": 185.28, + "text": " Hello, Ollie." + }, + { + "start": 185.28, + "end": 185.76000000000002, + "text": " Hello." + }, + { + "start": 186.88, + "end": 189.52, + "text": " So Ollie is part of my autistic life." + }, + { + "start": 189.52, + "end": 193.92000000000002, + "text": " So whereas, for example, a lot of people find it easy to go to" + }, + { + "start": 193.92000000000002, + "end": 195.92000000000002, + "text": " loud places or busy places, I really struggle." + }, + { + "start": 196.72, + "end": 199.44, + "text": " So we say that Ollie's job is to make sure that I'm not on fire." + }, + { + "start": 199.44, + "end": 200.72, + "text": " Am I not on fire?" + }, + { + "start": 200.72, + "end": 201.83999999999997, + "text": " Currently, yes." + }, + { + "start": 201.83999999999997, + "end": 202.23999999999998, + "text": " Good." + }, + { + "start": 203.44, + "end": 206.23999999999998, + "text": " But he also starts mission getting run over and ending up in the wrong place" + }, + { + "start": 206.23999999999998, + "end": 208.0, + "text": " backwards upside down on on fire." + }, + { + "start": 208.0, + "end": 210.07999999999998, + "text": " And our producer, Damon, is here." + }, + { + "start": 210.07999999999998, + "end": 210.72, + "text": " Hello." + }, + { + "start": 210.72, + "end": 213.11999999999998, + "text": " And he'll be wandering in and out as we record." + }, + { + "start": 213.67999999999998, + "end": 216.48, + "text": " In future editions, we'll be having all sorts of guests," + }, + { + "start": 216.48, + "end": 219.35999999999999, + "text": " doing a bit of music because Robyn is very musically talented." + }, + { + "start": 219.35999999999999, + "end": 221.2, + "text": " And we're going to be playing with some gadgets." + }, + { + "start": 221.2, + "end": 223.51999999999998, + "text": " But on this programme, we're just going to introduce ourselves," + }, + { + "start": 223.52, + "end": 226.4, + "text": " have a chat, settle into this slightly unfamiliar studio." + }, + { + "start": 226.96, + "end": 230.0, + "text": " And we'd like you to stay tuned because we're going to talk a bit about sensory stuff" + }, + { + "start": 230.0, + "end": 232.48000000000002, + "text": " and what is and isn't autism friendly." + }, + { + "start": 232.48000000000002, + "end": 235.52, + "text": " So, Robyn, the question that the producers of this programme want to know is," + }, + { + "start": 235.52, + "end": 236.48000000000002, + "text": " Drumroll, please." + }, + { + "start": 236.48000000000002, + "end": 237.44, + "text": " Can I have a Drumroll?" + }, + { + "start": 237.44, + "end": 238.24, + "text": " Thank you." + }, + { + "start": 238.24, + "end": 238.72, + "text": " You ready?" + }, + { + "start": 239.68, + "end": 241.76000000000002, + "text": " Is this studio autism friendly?" + }, + { + "start": 241.76000000000002, + "end": 244.32000000000002, + "text": " Well, I prefer when the lights are off." + }, + { + "start": 244.32000000000002, + "end": 246.08, + "text": " Yeah, I think I prefer when the lights are off as well." + }, + { + "start": 246.08, + "end": 248.64000000000001, + "text": " Maybe we could ask Ollie if he could turn the lights off." + }, + { + "start": 248.64000000000001, + "end": 249.36, + "text": " Ollie is very nice." + }, + { + "start": 249.36, + "end": 251.04000000000002, + "text": " He's a very good friend of mine." + }, + { + "start": 251.04, + "end": 254.56, + "text": " He quite often helps me adapt environments so that they suit me better." + }, + { + "start": 254.56, + "end": 257.12, + "text": " And with the lights completely off, I think that's working better." + }, + { + "start": 257.12, + "end": 257.68, + "text": " Thanks, Ollie." + }, + { + "start": 258.56, + "end": 262.15999999999997, + "text": " Jamie, maybe you should have a wander round and check out the studio." + }, + { + "start": 262.15999999999997, + "end": 263.68, + "text": " This is, this is, honourate it." + }, + { + "start": 263.68, + "end": 266.0, + "text": " This is a thing I do when I'm getting used to places." + }, + { + "start": 266.0, + "end": 267.84, + "text": " It helps me get an idea of how big they are." + }, + { + "start": 267.84, + "end": 270.0, + "text": " So, I tend to wander around them and look at things." + }, + { + "start": 270.0, + "end": 272.4, + "text": " I'm going to take my headphones off so I won't get a hear you." + }, + { + "start": 272.4, + "end": 274.4, + "text": " So, this should be a blast." + }, + { + "start": 274.4, + "end": 276.15999999999997, + "text": " So, Jamie has taken his headphones off." + }, + { + "start": 277.04, + "end": 281.44, + "text": " And the thing that interests me first is that the glass is all funny angles." + }, + { + "start": 281.44, + "end": 283.36, + "text": " So, I'm running my fingers around the outside of the room." + }, + { + "start": 284.0, + "end": 285.6, + "text": " And I found the seam in the wall." + }, + { + "start": 285.6, + "end": 286.8, + "text": " I wonder what's behind there." + }, + { + "start": 287.92, + "end": 289.52000000000004, + "text": " And I'm just running my head around the outside." + }, + { + "start": 289.52000000000004, + "end": 291.20000000000005, + "text": " So, I get an idea from the sides of the space." + }, + { + "start": 291.76000000000005, + "end": 294.96000000000004, + "text": " And it also means that I tend to find things that I might not have noticed." + }, + { + "start": 294.96000000000004, + "end": 296.64000000000004, + "text": " So, I'm now stood behind Robin." + }, + { + "start": 296.64000000000004, + "end": 297.92, + "text": " I promise I won't eat you." + }, + { + "start": 297.92, + "end": 299.12, + "text": " Or eat him breakfast." + }, + { + "start": 299.12, + "end": 300.16, + "text": " That's good." + }, + { + "start": 300.16, + "end": 301.84000000000003, + "text": " There's a white board in here for some reason." + }, + { + "start": 302.40000000000003, + "end": 305.36, + "text": " Here's a sound desk and I'm not going to touch all the shiny tools." + }, + { + "start": 305.36, + "end": 306.56, + "text": " Is this helping Jamie?" + }, + { + "start": 306.56, + "end": 309.36, + "text": " I think it does. It helps me get an idea for the space." + }, + { + "start": 309.36, + "end": 311.12, + "text": " And we've already adjusted things like the lights." + }, + { + "start": 311.12, + "end": 313.12, + "text": " So, I'm going to pop my headphones back on" + }, + { + "start": 313.12, + "end": 314.72, + "text": " and then come back into the radio world." + }, + { + "start": 315.36, + "end": 319.52000000000004, + "text": " You're listening to 1800 Seconds on Autism." + }, + { + "start": 323.6, + "end": 326.40000000000003, + "text": " Recently, I read your blog on network autism" + }, + { + "start": 326.40000000000003, + "end": 328.0, + "text": " where you were talking about your support." + }, + { + "start": 328.88, + "end": 332.72, + "text": " And I know that you have paid support and support for friends." + }, + { + "start": 332.72, + "end": 336.8, + "text": " Maybe you could tell us more about what that means in your daily life." + }, + { + "start": 336.8, + "end": 338.16, + "text": " Yeah, sure." + }, + { + "start": 338.16, + "end": 340.40000000000003, + "text": " The way that they're really great actually." + }, + { + "start": 340.40000000000003, + "end": 343.12, + "text": " So, a couple of years ago, I got into a bit of a sticky situation." + }, + { + "start": 343.12, + "end": 346.40000000000003, + "text": " I was really struggling to live alone and I was very ill as I think, you know." + }, + { + "start": 346.40000000000003, + "end": 347.68, + "text": " And I got a flat nearby." + }, + { + "start": 348.24, + "end": 352.16, + "text": " And it was very quickly apparent that I wasn't going to live on my own." + }, + { + "start": 352.72, + "end": 354.96000000000004, + "text": " Weirdly, at first, they did all the support." + }, + { + "start": 354.96000000000004, + "end": 356.0, + "text": " But they needed help." + }, + { + "start": 356.0, + "end": 357.52000000000004, + "text": " So, we literally found a babysitter." + }, + { + "start": 357.52000000000004, + "end": 359.6, + "text": " We just went on to findababicitter.com and went," + }, + { + "start": 360.40000000000003, + "end": 362.72, + "text": " we've got a nautistic adult who needs help with dinner." + }, + { + "start": 362.72, + "end": 364.40000000000003, + "text": " We foundababicitter." + }, + { + "start": 364.40000000000003, + "end": 366.40000000000003, + "text": " And she came and started my evening routine." + }, + { + "start": 367.28000000000003, + "end": 370.88, + "text": " And then kind of over time, my evening routine evolves and I got paid support" + }, + { + "start": 370.88, + "end": 373.04, + "text": " to help me with dinner, bath," + }, + { + "start": 373.68, + "end": 375.68, + "text": " all that sort of stuff, laundry." + }, + { + "start": 375.68, + "end": 378.40000000000003, + "text": " And then my friends provide the more kind of adventure support." + }, + { + "start": 378.40000000000003, + "end": 380.96000000000004, + "text": " It's kind of important to me that my friends are friends, not carers." + }, + { + "start": 380.96000000000004, + "end": 384.0, + "text": " Do you ever get this with things where you find that the care element of a relationship" + }, + { + "start": 384.0, + "end": 385.36, + "text": " makes it a bit complicated?" + }, + { + "start": 386.8, + "end": 389.12, + "text": " I wouldn't use a friend as a carer." + }, + { + "start": 389.2, + "end": 392.08, + "text": " Because of that, because it's important to keep in separate." + }, + { + "start": 392.08, + "end": 393.6, + "text": " Do you mind having a babysitter?" + }, + { + "start": 393.6, + "end": 396.0, + "text": " Doesn't it make you feel like a child or you don't mind?" + }, + { + "start": 396.0, + "end": 397.92, + "text": " I don't mind. The lady was really nice." + }, + { + "start": 397.92, + "end": 399.28000000000003, + "text": " She worked in a special school." + }, + { + "start": 399.84000000000003, + "end": 403.28000000000003, + "text": " So, what she did is actually, in a way, a lot of, at that time," + }, + { + "start": 403.28000000000003, + "end": 405.92, + "text": " I really needed someone to help me structure things." + }, + { + "start": 405.92, + "end": 407.52, + "text": " And that's what she did all day at school." + }, + { + "start": 407.52, + "end": 410.72, + "text": " So, we put together routines, visual timetables, etc, etc." + }, + { + "start": 411.28000000000003, + "end": 415.04, + "text": " These days, I tend to use a more traditional care agency because I've got a care budget." + }, + { + "start": 415.36, + "end": 416.72, + "text": " And they're nice." + }, + { + "start": 416.8, + "end": 417.84000000000003, + "text": " It's a different thing." + }, + { + "start": 417.84000000000003, + "end": 419.92, + "text": " Professional care is different from friends." + }, + { + "start": 419.92, + "end": 424.0, + "text": " Over time, I'm looking forward to when the care is more isolated from friends." + }, + { + "start": 424.0, + "end": 426.72, + "text": " Because then I can, you know, have spent time with my friends being friends." + }, + { + "start": 427.84000000000003, + "end": 429.36, + "text": " Does that make sense?" + }, + { + "start": 429.36, + "end": 431.68, + "text": " Yeah. I don't really have a lot of care." + }, + { + "start": 431.68, + "end": 437.44000000000005, + "text": " I have lots of difficulties doing doing everyday things because of my..." + }, + { + "start": 437.44000000000005, + "end": 437.84000000000003, + "text": " I have..." + }, + { + "start": 438.96000000000004, + "end": 442.56, + "text": " Well, if you count autism as a disability, then I have 10 disabilities." + }, + { + "start": 442.56, + "end": 444.64000000000004, + "text": " But if you don't count autism, then I've got 9." + }, + { + "start": 444.64, + "end": 446.88, + "text": " Personally, I count autism, but not everybody would." + }, + { + "start": 446.88, + "end": 448.0, + "text": " Things like cooking." + }, + { + "start": 448.88, + "end": 453.59999999999997, + "text": " For a long time, I just sort of lived off ready meals or if my parents sent me a food parcel." + }, + { + "start": 453.91999999999996, + "end": 456.88, + "text": " But recently, I've been using a recipe box service." + }, + { + "start": 456.88, + "end": 459.52, + "text": " And that's been really helpful." + }, + { + "start": 459.52, + "end": 463.84, + "text": " I've tried a couple, but I can only really cope with six instructions." + }, + { + "start": 463.84, + "end": 465.12, + "text": " And they need to be clear." + }, + { + "start": 465.12, + "end": 471.28, + "text": " And I need photos that are big and taken with a bit of perspective," + }, + { + "start": 471.28, + "end": 475.76, + "text": " rather than taking as a bird's eye view, or as you would see it being a person doing a cooking." + }, + { + "start": 475.76, + "end": 476.55999999999995, + "text": " That's interesting." + }, + { + "start": 476.55999999999995, + "end": 478.64, + "text": " Cooking is this collection of steps, isn't it?" + }, + { + "start": 478.64, + "end": 480.88, + "text": " And then the instructions are never complete." + }, + { + "start": 481.52, + "end": 484.47999999999996, + "text": " Many years ago, I was living somewhere." + }, + { + "start": 484.47999999999996, + "end": 486.96, + "text": " And I'd been on trains a lot." + }, + { + "start": 486.96, + "end": 489.91999999999996, + "text": " And you get on a train, but really you get in a train?" + }, + { + "start": 489.91999999999996, + "end": 493.28, + "text": " Anyway, I'd been making these pizzas in a microwave." + }, + { + "start": 493.28, + "end": 497.2, + "text": " And this carrot, I say to the carrot, all these pizzas, they're bloody awful." + }, + { + "start": 497.2, + "end": 498.96, + "text": " They're so crunchy, they make my teeth hurt." + }, + { + "start": 498.96, + "end": 500.08, + "text": " I can't finish a whole one." + }, + { + "start": 500.56, + "end": 502.96, + "text": " Actually, if you're like, oh, well, you know, we know you like them," + }, + { + "start": 502.96, + "end": 504.56, + "text": " so try them for another day." + }, + { + "start": 504.56, + "end": 507.44, + "text": " And then finally, somebody stopped to watch what I was doing." + }, + { + "start": 507.44, + "end": 509.59999999999997, + "text": " And I'd confused in and on." + }, + { + "start": 509.59999999999997, + "end": 511.44, + "text": " So I was following the instructions to the letter." + }, + { + "start": 511.44, + "end": 513.6, + "text": " I was walking up to the microwave, opening the door," + }, + { + "start": 513.6, + "end": 517.4399999999999, + "text": " putting the pizza on top of the microwave, closing the door and turning on the microwave." + }, + { + "start": 517.4399999999999, + "end": 519.84, + "text": " Because I'd mixed up in and on from these trains." + }, + { + "start": 519.84, + "end": 521.1999999999999, + "text": " So I also get this thing where," + }, + { + "start": 521.1999999999999, + "end": 524.88, + "text": " unless instructions are incredibly clear and understand the concepts, I really struggle." + }, + { + "start": 525.76, + "end": 528.8, + "text": " With the cooking, I actually, I think I go the opposite way to you." + }, + { + "start": 529.76, + "end": 532.8, + "text": " I see cooking as a thing, I see food as a thing that has to happen." + }, + { + "start": 533.3599999999999, + "end": 536.3199999999999, + "text": " And I want to get it done and out the way as efficiently as possible." + }, + { + "start": 536.56, + "end": 540.4, + "text": " And I think if I had to prepare a meal every day, an evening meal," + }, + { + "start": 540.4, + "end": 544.4, + "text": " I probably wouldn't have the energy left to work and do the things I do well." + }, + { + "start": 544.4, + "end": 547.04, + "text": " So that's one of the reasons why we have support for it." + }, + { + "start": 547.04, + "end": 550.4799999999999, + "text": " Because they can do in 10 minutes, but it'll take me 45 minutes" + }, + { + "start": 550.4799999999999, + "end": 552.0799999999999, + "text": " and ruin me for the rest of the day." + }, + { + "start": 552.0799999999999, + "end": 554.3199999999999, + "text": " Yeah, I mean, cooking for me could be difficult," + }, + { + "start": 554.3199999999999, + "end": 557.8399999999999, + "text": " because, yeah, it does take up a lot of spoons." + }, + { + "start": 557.9200000000001, + "end": 559.52, + "text": " You know, it does take up a lot of..." + }, + { + "start": 559.52, + "end": 560.88, + "text": " Actually, I've got some spoons here." + }, + { + "start": 560.88, + "end": 561.84, + "text": " Shall we explain spoons?" + }, + { + "start": 561.84, + "end": 563.44, + "text": " Oh, yeah, explain spoons." + }, + { + "start": 563.44, + "end": 563.9200000000001, + "text": " Okay." + }, + { + "start": 566.4, + "end": 568.0, + "text": " So these are spoons." + }, + { + "start": 568.0, + "end": 571.12, + "text": " These are physical spoons, but spoons are actually in analogy." + }, + { + "start": 571.12, + "end": 573.84, + "text": " So let's pretend that we had a two-spoon day." + }, + { + "start": 573.84, + "end": 574.96, + "text": " I'm Satopasit, Robin." + }, + { + "start": 574.96, + "end": 575.52, + "text": " Hey, Robin." + }, + { + "start": 575.52, + "end": 576.24, + "text": " Hi." + }, + { + "start": 576.24, + "end": 579.0400000000001, + "text": " So if I've slept really well, I get 10 spoons a day," + }, + { + "start": 579.0400000000001, + "end": 580.72, + "text": " but let's pretend that Robin is slept well." + }, + { + "start": 580.72, + "end": 582.08, + "text": " Hey, Robin, here's two spoons." + }, + { + "start": 582.08, + "end": 582.5600000000001, + "text": " Thanks." + }, + { + "start": 584.24, + "end": 586.24, + "text": " Now, Robin's got the spoons because she slept well." + }, + { + "start": 586.32, + "end": 587.84, + "text": " And whatever she does during the day," + }, + { + "start": 587.84, + "end": 588.48, + "text": " costs spoons." + }, + { + "start": 588.48, + "end": 589.92, + "text": " So for example, hey, Robin," + }, + { + "start": 589.92, + "end": 591.28, + "text": " are you going to cook a meal tonight?" + }, + { + "start": 591.28, + "end": 593.76, + "text": " Yeah, I think that's going to cost two spoons, to be honest." + }, + { + "start": 593.76, + "end": 594.32, + "text": " Oh, okay." + }, + { + "start": 594.32, + "end": 595.2, + "text": " There's a lot of spoons." + }, + { + "start": 595.2, + "end": 596.8, + "text": " So I've got any spoons left now." + }, + { + "start": 596.8, + "end": 598.24, + "text": " So therefore, Robins run out of energy." + }, + { + "start": 598.24, + "end": 598.72, + "text": " Yeah." + }, + { + "start": 598.72, + "end": 599.52, + "text": " Do anything." + }, + { + "start": 599.52, + "end": 602.32, + "text": " So spoons are a metaphor for managing energy." + }, + { + "start": 602.32, + "end": 605.28, + "text": " I also was sometimes referred to it as like battery charge." + }, + { + "start": 605.28, + "end": 607.2, + "text": " And the thing about a lot of autistic people," + }, + { + "start": 607.2, + "end": 608.32, + "text": " and certainly myself," + }, + { + "start": 608.32, + "end": 611.76, + "text": " I, even if I sleep really well, I only get 10 spoons a day." + }, + { + "start": 611.76, + "end": 614.24, + "text": " And things like crossing the road might take half a spoon." + }, + { + "start": 614.24, + "end": 616.88, + "text": " Certainly getting here this morning took three spoons." + }, + { + "start": 616.88, + "end": 619.52, + "text": " So I need to very carefully manage that budget." + }, + { + "start": 619.52, + "end": 621.6800000000001, + "text": " It's a bit like miss spending by a pound" + }, + { + "start": 621.6800000000001, + "end": 624.16, + "text": " when you've got 10 pounds versus miss spending by a pound" + }, + { + "start": 624.16, + "end": 625.52, + "text": " when you've got 100 pounds." + }, + { + "start": 625.52, + "end": 627.2, + "text": " So that's what spoons are, if you're wondering." + }, + { + "start": 627.2, + "end": 629.76, + "text": " And we happen to have some spoons in the room right now." + }, + { + "start": 629.76, + "end": 631.44, + "text": " So I'll put these down, because they're quite loud." + }, + { + "start": 632.8, + "end": 636.08, + "text": " Yeah, so I only cook three nights a week," + }, + { + "start": 636.08, + "end": 637.52, + "text": " but it could be a little weekend." + }, + { + "start": 637.52, + "end": 638.72, + "text": " But then when I've done that," + }, + { + "start": 638.72, + "end": 641.04, + "text": " I really struggled to say, do the washing up or..." + }, + { + "start": 641.84, + "end": 644.0, + "text": " And it depends a lot on the recipe, like that." + }, + { + "start": 644.08, + "end": 646.56, + "text": " The recipes are sort of familiar things." + }, + { + "start": 648.0, + "end": 649.6, + "text": " They're a lot less work." + }, + { + "start": 650.24, + "end": 654.0, + "text": " A lot less spoons, like sausage and mashed potato," + }, + { + "start": 654.0, + "end": 658.32, + "text": " is less spoons because it has relatively small number of steps." + }, + { + "start": 658.32, + "end": 659.92, + "text": " And you don't have to wait for many things." + }, + { + "start": 659.92, + "end": 664.16, + "text": " That a lot of the recipes involved waiting are not they good at waiting." + }, + { + "start": 664.16, + "end": 666.72, + "text": " We should have a campaign for clearer instructions." + }, + { + "start": 666.72, + "end": 670.0, + "text": " Yeah, well, the one that also gets me is also, you know," + }, + { + "start": 670.0, + "end": 670.88, + "text": " doing till cooked." + }, + { + "start": 670.88, + "end": 672.32, + "text": " Well, what does cooked look like?" + }, + { + "start": 672.32, + "end": 673.76, + "text": " You mentioned sausage and mash." + }, + { + "start": 673.76, + "end": 675.76, + "text": " That's actually one of the meals I can make." + }, + { + "start": 675.76, + "end": 678.0, + "text": " But the way that I do it is I have the sausage stick." + }, + { + "start": 678.0, + "end": 680.0, + "text": " And it's a brown stick that's in my kitchen." + }, + { + "start": 680.0, + "end": 682.96, + "text": " And when the sausage is the same color as the brown stick, it's cooked." + }, + { + "start": 683.52, + "end": 686.0, + "text": " And that's kind of like my only real way of telling these things." + }, + { + "start": 686.56, + "end": 691.4399999999999, + "text": " Sausages are fine, easy, but only because the sausages I buy are really lean." + }, + { + "start": 691.4399999999999, + "end": 694.48, + "text": " And I don't mind if they're slightly burnt on the top," + }, + { + "start": 694.48, + "end": 697.28, + "text": " because that way I at least know that they're cooked properly." + }, + { + "start": 697.28, + "end": 700.24, + "text": " But I did once burn some mince in a bolognese," + }, + { + "start": 700.24, + "end": 701.28, + "text": " and that was pretty horrible." + }, + { + "start": 701.92, + "end": 703.68, + "text": " I set fire to a lump of lamb once." + }, + { + "start": 704.64, + "end": 705.76, + "text": " Which was slightly alarming." + }, + { + "start": 705.76, + "end": 708.48, + "text": " I had to call a friend and go, I had a small fire." + }, + { + "start": 708.48, + "end": 709.28, + "text": " How did you do it?" + }, + { + "start": 709.28, + "end": 710.24, + "text": " How did you catch?" + }, + { + "start": 710.24, + "end": 711.4399999999999, + "text": " I left it in an oven," + }, + { + "start": 712.72, + "end": 715.1999999999999, + "text": " and then kind of noticed fire coming out of the oven." + }, + { + "start": 715.1999999999999, + "end": 716.9599999999999, + "text": " Which didn't seem like a thing that should happen." + }, + { + "start": 717.68, + "end": 719.8399999999999, + "text": " So I pulled it out and threw it on the floor." + }, + { + "start": 719.8399999999999, + "end": 721.76, + "text": " And then was like, wait, now I'm just spreading the" + }, + { + "start": 721.76, + "end": 723.28, + "text": " now the fires out of the oven." + }, + { + "start": 723.28, + "end": 724.56, + "text": " That's probably not a good idea." + }, + { + "start": 725.28, + "end": 728.0799999999999, + "text": " So I threw a towel over it, which turns out to be the right thing to do," + }, + { + "start": 728.0799999999999, + "end": 728.8, + "text": " which was lucky." + }, + { + "start": 729.76, + "end": 731.5999999999999, + "text": " Do you know what a lamb afterwards was delicious?" + }, + { + "start": 731.5999999999999, + "end": 733.5999999999999, + "text": " But I probably shouldn't cook it that way in the future." + }, + { + "start": 734.56, + "end": 736.56, + "text": " Actually, since then, I've not cooked any lamb," + }, + { + "start": 736.56, + "end": 738.0, + "text": " because it's kind of terrified me of it." + }, + { + "start": 738.64, + "end": 740.0, + "text": " Chickens are another good point as well." + }, + { + "start": 740.0, + "end": 742.9599999999999, + "text": " And when they say, like, poke-kick it until the juices run clear," + }, + { + "start": 743.76, + "end": 745.8399999999999, + "text": " I don't have a clue what that means." + }, + { + "start": 745.8399999999999, + "end": 747.76, + "text": " It's like, do I pick it up and squeeze it?" + }, + { + "start": 747.76, + "end": 749.3599999999999, + "text": " I know I'm like meant to stab a hole in it." + }, + { + "start": 749.3599999999999, + "end": 750.4799999999999, + "text": " Do I stab a hole?" + }, + { + "start": 750.4799999999999, + "end": 752.8, + "text": " You know, there seems to be all this implied knowledge." + }, + { + "start": 752.8, + "end": 754.56, + "text": " Like, if you're stabbing a hole in it," + }, + { + "start": 754.56, + "end": 756.24, + "text": " you need to stab it in a certain place," + }, + { + "start": 756.24, + "end": 757.3599999999999, + "text": " or a certain hardness," + }, + { + "start": 757.44, + "end": 758.88, + "text": " or a certain type of fork." + }, + { + "start": 758.88, + "end": 763.12, + "text": " And in my day to day life, I can make more good in the world," + }, + { + "start": 763.12, + "end": 763.84, + "text": " because that's my goal." + }, + { + "start": 763.84, + "end": 765.76, + "text": " My goal is to make things good," + }, + { + "start": 765.76, + "end": 767.84, + "text": " you know, use my skills as much as I can." + }, + { + "start": 767.84, + "end": 769.92, + "text": " I don't have cooking skills. They're not there." + }, + { + "start": 769.92, + "end": 774.16, + "text": " So if I can use my technology skills to build things to help other autistic people," + }, + { + "start": 774.16, + "end": 776.72, + "text": " but I accept that somebody else is going to help me cook," + }, + { + "start": 776.72, + "end": 778.8000000000001, + "text": " or somebody will just cook it for me, that's fine." + }, + { + "start": 778.8000000000001, + "end": 781.12, + "text": " So I think we can agree that we've both had" + }, + { + "start": 781.12, + "end": 783.6800000000001, + "text": " difficulties with the instructions not being clear enough." + }, + { + "start": 783.6800000000001, + "end": 785.6800000000001, + "text": " Do you think there ought to be a campaign" + }, + { + "start": 785.68, + "end": 787.1999999999999, + "text": " or something to make them clearer?" + }, + { + "start": 787.1999999999999, + "end": 788.4799999999999, + "text": " See, there already is." + }, + { + "start": 788.4799999999999, + "end": 790.2399999999999, + "text": " And there's this thing called the Crystal Market." + }, + { + "start": 790.2399999999999, + "end": 792.16, + "text": " It's a standard for written communication." + }, + { + "start": 792.16, + "end": 794.2399999999999, + "text": " You can't have to see it on bank letters and stuff." + }, + { + "start": 794.2399999999999, + "end": 795.76, + "text": " And they certify things." + }, + { + "start": 795.76, + "end": 798.88, + "text": " But it's really hard to set these sort of clear language guidelines," + }, + { + "start": 798.88, + "end": 800.88, + "text": " because language maps to concepts." + }, + { + "start": 800.88, + "end": 802.56, + "text": " And if you don't understand the underlying concept," + }, + { + "start": 802.56, + "end": 804.4799999999999, + "text": " then the language will never make sense." + }, + { + "start": 804.4799999999999, + "end": 806.9599999999999, + "text": " Something that the government digital service do," + }, + { + "start": 806.9599999999999, + "end": 808.9599999999999, + "text": " who make all of the government websites." + }, + { + "start": 808.9599999999999, + "end": 811.76, + "text": " I think they have a list of all words" + }, + { + "start": 811.76, + "end": 814.0, + "text": " that are expected to be known by an eight-year-old." + }, + { + "start": 814.08, + "end": 817.04, + "text": " And they try and design everything to only use words from that list." + }, + { + "start": 817.04, + "end": 819.6, + "text": " And they have some really nice clear writing things." + }, + { + "start": 819.6, + "end": 822.24, + "text": " So all sentences under 25 words," + }, + { + "start": 822.24, + "end": 823.44, + "text": " you know, words from this list." + }, + { + "start": 823.44, + "end": 824.4, + "text": " So I think that helps." + }, + { + "start": 824.4, + "end": 827.2, + "text": " In fact, the digital communication guidelines" + }, + { + "start": 827.2, + "end": 830.56, + "text": " called the Wicag actually now from this year onwards" + }, + { + "start": 830.56, + "end": 833.52, + "text": " include simplified content as one of the success criteria." + }, + { + "start": 833.52, + "end": 835.52, + "text": " So, you know, autistic people are being listened to," + }, + { + "start": 835.52, + "end": 837.84, + "text": " but I don't know if there's any autistic involvement with Gleermark." + }, + { + "start": 838.56, + "end": 842.4, + "text": " Do you think that it would stop you eating a frozen pizza frozen?" + }, + { + "start": 842.4, + "end": 843.68, + "text": " I'm not sure if it would have," + }, + { + "start": 843.68, + "end": 845.76, + "text": " because at that time I was really struggling," + }, + { + "start": 845.76, + "end": 848.0, + "text": " and I'd inverted the words in and on in my head." + }, + { + "start": 848.56, + "end": 852.3199999999999, + "text": " So no amount of pointing out to me would have noticed it," + }, + { + "start": 852.3199999999999, + "end": 853.76, + "text": " because I'd misunderstood the concept." + }, + { + "start": 853.76, + "end": 855.6, + "text": " And I find this often happens to me." + }, + { + "start": 855.6, + "end": 857.92, + "text": " And for years, I thought that fireman Sam," + }, + { + "start": 857.92, + "end": 861.12, + "text": " the fire escaped, and he went and caught it and brought it home." + }, + { + "start": 861.12, + "end": 862.4, + "text": " Because if you watch the episode," + }, + { + "start": 862.4, + "end": 865.04, + "text": " there's nothing that actually stops you from believing that." + }, + { + "start": 865.04, + "end": 866.56, + "text": " And because he was a fireman," + }, + { + "start": 866.56, + "end": 868.56, + "text": " I assumed he would walk around on fire." + }, + { + "start": 869.1199999999999, + "end": 872.8, + "text": " So that sort of literalism can be very difficult to capture." + }, + { + "start": 873.3599999999999, + "end": 875.5999999999999, + "text": " I needed to be shown not told," + }, + { + "start": 875.5999999999999, + "end": 877.1199999999999, + "text": " and I think that happens quite often." + }, + { + "start": 877.1199999999999, + "end": 878.7199999999999, + "text": " And in fact, in my day-to-day life," + }, + { + "start": 879.1999999999999, + "end": 882.7199999999999, + "text": " when I have the carers, I give them the permission to tell me to do things." + }, + { + "start": 882.7199999999999, + "end": 885.04, + "text": " Because as soon as someone starts asking me to do things," + }, + { + "start": 885.04, + "end": 886.4799999999999, + "text": " I tend to get a bit muddled up," + }, + { + "start": 886.4799999999999, + "end": 887.8399999999999, + "text": " and I'm not sure what they mean." + }, + { + "start": 887.8399999999999, + "end": 889.28, + "text": " Do you ever get that when people say," + }, + { + "start": 889.28, + "end": 890.8, + "text": " oh, would you like to do do do?" + }, + { + "start": 890.8, + "end": 892.4, + "text": " Or like, would you like to have a bath?" + }, + { + "start": 892.4, + "end": 894.9599999999999, + "text": " You know, is that an instruction go and have a bath?" + }, + { + "start": 894.9599999999999, + "end": 896.0, + "text": " Because I smell." + }, + { + "start": 896.08, + "end": 897.6, + "text": " Or is that a genuine question?" + }, + { + "start": 897.6, + "end": 898.64, + "text": " Would I like to have a bath?" + }, + { + "start": 898.64, + "end": 900.0, + "text": " Or would I prefer a shower?" + }, + { + "start": 900.0, + "end": 901.84, + "text": " You know, the context isn't there for me." + }, + { + "start": 901.84, + "end": 902.64, + "text": " Do you ever get that?" + }, + { + "start": 904.24, + "end": 906.4, + "text": " I tried hard to learn about context." + }, + { + "start": 906.4, + "end": 909.76, + "text": " There's a book by Peter van Mooleon called Autism as Context Blindness." + }, + { + "start": 910.72, + "end": 914.32, + "text": " Because most non-autistic people communicate within context." + }, + { + "start": 914.32, + "end": 917.76, + "text": " So I tried to learn to be able to think my way out of it." + }, + { + "start": 917.76, + "end": 921.44, + "text": " But my mom did tell me once to go and put some bread in the toaster," + }, + { + "start": 921.44, + "end": 922.48, + "text": " which I did." + }, + { + "start": 922.48, + "end": 923.92, + "text": " And then about five minutes later," + }, + { + "start": 923.92, + "end": 925.12, + "text": " she asked, had it popped up yet?" + }, + { + "start": 925.12, + "end": 927.52, + "text": " And I said, no, because you asked me to put it in the toaster." + }, + { + "start": 928.08, + "end": 930.88, + "text": " And she said, oh, I meant put it in the toaster and pull the handle down." + }, + { + "start": 930.88, + "end": 932.16, + "text": " But now I know that." + }, + { + "start": 932.16, + "end": 934.5600000000001, + "text": " I'll remember to pull the handle down." + }, + { + "start": 934.5600000000001, + "end": 936.88, + "text": " The trouble for me is I don't remember those things." + }, + { + "start": 936.88, + "end": 938.48, + "text": " And I have, there are so many of them" + }, + { + "start": 938.48, + "end": 940.88, + "text": " that I just can't really keep a database of them in my head" + }, + { + "start": 940.88, + "end": 943.92, + "text": " of every single little weird thing I need to remember." + }, + { + "start": 943.92, + "end": 946.4, + "text": " And I tend to make the same mistakes multiple times." + }, + { + "start": 946.4, + "end": 948.8, + "text": " And people think that I will learn by getting it wrong." + }, + { + "start": 948.8, + "end": 949.92, + "text": " And I tend not to." + }, + { + "start": 949.92, + "end": 953.76, + "text": " The way that normally works for me is to modify the environment in somehow," + }, + { + "start": 953.76, + "end": 954.88, + "text": " in some way." + }, + { + "start": 954.96, + "end": 958.16, + "text": " So for example, for a while, I was going out without my shoes on." + }, + { + "start": 958.16, + "end": 960.96, + "text": " So we put a big thing on the back of my door, saying, you know," + }, + { + "start": 960.96, + "end": 962.8, + "text": " wear shoes, kind of like a checklist." + }, + { + "start": 962.8, + "end": 964.72, + "text": " And we followed it this morning, leaving the flat," + }, + { + "start": 964.72, + "end": 967.12, + "text": " that's, you know, shoes, watch, ear defenders, etc." + }, + { + "start": 967.12, + "end": 969.36, + "text": " Although we did have this idea that we should pull up my rug" + }, + { + "start": 969.36, + "end": 971.4399999999999, + "text": " and put some Lego in front of the door." + }, + { + "start": 971.4399999999999, + "end": 973.68, + "text": " So if I try and go out without shoes on, I'll know about it" + }, + { + "start": 973.68, + "end": 974.96, + "text": " because my feet were hurt." + }, + { + "start": 974.96, + "end": 978.32, + "text": " So that sort of thing, modify the environment to tell me what I need to do," + }, + { + "start": 978.32, + "end": 980.16, + "text": " rather than try and expect me to remember things." + }, + { + "start": 981.04, + "end": 983.36, + "text": " How far from home did you get without shoes?" + }, + { + "start": 984.16, + "end": 986.88, + "text": " I've got all the way to the end of the street without shoes before." + }, + { + "start": 986.88, + "end": 988.8000000000001, + "text": " I've actually got all the way to the end of the street," + }, + { + "start": 988.8000000000001, + "end": 991.6, + "text": " picked my foot up, pulled a stone out of my foot," + }, + { + "start": 991.6, + "end": 994.08, + "text": " and then noticed I wasn't wearing shoes." + }, + { + "start": 994.08, + "end": 995.36, + "text": " I sometimes can't fill my feet." + }, + { + "start": 995.36, + "end": 997.28, + "text": " They're a bit dodgy." + }, + { + "start": 997.28, + "end": 1000.72, + "text": " So it's surprisingly hard to notice if we've got shoes on or not." + }, + { + "start": 1000.72, + "end": 1004.72, + "text": " Do you ever worry that you're going to, like, forget your door keys or something?" + }, + { + "start": 1004.72, + "end": 1006.5600000000001, + "text": " I forget my door keys quite often." + }, + { + "start": 1006.5600000000001, + "end": 1009.2, + "text": " So within a five minute walk of my flat," + }, + { + "start": 1009.2, + "end": 1011.12, + "text": " there are three people with door keys." + }, + { + "start": 1011.2, + "end": 1014.96, + "text": " And I also have access to people via chat systems," + }, + { + "start": 1014.96, + "end": 1018.0, + "text": " so that I always have some backup options available." + }, + { + "start": 1018.64, + "end": 1021.12, + "text": " Oh, I think Ollie fell off the chair or something." + }, + { + "start": 1021.12, + "end": 1022.48, + "text": " I think Ollie's chair broke." + }, + { + "start": 1022.48, + "end": 1023.36, + "text": " Oh." + }, + { + "start": 1023.36, + "end": 1024.72, + "text": " Yeah, I think he broke a little bit." + }, + { + "start": 1024.72, + "end": 1026.4, + "text": " The chair broke a bit." + }, + { + "start": 1026.4, + "end": 1027.52, + "text": " Are you falling asleep?" + }, + { + "start": 1027.52, + "end": 1028.0, + "text": " No." + }, + { + "start": 1028.0, + "end": 1029.76, + "text": " Carries do this often, they fall asleep." + }, + { + "start": 1029.76, + "end": 1030.32, + "text": " So busy." + }, + { + "start": 1031.2, + "end": 1032.32, + "text": " Because if you think about it," + }, + { + "start": 1032.32, + "end": 1033.52, + "text": " How much responsibility is there?" + }, + { + "start": 1033.52, + "end": 1034.72, + "text": " Yeah, it's a hell of a responsibility." + }, + { + "start": 1034.72, + "end": 1036.32, + "text": " So he's got me here safely this morning," + }, + { + "start": 1036.32, + "end": 1038.48, + "text": " and I haven't got run over, which is, you know, good." + }, + { + "start": 1038.48, + "end": 1040.88, + "text": " But it does mean that he has to be very aware of things," + }, + { + "start": 1040.96, + "end": 1043.7600000000002, + "text": " and in a way, there's kind of this balance of," + }, + { + "start": 1044.3200000000002, + "end": 1045.92, + "text": " I know that by accessing support," + }, + { + "start": 1045.92, + "end": 1048.3200000000002, + "text": " I'm making my impairments affect other people." + }, + { + "start": 1048.8000000000002, + "end": 1050.8000000000002, + "text": " But as long as it's an equitable setup, you know," + }, + { + "start": 1050.8000000000002, + "end": 1053.7600000000002, + "text": " Ollie's paid for his time, it's a fair pay." + }, + { + "start": 1053.7600000000002, + "end": 1056.4, + "text": " And there's a genuine win-win situation," + }, + { + "start": 1057.0400000000002, + "end": 1058.72, + "text": " then I think it's okay." + }, + { + "start": 1058.72, + "end": 1060.16, + "text": " If I didn't have any support," + }, + { + "start": 1060.16, + "end": 1062.48, + "text": " I would probably just about live independently." + }, + { + "start": 1062.48, + "end": 1063.8400000000001, + "text": " But there's no way I'd be working." + }, + { + "start": 1063.8400000000001, + "end": 1065.7600000000002, + "text": " I'd just be a stressed out," + }, + { + "start": 1065.7600000000002, + "end": 1068.72, + "text": " incredibly tired, all the time, muddled up mess." + }, + { + "start": 1068.8, + "end": 1070.56, + "text": " So the little bit of support that's there" + }, + { + "start": 1070.56, + "end": 1071.84, + "text": " really does support my life." + }, + { + "start": 1072.56, + "end": 1075.68, + "text": " Coming soon to 1800 seconds on autism," + }, + { + "start": 1075.68, + "end": 1078.16, + "text": " I think I was trying to do the normal thing," + }, + { + "start": 1078.16, + "end": 1079.52, + "text": " and it wasn't working for us." + }, + { + "start": 1079.52, + "end": 1082.8, + "text": " So I was taking him to those god-awful music groups" + }, + { + "start": 1082.8, + "end": 1085.76, + "text": " that you take toddlers to, which were absolutely healthy, my son." + }, + { + "start": 1085.76, + "end": 1087.76, + "text": " He was trying to escape, I now realise." + }, + { + "start": 1089.1200000000001, + "end": 1091.92, + "text": " What is it in particular that makes you interested in Doctor Who?" + }, + { + "start": 1091.92, + "end": 1092.64, + "text": " Big question." + }, + { + "start": 1094.64, + "end": 1095.52, + "text": " It's okay, don't worry." + }, + { + "start": 1095.52, + "end": 1097.6000000000001, + "text": " Our producer, Damon, is neurotypical," + }, + { + "start": 1097.6, + "end": 1099.84, + "text": " and that was a neurotypical phrased question" + }, + { + "start": 1099.84, + "end": 1101.28, + "text": " that I was just repeating back, sorry." + }, + { + "start": 1102.3999999999999, + "end": 1106.48, + "text": " I've come to the conclusion that we're all like light switches." + }, + { + "start": 1106.48, + "end": 1108.32, + "text": " We're either on or we're off." + }, + { + "start": 1108.32, + "end": 1112.48, + "text": " We either love something totally or totally hate it." + }, + { + "start": 1114.56, + "end": 1116.24, + "text": " Yeah, that's an interesting poem." + }, + { + "start": 1116.24, + "end": 1118.48, + "text": " And I like several parts of it," + }, + { + "start": 1118.48, + "end": 1121.04, + "text": " although one part of it is sticking in my memory quite strongly." + }, + { + "start": 1122.0, + "end": 1124.0, + "text": " LAUGHTER" + }, + { + "start": 1126.96, + "end": 1128.3999999999999, + "text": " Robin fell off the chair." + }, + { + "start": 1128.3999999999999, + "end": 1130.0, + "text": " Oh, he's hot." + }, + { + "start": 1131.12, + "end": 1132.96, + "text": " Here more from Jamie and Robin" + }, + { + "start": 1132.96, + "end": 1135.92, + "text": " by subscribing to the show on BBC Sounds." + }, + { + "start": 1141.92, + "end": 1144.32, + "text": " Send any questions or thoughts to" + }, + { + "start": 1144.32, + "end": 1147.12, + "text": " Stim at BBC.co.uk." + }, + { + "start": 1147.76, + "end": 1151.28, + "text": " Well, we're settling down nicely in our studio, aren't we, Jamie?" + }, + { + "start": 1151.28, + "end": 1152.56, + "text": " Yeah, quite like it." + }, + { + "start": 1152.56, + "end": 1155.76, + "text": " It's nice and dark, lovely people, lovely time, all good." + }, + { + "start": 1155.76, + "end": 1157.76, + "text": " Hey, Robin, you asked me about my keys." + }, + { + "start": 1157.76, + "end": 1159.76, + "text": " Is there any reason why you asked about keys?" + }, + { + "start": 1159.76, + "end": 1163.76, + "text": " Well, because if you're not wearing shoes," + }, + { + "start": 1163.76, + "end": 1167.76, + "text": " then that probably means you haven't gone for your routine for going out." + }, + { + "start": 1167.76, + "end": 1170.0, + "text": " And if you haven't gone for your routine going out," + }, + { + "start": 1170.0, + "end": 1171.36, + "text": " you might not have your door keys," + }, + { + "start": 1171.36, + "end": 1173.6, + "text": " but you need to get back in to get your shoes." + }, + { + "start": 1173.6, + "end": 1175.6, + "text": " To keep your feet safe from stones." + }, + { + "start": 1175.6, + "end": 1179.6, + "text": " And, yeah, so I have a short routine when I leave my flat," + }, + { + "start": 1179.6, + "end": 1181.6, + "text": " that before I close the door," + }, + { + "start": 1181.6, + "end": 1185.6, + "text": " I check that I've got my keys by tapping them," + }, + { + "start": 1185.6, + "end": 1187.6, + "text": " like that," + }, + { + "start": 1187.6, + "end": 1190.6399999999999, + "text": " and that my phone's in my pocket by tapping my right pocket." + }, + { + "start": 1190.6399999999999, + "end": 1192.6399999999999, + "text": " And if it's hard, and that means my phone is there," + }, + { + "start": 1192.6399999999999, + "end": 1194.6399999999999, + "text": " it feels a certain way." + }, + { + "start": 1194.6399999999999, + "end": 1196.6399999999999, + "text": " And then I tap my left pocket," + }, + { + "start": 1196.6399999999999, + "end": 1198.6399999999999, + "text": " and that feels a certain way." + }, + { + "start": 1198.6399999999999, + "end": 1200.6399999999999, + "text": " And that's where my ball is." + }, + { + "start": 1200.72, + "end": 1202.64, + "text": " And that feels a certain way." + }, + { + "start": 1202.64, + "end": 1204.64, + "text": " And that's where my ball is." + }, + { + "start": 1204.64, + "end": 1208.64, + "text": " So I do that every time before I leave my flat," + }, + { + "start": 1208.64, + "end": 1210.64, + "text": " before I close the door, just a double check," + }, + { + "start": 1210.64, + "end": 1212.64, + "text": " I have my keys and my phone and my wallet," + }, + { + "start": 1212.64, + "end": 1216.64, + "text": " because I know that I need those three things to really be able to survive." + }, + { + "start": 1216.64, + "end": 1220.64, + "text": " But it always gives me a lot of anxiety about," + }, + { + "start": 1220.64, + "end": 1222.64, + "text": " you know, forgetting those kind of things." + }, + { + "start": 1222.64, + "end": 1226.64, + "text": " You're lucky to live near loads of people that you know." + }, + { + "start": 1226.64, + "end": 1228.64, + "text": " It wasn't luck. We set it up on purpose." + }, + { + "start": 1228.64, + "end": 1230.64, + "text": " The whole idea is that I live in an environment where," + }, + { + "start": 1230.64, + "end": 1232.64, + "text": " if I have a really, the way that we've built it," + }, + { + "start": 1232.64, + "end": 1234.64, + "text": " is if I have the worst possible day I can have," + }, + { + "start": 1234.64, + "end": 1238.64, + "text": " which is no speech, no ability to communicate at all," + }, + { + "start": 1238.64, + "end": 1240.64, + "text": " really struggling with a panic attack or something," + }, + { + "start": 1240.64, + "end": 1242.64, + "text": " the support is in the environment." + }, + { + "start": 1242.64, + "end": 1244.64, + "text": " Now, in my life, the way that we have it set up at the moment," + }, + { + "start": 1244.64, + "end": 1246.64, + "text": " is that I have support overnight." + }, + { + "start": 1246.64, + "end": 1250.64, + "text": " This is again one of those trade-offs of the cost-in spoons," + }, + { + "start": 1250.64, + "end": 1252.64, + "text": " basically, if I'm alone overnight," + }, + { + "start": 1252.64, + "end": 1254.64, + "text": " I'm not going to gain any spoons." + }, + { + "start": 1254.64, + "end": 1256.64, + "text": " And if I'm not gaining spoons," + }, + { + "start": 1256.64, + "end": 1258.64, + "text": " then there's nothing else I can do." + }, + { + "start": 1258.64, + "end": 1260.64, + "text": " So for now, we're putting the support in place overnight." + }, + { + "start": 1260.64, + "end": 1262.64, + "text": " Now, my hope is that by the end of the year," + }, + { + "start": 1262.64, + "end": 1264.64, + "text": " I won't need it. So I'm currently in the process of moving home." + }, + { + "start": 1264.64, + "end": 1266.64, + "text": " And as I'm moving home," + }, + { + "start": 1266.64, + "end": 1268.64, + "text": " we're trying to change the environment as much as possible" + }, + { + "start": 1268.64, + "end": 1272.64, + "text": " to make things safer, to make things more comfortable." + }, + { + "start": 1272.64, + "end": 1274.64, + "text": " So a good example of this would be we're fitting fire doors," + }, + { + "start": 1274.64, + "end": 1276.64, + "text": " so that if there is a fire," + }, + { + "start": 1276.64, + "end": 1278.64, + "text": " it is actually safe for me to stay in my room." + }, + { + "start": 1278.64, + "end": 1280.64, + "text": " We're also doing things like," + }, + { + "start": 1280.64, + "end": 1282.64, + "text": " I have Piper line set up," + }, + { + "start": 1282.64, + "end": 1284.64, + "text": " which is like an emergency response button" + }, + { + "start": 1284.64, + "end": 1286.64, + "text": " that goes through to a call centre." + }, + { + "start": 1286.64, + "end": 1288.64, + "text": " And we have them set up that if I move at them," + }, + { + "start": 1288.64, + "end": 1290.64, + "text": " it means everything's okay." + }, + { + "start": 1290.64, + "end": 1292.64, + "text": " If I press the button, then they don't hear anything," + }, + { + "start": 1292.64, + "end": 1294.64, + "text": " then they send somebody." + }, + { + "start": 1294.64, + "end": 1296.64, + "text": " I'm never a good judge of when it's an emergency." + }, + { + "start": 1296.64, + "end": 1298.64, + "text": " So if I hit the Piper line three times in one night," + }, + { + "start": 1298.64, + "end": 1300.64, + "text": " because I'm ill, they don't care," + }, + { + "start": 1300.64, + "end": 1302.64, + "text": " I don't care." + }, + { + "start": 1302.64, + "end": 1304.64, + "text": " Again, we just recover from fire quickly." + }, + { + "start": 1304.64, + "end": 1306.64, + "text": " But that's why it doesn't go to friends." + }, + { + "start": 1306.64, + "end": 1308.64, + "text": " It goes to a call centre." + }, + { + "start": 1308.64, + "end": 1310.64, + "text": " Why did you choose move as a sound?" + }, + { + "start": 1310.64, + "end": 1312.64, + "text": " Because I can say move even when I'm nonverbal most of the time." + }, + { + "start": 1312.64, + "end": 1314.64, + "text": " Move is one of the few noises I can make" + }, + { + "start": 1314.64, + "end": 1316.64, + "text": " when I'm really struggling with speech." + }, + { + "start": 1316.64, + "end": 1318.64, + "text": " It's also really clear over a telephone." + }, + { + "start": 1318.64, + "end": 1320.64, + "text": " So if I move at you," + }, + { + "start": 1320.64, + "end": 1322.64, + "text": " it generally means everything's okay." + }, + { + "start": 1322.64, + "end": 1324.64, + "text": " Do you ever get that word just kind of dribble out" + }, + { + "start": 1324.64, + "end": 1326.64, + "text": " or by themselves," + }, + { + "start": 1326.64, + "end": 1328.64, + "text": " and then you need to kind of try and stop them from all falling out?" + }, + { + "start": 1328.64, + "end": 1330.64, + "text": " It's like words all over the floor" + }, + { + "start": 1330.64, + "end": 1332.64, + "text": " and then you feel like you're going to have to clear up a mess." + }, + { + "start": 1332.64, + "end": 1334.64, + "text": " I occur earlier sometimes when I'm particularly," + }, + { + "start": 1334.64, + "end": 1336.64, + "text": " when I'm stressed," + }, + { + "start": 1336.64, + "end": 1338.64, + "text": " which means that I repeat things like" + }, + { + "start": 1338.64, + "end": 1340.64, + "text": " mind with the gap." + }, + { + "start": 1340.64, + "end": 1342.64, + "text": " Yeah, a collier is repeating things." + }, + { + "start": 1342.64, + "end": 1344.64, + "text": " I used to do it, I'll bless my friends." + }, + { + "start": 1344.64, + "end": 1346.64, + "text": " So now I said that one of my friends is called Tabby." + }, + { + "start": 1346.64, + "end": 1348.64, + "text": " And when I was really struggling with my speech," + }, + { + "start": 1348.64, + "end": 1350.64, + "text": " the first speech that I got back was bad Tabby," + }, + { + "start": 1350.64, + "end": 1352.64, + "text": " which was something that someone had said to him" + }, + { + "start": 1352.64, + "end": 1354.64, + "text": " when he spilled a drink," + }, + { + "start": 1354.64, + "end": 1356.64, + "text": " but I echoed it back to them over and over and over again." + }, + { + "start": 1356.64, + "end": 1360.64, + "text": " I got the same thing with Thomas the Tank Engine line sometimes," + }, + { + "start": 1360.64, + "end": 1362.64, + "text": " and then I was like," + }, + { + "start": 1362.64, + "end": 1364.64, + "text": " I'm going to have to go back to the first speech" + }, + { + "start": 1364.64, + "end": 1366.64, + "text": " and think about it." + }, + { + "start": 1366.64, + "end": 1368.64, + "text": " And I think that Thomas the Tank Engine line sometimes" + }, + { + "start": 1368.64, + "end": 1370.64, + "text": " is that very occasionally," + }, + { + "start": 1370.64, + "end": 1372.64, + "text": " if I'm really stressed," + }, + { + "start": 1372.64, + "end": 1374.64, + "text": " I'll spit out some random Thomas the Tank Engine dialogue" + }, + { + "start": 1374.64, + "end": 1376.64, + "text": " from 20 years ago." + }, + { + "start": 1376.64, + "end": 1378.64, + "text": " So some people say that echo earlier," + }, + { + "start": 1378.64, + "end": 1380.64, + "text": " it's just something that happens when you're a child," + }, + { + "start": 1380.64, + "end": 1382.64, + "text": " but we both experience it as adults." + }, + { + "start": 1382.64, + "end": 1384.64, + "text": " Yeah, it's just part of being autistic." + }, + { + "start": 1384.64, + "end": 1386.64, + "text": " It's the same as like stimming when I flap" + }, + { + "start": 1386.64, + "end": 1388.64, + "text": " and other bits and bobs." + }, + { + "start": 1388.64, + "end": 1390.64, + "text": " Do you have, I get this feeling sometimes" + }, + { + "start": 1390.64, + "end": 1392.64, + "text": " when if I can't pick words," + }, + { + "start": 1392.64, + "end": 1394.64, + "text": " I can kind of defaults to the nearest communication." + }, + { + "start": 1394.64, + "end": 1396.64, + "text": " So for example, most of the carers in my life" + }, + { + "start": 1396.64, + "end": 1398.64, + "text": " have never heard me speak," + }, + { + "start": 1398.64, + "end": 1400.64, + "text": " which is why it's a bit odd when I give them this podcast link," + }, + { + "start": 1400.64, + "end": 1402.64, + "text": " because they haven't normally heard my voice." + }, + { + "start": 1402.64, + "end": 1404.64, + "text": " But if they get, when they arrive at the door," + }, + { + "start": 1404.64, + "end": 1406.64, + "text": " the best I can normally squeeze out is an," + }, + { + "start": 1406.64, + "end": 1408.64, + "text": " hello, or a ulaah," + }, + { + "start": 1408.64, + "end": 1410.64, + "text": " it's just the word that will come out." + }, + { + "start": 1410.64, + "end": 1412.64, + "text": " But very occasionally," + }, + { + "start": 1412.64, + "end": 1414.64, + "text": " if something's going very well," + }, + { + "start": 1414.64, + "end": 1416.64, + "text": " they'll get a little bit of a collier out of me." + }, + { + "start": 1416.64, + "end": 1418.64, + "text": " And I think part of it is" + }, + { + "start": 1418.64, + "end": 1420.64, + "text": " because they're very important people in my life" + }, + { + "start": 1420.64, + "end": 1422.64, + "text": " that I'm very dependent on." + }, + { + "start": 1422.64, + "end": 1424.64, + "text": " And I know that communicating the wrong things" + }, + { + "start": 1424.64, + "end": 1426.64, + "text": " can be easily misunderstood." + }, + { + "start": 1426.64, + "end": 1428.64, + "text": " There's a bit of an anxiety there." + }, + { + "start": 1428.64, + "end": 1430.64, + "text": " My speech has been on and off for ages." + }, + { + "start": 1430.64, + "end": 1432.64, + "text": " So it's not anything new." + }, + { + "start": 1432.64, + "end": 1434.64, + "text": " And for the most part, we just ignore it." + }, + { + "start": 1434.64, + "end": 1436.64, + "text": " We just let it happen." + }, + { + "start": 1436.64, + "end": 1438.64, + "text": " Because eventually it's like building up momentum." + }, + { + "start": 1438.64, + "end": 1440.64, + "text": " It'll start off as a bit of a collier." + }, + { + "start": 1440.64, + "end": 1442.64, + "text": " Or many years ago, I think we did an event together." + }, + { + "start": 1442.64, + "end": 1444.64, + "text": " We're a temple grandin'" + }, + { + "start": 1444.64, + "end": 1446.64, + "text": " and I started my presentation by reading a poem." + }, + { + "start": 1446.64, + "end": 1448.64, + "text": " Because the poem got my speech going" + }, + { + "start": 1448.64, + "end": 1450.64, + "text": " and a bit of momentum up." + }, + { + "start": 1450.64, + "end": 1452.64, + "text": " And then I could start picking my own words." + }, + { + "start": 1452.64, + "end": 1454.64, + "text": " So speech is something I find quite difficult," + }, + { + "start": 1454.64, + "end": 1456.64, + "text": " which is kind of ironic considering" + }, + { + "start": 1456.64, + "end": 1458.64, + "text": " I make podcasts and do public speaking" + }, + { + "start": 1458.64, + "end": 1460.64, + "text": " as part of my job." + }, + { + "start": 1460.64, + "end": 1462.64, + "text": " How do you find speech, Robin?" + }, + { + "start": 1462.64, + "end": 1466.64, + "text": " I'd say 99% of the time I have speech." + }, + { + "start": 1466.64, + "end": 1470.64, + "text": " Only if I'm very ill," + }, + { + "start": 1470.64, + "end": 1472.64, + "text": " I tend to go there quiet." + }, + { + "start": 1472.64, + "end": 1476.64, + "text": " And so when I got diagnosed" + }, + { + "start": 1476.64, + "end": 1478.64, + "text": " with a well-balanced syndrome," + }, + { + "start": 1478.64, + "end": 1480.64, + "text": " I went to the doctors complaining of a double-known pain." + }, + { + "start": 1480.64, + "end": 1484.64, + "text": " And they said that I should go to A&E if it continues." + }, + { + "start": 1484.64, + "end": 1486.64, + "text": " And I thought, well, that's not going to be" + }, + { + "start": 1486.64, + "end": 1488.64, + "text": " for an autistic person, A&E." + }, + { + "start": 1488.64, + "end": 1490.64, + "text": " And autism on their own." + }, + { + "start": 1490.64, + "end": 1492.64, + "text": " And that sounds like a bad combination." + }, + { + "start": 1492.64, + "end": 1494.64, + "text": " So I went to my parents" + }, + { + "start": 1494.64, + "end": 1496.64, + "text": " because my parents kind of act like a triage." + }, + { + "start": 1496.64, + "end": 1498.64, + "text": " Yep." + }, + { + "start": 1498.64, + "end": 1500.64, + "text": " Because my friends do the same." + }, + { + "start": 1500.64, + "end": 1502.64, + "text": " Yeah, so I went and" + }, + { + "start": 1502.64, + "end": 1504.64, + "text": " yeah, my parents knew as soon as they saw me." + }, + { + "start": 1504.64, + "end": 1506.64, + "text": " Definitely something wrong with you." + }, + { + "start": 1506.64, + "end": 1508.64, + "text": " Because you've gone grey." + }, + { + "start": 1508.64, + "end": 1510.64, + "text": " And you're not speaking very much." + }, + { + "start": 1510.64, + "end": 1512.64, + "text": " Definitely something wrong." + }, + { + "start": 1512.64, + "end": 1514.64, + "text": " Not sure if you've got appendicitis," + }, + { + "start": 1514.64, + "end": 1516.64, + "text": " but totally see that there's something wrong." + }, + { + "start": 1516.64, + "end": 1518.64, + "text": " And so they got me a GP appointment" + }, + { + "start": 1518.64, + "end": 1520.64, + "text": " and they took me because I needed someone to advocate." + }, + { + "start": 1520.64, + "end": 1522.64, + "text": " I couldn't understand the questions." + }, + { + "start": 1522.64, + "end": 1524.64, + "text": " I needed the questions rephrased." + }, + { + "start": 1524.64, + "end": 1526.64, + "text": " Exactly the same as basically any time I go to the doctor," + }, + { + "start": 1526.64, + "end": 1528.64, + "text": " I go with a friend or with a support person." + }, + { + "start": 1528.64, + "end": 1532.64, + "text": " Because that's the time when I need to be able to communicate most." + }, + { + "start": 1532.64, + "end": 1534.64, + "text": " That's the time when I need to be able to communicate most accurately." + }, + { + "start": 1534.64, + "end": 1538.64, + "text": " But by definition, I'm at least able to communicate." + }, + { + "start": 1538.64, + "end": 1540.64, + "text": " It's actually kind of interesting because you have to have a lot of trust" + }, + { + "start": 1540.64, + "end": 1542.64, + "text": " in the other person's ability to read you." + }, + { + "start": 1542.64, + "end": 1546.64, + "text": " And that can take years and years and years to develop." + }, + { + "start": 1546.64, + "end": 1548.64, + "text": " And you know, it takes a long time." + }, + { + "start": 1548.64, + "end": 1550.64, + "text": " Yeah, so then the doctor said that I had" + }, + { + "start": 1550.64, + "end": 1552.64, + "text": " a little ball syndrome" + }, + { + "start": 1552.64, + "end": 1554.64, + "text": " and she gave me some medication for it." + }, + { + "start": 1554.64, + "end": 1556.64, + "text": " And then that made a lot of difference." + }, + { + "start": 1556.64, + "end": 1558.64, + "text": " Like, as soon as I took it, I went to sleep." + }, + { + "start": 1558.64, + "end": 1560.64, + "text": " And then when I woke up," + }, + { + "start": 1560.64, + "end": 1562.64, + "text": " I was much better." + }, + { + "start": 1562.64, + "end": 1564.64, + "text": " But I wasn't cute." + }, + { + "start": 1564.64, + "end": 1566.64, + "text": " But over a two week period, I got much better." + }, + { + "start": 1566.64, + "end": 1568.64, + "text": " Yeah, we get a similar sort of thing." + }, + { + "start": 1568.64, + "end": 1570.64, + "text": " So I've had ear infections persistently for months." + }, + { + "start": 1570.64, + "end": 1572.64, + "text": " Because I don't feel the pain from them." + }, + { + "start": 1572.64, + "end": 1574.64, + "text": " So until there's dribbling stuff coming out of my ears," + }, + { + "start": 1574.64, + "end": 1576.64, + "text": " I don't really notice." + }, + { + "start": 1576.64, + "end": 1578.64, + "text": " But now they're gone." + }, + { + "start": 1578.64, + "end": 1580.64, + "text": " I can tell that my head feels better." + }, + { + "start": 1580.64, + "end": 1582.64, + "text": " And that I can think better." + }, + { + "start": 1582.64, + "end": 1584.64, + "text": " And that I have more energy." + }, + { + "start": 1584.64, + "end": 1586.64, + "text": " But if you'd asked me before, oh, does your ears hurt?" + }, + { + "start": 1586.64, + "end": 1588.64, + "text": " I wouldn't be able to say yes or no." + }, + { + "start": 1588.64, + "end": 1590.64, + "text": " And again, sometimes it's the people around me going," + }, + { + "start": 1590.64, + "end": 1592.64, + "text": " Jamie's quieter than normal." + }, + { + "start": 1592.64, + "end": 1594.64, + "text": " Or Jamie's sleeping a lot more than normal." + }, + { + "start": 1594.64, + "end": 1598.64, + "text": " And they have to then kind of almost do a debug routine of kind of," + }, + { + "start": 1598.64, + "end": 1600.64, + "text": " like, can you feel your feet today?" + }, + { + "start": 1600.64, + "end": 1602.64, + "text": " How about your ears? How about your teeth?" + }, + { + "start": 1602.64, + "end": 1606.64, + "text": " And we then kind of finally work out what's wrong." + }, + { + "start": 1606.64, + "end": 1608.64, + "text": " And weirdly, I have a feeling that when I was a kid," + }, + { + "start": 1608.64, + "end": 1610.64, + "text": " I was actually better at this." + }, + { + "start": 1610.64, + "end": 1612.64, + "text": " But as I've got older, it's got harder and harder to read my body." + }, + { + "start": 1612.64, + "end": 1614.64, + "text": " I don't know if other autistic people experience that." + }, + { + "start": 1614.64, + "end": 1616.64, + "text": " Well, your body's bigger than when you're a child." + }, + { + "start": 1616.64, + "end": 1618.64, + "text": " True." + }, + { + "start": 1618.64, + "end": 1620.64, + "text": " And you probably, I don't, I'm not a man." + }, + { + "start": 1620.64, + "end": 1622.64, + "text": " So I don't know if it makes a difference." + }, + { + "start": 1622.64, + "end": 1626.64, + "text": " But you probably have hair on your chest and your back and your arms and your legs." + }, + { + "start": 1626.64, + "end": 1628.64, + "text": " And you wouldn't have had that when you were a child." + }, + { + "start": 1628.64, + "end": 1630.64, + "text": " So that might mean that you get different." + }, + { + "start": 1630.64, + "end": 1632.64, + "text": " I know everybody's got hair, but I mean." + }, + { + "start": 1632.64, + "end": 1634.64, + "text": " Yeah, I know what you mean." + }, + { + "start": 1634.64, + "end": 1636.64, + "text": " Yeah, so maybe that." + }, + { + "start": 1636.64, + "end": 1640.64, + "text": " And also you have to have more sensory experiences because you have to have a shave." + }, + { + "start": 1640.64, + "end": 1644.64, + "text": " Yeah, that, you know, shaving was the thing that took a long time to master." + }, + { + "start": 1644.64, + "end": 1646.64, + "text": " I can't do it in front of a mirror." + }, + { + "start": 1646.64, + "end": 1648.64, + "text": " If you put me in front of a mirror to shave, I can't coordinate it." + }, + { + "start": 1648.64, + "end": 1650.64, + "text": " Two mini signals." + }, + { + "start": 1650.64, + "end": 1654.64, + "text": " So I learnt to shave by borrowing a dull razor, which sounds silly." + }, + { + "start": 1654.64, + "end": 1658.64, + "text": " But I borrowed a dull razor and just learnt how to fill my face and run a razor over it." + }, + { + "start": 1658.64, + "end": 1660.64, + "text": " It opposite to the way that it cuts." + }, + { + "start": 1660.64, + "end": 1662.64, + "text": " And then kind of built up from there." + }, + { + "start": 1662.64, + "end": 1666.64, + "text": " Do you mean that when you're in front of a mirror that there's too much information" + }, + { + "start": 1666.64, + "end": 1670.64, + "text": " from like what you're seeing is the opposite?" + }, + { + "start": 1670.64, + "end": 1672.64, + "text": " Yeah, exactly that." + }, + { + "start": 1672.64, + "end": 1674.64, + "text": " Flipping it back the other way around." + }, + { + "start": 1674.64, + "end": 1676.64, + "text": " I find incredibly difficult." + }, + { + "start": 1676.64, + "end": 1678.64, + "text": " It's one of the reasons why I don't drive." + }, + { + "start": 1678.64, + "end": 1682.64, + "text": " Because when I look in rearview mirrors, my brain puts them on the other side of the road from where I am." + }, + { + "start": 1682.64, + "end": 1684.64, + "text": " Like, I can't vision them in space." + }, + { + "start": 1684.64, + "end": 1686.64, + "text": " There's another reason why I walk around rooms." + }, + { + "start": 1686.64, + "end": 1690.64, + "text": " Because when you walk around rooms, you actually find where the real corners are." + }, + { + "start": 1690.64, + "end": 1692.64, + "text": " Because in this room you've got gray in all the corners." + }, + { + "start": 1692.64, + "end": 1696.64, + "text": " And it can, in one moment, feel like it's expansive and 100 miles wide." + }, + { + "start": 1696.64, + "end": 1700.64, + "text": " And then the next moment feel like it's a tiny little box." + }, + { + "start": 1700.64, + "end": 1704.64, + "text": " So having that reference of how big the room is is something that's really helpful for me." + }, + { + "start": 1704.64, + "end": 1706.64, + "text": " We have to say what stimming is because we've mentioned it a couple of times." + }, + { + "start": 1706.64, + "end": 1710.64, + "text": " And our email address, our lovely email address is stim." + }, + { + "start": 1710.64, + "end": 1714.64, + "text": " That's STIM at bbc.co.uk." + }, + { + "start": 1714.64, + "end": 1721.64, + "text": " And stim is the singular of the plural which is stimming STIM, M-M-I-N-G." + }, + { + "start": 1721.64, + "end": 1724.64, + "text": " And that's the autism community word." + }, + { + "start": 1724.64, + "end": 1726.64, + "text": " It not everybody likes it." + }, + { + "start": 1726.64, + "end": 1734.64, + "text": " It's generally the word that's used within the autism community to describe what professionals might describe as repetitive routine behaviours." + }, + { + "start": 1734.64, + "end": 1737.64, + "text": " Lovely. God love how the professionals pathologize stuff." + }, + { + "start": 1737.64, + "end": 1738.64, + "text": " Yeah." + }, + { + "start": 1738.64, + "end": 1741.64, + "text": " No, like when somebody wins the lottery, they jump up and down and flap." + }, + { + "start": 1741.64, + "end": 1742.64, + "text": " Yeah, yeah, yeah." + }, + { + "start": 1742.64, + "end": 1743.64, + "text": " So what we do just for often?" + }, + { + "start": 1743.64, + "end": 1746.64, + "text": " Yeah, flapping and rocking and spinning in circles." + }, + { + "start": 1746.64, + "end": 1751.64, + "text": " Did you know that I did a survey of 100 autistic people and I asked them about their stimming." + }, + { + "start": 1751.64, + "end": 1756.64, + "text": " I think that 72% of people had been asked not to stim." + }, + { + "start": 1756.64, + "end": 1758.64, + "text": " 50% of people said they like stimming." + }, + { + "start": 1758.64, + "end": 1761.64, + "text": " 30% of people said they like stimming sometimes." + }, + { + "start": 1761.64, + "end": 1768.64, + "text": " And the top three reasons for people stimming were to reduce anxiety, calm down over stimulated senses." + }, + { + "start": 1768.64, + "end": 1772.64, + "text": " And I don't know what the other one was, but anyway." + }, + { + "start": 1772.64, + "end": 1774.64, + "text": " And there's a couple of reasons there." + }, + { + "start": 1774.64, + "end": 1777.64, + "text": " Reducing anxiety and calming down senses." + }, + { + "start": 1777.64, + "end": 1778.64, + "text": " Whatever." + }, + { + "start": 1778.64, + "end": 1783.64, + "text": " And this sensation that's for me stimming happens in my body and comes out." + }, + { + "start": 1783.64, + "end": 1789.64, + "text": " And the more I let the stims flow, the more I feel myself and actually the better I feel about things." + }, + { + "start": 1789.64, + "end": 1794.64, + "text": " When I was a kid, being stopped from rocking or stopped from flapping my hands." + }, + { + "start": 1794.64, + "end": 1795.64, + "text": " My hands." + }, + { + "start": 1795.64, + "end": 1796.64, + "text": " Yeah, quiet hands." + }, + { + "start": 1796.64, + "end": 1802.64, + "text": " So this is a phrase that I don't know if we still have it in special schools, but Gully, it was a pain in the butt for me." + }, + { + "start": 1802.64, + "end": 1805.64, + "text": " I had it a bit at primary school and quite a lot at my first secondary school." + }, + { + "start": 1805.64, + "end": 1810.64, + "text": " If I was flapping my hands or clicking a pen lid or something, I'd be told, oh, quiet hands, Jamie." + }, + { + "start": 1810.64, + "end": 1814.64, + "text": " Which I of course took to me in hands, face down like I'm a prisoner on a table." + }, + { + "start": 1814.64, + "end": 1820.64, + "text": " And it used to be the ban on my existence because the moment I stopped paying attention to that and got distracted by something else, they'd be back up flapping again." + }, + { + "start": 1820.64, + "end": 1826.64, + "text": " But actually the flapping and the movements and stuff, they all helped me to think and work and be part of my own body." + }, + { + "start": 1826.64, + "end": 1832.64, + "text": " And I think sometimes in the urge to make being around autistic people more comfortable to non-autistic people," + }, + { + "start": 1832.64, + "end": 1837.64, + "text": " we actually deny autistic people bodily autonomy, you know, control over our own bodies." + }, + { + "start": 1837.64, + "end": 1842.64, + "text": " And that I think is one of the kind of most corrosive, well-meaning things that people do." + }, + { + "start": 1842.64, + "end": 1845.64, + "text": " I know they mean well, but it can be really difficult." + }, + { + "start": 1845.64, + "end": 1847.64, + "text": " Yeah, let the flap free." + }, + { + "start": 1847.64, + "end": 1848.64, + "text": " Yeah, free the flaps." + }, + { + "start": 1848.64, + "end": 1856.64, + "text": " And as we said before, if you've got a flap that you want to send us, eGN email or something, then please, yeah, do send it to Stim at bbc.co.uk." + }, + { + "start": 1856.64, + "end": 1858.64, + "text": " Yeah, you can send a photo." + }, + { + "start": 1858.64, + "end": 1859.64, + "text": " Yeah, or a video." + }, + { + "start": 1859.64, + "end": 1860.64, + "text": " We'd love to see that." + }, + { + "start": 1860.64, + "end": 1861.64, + "text": " Yeah, we would." + }, + { + "start": 1861.64, + "end": 1865.64, + "text": " Although we're making a podcast, so we won't be able to show it on air. We'd be able to go, oh, that's a nice Stim." + }, + { + "start": 1865.64, + "end": 1869.64, + "text": " Well, to try and avoid information overload, I think we'll finish there." + }, + { + "start": 1869.64, + "end": 1871.64, + "text": " We've talked about lots of things today." + }, + { + "start": 1871.64, + "end": 1873.64, + "text": " Yeah, well, we're going to wrap it up with..." + }, + { + "start": 1873.64, + "end": 1875.64, + "text": " Well, I've got this little bit of script, so I'll read that." + }, + { + "start": 1875.64, + "end": 1878.64, + "text": " That's it for this edition. I hope you've enjoyed it." + }, + { + "start": 1878.64, + "end": 1881.64, + "text": " If you did enjoy it, tell everyone about it." + }, + { + "start": 1881.64, + "end": 1884.64, + "text": " If you didn't enjoy it, also tell everybody about it." + }, + { + "start": 1884.64, + "end": 1890.64, + "text": " In future weeks, we're looking to talk about our home lives, autistic humour, socialising, parenting, all sorts of stuff." + }, + { + "start": 1890.64, + "end": 1896.64, + "text": " And of course, if you have any questions or suggestions, then drop us an email at Stim at bbc.co.uk." + }, + { + "start": 1896.64, + "end": 1898.64, + "text": " We'll see you next week." + }, + { + "start": 1898.64, + "end": 1903.64, + "text": " Please make sure you subscribe so you get to hear the podcast as soon as it comes out." + }, + { + "start": 1903.64, + "end": 1908.64, + "text": " Anyway, thanks very much for joining us, and we look forward to you hearing us again soon." + }, + { + "start": 1908.64, + "end": 1909.64, + "text": " Bye!" + }, + { + "start": 1909.64, + "end": 1910.64, + "text": " Bye!" + }, + { + "start": 1910.64, + "end": 1912.64, + "text": " Time's off." + }, + { + "start": 1913.64, + "end": 1917.64, + "text": " That was 1800 seconds on Autism." + }, + { + "start": 1920.64, + "end": 1932.64, + "text": " I don't know about you, Eli, but it was one of those podcasts where I felt I properly understood someone else's world for it." + }, + { + "start": 1932.64, + "end": 1934.64, + "text": " It felt like a gift to me." + }, + { + "start": 1934.64, + "end": 1936.64, + "text": " Yeah, yeah." + }, + { + "start": 1936.64, + "end": 1939.64, + "text": " They put me in a place that I would have never gotten to on my own." + }, + { + "start": 1939.64, + "end": 1941.64, + "text": " I'm glad we did that, you liked it." + }, + { + "start": 1941.64, + "end": 1942.64, + "text": " Yes, we did." + }, + { + "start": 1942.64, + "end": 1947.64, + "text": " So if you liked that and you want to hear more, just search for 1800 seconds." + }, + { + "start": 1947.64, + "end": 1956.64, + "text": " That's 1-8-0-0 space, seconds, space, on space, autism, in the bbc sounds app." + }, + { + "start": 1956.64, + "end": 1958.64, + "text": " Or indeed on the bbc sounds website." + }, + { + "start": 1958.64, + "end": 1960.64, + "text": " And we'll see you next time." + }, + { + "start": 1972.64, + "end": 1973.64, + "text": " Bye!" + }, + { + "start": 2002.64, + "end": 2003.64, + "text": " Bye!" + } +] \ No newline at end of file