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[
{
"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!"
}
]