The unwritten rules of dinner time

BBC Sounds. Music, radio, podcasts. 1800 Seconds on Autism. With Robin Stewart and Jamie Knight. Just stick to your safe foods, stick to the foods you like, even if they're not festivee. It's a nice time of year spending your family, but don't feel pressured to have to try new things. If you're going to call it Christmas lunch and it happens at 4pm, give them a heads up. That isn't lunch! That lunch is not happening at lunch time, because that's one really stressful. We've got an email from my postman, isn't that exciting? It is, it is. You know, when I was a kid, being a postman was pretty much what I wanted to be because a postman Pat and anyway. Already the email, Jamie! We don't eat metal! I'm sorry! Is that happy stimming? Yes! Thank you for joining us on the podcast. I'm Robin Stewart and I'm recording from my flat in London with support back in me. And I'm Jamie Knight. In my bedroom with my four-foot-plush-line-piled-line. We're putting out episodes each month at the moment, and all going well, they'll be five more after this one. This episode goes out on Christmas Eve, that most sensory of holiday seasons. Well, I think it depends on your sensory experience, because for some people, Thanksgiving would be more sensory, or maybe even Halloween, because that's even more unexpected. We'll also read some of your emails and talk to listener Emily. Emma, the producer. Hello! Has written us a rough script as always, but we'll be talking to them about their intense interest. So who knows how the conversation will panel. And let's get started. Well, the script doesn't feel very rough to me. It's on my computer, my pad's very smooth. I know you love my neurotypical strip scripts, so I like to give you something to pick apart. Your typical strips. I like that. And then they accuse only autistic people of scripting. Oh! What's scripting again? Scripting is where you kind of go into a conversation with a plan for the conversation. So, for example, if I'm in town, and I walk into somebody, I'm sorry, I'm sorry, sorry, did I hurt you? I'm sorry, goodbye. So you have a thing that you see every time you walk into somebody? Yes. It's like a film script. It's like, if I'm going to the supermarket now, I've added in "Stay safe!" "When I leave, when I say goodbye, thank you, stay safe!" Because that seems to be what everyone says now. But before, it was just, bye! Thank you! I guess I do it, but I don't think about it as scripting. And obviously, I can change it up mid-sentence, whereas you stick to the same thing all the time. Is that it? Not all the time. It's a little bit more flexible than that. But I always answer phone calls from different people the same way. My dad's like, yeah, you're going to answer the phone with, hey, how are you? Because I always answer with, hey, how are you? Exactly the same intonation. Even if it's like, hey, how are you? By the way, my house is on fire. It's like, yeah, just scripting. As soon as we were suddenly talking about this, we did have an email from a mum about her daughter who spends all of dinner time scripting. And she's got a script that she says all the way through dinner. And it doesn't let anybody, anybody else speak to her. And it's difficult to have a conversation around her. And the mum was kind of just asking, is that okay? And why do you think she's doing that? Maybe it's because dinner time is stressful. Anxiety. Really? So is anxiety a big reason for scripting? Think of it as, I think Robin would agree. Me or Robin are brilliant at thinking on our feet when it comes to communication. So it's not quite good at it. It's almost horrible to me. I'm definitely not good at it then. If we do some of the thinking ahead of time, then it means that there's less to do in the moment. Save brain power. Yeah. The other side of it as well is sometimes it reduces the amount of variability and increases the amount of control. So for example, if she's talking all the way through dinner and people can't get a word in edgeways, that's probably a useful thing, because it means that she doesn't have to then have to respond to the unpredictability of the situation. Useful for her, but not a family. I would suggest finding out the summer anxiety that she has around dinner or a sensory issue. I would try and unpick it to find out what the causation is, because my first instinct is anxiety, because maybe, you know, like my parents, they're both from spectrum, and they have quite a set routine for, you know, what they have for dinner on certain days. So on Sunday, they have a roast. Tuesday, they have cold roast. Friday, they have steak. And they always listen to the 6 o'clock comedy, which I hate. I mean, it's not that I've got anything against a 6 o'clock comedy. I just, I don't really want to listen to it when I'm eating my tea, because one, I don't find all of it funny. And two, some of it has those strong visual images, and I don't really want to think about, in car, nation, Nathan, particularly, doing dinner. But it's how they get through their dinner. That's how they get through their dinner, and it means that they don't have to have a conversation, and they're not sitting in silence. But so I would want to really pick apart the dinner routine, and where she sits, and all the sensory experiences, and really try and understand from her point of view, because there are some things that, you know, really stress me out. But what I've also learned is that sometimes I just need my noise canceling headphones on, and that solves lots of problems. But what I would say is that I'm sure that there's a way of her meeting her needs without stopping everybody else having a conversation at dinner. If that's what they would do. Yeah, why would dinner be particularly stressful? There's a lot of unwritten rules. Yeah, there's a lot of unwritten rules. So the order in which you eat food is something that people have very strong opinions about. So if you've got a lunch box, you need the chocolate bar before the sandwich, for example. But then there's also just physical stuff like using cutlery without making big screeching noises on the plate. I basically have no crockery in my flat, because the clinking, the clanking, it takes a lot of spoons. You have to be very careful about like textures of things, like my parents. They've had the same bread for 10 years, and now I wouldn't change it. So in my head, that's really moldy bread. They've had the same brand of bread for 10 years, not the same loaf. And it would really stress me out if they changed bread to something I hadn't had before. Sometimes they have a baguette. That's okay, because I like baguettes. But when they first got this bread, I didn't like it, because it's all, it's got bits in it. But I've learnt to tolerate it, because they've had it for so long, that I've just learnt. But sometimes, I can't cope with having toast in the morning. There's too crunchy, too loud, too busy. So I have wheat-a-bicks, because that's quieter. But I have to be very careful about temperatures of things. So I often don't have soup with my mum and dad. And it's not because I don't like soup. It's because they have it too hot, it takes so long for it to cool down. And I hate sitting at the table for an in-link for time. And also, if somebody was telling me what order to eat my food in, that would stress me out. I don't mind if bits of food touch, that's fine. For some people, that's definitely not fine. But I like to, like, deal with the pork and then deal with the carrots and then deal with the leak. And it's not that I don't like anything, it's just that... I just don't want to have to process too much stuff all at once. This is one of the reasons why I eat the same meal every day, which is, like, filled pasta. Is it's very homogenous. Every bite tastes like every other bite. It's very easy, it's very predictable. I can buy 10 packs of it and know that I've got 20 meals worth. I'm sat here now thinking that I'm really glad I live independently and I don't have to share meal times with anybody. Because I have support of meal times. I go collect it from the lounge and then go sit in my bedroom and eat it at my desk whilst watching YouTube, which is perfect for me. I mean, I guess it feels like a bit of a minefield, but it's not really. It's just respect people's preferences. It needs. Yeah, that's basically the height of it, isn't it? Yeah, and try and figure out what those needs are. You know, if the person is smaller, if the person has a communication process that you don't understand yet or whatever, it's about figuring it out. Sometimes we tend to over-complicate communication. So, for example, if someone doesn't like something, they can't go, this is yucky. They have to go, oh, I'm very sorry, but I don't really like this. The texture of it is appalling or whatever. Oh, God, that came out very British. Very there. Very there. Very pro. But that's an example of scripting. When you have AAC or a card or something, you're given permission to be a lot simpler. For absolutely ages, I had a card that just had yucky written on it. I tend to find that people get way less emotion on about AAC. If somebody makes you a bowl of something and you go, oh, yuck. They tend to get really upset. But if you just hold up a card saying yucky and sorry, they'll tend to go, oh, well, that's interesting. Let's see if we can sort that out for you. Don't take it personally because it's not about the food being horrible. It's just that it's incompatible with the way that you process food. So, like, something might be a very sensitive texture and some textures that just make me gag. And that's a very uncontrollable thing. I don't have any control over it. And it's got nothing to do with how good the food is, because it could be the nicest piece of food ever. And everybody else on the planet could like it. But for my body, my body just does not compete with it. Do you mind, if I ask? Do you ever worry about nutrition and do you do anything about it, if you are? Because of eating the same meal every day. Go for it. When you say, can I ask, were you doing the asking? Or were you asking if you could? It was me being, you're typically asking, can I ask? And then going ahead and asking and anyway. I think Edma was trying to say, I don't want to offend you and you don't have to answer this question, but I have this question. That's exactly what I was trying to say. Yes and no. So, I tried to take vitamins once a day. The idea being, if I need to take some medication, I can take it at the same time as the vitamins. So there's already a slot in my routine for it. I'm the fittest I've been in years. And I've been eating the same pasta for dinner pretty much every day for six years. We stopped a bit over lockdown and I couldn't get hold of it. You know, I have some variety. Sometimes it's chicken and bacon pasta, not ham and cheese. But, you know, generally speaking, it's the same thing. It's only about 400 calories. And then I tend to have more flexibility in lunch and I tend to have toast. I'm also very, very sensitive to sugar. So it's something that we've actually learnt from all of the cycling, which is when my sugar gets low, my vision gets really narrow and I lose all of the colors. So trying to keep enough sugar in my system whilst also, you know, being awake and having enough sleep, just kind of keeping on top of my body to keep my body healthy is pretty tricky. Yeah. But you have a bit of flexibility around what you eat for breakfast and lunch, so it means that having the same dinner is not a huge thing. Yeah. And then the nice thing about that consistent dinner is every now and then we'll go, do you know what pasta for dinner? And I'll be like, yes. What are you eating today? Nothing. Okay, well, that'll be a double portion of the pasta tonight then. So it's actually really useful to have it as a safety net at the end of every day. If I've eaten nothing, I will at least make sure they eat some pasta and whoever's doing the support will generally, you know, frown at me and then go, okay, well, let's add something to it. Or eat some food. 1800 seconds on autism. With Robin Stewart and Jamie Knight. Please keep writing to us at [email protected]. We love getting your emails, like this one from Ash, who says, "I love your podcast. I always happy stim when I listen. I wanted to tell you about my special interest. It's the original Alice in Wonderland film. I've watched it so much, I know it word for word, and it never fails to make me happy. Me and my support bear both wanted to say thank you for being so honest and open about autistic life." Oh, thanks Ash. Thanks Ash's bear. And we says, "Nice to meet you, Ash's bear." Lucas emailed by his mum Liz to say, "I am an 8-year-old autistic boy and my mummy is listening to your podcast. Loving to hear about your support animals, most people think, "Narnas and Deborah, I hope I've pronounced that right, adjust toys." But they aren't, yes, I definitely agree. Emphasis on the last sentence says Emma. Yes, I agree, yes. Sometimes people call Henry a toy, but he's not a toy. Lying isn't an animal object, but he's not necessarily a toy, because he's not a plaything. Yeah, I don't play with Henry. They sent us some lovely emoji, which leads me to believe that Narnas is a monkey and Deborah is a zebra. Deborah is a zebra, that is. And Narnas, like bananas? Bananas. Oh, that's really clever. We love that. We love that. Yeah, we love it. We love that. That is genius. Thank you for listening and please give a hug to Narnas and Deborah for us. Yes. If they like hugs, they might like strokes, because Henry, you know, he's a bit sensitive. And he likes being stroked. Jamie, we've got an email from a postman. Isn't that exciting? It is. It is. You know, when I was a kid, being a postman was pretty much what I wanted to be, because a postman Pat and... Already the email, Jamie, we can email all of us. Okay. Is that happy stimming? Yes, I'm really excited. I think Robin's quite excited. It's postman Paul, and he says that he uses the podcast as a way of stopping noise. From disturbing his routine, which is very nice. And he says, thank you for the notion. Oh, a notion from a postman. Anyway, I'm... Chad, bad Jamie. Thank you for the notion of forgetting to update my face, Paul says. This has been a life-changing way of explaining one of the issues I have, which I'm really glad that's useful. So the script says, briefly explain the concept. I love this reading out bits of the script. I'm sure I'm... I don't love it. No. So briefly explain that concept. So sometimes when I'm experiencing emotions, I forget to explain it. I'm experiencing emotions. I forget to update my face. So I might be really happy. People go, "Oh, you look so sad." And I'm like, "Oh, no, no, I'm good." And then I kind of start smiling awkwardly, because I've remembered that I have a face and it needs updating. We got an email from a postman. Why are you so excited about that? Why does that affect you? Because post is a wonderful thing. Because people send you a letter. And then they go in a red box. And then it gets sorted at the post station thing. And then it goes in a van or one of those trolley things. And then the letter comes to your house, like... It's a million moving parts. And it's a very complicated system. And it's all run by people. And postman are generally lovely. In fact, when I was a kid, I was basically told that if I ever had trouble when I... And then something bad was happening. It's like policemen, ambulance, postman, shop worker, post office. Firemen. So it's like, if you have trouble, a post office or a postman is a good person. A postman is a good person to talk to. They are trustworthy, respectable people. Post people. There is representation of being able to communicate with other people because you can send things in a post like letters. You can send anything in a post. And some people... They send bad things in a post, but I'm not talking about those things. I'm talking about good things that people send in a post like SARS. No, bills. No, like bombs. Like an arsenic and stuff. But I'm not interested in that kind of post. I'm interested in when people send cards and they send... Henry came in a post, didn't he Henry? Henry says yes, he came in a post. Think of it this way. Postman Pat, he has a support cat. Exactly. And cat is... When I was younger and I didn't have as much speech or a few years ago and I had like no speech for two years, I was really drawn to characters who didn't speak. And Jess, Wally, Grommet, all of these characters that don't communicate with speech were... I really loved them. So, yeah, when I was a kid, I really wanted to be postman Pat. In fact, when we go to center parks, one of my favourite things is I always get a tricycle. So it's got a luggage space. And in the morning, I'll go with somebody down to the little supermarket they've got. And I'll pick up, you know, bread or something for breakfast. And then cycle back with it and basically be a postman for a day. Send any questions or thoughts to [email protected] Our next guest emailed suggesting that we invite her onto the show. We took a quick look at her work on Instagram and we were deeply impressed. Hi Emily, how are you doing today? Hi Jamie, I'm doing really good things and thanks for having me on. You're welcome. I have to look into your Instagram account. How could it be? It's amazing. I love your pictures. Could you tell us a bit about yourself? Sure, no problem. So I'm 26 years old and I have sensory processing disorder. And I'm autistic. I was diagnosed as sensory processing disorder aged 8. And I was diagnosed as autistic age 25. So I started my blog in 2015 when I was 21 years old. So that's why it's called 21 and sensory if anyone was wondering. So I just started my presence online with the aim to bring people everywhere together to discuss their sensory problems and now that I know I'm autistic that as well. And I want it to be recognised that sensory problems aren't something that children necessarily grow out of but you kind of learn to live and adapt with. So yeah, I live and work in the UK and I'm an illustrator and a graphic designer. And like you've said, I draw stuff for social media and I have my own podcast as well, which I enjoy doing. What's the name of your podcast? It's just the 21 and sensory podcast to try to keep it simple. How has having the autism diagnosis changed your perception of yourself? Or has it changed at all? I think what really helped was my SSS said, congratulations Emily, you have autism. Which was such a nice thing to hear because she put it across so positively. And I think I've gone forwards with that kind of same positive outlook. Like it shouldn't be a negative thing. You shouldn't have to say to someone, "Oh sorry, you have autism." It's not a bad thing. It was something I was really glad of. It's identifying a thing that is a fact that has been true all of your life. It's not like you're only autistic from the point where somebody hands you a diagnosis. Like congratulations. Have this autism. Exactly. It's just recognising something that's already there. Has it changed your sense of identity at all? I think so. I think I'm so much kinder to myself because I know that I'm different. But I know why? Because before I didn't, I had all these kind of sensory issues. And it was always really hard to explain to someone if I was struggling in a certain social situation. Whereas now, if I need to, I can just be like, "I'm autistic. I really struggle in these sorts of situations." So it's so much easier to sum up how I'm struggling. I highly advocate for others to seek a diagnosis. Even if you're not 100% sure if you're autistic, I think it's really important to find out. But also, we had an email from somebody who they had been diagnosed with an eating disorder. And that's quite common that you get that diagnosis first or borderline personality disorder. And obviously you can be autistic and have those conditions as well. But sometimes people misunderstand the way that somebody processes their senses and they think, "Oh, this could look like an eating disorder without understanding the sort of autism element to it." So I think it's really important to make sure you get a diagnosis from somebody that does understand autism. And if you go through the diagnostic process once and they diagnose you as something else and you still feel it's not right, definitely ask for a second opinion. One of the places that I know is quite good for female diagnosis in the UK is the Lorna Wing Centre, which is run by the National Autistic Society. And they specialize in diagnosing women and girls. And I know that they have supported a lot of people who've had a diagnosis of, say, an eating disorder or another mental health condition, and then actually that person may well have that condition as well, but they're autistic. And knowing that that person is autistic means that professionals can support that person better. I'm quite open about my autism, but the only place I'm not open about it yet is my workplace. They don't know that I have autism because I've been working there three years, and I only got my diagnosis last year. And I personally think it's going to change their opinion of me, so I haven't yet told them. So that's a difficult thing for me, and I don't know whether or not I will tell them. So I am still masking at work, camouflaging how, you know, I'm struggling. There is a massive thread there about autistic employment, and oh my god, there is so much to unpack there. Although I don't think we're going to have time to do it today, but hey Emma, can we have Emily back to talk about employment sometime? We can definitely talk about employment, and we can see how Emily fits into that. One of the things that you've talked about before is your use of a sunflower lanyard and something called the jam card. Could you tell us about those things and how you use them please? Sure, so I kind of used them both together. The sunflower lanyard, some people might have heard of, it's something that you can get in sort of UK supermarkets at the customer service till. So it's a way of showing if you have a hidden illness or disability, and the jam card basically that stands for just a minute card. It's something you can order online, that's available in the UK and Ireland. And it's a way of showing in a shop, also if you're getting on a bus, that you need just a minute to process what someone is saying to you. So that can be helpful if you're paying for something or if someone asks you a question and you literally just need a minute to think about your answer. When the sunflower lanyard was brand new, and most people didn't know what it meant, only the cashiers would, I'd be quite comfortable using it. But now that the public knows what it means, I worry that it makes me more vulnerable, I can be picked out as being autistic. How do you feel about disclosing your disability in public that way? So I definitely see the pros and cons of it, like you said, I think it's more useful in certain situations than others. So for example, I've heard from people that people in supermarkets are asking for them just so they don't have to wear a mask, which is not okay. But I think in certain settings it's really helpful to say if I have a hospital appointment or I needed to go to A&E or something, I think it would be something quite helpful for the staff to just visually look at me and think, "Oh, you know, she might need me to just, you know, say things a bit slower so she can process them or even open up the discussion for, "Oh, can I help you further?" kind of thing. So I don't think I'd always use it and I don't always use it in a sort of supermarket or a shop setting. But I do always have it in my bag just in case. I'm very sensitive to the vulnerability side of it because I know that my own capacity to keep myself safe varies so much. But then that's also why I have access to a support budget and stuff like that. We also used it in an airport. I think it was Heathrow when we went to America last year and the security people understood and they were extremely flexible about letting me keep my ear defenders on when I went through the scanner. And I remember the lady who did the pat down after the scanner when she explained that she was looking for explosives and looking for anything unusual. And so anything about me that's unusual that I should tell her and I kind of shrugged and didn't know what to do. And then halfway through when she was patting me down for somebody who's not blurted out something like my favourite colour is green. Because I thought it was like one of those small talk questions where, you know, how are you today? I'm fine. Is there anything that I should know? And then yeah, and she just kind of giggled at me. I think she meant have you got a bomb or anything sharp that might hurt her? I think that is what she meant, but in the moment I was so spaced out and so over the top that I had no idea what was going on. When I go to airports, I always get special assistance and they put me in a wheelchair. Now that does help with my CP. But what I have found is that being in the wheelchair is like a big sign on my head that says I'm disabled and sometimes in an airport because I find the whole security thing really stressful. Like it really stresses me out. I'm too close to people. I have to do all of these different things in the right order. It's really overwhelming. It's noisy. People are touching me. I have to take my shoes off, my belt and then there's only a certain amount of time to do it and all of that stuff. And I can't hold Henry the whole time. He has to go through the scanner and I can't hold, you know, my passport and all that's really stressful. Sometimes actually being in a wheelchair is much better because there's a bit more room. There's a physical space between me and other people and they often don't let me get out of the wheelchair. 1800 seconds on autism with Robin Stewart and Jamie Knight. It's Christmas Eve. Oh, oh, oh. As we said earlier, this episode drops on Christmas Eve 2020. So it's Christmas! Thanks, Robin. Every year at this time, parents and organisations discuss how autistic people manage holidays. So let's add our voices to the mix. So Christmas is a weird time. I don't like decorating my home. So later today, I'll be going to storage to go and get my picture of the Christmas tree. Because that way, when somebody says, "Ooh, do you have a Christmas tree?" I can say, "Yes, yes, I do." And it's just a picture that goes on top of the bookcase in my lounge. I'm also going to go and get the Christmas decoration, which is misty tints or which will go on the back of my sofa. And beyond that, I'm not going to change anything. I love Christmas and if I had someone to help me decorate, I would love it! Okay. I think I am very much sitting between those two feelings of not really loving to decorate and decorating to the max. Because I still live with my family. They're very much want to decorate for Christmas. But I do find some decorations can be a little bit jarring and overwhelming. So I definitely relate to what Jamie says. This year, I will be spending Christmas with friends. But they're the friends that are in my bubble because they've been supporting me all the way through the pandemic. In previous years, Christmas has been 10 or 11 people and I generally eat a little bit with people and then go hide in the lounge or hide elsewhere. But this year, I'm actually looking forward to it because I might actually be at the table for the entire Christmas meal, which I've probably not done for five years. Yeah, same for me. I'm actually looking forward to this Christmas being a quieter, less social Christmas, like without the need for work parties or socialisation. I'm very much someone who will gather with friends for a little bit and then go hide in a toilet. I'm very good at starting out where toilets are. So keep yourself calm and just get away from that overwhelm. I hate surprises and I hate spontaneous things. So if everyone could tell me what my presents are going to be, that would be great. And I'd still react quite naturally, I think. I get very nervous about how to react and like, I contact and stuff like that. So I've made it really clear with my family over the years. Please don't buy me anything scented and I think to do with smells because I will, I'll just give it away because only I can buy stuff that smells because I know what smells and scents and body wash and stuff like that. That's really popular around Christmas, but I can't deal with it at all. So I always end up giving it to the rest of my family if I get anything like that. Emily, do you have any tips for other people on the spectrum for Christmas? I think, yeah, I have like a few tips. Maybe I think the first one I would say is don't feel pressured to like try new foods and drinks and stuff like that. Don't feel kind of pressured socially, you know. Just stick to your safe foods, stick to the foods you like. Even if they're not festive like it's a nice time of year to spend with your family, but don't feel pressured to have to try new things and also in terms of meeting up and family gatherings and stuff. Just be upfront and say, look, I just need five minutes out if that's okay. And also I always say to my family, would you mind not touching me when you're talking to me and stuff like that? People just don't realise these little things. Those would be a couple of my tips, I think. I don't know if you guys would relate to those, I'm not sure. Yeah, very much so all of those. I suppose my three tips would be a tip for parents first, which is plan ahead, tell people what the plan is, any autistic people in your life know who's visiting and roughly when they're going to be there. If you're going to call it Christmas lunch and it happens at 4pm, then give them a heads up. There isn't lunch. That lunch is not happening at lunchtime because that's one very stressful. So yeah, so planning things early and being clear about the plan, the next thing is having a space where people can escape to, where they'll be left alone. So whether that's people going to their rooms or going to a bathroom or whatever, making sure that all the autistic people in your life know that they can escape to a certain place where they'll be left alone to recover. And then the third thing, which might sound like a slightly weird thing to say, but Christmas is just a day. It's just a day, like any other day. So sometimes some of the best Christmases I've had have had like almost two hours of Christmas in the morning, followed by a pretty normal bike ride, followed by a pretty normal lunch. Christmas doesn't have to be the spectacular one day event that we generally think it is, and actually a simpler Christmas might be a much more enjoyable Christmas, especially if you've got a lot of autistic people in your life. Thanks for joining us, Emily. Check out Emily's work by searching for 21 and sensory. She has a website and Instagram. Bye bye, Emily. Bye, thanks for having me. That's it for this episode of 1800 Seconds on Autism. Thanks for your continued support. We couldn't make the podcast without you. Please keep contacting us on [email protected] and if you don't want us to read your email out, please let us know and we won't read it out. Good luck with the rest of the festive season and remember, if you've met one autistic person, you've met one autistic person. Bye. Time's up. That was 1800 Seconds on Autism.