#92. The Historian Solving Health Inequities - Dr. Erin Beeston

We sit down with Dr. Erin Beeston, a Research Associate at the University of Manchester, to discuss her uniquely winding career path. Erin takes us through her journey from history of science and industrial heritage, which includes her PhD on the world's oldest railway station, to her current, impactful work researching health inequalities for the autism community. We dive into what "autism-informed" care actually looks like, why sensory and executive function barriers in healthcare are so significant, and how lived experience shapes her collaborative research approach. Erin also shares insights into her work on Parkinson’s, the importance of co-production in research, and how we might bridge the gap between healthcare systems and the needs of neurodivergent patients.

Dr: Erin Beeston: https://research.manchester.ac.uk/en/persons/erin-beeston/

Transcript

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Hello, hello, hello, and welcome to the Smooth Brain Society. So today's guest is someone with genuinely, genuinely one of the most interesting career paths we've had on this podcast. Imagine doing a PhD on the history of the world's oldest railway station, performing standup comedy and steam trains at Bright Club, and then ending up researching autistic health inequalities. That is Dr. Erin Beeston's actual life. Erin is a research associate at the University of Manchester, working on health inequalities in people with autism. But her background is in the history of science and industrial heritage. She did her PhD on the oldest surviving passenger railway station in the world and how it became the Museum of Science and Industry. She has contributed to exhibitions at Manchester Museum. developed wellbeing toolkits for Manchester histories, and she mentors researchers turning their work into stand-up comedy through Manchester Bright Club. I've also been lucky enough to be part of this. And she's autistic herself and is a parent to neurodiversion children. So she brings both the research perspective and the lived experience to everything she does. Welcome Erin. Hello! Woohoo! So we have a question usually that we ask everyone to start us off with. What is your origin story, Erin? How did you get to where you are now? Let's start from my journey, shall I? Yes, yeah, start from your journey. Yeah. Okay, so ~ I have to go like right back to like sixth form or something. I have to have to overshare my backstory with science. And basically like, I went to a regular comprehensive school, not not any not anyone fancy. And, you know, my best subjects were like English and history. So I've, you know, had had them down and I enjoyed a bit of drama.~ But my mock tests in year 10 or something, I just totally flunked a chemistry mock test and it was definitely equations. I now suspect I might have dyscalculia. So there's a diagnosis for everything.~ But basically, I really flunked on this, got a U or something on this mock GCSE paper. And even though I'd had like a C in biology or an A, I remember getting an A in physics and thinking I can still do physics because it just happened to be a paper that didn't have much maths in it. It happened to be quite a theory heavy paper. I got bumped all the way down to like the bottom set. And then sometime in year 11, about six weeks before they had to submit everyone's final GCSE entrance paperwork, someone was like, oh, Erin's in the top set for like English and history and like, you know, not second stop or something for maths and then like but they're in for foundation science and I was like ~ no they've noticed ~ and You I had in likes and then so they couldn't bump me all the way back up to triple science because I'd missed like over a year of learning but I had to learn like double science in about six weeks ~ but I did really enjoy foundation for a while because it meant I got to sit at the back and just do my homework for all the other subjects while people tried to set fire to things. But that's state education for you. So I don't have a strong background in science is the point of my ramble. I always loved history and I always wanted to be involved in heritage. And I did like a day, like one day's work experience for my UCAS form, which was at a castle and I dressed up as a wench. So that was very formative. It was a formative moment for me. And yeah, I went to do history at Manchester and it was the probably one of the broadest history degrees you could pick. That was why I went for it actually, because you got to do a bit of everything. And while I was there, during my ~ second year, was like, I'd always kind of had part-time jobs, mainly retail. ~ But I was like, I really need some experience because I actually want to work in heritage. And a careers advisor gave me this leaflet for the Manchester Museum that was like, come and volunteer at the... Herbarium because they needed like so many tens of thousands of herbarium sheets that needed the data cataloging.~ And yeah, so I volunteered sort of one afternoon a week for a year and a bit in the herbarium with like the nicest volunteers and curators in like this really beautiful historic part of the Manchester Museum building, which from the outside looks at little tiny bit like the Natural History Museum. It's got the same architect and it's very kind of grand looking and it's got towers on the top that are very Harry Potter-esque. And so I was in one of the towers just really doing really lovely like methodical jobs documenting things and it gave me a slightly rose-tinted view of the heritage sector I think. But I did then go on and pursue jobs in, I did a master's degree in museum studies and got lots of other experience and and worked in Northwest Museums for a while. One of which had been a part-time job at the Science and Industry Museum, or MOSI as we used to call it,~ on the presenter team. I was an assistant presenter, so I got to stand next to the stop buttons of the historic machinery. So if any of the presenters got mangled by a steam engine, it was my job to press the stop button. That was a high responsibility job.~ But I also did bit of presenting and I knew the site pretty well. So when I saw a few years later,~ a PhD come up with Chistam, which is the Centre for the History of Science, Technology and Medicine at Manchester. And it was all about the history of the Liverpool Road station site, but this kind of slightly more complex way of looking at how the site had evolved as a heritage space.~ I was like, well, I kind of know the site like really well in a very kind of interactive sense of all the bits that were open to the public and some of the behind the scenes spaces. And so I could really kind of picture like getting to grips with the PhD on it. And thankfully, I was hired to do the PhD. So that's my origin story. Bad at science, ended up in a history of science department, had imposter syndrome because I used to do social history. So I moved into the history of science. and then you guys can bring me up all the way to being an actual like fake scientist now. not a fake scientist. We big yourself up. Come on now. So. I guess what's basically telling us you're a bit of a train nerd. Well, funnily enough, that's totally what everyone assumes, Mm-hmm. but I was really interested in the site from its, you know, less from its kind of ~ functional role as the place of, you know, the oldest railway in the world,~ to how it had influenced and been influenced by being in Manchester, because social history was really my thing. and understanding how people had interacted with the site and some people's And I'm also very interested in commemoration. So a big part of my PhD thesis is actually how basically to the people whose priority interest is its role in railway history,~ the kind of narratives that were embedded by people who...~ you know, held site up as the oldest surviving railway station around the turn of the century, around sort of 1900 ish onwards until it's big centenary in 1930. The site story was told again and again by, you know, essentially railway enthusiasts, but also much kind of bigger groups of people like the railway businesses and people interested in civic history and architectural history, all kinds of different public historians. really developed this site story that it's the oldest in the world. But what I took from that was how is that then shaped how it was imagined as a heritage space? Because that big story ~ was so kind of crucial to why the buildings were saved. So I'm not kind of diminishing its significance. But what I looked at in the thesis is like, what are the layers of history that have kind of been missed because this is the big headline story. And so I tried to do kind of a chapter where I looked at like the social history around the site and there's all kinds of interesting things happening to do with the way in which Manchester Corporation had ~ policed the area and stuff, for example, and closed street markets and tried to move on. people having union meetings outside really close by and things that affected the stations every day running and vice versa. I looked at things like the transportation of goods and animals in and out of the city because it was a freight station for 150 years. It was only a passenger station for about 14. But if you get a book off the shelf in Waterstones or wherever about the Liverpool Manchester Railway, it will just tell you about the period that it was Liverpool Manchester Railway as a passenger railway. ~ basically bigger, brighter, newer stations superseded both the original Liverpool and Manchester ends of the line. But they became part of the ~ infrastructure feeding the Victoria's And so you kind of miss this like 100, 150 years of time at which they were like a really important node in the infrastructure of Manchester and the Northwest and connecting to the wider world. So, yes. No, that makes sense. It's all about the heritage behind it. It's not so much about the trains, t I'm afraid, but I'm sorry train people. yes, that kind of brings us nicely into. So, yeah, heritage trains in Manchester. How then did you transition to researching autistic health inequalities?~ I want to know the logic because I can see it's there, but I'm sure everyone wants to know more. I Yeah, it's super obvious, I know. Well, It's. I did a project for a year, did a bit of, as you know, early career research is often we work contract roles, or we work on other people's projects and things. And I worked as a year, ~ I finished my PhD in lockdown, which was bad timing. So I was kind of doing bits and bobs and then did a year as a temporary lecturer,~ actually on my old Museum Studies course, which was nice. But then after that, a position came up with ~ Creative Manchester within the University of and they were ~ working with Manchester Histories, who are a lovely organisation they do. They're a charity and they work with really closely with the City Council and different universities in Greater Manchester. to do community activity around the city's heritage.~ But they don't have a specific ~ place you go to. They do have a hub for activities in central library with pop-up exhibitions and stuff. But they've not got a big museum building or a historic collection or the resource of a big heritage institution.~ So what they wanted to look at was a wellbeing toolkit based on the latest kind of thinking around heritage and creative health. But the sources of information about the past were all from the archives held in Manchester Central Library. And yeah, so I was just fortunate enough to become their Knowledge Exchange Fellow between the University of Manchester Histories and had a really lovely year with the team and volunteers and going out to some community groups. and developing these activities that all had, it's kind of like an intangible heritage at the heart of it where we've got some really great digital resources from the archive. So some of it's like audio and video. We've worked with the Northwest Film Archive and Sound Archive as well, and lots of really nice images and things. But the activity around each heritage story in the toolkit. doesn't have to be place-based. The idea is that it can be done anywhere, in any community setting. ~ So there's like an activity about singing songs and it's like everything's kind of designed where there's a jumping off point that's maybe something in Manchester's heritage, but the kind of traditions or handcrafts or whatever it is that's being celebrated, you can relate kind of most people's past to, which was fun. I didn't answer your question. So that was a year long project. Yeah. And then from there, I saw Autism at Manchester advertise. They wanted specifically a lived experience researcher to come onto the Because Autism Manchester is a network at the university where a lot of the emphasis is on co-production. So they don't want to do research to or on about the autistic community, but with and for the autistic community.~ So very much came on board as a lived experience researcher and they were also working on a toolkit at the time So it's actually the toolkit plus being autistic link ~ rather than a kind of obvious subject specialist No, that completely makes sense. You made a toolkit and then they were looking for people who could also do kind of a toolkit and you had that lived experience so that yeah marries up beautifully carry on but don't put yourself down. Yeah, I think that's it really. yeah, I've been like hanging around ever since and it's been a really, really interesting experience because it wasn't the direction I was kind of aiming for and I would and I do still do bits and bobs of history and occasionally still support Manchester histories, for example. ~ But yeah, I've been working part time for Autism at Manchester for a couple of years now and been getting involved with different projects along the way. So I'm helping support.~ working with the City Council and an optometry lecturer and a psychology lecturer and my supervisor to~ basically~ better autism informed eye care ~ resources for the community. I mean, that's fascinating. Can I pick it up there and ask like, what do we mean by better autism informed eye care? Like what would that look like? yeah, think just to mention that like we've got some great research as a starting point for this project because Ketan Palmer, the lecturer working on it, did his PhD all about doing some autism-informed eye care practice. ~ But yeah, it's basically almost any health appointment you can imagine has many, many barriers to autistic people.~ they kind of roughly fall into two groups where there are barriers that are institutionalized. There might be prejudice, assumptions, lack of knowledge, lack of training, institutional in the sense of things that are fixed and can't be changed, like really bright fluorescent lighting in a waiting room will be a sensory trigger to autistic people, ways about their practice in their booking systems that are just terrible for people with, you know, perhaps difficulties with executive function. So there's like barriers that are like part of the institution that you have to kind of navigate to access healthcare. And then, but then you kind kind of can flip it around and see in aspects inherent to being autistic can~ conform the barriers, you know? So like, for example,~ an eye test, it's that bit where they like blow a bit of air in your eye, isn't there? And it's really close and personal to your face. And autistic people tend to have sensory processing differences to a neurotypical person. So something that might be uncomfortable to your average person, but they can just kind of go, well, this is annoying. There's a machine pressing on my face or there's someone here, but I'll be all right in a moment. Can feel really overwhelming as an autistic person because you, I mean, you guys are the brain people. You are kind of, you know, programmed in a different way. And it's often a sensory sensitivity that pushes, if go back to my lived experience, I definitely noticed that it tends to be sensory environments that trigger my children's meltdowns. You may have sensory sensitivities that run like auditory stuff, sound, be any of the senses, touch, and there's so much involved in an eye test as well. Like it's so close and personal and bright and yeah.~ Just to dive back a bit more, could you give us what is autism? I'm sure people kind of know, but they might not know the full ins and outs of what it is. How would you describe autism? so it's complicated is the answer. But I mean, we've kind of inherited a lot of categories and diagnostic criteria that may not be completely, I think are going to change soon. It might not capture everybody's experience of autism, but essentially you are processing information about the world differently to a neurotypical person.~ you will have~ perhaps different ways of understanding social cues and a different form of focus. There's some amazing research going on about monotropism at the moment, which is like, ~ if you've ever heard of special interests, which are like the hobbies that autistic people just like, this is it. You kind of comprehensively learn everything. For me, it's Queen. I was obsessed with Freddie Mercury from being about three or something. Like I can still remember when he died and I'm only 40. It's really sad. But basically I've been obsessed. I still listen to Queen every single day, which is mad. Like when I get the stats on Spotify, it's like you're like the 0.000 something percent, you like people listening to Queen this often or whatever. But like it's... So there's great passion and drive and joy in being autistic, but a lot of people don't understand our, our kind of, you know, tendency to ultra focus on things that we really like, but it can be to the detriment of other stuff. So we might not notice things that other people notice. We might not care about things that are like typical, like social norms. like when I do the comedy, like I do get embarrassed. I do worry people won't laugh. And I suppose I do have. the same anxieties as anybody, but there is part of my brain that just doesn't care. There's part of me that's just like, well, I've embarrassed myself more than this before. I'm going to say my two minutes and just get up there and do the thing because I love it. So yeah, I'm not really answering what autism is very well, I don't think. it's a whole kind of complex of different ways of seeing the being in the world. and sensory differences, I think with the autistic health inequalities research, to me, a lot of the barriers are sensory differences, but also executive function differences, which is things like ~ time management and memory and stuff like that. No, so that's well said. I guess on your focus thing, I was surprised you didn't go with the example of you doing your PhD on one railway station, which took six years. Well, the real reason I did my PhD for six years was like at times I went part time and I had like life interruptions, but it makes a better joke to be like I had just had to spend six years looking at the history of one railway station. couldn't, they couldn't tear me away.~ you No, that's really, really fascinating. So you said that that's not the only project you're doing. Are there other projects around autism you're doing? Because I guess you're involved as a lived experience person on multiple projects. So what else are you kind of involved in? Yeah, well,~ so at the moment, I've been on like a sort of secondment to work with an amazing Parkinson's researcher actually, so a bit different to autism, but still doing patient public involvement and engagement type work with ~ people with Parkinson's who have ~ experience of, we're doing a project about ~ impulse control behaviors, which I feel like I should pass to Beth to explain because...~ Yeah, basically, ~ the dopamine, the medications that can help with motor differences and really help some people's~ motor skills be kind of like brought back onto kind of an even keel tend to also ~ affect how people's brain~ seek dopamine. So their dopamine agonist medications.~ And this isn't any kind of official explanation, but my lived experience explanation is to me when I when I've read about this stuff, it feels like it's it's it kind of mirrors the way ADHD presents in some respects, not the whole condition, but in the kind of impulse control behaviors. So it's that kind of not being able to sort of combat and urge your brains just do the thing you've thought of the thing do the thing. And because I identify as all DHT because My kids are ADHD as well as autistic, but their waiting lists are crazy. So I don't have the certificate, but I'm pretty sure I'm both. ~ So I can't relate to people's experience with Parkinson's, of course not. ~ I listen to people, but I do feel like I can relate to the impulse control. Like I walked through the kitchen earlier and there was a gingerbread man on the side from Saturday that my six year old hadn't eaten. And I was just like, oh, well, that's going to go to waste. I'd eat that. Then next thing I know, I'm just eating it. I struggle a bit with my weight for that reason. But one of the key differences, I think, is that people with ADHD have kind of usually been this way your entire life and learn all kinds of coping mechanisms. unfortunately, for some people not, because there's a lot of people with ADHD who might have problems with addiction and gambling. and so on, but there's a lot of people with ADHD who do manage their kind of impulse control behaviors. But I think it's a real shock to the system if you haven't experienced that and then you're suddenly on a medication that's giving you a different,~ yeah, just completely altering your brain chemistry so that you've got poor impulse control. So I'm supporting a, it's like a prototype ~ that we're developing of an app that is gonna hopefully apply some psychology to ~ managing impulse control and it's like a kind of start stop experiment with involves images of ~ you get like a collection of images but you can select the thing you're having the trouble with your impulse control behavior so if you're eating too much you might select the pictures of cake to come up as part of this but it's all it's all really development level at the moment and just working on the prototype and so I work with Ellen Poliakoff who's the expert in Parkinson's, a really ~ creative guy called Simon from the software development team at the university, but most importantly the people with lived experience with Parkinson's who kind of come in and look at bits and bobs that we've written up or prototype bits of the design and go hang on a minute, like that doesn't make sense ~ and then we go away you and change it and yeah so it's been a really fascinating project to be involved Yeah, I think you've, I mean, from what I know, well, I mean, like I did just a PhD in Parkinson's disease. So I think I'm fair to say, yeah, it's, yeah, it's, it's, it's really sad. Maybe people have seen some news stories about the man who, I think he lost loads of money, got arrested for some of the impulse control problems he was having with Just to say though, this is pretty rare and it's monitored pretty well. So it sounds scary. These are extreme examples. of these, some of them can just be a little bit. small things that don't affect your life as far as some of the bigger, more scary stories. So not to scare anyone about taking medication, Yeah, yeah of course. living with Parkinson's disease, please do take it. That's very much the area we're working in actually, because what we're suggesting and it needs testing, this is a prototype we're developing.~ But what we're suggesting is that by using, it's like brain training essentially, by using this kind of app every day for six weeks, we've got various kind of ~ taglines that we're developing. We kind of like thinking like how you kind of press pause on your impulses you and like how you kind of practice in stopping. And so it's kind of like a brain training thing. So it's much more suitable for people on the very moderate side of this experience. it's more like, ~ so for me,~ it's so complicated. Does it be like an autistic researcher? Because for me, it's not a problem at all that I listen to Queen every day. But for someone who that's their impulse control behavior, if they are playing it at full blast at 11 o'clock at night, because they just cannot get enough of We Will Rock You. That is when it becomes a problem for like their family and their loved ones or people they live with or you know, whoever around them in the neighborhood. And it's always, so we're kind of pitching it more to the ~ people who, you you might be experiencing something that's causing you problems like perhaps overeating, perhaps shopping too much ~ or yeah, playing. I'm not sure there's anyone out there. This is my imaginary person with Parkinson's who's got on board with my monotropic interest in Queen, but bear with me. Like if you're doing one of these behaviors, it's the hope is that this will be able to help people. But we absolutely say in the app and are going to be providing information about where to go for more support that if you have any concerns about impulse control from your medication to see your GP or your prescriber. We did hear about a guy who bought seven wheelbarrows. That's the kind of people we're aiming for. You Yes, yes. I need to cut that bit out. No, no, no sex and so, ~ are you doing both the vision and the Parkinson's research at the same time or is, one kind of finishing and what's starting. So yeah, we're just finishing up with our focus groups and ~ really preliminary part of the prototype research for the Empower, it's called the Parkinson's project, we ~ try to sort of merge the words Empower with, it's spelled with an I, so like impulse control. So yeah, that's ongoing with Ellen and the team behind that, but my part helping them will finish.~ soon-ish and I'm just about to get going with the optometry project which we will be working with some students on in the we'll train ~ students to basically the students who would do service learning as part of their degree anyway but we're going to give them autism specific training around you know what kind of considerations you might need to make with these patients. and then we go out later in the year in the in the autumn, take the students with us and their nice new training and provide some information for autistic people in the community, kind of like community centers type places around the city of Manchester and it's going to be about kind of hoping to kind of give some more background information as to why certain things are being done. Like I certainly know as an autistic person, sometimes you just need an explanation. If you're kind of a bit taken aback ~ by a kind of expectation, sometimes just that bit more concrete information about, look, this might happen, but it's been done because of this, then you might think, okay, you know, it's kind of perhaps easier for you to manage your own expectations around it.~ And then the optometry students will be able to do a not a full eye test or anything comprehensive, but they'll do a check on people who would like to have their eyes checked. It's like a screening and they'll be able to provide some information for anyone who may need an urgent eye test or might be able to sort of describe whether or not. need one in the next year or just something like that and the hope is that it just kind of will help reduce some of those barriers for the people who come along and Emma Gowan my supervisor on this I know that like what she'd really like is this is also a pilot and it would be great if it could be rolled out to like more service learning because there's a lot of degrees at Manchester that train people to be healthcare professionals and apart from you know people may be doing like one one-hour seminar on autism or something they're not really embedding that kind of practice ~ into the learning and as we become increasingly aware like diagnosis rates for all types of neurodivergence are going up and up and there is like a sizeable number of the population who would need these adjustments to have like equitable healthcare. Do you think that if we were to change, so you talk about maybe you'll change the way that eye care is done for people with autism. Would that be something that would it not benefit, but it would make no difference to people who aren't neurodivergent? So why are we not just doing something that helps people who are neurodivergent and doesn't necessarily affect those who aren't? Would that make it easier? Yeah, I think like a lot of the things that we found during my first project with the team was a more general kind of look at health inequalities for autistic people and it's you know, almost every recommendation that makes neurodivergent people more comfortable in different spaces benefits many different types of people and some types of people with other kinds of disabilities, but sometimes just people feel more relaxed and comfortable anyway. Some of the biggest barriers I think are, well, obviously money in the NHS, but sometimes just the parameters that people have to work within in a physical sense. So, you know, when hospitals are in old buildings or new buildings, but they've put like, you know, 100 fluorescent light strips in, there's all kinds of things that would make environments calmer and more for neurodivergent people that make healthcare more accessible for everybody basically. I mean the example which you said about ~ explaining what's going on a little bit better. I feel that would be very helpful to me as well as opposed to somebody coming really close to my eye and popping dust in it. If you told me why that would help me myself as somebody who's not autistic. So I assume that certain things like that could just help Yeah, think there's, I don't know really the kind of, like this kind of sociological reasons that the power relations as such have always been in a way so that as the patient you will receive the letters telling you to go to, I don't know if it's a hospital appointment, to follow the yellow line to ward BA, you know, 10-4 or whatever. You know, a lot of the time you don't get additional information without going away Yeah. and researching yourself or occasionally for appointments I have, you do get additional information, but it but it's like wedges and wedges of photocopied stuff and you're not quite sure why you've received it. But I think the power dynamic historically is very much like you're the receiver of information and you must turn up and be on time and that's your of the contract. But Really, there needs to be more transparency about a lot of healthcare. And quite clearly, like the limitations of money and time are part of this, but also it is just about alleviating, I think, anxiety on a wider sense. You know, like I was just saying, like how for your kind of typical average person who might not have a neurodevelopmental difference can still also get anxiety and concerns about health appointments. And a lot of the~ tools for autistic people would help with that. So for example, one thing we use with my kids a lot, social stories. Now it might not have to be this level for everybody because the social story, the idea is you kind of put the person as a character in a story. So ~ I was having an operation, so I had to kind of position Oscar, my son, as ~ the person visiting me and stuff like that. You probably don't have to go to that level, but... certainly like a step by step and one of the~ slightly positive offshoots of Covid I think is quite a few hospitals started doing like 360 videos of where they were like their wards and stuff and I certainly looked at them during Covid where ~ somebody had taken it even probably just a mobile phone on a a tripod or something and like filmed going in all the different rooms and stuff of where you are ~ But like that level of information beforehand, even if it just takes you five minutes to watch the video or some printouts that are like, as you approach, you're going to see some traffic lights and a crossing and this way and that way, actually just ignore them, go this way. know, just all of these things will start to break down someone's anxiety. So if you have got, you know, the health concern is your main concern. you're not being distracted trying to figure out all this other stuff. And autistic people I've spoken to as part of the Health Inequalities Project, know, people will go and practice a route beforehand, for example. I've definitely done that. Like, I mean, especially because I had a COVID baby, and it was at different hospital to where I'd had my other baby. We did like the drive a few times just to try and calm me down. But I suppose it's taking away the need for someone to take on that level of individual and I'm going to solve for it. And I think it's one of the things that. I really don't like ~ dividing people into levels or categories with autism, but I suppose one of the things that differentiates people who I suppose are kind of coping navigating these systems would be,~ so for example, in that instance, I had the time and the resource and a partner to help me do a practice run, right? And in a car, if somebody's got maybe limitations, And again, it might be nothing to do with levels of autism or anything, but you could have like financial limitations and not be able to get the bus twice or not be able to get someone with a car to drive you and help Or if you do have more complex difficulties with your autism and some intellectual disabilities as well, for example, you're going to really struggle to do that. So what we need is people to, when you've arranged a healthcare appointment, provide you with clear yet comprehensive information that will mean that you feel comfortable navigating that environment, whether it's the directions of how to physically get to the place, but also perhaps more importantly, how to navigate the situation, what kind of waiting room is it? going to be like, is where you're going to be sat going to have loads of people walking past or is it going to be a quiet space and you know. And I guess like, I just add to that, Yeah. because I mean, from what you're saying to kind of add a little more to that kind of the questions. What would her healthcare system actually look like? If it was like for people with autism, would you redesign it and what would you change? It can just be a few bits that you think like a few things that we could do rather than the full redesign. Otherwise, we'll be here for a few days. Yeah, ~ I read some papers when I was first looking at health inequalities and there's some good research out there around communication preferences. So phone calls, I mean, I hate them when you get a letter saying you have to call to confirm.~ It's not a preferred communication style for autistic people. I don't know. I don't actually know the details behind it, to be honest, but I imagine it's because we're robbed of any cues whatsoever and we struggle to read social cues,~ but apart from the tone of voice, but you may have struggle, you may struggle to decipher that. So, ~ and I get so frustrated, this much to me being a grumpy person rather than an autistic person. But when I've been told to ring to confirm and you ring and they ring out and they don't have an answer phone and you're having to constantly phone and Also, there's an element of executive function as well. I'm constantly having to set myself reminders because I have lot of appointments for my kids' health as well as my own. And when you're like, ~ you must ring this number to confirm, or I must send this slip back. I've been sent letters before where they're like, if you don't return this slip within four weeks, you'll be discharged. The last time I got one of those, the letter didn't arrive in the post till the two-week mark. So if you'd been on holiday, you could have missed that. Goodness me, just the systems. I think the systems for the appointments would be definitely the starting place because I would suspect that one of the reasons autistic health inequalities are so wide is, I mean, let alone improving things people who've made it to the appointment and walked through the door. There's going to be a lot of people who will have given up before that point. Yeah, completely. So basically that's just something so simple to do. just like, we just need to make sure we've got communication preferences and we're actually like sticking to them. Yeah. Yeah, that's it. Well, I guess it kind of moves on to like a question that I like to ask every time. ~ Let's say you have unlimited funding. You've been given a two billion pound grant.~ The ethics committee are on holiday for two weeks. And you know what, Erin, they trust you. You They trust you completely. You So what would you want to do? What would be your, and it can be in anything, because I you span a few areas at the moment, but what would your research be? wow. See, now I feel bad abandoning my people in the waiting room if it's not about health inequalities. yeah, can be. Up to you! I mean, like definitely an overhaul to the appointment system as we were discussing, but that might be on the remit of a research project. Mm-hmm. Yeah, I've actually proposed some research and so I don't know if we'll get funding. So I can... steal the imaginary to billion for it, regardless. So I'm interested in bringing together my areas of lived experience research with heritage again. And ~ one thing I'd really like to explore is autistic communication preferences and the autistic joy and the autistic imagination in heritage practice, because when people talk about access, to heritage spaces. It's very much in, now I sort of say there aren't people doing good work out there, but it usually means in a very kind of practical sense. So you do get some great like museums and organizations who will do~ social stories and like my kids have had like sensory backpacks and the most wonderful encounter was, it's actually at, hang on, I think it was Windsor Castle trying to. remember a little while ago we were down we were down for Windsor Legoland was the headliner but I got to take my kids to Windsor Castle and somebody had said on something on the on the website or something when I was reading bare pages about autism they'd said about like ask for a sensory bag or something I thought it would be like one of these rucksacks you sometimes get at a museum that come with some things of different textures and some fidgets and sometimes some ear defenders and tools to explore an exhibition. But actually we were looking at some stained glass in, I think it was St. George's Hall, and the guide came rushing up after I'd asked for it and opened this like velvet pouch. And what it was was physically the tactile materials from the room. And it was quite fragile stuff, but like there was the truss there, which was nice as well. So my son got to kind of hold~ After the fire at Windsor, they basically had to re-kit loads of this particular area of the castle out. So it was like, this is the kind of wood we use, this is the kind of glass and like, so that kind of object encounter ~ was really special and really memorable. And so I'm more interested in that kind of heritage access. And the thing that I mentioned about the imagination and social communication preferences is that in the deficit module of what autism is if you're just looking at the diagnostic criteria, especially a book printed like 20 years ago, everything's negative. And one of the things is about like spontaneous play and stuff like this and like how much structure autistic people require, but it's all in a very negative way. But if you look at recent research ~ about like games in particular, like role-player games, board games, anything where... someone sets you some kind of framework, people can be hugely imaginative. In fact, some of the most creative people I think in the world are autistic and it's just been massively overlooked for years and years. And what I would like to do is explore that in a heritage space. So what I proposed, I've worked on a proposal with English Heritage to look at some work they'd already done in the past with folklore stories, but how... perhaps working with like a D &D master and some creative practitioners to do some work with neurodivergent young people where you actually give them the autonomy as well ~ to direct how a story goes, how they can use local folklore traditions, the spaces of a castle and the way in which they communicate and they imagine and perceive things to create something for like all visitors at those sites. So that's the thing that I'm really excited about at the moment. That sounds really good. It's basically just saying we're taking all five senses and we just need to be, you know, to get fully involved and immerse ourselves.~ It's a good way. Yeah, that sounds fantastic. And worth two billion pounds. We'll test this across all castles in the UK. There's a lot of castles! We need There's a lot of castles. Hehehe. Whoa, whoa, autistic engagement at all of them!~ I mean, that sounds incredible, isn't it? ~ do we have, is stupid enough for the sheer number of castles we have around the UK? It's a question. Hahaha! I mean, we can up it to three billion if needed. Not a problem. Not a problem. Not a problem. The ethics committee aren't here so we can, we can all be a little bit silly here. I'm I mean, all of sounds ethical, So I guess, yeah, does sound ethical. So I guess something from the research you've done, is, lived experience obviously with your children as well, what is something about autism that people do get completely wrong? I think it is that imagination point and a lot of the stuff about play. So yeah, just to emphasise that currently, until I get some funding, currently this isn't my area, but my lived experience, it's just... So I have to read a lot of really pretty hideous paperwork, particularly about my youngest son who has an EHCP and literally there was a line in it, a couple of... weeks ago that says he has no empathy, which is just not true at all. It's just that autistic people, I've gone a bit from imagination to empathy, but it will make sense in a moment, but this idea that autistic people aren't empathetic is so, Later. so redundant because it's just totally based on a neurotypical assumption of what empathy looks like. And it's my personal experience that autistic people do not like to lie. Unless we're specifically acting or putting on a stand-up comedy routine, we're not going to tell fibs. Like, we're going to be genuine. And if we don't respond immediately,~ I don't know, if I'm picturing my kid in the playground, if someone's, if he's hurt somebody, which unfortunately happens, but it's been in like kind of flight or fight kind of response, like because he's in distress or a sensory trigger, something has happened to him. he can't regulate and instantly go,~ sorry, because that's not genuine to him in that moment. Maybe what tends to happen is he'll maybe process it later and then apologize in a different way. So instead of saying, I'm sorry, to kind of meet your kind of social expectations, he might like do a drawing or take someone a flower or you might mention somebody to me and be like, yeah, so and so really likes that program. And then I know he's been thinking about them. And so it just doesn't look like neurotypical empathy. And just connecting that to the imagination, it's this whole idea that just because you don't, when they're measuring my kid and they're looking at his play, he likes to play a load a lot. He likes to do parallel play. He loves playing alongside people, not really interacting in their games, mainly because he's got a really strong drive for autonomy and wants to play by his own rules. But the imagination is huge and amazing. And it's like, just because they're in the classroom and they haven't picked up a teacup and saucer and aren't playing like a nice, like dolly picnic game with everybody else, doesn't mean they've not got the capacity to imagine that happening. And often what I see with my kids is if they're given a starting point, if they're given a framework, I mean, it's almost like teaching a GCSE drama class or something. If you say your character's this and you're going to be doing this. Huh. And I've heard my voice negotiate outside playing like, oh, we're going to be saving the universe and you can be Astro Bot and I will be Mario. they've got like a kind of set design of, you know, where they'll have loose rules. Then their imaginations go wild. And I don't know the social communication research behind this. There must be. There must be some kind of element of, I sometimes think permission, but I don't know if that's just my personal view. It's almost like you just need a starting point and then you're away. Like even for myself, if I'm writing an article or a blog or like talking to you guys, I just need a starting point to think, yeah, and this and this and this and this. And it's just because it might not be as spontaneous as for a neurotypical kid doesn't mean it's not wonderful and rich and imaginative. Awesome. guess one question for me then, because we're running out of time,~ is what you've been or you are a stand-up comedian, do heritage research, do autism research, worked on many projects. What's your favorite part of your, what's been your favorite part of all your roles so far? I don't know. I can't pick us favourites here. You~ I love collaborating. I know it sounds so cheesy when you do like an application form or something. like, I'm a team player, but I really am. I think my instinctive dislike of hierarchy makes me an excellent team because I really like hearing from everybody. I've always valued different people's voices. I remember years ago when I worked in museums and I'd sometimes do like an object ID or something with the, which is when like a member of the public will bring something in and be like, what's this? And like, you know, I'd always just be like, try and be on a level with people. Like, I don't really like the idea of experts and non-experts and those kinds of dynamics. So I just like working with the public as long as they're nice to me. Don't be mean. I like working with the public and I like working with. you students and ~ I've been really fortunate, really lovely people working ~ with me in my last few projects, know Manchester Histories and Emma and Ellen ~ at the University. So yeah, I guess it's just the people. Brilliant. Beth, any final questions? Nope, think that was the one about what people get wrong about people with autism was my end one there. guess, well, I guess very, very, very quickly, I think a good one to end on is a quick question and answer is, what do you hope your research contributes and the legacy you want to build? I would just like to... ~ And this has changed so much. Like it's such a cliche to say that like having kids changes you obviously it changed me immensely because that's how I recognize my own neurodivergence, but also advocate for them. There's somebody whistling. there's a police car, sorry. You They've come for you Beth. ~ Sorry I got distracted. Bye! Let me turn off audio.~ Yeah, yeah, what, what, is that question really like, what's your legacy? what you want your legacy to be, I guess. Yeah, know I probably when I was younger, probably had some kind of haughty idea of like doing some stellar historical research and, you know, having me on the name, having like a spine of a history book that everybody had to read for A level or something, some kind of some kind of like slightly over the top But but now it's much more just like I would really like to contribute to research that does make things better for people. I mean, whether that's like feeling more sense of belonging at your local, I don't know, heritage space or, you know, feel like you belong. Or whether that's more specifically the autism advocacy side of things, like I just really like ~ the next generation to like grow up in a world where there's just a lot more acceptance of difference and in all its forms, not just... have to tell me to pick up my kids. Okay, perfect. I guess that was a perfect answer. Okay. the alarm is a perfect time to end then. So thank you so much, Aaron, for coming on. You're very welcome. I hope my garbled responses made sense. I get very excited. It was great. Hopefully we can have you on again later for longer. until then, take care so much. Thank you everybody for listening.~ Bet's on mute with cops behind her, so we'll let her go as it. All good, I've taken it off now, they've gone. It's just me and Moose aggressively peering. Awesome. All So thank you so much. Thank you everybody for listening and until next time, take care. Bye.