Autism 2 david and bethany podcast

The hosts of the What a Pain podcast discuss the increasing prevalence of autism and neurodiversity in clinics. They introduce the topic of mast cell activation syndrome (MCAS) and its potential link to pain conditions. MCAS is an immunological diagnosis where mast cells, which release neurotransmitters like histamine, become overly active or break down abnormally. This can lead to allergy symptoms and potentially impact pain pathways. However, the clinical impact of MCAS on pain is still not well understood. The hosts discuss the importance of labels in diagnosis and the need for further research on MCAS and its role in pain generation. They then introduce guests David Moore and Bethany Donaghy from Liverpool John Moore University for further discussion. Hello, and welcome to the What a Pain podcast. My name is Conrad Jacobs, and I'm Glyn Williams. And today, in episode two of season two, we will be talking to John Moore. No, we will be talking to David Moore. We will be, we will be talking to David Moore and Bethany Donaghy, who are both from Liverpool John Moore University, about autism, a subject that we've covered before. But why are we talking about this again, Glyn? Well, I think for a couple of reasons, really. The first one being, it is becoming such a huge thing. I know we've talked about it in more than one episode, really, in the last season. But, you know, the amount of autism, ADHD, neurodiversity that we are seeing coming through our clinics just seems to be increasing with time. And I think you were telling me the other week, Conrad, there's up to about 60% in your service at the moment. And I genuinely wouldn't be surprised if that's what it was for us as well. But equally, you know, there's a lot of people, therefore, who are very interested in this topic, a lot of people who are studying it and both David and Bethany have published papers recently in the last, I don't know. And both Bethany and David have been part of a group from the John Moore's University Hospital in Liverpool, who have been publishing work and data around this area. So I think it'd be really interesting to talk to them to get their perspectives. Definitely. And just to return to that 60% number that you mentioned, a small number of those children have actually got a diagnosis, but the large majority haven't got the diagnosis yet. And so we suspect strongly that they are on the autistic spectrum. But because there's often a delay in diagnosis that puts, that makes, sometimes makes it difficult for pain management services, of course. But there was something that you wanted to talk about today. What was it? Yes. Well, it's, this is, again, I suppose it's about the anecdotal maybe rather than the exact numbers. But it's just something I've been noticing over the last six months to a year in the sense that I'm having increasingly numbers of young people who are coming to our clinic with a diagnosis of Mast Cell Activation Syndrome, which is something that I must admit I've not known an awful lot about in the past. And it's interesting. And could you tell us a little bit more about what it is? Well, Mast Cell Activation Syndrome is really the abnormal... So Mast Cell Activation Syndrome is an immunological diagnosis. And it's really around the fact that some people have mast cells that are either overly active in the sense that they sort of break down and act abnormally, or... Sorry, it's really bad. And what are mast cells? Sorry, I'm just being a bit thick. But, you know, it might be good to kind of for people who are non-medics, if that makes sense, to explain it. So Mast Cell Activation Syndrome is an immunological diagnosis. And this is part of our immune system. We have mast cells, which have many, many functions within our body, but they sort of break down and release many different neurotransmitters. The most common one that we know about would be histamine. But there are a group of people who have a diagnosis whereby their mast cells are acting abnormally, either that the sort of products of them are being released in higher numbers, or that they break down in an abnormal way. And this can lead to a multitude of clinical signs and symptoms. The main ones being around allergy, as you might expect, and people with very severe diagnoses of these can have anaphylactic type or anaphylactoid type reactions or presentations. But it is being linked with pain. And it's really interesting because if you look at the science of it, and I know we're not a science podcast, and I'm not an immunologist, so we're not going to go into this in any huge amount of detail. But there is an immunological mechanism to the production of pain. And the sort of neurochemicals that get released by mast cells do impact on the pain pathways. And so there has been postulated that these... and it's been postulated that the neurochemicals may impact in different ways on different parts of the pain pathways, peripheral sensitization, central sensitization, the neuroimmune sort of generation of the pain pathways. And so therefore, you might well see pain conditions that come. And so it's been postulated in neuropathic pain, it's been postulated in migraine, it's been postulated in abdominal pain. And so there are some very good reasons that these... that patients who suffer from this could potentially have an impact on their pain pathways. The problem is what we don't know an awful lot about is how that clinically impacts. And so we are seeing, or I seem to have been noticed that I seem to be seeing more young people who are coming to us with this diagnosis who are on various different medications, antihistamine type medications to try and ameliorate the effects of this mast cell degranulation, who also have pain. But the clear link between whether that's causing their pain or not is not necessarily there. And it's becoming a little bit where the way that it's been explained to the families, they come with this, well, I've got this problem, and it's giving me the pain. And so I can see that there are echoes there of various things we've been through in the past. I know it's controversial, but you could talk about the Ehlers-Danlos and hypermobility population. And so it's where, you know, association and causality, that becomes a little bit blurred, because we're not really scientifically there at that point yet. And so these children come to your clinic and with a diagnosis, and the treatment that they've been given clearly hasn't been helpful, otherwise they wouldn't be there. So does it matter what kind of label they have? Because they all need pain management anyway. Well, I think that's the point. I mean, you know, you could say that treatment has been successful because, you know, it's helped them with their allergy type presentation. But equally, you know, they come with this other, again, to use your favorite term, Conrad, the persistent physical symptoms. So they often come with pain, they come with tiredness, all the things that we see in our pain clinic very, very often. But my point being maybe where I have that slight concern is that they have a label. And, you know, again, I'm not trying to take it back to Ehlers-Danlos and hypermobility, but you can see a similar pattern there, that they also have a label. And it's about whether that label is a good thing, but that label is not a good thing. And again, is it an association? Is it causal? Or is it actually just an anecdotal thing that we're noticing more and more? But you just worry sometimes that these things create their own almost stable type effect. So I just find it very interesting that it seems to be a new group of patients that seem to be appearing on my radar more often. And I suppose my biggest worry, and maybe where my worry has come from, is that they are patients who tend to come through our service, but they've been extensively investigated in the private sector. And so, you know, is this a diagnosis, again, that is coming more out of that framework, which has caused problems in the past, than it is maybe saying that very well? Yes. Is it a diagnosis that is coming more out of that framework and in that population of patients, which has caused issues previously? Again, it's something I'm just interested, you know, it's a new thing. And maybe again, it's something we need to get somebody in the podcast to in the future to come and talk to us about. Yeah, I completely agree. That's very interesting. We haven't seen many, I have to say, in our service so far. For me, a diagnosis is not a problem, unless it acts as a barrier towards engagement with pain management. And to some extent, I don't really care what people feel is causing their problems, as long as they are on board with the treatment. Absolutely. I mean, I agree, fundamentally, that that's what we're all looking for. But I do know, you know, from the years of doing this job, that sometimes that's not always the case. And if you, you know, it's, it's, again, it's back to this individualized thing, isn't it? You know, we can't just lump all patients together and put them all in the same thought processes in the same categories. But if you add in labels, it's just good for some people, it's not good for others. And so I think, you know, if you can take that science and use it appropriately and use it accurately, it's such a big thing. So I'm not saying for a second that, you know, this MCAS is not a real thing, or that it shouldn't be thought of. What I am saying is, we just need, by the looks of it, we need a lot more work to understand about its place in pain and pain generation. Okay, that was very interesting, Jim. Thank you very much. So we move on. Should we listen to David and Bethany? Yeah, let's go and see them. Great. All right. So here we are with Bethany and David. Very pleased to have you on the podcast. Thank you so much. Well, thank you for inviting us. Really, really happy to have a chance to talk to you both today. Yeah, looking forward to it. Great. And we're in four different parts of the world, really, kind of. David, you're in York. Bethany, you're in Liverpool. Glyn, you're in London. And I am in the Netherlands, in beautiful Groningen, in the north of the Netherlands. As you know, we always have, we always start with a number of questions to try to get to know you a little bit better. So Bethany, first question is for you, really. What is the most beautiful place on Earth for you? So I'm going to be referring to Disney World here as the most beautiful place on Earth. I mean, typically, people would go for somewhere really picturesque and scenic. But for me, Magic Kingdom, there's nothing really better. It's somewhere I hold very close to me in terms of memories and experiences. So for me, that's the most beautiful place on Earth. And what's your favourite character, Disney character? So my favourite is Belle in The Beast. Bethany, I can tell you a story. That's why I can sympathise with what you're saying. It's one of my most precious memories of my daughter. It's when she was about four years old, and we took her to Disneyland, and she met Belle. And she genuinely thought she was real. And the look on her face is something that, you know, money can't buy. Unbelievable. It's such a special experience. It's just amazing, really. Unfortunately, she has grown up since then. I've not. What about you, David? What's the most beautiful place on Earth for you? So I think for me, I would have to say anywhere that has a coastline. I just love being near the sea or the ocean, whether it's a beautiful tropical, you know, tinkling, you know, glass-like blue lagoon somewhere, or the North Sea off the coast of Scarborough in February when the waves are kind of 15 feet high. There's something about the distance looking out into the sea that just feels the one time that maybe I can really get any mindfulness kind of into my life and feel calm and at one with the world. There's something about most beautiful places that requires one to be calm and peaceful, isn't it? Yeah, I think so. I think there's something about being in a very idyllic spot where you just, whatever it might be, causes the stresses and strains to kind of melt away for a while. So, David, that probably brings us right 180 degrees. I'm going to ask you now, though, for something that annoys you. So this is the probably the bigger challenge, because I think I probably have a bit of a reputation, somewhat reasonably earned, for being someone who manages to get annoyed by almost everything. But I think probably the thing that really sticks with me is anything where there's injustice or sort of selfishness towards a person or kind of group of people. It frustrates me when people get the short end of the stick and a lack of time to understand another person's perspective. I think it's something that's kind of been a part of my personal life, but also the professional side of me for the last few years now. And Bethany, same for you. What annoys you? So my topic really builds on that as well. As an autistic person, I find tokenism really difficult and annoying to deal with, especially now that it's very so needed. We're looking more and more at hearing the voices of neurodivergent people. However, there seems to be this kind of approach at the minute, which appears more of a tick box where some people perhaps don't have the best intent with speaking to neurodivergent people. It's more for their benefit as opposed to the neurodivergent community. Do you think I'm getting better with time? Sorry, did you catch that? I was just asking, Bethany, whether you think that I can understand why it annoys you completely, but I just wonder if you think things are getting better with time. In terms of tokenism or? Well, in terms of, you know, people, well, I suppose, yes, tokenism, people not, you know, in the sense of people not doing it as tokenism, but people actually being genuinely or sort of genuinely addressing, you know, it in a way it should be. I think it is definitely getting better with time. I think we still have a long way to go in terms of listening to what particularly in this instance, autistic people need. But yeah, I think we're definitely seeing a progression. We're moving in the right direction, but I think we still have a way to go. And can we just ask you for the podcast? Because I know sometimes terminology is very important to people. And some people obviously have certain views around that. And I don't, we don't want to sort of drift away. But do you mind us calling it autism and autistic? Or would you prefer us to call it neurodivergent or something else? So for me, in the context of an autistic person, saying autistic is fine. When I describe things as neurodivergent, I'm referring to the collective of neurodivergent conditions. So the likes of autism, ADHD, scalcula. So for me, if we're just speaking about autism, and for the community by that means, autism or autistic tends to be best. Thank you for asking. No, that's a pleasure. I hope, you know, I hope I get it right all the way through. Bethany, can you give us another example of tokenism? In terms of people using people's autistic experiences for bad or? So, for example, some people... What do you, what do you, yeah. So some people sometimes use autistic experiences for financial gain, autistic experiences for financial gain, leverage for making themselves as a company, for example, look better, they might say that they are neurodiversity affirming, for example, when perhaps they have one autistic person in the company, and they kind of deem that as being, they know the right way to support neurodivergent needs. And I think sometimes that is becoming a bit more popular with the rise of the conversation about neurodiversity in the workplace. And I think to add to that, I think we get a real challenge. And I think neurodiversity is probably a place that I think we see it really clearly. I think with the move towards a kind of co-creation and research and inclusivity, I think we're seeing an increasing number of people where there might be a tendency to run an idea past someone. And I mean that literally by kind of running with the idea while kind of yelling it out of a window. But I think what hopefully is starting to improve is genuine co-creation where there's a real commitment to working with the community, whether that's a neurodivergent community, a chronic pain community, you know, a wider kind of patient group. And actually, although that process is slower, it takes more time. And I think in academic circles, it's a bigger investment. But I think what you get out of it, or certainly what I've got out of it in the last few years since we've moved towards that, is a far, far better quality of research when we kind of get to the other end of that journey. Great. That's great. Guys, I'm really sorry, but for some reason, my internet connection doesn't seem to be great. So, there's a bit of a lag, certainly on the video. You're kind of often in still positions. So, I'm having slight difficulties following things. Is it difficult for you guys, or not really? I'm finding it fine at the moment. Yeah, no, it's good for me as well. Would it help if we turn our videos off to kind of help? I don't know if that helps with the bandwidth. It might help with the bandwidth. But at the same time, it doesn't help with kind of just connecting, if that makes sense. And kind of knowing, yeah, just knowing kind of, you know, seeing some of the visual cues. I think we'll just keep it as it is. Don't worry. I just wanted to make sure that it wasn't the same for you guys. The other thing is we can, you know, the bits where we may talk over each other, because of it, we can edit out. Yeah, yeah, completely. Totally. Yeah. So, Bethany, how did you get into research in pain? So, researching in pain was kind of a roundabout way for me. I started working with Dave back in my second year of undergrad, who was then the module lead on a third year module, which was looking particularly at pain experiences. I ended up taking this module, loved learning about pain, research in pain, and decided to continue looking at pain in my master's. And I've never looked back, really. So, I think my gateway into pain was Dave, really. Okay. So, then we need to ask Dave, really. Dave, how did you get into research into pain? So, I think I was spectacularly naive when I first got into researching pain. So, I completed a PhD, specifically looking at cognitive processes and autism. And as that was coming to an end, saw a short-term contract to go and work at the Bath Centre for Pain Research with Chris Eccleston and Ed Keogh for 15 months, looking at cognition and pain. And I still remember after being fortunate enough to be selected for this job, thinking, well, I mean, pain's this physical thing. I don't really know what they need a cognitive psychologist involved in this project for, but it looks interesting. It looks exciting. You know, I'll learn some new skills. And within probably three or four weeks of starting that job, talking to the clinicians, talking to the researchers, I was absolutely hooked on pain research. I'd completely seen, you know, the fundamental role that psychology plays in how we experience these sensations. And since then, I've really never looked back in 15 years now. I love being a researcher in the field of pain. I think, can I ask you both? This is my hobby horse question, because I ask it everywhere I go, every time we talk about autism. But, you know, I've been doing chronic pain now 15, 20 years. And the number of, I mean, not just autistic children, but neurodivergent children that we're seeing in our clinics is rising exponentially. And it's, you know, it's continuing to rise. I mean, I think, Conrad, when we first started the podcast a year ago, we were talking 30, 40%. And the last time we chatted, you said you thought 60% of the patients who you were coming through. And so I suppose what I've always wanted to know is why. Why are we seeing more and more of these children? And I appreciate that we could talk about pain specifically, but it's not just pain. Lots of specialities are reporting that they're seeing more and more neurodivergent children. And I just wonder why is it, you know, I can't work out whether it's under-recognized or there's a bigger prevalence of it now. And I've yet to find an answer to the question. So my search takes me to you two guys. So, unfortunately, I'm not going to give you a complete answer here, but hopefully at least a few potential thoughts on the subject. I think the first thing is that really until the last few years, pain's been very, very misunderstood within an autistic population. There's been a lot of assumptions that autistic people don't feel pain. And there are some very colourful anecdotes to sort of demonstrate that, you know, children that would play in the snow with no clothes on is a classic one I think we see in older literatures. I think the reasons potentially that we're seeing more autistic people in certainly in pain services is that I think there's some good evidence to suggest that there may be some of the genetics associated with being an autistic person that makes someone more vulnerable to gastrointestinal problems or joint hope and hypermobility. So I think there's potentially a slight risk kind of there. But I think a big part of it also potentially comes down to the challenges that communicating in a way that is not the dominant communicative model, even amongst a verbal autistic population, may not use the same metaphors as their non-autistic peers. That mean that particularly when we're often seeing very stretched healthcare services in especially primary care, that some of these signs are just being missed. Individuals are struggling to kind of come forward and get preventative care early on. And for that reason, we're then starting to see them escalating through services. I think also within a wider kind of neurodiverse population, we know there's a huge co-occurring set of mental health problems, especially kind of anxiety and depression. And we know that those kind of affective challenges, especially in young people, are a big risk factor for pain when it occurs, going on to become more of an ongoing problem rather than a sort of a brief experience that goes away. So I think there's a lot of reasons. And at the moment, I wouldn't like to say how much contribution each one makes to why we're seeing so many autistic young people, particularly in chronic pain services. And one of the questions that we have, of course, is, is it occurring more frequently or do we just recognize it better? Where do you stand on that? So, I mean, I would say, I think that we are getting better at recognizing autism more generally. I think that's something which we're getting a lot better at. I think we're also starting, as people are seeing this and starting to look for it, there's less of a challenge with diagnostic overshadowing, which I think has probably been an issue in the past. If we think about a fairly kind of classic autism presentation, it's often individuals who have slightly smaller kind of social nets might have processed cognitive information somewhat differently. And these are some of the things that we see amongst particularly young people in schools starting to become socially withdrawn, struggle to pay attention in class. So I think there's a challenge when you start to see things looking quite similar to each other, but if you've got an existing autism diagnosis, then people are reluctant to look for pain because you can explain things using autism. And if you have an existing pain diagnosis, then struggling socially and interacting differently socially can really easily be explained by the pain without having to look for any kind of neurodiversity. I think as we're becoming ethnicized, I think as we're becoming better at spotting both of these together, people are just asking that question and finding an affirmative answer more often. I think as well, there's a lot of support groups available now as well in the media. There's lots of people having these discussions on Twitter, particularly around things like hypermobility, Ehlers-Danlos syndrome. And so I think people are just being more aware now of what their actual sensations and experiences are as well, particularly in the autistic population that we're able now to kind of think, oh, you're saying you are increasingly bendy, for example, I have that same experience and I also feel these sensations. So maybe I should inquire if I have this diagnosis as well. And if the pain I'm experiencing is consequential to this, I think we're just able to have more open discussions in the light of social media nowadays. So that's good. Absolutely. Sorry, Bethany, I was going to ask, I'm not trying to pry into your medical history here, but in your lived experience with this, do you find that healthcare professionals are more attuned? No. I think it's difficult to say from my own perspective. I think in my experiences with healthcare providers, I typically have an advocate with me. I never go in alone. So usually I have someone who buffers. So I'm not sure if people are understanding my communication as an autistic person to understand my experiences of pain more so than understanding my neurotypical advocate's neurotypical way of communicating to which is more attuned with how perhaps healthcare providers have been taught to recognise pain in the general population. So I think it's very difficult to kind of break down. For me, the healthcare providers and healthcare experiences in terms of accessing pain have been most successful in terms of being attuned when the individual has taken the time to know me and know my experiences and be open and honest with me. They've tended to be more attuned with my feelings then. And do you think that, you know, taking the time to get to know someone is often difficult in a healthcare environment, not just because of the pressure that everybody is under and the time limits that we get constrained with. So is there something that you see then about consistency and time that makes it better, you know, and not just time as in having 20 minutes more in one consultation, but time as in you need to see the same people again and again, and it helps build up a relationship, etc. Yeah, I think there's two approaches here. I think definitely having the same healthcare provider where you can build that rapport and relationship with is beneficial. However, I think there's also an element where we can be mindful of our time and what we're allocating this time to. So, for example, asking an autistic person at the start of a medical appointment a little bit about themselves, what are they seeing in the world, you know, have they got a special interest that they've engaged with this week, what they want to speak about. So you can build rapport really quickly in that manner with this population. I mean, at the start of this interview, for me, Disney World is a special interest of mine. So to be able to even have two minutes to speak about that, such rapport from the get go. So just taking the time to understand the individual in a mindful way, I think is very beneficial. That's lovely to hear, and that's really nice to hear. I think there's a real relevance kind of looking at this topic at the moment that some clinicians throughout healthcare systems, both in the UK and internationally, I think, are doing an amazing job of training themselves, of becoming kind of experts of understanding these needs. So I think we're seeing a bit of a kind of clinician lottery for a lot of neurodivergent kind of people where if you get somebody who's made the effort or who's had the time to go and understand different modes of communication, who's sort of working in that kind of system, often the experience can be quite positive. Equally, if you have somebody who unfortunately maybe isn't doing that kind of side of the CPD, then it can be a bit more of a challenge for a lot of neurodivergent patients who maybe don't feel particularly well seen or understood. Bethany, I'm very sorry to focus on your personal experiences, but it will be really interesting to hear a little bit more about how you as an autistic person process pain and how you feel it might be different from people who are not on the autistic spectrum. Yes, so for me, I think my difficulties in terms of processing pain initially begin with even recognising the sensation. I typically rely on other people to help me understand why I'm feeling a certain way and this isn't something that's unique just to pain. I struggle with recognising my emotions. I typically will say, oh, I feel a bit weird today and I'll need like my mum, for example, or my husband to say, well, this happened, so maybe that means that you're feeling increasingly anxious. You, you know, twisted your ankle earlier, maybe that's why you're feeling a bit rubbish, like, you know, you can't put pressure on your ankle, you're like, there's actually pain there. So for me, there's a lot of scaffolding in terms of processing of pain, but I also find that once pain is there and I recognise it's there, it's really difficult for me to not focus on it and not to kind of catastrophise. In the same instance, it's very easy for me to overlook pain when I am hyper-focused on a task and again, that is something that isn't unique to pain. I do that very much so where I'll be working and then all of a sudden it's dark outside and I think, I've not had a drink all day, I've got a headache now. Yeah, so I think for me, there's a lot of things that I need to be able to, first of all, recognise the pain, attend to pain and then perhaps distract from pain. Bethany, could I just sort of ask, if you say you did do something like sprain your ankle and it hurt and with the understanding of the scaffolding that you've just described, you process that and you understand that that's what you're experiencing, but then the next day and the day after and the day after and the day after, how does that process in your mind? Because I think that's, in some ways, I try to understand the child who I do see who has pain, chronic pain, the definition of chronic pain is pain for three months or more, so they have pain, that long-term pain. I suppose once I'm saying, I don't really know what I'm saying in some ways, but I try to work out what you feel every day when you've got pain, how you then process the fact I have this pain. I'll be honest, I've never really contextualised it in a way to think about it daily. So for me, something that I get a lot are migraines, unsurprising with sensory demands of the environment and how we see that overlap with migraines. So for me, I'm constantly thinking in terms of how to mediate getting a migraine. I have to almost put things in place because I know that once I recognise the pain's there and once I process it, it's harder for me to do other things. So in the context of finishing up my PhD at the minute, I might take some medication because I think, right, there's a little twinge here. If I don't do something now, I'm then going to be out for the week and I can't do anything with my day. It's going to have a long-term effect in terms of my ability to do things. So that's kind of where my processing is in that instance. It's more the knock-on effect it will have in terms of my ability to do things. So I'm constantly thinking, what can I do to stop that from happening? Which brings me on to something we were probably going to ask in a while, but I'm going to ask it now if that's okay, because it comes down to me as the clinician then thinking about how do I treat you? How do I put in place the strategies to help you going forward? Because understanding that you process it like that is really important, obviously, but it's quite different to the way I would think that someone was processing it, if that makes sense. So what do you then want to hear from me as a clinician to help you? I mean, for me, going to a clinician personally, if it was me, it's obviously subjective for each autistic individual. But for me personally, when I am going to see someone, my need is very much to stop my pain. So it's something I've spoken about with my mum, for example, my husband, is that my thought process by engaging with treatment is that I believe that you should be able to just rid of this feeling that coming to you will be the end of it and I will not have to deal with, for example, migraines again. So I think a communication of, for example, we might not be able to completely stop what you're feeling, but we might be able to put things in place to make things easier for you to do. So easier for you to engage with schoolwork in the long run. I think for me, that would be easier. However, I think there needs to be something for me personally in place to moderate the emotional aspect, because if someone was saying to me, we can't just get rid of the sensation, I'd feel like, well, you're meant to be the professional, you're meant to be the specialist who's meant to stop this. And if you can't do that, then what's that going to mean for me? What's this going to mean for my future? So I think there needs to be a kind of element to regulate emotion as well and recognition that you might feel that way. And what, you know, sorry, this might sound like a really ignorant question, but what would you want to be put in place to help you regulate something emotionally? What would that look like? So for me, I would want there to be a conversation with whoever is with me in that room at the moment. So whoever's there to help me scaffold my communication. If anything, I'd need them to know the processes to help me manage my emotions, because in that moment, perhaps it'd be a bit more difficult for me to grasp. So I need someone else to be able to have the knowledge that when I leave that room, they can explain to me what has been said, they can explain it again in a means that is accessible to me, and that they know how to support me in managing my emotions. It's not all on myself that I have someone else that if something gets a bit difficult, I can go and speak to them and get the help I need with that. For me, it's very much so a collective experience with someone that I trust and someone that I know is able to help me with just managing feelings in general, not just pain. That's really interesting. That's really interesting. Glyn, do you mind if I give you a ring on WhatsApp? And I can see you face to face on WhatsApp because your image often freezes and I find myself talking over you and you talking over me and that's partly because we don't see each other. Yes, sure. So I can see you a bit better now, hopefully. And that will help us hopefully. You may have noticed I'm talking over you a bit. Well, it hasn't been too bad, I've got a few minutes. That's really, really interesting, Bethany. I'm so sorry. I hope you don't mind that we're focusing a little bit on you in terms of your personal experiences. Is that okay for you? Is that okay for you? Yeah, that's fine with me. I'm happy to share. I'd just be very, in my answers, that obviously this is my experience. I wouldn't want to speak for the whole community. I'm very, yeah, I'm very open with the fact, not open, but I like to emphasise that speaking to an autistic person or speaking to one autistic person, my experiences won't but I'm happy if they will help some understanding. Yeah, okay, that's helpful. Glyn, I can't quite see you on WhatsApp. Yeah, great. All right, Bethany, I've just got to say thank you. You won't believe how useful, you know, outside of this podcast, this bit won't go in the podcast, don't worry, but outside of this podcast, how useful it is for me to be able to talk to someone like you. As a clinician to work, so, you know, but please, at any point, if you think I'm asking a question that's inappropriate, just say. I'm sure you won't. I'm very, I'm very open with that sort of thing, don't worry. Well, Bethany, what's quite interesting is that what you described just now is what some people call maybe black and white thinking. And that is and sometimes that can sound a little bit dismissively, if that makes sense. And that's kind of either you fix the pain, or you can't. And if you can't fix it, what am I doing here? Yeah. Is that correct? Yeah, I would describe for me it being very black and white thinking. I'd try and think of a different approach to explain than that. But for lack of my awareness at this moment, I think that's the only thing I can grasp on. But yeah, I think I am very in the sense that if you're setting out to do something, do it or don't, if that makes sense. Like if I need relief, I want to access relief. If I can't access relief, then what's the point of me engaging here? And I guess the difficulty that clinicians then potentially have is that many of the solutions that are provided are not necessarily very clear, or very black and white, or they might, you know, enter a grey zone. And how might that come across? In my experience, or in the broader perspective? In your experience, as well as the broader perspective, I guess. So I think for me, if I was to think about if a clinician was to say it's more solution focused, as opposed to getting rid as an approach, I think again, I'd need that and management in terms of processing what that would mean, and managing the emotional aspect that comes along with it. I think that can be very disheartening. If you're in a lot of pain, as a lot of autistic people are, and the only thing you need out of it is to have some sort of relief to be told, you know, we might not actually be able to reach that, but we might mediate all the things I think, at that point, there's a higher drive for emotional management. Don't know if you have any extra to add, Dave? I think, as far as chronic pain management, and I'm not a clinician and have not engaged in that, but I think what we are, what we're starting to see a lot is that anything that can steer into the strengths that either the autistic community, or particularly an autistic person might have, is going to always be a stronger part of that approach. So, I think thinking maybe if, say, physiotherapy is something that a person's being asked to do, if that's left very open as kind of like, you should do this at some point, that's not very well structured, it's not very easy to engage in. But if you spend a bit of time with that person and have that conversation about, okay, so what does your routine look like? When's a good time to do that? And then, you know, what does your routine look like? When's a good time for us to kind of say your physiotherapy might fit? And actually, because a lot of autistic people really do like to have that routine, if that can be built into, you know, I get home from school, I, you know, I spend half an hour doing this, I do this, and then I have a 20-minute period before dinner, and that's when I do my physiotherapy, I think a lot of people then, it becomes maybe more so than for a lot of adolescents. I mean, this may be speaking from my experience as a non-autistic adolescent, trying to do anything was, you know, I was very lazy and not very good at doing a whole host of things. But if that can be in that kind of routine, I think it's also about the other kind of big thing we're seeing, and I think particularly around some of these kind of challenges about emotional regulation are either giving, well, A, giving people information to take away and reread and process in their own time. I think there's always a challenge that a therapeutic setting is a fundamentally odd social interaction to have, especially if you're an adolescent talking to an adult who's kind of telling you that they can't do these things that you want them to do. Having that time for someone to maybe process that away from that setting in a place that feels safer to them is going to be a real strength. And I think the other thing, in the same way as we talk about kind of co-creating our research, what we're finding with a lot of this is that if we can have, rather than it being a situation of, as a clinician, you're saying, look, you know, we can't offer you this that you really want, what can offer you is over here, is I think having those conversations about, you know, what goals, what would be a good outcome for you in this situation? And I think that's a part of a lot of therapeutic processes is that conversation about, you know, what does a good outcome look like? You know, what are the important activities in your life? And trying to target those potentially then feel more meaningful. And I think that that person also then sees themselves more in that outcome. It's personalized, it's individualized, and that's always going to be a hopefully a more positive thing. I think we've lost Conrad. I would have been so yeah. If it's all right, I'll just carry on and I'll ask the next question, and hopefully he'll come back in. So can I just ask on the background, and again, I think this might sound like a bit of a stupid question, because I sort of think I know what you're going to say. But if we think about what you've both eloquently put forward so far, how do you feel about group work for neurodivergent young people? You know, because I understand exactly what you're saying, you know, they're not all the same, everyone is an individual. And so I can imagine that it might be that yes, it's good for some and not good for others that very much depend on the individual, but it would just be interesting to see what you both think. I mean, I think my thought is that, and certainly with some of the work we've done, a lot of autistic young people can feel doubly different. You know, they're autistic, and therefore they don't necessarily feel like they belong within that kind of chronic pain community, but they're also have chronic pain, and therefore that's a part of feeling separate from maybe some of the wider autism community. Um, I think as far as group work goes, I think where that can be facilitated, where that space can be made to feel safe, where an honest account of, you know, that person's experience can be shared, and where they feel valued. You know, I've certainly found working with a lot of autistic um, people, both in terms of PhD students, other students, and people on our kind of PPI and co-creation panels, if the space is safe in a group of autistic people will, you know, will share all manner of details magnificently and eloquently. If the space doesn't feel safe, or if it feels like somewhere that there'll be judgment, then I think all of us feel less inclined to come forward. For a lot of autistic people, it may be not feeling less inclined to come forward, and remaining completely silent, and once that trust is broken, I think it's very, very hard to rebuild. Okay. And then could we, just moving on slightly, you both obviously have worked a lot with young people with pain and autistic, and your presentation, but could I just ask you both for one research area which you think needs more study? I mean, I think when we consider researching to improve autistic people's outcomes in terms of pain, we need to really get the research correct from a get-go. So I think it's really speaking to autistic people about what they feel is important to look at in terms of their pain. It's all well and good or saying, well, the literature says this, that this is an area we need to consider, but if these aren't coming from autistic people, if these aren't autistic voices, how do we know if they're going to actually do anything? So really for me, we need to be speaking to autistic people through, as Dave's explained, co-creation to understand what is important, what we need to consider, and really where we can improve the treatment they receive. So would you sort of be very much in favour of every research project that's set up, you know, has a lot of lived experience? Oh, I think it's paramount. I think at this point, especially with autistic people, if you're not involved in autistic voices, you're really doing a disservice to them and the population. But in a way, right, you know, from, I mean, co-creation you've talked about, but from the idea of really taking the questions from you guys, if you, I'm sorry, that sounded awful. That wasn't meant to be an exclusive term, but I mean, you know, because I can sit in my office and think of a million questions that I might want to ask. But I suppose what you're saying is I should come to you and ask you what you think you are the questions that I should be asking. Yeah. And to be honest, it's very likely that the questions you have in mind, maybe the questions that autistic people want to answer or to be asked, it's just about getting that confirmation to make sure that where you're putting the time is beneficial. And at the end of the day, research costs, we're always thinking about cost benefit. If someone's paying to do this, you want to make sure you're doing it right and you're doing it for, again, the right reasons. So involving autistic people, I think is very important. And I think within that, even where the questions might be, the underlying question might be the same. I think small changes in language can often really change how people interact. If a question is framed within what an autistic person can't do, then often that starts on the back foot, whereas if it's a question around how a system may not be optimized for that person or how a person may kind of find those particular challenges within a therapeutic journey, then those questions can invite conversation a lot more. I'd also say just to try that, I think the other kind of big question at the moment, which maybe isn't one around the direct treatment or management, what I'd really like to see is a much better understanding of where autistic people are accessing the healthcare system and probably the harder question, not accessing the healthcare system before they end up in tertiary pain services, so that hopefully we can engage in some good preventative medicine, trying to work out how we can better set up those healthcare pathways and turn the pain experience of those people away before we look at that kind of three-month pain and a chronic experience. I think that's absolutely right. I would like to see that across the whole spectrum of everybody. If we could do far more prevention, we would be doing so well. I'll just stop this bit here. I just need to check. Comrade, I can see him on my WhatsApp, but I don't know where he is, so if you'll just excuse me for one minute. By all means, by all means, don't worry. I'm just going to see if I can actually speak to him. Can you hear me now? I can hear you. The internet connection is absolutely crap, and I can't get back in. I've been trying to get back in. Okay. I just wanted to make sure, because you're the host, we haven't stopped recording, have we? I've just checked, and apparently, what it told me was that it's still recording. Okay, because it seems to me I've got a red dot flashing on my screen, so I think it's still recording. So that's still fine. Yeah. Okay. Let me just quickly check something. Was it to save David and Bethany too much more? Actual recording quality is higher. I seem to be back. Hold on. It just started at zero again. I'm not sure what to do with it. Do we think it's because if it's still recording, I mean, I can finish off. Mine still says that 99% upload and in the corner. I mean, I've got that as well. By your names, David and Bethany, I've got a little red dot that's flashing, so I assume that means it's still recording. Okay. I'll tell you what, because Conrad is trying something else, but shall I continue with you? Is that all right? I'm very aware of how much time we've taken for something that was only meant to be half an hour. Okay. So David, last year you compared, or not last year, recently you published a paper comparing QST or looking at QST responses in people with and without autism. So I just wondered if you'd like to talk through your findings with us. So I mean, I'll certainly have to talk about that, but I'll also introduce that Bethany's kind of replicating some of that data at the moment with children. So we've now got that data with adults and in preparation with children. That's brilliant. I think really the shortest version of an answer to that is that overall, comparing an autistic to a non-autistic population, there aren't systematic differences in pain thresholds for those two groups. I think that would be the big take home. So I would say that the kind of the neural architecture that communicates from the periphery to the brain about pain seems to be. Yeah, yeah, sorry, Conrad. We've got Glyn fine on audio. Yeah. Can you hear me? I can. I think, Conrad, we can all hear you through the Riverside thing. OK. Yeah. Yeah, we were just, if it's all right, Conrad, we were just carrying on. Yeah. So, yeah. So, sure. I've got 49 minutes and 12 seconds. OK. Yeah, that's good. They could hear you as well, Conrad. Yeah, no, no, it's just to let you know they were hearing what you were asking. Yeah. Don't worry. We haven't got much longer to go anyway, Conrad, so I'll happily finish up. Just pretend that I was being narcissistic and wanted to talk through this. We're getting there. Yeah. You know what, I'm going to leave it running on my side, if that's OK. Yeah, sure. I don't want anything to go wrong. Sure. OK. OK. Good luck. Thanks. All right. So, David, sorry. Am I best to pick that up from the beginning again? Yeah, yeah, yeah, go on. Will that be an easier edit? So, I'm happy to talk about the QST data that we published a few years ago, but I'd just like to say that Bethany's actually, through her PhD, in the process of replicating that study with autistic children, and we're getting a very consistent experience both for autistic children and adults here. And really, that's to say that if we compare a group of autistic people to a group of non-autistic peers, they both have the same pain thresholds as each other. So there's no systematic evidence that an autistic population is different in terms of their pain threshold to a non-autistic population. If we go a little bit more into depth there, we are more likely to see individual autistic people who have more extreme thresholds, so who fall outside of what we might statistically think of as a normal range. So it may be that for some autistic people, there's a greater likelihood of them either having a very high pain threshold and not experiencing pain, or a very low pain threshold and feeling pain in response to more, you know, minor injuries than we might see in an autistic population. But overall, autistic people feel pain in a pretty similar way to their non-autistic peers from a purely sensory point of view. But the ones who you found that lie outside, or the outliers maybe, can you recognise a pattern as to those children and where they might present on a, in an autistic, you know, and I know, again, if I muck up my language here, but if they, you know, the patterns of autism or the neurodivergency that they might present with, do you recognise a correlation between that and some of the ones who are, you know, who you are saying are outliers? I think the really short answer is that the sample sizes for the data that we have at the moment, both within our own group, but also if we look at the kind of colleagues who've done similar work elsewhere, is that no, there's no clear evidence for a sub-population of autistic people that they're going to be phenotyped as being at high risk of pain or feeling that kind of differently. That's not to say that that doesn't exist, but the numbers that we're looking at at the moment are just too small to talk about meaningfully in that way. I think what is relevant here is that generally overall in our studies that we've looked at, our autistic populations have been much higher in terms of pain anxiety and fear of pain. So, there's a very high level of pain affect experienced within this population that again may be a part of that kind of risk that when pain is felt, the emotional experience of that is more acute. And Bethany, have you found a similar thing when you've been looking at this in children? Yes, so in the QST study that I was conducting, which Dave spoke about, we aren't seeing any differences in terms of a hyper or hypersensitivity to pain. However, interestingly, there might be something in terms of how highly an autistic child rates their pain. We're tending to see, particularly on cold pain measures, that autistic children are rating their pain significantly higher than their non-autistic peers. Why? Again, we don't know at this point. I think it's something that we do need to explore. However, if we kind of move on to types of research and literature that is available, my perspective would be that there is likely something in terms of their own processing and appraisal of their pain. However, there could also be a social reflection, in my opinion, to which autistic people have often had their pain overlooked. Or there's many anecdotes in terms of autistic people saying that healthcare providers aren't believing the intensity of the pain. So is this a conflation in terms of the, an inflation, sorry, in terms of their intensity where they're over emphasizing how much the pain they are feeling to be heard? I don't know. But I think for me personally, we need to be looking at the social aspect as well. I think that's something that we often overlook, especially it's very ironic considering autism is deemed as a social communicative condition. And have you noticed any, is there any sort of impact of age on what you're doing? In terms, you know, because obviously across childhood, you know, there's a lot of development going on in a very short space of time. In my study, I would not be confident to say because our age range was limited to 11 to 16 year olds. So we were predominantly looking at an adolescent population. If this differs in younger children, older children. So if we're looking more, well, older children, older adolescents looking more at the kind of 19 age bracket, I would not be aware to be quite frank. I think it's something we need to consider more. And I think the evidence we have available at the moment in terms of QST measures in the autistic population still remain very understudied. There's not a lot that we can kind of go on. And I think, yeah, we need to do more to improve that evidence base. Now, Bethany, you've published quite a lot recently and one of your patient, one of your papers, sorry, is about understanding the impacts of chronic pain on autistic adolescents and the efficacy of pain management. And I'd just be grateful if you could talk us through your findings from that one. Yeah, so this piece of research was led by Abi Jordan. And it was pretty much the first interview study to kind of consider chronic pain management in autistic adolescents. We actually see here that autistic adolescents already enter the pain services very overwhelmed. They recall that these feelings of overwhelm and anxiety only are exacerbated further by things such as the sensory environment. So having to additionally process everything going around, the bright lights, the loud noises in a hostile setting becomes increasingly difficult when you're already trying to manage the fact you're feeling rubbish as it is essentially. And there were also reports that they felt as though healthcare providers didn't understand their expressions of pain. So one child was speaking about the fact they laugh in response to pain and healthcare providers don't really understand why they don't recognize that as a true reflection of pain. But interestingly here as well is that autistic adolescents actually report feeling a sense of difference from non-autistic peers who are also experiencing chronic pain. So there's something here in terms of appraising autistic pain experience that I think is really important to limit this inequity between the two groups and really improving the treatment that autistic people receive. So knowing that, you know, if we could make changes to the way that we interact with young people, whether it be, you know, through our communication or through our, you know, just face-to-face interaction. But even in terms of changing the environment, the infrastructure that we have, what do you think would be good things to do? So I always say that we need to create inclusive adaptations for the individual in front of us. Again, one autistic person is one autistic person. I think it's important to understand what that individual needs because their adaptations might be different from another autistic person. So I think as a kind of foreground, that is what we need to do from the get-go. However, on a wider perspective, there are some approaches that we can implement in terms of individualizing information to validate autistic people's pain experiences and understanding how they express pain instead of bringing in all kinds of neurotypical perspectives that we so often attribute to a neurodivergent population where, you know, we're constantly saying about these differences between autistic and non-autistic people. Yet when it comes to understanding pain expression, we ascribe a neurotypical understanding. When you say it in that kind of instance, it doesn't make sense. So we need to be learning about autistic representation. And I mean, from my own interviews from my PhD, I think another very important experience is that a lot of the parents that I spoke to and the children spoke about needing an anchor, a pain anchor. So they needed to be able to talk about their current pain in the context of a past pain. So it was easier for them to say, for example, a migraine. My migraine hurts worse than when I broke my arm. So if you can understand what their past experiences are, it makes it easier to understand their current experience of pain. And you talk about, you know, it being a difficult environment for them to be in. I mean, do you think the hospital is the right place for us to be seen? I think it's difficult to say, to be honest, I think. Yeah, I think it's hard to say. I think there's things we can do to make hospitals more sensory friendly for autistic people. And however, in terms of if it's the best place to be seen, I don't know. I think it's difficult to say. I mean, I think within that, you know, there's definitely there's obviously always a convenience of the hospital as a therapeutic location and there's other people nearby. One of the big things I think which we see time and time again is that adaptations made for neurodivergent populations are often quite popular with non-neurodivergent populations as well in the kind of wider community. So I don't think there are many people that think that fluorescent lights are the most enjoyable or flattering sort of lights to sit under. And I don't think there are also many people that kind of find the smell of bleach that is quite often very important to keep a hospital a clean and sanitary kind of location. But it's maybe not the nicest thing when you're trying to focus on your current emotional experience and your pain feelings. So I think trying to look at how to make these tertiary services where hopefully somebody is not going to suddenly need life-saving, imminent medicine, a more pleasurable environment to be in is probably not going to be a bad thing for any patients. No, I 100% agree with you. It's amazing how difficult it is, though. We're going through a process at the moment of trying to refashion part of our pain management area where we see patients. And the restrictions that they've put on you are just crippling, really. And they're all the things that we can do are all the things that you are describing are the things that, I mean, as you say, they're not pleasant to anybody, but they're not going to help. I think the other thing just to say is that as much as there are physical and architectural challenges that might be more pronounced within the autistic population, I think the other thing that is a challenge that the population is more likely to be facing is that this is less likely to be their first experience of a long set of medical and psychological investigations, which may or may not have been particularly satisfactory, especially where we look at young autistic women or gender non-binary populations, where the time it takes to go through being on a waiting list for an autism assessment, often being misdiagnosed, whether it's with personality disorders or eating disorders ahead of time, that might mean that although the pain clinician in front of them in their adolescence, you know, is genuinely, has their best interests at heart and is genuinely trying their best to help that, which we would hope would be the implicit trust we have for our doctor who, you know, we think that they are there to help us, that trust may have been eroded by having spent often years being misdiagnosed, misunderstood, and I think that there's a real challenge again around that building. I think the one thing we see consistently across all of our studies is building that relationship of trust is paramount for getting the best outcomes. And again, I think you're, I mean, 100% correct, but I think you're 100% correct across the whole of the population that we see as well. I would agree it's heightened maybe in certain situations, but, you know, we're often starting with a lot of young people who are coming in and have had a very difficult journey before they get to us. Yeah. Both of you, thank you ever so much. You've been really generous with your time and generous with your knowledge and your experience. But just before you go, we always ask people this at the end, and David, I'll start with you and then Bethany, but what do you enjoy about working with pain? I think it's a really difficult question. I think pain's a question where it's really hard to answer, the sort of what do you enjoy about it? I think the thing that gives me a real sense of purpose with it is that even in quite a short time, we're starting to see a much better understanding for this population. And I'm becoming increasingly optimistic that we will hopefully kind of get these specialist services, this kind of greater level of understanding within the pain community, and hopefully that, you know, my goal is that there should be no person that suffers unnecessarily, but more immediately with this research is that we can engage in a process where an autistic person is not needlessly suffering because we just don't understand or we haven't got the tools to support their pain. So, I think I get a real sense of purpose for this. And the partners, whether they're our PhD students or whether they're our patient partners are a very fun group of people to spend time with. Bethany? I think for me, particularly working in pain and autism, I feel very grateful to be part of the change that's happening. I feel very privileged to be able to speak to autistic young people and, you know, hear their experiences, but be able to do something with that, be able to elevate their voices. And I always think not to infantilize the young people that I speak to, but I think interacting with them and seeing how much they are willing to put a part of themselves into research to actually make a difference, I just think is amazing. So, to be able to interact with these people, be part of the change and fundamentally elevate voices to address the health inequity, I think it's just an amazing thing to be a part of. And I feel very grateful. Thank you both. And we're obviously very grateful you are a part of this world. But as I said, you've been unbelievably generous with your time. And it's been lovely to meet you both. And I know from Conrad, I'll say goodbye as well. But thank you and hopefully speak to you soon. Thank you very much. Thank you very much. It's been a pleasure talking to you. Now, guys, what I've got to do now is I'm going to try and press this button on here. It's not going to let me, is it? No. So, have you both got 99% uploading on your? Yeah. Yeah. So, if we... So, what I haven't seen is anything on the recording time that yourself and Conrad were talking about earlier. Yeah, I've not seen that. Oh, excuse me. Because mine's up on the way I'm looking at it. It's on my right-hand side where it says people. And then it's got me and two others underneath that. And then I've got a clock. Yeah. So, anyway, what... Oh, yes, I do see the clock. Mine says one hour, eight minutes. If you click people in the bottom right corner, Dave, and then it'll say you and two others, and there'll be a value next to that. Ah, so there is. Yeah. So, what usually happens is that after we've finished, we stop the recording and then the thing uploads. And then we're not meant to actually leave the studio until the whole thing's uploaded, because we did that once and we lost the whole recording. But if it's saying 99% uploaded and now we've chatted for a little bit after we've actually finished what we were talking about, I think we will be safe. Sure. As long as it's saying 99% for both of you two. Yeah. So we should be good. So, look, guys, I can only apologize again for the numptious way. And I'm sorry I wasted your time on Tuesday. And I'm sorry I've wasted a bit of your time today. But it's been great. Thank you. It's fine. I mean, we really appreciate the opportunity to share this work with the pain community as well. I think it's obviously going to be a really important thing to have clinicians and other researchers on as partners and bringing in all their kind of experience and knowledge. So the opportunity to kind of talk on here is lovely. I mean, for us, it's unbelievable. From the pain community's point of view, it's unbelievably important. Because if there's a big change that's happened in most of our working lifetimes, this is it. And so to understand more about it is priceless. Yeah. And I think for me, you know, maybe it's a partial answer to that last question as well is one of the things I think has kept me in pain research over the 15 years with lots of kind of changes along the way is that I feel like unlike some of the other research communities I've been a part of is that it's a community where people are flexible to new ideas and new approaches. And if there's a problem that's facing the treatment of a patient group, then people seem to actually really get mobilized surprisingly quickly to try and address that, which, you know, there are certainly other areas of science where it feels like people are so determined to hold on to their theory, because it's what they got their professorship for. But there's no real progress. Absolutely. But I also think from our point of view, as a clinician's point of view, I need that help. Because my life has changed so dramatically in some ways that you need that. You need to understand that. Especially, I don't know if you know, I'm an anaesthetist by training as well. I'm not a pediatrician. So this is something I certainly never did in my anaesthetic training. So all this learning that I can do is really good. That's fantastic. But anyway, guys, please go off and enjoy your evenings. And if you've missed your suppers, please apologize to your families as well. It's all fine. I'll go and take the dog for his walk. I'll apologize to him or her as well. I'm sure he'll be more than happy. He'll be having lots of cuddles with, we've got an eight week old baby downstairs. So he'll be having lots of cuddles with my wife and the baby. He'll mostly just be grumpy, but I'm going to force him to be grumpy. And this is Glasgow, of course, pretty much. Swear through the truth, that may be my only saving grace at this stage. All right. Well, look, I hope to talk to you again soon. Thank you. Likewise. Thank you. Bye.