The Middletown Centre for Autism Podcast
Pain in Autistic Children and Young People with Bethany Donaghy
In this episode, we’re joined by Bethany Donaghy, an autistic researcher focused on understanding the experience of pain in autistic young people. She talks about the importance of challenging assumptions so we can better understand autistic children’s experience and expression of pain. She also chats about how being autistic has shaped how she conducts her research.
In this episode, we’re joined by Bethany Donaghy, an autistic researcher focused on understanding the experience of pain in autistic young people. She talks about the importance of challenging assumptions so we can better understand autistic children’s experience and expression of pain. She also chats about how being autistic has shaped how she conducts her research.
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode, I chat to Bethany Domagey, an autistic researcher who's researching pain and pain expression in autistic children. I was fascinated to learn about the misconceptions around pain in autistic people and how we can better support autistic children by understanding their experiences of pain. I was also keen to hear about how being an autistic researcher has informed the good practice that Bethany brings to her work. I think all researchers could learn a lot from what she's doing. Take a listen, bethany. Thank you so much for chatting to me on the podcast. Um and bethany, thank you so much for chatting to me on the podcast and I want to start by asking you what caused you to to study the topic of pain management in autistic young people so originally I kind of fell into it, to be entirely honest.
Speaker 2:Um, so my supervisor has historically done absolutely amazing work looking at pain in autistic people and when I received my autism diagnosis I kind of started looking a bit more into what he was doing and having more chats about autism and pain and it occurred to me that there's such a high prevalence of pain amongst autistic children and young people but we don't understand why.
Speaker 2:And that's kind of been the thing for ages, like as long as we go back and research, as we still don't know why.
Speaker 2:And I began to reflect on my own experiences of healthcare and how difficult that was for me and needing someone to constantly advocate for me. And it particularly became evident when I swapped GPs and it was rebuilding this relationship to be able to express and disclose swapped GPs and it was rebuilding this relationship to be able to express and disclose how I was feeling. It was such a struggle. So I was really thinking is there something here around our understanding of pain and autism that we need to kind of address? We need to increase this understanding so we can gain training and really begin to address this health inequity, because we don't understand is the kind of forefront of it and that in itself is such a negative thing with the impact it has on an autistic child's life, and so essentially that roundabout way is what brought me to it. I fell into it, learned more about it and thought something needs to be done I'm I'm very glad that you're doing it.
Speaker 1:I think pretty much every autistic person listening will relate to some sort of difference in how their pain is understood or how they're responded to in healthcare settings. So, yeah, I think it's so important, the research that you're doing, and are there kind of historic misconceptions around autism and pain?
Speaker 2:yeah, so typically people tend to think autistic people have this indifference to pain, that autistic people don't experience pain. We don't feel pain, we don't have the same level of understanding of pain, which is very ironic given the high prevalence of pain in the autistic community, and it's a absolutely biased perspective on their front. And so I think, yeah, it's this understanding that people have applied, that autistic people don't experience pain, and I think it lends a lot to the behaviors that we ascribe to understanding pain, the description that we expect from a neurotypical understanding to be provided about pain, and when perhaps neurodivergence displays don't mirror this neurotypical perspective, we tend to reinforce this misconception that autistic people aren't experiencing pain, despite knowing full well they definitely do it's fascinating isn't it I mean it's disturbing, but it's also fascinating yeah, and I think it.
Speaker 2:It falls a lot on as a society. A lot of our understanding and research has been rooted in neurotypical research and basis and um, even looking at intersectionality, does not a big intersect in terms of pain research anyway? Um, but we continue to ascribe this neurotypical understanding and it's not great we. We consistently say well, well, not we. The DSM particularly consistently states how autistic people may socialise differently, they may have different displays of behaviour, but yet we still think this neurotypical understanding is still best to ascribe to neurodivergent people. It just doesn't make sense.
Speaker 1:It really doesn't, um? And is there a long-term impact for autistic children if their pain isn't sort of understood or recognized?
Speaker 2:absolutely. I mean from a kind of pain standpoint. Um, we know that having persistent pain can cause wider effects to things like um health, so increasing anxiety and depression. We know that it can make things more difficult in terms of socialising, it can make sleep more difficult, so that in itself will worsen.
Speaker 2:With this increased pain perspective, however, I think an interesting intersect that is very unique to the neurodivergent population, particularly autistic children, is this aspect of being medically gaslit.
Speaker 2:So if we think a lot of autistic people have to fight for this diagnosis, they have to consistently try and prove their own experiences just to get this label and this label, unfortunately, in society is our gatekeeper to access and support.
Speaker 2:But getting that label can be very traumatic and this kind of feeds into then more trauma in terms of having to consistently go to medical appointments and advocate for your pain.
Speaker 2:When there are these misconceptions and in my own research when I've been speaking to autistic children, it gets to a point where they just say there's no point me even saying anymore because they don't listen, they don't hear me, um, they don't tell me what's going to happen with my pain. So this interest in trying to think of the word, so institutional trauma, is just consistently reinforced and as a child, we learn how to express pain, we learn what behaviors work for expressing pain. But if you've just shut off saying what's the point, your pain is not going to be treated in the long run and it's going to exacerbate your likelihood of developing chronic pain or just persistent pain in adulthood, and which again can further these psychological um concerns around increased anxiety, depression, socializing, work life um. So we really need to be getting it right in childhood to make sure that we give autistic children the best outcomes in adulthood makes a huge amount of sense and you mentioned the sort of gas lighting side of things.
Speaker 1:Are there other barriers that that autistic people face in relation to accessing that health care?
Speaker 2:Yeah, I mean you can look at typical sensory aspects in terms of health care, in terms of lighting, the smells, the unpredictability.
Speaker 2:It can be a very distressing environment anyway, which already increases anxiety thinking about going. So then, when you're actually in a room and having to tell someone how you feel, if you're already anxious, it's increasingly difficult. And, however, again in the interviews, another big barrier for accessing healthcare, particularly speaking to a healthcare provider, is this need for a trusting and familiar relationship, and which makes sense, because if children are constantly being told that they're not experiencing pain, because it doesn't look like this, you need to have someone you trust will actually listen to you and help you, and so I think that's a big facet and we really need to understand how we can build this trust. And on the flip side, it's not me saying that healthcare providers don't build trust and relationships ever, because there are great um healthcare providers out there and I totally appreciate it can be difficult with the healthcare pressures we have at the moment, um, but there's kind of little things that you can put in place to begin to broach creating a relationship and just being a human in healthcare.
Speaker 2:Really, yeah yeah and yeah, and seeing the human across from you as well, yeah absolutely, because it's a very vulnerable thing to be open about the kind of negative things you're experiencing. And again, what's the point? If you're not going to be listened to, then why would you be vulnerable?
Speaker 1:yeah, yeah, that's it exactly, and that I guess that that brings me to something I've been thinking about and sort of the the role that masking plays in relation to pain, because I know for myself, I relatively recently broke my arm and my shoulder and like I went to emergency care and I was like I could not have masked more. I was singing and dancing I could not have been more pleasant. So I sat in the waiting room for hours and it was only then when they x-rayed me. They were like, oh, you should have been back here immediately because it's such a bad break. But but I masked because I was in such so much pain and it was such a difficult circumstance that I masked so highly that nobody thought there was anything wrong with me. So is there a link between pain and masking beyond me?
Speaker 2:absolutely. I think it's kind of a double-edged sword, almost. Um. So typically we perceive masking as a means of fitting into a social, neurotypical world. Um, so you could mask pain for the sense that with this vulnerability it's easier to keep it to yourself. It's hard to express this to other people. So if you can just mask it and make it so you know it doesn't outwardly appear it's it's a means of protecting yourself from the additional trauma that can come with not being believed.
Speaker 2:But interestingly as well, it goes back to, in terms of the children that I was speaking, to levels of pain intensity.
Speaker 2:So a lot of children would just mask their pain and get on with things, and some children spoke about the fact that they'd rather enjoy what they're doing than deal with the fact that there's a negative consequence there. So it's very behaviorally driven in terms of masking for autistic children and I always try and indicate when I'm speaking to people or healthcare providers or whoever, that children are saying that when it gets to a point where they just can't continue anymore, that's when the mask comes down, and that that when it gets to a point where they just can't continue anymore, that's when the mask comes down and that is when it's most indicative that their pain intensity is off the charts. So, really, if we understand how this mask and behavior manifests within the autistic population, we can perhaps use these changes in mask and behavior to understand the intensity of pain. And that might be more useful than perhaps the need for verbal expression, which could be increasingly difficult where there isn't this trust and relationship.
Speaker 1:And you've mentioned the interviews that you've done with autistic young people, and can you tell us a bit more about that?
Speaker 2:Yeah, so in terms of the methodology or the findings, well, both.
Speaker 2:So, essentially, the methods for the interviews involved speaking to autistic children and then speaking to one of the caregivers. The context was essentially to get a dual perspective of how autistic children experience pain daily, experience pain daily, um. So some of the factors that affect this pain experience in terms of emotion, cognition, behavior, um, interception, and how then this manifests in terms of seeking help or what they do afterwards once they've processed that pain's there, um, and when we analyzed it, it kind of came down to four key points that were important to consider in autistic children. So, looking at how they make sense of the feeling, so a lot of the children reported the use of cues to even recognise that pain was present. And, interestingly, there was a highly social aspect to this as well in terms of the caregiver involvement, where the caregiver would provide communicative prompts when they'd recognize changes in their child's demeanor. So they might say typical conversational things when someone's not feeling right, in sense that you might say are you okay, are you doing okay, how are you feeling? Um, but then these communicative prompts from the caregiver transformed into okay. So if this is a negative sensation, what does this negative sensation mean for you? However, they're very clever in the way they ask this, in the sense they'll provide past experiences to provide context for the current experiences. So they might say, does it feel like when you broke your arm? And if they say no, they say okay, so is this experience for you like when you had a tummy ache and you can go to school? So they really contextualize to help process that pain and what that pain means for the child. And so it really clever in terms of the collaboration between the child and the caregiver, in terms of making sense with cues and additional to that, we seen that there are um, as expected, um impacts to emotions, impacts to cognitions, and these impacts to behaviors, as we just discussed, in terms of children just getting on with things until they no longer can. Um.
Speaker 2:We also found that the role of relationships was key and if we think about children, the kind of places they are most likely to be in their lives well, this development stage of their lives is at home, with a caregiver, at school, with a teacher, or they will be going to doctor's appointments for their health the kind of key places we expect to see children amongst this. So disclosure and expression at home was not easy. There was obviously some difficulty there, given the need for these communicative prompts. However, they felt safe at home. They felt like they were able to let this mask down, that they could show that they were experiencing pain. They had a trusting relationship with the caregiver, so it was comfortable for them to do that.
Speaker 2:However, when we looked in the context of school, this need for a trusting and familiar relationship really exacerbated, where children wouldn't even tell a teacher they were in pain because they felt the teacher wouldn't understand. They'd tell them off because they didn't understand. They couldn't do their work, they couldn't focus because of this pain and they just wouldn't believe pain was there to begin with and they might just think they're being lazy and can't be bothered, essentially, um. So there were reports as well of masking behavior there, where children were literally just getting to the point where they couldn't cope anymore. Um, and yeah, it was really difficult as well to hear in the sense that it was hard in them situations to access relief, so there was literally nothing they could do to manage this pain other than to just sit in it until they got back to their comfortable, safe environment at home where they could express and access the relief they needed.
Speaker 2:Um, and a lot of parents reported that they want teachers to know that if their child is telling them that they are in pain, they need to take it seriously because to get to that point they're in a lot of pain.
Speaker 2:They won't say unless they're at that intensity level, and so I think that's really important from a scholastic setting to kind of understand um. I mean said there were situations where there were safe and trusting relationships that they could utilize. So children who had an SEM, for example, or they sat next to someone who had an SEM that they, you know, became familiar with, they knew about them, they knew they would help, they would tell them um, but typically just a teacher, general teacher, at the front of the class. They'd just say nothing, which was quite heartbreaking to hear. But as an autistic person, reflecting on my childhood, I totally understood and related to um. I'd go the whole day with a migraine and not say anything until I got home and then it was like just this emotional release when I stepped through the door, um, because I just couldn't hold it in anymore.
Speaker 1:My spoons had gone yeah, yeah, I think that's hugely relatable, absolutely. I think so many of us would have done that, and you've done lab-based tests as well, or in pain tolerance, so I'd love to know more about that as well.
Speaker 2:Yeah, so essentially, I did a lab-based experiment which compared pain thresholds and tolerances and pain intensity ratings of these thresholds and tolerances between autistic and non-autistic children. Now, interestingly, when we have been looking over the data, we didn't actually find differences in tolerances and thresholds between. So here, autistic children are feeling pain and their processing of this pain appears to be similar to non-autistic children. However, interestingly, the evaluation of this pain is different. So autistic children are rating their pain much more intensely than non-autistic children, and I think that's something really important we need to consider. Is this just again down to the evaluation? Pain is more intense for autistic children or, on the opposite side, because they've been gaslit for so long, do they feel they need to report higher intensities to be heard? We don't know. We just know there's these high reports of pain intensity and that's something we really need to give the time to look at.
Speaker 1:Again, it's absolutely fascinating and so valuable. You've kind of already talked about some of the practical takeaways, but are there things that you think are really important that can be taken from the research and sort of used in a practical way?
Speaker 2:yeah, I mean, the biggest thing is to put their misconceptions to bed. Like autistic children feel pain, like that is point blank pain is there um. My supervisor, dr David Moore, always says for healthcare providers if you're treating children in pain or treating autistic children in pain, we need to adapt this understanding and reflect it in our practice. And I think, for me, one of the biggest things is taking the time to build, like I said, this trust and relationship. Take the time to speak to the child, you know, ask them what are you enjoying at the minute? I always ask children about um their special interests because, I mean, I love speaking about my special interests. So I think it's just. I think it's just something as autistic people we can bond on um if we do have them. So I just little things like that.
Speaker 2:Take time to understand the person in front of you and and take them as that person. You know, our understanding of pain is that pain when we measure it as objective. However, I think at times we fail to appreciate that pain is subjective and that it's subjective to the person in front of you. So just listen and take the time to really um process what they're saying and give meaning to that, I suppose, um, and additional to that, um, using what one of the parents described in the interviews pain anchors and so using context that is applicable to that child, finding out, whether that be from their caregiver, whether it be from the child themselves, about their past experiences of pain, so you can really contextualize what is happening now.
Speaker 2:I think that is really useful as opposed to just seeing pain as an arbitrary number. And I mean, if someone says to you what's pain like for you, it can be really. It's so difficult to think well, what do you mean here, whereas if someone says, um, is this pain like a migraine pain, you could think so, what, what was a migraine that I had like for me? And then begin to dissect what that experience was and then apply it. Um, it sounds confusing, but when you do it in the, in the moment, it's really good. And, um, I found it useful in the interview study. We provide it. We asked the children to provide a past experience of pain, so when we were asking about pain in the current moment, it was contextualized to that and that was really successful to help structure the interview and get information from them.
Speaker 1:That's really clever because I've heard that sort of approach used around mental health. Yeah, to help someone talk about their feelings, try and think about a time where they had a similar feeling, if they can't talk about what they're feeling in in the moment. But I've never heard it used for physical health and it makes so much sense that that would be an approach to you.
Speaker 2:Yeah, and with the parents saying a pain anchor. I just thought what a fantastic time to use just anchoring a current pain to a past pain, like it was just amazing to me. I thought I'm gonna. I'm gonna use that, I'm gonna say the parents gave me it, but I'm gonna use it definitely.
Speaker 1:It's well worth it absolutely. And what I particularly love about the work that you're doing and I'm always really excited when an autistic researcher is researching autism, because I think there's such a unique and really important perspectives that you can bring so are there some sort of adaptations that you've made that other researchers might be able to sort of take in and use themselves?
Speaker 2:absolutely. I think within research, lived experience is paramount, you know. So I always like to think if I, as an autistic person, was taking part in this research, what would I like to see? But on top of that, there's a really, really easy step where you that you can take, where you just ask the autistic person what can I do for you to make this a comfortable experience. So it's kind of again double edged in terms of the approach, in terms of the adaptations that I put in place on the basis of my experiences and speaking to to um.
Speaker 2:So I had a ppi panel of autistic people who I engaged with and and their insight was absolutely paramount in making these studies as accessible as we could. Um, I had my typical participant information sheet, so the written sheet we essentially give to participants, which explains the study, what the data will be used for, like, what to expect and. But on top of that, I created a parallel video which essentially was me sat in this room. The participant could see who I am, they could hear my voice, and I'm always very explicit to the fact that I am autistic, because I think, if I'm expecting you to disclose, I'm going to disclose because I just think it's the correct approach to take. On the flip side, if you aren't autistic, I think it's very important to state that as well when you're working with autistic populations. Um, but essentially I just speak about myself a little bit that I loved giraffes I mean you can see behind me, I love Disney. Um, just being very honest about who I am as a person because, again, if I want you to be vulnerable with me, I'm going to be vulnerable with you. It's it's not a transaction here. It's an interaction between the two of us and I think to make that comfortable, we need to be open. Um, but alongside that, I would basically verbalize what the study was. I, um my sister, edited one video in particular and she's absolutely amazing with graphics and animation, so she was putting little pictures on screen. So when I was describing anonymity to the children, I was kind of saying it's like you're a ghost essentially, no one will know that you've even been here and she put this ghost on screen to provide visual context, which was I don't know how she did it, but it was great. So, just providing a video element and being open, and that was for both the interviews and the lab-based study. But for the lab-based study.
Speaker 2:We also took it a step further, whereby for me, as an autistic person, to go to somewhere I've never seen before, I'm on the internet, I'm like what does this room look like? How do I get there? What I want to know the ins and outs. So I reflected on that and thought children aren't going to want to come to a university. They've never been to a university. It's already an uncomfortable experiment. You're telling children you're going to feel pain like I would not want to do that as a child, and so what I had was my mum coming and she essentially recorded me from the point I would meet the children and we filmed walking through the building, getting in the lift, showing what the lift looked like, the walk to the lab, what the lab will look like, all the equipment and basically showing what the study was, from top to bottom and even down to me, walking back to the lift, going back down and leaving again, just to really understand what that process was like, so they could grasp.
Speaker 2:Because it's all well and good saying you're going to do this, but if you don't know, for example, if I say we're going to use an algometer, what's an algometer? If I can show you what an algometer is. It breaks down that uncertainty and the anxieties which may be a barrier, um, and then again just asking what I can do. What can I put in place? Um interviews? If you want to talk over the chat box, we'll talk over the chat box. If you want cameras off, cameras will be off in the lab. If there's something you don't want to do, we don't do it. I'm not going to force anyone to do anything and I think it's being open about that, um, and it's not difficult either to do it's. It can be quite straightforward, yeah and it's.
Speaker 1:That's it. It's not ginormous changes to the research process that people are making. It's, as you say, it's about asking people what makes them comfortable and trying to put yourself in their shoes a little bit, and making those tweaks. But yeah, it's fantastic that you've done all of that, though, as well. It's such a good example of how to do it, I think. Thank you, and what do you find is the hardest part of being an autistic autism researcher?
Speaker 2:so I think for me there's two big hitters in terms of what's difficult, the first being, as an autistic person, consistently engaging with deficit-based research is really hard and it's hard for me to consistently see that I cannot do this, I cannot do that, um, I mean, I'm a low support need autistic person, so the research I engage with is typically with low support needs.
Speaker 2:To typically say that an autistic person cannot go to school, for example, they cannot engage with, but I just think it's, it's really harmful to see all the time and that's not to say that there aren't autistic people who may struggle to go to school or go to work like that is entirely reasonable and but I think it's the way it's phrased, as a deficit.
Speaker 2:Saying we consistently cannot do something, is really difficult to to see, um, additional to this, as an autistic person, I know the importance of this research and it's really hard for me to give this research away and feel like I've done enough with it, like I'll look at the analysis and I'll think have I interpreted this right, have I done this correctly? Because if I put this out into the world and it's used to support things and it's wrong in some way, you know, I don't want to continue to, you know, promoting the kind of um misconceptions that have already been there. I want to make research that will make a difference, and it's really hard to know when is enough um, and trust that it's enough yeah, I absolutely get that.
Speaker 1:I think there's a level of responsibility that can be such a weight at times.
Speaker 2:Yeah, it's really hard and it's very self-inflicted as well, like no one's telling me you've not done enough, no one's saying that, it's just I inflict that pressure, and it might go back to me as well, being a perfectionist, but um, it's just knowing when enough is enough. And yeah, it's a hard battle it is it definitely is.
Speaker 1:I get that um, and then, on the flip side, that what is the best thing about being an autistic autism researcher?
Speaker 2:so I absolutely love working with autistic children.
Speaker 2:I think to be able to engage with children who are so forthcoming with wanting to make changes for future autistic children I just think it's amazing that they're willing to be vulnerable with themselves and share the sides that have not been great for them and I just think they're a credit to themselves and to the evidence base that we are creating here is that it won't be possible without them.
Speaker 2:So to see such amazing children, I just think it's an absolute pleasure to be able to interact with them and, that being said, I think being able to be a part of improving the evidence base and hopefully creating changes for autistic children, particularly from an autistic lived perspective, because a lot of our research base hasn't included lived experience in the past and is predominantly non-autistic people explaining autistic experiences and not to say that that isn't valid, it's very useful and we do need to have a wide perspective and but to be able to input my lived experience and to reflect an autistic experience, I think is really positive for the space and I think it shows as a society we're not there yet by any means, but we are beginning to appreciate and what lived experience and patient involvement looks like and be able to embed that into our research again. Long ways to go, but we're making those steps and I think that's a really nice thing to be a part of absolutely.
Speaker 1:Yeah, it feels like there's been a real paradigm shift and it's a very exciting time. But I said a ways to go, yeah, but to have people like yourself and and sort of leading that is it's very exciting, I think. So I'm delighted that you're doing it.
Speaker 2:Yeah, I think that's one of the best parts of the job is just being able to be a part of this change and elevate voices that have typically not been heard. I think it's just fantastic to do.
Speaker 1:Thanks so much to Bethany for taking your time to chat and share her expertise. The podcast is not a substitute for medical advice, so if you're having any difficulties with the issues discussed, please reach out to a medical professional. Thanks so much for listening.