The Middletown Centre for Autism Podcast
The Middletown Centre for Autism Podcast
Dr Mary Doherty- Healthcare
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In this episode, we chat to autistic health professional and researcher, Dr Mary Doherty. Mary has driven research to support autistic patients and healthcare workers. We find out about her work and her experience as an autistic autism researcher.
You can find some of Mary’s research work here: https://www.researchgate.net/profile/Mary-Doherty-9
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 the powerhouse of autism research, that is, dr Mary Doherty. Mary is an anesthesiologist who was diagnosed as autistic in adulthood. Since then, she's thrown herself into the world of autism research, focusing on healthcare. She's built a community of autistic health professionals and is making change for autistic people working in healthcare and for patients.
Speaker 1:I should say that we do talk about mental health challenges and difficulties within the healthcare system, which can be hard to hear about. So check how you're feeling before you listen. I should also say that this was a cursed recording the internet. Gods were not smiling on us and we had to keep restarting our conversation. It might sound a little disjointed because of that, but I know I still enjoyed our chat and I hope you do too. So, mary, thank you so much for joining us on the podcast. Um, you're an experienced anesthetist and you've also become a very experienced and very respected researcher, so I'm wondering what led you to make that leap into research.
Speaker 2:Yeah, so this all started for me with the, as I Am, clannachilty Autism Friendly Town project and I was asked to do some training for the local health care providers.
Speaker 2:I'd never done this before, so I wanted to just make sure that the training I would give would be based on the just based on the experiences of autistic people, so not just my own experience and not just my own, my own knowledge or experience.
Speaker 2:And so I started doing some investigation and I did some focus group work and I did some surveys and realized that so many of the health care issues that were common to so many autistic people things that I had experienced myself, that I didn't realize were related to being autistic, and things like not being able to use the phone or just avoiding making making appointments because it meant using the phone, and things like that not being able to follow up on um appointments, not managing to change appointments and you know, um, things like that the sort of thing that I had been conscious of and indeed conscious of quite a degree of shame around, really, um, because I just didn't understand that this was a part of this is associated with being autistic.
Speaker 2:Um, and then I realized that the outcomes for autistic people in terms of health care were, you know, really not good um, and I could just see those links and I think, as, as an autistic doctor, just being in that sort of unique position where I could straddle both communities, both um and uh, maybe just be in a position to, to make a difference, to help and particularly in terms of knowledge and training, uh, with our colleagues. So that's what started the process, um, and yeah, as I look back, I wish, I wish I'd got into it an awful lot sooner, I wish I had, you know, done, done this way earlier in my career. But you know, it's never too late.
Speaker 1:Yeah, and goodness knows you've made up for lost time. You're a very busy woman.
Speaker 2:Yeah, that is true. But you know an autistic person with a special interest. Hey, this is what you get.
Speaker 1:Exactly. It's fantastic and then. So you've been very public about the fact that you are autistic and you're a doctor and you've sort of discussed your own experience, alongside the research that you've done and the experiences of your participants. Were you nervous to talk publicly about your, your own autistic identity?
Speaker 2:oh gosh, yeah, initially, mostly, I think, because I was specifically advised by several consultants, several medical consultants in various specialties you know that I really should not do this, I shouldn't talk about it. And you know, even now, even with the impact that we've had not just myself but colleagues, you know, in Autistic Doctors International, even with that, I know that quite a few colleagues would feel that, you know, maybe I really should not be talking about this and it's bizarre. It's almost like it's bringing the profession into disrepute. It's ridiculous. There is that, that idea out there that you can't be autistic and be a doctor. Um, at least you know, yeah, you know, that that is that is still, unfortunately, very pervasive in health care. Um, and while we are working hard to challenge that, um, it it still is there.
Speaker 2:But the way I looked at it I mean, being open about being autistic was undoubtedly beneficial for me because it meant that I'm with you know, I, I spent less energy masking. Um, and also, you know, my diagnosis came about after my son was identified and, um, you know, I mean, I've two neurodivergent kids and they're amazing, I'm so proud of them. I'm certainly not, you know, I mean, I have two neurodivergent kids and they're amazing. I'm so proud of them. I'm certainly not, you know, like not ashamed of them. You know, being neurodivergent, why should I be about myself?
Speaker 2:I'll be honest, there was a bit of a journey to get to that point. You know, because there's so much negativity and you know there's so much stigma around autism that you know, initially it was quite difficult. But you know there's so much stigma around autism that you know, initially it was quite difficult, but you know, no, it was absolutely the right thing to do. And then, particularly when I saw members, members that joined us in Autistic Doctors International in significant difficulty because of not being understood, not being able to get the accommodations that they needed, and then just realizing that, well, you know, I can't let people needlessly lose careers when you know I can potentially help. And that's really what.
Speaker 1:What drove me towards talking about this, um, publicly, um yeah, yeah, and you mentioned Autistic Doctors International, which is sort of a community that you've built up and and brought lots of other people to to build it up with you now, because it's gotten so big, um, of autistic medical professionals. Um, what was your hope when you were initially sort of putting together the idea for that?
Speaker 2:Prior to setting up the organization, I'd been involved in the autistic community for a good number of years and, interestingly, I didn't tell many people that I was a doctor for quite some time. I saw the need for a peer support group for autistic doctors. There were at that time a couple of organizations for neurodivergent uh, health care professionals, um, and I just found that even within that space we you know the the numbers of doctors who are identifying as autistic even in that space was quite low at the time. Um, and we, I just felt that we needed our own space, but also, as well as peer support, I had, I, I always wanted ADI to be more than just peer support. I saw the potential for being able to harness our collective knowledge around autism in health care and just use that for the benefit of the autistic community.
Speaker 2:I was really conscious of how little knowledge of autism so many of my medical colleagues had. I mean, I had no training, you know, I remember absolutely nothing about autism, certainly not outside of pediatrics, and even in anesthesia we talk about autism in the context of, you know, premedication or intellectual disabilities, and so there's very, there was very little awareness, very little training and so much of the knowledge is just simply wrong. It's completely wrong. It is, you know, yeah, it's just completely wrong, and I wanted a way to to challenge that really and to change that. But equally, I was very conscious that just the fact that we were autistic, but equally I was very conscious that just the fact that we were autistic, it's this epistemic injustice idea, that just the very fact of being autistic, we don't have the same sort of credibility amongst our peers that non-autistic medical you know medical colleagues would have, and I was very conscious of that from the beginning. So I was very keen to build up a credible organization that would be taken seriously, really, and the way to do that was through research and publications in the medical literature, because that's the only way things change in health care is data and peer reviewed publications, and so I really wanted us to go down that road.
Speaker 2:And then there was the advocacy side as well. There was, you know, so many of our colleagues were running into difficulties that were really easily solved if you were able to just put, you know, look at a situation through an autistic or a neurodivergent lens, you know, and we did some work around that area as well, um, so it was all of that right from the beginning. It was always much more than just a peer support group. But the peer support aspect has been it's just been amazing it's. It's so wonderful, it's so validating. It's been life changing, you know, and indeed life-saving for some, some of our members, you know. It's been really, really important. Um, and then we, we published about our experiences last year. We had a paper in Frontiers in Psychiatry which is open access, so anybody listening can look it up and have a listen or can look it up and have a read. It's the experiences of autistic doctors and we found some really interesting, interesting things which you might talk about in a bit. But yeah, it was always.
Speaker 1:It was always more than more than peer support and do you know how many members there are now?
Speaker 2:um at this stage we've about I think it's probably probably it's a bit fluid um, but I think probably about 900 in the doctors group. We also have, and that's international um. Uh, we also have an associated group for autistic medical students, um, and there's over 200 in that um, and we're just getting so many membership requests daily, um, we've had to expand the membership, uh, team um, so there's a few people working on, but we do have a bit of a backlog at the moment. But it's fabulous to you know, to, to just see all the see the interest. And what's also great is we have, um we've quite uh, we're very active leadership team um, and we've now and now several, several members of the, the leadership team, are openly autistic and you know so I'm not the only one talking about this publicly anymore, which is, which is wonderful yeah, and I can just imagine how many people there are who are, who have almost click join you know, who are waiting to find the courage to sort of go these are my people and sort of take that leap.
Speaker 1:So that's, it's lovely that you're there for them. That's really gorgeous absolutely.
Speaker 2:you know, what's really interesting is that the gap between somebody maybe hearing a talk or seeing some of our work and getting in touch, that has shrunk enormously. In the beginning, when I started talking about this, it was often six months later that people would say I heard your talk and I've been agonizing over this and I've been, you know, really trying to make contact, and it might be six months, nine months, and whereas now it's usually it's either straight away or it's a day or two later, or even sometimes in talks when because I do a lot, of, a lot of speaking, um, in various, various contexts and and even in, you know, in in the audience, commonly people, will you know, identify themselves and that's just wonderful to see.
Speaker 1:it's just super um yeah, times, times are changing, which is is really, really lovely. And then you mentioned the sort of the work that you've done around sort of barriers that health professionals face.
Speaker 2:Are there some common themes that you found in that? Yeah, absolutely, and you know it's all detailed in the paper that we published last year and we have more work to come on that project, but that was just the first paper, um, but the first thing to say is that and again it's about dispelling myths and misconceptions the first thing to say is that most of us are doing absolutely fine, you know, and that we need to really challenge this assumption that being autistic or being neurodivergent in medicine is associated with being in difficulty. And because that and that association is really really strong, and a lot of that is because, um, the only people who are being identified are people who, who do get into difficulty, um, and the vast majority of people who are working way fine with no issues, um, or at least no visible issues. We're managing to mask, you know, any challenges, um, that's the majority of people, but they generally tend not to disclose and that's just because the you know the stigma is is so profound and, um, you know it's the culture in medicine, I mean, medicine is so ableist, you know, so it's it is quite difficult. So people who don't have to disclose generally don't, um, and that's why that, that's where that association comes from. But it's not. It's not true. In our survey, 82 percent of our respondents were working, um, you know, without difficulty, um, which I thought was great.
Speaker 2:But I mean there are certain things that that do crop up over and over again and you know, um, sensory issues. You know so many of our members struggle with sensory issues at work. Um, I mean health care. It's just such a, it's a sensory nightmare. A lot of health mean healthcare. It's just such a, it's a sensory nightmare. A lot of healthcare settings, you know it's sensory nightmare to access, as you know, as a patient, if you're unwell, but equally so to working, it can be really difficult. So, sensory issues, executive functioning challenges as well. You know, particularly things around predictability. That's really difficult because health care is such an unpredictable environment. But you know there are a lot of things that we can do to just maximize the predictability you know in our day, which really really helps.
Speaker 2:But again, communication is the big one that everybody tends to associate with being autistic, and it's the one thing that people say well, you know how can you be a doctor? You know, if you you be a doctor, you know, if you can't communicate, we communicate really, really well. You know, that's that, that's the, that's the thing and it's it's. It's just one of these myths that we don't communicate well. Um, no, we communicate much easier with autistic colleagues and indeed probably autistic patients as well.
Speaker 2:Um, but we do, and a lot of our members will have over the years, developed a special interest in communication. For example, you know and have learned communication techniques as a special interest. You know, and you know, as we know, we get very good at things that we take a particular interest in. So we have lots of members who have won awards for communication skills, who have won awards for patient care and patient interactions, and it's just fascinating, you know. It's really interesting to watch. But interestingly, what we do find is that our members find communicating with colleagues and managers much more difficult than communication with patients. So in our survey, about three quarters of our our members who responded to the survey said that they had difficulties or challenges communicating with um managers, peers, uh, colleagues. Only a quarter said that they had difficulties communication with patients I love that?
Speaker 2:yeah, yeah, it is, and it goes against the expectations. You know, it's common to assume that, well, if you have difficulty communicating with colleagues, then of course you're going to have difficulty communicating with patients. But it's not true and the reason for it is because when we're communicating with patients, we do it in a very specific way. We've been trained to do this. It's very goal-directed, it's led by the doctor. It's very goal directed, it's led by the doctor. It's um, it's much more uh, structured than communication with with colleagues, for example. That's much more socially based. Um, you know, and we, we might have more, more challenges in that sort of setting, um, so, no, I mean, we, we do very well with patients, um, so you know.
Speaker 2:And the other thing that's really interesting is the specialty breakdown in our group. The biggest group and this is not what people tend to expect the biggest group are general practitioners and then the second biggest group are psychiatrists and then, third, anaesthetists, anaesthesiologists. And when you consider the relative numbers of gps and psychiatrists in practice, then we have to wonder are psychiatrists the most overrepresented group in in adi? Um, which certainly seems to be the case and that has been consistent, uh, since we started. Um, it's really interesting and it goes against what people assume. People tend to think we're going to be. We're all going to be pathologists or radiologists or lab based specialties. You know people don't expect us to be in relational specialties but we are and we do very well.
Speaker 1:And yeah. I love that idea that a lot of people are really flourishing in what they do, because I think so often there's that assumption like I was working on something that was sort of about supporting young people to get involved in sort of different types of recreation and it was like oh, what are the difficulties going to be?
Speaker 2:and I was like we don't.
Speaker 1:We don't need to assume, for starters, that there's going to be a ton of difficulties and also, like, what amazing things are they going to bring to us? What are the skills and, you know, hyper focus and flow and all of these fantastic things that they'll be able to bring?
Speaker 2:so, yeah, it's, it's really interesting no, absolutely, and we see it all the time. People, autistic adults who are thriving are those who have managed to turn, you know, a lifelong special interest into a career research. There are so many people in academia researching their special interests. I mean, how else, you know, like it? Yeah, right across all, all fields. Um, there are autistic people absolutely thriving, often in really niche areas. Um, I think it's really important that we show a pathway for autistic young people who might have an interest in you know, in whatever area, and just illuminate the pathway so that it's.
Speaker 2:You know, I get so many emails from parents saying that they have a child who's interested in science and biology and human physiology and pathology and medicine and, you know, they wonder could they possibly be a doctor because they're autistic? No, yeah, of course, you know, if somebody has the intellectual capacity and the interest, and absolutely no reason why, you know, being autistic should be a barrier. Not at all. Medicine is a difficult career for anybody to embark on. You're a divergent or not, you know, there's no two ways about that. It's it's. It's a tough career choice. Um, and there are potentially specific challenges through being, you know, in terms of being autistic, particularly around a lack of understanding and, you know, sensory issues and um, but these can all be overcome If somebody has the intellectual capacity and the interest. Um, certainly, being autistic should not in any way be a barrier to you know, to pursuing, you know, the career that somebody, somebody wants. Peer support helps helps, for sure, but it's not just in medicine, it's all the other allied health care professionals, you know, and all the other allied fields that really needs autistic people, particularly those who work with autistic people, autistic kids in particular. I mean, you know, occupational therapy, speech and language therapy, physiotherapy, psychology, and all these fields need so many autistic professionals, because who else is going to get it in the way that we do, you know?
Speaker 2:I mean, I have a project currently with a group of autistic psychiatrists and there's one vignette in particular that really, really struck me.
Speaker 2:It was, you know, one of the child and adolescent psychiatrists talking about being in a consultation with a family where the kid is coming for an assessment, um, and you know the child is describing the issues that they're dealing with, potentially at length, and the parent is going in oh I'm sorry, he's going on about this, and you know he's going on and on about this and it makes no sense, and the psychiatrist goes it makes perfect sense, yeah, and then she explains, and she explains it in a way that the child is going yes, yes, you know, finally somebody gets it.
Speaker 2:You know the parents are kind of going oh, what happened there? You know, and it's just that level of rapport that we can develop with, you know, with autistic um patients, clients, and it's just so important that that that those voices um are heard with within medicine, within health care, particularly, I think, within psychiatry um, so yeah, so that's, uh, that's one of the current projects that I'm particularly excited about so, as well as supporting medical professionals, you've done lots of work looking at the impact of the health care system on autistic experience and some of your findings there yeah, I think, which what started my interest in this was just realizing that, um, outcomes for autistic people were just awful, um, in turn, even in terms of mortality.
Speaker 2:You know, just recognizing that autistic people as a group have shorter lifespans, just recognizing that autistic people as a group have shorter lifespans than non-autistic people as a group, and, well, you know, it's important to say that.
Speaker 2:That doesn't, you know, that doesn't predict anything for anybody. You know any individual. You know it's not something that people should worry about for themselves. And also, there's some data, some recent, more recent data, which shows that it might not actually be as bad as it was previously or that we might've thought, but, at the same time, there is definitely a signal there and there is definitely research from several different countries showing that there is an impact on life expectancy. And I started to look at this and I was realizing that so much of it was related to difficulty accessing healthcare, so that, you know, the healthcare is available but we can't access it, access it or use it in the same way as non-autistic people might. Um, and alongside that, recognizing that there's so much, there's so much research funding going into looking at things like the genetics and the causes of autism and you know all the sorts of things that weren't of any. You know potential use to us really as a community and just recognizing that we needed to do something about the healthcare issues.
Speaker 2:The healthcare barriers yes, we've been looking at this for the last couple of years and it started again. It goes right back to the Clonicility Project. It started with an initial survey that I did and that was looking at the barriers, and you know my first survey. The question was what do you wish your GP knew about autism? And it was when I got the answer to that and I realized, oh my goodness, you know, this knowledge needs to get out into the world. So then I, you know, moved into doing some more academic work around that the research cycle is just so long. I had no idea how long all of this work takes and you know so it was several years later when we managed to publish the findings, and that paper looked at the barriers that autistic people faced accessing healthcare, and we found things like communication barriers, such as using the phone Difficulty using the phone was the single most common barrier reported by our respondents but also things like sensory issues, communication challenges, communication challenges with both doctors and receptionists, and what we then looked at was self-reported adverse outcomes. Then looked at was self-reported adverse outcomes. So we looked at things like delayed treatment, needing more extensive treatment than if somebody might have presented earlier, accessing screening, things like that and what we found was that the access barriers were associated with the adverse outcomes. In hindsight not, you know, I mean not necessarily surprising, but that link hadn't previously been made in the literature.
Speaker 2:And what we then did because it was a mixed method survey, so that was the first paper was what we call the quantitative paper. So that was the numbers, the statistics. But then we also had a lot of free text, um, responses to our questions, um, and we analyzed all that data and then we published our second paper, which is the qualitative part of of the project, and basically what that was doing was looking at the stories behind the statistics, why these things might be associated, and we found some very striking. We had some really heartbreaking data. You know stories of people sitting at home, unable to access, unable to call for an ambulance, despite knowing that they were experiencing severe chest pain, possibly heart attack, people with appendicitis, and just not going to hospital, not going to a doctor or hospital, you know, until their appendix ruptured and they were very, very seriously unwell, even an ectopic pregnancy somebody having, you know, reporting not accessing care, you know, until they were really really um, unwell, um.
Speaker 2:Breast lumps you know describing experience. You know finding a breast lump and not going, not going to get it checked out and, of course, this is all anonymous data, so we have no idea whether you know that that respondent ever managed to get that, you know, checked out, just as doctors knowing this the medical significance of some of the stories that we were reading about, you know how medically serious these things were. It was just heartbreaking to read. What we did was we put all of that data together and we developed a framework which shows how all of the factors interlink together and how the early barriers, such as communication issues, diagnostic overshadowing and that's sort of where everything that every complaint that you might bring to a doctor gets put down to being autistic, um, and all these sort of things linked together to lead into health care avoidance. And how, when people try to access health care and fail to get the help that they need, how that leads to learned helplessness and fears of repercussions and health care avoidance, and then how that avoidance can lead directly to adverse consequences.
Speaker 1:Looking at it from the perspective of a journey through healthcare, it's really not difficult to see how these access barriers lead to, um you know, worse outcomes um worse morbidity and mortality for autistic people um that's it and, as you say it's, it's the barriers that are the issue and and that are leading to that and and so I think, if people are listening and they're sort of feeling a little bit anxious, and that those ideas, I think the work that you're doing and that other people in your group are doing is actively taking down those barriers, which is so important, and I think it's a it's a wonderful time to to sort of be autistic and see the changes that are happening.
Speaker 2:Yeah, that's that's very true, for sure. But it's important, I think, for us to tackle those barriers from from both sides, from um, from within the medical community, for sure, by by way of increased training, but also within the autistic community, you know, and with with the view to increasing health literacy amongst autistic people, because I think a lot of autistic people who will have difficulty accessing health care and, as I mentioned earlier, you know, there's feelings of guilt and shame and failure around all of that, and I've experienced that myself. I mean, mean, you know, I've had a significant diagnosis delayed by a year simply because I couldn't make a phone call to change an appointment, you know, and that's you know. As a doctor, that's you know it shouldn't be this difficult to access health care. Um, but it but it is, and that's. That was another interesting thing from our qualitative paper. Even respondents who identified themselves as health care professionals experienced the same sort of barriers, you know. They described the same sort of thing, you know, and we had several examples of people saying I'm a nurse, I shouldn't like I should be. You know why am I being disbelieved? I'm a nurse, you know, I should know these things.
Speaker 2:Most striking things in our survey was that the autistic respondents said that they, the autistic respondents, were more likely to not know when their symptoms warranted a GP visit. Um, and of course, understandably, that can lead into, you know, avoidance as well. Um, a lot of people talked about not wanting to waste a doctor's time, and I just really want to, you know, put that out there and say challenge that you're not wasting a doctor's time if you have symptoms, if you need to see a doctor. It's just so important that you realize that's what we do, that's what we want. We want people who are sick to come to us so that we can help um, so no, you're definitely not not wasting a doctor's time.
Speaker 2:And but that was one of the, that was one of the recurrent issues for the autistic group, and so what we've done is, with a couple of colleagues in ADI and we're now writing a book, um, about health care for autistic people, and so we hope that that will help people to just understand a bit more about their health and in a way that's, you know, accessible to autistic people and will help people to navigate the health care system, because so much of the reluctance is just not knowing what's going to happen and not knowing how it all works. So, um, yeah, so that's. That's an exciting project. We've been working on it for a couple of years.
Speaker 1:Um, we'll get there eventually oh, that's going to be so valuable when you do that. That's brilliant. You actually reminded me, um, I broke my arm and my shoulder not too long ago and, um, like I, it was broken. I knew that it was a break, but at the same time I was like what if it's a dead arm and I'm wasting their time going in?
Speaker 1:and I was really trying to sort of convince myself that I didn't need to go to see anyone because I could just be a dead arm and then it'll be so embarrassing and they'll their time will have been taken up and, oh yeah, we can talk ourselves around in circles sometimes yeah, whereas the reality is commonly we're, we're injured or very unwell and we don't look it.
Speaker 2:We look well. We don't show pain or distress in the way that non-autistic people do, in the way that doctors have been trained to look for and to assess for. And so that's a big issue, you know as well. Yeah.
Speaker 1:Yeah, and that's actually something that I found with when I was in, because I was quite chatty and, like you know, the mask came on. The worse I felt, the the better the mask was. So I was very chatty and very personable, and then it was only like hours after I've been sitting in the waiting room that they're like oh, we should have brought you in much, much sooner. Sorry about that, but yeah, it's because I didn't seem like I was in pain at all yeah, no, that's such a common issue for autistic people, for sure and you've done more fantastic.
Speaker 1:We were speeding through so much of the fantastic work that you've done and there's so much more for people to discover if they want to, and we'll have links and things for people. But another thing that you've done, um, is the space framework, which is sort of working to make healthcare settings, uh, more accessible for people. So can you talk a little bit about that?
Speaker 2:yeah, um, the space framework where that came from really was, and again, it was with two of my colleagues in ADI. So, sue Sue McCowan she is our site lead and Seb Shaw is our research lead and the three of us co-authored this paper. We developed the framework together and it came from our insider position really as autistic doctors. So knowing autism but also knowing healthcare and medicine, knowing what our colleagues needed in terms of education and in terms of knowledge around autism, and, while I've been involved in writing lots of things from policy documents to book chapters to, you know, very various papers around health care, just recognizing that for the vast majority of artists Sorry, for the vast majority of our colleagues and what they need is something that's really easily accessible, very few of our really busy colleagues across all specialties have time to be wading through long, convoluted documents. So, for example, I've co-authored two papers in the British Journal of Hospital Medicine. They're both open access and one was on recognizing autism in health care and the other was on making reasonable adjustments in health care for autistic people in health care, and they're both comprehensive papers that took a bit of time to read and to digest and we just recognized that they just weren't accessible to a lot of our colleagues in the way that we want. The other thing is that in medical education, acronyms and frameworks and mnemonics are so important and that's because there's just so much knowledge, there's so much information that has to be taken in and retained. So if there's a good acronym or a good mnemonic or a good but in particular something that goes along with a good graphic, then it's just so much easier and people find it so much, so much easier to remember Um, and then people with you know in, in with such conditions, get better care, because people, you know, remember the details around, around the conditions. So anyway, so this was, these were all the things that were feeding into the development.
Speaker 2:And then the concept of autistic space. As we know, something very precious to the autistic community um, you know, where spaces and events and places where you know autistic needs are prioritized, where autistic people set the agenda, um, and we use that as an acronym for what we think what we believe are are the core needs of any autistic person. And particularly, we wanted it to apply to the whole autistic community, to all autistic people, because that's the thing, especially for a lot of our colleagues, autism seems really nebulous. People find it very difficult, very hazy, very difficult to get their heads around it, don't really know what it means. They have assumptions. They might think it means intellectual disability. They might think it means not speaking. So many of them think it means no empathy, and we can come back to that again, but there's so many myths and misconceptions that we really wanted to address the things that are common to us all, and that's what we hope we've done.
Speaker 2:Space stands for Sensory Needs, predictability, acceptance, communication and Empathy, and then that's built on a foundation of three domains physical space, processing space and emotional space. Anyone in healthcare will recognize the acronym ppe, especially after the pandemic, and so that can be quite useful. Um, but space itself, it's a lovely descriptive acronym because, um, if an autistic person is, you know, is distressed or overloaded, what do we need? But we need space, and so it's easy for people to remember that we specifically wanted something that would start with S, because we believe that sensory needs are absolutely core to the autistic experience. And, yeah, just you know, it's been incredibly well received, phenomenally so, much more so than I even had anticipated.
Speaker 1:Yeah, it's so practical and so user-friendly and I think, as you say, it's something that on its own immediately makes sense to people, but then when they dig a little deeper, it all makes sense again. Do you feel you're facing barriers as a researcher still?
Speaker 2:Oh yeah, definitely for sure. Yeah, it's really difficult to be autistic in research at the moment, I think, particularly in biomedical autism research. Very difficult sort of things in medicine stigma, um, myths and misconceptions, lack of understanding, um, just lack of awareness really. And the difficulty is that so many researchers are autistic, um, whether they know it or not. You know, some of them do know it. A lot of them don't. They don't realize that they're autistic, um, they don't realize that the reason they have, you know, developed such a deep knowledge and interest in autism is because they themselves are autistic. But a lot of them are coming to that realization.
Speaker 2:But the challenge, similar to medicine, is disclosure. You know, there are genuine career risks for both doctors and researchers in terms of disclosing that they're autistic. Um, there's, you know, there's the risk of an instant loss of credibility, um, so that's that's probably the biggest issue, I think, because I could really, you know, I think what would really help would would be a lot more openly autistic, uh, peers in research, um, but again, it's that circle, it's the current culture makes it very difficult to be openly autistic and that will only be changed by people becoming, you know, being more openly autistic. So it's changing. It is changing gradually. I mean, there's some current work that I'm involved in looking at with a colleague in the AIMS2 trials consortium and she's looking at the profile of the researchers and including questions around neurodivergence and actually, far more than expected, um have uh disclosed that you know that they are autistic, or you know, think that they might be autistic, or you know um, but again, most, most haven't disclosed, so most certainly aren't, aren't openly autistic, um. So I think that's one of the biggest issues really.
Speaker 2:And then it's about getting to the point where our voices are, getting to the point where our voices are valued as professional peers, not just. You know experts by experience, because so many of so many of us are professional researchers, professional. You know experts by experience because so many of um, so many of us are professional researchers, professional. You know professional clinicians, um, and it's it's very hard, I think, sometimes for people to to make that leap and um and and see us. Even even in the biomedical autism research world, I find that I'm I'm viewed as one or the other Um. You know, it's taken quite some time before people have integrated those two perspectives and it's happening now, which which is wonderful, um, but but it's been interesting to watch that process happen. Um, but I think it's it's just so important. Same as in medicine, it's really important that you know, autistic researchers have have peers and have seniors and have mentors who are autistic.
Speaker 2:But I got distracted there. What I was going to say was what I think is really important is that we get to a point of parity of esteem, because that's still not. That's still not the case, you know, but I think we are moving in that, in that direction. Autistic people need to be setting the research agenda. Autistic people need to be involved in funding decisions, because that's the big barrier at the moment. I think it's to do with the research funding environment, because there are incredibly beneficial changes happening in the autism research world at the level of the, you know, researchers and project level, but in terms of funding, still, you know, to get funding, that traditional deficit framing is still expected and again, that perpetuates all the the challenges that we're aware of. So that really needs to change in my view.
Speaker 1:Yeah, absolutely yeah, yeah there's very little funding. Looking at joy, you know because? But? But it's so important you know it's what we need to know.
Speaker 2:But absolutely, yeah, yeah, for sure. And autistic people need to need to know this, we need to know this ourselves. This is what this is what we need to know, you know, and we need to maximize, um, the things in our lives that do bring that autistic joy. We need to, you know, um, yeah, just cultivate our interests, focus on our interests, you know, not be distracted from, you know, supposedly obsessive interests, you know, no, no, no, no. You got to, you got to nurture this, these things for your kids, yeah, no.
Speaker 2:And for me, it's all about the next generation, you know. It's all about, you know, helping the next generation of autistic kids to grow up without the battle scars that we all, you know, those of us in our generation, had to, you know, acquire it along the way. And I think, particularly in terms of mental health. It is so much of the awful mental health outcomes for autistic people, so much of that is preventable not all for sure, but so much of it is preventable. So that's what I think is important, but mostly in research, particularly, it's about changing culture, just so. That's that's what I think is um, is important, but mostly in research, particularly, it's about changing the culture, just so, that it's safe to disclose isn't it bizarre that you suddenly become less respected when you identify as part of the community?
Speaker 2:that's being researched, it's yeah, it makes no sense at all absolutely not, not Particularly, when you know so much of what is written about autism and spoken about autism it's just external, it's people looking at behavior from an external perspective with no concept of the internal experience. You know, and that's what I one of the papers that I wrote about was on what I termed weaponized heterogeneity and that concept. It's where commonly you see disagreements, you see arguments between sort of autistic adults and parents of autistic kids. You know, I mean, that's the thing that we're aware of, no-transcript, and that's one of the reasons why I feel it's so important that we do speak out about these things. You know, we have so much in common in terms of our internal experience. There's so much research that is really genuinely beneficial to the autistic community that has come from autistic researchers describing our internal experience and the fact that that is only now being recognized. I think it's partly because we're the first generation of autistic adults, you know, who can remember back to what it was like to be autistic kids, you know, and to share that. But I think it's really important that we do and that we capture those experiences in research because that benefits the whole autistic community. You know, how do we know about sensory issues? How do we know about the need for predictability? And, of course, our autistic peers, who cannot communicate these issues for themselves. We have to communicate these things, these points, on behalf of the whole community.
Speaker 2:It goes back to the earliest days of my involvement with all the autistic research, just being at an event where non-speaking autistic people and those with co-occurring intellectual disabilities and those who needed to be in residential care. We were all attending the same event and realizing that so many of the sensory issues in the environment we all shared. And then getting to, you know, getting into conversation with somebody who was, you know, in residential care, needing full-time care for their own safety, and just realizing that we had really similar approaches to our special interests and we just, you know info dumped in turn and it was wonderful, and it was such a fabulous conversation. We were both standing and then I recognized that we were both stimming in, you know, together, in sync. It was it phenomenal experience and for me that was a life-changing day and I realized, hang on, we are not, you know, two separate groups as so many people think. Not at all.
Speaker 2:There is so much that we share and really, again, that goes back to the space framework. That's what we really wanted to get across with the space framework. These are things that all of us share, and probably my most favorite project to date, anyhow, is um. There's a residential service for um people with intellectual disabilities, autistic people with co-occurring intellectual disabilities, and they're using the framework. They have found it to be helpful. Um, and that's just so validating. It's just lovely brilliant you're.
Speaker 1:you're the the busiest person that I know by far, so I'm sure you're working on many different things Are there particular things that you're very excited about that you're working on or are working on next.
Speaker 2:Yeah, there's a lot happening. Delighted to be working with yourself and the Scientific Committee for the Autism Europe Congress Not sure if we can say that on this, can we? Yeah, so really excited about that. There's a lot happening in the world of psychiatry, both at home in Ireland and abroad. So I've been involved with the training for psychiatrists in the UK, so that's with the Royal College of Psychiatrists. So I've been a part of um deliver, developing and delivering that training, which has been really, really good. Um, I've got an upcoming chapter in a psychiatry textbook that I've coauthored. I'm looking forward to that one. Uh, it's in seminars in general adult psychiatry, so a lot of psychiatrists will will use that to sort of update their knowledge on all aspects of psychiatry and so it's great to get that, that, that one, out there, and doing some work with the Irish College of Psychiatrists as well in terms of training for their members. But, really excitingly, we're making links with and this isn't just me, it's not, you know, it's, it's ADI members in general and particularly in the psychiatry group, and we're making links with the american psychiatric association. Um, yeah, which is, which is very exciting. Dr bernadette grosian is our psychiatry lead in in the united states and she's a retired professor of psychiatry, um, and she's been involved in this work with the American Psychiatric Association and there's now been a working group established to look at autism in adults, which I'm really excited about, and there's a presentation at the upcoming annual Congress, so that's very exciting. In healthcare more generally, as I've said, we're doing the book and the book on health care. It'd be fabulous to get that finished this year, but we'll see.
Speaker 2:And most of our work in terms of ADI at the moment, in terms of advocacy and education and training, is all based around the space framework and just trying to get that autistic space framework as well recognized as we can. I mean currently we've had like 20,000 downloads, we've had translations and it's been translated into traditional Chinese, which I'm utterly thrilled with. And we're using this base framework as the basis for, you know, for all of the work that we're doing really at the moment. Because you know, again, if there's one framework that everybody is familiar with, it just makes it so much easier in terms of education. So we have a paper coming out in um, in the british journal of anesthesia education, and that's where we've basically, with a couple of colleagues in the anesthesia group um. We've we've written a paper on providing anesthesia for autistic people and that's using the space framework. So that should be out.
Speaker 2:And then, of course, I'm involved in a lot of stuff with autism research. So ZM's two trials where we've had a really significant impact in terms of changing the direction of that research project. You know there's there's work being done on autistic burnout, for example, a concept that you know the researchers just weren't familiar with at all. So there's a project on that. We've done some work around bridge building and education and just building consensus with the biomedical autism researchers, which has been difficult but it's been fascinating work.
Speaker 2:And one of the really nice things that has come out of that is a new network, respect for Neurodevelopment, or FREN, and that is a network. It's a research network led by Professor Eva Loth, who's Deputy Director of the AIMS 2 trials, and so she set up this network and it's amazing because it's been participatory and neuroaffirmative from the very, very outset. You know there are technologies for children and for neurodivergent kids, so that that's one of the projects that I'm really excited about. So we're in the second year of that project, which is really exciting, and I'm still battling through my PhD really exciting. I'm still battling through my PhD, so that's a project on autistic psychiatrists, which is, yeah, there's a lot of really interesting data there, so I need to get focused on getting that data out there. Another big one that I'm interested in is that I'm delighted to be involved in is the autistic experiences of breast cancer, and then I'm doing a lot of work around reasonable accommodations and the needs of autistic colleagues and lots of other exciting collaborations.
Speaker 2:Um, the busiest person I know by far my other goal is to get back to skiing and climbing this year good when, when you squeeze that in in. I do tend to work on holidays and yeah you know it would be nice to go on a break without the laptop at some point, but we'll see.
Speaker 1:And then just my final question for you was if you could give advice to your younger self, what would it be.
Speaker 2:If you could give advice to your younger self. What would it be? Just wait, just wait. You will find your tribe. You will. You're not alone. You don't have to be alone, it's not just you. Just wait.
Speaker 1:That's gorgeous.
Speaker 2:I wish I'd known that. The other thing that I really wish I'd known as a kid was that it's okay to be solitary. That's the message that I wish I had been given, rather than this expectation that we're supposed to be sociable and popular and you know all that, particularly as girls. Um, that expectation is huge. Um, I'd have been a lot happier if I had been validated in my need to be, to be alone and to be solitary. And, yeah, that message was it was one I didn't get, and it's a shame, it's a pity yeah, lovely though.
Speaker 1:Thank you so much, mary. Thanks so much for listening to the podcast. If you want to know more about Middletown, you can find us on Twitter at Autism Centre, or on Facebook or Instagram at Middletown Centre for Autism.