The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Listening to the voices of autistic students with Dr Finbar Horgan
To understand student needs, it’s essential that we give space for autistic students to share their experiences. On the latest podcast, Dr Finbar Horgan talks about his research, which gave space to the student voice.
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 Dr Finn Marhorgan, a researcher who's one-stop shop manager with as I Am, I wanted to catch up about the research he conducted for his PhD. He focused on working with students to find out about their education experiences from their perspective. His methods are brilliant. His findings are so important. Whether you're an educator, parent or researcher, I think there's something in this chat that you'll find fascinating. I hope you enjoy it. So, bimber, thank you so much for joining us on the podcast, and I said I wanted to start by asking can you give us an overview of your research?
Speaker 2:yeah, no problem, kat. Um, actually I was almost dreading this question. I think it's one of the hardest questions when somebody says, tell us an overview or give us an elevator pitch. Um, no, but absolutely I'm happy to do it. Actually, I think the research in essence is is quite simple in terms of what I set happy to do it. Actually, I think the research in essence is quite simple in terms of what I set out to do.
Speaker 2:So, for context, my research, my PhD research, is entitled Voices of Inclusion and essentially it focused on the lived education experiences of 19 autistic teenagers that are attending mainstream second level schools in Ireland. So really all I wanted to do was get an insight or an understanding of what that experience is, what are the barriers, what are the facilitators to inclusion in these settings. And I suppose I did it through a qualitative phenomenological study. 19 teenagers participated, autistic teenagers and I think a total of 48 kind of adapted semi-structured interviews were conducted in total and I suppose, in relation to the findings, students really opened up about all aspects of their school experience. It was really really phenomenal, you know, from their transition to secondary school, to their social relationships, to how they feel, you know, in relation to where they understood by the adults supporting them, their relationships with SNAs, their ambitions for the future, their, I suppose, connection to the environment and the barriers that exist there, so really about every aspect you could possibly think of. So that's, I think, a good summary of it.
Speaker 1:Perfect, yeah, and it's gorgeous that they were so open to sharing. I think that speaks a lot to the environment that you set up in your research, which we will get to, because I'm very interested in that but I'd love to know what made you sort of initially want to focus on autistic students yeah, and this part is well, I think it's quite interesting, um, so I'll go back to kind of how I first got into this kind of area, maybe, um, as such.
Speaker 2:So I suppose and you probably know this, but originally I'm an RNID, so I'm a registered nurse in intellectual disabilities and I would have studied in UL in a four-year degree course for that and during that kind of work, through college, on placement and subsequently working in social care and residential services, I would have worked predominantly with adults with intellectual disabilities Now, many of whom would have been members of the autistic community as well. Um, but actually my experience, I suppose working with the autistic community actually comes from a different, a slightly different experience, and so I think we were in second year of university doing our nursing degree down in limerick and a rep from camp america came in and I think maybe there's listeners that might be listening to this that will have this shared experience as well, because I know many people get that J1 visa at around that time and head off when they're studying, and they came in and basically told us about opportunities to go over to America to work on a summer camp, but specifically when they came into us knowing that we were a group of students that were specifically focused on working with people with intellectual disabilities, and they had suggested that we could go down the route of working at campus for people with intellectual disability or disabilities in a broader sense, and so I just thought it was a fantastic opportunity to get that experience. You know, you probably know yourself, working in kind of social residential settings, you don't get a huge amount of opportunity to actually work with children and young people, and so up to that point it predominantly worked with adults, and I said this is a good opportunity to kind of work with younger people as well and also, for a bit of fun, to go over to America. Yeah, exactly. So I was very fortunate to be hired by a camp called Camp Northwood and unfortunately it's not running anymore. The owner's retired.
Speaker 2:It was a family-run business, but it was specifically for autistic children and young people and it was on a big lake in upstate New York, in the Adirondacks unbelievable location. So I would have started there as a camp counsellor and I worked, for I think we were there for eight weeks, including a week of training, so the young people would come for seven weeks. You know no mom or dad, you know so some cases quite high levels of support. So really it was kind of a baptism of fire maybe in the area in many ways, but I learned so much and I came away with there with such a sense of really what I wanted to do, and it was predominantly to work with autistic people and young autistic people if possible. And I remember coming back from that first summer and, um, uh, the first thing I said to my parents they picked me up at the airport was that I was, I was going back again for another year, you know, and and I actually returned for five summers, uh, to New York to work at Camp Northwood with those group of young people.
Speaker 2:Now I suppose, where does the education piece tie in? The reality was and I suppose I only came to realise this maybe as I kind of progressed there into kind of a team leader, you know, in kind of my third, fourth and fifth year, and also kind of a member of the administration staff in that fourth and fifth year as well, and so I was working much more closely with students and particularly during, you know, times where they needed a little bit of extra support, and what I realized, I suppose, over those years from having conversations with these young people. We always used to and actually the camp director used to flag this at the start of the year these kind of the last couple of weeks at camp used to call the doldrums, because staff would be a little bit tired, you know, after five or six weeks. But also there'd be kind of a rise in maybe the anxiety levels among kind of the young people we were working with. And again, it was only through experience and actually you know, getting to know the students or the young people quite closely, that a lot of it was related to okay, okay, number one there was a big transition coming and that was the transition back to school and actually for many of the students we were supporting they would have had quite negative school experiences.
Speaker 2:Now, this is the American educational context but it's still relevant because that's what kind of sparked my interest.
Speaker 2:So I would have worked closely with young people who were, would have disclosed that they were extremely socially isolated in school, didn't have any friends. In some cases we worked with students that you know experienced extremely high levels and serious instances of bullying at school. A lot of students just felt and young people just felt a little bit out of place. Some of them were coming to us from a mainstream camp placement that maybe wasn't successful and maybe had been quite negative. So our job really I thought it was about having fun, but really it was about building up students and their confidence and kind of preparing them for that step back to school. So I guess my interest then and why I wanted to focus on this was after my five years it became a really passionate area because I said, well, if this is the case here, it's there's likely similar things going on in the Irish context and you know, looking for kind of information or research. I just found it fairly fairly thin, um, so that's really where that kind of comes from.
Speaker 1:It was really actually working directly with young people that were actually experiencing some of these things that I ended up looking at and researching in the Irish context that's fascinating and I suppose it really kind of lends itself down to the, the methods that you you know your focus was very much on putting the student voice at the centre of what you were doing and obviously, from working directly with those students that you were working with while you were away, you kind of learned the importance of that. Why do you think that's where student voice is so, so important to include in research?
Speaker 2:Yeah, I mean there's so many reasons. I mean, first of all, like we know, uh, student voice certainly isn't a new concept. It's been around for quite a while. The benefits of eliciting the voices of young people and students in educational context is extremely well established in the literature and we know, for example, that child participation plays an important role in protecting children from harm, building resilience, empowering children, and there's evidence there to suggest that engaging the voices of students has the potential to increase motivation and engagement to school, foster a more democratic school ethos, improve student teacher relationships, etc. Etc. Student motivation, engagement in learning, school connectedness you know they're all coming from the research there, so we know why it's important to engage students. Also, you know students and teachers see the classroom and schools in a very different way and it's important that we include, I suppose, all those perspectives and voices. So I suppose that's kind of the rationale for student voice, maybe in a general sense, but perhaps more specifically then, if we look at I mean, the kind of current climate in terms of how we support, maybe, autistic students here in Ireland, I mean there's been a lot of change in the last 10 years.
Speaker 2:You know we're currently estimating that about 3.38% of people are autistic. I know that's. The estimate is slightly higher in northern ireland. I think it's around five percent, cat there, correct me if I'm wrong. Um, we also have a situation in ireland where we've kind of heavily progressed or relied on, you know, expanding special classes, particularly autism classes, in Irish mainstream schools. Actually we've seen I think the figure is and I hope I'm getting this right a 584% growth in the last 10 years of these types of classes. But we are progressing this and there's a lot of merit to that and it can be quite successful for some students.
Speaker 2:But we haven't really stopped and asked and spoken to students, autistic students about their experiences, because they're the ones that are experiencing this say policy.
Speaker 2:But there's very little evidence of us actually engaging those students around it and on top of that there is not much.
Speaker 2:But there is international empirical research that has suggested a lot from the uk actually some some australian research as well that autistic students, compared to their mainstream uh peers or their non-autistic peers, are more likely to be bullied experience peer rejection, be socially isolated, tend to be bullied experience peer rejection, be socially isolated. Tend to be subject to poor mental health outcomes, more likely to experience school distress, often leading to attendance difficulties. There was a recent piece of research done in the UK looking at this idea of school distress, which tends to underpin kind of school attendance difficulties, and I believe they surveyed over 900 parents of children that were experiencing or identified as experiencing school distress and over 90 percent of those students were neurodivergent and of that 83 percent were autistic. So there are specific reasons why there there needs to be this focus and there needs to be dialogue and we need to be doing more research in this area. So there, I suppose, is the student voice rationale, but also why there's a rationale, and focusing perhaps on autistic student voice in particular.
Speaker 1:It makes a huge amount of sense. And why do you think I'm assuming now? I'm assuming there has been a reluctance to include student voice, and why do you think that reluctance has been?
Speaker 2:Yeah, I don't think there's one definitive answer. I think there's kind of different contributing factors to this and I suppose I'll take it back to theory for a minute. So you know, within my own thesis I would have written a little bit about this idea of epistemic injustice and disability research. So again, this isn't really autistic student voice specific, but I'll kind of bring it back to that as much as I can. So the idea of epistemic injustice, within that there's kind of two key injustices. So one is testimonial injustice and one is hermeneutic. So if you look at testimonial injustice, that describes when an individual's account or their testimony is delegitimized or given less credibility due to their identity. So for example, if somebody has an intellectual disability, is autistic, is a disabled person, et cetera, et cetera, and that then is compounded by the prejudices, maybe a bias held by the audience or the person listening or the researcher, for example, in relation to their perceived idea of the person's capacity or ability to, you know, give their views and opinions on a specific topic. And that might sound very kind of theory driven but it does relate to a kind of wider problem, I suppose within autism research and I know you've had Dr Damien Milton on the podcast previously and many more who have pointed this out, that actually we've essentially built a knowledge base from a research perspective on autism that is largely informed by the perspectives of non-autistic people, so we've relied on those and maybe part of that is due to this kind of testimonial injustice I suppose hermeneutic injustice is probably a little bit more practical in terms of that really is talking about when, and there is a gap in the interpretive resources or understanding on the part of the listener which can place the person, I suppose, at an unfair disadvantage. So what I mean about that is about the researcher's knowledge of how to effectively engage an autistic person in a research project.
Speaker 2:So for me I had to consider things like well, many of the students that I might talk to may have sensory processing differences. They may have preferences when it comes to where and how they want to be interviewed. They may prefer information in a multitude of different ways. If I as the researcher didn't know any of that, then I'm excluding people from participating in this type of research and I know we'll come back to kind of the steps I took to kind of make sure that as many students could participate as possible. But again, that's the kind of hermeneutics side of things, like even for me, when I was looking at doing this and I was reading, you know, broadly in the literature. You know how am I going to go about this? There's no roadmap to this.
Speaker 2:You know, I found myself drawing on kind of you know, research with very young children. You know, from the kind of mosaic approach I found myself looking at you know kind of participatory methods that had been used with university students in terms of like kind of like different ways of conducting interviews. I looked at drawing active, but they were coming from all different places and different cohorts and I was trying to pull it all in and say, well, I think this might work and I think this might work. I think this is a more inclusive approach. Um, but I suppose those two kind of injustices can contribute to that. So that's kind of one kind of thing I would have looked at and tried to relate back to maybe as a rationale why autistic young people or autistic people in general and why their voices are generally absent. Things are changing a little bit. Kat and I. We do definitely see that there's a lot more participatory and autistic led research out there, absolutely, and I think that's only going to grow. But that is possibly a reason why in the past we've relied on, I suppose, the voices of non-autistic people.
Speaker 2:There's also other issues there, I suppose, if we come back to student voice. So Laura Lundy, who you know is fantastic in this area and I suppose, the leading really international expert around children's rights, in particular in relation to Article 12, you know, the right heard and the right to uh, to have a voice and things like that as well um, so she would have talked about kind of concerns around, or skepticism, I suppose, around engaging the voices of young people, so student voice or learner voice in the in the school setting, and again that kind of. We can relate that to testimony and justice. Laura lundy would talk about kind of skepticism on behalf of the adult in relation to the child's capacity to actually have an input in decision making, a worry from, maybe, adults that you know giving a child control or input will actually undermine their authority in the classroom and also that engaging students in kind of dialogue or in student voice work can be time consuming and off-putting and that that effort could be spent better in different ways. And that's from one of lundy's uh publications uh, from 2007, I believe. So there there's kind of some different uh kind of pieces of theory that I would have kind of linked to that.
Speaker 2:I suppose core issue why don't we generally see the voices of autistic young people in research, and it would have been highlighted as well. I would have done a systematic review of the literature as part of this research project. That was kind of step one and I think all in all I identified 33 studies that had directly elicited the voice of at least one autistic student about their educational experiences. 33 studies internationally is not a lot. Within that over 20. So the majority were multi-informant and really the voices of students were an add-on. I felt in some cases so that kind of tokenistic okay, we're looking at the voices of students were an add-on. I felt in some cases so that kind of tokenistic okay, we're looking at the voices of autistic students. But we asked 10 teachers and one student or two students do you know what I'm trying to say? So you know, I was kind of finding that out and navigating that and how I was kind of, in my own research, going to make sure that I didn't fall into that trap.
Speaker 1:It's fascinating that there is that there was so little research that fit what you were looking for, and then also that you had to look in so many different places to find the route that you were going to take, and I think it's a really good insight into research and how research works. Um, as much as anything, yeah, it's so fascinating, um, and you mentioned then sort of the the steps that you had to take to sort of that you wanted to take to to make sure that your students could be included and comfortable in the ways that they wanted to participate. So what were the steps that you took to to make your work accessible?
Speaker 2:yeah, and just to say from and you mentioned there from a research point of view for any kind of maybe researchers that might be listening to this or starting out on the process, you know my ideas kept changing and evolving, particularly at the initial stages. You know around how I was going to do this because, again, there are pockets of good examples. I drew heavily on the research of craig goodall and in northern ireland who done a lot of participatory work and subsequently wrote a book about the education experiences of autistic young people in alternative education provision and and that was a real that kind of sparked my kind of interest in the methods around this and so he would have used a lot of participatory methods and things like that in his own research and I just thought it was a great example. But I also kind of had to find my own way and kind of have a look more broadly. Okay, but even in terms of recruiting, how do I go about that? So, really, starting at that starting point, One of the first things I would have done is I would have engaged a group of autistic young people four autistic young people where I would have presented kind of ideas around questions and topics that I was going to ask as part of the research, and those questions and topics would have been informed by the systematic review, largely so, what kind of topics are coming up as issues and barriers and facilitators from that piece of work? Topics or coming up as issues and barriers and facilitators from that piece of work? So I would have kind of leveraged that and engaged them and showed them what I was thinking about and they would have offered they offered a whole range of feedback on it which I was delighted about. So, for example, they wanted, you know more visuals if I was using text-based questions and they wanted, they wanted to know that students didn't have to talk about all the topics but could choose what they were interested in and that's where the conversation would start. That was actually really important. I might come back to that because you know there might be a. In traditional research methods you kind of go through the questions and the topics quite systematically, but you know, I really wanted to be conversational and I wanted them to feel comfortable like it wasn't an interrogation or you know, and because I, you know, wasn't, you know, I was essentially a stranger, I suppose, despite efforts made to meet the students on multiple occasions, and I'll talk about that in a second as well. They also said that you know, know well, some students might have difficulty maybe responding or finding the words for something, so could they write or could they draw their answer as well. So all those things were taken on board.
Speaker 2:When it came to, when I got some schools to sign up that were interested in being involved, I created a kind of an information pack Seems quite simple, but actually was very, very useful and that was to support potential participants whose parents would have given their consent to make an informed decision or choice in regards to whether they wanted to participate or not. That would have included a visual guide of the research process, you know, with a picture of me smiling on the front. This is the researcher. This is my name. This is what we're going to do, broken down again using text and visuals, kind of using guidance that would exist out there in relation to creating visual guides properly a child-friendly, ascent form, a copy of all of the topics that I would have liked to talk about, with some sample questions, and also a kind of an even more simplified or plain English version of those questions as well. For some that would have preferred the communication to be in that kind of a format.
Speaker 2:I then visited each school that had given me consent to to be there and I met those students informally in a group setting. So any students that had kind of gave given verbal I suppose assent and their parents had given written consent. Um, I met them. I gave a short visual presentation again around the topics. Um, they already had the pack, so they had seen the questions. So we went through the questions and topics again. They had a look at some of the equipment I was going to bring, so the recorder, uh, which they were very excited about.
Speaker 2:Um, and just a chance to ask any questions very informally, because I wanted to leave there with a sense of, okay, I know that the students that are interested to kind of understand the process, process, and also that they're comfortable and familiar with me, they could be interested. But maybe they said actually, do you know what? This finberg guy, I'm not sure about him, I don't want to, and that's fine and it was completely their choice. Um, so that was the kind of the initial steps when it came to interviewing. Then there was, I suppose, a few more steps. So you know, I I made sure that the interviews were conducted in a familiar space, so it was always in the school. In I think two of the schools it was in a sensory or quiet space and in the other two it was actually in an in an autism classroom or an empty classroom in the autism, say, hub or base. So you know it was somewhere that was always familiar to the student.
Speaker 2:Um, what when? The students knew when I was coming to the school, because I communicated that with their teachers, but I made it very clear from the outset that they didn't have to come and talk to me on any given day. I would make myself available in the schools and I went to each school to interview three times and students could engage or they might choose not to, and there was no expectation around that a student could come in and do an interview when I first come to visit for 20 minutes and this would have happened and said, no, I'm happy. Now I've said what I needed to say. I had other students that did three 45 to 50 minute interviews and if I could have kept returning and they would have kept giving their input, but it was about the choice kind of around. They could choose whether or not they wanted to engage and how much they wanted to engage and what they wanted to talk about, if that makes sense.
Speaker 2:Um, there was also some other little bits. When they're actually in the session. They had had some visual cue cards. You know, pause, break, stop that they could use if they felt that they needed a break. We did little icebreaker activities in the first session. They could choose their pseudonym if they wanted to do that. They could pick it out of a hat or choose one, or they could interview me about a topic of their interest for 10 minutes if they wanted to use the recorder.
Speaker 2:It was just about creating that space where students felt comfortable, and also because I had been there and met them informally and I was coming back on multiple occasions. I'm not saying that I became familiar to them, but I was building somewhat of a rapport as much as I could in terms of being an outsider to that school. You know I wasn't just coming and interviewing and then they'd never see me again. You know that that certainly wasn't the case and actually subsequently so after I returned to schools and collected all those interviews the 48 that I'd done in total I did return, actually one last time about a year later when I had some preliminary findings. So I created, I suppose, an easy read version of the findings and we met again kind of informally as a group.
Speaker 2:There was no expectation that students had to come to this again, so some did and some didn't, and that was fine. Some had actually aged out and you know I contacted their teacher, who would have forwarded on the information, and I said I could make myself available or is more than happy to have a chat, you know, online or over the phone, um. But it was just an opportunity for students to kind of see if, if they felt that their voices were reflected within the kind of findings, to see if they agreed with them. And you know in pretty much all cases they did so. But it was just a nice way of kind of saying now we're at this point and coming back and giving that further opportunity, I suppose, to have a discussion. Um. So sorry, kat, I know I've been talking for a while. There's there's quite a lot in there, but you know there was a lot of thinking and thought and planning that had to go into this, I suppose, and my method section of the thesis is quite large because I go into detail about all of this.
Speaker 1:I mean it's it's like the gold standard, like I work a lot with researchers and I want them all to listen to this podcast now because, like you, you had to take so many steps to do what you wanted to do, but it all makes so much sense and it all makes the young person that you're working with so much more comfortable. It gives them control of the situation, and then that means that what you're finding is much more likely to be their lived experience. So it's so important to take all those steps, and I'm so impressed with all the steps that you took. It's absolutely fantastic.
Speaker 2:Thanks, kat. Yeah, that really came from conversations that would have had one of my supervisors, dr Paula Kennedy-Flynn, and she would talk about the learner voice space and about creating that space and that dialogue and how important that is, and would link that to what we call authentic listening, so kind of what you were saying. There I could kind of stand over my findings and say, you know, these are authentic because I went through all these and I went back and students agreed and maybe disagreed or wanted to change some things and I listened to all of that. So it's a more authentic way, I think, of doing it and, as I said, I would have drawn a lot of Paula's work there in terms of the learner voice space and Lundy's model of participation and things as well.
Speaker 1:Fascinating. Now I know you did a doctorate worth of research, so there's a lot in there. So I'm wondering what you found. But I don't want to keep you all day.
Speaker 2:So so I knew you were going to have something similar to this, so I just chose kind of maybe three or four, I think four topics and I've written down some notes to keep me on track with this and that I thought were kind of interesting and relevant and really practical. And some of it might seem a little obvious, but actually remember that this is coming from the students themselves and not teachers and not parents. This is coming from what students wanted to discuss, what they were passionate about talking about um. So as I said at the outset, I mean nearly every aspect of school life is covered within the findings of the thesis. You know, I think I had something like 400 pages of that I had to analyze and I think the whole section in the thesis is about 70 or 80 pages of findings. That's quite dense um, but I'll have a look at some of the main ones here, kind of briefly talk through kind of the findings within those headings. So I think one of the important ones that we look at or that we talk about is the sensory environment, um. It's one of the things that students spoke quite passionately about uh and at length about uh, particularly in relation to the barriers of the challenges um around spaces in the school predominantly, which centered around three spaces the canteen area or the kind of general purpose area, the hallways, which were described by students one student described them as menacing, which I thought was a lovely word. Another student said that the hallways were like a thin piece of uncooked spaghetti, and so you know fantastic insights there and also the bathrooms, which hadn't really come up in the literature previously. But I'm going to come back to that and why that's important in relation to those challenges. What I got the sense from for students and that there was very little accommodations or supports in place in terms of navigating these challenging spaces. To be quite honest, you know, one student, in relation to the hallways, told me that you know to avoid that kind of rush and again this is all related to sensory processing differences, you know, which we know is a big aspect of autistic experience. So it might seem quite obvious, but actually it's really important that be considerate is because there was I didn't really see any examples of supports or accommodations in place.
Speaker 2:You know, one student told me that in order to avoid that rush, he would spend the last 10 minutes kind of distracted in class because he's in his head. He was pre-planning his route to the next classroom and thinking how can I get there as quick as possible without you know, while trying to avoid the rush? And he said he had little ways of going and different ways of going. Um, in relation to the mainstream bathrooms, one student was saying that you know, um, the bathrooms, you know, students, light are there, they can be quite loud, it can be very unpredictable, they're not very supervised. So they disclosed to me that they and they were fifth year student uh, never used the bathroom during the school day. You know, uh, you can see the challenge or the issue with that for that student. And I mean, you know there's some very easy fixes around all this stuff.
Speaker 2:I like to think you know, um, there was another student who was saying you know, at lunchtime I avoid the canteen, I just the noise is just not for me. And again, I think they were a fifth or sixth year student and he would have said that he spent every lunchtime in the autism class on his own eating his lunch. Um, so, a real sense of self-isolation there, I suppose. And it's not. It's not that the student didn't want to be with their friends, but you, you know, from a support perspective and a sensory perspective it just wasn't possible. There wasn't many alternatives other than just staying in the autism class.
Speaker 2:Now there are the challenges and they did speak about the positive spaces and I'm sure you can almost guess what it's going to be. But the importance of safe, quiet spaces, I mean mean it came across so strongly. One of the questions I would ask you know what's your favorite space in school? And even the 17 and 18 year old students would have said the quiet space. You know, because I think there's a notion that you know these sensory spaces are for very young kids or anything. But actually it was no, it was a dedicated quiet space that a student knew that if they were overwhelmed or needed a break or needed to reflect, as one student said, which I thought was lovely that they could do that and access a dedicated, dedicated space for that. It wasn't always a sense room and one school had a sun room, another had a prayer room, but it kind of doubled as as that quiet space for a student, a library area, um, and it came across so strongly the importance of having those.
Speaker 2:And all four schools did have supports in place, but in one school there was maybe a little bit of an issue where one student and it was a fantastic insight said well, we have these sensory pods in my school but you have to schedule to use them and they're padlocked. And they brought up a beautiful point and I think this is important for schools and teachers and snas and anyone to know. She said how am I supposed to know that I'm going to be overwhelmed next tuesday morning at 10 o'clock, you know, and it's so practical and obvious, but that was a real barrier there. So they're the kind of key ones around the sensory environment and so even just looking at that one little piece, there is quite a lot of learning in there, you know.
Speaker 2:Um, and again, you know, it's quite important for schools, I think, to to know this kind of stuff as well. When it comes to navigating, you know what is. You know, if we think about mainstream school for neurotypical or non-autistic people, it's a very sensorily demanding environment, like bells and crowds and canteens and halls and you know. But again, the evidence of, I suppose, reasonable accommodation support was fairly thin, I thought, and that was the one thing that was kind of a little bit concerning to me.
Speaker 1:It's not massive tweaks either that would be needed to to be made here.
Speaker 2:It isn't, it's small things to just, you know, like, give that student that five minutes where he can navigate when he needs to, a little bit before everyone else or a little bit after everyone else and they'd know that if they spoke to the students you know and asked them and were able to identify these problems I mean, in relation to the bathroom one the student that that didn't go to bathroom I said, well, is there any alternatives? They said, well, they were a student that was enrolled in mainstream, so not in an autism class, but there was an autism class in the school and they said, well, they have single occupancy bathrooms in the autism class, but there was an autism class in the school and they said, well, they have single occupancy bathrooms in the autism class, but I'm not sure I can use them. But again, if you know, and again a conversation I'm sure the school would put in, yeah, of course you can use them. You're not going to the bathroom during school hours.
Speaker 2:That is obviously a health issue or could lead to um, and that is a very simple fix. But perhaps the school wasn't aware that the student maybe didn't feel that they could say that. But that's again the importance of kind of strong student-teacher relationships, you know, because the student is more likely to disclose some of those difficulties or challenges or issues to somebody that they have a strong and positive relationship with. Um, so, yeah, I absolutely agree. Some of these things are quite, you know, maybe obvious is the wrong word, but again, hearing them, I think from the student point of view is really important, that's it essential.
Speaker 2:Um, transitions was another thing that came across. Uh, students spoke about kind of big transitions in school. Um, what I didn't expect actually is students spoke about the primary school experiences. Obviously that wasn't kind of a question or an aim of the this research, but because we were talking about the transition from primary to secondary, a lot of school, a lot of students said to me actually hold on, I want to tell you about my primary school experience and I'll come back to that because I know you might ask a question on where. Next primary school experiences is a big one. I'll come back to that. And the reason is six I think about six students spoke about their primary school and five of them had overwhelmingly negative things to say, which I was not expecting at all, largely in relation to kind of feeling understood, to be honest, and and we can come back to that a little bit later um, so they spoke about transitions, primarily the primary, post primaryprimary and then the outer school, in relation to primary and post-primary.
Speaker 2:You know, as you can imagine, a lot of students did describe it as a very big change bigger school, more people. A lot of students found it difficult to make friends initially. One of the reasons for that is that a lot of them were going to schools maybe that were a little bit, maybe outside their area or their primary school friends would have went elsewhere, and so it did kind of come across that that period of of transition was a difficult time for students socially because they found a little bit hard to kind of make friends or, you know, because they had that kind of core group and then that was all of a sudden kind of disrupted or gone or and I'll come back to friendships because I'll talk about social experiences next and finally, you know, very briefly, some findings in relation to that, um, but again, in relation to supporting that very big transition, because again, like you know, all the evidence out there suggests this can be a difficulty for autistic students and you know, even good practice guidance from department of education would talk about the importance of supported transitions and very students identified very little support outside of your standard. I visited the school on an open day, um, some students said that they did have an opportunity to come back on a quieter day or have further visits, which they felt were actually positive and just gave them another chance. Um, another student said that, well, when we got there. Um, we spent the first week in the autism class and we got to know our friends and our snas and our teachers and our timetable and we just kind of stayed in the class and we, you know, spent kind of a week settling in and they felt that was very positive.
Speaker 2:But outside of that there was very little. And it's so important because one student disclosed and opened up about a very, very difficult experience they have they had around this transition period. So essentially they described um becoming so overwhelmed at the prospect of this transition that they actually ended up hospitalized with a mental health condition initially and subsequent to that were diagnosed as autistic. But it was actually around that transition from primary to secondary that triggered all of that, yeah, those difficulties. So we can't underestimate the importance of supporting students, even students that may not. This student wasn't diagnosed, so maybe there was that. Well, you know they'd be fine, you know what I'm trying to say, or they'd be grand, they're just a bit anxious. But actually the extreme end of things, I mean it could have devastating consequences. And again, I just felt the support wasn't really there. I remember one student identified. Oh well, I did a program in the local town about transitioning.
Speaker 2:When I was in primary school I said, oh, can you tell me about that? She said I actually can't remember anything about it. So it's about meaningful support as well and practical support, um, they also spoke about some of the older students would have spoke about that transition out of school which was approaching, um, and I suppose the interesting finding here that there was a massive contrast between students that were doing the traditional Leaving Cert pathway and those doing the Leaving Cert Applied, which is another option. Within the Leaving Cert Applied there's vocational preparation and guidance module and some of the students that I interviewed would have been on the LCA track were able to talk to me fairly in depth about pathways to further education. They all had kind of plans because of this VPG module.
Speaker 2:You know well, I know that the local College of Further Education has a course in this and I know that if I do that for a year I can get into this college through this course and I had great awareness Contrast it with students that were on the traditional Leaving Cert route. You know well, I had one meeting with the guidance counsellor and other than that I've just been having conversations with my parents. So there was a kind of a disparity there, I guess, in the support that those groups were receiving, you know, even though a lot of them would have really benefited from that more focused support. Again, it's a huge transition that out-of-school transition, and we know that a lot of neurodivergent and autistic people will need, you know, support around that. Um, and again, I just felt inconsistent um, so that was the kind of findings in relation to transitions there. So quite a lot.
Speaker 1:Huge man. Yeah, that is really really fascinating.
Speaker 2:I always think, kat, that, like you, could write a thesis on any one of these topics. So, because this was a lived experience and students could talk about anything they really did and they're really in depth about these things. Can I move on to social experiences? This is an important one. Again, I'll be as brief as I can on these because, again, I'm just trying to give an overview of some of the main findings, but there's just so many um. So, in relation to social experiences, you know I would have had a whole topic around kind of friends and friendships, um, for students to kind of talk about that, and peer relationships, and actually it was one of the topics that a lot of students opted to talk about and I have to say that most students that I worked with would have described having a network of friends, some of them maybe a small network of friends, one of them bigger. It was kind of you know, it was mixed. Essentially, what they all had in common was they all basically suggested and spoke about how crucial it was to have friends at school. There was one or two students that experienced attendance difficulties at different times and one of them said to me if it wasn't for my friends I wouldn't have come back to school. It's the only reason I come in is knowing that I'll see my friends. So again, the importance, and that would be fairly well established in the literature anyway, but again, hearing that from the students and getting that input is really, really important.
Speaker 2:I think about two students would have disclosed that they would have had no friends at all. One of those students was a second year student but one of them was a fifth year student and described never making a friend at school and felt very socially isolated at school. Um, and felt very socially isolated one. The student in fifth year would have said to me well, you know, he had a, I suppose, a kind of a, a spin or a special or focused interest in dragons and he, one of the first things he done when I met him was show me his sketchbook of all these in intricate, beautifully drawn sketches of dragons, real, detailed, fascinating. But one thing he said to me when we were talking about friendships he's like, the one thing I found he said is that nobody really has the same interests as me. So I find it very, very hard to make friends and you know, and that kind of stuck with me a little bit I felt, you know, because he had this fantastic skill and interest but nobody seemed to share that, so he felt very isolated because of that.
Speaker 2:Some students talked about bullying. I have to say it wasn't. It didn't come across as prevalent, as you might see in some of the international research around it, which was a positive I think. However, I do have to caveat that by saying because it's a sensitive topic and because I was essentially unfamiliar to those students, maybe they felt they didn't, they couldn't disclose that. So I'm not saying that you know that maybe it was as prevalent and maybe I just they weren't comfortable to disclose that. But name calling was something that did seem to happen and, like you'd like to think that we're at a stage where we're moving past that, but I mean terms that have been used and are very charged in relation to disability and autism were leveraged or levelled at students. Some of them said it was quite often.
Speaker 2:One student told me they started being bullied at the age of eight or nine, in primary school, and it has continued into secondary school. Yeah, one student told me that because of the instance of bullying in the past, they found attending school daily extremely difficult. From the second they woke up, it was difficult for them to get into school and it was all around anxiety related to a previous experience of bullying. It didn't really go into much detail and of course, I wasn't because it was up to the students to talk to me about this. I wasn't pushing, or was up to the students to talk to me about this. I wasn't pushing or anything like that around this. So, you know, if they were comfortable to tell me these little instances, that's fine, um, but there was an impact there, you know.
Speaker 2:And bullying I mean again, we notice from the literature it's so, so, uh, prevalent, unfortunately among neurodivergent students, again, and autistic students, um. So schools really need to be aware of that and really need to, you know, have a bit of a focus on that as well. You know, maybe not just bullying in terms of a kind of general sense, but a more focused approach, you know, for students that may be, uh, marginalized. So not just autistic students, but anyone that might be a little bit more vulnerable to bullying. I think the only kind of support there was friends to kind of stick up for you A couple of students said that but also that strong student-teacher relationship, because other students did tell me well, you know, if I was bullied I would tell Mrs X or Mr, because I know them really well and I'd be comfortable telling me and they'd support me and they'd help me, you know. So, again, the importance of having those relationships came across. I think it speaks so much to how comfortable.
Speaker 1:You made the students that you were talking to that the conversation could go in so many different directions and you could learn so much about so many different topics.
Speaker 2:Yeah, and the list goes on and on, as they say. Um, one last thing I might mention in I was going to talk about teachers and snas, but I'm just going to focus on snas. Um, when I asked students kind of to tell me about the adults that they work with in school, and we had some amazing conversations, um, you know, really, really, students really wanted to talk about their teachers and snas, um, the good, the bad and the ugly, as I, as I say what I'm talking about this. But there was one finding that I think is really, really important. That came in relation to snas, and it's important because, actually, a number of students highlighted this. Um, so the first thing to say is that when I asked about snas, or if a student, uh, was working with an snas some weren't, obviously, and some were One of the first things they all said was I love my SNA.
Speaker 2:Another student said they're crucial to my experience, essentially. Another student said my relationship with my SNA is like a mother-son relationship, and I think that really highlights that kind of pastoral and caring support. But, on the flip side, a number of students talked about the visibility of this adult support and how it was a little bit of a problem, and what I mean by that is some students said you know, when I came to this school, all of a sudden there was an adult coming with me to my mainstream classes and sitting beside me. There was nobody else in class that had an adult sitting beside them. So what came across is and they're teenagers. I mean, we have to remind ourselves of that. You know, when I was a teenager in school, it's the last thing I would have wanted, you know.
Speaker 2:So, although it was a crucial support and so valuable and really critical to many of the students' actual success at school and support at school, there is the other side, that there is maybe more subtle and skillful ways of providing that support. But the key thing is that students were never asked about that support, because one of the students said to me you know, I don't think I need an sma, or at least they were taught reflecting and they were saying I didn't need an sma, but they didn't fail, like they had an opportunity to actually say that um, or or weren't asked. You know, you have this support available. How would you like it to look or how would you like it to work? And you know that kind of student input.
Speaker 2:I'm talking about it in the context of sna, but actually it's it's a wider thing, isn't it really?
Speaker 2:In terms of having an input into support and what it looks like being able to identify your own support needs and or at least being involved in that conversation in a meaningful way.
Speaker 2:Others were saying to me you know, um, yeah, I have an sna and I remember going to class once and they sat beside me and they started taking the notes, but I can take my own notes, so I had no idea why that.
Speaker 2:So, again, they didn't even it wasn't even explained to them the support or why this was or what or what they were doing, and I just found that, um, a little bit concerning because I said there really needs to be that input. And I guess, again, a kind of an example of where this could lead to is one student said well, this whole thing ended up with me having a shouting match with an SNA in the autism class one day because I just couldn't take it anymore, and they were referencing the fact that they were essentially felt like they were being followed or surveilled as they went to classes and it's just, it's again, it something it has come up in bits, I think two studies out of my 33, there was a little bit about the kind of support role and the visibility of that, but it really came across strongly in this from students you know.
Speaker 1:It's fascinating, speak to the importance of having those conversations and giving space to the young person to just share whatever it is that they're thinking and whatever it is that they're feeling, and giving them room to sort of safely explore all of that. Because I mean, I know, even thinking of my own school experience, there are things that you know now as an old adult, I'm sort of making sense of things that happened to me in school and I just didn't have the time or the space or the the understanding then to be able to sort of figure things out. So to be able to have that conversation and support young people through that is so, so important, I think, absolutely yeah, couldn't agree more where do you think research needs to go next?
Speaker 2:well, there needs to be more of it. First and foremost, you know, any kind of research or policy initiatives, we need to be including student voice in that in a meaningful way, and that includes autistic student voice, disabled student voice, et cetera, et cetera, all kinds of student voice in all perspectives, because they all matter, they're all valid and fundamentally, it's the student's right to have an input on those discussions when they impact them directly. So we can't forget that and there needs to be more of it. Certainly, um, in terms of specifically I mentioned primary school experiences um, the evidence, or the international kind of evidence around secondary experience is thin, but it's even thinner when it comes to primary school experiences, and what I learned from mine, from those kind of six students that spoke about primary school, is that there is definitely a need for a discussion around that, whether it's with you know adults in hindsight, or you know secondary school students, or with students that are actively in primary schools. I think it could be really valuable. I think we might be missing a piece there. There was a colleague of mine, dr Lisa Ward in DCU, who would have done her ED around this topic as well. So I think there's going to be more kind of publications around that and I'm not sure if their thesis is quite available yet it may be under embargo.
Speaker 2:But that really is an important step, I think, in piece of research that's looking at autistic primary school experiences.
Speaker 2:But I think there needs to be more as well and you could also kind of delve into in more detail any one of those topics I talked about, because I left it open and mine was phenomenological, so lived experience of school. There were so many different topics that came up but you could actively just focus on one of those topics. So I briefly mentioned bullying. But there is probably a piece of work um, neil humphrey wendy signs in the uk would have done a lot of work around kind of prevalence of bullying among autistic students in the uk again, not really much over here, um, so I think there's probably a need for focused um.
Speaker 2:I think there's a need to kind of have a look at well-being and connected to kind of belonging and social connectedness, uh, in school as well. Look, there's there's so much really that we could do um, and I like to think that that my research is kind of maybe uh, giving the kind of overview of a lot of different things, but there's probably space for more focused research in a number of areas you know related to school experience. If that makes sense, yeah, absolutely.
Speaker 1:Yeah, and, as I always say, it's an exciting time, I think, because the way that we're reframing how we understand autistic experience will be so rich, and I think your work is such a beautiful example of that. Then you'll be delighted to hear my very last question for you what have you learned from working with autistic people?
Speaker 2:Yeah, I actually take back what I said at the beginning.
Speaker 2:I think this is the hardest question because the answer is so much and I up in my conversations kind of challenged, I guess, preconceived notions I would have had as a non-autistic person and my own experience and contrasting that and seeing how different an autistic school experience might be and the things that I didn't have to consider but autistic students have to consider and contend with on a daily basis.
Speaker 2:So anything I kind of do now. So in my previous role but as I am as education officer, I was doing a lot of training and really the training I was doing with teachers was trying to get across what the students had told me in this, you know, the real practice and seeing things from that point of view. Um, and I think my work you know whether it's true as I am or through my experience of working in the USA, but particularly this piece of research I'm working with this group of students is that as a kind of a new lens or different perspective and a different way of looking at things and that has only enriched my own professional and personal life and experiences. So that's kind of you know, I think I don't know if I'm making sense there, but that's kind of you know, I think I don't know if I'm making sense there, but that's kind of what I take away from it. I think everyone could learn something when we just make that space to authentically listen to those voices, you know.
Speaker 1:Thanks so much for listening to the podcast. This is a conversation-based interview designed to stimulate thinking and hopefully, support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of Middletown Centre. If you'd like to know more about Middletown, you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism. Go easy until next time.