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
Students’ Experiences of Bullying – Sinead McNally
In the latest Middletown Podcast, we chat to researcher, Dr Sinead McNally about recent DCU research focused on the experiences that young, Irish autistic people have of bullying. We talk about how the team supported young people to feel comfortable enough to share their experiences and what we can learn from them.
You can find out more about the bullying study here.
Find out more about the Autism-Friendly Schools Project.
Welcome to the Middletown Podcast. I'm Kate Hughes. I'm a researcher at Middletown and I'm also autistic. In this episode, I chatted Dr. Sinead McNally. Sinead is a DCU researcher who's been doing extraordinary work to learn more about the experiences of autistic students in Ireland. Now, full disclosure, I have known Sinead for a very long time. She was the first person ever to hire me as an autism researcher back when I was an undergrad. And I've been lucky to give feedback on some of her team's research work. As part of a big project that Sineade has been involved in, she looked at the experiences that autistic young people have around bullying, which had about how she conducted the research, what she found, and how it is essential to listen to the experiences of autistic young people. You know, that's my favorite topic. I hope you enjoy our chat. Sineade, it's so lovely to have you on the podcast. I wanted to start by asking you about sort of the broader project that you've been involved in around sort of understanding the experiences of Irish students.
SPEAKER_01:Thank you so much, Kat. It is fabulous to be talking with you today and part of this podcast series. Yeah, so I have been really privileged to lead a study in Ireland on the school experiences of autistic children from the age of five up to 19. So looking at how autistic students experience school in primary school and post-primary school. And we were really, really lucky to get funding from the IRC, now Research Ireland, through a coaless award. So this is a lovely interdisciplinary grant that allowed me to work collaboratively with my co-PI, Professor Mary Rose Sweeney, and our wider team of researchers to look at school experiences specifically. We've just completed this study, as you know, and it was a really in-depth look at what school was like from the perspective of children themselves. And it was really starting with children and young people and their parents and then moving out from there. So a kind of a bioecological model of children's development, their learning, their well-being, and trying to understand what school was like from their perspective, and then to make implementable recommendations for inclusive schooling and practices.
SPEAKER_00:Amazing. And I I love that you've taken such a broad approach to it and considered so many different perspectives as you've gone. It's really gorgeous, I think. And then I know the the more recent study that you've published looks at sort of bullying for autistic students in Ireland. And did we know much about that experience before you started the study?
SPEAKER_01:Well, for autistic students, I suppose from their perspective, not really, not an awful lot, particularly in Ireland. But we do know that bullying is a major issue and it is more likely to be experienced by autistic students. So sometimes reports have been over twice as likely as a neurotypical peer. An autistic student will be more likely to experience bullying than their neurotypical peers. And we do know that it's more likely for um autistic students in mainstream settings than in special educational settings. Um and also more likely than children with other disabilities or differences. Um so yeah, so the the data is very clear that this is an issue. Um, and what's I suppose most striking about um our study that we recently published on bullying was that we weren't looking for this in the data. So we our study wasn't about bullying. Um as I was saying, it's it's about what is school like starting from we went in really open. Um we did not want to lead children, we didn't want to bias children, uh, we didn't want to say, oh, tell us all the bad things about school. Well, what don't you like? You know, it was very much tell us about school, what is it like for you? And through that, then we were looking at things that worked really well, barriers as well to inclusion, um, and again centering the child's voice and their experiences of this. Um, and it was when we reached the post-primary students that we were starting to see this theme around bullying emerging in the data. So we did not ask children, and that's really important for looking at this data. Um, so it's quite unique in that way, in that this is something that was coming out for children for half of the sample of post-primary students. Now it's a small sample in terms of numbers. We're looking at qualitative, really large data set of qualitative data, but it's with um 18 students in post-primary school. Um, and of those 18 students, nine brought up bullying as part of their experience in school. Um, so we I love to talk a bit more about this. And I always say that, you know, I mean, I it's not that we love to talk about this when you first reached out about the podcast. I mean, it's it's such an important topic, but it isn't a it isn't um a happy topic. It isn't a pleasant thing to talk about and look at, but we really need to to um focus on this and explore it more. Um, and it's it's um, I suppose it's one of the really concerning issues that emerged from that wider study. Um, and I just want to thank the Anti-Bullying Center because um I was um given time and resources and support from that center through a fellowship to look at this um this particular issue in our data. We've lots of areas to focus on, but that fellowship allowed us to really zone in on bullying. Um, and I got to work with um the fabulous Sophie Butler at the center as well on this, one of the authors on our report as well. So, yeah, so I'm happy to dig deeper into the bullying findings, Kat.
SPEAKER_00:Yeah, because as you say, like it's a difficult topic, I think, to talk about and to think about. Um, but then as you say, like the fact that students organically were sharing that information, it shows how very important it is, isn't it?
SPEAKER_01:Exactly. Yeah. It was one of the authors on our report, Dr. Lisa Keenan, who really was pointing that out as so important that this is on profit. So we we know that when we talk about bullying, for example, um, how you ask a child or a young person about bullying matters. So we see that in the recent report by Emra Smith and Marika Darmody at the ASRI, that that's that's one of the key findings for them in this huge growing up in Ireland data set, um, that how children were asked about bullying determined how they reported on it or whether they reported on it at all. So it is really, really striking that that young people brought this up.
unknown:Yeah.
SPEAKER_00:Brilliant. And and you mentioned sort of your approach that you took to the the broader study. Um so I'd love to sort of learn a little bit more about how you conducted that research and sort of made sure that you were really capturing that lived experience, but also you were keeping everyone safe. Because I know that's something that you'd be very concerned about.
SPEAKER_01:Yeah, so you know us so well, Kat. Yes. Um so that was that was really, really important. So we worked within a neurodiversity approach, um, really valuing everybody's experiences and differences, not privileging any one kind of um experience um or way of being. And what we wanted to do was not go through schools. So that was really important for this, um, so that we were um everybody had an equal opportunity to take part. Um, so children and their parents um could take part online on Zoom, so meet with us to talk about their experiences that way, or they could come to DCU in person and meet with us. Um, they would meet with a postdoctoral researcher here in my office. So it's all done up lovely and really nice and um welcoming. So lots of little we've we're bringing out a paper actually on this on details around the methods of making sure that everybody was welcomed, valued, and included in that process. And interviews were adapted to meet the needs of um and the the preferences of students who wanted to talk to us. Um, so really participatory methods, um, sharing in advance what the study was about, um, getting in advance as well extra knowledge about what students were interested in, what they preferred. For our younger students in particular, were they aware of their autism diagnosis? Um, to bring that into our awareness of interviewing, so that children left with you know a feeling of being empowered talking about their experiences, and that nobody left feeling worse or you know, uh distraught or upset, um, because we knew that some things that would be discussed could be very upsetting for children if they were relaying difficult experiences. And one of the reasons why we didn't go through schools was because we know that you know our environment does shape up a little bit what we say, uh, where what we might feel obliged, especially our younger participants. We know this, you know, in as developmental psychologists, thinking about children's desire to comply and do what they think we want them to say or say what we might want them to say. So we wanted um children not to be in the school environment when they were talking about it, and that they could talk about you know what had happened for them or what they liked, didn't like. Um, and they could do this in many ways. They could use photo voice, um, uh so share photos of what was important to them in school or drawings, um, whereas some students prefer to write about their experiences rather than do the interview as well. Um, and we had one 10-year-old boy who took part using AAC. Um, and we wanted more children um uh you know uh who may not communicate um through speech to take part, but that was one of our um our limitations, I suppose, in the study. We I we might do another podcast about that. We know what how do we do that? And we've reflected on that in in our um in our current study that we're writing up, but but there was a huge you know, huge consideration. So thinking about um reminding children that they could wear what they like, for example, they could sit where they wanted to, they could get up and move or take breaks. Um there for younger children, we did have the parents nearby or with them for our um adolescents. We did ask that a parent was nearby in case they were needed, um, and sometimes they joined in as well. So really flexible, really responsive, thinking about lighting. Um, one of our post-hops as well was fabulous in checking which doors slammed, you know, which ones made noises. Um, so when children were coming into the office, that you know, there was no startling noises or anything that could be particularly upsetting, knowing the layout of our campus, which can be quite complicated when you come to visit. Um, so things like that, that you know, they're they seem like small things, but they make a huge difference. Um, and then of course, when we launched our findings, this was all for the children who took part. It was the autism-friendly, child-friendly launch. And so many of our participants traveled to it and came to it, which was amazing. Um, so yeah, so thinking about it in in all senses, but at the I mean, I think that's our duty in terms of our ethics, and we were all thinking very like on our team, um, and worked really hard around that piece. So I hopefully that is what allowed or supported students as well, if they felt that this this was really important that it came up. Um, and it did come up for parents as well when they were after their their child was interviewed, and they were, you know, if they were um talking about their experiences or their views, you know, this did come up for for several parents as well, around what changes they wanted to see. But also, it's just you're reminding me now as I'm talking through this, around thinking about we were very conscious um when designing the study that, you know, we didn't want children as well to potentially be upset or hearing something that they might not normally hear from parents too. So we gave parents that opportunity to write in a separate questionnaire as well around changes they may like to see supports, additional supports, or um experiences that were particularly difficult. Because again, we're just thinking about child is sitting there going, Oh, my mom is really upset, or my dad is, you know, finding this really difficult. So all of this can really impact on children and we're asking them to come in and talk about things that are sensitive, or we're asking them to meet online. Um and we did find that a lot of children and young people preferred to meet online, and that was really nice. They were in their home environment, um, they could have familiar things around them. Um, and of course, it meant if you were email or cork, you could, you know, meet with us easily. Although we did have uh children traveling a good bit as well, which was lovely.
SPEAKER_00:I I love it. I love that you you thought about minding everyone, which I think is so, so important. And then also just handing over the power to the young people and letting them decide how they ran things, how they wanted to communicate, how they felt comfortable, and letting them be themselves, I think is just it's beautiful. And then the fact that you actually told them what you found at the end, because I think so often people take part in research and bare their souls and then never hear again from the researcher. So the fact that you shared is just gorgeous, yeah, really, really lovely. Um, and then I suppose the the big question is what were the main findings and the main themes from the from the research?
SPEAKER_01:Of course. Well, focusing specifically on the bullying piece, or yes, so obviously within the wider study, we we found a lot about relationships as really pivotal, being accepted, being, you know, those micro accommodations and thinking about the environment and thinking about the planning of the classroom. And but relationships were really at the heart of it. Um, so when looking at bullying, as I said, this came up for nine, nine of the students in post-primary. So we in our analysis looked at only explicit accounts of bullying because we hadn't explored this as a theme and we did not ask about it. Um, we felt in terms of the integrity of the analysis, it had to be where a student had named it and talked about it. So um it didn't come up for our primary school children unprompted. Um, but again, that could be the nature of the way in which it's it wasn't asked about um for for younger uh children. Um and we do know that this is a this is something that you know happens mostly around that late middle childhood adolescence time. That's when bullying experiences peak for for all children. If if they experience it, it is tends to be around that time, and then it um decreases in adulthood. Um, but it is a peak time. So we had um we found in the data that four we had four, three girls and one woman and five boys who brought this up. So we had more girls in our data than more female students than you typically see in studies as well, which was really um good. Um, and what the students were telling us was that their primary experience of this was through social exclusion, so being excluded, um, and also um using the term autism in a derogatory way, so that sense of um being othered, um, being talked about in a negative way. Um uh students, particularly the girls um and women uh in the in the study um talked about masking and the need to mask. Um, and uh one of the mums was really, really fabulous in the level of detail she went into, which we can't include in the report, but really um in-depth discussion around this this pressure to mask and to protect and to be safe. Um the word dangerous was used um at one point um around the environment and really focusing in on when teachers aren't around, it's the outside the classroom piece, but even within the classroom of isolating others of that isolation being, I suppose, accepted that that a child or young person would be on their own, would be not included. Um and yeah, I I think that was really, really striking about the social piece. So it was the opposite of what we were looking at in our study, including autistic children in school and and looking at ways to do this. And what we were finding around bullying was that it wasn't the physical bullying for our small number in this study, but it was the social piece was really, really striking. And that stigmatizing piece around um being autistic, being oneself and being true to oneself. And um, I suppose we can talk a bit about the other literature that's out there, but this really resonates with um with literature on bullying more generally, um, quantitative studies that look at who's more likely to experience bullying and the type of bullying associated with um, for example, in in Ian Myrna Rica's study, it's the social, it's social exclusion piece, the social bullying piece that was most likely to be experienced by, in their sample, students with a disability. So it was really interesting that that was the main type of bullying that we were seeing. Now their report came out just after we had finished writing ours. It was a great time. They they launched theirs, which was fabulous timing for us, so that we could include their findings in our report. But we had just finished writing it, so I was I was waiting with baited breath to see what they found in these this quantitative data, um, looking at experiences. So really striking that it was the social piece, and that's what we focus on in this short report is the the social piece. I should say, and I I mean this, Kat, you see, I keep talking now unless I'm stopped. We have we have a deep, um, deeper look at this in um paper that is under review at the moment. So there is more to read on this coming, hopefully, if if that paper is accepted. Um so the report just really highlights that it is that social piece, and we need to put a spotlight on this, you know. So if we think of traditional bullying uh as kind of physical, like, you know, dominant kind of um way of being, and that obviously is is a form of bullying. It is that social exclusion piece that we are shining a spotlight on in this report.
SPEAKER_00:And did the students mostly focus on what was happening like within the sort of brick and mortar of the school, or did they mention kind of any sort of external sort of social media or any of that?
SPEAKER_01:Yeah, the the virtual world, the social media didn't come up. No, they were talking very concretely around the school experience. Um, and if I bring us back a little bit actually to the children, the young people who brought this up, um they were in mainstream settings, and two of the students who took part were now learning from home at the time. They were learning from home at the time of interview because they had previously been in a mainstream setting.
unknown:Okay.
SPEAKER_01:So I again that alignment with, you know, the international literature on who's more likely or where is this more likely to be experienced on is that mainstream setting. Um, and again, for our small sample, but for whom this really was clearly being described as having such a negative impact on their mental health, on their well-being. Um, and seeing, you know, hearing about this in real, in real time when these students were still in school or learning from home because they had previously been in school and and just couldn't couldn't be there and and talked about how it was just so hard. That's one of our students and that it was it's just so hard in the school setting. Um yeah.
SPEAKER_00:It's actually the the power of talking about something like this, it's difficult to talk about and difficult to think about, but the power is that we have that knowledge now. So where do we go next? So would you have any sort of suggestions, say for schools in particular, and if it's it that if that's sort of the setting?
SPEAKER_01:Yeah, so I I think you know, the I mean, as researchers, we know the qualitative work, which goes in depth, is really, really important. Um, and I think our students have done an amazing job. They're not our students, our participants in this study. The students themselves have done an amazing job describing that link between, you know, wanting to fit in and wanting to be themselves, but that sense of actually my identity is not accepted. And that is that was coming out, you know, that difference was not valued, and difference could be a dangerous thing. It could be something well, dangerous wasn't used in that context. So I'll I'd be mindful of that. But that difference was negative. It was negative. Um, and that really fits with work with adults around stigma, um, Monique Botha's work around the impact of this, um, the likely impact of stigma on mental health and well-being. And we see this from young students in secondary school talking about, you know, this the term autistic being used in a derogatory sense. Um, and so, you know, either not identifying and not saying that they're autistic or being just aware that it's going to be viewed negatively. So to answer your question, which was what can we do about it? I mean, the the recommendations we've made are very in keeping with our wider understanding of inclusive education. And the focus is really on creating those safe cultures, those safe environments. So we know buddying is a social thing, it's it's driven by societal norms and institutional norms. So we need to look at our institution. We're not looking at the children going, how can we make you less different and more of the same? That is not the solution here. And we would never ever suggest that. And we're listening to children on this, and where the safe climate, having those relationships that are warm and welcoming. Um, I love the evidence from Furtzberg and um and uh Thornburg around um the idea that within the classroom of you know minimizing hierarchies and within the school, minimizing that hierarchical um way of being and valuing difference, so valuing diversity. Um, and we see that when you talk to children and talk to young people, we're just not doing enough of it yet. I mean, we're getting getting better at it, and there's amazing studies in our end coming out on this and internationally, but it's still limited. Um, and if you talk to the children about bullying and talk to them about school, um children and young people are saying, you know, difference is is the is is it's not necessarily safe. The Department of Education found this in a survey. One in ten children said this, um, that it's not safe to be themselves. So um, in a World Cafe run by the Anti-Bullying Center recently, um, secondary school students proposed this themselves as a recommendation for combating bullying, was to value difference and make sure that that's valued. So we have that as one of our recommendations. It is from students themselves. It's certainly coming out from the autistic students in our sample who who wanted to talk who brought this up and talked about bullying. Um, so valuing diversity, really, really key, safe cultures. And we also then building on the data, and this, you know, this is the psychologist in me. You know, you do interpret, you do look at this huge literature that we have on on bullying generally, less of, you know, we have less uh data that we can draw on on the experiences of autistic students, but looking at um challenging a deficit view of autism. And I I felt very strongly that that had to be one of the recommendations because if you read what the young people are saying, it is that deficit view is so damaging that really aligns and supports the studies that um are increasingly being published, showing in a very robust way the damage of that deficit view. So we have that as a key recommendation. And lastly, it'll come as no surprise that um, including children's voices and asking them in schools what will help uh combat bullying is really pivotal. We tend to go in there as adults. I do it as a mom, I do it as, you know, as an adult researcher. We go in and go, well, we know the answers, we can help. And oftentimes, you know, the evidence is we can make it worse if we're not listening to uh what this is actually like, you know, how safe do children feel where they currently are and young people where they currently are. So we need to have those voices. The children and young people need to have a voice at the table around bullying policies. And again, we see this, we we see this as in Canaltis, you know, it's in uh recommendations of how we implement um bullying prevention. I should say it is not an easy knot to crack. You know, bullying is is incredibly um a difficult phenomenon to to tackle. Um, if it was if it was easy, it would have been solved by now. Uh, we know it's a massive issue in across environments, and it can, you know, schools, workplaces, it is something to um to address. But I think those three recommendations that we've made, they're informed by the children and young people we met with. Um, they make absolute sense in in light of the wider literature. Um, and I think they are focusing on the inclusion piece rather than tackling the exclusion. So culture cat, I think is the main word here, isn't it? It's culture from the top down, it's our leaders in schools, it's whether they see children in those equal terms, um, where the hierarchies are coming from. You know, I think this is the space we're going to see researchers go into. Um, looking at if we have less hierarchical structures, a culture where it's not this social dominance, you know, piece. Um, this again is emerging in child-centered studies, where you ask children, what is bullying about? Why do you think buddying happens? You know, it is that that view of, well, it's it's status, it's belonging, it's, you know, how do we establish ourselves in social situations? And so it's it's linking that and trying to understand where um how do we support then and encourage and empower children to be themselves and be different and be who they are. Again, I see this as a mom, you know, um it's it's like talk about at home. Um, but I can see, you know, my my children are telling me that's gonna be easy for you to say, but that is not what it's it's like. Um, you know, and being being ourselves at that age is is is it's gonna take a lot of our support. And we're the ones who can change culture in in schools as adults. Um beautiful thing.
SPEAKER_00:Yeah, absolutely. And I I think that notion of hierarchy is really interesting because I think it's something that isn't often spoken about um in that way. Particularly in education settings. And I think the way autistic people think about hierarchy is often quite different to how non-autistic people think about hierarchy. So I think that could play a really interesting part in how we tackle all of this. So that's fascinating, really, really interesting to think about. Which leads me to my next question: where would you take this research next if you could?
SPEAKER_01:Oh, I'd take it to the children. I would absolutely take it to the children. We obviously were not investigating bullying. And so, I mean, I I literature is my thing. You know, when I went into the literature, I was like, oh, surely we're going to have studies on this. And I was finding it incredibly hard, especially with our younger children, especially trying to understand girls' experiences around the masking and social peace. And I think, you know, we're getting better at listening to children generally and young people generally around bullying and including them. But we really need specific, focused research, uh, talking with autistic students about bullying and asking about it. So we didn't ask, and this is what we found. So, what are we going to find when we actually ask about this and explore in greater detail? So that is where I would start with this. Absolutely. And looking at if if changes are implemented, you know, are they working? So, where you incorporate valuing difference, where we're really actively trying to support that and challenging, challenging deficit views of autism. Do we leave do we end up with a better outcome? Are we seeing that difference? So, you know, we want I want data, Kat. I think we need data. Um, and I think we need voice, and and once we have those, we're in a better space around this. Um, and it it is, it's it's quite, you know, you nobody wants to feel like they don't, they can't do something. We we we so everybody is acting. Well, we hope everybody's acting. People like we know schools care, we know principals and teachers care, we know parents care. Um, so we need the best evidence possible around making those differences um and those positive changes, but we will not be able to do that without having autistic students front and center of bullying policies and what what needs to happen there and what experiences, what it's really like in schools and what can help.
SPEAKER_00:Absolutely. I I could not agree more, and I I love that about the approach that you take to research. It is about handing that power over to the people who are the experts in their own experience. And yeah, that's what we all need to be doing, I think. Um, my very last question for you is um what have you learned personally from working with autistic young people?
SPEAKER_01:Oh wow, that's a gorgeous question. Oh my goodness. Um I suppose I've I've been working um in autism research for a long time since since my PhD when I was much younger in my twin. Um, and I'm in my 40s now. So um, so I guess I I mean this work is really important to me um personally, and it's uh the children who've spoken with us and who came to the launch. Um one little boy, well, he was not little, if he's listened to this, he's not little at all. Um, and he had travelled with his mom, and he came up at the end to say that the quote that I had picked for the launch was his that he had given, that he had said, and um, and we hugged and it was lovely, and it was just it was a lovely connection after everything, but it was it was the power of voice and ownership, and this child was particularly empowered, was just amazing to to see and and very proud of him himself, and rightly so. Um, and I think it is that advocacy piece um that is just incredible. So I'm learning that. Uh, and learn I learn every day from children, Kat. This is an important way to be, I think, in the world. And I think we're doing something wrong if we're not learning. So I guess that's why that's a bit of a challenge for me, because every time, you know, doing this research in particular, um, it was incredible to hear our uh we had advisory groups as well, um, and our second advisory group, not second, but a smaller advisory group was autistic students in in post-primary school, um, and incredible in uh input and sharing of their experiences, but also of how things need to be to be inclusive. Um, so yeah, I I think it's just it's it's such um what's the word? It's like it's it's so deeply woven, it's kind of hard to on weave those threads of the learning that has that has happened, but incredible. I think everybody should be should have this opportunity. So I'm in a very privileged space, I know that. Um, and to work with amazing people, amazing teams for the Autism Friendly Skills project, then with the Anti-Bullying Center. It's collaboration, isn't it? Collaboration makes the world go round, but we're we're having juggler mean collaborators and telling us. And and that responsibility on us to listen, I think, is the biggest lesson possibly.
SPEAKER_00: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. 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 Center for Autism. Go easy until next time.