The Middletown Centre for Autism Podcast
DCU’s autism-friendly initiative with Fiona Earley
As the Leaving cert approaches, lots of young people might also be thinking about university life. In this podcast we chat to Fiona Earley about Dublin City University’s autism-friendly initiative to find out about the steps that they’ve taken to support autistic students and staff.
As the Leaving cert approaches, lots of young people might also be thinking about university life. In this podcast we chat to Fiona Earley about Dublin City University’s autism-friendly initiative to find out about the steps that they’ve taken to support autistic students and staff.
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 Fiona Irby, who's leading the Autism Friendly University Initiative at DCU. Full disclosure. I did help out with the project a little in its very early stages. I was very lucky to be able to work alongside some amazing autistic students and very enthusiastic staff. I was excited to hear all about the work that Fiona has done on the project, hear all of the ideas that have shaped it so far. So, Fiona, thank you so much for joining us on the podcast. I would love for our listeners to hear a bit more about DCU's Autism Friendly University. So could you tell us a bit about the background of it first?
Speaker 2:Sure. Thanks for inviting me, cat. First of all, the background of the project really began between a conversation with Adam Harris, of as I Am, and Brie McCraw, who was at that stage the president of DCU. So Adam spoke to Breen about some of the barriers and challenges and potential solutions that autistic students faced in third level education and, following this conversation, a piece of research, quite an extensive piece of research, actually was carried out. It was led by Dr Mary Rose Sweeney in collaboration with DCU and as I am, and part of this project was asking autistic students about their experience in DCU.
Speaker 2:So really, the findings of the survey showed that the support provided by student support and I think in particular with by the occupational therapist, was highly valued by autistic students. But some of the challenges that autistic students did face in DCU needed a very different type of support and approach, and some of these challenges included coping on a day-to-day basis with a very overwhelming, busy, loud, chaotic, sensory environment, but also the autistic staff and autistic students being quite misunderstood due to a lack of awareness amongst their peers and teaching staff. And these are, I suppose, challenges that neurotypical students didn't face, at least to the same extent. So the project was built on some principles that outlined how to address these and what the problems were, and that's how the project began and it ended up with eight principles, but now nine.
Speaker 1:And what I love because I know it's a really extensive piece of research that was done and it was a very sort of holistic approach. And the project has been very holistic in its approach as well, because it's you know the people, the services, the spaces around ECU and have you had to focus on one aspect more than another as you've been sort of rolling out the project.
Speaker 2:Yeah, cash. Well, actually I would say that probably not so much an aspect but more an essence, and it was explained to me by a student. Actually that, like it, really is about creating a culture that accepts personal differences and values a person's knowledge, their talent, their passion so that that's valued above their ability to conform to the standards of a certain neurotype. So it's it's like really valuing difference, not just saying we welcome difference. So a lot of focus has been on raising autism awareness and acceptance amongst all students and all staff and I suppose following from that there's now a lot of kind of ongoing conversation about autism on campus.
Speaker 2:The project did gather attention and momentum by visible changes in the environment, for example quite spaces, and the progress of the project has come from the connections made with other autistic staff and students and the training and workshops provided. Quite often after these workshops, staff or students would contact me afterwards and some were looking for guidance and others were looking to support the project and like really valuable contributions and ideas and suggestions that I'd never have thought of. And particularly over the last two years, a lot of artistic staff have contacted me looking to add to the project and because you know, artistic staff are there all the time and students come and go and I think as a result of that, that's why DCU added a new principle of supporting autistic staff. But the key people that I suppose came up with this principle were autistic staff from their lived experience of really what they needed in DCU to thrive, talking about their conditions for success.
Speaker 1:Fantastic and I think it speaks a lot to the change in environment and attitude at DCU that so many staff members are comfortable to sort of talk about their own autistic identity and sort of bring ideas to you. So that's really, really lovely. Did you find that there were specific challenges that students were facing over the course of the start or over the course of the project?
Speaker 2:Yeah, definitely so. The sensory environment of campus was a challenge and remains a challenge and it's a daily challenge. It can result in burnout, in burnout, and one student described it as before she comes onto campus she puts on like a kind of warrior mode, like ready for battle. So she's remaining tight and anxious all day, like in a kind of a hyper vigilant state, and unless she finds frequent times and places and without stigma to decompress, she stays in that warrior mode all day. And other students say, like at the canteen, that the constant smell of noise and motion and trays going around that they just leave due to a stress headache, due to a stress headache. But what this results then is in students kind of backing out of social events because they don't have the energy and because of the ill feeling that it brings. But it can also lead to them avoiding lectures and lots of social events and becoming kind of a little bit outside of the group. And sometimes this can then further lead to students just dropping out of college because of the energy it has taken them to focus on a lecture after navigating their way to the lecture, but also the lack of being able to have energy to socialise during times when other students are socialising. So definitely, the environment is one challenge, but also another major challenge and I kind of briefly refer to, is other people's lack of awareness about autism, particularly about different communication styles. So this has caused lots and lots of mutual misunderstandings between autistic students and neurotypical students and staff and also autistic staff, and quite often what happens is, if there is, so to speak, a blame put on the situation going wrong, it's quite often it lies with the autistic student or the autistic staff, really, I suppose, because they're, they're in the minority, and I know that I'm like I would. A lot of students talk to me and and also to, I think, the OTs, about what they would call social blunders and it can be quite a continual feeling that they just have a feeling that they've said something wrong and they're very stressed about it, and there's a lot of talk about people being cancelled and it can turn into like a real stress that impacts the students, mental health, their well-being and their ability to study and really long term, and it can lead to the student then um, acting to be neurotypical, trying to blend, trying to pass in, which is absolutely exhausting, and this is another, I think, cause of dropout, because that is not sustainable, and just constantly feeling that you're watching what you're saying and just that sick feeling in your stomach that you've said something wrong and you've upset somebody, and really without intention.
Speaker 2:So actually one of the workshops that we I think has been quite successful is where we go into big groups of students and we just talk about difference. So we talk about, you know, people who are introverted, extroverted, direct, non-direct, talkative, quiet. I'm also like about people who really struggle if they're interrupted. They find it hard to come back to the track They've been derailed. And then there's people who are continually interrupting and maybe dumping lots of information.
Speaker 2:And this all happens within groups and there's always problems in group work for all students, but I think there's more issues for autistic students just because of all the hidden social rules and lack of clarity.
Speaker 2:So during these workshops we talk about all these differences of different ways of being, and it does generally result in a lot of students like just putting up their hands and saying, yeah, I misjudged that situation, really didn't, didn't even think that that was something, didn't know so, and often what comes out of it then is like when we talk about different needs and autistic students sometimes come to the workshops and they'll talk about you know, when they're in a group, that if the environment is predictable, if the communication is clear and the role breakdown and if there's breaks, that really helps them. And then you just see everyone kind of looking as though, well sure, but that would help every group to work better. So it really is. I suppose, about talking about different neurotypes, but how, when you make things autism friendly, it's actually people friendly and it and it shows it teaches all students how to um engage with people who communicate differently, whether it's on campus or outside of campus. So they were the main challenges, kathy environment and lack of awareness, of awareness about difference.
Speaker 1:Yeah, that makes a lot of sense and as you say, I think any time anyone is given a chance to take that step back and think about how they interact with people and whether or not there's an empathy and a fairness in how they're reacting. But it's such a gift to be able to do that. So, yeah, it's so valuable that all of the students are getting a chance to do that, although you mentioned the idea of being cancelled, which hadn't occurred to me. Like I'm so happy, in a way, to have to be old and not to have grown up in that generation because, oh, the fear of that must be massive.
Speaker 1:It had never occurred to me that that's something that people are thinking of.
Speaker 2:Yeah, they're definitely thinking of and they're thinking of. It happened in secondary school, but the word cancelled wasn't used, but they just found that they were being outed and a feeling of being outside a group. But now there's a word. Now it's like you, you get it's yeah, it's more direct, concrete.
Speaker 1:Yeah, yeah, yeah, um, and did you find um that it was difficult, difficult to get staff buy-in on the project?
Speaker 2:mostly I didn't, and I think the reason why was because most people know somebody who is autistic it's a family member, it's themselves or it's, um, it's friends.
Speaker 2:But I suppose there were often questions about um, well, why am I making my lecture or this space, like, why are we adapting it to make it autism friendly if there's maybe only one autistic student in my class or maybe there's none?
Speaker 2:So this was like working with students in in that group work that I spoke about. It was about on picking that belief that well, actually, maybe there are autistic students in your group and they haven't disclosed, and maybe there are autistic students who don't know they're autistic yet and you're more than likely working with colleagues who are autistic and I think really importantly, like, what we are proposing that we do here is people-friendly stuff, it's stuff that is going to benefit you, your colleagues and your students. It's it's not you're not doing it for one person, you're not doing it for one neurotype, you're doing it for everyone. And this was also why I it was a little bit easier to get buy-in was um, because I work in student support and the project is quite heavily supported by student support, particularly the OTs, but also it's a tangible accreditation that is signed off. So that makes a big difference to how I can get things done and credibility that it takes there's signatures on it. This is what we're doing.
Speaker 1:That makes a lot of sense and what was the, or has been, the most difficult part of the project for me the most difficult part was just was getting started.
Speaker 2:And just looking at the, the principles and the actions and there was something like eight principles and 42 actions I just became quite overwhelmed. I didn't know where to start. There was three campuses and some of the actions. They sounded good on theory, on paper, but when I tried to bring them from paper to practice they just didn't work so they had to be removed or adapted. So there was lots of trial and error within, I'd say, within the first one to two years. We're now four years down the road, so it does seem to have kind of landed in a place with the right people around. It's kind of it's found its tribe, so to speak, and it's kind of naturally progressed now. But yeah, definitely getting started for me was the most difficult thing.
Speaker 1:It makes sense. It's a massive campus and there's so many different things happening across the campuses at any given time Like it is a huge, huge space to even think of, let alone all of the different people and attitudes. And yeah, it's not a village, a big village Definitely. What surprised you most? About the project so far you most about the project so far.
Speaker 2:I think the amount of interest that it's gained, and that's it's not just from universities but, like I would get a lot of contact from parents who are parents of autistic children and their child might be eight or nine, but they've seen something about the project and they're just calling for a chat really about you know that this is a situation my son or daughter is in and feeling a bit kind of more hope towards their future.
Speaker 2:Also, other universities and workplaces really, I suppose just contacting the project to find out what they can do. They want to do similar things, whether it's in a workplace or another school, and so I found that surprising that the interest was not just from educators but from all different people in the community. Also, I think the the level or the number of students disclosing has really, really increased. I think it's nearly tripled over in the last three years, and this may not be at all related to the project. It could just be that more autistic students are making it through secondary school with better support and entering university. But I think either way, the number of students disclosing is encouraging because there are some supports that aren't available, unfortunately, unless students disclose. So I do think it's encouraging. Yeah, definitely.
Speaker 1:So I do think it's encouraging yeah, definitely, and it's so lovely actually to think of parents of young children now can imagine a different future for their children, you know, and I think it's just a really good piece of evidence for other education settings to really make an effort to make their spaces as autism friendly as possible, because it it shows that it's a really clear route that the parents and then the young people have for themselves.
Speaker 2:So yeah, yeah and yeah and an expectation, and um an entitlement, and um um being able to shape their school years through to planting. You know, planting that seed of yeah, university is is possible yeah, absolutely, that's lovely.
Speaker 1:Um, and then it are there some changes that, say, a lecturer or an educator in any setting might be able to make to the their ways of working? That might make things um a bit easier for autistic students, would. What do you think?
Speaker 2:Yeah, I think if they followed kind of how the Neurodivergent Society runs, their events and their culture of understanding different types of communicators, how things are generally better for everyone if they're clear and concise. Generally better for everyone if they're clear and concise. Um, if um questions are actually that you're not trying to trick the student by making the question complicated, that the student should be able to know pretty quick what the question actually means. Um, instead of trying to demystify kind of trick questions, but really clear, concise, concise communication and pointing out at the start of each semester that they are an inclusive communicator. If students want to talk to them afterwards about how they would like things or feel they have a certain opinion on how assignments could be more friendly for everyone, and also, I suppose, just an awareness might be like to sit in a lecture hall trying to focus, trying to concentrate and then trying to figure out what is actually being asked here.
Speaker 1:It makes a lot of sense.
Speaker 1:Yeah, and I think the idea of being open to student opinions and open to students coming in talking and letting the students know that you're open to that can make a massive difference. And I know for myself as a student. I think I possibly never would have gone and talked to a lecturer about that sort of thing, but even knowing that they were open to it would have made such a difference to me. You know, to know that they were accepting and that I had a little bit more wiggle room and a bit more space with them would have made a huge difference and taken a lot of stress off.
Speaker 2:A huge difference.
Speaker 1:Yeah.
Speaker 2:And it's very simply done. That's it.
Speaker 1:Exactly, and what are you most proud of in relation to DCU and its autism friendly initiative?
Speaker 2:I think I would have to say I'm very proud of autistic students and staff that have stood in front of large groups of their peers whether that's staff or students and have spoken quite clearly about their experiences, both negative and positive, within DCU. Whether it's an autistic staff or student, they have busy work schedules and they have busy study schedules and they take the time out really because they have had difficulty, not because they've had all positive experiences and they don't want other staff or students to go through that difficulty. So they're standing up in front of their, their friends and their colleagues and they're talking about autism and how it has impacted their day-to-day experience in university and the students they're so open about talking about how it feels to have been on the outside of a group and also how that impacted their self-esteem and their focus on study and the sensory environment. But they also talk about the great joy and happiness that being autistic brings to their life. And I think quite often when people think about autistic passion they might think about computer science or trains or dinosaurs, but it's so not true.
Speaker 2:Like autistic people can be very passionate um about anything and I think in particular about like social justice, from from what I've seen, um, um, one student actually was telling me that before he um, before he was accepted to study in DCU, he was studying early childhood. He, for years and years, was going home from school from charity shops, buying books and videos about child development and what he would say. And he then came to DCU to study that and, of course, like the passion that he exuded about this subject is unparalleled exuded about this subject. It's unparalleled. But he was actually saying that by him engaging and being able to study something that he loved in the right environment that to him, was self-regulating. And he said that, like you know, he would, um, if he felt anxious with that, he could meet you on the corridor and he would give you a big, like long talk about um, the national convention of rights on the child.
Speaker 2:And he openly says that, like afterwards he'd be like, I'm not too sure, but I I just felt the need to tell you this. But that same student, um, three years later, he's now pursuing his studies at a doctorate level and so, like his perspective is going to change research because it's going to be accurate and it's going to be applicable to the daily lives of autistic people, and he had tried university once or twice and it didn't work out. And it wasn't that DCU was the answer to everything at all for this student, but I think he said the fact that it was autism friendly, just like what you were saying there, cash. He felt that he had leeway and that he would meet more of his community there. So, yeah, it was really good to see him thrive so well actually.
Speaker 1: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.