Susan Madigan, OT: Starting University As An Autistic Student

In the first of two back-to-university episodes, we chat to Clinical Specialist Occupational Therapist, Susan Madigan. Susan has years of experience working with autistic students in universities. In this episode we discuss the challenges and many joys that autistic students might experience when they are just starting out in their college or university life. Susan shares lots of practical tips!

You can find out more about her work here: https://www.susanmadigan.ie/

Transcript

Episode Introduction

SPEAKER_01 0:09

Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown, and I'm also autistic. In this episode, I chatted clinical specialist occupational therapist Susan Madigan. Susan is currently working at ADHD Doc, but she's worked across universities like Trinity and DIT. I met her when we both worked at DCU. She has so much experience supporting autistic students through their time in university, and she's so much knowledge around where they may find challenges, but also how to navigate them. In this episode, we're talking about starting college or university for the first time, what freshers might want to prepare themselves for, and what they can look forward to. We also talk about how parents can manage their feelings around their child's newfound independence. Susan has so much practical experience supporting students, and I love to pick her brain. I hope you enjoy our chat. Susan,

Uncertainty Sensory Overload And Social Worries

SPEAKER_01 0:55

it's so lovely to chat to you for the podcast. I wanted to start by asking you: are there some sort of common anxieties that you see in autistic pressures when they arrive to college?

SPEAKER_00 1:07

Yeah, absolutely. Um probably uncertainty, understandably, is one of the biggest areas. So, like just everything, like how will I know where to go? What if I get lost? Where is everything? Like, I'm worried about the change in my routine. Like, am I gonna I feel kind of okay now, but am I gonna have massive anxiety when I get there? Or meltdowns? Uh, what if everything's too loud or you know, too everything too sensory? So definitely the whole uncertainty, like as in what will it be like and how will I cope? And then specifically academic stuff. So, like, what if I can't do the work? What if I don't understand what's happening? Um, like in a lecture or with the assignments, um, what if I fail something? Um, stuff that kind of academic worries, and then social as well. So, like, will I make friends? What if I don't make any friends? Or I don't want to make any friends, what if people try to make friends with me and I don't want to make friends with them? Um or that those so those kind of things. So just a lot of what ifs, really, um, and also yeah, just the really the uncertainty piece, just everything, and that's understandable for autistic people, like we don't know what's we often don't know what's gonna come and what's happening, um, and we need reassurance about that. So it's very common for people to be worried.

SPEAKER_01 2:35

Yeah, that makes complete sense because it's such a a leap into the unknown, isn't it? That's exactly it. Yeah, it makes perfect sense. And

Societies Support And Asking Early

SPEAKER_01 2:43

are there sort of big mistakes that you see um people making when they start?

SPEAKER_00 2:49

Yeah, there's a couple. Probably the ver the probably the biggest one that people might think is they joined too many societies and then they got overwhelmed, and then they end up going to none of them, and then they're like, Oh, I've missed my chance to join. So it's like a terrible they joined too many and then went to nothing. Or or joining loads and then going to millions of events and getting kind of overwhelmed, and you know, um, like if they're socializing a lot as well as trying to sit settling to college, they can get kind of you know burnt out and that kind of thing. So it's either maybe too much or too little. Um and then the other big one, I suppose, maybe is um not asking for help early enough. So a lot of people that I've worked with um like had a tough time in school, and maybe as well, they might have had like an SNA or they might have been kind of singled out a bit by going to like, you know, different classes, you know, they mightn't have done Irish and they would have gone off and done like an extra class or whatever that can. So they were kind of made to feel a bit different in that sense. So sometimes when they come to college, they're like, oh, like I want to be independent, I don't want to be different like that. So I want to try and do it myself, which is of course understandable. Um, but also what they might realize that is support is very different in in college, like um it's often quite discreet or might even feel invisible, like um lots of people, for example, use laptops. So in if you were at school, maybe you were the only person who used a laptop, but now college, loads of people use laptops. So that kind of thing, like it doesn't feel as different, maybe. Um, so I think people have that concern or reservation about oh, like I'll be singled out again, but actually that's rarely the case. And so, but that can make them delay kind of seeking help.

SPEAKER_01 4:46

And you you you brought back a memory for me when like I was a fresher and it was, you know, that all the tables were out of the different societies you could join. Yeah, and just sort of going, oh, I could be a person who's really into archery, I could be a filmmaker and just like suddenly thinking that all these things were gonna define my character and I was gonna become this new person. And yeah, it felt like a lot of pressure at the time, it definitely did.

SPEAKER_00 5:11

Yeah, and it can feel like pre like I should be signing up for this stuff, and even their parents might have been saying, or an aunt and our uncle, oh well, when I went to UCD, I joined the whatever society. So they might feel that pressure to do that, but often the right thing is actually to settle in for a couple of weeks and then look at the societies. Again, people assume, oh, well, it's too late, then it's not too late. You can absolutely join, you know, in week one, week two, week three, week four, whatever, but maybe get your feet under you a little bit before you start joining loads of things.

SPEAKER_01 5:43

Yeah, that makes sense. And then are there sort of big differences between the school experience and the the college experience that people maybe aren't kind of prepared for?

How College Really Differs From School

SPEAKER_00 5:54

Yeah, absolutely. Um at school for most people, uh, people check if you have homework done, maybe your parents, but also obviously your teachers. Like they, you know, you're ticked in in the morning for a roll call or whatever. Maybe people are checking. Are you understanding the material? Some teachers, maybe some teachers, maybe not. Uh classes are obviously much smaller in school than college. Um, there's, and I think a big difference for people between school and college is like deadlines. So when you're in school, do you know it might be, oh, well, this maths homework now is for tomorrow. Or, you know, I want this paragraph on Wednesday, you know, two days' time or three days time. Whereas in college, um, it could be six weeks' time or eight weeks' time, and you might have six essays due the same day in six weeks. So then it's like managing that. So nobody checks where you are or if you're there at all. Um you are given obviously coursework, but it's those long deadlines. Some tutorials have sign-in sheets, some don't. Um, nobody will call you or call your parents if you're not in class. Um, and the study really is self-directed. Um, so getting those essays done or those um lab reports, you're kind of left to your own devices. And if you're struggling, no one will really know. Um other than like they might know, you know, a lecture might notice you're not handing something up. Um, so it's really important to get a handle on that from the get-go, as then you might know exactly what to do, but to be aware, like using your college calendar and looking at the online, like most colleges will have, like, you know, it's Blackboard or Canvas or Moodle, one of those kind of things where all the assignments is there, all the modules is there, notes, it's all in the one place. So in that sense, it's easy. But I mean, I have had the students say to me, like after Christmas, oh, I didn't even know there was an online system. Do you know? So they were completely, like totally out of the loop. And again, it's something that I I would imagine the lecturers are mentioning. Um, but again, they might just say, Oh, it's on Blackboard, and you don't know that that's actually the online system. So, again, anything like that, if you're not sure about, don't try not to wait. Um, ask someone. Ask someone in your class, ask a lecturer, ask someone.

SPEAKER_01 8:28

Yeah. And I think that can be a real fear as well, because you you don't want to almost draw attention to yourself if you're struggling, because then you're like, oh, a lecturer is gonna think that I'm a you know, a waste of time or you know, whatever it might be that I'm I'm not doing the work, but yeah, that you don't know what to do.

SPEAKER_00 8:44

Exactly. That's it. You don't know sometimes what question to ask. So that can be hard. I mean, it's okay. I mean, Google might Google then, but again, similarly, like I had a guy that I worked with, a lovely guy, but I met him again after Christmas and he said, Oh, I failed two modules. Oh, what happened there? He said, I didn't know where the classroom was for those two. So we went to all his other classes, did all of his other work, but he could not find the classroom. So again, obviously, like he went a long time without trying to. I mean, I think he tried to find, but like there is a campus map, you know. So, like there is ways of finding out, but like you're saying, sometimes someone doesn't exactly know the right question to ask, maybe, and they don't want to sound stupid or silly or like they don't know what's going on. But again, that's what student services are for.

unknown 9:29

Yeah.

SPEAKER_00 9:30

Um, yeah. So the time management, like as in that's it's stuff is self-directed, time management, um, and uh also uh life skills. So again, like I would have worked with people who um might have had things like allergies or stuff, but then they were away from home and they were cooking for themselves, and they were just like, well, like kind of like come what may, because it was easier kind of just to cook something basic or whatever. And uh yeah, so that was that that was a problem for a couple of people. Um, so again, it's uh having a little think, I suppose, ahead of time, like what do I need? What's the basics? How can I, you know, even thinking about what's the first four weeks? What do I need for the first four weeks, something like that, so you can kind of get get the ball rolling well.

SPEAKER_01 10:16

Yeah, absolutely. And it can it can be quite freeing as well. I suppose we don't want to like work that they're gonna be left to themselves, sort of like there's such freedom in you know, not having people checking you. And like like I I struggled really badly in school because I felt like I was constantly being and I'm fairness, I was because I, you know, I was a bold child. So teachers were constantly on my back reasonably. But that freedom then when I went to university of of just kind of going, okay, I'm my own boss, I can do things when I feel like it's the right time to do them. Didn't always that perfectly initially, but the freedom was really, really helpful for me, I think.

SPEAKER_00 10:56

Exactly. And it really suits some people, but other people, it's too much too soon, or you know, they're not used to it. And again, for a lot of people, the structure of secondary does suit them, like those short deadlines, someone checking that they're going to be there, someone checking the homework is what keeps them kind of on the straight and narrow. Um, and when that then is gone, again, the freedom is lovely, but for some people it's too much and they and they struggle then to structure themselves. Um, but yeah, it's not something to be too worried about, but it is something like it's a big difference.

SPEAKER_01 11:30

Yeah, definitely.

Disability Services Counselling And Occupational Therapy

SPEAKER_01 11:32

And I suppose all universities and are different and colleges are different, but are there sort of sources of support that you would suggest people look for?

SPEAKER_00 11:42

Yeah, and this is something I talk to a lot of people about because I work with groups kind of in the the US and I work with various kind of you know, colleagues or peers in in Europe. And what's actually amazing is Irish colleges are really good. I know we tend to think of you know where what was kind of behind the behind the benchmark or whatever, but Irish third levels are pretty good um in terms of number one, consistency. So, like if you go to NUIG or University of Galway, or you go to MANUT or you go to UCC, wherever, you'll get a pretty consistent quality of teaching, material, and support. So that's the first thing. Like Irish colleges are pretty good. There's a consistency, like for example, almost all the third-level colleges have free or low-cost counseling and low-cost healthcare. So it's really good. Um, and on campus, usually or online as well, there's an office where you can go, like a general kind of office. So just student support. So your first point of call where you can go and talk to someone. And for autistic students, there'd be two kinds of bits that they'd be interested in. So the general student services, like I'm saying. So like help, uh, counseling, maybe pastoral care, some colleges have, finance, um, careers, right? So the general student services, which are really good, um, and maybe mature students. So some of our autistic students would be mature students, of course, worked with many. Um, and they're really good. Um, but just check again. Do you know sometimes people come in person and they haven't checked, you know, is will the office be open or whatever. So the office hours will be uh you know listed online so they can check, and then disability services. Um, sometimes, depending on the college, might be called access services, but usually called disability services. And that's basically where you can get your uh disability-specific services. Now, I've worked with many people who don't identify as being disabled brand, but to let you know, the services that you need might be under the umbrella of disability services. Um, and all the further education settings, all the higher education education settings, and all the universities all have a disability officer. Every single post-secondary has it as a disability officer. Um, and they can meet you, they can discuss your support needs, and they can outline what they can offer. It's slightly different in each college, but generally there's a level of support, especially for autistic students, which is very well recognized in Ireland. Um and those services are oh, it's a little bit complicated, but they're partly funded by the university, so partly funded by the government, and partly funded by the EU. Um, and there's uh a lot of different supports as supports available to the disability service. So it could be something like exam accommodation, so like um like a smaller room or extra time, um, although not everyone needs either or both of them, and in in-class support, so something like use of a laptop or um uh recording something, or like you know, some other gadget for in-class. Um, and most of the colleges have an assistive technology person for that. And then there's other supports like um more intensive supports like occupational therapy. Um, and all of the universities apart from MNUT have occupational therapy. And MNUT has a slightly different service, which is equivalent. Um, so all the college all the colleges have really good supports um and um uh the occupational therapists in particular are generally liked by the autistic students because occupational therapy, we're there to help people develop strategies to manage their time, to settle into college, to manage the sensory environment, maybe help them make friends, build routine, but also advocate for themselves. Like we want people to kind of take it on, you know, and grow from there. Um so uh there's really good services. Again, a lot of people sadly, a lot of people I see in the college uh setting, they they actually didn't have really good supports in in school, or it was very hit and miss. Some people had really good ones, some people didn't. Whereas at college, like I say, it's quite consistent. Um any college you go to, you'll get pretty good supports. So, again, even if you didn't have a great experience at school, the supports at college are really good. So definitely at least go and talk to someone, even if you're not sure like if you want to take it up or not.

SPEAKER_01 16:19

Yeah. And I I think I've talked to you about this before, but I am evangelical about OT services in universities because my life changed when I started OT and I got my diagnosis in university and yeah, learning to understand myself and then, as you say, to advocate for myself just changed my life completely. So yeah, I I forever advise people that if if the service is there, give it a go because you never know what benefit might bring.

SPEAKER_00 16:47

Yeah, and just to build on what you said there, um I think that honestly is the experience of a lot of autistic people that use the OT services. Um we do get very positive feedback from people. And it's partly for that. Like number one, uh the the college, sorry, the disability service staff as a whole, and including the occupational therapists, we're seeing lots of autistic people. So we're very experienced in working with autistic people who are at college. So we we kind of know we know autistic people and we know the demands of college, so we are good at doing that. And also occupational therapists who work in higher education, we are really across disability, meaning we see our people who are autistic, we see our people who are all DHD, so autistic and DHD, and we see our people who might have co-occurring autoimmune, uh physical conditions. Um, you know, so I would have worked with many people, for example, who might have been autistic, uh maybe dyslexic as well, might have had Ellers Danlow syndrome, and you know, some some other maybe some other physical condition as well. So again, I think where people might have had hit and miss supports in the past, when you come to college, we're really good at supporting autistic people.

SPEAKER_01 18:04

Yeah, I agree 100%. Um, and

Parents Letting Go While Staying Connected

SPEAKER_01 18:07

then are there I suppose it it can be a really tricky time, I would imagine, for parents, because they have been a point of contact when their young person was in school, and then suddenly that is taken away, and the young person has all the freedom in the world, and they aren't necessarily telling them anything at all. So, is the what what can parents do, or how how difficult can that be for parents?

SPEAKER_00 18:31

It's very difficult for parents a hundred percent. I remember we were doing when I was working in TCU, we were doing every year we did a disability orientation, which we loved, and oh my god, we had so much crack. And again, it was just to ease people in, you know, a few a week or two before college started. So it was really nice and it was calm, campus was quiet. The few times we had like it was for the students, a few times we had parents kind of try and sit in on the day, and it's only like it's only for students. So, again, just a lot of parents, in fairness to them, have been very involved and you know, maybe need maybe really needed to fight for their young person, you know, maybe really need to to push and push and push so their child could get their support. So they're really used to being involved, some of them, and so they're used to that, they're used to having to push and they're used to having to kind of um advocate and you know, try and really fight for supports. But again, that's not necessary at university. We're just gonna give you the supports you need, it's not a fight. So that's the first thing. Like, rest assured, if someone comes into us, we will give them the supports they need. But yeah, the parents sometimes have been really involved, even in terms of supporting people complete their homework, liaising with teachers, um, you know, in and out to the school. And again, that ends at the end of secondary school. When a young person comes to university, they are uh considered and treated as an adult, even if they haven't reached 18. So, again, obviously, some people we who come their 17 still, um, but they're considered an adult, and therefore we don't give another adult their personal information. So we cannot give the parents any um any information about the students' activities, their grades, their attendance, their whereabouts, their performance. Well, a lot of that we wouldn't know. Like we wouldn't know if they're going to the class or not, I suppose. So we wouldn't be able to tell anyone anyway. Um, but we wouldn't give the student the we couldn't give the student's parents any of their information um unless the student directly asked us to like, please will you tell my mom or dad whatever? And again, even then we'd want a good reason probably to do that. Um but what I would say is that at the start, you do know in September, whatever, um a parent and a young adult could meet with, like, let's say the disability officer in the beginning and they could discuss the support needs, they could outline you know, any concerns, or like, oh, you know, Robert finds this hard, or whatever, you know, whatever. But that would generally be a one-off. Like there wouldn't be ongoing meetings with parents, generally speaking. But if a parent was concerned about their young person, uh about their safety or their well-being, they could phone us and tell us. They could email us and tell us. We still wouldn't give information back, if you like, but we could accept that information, and we can then follow up on it ourselves if you like. So we could then reach out to the young person or you know, follow up on that. Um and and we do do that, and parents do do that. Um, so that's fine. And you know, it's very appropriate as well if they want to contact us and be like, Look, I'm worried, whatever, such and such is happening, I'm worried about them. That's fine. Um only on very occasional uh uh circumstances would we. reach out to a parent or family member with or without the student's information if we were very concerned about their safety or well being um in an emergency. So the best thing for a parent to do is to encourage their child to share information with them, which they can't do. Easier said than done. But parents should in the first instance encourage their child to use the services that are available. It is actually the opportunity for the parent to do less. Like they've had to fight like I was saying many of them have had to fight but now they don't have to fight. So they can, you know, relax a little bit, you know, take take more of a back seat and encourage their child, their young adult to go and use the college services and and and keep encouraging them to use the services. You know, sometimes people need to be told a few times to go in and register with a disability service. But it is really hard for parents and but again they can like I said they can liaise with us to a certain level they can meet with us at the start of college and but again it it it really is our job is to work directly with the student and and that is the system in any college.

SPEAKER_01 23:18

Yeah that makes and it it there is sort of a as you say it's a mental shift that must be really difficult to make if if you've had to spend so much of your time and your energy and just your brain space in fighting for your young person to then suddenly for that fight to not be needed and it must be a real shift but then to be able to think oh I have these people who I think if I'm worried I can I can contact I can send them an email and say I'm just a little worried about this and to to feel like you have that support yourself then as well is is really lovely I think. But again a difficult shift to make I would imagine.

SPEAKER_00 23:55

Well exactly and sorry what I just said was final kind of thing on that some of the colleges like as I touched on we have a disability um orientation in DCU we would have had a disability orientation and actually in DCU we also had the autism summer program. So we would have had a summer school every year for the past four years where it is specifically for autistic students who would be entering college so people who would be finished fifth year or sixth year. Not all colleges have that but some of the colleges do have various programs. So some would have again a disability orientation some even have an autism specific orientation I think UCC had one for a while. So again it is worth checking again it's not for the parents per se but again a reassurance for the parents that again you know they're meeting some staff and they're meeting some people so again it's an extra um kind of I suppose reassurance for the parents but again it's definitely worth looking up any prospective colleges and seeing if they offer anything like that.

SPEAKER_01 24:52

Brilliant.

Finding Joy Through Interests And Community

SPEAKER_01 24:53

And then we've talked about I suppose challenges that people might face and then supports that are available but there's also a massive amount of joy potentially in in going to university.

SPEAKER_00 25:05

So there are there particular joys that an autistic student can expect yeah absolutely and again this is something this is I think why I have enjoyed working in higher education for so long like working with people who might have told me you know something about their experiences in school um maybe they were bullied um severely some of them some weren't of course some got on fine and but many people hated school for lots of reasons. They didn't like the course material and they didn't like you know maybe they weren't into sports or whatever and their school was a sporty school whatever. And now at college hopefully number one they're doing a course they like so they're interested in it they're enjoying it they're meeting other people who also like that subject matter so that's lovely. They're meeting people with common interests um and they can do a deep dive into some of that course material like doing that particular lab project or that particular essay or dissertation on something that they're really interested in and they can just dwell in that and get really hyper focused on that for a while is lovely. So that's the first thing number one hopefully they're doing a course that they're really excited about. I suppose the second thing is things like clubs and socks. So again where they can um uh any any student of course including autistic students can access something maybe they didn't have access to before so like something like rock climbing or water sports where you know maybe wherever they lived or whatever they didn't have access to that or um so like obviously sport types of things and but also things like common interests so like uh board games or video games or sci-fi to be too stereotypical about the autistic interests and but also things like um the LGBT plus community on campus and the neurodivergent community on campus. So um a lot of the colleges now have a neurodivergent um society um which are obviously very welcoming and um you know fantastic place to meet other neurodivergent people. So so joining clubs and socks is another aspect and even I've seen people I've worked with who are very interested in do you know like the politics like class reps and all that stuff and just like so excited to be able to be part of the political process like amazing like and you know they're the tea shocks of tomorrow I'm sure. So like being able to engage number one in the subject matter interests but also number two in clubs and socks honestly what I tend to see is autistic people thriving at college. They're able to like that engage with those interests but also work in a way that might suit them a little bit better like that they can work in the library or they can work with a you know with a friend they can um you know they can leave if they need to if they're getting overwhelmed they can just cut out you know like it's a lot easier I think for autistic people to suit themselves at college and by that then they're not getting so overwhelmed maybe and they're able to um experience joy in in in their interests but also be less stressed which can then free them up to experience joy and there's generally speaking people meeting their tribe just meeting other quirky autistic people or neurodivergent people and and meeting people that they really click with which mightn't have happened in the school again if they're in a small school or whatever.

SPEAKER_01 28:50

So all of

Closing Disclaimer And Where To Find Us

SPEAKER_01 28:51

that piece like generally it's not all plain sailing but generally speaking I see people thrive in college 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 Facebook and Instagram at Middletown Center for Autism Go easy until next time.