Subscribe
Share
Share
Embed
Krysia, Zoe, and Ian discuss their experiences of being neurodivergent post grad students.
The transcript of the episode is available here: https://share.transistor.fm/s/3c763a21/transcript.txt
The transcript of the episode is available here: https://share.transistor.fm/s/3c763a21/transcript.txt
If you have any questions, or just want to say hi, email us at cat@abdn.ac.uk or find us on twitter @autismtheology.
This podcast is brought to you by The University of Aberdeen's Centre for Autism and Theology.
The artwork for this podcast uses the Centre for Autism and Theology Logo, created by Holly Russel
Creators & Guests
Host
Ian Lasch
PhD candidate at the university of Aberdeen researching autism and the Imago Dei
Host
What is Autism and Theology Podcast?
The Autism and Theology Podcast is a space where we engage with the latest conversations in the field of autism and theology, share relevant resources, and promote ways in which both faith and non-faith communities can enable autistic people to flourish.
Our episodes are released on the first Wednesday of every month. We have a variety of guests who are related in some way to the field of autism and theology. Some are academics, others are people with life stories to share, and some are both!
We also release CATChat every third Wednesday of the month. These are shorter and more informal episodes where your hosts will share news and give you as listeners an opportunity to ask questions and share your stories.
Zoe: Welcome to the Autism and Theology podcast, brought to you by the Center for Autism and Theology at the University of Aberdeen.
Krysia: Hello and welcome to this episode of the Autism and Theology podcast. I'm Krisha and it's great that you've joined us this week. This podcast is a space where we engage with the latest conversations in the field of autism and theology, sharing relevant resources and Promoting ways that help faith and non faith communities enable autistic people to flourish.
This podcast is run from the University of Aberdeen's Centre for Autism and Theology, which we've shortened to CAT. If you'd like to access the transcript for this episode, it can be found via the link in the show notes. And today's cat chat, we're going to have you talking about being neurodivergent, neurodiversity and autism.
What it's like to be a postgraduate student
being neurodivergent. And I guess a great place to start would be talking about how kind of how we've experienced it kind of be in the thick of it, or just having come out of it. And I wondered if anybody would want to start.
Zoe: Ian, it would be really interesting to start with your experience as a distance student researching autism and being autistic yourself.
Ian: Yeah, I, um, I, I recognize that my being part time being distance means my experience is somewhat outside the, the, um, the most common experience.
I don't want to say outside the norm since we, uh, norms are right out. Right? Um, I recognize that not everyone has that. The same experience I do. So, so for me, the most difficult thing, um, just being autistic has been managing everything, right? Um, you know, if I struggle with executive dysfunction and I've added something else to my plate, in addition to full time work responsibilities, in addition to raising children, et cetera, et cetera, then it's just finding time for it all and, and, um, you And making sure that I get done what I need to get done, which I am not always successful at, um, as may come as a shock to many people.
Um, but it's, um, it's definitely a juggling act, uh, to use a metaphor. And one of the most important things, uh, that I always try to keep in mind, we tend to, is, is, is a, is a, an analogy that I heard a long time ago, and I can't even remember who told me this. But they said, um, we tend to think of, we tend to think that we're juggling and there are certain things that we can't let drop, certain balls that we can't drop.
So we think, if family is our most important, then we can never drop a family related ball, right? But the most important thing, and this is not to say that family isn't important, but the most important thing is recognizing which balls that you're juggling are glass and which are rubber. Um, and, and so.
Recognizing those things that really need my attention, even if it means putting stuff that is a higher priority overall on the back burner. So, like, family is my most important priority, but that doesn't mean family always comes before everything, because that's not obviously not sustainable. Right? Um, so figuring out which which things demand my attention immediately and that's.
It's difficult and there's no, um, I don't want to sound pessimistic, but there's no level of accommodation or support that can do that for me. Right? Um, and that's just, it's just difficult. And that's the, that's the, to me, that's the hardest part. That's my two cents.
Zoe: I think that's such an interesting point you make about like the different, like, it's so easy to be like, these are my priorities and I'm not, I'm not gonna, um, put anything before these things, but it's that, it's so helpful to think of, like, what is gonna break if you don't give it attention, and what can actually, like, stay sustaining itself, and, yeah, that's a really helpful way to think about it, rather than just being like, this is the order of most important things in my life, and, um, like, it's not linear.
That's such a really helpful way to think about it. Um, obviously my experience is as a dyslexic postgrad student, not an autistic postgrad student. Um, but I think as I've probably reflected on a little bit in this podcast, um, things I probably struggle with the most are just the intensity of like keeping up with conversations and seminars or like with readings and stuff can be such a challenge.
Um, and one of the things I find the most difficult is access things. accessing support for my dyslexia. I had a terrible experience in my undergrad with having to fill out loads of forms and now I'm just scared to go to student support, . Um, Yeah, those are some kind of like challenges I faced, but I think something that definitely being involved with the Centre for Autism Theology, it really helps me to see how the way that I think makes my research better because it's unique and authentic to me.
And that's been such a helpful thing to remember in my own neurodivergent postgrad experience and also recognising, you know, that I'm not going to be able to function, kind of like what Ian was saying, I'm not going to be able to function 100 percent all the time. There's some days where it'll take me like, I don't know, I'll do a reading for 10 minutes and I just can't face reading any more of it so I just have to leave it and accept that I'm not going to struggle through that and like I can come back to another time where I'm going to manage it a bit better.
But that's sort of like understanding your own thinking and seeing how that benefits your work but also where you kind of need to practice a bit self care and be more gracious towards yourself. Um, but yeah, definitely like, I think the student support side of things and the lack of like community around like other dyslexic students and universities has definitely been a big challenge for me, I would say.
Um, but yeah, Krisha, coming back to you, what's your experience of neurodiversity and post grad life?
Krysia: I guess for me it's been quite mixed. Um, I found myself particularly with people who were involved with my PhD at the end were really supportive. And I found that really, really helpful, especially when people have got to know me.
I think when I first started out people, I had a completely new superfluous routine to that. I had obviously people I hadn't worked with during my masters and I hadn't really met before. And I find it takes me a long time to figure out how people work, be it kind of face to face or online as kind of, and I think I, with things being online, especially where a lot of my PhD, I did a lot of my conversations with people and kind of data collection online, and I had a lot of supervision online.
It's a bit harder to kind of clock sometimes if there's a, what, if the thing's working. Um, so I guess for me, it would have been more useful if we hadn't had a giant pandemic, but actually obviously that's. Kind of, I guess one of the things I was navigating was how to find out what things work for me in an environment that works for me.
Um, amongst the backdrop, if that makes sense. Um, and I guess the other thing which I found really helpful was there was, when I first started my PhD, there was quite a community of people who all started at the same time. And that was quite helpful, even if they weren't, I was the only, opening neurodivergent student amongst the four of us.
Um, but it was quite useful to have people kind of all starting at the same time with the uncertainty that was going on all at the same time. Um, and I do have to echo Zoe's thoughts around form filling, especially when we're, so I'm obviously based in a UK context and every year I had to apply for DSA with a really long form because I was part time.
So they don't just let you kind of click and kind of forward everything through. You had to go fill out the whole. thing top to bottom every single year for six years and that was always quite difficult because I find forms quite difficult, um, and I could see how that would be a barrier. There were many years where I filled out the form late, or I needed support to fill out the form, or I had to ask what I put in what boxes, because I didn't know what to tick.
So I think there's certainly things around the way we do university, which aren't necessarily conducive for neurodivergent people to be part of. the community even if we try, obviously there's lots of things that we can do but it's that bureaucracy sometimes can be really really difficult.
Zoe: Yeah and it's such a interesting one just like jumping on the back of the DSA stuff like I've not even done it during my PhD because I just can't face the forms and like to me I'm just like, the thought of doing it is horrible.
But I would also say like, as much as that's a problem with the forms and with the system, you also do kind of need to take that ownership on yourself to be like, actually I just need to suffer through this form to get what I need, which I just haven't done. But I guess that thing, it's like also knowing where to get that support to do these things. And that can be a challenge.
Krysia: Definitely, especially some of the stuff I'm now trying to set up for my job, some of the, I'm having to do tasks which I find quite difficult to get the, to find people to be able to support me and enable me to do my job the best I can.
So, um, my voice and it's really helpful that I kind of now know what I want. When I started in my underground many years ago, I didn't know what I needed. I didn't know what I, yeah, what would be helpful. And I guess even when we think about kind of different settings as well. So when I used to NHS before I came back to do my master's and my PhD, I didn't know that I, Actually, some things would have been helpful as reasonable adjustments.
I just had no clue, and I just plowed in and then burnt out after about 11 months of working full time in a really busy office. Um, so I guess there's also the kind of thing around, it can take some time to know what you need, but if you know it, and when you know it, it's actually really, really powerful to be able to know that.
And it's also about finding the, sometimes environments don't work out, and sometimes it's a reflection more on the environment and the bureaucracy and the system rather than on you.
Ian: Right. And I, I, I do not want to sound woe is me because the truth is I feel like I'm managing okay, even though I am perpetually feeling like I'm behind, but that's just sort of how I operate, right?
Like without a deadline, I am not productive. Um, but. One of the things that I want to say about Neurodivergence and, and autism in particular when it comes to accommodations is that there are, my experience has been that there are a ton of folks who are willing to work with you in the ways that you need to be worked with.
I have been really, really impressed with the level of support that is available. That said, for autistic people in particular, and neurodivergence in general, there are ways in which the system could not be set up worse than it is, right? And I, again, this is not, I'm not trying to say woe is me. I'm not trying to say that there even is necessarily a better way to do it because in some ways you can't, you can't expect an entire administration to be proactive with every single individual student.
That's not a reasonable expectation. But that's If you're autistic and you struggle with autistic, um, inertia, right? Like it's difficult to get things started. Then you see this overwhelming process of all the things that you need to go through for reasonable accommodation. And it's like, well, I'm not doing that.
Like I can't. I don't, I don't know how to break that down into discrete steps. So that's just totally overwhelming. And if you struggle with executive dysfunction and you've got this big long form that is an overwhelming amount of information and you have to find like track it all down and that sort of thing, then it's, it's, it's.
It's really, really difficult to do that. And if you're, if someone is just asking you blue sky question, what support would be helpful to you? And I'm not even capable all the time of understanding my own bodily reactions to stimuli, right, or the way that I'm feeling inside, how on earth am I supposed to understand what reasonable accommodation is going to actually facilitate my flourishing?
So it's not. I'm not pointing fingers, and I don't mean to say that this is anyone's fault or that this is necessarily an injustice, but there is a way, and I, and I don't want to paint autistic people in particular as victims or anything. It's not that we have it worse, but there is a sense in which the system as it is set up, um, is, is particularly difficult to navigate for an autistic person, in my, in my opinion.
Krysia: Now I would 100 percent agree with that. There's just, there are demands put on us to do things that just sometimes, or some people a lot of the time, is just not possible. And there's this kind of, what I was saying before, very circulate, where I'm having to do all the things with support, I'm having to find it from other places, particularly from colleagues, to be able to then do, get the support that I need.
to be able to do my job. So it's quite a kind of square logic reasoning, almost, of kind of having to go around the houses to get what you need. And there are some of us who have quite a good support network, and we can able to tap into friends, colleagues, family, and ask people to kind of help out. But there's also going to be some of us that don't have those resources to pull on.
And I'm an acute, I'm acutely aware that that in itself is a barrier that Perhaps shouldn't exist that there's this inequity when actually education can be such a force for social good.
Zoe: Yeah, and I think just kind of adding to that, like what you're saying just makes me think of this idea like kind of relating it to faith and church and some of the stuff I've been looking at.
Um, we often expect neurodivergent people to do a lot of extra work just to get to vaguely the point of where other people are at but in the process of doing that you're then draining yourself and using up your energy just so you can get to the same point as other people and it's that kind of like idea of leveling the playing field actually just doesn't work because you've used so much energy to get to that point.
Um, and I think it kind of ties in a lot to like what we expect of people in um, churches and faith communities as well like and I think that's In a lot of churches and faith communities, there's an expectation that people will put in that work themselves to be able to, I don't know, like, even just get to church in the morning, um, to read their Bible, to do their, um, prayers or whatever.
Like, it's that expectation that people will just put in the work that they need to, um, to get to that point. And sometimes the work itself that needs to go into that just makes it a lot harder. even more of an impossible task. Um, and I think it's, yeah, this is where like, there's so much that relates in education and faith life as well.
Ian: Yeah. And I mean, one of the things, so I, I guess one of the patterns that I have in terms of support and accommodation is actually my wife, who is really, really good about saying, you seem like you seem like you're having a tough time right now. Do you need some, do you need a minute? Do you need to go take a drive?
Do you need, and like some of the time I probably should take her up on that and I don't, but just having someone who is Clearly looking out for my needs, even if I'm not capable of recognizing them, makes such a difference. And I just think about what that would look like in the church if we were able to do that, if we were, if we were proactive about trying to make accommodations, about trying to, um, you know, make sure that, uh, we don't have fluorescent lights on constantly, that it's not, You know, overwhelming amount of light, um, that we have more natural light, you know, to the extent that we're, that it's possible that we make sure that the sound system isn't absolutely blaring, um, you know, just different ways of, um, that we created space in our liturgy and in our communal life for processing, right?
So that we don't feel like we have to fill every second with speech, um. Which is not very much, not our pattern, right? So I just think about ways in which we could be more proactive about being more, um, supportive and accommodating. And we just don't really do that because, because the expectation is, well, people need to be self-advocates.
And I'm not saying autistic people don't need to be self-advocates, but sometimes. They're, they're, they just don't even, I mean, sometimes it's hard to understand what you need until someone anticipates it for you and says, Hey, would this help? And I'm like, Oh my gosh, yes, it would. That's life changing.
Thank you so much for that. Like it took me four years to realize that the overhead fluorescent lights in my office were giving me a headache every single day that I spent in the office and bought a couple of floor lamps and a desk lamp. And now I don't have headaches every single day. Like. Somebody, I mean, maybe, I don't know, maybe not that there's anything necessarily that somebody could do about that.
But if you're building a new building, maybe don't put fluorescent lights all throughout. Right? Like, there are just all sorts of things that, that it takes me a while to figure out, um, that I feel like sometimes people might. put it together before I do.
Krysia: I guess one of the things, and I'm going to slightly pull it back to some of the press graduate experience I found when asking for things that might support me in my viva was a list that another autistic person had written online of advice that they had asked for in their viva, and that they were recommending.
And I'm also wondering, wondering how that model of, Autistic people advocating and other autistic people then reflecting and going, yes, that's also like me, or maybe I want that a little bit different because obviously there are multiple autistic experiences, there isn't just one, is a way to kind of empower people.
So it's coming from autistic and other neurodivergent people and we're talking about other neurodivergences, um, that there's that kind of from the source. Information and advocacy, and obviously it can be really useful with other people who might have had experience or have family members or other work with autistic people, but actually, I've always found the best information always comes directly from the source.
So we need to be almost encouraging. And I guess this is where it's a little bit of a chicken egg situation, loop situation, where you want to be encouraging people to self advocate, but at the same time we need to ensure that people are not giving out an inordinate amount of emotional labour within the cultural context that they're sat in.
So in this case, basically churches.
Zoe: Yeah, and that's where, like, hopefully, the Centre Autism and Theology can be part of, like, building those resources. And this is also why we really encourage people to write into the podcast and let us know if there's, um, things that you want to share, things that you want us to explore with, um, each other or other guests.
Ian: I think that's exactly right. I think that that have sort of crowdsourcing all of these resources would be would be immensely helpful. And I don't think it's limited to postgraduate research. I think that. So I just recently, um, on October 22nd was part of a webinar about, um, autism and the Imago Dei.
And my portion was about practical sort of suggestions for church communities. And it was like hugely well received. And I don't say that to blow my own horn. I wasn't saying anything. unique, or anything that was entirely original to me, it was all a sort of bunch of questions that I had for church communities that I had come across as sort of in my reading, in my research, that other people have come up with, and so that sort of thing.
And I just am cognizant of the fact that I go through the same thing when I sit down in Uh, meetings with my son's teachers, right? And they're, and we're trying to figure out what does, what do reasonable accommodations for him look like? And it's like, I wish there was a list of all the possible reasonable accommodations, right?
Because one of the ones that we came across, we just happened to stumble across, which was if he doesn't, if it's not specifically practicing handwriting, he's allowed to type. And for him, that removes such a source of anxiety because he gets so anxious about. Um, making sure his letters are perfectly right.
And so that was, that was an accommodation in, in a school setting that I would never have thought of. And we just sort of happened across and there's just all sorts of things like that, that I think people don't have at their fingertips and would like to. And I just think, yeah, what we need is more, more lists of accommodations that people can try.
Um, so that you can ask, would this be helpful?
Zoe: Yeah. That's such a good point.
Um, this has been such an interesting conversation and we could go on and on about this for ages. If you have any feedback or any more reflections on what we've shared, please get in touch with us at cat@abdn.ac.Uk. We'd love you to join us again on the 4th of December where Ian will be having a little festive episodes with, two of our researchers at the Center for Autism and Theology, which we're really excited about.
Thank you for listening to the Autism and Theology podcast. If you have any questions for us, or just want to say hi. Please email us at cat at abdn. ac. uk or find us on Twitter at AutismTheology.