Studying on the Autism Spectrum, with Depression and Post-Traumatic Stress Disorder (PTSD)

Contents: Everyday student life, organising your studies, needs, strategies, call to action.

The transcript was compiled from interview recordings. The text has been edited and refined for clarity. It was then reviewed and approved by the students involved.

To begin with: What do you particularly like about studying at Bielefeld University?

I like the fact that the university itself is a very non-judgemental space, where my disabilities aren’t necessarily viewed negatively. It’s simply accepted that they exist. I also like the fact that many things, such as the old main building and building X, are very well-organised and structured. That sort of thing is really helpful for my day-to-day life at uni. Overall, though, what I like best about the uni is that it’s a progressive space where people generally treat one another with great respect.

Would you like to tell us a bit about your day-to-day student life as someone on the autism spectrum with depression and PTSD?

At the moment, I attend university in person two days a week. I have to say that working on campus is still a bit more tiring for me than working from home. That’s why I always try to organise things so that I have fixed days when I’m at uni and at home. That makes it easier to manage.

Apart from the fixed days, are there any other examples of things that help you in your day-to-day student life?

One thing I really enjoy doing is planning the ‘when’, ‘what’, ‘how’ and ‘where’ in advance. When it comes to university, I prepare thoroughly for every module – usually at the weekend. For me, having a structure is very important, as otherwise I either feel very stressed or might eventually run out of energy. My energy levels aren’t always the same. So, to avoid those problems, I simply prepare a lot of things in good time.

Do you always set aside specific days with deadlines you’ve set yourself?

I’d say it always becomes clear which task suits me best and which I enjoy the most. So it might be that I tend to read texts at the weekend, as that’s when I’ve had the most time. I tended to do other tasks in the evenings during the week after university, because I could approach them with a different ‘mindset’ then. So I always decide these things based on how I’m feeling. I don’t know if that’s necessarily easy for other people to understand, but I organise my tasks according to my available resources.

You’re studying a combination of several subjects. Do you notice a difference in how the various subjects are structured?

Yes, definitely. Physics is by far the most structured subject. I don’t think it could be much more structured than that. For each semester, you’re given a fixed, unchangeable timetable setting out what each week will look like. You then have to stick to it exactly. Personally, however, I prefer the slightly more flexible model. In my case, that’s History, where you can choose between four or five seminars and organise your schedule yourself. I actually get on very well with that, because it offers more opportunities to choose topics you’re interested in, whilst also potentially drawing on any initial skills you have that can help your own understanding.

Given your preference for flexibility, I’d be interested to know whether you also attend online seminars?

Not at the moment. I’ve always enjoyed attending them – even after the pandemic. But at some point, there simply weren’t any more. Unfortunately, not all subjects were equally well-suited to online teaching, which is why I felt very much left to my own devices, especially at the start – particularly in physics. During the pandemic, online teaching there consisted solely of weekly or fortnightly online Q&A sessions. Apart from a few videos on experiments, you had to learn the material entirely on your own, which I found difficult to cope with. In my opinion, the faculty handled this very poorly, which was one of the reasons I changed my subject.

Were you able to voice these difficulties?

Well, I didn’t really voice them, because it was more or less the norm. There was no desire for a proper discussion about it or for general criticism to be voiced. In the end, we were given the lecture notes and that was it. We then had to submit completed assignments every week, and finally there was the exam date. That was the lecture. Completely unstructured and therefore, for me – and probably many others – extremely detrimental.

Did the lecturer make any comments before handing out the lecture notes, or was it left at just the notes?

It was exclusively the lecture notes. Every few weeks, we could ask the lecturer questions, which they then answered via Zoom. Every now and then, there was a video about the experiment. So it was a very, very self-directed way of learning, which ultimately didn’t go well at all. One reason for this was that there was very little structure to it – when were we supposed to study what? Furthermore, the lecture notes aren’t necessarily the best way to learn anything, as on the one hand they’re overly detailed, whilst on the other they don’t necessarily contain all the relevant information. Consequently, I didn’t do very well in the exam.

Apart from that bad experience, would you like to see more online teaching?

I don’t think so. I get on well with both. Online teaching, of course, always has the advantage that I can mainly study from home – a place where I feel safer. For me, being on campus at uni is inherently more stressful and uncomfortable than being at home. But I can also understand why some people prefer face-to-face teaching. Although I wouldn’t insist on more online teaching per se, I’d quite like the option from time to time. Then I could perhaps just pop in for a bit if I don’t really feel like travelling to uni for a particular session.

Earlier, you mentioned that you go to uni two days a week. Does that mean you’ve packed those two days completely full with sessions?

No, not at all. The thing is, I always have to keep an eye on my energy levels. So it wouldn’t be at all beneficial for me to pack those two days completely full. I’ve organised it so that on my university days I have six hours of seminars each day. That might sound like a lot to some people, but personally I find it quite ‘manageable’.

And then you use the rest of the week for your work and catching up on the seminar material?

Exactly. I work 19 hours and then do my homework for physics and computer science. It’s not actually that much revision.

What are the hurdles or obstacles you face in your studies?

Above all, poor organisation. That’s by far the biggest problem. If something is poorly organised or structured, I always find that very hindering. Or even if it’s not clear how something is structured. Consequently, my biggest criticism is when lecturers don’t disclose what the seminar plan is and when which reading material is to be covered, or if these haven’t been uploaded in advance. I’ve actually had lecturers who’ve only uploaded these materials the day before, in some cases. But I need time to prepare, and I don’t always have the energy at short notice. So I’d appreciate it if all the materials were made available in advance, so that I can plan them properly into my daily and weekly routine.

So, to summarise, would a well-structured learning environment and enough time to work through the seminar content help you?!

Yes, but it goes a bit further than that. Not only should the learning environment be well-structured, but information such as the requirements regarding coursework and examination performance should also be communicated to students at the start of the semester. That’s simply information I’d like to have early on. I’ve also experienced lecturers only providing such information in the last or penultimate week of lectures and only then announcing what the assessment will entail. That’s a bit late to prepare for it.

Are there any other hurdles or obstacles that you face or have faced?

Lectures with large numbers of people are a particularly big hurdle. Not necessarily because I’m afraid of people, but rather because of the noise. Somehow, people are always talking and something is always happening somewhere. My brain struggles to distinguish between different sounds. That means if people are whispering in the far corner, to me, it’s on the same audio track as the lecturer who’s speaking up front. Consequently, I still have to try and filter out the relevant information somehow, and that’s very tiring. You don’t know what’s actually going on. To make sure I don’t lose the thread or fail to understand anything at all, I usually sit towards the front.

Have you developed any strategies during your studies to help you get round the obstacles I’ve just mentioned?

To get round the problem with the background noise, I actually always try to sit at the front in lectures or seminars, and outside these sessions I typically wear headphones to avoid the stressful overlap of sounds.

To tackle the issue of a lack of communication about assessment methods at the start of the semester, I try to use the module handbook as a guide and read up on what to expect. I always do that before the semester starts anyway. Otherwise, I find that the best solution is simply to talk openly with the lecturers about it. I explain my disability and ask, for example, for greater clarity regarding how assessment requirements are communicated, as otherwise I don’t understand them. The lecturers I’ve raised this with have actually always reacted quite positively. Every now and then, however, there are also lecturers who ignore it or don’t respond. But that’s quite rare.

As you said, you’re already open about your autism and the needs that come with it: how can lecturers still help to make you feel more comfortable about addressing these openly?

That’s a tricky one, as I don’t really expect much from others. I usually say something in the hope of getting support, but I’ve also had negative experiences with this before.

In terms of communicating with lecturers, or in general?

Basically, there was a situation where I revealed in a seminar that I’m autistic. A fellow student then replied that autism doesn’t exist and that, therefore, there are no limitations. The lecturer didn’t say anything about it. I can cope with it, mind you, but it would have been nice if the lecturer had taken a stand.

Do you otherwise feel that the lecturers create an environment in which you feel comfortable enough to say that you’re autistic?

Well, as well as having an autism spectrum disorder, I also have depression and post-traumatic stress disorder. As I said, I actually always feel comfortable talking about it, or bringing it up. That’s why what I actually took away from the situation I described earlier is that I need to talk about it even more and raise awareness. So that people who have no experience of autism, depression or complex post-traumatic stress disorder can understand what it actually means. I simply try to be someone people can talk to, but I also expect the person I’m speaking to to listen and not react negatively straight away. Apart from that one exception, it’s always worked quite well so far and I get very positive feedback.

Would you mind telling us what you tend to bring up in such situations?

Well, normally I only bring it up with people if the situation calls for it. But when I do, I stick strictly to expressing my specific needs. Recently, for example, I had a feedback meeting with a lecturer. It was about a report I’d written. The lecturer told me I should add something ‘creative’. By ‘creative’, I imagine things like drawing a picture or making origami. So I told the lecturer that I’m autistic and couldn’t picture what they meant by ‘something creative’ – it could mean all sorts of things. I then asked them to define it for me. The lecturer then gave me two examples, after which I immediately had a clear idea of what was required.

Another typical issue is that I’m off sick quite often. In such cases, I usually contact the lecturers by email and explain my situation. I then ask them to send me the seminar materials for the period I’ll be away. That usually works very well.

Now, a slightly more fundamental question: would you say that your autism, depression or PTSD influenced your choice of degree programme or location?

My choice of degree programme did, to some extent – but my choice of location, not so much. I chose the university because it’s more or less in a place I’m already familiar with. But, as I said, I started out studying physics. That’s when I realised the workload was very heavy – in some cases you have to put in 50 to 60 hours a week – and I simply can’t manage that. So I looked for a degree programme where I could manage my own weekly hours. Where I can decide for myself: this term I’ll do 40 hours a week and next term 30. So I decided to study a humanities subject as my main subject.

Does that mean your degree now consists of one structured subject and one that’s very self-organised?!

Yes, the combination works well together. The minor subject provides me with a fixed structure, around which I can then build the more flexible structure of my humanities degree.

Do you make use of any university services or facilities that support you with questions or concerns?

I actually have a lot to do with the accessibility services (ZAB). I’ve been more closely involved with them for the past two years now. I take part in the peer mentoring programme; I’m a mentor myself, but I also receive support if anything is unclear or if I have any problems. Having people to turn to is simply a huge source of support.

I’ve also been to the Student Advising and Counselling (ZSB) a few times, as they’re more understanding of concerns or issues relating to my degree or even across different fields of study.

These are the two university services I’ve made the most use of.

Do you also use the ZSB for help with planning your course of study?

That’s one thing. They also advised me at the ZSB when I changed my minor subject.

I’d like to ask you to complete the following sentence: “Many people think that … and I’ve always wanted to tell them …”

I think there are lots of ways for me to complete that.

One of the first things that springs to mind about autism is: Many people think that autistic people can’t make eye contact with others. And I’d like to tell them: Yes, you can. The less stressed I am, the easier it is for me. But even if I feel pressured to do so – for example, amongst non-autistic people – I can still manage it to some extent. However, when I’m with other autistic people, I wouldn’t focus on ‘making eye contact’. It would simply be unnecessary.

Another thing is: many people think that autistic people are somehow a bit eccentric or have a certain look about them – as if you could tell from the outside that someone is autistic. Personally, I’ve met a great many different autistic people, and it’s a very diverse group. You simply can’t tell by looking at anyone, just as you can’t tell if someone has bipolar disorder, post-traumatic stress disorder or schizophrenia. None of these things are easy to spot.

Can you think of any other prejudices regarding post-traumatic stress disorder that you come across?

One thing I often encounter is people’s fear that they might trigger something in me. The fact is, though, that not all cases of post-traumatic stress disorder work in the same way. Not everything can be triggered by just anyone in any way. For me, it’s simply an interplay of many different factors that other people can’t really see. Not even I can. The decisive factor, however, is usually my stress level. Consequently, avoiding certain topics wouldn’t help at all. This can, in turn, look very different for other people with post-traumatic stress disorder. I’d say that this repeatedly highlights the need to simply talk very openly about individual needs.

Finally, what message would you like to share with teachers?

Be as open as possible, and stay that way. Just approach situations without judgement and let yourselves be surprised. As a teacher, you don’t need to have a magic formula to solve every problem. Most people know very well what they need themselves: whether it’s three extra weeks for the seminar paper or, as in my case, having the term schedule made public. I believe it’s important to trust that the person themselves has a reasonable idea of what they need. That doesn’t patronise anyone either. So: always remain open-minded and listen to what the person’s problem is and what they need as a solution. 

Is there anything else you’d like to mention? 

One thing I really like, and which is now becoming more common, is quiet rooms. At last! We simply need far more of these at universities – places where you can retreat and wind down a bit. Especially when I’m stressed, I don’t always feel like being there or have the energy for it. Particularly in the first few weeks of the term. So it’s incredibly valuable to have spaces where you can recharge your batteries. That simply has to be taken into account.

Thank you very much!