Studying on the Autism Spectrum

Contents: Everyday student life, challenges, needs, strategies, call to action.

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

What do you particularly like about studying at Bielefeld University?

I like the fact that everything is on one campus. I studied two subjects for my bachelor’s degree, and I think it would have been very stressful if I’d [for example, studied in Münster and] had to travel halfway across the city. I also think there are loads of activities outside of my studies, such as the networking group ‘In the spectrum’ or the University Sports Bielefeld. As far as my studies are concerned, I like the fact that there are lots of young lecturers (on my course) and that the teaching is generally very engaging. 

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

At the start of my Bachelor’s degree – I studied for a total of eight semesters on the Bachelor’s programme and am now on my Master’s – I hadn’t really noticed the strain yet. At that time, everything was still taking place online, and I didn’t have to leave my living room to study. But when face-to-face teaching resumed with the same workload, I realised just how challenging and exhausting it is for me to be around so many people. I realised that I simply couldn’t concentrate for that long – whether sitting in a seminar room or attending a lecture. Whilst at home I used the breaks between sessions to lie down on the sofa and rest, on campus I have to walk between the different rooms and make sure I can grab a bite to eat and go to the loo in between. As a result, I usually don’t have any time left to rest even a little, which means I can only attend a maximum of two sessions a day. So it’s no surprise that I’m studying at a much slower pace than other people.

I simply get exhausted very quickly by everything I do. The workload – the amount of material I have to learn or texts I have to read – is usually incompatible with attending weekly seminars. 

Do you leave seminars as soon as you realise you can’t concentrate any more?

At some point, I just switch off mentally. But I can’t bring myself to leave the lecture – even though I’d love to.

Is there anything lecturers could do to make you feel more comfortable about simply leaving?

Sometimes fellow students leave the room early, but that’s always very noticeable. I then get the feeling that some lecturers react with great annoyance. Given that I have to sit exams, I don’t want to leave the seminar regularly. I often attend smaller seminars, too, where the lecturers get to know you personally. I’d be worried that the lecturer might then have a negative opinion of me. It would therefore help me if (some) lecturers were aware that 90 minutes is a very long time. I’ve often found that lecturers begin a session by making a point about gender-neutral, anti-racist language and pointing out that students can leave the room when sensitive topics are discussed. I would like to see this expanded to include the option of leaving, even if you simply have no energy left. 

Are there any other barriers you’ve encountered during your studies?

Due to selective mutism, I’m unable to participate in oral certificates of achievement, which is why it’s sometimes difficult for me when lecturers require oral certificates of achievement only. When it comes to coursework, it’s not as easy for me to apply for disadvantage compensation as it is for exams. I’m then told: “Just ask the lecturer if you can do something else.”

But then you always have to come clean straight away, saying “I can’t do that”. And then you’re told: “Oh, don’t make such a fuss. It’s only a coursework assignment.” I’ve heard that quite often. 

Do you then decide to drop out of the seminars because you can’t meet the requirements?

I’d do that now, but I didn’t in the past. Either the lecturers gave in after lengthy discussions, or in one seminar there was a group assignment and my part of the presentation was just five minutes. So I thought I’d manage it somehow. In the end, though, I was lucky that, for once, it took place online, and that made it a bit easier because I didn’t have to see anyone. 

What specific needs do you have in terms of accessible higher education?

I can’t complete oral assessments because I suffer from selective mutism in stressful situations, so I either rely on disadvantage compensation or am sometimes lucky enough that lecturers offer different ways of completing assignments. Otherwise, rooms with fixed tables and chairs are difficult for me because you end up sitting so close to one another. That usually stresses me out so much that I can’t listen properly anymore. When lecturers give long monologues, I often struggle to follow them if what’s being said isn’t supported by visual aids. I can’t hold on to the information for that long, and by then my brain is practically full. I also regularly have issues with sensory stimuli, such as an environment that’s too noisy. At today’s seminar, for example, some repairs were being carried out next door, and it was really loud. I ended up only hearing that noise. 

What’s more, particularly in the Y Building, there are rooms without windows where the ceiling lights are extremely bright. If the walls are also painted completely white, it reflects the light even more. That’s very tiring for me, as is the lack of fresh air due to the absence of windows.

You mentioned earlier that you usually feel cramped because of the seating arrangement. Have you already come up with any strategies to deal with that?

Fortunately, I haven’t had that many sessions in rooms like that so far. The last time I had one, the lecturer thought it was a bit silly themselves and looked for an alternative room. Otherwise, I’ve usually tried to sit at the edge so that there’s only one person sitting next to me. But that only works if I arrive early enough. I’ve also often skipped the first few weeks because I knew the room would be less crowded as the semester went on.

You started your degree during the online semester, and at the time you hadn’t even realised how much of a strain your studies were putting on you. Would you still say that your disability influenced your choice of where to study or which degree programme to take?

Definitely! I’m from this region and couldn’t imagine moving away. So I had to find a degree programme that was offered in the OWL region. 

Did the fact that it’s a campus-based university influence your decision to choose this university?

For a while, I considered studying something else, which would have meant going to TH OWL in Höxter. But the distance would have made that unfeasible for me – the university also has several campuses. That’s why the fact that Bielefeld University is a campus-based university really won me over.

You mentioned earlier that you’d already developed strategies for choosing where to sit. Are there any other strategies or strengths you’ve picked up during your studies?

I’m actually very organised, so that I’m prepared for just about anything. For example, if I don’t know where a room is at the start of the semester, I look it up in advance. You can also check the electronic course catalogue (ekvv) to see how many people are registered for a seminar and how many seats the room has. That way, I can prepare myself for roughly how full it’ll be. Otherwise, I’d say that when choosing my modules, I make sure I don’t take on too many at once. In this regard, I’ve also developed better planning skills over time. However, I must also say that this was a bit more difficult during my Bachelor’s degree, as there was a place allocation process for many courses. Back then, I had no say in the number of courses I took and consequently sometimes ended up with four in a single day. It was clear to me right from the start that I wouldn’t be able to manage that.

I’ve also learnt that I can be better at accepting offers of help or seeking them out more specifically. That’s why, for example, I’ve sought advice on disadvantage compensation from the Central Accessibility Point (ZAB) and have also already visited the Student Advising and Counselling (ZSB) service. Simply because it’s necessary, and I wouldn’t be able to manage things so well on my own. 

Do you make use of any other services besides those offered by the ZSB and ZAB? The ‘Writing Week’, for example? Or are you more concerned with organising your day-to-day life than with your studies?

I’d say both. When the ‘Writing Week’ was still mainly held online, I definitely took part in it. But structuring my seminar papers is actually something I manage quite well on my own.

Some lecturers go through the seminar syllabus with the students at the start of the semester. Is that something that helps you organise your studies?

Yes, absolutely! Especially when it comes to planning coursework and exams, for example. It allows me to consider at the start of the semester whether I want to complete an assignment for that module component.

Do you place equal importance on the organisation of the electronic course catalogue (ekvv) or the Moodle course?

Actually, yes. I find the standard learning space absolutely dreadful. It’s so confusing. With Moodle courses, I always find it very helpful when they’re organised by topic or session. That allows you to jump straight to the relevant session to review topics again. 

Many students are concerned about how to communicate with lecturers about their own disability, chronic or mental health condition. How do you deal with this?

That’s changed a bit for me recently. In the past, I avoided bringing it up as much as possible. Nowadays, I tend to discuss it more with fellow students. With lecturers, on the other hand, it depends very much on how I perceive the person – whether I feel they’d be able to handle it well. So far, I haven’t been in a situation where I’ve had to disclose my disability. 

How can lecturers help to make you feel comfortable discussing your disability when necessary?

Simply by offering the option to leave the seminar if needed. A brief mention during the introductory session would suffice. So far, I’ve only ever experienced this once, when a lecturer offered to have open discussions about students’ concerns – such as parenthood or an illness. That creates a welcoming, trusting and open space for communication. 

Could you finish the following sentence: “Many people think that … and I’ve always wanted to tell them …”?

Many people think that I’m not interested in participating in the seminar. I’ve always wanted to tell them that I simply can’t speak in front of a large group of people.

Many people also think that I’m unfriendly, and I’d like to tell them that I often do this to conserve energy, not on purpose. But it then looks as though I have no interest whatsoever in interacting with people or in being where I am. 

Finally, is there anything else you’d like to share with lecturers?

In my experience, whilst lecturers often take into account that students are also parents or carers for relatives, they very, very rarely take into account that students have a disability, a chronic condition or a mental health condition. I often feel overlooked in this regard. Recently, for example, I attended a seminar that addressed the topic of the Holocaust. Yet one of the groups of people who were among the first to be sent to concentration camps – people with disabilities – was not mentioned. In another list of forms of hostility, homophobia, sexism, and racism were mentioned – but ableism was left out. As someone affected by this, I simply often feel invisible with my problems.

Another thing that often makes me feel overlooked – and consequently disadvantaged – is that teachers still frequently judge disability by outward appearances, and I apparently don’t look as though I have a disability. That makes it even harder for me to deal with it or to communicate it. Because when I do pluck up the courage to say that I have a disability, I get responses like: ‘You don’t look it at all’ or ‘I wouldn’t have thought so’. I find that completely inappropriate, especially on a social sciences degree course.

Thank you!