The Reality of Being a Student on the Autistic Spectrum

Lauryn Mathews, BSc Psychology

 

Lauryn Mathews is a second year BSc Psychology student and blogger based on the Streatham campus. She has shared her insights into being a student with an autistic spectrum condition.

‘Surrounding yourself with the right people and making your anxieties known so that they can be prevented as much as possible really is vital.’

This week marks Neurodiversity Celebration Week. It is vital to raise awareness of what autism is and how it impacts upon people in different ways, as a result of it being a spectrum disorder. However, let’s talk about my experiences in University as someone with an autistic spectrum disorder and break down some of the stigmas surrounding it. Believe it or not, me not wanting to do certain things isn’t me being ‘rude’, it’s the result of a lifelong neurodevelopmental disorder…

‘So, don’t think that we are boring just because we’d rather stay somewhere we feel safe.’ 

Sensory issues

For me, my sensory issues have one of the biggest impacts on my life. Since moving to University, I have found that not many people understand this. For example, students are renowned for living in messy houses but this is the type of thing that triggers my anxiety, resulting in me having meltdowns that leave me unable to leave my room for days. When I’ve tried to discuss this with the people I live with, I have been made out to be the bad person. This is not the case. We shouldn’t be made to feel like we can’t talk about what is making us anxious. Similarly, another typical student stereotype is that we spend the majority of our evenings out drinking in nightclubs. Personally, this couldn’t be further from the truth. Actually, I’m approaching the end of my second year at University and I have only been to a nightclub twice in my time here. This is because the loudness of the environment, the cramped spaces and my anxiety, because I know that I look and act different to everyone else really prevents me from doing these things. So, don’t think that we are boring just because we’d rather stay somewhere we feel safe.

‘Really, I’ve learned that there’s nothing wrong with not fitting in. I’m different, but so is everybody. There’s no point in us all being the same.’

Social situations and communication

University is all about meeting new people and trying new things that you haven’t done before. For most people, this can be a bit daunting. It really is about throwing yourself in the deep end and honestly, that’s not something that I’ve been fully able to do. While I have taken myself out of my comfort zone many, many times in the last two years, it hasn’t been easy. In fact, it has often left me with debilitating anxiety and the feeling that I’ll never fit in. The thing is, there’s nothing wrong with not making loads of friends. The pressure to make more friends at University can be extreme but really, as long as you have a couple of people that you can rely on, that’s all you need. I know that I’m not great in social situations. I get anxious, my words come out wrong and I can rarely make eye contact. Don’t think I’m not interested in what you’re saying and don’t think I’m being rude and unsociable – you wouldn’t believe how many hours it took to convince myself to leave the house today.

It isn’t all about the social situations either. For many courses, group work is integral and this can be a large cause of anxiety in many – especially if that group work leads to an oral presentation. Honestly, I couldn’t think of anything worse. However, there are plenty of ways to get around this and make the experience easier for yourself. Have a chat with your module convenor and see how you can get the marks while making sure you’re comfortable!

Basically…

I won’t lie and say that University has been an easy experience for me so far. However, with the right support, it has been manageable and up to this point, I have exceeded what I could have ever expected of myself. Surrounding yourself with the right people and making your anxieties known so that they can be prevented as much as possible really is vital.

Really, I’ve learned that there’s nothing wrong with not fitting in. I’m different, but so is everybody. There’s no point in us all being the same.

 

 

 

 

Top Tips for Dealing with Fatigue at University

 

Anna Donnan, second year Biological Sciences student.

Anna Donnan is a second year BSC Biological Sciences student based at the Streatham Campus. She is part of Exeter’s Fatigue Group and agreed to share some of her top tips for managing a degree whilst also looking after your health.

These are the tips for dealing with fatigue while at university that really helped me.

Get to grips with the support the university provides as soon as you can. In particular, having access to the accessible study rooms in the library was great as it saved me a lot of energy trekking around the university for a place to work, and allows you to take a break from the high energy atmosphere on campus which can feel overwhelming when you’re tired.

Get organised with deadlines. At the beginning of term, I try to identify when the big exams and deadlines are. This allows me to pace my work avoiding any massive crams and crashes.

When exams were coming up initial reaction would be to panic, bulk revise and burn out. I now try to work more constructively giving myself at least an evening or afternoon off to rest or sleep.

The fatigue support group meetings are wonderful and it is a great relief knowing other people understand how difficult uni can be with fatigue.

Don’t feel pressure to socialise all the time. Explain to your flatmates your situation. In my case, my flatmates were amazing and fully respected when I said I could not go out.

Bus passes can be a life saver, especially in second year when it’s more likely you’ll be living further from the uni. They also make shopping a lot easier.

Meal planning and healthy eating in general are important for me. It took me far too long to get into a routine, but cooking extra food in the evening for the next day or freezing portions has helped me to keep eating when I am too tired to cook.

It might just be me but cutting down on caffeine and sugar has helped me avoid crashing later in the day.

If you need to, consider all the options available to you. My fatigue started in second year and was at its worse during midterm making keeping up with work very difficult. It is not possible on all courses but I found out that I was able to change to part time study. Although it was a difficult decision at the time, I am very relieved I did for my grades and my health.

 

Managing the Demands of a Degree with a Long-term Illness

 

Cerys Whiting is a final year BA English      student based at the Streatham Campus. We asked her to look back on the last three years and her experience of studying at Exeter with a long-term illness.

“Be kind to yourself, ask for help when you need it, set attainable goals, plan ahead, prioritise, keep it all in perspective.”

 

When I came to university, I was undiagnosed and struggling to manage a condition I didn’t know anything about.

I started my English and Drama degree but soon realised I couldn’t compete with the physical demands from the Drama course, combined with my low grades I made the decision to drop it from my degree title. However, that’s not to say that my disability prevents me from doing the things I want to in life. It was just a part of one of the big life lessons I’ve learnt whilst here; my health is a priority. I used to feel guilty for saying it, the emphasis placed on university was so intense that I felt guilty for not attending a seminar, despite being in so much pain that I couldn’t get from the bed to my en-suite without crying. Acceptance isn’t something that comes easily when you’re diagnosed with a long-term medical condition.

For me, being diagnosed with Fibromyalgia and Joint-Hypermobility Syndrome midway through my second year was both a relief and a challenge. I finally could put a name to the chronic condition that had been hindering me for the last four years, but also found myself faced with a new set of rules. I was discharged back into my GP’s care with the advice to pace myself and research self-help websites. University is a stressful, often lonely time for a lot of students, let alone those with new diagnoses. That’s why I believe the support the university offers through the AccessAbility team is vital. The Fatigue Social Group is a place to feel understood and connected to other students, when you may be feeling so very alone. The sense of community is comforting to many, and the advice offered by the team including Disabled Students’ Allowances (DSA) and career advice, is unparalleled. I know my university experience would have been a lot harder without them.

“Recognising your right to say ‘no’ is a beautiful thing and a vital skill for someone with a hidden disability.”

Having a hidden disability is tough, it’s an undisputable fact that most people will judge from what they can see. From the angry looks from strangers for not offering up seats on public transport, to explaining to friends for the third time that although you might look fine you don’t feel well enough to go out; it all takes its toll. The internal monologue of wanting to push just a little bit harder, prove that you can still do ‘normal’ things, alongside perceived judgement from others can be not only isolating, but incredibly frustrating, and very often leaves you in a worse state. Recognising your right to say ‘no’ is a beautiful thing and a vital skill for someone with a hidden disability. You don’t have to justify yourself to anybody.

There are a number of things I could recommend from personal experience to make managing the demands of a degree a little easier. The primary solution for me is to ask for help when you need it. It doesn’t matter how long you’ve been living with your disability, whether you’ve been diagnosed from birth or just two weeks, there is always support available, so utilise it. I didn’t claim DSA until my third year of university because I felt undeserving of the help available, I’m thankful that I was persuaded otherwise as the equipment I received makes day to day university work a lot easier. I’ve maintained great communication with my personal tutor who is aware of everything going on in my life and supportive of my struggles. Just dropping your tutor a line or two to update them about anything significant that may be impacting your performance is worthwhile. Having an Individual Learning Place (ILP) in place means exam provisions can be put into place and is helpful for other aspects of university life, such as reduced seminar participation due to fibro-fog or needing to leave the room without question. It can reduce and often eliminate the embarrassment many people with hidden disabilities face when asking for help. There’s an efficient system in place to apply for extensions and deferrals if necessary. With some disabilities, especially those of a fluctuating nature it can be difficult to stay on top of work, despite your best efforts at planning. The mitigation system is there to be used in circumstances like this and applying for extensions isn’t something to feel ashamed of.

“When I came to university, I was undiagnosed and struggling to manage a condition I didn’t know anything about.”

One aspect of university life I really struggled with was feeling like I’d lost my ability to socialise. This should not be the case. Every society has a responsibility to make their events accessible, and lots have their own disability officers on committee. Speaking as a society Disabilities Officer, if you’re curious to join a society or have a passion that you’re not exploring for fear of being unable to participate, reach out to the committee, they’ll be happy to help.

Ultimately, I think every person will have a different experience at university, but it shouldn’t be overshadowed by disability, because we are not defined by our disabilities. As Mark Twain said, “comparison is the death of joy”, and often it’s about perspective. Rather than viewing my conditions as limitations, I remember that I have my own goals and methods of dealing with things. It may take me longer to get there, but as long as I reach that point it doesn’t matter. Be kind to yourself, ask for help when you need it, set attainable goals, plan ahead, prioritise, keep it all in perspective.

Studying with an Invisible Disability

Hannah O’Dowd, final year BA English and Drama student.

Hannah O’Dowd is final year student based at the Streatham Campus, studying BA English and Drama. Hannah experienced a traumatic brain injury in 2017 and agreed to share some of her insights into being a student with an invisible disability.

When I began university I was excited to continue my studies having completed my IB. I had no experience of cognitive deficits until on my Study Abroad year, when I sustained a traumatic brain injury. My brain could no longer process things the way it used to, and I’ve had to learn how my brain now works.

Before my injury I used to take pride in my independence, confidence, and seemingly endless amounts of energy. These are things which were snatched from me. I now question everything I say and do. I am far more analytical and I question other people’s actions and words, when before I wouldn’t have. I used to try and fit in more things in a day than was ever going to be possible before my injury; now I can only consider trying to do a fraction of the things I used to do. It is very difficult to explain to people why I have to do the things the way I do, this is because my brain injury is an invisible disability.

“I used to try and fit in more things in a day than was ever going to be possible before my injury; now I can only consider trying to do a fraction of the things I used to do. It is very difficult to explain to people why I have to do the things the way I do, this is because my brain injury is an invisible disability.”

One symptom of a brain injury which affects me is decreased verbal fluency. I have word finding difficulties (particularly when I am fatigued). The time taken for me to get frustrated (with myself or others) has also dramatically decreased since the injury. ‘Dropping an issue’ or ‘moving on’/’forgetting about it’ is a response which cannot be done with ease for someone with a brain injury. It’s often embarrassing to experience an angry response to something which I then later reflect to be unfitting for the situation. I have so much self-doubt about the placement of my anger and as a result I often seek confirmation from others to check that my feeling is founded. I used to be a dramatic person, but I was never an ‘angry person’. It’s difficult, but this reaction is because my brain no longer has the ability to process the information fully and quickly; I might misread something and react, and others won’t understand why I have that reaction.

Harsh sounds and lights can be very distressing to someone with a brain injury. But simultaneously trying to read something in dim light will exaggerate fatigue as it works the brain harder. Managing this is difficult and is a challenge every day.

Another common result of a brain injury is for someone not to be able to recognise what is or isn’t socially appropriate. For me, I frequently have ‘no filter’. So the things you think but don’t say, someone with a brain injury might say it. My brain no longer compartmentalises information the way it used to. As a result, I might disclose information which is not obviously relevant to the conversation being had. This can put me (and anyone with a brain injury) in a very vulnerable position; it is something I must monitor as best I can. This filtration that I now must consciously do, is a contributory factor to my fatigue. My energy levels have depleted massively. This is another change which I unfortunately have to get used to. Not only does the brain injury mean that I am far more tired, it also means that I experience pain on a regular basis. I might look like the same person but because of this invisible injury everything is very different. Every brain injury is very different, but all symptoms are exaggerated by fatigue.

“I am very fortunate to have a graduate role lined up for when I finish my undergraduate degree… I am comfortable knowing Accenture have supported me in my return to work over my summer internship and am confident they will continue to do so after I have graduated.”

I am very fortunate to have a graduate role lined up for when I finish my undergraduate degree. Before my injury, I worked for Accenture during my gap year and was meant to undertake a summer internship with the company in the penultimate summer of my degree. Due to my injury, I was unable to undertake the internship in 2016, but the Accenture invited me back to take part in the scheme when I was recovered enough. They were fully aware of my traumatic brain injury; with this in mind they placed me with a client located most conveniently to minimise my fatigue and avoiding the need for me to have extra travel.

When I began my project, I informed my line manager of my brain injury. I did this so that if I struggled with certain scenarios (for example: divided attention exaggerated by fatigue) he would be able to understand why I might find some things more difficult than others. He was very professional and understanding. I also was given the option to work remotely if I needed to and the company has policies in place to ensure I was able to attend necessary medical appointments around my work timetable. Remote working is something the company was very supportive of, for many employees and for varying reasons. At the end of this 8 week internship I was pleased to have been offered a graduate position with the firm. I am comfortable knowing Accenture have supported me in my return to work over my summer internship and am confident they will continue to do so after I have graduated.

While I was in hospital I wrote a blog (initially as part of my speech therapy) and have written a few posts since being back at University. This was something I found to be a good outlet for what I was experiencing. It was a way of me coming to terms with what had happened, and a way of explaining the situation to others.

As I complete my degree I am also creating a show titled ‘Unknown’  about my time in hospital and living with my injuries. I will be taking this show to Edinburgh Fringe in August 2019. I hope it will help the audience to understand the difficulties faced by trauma survivors.

Adjusting to University: A Current Student’s Advice for New Students with ASC

 

Sophie Hodson is a second year Bsc Biochemistry student based at the Streatham Campus. We asked her to reflect on her first year, the ups and downs of starting at university, and to share some advice for new students with Autistic Spectrum Conditions.

“You already worked hard enough to get here, so there’s no doubt that you deserve to be here.”

 

Hello! Well done for getting into university – it’s no easy feat! I’ve just finished my first year and it was overall an amazing experience but undoubtedly difficult at times. You don’t need to worry too much; I found I learned pretty much everything I needed to know along the way. However it is helpful to be prepared and have a plan in place for when you start, so here’s my advice:

Being social

Firstly, everyone is as nervous as you are about making friends. Most people come to university not knowing anyone. You’ll meet so many people at the start of the year and most of the time you’ll have short conversations and not make lasting friendships (which is fine). You might not make great friends in Fresher’s Week so don’t feel pressured to do so – you might meet people you really like and connect with at society events or during your course.

The typical conversations at the start of the year go something like this:

What’s your name?    

Where are you from?

What are you studying?             

What halls are you in?

Speaking of Fresher’s Week, it’s not as amazing as I thought it would be. It’s not the end of the world if you don’t enjoy the first week!

Secondly, don’t feel pressured to drink alcohol if you don’t want to. I hardly drink at all and socials and society events should have a non-drinking option so don’t be put off going to socials for that reason (they’re really fun).

I’d recommend going for the first time to pubs /clubs with a second or third year student, or with a whole society just because they’ll probably know the atmosphere of the venues, like how noisy they get.

“You don’t need to worry too much; I found I learned pretty much everything I needed to know along the way.”

Studying

This is the reason why you’re at university, after all. I found that studying for a degree was very different from studying for A Levels – students here are generally a lot more relaxed about it (until the week before exams) and timetables are a lot less busy than at school. How (lectures, seminars, practical lab sessions) and what (textbooks, literature, lecture notes) you study depends on the degree you do – you’ll be told the specifics at the start of your course. Personally, here are the things I found hard about studying in my first year:

The part I probably found the most challenging was the reduced hours of contact between students and staff. Meaning I was used to walking into my teacher’s offices every day at college to ask for help with work, and I never failed to ask loads of questions in lessons. I was used to being able to talk to my teachers at college like friends.

Going from that to being talked to from the front of a very big lecture theatre, with hundreds of other students, by someone who didn’t know me by name just felt so impersonal and alien to me. Even my academic tutor (who did help me out a lot in the first term) was so busy with research and teaching other modules that I had to make an appointment one week in advance to talk to him for 15 minutes.

I also struggled with knowing what was expected of me, as in whether I was doing enough revision of lecture material, reading of textbooks or writing enough in my coursework. If I was stuck on something I’d email my lecturers or ask them quickly at the end of a lecture but it just wasn’t the same as before.

I’m still learning how to understand what’s expected of me, and I expect the second year won’t feel as much as a step up because I’ll know better how to handle things. Some things that I found helped this year are:

  • Talking to my academic tutor – he taught one of the modules I took in first term so he knew the lecture content inside out and could tell me exactly what I needed to revise
  • Talking to my mentors (from AccessAbility and Wellbeing) about what to revise and when
  • Trying to answer the intended learning outcomes for each section of the module – if I can answer those myself then I’ll know how to answer any exam question!

Getting to know how everything works and looking after yourself can be difficult, but just know that you won’t be the only one to feel that way. Talking to other people on my course helped me – it turned out that often they found the same assignments challenging and the same lecture content confusing as I did.

There are loads of people you can talk to, such as anyone from AccessAbility, if you ever get really stressed. But you already worked hard enough to get here, so there’s no doubt that you deserve to be here.

Other things that I can recommend are:

  • Quizlet! My mentor introduced me to it and no word of a lie it has changed my life, it’s a free app and website where you make flashcards. It helped me so much because I could make them about the lecture content and test myself on it rather than just passively reading it.
  • If you want somewhere to study that’s not your room I can’t recommend highly enough the Old Library because I’ve walked around the main library in the forum many a time trying to find seats when I should have gone straight to the Old Library!
  • Writing out your deadlines well in advance (like in the first few weeks of term) was really helpful for me because the deadlines didn’t creep up on me.

 Support

One of the most important things I did before starting university was arranging my disabled student’s allowance from Student Finance so that I was set up with 2 mentors almost as soon as teaching started. Mentoring sessions are directed by you so you decide what to talk about, I like to discuss timetabling and time management mostly.

I also found the mindfulness course run by the Wellbeing centre really helpful, it’s not that big of a commitment and it really helped me to not worry about the future so much by just focusing on right now.

Finally, don’t put too much pressure on yourself to study all the time because university is about more than studying. It took me a long while to find a balance between studying and doing other things like going to socials or meeting up with people, so don’t worry if it takes you a while to sort out a routine because it is a big change. Just remember that you’re not the only one in this situation and that it is hard, but if it isn’t hard it’s not worth doing, right?

Take care.