Daisy Mitchell interviews Rosemary Matthews, St John’s alumna and staff, exploring her experience at John’s and how her life has changed after her autism diagnosis at the age of 58.
What did you study and how did you end up at John’s?
I studied English Language and Literature graduating in 1981. I wanted to be in the centre of Durham because I get lost very easily, I wanted to live in college for all three years and I wanted a mixed gender college. Those were my criteria when deciding. St John’s, even back then, had a reputation of being a very friendly college – sometimes too friendly! (I once found people praying outside my room) – so it seemed like the perfect place for me.
I also don’t think I would have completed my degree if I had been at any other college. The kindness of the housekeeping and maintenance staff and the warm, friendly atmosphere got me through my degree. Even things that were particularly challenging for me, like sharing a room in the first year, turned out to have a silver lining. One thing that has especially stayed with me is the cooked breakfast in the mornings. I think this is one of the things responsible for my good grades! The house keeping staff were also really lovely so it was just a lovely atmosphere.
I had a mixed experience, however. I did very well academically (awarded a first), but seminars were agonising because I was extremely self conscious and painfully shy. 40 years on, at the age of 58, I discovered I was Autistic.
That’s crazy! But before we delve into your diagnosis can I ask more about your experience at John’s? How did you find sharing a room?
I had a very traumatic start to sharing a room. I had to get the train up to Durham with a huge green trunk – it was the most enormous thing you’ve ever seen. The Student’s Union met us at the train station and they had mini buses but we got separated from our luggage. So the first thing that happened was I arrived at college and my luggage didn’t – it was very delayed. I can’t remember if I knew I was sharing a room before I got there or found out when I arrived but I was sharing with a totally lovely person who was a mathematician, however, we had completely different body clocks. I would generally stay up really late and not get up super early and she was lights out at 10 get up at 6am – we were like chalk and cheese! I also found lack of privacy very problematic, now I know I am autistic this is obvious. Luckily, she had more scheduled lectures than I did so she was out quite a lot but the unpredictability of it was difficult. However, I think I would have been worse off in a single room because I might’ve found it hard to come out and meet people. My roommate and I actually studied together in third year. We would meet in the library, study for a couple of hours on adjacent desks and then go for a walk together – it was like a study buddy situation which was really nice.
40 years on, at the age of 58, I discovered I was Autistic.
Rosemary Matthews
Sounds like the struggles were worth it in the end! So you graduated in 1981, what have you done since then?
It might be quicker to say what I haven’t done! I’ve had a diverse career – book seller, police officer, social worker, academic, learning and development specialist, NHS Manager, research funding manager, library assistant, freelance artist, tea towel designer, employability adviser – so many things.
I was sponsored to do a masters at University of East Anglia by the Home Office in Social Work specialising in criminal justice, mental health, and learning disabilities and after this I started my PhD. I studied part time because I had to look after my children but as I started a colleague of mine got a big research grant and I was invited to take up some of their teaching so I became a part time lecturer alongside my studies. This was quite a difficult transition because I had only recently graduated so to immediately join as staff was odd for me and many of the lecturers who had worked incredibly hard to be where they were. I had 2 children at this time and it became very difficult having jobs in different places so I gave up the PhD and joined the Open University, writing a new course and creating audio and films for them – this was such a fun experience. However, I wanted to get a mortgage so that my children had a firm foundation so I went to work for a local authority commissioning mental health training for staff. I got a permanent contract there and bought a little house down south.
My time as a police officer has helped me massively as a person. However, due to the time at which I was working as an officer, I was one woman amongst a large group of men so was often subjected to sexist comments from colleagues. There were also situations where they used my gender as an advantage and would send me in, as the only woman, to calm down a situation before everyone else entered. For example, a pub fight would be aggravated by 4 male police officers coming in so they would send me instead. So overall, I have done a lot since leaving Durham as a graduate!
Having done so many things, how did you end up back in Durham?
Partly wanting to escape from Essex. I was working at the University of Essex in a brilliant role that was tailor-made for me but there was an unfortunate incident with a senior colleague of mine who had very prejudiced views. I knew at that point that I had to leave so when I saw a job advertised in Durham I went for it! I always wanted to come back because I love the north east so much. I actually used to bring every person I dated to Durham to see if they loved it as much as I do!!
Sadly the job I was doing in Durham was not what I thought it would be so I had to find something different. I drew a radius around where we were living and found out that there was a social work course being taught nearby and got a job as a lecturer and placement coordinator. After my two years placement was up my husband and I went back to the south. Soon after moving I had to give up full time work to care for my husband in his illness and we decided at that point that we had to start doing everything we had always said we would before it was too late. So we sold our house, gave up our jobs, and chanced that we would find some work up here in Durham. The community library service was advertising jobs and I, very luckily, got a job there. In 2018 I discovered that I was autistic, which led to a whole career renaissance as an autism researcher.
In 2018 I discovered that I was autistic, which led to a whole career renaissance as an autism researcher.
So what are you doing now?
So now, I combine library work, here in John’s and in the community libraries, with working on various research studies which is great! Since my autism diagnosis I’ve become very involved in neurodivergence advocacy, activism and research work. I’ve also been doing a participatory research project at the Centre for Neurodiversity and Development, which is part of Durham University.
I’m also a research associate on an international study of autistic people’s experiences of menopause. I have collaborated on research into autistic people’s support needs relating to relationships and sexuality, and their experiences of the transition from working life to retirement.
That sounds amazing! I wanted to ask more about your autism diagnosis if that’s okay? How has it changed your life and what led to the diagnosis?
My life has changed exponentially! An autism diagnosis isn’t like being diagnosed with a medical condition. Discovering I was Autistic threw everything I thought I knew into doubt. I had a bit of an existential crisis to be honest. I revisited past events that had always confused me, and they suddenly made sense. There is virtually no support available for autistic adults post diagnosis, and very little indeed for children and families so I found kinship and community with other neurodivergent people through social media and online support groups. That has been the greatest help of all.
When I had my autism assessment it was clear that I had signs since I was born. In the menopause when hormones fluctuate, I realised it was more turbulent than it should have been. I started having meltdowns in the menopause that frightened both me and my husband. We knew something was wrong and were worried – I actually got arrested after my husband spoke to someone about my behaviour! I was taken to the police station and kept in the cells overnight because they thought I was guilty of domestic abuse, but I wasn’t, I was just out of control. My experience as a police officer made this situation easier as I had been on the other side of it before. When I came straight out of the police station I went to my GP, knowing there was something that needed attention. She told me that I had to sit it out and wait to get over the menopause which is such silly advice! So, I tried to diagnose myself with my knowledge of mental health. I eliminated a number of things that I didn’t think it was before going to a specialist but they could only see that I was coping. So, I went to a psychologist and had the full test. The conclusion was that I was most definitely autistic. I was given lots of advice about sensory overload, how to avoid having meltdowns, and what autism is and isn’t, because there are lots of myths about it.
This job here at John’s is perfect for me, but it is very difficult to find jobs that are suitable for neurodivergent people. Even working full-time was always challenging for me. I was also extremely lucky that my career went the way it did because there was nothing in place then. For a start, I wasn’t recognized as a student with additional support needs, but even if I had been, there wasn’t specialist career input or infrastructure to support me which is essential for neurodivergent people.
I think representation is so important and the ability to be open.
Looking back now, what support would you have liked to receive when you were at college, if any?
I struggled when I graduated and had to find a job. I didn’t attend any of the big university careers events, smaller college based career conversations would have suited me better. Recently I ran some pop up career cafes and relaxed informal chats with alumni in diverse job roles over coffee and cake – just the kind of event I would have enjoyed!
I think representation is so important and the ability to be open. The unpredictability of situations can also be difficult, so, for example, if you’re doing an event, have more information upfront about what is going to happen, what to expect, and what things are going to look like so that people feel more comfortable and less uncertain when attending. Something that is also important is the double empathy problem. Autistic people are often trained to learn non-autistic behaviours and ways which can be a real shame. It is so much easier and more important to relax and be yourself and be honest about your neurodivergence.
What advice would you give, then, to neurodivergent students at John’s both current and future?
The sensory environment is a massive issue for many autistic people. After spending time in a busy noisy environment I have to recover by sitting in silence in a dark room. It’s always worth everyone considering how work and social events can be adapted to make them more inclusive. I am extremely fortunate to work in the library which meets my sensory needs perfectly. The absence of noise and the aesthetics of the architecture are joyful! It’s lovely interacting with students and staff too. The library is a fantastic environment for neurodivergent students. For me, it was a sanctuary where I could find peace and calm so it is a great facility. I remember having a moral tutor. The idea was that if you were struggling with something that was not academic but more personal, you could go and see them. I did that a few times and it really helped me. Being away from home, away from parents and siblings made me feel terribly homesick. There used to be a little payphone in Cranmer that I used to feed 10p and 2p coins into until it would be full and wouldn’t take any more money! I used to cry down the phone to my poor mother, then I’d feel a bit better and go to the bar.
Something that is also important is the double empathy problem. Autistic people are often trained to learn non-autistic behaviours and ways which can be a real shame. It is so much easier and more important to relax and be yourself and be honest about your neurodivergence. There is nothing better than to allow an autistic person to just be who they are.
It is so much easier and more important to relax and be yourself and be honest about your neurodivergence. There is nothing better than to allow an autistic person to just be who they are.
Thank you so much for speaking to me Rose, it has been amazing to hear about everything you’ve experienced. Do you have any final words of wisdom?
What I hope for, in the next few decades for future neurodivergent generations, is that there is earlier recognition, this doesn’t necessarily mean medical diagnoses because self identification is fine, and that there are built in accommodations. There are a lot of adaptations that benefit everybody, not just neurodivergent people. The more that is designed in, the better. I just hope for an increased acceptance and awareness.
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