As part of I AM’s mission to celebrate autism with the wider world, we’re happy to announce the launch of I AM Profiles, which will feature 10 questions with…’ interviews with selected people about their experience of autism. In this first profile founder of Sensory Joy, former academic and autism activist Rose Matthews talks about her experience:
1. Although you weren’t formally diagnosed as having autism until you were 58, how has autism affected your life?
As a child, I had a lot of sensory sensitivities but I had no idea these were due to autism. I was also painfully shy, and by the time I went to university, I did not speak at all in lectures or seminars unless it was absolutely necessary. I was extremely homesick, and I think this had a lot to do with missing familiar and comforting routines at home.
I had regular periods of complete exhaustion from secondary school age onwards. It’s only now that I realise this was due to autistic burnout. This sometimes led to me resigning from a job and taking on a different role, but then the same thing would happen again. I now know that issues with auditory processing make certain situations extremely tiring for me.
2. What are the negative sides of autism and what are the positives?
The downside of being autistic is the stigma and misunderstanding that still abounds. There’s nothing about being autistic as such that I dislike. It’s just how I am, and part of every fibre of my being. I used to have meltdowns if I overdid things. Now I try to avoid them by making sure I don’t overstimulate myself with too much stress or excitement. Another downside is the lack of specialist counselling and mental health support for autistic people.
On the plus side, my heightened sensory sensitivity means I experience a lot of joy from things like nature, music and art. I feel emotions intensely too. Contrary to what a lot of people assume about autistic people I have had a fulfilling romantic life, I’ve had two children and several long relationships. I’m in a happy second marriage now.
3. How has autism affected and informed your employment and work?
The main impact of being autistic on employment was finding it difficult to remain in jobs for any length of time. I had the relevant knowledge and skills, but I found it hard to cope with office politics and things like health and safety being ignored. Open plan offices were a nightmare.
I had an uncanny knack for uncovering various forms of wrongdoing like misuse of credit cards, racist abuse and bullying. But if I tried to tackle these it generally rebounded. With hindsight, I can see that communication differences contributed to this. And I lacked the strong social connections many of my colleagues had, which might have protected me from becoming a target myself.
If I hadn’t been autistic (or if I’d known I was and been allowed reasonable adjustments) I might have had a less turbulent career. As it was I changed career direction many times, which was exciting but exhausting. I reinvented myself out of necessity, landing up in some jobs that suited me, which meant I achieved a lot at work between my mid-30s and my mid-50s.
I’ve been in and out of academia and social work during my career, but nearly everything I’ve done has been about learning, development or some other kind of transformation. In my mid-50s my partner became unwell so I stepped back into part-time work for a while so I could care for him.
After getting my autism diagnosis at the age of 58 I went back to working full-time for an autism charity. But the policy world was too far removed from practical issues for me. It’s hard to adopt an incremental approach when autistic children, adults and families have such an obvious and urgent need for support. Working in a role that conflicted with my values and commuting to London meant I soon became burnt out.
4. You are an academic. What did you study and why?
I studied English Language and Literature when I was 18. I didn’t see it leading onto a career, it was just a pleasant way of spending time. In those days we had student grants rather than huge debts, so we didn’t feel compelled to study vocational subjects.
In my 30s, when I had two young children, I returned to university and studied for a Diploma and Master’s degree in Social Work. I ended up teaching on the course I’d just graduated from, alongside being a mental health social worker. Eventually, I shifted into academic work full-time. My interest in social work relates to my passion for social justice, which is at the heart of everything I believe in.
5. Tell us about Sensory Joy and why we should all follow it?
Twitter is one of my main interests. @SensoryJoy is an account I set up to share positive words and images associated with sensory experiences. My other account @NortherlyRose is a mixture of autism-related content and random stuff. I’m trying to keep away from politics as it gets me too worked up!
6. What is the best thing about Durham?
The best thing about living in County Durham is the landscape. We have such beautiful countryside and beaches, but it’s not too busy, so it’s ideal for me. My daughter lives nearby with her partner, which is lovely too.
7. What inspires you?
Autistic celebrities like Greta Thunberg, Dara McAnulty, Anne Hergerty and Alan Gardner are inspirational role models, but I’m also inspired by autistic people who aren’t famous who I’ve met online or in real life. Every autistic person is inspirational to me in some way because of the challenges they are up against.
8. If you could lead your life by one motto, what would it be?
The motto I would choose to live my life by is “Make good trouble”, by which I mean don’t just accept the status quo if it is unjust or inadequate, fight for something better. There’s another quote one of my Twitter friends posted which I also really like: “Autistic tenacity is a hell of a thing”. That’s how I survived up until now!
9. Where do you see yourself in one year’s time?
I can’t predict where I’ll be in a year’s time but I hope to have found a way of making some positive, practical differences to how support is provided to autistic people and their families. I also hope to be seeing my parents, siblings, children and grandchild more often.
10. What three things make you smile and why?
Three things that make me smile are sunsets, seeing my family, and the changing seasons:
Sunsets can be so spectacular they make me want to gasp, point and jump up and down.
Seeing my family was something I used to take for granted, now it’s really rare and special.
The changing seasons remind me that time is slipping by, and there’s so much more I want to do.
If you or someone you know is interested in taking part in I AM Profiles, please drop us an email at firstname.lastname@example.org.