Rose's story
#NowIKnow – Rose’s story...
Discovering that I was autistic at the age of 58 didn’t just change my life - it saved it. Things had got to the point where I knew the same pattern would just keep on repeating itself unless I managed to work out what was happening and why. The difficulties I experienced were a complete mystery. I was anxious and unhappy but not in typical ways. I’d been a mental health social worker so I knew a bit about this.
"In my fifties my life had started to unravel and there seemed to be no way of stopping it. Employment, relationships, survival - everything depended on me finding out what on earth was going on."
In my fifties my life had started to unravel and there seemed to be no way of stopping it. Employment, relationships, survival - everything depended on me finding out what on earth was going on. A chance message from a former colleague telling me about her autism diagnosis was the catalyst I needed. Through the National Autistic Society I then joined an online community of autistic people who supported me through the autism assessment process myself. The assessment was quite tough at times. Re-examining so much of a life already lived can be emotional. It has been the validation of my autistic kin, as much as the formal diagnosis, that has allowed me to embrace my autistic identity and to believe that in spite of being unrecognised for nearly 60 years I am authentically, indisputably and proudly #ActuallyAutistic.
Sharing more stories about autistic lives will help as yet unrecognised people to discover themselves. No one ever suggested I might be autistic until I worked it out for myself. Everything in my life has improved since this discovery. It has been a gradual process which sometimes felt like one step forward and two steps back, but I’m at peace with myself now, and no longer fearful about the future.
Growing up not knowing I was autistic meant I tried hard to do things that came naturally to other people, like smiling. I practised that in a mirror. And things that came naturally to me like memorising facts, seemed more difficult for other people. My openness meant I saw no shame in telling my mum’s friend I’d started my first period. The shock on her face told me I wasn’t supposed to share that kind of information. There are campaigns now to make people comfortable talking about periods. I was ahead of my time.
I’ve always been a loner. It wasn’t just that I had difficulty making friends it was that I didn’t need them, not in the plural. One special person and close family was enough. I’m interested in other people and I enjoy casual social contact, but I don’t have the motivation or capacity for a big friendship group. This meant I wasn’t part of the gossip circuit that would have warned me about a sexual predator at work. And as an outlier, not one of the group, I was a target for bullies.
"Being autistic gave me a huge amount of joy through heightened sensory sensitivity. Applying myself to things single-mindedly led to academic and career success. But not knowing that I was autistic until my late fifties was a huge disadvantage."
Being autistic gave me a huge amount of joy through heightened sensory sensitivity. Applying myself to things single-mindedly led to academic and career success. But not knowing that I was autistic until my late fifties was a huge disadvantage. I took more responsibility for difficulties I encountered than I should have. As the pattern repeated I lost confidence in myself.
I wouldn’t change the fact that I’m autistic but I would have liked to know sooner. A lot of unnecessary suffering could have been prevented that way. Not just for me, but for other people. It’s hard not to regret some of the things that happened, even though I’m perfectly content to be me.
Women are already significantly disadvantaged in many aspects of our daily lives - there’s a gender pay gap, we take on a disproportionate amount of housework and childcare, we’re judged for what we wear and how we behave in ways that most men aren’t. Access to healthcare and health outcomes are often worse. Our pension provision lags behind men, we are more likely to end up living in poverty. In the course of my lifetime I’ve seen things progress then slip back in terms of gender equality. I am less confident now than I was 20 years ago that structural inequalities are going to be addressed. Being autistic also means facing significant disadvantages relating to education, employment, access to healthcare and health outcomes. For autistic women (which includes trans women) and non binary people, discrimination and disadvantage are multiplied, for people of colour the barriers and negative consequences are even greater.
"Not being represented means not being seen. We have to break this vicious circle of denial and discrimination by putting our female and non binary selves centre stage."
In the popular imagination autism is still synonymous with being white, male, and relatively young. Those of us who are a long way from fitting that stereotype often struggle to recognise ourselves, and to be seen. Not being seen means not being represented. Not being represented means not being seen. We have to break this vicious circle of denial and discrimination by putting our female and non binary selves centre stage.
No one is going to stand aside and make room for us, we have to claim the space for ourselves. So much depends upon this. Suicidality is far more common in autistic women than most people realise. Not having a diagnosis doesn’t make this problem go away. And we’re quite likely to be given alternative inaccurate diagnoses which end up making things far, far worse. This campaign won’t just change autistic women’s lives - it will actually save them.