Two years in

So, it’s now 2 years since I learned that I am autistic. I didn’t anticipate writing about this anniversary until I realised how much things have changed since last year. My first reflection now seems so long ago and represents such a different place, psychologically, to where I am now. Not that things aren’t still difficult or confusing sometimes but the constant and relentless questioning, self doubt, confusion and all the other stuff that goes with processing a diagnosis has definitely calmed down. I’m sure that’s partly just the passage of time and getting used to this new information but I think it’s also because I got back in to work and had something to take my mind away from the total immersion in me and autism.

Initially, trying to learn a new job in a new environment with new people whilst processing my diagnosis 24/7 just made things even harder. Within a few weeks of starting the job I had a really rough week when I became profoundly aware that things felt just too hard and that I really, really didn’t want to be here anymore. I remember seeing a poster at work encouraging people to talk about suicide (I wasn’t suicidal, it is different) but knowing that if someone asked me how I was, I would say ‘fine’ – which is exactly what happened, several times – partly because that’s what’s expected in response to ‘how’re you?’ and partly because I didn’t know how to talk about it. I woke up with that feeling on a Wednesday and by Friday afternoon I could sense, almost physically, the weight lift. On reflection, I guess I was just overwhelmed and didn’t know how to recognise it or deal with it. There have been times I’ve felt like that since then but nothing as intense or prolonged and I think it happens when I just don’t know how to deal with things. Recognising that does, I suppose, make it easier to deal with as I know it will pass.

I’m still learning about me, still plenty of flashes of recognition when I read other autistic experiences, still moments when I realise that something I’d read or that a professional had said which at the time in my head got a ‘that’s not me’ response eventually led to a ‘oh, ok, that is me’ realisation. Realising that questioning whether my thoughts or actions are because that’s me or because I’m autistic is neither helpful or relevant. I am autistic therefore it’s both! I guess I’m more accepting of who I am and so no longer feel the need to constantly interrogate myself or research autism to figure myself out. Being aware of some of my quirks can be helpful in terms of my interaction with others, my mental health and of not being so hard on myself (which, as a perfectionist, doesn’t come easy!). Learning about executive function issues, autistic inertia and lots more has helped me understand myself better. I also recognise that I tend more towards shutdowns than meltdowns – if I go quiet, all is not well!

After I hit another low a few weeks ago I have come out the other side feeling a lot more positive than I’ve done since my diagnosis. It feels like their are flashes of ‘me’ coming back, that I am no longer so weighed down by feeling different, that I am beginning to realise the old me is still inside somewhere. During my post diagnosis counselling, hearing the Psychologist say, several times, “ you’re still you” made absolutely no sense at the time but now it’s beginning to.

I’ve also realised that I don’t find it easy to just accept things, that sometimes you need to question or challenge. Most of my life I’ve been involved in trying to raise awareness of the rights and needs of LGBTQI people, whether in my personal life, as a Union rep or as a manager – raising awareness, encouraging more positive experiences and outcomes for colleagues or clients. Now, LGBTQI issues are taking a backseat to autism! That same spark of indignation is there now at the thought of autistic people being treated badly, unfairly or disrespectfully. I’m still finding ways in which I can make a difference and I know that as I become more confident in who I am, I will be become a better advocate for autistic people. After an amazing event in Cardiff recently I was inspired and motivated by two of the speakers to come back and set up a Neurodiversity Network at my Health Board. It’s on the back burner for now as we focus on the pandemic but I’ve raised it with a couple of Assistant Directors that I know so that I, and they, hold me to account for it when things start to return to normal! That’s a massive shift from where I was a year ago.

So, for anyone who has recently discovered they are autistic and is overwhelmed trying to understand who they are, I can say that it does get better. You might not believe it right now, but it does. When I read that it can take years to process a diagnosis I assumed it would always be with the same intensity as at the beginning – but that’s not true. For one, that’s not sustainable! Also because things will settle, you eventually realise that you are OK, that you will become strong again and learn how to deal with the good and the not so good things in life. Sometimes things will feel like they’re going backwards again. There will be tons of stuff to figure out, a lot of it due to the ‘masking’ that we will all have done, without knowing or understanding it, and which leaves us not really knowing who we are because we’ve tried so hard to fit in with those around us. Eventually, understanding yourself better allows the possibility of being more forgiving of yourself for all the ways you thought you were different’ or ‘wrong’ – you’re neither of those things, you’re autistic, you’re you…..and you’re flipping amazing!

One thought on “Two years in

  1. Thank you for your thoughtful and compassionate reflections on your experience, Sooz. I am just over 2 years post-DX also, and recognise all of the thoughts and feelings that you mention. I still feel, also, that I am going through a process of ‘re-indexing’ my past – some conscious and some subconscious. I suspect that will continue indefinitely. Best Wishes, Stuart (@LittleTyrannies)

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