Living with autism: the first year

I started writing this blog when I was going through one of the first difficult periods post-diagnosis. I was really struggling to accept my diagnosis. I genuinely thought, at the time, that someone was going to turn around to me and say there’s been a mistake. I didn’t know – and still don’t – whether that would be a good or bad thing. As time has gone on, and particularly since I’ve met more people who share this condition, it’s clear that that isn’t going to happen. And I’ve now (just about) accepted that.

Getting a diagnosis, a label, has been hard to come to terms with. It has made me question everything I thought I knew. But I think I’ve come out the other side with a better understanding of myself and my needs as an individual.

For me, the process of accepting and coming to terms with my diagnosis has almost been like some kind of grieving process, although I didn’t go through all the ‘classic’ stages.

Shock – I didn’t really go through this stage. Although the suggestion was unexpected, as soon as I started reading more, I could see that the label potentially fitted. So it wasn’t much of a shock to then have it confirmed.

Denial – This was a fairly short-lived stage on its own, but the feeling kept coming back for several months. The written diagnosis took a while to come through, and I didn’t feel able to fully believe that I really had the diagnosis until I had something in writing. Even when it came through, I found the wording slightly ambiguous and was worried that someone would at some point turn round and say that they’d made a mistake. It probably took about six months to be able to ‘relax’ and be more confident in claiming the label for myself.

Anger – This is a stage I only went through in hindsight. I didn’t really feel angry at all at the time, but looking back on the last year it’s obvious to me that this was happening from about three months from October to December. I’d been fighting everything and not really getting anywhere. So in hindsight, it’s pretty obvious that I was going through an anger stage. And this still bubbles up on occasion. I still go through stages of thinking that it’s not fair that I have to deal with this, and still get flashes of anger that this was ever suggested as an option.

Bargaining – I didn’t go through this stage at all. It never really seemed like an option.

Depression – Like anger, this is something I didn’t realise that I was going through at the time. In hindsight, this hit shortly after the report from a somewhat disastrous workplace assessment. (The assessment didn’t cause the depression, but was the catalyst for making me realise and reassess a few things.) This stage lasted about six months and I’m still not sure that I’m out of the stage completely.

Testing – For me, this hasn’t been a standalone stage. It’s been more of a continuing theme throughout the last year, that I’ve been almost testing different identities, different ways of being now this label has been given to me. And it’s taken about a year – and lots and lots of testing – for me to be confident that I now have the right ‘fit’ for me.

Acceptance – Somewhere I didn’t think I’d ever get to at my darkest point! But a year later, here I am. But I had to go through the other stages first. I needed to grieve and mourn for the life I thought I had. I needed to test out what felt right for the person I’ve had to learn to become.

But as I’m writing this today – exactly a year after my diagnosis – I feel fully confident in my own identity for possibly the first time in my life. It’s something that I think would be difficult to understand unless someone has been through something similar. I’d spent most of my life believing that there was something different about me, but through social conditioning had learnt to hide the differences relatively well. However, by hiding the differences I’d also had to hide parts of my ‘core’ personality. I’d cultivated the perception of always being the quiet one in the corner – when, actually, I’m naturally quite gregarious. (Still in the corner, though – it’s where I feel safe!) But, when I was still trying to hide my differences, it didn’t feel safe to talk unless I was very sure of the person I was with. Now, any differences can be explained away, so I’m able to relax more about being who I actually am as a person. Which is a good feeling. And it’s a place I don’t think I would have been able to get to without the diagnosis.

I suppose the original purpose of this blog has pretty much been fulfilled. I started it as an online diary to try to come to terms with the diagnosis and what it means for me in practical terms. But I’m not ready to stop writing yet, so I suspect the blog itself will start to change its focus somewhat: to be more about the day to day issues, misunderstandings and idiosyncrasies of life on the autism spectrum.

So, one year down. Hopefully many more to go 🙂 

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