Autism diagnosis: a slow, lonely crossing through the mind

Often, it’s not until a journey is over and you’re looking back at the wild sea you’ve been crossing that you realise what storms you’ve been through. 

This last 15 months has made me tired and withdrawn. I’ve had to deal with a different version of myself and life events through an autism diagnosis, and alone in my head I’ve had to take on a past loaded with things I’d hidden away for my own safety. There were lots of memories I was very reluctant to have visit me and I was cross with the past for hurting me. 

I was also (and still am) cross with and insulted by textbook language about autism and autistic people. It’s more than a little painful to hear that you’re thought of as broken, disordered, imperfect, and that something “went wrong” when you were forming from a bundle of cells years ago. Incapable of this, bad at that, struggle with whatever, can’t feel, can’t understand. Lots of subjective thinking based on non-austistics’ limited analysis. I didn’t fit it and I was confused. And yet I do and feel things I’m being accused of being unable to do! I even took on a few new traits for a while because I was so consumed by the dominant terminology and assumptions. No wonder people shy away from diagnosis and would rather convince themselves they are neuro-typical! 

It was only when I found writings by intelligent, independent, adult women from inside an autistic perspective that I found something I could relate to. No one was trying to tell me what I was and what I wasn’t anymore, and, importantly, no one was trying to undermine me with suggestions of not fitting. We weren’t lacking – this was something to be proud of! 

Dealing with things is important; it can stop you going crazy and eases the strain on your health – and it’s only fair on others to try to untangle complicated things which might be a strain on relationships – but the process is unsettling and often fraught with invisible mental battles and old wounds to be reopened and examined. It’s painful going through things alone that no one else can see. 

Like grief, it’s all about getting through, plodding on, and fighting the tide of everyday life on top of the swell of emotions, loss and sadness. Life has changed, the picture of me in my world has changed – just as it did when our father died. 

Of course, unlike bereavement, it hasn’t been all about sadness, but it has involved a lot of looking back and visiting painful memories. And there is a sense that something has gone. And from what I can gather about autism in me and others it seems the condition causes memories to linger excessively and makes “moving on” more difficult. 

I feel as if I have been swinging  monumentally between a fairly normal, average outward life of a wife and mother with grown-up responsibilities and the usual challenges of juggling finances and practicalities and the hidden world of my chasms of internal wranglings filled with such an emotional cacophony that there’s been little energy for anything else. It’s like a rocky landscape that appears all one from a distance but close up it is craggy and there are inaccessible hidden depths. 

It’s not been all about thoughts and memories; much of what I have been through has been about feeling stunned, wrecked and exhausted. There’s been a greater need than ever for quiet, space and escape. I crave a sensation of emptiness or perhaps a single focus instead of this jumble.

I often think I should have been offered counselling to help me talk my way through this but, on the other hand, I know that one more person to deal with may have been too much for me during this process. People’s words, faces and actions fill my head long after their company – they become yet another thing to process. 

So I’ve done this alone and I have felt incredibly isolated. 

It’s lonely, it’s lonely, it’s lonely; no one knows, no one can help me, no one understands.

But I feel that this more recent sense of looking back over the last year or so means that maybe I’m coming through it now, and maybe the lone path was the right way to go. 

At least I took it. At least I went. And like finding sea legs, I think I’ve found my autism legs. I often wish I hadn’t gone, I often wonder if it was worth it. But I can say now, 15 months on, that on the whole it hasn’t made life any worse (some things are worse, some things are better. The bad stuff is mainly to do with other people’s hurtful ideas about autism) so it wasn’t a bad thing to do. 

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