One Month On

I have how had my official autism diagnosis for a month. In that month, life has continued to change almost as rapidly as it did before I was diagnosed. My father’s cancer diagnosis has obviously changed my priorities with regard to how I spend my limited energy over the coming months. My financial situation has once more become difficult and precarious and is causing me considerable amounts of anxiety. And I have, with huge regret, realised that I cannot, at this time, continue with the maths degree that I so badly wanted to finish, so it is time to let go, to stop pushing, and to admit that I have simply run out of time and energy.

Obviously, life is still a long way from where I’d like it to be. My sleep patterns are still poor, which is not great, but they’re better than they were a few months ago. I’m now managing to leave the flat around twice a week, which is a slight improvement. When I do go out I am slightly better able to cope because I am more aware of which strategies work for me and I’m learning to give myself more recovery time afterwards.

I have now started, very slowly, to eat just a little better than I have been doing, which is no bad thing, since I saw a full-length photo of myself recently and was slightly shocked at how thin I looked. I finally weighed myself a couple of days ago and discovered that I’ve lost a stone since last summer, simply because I have felt too sick and anxious to cope with food. This is not good – I was not trying to lose weight, particularly not in that way, and I am just lucky that I was in good enough physical condition to start with that my body could cope. I am also still drinking too much alcohol in order to cope, but am starting to try to cut down just a bit in order not to do too much more damage to my physical health.

However, despite all the difficulties mentioned above, the persistent insomnia, the struggles to go out, and the continuing dysfunctional relationship with both food and alcohol, there are signs that things are improving. My husband and several friends have remarked that they perceive my underlying mental state to be improved and, even though I’m still getting some extremely sad, angry, and regretful moments, I’m starting to accept things as they are in a way that I didn’t before my formal diagnosis.

There were several people who said, before my diagnosis, that since I knew I was autistic, they knew I was autistic, and my friends and family accepted that I was autistic, there really wasn’t any necessity for me to pursue a formal diagnosis in order to understand myself. What none of these people understood, however, was my need for validation, reassurance that I hadn’t simply imagined the whole thing, and the huge huge confidence that the formal diagnosis has given me. This might not be necessary for everyone, but for me it was essential. And it really has made a massive difference to my life.

The formal diagnosis also, for me, marked the end of the old life, and the beginning of the new one. The process of discovery in the preceding months was like a sort of introduction, perhaps an overture before the curtain was raised at the beginning of the first act, or maybe the preface before the start of chapter one. My old life has been demolished, and now the process of rebuilding can begin.

There is obviously a lot of relief that the process of seeking a diagnosis is now over, and I feel, even more than previously, that my life now makes sense in a way that it never previously did. As I predicted in the last few paragraphs of Why Bother, the diagnosis has finally given me full permission to stop regarding myself as a naughty, lazy, failure of a human being. I also feel liberated from the pressure to “succeed” that has pervaded my whole life so far. There is still a long way to go and I still, frequently, feel that I am not entitled to breathe the air and that the world would be a better place without me, but I am still only a month into the new life, and there’s nearly half a century of the old one to analyse, reevaluate, and reframe.

Furthermore, I have to go through the process of mourning the life I might have had if only it had been recognised that I was autistic before I got to my mid 40s. There are still difficult topics to tackle – the mental health professionals who failed for two decades to recognise it, my childhood, the incessant, triggering, references to small children when I try to research autistic traits, and where I fit, if at all, into the autistic community (I am used to being alone and to shying away from being part of any sort of group, and discovering that there are others who experience so many of the same things as I do is, for me, somewhat disconcerting).

But one month after diagnosis there is a calm, even more so than that I felt after discovery. I strongly believe that there is a very good chance that my mental health will, eventually, be better than it has been for decades, possibly even than ever before. I am already, after just four weeks, much more confident about describing myself as autistic, and feeling that I have a right to do so. I’m also treating myself much more gently than I did previously – because now I have official permission!

I’m certain there will be yet more phases to go through, and not all will be easy, but maybe, just maybe, I will eventually rebuild a life that works. And it will be a better life than the one that officially ended four weeks ago.

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