diagnosis

more or less 2 months since my late diagnosis.  is it wrong to wonder why i bothered, yes now i have a formal diagnosis but  has it has changed much.  im still struggling to manage, still not getting the support i need and still feeling like im on the wrong planet.  i dont know what i expected if anything but i guess i was hoping things would feel easier.  knowing im autistic doesnt change the world around me and how i struggle with it and its making me feel low.   anyone else felt the same after late diagnosis

Parents
  • I would not have believed it without a diagnosis. So any change was going to be impossible without that. I needed to know I had not failed for no reason.

    I needed to know if/why I was burnt out and if/why I was susceptible. Why my life felt like 56 years of endurance waiting for it to start. Why my life is the way it is.

    When I realised, then had it confirmed, I had an overwhelming, crushing sense of loss. I wasn't sure I would survive it, I won't say more. I ended up sitting in the church asking god for guidance. No matter how hard I tried I was not going to be NT. I was comparing myself to the wrong thing, and I had set the bar so high no one could reach it anyway.

    There are multiple overlapping issues for me, autism made me susceptible to other things. I have spoken to 2 counsellors and 2 psychologists, to confirm a few things. But mostly I have analysed myself in as much detail as I can. It is hard when you don't know what you are looking for. But Like peeling an onion, layer by layer, to see what depends on what, how I really think, what modes I have, what causes stress and how it affects me, what issues I have, where they came from, what is different from NT. It has helped with the trauma, the burnout is largely gone, I am calmer, I can think better, I am still fragile.

    It has taken a year so far. I think it will take more, but I am basically done, it is just a question of improving my life now as best I can. The mistakes of the past cannot be undone, and the knowledge at the time would not have helped much, indeed might have made things worse.

    I could not have arrived where I am by another path, but it is not a path I wanted. Things slipped through my fingers. From the outside it looks like I have done ok, but it was a mask, it cost a lot and I don't have much to show for it. It could have been worse though, but much feels hollow and I barely remember big chunks.

    I have found I am almost a text book example of a couple of things.  I have struggled at the 'right' times, but I was hyper independent and kept going with costly adaptations, rather than fail and get help.

    Has finding out been good? I couldn't continue as I was, but finding out was equally hard. Will the future be more sustainable and bring more peace and calmness, I hope so. But it is a work in progress and the only person that can change me is me, as long as I can figure out what to change.

    Is this a good or bad story. I don't know. Your experience depends on your background. The point is it takes time and you need to be gentle with yourself.

Reply
  • I would not have believed it without a diagnosis. So any change was going to be impossible without that. I needed to know I had not failed for no reason.

    I needed to know if/why I was burnt out and if/why I was susceptible. Why my life felt like 56 years of endurance waiting for it to start. Why my life is the way it is.

    When I realised, then had it confirmed, I had an overwhelming, crushing sense of loss. I wasn't sure I would survive it, I won't say more. I ended up sitting in the church asking god for guidance. No matter how hard I tried I was not going to be NT. I was comparing myself to the wrong thing, and I had set the bar so high no one could reach it anyway.

    There are multiple overlapping issues for me, autism made me susceptible to other things. I have spoken to 2 counsellors and 2 psychologists, to confirm a few things. But mostly I have analysed myself in as much detail as I can. It is hard when you don't know what you are looking for. But Like peeling an onion, layer by layer, to see what depends on what, how I really think, what modes I have, what causes stress and how it affects me, what issues I have, where they came from, what is different from NT. It has helped with the trauma, the burnout is largely gone, I am calmer, I can think better, I am still fragile.

    It has taken a year so far. I think it will take more, but I am basically done, it is just a question of improving my life now as best I can. The mistakes of the past cannot be undone, and the knowledge at the time would not have helped much, indeed might have made things worse.

    I could not have arrived where I am by another path, but it is not a path I wanted. Things slipped through my fingers. From the outside it looks like I have done ok, but it was a mask, it cost a lot and I don't have much to show for it. It could have been worse though, but much feels hollow and I barely remember big chunks.

    I have found I am almost a text book example of a couple of things.  I have struggled at the 'right' times, but I was hyper independent and kept going with costly adaptations, rather than fail and get help.

    Has finding out been good? I couldn't continue as I was, but finding out was equally hard. Will the future be more sustainable and bring more peace and calmness, I hope so. But it is a work in progress and the only person that can change me is me, as long as I can figure out what to change.

    Is this a good or bad story. I don't know. Your experience depends on your background. The point is it takes time and you need to be gentle with yourself.

Children
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