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Just Diagnosed - not sure what I expected

ryuzappy

Hello,

I got my diagnosis approx 2 hours ago, after waiting for about 3 years on the referral list. I knew that there would probably be a lot to deal with emotionally, but most of the things I was told to expect were about feeling relieved, like everything suddenly made sense, etc. I guess there is some of that, but there's also this deep sadness and maybe even resentment.

For context, I'm 32. I first started experiencing depression in my early/mid teens, but wasn't in a supportive environment so it was entirely unaddressed until my early twenties. I first brought up curiosity about an autism diagnosis when I was perhaps 25 or so, but the doctor at the time told me not to pursue it because I 'don't want that kind of label'. I ended up on antidepressants for about five years which I stopped some time last year, but I'm currently kind of concerned about them having sort of fried my brain a bit (I don't know if I feel things like I used to). It doesn't really help that I carry a lot of internalised stigma that I'm trying to undo.

I know this is a support community so I'm not expecting any medical or psychological input, but I guess I'm hoping I'm not entirely alone with these 'resentful' feelings, or feeling like I wasted 15+ years when I could have had answers, or if the paths I took to solve a problem only made it worse because it was solving the wrong problem, especially with the whole 'if only someone had actually listened to me' sort of thoughts that are swirling right now. Did anyone else feel this way, and how did you get over it or deal with it? Is it common?

Sorry if this is a lot, and thank you for any input.

Thanks

  • in reply to Oscar

    Thank you for replying. It's reassuring that you feel you bounced back, even if it took a little while. I think 'empty' is a good description for how I feel right now, but with time hopefully that will change.

    I do like the Lego analogy. I suppose to expand on it, I've spent a long time wondering why my pieces don't fit together as easily as everyone else's and kept trying (unsuccessfully) to just bash them into place. Now it's fallen apart I can learn how the pieces actually fit together for me. I'll try to focus on that rather than despairing over the mess of pieces I have right now!

  • in reply to M&M001

    Thank you. Perhaps after some sleep things will look different - they usually do. I too haven't disclosed anything to family and don't plan to, but thankfully I have some friends and a partner who are understanding. Learning to give myself grace will be hard. I've always been incredibly self-critical. But now I suppose I can try to give myself a bit more understanding now I have evidence that there are contributing factors to the difficulties I experience. I'll check out some videos, too. Thanks again for taking the time to reply 

  • in reply to Roy

    Thank you for taking the time to respond. I think that sense of mourning is sort of what I feel at the moment. I know it will take time. It is good to know that I'm not necessarily alone in these feelings, which I've of course been told, but it's good to hear directly. I think that acceptance is good and certainly something I need to work towards. It was easy to joke about when it was only a 'maybe'. Now it's confirmed, it suddenly seems a lot harder to laugh about. Hopefully I'll be able to see some humour again when the initial adjustment is done.

  • Hi and welcome, I was diagnosed last year at the age of 57, I felt and often feel a sense of loss, all the ‘what if’s’’. Many of us are treated for depression, many autistic people do suffer from depression. I find it’s sometimes a feeling of total numbness. The processing of a diagnosis can send us down many “rabbit holes”. I find myself actually mourning the person I think I could have been, that child who struggled and learnt how to blend in unnoticed. I do get angry with myself for not realising I’m autistic and all the situations that could have gone better. I actually felt my life had been fake.

    I just take each day as it comes, I make often small adjustments that make life more manageable. I felt a bit of euphoria after the diagnosis, it soon disappeared. Don’t worry too much about other people concerning telling them, some will never get it. 
    I’ve arrived at the conclusion that I was born with autism, I didn’t ask, it’s not my fault and I will just try  to make the best of it. It was mentioned at my assessment that I had built my world around my needs, I work alone all day and that’s not being antisocial, it’s an environment that doesn’t overwhelm me.

    Things will get better.

  • Hey,

    I was diagnosed at 39 in April, I knew I had it since 2024. But after the diagnosis, I had the initial shock, then I felt good for a few weeks and things started to make sense and fall in place. I learnt why I did things. I’ve learnt my trigger points and now can control exposure. 

    It comes in stages, I’ve realised give yourself alone time, where you can unwind, be with your thoughts and recover from any environments which you find overwhelming. Give yourself grace, allowances and most of all be kinder to yourself. I still haven’t disclosed it to my family, and currently struggling with this. As I have managed 39 years without, when I needed them the most, I managed.

    It is common what you’re feeling, I watched some Youtube videos around post diagnosis, which gave me useful insights.

    Best wishes.

    M

  • Hello, welcome and congratulations on your diagnosis, 

    It seems the norm to be in a somewhat confused and emotional state straight after diagnosis. And 2hrs is pretty straight after!  It might be worth reading some of the many similar responses on this site at least for reassurance. 

    It certainly happened to me. At 70+ I initially felt rather sad and a bit empty at a lifetime of lost time and opportunities. There was a dash of anger but not much.  However, that was 6 months ago and I did bounce back but as a different sort of person. A lot of my worry went and I was much happier and more contented than I have ever been before. 

    Today, my best way of describing this post-assessment feeling is:

    Like having lived with just 1 toy, say a horse, made of numerous Lego pieces. Then one day (your assessment day) it falls apart and  naturally you become a bit confused, angry and lost. Then slowly you realise that you can make numerous different things from your Lego and for ever.  And your world has changed. 

    Best wishes,
    Oscar