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Feeling lost after diagnosis

sidenote

I recently received my diagnosis of ASD level 1 and ever since I feel quite lost. I was pretty sure I would be diagnosed so it isn’t a big shock but ever since I am really struggling to process it all. 

I think the biggest thing is I’m not sure who I am anymore my sense of self seems really off. Is this normal, did other people feel like this and if you did what did you do to start feeling more yourself again. Where there things you did that really helped?

  • in reply to sidenote

    Hi Sidenote. Agree with the others on this one. 
    3 years on and I’m still trying to understand who “I” am. I realised that I’ve been trying to fit in for so long that all I’ve done is be what others want / how I “think” I should be…. So yes the part about who you really are defo resonates with me. It might take time / it might not… hopefully you’ll take some time out to think about what makes you feel good inside and embrace it. Be selfish for once and just bring something into your life that’s for you - and build on that. Good luck Hugging

  • Thanks both for this. It’s nice to know this is not a unique experience I thought I would be so pleased to have something confirmed but yes I think I need to allow the time for me to process everything

  • Yes I think this is many people's experience. I felt really low after my diagnosis which was a surprise. I think it's a big life change somehow, and your body and mind take a while to adjust. Be kind with yourself and give yourself permission to feel weird for a bit. 

  • When I found out, it made a lot of sense, but it really crushed me too. I felt helpless because I knew it was going to be lifelong. It amplified my already ongoing issues and for a while I completely gave up on life.

    What helped me in no particular order was reaching out (forums, community support groups etc), exposure therapy and establishing and maintaining a good routine. With the exposure therapy, I essentially just forced myself into situations that would normally make me feel uneasy, but knowing I had the option to walk away at any point made it less daunting. In terms of my routine, it's just things like waking/sleeping at the same time daily, good exercise habits and giving myself time and space to indulge my hobbies. 

    I completely understand how hard it is at first. It takes a lot of patience and time to adjust, even if you knew prior that you would be diagnosed. Having it confirmed really hits home. 

    You'll get there. Be kind to yourself! 

  • Hi there sidenote, and thanks for posting.  You are definitely not alone in feeling this way - receiving a diagnosis, even when you already highly suspected you were autistic, can be a huge thing to process and deal with.

    I'd like to point you towards our NAS guidance page titled How will I feel after receiving an autism diagnosis? which address this very phenomenon, including common emotional reactions and how to reflect on your experiences and identity following your diagnosis.

    I hope you find this helpful, and that you find our community a welcoming and supportive space.  Best wishes to you!