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Recently diagnosed - No idea who I am any more

Camille

Hey - new here and hoping to get some friendly advice on how to cope with being diagnosed recently. I’m 34 and i was 95% convinced I was autistic for about 4 years before I actually got officially diagnosed, so when I finally got the confirmation that all my suspicions were right, I felt a huge sense of relief and validation. Now, about a fortnight on, my euphoric relief has turned into a deep dark dissociative space. I’m depressive, vacant and don’t want to talk to anyone or do anything social. I am aware of how down I am, but can’t do anything about it. I feel like I’ve now been given the green light to know who I really am… and now I’m completely overwhelmed. I feel like I have to get to know a new person. And that person is me.. who I thought I already knew… help !

Parents

  • The ongoing emotional impact of a diagnosis is something that they don't warn you about at the diagnostic appointment, not in my experience anyway. Like you my initial reaction was euphoric relief. 

    What I wasn't expecting was the emotional rollercoaster it led to. The positive sense of relief subsided and I started to experience more negative emotions. A sense of anger at why it hadn't been identified sooner. A sense of loss at how my life could have been different if I'd known when I was younger. I started re-examining past events through my new found autistic lens.

    There is a useful article here, showing some common reactions to a diagnosis https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/

    The article explains that the 'depression' you are experiencing may actually be autistic burnout. You may have been masking and no longer have the energy or the inclination to do so.

    The trouble is that identifying what is masking and what isn't can be difficult. I found that I seemed to become more avoidant and anxious about talking to people post diagnosis, not less as I expected. I think this was because I started to become much more self aware and observing my own behaviour, to try and understand how I was masking.

    Many masking behaviours start in childhood and therefore become automatic and part of who you are. Trying to strip all that away can feel like what is left is just an empty shell. The sense of emptiness and not knowing who I am anymore came later for me. It seems that you've hit this stage quite early in your journey. 

    It will take time. I am talking years, not weeks or months. During that time it is important to accept whatever you are feeling as valid. Everyone has a unique post diagnostic discovery journey. You may experience some or all of the stages in no particular order. You may alternate between them. A diagnosis is a huge life change to process. Allow yourself the time and the space to adjust.

  • in reply to Autonomistic
    Autonomistic said:
    I started re-examining past events through my new found autistic lens.

    yes yes - 34 years to get through Disappointed relieved

    Autonomistic said:
    The article explains that the 'depression' you are experiencing may actually be autistic burnout. You may have been masking and no longer have the energy or the inclination to do so.

    Thank you so much for this article, I'm going to read it later as burnout is something I frequently experience, but the lack of energy for masking definitely sounds like what I'm also going through currently, post-diagnosis

    Autonomistic said:
     I found that I seemed to become more avoidant and anxious about talking to people post diagnosis, not less as I expected. I think this was because I started to become much more self aware and observing my own behaviour, to try and understand how I was masking.

    A hundred percent! I almost feel ashamed at my expectations of being able to talk to people with more confidence, whereas it's the exact opposite. Very interesting how others experience nearly exactly the same symptoms. I can't tell you how much I appreciate your response

Reply
  • in reply to Autonomistic
    Autonomistic said:
    I started re-examining past events through my new found autistic lens.

    yes yes - 34 years to get through Disappointed relieved

    Autonomistic said:
    The article explains that the 'depression' you are experiencing may actually be autistic burnout. You may have been masking and no longer have the energy or the inclination to do so.

    Thank you so much for this article, I'm going to read it later as burnout is something I frequently experience, but the lack of energy for masking definitely sounds like what I'm also going through currently, post-diagnosis

    Autonomistic said:
     I found that I seemed to become more avoidant and anxious about talking to people post diagnosis, not less as I expected. I think this was because I started to become much more self aware and observing my own behaviour, to try and understand how I was masking.

    A hundred percent! I almost feel ashamed at my expectations of being able to talk to people with more confidence, whereas it's the exact opposite. Very interesting how others experience nearly exactly the same symptoms. I can't tell you how much I appreciate your response

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