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Getting to know yourself again

Touiise

Hello, 

I was recently diagnosed with autism and whilst everyone has asked if it’s been such a relief. I feel guilty and sad that there’s a part of me which feels no relief but regret for finding out. 
it was suggested to me by my psychologist and come really out of the blue. I feel like I’m grieving for a life and brain that I was working so hard for in treatmemt for a big majority of my life that was never really attainable as that actually isn’t how my brain is even programmed. 

I was just wondering if anyone else felt this? I feel more disconnected from people than I did before and almost a level of resentment of why can’t things just be that simple for me. 

I don’t know how to voice this as again everyone keeps saying what a relief I must be feeling. It’s like they gave me a diagnosed and instead of clicking together, everything feels more jumbled up. 

Thank you 

  • Congratulations on your diagnosis and welcome to the community!

    Following diagnosis, it can be common for us to experience a lot of emotional dysregulation.

    Although this can (but doesn't always) include feeling relief about having an explanation for our difficulties, it can also include working through a phase where we experience changing mixes of anger, frustration, grieving, confusion, uncertainty, so-called "imposter syndrome", and more. So please don't worry - it's normal to feel these kinds of things! 

    As for many others, my diagnosis turned out to be the start of a new journey, rather than providing solutions for my difficulties.

    The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

    NAS - How you might feel after a diagnosis - includes perspectives from other autistics

    NAS - Other advice covering post-diagnosis including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    Therapy (or counselling) is often recommended after a diagnosis, as a follow up action for your GP to arrange. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS.

    Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

    The Autistic Survival Guide to Therapy

    Finally, I'll just mention a couple of books that I and others have found helpful early on in our post-diagnosis journeys:

    Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

    How to Be Autistic (free download currently available via this page)

  • Hiya Touiise. I can only speak from my recent diagnosis but I certainly dont feel relief. I know its early so im mindful of that but when you have struggled for decades, then you know you are likely to struggle in a different way for decades more it feel to me quite overwhelming. People keep saying 'oh you can get a decent career now' which I know is unhelpful but as if I/we didn't have enough pressure just getting through the day to day as it is. I think I have temporarily disassociated in order to protect myself. I am trying to focus on my strengths opposed to my challenges but its not easy. Talking to people who get it in some way has been helpful on reframing my perspective. My family (I feel) may aswel say they prefer the undiagnosed version, as they dont have to change. You can pick your friends im hopeful to find new ND ones. People on here are helpful and welcoming. Welcome!

  • Hi and welcome to the community.

    I'm not formally diagnosed but when I discovered that I was on the spectrum I didn't feel relief either - I felt confusion as to how I didn't realise I was different to others, and a bit unsure of who I really was. That was about 9 years ago and I'm comfortable with myself now, so give it time. Take care.