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Newly diagnosed 29 y/o woman, struggling to accept

Rayleigh

Hi everyone, I’m new here and hoping for some guidance.

I was diagnosed with autism on Tuesday through the Right to Choose pathway with Clinical Partners. The assessments themselves felt thorough, but the actual diagnosis was delivered in a very blunt five‑minute phone call. I asked a few follow‑up questions but the responses were short, and I was told my report will take 2–4 weeks to reach my GP. It’s left me feeling like I’ve been handed this huge piece of news with no support or direction.

Even though I suspected autism for a while, the diagnosis has hit me in a way I didn’t expect. I keep finding myself wondering if I somehow said the wrong things in the assessments, or if they misinterpreted me. It feels strange to have this label that’s supposedly been part of me my whole life, yet right now it doesn’t feel like it “fits” or belongs to me. I can’t seem to sit with it — I feel numb, confused, shut down, and unsure how to cope or what to do next.

If anyone is willing to share how you processed your diagnosis, what helped you in the early days, or anything you wish you’d known at the start, I’d really appreciate it.

Parents

  • Hi Rayleigh,
    I had a similar experience a couple of years ago when I was assessed. Verbal confirmation in the session, a comment on a local group which may be running, or may have closed during Covid, and that was it. I have only recently seen comments on a report going to the GP and am chasing up whether there is such a thing for me and what it says.
    On processing the diagnosis the term I have seen that best describes it is grielief - a mix of grief for all the things that could have been, and relief in knowing to better tackle the future.

    Step 1 is about acknowledging that you now have additional information that provides a completely different perspective on your life, and that what you have been told before only applies from a different perspective.

    Step 2 is about going easy on yourself and taking it one day at a time. I erred to relief and was happy to tell others (my flawed trust in other people) and am now looking for a new job (that story is more complex then I make it seem).

    Step 3 is read and learn. Start with one topic e.g., senses, and read into how your senses may be different. You may be more or less sensitive to sounds, lights, touch etc. Also be aware that how you interpret the signals from your body may be different. I do not feel hot and cold properly, although I am obviously still affected by them. Consider hunger, thirst, etc.

    Step 4 is that we are all still different. Being autistic isn't a one size thing. Whether called spiky profiles, or other terms, it means that all the parts come together differently for each of us. Just because one person experiences the world in a certain way does not mean that you should too. This will also help if you get an attack of imposter syndrome (that you suddenly feel that you cannot be autistic because xxxx).

    If you have questions, then reach out to the group and ask. Chances are that someone may have a similar experience.

  • in reply to AutistIQ

    I hope you don’t mind me using grielief as a term for processing emotions from now on. That’s brilliant lol

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