Newly Diagnosed, now what?

I am a 33yr old woman and have just received a level 1 autism diagnosis. It has shook me a bit more than I thought as although I was confident I had autism the emotional response I had to the confirmation was unexpected.

Now what do I do? I don't know what I'm supposed to do now or how to view my life. I don't really have friends and no parents to talk to. I don't want to unload too much on my husband and just want advice as to what I should do now. 

How much of what I think is me is truly me? And how much os the fake me I put on for the world and how do I distinguish the two? I just need some advice from others who have been diagnosed late in life and how you handled it and figured out who you were.

Thank you

  • Thank you for your replies, support and advice. It's been a bit of a whirlwind day with so many thoughts going through my head it's hard to piece it together properly.

  • Why do you have to do anything? You are the same person you were before you received a diagnosis of autism spectrum disorder (ASD). You have not changed. Now you have an explanation as to why you do/say/feel certain things/ways. People react to an  diagnosis in a variety of ways, and there's no "correct" way to feel. Some people may feel relieved to find a reason for their thoughts, feelings, and actions. They may also feel a sense of relief in knowing they're not alone in finding certain things difficult; Others may feel shocked or disbelieving at first. Some may need time to come to terms with the diagnosis or find it difficult to adjust. Some experience a range of emotions, including both positive and negative, or even conflicting emotions at the same time. Hopefully the idea of neurodiversity (i.e., the idea that there's natural variation in how people's brains work) will help you adjust to your diagnosis and if you don't already start viewing ASD positively. I was older than you when I was diagnosed (years ago) and I still spend a lot of time learning about ASD, especially reading books written by women with ASD. Reading has helped me understand who I am, about my own strengths and challenges. I know that having ASD is only a portion of who I am! I also had no support and for a long time was not comfortable disclosing to others that I have a ASD. I now say I am neurodivergent and sometimes "I'm on the spectrum."

  • Welcome to the latelings club. Do not try and find all the answers at once. It takes time to process this new you, even if you expected it. Be kind to yourself as you are not broken and do not need fixing.

    Read some books by autists and academics to get a full flavour of the many different aspects before you go into a deep dive into your past looking for the if's and ah's.

    Take heed of what Bunny has posted and reach out to the community. Unfortunately nobody can tell you how to feel just now.

  • Hi and welcome to the community!

    You're not alone in having reacted emotionally - I cried straight away when my autism was confirmed, and others here have felt similarly. :)

    During the period following a diagnosis, it can be common for us - especially as late-diagnosed adults - to experience some emotional dysregulation. Aside from relief and other positive emotions, this can include working through a phase where we experience (backward-focused) anger, frustration, grieving and more.

    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 will I feel after receiving an autism diagnosis

    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

    In terms of what to do next, my advice at this point (ie soon after your diagnosis) would be to try and give yourself some time and breathing space to process and absorb everything that you've been through, and let your feelings settle down.

    For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of ready-made solutions for my various difficulties.

    Therapy is often recommended after a diagnosis - perhaps along with other actions for your GP, detailed in your diagnosis report.

    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, myself included:

    The Autistic Survival Guide to Therapy