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Just diagnosed and feel like I’m going backwards

444tism

Hi all,

I was diagnosed with Autism on Monday and even though it will take a while to process, I do feel hope for my future in terms of understanding myself for the first time; but at the moment, I’m just exhausted and it feels never ending. Unable to do basic chores, eating food out the packet - I never really feel hungry anyway. Washing my hair is even harder than normal and I hate the feeling of freshly washed hair next to my face on a good day. 


I’m a 49 year old female and I’d really love to connect with other Autistic people. It would be great to hear how others cope. I have a lot yet to learn but I’m grateful that I don’t have to feel so alone on this planet anymore.


I struggle to rest and end up in a scroll hole on my phone, which I can’t seem to stop once I’m in, even though I know it will exhaust me further. Although on the plus side, I do think I’m feeling a little more self accepting.

Apologies if I’m rambling on and for any typos. I’ve been editing and re reading this for far too long now Upside down

Anyway, thanks for having me on here Blush and I hope to hear back. 

  • in reply to Bunny

    Hi Bunny,

    Thank you so much for taking the time to send all this. I will check it all out. Really helpful!

    So happy to have found this community :-)

  • in reply to Maja

    Thank you so much for your reply and sharing your experience. Really helps to chat to people who get it doesn't it. Monday was a big day :-)

  • Welcome and thank you for your message because I find myself relating to it. 

    After slightly over 1yr of going through the Right To Choose referral for assessment pipeline, I also received the outcome of my ASD assessment this Monday - and as was zero surprise, I too have been diagnosed with Autism. 

    I'm 47, female, and also find it a confusing balance of hope for the future (and the value of self understanding) and being very overwhelmed and having taken a distinct step back in basic functional stuff. 

    What I'm trying to hold onto for myself is that thinking of steps as being forward or backward can mean I miss what's really going on for me: at any time I'm a cluster of things, some I understand and some I don't, some I'm aware of and many I'm not. But, me in whatever moment is a compilation of all the things going on behind it. Finally getting a diagnosis, for me, has been a massive journey and an outcome of about 15months of deep thought, reading, reflection, etc., and over a year of going through the gruellingly slow referral, assessment and outcome phase. 

    One of the biggest things for me was profound relief. I felt like this was the world acknowledging my struggles, and in some way therefore making it validated. Like the opposite of a sensation of being gaslit. And, of course, there's the overwhelm, the 'what now', the 'how do I learn to do me', and the sadness and sense of loss regarding the decades of my life where I feel I've suffered and missed out because of having been so hugely masked and hidden. 

    So, here's a big friendly kind and warm thought towards you and what this week means, and to me - for the same, and to this wonderful community of people and the experiences that are shared. 

    Thank you to all, and as a 1week old member of this community, Hello!  

  • Hi Scentsibubble

    Welcome to the community!

    You will be able to connect with autistic people here. Bunny has provided lots of useful information which may enable you to understand yourself better and practice self-care. 

    We are happy to have you with us.

    Best wishes.

    Christine Mod

  • Congratulations on your diagnosis and welcome to the community! Wave

    Following a diagnosis, it can be common for us to experience a lot of emotional dysregulation - I've linked to an article below about this. I also felt completely exhausted after my own diagnosis - you might find this article helpful on that front:

    NAS - Autistic fatigue and burnout

    After getting over that initial impact, my diagnosis turned out to be the start of a new journey of learning and adapting, rather than a conclusion with instant solutions. I'd suggest taking extra care to be patient to, and kind with, yourself - and to take your time with processing everything.

    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, and others covering the kinds of support that you can access. You might find them helpful as a starting point:

    NAS - How will I feel after receiving an autism diagnosis - includes perspectives from other autistic people

    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 are 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 might 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)

  • Hi I like reading, doing jigsaws, diamond painting, animals (have a family dog), wordsearches, card making, playing with fidgets, cuddly toys, watching YouTube and listening to music. 

  • Hi Scentsbubble,

    I don’t have any advice and others will be much more helpful than me at making suggestions, but I just wanted to say welcome and thank you for sharing how you’re feeling at the moment. You are amongst friends on here.