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Feeling very sad and alone since diagnosis

Fran123

Hello, 

I’m 42 and have recently been diagnosed. And I’m not sure what to do next.

my assessment came about by being diagnosed with low mood and depression along with consistent panic attacks but nothing was helping, medication and talking therapies never seemed to help at all.

5 weeks ago I was actually shocked that I was diagnosed - I always thought I was just weird and anti social. After my diagnosis which was done on line I was sent a leaflet via email and that was it. Sent on my way with best wishes. 

I am now feeling even worse, my panic attacks are awful, my driving anxiety is even worse and the tears are daily. I feel lost and I’m struggling to find help. My GP said let just up your medication again and see how you go. Nothing has helped.  I’m on a wait list to see a mental health practitioner but it just feels like I’ve been given a label and that should solve things, when actually I’m still struggling and there is nothing I can do. 

did anyone else feel like this after a late diagnosis? Will the sadness ever go away? 

  • Whilst I appreciate that you're already receiving medical care, you might also find these articles helpful.

    They include discussion of why we, as autistic people, might experience the conditions:

    NAS - Depression

    NAS - Anxiety

    Including how anxiety can lead to autistic fatigue and burnout:

    NAS - Autistic fatigue - a guide for autistic adults

  • Hi Fran - welcome to the community.

    Throughout my life, I have suffered from recurrent depression and anxiety, along with a lack of benefit from antidepressant medications. In respect of those issues, learning that I am autistic was an important breakthrough for me, as I hope it can also be for you - so congratulations on your diagnosis.

    That being said, during the period after diagnosis, it can be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides potentially feeling relief, this also can include experiencing negative emotions like shock, confusion, (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 you might feel after a 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

    You might also find it helpful to read through the resources here:

    NAS - What is autism

    Otherwise, in terms of what to do next, my advice at this point would be to give yourself plenty of time and breathing space to process and absorb everything that you've been through, and let your feelings settle down.

    As for many others here, my own diagnosis turned out to be the start of a new journey, rather than a conclusion full of instant solutions for my ASD-related difficulties. 

    Therapy (or counselling) is often recommended after a diagnosis, as a follow up action for your GP to arrange. In anticipation of that, 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

  • I was diagnosed at 50 and like you sent off into the world with no help or support, I think the feeling was that I'd coped for 50 years and I could carry on. Unlike you though, I found my diagnosis a massive relief, at last there was an actual real world reason why I was so different to everyone else. I took great pleasure in telling an ex that I was ASD, we split up because he couldn't cope with me being different, among other reasons, but that was one of the biggest. There are lots of books that could give you an insight, there maybe groups local to you too. It does sound like you could be in burnout, you certainly sound exhausted by it all. Give your self some time, a diagnosis is a jumping off point, not the end of the road. Gradually you can start to look at your life through an autistic lens and maybe some of things that have been troubling you will feel less troublesome, doing this with the right therapist could be useful, but it has to be with the right therapist and the right sort of therapy.

    Maybe start off with watching Christine McGuiness's documentary about her autism discovery, it was an eye opener for me and I'd never felt more recognised than I did watching this program.

  • I was diagnosed at 49 just over a year ago, it's an emotional rollercoaster, you have days where things start to make sense that didn't before, then days of longing to be "normal".

    You sound like you could be in burnout too, look that up on here as we've all been there and posted about it loads, it can take time to get out of and there's lots of ways to help yourself to once you recognise it.

    Things will improve, you'll start to understand yourself more now you know what drives your behaviours. Spend some time researching autism and look into any specifics that you feel fit for you.

    First and most important thing is take care of yourself, take time to rest and digest it. There's lots of friendly weird and antisocial folks on here that will be more than happy to try and help, me included!