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Newly Diagnosed

Archmagos_J905

Hi, I'm new here, and am mostly looking for advice and a friendly ear (or whatever the text equivalent would be).

I spent years trying to use CBT for anxiety, mostly social anxiety, before a therapist suggested I may be on the spectrum. CBT, as well as other forms of self help such as meditation, never seemed to work, to the point where I just reckoned that I just wasn't meant to feel any different. Anyway, I was referred for an ASD assessment, which I had at the beginning of May this year.

I was diagnosed as being autistic after this assessment. After my diagnosis, I got discharged from the service with no further word or support, with little more than being told to look at online forums as a way forward (so here I am, despite me finding posting online a bit nerve-wracking!)

I'm in my mid-thirties, so my diagnosis has come later than quite a few people, I'm sure. The whole thing has left me feeling lost; it's made me re-evaluate, well, everything. Every past interaction, reaction etc. How I'm feeling seems to change really quickly, and seemingly for little to no real reason, too. Also, I've been feeling less able to do things, mostly interacting with people, that I've been doing with minimal fuss for years. It's been kind of isolating, frustrating, and a bit worrying (my job is in customer service, which I've been working in almost continuously since my early twenties). It's been a lot to take in, and I don't know where to start. I've watched a few channels on Youtube, but that's been it really.

I suppose one of the questions I'd like to ask is, is this reaction to a diagnosis normal? (Obviously I'm in completely new territory, so there's no offence meant.) Does anyone have any techniques or resources that could be a good starting point?

Anyway, thanks to anyone who read this ramble-y monologue. (Apologies if I've put this in the wrong part of the forum).

Parents

  • Congratulations on your diagnosis and welcome to the community!

    Following a diagnosis, it can indeed be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about now having an explanation for our past difficulties, this can also include working through a phase where we experience confusion, uncertainty, and/or (backward-focused) anger, frustration, grieving and more. So please don't worry - it's normal! 

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

    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 - including a template letter that you can use to request a support plan.
    • 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. 

    In respect of your previous CBT, this doesn't always suit autistic people without being adapted to our needs. You might find it helpful to borrow or buy this book, which includes discussion of this and various other 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

    As a starting point, this book enabled me to make some immediate, helpful changes - perhaps you might also find it helpful:

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

Reply

  • Congratulations on your diagnosis and welcome to the community!

    Following a diagnosis, it can indeed be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about now having an explanation for our past difficulties, this can also include working through a phase where we experience confusion, uncertainty, and/or (backward-focused) anger, frustration, grieving and more. So please don't worry - it's normal! 

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

    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 - including a template letter that you can use to request a support plan.
    • 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. 

    In respect of your previous CBT, this doesn't always suit autistic people without being adapted to our needs. You might find it helpful to borrow or buy this book, which includes discussion of this and various other 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

    As a starting point, this book enabled me to make some immediate, helpful changes - perhaps you might also find it helpful:

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

Children
  • in reply to Bunny

    Hi, thank you for all the information, it seems like a great starting point so, much appreciated. I've been lucky that the people I've told so far have been understanding and accepting, which has really helped. I'm having to build up to more formal support though, as it's still all very new.

    Thanks again!

  • in reply to Bunny

    Hello, everything you describe is common.

    There are people here who have been diagnosed later, 40s, 50s etc.

    As it is not curable and they can only treat the co-occuring conditions that happen as a consequence, like depression, you are mostly left to figure out what to do with your life yourself.

    It will take time to understand how it affects you and what changes you want to make to make things easier.