Emotional rollercoaster following recent diagnosis

Hello.  I’m a 55 year old female, recently diagnosed with autism, and have been going through an emotional rollercoaster since the assessment.

On the one hand, it’s relief that comes with validation of struggle.  It explains so much about my life – not just the obvious stuff, like difficulty with human interaction and jobs, but also some stuff that I hadn’t initally realised was related (like my insomnia, and extreme sensory responses).  It hasn’t just been in my head, and I wasn’t being deliberately difficult.

On the other hand, just because struggle has been validated doesn’t mean it will go away. The world will continue in the same way, and I will continue to fail to fit in.

The assessment itself dragged a lot of stuff up that I’d been more-or-less managing to keep a lid on.  I now feel acutely aware of how little I am understood by the people around me, and how alone that makes me.  I’m questioning quite how robust my coping mechanisms are.  And I’m even more conscious than usual about how I’m interacting with people and what I’m saying.

And, of course, it’s never nice having your personality laid bare.  And this isn’t a situation where people are trying to say nice things about you: this is the warts and all version which justifies the diagnosis.

And then, like many people, there’s the grief.  A lifetime of wasted opportunities, due to lack of understanding on my part and on others.

For a long time I’ve been surviving alone in my bubble, but my bubble currently feels quite fragile.

A lot of people who read this will have experienced something similar.  Does anyone have any advice on how to get through this stage of the rollercoaster, other than the obvious (i.e. time)?

Thanks!

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

    I can certainly relate to how you're feeling. Following a diagnosis, it can be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about getting our diagnosis / 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! 

    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 instant solutions for my various ASD-related difficulties. I was in a state of emotional turmoil for quite a while after my diagnosis. Patience and being kind to myself were - and remain - important in working through it all.  

    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

    Therapy (or counselling) is often recommended after a diagnosis for your GP to arrange. If you prefer, you should be also 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

    In addition to hopefully finding this community helpful, you might also like to ask your GP for a referral to a social prescriber. Their role is to work with you, potentially over several sessions, to develop a personalised care and support plan that meets your practical, social and emotional needs. This is available throughout the UK and could include helping you to find local support groups, for example. The article below explains more:

    NHS England - Social prescribing

    You might be able to find some local support groups via the the NAS's directory and/or through a local NAS branch:

    NAS - Autism Services Directory

    NAS - Branches

    You might also be able to find some local groups by searching on Facebook and/or Google, including "autism" and your home area in the search phrase.

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

    I can certainly relate to how you're feeling. Following a diagnosis, it can be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about getting our diagnosis / 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! 

    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 instant solutions for my various ASD-related difficulties. I was in a state of emotional turmoil for quite a while after my diagnosis. Patience and being kind to myself were - and remain - important in working through it all.  

    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

    Therapy (or counselling) is often recommended after a diagnosis for your GP to arrange. If you prefer, you should be also 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

    In addition to hopefully finding this community helpful, you might also like to ask your GP for a referral to a social prescriber. Their role is to work with you, potentially over several sessions, to develop a personalised care and support plan that meets your practical, social and emotional needs. This is available throughout the UK and could include helping you to find local support groups, for example. The article below explains more:

    NHS England - Social prescribing

    You might be able to find some local support groups via the the NAS's directory and/or through a local NAS branch:

    NAS - Autism Services Directory

    NAS - Branches

    You might also be able to find some local groups by searching on Facebook and/or Google, including "autism" and your home area in the search phrase.

Children