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Navigating a recent late diagnosis

AUthenticity

Hello everyone,

Last year at the age of 42 I succumbed to my second severe burnout, which led me to finally look beyond the ill-fitting and incomplete labels of 'introvert', 'INFJ' and 'HSP' and start to accept that autism was the grand unifying theory that made me make sense.

To be honest, I wish I could say that I felt the relief that some report experiencing following a diagnosis. I am still in the early stages of the grieving process, and I am severely struggling to reframe and reorient my life in a way that aligns with this new reality.

There are so many complex reasons why I am finding it so hard. No doubt there is a lot of internalised ableism to de-programme. I also feel like I have spent my whole life levelling up a socially acceptable avatar while neglecting and suppressing myself and my undesirable traits - traits that I that I expected to simply grow out of, or overcome through brute force by changing my circumstances (jobs, partners etc) and therapy to make me 'less sensitive'.

Of course none of these strategies paid off, hence why I am now in a state of burnout and unsure about how to make the transition to a sustainable life post-diagnosis. 

How have other people navigated this turbulent and traumatic time? I don't even know what it's like to be properly unmasked. I don't know how to behave anymore, I'm trapped oscillating between the avatar and a huge question mark.

I have a therapist still, and I have told some close people. But I am not getting the support I need, and I don't think I can plot a course through this on my own without the guidance of people who know what this feels like. It is such a lonely experience, so any advice, guidance or friendship that people can offer would be life changing.

Thank you.

Parents

  • Hi and welcome to the community.

    I'm really sorry to hear that you're having such a hard time at the moment. It's a process, unfortunately, and can take some time - as it did / is doing for me.

    Burnout

    There's a good NAS article here that might be of some help:

    NAS - Autistic fatigue and burnout

    There's also some great advice here from a neurodivergent author (who's also a clinician and advocate), along with a link to buy and download her workbook and toolkit if you wish. I suspect these form the basis for her book that's due for release in April. But hopefully this might help in the meantime:

    Autistic Burnout Recovery: How to Build a Recovery Plan

    Post diagnosis

    You might find these articles helpful - they relate directly to a couple of points you made:

    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 
  • in reply to Bunny

    Good afternoon Bunny,

    Thank you for responding so quickly, and with all that useful material. I am going to make a cup of tea and work through it all this afternoon! 

    How long have you been going through this process? One of the things I've noticed is that some people talk about burnout and accepting their diagnosis in terms of weeks, others in months and some in years. It's already been about 6 months for me and it still feels like I am still at the very start of the journey. 

  • in reply to AUthenticity

    You're welcome!

    AUthenticity said:
    How long have you been going through this process?

    It's coming up to 18 months since my diagnosis, and I certainly don't feel like I'm at the end of my journey yet.

    I think I'd much be further along by now if my GP had followed up on the various actions that were recommended in my assessment report. That's also partly my responsibility, because I haven't chased them.

    I did follow up on the therapy / counselling, because I could more easily understand how it would benefit me. I keep procrastinating about the other matters (who'd have thought?), but I've also been sidetracked by some physical health issues that are under ongoing investigation and that feel more pressing. Anyway, I'm due to see them again soon, so perhaps I'll finally press that button, too.

    I used this as my guide in advance of starting counselling (my choice, rather than more therapy, which I've tried before). I know you said you're having therapy already, but maybe it could still be helpful in some way. Many of us here have found it useful:

    The Autistic Survival Guide to Therapy

Reply
  • in reply to AUthenticity

    You're welcome!

    AUthenticity said:
    How long have you been going through this process?

    It's coming up to 18 months since my diagnosis, and I certainly don't feel like I'm at the end of my journey yet.

    I think I'd much be further along by now if my GP had followed up on the various actions that were recommended in my assessment report. That's also partly my responsibility, because I haven't chased them.

    I did follow up on the therapy / counselling, because I could more easily understand how it would benefit me. I keep procrastinating about the other matters (who'd have thought?), but I've also been sidetracked by some physical health issues that are under ongoing investigation and that feel more pressing. Anyway, I'm due to see them again soon, so perhaps I'll finally press that button, too.

    I used this as my guide in advance of starting counselling (my choice, rather than more therapy, which I've tried before). I know you said you're having therapy already, but maybe it could still be helpful in some way. Many of us here have found it useful:

    The Autistic Survival Guide to Therapy

Children
  • in reply to Bunny

    Good evening Bunny,

    I suppose that the work of self discovery and growth is never ending for everyone, so it makes sense that there are even more layers of work to do when you discover you are neurodivergent.

    I completely understand your procrastination problem too - I've been trying to work out whether it's pathological demand avoidance (PDA) as I've always been so bad at doing things like meditation or going to the GP to get help. I always used to joke (somewhat unoriginally) that if there was an Olympic games for procrastination I'd never get round to applying! 

    I'm really sorry that you're having some physical health issues. I understand why they must feel more pressing. I find physical health problems far more tangible, and the interventions are usually clearer and more direct. I hope that you are coping with whatever you are going through, and that the investigations bring you good and reassuring news.

    Thank you for sharing the link to that book - I have downloaded it onto my Kindle to start reading tonight. I have just finished re-reading Pete Wharmby's book 'Untypical' too, which I really enjoyed.