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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

  • Welcome to the site and congratulation on your diagnosis.

    AUthenticity said:
    How have other people navigated this turbulent and traumatic time? I don't even know what it's like to be properly unmasked.

    I saw it as understanding the cause of my condition so it gave me the ammunition to learn about it and find ways to work better with it to reduce my stress levels.

    I'm not sure many of us ever fully unmask as we have to exist in a society that is simply unprepated for us in that sort of form. It scares people when you are too different, too blunt and they are largely simply unprepared to learn about our condition and adjust their expectations to accommodate us.

    At the moment only about 2% of people are diagnosed as autitic (this seems likely to rise to up to 5% in a decade or two as more people are assessed) so expecting the other 98% of population to change for us at this stage is probably unreasonable.

    So it makes sense that to co-exist with the vast bulk of the population we would need to mask at least a bit to integrate with them.

    I used this discovery stage to educate myself, learn ways to strengthen my weaknesses and work out what I was willing to change.

    I used a therapist who was skilled with helping autists (she had 2 autistic grown children so had plenty of experience) and worked through my issues and traumas with her.

    AUthenticity said:
    It is such a lonely experience,

    It is, but by strengthening yourself you have a stronger base to work from in future. You will only ever be able to rely on yourself in life so make sure that person is the stongest they can be, the most capable, the most informed and everything else is just icing on the cake.

    Friendships are a challenging one a later in lite there are typically fewer people willing to make more friends as their live are full by then. Keep at it, be patient and forgiving and some will come along eventually.

    For me a big part was shifting from feeling a victim to feeling in control. Once I made that change it made a massive difference.

  • in reply to Iain

    Afternoon Iain,

    Thank you for your response, everything you said resonates very deeply. I agree that diagnosis rates are likely to increase, in part because I do feel like the tempo and underlying structure of the world today is increasingly at odds with the autistic experience.

    More than just being unprepared to learn, I also think that people simply don't need to learn. Trying to build empathy with, or even just rational compassion for, another group is incredibly demanding, and even the kindest and most open-hearted will struggle to find the energy to do so when their lives are already so busy. 

    I think I need to consider changing therapists too, as mine is not a specialist and I don't think they can offer the help I need at the moment. 

    As for friendships, I'm also trying to understand what it means for all my old friends. I've felt very distant from even my closest friends from school and university - again, I'm trying not to overthink myself out of aspects of my 'old' life that are still vital for the future. At the moment everything feels like it's up for grabs.

    I can really learn from your idea about trying to not have a victim mentality. I had the same revelation last week, so I'm going to really try to focus on that. This is happening, so I can either let it win or try to consciously take control. Still early days for that mindset, but hopefully with practice it will gain momentum and change how I see things.

    Thanks Iain

Reply
  • in reply to Iain

    Afternoon Iain,

    Thank you for your response, everything you said resonates very deeply. I agree that diagnosis rates are likely to increase, in part because I do feel like the tempo and underlying structure of the world today is increasingly at odds with the autistic experience.

    More than just being unprepared to learn, I also think that people simply don't need to learn. Trying to build empathy with, or even just rational compassion for, another group is incredibly demanding, and even the kindest and most open-hearted will struggle to find the energy to do so when their lives are already so busy. 

    I think I need to consider changing therapists too, as mine is not a specialist and I don't think they can offer the help I need at the moment. 

    As for friendships, I'm also trying to understand what it means for all my old friends. I've felt very distant from even my closest friends from school and university - again, I'm trying not to overthink myself out of aspects of my 'old' life that are still vital for the future. At the moment everything feels like it's up for grabs.

    I can really learn from your idea about trying to not have a victim mentality. I had the same revelation last week, so I'm going to really try to focus on that. This is happening, so I can either let it win or try to consciously take control. Still early days for that mindset, but hopefully with practice it will gain momentum and change how I see things.

    Thanks Iain

Children
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