Feeling vulnerable and invisible after diagnosis

Wondering if this is a common experience. I am a professional working in healthcare and have recently been diagnosed in my early 40s as level 1 ASD. I have had awareness of my autistic traits since my 30s but was not going to worry about a diagnosis as I believed I was capable of helping myself with self awareness and lifestyle changes. As time went on I became increasingly interested in understanding the full impact an autistic neurotype has had on my life and self understanding so I went through the diagnostic process. I was also hoping other members of my family would recognise their own traits and gain some insight into themselves and strained family dynamics (one family member has). In a way I feel that the diagnosis has shattered my sense of self and left me feeling very vulnerable. I don't see this as a bad thing, it feels more that I have an opportunity to truly understand myself and move forward more authentically, hopefully with a more solid foundation. It is helping me understand why seemingly simple things like maintaining friendships, socialising and bright lights lead to stress and dissociative experiences for me that are difficult to communicate. It has also helped me understand why I have been vulnerable to OCD a few times in my life. Is this feeling of intense vulnerability a common experience? I am also surprised that the few people I have told in my personal and work life appear quite disinterested by the diagnosis. No one really asks me about my experience or what it is like to be diagnosed late in life and to look back on my life with a different lens. I don't know how to communicate that this is a big deal for me. My whole life I have felt that I was walking it alone, hiding my internal world and just doing what needed to be done. This is despite having plenty of people in my life that care about me. I don't understand their lack of curiosity. If I try to talk about my diagnosis it is often met with silence or a brief acknowledgement then a subject change. No one has disagreed with the diagnosis at least, I just don't understand their lack of curiosity and it makes me feel invisible all over again. Can anyone relate?

Parents
  • Hi  

    Yes I can relate.

    Late diagnosed healthcare professional myself too :-)

    Not knowing who oneself is in context - yep.

    As   indicates "seeing life thro' a new lens" part of this.

    Also perhaps that one is confronted with a diagnosis that is made by "deficit based" analysis, 

    There is the sense that if this has been hidden from oneself and there are aspects of human behaviour that one might be "excluded" from direct insight into perhaps.  This contributed to a significant increase in the sense of vulnerability for myself.  As well as, in my case, coming to diagnosis with episodic burnout in the mix.

    I am coming out of this now - worst issue is with workplace (ironically one might think!)

    My part in healthcare system is as a therapist.  In context I have long observed that making a diagnosis is the easy part...

    That sense of "walking it alone" chimes (somewhat discordantly to me with the original meaning of an autism diagnosis as an observation of detachment and inner reality.  A couple of suggestions to share as ways to consider this tho' that perhaps are less scarily pathological...

    Being autistic in a heavily neurotypically biased society is hard work and one has internalised expectations about oneself based upon neurotypical expectations.  Yep no matter how damn daft they are we that conditioning took place.

    So that kindof explains the sense of doing "what needed to be done" according to the neurotypical expectations but doing so that is in some way not authentic to what's the way the autistic you is made to live maybe?

    I explained that same sentiment to my wife of more than 25 years... (doh! :-)  )    But... you're still the same person... we have known you've been weird for years...  hehe well I didn't, I've been trying to act normal for years!

    It's really hard work having to act - let alone almost all the time, eg when one is socially engaged.  That's why it's a skilled profession that requires special training and when done well is really well paid and gets lauded so much.

    From the perspective of other people being interested in you and letting them know what a big deal it is...

    Hmmm... do they want to and are they ready for it spring to mind.  Maybe give them reasons why they might want to (like with a partner et al  how (even) richer will be in the relationship.  Maybe also engage them in "graded exposure" to the diagnosis and its implication.

    This'll be conscientious maybe but.... I am now doing my best to lower my expectations of other people at the same time as lowering my expectations of myself.

    So, in context if I'm really good and do the right thing and "be nice" et al then maybe I won't get chastised, excluded etc etc.  for what I was doing since I was a kid when I was simply being my authentic autistic me...

    Anyway sorry to have rambled on 

    Welcome to the club you have always been in but never realised it before! 

    I reckon you're probably in the right place.

    All the best wishes!

Reply
  • Hi  

    Yes I can relate.

    Late diagnosed healthcare professional myself too :-)

    Not knowing who oneself is in context - yep.

    As   indicates "seeing life thro' a new lens" part of this.

    Also perhaps that one is confronted with a diagnosis that is made by "deficit based" analysis, 

    There is the sense that if this has been hidden from oneself and there are aspects of human behaviour that one might be "excluded" from direct insight into perhaps.  This contributed to a significant increase in the sense of vulnerability for myself.  As well as, in my case, coming to diagnosis with episodic burnout in the mix.

    I am coming out of this now - worst issue is with workplace (ironically one might think!)

    My part in healthcare system is as a therapist.  In context I have long observed that making a diagnosis is the easy part...

    That sense of "walking it alone" chimes (somewhat discordantly to me with the original meaning of an autism diagnosis as an observation of detachment and inner reality.  A couple of suggestions to share as ways to consider this tho' that perhaps are less scarily pathological...

    Being autistic in a heavily neurotypically biased society is hard work and one has internalised expectations about oneself based upon neurotypical expectations.  Yep no matter how damn daft they are we that conditioning took place.

    So that kindof explains the sense of doing "what needed to be done" according to the neurotypical expectations but doing so that is in some way not authentic to what's the way the autistic you is made to live maybe?

    I explained that same sentiment to my wife of more than 25 years... (doh! :-)  )    But... you're still the same person... we have known you've been weird for years...  hehe well I didn't, I've been trying to act normal for years!

    It's really hard work having to act - let alone almost all the time, eg when one is socially engaged.  That's why it's a skilled profession that requires special training and when done well is really well paid and gets lauded so much.

    From the perspective of other people being interested in you and letting them know what a big deal it is...

    Hmmm... do they want to and are they ready for it spring to mind.  Maybe give them reasons why they might want to (like with a partner et al  how (even) richer will be in the relationship.  Maybe also engage them in "graded exposure" to the diagnosis and its implication.

    This'll be conscientious maybe but.... I am now doing my best to lower my expectations of other people at the same time as lowering my expectations of myself.

    So, in context if I'm really good and do the right thing and "be nice" et al then maybe I won't get chastised, excluded etc etc.  for what I was doing since I was a kid when I was simply being my authentic autistic me...

    Anyway sorry to have rambled on 

    Welcome to the club you have always been in but never realised it before! 

    I reckon you're probably in the right place.

    All the best wishes!

Children
  • Thanks for your response. It really is nice to not feel alone in this experience. It's certainly an interesting process of discovery. The more I read and learn, and then observe in my interactions with others, I realise now that I have spent a lot of time mildly dissociated. I am feeling more 'awake' for lack of a better word but also hyper aware of when I am not being authentic. I think the process needs to be graded as you mention, not just for others but also myself as it is a lot to take in and to adjust to when trying to navigate things differently and in a more sustainable way.