• Replies 14 replies
  • Subscribers 12 subscribers
  • Views 450 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Feeling vulnerable and invisible after diagnosis

Leaflady4

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
  • Leaflady4 said:
    I am also surprised that the few people I have told in my personal and work life appear quite disinterested by the diagnosis.

    I found it useful to ask myself the question "why should they care?".

    There are times where my lack of social skills extend to knowing what other people think or care about and this seems to be one of those times.

    I would expect a partner to care (mine tried but failed), potentially a parent to care (although remember that autism is normally hereditary so they may be as poorly equipped to deal with it as me) but beyone that I doubt many family members are likely to take more than a passing interest then move on to the next episode of Strictly.

    There remains such a stigma about any mental health issues that this may be scaring them away too, not knowing if you are just being revealed as some sort of crazy person.

    This helped me put it in context that I was expecting too much of them.

    It helps you realise who are those who really care about you.

    Leaflady4 said:
    I don't know how to communicate that this is a big deal for me

    Don't expect this from family has been my experience. If you need someone to talk it through with then get a therapist - they know their stuff and can also help you with the coping.

Reply
  • Leaflady4 said:
    I am also surprised that the few people I have told in my personal and work life appear quite disinterested by the diagnosis.

    I found it useful to ask myself the question "why should they care?".

    There are times where my lack of social skills extend to knowing what other people think or care about and this seems to be one of those times.

    I would expect a partner to care (mine tried but failed), potentially a parent to care (although remember that autism is normally hereditary so they may be as poorly equipped to deal with it as me) but beyone that I doubt many family members are likely to take more than a passing interest then move on to the next episode of Strictly.

    There remains such a stigma about any mental health issues that this may be scaring them away too, not knowing if you are just being revealed as some sort of crazy person.

    This helped me put it in context that I was expecting too much of them.

    It helps you realise who are those who really care about you.

    Leaflady4 said:
    I don't know how to communicate that this is a big deal for me

    Don't expect this from family has been my experience. If you need someone to talk it through with then get a therapist - they know their stuff and can also help you with the coping.

Children
  • in reply to Iain

    Thank you Iain, I think all of this is very true. Worth adjusting any expectations I have. I suppose also, if I think about how I have communicated it so far to others, it has been fairly casually. I must be trying to gauge others reactions while also letting it settle in my mind. Looking forward to connecting with more autistic people in my life.