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
  • I get this completely. I have one member of family who, whilst they are supportive of me in general, made a comment to another family member when they learned of my diagnosis. They said to put someone with issues like me in the same category as people who are non-verbal and so on, is an insult to those with severe needs. Basically, I think it's a lack of knowledge of ASD, a denial or lack of understanding of what I've dealt with my entire life, and a struggle with the idea that someone they were brought up with might have a disorder that nobody ever spotted. There is also the potential that they are in denial themselves about the fact they might not be neurotypical either. It hurts and I feel just as isolated now as I have my entire life. Not that I expected to get a diagnosis and for people to suddenly just get me or want to question me, I knew that wasn't likely for me. I do feel like it's a touchy subject and that if I bring it up it makes people uncomfortable. I only found out my diagnosis on Monday and I wouldn't say I've discussed it very much, so it can't be that I've bored them to death already.

  • I almost wish in a way that my level of autism had a different name... as it seems it is a common thought process for many to compare the autism levels and insinuate that level 1s are somehow trying to take away supports from those with profound autism. Again it comes down to knowledge, many don't hesitate to comment and judge with very little actual knowledge of the autism spectrum.

Reply
  • I almost wish in a way that my level of autism had a different name... as it seems it is a common thought process for many to compare the autism levels and insinuate that level 1s are somehow trying to take away supports from those with profound autism. Again it comes down to knowledge, many don't hesitate to comment and judge with very little actual knowledge of the autism spectrum.

Children
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