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
  • Hello,

    I have no advice, just wanted to say you've summed up very nicely exactly what I'm going through at the moment. I'm a healthcare professional in my 30's and was diagnosed earlier this year.

    I only had an assessment because it was suggested by my therapist, and to be honest I did not expect to get a diagnosis, nor did I particularly want one. The report itself was awful and I don't agree with a lot do it, or how it is worded. But having talked things through further with a psychologist, and doing further reading myself, I do think the diagnosis is correct even if the report is a bit rubbish. But now I feel like the rug had been pulled from under me and I don't really know who I am anymore. It's hard.

  • I haven't talked things through yet properly with a therapist but will shortly as I feel that would be helpful. I have learnt a great deal just from reading but most of it is swimming around in my own head at the moment. I have struggled with the concept of masking, I definitely do this but I guess it has felt more complicated than simply suppressing traits. I have spent/spend a lot of time trying to figure out social rules and strategies in an attempt to navigate interactions. I stumbled across a research article today on compensation which seems to have explained things much better for me than just the concept of masking. "Compensatory strategies below the behavioural surface in autism: a qualitative study" in case it is of any interest to you. I find also that compartmentalising my work day and minimising social interactions to just quality over quantity to be very helpful. I've stopped trying to build tolerance for more, it's not necessary and just drains me.

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  • I haven't talked things through yet properly with a therapist but will shortly as I feel that would be helpful. I have learnt a great deal just from reading but most of it is swimming around in my own head at the moment. I have struggled with the concept of masking, I definitely do this but I guess it has felt more complicated than simply suppressing traits. I have spent/spend a lot of time trying to figure out social rules and strategies in an attempt to navigate interactions. I stumbled across a research article today on compensation which seems to have explained things much better for me than just the concept of masking. "Compensatory strategies below the behavioural surface in autism: a qualitative study" in case it is of any interest to you. I find also that compartmentalising my work day and minimising social interactions to just quality over quantity to be very helpful. I've stopped trying to build tolerance for more, it's not necessary and just drains me.

Children
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