Experiences of those who lived without diagnosis for some time

Hi :) I only recently had a formal diagnosis. It felt very liberating in terms of my identity, Lots of things started to make sense very quickly. I wanted to understand the experiences of other people with autism, as I am at this difficult crossroads where who I reveal this too is a bit of a minefield. To me it doesn't change anything but I feel like it might affect my career or relationships. Other peoples lack of understanding or willingness to engage with me is what worries me the most, as its kind of what I have been dealing with the first 45 years of my life up until now. Trying to sustain a job with all of the added difficulties, whilst having to feel somewhat inadequate internally for these, is ridiculous. Don't feel obliged to share anything personal, but your experiences and tips would be welcome as the last few weeks have been a bit of an emotional rollercoster.

Parents
  • Hello!

    I was diagnosed earlier this year, I'm a 32 year old woman. I have a long history of anxiety with a side of depression from being a teenager. I'd always felt weird, had trouble fitting in, maintaining friendships and holding down a job. I'm academic, performed well in school, college and ended up with two degrees. 

    I haven't revealed my diagnosis to my parents as I'm worried they will be hard on themselves for missing the diagnosis even though I don't feel that way, autism in girls was very poorly understood back in the 90s and early 00s. My partner was encouraging in me getting the diagnosis and I think he's along the same lines as me, in thinking 'oh this makes sense now'. I did inform my work and requested reasonable adjustments, I have had attendance issues due to stress and anxiety, they did not grant my reasonable adjustments which has lead to me resenting my managers and feeling very unsupported. I did tell my immediate team, four other women I work with, they were supportive and one responded with, 'Oh! That's why you get so stressed!' which was honestly so validating! 

    In terms of myself, it's funny, sometimes I get imposter syndrome and think I can't be autistic, they must have made a mistake! Then I'll become really upset because a plan has changed unexpectedly or overwhelmed because there's a bad smell or jump out my skin because the bus made a whooshing noise or be talking to my partner and realize I'm not looking at him or have someone tell me a joke and stare blankly back at them because I don't get it and I think, 'Oh yes, you're autistic'

    I do feel like I have a new lens to see my life experiences through, I think back to my childhood sometimes and a memory will pop up, for example, I remembered recently going to the shopping centre with my mum, she would want to walk through the food court to leave and I was always distressed and would refuse because it smelt bad to me, all different restaurants food combined, that wouldn't bother most people but to me as a young child it was overwhelming. 

    My assessor said that years ago I wouldn't have been diagnosed as I'm 'high functioning' (masking as well) and the knowledge and awareness has changed. I feel more empathetic and understanding to myself for what I previously saw as faults. It has taken time and I'm not 100% there with accepting the diagnosis but I am glad I was assessed and diagnosed. There's nothing wrong with being autistic, my brain just works a bit differently. 

Reply
  • Hello!

    I was diagnosed earlier this year, I'm a 32 year old woman. I have a long history of anxiety with a side of depression from being a teenager. I'd always felt weird, had trouble fitting in, maintaining friendships and holding down a job. I'm academic, performed well in school, college and ended up with two degrees. 

    I haven't revealed my diagnosis to my parents as I'm worried they will be hard on themselves for missing the diagnosis even though I don't feel that way, autism in girls was very poorly understood back in the 90s and early 00s. My partner was encouraging in me getting the diagnosis and I think he's along the same lines as me, in thinking 'oh this makes sense now'. I did inform my work and requested reasonable adjustments, I have had attendance issues due to stress and anxiety, they did not grant my reasonable adjustments which has lead to me resenting my managers and feeling very unsupported. I did tell my immediate team, four other women I work with, they were supportive and one responded with, 'Oh! That's why you get so stressed!' which was honestly so validating! 

    In terms of myself, it's funny, sometimes I get imposter syndrome and think I can't be autistic, they must have made a mistake! Then I'll become really upset because a plan has changed unexpectedly or overwhelmed because there's a bad smell or jump out my skin because the bus made a whooshing noise or be talking to my partner and realize I'm not looking at him or have someone tell me a joke and stare blankly back at them because I don't get it and I think, 'Oh yes, you're autistic'

    I do feel like I have a new lens to see my life experiences through, I think back to my childhood sometimes and a memory will pop up, for example, I remembered recently going to the shopping centre with my mum, she would want to walk through the food court to leave and I was always distressed and would refuse because it smelt bad to me, all different restaurants food combined, that wouldn't bother most people but to me as a young child it was overwhelming. 

    My assessor said that years ago I wouldn't have been diagnosed as I'm 'high functioning' (masking as well) and the knowledge and awareness has changed. I feel more empathetic and understanding to myself for what I previously saw as faults. It has taken time and I'm not 100% there with accepting the diagnosis but I am glad I was assessed and diagnosed. There's nothing wrong with being autistic, my brain just works a bit differently. 

Children