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pre-diagnostic assessment

Inula

Hello all

I'm 62 years old and I've just booked to have a pre-diagnostic assessment. My appointment is in mid July. I've not told anyone about this yet (so you're the first to know) 

All of my life I've struggled with making friends and feeling like I actually belong somewhere but it wasn't until my 40 year old daughter was  getting diagnosed that I started to understand that we share many of the same traits (not just the friendships one)  and doing those online tests appears to confirm potential autism. 

For a little while now I've considered myself self diagnosed autistic but I've realised that I will continue to have the internal dialogue of am I aren't I for the rest of my life until I speak with somebody about it - hence the appointment.

I've not been diagnosed with any mental health issues. Probably because I've manufactured a safe space all of my life. So that lack concerns me as I notice that mental health issues are common in the autistic community.

 I've spent the last year analysing my life and situations I find myself in and autism explains my struggles. I'm just afraid that after 62 years of hiding I might be my own worst enemy. I also struggle a great deal with putting my thoughts and feelings into words as I've spent a lifetime just keeping everything under wraps so I'm scared I won't be able to explain what's inside my head to my assessor.

I'm really scared that I will be told that I'm absolutely not autistic. 

I think I might share my appointment date with my daughter but I'm scared of being outed as an imposter when the time comes. 

Im not quite sure why I'm telling you all this. Thank you for being a safe space where I can share my worries. 

Much love

Inula 

Parents

  • Hello Tribe

    Just a quick update to my original post.

    I had my assesment earlier this week and it went well. I was even brave enough to tell my daughter and a few other people about it beforehand. This is very unusual for me as I rarely share.

    I really struggled to mask (which is a good thing!) because I was completely stressed out and overwhelmed by the process. My normal coping strategies failed me and I felt like I was a bit of a wreck. I'm not looking forward to my report when it arrives however I met the criteria for a formal diagnosis which will be a week tomorrow. 

    For the first couple of days after my meeting I was in a bit of a state as I've started to pick away and things that didn't make sense but now do. I've shed tears for the kid I was. The one who was lost and didn't fit in. I shed tears for a random kid at my granddaughter's sports day. She reminded me of me. I've shed tears for the life I could have had but didn't get because of my struggles. I've been very exhausted this week and have been napping quite a lot. It's hard work processing all this new information. 

    I thought I would be ok to remain self diagnosed but I needed validation. (Ohh my goodness - imposter syndrome is so difficult)

    I'm very happy to know that there's a reason why I've struggled. Thank goodness for the internet. For the wealth of information out there and the availability of vlogs and forums so we can all know we aren't alone. 

  • in reply to Inula

    Very pleased for you, Inula!

    I was diagnosed last month. I first suspected 17 years ago when my son was diagnosed as a toddler but I had been told over and over by "professionals" that I wasn't and had I considered that his dad probably was, etc. I'm still angry about that as I had a mental health crisis a few years ago from burnout and the pain of that, and the impact on my family, could have been avoided. I feel validated and peaceful for the first time in my life. 

    I've been sleeping a lot too. I feel like I have permission now to feel everything I've been holding in and had been telling myself was me being bad at coping, judging myself against something I can never be. The grief is real. It gets easier. Overwhelmingly it's positive with odd moments of tears and regrets. 

  • in reply to This Person (Ottilie)

    Thank you Ottilie :)

    I'm pleased too!

    My younger sister congratulated me when I told her (she was diagnosed in her 40s) and I thought - yes - congratulations are in order. 

    It's sad that you could have been diagnosed earlier but we're dismissed. It's a relief to finally get to the truth, isn't it? Knowing yourself earlier would have been helpful. That's why I went down the private route and not the NHS route. As part of my assessment we explored other family members who might be undiagnosed. Looks like I'm from a long line of neurodivergent folks :) 

    Today I feel calm and at peace with myself. Hopefully I won't have too many turbulent days but knowing me they will pass. My daughter's best advice to me has been to rest and be kind to myself. She is a wise lady! 

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  • in reply to This Person (Ottilie)

    Thank you Ottilie :)

    I'm pleased too!

    My younger sister congratulated me when I told her (she was diagnosed in her 40s) and I thought - yes - congratulations are in order. 

    It's sad that you could have been diagnosed earlier but we're dismissed. It's a relief to finally get to the truth, isn't it? Knowing yourself earlier would have been helpful. That's why I went down the private route and not the NHS route. As part of my assessment we explored other family members who might be undiagnosed. Looks like I'm from a long line of neurodivergent folks :) 

    Today I feel calm and at peace with myself. Hopefully I won't have too many turbulent days but knowing me they will pass. My daughter's best advice to me has been to rest and be kind to myself. She is a wise lady! 

Children