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“I was finally diagnosed as autistic, via a long awaited assessment. It was done virtually… I’m in my mid thirties, and I feel grief that I went so long without this understanding of myself.”

Human Bean‘s #MadCovidDiaries 13.12.2020

The good side of my personal circumstances at the moment: my partner is able to teach from home for a little while, my kids are off school and nursery. We can hunker down for a while and be relatively safe. I’m really grateful for that, and for this time together. I’m doing home learning with my four year old and it isn’t easy, but at least I don’t have a job so I’m not trying to fit my own work in as well (just entertaining a two year old at the same time!).

The kids’ birthdays are coming up. My four year old wants a traditional kids’ birthday party, so we’ll try to create one at home, just the four of us. My heart breaks for her. We couldn’t have one last year either as I was (physically) ill – I had told her “next year, sweetheart” and now next year is here and it can’t happen. 

I’ve found my creativity again, which is usually a sign that my mood is not bad. I’ve been embroidering and cross-stitching and crocheting. My anxiety is quite high at the moment though – I still wake up sweating and breathless after nightmares. 

The other major thing that happened is that I was finally diagnosed as autistic, via a long awaited assessment just before Christmas. It was done virtually, with two assessors. I found it very gruelling and stressful, it took over three hours. I’m in my mid thirties, and I feel grief that I went so long without this understanding of myself. I’m battling a sense of imposter syndrome (like I somehow convinced them I’m autistic but I’m not really?) and I have a lot of processing and work to do to understand my past in light of this information and how this has interacted with my mental health issues all my life.

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2 thoughts on ““I was finally diagnosed as autistic, via a long awaited assessment. It was done virtually… I’m in my mid thirties, and I feel grief that I went so long without this understanding of myself.”

  1. I know the feelings of grief and imposter syndrome you describe. I was recently diagnosed in my mid forties and I had to get it done privately. If it had have been left up to the NHS I would have still been simply labelled as ‘depressed’ as they had done since I was in my late teens.

    I gather yours was done by the NHS as well, judging from the fact it was 3 hours long. It doesn’t take any sort of specialist to realise that three hours of anything can be stressful and grueling, but particularly if there’s any mental health problems involved and especially if there’s suspected autism.

    My take on the feeling of imposter syndrome is that I think it comes from the fact that you probably, like me, have known in some way that something was wrong for a long time, but for some reason have never been listened to by any professional. So your life has felt like a constant battle and now it’s happened it kind of feels too easy. Or possibly there are now other mental health issues that have happened due to the fact you’ve been struggling through life all this time without help, possibly trying very hard to get help. So things like (Complex) PTSD, signs of personality disorders and of course the depression that came from no doubt blaming yourself all this time for being ‘weak’ at finding life so very difficult.

    It’s also possible you had an emotionally neglectful upbringing, possibly because your parents were also undiagnosed, and therefore didn’t recognise your issues as they were “normal” to them, or they just weren’t good parents – otherwise they would have noticed the problems and gotten help or advice.

    The grief? Well, that’s from all everything I’ve written above – the suffering, the trying, the being ignored – for decades. All because there just wasn’t one person who cared enough to notice, listen or help.

    I’m sincerely glad you’ve got this in your mid-thirties and while your family are young. Understanding what’s wrong, not blaming yourself and having a simple word to describe your complex issues to other people is a Godsend. I would just advise you not to ignore any other issues that have undoubtedly had an effect on your mental well-being from being misdiagnosed all this time. And do not rely on any NHS mental health worker for this. No matter how difficult it is, save up for private professional help. NHS mental health is more harmful than anything as can be evidenced just by the simple fact of them conducting such an awful assessment.

    Good luck. All the best.


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