What have you achieved from getting diagnosed?

I was diagnosed with ASD (Aspergers) in December of last year and the last week or so have been feeling a bit despondent about it. I spent a few years prior to assessment and diagnosis focused on analysing my life and getting the diagnosis, like somehow getting a diagnosis would ‘fix’ me. Since diagnosis I’ve thrown myself into ‘being autistic’ and I spend a lot of time socialising with other autistic people which works well actually. But I can’t help feeling that I haven’t really achieved anything by getting a diagnosis, it might explain why I am the way I am but it doesn’t change anything, it doesn’t change me, it doesn’t make me any less weird! I’m just the same person that I’ve always been, life carries on regardless!

So I just wondered, what do other people think that they have achieved from getting a diagnosis?

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  • As has been mentioned further up the thread it's the 'now what?' feeling... like when you're driving and you get sent into a diversion and there are signs all along the way then you get 'Diversion ends' but you're not back on the road you were on before you got diverted...

    It's left to informal groups to form and support each other plus people like Agony Autie to share their experiences.

    I feel like late-diagnosed autistic adults need more support than early-diagnosed kids in a way. We've got so many more pressures on us - work, family, lack of work, isolation, substance abuse... plus we've got the mask and the self-knowledge of being 'wrong' (I use that word deliberately to reflect how I think most of us feel pre-diagnosis)...

    My psychologist has mentioned Acceptance & Commitment Therapy which has a basis in suggesting the underlying issue in many cases is 'experiential avoidance':

    "attempts to avoid thoughts, feelings, memories, physical sensations, and other internal experiences—even when doing so creates harm in the long-run."

    That has been a mind-blower for me... I always thought I was good at coping with stuff 'cos I didn't get upset when all around me were crumbling - turns out I'm terrible at it, I've just got a box full of demons that's bulging at the seems and every time I try and stuff a new one in it there's a real risk that some/all the others with make a bid for freedom, which means I can get overwhelmed...

  • Or when you’re following the diversion signs and suddenly they stop without warning! At which point I’m usually convinced that a mischievous person has moved them on purpose to confuse unsuspecting drivers! This actually happened to me once and I ended up miles from my intended route and had to try to navigate my way back! That’s a little bit how I feel post diagnosis, I’ve gone off down a different route to the one that I expected to be on.

    I started my own group for autistic women in my local area following my diagnosis at the end of last year and it’s going well. I also go to the social group of the autism group in the next town up. So I have a network of other autistic people that I meet up with quite regularly. I’ve chatted with a few other autistic friends since I started this thread and I’m feeling a bit more ‘on track’ now than I was. 

    Yeah we’re too far down the route of trying to live as ‘normal’ a life as possible to be able to start from scratch and make all life decisions from the perspective of being autistic. We still need to work, our children still need looking after. Life carries on regardless. It’s more a case of adapting how we do certain things, to allow us to take care of ourselves better, but within certain limits. I had believed that there was something ‘wrong’ with me since I was 17. At least now I know that I’m not ‘wrong’ just different.

    What you say about acceptance and commitment therapy is intriguing! I’m also a coper, I pride myself on being mentally strong. Anyone that knows me well tells me I’m so strong and I do so well to cope with so much. BUT is it healthy to plough through every emotionally challenging situation like a bionic woman? Is is healthy to expose myself to emotional pain with the mind set that it doesn’t matter as I’ve been through worse so I can get through it? I would imagine that I too have a box full of demons that have never been acknowledged or dealt with and I worry that they might escape at some point in the future!

  • Yeah... except I think that although we 'expose' ourselves to emotional pain we don't allow ourselves to 'feel' it...

    Because we feel things too much...

    So we protect ourselves by not allowing ourselves to feel at all...

    And get a reputation for being 'strong', which ends up being a trap because we can't let people down.

    Someone once said to my brother (undiagnosed, but quite possibly also ASD) "I don't know how you cope with everything", his response? "I didn't realise I had a choice..."

    He ended up getting treated for PTSD due to what he'd been 'coping' with...

    Human beings need to feel, autistics need to learn to how to feel in a way that doesn't destroy us - feelings are like flames, you need to be able to get close enough to feel the heat but without getting burned...

  • <laughs maniacally>

    Because the UK is NOT READY for no deal... we started too late, don't understand what we need to do, are not working 'joined up' etc. etc. etc. 

    Trust me, I'm on the inside of the UK.GOV preparations and it's absolute chaos.

  • Why would it?    there's far too many big, powerful people involved to risk anything going disastrously wrong.    It's all fiddled and fixed anyway - our politics has become a poor pantomime for the consumption of the unthinking masses - just look at the way Cameron handled a leave vote after promising to immediately lead us out of Europe.    The rest has just been making noises for the plebs to suck up..

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  • Why would it?    there's far too many big, powerful people involved to risk anything going disastrously wrong.    It's all fiddled and fixed anyway - our politics has become a poor pantomime for the consumption of the unthinking masses - just look at the way Cameron handled a leave vote after promising to immediately lead us out of Europe.    The rest has just been making noises for the plebs to suck up..

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