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?

Parents
  • 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!

Reply
  • 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!

Children
  • <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..

  • I can't avoid it - I'm working on a project to hopefully stop everything turning to *** in the even of a no-deal Brexit...

  • I haven't watched the news or read a newspaper for years, the news is depressing and as you said nothing I do will make a difference to any outcomes. Traffic news is much more relevant and current!

  • I'm finding ways to relax my mind - the best move has been to ignore all current news - I simply don't care any more - nothing I can do is going to make any difference to any outcomes so I'd rather not know or stress over it.     I've not seen ANY news since February - I hear Boris is doing something but I don't care.    I'm only interested in local traffic news if I have to go somewhere.  

    Ignorance really is bliss.  Smiley

  • Yeah I have often thought that I may also have Alexithymia, I think it's very common in autistic people.

    I up the housework levels if I'm stressed. The more stressed I am, the cleaner my house is!

    You're right, we build walls around ourselves to protect us from a hostile environment that our brains struggle to comprehend.

    I also view anger as useful. If I have to feel then I would rather feel anger as opposed to sadness as anger makes me get productive and yeah as you said, it's a fuel to get me through difficult experiences.

    I can't help but wonder the damage that this does to us?

  • This is all so familiar...

    The whole not feeling/not recognising emotions sounds like Alexithymia - it seems a common co-morbidity but I never thought it applied to me until now.

    For me, I start to up the exercise levels as the un-dealt with emotions build up. I once said to my psychologist that the cruellest thing someone could do to me was to make me feel...

    We don't just wear masks, we have thick armour that's really a survival suit even though it leaves us isolated and numbed.

    For years about the only emotion I felt was anger as it seemed 'useful' as a defence mechanism and also 'fuel' to get me through tough experiences.

  • I think sometimes I am aware that I am experiencing emotional pain but just try to ignore it and carry on regardless OR a large percentage of the time I don’t feel anything in response to situations or experiences that I ‘should’ feel something about. Quite simply I do not receive emotional data about situations even though logic tells me that I should. I have learned however, that just because I don’t receive the emotional data to tell me that an experience is affecting me, this doesn’t mean that it doesn’t affect me and that effort can be shown months later by changes in behaviour such as starting drinking heavily most nights a week and starting smoking again. Now that I realise that, I’m better at pre-empting disfunctional behavioural responses and stopping them before they start. I still don’t know how to deal with the initial experiences though. The ones that logically I should feel a response to yet I feel nothing. Yet I know that they probably have had an effect on me on some level.

    I was talking about this with an autistic friend of mine the other day and she gets the same thing. I imagine that I probably have underlying multiple amounts of PTSD from a large variety of incidents over the years. Stuff that I probably need to deal with at some point! 

    I also do not perceive that I have a choice to cope or not! Not coping isn’t an option!

    I don’t like feelings! Maybe that’s part of my problem! I got burnt so I learned to build a very thick shell! One that will not be taken away from me without a struggle! I can be an absolute ice queen when I have to be and I prefer it that way!

  • 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...