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Monday, 15 July 2013

Aspergers and forging a new way forward



So, today Ethan and I had our last follow-up session with the specialist who diagnosed his Aspergers. The sessions were designed to help with the fall-out from the Aspergers diagnosis - to rant, moan, attack, grieve, wish-out-loud, resent and vent before hopefully reaching a point where we can start to see a way forward and begin talking instead about adapting, changing, accepting, relenting, agreeing, challenging, building up and carving out a new kind of relationship and a new kind of reality.
We talked about how I want to shout from the rooftops that Ethan
has Aspergers because I feel it excuses, or at least explains, so much. I feel less on edge around people that know about Ethan's Aspergers, less nervous about what he might say and how he might be received. It feels safer that, should Ethan slip up, he - and by association I - have an 'excuse'. Ethan, on the other hand, wants to keep his 'status' hidden from all but a select few friends and family. For the first time today I heard him speak touchingly, openly and honestly about why...
He spoke about the vulnerability of people knowing. Of the lifetime of hard graft he's had 'pretending to be normal' - just for that to be destroyed in seconds by admitting to people that he's not 'normal' after all. He spoke about the awkwardness of his cover being blown and people knowing that he's pretending to be normal - which defeats the object of pretending in the first place.
I think, for himself, he needs to have a reason to keep on striving to fit in. Perhaps he feels that if everyone knows, it'll be an excuse to sink into his Aspergers. Something that we both want to avoid.
By the end of today's session, I felt we could forge a way forward - if the commitment remains in us both. If we both continue to try to understand each other more. If we keep sight of each other's good points, if we communicate more and pray a lot! And, crucially for me if I'm really honest with myself, to care less about what other people think.
What choice do we have but to keep on keeping on? We've got three kids. And we've got a relationship worth working on.
So change it is.

4 comments:

  1. so i'm not going mad and its not just all inside my head,,,,,, my big question is how did you get to a diagnosis and then to professional help... who instigated it and made it happen?

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  2. Hi nbs,
    I spent many years knowing that Ethan had issues and wondering whether they might be Aspergers. Every time I read an article about Aspergers, the symptoms and behaviours seemed to fit my husband perfectly.
    But I guess I wasn't sure where to go with this information - it all felt too huge and too overwhelming and I just didn't know what to do about it or how to deal with it. I also guess, at the time, I didn't feel up to facing what it might mean.
    We muddled along for a quite a few years with me getting more and more resentful and him retreating more and more as I detached myself from him (for self-protection and because he just wasn't nice to be around). All of this, along with the Aspergers led to depression and, ultimately, a problem with Aspergers for Ethan. I write a bit about it in my latest blog entry.
    Basically, as a result of things really blowing up in our faces, in terms of Ethan's behaviour, he sought counselling (cognitive behavour therapy) and, thankfully the lady he went to for that spotted Aspergers instantly. She referred Ethan to the GP and the GP referred him to an Aspergers diagnostic specialist who confirmed the diagnosis and offered some counselling sessions for us both.
    I must say, although hard to deal with, Ethan's diagnosis has made life, and our relationship easier as we have something to work with now, as well as access to support.
    I would say though, that diagnosis depends on your partner's willingness to address the issues s/he faces and go and see the doctor. The doctor should be able to refer him on to the right person from there.
    Hope that helps.

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    Replies
    1. hi
      Thank you for sharing your story... I guess I'm at the muddling it along stage... it has only really come to my attention because I have started to work with kids with special needs and the more I learn the more OMG moments I am having... I just thought that "we" were odd. But we have known each other since our early teens so I don't know anything different......

      I fight the feelings of loss, grief and "its not fair" daily as I think I am the only one to have had this realisation and can't share it with anyone. I know that I am retreating and can see what effect that is having. I am not really sure where we are headed.....
      I'll keep reading your blog and see where your path leads you.

      Thank you for sharing
      nbs

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  3. Hey both... Wanted to put my penny's worth on this.

    I work with people and families affected by Asp. I didn't notice any signs in my partner until after quite a while - he had been diagnoses with depression and told me about it so I initially thought that's what it was. But he is ok with his mood now - my educated guess is that it was just an end symptom of years of struggling through and not knowing why he found life so hard.

    I spoke to my partner about whether he might have Asp. He looked into it and recognises some of the symptoms but he does not think it is 'as bad'. The stories and descriptions online can be extreme - and I agree he is not like that.

    Yet, he has the core communication and interaction problems of Asp - together with the co-ordination, planning etc issues.

    I have no intention of pushing the diagnosis. I now think he is better without one. There is no tablet for it, all the changes need to be in his environment and slowly him learning strategies that help him manage and feel happy.

    I know a lot of people find diagnosis helpful and I am in no way against it. I am just saying that it is still the stuff that you figure out in day to day life that will make the difference though...

    I have also found that a lot of it has been what many people have to do - figuring out your talents and weaknesses, learning to communicate better, managing your feelings, developing your confidence so that you don't feel like the weird one who can't do the stuff... For sure there are challenges. Asp or no asp.

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