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Damned if you do.......damned if you don't

JDW

Hi,

As someone who has been recently diagnosed with Asperger's Syndrome and who has subsequently recieved answers to a great many questions as a result I would like to know how other people with AS status cope long term. I am finding that whilst the diagnosis has been welcome very little in life has changed for me and I feel as isolated and misunderstood as I have always felt. My partner who tries to understand is often the reason for my anxiety, she may be the centre of my universe her apparent intolerence is often a source of stress for me.

I find if I withdraw from conversations my wife complains and when I try and often fail to engage in conversation I am accused of being rude or insensitive. I find my partners inconsistent approach to the rules of the house and the way she expects me to just cope with it is provong very taxing. It is very difficult as she is very understanding in so many ways but I guess her resentment of my condition runs deep.

My preferred approach is to withdraw from conversation completley, I can happily go hours even days without talking to anyone so pitching in to conversations often fills me with dread. I usually say something deemed inappropriate or more than likely insensitive. 

Does anyone feel that trying to esatblish a identity for yourself as someone with autism is important. I do not want to let my AS limit or define who I am but believe firmly that I should respect it and acknowledge it is a big part of who I am and as such should be recognised. I only wish others would recognise it too.

Thank you

Parents

  • I find your description of NT family members behaviour very familiar. There is often a real inconsistency.

    I have tried to tape as many TV programmes about people with ASDs as I can and show them to my family. Unfortunately most of them are about kids, and these kids have had an early diagnosis and so seem a lot more open and relaxed than adults who have had a late diagnosis. I have also tried to get them to read books, such as "The Complete Guide to Aspergers Syndrome". My main problem was to get them to understand that an ASD is not a mental health issue which can be solved and "controlled". Instead my behaviour is ME, and if I can't be ME then I will really suffer, as working hard to be like an NT is very very tiring mentally.

    I embrace being a person with an ASD. If someone says you are being insensitive, ask them why it is, so that you can learn and not repeat the insensitivity (if there is one, sometimes there isn't). If they know you have an ASD I think this is an OK thing to ask, especially within a family. I have found this to work, and over time it has made a difference as there are far fewer misunderstandings because it has become a way of understanding each other.

    I realise this might not work for everyone.

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  • I find your description of NT family members behaviour very familiar. There is often a real inconsistency.

    I have tried to tape as many TV programmes about people with ASDs as I can and show them to my family. Unfortunately most of them are about kids, and these kids have had an early diagnosis and so seem a lot more open and relaxed than adults who have had a late diagnosis. I have also tried to get them to read books, such as "The Complete Guide to Aspergers Syndrome". My main problem was to get them to understand that an ASD is not a mental health issue which can be solved and "controlled". Instead my behaviour is ME, and if I can't be ME then I will really suffer, as working hard to be like an NT is very very tiring mentally.

    I embrace being a person with an ASD. If someone says you are being insensitive, ask them why it is, so that you can learn and not repeat the insensitivity (if there is one, sometimes there isn't). If they know you have an ASD I think this is an OK thing to ask, especially within a family. I have found this to work, and over time it has made a difference as there are far fewer misunderstandings because it has become a way of understanding each other.

    I realise this might not work for everyone.

Children
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