Late diagnosis.

Hi. I’m not very good at this. 
I was diagnosed last week in my late 50s and after going through a long process. I’m not sure what to do now. I’m confused and feel my life up until now has been an act. I am married and have been for 30 years. I have told 5 people only and so far they’ve not changed toward to me which is good but the closest ones have just said to carry on as “normal”. My GP is still waiting on the notes too so I’ve not had any offer of any support as of yet, if you get any that is. I can feel myself getting even more withdrawn than normal as I simply don’t mix at all. My husband is my friend and he is the only one I see daily. My head feels like it’s full of words swirling around but I can’t land in any to say how I feel. It’s like cotton wool. 
What do we do after diagnosis. I don’t work as it all got too much a few years ago. I also have fibro. Do I just carry on or what…I’m feeling very confused but the diagnosis also answers my difficulties too. Not sure this makes sense. 

Parents
  • Thanks for sharing your thoughts and experience. I’m going through diagnosis at the moment at the age of 54 and having been married for 30 years. It’s very much as if my world has been stood on end. Trying to work out which parts of my life was actually me or my fake is hard. I think I mentioned to someone before that it’s like you are trying to navigate all of this with a non existent instruction manual. My wife is very supportive, but she is learning as I am. She is an nhs nurse with 15 years on the clock. She has told me that her autism training might have been 10 minutes on one morning out of 3 years training. It’s not surprising that there is still very little understanding in world. Love your user name, I have a 1966 Bedford CA camper. She is known as Betsy the Bedford!

  • Hi Roy. You are so right…..it does feel like your world is upended. I was a nurse also and didn’t recognise myself as having ASD. It was only about 3 years ago we were watching something on television and my husband recognised me in one of the people and himself in the partner. It has taken since then (and through Covid) to get my diagnosis. I’m trying to find out coping strategies just now but sitting at peace and doing research is not a strong point.

    oh I’d love to see pictures of your van, it’s one of my things…love campervans or motorhomes and extensively research them when I can keep focus. Ours is like a little bit if home so makes getting away easier on me. Luckily my husband loves it too. My icon is of an image that’s on the side of ours as I love Icelandic and Norse lore too. 

  • Hi, I’ve been with my wife for 35 years in total  and she never picked up on my condition. What I have done is cut down on work and start to be nicer to myself. 50 plus years of so many situations when things just went wrong and I didn’t know why, I always knew that I was different but just couldn’t work out what it was. I’ve put my wife and children through hell over the years with my meltdowns and shutdowns. It’s a long process to try and process all the things that I thought were my fault and memories are still surfacing. I did the same as you and was actually listening to someone on the radio who has been late diagnosed. It was like listening to my life. It’s that moment when you realise that you aren’t mad or bad, there actually is a reason why you have always been looking in from the outside. I find a big help now is not putting myself in situations that cause stress and planning a day better. This is Betsy, she makes me smile when I’m out in her and often cheers others up.

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  • Hi, I’ve been with my wife for 35 years in total  and she never picked up on my condition. What I have done is cut down on work and start to be nicer to myself. 50 plus years of so many situations when things just went wrong and I didn’t know why, I always knew that I was different but just couldn’t work out what it was. I’ve put my wife and children through hell over the years with my meltdowns and shutdowns. It’s a long process to try and process all the things that I thought were my fault and memories are still surfacing. I did the same as you and was actually listening to someone on the radio who has been late diagnosed. It was like listening to my life. It’s that moment when you realise that you aren’t mad or bad, there actually is a reason why you have always been looking in from the outside. I find a big help now is not putting myself in situations that cause stress and planning a day better. This is Betsy, she makes me smile when I’m out in her and often cheers others up.

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