Newly diagnosed adult female Newcastle 38 years old

Hello, 

I was diagnosed yesterday. Today I have been thinking about things that have happened to me or that I have done in the new knowledge of my diagnosis. It's very odd. I was surprised to be diagnosed. I asked if I was borderline but they looked horrified and said that I was 100%, no doubt classic autism. 

I'd like to say hello to people on here. Hello.

  • Hello

    sort of my story too when I was diagnosed last year when I was 45. I am 47 now.  I tried to ask at a later session whether I was like fully or severe ... and was told that misleading because am 100% in itself.  Mine is 2/3'ds autism with PDD-NOS. The book says not a helpful diagnosis. But I say it is because it allowed me the help. With their agreement I can just say Autism and people understand that there are times I need extra help with things. I have my own style meltdowns at times.  I too looked back at life and wondered how things gone wrong and now got some answers.  Things has vastly improved for me since the diagnosis. Yes I still get angry and upset but people around me know and take time out to help me rather than glare at me for walking off. I can't always help myself but when it like that people try to help me without being judgemental. 

  • Hello, welcome to the forum,

    You are not alone in finding your diagnosis surprising!  I was diagnosed only a few weeks ago (45 years old) - and like you was quite stunned to find that I am way, way over the "borderline" (Asperger's and alexithymia in my case).

    Already, the wisdom and advice of other here who also made their big discovery relatively late in life has helped me enormously as I "review" my life in light of diagnosis.  I hope you find the same.

    Best wishes. 

  • Thank you for your helpful replies. I am pretty excited to start living life in my own way rather than trying to fit in. Happier times ahead hopefully :)

  • piggy77 said:

     I am pretty excited to start living life in my own way rather than trying to fit in.

    That really hit home you saying the above. I feel I am so used to doing what others expect of me that I never have much energy to do my own projects. I have spent all my life trying to avoid comments or avoid doing things the wrong way.

    I was diagnosed this January and part of me was relieved that I have an excuse for feeling the way I do. But another part of me also feels it must be a mistake, that it is just very very mild, that I just need to pull myself together stop procrastinating and just get on with life. That it can't be that serious, it's just me being oversensitive and lazy.

    The lady testing me, told me that people who mask it and who compensate the most often suffer more than people with people with ASD who don't try to fit in socially. So that "mild" autism does not mean the suffering is mild. It just means that that you can look after yourself.

    My question would be: how do you start doing things your own way - and to hell with what people think?? All my social life seems to revolve around a) doing what people expect b) avoiding criticism c)being the clown people like to laugh at d) being excessively kind, trying to please and caring and probably unusual for autism: I'm good at listening, apparently have good empathy (but of a rational/mirrored kind) and people love telling me their problems (which leaves me exhausted emotionally, and sometimes depresses me).

    I also feel it is me who gives all the time, but I don't get much back from others. I often feel lonely. If I say to hell with all trying to fit in, won't that leave me even more lonely???

    Is it possible to rethink yourself at 43?

  • Procrastinator your reply has really resonated with me. The fact is that I don't know how you live life on your own terms but I intend to find out!

    It's been one week since my diagnosis and I have actually had to ask my Husband if it really happened. People keep telling me I must be very high functioning or perhaps I misunderstood my diagnosis. My family don't believe it/don't care. I keep worrying that I have been diagnosed in error. This is a fear of mine. I know in fact that the specialists were very thorough. 

    I don't really know where to start with trying to live life on my own terms. I have started small by being really honest and open about my diagnosis. I am allowing myself to look people in the eye less as I find eye contact uncomfortable. 

    I am going to move on from these things to bigger things once I have gained a bit of confidence. I don't think it's a case of going from A to Z. I think you need to build up slowly. I think if I treat myself with respect then other people will too. I sometimes feel lonely because there is such a gap between how I want my life to be and how it is. I'm not being honest with myself or other people. Eventually I want to be less lonely because I'm more myself. Does that make sense? 

  • Piggy77, I'm so sorry about your family's reaction :-( it is interesting that people try to minimise your diagnosis, even though your diagnosis with classic autism is very solid. Maybe they are trying to tell you they think you are okay in their eyes? Obviously they have no idea about the stresses and strains you face in your every day life. And that it might be useful to you to get recognition for your years of struggling?

    I like your idea of treating yourself with respect. I am often horrible to myself, because I never meet my expectations. Quite the opposite, I feel like I have messed up my life and any chance of finding happiness in the shape of family life or a fulfilling career.

    Becoming more oneself...Yes. I'm trying to get my head around these new thoughts. It kind of makes sense. For example, I have never found a partner - but maybe it was because I never was truly myself. This is rather a sad thought. A world of missed opportunity. The good side is: the more one is oneself maybe the more one attracts people who love you for who you are (but my experience as a child and teenager was one of being a carcass thrown to the vultures - I do not wish to put myself in that position ever again).


    It is strange that you too and others above feel that the diagnosis may be an error. Me too. So much. I wonder: "What if I had filled in other answers to some of the questions I wasn't quite sure about?" (you know those questions tick A or B and neither made sense).

    The thing is of course: it wasn't even my idea to get referred in the first place and even though it was suggested a while ago, I still feel I'm getting used to the idea. I feel asperger is what geeky computer specialists have - and as I can behave kind of "normal" - I somehow don't feel entitled to the excuse.

    It really makes sense what you say. Being true to yourself... it is probably the most beautiful gift we can give ourselves.

    I think that an important part for me will be acccepting the fact that stupid things stress me out. That I expect too much of myself. That I need to be assertive in drawing my boundaries.  And that it is okay to accept help (and need to start figuring out what kind of help I need).

    I have also started telling friends about boundaries and limits (even though I am hesitant about telling them about my diagnosis - they think I just have a burnout, or am depressed or just maybe crazy/lazy/not working/scrounging benefits). Saying for instance: I will meet up for two hours. Also I realise like if I have an evening with friends - if I stay to long I have an emotional hangover - and feel terrible all next day - but if I limit the time and leave early (even if I am enjoying the company) I feel better the next day. Also not combining too many stressful events in one day.

    I'll hold onto to the "treat yourself with respect idea". Maybe fully embracing and accepting our diagnosis, is the first step to being nice to ourselves?

  • Hello, 

    Sorry for the very late reply. I haven't been able to log in to the site.

    Procrastinator it sounds like you had to fill out a questionnaire as part of your diagnosis. Is that correct? I just had a two hour interview with two doctors. I didn't complete any tests. 

    My family aren't interested because they aren't interested in me generally. They only ever cared about my appearance and making sure one day someone would want to marry me. I rebelled and married eventually for love. I found someone who I could fully be myself with. I would like you to meet someone one day who you could be yourself with too :)

    I have spent all of my life doing the opposite of what I wanted to do which is what was drilled into me as a small child as my Mum said shy, unsociable people don't get on in life. I work in a shop which I find awkward and I manage a minimal social life which exhausts me. I don't quite do exactly what I want to yet but I'm slowly getting my head around the fact that it's okay to do so. I'm not sure I'll ever get there but I will keep trying. The doctors said that my Mum did what she thought was best but they urged me to live my life as I want to from now on. I do social things even though I don't want to as on some level I feel it's important.

    I feel my life has been a complete train wreck (a mess) I am embarrassed to think back on all the things I have done and not done just to fit in. 

  • Hello, 

    Sorry for the very late reply. I haven't been able to log in to the site.

    Procrastinator it sounds like you had to fill out a questionnaire as part of your diagnosis. Is that correct? I just had a two hour interview with two doctors. I didn't complete any tests. 

    My family aren't interested because they aren't interested in me generally. They only ever cared about my appearance and making sure one day someone would want to marry me. I rebelled and married eventually for love. I found someone who I could fully be myself with. I would like you to meet someone one day who you could be yourself with too :)

    I have spent all of my life doing the opposite of what I wanted to do which is what was drilled into me as a small child as my Mum said shy, unsociable people don't get on in life. I work in a shop which I find awkward and I manage a minimal social life which exhausts me. I don't quite do exactly what I want to yet but I'm slowly getting my head around the fact that it's okay to do so. I'm not sure I'll ever get there but I will keep trying. The doctors said that my Mum did what she thought was best but they urged me to live my life as I want to from now on. I do social things even though I don't want to as on some level I feel it's important.

    I feel my life has been a complete train wreck (a mess) I am embarrassed to think back on all the things I have done and not done just to fit in. 

  • Procrastinator who suggested that you got diagnosed? I chose to myself even though I had been pretty sure for the last ten years that I was autistic.

    Your experience of social events is exactly the same as mine. For the last year I have limited them to two hours as I can't stand any more. I don't have people in my house as I can't control when they leave. Stupid things stress me out too but I am slowly getting my head around accepting this. My Husband accepted this year's ago and I am trying to too. Sometimes I get the wrong train home (the train I get every day twice a day) and get lost and cry. My Husband long ago accepted that he comes to collect me or stays on the phone and gives me clear directions home. When people query my diagnosis I think about this and laugh inside. People I work with would be shocked if they knew what my life is like away from work. 

    I've only been officially diagnosed a few weeks but I am boundary setting every day. It's a great feeling to tell people what I will and won't accept/do. If only I could have done this 39 years ago! Maybe I could have lived the life I wanted, one I could be proud of. I wish you luck with your journey and I hope you receive everything you want in your life xx

  • Procrastinator who suggested that you got diagnosed? I chose to myself even though I had been pretty sure for the last ten years that I was autistic.

    Your experience of social events is exactly the same as mine. For the last year I have limited them to two hours as I can't stand any more. I don't have people in my house as I can't control when they leave. Stupid things stress me out too but I am slowly getting my head around accepting this. My Husband accepted this year's ago and I am trying to too. Sometimes I get the wrong train home (the train I get every day twice a day) and get lost and cry. My Husband long ago accepted that he comes to collect me or stays on the phone and gives me clear directions home. When people query my diagnosis I think about this and laugh inside. People I work with would be shocked if they knew what my life is like away from work. 

    I've only been officially diagnosed a few weeks but I am boundary setting every day. It's a great feeling to tell people what I will and won't accept/do. If only I could have done this 39 years ago! Maybe I could have lived the life I wanted, one I could be proud of. I wish you luck with your journey and I hope you receive everything you want in your life xx