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This is all new to me

Barneymoane

Hi guys, I feel a bit lost…

my diagnosis hasn’t come as a surprise, but it’s definitely come with some weight. I have been always known since primary school that my only difficulty was not just Dyslexia. My struggles stretched further than just academic, it was my social life and they was things made me feel. After suffering with crippling anxiety and depression for the past 8 years and just always putting it down to life’s struggles and traumas, the diagnosis has shone some more light on why I have been struggling like this. 
I was diagnosed Friday just gone (29.08.25) and since then I’ve been really struggling to pull together, feeling very down and burnt out. It’s just going around and around in my head that I wish I knew earlier as I believe It could have helped me navigate the past decade, and understand my feelings and emotions. 

im really not sure what kind of advice/responses I am looking for as I don’t even know where to start. But please share your adult diagnosis story’s and how it made you feel, help me feel like I’m not the only one that felt lost at the beginning. 

Parents

  • Hi   - great choice of name :-)

    some great advice already from  and   - hehe get ready for an avalanche of more probably as most people I have encountered on this site are really keen to help and also prone to what autistically I believe is called an "infodump"....

    In respect of the just diagnosed bit I personally experienced an increase in self-doubt after diagnosis and I was pretty full of it before.

    Can say that this has reduced a bit however a lot of the "fun and games" (they really aren't) I personally experience are about coming to terms oneself with being autistic and then the potentially bigger problem of the neurotypical world coming to terms with it.

    I found having a look at "The double empathy problem" and the neurodiversity paradigm when ready tot be insightful.

    All that stuff going around and around in your head I can relate to.  I have come to recognise that this is "perseveration".

    I think of it as being the evil twin to perseverance.  :-)

    "Perseveration, as being stuck and unable to move on can be triggered by feelings of being overwhelmed or anxious, and it is a core feature of autistic repetitive behaviors.  Autistic repetitive behaviours itself a core feature for autism diagnosis.
    Perseveration is kind of a side effect of the stress and anxiety and personally I recognise now that when I'm doing it I'm overwhelmed and anxious.  It may seem daft to have to have a work around to having that sort of insight about oneself however, suffice to say, it "goes with the territory" if you know what I mean?  I came across "alexithymia" as a term worth understanding early on post diagnosis.
    Best recourse I find now is to find a means of reducing anxiety to get rid of it.  Agreed this can be tricky as the stuff going around in the head may be the things considered necessary to get sorted before you can be less overewhelmed or anxious - at least that's what I find.
    As regards what to do to get less anxious - well "whatever rows your own personal boat" is what seems to be best.
    The only thing that I would suggest that I have to be quite careful about is that it is very persuasive to exclude oneself from a whole lot of stuff to do so and having a fall back plan or two can be useful.  Don't get me wrong "doing something by not doing something" can be a great way of relaxing and getting out of being stuck.- just can end up not doing anything and so life gets very difficult 'cos what you put into it you get out - including work.
    I experience that it can lead to being really socially excluded and being in a muddle because, guess what, some people and organisations can use this as a means of not playing up to their responsibilities to support you...  Oh and I'm probably expecting exclusion based on past experience anyway...
    A whole load of stuff about if only I knew then what I know now....  Regretfully in the absence of tie travel...  Might be why so many people on here are so keen to be helpful..
    Best Wishes
     
  • in reply to Phased

    Thank you very much for your insight.

    Hearing what everyone’s story’s is so refreshing and also helps me recognise things that I hadn’t even thought about that would be due to Autism. I have only just found out about ‘autism fatigue’ which makes so much sense in my case as I’ve struggled for years with being exhausted and low mood.

  • in reply to Barneymoane

    Thanks for your thanks.  As the Australian phrase has it "no worries"  - hehe,  although on second thoughts... 

    "Autism fatigue"  - tell me about it.  hehe, although on second thoughts save your energy as I think I may alrady know what you mean.  That unrealistic expectations bit?  Trick may be not to judge oneself by neurotypical standards that are so seldom in my experience lived up to anyway!  Easier said than done as the so and sos can have you both ways...

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  • in reply to Barneymoane

    Thanks for your thanks.  As the Australian phrase has it "no worries"  - hehe,  although on second thoughts... 

    "Autism fatigue"  - tell me about it.  hehe, although on second thoughts save your energy as I think I may alrady know what you mean.  That unrealistic expectations bit?  Trick may be not to judge oneself by neurotypical standards that are so seldom in my experience lived up to anyway!  Easier said than done as the so and sos can have you both ways...

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