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Recently diagnosed

sphynx

Hi everyone,

I’m very recently diagnosed, (had my assessment yesterday) and while I’ve been wanting this validation of my experiences for years, I’m now doubting myself, and feeling unsure how to move forward. Apologies for the length of this post, but I would really appreciate peoples thoughts on any of the following…

Whilst I definitely have lots of ASD traits, I have empathy, and I don’t have a really strict routine. I also haven’t had intense interests fora few months. I’m fine with abstract language, (when it’s me using it.) I know you don’t have to tick all the boxes, but right now I’m feeling like a not completely valid autistic person, especially given that growing up, no one really took me seriously when I said I thought I might be autistic, and even today someone told me that they would have no idea i’m on the spectrum without my saying so… I wonder if anyone else shares some of these deviations from the traits usually associated with ASD?

i’m also worried about my diagnosis not being taken seriously by my family. I would love to help them understand, but feel like they don’t realise how much my life, and the lives of other autistic people, are impacted by being on the spectrum. How might I navigate the conversation?

Finally, I wonder if anyone has guidance on disclosure: when to do it, who to disclose to, and how to disclose.

Thanks so much in advance for your thoughts.

  • in reply to JJ

    No you are most definately not "a cold unfeeling monster" and you don't have to make small talk or complement people's clothing choices or tell white lies or whatever else society wants to prove it... just DO what counts and let the record speak ;-)

  • in reply to Dawn

    Indeed - I am often afraid to 'open the empathy box' in case I give away my life savings and internalize and re-live every torment of every person who has suffered, ever.
    So far, it has been sufficient to scream 'I AM NOT A COLD UNFEELING MONSTER' to somebody, once every few years, and then carry on like I don't empathize with anyone...
    Oh well....

  • in reply to JJ

    yes my employers ran around not knowing what to do ---  so i agree if u know what will help u eg allowed to wear headphones , sunglasses  etc etc have a list ready and they will focus on that 

  • Oh Lord. Yet to go through the assessment, but I get it.

    I got disturbing traits which are so there, and others my mother reports as a child, but who'd notice now?

    If you've got the diagnosis, don't doubt it.

    As for the empathy... the times people have said: to me "don't you see how x feels about y?" And no, I've no clue because x never said. But yet this is the same person, who as a lttle girl saw an appeal for a war zone on telly and demanded to know what her mother would do about it. When her mother said there was nothing she could do, she fetched her own piggy bank and demanded to be allowed to turn over all of its contents to the appeal fund.

    We can't read the cues, but we bleed for humanity. The empathy thing is BS. We feel.

    As for your family. They will see what they are capable of seeing... 

    Congratulations btw x

  • in reply to JJ

    Sorry - I meant to say that with HR / education administrators, a short list of 'needs' would be something that they can do something about. If you just tell them the label without anything much extra, they won't have a clue as to what they're supposed to do about it, and hence it won't help you.

  • For starters: you are not alone - by a long shot.

    I have the 'label' diagnosis and am waiting for the report too.

    I have told my 2 (very unsurprised and definitely on the spectrum) best friends - it was a massive weight off my shoulders.

    What I said was "I have just been going through an Autism assessment, it turns out I have it. That's why I've been acting even more strangely recently, but don't worry, I'm still going to be eccentric quirky old me, maybe even more so, and I'll keep on messing things up in ridiculous and spectacular ways, but I'm not going to feel quite so bad about it anymore". And then basically got off the phone as soon as possible...

    Family has been more of a weird one. When I was trying to broach the subject the whole thing went incomprehensibly bizzare - suffice it to say that I am not capable of managing their reaction (and probably vice-versa). They have got the message though - and we're not discussing it directly - in true British fashion - and I'm pretty sure they're smart enough to know not to push me beyond the point I can cope.

    With regards to 'the traits' - I believe it is different for everyone, and as much as I would love (/hate) to 'pattern-match' myself in to a stereotype, these traits seem to come and go like sparkles in a kaleidoscope (if that's not too figurative language).

    Like aidie says: if you can possibly wait and do some introspection, I would, especially in terms of HR / college administration. I am hopeful (for myself) that the report will give me some information and clarity on my needs. And needs will be a much more communicable set of information than the giant, unwieldy and very poorly understood label of Autism.

  • I u are bursting to tell someone only tell your very close family and if working only HR and say your manager stating you dont want everyone to know

    If you can Wait for a while after your report is read to you so that you are more settled before telling anyone. 

    everyone is different so in the end the decision is your but you cant un-tell someone

    Half my family did take serious other half didnt 

    The half that did take it serious have an autistic child themselves and appreciated me coming out in support of their son