Finding my home / tribe

Hi all, long story short I've been on the waiting list for ASD evaluation for 12 months and hoping for a positive result in Spring, did an awful lot of blogging and connecting with others via social media last year and feel so much in common with most others on the spectrum, but then realised that social media is a real source of stress for me and withdrew completely from all platforms in Autumn last year.

I miss the connections I made, but can't risk going back as I'm pretty sure I'll end up consumed by it and stressed again. Hopefully I can make some good friends here. I tried Wrong Planet but chose a non-anonymous username that I couldn't then get rid of, and think that remaining anonymous here might allow me to discuss more freely.

I'm middle-aged, and male.

The impact of ASD on me is (as far as I know):

  • Sensory issues:
    • difficulty processing voices in the presence of noise & inability to screen out unwanted voices / conversations (which makes working in an open office a hellish challenge)
    • sensitivity to temperature changes and smells
    • sensitivity to some textures
    • (very) mild synaesthesia
    • poor interoception?
  • Alexithymia
  • Executive function issues
    • Hyperfocus = great work performance when "on task / in the zone"
    • Easily distracted from "the zone"
    • Hard to get into "the zone"
    • Constantly forgetting what I was going to do next (especially if doing something "quickly" first)
    • Working memory issues
      • Need to see source and destination together when copying data
      • Can't easily create visual imagery in my head, but I'm a genius with it on paper (if it's a diagram)
    • Long term memory issues
      • Memory like Swiss cheese where the gaps are topics not periods of time
    • Impulse control problems
  • Anxiety
    • Rumination & guilt
    • Catastrophising
    • Feeling unable to relax around people
  • Eye contact hurts
  • Ask me "does my bum look big in this?" and I'll answer truthfully; you need to know, presumably.
  • Combine the social problems secondary to this lot with the fact that my dad has undiagnosed ASD & didn't model successful male-male relationships for me = I find most other men intimidating & prefer to talk to women
  • Tend to talk about myself a lot :-)

For the last 20 or so years leading up to autumn 2017 I had been unknowingly masking all of this using intellectual effort, but then the elastic snapped and I suffered what I'm describing as a mental burnout equivalent to breaking both arms and both legs. Now I'm carefully rebuilding myself in the light of all of this new knowledge, knowing that I need to try extra hard to monitor my stress level (see above re interoception and alexithymia) and also knowing that what I thought was a comfortable 5/10 was closer to 95/100 and there are zones below where the happy people live.

That's probably enough for now! I genuinely do care about other people too :-).

  • Well good luck with your assessment when you get it

    Hopefully you can connect with people and enjoy social interactions with people on here Slight smile

  • I feel what you have written covers me. i have difficulty explaining myself. or even writing how i see or do things. because i have done it all for so long :-(

  • Great question ~ this is me but this is the first time I’ve linked it to autism 

  • I asked because, like me, you struggle with creating visual imagery in your head. I think there is a link between that and getting lost (imagining which road to take next on familiar routes). It also seems (for me) to link to taking actions without imagining consequences (if I do this, that will happen).

  • Interesting question - I *would* have said no years ago, but I do know that it takes many attempts at driving myself somewhere before the journey becomes second nature, even with Sat Nav, and I *have* to be driving; being taken somewhere doesn't help me find it on my own. I can also become suddenly unsure where I am (e.g. what direction I'm approaching a familiar place from) - i.e. I know 'm heading towards a familiar village for e.g., but it's not until I arrive that I realise which road I was on :-).

  • As a rough guess - do you get lost easily? Not know fully what you are doing if the journey changes (roadworks, cancelled trains, etc), not recognise familiar surroundings?

  • ...oh, and when in burnout, it means you can put even more focus on yourself (if that’s even possible) so how freaking good is that, especially for self obsessed aspies like us Heart eyes 

    But seriously though,  it’s been the best thing to ever happen to me. I’ve had burnouts before, periodically all my life, but never as severe as this one (not since I was 18 months old anyway) so yes, it’s been one hell of a roller coaster with plenty of suicidal moments, but it’s been a time of radical self discovery and no matter how ridiculously painful and lonely it was at times, I wouldn’t change it for the world and the good folk on here helped me through it, every step of the way.

    So you’re in good company here and you’ll always find people who lean more towards your own outlook and if that’s not me, please don’t ever take any offence by anything I say, because it’s never intended that way, I just see and experience the world in a way that I first thought was just my autism Face palm tone1‍♀️and I then realised, no, that’s just you! Lol!

    So seriously ~ I probably don’t need to say this (but I’m feeling a little fragile just now) so I’ll say it anyways ~  but if I ever write anything you don’t like, please just either ignore it or tell me ~ either way I won’t take it personally and sometimes it’s better just to ignore me, I know I have to ignore myself at times, but never feel like I’ve insulted you or something because that would never be the case, because if it was, you would be in no doubt whatsoever that, that was what I was doing :) I can be pretty good with words, it seems, when I want to be! 

  • I love that ~ that brought so much joy to my heart reading that ~ I could have written it myself (If I was as good at expressing myself as you are, which you’ll find, I’m not) ~ but I love it, honestly, I relate to all of it, only I didn’t call myself a chump, more like the world’s biggest  *****! ;) hahaha 

    And yes, like you, I value (deeply) kindness and understanding and I do love ALL people but on a much deeper level, rather than a surface level kind of love, which I don’t really do ~ yeah, you can  ask my son, family and friends and they’ll all sing in unison on that one :) but they do love me, all the same. I’m their little weirdo Stuck out tongue winking eyeYum 

    Great to have you here. I just knew your first rendition (if that’s even a word!) wasn’t how you really see yourself, I knew you were much more alive than that dead list of symptoms. 

    Oh I’m loving burnout, honestly, I’ve got 4 support workers and my autism psychiatrist trying to coax me out of it because I love it so much but sadly SobSobSob it’s run it’s course, I know I’m coming out of it, but two years in burnout, come on, I don’t want to leave it, it’s been heaven. I thought it was every aspies dream to just be alone all day every day, indulging in special intereats, sleep and little else! Ok hand tone3

  • Thanks dazahomestead, I certainly feel at home with other people on the spectrum, which gives me hope.

  • Hi BlueRay & thanks for the welcome. It’s been a rollercoaster couple of years, which I could summarise as:

    • Argh! I hate work and people!
    • OMG, could it be ASD?
    • Wow! It is! That explains do much! I’m so happy!
    • OMG I’ve got a condition!
    • My analytical brain is lapping up data about ASD and giving me incredible insights. I must tell the world! I might even save lives!
    • OMG I’m not who I though I was for 50 years. I’m sad.
    • Tehehe I will give myself permission to stop feeling forced into silly social traditions that make no sense to me. Life is good!
    • Now I understand my crap memory. Hmmm.
    • I’m a fraud. I’m making this up for attention.
    • Gosh I *am* a bit self centred generally aren’t I?
    • I’m not the superhero genius I thought I was. In fact, I’m a bit of a chump.
    • I’m through with social media. I was making a fool of myself for the sake of attention.
    • Ah well, here’s to 2019. Let’s hope my ASD evaluation can see my ASD.

    On the “caring for others” point, you’re making me think. I guess what I’m saying is that I value kindness and understanding, rather than I have a deep desire to look after people (I don’t, and my wife and kids tell me!). I guess I enjoy the attention I get from a person if I'm being helpful to them, but I'm quite selective about who I want to help (my terms!).

    Relaxed

    Sorry to hear you're still in burnout - it sucks the life out of you big time.

    Oh and the list of difficulties, yes I keep meaning to come back and edit the post as my ability to focus and apply logic has given me material success and an enjoyable career as an engineer / analyst. What I don't know though is whether this is a result of my ASD or something that has helped me mask it...........possibly a bit of both.

  • Hi and welcome. Reading your post I found in it everything I've felt, experienced all my life. You put it more accurately than I could express myself. It's good to find and communicate with others that 'understand' you.

  • Is it just me or have you just listed a load of difficulties? Lol! It sounds like that. I could be wrong because I can relate to a lot of those things and I don’t see them as difficulties so it could just be the way I’m interpreting them Laughing

    I’ve never quite understood that last one though, where you said you care about other people, and even my son burst out laughing once and said ‘you really are a weirdo aren’t you mum’’ (as a term of endearment) when I tried out this ‘I care for others, role’ and I told him, I was happy because he had done something he enjoyed (can’t remember what it was) ~ whatever it was, my attempt at appearing to care about others failed! lol! I was still the weirdo I always was

    And welcome, it’s nice to meet you. I don’t go on social media either. Like you, I find it all too much and I’m much happier without it, but thinking about it, that’s maybe only because I’m in burnout, because I did enjoy being on Facebook when I wasn’t in burnout! Thinking mmmmmm.  And I did vow ‘I will never go on Facebook or any other social media platform again’ ~ in the most aspie dramatic way I could ;) but I’m realising now, as I’m slowly coming out of burnout, that I might, possibly, go back on Facebook again, at some point. I think it’s while I’ve been in burnout that it wasn’t good for me. Thanks for bringing that to light for me. I’m not out of burnout yet, so won’t be re-joining the ranks of facebookers just yet (if ever) but I can see now that it’s a possibility :) Thank you Pray tone3

  • Thanks MemeConsumer, that's helpful to me.

  • I will rate how much this is a sign of autism from 1-10 1 being not a sign of autism and 10 being 100% a sign

    Yes, this is a sign of ASD / Autism, it is extremely hard to lie with autism, as it makes you feel guilty. 8/10

    "The Zone" from what I can guess, is the right mental place, then yes. 5/10

    Eye contact really hurts me aswell. 10/10

    Sensitivity to some textures, 3/10

    difficulty listening to voices and drowning out voices, 8/10

    sensitivity to changing smells and temperatures, 5/10

    Hyperfocus - 8/10

    Forgetting what to do next, 9/10

    Can't easily create imagery in the head, 7/10

    Feeling unable to be calm around other people, 8/10

    I'd say you have autism, as I can relate to about 80% of the things you listed there.

  • hello and welcome! I'm F, 40s, diagnosed AS 6 months ago, sensory issues, alexithymia, anxiety, hate eye contact, etc

  • Thank you Kitsun, yes should only be a couple more months hopefully. 

    I thought I had found the perfect way to socialise on social media, but found on Facebook I was constantly stressing over “curating” and categorising my friends (not fair on them either). Then Twitter seemed a breath of fresh air connecting through topics rather than traditional  social connections, and with such a “now” buzz, but even being a bystander in all of the nasty arguments was dragging me down. Then when I got people criticising me directly I couldn’t take it.

  • Hello and Welcome.

    I hope that you don’t have to wait too much longer for your assessment, do you have an assessment date yet? I was lucky in that I only had to wait 6 months but I know that many are not so lucky :-( 

    Social media can be good for connecting with people if used in moderation BUT there is also a dark side to social media. What was it about it that was stressing you out? I actually permanently deleted all my own social media accounts in early 2018 as I decided that it wasn’t good for me any more. It’s great connecting with people on here though. Definantly advisable to use an anonymous username, in fact I don’t think you’re allowed to use you real name or give any person identifiable information on here.

    You’ve clearly had the time to assess your own symptoms in detail, which is good and should be helpful when you have your assessment.