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Feeling totally lost.

Roy

I’ve been diagnosed now for about six weeks and feel totally alone, I’m not sure if I even belong here, most of you seem to have degrees and read a lot, some hyperlexic. I seem to have been dealt the dyslexia and dysgraphia cards, I went to a terrible school, was bullied and left with no qualifications. Detention for poor handwriting was about the only help given.
I’ve tried to explain to just a few members of family and the one friend I had that I am actually autistic, I waited 3 1/2 years for a diagnosis, I’m not pretending to be autistic or making it up. I don’t expect people to gush, but just nothing.

I’ve read my report, there is doubt to whether I could ever live alone, I apparently rely heavily on my wife. I didn’t realise I have, I suppose disabilities. It’s shocked me.

I can’t afford private therapy, the best the NHS can offer is talking therapy on the telephone, I have an absolute phobia of telephones and don’t think I could talk to a total stranger, and yes I feel quilt for dismissing help. The friend I told sent back a message that I most probably need to organise myself better, everyone seems to think that I have coped for over 50 years so I can carry on as normal. The truth is I can mask so well that even I don’t see it.

I have absolutely nobody who I can explain to who actually understands, I know I have here but sometimes just someone to ask if I’m okay and mean it, not silly small talk. I suppose I want to be heard and seen as autistic but without cruel comments.

I always just feel stupid, I work for myself full time and don’t actually earn enough to pay tax, my wife pays the electricity bill for my workshop. I never change enough, I am the worst critic of my work, everyone else seems to think it’s amazing, i don’t see it.

I have just never felt so confused and lonely, I get up every morning and clock watch, hoping it will soon be bedtime. I enjoy bedtime as nothing is bombarding my senses. I don’t feel depressed, I just feel nothing. I not after sympathy, most probably just venting.

Parents

  • Hello Roy, I also left school without qualifications, I left in the first year of secondary school and never went back mostly due to bullying. I don’t class myself as particularly intelligent but I believe you are from how you write and articulate yourself. You also cannot help having autism and other issues, would you look so down on others if they had the same issues as you or would you feel more empathy? 

  • in reply to Autismman

    Thanks for replying, sorry you went through a similar situation. I don’t think I did see disability properly, I imagine we are all guilty of seeing someone with an obvious disability and not seeing the person behind it, or what other unseen disability they may have. 


    I've always relied on teaching myself anything I’ve needed to learn, I can do it in a way that suits me, I used to drive my maths teacher crackers, I would normally get the correct answer but worked it out in a totally different way, she just couldn’t understand why?

    Im so glad for spellcheck, without it, you wouldn’t understand anything I write, I often confuse the spellcheck!

  • in reply to Roy
    Roy said:
    I don’t think I did see disability properly

    Me either, I often thought I would see it in myself if I had any. I figured I was just the way I was and it wasn’t going to change because it’s my personality. However somethings we have little control of, I can’t get any dopamine or excitement from social interactions. I am better one on one in a quiet environment that’s because there’s less distraction but even then sometimes I find my mind wandering when the conversation starts to die off and I run out of things to say or energy to force some small talk out. I still use spellcheck a lot, some sites try to force American English which gets a little more confusing!

Reply
  • in reply to Roy
    Roy said:
    I don’t think I did see disability properly

    Me either, I often thought I would see it in myself if I had any. I figured I was just the way I was and it wasn’t going to change because it’s my personality. However somethings we have little control of, I can’t get any dopamine or excitement from social interactions. I am better one on one in a quiet environment that’s because there’s less distraction but even then sometimes I find my mind wandering when the conversation starts to die off and I run out of things to say or energy to force some small talk out. I still use spellcheck a lot, some sites try to force American English which gets a little more confusing!

Children
  • in reply to Autismman

    My wife has informed me of evening occasions before, “you will be okay, Mary’s husband will be there, you will both have lots to talk about.” I’ve never met this person, I have no prepared script, what are his hobbies and work? Plan B, start an argument and not go. If I had to go I would stand in the corner of the kitchen, observe the party and drink my body weight in beer. Obviously hoping to nod and smile at the correct times. “You can take your coat off.” I didn’t know I was staying this long.

  • in reply to Roy

    The idea of just going around someone’s house where there will be a small gathering or party of sorts, not setting a time to leave and just going with the flow is very alien to me. Feeling like you can be somewhere that’s not at home and still feel comfortable being your self is also an alien concept. Also, the yawning is something I do also, it’s not just your average tiredness, it’s more than that it’s actual fatigue and it feels as much mental as it is physical. I often experienced this at work as worked in an office surrounded by people with varying energies. Some people would just talk at me which was soul sucking leading me to feel even more drained and when you can’t get up and walk away when you need to it’s hell. I too struggle to consider myself as disabled because for the most part I function as you may expect anyone else to however the diagnosis of autism is for the most part like missing a link or chain that enables you to connect to others in a more natural way and less of a systematic one. People are not seen as objects however they are an enigma when it comes to their social behaviours in my own opinion. 

  • in reply to Autismman

    I’ve sat many times just wanting to go home, wondering what to say next, hoping I’ve not said something strange, also hoping they didn’t notice me yawning. It’s different if asked a question, small talk just seems to be like pulling teeth, but more painful.

    I think we often don’t recognise disability in ourselves, we have been who we are since birth and conditioned to act normally.

    I still feel uneasy thinking of myself as having disabilities. I feel I don’t have the right to use the term, I  then feel guilty of not recognising  different disabilities, I suppose I still think of a disability as someone with a physical disability, and so it goes on….