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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

  • I am glad Roy, that you were able to express your feelings here following diagnosis. Seeing the report, with a full diagnosis in print, is a shock. 

    People who aren’t neurodivergent often don’t get it, or they appear to get it, listening and acknowledging what you say, but then they move on and that is that. No mention of it again and no enquiry as to how you are doing, or what it is like for you now/today/this week. Others might say that “we all have to make an effort” and “aren’t you getting through now; so what’s the problem?” At least that is the response I got when disclosing my diagnosis.

    I have friends, but I don’t see them that often so most of the time I am on my own. I like being on my own, yet sometimes I feel very lonely and it is difficult to cope. 

    You may feel stupid, but clearly you are not, as demonstrated by your intelligent engagement on this site.

    Life can be so cruel, so many of us have had long ghastly years at school, so our brains have been programmed to think we are stupid, even if there is evidence that shows we are not. It can take effort through therapy to challenge those thoughts to make new brain connections that reflect who we really are. Incidentally, I left school with 2 ‘O’ levels and 1 CSE. School was a dreadful experience and I didn’t return to education until my late 30s. I felt the most awful waste of space, and still do to some extent, but diagnosis has helped me realise that it’s not my fault as a person. 

    You definitely belong here and I value your presence.

    I hope you are doing ok today.

Reply

  • I am glad Roy, that you were able to express your feelings here following diagnosis. Seeing the report, with a full diagnosis in print, is a shock. 

    People who aren’t neurodivergent often don’t get it, or they appear to get it, listening and acknowledging what you say, but then they move on and that is that. No mention of it again and no enquiry as to how you are doing, or what it is like for you now/today/this week. Others might say that “we all have to make an effort” and “aren’t you getting through now; so what’s the problem?” At least that is the response I got when disclosing my diagnosis.

    I have friends, but I don’t see them that often so most of the time I am on my own. I like being on my own, yet sometimes I feel very lonely and it is difficult to cope. 

    You may feel stupid, but clearly you are not, as demonstrated by your intelligent engagement on this site.

    Life can be so cruel, so many of us have had long ghastly years at school, so our brains have been programmed to think we are stupid, even if there is evidence that shows we are not. It can take effort through therapy to challenge those thoughts to make new brain connections that reflect who we really are. Incidentally, I left school with 2 ‘O’ levels and 1 CSE. School was a dreadful experience and I didn’t return to education until my late 30s. I felt the most awful waste of space, and still do to some extent, but diagnosis has helped me realise that it’s not my fault as a person. 

    You definitely belong here and I value your presence.

    I hope you are doing ok today.

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