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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

  • Hi Roy, I've just seen this post - as you know, I took a break to move home and I'm just catching up with posts from the last couple of weeks.

    I just wanted to reassure you that you're definitely not alone. you and I actually have a lot in common. I don't have a degree, and I went to a terrible school and was bullied. I also had poor handwriting and I still dislike writing - I prefer typing. I rely on my husband (and he also relies on me). I discovered I was on the spectrum about 9 years ago, but although I've learnt a lot and have accepted myself, I still haven't been able to accept that I am "disabled". I think it's maybe due to being older - when we were young people were just expected to get on with life unless they were obviously physically disabled. I don't see the point in therapy as I find it difficult to trust health professionals, and I also dislike talking on the phone. Plus of course we both remember 3-2-1 with Ted Rogers!

    It sounds to me like maybe you have got a bit "stuck", and your recent diagnosis has made everything more confusing. Maybe you need a change - I know that change can be difficult, but it's more manageable if you feel in charge of what's happening, so maybe think about what changes would make you feel more content with your life and discuss it with your wife to see what you can do together.

    I understand about other people in real life not understanding you - I eventually pretty much gave up with taking to colleagues about it and just used this forum if I wanted to interact with others who understand. It might help to remember that neurotypical people's minds don't work the same way as ours, so it's difficult for them to really imagine what it's like to be autistic.

    I am hyperlexic and I do read a lot, but that is mainly novels for my own enjoyment - it's just one of my skills and special interests.  But you also have skills and special interests - we all do, and they vary. Everyone is individual and unique, but in this community we all understand the core issues around being autistic. I hope you feel validated here.

Reply

  • Hi Roy, I've just seen this post - as you know, I took a break to move home and I'm just catching up with posts from the last couple of weeks.

    I just wanted to reassure you that you're definitely not alone. you and I actually have a lot in common. I don't have a degree, and I went to a terrible school and was bullied. I also had poor handwriting and I still dislike writing - I prefer typing. I rely on my husband (and he also relies on me). I discovered I was on the spectrum about 9 years ago, but although I've learnt a lot and have accepted myself, I still haven't been able to accept that I am "disabled". I think it's maybe due to being older - when we were young people were just expected to get on with life unless they were obviously physically disabled. I don't see the point in therapy as I find it difficult to trust health professionals, and I also dislike talking on the phone. Plus of course we both remember 3-2-1 with Ted Rogers!

    It sounds to me like maybe you have got a bit "stuck", and your recent diagnosis has made everything more confusing. Maybe you need a change - I know that change can be difficult, but it's more manageable if you feel in charge of what's happening, so maybe think about what changes would make you feel more content with your life and discuss it with your wife to see what you can do together.

    I understand about other people in real life not understanding you - I eventually pretty much gave up with taking to colleagues about it and just used this forum if I wanted to interact with others who understand. It might help to remember that neurotypical people's minds don't work the same way as ours, so it's difficult for them to really imagine what it's like to be autistic.

    I am hyperlexic and I do read a lot, but that is mainly novels for my own enjoyment - it's just one of my skills and special interests.  But you also have skills and special interests - we all do, and they vary. Everyone is individual and unique, but in this community we all understand the core issues around being autistic. I hope you feel validated here.

Children
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