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My first post....

DenceNucliaAtom
DenceNucliaAtom Member Posts: 19 Connected
edited October 2021 in Autism and neurodiversity
im 32 years old and have lived my hole life thinking I was the only one. I was starting to think that maybe people where right when they said I was stupid or lazy or annoying. I learnt to hide my thoughts and feelings early on as I would only annoy the people around me if I didn't pretend to be "normal" my dad would call me a lazy little **** and my school teachers would keep me behind because they thought I just wasn't trying. hours and hours of handwriting practice to no avail.

 I knew it wouldn't help but they still thought I just didn't want to learn. I was kicked out of primary school for being to dumb and was forced to go into the year below me.  I was wrongly diagnosed with dyslexia and went to a spatial dyslexic tutor. I think she did more harm then good. I wasn't improving and was made to do hours of work sheets which I just didn't understand or improve. People told me how I should be and feel and how I need to learn. Not one person actually listened to me when I said this isn't working. I just accepted I was different. I just sat in silence suffering. I Didn't understand why I wasn't shy yet I couldn't deal with large social groups bigger then one person.

 In my mid to late 20's I actually started to think maybe I was just stupid and lazy. I left school at 16 and have no gcse's or A'levals. I always knew deep down that I was different. and that I defernetly wasn't stupid. but eventually you just bereave was you dad and people say. I can't keep a job and I live in an absolute tip. Simple things I find hard like tidying food shopping washing even leaving the house sometime yet I can do a Rubix cube in under 50 seconds, I can ride a unicycle. I randomly just know how to play guitar piano and drums. I learnt how to pick locks (just for the fun of it) I bought myselff to build websites and CAD. The list of what I can do is endless yet I can't keep a simple job or whatch a film and remember the characters names.  I nearly leave my house and can count my friends on less then a single hand. I can't keep a relationship going because people just don't get me and my brain and most relationship end in them saying I'm too f*cked up and they can't deal with me.

 I thought I was crazy or psychotic as I explained what it was like to be dyslexic I never understood why other people didn't have the same symptoms as me. I just thought people either were lying that they were dyslexic or the just didn't have proper dyslexia. no-one understood me when I tried to explain and the people I open up to just leave because they can't deal with me. So I just try not to say to much I smile and larph and agree with people just to seem "normal" 

Life is a living hell.

I could go on for days with situations on a daily bases I go through and I've never met anyone thats understood. Until one day someone came up to me and said "you no you have Aspergers" I didn't know what it was so I looked in confusion. Id Hurd of it but I didn't know at all what it meant. Started to google it and for the first time in 32 years I was reading stories that made compete sense. They were the same things I feel and think and have been through! this all hapened a month ago and have never talked to someone who actually gets me properly or goes through the same things as me.....the living torture. I broke down into tears for days. Everything finally made sense! my brain started ticking going through all my life events like I was watching a film in my head picking highlights from my once miserable unbearable self.

 I hated myself all these years. It all added up I would read something about autism and go back to that place in my mind of events I couldn't explain or understand. Why I got into trouble for things I didn't contiosly do. or what happens to me in social situations. I finally have an anser! and I finally know there are other people like me. Im not suffering alone even though I live by myself. Im very picky with who I can live with and who I let into my life. I was umbarist of how I live and myself probably because of how I grew up.

Im sure now one will read this far down as I spill my thoughts to people I've never met. I haven't slept in almost 3 days and haven't eaton anything in 2 days. 

Even having a shower is hard. the water hurts my skin. I didn't even no what hypersensativaty was. After I read about It I realised how badly it was affecting me. Lights/ sounds/ signs/smells/ I can't think strait with all the distractions. I found ways to shut the outside world out. I play my music really loud and just close my eyes and try and turn it of. sometimes my brain is going so fast I cant actually pin point what im upset at and I just try and take little screen shots  of whats going on in my brain and try to understand what my subcontios  mind is thinking. 


anyway..........this is my first post knowing I have autism and it was like having a tank lifted of my shoulder. and I can deal with life knowing im not going crazy or theres something wrong with me.

Its not a decease or illness. There is nothing "wrong with me" I just see things and feel things in a different way, now instead of suppressing myself im going to embrace it because every person is spatial.

Life is an amazing place, and the world is beautiful.
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    Hi @DenceNucliaAtom
    Welcome to the community, it sounds like you are having a really tough time.  Are you getting any support?

    Scope
    Senior online community officer
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    Hi Sam, thank you for your response. Yea, things seem pretty overwhelming at the moment. Ive just been blocking a lot of stuff out as everything seems to fall at the same time. Its seems to just be one thing after the other at the moment. in anser to your question, Im not receiving any support, which isn't helped by the fact I live on my own.  
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Thank you for sharing this with us @DenceNucliaAtom: it sounds like things have been really tough but I'm glad that you seem to be finding answers at the moment.

    You may like to have a look at our ASD category discussions and have a chat with other community members who can relate to your situation, and you may also be interested in the National Autistic Society's services, to see if there are any that might suit you. If there's anything specific we can advise you on, do let us know!
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hi @DenceNucliaAtom
    I kind of found this post by accident and I hope you are still around :smile: Just wanted to say how very, very brave your post is and what a tremendous effort you seem to be making. My admiration and respect to you.
    Here and listening,
    Warmest best wishes,
    Richard

  • Salamka101
    Salamka101 Member Posts: 41 Courageous
    Hi @DenceNucliaAtom

    My youngest grand-daughter had similar problems at her first primary school. Fortunately my youngest daughter works with children with special needs and stepped in  Our little Holly was moved to a different school where her 'off-days' are never criticised. Still trying to work out how her teachers have done it but her last school report after just 2 years at the new school was glowing. Top of her class in her stats.

    I had a rough time in my own childhood for very different reason so I do sympathise entirely. Never forget you are who you are, embrace it, welcome it.
    My daughter tells me that ASD is often linked with high intelligence and your skill set suggests you have a lot going for you.

    Be glad to compare notes with your progress and the progress of my liitle angel and will talk to my daughter to see if she can pass on any useful knowledge in dealing with late diagnosed ASD.

    Wish you all the best. Stay positive!

    Salamka101
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    Thank you for your replies. I’ve only just seen them now. I’m still here but feeling that I’m at an end point. I still haven’t received any help and am desperately in need of help. I’m hardly functioning and don’t leave my flat. I wish I had better news....
  • thespiceman
    thespiceman Member Posts: 6,390 Disability Gamechanger
    Hello @DenceNucliaAtom   Pleased to meet you just reading your story.  Sorry what you are going through.

    Sorry just an gent asking.  How can the community help and advise.

    Have you for example contacting SCOPE helpline for advices and information.

    Understand @Pippa_Scope has given you information and advice.

    Make a plan of what you would like to do with your life. Make a  list of goals and aims that can be achieved.

    Please can I add I understand that it is difficult for you.

    You have to try and help yourself if you can. I do know it is not easy.

    Understand it is never ever is.

    You have to be strong and positive and find the support you need.

    Am here to listen.

    Wish you all the best but you can do this.  Understand I have been there so many times

    Please am here if you wish to chat.

    Hope and pray if you can succeed


    Take care

    @thespiceman .


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello @DenceNucliaAtom and I am so glad you have responded.
    I've read every word of your brave and powerful post TWICE now, and hope very much that we can find ways to support you. Since it was posted a long time ago I'm going to re-post here the link to ASD discussions and resources. Please have a look and see if you can find people to talk to who really know what you have been going through.
    For what it might be worth to you, I - who have no similar disability to your own - can also count my friends on the fingers of one hand. The number of real friends anyone has is something you only find out when the s***t hits the fan.
    I worked for the last ten years of my working life with youngsters on the spectrum, those with aspergers and autism, and I learned in that time (which would have been some time after you left school) that educators (and others) are often absolutely clueless when it comes to helping. I heard established teachers referring to my department as 'the place kids go to learn to be autistic' and saying 'autism is just another middle class fad'. The amount and degree of inhumanity in teachers has never failed to surprise me (which does not mean to say there are none), so what you went through is both horrifying and tragically unsurprising.
    I would be honoured, DNA, to be considered your friend.
    Warmest best wishes,
    Richard
    @JennysDad
  • porsche
    porsche Member Posts: 3 Listener
    Hi hun ,hope things seem a little better up to date,I have a long list of ailments which leaves me very depressed I have support of my family but only for what they know ,alot of my feelings are under cover I don't let anybody know how I really am ,I feel I have issues that are not diagnosed but won't goto Drs, I feel lonely in a crowd,if you get me n a lately am having a constant fight within ,I don't want to go out ,get dressed,talk to anybody ,but have 2 pretend n go meet family to pretend im ok ,inside I just cant wait to get home,I also find relationships fail because people don't n can't understand me ,can we maybe text in private ,it might help just to tell someone how this hour is and the next, and how we are coping ,just an idea ,
  • smiler43
    smiler43 Member Posts: 32 Courageous
    hi dencenucliatom

    I don't have aspergars syndrome but sounds awful I had a brain tumour medulloblastoma two years ago they could not remove all of it to dangerous so have 3 monthly scans I had 5 small ops to my head and now partially disabled from The effects.  I cannot bear loud noises or music. I am glad you have finally found out what you . This site is good for venting or just chatting as very understanding and supportive site group .
    We are always here to listen. X 
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    Thank you for your replies. I’m doing much better today. When my autism is bad I can hardly function. I also live by myself so knowone knows what I go through on a bad day. I find communicating and expressing myself through music really helps me figure things out. I think music has saved me so many times. I’ll leave you guys with what I created just mucking around on my keyboard if I can post a video. Not sure how to through. Thank you so much for your replies. Just reading then makes me feel not so alone. 
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    Ok, doesn’t seem like this website allows me to post a video 
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hi @DenceNucliaAtom and it is good to hear that you're feeling a tad better.
    Do you have anything on Youtube? I believe you can use the link icon on the post to link to a video there. Others may know better :smile: but I'm working on this one myself.
    Another member posted audio files in our KaleidoScope Members' Gallery, you might like to have a look.
    Best
    Richard
    @JennysDad
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    I don’t use YouTube but I guess there’s never a bad time to start, so I’ve uploaded a video of me playing. 

    https://youtu.be/8gtU1wYOzDc
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    edited May 2018
    That's excellent. Genuinely excellent. I could listen to it all day. Be very, very glad to see that and more in KaleidoScope :smile:
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    Thankyou. It is very rare that other people here my music. I tried clicking the link you posted before for kaleidoscope but it comes up with an error saying webpage doesn’t exist. 
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hi DNA and sorry about that. The link isn't working for me at all. Just going to try the full link here and see if it works.
    https://community.scope.org.uk/discussion/41283/kaleidoscope-our-own-gallery-for-members-art-work-crafts-and-photographs#latest
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Yup. That one worked. Give it a try if you feel like it.
    Best
    Richard
  • DenceNucliaAtom
    DenceNucliaAtom Member Posts: 19 Connected
    Thanks again. The new link worked. Also the video preview appears to be working on that page as well. 

    my style of playing is unusual as I tought myself and can't read sheet music and don't play other people's songs.  I find it a highly affective method to let my stress and feelings out in a non disruptive way 
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    That's some talent you have there, @DenceNucliaAtom. I set out to teach myself on the electronic keyboard once - great keyboard, but I just can't get around to practising and without music I'd be completely lost.
    Kudos to you.
    Richard

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