Autism Getting Worse

Hi, I'm new to the community. I've not tried talking online and I do feel a little anxious but I'm hoping this will be a safe space for me and I'll be understood.

I live with my family but they don't believe in autism and see it more as an excuse and force me to talk and do things that trigger me and cause anxiety. I was diagnosed a few years ago had to go through it all on my own my family didn't want me to do it and said I wasted NHS money and time. I'm having to mask all the time every day and it's tiring me out and I get burn out. I've literally no one to turn to and no one who understands me and what I'm going through.

I've noticed that my autism is getting worse, the things that affect me I mean. Is that common? I don't know much about it. I get eye sensitivity. I'm sensitive to lots like sounds and touch but my eyes and brightness are affected really bad. Everything is so bright, I wear sunglasses a lot now even inside because of my eyes. I can only use my phone and laptop for about 10-15 minutes before my eyes start hurting before it becomes too much for me. Usually the result is me feeling tired, dizzy and my eyes feel like they are strained. 

Digestion is my other issue. My stomach hurts, get feelings like trapped wind a lot like there's lots of movement in it, very uncomfortable and things can be 'loose'. I do have IBS and anxiety so it's probably linked with this but I do struggle with it and feel it's worsening.

And last other than struggling with being social is anxiety. I have anxiety and it affects me each and every day but weirdly it doesn't have a trigger, or if it does I've no idea what it is. I'm anxious all the time for some reason and it causes a lot of physical and mental effects but nothing seems to improve it and I no idea what causes me to feel so anxious. My doctor keeps suggesting medication but I know side effects are common and I don't want them so I say no.

Just feeling alone at the moment.

Very alone.

Parents
  • Hi Summer, thank you for sharing all that. I know it cant have been easy. First of all I want you to know you are not alone, not at all. You have a whole community of people here who care and are here to support you

    Im sorry to hear things are tough with your family and they dont understand, I cant imagine how hard that must be.

    What you are suffering at the moment sounds a bit like burnout. When you describe "autism getting worse" it sounds like how I have felt with my burnout. Even things you would normally be able to do you cant do anymore. For instance I used to go to concerts at Wembely and the 02 and football matches at huge stadiums but now I cant even cope with the crowds at my small local football ground and the thought of a concert would send me into panic and meltdown.

    I know its hard for you to change the situation at the moment while you are living at home. Im here if you need someone to talk to 

Reply
  • Hi Summer, thank you for sharing all that. I know it cant have been easy. First of all I want you to know you are not alone, not at all. You have a whole community of people here who care and are here to support you

    Im sorry to hear things are tough with your family and they dont understand, I cant imagine how hard that must be.

    What you are suffering at the moment sounds a bit like burnout. When you describe "autism getting worse" it sounds like how I have felt with my burnout. Even things you would normally be able to do you cant do anymore. For instance I used to go to concerts at Wembely and the 02 and football matches at huge stadiums but now I cant even cope with the crowds at my small local football ground and the thought of a concert would send me into panic and meltdown.

    I know its hard for you to change the situation at the moment while you are living at home. Im here if you need someone to talk to 

Children
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