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Just joined - in complete burnout

WolfieKate

Hello

Ive put my story in my profile. I’m 57. I was diagnosed at 45. My parents did try when I was little, I used to hold my breath and pass out rather than do something I didn’t want to do, but it was assumed to be a type of fitting so I got a diagnosis of Epilepsy twice. The next consultant diagnosed an Underdeveloped Nervous System and recommended stuffing me with malt extract, cod liver oil, and vitamin C. And thats what my parents did but by 18 I was Anorexic.

In 2014 was diagnosed Autistic by the NAS when I was 45. The NHS were still using the male criteria at that stage and I don’t think they diagnosed any women in my city.

In the last 2 years the stresses of life (2 Autistic young adult children) and skill regression have led me to not really doing anything. I live in one room and only leave to grab food or use the bathroom. A year ago I was privately diagnosed with TRD, Autistic Burnout and trauma. 

I’m assuming I have years ahead where what I do each day is going to be very limited. Either a process of radical inaction or low functioning. I keep spiders as a small hobby and I am considering a lizard. But i’m 100% on my spouse to provide food and supplies fir me and the spiders. But I sleep 18 hours a day, or just lie in bed as zero energy or motivation. When I try to go to things I have days of anxiety in advance and usually a meltdown means I do never go. 2 years ago I could just make an event with weeks of advance warning, now I can’t so we’ve stopped booking anything.

My main concern is the long term needs crisis caused by late diagnosed people. If my husband died I would have no one to look after me. And nor would my kids. It feels as if society is majorly underestimating the future needs of people of all ages. I’ve tried to ask for a social care assessment but they never call back. In the meantime social media is projecting Autism as a type of minor inconvenience as opposed to a serious issue with aging creating life skill regression. I used to drive even. I go to my GP but they have nothing to offer. The CMHT last said pay for a PA to do my groceries. 

Hope to read more and learn more from this forum and the community. Thanks. And thanks for reading. Slight smile

Parents

  • Hi,

    I have no answers for you sadly, but wanted to say I am in a very similar position as you. I’m 39 and just stopped functioning a year ago and havent found a way of getting up since. I have no tolerance for anything, my previous stressors now lead to full blown meltdowns, and the NHS has zero help.

    I also have an autistic teen son and my husband is carrying everything while I am walking on eggshells with myself trying not to cause an internal explosion by simply having a shower or doing the laundry. 

    i hope you find answers soon! Heart️

  • in reply to L0ttie

    Thanks Lottie. It helps even to know that one person is in the same position as me. When I explain it, it’s hard to understand. But it’s like I have reached zero capacity. I can’t do anything. I’m also reliant on my husband to get everything done. I am grateful my children have reached an age where they can be more independent in some ways but obviously they need support all the time too. It’s a crazy situation. I went to the cinema in February  - thats the last big thing I managed to do  - but now I don’t leave the house and lie in bed in between basic functioning like washing and eating. 

    I had a private assessment a year ago and was diagnosed with Autistic Burnout. But the CMHT team refused to help in anyway. I saw my GP last week and I was so angry but he was very dismissive. AI tells me to embrace tadical inaction in the hopes that i one day I will come out of this burnout but at a new much lower base line of functioning. I’d be happy just to he able to go out to a few things. 

    Thanks so much for your reply. 

Reply
  • in reply to L0ttie

    Thanks Lottie. It helps even to know that one person is in the same position as me. When I explain it, it’s hard to understand. But it’s like I have reached zero capacity. I can’t do anything. I’m also reliant on my husband to get everything done. I am grateful my children have reached an age where they can be more independent in some ways but obviously they need support all the time too. It’s a crazy situation. I went to the cinema in February  - thats the last big thing I managed to do  - but now I don’t leave the house and lie in bed in between basic functioning like washing and eating. 

    I had a private assessment a year ago and was diagnosed with Autistic Burnout. But the CMHT team refused to help in anyway. I saw my GP last week and I was so angry but he was very dismissive. AI tells me to embrace tadical inaction in the hopes that i one day I will come out of this burnout but at a new much lower base line of functioning. I’d be happy just to he able to go out to a few things. 

    Thanks so much for your reply. 

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