Regression

Since being diagnosed in 2020 I have been working hard to accept myself, adjust life to accommodate the things I struggle with.

But I have noticed that increasingly I am unable to do many things I used to be able to do: take public transport, work in teams, work with screens for long hours without getting a migraine.

I was interested if any of you have experience regression post-diagnosis?

Parents
  • Let me tell you. I have clear and vivid memories of being a happy and joyful little child. I also remember going for my first Vax and being scared to death. I also remember after the event being sick and having a fever all the time. I also remember a dark cloud of depression coming over my head at the time that is still with me today. I can still feel it right now it never leaves me. It's like everything is altered and I am living in some kind of weird shadow world where I am not sure what is real and what is not. I am aware that my brain is altered. I have accepted this fact now. Headaches, light sensitivity, tremors, myoclonus, anxiety, Allergies I get all the classic neurological stuff associated with autism. I also have a diagnosis which I obtained a few years ago which provided me with the opportunity to develop a deep and powerful insight. I like nation autistic society. They're okay some things that they do I do not agree with but I get the impression that they mean well in their intention. 

  • The past few years have been really difficult for myself and other members of my family and I feel we are not coping as well with life as we were before the pandemic. Withdrawing from many aspects of life during lockdowns etc suited us on one level, but the isolation made ‘going back’ to ‘normal life’ really hard. I got really ill with Covid too - and was left with ptsd and really severe anxiety because of that. It’s taken 3 years to get back to anything even close to normal for us (as normal as we can be anyway!). But we get so easily overwhelmed by everyday things that a lot of people find easy. I in particular find being around lots of people and crowds really difficult. We found getting a diagnosis to be a positive thing - but the pandemic had a really bad impact on us - and we are still struggling with the effects of that. 

Reply
  • The past few years have been really difficult for myself and other members of my family and I feel we are not coping as well with life as we were before the pandemic. Withdrawing from many aspects of life during lockdowns etc suited us on one level, but the isolation made ‘going back’ to ‘normal life’ really hard. I got really ill with Covid too - and was left with ptsd and really severe anxiety because of that. It’s taken 3 years to get back to anything even close to normal for us (as normal as we can be anyway!). But we get so easily overwhelmed by everyday things that a lot of people find easy. I in particular find being around lots of people and crowds really difficult. We found getting a diagnosis to be a positive thing - but the pandemic had a really bad impact on us - and we are still struggling with the effects of that. 

Children
  • Yeh screw society. I don't like this world it's not friendly enough.

  • Sorry to hear that too. Keep the faith. I find that when I look to animals they help to both calm me and restore my faith in living as part of nature. They never change, it's only society that does all the problem causing!

    For me lockdown was tough, but also meant remote working began, which all but cured my IBD! Now, as everyone returns to commuting to work (in a climate crisis, this still BLOWS MY MIND! Humans are simpletons!) I am similarly faced with pressures to travel, be surrounded by crowds, and so I am stuck with how to make next steps without confronting those realities.

  • That's sad sorry to hear that. Lockdown was bad. I didn't like it much