Late diagnosis regression?

I am a 54 year old male who has been diagnosed in the past year.

I have struggled silently all my life with the feeling of being an alien on this planet.

I look like you, I sound like you, but I am using all of my energy trying to be like you.

Since I got my diagnosis I have gone through a lot of emotions, such as being angry at myself for leaving it so long to ask for help, and angry at the education system for not helping a child who was clearly needing help all those years ago.

When I received the diagnosis of autism I was instantly relieved and felt a huge pressure lifted from my shoulders, but that has now changed to becoming more socially isolated and anxious.

I have heard of "post diagnosis regression" and was wondering if any of the community had heard of it or suffered from it?

  • It's going to take time. The thing that's helped me come to terms with it had been talking to others like me. Listening to audiobooks, reading personal accounts, following autism/ ADHD accounts on socials. It can help us to figure things out, but it will take time, so try to be patient if you're able to. Keep talking, listening and being mindful of thoughts and feelings. It'll start to make a bit more sense.

  • I have just read your post and although I had never heard of the post diagnosis regression I have definitely experienced it in a big way it feels like my brain is all clouded 

    I feel so angry about the whole process let down by the schools and it just feels like my brain decided to give up since I was told that I have autism 

    Is there any advise anyone has to pass over on how to deal with this ??? 

  • autism is a dynamic disability and our abilities and capabilities can naturally fluctuate depending on stress, burnout, support and so many other things.

    Ooooo THIS.

  • hi derrick!

    this is such a real and valid thing and I really feel for you. it takes courage to talk about it as I feel it is a lesser talked part about autism, especially within late diagnosis. what I’ve seen in the community, read and experienced myself, a lot of autistic people do go through this and it can feel scary or disorienting. I know for me skill and mental regression has been a huge issue since my diagnosis just over a year ago.

    I’ve experienced a lot of regression in certain skills and even my general mental stamina. I’m honestly a very different person than I was before my diagnosis and that’s been hard, especially as I realise how much of who I was came from years of masking and pushing myself beyond what was sustainable.

    it can feel like things are breaking down, but I’m trying to see it as the masked version of me falling away and space being made for the real, autistic me underneath. I’ve also learned that autism is a dynamic disability and our abilities and capabilities can naturally fluctuate depending on stress, burnout, support and so many other things. that understanding helps me be gentler with myself when things get hard.

    you’re absolutely not alone in this and I hope you can be gentle with yourself too. x

  • Exactly, you then live to fight another day.

  • This is such good advice. We were planning to do a trip to a couple of shops at the weekend. After the first shop I was done, and I said to my partner that I'd rather go home. She completely understood and can read me very well. She knows when my energy has gone and being autistic herself she knows it's best to head home to recover at that point. 

    Always listen to what your body is telling you. It's rarely wrong, and there's always another time. 

  • I had just turned 54 when I finally went to see my GP for an autism assessment referral. I’m 57 now,  I mourned the  autistic child and adult for a long time, obviously in the 70’s and 80’s little was known about autism, at school it would have been like painting a target on your head. Everyday was just survival and we survived.

    I’ve processed all the situations and events throughout life and now realise that they are weren’t my fault. I have thought about all the what ifs and do wonder what I might have achieved in the world. I decided in the end to change how I live, I obviously don’t know your situation, I spoke to my partner and we sold our family house of 20+ years and moved to the country. 
    I decided that if I have 20 good years left then they must count, i have one friend and that’s more than enough, I said only today in the supermarket, “can I leave now please?” Limiting what I’m comfortable with is much less stressful. My wife knows it’s better for me to just go and sit in the car than me shutting down. 
    I’m longwindedly saying adapt your life, I tried for years to keep all the plates spinning, it led to a long burnout,  I realised that the plates will always eventually fall down.

  • Wise words. Thank you.

  • I'm currently going through the diagnostic process for autism but I've had an idea that was autism level 1 for a few years, and self diagnosed as AuDHD for the last 3 years.

    Since 2022 (self-dx) I've noticed that I am less willing to tolerate noisy or busy spaces, I've changed how I work and I've also cut way back on trying to socialise. I was never one for going out much anyway and have said for years that I prefer a quiet space to talk rather than shout into someone's ear from 2cm away. Now I know why.

    I've noticed that my working memory seems to have deteriorated but I think that's due to burnout, and I get tired far more quickly, also burnout. At least now I know what it is and I'm less inclined to try and tolerate it.

    If the energy doesn't feel right then I tend to leave places very quickly these days. It means that I don't meet people for coffee and a chat anymore, but now that I've accepted it I don't miss it as much.

    Initially I got mad at people from my past who could've helped me out simply by saying something, but maybe they did and I didn't pick up on it (hinting doesn't work) and how you do you walk up to someone and say "I think you might be autistic." It could end very badly, especially if they have no idea. I've forgiven them for either not seeing it or not knowing how to tell me. Here is where I am now.

  • It seems it is fairly normal.

    Once you become aware and you accept yourself, it's inevitable you'll want to be more true to yourself. You will also be more aware of how you feel and be less inclined to dismiss discomfort, plus perhaps you'll want to avoid certain things you used to put up with.

    The problem, of course, is the world has not changed and all the reasons you tried to fit in before still apply.

    I think the difference is that you can be more clever about it, using your energy where it makes most sense making your life easier elsewhere.