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Late diagnosis regression?

Derrick

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?

Parents

  • 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

Reply

  • 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

Children