• Replies 11 replies
  • Subscribers 86 subscribers
  • Views 1576 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

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

  • 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.

Reply

  • 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.

Children
  • in reply to Roy

    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.