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Post diagnosis

Deleted user
over 1 year ago

I’ve read a few bits since being here that have got me thinking today. Although I’m glad I found out I’m asd, and it explains so much of my life, I’m also angry because honestly I’d really rather not be. I’m also starting to think it’s taking over my life… Everything I do now in the back of my head it’ll be ‘thats the autism’. So part of that is well it’s okay, you don’t need to feel bad about not fitting in anymore or the meltdowns, but now I can’t get it out of my head. It’s almost like I’ve become stuck. Constantly reading about it, assessing things I do, knowing that if I don’t want to do something I don’t actually have to because of it. That in itself is becoming another addition that’s contributing to the burnout, which is ridiculous.

Anyone else feel like this? 

Parents
  • over 1 year ago

    Having been diagnosed just after Covid in 2021 here in Manchester and now age 52, I’ve still not been able to find (relevant) sources of post diagnostic support and I’m still no nearer to knowing for sure what I’d want nor need from such support - maybe (as my family in Ireland keep banging on about)  a live-in carer and/or residential placement, work buddy, coach, autism boot camp and travel chaperone for long distance travel over 20 miles (at least in the short term) would be a starting point, but I honestly don’t know - the fact that most autism support services are mainly geared towards children means a better level of and access to support for them, but for us autistic adults, regardless of an assessment as to the level of our autism as adults, as we approach retirement age, we are cut loose and left adrift to our own devices - it reflects how mental health supports and funding on the NHS is always the poor relation - and even those (expensive) private supports still require red tape, like GP referrals, despite full reports being fully available - if an ageing population with autism continues to grow and if we still experience this form of disability discrimination by effective denial of proper supports in our later lives, what kind of quality of life can we possibly expect to have in our later years? 

Reply
  • over 1 year ago

    Having been diagnosed just after Covid in 2021 here in Manchester and now age 52, I’ve still not been able to find (relevant) sources of post diagnostic support and I’m still no nearer to knowing for sure what I’d want nor need from such support - maybe (as my family in Ireland keep banging on about)  a live-in carer and/or residential placement, work buddy, coach, autism boot camp and travel chaperone for long distance travel over 20 miles (at least in the short term) would be a starting point, but I honestly don’t know - the fact that most autism support services are mainly geared towards children means a better level of and access to support for them, but for us autistic adults, regardless of an assessment as to the level of our autism as adults, as we approach retirement age, we are cut loose and left adrift to our own devices - it reflects how mental health supports and funding on the NHS is always the poor relation - and even those (expensive) private supports still require red tape, like GP referrals, despite full reports being fully available - if an ageing population with autism continues to grow and if we still experience this form of disability discrimination by effective denial of proper supports in our later lives, what kind of quality of life can we possibly expect to have in our later years? 

Children
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