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What has helped you?

Bluelyn

I’ve recently joined the forum and I’m hoping to hear honestly from others who were diagnosed as adults.

I was late diagnosed after reaching a point where things became unmanageable. I’m currently experiencing:

  • Significant autistic burnout
  • Executive functioning difficulties
  • Severe noise sensitivity
  • Psychological distress when engaging with people
  • Inability to go out due to distress triggered by noise

I’ve paid privately for a sensory assessment, which gave workplace recommendations (for when I’m well enough to return) and suggested an auditory hyperacusis assessment. I’m not sure what practical support that would actually unlock.

  • I’m also paying for private therapy because my local NHS offer appears limited to CBT.

Recently I listened to an episode of The Hidden 20% podcast where it was suggested that NHS services often only step in during crisis, and that unless someone is actively suicidal, meaningful support can be hard to access. That resonated with how things currently feel.

My question is this:

  • Has anyone here actually received ongoing, practical support after a late autism diagnosis?

Not crisis intervention. Not being redirected elsewhere. But real, sustained support that helped you stabilise and rebuild functioning?

Many of us seek diagnosis because we are already in a difficult place. Yet once diagnosed, it can feel as though services say “we don’t treat autism.” But the difficulties that led to the assessment remain. Burnout, shutdowns, sensory overwhelm, functional collapse.

What has helped you?

  • Did anyone receive NHS support beyond CBT?
  • Has anyone accessed occupational therapy, sensory integration, or community autism teams?
  • Did an autism diagnosis meaningfully change your support pathway?
  • What practical steps helped you move from burnout towards stabilisation?

I’m trying to understand what is realistically available, and whether I should continue self-funding everything (as much as I can) or if there are avenues I haven’t explored.

Thank you for reading. I’d really value hearing real-world experiences.

Parents

  • No nothing at all, I've asked, I tried the local autism support service for help and they were totally useless, I actually think they're a waste of public money, all they seem interested in, is are you getting enough benefits?

    Any other stuff they do is all via zoom type calls, which I have no idea or equipment to use and when I asked if they could help me find any help with tech, they sent me a list of places to try, most of which were only available in England, some only in London, I ended up with two women sat in my kitchen with a lap top showing me which smart phones I could buy from the local argos, no help on learning how to use them.

    I've never heard of a sensitivity test, where do you go for them?

Reply

  • No nothing at all, I've asked, I tried the local autism support service for help and they were totally useless, I actually think they're a waste of public money, all they seem interested in, is are you getting enough benefits?

    Any other stuff they do is all via zoom type calls, which I have no idea or equipment to use and when I asked if they could help me find any help with tech, they sent me a list of places to try, most of which were only available in England, some only in London, I ended up with two women sat in my kitchen with a lap top showing me which smart phones I could buy from the local argos, no help on learning how to use them.

    I've never heard of a sensitivity test, where do you go for them?

Children