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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

  • I was diagnosed about 5 months after taking early retirement. I sought an assessment as I had realised that I was autistic and needed professional validation for my peace of mind. I was not in any sort of crisis situation. I reasoned that I was unlikely to get any government support as I had reached the age of 59 without requiring it, or even knowing that I had any sort of neurodevelopmental condition. Therefore, I did not apply for any. I looked at what was available locally in the form of 'community support' and, if you are not a child or requiring high levels of day-to-day support, there was essentially nothing. There was a sort of social club for autistic adults, run by the local council, but it was limited to 30 places. Seeing that I live in a town of around 100,000 and autism rates are between 1 in 36 and 1 in 100, this seemed woefully inadequate.

    I found a therapist who was not too far away and specialised in autistic clients. I toyed with the idea of paying for some sort of therapy course, but never having sought any medical help for anything other than physical health problems before, fear of the unknown and autistic inertia intervened and I did nothing about it.

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  • I was diagnosed about 5 months after taking early retirement. I sought an assessment as I had realised that I was autistic and needed professional validation for my peace of mind. I was not in any sort of crisis situation. I reasoned that I was unlikely to get any government support as I had reached the age of 59 without requiring it, or even knowing that I had any sort of neurodevelopmental condition. Therefore, I did not apply for any. I looked at what was available locally in the form of 'community support' and, if you are not a child or requiring high levels of day-to-day support, there was essentially nothing. There was a sort of social club for autistic adults, run by the local council, but it was limited to 30 places. Seeing that I live in a town of around 100,000 and autism rates are between 1 in 36 and 1 in 100, this seemed woefully inadequate.

    I found a therapist who was not too far away and specialised in autistic clients. I toyed with the idea of paying for some sort of therapy course, but never having sought any medical help for anything other than physical health problems before, fear of the unknown and autistic inertia intervened and I did nothing about it.

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