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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

  • Yes actually, well mostly. In brief:


    The autism team helped me to successfully apply for a Blue Badge and also with difficult DWP forms. They also assisted when I was needing to complain about a hospital  

    DWP themselves have been polite and supportive, respecting my communication needs  

    I have used the diagnosis document to secure very practical and meaningful reasonable adjustments in primary nhs care. Im back in regular contact with my primary care provider who have agreed that I can completely avoid their triage system, no phone calling necessary I just send an email to the practice manager, not even necessarily saying what is wrong, and I am emailed back a double appointment. I have a named dr from my own ethnic group. All my appointments there are double now. Ive secured four referrals to secondary care regarding my mental health, allergies, hearing and chronic pain (fibromyalgia). In the light of my feedback they have issued additional guidance about clarity to the reception team. 

    Occupational therapy were in touch quickly but nothing they could offer was helpful.

    In our family it has given me a substantiating message and this has helped me to be taken seriously re my health, with for example my sensory needs around plants and trees, lights and noise, being fully accepted. 

    I do see from the many other negative experiences how unusual this is, all I can say is the diagnosis gave me a powerful sense of validation, and of my rights as a disabled person which I have self advocated powerfully for  

    AnA

Reply

  • Yes actually, well mostly. In brief:


    The autism team helped me to successfully apply for a Blue Badge and also with difficult DWP forms. They also assisted when I was needing to complain about a hospital  

    DWP themselves have been polite and supportive, respecting my communication needs  

    I have used the diagnosis document to secure very practical and meaningful reasonable adjustments in primary nhs care. Im back in regular contact with my primary care provider who have agreed that I can completely avoid their triage system, no phone calling necessary I just send an email to the practice manager, not even necessarily saying what is wrong, and I am emailed back a double appointment. I have a named dr from my own ethnic group. All my appointments there are double now. Ive secured four referrals to secondary care regarding my mental health, allergies, hearing and chronic pain (fibromyalgia). In the light of my feedback they have issued additional guidance about clarity to the reception team. 

    Occupational therapy were in touch quickly but nothing they could offer was helpful.

    In our family it has given me a substantiating message and this has helped me to be taken seriously re my health, with for example my sensory needs around plants and trees, lights and noise, being fully accepted. 

    I do see from the many other negative experiences how unusual this is, all I can say is the diagnosis gave me a powerful sense of validation, and of my rights as a disabled person which I have self advocated powerfully for  

    AnA

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