• Replies 12 replies
  • Subscribers 84 subscribers
  • Views 397 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

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 lucky enough to be diagnosed by BASS who ran a variety of post diagnostic support. For me, I did a 'Being Autistic' course which was in a group and looked at many difficult areas of autism and how to manage it a bit better. I also had some 1-2-1s to prepare a hospital passport and prepare for some sensorily difficult medical appointments. There were also online drop in problem solving sessions, a managing anxiety session. This was all pretty helpful, and the hospital passport still gets used when I have medical appointments. This was all NHS.

    I also got DBT from my university (this was related to a crises episode) which was exceptionally helpful, and I credit with the large improvement I've had in my mental health in the last few years. This was also in a group, and I was the only autistic person, which was an interesting experience but the team delivering it were very happy to adapt things where necessary. 

    As I'm at university I also get an autism mentor and study skills advisor through DSA, but these are very uni focused, I understand that access to work sometimes provides a similar thing. 

  • in reply to Fibonacci Squid

    Oh that's good you had services that's helped you 

Reply Children
No Data