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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

  • Hi, I was interested in your question, though I'm afraid I'm not the right person to answer most of it, though maybe you'll get better replies! I think support will largely depend on where you live, as everywhere seems to have different services they can access, so a bit of a postcode lottery! 

    I can't speak for what NHS stuff is available -I went private for assessment as I was too afraid to speak to my GP about it, and then found out that was the only option for adults where I live anyway -unless you have a severe learning difficulties too. The report did get sent to the doctors, though I've not enquired about it, as I don't know what they'll say. Bit of a Schrödinger's cat situation -if I don't ask I won't have to hear if they rejected it or not! I'm conflict averse so it's easier at the moment.

    As adults aren't diagnosed here, I doubt there are any services, so don't think I'm missing out at least! I did try private counselling, but this was alongside getting assessed, as I was just trying to work out what was going on with me, and I stopped it after 4 sessions as talking about it was tricky, and it was more general issues, and the questions I had about burnout were kind of answered by autism anyway.

    I did recently discover NAS Scotland had a 6 week course you could do, it's more a learning things for those just diagnosed/waiting assessment or self identified and wanting a bit more info about it. I'm not sure about it though, I think I'm on the waiting list but the times are tricky if you're working/parenting, so I might not do it. That's the only helpful thing I can suggest, whether NAS has anything for you, but it's not a long term support thing so not quite what you mean?

    As for burnout, it helped that the kids stepped back from their hobbies -they needed a break too, so less running around, and I got a job which was a step down from what I was doing, and had next to no meetings, so it's allowed me to slowly build back up again -certainly a lot better than this time last year!

    Anyway, good discussion points!

Reply

  • Hi, I was interested in your question, though I'm afraid I'm not the right person to answer most of it, though maybe you'll get better replies! I think support will largely depend on where you live, as everywhere seems to have different services they can access, so a bit of a postcode lottery! 

    I can't speak for what NHS stuff is available -I went private for assessment as I was too afraid to speak to my GP about it, and then found out that was the only option for adults where I live anyway -unless you have a severe learning difficulties too. The report did get sent to the doctors, though I've not enquired about it, as I don't know what they'll say. Bit of a Schrödinger's cat situation -if I don't ask I won't have to hear if they rejected it or not! I'm conflict averse so it's easier at the moment.

    As adults aren't diagnosed here, I doubt there are any services, so don't think I'm missing out at least! I did try private counselling, but this was alongside getting assessed, as I was just trying to work out what was going on with me, and I stopped it after 4 sessions as talking about it was tricky, and it was more general issues, and the questions I had about burnout were kind of answered by autism anyway.

    I did recently discover NAS Scotland had a 6 week course you could do, it's more a learning things for those just diagnosed/waiting assessment or self identified and wanting a bit more info about it. I'm not sure about it though, I think I'm on the waiting list but the times are tricky if you're working/parenting, so I might not do it. That's the only helpful thing I can suggest, whether NAS has anything for you, but it's not a long term support thing so not quite what you mean?

    As for burnout, it helped that the kids stepped back from their hobbies -they needed a break too, so less running around, and I got a job which was a step down from what I was doing, and had next to no meetings, so it's allowed me to slowly build back up again -certainly a lot better than this time last year!

    Anyway, good discussion points!

Children
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