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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

  • Hey Blue, 

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

    • I was on the NHS wait list for over 3yrs. I saved up during this time for a private ass.
    • I was provided with a long list of reading material (then advised not to read too much).
    • Assessors provided local contacts for further help (which required more money).
    • Signposted me to local charities, close to where I was assessed of which there were few.
    • Forums, community hubs etc.

      Ongoing, practical support – no.

    What has helped you?

    • I was signposted to my local county to go on yet another waiting list for CBT by a specific Autism trained practitioner (a branch of talking therapies I suspect).
    • Occupational therapy – No.
    • Sensory integration – No.
    • Community Autism Team – Yes. I found them myself. It’s a local autism charity that hold online workshops; telephone counselling & in person meet ups. I booked onto the latest workshop it was a Team for 2hrs on Autism & Anxiety. Next is Understanding Other People. I have booked a group in person meet up at their local community hub, I think.
    • Did it change my support pathway – No.
    • Practical steps – Therapy for BPD (which it turns out I didn't have) but it really helped with my anxiety & sensory overload. I suffered acute burnout in 22 only just feeling stable in 26 (that’s my personal experience, its different for everyone). I ignored them and filled my head with knowledge, understanding and basic coping strategies through books. I know it’s cliché, but I started exercising little & often. It gave me a release from all the agitated energy I had stored each day.
    • Requesting a meds review through GP (that’s all I can & will say on meds on here).
    • Adult social care assessment via local council.
    • Other than that, talking to people on here & other forums NAS links to topics for example.
    • I've also gone on the waiting list for dyslexia & dyscalculia assessments. 

    Joey. 

  • in reply to Mads
    • I've asked for my meds to be reviewed, current medication making me angry, then I don't cope 
    • I paid for a private sensory assessment, as GP said OT don't help with autism 
    • I'm paying for private therapy, as NHS only offering CBT and IV done many times and doesn't help 
    • I've asked for a referral now I have my clinical diagnosis to the NHS autism keyworker service in my county 
    • I've asked for a referral for an auditory hyperacusis assessment 
    • I'm paying privately to go through the listening program 

    I'm trying so hard to fix myself and become functional, just today I opened the front door to a delivery driver and got so overwhelmed by the outside noise, I started spinning and almost feel over.

    I can't stay like this, I need to function so I can find another job and start contributing again and stop being a burden 

    I just don't understand why there is no joint up thinking, help to manage overwhelm means can function and contribute 

    I really need to move to a quieter area, but unfortunately my husbands parents are elderly and not right time to leave far away, means I can't escape the constant noise, neighbours, planes, traffic 

    I'm hearing everything so loud right now 

  • in reply to Bluelyn

    It makes me angry hearing how hard you've had to work, with such stalled progress. Makes me think of how hard I worked to get to the diagnosis stage. It take so much effort to advocate and fight for yourself, let alone the money. Then you get to this stage 'ta da' for which I'm sure we are both thankful for but its like you have to start fighting all over again, for something you've always had but never knew. I cant understand but I can appreciate the delivery driver as mum had a home delivery just the other day and as silly as it sounds to me I had to have a lie down as the schools were kicking out, cars etc. On a more positive side, its really given me extra determination to keep going as I didn't struggle this hard for this long for nothing. It seems you're restricted a lot by your circumstance. I hope this will change for you when the time is right. I wear my earbuds round the house which really does lessen the outside hum and constant chatter. You can do it. I just had my 2nd interview after nearly 3yrs. I never thought id get there but I did. I hope all the personal and financial investment helps towards your goals. Glad you are on here as everyone has something unique to add. 

Reply
  • in reply to Bluelyn

    It makes me angry hearing how hard you've had to work, with such stalled progress. Makes me think of how hard I worked to get to the diagnosis stage. It take so much effort to advocate and fight for yourself, let alone the money. Then you get to this stage 'ta da' for which I'm sure we are both thankful for but its like you have to start fighting all over again, for something you've always had but never knew. I cant understand but I can appreciate the delivery driver as mum had a home delivery just the other day and as silly as it sounds to me I had to have a lie down as the schools were kicking out, cars etc. On a more positive side, its really given me extra determination to keep going as I didn't struggle this hard for this long for nothing. It seems you're restricted a lot by your circumstance. I hope this will change for you when the time is right. I wear my earbuds round the house which really does lessen the outside hum and constant chatter. You can do it. I just had my 2nd interview after nearly 3yrs. I never thought id get there but I did. I hope all the personal and financial investment helps towards your goals. Glad you are on here as everyone has something unique to add. 

Children