I'm shaking my head at all the stories of no support - I'm honestly can't find words

The sensory screening I had done 

https://www.otworks.co.uk/company/sensory-screening/

I got a report detailing my struggles in each of the 8 senses and I have issues with all apart from smell, 

My report says severe sensory processing difficulties and understanding each section recommendations, with quite a few recommendations for the workply

No nothing at all, I've asked, I tried the local autism support service for help and they were totally useless, I actually think they're a waste of public money, all they seem interested in, is are you getting enough benefits?

Any other stuff they do is all via zoom type calls, which I have no idea or equipment to use and when I asked if they could help me find any help with tech, they sent me a list of places to try, most of which were only available in England, some only in London, I ended up with two women sat in my kitchen with a lap top showing me which smart phones I could buy from the local argos, no help on learning how to use them.

I've never heard of a sensitivity test, where do you go for them?

Thank you for your moral support 

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. 

• 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 

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. 

I'm paying for as much as I can privately, it's been hard finding private services to help, everyone offers diagnosis, but actually support, while that is almost non existent 

Yeah you need to look after yourself at the end of the day. It would be great if you could get that on the NHS, and promptly, but if you need it now, going private for it might be the only option anyway! (And not have to wait months/years)

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

Thank you for your reply, I've paid for a private sensory assessment because GP said I couldn't be referred by NHS and the report recommends everything I've already been doing, but has good accommodations needed in the workplace to show a future employer 

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. 

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!