• Replies 6 replies
  • Subscribers 85 subscribers
  • Views 744 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

Post Diagnostic support meeting.

Bodhisattva- neil

Friday morning I have been invited to attend my first post diagnosis support meeting with the Bristol based Adult Autism Service. 
The appointment confirmation letter states, “ we can discuss what support is available ” and “ I can decide what support I would like.”

my diagnosis is fresh, I have not really come to terms with it. 
I’m still trying to understand everything. I haven’t worked out where I may need support. 

my question for you lot would is………  can anybody let me know what support was offered to you following your late diagnosis? 
I’m in a bit of a pickle because I’m worrying I will waste the opportunity if I can’t decide what I may need and what parts of my life can be supported. 

all comments are welcome 

N.

  • Virtually nothing was offered to me. I was told I could be put on the waiting list for autism-adapted CBT, but I think I must have dropped off it, as over two years down the line, I've heard nothing. I had a bit of support via the charity sector, but nothing "official."

  • I went along to my post diagnosis support meeting, below are what I have been offered so. I have copied and pasted from an email 

    Things sound promising. Time will tell.

    Actions I have completed:
    >I have added you to the waiting list for our ‘understanding autism’ group and also for the ‘understanding anxiety’ group.
    >I have added you to the waiting list to meet with an Autism community link worker.
    >I have also added you to the mailing list, which will inform you in advance of what’s being held at the Create centre the upcoming Friday (e.g., groups, workshops).
    >I have also attached the ‘autism hospital passport’. If you’d like to fill this in and send it back to me, I can sort the rest and follow the steps so that this flags up if you ever go to hospital and staff will be more aware of your condition.

  • I did an online assessment which was from a private company but funded by the NHS.  They offered an online "support group" which ran once a week for six weeks.

    I was excited by the idea, but it just turned out to be someone reading off a PowerPoint at us for 45 minutes.  About a bunch of stuff I'd already learned in the years up to getting diagnosed.  The lady leading leading it said that she had to get through all the information, and there was very little time for any kind of discussion.  Also I had to correct them on a few things that they got wrong!

    It is still pretty fresh for me too, and a lot to process.  Hopefully when they give you options you'll know if it's right for your situation.  Unfortunately it seems that NTs and professionals don't always have the right ideas about what we actually need.

    Fingers crossed that it's helpful for you though.

  • I’ve not had any post diagnostic support since my (online) diagnosis 

  • in reply to Martin

    Martin, I guess it’s a post code lottery.

  • Nothing, no support of any kind; I cannot even find a local autistic social group.