Published on 12, July, 2020
I got a formal diagnosis this year - 25 years after taking the AQ test (39) and nearly 60 years after I was first referred for assessment as a child - it's been a bumpy ride! I've had some amazing help from my local authority AS services around employment but I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults. It also seems a bit of a lottery regionally.
Meanwhile, we have researchers cruising the forums looking for input on the latest app or conference. Again, none of them seem particularly keen to do more than get input on their own ideas - we don't get 'invited to the table'. All the apps I've seen look as though they're for children. The diagnostic process is designed for children. Services seem to be very vague on high-functioning adults?
This NAS forum has been a life-saver in floundering around post-diagnosis and it feels ungrateful to moan - but it's very far from perfect for HF AS adults and, again, there seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
So maybe we need to be a bit proactive?
What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?
I made a slack workspace and a channel for the autism strategy (we can make more channels for other things):
Follow the invite link here: https://join.slack.com/t/beameup/shared_invite/enQtNjI1MDg4MTc5NjgxLTkwOTBkYzc1MjY2ZGYxZjBjYWQyNGMxMWI2YjJjZjBjOGJiNGIxNDVhYmRmOGQzMzFmZmViODhiMTk4NWE2OWU
I pinned the link to the strategy and also put @TinyExplorer's summary into a google document set for us all to edit and pinned the link in the general channel on slack. Thought it would be easier than trying to edit it here? Although we can edit it, I think should start with comments/suggestions rather than editing the actual text at this stage?
Should we maybe try to make a time to 'meet' in slack and discuss it in 'real time'?
What do people think about the idea of feeding into the autism strategy consultation as a starter?
Sorry, What is Slack? I'm seeing so much computer speak and don't have a clue what I'm reading. I'm a bit of a computer dyslexic. lol
Snap!