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?
After reading through the posts on https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15461/if-we-could-design-it-ourselves-what-would-as-services-look-likeand https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15479/forum-contents-non-techy---if-we-could-design-it-ourselves-what-would-it-look-likehere comes my War & Peace and hopefully broken down for easy reading to everyone:-
Content and Structure
Schools and Services
Visibility
Eccentric1 said:I feel these pages could be laid out better and make use of some further voluntary advocates for the Support Groups, Social Groups, Befriending and Mentoring. What better way than to collaborate with those of us with the knowledge, skills and experience of the condition.
Do you already have an idea, a visualisation of hat it could look like?
This is so inspirational, people with different expertise coming together.