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 think we need a national service framework for autism, like the one for older people... It would also be great if diagnosis wasn't such a postcode lottery as well. I'm quite lucky in as much as my local MP has a first line relative with an ASC and so is quite forward thinking and pro active which is sad really because why should it just come down to MPs only having an interest in something because they have a vested interest.
Care needs to be standardised throughout the Uk, autistic people need to be recognised as having as many differences between us as NTs atvthe moment we all seem to get lumped into the same mould, for example, I can give good eye contact and have been told you cant be autistic you are looking at me.? Sometimes I want to say yea so I am are'nt I a cleaver girl!
The key word is EDUCATION. The LBTQ community would have been just labelled as gay or weird in the past but now there are several different types of sexual identity now identified which perhaps wouldn't have been even 20 years ago.
@Bookworm , I edited the point 3 in Support with your point. I will add Kitsun's and Lagrangian's input shortly.
Any more comments?
Criticisms?
Yea I've seen it thanks point 3 under the heading support. I think the up aboves in the NHS are starting to realise that any change definately needs to be bottom up, by using feedback from the likes of us as people with an ASC and staff at grass roots level.
Good job, you certainly seem to know what you are doing.
yea fine just not so good with the tech stuff.
Bookworm said: you certainly seem to know what you are doing.
I hope you are not serious .. lol
Look is everything ..:)