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?
Better than they currently are!
Seriously though. Although on the one hand I do recognise that the NHS is hugely under-resourced and massively over stretched but I also think that services for those of us diagnosed with ASD as an adult are very much appallingly non-existent! I find it ridiculous that despite my having dual neurological diagnosis with both ASD and ABI, there is no post diagnostic support available to me simply because my mental health is very stable at the moment. Surely the mental health services treat people for mental health problems, AS services should be for people with AS regardless of mental health status, they can always cross refer to mental health services if they need to. Literally this forum is my post diagnostic support and the only source of post diagnostic support that I will get so please excuse me while I utilise it to maximum effect!
So, as to what do I think adult AS services should look like: Ideally there should be support groups in every area, separate from social groups. These should be run but someone from the local autism services and should perhaps cover a different topic that people diagnosed with AS as adults may be struggling with. Even if they only ran once a month, it would be good to have the option to be able to go along, learn new information, meet other adults newly diagnosed with AS and swap ideas with both them and the person running the group.
Excellent point, it's a serious problem that you don't get any help from NHS mental health services unless you have an acute mental health issue and there's almost no support for AS itself. This forum has really been my support system post-diagnosis. I'd like to see a 'buddy' system where NT's are trained in communicating with AS people and can give advice on handling NT's in one's life (work and personal) - there are support groups to help NT's deal with AS people, why nothing the other way around?