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 would like there to be available Professionals who understand ASD and actually listen, process what is actually said and guide us of all ages to develop, be independent as possible (which is probably individual) and generally for such professionals to be educated in ASD as well as other mental health/medical problems.
In the long run it’s cheaper for the NHS etc to support individual development rather than dish out psychiatric medications long term (if and when inappropriate) and benefits. Plus addiction support, obesity treatments and treatment for whatever else people do to themselves to cope or dampen the agony.
Also an acceptance that people are not ASD OR Depressed OR Schitzophrenic etc etc. I appreciate we have an NHS, but if anything could be improved I think the word might be holistic? Ie treat the whole person, not just one diagnosis. I do appreciate doctors aren’t computers, though. But it’s chicken and egg story - which came first? For example did Autism cause depression? If so, support with the autism seems the best way forward. Of course, the depression needs treating too. It’s a very individual thing in my opinion.
Plus if all the services integrated better. Psychologists, psychiatrists and developmental disorder services.
Definitely. i've fallen between the paving stones many, many times.