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 to see more awareness in schools, further education and the workplace. Also definitely more support for older autistics.
What I personally feel i need:-
A co-ordinator to act as a kind of hub for me and signpost me, reliably and promptly, to services that can help with my specific needs. This co-ordinator should have been assigned as soon as autism was mooted, and seen me through the whole assessment process, advising and drawing on other services as we went along. A detailed, agreed plan would help.
Family support: For me autism is a family issue and once one person is diagnosed, others should have the offer of assessment straight away. In our case it's clearly also affected the family dynamics in anumber of ways so this should be recognised and acted upon. Too many individual issues dealt with by separate departments, with no autism awareness and no joining the dots. I don't understand how this can happen.
Psychological support: Individually tailored psychological support involving a detailed assessment and formulation of my issues,t he maintaining causes and a collaboratively constructed way forward. The support MUST be informed by autism awareness and NOT off the peg IAPT-style brief interventions.
Workplace support: Again individually tailored and bearing in mind where i am now, not what most (usually younger) people might face starting out or basic information on very obvious and relatively minor adjustments that i could clearly read about myself after a brief internet search.
A standardised process for garnering all of this support - clearly, national standards that we can expect will be adhered to from assessment to diagnosis and beyond. Again, i don't understand why this isn't already there and why, once diagnosed last year, i felt like a kind of test case when the CCG asked for my thoughts on the process to feed into their new autism strategy.
Understanding of my "high hopes" instead of an incredulous smile.