Published on 12, July, 2020
My 1:1 post diagnostic support isn't exactly hitting the mark. I accept it isn't the same as counselling but I expected some strong practical ideas and my expectations may be too high.
I have 4 1:1 appointments, commissioned by the NHS with a local charity. So far they seem very structured around what the support worker has to impart - showing me a few videos, telling me about autism, checking which of these factors related to me and chatting about their own family experiences. Pleasant enough but i am desperate! To me it feels as though this worker has maybe been on a short course to deliver very basic information and some thoughts on autism, perhaps designed to allow the individual to process some of their thoughts on their diagnosis. I, however, wanted to use the diagnosis as a key to unlocking advice and guidance on dealing with the effects of autism in my family, improving family dynamics, maintaining a benefits claim for someone who won't interact with services (incl. GPs) and supporting my adult sons (with social skills and possibly further education and work - on the more distant horizon). At the last session I explained my position and the worker seemed to zoon in on me feeling guilty, as if that was mainly what I was conveying. I'm not sure i do feel guilty, although i do have some regrets. I wish we'd known we were an autistic family then I could have enlisted help sooner, of course. But now I simply want to make up for lost time by enlisting appropriate support for my family.I want the worker to stop showing me videos and describing autism to me - i've already read extensively and seen most of the videos too. Also to stop sharing personal anecdotes - I'm not an uncaring person but this is MY time. Could they do perhaps do a quick 360 degree assessment then focus on the challenges I actually face? Would it be reasonable for me to ask this? Or is this actually all they've got and i would be being rude? What should post diagnostic support actually look like? i'm not sure I know. i do know that my situation is apparently complicated by me interpreting my diagnosis as more of a family diagnosis rather than simply an individual one (not without reason as I only put myself forward for assessment in order to better understand what has been going on in our family for generations plus my younger son already has an informal diagnosis and my older son has just been diagnosed too). Overall, shouldn't this be about my support needs rather than what they imagine will generally be needed? Maybe I should take my own 360 degree interpretation to my next meeting and see what the support worker makes of it?
Thank you for all of your thoughts on this.
Given the various shortcomings of the system, its chronic underfunding and the limitations of what is currently offered, I think I will just try to get my bearings and take what I can from this service. This probably means paring down my list to just 2 or 3 main concerns for the next appointment and hoping to focus on these. For anything else I will ask for signposting and, at the same time and as my own knowledge and experience increases, seek out more specific private help.
More importantly, and over and above that, though, I think I'll keep on developing our own "in-house" expertise because of course we are the experts on ourselves. It may be that I also need to start gathering material for our own reference as there doesn't seem to be much on the family aspects of autism (although of course there are a number of books for helping parents of younger children and teens). But I'll see what develops. Although I can see the effects of autism going back over at least 3 generations, we've only started getting formally diagnosed in the last few months. So it's early days in terms of that full awareness coming in.