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?
That does sound unhelpful if it's not covering what you want to focus on. I had my post-diagnosis follow up a couple of days ago (it's an ongoing weekly advice service so you can book 1-to-1s in the future if you want) and after telling me about the services they offer (they have a few support groups) the focus was on what I wanted to talk or ask about and they were happy for people to come to them with any issues with anything tangentially autism related. I pretty much feel I'm well versed on autism at this point, so we discussed ideas for generally dealing with anxiety and he gave me some advice about work/uni 'reasonable adjustments'.
I totally agree that yes, it should be about what you actually need and not what they think you need otherwise it's pretty useless. I would be prepared for the fact that maybe it is all they've got-they might not be the best people to cover all of what you need at least-but I don't think there can't be any harm in asking and I wouldn't worry about being rude-you're right, it's your time and it is meant to be for your benefit. You could maybe preface it with 'I appreciate the information so far but...'
Yes, I think I need to be open and honest with them. I just have the growing fear that there isn't really anything that looks as this from the family perspective.
Years ago, when I was in my teens and twenties, I could really have done with extra support relating to university and the workplace. But now in my mid fifties my needs are very different. My impression is that they are prepared to advise on individual accommodations or perhaps help with anxiety, but not family or intergenerational matters. And, as I've aged, these have really come into the foreground for me.