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?
Why can’t they give us a form after diagnosis:
Do you need a carer to go out shopping etc with you tick
Do you need someone to check on you in the day tick
Then you get the support. Instead of dealing with a muggle with no idea.
That's a really great idea and I reckon it would be very cost effective as well. It's a similar thing to PIP, why don't they give it to everyone who applies and review it after one year to see what benefit it has made to their life? I love the tick form following diagnosis though and it would save sooooooooooo much heart ache and probably lives as well. It is such a good idea. Genius in fact.
I live at home and haven’t had an assessment. We tried with my mum who has physical problems and they came across as they know everything about her problems. Which they didn’t. So didn’t bother. We help one another.
muggles! So we have lack of trust in them. Tbh it took 5 years to get a disabled bay.
Yes, I have worked with people like this, so I know exactly what you mean. However, you can get an advocate to support you through the process and I’m not sure if you still can, but you used to be able to do a self assessment but an advocate would look into that for you. Local authorities have to make independent advocates available to you, free of charge, or you can get your own from disability rights groups etc. You have good cause to have one, due to your previous experiences and trust me, your experience is real and not uncommon so the advocates will know exactly what you’re taking about. It would be a shame to let some high and mighty know it all (not) prevent you from getting what is rightfully yours ~ the support you need to live your best life. And these days, the only restrictions to what you can or cannot use your money on (personal budget) is on things that are illegal. And when you are supported by somebody like an advocate, it’s not so bad going through the process. I wish I lived closer to you, I’d help. I was an excellent social worker and always got my clients what they needed but I also know how social workers do also deny people what they need through lack of being able to do a thorough assessment of their needs/situation. If you do try again, do get an advocate. You can contact your local social services and ask for the number of the local independent advocacy service.