Frustration with 1:1 support - how should it be?

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?        

Parents
  • Having recently been assessed for support, I found they are only really interested in 'supporting' (manipulating and abusing) very low functioning people.   Anyone with a bit of brain is too difficult for them so they just fob you off with no real effort applied.  You just get put in the 'too hard' file.

    They really don't want to have to earn their money or face someone who will call out their incompetence - and they will work VERY hard to avoid it..

Reply
  • Having recently been assessed for support, I found they are only really interested in 'supporting' (manipulating and abusing) very low functioning people.   Anyone with a bit of brain is too difficult for them so they just fob you off with no real effort applied.  You just get put in the 'too hard' file.

    They really don't want to have to earn their money or face someone who will call out their incompetence - and they will work VERY hard to avoid it..

Children
  • Yes, i am getting the feeling that they don't know what to do with me.  I hope this feeling will be dispelled as the work goes on, but it doesn't feel like a promising start.     

  • This hasn’t been my experience and I am by no means an easy case, in fact, I’ve told my job centre worker several times, she definitely deserves a medal for how she is with me, in fact, I’m always horrible, argumentative and down right rude when I get a new support worker, to start with, as it takes me a while to warm to them, but they have all seen beyond that and the relationships have really grown. All my support workers I would say have worked VERY hard to support me. My job centre worker has definitely gone over and above what could be reasonably expected, as have all my workers really. However I was in desperate need of help and I am always honest and open with them so maybe that makes a difference and I am always grateful for any support I  am given, whether it helps or not, people can only do their best and I am always grateful for their input, even if it doesn’t work for me. My psychiatrist who doesn’t normally offer after support has also been amazing. Whenever I phone him he gets back to me and he always sees me. He gave me his mobile number as he said he was easier to contact that way rather than going through the receptionist. He even answered my call when he was on holiday, and he spoke to me and gave me an appointment for the first week he was back at work. I have had support workers and doctors etc that couldn’t help me, in the past, and I was grateful for their honesty and input. Just because they can’t help me, it doesn’t mean they’re no good at their job or whatever, it just means they couldn’t help me and I am always grateful that they try. 

    Maybe you have to be open minded and really need support to get it?