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?
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..
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.
How does anybody know what to do with somebody who just won’t listen? You refuse to listen to anybody who doesn’t agree with you and if you only listen to people who agree with you, how can you ever be helped? It’s more than a feeling you have, it’s hard to know what to do with somebody who refuses point blank to listen.
Maybe they haven't got the skills to say that to you or maybe they are trying to tell you in a more subtle way, not realizing we don't do subtle, who knows I don't know. I just know you have been grappling with this same problem for a while now, with little success, so it is logical, to me, to approach it from another angle. And I don't know, I haven't got all the answers, it just seems to me, from what I've read on here, that you're in an autistic black and white rigid obsessive compulsive thinking cycle, which is what we do, it is how the autistic brain operates.
And for me, I have had to take on other people's views etc, since getting my diagnosis I have had to learn to take chances and see if other people's views etc are right and even if they don't turn out to be, at least I get out of the obsessive black and white thinking that I can't get out of by myself, for the life of me. I value all people's input as it helps to expand my mind and awareness, I don't see things as right or wrong, I just know, that if I don't get out of the rigid thinking I go insane and end up wanting to kill myself, like I did recently and when I snapped out of that, I could see that my thoughts were beyond insane yet at the time, I thought they were the most rational and normal and well thought out thoughts that could ever be.
Family dynamic therapists are not common and although I am aware of a charity that at least used to operate out of London, working with family dynamics, you generally have to pay for it as it is long term work and very hard going on the therapists. Social workers get maybe one semester on learning about family dynamics but we are encouraged not to get involved with that sort of thing when we're in practice - not that I ever took any notice of what we were supposed to do and it's not always the same in other countries, so I have been involved with family dynamics to some degree but to really get any where with it and you need a lot of time, I'm talking years.
I wasn't offered any after care support after I got my diagnosis, it was my job centre work coach or whatever they're called who said that I needed help not a job and she got me all the help I've got and with the psychiatrist, I simply phoned him when I was going out of my mind and looking back, he was probably so attentive to me because I was often suicidal and I would get into the obsessive thought patterns that I couldn't get out of my myself and he would just say one thing and it would snap me out of it. I still struggle to get out of it by myself and that's why I end up being suicidal so often but with practice, I'm getting better.
So all I was trying to do was to help you see things from a different angle, but if you're not just in some autistic black and white thinking then don't take any notice of what I'm saying. I'm only trying to help not argue or say that anything you're doing is wrong, I just know how terrible I feel when I'm in that cycle. I never intend to upset anybody or tell anybody they're wrong when I say things, I just try to help and other people's points of view etc always help me even if they're totally wrong as they somehow help me to see things in a bit of a different way.
I can't imagine what it must be like to have an autistic child or to have them not doing well, as a mother, I can't imagine anything worse and you're handling it far better than I know I ever could, truly, I have so much respect for you and I know how hard you work for your family, it saddens me greatly to hear of other people's distress so I try to help but I know the way I see and experience the world isn't always how other people see it and that can cause misunderstandings and distress so I hope I haven't made things any worse for you and as I said before I sincerely hope you get the help you need, asap, as it's long over due and I know it's not through lack of not trying.
Autism still isn't widely understood so specific autism support can still be sketchy across the country and I get most of my support from this site, my autism group, YouTube and books on autism and that's why I'm passionate about changing that and that's why I'm going to focus my working with autistic adults and take it from there but I also have another not for profit idea as well, to support autistic adults across the country, I'm just not quite ready, health wise, to go forward with that just yet, but I will be soon.
As always I wish you all the best and I do understand and hear you and others on here also understand what you're going through, I know it's not easy and if I did have a magic wand I would definitely wave it your way and I know that professionals and support workers, who are not autistic, don't and can't understand us in the way we can understand each other but for now, we have to work with what we've got and put our trust in the people we get to support us, even if it turns out to be not the right advice or whatever, sometimes we just have to do something different for the sake of it to help bring us out of our catastrophic black and white rigid thinking patterns that we often don't know we're in, because they've been so much a part of our lives that we think it's us, but it's not, it's just our autistic brain doing the thinking but we can change that because we are more than just our brains.
Anyway, all the best and I hope that you at least get some support and comfort from your husband and family X