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...'
I live in Thurrock and I got no post diagnostic support due to my age as I was 51 years of age when I got diagnosed with ASD at the Basildon hospital community resource centre in 2014. It should be given support that you want and need and that there should be an offer of a befriender and mentor. It seems like I have not missed much as it seems there is post diagnostic support that is tailored to the individual.
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.
I agree it would need to be individually tailored. My impression was that this support worker would have shown the same videos irrespective of who was sitting in front of them!
My hopes are high but it seems to me that a full assessment from the autism team should be fed into the processor providing 1:1 support that focusses on the concerns of the individual. I don't think we're anywhere near that scenario unfortunately.
Hi. I only had one post diagnostic appointment. That’s it. It was sort of useful. But been lost for abit.
This makes me think i have very high hopes. I wonder how on earth they plan and structure such appointments if there's only one.
I was given a booklet with lots of info. And mainly sign posted to other organisation. Possible plan of action for future. Haven’t done it . Guess why?
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..
I’ve had excellent support so far. None of it was post diagnosis support, it was support that my job centre coach arranged for me.
My first support worker was from the local council, who had little to no awareness of autism but she was amazing, and we’re still in touch.
My second worker was from autism plus and again, she was great, but the sessions were limited to 16 weeks, I think it was, though she did give me an extra two weeks.
And I now have a new worker from autism plus but this time, the support is for at least 18 months and she’s currently trying to up my sessions from one to two hours, because when I first get to the session I have a need to unload everything about my week on to her so she wants the first hour to be for that and the second hour, for the work she has planned, which I am finding is as equally important as my off loading.
I also have two workers at REED that I see, who are also really helpful and because I said I’ll never work for anybody again, one of my workers is their self employment expert, who I haven’t started working with yet. I only got switched to him last week after they accepted I will never work for somebody else again in my life, I would rather die than do that, unless it’s a more casual arrangement, for example, I like working in coffee shops so when I’m travelling other countries, I like to work part time as a barista.
Of course you have to be open and honest with your support worker, otherwise how can they help you? And why would you care if they thought you were being rude? I’m always rude to my support workers in the beginning as it takes me a few weeks to warm to them and I’ve been horrendous to my job centre coach, thank god she has previously worked with autistic people and has a step daughter who’s autistic or I don’t know where I’d be now ~ definitely kicked off of benefits and barred from entering the job centre. Do you want help or do you simply want them to think you’re a nice person? Maybe you’re not ready for support just yet?
It sounds like you simply want to be in control of the whole thing, which is as far away from getting support as you could get. How do you know if it is support with your family that you need? And it that’s the case, seek out family support, your autism support worker isn’t there for your family, they’re there for you, to help you to come to terms with your diagnosis. If you’ve already done that, as you said you have, why are you even there?
I would say the same as your worker did, that you’re either feeling guilty or you have an out of control obsession with your family. It’s like you think you are responsible for all of them, which is arrogant and impossible to solve. What makes you think you are responsible for your family? Maybe you just want to control them? You sound like you want to control your support sessions but support doesn’t work like that. Or maybe it’s just the wrong support. Maybe you do need dynamic family support and if so, autism support is not for you, family dynamics is a whole different thing. But before you get any support, you might want to question why you’re there. For them to say you’re a nice person? It’s weird that you wouldn’t want to be seen as rude, which indicates you’re more interested in people having a good opinion of you. When you don’t care about that, you might be ready for support but from what you’ve said in this short post, it doesn’t sound like you want support, more like you want somebody to simply agree with you and go along with what you want.
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?