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?
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.
The thing is, I think I've been open and honest about my needs throughout but I've been funnelled in this direction. It feels like an impasse in which I state that I want help with my parenting, family dynamics, family support and they then deliver a pre-prepared talk that ressembles a module on a course rather than the 1:1 work it purports to be. I probably have a different idea of 1:1 work in that I think it should be person-centred and determined by an assessment of their needs rather than a quick run through information about autism that they've decided in advance to give us. It's true that I feel some responsibility for my family - I brought them into this world, after all and now it seems that they're also autistic - but they are so far from thriving that this is bound to be the critical path. It's affecting my wellbeing and ability to cope in life more generally. I really find it surprising that, since autism runs in families, most organisations don't seem geared up to work with family issues. It'll certainly be back on the agenda at my next appointment. But, given that I spelled out my needs to them more than once, to me it feels as though the next step would entail me being rather blunt about it. So be it, I guess. There's a more general concern too. If the CCG have commissioned this post-diagnostic support then I'm assuming that certain standards have been specified. So far i'm not convinced these will be being met.
It sounds like you’re not open to being supported. It sounds like you know (or think you know) what you want and how to fix things, and that you just want a bit of guidance in specific areas, such as family dynamics, which a post diagnosis autism support worker is most definitely not trained to give.
1-1 support is definitely person centred but you need to be going to the right support, you don’t sound like you’re ready for 1-1 support yet, for yourself, which is what the post diagnosis support is offering, it sounds like you’re more interested in supporting your family, and if that’s the case, I can’t see anybody who could help you except for a specifically qualified family dynamics therapist.
If you came to me for help, like your support worker, I would try to steer the help back to you, by for example, by putting the focus on the guilt. I would be more concerned about the fact that your family not thriving is affecting your wellbeing and your ability to cope. That’s a huge problem which you seem totally blindsided to, probably because of this obsession you have of fixing your family. What about fixing yourself first? Of course you find it surprising that autism support isn’t more geared up to supporting families, as you have what appears to be, an out of control obsession with fixing your family, which is very much related to autism but you seem all out to refuse any help with that. It’s like the obsession has taken over your life and you can’t see that it is part of YOUR autism and if you were to work on that, you would find that not only would the obsession leave you but that your family isn’t as bad as what you think.
Yes, you spelled out your needs and they’re trying to help you but you won’t accept the help because YOU think it’s all about your family, when it isn’t, this is about your autism, and that will be clear and obvious to the support worker but you won’t allow them to help you, you’re blocking them because you think you know what’s best. If you know what’s best, you can always find books and courses on family dynamics etc or get a therapist who specialises in that area but post diagnostic support is not that. They’re not going to support your son with a benefits claim or anything to do with any of your family. It’s about you and my main concern would be how you are holding your poor family hostage and saying they are the ones affecting your wellbeing and inability to cope. That would make me shut down big time if I was your kid or spouse, you’d be lucky to get me out of bed, ever, as that’s a huge responsibility and even if you haven’t voiced this to your family, don’t think they don’t know it, they do, they are very much aware of it. If you opened yourself up, for support, even one tiny bit, it would release your family from so much stress and it would take the responsibility off them so they could at least breathe and begin to think about their lives.
You’re putting your problems onto your family and now you’re putting your support worker in the same bracket as them. Go ahead, call them out with the CCG, I’m sure you could get some complaints to stick, but you won’t be helped by that and your family will plummet even further. The best way you can help your family is by taking responsibility for yourself and stop blaming them and holding them responsible for your lack of joy in life. Your support worker deserves a medal, it sounds like they’re trying their best but you refuse to see it.
"Most people post diagnosis want simple basic awareness videos and personal anecdotes, they don't want too much too soon and if you're beyond that, why are you even going to the sessions." Again, where's the evidence and why then wouldn't the NAS website be sufficient? And why wouldn't it be spelled out in advance? The referrer knew exactly where I was personally and also with regard to asking about family issues. It just seems like a misfit. Plus for further support I would absolutely want this to be from someone trained not only in family dynamics but also autism issues because these are so closely intertwined. For this I would need someone much further down the road to advise me.
Anyway, I seriously do wish you all the best, I know what it's like to be stuck in that obsessive thinking cycle, it's not nice. Maybe watch some you tube videos on how to get out of it? There's some really great ones that really helped me to understand my obsessive cyclic thinking and how to get out of them.
Your family does effect you but you're the parent and as for your spouse, you're also an adult and can walk away from him if he bothers you too much, your children can't walk away and if I thought I was affecting my mum's well being in anyway, it would destroy me, I'd never get out of bed let alone leave my room, it would be too much for me to bear.
Years ago my sister told me not to tell my mum or dad when I was suicidal as it would make them upset, so I never. However, I have since realized that, that was not true and now I tell them and not only do they help me - not my last suicidal episode, but the one before, it was actually my dad who talked me out of it and I would never have imagined that as we have hardly ever spoken and my mum has been amazing during this suicidal episode and far from them being upset, it has brought us much closer and they feel so much better about themselves because they have been able to actually help me.
Of course you disagree, as you guessed, I wouldn't expect anything else because your autistic brain is so stuck in one mode and come hell or high water you're not going to change your mind so you could search the entire earth and never get the help you need because you're so blocked off from it. However, I sincerely hope I am wrong about this. But the autistic brain is very rigid and yours is a perfect example of that. What you're displaying is typical autistic behaviour/thinking.
Why on earth would you want to explore issues around blame and guilt? There's no blame and there's no cause for guilt but you do at some point have to take responsibility for yourself and your autism and stop projecting it onto your family, unless of course you want to continue on as you are, which is always an option and one that many people take as it takes away any room for failure on your part and it means you don't have to take responsibility for yourself which is probably the biggest thing us autistic people hate and the biggest thing we try to avoid at all costs.
You hold people hostage when you say they affect you. We all do. If I say my parents or siblings or whoever are the reason why I am not as happy or as successful etc as I think I should be then I am holding them hostage. Period. Whether I like that or not, it's the truth. We are all connected to each other energetically and you can prove it yourself. Take your focus off your family, sit back and watch how they start to grow and blossom in their own way.
Your 1-1 won't help you help your family because you refuse to make it about you which to anybody else looking in, is insane and it's clear you're trying to avoid looking at yourself and you're using your family as the excuse. Most people post diagnosis want simple basic awareness videos and personal anecdotes, they don't want too much too soon and if you're beyond that, why are you even going to the sessions? Why aren't you going to somebody who specializes in family dynamics?
This is a specialist area and only people trained in that area can help you and it is long term work. The family dynamics people who I know and have referred people to in the past work with family's over periods of years, not weeks or months and certainly not in a few sessions with one family member. But they would want to do intensive work with you first to uncover, for example, what your struggles are, which one of them is autistic rigid obsessive black and white thinking. You haven't even got any respect or gratitude for the people trying to help you. You're calling them lazy and wanting to report them to CCG just because they're not right for you so how on earth could they help you, even if they were the greatest support workers on earth, they couldn't help you because of your attitude towards them, which of course you will say only came after you had worked with them, which is not true at all. You're simply not open to help and that's not your fault, it's because you're autistic but I haven't got a clue how to get through to someone like you. I'm going to be specializing with people with autism in my work so maybe I'll find out how to help people like you, who are so steeped in their obsessive thinking that they can't even begin to look outside of it.
There are plenty of amazing family dynamic workers but they would want you to seek help for your autism as well, along side the family dynamics work and it will take years, not a few sessions. If you know the 1-1 you're currently getting why waste your time and there's turning up, why not just go to somebody who specialists in family dynamics. They don't have to be autism specialists as well but if you want help with family dynamics you have to go to a family dynamics worker. It's like going to the butcher for bread and complaining they only sell meat.
Well thank you for taking the time to respond. Food for thought but, as perhaps might seem entirely predictable to you in view of what you've said, I disagree.
I am open to exploring issues around blame, responsibility and guilt as part of a focus on family dynamics. No doubt my wellbeing affects that of the rest of the family as much as theirs affects me. But that's not tantamount to holding anyone hostage. Nowhere near.
Overall I need to find a way through that helps us as a family. If my own 1:1s can be a way into this, all well and good, but basic awareness videos and personal anecdotes from a support worker do not merit a medal. That's just them having a lazy hour and calling it something else.