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

"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. 

It may indeed be better if I were to accept it as simply that.  The support worker doesn't seem to offer any more than a pre-structured chat.  

Where is the evidence that this approach helps a lot of people?

i've explained as much as I can to them in advance and so I don't believe it's dramatic or venomous to expect a level of expertise commensurate with what I was led to expect from the Autism Service who made the referral.  You need neither be a wizard nor perfect to put together a basic formulation and work 1:1 in a person-centred way, nor to offer guidance and support on family issues.  They don't need to know everything at all.  But they need to be able to give more than is already readily available as basic awareness videos on the NAS website.  The expectation of individual tailoring of information isn't unreasonable, i don't think, either inthe world of autism or mental health.  

Not sure where the crazy/insane stuff comes from.  Clearly neither helpful nor accurate.  I don't see where you're coming from unless this is itself a place of blame.      

Why do you expect them to be competent and truthful? How many people do you know who are truthful and competent all the time? And why do you expect them to be flexible and to have the capacity to help people with challenging situations? I think you are expecting way to much from people, you really do hold people in high esteem if you expect all this of them. Most professionals, and especially doctors and nurses, are trained in a specific way, we haven't yet reached a point in our human evolution where people are able to sort other people's s**t out effectively every time, but we're  working towards it, we're just not there yet and remember the NHS is built on ill health not good health so they only have answers for ill health which they are taught can be solved with medications or operations.

Ticking boxes is a relatively new thing and is designed to make sure the workers don't miss anything, and it helps lots of people, but not everybody and not the more complex cases. There are thousands of people doing jobs they're not qualified or capable of doing, that's just the way it is. I guess we haven't got enough human beings who are consciously awake enough yet to do a better job. Why would you be jealous of anybody doing a rubbish job? I'm sure you could do the same if you put your mind to it. Don't be jealous, if that's something you would like to achieve, go for it.

Why do you think it's a curse to see straight through people? It's funny how we're all different because I see it as a gift to not only be able to see straight through people but to tell them so as well, I love it, I see it as a gift. I don't think I could ever see myself as a curse.

I REALLY don't hold them in high esteem - I expect them to be competent and truthful but they prove over and over that they are completely inflexible and incompetent - they do not have the capacity to understand and be able to help with a challenging case (challenging in that I have physical problems too).

They seem to survive on ticking boxes rather than actually doing their job.  In a way, I'm jealous that someone can be so amazingly incompetent and still get a good salary.  I think I chose the wrong profession years ago.  Anyone with an ounce of brain could rise through their ranks in a matter of weeks.

This is also my curse - I see straight through people.  I can model their behaviours very quickly - and when they prove me correct, I get disheartened. 

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.

That approach clearly helps a lot of people and if it wasn't helping you, all you have to do is say, that doesn't help, you don't have to be so dramatic and venomous about it. Who do you think these people are? Do you think they are wizards or something who are perfect and know everything? Autism awareness is still in it's early stages, what are you expecting and why do you rely on others to sort your s**t out and blame them when they don't? It's crazy, and even to another autistic person (me) this sounds insane. I wish I could help you because to be in your head must feel pretty terrible most of  the time but you can't even see that your problem is very basic, it is very common autistic obsessive compulsive rigid thinking, nothing else, it has nothing to do with your family so while ever you're bringing them into it, poor souls, you will never get to the root cause and you will not be helping your family in anyway. Unless of course you have a total burnout, which I've had and at least then your poor family will have a chance at life and maybe they will then be able to help you.

I would love for my doctors to medicate me, lol, but they won't! Although I did finally manage to get them to give me the sleeping tablets I've been asking for for over a year, thank god.

I think it's pretty insane to think that other people can solve our problems or that they will always be able to help us and if somebody can't help, I don't think it makes them useless, it just means they can't help in that situation. 

I think you hold doctors and support workers in too high esteem, they're not miracles workers, they're ordinary people like you and me, doing their best and they do help the majority of people the majority of the time, but they'll never be able to help everybody.

A booklet and sign posting sounds amazing support to me and maybe they didn't do a follow up because they are too busy diagnosing other people on a limited budget, or maybe you think they should stop doing that and focus all their time on Creek instead? Many autistic people like information given in written form so we can take our time to process and understand it and to figure out where we might benefit most from support which the sign posting will meet. I find it astounding why you hate support workers so much and why your'e so aggressive and mean towards 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.

My 1:1 support is a meeting with a support worker in a cafe every six weeks or so. It's more a chance for me to vent my spleen to someone.

They also lie - claiming they've tried to make contact - but cannot say which telephone number they used (ours also has caller id) - and as I'm here almost 24/7, it's just insulting.  They seem to have a set script that they just fart out at the next poor *** to tick their boxes.  Zero effort.

I was uncomfortable in my assessment meeting - the psychologist was more interested in showing off to a student doctor about how easily he could manipulate the patients.  He had already decided I was depressed and needed drugs before I'd even said a word.  He was a total hack.

The promised they would support me for an important event - didn't hear a thing.

As far as I can deduce, they do not have to actually deliver anything - their KPI seems to be no-one topping themselves - so their imperative is to drug the 'customers' into submission and hazy inaction..

My impression is that much of what passes for support is a ticky box exercise.  As you suggest, they now have a paper trail showing this referral and evidence of their additional signposting (regardless of the fact that you already belonged to these groups).  

To be fair they probably operate on a shoestring with very limited resources, but they might at least be honest about this and suggest relevant online resources, helpful books or options for private work if appropriate.

A booklet instead of genuine support.  Astounding.  I wonder why they didn't check again with you as to what you wanted/needed then, if appropriate, do a proper referral to another organisation.  

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.

They should know simply through their initial assessment process and any issues and struggles highlighted, which should also be shared with me as part of a collaborative process.  I'm open to what they might have to say relating to my diagnosis, the way it affects me individually and as a parent/family member, but taken aback to be shown standard introductory/awareness videos from the NAS website.  I think it should be clear to them that anyone who has been seeking information for at least a couple of years is very likely to have already found the basic stuff.  

So I have a different perspective on this and actually feel unheard.  Basic videos and family anecdotes (I.e. too much self disclosure from the support worker) are so wide of the mark it has to be obvious.

Their 'support' is to want to medicate me and, due to a brain injury that has been extensively investigated, is to refer me to the senior citizen memory team.  Total waste of my time and their money - but it looks on paper like they are doing something.. 

They've also suggested that I join various support groups - that I'm already a member of.  Useless.

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. 

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. 

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.