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

Thank you for all of your thoughts on this.  

Given the various shortcomings of the system, its chronic underfunding and the limitations of what is currently offered, I think I will just try to get my bearings and take what I can from this service.  This probably means paring down my list to just 2 or 3 main concerns for the next appointment and hoping to focus on these.  For anything else I will ask for signposting and, at the same time and as my own knowledge and experience increases, seek out more specific private help. 

More importantly, and over and above that, though, I think I'll keep on developing our own "in-house" expertise because of course we are the experts on ourselves.  It may be that I also need to start gathering material for our own reference as there doesn't seem to be much on the family aspects of autism (although of course there are a number of books for helping parents of younger children and teens).  But I'll see what develops.  Although I can see the effects of autism going back over at least 3 generations, we've only started getting formally diagnosed in the last few months.  So it's early days in terms of that full awareness coming in.     

Yes, I have worked with people like this, so I know exactly what you mean. However, you can get an advocate to support you through the process and I’m not sure if you still can, but you used to be able to do a self assessment but an advocate would look into that for you. Local authorities have to make independent advocates available to you, free of charge, or you can get your own from disability rights groups etc. You have good cause to have one, due to your previous experiences and trust me, your experience is real and not uncommon so the advocates will know exactly what you’re taking about. It would be a shame to let some high and mighty know it all (not) prevent you from getting what is rightfully yours ~ the support you need to live your best life. And these days, the only restrictions to what you can or cannot use your money on (personal budget) is on things that are illegal. And when you are supported by somebody like an advocate, it’s not so bad going through the process. I wish I lived closer to you, I’d help. I was an excellent social worker and always got my clients what they needed but I also know how social workers do also deny people what they need through lack of being able to do a thorough assessment of their needs/situation. If you do try again, do get an advocate. You can contact your local social services and ask for the number of the local independent advocacy service. 

I live at home and haven’t had an assessment.  We tried with my mum who has physical problems and they came across as they know everything about her problems.  Which they didn’t. So didn’t bother.  We help one another. 

muggles! So we have lack of trust in them.  Tbh it took 5 years to get a disabled bay. 

That's a really great idea and I reckon it would be very cost effective as well. It's a similar thing to PIP, why don't they give it to everyone who applies and review it after one year to see what benefit it has made to their life? I love the tick form following diagnosis though and it would save sooooooooooo much heart ache and probably lives as well. It is such a good idea. Genius in fact.

Why can’t they give us a form after diagnosis:

Do you need a carer to go out shopping etc with you tick

Do you need someone to check on you in the day tick

Then you get the support.  Instead of dealing with a muggle with no idea.

I hope you get it Creek, with a social services assessment you should be able to get all that through a personal budget. If you were my client, you would get it, without a doubt, and a tick box like that would definitely be easier and  the social workers wouldn't be able to interpret your needs in any other way and muck things up. Good idea 

Why can’t all those with a diagnosis have a form you tick:

Do you need a carer to take you places  

Do you need someone to check on you throughout the day to eat etc  

Then you get it.  Rather than have some muggle struggling through. 

If you hadn’t guessed, that would be a great help to me. 

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

Fair enough.  The initial mention of blame actually came from you in reference to my family ("stop blaming them and holding them responsible for your lack of joy in life") plus guilt (as in "putting the focus on guilt") so I simply wanted to say that I'm quite open to engaging with any discussion of these with a support worker, psychotherapist or family worker.   It could be useful and bring more awareness into my relationships within the family.  No magic wand required.    

Yes, the NHS uses evidence practice, but with pressure on to meet more targets for autism diagnosis and ongoing support, I suspect they are keen to farm support out to existing charities.  I've not seen any specific research that suggests the benefits of 1:1s which convey little more than is already available on the NAS site, although that's not to say that it doesn't exist somewhere.  Perhaps the autism charity has positive feedback from other users.  

I find it disappointing though.  If this really is just about how autism affects me, then they could just say so (they haven't) and then take some time to look in more detail at the ways in which this is so (they haven't).  But to me it's also about a long family history, family patterns that have persisted for years, lack of knowledge and awareness in the family and the ways in which these are now affecting us.  I'm the first one in quite a large family to be diagnosed and I can see the path of autism writ large.  I simply don't see how these factors can be safely ignored. 

It would be good, too, to be able to suggest avenues for support to other family members who are interested but as it stands I'd be reluctant if such support amounts to a bit of a chat around a collection of introductory videos.         

I keep it simple. If they don't deliver the goods then it's clear to me they can't help me so I will thank them, with genuine kindness, for their efforts, and move on. I don't carry bad feelings around just because somebody can't help me. I'm very complex, I have autism, ADHD and PDA so that aint gonna get sorted out over night and not everybody will be able to help me, and I don't expect them too and I don't hold bad feelings towards them if they can't. My best therapist years ago, who I had for over a year, admitted she couldn't help me anymore and I couldn't be more grateful to her for her being honest with me and doing all she could to help. Autism wasn't even on the radar back then so I can see now, how she wouldn't be able to help me, without the awareness that I was autistic and had these other things as well. And what do you call very well paid? I wouldn't call even £10,000. a month even near to well paid and I certainly wouldn't get out of bed for less than that and nurses and support workers don't get paid that so to me, they're doing amazingly well on the pittance they get paid.

Really, I don't see where the references to hate or being aggressive or mean come from. I don't make it personal -  it's frustration with the level of service and their one-size-fits-all assumptions.   

But no, I NEVER accept incompetence for jobs I am paying for but likewise I wouldn't call them useless or have any negative feelings towards them if they don't do a good job, I simply don't pay them or I ensure they get the job done to my satisfaction before I do pay. I

These people are being paid very well regardless of their incompetence. I have no option available to withold their pay.

I don't accept incompetent work from anybody, not ever, and rarely do I get it but I don't expect it. I am world wise enough to know that there are plenty of people doing jobs they either can't do, won't do or don't want to do, even people on here, I have heard say they do the least possible at work just to get through the day.  I hear people all the time saying they hate their jobs etc, in fact, apart from myself, I know very few people who do only what they love doing in life so it stands to reason that there are many many people in jobs that they don't love, so they're never going to give their best when they don't love what they're doing. But no, I NEVER accept incompetence for jobs I am paying for but likewise I wouldn't call them useless or have any negative feelings towards them if they don't do a good job, I simply don't pay them or I ensure they get the job done to my satisfaction before I do pay. I keep it simple :) and I rarely go to doctors, only for things like sick notes or sleeping tablets  and I keep myself fit and healthy so I don't need them but if I did need them, I would make sure I go to somebody who I trust will do their best.

When I think bad thoughts about other people it makes me feel bad so I don't indulge in it. Instead, I will look within to where I'm being incompetent or whatever it is I think they're not doing and every time, without doubt, I find that the incompetence or whatever it is, is in me. If you spot it, you've got it, every time :) unless it doesn't bother you of course but if a person is taking their time to say negative things about somebody else, you can be sure they're bothered by that person's actions, otherwise why would they even give them a second thought? 

I've concluded that in reality, I'm not going to get any help from them.  Time to get the chocolate, wine and a cat.

Don't get me started.  "Beat the blues" or something based on Chris William's 5 areas?  :(  

i once got a very decent referral to primary psychology and got an excellent formulation of my issues and situation.  I was really looking forward to beginning some real therapy but the waiting list was 18  months and, before I got to the top of the list, the service was decommissioned!  At this point they said they'd refer me to an "equivalent service" and, ignoring the fact that my referral was for longer term psychotherapy, referred me for 6 brief CBT sessions with the local IAPT service.  I nipped this in the bud at the stage of the telephone assessment as both they and I knew that it would be futile.   

If their approach didn't work, they wouldn't be using it; that is if it has come from the NHS, because the NHS have to work on evidence based practice. Of course it doesn't work for everybody and if they told you they could help with family dynamics then I agree, I would be very wary of them because it takes years of specialist training to get involved with family dynamics so they were treading on slippery ground by saying they could help you with that and it takes years of input, not just 4 sessions, to help troubled families so maybe they thought they would be able to get through to you that this is simply basic autistic stuff that you're experiencing, not family dynamics. But just because they aren't able to help you, it doesn't mean they're useless and can't help anybody. And I thought you didn't want the basic formulation anyway? And why do they need to give more? Often these jobs are low paid and the workers don't have the time, mental energy or incentive to give more, they often work with what they've been taught and after a day of dealing with somebody else's s**t, they often just want to go home and relax with their family's, not doing extra courses etc (which employers might not pay for) to help with the more complex cases. If you want more, you usually have to pay for it or wait in line for family dynamic workers through the nhs/Social Services, which can take years, as there are so many families out there needing support. Your better option would be to pay privately for this but it usually takes years of work so it could get expensive, but I'm sure it would be worth it, you could work extra jobs etc to pay for it.

Of course you don't see where I'm coming from because you're caught in the classic autistic obsessive thinking cycle, pick up any basic book on autism and you will see it described in black and white. It's BASIC autism awareness but you're  too locked in to see it.

Anyway, I'm out of here. I've tried my best to help you see that this isn't about your family, this is about you understanding how autism effects you. 'Blame' isn't a thing, I don't know why you keep talking about it, it's simply something people do as a way to avoid taking responsibility but it's not a real thing, how can somebody be 'blamed' for doing something wrong or what they didn't understand? But I can see this is going nowhere, you are only going to agree with or like what somebody says who agrees with you. So good luck, I wish you all the best, for yours and your family's sake. I don't think anybody has a magic wand though.

And i think this is a reasonable expectation.  They will have a professional code of ethics and standards to which they should adhere  and NHS workers will probably be paid at least a Band 5 or a Band 7 for more complex work.  

Unfortunately too much time and effort has been co-opted into one-size-fits-all, watered down versions of real therapy and the funding just isn't there.  Given the caseloads they have, their work will probably be very diluted on that score too.

I think my own approach, once the dust has settled on my diagnosis, will be to seek out private therapy from someone well versed in autism issues.  

Jenny Butterfly said:

There is an over-reliance on pharmaceuticals plus on rather rudimentary CBT/IAPT-style therapy

They don't even bother with doing CBT with you now - they just send to a link to on-line CBT that's got nothing to do with the issues.  You're 'cured' and discharged if you complete it or not.

I expect competence from anyone being paid to do their job.  From plumbers to heart surgeons - feel free to accept incompetent work and let me know how that goes for you..

This has also been my experience in other areas of NHS mental health services.  There is an over-reliance on pharmaceuticals plus on rather rudimentary CBT/IAPT-style therapy (you know when you've been PHQ-9ed).  There seem to be fixed pathways and if you have a little knowledge this becomes rather obvious.  The KPIs are probably to see you within a certain timeframe, complete basic paperwork, prescribe and discharge (sometimes without even informing you you've been discharged).  

To be honest, if i hadn't been seeking an autism diagnosis plus post diagnostic and family support specific to that I would have let it all go by now.  Gardening, chocolate, a good chat with a close family member, sharing a bottle of wine and stroking the cat have all proven to be more therapeutic.