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

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?        

Parents
  • 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.     

Reply Children
  • 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 Shrug 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.         

  • 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.

  • 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.      

  • 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.

  • 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.

  • 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.