Verbal communication and actions are over rated.
For example, for the past 12 months while I’ve been in burnout, I haven’t heard from hardly any of my friends and barely any of my family, and I’ve got a lot of friends and family, so this isn’t usual.
This has been a true god send to me. Most of them don’t even know yet that I’m autistic and they certainly don’t know I’ve been in a burnout, they have no idea.
However, since I’ve started to feel better, I’ve had a steady but manageable (so far) stream of friends contacting me. Inviting me out for lunch, to go for a walk, to go nordic walking, cycling, one friend who knows I would love to go to Marrakesh has paid for and booked a holiday there for us in June, the same friend has also booked a hotel for us next week so we can go to listen to her favourite band who are coming over from America. None of her friends like the band so they won’t go but she knows I’d go to the end of the world for her if needs be so although I don’t like going to listen to bands, I’m happy to go with her because I know how important it is to her and she’s insisted that she pay for that as well. We might not see each other or have any kind of contact for months and months on end but she knows she can rely on me to the degree that if i’m able to help or be there for her in any way, I will be. She doesn’t have the same level of confidence in the friends she hangs out with all the time.
I have other invites coming in as well, as well as friends popping up to simply say hi, how are you. I don’t keep in regular verbal or physical contact with my friends or family but we are in touch constantly by something much stronger than our words and actions. They didn’t know that I need their friendships right now, that their friendships are what will help me on my next leg of the journey. I’ve decided to go back to India and Bali and some other countries so I’m going to be away for a while this time, maybe a few years, maybe forever, who knows, so it’s great that I get to see some of my friends before I go. And no matter where I am in the world, at least one of my family or friends (who are my family) will come and visit me. They have been to Australia, Bali, India, the Isle of Man, all the places I’ve lived in the UK, wherever I go or wherever I am my friends keep in touch with me some how. I’ve even had letters and cards arrive at remote ashrams I’ve been at in India ~ I wouldn’t even know you could do that!
I don’t keep in touch with them so much but they never let me out of their hearts and visa versa. They all encourage and support me no matter what I do. My dad is currently encouraging me to walk the Pacific Crest Trail, another friend bought me the book with the route etc and I just know that whether I want them to or not, at least one of them will come and see me while I’m walking the trail and either walk a bit of the trail with me or for me to have a little stop off with them. I know when my sister is hurt and in which part of her body and visa versa and she’s the least ‘spiritual’ person you could ever come across.
This is a few days later now and I have to admit that the messages from friends and family is starting to become a little overwhelming for me now. I’ll handle it. But what I’m saying is, if I had to rely on verbal communication, I don’t think I’d have any friends at all, but I speak to them in my language. They don’t use this language with other people and they have no idea really how it works with me but it does and I’m overflowing with gratitude at the love and friendship that’s pouring my way now, now that I’m ready to receive it.
Verbal communication hurts my head, sign language is a bit better but I much prefer to communicate in a non verbal, none sign language way. That way I don’t have to get past all your understandings and you beyond mine before we reach some level of mutual understanding.
This is why I love silent retreats and the level of friendships you form there go way deeper than the ones you make when you are verbally communicating or communicating through body language.
I love it when I go mute but that doesn’t happen very often so I have to accept that I was given the ability to speak for some reason. I have surrendered to this now so now I will be guided in whatever way I need to be and if it means using my voice, so be it. I don’t hate it like I used to. I accept I can speak and now I’m not fighting it I guess I’ll soon find out why I can. I still find verbal/body language to be a very crude and harsh form of communication though.
Sounds like things are really improving for you and it is good that people are showing such a genuine interest in you as well as caring for your well-being and needs. The fact that you have some unwritten agreement among you and your friends on how best is to communicate is wonderful. I am still trying to work on that one, but the fact that you have accomplished this brings me hope. Verbal/body language is overrated and unfortunately society revolves around it, but I still believe there is a way that NT and ND people can communicate between each other better than we do currently. Understanding and education will help with this over time.
I'm glad that things are improving for you and you are feeling better than when we last spoke. :)
Thank you Starbuck, I appreciate that. I feel so loved and cared for right now and with every message I get I feel so fortunate. I know I’m there for my friends and I don’t really ask for help, I didn’t know how to, but this feels like they are paying me back 100% plus more ~ not that I ever put a price on what I give.
And yes, I 100% agree with you. I absolutely believe there’s a way we can communicate better with nt’s. Most of my friends are nt’s and the diagnosis and the time spent in this burnout have taught me that I need to learn about others and understand them as much as I want them to understand me, as far as they can. My support worker is helping me with that as well and I’m finding ways to communicate with people that doesn’t result in arguments and me getting annoyed with them. I also see how even my brother in law, who I thought for all these years was out to wind me up, wasn’t/isn’t. I thought he was the chief winder upper and he wasn’t at all.
I’m coming to understand that my autistic traits won’t dissapear just because I have awareness of them but that I can do things to minimise meltdowns etc. For example, I might spent time with people but maybe make the visit a bit shorter and rest afterwards.
Having all that time alone, not even having to get out of bed or wash and change everyday etc has helped me tremendously as well as having the support from people on this site. I’ve still got a long way to go, my support worker keeps reminding me that I’ve got further to go than I’d like to think and that we have to keep on working the baby steps, because they are actually working. But I’m out of the darkest stage and I can see the light and that’s good enough for me.
I think we will all find our way to the light if that’s what we’re aiming for, however we get there. You’re often in my thoughts Starbuck because I know we were at a similar stage so I’m glad that my experience is giving you hope. It’s like it all just happened all of a sudden but as we know I put a lot of effort in to getting me where I am today but it worked. I’ve stopped taking the anti depressants but they were a huge huge help. I don’t think I could have got this far without them. I’m very grateful to them.
With the communication thing, I think it’s all about have total confidence in yourself. Not in who you present to the world, that’s superficial, but in that thing, whatever it is that got us this far. I’ve always had a strong connection to it, all my life, although I didn’t understand it like I do now, or I didn’t understand that others weren’t like me. It’s like when you’re so connected to that thing inside of you that is beyond thoughts and ideas, it emenates out and meets other people. It’s like, I knew I needed this period of total solitude. I knew that and had so much confidence in it, it’s like my friends responded and supported me by not contacting me in all that time. If they had been contacting me I would have been freaking out, I wouldn’t have been able to handle it. I came off all social media, unsubscribed to all email lists and started blocking them. This took me nearly a year but I achieved it so now I’m not getting emails. I just reduced my life down to nothing, basically. I rarely even get mail coming through the door now. In the past year I’ve hardly ate and when I did, it was usually chocolate yet my blood results are better than they’ve ever been. My vitamin D levels are the highest my doctor said that he’s ever seen. He said in fact, he’s never tested anybody who wasn’t deficient. And I know this is true after working with consultants and politicians in the Isle of Man to get the government to supplement everyone as a matter of course. I have never not been aneamic. Me, my mum, sister and niece are all aneamic. We take iron tablets now and again if it goes too low and we can rarely give blood, but this time, my levels were normal. I have provided my body with little nutrition, no sun light, hardly any fresh air, I have barely moved, I even have bed soars, I haven’t kept my hydration levels up, I have been frequently dehydrated, living on solpeideine to take the pain away because even though I knew a drink of water would do that, I couldn’t drink. Even if I had had to live on the streets, there was nothing that was coming between me and my burnout. Meaning I was shutting the whole world out. I knew it would work even though all those around me were worried, trying to throw labels at me, eating disorder, chronic fatigue, fibromyalgia, depression, anxiety, agoraphobia. I was none of those things. I presented as those things but that was a false appearance. I was simply exhausted. My first shut down of this proportion was when I was 18 months old and they put me in an isolation ward at the hospital for kids with learning difficulties, for 3 weeks, all by myself with only nurses going in to feed me. And it worked. I began to function again. And as many of us found out, receiving the diagnosis is not only a cause of celebration with the answers to so many questions, asked and unasked, it also comes with loss, grief, devastation, fear for the future and lots of other things. In the end I also stopped going to the job centre. I just told them I’m not going in any more, it’s not helping me, I need to not leave my house at all. They didn’t sanction me and they’re making it so I don’t have to go in any more. When I need that time for total shut down, I am so committed to getting that time that I will not accept anything less but I also don’t put any conditions on it. If it meant living on the streets and eating out of bins I would have done it. And I think when you’re that committed to giving yourself what you need, everyone around you seems to cooperate without you having to verbalise it. I was too tired for that. And now I’m coming out of it with a clearer mind and heart. The effort was all worth it.
Much love to you X
BlueRay said: In the end I also stopped going to the job centre. I just told them I’m not going in any more, it’s not helping me, I need to not leave my house at all. They didn’t sanction me and they’re making it so I don’t have to go in any more. When I need that time for total shut down, I am so committed to getting that time that I will not accept anything less but I also don’t put any conditions on it. If it meant living on the streets and eating out of bins I would have done it. And I think when you’re that committed to giving yourself what you need, everyone around you seems to cooperate without you having to verbalise it.
Golly! You really must walk an exalted path, BlueRay. How come you weren't sanctioned? When I failed my ESA assessment, following my suicidal breakdown, they stopped all of my benefits dead. I had nothing to pay rent or anything. I nearly went under. I appealed, so everything was reinstated - but then I had to go through all the stress of the appeal, and then later a tribunal. All of it nearly finished me off. I count myself lucky that it didn't, because it's finished off many thousands of other people. When the DWP were finally forced to reveal the figures on sanctions deaths, it was shown that over a two-year period between 2012 and 2014, 2,380 people on ESA died within a fortnight of being told they'd been deemed fit for work and would lose the benefit. An horrific proportion were suicides. But you're saying you simply went to the Job Centre and said 'I'm not coming in any more because it's not helping me', and they just happily went along with it? Even though we hear countless stories all the time of people having JSA sanctions simply because they were half an hour late turning up to sign on, or didn't go because they were ill. They clearly saw how committed you were to your shutdown, I suppose. I also find it remarkable how light you make of living on the streets and eating out of bins - as if it's a valid and wonderful life experience. Who are all these people, too, who magically co-operate when that happens? All these friends you have?
I didn’t even go into the job centre to tell them I wasn’t coming in. This is what I mean. I woke up one morning and something told me I had missed a job centre appointment. I checked and I had. I thought good, because I don’t want to go in that place any more anyway.
I had had a break of three weeks from the job centre because my work coach went on a three week cruise. They would never put me with another advisor, even though they had introduced me to one ‘just in case’ and they had helped me to get to know her. But that was ‘just in case’ my advisor dropped dead. I said I would only see another advisor if she dropped dead. So obviously they didn’t give me another advisor in her absence.
That three week break was like bliss. It did me so much good. I only went to my autism group once in that time and I didn’t go to the ancestry group at all. It was wonderful. I got a really good amount of rest.
So when I realised I had missed the appointment, I thought I’m just going to phone them up and tell them, the break has done me good and I’m not coming in anymore.
I phoned a number. I told them. The woman on the end of the phone said instantly that I wasn’t sanctioned, I nearly said I never thought I was, but I didn’t. She was then very apologetic that she had to make me an appointment though. She told me not to worry, she would make the appointment with my work coach (they do it there and then) but that she would also send a message to my coach, to explain the situation, so I didn’t have to, and she would make the appointment for only 10 minutes and she would ask the work coach to make the arrangements for me to go in the group where I don’t have to go into the job centre.
I never asked for any of that. I barely spoke. I said I’ll see if I can make it.
I went for the appointment, my friend came with me. Before I said anything, the work coach said straight away, don’t worry, I understand the situation, I got the message, you don’t have to say anything. She even apologised (which I thought was weird) and began to stammer a little bit, unlike I’d seen her do before, and she said I’m sorry, I thought we’d already requested a work assessment, I don’t know what’s happened to it.
I didn’t say anything, but to my knowledge and memory, we had never discussed a work assessment. So she said she’s on to it anyway. She said she will have to see me in a few weeks but we’ll make it as our catch up. She’ll tell me about the cruise and tell her what I’ve been up to. She said don’t worry.
The job centre coach doesn’t talk to me about details of the benefit either, like once she said they couldn’t accept my sick note. My support worker (arranged by the work coach) liases with her on my behalf so she can then explain things like that to me in a way that I can understand.
All of that happened and I barely said anything. I have heard and met people in a similar situation as yours. One lady at my group was supported financially and in every other way for months while she was left with no money. I was astounded at the generosity of the people in the group in the way they supported her. She wouldn’t have survived all that time without their support.
I don’t make ‘light’ of living off the streets and eating out of bins I simply see no difference to sitting on a street to sitting on a setee in a house. Yes, the setee might be more comfortable, but comfort is only one aspect of my life and there are also many ways to get comfortable, even on the streets. And if I’m sitting down, I’m sitting down, no matter what I’m sitting on.
What I’m trying to say is, if I’m on the streets, I’m on the streets. If I’m living in a mansion, I’m living in a mansion. I might have a preference for one over the other if I was given a choice, but in this life, if you want something you are not always given a choice as to how it will come about.
If I had been sanctioned, I would simply see that I’ve been sanctioned. If that lead to me sleeping on the streets, it would be that last night I slept in that house, tonight I’m sleeping on the street. If the only way I could have my shut down was by sleeping on the street, I would still go to sleep with the same smile on my face and with the same amount of love and gratitude in my heart for the ability to have my shut down and to be able to go to sleep. If I’m asleep, I’m asleep. What difference does it make if I’m in a mansion or on a street? Im still the one sleeping whether I’m in a bed or on a street. Sleep is sleep. What I sleep in doesn’t change who I am. It doesn’t change my happiness. It doesn’t change my gratitude or my adventure. I’m just sleeping here tonight. I don’t put conditions on how I receive what I want/need, only that I get it.
I didn’t think I don’t want to be sanctioned. That thought never came into my head. I thought, I don’t want to go into that job centre. I’ve had enough. I’ve enjoyed not getting washed and dressed and needing to know what day it is so I don’t miss the appointment. My mind has got clearer and sharper. I feel more energised, even if it’s only in my mind right now, my body will follow if I continue this freedom from having to do those things such as get washed and dressed and be somewhere I don’t want to go, somewhere that stresses me out. And that’s what happened after I told them. I didn’t ask them not to sanction me. The thought never came into my head.
They’re now arranging it so I don’t have to go in to the job centre. I’ve stopped making any kind of entries in that journal thing as well. I stopped that ages ago actually. Before she went away, she did ask me to make one entry, to avoid it going upstairs (whatever that meant) and she told me what to say.
I don’t think I walk an exalted path at all (whatever that is, but I’m sure I don’t). I didn’t know what would happen when I picked up that phone. Maybe they said you’re sanctioned. Well in that case, I would have probably said, ok, thank you and gone back to bed, as I did after she said I wasn’t sanctioned.
I would of carried on doing what I was doing. Talking on here probably and that’s it. I wouldn’t be angry or upset that they had sanctioned me. It’s not as if it was my money to start with. And I would have just carried on. I don’t know what would have happen after that but I did know, I was going to get my rest and that’s all that mattered.
So I guess, in this situation, the people who magically cooperated with what I wanted, was the woman who answered the phone, the job centre coach and my friend, who turned up that day, not knowing about any of this, and encouraged me to go because otherwise, I don’t think I would have gone. I didn’t want to talk to them, that was the whole point, I was improving more because I wasn’t going in there. . She said I’ll go with you and you don’t have to speak, I’ll speak for you. But it turned out that none of us had to speak, it seems the woman who answered the phone said something, I’ve no idea what, but whatever she said she made it clear I didn’t want to speak. I think that was the day my friend took me out to lunch as well.
When I told my gp that I wanted a sick note, when I first went to ask for the referral. He was a bit gobsmacked. He said I can’t walk into his office and say all that to him, I could be anyone walking in off the street. I said I was anyone walking in off the street and I had just said that and I asked him how he would assess my fitness for work in 10 minutes. He wrote the sick note, made the referral then kept me talking and saying prayers for me for another half an hour. We weren’t talking about the reason for the sick note or the regerral, we were talking about all sorts of things. My job, his faith, his church, my church, my trip to Australia, all sorts. I thought you were only supposed to get 10 minutes and I hadn’t planned on staying that long. I wasn’t well. I needed rest. I was in burnout. I just wanted to get the note, the referral and get out of there. He did say an incredible prayer though but when he offered me his bible I took it and ran. My energy levels weren’t up for any more talk.
Even with the benefits agency, I’m not really accustomed to having any problems with them in terms of getting what I need. I just seem to tell them and it just seems to happen. But maybe because I have no reliance or dependence on them. I see it more as a privilege. So if I ask for a benefit and they say no. I haven’t lost anything, I just didn’t get that privilege that day. Something else will support me. They don’t have to give me it. I found out today from my support worker that I can get a meal every week day, for a pound, literally round the corner from where I live, that I never knew about and 2 pound on a Sunday. That will help me as I’m starting to eat more regularly now. It will help me get into a regular habit of eating every day. I didn’t need to know that information before so I didn’t know it, even though it’s been there for years apparently. But the first time that I saw my support worker, after I decided I was going to crack this eating lark and eat something every day, she showed up with that info. The place has been there for years she said. I didn’t tell her that I had just realised that for several reasons I simply cannot cook or provide food for myself every day. I had no idea how I would achieve to eat every day if I wasn’t going to provide food every day, especially when I don’t want anybody in my house, I don’t want to go to somebody else’s, I would like to go out, but I didn’t want to go far. And then she came up with that! It’s nothing magical, it’s just that when we know what we want and we make a decision to get it, without any conditions placed on how we’ll get it or what it will look like, then we’ll get it.
I was thinking exactly about the same things.
BlueRay said:I phoned a number. I told them. The woman on the end of the phone said instantly that I wasn’t sanctioned, I nearly said I never thought I was, but I didn’t. She was then very apologetic that she had to make me an appointment though.
That situation is so rare as to be tantamount to a miracle. If you miss an appointment, you get sanctioned. That's the way they work. You don't turn up, so they stop your benefit. It matters not if your job coach is on a cruise, or whatever else. The system picks it up. They hammer people on benefits in this way. Which is why I say, and I firmly believe you, that you must walk an exalted path. You are very, very lucky.
But don't take my word for it...
BlueRay said:I simply see no difference to sitting on a street to sitting on a setee in a house. Yes, the setee might be more comfortable, but comfort is only one aspect of my life and there are also many ways to get comfortable, even on the streets. And if I’m sitting down, I’m sitting down, no matter what I’m sitting on.
I'm sorry, BlueRay, but I can't help it on this occasion. This is nonsense. Not only that, but many desperate homeless people would find it extremely insensitive at best and grossly offensive at worst.