Published on 12, July, 2020
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.
Hi Former Member
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
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 think we have the same (but different) struggles in our everyday conversations with people Deepthought but I do also have a love of unusual (meaning not used every day) words, I just don’t seem to be able to retain/remember them for very long.
Having difficulties retaining/remembering words, might involve not having a viable short-term memory ~ but rather more just the long-term one. In a sense it is like as if the memory is a town, but there is only one bank and no cash machines, or there is only one supermarket and no little pop-to shops.
With Autism, having a short term memory system introduced, can be equivalent to having not only a spanner in the works, but a full set of spanners, numerous crow-bars and whatever else might mangle a machine up. Having one or more mental breakdowns can also leave the short term memory as being a mangle up also ~ leaving only the operation of the long term memory system, and not alot of experience on how to let it operate without the short term memory.
This links to having difficulties in communicating, as may involve your linguistic networkings (your inner dictionary systems) not yet being fully primed, which means that the words are all in there pre-programmed, but not in all cases actively readied ~ more on standby mode until activated. I found it was like trying to find the corner and edge pieces in a jigsaw puzzle, only in words, and once so the linguistic networking activated and became an assistant, rather than something requiring persistent effort to use in order to recall or get words.
Old English in the sense of the King James Bible and the works of Shakespeare primed my linguistic networkings for instance when I was about eight ~ only modern English took hard work for decades with loads of stress and confusion for me and others.
Then about ten years ago somebody mentioned 'power-words' and the Esperanto language, which as far as the translation into English words goes ~ it primed my modern English networkings a total treat. I just had to read each word (there is about 400 of them) out loud several times over for a few months. I can now speak simply or in complex terms, only the simple speak stuff is a weird experience for me, not unlike using the other hand to write when not being ambidextrous.
Even though writing in simple terms is difficult for me ~ oh my whole life writing words is a complete labour of love, although the labour pains and strains of having a concisely written mind-baby are really hard work, sort of thing.
But yeah, like you, I’ve been trying to use language that other people can more easily understand although today I feel so frustrated and I have no idea why and my favourite go to when that happens is to shut the (physical) world out
Maybe a frustration from however long ago being processed now perhaps?
With the shutting the world out thing I have four days where I keep worldly affairs off the list of things to do mostly, and three days on.
Arrrrrrrgggggggghhhhhhhhh ~ that’s how I’m feeling right now ~ I need to be in nature! There, I think I just answered my own question ~ go for a walk in the woods!
I find being other than in nature impossible being that it is everywhere, but the countryside or else for me a bit of time in the local park is refreshing, or at least calming methinks actually more.
It’s been great talking to you Deepthought.
It has has been been a very intriguing exchange.
Never stop being you and whenever you think you’re alone in the world, in not having someone else to talk to (in the way you like to talk), remember there is me in the world as well, having the same struggle ~ I bet we could talk for hours, face to face
I always find it weird when people tell me to keep being me, as for years so many people kept asking me why I could not be more like other people, and for the whole time I have only ever been able to be me.
Alone in this world has never been a problem for me, what with everything else here beyond the third plain, and I have a cluster of friends who know likewise as we do too. So if you do not mind a conversation that is not an alternative to desperation, but just the pleasure of so doing, a problem most certainly not methinks :-)
And as for betting we could talk for hours, I do not bet and most certainly not on certainties ;-)
Have a good one and play safely ~ and of course thank you too; a pleasure I am sure :-)