Care

The other day I read this fantastic article about nurturing nose and face wiping. Oooh, it really got me thinking. If you ever in the run of your day find yourself wiping someone else's nose, you should read this article. If you don't, you could read it anyway - it's never a bad thing to broaden our awareness of different life experiences, and you never know when you might find yourself in a situation where the insight and understanding you gain could be useful. An aging parent or friend, a grandchild, niece or nephew, or even your own child, spouse, brother or sister can find themselves in need of physical care at any time, long term or temporarily.

The article is full of quick, easy practical bullet points to consider, yet it relays the true essence of care with brief explanations of why each aspect is important.

It is all about increasing the wellbeing of the person being cared for by supporting their understanding and anticipation of what is happening, valuing their personal preferences (eg. amount of pressure, type of movement, smells or lack of them) and autonomy, promoting their dignity, privacy, comfort and physical wellbeing. 

I keep wanting to copy and paste bits but then it's all so good I wouldn't want to miss any out! So just go and read it!

But it also got me reflecting more widely on care. Everybody will at some point in their life find themselves in a position of caring, whether this be in employment or personal life. We generally find ourselves there because we do care for that person. Because we want to make a difference and support somebody's wellbeing in whatever ways we can. 

We are also almost certain to require care at some point. We all required it as babies and children and to lesser or greater extents will be cared for throughout our lives by those closest to us or by professionals.

Can you think of any moments when someone's care has really made a difference? It's easy to pay attention to times when we have been failed or let down, but what was it in the times when you felt cared for that made the difference?

One moment I will forever remember is when I opened my eyes a slit as a particularly bad panic attack was beginning to ease, to see the support worker catching my streaming snot and saliva with a big wad of tissue. That image sticks with me. No disgust, no revulsion, no big deal, no expecting to be thanked or that I was even aware of that particular action. Just two people being with me, facilitating me to recover in the best way for me: waiting until I was ready, using minimal language, taking care of my physical needs when I couldn't and wasn't aware of them, maintaining my dignity as far as possible.

I'd love to hear of any moments of care that have stuck with you, big or tiny.

How to tell the Story

 As I finished writing the previous post and discussed it with others, I started thinking about the techniques I use to try and overcome the various obstacles to communication that I listed. They don't address all of the barriers and they don't always work, but maybe some of my sneaky ways of cheating the system might help someone else with similar difficulties, or might be tweakable for someone else, or helpful to somebody trying to support communication for people with brains like mine.

I don't know that (or what) you want to know/it doesn't occur to me that it's something people would want to know/I've already told somebody/I can't think of any things to say.  These are tricky ones to get around because it's hard to know what you don't know. In some contexts it helps if people ask fairly specific questions (eg. in appointments), although this can lead to me not saying anything that isn't specifically asked so beware! In other contexts questions make it even harder for me to talk (eg. "are you OK?"/"how was your day?" General statements about the sort of things people want to know can be helpful eg. "please tell me if/when you feel bad enough that you use the crisis line" or "I like it when you tell me about specific things that happen in your day". These don't put me on the spot to perform immediately, but I can use them in future when I want/need to communicate but don't know what to say/whether someone will want to hear.

It doesn't occur to me that other people might not already know whatever it is that's in my head/ I forget that I could say things just because I want to say them/I struggle to say things purely because I want somebody to know. Sometimes I can CBT myself a bit in these situations and/or think back to the frequent conversations with my numerous professionals and peers and remind myself that people don't know what's in my head unless I tell them and there is nothing remarkable about saying things, even if people aren't interested or already know them.

I don't want attention. Telling people one to one and by a non-invasive communication message like text or direct message can help with this. Sometimes dropping things unexpectedly into unrelated conversation works for me though it probably isn't great for the other person! I may also try and change the subject again very quickly afterwards to deflect attention away.

I don't know how to say it. I find processing by writing particularly useful: brain dumps, blogging or just scribbling down whatever I am thinking or is bothering me. Other people use drawing and various different tools to help them figure out what's in their head and how to translate it into something other people might understand. If I don't have the time to do this on the spot I might be able to use a flashcard - I have a cunning one that reads "there's something I need you to know" - to get the ball rolling and help me avoid the distress of feeling trapped and despairing. We might then agree that once I've figured it out a bit if I can't at the time, I will email an explanation or a copy of my brain dump to discuss when we next speak.

Demand Avoidance/Exposure Anxiety/I don't want you to know.

• Writing a text message about my day or my emotional state and sending it before I get home so I don't have to say it. This is less "directly-confrontational" and sometimes manageable. A bit like writing this blog, I can pretend it's just writing and that I'm not actually telling anything to any people. Pressing send can be difficult so it's best if I do it really quickly without thinking about it and then move quickly on to something else.
• Getting in there first before anyone can ask me a question. Sometimes I can't do this though, and other times when I do it tips me over into some weird manic over-talky state which is like an elaborate mask (I can't communicate as myself so I'm almost acting a part and distancing myself inwardly from the vulnerability/anxiety that communicating brings. This is very Exposure Anxiety, if you are at all familiar with Donna Williams/Polly Samuel). So I'm still not sure if it's a good cheat or a bad one, because it does the job of communicating what I need/want to communicate, but leaves me exhausted when I come down from it.
• Saying the thing in some entirely unrelated context where I wasn't planning to say it. This takes my brain by surprise so it doesn't have a chance to say "no" and stop me from communicating. It also gives me a feeling of safety because I have taken the other person off guard with it so I feel in control, which protects me slightly from the vulnerability of exposing the insides. Again both routes around Exposure Anxiety. I hate unpredictability in others but I like to maintain a sense of my own unpredictability... Perhaps because it keeps me freer from expectations that I am afraid I won't meet (ie demands, think PDA traits).

What do you do to help you tell the story? What do you find helpful or unhelpful as someone wanting to hear the story? Please let me know - this is very much an ongoing work for me so any ideas are helpful!

None of the Story: Why didn't you tell me?

I've been asked to do a follow-on from my previous post on telling the whole story. As I touched on in that post, I am often prone to the exact opposite and telling nothing at all. Why?

I don't know that (or what) you want to know. Unless I am specifically told otherwise (eg. by being asked specific questions or instructed to inform a if x happens), I assume that what I might say will not be of interest.

It doesn't occur to me that it's something people would want to know. The previous point could be specific to person - I might say things on a certain topic to one person because they have specifically told me they are interested. But I will not extend this to the general population, because I have no information that anybody other than the person who said "please tell me" is interested. If nobody happens to have told me it's a topic I should tell people about, then I may just not tell anybody about it! I don't want to bore people and I don't want to get conversation wrong.

I don't want attention. Attention is a kind of demand to perform, which brings a risk of failure to which I am very sensitive. Speaking in a group of people, no thank you. Unless I am there for the actual purpose of sharing information on something I am well-informed about, but that is different - then I know what people want to know and I'm not relying on my personal performance; rather the factual content of what I am delivering. I have too many experiences of getting conversation wrong to want to invite attention.

I don't want you to know. I'm actually pretty open when people want to understand things, so it's relatively rare that this will be the reason I'm not telling someone something. If it is, it's probably because the thing makes me feel very vulnerable and I'm not ready to share it with them yet. Perhaps I fear I will be judged or misunderstood, or perhaps I am still judging myself about the thing and feeling intense shame. Sometimes I can also feel the need to be in control of information, especially if it is information that is valuable to me and I fear it losing its essence or it being mistreated if I let it get away from me. But more often than either of these, when I think I don't want you to know, it is actually exposure anxiety or demand avoidance being triggered.

Demand Avoidance. I wouldn't say I fit the whole profile of PDA (Pathological Demand Avoidance), but I certainly experience some of its traits at times. An anxiety-driven need for control and drive to avoid everyday demands can strike at varying intervals or in varying contexts, making it difficult to do what is expected of me (by myself or others). For example, for as long as I can remember, way back in childhood, being asked how my day was has made me inexplicably feel angry. This has never changed. Even if I want to, I feel utterly unable to give that information when it is requested of me. I can't express the anger that rises when the question is asked, because it is not reasonable. I feel bad because it seems like I don't want to interact with people and am shut off from them. Basically asking that question is a recipe for disaster! Sometimes I want to tell the person about my day, but if they ask, I can't. Sometimes I want to be able to do it so much that I am rehearsing on the way home what I will tell them, telling myself it will be OK, but I make it into such a demand of myself that I still can't. Or they ask before I have said it that ruins everything. If nobody asks and I don't plan it, sometimes it can slip out sneakily later and fool my brain. Because I didn't have to, I could. 

Exposure Anxiety. Perhaps even more pertinent than demand avoidance for me is exposure anxiety. I wrote a little on this here. It's basically a sensitivity to the awareness of your own existence. When attention is drawn to the fact that I am here, existing, I can find it hard to bear, resorting to avoidance, diversion or eventually retaliation responses. Things that may trigger that sensitivity include making decisions, making changes that might betray a personal choice, realising people are listening to you, your name being used, having a noticeable effect on the world, and many more. So obviously anything that invites attention, such as just talking can sometimes be difficult, never mind talking about something that matters to me and might betray the "me" that wants to stay safe in anonymity.

It doesn't occur to me that other people might not already know whatever it is that's in my head. I can't count the number of times I sat in my psychiatrist's office and had to be reminded that nobody can know what is in my head if I don't tell them... I mean logically I know that, but functionally I forget it quite often. Because things seem so obvious to me, I can't see how someone else could possibly not see them. I mean, I blinked for a split second longer than usual, how can they not know that I'm overwhelmed by emotions or memories and trying not to melt down?! I know that I'm worried about x, y, and z, they know about x, y, and z so they must know how worried I am. I have seen two pieces of information and come to a conclusion, so it would only be natural that everyone else has come to the same one, right?! I'm not quite sure how I manage to maintain this belief that I'm the same as everyone else when I know darned well I definitely am not!! I think I am getting better at this one in recent months though - certainly working hard on saying how I feel and what I need people to know (this is really hard, see exposure anxiety below) and checking whether I'm on the same page as other people rather than assuming.

I've already told somebody. This was a big one in the past and still pops up from time to time. Once I've told one person, I forget that not everybody knows. In my head, I have done "telling," I am past the "nobody knows what's in your head" stage, and so "knowing" is now the status quo. Except that of course "knowing" is only the status quo for the person I've told. If they remember me telling them. You can see the flaws in this brain glitch!

I forget that I could say things just because I want to say them. It's not only worth saying things that are so interesting somebody asked about them. There are many reasons someone might not ask,* but it doesn't necessarily mean they don't want to hear, and in the grand scheme of things, it usually wouldn't actually matter even if I said it and they weren't interested. But sometimes I forget all this!

*They might not know what I could tell them, so they don't ask. They might not want to be nosy. Many reasons, all of which affect me very strongly on the other side - I rarely ask questions because it doesn't occur to me that I can - I don't want to pry and I assume that people would tell me if they wanted me to know. I realise the complete incongruity of my approaches to sharing and receiving information!

I can't think of any things to say. Alternatively, I genuinely have nothing to say. This is my general state of being in everyday conversation. How do people think of stuff to say all the time?! I need a topic, specific pointers, questions, a thing to talk about. Even then I can struggle sometimes. 

I struggle to say things purely because I want somebody to know. This is slightly different from saying things because I want to say them - it goes slightly deeper. It is hard for me to overcome the feeling that if I am saying something purely to help myself, uninvited by somebody else and to benefit myself in some way rather than at random, then I am greedy for taking up time and space and effectively asking something of them (listening). This ties in a bit with exposure anxiety too.

I don't know how to say it. I know there is a thing that I want to say, but I don't know the words to make somebody else understand it. It can seem such a monumental task to work out how to say it that I don't even know where to start. If it's a precious thing, saying it wrong is worse than not saying it at all. Being misunderstood brings us full circle to the previous post and the importance of truth and accuracy. I find wrongness hard to tolerate, and if it is wrongness in someone's perception of my inner life, it is devastating. Sometimes I can't quite even work out what it is that I want to say or put it into words for myself. I may have to do a whole mind map to figure it out, or write for an hour or two. So it's no wonder really that things don't always pop out in conversation!

Gosh, twelve reasons I haven't told you! No wonder I get told off for not being communicative. And then start telling someone else the Whole Story and get told off for that. So start not telling the story again... And to think that I once questioned whether the whole "social communication" aspect of autism really applied to me!

Do tell me if you can think of any more reasons, or if you have great tips for working around them. Hm, maybe I should do another follow-on about methods I use to try and get past these obstacles...

Having just spoken to Mr Peggy I have realised that this post is a perfect illustration of telling the Whole Story and am laughing a lot that I am doing the very thing I just wrote about. And I realised that I could have answered with much more succinctness (definitely a word) his question about how the truth/everything being known being important interplays with telling nothing at other times: it's binary. Like so much in an autism brain. I'm either telling, or not telling. If I'm telling, you'll have to deal with the Whole Story; if I'm not, you'll just be guessing. 

I even worked out the parameters I would ideally work in for what gets told: things that people need to know, things they want to know, and things I want them to know. Trouble is, I still have very few ways of knowing how to allocate Brain Things into those categories! Ideas on a postcard again please!

The Whole Story: Completeness - where there is inaccuracy, there is chaos

I just heard it's an autistic thing.

Having to tell the whole story and not miss anything out. Because we don't know what's relevant. We don't want to miss things out in case we are later chastised for not telling anyone, when we were just trying not to overdo it and take up too much time and lose people in a sea of information. We didn't know anyone wanted to know that particular bit of information; they didn't ask for it. We don't know which bits will and won't be useful to someone else so we need to put it all in.

Or else we have learnt that the "whole story" approach is not acceptable (attention-seeking, boring, demanding, over the top, time-consuming, pedantic, annoying) and so we rely on people asking the right questions, and if they don't the issue never gets discovered, never mind solved. 

We can swing wildly between these extremes dependent on context, how recently we have been bitten by one or other approach (making us more likely to err on the side of the one that hasn't recently made a problem for us), general mood and who knows how many other factors. I tend to assume if somebody hasn't asked, they don't want to know. It is hard for me to know what they would want to know if I don't have specific instructions.

Also pertinent is the issue of things needing to be complete and correct in general. Unfinished tasks are torture. Open but unfinished packets of things make my brain messy. 

And truth. Autistic people tend to be very concerned about truth. If things aren't true and correct the world starts falling apart, because what can I depend on if something I thought was true was not dependable - how do I know what else is or isn't? Where there is inaccuracy, there is chaos. We tend to find lying difficult (or we just can't understand why people would do it!). Sometimes if the story isn't complete, it doesn't feel true because all the details aren't there. I haven't relayed it faithfully and may have missed some of the essence, giving the listened a false idea of what happened. To avoid misunderstandings, people must know Everything.

Memories

When I'm driving along or walking and autumn washes over me, I feel all scrunchy, and not in a good way.

When I first came out of hospital I was constantly assailed by completely overwhelming and uninvited memories. The slightest thing would trigger them and the emotions would take over me. It was exhausting, upsetting, and draining.

They come in ebbs and flows now; weeks where I'm much more here and now and weeks where I am being taken back in time throughout every day. New triggers pop up that I haven't met before and I'm back at day one, struggling to see the road through my tears as I remember somebody saying something a certain way, or filled with anxiety as I simply realise that something I am going to have to do may trigger memories. 

I can cope with the little ones that pop up a few times a day, snapshots of a time that seems so far away now, the odd turning over of the stomach. The unexpected ones and the new ones and the ones where the unidentified emotions just take you over or you've been dreaming about it all night and the feeling won't leave you are harder to deal with. 

It was a completely separate life. It doesn't fit into or link with my life outside. Nobody in my daily life has the same points of reference. That thing where people reminisce when something reminds them of a previous experience doesn't work, because none of my experiences from the last year are common to the people I spend my days with. You can't say "ah, remember that time when...?" If you want to share what's in your head (which is a big way most people communicate and build relationships, and occasionally it occurs to me to do so even though I am uncomfortable inviting attention by talking at the best of times, especially talking about myself) you have to tell them the whole story and they are still unlikely to really understand. It's not relatable, you'd just be the weirdo that's constantly talking about when they were in the loony bin... I also feel like that's somehow taboo, that I shouldn't talk about that time and that place in everyday "savoury" conversation, though I know this is probably just my own judgment. Over time I will build more recent experiences that do relate to my daily life and daily interactions and normal things that aren't about bonkers brains, but it seems that for the minute most of my recent frame of reference lies in that realm.

I don't know if I want to remember or not. It hurts, which is off-putting. Am I feeling like I am there again? Am I in the same emotional state as I was in at the time? Or am I having emotions about what it was like at the time? Do I feel like I want to be there again? Is my brain trying to experience it again because I have not finished processing overwhelming experiences? If I write about it in as much detail as possible will it help me to process? Sometimes I feel as though I need to go through everything in the minutest of detail with somebody safe and helpful, examining it all - what happened and how I felt about it and how I feel about it now. Being careful not to miss anything, until I am satisfied I have dealt with it all. I feel like the memories might become normal memories then with a normal level of emotion attached, just a part of the story.

I think not being able to share them stops me from integrating these memories into my story. They don't belong anywhere; they are in a separate box, largely to be got out only with my fellow loonies, then put back in again as I go back to real life. Except that my brain is telling me that they are important to me by refusing to let them stay in the box. They run riot because they need to be attended to, seen, heard, understood, given a place in my story and then somehow to become as unremarkable as everything else that happens. Maybe that's why I'm writing so much about that time at the moment. I'm sorry if it's boring or repetitive or weird, but as always, I write this for me, not for anyone else. When I can't talk about it (and it's isolating too, not being able to relate to others about a huge amount of what your brain is doing), I can see if writing helps a bit.

*DISCLAIMER* I use loony and bonkers as terms of endearment and humorous way of describing myself and my friends and celebrating our positive differences. We are all most excellent people, very capable and responsible and intelligent and interesting and, you guessed it, normal people (whatever that is!). Sometimes our brains do things that other people find unusual or that cause us problems if we or our culture are not equipped to deal with them. But that doesn't take away anything from our personalities and normal human qualities. Please don't think I am in any way demeaning people with quirky brains (yay to neurodiversity!)!

Sleepy feet!

So a few weeks ago I had a funny conversation with my OT. Not the one about whether I can put both feet behind my head, though that one was funny too. (It turns out I can, in case you were wondering and don't follow me on Facebook.)

On my agenda for our meeting was Item 4: Feet. He enquired as to the nature of what we should discuss about feet. I explained that my feet don't like being in shoes all day: they get very sad.

"Where is the pain?" he asked. 

What pain? When did I say they hurt? "There isn't any pain," I explained, "they just go sort of dead."

"Ah, so you can't feel them, like they're numb. Have you tried some different shoes?"

Insoles I already owned with a
massive metatarsal support and arch

Nope. It's like they're not there... they're not a part of me... I need to be able to feel them... They need more sensory input. We got there in the end! Luckily I'm pretty sensory-aware and was able to explain more to him about the exact kind of input I needed after I rejected all his initial suggestions because they were all wrong! Once he knew what I meant we came up with some great ideas. And I must get round to trying those toe socks we all had in the 90s, if I can find some cotton ones...

Trampoline park socks I already owned

The funny thing is, when I tell some people about the feet problem they know exactly what I mean straight away. Others have no clue what I am talking about whatsoever. Is this an example of the double empathy problem? We don't understand each others' method of communication. Or perhaps just that it is not a problem for some people (or not one that they are sensory-aware enough to recognise) and so they don't have language to describe it or to understand my description of it?

Compression socks (technically for
plantar fasciitis), dead thin and fit
easily under normal socks

Who knows, but it struck me as a good example of those times when I think I am talking about a simple everyday concept only to find someone has no idea what I am on about. Maybe I should start a running list of them, that could be interesting! I have a feeling the people that know what I mean tend to either be autistic/neurodiverse in some way or spend a lot of time with people with sensory differences...

Best buys from the last year

If you know me you'll know I'm not big on having "things" and buying stuff or spending money unless I need to or it's something I'm going to really enjoy (like a holiday!). But here are things that I have bought or received over the last year that have repaid me infinitely for my investments. All except the first one under £10 or £20 but genuinely life-changing.

Bose noise cancelling headphones. Definitely my biggest investment but totally worth it. My sister very kindly lent me hers while I was in the general hospital and actually I didn't use them too much there. Maybe because I didn't need them much, as I was originally going to write, being in a side room so having a door I could close. But probably more because I didn't realise I needed them. I didn't realise what a difference they could make. I had some normal in-ear headphones I used at times when I wanted to listen to something without closing my door so I thought that was fine - it was all I had ever known. But when some particular noises on the specialist unit became too much I tried out the noise cancelling headphones properly. I never looked back! The sound quality is fantastic and the noise cancelling reduces or eliminates a lot of background noise, particularly low-pitched hums eg. fridge/freezers in supermarkets, traffic noise. They make it more possible for me to use the telephone because at least I can actually hear the person on the other end, and they mean that I have varying degrees of removal from the ambient sound-world. If I play music loudly enough I can't hear my surroundings, or if I just use the noise cancelling I can hear my surroundings but the over-all input is reduced enough to reduce my stress levels. Sometimes just putting them on without turning them on is enough to take the edge off things that are just a little too loud, such as amplified music or voices at church.

Onesie. I love my onesie so much and wear it most evenings. revolutionary dressing gown alternative for people who can't help flailing around. Made of thick jersey (think joggers/tracksuit/hoody material) it is cosy without being that yucky stuff that is sold as fleece these days. Actual fleece is good - the furry stuff NO! Especially if it's shiny. 

Stanley (gift). Stanley is my weighted sloth. He is full of beans literally. He can go in the microwave and be cosy warm if you can cope with the smell his beans make, but if not, he is good for sitting on the knee, accompanying you in the car if in need of some extra comfort, swinging around in therapy sessions to help you stay regulated enough to say what you need to say, and he's very calming if you sit him on your head. NB. It doesn't have to be a Sloth, that is just the animal chosen by Mr Peggy who bestowed this most excellent gift on me last Christmas (OK, so technically not my own best buy, but a best buy!).

A tin of black paint, with gifted variety of sensory lights, shelf and beanbag. This was all that was required to make my sensory nook, and that has been a complete gamechanger. Low stim environment where I can go any time I am at home, to destress, recharge, regulate and either maintain calm or tolerate distress. Also more recently acquired: dark tent so I can have a nook when we go away places, and blinds for the car windows in case I need a bit of down time when I'm out and about.

Love my nook!

Compression socks. These are new and technically designed for plantar fasciitis, but I use them in a sensory way. My feet get sad and dead when they are in shoes all day at work. They need some light sensory input so that I can be aware of them being part of me during the day and this helps to keep me regulated. Wearing them for about half the day under my socks is about right. Other days I use insoles with a big metatarsal support or trampoline park socks with the little anti-slip bobbles on the bottom.

Tangles. You'll rarely see me in public without one! They keep my hands awake and give low-level anxiety an outlet so that it doesn't build up as quickly. They also seem to be quite a good indicator of my stress levels for other people, who can be better able to tell how I am feeling by what I am doing with a Tangle than by any other verbal or non-verbal indicator...
I have a nice collection of other fidget toys/stim tools from spiky spring rings (love these!) to squeezy balls (!) to magic snake cubes and natural objects like stones. Just shout if you'd like any inspiration!

Safe

Writing my post about community, I mentioned that I felt safe in the community on the ward. I nearly went off on a tangent about "safe" and decided it warranted a separate post.

Most definitions of safe state something to do with being protected from or not exposed to danger or risk; not likely to be harmed or lost. I looked that up after I wrote the following, and it fits right in! Danger, to the brain, includes not only injury and illness to the body but rejection by others and not getting needs met. Being despised, ridiculed or feared (all experiences of I guess most autistic people) probably come under that heading too.

Maslow's Heirarchy of Needs names safety
as a basic need required before we can access
the benefits of engagement and learning

I have had many conversations with people who live with mental health difficulties about safe people and safe places. In the general hospital there were some people who were safe and others who weren't. With the safe ones I felt empowered where I was otherwise scared and immobilised. People talk about whether they feel safe (and thus able to work to their fullest potential) with their colleagues. It seems to be a concept that we each think we have made up and yet we all understand. So I thought I'd see if I could figure out what I actually mean when I say I feel safe somewhere or with someone. And how could I say I felt "safe" in an environment when I had daily threat responses there? If safety allows thriving, what characteristics do I want to promote in my communities and in myself, to help me to feel safe wherever I go?

When I felt that I was not going to be judged (or if I were, there were sufficient people around who understood me to counter that message of misjudgment), I was understood, I was protected, and people were kind, then I felt safe. Later on, I found that I was valued. Now, this was by no means a perfect environment and there were definitely times where these things didn't happen, and I know that not all other people shared my experience, but these are the aspects that I think contribute to me feeling safe in any context.

I think a safe person or a safe environment is characterised by:

Non-judgment. I will not be judged or rejected for my needs, my mistakes, my character, my interests, my self-expression or anything that is intrinsically me. Some actions may not be acceptable but my character will not be judged by those around me.

Understanding. My needs are understood. My communication is understood. The people around me know me - they understand what is likely to cause a problem and why, and how to help. They also understand my abilities and give me independence and responsibility in the many areas where that is appropriate.

Protection. There is protection from danger, be this danger from my own actions or thoughts, or from those of others. I am helped to learn to how and when to protect myself. Perhaps a part of this is also boundaries. Although constricting, boundaries are there to keep us safe and every community has them. The clearer they are, the safer we feel, because we understand what can and can't happen, and the consequences if boundaries are broken. When this system fails, we stop feeling safe.

Kindness. I am treated with compassion. This encompasses most of the other points but I think it is so important it needs to be listed separately. When people are kind, the people around them feel safe. See my older post on Kindness here.

Freedom from social expectations (other than boundaries). I added this one afterwards because I was thinking about how my presence or input needs to be optional for me to feel safe. If I'm under pressure from others or myself to be present, the safe feeling goes. If I need to provide something (interaction, performing tasks, making decisions, just generally engaging to a certain level) I begin to feel under threat in case I cannot deliver. On the unit I was completely at liberty (outside structured sessions) to choose if and when I spent time in communal areas, and when I was there, whether I chose to engage with others and to what extent. Nobody expected anything from me and nobody would be offended or go without their needs being met if I were not there or not speaking. When I am truly free from social expectations I am at my best socially because I can do what is best in the moment.

... and the bonus, value and belonging. In a place that is good as well as safe, I am valued. My differences are not only tolerated but appreciated. I don't feel that it is a difficulty to accommodate my needs, but a pleasure because inclusion will also help others. I am not only not a problem, but I am an asset. People are fond of me partly because of my idiosyncrasies, not in a patronising way but because they genuinely see something they like in my quirks. My peculiar perspective is helpful in seeing things differently. I am recognised for the positive additions I bring to a community or relationship instead of my differences showing how I don't belong.

Is this what safety means to you? Have I missed anything out? As I have read this through a couple of times and added bits in I have noted increasingly that the attitudes in the people around us that foster safety are also attitudes that we can cultivate towards ourselves. If I can apply these lenses to the way I look at myself, I will increasingly carry my own sense of safety with me and perhaps become less deeply affected by the responses I find in different surroundings.

Edited to add, after this post from a friend, that feeling safe is as important as being safe. The brain and body respond the same way whether a threat is perceived or actual. And feeling safe then allows us to branch out beyond our safe place or take calculated risks knowing that we can return to safety.

Community, masking and belonging

Community has been pottering around in my mind recently. And then I wrote this and the first half ended up being about masking, so I'm changing the title.

Not this kind of mask!

I wrote almost a year ago about the revelation that I actually like being with people when I am sufficiently regulated. Although I have had friends since I was about 10, I generally had between one and three at any time and didn't feel comfortable socialising with them in an unstructured way or out of the context in which I got to know them (often interest-based or non-rejection-based) until I was an adult. I considered my friends as out of the ordinary in that the enjoyment of being with them outweighed the anxiety (which was decreased by their acceptance or appreciation of my quirks). Until I was an adult I was certainly still performing or "masking" when with my friends, though less than with other people. Even though as an adult and especially more so since being identified as autistic I have become more accepting of my natural self I think I have almost always masked: it was so much of a necessary survival strategy when I was younger that it became automatic and hard to identify how I would behave if I were behaving entirely naturally. For information on masking and its dangers, see here or here or do an internet search.

As I have become more noisy about being autistic and less hide-y, I have begun to lose the mask. Most of this work has been done over the last year. 

A perfect storm of conditions came together - I hadn't gone there to try and make relationships so I didn't have any expectations of myself or any pressure, I'd never met any of these people before so they wouldn't think it odd if I was different from how I was in the past, I felt safe, I was fairly well convinced I was not going to be judged (by and large anyway, and if I were there would be sufficient people around to give me the counter-reaction), my "behaviour" would not be out of place or unusual (OK, it was sometimes unusual, but it was very much accepted and even valued and I learnt that it was OK or even good for some of my oddities to become parts of my identity), and I was so much reduced to nothing as a person that I didn't have the will or the energy to hide anything. It was a chance to find out who I am when I don't pretend, and a bit like a reset button on my life. Who am I when I stop behaving how I think I ought to behave because I want people's respect?

This, I think, is the most I have ever been part of a community, which is sad, and maybe one reason why I was so sad when I left. In life I have been part of many communities. In some I have been more myself and in others have masked a lot, but never have I been able to simply be until this point. On second thoughts, perhaps it's not all sad. Perhaps it's happy that finally all the pieces came together at once to allow me to discover that there is a possibility that I can be me, and I can be me safely and happily with other people. And that the time when I didn't mask was when I first found belonging - it was my true self that belonged, not some self that I thought I was meant to be. There were things in my past communities that could have been more inclusive and helped me to belong, and there were things in me that needed to be in place to get the most out of the opportunity (look, both of these things can be true!! If you read my earlier post...). The right people, the right environment and the right point in my life experience came together to give me a kick-start on finding myself, accepting myself and educating others about myself.

Now I have to learn how to translate that into the real world. The real world is not made up of only people who understand neurodiversity and are full of compassion. But the more I carry on being me, the more I find out just how many of those people there are. And the more I carry on being me, the more people will become compassionate understanders of neurodiversity as they find out that people like me aren't scary or dangerous or incapable, to be despised or wary of or changed or hidden away. 

I have often been scared of communities in the past because I have been either on the peripheries of them or an outcast. Sometimes I have sort-of-belonged-a-bit but never felt comfortable except with a couple of people. Communities have never been somewhere I can relax. They have been fraught with danger and vulnerability, so many ways to get it wrong and find out once again that you don't belong. So I have preferred to stay with my one or two people outside the circle where we're happy. And I'm still happy to be there, but I've found out that there are circles that I do belong in too. If I am naturally myself the circles start to find me. My work circle is becoming a place of belonging - there have been pockets of belonging there since day one, but I restricted that circle by hiding bits of me. As I start to be myself, instead of my circle shrinking and my being cast out, my circle is growing. I am becoming part of the family. I am valued and cared for and I am OK with that. Actually, it turns out that I like it. 

If I don't accept myself I don't give others the option of accepting me. They may choose not to, and there are certainly still those around who don't (the security guard outside the supermarket when I shutdowned yesterday... luckily he wasn't nasty, just annoying, and the Supermarket Lady and Hair-Changing Passing-By Work Peggy were very understanding and helpful), but if I judge what I think they'll do without even giving them a chance, then although I may be protecting myself, I may be missing out too.

Will I be brave enough to offer this opportunity in some of my other communities I wonder, and will they take it up? And will I find anywhere I belong quite as naturally as with my fellow loonies?!

Now I have discovered that being part of a community is something for me too. It may be scary and involve risk and investment, but a safe community for me is a thing that can exist and a place I can thrive and belong and have all those things that people think autistic people don't want or can't have. Only because we've grown up in a society where we don't understand most people and most people don't understand us do we all have those beliefs. Autistic people do benefit from belonging, and we can belong safely.

Picture from https://artmiabo.blogspot.com/2015/08/colours-in-circle-abstract-art-by-miabo.html

What is this post even about?

I'm trying to write a post that feels like it needs to be written, but nothing I write feels quite right. Usually when I don't quite know what I want to write, I start typing and something forms itself that seems to get whatever I needed to get out of my head out of my head. As it were.

But I've tried this one several times and it's still not coming together. I want to write about how the events of a year ago are affecting me now, about how life is different and how I feel about it all and what the brain does and what still affects me and how I am coping with returning to all the previous bits of my life that went on hold. But I can't seem to gather my thoughts or pin them down. I can't find the nub of what causes me trouble and why. I can't identify the things that are happening in my brain or make sense of them. 

Sometimes I'm overwhelmed; sometimes it's like it switches off and none of it seems to matter, but this is accompanied by a sense of foreboding that it hasn't gone away - it's just hiding, ready to pounce when I'm not expecting it. Sometimes I'm too weary to care, but I know that is temporary too. I need to find a way to unravel everything that has happened, to acquaint myself properly with facts and feelings and integrate it all into my story so it stops jumping out at me, incessantly demanding attention, sending me alerts and notifications and generally causing trouble.

Ideas on a postcard please!

29th September

This night a year ago was the last night I spent in my own bed for nearly eight long months. I was trapped, terrified and almost hopeless. The following day I ended up in hospital.

This year I have just got back from ballet class where the familiar syllabus is like an old friend, constant through everything that changes. I have jumped and turned and been en pointe. Last year I could barely walk a few steps. 

Tomorrow I will go to work, to my wonderful new class of little people with huge personalities. I'm enjoying them so much, perhaps all the more because I only got two weeks of last year. 

It should be as simple as that. I was barely able to stand for a minute or two, to speak more than a couple of words together or to concentrate on anything for more than a few minutes. Now I can walk in the countryside, dance, drive my car, fly on zip lines, go to the shops, relax on my own sofa at home with Mr Peggy, going where I want to when I want to and doing what I want to. It should be that simple. 

In the hospital I found hope and fear in equal measure. To begin with, enormous relief that my ordeal was over, everything stopped, no more fighting. Peace at last. Hope for freedom and life to return. The first night's sleep I'd had in weeks. But the darkness didn't leave; it wasn't that simple. 

There was pain, fear of the immediate reality and of the future. Gradual realisation that this was going to be the long haul. So many experiences that overwhelmed in so many different ways, which I still haven't processed now and don't know how to (sometimes I think I have more problems now than I did before!!). 

The struggle continues daily, well multiple times daily. It rarely leaves my thoughts. I don't always win. Emotions and memories party in my brain and body uninvited and I struggle to cling to what other people tell me is the truth. 

But today and tomorrow I'm trying to focus on what I can do that I couldn't do before. This time last year I was deluded enough to think I could be back to school by half term. I was off for the rest of the year. This year I will be there tomorrow and on the first of October, and through November and December and 2021, full of life. 

A different path

A year ago I was a good way along a treacherous path, with the danger increasing daily. I was terrified on that path in that dark place but all other routes had long since vanished beyond my ever-diminishing sight. Soon the fear faded into numbness and the darkness seemed normal, the path familiar. Awareness shrank and life became a one-track survival challenge from one moment to the next. 

And in another way I was blissfully unaware of the depth of the danger I was in. I knew I didn't like it and I just wanted it to be over, but to be honest, judging by other people's accounts I still don't quite accept how bad things really got. 

A year later. So many wonderful wonderful people have given me so very much. The help I received when I continued (and continue) to make poor choices feels too much; undeserved. I am so grateful to each person for each moment of care - I can't put into words what those moments are and how precious they are and how each one becomes a stone in the new path I'm trying to build that leads out of this place.

A year later. Why do I want so badly to run right back to the darkest place? Why does the thing that brings me only danger and that wants to steal my life feel like a place of safety? Why am I constantly drawn there, wanting to visit, to stay a while, hm maybe I'd like to live here.

Everything in me compels me to be there. I need to be there. There isn't another choice - that is where I should be. Yet I have to walk away. Each step is fear and horror, where it should be hope, joy and freedom. I've had so much support, so much sense, so much time, I'm sorry I can't see what you all see, but I hope the fact that I'm still trying to walk away shows that I trust you. That each time I find myself heading back towards the darkness I ask for help, I turn around and I try again despite everything in me screaming at me that I'm destroying myself and leaving behind everything good and safe. I hope that shows the value I place in the people who help me. I'm trying to trust you that this path I'm building will be worth the pain. 

Why am I a body-listener?

In my previous post I found myself playing the piano. It made me reflect on how thankful I am for the skills that I have been taught throughout my life that bring themselves into play to try and help me. Playing music, listening to music, letting my body move in the ways it wants and needs to, seeking out dark and quiet space alone. Most of these skills were taught to me in a different context from how they help me at the moment, but they repay my investment (and that of those who teach/taught me or enabled my learning in different ways) in them over and over. I'm enormously grateful for my ability to listen in to what it is that might help in any moment - in fact it more often happens quite subconsciously that I find a compulsion towards an activity which will help to regulate me.

I began to consider this inner awareness and its origins. Is it innate in me or have I learnt it? Currently reading about Developmental Movement Play (and recently listening to a podcast sent me by a dear friend) I am reminded that that our culture as a whole tends to be painfully disembodied, with the exception of a few disciplines that have a clear focus on inhabiting the body such as yoga. Why am I less so? Is it because I have always been active? Perhaps yes, and perhaps no. The activities I took part in as a child, teenager and young adult demanded mastery of the body. This involves high-definition awareness of what the body is doing but leaves little space for asking it what it would like to be doing. 

Is it because I have spent time practising yoga and tai chi? Perhaps this has helped, but I have a feeling I did not quite grasp this aspect of yoga until after I had discovered developmental movement play. Was that the magic moment? It was magical in many ways, but the approach of JABADAO (search my blog for more posts about JABADAO) and body-listening, body-communication etc seemed to come quite naturally to me. It was as if I had found what I was made for, how to really be. I noted that it wasn't like this for everybody.

So that stuff was and is instrumental in bringing the whole concept to my thinking brain (as opposed to my body-brain wherein it had been confined previously) and helping me to utilise and develop the skills to be consciously aware of what my body and brain need - to stop and ask them, and to follow their suggestions, but I don't think it can take all the credit. I think what it did was to begin to free what was hidden in there all along, squashed somewhat by trying to fit in to our society, but not squashed as much as most people! Because my brain is more focused on the sensory world than some brains, I find it easier to access these things, or harder to ignore them. So sometimes I love autism!

The body speaks if we care to listen

I'm super dysregulated today. 

My first clue was that I was standing on my tiptoes waiting for my tai chi class to start. I actually thought I was feeling a little calmer this morning because our shower has been fixed so my morning routine is finally back to normal (see the executive function post to imagine the difficulties with figuring out how to wash yourself and start your day when your routine is not available!). But when Instructor Peggy (he's definitely part of my network of supportive Peggies!) joked about how tall I was I began to pay attention to my body and discover unease there, outed by my body's attempts to regulate itself. I noted that even though attention had been drawn to me, my feet really wanted to stay with the extra pressure of being on tiptoe. I was anxious. 

Later in the day my body has led me to playing the piano, reading, painting, and rolling on the floor. I've noticed it hasn't wanted to do any of them for very long, whereas often it will stay with one occupation all morning or afternoon. It's feeling unsettled, which makes a lot of sense given the amount of changes and unpredictability and stressful situations coming up in the next week. Each activity has helped a little in the moment, but I don't settle to anything. Now it has sent me blogging, instructing me to delay the supermarket trip (it felt a supermarket meltdown coming on - I wonder whether it will after I've done this). It's trying to help me out - sometimes my body knows better than my brain. 

Yesterday it popped me in the nook for most of the day which was quite appropriate but clearly today is different. The anxiety is mounting and so the body is looking for the best way to stay regulated. Let's see what it brings me to over the next few days!

I didn't have a supermarket meltdown. I took my time, used my familiar soundtrack and navigated the shop without drama. I have enough experience by now to know that my body usually guides me soundly. Now maybe I should listen to its guidance on emotions too... I reject them but then they just escape or leak out uninvited - tears in that restorative yoga pose, dreams about having meltdowns, they're all messages telling me something needs attention.

Both of these things can be true (dialectics)

 Sooo, here is a thing that has popped up in an awful lot of conversations this week. Different people, different scenarios, and not just me going on about it special-interest-style - it's emerged spontaneously in conversation, brought up by either person. Although true to character it is often me that gets excited and starts yelling about it when I notice we've ended up there again. I do love making links and identifying things: it helps the world connect together and make sense.

I will always remember a particular nurse who was oft heard to remind patients "both of these things can be true." I think of her every time I exclaim it mid-conversation, and I will never forget the mind-blowing effect it had on me the first time I heard it. It's a devastatingly simple concept, but was a whole new world to me, two things being true at once, the world not being binary black and white boxes. Transformational!

When I am anxious about an upcoming event I get asked, "will you even enjoy it at all"? or "is it worth putting yourself through this?" and I find myself trying to explain the conundrum of how it's OK to go because although I am and will be anxious, I will have fun too. Then I realise it's really simple: it's that thing again! Both of these things can be true. Although anxiety may at a first glance appear to preclude positive emotions, in truth I can have anxiety and have enjoyment at the same time. I have anxiety most of the time so it's pretty lucky that's true or my life would be incredibly dark and dismal. Two statements that seem completely at odds with one another may actually both be true.

The principle works for a whole host of scenarios. 

A teenager may want independence and want the support and care of their parents

A parent may love their child and impose consequences for their behaviour

You may have an argument with someone and still be friends with them

You may be terrified of something and you may want (or need) to do it anyway

In some cases we may only even see one of the truths - certainly only give one any weight. Because I have a one-track mind, I forget that more than one thing can happen at once. I note the uppermost thought or emotion occurring in a time of distress and take that to be the truth. 

Because our brains are programmed to keep us safe they are particularly alert to danger and keen to warn us of potential threats (remember if our brain perceives a threat as real it acts as though it is, whether that makes logical sense or not), so we are likely to form speedy assessments in situations where there is any possibility of "danger" (including danger of being rejected or overwhelmed). This can give us a tendency to think in a very black and white way (particularly characteristic of autistic people anyway), to jump to conclusions and mind read what we assume others "must" be thinking. And it means that the uppermost thought or emotion tends to be the most threatening one.

If I have a disagreement with somebody, in my head I think they think I am wrong, which in the immediate instance, they probably do. The trouble is, this becomes my truth. I think that that then defines their opinion of me as a person. I forget the quite possibly simultaneously-occurring truth that they like me and/or respect my opinions.

I make a mistake and I forget that alongside "I got it wrong" can exist the truths "I meant well," "I tried my hardest," "I am loved regardless."

So I'm glad this has come up repeatedly in my conversations because it's so easy to forget, but it's one of the many wonders of DBT!

Scenarios paraphrased from: https://www.mindsoother.com/blog/how-to-think-and-act-dialectically

Further brief introduction at https://www.sheppardpratt.org/news-views/story/dbt-101-what-does-dialectical-even-mean/

The Oldways

 If I wasn't already known as the village crazy lady then walking barefoot down the street stroking my hand with the fronds of a fabulous piece of reed should have done it!

This walk was long overdue and as soon as I left the house my feet let me know they wanted to be on the ground, not the flip flops I had put them in. I ignored them for the duration of the appointment I had gone out for, but as soon as it was over I had to let them be free. 

My feet found so many wonderful treats and treasures for me and led me to where I needed to be. 

Long grass, short grass, cool grass, warm grass. Hot hard tarmac. Smooth paving. Earth baked dry and earth with a spring. Soft dirt, spiky stones. Bark that wakes up each millimetre of forgotten sole.

Insects buzzing, breeze in the trees, pigeons beating the air with their wings. Doves cooing, tiny popping as water evaporates under the sun from the drying stream, and the odd drip from the grasses growing into the water. A distant pheasant. Butterflies dancing. Songbirds chattering. And me, finally still. Sitting, silent. Breeze stroking my skin in the warm shadow. Bare feet, breathing the life around me, being part of this place in this moment.

How to brush your teeth: What on earth is executive functioning?

I promised a post on executive function a while ago. Ironically it has been delayed because it took me so long to collect my thoughts and work out how to put them into words!

Executive function is a funny phrase that doesn't really explain itself very well. I think it sounds like a very vague term for nothing in particular, or that top boss who's technically in charge of everything but doesn't actually do anything in particular. Well, in some ways it is a bit like that! Executive function is your brain's organising and ordering of its own self. 

It's what helps you work out what you need to do, when you need to do it, and how to do it, from something as "simple" as brushing your teeth (do it after your last meal, before you go to bed - perhaps it has a more precise spot in your evening (and morning...) routine which we'll touch on later - pick up toothbrush in one hand, toothpaste in the other, open toothpaste tube, squeeze a pea-sized blob onto toothbrush, close toothpaste tube and put it down, turn tap on, wet toothbrush under tap, you get the idea...) to complex tasks like driving, mathematics or writing a book. The unsung hero without which we would not order any task - ever tried to make tea without boiling the kettle? - or switch between tasks, or work towards any goal. Sequencing, memory, decision making, paying attention, starting/finishing/ordering tasks, flexibility (of thinking, rather than body...), self control, emotional regulation and problem solving are all the jurisdiction of executive function. 

Some brains, for example those described as autistic or having ADHD, have a bit of a different operating system. Life would be boring if all computers ran Windows, after all. These operating systems may prefer to do only one thing at a time rather than running several programmes simultaneously. Perhaps they need each task to finish before the next can begin. They may have a favourite programme that runs more easily than others or likes to take precedence over whatever else is trying to run. 

This can often be fantastic - when only one programme is running it may run at great efficiency and is highly accurate. It gives a satisfying and detailed picture to the viewer. Jobs are done thoroughly and to a high specification and often enjoyed. 

However, in a world that more often runs a different operating system which expects more flexibility and variation and prioritises specific tasks that are valued by society, this can cause difficulties for any of the parties involved. If you're expecting to interact with one operating system it's a shock to be met with another. Many people only know how to work with one operating system and find it difficult to navigate others. 

Autistic operating systems can require a significant amount more preparation to switch tasks. They may evaluate the relative urgency of tasks differently from others or evaluate all as equal (brain explodes here because there is no deciding factor for which to begin first). They may not have filters for incoming data (sensory or social or emotional input), which can derail the task in hand. If a task is derailed they may not have the instructions pre-programmed to resume mid-task and may need to restart from factory settings. They may not have reliable filters identifying which information is relevant, or most relevant, and therefore flounder in decision making tasks as the options, pros and cons are overwhelming. 

What a lot of metaphor. What does this mean in my day to day in my life? 

It means that I rely heavily on routines to compensate for my differences in processing. I mostly have pretty good ways of getting by, until something interrupts my compensation strategies and I realise just how difficult my system finds some things when it's not fore-armed to deal with them. 

A beautiful example: on my first few days at home after living in hospital for months, it took me forever to get myself into bed. I would stand in the bathroom looking blankly around me wondering what I needed to do, or I would pick up the wrong items for the task in hand, or get into bed and realise I still had my contact lenses in. 

In my then familiar environment of my bedroom on the ward, everything was where it should be, each task happened in the same order each night and bedtime was smoothly accomplished in a few minutes. Take away that muscle memory routine and I had no idea how to go to bed! I knew the title of what needed to happen: "go to bed", but had lost the step by step instructions and didn't know how to to it. Imagine having to think through every step of the toothpaste scenario described earlier. And then remember to do the same for changing into pyjamas, using the toilet and removing contact lenses. It's exhausting. A window into what it's like when autistic people have their routines removed or interrupted. Exhaustion brings a reduction in coping resources and executive function, and you can see how the spiral spirals. 

How many plates?!

Only yesterday I had a spectacular moment of abandonment by my executive functioning system. I had cooked the tea and discussed with Mr Peggy and a socially distanced Ma Peggy how I was going to portion it to find out how much raw ingredient I need to make the right sized cooked portion. When it came to the time, I just couldn't figure out how to organise myself to portion up three platefuls of food and find out how many portions were left. Did I need to get out about 8 plates to portion every portion out? Where would I put all those plates? That would make a lot of washing up. But if I put all the spares in one place how will I know how many there are? Perhaps I should measure one portion at a time and then put them back into a communal tub, thus using only one plate? If I portioned them all up straight away the ones to eat now might go cold. And a thousand other confusing thoughts and questions. Luckily I recognised the signs of overload and asked the Peggies what to do! I often end up taking a lot longer to do tasks or doing them in a way that seems overly complicated or inefficient to others, because my brain has found a way to do it that works. I may stick with this method if I do that task again in future, because I have done it before. It takes a lot of time and thought for me to reprogram to a new way of doing something even if it is simpler.

Routines help me through every part of my day, usually subconsciously. Leaving the house, getting up, arriving somewhere. Most of my belongings have a place, so I know where to find them. It takes a lot of brain power to look for things (start with places it might logically be, but then imagine where somebody else might put it in their logic, but that may not seem at all logical so then you are looking literally everywhere!), and the looking interrupts the task, so once the item is found the task may have to begin again. So I like to be able to rely on them being where I expect them to be. These little routines and habits are not exclusive to people with executive function differences (how many people wash themselves in the same order every time they shower or get irritable when their keys are not where they left them?), but people like me tend to have more of them and rely more heavily on them. It distresses me when things are not where they should be and when things do not happen as they should happen or I am expecting them to happen because I have to reset my whole brain. 

I also use longer-term routines to help me make sense of the world and the passage of time, and to help me know what to expect - predictability and familiarity, in case you hadn't yet noted, help the busy brain. I always to the washing on a Saturday. I clean out the guinea pigs on a Sunday. I do the weekly shop on a Friday afternoon. I go to certain classes (eg. yoga) on certain days. I feel more like I understand and can predict the world this way, and then I can relax a little. When these weekly rhythm routines are disturbed I have to spend a lot of energy on constantly notifying to myself what day it is, when the next "normal" thing will happen to try and get me back on track. 

I use lists nearly all the time, especially lists of "to do" and "to get." Otherwise the items zap around in my head demanding attention, until the moment when I needed to remember, by which time they have toddled off for a brief nap only to resurface when it's too late! When preparing for a particularly busy day I make a chronological list of each step I need to accomplish, so I'm not grappling with trying to remember, prioritise and sequence it as I go along (this is basically a version of  a visual timetable; a tool used throughout the special needs school where I work).

I have to reply to messages as soon as I open them or I won't remember! If there is a pending communication, woe betide if it doesn't make it to my to do list (please tell me if I owe you a communication!!).

Little familiarities that can be used across contexts can be helpful. Using my own equipment (eg. pen/notebook/blanket/toiletries/car/cutlery etc etc) and doing things my own way even in a new situation can help. If I have a "soap bag" evening routine for travelling, this night mean I can more easily get to bed in a hotel or friend's house even though the environment is not familiar, because the soap bag, its contents and the routine I follow with them are the same, which reduces the newness and therefore processing involved the task.

Throughout childhood and my teenage years I would have minor shutdowns from getting too hungry and then needing to make a decision. Decision making is still a major trigger for shutdown: my brain just can't process and prioritise all the variables but can't produce an answer unless it has a deciding factor, so it crashes, much like a computer. 

I think I've spoken a lot elsewhere about emotional regulation and some of my problems and helpful tools in this area, so I won't go into that now, but please do ask if you'd like to know about that.

Factors such as tiredness, emotional dysregulation, sensory dysregulation and non-availability of routines (including unprectictable events, changes to plans or unfamiliarity in some aspect of my situation) can affect my executive functioning levels and therefore my ability to a) complete tasks at all, b) do it in a timely or effective fashion, c) prioritise usefully or d) make decisions. 

Everybody has these experiences from time to time, perhaps when overtired or stressed - we all struggle to make "wise" choices when in these states and perhaps spend more or drink more than we would otherwise. We forget what was on the shopping list, or to pick up the shopping list. We lose one of the tasks when multitasking. You need to stop, retrace, recoup, and continue. That is a laspe in your executive function - just imagine every task being like that every day, and finding it much more difficult to get back on track afterwards!