Compression

As I mentioned in Too Feely, my taste in clothes is driven largely by comfort and not by style. Those who know me will probably, if they try to imagine me standing in front of them in my normal attire, picture someone who nearly always wears loose elasticated jogging style trousers (shorts in summer), t-shirts (vest tops in summer), and a fleece and maybe a scarf when it’s cold. All of these clothes are usually selected for their loose comfort, their lack of restriction, and, often, their softness. I do occasionally dress up for dinners, concerts and parties, but only usually for short spells of time, and not on a daily basis.

So why am I sitting at my computer, typing this, wearing tight compression sportswear that’s several sizes too small, with an elasticated waist support fastened tightly around me on top of the already compressive clothing? And, more to the point, why am I not feeling sick or in pain or desperate to rip all my clothes off? Why did I CHOOSE to put these things on this morning?

The short answer is “I don’t know”. I haven’t a clue why, sometimes, I am desperate for the feeling of pressure against my body and I crave it and it calms me. Sometimes, when bashing myself against the sofa for half an hour doesn’t work, and drinking several glasses of wine doesn’t work, and thinking mindfully doesn’t work, and everything else I can think of doesn’t work, being compressed DOES work, and it works beautifully well. As I’m sitting here, wearing clothes that I usually wouldn’t go near on an ordinary day, I feel grounded and reassured by them. I feel the anxiety receding. I feel that the deep even pressure from my chest to my ankles is something beautiful, and, truth be told, if I could make it even firmer, even stronger, then I would (I’m limited as to just HOW tight the clothes can be by the need to be able to take them on and off)!

I’ve written before, in poem form, about the weighted blanket I bought in January and how much the pressure from that helps me and calms me. My use of compressive clothing as a calming mechanism since discovering I’m autistic predates my use of weighted items by several months. I wrote the following back in October 2016, in what essentially became a journal that was the predecessor to this blog:

29 October 2016

Weird probably autistic thing number whateverwe’reuptonow.

Mainly noting here for collating evidence / stuff to write about on future blog / in future book etc. And just because this is becoming a chronicle of experiences.

I always wear loose clothes. I know I do. I hate my clothes being tight. So I wear loose soft ones with all the labels cut out.

This afternoon I’ve been pretty weird. On my own in the flat (he is working) and also had a fairly tense week (water getting repaired), out yesterday, loads of stuff on the form (which is getting there – I hope to have it in the post on Monday), and a moderately stressful time.

So this afternoon was letting go time. I knew I felt very very anxious. Very not calm. Rocking and bashing myself on the sofa and stuff in the dark helped quite a lot. But not quite enough. It didn’t quite do what I needed.

I suddenly realised that what I really really wanted was pressure. To be wearing something tight. That was the signal every bit of my brain was getting from my body. I want pressure. Really really want pressure. The message was clear.

So it is Saturday evening and I am home alone wearing my tightest most compressive running trousers and a pair of compression calf sleeves. I don’t own any normal tight clothes, but I do have kit. So I am wearing the tightest kit I own.

And it feels beautiful and wonderful and I feel calm. And right. Sitting here in compression kit.

This is all really really odd.

But it is what is happening. And my promise to myself when this whole thing started was to do it properly. To listen to the signals I was getting from my body and my head. To work out what is needed. What helps. What is all this about.

If the strategies sometimes include wearing compression kit, then so be it. The calming effect is magical.

Back then I just used the smallest running kit I had lying around (and because I’d put on a bit of weight over the preceding year it was slightly too small and therefore helpful). Very soon afterwards, after a few more occasions where I’d hunted around in drawers and things to find other clothes that were fitted and even and a bit too small and decided that wearing compressive clothing from time to time really was going to help me, I deliberately went to my local sports store (as a runner I’m massively familiar with the place as I’m always obsessing about new kit and so on) and selected several items of clothing and various weightlifting things and so on and they’ve become part of my life now.

I did a bit of hunting around on the internet and found that liking compression from time to time is, indeed, not unknown among autistic people. I found tales of people going out with compressive sportswear under their clothes, mentions of corsetry being worn by autistic people, accounts of autistic kids wedging themselves under mattresses, and, of course, information about Temple Grandin’s squeeze machine which it seems she invented to get the sensory feeling of being hugged but without the need for human contact which some autistics are uncomfortable with.

I’m not uncomfortable being hugged by other humans – far from it, although I do have occasional times when I prefer not to be hugged (they’re quite rare), and I’m absolutely not a great fan of being tickled or very lightly touched or being breathed on or similar. But other humans are not always available, and sometimes I do need to be both alone and have that reassuring feeling of EVEN pressure against me (the evenness is very important – I absolutely don’t like straps or inconsistent pressure or anything that feels like it’s digging into my skin).

The research I’ve managed to do so far suggests that, just like bashing myself against things or hitting parts of my body with my fists or lying under a weighted blanket, that this need for firm consistent pressure is to do with balancing the proprioceptive system – the sense that feeds back to the brain precisely where the body is in space, that tells you where your legs are under a desk even when you can’t actually see them. It seems that, like all the other sensory systems (see Too Bright and Too Loud) autistic people’s proprioceptive systems can be a bit skewed and that seeking pressure (or indeed, being unable to tolerate it) is not uncommon.

And so, wearing compressive clothing when I feel the need has become part of my normal life over the last six months. And, as I hunted around last October for those few items of “too small” clothing I found there were a few. And all my life I’ve had occasional times when I’ve worn them, for, it seems no reason at all. I’ve just got up from time to time and thought I’d wear the tight things today.

Then, a couple of days later, sitting wearing the newly acquired sportswear and a waist support belt, I was suddenly hit with a really strong memory – a memory triggered not by conscious remembering, but by feeling, in the same way that starting to flap my hands had triggered this sort of “feeling memory”. I wrote it up in the journal:

31 October 2016

As I calmed down and felt the pressure from the belt I remembered having a big wide belt when I was a teenager. It was the 1980s so belts were big and wide.

And I remembered sitting at my desk in my bedroom as a teenager wearing some too small shorts and the big wide belt done up very very tight and pushing my chair right up to my desk.

A memory completely forgotten until today.

That was one of the ways I coped back then. 30 years ago. And I wouldn’t have had the first clue why.

This continues to be an extraordinary and revealing time.

I know this memory must have come from some time in my early teens because I can remember the position of my desk and the décor in my bedroom. I also know that I’d had no instruction to wear a wide belt done up tightly for any reason (probably, had anyone known I was doing it they’d have tried to discourage rather than encourage it anyway, so I expect I concealed it, probably afraid I’d get into trouble), and I had no access to anything like the internet or any other influence. But the memory that was triggered last October has reminded me of similar times that go right through my life, through student days, through most of my adult life, right up to the present moment.

And so I shall continue to wear what I am wearing right now until either I need to go out or until I receive the signal from my body (which can often be sudden and dramatic) that says NO MORE! Interestingly, the feeling of needing pressure of this intensity can vanish almost instantly, and when it does, I listen. I’m working out ways of making the system as flexible as possible and of doing what is most needed when it’s most needed, and I’m starting to observe how it all works and still trying to understand what it’s all about!

Hand Flapping

I wrote the words below (in italics) around eight months ago – before diagnosis, before forms, before I had any interaction with autistic communities online, right back in the early days of the “autism hypothesis” as I was then calling it. At that time I’d only just contacted my mother to start to ask about my early childhood, I’d heard the word “stimming” but didn’t really understand it, and I had no knowledge of autistic burnout or realization that I was experiencing it and had done so before.

I was yet even to receive the forms from the triage service or do any autism “tests” beyond the online one that I mentioned in The Discovery. I was still only just acknowledging that I even WAS autistic, and at that point I was only talking to a very small number of people about it and really only had Google and a couple of books to help me.

At the time I wrote the words I remember being really freaked out by them, even though I’d felt the need to write them. The whole concept of “just letting stuff happen” was so alien to me, having spent my entire life fighting to be “in control” and I was right at the start of the process of discovery. I had only just, a few days earlier, typed the words “I am autistic” for the first time and they still felt very foreign and strange and the whole notion of me being autistic seemed seriously wild – I didn’t spend a few years wondering or suspecting that I might be, as some people do – I’d gone from completely clueless to almost certainly autistic in the space of only a few weeks and my head was still reeling from the experience.

I didn’t even initially discuss them with either my husband or the friend with whom I was most closely corresponding about the possibility that I was autistic. I remember sending a rather coy facebook message to that friend saying I’d discovered something, but, initially it seemed too radical to say what – I’ve come a long way from then to now and my perceptions and levels of confidence have changed so much that I’m now publishing the words, which I couldn’t even send to my friend back then, openly on the internet!!!

But right from the off I knew I wanted to investigate the whole thing thoroughly. I wanted to experiment, to find out just what was going on. It was already obvious that the jiggly leg and the constant sitting with my legs folded under me and the gentle rocking and so on were likely autistic things and so I deliberately set out to learn to listen to my body and to what it wanted to do and to allow myself to experiment to see what happened.

Had I grown up knowing I was autistic and been part of any autistic community, this stuff might have been so commonplace in my life that it wouldn’t even have featured as a “thing to discover” but to me it felt new and big and important. I remember, much later, reading an account from another late diagnosed person saying it took them 6 months from diagnosis to reach that particular point. It took me only a few days from the point that I started to accept that I was autistic!

But I was deliberately experimenting. I am also pretty lucky in that I’m not the sort of person who feels shame about lots of stuff – I don’t have a deeply ingrained sense of “this is wrong” because I’ve always lived a somewhat random life, rather a long way from the middle of the “bell curve”! I knew by my teens that I was never going to be one of the popular “normal” ones and there’s no doubt that as I’ve got older I’ve increasingly adopted an attitude of “if they don’t like me as I am then I’ll just move on and not bother about it”. I have plenty of folk who do seem to be amused or entertained by me enough to stick around and whom I find interesting to be with so it’s not a big problem.

But, internally, this was for me, a big milestone, a big thing for me consciously to rediscover. And I remember, having typed the words “my autistic body” (perhaps an odd thing to type but it was what it was) looking at them with a mix of utter “this is so freaky and odd and new and scary and but ME?” and total “this is so comforting and reassuring and exciting and wow can this really be true” all at the same time.

September 2016

So, I’m staying overnight at my friend’s. I wake. It is 4 in the morning. When I wake I am overwhelmed with anxiety. Understandable. I’m away from home. I had orchestra. People. I talked a lot about autism to my friend yesterday afternoon and evening. My life is in such a period of upheaval and learning and turmoil. The revelations about my 4 year old self are still shocking me and rebounding inside my head.

I feel sick. Really really sick. I have felt this way here before. I have usually put it down to a large meal in college or too much alcohol. Neither of those is true for last night. A fairly small supper (I have learnt to eat small when things are unfamiliar because I know being out of normal routine is often stressful and makes me feel anxious and sick, so less food offsets the feeling).

Usually at this point I would try to keep calm and lie still. Breathing exercises. Mindfulness. Sometimes it works. But often I cannot get calm. The sick feeling rises. As I am emetophobic I get into a feedback loop. Sometimes I manage to fend it off but spend the next hour or so lying there feeling shaky and drained. Sometimes the worst happens. I end up in the bathroom and return, tearful and traumatised, to bed, where I might then drift into a troubled sleep, but the experience stays with me unless I spend the next few days working on blocking it from my mind.

Since it became apparent that I am autistic (there, I said it again) I have been experimenting. I have never known why I sit on the sofa at home and gently rock, but I do. It is calming. Maybe there is more in me. Something else. More long-repressed behaviours. I know I always fiddle with things. My hair. Pens. Cords. But maybe there are other things that are part of me that I am yet to discover.

I lie in the bed and decide to try something. To stop trying any sort of control over my body and mind and see what happens. My body starts to move. Rhythmically rocking backwards and forwards. It feels right. Then the strangest thing happens. I want to flap my hands. Really really want to. My arms emerge from under the covers. My hands begin to flap, fast, furious. I don’t know for how long, but the nausea and sick feeling subsides. I calm. Tears run down my face. I know I am going to be OK now. I flap a bit more, just to check. But I am calmer. The anxiety is reduced. I finally lie still.

I have heard mention of hand flapping. Has that found its way into my mind. Am I “trying” to be autistic, to prove something to myself? Au contraire, I was actually not trying to do anything except what my body felt it wanted to do. It felt natural. Normal. Although massively at odds with everything I have learnt from society over the last 45 years.

I wonder if my particular flapping is an autistic thing. So I grab my phone and Google autism hand flapping. My phone knows how to spell autism these days. I find a video of a man demonstrating flapping behaviour. It looks right. I read on a website that autistic children flap their hands and adults may go back to the behaviour as a way of relieving stress and anxiety. I don’t know if I am going back because I don’t know if I ever did as a child. Maybe so, but if that was the case I was almost certainly told to stop. Suppress. Do not exhibit abnormal behaviour. Nobody would have known back then what it meant.

I am slightly creeped out by the experience. The sense of calm the flapping induced was profound and remarkably quick. It clearly stimulated something that stopped the sick feeling, stopped the acute anxiety and stress. I feel very strange about this. I know it is an odd behaviour. Not something I have done in this way before. It was what my body wanted to do. And it worked.

I wonder what will happen over the coming weeks. As I come to terms with my autism what else will be revealed? I find the term “stimming” strange and unfamiliar. It was not a term I knew until very recently. Again, I worry that I am making myself autistic to fit the model. But every time I return to the fact that I have been autistic all along. It is not that I fit the model. It is that the model fits me. That I have found myself. Discovered needs in myself that were hitherto hidden. Years of lying in unfamiliar beds at night feeling sick. And I didn’t have a way of dealing with it. Now I do. That was what my body wanted. So that’s what I did. My autistic body. My differently wired head. My new life. My new start.

I am 45 years old and I am at the very beginning of my journey of learning to live like me. I have had fleeting moments, over the past week, where I have thought “when will life return to normal”. I know that old normal will never return. Yes, there is a part of me that is deeply unnerved by this whole autistic world. It’s so new. It has all happened so fast. Where is my old familiar life?

The old life is gone. I would not want it back.

***

Two Days Later

I have become a hand flapper. It has become important to me. I also like to rock, and to do things with my fingers, waggle my feet, bash my legs against the sofa back, and, of course, allow my leg to jiggle, rather than making the effort to stop what is often involuntary movement.

I was flapping tonight. Not because I was feeling particularly bad, but just to keep myself calm and to explore further the effect it has on me. I flapped for slightly longer than before. I felt a feeling in my fingers that was familiar, and pleasurable, and special. And it triggered a memory from long ago, very long ago, of the same feeling and I realised:

I. Have. Done. This. Before.

The realisation hits me. I did this as a child. I wonder why I stopped. Did someone tell me to stop waving my arms around? Did I gain awareness that other people didn’t flap their hands and as I was learning how to live by copying and observing I stopped? Did some kid at school bully me for it?

I wonder when it was. But I know now that I flapped my hands as a child.

Mind continues to be blown by all this stuff.

Breathe for goodness sake, breathe!

It turned out that I hadn’t just been flapping my hands when I was younger. As soon as I started to relax about it and consciously allow myself flap in front of my husband he said “Oh, you’ve always done that – though not quite as obviously as now”. Things I’ve always done with fingers and wrists when trying to make decisions or when stressed turn out all to be part of the same thing, but just on a smaller scale. I’ve since discovered that there are all sorts of times when I flap my hands, and these days I often hardly notice. Sometimes it’s when I’m happy about something, sometimes it’s for anxiety relief. These days I generally just go with it!

And, like so many autistic things, it possibly looks a little unusual from the outside. My husband (who also flaps his hands from time to time) frequently tells me I look like a T-Rex (I’m totally cool with that – I was a mad dinosaur fan as a kid and am still somewhat interested in them), and I suspect that some folk might find it a bit odd, but from the inside it’s just a natural form of expression and something that’s now very much part of my life.

The only thing I do have to make myself consciously remember from time to time is not to flap my hands while I’m holding a drink – that doesn’t work out well!!!

Speech Levels

During the days following my first autism assessment, the one that went terribly wrong and during which I was declared “too articulate” to be autistic, I did quite a bit of googling of various things in an attempt to establish whether I really was simply going crazy. I found something posted on a forum somewhere, I can’t remember where, about autism and speech. The person who’d written it described how their speech varied and assigned different speech capabilities “levels” from 1-4. Much of what they’d written aligned with my own experience, and it helped me to understand my speech capabilities and how they work.

I have since thought about this quite a lot and have eventually come to the conclusion that I have 5 main levels of speech. I have very little control over which level I’m actually at, and if I try to force speech when it isn’t there it can make me feel really very unwell – these days, now I know what’s going on, I force it less and less, just accepting that my speech isn’t always as it might be expected to be – it’s no big deal, and just allowing it to be as it is (or, indeed, isn’t) is actually starting to allow my health to improve somewhat, even though it makes things a bit more awkward socially.

Interestingly, my husband has always said that when I’m ill or tired or really low and depressed my speech becomes monotone, so I evidently have noticeable speech difference even just in tone of voice at these times, especially once I’m home in a safe environment and not deliberately trying to inflect my voice in the way that I know I should from years of conscious learning. The assessor who diagnosed me as autistic also picked up on the fact that I don’t have the sort of variability in vocal modulation that might be expected – and my range of vocal expressiveness is much more formulaic and limited than most people’s. I, of course, had never noticed this, since my normal has always been my normal!

So, what are my five levels of speech?

Level 1
Fluent easy speech. As far as I know, this level of speech would appear totally typical from the outside and nobody would guess I had any speech issues at all (except, maybe, that I might appear exceedingly confident and dominate the conversation). It feels natural and not difficult and doesn’t use much energy. It might, I suspect, occasionally be a bit too fast, loud, or intense (this, I have been told by others, and I have always linked to the hypomanic phases of bipolar disorder in the past), and it’s more the sort of speech that I use when recounting a story, giving a lecture, or telling someone about something that’s already formed in my head or about which I am knowledgeable and confident. It hardly ever happens if there is interaction with anyone else, and it can be disrupted very easily if anyone stops me, interrupts me, or asks me a question. But the words flow just fine and it doesn’t feel difficult or use a lot of conscious energy.

Level 2
Fluent difficult speech. To the outside observer, I expect this level of speech appears exactly the same as does that of level 1, and, again, nobody would guess I had any issues at all. However, once interaction with someone else happens and I have to listen and interpret as well as talk, or I’m forced to start improvising and talking about something I hadn’t prepared for, from the inside it feels like much much harder work. Being able to continue to sound fluent and remembering to inflect my voice and use the right sort of language and so on is extremely tiring. Once I start to tire I’ll often get quieter and contribute to the conversation less. This is the sort of conversation that feels very different from the inside, but gives very little away to the outside observer. It’s probably formed the majority of my interactions with other humans over my lifetime, and although it serves me well socially and gives me quite good abilities in many ways it often makes me feel dizzy and sick, and if combined with sensory overload can often lead to meltdown if I try to maintain it for too long. It can leave me utterly exhausted, and the effort of producing it often means I need a full day to recover from the exertion of a fairly ordinary social occasion.

Level 3
Idiosyncratic speech. This is still good enough that I can communicate effectively, but, moving from level 2 there would be a number of slight oddities that could be noticed from outside. My word order sometimes gets mixed up (I can hear it as it emerges), and I start to substitute words for more readily accessible ones – I might, for example, be unable to think of the term “extremely bad” and say “very very very not good” instead, simplifying vocabulary. I’ll also simplify my tense structure somewhat. I’ve spoken like this within my own home and to close friends for years, but have usually tried to maintain level 2 out in public. At this level I also often leave out words such as “please” and “thank you”, because I am using speech purely for communication and someone like my husband knows that they are meant and I don’t need to use the extra energy to say them. My best friend informs me that he has heard many examples of this sort of speech over the last couple of decades. It has always simply been taken to be me being a bit eccentric or quirky, or even as some sort of humour. It is easier than maintaining level 2 though, and once I get to a certain stage in any sort of public conversation I will, again, simply be quiet.

Level 4
Fragmented speech. At this point it’s fairly certain I’ll eventually lose speech completely, but I CAN still talk, albeit in a way that is unmistakably atypical. I can use single syllable words, or sometimes ones with two syllables (but slowly). I will usually give up worrying about tenses, and there will be no noticeable sentences. It is the most basic spoken communication, but it’s sufficient for me to say, for example “drink” to someone and to get a drink. It is, however, really really effortful. Each syllable has to be deliberately constructed, consciously and with great care, as if learning a brand new foreign language. It feels like there is some sort of faulty connection in my head, and that connection is failing. If I need to communicate anything other than the most basic information at this point I will be typing on my phone and the person with whom I’m communicating will need to read what I’ve typed to really understand what I’m trying to tell them.

Level 5
No speech. This is when the words are gone. Just gone. If I open my mouth and try to make words, I cannot. It’s not a choice. It’s not even, like in levels 2 and 3 above, a strategy to maintain my energy levels. I can still make sounds. I can still hum tunes (wordlessly). But I cannot produce speech. It’s as though the connection between my brain and my mouth has been unplugged. I can usually still type perfectly coherent language (there is a disintegration of typing language sometimes, but it is much rarer) and all my communication will be by facebook message or typing into my phone or some similar method. However, even when I cannot speak at all and am totally mute, I can usually understand what is going on around me just as well as I can when my speech is at level 1. There is no loss of thoughts in my brain, no issue with being able to formulate arguments or learn or think or anything else. The thoughts are all there – I just cannot articulate them via my mouth. “No speech” is very much not the same thing as “no thoughts” and unless I am so deeply shutdown or in the midst of a meltdown or other crisis, I will be absolutely aware of what is going on around me – just not able to respond with speech.

So my speech varies between “articulate” and “nonverbal”. It’s not as simple as an either/or, but is a sliding scale, and I move between the levels fairly often, depending upon my level of tiredness, my mood, my circumstances, who I’m talking to, and what the sensory environment is. Most of this movement is beyond my control – if my words start to fragment and depart there is nothing I can do about it. I have, in the past, maintained level 2 rather heavily as part of my mask – the price for doing so is quite sizeable and leads to situations such as that described in Sudden Illness. It also results in the immense exhaustion I’ve felt over the years, and I’ve found that just allowing myself not to worry about speech and to let it ebb and flow as it naturally does has already helped my health and energy levels enormously. There is a sense of inner peace I get once the words completely go, a sense of calm, recharging, and stopping fighting.

In the past I didn’t know why, but I knew that once the socialising had finished, once I stopped trying to talk to people, once I went home from the restaurant after an evening sitting outside on the pavement, shaking and feeling terribly ill, once everyone else had gone home and it was just me, I breathed a sigh of relief and started to feel better. I always got a certain feeling, one that I’m still struggling to describe, but I can identify very easily, once I was alone and starting to feel better. It’s only recently, as I’ve been seriously experimenting with trying to speak, that I realise that is the feeling of speech being gone. Maybe one day I’ll be able to describe it a little better.

As I said in the previous post, this is still something I’m trying to analyse and to figure out. I’m still working on how I communicate to the rest of the world that speech is often either very hard work and requires intense concentration or is not possible at all. The amount of time I spend at each of the five levels I’ve outlined above is still fluctuating as I continue to adapt to my changed life and as I continue to recover, slowly, from the burnout that was already starting around a year ago. This is very much an ongoing process for me.

Losing The Words

I have known two things all my life (or, at least, as long as I’ve been old enough to know anything at all, which is probably somewhere around 40 years or so). The first is that when I get really really angry (as opposed to just very angry), I stop the shouting and the noise, and I show my anger by being completely silent. The second is that when I’m really really really tired (as opposed to just rather worn out and wanting to go to bed), I am also totally silent and I need to get away from everyone and just curl up in a corner and go to sleep.

These two extremes, the furious anger leading to silence, and the utter exhaustion leading to silence have always been part of my life. The first situation, the extreme anger, has always been put down to stubbornness, stroppiness, and a general wilfulness and unwillingness to compromise or to say sorry. I remember numerous occasions where I was utterly steaming mad and my reaction was to scream and scream and then to just run away and go and be completely silent by myself. I recall an argument with my father, sometime in my teens – at the time I kept a diary, and I remember writing up the experience afterwards and being frustrated that “this was my Dad, who usually understood me and was so like me and I opened my mouth to try to talk to him and no words would come out”. I can picture the scene now, me lying on my bed in my parents’ house, following some furious argument, the subject of which I cannot remember. I just remember feeling really really bad and that I couldn’t make any words come at all, about anything, not to apologise, nor to continue the argument, nor anything.

Equally, there have been times throughout my life when I have collapsed with total utter exhaustion. My mother and I were discussing these times recently, which have been known since my early childhood as “zonking”. She cannot remember exactly when “zonking” started, but she thinks that it was sometime after we moved house when I was 5 years old. I remember “zonking” as a child. I remember the absolute feeling of exhaustion, of being unable to move, of, sometimes, literally, lying down wherever I happened to be at the time. If I tried to keep going I would be sick, and would feel like I was terribly ill and had something terribly bad happening to me. A couple of months ago when I was discussing these episodes with my mother, she said that she remembers how my eyes would glaze over and I would go completely silent and unresponsive and I absolutely refused anything at all to eat. She said that the first few times it happened they were rather worried about it because it seemed so strange, but that they observed that if they simply put me to bed and left me with a glass of water in case I got thirsty then I seemed absolutely fine again the next morning. So nothing was done (and, to be honest, nothing really could have been done – if they’d taken me to a doctor in the 1970s and described these episodes then the doctor would almost certainly have been as mystified as they were).

And “zonking” was just part of my life and it always has been. I had these phases where I needed to go to bed and be silent and alone and I couldn’t interact with the world and I couldn’t do anything about it. It often occurred at times when I’d been out a lot and very busy, or when I’d been to parties or was away from home. It happened throughout my early adulthood and I simply went home from wherever I was and put myself to bed. It happened after I was married and I simply told my husband that there was this thing I did called zonking and that there was nothing to be done but to leave me to sleep it off and I didn’t know why it happened or why I was always silent, but I just accepted that it was a thing I did.

And for over 40 years I was a silent angry person who zonked from time to time!

Until I started to investigate autism. Until I ran away to hide in a shed in the summer of 2016 and didn’t let anyone know where I was for a while because I knew I couldn’t interact with them. Until I told someone by facebook message not to send any food over to my tent yet because I knew I wouldn’t be able to thank them for bringing the food. Until I realised that the times when I had this severe exhaustion were times not when I WOULDN’T talk, but when I actually COULDN’T talk. Because I started to try, even though I didn’t feel like it, and I found that the words were gone. I hadn’t previously attempted to talk at these times (a few “arguments” aside, when I just assumed that being cross rendered people “speechless” and that was what was happening to me) because I’d just run away or gone to sleep or cried or whatever. But as I started to experiment and to see what was possible, I realised that there was a reason I’d been running away or taking myself to bed or whatever all my life.

My. Words. Were. Gone.

Since I discovered this I have been doing experiments, such as described in Can I Sing? I have tried to talk to see what happens – I can make sounds perfectly well, but I cannot make words. The revelation, after over 40 years that I have been having nonverbal (or, probably more accurately, nonspeech, though I believe nonverbal is the usual term) episodes all my life, is quite startling.

And, although being unable to speak might, at first, seem odd from the outside, and, in some ways, can be frustrating because the world is so geared up towards speech, it DOESN’T FEEL BAD. In fact, what makes me feel ill, and sick, and distressed, is the effort of trying to keep talking when my words have gone. When I try to continue to be social and to act “appropriately” I start to get ill, as I described in Sudden Illness. When I let go of the speech, and just abandon spoken words, the nausea, the bad feelings, and all the illness feelings go away, and I can feel my system start to recover, either from the meltdown (in the case of the “angry silence”) or the shutdown (in the case of the “extreme exhaustion”).

I can also often feel the slide down into wordlessness. My sentences start to jumble and my speech starts to become unorthodox and to fragment (I’ll do another post about speech, and my different levels of speech sometime). After a while I become monosyllabic, and then, gently, the words just go, sometimes for several hours at a time, and even overnight. Although my written words can often be quite a big effort during this time and don’t always flow fluently, I am often able to communicate by typing written words when I am completely unable to produce speech, as I have described in Silence.

I can also feel the return. Initially the speech that returns isn’t totally fluent, and is a bit disjointed, with one syllable at a time. Then it gradually builds up until it is fluent again.

I am still exploring this. I am still discovering. I am still analysing my speech patterns and still experimenting. I know the feeling of being unable to speak rather well – I have been experiencing that particular feeling all my life – but I am only just starting to understand it.

Strategy Deployment

Yesterday I went out again, to something social, where I met quite a lot of people, and where I was out of the house for quite a lot of hours. I went to an afternoon symposium, a series of lectures, then to dinner, once again in my old college.

I employed similar planning strategies to those described in Out to Dinner: a couple of days’ rest beforehand, comfortable clothes, stim toys, dark glasses, and plans for an easy couple of days afterwards so I knew that I could take my energy levels into the red zone if necessary because once I was home I didn’t have to do anything at all except breathe (and that’s something that usually happens without my having to think about it).

Additionally I took some attenuating ear plugs (originally bought for potential use in noisy orchestras and recently discovered in a pile of stuff) and my recently acquired ear defenders, just in case I found a way that I could usefully use them.

It was an interesting afternoon and evening in many ways. It was interesting in the ordinary way in that I learnt some stuff from each of the lectures. I also saw several people I hadn’t seen for a few years, and some others I’ve seen more recently, and it was good to catch up with them. And, of course, it provided me with an opportunity to continue analyzing what I can cope with when I’m out in the world, and what I can’t.

Apart from the dark glasses and slightly more casual clothes than was the norm, the first thing that might have been described as slightly out of the ordinary behaviour was the way I sat during the lectures. I took my boots off and sat with my feet tucked under me, my legs up close to my body, in various formations throughout the afternoon. I nearly always sit, by choice, in some variant of this position.

Very interestingly, I went to a similar symposium in that very same lecture theatre a couple of years ago. I remembered sitting in exactly the same way. I wasn’t wearing dark glasses, but my clothes were still slightly more casual and I sat with my feet tucked up under me in the same way. And that was years before I knew anything about autism, about the beneficial effects of “pressure stimming” (I still have a whole blog post to write about that stuff sometime), and before I realized that I was doing something, perhaps a bit socially out of the ordinary, because that was something that my body needed to do in order to feel OK.

(As an aside, I made no other adaptions on that occasion a few years ago – and I remember it being one of the nights that I woke up in the small hours afterwards feeling sick, shaky and very very wrong – that was always the norm for me after such events. Now things are changing.)

My first real break with “doing what everyone else was doing” was at the tea break between sessions. I used the strategy that I’m now getting used to during the breaks of orchestral rehearsals – get myself a cup of tea then get out of the room with the voices and the noise and the crowds of people as quickly as possible. I went to stand outside in the quadrangle. I was joined by a friend (the one mentioned in the first sentence of Out to Dinner), who gave me a biscuit (a good idea, since I hadn’t yet managed to eat) and asked whether I was OK with him being there or whether I needed to be alone. Since I’m comfortable with him and he knows what’s going on in my life I was happy for him to stay. It wasn’t difficult out in the cool air away from the artificial lights and the noise of too many voices.

When we went back for the second session I knew that my senses were already beginning to tire as the sounds of the voices of those speaking seemed much much louder than they had done during the first session. I decided to try the earplugs. They helped. And not only did they help with reducing the volume of the speaker’s voice to a manageable level, but they really really helped with one of the most painful noises of all – applause. I’m now trying to work out whether there’s any way I can use them in concerts, because applause is a sound that I’ve always found, at best, unpleasant, and at worst, really very painful.

I also felt perfectly justified in wearing something in my ears to alter my hearing perception because there were several in the audience also wearing things in their ears – though they were trying to enhance their hearing and I was trying to reduce mine!

Interestingly, I also looked round to see what other people were doing in terms of stimming. I noticed someone rubbing their hands, someone playing with a pen, and someone jiggling their legs and playing with the hem of their trousers! I’m noticing all these things much more nowadays (again, there’s a whole blog post to be written about this – I have so many things I want to write about, but I can’t make all the words at once)!

After the second session there was a drinks reception in a very reverberant space. I stayed for only a few minutes because I knew it was seriously overtaxing my system. I left everyone else to it and went outside and sat on a step, rocking, in the twilight (and the freezing cold – really should have taken a coat) and put my ear defenders on. I was there for maybe half an hour until the cold got the better of me and I ventured back inside, still wearing my ear defenders, and eventually found a couple of friends and we headed off to dinner.

That time alone, cutting the world out, making everything as silent as possible (not completely silent, but significantly better), and stopping all interaction or worrying about sitting still, really really helped. I would have liked to be at the reception. I would have liked to have been drinking wine instead of elderflower fizzy stuff, I would have liked to be networking, chatting to friends, catching up with everyone, looking at the exhibits and so on, but I am learning that this is the sort of thing that I need to ration very very heavily in order to be able to stay well. This is one of the ways in which I am, perhaps, most disabled – I cannot take part in events such as noisy drinks receptions for any length of time unless I accept that it will have a seriously negative impact upon my health. I have long known that parties and so on tire me beyond belief and cause me to become seriously unwell afterwards – I do at least now know why and I can start to control things a bit.

Refreshed from my “time out”, I was then able to go into dinner, chat to people around me with some confidence, and to spend an evening in the Common Room, which actually turned out even to be enjoyable. My best friend ensured I was sitting in a reasonably advantageous position at dinner (as close to a corner as possible to avoid sensory input from all directions), I took care not to over eat, as before, and later, when I started to feel slightly dizzy and unable to comprehend words while standing and increasingly failing to take part in a group conversation, I went to sit down. I’ve also discovered that I find conversation much easier when I’m seated – If I’m not using energy to stand then I have more available to be able to convert thoughts to words!

So this week’s “event” went well. It was also easier than previous times doing similar things have been. I suspect this is partly because I’m starting to see a bit of recovery from burnout, partly because I have a new-found confidence following my diagnosis (more on that in a future post), and partly because I’m learning what strategies work to help me get through such an event without ending up sick for days afterwards.

Admittedly, I had to adapt my behaviour quite considerably yesterday, I didn’t get out of bed until after 2pm today, and I wouldn’t have been able to hold much of a conversation this morning (I tried a little speech earlier but it was really hard work and since I’m here alone I didn’t even bother using that amount of energy for anything more than experimental purposes), but it’s progress. It’s working out how I can best function in the world and get the most possible out of life without destroying myself in the process!

Looking at Eyes

I was chatting on Facebook messenger with a friend of mine. We’ve been friends around 5 years, and she is probably, after my husband and best friend, the person I see most regularly in real life.

“So what colour are my eyes then?” she asked.

I paused for a moment, thought about her hair, which she dyes dark red, and it seems to match her skin, so I guess that before she dyed it it must have been dark. “Brown!” I respond.

“Er, no, they’re blue actually.”

She then asked me about the eyes of a mutual friend who I also see quite a lot in real life. Even darker dyed hair. I was confident about this one. Much more obvious. “Definitely brown,” I said.

“Nope, wrong again, she’s another like me with dark hair and blue eyes, except that hers are greyer than mine.”

I really wasn’t very good at this eye colour game. So far 0/2 on the eye colour score!

“Her mouth wiggles a bit at the corner sometimes and your teeth point inwards,” I proffered, in an attempt to show that my observation skills weren’t completely up the spout and I hadn’t been ignoring my friends for the last 5 years!

She laughed! And told me that this was further proof of her observation that even before I had the slightest clue that I was autistic my eye contact skills were, at best, somewhat idiosyncratic!

***

I was in the kitchen with my best friend. He asked me if I knew what colour the eyes of a mutual friend of ours were.

I thought about it. Our mutual friend has grey hair. I think it might have been dark when he was younger. Somehow I couldn’t quite imagine what colour eyes he might have though.

I admitted I didn’t know, and that if someone really needed that information from me then the only way I could supply it would be by looking at a photograph.

***

I mentioned eye contact in an earlier blog post. A discussion ensued on my Facebook wall. Somebody I went to school with between the ages of 13 and 18 commented on the discussion. She clearly stated that she remembered that whenever she looked at me I would look away very very fast. She said she thought at the time it was something that “clever people did.”

***

My husband says that when I do look in his direction I then don’t look away when most people would. He says it’s as if I point my eyes in that direction and then just forget and leave them there. It always slightly freaks him out!

***

So, it seems that I have been “faking it” as far as eye contact is concerned, probably all my life. I’ve certainly never been able to glean information about the state of a person from their eyes, beyond such things as closed = maybe asleep, or tears = maybe sad or happy. I’ve also observed that even when watching television I don’t look at eyes. I go through my life and think of people I know or have known quite well – relatives, friends, former colleagues. I cannot picture what any of their eyes look like. I know they must have eyes, but I cannot visualise any of them. But I can easily visualise mouths and noses, and, in some cases, ears.

This faking really has been fake. Even when I’ve apparently been looking at eyes, I haven’t taken in any information about them. I cannot picture what my own mother’s eyes look like. Not a hope.

This is still news to me. I wasn’t aware of anything beyond remembering instructions given to me as a child, probably by schoolteachers (I can’t remember) saying “Look at me when I’m talking to you!” So I did as I was told. For the next 40 years.

So why have I been faking it? Why is looking at eyes so weird?

I believe that the schoolteachers probably wanted me to look at them because they thought that it was an indicator that I was paying attention (which it wasn’t – I was, and still am, perfectly capable of paying attention to what someone is saying without looking at them – probably rather better that way in fact). I have also looked at fellow musicians when playing chamber music and so on, and again I think it’s just a sign to people saying “I know you’re there, I’m listening to your part, and I’m paying attention.” It doesn’t actually help me to pay attention, but I know that people think you’re paying more attention if you look at them. It’s a learnt fact and a practised technique. It’s been a large part of the mask. But as far as communication is concerned it’s meaningless to me except to show that I’m paying attention.

And, it seems that while I’ve been faking some sort of approximate eye contact I’ve been using massive amounts of energy to do so (as described in An Experiment) and been pretty much avoiding the real thing whenever possible.

And all this while not even knowing I was autistic. I had no reason to avoid eye contact. Not anything tangible. But I did this fake thing for decades. So it was obviously something that wasn’t quite comfortable for me.

And so recently I’ve tried to describe what actual eye contact (from the few moments it has happened unavoidably and sort of by accident, when I haven’t moved my gaze fast enough) actually feels like to me.

And the best I can come up with is that it feels a bit like being naked in public in front of an audience somewhere very very important and totally overwhelmed in a way I can’t describe, and a bit like being poked with a sharp stick.

Which, when I put it like that, explains perfectly why I’ve faked it all my life and why I will now only even attempt it when absolutely necessary. Eye contact might be some wonderful communicative thing in some people’s worlds, but in my world it’s just rather creepy and uncomfortable.

I’m eccentric, but not “get naked in front of an audience until my brain explodes” and “be poked with a sharp stick” sort of eccentric!

The Day After

54-2016-12-29-17-00-12I was up for four hours
Then tiredness set in.
The familiar exhaustion.
The partial shutdown.

I was wise to allow for recovery.
Even pleasant times tire me.
A reminder not to book events
On consecutive days.

It sometimes feels unfair
That I have to plan and recover.
Restrain myself
From living a full life.

Because I am not one who prefers
To hide in the shadows.
But my neurology
Forces me to retreat.

At least I now know I can
Spend an evening with friends.
And survive, and enjoy,
Which is progress.

I just need to remember
That I need to take
More downtime
Than most people do.