Wasting Energy

I pressed my back into the corner of the cold wall behind me, as hard as I could, hard enough to distract me from the need to twirl or flick my fingers or flap my hands, hard enough to counterbalance the brightness of the light emanating from the interior of the van parked in front of me, next to my stricken car. I’d changed out of my sunglasses into a pair of ordinary specs, because I knew that wearing sunglasses on a December evening would attract questions I didn’t want to have to answer.

My internal dialogue was on a repetitive loop: “Mask like fuck, mask like fuck, normal, normal, normal, mask like fuck, mask like fuck, normal, normal, normal…”

“How long have you lived in your current place then?” said the breakdown man.

I felt my spouse, who was standing beside me, tense. I knew the thought process that would be going through his head: “Why does he want to know? He’s going to come and destroy our lives isn’t he? How does knowing when we last moved house help with mending the car?”

I knew that dealing with this sort of inane chatter was my job in these circumstances. My spouse, who had managed, half an hour earlier, to make the telephone call to the breakdown services while I sat on the floor in the dark rocking back and forth in a total panic, would simply be unable to manage such questions, so it was down to me.

“About 4 years,” I said, using one of the learnt scripts I keep in my head for such occasions. “It’s handy for the shops,” I added, hoping this was good small talk. It seemed to be OK.

Further questions followed. I reminded myself that the man was probably just trying to pass the time, and that he probably didn’t intend this to be some sort of cross-examination under torture. I did the best I could to smile and chat, my brain feeling like it was working so hard it might actually explode, my body tense and stressed from trying to keep still, my back pressed hard against the cold wall for a bit of relief.

The computer sitting on the car engine finished its diagnostic work. The man started to show me graphs, figures, numbers, and to talk about the state of the car battery (totally knackered). I relaxed a little. This was relevant, and seeing graphs was calming and made sense. There was now a purpose to the conversation.

The breakdown man said he had a battery on the van he could fit there and then. Since it was 2 days before Christmas, late in the evening, and we were quite a few miles away from home, this was a good outcome. Battery specifications and prices were discussed, the battery was fitted, and a further few “social” remarks were made. I didn’t challenge his (incorrect) assumption that we’d been Christmas shopping, although I did remember to thank him and to convey appropriate seasonal wishes I think.

By the time I got home my speech had failed and I was utterly exhausted.

***

Since I discovered and disclosed that I’m autistic I’ve attempted consciously to conceal it, and to mask my autistic traits, on only a handful of occasions, such as the one above. That night I was low on spoons (energy), having already been out in the world for a few hours. We didn’t know what sort of breakdown repair person might show up, or whether they’d know anything about autism. We didn’t know what prejudices they might have (over the years we’ve found motoring to be a problematic area of life at times – my spouse doesn’t drive and the car is mine but because he looks like a man and I look like a woman (we’re both nonbinary) frustrating assumptions have often been made), and we didn’t have energy to educate or to explain – we just wanted to get home with a fixed car.

So the decision was made to mask, to act as “normal” as possible. Changing my glasses, removing the wristband I wear that says “Autistic” on it, remembering to smile and make some sort of attempt at eye contact if necessary, putting my tired brain into overdrive in order to interact and maintain speech, frantically searching through my mental library for scripts, remembering not to tell my entire life story or talk too much, no jumping up and down, no pacing around, no swaying back and forth or pulling at my hair, and definitely no flapping hands.

I managed it. But only just. Since going into burnout a couple of years ago (I’ll discuss burnout elsewhere), my ability to act non-autistically has been pretty poor and I’ve only been able to do so for very short periods of time without getting ill or having some sort of meltdown or shutdown. The whole carefully constructed facade that has characterised most of my life in the outside world for the last 4 decades has simply crumbled and fallen to pieces as I’ve run out of energy to maintain it. Some skills I’d previously learnt have become patchy or disappeared completely, my sensory system has gone berserk, and the amount of care I need has increased significantly.

Of course, everybody, whatever their neurology, masks to some extent. People “put on a brave face” when they have to deal with difficult situations, they dress up in uncomfortable clothes to go to formal occasions and job interviews, they walk into work on a Monday morning having had terrible weekends and sleepless nights and when asked “How are you?” respond with “Very well, thank you.” even if they feel absolutely awful and want to kick the cheery Monday morning questioner in a painful place. People with mental illnesses, chronic pain conditions, and even folk who are simply having a difficult time will experience an even greater need to put on some sort of a “public persona” at times.

So, what is so different about autistic masking? Well, I haven’t yet done enough study or research to give a definitive answer (something I’d ultimately like to do is really investigate such questions – since I discovered, nearly two years ago, that well over 90% of people on the planet experience the world differently from how I do, I’d really like to find out about their experiences, but I haven’t had the energy so far). All I can do at this point is speculate. I think, perhaps, that much of the difference is to do with a matter of extent and from the number of situations in which a person feels they need to mask in order to fit in, not to cause a fuss, or to function in the world.

Back when I was well enough to work, I “acted” at job interviews. I suspect everyone does that. But what I’d one day like to explore is the point at which most people cease to act, start to feel like they’re in some sort of “comfort zone” (a concept I’d also like to explore sometime), and when they are basically able to “let their hair down”, be themselves, and have little or no anxiety (obviously, for those who have an anxiety disorder, this will be different). From what I’ve observed of people’s behaviour (unless the whole world is performing an elaborate act and everything is fake), I suspect that many people feel free to be themselves when out having a few drinks with their friends, playing sport, at a concert, going to pick up a few bits of shopping at the supermarket, watching TV with their families, or at home with a partner. These things might be more or less enjoyable, but most folk seem to be reasonably relaxed when I’ve seen them in these situations. I am not, and, perversely, I’m probably no more likely to be stressed in a job interview than I am having a few drinks down the pub because my stress levels are so high for so much of the time that the differentials between different situations are rather small. If you’ve ever encountered me in any of these situations and I appeared relaxed, it’s because I was masking.

The situations when I can essentially be “me” occur only when there is a locked door between me and the rest of the world (and even then, there is a fear the safety might be breached). The only other person who has ever seen the full real me is my spouse, although my best friend of many decades has been close. At all other times, I am on high alert, I am stressed, I am anxious, I am acting, to a greater or lesser extent. Alcohol helps me with the act, although it’s obviously not an ideal strategy. Some autistic people, especially late diagnosed ones who have been masking to everybody for decades, cannot even be themselves with their spouses.

I find it difficult to explain this matter of extent to people – I often post things on my facebook and am greeted with a chorus of “Oh, don’t worry about that, it’s absolutely normal, everybody gets…” which I suspect is meant comfortingly, but just makes me feel very invalidated and disbelieved. Maybe my communication style is misunderstood? Maybe I’m not adequately able to explain that it’s not a question of, for example, liking or disliking supermarkets and shopping, but that the energy required to cope with the noise and the light and the people and so on is such that even a short trip out can sometimes mean I melt down at the checkout to such an extent that I have to bite my own arm and bruise it (see the picture at the top of this post, taken earlier today) in order to cope.

Of course, by the time I’m melting down at the checkout, the mask has broken. In the past I’ve been accused of being drunk, been threatened with arrest, and often simply run away from situations I couldn’t cope with. One of the reasons autistic people DO mask and hide their unconventional ways is precisely to avoid accusations of drunkenness or getting arrested or even worse. Masking can sometimes be useful and even essential. That’s something I hope to discuss in the future.

Nowadays with more knowledge and less masking I can usually manage to buy a small amount of shopping by using strategies such as wearing sunglasses and ear defenders and allowing myself to stim (more on that another time). I’m fortunate in that my circumstances generally allow me to be openly autistic and I have no problem with being so. The result is that I’m starting to learn to conserve energy where I can and to use the limited resources I do have to try to improve my quality of life, which has, over the last few decades, generally been declining rather rapidly.

I have wasted a huge amount of energy over the decades trying to live my life in order to fulfil societal expectations. Sitting still, making eye contact, sitting in a chair with my feet on the floor, wearing various sorts of clothing, speaking when it is making me feel sick, dealing with pain from lights and sounds and textures, consciously trying to work out when to talk and practising what to say, trying to maintain employment in overloading environments, smiling when it is really difficult, trying to pick out one conversation when others are happening, forcing myself to go to social events, and so on. Even the simple experiment I did when I was first investigating the “autism hypothesis” as I called it, gave an indication of just how MUCH energy masking can use.

Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.

And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.

Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.

I’m probably one of very few late diagnosed autistics who hasn’t been told “But you don’t look autistic!” or disbelieved (in fact, when I published The Discovery most people simply said “Well, of course you’re autistic – you really didn’t know?”). My mask was evidently somewhat transparent as far as visible traits were concerned and it turned out that even with the huge effort I was making I didn’t actually succeed in fooling many people and those who knew me and knew anything much about autism (which I didn’t) weren’t surprised at all. I’d also long since accepted that I was one of society’s weirdos and grown comfortable with that (in fact, I still feel very strongly that I used to be rather special and interesting but now I’ve actually discovered I’m nothing more than a common or garden autistic)!

I’m also now beginning to realise that a huge part of MY masking was not just trying to “appear normal” but was actually trying to lead a life that was way beyond my capabilities. “Taking off the mask” for me is not just about openly stimming, wearing dark glasses and ear defenders, and allowing myself to look noticeably different from other people (I’ve actually found that bit pretty easy). It’s much more significantly for me about learning to rest, learning to pace myself, working out new ambitions, new goals, ones that might, once I’ve recovered from this burnout as far as I’m ever going to, actually be possible and within my capabilities. In short, working out how to spend my remaining time on the planet living a life that isn’t going to damage my mental health still further or cause any more huge burnouts.

That’s still very much a work in progress!

How To Be

I’m aware that this blog is becoming a bit erratic. There is still the story of my diagnosis to complete. There are hanging bits of part stories about discovering I was autistic. There are still random bits of semi-poems intermingling with journal entries. And I have yet to write about significant topics in a way that I eventually hope will be properly useful to others. It’s all a bit of a mess really. And I still have comments to respond to, and so many times where I’ve stated that I need to write a whole blog post about something and haven’t yet. But I can only do what I can do. My spoons are often somewhat limited and I work pretty much to capacity at all times, so I can’t do more.

And that’s just on the actual blog. Inside my head it’s even worse. There are fragments of posts, ideas, notions, concepts and so on. I have note after note after note on my phone, half-typed half thoughts about various things. It feels like I need a year or more to go through them all and construct coherent writings from them. There is so much to do, I’m so behind with things that I need to do to keep my life just about ticking over. And there never seems to be enough time, and by time I mean the sort of time where I’m functional enough to achieve things.

Maybe, however, this erratic situation, this state of chaos, is actually reflective of my own state of mind and my own current situation, which is also erratic and chaotic. Over a period of 24 hours last week I went from hating being me and not wanting to exist, to being content and still feeling this huge relief of realising who I am. I am still struggling to speak or get out of bed some days, but can be quite capable on others. And I have also realised over the last couple of weeks, that when I am out of the flat, in public, with other people, I have a situation that is still not resolved, and not even close to being resolved.

I do not know How To Be.

The problem is this:

I have always been regarded as somewhat “eccentric”, and even, maybe, some would say, a bit weird. That’s OK, I’m cool with that, it’s not a problem to me, I’ve dealt with it long since. After over 4 decades of being a bit on the interesting side of things I’m pretty used to it. I got really upset about being bullied and so on at school until I was around 15, but by then I’d largely learnt that it was just part of life and although it wasn’t much fun, I’d learnt to act “normal enough” to survive out in the world. I’d learnt to live with it, to cope.

The problem, of course, was that in learning to act “normal enough” and in learning to cope, what I’d actually done was literally learnt to act. I’d built a mask, and a pretty effective one at that. And the mask that I built was one of a rather strong and confident person. I wasn’t the stereotypical autistic girl “flying under the radar” by sitting quietly in the corner in the class, unnoticed. I wasn’t failing exams or dropping out of school. I was strong-willed, brash, and externally confident (even internally confident to an extent, because however much of a failure I was at friendship and sport and so on, I could learn things and pass exams reasonably easily, so that was what I did). I was told that I was capable and could achieve great things (largely because of the exam results and my capacity for learning things), and so the mask that I built was one of a high-achieving confident young woman.

However, this mask came at a price, and that price was my mental health. Constantly “being strong” and “achieving” in the way that I did in my early 20s was breaking me inside, and by the time I got to my late 20s I was very very ill indeed, heading for the serious episode of burnout at around age 30, from which I never really recovered, and my life was falling apart.

Up until last year I continued with the masking process to a considerable extent while out in the world. I continued to believe that the strong me was the real me, and once I’d recovered from being mentally ill (I really believed I’d get better at some stage) I’d be back to full strength. However, that continual masking was breaking me yet again, and, perhaps inevitably, I fell apart again completely, in the summer of 2016. And by that time the world had caught up sufficiently for the events to occur that eventually led to me being diagnosed autistic.

And, because of the sort of person I am, having discovered I’m autistic I’m determined to BE autistic. I don’t consider it something to hide away, I don’t consider it something to try not to be. It’s a huge part of my identity, and after over 4 decades being “somebody else”, the relief at being a more authentic version of me is huge. I suddenly realise it’s OK to allow myself to eat the same thing day after day after day if it makes me feel better, I’m allowed to stop forcing myself to take part in group conversations until I’m so sick I’m at the point of collapse, I can stim and fiddle with things and know it’s not me being wilfully annoying but is just part of my neurology, and I’m finally learning how to be myself after decades of trying to be the person society expected me to be and failing at it.

Which is all very well when I’m at home, or with tolerant friends or someone who can care for me and explain. And is absolutely fine when I’m in safe environments and have enough spoons to take care of myself. All very lovely – in theory all I need to do now is to be my fabulous autistic neurodivergent hand-flappy rocking-back-and-forth sunglasses-wearing eye-contact-no-longer tell-it-like-it-is self! Neurology explains everything, no more need for acting! Yippeeeee!

However, I’m a grown up person. I have to live in the world. I have to go out to shops to buy food. I have to be able to deal with other human beings if I want a life beyond the television and the sofa. I want to participate in activities that will be full of neurotypical folk who think it’s great to have a spontaneous chat about nothing at all and that such a thing takes no effort, who sit and stand too close to me for comfort, who are irritated by my stimming, who will expect me to use polite social niceties that mean something to them, who don’t even know what being autistic means, and who mistake my lack of social finesse, my sometimes inability to speak, my lack of eye contact, and so on, for rudeness or disrespect or similar, which, of course, it isn’t, it’s just that my natural way of being is different from theirs.

And so I come up with a dilemma. As I’m starting to emerge from burnout and beginning to go out into the world again a bit more, I’m finding that there are times I slip back into the old mask, which is probably inevitable after 4 decades of living that way and it becoming such a practised part of my act. It’s very obvious when I do though, because I start to feel very ill and bad rather quickly and I don’t have the stamina to maintain it for very long. There are also times when I catch myself doing something really obviously autistic (like losing speech or flapping my hands or something) and realise that if something went wrong or somebody challenged me, I’d be in deep trouble without being able to explain properly what was going on and with no carer on hand to help. And how DO you deal with a stranger who is standing so close to you that their “person vibes” are making you feel ill, when they don’t even understand the concept of “person vibes” (which, incidentally, is a term I just invented now)? They think you’re being awkward, but you’re not, it’s just that you can’t cope with that much person that close in that time and place.

I have no answers at this stage. But I’m coming up against the same problem that I read about from the parents of autistic children, but for myself, not a child. I’ve seen discussions about the extent to which autistic children should be pushed and made resilient and able to cope in life, and the extent to which they should be encouraged to be their fully autistic selves with all that that entails. I’m now considering to what extent I need to continue to use the mask I’ve developed in order to survive in the world and to what extent I can allow all my autistic traits and tendencies to dominate. On the one hand, trying to make autistic people “look” neurotypical can be massively damaging to mental health (don’t I know this from bitter experience), and how well we “fit in” or “look normal” is no measure of success in an autistic life because it denies who we are and can cause huge burnouts, but on the other hand we have to survive in the world somehow and that needs a certain amount of resilience and coping ability, especially given how little support there is in most societies for autistic people, particularly those of us who are adults. Add on to that the complications of late diagnosis and the concomitant identity crisis that arises from this huge change in life, and it’s easy to see how difficult it is to know how to proceed from here.

And this is not just about societal attitudes, but about practical survival and physical health. I’m not at the stage where if the supermarket discontinues my usual food that I don’t eat at all, but I did sit and cry for half an hour the other morning and declared that I wouldn’t eat or drink that day because we’d run out of the milkshake that I usually have when I first get up. My autistic brain said NO in big shouty letters, and I had to use my rational “learning” brain to argue with it. I had to allow myself to recover from what was basically a mini-meltdown over a milkshake, and then gently persuade myself that I was going to eat and drink and it would be OK to drink something different until my husband could get to the right shop to get the right sort of milkshake. This all takes energy (and, in my case, a very understanding husband), and it’s nobody’s fault – it’s just the way my brain works being at odds with what I know to be good for my body and overall health!

And going out into the world and coping with everything that the external world throws at me takes even more energy, even when people are trying their utmost to understand and be helpful. I’m quite good at it because I’ve been practising for a long time and I’ve learnt a lot of social skills which I can maintain quite well for the duration of most social events as long as I get enough downtime in between, but I’m also determined to be as autistic as I need to be where possible, because it’s so much easier, more relaxing, and SO much better for my mental health.

Also, while knowing I’m autistic is an amazing liberating relief, and while I really like being autistic me because it’s so natural and right and comfortable, I also rather liked the strong capable mask person (which is possibly understandable – since I created a persona it probably made sense to create one of someone I liked rather than someone I hated). I don’t want to lose some of those strong bits (being “tough” is something I enjoy in many contexts), and I still need some of that resilience to survive and to live any sort of sensible life.

However, I know that, aside from the briefest of interactions, I have to be open about being autistic. I read of people who hold down jobs and don’t tell their employers that they’re autistic – that wouldn’t be possible for me as I’m too obviously different, and at my best I can maintain that level of mask for only about 3 days absolute maximum, even when I’m going home in the evenings. In the past the jobs have just failed, and I’ve lost them. Without significant and noticeable adaptions there are things I simply can’t do. At the moment I’m not even close to being able to work, but if that ever changes then there’s no way I could hide such a big part of me. I can currently act neurotypical for an hour or so at most these days, certainly not long enough to hold down a job!

So I’m now stuck in a bit of an inbetween state, trying to work out where to go from here, trying to work out how I can take this new discovery, be myself, be openly autistic, enjoy the benefits that brings to me, even manage to advocate for other autistic people and educate others about autism, but still manage to live a life that doesn’t mean I’m sidelined for things, or unable to participate in many of the sort of events that make life interesting and worth living.

This post has turned out to be more a list of questions, of musings, of ponderings, than anything else. Maybe, a year on from discovery, six months on from diagnosis, and slowly emerging from burnout, this is a phase I have to go through. I have to ask the questions before the answers will start to emerge. I have to consider how I’m going to live my life, what I’m going to push myself to do, how much I can ask for adaptions to do things I’d be unable to do without them, how much I’m going to give up on some things because it’s too much, and where the balance will eventually lie. Maybe there will never be a full balance, but some sort of compromise between the bit of me that craves adventure and activity and the bit of me that needs solitude and peace.

And after two thousand words of analysis and consideration…

I still don’t know How To Be!

I am still having, consciously, to make decisions about whether to present the old mask to people, which is practised and known and I can do only for short lengths of time, or whether simply to “be myself”, which is new and unfamiliar to me and others and requires explanation and education but is so much more relaxing and feels so much more honest and authentic.

I suspect I’m still learning, trying things out, sometimes getting it wrong, sometimes getting it right, discovering what works and what doesn’t. I suspect that learning How To Be as an authentically autistic person who can actually manage to do things out in the world without getting constantly broken will be an iterative process, and I’m still very much at the start of that process.

Hypothesis Formation

Yesterday, the following status appeared in my facebook memories from one year ago:

Did all that just happen? Now to try and remember what I was doing 3 weeks ago. And to consider what to do with the new information concerning how my head reacts to stuff.

At that point I didn’t mention on my facebook wall that it had been suggested by several people that I might be autistic. I just vaguely alluded to “new information” about “my head”. As far as I was concerned, the notion of me being autistic seemed extremely strange, extremely unnerving, and, as far as I knew at that point, extremely “not me”!!!

Oh, how I laugh at that last bit now!!!!!

I certainly wasn’t going to start chattering on about it on facebook at that time, and, as far as I can remember, I was still really regarding the whole “me being autistic” thing as one of those slightly wild ideas that folk have and that would eventually fall by the wayside as being just another one of those theories. I didn’t want to post something up on my wall, be shouted down by a whole bunch of people, and then unfriended by a whole bunch more. I wasn’t confident enough of anything at that time to mention the idea to more than my husband and one or two friends.

However, the fact that several people had, independently, suggested that I might be autistic was enough to make me take the idea seriously enough to do some research and see if I might find out what was at the root of their suggestions.

I did what anyone brought up with a toe in the world of science would do. I formed a hypothesis, which I called the “autism hypothesis” (i.e. proving the hypothesis would mean that I had gathered enough evidence to confirm that I was autistic, and disproving would mean that there was insufficient evidence and I wasn’t autistic and I could ditch the whole idea and just go and have a drink and forget about it).

So then I had to investigate the hypothesis. Gather evidence. Find out what this whole “autism thing” was actually about!

A friend of mine had sent a copy of Liane Holliday Willey’s Pretending to be Normal to me and I’d read it with a certain amount of bemusement – apparently it was something to do with autism, but it just seemed like a fairly ordinary account of someone’s life as far as I could tell. It was enough to convince me to investigate further, but I needed more INFORMATION! Actual information, not a life story.

And so I did the modern day equivalent of what my father told me to do when I was young. Back in my childhood if anybody wanted to know anything the answer was always to “get a book from the library” and to find out that way.

I have not been into a lending library for many many years (I think the last time I went into one was for a job interview and I was unsuccessful). And I don’t believe a lending library would have been much help to me.

So I tried Google, which was also no help because it presented me with page after page of search results about small children and parenting and so on. The world of adult autistic blogs was still inaccessible to me as I didn’t know what I was looking for, or that it existed, or how to find it. And it certainly wouldn’t have occurred to me at that stage that there were groups for autistic people on facebook or hashtags on twitter or anything of that sort.

So I went back to what I knew, which was books, and typed “adult autistic” into the Amazon search bar. And discovered a book with a promising title: Cynthia Kim’s I Think I Might Be Autistic (or as it subsequently became known in our household “The book with the pencils in the wrong order”).

And on the 23rd August 2016 I downloaded the sample from the start of the book onto the Kindle app on my iPad and had a look at it.

It pleased me from the start. It provided what I wanted – information, an outline of the diagnostic criteria for autism, and the start of a list of questions that was evidently continued beyond the free sample that I had. This book was speaking my language – it had facts and lists and promised to provide me with exactly what I’d been looking for to start to work on proving or disproving the newly-formed hypothesis.

My Amazon records show that I ordered the paperback copy the same day. And that was the day on which Time Stood Still for me. The 2016 calendar STILL shows 23rd August as the date, and maybe it always will. In Time Stood Still I referred to some sort of mental breakdown, which I now know to be a huge episode of autistic burnout.kn

It was to be months before I started to emerge from that burnout (and I still haven’t, fully) and from that moment almost my entire life was taken up with investigating the newly-formed hypothesis and, later, with trying to obtain a formal diagnosis.

I read the criteria from the sample of the book on my iPad over and over again, and waited for the paperback to arrive in our mailbox so I could try to work out what the diagnostic criteria actually meant, and whether any of them had any relevance to me.

With all that’s happened in the last 12 months, and with the knowledge I now have, it seems utterly extraordinary that it was only a year ago that I started seriously to investigate the possibility that I might be autistic.

And I certainly wasn’t telling anyone who didn’t need to know about it at that stage!

If anyone had told me I’d be blogging about it publicly within 4 months I’d have thought they’d gone mad!

Trail Return

So last weekend I went back to the place where I fell apart while playing music last August.

And this weekend I went back to the place where I fell apart while running in my last race before burnout hit so badly that I was forced to take a complete break from running, to the place mentioned in The Background, where I eventually pulled out of the race, believing that I had some sort of mystery illness because I felt so dreadful.

This afternoon we drove to what is, during that race, aid station 4 (and which is a car park most of the time). I parked the car in pretty much the same place as I sat with a race official almost a year ago, trying to explain that I was really not well, but I didn’t know how I was not well. I didn’t understand, then, why everything was so painfully loud and bright and hot, or why I felt constantly as if I was about to be sick or that I really felt that I needed to burst into tears but couldn’t.

I didn’t understand then why, at the previous aid station, I’d felt like the trees were coming towards me, I’d been unable to form the words to ask for a cup of tea, and the voices of people around me were distorted and incomprehensible.

Neither did I understand why the world around me seemed to be breaking into a million little fragments, and I couldn’t make sense of any of them, still less run an ultramarathon.

Back then I put it down to a combination of “mental health problems” and “maybe a virus”. It would be a few weeks more before someone suggested I might be autistic, and another month before I started to take the idea seriously.

I’ve gradually started to return to running over the last few weeks. I went out and did a couple of kilometres, then 5K, then 8K, and I also did 12K of strenuous walking earlier this week. All of this, however, has been on the road, mostly not far from home where the running was concerned.

But today was different. For the first time in a year I took kit with me and changed into it elsewhere (which requires a lot of executive functioning energy). I drove and parked out on the trail. And I did 8K of trail running, on gently undulating decent path, admittedly (it absolutely wasn’t fell running).

Once again I drank warm disgusting water out of the bladder in my backpack, once again I pushed myself hard physically (I’m actually pleasantly surprised at how much residual fitness I’ve retained, though I have some way to go before I am where I want to be). It was also a hot day, which added somewhat to the challenge.

And I chose to go back to the very same place where I’d fallen apart in the race nearly a year ago. To deal with the psychological stuff too, to run the same path that I’d previously staggered, before collapsing, ill and broken, by the side of the trail, from where I had to be rescued by race officials and a car to take me to safety.

Today was an interesting experience. The physical bit was actually quite easy, and I didn’t feel any great psychological impact, though the memories of sitting in a folding chair, sipping flat coke, and desperately trying to find words to convey to the race officials what was wrong with me (I didn’t know, of course) were very strong.

But, what I did experience, very strongly, was exactly the same sensory overload that I had done the year before. As I got back to the car and met up with my husband (who’d been running in the opposite direction – we rarely run together), the sick, dizzy, bad feelings overtook me and I knew I was totally wrecked. I sat in the car and suddenly felt the familiar ill feelings engulf me. My running kit was suddenly unbearably constricting and I simply took it off (my husband attempting to shield me from a man in an adjacent parked car – though by that stage getting the clothes off was all that mattered to me). I put my ordinary t-shirt on, then bashed my head against the door frame of the car several times, which helped, and my husband suggested that maybe we should walk around a bit to dissipate some of the evident tension.

So I ended up walking circuits of the car park, flapping my hands wildly, while my language fragmented and sentence structure fell apart, and I ended up monosyllabic.

My husband, who is quite accustomed to me being a little out of the ordinary simply remarked “You really are mad as a box of frogs aren’t you?” I concurred, and pondered the madness of frogs in boxes, as I usually do!

By the time I felt well enough to get back into the car to drive home my speech had completely gone, and as I type this, 3 hours later, it is just returning, in effortful monosyllables (and I’m still really stimmy and unable to sit still). However, with the loss of speech, the ill feelings started to subside, and I was able to drive us home perfectly well.

And I’m pleased, because I did something today that would have been unthinkable even a few weeks ago. I’m still very burnt out, still a long way from well, and I now know that one of my major challenges when running out in a world with so much light and noise and so on is to deal with the effect that the sensory overload has on my system. It’ll be even more challenging during races when I’m going to encounter other people in large numbers, and going to have to find a way of explaining how much energy it takes to speak to them or to process their words if they speak to me. There’s a whole lot of learning and so on still to be done.

But today I got back out onto the trail. I managed to do something I haven’t done for nearly a year, and I observed how far I can push myself before my system breaks.

And it’s so much easier to deal with now I know WHY it happens. There’s a long way to go until I figure out how to deal with it all, but at least knowing what I’m dealing with is a good starting point!

It was good to be back. Doing what I love, starting the journey back to long distances, when I hope to be out there on the trails, running through the night again, and experiencing the magic that is ultrarunning!

Going Back

I returned
To the place
Where life
Fell apart
Last year.

To the scene
Of so many
Meltdowns
And tears
And disasters.

To the memories
Of fear
And difficulty
And wondering
Why
I couldn’t
Just get on with life
Like most others
Could.

A whole day
To pack.
The journey there
Dissociated.

Focusing on
The practical.
Doing the most
Essential bits.
Taking as much
Time out
Alone
As possible.

Starting to learn
To accept
Help
Even though
It is counter
To everything
I have ever
Worked for.
Having to change
My mindset.

Struggling sometimes
Someone talking
To me
When I wasn’t able
To process speech.
Conflicting instructions.
Near meltdown
But not quite.
Speech gone
For just over
Five hours.

Consciously being
With other people
When I couldn’t speak.
Instead of texting in
“Sick”
And staying away
As I would have done
Previously.

Senses on overload
Lights too bright
Music distorted
I knew it sounded
Wrong
As if being played
Through a
Faulty
Amplifier.
Not what Mahler
Intended!

Knowing
Some things
Would help
But lacking
The ability
To do them.
Inertia.
Energy.

Living away from home
Minus usual care
And routines.
A few meals
Missed,
Some medication
Missed.
Executive functioning
Declining
Sensory spoons
Depleted
Social spoons
Deficit.

Feeling guilty
Because
I wasn’t able
To contribute fully
To everything.

But

People helped.
No rehearsals missed.
Near constant
Low level stimming
Was fine.

And mostly
The music
Was wonderful,
Not distorted,
And I can
Still
Play
The viola.

Learnt so much.
Started to understand
Just WHY
So much of
This stuff
Has always been
So hard.
Now I understand.

Beginning to adapt
To the new life
With the new knowledge.
Starting to accept
That I need
To do things
A bit
Differently.
Consciously
Saving energy
Where possible
Now I know
What uses it.

There is more needed.
It isn’t all solved
Yet.
I still find
Asking
For adaptions
Really hard.
Partly because
It is so new
And partly
Because
I don’t yet know
What is possible
Or what I need.

But I am starting
To realise
Why some things
Feel bad.
And always have.
And even though
They still do
Understanding WHY
Helps.
And I can start
To notice
How things
Drain my energy.
And why being
Near to other people
Is tiring
And why “washing”
With vile slimy wipes
Makes me feel
Even worse
Than I already did
Without my bath.
Sensory hell.

It is still
Very much
A work in progress
This new life.

And I need
So much
Recovery time.

But it is possible
To enjoy
Something
I had thought
Might
Be beyond me
And so
Lost for ever.

There are
So many
Good things
I don’t want
To lose.

Maybe
I can keep
This one.

I went back.

I survived.

Six Months Public

I don’t have time to write a long blog post right now as today I’m going out into the world to play music, to continue the process of discovering just how much I can push myself to do things and what adaptions I might need in order to be able to live the best life I can, and to keep rebuilding my life, which fell apart so spectacularly in the latter part of 2016.

However, I wanted to post something, to mark the six month anniversary of publishing The Discovery, which was the post in which I disclosed my autistic identity to anyone who cared to read the post. Only two posts preceded it, an introduction, and a bit of background, and I could never have imagined, six months later, just how much I would have learnt and written and connected with other bloggers and people in the autistic community. On that day, back in December, I was, to put it mildly, extremely nervous about what might ensue, and I still, at that stage, had no idea that the responses from most people I know would mainly be of the form “Well, of course you’re autistic, you mean you didn’t know” or “Well that makes total sense”!!!

I wrote about Disclosing Identities back in January, and I stand by what I wrote then. For me, full disclosure has been relatively smooth, although I am still getting back out into the world (like today) and I am still working on getting a smooth and brief script together to talk about being autistic in ways that are most likely to be understood and appropriate when discussing with people out in the world. I’m also still very much at the start of the process of working out what adaptions I might need in order to successfully participate in various activities and not end up having a meltdown or ending up too ill to function.

But, six months on from what was the real start of this blog (and might, at the time, also have been the end of it), things are OK. I am yet to be told that I “can’t be autistic” (or any similar phrase) and I’m still wondering whether that’s because I do, in some ways, fulfil autistic stereotypes (I do rock back and forth quite a lot, I am fairly random with eye contact, I do sometimes have full-blown meltdowns in supermarkets, and, yes, I do like mathematics and find it calming), or whether I’ve just been monstrously lucky to be surrounded by such supportive people!

Whichever way, six months from the nervous day on which I posted that first post, life now feels very very different. Still very much a work in progress, but a long way from how it was back in December.

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.