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.

Somewhat Meta

This afternoon I sat at the computer and tried to work on a couple of blog posts. I have a huge list of things I want to write about, things that are swirling round my head, things that need translating into coherent words so that you, gentle reader, will understand them.

I also have a more immediate list, a list of posts that are on my “next to write when I have the spoons” list, and fragments of which appear randomly in my mind as I lie awake at night, or try to work out how to make tea, and so on.

But the days on which I can work on these posts are limited. Some days I can sit and type three good, long, coherent, informative posts without pausing to draw breath (or, indeed, more accurately, stretch my fingers). However, some days I can hardly make the words happen at all. Sometimes on those days I can make “poetry” (or whatever the things I call poems are) on the iPad, sometimes I can lie in bed and type analogies about art galleries into my phone, and sometimes I can tidy up previously written posts and remove some of the more glaring errors from them (I recently found some muddled wording suggesting that I’d just discovered I was in my 40s, which really wasn’t what I meant to say)! Some days I can do nothing at all, and I am frustrated beyond belief by my inabilities.

Today I sat and tried to summon the words to write a post I very much want to write, and they weren’t there. So I sat and thought about why they weren’t there. And I noticed a pattern.

Last week I spent almost all week at home alone. I’d had a busy few weeks and been out over the weekend, so I was socially and sensorily spent. Monday and Tuesday were lost to recovery, but by Wednesday I started to feel a bit better, and by the end of the week the words were flowing quite nicely and I was much improved and starting to feel quite good. My head was clearer, I was getting a bit more done in the flat, and I was able to write more than I had been. I was even eating a little better.

But I had not left the flat all week. I had spent around 14 of my waking hours each day in near darkness, as quiet as possible, and in total solitude.

Then, at the weekend I went to visit my best friend. He said I was in better shape than he’d seen me for a while. We talked a lot about a book project we’re both involved in, we had some tea and a snack with his wife, and I also popped into our mailbox in town to pick up the post and to sort out some admin there. I then spent Sunday with my husband at home.

This week, however, has been very different. I went out for a walk on Monday, then took Tuesday to recover from it. I then went out again on Wednesday to do various jobs in town that were becoming rather urgent, including collecting my prescription from the doctor’s and trying to book an appointment to see my GP. Those who are reading this and know me on facebook will remember a status full of sadfaces as I’d had a massive panic (close to meltdown) at the reception desk in the surgery and had fled back to the safety of the car. I’d gone in, with prepared scripts, knowing that I had to collect my meds, then ask what appointments were available and put one into the calendar. However, there were no appointments available. I cannot make an appointment to see my GP because all appointments for May are fully booked and June hasn’t been loaded onto the computer yet. The receptionist suggested I telephone later. This made matters worse, not better. I fled.

And now I have noticed a pattern. Whereas yesterday, Thursday, I was still, to an extent, very hyper from having been out the day before, still very overstimulated and very hypervigilant (virtually the whole day was spent in motion of some sort, stimming like crazy in an attempt to rebalance my senses), today I feel more drained, lower, and I’m definitely struggling to produce any words that aren’t just a direct stream of consciousness translation. I have a list of jobs to do, but, to be honest, you might as well suggest I climb Everest as expect me actually to do those jobs.

So, as I sat down to write the blog post I wanted to write today, and couldn’t, I went to the facebook tab and was about to annoy my facebook friends a little further with this startling revelation that when I go out into the world I need one day (like yesterday) to wind down from the experience and another day (today) to recover properly. Then I decided against that option as I’ve already posted quite enough there for now (I also nearly put up some links to this blog on a couple of groups, but deleted them before posting because I didn’t want to annoy folks who weren’t interested – publicity work is not my forte) and decided to type whatever was in my head into a word document instead.

I’ve also, interestingly, just tried to speak. It’s really really difficult. The words aren’t there except in one-at-a-time syllables. I expect they’ll go completely at some point, and then I’ll start to feel better, less stressed, and my head will start to clear. This is how it seems to work. It’s like those bits of my brain need rebooting from time to time, especially if I use them a lot or get stressed. I have varying levels of shutdown, and I’m beginning to be more aware of these (prior to discovering I was autistic I just thought I was feeling ill and in a bad mood) and learning to live with them. Right now I don’t feel that I’ll ever be capable of anything much ever again, but my brain knows that isn’t the case. And it doesn’t actually matter if I lose all my words today – I’m not planning on going anywhere and don’t need to talk to anyone, but it’s interesting to observe how this works.

Yet the typing is still fine. The thoughts are muddled and not sufficient for any sort of proper work, yet there is a translation channel for my immediate thoughts to go to my fingers that remains open (a bit like closing all the doors to a house but the cat flap is still available for the cat to go in and out as it pleases). So I figured that instead of starting yet another thread on facebook, I could actually turn the fact that I was struggling to write a blog post into a blog post!

I guess it’s not the most interesting blog post in the history of blog posts, and it’s definitely a bit meta, but it is what it is and maybe it gives an insight into how being a fairly newly diagnosed autistic still in burnout impacts on my life and ability to do things!

And now I have to actually do the posting bit, which seems like a huge ask right now, but I’ll be pleased that I’ve achieved something if I manage it!

Vague Head

Yesterday I posted the following status on my facebook:

Somewhat “vague” today. Not bad, just somewhat purposeless and lacking in any sort of knowing what to do. I’m sure there’s something must need doing, but I haven’t quite figured out what it is. And my head’s doing that “wandery” thing where it can’t quite figure anything out!

And later, replied to a comment on that post with the words:

I’m in one of those moods where I want to write stuff. But the head is blank. There’s nothing there. The little translation people in my head who sort the words have taken a day off.

As it turned out, I wasn’t wrong that the little translation people had taken a day off. By the time I got into bed my spoken words were becoming somewhat nonsensical, and by the time my husband had fallen asleep, they’d gone completely. I didn’t manage to get any sleep myself until nearly 4 am, so it was a rather tedious night. Even by this morning I still wasn’t able to ask him what time he’d be home from work because I couldn’t summon the energy to form a sentence that long and complicated.

And I’ve spent most of this morning in a state of some sort of shutdown. And that sort of “sad” feeling pervades. And everything seems to be a bit triggering and there are so many things on facebook that make me angry but I don’t quite have the capability to debate them because I’m right at the start of this process and I haven’t yet got to the stage where I can analyse and present the arguments in a way I want, so I read that according to the labels I’m supposed to be “high functioning”, because I could speak as a child, and I feel so desperate because I can’t remember how to work my socks and it’s nearly 2 pm and I’ve not yet been capable of eating or drinking anything, but that’s OK, because I’m “high functioning” so my life must be brilliant, like those autistic people in silicon valley who can do computer things without crying and so on. And everything’s all jumbled up in my head and I can’t really quite get the spoons together to make sense of it all, so I just sit at home in my horrible dark messy flat, staring at the forms for the state benefits I don’t want to claim because they scare me so much but I know I have to because I cannot hold down a job and my husband’s working flat out and we’re still not breaking even. But it’s OK, because I’m “high functioning”, and my sort of autism would be described by most people as “mild”. And there are parents on groups talking about their autistic children as some sort of tragedy and saying that because their children are “severe” they will never be able to live independently and that the adult “mild” autistics don’t understand. Even those of us who cannot live independently – independent living is a distant dream for me, a world that I might never attain! And they even have children at all, which, to someone like me who was never able to have any, seems terribly ungrateful. And I see the success stories and the smiling graduation pictures and I remember how hard I worked (not at the subject, but at being able to live) to get through my degree, and the early morning drinking to enable me to cope with the world, and the picture that everyone else saw of a smiling person in mortarboard and gown and how much damage I was doing behind the scenes by pretending to be strong that by the time I was in my late 20s I was downing bottles of whisky and packets of pills in the hope that I wouldn’t ever wake up again.

And all this goes round and round in my head like some sort of mess, from which I hope, one day, to extract some sense, some coherent argument, some way of trying to explain all this to people that they will understand, that they will think about. And how important it is not to pressurize autistic people into appearing “normal” from the outside because it is doing us so much damage on the inside. And I sort of hope that people will realise why all this stuff is so triggering and difficult for so many of us, but I realise that many of them probably won’t, and just like I’ve had to learn in other areas of my life, there are times when I really should hide the offending posts on facebook and move on, because my own quality of life is often so poor that I need not to make it poorer by staying awake all night, nonverbal, triggered by all this stuff, and wishing that I’d never been born because my life is such a bloody awful mess. And even as I type that sentence I’m worried that I’m lining up “nonverbal” next to “triggered” and so on, and I want to go back and change it (but I don’t have the spoons) because it implies that nonverbal (which really should be called nonspeech anyway because typing is verbal, just not spoken) is bad, and it isn’t, at least not from the inside – it feels calmer and less stressful than trying to maintain conversation, which is often hard deliberate work. I usually find that I start to feel worse and worse when I’m trying to hang on to speech, but feel much better once it has gone, an inner peace that isn’t available when trying to communicate by talking. Yet so much of the outside world seems to see this silence as a bad thing. And I am confused. And now, reading that paragraph back, I realise how social media, which is largely responsible for triggering many of these thoughts, is simultaneously wonderful and difficult, because without it I would spend most of my life without any human interaction at all, but with it I am exposed to things that are often difficult to cope with. And there’s another whole blog post to be written about that too.

And as I type this I wonder whether even to post it. Because I want to make proper, reasoned posts about all these things at some point, and I want to explore as many angles of the debate as possible. Despite my never having succeeded in academia, I am an academic at heart, a scientist, a person who tries to be as rational and logical as possible and to try to understand the opposing point of view in arguments, even if I subsequently dismiss that point of view.

But I am also just a person. A very broken person, with a lot of baggage still to unpack, a lot of self-esteem issues to deal with, a lot of practical problems to tackle, and a very very struggling head that doesn’t even think in words and needs to expend vast amounts of energy to translate the concepts and pictures and feelings into words in order to communicate them to other human beings. Even then, I don’t always get it right – it’s clear from replies to things that I say on facebook that others don’t always understand what I mean and maybe I’m not clear enough.

Note: I ran this post by my husband, who suggested that I add the words “I do understand that people who say ‘you aren’t broken’ are trying to be helpful but it is often the opposite of helpful so please, if you would like to know how to help, you can start by not telling me ‘you’re still you’ or ‘you’re not broken.’ Thank you.” (There’s a whole blog post to write about that at some point too – the extent to which I’m “me” or “broken” is massively complicated in my head and I need to work it out for myself, which will take some time).

I will do the proper blog posts at some point. The ones on my list, in which I discuss functioning labels, in which I discuss speech, in which I discuss how damaging internally it can be to an autistic person to try to behave socially in the same way as most other people can, and about how some of us who have been doing it unknowingly for decades have struggled to work out why life has consistently been so tough and gone so very wrong and have ended up so very broken and burnt out as a consequence of putting in so much effort for such a long time.

But I need more time for those. I need the soupy mess in my head to settle, so I can see. I need to do it when the translation mechanism is running smoothly and my head is clear and I’m not dealing with so many other things at once.

If I do decide to post this, then it will feel like one of the “braver” (to use a word that others have used to describe this blog) posts, because I am raising issues that are difficult, and I’m doing so without even having the capability to debate them, or with the backup of sufficient knowledge in my head, which feels like a rather frightening, and maybe risky, thing to do. But one of the things I was determined to do at the outset of this whole blogging enterprise was to try to be honest (or, at least as honest as I can be – there are things I have to leave unsaid sometimes to protect other people because my story is my own, to use as I please, but where it intersects with the lives of specific others I sometimes have to tread more carefully).

Maybe, however, it will be worth it if it encourages others to think about these issues. Although I know I’m already triggering myself massively just by typing this stuff up, never mind what will happen if I post it.

Perhaps the very best course of action at this point would be to go and see whether the connections in my head are working sufficiently well to make a cup of tea. And if they’re not, to get someone on social media to talk me through the process so at least I’ve had a hot drink today, even if nothing else!

Accepting Wrong

51-2017-01-05-23-23-12Sometimes I feel wrong.
And I don’t know how.
Just wrong.

It is not always easy to tell
What I need to do
To feel better.

I try moving and stimming,
Lights and soft fabrics,
But still wrong.

I look at my weighted blanket
And my compression clothes.
My skin recoils.

Maybe I’m hungry and need food?
So I go to the fridge,
And feel ill.

I probably need a meltdown.
I’m probably anxious.
Maybe.

Upcoming social events,
Assignments and commitments,
Already pressing.

Ongoing situation with assessment.
Still constantly flashing in my head.
Tough times.

Pushing myself in recent days.
All takes its toll.
Uses energy.

I listen to my body and ask what to do.
It just says it feels wrong.
No more detail.

There are feelings of something
But impossible to know
What they are.

Sometimes I feel wrong.
And there is nothing to do.
But live with it.

And wait…

***

About half an hour after I wrote those words I heard a bit of a kerfuffle going on in one of the rat cages. I went to see what was going on and opened my mouth to say “Hey dudes, what’s doing?” or similar, as I would usually do.

The words were gone. Completely. No possibility of producing comprehensible speech.

Fortunately rats don’t care about words. They respond to any sounds.

But I discovered what the wrong feeling was.

Impending loss of words.

Can I Sing?

35-2016-12-29-22-15-02The question above isn’t one regarding my musical ability. I wouldn’t call myself a singer in any real sense, but I can be a moderately useful choral soprano from time to time, got grade 8 in singing when I was in my late teens, and have occasionally sung solos, although that’s all very very rusty these days!

However, I have asked myself that question on a couple of occasions recently, most specifically when I’ve “lost the words” (I’ll do a whole blog post about that at some point, but regular readers will by now have picked up that I have times when I am non-verbal and unable to speak).

The first time I wondered about singing was when I had around 3 hours of lost words while my husband and I were staying in the hotel (see Balancing Act), but by the time I had thought to consider the question my husband was asleep and I decided that wasn’t the moment for the experiment. Picture the scenario – you’ve just fallen asleep after a busy day fetching food and coffee, and you’re suddenly awoken by some sort of noise, and then you have to put your glasses on to read the words your wife is typing to you on her phone to discover that your valuable snooze time has been interrupted to conduct some sort of bizarre singing experiment! I’m barmy, but not quite that barmy!

Anyway, last night I lost the words again. Not really surprising after the week of the cancelled second assessment and all its attendant strife (there was yet another round of telephone calls and crossed wires yesterday afternoon). I gradually observed the feeling, familiar since childhood, of first a sort of sick exhaustion, then being (as I’ve always assumed) simply too tired to talk. I’ve spent my life assuming that everyone gets too tired to talk, and that’s just normal.

Since my husband was out late last night working (there’s a reason I don’t wake him when he’s asleep), I was in the flat on my own, so had the opportunity to try the singing experiment. It wasn’t a sophisticated experiment – there was an old episode of Top of The Pops burbling on the telly, and I thought I’d see what happened if I tried, from my non-verbal state, to sing along.

The answer was this – if I tried to sing with the words of the song, then nothing. Couldn’t do it at all. Like there was no connection, something unplugged (I really do want to try to work out how I can describe all this properly sometime, but for now it’s the best I can do). So I tried without the proper words – just “la la la la la” type of thing. Also nothing. Not a hope.

But if I just forgot about the words and hummed the tune alone. Absolutely fine. Like normal. No problem at all. Just like normal humming. Totally wordless, but all completely intact from a pitch and music point of view.

It really is the actual WORDS that are the issue. I have some sort of circuitry issue with making words. Which is, of course, why social events and conversation are so absolutely exhausting. Even when I’m apparently speaking fluently, I’m working overtime to make that speech, and sometimes I just can’t do it at all.

It’s all very interesting!

Responding and Communicating

04-2016-12-11-09-12-11As I mentioned in the first post of this blog, my ability to engage fully in discussion might be rather limited at the moment. It is true that I can sometimes write reasonably comprehensible prose, and sometimes the translation mechanism in my head, which converts the thoughts to words and words to thoughts, runs smoothly and efficiently. But sometimes it does not.

After I posted yesterday I received quite a few messages and comments on Facebook, some of which I wanted to answer fully and compassionately, some of which I wanted to scream “Yes yes yes” to, some of which were beautiful and eloquent and touching, some of which I wanted to challenge quite heavily, and some of which I found really really amusing – one in particular, for a very particular reason, which will be discussed on this blog in due course.

Some of these communications are lengthy and need more attention than I’m currently able to give. I just can’t read them and deal with them right now, so please go gently on me. It might take weeks to get to long stuff, so brevity is appreciated. My head is processing things really really slowly at the moment. I’m using most of my available energy to try to eat regularly, to keep clean and healthy, to try to salvage my maths degree (which is once again hanging in the balance – the Open University have known about my autism since October and are thus far being fabulous, but time is not on my side), to try to preserve a book project, and just to prevent the rest of life falling apart. In the last few months I have had to reduce my schedule drastically, pulling out of several marathons, declining playing things I really wanted to do, and spending time just getting to the stage where being a public autistic was something I could cope with at all.

Furthermore, I’m still deeply mired in the process of trying to get an official formal diagnosis and have filled in so many forms and gathered so much evidence that it has almost been a full-time job. One reason why the assessment at the end of November was so traumatic – it should have been the biggest day of my life, instead of which it was an unmitigated disaster. I’m still not able to write it up, although the bruises I inflicted upon myself while in meltdown in an unsafe place with no soft furnishings are starting to heal.

I’m still somewhat amazed at the number of people who thought I knew and weren’t surprised. I really didn’t have a clue – had I known I was autistic I’d have been talking about it years ago, because it is my way to talk about things whenever I can. Evidently my mask really was full of holes, and despite my spending 40 years believing that I was just a bit eccentric and the world was a really really tough harsh place, anyone who knew what they were looking for could see what was underneath. Sometime maybe I’ll try to discover where the holes were. What did people see that I didn’t? What made them suspect?

I also have quite a lot of e-mails in my inbox that really need answering, but I’m only capable of doing so sporadically, and I need to set up a calendar for 2017 and seriously work out what I can commit to and what I must decline. At the moment I’m struggling even to go out for a coffee, although I am, to some extent, trying to get out and about when I can because the alternative is becoming a complete hermit, and I know that however tough it is, when I can manage it, there is a world of things I enjoy – I just need to work out how to cope with them.

The effect that posting publicly yesterday had was not unexpected – I lost verbal functionality. I have had “silent” spells throughout most of my life, from somewhere around 5 years old. I have long known that when I am very cross, or very distressed, or very tired, I simply go silent. It has never occurred to me to wonder why because it has always been the case, so I assumed it was normal.

Since I’ve discovered I’m autistic, I’ve been paying a bit more attention to these silent phases and realised I am silent not through wilfulness or because I’m trying not to talk, but that I am actually unable to speak at all during those times. I have experimented with trying over the last few months and I really can’t make the words in my head come out of my mouth. They just won’t. There are sounds, but no words. Like someone pulled the plug out on the word channel. As I start to recover functionality I am first able to type, but not to talk, and I type on my phone if I need to let my husband know that the words are gone. When the words return they are at first monosyllabic and stilted.

I tried to reply to a couple of messages early in the day yesterday. The results, produced with immense effort, were also almost monosyllabic. There was this outpouring on my wall to which I couldn’t respond. Things improved as the day wore on, but by that stage I was utterly utterly exhausted.

However, one of the other slightly odd effects that “the autism discovery” has had (there have been several) is that I’ve suddenly started producing slightly different words, which I can do when proper sentences aren’t possible. I don’t know whether it’s poetry, since I don’t know much about poetry. But it is what it is.

Yesterday morning, when my spoken words were monosyllabic, my ability to communicate in writing impaired, this was what I did manage to pull from my head:

And so they know.
I cannot immediately discuss.
The words – difficult.

I lose words.
Sometimes.

Words are effortful.
Sometimes.

Other times they flow without stopping
And I do not know how to make them finish…

Alone, the thoughts are there.
And I can translate
But struggle to interact.

Thoughts on branches.
Concepts.

Thoughts in pictures.
Visual.

Sometimes they come as words but jumbled
And I have to organise them…

Discussion. Interaction.
Will have to wait
For better words.