Lost Day

I woke early, feeling exhausted, and not a proper sort of sleepy exhausted, but an odd sort of depleted exhausted, like all the energy had drained out of me somehow and I could hardly move. I could hear birds, very very loud birds, wood pigeon calls burning the insides of my ears.

I knew I had to be somewhere today. I knew also that getting there would be difficult. I looked at the schedule for the rest of the week, which I had photographed and saved on my phone. I tried to work out what I might be able to skip without causing too much inconvenience or annoyance. My head wouldn’t think very well, so I started to try to type into my phone:

If this were real life and I’m at sensory levels of now and tiredness. Would be schedule looking.

This was how the language emerged from my finger. I knew it was wrong and that it needed editing. And I also know that when WRITTEN language becomes difficult and starts to go wrong in that way, that I’m heading into shutdown. This is something I’m starting to learn, now that I’m actually observing myself with some knowledge, rather than just declaring myself “ill” or declaring that “my head went wrong” as I have done in the past.

I attempted to speak. There was nothing. No surprise there. If the written words are starting to go wrong then the spoken ones are almost certainly non-existent.

It was still early. I still had to get a message to the outside world that I wasn’t going to be where I was expected to be. The best I could do was to message my husband a few words and hope he could interpret what I was trying to say in order to convey some sort of message to those who needed to know that I wouldn’t be appearing for rehearsals this morning. He received the following messages:

Fail now. Is. Words. Morning. Not.

Now. Schubert. Prob. Can’t.

Tell.

Write hard. Speak not. Food not. Later.

And because he has long experience of such communications, he was perfectly able to send a message saying that I wasn’t able to get to the Schubert rehearsal and had asked him to pass on the message and that I didn’t need food and wouldn’t be able to communicate for a while.

At some point during the morning someone brought me a cup of tea and left it outside my tent. I was unable to respond, unable to move from where I was curled up under the duvet, unable to do anything at all for a while. This is all absolutely normal for me at such times, which have been happening since my early childhood. My mother observed the behaviour, still remembers it well, going right back into my early childhood, and even had a word for it, zonking, which I mentioned in Losing The Words.

Having successfully conveyed a message of sorts to the outside world, my brain then simply closed off. I slept a bit. I lay there staring at the side of the tent, a bit of plain fabric being as much visual input as I could take. I didn’t move. I couldn’t move. I don’t usually remember much from these times, just a feeling of being utterly drained, no energy at all, and something like a deep depression, not being able to form thoughts properly, no ability to translate things into words, nothing. My head is simply closed for business and my body follows it. There is nothing to do at that point except wait – it’s like some sort of reset is required before my overstimulated and exhausted brain will function properly again. I don’t respond, I don’t communicate, I just lie there and breathe, nothing more.

After a few hours I regained the ability to type and to form words and typed some of the thoughts that had by then started to emerge from my head into the notes app on my phone. Having established that I could once again produce proper typed sentences, I was then able to contact the outside world by facebook without my husband having to make the sentence structure for me. It was lunchtime. I was aware that I hadn’t eaten or drunk anything all morning (and couldn’t have – something else my mother had observed about zonking was that food was an absolute no during those times, and when I have attempted to eat or to keep functioning I have simply ended up physically sick and it’s been assumed I had some sort of bug or similar).

Somebody brought food and left it outside my tent. I was unable to thank them except online, but was able to eat by mid-afternoon, and was, it seemed, by this stage, quite hungry – even though I didn’t feel any sort of hungry, once I started to eat it was obvious that I was.

It took another couple of hours for the shutdown to be properly over and a further hour for spoken words to fully return. Although I can’t always tell when I’m going IN to shutdown, or that that’s what it is (though I am getting better at recognizing it as I’m learning), it’s really obvious when I’m emerging because I start to stim again, I start to rock and to move and get back to what for me is “normal”, a state of dynamic equilibrium as I like to think of it. For me, being still either means I am masking furiously and working hard to stay still, or I am ill and in shutdown, or I am asleep, or, occasionally, that I am relaxed under a weighted blanket or completely immersed in something or similar. The rest of the time I move, and that movement restarting is always a good sign – it’s the feeling that you didn’t know something was wrong until it was solved, and the minute it’s solved it was obvious how wrong it was before!

My sensory system remained on high alert for the rest of the day – I managed to go and sit in the audience to hear some of my friends singing and playing music, but used earplugs against the applause and was deeply grateful to a friend who asked others to move away from me to give me some space during the performance.

By mid-evening I was able to drive home, where my husband had “the food” (whatever I’m currently eating we call “the food” – I have cyclic obsessions with food where I eat the same thing every day for months, and always have done) ready and waiting for me, and I spent the evening doing all the familiar routines and being with the animals and recharging properly ready for the next day.

But what should have been a day participating was basically lost to a massive shutdown, and there was nothing I could do about it. I would have liked to have been in the rehearsals that morning. I would have liked to go to tea that day. I would have liked to join in the celebratory feasting and dancing (although I knew that the feasting would have been a non-starter anyway and I’d have been eating alone somewhere quiet), but I couldn’t.

But at least I know what causes these times now, and I have a word for them, shutdown, which makes sense to me and enables me to understand what’s going on. At least I have people who are willing to understand it too and to bring me food and so on and to help me out when it happens. And I know that I’m not getting some sort of illness (as has been suspected on many occasions in the past) and that I will feel better in a few hours’ time – I just need to wait, to be on my own, and to have as little input into my system as possible.

Last year, when the same thing happened, all I knew was that I felt inexplicably awful and couldn’t even tell anyone how or why. I spent a night silently crying in my tent in the dark, without food or help, with nobody even knowing where I was because I’d lost all ability to communicate and wasn’t even able to type a message to my husband. And short of “something mental health related or maybe a virus”, I had no idea why I was like that.

This year wasn’t ideal. It’s not really how I want to live my life, missing out on good times, having to skip rehearsals, having to sit on my own because my system can’t cope with much social interaction or noise, and so on. But it is better than the distress of previous years, than the anguish of desperately trying to function, trying to make things work, having to call in with some “unknown illness”, making myself worse by continuing to try to speak or function as I “should”.

I don’t like having to live this “half life”, which is what it feels like. But knowing why these things happen means I’m much less self-blaming, much kinder to myself, gentler to myself. And simply allowing the inevitable shutdown to run its course and not trying to push myself out of it means that I actually recover more quickly and am generally healthier as a result. Maybe once I’m more fully recovered from the recent burnout I’ll be able to do a bit more – I do hope so.

It does still all feel very much like a work in progress still. I have my answer as to why these things happen to me, but I now have to work out the best way to live, which I haven’t quite managed yet.

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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.

Clear Air

The storm didn’t really come in the form of a meltdown in the end. I was so exhausted that it morphed into a shutdown instead.

I’d had a really really busy day. The busiest in months. I went to play in a performance of Mendelssohn’s Elijah with a local choral society – playing my viola from time to time is one of the very few things I didn’t abandon completely when burnout hit. The gig entailed a three hour rehearsal in the afternoon, then being hosted at someone’s house for supper, then the concert in the evening, which also lasted nearly three hours.

I’d done a similar gig last December, but declined the supper invitation and spent the intervening time sitting in the car on my own. This time I braved supper – partly, admittedly, because it was done on a “get in touch if you don’t want to have supper” basis this time around and my “getting in touch” abilities are pretty poor at the moment!

So I’d had this massively long full-on day. I’d been totally open about being autistic and having mental health issues (I’m getting slightly better at talking about it all). I’d kept my sunglasses on for most of the day. I’d coped with eating while sitting on a proper chair at a table and even participated in the conversation over supper a bit. I’d left supper slightly early to give myself some space to be alone before the concert. I’d spent most of the interval sitting on the floor, wearing my ear defenders and rocking back and forth. And I had, of course, played all 90 pages of the viola part of Elijah – twice (perversely, although physically very tiring, that was actually the easy bit)!

I got home and downed a few glasses of wine and ate some cheese, then went for a bath.

And then felt exactly as I had done in the pub episode in Sudden Illness.

I suddenly felt absolutely dreadful, sat up in the bath, unable to keep still, and burst into tears.

And this is where what happens now deviates from what used to happen in the past.

In the past, I would have stoically continued, as I did in the pub, to act as “normally” as possible. I might well have ended up being sick, and would probably have got almost no sleep and have spent the night in bed lying awake, shaking, believing myself to have some sort of illness that I couldn’t quite rationalise. I have pushed on and on in such circumstances so many times.

And the result of that pushing has been a continual decline in my mental health, a continual drain on my energy, and the resulting burnouts and erosion of my functioning abilities. Trying to be strong has, in fact, weakened me. “Faking it until I make it” has not worked – in fact, the more I faked it, the less I made it.

So I sat in the bath and cried, and my husband came to investigate and found a distraught mess. He calmed me down and drank the orange juice that I had asked for not long before as I indicated that I couldn’t drink it. And he also realised that my ability to speak was completely gone. Fortunately he’s used to it – and actually rather reassured now that we know I’m autistic, having thought, for the last fifteen years, that when I didn’t speak to him for hours at a time I was actually cross with him for some misdemeanour!

Then I went to bed, and beat my head against the pillow for a bit, before finally settling down to sleep. And I did sleep, where, in the past, I would have been unlikely to.

The next day my words didn’t return until mid-afternoon. My system finally closed down, and I did little more than lie on the sofa and sleep from time to time. But I felt calmer. The tension had gone. The storm had passed. The air had cleared.

And now I understand why this happens from time to time it feels easier to cope with. I’m not getting ill in the same way I did when I tried to fight through and keep still and so on. Although, perversely, the behaviour I exhibit probably looks more disturbing and maybe even frightening from the outside, from the inside it is very different.

In the past, an outside observer would just have seen someone who seemed like they were unwell and therefore became quiet – I’d have looked as most people expected me to look. But inside I would have been feeling utterly terrible, utterly unable to comprehend why I felt so bad, and in a total state of panic and desperation.

These days an observer would see someone who was completely unable to talk, compulsively rocking, maybe flapping their hands, bashing themselves against things, and even (though I try not to do this too much) hitting their own legs and arms with their fists. The part of me that has spent over 40 years trying to fit into a neurotypical world knows that I must look odd, and even maybe distressing, to the outside observer.

But inside, these things calm me. Inside they feel instinctive and normal and OK and can very quickly make me feel much much better, better enough to settle down to sleep. Better enough to wake the next morning and know that it doesn’t matter if I still can’t speak and I have to draw a letter T on my husband’s skin with my finger to indicate that I’d like a cup of tea.

And he no longer thinks I’m just asking for tea that way because I can’t be bothered to ask properly. And I no longer force the words to return before they are ready, and my brain therefore has time to recover.

It still feels very new, because it is still very new, allowing myself to be like this. I know from reading posts on groups and so on that many late diagnosed autistic people struggle to allow themselves to be who they really are, after decades learning to live a different way. And I’m certainly not always finding it easy – the intersections with the outside world can be particularly difficult at times, and the change from the old life is huge. But I am determined to live as my real self – 45 years was quite long enough to maintain the act that so nearly killed me on many occasions.

So that is the way it now is. And my way is to allow myself to be as fully autistic as I need to be wherever and whenever possible. And to be open about it as much as I can.

And maybe it sounds really odd, but that actually makes me really really happy, because it feels so completely right.

The new life becomes more and more real as time goes on.

Oscillating

The undamped pendulum mentioned in Uncomfortable continues to swing. My life continues to feel like it has some way to go before it settles into whatever my new “normal” becomes.

I don’t imagine, for one moment, that I shall ever achieve the stability that many people seem to in their lives – I’m just not built that way, and I know that monitoring my mood and my functioning abilities and so on will probably always be a part of my life. I know that my abilities and skills are very uneven and that they fluctuate significantly from day to day – yesterday it took me 3 hours to make a cup of tea, but this morning it was less than an hour. And, when I look back through my life, these things have always been the case.

But I do believe that things will eventually settle into something a little less crazy. I’m still only 9 months out from the very first suggestions that I might be autistic and only 11 weeks out from my diagnosis. These are early days, and things I have read by others suggest that life will calm down somewhat over the next year or so.

As I start to recover a little from burnout I’m also pushing myself out into the world a bit more. Strictly speaking I don’t NEED to push myself quite as much as I do (people say to me that I should take time, rest, and so on), but I am keen to get back to things and to do as much as I can (simply because I’m generally interested in stuff I think). The result of the pushing when out is that I’m regressing slightly at home – returning to the simpler comfort food more often, spending more time stimming, losing verbal functionality a bit more often, and so on. I’m starting to work on observing the patterns and looking at ways of monitoring them.

And so, each time I increase my activity, or push myself, or whatever, the oscillations get bigger, and then I need to stop and allow things to settle a bit. I find myself switching, every few days between two basic states – one in which I’m really negative and struggling and finding life tough, and the other in which I’m actually quite positive and optimistic and keen to make plans for the future.

So, during the negative times I end up with these sorts of feelings:

1. I want to hide under the duvet, away from the world, safe underneath a blanket, and just stay indoors in the dark for ever.

2. I do not want to eat, drink, or, sometimes even move. I am anxious and distracted and every tiny thing feels like a huge huge effort.

3. I am hypersensitive to things that I read, and I worry that I’m getting things wrong socially, even online. I constantly find that people don’t react to things the way I expect them to and I feel like my judgement is off somehow.

4. I struggle even to post on this blog or on my facebook wall and don’t feel that I have the right to be around or to even breathe the air. I’m frightened of the whole thing, nervous to post blog links up in case people hate them and don’t want to read them, fearful that I’ve upset people when the number of page likes goes down, and so on.

5. I feel like an alien everywhere and like a total beginner, even within autistic communities such as on social media and the blogging world. It’s like everyone else is somehow a “grown-up” and I’m standing in the corner at the party trying to work out what to do.

6. I feel huge fatigue at the whole “autism thing”. I look at the pile of books and scroll through my feed and I wonder what happened (I’d hardly even heard of any of this a year ago). I feel worn out by the last 9 months, the constant research, the incessant discovery, and I just want to do something different.

7. I sometimes feel totally freaked out by the whole thing. Everything has happened so fast. Suddenly my life was upended and I’m autistic and what on Earth happened there and I don’t know who I am any more, and I just want life to go back to normal and stop throwing weird shit at me.

8. I feel as if it will never get better and that if life is going to be like this for ever I can see very little point continuing with it. I feel useless and believe that I will never be able to contribute anything of real value to society.

And during the positive times I end up with THESE sorts of feelings:

1. I want to be out in the world again, back in my running shoes, back playing in orchestras, going for coffee, seeing people, and so on.

2. I’m even starting to fancy particular foods again on the better days and I can manage to eat a little more and a little more sensibly. I can do laundry and a bit of admin work.

3. I’m better able to respond with humour and more capable of brushing off the difficult stuff using brainpower. I put a more positive interpretation on things that are said and am learning to weed out the “advice” that I now know is not helpful for me. I cope better when the response is not what I was expecting because I know that’s part of my social imagination difficulties and I can rationalise it.

4. I will happily chat away on social media, share blog posts, and even write more posts with a certain level of confidence. If fewer people like the page then it’s no big deal, and if people don’t like me posting links to blog posts then I’m not really worried – folk have a right to choose what they look at or otherwise.

5. I feel that I do have some experience and knowledge about being autistic that I can contribute to the discussions, and when I feel like an outsider I’m perfectly comfortable with that – I’ve never needed a “tribe” before and I don’t really need one now. I can just be me, whatever that turns out to be.

6. I still feel that there is so much to learn about autism and being autistic. There are more books to read, more things to learn, and I have a huge list of things to research and blog about and discover. I’m even diagnosed now and can do this at my pace, and I might even find an area that interests me enough to form part of my future.

7. I feel so much more “at peace” with myself than I’ve ever felt. Discovering that I’m autistic might be new and unfamiliar and a bit crazy, but I know it’s right and it explains so much and I feel so much happier already and am treating myself more gently and appropriately and there’s no way I could go back to the old life, ever, because this new one is so much more ME and I find myself thinking how wonderful it is to have discovered it at last and I want to go and shout it from the rooftops!

8. I feel like there is hope for a much better future. I make plans for things I’d like to do in the next five years and I start to think about what I might like to do with the rest of my life. I feel like I might even be able to do something useful at some point and think about what that might be.

And so, these two states describe my life currently. I oscillate between them approximately every 2-3 days. On the good days I catch up with admin, write blog posts, try to do a little work, maybe play my viola, get some exercise, and sort the house out a little. On the bad days I just try to get through, to survive, and to still be alive at bedtime.

There’s some connection between the amount I push myself and make myself do things and go out into the world and the two states above – sometimes I deliberately maintain a positive “act” of sorts (maybe I am still masking somewhat) in order to do something I want to do or have planned and don’t want to cancel, and the result can be a tumble into the negative state. I’ve also noticed that the negative states often end with me becoming nonverbal, as though they’re caused by my head needing some sort of “reboot” and also that meltdowns are more likely in that state, particularly when I’ve pushed myself out and maintained the “act” described above.

And so the cycle continues, and I expect it will for some time to come as my brain continues to process things and I continue to work out how to deal with such wildly fluctuating moods and energy levels.

I guess it keeps life interesting…

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.