Phased Process

62-2017-01-12-19-01-27I hope you will forgive a somewhat long and indulgent post today. Eventually I’d really like to produce material that will be helpful and instructive and so on, and I might even, once I have things straight in my own head, produce a book, or maybe even another, more “generally informative” blog. There are so many issues that are so important to investigate and to consider – everything from how best to nurture autistic children, through to how to support those even older than I am who make the discovery that they are autistic; a whole range of traits including communication issues and sensory sensitivity and executive functioning and so on; and a huge amount of discussion to be had on all manner of other issues that are only just finding their way into my head and I can’t even quite find the words for yet.

For the time being though, I’m still in the process of trying to get my own life sorted out, and some of these writings form part of the process. I currently have no support from the official services at all, no counsellor, no therapist, nothing, and so I’m aware that I sometimes use this space in lieu of such support. So some of what I write might just be pure waffle that I needed to write somewhere and here was as good a place as any. Some of the time I’m just trying to get things straight in my own head.

In the last week or so I’ve noticed things have changed again. Since the appointment date was fixed for the next assessment (my third try at getting a formal autism diagnosis after the first assessment was stopped by the assessor and the second one was cancelled) I’ve become noticeably more anxious again. My appetite has plummeted, having recovered somewhat, and I’m finding sleep less and less easy again.

However it does feel different from the last time I was waiting for my appointment, for several reasons, and I’ve been trying to understand why. I’ve also been looking back over the last six months, which seem to have comprised a series of “phases”, all of which have felt slightly different, and, I suspect, are part of the balancing process as my autistic neurology comes to terms with discovering, er, my autistic neurology!

The irony of discovering that my head isn’t very good at coping with change by discovering that I have the sort of head that isn’t very good at coping with change and having to cope with the change that ensues from that discovery is not lost on me!

So, we go back to July 2016. Back to the days of “normality”. Back to the days when everything felt ordinary, much as it had done for most of my life. A knowledge that I wasn’t well again and was possibly heading for another breakdown. A confusion as to why I couldn’t get my act together. And a general constant low level depressive mood and anxiety that I was so used to that I didn’t even notice it. I had a figure “zero” on my mood chart, meant to indicate my “norm”, what I regarded as a euthymic mood, but, in retrospect, it was far from “normal”, just what I was used to, as I eventually realised a couple of months later. During those times I would wake each morning feeling the usual struggle, the usual wonder what the point of it was, and the usual knowledge that everything was difficult and hard work, but that was just the way it was and things had to be done. That was normality.

And then we get to August, and going away from home. And my mental health (as I assumed at the time) starting to disintegrate. And, despite the few rumblings earlier in the year and a general “bit eccentric” sort of idea in my head, the “polite disbelief” at the initial concept of being autistic, exacerbated, I suspect, by me not really knowing what being autistic actually meant. I had no more knowledge than most of the rest of society at the time, possibly even less, owing to not having any children and being so uninvolved with the world. But by this stage I felt so absolutely dreadful that I was prepared to listen to almost anything to try to work out why my life kept going so very very wrong, and when you find yourself, as a 45 year old, behaving in a way that would be more naturally associated with a stroppy child and you have no way of controlling it or stopping it, then maybe it’s time to try to find out why.

So there was this initial feeling of disbelief. And also of the notion that I probably wasn’t actually really genuinely “autistic”, but just had one or two traits. I was one of those folk who was just a bit sensitive to life and because I was so mentally ill I just didn’t cope very well. I didn’t think, initially, that I would ever actually define myself as autistic, but saw the suggestions as merely an extension of eccentricity. Again, I still didn’t really understand the nature of the autistic spectrum, and neither did I have the first clue how many of my “eccentricities” would actually start to be revealed as autistic traits as I started to research.

And then I read the book with the list of traits mentioned in The Discovery. And started to take things somewhat more seriously. And went from “this is a side issue that might be useful to be aware of but things will get back to normal soon” to “mind blown, this is my entire life turned upside down”!

And the “polite disbelief” turned to “polite belief” turned to “******************” (there is no word that adequately describes suddenly discovering, after 45 years, that your entire life has been governed by your having a different neurology from the majority of the population, that you’ve been fighting all your life, and that you’ve discovered all this in a matter of weeks and your entire world has completely changed)! And there was huge huge huge shock. And even more huge shock as I started to research just how MANY autistic traits I had, and started to discover about all sorts of things that I thought were just me, weren’t. The whole “autism nicked my schizzle” phase!

And I went from waking up each morning wearily wondering how much more of this difficult life I could take, to waking up (when I managed to go to sleep at all) with my heart pounding so hard I thought it would actually jump out of my chest and this word “autistic” just swimming, almost meaninglessly, round my head. The whole sense of shock and disbelief and whatonearthisthisaboutthen still raging through my system. A bit like when someone dies and you get those few seconds each morning before you remember and then you suddenly remember it all over again and your system goes into shock once more.

And by this time it was early September. And I was struggling to cling on to anything normal at all or to think about anything other than autism, and my Amazon basket was full of autism books and I couldn’t eat or sleep or do anything because my whole system was so utterly overloaded. I went through lists of traits over and over and over. Read blogs, books, anything I could get my hands on. My entire world became about autism, almost to the exclusion of everything else.

And hardly anybody knew what was going on. My husband. A handful of friends. The whole thing seeming so utterly implausible that I couldn’t possibly mention it. I was trying, even, to work out how to even comprehend that I could ever even imagine that I really was autistic. It was surreal, like I was on some sort of weird drug that made the world feel like a total dream. Shock shock shock. Huge shock. What? Me? Really? Over and over. This shock. So obvious. So so obvious. But such a huge shock. Why did this take so long? What now? What even is it all about? My world collapsing.

Then I went to see my doctor, my GP. And the minute we mentioned the word she said “Of course!” and it was totally obvious to her too. And then I entered this time of huge relief, and we started to go back over my life, over 4 decades of memories of stuff happening that had never been explained, and suddenly it was all explained. And I started to chat to a very tiny group of people, and started to unpick my life and started to work through it all. And the feelings kept coming, and I tried to describe them in Various Feelings, and we started to wait impatiently for the formal diagnosis to arrive.

And for most of September and October I hardly slept. And hardly ate. I spent the night times, slightly bizarrely, googling pictures of goats and posting them on my facebook wall. My husband brought me food each day and I nibbled at what I could, which wasn’t very much. My system was in such shock that I could barely function. I cancelled almost everything in my diary as my system just started to close down. I realise now that this was going into burnout and all my energy had just gone. My life seemed so totally crazy and totally different. And I kept wondering if anything would ever feel even vaguely “normal” ever again. And to top it all, the hot water broke in our flat and our living conditions descended from “chaotic” to “borderline disastrous”!

Oddly though, around September time, something else did happen which showed just how much of a toll the masking had been taking. Although I was in a really really strange state, the general level of depression lifted massively. Simply knowing, and understanding, took a whole level of depression away. This, I suspect, was the depression caused by acting, by suppressing who I really was, and had been with me for so long that I didn’t actually notice it was there until it lifted. There was also this sudden feeling that I could be gentle with myself and could stop the frenetic pushing to do everything and to be everything to everyone and to achieve achieve achieve, which had been the cornerstone of my life.

And then I discovered that if I stopped trying to push in that way that I could let myself relax in a way that I hadn’t done before and that if I stopped trying to sit still then my body moved in ways that society had told me for years were strange but from the inside felt totally right. And I spent up to two hours a day rocking and bashing myself on the sofa and all sorts of things emerged from me (I’ll do a post about it sometime) that had been there all along, hidden, just waiting under the surface to be allowed out. I discovered that even after 4 decades of learning and suppression, all my autistic behaviours were there and that all that had happened by me not flapping my hands or by making myself cope with sensory overload to appear “normal” was that I’d been getting progressively more damaged and ill and had sometimes used maladaptive strategies such as alcohol to try to deal with the anxiety.

And all through the autumn I gathered evidence for the assessment, which was set for the end of November. I called my mother and learnt things about my early childhood that I hadn’t previously know and which provided yet more evidence for the “autism hypothesis”. I read book after book, all of which confirmed it over and over and over. And anxiety was heaped on top of anxiety. And the only way I could settle at all was to drink and stim (note: do not inadvertently flap hands while holding a glass of wine – it doesn’t end well for the carpet or the wine)! And there were so many other things going through my head – sadness and anger and relief and excitement and things I’ve written about before and still can’t quite explain properly.

And then the first assessment came and the ensuing disaster plummeted me into crippling depression at the start of December (the full story is in part B of the Blog Guide). I had a series of long shutdowns and episodes without speech, and eventually the spell was broken and I went from no sleep to oversleeping and gradually starting to eat again as my body started to try to repair itself. That phase is the one that has recently ended. And then I made the decision to go public about being autistic and started this blog.

At the start of December I wrote about how Time Stood Still, and I was still in a state of disbelief and still felt that I would, at some point, wake up and it would be August again and I would just have had a really strange dream. I’d gone from disbelief, to tentative belief, to huge shock, and massive relief, and lifting of long-normalised depression, and enormous anxiety, to crushing devastation and invalidation, to starting to fight back, and still my head wasn’t really there, wasn’t really prepared to believe I was autistic without a diagnosis.

But things are different again now. Partly because it is a different year and we have been through the annual time of the short days and I am now, just occasionally, starting to notice the outside world again. Partly because I survived the very very bleak times following the first assessment. Partly because I am now publicly autistic and the reaction to my disclosure has been so overwhelmingly positive and accepted that it has gone a long way to help with the damage done at the first assessment. Partly because I have now learnt so much about autism and am finding strategies to find my way through and have started to engage with the autistic community and to discover how many of my own issues are common to other autistics. Partly because I am not now viewing the forthcoming assessment as a definitive point – I’m aware that getting a formal diagnosis might actually be a long and arduous process and from what I have read, this is not unusual in older people, particularly those assigned female at birth. Partly because there are indications that I might be emerging to some extent from burnout and I do have slightly more functionality than I did a few months ago. Partly because I am starting to learn what my autistic traits are and am learning to work with them rather than fighting against them.

But possibly mainly because I am now writing about being autistic and producing my own narrative to help with the process of discovery (and occasionally writing long indulgent posts like this one). I am learning to talk about it in a way that I would have found unthinkable back in September when even typing the word “autism” into a search seemed so alien and scary that I’d have to go for a little lie down afterwards to recover. I am finding out that going through this huge range of emotions from ecstatic jubilation to suicidal depression is “absolutely normal for the newly-discovered middle-aged autistic” (and probably newly diagnosed autistics of all ages and, to an extent, their carers too) by continuing to read. And, I’m starting to think about a way forward and very very gently getting back to one or two things that, to me, signify “normal life”. It’s slow, and the path is very wobbly and up and down, but it is going, gently, in the right direction.

None of it is particularly easy. And my autistic brain is still fighting furiously with my knowledge brain as they try to reach some sort of equilibrium in my head and sort out what on Earth to do about everything. But I sometimes think that they might, eventually, find some sort of way of working together.

And in the meantime the only thing to do is to accept this latest phase of anxiety regarding the assessment and to cope with it as best I can. I don’t know how many more phases there will be to go through before life achieves some sort of “new normal” and neither do I know when or what that will be. Maybe I will need to write more “head sorting” material in the future in order to make sense of it all and I’ll have a whole new analysis of the process in a few months’ time!

This blog is an interesting beast. No matter how much I want to write about some things and no matter how much I plan, sometimes my head just needs to write what it needs to write.

And letting it is part of the process of discovery!

Uncertainty and Fear

57-2017-02-01-17-28-33I finished the forms. I spent all of yesterday’s energy on them. And today I feel sick and exhausted. But that was to be expected. I’m also really stressed that all the things I was planning to try to do this week haven’t happened. But I can’t do anything about it at this stage. Every time I just feel like I might be getting things back on track I run out of time and energy again.

We have returned the forms and my second referral has gone through. My husband had an e-mail from the assessment centre today and we now have a date for my third assessment – it is in a few weeks’ time, at the end of February. It was quite a detailed and helpful e-mail, although my name was written with the wrong spelling throughout.

So now we start the wait again. The e-mail did speak of assessing whether I just had a few traits, and might be not enough for a diagnosis, and it would be unknown whether they would tell me on the day. And all sorts of other unsettling things. All sorts of unknowns and uncertainties.

And so the uncertainties are once again raging through my own head. Am I imagining all this? Will I once again be sent away with no answers and no help? Will I “fail” the test? And if I do, can we even contemplate the energy to do it again or will we simply give up? And if we give up, then I just have to try and live whatever years of this life I have left as best I can, and the whole autism business will join the whole childlessness business as one of the great unknowns, but the nightmare ended not by the menopause but by my death.

As time goes by I’m now getting less and less confident about the whole thing again. Life has always been like it is. I have struggled for years with it and nobody has ever officially given me an answer that makes sense of it all. I’m not that confident that they will now, given how badly the first assessment went and how they just cancelled the second one (see part B of the Blog Guide for the full story).

When I got the date for the first assessment I was nervous, yes, but I was also excited that it might be the biggest day of my life and the day that provided the answer as to why my life has gone so badly wrong in so many ways for so many decades.

Now I have the date for the third assessment, there isn’t excitement. I’m just scared. Scared that it’ll be as bad as the first, and that I’ll yet again be not believed, and that I’ll be sent away and there’ll be no closure and we’ll just have to stay alive and carry on alone somehow. I feel that this process should have happened years ago, maybe when I was a child with a parent to look after me, or in my early adulthood, before I was middle-aged and exhausted by everything, before I went through two major burnouts, back when there was still hope of building a life, maybe even of being supported enough to survive in the workplace and not ending up as useless as I’ve now become.

But at least the next assessment is in a different place, with a different person. With any luck I won’t ever have to go back to the first hospital ever again, which would be good.

This is another of those “therapy/journal” blog posts. This process is very hard, with many ups and downs, and in the absence of any sort of therapist, some of the downs will inevitably find their way here.

The irony being that getting another appointment, in only a few weeks’ time, from the second referral centre (meaning I don’t have to go back to the hospital), is actually a really big and positive step forward, and my brain knows this. My brain also knows that they can’t possibly tell me what the outcome of the assessment will be until they’ve done the assessment (otherwise there would be no point to autism assessments and diagnoses if they just diagnosed everyone), so of course it’s a whole load of uncertainty, but that doesn’t make it any easier.

Because the fear of it all going wrong again is still there.

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.

Calming Tactics

11-2016-12-15-17-49-32My head.
In a bad place.
Jumpy. Edgy. Like an engine misfiring.
Out of sync.

I rub my face.
Move my legs.
Rock.
Arch my back.
Fidget.
Scratch my head,
Trying not to do too much damage.

The stress triggers an asthmatic cough.
I feel sick.

But.

I am at home. Safe.
So I can press my head into a cushion.
Bash my back against the sofa.
Dig my teeth into my thumb.
Flap my hands hard.
Tense my legs repeatedly.

And start to feel a little better.

Meltdown averted.

Different Language

08-2016-12-09-18-36-23Some of these blog posts are difficult to write. Some are emotionally draining and massively triggering – I’m working on one at the moment that I’m going to have to do paragraph by paragraph because it’s so tough, but I’ll get there in the end, and it’s a post that needs to be written, so I shall persist. Some are about things I want to say and the thoughts are all in my head in concept form but my words aren’t always in a great place so it takes a lot of effort to translate them into readable format.

Some, like this one, are difficult because I’m working at the very limits of my knowledge about a subject that I only started studying a few months ago and I’m still trying to work out what everything means and to construct my own verbal definitions of concepts that I instantly recognised from internal experience as soon as I knew what they actually were. I’m also still reading other people’s blogs and working out which ones I’ll want to share and so on – even blogging is something of a new world to me as my last efforts, years ago, were random and short-lived and I never really got into it in a big way.

I said in the post “Time Stood Still” that I initially called what happened to me at the end of the summer “some sort of mental breakdown” because that was the language I had available to me. That language, familiar to me from years of mental health struggles, diagnosed as anxiety, depression, and eventually bipolar disorder (I still believe these were not misdiagnoses, but they were only part of the full picture, and they are common comorbids with autism), is only partially accurate in my new changed world. I am now learning new terms, terms to describe things that have happened to me throughout my life, which I have only discovered since investigating autism.

What actually happened to me during late summer 2016 was that I entered a spell of autistic burnout. This is, apparently, not recognised by the medical profession, but is seemingly well-known among the adult autistic community in general, and those who are undiagnosed or hiding their condition in particular. I’ll try to write about it more fully when I have the ability to do so, but, for now, the best way I can explain it is that burnout occurs when an autistic person’s energy is exhausted, they can no longer hide their condition, and they go into some sort of extended shutdown and their autistic characteristics become very pronounced.

I believe that this is the second time in my life that I have been in autistic burnout. The first was in 2001, when I was 30. However, this burnout is different from the last, because during the last one I was additionally in a state of nervous breakdown and severe depression as a result of bipolar disorder, so that will have hidden the autistic traits somewhat. I also lived alone at that time so there was nobody around to observe much of my behaviour. And, of course, nobody knew about autism, still less burnout, and at that stage I wasn’t even diagnosed with bipolar disorder – I was just given a packet of citalopram and signed off work for a while, as had happened during a previous breakdown a few years earlier. I eventually saw a psychiatrist who sent me for group CBT for anxiety, and I gradually learnt how to live in the world again, though that was the point at which the high-achieving, high-powered me disappeared from the world. I got back to work, but never to the level I had before, and I never lasted very long in any job – it’s now obvious why.

Looking back, I can now very obviously see the similarities and differences between burnout and breakdown, and can even separate out the parts of the two that occurred simultaneously in 2001, when whichever state was the stronger at the time took over. In both states: I find life very difficult and struggle to function; there is a desire to hide away from the world; I have to cancel things, put my life on hold, and need lots of support. In both, there is strong suicidal ideation (and there have been attempts), and I struggle with basic self care such as keeping up with admin and maintaining a reasonable living environment. I also have dysfunctional relationships with both food and alcohol and any semblance of normal sleep pattern usually goes completely haywire. There are probably more things, but this gives an indication of what I experience during both breakdown and burnout.

However, there are also differences. In breakdown I am still and I oversleep massively. In burnout I hardly sleep at all and I move almost constantly. In breakdown it helps to get out into the world and to be around people. In burnout I need to be alone for most of the time. In breakdown light can elevate my mood. In burnout I’m so hypersensitive to light I sit in the dark wearing sunglasses. In breakdown I generally overeat and crave sweet foods and chocolate. In burnout I struggle to eat at all and want plain white savoury foods above all. In breakdown I can cope with ordinary levels of background noise as well as usual. In burnout I’m really sensitive to sounds and crave silence – even having to watch the TV with the sound turned off and reading the subtitles. In breakdown I have a consistently low mood and am chronically depressed without let up. In burnout my mood fluctuates wildly and periods of depression alternate with much more positive phases.

I’m sure there are more differences too, but those are the ones that I have thus far observed, along with the fact that most of my breakdowns have followed a period of hypomania (my bipolar disorder is classified as Bipolar II), and the two episodes of burnout have followed an extended spell out in the world building a life involving lots of social contact and lots of sensory stimulation. Whether there will be future episodes of either breakdown or burnout I don’t know. The knowledge that I am autistic will now enable me to change my life and possibly to avoid, or at least soften, any future burnout, just as all the work I’ve done over the years has helped me to recognise early signs of both mania and depression and to act on them early enough to reduce the severity of more recent breakdowns.

Everything is starting to make so much more sense now that I’m reviewing my life with the added knowledge of autism. Things that have puzzled me for years are finally becoming clear. Some of the snippets of memories I have from the 2001 breakdown that have never quite made sense with my other breakdowns – my reactions to sound and light, my desire to bang my head repeatedly against something, my lack of sleep, my inability to eat – now make sense when regarded as autistic burnout, and when I compare that time to the present day, it’s very easy to see.

This is one of the reasons that an autism discovery later in life is so big. It’s not just about the present and the future and a change in life from the point of discovery onwards, it’s also about redefining many many past experiences and, to an extent, rewriting the history of my life from a different perspective. It’s a life-changing discovery that changes all of life, from birth to death. The facts of the history don’t change, obviously, since this isn’t time travel, but the perception of past events and the sense now made of previously puzzling experiences by having a whole new language to work with is like a constant stream of new discoveries and realisations that really are mind-blowing!

Written Therapy

07-2016-12-14-15-01-43I wasn’t going to post today. It’s been a slow day, a very slow day, and it has taken until 5 in the afternoon for the fog to clear from my head sufficiently for me to form proper sentences.

I’m also aware that I’m in quite a negative place at the moment. The lack of validation at the truncated assessment two weeks ago is still hitting me hard. I’m still struggling with the huge dissonance caused by uneven recognition of my autism. I have spent almost 20 years in the mental health system in one way or another, seen numerous doctors, counsellors, psychologists, psychiatrists, community psychiatric nurses, cognitive behavioural therapists, mindfulness teachers, and volunteer and charity mental health workers. In two decades, NOT ONE of these people has even mentioned autism to me. Not a single one.

The recognition that I am autistic is the single most important thing that I need in order to start to repair the damage done by 4 decades of masking, the thing that, had it happened years ago, could have helped me live a happier and better life. But in all those years, nobody said anything at all. I was sent for CBT to enable me to go to supermarkets and do shopping – it taught me immense willpower and fortitude, it taught me that it was normal to feel sick and exhausted. So I ploughed on through life and that was my normal. I smiled and assumed everybody felt the same. Until the point when I could no longer manage and my body gave up on me and I ended up ill and collapsed.

And two weeks ago, having even told the assessor that I’d spent my whole life asking for help the best way I could and being told I was so intelligent I’d be able to cope, the same thing happened again – I was told that my levels of articulacy (when asked a question to which I have a well-scripted and oft-rehearsed answer) were inconsistent with an autism diagnosis and the assessment was stopped after less than an hour and I was told that I’d have to return in January to see someone else as I was “so complicated.” I’m still trying to write it up fully, but it is immensely triggering and difficult.

Then I went ahead with starting this blog and full disclosure. The decision to disclose was an easy one – not because it was an easy thing to do (outing myself about something of such massive proportions without official say so was way beyond my confidence level that I would even be believed) but because I couldn’t figure a way that life would be worth continuing with if I didn’t disclose. In the perpetual debate as to whether to choose a rock or a hard place, the decision is made somewhat easier if the rock is freshly erupted from a volcano and is still on fire!

And so I disclosed. And received a whole host of positive responses – Of course you’re autistic. You didn’t know? Yes, it’s absolutely obvious. Me too and I knew instantly you were. I assumed you’d been diagnosed years ago… and so on and so on and so on. Some of these people have known me in person for decades, some I’ve not met but they picked it up simply from online behaviour, some hadn’t thought of it but the minute I said it they said how much sense it made and how obvious it is.

So what’s the deal? Every book I’ve ever read, every quiz I’ve ever done, every list of traits, people who know me (who I honestly expected to say “Really?” and be as shocked and surprised as I was) all scream autism at the top of their voices.

Yet the medics seem to have some sort of blind spot?

This single thing that could dramatically improve the lives and health of so many people like me is being ignored. My head is wrestling with this in a big way. I simply don’t understand. What is the matter with these people?

After a calm early evening yesterday I became very angry about it late last night. As a consequence I spent most of this morning in a state of shutdown. I was still in a fairly bad state when I finally managed to drag myself out of bed shortly after midday.

I absolutely believe that when the turmoil is settled down discovering I am autistic will be a massively positive thing and I’m very keen to embrace the positive bits and find out what my strengths actually are (the things I can really do, not the things that I’ve trained to do but are counter to my natural aptitude and achieved through immensely hard work) and how I can make a better life. Since I always was autistic and always will be, I might as well make the best of it and learn how to look after myself properly, using appropriate strategies to compensate for my impairments while positively embracing any strengths I might have.

However, I also want to tell the truth. Getting up and trying to achieve something today was tough. And I share the words below partly because they are the truth, but also because someone else might need to read them sometime and know that they’re not alone. Positivity has a great place in the world. But sometimes it is more comforting to know that somebody else understands.

Slow Start

My head isn’t working right.
Everything is irritating me.
Not at ease with the world.
The thought of doing anything, impossible.
Annoyances from the last few days racing round my head.
Anger and frustration.
My legs and feet tense, moving back and forth.
Picking my skin. Chewing my fingers.
Almost paralysed on the sofa.
My brain knows there are things to do.
I cannot reach them.
There is me, and there is everything else.
Noises surround me.
I am anxious and edgy.
Thoughts fragmented.
Speech great effort.

I need to meltdown.
To press the reset button.
But it can’t be made any more than stopped.
And I am stuck.
Searching my mind for a way to feel better.

I shuffle to the fridge.
Get a “breakfast drink”
And sip the cold liquid through a straw,
Rocking on the sofa
While the weatherman on the telly
Gives the early afternoon forecast.

Movement isn’t working.
So try compression.
I wrap myself tightly in neoprene supports.
And the pressure begins to work.
And I start to calm.

It is three in the afternoon.
I am almost ready to start the day.

Various Feelings

06-2016-12-09-15-28-38Relieved. So relieved it wasn’t my fault.
How different I was.
The times I failed.
The things I couldn’t do.
I’m just wired differently.
I always was.

Angry. So angry that it took so long to find out.
That nobody knew.
Expectations so high
I could never fulfil them.
Naughty and lazy.
That’s what I thought.

Contented. So contented to have discovered.
Found the real me.
At long long last.
Finally allowing myself
A more gentle life.
Recovery time.

Sad. So sad for the lost years of my youth.
Pretending, wasting energy.
Having to start over
Middle aged and tired.
Rebuilding
A shattered life.

Hopeful. So full of hope for a new life.
New strategies and plans.
Learning what works.
Better for me.
Being myself.
Finally relaxing.

Broken. So very very broken.
Always was.
Always will be.
Ambitions shattered.
Permanent.
Impaired.

Excited. So excited by the information.
Others are like me.
A new interest.
Obsessive learning.
Books and articles.
My life explained.

Scared. So scared by the newness of it all.
Going to get it wrong at first.
So much information.
New words and sensitivities.
Needing to explain
But I hardly understand.

Stimmy. So stimmy as soon as I allowed it.
The release as I give up on stillness.
Allowed to fidget.
Fiddle, chew, flap, rock.
Bash, jump, rub, sway.
Instinctive. Natural. Beautiful.

Frustrated. So frustrated with waiting.
For official recognition.
For any help at all.
For someone to see
What is obviously true
And to believe me.

Grateful. So grateful for a wonderful spouse.
Supportive through dark times.
Caring, and loving the new me.
Equally fascinated and obviously
Also wired like I am.
Our marriage explained.

Shocked. So shocked that this is the reality of my life.
Totally unexpected.
Just how many things.
Mind blown
By the massive revelations
About myself.

Calm. So calm for the first time ever.
I hadn’t realised
The world was so tough for me.
But now I do I can retreat
When I need
Into my own safe place.

Damaged. So damaged by the difficulties.
But nobody knew, not even me.
Trauma internalised.
Mental illness.
Will take time
To sort it all out.

Optimistic. So optimistic for the future.
Recovery and adapting.
Learning and strategies.
New ambitions and goals
Suitable for autistic me.
Making it work.

The Background

02-2016-12-08-13-47-41At the beginning of August 2016 I was living a normal life. Maybe not “normal” in the sense that many would call normal, but normal for me. I’d just turned 45, my husband and I were about to celebrate our 14th wedding anniversary, and we’d still failed to unpack or sort the chaos in our small flat following a rushed move a couple of years earlier. I spent my days studying when I could, playing music, running, being with our animals, and forgetting to eat lunch. All as usual.

I had, however, started to feel unwell again during the previous year. I’ve struggled with my mental health for decades, and was diagnosed first with anxiety and depression, then later with bipolar disorder. But I’d been reasonably stable since around 2013, had started to play the viola in orchestras again, and had generally spent much more time out in the world, reconnecting with friends, trying to rebuild my life, in the hope that I might one day be able to work again and be back to some sort of genuine “normal”.

But my health had started to decline. I’d had to drop a concert and several chamber music sessions, withdraw from my Open University study yet again, pull out of some races I’d planned to run, and by July I’d been back to my GP and picked up a prescription for the medication I’d successfully come off in 2013. It seemed obvious that I was headed for another breakdown, another episode of depression.

However, looking back now, there were things that didn’t tally with the descent into breakdown. For many years, I assiduously kept a mood diary. Just a simple cross in a box each day, to indicate an elated or depressed mood. My mood was still reasonably stable. A little under, but nothing that would indicate a severe mood shift. On the same chart I had a box into which I’d write a “score” for anxiety each day. The anxiety measurement was consistently high, and rising. That anxiety perhaps explained why I spent so much time feeling sick, why I would suddenly panic and shake for no apparent reason. I needed to calm myself somehow.

I was also perpetually exhausted. Going out to rehearsals sapped my energy and left me worn out and needing to sleep for days. I couldn’t drag myself out of bed much before ten or eleven, even on the best mornings. I’d go shopping to the supermarket and buy a small trolley load of groceries then come home and need to sleep for a couple of hours before I could put them away. That would then be me finished for the day. Going out for lunch or dinner would entail a two day recovery period. I’d had times like this before, but things were getting noticeably worse – no matter how well I ate, or how much mindfulness I practised, or what CBT tools I used, I was bone-numbingly exhausted whenever I went out.

A few people suggested chronic fatigue syndrome, but I knew that wasn’t right. I was still running, and once I’d recovered from the exhaustion I could easily do a 50K training run. Although I was really struggling at races – at the Brighton Marathon expo I’d had to take my husband with me to collect my bib as I’d been hardly able to speak to tell them my name. When other runners chatted to me during marathons I felt my legs get weaker. I got to an aid station only 30K into an ultra (no distance for me) and was unable to get a cup of tea because I had a huge panic. I sat by the side of the trail, shaking and in tears, before eventually pulling out of the race, assuming I had the flu because I felt so ill.

But the summer was approaching. I knew things would be quieter and I’d be able to catch up on sleep and get some rest. I could also pause my training schedule, chill out a bit, and I’d planned to spend much of the summer playing orchestral and chamber music and catching up with friends. I knew it would be busy and I’d be camping, but I also knew it was something I enjoyed. I’d even bought a new tent!

And so I set off with my tent, but without any idea of what was going to happen. I didn’t know then that I was only days away from something that would start to trigger a chain of events that would change my life for ever. Neither was I aware that the next few weeks and months would be an emotional rollercoaster like nothing I’d ever experienced before, and that the biggest discovery of my life was about to occur.