Career Snake!

63-2017-01-02-18-20-57The statistics are, it seems, pretty grim. I haven’t verified the numbers, neither can I give you any details about how many of those considered are formally diagnosed or anything, but I continually see figures indicating that only around 16% of autistic adults are in full-time employment and 32% in any form of employment at all. Even if we allow for quite a lot of error in those figures and consider that there might be people who are unfindable by official statistics compilers, it would still turn out that the proportion of autistic adults sustaining employment is pretty low, and that many of those who do have jobs are working well below their capabilities skillswise owing to the social, sensory, and organisational demands of most jobs.

I have been sliding down the career snake all my life. Despite my issues at primary school and continual bullying through secondary school, I did manage to get quite a good bunch of qualifications, as I mentioned in Expectations Gone. Admittedly, I dropped out of my first degree course, having entirely failed to do what was expected of me or to settle into any sort of proper work routine, but I did manage to succeed second time round and graduated with a good degree. Had you known me in my late teens and early 20s and looked at my qualifications you’d have predicted a bright future for me as far as employment was concerned. The Strong Woman mask also projected an air of confidence that would have added to this impression and it looked, back then, as though I was headed for great things – all I needed to do was put in the work and everything would be fabulous!

However, it was not to be. I did put in the work, lots and lots and lots of it. I based my ambitions on trying to find a career I loved that was compatible with the qualifications I had, and I worked and worked and worked at it. When obstacles were put in my way (I didn’t receive funding to do my master’s degree) I did everything I could to overcome them (got a job to fund myself through and took out a loan to pay the fees). I went without food and heating to save money in order to carry on studying to become an academic because that was the career I really wanted, and I worked until I could work no more.

I had fallen into the trap of believing the idea, still perpetuated today by some of these awful “life improvement” memes, that if you wanted something badly enough and you worked hard enough for it, you would get it.

That is, of course, a fallacy. You are unlikely to achieve your goals if you DON’T work for them, true, but you can’t reverse that statement and say that working for them means you WILL achieve them. It’s simply wrong.

But back then I believed that working hard was the solution. So I did. And by the time my ill-fated DPhil degree studies started to fail I was almost at snapping point with anxiety, financially in trouble, drinking heavily, and dissociating regularly. I didn’t know then that what I was experiencing was dissociation, but I do now. It was with considerable sadness and regret that I abandoned my studies, and with them my dreams, and decided that I simply couldn’t manage to achieve what I’d so badly wanted.

At that point I had no idea that I was even mentally ill, although I evidently was, very. I had no way of asking for help because I didn’t know what sort of help I might need. I had no concept that I had impaired executive functioning and organizing my life and trying to take care of myself while studying almost unsupported and while chronically short of money was simply beyond my abilities. I had the exam results and I believed, therefore, that the only reason I was failing was that I wasn’t putting in the work. It was the only reason I could think of.

A year later, armed with my original degree, I enrolled on a PGCE course. If I wasn’t going to be able to do research and teach undergraduates then I would modify the plan and teach schoolchildren instead. I turned out to be a pretty good teacher. I did well on the PGCE course and got my first job easily (my qualifications were somewhat over the minimum requirements, and my ability to teach “shortage” subjects proved useful). I started my new career, confident that this time all would be well.

Less than three months into the job, all was not well. There was definitely something very wrong with me. I was struggling. I went to my head of department and told him that things weren’t right. He told me that people as clever as me didn’t have problems and I’d be fine. I upped my work level to try to compensate for the things that were going wrong. It didn’t help. I went back to school after the Christmas holiday period and by February I went in search of a doctor because I felt so ill. I got to the surgery and collapsed onto the floor, hardly able to speak. The doctor picked me up and let me recover and I was then signed off work with “debility”. Nobody could really work out what was wrong with me, but I was clearly very unwell. The “debility” label was changed to “anxiety and depression” shortly afterwards and I entered the world of the mentally ill.

I decided that maybe that school had been too unsupportive for me and got another job in a very different school. I did slightly better for a while, but while there my mood started to become chaotic and elevated, and I went into a hypomanic phase (again, not known at the time, but obvious with hindsight). I was also still unable to survive financially – my starting salary was insufficient to cover the rent on my London flat and to service the massive debts I’d incurred while studying. So I applied for a promotion to Head of Department in another school, and got it!

Only a few weeks into the new job I had the breakdown that is now known as “the big one”. It is now evident that I was also in a period of huge autistic burnout. I made my first serious suicide attempts that autumn. My health was destroyed. I never fully recovered from that time, and the slide down the career snake accelerated massively. My days as a high flyer were over and it became a matter of “damage limitation”.

After I’d recovered sufficiently to rejoin the world, helped by my newly acquired husband, I did a bit of supply teaching, and got a part-time job for a while, but I wasn’t really up to it any more. I then had a succession of office jobs – administrator, data entry clerk, personal assistant, and eventually part-time administrative assistant in a small office. All of these jobs I found hugely exhausting and very very difficult. I would be struggling to drive home after a few hours at a part-time job, my eyes almost closing at the wheel. It didn’t matter how early I went to bed or how much exercise I took or how well I ate. I was just knackered. All the time. I finally went off sick from the last job, having, by this time, received a diagnosis of bipolar II disorder, and at the last meeting I had with my boss, the person from occupational health, and the personnel officer for the job, I was almost completely unable to speak. I had come to the end of my office work abilities.

Having failed as an academic, a schoolteacher, and an administrator, I had one last attempt at earning money for myself before succumbing to another cycle of hypomania and depression and breakdown. I answered an advertisement in the local newsagent from a woman who needed a cleaner one day a week. In some ways it was quite a good job. Although the pay was poor and I worked 5 hours without a break, I was often on my own, and I was quite good at it. It was hard physical work as I was expected to do the whole house, change beds, completely clean several bathrooms, and leave everything pretty much immaculate, often after the family had evidently spent a weekend partying. Eventually, however, 5 stone overweight from the quetiapine I was taking, my back and hip gave out under the pressure, sacroiliac pain radiating throughout my body, leaving me unable to walk, let alone clean an entire house in 5 hours. The woman also gave up work temporarily to have another child and I found myself having to cope with people around me and the new baby while I was working and it really wasn’t worth the pain and the triggering effect of the children in order to earn somewhere around what was minimum wage at the time.

By then I had a psychiatrist and a community psychiatric nurse. Both helped me back to some semblance of a life, and I gave up the idea of working completely because it was obvious by then that I wasn’t well enough. I recovered enough to do a part-time language teaching course, but the experience of the course left me needing months to recover. I started studying mathematics with the Open University in order to try to do something with my brain and, rather ambitiously, against all medical advice, did some supply maths teaching in a local secondary school. On the morning of my third day in the job I sat in the school car park in tears of utter exhaustion, knowing that it wasn’t going to work. I loved the job, I wanted to do it. I wanted to be out in the world, teaching, being part of something. But I just couldn’t. Every time I tried I just fell apart and felt so horribly horribly ill the whole time.

I have not worked since I left that job 6 years ago. For nearly a quarter of a century, while many of my peers were climbing some pretty impressive career ladders and becoming academics, businesspeople, scientists, professional musicians, headteachers, top administrators, and so on, I was sliding down my career snake. And no matter how hard I tried to climb back up the snake, the gravity was too strong. And every time I grabbed at a rung of an adjacent ladder, the rung broke and I slid yet further down the snake, before eventually falling off the bottom of its tail, onto the floor.

And it didn’t ever quite make sense why this kept happening, why I couldn’t keep the jobs. It didn’t add up that someone with my qualifications and evident abilities and absolute fierce ambition and desire to work and preparedness to graft and to put the effort in, couldn’t keep even the simplest of jobs. There seemed to be no reason why things just kept going wrong, time after time after time.

Even bipolar disorder didn’t explain it. My bipolar disorder is cyclic. I have hypomanic episodes every few years which lead to crashes into depression. Between those times I am usually stable, moodwise. I have also taken effective medication and developed strategies to help with managing my mood. The treatments and therapies I received for bipolar disorder did, in general, work for bipolar disorder.

But even in the stable times I was still getting sick, and sick in a different way, not a mood way, but an utter exhaustion and unable to cope and having to go off and be silent on my own sort of a way. In a way that has been a mystery for years.

Until I discovered I was autistic. And suddenly those things make sense. And all the failed careers and the lost jobs and eventual unemployment have an obvious cause. Throwing myself constantly into such busy overstimulating environments for years and years has, quite literally, broken me, over and over again. I never had a hope of doing most of those jobs – not because I’m lacking qualifications or not making the effort, but because I am simply unable to cope for extended periods of time in environments that are so hostile to me.

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!

Two Days

44-2016-12-31-12-56-09So you’ve had a two day respite from my random ramblings. Two days of peace and quiet. But now the spell is broken again and I’ve returned!

Interestingly, the reasons I’ve not posted for a couple of days have been absolutely at opposite ends of the scale. On Monday I had a really really bad day, utterly exhausted, no motivation for anything. Even the thought of turning on the computer to write anything was way beyond me, and most of the day was lost to a kind of depressive “I don’t want to be here” sort of haze. The evening was a little better, but by then I was too exhausted. Yesterday, however, I had one of the best days I’ve had in a while. I went out on my own, did a few errands, even managed to have a coffee, and then came home and, since my brain was still functioning reasonably well, started working on some of the admin tasks I now have piling up on my to do list.

My life is often very variable like this, and I have very varying capabilities on different days. I’ve still not really learnt about this in the light of autistic traits, though my brain is flashing at me that I did read something about it somewhere but I can’t exactly remember where and I need to add that to the list of things to investigate in the future. It’s very often the case that I can do something quite well on one day, but be completely incapable of doing the same thing the next day, and vice versa.

Obviously, days like Monday are utterly utterly miserable. I hate the days that are filled with sadness and regret, those days where I really don’t want to be alive any more. I hate feeling so weak and powerless, unable to function properly, stuck inside the flat when there is so much I want to do, unable even to perform simple tasks because my brain simply won’t work. I feel sad that I’m not getting up and going to a productive job (yes, really, I’d love to be able to do a job). I hate the fuzzy feeling in my head, the nausea when I forget to turn the main lights off, the way my heart rate skyrockets whenever someone in one of the adjoining flats or the car park below makes a noise.

These are the days I don’t want to live any more, the days I often have to work hard to stay alive. Although, on Monday, I was so low on energy that I figured never having existed at all would have been easier than actively having to die. I pondered owning a time machine and going back in time to force my mother to abort me, before realising that such an action would set up a temporal paradox that would have Emmett Brown “Great Scott!”ing all over the place. So I stayed in bed for much of the day, which I didn’t enjoy much either, then decamped, listlessly, to the sofa, where I watched an old drama on the TV because I didn’t even have the energy to put a DVD into the machine. I didn’t manage to eat until around five in the afternoon.

Someone on my facebook wall asked if there was any correlation between nutrition the day before and how I felt the day afterwards. There isn’t (except the day after I’ve had a very poor food day I often feel a bit “out of sorts” and that “out of sorts” often turns out to be hunger), but it got me thinking about what correlations there might be. And, once I started to look, there was a big huge one staring me in the face!

For years, I’ve had terrible Mondays. And they’ve been much worse since we moved to the flat. And now it seems obvious that the reason I’m so devoid of energy on a Monday is because of the weekend. At the weekend I’m more likely to go out, more likely to push myself to leave the house, more likely to see people – partly because we can park in town on a weekend and go and have coffee, partly because people are often around at the weekends, and orchestral gigs are often at the weekends, and partly because I am in the same room as my husband 24/7.

When we lived in the house this wasn’t the case – it was big enough for us to have separate rooms to go to, but the flat is not, so we are only metres away from each other all the time, unless one of us goes out. Even *that* level of communication, as opposed to being completely on my own for an average of 14 hours a day during the week, is enough to tire me significantly. And because it didn’t really occur to me, I’ve never made an allowance for it, like I do when I’ve been out to something more obviously social. But although I love being with him, I need solitude. I think he feels the same. We do work together, but we really need our space, especially at the moment with so much else to deal with.

I wondered, on Monday, as I sat there, trying to survive, still desperately miserable about the lack of formal diagnosis (when I started to think that people should be putting trigger warnings on posts about diagnosis I knew that I was really distressed about it), whether I’d reached the lowest point of this whole thing (or certainly a very low local minimum, comparable to that following the first assessment or the time back in the autumn when the hot water failed). I even tried to write about it. There wasn’t much there though, forming thoughts into words was very difficult, and the few lines below took all afternoon to transcribe from the mess in my head.

Rock Bottom?

Have I got there?
Any further to go?
Or is this geological nadir?

Still undiagnosed.
Still burnt out.
Still waiting.

Even written words hard today.
Really struggling.

When will diagnosis be?
When will burnout recovery be?
How long do I have to wait?

Life on hold.

Fortunately, things did start to improve. My husband arrived home in the evening with a part to fix our broken washing machine and while I sipped wine he set to work installing said part. I didn’t manage to test the machine until the next day, but am delighted to report that it now works again!

The next morning I felt a little better, so decided to try to do some of the things I really needed to do. I got up at a fairly reasonable time, even had a small amount of toast for breakfast, and then left the house, on my own! I went to the vet surgery to settle up our bill and collect some ashes. I went to the doctor’s surgery to collect my prescription and to register for online access to the prescription service – having almost lost my words and had them suddenly go into random order on the phone convinced me that it was worth registering to be able to do it online. I bought a sack of animal food from the local country store. And I went for coffee.

I haven’t had a drink in coffee on my own for months. I’ve sometimes managed to get a takeaway coffee to drink in the car, but the effort of communicating with baristas through the noise of the shop has been my absolute limit. If my husband’s been with me then he’s ordered and I’ve managed to sit in, but I haven’t managed to do both for quite a long time. But it was quiet, and as I stood at the counter in my sunglasses, bouncing up and down on my toes, I assessed that there was a quiet corner and I’d be able to manage.

So I had my coffee in. And because I was staying in I had my usual (regular latte and a piece of lemon cheesecake). And I managed. And ate my cheesecake. And drank my coffee. Which was excellent! Admittedly, I rocked back and forth in my seat the whole time, but it didn’t seem to present any problems to the world, so I just sat there quietly doing my own thing. Going out for coffee might seem everyday and trivial to many people, but for me, at the moment, it is a monumental achievement!

When I got home the good day continued, which is why you didn’t get a blog post. Unlike Monday, it wasn’t that I didn’t have the energy to make one, but that I had enough clear-headedness to do something more than writing blog posts. And while I had that sort of clarity in my head I wasn’t going to waste it – so I set up a calendar for 2017, and a list of dates on which I’ve been asked to do things, and a list of people to contact about those things. I sent a few e-mails, just the first ones, mainly the simple things that were either wanting information that was easy to access, or that were gigs I definitely can’t do because I know they’ll be too much. I still have more people to contact, but the ball is rolling. Life became just that little bit more sorted. A little bit better. I am getting there.

And as for today, I’d say it’s been middling, which I’m quite pleased with, given how much I got done yesterday. In my more optimistic moments I allow myself to believe that Monday really was rock bottom and things might improve from now on, though I know that this isn’t a strictly linear process, and there will likely be many more ups and downs before things finally settle into something a bit more equilibrious.

We can only wait and see what happens tomorrow!

Bad Day

39-2016-12-30-14-51-49Some days I can write quite coherent, long, and articulate blog posts. Some days I can’t. Yesterday was one of the “can’t” days.

In fact, yesterday was a “can’t” day in general. I spent the morning in bed, hardly able to move, unable to speak for stretches of time, and feeling very very low, very out of place in the world, very sad and angry. Most things I encountered either on social media or the television (with the exception of the film that I’m watching over and over again on DVD) just made me even sadder or angrier. Something on the news about people who worked hard getting rewarded – which is so counter to my experience, having worked my butt off all my life and landed in middle age feeling like it has all been for nothing. Some article online written by a parent going on about the tragedy of her kid being diagnosed autistic – believe me, it’s a greater tragedy not to know and to waste your life chasing impossible dreams. Even the autism groups and blogs about people who received their diagnosis, people who receive help and benefits I can’t even manage to apply for – I have no diagnosis and I feel like I arrived really late to the “autism party” and everyone else knows what to do about it and I don’t because I’ve spent my life learning to be somebody I’m not and I don’t actually fit anywhere at all. I wanted to debate and engage and work out how to say things without it coming across as rude or accidentally insulting somebody or something, but I could hardly find words for anything. I stared at the maths assignment that I was utterly unable even to contemplate and the running shoes and the viola I didn’t have the energy to use and the washing machine I didn’t have the energy to work out how to fix and the list of people I need to e-mail and thought about the things I want to do and how much I do want to do them but how hard some of them might be for me and what I can commit to. I sat for over an hour with my phone, unable even to type a facebook status saying “Bad day today”. The fight was gone. I wished I hadn’t woken up at all. I didn’t even have enough translation power to make the words I’ve now just typed from the muddle and feeling of bad bad angry sad going round my head in a constant loop.

The brain and the iron willpower, as usual, kept me breathing. By evening I was starting to emerge from the shutdown. I managed to eat the dinner that my husband put in front of me. I managed to write a short poem-thing. I didn’t manage to post it on the blog because the effort of working out how to use the computer was beyond me. So I’m posting it today instead. And pulling myself out of the abyss – again.

Today not good.
Words very hard.

Angry about so many things.
Sad about so many things.

So many bad thoughts.

Can’t even find words to say.

My life such a waste.

It is all too late.
Damage all done.

Whole morning shut down.
Jobs not done.
Life falling apart.

Like I am.

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!

Unable to Wait

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This wasn’t the original first post for this blog. I wrote another one, over a month ago, which was to have been posted after things were “properly sorted” and I had the confidence of a piece of paper to enable me to tell my story to the world.

However, “proper sorting” is taking too long. I was told that things would be sorted last week – they were not (more on that in the future) and the effect on me was so catastrophic that I became suicidal and spent 48 hours living one hour at a time, waking in the night screaming, constantly tearful, and hanging on hour by hour, minute by minute.

I’ve never been good at concealing things. I can keep other people’s secrets totally reliably, but all my natural instincts are to be open, straightforward, and plain-speaking about my own life. I have written candidly about my mental health in the past, and for me that is much much easier than concealing the difficulties I’ve experienced. This new facet of my life will be no different. After last week’s disaster I finally started to feel that life was maybe worth living again when I decided that I would proceed with the original plan (slightly modified) with or without the piece of paper. I also now know that getting that piece of paper might be difficult, and a battle, an uphill struggle – the person I saw last week told me that “intelligent women were a problem” and that I was “very complicated”. I became so distressed during the appointment that I ended up self-injuring. My husband and I will continue to fight on, but my new life and way of living has already started and I need to be open about it now because concealing it is destroying me from the inside.

I don’t expect most people reading this will grasp the full enormity of what has happened to me since the summer. I do know that other people have been through the same thing and will fully understand. Some who’ve known me a while and have a little knowledge of their own might not be surprised. Maybe some won’t believe me at all (hence part of the desire for the piece of paper). Some might not have the faintest clue what I’m even going on about and will reach for Google to try to make sense of it all. Or perhaps think I’m even more crackers than I always have been and will wander off for a cup of tea, scratching their heads as they go!!!

However, for me, this is huge. The biggest thing that has ever happened to me. No question. It dwarfs getting married, getting my degree, burying my relatives, even discovering I can’t have children (I’m not talking here about whether things are good or bad, just about their magnitude in my life). This is the biggest. Is it good or bad? The answer at the moment is probably both, to some degree, although the question is much more complicated than that – and a discussion for a future post. In general, though, I believe this new knowledge will transform my life – it already has in many ways.

It has caused me massive swings of emotion over the last few months, from deep depression to relief and excitement, from severe anxiety to calm beautiful acceptance, and has meant that I’ve had vast amounts of new information to process and absorb. It’s still taking lots of energy. I’ve read over 20 books, hundreds of blog posts (one reason I’ve chosen to blog is that others might feel less alone by reading what I will write here), and lurked quietly on groups and pages on facebook, learning as much as I can. I’m probably still going to make mistakes with new language, recently learnt, and I expect I’ll look back on these early posts in a year or so and laugh at myself or cringe, but this blog is now part of the process too. Please forgive any errors while I’m still learning.

And as I am still learning, I’m not really in a position to start answering lots of questions yet – I still have more questions myself than I have answers, and my ability to respond to comments and questions might be somewhat limited for some time to come. My brain is still massively overloaded with new information and I absolutely need to learn everything at my pace, doing my own research, in my own way. That is really really important to me. I have now reached the stage where I can present the initial research and give my paper to conference, but taking questions from the floor will have to wait a while.

I have entered a world that, paradoxically, is completely new but also absolutely familiar to me. I will tell you as much as I can about it all in the weeks to come, but I’m not going to say exactly what it is yet. Let me just say that it has blown my mind, changed my life, and made sense of almost everything. If you already know what it is or have guessed, then don’t reveal it yet in case there are those who like a story. I’ll tell you very soon, I promise – after I’ve given you just a little bit of background in the next post.

I am still very much me. The same me. Much of my life will return to a normal, maybe not that different from the old one, once I have fully recovered from the seismic effects that the discovery is currently having on my brain, but I am learning a new way to live. A gentler, more forgiving way. A way that I hope will make life a bit easier and more suitable for me, now that I finally know what I am dealing with.