Cyber Housekeeping

Yesterday I did something that I didn’t think I’d ever do in any meaningful way. I returned to twitter.

Twitter and I have a long history (in fact, exactly as long as facebook and I do, since I joined them both on the same day). However, where facebook has provided me with a fairly steady relationship over the years, twitter has been the wild child, the passionate affair that burned brightly and eventually extinguished itself after an obsessive phase with it that saw me unable to go to bed for fear of “missing something” and some sort of falling out with a friend that I never really understood! After 44,400 tweets (or thereabouts, according to my account), we parted company around 5 years ago, and I visited only occasionally, usually to check up on major news events or occasional sporting things.

When I set up this blog I tried to set up a twitter account for it. I knew I should, but didn’t really want to return to my old account as I still wasn’t really sure at the time exactly how open I was eventually going to be about being autistic. The process had become more complicated than when I first joined twitter, and when I tried to log in from the app it wanted a phone number (which I wasn’t prepared to give it) so I just gave up and stuck to facebook.

However, things have changed since then. My friends have, from time to time, tagged my personal facebook account on the page, and, despite attempts to be vaguely circumspect about my identity (I’m not sure why – just that rather a lot of people seem to be so I figured it was the thing to do), it really wouldn’t be difficult to discover who I am. Furthermore, I’ve now reached a stage, since diagnosis, where talking about being autistic is much much easier, and this blog has taken off in a way I could never have predicted (if not in terms of readers, certainly in terms of posts)!

And I kept reading in other people’s blogs about the autistic community on twitter. About #actuallyautistic hashtags, and a whole load of stuff that seemed to suggest that twitter would be yet another source of information about autism – and finding out information about autism is, basically, one of my main reasons for living right now. As usual, the thing that has driven me, back to a social networking site I had given up, is my quest for information. As I’m sure I’ve mentioned before, when I get interested in something, I get VERY interested in it. And autism seems to have become one of my inquiring mind’s most recent victims (the other is the film Chariots of Fire, how it deviates from what really happened, 1920s sprinting in general, the 1924 Paris Olympics, and anything to do with either Harold Abrahams or Eric Liddell)!

So I’ve revamped my old account, complete with old followers and vast numbers of tweets that were probably mainly about tea and biscuits if I remember rightly! I changed the profile picture and cover photo (or whatever they’re called on twitter these days) to the ones associated with this blog and its facebook page, updated my biography to include something about being autistic, and started to engage with folk by tweet again.

So, 2000 or so random victims, who previously expressed an interest in viola playing, mathematics, running, or rats (and cats and other animals), will now likely wonder why they suddenly follow someone called Finally Knowing Me and start receiving tweets from some random autistic blogger! Although I expect discussions of cups of tea and so on will not be completely excluded – will just have to see how it goes because the whole “return to twitter” thing feels somewhat experimental at the moment.

At some point I’d like to tidy up the main pages of this blog a bit too. The Blog Guide is very out of date, the home page no longer really says what I want it to say, and the tags and categories (which I started using in a very random and experimental way because I really didn’t know what I was doing with them at the time) are all over the place. I expect there is a way to add a “twitter button” to it as well! Once I have enough energy and when I can trust myself not to stay on the computer so long that I end up unwell, I’ll try to organize things a bit better. I’m also aware that there are now so many posts here that anyone who arrives afresh might wonder what the heck is going on with it all – I know I would, but then I’m easily confused, so maybe that’s just me!

Everything is all, still, very much a “work in progress” at the moment. Eight months ago even the idea that I might possibly be autistic seemed totally wild and rather bonkers – an outlandish series of suggestions by a few friends! It was only just over six months ago that I first typed the words “I am autistic”, having done some research that indicated rather strongly that the friends were, in fact, correct. I disclosed publicly on this blog four months ago today, following the first rather disastrous attempt to get a formal diagnosis. And I was only, eventually, formally diagnosed seven weeks ago.

So it’s all very new. And I still don’t know what the final result of the whole discovery will be. I don’t know to what extent I will become “an autistic blogger” on any kind of permanent basis, or whether I’ll end up doing something else completely different. Oddly, I keep reading about people who describe discovering they are autistic as “finding their tribe”. I have rather mixed feelings about this – partly because I have actually discovered I’m not as interesting and unique as I thought I was (if you put me into a bucket full of neurotypical folk then I do, indeed, stand out as somewhat different, but if you put me into a bucket full of autistics then I’m actually rather ordinary (it’s the “autism nicked my schizzle” syndrome again))! And partly because I’ve lived without any sort of “tribe” for so long that the notion of belonging to any cohort of people, no matter what sort of people they are, seems somewhat intimidating. I have never had a “tribe” or been part of any sort of group in any meaningful way for any significant length of time. I have existed mainly on my own, as a single unit, and I was actually pretty reluctant even to get married until I discovered a husband who was also a single unit and didn’t expect much in the way of “togetherness”. If I’m going to regard myself as part of any sort of “tribe” or “group” then it’s going to require a bit of a shift of perspective – I’ve not really sought out human company in any great way in my life, and certainly the idea of “group” stuff really feels exceedingly strange.

Anyway, we’ll see how it goes, and we’ll see how twitter goes (and whether I end up with three followers and a few bots (does twitter still have bots?)), and I’ll continue to think about whether I ultimately become some sort of autistic advocate, turn any of these ramblings into some sort of book (though I sometimes get the feeling that there are now so many books that maybe I don’t have a great deal extra to add and should leave that stuff to the professional writers in any case – I’ve never ever believed that I “had a book in me”), and I’ll, obviously, continue to make random discoveries about myself and get used to my changed perspective on life and so on. And, for the time being, I’ll probably continue to subject you gentle readers to a few snapshots of the inside of my head, conveniently translated into word form for easy publication online, partly because, aside for a couple of follow up sessions with my assessor, there is no hapless therapist trying to figure out what’s going on between my ears so I have to do it myself and a blog seems as good a way to do it as any, and partly because one or two folk have told me that it is either educational, or even helpful to them!

Evolving Understanding

Now that I come to see it written down, that title seems really really strange. But I can’t think of a better one, so it’ll have to do. What I’m trying to say is really something along the lines of “I want to write about how my diagnoses (particularly with regard to mental health and neurology) and my understanding of those diagnoses and ability to discuss them has evolved over time” but that’s way too long for a blog title!

In addition to being autistic, I also have bipolar disorder (bipolar II to be precise – which means that my manic episodes are actually called hypomanic episodes and are somewhat more moderate than the full mania of bipolar I, but that my depressive episodes are generally longer and more extreme than the depressive episodes usually associated with bipolar I (there are also other forms of bipolar disorder, including cyclothymia (often called rapid-cycling) and, I believe, something about mixed states or not specified – my knowledge on current bipolar disorder designations is a bit rusty as I’ve not done much work on it recently and I don’t have the time to do a research project on it today)).

I was formally diagnosed with bipolar disorder in 2010, although I had evidently been self-diagnosed for some time before that. I briefly wrote about my experiences back in July 2009, and I was clearly already comfortable with the self-attributed label at that time, so I suspect I had been self-diagnosed for some while before then – I really can’t remember. I have openly and comfortably spoken to anyone who cares to listen about bipolar disorder, depression, and anxiety for many years now, and I’m currently learning to do the same regarding autism. As it’s bipolar day today I had wondered whether simply to share my previous writing about my experiences with bipolar disorder, but when I looked up those writings my rough style and my evident lack of knowledge were just a bit too grating, so I decided to write this post instead.

And so we come to the notion of evolving understanding. It is clear from my 2009 writing that my own understanding of my mental health and neurology has evolved massively in the last 8 years. It is also clear that the understanding of autism in general has evolved massively over the last 8 years. And it is also clear that some of the issues in my life that I attributed to bipolar disorder back in 2009 were obviously related to my being autistic, as this quote, from 2009, shows:

“Every so often I get stressed, sometimes for no apparent reason. And sometimes, as happened when the treadmill broke recently (it was really just the last straw), I go over the edge. I cry uncontrollably, I am unable to focus on anything and incapable of making even simple decisions. Work becomes impossible. I feel terribly guilty. Eating normally becomes impossible. My senses go haywire. I shake uncontrollably. My legs HURT. And the world becomes a very frightening place, full of bright lights and loud noises, where even little old ladies with sticks seem to move at the speed of light. It is worse in the mornings. And, as I am now discovering, rather hard to write down in a way that makes any sense.”

Bipolar disorder, particularly bipolar II, and particularly in those who are AFAB (Assigned Female At Birth), has traditionally been a common misdiagnosis in the days when the understanding of autism was poorer than it is today. I did wonder, when I received my autism diagnosis, whether my bipolar disorder diagnosis would be removed, because so many of the ways the two conditions present and interact can be similar. However, bipolar disorder is also a common comorbid condition with autism, and the prevalence of bipolar disorder in the autistic population is far higher than in the population as a whole. During my assessment there was a long discussion about my mental health and about how bipolar disorder and autism interacted in my life, and I’ve also mentioned this interaction in the post about Different Language. The conclusion was reached that bipolar disorder is, for me, a comorbid condition alongside autism, and the two have to be considered together.

It’s also obvious now, from the quote above, just how many of the characteristics I ascribed entirely to bipolar disorder in 2009 were actually part of my being autistic (“My senses go haywire” and the subsequent descriptions of sensory problems associated with light and sound are obviously autistic characteristics, in hindsight). For the best part of a decade, bipolar disorder was blamed for pretty much everything that was “wrong” with me, and for a decade or so before that it was simply “anxiety and depression”. As life has progressed I’ve steadily acquired more diagnoses (and more “labels”), which might be seen as bad in some ways, but is actually providing me with much greater understanding of how my head works, and I hope, eventually, how to control it sufficiently to live a life of reasonable quality.

Perhaps, when I’m a bit more able to focus than I am currently, I’ll write a bit more about bipolar disorder and how it affects me and how it fits into my life. I’ve spent most of the last decade becoming reasonably competent at managing the condition, through a combination of medication, various talking therapies, mindfulness, and, possibly most important of all, keeping a daily mood diary (which I did for years until summer 2016 when the “autism hypothesis” was formed and things went completely crazy – once I am a bit more settled I shall set up a monitoring system that takes both bipolar disorder and anxiety and autism into account). Although some of these treatments were not totally suitable for me because they exacerbated issues caused by undiagnosed autism, they did, on the whole, work for management of my bipolar disorder – what I need to do now is to adapt them so that they’re working WITH my neurology to improve my mental health, not against it.

And my understanding of mental health issues and neurology continues to evolve, as, I hope do the understandings of others. Part of the reason I write this blog is to try to understand things myself (it is well-known in teaching circles that explaining things to other people is a good way to test understanding) and also to try to help others understand the complicated world inside some of our heads!

I do, however, fear that I’ll look back on that last paragraph (and possibly most of the rest of this blog) in 8 years’ time and think that my “rough style and my evident lack of knowledge were just a bit too grating”, just as with the 2009 writing, so maybe it’s time to stop here.

Euthymic bipolar day to you all!

Talking About It

I described, in Strategy Deployment, how I had dinner in College a few nights ago. The routines and protocols of such dinners are generally well-known to me, and one of those routines is a loose convention that you tend to chat to one of your neighbours during the first course of dinner and another during the second. It’s not a hard and fast “rule”, and who you actually end up chatting to depends a bit upon circumstances, but you can reasonably expect to talk to at least two people during the course of the meal.

On one side of me I had my best friend, who knows everything about what’s been going on in my life over the last eight months. He and I chatted, initially, across the table (we were on a corner) to his other neighbour. My main memory of that conversation was that we discussed the renovation of a pianola, owned by this other person – for me a nice, easy, safe topic of conversation, music and mechanics combined. No problem!

On my other side was another person I know reasonably well, a former tutor of mine from nearly 30 years ago, who I last saw at a dinner in 2013. As the main course arrived, he turned to me and first apologised for ignoring me during the starter (he’d been catching up with his other neighbour), as appropriate, and then he asked me, predictably, what I was doing these days.

There had already been a slight mention of the fact that we’d sat right on the end of the table, in the corner, when we first sat down. My best friend had explained that “there was a reason” we’d chosen those particular seats, and the fact that I was wearing dark glasses gave another clue that things were not “entirely regular”.

So, at the moment the question about “what I was doing these days” was asked, I had a choice. I could either (a) try my hardest to come up with some sort of conversation that made some sort of sense and would be adequate for the occasion, (b) ramble on a bit about “life being interesting” and “a few sensory issues” (to explain the dark glasses), or (c) just give the whole “I just got diagnosed autistic” speech!

A couple of months ago, when I went Out to Dinner, I was pre-diagnosis, and just being out of the flat at any social occasion at all was a huge thing for me. That evening, there were a couple of people there who knew what was going on in my life (one was my best friend, and another is friends on facebook and reads some of these blog posts), but a third friend didn’t know, and, two months ago I wasn’t ready to tell him, in person, by speaking. On that occasion I opted for option (b) and then e-mailed him after the event, sending him the link to this blog to explain more fully.

A month later, just before diagnosis, I was at an orchestra rehearsal, and wanted to explain to another non-facebook friend, what was going on. I managed, just, to get the words out, but was shaking and terrified, even though I knew that she was the sort of person who would be absolutely understanding and, like everyone I’ve so far told, she reacted by saying “Yes, of COURSE, that makes so much sense.” However, being able to articulate, in words, out in the big wide world, to other people who didn’t already know, that I was autistic, was still, at that point, seriously difficult.

Those of you who have been reading this blog since its inception must be wondering how this can possibly be. I’ve now been writing about being autistic, in as much detail as I can persuade my head to produce, for months. Yet just one month ago I could hardly form the spoken words to describe what was going on and two months ago I couldn’t do it at all. Of course, what might or might not have been evident from the early posts of this blog was the absolute fear when I posted The Discovery as to how my news might be received, especially as I was taking a huge gamble by disclosing after the disaster of my first assessment, as described in Too Articulate and Too Complicated. At that point I decided to disclose anyway since I couldn’t work out how to carry on living without doing so, and I got to the point where I’d decided that the risk of losing what remaining social life I had was probably worth taking in order to stop the feelings of no longer wanting to exist. But it wasn’t easy.

However, the blog moved on, the response has actually been amazing, and I’m now typing stuff about being autistic into one of my various devices on pretty much a daily basis.

But I still hadn’t reached the point where I could TALK about it to people who didn’t already know by reading the blog – at least not without almost falling apart on the spot and wishing the ground would swallow me up there and then and never spit me out ever again.

So, now returning to the point at which my former tutor turned to me and asked me “what I was doing these days”, what did I do?

I started with a couple of sentences reminding him that there was a “reason” I was sitting on this side of the table, I mentioned the dark glasses, and then I finally got to the point where I went for option (c) on my list above.

I’m certain I talked too much, and probably didn’t obey the proper rules of back and forth conversation. I also couldn’t quite multitask and eat my dinner at the same time. And my “I’m recently diagnosed autistic and this is how it came about and so on and so on and so on…” script is still very much in its embryonic stage (part of what I’m doing when I write these blog posts is teaching myself how to talk about it, part of what I’m doing when I read other blog posts and articles and books is giving myself the vocabulary to be able to talk about it, and starting to form my own ideas and where I fit in to the autistic world and how being autistic affects my life).

But, for the first time, I told someone who didn’t already know, and managed to do it without falling to pieces and shaking so much that I nearly dropped my drink, or starting to feel my speech fragment, and was able to have some discussion about it.

Admittedly, for me, dinner in College, at a place that has now been familiar to me for the best part of 30 years, feels like a safe environment. I’m lucky to be able to return to the social world, gently, in such a place, following familiar routines, and knowing that the people around me are likely to be sympathetic, and, on the whole, interested. So it was a good place to start.

However, I think the other thing that really helped was the confidence I have gained since I was formally diagnosed. I don’t think I could have had that conversation at this stage without that extra confidence.

But, whatever the circumstances, and whatever the reasons, it was the first time that I had been able to sensibly discuss being autistic with someone who didn’t already know. It was the beginning of being able to talk about it to other people – actual talking, not typing on a blog post, which is very different. I have known since the “autism hypothesis” formed, right back in August 2016, that if the hypothesis turned out to be true then I would need to find ways of talking about it, and I would need to construct scripts and work out how to explain to people (maybe, even in the fullness of time, be able to educate and inform and advocate, who knows). I’m not fully there yet, but I’m a huge step nearer than I was this time last week!

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!

Being Me

50-2017-01-11-20-01-03Life is quite hard at the moment.
Not easy to work out.
Not easy to keep on track.
Not easy to feel OK.

But it feels much more right.
Much less pressure to be normal.
Much less pressure to achieve.
Much less pressure to act.

I finally figured it out.
I do not feel life like most.
I do not need to fit in or chat.
I do not have to suppress stimming.

Although it is so tough I am happy.
Happy to be autistic.
Happy to be non-binary.
Happy to be me.

Because whatever the difficulties.
Whatever the problems.
Whatever the world thinks.
Whatever the strategies
Needed to survive…

The relief at being myself
Is huge.

Massive.

Like a giant elephant…
Or a blue whale…

Or one of those amazing Sequoia trees…

Disclosing Identities

49-2016-12-31-12-56-17I have read several chapters in books and blog posts concerning the advantages and disadvantages of autistic people telling others about discovering they are autistic. As I mentioned in the first post of this blog I was hoping to wait until I had an official diagnosis before disclosing my autistic status to more than a few people who already knew, but since the process of finding anyone who will give me a formal diagnosis is so difficult and could still take many months (I’m rapidly losing faith – my husband e-mailed the triage service again last week to try to ascertain whether there had been any progress at all and has not yet heard back) I had to go ahead anyway – life was simply too difficult when I was keeping something so big a secret.

But being so open about things is something that has, maybe, been easier for me than it is for some people. And, ironically, that ease is produced because I am both privileged in some ways and disadvantaged in others.

First the privilege. I am a white, well-educated, grown-up person. I am literate enough to be able to write coherently and, when my words are good, I’m confident conversing with a wide range of people. I live in a part of the world that is generally open and tolerant to differences (I really hope it stays that way, although, like many, I fear recent events have altered things somewhat – but that is not a discussion I wish to have here and is only mentioned in passing). I rely only on my husband for a living – he knows everything and isn’t the slightest bit worried about any of it. My family seem to be pretty OK about all of it as far as I can tell, and, to be honest, if they’re not, then that’s their problem and they’ll come round to it all eventually or not. My friends are a pretty open-minded cool bunch, and if any of them do take exception then they weren’t real friends anyway so they can just depart and that’ll be the end of it. So far I haven’t noticed anyone treating me any differently from before, and everyone has either responded positively to what I’ve said or has politely kept their mouth shut or doesn’t care anyway. In starting this blog I did put a certain level of guard up against those who might want to cause havoc – maybe there will be some, but so far I’ve been lucky. I also have supportive people around me who will help if that does become a problem.

And then the disadvantage. I am childless and cannot have children. This means that where some worry about any consequences regarding their children if they tell people that they are autistic, I don’t have to bother. It’s simply a part of my life that doesn’t exist. It is one of the greatest sadnesses of my life that I will never have chance to know what it might be like to live in that sort of happy family situation, but in this particular instance it takes off a whole level of complication. I am also unemployed and have been so for many years. My attempts to sustain work have failed over and over again and I eventually reached a level of sickness where I was signed off from work permanently (I’ll write a post at some point about my working life and how it gradually disintegrated). This is bad news in that having a job and being well enough to work would be wonderful from both a life-fulfilment, and financial point of view, but it does mean that I don’t have to worry about telling a boss or colleagues I am autistic or about whether I will keep my job. I have no professional standing in any world, so I cannot lose it! If I ever do get well enough to consider working again then it will have to be as a fully open autistic person, and I might well need many adaptions to working hours, environment, and so on. Even working from home independently would present a massive challenge for me because my ability to communicate regularly is not great and my executive functioning is absolutely shocking.

It also became apparent after the first assessment that concealing my autistic identity was driving me to the brink of suicide. The effort of concealing my new-found knowledge was killing me. The alternative to any consequences of telling the world I was autistic was possibly ending up dead. At that point, as I’ve mentioned in an earlier blog post, I was stuck between a rock and a hard place and the rock was still on fire and had just exploded out of a volcano – so the hard place it was.

At the moment I am still very envious of those who have already received their formal diagnoses, or those who feel comfortably able to live life as self-diagnosed autistics. I’m also envious of those who didn’t have to wait until they were in their mid-40s to discover who they were, and who could adapt their lives and embrace being autistic before they got as sick as I did. Also those who are now receiving their diagnoses as children, who won’t be told all their lives how badly behaved and lazy they are because they have a label that protects them, and who won’t suddenly get a massive shock when they’re middle aged and burnt out, and won’t spend decades in a psychiatric system being subjected to well-intentioned but sometimes harmful treatments. I’m envious of those who have support services helping them, who have therapists to listen to them, and who have had considerate and helpful diagnosticians and so on. Of course I am – I’m human!

But I have also come across stories of people who are much older than I am before they finally discover who they are. I know there will have been autistic people in the past who struggled with life in the way that I struggle with it and who never had any explanation but simply went to their graves thinking that life was really really hard work and difficult and painful. Some will have had even worse times – maybe locked up as a result of other conditions being misdiagnosed (I’ve found tales online of people locked up until their 80s, filled with unsuitable medication, only finally freed from incarceration and a drugged up haze once their autism was recognized). I weep for their lost lives, and I weep for those who I know existed (I was very nearly one of them – my life could so easily have ended in my late 20s) who killed themselves because their lives were so tough, who never got through the burnouts and the breakdowns, and never even discovered they were autistic and that they needed help and compassion and strategies to cope with living in a hostile world.

And I also come across those who are not able to disclose fully their autistic (or gender) identities to those around them. I read about young people, dependent upon their parents for a roof over their heads, whose parents are in denial and don’t want to support them. I know there are people all over the world who don’t have the privileges I do and who are living lives that are not quite right for them and they have no choice about it for whatever reasons.

And yet again I come to the conclusion that for all the comments I’ve had regarding the bravery and honesty of this blog (there have been, embarrassingly, lots), I’m able to be open and honest and write these words because I am lucky.

And it also makes me particularly glad when they help other people in any way.

The Other Realisation

48-2016-12-30-16-06-45In order to describe what the “other realisation” is like, I’ve been imagining my life as being represented by a house, with a couple of new visitors, who’ve never crossed the threshold before. I know it might seem a bit daft, but the analogy works so perfectly in my head that I’m sticking with it.

The house I’m imagining is set in its own land, one of those double-fronted places, with a driveway leading up to the front door. Round the back is a kitchen, and a rusting conservatory with a few plants that are not thriving and need a bit of attention. It’s not a mansion, but a place that at one point could have been a comfortable home, although it’s never really felt quite right and has progressively decayed over the years.

I’ve spent decades sitting in the slightly uncomfortable armchairs in the front room, staring at the wallpaper I didn’t like that much, but despite an extensive search I’ve never really found anything better or anything that actually worked with the way the light came into the room. The telly has always been at just the wrong angle for correct viewing, but I’ve never been able to get it quite right, and I’ve resigned myself to the fact that my interior design skills simply aren’t up to the mark.

Equally, round the back, I’ve never managed to stock the larder in the kitchen adequately, nor have I kept the plants in the conservatory in good order, and no matter how hard I’ve tried, and however nice I’ve made it, sitting in the conservatory has always felt a bit wrong, like I’m not really supposed to be there – like it’s not actually my conservatory. There’s a lovely view from the windows, but, like the telly in the front room, I can never quite see it properly, and I can’t quite work out what’s obscuring it.

The house had been this way for years. It provided shelter, and it could sometimes even be warm and a perfectly adequate home, despite its problems. But it never really felt like home. It was never quite “me”.

And then, in the summer of 2016, the first of the new visitors arrived. Somebody I’d never met before, but I knew, the instant I saw them, that we would be friends for life and that I was going to allow them to do anything they wanted to the house, despite the fact that I hate other people rearranging my furniture. This person, whose name is Autism, drove up the drive in a sports car, announcing their presence, and those who visited the house immediately noticed a huge difference there. The only reason the whole world didn’t know about this new visitor straight away was that I wanted to check they weren’t a figment of my imagination before I told the world that they’d showed up.

Autism took one look at the uncomfortable armchairs, the not-quite-right wallpaper and the angle of the telly and knew that I’d got the whole room wrong and that it would have to be completely redesigned and redecorated. They wondered how on Earth I’d spent so long sitting so awkwardly and told me that they weren’t surprised I had backache sitting on chairs like that, and eyestrain from not quite being able to see the telly, and sheer total frustration at not having ever found the only decent wallpaper shop in town.

So Autism set about redecorating the room. By October 2016 they had found the very best wallpaper and some chairs that, although not quite perfect, would do for the time being while the very best ones are being made. They had sorted the angle of the telly out, and the room, although it wasn’t finished yet, was *almost* perfect.

But only *almost* perfect.

And, once the room was so close to perfection, it was easy to spot the one thing there that was still out of place, that didn’t really fit, and didn’t really work. Only once the uncomfortable chairs had gone, did it become obvious that there was a small collection of ornaments in one corner that really shouldn’t be there. Not unpleasant ornaments, and ones that I’d had all my life, but not really right for this particular room. They just felt, in a vague sort of a way, a bit wrong.

And then the second visitor arrived.

But where the first visitor, Autism, was entirely new and I’d never met them before, the second visitor was somebody who, although I didn’t know their name, I’d known all my life. Had you shown me their picture 10 years ago I’d have recognised them easily, although I’d not have been able to tell you who they were. 20 years ago they’d have been familiar to me and I wouldn’t have known why. 40 years ago I’d have been rather surprised by them, but had they explained who they were in terms that a small child could understand I’d have known they were a friend.

I’d seen them, over the years, hanging about in the village, occasionally saying hello, but never introducing themselves formally. They’d ventured as far as the garden at the back of the house, sometimes leaving a gift on the back doorstep, for which I’ve been grateful, because their gifts have made me feel right.

And, in October, they finally noticed I’d left the back door open for them, and took their first, tentative steps into the house. They just quietly made themselves a cup of tea in the kitchen, then, while Autism was busy demolishing the front of the house, they gently watered the plants in the conservatory and moved them around a bit so that the beautiful view became evident. Eventually they quietly took the ornaments from their location in the front room and put them into the garden shed, where they should have been all along. They didn’t start shouting to the world that they were there, neither did they start tearing the place apart. They just settled in, knowing that I’d be happy to see them and quietly accept their presence when I was ready.

The second visitor’s name is Non-Binary.

And here’s where I break off the analogy and return to reality.

As I discovered I was autistic, I was so desperate to learn more and to find out what on Earth was going on in my life that I started to join groups on facebook. And I discovered that there seemed to be this huge issue with women being underdiagnosed because of the way autism presents in women and because of male stereotypes and all sorts of things (forgive me here if I’m getting stuff muddled – this, like so much in my life at the moment, is somewhat beyond my knowledge and experience, and the whole “gender identity” world is one that I have even less terminology for than the autistic world – I am so out of my depth with a lot of it that I’m treading water furiously just to stay alive).

Anyway, I joined a couple of “women’s autism” groups on facebook back in October, and my instant reaction was “Shit! What have I done? This is so so wrong. I am not a woman and I never have been.”

Let me try to explain. My birth certificate says “female”. I am, apparently, conventionally married to someone who appears to be a man. I am attracted sexually only to people with deep voices and scratchy chins and *redacted for the sake of decency*. These things are clear.

But, that isn’t the whole story. Until October I had not, since childhood, joined, or gone anywhere near, anything that was for “women only”. I will not enter the running races that are for women only. I nearly joined a menopause group on facebook earlier in 2016 when it became obvious that my perimenopausal years had started, but it said women only so I immediately backed off. I broke my own rule, bigtime, to join the autism groups because my desire to learn about autism was so strong. I wonder now whether I’ll be thrown out of them. I’ll take that risk, because, like being autistic, 45 years is quite long enough to pretend and to live the life that society expects rather than the life that works for me. I’m privileged enough (and grateful for that privilege) that I live in a place and have friends who are accepting of all these things and I can be open about them. I know this is massively lucky.

And so, when I “came out” as autistic, I was bound to be amused because there were a few of my friends who had been speculating that I would actually come out as transgender. Not quite, but gender identity is certainly part of the package, so they were close. And the more that I discover about this, the more it seems that neurodiversity and gender fluidity are in some way correlated (again, this is, at the moment, just a feeling and I’m working right at the limits of my rather paltry knowledge – all this is going to take some time to figure out).

Those who know me well have not been even the slightest bit surprised. My mother explicitly told me that the only times she observed me behaving in any sort of “girly” manner as a child was when I was with, and copying, schoolfriends. My best friend, a 78 year old male, has always accepted that we are just small boys playing together. My husband (he is, legally, a husband, though when we use the words “husband” and “wife” at home they always have quotation marks around them, and it’s no accident that my online nickname for his is The WonderSPOUSE) has been ticking the “other” box for gender for years when there’s one available, and is actually much more knowledgeable about gender issues that I am and has helped me to identify the closest term to describe what I really am.

And this isn’t about “being girly” or otherwise. It’s not about cutting my hair short or not wearing pink (which I never did anyway) or throwing skirts away or anything like that. Even as a woman I was quite happy not to be particularly “womanly” – I’ve not worn either make up or bras for two decades because of the sensory issues they cause me. My hair happens to be shoulder length at the moment – I’ve cut quite a few inches off recently to make it easier to deal with, but one of my favourite, lifelong, stims is hair twirling, so I need to keep enough to play with. These things are all surface, and I don’t see them as anything other than coincidental to gender identification. None of that stuff is the point at all.

But what is the point is that it is about feeling more right and more me. The sort of “gifts” that my second visitor would leave on the back doorstep would be such things as arriving at a coffee shop and finding that the toilets are unisex and not divided into men’s and women’s. Always, when this has happened, I know that I can simply go to a toilet that is the right place for me, rather than somewhere that is familiar but a bit wrong. On New Year’s Day 2017 I changed my gender and pronouns on my facebook account – it felt so very right and so very good, a real lovely moment in the midst of all the problems that we’re encountering with the medical profession while trying to get a formal autism diagnosis. It’s really hard to describe why this feels so good and exactly what I mean, and maybe, like autism, it’s going to take me a while to figure it out and the only people who will really understand in the meantime are those who have had similar experiences.

And, just as Non-Binary, my second, quiet, familiar visitor just tentatively made their way in through the back door of the house, I’m not, at this point, making a huge deal out of having finally realised the truth about my gender identity. There will be people in my life, I suspect, who will never come to terms with using they/their pronouns and will continue to use she/her, whatever I do because it is so far from their world view. At the moment I simply don’t have any more energy to fight any more battles – I have to stay alive, reasonably sane, and come to terms with so much other stuff that, for now, both sets of pronouns will sit side by side. My husband continues to use him/his pronouns for similar reasons.

Which is why I used the house analogy at the beginning. Discovering I was autistic has been a massive upheaval and the whole of the front of the house has indeed been totally redesigned – I’m almost shouting “autistic” from the rooftops to anyone who will listen and altering my life to fit round my autistic traits as fast as I possibly can. If you’d told me 6 months ago that I was autistic I’d have thought you’d have taken leave of your senses.

But if you’d told me 6 months, 6 years, or even 36 years ago that I was non-binary (or described what that meant) then I’d just have quietly agreed with you. It’s something I’ve always known, just like the view from the conservatory in my house analogy was always a lovely one – I just needed to move the pot plant in order to be able to see it.

So, in the space of less than six months I’ve redefined myself from whatever I was before to “autistic” and “non-binary” and as far as “coming out” is concerned, that really is now it.

Unless I discover that I’m actually an alien from the planet Zog and life gets any stranger than it already is, in which case I’ll have to write yet another blog post!!!