One Month On

I have how had my official autism diagnosis for a month. In that month, life has continued to change almost as rapidly as it did before I was diagnosed. My father’s cancer diagnosis has obviously changed my priorities with regard to how I spend my limited energy over the coming months. My financial situation has once more become difficult and precarious and is causing me considerable amounts of anxiety. And I have, with huge regret, realised that I cannot, at this time, continue with the maths degree that I so badly wanted to finish, so it is time to let go, to stop pushing, and to admit that I have simply run out of time and energy.

Obviously, life is still a long way from where I’d like it to be. My sleep patterns are still poor, which is not great, but they’re better than they were a few months ago. I’m now managing to leave the flat around twice a week, which is a slight improvement. When I do go out I am slightly better able to cope because I am more aware of which strategies work for me and I’m learning to give myself more recovery time afterwards.

I have now started, very slowly, to eat just a little better than I have been doing, which is no bad thing, since I saw a full-length photo of myself recently and was slightly shocked at how thin I looked. I finally weighed myself a couple of days ago and discovered that I’ve lost a stone since last summer, simply because I have felt too sick and anxious to cope with food. This is not good – I was not trying to lose weight, particularly not in that way, and I am just lucky that I was in good enough physical condition to start with that my body could cope. I am also still drinking too much alcohol in order to cope, but am starting to try to cut down just a bit in order not to do too much more damage to my physical health.

However, despite all the difficulties mentioned above, the persistent insomnia, the struggles to go out, and the continuing dysfunctional relationship with both food and alcohol, there are signs that things are improving. My husband and several friends have remarked that they perceive my underlying mental state to be improved and, even though I’m still getting some extremely sad, angry, and regretful moments, I’m starting to accept things as they are in a way that I didn’t before my formal diagnosis.

There were several people who said, before my diagnosis, that since I knew I was autistic, they knew I was autistic, and my friends and family accepted that I was autistic, there really wasn’t any necessity for me to pursue a formal diagnosis in order to understand myself. What none of these people understood, however, was my need for validation, reassurance that I hadn’t simply imagined the whole thing, and the huge huge confidence that the formal diagnosis has given me. This might not be necessary for everyone, but for me it was essential. And it really has made a massive difference to my life.

The formal diagnosis also, for me, marked the end of the old life, and the beginning of the new one. The process of discovery in the preceding months was like a sort of introduction, perhaps an overture before the curtain was raised at the beginning of the first act, or maybe the preface before the start of chapter one. My old life has been demolished, and now the process of rebuilding can begin.

There is obviously a lot of relief that the process of seeking a diagnosis is now over, and I feel, even more than previously, that my life now makes sense in a way that it never previously did. As I predicted in the last few paragraphs of Why Bother, the diagnosis has finally given me full permission to stop regarding myself as a naughty, lazy, failure of a human being. I also feel liberated from the pressure to “succeed” that has pervaded my whole life so far. There is still a long way to go and I still, frequently, feel that I am not entitled to breathe the air and that the world would be a better place without me, but I am still only a month into the new life, and there’s nearly half a century of the old one to analyse, reevaluate, and reframe.

Furthermore, I have to go through the process of mourning the life I might have had if only it had been recognised that I was autistic before I got to my mid 40s. There are still difficult topics to tackle – the mental health professionals who failed for two decades to recognise it, my childhood, the incessant, triggering, references to small children when I try to research autistic traits, and where I fit, if at all, into the autistic community (I am used to being alone and to shying away from being part of any sort of group, and discovering that there are others who experience so many of the same things as I do is, for me, somewhat disconcerting).

But one month after diagnosis there is a calm, even more so than that I felt after discovery. I strongly believe that there is a very good chance that my mental health will, eventually, be better than it has been for decades, possibly even than ever before. I am already, after just four weeks, much more confident about describing myself as autistic, and feeling that I have a right to do so. I’m also treating myself much more gently than I did previously – because now I have official permission!

I’m certain there will be yet more phases to go through, and not all will be easy, but maybe, just maybe, I will eventually rebuild a life that works. And it will be a better life than the one that officially ended four weeks ago.

Letting Go

Apologies for yet another of these “journal type” posts. I had hoped that this blog would be just a little bit more balanced than it has been recently, and I’d still like to explore particular aspects of autism and create something a bit more useful, but, as I said right at the start, it is also, for me, part of the process of dealing with life and of trying to work out where to go from here!

I have spent the last few days feeling utterly shattered. This is partly because I managed to leave the flat a bit more than usual at the end of last week, and partly because I am starting to absorb everything that has happened over the last few weeks and preceding few months. Furthermore, it has become obvious that trying to struggle through learning advanced mathematics and completing assignments and sitting an exam in a few months time is totally and utterly beyond me right now. No matter how much I “put my mind to it”, it just isn’t happening. There are some times in life where no amount of effort will make something possible, and this is one of them. I had the same experience when I abandoned my DPhil 20 years ago – I wanted it so much, I wanted desperately to complete it, but sometimes, no matter how hard you search, there isn’t any more energy there. At that point there is nothing to do but accept that you need to stop, to give up, and to recover as best you can and make a new plan.

The process of acceptance is something I’m finding a bit odd, and also rather confusing. On the one hand I feel a huge relief that I can stop, breathe, and take some of the pressure off myself, but on the other, I feel somewhat bereft and directionless and a bit lost and I’m wondering what I’m supposed to do now.

The basic answer to that last question is, of course, obvious. I have plenty of things that still need doing – there is laundry and admin and trying to remember to eat and take care of myself. I also have lots of books and DVDs and so on that should keep me amused for a while. To many people this might sound like a great holiday, some sort of lovely blissful time – I now have permission to lie around in bed at home, watching the telly, reading anything I want, eating as much chocolate as I like, while just making the occasional list and chucking a load of laundry into the machine from time to time.

Except that this isn’t a holiday. It isn’t a break from the tough stuff – it IS the tough stuff. It has now taken me over a week to get enough brain cells together to even think about making a list. I am struggling to eat anything at all during the day as it just makes me feel sick and I’m having to force myself to nibble small quantities of high calorie food just to maintain my weight. I can’t concentrate to read most days, and I often find the light and sound from the TV terribly overstimulating. Strangely, the laundry is probably the best bit of the whole lot, though the noise from the washing machine sometimes makes me want to beat my head against the wall!

The above paragraph makes it obvious that I’m still very much recovering from burnout, and explains why I’m so unable to do more than leave the flat from time to time and the very occasional thing. And, on one level, it does give me a set of goals to aim for – eating proper meals, reading a few pages of a book, sorting out the random papers on my desk. On a small scale I have goals.

But the larger scale is more problematic. And this is where the dichotomy between feeling relieved and feeling lost is pertinent.

Getting my autism diagnosis is a huge relief. Learning that the struggles I’ve experienced all my life are the result of my brain working differently from the majority of brains is hugely enlightening, liberating, and exonerating. I know now that I was never able to fit into the world in the way that most people can because I was different from the start and I always will be. I’ve always known I wasn’t like most other people, but never really thought much of it because it was the way the world was for me, but I continually failed at things in a way that shouldn’t have been the case given how much I was working for them. Acknowledging that difference is really really helpful – in the same way that when we were discovering we were unable to have children one of the most helpful things I read was a paragraph in a book that explained that one of the difficulties of being childless is that it immediately marks you out as “different” in society because so many people do have families (and spend a great deal of time talking about them) that you will inevitably be an outsider on many occasions. That paragraph made me realise something I hadn’t hitherto realised – I was already different (I knew that much before autism was even considered) and my failure to produce a family made me even more different, even more of an outsider in society.

Acknowledging that feeling of “otherness” was really important to me then, as it is now. I have changed from being “wrong normal” to “right different”, which is good, because it means I can finally relax (as much as that’ll ever be possible for me), be myself, and set myself more realistic targets that allow me enough time for rest and recuperation in between and take into account how much just being out in the world exhausts me and drains my energy.

Finally, breathe. Stop. The battle is over. I can pause. Phew.

But what now?

And here is where the lost feeling comes in. Because the problem with not discovering you’re autistic until you’re 45, and with having achieved good exam results at school, and with having spent your entire life striving for “success” of some description is that without that ambition and those goals and those life plans, you feel somewhat cast adrift – I’m free, yes, from the expectations that I will now ever “get better” and be a high-flying something or other, but I’m also, now, somewhat directionless – floating around in an ocean and I don’t know which way to swim. The training I received in my youth was all based on me getting a good career, living a “normal” successful life. All my assumptions about my life included a full-time job, a family, and a house – that was the life I was prepared for. I never learnt about the benefits system, or what to do if you can’t work, or how to relax, or how to ask for help and support – none of those things was on my radar. I’m having to learn them pretty much from the beginning, in my 40s. This is a big ask – a complete rethink on my life philosophy. I’m also going to have to work out what I can actually do with my life that will take me beyond simply staring at the TV all day every day, because, even with my changed reality, I hope to be able to do a little more than that at some point.

So I look around and try to ascertain what others do with their lives. How do people who have neither a job nor family fill their days? What is life then for?

It seems like a wonderful opportunity – I’m sure there are people tied to jobs and families who would love to spend time travelling or pursuing hobbies or whatever, but I’m not only decidedly short on finances for travelling and so on, but just being out in the world with people exhausts me so much that any hobby would need to be mainly solitary and done at home. I’m not really looking for answers here, just pondering, and I know in my brain that I need to wait until I’ve recovered further from burnout before I can start to see what level of functionality I actually have and what I’ll ultimately be able to do.

So, I am liberated, free from the need to “perform” any more, free from the need to act the confident high-powered strong woman who I pretended to be for so long. But I am also cast adrift, directionless, like a balloon released and left to its fate, and I believe that I just have to go with both of these things for the time being. The old “rules” are gone. My life has been redefined. And there is no point fighting it, no point trying to cling on to “the way things were before”, because no matter how much I wanted that life to work, it didn’t, and the only way to move forward is to let go, relinquish control, and trust that some way forward will eventually emerge.

One Day After…

72-2017-02-22-12-26-06Head closed
Like a shop
Stocktaking
Sorting.

Body wants pressure
Tight, reassuring
And movement
Repetitive.

It is like a dream
But real.

So much
Explained.
Life finally
Makes sense.

Trying to work out
The feelings.

Many of them.

Relief.
Belief.

Lots of things
I can’t yet identify.

Still seems
Extraordinary.
Me.
Autistic.

But they examined
And tested
And said
It is true.

Very very grateful
For validation
Acceptance
Respect.

None of this
Even heard of
A year ago.

But now
A new future
Ahead…

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…

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!!!

Various Feelings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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