Storm Clouds

It feels as though storm clouds are gathering in my head these last few days. I’m not sure why, and I can’t work out if there’s anything I can do about it, but I have that feeling that I’m building the sort of tension that will eventually lead to meltdown or shutdown. But not yet. Somehow the energy is yet to be released. Things are too controlled. Maybe, knowing I have a weekend of things to do out in the world means that I’m keeping control somehow. I have that feeling of wanting to cry, but not being able to.

It’s an unsettling feeling, though not totally bad. I don’t even think the overload in my head and the build up of emotions (many of which I’m struggling to identify for alexythmic reasons) is entirely negative. It’s just that I can feel a gradual build up. Of something. I’m trying to analyse what that something is. I’m trying to judge whether some sort of big stimming session would help. I don’t know. It’s a very edgy feeling.

This is the fifth attempt I’ve had at writing about it. What has emerged as a common theme in the first four attempts is that this state is a mixture of two lots of emotion. One lot could probably be called negative, and the other, positive. They are existing inside my head simultaneously, and both pouring these strong, but not totally identifiable, feelings into my system. I get emotions like this. I always have, except when too depressed, or taking large quantities of medication, which seems to blank many of my feelings out anyway. One reason I hesitate to take medication is that much of it takes away things that I value – my appreciation of music, my excitement in the world, and so on.

And so, these huge waves of emotion keep washing over me, and I’m trying to untangle them in order to deal with them. Maybe a therapist would help with this, but I don’t have one, so I’m trying to do it on my own. Although it’s becoming obvious from trying to write it down as best I can that the same things are recurring over and over and my mind is still trying to deal with them. I’ve almost certainly written about them here before, and I apologise for what is probably terrible repetition (my husband says that he is used to me saying everything 98 times) but it seems that this need for repetition, for reassurance, for rehearsing the same argument over and over is probably one of my autistic traits too – something I need to do to get things clear in my mind.

And so the negative thoughts:

The constant nagging knowledge that my life will be limited because I simply don’t have the productive energy that most people do because I’m using so much of my energy to cope with my environment and to process language. I don’t like being limited, but decades of experience have shown me that the consequences of not consciously limiting my life and of trying to “be like everybody else” are poor mental health and catastrophic burnout. I am furious about this. I do not want to have to limit my life, but I must, and I know I must. I have to learn to be gentler, and allow recovery time.

I’m still not fully able to explain to people what being autistic really means. I’m still encountering “yes, but we all get tired…” types of comments, and I’m not yet able to articulate in words that what I mean is something different and that I’m not on about it being the end of a long week and I just fancy a bit of a lie-in. I need to write a blog post about this, I know I do. It is nibbling at my insides (yes, it feels like that) and I need to deal with it. Ditto the current controversies about stim-toys and spinners. I have so many and various thoughts about the whole thing, but I can’t make them into words currently, and that is frustrating me.

And talk of schools and classrooms and so on keeps pulling me back to my own childhood, the door onto which I had closed, I thought for good, until last year, when it had to be forced open. And once it was open, it was really useful for getting my diagnosis, but it hasn’t brought back floods of joyful memories, but of a time when my main objectives were to stave off bullying, to learn to behave, and to achieve good results academically. I had no chew toys or spinners – so I chewed my tie and my jumper and I played with bits from my pencil case and got into trouble for doodling during lessons (among other things).

The late diagnosis thing still irks me. The fact that I had to get THIS broken before anybody noticed that I was autistic. The fact that I was born at a time in history when the world didn’t know about people like me. I’m still sad and angry and regretful at so much of the first 45 years of my life. I’m still furious with the mental health specialists who didn’t know. Today we talk about acceptance being preferable to awareness – even the most basic awareness 20 years ago of autism in those of us who were AFAB might have saved me so much heartbreak.

And here I am, a 45-year-old burnt out non-binary autistic, going through the menopause, learning who I am, trying to rebuild my life, and doing it, currently, without help from anyone except a husband and friends. And I often feel like I am breaking, like I just want to vanish off the face of the Earth, because my youth has gone, and I want to cry for all these things, because they’re still bothering me.

But the positive thoughts are also strong:

The relief at no longer feeling the pressure to be a high flyer. The knowledge that I have a disability (and yes, for me, it is disabling – there is much to be investigated regarding models of disability, but that is not for now) and therefore I can stop beating myself up when I don’t achieve what I thought I should be able to is reassuring. The knowledge that the levels of self-care that I need are now “permitted” is such a huge relief, so liberating, and even joyful. I don’t have to be some kind of superhero any more – I can built this new life and stop pretending to be someone I’m not.

Most people I know are being massively supportive. I’m hugely lucky to have most of them in my life. Far from being deserted by old friends, I’m still, even, making new ones, people who care enough to be interested, people who read this blog and who are helped, people who understand the difficulties, and some who do not but are investing their time and energy and are willing to learn and be caring and understanding. This makes what I could call “big feels” – I don’t have a better expression than that currently. Like so often these days, I just hope people know what I mean.

And though I cannot change the past or do anything about my childhood or its difficulties, I’m now massively enjoying allowing myself to explore the world that has now opened up of toys and things to fiddle with and things that I can buy for myself without anybody to tell me not to. I can sit and stare at my glow in the dark spinner until it runs out of glow, I can roll the ball around on my fidget cube for hours at a time, I can have all the toys now that I never had as a child, and because I am old and spend the majority of my time at home alone nobody will tell me off for doing these things. I am making up for lost time in a big way, finally releasing all the bits of me that have been hidden all these years.

And the fact that the diagnosis has come at all, even this late, is still enough on its own to make me cry with happiness. The relief, the liberation, the knowledge of who I am and why I am and how I am. The permission to be something other, the explanation of why I’ve felt as I have all my life, and the solving of hundreds and thousands of mysteries from the last 45 years. The letting go of the old expectations, the shift to a neurological identity and a gender identity that feels properly comfortable to me, rather than one I was taught was the case. The hope that I will eventually recover from this burnout and will eventually get through this phase and that life will be better than it ever has been, and that I’ll eventually build a life that will be right for me.

And part of what is causing these emotions feels like some sort of huge “sigh of relief” from my entire being. I read about labels and words and why do I need the descriptor “autistic” if I know who I am. For me, I needed that descriptor to SHOW me who I am. Learning about what it means to be autistic is teaching me how to be who I am – because after 4 decades of acting roles, my real self has become somewhat obscured and needs a little help to emerge. I’ve had a lot of training to be someone else. I have a lot to discover. The minute I knew, and I allowed myself, and I learnt for the first time in my life to follow my instincts, things felt very very different.

And each time I’ve tried to write about this, these simultaneous bunches of feelings keep emerging, over and over again. Not even oscillating, like the states described in my earlier post, but together. Sadness and anger and regret alongside relief and liberation and happiness.

And the word at the end of every piece is still “autistic”, as if I’m still trying to make my head accept it fully, embrace it fully, and be able to go out into the world and live it fully. I want to do that, so very much. I know that it will not always be easy – but I do not shy away from difficulty and I never have.

Even writing it all down like this has actually changed how I feel, released some of the energy that I had when I started typing around half an hour ago. I’m calmer. The storm clouds have rolled on past for now. They will be back. The next meltdown and next shutdown will happen at some point, but typing everything up like this has had a healing effect for now, sorted things out a little. If anyone’s still reading, then thank you for indulging me. It has helped.

Changed Life

My life is an interesting mix at the moment. I say “interesting” because one of my ways of coping with things is to be “interested” by them and to learn. Feeling emotions is, on the whole, difficult and complicated, and I’ve never received any training in how to feel things, so it confuses me somewhat. However, the education system I went through did provide me with ample training on how to learn and analyse things, so I tend to retreat into learning and analysis whenever possible. My head is wired in such a way that I have wondered all my life why school spent so much time teaching me the easy stuff (for example, mathematics), but so little teaching the difficult stuff (for example, what to do in a tea break at work). I realise now that that might be because many people don’t naturally go off and learn mathematics for fun just because it’s interesting, and most people seem to have some innate knowledge of how to cope with tea breaks and haven’t had to spend years observing other people to learn what to do and how to handle such problematic situations.

Anyway, there are two conflicting strands intertwining in my head at the moment. The shock of my father’s diagnosis (see Reactions to Diagnoses) is still very present (although now, over a week in, I am starting, slowly, to process it), and I’m beginning to work out how to adjust my life in order to spend some time with him during the next few months. I’m trying to focus on sorting out the practicalities of visits and arrangements at the moment, and my priority is to use whatever energy I can to do what I need to do in a timely manner.

But I’m also acutely aware that I currently have very limited energy. Interestingly, other things in my life have suddenly become less important. I have, for the time being, abandoned any thoughts of participating in running races. I am still very burnt out, and while I recognise how wonderful running is for me and for my health in general, what I need right now is to learn how to stop pushing myself and to rest. Coping with the overstimulation out in the world is something I’m finding difficult at the moment, and pushing myself into massive physical exertion only overtaxes my system further. I’m also having huge sensory issues with running kit, which is a different sort of fabric from my usual soft cotton t-shirts, and I cannot reliably wear such clothes at the moment without sometimes encountering waves of nausea. Furthermore, getting dressed at all is often still really challenging for me, so getting changed and changed again uses up so much energy that it’s really not a valuable use of resources. And that’s before I start on the hours of build up needed even to leave the flat at the moment! I fully intend to return to running seriously again, especially the long distances that are so fabulous, but I can easily put it on hold for now, while I recover. I need to get my energy back, work out how to deal with the crowds at races so I don’t end up crashing out of them like I did last year, and maybe I’ll ease myself back in via halves and marathons first, then return to ultras in 2018.

I’m trying to keep a bit of music going, but, for now, only familiar and relatively low pressure stuff. This time last year I was preparing to play solo Hindemith as part of a gig, and to perform a concerto in the summer, but this year I am sticking to a bit of gentle orchestral stuff and maybe a bit of fun chamber music should the opportunity arise. Nothing that requires hours of intensive practice or any great pressure – even the pressure of finding concert clothes and getting out of the flat to the gig and being surrounded by people and the sensory demands of the outside world is quite enough to cope with.

The other really difficult decision I need to make might well be forced upon me anyway soon. For years now I’ve been studying maths with the Open University. It’s been brilliant, but it’s also been a really rocky ride because my health has failed so many times over the years. Things have also changed massively with the way that the courses and degrees are organised and funded over the years, and for the last couple of years I’ve been desperately trying to finish my degree before it vanishes completely. The University have been very good, and the tutors I’ve had have been nothing short of excellent in their support, but I fear that I have now reached the end of the line. I cannot see how I can continue to work at the level I need to for the time being. Unlike running and music, however, which can be picked up when I’m better, I fear this really is the end for the maths. Had this happened 10 years ago I would simply have taken a year or so out then carried on, but that is now impossible (very long boring story to do with government funding, modules, student loans, deferrals, degree programmes and so on).

My husband is going to try to contact the OU and see whether there is anything to be salvaged (if there is, then we’ll do it), but that, in itself, is a problem because they will only speak to me and I’m not up to having the discussion right now. The problem with needing help is that in order to get help you have to be well enough to ask for help and if you’re not well enough to ask then you just slip off the radar and vanish – the same happened to me with disability benefits – I just gave up. I can’t contemplate any of it at the moment – all my energy is needed just for survival. Furthermore, any hopes that I would eventually “get better properly” and be able to use a decent maths degree (during the times I *can* work my marks are often high and might, with good health, have led to an excellent degree) to establish a good career, are now gone. The problems I have with energy levels and executive functioning and coping out in the world when surrounded by other people are the result of me being autistic and that is permanent. Just finding enough strategies to COPE at all with life is going to be a big deal – I now know that the possibility of a “successful career” is gone and that if I ever manage to work again it will have to be a very different sort of work from that I had in mind when I hoped to “recover” from whatever it was that meant I kept breaking.

So, life feels like it is changing rapidly. Priorities are altering, and the upheaval continues. My life, which, a year ago, I had been hoping to build up, has shrunk back down to something much more modest. Doing 100 mile races, performing concertos, and getting a good maths degree all seem to be in a different universe right now. My relationship with my family is in the process of changing significantly, my ambitions for life are undergoing a time of readjustment, and my entire identity has altered. I’ve moved from simply “not being very female” to actively describing myself as non-binary and I’ve discovered a world I couldn’t even have imagined existed a few months ago. It’s also still only seven months since the chain of events started that would lead me to discover, a few weeks later, that what I’d regarded as “normal” for the last 45 years was in fact “autistic”, and eventually to be diagnosed with Autism Spectrum Disorder just 2 weeks ago today. It is all really really life-changing.

Interestingly though, two weeks after diagnosis, my husband has remarked that for all the current problems in life, he perceives an underlying wellness in me that he hasn’t seen for a very long time. For all the upheavals, and all the strife, and the current difficulties, it would seem that the process of accepting who I really am IS eventually going to lead to a better life. It has become obvious from the “facebook memories” feature that for all my external optimism about life a year ago I was already really struggling, and the signs of impending burnout were already there – the life that I was still rebuilding was unsustainable, but I just didn’t know it.

And, now I am finally emerging from the diagnostic procedure itself, then, following shortly afterwards, the news from my father, I am starting to accept my changed life in a way that I wouldn’t have done previously. The angst I felt before diagnosis (even when everyone round me was telling me that of course I was autistic and go gently on myself and so on) is starting to recede and I feel, oddly, like a “more confident autistic”. For the first time in my life I am learning to take pressure OFF myself. For the first time ever, I’m able to tell myself that my head DOES work differently from the heads of most other people and that it’s true, what I mean by “tired” is different from what many other people mean by it (not all – obviously there are those who have other chronic conditions and illnesses and so on – I’m not referring to them, but to the population as a whole, to the people who CAN go out to work every day and so on). I am learning that being autistic means that my system gets exhausted JUST BY EXISTING, and I therefore need more rest than most people do. I am allowing myself to rest more FOR THE FIRST TIME IN MY LIFE, and I’m no longer forcing myself to constantly push through the bad feelings.

I’m finally letting go of the notion that I need to be all things to all people – I scroll past questions on facebook that I know I could answer, but sometimes I let someone else take the question because I know that typing a lengthy answer will tire me. I look at some of the posts and “advice” in the self-help and fitness related groups and books and I know now that this advice might work really well for neurotypical people, but that it doesn’t work for me because it doesn’t take into account that my neurology is different. Autistic people need a different version of the “self-help” manual – one that takes our neurology into account, one that recognises our differences and the extra work we need to put in in order to exist in the world and the fact that being with other people is utterly exhausting for many of us (maybe I’ll write one sometime)! I am starting to recognise that in order to stay well I have to question much of the “received wisdom” about life, and much of what I’ve learnt through the years. I need to adapt the advice, rethink the strategies, and alter my life accordingly.

And although I’d been learning lots and lots of this on my own, had disclosed my autistic status on this blog (see The Discovery) to anyone who cared to read it, being validated by a professional has, for me, given me the permission to change my life and to feel justified in doing so, which is why what happened two weeks ago today was so important. It turns out that even if the rest of the world was absolutely convinced that I was autistic and did everything they could to help and reassure me, the person who really needed convincing was me.

Autistic or Broken?

58-2017-01-21-22-05-52Yesterday, I put up a post on my Finally Knowing Me page on Facebook (feel free to like/share – it’s all public) about my levels of confidence of receiving a formal autism diagnosis. Before the first assessment I was 80% confident of getting a diagnosis, but 20% doubtful, but, since the first assessment, my confidence has plummeted and now the percentages are reversed and I’d say it was more like 20% confident and 80% doubtful.

Then there was some stuff about expectations and evidence, and how CBT taught me to use the evidence available to disprove my negative thoughts, but actually that’s a really bad idea because the evidence doesn’t disprove them, it reinforces them (there’s a whole blog post to be written about all that stuff at some point).

Something in the post triggered one of my friends to make a comment to the effect that I should remember that I wasn’t broken, but had a different way of seeing the world.

And that comment then triggered my head into realising what it is that’s so frightening about the prospect of not getting a formal autism diagnosis and being officially classed as autistic.

And it runs thus:

If I DO receive an autism diagnosis, and I do fulfil the criteria for being classed as autistic, then that diagnosis will effectively tell me that I have a different way of seeing the world. It will say to me, and to anyone else who cares to take any notice of it, that my neurology is different, that I have a different way of understanding people and communicating with them, a different way of organizing my body, a different way of perceiving light and sound and feeling and so on, and also that this difference has been there all my life (so it explains why my life has gone wrong in so many ways in the past) and that it impairs my ability to function within the bounds of “normal” society. It will also mean that certain things that have been interpreted for years as me being naughty, or picky, or a bit forthright, or disorganised, or lazy, will all now be explained by me just having a different sort of brain.

Conclusion: I am autistic.

However, if I DON’T receive an autism diagnosis, and I don’t fulfil the criteria, the reverse is true. I will not have that protective label. I will not be classed as having a different way of seeing the world. I will be considered, as I have been all my life, as a bit quirky and eccentric. Maybe I’ll manage to get a diagnosis of Sensory Processing Disorder or similar so that my sensory issues are recognised, but that will not help me when I lose my words and am unable to use the telephone. Maybe they’ll say I’m traumatised now, but not recognise my struggles as a child and I will know that I was simply really really bad while trying not to be. Maybe it’ll be back to just bipolar disorder and “ordinary” mental illness, but that won’t explain why my inertia is so high and my executive functioning is so poor. And, when I compare myself to those people who do have an autism diagnosis yet are able to hold down jobs or run homes or whatever, I will know that I can’t do those things not because my brain is different, but because I really am just a mess.

Conclusion: I am broken.

OK, it’s not quite as simple as that, because you have to factor in the fact that I am, evidently, very broken even if I am autistic, partly because I also have bipolar disorder and severe anxiety and so on, and partly because going undiagnosed and unsupported and trying to live a “normal” life for 45 years and suppressing my autistic traits has led to two major burnouts and been very damaging, especially to my mental health, which is shot to pieces. Being autistic doesn’t preclude brokenness any more than being non-autistic protects from it. And equally, there is justification for my difficulties in life as far as having mental health issues alone – my bipolar disorder is sufficiently impairing that it would probably have impacted upon my ability to work and care for myself even if autism had never entered the picture. Furthermore, it might well be that I have enough autistic traits to impact on my life significantly, even if I don’t fit the clinical definition or cannot provide enough evidence.

Add to that the imperfections of the diagnostic system, the fact that in my case it is relying on memories from many decades ago to fill in gaps about my childhood, the 40+ years I’ve been learning and masking and covering up all my difficulties and giving an Oscar-winning performance on the outside while falling apart on the inside, and it really isn’t an exact science.

But, even so, this is at the nub of the situation: if they say I am autistic then I’m not broken, but if they say I’m not autistic then I am broken.

And if I judge myself by non-autistic standards then I’m a terrible failure and my life has been a pointless disaster (but with caveats about mental illness) and I see very little hope for the future because I simply can’t work any harder or be any better than this – I am basically a broken, failed, weak human being and I always will be.

But if I judge myself by autistic standards then I’ve achieved an amazing amount and been incredibly strong throughout my life (even at great cost to my health) and I see that there really might be hope that I could live a gentler, happier life and achieve goals that are more suitable for me – in a few years’ time I could possibly be a mended, successful and strong autistic person.

And all this is swirling round my head at the moment, like some sort of primordial “soup”, out of which sentient life (or in my case, a moderately functional mind) might or might not eventually emerge. It’s almost exactly 6 months now since I had my first meltdown while away on a camping trip – 6 months ago I didn’t have even the vaguest notion that I would ever be thinking of myself as autistic, or that I’d even know a fraction of what I now know about autism, about myself, about my childhood, or about many people around me. At that point I just believed I was a bit tired and that life would carry on as normal once I got home.

So my head is trying to make sense of it all. I’m trying to work out the extent to which I’m autistic, broken, mentally ill, traumatised, and so on. I’m trying to find a health professional who will actually help me with all of these things. I’m trying to come to terms with the fact that I now identify as a non-binary autistic person. I’m trying to live through ordinary day to day life and remember to eat and so on. I’m trying not to let other aspects of my life (music, study, running and so on) fall completely by the wayside. And I’m still in the process of recovery from burnout and waiting to see exactly what level of functionality I will have once I’ve stabilised.

No wonder I get a bit wobbly from time to time.

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!!!