For many years, in fact most of my life, I have known that I “have a book in me” and yet I have too-ed and fro-ed to the very edge of writing such a book. With a couple, I got very far down the line, only to experience such cold feet, a feeling of collapse in my sense of purpose to keep going with them, that they got sidelined at the eleventh hour. Something kept stopping me in my tracks and, at the core of the issue, it was that I hadn’t quite got the subject right. I was getting closer but wasn’t quite there yet.
All of them were about “a topic” built around the pivot point of me; the only stance I felt able to write from. I think I always knew this first book, at least, was going to have to be about me as nothing outside of me ever felt specialist enough for me to take a new stance on the material nor, really, to pretend I was interested enough…and that’s not narcism, its Asperger’s. I have always lived life intensely and experientially, as though my own experiences are a laboratory and my mental, emotional and physical health the very focus ranges I use down the microscope as I tirelessly seek (that lifelong fascination) to join dots, notice patterns, make connections between the obscure. I have also always known, somehow, that finding a specialism and making it my own was the key to my wellbeing and so I have gone after this like a long-running quest…even a paradox, of sorts, because I knew the specialism was me, that it lay right under my nose, that I was “home” before even setting off on such a journey, but which angle of me deserved so much focus? As life presented various angles or “stories” that demanded my attention, contenders came up for consideration; so, if my aim was to write about what I “knew” here were my subjects and one, of course, presented more loudly than any other…
However, here was the conundrum. The biggest, most attention seeking yet newsworthy thing about me for the last decade and a half was the state of my health, the chronic illness that kept me on my toes and had, undeniably, thrown up some wonderful stories, connections and anecdotes to uplift and inform a reading public. This material had already been used for my blog and, many times, I thought about compiling it into a book or THE book I knew I had in me. However….that conundrum…I didn’t want to attach myself to this topic in such a permanent form; to become defined by it with my name on the cover of something that could, potentially, outlive me. I feared that if I labelled myself “fibro woman, the author” as so many people do, it would stay attached to me from then on and I would never move on in my recovery process. If my very success or sense of self (“Hi, I’m Helen, author of “my journey through fibro” or whatever I called it) it would be there printed on my cosmic business card forever. It seemed too risky, knowing what I do about the power of the mind and the importance of directing your focus the way you actually want to go, not where you have already been, especially if that has felt stuck. So while there remains no ultimate solution to fibromyalgia, placing my energy there seemed like shooting myself in the foot!
But this new fixation of mine…this is different. Opening up the Asperger’s “thing” (subject of recent posts) hasn’t been about diagnosis of something “wrong” but about recognition and appreciation; seeing myself clearly as though in a mirror that is no longer misty. All the clues were already there; I just didn’t know what to make of them…until now. There was no one thing that tied all my odd traits, and me, together in the coherent way that this lynchpin does and now, having found it, it’s all I want to think about; my new favourite topic, my specialism and hyperfocus. In fact, I realise it has always been my favourite thing to think about, even before it had a name yet I struggled to hold onto it because of that lack of definition and so my mind wondered off to other topics, yes like health challenges. My differences have always been there in full sight and I have always tended to focus on them, because they are so pivotal to every situation in life and so I have (unwittingly) become the expert of the field; what a realisation…like discovering you have a doctorate and can’t even recall putting in the work. Giving the name to it has drawn all this lifetime’s worth of research together, with me at the very crux of it and with so much waiting to be said. I find myself almost bursting to get started on this project, something I never felt about other contenders for “my book”.
The other thing is, I have recently happened upon a treasure box of such incredible reading material and other resources, primarily driven my late diagnosed Aspie women who, just like me, have found they have so much to say about this (see my new Asperger’s Resources page). The progressive quality to all this; such a potent sense of having joined a movement of great enthusiasm and growth, is phenomenally uplifting when you happen upon it and, yes, exciting for me after years of such slog all alone. There are websites and online magazines, videos and meet-ups happening all over the place (though less so in the UK, I have to say). Rather than negativity and that overbearing sense of people struggling and collectively self-pitying or feeling compromised that I all-too-often find in communities around chronic illness (which is not to blame them, given the topic), I’m finding positivity, excitement, empowerment, determination and celebration as the main themes in this area. These are people who have only just got going on their life’s purpose; there is a sense of “rocket launch” about them and I want to share in that momentum. Women who discover this wonderful thing about themselves in their mid-life portion (a time of life when so many neurotypical women are becoming jaded), having wandered around feeling as mystified as I have about their “different” traits all their lives, are burgeoning with the desire to take ownership of their newly labelled state; to explore themselves through new eyes and see where this uniqueness is leading. They don’t feel more broken as a result of this diagnosis; rather they feel more whole as the pieces fall together. Its like living life in reverse!
Put together with others like these (who, like people sensorily starved and kept in solitary confinement for years, tend to passionately embrace this new opportunity for connection with other people that they can relate to and who relate to them…), I am finding so much joy, excitement and sense of community amongst Aspie women, plus the sense that we are “onto something” progressive or, dare I say it, evolutionary. We start to gain a more tangible sense of our future and, yes, it looks brighter. Of course, we’ve had friends before but they’ve probably not been so interested in talking about what we’re really interested in, to the degree we can become intensely embroiled in it so, for years, we have probably learned to keep our mouths shut and our “odd” thoughts to ourselves. Though I have yet to find my local “seam” of community in the UK, I’m still searching and can only assume that making this “my topic” will help me to join in the conversation. Many of us have always suspected that the traits we have, for all they are “different”, are not necessarily broken or regressive but, rather, new, fascinating and of value to this world and now we get to compare notes. This is powerful stuff for women who, for the most part, like to chat but have never had people who were prepared to chat with them about “their special interests” and now, suddenly, we have our audience. In fact, in neurotypical circles, it would be considered wrong, bizarre or plain rude to focus so much on ourselves (so we have learned to bite our lips) and yet we understand that we hold all our most potent gifts within the unique intensity of our tendency to hyperfocus on our own experiences. The glut of new books appearing on this topic is testament to this and I don’t find it off-putting at all that my idea to write my Aspie story “through the eyes of my personal experiences” is far from unique; since each story is entirely different and…as I have found from reading other people’s accounts…incredibly powerful, worthwhile and useful.
In case you can’t tell, I am loving immersing myself in this topic through the eyes of actual Aspie women and their real-life experiences so, I have to assume, my contribution would be received in a similar vein and may be just as useful to others that are newly diagnosed or considering “is this really me?” as some of those books have been to me (and they really have). There is a movement away from the official “text book” approach to autism as an almost clichéd list of traits towards a softer, more inclusive, malleable approach to exploring the sheer range of diversity it encompasses. This is especially so when diagnosing women who present with a somewhat different mix of traits and overcompensations (including the ability to “seem neuotypical”) to males on the spectrum and who, until very recently, were very often not caught in the diagnostic net at all, especially if not picked up in childhood. As the movement to self-diagnose sweeps the floor for these “lost” women there is, at first, a collective sigh of relief and then we are suddenly finding ourselves in good company at last; and good company makes us want to communicate. For those of a type that have not always got on well with groups of more than one other person, writing is the obvious place for us to open up to the collective at last so we take to it like a duck to water, once we know we have our potential audience out there (many of us are weary of talking to ourselves). I also suspect a degree of catharsis is possible to achieve as we offload all the years of bewilderment and, yes, loneliness that can beset an Aspie lifetime and I want a piece of this too; its time to tell my story through positive yet no-holds-barred eyes, with no more tweaking and hard editing for a neurotypical readership. Profound healing can come from such a process, I have no doubt.
Yet, above all (and I really don’t want to loose sight of the beautiful purity of this new wave of motivation to write my book; which is one of the things telling me I am right on track this time) I simply want to shout from the rooftops the overriding joy, new found purpose and understanding that has come out of this diagnosis. It is, no exaggeration, the best thing that ever happened to me and I am not the first late diagnosed woman to have said that, by far. As we pool our stories and our new-found enthusiasm for life, seen through our own unique eyes and not at that somewhat bizarre slant we were forced to give to everything beforehand, we support one another in embracing the reality we were already pre-wired for and so we bring it more clearly into focus and availability for others like us.
There has been a transition period of about four to six weeks as I have really, deeply, profoundly settled into this diagnosis and my reading and exploring around the subject; to the point I now regard my life as “the time before” and the “new era beyond” the penny really dropping about Asperger’s and (surprisingly quickly) things falling into place, including details of my life that had bewildered me for years. The “time after” calls for a certain amount of re-writes of past events, cast in a new light of understanding and not a small amount of new appreciation of all I have been through in a state of blindfold and disorientation, which is what being brought up conditioned to neuotypical “norms” does to you. Honestly, it has been THAT BIG for me and I am reading other women describe something similar occur when it happened to them.
So, with this much to process, I make no early promises about a book (it would be like a bucket of cold water on my new project to make such a thing) but, whether this new fixation of mine develops as a series of blogs or, eventually, a book, I can sense something new and beguiling taking shape for me from this point. Will other health challenges take more of a back seat in my writing? Long term, I really can’t say; however, I do sense that I will be taking a new look at them through the eyes of Asperger’s. For instance, would I have even had fibromyalgia if I hadn’t gone through so many years of unrecognised sensory hypersensitivity whilst feeling misunderstood and like I was struggling so much with what everyone else considers to be the “normal” range of exposures and expectations in life? Who know but I have already uncovered some intriguing links between the two conditions that suggest it may have been a double-act. So, watch this space and (in advance) apologies for the ongoing Asperger’s fixation of my topics….I think it might be like this for a while. They say that living with Asperger’s is like trying to cope with seeing the world quite differently to everyone else. Well, discovering you have Asperger’s is a bit like finding the glasses you were looking all over for were right on the end of your nose and it might take me a while to take in what I am seeing.
For my growing list of Asperger’s Resources follow the link to my new page.