I’m sharing these thoughts because I’ve been swept over by a sort of epiphany that I am on the autistic spectrum and I’m by far from the only one discovering this in my 50s!
The more I delve, the more I (a) discover anecdotes that sound like myself now or as a child/young adult (people with autism can become extremely adept at hiding these traits through mimicry to “fit in” as they mature) (b) find cross-overs, or even ways that undiagnosed autism could start to trigger, other serious health issues and (c) detect a trend of (especially) women remaining undiagnosed and oblivious, well into their middle years. Based on my own reactions, I see how it is possible to quickly dispel any negative sides to gaining a diagnosis because this (albeit belated) exercise in shedding light on ourselves could be one of the best things that ever happened to at least partially solve the never-ending mystery of ourselves. In my case, I am already feeling awash with self-appreciation and relief, not least at unearthing just so many resources, which I find are so relevant to me now. Having felt so alone all my life, especially in this healing journey (always the independent and the maverick), I now find there are many of us, sharing similar experiences, and growing in number all the time as more people realise their quirk.
By the way, I have now run numerous online tests, including the The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) test, which is normally only used in a clinical setting and which takes into account childhood traits (which you may, by now, have “buried”), and the results are compelling. If curious, I suggest you do your own reading, research and testing (link to various tests here; plenty more online) as I plan to focus, here, on how likely it is to get to middle age without realising, rather than listing symptoms or research methods.
Yes, I know, I didn’t consider it either, not for a long time (I’m 51 shortly!) and yet autism and especially Asperger’s did pop up with a certain degree of regularity over the years but I denied it all. When I examine why I denied it, I see that it was mostly suggested in two ways…either by a sibling who used to name-call me “autistic” for his own entertainment and, in the other cases, by someone not really like me at all, who suggested she herself might be Asperger’s so, when I researched it out of curiosity, I refused to admit to myself how this was ringing loud bells in my own case. Also the information I had access to back then, pre internet, was so basic and clinical that it didn’t really sound like me, out of the pages of a fairly dated library textbook (possibly from the late ’80s or ’90s), so I pushed it to one side. Things have move on a lot since then…
Now, the internet is a minefield of autism information; almost too much, so that you have to sift the wheat from the chaff (and there’s a great deal of chaff). Just a short time into my deep-dive on the topic and I can clearly see there are distortions, prejudices, hard-line “medical” opinions (upheld by people who don’t have the “condition” themselves) and a whole lot of other murky pools of information from which I could raise my cup, if I wasn’t more discerning. Thankfully, having the very traits I am investigating here, I find that I am extremely picky….to such a degree I am quickly skipping over some sources, homing in on others, like a surfer picking just the right waves to ride (this is my skill; I do it with whatever topic really interests me, becoming some sort of “expert summariser” in no time because of this assessment filter in my brain). As a result, I am already on the way to some very interesting, positive and all-round affirmative data about what it means to be autistic. As I am seeing it, we are gifted and diverse individuals who happen to be wired different to the mainstream (and yesterday’s post goes some way to explain my favourite theory why we are prone to this difference in “wiring”). In my typically upbeat way, I perceive how this could be the very gift I have been stepping around so assiduously, all of my life, like the great big elephant in the room.
Partly, I admit, this delay in diagnosis has been due to some not insignificant resistance I have to being labelled or diagnosed, worse medicated (that will never happen) or treated like I am “broken”. While any of these remained a risk out there (and they might even now, if I sought diagnosis from the NHS…which sounds like a precarious lottery of a process…so I won’t), I can see I was not ready to hear the news. But I do see the benefit in seeking some sort of confirmation, for those who have been unknowingly going through this for a long time, for reasons which will become apparent by the end of this post (and it surprises me to hear myself say this since I have always resisted labels). I have taken note of Sara Heath of Autonomy, a suport group in the UK, who can apparently help in this regard and I would hope there would be similar professionals in other countries.
Another reason I suspect I managed to skirt around this for so long was that I buried it, in adult life, using alcohol and then parenthood. My relationship with alcohol has always troubled me in that it didn’t seem consistent with character, even when I abused it so often; but, in hindsight, there is no doubt in my mind that I did. I binge drank with friends all through my twenties, quite unable to be “social” without it and this is classic of the Asperger’s type (see Alcohol and Autism plus many other articles). At uni, I soon learned how a quick drink before I went out allowed me to be more fluid, chatty and “normal” seeming from the outset and so I was often a little “gone” before I even reached the pub, being such a lightweight. This led into some pretty traumatic experiences due to far-worsened lack of judement when it came to assessing other people’s intentions (another Asperger weak-spot) or how to behave around other people, so I was walking-wounded emotionally…and in the wrong marriage…by my thirties.
At 31, parenthood took over, and due to the special demands of my daughter and my broken marriage, then the tip into my health-breakdown, I had far too much on my plate to worry about my own psychological profile. By now, I drank much less but bizarre health issues had taken over; keeping me a little more withdrawn from the world with each passing year. Even after I gave up drink altogether, four years ago, this penny didn’t drop; although I now see how my Asperger’s symptoms have become more and more apparent to me, in fact quite inavoidable, especially some all-invasive sensory problems, since my coping mechanism of alcohol was pushed right out of the picture.
More recently, CBD oil has helped as a coping mechanism, though I would add that marijuana is not generally considered a good option for Asperger’s types and I would second that from the experience of my younger days (it can enhance and surpress our various traits in the least helpful balance). So it seems to be the CBD factor rather than the THC ingredient in cannabis that holds potential as a balancing aid, without unwanted side effects, and I will write more about this topic at some point.
Now, thankfully, due to some fresh green shoots of autism approach “out there” and a whole lot of discussion and blogging about high-functioning autism from those with it (and what a creative crowd they are…they feel like family already), I find I am stepping into the field at just the right time. In fact, I’m almost excited…or is that just the sheer relief at finding the missing chapter of the handbook of what it means to be this particular human being. You might expect that I would shun any version of “label” or “diagnosis” still, having been the avoider of these things across all these many years of self-exploration, but I find that, in my new determination to be “more grounded” in my humanness (the material of many of my recent posts), I welcome this attempt to make sense of my human-self. Where autism is concerned, there is so much more info to be had than in the case of, say, fibromyalgia and most of it comes from those people, or the families of, with it. Through information pooling and yes, even a name to hang around it, I find I can start to look forward to moving on from where I have been stood gripping on to a sense of self that was so abstract and slippery its been like cuddling a fish all my life (and with about as much chance of survival, being precariously out of water). Now, I hold out the hope of discovering there are enough of us to form our own unique pond of understanding.
Even the (misfounded) belief I had that autism meant I must be a poor communicator, inept with words, a disliker of metaphor (which is so-obviously not me, the writer and verbose conversationalist, in the right company…) turned out to be the red-herring, since I see now how I have been the mimicker of other humans (a classic autism trait) all my life, to a very accomplished degree, taking my early cue from listening to adults (more so than kids), watching mature TV programs and an avid hunger for books. In other words, I have come to like words, to lose myself in them, to use them as my middleman, my ambassador into an alien world, to hide behind them (when, preferably, typed rather than spoken), then to seem more engaged and socially adept than I really am (when that is not an option). By the time I was 9 or 10, I was a wordsmith beyond my years. Meanwhile, I spoke to and addressed people like I was an adult (even as a young child) and expected them to do likewise to me; feeling such intense frustration and resentment if they attempted any baby-speak in my direction. I also became fiercely independent in my pursuits, shunning all suggestions of teamwork, from a very early age, something which continues to this day. Oh, an of course I have had synesthesia (see my many posts on this) all my life, since my very earliest childhood experiences, something which has finally been linked to autism, according to new research at the University of Sussex (see here).
By pouring myself into books and stepping back into the quiet corners to observe so many situations without others noticing me there, as a child, I now realise how I gathered and collected (in many containers, on many shelves in my mind) all the materials I need to put on a good attempt at being the social and conversational, wordy and bright individual that people met for my first few decades (albeit with a strong theme of introversion, obsessive compulsiveness, a quite bizarre intensity on certain topics and yes, a certain amount of weirdness when it came to my interests). I use big, elaborate words to this day, with an uncanny instinct as to where to place them, often in just the right places through practice…yet I often struggle to know what they mean or, at any rate, to be able to explain their definition coherently to anyone else, should they ask me on the hoof (I’m no Stephen Fry).
Like an actor putting on the performance of their life, I have been putting on mine all my life and (when it comes to being the wordsmith) even enjoying it, since it keeps things very neat yet, in many ways, safe to use words and not feelings as my interface with the world. Unbeknownst to me, some of this wordy persona (less so lately since blogging is my true-voice…) has only been surface deep, a front enabling me to get by in a critical world, so there remains an unfathomable pool of selfhood, still largely unknown to even me since I sense I am not like everyone else…I am the deep end, where you can’t even get your feet on the bottom. Now in my fifties, only fragments of this old performance still remain (since giving up work), like the long-touring repertory theatre that is pushed out to the coastal towns, now a bit shabby and lack lustre. Many other bits of it have been trimmed away from the sheer exhaustion of the attempt at maintaining that old “normal” persona for just so long; so I find myself, at 50, like the Shakespeare play turned into the five-minute act, a reductive version of my former self…only it was never really me in the first place. That reality “act” has only just got started and knowing all this about myself might help make the second half better than the first!
This middle time in my life seems to be the point in my life where (possible) undiagnosed thus unaddressed and unsupported autism has become the bedfellow of chronic fatigue; where “demand avoidance” (another autism trait) has become chronic illness so I can opt out of life when it doesn’t suit me to take part and where Asperger’s has turned me over to all the multiple hypersensitivities of my mid-life crisis. These topics have been the material of my blog for the longest time…and not one mention of autism!
Pausing, with new-found awe and appreciation, I realise I have done very well to come this far.
Because, for years and years, I presented this social and professional, capable and (dare I say it) “normal” version of myself to the world because I had to, to survive at work and in a social setting, to meet a partner, to have a family, to play at being an adult in a world that felt so out of sync it hurt. It got harder and harder, the screw tightening more and more, the facade longing to slip, the outburst to happen, the contrarian in me to rebel when, sigh of relief, I met my future husband and he “got me” and held out a steadying hand. Just as important, he offered to support me while I sorted myself out, providing the income security and safe harbour in a storm that enabled me to surrender for the first time in my life. It was as though I could feel his supportive hands around my waist and hear the words whispered gently in my ear “you can let go now, go on, jump…I’ve got you”, which was the support I never had when I was a child. That was when I unravelled in full….the story of my last 13 years.
I see now what a gargantuan slog the previous 37 had been for me; how I was threadbare from the effort of being the undiagnosed autistic.
Looking back (with no judgement) I see how I never had the support I truly needed as a child, my autism going unnoticed in a noisy family in an era when it was frequently allowed to slip through the net in schools with huge class sizes and in a teaching culture where even the relentless bullying I experienced went completely unnoticed for all those many years. Whilst my teachers may not have noticed my profound differences, my bully sure-as-anything picked up on them as it was these that enabled her to manipulate me so throughly, with me constantly believing her attentions were the overtures of reformed friendship (an autistic-style gullibility with regard to other people’s cognitive processes and intent that led straight into all the manipulations I was subjected to in my first marriage).
Reading wasn’t tackled until I started school (there was simply no exposure, though I caught up very quickly, becoming an above-target reader in no time) but I always loved to draw, from a very early age. My propensity to draw the same pictures over and over again, while making strange guttural noises (unlearned by the time I went to school because of the bullying it attracted, added to by a tendency of my brother to call me “autistic” whenever others said I was “artistic”…though the repeated “favourite”, highly detailed, pictures continued, amongst other more diverse drawing projects, until I was about 10) was considered endearing. My many rituals and superstitious habits designed to get me through the day, counting paving slabs, arranging things in a certain way and my almost religiously convoluted bedtime protocol involving set behaviours and much counting of actions, went unnoticed or were briefly scolded, then ignored. My intense sensitivity to stimuli (lots of it) that others seemed not to notice was utterly missed; partly because I ceased telling anybody due to lack of interest in it. I can recall so much overwhelm at the sheer noise and chaos level in my primary school (all entirely normal for that age-group) that I’m left wondering how much of the “relentless” bullying I recall was really “just” all this afront to my senses, almost every moment of every day, especially in the playground, during breaks, where screaming, pushing and bashing into each other was the apparent norm (I was one of a tiny minority who opted to go home for lunch). My friendships were very limited and surface-deep until secondary school and then still very few in number and quite “niche” (as is the case, once again, now). There is probably more of relevance that I no longer recall from those years but I see how this was all, largely, overcome by my skills in mimicry and secrecy, by self-care (in the sense of developing sophisticated avoidance techniques to get out of doing the many “normal” things I felt I could not face) and by the fact I got away with being labelled a “geek” and “shy”, which was easier to live with than the alternatives.
Just as long as my school grades were OK, and they were often exceptional (especially in subjects where I could mimic what was wanted, though I often lacked depth of understanding in all but empathic subjects) I managed to carve a small corner for myself in which to continue my uniqueness in private. Which I did, until university blew it all into a wider arena and I buried myself in drink, false personas and (by my mid-twenties) an unholy mess, self-created by having been a loose cannon on deck for some time, by then, when it came to matters of career, socialising or choosing who to trust (I was painfully bad at that). It became clear from my very first job that I would never cope in the outside world of conventional unemployment; so I muddled through in some fairly unconventional roles, where I could hide in obscurity and create my own job descriptions, until the pressures of divorce forced me into my first “real” corporate job in my mid-30s. This was when my breakdown happened….an ongoing health crisis throughout which I have, again as is tyical of Asperger’s, been fiercely independent in my research and (alternative) healing approach. I have purposefully built a life for myself where computer interactions and home-routine plus mostly solitary walks take the place of social engagement and outward looking, collaborative pursuits for other people and, to anyone else, my world would seem bizarre though I like it this way.
So you can see, as I can see for myself, how we can get to our middle years and have seemed anything but autistic to ourselves…inspite of our relentless issues, our struggles with the “normal” things that other people cope with, the bizarre repetition of not fitting in with any groups we try to attach to, of apparently offending people or losing friendships entirely when we speak what seems so honest and apparent to us, of sheer exhaustion with life, of feeling too much, of seeming quite different and having different (depths of) interests to everyone else, of being (in every way that we can think of) that little bit “extra”.
As mentioned yesterday, I’ve found a plethora of useful information and am currently reading the account of Philip Wylie (author of Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder): How Seeking a Diagnosis in Adulthood Can Change Your Life), who was finally diagnosed at 50. Another writer whose book is on my list, Barb Cook (her combined anthology of women’s stories with autism is called Spectrum Women: Walking to the Beat of Autism), was already 40 when she first realised, though she suspects her mother was also undiagnosed (it runs in families and I can clearly see the pattern in mine). You can watch a short and very topical video from Barb, called The Chameleons: Women with Autism here (in the side margin of her page). This is just the tip of the iceberg of the many later-life diagnoses that keep popping up on the forums.
One blogger, Star Foster (see below), whose articles I read today, marvelled at the huge response she had had to her first plunge into mentioning autism in an otherwise unrelated blog (it can feel like a high-dive), particularly from undiagnosed women who felt like they might be on the spectrum from what they read in her post and like there was a relief at it being mentioned. In fact, I read that more men than women are diagnosed with autism and yet there seem to be many now-diagnosed women who believe this is a failing of the diagnostic process, not a true representation of the gender split; and I can well imagine. This reminds me of the way that more women “apparently” have chronic illnesses such as fibromyalgia, ME and chronic fatigue; causing me ask, do men get more readily filtered towards a psychological excuse when something goes “wrong” with their health, whereas women (perhaps because they fall through this autism diagnostic net or are more stoic or, even, secretive around psychological differences in case they preyed upon) more often find themselves outside of the loop, left all alone, trying to cope with it all and appear “normal” in a world where the odds are already stacked against them, especially in the workplace. If so, I can imagine how they would eventually fall apart in their physical health too (this new crisis then overshadowing the hidden autism), as happened for me.
So do women take longer to realise they are autistic for any particular reason; for instance (as I did) out of fear of the brand name “psychological” issues and all its connotations (women have received far harsher treatment for such issues than men, historically; see Barb Cook’s video, as above, regarding her mother, for a classic example). Do girls learn to camouflage their autism better than boys, as a survival tactic so they can blend in, as suggested by Marisela Huerta, a psychologist with the Weill Cornell Medical College who observes that, while boys with autism tend to behave starkly different in the playground “girls with autism tend to be quiet and “behave more appropriately” (see article ‘Social Camouflage’ May Lead To Underdiagnosis Of Autism In Girls). The same article goes on to say “Brain imaging shows that girls with autism seem to have less of a disruption in the area of the brain that processes social information” so “girls may be more likely to understand social expectations, even if they can’t fully meet them”; in other words, we play-act our way through the social norms of life to survive.
I’m also fascinated, no surprise, by the link between autism and a “spiritual perspective”, which is how I discovered Star Foster’s post entitled The Spiritual Component of Autism. These are topics I intend to consider.
So, I find myself at the very beginning of a brand new leg of my journey of self-discovery and, as ever, I am deep-diving the material with every bit of research capability and open-mindedness that I can muster. You already know I will share what I find in here. Already, I am keeping a diary of my own realisations and responses as I tap into this new layer of my human self, which I may decide to share as a diary or condense into articles by topic; yet to be decided. As ever, if I can be of help or encouragement to just one other person in a similar situation then I consider that writing effort worthwhile and I am always open to conversation to these topics in the comments below.
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