It’s been an interesting year for friendships and social engagement. I seem to have made and lost, in quick succession, what felt like one of the nicer “in person” friendships of the last few years but there it was; apparently just passing through. Add to that, a more established one made long-ago on the flimsy ground of “circumstantial things in common” (parenting) suddenly ended over the kind of misunderstanding where I used to “give in” and take the flack to make peace but now, somehow, I feel weary of all that apology for things I have no idea that I’ve done so we have severed our convenient acquaintanceship based on coffee and a catch-up about three times a year. Not such a big deal? Well, more so given my entire posse of long standing, more intimate friends have moved away on an exodus trend that I always expected to be part of (yet I’m still here, 30 years later). Its been an interesting time of clearing-out, leaving me a considerable space where friendships used to be; and there’s nothing like a space to get you thinking.
The last decade or so of chronic illness had already pruned my tree of many surplus or sickly branches since you very quickly realise who your real friends are, or which only drain you more, under such circumstances. I have learned to approach all these kinds of change-around pragmatically, trusting that friendships serve the time they are “of”, a synchronistic meeting of souls at a crossroads before moving on along our own most unique and compelling path.
And yes, it would be a harder path without my husband but he is the best friend I ever had so we are very close in all the ways you expect from a friend.
But is there another reason why I seem to lack friends in the physical (not internet) sense? A reason why the last decades are like a graveyard of crashed and withered relationships? Often, they ended badly; a misunderstanding that left me flummoxed as to how it arose but maybe it was just that I took my eye off the ball, failed to keep doing all the work it seemed to take to maintain the status quo where I met them with what they expected of me. Because, when I look back, I notice most of these relationships were left wanting and me somehow drained by all the effort that, at one time, kept them going. I notice how, for all the apparent intimacy, they never really knew me…these people that I once spent so much time hanging out with. Not the real, authentic, cerebral, quirky, intensely focused me that I am to myself. “Just be yourself” they tell you; but have you ever tried that when you are far more complex than the other person? It seldom goes well, in my experience.
So, in terms of friendships, I find myself standing bizarrely isolated in the middle of my life yet why doesn’t that, really, surprise me? Because it coincides with the year when I finally realised, not such a “shock horror” after all, that I am on the autism spectrum and that I have never really been like anyone else I know; that it has always been a long hard slog to keep in the same lanes as everyone else where social behaviours are concerned and that, for me, it really takes so much effort. Not because everyone else’s way is so right (or even wrong) but because they don’t know any different and I am wired quite contrary to them in my fundamental operating system. Put in those terms, life has been a quite exhausting and relentless effort to meet everyone else where they are at and, above all, to appear “normal”. Finding this out so late comes as both a relief and a source of indignation; so many years swimming against the tide, thinking you are at fault in some way.
Then, of course, I had that marvellous initiative a while back (written about in my earlier post Power time for introverts) to set-up a Meet-up group using introversion and highly sensitive traits as the theme. On “paper”, that has been a roaring success with a steady pool of around 50 people coming and going, joining in backroom chats about future events and things in common, people saying they plan to come along, signing up… The downside is that hardly anyone seems to show the commitment to actually turn up!
The first event was a relative success with a comfortably sized group (though some that most enthusiastically said they would didn’t show and were never heard of again). Everyone there said they enjoyed it and more such events were looked forward to…Then, by meet-up number two, numbers had begun to dwindle, members were unresponsive to messages, people dropped out at the eleventh hour, my life as organiser became more complex, I found myself spending more time fielding questions such as “who is still coming, are we still meeting, do we postpone?” than actually being at a social event. With two cancellations behind me and another likely in the coming week, my enthusiasm to keep it going is dwindling day-by-day since the costs of keeping the Meet-up site versus actual life-enhancement is really poor. Plus, to be honest, I have other misgivings…
Because, when we got together it became quickly obvious that introversion wasn’t going to be enough for me to quickly find my tribe, Most, if not all, these women are neurotypical as well as introverted…so they still don’t engage in a social setting like me. Rather, they get straight into the kind of behaviours that feel bewildering and over-complicated, subtly cliquey and competitive (how do they do that so quickly?), or under-run with rivulets of invisible subplot beneath the actual words. Subtle gestures I don’t know how to read and that rather pointless and disarming dance that women do with each other that I never seemed to learn (sorry but its true) fell into place between these total strangers, before my very eyes and I was back in a familiar place of old, like being back in the workplace, at a training course or a postnatal meetup. I was left feeling lost as to when or how to join in with good timing, worrying about why I seem to be the invisible one in a group chat of, say, three women when the other two are making constant eye contact, pinging back and forth, and me left waiting, rather hopelessly, to interject the relevant point I have on the tip of my tongue. How does that happen, is it me missing a cue or them picking up something about me that closes their ranks?
When I did pipe up, I was left feeling as though I had been inappropriate in some unfathomable way; did I share too much, was my story too long, too personal, too blunt or intense, my topic too “oddball”? Do they get my dry humour or sardonic wit or, oh no, did they take that comment too seriously as they all look a little taken aback? Did I not play conversation “tennis” well enough, knowing when to pass the ball back over the net so the other person can have another hit? Did my gaze wander off to stare at a flower on the table display and the thread of the conversation drift over my head while I took in all the small details of its petals? Did I often look perplexed at the conversation (I know I tend to show my thought processes through the window of my facial expressions) or did I not react with enough enthusiasm to those topics that have other women tinkling with reactions like little bells (I’ve never learned this)? Did I look too stoic when I mentioned my long running health challenges (one woman pointedly questioned my claim to fibromyalgia with “well, it doesn’t look like there’s anything wrong with you?” and everyone nodded) and did that seeming jibe unsure-footed me for longer than it should, getting under my belt and muting me even further? Again, same reaction, when I explained I hadn’t “worked” for years. Then, non-verbal clues are my weak spot, in typical Aspie way, and so it is often the end result of missing these cues, such as changes in tone, subtle facial expressions used to convey boredom, nervous laughter, glances flicking from one person to another, a sudden change of topic etc. that I am left trying to analyse after the moment has gone subtly wrong in ways I can hardly fathom; my reactions too slow to keep up.
As I watched notepads coming out and phone numbers being exchanged by those women who were still there at the end yet no one hailed out to me, I decided not to hang back but went straight to my car. I don’t like talking on the telephone anyway so I would never pick up. But the way it happened was all too reminiscent of the “old days” and as exclusion behaviours trigger some of my most potent episodes of low confidence and self doubt, it’s not what I need. Such episodes make me hyper vigilant thus even more prone to misinterpreting innocent motivations. These pitfalls are the very reason why I wanted to create a group that was geared at attracting sensitive types; those who would hopefully “get” all of this and be authentic and minutely sensitive to the feelings of others (everyone who has joined has read my spiel on this topic). Perhaps, as a result of my filter, these people are more sensitive than most; but my approach to relationships is way more raw, daring, straightforward, honest and authentic; I don’t like having to learn a dance routine, I jump straight in.
Because, with me, what you see is what you get, I dive straight into the important stuff and say it like it is. Ask me how I am and I will tell you (and I expect the same from you). I don’t want to temper it beneath what is more socially acceptable to say, or to have to pretend, for common courtesy, that I know less than I do (have you noticed how people do that, rationing their own intelligence in order to act surprised when someone tells them what they already knew?). I want to ask you how your long running research project called “life” is going and pool data, compare results. One of the trickiest tripwires is that I suspect I am very easily misunderstood, when interpreted using neurotypical methods, whereas this is not where my behaviours come from at all; they are far more straightforward and well-meaning but are open to being misread or mistrusted as too blunt, open or painfully honest. I suspect, people look for motivations from me that aren’t actually there since there is no malice in a single word I say; I just don’t dress up the truth. I used to try really hard and I got pretty good at being like everyone else…but, after all these years home-alone, I’m far too out of practice to be bothered anymore, I simply demand to be me. Like most Aspie’s I find social interaction exhausting because of all the extra work I have to do to read social cues so this has not been a good mix with the pain and chronic fatigue of fibromyalgia. Meeting new people, that I have not yet learned to read, is extra exhausting and has to be worth it in ways that are rewarding for me, otherwise why bother. I also struggle to follow more than one conversation, especially in noisy and overstimulating places and, I guess, I had expected the conversation to be more cohesive, not split into overlapping micro-groups so quickly, with me fallen down some sort of crack in between them.
Are there similarities between introverts, Highly Sensitive People (HSPs) and those on the spectrum? Do we all know what it feels like to be different to the majority and to feel like we “have to” alter our innate behaviours in order to fit in or do well in life? As that extremely rare INFJ version of an introvert, a very highly sensitive HSP, someone with a chronic yet invisible health condition that people fail to understand or take seriously and (now I realise) someone on the spectrum, I’ve spent a whole lifetime of working so hard to fit in and can say yes, there is a link.
Yes, introverts have a great deal in common with those on the spectrum, not least that they are a minority and the world around them has been created by, and for the benefit of, those with the opposite trait. People that are highly sensitive also share experiences in common in that they know what it feels like to be on the receiving end of insensitivities and sensory bombardment that affect them far more than other people. Both subsets have had to learn how to act more like other people than they really are in order to fit in. However….and its a big however…neither of these subsets are wired the way someone who is high functioning autistic is wired (unless they are on the spectrum too); and that’s a fact. There is a demonstrable difference in the way Aspie’s think, process information and respond to social behaviours compared to those who are neurotypical, which takes us far from the shores of “feeling uncomfortable” and having to work harder than other people as a minority group into the realms of actually speaking at cross purposes or even a completely different language to other people, being routinely misinterpreted and even disadvantaged and prejudiced against in many a social setting. Seems, in hindsight, I should have set up a group for Aspie’s rather than “just” introverts; but, at the time, I was at the very earliest stages of my diagnosis and it was still all so new to me…the last couple of months have been such a learning curve, getting to understand myself at last.
The unbridled way I express myself, the lack of filter, the openness and detail I use in everyday conversation to “dive in” to the recesses of thought scares people away, I’m all too aware by the age of 51 (even before I had a reason for it). Yet, after what I’ve been through over the years, including the apparently wasteful change-over of many key friendships that I had initially thought were “for life” and, in particular, the last decade and a half in the solitary confinement of fibromyalgia, I really can’t be bothered with anything else but my way. This is what its come to. I’m not braving it “out there” again just to make flimsy friendships in order to talk about the weather or play subtle one-upmanship games built on the need to swop impressive stories about ourselves and go home feeling somehow vindicated for our life choices; I want to keep sifting through life to evolve it and play with it all. I realise, maybe this is a reason for a trend that my close friends’ husbands and partners used to feel so uneasy about me; I used to send my friends home deeply thinking and questioning things in a way that rocked their status quo! I know it is possible to be like this since its what I already I do with my internet friends; friendships I’ve made over thousands of miles and yet we can talk about the kind of nitty-gritty that makes us feel like we are soul mates…connections which give me hope and reassurance that my friendship can be deeply valued and enjoyed by other people. But in “real life”, social behaviours seem to take precedent over consciousness (surely, the wrong way around) and I get lost underneath all the trappings.
The internet has brought its own problems for me. Blogs are my main outlet for those urges that most people feed into their chitter-chatter with others. They have been the pressure release valve over the last few years for that part of me that is not content with self-containment but must “out” to someone, somewhere. The problem is, I have no idea (most of the time) if anyone is even listening. I could be talking to myself for all I know. Last week’s offerings were getting around 60 views per post in a steadily sky-rocketing skyscraper of engagement on the day of release; only there was very little conversation to be had. My usual core of reliable followers (about 3 people) “like” and take the time to comment and engage but most people pass through on the softly treading feet of a tongue-less hoard. I like to tell myself its because they are the quiet types…and that they are gaining some sort of benefit from my personal ramblings, even though they fail to summon the nerve to let me know about it. I may may never get to know who, or how many, people I have impacted in a positive way and this saddens that part of me that seeks “relationship” on my own terms since to blog is my side of the dialogue; and those silences feel like more of the same rebuff I receive face to face.
Maybe I make people just as uncomfortable with my writing as I do face to face and I suspect I come across as “just too much” for many people to cope with when I spill the beans from inside my head. I certainly know that my writen posts come with the same pitfalls as my conversations: too long, too deep, too convoluted but that’s the way I am wired. Somewhere in there, pearls can be found but you have to be prepared to dive in with me. I met a woman in a park, whilst walking my dog, just a few months ago…we were both standing there in the almost dark, enjoying the pattern of clouds and the birds coming into roost. Something had called her to come out for that walk and she told me she felt it was timely as we had the most astonishingly deep conversation, finding so much in to talk about that we took root in the ground. We couldn’t believe we lived so close and had so much quirky stuff in common, hoping to meet up again and I felt that skip of hope that I had found someone I could, at last, meet in the flesh for the occasional walk or a coffee, near to my home. However, when I sent her the links to my blogs and art website that she had requested, and reiterated how much I had enjoyed our chat, I was met with a stoney silence. Though she accepted my “friend request” on Facebook, that emptiest of empty gestures that is so prevalent in the world where real-meaningful friendships used to be, I never heard from her again. Yes, even though the email I sent called for, at least, an acknowledgement. Stone walling is one of the most awful feelings, I have always found.
The internet can be a great way of meeting others but is the internet basis of this Meet-up group I have formed its very weak spot? After all, I struggle as much with social cues online as I do in person. Often, the neurotypical way of opening a conversation with a stranger is to sound gushingly enthusiastic to start with, adopting the tone of warm and approachable old friends…to a point. I frequently get messages like that from people that join the group or, when they complete the group questionnaire, the personal details that they share often seem to warrant acknowledgment from me as organiser. However, some of those I have then tried to engage in further dialogue, because they seemed so open to develop a conversation when they first made contact with me, have recoiled when I’ve reciprocated by opened up some of my own background, as though I have overstepped some sort of social marker in the sand. As ever, I remain bewildered and rather weary of making the effort.
Where does that leave me in a year when unpacking the gifts of neurodiversity is probably the best thing that has happened so far; possibly in the whole of my life? I love owning this thing about myself with an absolute passion; a passion I share for all the “typical a-typical traits” of someone with Asperger’s…since they are so instantly recognisable to me, and they are just so relatable, endearing (not least because of the pain and misunderstanding they so-often lead to) and often quite awesome in their usefulness and contribution to a world that seems to be missing some of these important qualities. We could really use some of these traits “out there” in the mix, a topic I will come back to shortly because it’s such a pressing area for study (over all those efforts that are, currently, being made to eradicate autism as though it is a disease).
Many neurotypical relationships strike me as pointless, facile, insincere, manipulative, fake, underhand, overly-complex, self-interested, shallow and often plain nasty. I have been subjected to these social norms for the whole of my life, in school and in my work life, in the various jobs that cranked the handle tighter and tighter to the point the rope finally snapped at the beginning of my health crisis. Reading how those with Asperger’s do not have a good time in the workplace is such a comfort to me (odd though that may sound); since, in that respect at least, I am very typical of at least one group of people.
The book I have just finished reading, entitled “Asperger’s on the Inside” because it is about how its author Michelle Vines became so good at keeping it inside and out of sight, struggling and confusing herself (like me) as she worked so hard at playing the game of being neurotypical for years prior to diagnosis, is a revelation and a joy that I poured over with more relish than anything I have read for a while. Last night, I read the final pages beneath the covers as my husband slept, which actually saddened me since it has been like finding a close friend, so similar are her perspectives to mine. I’m quite astonished, though perhaps I shouldn’t be, at how many twists and turns in her story are the exact same as so many of mine, though we grew up on opposite sides of the world. I would like to think that what I write could be of equal comfort and use to others even vaguely like me, as her book has been to me, since it can be more important than ever to realise you are not alone in your experiences when you are in this kind of social minority group and open to constant misinterpretation.
The positive qualities of the neurodiverse way of interacting with other people are laid out in all their glory in this autobiographical account…and are pretty plain to see in her own character through all of life’s challenges. These real-life anecdotes are the quality that made this book stand out for me against all the rather sterile textbooks you can pick up on the topic. Like the author, I had danced around the possibility of Asperger’s for years, shoving it to one side for another half-decade after reading the “official” description in a library book I picked once up (it sounded far too extreme to be me) but, when you get to know Asperger’s in action, within the life of a high functioning female with a good degree in chemistry and an accomplished career behind her (until work became too much for her to handle due to the inherent social pressures), you can start to pick up all the clues in those aspects of your own life that have been the mysteries and hardships, often beneath the surface of “coping”.
We’re not so socially inept as they like to paint us, either…and most of us have a great sense of humour (for me, being quite “the comedian” in my homelife is a defining trait), its just not necessarily the same humour as neurotypicals. Above all, we are direct, which has a lot to be said for it in a social setting. As Michelle Vines points out, as someone who has now taken part in, and organised, several Aspie meet-up groups where she now lives in the States:
“Interestingly, when you put a group of Aspie’s together – in my view anyway – we don’t view each other as selfish at all.We communicate directly and tell each other what we want. There’s no gap between how we’re expected to behave and how we understand the expectations. It makes me pose the question, is the problem really caused by Aspie’s or is it really an error in communication? Namely a failure of neurotypical people to communicate with us in a manner we find acceptable…Maybe we’re just hitting a brick wall at the interface.” (Asperger’s on the Inside – Michelle Vines.)
Directness and openness, yes, this is what I crave…and its what I most recently had as a university student, living and mingling with some fairly diverse people. For the same reason, I always tended to hang out with quite a few guys and my daughter is the same, though this is often open to misinterpretation from neurotypicals. By the time I had been in the workplace for a couple of years, I was actively wary of other women. So maybe I should have set up a Meetup for the men…Yet, I don’t fully hold with the extreme-male-brain theory of autism (more on that below) but, rather, tend towards the thought that neurotypical females are more easily entrained to adopt socially acceptable “female traits”, as created and defined by certain cultural expectations, and those on the spectrum are not. By the time we reach adulthood, gender differences are thus miles apart amongst neurotypicals but not so amongst those with Asperger’s. So I wonder, is that really due to the fact we are not so easily entrained to social expectations plus we insist on continung in our “male” pursuits, such as an interest in science etc., regardless of any social pressures to do otherwise because an area of hyper focus is something an Aspie will stick to like glue. I’ve always had a massive self-propelled lay interest in cutting edge science, even though I chose not to study it beyond school but this doesn’t make good coffee shop conversation so where do you go with the urge to make conversation on these interests? And how do you turn your attention, instead, to cooking, holidays, careers and raising kids as likely topics when these are the universal expectation?
One more quote for the mix, this time from Tony Atwood, a clinical psychologist known as an expert on Asperger’s:
“People don’t suffer from Asperger’s Syndrome. They suffer from other people”.
Yet the dominant trait of the therapeutic approach to autism is still to set out to “correct” it; to stamp it out and heal it. The other night, I watched the remarkable must-watch documentary (still available on YouTube) in which British TV presenter Chris Packham, who has Asperger’s, talks frankly about his life and I was quite riveted. On his quest to understand the topic more, from all angles, he went to the US to explore the favoured approach, which is a kind-of full emersion “adverse therapy” whereby kids on the spectrum are schooled in massive institutions where they are subjected, day after day, to the kind of noisy, overstimulating, authoritarian, insistent and relentless behaviours that neurotypicals are expected to cope with, including close personal contact and the kind of overstimulation from noise and chaos that those with sensory-processing difficulties must find near unbearable. In other words, they are thrown into the deep end of the worst kind of neurotypical environment and hot-housed until they relent and behave more normally.
These places hold up in justification a small percentage of kids who walk away with their diagnosis newly shed, now “normalised” in order to better fit-in with a neurotypical lifestyle and yet at what cost to them and all the others being put through the system (not to mention what an oversight this is, giving no attention or curiosity to all the inherent gifts of the unique way these kids are wired). This approach is a million miles away from the approach of Oliver Sacks, British neurologist, who famously studied his autistic subjects of his book An Anthropologist on Mars
“from the point of view of the compassionate clinician, embodying the tradition of astute observers like Jean-Martin Charcot, the founder of modern neurology, and Alexandra Luria, who wrote case histories of his patients so full of insight into the human condition that they read like novels.” (NeuroTribes: The Legacy of Autism and the Future of Neurodiversity ” – Steve Silberman.)
You can’t help getting the impression that those who “improve” under the favoured therapy have simply waved their white flag in surrender in order to “get out of” that living hell. Chris Packham’s extreme distress at witnessing this therapy program in action is quite obvious in the video and I could hardly bear to watch from a distance.
Looking back at my health crash fifteen years ago, at which point I left work “forever” because I knew I could never go back, that was me waving my white flag of surrender at a world that was far too overstimulating, like a long-running party in a madhouse. At the time, I was doing one of those mega high-pressure and quite meaningless jobs in a small cubicle in an open-plan office surrounded by the endless cacophony of raised voices and ringing telephones, beneath flickering fluorescent lights next to windows that were sealed shut (and every job I ever had challenged me in at least some of these ways). I could barely think for myself in such an environment and it was very far from the kind in which I could be expected to perform my best. In that job, I made some key friendships that, at first, seemed likely to “see me through” my days in that lunatic space and even some of my time out of it but, over time, their shallowness and temporary nature (being work specific thus holding no real substance) revealed all too clearly and I was, also, moved away from the makeshift camaraderie of the team I began with into a quite different team of people from whom I sensed no good feelings or desire to engage. From then on, I was left with nothing to focus on but the heinous nature of the work and its environment; not even the banter or curiosity of a friendly face to break up that intensity.
Looking back, if only I could have been supported in working as I work best, in flexible hours and places, not nine-to-five or given tasks that were way off the scope of my skillset (this occurred in every job, sooner or later) perhaps I could have kept working for many more years, making a contribution. Instead, I left conventional work before I was 40 and have cobbled together an existence as an artist ever since. Michelle Vines had exactly the same experience, giving up on work after her first few attempts since her experiences all shared so many traits in common, across a variety of different jobs; that thing being that she was expected to act like a neurotypical person and so was I.
So, even in my last huge office space, surrounded by people, I felt alone in a crowd and it was a desperate situation, day after day. Feeling alone in a crowd has, in many ways, been the story of my life…following me through my school days, my earliest jobs, even my first marriage and the associated friendships of those years. Nobody really knew me and the only way to get by was to pretend to be what I wasn’t…time and time again, day after day. The nearest I ever came to fitting in (as I mentioned above) was at university, amongst a tribe of similar oddballs amongst whom, on looking back, I sense I had found myself more than a couple of neurodiverse “types”. Glancing at where they are now, what has happened to them since, I remain fairly confident these were the closest match I ever made in that sense but distance has drifted us apart from the old intimacies we once enjoyed.
The thing is, now, I won’t compromise. Having owned who I am, how I operate and what the inherent gifts are, I will not go back to pretending I am other than how I am and that is that. Take me as you find me or not at all; and for heavens sake don’t expect me to pretend to be typical in areas where I am not. The plus side is (though I hate to generalise), Aspie’s tend to be very comfortable in our own company; in fact it’s often a prerequisite for a happy, healthy life. For every day or two I spend in company, I like to have a handful more on my own and that is a base requirement of my life or I feel like I will melt down from the effort of trying so hard and also being away from what really interests me. We are also prone to hyper focus on those topics and activities that really engage us and when we are in one of those hyper focused moods, we REALLY demand to be left alone. Interruptions to our thought processes, when we are “in” there, are really not welcome and, in my case, go one stage further and can cause me to cascade into actual sensory overwhelm and then some very real physical pain symptoms. I guess it is my body’s way of saying “urgent urgent…clear yourself a space…get back to your inner sanctum!”
This, of course, made parenting one of the most challenging and alien things I ever tackled, along with one of the most rewarding. Now I am through the child-rearing years, I can say with a sigh that it was all worth it and I am glad I went through it, not to mention pleased at the outcome. However, at the time, when the constant mess and the relentless interruptions to hyper-focused moments (by which I mean moments that lasted for hours, days, weeks as I plunged the depths of some new-favourite topic…typically lost down the rabbit hole of metaphysics, spirituality, new science, art experimentation etc) I often wondered if parenting had been an almighty mistake. The mix often wasn’t a comfortable one and I did my best with what I had…braced for the daily interruption of everything I had spinning when the family got home, then struggling to get back to that train of thought whenever I was alone again.
At the time, I had no idea about my autism and so I tended to self-blame, to think all the worst thoughts about myself, to wonder “what’s wrong with me?” and where my heart was, why I couldn’t be a normal parent, happy to drop everything and engage with the inane and the childish at the demands of another little person. There were, thankfully, immense upsides when I was able to parent at my daughter’s level, meeting her without all the pomposity and jumped-up authority of the typical parenting stance but, rather get down to her level to where we developed an intimacy that still holds us very strongly and closely together. Often, the way we solved problems felt like we dismantled a situation together and figured it out from the bottom upwards, without all the usual rules, suppositions and fake stances of adults supposedly “knowing better” than the child. In a sense, we both grew our understanding of the world on the back of this approach, especially as we figured out social situations that confounded me as well as her. I am still her “go to” with every deepest emotional or other intimate problem and she credits me with helping her in ways she struggles to express; knowing all too well that I am not a typical parent in any sense and yet she tells me she is so grateful for this. Yet I won’t pretend that it wasn’t hard; perhaps, more challenging than for a neurotypical parent that can take a more text-book approach and not lose so much sleep over it all in the night.
So, the decision to parent as an Aspie is an intensely personal one but is all the better for being pre-informed; but how, if you didn’t realise at the time you decided to get pregnant? How could you make that informed decision if you were still assuming you were like everyone else, if a little eccentric, and that you wouldn’t feel so much pain and self-doubt over it all for years to come; that perhaps your reservations were more than just the normal butterflies at new responsibilities? How could you know that, without being able to draw on the compatriotship of the other parent friends down the end of a telephone line or popping in for tea (friends that you naively believed you would “inevitably” gather along the way) you would feel so alone in the process? By the way, the territory of trying to join in and take something out of those initial “parent and toddler” groups was one of the most rebuffing and hurtful experiences of my life and it is only on reading about identical situations in Michelle Vine’s book that I am able to identify the closed-rank behaviour of most adult females when you are the unwelcome oddball in these kinds of settings; and make the direct link to my Asperger’s as the primary “reason”.
Yet I knew nothing of my Asperger’s at that time and I gather a large number of people are only reaching this diagnostic state, via their own research or a coincidental piece of information hitting them in the face, as they approach their middle years (probably well into or after the child rearing years)…and the vast majority of those people, who went through the whole of their previous life without knowing this about themselves, seem to be women!
Why do women fall through the diagnostic net so readily? There are all sorts of theories, including the fact that the old mindset was that autism was typically a male “affliction” and so girls tended to be left out the studies but, to me, the most plausible is that we are just so good at adapting. We watch and learn neurotypical behaviours, from a very early age, and we quickly assimilate them in order to survive (girls do this anyway, with or without autism…only, neurodiverse types make a mastery of it, not least because their survival as a female depends on it since other girls can be so vicious towards anyone who is “different”).
Early bullying experiences at my first school necessitated that I pay very close attention to the “normal” social interactions of other kids, especially the other females who could be so nasty, and that I became more typical seeming in order to fit in. I can even remember setting myself the task of practicing these incomprehensible “typical” behaviours, although I also clearly remember the sick-to-the-stomach feeling of the day I practiced the worse of them (I tried to join in some unpleasantness aimed at another girl) and knowing I couldn’t go over the line into spiteful behaviour again; not for anybody. But by picking up the bulk of those normal behaviours, or the impression of “doing” them, and learning the complicated dance that other girls did, engaging minimally but enough in the endless trade-off of favours, fake compliments and pretence, adhering to hierarchies, pecking orders and herd-based allocations of popularity, etc., I learned to get by.
By the time I was around 10, I can tell there was an upshift in my ability to do this with great aplomb and so things got easier from there. Then, at secondary school, and in the same way as is described by Michelle Vine in her book, I met a small group of other oddballs and we stuck to each other like glue; mainly three of us but I did far better when it became just me and my one particular friend most of the time, from about the age of 13. From then on, it was as though the rest of the kids at that massive school were mere wallpaper, a sort of fuzzy blur in the background and I just got on with what engaged my friend and I and with my work, becoming typically “geeky”. My time at home, alone in my room pursuing my interests, or outdoors surrounded by nature, were the most precious but being with my “best” friend made it more bearable during those years and tided me over when I needed it most.
Then, as I said, I found my tribe at university and all went swimmingly until the world of work came along like a sledgehammer. From day one, it was an emotional disaster, however much I managed to pull off the impression of coping, even of doing well and of using some of my quirkier gifts to good effect, as I did in one of my jobs where they became such an asset to the fledgling business that benefited from my hyper focus, attention to detail and creatively system-minded approach (this was in the first days of computers and no one had a clue but I self-taught myself then used this to devise all kinds of useful workflows). The biggest challenges came when employers expected me to step up to managerial “people handling” roles or to deal with the outside world, to pacify and schmooze with our most entitled “prestige” clients at social events, or fob then off with half-truths to get out of a situation, and particularly cold selling to anyone. Then I was a lost cause and it would, quite literally, make we feel ill. The whole culture of it all (which I found versions of in every single job) seemed to turn my stomach to acid and cause my nervous system to collapse in a heap of exhaustion.
All that is food for another post entirely but, back here, I am left with the conclusion that I just have to keep on doing what I am doing, take the passing yet mostly surface-deep social gifts when they come along and remain content in my own company…rather than make do with what feels fake, exhausting and facile. I’m fortunate enough to not have to work “out there” anymore and I count my blessings every single day for that.
Whether I keep going with my Meet-up group, I’m really not sure yet but the other aspect I’m not comfortable with about this approach is the need to preplan an event so far in advance, not knowing how capable of socialising I will be on that particular day. If I’m in a hyper focus frame of mind or feeling unwell, for instance, my social skills will be next to non-existent on such a day and this lack of flexibility is not “a fit” with my type. We cant just “fake it till we make it” and I’m left with no solution for this particular hurdle since I am the group organiser.
What I really wanted to gain out of it was maybe one or two close friendships that meet me “where I am”; not to have to herd a dozen cats to a venue on a particular day and guarantee that it will be a roaring success. Also, the size of the group makes the likelihood of meeting someone else like me much too random. It occurs to me that an Aspie needs to look out for other Aspie’s and, to do that, they need to be prepared to own the trait in themselves, face on, before making it the very objective of the friendship search rather than a subplot. Instead I seem to have plunged straight back into a neurotypical pool.
Would I dare to announce to the group that I have Asperger’s in case there are others in there, or to better introduce myself and avoid misunderstandings? Based on cautionary advice that I’ve read everywhere, I gather it could go badly, even amongst nice seeming and rational folk, yet I now feel like I am running the group at cross-purposes if I don’t lay this on the table. As I’ve discovered lately, its a very Aspie trait of mine to be such an open book about myself, trusting that people will just accept me or welcome my honestly, receiving it with compassion and understanding. I’m certainly not alone amongst Aspie’s in having nurtured this naive expectation for most of my life (to my own detriment, many times over) and anecdotes from Michelle Vine’s own story and others on forums suggest that “people judging and dismissing them” and harsh and even quite bizarre treatment is very typical when this particular topic is brought out into the open in a social setting, even if it only happens behind your back, such are the heavily stigmatised ideas around it. From the book, when Michelle Vines asked around amongst other Aspies:
“People wrote that the second you mention “Asperger’s”, the neurotypical people put you in a “mental” category and really don’t ant to hang out with you. Many are not interested in understanding. They don’t want to put in the work”. (Asperger’s on the Inside – Michelle Vines.)
My husband thinks that if I tell people I have Asperger’s they will assume I am a weird internet hacker type, if I say I am autistic they will assume I am handicapped in some way and far too high-maintenance to befriend and if I mention High Functioning they will jump to the conclusion I am the same as a High Functioning Alcoholic and want nothing to do with me. Even if he was being a little flippant, he has a point, from what I am reading. So, for now, I remain on the fence about opening up but the group feels off-track while I pretend to be the same as most of them when I’m not, especially if this means I continue to struggle with group interactions or be taken wrongly for my inbuilt behaviours (which, as organiser, are hard to keep under wraps). This leaves too much scope for me to fall back into blaming myself for social gatherings not going as well as I hoped, as I used to always do, time and time again…the post-mortem process becoming my morning after obsession when, really, it was nobody’s direct fault and certainly not mine. To quote Michelle Vines yet again:
“Imagine going through life repeatedly at odds with people and never understanding where others’ negative reactions are coming from. Imagine all the horrible assumptions you might make about yourself in response to that”. (Asperger’s on the Inside – Michelle Vines.)
If this group makes it through to Christmas, I will be amazed. So, have I thought about starting an Aspie group or joining in with one? There seem to be none in my area and I’m really not sure I’m ready to go through this “organiser” process again quite so soon. I’m really not sure yet what my next step is; I just know I am done with bending myself into a pretzel to be more neurotypical than I am!
Really, there is no conclusion here but I wanted to air the topic for any others (hello…are you out there?) who feel somewhat the same. That the gifts of autism are undeniable is the clearest bell ringing on my hillside right now and my intention, for the foreseeable future, is to plunge the treasure box of it to see what other positives I can bring up to the surface. It occurs to me that we (those with Asperger’s), and the world at large, need a lot more positivity around autism…to generate a real feel-good factor and air of celebration around it to get this topic opened up; and the best people to stir this up are those with it, especially those with a bent for communication and exploring new areas of thought.
With that in mind, I’ve just started reading “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”, having seen its author Steve Silberman interviewed in the Chris Packham documentary. When told by Chris that one of the establishment therapists he had just been to see, interviewed on camera, wanted to see autism eradicated, to “cure” and “rid the world of it”, he shakes his head in belief and says “Wow, that’s horrifying”. As he points out, silicon valley is made on the back of neurodiversity; companies such as Google, Yahoo!, Apple, even NASA would have got precisely nowhere without those people that so many people still consider to be weirdos and Microsoft now has an employment initiative to encourage people on the spectrum in; operating a five-day long super-relaxed interview process to allow them to unpack what they have to show about themselves in their own way and time, without expectations and pressure. Once in, they allow these uber creative individuals to work as they are best suited, be that in an open-plan space full of scribbled notes stuck to magnet boards or in their own room with the door closed. If only my employers had been so flexible…
There are some people, and I am in there, who consider the neurodiverse brain to be an evolutionary prototype; perhaps a leap from the neurotypical into the future and, yes, with a few wiring foibles yet to be ironed out (though how many of those would exist if those on the spectrum didn’t have to expend all their energies, from birth, trying to conform to the typical and deal with being told they are faulty?). To quote one of the commenters from Michelle Vines Facebook conversation as background to her book:
“We can’t change that we are different, and the angst comes from wanting to, wanting to be like them…the day you let go of that, you’ll find the world is a BEAUTIFUL place for you…and you can celebrate being different, as you should.”
References, Resources and More Thoughts on “What Next?” for Neurodiversity:
Asperger’s on the Inside (2016) was written by Michelle Vines, an Australian with a degree in Chemical Engineering and Science…and Asperger’s. In this short video Asperger’s on the Inside – Book Trailer, Michelle briefly outlines her objective with the book but I would really just encourage you to dive in and read it, especially if you are on your own Asperger’s discovery journey, as its been one of the most useful and relatable things I’ve read so far. It’s a million miles away from some of the more academic approaches that can leave you wondering “is this really me they’re describing?” and is a warmly accessible, anecdotal, approach to the topic. Michelle now advocates for those on the spectrum and her website can be found at www.michellevines.com.
Steve Siberman’s NeuroTribes: The Legacy of Autism and the Future of Neurodiversity was awarded the Samual Johnson Prize in 2015 and has garnered some great responses. Taken straight from Wikipedia
“In The New York Times Book Review, Jennifer Senior wrote that the book was “beautifully told, humanising, important”; called it “as emotionally resonant as any [book] this year”; and in Science, the cognitive neuroscientist Francesca Happé wrote, “It is a beautifully written and thoughtfully crafted book, a historical tour of autism, richly populated with fascinating and engaging characters, and a rallying call to respect difference.” It was named one of the best books of 2015 by The New York Times, The Economist and the Financial Times”.
Also useful and interesting: Rachel Cohen-Rottenburg’s critique (one feels her given name may be a parody…) of Simon Baron-Cohen’s Extreme Male Brain Theory of Autism (1999) in which he posits a dichotomy between the empathising female brain and the systematising male brain. In his view, autistic people have extreme versions of the systematising male brain and his gender based theorising has, in some people’s view, made it even more likely that well-adapted (to neurotypical behaviour…) high functioning autistic females continue to remain undiagnosed, even to themselves.
The critique states:
“Nowhere does he mention our sensory sensitivities, our unusual communicative or cognitive abilities, our capacity for rational thought, our empathy, our gifts, the love we feel for others, or any other process that goes on in the human mind and heart. To see autistic people only by external markers shows a significant lack of empathy in every sense of the word.” (A Critique of the Extreme-Male-Brain Theory of Autism.)
In other words, sensitive, empathic types and those with “female” or right-brained qualities in general…yes, women themselves…are being alienated from the accepted diagnostic criteria by the male-brain stereotype of the over-logical, predominantly scientific or mathematical, obsessive-compulsive, humourless and socially inept geek that has been conveyed far too many times as the typical Aspie across various media. In Michelle Vine’s words, “sometimes I think of myself as part of a lost generation (or generations), the ones who had to go through life with Asperger’s unknowingly”.
The critique concludes:
“In my opinion, most autism “experts” fail to understand autism. The academics and scientists who study us, observe us, test us, and wring their hands over us are neurotypical. Therefore, they cannot intuitively understand our internal processes and experiences. The best of them listen and learn. The worst of them publish incorrect—and damaging—conclusions.
For my own part, I’ve gotten the best information from other autistic people. We are the true experts on autism. Just as even the most sensitive man cannot be an expert on what it’s like to be a woman, so even the most sensitive neurotypical person cannot be an expert on what it’s like to be autistic. It’s simple neurology. It can’t be done. (A Critique of the Extreme-Male-Brain Theory of Autism).
Siberman echoes this with the words:
“The idea of neurodiversity has inspired the creation of a rapidly growing civil rights movement based on the simple idea that the most astute interpreters of autist behaviour are autistic people themselves rather than their parents or doctors”.
A review of the “official” routes to diagnosis and support make depressing reading, as do the current UK opportunities to meet up with others that have been self or formally diagnosed (descriptions of typical activities aren’t exactly encouraging for someone without learning disabilities). I don’t want to sit in a room and play board games with others on the spectrum, or to be coached on how to get on better with neurotypicals or to function more like them. I simply want to be destigmatised and for more people to dare to be diagnosed so I can find more relatable friends. I want to be able to start conversations about this topic without fear of neurotypicals avoiding me as though it’s contagious. I sense, thankfully, a grassroots movement occurring amongst those on the spectrum, especially those who have worked hard to live “normal” lives and who only realise this missing piece of the jigsaw in later life, following years of pursing careers or bringing up families in the “normal” way. I sense that, like me, they are self-organising, doing their own research, collaborating and informing where they can and, especially women, speaking out about all the positives of what (in my view) is not a failing but an unexplored gift.