Sunday 26 August 2012

Imposter Syndrome, and Getting A Diagnosis

An issue related to autistic shame is what I call ‘Imposter Syndrome’. I can best illustrate what I mean by this by talking about my own life. At a fairly young age, I realised I was ‘not normal’, not like the others around me. I perceived this as a lack of some kind, something others had but I didn’t, an inferiority on my part. I also realised it was something I needed to hide – because when my difference from others was revealed, in whatever way, a whole ton of negativity landed on me. So I definitely got the message, that this ‘not normal’ was not a good thing to be.

So I started to pretend. I watched others, I mimicked them, I modelled myself on them. I devoted a huge amount of my time and energies to learning what ‘normal’ behaviour was, and doing my best to present that to others. I built, in effect, a façade, a front or mask, of ‘normality’. This front was imperfect of course, a lot of negativity still came my way, and so I was forever revamping, reinforcing and refining it. I did this for years, decades even, of my life. I devoted time and energy to it that I now feel could have been better spent on enhancing my life in myriad other ways. And yes, I learnt a lot of what might be termed ‘social skills’ along the way – it was essential in fact, to the construction and maintenance of this front.

But there was a catch – the more polished my ‘mask’ or front became, the more l lived in fear. Fear of being ‘found out’. Fear of having someone ‘spot’ my secret abnormality, and exposing me with a pointed finger and a shout of “You! You’re not normal! What are you doing here amongst us regular people! Get out!!” Or words to that effect. Each occasion I ‘got away with it’, my fear that someday it would happen only increased all the more. I felt like an imposter, a ‘pretend normal person’, a sham, even a monster. It also had a ghastly feedback effect on my secret shame – the more I hid my true self, the more ashamed I felt of what I was hiding, and the more I tried to hide it, and hence the more my shame grew… And if any possibility of ‘exposure’ threatened, however faintly, I would redouble my efforts to hide it, and build that façade even stronger. While behind that front, my fear and shame gnawed away at me, corroding my self-esteem more with each year that passed.

And then I began the journey of realising I have Aspergers. This was a total surprise – I’d never thought that the source of my secret shame and façade had a name, an actual diagnosis. Even more, I had never thought there might be others like me. I thought I was the only one, ever. It was stunning, and very hard to take in at first, but also very welcome. I wasn’t ‘weird’ or ‘abnormal’ after all, I was an aspie!! With the aid of my new friends, the shame and the low self-esteem finally began to shift. I began, cautiously, to reveal that true self I’d hidden for so long.

However, over time a curious problem has developed. As I don’t yet (due to lack of money) have a formal diagnosis, that slip of paper or signed report or letter from some ‘expert’ saying that yes, I definitely do have this condition, my ‘imposter syndrome’ has done this strange 180-degree turn. Maybe, the little voice in the back of my head now whispers, maybe you’re just kidding yourself, because you want so much to fit in somewhere. Maybe you’re just ‘jumping on the latest bandwagon’, diagnosing yourself with the ‘condition de jour’, inventing ‘symptoms’ just so you can belong. Maybe, that voice says, it’s all in your head, and you aren’t really aspie/autistic after all, but just that weird, useless, deficient, sub-standard reject you always thought you were.

This despite having done every online test I can find (often more than once) and having had them all confirm I am well out of the NT range, not to mention several years of research that has confirmed yes, all my ‘quirks’ and ‘abnormalities’ can be explained by this label, the repeated and emphatic confirmations of my peers, and feeling accepted and understood for the first time in my life by those same peers. In spite of all that, still, still, there is this lingering doubt. I believe only that formal diagnosis will rid me of that doubt, this voice in my head like a worm nibbling at the foundations of my new and still precarious self-esteem.

And as if that’s not enough, there’s the irony that, having polished this NT act so well, sometimes when I have tried to tell people I have Aspergers, they refused to believe it. “I’ve seen Asperger kids, and you’re not at all like them!” I had to do a lot of explaining to some of my family, pointing out that I am forty years older than those kids and female anyway, and it manifests differently in females, before they slowly began to accept it. I know this has happened to many others on the spectrum also. It’s as if they see only the exterior, and not what it has cost to construct and maintain that, or what it still costs. They don’t seem to see how I force myself to endure, for example, sensory challenges that bring me close or even into overload; or understand how strange or new situations or people can frighten or overwhelm me. And so on, etc, etc, etc. I’m sure anyone who has ever experienced this ‘imposter syndrome’ will know exactly what I mean.

This is why I believe diagnosis is so important, for us adults on the spectrum. It’s not about being able to get access to services – for the most part, there aren’t any. It’s not about support – again, there mostly isn’t any, apart from what we give each other. It’s about knowing, for the first time in our lives, absolutely and without a doubt, what we are and where we belong. It’s about self-acceptance. It’s about killing that horrible wormy little voice of doubt within, and ridding ourselves, once and forever, of the crushing weight of the ghastly Imposter Syndrome. Being able, finally, to breathe free, walk with confidence, be our true selves, exactly as we are, without apology or concealment.

I live for the day that happens for me.

Monday 13 August 2012

Going Beyond the Shame

A few days ago I wrote about autistic shame. But, I realised, it’s not enough simply to acknowledge that it exists. Where to from there?

As I said in my earlier post, I believe that becoming part of the autistic community – even if it’s only online – is essential to ridding ourselves of shame. When we first join it, no matter how tentatively, we start to read the stories of others on the spectrum, and compare notes - and to realize we are not the only ones who ever did this, felt that, had this or that reaction. We experience being accepted and understood for the first time. Eventually we start to think, hey these people are just like me, and yet they seem pretty okay people, in fact more than okay… Maybe I’m okay too…

Because it’s in this talking with others on the spectrum, that we start uncovering what exactly about our autism/aspergers make us feel most ashamed, and in doing so, to drain those deep wounds, and let them begin to heal. Those wounds may be caused by any number of things. Our executive dysfunction disorder, or our need for absolute order and rigid routine. Our sensory or emotional ‘over-reactions’. Or the social difficulties – our sense of isolation and rejection, how we can’t seem to make or keep friends, or find a decent/any partner. Our difficulties finding, keeping or simply enduring jobs. Or simply that feeling of being ‘not normal’, of being a square peg in a round-holed world, a reject, a lemon on the human production line. Or all of the above. And more, and more. And each time we felt that way, it carved a deeper notch in our souls.

But with the aid of our new contacts and friends, we start to see that what we thought for so long were signs of our hopeless inferiority are in fact simply part of our being autistic/aspergers. Then comes the final step - we begin to stand up for ourselves with the rest of the world. It isn’t necessary or even possible for all of us to be hot-shot political activists. But we can start to set limits with the people in our lives, to explain our reactions, and why we act the way we do, to be ‘self-advocates’, in effect. And when we do, things begin to shift for us. We begin to breathe easier, walk taller, stand prouder. And we can only do this too with the support of other aspies/auties, who form an essential ‘net’ to catch us when we fall, and help us back on our feet again. This is where we save each other’s sanity. Where my sanity was saved. Community makes the essential difference. Without it, we’re simply struggling on all alone - and we already know, all too well, how hard and impossible that can be.

Note, I am not making light of how difficult it can be to make changes in our selves, and our lives. But remember this – you are all incredibly brave just to have come this far. All of you have endured huge hurts, and survived. We continue to daily endure an unaccepting and often hostile world, one which is not set up for us, does not understand us, does not even like us very much, and a large part of which would prefer we didn’t exist. Which bombards us with negative messages, and relentlessly pressures us to be ‘normal’.

But you are not what the world thinks you are, or tells you that you are. You are not a failure or a reject, but an exceptional human being in your own right. You are worthy of being treated well, of treating yourself well, and demanding, expecting, that others will do the same. You are beautiful, and worthy of loving yourself, your true self, just as you are. Arohanui (much love), my friends.

Thursday 9 August 2012

Why We Autistics Hate Change

Another thing I’ve been thinking of a lot lately is how we on the spectrum don’t like change, and why this is so. I’ve heard or read lots of ‘experts’ talk about our ‘rigidity’ in regard to routines, routes, habits, etc. But no-one has ever seemed to ask why we are this way. A clue lies in the theory of ‘weak central coherence’, which, to me, explains why it’s so hard for us to generalise, or to transfer knowledge learnt in one situation to another. Every situation is different, unknown, chaotic, and hence frightening. Generalising and learning from experience are skills that can be learnt, in fact I have taught myself to do them. But they’re not things that come naturally, and must be consciously worked on.

But that’s the ‘experts’, looking at us from the outside in. What does it feel like from the inside out, from the autistic point of view? What exactly is happening, when an autistic child goes into meltdown over a change in routine, eg their mother driving to the library before the supermarket, rather than the reverse, as they usually do; or an autistic adult gets in a muck sweat of anxiety over having to do something new, eg drive to an unfamiliar town?

I can only say what it’s like for me, and as I’m an extremely visual person, I search for an image when trying to explain something. The most persistent image here is one that probably borrows heavily from science fiction movies, it has shades of Avatar, or maybe the Ewok planet from Star Wars.

Imagine a world where the people live in giant trees. The ground is far below, the bases of the trees lost in a swirling, misty darkness, with strange and terrifying creatures half-glimpsed in its depths. To fall from these trees is to fall seemingly forever, into that dangerous abyss. The inhabitants of this world have built platforms for themselves to live on, high in the trees, and move from one tree-home to another by means of rope bridges, some quite big and wide, others more narrow. They can’t of course see very far, but the routes are familiar and well-used, and the inhabitants have little to no anxiety about using them. Their only fear is of falling.

Now imagine another race comes into the area. They look the same as the original inhabitants, with this sole difference - they can fly. And when they want to go from one tree to another, they simply launch themselves off the platforms into space. Come on, the visitors call, let’s go this way! The original people, not unnaturally, balk at this. They know they will fall into the abyss if they try. They stick to their bridges and platforms, their ropes and branches. If the new people try to force them to jump off, they scream in terror, even though the new people are loud in their scorn and impatience. They know it’s impossible.

That’s how it feels to me. The world is a frightening jumble to us, and our familiar places, routes, etc (those platforms and bridges) that form our support, our ‘ground’, are only slowly created out of that chaos. We cannot just ‘walk into empty space’. We need to prepare, to in effect build a new ‘bridge’ to get across that gap. It can be done, but it takes time and (lots of) preparation. The abyss below is the dangerous unknown, and even now, with all the skills I’ve learnt, to think of doing something that might cause me to fall into it causes my heart to beat wildly, my guts to cramp, and my breath to come short. Fear, in other words, is what causes us to resist change. Our rigidity is the result of our fear. Try and force us into new things without that prep, and watch us fall apart, or even go into meltdown. Even if we do it to ourselves as adults, it’s still not a good place to be in. We’re falling into that abyss, and it’s terrifying. Give us ample preparation time however, and/or teach us how to find out what we need to know before going into something new, and it’s my belief you will witness us become much more flexible – because we’re more secure.

Tuesday 7 August 2012

Autistic Shame

I’ve been thinking a lot lately about autistic shame. By ‘shame’, I mean the often life-long burden of feelings we experience as a result of failing to be ‘normal enough’ – that complex and overwhelming mix of embarrassment, self-hatred, fear, hurt, confusion, anxiety, anger and other feelings too convoluted to identify. Over time, and amidst repeated incidents of ‘failing to make the grade’ in one way or another, it slowly builds into a toxic brew that leads us to hide anything and everything about ourselves that might identify us as ‘different’, and invite negative reactions from others. Ultimately, it causes us to feel ashamed of our very selves, our very being, to feel we are somehow warped or defective, and/or ‘lesser than’ the ‘normal’ people around us. This is a private pain which we usually bear unnoticed and unvoiced, but which is hugely - immensely - damaging.

For this shame is toxic. It can kill. Suicides, drug and alcohol addictions, heart attacks, perhaps even cancer, can be the long-term result. It destroys our self-esteem, our relationships, and limits our choices in life – there are so many things we just don’t do, for fear of exposure. At the very least, it can mean a lifetime of crippling angst and floods of bitter, painful tears shed in private. We can spend years lurching unpredictably between wild anger at others, self-punishments of various kinds, and the deep fog of depression.

I suspect this is an especially potent issue for those of us who have been diagnosed late in life, and/or who are able to ‘pass for NT’, whether it’s through natural inclinations or personality, the dogged use of our intelligence, or by virtue of years of studying and slavishly imitating others. The pressure on us to be ‘normal’ has been so much more.

I have known this shame intimately. For decades, I went to great lengths to hide my ‘difference’. I would avoid doing or saying anything that I felt might reveal too much about my true thoughts, reactions and feelings, or single me as ‘unusual’ in any way. I especially knew I couldn’t afford to make errors. I was already nervously skating on too-thin-ice around the borders of this mysterious thing called ‘normal’. Others could make mistakes and laugh them off with a “silly me!” type comment, and get away with it. If I made a mistake, I would crash through that ice into a freezing ocean of exasperated reproaches, rolling of eyes, contempt and jeers, if not outright rejection and hostility. And of course, into more pain, increased self-hatred, and all the rest of it. So whenever I failed to hide my ‘difference’, I would try even harder to perfect my act of ‘normal’, or at least to conceal the times and ways I wasn’t.

By the time I was in my early fifties, I had reached a point where a lot of my ‘difference’ was hidden even from myself, squashed down, denied, or simply blocked. I had also withdrawn more and more from interactions with other people, and become somewhat of a recluse. I was deeply tired. For decades, I had tried to ‘deal with my issues’, but all the counsellors and New Age techniques and practitioners and self-help programs and books had done nothing to budge my stubbornly low self-esteem and chronic self-hatred. I had given up, thinking I was stuck with it, that I just wasn’t a particularly likeable person.

And then I began the process of discovering I had AS. Meeting others on the spectrum began to free me from shame - though even as little as two years ago, a friend wrote that she felt “you are still kinda hiding away some of your weirdness… it’s the stuff that you spend your whole life trying to cover up in shame.” (Private email, March 18, 2010). This started me thinking, and ever since then, issues have been slowly emerging into the light. For instance, I’ve been trying for ages to write my autobiography, but long-ago incidents which an NT would consider minor, are so bound around with the tentacles of shame, that I’m forced to stop writing while I untangle them. It’s still very much a work in progress! But I am determined to undo all those years – decades - of suppression and stifling of my true self, and to uncurl my spirit, mind and heart into true freedom.

I am also becoming more and more committed to helping other aspies and auties see that there is no reason to feel shame simply for being different. We have our difficulties and our trials, yes, by the truck-load, but we are not any less worthy of respect, or of allowing ourselves to simply be our true selves, than NTs are.

Furthermore, I firmly believe our burden of shame can only be completely shed by becoming part of the autistic community. Only by talking to others on the spectrum, comparing experiences, feelings, reactions, and having the “You do that too? I thought I was the only one!” factor come into play, realizing we’re not alone, that there are others like us out there, that we’re perfectly normal and okay as autistic individuals – only through this, can the shame begin to melt away. I have seen this happen, over and over again, as new auties/aspies come into the community. The letting go of old pain and self-hatred, and the beginning to ‘stand tall’ and experience autistic pride, is a beautiful thing to watch.

Yes, there are disagreements, even splits, and no, we’re not perfect – who is? – and there will be other aspies or auties we don’t like, can’t get along with, find boring, annoying, obnoxious, or even vaguely creepy. And yet. And yet. We are all we have, the only community you’ll likely ever find where we can be accepted, understood, as we truly are. Where no-one will insist on social skills classes before you can come to a meeting or join a forum. Where no-one gives a damn about eye contact, or expects you to know the ‘unspoken stuff’. Where that disastrous meeting with the boss or the strain of parties is understood almost without words. Where you are most likely to find someone with whom you can go on and on about trains or cars or history or castles, or whatever pushes your buttons, to your heart’s content. Where it’s okay to be yourself in all your autistic glory.

Let me repeat that last bit. Where it’s okay to be yourself in all your autistic glory. Autistics, whatever ‘shape’ they come in, are our ‘own kind’. Whether or not we go on to any kind of advocacy or political action around being autie/aspie, nonetheless, support and understanding of the kind only we can offer each other is almost certain to be the most important factor in our recovery from this crippling, damaging, horrible, autistic shame.