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.

3 comments:

  1. Thanks so much for posting this - I identify so much with all of it.

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  2. I'm glad you found it helpful Emma - it does seem to have struck a chord with many, it's rapidly becoming one of my 'most viewed' and 'most shared on Facebook' posts!

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  3. This is an aspect that never fully goes away for me. There are times I'm doing well - I'm confident, making progress, hopeful about my future, connecting with others, enjoying life, etc. (those are the times I forget about the shame, and foolishly think I've somehow moved beyond it's shadow... since I'm doing "so much better now").
    Then, one thing goes wrong. And another. And another. The chaos swirls around. My structure starts falling apart. I can't keep up. The wave is crashing down. I can't do it. I never will. (those are the times I forget about how awesome I am :) and that I need to maybe chill out a bit on my expectations and reach out for support).
    The friendship of my fellow aspies/autistics means the world to me.

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