Sunday, 13 July 2014

Autistic Pain

I've written before of autistic shame, but it seems to me there is a deeper emotion running beneath or parallel to that shame, and that's our autistic pain. As individuals and as a group, we are hurting, and hurting badly. Just about every aspie/autie I know has expressed this pain sooner or later, in one way or another, including the younger generation as they grow old enough to express it.

To know the source of this pain, we only have to look at our lives. We struggle daily. We endure frequent sensory assaults, and then feel shame and embarrassment for our meltdowns or shutdowns. We bang up against our social awkwardness and communication difficulties, suffering social isolation, loneliness, depression, low self-esteem and/or anxiety. We run headlong into the knowledge that the world's values are not ours, and that its rules make no sense to us, but we're expected to follow them anyway - and then we get cold-shouldered or criticised or jeered at if we try to be our true selves. We struggle with our relationships, which all too often fail or turn toxic or just never start. We wrestle with our executive dysfunction issues and our inability to 'handle life', feeling like worthless failures, and then are refused the help and support we so desperately need, or get given the wrong sort of 'help' that isn't helpful at all, and sometimes actually makes our lives worse. We get abused or bullied or made scapegoats for others' tensions. And then we're told it's 'our own fault', or 'for our own good', or that we're 'making a fuss about nothing', or 'not trying hard enough', or 'don't have the right to complain', or get asked 'why can't we just be normal?'.

We must exist in a world that doesn't understand us, that often refuses to even try, or to make even the smallest accommodation for us. A world that barrages us with negative messages about autism, making us out to be mentally ill or intellectually deficient; a scourge or disease or epidemic; a 'thief' of the 'real' individual supposedly 'buried' underneath our autism; or anti-social 'weirdos', geeks and loners, possibly even criminals and mass murderers.

Why wouldn't we be in pain? But the biggest and deepest pain, is, I believe, the one that is the sum of all the individual hurts, and yet more. It's the one that comes from our agonizing 'ill-fit' with the world. We are square pegs in this round-holed world, and we so know it. It's a constant abrasion at the nerves, sapping our strength, our hope, our faith in ourselves, our self-esteem, sometimes even our will to live. For me, this pain has always been intrinsic to my very existence, long before I had a name for it, or understood its roots. Some days, some times, it's closer to the surface, only taking a sad song, a soppy movie, or even just a stubbed toe, to make it spill over. Other times, it runs more deeply, like an ache in the bones, or a weariness of the soul. But it's always there.

There are of course no quick fixes for our pain. I'm not even sure in some cases the source of the pain can be eliminated. (How, for instance, would we rid the world of all sources of sensory overload? And should we, when some of those same sources – eg music - can also result in some of our most beautiful sensory 'treats'?) But other sources of pain, however, such as the distorted and mistaken attitudes and actions of others, can and must be eliminated. The pain and the damage being done is so immense.

One thing I do want to stress is that our pain is legitimate – despite what we are all too often told, we are entitled to our pain, entitled to express it, to share it with others on the spectrum who will understand and sympathise - and also entitled to do whatever we have to do to minimise it, stop it, or escape it – up to and including the right to change the world to accommodate us better.

If you recognise this pain in yourself, know that you are not alone. Know that only other aspies/auties will understand it. And that only as a group can we relieve it. We're in this together, my friends. And only together can we stop it.

1 comment:

  1. Bravo, ma'am. Your posts are coming at me with a ton of closeted emotions. I am tired of supressing my anger, my sadness, my joy. All to pretend I am one of them. I'm not. You are not. My kids are not. I am sick of the shame. I am over tired with existential exhaustion of wanting to feel a legitimate reason for being here, to earn my place.

    Thank you for each and every post. You speak for me too. I have communication difficulties and all I can do is cheer you on and say, "Me too!".