There are many days when I feel life is a combat; a clash: it’s about all problematic differences and inexorable imperfections. I don’t go looking for them – they go looking for me. These differences come and get me, bash into my safe world and make it unsafe. I don’t want it but there’s an adversarial edge about me. What I actually want and what I feel I am really looking for are similarities and sameness for comfort. But on days like these there’s a sense that my difference and my way of looking at life is a chasm, a great, hulking, massive mile-wide fissure between me and everyone else. I’m desperate and separate, and longing for the most familiar and recognisable people and beliefs so that I may latch onto something secure. I feel a need to be fully understood and yet I am aware that that is not possible, and it’s so tremendously heartbreakingly painful. People I know let me down by not being exactly as I need them to be and not saying exactly what matches my thinking. I need them to fit – and of course they can’t (and why should they?).
When I look back on days where I’ve felt this way, the me from the outside – the me who has made it through and has shrunk the chasm, feels so protective of the me who was crying for help and clambering over rocks on the other side. I want to tell that me how well she’s doing, how she must hang on, and how of course the fight is as big as it seems but that fight is not necessarily always with other people – it is with the chasm. I wish I could reach out and help her up and over and out of her distress.
But there’s a sense on days like those that rejecting people would be easier. Just let go of everyone and fall/fly/run – depending on my mood, and be free of contention. People are contrary, oppositional, and cause conflict. I don’t want the conflict of contradiction or unexpected words. It makes me feel unsafe. I want to be offered a hand, but would I take it? Would I trust it?
This is autism. This is how the part of autism that cannot cope with change, unfamiliarity and difference manifests in me. It’s not about prejudice or discrimination in the way a person with racism or hatred would see difference. It’s more about familiar thinking and familiar behaviours, similar likes and dislikes, similar needs and similar struggles. And it’s about feeling that people are doing and saying unnecessary things and adding to my distress. People simply seem more cruel and less warm. My ingenuous detector becomes highly discerning and there is very little I am able to trust. It’s similar to childlike intense distress at not being fully understood and knowing the adult brain can’t see what you are seeing. But it’s a grown-up, dark distress that can only deepen with the realisation that outsiders are unable to validate or comprehend your distress. I can feel as different from other white, forty-something western women with homes and children as it is possible to feel if they are not looking at the world in a similar way to me. And while I’m being so apparently oh so the same as everyone else the river of difference keeps flowing, wide and fast and keeping me separate.
Then when the time has passed and the difference waters are calm, I am calmer too. I feel guilty and am quite awkward about being so at odds with so much of the world. I see how I was irreconcilable and possibly inconsolable. I want to love and be loved and mend fences. I am filled with intense amicability. And yet I am full of fear for when it will happen again and doubts about who will hang on through another earthquake.
What I am trying to fathom out now I am over the latest chasm is whether these chasm days are necessary? Whether, like autism meltdowns, they are an obligatory release and rest from social play? Does all the fitting and understanding and placating take its toll on the autistic brain so much so that we need compulsory rejection days? Is modern life insisting that we continue to socialise, and function on a constantly communicative level when really what we need is to retreat? Is my brain marking out all these differences as oversized predicaments to get me to withdraw?
If there’s one thing I’ve learnt in the past few months it’s that I must withdraw and I mustn’t fight that need to get lost in the wilderness. Other people’s everyday social behaviour is like a tennis match to me. I have to remember to get out at intervals and stop letting the balls hit my head because it ruins it for them and it hurts me.
It’s a lonely place over the chasm, and the urge to curl up and weep is huge but as the world becomes noisier and less and less private the opportunities to do just that become fewer, and rather than wish I didn’t have to go there I fear for the times when I – and those like me may find we can’t escape for our solitary climb in our mind or in our own backyard.
Today the differences are not looking for me and I am not stumbling over rocks. I am not caught in a tennis match. I feel my heart is huge and the chasm is small. I am appreciating a view from my always slightly different angle on the world. I am not looking for people to only say things that make me feel safe, but I think I appreciate this feeling all the more for knowing so well what it’s like to be ripping my nails out trying to hang on.
I think autistic people want and need their right to position themselves where they want in the world, to look on the world with a knowledge of difference and to have that view validated, but we also need the offer of a hand up when we think we are slipping.