Coping in this altered world

The world has changed. I feel it in the water. I feel it in the earth. I smell it in the air. Much that once was is lost…

The Lord of the Rings: The Fellowship of the Ring

I first heard those words almost 15 years ago, sitting in the cinema with my father. I didn’t understand them until now.

We still have no concrete news. There is still so much uncertainty.

But the world has changed. The ground that I thought stood firm is shifting under my feet.

But the world hasn’t changed. I still have work to do; tasks to complete. I cling to my routines. They are one of the few constants that I have left.

I find myself less able to cope with the day-to-day challenges that living with autism brings. Last night, on the train, was just one example. I didn’t realise until the train set off that I was sitting behind a young lad who had his own issues, including noisy tics. I would normally have moved, except I have mobility issues at the moment so physically couldn’t.

I tried to use my normal strategies. But they didn’t work. I couldn’t control my reactions, although I tried my hardest. I had to use my bracelet to communicate when someone asked if I was OK. That’s the first time I’ve had to do that with strangers.

And the worst thing was, when I went to get off the train, the lad apologised to me. Shared the reason for his behaviour.

I wish I’d thought to say that he had nothing to apologise for. That he couldn’t help his reactions, as I couldn’t help mine. That my reactions didn’t mean that I was angry, or annoyed, or thought badly of him for acting as he did, or blamed him in any way.

But I didn’t think of that. Overwhelmed and exhausted, all I could do was say that it was fine and explain that I have autism. I wish I’d apologised to him in exchange. I just didn’t think.

I am having to process so many emotions at the moment that it doesn’t leave me much room for anything else. There’s grief, of course there is, even though we don’t yet know quite how bad it could be. Shock. Incredible sadness.

Those emotions I can share with others. Those emotions are completely understandable.
But there are others, more intimately connected with my autism.

Guilt, because I know that I cannot provide the practical or emotional support that will be asked of me.

Fear, because uncertainty is always frightening for me.

Anxiety, because I don’t know what the social rules are around this type of thing. And I’m out of practice with identifying them.

Shame, because I am thinking of myself at this time and not just of my father.

I don’t know how this will all end. But the world is not as it was. And it never will be again.


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