What’s become clear to me in the last few days is how this is all about coping, and how each individual person wants or needs to cope. If a person with an AS condition has ongoing support and understanding from someone close then the chances of coping are much better. A greater need to rest is a prime example and having a family/partner who accepts that need – and not just accepts it but understands it. It’s important when others rely on you that you should be understood.
My problems have caused a lot of anger. Why on earth should one half of team parent in the Carter house be rushing around while the other is lying on the sofa? I’ve struggled for years with the enormous guilt my fatigue has caused me. So I don’t allow myself to rest and I’m regularly irritable. I cope less and less; I drop things, I bang my head, I forget things. I feel gradually more and more overwhelmed and out-of-control. I begin to rage or cry. When there is hidden exhaustion and confused feelings things will surface eventually. The wrong thing or the wrong person will suffer. These feelings must be coming from somewhere therefore it must be the current situation that is the problem. And the current situation gets the blame.
If the person with an AS condition has fewer or less debilitating traits then the chances of them coping are much greater. The likelihood of coping for some of us hinges on an assessment but for others who can self-diagnose or cope with their own goals or have enough understanding then the official assessment/diagnosis might be just something else to put themselves through. I would guess that doesn’t stay the same for some though. The need for diagnosis and support probably changes. Right now the things I can/do or can’t/don’t do that upset me about myself need ordering somehow. I’m not coping and never have coped with my guilt and my failings. I’ve never understood just why I find so many things so bloody hard. I care about why and I care about not fitting. I want to explain myself to my family and not just in an “I’ve read a book so it must be right” kind of way. I want someone from outside to listen and tell me that I’m okay – because the non AS version of me is simply not okay – and help me believe I don’t have to be something I’m not. I don’t think I can do this on my own. No, I know I can’t. And that’s the difference between me and the people who don’t want a label: I’ve had so many people say recently ‘I struggle with this too’ ‘I struggle with that too’ and they point out that they don’t need a label and they are happy with their individuality and they say they’re coping or that those traits don’t make someone on the autistic spectrum. Well that’s fine and that’s them (unless they’re kidding themselves!). Maybe they have some AS traits, maybe they don’t. Maybe they want to investigate them, maybe they don’t. Maybe being happy with yourself and getting on with being you is the key to coping.
But I’d like a little bit of guidance because I’m not getting on with being me. And I think a calmer version of me who isn’t at war with everything will be better for me to live with. I do actually want to change in some ways. There’s a slightly tweaked version of me in there somewhere that is waiting.
I don’t want the label plastered across my chest in massive letters every day for all to see, I want it tucked into my pocket for me to rub my fingers over every day and find some comfort.