@autistics

Last night I had a very broken night's sleep, culminating in waking early and not being able to get back to sleep. I tried to make up for it with an afternoon nap, but that too wasn't great. But then, for a while now my sleep has been disturbed, well, even more so than normal. Not the dreams themselves, more the feel of them. They have been like endless scenes from a film, of some perfectly normal and every day activity, but with the background music being all suspenseful and foreboding. Although, without any clear reason why.

Well, today I realised why. I don't know how common this is for autistic's, or whether it is more of a late realised thing, brought about by decades of our experience and ways of understanding something, especially of a deeply personal, or emotional nature, being denied and in many ways gaslit as inappropriate, or just plain wrong. But when I am dealing with things like this I tend to do a lot of the processing in my mind behind closed doors, so to speak. Only when certain conclusions and consequences become obvious do they begin to creep out into my conscious mind, often, at first, into my dreams.

In this case it has been the understanding that I am far more disabled now, than I was before Christmas and my back collapse and that this isn't going to improve. I have accepted, for some time now, that I am disabled. Both by simply being autistic in this world, but also because of the physical limitations of my back and chest (asthma/COPD, if you are unaware). But, to have to face the fact that it could suddenly get worse, especially without any apparent cause, as my back did over Christmas, is somewhat of a bitter pill to take. It introduces a level of uncertainty and lack of control, which is difficult for me as an autistic.

But, I also know that it is the nature of being a spoonie and what my mind has been trying to get me to accept. That if a good day is suddenly reduced to being able to do a load of washing and because I could actually get dressed, sitting in the sun for a while, as mine was today, because that's all my spoons would manage. As opposed to being so much more active, as I was used to being. Then that is the nature of the beast and that is what I'll have to get used to and begin to think about, as I plan my days and time spent.

It may not be ideal, or preferred. But, anyone can become disabled, at any time and it's rarely a stable, or static, condition. Ignoring that, or judging yourself by the standards of yesterday, does no one any good, least of all yourself. Or, at least, that is what I'm trying to tell myself (through writing this, as much as anything). That this is the new normal of my life now and I have to come to terms with that.

#Autism
#ActuallyAutistic
#Spoonie

@pathfinder @autistics
I don't know if you saw my last post, but I'm going through similar things. I feel that, in addition to having chronic illnesses and being autistic, the other underlying problem is that we're getting old. And even if we were healthy, the advance of age brings a natural decline in vitality. It's not easy to discern which part of the decline is illness and which part is aging. But I do know that I'm getting old, that's for sure. Perhaps one of the hardest things to accept is the loss of oneself. In my early years as a therapist, in the early '90s, I saw many elderly people, and I thought that one day I would reach that age. And now I'm there. It's no consolation, but it's interesting to know that it's going to happen to us all anyway.

@cesarpose @pathfinder @autistics

Sandra Thom Jones, autistic academic, is writing a book on autism & ageing. I look forward to reading it. There’s so much we don’t know.

I’m sorry to read about this new layer of disability Kevin. I think us late diagnosed/realised neurodivergent people, most of whom have masked furiously & lived in denial of disability for so long, have so much internalised ableism to deal with. A new & significant physical disability is so much harder to deny & mask. But maybe it helps us to be more honest about our disability more generally? Or about how disabling our differences have been, as a consequence of society’s failure to compassionately accommodate us?

I’ve taken to using a set of hiking poles when I go out walking (not “hiking”, just walking to the local shops or park etc). I don’t always need them, but when I do… They help my back so much. I found it easier to purchase a pair for my oldest, diagnosed with fibromyalgia, than to confront my own need for them. I feel self conscious using them… but if I don’t accept & accommodate this level of disability, my life will be unnecessarily hugely limited & restricted. Waiting for my back to “get better” seems pointless. It will sometimes be “good”, but probably more & more often, not.

@Susan60 @cesarpose @autistics
It took me a long time to over come my ableism concerning the disability of being autistic. As someone with a long term chronic health condition, admitting that I was physically disabled was easier. Although, for some reason admitting that it is degenerative, and suddenly experiencing that, is harder.
I have started using a walking stick when out and about, although I haven't had a chance to thwack any uppity kids with it yet 😆, I look on it in the same way as wearing glasses, you'd be a fool to be vain about it. Not when it can make such a difference.

@pathfinder @cesarpose @autistics

And thwacking people sounds like such fun!

@Susan60 @cesarpose @autistics
It does, doesn't it. 😆