It feels as though storm clouds are gathering in my head these last few days. I’m not sure why, and I can’t work out if there’s anything I can do about it, but I have that feeling that I’m building the sort of tension that will eventually lead to meltdown or shutdown. But not yet. Somehow the energy is yet to be released. Things are too controlled. Maybe, knowing I have a weekend of things to do out in the world means that I’m keeping control somehow. I have that feeling of wanting to cry, but not being able to.
It’s an unsettling feeling, though not totally bad. I don’t even think the overload in my head and the build up of emotions (many of which I’m struggling to identify for alexythmic reasons) is entirely negative. It’s just that I can feel a gradual build up. Of something. I’m trying to analyse what that something is. I’m trying to judge whether some sort of big stimming session would help. I don’t know. It’s a very edgy feeling.
This is the fifth attempt I’ve had at writing about it. What has emerged as a common theme in the first four attempts is that this state is a mixture of two lots of emotion. One lot could probably be called negative, and the other, positive. They are existing inside my head simultaneously, and both pouring these strong, but not totally identifiable, feelings into my system. I get emotions like this. I always have, except when too depressed, or taking large quantities of medication, which seems to blank many of my feelings out anyway. One reason I hesitate to take medication is that much of it takes away things that I value – my appreciation of music, my excitement in the world, and so on.
And so, these huge waves of emotion keep washing over me, and I’m trying to untangle them in order to deal with them. Maybe a therapist would help with this, but I don’t have one, so I’m trying to do it on my own. Although it’s becoming obvious from trying to write it down as best I can that the same things are recurring over and over and my mind is still trying to deal with them. I’ve almost certainly written about them here before, and I apologise for what is probably terrible repetition (my husband says that he is used to me saying everything 98 times) but it seems that this need for repetition, for reassurance, for rehearsing the same argument over and over is probably one of my autistic traits too – something I need to do to get things clear in my mind.
And so the negative thoughts:
The constant nagging knowledge that my life will be limited because I simply don’t have the productive energy that most people do because I’m using so much of my energy to cope with my environment and to process language. I don’t like being limited, but decades of experience have shown me that the consequences of not consciously limiting my life and of trying to “be like everybody else” are poor mental health and catastrophic burnout. I am furious about this. I do not want to have to limit my life, but I must, and I know I must. I have to learn to be gentler, and allow recovery time.
I’m still not fully able to explain to people what being autistic really means. I’m still encountering “yes, but we all get tired…” types of comments, and I’m not yet able to articulate in words that what I mean is something different and that I’m not on about it being the end of a long week and I just fancy a bit of a lie-in. I need to write a blog post about this, I know I do. It is nibbling at my insides (yes, it feels like that) and I need to deal with it. Ditto the current controversies about stim-toys and spinners. I have so many and various thoughts about the whole thing, but I can’t make them into words currently, and that is frustrating me.
And talk of schools and classrooms and so on keeps pulling me back to my own childhood, the door onto which I had closed, I thought for good, until last year, when it had to be forced open. And once it was open, it was really useful for getting my diagnosis, but it hasn’t brought back floods of joyful memories, but of a time when my main objectives were to stave off bullying, to learn to behave, and to achieve good results academically. I had no chew toys or spinners – so I chewed my tie and my jumper and I played with bits from my pencil case and got into trouble for doodling during lessons (among other things).
The late diagnosis thing still irks me. The fact that I had to get THIS broken before anybody noticed that I was autistic. The fact that I was born at a time in history when the world didn’t know about people like me. I’m still sad and angry and regretful at so much of the first 45 years of my life. I’m still furious with the mental health specialists who didn’t know. Today we talk about acceptance being preferable to awareness – even the most basic awareness 20 years ago of autism in those of us who were AFAB might have saved me so much heartbreak.
And here I am, a 45-year-old burnt out non-binary autistic, going through the menopause, learning who I am, trying to rebuild my life, and doing it, currently, without help from anyone except a husband and friends. And I often feel like I am breaking, like I just want to vanish off the face of the Earth, because my youth has gone, and I want to cry for all these things, because they’re still bothering me.
But the positive thoughts are also strong:
The relief at no longer feeling the pressure to be a high flyer. The knowledge that I have a disability (and yes, for me, it is disabling – there is much to be investigated regarding models of disability, but that is not for now) and therefore I can stop beating myself up when I don’t achieve what I thought I should be able to is reassuring. The knowledge that the levels of self-care that I need are now “permitted” is such a huge relief, so liberating, and even joyful. I don’t have to be some kind of superhero any more – I can built this new life and stop pretending to be someone I’m not.
Most people I know are being massively supportive. I’m hugely lucky to have most of them in my life. Far from being deserted by old friends, I’m still, even, making new ones, people who care enough to be interested, people who read this blog and who are helped, people who understand the difficulties, and some who do not but are investing their time and energy and are willing to learn and be caring and understanding. This makes what I could call “big feels” – I don’t have a better expression than that currently. Like so often these days, I just hope people know what I mean.
And though I cannot change the past or do anything about my childhood or its difficulties, I’m now massively enjoying allowing myself to explore the world that has now opened up of toys and things to fiddle with and things that I can buy for myself without anybody to tell me not to. I can sit and stare at my glow in the dark spinner until it runs out of glow, I can roll the ball around on my fidget cube for hours at a time, I can have all the toys now that I never had as a child, and because I am old and spend the majority of my time at home alone nobody will tell me off for doing these things. I am making up for lost time in a big way, finally releasing all the bits of me that have been hidden all these years.
And the fact that the diagnosis has come at all, even this late, is still enough on its own to make me cry with happiness. The relief, the liberation, the knowledge of who I am and why I am and how I am. The permission to be something other, the explanation of why I’ve felt as I have all my life, and the solving of hundreds and thousands of mysteries from the last 45 years. The letting go of the old expectations, the shift to a neurological identity and a gender identity that feels properly comfortable to me, rather than one I was taught was the case. The hope that I will eventually recover from this burnout and will eventually get through this phase and that life will be better than it ever has been, and that I’ll eventually build a life that will be right for me.
And part of what is causing these emotions feels like some sort of huge “sigh of relief” from my entire being. I read about labels and words and why do I need the descriptor “autistic” if I know who I am. For me, I needed that descriptor to SHOW me who I am. Learning about what it means to be autistic is teaching me how to be who I am – because after 4 decades of acting roles, my real self has become somewhat obscured and needs a little help to emerge. I’ve had a lot of training to be someone else. I have a lot to discover. The minute I knew, and I allowed myself, and I learnt for the first time in my life to follow my instincts, things felt very very different.
And each time I’ve tried to write about this, these simultaneous bunches of feelings keep emerging, over and over again. Not even oscillating, like the states described in my earlier post, but together. Sadness and anger and regret alongside relief and liberation and happiness.
And the word at the end of every piece is still “autistic”, as if I’m still trying to make my head accept it fully, embrace it fully, and be able to go out into the world and live it fully. I want to do that, so very much. I know that it will not always be easy – but I do not shy away from difficulty and I never have.
Even writing it all down like this has actually changed how I feel, released some of the energy that I had when I started typing around half an hour ago. I’m calmer. The storm clouds have rolled on past for now. They will be back. The next meltdown and next shutdown will happen at some point, but typing everything up like this has had a healing effect for now, sorted things out a little. If anyone’s still reading, then thank you for indulging me. It has helped.