I wrote the words below (in italics) around eight months ago – before diagnosis, before forms, before I had any interaction with autistic communities online, right back in the early days of the “autism hypothesis” as I was then calling it. At that time I’d only just contacted my mother to start to ask about my early childhood, I’d heard the word “stimming” but didn’t really understand it, and I had no knowledge of autistic burnout or realization that I was experiencing it and had done so before.
I was yet even to receive the forms from the triage service or do any autism “tests” beyond the online one that I mentioned in The Discovery. I was still only just acknowledging that I even WAS autistic, and at that point I was only talking to a very small number of people about it and really only had Google and a couple of books to help me.
At the time I wrote the words I remember being really freaked out by them, even though I’d felt the need to write them. The whole concept of “just letting stuff happen” was so alien to me, having spent my entire life fighting to be “in control” and I was right at the start of the process of discovery. I had only just, a few days earlier, typed the words “I am autistic” for the first time and they still felt very foreign and strange and the whole notion of me being autistic seemed seriously wild – I didn’t spend a few years wondering or suspecting that I might be, as some people do – I’d gone from completely clueless to almost certainly autistic in the space of only a few weeks and my head was still reeling from the experience.
I didn’t even initially discuss them with either my husband or the friend with whom I was most closely corresponding about the possibility that I was autistic. I remember sending a rather coy facebook message to that friend saying I’d discovered something, but, initially it seemed too radical to say what – I’ve come a long way from then to now and my perceptions and levels of confidence have changed so much that I’m now publishing the words, which I couldn’t even send to my friend back then, openly on the internet!!!
But right from the off I knew I wanted to investigate the whole thing thoroughly. I wanted to experiment, to find out just what was going on. It was already obvious that the jiggly leg and the constant sitting with my legs folded under me and the gentle rocking and so on were likely autistic things and so I deliberately set out to learn to listen to my body and to what it wanted to do and to allow myself to experiment to see what happened.
Had I grown up knowing I was autistic and been part of any autistic community, this stuff might have been so commonplace in my life that it wouldn’t even have featured as a “thing to discover” but to me it felt new and big and important. I remember, much later, reading an account from another late diagnosed person saying it took them 6 months from diagnosis to reach that particular point. It took me only a few days from the point that I started to accept that I was autistic!
But I was deliberately experimenting. I am also pretty lucky in that I’m not the sort of person who feels shame about lots of stuff – I don’t have a deeply ingrained sense of “this is wrong” because I’ve always lived a somewhat random life, rather a long way from the middle of the “bell curve”! I knew by my teens that I was never going to be one of the popular “normal” ones and there’s no doubt that as I’ve got older I’ve increasingly adopted an attitude of “if they don’t like me as I am then I’ll just move on and not bother about it”. I have plenty of folk who do seem to be amused or entertained by me enough to stick around and whom I find interesting to be with so it’s not a big problem.
But, internally, this was for me, a big milestone, a big thing for me consciously to rediscover. And I remember, having typed the words “my autistic body” (perhaps an odd thing to type but it was what it was) looking at them with a mix of utter “this is so freaky and odd and new and scary and but ME?” and total “this is so comforting and reassuring and exciting and wow can this really be true” all at the same time.
So, I’m staying overnight at my friend’s. I wake. It is 4 in the morning. When I wake I am overwhelmed with anxiety. Understandable. I’m away from home. I had orchestra. People. I talked a lot about autism to my friend yesterday afternoon and evening. My life is in such a period of upheaval and learning and turmoil. The revelations about my 4 year old self are still shocking me and rebounding inside my head.
I feel sick. Really really sick. I have felt this way here before. I have usually put it down to a large meal in college or too much alcohol. Neither of those is true for last night. A fairly small supper (I have learnt to eat small when things are unfamiliar because I know being out of normal routine is often stressful and makes me feel anxious and sick, so less food offsets the feeling).
Usually at this point I would try to keep calm and lie still. Breathing exercises. Mindfulness. Sometimes it works. But often I cannot get calm. The sick feeling rises. As I am emetophobic I get into a feedback loop. Sometimes I manage to fend it off but spend the next hour or so lying there feeling shaky and drained. Sometimes the worst happens. I end up in the bathroom and return, tearful and traumatised, to bed, where I might then drift into a troubled sleep, but the experience stays with me unless I spend the next few days working on blocking it from my mind.
Since it became apparent that I am autistic (there, I said it again) I have been experimenting. I have never known why I sit on the sofa at home and gently rock, but I do. It is calming. Maybe there is more in me. Something else. More long-repressed behaviours. I know I always fiddle with things. My hair. Pens. Cords. But maybe there are other things that are part of me that I am yet to discover.
I lie in the bed and decide to try something. To stop trying any sort of control over my body and mind and see what happens. My body starts to move. Rhythmically rocking backwards and forwards. It feels right. Then the strangest thing happens. I want to flap my hands. Really really want to. My arms emerge from under the covers. My hands begin to flap, fast, furious. I don’t know for how long, but the nausea and sick feeling subsides. I calm. Tears run down my face. I know I am going to be OK now. I flap a bit more, just to check. But I am calmer. The anxiety is reduced. I finally lie still.
I have heard mention of hand flapping. Has that found its way into my mind. Am I “trying” to be autistic, to prove something to myself? Au contraire, I was actually not trying to do anything except what my body felt it wanted to do. It felt natural. Normal. Although massively at odds with everything I have learnt from society over the last 45 years.
I wonder if my particular flapping is an autistic thing. So I grab my phone and Google autism hand flapping. My phone knows how to spell autism these days. I find a video of a man demonstrating flapping behaviour. It looks right. I read on a website that autistic children flap their hands and adults may go back to the behaviour as a way of relieving stress and anxiety. I don’t know if I am going back because I don’t know if I ever did as a child. Maybe so, but if that was the case I was almost certainly told to stop. Suppress. Do not exhibit abnormal behaviour. Nobody would have known back then what it meant.
I am slightly creeped out by the experience. The sense of calm the flapping induced was profound and remarkably quick. It clearly stimulated something that stopped the sick feeling, stopped the acute anxiety and stress. I feel very strange about this. I know it is an odd behaviour. Not something I have done in this way before. It was what my body wanted to do. And it worked.
I wonder what will happen over the coming weeks. As I come to terms with my autism what else will be revealed? I find the term “stimming” strange and unfamiliar. It was not a term I knew until very recently. Again, I worry that I am making myself autistic to fit the model. But every time I return to the fact that I have been autistic all along. It is not that I fit the model. It is that the model fits me. That I have found myself. Discovered needs in myself that were hitherto hidden. Years of lying in unfamiliar beds at night feeling sick. And I didn’t have a way of dealing with it. Now I do. That was what my body wanted. So that’s what I did. My autistic body. My differently wired head. My new life. My new start.
I am 45 years old and I am at the very beginning of my journey of learning to live like me. I have had fleeting moments, over the past week, where I have thought “when will life return to normal”. I know that old normal will never return. Yes, there is a part of me that is deeply unnerved by this whole autistic world. It’s so new. It has all happened so fast. Where is my old familiar life?
The old life is gone. I would not want it back.
Two Days Later
I have become a hand flapper. It has become important to me. I also like to rock, and to do things with my fingers, waggle my feet, bash my legs against the sofa back, and, of course, allow my leg to jiggle, rather than making the effort to stop what is often involuntary movement.
I was flapping tonight. Not because I was feeling particularly bad, but just to keep myself calm and to explore further the effect it has on me. I flapped for slightly longer than before. I felt a feeling in my fingers that was familiar, and pleasurable, and special. And it triggered a memory from long ago, very long ago, of the same feeling and I realised:
I. Have. Done. This. Before.
The realisation hits me. I did this as a child. I wonder why I stopped. Did someone tell me to stop waving my arms around? Did I gain awareness that other people didn’t flap their hands and as I was learning how to live by copying and observing I stopped? Did some kid at school bully me for it?
I wonder when it was. But I know now that I flapped my hands as a child.
Mind continues to be blown by all this stuff.
Breathe for goodness sake, breathe!
It turned out that I hadn’t just been flapping my hands when I was younger. As soon as I started to relax about it and consciously allow myself flap in front of my husband he said “Oh, you’ve always done that – though not quite as obviously as now”. Things I’ve always done with fingers and wrists when trying to make decisions or when stressed turn out all to be part of the same thing, but just on a smaller scale. I’ve since discovered that there are all sorts of times when I flap my hands, and these days I often hardly notice. Sometimes it’s when I’m happy about something, sometimes it’s for anxiety relief. These days I generally just go with it!
And, like so many autistic things, it possibly looks a little unusual from the outside. My husband (who also flaps his hands from time to time) frequently tells me I look like a T-Rex (I’m totally cool with that – I was a mad dinosaur fan as a kid and am still somewhat interested in them), and I suspect that some folk might find it a bit odd, but from the inside it’s just a natural form of expression and something that’s now very much part of my life.
The only thing I do have to make myself consciously remember from time to time is not to flap my hands while I’m holding a drink – that doesn’t work out well!!!