I’ve always known I am me. I’ve also always known I am different to many other people. It has been hard to put my finger on it. As a young child I wondered whether it was because I was too clever – I was thriving academically at primary school – this was before my experience of the education system went terribly wrong! Or maybe I was an alien because I certainly didn’t seem to be on the right planet at all. Or perhaps I was a psychopath who was manipulating everyone she met with her constant conscious processing and analysis, and superficial charm that enabled her to pass off as normal when she very clearly wasn’t.
Of course, it became apparent that my difference is very real, but also very easy to explain. I am autistic. I have always been autistic and I’ve viewed hospital notes from around the time of my birth and listened to my parents accounts of how I was a slow feeder that didn’t like being held or comforted. In fact, there is nothing in my life’s events that cannot be accounted for by my autism and these early accounts of my atypical sensory processing are the start of a lifetime’s worth of examples of how my differences have created opportunities, challenges, misunderstandings, joy and normality for me.
Unfortunately, I did not know I was autistic for a very long time. I only knew I was different. I did my best to try and fit in and the resultant masking of my autistic traits played havoc with my wellbeing. Deep inside, I felt that I was probably ok – how could I not be? I was kind, I was thoughtful, I always did my best, I tried hard. But I also related strongly to the little boy in the Hans Christian Anderson story ‘’The Emperor’s new clothes”. Was I the only person on the planet who could see what was actually going on? Why when I helpfully pointed out mistakes or inaccuracies or called people out on the bullshit they were preaching, did they act as if what I saw was wrong? Why in this world where I had been brought up to be truthful was I being told to buy into the lies? My sense of probably being ok was gradually eroding into a sense of there being something fundamentally wrong with me.
Again, I struggled to put my finger on what it was that was wrong with me. My sensory processing is not typical of many peoples and I don’t experience things like a gut feeling or awareness of my gender, sexuality or even my likes and dislikes. Everything I “know”, I know in my head. I am female because I have a female body – I have no ability to comprehend what trans people mean when they say they know they are in the wrong body because I have no idea whether I am in the right body or even on the right planet! I am heterosexual because I love my husband and am attracted to him, however I do not even look at other people and sense attraction towards them because that would go against my commitment to my husband who I love deeply. I eat the food that annoys me the least and that I can tolerate in my mouth. Growing up I also knew that I didn’t “get” lots of the stuff that other people intuitively got. My attempts to understand and soothe myself took me down a variety of constructive and destructive paths and some of those led to long-term involvement from mental health services.
I have tried fitting in with a variety of groups of people, medical diagnoses, philosophies, and beliefs throughout my life much as most people do. The desire to know where we belong seems universal throughout humankind regardless of neurology or any other part of our identity. Although I developed an ability to camouflage my autism, I always knew when I wasn’t being genuinely me. My lack of a gut feeling doesn’t mean I don’t notice things, only that I notice in a different way. People use the expression “like an alarm bell going off” and I understand why they use that metaphor. When I meet someone or go somewhere and things don’t quite fit as they should, I experience an uncomfortable, edgy, clanging, noisy sensation that warns me something is definitely not right. I get this feeling when I meet people whose words and actions demonstrate different sets of values. It is more than the usual difference between the two that most people show in normal day to day behaviour – the typical modifying of our behaviour to act appropriately in a variety of situations – not being rude or insensitive and so on by kerbing our urge to swear or tell the truth regardless of consequences. This is something fundamentally different that sets off alarm bells for me. The contrast is as out of place as a spelling error on a typed page or a tiger showing up in my local woods. It is a concrete mismatch that is quantifiable and nothing to do with feelings. I know it (in my head).
I also “know” absolutely solidly when something is correct. I know my autism diagnosis is correct because I can (and have!) matched every single scenario in my life against that fact to test if it is accurate – and it is. And that is how I have come to write this blog. I have more of a sense of how I am as well as who I am. The label is so correct, I forget I am autistic a lot of the time, in the same way as I don’t consciously consider myself British or female or Caucasian as I go about my day. These things only matter when I am facing advantages or disadvantages based on these parts of my identity, the rest of the time they are irrelevant.
Gaining the correct diagnosis has righted a lot of wrongs, particularly with regard to incorrect psychiatric diagnoses. The hardest wrongs to right have been the labels I have attributed to myself, based on the lies I have believed that others who have misunderstood me have said about me and to me. The process I have been through post-diagnosis has been intense and all consuming at times.
It has left me with a sense of freedom to move on with my life. I am solid in my identity – I have always been me all along. The mislabelled bits were still me, the camouflaging bits were still me. I have desperately tried to unpick and categorise what is autistic me and what isn’t. How should I be authentically autistic, how do I unmask? I want to be able to be myself and act in a way that is more noticeably autistic at times e.g. by asking for people to adjust the volume or lighting in a meeting or to be able to regulate myself in whatever way works without feeling ashamed of flapping my arms about or bouncing up and down. I question whether I am too damaged, or too untrue to myself, or whether I am ashamed of my autistic identity because I can’t do these things comfortably. I am not. Every single bit of this is authentically me. No one is purely their neurology, no one is only their gender or their job title or their sexuality or religion. We are a mixture of all of these things and to try and stick the autistic bit in a separate category just doesn’t work for me.
I have seen the jigsaw puzzle piece imagery associated with autism and I don’t relate to it personally. I am my own puzzle that is still being put together. I have no idea what the picture will be and in fact I have thrown the box away! My autism is not a piece that was missing, it is more like the glue that holds all the pieces together. It was there when the first piece was laid and will be there until my puzzle is finished.
I was surprised and delighted to be included in: https://blog.feedspot.com/autism_blogs/
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