I would like to thank http://rosewinelover.com/ epilepsy action advocate once again for taking the time to write a guest post.
This month epilepsy me and neurology has asked me to write a brief (or not-so brief) piece on what it’s like to live with both epilepsy and autism; I shall endeavour to do my best.
When you think of autism, what do you see in your mind’s eye? Tapping? Spinning? Strange facial expressions or body language? Perhaps you envisage an aloof individual who sits alone in the corner at parties with a blank expression on their face.
You would be right, but you would also be wrong; autism can be all of these things and yet none of these things – all at the same time.
I knew from childhood that I was, somehow, not like my peers. I felt no real connection to them – believing that I was the only living person alive and that all other people were robots designed to keep me company. I preferred to spend time reading books, or writing stories; during lunch hour I’d spin around and around on the spot looking up at the sky, until it appeared – to me – as though the world was revolving around me.
By the age of fifteen it became obvious that something wasn’t quite right. I had what my grandmother called a “short fuse” and my temper was legendary. I displayed a physical violence and strength that no small wisp of a girl should possibly possess.
Of course, nobody had heard of autism outside of the medical world back then, and nobody knew that I also happened to be epileptic; I was viewed as a daydreamer on my good days and a tornado of terror on my bad days. On my average days I was referred to as “That weird kid” – and heaven help anybody who said that to my face!
Basically, I was undiagnosed, unmedicated and dangerous – both to myself and to others. I did have friends – extremely close friends – but I still felt like an outsider. I was very much alone with my frustration and my anger, and I didn’t understand why I sometimes woke up with my jaw twitching or with wet bedsheets.
By the time I was seventeen I had a steady boyfriend, but I couldn’t talk to him about it. Every time I stayed over at his house I would lie awake for most of the night, terrified that whatever made me wet myself on occasion might strike. I had no way of explaining myself back then because I didn’t know what was wrong, and – believe me – had it ever happened he would have dumped me in disgust.
Many years later I have learned some basic social skills and it is extremely rare that you will see me lose my temper, as I don’t have those adolescent hormones raging. I still encounter autistic meldowns, of course, but I tend to scream, cry and swear a lot; I can’t control what I feel building inside my head prior to these episodes; neither can I prevent the inevitable outcome – but I don’t slam anybody’s heads against bathroom sink or throw objects any more.
Socialising still confuses and terrifies me unless I’m with people that I know extremely well; I have had to learn to listen to conversations for a good half hour before daring to join in, and I need people to tell me what I did or said inappropriately if I offend somebody. I’m a well-meaning individual but sometimes I will say or do the wrong thing without being aware of it.
However, there is a plus side to being autistic, just as there is a plus side to most things:
I have very few inhibitions and I like to defy convention. I can embrace the world around me with a child-like excitement and wonder that often endears me to people. I wear clothing combinations that you wouldn’t often expect and I usually dress in bright colours.
I’m a member of my local Women’s Institute and from the first time I went to a meeting I was warmly welcomed due to my innate quirkiness – also, I suspect, for my ability to make the best pickles and preserves that some of the other members have ever tasted (well, that’s what they tell me, anyway).
I know when to tone it down, of course; I’m scarcely going to turn up to my sister’s wedding in June wearing a fandom t-shirt, my battered fedora and my Doctor Who scarf. I do love the freedom to be myself though, and I do not feel the need to conform to modern society.
If you are autistic, please know that you are not alone – and that you can live a full, happy, amazing life. Stim, dance, obsess over a new hobby or dress to your own taste as much as you like.
As my grandmother used to say: “Those that mind don’t matter, and those that matter don’t mind”. Embrace and enjoy who you are.
Gemma Wright is a keen blogger, who focuses on neurological disabilities and seeing the funny side. She lives in East Anglia with her husband and loves pickling/preserving, birdwatching, cross-stitch and Doctor Who.