I’ve been throwing a few ideas around in my head recently, to do with autism, diagnosis, self awareness and such like. I kind of want to write something inspirational and calm and strong, something that shows how well I have my life together, but. I don’t. And while I can crop out the chaos in my instagram pictures and aspire to beauty and peace, that isn’t what this place is about.
This place is about honesty, authenticity, self awareness. It’s about me exploring my understanding of me and my place in the world through writing – very often the act of writing crystallises my thoughts.
So, since I got my diagnosis of “Autism Spectrum Disorder, probably Aspergers”, I’ve been struggling with depression and anxiety. That’s nothing new to be honest, I’ve been wrestling with both of those all of my life. (Should have been a clue there for the variety of medical professionals I’ve encountered over the years.)
I kind of thought that having that neat little label would sort everything out.
Newsflash. It doesn’t.
You see the label comes with a whole bunch of baggage. Stigma. Stereotypes. Misunderstandings. And instead of sorting things out, it piles a whole new load of stuff on the heap to complicate life further.
You have autism? You must be unemotional. Oh if only.
You won’t be creative. Actually, possibly more creative.
No sense of humour. Well, a lot of what society laughs at I find cruel. But trust me, I see the funny in me quite a lot.
Disabled. Will struggle with social situations. No friends. Ah. There it is.
I don’t feel disabled. But, if I were being honest about it, and I think we agreed I was going to try to be honest, I suppose I am. Disability is defined in the Equality Act 2010 as follows:
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
Right, OK then. Now I’m half deaf, but I don’t class that as being disabled. It doesn’t, to my mind, have a substantial effect on normal day to day life. Of course, if normal day to day life was held to include I don’t know, tuning musical instruments, that would be different. And there’s my first question, who defines normal?
For years and years I held down quite high paying jobs with plenty of responsibility. Didn’t look very disabled then did I? But I wasn’t actually any different to how I am now. I coped better it seemed. Shoved issues under the carpet more effectively. Parked me at the door, dealt with the work, often diving into it obsessively which just makes you look dedicated to managers, and got on.
But you can’t do that with parenting. There isn’t time off, you can’t compartmentalise children, or parent obsessively when you feel up to it then sleep for two days to recover. It just doesn’t work like that. So most of the time I feel like I’m getting by seat of pants, skin of teeth style, and the children are fine, they’re good, they’re happy but I’m missing in action.
I’ve lost me.
Yesterday I saw a glimpse of the me I’m quite fond of, problem solving, relating, bouncing about, being. It was good to know she’s still in there somewhere. What I need to do is work out how to let her out.
And that’s the bit that’s hard. That’s the bit that lead to the tweet that appears in Her Melness speaks rather wonderful post on courage. It’s hard some days to even remember that there is more to me than a whimpering disorganised heap of anxiety. More than a pathetically sad lump of quietness in a corner when depression wraps me in its suffocating blanket.
But. For once I have a plan, and it’s working. Not steadily, not fast, but in little spits and rushes, in a pciture here, a sketch there, a snippet of writing dragged from my imagination I am building the person I think I could have always been if I’d known from the start about autism.
If I’d known why working in bars was easier if I was hard and fast and sarcastic and all angles and no caring allowed. (Put that persona away, we aren’t using her again.) If I’d known that actually I *am* creative and artistic and capable. (More drawing. More writing.) If I’d known that I’m not lazy or forgetful planning *is* difficult but there are ways that will work. (Books don’t have to be written in linear format. Who knew?)
I do not have autism – it’s not something I can put down or walk away from, although sometimes it might look to you like I have. I am autistic, which just means that my brain works differently to the norm. Differently doesn’t mean better or worse by the way, it means different. If I try to squish myself into a normal lifestyle, or way of working, I will feel and be disabled. I don’t accept that. It’s not enough.
I am gloriously, unashamedly, creatively, chaotically autistically me.
Further reading
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