“Follow your inner moonlight; don’t hide the madness.” Allen Ginsberg
Throughout my years of blogging I have always made it clear that I have life-long issues relating to social communication and sensory issues.
I was a misfit from the moment I started school at five years old. Why five? Well because it was just me until then – me, the Golden Labrador next door and my rather fabulous inner world. I had no reason to know I was different.
Since then life has been difficult at best. At worst, it’s made me ill.
I’m ill now having hit a crisis point with the general anxiety disorder I’ve had for the last three years.
I have always had anxiety right from as far back as I can remember. As a child I was generally THAT pale I looked as if I’d been exhumed and I had one ailment after another. I didn’t understand it was anxiety at the time and I feel sorry for that little girl because as bad as I feel now at least I know why I feel like I do. Little girl me didn’t have a clue and was very scared. I couldn’t tell anybody. How could I when I didn’t know how to?
I don’t know what it’s like NOT to have anxiety in some degree or other.
The things that most people do effortlessly are challenges for me. As soon as I go through the front door I have to pretend to be normal, whatever normal is. All I know that after 40 odd years of observation, on a good day I can pass for ‘normal’. On a bad day you’d be sending round the nutter van. This is because pretending to be normal takes effort and it’s exhausting. It exhausts body and mind and after all this time, well, I’m knackered.
Online I get to communicate without the problems I get when faced with actual human beings. The barrier between me and the outside world allows me to interact in a way that I’m unable to in life without making myself stand out. So what I am going to say may come as a surprise to people who interact with me online..
You see, for most of my life I have been aware that I am different but I’ve never known why. I must have spent hundreds of pounds trying to find myself within the pages of self-help books. Bouts of anxiety and depression over the years have led to therapy but therapy for what?
I never knew what was wrong with me and it REALLY bothered me.
My list of problems is ENORMOUSLY LONG but here are a few things.
Avoiding answering the door or the phone.
Being unable to walk into a room full of people.
Certain materials make me feel so irritable and uncomfortable. (Nylon? *boak*)
Struggling with eye contact until I was in my 30s.
Having too much empathy.
Being constantly bullied as a child and teenager.
Not being able relate to most other girls.
People calling me weird including the local pisshead and it must be bad when the local swiller tells you you’re weird.
Shutting down when overwhelmed. (selective mutism)
Escapism being VITAL to my mental well-being.
Soaking up people’s moods up like a sponge. (You’re having a shit day? Then so am I)
My body reacting in the same way no matter how many times I do something.
Why I am obsessive in thoughts and interests.
Why my ‘imaginative’ play only ever involved imitating what I’d seen on TV programmes or films.
My mood going from euphoria to despair and everything in-between in any 24 period.
Having to observe and copy in order to fit in.
Why I have picked at my skin so much that I have scars.
Always feeling a sense of unease. (WE’RE DOOMED!)
Always feeling the odd one out.
Catastrophic thoughts about everything.
Questioning why I am here.
ALWAYS feeling that I was not meant for this world..
You get the picture?
So I had resigned myself to being a weird sod. One of life’s oddities. A misfit.
Then we took The Boy to be assessed for autism and from the questions they were asking I knew then that I was autistic.
LIGHT BULB MOMENT!
For almost four years I debated whether I needed a formal diagnosis. Many people are content to just know that they are autistic and trust me, most people know. For me, it wasn’t that simple because some of my issues have become worse as I’ve got older and one of my fears is being thrown into an old persons home where I would die within a day because of the social aspect.
Also, I needed validation.
So last year I was assessed and in February this year I was formally diagnosed as autistic and the relief is immeasurable. I’m not weird. It’s just that I perceive the world differently.
Last year I went to the autism show in Manchester and it was while I was there that I came across Peter Street. Peter is a national and international poet and was diagnosed late in life as autistic. Peter was one of the speakers on the day and spoke of his experiences at school and his diagnosis. Hearing his story helped me to make the decision to go for assessment because I could see how much it had helped him and he was older than me when he was diagnosed so I knew it wasn’t to late for me. So, thank you Peter.
Peter also passed round a poem which was written for everybody on the spectrum. I have this on my kitchen wall and read it every day..
Not Being Me by Peter Street
Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see
if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out
like afternoon dance lessons
in the toilet
out the way because
I couldn’t dance the sheep steps
that’s why I dreamed
of being a sheep
so I could be like everyone else
I listened to this poem and cried because I understood EVERY word of it. How many times as a child had I prayed that I would wake up and be like everyone else? However, I wasn’t like everybody else and now I know why. All these years I’ve been fighting against my own brain so is it any wonder I feel so tired now?
So, as Mozzer from Manchester once said…what difference does it make?
Well, it just means that I have a formal explanation for why I struggle so much and hopefully I can get some support as I get older because I really am scared of having to live in Shady Pines and having to play bingo and shit. I would rather choke myself to death on my own false teeth!
I’m still me. It’s just that my reality differs from yours. That and I touch plugs waaaaay more than is healthy, y’know?
So there you are..
I’ve outed myself as the autistic human I am and have always been.
Thank you for reading.
Not Being Me poem used with kind permission from Peter Street.
Images via Creative Commons