Monday, 3 April 2017

Anger leads to hope not hate

I am not your shield, nor your inspiration. I am nothing and no one special. I am not success nor failure, the reason or the respite. I am not the answer but I do have a question. 

How autistic is too autistic?

Woman walks down the road. She's dressed pretty normally for someone her size. Work rucksack says she works in tech. Flats say she hasn't got time for heels. Make up says she cares about her appearance. No one stares. No one notices. She just blends in. 

Woman walks down the road. She's dressed pretty normally for someone her size, except for a pair of on ear noise cancelling wireless headphones. Work rucksack says she works in tech. Flats say she hasn't got time for heels. Make up says she cares about her appearance. Everyone stares. There are smirks. There's no one behind her on getting on the bus, nor in front. All the smirks are aimed at her. 

One thing changes. One thing. The person beneath all those things didn't change. Just the outward presentation of that person. One relatively tiny little thing and yet it's enough. To blip. To radar. T be noticed. To decloak. 

Is it any wonder that I spent an entire lifetime trying to blend in? Is it any wonder that the cost of doing that for 30+ years would almost amount to my life? Overly dramatic? Nope. Just the plain honest truth. When your entire day is devoted to simply counting breaths, it is all too easy to forget to count. 

So. Let's deliver the rest of this in the same vein. 

When I was 8 I learned that crying when you were hurt got you called a cry baby. I stopped crying. Emotional or physical, I stopped crying. This had many implications, the direst being leaving a spinal abscess way too long before seeing a doctor on a Saturday, being emergency operated on the Sunday and being on a antiobiocs drip constantly for 3 days. It leaked into my system. I had been wondering why I felt a little sick. 

Emotionally the outcomes were the exact opposite. I shutdown for 3 years at secondary school and didn't speak unless spoken to for most of them. I had no physical contact with anyone for 3 years apart from physical punishment when I forgot to be invisible and the words exploded out of me in anger and frustration. 

From this I learned to never be angry or frustrated. So I swallowed all of that as well, so that in my 30's when a counsellor asked me what anger felt like, I said no. I couldn't remember. Of course I did feel it. It came out in other ways. Choices I made. Things I did. Lacking the insight and emotional maturity to understand. I do now. Does that make it better? Who knows. 

I learned at 12 that visible stimming was bad. Hands held down. Constant nagging. Constant centre of attention, something that by that point I found painful. I didn't know the word stim. Until very very recently I viscerally hated the word. Ugly. Synaesthesia tasting ugly. Of razor blades and barbed wire. Can synaesthesia also be emotional? An emotion linked to a taste of metallic sour? Who knows. No data. So I found other ways to stim that were less noticeable. Because you can try and stop. You can try all you like, but just like something like restless legs syndrome (which I also have and therefore can speak from personal experience), the harder you try, the worse it gets, the worse you feel, the worse the need. 

No one knew I had synaesthesia, least of all me. Random verbal induced sensory assaults. Never knowing where they'd come from next. Music. Sounds. Nature. Words. Scents. Battered in the wind while trying to concentrate on homework, on schoolwork, on housework. 

I learned very quickly, I think at about 6 that if no one could find me, I was okay. Safe. Safe from demands, safe from messing up, safe to stim, safe to disappear into my mind and not come out, safe to sit and say nothing and not engage if I didn't want to, safe from unwanted and scary intrusions of any kind. So I hid under the stairs in the cupboard next to the hoover. Or I hid outside the front door in the bush to the left of it which had a nice handy sized me hole in the middle of it. I spent hours away, close enough to appear magically before everything kicked off between someone noticing I was missing and getting angry I was missing. 

Not concern. Anger. I associated concern with anger. So, of course, there was that to work through too. Couldn't bear anyone to care for me because I associated that with them immediately finding a reason to become angry with me. Backed into a corner by concern. Terrified of too much. 

From bad to worse. So much worse. Physical punishment for not understanding rules. Rules that weren't explained to me in ways I could comprehend. Removal of right to watch something if I became over emotional. Removal of right to watch something if I started to mimic. Punished if I said the wrong thing but not understanding what the wrong thing was. Punished for the behaviour of others, because somehow I had become responsible for them too, responsible for directing and controlling others behaviour when I couldn't even control my own. 

I was autistic. I didn't know. My parents didn't know. 

I have read, over the past 2 weeks, many stories of those who were diagnosed as children and put through terrible things on a daily basis. I have read of abused trust, abused bodies and abused minds. I have come to accept that I am lucky but also that I have a responsibility. A responsibility to explain that damage doesn't always come in a nice neat 3 letter acronym package. That late diagnosis, while possibly looking like nirvana to some of you, can be it's own little hell ride, unique to each of us, each of us with a story to tell and a journey to recite. Not all are negative. Not all are full of pain and misunderstanding, loneliness and an ache to just be normal. Some are tales of hope and love and redemption and positivity. 

But too few. Way too few. 

So I decided to speak. Speak so that Autism Speaks and others like them don't get to fill a void of silence. By my silence I am complicit in not only allowing blue to become the colour of autism but also guilty of doing what I did as a child. Hiding under the stairs in a cupboard and hoping no one will notice me. 

I am not a child any longer. I am an autistic adult. I want to tell every parent out there who is having a bad day what the future might hold. I want to tell every parent who's dealing with their third meltdown of the day or the fact that they even been hit in the face for trying to hug their child what the future might look like. 

It might look like me. It might contain a child who grows into a woman. It might contain a child who in the process of becoming a woman makes a lot of mistakes. Follows the wrong paths. Chases the wrong emotions. Attached to the wrong people. But it also might contain, eventually, a woman to be proud of. A woman who walks freely and without fear. A woman who dances around the living room with her headphones on and doesn't care. A woman who found knitting is the perfect stim - healthy, productive and portable. A woman who found a job where she is not only accepted or tolerated but where she's embraced for her differences and the different ways her brain works. A woman who has been loved and has loved many ways and many times. A woman who has adventured and explored, and always come home safely. A woman who gets what she needs from the NHS because she has found ways to communicate what she needs and wants and persisted in finding those who will listen. 

A woman who walks down the road. Wearing clothes that are appropriate considering her size. With a rucksack on her back that's says she works in tech. In flats because she doesn't have time for heels. And with noise cancelling headphones on her ears despite the looks and stares because that is what she needs and these days, she's all about what she needs. 

Because this is what I am. A person who puts herself first. A loyal friend. A good listener. An empathic person. A honest straight down the line person. Eyes full of delight. Heart full of love. Brain full of intelligence and curiosity. Self knowing and self aware. Occasionally hedonistic. Sometimes carefully out of control. Fireworks and colours and drift and soul and connections and yes, different. 

I am different. I am autistic. And I love my life and I love my self. This is my future. 

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