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An Introduction

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My son was diagnosed with autism shortly after his 4th birthday, prior to that I knew next to nothing about autism and sent off without so much as a leaflet about what autism is I turned to Google (obviously). I thought autism was this whole new world to me that  I needed to educate myself about. But the more I read the more I realised autism wasn’t new to me at all, it had been part of my life all along, I just never knew it had a name before.

My first eureka moment was the realisation that my mum was without a doubt autistic. I recognised my mum in the descriptions I read of autism, even more than I recognised my son in them. But I didn’t see myself in those words, anymore than I saw reflections of myself in my son.

But then little things kept filtering through my reality perception filter, pricking at the bubble I had around myself, the illusion of who I told myself I was… hadn’t I always felt different from other people, always felt there was just “something” about me, something indefinable that put people off me? I read about how autistic people have “special interests” and thought about how I would borrow books from the library as a teenager on whatever topic had captured my attention, then I would copy them out word for word until I had collated folders full of information on the topic.  And although I tried not to notice and not to ever think about it, since becoming a mum I’d really struggled to form any friendships with other new mums,  I’d made myself go to mother and toddler groups and tried my hardest to make conversation with people. But while I’d seen friendship groups forming all around me, I was on the outside, not really connected to anyone and I had no idea why. The same thing happened whenever I started new jobs in the past. I could never understand why but it always happened.

Early on in my journey I attended an autism fayre and was listening to a presentation by a man who’d worked with many autistic children. He was telling the story of a severely autistic girl he’d worked with who barely spoke but as he got to know her he’d discovered she lead an intricate and complicated fantasy life in her head… that was one big needle that pricked away at my little bubble… I’d never spoken to anyone before about my own double life or the other worlds I’d lived in. But when I was about seven years old I’d decided that real people were too much hard work and I would live out my life in a fantasy world instead. To various degrees that fantasy world has been part of my life ever since, it shelters me from the real world, I hide in it, I don’t deal with things that happen for real because I make it all alright in that world instead, well, obviously it doesn’t actually make it right but I somehow make myself feel alright again. It’s complicated. But I’ve recently learned this is a common and well known coping mechanism for autistic people.

I’d never heard of anyone else doing this before, I thought it was a weird thing only I did and I’d never admit to it to anyone.

What a coincidence? That was uncanny. But me, autistic? Don’t be daft!

However, now I was slightly more open to the idea I started noticing more and more things, things that I usually tried to ignore or push away, things I buried and hid from in that aforementioned fantasy world (my reality perception buffer zone!) The way I get dizzy and kind of confused in supermarkets and similar places, is that a sensory issue? The fact I absolutely will not, under any circumstances try any new foods at all, however I’ve come a long way from my childhood when my dad joked that if it hadn’t been for baked beans I’d have died from malnutrition. I wasn’t a fan of eating at all… And hmmn, remember when I barely left the house for two years when I was 18, yeah, that was a bit extreme wasn’t it? The fact I need a long warm up period if we’re going to do something different because if you spring something new on me I’ll automatically say “no”, I don’t like anything different, I’m kind of scared of everything to be honest. I get anxious, I’m prone to panic attacks…

But how could I be autistic when my social skills were just fine? Maybe I was still a little on the shy side but I didn’t constantly come out with the wrong thing and I liked to think I could read people pretty well. I’d grown up around my mum making constant social faux pas and I was excruciatingly aware of the consequences and adamant I wouldn’t repeat them. So I’d spent a lifetime studying what the “done thing” was socially, I observed people, I noted what people liked, what annoyed people, what is considered good and bad, I copied what worked for people – I was an expert! To the degree that I actually said very little of what was in my own mind and instead put all my energy into trying to say the right thing that the other person expected to hear, whatever would make them like me. If it was honesty they were looking for I’d struggle. Anyone reading this who knows about autism and “masking” will realise that my social skills sound a hell of a lot like masking. It is a performance, I even have a running commentary in my head of how well I’m being received and I am terribly unforgiving of any perceived mistakes. I can’t actually be around people for great lengths of time because I need time to breathe, to not be “on”, it’s exhausting.

But whether this was masking or not, I got it right didn’t I? I had friends, close friends, wonderful friends who I’d known for many years, the odd person here and there who I’d connected with and held onto… okay so I struggled if anyone new was introduced to the group butbutbut… I was married, I had a job, I had kids, I seemed relatively normal in social situations, no one would mark me out as odd… So autistic? Doubtful.

I eventually found my way to blogs written by real, genuine autistic people and I started recognising myself in them, they gave me the terminology to understand and explain myself. And I started realising that some of the things I did socially weren’t actually the right thing to do, I recognised my tendencies to overshare; infodump; monologue. Some of the things I did wrong I didn’t actually realise were wrong until I heard autistics discussing their own social faux pas and I felt mortified that I’d been doing them too. I started to understand some of the reasons I’d not formed close bonds with those other mums in the mother and toddler groups, lack of social energy aside.

But this blew my self-esteem and confidence out of the water. Which is where you find me now, struggling to find my voice again and wanting to find a way to accept myself again. My fantasy world, while still there, has stopped me facing up to my own truth and now if I’m to get anywhere I need to find it and embrace it. For my sake and my son’s.

Initially I rejected the thought that I might be autistic. What does that even mean – that I’m disabled? I don’t feel disabled. And all the people in my life who think they know me – does this mean I’ve been lying to them all this time and the person they love doesn’t exist and therefore ultimately, I’ll lose them? I’m terrified of loneliness more than anything in the world.

Eventually I decided to pluck up the courage to ask for a referral for assessment, I’ve been on the waiting list for about 5 months now with no end in sight. I don’t know whether I’ll get the diagnosis, although there’s much evidence for, what if I fall below the clinical threshold and they decide it isn’t necessary? I’m not sure where that will leave me. If I’m not autistic what am I? Does it matter? Maybe the important thing is not the label but just discovering who I am and finding a way to work with that, rather than continuing to swim against the tide.

We’ll see.

 

 

The Life Half Lived

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What is bothering me the most right now is the feeling that so far my life has only been half lived, I haven’t lived life to the fullest, I feel like I’ve missed out on so much.

There is this dream image of life that I hold, it’s filled with interesting people doing interesting things, travelling being one of them… and I feel like I’m failing, I’m unfulfilled and frustrated and I don’t seem to be able to go for those things and make them happen.

I keep hearing that life is what you make it, and I know life is what you make it, but I don’t seem to be able to do it and I don’t know why? I just feel too timid and mouse-like. I daren’t take the risks, I get overwhelmed too easily and run away back into my cocoon, into my fantasy world.

I’m all these things the world tells you you shouldn’t be. I’m too busy battling the chaos of everyday life, floored by the little things to achieve the bigger things. And as a result I feel like I have no control over my life. I don’t understand how people manage to do things and I don’t.

But this got to the degree that only a few years ago I didn’t even know what I wanted anymore – or more specifically I didn’t believe I was allowed the things I wanted so I stopped wanting. I couldn’t fathom why I felt that way, but actually I’ve always had this deep seated belief that somehow things that other people take for granted in life are not intended for me. No one was more surprised than me when I finally got a boyfriend, got married and had children. Although the miscarriages I suffered, the autism diagnosis in my son, when my baby girl was found to have a hole in her heart – all those things at the time strengthened the feeling that I wasn’t supposed to go down that route and “now look what has happened!” I was being punished for daring to be like other people. It was like I’d forced and lied and blagged my way into somewhere I shouldn’t be and now I had to live with the consequences.

(Re. my son’s autism diagnosis – when he was diagnosed I had no idea what autism was and based on the initial things I read about it I thought we were doomed to a life of struggle and misery…  I was reading the wrong things, I no longer see it as a negative but that is an entire new blog post in its own right!)

But this life half lived thing, this is what I want to change. I want to feel happy and fulfilled. I want to calm the chaos so I can think straight again and work out ways around the obstacles I find before me. You can’t do that when you’re in denial, you just keep headbutting the wall in front of you while still trying to pretend it isn’t there, it’s never going to work.

For example –  I wanted to travel as a teenager, so what stopped me? My brother traveled around America on his own, why couldn’t I? Being honest with myself I had no one to travel with and therefore didn’t feel I could do it. Travel involves lots of talking to people, using the telephone, booking things, arranging things… I always feel like I need someone to hide behind, someone else to do the talking when my words fail me. I tried a tiny bit of travelling to France with my brother when I was 18 and I swear I nearly had a nervous breakdown. I ended up sitting on a railway station platform in Montpellier for a whole day pretending to be mute if anyone attempted to talk to me, scared out of my wits. My brother meanwhile went sight seeing. I sometimes feel incapable of doing things independently. I do not want to be this way. Quite frankly it’s embarrassing the things I fail to do because it involves picking up a telephone.

Women are supposed to be strong and independent these days don’t you know?

Another example – Parenting. I want to be one of those people you see having picnics together with a large group of friends, kids all playing together, parents chatting etc. Someone probably produces one of those colourful parachute things at some point, because there’s always a parachute at those things… This one is really getting to me because I feel like I’m letting my kids down (totally ignoring the fact that my son doesn’t do well in those types of environments anyway). But, 1) I don’t have a large group of mummy friends to do this with anyway… and actually, 2) I did get invited to one such event earlier in the summer do you know what I did?

I bailed out.

Why?? I felt intimidated by having to talk to loads of people I don’t know – though I’m sure are very nice – scared of getting overwhelmed, committing social faux pas – plain old social anxiety, scared of having it rubbed in my face that my own daughter’s birthday was a complete let down in comparison to this because of my own failings as a person, etc. etc. And then I totally hated myself for having the opportunity to do something I said I wanted and to build those networks for myself and have my daughter experience that… Why can’t I be the person I want to be?

I feel like I’m trapped inside myself and sometimes I feel disconnected and far away. Vague. I feel I lack the courage to really be all I want to be. Instead I get stuck in ruts because I fear change so deeply. But that leads to depression. Oh and did I mention that anxiety? Another reason I don’t do change, I find it so unsettling to the core of my being. I don’t like rocking the boat, it makes me terribly sea sick.

But I’m also scared that my life is passing me by and I’m amounting to nothing. I want to travel. I want to live on a houseboat and be some kind of artist or writer. I want to follow a passion. I want to be alternative.

Instead I work in an office, I’ve worked there for over ten years and yet people who’ve worked there barely months know many of my colleagues better than I do. I don’t like too much attention and so I try to make myself fit in to the point of being invisible, there’s nothing about me that stands out.

I am a mouse. Hear me squeak.

But I want to lead a life I’m proud of. At funerals, bit macabre to admit I know, but I love hearing people’s life stories, and to this point, I don’t like the way my life story is sounding. But now my eyes are open and I’m not in the business of denial anymore, I plan on changing that.

 

Me and people

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For as long as I can remember I’ve had people telling me I should be more like this, more like that – more confident, less shy, less anxious, more outgoing etc.etc. And so I try to be more like this and more like that and an unhealthy self-loathing emerges whenever I fell short.

To avoid hurt I did all that I could to ignore the elements of myself that didn’t fit my long held image of “Who I should be.” I pretended to be that person to the world, blagging my way through as best I could while making mental notes of every scrap of social etiquette I came across, constantly refining myself and trying to improve.

All the while I was pretending and blagging underneath it all lurked this feeling that I wasn’t good enough, words like “fake” and “pretentious” irked me like they were trying to tell me something. Everybody, everywhere will tell you to “Just be yourself,” like that’s easy to do!  What does that mean? How do I do that and still manage to be acceptable and liked? What if your “yourself” is isn’t right, irritates people, results in people giving you “that look.”

I do a good line in basic socialising,

“Hi, how are you?”

“I’m good thanks, you?”

“How was your weekend?”

“Did you have a good evening?”

I also do great in-depth, soul searching, reveal all, meaning of life, death and the universe type stuff. Alcohol is often involved. Sometimes this happens by accident and I feel like I’ve shamed myself and got it all oh-so-wrong.

But anyway, what I don’t know how to do is the in between bit; how do people move from the introductory pleasantries to the in depth deeper stuff of friendships? It was far easier as a student when copious amounts of alcohol was involved, but now… I don’t understand how people cross that bridge or navigate that minefield more like it.

I have an easier time with open and very friendly people, who smile a lot (so I know I’m getting it right when I’m getting it right) and are less judgemental, more easy going. They put me more at ease, although I can’t say I ever feel totally at ease – not even with people I’ve known for decades. People who play their cards closer to their chests or play it cool – I can’t be dealing with people like that. Give me an oversharer any day! I’m also drawn to people who talk about themselves all the time and can’t stop talking, there’s no pressure on me to keep a conversation going, they like the spotlight and all I have to do is add a few “prompt” questions here and there and they’re away. I barely even need to be there!

I often end up befriended by people who think of me as shy and delicate and want to take me under their wing and save me. Which is ok to a point, but it can get suffocating, especially when what they think is best for me really isn’t what I think it best for me. Being a people pleaser I struggle with saying no, and then I find myself in situations that cause me considerable stress. Any attempt at admitting to feeling anxious, shy, any “weakness” is usually met with exasperation and the words “But you have to try to be more….”

Cue more self hatred and hyperventilating, feeling like my life has been taken over and I no longer have any control over it… and oh, did I mention I love cats?