Wearing my mask #TakeTheMaskOff

If you’re reading this, I’ve finally overcome a case of writer’s block and written a new blog post! It’s been a year since I last blogged, I’ve thought about taking my blog down, but people occasionally like one of my posts and say they found it helpful so I’ve left it up.

This post is for #TakeTheMaskOff a campaign raising awareness about masking. I’ve been thinking a lot recently about masking and how much it affects me. It also relates to the doubts I’ve had about my diagnosis that I’ve written about them on this blog before. This post, like all my blog posts, is not trying define the experience of all autistic people. Not everyone masks and for those who do, their experience may be different. This is just my experience.

My mask was built on shame and it became such a part of me, I didn’t know it was there.

I was different from the beginning. As a baby I only lay on one side, so I looked strange for the first few years of my life. one of my ears lay flat on the side of my head and one stuck out. I sucked my two middle fingers, not my thumb like normal children. I was hyperlexic and talked early but didn’t crawl or walk for a long time and when I did walk I was clumsy. I wouldn’t go to bed until I’d seen the moon. I was cute, I was quirky, but there was something different about me. Nobody could quite put their finger on it. My mother later confessed that she thought to herself ‘Why can’t my child be normal’.

The world set about teaching me to be normal.

Sometimes the lessons came in the form of reprimands or corrections, sometimes gentle teasing, sometimes outright bullying. Sometimes they were meant lovingly, sometimes more unkindly. Sometimes the lessons weren’t overt, I’d be left out or ignored. The lessons came from everywhere, from home, from teachers, from peers, from friends’ parents.A lot of the lessons were very small, like a gentle “don’t do it like that, do it like this”. Some were larger humilitations, like bullies threatening to kill me; like being made to stand up in front of the whole school every lunch time. My sensory sensitivities made it impossible to eat school meals and I was punished for this. Sometimes I didn’t understand what I’d done wrong.

All these things added up, incrementally erasing my sense of self like erasing parts of a picture, a pixel at a time. You may not notice those missing pixels at first but gradually they add up.

I wanted to hide who I was

I’d get a heavy feeling of dread in my stomach when I realised I’d done something wrong or put my foot in it. I’d try to cover it up as much as I could, try to find explanations for my behaviour that would make people understand and not be cross, laugh or say nasty things. I did all I could to stop this from happening. I’d try to copy people and imitate their behaviour, so I didn’t get in trouble or get rejected.

When puberty came, the lessons got harder and the shame worse. I found the sensory experience of secondary school coupled with hormonal changes overwhelming. I retreated into myself, finding it hard to speak. I was bullied and isolated. I’d get home and meltdown. I did things and behaved in ways that I didn’t like. My parents believed I could control the meltdowns. They thought I was just being a difficult teenager and reacted with anger. I had no support or help. I took all the blame and all the shame.

I was convinced I was hideous and unlovable. Other children knew it, my family knew it. The shame was like a dead weight and masking was a way of papering over those shameful parts of me.

My mask was constructed of imitation and echolalia.

It was built grom things I learnt in books, magazines and TV shows. It was glued toether with fragments borrowed from other people’s personalities. I learnt to suppress my own opinions and likes and convince myself to like what others liked. As I grew older, I found the numbing effect of alcohol helped, to the extent that I felt broken and incomplete sober.

As the years went on the mask became so much a part of me that I forgot it was there. I just lived with an all pervading fear that somehow I’d be found out, that there was something dark and shameful in my soul. I had long periods of depression, I became suicidal but I carried on masking, even in psychiatrists’ offices.

Diagnosis didn’t stop me masking

When I found out I was autistic. I realised I masked. I just didn’t know how deeply my mask had become part of me.

Instead of feeling free to be myself. I subconsciously tried to adapt my mask. I didn’t realise that was what I was doing but I spent time working out how fit in with autistic people. What persona should I adopt? It was automatic for me to see myself as inadequate and to try to take on aspects of other autistic people, whether in the media or people I met. And when I failed at living up to the ideal, I felt more shame and felt the need to conceal my failings

I didn’t realise I was masking but I knew I wasn’t being completely authentic. I just had a niggling feeling I was faking being autistic. Which only fuelled more shame and doubts about my own autism. It was a painful place to be in in, knowing on one level I’m autistic but yet doubting it.

Seeing the mask

It’s only now, after the 4th anniversary of my diagnosis, that things have shifted.

This year I started to take a step outside the mask. I got involved with running a local autism group. I find it very anxiety-provoking and I’m also not sure how effective I am (being of the ‘couldn’t organise a piss-up in a brewery’ school of executive functioning). But I’m standing up and saying I’m autistic and I’m doing this, I started to accept my own autism and stop feeling the need to mask as an autistic person..</p

I read about research into how camouflaging and masking is a risk factor for self-harm and suicide for autistic people. That was my life story. Somehow, despite the fact that this finding is sad, seeing my experience, my depression, my suicidality and self-harm corroborated by research made me look deeper at how I mask and see it more clearly.

Now I’ve started accepting myself as an autistic person and not feeling shame The autistic world isn’t like the neurotypical world which often tries to hammer people into similar shaped holes. Autistic people are all different shaped, and while non-autistics may try to create a hole made of assumptions and ableism that they think autistic people should fit into, autistic people don’t fit that hole. I fit perfectly into my own autistic hole and I don’t need to feel shae because my experience is not like some other person’s

I can’t take off the mask completely. It’s been too long now. I don’t know who I am without the mask, without all the borrowed fragments of others. But I can stop it hurting so much. I don’t have to live with shame. I can make the mask more functional. Rather than hiding something shameful, it could be something that has utility and that allows me to exist in a society that is still a long way away from autism acceptance.

It will take a long time to heal the shame and learn who I really am. I can’t go back to being the innocent child who loved the moon that I once was. Maybe it will take the rest of my life. But I feel that I’m on the right road now.

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On autism, masking, hiding and acceptance

I don’t know when it started. The knowing I wasn’t good enough, the hiding my autistic self away, pushing her down.

When I was little, I was a generally a happy child. I was happiest alone creating worlds in my head, but I’d play with others if they were there. I came from a family where time spent alone, reading, running round in circles for hours or daydreaming was acceptable. I went to a small school and had friends.

But as I grew older, I felt a creeping sense of shame about who I was and being different.

Maybe it was being told off for doing something wrong when I didn’t even know I was doing something wrong. The teacher who made angry scribbles on my on my book because she said I wasn’t paying attention. The other teacher who threw my exercise book across the classroom in frustration.

Maybe it was when I was bullied for the first time by other kids They wouldn’t let me pass and threatened to hurt me. I became scared of Other Children . I wanted to hide from them.

Maybe it was the time I noticed I was alone in the school woods. My friends had gone somewhere and it bothered me for the first time that I was alone. Going in the woods was a treat but nobody wanted to play with me.

Maybe it was when I started a new school aged 9 and couldn’t make friends. Even the other social pariah wouldn’t play with me.

Maybe it was all of the above and many other small incidents long forgotten. I did know that the older I got, the harder it was. Social situations became more complex. Confusing. Other children could be friendly and then suddenly turn mean. I didn’t want people to be mean to me.

And so the hiding of my autistic self and the masking began. It wasn’t deliberate. I didn’t sit down one day and think “today I’m going to be like everyone else”. It was more a search to be accepted. A desire to be good enough.

Masking in some respects is easy. I don’t share my deepest self easily. From a young age I kept things to myself. I was stung by a bee at the age of 3 and didn’t tell anyone. My secret play worlds remained secret. It was just I gradually kept more and more of myself secret. And as I did so, I became more and more ashamed of myself.

Another new school at age 13 and more bullying made it worse.

I became almost two people. There was her. The person I was ashamed of. The person I was at home, who still played with toy cars, who lived in on an imaginary planet in her head, liked computers and trains, obsessed about obscure pop stars. Then there was socially acceptable me. The person I was in public who tried to like the pop stars everyone else liked, who tried to be indistinguishable from the others, not be a nerd.

I copied my cousins, girls at school, people on TV. They instinctively knew what to do in social situations. I didn’t but I tried to learn by imitation. I thought if I got it right, I’d be accepted.

I thought maybe if I looked right I’d be accepted. I made the rounds of the local hairdressers clutching a magazine, convinced if I looked like Suzanne from the Human League I’d be accepted. None of the hairdressers could make me look like Suzanne from the Human League.

I didn’t give up. I dyed my hair. I stuck it together with hair gel from Superdrug that turned it green. I permed it. It was the eighties. I looked like a poodle but it was quite low maintenance so I liked it.

I tried to learn to put on make-up. It ended up half way down my face. I tried to be fashionable. I’m not interested in fashion, but I was convinced that if I looked right I would be accepted.

It surprises me when people say fashion is fun. Fashion isn’t fun to me, it’s camouflage.

I often got it wrong. Other girls seemed to effortlessly get it right but I often failed. I didn’t know why one thing could be trendy and another thing, that looked almost the same, be uncool. I always unerringly picked the uncool thing. I didn’t understand why friends laughed at my outfits. I learnt how to do self-deprecating humour and laugh at myself.

As I grew older. I discovered drink helped me feel more relaxed, less anxious about myself. It turned the noise of the world down. When I drank I could go to parties and nightclubs. I don’t actually like parties and nightclubs but when I drank I did. Mainly because I could get more drink there.

I felt like a real wild child but I was just a drunk student in a tacky nightclub. More importantly, I felt I belonged with all the other drunk students. The inherent difference in me was pushed below the surface.

I thought I’d finally found the solution. Maybe this time I’d left the awkward, lonely, weird girl alone in her bedroom behind for good.

But she was still there. When I shut the door away from the world, she tried to get out. She came out in drunken meltdowns that ruined friendships and romances. I added more drink to subdue her.

I tried to run away from her. I went as far as I could. to Australia. She came with me. I moved into a party house because I thought I was a party animal and it was a disaster. The whole house turned against me because of my weirdness, because of her, because she couldn’t cope with too many people crammed into too few bedrooms and the noise of the house. I spent many hours walking around a sweltering Sydney, aimless, lonely destroyed.

I thought I could go to the end of the earth and outrun her but I couldn’t. When I came home, she was still part of me.

I didn’t give up. I kept trying to escape her. My twenties were all about running away from her. I seemed so ‘normal’ but I struggled to keep it together. I was frequently depressed and relied on drink to socialise.

It’s not surprising eventually I had a breakdown. I couldn’t go on. I think my autistic self shut down completely. She couldn’t go on sustaining all the fakery. It lead to bleak times, severe depression and various psychiatric diagnoses.

But all the ensuing excavation of my deepest self to find the cause of my illness did not lead to the discovery of my autism.

She laid so deeply buried, it did not occur to me to tell the professionals of her existence. Although the mask was off in that I could not control my behaviour and act normal, I was not able to understand the reason for it and it was put down to personality disorder and depression. I took refuge in an interest but they didn’t know how deep it went. I also kept drinking.

Eventually drinking got too far out of control, became an addiction. Sweats, shakes, a bottle of vodka in my bag, alcohol for breakfast. I wanted to drink all the time and when I wasn’t drinking I was planning my next drink. I am glad and I am lucky that I stopped drinking. It was a horrible life.

But when I stopped, I lost the thing that kept my mask together. All the things I had thought about myself were wrong.

For example, I thought I liked parties. I didn’t. I liked drinking at parties.

When I think of going to a party and having a drink, I am filled with anticipation. I imagine a cold bottle of wine, condensation on the outside, the pop of the cork, the glug glug glug as it is poured, the blessed relief of the first taste, the euphoria, the slipping into oblivion, the not caring.

When I think of going to a party and not drinking. I feel dread. The event hangs over me like a guillotine. I’ll stand on the edge of a laughing group, pretending I get the joke. I’ll hide in the toilet multiple times to escape. I’ll make tortured conversation and just really really want to be at home. The best part of a party is coming home afterwards knowing it’s over.

I thought I had social skills. I was horrified to find that, without alcohol, my social skills had not improved since my teen years. I sat in groups tongue tied. I couldn’t follow banter at work. I tried to make jokes and they fell flat on their face. I really did not know what to say or what to do socially. I hadn’t learnt a thing, I’d just let drink take care of it for me.

The world is loud and confusing. Drinking turned it down and made it less confusing. Without it, I felt adrift.

But one thing was certain.

I couldn’t run away from myself any more. I had to stop and face her. Face myself.

And a strange thing happened. I was diagnosed with Asperger’s. That was not what I was expecting at all. It became an interest. It’s my habit to read so I read and read about it and in my reading, I began to discover myself. Not just the parts of myself I or others had deemed socially acceptable or the parts that somebody had labelled diseased but all of myself.

I looked at myself, at her and she wasn’t something scary or bad.

My diagnosis helped my understand myself and take the first tentative steps towards accepting myself. I started to see my internal self as an essential part of myself not as her. I may have learnt to look neurotypical but I never was.

In believing what others said about me, rejecting the core of myself and seeing my autistic self as something to run from, I did myself huge psychological damage. It’s no wonder I’ve spent so long in the psychiatric system. No wonder that I needed to drink.

These days I don’t run. It turns out there was nothing frightening to run from.

I would like to say I have put the mask down completely, but I haven’t. I still haven’t figured out how to get the balance right between necessary masking, because I need to earn a living, and damaging hiding. After so long it has become a habit.

I still dye my hair and try to look smart. But even if I did find a hairdresser who make me look like Suzanne from the Human League or even if I did finally understand fashion, I know it wouldn’t make me neurotypical. I wouldn’t automatically be accepted. I’m OK with that.

Some days I struggle with social situations and I remember I’m autistic and forgive myself. On worse days, I still wish I was normal, whatever that is and feel frustrated and angry at myself and my limitations. Those are the days I’m vulnerable to drinking.

But sometimes, usually when I seek out solitude in the countryside or at home, I feel comfortable and accepting of who I am, without the mask. I’m content with no need to need to run away or hide myself. And those are the days when I am at peace.