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.