*Trigger warning – Description of violent intrusive thoughts in second to last paragraph*
This summer I have been taking part in the #TakeTheMaskOff hashtag campaign – a campaign through which autistic people are sharing our experiences of masking. Masking, for those not initiated into autistic culture, for autistics means covering up different parts of ourselves that we feel or learn are socially unacceptable. Each week has a different topic and this week the topic is the effect masking has on mental health. You can check out my previous entries on my Facebook page here, and a more diverse collection of entries can be found on The Autistic Advocate Facebook page, here.
I have felt daunted to address this week’s topic, because masking has had such a huge effect on my mental health… No, not my “mental health”, that undermines it… Rather, masking has completely changed the course of my life from what it could have been. Needing to mask, and then deciding not to mask (before I knew I am autistic and that that is what it is called), and then actually putting that into practice (a process that is much longer and more layered than I ever anticipated!) – how can I sum up the majority of a thirty three year lifespan in one piece of writing? So I’m daunted, going into this, but I’ll try, I’ll try to write about what this means to me. And I’ll try to be really open and honest about the impacts, and that will mean sharing some stuff I feel very vulnerable about, that I am still working on. It’s easier to share the stuff that’s processed, but the honest truth is that at the moment I am dealing with something mental health wise that shocks me by displaying so vividly how absolutely I believe that being myself is dangerous. And that issue is something that’s completely ongoing, not fixed, and at the moment I honestly feel a bit despondent about it ever being fixed. So to be honest about that issue is quite a scary concept.
But this is also a story of triumph, to me, because I currently feel more able to be myself – and accepted for myself, which is the crucial part really – than I ever have done before, and it’s something I’ve worked very, very hard at, but it’s also something I’ve largely been able to do because of my privileges as a reasonably wealthy person. (I don’t mean wealthy as in big house and fancy car, but wealthy as in being able to put down a deposit on a three bed semi and forego working for the sake of my health.) I am privileged because I was born into a family with some money, and that needs naming. As a person with privilege, I feel it is my responsibility and honour to share my story; it gives me freedom to share openly.
But I’ll start at the beginning. Ish. I can’t remember when I started to feel that I am in myself unacceptable. I never remember feeling good about myself. From right when I was very little, I wished that noise wasn’t so painful and frightening for me, that food didn’t scare me, that I could just fit in and be easy.
As I got older and learnt to read, I started to learn voraciously. The first topic of interest that stands out in my memory is the Tudors and Stuart era. Aged about 8, I read absolutely everything I could get my hands on about it, including adult history books. When I was in Year Four at school, we studied the Tudors, and I was SO excited about it. Unfortunately it was then that I learnt that the education system is not set up to support women with my kind of brain, as my teacher – hard as she obviously tried to support me – clearly had no idea what to do with this little girl who knew a great deal more about the Tudors than she did. Instead of enjoying the experience and being able to share my knowledge, I ended up feeling ashamed that I knew so much more about it than those around me, and that I was making my teacher’s life unnecessarily hard.
About this time my parents separated. Shortly afterwards we moved, and I started a new school at the beginning of Year Six. That was my first experience of having to transfer cultures, as it were, and the way the children behaved at my new school completely baffled me. The dynamics and social expectations demanded of me were very different to my previous school. I couldn’t make head or tail of it, and was subsequently excluded and picked on, very aware that I was the lowest in the class pecking order. So I started seeking to stay home by inventing physical illnesses. I didn’t know how to express it, or even understand it at the time, but I was indeed very poorly, my anxiety was so great and sense of self worth so low that I couldn’t focus, learn or sleep. However, I thought I was lying about needing time off school, and that shame and identity as a “liar” is something that has haunted me ever since.
I started to become very anxious about speaking up in class and find I was unable to do so. At school, I didn’t have any way to express my positives – my instinctive learning ability, for example – and my learning experience became centred around feeling that I don’t fit in, and desperately wishing I could. As a girl, there was not a place, socially, for me to be myself. It is not OK for little girls to be too clever. Just be clever enough, in the right ways, to get the grades adults want. And no more than that.
I went to secondary school and there felt lost in a crowd, overwhelmed by chaos and noise. I didn’t matter to anyone there, my teachers changed so often throughout the day that no strong links could develop with them in the way they did in primary. My problems speaking up in class – answering questions and so on – became worse as school went on. I would know the answer to things – easily, as the work was, in all honesty, often completely unchallenging – but I would be unable to express it verbally, and flush very red in the process, drawing more attention. Teachers would complain that I could chat to my friends in class but never contributed to the lesson, I felt like such a failure.
I started, during my time at secondary school, to knowingly model how I behaved and dressed on others. I would study the popular girls for hours, wondering how they did it. How did they all know how to do their hair? How did they know the right things to wear? To be interested in? However, during my time at school, I wasn’t very good at masking (except by remaining quiet), and I felt very ostracised.
I then went to a boarding school at 16, it was a complete disaster. With the support of my dad, I decided to leave and go and live with my Grandad in Cambridge. But we were at cross purposes about what I should do there. Dad expected me to study. But as far as I was concerned, I was well aware that I was academically clever, and it wasn’t something I wanted to encourage at all. In fact the complete opposite. From my point of view, I went to Cambridge to learn how to be social, how to fit in.
It was the first time in my life that I’d really been free to choose who I am – what I wore, what I did, my interests – and Grandad was great at creating that space to explore. At home, I had felt enormous pressure to be interested in culture, politics, and my formal education – all things that I wanted to distance myself from, in my desire to fit in. For my safety. I used to lie awake at night worrying about my inability to relate to others and particularly to the opposite sex, about never finding anyone to love me, about how I would survive as an adult without a support system. I didn’t know how to live, how to keep myself alive. It was imperative to my survival at that time that I learnt to mask and fit in.
And I was very good at masking, at becoming a social butterfly, once I put my mind to it and had the freedom to pursue the self expression I needed. I would angst a great deal over clothes, hair, makeup, music – because I had to choose a persona that reflected what I perceived to be the norm, not my own tastes. But I didn’t even know what my tastes were by that point. I didn’t know anything positive about myself. I expended all my energy in creating this person who spoke differently than came naturally to me, who thought about different things than I do, who did different things that I would. It was very hard, and I put myself in a lot of risky situations, through trying to be this party girl. I struggled to be alone for my whole seven years living in Cambridge, I couldn’t be with my self, with my thoughts. There was too much to run away from.
But, in a lot of ways, my persona wasn’t a lie. Leaving home enabled me to explore parts of myself that had been previously suppressed. I am in fact a person with immense social interest, and I have a strong need for social acceptance – but I’d never had the confidence to explore that. Pretending to be someone else, I learnt skills and grew in confidence in a way that stays with me, and those are experiences I wouldn’t have had otherwise. I found I loved dancing, and feeling part of a community – a network. The love of community and desire to build my life around it is something that’s stayed with me.
For the first time in my life, when I was being this other person, I could have fun. I could be lighthearted. I had grown up surrounded by serious subjects at home, state of the world, is-the-apocalypse-imminent-type-stuff. I needed to let my hair down. To explore the wider world.
Living in Cambridge remains some of my fondest, happiest memories, a time of life when I look back on feeling very alive. I felt loved. People actively sought me out for the first time and it was very healing. I learnt about this part of me that is a leader, that fosters community, that builds deep connections. A person who loves deeply and passionately.
But at the same time, I was exhausted all the time, and terrified. I didn’t know anything different to feeling terrified all the time, so I never questioned that, never realised it was abnormal. The terror was literally that of not feeling sure of my survival. Of being exposed and my life falling apart. Never being able to look ahead, to build for a future. It was day to day, in the moment living. And because I was divorced from the intense, thoughtful, questioning, academic learner part of myself, I couldn’t study. I didn’t understand how to study, because I didn’t have my own voice with which to write essays, and there was no guide to copy.
When I did start a serious relationship, something I had desperately wanted, I began to have to face my problems. He was an intense, thoughtful person, and it made me feel deeply uncomfortable to be with him. I loved him, but he exposed too much of myself. I didn’t look normal enough with him. He made me cringe by being himself. But I couldn’t break up with him because of that. I found it very hard to reconcile. I look back and am ashamed of myself, that I felt that way, that I was so completely self centred. I wasn’t a “nice” person, during this time of my life.
Then we, as a couple, had a series of traumatic events that shook us deeply. I was ill, I believe now it was exhaustion and physical overload from masking in the form of ME, but at the time, doctors were concerned I might have a brain tumour, or multiple sclerosis. That was the extent the exhaustion had got to. I had to have an MRI, it was terrifying. We then lost my granny shortly afterwards, and then his parents one after the other in quick succession. And I started to learn about my infertility conditions (a balanced translocation and PCOS). I possibly had a very early miscarriage. All together, it was far too much for the shaky foundation I lived on. I needed mental resources to get through those things that I didn’t have.
So basically, life started to fall apart completely. My sanity was shot. I began imagining things that weren’t there, living in a state of intense paranoia and a period of mild psychosis. I developed an eating and exercise disorder to try and maintain a semblance of control. I started to have some pretty epic meltdowns, losing my temper without warning, and the scary thing was, it felt good, like something I’d never allowed to come out. I became obsessed with having throat cancer. I couldn’t continue uni, so I left and started a job as a teaching assistant – which was a wonderful experience, actually, but I couldn’t maintain the input needed and was having constant crashes. I started to cheat on my other half, and behave in a very unsafe way – looking for some meaning, some sense of self.
At that point, I left my partner, and shortly afterwards I met my now-husband. Three months after we met, we went on holiday, and when we got back, I couldn’t get out of bed, I couldn’t stop crying. I was 23.
I wouldn’t learn I am autistic for another 7 years, but it was at that point that the journey back to my self started. At that moment I decided to stop living as someone else, and embrace myself, whoever that was. I had lost touch with my innermost being; with any idea of what my true hopes, dreams, likes and dislikes are. I remember a few months after my breakdown, sitting down to a table, trying to think of things I remembered about myself from when I had been a child. And I remembered I liked to write. So I got out a pen, and paper. And I just sat there. With this pen and the blank page. I didn’t have a single word to write on it. And to me, that encapsulates how completely I had lost myself. Because I am a writer – that’s how I express myself, it’s my first language. It comes much more naturally than speaking. To not be able to write… It was truly having no idea who I am.
But over the years since, this new (old) self is tentatively emerging. Something that is a combination of all the various parts of me. Something that is true, and unique, and authentic. It’s slow, and it’s painful, and it’s taken much, much longer than I expected. But it’s been the best thing I’ve ever done. Without this work, I could only have shown my children that they are unable to be themselves. Hopefully what I’ve done has meant I am able to support them and help them grow in ways I would never have been able to before. It often concerns me, to think what would have become of me, had I not met my husband. Where would I be, now? Would I be, now? If I had become a parent, what would have become of my children? For all the time and the pain it has cost me, finding myself is the best, the only thing I could have done. It’s the most wonderful gift.
But what I mentioned earlier – about the mental health issues I live with? Since I first created a platform for sharing my writing, a year ago now, first very tentatively and recently with a self assurance I didn’t know possible, I have started to experience intrusive thoughts that I will be burnt alive. Actually, to be precise, it’s like a voice within my thoughts, part of my thoughts, that says “they will torture you and burn you alive”. It started when my period returned after my daughter was born, and no doubt there’s a strong hormonal element. However, to share my writing is unmasking to the most painful degree, for me. It is what I am made for but it is also my most vulnerable area. To put my writing out there is like exposing my most vulnerable, inner self. And from the intrusive thoughts, I can only assume that I fundamentally feel that being myself is very dangerous. Very unsafe. Hormones or no hormones, I would not be living with these thoughts if there was not a solid psychological basis of experience for them to grow upon.
So for me, in this past year, I have unmasked to an extent I didn’t know possible. It has brought great rewards – I am more myself in all areas of my life now. I gave a little sermon at church. Life is pretty amazing really. But it comes with this huge cost. And this huge cost is the constant, wearing, worrying fear that I will suffer horribly, just for being who I am. That that is the only possible outcome. It is so ingrained, I try to challenge and shift this belief all the time, but for the time being, it’s not going anywhere. And it’s taking me to places in my memory I’d rather not go, buried far, far deep in my past. Because this story of mine isn’t just a story of autism. It’s a story of autism, and all the other traumatic life events that autistic people are more at risk for – because as children we are sometimes seen as difficult, as challenging, as less than human. And it’s a story of the ways those experiences change us. Of the feeling of safety they take away.