Although it’s only recently I’ve been hearing the term masking — the first time I can remember was in conversation with my very dear friend Patricia — I didn’t need to have it explained.
Putting on the metaphorical mask, adopting that persona, playing that role…
Oh yes, I know what that’s all about. Metaphors might be intangible but they are real. My whole life was an attempt to do what people around me wanted. To be who they wanted and expected me to be. The perfect child, the model student, the star employee, the ideal spouse.
In any human social group there is pressure to fit in, to conform so that you are accepted as one of the group. Most people adapt their behaviour depending on where they are or who they’re with, but these aren’t masks: they’re fine-tuning. It’s like adjusting the volume on the TV but keeping it tuned to the same channel.
Masking isn’t like that. Masking is attempting to put on a whole new persona. It’s method acting where you become the part you’re playing. Your character is authored by the people around you, it’s not your own creation. You’re dancing to somebody else’s tune.
While it can be very convincing — some autistic people are talented professional actors — when you’re filtering every word, every gesture, every reaction through that mask it becomes exhausting. And you don’t get to exit stage left and nip backstage for a breather. You’re in character almost every waking moment.
One danger of adopting a character so completely is that you can lose touch with yourself. You become so accustomed to acting the part that you blur the boundaries between real and pretend as you strive to become the mask. It’s a long road back from that place.
Being something, someone, that you’re not carries a price. It causes mental stress as you work to suppress your instinctive behaviours and reactions in favour of the ones that allow you to fit in. The threats and fear that drive the process — fear of failure, of ridicule or abusive harm — are very real and cause harm in the medium to long term.
This driving force is powerful: it has to be to push us so hard and so far. And the result — fitting in, appearing to be like our peers — might sound like a reasonable goal. It’s the aim of interventions like ABA and other behaviourism-based therapies. But regardless of whether it’s driven by a practitioner or by peer pressure it can cause deep, lasting trauma.
I didn’t only grow up autistic (even if I wasn’t aware of the fact): I also grew up transgender. To me, the parallels with masking as an autistic person are very clear: I, an autistic female, was expected to appear to be a neurotypical male.
I can’t easily separate the two aspects of my being: my gender and my neurotype. The teasing and bullying I went through was because I didn’t act NT enough or male enough to match peer expectations. I tried. I watched people around me, studied them, tried to copy how they acted. Constructed my mask to hide behind.
Being autistic isn’t about the list of symptoms in DSM or ICD – that’s just the medical establishment’s way of drawing neat lines around a bunch of us and sticking a label on the resulting box.
Being autistic is how I experience the world and react to it. That might cause certain observable effects that get written down and turned into a diagnosis, but living it is something that can’t be captured in words because an autistic frame of reference is different from a neurotypical one.
Autistic people can often recognise each other. We pick up on signs and cues that exist below the level of conscious awareness: we feel that pull of recognition when we see ourselves reflected in others. Because we can relate to each other through shared experiences, our similar responses to situations, we often feel more comfortable and at ease in each other’s company.
Recognising my own reflection, seeing myself in others and having them see themselves in me, is very familiar to me from meeting other autistics. But it’s equally applicable to my gender.
For about as long as I can remember it was other girls and women I saw as mirrors of myself. I could never relate strongly to male peers: I was never able to see myself as belonging there.
Just as being autistic isn’t a list of symptoms from the diagnostic manual, so being a woman isn’t a list of attributes either. There are such things as gender roles and traits, but they are a consequence of gender, not its cause or essence.
I’m not autistic because I struggle in social situations or because I was echolalic and frustratingly literal as a child: that is inverting cause and effect. I am autistic whether or not the signs are visible to others. I’m just as autistic when I’m chatting to a colleague at work as when I dance and flap.
Likewise, I’m not a woman because I have breasts and hips, or because I cry over emotional movies, or because I wear dresses sometimes. Those don’t define my gender, they are simply an expression of it. I was just as female before my body started to develop, I’m just as female in jeans and tee-shirt toting a toolbox.
Neither my neurotype nor my gender are things I had any choice about: they’re just the way I am. Trying to force me to be something or someone I’m not — conversion therapy by any other name — doesn’t work and causes me harm. I can act out a role under duress with a certain degree of success, but it takes a toll on me.
Ultimately I had to take off the mask. The strain of performing constantly broke me. Not all the damage it did can ever be healed: there is some baggage I will always carry with me.
But my burden is small compared to what it used to be, my steps are light. And the tune I dance to is my own.
I’d thought about leaving so many times. Going back through some old posts last night, even back to when I first started blogging, it was abundantly clear to me that I had been feeling depressed, lonely and trapped for years.
It was something I discussed occasionally with people I trusted. Not that I had many of those. But I was always more scared by the uncertainty of the unknown than I was of remaining somewhere that didn’t feel like a home. My fears always drove me back.
I tried. But it’s hard when the love you once had has been replaced by fear. Too many angry outbursts, too many times when my needs were dismissed, too many times when my anxiety reached overload. I tried to explain but when I never knew how what I said would be received it was impossible to be completely open and candid.
Even when I did manage to speak up, the import of what I was saying became lost in translation. These weren’t shared feelings or experiences; I might as well have been speaking a foreign language. Situations where my daughter or neurodivergent friends would grasp it immediately, not need it to be spelled out in detail.
In the end it had become obvious that living in that place with that person was harming me. Day by day my mental health was declining with anxiety and depression making it difficult to function. I was struggling with work, I was struggling with self care. Well, not just struggling: I was failing.
I knew the signs. I’d been through similar times before although every time it happened it brought me further down, hurt me more, killed another piece of my soul. So this time I asked for help. I went to my doctor, I referred myself for counselling. And I talked at length with my daughter.
At my second counselling session I all but broke down in tears as I described how I felt, how a steady drip, drip, drip of teasing, controlling behaviour, threats (even when later retracted) and aggressive actions had built up to the point where I didn’t feel safe. It doesn’t matter what the motivation was, whether harm was intended: it was emotional abuse and it did cause harm.
I explained how I was afraid of losing my job because my mind was in too much turmoil to focus. I explained how every time I tried to think of what I needed to do to get away I quickly became overwhelmed with the magnitude of it all.
My counsellor was brilliant. She helped me organise my thoughts so that right in the middle was my goal, “To Get Out” and around it were the factors that I needed to address.
I came out of there feeling enabled, that this was something I could achieve. I phoned my boss at work and explained everything (and I mean everything) to him. Because I was that anxious about it I came straight out and asked him if I still had a job to get back to: he reassured me. I felt so much better after that.
In conjunction with my doctor I worked out a schedule that would get me back to working regularly, and my boss was very supportive, saying that I should do what I had to do, take as much time as I needed, and asking if there was anything I needed from him or the company.
So, knowing my job was secure I went to my bank to see about taking out a loan for setting up a new home, which went through without a hitch giving me the funds I needed to cover fees and buying furniture.
My daughter helped me look for a new place, and we made a shortlist. I prepared myself and managed to phone up and make appointments with the letting agents to view two of them, the first on the very next day which was a Saturday. To cut a long story short we both loved the first place we looked at and I started the process of securing the lease.
Just two weeks after that viewing I got the keys and moved in to the place I’m sitting in now, a month later. My home. And it really does feel like home. It’s a lovely flat in a beautiful location, but more than that it is a nurturing environment where I feel comfortable and safe.
To borrow the most apt of phrases, it is as if I have come through an unseen metaphorical door. As if I escaped from a cage to live in freedom. My counsellor was in shock at the speed of the change in me: she had never before seen somebody go from tears and hopelessness in one session to joy and optimism in the next.
I’m not the kind of person who worries that it might all be a dream and on waking I’d be back to the harmful existence I had before. I know this is real, that this is my new life. It feels like a rebirth, even more so than my gender transition. I’ve broken the shell that confined me, emerged from the egg and I’m stretching my wings.
I’ve said before that I never managed to live independently. I’m not independent now. Oh, I can feed and wash and clothe myself, and I can do the things that need doing around my home. But I also have a network of friends who I can turn to if I need support. I live by myself but I am not alone.
My friends on Facebook and the people I work with could see how happy I was when I got out of the situation I was living in: a relationship that was ultimately toxic and slowly killing me. I got my drive back, my motivation. I started to enjoy working again. I got up in the mornings feeling ready for the day.
And then, a week ago today, I was sitting here. Well, actually sitting and feeling restless, then getting up and pacing, then trying to sit again. My thoughts going round and round: should I? Should I not? A dilemma: do I tell someone how I feel? Is that fair to them if they don’t feel the same way? Might I ruin a friendship? Could it even work?
I talked to my daughter. I talked to a dear friend. I knew what I wanted to do, but I needed to work up the courage to take that chance. The emotions were so powerful that I was overwhelmed. But in the end I sent my message.
And then I waited. Minutes have never passed so slowly, a lifetime between each tick of the clock. They responded! This person I have fallen so much in love with loves me too!!! And so I am flying, lifted high by the joy of love.
Two people who felt some spark between them, who are both starting to grow and learn who they can be at a point in their lives when that had no longer seemed possible. It’s a wonderful experience to be sure, but how much better it is, how much more meaningful and joyful when there is somebody with whom to share the journey.
Yesterday evening (UK time) I posted a status on Facebook where I set out how I was feeling due to depression and anxiety.
Just venting here.
I’m exhausted. My anxiety keeps flaring up with no obvious triggers, the depression is with me more and more. I’m getting seriously eye-rollingly sick of feeling like this so much of the time.
I’ve got some seriously strong urges:
– To run away to old, familiar places.
– To lock myself in somewhere safe, curl up in the fetal position and stay there.
– To just sit here and cry.
I’m feeling kind of trapped. I feel like I’m failing. I’ve not got the strength left to keep on fulfilling my responsibilities. But there’s no escape, no respite. I don’t want to play any more but the merry-go-round won’t stop and I can’t get off.
It wasn’t generally visible: I restricted it to people I feel safe sharing more sensitive, personal things with. And, typically, I worried that it might have been attention-seeking.
I had not slept well all week; I somehow unproductively scraped through a day’s work with the assistance of much music, and was feeling enervated and pretty hopeless. Again. I think that it wasn’t so much attention I wanted as just a little acknowledgement. A bit of solidarity to help me feel less isolated.
I never used to reach out like this. I would keep it all in and try to handle it on my own. Well, I was prepared to do that this time too: I was seriously weighing up the pros and cons of self-harm. The knife is still where I put it, within easy reach. I didn’t need it in the end.
Reaching out worked. I never used to have any kind of network, any group of friends I could turn to for support when I was struggling. In recent years this has been getting steadily better. I still feel a reluctance to impose the burden of my feelings on anybody. But they are a compassionate bunch and what I received was caring and supportive.
They helped me reach the point where I could make an important decision: to visit my brother. It was something my daughter and I had talked about. We both feel a connection to that part of the country, a link to happy times in the past. In a way this really is fulfilling one of the urges I felt: running away to an old, familiar place.
I phoned my brother, checked when he would be around, and then organised what dates my daughter and I could manage. Suddenly I had an escape, the promise of some respite, and I started feeling positive. I messaged one of my best friends to share the news: we ended up chatting for hours, well into the night!
I slept well, cuddling my plush toy penguin as usual, and woke up an hour before my alarm feeling better than I had for ages. Before lunch the time off work was booked, as was the hotel. I can’t deny I’m feeling incredibly excited about the trip.
More than anything I am amazed by how much different I feel just within 24 hours. To go from despair bleak enough to make cutting myself seem an attractive option, to this hugely positive feeling of anticipation and excitement. I wish I could bottle the feeling and save it for the next time.
I know I will feel down again, the depression is always there in the background. It’s not a case of, “Hello darkness, my old friend.” Circumstances affect my mood: it swings between highs and lows. But the highs don’t shine a beacon of hope that is visible from the depths, and the lows don’t drag me down when I’m soaring. All I can do is live in the moment and respond to it in whatever way I am able.
But one thing I have definitely resolved to do is to make time to keep in touch with my friends and, as much as I am able, to go and meet them, spend time with them. They are well worth the effort.