This summer, there is a campaign on Twitter, Facebook and Instagram (and possibly elsewhere) called #TakeTheMaskOff. It started on 23rd July and as far as I can tell, within my Autistic bubble, it’s taken social media by storm.
Autistic people often mask. To me that means we try to pass as neurotypical. We mimic and approximate and follow what we see as neurotypical behaviour, so that we can fit in to the society that we live in without being criticised or mocked. As far as I can tell, many of us do it without understanding why we’re doing the things we do – we just copy what our neurotypical family, teachers, friends and colleagues do – or do what they tell us is appropriate, and stifle behaviour that they don’t think is appropriate.
This masking comes at a huge cost to mental and physical health. So the campaign to encourage autistic people to take their masks off, is one of encouraging better health in autistic people and more acceptance from the non-autistic people around us. If you want to know more about this campaign and the background to it, check out this post by The Autistic Advocate – #TakeTheMaskOff, or have a look at the posts under this hashtag on twitter.
(And now for the disclaimer – this is my story, and mine alone. All autistic people are different – if you’ve met one autistic person, you’ve met one autistic person).
I felt very enthusiastic about this campaign when I heard about it. And I still do – but I immediately hit a snag. I have obviously been autistic for all of my life, but I had absolutely no idea of this until I was 45, and I was only diagnosed nearly a year ago at the age of 47. I’m older, I’m female, I’m of higher than average intellect in some ways in which such things are measured (way below in others, as you’d know if you’ve ever seen me try to cook), and I have a late diagnosis. So that means that I have been masking for all of my life. I started adjusting my behaviour following disapproval, with no clear idea of why, probably before I could talk. Certainly before my own personality was even half-way developed. I continued to do that for all of my life, with greater and greater efficiency and success. So now, at 48 years old, I don’t really know where my mask ends and I begin.
For most of my life I’ve not known who I really am, what I really want from life, what I want to do, who I want to become, what my true dreams and aspirations are. It’s a horrific, terrifying sensation to feel that you don’t exist, that you have no core. To feel invisible. Now at least I know why – all of that energy I’ve had to put into masking has taken me away from myself.
I tweeted a tweet about exactly this a few days ago, saying that I don’t know how to take the mask off, and by my tiny standards, it went viral. 92 likes and 19 replies to date, and some of the replies have sparked entire threads, and people have followed me and I’ve followed many of them back. Given that I have only 105 followers, I think that’s pretty good going.
Quite a few of the replies were people saying, ‘Yes, that applies to me as well, I know what you mean’. And I feel I may have tapped into something here. There are many autistic people I’m sure, who know exactly what their autistic traits are, and what they would like to do but feel they have to hide to be accepted. Those people have their own struggles, and being able to identify the mask and take it off certainly comes with risks and probably unintended consequences. I really hope that some of those consequences are positive ones.
For myself, I’m following a different path. I feel that trying to identify what bits of me are masking, copying, imitating, and what bits are the real me underneath, is a part of self-development, and just like any other learning curve, it’s taking work and investigation and experimentation. Some things I know already, some are new to me, some are baffling, some feel unlikely and possibly unconnected with autism altogether. And some are unexpected sources of happiness.
Some of what I have learned:
I have autistic obsessions, or areas of extreme and focused interest and enthusiasm. The two that I have had for longest are Komodo Dragons and oil rigs (specifically, looking at real oil rigs in real life either from the shore or once, from a ferry. It’s so exciting! No I have no idea why). I mean I like Star Trek (binge watching all of DS9 right now), and obviously I try to watch every Marvel Cinematic Universe film as it comes out – I’m sure they’d take my Autistic membership card away if I didn’t:-) But if I feel upset or in need of comfort and have a little free time, I’ll google Komodo Dragons just to cheer myself up.
I have learned how to stim more than I ever did. I always did do the thing with tracing patterns with my eyes – I didn’t know until very recently that this was a form of stimming (thanks Alis!) but apparently it is. But I’ve also realised that certain types of flapping, or waving my arms and hands around, in time to music especially but not always, look absolutely ridiculous to me but fill me with energy and happiness. Doing that just lifts my heart. I now look at the more obvious stimming that my children do in a totally different light.
I love being social and sociable, but it uses up loads of energy. After a successful social evening (sometimes during one), I start to flag, and I feel as if I’ve run a marathon. It’s great – it’s good for me – it increases my feel good hormones probably, and I really enjoy it – but it’s exhausting. And like physical exercise, the more I do, the more I can cope with, as long as I don’t totally overdo it.
I can do eye contact or I can concentrate – I can’t do both at the same time:-) At least, not reliably. I do stare off into space sometimes, but equally often I stare fixedly at the person I’m talking to. I try to be careful about the staring because I think it can be disconcerting to the person on the other end of it. Some people have lovely, warm, comfortable eye contact like a hug (quite rare) and others have eye contact that feels to me like an electric shock. And there is no relation between how I feel about that person and how their eye contact feels – I can be extremely fond of and trusting of the people whose eye contact feels fairly unpleasant.
The same is true of physical touch. Sometimes it feels like I’ve been hit quite hard, even when the touch is quite gentle. I put up with it because I know it’s usually a gesture of affection, and I appreciate the sentiment, but it does use up some of my teaspoons (or possibly just spoons – in our house we’ve always said teaspoons but I think the original blog post about internal resource and invisible disabilities referred to spoons. My children name their favourite teaspoons so that’s probably why – yeah, never mind:-)
How exactly am I supposed to find out which bits are me and which are masks? A couple of people on Twitter suggested I get drunk to find out, on the basis that in vino veritas. Obviously not roaring drunk, but relaxed and mellow perhaps. I have a very low tolerance to alcohol, but I know from experience that after a couple of drinks I get joyful and affectionate and positive. I see the good in everyone and want everyone to know that they are wonderful and special. So I’ll happily claim that as part of my authentic self.
But I can’t spend all of my life drunk:-) I guess that catching myself when I feel uncomfortable, learning to identify when I feel inauthentic and trying to track the root cause, and continual observation of myself and my feelings, that has to be the way forward.
This time last year I was midway through accepting that I was probably autistic, and it revolutionised my life and my view of myself. I don’t think the core of myself has changed since then, but my new sense of self-acceptance and of identity have stripped away so much guilt and confusion that my life is completely different now. I have a feeling that examining my mask, and finding out what is really underneath is going to be just as much of a sea change in my life, and I’m quite sure that this time next year my life will be unimaginably different again.
I am interested to know if anyone reading this blog has similar experiences with many years of masking starting very young, and trouble knowing how to take the mask off. If you do, please do tell me about it in the comments.