#i feel like it's impossible for me to be loved while fully unmasking my autism and adhd. i just feel really unlovable.

[thetragiclown]

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[autisticunmasked360]

360 Behind The Scenes: An Autistic Unmasked

Two months ago I received an official diagnosis of Autism Spectrum Disorder (amongst a couple of old three-letter friends in the DSM that I’ve known awhile) after summoning the courage to pursue an assessment. Asking anyone to deliberately stick any kind of label on me is not something that I would ordinarily endorse for myself (BUT each to their own) and it was the (unofficial) primary basis on which I was advised against an assessment in the past. I’m also not one to purposefully seek or care for an itemised breakdown of how the majority and ‘normative’ part of the human population would regard and classify my nature and behaviours. I am, however, a scientist who continuously looks to understand herself and the world around her. The truth is that once I suspected I might meet the diagnostic criteria for ASD, it felt somehow dishonest or irresponsible to go along ignoring it and pretending I could just go through life in more or less the same way as anyone else (even though I already had been for over a quarter century). More importantly, it felt more restrictive and discriminatory to myself to continue on assumptions rather than try for a sound answer. One thing I do know for sure is how much my brain loves certainty/clarity (or the closest you can really get)! Thus, I did the activities and questionnaires etc. and there it was: a shiny new acronym for something that has been a part of me from the beginning.

I’d tried to rehearse my reaction the way I always rehearse every little exchange, from important requests like asking someone for help or making an appointment to relatively inconsequential matters such as a simple good morning pleasantry or ordering food in the drive-thru. I just know I can’t always rely on spontaneous verbalisation to come through for me in the moment and that’s my solution. How was I to know it’s common to a recognised ‘disorder’ and not something other people do because they can? In the end it made no difference because he told me sooner than I had anticipated 😅 I nodded, I smiled, I indicated that I understood and was ok, I left... and in probably less than a day, as one might fully expect, my brain took up a doubtful resistance 🤦🏼‍♀️ that familiar narrative that surely had nothing to do with the reality whatsoever, but is simply my mind’s overly rigorous screening system charged with achieving the maximum certainty possible. Despite the assessment being an idea from my own head, it wanted to be REALLY SURE that the outcome was definitively conclusive. After all, if no one else in almost 30 years had ever considered this and one (seemingly highly credible) person had even rejected the notion, then I needed to be EXTRA convinced that it was legitimate. Was I sure in all my responses? Could there have been something relevant that I didn’t mention (in the PAGES of unrequested notes and long-winded explanations I’d provided on the off chance my verbal skills failed me)? What if something unusual happened that day to throw me off and skew a test? 🤔

I persevered through all these (hardly novel) mental gymnastics until I reached a new (though loosely related) line of wondering: how could there be something so ingrained in who I am that has never been truly seen or acknowledged by another human being? Does nobody on this Earth really know who I am? It was this, more than anything, that left me unsettled and distressed by it all. I’d been partially isolated the whole time, but I’d never felt it at all until this point. I’d never felt invisible and I’d never wished to be as so many other kids do for their own various reasons. In fact, the only thing I’d ever clearly longed for in my whole life was one person that would walk through life beside me, with them as they are and I as I am, so that I could share. I’m an older sister and the birth of my sibling was and forever will be the best thing that has ever happened to me. I just want one person who can and will meet me where I am and journey onwards together. Suddenly this seemed more exceedingly ambitious than it ever had before. Difficult? Obviously. Monumental? Potentially. Impossible? I don’t know.

It probably seems counterintuitive that a desire for connection was arguably one of my biggest worries around the ASD diagnosis when much of the diagnostic questioning and criteria implies that I’d decline social engagement as much as possible and struggle on occasions where it cannot be avoided. It’s still true that I really don’t feel comfortable mixing in groups or large gatherings of people. I don’t care for small talk in the slightest and genuinely struggle at times to comprehend what actual value it can offer to anyone. At the same time, I have more thoughts and feelings and ideas than I can possibly contain and when I occasionally see something in another person that is recognisable, that resonates with what my soul knows as ‘home’, then my first instinct is to speak every truth in my consciousness and sing every note in my melody until nothing is left unexplored. I don’t want to be lost from the world one day without ever having truly touched anything or anyone and that’s nothing to do with being autistic or otherwise.

To that end, I’ve come up with a personal anti-masking initiative. Masking, as best I can explain it, is where a person makes a sustained, concerted effort to conceal their autistic traits and behaviours to get by in the immediate situation. I realise that this has the potential to make it sound fake and mistrusting, but the vast majority of my masking is not me trying to pass off a different version of myself. It is simply aimed at preventing negative feelings in others for THEIR comfort rather than my own and getting everyone through (because I’m not going to be all that comfortable if I’m excessively filtering myself). I know what it feels like to be upset and whether I know exactly why someone is upset or not, I don’t want it for them if it can be reasonably avoided and there seem to be many occasions where it might be if I didn’t do things as I’d like: if I didn’t sing to myself, if I kept my arms and legs the same way as everyone else in the room, if I didn’t ask all my questions, if I’d put things down when I wasn’t finished and come back later, if I put up with a bit of mess or inaccuracy to get things done faster (man, it pains me just to type that last one 😓). Once it’s seemed to work a few times, you become practiced and it becomes almost automatic. It’s a remarkable survival skill and I’m actually genuinely appreciative that I’m capable of masking and that it has let me attempt to ‘fly under the radar’ amongst my peers growing up so that I had the most opportunity to at least try things any way I wanted. The thing is, masking is incredibly draining. It’s like if an actor didn’t come out of character at the end of the day’s filming. If they failed to come back to themselves when the camera was off, they’d lose track of all their own stuff and likely be rather disoriented when they did eventually return. Not only are you losing touch with the rest of yourself, you’re also prevented from meeting your physical and emotional needs while you’re masked. I learned to ignore so many signs from my body trying to tell me what it needed and I came to honestly believe that I was hard to care for just because no one had worked it out and I couldn’t articulate it either. (No human being is truly hard to care for, it’s only ever a question of whether someone has it in them or not.) At one point years and years ago I gave up completely for a while in the hope that it would somehow force a solution. Spoiler alert: it didn’t. It was a spectacular failure from which I am, at long last, finally moving on.

The point (there is one, I promise) is that I know that masking has left me in serious burnout already in the past and now that I’m more aware, I can learn how to counterbalance by honouring the moments and periods where I am unmasked. To achieve this, I’m tasking myself with posting a picture each day for 360 days of a notable moment where I was not masking. I’m not sure if it will actually make sense to anyone else (I never am), but that’s not the criteria for success of the endeavour ☺️ as long as it helps me keep my heart open to life and all the things and people in it, I’m satisfied 👌🏼🙏🏼 and if my sh*tty executive functioning can get on board enough for me to actually post each day, I’ll be wildly impressed! 👏🏼

Note: I desperately wanted to start this on the 24th or 25th latest, but I was away and distracted for the weekend 😕 so I’m trying to just be pleased my brain got it this far 🤓