You may or may not be aware of the recent, thought-provoking Twitter and blog campaign called #TakeTheMaskOff
It’s what has led me to start blogging again, both as an unmasking process for myself (with all the introspection that requires), and as a possible way to contribute to this world without damaging my own well-being.
What is the mask? you may be asking.
The mask is the sum total of all the ways in which autistic people (to greater or lesser degrees) change their behaviours – either unconsciously (especially if late or un-diagnosed*) or consciously (especially if you’ve been unlucky enough to suffer the trauma of ABA and similar ‘therapies’). Some of us are so adept at masking that we are chameleon-like, able to change and adapt to suit the people and situations in front of us. (And the stereotype of autistic people says we are all rigid and unable to be flexible?)
I was a chameleon. It was the perfect skill set (along with my analytical and pattern recognition skills) for the work I did as both an SME (small to medium enterprise) business consultant and as head of personal and organisational development in a sizeable NHS trust.
My technique (well-suited to the consultancy role) was to ask questions, ask for a tour of the place, listen, watch and then adapt my voice, my persona, my language, everything to match that organisation, its leaders, and its staff. It let me fit in and from there get to the bottom of whatever the business or organisational issues were and work with the owner or manager to solve problems.
I was good at it.
No surprise really as I’d been doing it all my life to survive everyday interactions. In a non-professional setting I sit back, watch the interactions, listen to conversations, work out the patterns and then behave accordingly. I’m the quiet one on the sidelines who slowly joins in once I’ve got the measure of what’s required to belong.
Sometimes (increasingly since self-identification) I leave before that point if the mismatch between who I can be and what the situation requires is too great.
That all sounds great, no? A successful career. Making important contributions to local businesses and the healthcare sector. The status and money that go with that.
Yeah, until the point where the accumulation of the costs of pretending grew so great that I burnt out.
On a Friday night in 1998 I finished a massive project putting in place bespoke processes to cover 3,500 staff (I won’t bore you with the details) and culminating in an organisation-wide external assessment. I must have picked the kids up from nursery.
I don’t remember. I crashed.
I spent two weeks in a catatonic state lying on my youngest child’s bunk-bed ‘watching’ video after video of Star Trek, Star Wars, etc. movies.
The next two weeks we were on holiday with in-laws.
That gave me a month in total to come back from the brink.
When I went back to work, I handed in my notice and have not worked full-time since leaving that employment, and mostly not at that level either.
Most of those twenty years, the mask stayed firmly in place. Of course it did. I had no idea that I’m autistic. Maybe five or six years ago a friend pointed me in the direction of an online questionnaire. It said I was very likely autistic. I dismissed the result as evidence of me being a chameleon. I couldn’t be autistic as I was female (and that’s despite – or because of – a psychology background). Fast-forward two or three years and I came across a blog about female Aspies. Holy shit.
Down the rabbit hole of research I went. I read blog after blog. I completed a number of questionnaires (several reliable sources required for any theory). I joined various online groups, learned more and more, and understood so much about myself for the first time in my life. There was no doubting. I didn’t need a diagnosis (more on this on a future post).
It was as if a weight had lifted from me. I wasn’t broken. I didn’t need to be fixed. I could just be me. I cannot describe the relief.
The first tentative steps of unmasking involved sharing this new understanding with others. But who? My nuclear family – husband and offspring. Four of my closest friends – two in real-life and two online.
Over time the number grew to include my parents and in-laws, a couple of people who I guessed were also on the spectrum, and finally a tiny number of people who needed to know because of my own unmasking; “No, I’m sorry I can’t come out at short notice. I’m autistic. I need plenty of warning and it needs to be somewhere quiet and not too busy”.
To begin with this level of unmasking was fine, in fact it was more than fine. It was miraculous. I could let go of the ever-present anxiety of being found out as a fraud. I could stop dreaming-up acceptable reasons for not going out (illness, another meeting, something in my diary). I promised myself that from that point on I would be honest with those who knew (it’s too short notice, I can’t face people today, I haven’t got any words today).
I already had a pretty small group of friends. That group got smaller; some by my choice, some by their choice.
The other area of rationalisation was online. For a while there I’d lived a pseudo social-life, with a fair number of Facebook ‘friends’, Twitter followers, membership of active forums, and some semblance of being a ‘normal’ person who could interact with others. Online is great. It gives me time to think and process before I reply. As time went on though I had less and less energy to give and less and less patience with the this-doesn’t-change-anything nature of shouting into the bucket that can be social media, so I let go there, too.
For a while the anxiety lifted; the depression lifted. I loved my unmasking. I could just be me.
Now I’m into the next layer of taking the mask off and it’s way tougher. It requires looking at the real me. A me I don’t really know because of all the layers of the mask.
I recently went camping with girlfriends. Usually when we do this, it’s part of a festival of some sort, with opportunities to go do other things than just hang with friends. On each of those other occasions I’ve been mute by the last day and needing time alone afterwards to recover.
This year we were camping only, with no festival and all its distractions. I had all my strategies thought out and in fact I was still able to speak now and then on the way home. But only just. Still, I congratulated myself.
That first night back home, however, I dropped back into the catatonic state of exhaustion and re-lived the trip over and over. Without the festival distractions, I had to face myself fully. Down in the dip of depression, I saw myself as serious, nerdy, heavy, and why on earth would my friends want to be friends with me? Why should they have to accommodate my need for isolation, deep conversation, seriousness, and silence when they, to coin a phrase, just wanna have fun?
My usual response to this situation would have been to isolate myself from those friends. Convince myself that they hate me and then gradually lose touch with them. I’ve done it before. It’s a pattern.
This time I reached out to one of those friends. She came back with a list of reasons of why we’re friends. Reasons that I can see are valid and not just lip service. She’s one of the jewels in my life.
I probably need to contact the other two, ask why they are my friend. It’s a very vulnerable thing to do, to take my mask off even further. It feels so very self-indulgent, so childish, so much like I’m fishing for compliments.
I’m not. I’m trying to understand…
and be understood.
*Diagnosis – this is one of those instances where I’m using a word even though I disagree with it for myself. Diagnosis comes from the medical model and assumes that autism is an illness or a disorder. I prefer the word ‘identified’ and that autism is a naturally occurring difference. That what makes autism a problem is society’s inability and unwillingness to make room for those differences.
I also accept your right to use the word you choose, if you are autistic.
I also hold it lightly. In the context of children and adults who are profoundly affected by being autistic within our culture, I don’t have enough knowledge or experience to make any kind of rigid stand here.