Behind the Mask

Recently, my eldest has been struggling through the maintenance of her very well established and complex mask.

I am always reading about different aspects of neurodiversity, but I am most drawn to the lived experience of it. What is it like in each neurodiverse mind? This has led me down a path of thought about how I would explain to someone just what that maintenance is requiring of her, of me, of anyone who is masking. Connecting this idea to nature, you can see how something like Ivy works in a similar way to masking. Ivy uses the structure of a tree or building to grow, adding beauty, colour and character and, left untended, to grow. It reaches into places that you never quite intended and insidiously destroys the original structure. Becoming bonded to the structure until the only way to separate them is to kill the Ivy and slowly remove it once it is dead.

In a similar way, tending to the task of dismantling a mask can be slow and difficult, with parts bonded together and the original somewhat damaged or difficult to recognise.

Sometimes I think the word ‘mask' itself is misleading. Social masks are a necessary part of human experience which can make it difficult to understand that masking for a neurodiverse person is in no way comparable. The brief, context-based adjustments that a person might make occasionally to fit into a situation does not compare in effort or cost to the suppression of identity, traits and bodily movements across all environments. Imagine having to keep this up in a continual, prolonged and constantly revised format for an entire day, week, month, year or lifetime!

Some people cannot ever unmask because this kind of masking is survival. It is the thing keeping you from harm or greater harm. Even if you are aiming to create safety for someone, masking may remain because safety is a felt sensation. Only the person keeping up the mask can determine if it feels safe to remove it, even partially.

This is a complex, layered structure of protection, repression, analysing, updating, learning, evolving, copying and much more, all operating in real time. IN REAL TIME! In the time it takes you to ask, “How was your day?” someone who is masking has analysed the whole wider environment, you and all micro expressions and body language you may be using, plus any other people present and their micro expressions and body language. Then, slowly processing the words into language and running through appropriate and non-appropriate answers, suppressing their desire to not look at you, to leave, to move, running multiple other thought trains which are possibly unconnected. They are trying to dampen their nervous system response. They are maintaining a facial expression that is unnatural, copying your expressions and tone. They are checking and double checking the response mentally. Then also responding.

Sometimes this is seamless - you don’t notice. Sometimes, the imperceptible delay registers somewhere in your system, alerting you to a difference you can’t quite put your finger on. Sometimes it is obvious. It just depends on the processing ability of the person at that time.

Hopefully, that gives you some idea of the heavy requirement that masking causes on a body and mind, the reason it drains a persons energy and why I find the comparison to social adaptations of masking so abhorrent. As I have been turning this over in my mind, I think about my own complex structures and the more it seems that my mind resembles a film production studio.

You have a certain amount of  in front of the camera glossiness, behind that, a team of costume, hair, make-up. This is the public domain version.

You have directors, runners, sound, lighting, cameras, agents, hangers-on, etc. This is the layer that might hold the fear, the shame, the assumptions, the embarrassment, the expectations. The things that make the glossy team feel necessary.

Then you have a physical set propped up and partially constructed, changeable but also familiar. The construction of that set might be as detailed as a real house or street, but the reality is different: it is unsteady, there are holes, trap doors, scaffolding. This represents the habits and patterns that are built along the way. Some automatic behaviours may lay here.

Behind that are the finance, governance, policies, HR… just endless layers upon layers. Some sturdy, some less so, some useful, some appearing as more of a hindrance than a help. Here is the internal script, the beliefs and values. The true identity, if you can get to it, may also be back here.

I will say as well that there are multiple studios running in my mind, each with all these layers. They don’t like interacting with each other much either, so they must be maintained individually. Very occasionally, the union appears and shuts down the whole place, all the studios are down. Sometimes, health and safety is in control of just one of them, making everything pause. Sometimes, the actors and directors cannot hear each other and sometimes the fuzzy mic boom is visible in the public domain - most embarrassing!

Many would describe me as a highly organised, efficient and capable person. I would not describe myself that way, although I concede that I can handle a lot. The school describes my daughter as conscientious, hardworking, self-sufficient. She is so good at masking that they forget she is autistic at all! But she doesn’t forget. She knows just what it is costing to go there every day, what she must construct just to be present, and so do I.

What I have learnt in more recent years, as I have attempted to remove some of the complexity of my own mask, is that some of these structures and scaffolds need to stay in place - some of the patterns, habits and values are supporting the true identity. That has been one of the most valuable take-aways for me:

I don’t have to support myself with these structures until I can learn to do it without support. I can support myself continuously forever, the scaffold can become part of the set design permanently, and that is ok!

That knowledge is something I try to pass on to my children: To help them figure out what works and keep it there forever, to help them understand that you don’t have to ever move past the support. It can be so hard to accept support when all you want is to fit in. But remember that the cost of ‘fitting in’ is only ever being paid by you.

I know what it is like to live in my own mind - the collision of my diversity in there and even the distorting experience of feeling like a passenger to it sometimes. I am acutely aware that my experience is not the general experience nor is it always the experience of other neurodiverse minds. You may say “That sounds perfectly right, we are all individuals which, of course, means we don’t think alike.” Except we do. I have studied the ways we, as humans, all generally think and feel. Even in neurodiverse brains there are similarities. I guess, what I want to delve into is not the ways we might be the same but the ways we think differently, as well as the way that each individual's life experiences create a lens that people then see their world through.

I think I am most drawn to working with people with neurodiversity because I understand the experiences from the inside. Not perfectly or precisely, I have my own lens of experience, after all. But I hope I can offer examples and language that can help to piece together or help dismantle another internal experience.

To help others find their way, to understand how their mask is working - what parts of it should remain, and what could happen if it slipped away….

Yours,

Samantha Dawn