The “bell-curve” of masking & acting abilities in Asperger’s / autistic people

From what I’ve experienced, I’ve used various “coping” skills to “get by” as a “functional”(?) adult in the rest of the world.

From what I’ve learned while talking with other Aspergian/autistic people and reading their blogs, I’m not alone.

Whenever any of us talks about “masking” or “acting”, it usually strikes a sympathetic/empathetic nerve.  People on the spectrum from everywhere in the world speak up and say, “me too!”  This is usually followed by a sense of relief, among all involved in the conversation.

So let’s have a conversation…

It seems to be a commonly shared experience that most of us on the Asperger’s/autism spectrum feel that we have to mask or act just to “get by”, to “pass” for “normal” (whatever that is; who defined “normal” anyway?  Who set those standards?  Is there even a set standard?)

Let’s define the vocabulary of “masking” and “acting” (at least, the way I personally define them; I can only speak for myself).

  • Masking – hiding one’s true nature, usually so as not to appear “weird” or get stared at, made fun of, ostracized, criticized, bullied, or otherwise draw attention to oneself.
  • Acting – “playing the part” of someone other than oneself, usually to “fit in”, “get by”, or “function”.

Both of these are subjective and very personal terms, but that doesn’t in any way take anything away from their reality–or their necessity.  None of us should criticize ourselves (or each other) for doing these things.  They’re natural responses to dealing and interacting with a world that wasn’t built with spectrum people in mind.  Again, I repeat: it’s a natural and understandable response.

It’s also a learned skill, over time.  Our human desires are universal: it all boils down to pleasure and pain.  Those are the two sensations/categories that the nervous system deals with.  Society puts a lot of emphasis on the seeking of pleasure (and the various methods of doing it–some healthy, some legal, some benign, and others…not so much so).

But despite all the attention given to the quest for pleasurable feelings and experiences, that’s not the most important ambition of the nervous system.  The nervous system considers the avoidance (or at the very least, the minimization) of pain to be of utmost importance.

Pain…that’s an uncomfortable term.  It stirs up memories, induces emotions, brings tears.

And people on the spectrum are often especially sensitive to it, by our very nature.  We can’t change that.  We can only learn to deal with that, to adapt.

That’s why masking and acting are so natural, understanding, and of course forgivable strategies.  After all, that’s what our nervous systems are wired to do!  And this is true universally, for people on and off the spectrum.

People on the spectrum face a different sort of pain.  The pain of not being able to interact as naturally.  The pain of not being able to make friends as easily.  The pain of being misunderstood, and the sometimes-volcanic aftermath that follows.  The pain of not being able to express ourselves.  The pain of living every day in a world not geared for us, who doesn’t understand us, and never will.  The pain that we experience when we don’t understand them.

This pain is so constant and so long-standing that we may not even realize it!

But that’s where masking and acting come from; I think it’s an attempt to minimize that pain.

During childhood and adolescence (and perhaps, for many, continuing on into early adulthood), we build those masking and acting skills.  We learn, through trial-and-error, how to successfully mimic other people, impersonate our role models, or create an alter-persona of ourselves that is somehow more “acceptable” and “palatable” for the rest of the world.  We “succeed” when we appear “normal”, when the differences between Us and Them are minimized and microscopic.

But they’re there.

In my own experience (which has been echoed by a few others so far), those abilities and skills peak at some point.  For me, this occurred during early adulthood.  My energy was at its highest, as was my desire to fit in and appear acceptable and attractive to the neurotypical world.  I had no clue that I was on the spectrum, and I wouldn’t have such a clue for a very long time.  I figured I had no choice; I figured that this was how people grew up; I figured that this was just part of being a regular adult.

I had also had no clue how much these efforts were costing me.  I had no idea how much energy I was expending just to keep up the appearance.  I had no idea what it was doing to my brain, or even my body.  I had no inkling that anything “legitimate” was erecting the invisible wall that I was sure that had indeed felt, but was equally sure that I had knocked down and conquered.

But this ability seems to take on a bell-curve-like shape, plotting itself on this curve, as our lives progress.

Somewhere along the line, gradually at first, the bottom fell out.  While approaching middle adulthood, I realized that I could no longer keep up with the demands of the outside world.

What is wrong with me??, I wondered.  Here I was, an accomplished (by conventional standards) adult, having successfully knocked down that invisible wall so many years ago, having “made it” as a competent and independent adult, having successfully made friends and maintained relationships despite great geographical distances, having mastered the use of the phone, having established myself somewhere in an acceptable pie-piece of society.

And yet….I was breaking down.  Regressing.  Moving backwards.  The wall self-assembled again, and stood tall, looming large and insurmountable over me.  Sure, I still maintained healthy contact with my friends, even from those same long distances, and yes, even over the phone.  Yes, I’m still knee-deep in self-employment, and not at risk of losing that status.  I still maintain my professional license, and I’m not at risk of losing that, either.

But my brain was screaming at me to just rest.  My body was breaking down.  My life was taking a subtle nosedive.  This was all occurring underneath, behind the scenes, outside of the watchful spotlight of society.  No one had a clue.

I’m fortunate in that it has never (yet) crescendoed into a nervous breakdown, a panic attack, or a lockdown in a psychiatric ward.  But in a parallel universe, who knows?  And my crystal ball seems to be busted: I can’t tell what the future holds.  I never say never.

What I do know is that my own ability (and from what I’ve learned from others, this holds true for many) to act and mask has deteriorated.

Visually, this “bell-curve” that I speak of might look like this:

screen-shot-2016-10-16-at-10-15-29-am

The graph above represents my/our acting and masking abilities at different stages of life.  Of course, I’m in middle-adulthood myself, so anything beyond that is simply a theoretical projection, since it hasn’t happened (to me) yet.  The horizontal x-axis of the graph represents the various stages of life (kept non-specific on purpose), and the vertical y-axis represents our ability to act and mask in everyday life (or at least, the ease of which we can do so).

It’s important to note that we may indeed be able to act and mask throughout our lives.  The “Acting Ability” label on the y-axis is kind of a misnomer; it almost implies that one completely LOSES one’s ability to act and mask as we age.  But that’s not entirely true; we may not out-and-out lose the ability; however, it may take more and more energy to achieve the same level of competence (to be able to act and mask as well as we used to), than it took when we were younger.

Why does this happen to so many of us?  Logic dictates that as we learn to mask, mimic, act, and construct our desired personas, that with practice (we, the people of the spectrum are creatures of routine after all), we “should”, then, be able to not only continue to mask and act, but to become even better at it!  Through time, we should be so accustomed to doing this that it should be “old habit”, something we can do easily, mindlessly, naturally, and with minimal energy expenditure.

Why, then, do we seem to regress?  It seems that just as we’ve acquired the most masking and acting skills, those abilities start to take a downturn.

Again, why is this the case for those of us to whom it’s happening (or has already happened)?

I have my own theories.  These are just my own thoughts, based on my own personal experience, and since I’m only one person out of a sea of many, there are probably others (and I hope to come across them!  I hope more of us speak on this topic).

Theory #1: Fatigue/exhaustion:

We may simply get tired.  Everyday life has taken its toll.  We may be stuck in a rut.  Our health declines subtly.  Our energy wanes.  We’re simply out of fuel, and we can’t keep up the charade any longer (or if we can, it’s more fragile and delicate).  We may get very exhausted.  We simply can’t exert the amount of energy it takes to continue to keep up the appearance anymore.

Theory #2: Comfort/Self-Confidence:

Some of us may reach a point in our lives were we’re established, with secure jobs, partners, and/or friends (or if not, then at least we’re comfortable with not having them, either because we genuinely started out that way, or came to a realization of resignation/acceptance), and we may feel comfortable not having to mask anymore.  We’re no longer in school, or if we are, we’ve gotten the hang of it and established a comfortable position.  We may not be trying to climb a corporate ladder anymore, having established ourselves in long-term employment or self-employment, or perhaps as a stay-at-home-partner.  Or perhaps we’re on disability assistance, but we’re established in that system, and we don’t have to do the same legwork we did when getting started (meetings, interviews, scrutiny, etc).  Either way, our lives may have reached a point of relative stability.  We may or may not be satisfied or fulfilled by where we are in our lives, but we don’t sense that it’s going to change, and we may not feel the need to exert extra effort.

Theory #3: Cynicism:

The line of thinking may go, “the world sucks anyway; why should I be the one who has to do all the changing and make all the effort?”  There may be a real sense of “dropping out”, and in this case, it’s probably voluntary.  It’s a shunning-in-turn of the world, like we have felt it shun us for so many years–kind of like a “payback” of sorts, at least in our minds.  We become jaded.  We become sick of it all.  This can take on a flavor similar to the first theory, involving fatigue and exhaustion, except that there is a twist of irritability and/or frustration.  We’re writing off the world, much like it has done to us.  The rest of the world probably isn’t going to feel it or be impacted in any way, of course, but we do this for our own peace of mind, our own self-respect.  By doing this, we make that invisible wall an ally, because the isolation from the rest of the world becomes a conscious choice for us, a voluntary act.  This can be empowering for some.

Theory #4: Compromised Physical Health:

This is often an underlying root cause behind the first fatigue/exhaustion theory.  Why is it that we become tired, fatigued, or exhausted much more easily as adults than we are as kids?  Often, there are health issues.  Nutrient deficiencies begin to rear their ugly heads.  Cumulative exposures to environmental toxins and chemicals begin to catch up with us.  Side-effects of medications reveal themselves after all, after months or years (or even decades) of continued use.  Our food supply simply doesn’t deliver everything we need, no matter how well we’re fed, how high an income country we live in, how much we eat, how wise our food choices are (although some food choices are certainly better than others).  And most of all (hands-down), our stress levels accumulate and exceed our tolerance (even if that tolerance was pretty high and we considered ourselves pretty resilient in our younger, healthier years).  These stressors deal us huge blows.  And how many of us are dealing with multiple issues on this list?  How many of us are….and don’t realize it?  (When was the last time we had all of our nutrients tested?  When was the last time we were screened for high levels of chemicals and heavy metals?  Probably never, for the vast majority of us.  Who among us has had an adrenal stress hormone panel?  Probably very few of us.  These highly-important evaluations and screenings are just not done in general medicine, but they’re ignored and undiscussed at ALL of our peril.)  ALL of these things add up.  And our bodies’ abilities to compensate for them break down…especially as we age.

Theory #5: Pain:

We become weakened with physical or mental/emotional/psychological pain.  This especially occurs over time.  It’s all cumulative, and it takes its toll.  Everything from grief to abuse to abandonment to separation to fibromyalgia to arthritis to traffic accident injuries to chronic criticism to Lyme Disease to other chronic health conditions (physical or mental)…all have their impact.  They steal our energy, our focus, our motivation.  They provide distraction, confusion.  Some dismantle our self-worth.  Some dis-empower us.  Some mess with our minds.

Theory #6: Comorbidities:

This may appear similar to the previous theory describing pain, but this is specific to other mental/psychological health conditions.  These may include depression, bipolar, generalized anxiety, PTSD, anger, insomnia, and many others.  Many of us are (mis)diagnosed with one or more of these conditions before our Asperger’s/autistic reality is realized.  And for many of us, Asperger’s/autism explains everything, and there is no other applicable diagnosis now that the Asperger’s/autism is known.  But others of us really do suffer from (and I do mean the word “suffer”, since none of these other comorbid conditions are pleasant) one or more of these other co-existing conditions.  Sometimes, I really am prone to (transient, always very temporary, but significant) bouts of depression from time to time.  Grief (a common cause of my transient-but-profound bouts of sadness) seems to be the story of my life; I frequently seem to be grieving for/over something or someone.  I also have formally-diagnosed PTSD, starting with a traumatic event six and a half years ago, and continuing with other events that brought about severe anxiety and flashbacks of their own.  And I’ve had insomnia that comes in waves and then ebbs again (although I’ve been dealing with this current “wave” for as long as I’ve had PTSD).  All of these things take away our “spoons” (for those of you familiar with the Spoon Theory), and with that, our energy disappears, too.  And of course, it takes an enormous amount of energy to act and mask.

I’m sure there are other theories.  These are just the few that I’ve either experienced myself, or encountered when talking with (or reading the accounts of) others.

I’d love to hear other peoples’ thoughts on this issue; it seems to be a common experience that needs love and attention.  Above all, we must take care of ourselves (and each other) ❤

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19 Comments

  1. You are extremely fortunate to have not had your mental health/stability questioned, or face those deep, dark nights of the soul. Terribly shattering to one’s self confidence.

    I tend to agree with your theories. I have questioned myself with “Why now? What did I do wrong? Where has it all failed?”. I came up with very much the same thoughts as you. For me, after my life crashing and burning with regularity since I was 16 or so, the penny dropped after I felt abnormally tired for no apparent reason. I felt as if I’d been carrying heavy bags all my life…and simple exhaustion had me drop the bags. After I began investigating ASD for my eldest, it clicked why it all happened now. It had always been happening; I was just too stubborn to admit any difficulties. I was normal, dammit!

    Whatever the reasons, you are well and truly at the point where you must be you. The fact many of us have met you at this point is testimony to the fact you are with us.

    Liked by 2 people

    1. Lol! Thank you, girl! I call that phenomenon the “Asperger’s/autism spectrum hive mind” 😂😂😘💙💜

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  2. I mastered social ninjutsu, as I thought of it, in my early 20s so well that people not only mistook me for being neurotypical like themselves but they also assumed I was of their politics, faith, and often race (I’ve let people falsely think I was black, white, Indian, Hispanic , & Latino and they were of those races).
    It was remarkably easy. All I had to do was not talk about myself or offer my own opinions and they just assumed if i didn’t contradict then I agreed. Every now and then I’d slip and say something honest which spoiled the illusion. It was fun blending and then seeing their expression when they realized their error.

    Now I’m 40 and like Mystique in the X-Men movies I don’t find it amusing or worth the energy anymore. But it was amazing what I learned about people when they thought they were with their own kind, however they defined that group loyalty to themselves.

    Liked by 2 people

  3. Thanks for this fascinating blog. My theory is that we run out of people to inform our mimicry. I’m noticing that more and more as I get through my 30’s. The usual social environments: school, workplace, sports teams etc dissolve away as people start having families and become more insular. Suddenly (and especially if you are single/no children) the pool of potential associates becomes smaller. On the optimistic side, perhaps if you do have some form of personal and financial security, and you have worked out your comfort zone in terms of the social world then you can happily stay closest to the realm where you feel most at peace. You can in fact, stop trying a little. Which must be a relief!

    Liked by 1 person

    1. Oooh, I like your theory! It definitely rings true. (Except for that financial stability part – maybe someday! I’m always optimistic lol 😉 ).

      But jokes aside, I really do think you’re onto something! Our circles do get smaller and more familiar. We’re no longer in school, where the pressure to impress is probably at its peak. We’re more solidified in our professional careers, if we have one. We can let down our hair with our friends. We’re more established with our significant others, if we have them. And so on.

      Great point! Thank you so much for sharing it 😊❤️

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  4. I’ve heard a lot about ‘masking’ since starting to read intensively about Autism/Asperger’s. I think it’s what I call ‘putting on my public face’. (I’ve been calling it that before autism was on my radar.) When I was younger, my face would literally hurt with muscle fatigue after a party or other social event because of all the smiling/looking interested/preventing Bitchy Resting Face. These days it’s not so bad, although I think my jaw hasn’t unclenched once in the past few years…
    That bell curve makes sense, too. I’m middle aged, and a few things are happening since I turned 40 or thereabouts that I’ve put down to mid-life crisis: bouts of mild depression, higher levels of anxiety generally, increased unwillingness to go out and do anything, not having been truly happy for years – not constantly unhappy either, just sort of meh. But the idea of a kind of autistic burnout makes a lot of sense. I’ll have to dig deeper into the subject though.

    Liked by 1 person

    1. Thank you for commenting! I love to hear your thoughts 💜

      Yes, absolutely! You’ve got the right idea 😊 We all experience it differently which is totally cool ❤️ This means that however you experience it, that’s what it is. For some of us (including myself), the question can become, “am I masking?” Sometimes we know, and sometimes we don’t.

      For me, it’s basically anything I do differently when out and about or otherwise in a place where I’m seen by others.

      Luv, you’ve got me thinking! I do believe you’ve just inspired a blog post 💓💓

      Like

  5. I think this is where I had got to, burn out stage after years of fighting to survive, pretending to be something I wasn’t. I had to keep going despite my mind screaming because if I didnt, that would be the end. My asthma sort of came to my rescue and forced the issue. I’m lucky enough I dont need to work any more, and its eased the pressure no end knowing I dont have to go into the world with that mask any more, I dont have to face people if I dont want to. I feel guilty for it, guilty I cant support myself anymore, that Ive let myself/the cause down, but I cant imagine going back now. I dont think I could put the mask back on if I tried now, not for the hours needed.

    Liked by 1 person

  6. Oh my gosh, this is brilliant! I definitely feel a “me, too”. So much of what you said applies-I have multiple chronic illnesses (including fibromyalgia) that began in my early thirties and this last year was the first that I realized I had been masking and acting my whole life and how exhausted I was by it all. And how much I beat myself up for everything seeming to fall apart when the cumulative effects hit me. I just realized in April that I am autistic-that I just had played neurotypical for so very long I thought that’s who I was! I definitely felt the bottom drop out, and it is a great relief to hear of other people experiencing it, too. Now I’m rambling. 😊 anyway, I love this post!

    Liked by 1 person

    1. Hi!! Welcome to the neuro-family! 😉😁. Thank you so much for your comment! (And for your kind words!) I grinned the entire time while reading what you said, because our stories are so parallel 😊💖💖. If you scroll down about 12-13 posts or so, you’ll find the “500th” post and in that post, there are links to the 100th and 300th posts; in those, you’ll find links to blogs and specific blog posts (from different people) that I found *very* helpful and supportive during my own self-discovery 💜💙. They made all the difference in the world! A whole wave of “me too” feelings and a-ha moments! 😁👍🏼💟. I was exactly where you are a year ago 😘. The discovery could not have come at a better time, either–like you, I was getting exhausted and I’d always been very self-critical and life was getting to the point where something was going to have to give 💞💞. On a tangential note, Ehlers-Danlos Syndrome, or EDS, is very common in Aspie/autistic folks, and it often looks a lot like–and is often misdiagnosed as–fibromyalgia (!). The best website I’ve found on this topic is http://ohtwist.com, in case you’re interested 😊. I found out I’m Aspie in late March 2016 and found out that I’m EDS around November-December. I’ve got posts on all of that stuff, too 😉😂😊. Now *I’m* rambling lol! But please feel free to ramble as much as you like; I cherish it all 💚💙💜

      Liked by 1 person

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