Autism Masking/Unmasking

“unmasking” IS self accommodation.

So much media right now is focusing on autism and masking/ unmasking today’s catch phrases.

This seems to be a difficult concept for many newly diagnosed adults to understand.

Misunderstandings abound, and I worry about the harm being done to individuals who feel now that they MUST unmask completely or risk their health, mental health, or risk doing themselves perpetual harm if they don’t perform this mystical ritual. In the forums I attend, there is so much distress over this . “I want to unmask but I don’t know how” with desperate pleas for help.

Many books have been written and loads of podcasts, pages, etc are filling up with discussion, false information, frustrating and scaring many individuals if I am reading the posts in recent forum interactions online correctly.

So of course I have to jump in and offer my own opinion, explanation, and insights/ beliefs surrounding these recent popular “catch words” in the autism community.

First of all, as in any other situation, check your sources! Many people are being paid to perform, whether it is books, videos, podcasts, blogs, media pages or venues such as tiktoc, FB, X or other instant info media. Who benefits? Who is making money from selling books, touting this “new insight” and “how to do it”, who is behind the push and the social pressure to “unmask”???? Should you be afraid, concerned, desperate to cure yourself and throw off all social discomfort to boldly and blatantly do what you have maybe never done before in your life?
Are claims backed up by studies, are actual statistics available to support claims for statistics and claims for the harm supposedly done? How does one prove those claims ?

What must you do to be the “true you” in all situations and all possible ways no matter what?
( this seems to be the “counter demand” of many of those pushing “unmasking” today.
No wonder people are confused!)

Definitions vary. “masking” is generally considered the same as “camouflage” behavior, or socially adapting behavior common to society’s demands, deliberately hiding the ways we might be different, despite the distress or discomfort, physical, emotional, or mental toll such techniques may cause in us.

I define masking as forcing oneself to do things that others expect of you regardless of how difficult or stressful it is to you. This includes a wide variety of social adaptations, dressing in acceptable ways, behaving within certain defined social boundaries, regardless of the emotional, mental, or physical toll on our neurology or our limitations or abilities.

I masked most of my life , school, relationships, work all demanded that I play a role and perform to certain standards. This is not just an “autism thing” but is something that all humans practice in any social situation. Performing “as expected” can be much more difficult in many circumstances for neurodivergent or autistic folks. How far will we push ourselves when our neurology refuses to cooperate?

Where masking becomes unhealthy is the place where we find ourselves physically sick, emotionally distraught, mentally stressed and distressed repeatedly.
When our physical and mental health struggles become obvious to ourselves and others around us.
So many of us (autistic folks particularly, although I suspect this applies to everybody else too) make ourselves sick to please others, to try to fit in, to gain approval, to succeed in a job or a relationship, to be accepted and simply to avoid social pressure to conform, perform, or to please the boss, the teacher, the preacher, the neighbors, the spouse, the “Others” of this world.

Because many of us are not good at understanding our own emotions or physical feedback, the demands we place upon ourselves can exceed our capacity to perform successfully. Result is meltdowns, shutdowns, burnouts, mental illness, suicide attempts, breakdowns, and more.

Here is the thing I want to say. When we hear the term “unmasking” we are actually talking about self accommodation and self care. We simply have not recognized that there are things we can do to make our lives better each day and there are hundreds of ways we can adapt and change in almost any struggle.

Many of these adaptations will take some “thinking through” and “working around” to achieve.

In the process of making self adaptations, you will automatically “unmask” as you go and help yourself uncover the things about yourself that have been neglected, put aside, pushed away in order to perform as required/requested/demanded/pressured/in society including private relationships .

We may have focused so long and hard on pleasing others and trying to meet their demands, we have not discovered that we have alternatives and that we have needs, wants, thoughts, ideas of our own which may have been completely locked away as we push, push, pushed to perfect our assigned roles and perform as others expected.

So this is about expectations, about choosing when, where, how to perform to please others, and about putting your own needs first and finding ways to help yourself do better and be healthier, saner, safer, and live in less stressful and distressing ways every single day.

Once we recognize the things we are forcing ourselves to do are causing such stress and distress, we can take those struggles one by one and figure out different ways to do them. We can substitute behavior, rituals, schedules, routines, clothing, food, locations, social interactions, jobs, the company we keep, and so much more. (that is self care and self accommodation)

Start by figuring out what every day problems or activities are the most distressing or difficult for you. Your job making you sick with anxiety? Your co- workers, spouse, boss bullying you and harassing you? The clothing that you wear a constant battle, too uncomfortable? The lights, the sounds, the constant demands to perform in certain ways?

Each can be broken down to it smallest elements. Each can be changed. Sometimes it may take emotional homework, discord and disagreement, major changes to your life, but many adjustments can be made in many different ways to eliminate one at a time, things that are making you upset, tired, burnt out, triggered with anxiety, anger, upset, distress.

When you discover and admit that you are struggling with doing things asked of you, you can decide for yourself if you want to continue, change, arrange, compromise, or find new tools or ways to do what is bothering you on major or minor levels.

“unmasking” IS self accommodation.

One step at a time, making adjustments to live the life you need and want and not doing things that make you miserable to please or appease others.

There are likely a hundred different ways to solve most problems we face. But first we have to recognize that we are struggling.
Then we can figure out what to do about it.
One struggle at a time.

5 years past diagnosis, I am mostly “adjusted” and self understanding that comes with diagnosis has helped so much.

Realize that uncovering your struggles and making adjustments to your life in so many ways will take time.

Do your best self care, make sure you put your own health and needs first so that you have the energy and emotional resources to face each day as you move forward. You are definitely not alone!

Self Understanding and autism

How do you get to know yourself?

That question may sound funny to older folks, we have experienced so much in our lives, if we don’t know ourselves by now, will we ever?

One of the things that happens when we learn of our very late autism diagnosis is that absolutely everything is seen in a different perspective.

We suddenly understand a lot of “whys” from the past. We can see how our autism worked behind the scenes in so many ways to cause struggles and how autism may be working in us today. We learn we have been conditioned to hide our autism, to think of ourselves as inept, perhaps think of ourselves as a loser, a bad person, a problem or a trial to others. Many of us hide from every day life and sensory input that can be overwhelming.

Many of us force ourselves to do “normal” things in order to please others (and we suffer from stress, distress, exhaustion, and multiple anxieties and dismay with constant pressure to “do it right” “stop messing up” and constant criticism when we fail to perform as others expect us to.

Many people who are recently diagnosed have felt lost and confused when they obtained diagnosis. “now what”??? “how do I stop masking”??? “how do I find myself beneath these assumed traits (from a lifetime of trying to fit in). ???

Don’t feel pressured to “take off the mask”. Some articles and discussions in today’s media give the impression that we must openly and defiantly be bold in declaring our autism and putting a new bold front forward. That may be fine for some. But for others, the comfort of staying quietly on the sidelines can be a comfort and a refuge. Social masking is not done only by autistic people.
Much of society in general conforms to expected “norms” in every day life. To get a job or get things done anywhere we are in public, we wear a persona, dress in socially accepted “uniforms”, wear socially accepted or culturally accepted hair styles, makeup, shoes, jewelry, and do socially acceptable things… we learn how to use “inside voices”, we learn to be toilet trained, we learn basic hygiene, we use social manners, say please and thank you, wait for our turn in line, etc.

Masking is useful to everybody in most societies at some level.

You can find your own comfort level about how far you are willing to cross social boundaries with clothing, manners, self decoration, behavior, or if what you are doing currently or have been doing all your life is right for you. You don’t “have to” take off any more of your “mask” than you want to!

Many of us begin to have better self understanding and can see patterns we developed as self defense in very early childhood (once we learn of our autism). Many older people ( born before 1980) were brought up with corporal punishment or verbal abuse as part of our every day lives, essentially the “old fashioned” form of coercive therapy, where you are punished for stepping out of line and doing anything that displeases the “powers that be” whether it was parents, your minister, your boss, the neighbors, unknown others. We may have learned to fear displeasing others at physical or mental/ emotional cost to ourselves. WE may have learned to please and appease others at any cost to ourselves to assure ourselves of emotional or physical safety, sometimes even before we could speak (see also trauma and autism for better understanding) .

We may have become self protective through aggression, becoming oppositional, defiant, resistant, or we may have developed other techniques for emotional and physical survival and self defense. WE may not be at all aware of these behaviors or their root causes until we understand our autism and how it worked behind the scenes, altering our understanding and our responses to the demands of others and the demands of every day life.

We may have developed unhealthy habits or turned to over eating, drinking, drugs, or becoming compulsive in many ways to help us through our days .

Seeing through the eyes of being autistic, we begin to recognize so many things of the past can be adjusted and changed, that we can step by step make changes in our own lives to make every day living easier and better, healthier and more in tune with our own abilities and disabilities.

This is the best part of self discovery and self understanding. We are not tied to the ways we have lived most all of our lives. We can change things to help ourselves move forward once we have this new understanding of how our autism affected absolutely everything in our pasts and affects everything every day in our daily lives today. WE can find and use self accommodations to make our lives better.

There are so many ways we can adapt our lives to our autism once we learn about our own neurology.

We might be overwhelmed by sensory input, or we might seek sensory input (or both in different ways and different parts of our daily living). We might struggle with physical limitations such as problems with balance, depth perception, hearing, vision, or gait.
As we begin to understand how our neurology gives us extra struggles (and also strengths in many cases) we can stop trying to live up to other’s expectations for us.

We can forgive ourselves for failing to meet others’ demands and find ways of doing things to help ourselves live better lives. We can stop forcing ourselves to suffer “every day” experiences that cause us distress just to please others.

For example it is almost impossible for me to watch tv, go to the movies, watch a ball game, go to a concert, go to the mall, ride a train or a bus, participate in anything where there are large groups of people gathered.
I used to try to do these things to appease and please others who enjoyed those experiences, but for me it was struggle ending in shutdowns, being sick to my stomach, headaches and deep anxiety. It was anything but enjoyable but I forced myself to endure sensory overwhelm in so many ways before I learned of my autism.

I have been able to find other activities and experiences more congenial to me and my autism, substituting dinner out at a restaurant for carry out to be eaten at a quiet location somewhere else. I can go to a museum instead of an art fair, I can go for a hike in the woods or at the lake shore instead of participating in a mass event such as a 5K run or a swim meet, a bike rally, etc. You get the point.
There are thousands of ways we can adapt our activities and our surroundings, the choices we make in our lifestyles and our clothing and “personal style”, and many small things we can do for ourselves daily to help us be more comfortable on every level. One small change at a time as problems, distress, discomfort, etc can become over a while, a new and better, more comfortable and peaceful way to move forward in your life.

Learn about your own worst struggles instead of forcing yourself to accommodate the demands of others no matter the cost in suffering for yourself. Find ways to change the things that give you the worst problems, learn about your own neurology and give yourself a break. Make self care a priority. If you need rest, find a way to get it! Adjust anything in your daily life that you can to make every day healthier and easier as time goes on.
If you find it a struggle and distressing or overwhelming, find “work arounds” to use instead.

Autistic Masking

what about masking? What is it?

Is masking good? Is it bad? How do we discover who we are underneath, when we have been taught all our lives to hide behind masking behavior.

Masking is a hot topic on autism discussion forms these days. From early age we are trained that certain behaviors are acceptable, and certain behaviors are not. From early on we learn to be polite, say please and thank you, learn to bathe, to clean our homes and do laundry, become toilet trained, to behave as society expects us to in order to fit in and allow ourselves to progress in society. This is true for all of us, autistic or not.

For those of us with autism, we might also be forced to hide our physical stims, force ourselves to make eye contact, have social interactions, do many things that are exceptionally difficult for us in order to hide our autism and make is “seem like” everybody else. But it doesn’t work!

Recent studies have shown that no matter how much training we have had, our autistic characteristics are discerned on an instinctual level by neurotypical individuals.
Our body motion, gait, facial expressions, voice quality, use of vocabulary, and other things natural to autism are picked up by non autistic individuals within moments. There is no point to “faking it” we give ourselves away as ‘different’ every time no matter how hard we try to hide it.

Learning social structure/ rules for polite public behavior/ simple manners and basic hygiene are parts of growing up and all children are expected to know these things. Many children may understand these rules without being taught, except for a few reminders when they get carried away with youthful enthusiasm or have limited coping skills. Autistic individuals may need to have detailed explanations of these things and may need help understanding how to perform as expected. This is not masking! This is learning how to get along in society using cultural rules of those around us.

Masking is when we force ourselves to role play things that are not natural to us. To force ourselves to be social when we would rather be home watching tv, to force ourselves to wear makeup and clothing, wear certain styles of hair or participate in things we hate because we don’t want to be thought of as “different” “odd” “quirky” “creepy”. We mask when we hide our interests, when we try to please others using behavior that is false to us or not of our nature because it is expected of us. Masking is giving up a beloved hobby or activity because others feel uncomfortable or think our interest is childish or inappropriate. Masking is pretending to enjoy opera when you would rather read a book or go to the library. If we are doing things solely to “fit in” or gain approval, and if we are doing it to the point that we feel sick with anxiety or distress, are having health issues, breakdowns, meltdowns, or panic attacks, we are masking.

How do we drop the mask and become true to our real, inner selves?
Think of the things you hate doing the most. Think of the things that are distressing, stressful, anxiety inducing, or actually painful which you do for the approval of others.

If we select the worst struggles we have in our lives and figure out a different way to do those things or find things to do instead, we are dropping our masks and becoming true to our inner selves.

I was not true to myself for the first 30 years of my life and I ended up with a suicide attempt. Therapy after that helped me find my real self.

I learned that I did not have to please others if it meant pain or emotional distress, putting myself in danger or participating in self harming behavior simply because I was trying to please others.

I began to dress simply instead of spending hours doing makeup, hair, preparing wardrobe, using hours of exercise and diet each day to maintain the standard my then husband expected of me.

I began to avoid the weekly dinners out at a new restaurant every time and instead had cookouts at home or simple picnics in natural settings.

I began to opt out of going to every football, baseball, basketball and hockey game and doing ‘sports’ every day of the week.

I began to listen to music I liked even though my partner did not.
I chose to do things on my own, much to the anger of my then husband.

Eventually I chose to avoid the company of many others determined to keep my behavior and interests within boundaries that they chose for me.
I found others of similar interests, beliefs, and behaviors instead. This happened over a lifetime of making choices over individual struggles regarding activities that caused emotional or physical pain.

My life evolved over time, each time I discovered something that was very very hard for me or something that actually hurt or caused me to feel sick, I figured out ways to exchange that behavior for something I actually liked instead of forcing myself to a mold of other’s expectations. I could be myself! I could do things my way! What a freeing concept!

Little by little the true person inside began to show herself.

Those who knew me in my 20’s at the time of my first marriage, my first jobs, my first few attempts at being social, participating in group activities, sports, and shopping activities, etc, would not recognize me today.

Some of the changes may be part of natural evolution of ageing, but a lot of the changes in my life were a deliberate effort to let go of others’ expectations that I must live a certain way, look a certain way, have certain interests, certain political beliefs, certain social circles.

Take the time to think about all the things you might do in a day which cause discomfort, distress, dismay, or actual physical or emotional pain.

Do you absolutely have to “do life” that way, or can you make changes in individual struggles over time to give yourself relief and to find peace?

How do I do this?

“This” is almost any thing in life you wish to accomplish.

Executive function and self-regulation skills are the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.
(definition is quoted from developing child Harvard. edu. website )

The forums I attend are full of questions asking how to do things.

How do I stop masking?

How do I get organized?

How do I gain independence?

How do I get a job?

How do I ask somebody to go out with me?

How do I find friends?

How do I redecorate this room?

How do I assemble a wardrobe?

I think I recognize something in common for all of these questions.
In every case, the project in question is complex, needing development of separate skills or taking separate steps, but the person looking at it can not figure out how to proceed.

Executive function insight is what is missing.

How do we know what we need to know, when we don’t know it? I have had miserable experiences attempting numerous projects without having a clue as to what was needed or how to proceed.
My entire childhood and you adulthood was scattered with embarrassment, shame, guilt, and frustration because I could not figure out how to do things that others seemed to know how to do naturally, and I did not have the support of others to help me understand.
I learned I was inept at many things, and it has been such a relief to understand I was not just plain stupid, but that my neurology was working against me in many cases, and that I should have had information and instruction before proceeding. In effect, most of my life has been spent learning “what not to do”.

This is another instance where my diagnosis and my understanding of my world through knowing about my own autism has been such a relief!

I had to learn how to break anything I attempted down into tiny steps to be taken.

I had to develop the ability to decide which steps came first and how to learn the skills needed for even the smallest project.

As I got older, (middle school, when I could finally access the local library on my own- back in the days before computers) I was able to consult books to get information about how to do so many things, books with photos, line drawings, maps, charts and other useful tools which helped my understanding.
I find I still learn best today by taking step by step printed and illustrated information through reading information, and then putting those steps together to understand how to proceed.

My inability to understand any unknown or never encountered project has remained the same. I will always need to understand things completely before I feel brave enough to attempt doing what is asked of me or is needed.

There are so many “how to” references for most life skills, both written and video/audio, and the internet is a wonderful tool for these things.
But many autistics are not readers and many do not learn well from videos, podcasts or lectures.
If you are somebody who needs a coach and must
“do it yourself” to know and understand, there is absolutely no shame in asking for help, taking lessons, finding a coach or a mentor to help, etc.

If a person wants to learn new skills of any sort, that information is available. We may need to ask for help to find the information we need.

We first must reach out and ask “how do I do this?”
If you know somebody who is autistic, this question is not just random thinking out loud, it is a question which needs a definite and specific answer with as much detail as you can provide.

Parents, spouses, caretakers, are you listening?

Flat Affect

I missed this one, I think!

I have been trying to learn if there is a link between Parkinsonism’s “mask” and Autism’s frequent reports of flat affect.

Flat affect is simply a lack of expressivity in one’s face and reactions.. the lack of showing emotion in one’s “presentation” to the world. Flat affect is reported as being frequent among autistic people.

I was quite surprised when the Doctor who diagnosed my autism said in the summary report that I “presented with flat affect”. I had always thought I was quite expressive both in my face and body, and in my voice! I certainly feel emotions, and was amazed that these emotions are not clearly visible on my face and in my reactions, etc in interactions with others, etc.

My mother was diagnosed with Parkinson’s while she was in her mid 50’s partly because she appeared to show “the mask” or flat affect that is known to develop with Parkinson’s disease… and knowing of her autism, I am now wondering if the flat affect due to her autism was perhaps attributed instead to Parkinson’s.

Flat affect might be one reason that autistic people are often accused of being cold.. our emotions may not be evident to others because of flat effect… NT people generally are very facially expressive of emotions and looking at one’s face is often a giveaway to one’s thoughts ( one being a person or an individual). When other people can not see our emotions clearly displayed on our faces, it is assumed that we are unfeeling. This is often far from the truth!

If you have been accused of ‘Not caring, being cold, being heartless, unreceptive, detached,” or otherwise unfeeling, yet you know you feel emotions sometimes desperately, perhaps flat affect is present. Did you know? I did not!