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!

intolerance of uncertainty

autism and anxiety

The two most frequent co morbid diagnoses of autistic individuals are depression and anxiety.
Anxiety is present in the majority of autistic individuals, although it is not considered caused by our autism.

In effect, our anxiety is likely due to circumstances surrounding our autism, and related to having confidence ( or having no confidence) in our ability to handle situations that come up in the process of living our lives.

One theory which has gained understanding and helped many anxious people is “intolerance of uncertainty”.

In early 2000’s, a group of scientists developed an “anxiety test” that centered on self reports of situations that caused anxiety.
The doctors observed that the most difficult obstacles for many anxious people to deal with were the “unknowns” .

We deal with these issues every day of our lives, regardless of our neurology.

We never know how somebody else is going to act or react, we never know when troubles or distressing events will descend upon us from loss of loved ones, illness, injury, change of living conditions, relationship status, to political and world events far beyond the ability to control any of these things in our every day lives.
We can have anxiety over one or all of these struggles, and more.

How do we cope with the unexpected? Do we have insights or skills that can be learned to help us feel more competent to deal with unforeseen events? It seems obvious to me that just telling me I can’t control certain things in my life helps me cope with the worry and the distress I have over unexpected or uncertainty for anything in my future.

I can understand how this may be particularly difficult for many autistic individuals, since most of us feel very inadequate to handle many things in our lives, from social interactions to struggles with bullying, workplace misunderstandings and problems with performance or sudden demands of any sort. It seems to me that “intolerance of uncertainty” is behind a lot of autistic behavior. Consider ODD where sudden demands for performance of any sort are rejected or opposed . Consider the times we “freeze” when suddenly asked to perform, respond, answer a question, or act spontaneously in any way. Note that catastrophizing is rehearsing potential struggles and thinking about how we might cope with those, dreading the inability to do so.

Many autistic individuals may react this way to the unexpected because we may feel unprepared to meet the demands placed in front of us.
I know this is true for me. Is it true for you too?

I understand anxiety is not specific to autism, but that this may be true of any individual who struggles with being anxious in so many ways.

Things that neurotypical individuals don’t bat an eyelash at can send us into a tailspin.

I can see how we look for predictability and how we need to have as many questions answered about any new activity or expectation.

We ( who experience anxiety over the unknown) want to be prepared to meet the demand, and we may prepare, rehearse, plan, and attempt to develop scripts or imagine how we will react if called upon in new circumstances.
When the unexpected happens, we may simply lack the confidence, the experience, the insight, nor do we believe we have the ability to apply previous experience to this new and different circumstance.

Autism for many of us prevents us being able to apply previous experience to new situations, or finding the appropriate learned response to something new.

There are entire bodies of work out there, scientific papers, individual and group therapies, and articles, blogs, discussions, books available about ways to “teach us” to tolerate uncertainty. I can’t imagine the hell of exposure therapy where people are repeatedly exposed to sudden changes and demands in a deliberate way to “teach us” that we can’t control certain events of our lives, and to somehow make these changes more tolerable. I expect that for some, these therapies may help. For me, even contemplating such “therapy” sends my anxiety spinning and causes borderline panic… I could never force myself to deliberately experience such events. It seems my entire life has been a continual series of such things anyways!

I wonder if it will be shown that most of the intolerance we develop for certain circumstances or possibilities is actually the sign that we are not confident to respond to, or to deal with the unexpected or unpredictable. Will preparing for possible events of the future help us feel confident to deal with them when and if they might happen?
If we learn we have more options and that there are many ways of preparing for unpredictable events, will our anxiety ease and will we feel more competent to deal with the unknown?

Putting out Fires

Can I stop living life on “stampede” mode?

This has been on my mind for a long while, but I have struggled with how to present the idea so that it makes sense to others. The metaphorical idea behind the phrase “putting out fires” is supposed to give one an impression of somebody running from urgent crisis to urgent crisis without cease.

I believe the anxiety level in my life from childhood on caused me to live my life like this. I was so ill equipped to sort what was important from what was not, and so poorly understood what things in life were truly significant as opposed to what things were “just small details” with less importance.
I had nobody to explain these things, it was just “understood” by others in a way that was never clear to me for most of my life.

I learned early in my childhood to be hyper-vigilant in responding to demands and requests of others, and was very fearful to ignore or refuse these demands, commands, requests, directives, etc. regardless of who was making them. This was probably mostly due to my autism and my continual misunderstanding of the world, other people, and my place among all of it.
I was constantly fearful of displeasing any person, of doing the wrong thing, of being punished for making mistakes of any kind.

I believe I went from urgent situation to urgent situation “trying to prevent disaster” every day of my life in one way or another. Anxiety was always with me, to the point of pounding pulse, chest pains, shaking uncontrollably, losing my breath, having a huge ‘startle’ reflex, and many other anxiety responses for most of my life.

Looking back, I rarely spent time in wondering why this was so, or questioning anything about my life. I was too caught up in pleasing parents and siblings, employers, spouse, making sure my children and pets/ livestock etc were cared for, while juggling jobs and attempting to follow my intense interests surrounding animal welfare and horses in particular. I had no idea that my experience was any different from other people’s. Nobody knew!

Dysfunctional relationships with family and co workers kept me from sorting specifics, when I tried to understand why things happened certain ways, I was always told it was all my fault but I never understood how that was so.
I was perpetually bullied, intimidated, mocked, scorned, used, abused, punished, shamed, at home, at school, at church, in other social groups, and in individual interactions with others, and never understood why. I tell people I lived my life in fear, and this is so. I was afraid of everything, and afraid I would not be able to deal with any situation or make the right decision, do the right thing. Experience had proved over and over how inept, thoughtless, careless, etc I was, and every misjudged act, deed, expression, or interaction proved over and over the justification for my need to worry and to fear.

It was not until I was retired and my kids were grown and moved to homes of their own that I had enough time to do a bit of reflection and trying to sort out the “why” questions of my life.
I finally had time to do research on the internet, I finally had time to spend thinking about so many painful things from the past.

I was not able to sort it out on my own. I had to learn more about autism once I suspected it could be present in my life. Finding out about my autism gave me the tools and the understanding to see things in a different perspective and to understand what had happened all those years when I did not know I was autistic ( and neither did anybody else).

I was treated for anxiety and depression most of my adult life. Suicidal attempts and suicidal thinking mostly left me after I learned healthier and more self assertive behavior through counseling, but I still did not have the perspective I needed to understand how I affected others in my autistic ways. I spent all my time trying not to anger others, to do the right things to try to please them, and always falling far short of whatever was needed to keep anger and discord, punishment and bullying at bay.
I suspect that many others who never knew of their autism had similar experiences. Probably many others can’t even imagine what I am referring to here.

Autism and life experiences vary with each person’s neurology and circumstances in our lives.

I wonder how I can reach others who feel as if they are living life “putting out fires” and to help them find the tools they need to start living lives for themselves and not simply to avoid the displeasure or anger of others?

No ideas. I blog, hoping it sounds familiar and helps somebody take a step or two toward self understanding and self forgiveness. This is just one more attempt at sorting autistic experiences of the past and hoping to make enough sense to help others find themselves too.

Have you experienced the feeling of living your life simply “putting out fires”? Have you lived your life in fear?