How we do it

Self accommodation/unmasking 101

When we first discover our autism, we recognize that our different neurological wiring

has given us difficulties that neurotypical/normal/average people simply don’t have.

We discover that our responses to stimulus or any neurological input is processed differently.

Where neurotypical people seem to process information/input in similar ways, we may over or under respond or respond in surprisingly different ways to sensory input.

We may be the first to react to bright or flashing lights, cold, hot, pressure, being touched by others. Or we may not react at all.

We may find a cool breeze or steamy weather unbearable, or we may not notice if we go outdoors wearing light clothing in below freezing weather. We can be more sensitive, or less sensitive than our average counterparts. Our reactions are different because each of us will have uneven neurological development, but each of us did develop differently.

The things I do every day to make my life better, healthier, easier, less distressing or stressful may not work for any other autistic person but me.

There are lots of accommodations we can explore by trial and error for ourselves. Many adjustments require no costly adjustments or things like building construction, special equipment, furnishings, or large investment in certain brands or kinds of “training” or lessons, or therapy.

Many autistic people have the hardest time figuring out HOW they are struggling, they have tried so hard to do things to fit in, to please others, to avoid social contempt and gain acceptance.

Here are some clues that adjustments/ self accommodations are needed.

You come home from school, work, social outings, other activities completely exhausted or you frequently melt down or shut down, and must rest completely for a long time to recover your emotional and physical resources and be ready to do something/anything again. This pattern is continual and does not change as long as you keep doing the same things on your schedule.

You do an activity and find yourself breaking down due to anxiety, feeling sick, having headaches, vomiting, having meltdowns or feel on the verge of it every time you do that activity.

Certain people pressure you constantly to do things you don’t like to do because you don’t enjoy it, you do it anyways knowing how hard it will be, how upsetting, how sick-making or stressful, distressing- regardless. Or you may get sick, anxious, overwhelmed, every time you do these activities and may not realize that the activity or presence of certain individuals may be the cause of it.

When you interact with certain people you are always bullied, have meltdowns or anxiety.

When you wear clothing, shoes, makeup, special gear or uniforms to “fit in” and it causes you misery due to lack of comfort or sheer physical misery.

Going to certain places of doing certain things ends up in misery each time (and you may not even have recognized each time you got that horrible headache, for example, that you were in this certain situation or doing that certain activity.

Sensory sensitivities my also affect the way we eat, the way we clean ourselves or our surroundings, the way we do almost anything in our personal or shared lives at home and at school, at work, or in almost any situation because the others we live with, work with, play with, or interact with insist on certain ways being used, certain conditions being met or responded to only in certain ways. (this can be anything as simple as which way you put the roll of toilet paper on the dispenser to whether you sleep with windows open or closed, sleep with heavy blankets or light, with a fan on or off in the room for example).

Ways we may accommodate others or try to endure in any situation can be masking behaviors if we make ourselves miserable to keep others happy.

So many of us have been trained to be compliant and people pleasing and taught from a very young age that our opinions, thoughts, ideas, comfort and feelings of safety do not matter.
For many just finding the things we do that bring us anxiety, distress, stress, and physical misery may not be immediately evident. We have been doing these things all our lives.

Knowing our neurological strengths and weaknesses can help a lot. If you have a diagnosis summary, many times test results will show which things we are best at and which things are hardest for us. This can help us understand how to work around or re arrange things in our lives to help us do better with less stress, distress, physical illness, anxiety, fear, discomfort, etc.

So lets start with the hardest things first.
I realized early in life that having many people in motion around me was distressing. I was afraid of being touched/pushed, knocked down, falling, getting stepped on.
School was misery physically due to the necessary gathering of masses of children all being directed up and down hallways, stairways, into and out of rooms at the same time. There was plenty of pushing, shouldering aside, squeezing in between, tripping, stomping of feet, etc. It was an everyday experience I dreaded deeply. I was forced to endure it.

I have always hated going to events that naturally draw crowds, sports events, concerts, lectures, movies, shopping malls. My life became much more endurable when I stopped doing any of those things. None gave me pleasure, all gave me huge anxiety.

What is hardest for you to do each day?
Do you wear clothing that makes you miserable so you will fit in with others around you? Are there adjustments you can make for your comfort’s sake but still be within keeping of school or company dress codes, etc?

An easy one would be to lose uncomfortable high heels or pinch-toe shoes and find something that conforms to the code but doesn’t hurt when you are on your feet all day. When you start thinking about the things each day that you hate or suffer through, how many of those can have substitutes which still meet requirements, but which will be easier and better for your own comfort, productivity, and more comfortable for your ability to cope with bright or flickering lights, loud or otherwise upsetting sounds, etc.
adjusting those things and doing “something else” instead is the ultimate key to self -accommodation/unmasking . It doesn’t have to be done all at once but happens over periods of time. One day we will look back and see how much better our lives have become because we made many small adjustments over time.

If you get sick each day at work, it is likely this is not the job for you.
If you have meltdowns at work, home, or other places continually, can you recognize the thing that is triggering them? Maybe you can change your situation, location, the overstimulation or other sensory or emotional input that is overloading your system and do “something else”, “somewhere else” or in “other company” or “at another job” where meltdowns won’t happen because you will not be constantly exposed to unbearable input.

There are many everyday things we can change or do differently, swapping one activity for another, doing something else a different way which will get the job done whatever it is, in a way that is easier and less distressing for ourselves but still meets social, family, work, or other expectations in any situation. sometimes the answer is to stop doing the “thing” all together.

Can you think of “work arounds” for some of the things that are hardest for you? Can you substitute “something else” and still accomplish your intentions? If you take one thing at a time, you will find that as you move through life, your every day living will be easier, less difficult, and even more comfortable , if less “conventional”. Self care always first. If you need help discovering your worst struggles or need help thinking out new ways to self-accommodate, there are lots of books, blogs, forums, podcasts, Youtube, or other online venues available to help.

If I could do it, I think almost anybody could, but first I had to have the self-understanding that knowing my autism diagnosis brought. Without realizing that I had many struggles which others simply did not have, I was stuck trying to do things I was just not neurologically set up to do. It has been amazing to recognize my struggles and strengths and make adjustments to everyday life. Things here have never been better. Hoping this will happen for you too!

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?

Masking

sorting it out, or trying to: random musings

I am reading more on my autism forums and blogs about masking. It has been confusing me a lot!

I am reading declarations from people swearing they will no longer be masking. They will stim in public, they will be their autistic authentic selves at all times and in all ways, loudly and proudly. “throw off the mask!”

wait a minute… really? I understand that masking is done to gain social acceptance… that it is done to ‘fit in’… things like wearing things that are the same as everybody else at the office, wearing ( for women) specific styles of makeup and doing hair and nails in conventional ways to be seen as ‘normal’ and become socially acceptable… forcing oneself to be careful to have manners and try not hurt anybody’s feelings, to respond in kind if asked to participate in social gatherings, group activities, etc etc. Many of these things are very difficult for autistic folks, and seem to be harder for us than those with neurotypical selves. Have I got it all wrong?

I suspect that a good many people who are not autistic struggle with doing all of these things and with “playing the social game” as well.
Why else would there be all the cartoons and comments about wanting to get home behind closed doors and take off your work persona along with the office clothes or uniform, slipping into comfy clothing or PJs all of that. ????????

At age 68 I have very many habits deeply ingrained. I have had a very difficult time sorting out my own “masking” which I am assured by others is being unhealthy and somehow morally untrue to my autistic self hidden deep inside. I can’t find that me.
I did ” play the game” (and mostly failed anyway) when I needed to and I dropped most of that once I left the world of the office behind.
Late in high school I did try to use makeup, wear appealing clothing, spend hours doing my hair – at least off and on. My attempts failed, and I went back to wearing cowboy boots and jeans for the most part, and spending more time with my horse than with people.

Things changed mostly around 21 years old when I had a boyfriend who pressured me to be more fashionable, to do things a certain way, to wear certain things, to change my basic self to make him more satisfied with me as a partner who brought admiration and social status to him by looking or acting certain ways.
Of course these were HIS ideas of who I should be. Being trained since infancy to appease and perform for praise and to avoid anger and punishment, I worked very hard at it all. I had chosen the wrong partner.

Subsequent marriage and then later divorce from that man, and a load of good counseling on making healthy choices and learning to be self assertive, that all went away. It took years !
I had spent so much time trying to please others I did not have a clue about who I was or what I wanted.

I gradually found myself, and married somebody completely different. My partner of 40 years supported me in being the ‘real’ me right from the start.
I stopped dressing to please others and began to wear clothing that was comfortable and didn’t hurt. I have not owned a pair of high heels in 40 years. My feet are so grateful!
I stopped doing my hair and makeup and stopped worrying about the latest fashions.
I found something that suited me.
I stopped going to social things and started finding delight in nature. In essence I found myself. Years ago.
It took quite a while to realize that I had developed confidence in my own choices of how to appear and how to behave in any given situation.

How much of ‘masking’ is due to our lack of self confidence, our lack of self knowledge and self understanding in the rush to fit in and please others? I wonder if this is just one more thing I had to be taught because my autistic rigid thinking did not let me see alternatives until somebody else pointed them out?

After thinking it all over, I suspect I don’t have much masking left in me.
I have no desire to openly stim in the ways that I did as a child. I have changed and adapted stims over all these years of life. Why should I go back to awkward and difficult behavior that caused me to be even more socially isolated? Don’t all people grow and change and adapt? Why is that so wrong?

I have no desire to aggressively proclaim myself as “different” and wear yet another “social uniform” representing another group of angry people seeking attention by “in your face” attitudes.

The strident calls of “unmasking” and demanding to be accepted no matter how far afield a person dresses, behaves, or self decorates, etc do not mesh.

Human nature is attracted to those who are similar and rejects those who are radically different (in most cases).

I have no gripe with the way anybody else wants to represent themselves, but if I walk into a formal situation wearing a diver’s wet suit instead of traditional formal dress, should I be offended if people avoid me and look at me askance? My reading of some of these loud opinions on the forums is that I should be angry not to be accepted as myself no matter how I present myself. Really? I think that might be a tad unrealistic.

Maybe I misunderstand it all. In any case it is only my observations and construct from my own
” old lady ” perspective.

I speak for nobody but myself in my limited understanding of so much of the world.

Anger and strident behavior do not seem to me to be likely social attractants.

One side of the group autistic mouth proclaims and demands and the other side laments lack of friendship, finding few who willingly interact and respond.
Do what is right for you.

Masking stims: What are you Hiding?

“Me?? nothing!” Another Autistic awakening.

I guess it was inevitable. As we grow and change our behavior adapts to pressures surrounding us. Most of us have stopped drinking from a bottle, sucking our thumbs, carrying a blanket, and have become house trained (ok, toilet trained, then) by the time we go to school.
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Note: stims are self stimulating behavior which provides sensory input and which autistic individuals instinctively seek to help themselves with self expression, self comfort, or to cope with our world.
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I was a thumb sucker. I had a callus over my thumb where my teeth made almost constant contact with it… pressure from parents and grandparents to “stop that, you are not a baby any longer!” eventually had its effect and this form of self comfort was no longer available to me. I longed for approval, and did all I could to avoid disapproval and scolding.

About age 2 I was taught to brush my teeth. By age 4 I was expected to brush my own teeth without help. It was explained that my teeth would fall out and I would not have any if I did not brush them often. I demanded to brush after I ate anything. To this day I brush my teeth immediately after eating unless I am in public and it is impossible to do so promptly. I floss frequently, even to the extent of carrying floss picks everywhere with me, and having them available around the house… I have described this as compulsive behavior in the past.

I went to school at the age of 4, I was not emotionally mature enough, but I was reading, counting, could tie my shoes… what a bright little girl! I began to bite my nails shortly after I started school.

I continued biting my nails until once again social pressure began in middle school. By 7th grade the teacher was inspecting girls’ nails before class every day to see if they were clean and well cared for. Everybody noticed when the teacher shamed me in front of all the class. How humiliating! I learned to compulsively wash my hands and to dig beneath the quick to clean my nails, and I tried desperately to quit chewing those nails and the finger edges until they bled.

I was successful after several months of struggle.

I began to bite and chew pencils and erasers. I demolished several pencils in a week and always had splinters in my gums and between my teeth. This was a short lived experiment on my part, resolving itself in a couple of months. It was painful to brush my teeth then, so I found a useful behavioral substitute in gum chewing.

I chewed gum all day at school, often getting scolded for having gum in my mouth and being punished, but I could not quit. I used all my allowance to purchase gum. Being without gum caused panic and anxiety. I had to have it!

Around that time I discovered jaw breakers. I began to carry and consume jaw breakers, having them in pockets and purse at all times. I could manage to chew up a jaw breaker between classes, ( 3 minutes allowed to pass from one class room to another). I went through many jawbreakers a day.

I had the jawbreaker habit for many many years and eventually my teeth were so stressed I had to get caps put on as I broke teeth off from chewing such hard candies.
I have had to give jaw breakers up now. All that sugar releasing constant endorphins, all that wonderful hard crunchy chewing! It was perfect for me (except of course for the obvious health consequences).

I have always sought out hard pretzels, loved hardtack, hard dry toast, the harder the better, the more chewing experience the better.

I even have a description of words for the foods I like best.

They are foods which provide “chew time”: ( you would think that might have been a clue, if I had been looking!)
I have kept the habit of constant brushing and flossing, but now(today) instead of seeing that as compulsive behavior, I understand it is another way of masking my need for oral stims.

To this day I love hard and dense breads, pretzels, crackers and jawbreakers. I am warned not to have them because of my dental conditions. Caps can’t take the abuse.

I had never put this string of behavior together until thinking today about reasons it seems impossible for me to lose weight. I seem to have to have something in my mouth at all times. Snacking is a constant thing with me.

Suddenly the light went on!

I am one of those people who need lots of “chew time”, oral stims do something I need… I have had inner ear/balance problems all my life. I wonder if chewing hard things somehow provides vestibular stimulation as well?

I am continually uncovering ways in which autism has worked in my life. Truly this has been a surprise and a revelation.

As an older adult I have adapted to social pressures, masking stims such as this need for chewing over and over as social pressures intervened with my favored methods of stimming.

Having finally uncovered the hidden stim, I am making plans to look into finding out more about adult “chewies” . So interesting. I’ll report on my progress at a later date.

Now I am going to sit down and try to search my memories for other hidden stims.

What are you hiding?