Not my job

Autism, appeasement, people pleasing

I grew up in fear, lived most of my life in fear, beginning with corporal punishment from my caretakers before I could even speak.
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I learned early on that I must try to please those around me in every way to avoid punishment. I learned to be obedient, submissive, “helpful”, quiet, to keep my thoughts and opinions to myself, that nobody wanted to hear about my interests, my thoughts, my wishes.
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I learned that to resist any suggestions, directions, orders, requests, or demands was to be a bad person, terrible, selfish, hateful, thoughtless, insensitive, evil, greedy, ( this would be a very long list if I completed all the negative descriptions and discussed the anger, punishment and treatment that went along with them)
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Today we know appeasement behavior comes from trauma, it is one of the instinctive responses to trauma. Fight, Flight, freeze, and appease/fawning are all responses to trauma. We use them to save ourselves from dangerous situations (traumatic events) early in our lives, or whenever the trauma begins.
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I became hypervigilant, wary and very aware of any signs in others that they might be angry, unhappy with me in any way.
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I never learned healthy interactions with others in my “growing up” home, nor in the disaster that was my first (abusive) marriage.
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I finally got therapy as an adult. The therapist was able to explain the unhealthy dynamics of my relationships, all based on me pleasing others as a response.
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I learned that I was not ever, (ever, ever, ever) responsible for another person’s happiness.
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I learned that I did not “make” another person angry, I learned that it was not my job to serve and please others, not my job to give them my possessions, my body, my labor, my paycheck, my time and effort. ( its not your responsibility either!)
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I am not responsible for anybody else’s happiness and comfort but my own.
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This was a huge concept and difficult to figure out. All my life I had been told that I made others angry, that I made them unhappy, that I hurt their feelings, that I caused them emotional pain, caused them inconvenience, that I caused them distress. It was always my job to fix that!
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I tried so hard! I learned eventually through therapy and so many patient explanations from that blessed therapist, that I am not responsible for the way others see the world, how they experience any event in their lives, that I have not got to fix things at any sign, signal, request, demand for my services, servitude, actions or interactions.
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It was a very difficult concept to understand. Autism’s inflexible thinking no doubt hindered my progress at first.
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I learned how to say NO, how to set boundaries, how to recognize when I was being used, abused, intimidated, manipulated, and how to enforce the boundaries.
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I learned how to make healthy choices for myself and not to weigh the results regarding what others thought, felt, believed, or insisted on, but only what was right for me.
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This was such a huge change from the way I had always thought and believed (and behaved).
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I still fall back on appeasement from time to time, but for the most part have learned new techniques to help myself consider what I feel, think, want, believe in making healthier choices.
(This can be done! If I could do it, I believe almost anybody can)
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The difference in my life set me free. I can’t tell you how different my life has been since I finally found out that the way we have been taught is not necessarily the way things must be forever.
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I was given new communication skills/ tools, and learned that I could choose for myself what is right for me.
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It is not our job to make others happy, to fix anything for their problems or situations in this world.
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It is not our duty to be sure that others get what they want in any way at all.
(read that again and rub it in , repeat when necessary)
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In case you have not discovered this concept, give it some thought.

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So may older autistic adults were raised using physical and emotional abusive coercion, can you see how this might apply to your own traumatic past????
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You can do something about it. You don’t have to live in fear. This fact was one of the most difficult concepts to learn and learning how to free myself has been a struggle, but the difference in my life has been that of night vs. day.
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Are you afraid of displeasing others? Are you sacrificing yourself and giving all of your time and efforts to pleasing the aims, demands, desires of others? Its something to think about!

Autism Expectations

We have spent a life time trying to live up to others’ expectations
What expectations do we have of others ?

This has to do with autism and relationships. We have all read about our repeated failures to live up to the expectations of others regarding performance, behavior, productivity, ability to do all the things that society usually expects of “normal” or neurotypical individuals. We all know the frustration, self blame and shame, anger, disappointment, and distress over the ways we fail to do things others expect of us.
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Many of us have been punished repeatedly, ostracized, blamed, shamed, bullied and pressured in so many ways over our failures to live up to the demands, requests, requirements, and requirements of others in every- day living.
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This goes for relationships of all sorts, too. Friendships, co workers, schoolmates, and social encounters in the general public as well as interactions within families, romantic relationships, dating scenarios, interactions with anybody at all are always up for judgement by others.
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In the several forums for adult autistic individuals which I attend regularly online there is a constant theme of sad reports on the difficulty of finding friendship, finding romance, Struggling relationships or complete lack of them. Of course this goes back to the diagnostic criteria we must meet to get our autism diagnosis. We do struggle with relationships.

I also see a pattern among some of the complaints and distress.
I wonder how much rigid thinking applies to our own expectations of what friendship “is”, what romance “is”, what true love “is” and I suspect that many individuals in these threads have very rigid ideas about this topic.
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Do we expect physical perfection and idealize what the partner in “true love” must look like?
Do we expect constant attention and attendance on our wants and needs, whether partner, friend or family member, expecting them to act on our demands and wishes and feeling hurt if we are not the complete focus of the other person?

Do we expect absolute exclusion of all others in favor of our own presence? Do we feel jealous and try to control whether the partner or friend does things sometimes with other people and you are not included??
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Do we spend time idealizing all the things we will do, how it will be, what will happen when we spend time with that person? Are we disappointed, hurt, enraged if the actual experience does not happen the way you want it to, or if the other person refuses to do the things you want them to?
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See the phenomenon of “limerence” in the way we think about others and the unhealthy ways we may come to have some of these ideas and ideals.
There are lots of explanations of limerence in depth if you use any search engine on the internet.
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Sometimes friendship and romance, even business relationships, relationships with family, neighbors and others we encounter are not at all what we want them to be, not what we believe they should be, or what we expect. Do we have realistic ideas about relationships?
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It does work both ways , regarding this idea of living up to expectations.

Do your expectations for interacting with others keep you from having healthy interactions and relationships ?
It might not be just “them”.

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!

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!

What is behind the increase in Autism Diagnosis?

Today’s understanding of autism means more are being diagnosed.

I have been reading the news! Headlines report a huge and alarming increase in the occurrence (diagnosis) of autism. Statistics are quoted, speculation abounds, as in many other facets of experience with autism, politics swing, sway, hold court, agitate, educate, and exacerbate opinions and fears. We can see the work of the press, pharmaceutical advertising, faction groups, appearance of pop culture heroes with opinions all over the internet in articles, videos, podcasts, sub -culture groups, and videos, popular social forums and sites where many people now obtain their news.

Here is the thing. Although statistics from previous record keeping show increase of autism by leaps and bounds, record keeping and definition and understanding of the nature of autism as well as guidelines for diagnosis has changed dramatically over the years.

When Autism was first discovered, documented, and began to be an official medical/psychiatric diagnosis, it was not well understood.

Official diagnosis began around 1980. It was a huge relief to have a few explanations or definitions for so many severely impaired individuals struggling in institutions and care homes.
Autism was at first diagnosed only in people who today would be called “profoundly autistic”.

Autism is still the “new kid on the block” as far as scientific understanding goes. The very first person diagnosed officially as autistic only recently passed away.

During that time much has changed, from recognizing signs of autism to the way it is understood.

Instead of a behavioral disorder, where focus was on changing the problematic behavior of autistic individuals, we know today (through scientific research and huge gains in the tools we use to analyze and discover genetics, neurology, biology, the brain, behavior, etc. )
that autism is caused by uneven development of our neurology long before we are even born.

It is primarily genetic in nature, is not due to trauma, pollution, medications, foods, brain damage, vaccinations, or evil spirits.
Autism is not caused by exposure to things after we are born, not caused by injuries or diseases, we are born with autism and we die with it.

Other conditions may closely mimic autism and with no defining feature common to each and every autistic individual, some who have had brain inflammation, trauma, or other physical or chemical causes for their neurological struggles may end up with autism diagnosis. Science and understanding are always “works in progress”

Autism has been present in the population for generations even before it was named. In my own family, it seems autism has been present since at least 1859 when my great- great- grandmother was born. She spent the last 15 years of her life in an institution and there are letters and other papers to document her unusual behavior and “strangeness”.

In literature and philosophy and general social culture, autistic people were ‘fools,” “idiots”, “simpletons”, often even then classified by lowest possible social standing.
In the 1980s it was believed that autistic individuals had no empathy, would never marry, would have no friends or relationships, never hold a job, and must be trained like animals to function at all.
( read a complete history of autism including the changing theories and definitions of autism as science and medicine has advanced – I have written articles on autism history near the beginning of this blog if you want a compact version)

Today we know people like me can be autistic, too. I am married, have a family, read and write and have been gainfully employed. The understanding of autism and the parameters which define it have undergone a massive evolution. Statistics available tell so little of the actual story of Autism and are grossly misleading when cited and quoted without context, definitions, or explanations.

People speculate that some of the most brilliant individuals in history may also have been autistic, but that “branch” of Autism was not understood “back when”.
My mother (born in 1929) was called a “simpleton” by her parents and siblings. When I got my own autism diagnosis at age 68, long after she had passed away, it was easy to recognize that my mother and probably her mother too, were autistic, as was the before mentioned great great grandmother.

In each generation of that family line, there were suicides of young women up to age 30 and of men 50 and over for as far as I can trace that family line ( late 1700s).
I suspect this also shows autism runs in this family line, although when those people lived nobody knew about autism. Suicide rates are up to 8x higher in the autistic population as compared to the general population.

Today there is still no defining single test to determine diagnosis of Autism. Science is still avidly looking for one! Nobody can say “for sure” an individual is autistic through dna, blood, or other tests, and there is no physical “look of autism” to give clues.

The only thing every single autistic person has in common is that their uneven neurological development is discernable and definable in many ways. What neurological struggles we have are different for each of us depending on how our neurology “develops” before we are born.
Descriptions used to diagnose autism today are extremely different from the descriptions used in the 1980s.

Today’s media or other people examine the medical statistics which quote the huge rise in numbers of the diagnosis of autism, but there is little understanding that it is because autism is being recognized more frequently, the parameters used for diagnosis have been widened, narrowed, redefined by science repeatedly. This is bound to continue as understanding continues to grow.

It is not because the actual frequency of autism has increased.

Society, science, and medicine are forming new understanding of autism and the statistics are reflecting this.

Keep an open mind and remember that what makes good headlines and sells news is shock, fear, anxiety, scare and horror. Who benefits by this sort of reporting of statistics with no actual understanding of autism, its history, or its changing definitions? Follow the money.

“Autism for profit” is a big deal these days, watch what you use as your source of information, find more than one source if at all possible, look for the motives, the movement of money, the politics, and explore the science and the history of what is reported with such shock and fear headlines to find the “real story” behind them.

Special Autism

You are so special! Now you have “Autistic Joy” too!!!

Oh man, here we go again. I am noticing lots of online conversations, and now suddenly Youtube and blogs, suddenly even articles written about “Autistic Joy”.
I am not certain where this originated but the same people who promote “special interests” and “autism is a superpower”, “autism is a gift” are at it once more.

I have been scolded and prompted to respond to multiple queries about my “special interests”, my “superpowers”, my “Autistic Gifts”, and now my so called “Autistic Joy”.

The power of positive thinking is real, the ability to recognize and appreciate the good things in life is real, the sense of accomplishment or self we may obtain from recognizing positive traits in ourselves is healthy unless it is unrealistic or imagined.

I find these prompts to be condescending and actually the opposite of empowering. They all fall under that “special” label where we are constantly pointed at and labeled and “othered”.

These things may be well meaning and meant to encourage a positive outlook in children, but when some 20 year old lectures me about my “special abilities” and how I should be proud because I am autistic, I wonder what sort of BS they have been raised to believe.

Autism in childhood is hard enough, wait until they figure out they have been given a completely unrealistic evaluation of their abilities and their potential (you can be anything you want to be)

I am proud of my autism like I am proud of my diabetes or my high blood pressure. These things are what they are and I don’t go around like some PR person touting the “advantages” of these conditions and how important they make me.
I smell something bad when patronizing people praise and condescendingly (metaphorically) pat me on the head, telling me how wonderful I am.

There may be advantages to being autistic, but in all these years of living, I’m not sure I can name even one.

Most people experience positive traits, and can appreciate things about themselves, but that does not make them “special”. Yet folks are here all over the internet once again telling me how “special” I am.

Its perhaps mistakenly meant to be positive or encouraging, but I smell condescendingly shallow patronization and back-handedly once again pointing out that for an autistic person, I am doing so very well! For an autistic person, pretty good, (still not neurotypical though, too bad for you, your performance in one or two areas of life may meet or exceed neurotypical norms, good for you, you are so special! )

PS, even after almost 73 years of life on this planet I am unable to find “happiness” and as far as I am aware, have never experienced “joy”.
Your experience may be different, good for you, that’s not bad for an autistic person!!!
( sarcasm)

Disclosure of Autism Diagnosis?

Now you know you are autistic, should you tell others?

Disclosure of an autism diagnosis is a very personal thing. Be aware first that there is no such thing as “keeping it a secret”. If you tell one person, they may feel free to talk about your diagnosis with others, especially among family members or friends.

People choose not to disclose their autism if they feel it may bring on discrimination, stigma, or somehow affect social or professional standing.
Stigma is real, many people today do not understand what Autism Is and discriminate and make judgments automatically.
Some may want to avoid stigma and “instant judgement” that comes with what amounts to yet another label. That is certainly understandable.
Certain employers or individuals we meet may change the way they treat us because of our autism diagnosis. This may be true of family members or friends, too.

Others choose to disclose their diagnosis to obtain support on the job through accommodations, or to obtain government financial support or access through certain programs available to the handicapped.
Some, like me, disclose my autism because I write about what its like to be an old autistic individual in today’s society. Saying “I believe I am autistic, let me tell you about it” does not have the “authenticity” or “authority” that telling people I was diagnosed at this late age (68 at diagnosis, now in 2024 almost 73 years of age) and explain the experience and insights I have gained after diagnosis.

Disclosure for others may be a way of letting family and friends know that everything all those years ago was not, after all, all your fault, but that you have an actual neurological condition which causes you struggles you never suspected for most of your life. Disclosing diagnosis explains to others your quirks, your brilliance, your odd little things that seemed until now inexplicable to others.

Expect reactions to vary in each individual. You might be surprised at who is accepting and supportive, and who scoffs or mocks or refuses to learn about it all.
Be aware that once you do disclose, there is not putting the rabbit back in the hat. That news is out there and even if you refuse to discuss your diagnosis, others will! ( often behind your back). (but maybe they do that anyways).

There is no right or wrong decision, everything depends on what is right for you. Think it through thoroughly, don’t expect any person you tell to actually “keep it a secret”.
Do what is right for you.

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.

After autism diagnosis

Now what?

The word is out! More “fully mature” adults (over 50 years of age) are learning about autism and asking themselves related questions.
Am I autistic?

Statistics show there are more autism diagnoses being made in adults of all ages.

We will spend a lot of time looking for qualified diagnosing professionals , struggling to find those with actual experience working with adults autistic individuals and who are willing to accept our insurance, set up a payment plan, give us an appointment some time in the future (up to 3 years waiting time sometimes in autism clinics especially for older adults).

We will spend a lot of money driving to appointments, staying in motels or camping near by, we will be stressed and distressed and struggle to find the right professionals in places we can reach and struggle through strange places to sleep and eat, new places to navigate, new heights of anxiety and distress .

If we make it as far as getting that precious appointment, we may find we are saddled with “other diagnoses” that explain our behavior and struggles because the diagnosing individual is not actually familiar with autism and the many ways it can show itself in mature adults who have coped and adapted on their own for so many years. We may give up in despair but still believe in our hearts that we are likely autism. Self identification of autism is accepted by many autistic groups for adults because we have experienced first hand how difficult it is to find competent professional diagnosis .

So after what is likely years of focus, struggle, many phone calls, emails, in person visits,referrals, failed leads, so many inquiries, searching for diagnosis, we finally find a rare medical professional who recognizes our autism and we have a name for our struggles and distress in all the years of our lives that came before.
Autism!

We know now that we are autistic. Autism has worked behind the scenes all our lives and most of us, although we were painfully aware of being “different” but had no idea why.

Autism answers so many “whys” of the past.

It explains physical struggles with balance and coordination, it explains our difficult social interactions with others. We can understand why we find so many experiences overwhelming. We can understand how our neurology fails us in things such as sensory input.

What we see, what we smell, what we hear, what we taste, how we move, how we process our emotions may all be influenced by the neurology we have been given, present from birth, and nobody knew.
Suddenly we can begin to understand how autism had its way with us all these years. We understand why we do many of the things we have done all this time to comfort ourselves, trying to find ways to cope with stress caused by events of every day living when we have many struggles that are not visible or understandable to others (let alone to ourselves, having been shamed, scolded, blamed and punished all this time for ways we have failed to live up to the expectations of others. Nobody knew!

Now we do know about our autism, we can begin to discover all the working of autism in our every day lives. We will experience a huge range of “roller coaster” emotions from anger and sadness, grief for our lost earlier lives and the pain of our childhood and early years, right through relief, a sense of release and anticipation, confusion, bewilderment, overwhelm; we are likely to experience it all.

Here’s where I am seeing so many posts and blogs and questions. We have established lives , we have coped and made adjustments, we have worked so hard for so long. How do we proceed from here? How do I do self care, self accommodations, how do I go on, now I know about my once hidden autism. What can I do for myself to make my life with autism easier, less distressing, less overwhelming?

First thing, understand that it took you all your life to get to this point. There are no miracle “autism treatments”, no “autism drugs” , no “autism therapy” waiting for us.

There will be lots of information to sort through, lots of people wanting your money to give you special diets, special schedules, special “therapies”, special supplements and making outrageous claims for their special programs.
It is easy to get lured down a path which promises miracles. Please keep an open mind, but do your homework. Research scientific reports carefully to see if results of any program have been proven and posted in reputable peer reviewed journals and repositories of such records.

Here is the truth. We can not change our autism, but we can change the way we face and cope with so many of the struggles we are presented with each day.

Learn about your own neurology. Read and understand what autism IS and IS NOT. Figure out what your best strengths and worst weaknesses are. This is where a report from your diagnosing professional can help. Usually there are tests given and results shown as part of the diagnosis and summary of the evaluation examinations.

In autism it is typical for us to have a few very strong features, even ranging into the level of being gifted in some way. It is also typical for us to have very difficult challenges in the way we are neurologically set up to “do life”.
Using my own diagnosis as an example, I learned I was gifted with words, comprehension and usage, but I had only 25th percentile visual processing and 35th percentile auditory processing.
Thinking back I realized why I have always used reading to get information, because what I see and hear in “real life” interactions is predominantly useless to me.
I may see well due to corrected vision ( I wear glasses) and my hearing tests at very high and low ranges, I can hear more than the average individual.
BUT what I see and hear is predominantly useless to me because it is never processed, never registers in my mind at all. What goes in does not stick or register in any meaningful way, only snatches of understanding are available to me in any “real time” interaction.

All my life I was told I was not paying attention, I was not trying, I was not applying myself, that I was lazy, thoughtless, and many other labels were given to me to explain my failures all those years.

Your neurology may be completely different, with different strengths, different struggles with sensory input of one kind or another.
Look for the best and worst performances in your test results. It will give you clues. If you don’t have test results, for weaknesses, think about the things that have been hardest for you in every day life, all your life. Find strengths by thinking of the things that give you enjoyment, pleasure, or a feeling of being competent.

Now I understand what was really going on, that I have actual neurological difficulties that make many common daily activities very hard for me to perform, I can find ways to substitute activities, support my weaknesses, adapt my life to new ways of doing things that will not put such pointless demands on my neurology.

This comes at a price that might make things very difficult for you and those around you.

Things have not been working so well for a long time, trying to make those things better will shake up our routines.
Those who live with us, work with us, and interact with us daily may find those changes less convenient, may resent that we no longer choose to force ourselves to do activities that cause us misery.
Others may not understand when we begin to make personal decisions about our lives to make things easier, less distressing, more comfortable from health, emotion and mental well being standpoints as well.
When I began to look for self accommodations I realized there is a huge lack of information about all the ways we can deliberately change our lives to make things more comfortable and easier every day.
There are so many changes we can make !
We can start by finding the worst struggles, eliminating or coping with triggers in new ways, figuring out “work arounds” to make our worst problems of every day living easier to cope with.

We can change not only physical surroundings, but also our routines, our jobs, our living circumstances, our clothing, our attitudes and outlooks. Its a lot to sort!

What is hardest for you, every single day?
Does it have to do with demands from others?
Does it have to do with sensory input that affects you in unusual ways?
Does it have to do with your own attitude, expecting yourself to perform as society says you “should” and giving yourself anxiety, depression, overwhelm , meltdowns, and conflict within your home, at work, in other areas of social interactions?

Have we developed bad habits to cope with our struggles, with alcohol, addictive behaviors, street drugs, maybe neglecting our health and not exercising, bathing, or maybe we over eat?

There are all sorts of things we can change. It might take courage to find new ways, to face family members and draw the line, refusing to participate in activities they may expect of you, but that cause you distress and misery. There are many substitute activities to suggest and to try “instead”.

Take the time to think about all the ways you struggle every day.
As individual struggles, what can you change to make things work better, go smoother, be easier on your senses, be less distressing or overwhelming?

Relief does not come overnight! Expect to have to work at sorting your own autism and maybe expect to try several things before you figure out what is right for you.
Over time with many small adjustments and maybe some large lifestyle changes, you will likely find the path is smoother, the struggle is less, the rewards greater.
Don’t be afraid to sort it out and try a few changes !
Your health, well being, and daily improvement to your quality of life will be observed over time.
Things will get better. You are worth it!!!

Nobody Knew!

A lifetime of shame and blame for sensory processing disorders.

Those of us who grew up before diagnosis and understanding of disabilities surrounding sensory processing, autism, adhd, learning disabilities such as dyslexia, were blamed for our struggles.

Were you told “you just don’t try”, “you are not paying attention” “you are lazy”, “You know very well what you have done”, “pull yourself together” “get with it” and other shaming and blaming comments, frequently with punishments according to the failure to perform as expected?? So many of us lived lives of misery trying to explain how hard we were trying and being punished for things we failed at which were beyond our neurological abilities. Nobody knew.

In the days when many of us grew up, failure to take personal responsibility and to perform as expected was considered mental weakness, moral weakness, or even worse, we were given labels “stupid” “idiot” “simpleton” … you can fill in the blanks.

Many of us carry the scars of well meaning “correction”, emotional or physical, or both, testimony to the concern of parents, educators, religious leaders, and others “back then” who were advocates of punishment as the way to correct and control any failure of children right through adulthood, beginning in some cases before the child could even speak.

Today we know so much more about autism and the neurology of so many ways we struggle to perform.

This is such a relief and vindication for so many of us born before 1980, when autism was first diagnosed, when understanding of neurological function struggles was just being discovered.

We have come such a long way from those roots of scientific searches to explain why so many of us failed to thrive, failed to perform, failed to live up to expectations or to fit into society and its mandates. But many of us carry scars in our minds, hearts, souls as well as our bodies.

It was such a relief to finally understand the lifetime of failures I had lived before I got that diagnosis . “Autism” explained so much. “Autism ” answered almost all the “whys” of a long and painful life of struggles.

I never understood that I had struggles which most other people did not. What a relief! It is never too late to find new understanding .

It is wonderful to me that so many adults today are learning about autism and how it worked behind the scenes all our lives without knowing or understanding, our own or that of others.
Now we can make our own lives better through self understanding and self accommodation. We have the answers and the means to discover new tools to help us every day.

Nobody knew!