Why am I questioning my diagnosis?
Imposter syndrome is common among recently diagnosed folks, as well as those who are first beginning to recognize their struggles might be based in their neurology. They wonder if they fit the criteria for diagnosis, they wonder if there must be a mistake, if the doctor is competent, if they deliberately hid or exaggerated their struggles or answered test questions correctly , completely, or misunderstood context /meaning of certain test processes, directions. We have so many questions! Once we get diagnosis, we often wonder, “can this be right”? “is this true?”
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Seeing ourselves and our lives from this new perspective alters absolutely everything we thought we knew, understood, believed, thought and gives us answers to a lifetime of “whys”.
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It is usually a relief to learn that everything, every struggle, every failure in our lives was not “all my fault” but instead a sign of having a different neurology which causes struggles “average” or “normal” individuals simply do not have.
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Along with this, we carry blame and shame and lots of scolding and punishment for “failure to perform as expected”. We could have done it if we had tried harder, we were being lazy, deliberately rude and cruel, we were shameful and bad people because we could not/(would not) do what was expected of us in so many situations growing up and all through our adult lives. We were shunned, mocked, bullied, shamed, blamed, often punished, sometimes brutally, for our failure to perform as expected.
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We have had those ideas thrown at us and pounded into us (metaphorically or even physically) since we were infants. We have struggled and tried so hard and nobody believed that this was true. Suddenly understanding that we were right all along, that life has been difficult, painful, and that we have struggled and tried so hard in so many ways over a lifetime is usually a shock. We know it, but to have these struggles finally confirmed by others is like culture shock. We see everything differently. It is a lot to sort when we get to doing emotional homework and seeing almost every painful incident of the past in light of our diagnosis. It was not our fault, nobody knew, and so much was due to misunderstanding and skewed neurological performances…. it was ASD (and our other co diagnoses sometimes too) working behind the scenes.
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Nobody Knew!!!!
WE re live so many painful events of the past, suddenly see “why” we struggle socially, “why” we can’t seem to do so many things that others appear to do with ease.
There are years of accumulated events we must look at and understand through this new lens of information.
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I am here to explain that “imposter syndrome” is part of the processing of all this new insight.
WE try on the new definition, look through newly informed eyes at different parts of painful struggles of the past. Suddenly we may understand “what happened” and get one of those wonderful “aha” moments when a bit of information clicks and we suddenly “get it”. What a relief!
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Expect emotional storms, learn all you can. Ask questions in reliable places such as autism forums where there are lifetimes of experience to explain, inform, suggest, and support as you begin this new part of your life and find understanding of yourself, your lifetime, your neurology, your gifts and your struggles. There are many great resources today in the form of books, blogs, podcasts, scientific studies, autism online pages, forums, videos in various places all around the internet.
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Expect the sorting process to take time, do your best self care as you work through it, emotional storms will be less if you are healthy, fed, hydrated, and rested. You will have more resources to draw from when the going gets tough.
Its OK to feel every emotion as you work through it all, likely you will experience grief, sadness, anger, resentment, feelings of helplessness, unworthiness, relief, excitement , intense interest and the insatiable desire to learn as much as you can about your own neurology and how ASD applies to yourself.
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If you have formal diagnosis, try to get your evaluation summary in writing. It outlines your worst struggles and best strengths and can be very useful for self-accommodations going forward.
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Welcome to the new world your diagnosis /self identification opens up to you, welcome to self understanding and better understanding of all the “whys” of a lifetime.
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As you make self care and self accommodation a priority, your life is going to get easier and better in many small steps.
Best of all, diagnosis taught me I was not the “only one” but that there are many others “out there” who understand. We are not alone.
Tag: ASD
Autism diagnosis anniversary
Coming up soon
For me, diagnosis changed my life enough that I remember the date and circumstances around my diagnosis clearly and I celebrate it each year. At the end of this month ( September 2025) I will celebrate my 6th autistic anniversary.
Knowing about my autism has changed my life for the better. Self understanding was something I had missed completely all those years before and it has taken emotional homework to sort and understand so many things from the past.
I am still learning about my own neurology and still trying to find ways to adjust my life to make struggles easier.
It has been hard to accept that I really am impaired in “normal” every day activities by my neurology. I find myself facing grief off and on when I struggle with some aspect of daily living where autism causes misunderstanding or makes it difficult to do something others do with ease. Todays news and strife adds to the emotional pain and like everybody else I feel particularly helpless, vulnerable, afraid of what lies in the future.
I try to remember to do my best self care, not to feed myself on social media’s shock and fright tactics (such things raise viewership and media does not hesitate to feast on horror, fear, distress, etc all over the world to gain customers).
I am trying to keep my life balanced and put myself on a diet of doing things that I can control, things I can do in my own little sphere to make my world better. In order to do this I must accept that I can’t control much, that I am not helping anybody by becoming dysfunctional through distress and anxiety induced by the feeding of my fears through social media/the news/ etc.
I can keep informed with just a few minutes of reading daily, I will no doubt be informed if the world is ending and somebody will tell me what to do (as if we could do much in that scenario).
I have been reading a lot of history over this past summer and have come to recognize that this sort of thing goes on in every generation. There is always a battle of “sides” of understanding… it seems to be human nature. There is always violence, mayhem, killings, sick behavior by individuals, just as there are always others who struggle to do good.
That all seems to be part of human nature.
I can look back in my own life, and I can look into the stars in the night sky and see how insignificant my own personal struggles are in the scheme of the world.
Very few humans are recognized beyond their own lifetimes, the rest of us experience life and all our struggles in different ways and pass on without fanfare in the world scope of things.
Do what matters most to your own life, your own loved ones, your own little place in your group, your community, your personal sphere…. you can safely leave the rest of it to history and world processes that will go on forever.
Thoughts on my own progress/process. It has been almost 10 years since I first began to suspect I might be autistic. It has been since 2017 that I began to try to learn more. I got diagnosis almost 6 years ago and began this blog in 2019. I find I am in a different position now and I have less information to share. Today’s science has uncovered many things and has clues to so much more but it is very slow going. Current trends in politics are very concerning and I am watching with strong interest. People who believe in science and finding and documenting facts are working continually for better understanding and I think funding will continue to be available from those who are financially able and who are concerned. Beyond that it is not within my sphere of control and I must rely on others who have the powers I don’t.
“accept the things you can’t change, change the things you can, and find the wisdom to know the difference” is something I am trying to live by. Learning what we can control and what we can not seems to be a key to mental health as we all struggle with conditions in the world today.
Find ways to give yourself what you need, what your loved ones need, what is good and right for you and yours. The rest is just details.
Autism diagnosis process
What happens during the Autism assessment?
People seeking diagnosis and anxiously waiting for that far off appointment often wonder what is going to happen? What is the procedure that is followed? How are tests performed? What are they looking for?
Autism diagnosis is based on traits that have been observed since its discovery, and the testing procedure, standard measures of performance and understanding are based on behavior rather than neurological testing. That seems odd, doesn’t it, considering that we know autism is based in neurological function and sensory processing struggles due to uneven neurological development that happens before we are even born. Some autistic like traits may be observed in individuals who have suffered trauma or have been in severe accidents, but these symptoms are due to “something else”. ( although autistic people can also suffer trauma and severe accidents).
So criteria was set out for diagnosis and the guidelines for diagnosing autism which have been the standard for many years are laid out in the Diagnostic and Statistical Manual of Mental Disorders (now version 5) published by the American Psychiatric Association. The tools used and the standards are still based in discoveries and assumptions of early days in science’s understanding of ASD. You can find the entire section about autism diagnosis and the actual wording of the whole Autism description and testing online. Try using ” DSM5 American Psychiatric Autism” as a search phrase.
Behaviors are observed, tested, and categorized/rated. There are several categories of behaviors that are looked for and those being tested must meet criteria from each category in order to be designated as autistic.
To be diagnosed as autistic we must have struggles with communication, Social struggles, and rigid thinking with repetitive behaviors, (sometimes called the “diagnostic triad” of autism”
and today many diagnosing professionals also look for sensory processing struggles.
Most diagnostic processes begin with an interview that determines if we are candidates for autism testing. Most people receive “Comprehensive psychiatric evaluation” Tests may also include neurological testing, special tests designed to indicate possible mental illnesses (many individuals also receive other diagnoses or are already diagnosed with other conditions)
Tests are in the form of booklets/ paper, some are spoken questions and answers, some may be administered online using computer prompts and fill in style responses. There are basic questions about health and history, where you will be asked about your childhood and any early traits of autism you may have shown while growing up. Some facilities/ testing procedures ask for input of somebody who has known you for a long time , parents give input for small children, with older adults, their parents may have passed, they may not have a spouse, etc. or anybody who can speak of long time behaviors. this is not a rigid requirement in order to obtain diagnosis but is considered helpful to know. Some testing is done with tabletop manipulation of pieces to duplicate a shown image, some testing may require us to draw and image we saw previously, or to indicate which image most closely matches the one we saw.
I found the testing fascinating and was very interested in trying to figure out what the tests were trying to discover. We may be asked to draw a face, clock face, any other thing, we may be asked to play “word games” or to do things with numbers.
Don’t worry if you do not do well in some sections of testing, failure is just as informative as wild success, because it is all meant to understand how we think, how we process information or sensory input. Tests reveal strengths and weaknesses and those who are autistic frequently show extreme performance or extreme under performance in various places of the tests because of our uneven neurological development. The test is not “pass fail” but designed to show what our neurology excels with and what are true struggles for us. There is no shame in struggling with any test section or request to perform. I gave up completely on a couple of them, my brain simply refused to “go there” and what was asked of me was impossible for me to perform.
Thats OK, this is exactly what testing is supposed to reveal!
Testing and interviews usually last from 2 to 8 hours, and we may be asked to come in for a preliminary appointment interview and to come back for a diagnosis summary.
If possible, ask for a written diagnosis summary with test results. These can come in so handy for self understanding and for making self accommodations. Sometimes printed results take time to assemble and you may have to be patient or make inquiries at the office to make sure you get them, although in some cases, you are given these as part of the “follow up” appointment. Do not be afraid to ask for explanations or to ask questions.
If you are anxious before testing, or at any other time, do tell them, they will understand and try to help you get through it all.
Autism for beginners
basic info all in one place
Somewhere around eight years ago I began to suspect I was likely autistic. I had learned about autism when television began discussing it on daytime talk shows my mother was watching back in the late 1960s and the 1970s. I was born in 1951.
I thought I knew what autism was and that autism did not apply to me. (In those years only the worst struggles of autism were recognized).
By 1980 when autism was being added to the DSM I was fully adult, recently divorced and getting long overdue therapy to help myself after a lifetime of emotional pain and bad decisions. Getting therapy was the single best thing I ever did for myself.
Flash forward to 35 years later. I was married with 2 adult children, I had worked with autistic people, one of my best friends had a child with autism who was always in and out of the house with the rest of our kids, In my last job I had worked among autistic kids in a group residential/therapy home 8 hours a day, 5 days a week. I retired after over 50 years of struggles with keeping jobs, being bullied in every one of them. I still thought I understood autism.
Then in 2012 0r 2013 :
I was watching a TV documentary with my adult daughter one evening ( something I never do on my own but she finds this activity companionable). The program was about autistic kids in high school in Great Britain. I began weeping, shaking and sobbing and saying
“it was like that, I was like that” repeatedly.
Understand I almost never cry! It was soul shaking and totally unexpected.
Daughter consoled me and said “maybe you are autistic, too, maybe you should check it out”.
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I began to think that idea over but it was probably a year or two later when I began to actively search out information about adult autism. There was little information online or available in books, almost everything was aimed at parents with autistic kids. There were all sorts of claims about autism causes, cures, therapy, etc. and lots of mystic, magical thinking too. So confusing to sort it all out! I am a voracious reader and spent hours each day trying to learn all I could for better understanding. Today I still have a strong, fixed interest in autism and continue to search for new information daily.
I did find a couple of blogs and a couple of books but it was so very frustrating trying to get basic information as it related to adults, particularly to older adults, and as I became more certain I must be autistic, I decided it would be useful to others to find the relief I was finding by my self discovery. I am an information seeker and information sharer by nature.
I began to write a blog about my autism journey, my struggles to find diagnosis, to find self understanding, to find information and to learn more about autism itself.
I wanted to present as much basic information as I could in one place so that others struggling to find information and maybe awkward with doing searches or reading scientific studies, etc could get explanations and be assured that they were getting reliable information without being led down the multiple paths to “woo- woo” over unscientific understanding, miracle cures, speculation without documentation, fake therapies and so much more.
About 6 years ago I began this blog.
If you have read this far, please forgive me and understand I know very little about setting up a website, even making a simple blog. I know page numbers or an index would be a great help!
To read these pages in context and in order of posting, you must go to the bottom and read backwards. ( its a pain, I know, but I don’t know how to fix it!) I am not tech savvy, don’t have much $$ to invest, I am not making a profit or trying for one, I don’t ask for donations , I am not seeking “likes” for money or self gratification.
I am simply offering a story about what I have been discovering in my old age ( I am 73 as I type this on my old fashioned desktop keyboard). I hope it serves to provide basic information in one place and to encourage those elders who are suddenly suspecting they might be autistic and want to learn more. Diagnosis has been life changing!
I hope you find what you need. If not, let me know and I’ll try to find info about it and write another blog. I am happy to email with readers. My sensory processing differences do not let me do texting, phone calls, messaging, or other “real time” conversations effectively.
What you see here can all be documented and is known and proven scientific info.
I can give references if you want more information or to know I am not “making it up”.
I could have used some explanations and information very early in my life, but until I began to suspect my ASD in my mid 60s I didn’t have the least suspicion that my neurology was the answer responsible for so many painful “whys”, for so many failures where others thrived, so many awkward moments, so many misunderstandings.
What a relief to finally learn everything was not, after all, “all my fault” but that my different neurology was working behind the scenes in almost every painful incident of the past. Best of all I learned that there are others out there who can offer insights, explanations, information and understanding because they too have lived lives with ASD. Diagnosis can be life changing even in the very last parts of life.
Autism diagnosis Its OK
Its OK if others don’t believe in your diagnosis or accept it.
So, today let’s say I finally figured out “what is wrong with me”…….. I suddenly understood that I had different neurology, either through a sudden insight, long study, or professional diagnosis. I am autistic. I have always been autistic. It explains so many struggles of my past. I can suddenly understand a lifetime of “whys” by seeing how Autism had its workings behind the scenes and nobody knew! I am excited!
It is such a relief to finally understand that I am not wrong, or bad or morally weak or deliberately evil. My neurology has impaired my understanding in social situations, given me a tendency to misunderstand and miscommunicate, I may have other struggles, such as time management or organization skills that are not what have been expected of me. It is not my fault! My neurology has been to blame for my lifetime of struggles where others seem to thrive. What a relief!
I rush right off and tell my best friend, my family, my co workers and instead of being excited and happy for me, they scoff, saying “no you’re not”, “you can’t be autistic “because (a thousand reasons such as you don’t look or act autistic etc).
Oh, that was unexpected.
My mother does not believe I am autistic, says she would have known. My sister says I am trying to get attention for myself, my co workers say I am trying to escape my responsibilities and making excuses for lack of performance. Now suddenly I am devastated. They don’t accept my diagnosis, they don’t believe me! They think I am making it up, thinking I am doing this to cause trouble. Now what? How do I make them understand and accept my diagnosis???
Answer: I can’t, and I won’t even try.
Its OK for them to think whatever they want to think about my diagnosis.
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This experience is quite common among the most recently diagnosed individuals who want to share the exciting information they have just received.
I am here to tell you its OK if they scoff, if they misunderstand, if they disbelieve. Ignorance and stigma run deep. Its OK if they want to believe differently. You don’t have to explain, ask permission, educate, justify, or apologize.
The experience of becoming diagnosed may not change the way they think about you or the way they interact with you, or the way they expect you to behave, believe, think, perform, etc. . you may get acceptance and support but don’t expect that! Many people will want to cling to the old ways of interacting, their own beliefs and feelings of guilt, shame, misunderstanding may impede a healthy exchange of information. Its OK if they struggle with adjusting to or accepting your diagnosis too.
Diagnosis will mean a world of difference to you but to them, not much will change and they will mostly be unwilling to change to help make your life easier and better. That is human nature. Change can be scary for anybody.
They may even make remarks saying things were better, easier, happier, etc. before your diagnosis.
Well, for them maybe that is true, but their opinion is their business.
It is not our job to change ourselves or our own self understanding or our ways of self support and accommodation to suit their opinions.
Its OK if they don’t accept adjustments you make to your schedules and activities to remove the things that distress you the most, make you sick with anxiety, cause overwhelm and overload, or that are simply something that you have only been doing to please another person.
It is OK to give yourself your best self care, to dress the way that is comfortable for you, to use stims for self comfort, to choose something else besides the demands and expectations others have for what they want of you at any time.
Its OK to have your own agenda, your own enjoyment, your own independent life, free of their opinions and their pressure to conform to their demands, their anger, their manipulation, abuse, shame and blame.
Knowing about our autism sets us free to see ourselves not as losers, broken and incompetent, aggravating, infuriating, impediments to other’s lives, etc. After what may have been a lifetime of failed expectations of others we can finally be free to be ourselves in our own way at our own pace and in our own style.
Its OK if they accept and support your diagnosis as they see you making progress and finding life better and healthier as you learn more about your neurology and put adjustments for self accommodation into place. This may happen in many cases. Its Ok if they never do understand.
You do not have to have any other person’s approval or acceptance or permission to find self understanding and find a healthier way to live your own life.
Its OK to be who you are in the best way you can going forward as you sort it all out and make adjustments to make every day life easier and better for yourself..
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!
Autism and maladjustment or maladaptive behavior
The way we learned to cope with life may not work for us as adults
Autism works in us, and in our worlds in many ways from the day we are born to the day we die.
we have many struggles, most not visible to any human perception, which cause us to expend more energy, try harder, fail more frequently, cause us endless frustration, exasperation, shame and self blame.
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Many of us grew up with our autism working “behind the scenes” and we as well as our family/caretakers/ teachers, peers had no idea why we perpetually failed to perform as expected. Most of us learned coping behavior of many sorts to deal with the constant negative input surrounding our “failures”.
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Self blame, shame, aggressive self defensiveness, avoidance, mimicking behavior and camouflage, hypersensitivity and reactive behavior , including substance abuse, emotional or physical abuse and violence to others.
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Many to most of us reflect adaptation of our behaviors common in trauma responses, fight, flight, freeze, or fawn/appeasement.
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We may have dysfunctional family behavior patterns going back generations and including physical abuse, drug or alcohol abuse, fights and arguments, estrangements, lack of emotional care or neglect of children, and so much more. Unhealthy patterns are for the most part learned and can be “unlearned” and replaced with new and healthier behavior.
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I have come to the conclusion that autism hidden in many families includes parents, grandparents, siblings, and cousins, aunts, uncles, etc. who may also be autistic, in older generations like mine, there may be years of “handed down” learned behavior patterns that helped families live their lives (unhealthily in most cases) and simply survive around undiagnosed autism. I bet if you think about it, you can see the unhealthy family patterns of your own experience. Nobody knew!!!!!!
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The survival techniques we learned as children in such unhealthy homes rarely work well for us when we reach adulthood. Many of us have lived long and painful lives trying to use unhealthy behaviors we learned to survive in many cases even before we could speak. We may not have any idea at all that we have choices we can make every day in the way we choose to respond to others and how we may react to others in any situation.
Here’s the good part about this heritage of unhealthy learned behavior:
We can “unlearn” it.
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I was stuck in a rigid pattern of trained response to the demands of others, and I never had a clue that I had alternatives that I could choose in how to react or respond in any situation. I had to have an outsider point it out to me. I had to have “how to do it” explained to me. I had no insights or ideas beyond those I had been taught and clung to throughout my abusive childhood to survive.
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With the help of a therapist I was able to learn healthy communication, how to set boundaries and enforce them, how to recognize when I was being used, intimidated, manipulated, abused, and how to defend myself in healthy ways by making better choices and choosing from several responses that were healthier than the learned automatic responses I had learned through trauma as a child.
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Practicing new techniques and consciously applying them was very emotionally scary at first but as I gained skill through practice, I was able to become independent, make my own healthy decisions, and defend myself from unhealthy demands by others.
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I believe if I could do it almost anybody can.
Getting therapy to learn healthy communication and decision making was the best thing I ever did for myself. Therapy saved my life and my sanity, and it was not until 40 years later that I discovered the autism that worked behind the scenes in my own growing up and family life.
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Even without your therapist knowing about your autism, you can learn and grow new skills to help you interact in healthier ways for the rest of your life. Ask your therapist to teach you healthy self assertive communication , how to set boundaries and enforce them, how to make healthier choices.
There is no shame in reaching out to learn things others can teach us, there is no shame in recognizing that we need new “tools” to live healthier every day lives, and no shame in asking for help to do that.
What we learned in the past may not be serving us as grown adults, and we have so many new and different choices in tools we can use, we might just need somebody to help us learn “how to do it”.
Hope you find what you need. Don’t be afraid to explore the possibilities!
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)
OldLady With Autism 