Do you have an escape plan? You should have one
Survival technique #1. To avoid overwhelm remove yourself from the situation as soon as you notice you are feeling overwhelmed, stressed, or distressed.
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This is a sort of “insurance plan” to make sure you do self care for yourself immediately instead of trying to tolerate something that causes you to feel overwhelmed, upset, afraid, distressed. Meltdowns and shutdowns happen when we have too much input and our processing systems can’t keep up.
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In long experience with my spouse, I know I can tell him I am headed to the car, outside in the yard, to the back of the building, the washrooms, or any other place to remove myself from the feeling I will soon be overwhelmed in a new or different place.
I have escapes built in at home with my quiet place and comfort items, and I can go indoors or outdoors at will to avoid input I want/need to avoid.
I mostly don’t venture out of my comfort zone, and I am old enough and experienced enough at my age (73) to detect the signs and to be able to avoid situations which may be distressing to begin with. I almost never subject myself to overwhelm just to please somebody else or because doing the “thing” is expected of me.
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Sometimes we can’t avoid being in such distressing situations, where there are things we must do, places we must be, etc and for some reason other ways can’t be substituted. If you are headed into the unknown, make a plan ahead of time.
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Arrange with others ( if you are accompanied) ahead of time so if they can’t find you, they know where to look. You will have gone to your “safe place”. If you don’t have an escape plan or have never used one, its time to think about this handy self accommodation/ self care technique and put it into action.
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There is no reason to subject yourself to shutdown/meltdown/overwhelm or expect yourself to endure painful or upsetting experiences just to please somebody else. Self care always first; make sure you have a backup plan when you venture into potentially upsetting territory, then make your escape knowing it is understood where you will be found if you need to shelter yourself from too much physical or emotional input.
Actually Autistic
Part of the “nothing about us without us movement”
From a discussion on one of the forums I attend. Somebody was confused about the tag “actually autistic” and I thought I’d try to clarify the origins of the tag and the intent behind it.
Several years ago it became evident that autistic individuals had very little voice /participation or input over studies being done, results being published in papers and stated/accepted as facts, etc.
The world of active outspoken support for the handicapped population had generated the phrase “nothing about us without us” to protest and point out that handicapped people were not consulted or informed about decisions made in medical and governmental (and social contexts too) regarding supports, research, etc.
Autistic people began to speak up using that phrase. ( nothing about us without us) At this point autism awareness was growing and the autistic neurodivergence movement was forming. From the clinical medical viewpoint of autism being a defect that needed a cure to one of acceptance and support for those of us who differed from the majority in the way we function. “Actually autistic” became a way to show we were speaking up for ourselves and that parents, scientists, teachers, therapists, and the whole world of neurotypical individuals whose voices had dominated the information sought and provided, the support from the government, the rules and regulations and other aspects of our lives.
Instead autistic individuals began participating in these decisions and declaring our autism loudly to those who talked over us and thought they knew what was best for us without actually knowing or understanding much about autism from the autistic point of view.
Autistic people are not using “actually autistic” to differentiate between self identified autistic individuals or declare themselves superior, it is a call to be heard as individuals in discussions about our issues, our status, our treatment (both social and medical), the research that is being done , the often mistaken ideas perpetuated about those of us who are “actually autistic” .
I have not used the phrase, although I gladly participated in interviews with the administrator/ of a page with that name. Actually autistic voices must be heard and valued for the information and insights we can provide. “Actually autistic” used in communication simply identifies us as our selves and shows that we too have perspectives, insights, and experiences that must be included in anything done “on our behalf” or “for our own good” .
Keep speaking out and identifying yourself as “actually autistic” with or without using that tag.
We are being heard and little by little the full range of autism from those with the most struggles to the “highest functioning”. There is no clear dividing line between us, many gifted people struggle every day with overwhelm and dysfunction in parts of their lives too.
Speaking up for those who cannot communicate for themselves is so important when major decisions about care, support, aid, education, etc are being made today. I am “actually autistic” even though I do not have that tag on all my communications.
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!
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!
Autism and Elopement
Escape or exploration?
Another “aha” moment for me. ( they are still coming even after 5 years past diagnosis)
I have been reading information about “elopement” that sometimes accompanies autistic behaviors. Most articles are yet aimed at controlling children and keeping them safe.
Autistic children get lost /wander and have fatal accidents at a much higher rate than the general population of children. These children seem to fall into two categories – escape or exploration.
Those who seek to avoid something will leave the triggering situation or event/ sensory or emotional overwhelming experience. “runaways” fit into this category. They seek to escape anything that makes them feel desperate to avoid the input they are experiencing, whether noises, crowds, punishment, scolding, rules of the household, school, etc etc. Escape is flight response to trauma and instead of concentrating on the action of the child (or adult!) One must also look at what triggers this response.
I am going to guess that the individual in flight does not know there are other alternatives to this “response” behavior.
Feeling unsafe and/or inadequate to cope are huge activators of the flight response. I use a controlled flight response to remove myself from any distressing experience, excuse myself as soon as I recognize my discomfort and leave the situation to my “safe place” where I can gather my resources and get myself composed in security and in privacy. I plan ahead for “safe places” when I travel or do things outside the home. In many places, I return to my car or a public bathroom, etc. I recognize that my primary response to any upset (response learned from early childhood trauma) is flight. See information about “fight, flight, freeze, and fawn/appeasement” as responses to trauma.
When I was isolated for punishment/ scoldings, being chastised and blamed/shamed, as a pre teen and older, I would leave the house and not come back until supper time when the family would be distracted and gathered together, my father being present, and my mother would not scold me in front of the others. (she chose to abuse us privately with no witnesses. until very recently I had thought I was the only one in the family this had happened to! -I am 73 and learned this from my sister). Mother was pleased to tell me she was going to put me in a “home” if I didn’t change my ways and I understood that she did not want me and did not want to deal with my disobedience/ displeasing autistic ways. I believed she never loved me and was focused on finding new ways to blame and shame me, looking for more ways in which to tell me how bad I was, how immoral I was, how lazy I was, how thoughtless…. the list could run to several pages… I simply could not please her. She seemed to look for excuses to make me feel bad. So I eloped to escape her.
I chose an abusive first spouse, who followed almost exactly the same behavior of family patterns that were already established and which I had learned all my life. We seek what we know and are comfortable with, so no surprise I ended up in exactly the same situation ( but even more abusive) when I left the nest upon my first marriage. I ended up in flight several times within the framework of myrelationship even before marriage. I simply did not know how to find other ways to deal with the misery. I attempted suicide as escape finally.
I had been depressed and anxious since age 8 and finally at age 29 I took that step. It was purely desperation to escape the situation and in my mind there were no other alternatives. Inflexibile thinking/ rigid behavior learned as a child kept me from finding or understanding I had many choices and alternatives. I had to be taught “how to do it” , an outsider had to explain in great detail exactly what I had missed as a child growing up in that unhealthy household. There were “no ways” besides what I had been raised to, I simply could not imagine alternatives on my own.
I was rescued from the suicide attempt and told that I would go to jail if I did not get psychiatric help/counseling. I tried 4 therapists before I found one who “got me” and who finally was able to reach and teach me the healthy communication and decision making techniques to survive in the world outside of the sick patterns that I had learned in my family growing up.
Therapy saved my life and my sanity! Having alternatives and choices to the way I respond to any individual every single time, besides the ways that had been “programmed” into me has given me healthy alternatives to flight as a response to overwhelming experiences.
Learning that I have options in my choices of response and planning ahead of time for ways to “flee” or escape from overwhelming situations has kept me safe now for over 40 years.
If you are prone to suddenly exit upsetting situations, leave your home under duress, leave work, gatherings, or other overwhelming situations (anger from a boss, spouse, friend etc for example)
consider getting therapy to learn new ways to deal with distress and overwhelm. I believe that we as adults can learn to do this.
Look for a therapist who can help you learn healthy communication and decision making skills with less probing into “feelings”. The first 3 therapists wanted to talk only about my “feelings” “how does that make you feel” sent me into sobbing spasms “I dont know” was the best I could respond to any of them. I can still remember the distress of trying to figure out what this oblique suggesting meant, what I was supposed to learn by re-living so much pain and trauma. I could not get any of them to explain, they just wanted me to “think about it”.
I guess I was supposed to figure it out for myself (then why were these people there?) My rigid thinking in those days before diagnosis simply did not allow me to see implied lessons or to sort cause and effect.
It was such torture to go repeatedly to re-live trauma without any explanations.. It was such a relief to find that 4th therapist who “got it” and could see what I needed, explain to me, and teach me the skills I needed. The process of finding a good therapist alone took me about 2 years. All that emotional pain for all that time did nothing to help and is still so upsetting to remember.
I hope if you struggle with elopement due to distress (and you might need to think about this to see the patterns in your life surrounding this issue) that you will look for new and healthier ways to deal with these events. I do believe it is something we can learn. If I could do it I believe anybody can.
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About “wandering”. First, it does not make sense to me to classify evasion elopement together with exploration elopement. They really are “something else” with entirely different motives and objectives.
I am a wanderer, but was never a wanderer as a child because of strong restrictions laid down since infancy… I learned to stay put, whether in a chair, on a rug or piece of furniture, or to stay in the fenced yard we had by the time I was 8 years old. Those boundaries were well defined and I could not leave without permission for fear of punishment. Fear has been a great motivator even before I could speak and worked well to “keep me in line” when small.
But once I began to walk to school, I dawdled and took “alternate routes” home from school, often arriving well after my sister, who attended the same school. We walked for a while together to school, but I don’t remember a single walk home from school together.
My mother did not drive, and she had 3 other younger kids to take care of, so I was free to take my time and explore on my way home. I got scolded when I arrived late each day but it was worth it to be free from anybody else’s demands and to be alone for that short time each day. In a family home of 6 there is mostly chaos, and very little peace or privacy.
As a teen I was allowed to leave the house, and I spent hours and hours walking all over our small town, sometimes even exploring country roads. I walked for miles every day and my favorite long walks were after dinner as it became dark, I left the house and walked until my curfew… I think the parents were relieved when I was gone and did not object, and I certainly was able to relieve my considerable anxiety by the stim of rapidly walking for miles and miles.
Many times when I got home, the rest of the family had already gone to bed. It was peaceful and safe to slip into the house and make for my bed in the dark and the quiet.
Today I walk the shorelines and the wooded trails near my home as often as possible. I have strong curiosity and appreciation for the natural world and these forays bring peace and enjoyment as nothing else can. “Alone time” is so very important to me, as is the activity of walking which I rely on for release of energy and to help find my emotional center while satisfying my curiosity about so many things in nature’s realm. I believe walking is a “stim” for me.
Small children wandering are often exploring, or trying to find a way to get to an experience they would like to repeat (a trip to the beach, to the favorite fast-food restaurant, to grandma’s house? Wherever they want to go. Kids who leave the house alone at a very young age while unattended may simply be exploring or trying to find stimulation, satisfy curiosity, or to find other ways to interact with their surroundings.
Plans can be made, and precautions can be taken to prevent wanderers from leaving unnoticed. We had to put complex latches high on the doors in our house when our children were small. We learned tricks to keep them with us in public unknown places, we found ways to work around the sudden impulse (in our smallest it was sheer energy and exuberance combined with impulsivity- ah if we could bottle that energy)
As adults we have the ability to choose when and how we wander (unless we rely on others to make this happen for us).
Have you ever experienced elopement personally or in others close to you? How did you deal with it? What alternatives do you have to help keep safety first and still provide the release that is needed for escape or satisfaction of the need for motion, the stimulation of curiosity, etc.? there are loads of articles “out there” about preventing elopement and about enrichment experiences.
I had forgotten all about my “running away” until recently. Little by little, the aha moments are decreasing as I gain better self understanding. I hope this is true for you too.
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.
Autism anniversary
happy autistic anniversary to me
Five years ago, on Sept 30, 2019 I got my autism diagnosis, just 3 days short of my 68th birthday.
What a whirlwind of emotions!
Relief, validation, shock when I began to realize and recognize how impaired my day to day functioning actually was. I re-lived so many instances of painful struggles and saw with a fresh perspective how hard I had tried and how much anger, hurt, punishment, constant criticism and focus on my repeated failures over the years had deformed my life and my self image. I am a true survivor!
It was good to know that all those years of shame and blame for failing to live up to other’s expectations were not actually “all my fault” but autism had been working behind the scenes without anybody knowing. My different neurology made life much more difficult without my understanding how or why.
I have spent the last 5 years (and several years before that) trying to learn as much about autism as I can and sharing it here and on my Facebook information page (Autism for Older Adults)
Today I have mostly worked through issues of the past and found self-forgiveness, forgiveness of others, and a lot of peace and healing.
I have been able to make many adjustments to the way I do things in daily living and set limits on things I do that cause me struggles. I still do things to please others but I choose how and when and who I try to please and appease. (see fight, flight, freeze and fawn (appeasement) as responses to trauma)
Formal neuro psych assessment and subsequent diagnosis summary reports have helped me see my worst weaknesses and my best strengths and I have been able to use those insights to adjust daily life (self accommodations) for ease and comfort without needless struggles.
I can tell you from this side of diagnosis that things do eventually settle down and that we can find new ways to live life that bring less distress and a better feeling of safety and competence, a new self confidence. I have found peace and a sense of safety I had never experienced before.
Of all the remarks about my autism diagnosis from friends, etc., I have mostly got comments about my new self confidence. I am not as afraid, I am not as confused, I am not as distressed and emotionally exhausted.
For those who are seeking diagnosis or recently diagnosed, please do your best self care as you begin to sort the past and present from this new perspective. It is like culture shock, and everything we thought we knew, understood, believed about our world, ourselves, our past and our experiences is thrown into new understanding. The older we are at diagnosis, the more we have to sort!
I believe that today I have the best life, the best self understanding, the best perspective, the best tools to use to go forward to my (limited by my age) future. What a wonderful thing it has been to get diagnosis and finally find out what most individuals understand between the ages of 10 and 19. I had no idea!
The past 5 years has been filled with healing and improvements to everyday life. There have been so many “aha” moments as a new insight suddenly clicked and I was once again able to see how autism had been working in my life all these years.
I hope you find what you need to obtain diagnosis or confirm self identity as autistic.
I hope you will do the difficult emotional homework and look for new ways to adjust your new-to-you life as an autistic individual.
For me, diagnosis has been life changing and all for the better.
You are not alone. So many of us have struggled for years before we learned of our autism. There are others “out there” who understand. What a relief!
OldLady With Autism 