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: autistic elders
Autism Escape Plans
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.
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 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.
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!
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)
Why is social isolation “bad for you”?
isolation, loneliness, autism experience is likely different, or is it?
In searching for information about autism and older adults, I keep finding generic articles and “studies” aimed at proving that if we are not interacting with others socially on a daily basis, we are more likely to die sooner, more likely to suffer many illnesses, more likely to have mental problems, etc.
It doesn’t seem to have crossed any of the presenter/ researchers minds that we may have had these troubles and problems before, rather than as a result of isolation/ loneliness.
It does not take into account at all those few of us who choose to separate ourselves from others as part of self care. (perhaps those of us who do this are statistically insignificant?) Not all autistic individuals deliberately self isolate, many enjoy a lot of social activity of all sorts.
First, I had to find out how ‘science’ defined social isolation.
here are some definitions I uncovered.
“lack of social contact or social support”
“Lack of sense of belonging, lack of sustained communication or interaction with others,
deficient in fulfilling, quality relationships .”
Loneliness is defined as ” feeling alone, isolated, perceived discrepancy between desire for contact ( wanting social interaction) and actual social contact. ”
So there is no measurable quantity or number of contacts, in what contexts, defining how frequently or of what nature, saying “this is enough”, ”this is unhealthy”, ”this is good for you” etc.
It is all vague and seems to be based partially on the perception of those doing the “studies”. Question tests have been developed. ”perceived level of support from family and friends” test asks ”How often we see or hear from others, How many others?”
”How many of these contacts do you feel you can talk about private matters with”,
and ”who/ how many of these contacts can you ask for help?”
Then there is the little test: ”do you feel lonely?” 1 Never, 2 sometimes, 3 always.
I remember being told over and over that my mother in the nursing home needed social contact with others, and they did not allow inmates confined there to stay in their rooms. It is so unhealthy!!!
Residents were warehoused in a large multi purpose room with tables and chairs, where the staff were present, up to 2 for the 40 or so individuals confined there.
The TV was turned on, blaring, and piped in music played constantly from loud speakers in the ceilings.
There were very bright fluorescent flickering lights, constant babble, screaming, crying, and roaming of individuals.
There were scheduled activities for those coherent enough to understand, exercises in the morning, simple crafts, ”baking” on one day, fingernail painting another, ”games time”, and tea parties, socials, dress up days, something every morning and afternoon every day.
I was distressed and anxious knowing I was expected to attend these things and had to take tranquilizers each time I went to visit or participate just to function in that setting for the 3 or 4 hours I was there.
This was long before I understood my own autism and eventually after I was diagnosed, my mother’s autism as well. Knowing may or may not have helped!
I think the claim of “having to have social interaction” is a good excuse for warehousing populations of elders and keeping them confined while the business of cleaning all rooms, collecting and distributing laundry, feeding and washing/ dressing individuals goes on with very limited, over worked, underpaid, limited staff.
It is a claim to justify warehousing ‘management’ technique.
I can’t say this is true for all nursing facilities but it certainly happened in the facilities where my mother was confined ( she had dementia, Parkinson’s, other health problems that needed constant attention, and she did not sleep at night, making it impossible for me to care for her at home). Mother was confined to a “memory care” unit which was locked to keep inmates from roaming and getting lost.
Of course each individual needs different levels of interaction with others.
I think those of us with autism may choose deliberately to self isolate to control anxiety due to constant over stimulation, feeling more comfortable in our own company than that of strangers, multiple others, group activities, or demands for social interaction which frequently overwhelm us.
For many others, it may be true that social interactions of the kind described earlier are fun and enjoyable, desirable and sought after. Such studies and tests may be aimed once again at the neurotypical population.
But I wonder deeply at the motives behind such testing and classification of individuals, and I worry about being lumped into the mix, with my loved ones being told “it is unhealthy” for me to be “isolated”. Who gets to define what isolation is?
Who defines what my level of loneliness is, and what self care and self regulating behavior is healthy, meaningful, useful, and who gets to decide how lonely, distressed, and impoverished I might be if I am placed in a situation where so much mindless overwhelming activity and stressful expectations are parts of every day life, multiple times every single day. ????
As I age and health issues creep up on me as a part of ageing, these things weigh more heavily on my mind.
I have had a talk with my closest family members, defining what I hope will happen if I am ever unable to care for myself or make decisions for myself.
If you are older and looking at end of life issues, it would be a good idea to become a self advocate and let others around you know exactly what your wishes would be in any number of possible situations.
Knowing about my autism has allowed me to find new perspective on my past, my own behavior and my strengths and weaknesses. It has allowed me to look at the future in a healthy way and to plan for eventualities.
Most people spend at least 30 days in hospital or nursing homes as their end days approach. Plan now, prepare for the worst, hope for the best.
Let others know what you think about these times of our lives.
Autism and Maladaptive Coping
(when we learn to defend ourselves against life in unhealthy ways)
Ok, so first, what does “maladaptive” mean?
Maladaptive is a description which means “bad adaptive” and it refers to the unhealthy ways we may learn to cope with our life situations.
Maladaptive behaviors are those which might have worked at one time to help us escape some of our struggles.
We develop poor coping skills in self defense, especially when we must find ways ourselves with no guidance, input, insights or role modeling from others to help us.
Maladaptive thoughts or beliefs may be ones that we used to explain our struggles and reasons for the conflicts, misunderstandings, or other troubles in our lives.
Most of these behaviors, thoughts, and beliefs are learned when we are quite young.
Maladaptive thoughts and behaviors are not exclusive to autism, anybody can develop them, but perhaps because of autism’s struggles with social interactions and communication, we may tend to develop such self protective thoughts and behaviors more frequently.
I just read a paper which polled psychologists working with autistic individuals and all of them said they had never met an autistic that did not have some degree of maladaptive behavior and/ or thinking.
This would especially be true for those who did not have positive role models, explanations, and emotional support in our lives, or those of us who grew up in unhealthy situations where poor coping or unhealthy behavior was present to begin with.
Examples of maladaptive behavior would be fearful or aggressive behaviors (meeting every life challenge with fear or anger), belief that we must always please others, that it is our job to see that everybody is happy, that we must strive to please, to make sure nobody gets angry with us, that we are always wrong.
We might think that others are always wrong or “against us”, that nobody is responding to us when we want them to or in ways we want them to, so therefore nobody cares!
The list goes on.
Maladaptive behavior can be self injury or addictive behavior/substance abuse, enforcing and insisting on rituals or certain other ways to comfort or “protect” us.
We might believe that certain people or groups of people are out to get us, hate us, or are otherwise the cause of our problems.
We might think that if only we found a love partner, lived in a certain place, had a certain job or a certain possession, won the lottery, our lives would be changed and everything would be the way it is “supposed to be”.
You can see how complex and varied these maladaptive thoughts and behaviors can be.
With nobody to advise, explain, guide, mentor, we have been left on our own to figure it all out and most of us simply did the best we could to survive. Most of us got some of it wrong!
The good news is that once we are aware of our unhealthy thought and behavior patterns, we can work to replace our old thought and responses with newer and healthier ways.
Like any habit, we can learn new ways to do it!
I had a number of maladaptive thought patterns and behaviors that I had learned and used over my early life time.
The family I grew up in had many poor coping skills and patterns of manipulative, shaming and blaming behaviors and thoughts.
With the help of a counselor I learned to recognize unhealthy manipulative and coercive communication and replace it with healthy self assertive communication , and how to defend myself against such behavior and communication from others.
I learned that many of my beliefs about my self, my life, the way others treated me, the things that happened to me, were unhealthy and simply not true. I had to learn about the actual nature of healthy relationships, healthy behavior, healthy self care and setting boundaries, and so much more.
Many young people learn, or can see these things for themselves as they grow and mature, and many others may need help, guidance, explanations and coaching to find healthier and more productive, less emotionally painful ways to live life.
Looking back on my early years, I can see how absolutely desolate of life skills and insights I was, as autism, my unhealthy childhood ‘roots’, my unhealthy maladaptive beliefs and lack of the tools I needed to interact in healthy ways with the world around me was disabling and painful.
I could not find my way “out” without an outsider to help me understand and to see where the behaviors I relied on to survive were no longer working and that I could replace them with other more functional and effective tools which I could use every day to have a better life, better relationships, better understanding of my world.
If you are struggling constantly, are in emotional pain, if you can’t find a way out of your daily misery, anxiety, and emotional pain, I urge you to find a life coach/ therapist/ counselor or mentor to help you sort the coping tools you are using, discard the unhealthy, maladaptive ones, and replace them with better ways to move forward in life.
If I could do it, I believe almost anybody can. It is emotionally scary. for many of us, it is almost impossible to see or say “I was wrong” in my beliefs, in the way I tried to handle things, in the ways I learned to cope.
I was wrong ,as in mistaken.. yes, not bad or shamefully wicked, not to blame : I had used the only tools I had available, that was not my fault, it is not yours if you are not coping well, either!
I got a new box of tools, and I haven’t regretted it for one moment. Life has been so much better!
Join me, won’t you?
OldLady With Autism 