Autism Emergencies

The importance of being prepared.

I can’t say this is about autism specifically, but being autistic and elderly has made interactions with others harder for me than it might be for some people.

In mid March 2020 my husband had a health emergency which took us to the hospital Emergency Room.

In our state of the USA, Covid 19 precautions had just been enacted.

We were screened for that from an isolated hallway, as well as having to give a summary of what my husband’s problems were. We provided proof of insurance and established that I was his spouse, his representative, and his power of attorney for health and everything else.

I was allowed to wait with my husband while he was seen and tested by many different medical people, until he was finally admitted for emergency life saving surgery.
I was allowed to stay while the operation took place and after, I saw him in recovery, and followed him to his room and saw him comfortable. I saw him again early the following morning. At that point rules had changed for Covid Isolation in Hospitals. I got a call saying I could not return to the hospital to be with him.
I was not allowed to see my husband again until he recovered enough for me to pick him up and bring him home. ( I stayed outside of the hospital, in my vehicle, he was brought to my car in a wheelchair).
We were lucky because he came home alive and continues to be well.

Things like this can happen to anybody and at any time!
Some time ago, we had made each other Power of Attorney and Health Care Power of attorney, filled out a living will making each other designated decision maker/ representative if health care decisions were needed and the individual as a patient could not respond for any reason.
We made our wills at the same time.

Today I see we made good decisions to have these issues settled while we were in decent health, decent mental condition, and not in crisis.
We could discuss everything regarding our health issues, willingness to accept life support, choices surrounding “do not resuscitate” orders, etc. We could decide who we wanted to include in our will, how we wanted our “worldly goods” distributed, make special mention of the family special items and who they should go to, etc.

If you are alone and do not have family or spouse or others to speak for you, it is most important that you have these papers showing intent and giving the persons you trust the power to help you through health struggles if you ever need it. Alternatives would be next of kin, no matter how far removed, or to have court appointed guardians or your individual health care providers making decisions regarding your situation on their own. Didn’t want to spend the next 10 years on life support in a coma? Without directives and representatives, you might not get your way.

If you want to assure your best interests, it is important for you to make those choices and decisions for yourself or have available somebody who you trust , and who knows what you want, to help you.

When I was my mother’s caretaker/ representative and we had to travel, I carried copies of all the papers we needed, as listed above, plus her medicare/medicaid/insurance papers and copies of her social security card, a list of her medicines, her meds for the day, a change of clean clothing and other needs all in a backpack that I could put over her wheelchair handles.
When I had to meet the ambulance at the hospital to have her admitted for frequent health crises, I had everything I needed to assure she got the help she needed and was her spokesperson and caretaker while she was in hospital ( Parkinsons’ dementia, autism, etc made it necessary for somebody to be attendant with her at all times.

The point of these illustrations is that we don’t know what the future might bring, but we can make any crisis we experience easier to deal with by preparing ahead. Please consider how you want to be helped, who you want to help you, and what you will and will not want “done to you” in any health crisis. You will have peace of mind and you and your Representative/Power of Attorney will not have to wonder if they did the right thing. You are more likely to get the care you need if you speak up about things that are important to you while you are not in the middle of a crisis.

Just another set of tools you can use.

trauma,anxiety, hyper-vigilance and negativity

An anecdotal comparison between me and my hamster to make a point about negative attitudes.

When I was in middle school I was given a hamster to keep as a pet. She had been used as part of a study done by a college student, where the hamster was administered random shocks and studied to see if its behavior changed.

When I first got her I named her fang.
She had a tendency to bite whenever touched and I had my fingers full of puncture wounds soon after I got her. I understood she bit from fear and self defense and spent a lot of time handling her gently ( and went through a lot of band aids).
Time went on, and she was easier to handle. Unless she was suddenly startled or experiencing anything new, she gradually relaxed and allowed me to pick her up and carry her, place her on my self- in pocket, my lap or on my shoulder and even began to accept offered treats. I enjoyed her company, took pleasure in her progress, even raised a litter of babies. Very positive experiences and gratifying that I could help her overcome her fears and feel safe.

When I was a very small child I was subjected to sudden punishment regarding things I did not understand. I was easily startled and frightened by anything new, any sudden action, sudden motion, sudden change, and overwhelmed by anything I saw as aggression or threatening toward myself.
I was acutely aware of others around me, watching always, wary of threats, bullying, intimidation, mimicry, examining every interaction with the certainty that people intended to harm me, to hurt me, to frighten me, to cause me emotional pain.
I developed huge anxiety, looking out for these assaults, whether physical, emotional, or threatening or suspicious behavior that could overwhelm. Any human interaction seemed to hold this potential.

By age 11 or 12 I was constantly angry, and ready to strike back. I was defensive over every question asked me, and for a while I was willing to confront and engage with others in rancorous disputes (especially the sister I shared a room with).
Sister almost always called our mother in when she thought she was not going to get her way.
I always lost the engagements and was frequently punished by my mother and made to “make amends”, etc for any argument we might have had. Usually it was about my sister wanting me to share something of mine and my refusal. My mother thought I was selfish and made me give or share whatever it was my sister wanted me to share. This was true for the way I was expected to act with others in the household… my other younger siblings, and my parents. Submissive obedience was the only response tolerated under any circumstances.
I felt I could not win and simply gave up. I had no rights, nothing I owned was mine alone to enjoy, no place I could go for privacy, others could come near me and pester, annoy, fight with me , there was no escape until I learned that I could go into the corner of the basement with spiders, mold and water on the floor, and that most of them did not follow me there.
Enter depression. I had been trained in hopelessness and helplessness. I had no alternatives.
I began contemplating being dead around 5th grade, and it seemed a good quiet peaceful place to be. I began to hope I would die every night as I went to sleep. ( If I die before I wake, I pray the Lord my soul to take) . It was a fervent hope, I had been told Heaven was a goal we should aspire to.

I had no resources or tools to understand anything but appeasement. I tried to please others and to stay out of their way.
I have since gained tools, understanding, and independence from being micro- managed and controlled in every thought or behavior.
I have learned to love myself, perhaps that has been the hardest struggle of all.
I didn’t deserve happiness, I was not worthy of anything but abuse. I learned that early on and it was difficult to change my viewpoint.
It has taken me almost 40 years to overcome the 18 years I lived at home and finally all these years later to understand what my autism contributed (and my mother’s) to the mix.

At home I learned to expect nothing but negative consequences, to be on the watch for anything that hurt or threatened, to expect to be treated unfairly, to feel discouraged and overwhelmed and to wish I could escape these feelings.
I spent many miserable years from age 11 or so until I was 30 expecting the worst from everybody, feeling overwhelmed and trapped with my back to the wall, expecting each encounter with others to result in my hurt or harm. I had a negative attitude toward everything. I refused to do anything which I even slightly expected might put me in a spotlight for shaming, humiliation, being degraded, corrected or punished. I believed everybody was out to get me.

I don’t know to this day if it was rigid thinking, my autism keeping me from seeing positive experiences or appreciating them. I don’t know what proportion of my life as a child was actually spent being harassed, degraded, attacked, punished, and humiliated, ostracized, ridiculed, tormented, or bullied. It felt like “always” to me. I felt I could never feel safe.

I do know I felt that being under attack was constant and unrelenting, and I was as a usual state sad, emotionally exahusted, withdrawn or angry and defensive because I was in emotional pain.
I could not do a thing to help myself in my family circumstances and status. I had no idea how to help myself.
Family members and others avoided me because of my negativity. I frequently expressed the idea that I could do nothing right, that everybody hated me, that I could not do the things expected of me.
“Stop feeling sorry for yourself”, “A person is as happy as they make up their minds to be” “pull yourself together and get on with it” “shape up”.

None of those constant remarks gave me the insights and tools I could use to help myself do better.
I never got the supports I needed. If anything these comments added to my misery and my belief that maybe it was all my fault. It convinced me further that I was nothing but a pain and misery to others and that they would be well off without me. ( all sentiments from my parents and others which were frequently expressed as well) .

Skip to today.
I finally got counseling in effective communication and how to make healthy self assertive choices at age 30.
I removed myself from my toxic family and their insistence on my playing the role of black sheep and scapegoat in the family behavior patterns. I could not change their behavior, but I could change the way I responded to it!

I began to make healthier choices and somewhere along the line a lot of my defensiveness and anger left because it was no longer needed.
I learned about negative thinking and tried to look at things from a positive angle.
Even the worst experience had a sometimes positive result ( learned what NOT to do!).
This persistent refusal to look for negative things in my life, to consciously change my outlook, eventually resulted in my ability to see things from a healthier perspective. Learning of my autism was the single best thing that has ever happened to me in terms of self knowledge and finally understanding whys of all the pain of my younger years.

I know now a lot of my negative thinking had been habit, and maybe appropriate for my situation as a helpless child. I could not see beyond my fears and my inability to cope with demands made upon me. I only expected pain and misery because I did not have understanding or teaching from others about how to avoid these experiences or to make them better. Perhaps in my particular family situation I truly was helpless to do any other thing. It seems like that looking back, but I don’t know how much of my experience has been actual, and how much my autistic processing difficulties interfered with my understanding. Probably a lot. For me, the life I lived in my understanding of it WAS my reality.

I am happier now at age 68 than I have ever been. Knowing and understanding my autism and how it affected my early life has been a key to giving me peace.

Parents, if your autistic child becomes hostile, angry, depressed, defensive, argumentative, or negative, consider that they might not be seeing anything but the pain that they are suffering because they struggle to be adequate to their experiences. Something or some things are causing them emotional (and perhaps physical) or mental pain, anguish, frustration and they are feeling inadequate to meet the challenges.

Provide tools… please, provide explanations, assurances, positive feedback as much as possible. When an autistic child is struggling, please consider testing to find which neurological struggles are the worst and use therapy to find new ways to build skills, knowledge, and understanding to do whatever is expected of them.
Consider family therapy too, so everybody can learn better ways to interact with each other.
Look farther than throwing the blame on the individual, and expecting them to magically understand to do whatever it is you expect of them.
Look at how you can help understanding, support progress and insights, give opportunities to build skills and grow emotionally. Explain everything in small steps, explain how, why, where, when, who, and every other small detail over absolutely everything. It is absolutely essential to an autistic child’s understanding. IF your child displays anxiety, overwhelm, defensiveness, anger, and negativity, see it not as that child doing everything they can to cause difficulty, but as an urgent need to change something that is happening in his or her life and teaching skills to cope with or adapt to that circumstance or set of circumstances.
Our sensory processing struggles and rigid thinking can sometimes be a roadblock to understanding the “big picture”. We need help seeing the way, we need tools, life skills to do our jobs (growing up!) and need specific concrete explanations about why and how to deal with so many new situations as we experience them and attempt to learn about them. Please make sure your child gets the explanations and alternatives to behave as expected, to make healthy choices, and the skills that they need to learn to survive and thrive in their world.

I knew my hamster was striking out in fear and self defense due to her constant anxiety over the things she had experienced.

I wonder how many parents or spouses, family and friends fail to see the truth in anxious, angry, defensive behavior in those they know and love?

Adult children of Autistic Parents

Did you know ?

When I discovered my own autism, I discovered my mother, too, was autistic.

My mother passed away without knowing of her autism. But when I learned of my own,
I quickly recognized autistic traits in my mother’s inexplicable and incomprehensible view of the world.

I recognized her struggles, her personality quirks, her odd behaviors, her anxiety to please others and to impress them. I began to understand a lot of the “why” questions from my youth.

Diagnosis of my autism, for me was the key to living a healthy and fulfilled life. Lack of information about my autism and my mother’s kept me in a world of “should” and “ought”, a world where my failure to function as expected was the main feature and always behind it my self questioning doubts and self punishment, self hate, why could I not succeed where others had? Why was I such a miserable failure at life where most other people seem to do so much better?

Our mother had very rigid ideas of the rules of life. Everything in her life centered around becoming a socialite. Her home, her family, her clothing, the things she did all were directed toward her idea of what “upper class” people should be. She wanted desperately to be rich and famous, glamorous, idolized and admired. She lived a life of frustration and no doubt also saw herself as a failure if she ever gave herself over to introspection, but she never once admitted to having a personal flaw, that I can recall. ( and remember my perception was definitely skewed by my own fears anxieties and autistic lack of insights) Why couldn’t she achieve a social life? She never knew.

Everything in our mother’s life was moderated by “what will the neighbors think?”
You must understand, my perceptions are autistic perceptions and I had very little understanding of any of the others of my family, their motivations, their feelings, their struggles. I was busy being overwhelmed with my own, attempting to avoid physical and emotional punishments and constant criticism and scoldings, I was overwhelmed with every day survival, trying to please and most of all appease others in our family (as well as anybody I had contact outside the family) and had only my autistic mother’s perceptions to guide me and explain my world to to me. I stopped asking for her help and insights around 3rd grade (8 years old?) when I realized the futility of that, and recognized the fact that she was not interested in hearing about any of my problems or struggles. ( She had plenty of her own and her autism kept her from seeing mine) I understand that now.
I displeased my mother so often because she saw her own autism in me and wanted to correct it, punish it, wipe it out. My autistic failures reminded her too much of her own weaknesses, flaws and struggles and infuriated her because I seemingly willfully continued to annoy her by my struggles, with her seeing these as deliberate disobedience and lack of compliance through resistance of will rather than lack of understanding what she wanted of me at any time.
Her hidden and not really understood message to me was “don’t be autistic”… yeah, that was it.

No wonder I had a miserable childhood! At least I can make sense of it now.

I got my ideas of life’s ” should’s” and almost everything else in life really wrong! Nobody’s fault!!! Nobody knew about autism, either mine or my mother’s, nor that of anybody else in or out of the family in those days.

I was told by my mother’s sister and their own mother (my grandmother) that my mom was “simple”.

In truth, she was extremely dyslexic and probably had other struggles with sensory processing. She could barely read and write, had echolalia, used music she learned as a child to express her feelings ( singing some songs over and over and over for all of her life in certain situations).

I think of my own inability to visualize (aphantasia) and my fascination for taking photographs of things I see, and want to remember. I have thousands of images stored in my computer so that I can go back and look at the images which I can’t visualize or remember in a visual way by picturing it in my mind’s eye.

I was shocked ( oh no, I have become my mother!!), when I realized in remembering that our mother was obsessed with taking photographs and that she had amassed a huge collection of printed images, almost all of her family, taken over the course of the years.
Our mother’s photo obsession drove all of her kids and her spouse crazy. Every activity should have a photo, every event needed to stop while she posed us and took repeated photos. She was always excited to look at the photos when they returned from being developed.
I suspect her obsession with photo taking was because she could not visualize in her mind, either. In those days photo taking was very expensive, both to purchase the films and to have the photos developed. I remember my father complaining about the expense!
On top of our mother’s likely aphantasia, add that she was not able to read much at all because of her dyslexia. She struggled to write due to the dyslexia as well.
Her struggles were far worse than mine… I could read and write and had a gift for words, and I am amazed that she accomplished all that she did without these things.
Mother’s hearing processing and her visual processing may have been struggles for her as well, but I will never know. I know she loved movies and television, loved listening to soap operas on the radio, and enjoyed popular music from her childhood onward.

Now that I understand my mother’s autism and have a much better idea of how it must have affected her, I can only admire that she managed to raise 4 children, kept us clothed, washed and fed, kept the house clean and that we all survived and became independent citizens functioning in society.

I grew up in the 50’s and the 60’s and in those days, all failings of children were blamed on poor parenting.

I blamed my mother too, and for some things like her deliberate cruelty, I still do blame and resent her treatment of me. Deliberately causing pain is never appropriate, physically or emotionally.

I can not excuse that part of her behavior. But I can better comprehend it. She had so very few tools available for overcoming her own struggles. She had no insights, as I have been blessed to obtain through today’s knowledge of autism and of my own diagnosis. She had to struggle all her life and never knew about her own autism. She never had the opportunity to gain insights and self understanding, to see her world differently, to make adaptations that might have allowed her to grow and thrive. She never knew.
Today, knowing my own autism and knowing that she died never having the blessing of self understanding needed to adjust her life and her struggles, I am better able to forgive so many of the struggles of my own life which I had been taught to blame squarely on the parenting I had been given. And I can finally forgive her as well.
We survived, how we did it, I am not sure.

Knowing about the autism in our family has been a key to my understanding of my childhood, my youth, my struggles all my life.
Knowing about autism in my mother and possibly in other family members has allowed me to understand all those painful “why’ questions and helped in the healing.

Did you know????

Now I know of my own autism, I wonder how I did as a parent?
Nobody knew about my own autism all the time my kids were growing up.
I did not learn about my own autism until my offspring were born, and grew up to have homes of their own.
Nobody knew back then.
Diagnosis is life changing.

Shoulds

ought, supposed to, and other unhelpful or damaging words and phrases

This is about undefined expectations and non specific social pressure, guilt, shaming, and other undefined vague or incomprehensible negative communication.

Should sit up by age 6 months
Should walk by age 18 months
Should talk by age 24 months

Expectations for performance in our lives are set at a very early age. Before we go to day care we should be potty trained, before we go to school we should be able to dress ourselves, tie our own shoes, wash our hands and brush our teeth.

In school we should be able to sit still, listen to and obey the teacher, should be performing according to the parameters set in the guidelines for our average grade levels.

And so it goes. By the time we reach adulthood we have heard that word “should” at least a thousand different ways in a thousand different contexts allied with performance and expectations.

Somewhere in that, ” should “also is used to shame.
You should know that.
You should have….( done something)!
You should not ( have done something else)!.

“Should” becomes condemnation and guilt causing.
Added are variations of should: “ought to”, and “supposed to”.
You ought to know what you did wrong!
You ought to be able to figure it out!
You are supposed to (be like this, react like this, think like this).

I spent years in emotional chaos and despair over these words and this particular form of communication from others.
How was I supposed to know the things they said I “should”?
They never explained or defined their complaints or their criticisms so that I could avoid doing whatever it was they did not like me to do from then on.
I got responses such as “that was so mean” or “you hurt my feelings on purpose” or “You know very well what you did!”.
I could not understand how I was bad, wrong, thoughtless, improper, incorrect, etc without specific explanations of how I had offended or made mistakes that were so frequently interpreted as deliberate actions meant to cause emotional pain, to show defiance, or to deliberately thwart or frustrate others.

I was told constantly “you should know by now”, ” I should not have to tell you to” , “You ought to be able to figure it out”, and “you should not need help with that” .

I did not know, you did have to tell me, I was not able to figure it out on my own.
I was lost, confused, frightened and felt terrible because it was obviously “all my fault” but I did not understand how that could be so. I had absolutely no idea of how this had happened. I had absolutely no idea of what I could do to make sure it never happened again, but oh how I wanted to fix that!!!!

Add to this “you’re not supposed to be like that” ” You’re supposed to say (this)” or “You are supposed to ( do this)”.
I was often told I was supposed to want certain things, supposed to feel certain ways, supposed to like certain things, or to react in certain ways. I tried so hard to comply.

The world was just full of rules I tried so desperately to understand.
I did not know until years and years later that the words “should, ought, and supposed to” were subjective and dependent on the expectations of the person speaking rather than rules written in some unknown and hidden social code book to which I was for some reason not allowed access.

I did not know that the same “should”, “ought” , “supposed to” did not apply to everybody equally in any interaction. Nobody told me. I did not have a clue!

I wish somebody would have explained.

If you are the parent of a child with autism, it might be helpful to omit those few words and provide complete and detailed explanations of expectations and how they are to be met.
Adults with any kind of interactions or relationships to adult autistic persons, for these folks, I suggest the same.

Disappointing behavior, words spoken, actions taken, and expectations not met can be helped most by explicit and detailed explanations about why a certain action is preferred.
Please provide detailed description and explanation about how the expectations can be met in the future.

Your autistic partner in communications, child or adult will be much more likely to understand your expectations than by your telling them “you should know”.

Self inventory of skills

A useful tool

I fell on the idea of a skills self inventory when I was in my middle 30’s. I had never given much thought to
my mindset, my skills, my abilities, the things I had learned in previous years and previous jobs, etc.

I decided I needed to go get a job when my children were in school for most of the day, and found a book called ” What color is your parachute”.
There have been many versions of this book over the years. In the front of the book it helps you find your strengths and weaknesses and gives you an idea of the kinds of jobs you are suited for. The back section is dedicated to the ins and outs of actually job hunting. ( I am only concerned with the front section today)
I did the exercises in the book faithfully and found that I had much better understanding of myself after completing the exercises. I had never really thought much about my abilities or skills, and this helped me see many facets of myself that I had never suspected. ( remember this was 30 years before I knew about my autism).
The “homework” that made the most difference to me in terms of self confidence, self understanding, and general self knowledge (something I think many autistic people struggle with) was a skills self inventory.

The project was meant to help you see what you can do. It asks the participant to list everything we know how to do. This includes basic skills as well as those we have been highly trained for or that we are most adept at. I started my list chronologically, from the earliest memories of learning how to do something on through my most recent experiences. I listed the ability to walk and talk and do toilet things, to self dress, to do self care such as washing myself, combing my hair, etc…. I got super specific… if you do this you might be very specific too. I listed everything I could remember that I learned in school, how to read and write, how to play certain games, how to do arts and crafts… how to play a musical instrument, how to cook, how to clean…. on and on and on. I listed everything I could remember learning. How to use specific tools, how to type and file, how to give myself a home permanent and cut my own and other’s hair. How to carve leather, how to change a fuse… everything I had learned I tried to think of and write down. It took days! I had pages and pages when I finished.

It took just a short while to recognize that I could learn, that I had learned a great deal over the years… and the self inventory gave me insights about what I was best at, what I liked to do the most, etc etc.

I tried to share this revelation with others, but most of them already knew… yeah yeah, skills inventory and aptitude tests for school… so blase… did they do aptitude tests when I was in school? I think maybe they did. I remember getting results telling me I should be a forest ranger or a jeweler/watchmaker. I remember them telling me I should go to college. ??????? How did they come up with those suggestions?

Evidently I had missed a lot that others picked up on . Story of an autistic life, right???

That self inventory gave me better self understanding than my communication skills therapy had at age 30..( although those skills saved my life and were essential to life as I now know it).

I was much more confident of being able to learn new skills and being able to cope with new situations after doing a very complete and detailed inventory of the things I had already learned.

We hear so much about ‘disability’ and so much seems to be focused on “what we can’t do”.
Do a self inventory in these days when many of us seem to have extra time to fill while waiting for the current world health situation to evolve…. if you have never done a detailed self inventory, listing everything you know and know how to do… I suggest that you might view yourself differently after compiling such a list.

Flat Affect

I missed this one, I think!

I have been trying to learn if there is a link between Parkinsonism’s “mask” and Autism’s frequent reports of flat affect.

Flat affect is simply a lack of expressivity in one’s face and reactions.. the lack of showing emotion in one’s “presentation” to the world. Flat affect is reported as being frequent among autistic people.

I was quite surprised when the Doctor who diagnosed my autism said in the summary report that I “presented with flat affect”. I had always thought I was quite expressive both in my face and body, and in my voice! I certainly feel emotions, and was amazed that these emotions are not clearly visible on my face and in my reactions, etc in interactions with others, etc.

My mother was diagnosed with Parkinson’s while she was in her mid 50’s partly because she appeared to show “the mask” or flat affect that is known to develop with Parkinson’s disease… and knowing of her autism, I am now wondering if the flat affect due to her autism was perhaps attributed instead to Parkinson’s.

Flat affect might be one reason that autistic people are often accused of being cold.. our emotions may not be evident to others because of flat effect… NT people generally are very facially expressive of emotions and looking at one’s face is often a giveaway to one’s thoughts ( one being a person or an individual). When other people can not see our emotions clearly displayed on our faces, it is assumed that we are unfeeling. This is often far from the truth!

If you have been accused of ‘Not caring, being cold, being heartless, unreceptive, detached,” or otherwise unfeeling, yet you know you feel emotions sometimes desperately, perhaps flat affect is present. Did you know? I did not!