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?

Autism Trauma, PTSD,Anxiety

Trauma, anxiety, and PTSD are not diagnostic of autism, nor are they believed to be caused by autism.

But it still appears there is a connection for many autistic people. There seems to be a higher incidence of anxiety diagnosed among the autistic population than in the general population ( 16 percent as opposed to 5 percent) in one study i examined .

I have spent a good bit of time reading about autism and the fact that so many autistic people report having anxiety, having experienced traumatic incidents, been traumatized repeatedly through abuse, bullying, certain therapies, and in some cases repeatedly distressed due to autistic processing struggles. (sensitivity to sound, touch, etc)

The part about the trauma or distress being due to processing struggles is what I want to address here.

A few years ago until the present, there were studies and diagnostic explanations released which said in essence ” PTSD can have the same symptoms as autism, so don’t diagnose autism until you are sure it is not PTSD”. I read several articles all seeming to say that too many children were being diagnosed with autism instead of PTSD.
But today something interesting seems to be happening.

Instead of saying children with PTSD seem to have the same symptoms/behaviors as autistic children, they are seeing that autistic children seem to be more prone to PTSD. That PTSD and autism can and do occur together in the same individual.
Things that can be experienced by neurotypical children and not be traumatizing can be devastating to a child with autism.
The difference is in the way the experience is processed. Examples were given of one child who had PTSD due to the sudden ringing of a loud automated bell that marked class periods in early grade school. Kids who are neurotypical would not be traumatized by the experience, but due to sensory processing difficulties, the autistic child was traumatized.

This only makes sense to me.
I can understand how this happens by looking to my own autistic early life upbringing.

Using my memory of my earliest childhood experiences I can see how my own inability to regulate sensory input or make sense of my experiences worked to give me tremendous anxiety.

I have said that before I knew about my autism I lived my life in fear. Fear has been the predominant emotion of my life. It overwhelms everything else persistently and continually.
Knowing and understanding about my autism has provided much understanding and is slowly causing the anxiety to ease as I understand more and more from my past experiences in light of the autism and how it affects me every day.

At the time I grew up it was perfectly OK to swat, spank, hit your child to train them in behaviors and make sure the parent was respected and obeyed.
My mother was autistic and a first time mother. ( we did not know or understand she was autistic until well after she died)
She kept me fed and bathed, took me for walks in a pram and later in a stroller, and most of my time was spent in a “play table” that locked me in a sitting position with a surrounding table from which I was fed, entertained, and kept safe from the dirty floor and the dangerous things around the house. My mother and father held my hands and ‘walked’ me around from time to time, and my mother says I was standing in this way by 9 months old. I began to resist the table/staying in the chair routine and actively fought her when she tried to place me into it. A few whacks on the seat at first got compliance but soon it didn’t matter to me, I did not want to sit there any longer!!!!!
When she finally let me out of the safety of that chair, she began swatting/hitting/spanking me on the hands or the backside if I touched anything or did any other thing she did not want me to.

Hitting as punishment stopped when i was 8 and my sister( much larger, stronger and not as intimidated as I ) was 6 and she turned on my mother and attacked her while being ‘punished’.

At this point, age 9 months, I believe I understood spoken words quite well, although my own speech was at the ” point and say” stage.
I don’t believe I understood why I was hit for most of my life until I was about 5 or 6 years of age. I simply did not process the action i was caught in with the punishment, frightening, sudden, and painful, that I received.
Even by age 5 just telling me to “stop it” did not tell me what was making my mother angry.. autism. My sister probably understood.
To my autistic understanding at 9 months old, punishment sudden, surprising, painful and fear causing, was surrounding me always, waiting to happen in unpredictable times and for unknown reasons. It suddenly came on me with no warning and no comprehension of why or that this punishment was in any way connected with whatever I was caught up in at the time.

Please don’t worry about that confused little girl, ( she is fine today!) the point is not to get sympathy or to complain, but to explain how it happened that I had anxiety for most of my life.
I was always worried that I would be punished for things I felt woefully inadequate to deal with. I simply had no understanding of how or why these awful sudden , yes traumatic things happened. I learned to be quiet and wary and to wait for instruction or indications of what I should or could do. Those situations seemed safer. At the same time I was punished if I ever showed frustration, anger or resistance to any parent or sibling. I learned to block my anger. I learned not to protest or to cry.
If I was given a toy to play with and told to go to a certain place to play, I played with that toy in that place. To venture any other thing was to invite danger. By the time I was 4 years old and I was reading complete sentences at a much higher level than for a normal 4 year old. I spent hours drawing and reading quietly. At age 5 I was having nightmares about my father blowing up the house, or my mother chasing me with a butcher knife wanting to kill me because I set the table wrong. My parents were to be feared and obeyed. They were never comforts or safe havens or somebody I could turn to for help or understanding. I did as I was told and was to otherwise not show I was there or ask for anything. I simply did not understand things in any meaningful context and there was nobody to know this or to explain to me all the things I did not understand.

By the time I went to school at age 4, I believe I was programmed to be anxious and fearful.
My early life experiences taught me to be hypervigilant, appeasement oriented, and to expect to endure pain, fear, and other emotions in a stoic manner. I had no other options available, no ability to reason or to see when or how I could be safe or how to manage or negotiate or communicate wants or needs.
Autism in me (and I believe others) needs explanations in as much detail as possible for everything that happens, for everything that is done, going to be done, or done in the past. I simply can not understand most things without either previous experience and understanding to build on, or explanations.
My autism ‘understanding’ as a small child led me to make many conclusions which were probably false and led to my anxiety. Add to this the bullying, emotional and physical abuse and not understanding why all of these things happened, I was lost and had to design my own ‘survival kit” of defensiveness, anxious watchfullnes-hypervigilance, avoidance, and self isolation. This pattern continued for most of my life, feeling inadequate to whatever might be ahead, not knowing how to cope, not having understanding or tools to deal adequately with almost every circumstance in my life. No wonder I have been anxious!!!!!

I need to know what is going to happen, when and how. I need to know why somebody is angry with me and what I did that caused them to become angry. I still need all of that explained.

Failure to gain those explanations meant I was at my own resources to understand my world. I got a lot of things wrong but I survived.

Now with my autism diagnosis at age 68 I am going back over all of the ways autism has affected me since even before I had words, well that is taking a long time. But now I have explanations and understanding of my autism to help me sort it all out and see how autism has worked in everything .

It makes all the difference to know and understand why after all this time.

Think of what happens when children are physically and sexually abused, when they are subjected continually to therapies that are traumatic and/or incomprehensible emotionally or mentally.
I can certainly understand how autism has played its part in my anxious and self protective, helpless view of the world. I can understand how experiences other autistic children and adults experience can be much more traumatic than they would if those same experiences were had by neurotypical individuals.
I think I am on the right track when I say I believe that PTSD and anxiety and autism can be co- existing conditions, and I think I understand why. What do you think?

Asking for a referral, social anxiety, why I prefer my own company.

I am planning to make another attempt at “official diagnosis”

Due to problems with communication and my GP’s short, abrupt, impatient treatment of my questions, and incidents of her scornfully yelling at me in the past, I had avoided the idea of asking for a referral, or trying to explain to her why I believe I am autistic.
I had searched both my insurance network and the network of health care providers she works for, and none of them had any specialists in autism, not even for children.

I considered asking for a referral from the GP an unnecessary, dead end approach to diagnosis. I did not bother asking her, because I knew from my research on Doctors available in her extensive statewide medical system that none were providers with any interest in autism.

Now I have found a Hospital in another state, 9 hours drive away, which has a department devoted exclusively to diagnosis and care of autistic adults. The doctor in charge of the clinic is an author whose books I have read. It seems she does indeed understand autism in adults. In order to see her, or to be considered for diagnostic testing and interviews, I must have a referral from another doctor.

I dread going for my yearly scolding/wellness check so am already beginning to fret.

A thousand “what if” questions run through my head. I feel as if I have to be prepared for any eventuality and of course I am not able to do that. Feeling incompetent to deal with a given situation is a BIG trigger for anxiety in me.

Most social situations (dealing with any other humans and trying to interact with them on any level is something I consider a social situation) cause great anxiety because I fear I am not competent to deal with whatever may happen. Let me re-phrase that, I know I am not competent to deal with most situations that may arise. Life long experience has taught me that. I am much better at age 67 than I was in my first 30 years, but by comparison with most NT persons, I still find I fail quite frequently.

Most anxiety for me is because I feel that I will not be able to deal with whatever situation I am facing in a competent manner, without making a fool of myself or annoying or angering somebody.
So many life experiences in the past have proved these fears are founded in truth.
As an older adult I no longer fear physical harm from most situations, but I dread anger, argument, aggression, criticism, scorn and rejection. I am simply afraid to subject myself to situations where these dynamics come into play, leaving me emotionally hurt and helpless to defend myself.
With life experiences of this sort of thing happening in interactions with others, is it any wonder I am anxious?

It is not that I don’t want to interact with other people, it is more that I seem unable to do so without causing anger, scorn, or other negative treatment from others.
I prefer not to ‘socialize’ – that is interact with others regardless of whether it is in an informal or a service or professional setting, because the negative experience has been the most common in my life, and why indeed would I seek that out?

BUT: Is that not what the goal of seeking diagnosis is all about?
I wish to interact with persons to tell them about autism in elderly people. One by one I am facing my fears, the message is important.
I hope to help others understand how autism has affected their own lives, and mean time I continue to try to find a way to overcome the way it affects me as well.