Autism and Sensory Trauma

Sensory trauma explained

I don’t often post links to other pages, but I do go back to “learn from autistics” repeatedly, and I do recommend it to others who are seeking information about the experience of autism. Useful for insights about how we as autistics experience our world.

Each one of us is different, our challenges and our experiences are all different, so sometimes I do not identify with some of the people in the interview section of the pages.

This particular series, however, was so well explained and so completely descriptive of some of my own trauma due to sensory issues, that I am including it here, in hope that somebody else may benefit.

Spouses, parents, siblings, co workers, caretakers, friends, and others who are not autistic may find this website useful for understanding the “autistic experience”. Who better to explain what our world is like, than those who have lived experience???

In recalling some of my most traumatic sensory experience “the stairs” loom as one of my most consistent challenges.

Through second grade, the school I attended was all on one level, no stairs. Beginning third grade that changed, as our family had moved to a new city. The grade school there was on 3 levels with a huge granite staircase as the dominant architectural feature.

The stair steps were low and wide and the stair well had railings only on each side and an open inside wall from railing height and above. The echo was incredible, the height and depth of the staircase was terrifying in dimension.

The other children ran up and down the steps, pushing, shoving, some dodging in and out of the main stream. I clung to a railing trembling and carefully placing each foot, and in desperate fear of falling.

This happened going up and down multiple times a day, for recess, lunch, “gym class” etc. Those stairs were the bane of my existence and I always got in trouble for being the last in my seat, last in line, etc. I had developed the seemingly reasonable technique of waiting until the other children had gone ahead before I attempted my terrifying ascents and descents.

In every school thereafter, there was the challenge of “the stairs”. Up levels and down several times a day.

Most class changes had us hustling to try to get to our next classroom before the “bell”. I was almost always late.

In addition to this, in middle school I also contended with aggression of others, one boy in particular finding it funny to run into me in thestairs or the hallway and to knock my huge pile of books out of my arms and send them flying in a storm of paper, pencils, and leaving me bruised.

I made sure nobody was near me on those stairs, not a soul on any staircase before I attempted to navigate them.

No teacher ever scolded him, I learned to wait standing in the hallway against the wall until he went into the classroom. ( he was always one of the last in, because he stalked me, waiting for an opportunity to attack).

I was always in trouble for being late after the bell.

I was constantly asked why I was in the hallway after others had long gone.

It was simply safer to me to get scolded by an adult, than it was to risk my life and risk injury every day on those stairs with the stampeding herds. I truly felt I was in that sort of danger every time I encountered stairs.

Can you imagine living in that sort of constant fear when approaching a seemingly simple every day activity?

There are loads of other memories I have about other sensory experiences, but the trauma of stairs is still with me.

If you are autistic, I bet you can think of some sensory traumas which have been with you all your life, too.

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?