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 Intrusive thoughts

Re-living trauma, replays of old experiences

All my life I have had a “running dialogue” in my head. I hear every thought, and I am always thinking. Since I function best using words, this is understandable to me.

I have also had continual “loops” of old bad experiences shove themselves into my conscious thoughts regularly. I “replay” the upset, the angst, the pain, the fear over and over.
I came to the conclusion after my diagnosis, that this is my brain looking for answers about what happened, and seeking answers about how to avoid repeating what happened.

It is my understanding through discussion with others on the online forum groups that I attend, that this is a common experience.
Re-living trauma, pain, angst, anger, and upset is evidently a side effect of poor processing and misunderstanding. It is as if our minds still try to sort the event out and to come up with a “better ending” or new understanding.
This might be a sort of perpetual attempt to process something that is not comprehensible.
I have ( and had ) a lot of “loops” replaying old pains and fears.

These things happened before I knew about my autism and before I understood my very slow to non-existing processing of “real life” interactions.

There were perpetual misunderstandings, I was forever reacting in ways that angered others due to my own misunderstandings (and eventually to my angry frustration and almost instant defensiveness whenever anyone approached me).

I was ready to be attacked, assumed that I would be attacked and constantly vigilant to escape through the mal-adapted means I had developed as I grew up.

In interacting with other autistic people in forums, asking questions, etc, I have learned that this is a common and distressing side effect of our autism. All those replays pushing for attention, replaying the hurts and the angers and fears over and over. It became a sort of habit to re-live those experiences and to repeatedly come to the conclusion that others were hostile and out to get me.
Traumatic confirmation bias, and a self fulfilling cycle, however unsatisfactory. I was stuck on “hold” continually re-living old pains and traumas.

That was before I knew about being autistic.

Knowing my autism diagnosis gave me new perspective on these old hurts, and these constant reminders of my inability to defend myself, my complete incompetence to deal with people in almost any upset situation, my lack of ability to understand what had happened, and why.

I was not able then to see how my autism (and theirs, too) sometimes got in the way of communication, resulting in misunderstandings, angry flare ups and worse.

After learning of my autism, I began to allow those memories “head space” instead of trying to avoid them. ( something I was never really able to do).

As I faced the memories one by one, I was able to take each apart in little bits and to see how autism had added confusion, anger, misunderstanding, mis-comunication, hurt feelings and so much more to the original “triggering incident”.

Once I was able to figure out “what happened” I have been able to set that particular memory aside.

If I am sure I can not fix it, can not change the outcome, can not do a thing about it all these years later, then I deliberately file that memory into a metaphoric file
(remember I think in words, not pictures) that I created in my mind.

You may find it helpful to actually picture a file with a label on it and the memory as a paper, or other item and actually visualize this part, if that is the way your mind works.

I take my painful memory, which I now have new understanding of, and I file it in that metaphoric file, which I call “finished business”.

If that particular memory presents itself in my mind again, I remind myself that it is “finished business” and immediately send it back to that file.

Over the course of about three years since I have been practicing this method, I am finding more peace and having far fewer intrusive bad memories. I allow the memory “head space” until I have examined it with my new understanding, if I can not change anything now, but I know and understand more about “how or why it happened”, I can safely ask it to go to the “finished business” file and to stay there.

In many online conversations with others on these self help, self support ” by autistics and for autistics” forums, I have explained how I do this, and I have got good feedback from others about its usefulness as a tool to help find peace and self understanding.

Diagnosis is the key to self understanding.

I realized recently that I might not have mentioned this method for dealing with old pains on this blog in the past and thought it might be something useful for others with painful and distressing memories to try.

Hoping you too will find this helpful.

Today is the first day of spring 2021. May you continue to grow and bloom!

New beginnings and new and better life, growth, and renewal are possible through diagnosis.

Who benefits? Follow the Money!

and “nothing about us without us”

I will be attending my first Developmental Disabilities conference at the end of the month. In preparation I have been looking at the state’s setup for supporting autism. Most states now have some mandates requiring insurance coverage for diagnosis and treatment of autism in adults. Requirements for coverage differ from state to state.

The state I live in (MIchigan) has established a “state autism board” to guide and direct autism support activities.
I was not the least surprised to see many persons highly involved with autism, ABA therapists and consultants, Insurance Navigators, and some very active in Parent groups like Autism Speaks. Oh my, can you spot what’s missing???
All of the people profiting from autism treatment and insurance benefits, not a single autistic person among them. !!!
Who gets all the money pumped into the “support” (financial) of autism from government ( national, state, local) ????
Maybe those groups??? hmmmm???
Who decides how that money will be spent? Who decides what treatments and practices are most “beneficial” and to whom ???

( hint: it is probably not anybody who is autistic).

New topic same subject. There are almost no therapists working with adults, and doing adult diagnosis in this state . There are a few who don’t take insurance, cash only. Very few and far between. I wonder why some enterprising medical college, hospital or similar institution of knowledge and learning does not set up an adult autism clinic?
Why are teaching colleges not offering instruction using latest information about autism diagnosis for adults as well as children?
There are hundreds of thousands of autistic baby boomers who remain undiagnosed and who could benefit greatly from therapy for emotional as well as physical struggles and addressing trauma from years of struggles without knowing diagnosis.
Now that most states mandate insurance coverage for autism diagnosis and treatment (in adults too, yes!) I hope to see great things come of the newly available money to be made .

Gerontology and all support structures will be dealing with autistic adults (and autistic adults dealing with them), In very large numbers as boomers all will be over 65 by 2030.

A wise medical school will begin to train specialists in adult autism to meet a need which is going unfilled and is becoming in demand as the older generation learns about adult autism and wonders if they too might be autistic.

Persons thinking ahead will see that beyond the ‘baby boom’ generation there are generations of already diagnosed adults reaching maturity, needing supports, needing help adjusting to adult life, needing therapy and who will eventually also be ageing into a steady stream of autistic adults needing professional care and attention, diagnosis and support of all kinds.

There are only a handful of clinics and diagnosing entities focusing on serving adults in this country. One I know of in Illinois has such demand for services that people make appointments for diagnosis and subsequent treatment up to 2 years in the future… people are standing in line for services.!!!!

Who will see the need and fulfill the potential?

Students considering medical and support careers would do well to consider some branch of autism specialty which actually uses today’s information to diagnose and address autism struggles.

( have you noticed that ABA is not scientifically proven, only results based, and many autistic people both those who have “been treated” and those who were lucky enough to escape due to old age- are beginning to revolt on behalf of children undergoing what is being exposed as damaging and even traumatizing “therapy”?)

Diagnosing neurologists and psychologists specializing in autism are needed desperately.
Hospitals, private practices, psychologists and therapists already in practice could add adult autism specialties to existing services.
I can not understand why the medical communities, usually so quick to see profit in certain branches of medicine, have let this one lapse????
Watching with interest. The next few years should be very informative.
Will autistic people benefit?

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?