The Nature of Autism

How Science has given new information to help us

Our understanding of Autism is changing.
At the time of its addition to The DSM, autism was thought to be a behavioral disorder, probably caused by poor parenting and bad things that happened to individuals especially in early infancy around the time autistic behavior or signs began to be observed in a child.

Autism was in the past believed to be something that could be cured by treatments including coercion, which is modified somewhat today but still in use in many places, training children to behave or respond only in certain socially accepted ways to any circumstances or surroundings, stimulus or lack thereof.

Autism conversion treatment was through training using among other things corporal punishment including electric shocks. ( how could this have been worse than the so called poor parenting and trauma thought to have caused autism during this time?) (rhetorical question, think about it, though)

Autism was thought to have been caused by simple willfulness, ( autistic kids being wicked, evil, bad children) wrong thinking,
autistic children having been being “spoiled” by having been raised by inept adults in charge of them, or by having been given no love or caring at all. ( no win for parents who likely in most cases actually cared a great deal more than others about their own children )

Ideas about autism have since undergone beliefs about poor diet, deficiencies, allergies, immunizations, bacteria, lack of bacteria, brain inflammation due to many things including various childhood diseases, vaccination status, food, water or other contamination, pollution, ozone or atmospheric or genetic engineering of food, processed foods with “chemicals” in them and so much more. These ideas are being proved wrong, one by one. Science today has a better than ever understanding of the true nature of autism.

Truly scientific research today has found and confirmed these causes today:

Autism is known to science to be mostly genetic in cause, always present at birth, (not acquired or developed after birth) and autism is defined today as being caused by uneven neurological development.

Let me say that again. Autism is a result of unusual or different neurology that has happened through uneven development of various parts of the nervous system. The “programming” for neurological growth after being born is present before the autistic baby ever leaves the womb.

The nervous system? https://www.news-medical.net/health/What-is-the-Nervous-System.aspx

Yes.

Autism is the sign of uneven development of the nervous system.

What this means: Different parts of the nervous system can be developed or underdeveloped, deformed, missing, non functioning or poorly functioning or extremely highly functioning in different ways in every autistic individual.

Now we can understand how “symptoms” of autism can vary so widely in every autistic individual. Every one of us will have different struggles because every single autistic person will have ” unique to them only ” neurology from birth.

Science has defined markers of normal or typical development of neurology from newborns throughout childhood.
Typically developing infants and children grow in expected and predictable patterns.
A look at any book on child development will describe a newborn’s progress from birth, with a typical average child marking developmental milestones such as sitting up unaided, crawling, walking, talking and so much more at certain ages/stages and in certain expected order. Most “normal” or “typical” children crawl before they walk, for example.

Autistic children may not follow this pattern, in fact, this is one sign that diagnosing professionals use today to diagnose autism.

If a child does not sit up, crawl, walk, talk, or perform other expected developmental milestones “on time” and in the expected neurotypical (NT) order, these are signs of possible autism diagnosis.

Now we know autism is based on irregularly developed neurology with any area of neurological development and function likely to be affected, (most of one’s neurology or only part of one’s being affected) , we can find new ways of making life better for any given individual.

Gradually, autism behaviors are being understood to be due to poor neurological processing of any or all of the sensory systems.
This includes things we see, hear, feel, taste, smell, and our senses of place, time, physical or emotional self, our ability to sense things like light, temperature, taste, our ability to understand our bodily signatures that tell us when we are moving, how hard or how much pressure to use when we touch ourselves or others.
Sensory abilities to understand our emotions, or to do simple things like use eating utensils or open and close a door, climb steps, catch a ball, or use words to speak are directly affected by our neurology.

Things that come naturally to neurotypically developed/developing individuals can be huge sensory struggles in so many ways for those of us with autistic neurology.
When we consider how complex the neurology of any given human is, we can understand how so many varied “symptoms” of autism can be observed.

“Treatment” for autism is gradually changing from “training” the autistic individual how to do things in the way that neurotypical individuals do (this will always fail to a large degree because we are not equipped with typical neurology to begin with) (remember the old saying about fish and bicycles?)

Today focus for helping those with autism to succeed in a neurotypical oriented world is based on understanding of each individuals’ struggle. We seek to understand each autistic individual’s strengths and weaknesses and to help find ways to make performance of every day tasks easier, to make communication better between autistic individuals and the rest of the world, to give autistic individuals better individual tools they may need to succeed and thrive in a world which for the most part is not friendly to performance of daily living functions in other than “normal” or “typical” and socially expected ways.

Communication is emphasized much more today. Finally those offering “treatment” are discovering that if the autistic individual can communicate their needs and their understanding of their lives, the approach we need to help them succeed will become evident sooner and to better effect. It should have seemed obvious so long ago!

“Autisim treatment” simply can not be effective by “one size fits all” rote “training” therapies which attempts to “normalize” our behavior to “make us acceptable” in today’s society.
Such training simply is not helpful because the underlying very different strengths and weaknesses of each individual is so varied and so different from any other autistic person’s. “faking normal” by standardized training methods will never be successful. Ask autistic individuals who have been through these courses of “therapy”.

Behavior is not being “trained out of us” today as frequently. Instead autistic behavior is being examined to understand the neurological processing struggles that drive the behavior.
This is the key to a better life for all autistic individuals. All autistic behavior has some neurological basis driving it. Behavior can be learned as adaptive (and maladaptive) as we experience life, but today we understand Autism is neurological, not psychological in nature.

Today tools are being developed and lifestyles are being changed to make every day problems around certain neurological challenges easier to handle, easier to work around, easier to do in different ways.
Actual communication and understanding is imperative in these therapies/ treatments/ ways we are addressing autism and autistic struggles and strengths.

How long before this understanding is the standard for ongoing diagnosis and therapeutic or supportive aid to be the norm in the medical and social world surrounding autism today?

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”.

“what is wrong with you?”

What is wrong with me? What is wrong with her?

Something is just awkward and off about that person. They don’t understand your directions, they don’t understand your complaints, they don’t do a thing to correct their behavior, which is obviously inappropriate, wrong, bad, socially unacceptable, harmful, etc.

This is about autistic perception and processing, and how it can be different from NT (NeuroTypical) thinking.

Not everybody who is autistic struggles with this particular problem, but many of my autistic cohorts think in a very direct way which does not include guessing at less than specific directions, comments, thoughts, etc. Many of us are incapable of guessing from hints.

As a child it was a very painful struggle, and is still at the base of many of my worst memories of social mistakes and misunderstandings.

Direct communication as specific as possible, with plenty of details is the best way to reach my understanding.

Vague, generalized, hinting, innuendo or hidden, veiled suggestions or threats will not be noted or responded to. I just don’t understand them for what they are. I in essence can’t see or hear them as they are meant.

Today I ask for specifics, as a child I was thought of as being challenging, difficult, deliberately being naughty, uncooperative, etc etc etc.

My life growing up was full of questions about why I did not co-operate with the school group, the family unit, with others I was in contact with in almost any and every situation.

I wanted to perform as they desired, but did not understand what was expected of me.
I was often challenged with questions about “what were you thinking” when I did something I got punished, humiliated, mocked or degraded for.
This was an every day thing, sometimes happening multiple times a day. It could have been avoided, in many instances could have been helped and ended successfully.

“Why don’t you straighten up and fly right?”
“Pull yourself together and get on with it!”
“What’s the matter with you?, you better get busy!”

“You always” ( fill in the blanks, screw things up, ruin the fun, feel sorry for yourself, think only of yourself, are so thoughtless, are so selfish, etc)

Same for the “you never” lots of things to criticize and scold me about there, too.

I felt as if I was constantly wrong and bad, and in one sense perhaps I was.

But you will note that all of these comments are non specific… they do not explain exactly what I am doing at the time that engenders anger, frustration, impatience, disgust, hurt feelings, or other emotions.
I was never able to extrapolate from these exasperated comments what behavior was wanted from me, in what ways, and how to perform the expected behaviors.
All I knew was that I was once again being punished as a failure.

Today I can tell you that I needed specific instruction and perhaps explanations. I didn’t need to hear a lot about somebody else’s emotions, I just needed to know how not to anger you.

Tell me: “Stop kicking your brothers chair leg.” instead of “stop that”.

Tell me: “Take the laundry upstairs and put it away”, instead of just handing me a basket of clean clothing.

Tell me to set the table, instead of saying “dinner is almost ready”.

Tell me to empty the waste baskets in every specific place, and to then take the garbage bag to the can or out to the curb, instead of just saying “put out the trash”.

Tell me get ready to go to the store by saying “we are going to the store soon, so change to clean clothes, wash you hands and face and put on your shoes.”

General statements of intent such as “we are leaving in 5 minutes” does not tell me what I need to do to be ready to leave.

To Neurotypical people it seems things ‘should’ be automatically understood from short, non specific comments as above, but I can guarantee you those comments were not understood at the time and remain a puzzle in my mind and painful to my soul as reminders of how stupid I felt and how angry everybody was with me, when I did not understand a thing. If there is an autistic person in your life perhaps you and they may find life easier if specifics are given when requesting co-operation instead of using generalities.