Autism in a Box

Mistaken thinking, ideas and concepts about Autism

From the first discovery and attempts to define autism, its origins, and its struggles, there has been a natural human tendency to assign traits to all of those who are autistic.
“autistic people don’t look you in the eye”
“autistic people think in pictures”
“autistic people have no empathy”
“autistic people are ” “
“autistic people do ” ”

There are attempts to define autism by traits of thinking, sensory issues, behaviors, and more. There are many mistaken ideas being perpetuated today, too.

Here is what everybody missed from the beginning. Each of us is completely different. Today autism is understood as being a feature of unevenly developed neurology, where some parts of our neurological systems perform amazingly well all the way to very poorly indeed.

Depending on what part of our neurology is affected, we will show very high performance in neurological testing in some areas, right down to exceptionally weak performance in other areas.
Not one of us is the same, except that our neurological functions have been affected by the way we developed. (autism)
This can not be changed by diet, medications, miracle drugs, behavior training, or any other known mode of treatment. We are born autistic and we die autistic.

There is no “look” to autism. “you don’t look autistic” is a common comment totally based in false ideas about autism.

There is no set pattern of thinking, no set pattern of behaviors, not set level of intellect, no set performance levels of any tests available to us today.
Every single autistic individual has neurology that is unevenly developed, but this can show in as many ways as there are autistic people on earth.

Some mistaken ideas and misinformation I have heard “quoted” lately.
“autistic people are many times more sensitive ( some quote(sic) 8x, 12x etc) than neurotypical individuals”
Where did that one come from?

How does one measure sensitivity levels and how does one weigh how each individual reacts to stimulus.???? Do they mean physically sensitive or emotionally sensitive? Do they mean actually feeling, or are they referring to reactivity to any stimulus?

I blame this false information on the “highly sensitive person” social movement.
This idea that certain people are either slow, stupid, sluggish, or highly sensitive and therefore somehow socially or otherwise desirably “highly sensitive”, which fashion often has tied into highly intelligent.

This theory was around in the 1800s, perhaps even earlier when body types were tied for no actual prove-able reason to certain personalities, and perpetuated by psychologist William Sheldon in the 1940s . (and by others since, as well) (this theory has been thoroughly disproven/debunked by the way)
I need to do more research for past writings to uncover the historical bias evident in these loosely associated ideas.

There are no studies or tests to prove “sensitivity”. Science has not developed this capability. Every trait described by the “highly sensitive person” social movement is frequently found in autistic individuals, yet the most recent perpetuator of this ‘diagnosis’ denies that “highly sensitive persons” may be autistic. Oh, great way to avoid stigma of the autism label and all its misconceptions, by the way.

Any statement that begins with “autistic people” and describes a single trait should be regarded with suspicion and caution.
Almost all the ideas about the way we (autistic individuals) think (heard of “extreme male brain” ?) and behave ( heard about autism and “theory of mind”??) needs to be re examined in light of science’s new understanding of autism.

Not one of us is the same. We can not be put into a box and categorized under one thought process, one neurological response, one mode of speech, behavior, ability, or trait.

More and more, those professionals and others who understand autism in this new neurological light are looking for the ways our neurodevelopment or lack thereof affect our interactions with every day living, from the way we communicate, the way we respond or don’t respond to stimuli of many sorts, to our motor and perceptual differences.

Autism is sensory, neurological, and gives us neurological struggles that most NT individuals will never experience. Our sometimes unusual , strange, or seemingly extreme behaviors may be our attempts to adapt and cope to the experience of living with uneven development of our neurology.

When people make blanket statements about autism, what it is, or what autistic individuals do, think again. Most such statements will be based in false ideas and misinformation.

Adult diagnosis of Autism

Things you might not know

It might surprise you to know there is no standard procedure to determine or identify autism.

There is not a genetic test, a test for chromosomes, blood test,
a certain “look” or appearance ( You don’t “look ” autistic) for autism.

There are no standard characteristic behaviors that all autistic people share.

Science is still learning how best to identify autism. In recent years more information has been discovered that has helped shape our idea of autism.

Autism’s rarity (believed to be 2 to 3 percent of the total population although nobody really Knows, since diagnosis is often missed, especially among minorities and among women).

There is not information about autism in many cultures around the world,
its frequency, nor is there understanding of autism at all in many places on earth.

Many diagnosing doctors in “developed” countries around the world are using information that is decades old, and these “specialists” may not be seeking new information besides what they learned as students.

Information in books is not up to date- by the time any book is published much information is already dated.

Consider then, that those professionals who went to school 30, 20, or even 10 years ago will be using information they learned that long ago from books that were outdated when they were studying them, and attempting to apply it when they try to diagnose autism.

Unless they have made autism a specialty, only 2 or 3 percent of any neurologist, neuropsychologist, or psychologist’s clients will likely be autistic.
With so little understanding and so little practice at sorting information regarding diagnosis, is it any wonder that even when we attempt diagnosis by a professional, so many of us (autistic folk) are given misdiagnoses?

Don’t be dismayed if this happens to you. You can keep seeking diagnosis with somebody who specializes in autism and has experience with adults, minorities, women, elderly, etc. depending upon one’s self description. There will be difficulty today in locating such an individual.

Many adults report living with misdiagnoses and being unsuccessfully medicated or given treatments for disorders they do not have until their autism was discovered. How many others are out there still, being given ineffective treatments, being told they are atypical or intractable examples of their (wrong) disorder?

If all treatment fails and you are still suffering and not finding change or relief for your diagnosed disorder, you may have been given a false diagnosis/label due to the lack of familiarity with autism and the many ways it can present itself.

Today autism is diagnosed by observing behaviors, testing neurology, discussing one’s life history and quirks and struggles. Everything depends on the skill and experience and up to date knowledge of the diagnosing professional.

The only criteria that is used is behavioral.
There is no other criteria at this time that can be used.

Autism is still new to science and until very recently there has been very little understanding of autism as having a neurological basis. Even in the past 5 years autism is described as being neurodevelopmental and based in the differences of our neurological development as compared to “average” or “normal” development in our peers.

Obtaining diagnosis for autism in adults will become easier in time as better tools are found and applied by more competent and better educated professionals. That time can not come soon enough for the over 5 million autistic adults in the USA, most of whom have no idea they are autistic.

Autism Anger

Shhhhhhh don’t talk about that!!!!!

Autism has a few “sore spots” that seem to be avoided as topics for discussion in the forums I participate in. When somebody does open up, there is a flood of responses, seemingly relief in finding that individuals are not alone in their struggles. I am talking about emotional regulation struggles this time.
Autism and anger, autism and emotional breakdowns due to anxiety, fears, frustration, and inability to cope displayed as meltdowns, shutdowns, violence, tantrums, and outbursts.
We all understand this happens frequently to many of us. But we are ashamed or afraid to talk about it.

Autism is all about our neurology. Many of the ways we experience the world are not the same for us as “neurotypical” or average, “normal” or non-autistic people. Struggles with emotional regulation are definitely not limited to autistic people, we see examples everywhere of people behaving with one or another form of problems with emotional regulation.

Emotions and responses to those emotions are things we generally learn about when we are very small (people in general).
We are taught to recognize our emotions and how to deal with them in socially acceptable ways, usually before we leave home for school days.
Learning to recognize emotions can be helped by explanations given through instruction person to person, videos, books, and role playing, role modeling and other ways.
Learning to recognize emotions and learning ways to express those emotions in healthy and socially acceptable ways takes practice. The good news is that for the most part, these are skills that can benefit from a coach or teacher, a therapist or a counselor.

Sorting and learning to recognize one’s emotions and how to deal with them in healthy ways is part of the sensory system ( remember I said emotions had a neurological basis?) called interoception.

Interoception used to be considered part of the proprioceptive group of neurology but more recently has been removed to its own special category.

Interoception has to do with what you feel physically inside you. It is the sense which tells you what you are feeling when your body gives you physical clues to your needs and wants. That empty feeling in your middle is telling you that you need to eat. The pressure you feel in your lower regions means you need to use the bathroom. The tenseness of your muscles in your stomach and legs can mean that you are afraid and ready to run. The tenseness of your muscles in your neck, your clenched jaw, your tight fists may mean you are getting ready to fight.

Autism often interferes with our ability to recognize the first physical signs of our emotions… so we end up surprised at our own emotional outbursts and our extreme reactions to emotions we did not recognize we were feeling until they reached crisis proportions. The body experiences emotions in a physical way and we can learn to recognize the signs.

Many of us have not been aware of or have not learned to notice the physical signs of emotion. Elevated heartbeat? Heavy breathing? Weak pulse, feeling faint, tight muscles in any part or parts of the body? Feeling sick to one’s stomach, clenched fists, gritting teeth or tight muscles in lips, jaws? Smiling, grimacing, frowning, head lowered or thrown back? What we are feeling physically and doing with our bodies is a huge clue to how we are feeling emotionally. Many autistic people might not recognize body language in others, and many might not recognize our own body’s signs as well. We can learn!

In the forum discussions I have participated in and observed, many autistic adults have remembered that as children they decided emotions were not useful and made deliberate choices to disregard them or to hide them. This seems generally to have been “early on” in the nursery or as a very small child. We can learn to recognize and make use of our emotions, but it does not come naturally to may of us. It is one more thing we might need help with to sort it out. Especially this might be true in older people who are set in their ways and less likely to realize or recognize alternatives.

It is never too late to learn about interoception and how to recognize our building needs and emotions before we reach the bursting point.

Occupational therapists might be able to help, and there are many anger management classes, biofeedback specialists and therapists who specialize in behavioral difficulties. There is much printed and online regarding how to recognize emotions early inside us and how to use that “early warning system” when we recognize it in order to work with our emotions in healthy ways instead of finding ourselves in a huge and surprising/ distressing/ destructive/embarrassing/ blow up situation.

If you struggle with overwhelming emotions of any sort, I want to encourage you that this can be changed, and new ways can be learned to recognize our emotions, to direct and control them into healthier behavior in distressing situations. We can learn to recognize and use our interoception skills as an ‘early warning system’ to detect and divert our physical reactions to emotional situations and make better choices in how to express ourselves or to deal with those emotions before we are overwhelmed and helpless in still another emotional blowout.

If this is an area of distress for you, please be encouraged, it is something that can be helped.
We can learn new ways, sometimes we need to reach out to others who can help us sort it all out.
Don’t be embarrassed or ashamed to take action. Those folks are there because they want to help and they want us to live better lives. There is no shame in asking to learn new skills. And the benefits are beyond measure in terms of the quality of your life and your relationships to others as you move forward.