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Scientific Studies and Understanding Autism

Ken

Well-Known Member
V.I.P Member
I often find communications and expression to be very frustrating. I have finally come to realize that my perception of most everything is not the same as for most people.

It also appears to me that medical science studies in neurology and psychology only document symptoms, traits, etc. of autism, they are totally clueless on the actual internal experience and perceptions of an autistic person.

Everyone, including psychologist and psychiatrists, believes that they can understand anything they see and they can see anything that is there before them. I guess this is a human trait. However, I believe that nothing can be perceived unless it fits the framework of their neurology / mentality. Anything outside of their mental framework will either not be perceived, be dismissed, or edited to fit. Like a common snap-shot camera cannot perceive x-rays or even ultraviolet light – and vice-versa. Or, like an audio cassette player cannot interpret the data on an DVD disk – or vice-versa. The circuitry is just wired too differently.

Due to the progress of the human species, it may appear that a broad imagination is at play, but I don’t see that. Most science fiction stories as well as science researchers assume extraterrestrial life forms advance and develop along the same path as life on Earth. I do not believe that is possible because of the zillions of variables that played out for life on Earth to have come to be as it is. Due to the zillion to the zillionth power number of variables, I think it is unlikely there is an exact, or even similar, match anywhere in the universe. The SETI organization (Search for Extraterrestrial Intelligence) is an organization of renowned astronomers, astrophysicists and other science disciplines searching the sky for radio waves from other planets assuming that if there is intelligent life, they will communicate with radio signals. That is assumed simply because humans learned to communicate with radio and it is assumed that humans are the universal example of intelligence. I feel certain that there are many other methods of communication beyond radio. Humans not discovering it doesn’t mean it isn’t there. I suspect that realistically, radio is quite crude.

It has become clear to me that how a person perceives their world is their basis of understanding and their framework for their scope of imagination. You have probably heard the expression that we are a product of our environment – the product of all the variables that molded our existence. Likewise, I would say that our mentality is a product of our perception.

If one sees someone experiencing something or behaving somehow different from another persons perception of the world, then the perception of the experience or behavior is mentally edited to fit their imagination framework. It seems that a true understanding is near impossible. For example, autistic sensitivities are almost never experienced by non-autistic people. Thus, it is essentially impossible for them them to comprehend what that sensitivity is like. It can be explained in explicit detail, but since they have never experienced anything like that, they are not able to imagine it. They have nothing to relate it to. Like trying to describe to a person that is totally blind from birth what the color blue looks like.

If an autistic child is seen hunched over in a corner with his/her hands pressed tightly against their ears and banging their head against the wall; it is thought that the child suffers a deep mental illness with very limited intelligence and comprehension. In reality; probably not. The reality is that the observer of the child has no idea nor neural framework to imagine why the child is doing that. That is because they have never experienced, thus can imagine the level or nature of torture the child is suffering from the sounds, lights, etc. that they are experiencing. The typical person never experiences anything like that so they cannot understand or imagine it. You can say it is like this or like that, but none of those examples helps because none of the examples accurately conveys what the child is experiencing to someone who has never experienced anything like it. The non-autistic person does not have any of those sensitivities to invoke such torture. The same sounds, lighting, etc. is completely comfortable, if even noticeable, to the non-autistic person. Note that astronomical science has discovered the existence of dark energy and dark matter. Neither of these can be “seen” or directly detected thus understood. The existence is only acknowledged by the effects seen on visible, detectable matter and energy. Like the autistic child hunched over in a corner with his/her hands pressed tightly against their ears and banging their head against the wall, an observing mental health professional might understand there is something going on there, but can’t understand the actual internal feelings of the child.

This study is an example of what I’m talking about.
[Research survey] Seeking Autistic Participants for a Research Study (18+)
The study was an attempt to understand why autistic people are at increased risk of suicide. The study was conducted by an on-line survey. Unfortunately, I was unable to provide the answers that pertain to me, because the survey provided all the answers. The study was limited to picking from a menu of predetermined answers. Since none of the predetermined answers were correct, or even close, the survey could not provide the information it sought nor what I had hoped to convey. The survey was framed by the mindset of the researchers. The mystery the survey hoped to answer does not exist in the researchers mindset, thus an accurate view of why autistics are at an increased risk of suicide cannot be answered by the survey that was created for that purpose. The researchers will remain at a loss for the answer.

I think most autistics are eager to communicate (I certainly am), but the effort to match the NT’s format is exhausting and painful. Being weak or unable to sense and control expressions, tone and mannerisms (a key component of NT communication), when the effort is exerted, the result is typically misunderstood and often met with anger and scorn. Learning how to control expressions, tone and mannerisms would be like a blind person trying to learn how to mimic or appear not blind. They might occasionally pull it off impressively well, but they could never go through life perfectly mimicking a sighted person.
 
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Brilliant.

However, I still want to query whether this gap may yet be bridged? Because even what you say here somewhat does start to bridge it, surely? As in many major scientific advances, you are pointing out a huge blip in how things are currently understood. You are opening the door to radically different interpretations.
 
The survey was framed by the mindset of the researchers.

Following this path, & adding @Thinx ‘s ideas, at some point the surveys (and grants and papers) could be written by those of on the spectrum.

Perhaps I am leaning too much towards optimism.
 
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I saw that questionaire post and I found the researchers idea to be poorly expressed at best, and at worst, contemptuous. Right in the introduction they say "I want to see whether risk factors that we know are important in non-autistic people are relevant for autistic people".

Seriously, WTF? The risk factors that are important for non-autistic people and autistic people are the risk factors for humanbeings. That is just the way it works.

If they had said "We want to see if the risk factors for suicide in autistic people differs from the risk factors for non-autistic people" my opinion would be different.
 
Brilliant.

However, I still want to query whether this gap may yet be bridged? Because even what you say here somewhat does start to bridge it, surely? As in many major scientific advances, you are pointing out a huge blip in how things are currently understood. You are opening the door to radically different interpretations.
Following this path, & adding @Thinx ‘s ideas, at some point the surveys (and grants and papers) could be written by those of on the spectrum.

Perhaps I am leaning too much towards optimism.

I would like to clarify a missing point in my post. I did not mean to suggest that this disconnect was hopelessly insurmountable. As stated, I do believe there are elements of everyone's mentality that is not perceivable by others, regardless of their neurocircuitry.

My hope is for researchers - indeed everyone - to understand that. To understand everyone's internal mental circuitry is unique, thus everyone's sensitivities are unique, and it is OK to not be able to realize what they are feeling, but to realize that they are feeling something different from you. It's OK to not understand or know something as long as you understand that you don't know.
 
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I saw that questionaire post and I found the researchers idea to be poorly expressed at best, and at worst, contemptuous. Right in the introduction they say "I want to see whether risk factors that we know are important in non-autistic people are relevant for autistic people".

Seriously, WTF? The risk factors that are important for non-autistic people and autistic people are the risk factors for humanbeings. That is just the way it works.

If they had said "We want to see if the risk factors for suicide in autistic people differs from the risk factors for non-autistic people" my opinion would be different.

I couldn't agree more.
Additionally, if they really wanted to answer that question, the should have allowed the survey taker to actually answer the questions instead of having to choose from a list of wrong answers.
 
Real dialogue, like you described above, is one of the best things about life. Well, in my opinion anyhow.
What you’ve written here is great stuff @Ken .
Having some confidence that the future will bring this to life is what keeps me from despair for humans. Because as is so obvious this week, it’s not only between academics (not saying all academics are poor communicators not at all) and us on the spectrum whete communication and dialogue is sorely, even tragically needed.

Bohm dialogue
 
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