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A concert of Autism – Public

So, this is quite a personal article, inspired by one particular situation and some of this article is very personal.  Some of it is meant for only one or two people, who will get the password to the private version!  But others might find much of it useful, and not just those who know me, so I’ve made this edited public version. It concerns autism and being autistic.  I’ve been formally diagnosed only quite recently, but I’ve known for over two decades.  There are lots of stereotypes about autistic people out there, but if you have some knowledge, you should be aware of the saying that autism affects each individual uniquely.  I only know about me and my experience, but what could make what follows useful for others is that I know from reading that a good part of my experience is shared in one way or another by others with autism, so if you know someone who is autistic, this might help you understand their patterns of behaviour and interactions.  Much of the article is extensive quotes from ‘The Autism Discussion Page’ on Facebook, also available in book form where I first found them.

I happened to pick up and open the book more or less at random and found some articles that had great resonance, hours after going to a very good concert where a particular facet of my autism jumped out and bit me, and several others, I think, including a small, sensitive person.

So, about autism, what actually is it.  Here, I think some quotes from that discussion page are in order.  Although the page is specifically for helping carers and parents with children, and I am a high-functioning adult who has mostly worked out how to survive and even thrive in the ‘normal’ world, in one or two areas I am still kind of at sea, particularly in relation to the individuals in question at that concert.  I’m pretty sure that if the person in question reads this, they will know who they are!  For those of you who don’t know, by the way, when it comes to this issue, people with brains wired in the regular way are often called ‘Neurotypicals’ (NT), whilst people with autism of some sort are usually said to be ASD (on the Autistic Spectrum Disorder).  The author is writing from the perspective of ‘NT’.  So, some quotes (there is lots of repetition, even after I’ve done some editing –  the nature of social media posts, but hey, isn’t repetition at the heart of education?.  On the issue of practical application, the last paragraph quoted is the one to keep in mind particularly):

Interacting is mentally draining!

I think what neurotypical (NT) people (especially teachers and parents) need to realize is that part of the main reason why children (and adults) on the spectrum have difficulty interacting and relating is their neurological differences. Our neurotypical brains have strong neurological connections between the different brain centers …  This is what allows us to process multiple information simultaneously, most of which is at a subconscious level, requiring minimal mental energy. On the other hand, for people on the spectrum, the neurological pathways between the brain centers are not well developed, making it harder… difficult to process multiple information simultaneously. Whereas NT people can multitask, rapid information at a subconscious (intuitive) level, people on the spectrum have to process this information “sequentially”, a little at a time, at a conscious level. They have to think through what we do intuitively without thinking. Now, they can eventually arrive at the same understanding, but it takes at lot longer (delayed processing) and require a lot more mental energy (since they have to consciously process it).

This is similar to what we (neurotypical people) do when placed in a social event for which we have never experienced before. Like being in a different country; not understanding their language and social customs very well. Without understanding the social rules, we watch and read what others are doing, appraise what is needed and then try and copy it. This requires us to concentrate, analysis and appraise what is expected, act based on that information, and then evaluate how successful we are at doing it. This concentration is exhausting. What usually comes naturally with little conscious thought, now requires concentrated effort. This is what it is like for people on the spectrum on a day to day basis. Just trying to regulate a typical day at school can be so draining for them. Spending two hours at a birthday party can be totally exhausting for children on the spectrum….This inability to process multiple information simultaneously is a major reason for many of the social struggles people with ASD experience.

This social processing issue is common across all members on the spectrum. They can be very bright, but still have these processing problems. This is hard for people to understand. They assume that since the child is very verbal and bright, that they must “intentionally choose” to misinterpret instructions, and act differently than others. For the more verbal and cognitively able children, this disability is more hidden; masking their difficulties. That’s why awareness training for significant people in the child’s life can be important.

Simultaneous vs. Sequential Processing

it also results in delayed information processing, sometimes requiring 30-60 seconds (or more) to process what we may process in a few seconds. Not only is this very draining, but it often leaves the person struggling to “keep up” with the speed of information. Frequently they are left processing only bits and pieces of the total information, since much of it came and went before it could be processed. So, when you are acting on only pieces of the information, your interpretation and resulting behavior often is out of sync with the rest of us. This is often why the person on the spectrum seems to be a little off beat with us when interacting.

Many people on the spectrum actually think in pictures, and not in words. For them, they have to rapidly translate our words into pictures, before they can interpret meaning. This further slows down and delays the processing….

People on the spectrum are going to have problems multi-tasking, and filtering out distracting information. They either will hyper-focus on specific, sometimes irrelevant details, or get distracted by too much information struggling for attention.

Seeing the Big Picture (Central Coherence)

For many people on the spectrum, their brains tend to … focus on the detail, and not the overall picture. They struggle to see the invisible relationships between the parts, and have to search for overall meaning by piecing together the details. They are more acutely aware of the fine detail, and do not immediately get pulled into seeing the relationships (hidden meaning) between the parts. They first scan the many details and then put them together to form the overall meaning. They tend to think “specific to general” rather than “general to specific”. They see the parts literally, with less bias, and then piece the parts together to form the overall picture.

… when it comes to interacting and relating, this weak ability to rapidly interpret the overall picture (central coherence) can leave them struggling.

It is very important to keep in mind the difficulty people on the spectrum have in understanding the invisible cues, relationships, and context that provide meaning to much of what we interpret. This is why we cannot “assume”, provide information very literally, and clarify then verify understanding. Do not assume!

Social Anxiety and Central Coherence

The label “central coherence” is our brain’s ability to see the relationships between the details of our perceptions, to give meaning to what we are experiencing. It is the brain’s ability to immediately look for the “hidden meanings” and “see the big picture” that allows us to smoothly interpret what we experience and dictates how we respond. This perceptive ability allows us to apply meaning to a flux of detail, read what is expected, and stay coordinated with world around us. Seeing the “big picture” gives us the reference point for interpreting what we are hearing and seeing.

This process, central coherence, is what gives us the ability to “read” two main invisible ingredients necessary for understanding the world around us: (1) reading the invisible “context” (situational meaning) for which events are occurring, and (2) reading the “thoughts, feelings, and perspectives” of others to apply meaning to what they are saying and doing. Both “context” and “perspective taking” are the invisible relationships that provide the backdrop to how we interpret and act upon what we are experiencing. All our actions and words change meanings based on the invisible background of the context of the situation. What is said and done has different meanings in one situation as compared to the next. ….We have to be able to see the big picture to get the “gist” of what is going on. Without the ability to read the context, we would often be lost and confused.

This ability to read the context (backdrop) also allows us (neurotypical people) to predict the thoughts, feelings, and perspectives of others. The meaning to what we see people saying and doing is determined by the context of the situation. …. People’s actions and words have multiple meanings for which we would not understand if we could not effectively read the context around them. A smile can have multiple meanings. Your friend smiling at you in the hallway means something different than when the bully smiles when he catches you alone in the hallway, or the pretty girl in sitting in front of you turns, makes eye contact with you and smiles. When interacting with others we immediately read the “context” and “perspectives and intentions” of others to interpret what is going on and what is expected of us. This ability, central coherence, is so important for daily living and sense of security. It is central in relating in our social world.

Without this central coherence (seeing the big picture) we would often be lost and confused, stumbling through a maze of detail, without good meaning. We would not have the “hidden backdrop” that we apply meaning to all the details. The world would be “literal”, what you see if what you get. However, since our social world is not literal, there will always be “uncertainty” that we cannot grasp. We would not be able to immediately “connect the dots” and read the plot behind what is going on. This ability to see the big picture is what gives us our sense of “safety and security.” To immediately understand what is going on, and predict what will occur. Without this ability we would be anxious and insecure; unsure with what is going on and needed from us. Always reading things literally and misunderstanding what is needed. Never really knowing if we “get it” or “fit in.” Our basic sense of “safety and security” is vitally contingent upon our ability to “read the big picture” and match our thoughts and actions to it. Without this ability we would have strong “generalize anxiety!” This is often the experience for those on the spectrum.

People on the spectrum are said to have weak central coherence. Their brains do not immediately read the big picture. They clearly see the detail, but without intuitively reading the invisible relationships between the details, they are often missing the hidden backdrop that gives meaning to what they are observing. They have difficulty reading both the “context” and “perspectives of others” that are required to adequately interpret what is going on, and what is needed. Their brains want to read things literally, and become anxious with all the hidden meaning that is invisible to them. The fact that our words and actions change meaning based on when and where they occur (situational context), makes it very confusing and anxiety provoking for them.

This lack of certainty creates strong anxiety and insecurity. People on the spectrum often misread and act out of sync with what is going on. They cannot predict accurately what is intuitively inferred and expected. Our social world is so dependent on this ability to read context and perspectives. Without strong “central coherence”, the brain is frequently unsure and anxious in our social world. Social anxiety is very high, as well as task performance anxiety (worrying about meeting expectations). These two together often create ongoing “generalized anxiety” that permeates their daily living. They are frequently unsure and “on guard”. The only time they can relax is when they are by themselves and controlling everything around them. The world has to be “literal” to be safe. Unfortunately, there is very little in our social environment that is literal and predictable for them. So, when you wonder why people on the spectrum are so anxious in social situations, remember they are not reading the backdrop that allows them to make sense of what is going on! Slow down, make it more literal, and clarify the context that they are missing.

{People} on the spectrum get overwhelmed when there is (1) too much detail, (2) too much flux (constant change in the detail) , and (3) too much uncertainty! …. As you might expect, this uncertainty creates strong anxiety and apprehension. The brain panics when it doesn’t know what it is walking into.

To lessen the anxiety, you must lessen the uncertainty (increase understanding). …. WE automatically understand the “plot” which gives meaning and understanding to all the detail. This gives us security. {Autistic people often don’t} grasp the plot, so life always represents uncertainty and insecurity. So you have to provide the plot, so the details make since, and he can feel more safe and secure. Hope this helps.

Connect the Dots, Define the Plots!

How can we assist them in understanding, predicting, and responding to a world that misses the “gist” of what is going on? How can we help the “literal” see the “invisible?” Plain and simple, we have to connect the dots, and define the plots for them. We have to make “visible” that which is “hidden.” Lay out concretely what is abstract. We have to concretely interpret what they do not see. We have to make obvious what is taken for granted by us.

Fact vs Inference!

Socially, when relating with others, this inferring helps us read the thoughts, feelings, perspectives and intentions of others (theory of the mind).  This inferring allows us to share mental states and experiences with others, and allows us to think about how others are thinking and predict how they will respond.  It helps us pattern what we say and how we act.  It also allows us to stay connected both mentally and emotionally during conversation.

The brain wiring for people on the spectrum (ASD) makes it difficult to look past the detail for the overall picture.  It is more focused on reading the concrete details (facts).  What you see and hear is what you get.  ….  Since they do not immediately infer hidden meaning, they also are not looking at subtle cues (facial expressions, body language, voice fluctuations, etc) to infer what is meant when something is said.  Consequently, our communications move too fast and at a different level from theirs.  We are processing inferentially, and they are processing factually.  They are looking at the detail, and we are looking at the global meaning.  Although they may eventually get to the meaning we infer (by piecing together the detail and facts), it will be delayed in relation to the social processing we are doing.  They often have to think through the detail, while we intuitively infer.

Now, when communicating with people on the spectrum, it is easier for us to interact at their level of processing (factual) than to expect them to relate at our inferential level.  Whereas we can communicate more literally and factually, it is more difficult, and sometimes impossible, for them to think inferentially.  Hence we need to say exactly what we mean and mean exactly what we say!  Leave little to be inferred.  Say what your thoughts are, explain your feelings concretely, as well as your perspectives and intentions.  Do not assume the person is reading your thoughts, feelings, perspectives, and intentions.  Spell everything out correctly, and verify understanding when possible.  Clarify what you want and what is expected.  Since this processing can be delayed, make sure to pause and give the person time to process.  In all areas of life, when sharing information, we need to make sure we respect the factual method of processing.  When we do, relating becomes much easier.

As I said, that last paragraph is key.

For me, most social situations I’m in at the moment, I’m mostly fine with.  I do get paranoid, but can usually work through it.  And as they say, just because you’re paranoid…..  sometimes I’m pretty sure I spot things that are really going on, things that aren’t coincidence.  Sometimes. But there is one situation that always seems to get to me, and that’s the one that jumped out at the concert.  All that stuff about the delays, that’s what applies.  I know I must seem to move – do move – slower than a zimmer-frame wielding geriatric snail stuck in jello.  I know that something is going on.  …..  So, I am watching closely to try and understand.  There’s all these signals coming in from family, all big smiles….

…. the seemingly simple and light issue of whether to come over and just say ‘Hello, how are you?’ becomes weighted with heavy significance, a matter to consider with care.  ….  It is indeed all very emotionally draining for me, which is why I so often resort to writing.  But even writing stuff like this is emotionally draining and is stretched out over days….

And, although this article was triggered by one situation involving a concert and a piano, on a more general note for any reader in the local area, I’m an autistic pianist, poet, author and theologian.  If you have a piano in your living room, or venue, and want me to play, and talk, though perhaps not at the same time, then drop an email to nathanaellewis (at) hotmail.co.uk.  I can talk on numerous issues.  Another ‘just a suggestion’.