Category Archives: autism

My Visual Waves of Autistic Thinking

I am an autistic woman who thinks in a variety of ways – all of them being visual. One of those ways is with thought waves. Here is a description:

Thought Waves

The sound

           And movement
                   
                    Of colors
                              IS
                    The “stuff” of my thinking

Moving parts

And color sounds

Is what I watch

When contemplating

What you are saying

Or in private

Is a generation of complex idea thinking

A moving, sounding, mesmerizing,

Extrapolating process

Is my thought wave

Time taking

Color thinking

When people talk to me my brain responds by automatically creating and matching an internal thought wave to the words I hear. The thought wave is made of moving color pulsations that generate sounds. Even though spoken words are the medium most often used by people to communicate with me, I am wired to connect to these words through the sound and movement of colors.

Once the movement and pulsation of sound in the thought wave is stable enough I can translate it into words. This is the way I think. It moves quite fast, but even so, tends to be slower than the speed of conversation. Because speed is so valued by society we tend to give people no more than a few seconds to respond to our spoken words. (Endow, 2013).

Thus, my visual way of thinking, when I am in conversation with others often means my timing is off. This comes to light in a couple of different ways. By the time I have a response to something that was said, the conversation has moved on so the response seems awkward, as it doesn’t fit into the moved on conversation.

Another thing that happens when I am in a group conversation is I tend to talk over people. It is not intentional. What happens is my timing is off. Either I say nothing, as it is not apparent to me where to jump in and when it is apparent the words don’t fall out of my mouth in synch with my thoughts. By the time I start to say my words the space in the conversation has gone by and my words start during the time the next person has started talking. Some days this is more noticeable than other days. It is impacted by my state of sensory regulation (Endow, 2013).

Selection adapted from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology

Note: The author is autistic, intentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language.

BOOKS   BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology.  Lancaster, PA: Judy Endow.

Endow, J. (2012).  Learning the Hidden Curriculum: The Odyssey of One Autistic AdultShawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

        

The Autistic Sensory System and Patterns of Thoughts and Emotions

Often, people do not realize the sensory system includes movement. While it is easy to understand physical movement because we can readily see it, it is harder to understand the many impacts of internal sensory movement that is part of autistic daily life. The unseen areas of sensory movement differences impact thoughts, perceptions, emotions and memories.

Patterns become important to many people with autism. The patterns of movement outside our bodies often allow us access to our own ability to move, think and participate in the social fabric that is the world we live in. I have less of a cognitive load when I can simply discern and hook into the movement and patterns around me. The following example shows the importance of contextual or environmental sensory movement patterns having to do with internal repeating thought and emotion patterns. The myriad ways the autistic sensory system works both in our favor and against us seems to be largely unknown by most humans. Even so, I am not the only autistic who has articulated these things.

Personal Example:

I use the movement of things outside of me for purposes of thinking and of processing feelings. Recently, autistic friends have let me know that most people in the world do not do this and yet, my experience tells me this is a rather common autistic phenomenon.

Thinking

My thoughts are all in colors and pictures. Usually there are sounds attached, but not always. To think I need a way for the colors and pictures to move. When my sensory system is calm and integrated the thoughts sometimes move on their own accord. When my thoughts are not moving or moving too slowly I simply borrow from the archives. This means that my words come from something previously thought about and stored. I just pull from the archives and run the script. Sometimes I wonder if this is simply a form of echolalia.

When I am a little bit disregulated I am able to pull from the archives and run the scripts, speaking aloud their words, pretty fluidly. I doubt most people realize the thoughts are not original, but instead historical. As I become more disregulated I have higher probability of pulling something from the archives that isn’t a particularly good match for the current conversation. I also have an increasingly narrow swatch of the archives available to see and pull from. The best match from the limited swatch is at best not relevant and at worst downright offensive to those around me. It is one reason why I work hard at staying regulated – I want the lowest probability of unintentionally offending friends and co-workers in my day-to-day life.

Emotions

My emotions are also in colors and pictures, sometimes with sound and always with a high degree of movement. The more intense the emotion the more patterned the movement of colors and pictures become. Emotions that arise from interactions with others can get really big really fast. The colors and movement pattern of the emotions are infused with snapshots of the current situation. As the pattern of color movement happens, portions of the snapshot are stretched and highlighted. When the emotions are positive the stretching and highlighting of the snapshots are generally either amusing or very beautiful. When the emotions are negative it makes the snapshots look similar to horror movie scenes with grotesque exaggerations.

The visual emotion scenario my brain creates runs in a predictable sequence over and over, each time through with an increasing vividness. Thus, a good and positive sequence can become quite nice and very relaxing and generate soft feelings towards others that are in the pictures, while a difficult or negative sequence becomes more and more horrifying as the loop cycles over and over. This is how I experience emotions.

The Patterns of Thoughts and Emotions

Besides my thoughts and emotions being comprised of colors and pictures and their sounds and movements they also occur in the context of unlimited patterns and combinations of patterns. I do not have control of the patterns any more than I have control of the colors, pictures, sounds or movement. Or perhaps it would be more accurate to say I am unaware of any control. I am always hopeful that one day I will be able to exert control over some of this internal thinking and feeling process as I imagine that would make for an easier time interfacing with people around me.

The patterns are important, because whether in thought or in emotion, that is where I can impact a change. When I have a friend who will listen to my thoughts or is willing to hear the same patterned emotional story, after several times through I can latch onto something – usually a snippet of color or movement that comes with their words – that becomes helpful in breaking up the pattern and heading towards a new or different pattern. Practically, this means I am able to shift an emotion or incorporate new words or ideas into my thinking.

Most of my friends are not able to hang in there beyond the second or third pattern repeat. If it is a thought pattern I am attempting to repeat they stop me and tell me I have already told them my views. Sometimes I am perceived as stubborn and con- trolling because I am saying the same thing over without incorporating their ideas. This makes them feel like I am talking at them rather than with them about the topic at hand. As soon as I recognize this I stop, but typically the damage has already been done in terms of how people view me. When I am in the midst of an emotion pattern I repeat the visual loop I am seeing over and over. My friends report they feel they are not helpful as I am just repeating myself and not taking their words into consideration. They tell me they feel they are wasting their time because I am not listening. Typically, they walk away in frustration.

The Resolution of Difficult Thought and Emotion Patterns

Most friends are not able to be helpful to me in interrupting my negative thought or emotion patterns only because they do not see that sticking with me while I replay the pattern might be helpful. Most friends seem to need to be able to make a positive impact the first time through. Really good friends allow a second or third round of my repeating pattern, but then do not see any benefit in continuing on in a cycle they seem unable to be helpful in altering.

Because people are generally not very helpful to me in changing the patterns of negative thoughts or emotions I have other ways that are helpful. All of the helpful things for me involve some sort of movement outside of me that has either nature sound or no sound attached to it. When I put myself in these contexts I allow the thought or emotion pattern to run repeatedly until some element of movement outside that pattern presents itself in a way that my neurology can latch onto. Once this happens, the thought or emotion pattern can start to change. Sometimes this can happen in a few hours, but most of the time it takes several days. It is hard work. There are a few thought and emotion patterns that I have been trying to interrupt and change for years.

If I do not have lots of energy I find it helpful to be outdoors. Sometimes going for a walk, other times just sitting outdoors in solitude watching the patterns of nature is helpful. Eventually, something in nature’s pattern will hook into the thought or emotion pattern and effect a positive change.

If I have more energy I can read a book or engage in creating a work of art. This allows for the same result of something in the pattern of the reading or the act of creating to hook into the thought or emotion pattern to effect a positive change.

The interesting thing about this is that generally I become cognitively aware before my thought or emotion pattern changes. For example, if I misunderstood something with a friend that produced a negative emotion pattern and then discuss it with my friend, I will cognitively understand my friend’s perspective before I am able to interrupt the emotion pattern.

Practically, this means that even though I understand my friend’s words and the words do inform me that the pattern I have running is now faulty, my neurology will continue to repeat the pattern and to experience the negative upsetting emotions until some movement pattern outside me can interrupt and change that internal pattern. My friends sometimes interpret this as me not being able to take their perspective. I know it looks like I am stubbornly hanging onto my false take on the situation even though my friend has told me their take on it. It is exasperating to them. It is to me, too.

Even though I understand their words and their perspective the pattern of thought or emotion is still running. It is more dominant and powerful than I care for it to be and I am not able to will it away. Believe me, I’ve tried! Instead, I need to work with it by finding some other movement to hook into that will serve to interrupt and change the pattern to match my newer cognitive understanding.

Here is a poem from my childhood that illustrates using a movement pattern in nature to be able to think about my thoughts from the day. When the pattern of nature’s movement was over, so was my ability to continue thinking. At the time I wrote this poem I did not have the words to explain it further than the words of the poem. Today I do. That is progress – slow – 60 plus years in the making, but progress in understanding my own autistic neurology! (Note: I no longer see myself as an alien who does not belong on this planet, but did back then.)

Dog Walk Air Colors

brown, soft hush puppy skin folds swaying too and fro as short legged clippety-clops echo off the sidewalk

the pink-yellow air of a going down sun
allow the girl and the dog forward walking room into the future

by providing a reliable unchanging pattern of air color rhythm every night after day, every day after night
predictably reliable over and over, again and again

the girl lent the air colors a space inside her adopting the yellow-pink air
along with it’s early-time night of lavender-blue to herself

then…
tying the dog by his house she went back inside her alien self to hide from a world she didn’t belong to and was not a part of

but one from which she could see and borrow dog walk air colors to become for a moment something bigger than the alien girl that she was (Endow, 2006, p. 100)

Selection adapted from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology

Note: The author is autistic, intentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology.  Lancaster, PA: Judy Endow.

Endow, J. (2012).  Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Reading Comprehension, Perspective Taking, and an Autistic Solution

Is perspective taking important to reading comprehension? Of course it is! Understanding why characters are behaving in certain ways is crucial to comprehension. We also need to be able to understand that different characters have different perspectives and to be able to shift back and forth between characters and their particular perspectives. Because of this, in reading and in life in general, autistics are often admonished to “put yourself in someone else’s shoes.”

To say something like, “put yourself in someone else’s shoes” assumes a shared experience in the way we think and handle information. That is likely not the case when it comes to autistics, meaning that because their brains likely do not handle information in a neuromajority manner they do not share your experience. That is why understanding HOW autistics think is crucial to understanding how they can come to comprehend what they read or find their place in a multifaceted, fast paced world.

I am intimately acquainted with this admonition – “put yourself in someone else’s shoes” – because I have heard it all my life! In fact, growing up and during my adult years I have been scolded with this saying because I have not been able to put myself in someone else’s shoes. These scoldings never helped me gain this skill.

Coming to understand how my own brain handles information is what made the difference. Here is how I see it:

Why it doesn’t work for me to take your perspective:

As an autistic, it doesn’t work well for me to try to follow the admonition “put yourself in someone else’s shoes,” suggesting that if I do that I will somehow magically wind up understanding exactly how this other person thinks and feels. It seems to me this involves a multistep process.

Step One: To “put myself in someone else’s shoes” means I am supposed to think about how I would feel if I were in the same circumstance.

Step Two: It is assumed that once I think this through, I will have a similar feeling to the neuromajority person.

Step Three: It is thought that I will be able to act, based on my now similar feeling, in a way that will be much appreciated by the neuromajority person experiencing a given circumstance or difficulty.

Looking at these three steps, I am very able to accomplish Step One. I can think about how I would feel if I were in the same circumstance.

Step Two is where the problem comes in, because very often if I were in the same circumstance, because of my autistic thinking style, I would NOT wind up feeling the same way a neuromajority person feels.

Then, when looking at Step Three, yes, I am able to act on MY feelings, but it won’t work out well socially for me because MY feelings likely will NOT match the feelings of the neuromajority. So that is why it doesn’t work out for ME to TAKE your perspective.

Personal Example: Take for example the time I left the home of a friend without say- ing good-bye. We were done visiting, so I left.

Later, I found out my friend’s feelings were hurt because I hadn’t said good-bye; she wondered what she had said or done to deserve what she considered rude treatment. She guessed that she had somehow offended me.

None of this was true for me. I had simply left when the visit was over! No matter how much I think on this, I will never arrive at the same feelings as my friend. So, it will be of no benefit for me to try to put myself in her shoes.

However, I can come to understand how my friend thinks and feels about me leav- ing without saying goodbye and then respond based on her take of the situation, which I have learned to do. I always say goodbye when I leave now – not only with this friend, but with everybody (Endow, 2012)!

For most of my life, people have assumed that I am lacking because I have been unable to take their perspective. The truth is I can come to understand others’ perspective and act on this understanding even though I do not naturally take their perspective. In fact, as an autistic it is not necessary for me to actually TAKE the perspective of others! I only need to understand their perspective to enable me to act in a way that will be socially desirable.

This isn’t rocket science! The ways of the majority is assumed to be “right” and becomes a societal standard. Anyone who doesn’t measure up to the standard is assumed to be deviant or “wrong.” I don’t believe most people even think about this. They are not trying to be mean or in any way think or behave badly to autistics. Instead, it is merely an assumption most peo- ple act on without giving it any, or very little, thought (Endow, 2013).

Solution for Perspective Taking Based on Autistic Thinking Style:

As an autistic, I have learned that when I understand the “majority-is-right” assumption, I can make the necessary accommodations to fit more comfortably into the neuromajority world around me.

Rather than trying so hard to take someone else’s perspective – when that perspective is very foreign to me – what has worked very well for me is instead to try to understand the thinking style of a neuromajority person.

Also, I try to understand the way the feelings of neuromajorites are attached to their thinking because it is often different from mine and has to be accommodated for in order for me to fit more comfortably into the world around me.

To do this, I think of the neuromajority person and myself as characters in a play. This enables me to understand how to act in a compassionate manner based on someone else’s perspective without having to figure out how to take that perspective as my own – something I am not able to do simply because my brain does not seem to work in the same way as the brains of neuromajority people’s brains work.

I understand that thinking elicits feelings and that most neuromajority individuals think in similar ways and that this, in turn, leads to shared feelings. However, because I don’t always share this experience, I have had to figure it out another way.

I can NOT understand by simply putting myself in others’ shoes because even though I could and did put myself in their shoes, my neurology would not allow me to arrive at the same conclusion of a shared feeling.

Instead, I have learned to fast-forward the (current life situation) AS IF it is a play. That way I can see in my head the various ways people might come to look as the scene plays out. I can work out the effects of various words and actions on the characters in the play I have running in my head. Fast-forwarding allows me to act in a way considered “appropriate” without having to understand what the characters are feeling and why.

The amazing thing is that the more I act in a way that makes scenes come out favorably, the easier it is to pull it up again at a future time. In addition, after I acted “right” several times, I could anticipate the responses of others, and it was this anticipation that allowed me a soft feeling of my own – of wanting to relate to and be a part of making the scene come out nicely for all!

It is important for autistics to learn how to take a perspective other than their own according to how it works for their autistic neurology. This, in turn, will lead to increased ability to comprehend written materials where different perspectives are discussed.

BOOKS   BY JUDY ENDOW

Endow, J. (2019). Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology.Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult.Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go.Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment.  Shawnee Mission, KS: AAPC Publishing.

Autistic Cognitive Processing Differences

Over the past 20 years we have begun to realize that people with diagnosed with ASD have a different cognitive processing style. Professionals have looked at autistic people and by observing their behaviors have come up with at least three theories that together impact reading comprehension in students with autism. Here are those theories along with aspects of their basic definitions:

Central Coherence:

  • the brain’s ability to process multiple chunks of information in a global way
  • and viewing them in context
  • in order to determine a higher level of meaning

Executive Function:

  • the set of skills or abilities involved in organizing cognitive processes

Theory of Mind

  • ·  the ability to recognize the thoughts, beliefs and intentions of others
  • ·  to understand these are different from our own
  • ·  and to use this understanding to predict behavior (Carnahan & Williamson, 2010)

We can now look at these three theories and know that it isn’t all together true that autistic people are lacking in these areas, but instead their brains function differently than the brains of neuromajority individuals. It has been more helpful to me in my practice to figure out how the neurology of the individual I am working with actually handles information and how his automatic style of autistic thinking works. It hasn’t ever turned out to be helpful when I have tried to get individuals with autism to think and handle information in a neuromajority manner.

For many years I have ascertained that it isn’t that I, as an autistic, do not have theory of mind, but that instead, I do not have YOUR neuromajority Theory of Mind. When I am with other autistics I discover we share our own Theory of Mind. Our brains work similarly to one another and differently from yours. Simply put – we have a different operating system. Just like you cannot adopt my Theory of Mind, I cannot adopt yours.

Additionally, when it comes to theory of mind aspects of interoception now inform us that individuals whose sensory system is not giving them typical and reliable feedback do not have the physiological basis – feeling and understanding their own bodily sensations that are connected with their emotions – that is the prerequisite to being able to understand how the thoughts, beliefs, intentions and feelings of others might be different from their own (Mahler, 2018, Personal Communication). Understanding this difference allows us to go on to predict behavior of the characters in a novel and of people in the world around us.

Neuromajority Theory of Mind is based on a shared experience of the functional interoception body mind connection. When experiencing a sensory system that is not integrated, autistics struggle to access participation in this shared experience. Today we can use The Interoception Curriculum: A Step by Step Framework for Developing Mindful Self-Regulation (Mahler, 2019) to support a more functional body mind connection.

Likewise, much of executive function happens differently for autistic people. Previously in this book you have read a few examples of the storage systems of autistic individuals. These storage systems are examples of the rudiments of executive function for that person. It is the way their brain is organizing the information. Left to itself, it is has been my experience that initial styles of organizations, being literal and concrete and starting at a young age, are often outgrown as youngsters age. They simply acquire too much information for their early years storage system to serve them well. When we understand their system we can impact the size, functioning, speed of retrieval, etc. to make it more efficient. In addition we can use the typical supports all human beings use to stay on top of the many things we need to keep organized both in our internal thoughts and in our external lives as we go about our days.

Central coherence allows us to figure out why it is that characters in a novel or people in real life are acting the way they are acting. It requires the ability to process many individual chunks of information in the story or in the context of life, hold all those individual things in place and then match them to the context or backdrop of what else is going on in the story (or life) – all of this to then surmise a higher meaning.

As for myself I have had lots of trouble doing this over my life, but have learned along the way just how my brain does it. Additionally, I have learned how to best support my autistic style of thinking and manner of handling information to be able to comprehend what I read and much of the social aspects that living entails.

Point to Ponder:

I simply think differently than neuromajority people think. It is not an inferior way of thinking. It is just different. Even so, because autistics are measured according our deviation from the typical standard of normal our different ways are often assumed to be inferior or less than.

This is another example of why it is not helpful to think of autistic people in terms of their diagnosis. Because a diagnosis is based on deviation from accepted normal, an autism diagnosis shows a picture of what autistics ARE NOT and highlights what we CANNOT DO as compared to the majority normal. A diagnosis says nothing at all about the human beings we ARE or what we CAN DO.Our abilities and skills often remain unnoticed and untapped.

The majority of the people in the world do not possess our autistic skills and abilities. Because of this they do not notice them and really do not have a good way to understand them. This makes it nearly impossible for neuromajority folks to support autistic skill development in us. For example, if my way of thinking in the movement and sound of color had been understood by those around me and then supported over my growing up years I likely would have been able to produce paintings well before my 50’s (Endow, 2013).

Taken from  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. 

BOOKS   BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic AdultShawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum DisordersShawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go.Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.