Tag Archives: sensory

Autistic Style of Thinking and Sensory System Impacts

As a teen living in an institution I learned many things. One thing in particular I figured out was what to do when inside my body I felt a rage brewing. The following is a selection from the first book I wrote in which you will see the how my autistic processing and information retrieval lead to ultimate frustration which in turn led me to problem solve – also using my autistic sense making abilities as seen in the sensory based names of the roads leading out of town as they provided the solutions.

It is interesting to note that at the time a diagnosis of autism had not yet been given to me. Even so, I was using my literal, concrete, think in pictures style to serve me along with my innate need for sensory system regulation. Often we think of autistic sensory needs and think- ing style as problems to be solved only because they are different from the norm. I encourage you to think of the autistic sensory needs and thinking style as a place to look for autistic sense making when interfacing with a world not made for us.

Getting Out of Town

     When the info she needs is somewhere inside her
     and she just can’t find it right then when she needs it

     she calls it Ultimate Inside Frustration.

     When she was a girl she coped by showing an array of behaviors
     that world-people outside her labeled “inappropriate.”

     She learned over time that silence was more acceptable
     to the people in the world outside her

     so she tried it.

     And this is what she did:

     She made a map with a city in the middle named
     Ultimate Inside Frustration
     and then drew a road to take to get herself out of this town.

     After that whenever she found that she was in town
     she knew exactly what to do.

     Instead of staying in town she would turn and run down
     a road with the signs pointing “OUT.”

     Here are the names of the roads on the map leading out
     of the town of Ultimate Inside Frustration:

Silent Road – where she can disengage from the outside world

Kaleidoscope Court
– where she can find comfortable looking
matching colors to see

Grey Square Lookout – where she can see the repeating pattern
of the same speckled grey squares on the floors

Hummingbird Lane – where she can silently hum the same few bars
of the very same tune over and over and over again

Lake View Drive – where she can watch or listen to moving water
in the lake, the shower, the sink or the toilet

Textile Turn – where she can stroke something very smooth and soft
or something with a repetitive pattern of texture (Endow, 2006)

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.

Introduction to Newest Book: Autistically Thriving

This blog is actually the introduction that appears in my newest book (Endow, 2019, pp. xiii-xiv) available as of last week.

MOST ANYTHING ABOUT AUTISM and learning typically start out with the deficits of autism responsible for the problem experienced by the autistic. Then, it is followed up with ideas on how to address the deficits so as to impact the problem. If I were to start this book that way I would next talk about the diagnostic criteria. Here is what the DSM-5 says:

ASD Diagnostic Criteria

Persistent deficits in social communication and social interaction across multiple con-texts (current or history)

1. Deficits in social-emotional reciprocity…
2. Deficits in nonverbal communicative behaviors…
3. Deficits in developing, maintaining and understanding relationships…

Restricted, repetitive patterns of behavior, interests or activities… motor movement, sensory, sameness, routine, xated interests in objects or topics
– Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013

In case you don’t know how the DSM diagnosing works I can fill you in. We have our everyday people on the face of the earth. They make up most of the population. Because this group makes up the majority we have decided their behaviors are typical and we label them normal. Then, everyone else is measured according to how far away from normal they land. And if they land far enough away from normal in enough areas they get a diagnostic label.

By design, DSM labels are framed in deficit terms. And in terms of diagnostics this deficit language is helpful. However, it isn’t very often helpful when we take this deficit-based language out of the diagnostic arena and use it to describe who and what autistic people are in this world.

We are ever so much more than the sum total of our diagnostic deficits. So, let’s begin with

autistic people – who are they? how do they think? what are their strengths? their skills? their way of understanding the world? How do they understand other people?

All of my life, until very recently, I have only known what I am not. It is because autism is largely measured by absence of neurotypicality. My hope for the future is that autistics coming up behind me will grow up with a more positive sense of self – learning who they are in this world rather than who they are not.

In that spirit I write from a perspective shift. A self-determined life is empowered through comprehension of the context in which we live. Let’s start with autistic people and comprehension – reading comprehension and life comprehension. How does it work? How do we empower autistics, based on their neurology, to comprehend what they read and to better understand the foreign land in which they find themselves living?

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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 Burnout and Aging

Last September I returned from a vacation that I had been dreaming of taking for several years. I had booked my vacation quite a long time ago. After booking it, my personal resources declined. Many autistics know this phenomenon as autistic burnout. I am beginning to understand that there is likely some interplay between autistic burnout and the aging process.

In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment. Twice during my adult life I had to severely limit my gainful employment because the burnout was too great to enable me to continue. I always have been good at planning and saving so each of these times I had a saving account to draw from for several months.

Finally, I had accumulated enough savings to feel confident to book one of my dream vacation! For many years I have found good deals on Alaskan cruises to see Glacier Bay and at long last I felt in a place to be able to actually book the cruise. I have a particular love of water in natural settings. It was very exciting to plan and dream of this upcoming vacation.

Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.

Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.

Then, my vacation time arrived and regulated or not it was time! And, I was excited – very excited. So, off I went – first to San Francisco for some days and then on the cruise. I was by myself most of the days in San Francisco. I did some sight seeing, but all in a way that worked well for me. I was not rushed and did not have anyone else with me. Most of my friends could not understand why I was looking forward to being completely alone on vacation in San Francisco, but it worked very well for me. I could come and go as I was able and stop whenever I felt the need.

I did have friends who met up to have a day in San Francisco before boarding the cruise. While on the cruise we went our separate ways during the day, sharing a dinner table for our evening meal. It was fun to compare notes on who did what during the day and it was just enough social demands for me to enjoy the company, but not be overwhelmed. I could go the entire day without speaking to anyone and walking around the deck viewing the waterways or watching different activities on the cruise ship.

Now that I am back home I have realized that this burnout is different. Even after a lovely undemanding time away my body regulation has pretty much stayed the same – it has not improved as I had anticipated. Now I am thinking this present autistic burnout is combined with effects of getting older. It is like my body has hit a new normal of sorts, meaning that it has slowed down. It seems that no matter how much sensory regulation I do in a day that my body will never get back to what I consider ground zero. Perhaps this part is some of the aging of my body – it just doesn’t spring back to where I can be all chipper and ready to roll full steam ahead.

While at sea I thought a lot about this. In fact, I left my ideas and expectations of my younger self somewhere between Juneau and Skagway. By the time I arrived in Victoria I was trying on my newly found freedom of being okay with the slowed down self of me. The walking tour along the seaside was going too fast for me to be able to take the photos I wished to take. When the tour veered away from the seaside trail I excused myself so that I could be alone. I took my jolly good time walking back to the ship and taking over 300 photos during a leisurely stroll, I enjoyed it immensely!

Now that I am home I am continuing to practice being kind to myself by adjusting my own expectations of how much I do in one day. As an autistic I have for several years been doing the same quantity of employment, housework, art production, regulation, reading, writing, etc. both daily and weekly. Following a schedule is important to me as is getting things accomplished. I didn’t realize my self imposed expectations needed to be adjusted.

Spending ten days on a ship surrounded by natural waterways helped me to understand that autistic burnout may be impacted by the natural aging process, meaning that I will not come out of an episode of burnout at my younger starting point. Because so little is known about autistic people and aging, those of us who are getting older can at least start a discussion about it. I personally am wondering just now if the years of acting – passing as a neuro-majority person – impacts the natural aging process. Do autistics age faster because so much personal physical resources are impinged upon in order to year after year appear to be as typical as possible so that we might fit in enough to pass as somewhat human to the rest of society? And if so, is this a fair price to pay? And fair for whom?

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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.

Originally written for and published by Ollibean in October 2016. Click here to comment.