Category Archives: Autism

Autism and the Sensory System: Part 4 of 8

Autism and the Sensory System
Part Four: Processing Delays

Autistics often experience a variety of processing delays. Sometimes this is directly related to the processing style our brain is employing. For example, in linear processing as discussed above, the processing task simply takes longer when one sense is processed at a time, thus a processing delay becomes evident.

Other times the processing delay is related to our general sensory disregulation. For example, one time at a graduation party for a friend I started losing the feeling in my hands. This happens sometimes when I am disregulated. Body awareness fades. If I catch it soon enough and get some input such as squeezes or light scratching on my hands and arms the feeling returns. Since I was at the party with a friend and we were both having a good time I didn’t want to leave, so opted to get some sensory input and see if then I might be able to stay. The friend and I went out to the car. She was squeezing and lightly scratching my hands and arms. I could see her doing it, but couldn’t feel it. Wanting to get back into the party I said, “I can’t feel that. Squeeze harder. Scratch harder.” She complied too no avail. I thanked her for trying and went home while she went back into the party. The next morning I woke up with my arms feeling as if they were on fire. I used ice bags and it took three days for the feeling to subside completely. This is an example of a physical feeling coming in too big along with a several hour processing delay.

To further confound the situation sometimes a processing delay is simply that several years later an element of a conversation or situation pops up and is processed. We all have old memories that sometimes get triggered by current events of the day. It seems when autistics have memories there often times is some delayed processing that happens along with the memory running in our brains.

For example, I recently saw the whole segment of pin the tail on the donkey game from a childhood birthday party delivered to me compliments of my visual thinking style. Back then, during the game I was told by an adult using an exasperated voice to wait a few minutes. I didn’t understand why I was being told to wait because I was NOT asking to take my turn. When this video ran in my head recently I could see that right before I perceived I was being instructed to wait another guest had asked if she could have a birthday cupcake.

It was only then, decades later that my brain processed that scene in a way to let me know that back then the wait instruction was not even meant for me, but for another child. This is important because at the time I thought the cranky sounding adult was assuming I was not acting correctly and therefore I was somehow being a bad person. Autistic adults often experience a pervasive feeling of being somehow bad or wrong and cannot figure out why this has become their truth. I expect that at least some of this is to do with the way our brain processed information from the world around us as we grew up.

Today as a clinician I see this play out for some of my autistic clients as they find their way out of a depression. It is a relief for them to find that some of the story running in their heads about the sort of person they are is based on the way their brains have processed past information rather than a truth about their character. One client summed it up quite nicely when she said, “Wow! I’m not the bad person I thought I was!”

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

Note: Approximately once a week a new blog in this series will be released.

Autism and the Sensory System

Part One: Introduction
Part Two: Taking In Sensory Information
Part Three: Processing Sensory Information
Part Four: Processing Delays
Part Five: Storing and Retrieving Information
Part Six: Categorization of Information
Part Seven: Critical Mass Development
Part Eight: The Role of Interoception, The Eighth Sensory System

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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.

Autism and the Sensory System: Part 3 of 8

Autism and the Sensory System
Part Three: Processing Sensory Information

Besides differences in the way sensory information comes to autistics, once there, the information may be processed differently, too.

Although there are several ways people on the spectrum process information, three ways seem to impact them most (Attwood, 2007):

Linear processing happens when information is processed using one sense at a time.

This explains why even though a student was standing on the playground when a police car with sirens and flashing lights went by, he may not connect the sound of the siren to the police car, simply because it was not processed as a whole. Instead, it was processed in a linear fashion – first the sound of the siren, then the sight of the flashing lights on the police car, then the movement of the police car as it traveled down the street.  The student goes inside and reports that recess is scary. After all, that police car came out of nowhere and really startled him. Will that happen every time the bell rings at the end of recess? His assistant said nothing unusual happened during recess.

It takes longer to process information one sense at a time rather than when individual senses are processed simultaneously as a whole experience.

Here’s another example: When receiving a handout in class, a student with autism might

  • first have to process the feel of the paper in his hand,
  • then move the paper to his desk,
  • after which he can pop up the picture of the pencil in his mind,
  • which enables him to get out a pencil, and only then,
  • might he be able to attend to the worksheet.

If the verbal instructions have already been given, the student has missed them because his linear processing meant that he first processed feel, then sight, and then sound.  If the sound – the teacher’s verbal directions – happened before the student’s processing was up to sound, he very likely missed hearing the instruction.

Most often when this happens to students, they are told to pay attention or to focus. The truth is, he was paying attention and was focusing on the information deemed relevant in the moment by his linear sensory processing.

Mono-channel processing refers to using a preferred sense to process all information.

It is not that we make a conscious choice and prefer one sense over another; rather, our neurology dictates this by making information available to us in this way. Thus, we may not be able to process the words you are saying if we have been told to look at you (eye contact) while you are saying them. We may only have one channel available with which to process incoming information. This forces a choice. We can look at you, giving you the eye contact you deem necessary OR we can listen to the words you are saying.

In a classroom if the teacher indicates she wants students to listen to the important information she is about to say, this student will automatically turn away from his teacher SO THAT HE WILL BE ABLE to hear the instruction.

If he can only process using one channel, it makes sense that if it is important to hear what the teacher is saying, this student will not look at the teacher so that he indeed might hear! See how compliant it is for this student to quickly turn away from the center of instruction when his teacher says, “Pay attention to what I am saying!”

Nondiscriminatory processingrefers to all incoming information getting processed equally.

Individuals with autism do not consciously have any choice about this either. Nor do they decide how to process information in any given situation. It just happens!

For example, when an autistic processes incoming information in a nondiscriminatory style, this may mean that while he is in the library,

  • the hum of computers,
  • the sparkles seen from fluorescent lights,
  • the reflection of the light on the table top,
  • the movement of other students,
  • the various smells of old, dried paper and book bindings,
  • along with feeling too warm and
  • having one shoelace tied more tightly than the other,

all take his attention just as saliently as the purpose for which he is in the library – to find and check out a book or DVD.

With each bit of information coming in equally salient, it is difficult to know where to focus one’s attention. I think It is truly amazing that anything at all gets accomplished when a student has a nondiscriminatory style of processing (Endow, 2011)!

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

Note: Approximately once a week a new blog in this series will be released.

Autism and the Sensory System

Part One: Introduction
Part Two: Taking In Sensory Information
Part Three: Processing Sensory Information
Part Four: Processing Delays
Part Five: Storing and Retrieving Information
Part Six: Categorization of Information
Part Seven: Critical Mass Development
Part Eight: The Role of Interoception, The Eighth Sensory System

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 REFERENCES

Attwood, T. (2007). The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley Publishers.

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.

Autism and the Sensory System: Part 2 of 8

Autism and the Sensory System
Part Two: Taking In Sensory Information

All of us take in information from the world around us through our senses. We have the five senses we all learn in grade school – along with proprioception (body awareness) and another called vestibular (balance). The eighth sense to add to this list is interoception (pulls in information about internal physical sensations).

These senses work together to bring us information from the world around us.  For people with autism, the information gained from the senses sometimes comes in a bit differently than it seems to come in for people without autism.

The three main effects of this difference are that information may come in too big, too small,or distorted. This can happen in any, some, or all of the senses. Unfortunately, the difference is not constant over time, but instead variable.

When this happens, the world can feel unsafe or dangerous. It can feel like being in one of those mirror-distortion houses at carnivals. Imagine if that experience was thrust upon you and you didn’t know what was what – which experiences were real and which were illusions – and furthermore, that you had no way of knowing when it would stop.

This can precipitate varying reactions. It may cause the feeling of having physically disappeared or, perhaps the opposite – that one has become too large to fit through doorway. In addition, we may experience the movement sensation that being on a small boat in turbulent water can bring even if, in reality, our body is standing completely still on solid ground.

Autistics don’t know ahead of time how their sensory systems will deliver information to them. Intensity of incoming sensory information can vary from day to day, from hour to hour and sometimes even from minute to minute. Additionally, it is unknown just which difference (too big, too small,or distorted) might manifest and just how intense an experience might become.

Magnified (sensory information coming in too big)

 In my personal life when sensory information comes in too big each sense can be affected, but I do not know ahead of time how many senses will be affected. Practical examples of things that can occur include:

  • seeing dust sparkles cascading from fluorescent lights
  • feeling pain from raindrops hitting my skin
  • hearing car tires on the pavement on the road outside

 Sometimes, but not always, this magnified sensory information can be a delayed experience. For example, I often experience the sounds of a party a day after the party. Another phenomenon in my life is the sound of an ambulance or fire truck siren stays with me for hours. Sometimes is a continuous loud siren for hours and other times the sound drops in and out, causing startle reactions each time it starts anew.

Minimized (sensory information coming in too small)

When the sensory information is delivered in a minimized way autistics often miss out on important things. For example, if the sound of a teacher or boss’s voice is not salient enough to be tracked for a few hours it can negatively affect our performance. It is difficult because there is no warning signal that lets us know that information is not coming in strong enough so there is no way we can know to seek out what we are missing. Even so, because most people pick up the information, it is often unrecognized that autistics are experiencing sensory differences and a negative character trait towards the autistic is assumed such as not being interested, ignoring instruction or acting rudely.

I have had several students over the years that sometimes run their hands across all the lockers as they walk down the hall. Lots of autistics – students in schools and adults I’ve seen in clinic settings – will all of a sudden lie down on the floor. Often, this is identified as “a behavior” because that is how it looks to the adults in the room.

In reality, their sense of proprioception has faded to the point where it becomes difficult to feel their bodies. If the fading is not extreme they may run their hands across the lockers when walking down the hallway. If the proprioceptive fading is more pronounced the quickest way to get the feeling back to the body is to get as much of the body as possible in contact with a hard surface. Thus, lying on the floor becomes the solution.

Sometimes this solution can pose a problem like the time an adult client employed the solution in the grocery store parking lot! Her staff reported that she “would not get up until she was good and ready” to do so. Her reality was that she could not get up until her sense of proprioception returned which enabled her to get up.

To ensure safety when in the community this client received proprioceptive input (swinging or jumping on her trampoline) before going shopping. The proactive proprioceptive input meant she was much less likely to lose the feeling of her body over the next couple of hours and thus would not need to employ the solution of laying down either in the parking lot or in the store in order to restore her sense of proprioception.

Distorted (sensory information coming in distorted)

When sensory information comes in distorted we have all sorts of strange experiences! When I was a youngster in school I would laugh when my teacher’s voice sounded like it was run through a sound warper. Inappropriate laughter was the report only because nobody else heard and reacted to the funny sound of the teacher’s voice. Thus, my reasonable response given my experience got recorded as “inappropriate behavior.”

I easily become too hot or too cold. Additionally, my body often feels like it does not fit the furniture. These reactions are due to the distorted sensory information I am getting. I must do something to address the situation if I am to be able to concentrate on anything other that feeling too hot, too cold, or not fitting in the chair correctly.

I’ve lived in two houses during my adult life where I experienced the sound of the furnace cycling as a huge rushing wind. It would wake me up at night. I was so glad it was only for a few days at the beginning of the winter season as my neurology was getting used to the furnace sound. This enabled me to wait to turn the furnace on for the season until I was home for the weekend. I think it is really odd that even though the air conditioner makes a similar sound as it cycles, it has never been experienced as a sensory distortion.

We do not know when we are growing up that other people don’t experience the world in the same way we do. I always thought everyone else was just better than me. They were smarter than me and they knew how to get along in life much better than I did (Endow, 2011).  Today I know about the sensory norm and the sensory differences from the norm experienced by autistics. It is important to understand sensory differences in the way information is taken in because it has an impact on reading comprehension, conversation and life engagement for autistics.

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

Note: Approximately once a week a new blog in this series will be released.

Autism and the Sensory System

Part One: Introduction
Part Two: Taking In Sensory Information
Part Three: Processing Sensory Information
Part Four: Processing Delays
Part Five: Storing and Retrieving Information
Part Six: Categorization of Information
Part Seven: Critical Mass Development
Part Eight: The Role of Interoception, The Eighth Sensory System

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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.

Autism and the Sensory System: Part 1 of 8

Autism and the Sensory System
Part One: Introduction

The world we live in is set up in a neuromajority friendly manner. This means people with a typical sensory system and way of thinking can most often live and thrive in the world, but people who have autistic neurology often have a sensory system and style of thinking that is not the best match for living comfortably in the world. Additionally, autistic sensory system and thinking differences pose difficulties when it comes to reading the environment and comprehending written words along with tracking and understanding conversation.

Today we know that at least 90% of individuals with ASD have sensory abnormalities with sensory symptoms in multiple sensory domains (Baker, et. al., 2008; Leekam, et. al., 2007; Baranek, et. al., 2006). Many autistic people need to bring intentionality to keeping their sensory systems regulated.

“Sensory regulation involves actively adjusting amounts and kinds of incoming sensory information in a way that allows for optimal functioning because one’s neurology does not permit this to occur automatically” (Endow, 2011, pg 25).

During sensory regulation the system is balanced or regulated by providing either targeted sensory input or intentional sensory guarding from input that is aimed at providing the specific balance needed at that time to regulate the sensory system. It is hard work to keep the sensory system regulated, but is a requirement to access learning in a school environment, function optimally each day and to realize meaningful life outcomes.

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

Note: Approximately once a week a new blog in this series will be released.

Autism and the Sensory System
Part One: Introduction
Part Two: Taking In Sensory Information
Part Three: Processing Sensory Information
Part Four: Processing Delays
Part Five: Storing and Retrieving Information
Part Six: Categorization of Information
Part Seven: Critical Mass Development
Part Eight: The Role of Interoception, The Eighth Sensory System

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REFERENCES

Baker, A. E., Lane, A., Angley, M. T., &Young, R. L. (2008). The relationship between sensory processing patterns and behavioural responsiveness in autistic disorder: A pilot study. Journal of Autism and Developmental Disorders38, 867–875.

Baranek, G. T., David, F. J., Poe, M. D., Stone, W. L., &Watson, L. R. (2006). Sensory experiences questionnaire: Discriminating sensory features in young children with autism, developmental delays, and typical development. Journal Child Psychology and Psychiatry47, 591–601.

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.

Leekam, S.R., Nieto, C., Libby, S.J., Wing, L., & Gould, J. (2007) Describing the sensory abnormalities of children and adults with autism. Journal of Autism and Developmental Disorders, 37, 894-910.

Autism and Thinking in Layers

As a little girl, there was a single movie screen in my mind where I created one still life picture at a time. There was only room for one picture at a time. Pictures were created by the words people said. It was never a problem to add something more to the current picture.

For example, if plans were made to go to the park I would see myself swinging on a swing. Then, if it started to rain, I would add raindrops to the picture. Raindrops would not change anything at all about swinging on a swing at the park. I couldn’t understand why anyone would say that we could not go to the park because it was raining. It certainly didn’t look that way to me!

I had no idea that others were experiencing the world in a different way.

When I was a teenager I was institutionalized. One day, some girls in the dayroom were busy writing a story. As they talked, their words went up on my screen producing a picture. Then, all of a sudden, the girls changed part of their story. One girl tipped her pencil upside down, erased a few lines, and wrote in a new version.

Normally, this would mean I’d have to destroy the picture on the screen in my head if I wanted to continue to listen to the conversation. I had not yet developed a way to erase my pictures. But that day all of a sudden I realized if my pictures were created in layers, rather than on one page, I would be able to keep up when the story changed. I could trade in an old layer for a new one! It would be my way of erasing and changing something. And, the changing picture would still fit on that one screen I could see in my mind.

I am many years older now and continue to work with these ideas. Over the years I’ve trained myself to create pictures in layers. Learning this skill became my foundation for beginning to live successfully in the world of words. Once I was a teenager who lived in a mental institution. Today, I function quite well in the world both in my personal life and in my professional life having accomplished many things.

Over the past decades, many students I’ve worked with in public schools and clients I’ve worked with in therapy settings have experienced benefit when their autistic way of thinking is understood.

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

This book also has an appendix that contains templates to trace to make your own thinking in layers visual system. I hope you find it helpful. Click HERE to order book.

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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.