Tag Archives: neurology

Autism and Consequences

One way people learn is from consequences. For example, if you leave your car parked outside with the windows down and it rains, the natural consequence is that your car seats will get wet. Sometimes a person with authority over another engineers a consequence for certain behaviors as a way to decrease the frequency of unwanted behaviors. For example, a mother or a caregiver might decide that if hitting occurs at the park there will be no going to the park for the next two weeks. This sort of engineered consequence for unwanted behavior works for most people most of the time. It is why we use it to successfully teach our children to become responsible citizens – responsible for themselves, their behavior, their belongings and beyond. These kinds of consequences rarely work well for individuals with autism.

Underlying Brain Functioning
For consequences to be effective in deterring future behavior, a typically functioning brain needs to be in place. For example, if an individual is prone to hitting others when at the park we decide that because he very much enjoys going to the park, the consequence of not going to the park for two weeks will help him to not hit or at least hit less when he does go back to the park.

The underlying brain function that causes this consequence to be helpful in reducing hitting is very intricate and is based on reliability of connections between many areas of the brain. In practical terms it means that in order for this consequence to change the hitting behavior, at minimum, these elements must all function smoothly for the person receiving the consequence:

  • Understand hitting is wrong
  • Love going to the park
  • Understand hitting at the park will mean no park for two weeks
  • Be negatively affected during the two week park ban, i.e. wishing it wasn’t so
  • Dislike the park ban so much that he is willing to not hit
  • Come to learn what he can do instead of hitting
  • Have the skills and ability to carry through with alternative behaviors
  • After returning to the park and finding himself about to hit – his brain quickly and efficiently connects all the dots, gathering up and synthesizing information from multiple areas of the brain in a split second whereby he can put together an informative and behavior-altering understanding that keeps him from hitting.

Most people have brains that can accomplish all the above bullet points. However, people with autism do not. Autistic people generally have brains that do not support the last bullet point. Remember, an autistic brain means the connections between areas of the brain are weak making it difficult for the brain to pull together information from the various brain regions – the very thing needed for consequences to change future behavior.

A confounding factor here is that autistic people, after an incident and when in a calm state, can repeat to you exactly what happened, why it was wrong and what they will do instead of hitting next time they are in a similar situation. Then, the next situation arises and the hitting again occurs. After the incident is over the autistic individual is usually remorseful, knows what he did was wrong, understands what the consequence will be and promises not to hit next time, reciting all the options he might employ other than hitting. Then, the next situation arises and the hitting again occurs. Repeat, repeat, repeat over and over and over.

Regardless of how many times the consequence of park ban is employed it never seems to work in terms of stopping the hitting. Many times people assume the consequence of park banning isn’t a big enough consequence so they up the anti. I have seen this get out of hand quickly and regardless of how big the consequence or how articulately the autistic individual can explain the behavior/consequence sequence it is not effective in producing the desired behavior change.

After a time of bigger and bigger consequences, parents, teachers and caregivers start blaming the person with autism as if he wants to be a bad person. They say he is making poor choices and ascribe character flaws such stubborn and mean. It doesn’t turn out good for anyone, including the autistic.

Ways to Get a Different Outcome
Once you understand autistic brains will most likely be unable to attain the last bullet point in the above list – not because the individual consciously chooses this, but because of the brain functioning available to him – it would make sense to stop using consequences in hopes of changing behavior. But, we still have the hitting behavior. What can we do instead? Here are some ideas that have worked for numerous autistics of all ages whom I have worked with:

  1. Escalating Behavior
    If the behavior is escalating in nature; i.e., if you can predict when it will occur because you can see the build up then you can prevent the behavior by intervening very early on rather than waiting until the last minute when it is impossible to stop the behavior from happening. In escalating behavior the physiological fight/flight kicks in right before the behavior occurs. This means the individual is operating on survival instinct, feeling he is fighting for his life, no matter how small and non-life threatening the situation actually is in the moment. Thus, intervention when the behavior is occurring fails. Successful intervention is at the beginning stages. For more information please look at Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With ASD.
  1. Non-Escalating Behavior
    If the behavior is not escalating in nature, remember the reasons an individual gets an autism diagnosis and address those areas – communication, social, specific deep interests, and sensory. In light of this, here is what I do to help prevent unwanted behaviors when out in the community.

A.  Proactively Address Sensory Regulation Daily
Strive to make sure autistic individuals are supported daily in sensory regulating activities. As an autistic myself, daily sensory regulation allows me to be employed and go out into the community each day. It is the same for others I’ve worked with. For the individual in the example, when he was well regulated he was able to cope with unexpected events better. This meant he was less likely to hit.

B.  Plan Schedule Ahead of Time
It is important for most of us to know what will happen ahead of time. This is true no matter how our autism presents. Very few autistic people can track a verbally recited chain of events that are to happen in the future. Some people need a written list. Some need a picture schedule. All of us, regardless of how autism presents in our bodies, like to know the plans rather than to have continual surprises randomly occurring.

C.  Stop Talking
As autistics get overloaded in sensory, social or emotional aspects of situations the ability to process and comprehend verbal input decreases. Helpers typically “help” by talking more. This is the opposite of what is actually helpful to autistics in tense situations.

D.  Use Alternative Communication
Even for a person who is highly verbal, an alternative way to communicate becomes essential in tense or overloaded situations. For example, one individual I worked with had a key chain with mini pictures of the van, a bag of peanuts (his favorite snack), his house, and his favorite video game. When he was having difficulty in the community, I would hand him this key chain. Offering the key chain was a nonverbal way to communicate our exit plan.

E.  Use Positive Reinforcement
In this example the pictures on the keychain showed the order of events and included two reinforcements. First picture was the van. Second picture was the bag peanuts that were in the glove box in the van. Third picture was his house where his favorite video game (fourth picture) would be available upon arriving. Thus, positive reinforcement got him out of the park when needed so as to prevent the hitting from occurring.

F.  Plan and Practice Exit Strategies
Use preplanned signals or visuals to exit a tense or problematic situation BEFORE any problem behavior can happen. In this example the keychain with mini photos was our exit strategy. We went to the park on three different occasions specifically to practice using the exit strategy. Once the strategy was practiced, including eating the peanuts on the ride home and playing the favorite video game, we then went back to the park for an hour – our usual park time. It was important for this young man to actually get his park time.

G.  Assure Social Understanding
After a difficult time and the individual is settled down remember to go back and insure social understanding of what happened. Most autistics are literal and concrete by nature. Social situations are rarely literal and concrete. Thus, we are prone to have a different take on social situations than most other people. I have found it helpful to draw out a situation, finding out the autistic person’s take on it and leaving space in the stick figure cartoon frames for the thought bubbles of other people. Often times the way other people think is a surprise to autistics because it makes no sense to a literal and concrete mind. Social constructs and socially accepted behavior in society are based on this thinking style of the majority. Many autistics benefit in learning this social information.

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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 June 14, 2016. To comment click here.

Autism, Visual Thinking and the Parking System

Many autistic people think visually. As a young child who thought visually I was often thought to be stubborn and insisting upon my own way when in reality I was merely trying to keep ahold of a thought. Today in my work I come in contact with many on the spectrum and see the same phenomenon at work. Let me explain with two examples:

Example Parking Objects: Every day Britt comes to school with a toy from home. It is very difficult for her to leave the toy in her cubby so she carries it with her. Sometimes this works out ok; other times it poses problems such as when the toy is large or makes noise or is something other children want to play with. Whenever someone attempts to put the toy in her cubby or elsewhere Britt falls to floor crying loudly and becomes inconsolable.

Britt is a visual thinker. When an object is out of site, it is as if it were lost forever because she can no longer see it. We placed a bright piece of construction paper placed by her cubby for Britt to use as a parking space. She put her toy in this garage and we took a picture. After printing it we held the picture next to the actual garage with the toy parked in it so Britt could see the picture was the same as the toy parked in the garage.

Next we played a game. We gave Britt the picture of Minnie Mouse in the garage to hold. We asked, “Where is Minnie Mouse?’ Britt could see both the real Minnie Mouse sitting in the garage and the picture of Minnie Mouse in the garage. Next we turned our back to the garage and asked, “Where is Minnie Mouse?” Britt could see the picture of Minnie Mouse in the garage. We increased the distance between the garage and Britt. As long as she was holding the picture she could see Minnie Mouse and know Minnie Mouse was in the garage.

In a few days the picture of toy in garage was printed smaller and attached to the bottom of Britt’s visual schedule. Britt did not yet understand to make the picture in her head, but this strategy has served her well for several months now because it supports her visual style of thinking, allowing her to be separated from favorite toys.

Example of Parking Thoughts: Each weekday morning Eli’s grandmother picked him up. On Monday, Wednesday and Friday she brought him to preschool. On Tuesday and Thursday they went to grandma’s house. Each morning at breakfast mom would tell Eli if it was a school day or a grandma’s house day. If Eli thought he was going one place and it turned out he was going the other place he had a meltdown and had trouble the rest of the day.

Eli is a visual thinker. When he thought he was going to grandma’s house and it was a preschool day he had no way to hold his thought – i.e., he had no where to put his visual thought for safe-keeping – until the time he needed to retrieve it. As a visual thinker, this meant he had to hold onto the picture of the activities he had in mind to do at grandma’s house until the next day when he could actually go to grandma’s house. In doing so he was unable to fully engage in today’s activities. Furthermore, everything he did in his today was a mismatch to the picture in his head (activities at grandma’s house). This mismatch precipitated intermittent crying and throwing of objects throughout the day.

This often happens with visual thinkers. When thoughts are pictures you need to keep seeing them in order to not forget them. Often this leads to behavior that doesn’t work well. In this case Eli was not able to engage in any of his school activities and spent time crying and throwing things. The whole time he was at school he talked about being at grandma’s house and what he was going to do at grandma’s house.

Eli had been using a daily visual schedule. Drawing on his familiarity, we used a small dry erase board, labeling it Another Day. I started drawing with a dry erase pen each of the things he talked about. For example, he talked about playing Candy Land, eating goldfish crackers, cheese and grapes and swinging outside at grandma’s house.

Once these things were drawn on the page labeled Another Day this page was placed next to his visual schedule. This allowed Eli to know he could return to his thoughts about what he would do at grandma’s house whenever he wished. He knew where to look. This meant he no longer had to keep the picture in his head. Thus, he was able to engage with the activities on visual school schedule. Periodically, he would go over his schedule, point to the dry erase board and “read” the pictures, reciting aloud what he would do Another Day at grandma’s house. Occasionally he would add a picture item. Thus, Eli learned a system for how to park a visual thought in a way that worked with his visual thinking. This allowed him to engage in the activities at hand because he knew he would not lose his thoughts and plans for grandma’s house.

Conclusion: There are many ramifications of thinking visually. Often, children on the spectrum can benefit when we understand how their thinking works and give them visual strategies compatible with thinking style. Always remember to consider the impact of visual thinking when unproductive behavior emerges.

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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 on May 5, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.

Autism, Accommodation and Differential Expectations

People generally are very pleased with themselves when they have made an accommodation for me. I know this because they proudly announce it! In turn, I have learned to say thank you when people announce their thoughtfulness at making an accommodation for me. I truly am thankful because it allows me a fuller participation in the events going on around me. It also makes me smile because I have been making accommodations for people my whole life and it has never occurred to me to announce it!

The fact is that autistics are required to make numerous accommodations every day they are among other people. This is because the world is not set up in a neurologically friendly way to autistics. We live in a very fast paced world where speed in understanding and responding to people is expected. We also have much information constantly being delivered over numerous electronic devices. We expect everything to happen instantly!

For the most part this isn’t a good match for people with autism because we generally have a “too much” experience of the world due to the way our sensory system takes in information from the world around this. Once that information “arrives” it is then, for many autistics, processed differently. A common result of our difference is referred to as a processing delay. This means it takes more time for us to process and respond. Not only is this is a huge disadvantage in our fast paced world of instant expectation, but one unspoken assumption is that I will accommodate for my differences and act “appropriately,” i.e. act as a neuro majority person acts.

It takes time and energy to accommodate another person regardless if you are the person with autism or the person without autism. Based on years of observation of numerous autistics, myself included, I can see autistics pay a much higher cost for the accommodations they must make as compared to the neuro majority person. Part of the reason is the sheer volume of accommodations an autistic is required to make each day compared to others. The really funny part of this is that autistics rarely are in any way acknowledged for the heavy burden of accommodations they must make just to survive in this world while others are thought to be the people making the accommodations! Furthermore, I am expected to make accommodations for you while you have the option to choose when, if, and how often you will make accommodations for me.

This differential is a result of assigning the measure of normal to the experience of the majority of the people. Even though I make considerably more accommodations for you than you make for me, because your experience of the world is considered the norm and my experience the deviation it is the understanding of the majority that I need you to accommodate me and this is true. However, nobody notices all the accommodating other autistics and I have done all our lives!

Another funny thing about this whole accommodation situation is that when you accommodate me, even if you do not announce it, everybody considers you to be a really good person for making accommodations for an autistic. For you, making accommodations is not only optional, but when you do so you are considered a good person.

For me, making accommodations is not optional. Because your ways are considered the norm I am expected to do whatever I need to fit into this norm. For me, making accommodations for you is not optional. It is expected and therefore, no credit given. In fact, the only time people notice me in regard to accommodations I make for them is when I neglect to make them! When I cannot or do not make accommodations for you something is considered to be wrong with me.

The double standard is that you are known as a good person for the accommodations you make for me while I can only be known as a bad person when I fail at making an accommodation for you. And just like you will not be thought of as a bad person when you fail to make an accommodation for me, I will never be thought of as a good person when I do make accommodations for you – at least this hasn’t yet happened in my life even though I have made considerably more accommodations over the years for neuro majority people than they will likely ever make for me!

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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 Neurology or Psychiatric Symptomatology?

Sometimes autistic neurology – specifically our style of thinking and the way our brain handles information bumps up against what can appear to be psychiatric symptomatology. This has happened to me many times over the years. My style of thinking is visual along with being quite literal and concrete. I understand myself and, in general, thoughts, ideas and concepts by having or creating an object or visual representation of that construct. Here is an example:

“…in my life, I have come to a fuller understanding of the parts of me as represented by actual pastel colored stones. I have the collection in a small box. Each stone holds for me the information about a segment of my history. This is why, as a child, information learned in one setting didn’t automatically transfer to another setting for me, as it seemed to do for others. For example, the “home Judy” might be able to tie shoes and know how to make a sandwich, but the “school Judy” would not be able to access these skills” (Endow, 2009a, pg. 17).

In the field of autism we say individuals are not very good at generalization. We try very hard to help students perform learned skills in a multitude of environments to support generalization. I wonder if we had a way to discover how our student was processing, recording, storing and retrieving information if we might be able to develop a system for them to generalize. Once the system was developed would generalization be able to happen? Nobody knows as it hasn’t yet happened, but it is an interesting question.

In the field of mental health we tend to see Dissociative Identity Disorder when there are distinctly different parts of one person, sometimes the parts unknown to each other. I was actually diagnosed with this back when it was called Multiple Personality Disorder. Today, I believe this historical diagnosis more accurately represents my autistic style of visual thinking in a very literal and concrete way along with the way my neurology processes, records, stores and retrieves information.

“Thus, this first pile of stones was comprised of several pastel-colored bits representing the inside unconnected parts of me –

WHO
 I was in

            different places,

                        much of
the know-how of

                                    the various WHO’s

                                                unrelated to
each other,

                                                            each WHO of Her

                                                                        represented by

                                                                                    a separate
pastel bit of

                                                                                                colored stone”

                                                                                     (Endow, 2009a, pg. 17).

Illustration of Concrete Thinking Impact
Over time, as I grew from a child to a teenager, and then into the various stages of womanhood, I was able to look back over the lifetime of these pastel stones. Each of them had its own bit of Me recorded and encapsulated into an entity of its own. These pastel stones held my history, each era distinct and separate from all the others, with none of the content of the stones overlapping.

Illustration of Information Recording and Storage Impact
No wonder I often felt unconnected to my past, as if I was continually starting my life over! I came to understand that this was a function of the way I recorded and stored the happenings of my life – each bit encapsulated in its own entity, never intertwined with any other events. It often felt to me as if I was lost from myself.

Illustration of Information Retrieval Impact
When the content of these pastel stones became available to me in my thirties, I was finally able to piece together my past into one whole. During my forties I was able to think of myself as one whole person with a past, a present and a future yet to come. Today I have a good sense of my own personhood, being able to line up the story of each stone chronologically to tell my history and also to imagine forward into the future. I do this by thinking about what the story of the next stone will show. I have to be able to visualize a new pastel stone inside me before I can plan something into the future, like an upcoming vacation, for example (Endow, 2010).

I think it is important to start discussing the issue of when characteristics of autism in general and psychiatric symptoms in specific may be a reflection of autistic neurology – part and parcel of how one thinks and how one processes, records, stores and retrieves information.

One reason it becomes crucial in teasing out whether we are looking at autistic neurology or psychiatric symptomatology is because autistic neurology need not be fixed. Instead, we all simply need to understand how it works for specific individuals and then based on individual self-determination we can proceed. For example, in my life, I sometimes explain how I store and retrieve information when I need extra time to answer a question and sometimes I choose not to explain.

On the other hand, when something is reflective of psychiatric symptomatology, then the supports and treatments available to general public need to be available to the autistic too. It is not appropriate to attribute psychiatric symptomatology to the autism. It is appropriate, however, to treat psychiatric symptomatology of an autistic person through the lens of autism. This is another subject perhaps for another blog…or book, and for another time.

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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 on March 6, 2016.
To leave a comment at the end of this blog on the Ollibean site click here.