Tag Archives: sensory

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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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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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.

Teaching Autistic People

Just like people of all ages can learn, so is it that autistic people of all ages can learn. It is an utterly sad state of affairs that this even needs to be said, but unfortunately, it needs to be said. Too often I see autistic children being babysat rather than being taught at school. When I ask about academic curriculum being used, I am told, “Oh, he has autism” as if this is an answer to my question.

In my work as an autism consultant I am called on to go to public schools to see autistic students who are thought to be failing what the system has to offer. Most of the time students I see have behaviors that don’t work well in a school setting. For all students I am called in on, I use the stabilization techniques below, which are also the first steps I use when teaching autistic students if the student is not stabilized. This is why I can say that even when your student has autism, including when behaviors are present, he can learn just like any other student can learn. Autistic people are just as deserving of an education as other human beings. That being said, specific supports must be in place to insure access to that education. After all, nobody can do math (or any subject) when they are literally bouncing off the wall (a sign of extreme sensory disregulation).

Stabilization

  1. Internal Regulation (sensory diet)
    Autistics have a neurology that means many systems (sensory, emotions, movement) in their body do not automatically regulate. This means conscious attention and effort must be brought to regulate whatever systems need regulation. For most autistics I work with, the sensory system is so disregulated that it masks emotional and movement disregulation.

  2. External Regulation (interactive visual schedule)
    It really helps to know what is going to happen when – the schedule of events.

    Most students have a neurology that can pick up this sort of information without being instructed. They can sort out the spoken words of the teacher. Students with autism typically have weak auditory processing abilities. Their neurology may not allow them to take in verbal words, sort out which words are relevant and process those words to understand what will happen next. This means every transition from one activity to another can hit them as a huge surprise, causing further disregulation.

    When typical students are distracted and miss the teacher’s verbal instruction of “get out your math books now” they usually become aware that the other students are getting math books out of their desk so they know they are meant to get out their math books too. Autistic students do not pick up these external cues as readily.

    Even when they see other students getting out math books, autistic students do not necessarily take that to mean they should also get out their math book. This has nothing to do with cognitive ability. It has to do with weak connections between areas of the brain – several areas of the brain working together to synthesize environmental, social, emotional and other kinds of information to inform them “I need to get out my math book.”

    Visual schedules support this issue for most autistic students. It is often helpful for the schedule to be interactive – meaning the student needs to do something with the schedule before each transition.

  3. Relationship
    Most students I have been called on to consult for have experienced much angst along the way. They know they are not like other kids. They may or may not know they have autism. One thing I find is that students who are able to communicate are very aware they are different from other kids and they have made up a narrative to explain their differences to themselves. I have been honored by a number of students sharing these stories about why they are different. I have yet to hear a positive story. They are typically stories about major character flaws, sometimes character traits they have heard others ascribe to them such as lazy, stubborn, willful, violent, refuses to share, refuses to co-operate, etc.

    As I begin working with new students I typically use a simple interactive schedule to show them “work” and “sensory break.” I ensure they are successful at following this schedule even if it means we work for a few seconds and engage in sensory regulating activities for a much longer time. I am visually instructing how schedules work while getting the student’s sensory system regulated and doing that in the context of forming a positive relationship.Most students I see have not experienced a lot of positive relationships. They have learned not to trust others around them. I am giving them an exact visual way our time works. They can count on it, become part of it and will always succeed. Over time strong relationships develop. Once a relationship is solid, we know what sensory activities are needed (along with how long and how often) and the student has mastered his interactive visual schedule I know he is now stabilized. Once stabilized we are ready for more formalized instruction.

Instruction

  1. Identify and Teach Needed Skills
    Besides academic instruction, students with autism often have particular skills for which they need to receive direct instruction. This can be anything from how to open a milk carton to waiting for the teacher to call on you when your hand is raised before contributing. It is helpful to identify a few of the skills that are deal breakers to your student getting along in the classroom. Learning and using these skills can be intertwined with academic content and other parts of the day.

  2. Ensure Success by Decreasing Task Demands
    Differentiated Instruction is one way to reduce educational task demands to match the needs of an individual student while ensuring them opportunity to learn along with their peers even though he may not have the same personal resources to bring to the task. My favorite person when it comes to differentiating instruction is Paula Kluth. Every student can do something. If you need ideas on how to use general education curriculum for students with autism who you think cannot do general education curriculum please look up Paula’s work. (paulakluth.com)

    My favorite people when it comes to a discussion about decreasing task demands are Ruth Aspy and Barry Grossman. (www.texasautism.com) An example of decreasing task demands for a student who struggles with handwriting is to take handwriting off the table in all subjects except Handwriting Instruction. Perhaps a scribe is used to do the actual handwriting task or an app such as Dictation Dragon, which means he can now do creative writing through dictation. If the student is an efficient typist perhaps that is the way to go, which means the student can now do social studies assignment that involves answering questions with a paragraph.

  3. Reinforcement
    There is significant brain research that shows students with autism do not benefit from the same kind of social reinforcement that typical students do. For typical students, in general, the more social opportunities you can add into instruction and use for reinforcement, the more learning that takes place.

    For students with autism, social reinforcement and adding social aspects to learning detract rather than enhance learning. Tangible reinforcement tied to learning has been shown to work better than social reinforcement. In fact, it has been the ticket to learning for many autistic students.

    NOTE: I realize ABA therapy has had a history of using reinforcement in a punitive manner tied to repetitious drilling, often quite disrespectfully. This makes punishment, demeaning drilling and disrespect wrong. It does not make reinforcement wrong. All human beings benefit from positive reinforcement.

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BOOKS AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 June 2016. Add a comment here.

 

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 AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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.