Category Archives: Autistic “Behavior”

Autism, Perseveration and Holding onto Thoughts

Like many autistics, all my life I have thought visually. My thinking is comprised of pictures, colors, shapes along with their sound and movement. Given that experience, I have had to learn how to hold onto new thoughts because it doesn’t just happen automatically. This is especially true if I see a novel thought while in a slightly (or more than slightly) elevated emotional state. It doesn’t matter if the emotion is negative or positive. Here is an example:

When I am looking forward to an event such as going on a trolley for the narrated Fall Color Tour, it generates a slightly elevated positive emotional state. I want to remember to stop at the grocery store on the way home to purchase an ingredient for a dish I am planning to make for dinner. If I have no way of storing or retrieving that information I will need to hold onto that picture until it happens.

As a child, the way I would hold onto a picture – a thought that was important that I didn’t want to forget – would be to talk about it over and over until the event happened. In the above example I might repeatedly ask, “Will we stop at the grocery store on the way home?” Even though the question would be answered very patiently several times I would persist in asking it. The function of the question in this case was not to get the answer, but instead to hold the picture in place – front and center in my head – so that I would not forget it. This is because a visual thought, if not stored and therefore retrievable, is literally, out of sight, out of mind never again to be found.

Today in my practice I work with many autistics that repeat things over and over. It is often referred to as perseveration. Sometimes the perseveration is happening because the individual is thinking about something he does not want to forget and hasn’t yet figured out another way to hold onto his visual thought.

Here are some ideas that have been helpful to me to me and to others I have worked with over the years:

  • Visually construct a garage or a parking lot in your head. Consciously think of putting the picture thought in the garage or parking lot. Once the thought has been visually parked it will be there when you go looking for it at a later time.Many times when I first start working with someone to use this idea I will have them actually draw their garage or parking lot on a piece of paper and draw in the visual thought they want to park. Once the thought is parked they can go onto to do something other than perseverating on that particular thought picture, knowing they will be able to find that thought later even though they do not keep it front and center in their brain by repeatedly talking about it. Typically, after a few times of using the drawing and with encouragement to put the drawing in their head, individuals drop the paper and pencil garage or parking lot once they indeed have the visual in their head.
  • Often, a visual thought can be jotted down or drawn so as not to lose it. We all do this when we make our grocery list or jot a note to pick up milk on the way home. I needed direct instruction, many reminders and lots of practice doing this before it became automatic for me to even think of using this strategy. I find autistic individuals I work with often need direct instruction and repetitious practice before the seemingly simple idea of writing it down becomes a viable everyday strategy.
  • Another strategy that works well is to visually pull up a future scene of when you need to remember your current thought. Directly create that picture thought of the future scene when you will need to have the picture reminder pop up.Using the above example I would think of driving home from the Fall Color Tour around 2:30 along with onions at the grocery store. My picture would be of me in the car with my watch at 2:30. On my watch I put the words “on my way home” because I know my brain may not co-operate if the time is different than exactly 2:30 when I am driving home.Often, when there is not the exact visual brain match to reality, my brain will boot the picture out which causes me to lose the reminder. Thus, I have learned to outsmart this.When the picture of me in the car with my watch is in place I add the picture of a building with the words “Grocery Store” and an open door where I put a picture of onions just inside the door.

    Again, I outsmart my exacting visual brain by using a generic box building with the words “Grocery Store” rather than a specific grocery store. I know that I have a few possibilities of grocery stores to stop at on the way home and want to make sure I get to decide in the moment based on other needs. For example, I only want to make one stop so will stop when I need to use the bathroom and pick up the onions at this same stop regardless of which grocery store is at the stop.

Hopefully, if you are autistic and have difficulty holding onto thoughts these ideas, might be useful for you like they have been for many others. If you know an autistic person who is prone to get stuck and perseverate please know that if the reason for the behavior labeled perseveration is for them to hold onto a visual thought, these ideas may be helpful alternatives.

It has been life changing for me to learn to work with my autistic brain rather than trying so hard to copy and display the behaviors of typical people. The copy mode is draining and even when I do copy it often doesn’t fit in well, sometimes appearing a bit robotic. It is unfortunate that most of the folks who are teachers and helpers of autistics are at a disadvantage when it comes to supporting and working with autistic thinking only because they do not understand how the autistic brain functions. I have learned that it is so much easier to respect my neurology and work with it than it is to learn to copy the behaviors of neuromajority folks. I hope more information for autistics on how to work with their neurology becomes available.

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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 October 18, 2015
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Autism and Changing Classroom Strategies

The field of autism is very new – not even 100 years old yet! This means we are constantly learning new things. It also means that those of us in the field of autism will likely need to change the way we deliver help to those who seek it and change the way we teach our students. It has happened to me and to most of my colleagues in the field.

We now know that what works for most children to learn does not always work for autistic children. In fact, it can be detrimental to their learning. Here are two examples:

  • Requiring children to look at you when you are speaking to them
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    For most children this will allow them to better attend to what you are saying because the act of looking while listening often gives you their undivided attention.

    For many autistic children looking at people speaking to them is problematic. Many autistic people will tell you eye contact is painful. Even when it is not downright painful, eye contact can be a problem for many autistics in that the information picked up is too intense, which can then trigger shut down.

    Whether painful or too intense, eye contact with an adult speaking to an autistic child will not insure that child’s undivided attention. In fact, demanding eye contact of an autistic will most likely be counter-productive to your goal of having them take in the information you are saying to them.

  • Requiring children to stop moving about when you are speaking to them or when you want them to do seat work at school
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    Most children are able to better concentrate on the task at hand if they have still bodies.

    For autistic children the opposite can be true for a variety of reasons. For some, processing information – this includes thinking – can only happen when physical movement of the body occurs. Thinking is neurological movement of ideas and facts in the brain. Autistic wiring means that sometimes it takes physical body movement to spur on the neurological thinking movement necessary to allow academic completion of tasks.

    Many autistic children employ a repetitive movement such as flapping of the hands. We now know that hand-flapping can be a tool to keep the sensory system of autistics better regulated. Many report the calming effects actually allow them to be part of the world around them. Others report that hand-flapping allows excess emotion to be drained out of the body which avoids shut down from overwhelming physical sensations that intense emotions can bring to an autistic body.

    Whether regulating, calming or avoiding shutdown, hand-flapping or another repetitive movement (sometimes called stims) for many autistic students, is their ticket to be able to concentrate on the task at hand. Having a quiet body or quiet hands, while helpful for typical students, is often counterproductive for autistics when it comes to hearing instruction or concentrating on academic tasks during the school day.

Maya Angelou said that when we know better we do better. I think this is an important concept to apply to the changing field of autism. As we become better informed by the children who grew into adults and are now well able to communicate their perspectives from living in a body headed up by autistic neurology, we can throw out some of those ideas and practices we once thought were helpful.

Often times I see people in the field of autism hang onto the way they always thought or the way they always did things. Change is difficult. Sometimes people get into dichotomous right/wrong arguments over things such as eye contact and hand-flapping.

I get this. For me, if I learn something new that changes what I do to make things better for children today I also think, “What might have happened for Tellis or Maddie or Carlos or Jack if only I had known?” It is hard to entertain having been wrong, especially when you know it may have negatively affected the lives of children. I think this is why some people fight so hard to prove their old thinking and old ways are right and the new ideas or new information is wrong. And yet, it often isn’t a matter of right or wrong, but instead, a matter of becoming better informed over time.

I would like to encourage all of us who feel badly or are embarrassed about what we believed about autism or about the strategies we may have tried in the past to remember to be kind to ourselves. Most of us have done the best we could with the autism information we knew at the time. Remember, relatively speaking, the field of autism is new, being less than 100 years old. Thus, we can expect to shift our thinking and change our practice strategies based on new information.

As long as we continue to update our information along with seeking out and learning from the experts – those who live the autistic life – we can know that as we learn, discover and grow we can update our teaching strategies, improve our service delivery and make better progress on behalf of those we serve who live with autism. As teachers and practitioners we will become better and better interfacing with, helping and teaching our autistic students. Together, with autistics informing us as we go, the world can become a better place for us all.

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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 August 8, 2015
To comment on this blog click here.