Category Archives: Social Considerations

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

Autism and Public Perception

Today we have added something to our public perception of autism. Historically that perception has been one of an isolated small child rocking or head banging, oblivious to the rest of the world. Even though that perception is wrong, it is the public perception. There is an addition to that perception in the past few years. It seems society has added an adult image of autism. It is another false image, but never-the-less, quickly becoming an accepted public image of what it means to be an adult autistic. Unfortunately for all of society, that image is of a shooter. Not any shooter, but a mass shooter.

With each mass shooting tragedy, an interesting phenomenon occurs. If the shooter is a person of color we label the event as an act of terrorism. If the shooter is white we pull out the mental health or autism angle.

Most of the mass shootings in the USA have been by young adult white males. Early on in the reporting, when the nation is glued to the news story, autism is questioned. It seems to be the new favorite buzzword of news reporter’s sense making of mass shootings by young adult white males.

The fact of the matter is that of the almost 50 mass shootings in the USA in recent times almost none of the shooters were autistic. Even so, the public perception that shooters are autistic has been developed. The way this happens is that early on, when we are all paying attention to the news on the newest mass shooting tragedy, the autism question is raised. Then, several days later, when most of us are no longer closely following the story, the fact that the shooter was not autistic surfaces.

Because autism was connected early on in the reporting of shootings, it sticks in the minds of the general public. Even though it is not true it has now become pseudo public knowledge and therefore a generally held societal belief that mass shooters are autistic.

I realized the public image of adult autistics as mass shooters has taken hold because of the following things that have happened recently in my life:

  • In two separate school consultations in the past 6 months school staff have expressed concern that their particular student would become a shooter. One student was a fourth grader who had a behavior of dropping to the floor while screaming and crying. The other student was a seventh grader who pushed his books off his desk and yelled, “no” in response to becoming overwhelmed. I have been an autism consultant in schools for many years. These behaviors are typical results of disregulation in students with autism. When sensory diets and visual supports are put in place the behavior typically subsides. Never before in all the years I have consulted have school staff voiced concern that students with these sorts of behaviors might become a mass shooter.
  • I was told by an acquaintance that I could become the next mass shooter because I am autistic. This person went on to tell me that everybody knows autistic people do not have empathy and therefore have no feelings for others. I was told that it is impossible for me (or any autistic) to be a caring or compassionate person and therefore I could be the next mass shooter. This belief is wrong. The facts are autistics do have empathy and do have all the same feelings other people have. Most of the time autistics experience feelings so intensely it causes an emotional shut down. Unfortunately, when John Q. Public holds an erroneous image of adult autistics as shooters, all the facts in the world do not change his belief that he now considers factual.
  • An autistic acquaintance reported her eight-year-old autistic son woke her up in the wee hours of the morning very upset and crying. He expressed fear that he would shoot people when he grew up because he was autistic.
  • A Facebook hate page popped up called Families Against Autistic Shooters. Petitions were signed more than once in attempts to get Facebook to remove the page. Once it was removed it took but a few hours before it was again up and running. Here is a link to a story about this https://www.yahoo.com/health/internet-rallies-to-remove-facebook-page-linking-013122755.html

It seems our society has adopted yet another false belief around autism. I am quite concerned over how this might play out. We are living in a time when we are in need of putting together increasing numbers of transition programs that include housing for our young adults needing that sort of support. What will this mean in terms of employment and housing opportunities for our young adults on the spectrum?

Even though this has untold impact on autistic people themselves, it is a larger societal issue. As there become more and more supposed reasons to shove autistic people out of their rightful place in society please know that this sort of set up, if allowed to continue, will short change all of society. Autistics may need supports to live in this world AND autistics have contributed mightily to our modern society. We would not be using many modern inventions, electronics, medical advances, and technology if it were not for the contribution of autistic people over history. Society cannot afford to squelch the contributions of autistics alive today or of those who will be born in the future. To do so would be like cutting off our nose to spite our face.

Therefore, I encourage all people who fashion themselves to reasonably intelligent not to swallow hook, line and sinker, the assumption that shooters are autistic. It is false and it will only lead to you developing an unfounded fear. Whenever fear of an already marginalized group occurs history has shown that the results are horrific. Please do not be part of society going there. You can inform yourself.

If you want to read about the history so as not to repeat it check out Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

If you want to get a true picture of what autistic people are like and you have an aversion to finding out from actually autistic people, please read Uniquely Human: A Different Way of Seeing Autism by Barry Prizant.

Both books were released late summer of this year.


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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 12, 2015
To leave a comment at the end of this blog on the Ollibean site click here.