Tag Archives: autistic experience

Autistic Neurology of Visual Thinking is NOT Intentional Behavior

Autistic people are often visual thinkers. It is not something we decide, but rather the way our brain handles information. We do not know when we are little that most other people think with words rather than with colors and pictures. This makes it difficult in school as delivery of information quickly becomes language based as pictures drop away after the first few years.

This dramatic change in materials in the United States occurs at the third grade level when text based instruction becomes predominant. For me, it was hard to think about or understand ideas that were not concrete ideas.  Basically, if my brain could not translate the words I heard into a concrete picture in a few seconds, as a young child, I would not be able to pick up the meaning of the words being spoken. Even though I did not understand the meaning I was able to repeat the words. For example, when prompted I could repeat the teacher’s instruction to use quiet voices even though I had no idea what the words meant because no picture popped up in my head to equal those words.

      • Is your student a visual thinker?
      • Do you use concrete language along with pictures as needed?

Non-Compliance or Comprehension Constraint?
When autistics are able to recite your instructions or repeat an admonition and then do not follow the instruction or admonition do not assume willful non-compliance. Instead, check for comprehension. If the autistic is a visual thinker ask him what the rule or instructions look like , to draw it, or to show you. If a visual thinker cannot do this, he likely does not comprehend the words you are speaking even though he may be able to repeat them quite accurately. And even when he replies, “yes” to your inquiry of whether he understands please check for comprehension because we learn early on that “yes” is the correct and expected answer to that particular question!

Research Findings
Numerous research findings over the years have shown that autistic children have been shown to basically be normal for age in word decoding, but lower than age expectation in reading comprehension (Minshew, et. al. (1994), Myles, et. al. (2002), Nation, et. al, (2006), Newman, et. al. (2007), Asberg, et. al. (2008), Asberg, et. al. (2010).

  • When your student’s behavior has the appearance of willful noncompliance do you stop to ascertain comprehension before ascribing meaning to the behavior?
  • How will you evaluate your student’s comprehension or lack of comprehension?

Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement,
and Living a Self-Determined Life Based on Autistic Neurology, pgs.46-47.

Note: The author is a mental health therapist and is also autistic. She iintentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language

BOOKS BY JUDY ENDOW

Endow, J. (2021). Executive Function Assessment. McFarland, WI: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic AdultShawnee 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. (2009b).  Paper Words: Discovering and Living With My Autism. 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.

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Impacts of Autistic Thinking Style

I think in colors. My thinking colors have sound and movement. When I hear spoken words my neurology automatically goes for the match. When I was a girl, I heard the saying, “I got the world by the tail.” Immediately, the matching pictures of tail started popping up in my head. It’s like having a personal version of Google Images.

The initial picture search produced a variety of tails of animals. Then, there came the images of the ground mist I saw each morning when I went outdoors after breakfast. I assigned the world tail words I heard to this literal tail meaning that enabled me to name the pictures that had popped up in my head.

Specifically, I assigned this new tail meaning to the interaction of the sunlight and misty water particles I could see rising up from the earth’s surface whenever I was outside. For most of my life, I thought this literally was the earth’s tail.

Furthermore, I thought that people were somehow able physically to grab onto this tail and when they did so they indeed had the world by the tail! I had often tried to touch these sparkles, but now I had a new mission. I wanted to actually catch this tail so I too might have the world by its tail! I am glad this was the 1950’s because children played outdoors many hours. I was not interrupted in my efforts of trying to catch the earth tails.

Today, this would be called “a behavior” and more specifically could be labeled “stimming.” Unfortunately, today some would try to intervene and stop me from engaging in this behavior. Back then, it was just thought to be my way of playing. I used this environmental phenomenon of ground mist interacting with the sun sparkles to make sense of the progression of time across the day. It allowed me to be able to predict what would happen when (lunch, naptime, setting the table for dinner, etc.). I am glad nobody took my mechanism of sense-making away from me!

I was often labeled stubborn and noncompliant based on other’s interpretation of my behavior.  In reality, I was doing the best I could in the moment to participate and do what was asked of me by the adults.

Because autistics have different operating systems, we are misunderstood in many ways. Our operating system visits different, and yet often intense, experiences of aspects of the world that others never seem to notice at all! I would like to end with a poem illustrating the huge impact mismatched colors have on me.

            Warring Colors

Colors are something her eyes
can readily see
and when colors match
they tend to give back
a comfort to her eyes.

But when colors don’t match
she can get distracted
and sometimes finds it harder to function
when her attention needs to be given
over to inside-her-skin physical senses.

If world-people could see
what happens inside to her body
when colors are clashing outside of her skin
in the world all around her

this is what they’d observe
Her eyes start hurting
as if they are burning.
Sometimes tears form
and leak onto her face.

Her insides
become disjointed
with inside-her-skin molecules
of her very being
trying to move away from each other –

like sisters and brothers
in a family feud –
kin not getting along,
choosing sides
and warring with one another.

This causes a physical aching.
Her muscles get sore and tired.
Over the years she has learned
that for her

it is not a very wise choice
to remain a long time inside of a room
where colors don’t match
together (Endow, 2006, pp. 24-25).

Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology, pgs.40-42.

Note: The author is autistic, intentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language.

BOOKS BY JUDY ENDOW

Endow, J. (2021). Executive Function Assessment. McFarland, WI: 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 AdultShawnee 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 DisordersShawnee 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.

Christmas, Autism and Teaching Kindness

During the holiday season people are sometimes rushed and frazzled due to the extra activities and expectations of the season. Thus, it is a particularly good time to talk about kindness. Many individuals with autism are literal and concrete thinkers, which can make teaching an abstract concept such as kindness a little tricky. Here are some ways to work with an autistic neurology when teaching the concept of kindness:

Identify Acts of Kindness

Even though kindness is an abstract concept we can start teaching kindness by noticing aloud whenever we see an act of kindness by another. This can include anything from holding a door to returning a stray cart in a store parking lot. We can comment on the behavior and identify it as kind.

Model Acts of Kindness

One way to model kind behavior is to treat others with respect. We can be polite to those waiting on us in stores and restaurants. We can say thank you whenever we appreciate the thoughtfulness of others. Be sure to identify these acts as being kind.

We can even model what to do when we recognize our behavior is less than kind by calling a “do over.” Whenever I find myself acting unkind I call a do over. I then simply go back and do it over, pulling up the kinder behavior I wished I would have exhibited in the first place.

Example: I one time said, “don’t be such a slow poke” when my child was having a hard time choosing between breakfast cereals in the grocery store. I immediately called a do over, apologizing and saying my words were unkind. I thought for a moment and then said he could carry both boxes of cereal, take his time choosing and after deciding, return the rejected box to the shelf.

I like modeling do overs because it is a quick way to repair a less than kind situation – something we all find ourselves in from time to time. This normalizes the fact that we are not always as kind as we would like to be along with giving the remedy of what to do when we find ourselves in the aftermath of being unkind.

Use a Visual To Report Observed Kind Acts

Once the individual has an understanding of kind acts I like to make a visual to support us in looking for and identifying kind acts we see others doing. I have used a variety of visual systems, depending on the interests and abilities of the individual. Here are some things i have implemented:

  • Capture a Kindness a Day: Ben loved taking photos with his phone so his assignment was to snap photos of observed kindnesses. At the following appointment we looked at the photos together while Ben told me the kindness depicted in each one.
  • Count up the Kindnesses: Mari put a handful of pennies into her left pocket each morning. Each time she saw an act of kindness she moved one penny from her left pocket to her right pocket. At the end of the day she recorded the number of pennies in her right pocket.
  • Recall a Kindness: Jose and his mom talked about kindness at dinner each night. They each told the other about one kind act they had observed during the day. While mom cleared the table Jose recorded the kind acts of the day on the Recalling Kindness log.

Use a System To Record Kind Acts Engaged In

Once kindness has been identified and able to be seen in others it is time to encourage individuals to engage in their own kind acts. Remember, with autistic neurology, in addition to supporting a concrete, visual and literal style of thinking the neurology often looks for the system. This means we can support this strength by developing a system to highlight kind behavior. Some systematic successes include:

  • The Christmas Kindness Can: A coffee can was covered in bright Christmas paper and labeled the Kindness Can. Slips of paper with prompts of kind acts were placed inside the can. Each morning one slip of paper was pulled out and an opportunity to engage in that kindness was watched for and implemented during the day. This idea can be used for one person, a family, a group or a classroom. One alternative is to create a story about a person engaged in the act of kindness described on the slip of paper drawn. Another alternative is to tell about a time you employed the kindness described on your slip of paper.
  • The Kindness Calendar: Using a monthly calendar, write a specific kind act on each square. The idea is to engage in the act of kindness written on the day’s calendar square.
  • The Kindness Cup: An unpopped popcorn kernel was taken from the jar and put into the candy cane decorated coffee cup after each kind act. This was a classroom project with students and staff contributing. When the coffee mug was full of popcorn kernels the class had a popcorn and candy cane treat.

Reminder

Remember, we are highlighting kindness. It is important that the kind act or deed we engage in, when directed toward another person, is perceived as kind by that person. If in doubt you can ask the person first. This is because a helpful act of kindness is only helpful and kind if wanted or welcome by the other person.

Conclusion
The abstract concept of kindness can be taught to anyone. Start by identifying and modeling acts of kindness. When it comes to a person with autism neurology, it is often helpful to use visuals and to employ a system for engaging in or in observing acts of kindness.

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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 Dec. 9, 2016
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Social Participation and the Autistic Sensory System

Every time autistic people interface with the world outside their skin they bring along their sensory system that is often unstable and foists many unexpected experiences upon them. The solutions we employ to deal with the many sensory assaults we experience in social envi- ronments are coded by others as “behaviors.” This is because other people cannot see the inside workings of our sensory system. They can only see the outward behaviors we display as we respond to our inner experience. The following is about one experience of eating at a restaurant, but it is easy to understand that most social participation for an autistic means managing a sensory system that is often unreliable.

Here is an example from my own autistic life:

Lots of people like to eat out. I do, too. Because of my sensory sensitivities, I have learned to reduce certain input to the best of my ability in restaurants so as to better enjoy the experience.

It is impossible to control for all sensory sensitivities at a restaurant. However, I have learned to scan the place and figure out what I can do to make it the best experience possible. A recent gathering was wonderful because the restaurant was spacious with plenty of room between tables, very few diners, soft lighting, soft music and chairs with arms. The perfect sort of place for me!

When the atmosphere isn’t so perfect, I ask for a booth if the place has booths. A booth ensures that nobody will walk behind me and surprise me, causing a startle reaction. A tall-backed booth greatly cuts down the noise. If a booth is not available, I ask to be seated along the perimeter of the dining room.

If there are blinking lights, TVs or lots of movement, I know I will get dizzy. Chairs with arms are great to help me stay anchored. Even if I don’t get dizzy, I often have trouble feeling where my body is located in crowded noisy places. If I don’t have a chair with arms, I will find something to lean at least one side of me against – wedge in with the table or, if in a booth, lean against a wall or a willing friend.

There usually isn’t much a person can modify about lights in a restaurant, but I try to avoid downlights if at all possible. Sitting on the perimeter of the dining room helps reduce the noise input. There is not the surround sound with a wall behind you!

Friends will often suggest I use my earplugs in a restaurant. I realize they have never tried wearing earplugs while eating! It magnifies the noise of your chewing so much that it is nearly impossible to eat. I control for whatever I can in a given environment and then do my best to cope with the rest. Sometimes I do better than other times.

One time I was on a trip with friends. Each morning we ate breakfast in the hotel dining room before setting out for the day. One particular morning, I couldn’t make up my mind about what to order. The waitress came back several times to see if I was ready to order. My thoughts were “sticky,” meaning I would get part way through a thought of what to order and then lose the thought, only to have it butt in on the next thought that involved the next menu item. It was frustrating. I know it made me look like I needed lots more help than I actually did.

When the waitress returned once again and I still did not have my order ready, I wanted her to understand that I wasn’t trying to be difficult and blurted out as way of explana- tion, “I am really not as stupid as I look!”

The waitress acted all flustered. I felt bad because I had no negative intent towards her – just wanted to offer an explanation of sorts about my situation. In retrospect, I should have left well enough alone, but wanting to smooth over the situation when the waitress was apologizing and saying she didn’t mean to rush me, I very supportively replied, “Oh, don’t worry about it. I know that you are probably not as smart as you look either.”

I tell this story so you can know our good intentions are not always conveyed by the words that come out of our mouths. This is especially true when we are on sensory overload or having trouble with movement in our thoughts or in our bodies. Please remember – we are doing the best that we can, given the neurology of our autism.

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

Note: The author is autistic, intentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language.

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 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.