Category Archives: Autistic Neurology

A Snapshot of Autistic Neurology ~ Part 1: Personal Background Information

This is the first part of a five-part blog series with this outline

Part One: Personal Background Information (Release Date: 3-16-22)
Part Two: Information Storage – Bridge Pieces (Release Date: 3-30-22)
Part Three: Information Processing – The Gaps (Release Date: 4-13-22)
Part Four: Information Retrieval – Canoe Transportation (Release Date: 4-27-22)
Part Five: Conclusion (Release Date: 5-11-22)

As a teen I lived some years in a state institution. I hadn’t yet been diagnosed with autism. I had never even heard the term. And yet, I wrote extensively, explaining how my insides looked to me. It was explained to me that I had had a nervous breakdown. Therefore, it made sense to write down the information I could about my internal workings that I could see with my mind’s eye. I suspected this information, though I didn’t understand it, would be helpful to the doctor in figuring out why nerves had broken down and thus he could get to work fixing them. It seemed a logical way to my literal mind to go about remedying a nervous breakdown!

Now, several decades later, I am near retirement. I have had a full and interesting life. Along the way I have been diagnosed with autism. Professionally, I am a clinical social worker. For many years my work has been concentrated on all things autism. Today I work as a mental health clinician a few days a week and on other days work as an autism consultant to school districts and agencies. I have authored several books, written many articles and blogs, and do public speaking in my country and other countries on a variety of autism related topics.

It is interesting to me how the writings I did when a teenager, even though I did not understand them at the time, accurately explain the inner workings of my autistic neurology. Today, I have knowledge and experience in the field of autism and can actually understand what I wrote back then. The following three parts of this blog series are one example each of storing, processing and retrieving information and come from my book Paper Words: Discovering and Living With My Autism (Endow, 2009). As a teen I could see this internal information and thought it vitally important for my doctor to know, imagining it would allow him to do his work of mending my nervous breakdown. Ultimately, the doctor was polite and caring about my written words, held them in his hand while he spoke with me for a few minutes and then returned them to me, never having read them. Part 2, 3 and 4 of this blog series are those words.

Selection from Autistically Thriving: Reading Comprehension, ConversationalEngagement,
and Living a Self-Determined Life Based on Autistic Neurology, pg. 105.

The first photo is an acrylic painting I did that became a cover photo for my book Painted Words: Aspects of Autism Translated (Endow, 2013). The second photo is an afghan
I crocheted to match the painting some years later.
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Note: The author is a mental health therapist and is also autistic. She 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. (2009b).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009a).  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.

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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Dissociative Identity Disorder or Autistic Style of Thinking?

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, 2009b, p. 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 taking in, processing, storing and retrieving information if we might then be able to develop a system for them to be able 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 in Dissociative Identity Disorder distinctly different parts of one person, sometimes the parts seemingly 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 takes in, processes, 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, 2009b, p.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 as 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 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 processed 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 thing about what story 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.

Moving Forward
I think it is important to start discussion 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 takes in, processes, stores and relieves information. Back then, it was diagnosed as Multiple Personality Disorder, known today as Dissociative Identity Disorder. This diagnosis was not accurate nor was it helpful.

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 just need to explain how I store and retrieve information when I need extra time to answer a question. Other times I simple say, “Please give me a minute.”

On the other hand, when something is reflective of psychiatric symptomatology, then the supports and treatments available to the general public need to be available to the autistic too. It is not appropriate to attribute psychiatric symptomatology to autism. It is appropriate, however, to treat psychiatric symptomatology of an autistic person through the lens of autism.

Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology, pgs.43-45.

If you are a clinician and interested in learning more about therapy with the autistic client please join me along with two of my colleagues in an online course.

CLICK HERE for additional information about  Mental Health Therapy with the Autistic Client. 

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. (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. (2009b).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009a).  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.

 

Autistic Processing of Social Information

My autistic neurology means that I am not good at picking up typical social cues, understanding complex social situations, automatically picking up meanings of idioms, or understanding the hidden curriculum that most others automatically pick up (Endow 2012). This means I often look naïve and gullible. The fact is I AM naïve and gullible when I try to use the social constructs of neuromajority folks to navigate the world around me.

When I was younger and deemed “in need of help” that “help” largely involved others trying to teach me to think and act as if I had a typically wired brain. I was never very good at it because no matter how many therapeutic social skills situations I availed myself of, because they were taught as if all participants had a neurotypical brain and my brain was not neurotypical, I mostly failed their learning agenda for me. My brain just plain works differently.

Here is an example: I rarely remember the same details about other people that most folks do. I remember the visual perception that came to me during an interaction, whether or not I was personally a part of that interaction. I pick up much information through seeing the sounds and movements of color people generate along with changes in the air space surrounding them as they speak and go about their business.

When I match the colors of others I can carry on a conversation. When our colors don’t match, the conversation usually doesn’t go well. I did not realize this way of perceiving and understanding the essence of people was not shared by others until recent years (Endow, 2013).

All through my life when others have tried to help me it has been minimally helpful to me. They would most often try to get me to understand the world in the way they understand the world. It was helpful information to know how others were thinking because it explained their behavior. Even so, learning how typical people think does not help me to then be able to think in their way.

Now that you have read the above italicized example of one way I think visually by incorporating the sound and movement of colors people generate do you understand it? Probably so. And now that you understand how I think can you stop thinking the way you think and start thinking the way I think? Probably not!

The way we think is important because it is how we make decisions. It is part of everyday life. In my work life I might avoid business interactions with someone because they have ugly colors with sticky tentacles moving sneakily toward me. A typical person, who’s thinking is language-based, may understand that this potential business partner is devious and less than ethical in his practices. In essence, we both understood the same thing, but I had no way to explain it unless I translated my visual thinking into words. Visual is my native language; it is how I interface with the world around me and how I innately understand people.

Just like it would not be helpful for you to adopt my ways which are foreign to you, please understand that it is not helpful for me to always adopt your foreign ways when making decisions about people. We think differently and that is okay with me. I look forward to the day that my way of thinking is okay with the rest of the world.

In the meantime, if you are a parent, teacher or therapist of an autistic person, perhaps you might find it useful to ponder these questions:

    • Do you know how this autistic person remembers people?
    • Do you know what is important to this autistic person about other people?
    • Do you understand how this autistic person decides who to interact with and who not to interact with?
    • Do you honor this, even if you may not understand it?

Many autistic individuals will not be able to explain to you how they think because it is not word based and thus they have no way to explain it. You do not necessarily need to understand how an autistic person thinks in order to honor it.

Selection from Autistically Thriving: Reading 

Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology, pgs.39-40.

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.

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurol

BOOKS BY JUDY ENDOWEndow, 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 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.

Executive Function Assessment

During the past several years I have been working with both teachers and clinicians to see and support executive function challenges in their autistic students and clients. In the process, the Executive Function Assessment was born. Recently, It has been published in downloadable PDF format. Here is the information and the table of contents of what is in the Executive Function Assessment download:

Many individuals struggle with one or more components of executive function in their daily lives. Assessed are  each of the five components – flexibility, leveled emotionality, impulse control, planning/organizing, and problem solving. Based on the book  FLIPP the Switch: Strengthen Executive Function Skill  by Wilkins and Burmeister, this Executive Function Assessment is appropriate for use with (or on behalf of) intermediate, middle, high school and college career individuals. It has been found helpful in both school and clinical settings. The main part of this paper and pencil 20-page PDF download, the Executive Function Assessment Teacher Report, can be filled out by a teacher or a Mental Health clinician about the individual with whom they are working.

Next is a companion Executive Function Support and Intervention Plan that allows the user to document the specific goals, supports/interventions and data collection used by school staff or Mental Health clinicians to address specific executive function challenges based on the assessment. Also included is the Executive Function Student Interview for the teacher or Mental Health clinician to use. It is recommended to get the perspective of the student or client, involving them in the process and decision making on which areas to address to better their daily lives.

When an individual has strong executive function they are able to organize, plan, problem solve and pay attention to and remember details. Additionally, strong executive function helps a person remain calm under pressure and to be flexible when things do not work out right the first time (2015, Wilkins & Burmeister).

School staff report what they liked best about this assessment is it gave them specific and helpful ways to talk about their students during IEP meetings. Additionally, assessment items easily turned into  to IEP goals, on which students made progress.

A Mental Health clinician shares this: “In my therapy practice I only see autistic clients who have comorbid DSM diagnosis. The Executive Function Assessment has been helpful for clients (and parents) to understand just which things are difficult and what, if anything, to do about it.”

Table of Contents

What is Executive Function …………………………………………………….……………… 2

Executive Function Components ………………………………………………….………..… 2

Which Disorders Commonly Manifest Executive Function Challenges? ……..…….……… 3

Executive Function Teacher Report ………………………………………………….…….… 4

Executive Function Support and Intervention Plan ……………..………………………… 12

Executive Function Student Interview …………………..………..………………………… 13

Wilkins, S., & Burmeister, C. (2015). FLIPP the Switch: Strengthen Executive Function Skills. Shawnee Mission, KS: AAPC Publishing.

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 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.