Category Archives: Autistic Neurology

A Snapshot of Autistic Neurology ~ Part 3: Information Processing – The Gaps

This is the third 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)

The Gaps: Information Processing

When the gaps are what she’s getting
after searching through her stone islands of information
she experiences a huge frustration,

but tries hard not to let anyone know it
by trying to insure that her behaviors won’t show it
so nobody will know that she’s coming up empty,
not able to supply whatever it is they are after,
whatever it is they want her to know
(and she probably does, but can’t tell what it is just then).

Most of the time she wants to join in
to take her place (or any place!) in the world,
but she’s “drawing a blank,”
as that expression goes,
because the gaps are so empty.
She doesn’t want empty. She’d rather be friendly.
She tries to join in. She may laugh or smile,
but in a short while
all the world-people are mad again.

And that is how it is most of the time
when she tries to take part and act like they want her to act.
She can for awhile, but then “draws a blank”
when the gaps come up
where there should be bridges.

Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology, pg. 109.

The first photo is an afghan I crocheted to match an acrylic I painted some years earlier.

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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.

A Snapshot of Autistic Neurology ~ Part Two: Information Storage – Bridge Pieces

This is the second 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)

Bridge Pieces: Information Storage

The stone island stones
in that inside-my-mind space
have little bridge pieces jutting off them
in varying places
from their surface of stone.

Pieces of bridges, but never a whole bridge,
connecting any two surfaces of different islands

each one containing its very own specific information
set in stone
for one and only one
specific eventuality
learned from life previously
recorded historically
immovable, unchangeable
set as set can be
in stone island cemented reality
encapsulated, preserved for all time
forever, eternally
with no bridges connecting –
no way of sharing
one island’s info
with any other.

That’s why there are gaps
in that gray-matter space of her mind’s place

where she knows bridges should be
but are not there to connect
this info with that
and therefore no way
to extrapolate
info from one specific,
circumstantial island of stone
and apply it to something
a little bit slightly different
that might be occurring
just now in her life.

Sometimes she becomes quite frustrated
when she finds herself in a new situation

and isn’t able to gather together, sift and apply
bits of info from several stone islands
already in existence,
bobbing around, each one minding its own business –
never connecting
each their own info
one with another
because they can’t
having only bridge pieces – no whole bridges
anywhere to be found between islands
to span all the gaps.

If only world-people could see into that gray-matter space of her mind
a suspension of matter that matters

because it supports her many islands of stone
each one with their purpose of holding
pertinent, specific world-information

of what-to-do-when
and
how-to-act-if
and
when-to-say-what

solid information
cast in stone
solidified in place
in that gray-matter space
of her
mind.

Then world-people might see the little bridge pieces
stuck onto the sides of all these stone islands.

Bridge pieces just hanging there serving no purpose
(other than to underline the fact
that a bridge was meant to be there, but isn’t)
little bridge pieces going nowhere
with gray-matter gaps
where thee bridges
should be.

Perhaps then the world-people might come to understand
that even though she may know

all the info that’s needed to answer their question
or to produce a reciprocal response
to keep up with her part of their conversation,
sometimes it takes a lot of her time
to jump in a boat and float around
in that gray-matter space of her mind
floating in the gaps trying to find
all the right islands of stone
that might hold any relevant data
pertinent to the subject
at hand.
Sometimes it’s a cumbersome task
to access information in this manner
and other times
it is downright impossible.

It’s at these times when she knows that she knows all of the relevant data
and desperately tries to locate it and can’t

she knows that she knows it, but can’t tell you right now
at this very minute
exactly what it is
(and she may not even know it an hour from now)
because what she needs
can’t be fit together
to make any logical sense.
Please try to remember
she’s dealing with gaps
because there simply are
no bridges.

And at these particular times she tends to look very directly
at the person who is talking to her

(as if she might find what she’s looking for
by staring intensely right into that person’s eyes).
Sometimes she gets a goofy little half-grin
(or so she’s been told,
but as for herself never notices this).
During this time she’s marking time
waiting for the info she needs to come in
hoping to be able to fill in the gaps
with the info she knows that she knows,
but try as hard as she might,
she right now can’t find.

Invariably an exasperated, superior world-person will declare with finality,
“YOU KNOW EXACTLY WHAT YOU ARE DOING!”

and disgustedly walk away.
But if he doesn’t leave too fast he might hear her agree
because after all she already knows that she knows,
but just doesn’t know what it is
(or if she is told the info she is lacking
she can and may even repeat it back,
but to her, even the right info
supplied as it may be by frustrated world-people
has no present meaning to her
and therefore cannot be applied right now
to this particular situation in today’s reality).

She tries very hard to be acceptable.
She may even be able to say the right words,

repeating what someone
outside her supplied.
But her understanding
is blank just then.
She really can’t help it,
She has gaps, not bridges.

Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology, pgs. 105-108.

The first photo is an afghan I crocheted to match the acrylic painting shown in the second photo.

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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.

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.