Category Archives: Autism

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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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.

 

Non-Fluid Speech and Autism

I am a speaking autistic woman. Even so, I rarely have fluid access to my speech. Often times I have in mind something I would like to discuss with a friend so as to get their thoughts and ideas on the topic, but even though I know what I want to discuss the words are not available as speaking words. Oh, I know the words – they are in my head – I just cannot get them to come out of my mouth at will.

This often poses difficulties for me. One example is when I am with my friends who I consider to be brilliant in the field of autism. Most of the time I am with them for a purpose so we have an already planned agenda with little time for novel thoughts and musings sorts of discussions. We are all busy people in our professional and in our personal lives. Rarely is there time to get together for no reason at all – the times when I am most able to get the ideas in my head out through my mouth in speaking words.

Because I talk – and I can talk a lot – people who do not know me well are unaware of this difficulty.

People can easily see movement difficulties that are physical such as when a person has difficulty getting through a doorway or get stuck in a repetitive movement. However, nobody can see when the movement difficulty is internal such as words that cannot come out as speaking words at the time you wish to say them (Endow, 2013).

Over the years I have come up with several strategies to encourage the speaking words out of my head. The reason I need several strategies to try is that I never know which one might work when and sometimes, even though I try all the strategies, I still have no success. Here are the three main strategies that sometimes work for me to get the ideas in my head to come out as speaking words:

  • Begin speaking any words. Sometimes this allows the words I really want to speak to hook onto the random words and thus be carried out of my head through my mouth as spoken words. When the strategy doesn’t work at least I get credit for “being social” – an area I can easily get “down graded” in if not putting forth effort.
  • Use a research article that has some aspect I can use as a launching pad. Some- times if I can start speaking about a research article related to my thoughts, the ideas in my head can hook onto this with corresponding words coming out of my mouth. When the strategy doesn’t work at least the conversation was about some new and interesting research.
  • Use written words. Sometimes if I write down the words I wish to speak, then, when I am with the person I want to have the conversation with, I can pop up the picture of the piece of paper I wrote the words on and by seeing this in my head I am able to “read” the words as a launching into the conversation I wish to initiate. When the strategy doesn’t work nobody can tell because they cannot see the picture in my head so I do not get “faulted” socially.

I wrote about this last strategy more than twenty years ago. It was first published as a poem in my first book Making Lemonade: Hints for Autism’s Helpers (Endow, 2006). A few years later this one written poem became the catalyst that allowed the words of an entire new book called Paper Words: Discovering and Living With My Autism (Endow, 2009b) to be written. Here is that poem. Notice the unusual spacing. The empty spaces represent the pause in time it takes, even when writing, for the next word to come in so I might write it down. As you read please contemplate how internal movement differences might impact autistic individuals you know.

Paper Words

Paper words
                can be heard
                              so speak up ink
                                             and say them!

Speaking words
                are burdensome;
                              they get her
                                             lost      and tangled.

When speaking        words
                 two people should
                              take their turns
                                             to say them.

Start words                now 
                 then stop                   and wait
                              and listen                   some
                                             adds up to conversation.

But,     starting words
                 and     stopping them;
                               and                 seeing faces

                 is much          too much
                              to keep track             of
                                              when having                conversation.

So,                  paper words
                 are much preferred.
                                Speak up ink;
                                               now say them!

Listen people
                 to the ink;
                                you won’t get
                                               lost or             tangled!

NOTE: This selection comes from the bookAutistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology.

BOOKS   BY JUDY ENDOW 

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

The Autistic Experience of Wanting a Friend

In my experience of working with countless autistics over time I know that most of them express the longing for having a friend. They simply don’t know how to make that work. More specifically, they don’t know how to make conversation work for them to be able to participate in the social fabric of life.

Our society uses the medium of conversation for social participation. Through social participation most individuals discover an array of people, some of whom they wish to have as friends. For autistic individuals this often does not happen without lots of support.

Over time many social skills have been directly taught to individuals with autism. We then moved to teaching social understanding rather than individual social skills. We have developed lots of strategies such as cartooning, teaching hidden curriculum, social mapping and social narratives. While these strategies are helpful ways to deliver social information that autistics don’t automatically pick up, still autistics most often go away not having the skills and abilities to use conversation to make friends.

Assigned Friends Outcome

I was taught to say, “Thank you for being my friend.”
So I say it.
I was told to smile like I mean it.

So I smile.

I know I am supposed to feel grateful
That you are my friend
That you took the class
On how to be a peer mentor to me –

The good friends way –
A pal for six weeks
You have been defined

You are a good person
For giving up your spot
At the popular kids’ lunch table

To earn the community service hours
You need for graduation
By eating lunch with me,
By being my assigned friend.

I ask, “Do you know Jerry Lewis?”
Because I think you would like him

I think you are a modern day Jerry Lewis –
A Good Samaritan who calls himself friend.

You don’t have a telethon on TV,
But you have the Jerry Lewis Telethon
In you heart
Imparted by Mrs. Jones in her Good Friends Program.

You are a good person.
You are a trained Good Samaritan now called “friend.”

Definition of Good Samaritan
“A person who gratuitously gives help or sympathy to those in distress.”
Says dictionary.com

Next month you will get your community service credit.
Your lifelong attitude about people like me
Will have been shaped

Because the peer mentoring training
Has passed on to you
Society’s adoption of Jerry Lewis’ ideas about me –
A person in need of sympathy
And a person in distress
Only because I am me – an autistic

We have become fake friends
For six weeks –
A Mrs.-Jones-Good-Friends-Program-success!

Your benevolence
 My neediness
Having been defined

With a line drawn between us
Our two groups separated
Defined, distinct, different from each other –
Society’s wisdom at categorization…

When it is over
We say our goodbyes

And like I was taught I say, “Thank you for being my friend.”

And I remember I am meant
To smile like I mean it.
So I smile.

Goodbye peer mentor –
My assigned pal
From Mrs. Jones Good Friends Program.

You go on to your next project
I wait for my next assigned friend to eat lunch with
Both of us having been marked by the experience

Unbeknownst to Mrs. Jones and to us –
The indelible ink of societal attitudes
Wrote messages on both our hearts
Confirming my place in your world…

That it is indeed YOUR world
And thus, your right
To continually put me in my place

For which I am meant to say,
“Thank you for being my friend.”
And to smile like I mean it.

And this status quo could march on and on EXCEPT

Yesterday I stopped smiling
And for all the rest of my todays

I will no longer say
“Thank you for being my friend.”
Even though I know I am meant to.

Today autistics and those who work with them have an opportunity to use the strategies out- lined in Talk with Me: A Step-by-Step Framework for Teaching Conversational Balance and Fluency (Mataya, Aspy, & Schaffer, 2017). Implementation of this program goes way beyond teaching and practicing elements of conversation. Autistics have been able to develop critical mass (Myles, Aspy, Mataya, & Schaffer, 2018) in conversational fluency. Several individuals I know have gone on to be able to use the medium of conversation to allow them to develop friendships based on shared interests……(to continue reading please see  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. )

Photo shows two large white eggs on the ground in a wooded area.

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 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.

 

Concrete Style of Thinking

When it comes to autistic individuals, those whose brain gloms onto concrete thinking are often our rule followers. They know exactly how things are meant to go and they follow their perceived routine, doing things exactly in the same way every time.

One time I was called in to a high school because a student on the spectrum had picked up a tabletop copy machine and threw it on the floor, causing considerable damage. This situation was cartooned and the problem discovered before we even got to the event of throwing the copy machine to the floor.

This student was able to draw cartoon stick figures and then told me what to write in the word bubbles and thought bubbles as we went. First, he was sitting at his desk doing a math worksheet. Next, he was sitting at his desk reading his paperback chapter book. Then the bell rang signaling the class was over. He then threw his book on the floor.

This student asked if I could write swear words in the word bubble because he actually had said a swear word, but the rule was no swearing in school. I knew he would get stuck on this if I didn’t find a way through for him because his cartooning needed to be accurate and he also needed to follow the rules. Therefore, I showed him how to write a swear word using asterisks in place of some of the letters.

When he got done with that frame I commented he must have been really ticked off about something to use a swear word, especially since he was such a great rule follower and the school had a no swearing rule. He told me, “Not mad, not sad.”

I accepted that and then added to the frame showing the bell had rung. (An empty frame that had the letters bzzz to indicate the bell sound.) I added a stick figure and a thought bubble and prompted, “Tell me the words to write in your thought bubble.” Using this visually concrete way to elicit the timeline of events along with his thoughts worked well.

The words in the thought bubble turned out to be the internalized rules he had made for himself on how to read a book. The steps were actually numbered! He had made this list when he was a very young boy and his parents read him storybooks. The rule list went through such things as turn open the cover and the front page one, turn each page and read each word until there are no more words or pictures, turn any remaining pages, turn the inside back cover to close the book.

I could see the problem! He was using a preschool set of rules for reading a picture book and now he was in high school reading chapter books. The rules no longer worked! Generally, a chapter book is not read in one sitting. How frustrating to take out his book for pleasure reading each time his seat work was finished and to start reading on the same page one over and over! He said, “I follow the rules as I know I should. Over and over, again and again, but never do I get to the end of my book. It must be because I’m stupid” (Endow, 2006).

We needed a solution that would work for his neurology. When I suggested that since his old rules were meant for childhood picture books maybe he could update the rules to cover chapter books he disagreed. He wasn’t changing the rules. They were the rules!

The next time I saw him I brought several bookmarks with stickers of his then favorite Toy Story movie. He was invited to make a set of rules for how bookmarks worked that could fit into his rules for reading a book. It worked!

Once again, understanding his neurological style of thinking dictated by the way autism played out in his brain allowed for a resolution to the behavior of throwing his book each day at the end of math class which culminated in a frustration big enough that on his way out the door one day he picked up and threw a copy machine.

Even though throwing things was the behavior problem I was called in to solve, it wasn’t the real problem. Finding the glitch – that place where his autistic style of thinking did not interface well with the world around him – is what was needed. Then, once the real problem is discovered we needed to come up with a real solution – one that worked for him – i.e., bookmarks!

Simply giving him a rule such as no throwing things may have served to cut down on the throwing, but the frustration would have grown and he would have engaged in an alternative-to-throwing behavior. We often give our students rules about what they can and cannot do around their behaviors. It seems to make sense, especially when they are rule followers, but it rarely pans out as a viable long-term solution.

Additionally, we have the science that allows us to extinguish a behavior. In the long run it usually doesn’t serve anyone well to simply extinguish a behavior because that behavior is a solution for something – in this case to release the pressure that came from feeling compelled to follow a set of rules that no longer served him well. When one behavior is extinguished it is soon replaced by a new behavior that is always a more intense behavior. It doesn’t work to just say no to behaviors. We need to find the glitch – that place where autistic neurology doesn’t interface smoothly with the context of life – and outsmart that place based on that particular individual’s neurology.

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

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.