Tag Archives: autism

Social Participation and the Autistic Sensory System

Autism, Autistic "Behavior", Communication, Sensory Solutions, Social Considerations, , ,

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

Autism, Communication, , , , , ,

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 book  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. 

Autistic Cognitive Processing Differences

autism, ,

Over the past 20 years we have begun to realize that people with diagnosed with ASD have a different cognitive processing style. Professionals have looked at autistic people and by observing their behaviors have come up with at least three theories that together impact reading comprehension in students with autism. Here are those theories along with aspects of their basic definitions:

Central Coherence:

  • the brain’s ability to process multiple chunks of information in a global way
  • and viewing them in context
  • in order to determine a higher level of meaning

Executive Function:

  • the set of skills or abilities involved in organizing cognitive processes

Theory of Mind

  • ·  the ability to recognize the thoughts, beliefs and intentions of others
  • ·  to understand these are different from our own
  • ·  and to use this understanding to predict behavior (Carnahan & Williamson, 2010)

We can now look at these three theories and know that it isn’t all together true that autistic people are lacking in these areas, but instead their brains function differently than the brains of neuromajority individuals. It has been more helpful to me in my practice to figure out how the neurology of the individual I am working with actually handles information and how his automatic style of autistic thinking works. It hasn’t ever turned out to be helpful when I have tried to get individuals with autism to think and handle information in a neuromajority manner.

For many years I have ascertained that it isn’t that I, as an autistic, do not have theory of mind, but that instead, I do not have YOUR neuromajority Theory of Mind. When I am with other autistics I discover we share our own Theory of Mind. Our brains work similarly to one another and differently from yours. Simply put – we have a different operating system. Just like you cannot adopt my Theory of Mind, I cannot adopt yours.

Additionally, when it comes to theory of mind aspects of interoception now inform us that individuals whose sensory system is not giving them typical and reliable feedback do not have the physiological basis – feeling and understanding their own bodily sensations that are connected with their emotions – that is the prerequisite to being able to understand how the thoughts, beliefs, intentions and feelings of others might be different from their own (Mahler, 2018, Personal Communication). Understanding this difference allows us to go on to predict behavior of the characters in a novel and of people in the world around us.

Neuromajority Theory of Mind is based on a shared experience of the functional interoception body mind connection. When experiencing a sensory system that is not integrated, autistics struggle to access participation in this shared experience. Today we can use The Interoception Curriculum: A Step by Step Framework for Developing Mindful Self-Regulation (Mahler, 2019) to support a more functional body mind connection.

Likewise, much of executive function happens differently for autistic people. Previously in this book you have read a few examples of the storage systems of autistic individuals. These storage systems are examples of the rudiments of executive function for that person. It is the way their brain is organizing the information. Left to itself, it is has been my experience that initial styles of organizations, being literal and concrete and starting at a young age, are often outgrown as youngsters age. They simply acquire too much information for their early years storage system to serve them well. When we understand their system we can impact the size, functioning, speed of retrieval, etc. to make it more efficient. In addition we can use the typical supports all human beings use to stay on top of the many things we need to keep organized both in our internal thoughts and in our external lives as we go about our days.

Central coherence allows us to figure out why it is that characters in a novel or people in real life are acting the way they are acting. It requires the ability to process many individual chunks of information in the story or in the context of life, hold all those individual things in place and then match them to the context or backdrop of what else is going on in the story (or life) – all of this to then surmise a higher meaning.

As for myself I have had lots of trouble doing this over my life, but have learned along the way just how my brain does it. Additionally, I have learned how to best support my autistic style of thinking and manner of handling information to be able to comprehend what I read and much of the social aspects that living entails.

Point to Ponder:

I simply think differently than neuromajority people think. It is not an inferior way of thinking. It is just different. Even so, because autistics are measured according our deviation from the typical standard of normal our different ways are often assumed to be inferior or less than.

This is another example of why it is not helpful to think of autistic people in terms of their diagnosis. Because a diagnosis is based on deviation from accepted normal, an autism diagnosis shows a picture of what autistics ARE NOT and highlights what we CANNOT DO as compared to the majority normal. A diagnosis says nothing at all about the human beings we ARE or what we CAN DO.Our abilities and skills often remain unnoticed and untapped.

The majority of the people in the world do not possess our autistic skills and abilities. Because of this they do not notice them and really do not have a good way to understand them. This makes it nearly impossible for neuromajority folks to support autistic skill development in us. For example, if my way of thinking in the movement and sound of color had been understood by those around me and then supported over my growing up years I likely would have been able to produce paintings well before my 50’s (Endow, 2013).

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.

Literal Style of Thinking

Autistic Neurology

Autistics are often quite literal and concrete when it comes to understanding words. One of my dear friends on the spectrum was going for a walk with her 9-year-old autistic granddaughter who kicked off her sneaker, carried it for a time and then put it back on. When she stuffed her foot back into her shoe she was left hobbling along and said her shoe hurt. As she was pulling on her shoe trying to adjust it her grandmother said, “Pull up the tongue.” The little girl stopped struggling with her shoe, stuck her tongue out of her mouth and pulled it upwards with her fingers while trying to ask, “Like this?” 

I once was called into a school where a mild-mannered little boy on the spectrum had all of a sudden started stealing things from the teacher’s desk. When they asked him why he was stealing he only said, “I don’t know.” This stealing tended to happen whenever the boy left the room. He had pullouts for Speech, OT, reading group and adaptive PE. In cartooning with this student to get the sequence of events in the right order it was discovered that his teacher often said, “Take care,” when he left the room. In all sincerity he confided, “I do try to take it, Miss Judy. Every time I do.”

Turns out his literal thinking caused him to take whichever object he thought might be “care” when his teacher said, “Take care.” The behavior was due to his neurology having a specific literal and concrete manner of processing words others say to him. So, all in one day he went from being thought of as a budding thief to becoming an endearing little boy trying to please his teacher and follow what he perceived to be her instruction (Endow, 2019)!

Take What?

“Take care,” my teacher

says to me

each time

I leave

her room.

I’d do

what she wants

if only I knew

WHICH

of all of

the things

on her desk

the name

of “Care”

goes to.

Each day I watch

her eyes to see

if I can tell

just where

they might come to look,

HOPING that

she’ll kook at “Care”

so I might

get a clue

of just

which item

she wants

me to take

every day

when

I leave

her room (Endow, 2006).

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

Autism, Autistic Neurology, Visual Supports, , , , ,

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.