Tag Archives: #actuallyautistic

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.

 

Reading Comprehension, Perspective Taking, and an Autistic Solution

Is perspective taking important to reading comprehension? Of course it is! Understanding why characters are behaving in certain ways is crucial to comprehension. We also need to be able to understand that different characters have different perspectives and to be able to shift back and forth between characters and their particular perspectives. Because of this, in reading and in life in general, autistics are often admonished to “put yourself in someone else’s shoes.”

To say something like, “put yourself in someone else’s shoes” assumes a shared experience in the way we think and handle information. That is likely not the case when it comes to autistics, meaning that because their brains likely do not handle information in a neuromajority manner they do not share your experience. That is why understanding HOW autistics think is crucial to understanding how they can come to comprehend what they read or find their place in a multifaceted, fast paced world.

I am intimately acquainted with this admonition – “put yourself in someone else’s shoes” – because I have heard it all my life! In fact, growing up and during my adult years I have been scolded with this saying because I have not been able to put myself in someone else’s shoes. These scoldings never helped me gain this skill.

Coming to understand how my own brain handles information is what made the difference. Here is how I see it:

Why it doesn’t work for me to take your perspective:

As an autistic, it doesn’t work well for me to try to follow the admonition “put yourself in someone else’s shoes,” suggesting that if I do that I will somehow magically wind up understanding exactly how this other person thinks and feels. It seems to me this involves a multistep process.

Step One: To “put myself in someone else’s shoes” means I am supposed to think about how I would feel if I were in the same circumstance.

Step Two: It is assumed that once I think this through, I will have a similar feeling to the neuromajority person.

Step Three: It is thought that I will be able to act, based on my now similar feeling, in a way that will be much appreciated by the neuromajority person experiencing a given circumstance or difficulty.

Looking at these three steps, I am very able to accomplish Step One. I can think about how I would feel if I were in the same circumstance.

Step Two is where the problem comes in, because very often if I were in the same circumstance, because of my autistic thinking style, I would NOT wind up feeling the same way a neuromajority person feels.

Then, when looking at Step Three, yes, I am able to act on MY feelings, but it won’t work out well socially for me because MY feelings likely will NOT match the feelings of the neuromajority. So that is why it doesn’t work out for ME to TAKE your perspective.

Personal Example: Take for example the time I left the home of a friend without say- ing good-bye. We were done visiting, so I left.

Later, I found out my friend’s feelings were hurt because I hadn’t said good-bye; she wondered what she had said or done to deserve what she considered rude treatment. She guessed that she had somehow offended me.

None of this was true for me. I had simply left when the visit was over! No matter how much I think on this, I will never arrive at the same feelings as my friend. So, it will be of no benefit for me to try to put myself in her shoes.

However, I can come to understand how my friend thinks and feels about me leav- ing without saying goodbye and then respond based on her take of the situation, which I have learned to do. I always say goodbye when I leave now – not only with this friend, but with everybody (Endow, 2012)!

For most of my life, people have assumed that I am lacking because I have been unable to take their perspective. The truth is I can come to understand others’ perspective and act on this understanding even though I do not naturally take their perspective. In fact, as an autistic it is not necessary for me to actually TAKE the perspective of others! I only need to understand their perspective to enable me to act in a way that will be socially desirable.

This isn’t rocket science! The ways of the majority is assumed to be “right” and becomes a societal standard. Anyone who doesn’t measure up to the standard is assumed to be deviant or “wrong.” I don’t believe most people even think about this. They are not trying to be mean or in any way think or behave badly to autistics. Instead, it is merely an assumption most peo- ple act on without giving it any, or very little, thought (Endow, 2013).

Solution for Perspective Taking Based on Autistic Thinking Style:

As an autistic, I have learned that when I understand the “majority-is-right” assumption, I can make the necessary accommodations to fit more comfortably into the neuromajority world around me.

Rather than trying so hard to take someone else’s perspective – when that perspective is very foreign to me – what has worked very well for me is instead to try to understand the thinking style of a neuromajority person.

Also, I try to understand the way the feelings of neuromajorites are attached to their thinking because it is often different from mine and has to be accommodated for in order for me to fit more comfortably into the world around me.

To do this, I think of the neuromajority person and myself as characters in a play. This enables me to understand how to act in a compassionate manner based on someone else’s perspective without having to figure out how to take that perspective as my own – something I am not able to do simply because my brain does not seem to work in the same way as the brains of neuromajority people’s brains work.

I understand that thinking elicits feelings and that most neuromajority individuals think in similar ways and that this, in turn, leads to shared feelings. However, because I don’t always share this experience, I have had to figure it out another way.

I can NOT understand by simply putting myself in others’ shoes because even though I could and did put myself in their shoes, my neurology would not allow me to arrive at the same conclusion of a shared feeling.

Instead, I have learned to fast-forward the (current life situation) AS IF it is a play. That way I can see in my head the various ways people might come to look as the scene plays out. I can work out the effects of various words and actions on the characters in the play I have running in my head. Fast-forwarding allows me to act in a way considered “appropriate” without having to understand what the characters are feeling and why.

The amazing thing is that the more I act in a way that makes scenes come out favorably, the easier it is to pull it up again at a future time. In addition, after I acted “right” several times, I could anticipate the responses of others, and it was this anticipation that allowed me a soft feeling of my own – of wanting to relate to and be a part of making the scene come out nicely for all!

It is important for autistics to learn how to take a perspective other than their own according to how it works for their autistic neurology. This, in turn, will lead to increased ability to comprehend written materials where different perspectives are discussed.

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

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 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.