Category Archives: Sensory Solutions

Autism and the Importance of Stabilization

Autistic "Behavior", Sensory Solutions, Visual Supports

As an autism consultant I am often asked how I sort out what to do when I see an autistic client who is struggling in school or in life. As an autistic person I know first hand if stabilization needs are not met, regardless of the supports in place an autistic person will struggle. Stabilization consists of three areas that interplay – internal and external regulation in the context of a positive relationship.

Internal Regulation ~ Sensory Diet
Internal regulation has many components, but for stabilization I look at the sensory system. When a person has an autism neurology we can know that the sensory system very likely does not automatically regulate as it tends to do in a person without autism. Instead we must bring intentionality to sensory system regulation. So, the first order of business is to ensure sensory regulation. This can be accomplished through use of a sensory diet as prescribed by an Occupational Therapist well versed in sensory regulation and autism.

External Regulation ~ Visual Schedule
Most autistic people are quite visual. For many of us our native language is visual. It is how we make sense of the world around us. Words become understandable only when they are represented by something we can see either in our head or in the world outside our skin. Before anyone can learn in school or participate in life, besides being internally regulated, he needs to know that a structure exists. An autistic neurology doesn’t often automatically pick out and use salient information from day to day so as to be able to predict what will happen when from day to day. Therefore, use of an interactive visual schedule is quite powerful in establishing external regulation.

Positive Relationship ~ Person-First Attitude
Use of a sensory diet and a visual schedule are necessary for basic regulation. However, for individuals to truly reach their potential the daily working out of sensory supports and use of a visual schedule must happen within the context of a positive relationship.

People matter. People matter to autistics. Because of our differences in not automatically regulating, our style of thinking and cognitive processing differences we often appear to not be attending to others around us. Over the years, those looking at us have erroneously decided that because we do not interact the same way with people as others interact that we do not want or need other people in our lives.

As a result autistics are often not even thought of as fully human. Many times people talk about us in front of us as if we cannot hear or understand what they are saying. Did you ever wonder about that predominant theme among autistics of feeling as if one were an alien? I believe much of that comes from the interplay of not being regulated, not knowing what will happen next and, most importantly, not being regarded as a fully human person by others around us.

Conclusion
If you want the scoop on internal and external regulation and all the practical ways to put that in place the information is laid out in the book Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. When the context of service delivery, so to speak, becomes a positive relationship with person-first attitude the stage is set for an individual to reach his potential. Here is a section from the Foreword by Brenda Smith Myles to illustrate this concept:

“This book is replete with information that will help individuals meet their potential. One of the underlying constructs here and, indeed, in everything Judy does is “person-first attitude” (Endow, personal communication, June 27, 2010). We are all familiar with the concept of “person-first language” – talking about the person before referencing her exceptionality (i.e., a “child with autism” instead of the “autistic child”). “Person-first attitude,” according to Judy, is what some of us get after using “person-first language.” Unlike “person-first language,” it cannot be mandated. “Person-first attitude” is not about how we use the power of our words to benefit people with disabilities. Instead, “person-first attitude” is a reflection of what we become while in relationship with each other. It is the elusive substance of how our hearts respond to our common humanity rather than the correctness of our language in response to their disability.” (Endow, 2011, pg.1)

IMG_3250

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.

Originally written for and published by Ollibean on December 21, 2015

Autism and Sorting Out Sensory Snags

Sensory Solutions

All my life I have been easily overwhelmed by sound and motion. I can hear things nobody else even notices such as the hum of electric devices that are plugged in even when the appliance or device is not in use such as the coffee maker on my kitchen counter. I can hear fluorescent lights hum, the steady grind of ventilation systems in buildings and the crackling from inside my television when it is muted.

When I am in the midst of much movement I tend to get dizzy. This is really distracting because I am in busy places when I present at conferences and when I work in school districts. I have to constantly monitor and be aware of the dizzy feelings in my body so as to stay on top of it and not become too far gone so as to appear like a staggering drunk when walking down a hallway.

I used to get surprised by my unreliable sensory system quite a lot as I went about daily life. These days I get less surprised because I have learned to do a sensory scan of new environments to identify up front what sorts of things will likely negatively impact me. It takes but a few moments when walking into a new classroom, a store, a friends home, etc. to look around and identify the “too much” for me sensory wise. I can then quickly figure out how to minimize the impact these sensory assaults will have on my system.

For example, when I go into a restaurant I quickly scan the seating arrangement. If I see the place has high backed booths I ask for a booth as it cuts down on incoming sensory information both in terms of sound and vision. If booths aren’t available I ask for a table on the perimeter. When I sit with my back to a wall I effectively decrease the sensory input I might otherwise receive if I sat in the middle of the dining room surrounded by sound and movement while dining.

Even so, sometimes no matter how hard I work at this my fragile sensory system will fall apart before I am done working for the day or finished with an outing. I have some backup plans waiting in the wings for such occasions. My arsenal includes three different styles of ear plugs purchased from the rent-a-tool place at a home improvement store, a retractable clip on string, a therapy ball that I use for deep pressure, swimming, sleeping with a weighted blanket, sitting in chairs with arms, massages and not standing still for more than a few minutes. These are some of the things that both keep my sensory system in a more stable state proactively and can be used reactively to calm my sensory system once it has become overwhelmed.

The amazing thing to me is that even though I have been teaching sensory regulation strategies to others I work with I had not identified myself as having sensory needs. Once it was pointed out to me I was able to apply things I already knew to myself.

Today I am able to travel, stay in motels and negotiate all the sensory surprises my life brings to me as I crisscross the skies and drive around my state to accomplish my everyday work. It is never too late to identify your own needs, construct a self-advocacy plan and implement it. I do so every day in all sorts of situations. I am much more comfortable in my own skin and in the world around me now that I no longer fear unknown or novel situations.

UntitledPainting is Lower Left Planetary Sky
Available in sets of 5 greeting cards
and acrylic prints in 3 sizes
in the Art Store at www.judyendow.com

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.

Originally written for an published by Ollibean on November 16, 2014

Sun Waves: A Sensory Aspect of My Autism

Autistic "Behavior", Growing Up Autistic, Sensory Solutions

“As a child I eventually came to love being outdoors, but I didn’t always love it. In fact, I can recall the bright boldness of the sun being painful and of trying to duck away from it. By the time I was walking I knew this brightness was called the sun. Mostly I liked the sun sparkles, but some days I protested because the sun was so bright as to turn its sparkles into painful burning to my eyes. I became quite aware of which direction the pain from the bright sun came from at various times during the day (Right Sun and Left Sun). As a toddler I was tracking the sun and its amount of brightness so as to avoid the sensory impact of being hurt by this fireball as much as possible.

I noticed the sun made the air wavy (Sun Waves) right before it became too bright to tolerate. Because the wavy air was attractive to me I did not immediately put it together that this was a warning of the too bright, eye-hurting sun that would quickly follow. Thus one minute, I would be happily content sitting in the sandbox enjoying the sun waves I could see all around me while the next minute protesting and hiding in the shadows of the garage to avoid the sun. I did not have language to use to explain this.

Considerations When Working With Others

  • Sometimes children seem content one minute and then scream and tantrum the next minute. Often people are perplexed because it seems like nothing at all happened to cause the abrupt change in behavior. Even though that is your experience as a person looking on, remember your experience is rarely the experience of the autistic!
    `
    Atmospheric or environmental changes that seem so subtle as to not even be noticed by a neurortypical person (NT), are often experienced as a huge problem by an autistic person. Sometimes the magnitude of this difference is the difference between experiencing comfort and experiencing pain.

✔ Does your child go from appearing content to having a tantrum in no time at all?

✔ If yes, might there be a sensory component?

  • It is more helpful to acknowledge that something is wrong when a child is in distress than to say nothing is the matter only because that is your perception or experience of the situation. To tell someone who is experiencing pain or discomfort that nothing is wrong undermines the development of a trusting relationship. When I find myself in these sorts of circumstances with students I simply say, “We will figure it out.” This serves to align me with the student as a problem solver even when I do not yet understand the problem.

✔ What phrase might you use to align yourself with your child even when you do not understand the difficulty your child is experiencing?”

Note: This blog and painting are an excerpt from Painted Words: Aspects of Autism Translated (Endow, 2013, pp. 24-25).

original

Sun sparkles from the sky to me
A present to my soul
Brightness, lightness now reigned in
The girl her mastery shows! 

As a child I often tried to catch the sparkles from the sun.
I later learned as an adult that most people do not even
see these ever-present-to-me sun sparkles! Each day my
autism neurology presents me with a unique mixed bag
of blessings and challenges.

(Note: Poem and words appear on back of Sun Waves

Left Sun is the tittle of the acrylic painting by Judy Endow. To purchase greeting cards, prints or originals see art at www.judyendow.com

Right Sun is the tittle of the acrylic painting by Judy Endow. To purchase greeting cards, prints or originals see art at www.judyendow.com

Sun Waves is the acrylic painting by Judy Endow shown in this blog. To purchase greeting cards, prints or originals see art at www.judyendow.com

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 Eye Contact

Communication, Sensory Solutions, Social Considerations

A challenge I am continually faced with as an autistic adult is the misinformed presumption and resulting behavior of neurotypical people when I do not look at them the in way they expect, want or demand of me. It is challenging because society has put the onus on me to change. Often it does not matter to others why I am different. They just want me to stop being different. Recently I was told directly, “If you want to be treated like a real person then act like one!”

Eye contact can be hard for autistics for a variety of reasons. When I was a youngster I received too much bright, bold, painful sensory information from making eye contact. To guard against the intense physical pain I did not engage in eye contact. If my teacher demanded eye contact I obediently did so, but at a price. I would float out of my body, hover up near the ceiling and look down, watching the little girl of me (Endow, 2013).

Donna Williams says, “Dissociation is the ability to cut off from what is happening around you or to you. In its simplest form it is daydreaming. It is a skill all children have and which children with autism tend to overdevelop in managing a world they find overwhelming for a whole range of reasons” (Williams, 2014).

Today, 50+ years later, I am able to use eye contact in a manner that can appear typical most of the time. My sensory system has changed over time and eye contact does not produce as much pain as it once did. When I am well regulated I can manage the moderate pain I do experience from eye contact in my day-to-day life. However, avoiding eye contact is something I automatically do to minimize the amount of incoming sensory information and thus cut down on pain. I have to remain on high alert so as to catch when I am automatically moving into this eye contact shut down mode or I will not even know when it is happening.

I think it is unfair in our society that even though something like eye contact can be physically painful for autistics and that even when we endure the pain we are not able to pick up social information from eye contact. We do not choose this, but it is one of the ways our autistic neurology can operate. Yet, even when people know eye contact can be painful and that we will not pick up much social information, we are STILL expected to perform the feat for the social comfort of others. Each time we don’t perform the socially expected eye contact people assign negative character attributes to us such as shifty, sneaky, untruthful, disinterested and hiding something.

Because of the inflexibility of society I find, as an autistic, I need to make accommodations for the neuromajority who get stuck in these erroneous assumptions. If I fail to accommodate them I wind up not only being thought of poorly, but I am given less opportunities, less job promotions, and less social and business invitations to events. In turn, this affects not only my quality of daily life, but also my ability to support myself with sufficient income.

I think it is wrong of society to negatively judge me by my lack of eye contact, but because they do and because I want access the onus has been on me to accommodate them. If you are autistic and need to outsmart the incorrect assumptions people make about you around your ability to employ conventional eye contact here are some things I have found helpful:

Fake Them Out
In this strategy I look at some place on another person’s face that is close to the eyes, but not directly into the eyes. This can be a person’s eyebrows or hairline. Practice with a friend by having your friend tell you when you are looking at him and when you are not as you employ looking at different spots on his face rather than his eyes.

Secretly Spy on Them
In this strategy I watch TV programs or video clips of scenes from TV shows where people are making eye contact so I can see what it is that people expect. With video you can stop, pause and replay as much as you like. This is much more helpful than to try to learn from the fleeting glances of eye contact that take place in real time which are often gone before my autistic brain can even start to process them. It is a good idea to have someone you trust help you find video clips that are considered typical eye contact because this strategy can backfire if you learn some eye contact that would be inappropriate for general everyday use.

Give Them an Experience
This strategy provides a simulated experience that allows other people to understand how they might feel if they needed to abide by a social rule that did not come naturally to them. You can simply tell this story and invite people to imagine it or you might invite them to actually try it for a few minutes. Here is the script:

New Rule: No Looking at People

Imagine how you might feel if you were asked to stop looking at people – to cease all eye contact. Now imagine how much more difficult that would be if each time you did manage not to engage in eye contact you felt physical pain and the only way to relieve that pain was to look at the person even though you knew it would make others unhappy. This is often what we put autistics through when we insist they go against the way their brain does business by forcing them to use typical eye contact” (Endow, 2013).

Self-Advocacy Script
If eye contact is at times so physically painful as to be impossible it can be helpful to explain why you are avoiding eye contact quickly and effectively to people so they will not assume negative character traits and consequently afford you less opportunities in life.

In conclusion, I think it totally unfair that the burden of accommodation falls on the autistic when it comes to eye contact. In my estimation it would be better if society could come to embrace neurodiversity, but because I cannot control society’s acceptance of my neurology I have figured out some ways to get where I want to go in this world, outsmarting John Q. Public’s limited and narrow beliefs, lack of Theory of (autistic) Mind and faulty attribution towards this autistic!

originalSizzle Pop is the tittle of the acrylic painting by Judy Endow. See art at www.judyendow.com

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.

ADDITIONAL RESOURCE

Williams, D. quotation viewed 2014 on web site page www.donnawilliams.net

Originally written for and published by Ollibean on October 28, 2014

Fractured Vision: One Autistic Phenomenon

Autism and Aging, Growing Up Autistic, Sensory Solutions

I started painting with acrylics in 2012. I wanted to use that medium to illustrate aspects of my autism. To date I have written several articles and books along with speaking in three countries about aspects of autism. Painting is one more way to explain some of the nuances of autism to those who might be interested.

Painting allows me to show perceptions of the world that I see with my eyes as delivered through the neurology of my autism. I match up what I see with the colors and movements of paint on canvas paper. I have not taken classes about painting, other than a one-hour lesson where someone allowed me to watch him paint and ask questions about painting supplies and techniques. I determined after that hour that I could learn to paint.

So, now I paint. I just do it and really do not know if I am doing it correctly or not. What is important to me is the finished product – a painting allowing others to be able to see what I see.

It took me most of my life to realize that what I see isn’t what most other people see. I want people to understand some of the aspects of my autism that I cannot expediently explain with words, but can readily show by painting.

One of those aspects of my autism is something I call fractured vision. It typically occurs when I am in sensory overload. What I am looking at divides up. Imagine a picture that is suddenly cut up into several pieces. One day when this fractured vision phenomena was occurring, I wondered if I might be able to illustrate it through painting.

To illustrate this concept, I copied what was happening by cutting a painting into the pieces my visual perception was delivering to me at that moment. Over the course of a few weeks I took each opportunity of real-time fractured vision as I experienced it and showed what happened by painting and then cutting the painting into the fractured pieces my eyes were delivering to me.

Please know that not all autistics experience the world in the same way I do. The more salient take away point here is that more than 90% of autistics have sensory system differences from the neuro majority population (Baker, 2008 and Baranek, 2006). Those differences impact all of who we are and how we navigate in this world. Because most people don’t experience what we experience there typically are not words adequate to describe it.

When I was growing up, and as a young adult, whenever I would try to describe my experience either it was discounted as not possible, I was said to have a big imagination or it was thought that I was hallucinating. If you want to read more about my story you can do so in the book called Paper Words: Discovering and Living With My Autism (Endow, 2009). From my early 20’s until my late 50’s I refrained from talking about my experiences. It kept me out of psychiatric institutions and that was a good thing.

Today I am braver and I am now in charge of my own life so am able to talk about aspects of my autism without needing to worry what will happen if others do not believe me. At this point in my life others do not have the power to decide my experiences mean I am in need of a psych hospital – at least they no longer tell me this AND even if people would think it, there is no longer anyone who has the power to make it happen. This helps me to be brave and speak out and show my experience through painting.

Here is a picture of one of my paintings I use to illustrate the aspect of my autism I refer to as fractured vision. To see more paintings illustrating fractured vision look in the 2013 Gallery of the Art Store at my website. If you would like to see a larger collection of my paintings along with words explaining the aspects of autism they illustrate please see the book called Painted Words: Aspects of Autism Translated (Endow, 2013).

originalBlue Mountain Panorama by Judy Endow

Note: Greeting cards along with prints in three sizes
 available for purchase
at the
 Art Store on www.judyendow.com

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.

Originally written for and published by Ollibean on August 5, 2014